Pat’s Pain Blog
This blog describes, in my words, my wife’s most recent treatments for her horrendous pain condition. In addition to her current blog, you can read about her two 5-day ketamine coma experiences (July-August, 2008 and June 2009). The first, unfortunately, was not the hoped-for treatment to end all treatments—though it may well have saved her life. We are hoping and praying that this second coma, which follows several surgeries to ameliorate pain triggers, will be the final answer for pain relief. You can also read about her electroconvulsive therapy experiences. Entries are in chronological order, with the most recent ones at the top of the page. I don’t know where this unfolding story will take us, but I am hopeful that my wife’s pain will become reduced to the point where we can resume our normal lives.
My student and good friend, Aaron Corbit, very generously created this website and maintains it. As such, there are no automated functions like accepting and displaying comments. However, he has agreed to post comments from readers, so if you wish, please email them to me at whayes *AT* llu.edu with the subject heading COMMENT FOR PAT. I'm sure that Pat would love to hear from you!
- Current Blog
- TMS Oct '09
- ECT Jul '09
- Coma Jun '09
- ECT Dec '08
- ECT Sep '08
- Coma Jul '08
- Comments
Pat's Current Blog
September 29 to October 31, 2009 (transcranial magnetic stimulation) - Please click on the TMS Oct '09 tab.
September 27, 2009 (trouble, injections, and a new option) - Pat has experienced the best 3 months out of the past 2.5 years. The mega-doses of ketamine followed by ECT during May-July definitely worked. In the past three weeks, however, Pat has suffered from a sinus infection that cleared up with antibiotics but appears to have returned; neck spasms, possibly from the ton of reading she has finally had a clear enough head to focus on; and a sharp increase in pain in one of her teeth, probably associated with the sinus problem. As has happened in the past, these combined sources of stress and pain are causing an alarming increase in her tailbone-area/pudendal/sciatic pain.
Trying to be proactive, we got a quick appointment to see her neurologist/pain specialist, Dr. Jordan, last week Thursday in Santa Monica. He gave her botox/steroid/anesthetic injections to help calm down the muscle spasm that is irritating her entrapped sciatic and pudendal nerves. He also described how they have implemented new changes to their Transcranial Magnetic Stimulation (TMS) treatments of pain. Working with UCLA, they now have incorporated PET scans combined with TENS stimulation to identify the pain processing areas in the brain and precisely direct the external magnetic stimulation to within 1 mm of these regions. This is the only group in the world using this combination of technology and the results so far have been fantastic for treating both depression and pain, with 50 of 52 patients thus far being successful (roughly one-half were pain patients, and one failure was a patient who quit after 3 treatments). At this point, their conclusions are based strictly on observation; eventually, they will implement a study with proper controls.
After TMS was approved by the FDA and Loma Linda received its machine, Pat underwent TMS treatments earlier this year in March. Having realized no benefit whatsoever after 11 treatments, we decided to give it up. However, we were targeting the left prefrontal cortex of the brain, the major area for depression, and this new approach is much more specific. Dr. Jordan is finding that the secondary somatosensory cortex is an important target for pain, but he generally targets 2-3 different areas during the four-week course of 20 treatments. The difference between TMS with and without guidance could be likened to using tweezers with one's eyes opened to remove a fly from a bowl of soup compared to using a spoon with one's eyes closed. ECT would be like throwing the contents into the air and hoping to catch the insect out of the air before the soup falls back into the bowl (but hey, it can be done!). ECT requires an i.v. stick for each treatment and has memory loss as a daunting side effect, whereas TMS involves neither.
Pat has elected to undergo this new treatment, which will begin Tuesday and continue at least 4 weeks. We're going to give it our very best. We'll be spending a lot of time in Los Angeles, so I will have to do some commuting back and forth to meet my work obligations. We're addressing Pat's condition as aggressively as we can, hoping to avoid further increases in pain sensitization and improve upon where things were at for much of the summer. We can use your prayers!
September 6, 2009 (a set-back) – Many of you inquire often about Pat and are quick to offer your love and prayers. I don't know how to thank you. Of course, it's very difficult to watch someone you live with and love experience suffering. Writing about it is anything but fun, and I still wonder often why I continue this. And then, when I take a breather and give it a rest, many of you remind me why I really should carry on. Thank you for caring!
In my last update, I mentioned the persistent flu-like systems that seemed to be improving. I wrote too soon. Just a few days later, we went to Loma Linda's Urgent Care for extreme sinus, neck, and stomach discomfort–all of which seemed to exacerbate the ever-present tailbone-area pain. The doctor ordered a blood test (no results available yet), put her on antibiotics and a nasal (sniffable) corticosteroid for her grossly swollen sinuses, recommended heat and massage of the neck (from you can guess who), and prescribed additional medications to reduce acid production by her stomach. To our dismay, other than her sinuses things did not improve as the week progressed. We visited a GI guy (GI for gastrointestinal) on Thursday (September 3), who felt that the off-and-on stomach and esophageal pain over the last few years needed further scrutiny. So...next week will be a busy one. On Tuesday, Pat will have endoscopy of her upper GI system. The good doc will stick a fiber optic lens into her throat and visually search for ulcers or other problems as he slowly threads it to a bit beyond her stomach. Then, on Thursday, he will use ultrasound to visualize her liver, gall bladder, and pancreas (important digestive organs). Finally, on the following Monday, unless findings dictate otherwise, he will conduct a stomach-emptying procedure to make sure food moves properly into her small intestine. Mulling over these procedures, one can't help but feel conflicted. On the one hand, you want to find a problem that can be identified and easily addressed. On the other hand, you don't want to discover a major problem that requires surgical or other dramatic intervention. In spite of this additional pain, we are still able to go on walks most evenings. Although Pat is prone to moments of overwhelming despair on a daily basis (nothing wrong with an occasional meltdown), she has found new resolve with the partial reprieve of the past two months and continues to cope better than in times past. Please pray that she tolerates the upcoming procedures well; that they will yield useful information to help resolve the recurring problem; and that she will eventually experience much greater relief from the plague of pain.
By the way, there is no sign of CRPS/RSD pain, unless it is contributing to Pat's tailbone pain. There is absolutely no burning in her shins or ankles. By way of update, our wonderful friend and fellow ketamine warrior, Lindsay Spengler, writes of her miraculous near-complete recovery at her personal blog (http://www.caringbridge.org/visit/lindsay). Upon undergoing her coma, she was literallly in the grasp of death. And the story of John Roach's recovery following a ketamine coma while we were in Mexico in June was related in an issue of People magazine last week (http://www.rsdfoundation.org/PEOPLE.htm).
And now for some sobering reflection. Since July 15 of last year, when we flew to Mexico for the first of Pat's two ketamine coma treatments, we essentially lived in Mexico for 3.5 months (107 days) of the year that followed. This insane amount of time was accumulated during five trips in July-August (31 d) and December (15 d) of last year, and February (4 d), March (8 days), and May-June (49 days) of this year. As much as I came to love and respect the wonderful people there, I'm embarrassed by how little Spanish I learned. Dios bendiga a nuestras almas!
August 28, 2009 (happy times continue) – I apologize to those who check this blog regularly (thank you for inquiring) for getting so far behind. I’m posting two updates (including the one below) at once to fit in all the positive news. Pat continues to enjoy a relative amount of pain reduction. For most days, her pain stays below a “5” for much of the time, particularly if we don’t travel anywhere, as sitting really fires things up. Recently, she has suffered from flu-like symptoms that have royally upset her GI system, but she now seems to be on the upswing. She continues to read voraciously and is now checking email daily. There is some despair about the lack of productivity in her life—she really misses her former employment—but that’s to be expected.; this continues, for her, to be a life-changing experience that she can't yet escape. We had a lengthy phone conversation with her neurosurgeon last Friday, and he is recommending injections into her fussy piriformis and obturator internis muscles to help calm them down and the continuing nerve irritation. We’re mulling this option over. Last night was exciting: the Cottonwood Fire that started a few miles from our home became a popular attraction among neighborhood residents, as the slowly approaching line of fire was readily visible (see photo below). This morning was less exciting: our house now reeks of smoke. We learned the fire is only 5% contained (as of late morning), but the wind is very low and…well…these events are fairly common in our area, so we have little to fear. In years past, we’ve often been entertained by close-up views of helicopters doing their work to suppress the flames (see photo below). It’s always impressive to see our tax dollars at work.
Helicopter picking up water to douse the flames of a 2003 fire behind our home.
Photo: William K. Hayes
Pat and her son, Nico, join the neighborhood gawkers entertained by the Cottonwood Fire in the background.
Photo: William K. Hayes
August 13, 2009 (happy times) – Things continue to go well for Pat and all of us who are around her. Many good things have happened the past few weeks. Immediately after her July 22 ECT treatment, Pat had her PICC line removed from her arm at last. She was so happy! We continue our evening walks on a near-daily basis, either in our neighborhood, at nearby Bautista Canyon, or in the mountains. The pain continues to make sitting difficult, so she has driven only a few times. However, we've attended church (for the first time in 2 years!), we attended a play at a local theater, she is finally able to focus well enough to read, she's enjoying cooking once again (which I greatly appreciate…my fixin’s are simple and dull by comparison), and she goes shopping with some regularity. My oldest daughter, Jessica, is visiting, and it’s really great to spend time with her. We took her and Pat's son, Nico, to visit the Forever Wild Animal Sanctuary in the High Desert last week. This facility benefited earlier this spring from the Extreme Makeover: Home Edition (which aired on TV), and it really looked awesome. Joel Almquist, owner of the facility and a fellow snake enthusiast, gave us a wonderful behind-the-scenes tour. Some of my students joined in on the fun. I think that Pat's face was probably hurting by the end of the day, as she smiled continually. Who wouldn't, when in close proximity to the gorgeous tigers, lions, leopards, bobcats, parrots, tortoises, and snakes—most "rescued"—that find a loving home here.
Joel Almquist of Forever Wild gets some lovin' from one of his huge tigers.
Photo: Pat Barry
Father (Bill) and daughter (Jessica) enjoy a scaly Gila Monster—a placid but highly venomous lizard.
Photo: Pat Barry
July 26, 2009 (Pat's story in the Press-Enterprise) – Mark Muckenfuss, a reporter for our local paper, wrote a story about one of our rattlesnake research projects several weeks ago. He learned of Pat's condition and wanted to write a story about her as well. It appeared in yesterday's edition of the Press-Enterprise; you can read it by clicking here.
Pat's ECT regimen (8 treatments) was definitely helpful. The past two weeks (described in the ECT Jul '09 tab) were pretty awesome. We are out on regular walks now and she is handling hikes even on moderately steep trails quite well. I'm beginning to believe that hiking makes a demand on her pelvic muscles that tells them to stop their inappropriate spasm. As in December-January when she was doing so well, I think we need to really push the walking. She is now on “maintenance” therapy, which will involve occasional treatments spaced out at increasing intervals. I'll continue posting occasional updates hereafter at the Current blog.
We returned to Idyllwild today for the second time in as many days, and enjoyed a hike on the Ernie Maxwell trail.
Photo: William K. Hayes
July 1-24, 2009 (ECT treatments...again!) – please click on the ECT Jul '09 tab. Unfortunately, the steroid pack and Flector patches prescribed last week brought no benefit whatsoever, nor has the Zanaflex muscle relaxant that Dr. Cantu prescribed before we left Mexico. If you're wondering why we are trying electroconvulsive therapy (ECT), there are published papers documenting its efficacy for treating chronic pain...and Pat probably had benefit from ECT in her two prior treatment series (see tabs for those blogs).
June 25, 2009 (back in California) – By now it's clear: nearly 3 weeks after her second coma, Pat's CRPS/RSD pain has definitely eased up and may be gone altogether. The ketamine did its job. There is essentially no burning in her shins or left wrist, but her bum still burns like crazy. We assume much of this latter pain is from the entrapped nerves and muscle spasm in her pelvis. Yesterday, we visited Dr. Filler in Los Angeles. After a careful physical exam (he knows where to press with his fingers), he explained that the obturator internus muscle appears to be in considerable spasm, and until it calms down—which it should following his nerve decompression surgery in April—it will continue to irritate her pudendal nerve. The atrophying piriformis muscle that he cut away may not be much of a problem; this was the muscle that appeared hyperintense in the MRI imaging from Mexico (see the Coma (Jun ‘09) tab). He gave her a steroid pack and Flector (NSAID) patches to hopefully reduce any inflammation associated with these muscles and the surgical site. Looks like we're basically in a waiting game: how soon will the muscle and irritated nerves finally settle down? More troublesome: how long can Pat hold out?
June 3, 2009 (a message from Pat’s daughter, Shannon Golden) - I don’t know how my mother and step-father have managed to cover enormous medical bills the past two years. Later this summer, my fiancé and I are going to put together a fund-raiser to help out. In the meantime, however, I’m worried about my mother’s condition and her ability to get much-needed treatments. It is so difficult to ask for help, but if you or someone you know would like to contribute, just click on the “Donate” button. Actually, your prayers would mean more to us and probably do more good than a monetary gift. So too would words from the heart (check out the Comments tab); I would love it if you could write a brief note of encouragement to my mom and send it to my step-father's email address (whayes *AT* llu.edu). Please indicate if you prefer to have your name removed if it is posted at the website.
May 31 to June 21, 2009 (Ketamine coma #2) – please click on the Coma Jun '09 tab
May 30, 2009 (here comes coma #2) – Pat's GI tract is definitely settling down, though she's developing a bit of GERD (gastroesophageal reflux) again. To our surprise, her pain has also improved a bit, and is definitely better than when we first came to Mexico. It’s amazing to us how gastrointestinal pain can mask any ketamine-derived benefit! The flare-up following surgery seems to be behind her now. However, her pain still hovers around a “5” much of the day (but is even lower in the evenings), and she knows that things could worsen again. Food is not very appealing, but she's getting it down...enough so that she has asked for a personal pan pizza four evenings in a row—a good sign to me. She has gone on several walks with me, either around the motel parking lot or across the bridge to the adjacent mall. We actually visited the mall twice yesterday, which was good for emotionally. She is regaining some confidence that ketamine really does work and that there just might be a decent future yet.
She is scheduled to begin the coma tomorrow morning (Sunday). I'm 95% confident she'll follow through with this. As you can imagine, there is some fear and hesitation. Her 25-year-old daughter, Shannon, has become the hero of the hour. She gave her mother an extraordinary pep talk last evening on the phone. To be more accurate, it was beyond extraordinary. I know that it really boosted Pat's courage and willpower. THANK YOU!!! And then today, Shannon forwarded some beautiful messages from various friends, most of whom are total strangers to Pat and me. I'll paste them into the Comments tab if you'd like to read them. I know guys aren’t supposed to be overly emotional, but such inspirational words do get to me…
May 23, 2009 (still in Mexico…) – We've been in a local motel in Monterrey, Mexico, for two nights now. As explained below (May 18 comments), we were getting nowhere with substantial ketamine doses, in large part because Pat's gastrointestinal system conducted a full-blown rebellion. She still has considerable stomach/abdomen pain and finds it a struggle to eat at all. She's managing to get in close to 1500 calories a day, thanks largely to Ensure and Isopure drinks. She forces herself to get up and walk back and forth in the room. Today, she managed to leave the room on a walk with me to the across-the-street mall to visit the pharmacy there; unfortunately, the effort just aggravated her pain. The International Patient coordinators at the hospital were kind enough to give us two decks of playing cards, so we've been playing Rummy or Crazy-8's for many hours the last few days. It's a welcome distraction, particularly for Pat (I have endless work--fun for me--that I can always turn to on my laptop).
The details below (May 18) give a better picture of what has transpired, but here is where we are at presently. 1) Pat's pudendal/sciatic pain has not improved following surgery to decompress her entrapped nerves five weeks ago. 2) Her CRPS/RSD pain in her tailbone area has worsened, no doubt being aggravated by the surgery and now more so by the GI pain. 3) She also has burning pain (sometimes worse than other times) in her left wrist where she had i.v. pokes some months ago; in her left neck, where we discovered a small (presumably benign) nodule the night before flying to Mexico; in her right big toe, which she stubbed pretty badly a month or more ago; in her lower back at the site of an epidural block a week ago, which only began to hurt yesterday and is now quite sharp; and her left shin and ankle, which have burned for more than two years with a temporary reprieve following lots of ketamine (but hey, the pain is gone from her right leg for now!). 4) Considering the direction things are going (need I say more?), Dr. Cantu is going to look into the option of giving Pat the coma treatment once again. Unfortunately, the decision is not his to make, but we should have an answer soon. The longer we have moved beyond the coma last summer, the worse things have gotten. We can only hope that Pat's coccygectomy last fall and the recent nerve decompression surgery bode well for a better and more lasting outcome this time around. We also know better how to avoid the benzodiazepine withdrawal that was a problem with her coma last time.
Some of you have expressed concern about how I am doing, and how I am able to manage my job while here in Mexico. All I can say is that I'm doing just fine, focusing on what's important and needs my attention. When I must take care of work (by email mostly, sometimes by Skype phone), Pat is understanding and supportive. My job is not in jeopardy; my students are terrific, understanding, self-motivated, and working diligently on their studies. And I've actually gotten three journal manuscripts completed since I've been here, which for me is something to celebrate!
May 18, 2009 (ketamine boosters in Mexico) – It's hard to write when things aren't going well. We're still at the hospital and having a tough time in Mexico. The first 4 days were okay, but between Pat's pain condition (pudendal neuropathy and CRPS/RSD) and the medications (particularly the opioids, which she had to resort to a few days here and there), her GI tract was not working well the past few months and it really got in the way of things here. Sparing some details, things weren’t moving well through her system, and in an effort to nudge things along, her gastrointestinal system is now moving too fast and furious. For the past 10 days, she's had extreme stomach/intestinal cramping with hyperactivity, despite a number of medications to slow down the smooth muscle contraction. The doctors are baffled. Of course, it makes her other pain areas hurt, too. She wanted ketamine to help work through this but hasn't really gotten anywhere, so we gave that up yesterday evening. Nine boosters in all—eventually reaching 2,000 mg during 3-hour infusions (double-whopper doses)—and we haven’t gotten anywhere it now appears. And that was in addition to a continuous ketamine drip eventually reaching 40 mg/hr (another 800+ mg/day). At this point, we're basically waiting for her GI tract to calm down and see where we stand. So far as we can tell, there's been no improvement from her pudendal and sciatic nerve decompression surgery. But one moral victory arrived this week: we learned that our insurance will cover the cost of this surgery. Whew!
On a positive note, we've enjoyed getting acquainted with Lindsay Spengler, one of the better known former coma patients. She and her gracious mother, Sharon, have been here for more than a month now. We had emailed and spoken on the phone with this courageous and headstrong 25-year-old lady a number of times since Pat's coma. Lindsay nearly died from her own severe case of CRPS/RSD before undergoing the coma several years ago. The Germany program refused her because she was in such bad shape, having been fed for years through a stomach tube and enduring a tracheotomy at one point because of respiratory failure. However, she has improved dramatically since her coma, though not without setbacks along the way. She finally had her tracheotomy closed surgically during this trip and her CRPS/RSD flared frighteningly, as expected (surgery is always risky for CRPS/RSD victims). She has bounced back quite well at this point thanks to massive ketamine doses. We’ve enjoyed our nearly-daily visits with the Spenglers, and Lindsay has been quite an inspiration. Thank you Linsday and Sharon!
Fortunately, the swine flu has not been an issue. The first week, roughly half the people in public areas of the hospital were wearing masks, but virtually no one is doing so now. Monterrey had only a handful of cases; influenza A (the typical one) has actually been a much greater risk here.
We're getting very little sleep and the food and television are both losing their appeal. Boring would be a good descriptor. Fortunately, I can get my head elsewhere, as I've been working on several manuscripts and communicating regularly with my understanding and hard-working students (these are graduate students who know how to function relatively independently). Pat has less distraction, which is very difficult for her. I spend long hours rubbing her feet...and trying to stay awake while doing so. She's still got some fight in her.
Pat and Lindsay take a break from their exchange of war stories.
Photo: William K. Hayes
May 2, 2009 (back to Mexico for more boosters) – Pat’s surgery 10 days ago appeared to go well, but as feared, the surgery itself has apparently aggravated Pat's CRPS/RSD pain, which is worse than the pain from nerve entrapment and its resulting muscle spasm. So...we went to Los Angeles for ketamine boosters on Thursday and Friday (30 April and 1 May), and Pat experienced no apparent benefit. Clearly, we are back to where she needs a LOT of ketamine to get her pain to calm down again. Thus, we are returning to Mexico for additional boosters—and possibly even another coma procedure. We know that the ketamine, if adequate, can knock out the CRPS/RSD pain, at least for the short term. Our hope is that by eliminating a major trigger for its return—the pinched nerves and associated muscle spasm in her pelvic areas—we can knock out the CRPS/RSD for a much longer time, perhaps for good. This should also greatly speed up the reduction in pain expected from the surgery. Incidentally, former coma patient Lindsay Spengler is there now, and we are really looking forward to meeting her.
Of course, there are travel and other complications that could arise from the current swine flu epidemic. Obviously, we are taking some chances in heading to Mexico, especially without having any effective oinkment to fend off the flu virus. There are additional health risks with the treatments given to Pat, and ketamine is always an exceedingly unpleasant experience, which just about drives her (and me) insane. This is our fifth trip to Mexico—the coma last summer and now four sets of boosters. We can certainly use your continuing prayers.
April 26, 2009 (nerve decompression surgery) – Pat had surgery three days ago to free up two entrapped nerves (sciatic and pudendal) in the left side of her pelvis. It takes some time for improvement to be seen (weeks to months; possibly more than a year), particularly for patients who have had the nerves entrapped for years as she has. The surgery appeared to go well; Dr. Filler told me that her nerves were very obviously tight in their space; he had trimmed away some muscle that was entrapping the nerves; and he had freed up the fibrotic lesions that are typical of nerves entrapped for an extended length of time. He was optimistic this would help, but again expressed concern that her pain had been of long duration. Of course, I’m thinking optimistically…I just don’t know how else to live. Pat tolerated the experience reasonably well. She had reasonable pain relief the night she spent in the hospital (thanks to fentanyl) and some relief the following day (with oral dilaudid), but she is now experiencing some skin flushing (histamine release, which has become a big problem when she occasionally turns to opioids) and nausea and does not want to go up on the opioid doses. She has to rapidly escalate with opioids as they very quickly lose effectiveness, suggesting she rapidly develops tolerance and opioid-induced hyperalgesia. Her condition and relative intolerance of meds is such a pain in the butt (quite literally).
April 9, 2009 (transcranial magnetic stimulation) – Pat has faithfully plugged away with the TMS, but after 11 treatments and absolutely no discernable improvement, either for her pain or depression, she is giving it up. We’re still awaiting word on when Pat’s decompression surgery can be scheduled. And insurance is giving us a hard time…it takes some real effort to write these appeals…
April 1, 2009 (MR Neurography and more injections) – Last week, I got very excited when I discovered two new papers by Dr. Aaron Filler, of Santa Monica, California, on his amazing success treating pudendal neuropathy. Only about a dozen surgeons in the world perform this very specialized procedure, and the success rate up to this point has left something to be desired. Heretofore, most patients desiring the surgery have traveled to Dr. Roberts' group in Nantes, France. Pat was diagnosed with unilateral pudendal and sciatic neuropathy in 2003, but we were strongly advised at that time not to consider surgery. Dr. Filler employs the latest technology to pinpoint the sites of nerve entrapment. He holds patents for processing conventional MRI images, which allows him to visualize inflammation within the nerves. He has reported better than 85% success in 149 patients, and his incisions are less than 1.5 inches long. In other words, we found the right guy with the right amount of expertise and experience—and without having to travel a substantial distance. So today we visited him for the physical exam, then drove over to the MR Neurography center in Pasadena, and then returned to Dr. Filler’s clinic for open MRI-guided injections to confirm his findings. I was very impressed when he showed me Pat’s MR Neurography images, in which a hypertrophic left piriformis muscle was obvious, as well as inflammation of her left pudendal nerve at Alcock’s canal (obturator internus muscle) and at the sciatic notch (piriformis muscle). Her sciatic nerve was also inflamed at the sciatic notch. She obtained brief pain relief following injections of local anesthetic and steroid into the muscles, confirming that surgery might also bring about pain relief. So…we’re eager to learn when we can schedule surgery and hopefully take care of this major trigger for pain.
March 27, 2009 (transcranial magnetic stimulation) – Wouldn’t you know, Pat’s traveler’s diarrhea continued well into the week, and it may have upended any benefit from the ketamine. Unbelievable! But as her condition slowly resolved, I am now frequenting the bathroom as well; somehow we both picked up an undesirable bug in Mexico. Loma Linda’s transcranial magnetic stimulation (TMS) device became operational this week, and Dr. Warnell, as he promised, used Pat for training purposes so that she could get the earliest opportunity for treatment. Today was her third daily treatment (the protocol calls for 20 in all, 5 per week for 4 weeks), and we’re seeing no benefit yet. The machine makes an intense clicking sound, and though it does not penetrate her skin or skull, she feels a rapid, rather uncomfortable hammering sensation to her skull. Sitting in one place for an hour is exceedingly difficult, but she is determined to make this new modality work for her. We’re holding our breath, hoping this will do the trick. And our insurance, of course, says they won’t pay for TMS, even though it is FDA-approved; they are still trying to decide on their policy. Another heavy out-of-pocket expense…
March 22, 2009 (ketamine boosters in Mexico) – After 4 daily boosters and 6 days of continuous ketamine infusion, we are now at a local motel—one we have not been to previously—and both looking forward (me) and dreading (Pat) our return flight home tomorrow. Pat, unfortunately, appears to have developed traveler’s diarrhea. It’s definitely aggravating her pain and making us worry. We’ve learned that the ketamine benefit may not be apparent for several days following boosters—perhaps because of heightened perception of physical sensations while the ketamine is working its way out of the brain—so we are nervously waiting to learn whether any good will come of this.
March 15, 2009 (back to Mexico) – Well…after four ECT treatments, it appears that ECT (including small ketamine boosters of 100 mg) was not getting us anywhere with Pat’s current pain levels. We had hoped that the ECT would be as efficacious as ketamine. So…we’ve given up and are flying back to Mexico today for some really big ketamine booster. We pray that this next set will get Pat back to where she was in December and January. These trips are costly and they are adding up…
March 6, 2009 (back to ECT) – Pat’s toothache continues to bother her, though it has lessened somewhat. Second opinions and evaluation of the adjacent tooth, which had a root canal last September, revealed no tissue issue whatsoever (pardon the delightful alliteration). The discomfort is nothing more than the exaggerated nerve pain that many CRPS/RSD patients suffer <sigh>. Unfortunately, this tooth pain apparently hindered any benefit from her February ketamine boosters in Mexico. This was tough to swallow. We’ve decided to try ECT once more and see whether it will improve Pat’s worsening pain in the absence of ketamine. Her first treatment went okay this morning except that she apparently bit her tongue (this sometimes happens despite a bite block). Dr. Warnell is using ketamine this time to put her to sleep first, which gives us more optimism that we will get somewhere with this treatment.
This blog, of course, is about my wife. I’ve tried not to talk about my life, career, or issues. However, today was exciting, as I picked up the mock copies of my co-edited volume, The Biology of Rattlesnakes. As the lead editor, I devoted well over 500 hours working on this 50-chapter project the past few years. I just wish it was completed earlier; my wife’s illness made work very difficult during much of the past two years. The official copies should be back from the outsourced bindery soon. I’m pleased with the cover (see below) and more details are at http://www.williamkhayes.com/rattlesnakes/volume.htm.
The Biology of Rattlesnakes – a compilation of original studies about a charismatic creature whose venom just might, perhaps, one day provide a treatment for pain…just as cone snail venom already has. (One can always dream, right?)
March 1, 2009 (Botox injections) – Pat’s pudendal and sciatic neuropathy (left side only) seemed as bad as ever, so we visited CAST again (Center for Ambulatory Surgical Treatment) in Los Angeles for Dr. Jordan to give her a hypogastric (sympathetic) block and Botox injections of her pelvic floor muscles, which clearly are in spasm. This was done two days ago under ketamine and fentanyl anesthesia. That afternoon and evening, her pain was remarkably low, as well as the following morning (yesterday). This was the most effective sympathetic block she’s ever had. Unfortunately, the relief was short-lived, returning later yesterday and is quite bad again today. The Botox, of which she’s had a good half-dozen times previously, takes at least three weeks to kick in. It partially paralyzes the muscle, thereby reducing the muscle spasm and accompanying pain. So far as we can tell, her last few sets of Botox injections have not helped, but the return of obvious pudendal/sciatic pain following the coma prompted us to give it another try. Perhaps the most exciting outcome was learning more details from Dr. Jordan on his new transcranial magnetic stimulation (TMS) device. His machine arrived several months before Loma Linda’s, and his preliminary findings were looking promising for pain. I was discouraged from my reading because most studies used this powerful electromagnet to stir up things in the motor cortex of the brain, and the analgesic effects were short-lived. However, he was using the protocol used for depression—stimulation of the left prefrontal cortex—and he was expecting long-lasting pain relief. Pat is presently in line to be the first given this treatment once Loma Linda’s unit is in place later this month. Today’s news gave her just a bit more hope to keep going.
February 11, 2009 (another root canal) – With the acute tooth pain, we arranged an emergency visit to an endodontist today who discovered that her partner’s root canal a year ago had missed a root—yes, the tooth had four roots—so this was nuked today. Ouch…
February 10, 2009 (ketamine boosters in Mexico) – We flew home from Mexico today; it was a painful and difficult trip for Pat, as expected. After 3 consecutive days of large ketamine boosters (900-1000 mg) with a continuous drip over the entire period (20 mg/hr), we are hoping to realize some benefit. I greatly appreciate the approach that Dr. Cantu takes. Although Pat complains frequently of feeling confused and spaced-out, she does not experience the headaches, bad nausea, or dreaded vibrations she has experienced previously. The addition of midazolam (Versed) to the ketamine drip really seems to smooth things out. Unfortunately, after stopping the drip, Pat was crushed to learn that her tooth pain persisted. This is worrisome to us all, and we're going to have to get more aggressive in finding a cause. We are learning that the first day following a series of boosters can be difficult, with a return of substantial pain and, today, an unexpected skin flush and light-headedness. However, we are hoping, as happened last December, to see a dramatic reduction in pain, particularly in her shins, over the next few days. We are praying this is the case once again!
February 5, 2009 – Pat's pain has continued to escalate. Willing to do anything short of opioids to avoid returning to ketamine, Pat underwent two sessions of hypnotherapy. I suspect this approach has met its match with CRPS/RSD, but it's worth returning to. Unfortunately, Pat's tooth pain from work done in September has flared up again; the dentist and endodontist don't know why, but they shaved down her crown a bit and gave her an oral antiseptic to hopefully reduce the inflammation. After I traveled to Seattle all day Wednesday for a board meeting (the Insular Species Conservation Society), Pat decided it was time to say “uncle.” Dr. Cantu was gracious enough to let us return to Mexico for more ketamine, so I made arrangements to fly out tomorrow morning. I have to admit that my visit to Seattle, though a very long day (I did not spend a night), was a nice break; it was the longest I've been apart from Pat for nearly two years. She was on my mind continually.
January 27, 2009 – We flew home from Tampa today. Things have completely fallen apart. Although we greatly enjoyed visiting with Pat's sister, Suzi, and her husband, Dan, Pat's pain escalated through the weekend. Her left ankle (the one she nicked with a razor) now shows an obvious red coloration after taking a shower—an ominous sign. She completely fell apart Monday while driving to Dr. Kirkpatrick's. She held up well for the post-coma interview, but fell apart again that evening and Tuesday (yesterday) morning. Fear...fear...fear...of the pain, of more ketamine, of losing the ground she had fought so hard to win. I'm alarmed...and wish we could get ketamine ASAP to reverse things, but Pat isn't willing yet to accept this option, though we did inquire to learn whether Dr. Kirkpatrick could fit a booster in (and he could not).
January 22, 2009 (Visiting Dr. Kirkpatrick in Florida) – We flew into Tampa yesterday (Thursday) to visit Dr. Kirkpatrick on Monday for Pat's 6-month post-ketamine coma follow-up. Dr. Kirkpatrick administers the Mexico ketamine coma study. We are staying at the Tarpon Springs vacation home of Pat's sister, Suzi. The flight was difficult for Pat but tolerable. Good things have continued for us. Pat pulled out her flute and played it. However, she's been fighting an apparent flu that has given her sinus and stomach misery. The added stress on her worries me. On top of that, she nicked her ankle with a razor and it appeared to become slightly infected with some pain. Very worrisome. Today, we hiked at nearby Howard Park and Honeymoon Island--a beautiful place with broad beaches and a delightful trail through a pine forest with tons of nesting Osprey and a pair each of nesting Great-horned Owl and Bald Eagle.
A brief squabble between an American Oystercatcher (left) and a Laughing Gull (right). Also, the nesting pair of Bald Eagles.
Photos: William K. Hayes
January 18, 2009 – Although Pat continues to suffer moderate tailbone-area pain, her shin pain has completely disappeared. I believe that we have knocked out completely the RSD/CRPS component of her pain. With the change in fortune, we have been hiking on a near-daily basis the last three weeks. We greatly enjoyed this past weekend in San Diego. Yesterday (Saturday), we arrived late in the afternoon and appreciated a long walk along the San Diego River Channel. In addition to the birds we saw, nearly two-dozen abandoned cats were along the north jetty, where some gracious soul is setting out food and water to sustain them. Today, we located and photographed the pretty Mangrove race of the Yellow Warbler (2nd California record) near the channel, and then walked all about at the San Diego Zoo, enjoying the warm weather.
The pretty male Mangrove Warbler, a very rare visitor to California from Baja, Mexico!
Photo: Pat Barry
December 18, 2008, to January 11, 2009 (ECT) – please click on the ECT Blog (Sep 2008) tab
December 17, 2008 (pre-ECT) – Now that we have returned from Mexico with a PICC line in her arm, Pat is willing to return to ECT to hopefully gain more control of her pain and depression. With the PICC line in place, she is hoping to avoid the pain and stress associated with repeated i.v. pokes, which led her to discontinue the prior ECT treatments. We had appointments yesterday with her primary psychiatrist (Dr. Grace Reid) and the ECT psychiatrist (Dr. Ronald Warnell) at Loma Linda University Medical Center. Afterward, we went to Urgent Care to get the blood test, chest x-ray, and EKG completed. Today, we visited one of her primary care doctors for the physical and collected the test results to turn in to the ECT coordinator. The good news: we can probably begin on Friday, the 19th and get in three treatments before Christmas (whew). Yesterday, her pain was considerably better than at any time during the past couple of months; however, today was not so generous. I spent the evening reading aloud to her some of the published papers that document the efficacy of ECT for pain, as she wanted to boost her courage and belief that this crazy stuff can work.
December 14, 2008 (ketamine boosters in Mexico: day 10) – Well...we have certainly been going through another crazy experience in Mexico. On Wednesday, Pat awoke with very bad pain in spite of the high levels of ketamine (daily boosters and a constant drip up to 30 mg/hr) and the partial caudal block. Her pain worsened as the day progressed and we questioned whether we would get any benefit whatsoever from the treatments. We decided that she was experiencing either benzodiazepine withdrawal (I'll spare you the reasoning) or a bad reaction to the partial block. So...Dr. Cantu ordered her compensatory benzos, removed the epidural catheter, and withheld a ketamine booster for that day. Overnight, things calmed down considerably, so he resumed giving the daily ketamine boosters on Thursday. Seeing more improvement by Friday, we postponed our return from Saturday to Monday so that she could get in a few more days of boosters. Yesterday (Saturday), she had a bad "trip," waking up quite agitated and absolutely convinced that I had irreversably poisoned and killed her. Must've been a hallucination while asleep (she occasionally sits up wide-eyed and shouts "no" during a booster) combined with the distorted body awareness and vision that persist for hours upon awakening. It took close to an hour to get her calmed down with lots of gentle talk and more medication. Crazy...or "la ketamina loca" (the crazy ketamine woman), as we would say here. The wide-eyed nurses, fortunately, have seen a lot of ketamine patients and take this stuff well in stride! Other than this incident, I'm seeing a more upbeat and happy-go-lucky Pat. Today (Sunday), she'll have an increased drip rate and just skip the booster as we prepare for our departure tomorrow. We enjoyed an afternoon stroll to the Pediatrics unit on floor 3 (see photo). I really like this unit because of all the beautiful children’s art on the walls and the stained glass windows. Once again, we are very impressed with the quality of care that she has received here in Mexico. Dr. Cantu is first rate, and the nursing staff work hard and are very patient in spite of our language difficulties. Pat's pain has not left completely (no surprise to us), but at the moment is definitely much less. How long this "holds" remains a big question. Dr. Cantu believes that there is somatic pain (from muscle and/or connective tissue) in her tailbone region that responds less well to ketamine than the neuropathic pain (RSD/CRPS) and triggers the continuing neuropathic pain. Pat is willing to undergo ECT again upon returning to California, and we have made arrangements to get this process going, including the care of her PICC line. Hopefully, we'll beat this thing yet. My heart goes out to Pat for her tenacity and courage. There are no words to describe adequately what she has gone through the past two years in terms of the pain and the brutal treatments for it; the psychological devastation from losing her job and close association with friends and family; and the overall impact on her quality of life. Thank you for your continuing prayers; she will most definitely need them over the holiday season. And feel free to send her a note of encouragement at pebarry27*AT*gmail.com.
Pat, with continuous ketamine infusion, enjoys her visit to the Pediatrics unit with colorful children’s paintings.
Photo: William K. Hayes
December 9, 2008 (ketamine boosters in Mexico: day 5) – I haven't been up to writing daily updates, mostly for lack of time, but things have gone mostly according to plan. Pat needs a lot of attention, as she could easily fall trying to get out of bed. I've also spent a few hours here and there trying to get some of my work done by email. Pat has had increasingly larger ketamine boosters each day since our arrival Saturday at the hospital. Fortunately, she's tolerating the ketamine remarkably well; today she had 1,000 mg in 2 hours and was alert much of the time (which is pretty amazing). She wakes up very sweet and affectionate, without hallucinations or the dreaded vibrating sensations. She's also tolerating well the continuous low-dose ketamine infusion with no headaches or nausea. On Sunday, Dr. Cantu placed an epidural catheter in her spine to deliver continuous local anesthetic (a partial "block"). He has been astonished that, in spite of the numbness, Pat has been up and walking the hallways and visitor area (with me walking behind her with my hands beneath her armpits—just in case). More good news: there seems to be no more skin flushing (praise God); the yeast infection has subsided with a new medication; and her digestive tract seems to be working well once again. There is, unfortunately, still some pain in the tailbone area...hopefully to diminish further. The biggest drawback is that Pat feels mild confusion and/or memory impairment from the ketamine (she asks over and over what the "plan" is) and is a bit distressed by the numbness in her hands and lower body. Neither of us has gotten much sleep, either. Perhaps having discontinued the antidepressant—which we now suspect and hope was causing the uncomfortable skin flushing—she seems a bit depressed. I was expecting the ketamine to improve her mood, as it has in the past, but it's just not happening for some reason. This evening, I read some email and other stuff to her, and I think she's coping better. T'was a good day. For those of you praying on her behalf, thank you...and keep the prayers coming!
December 6, 2008 (ketamine boosters in Mexico: day 2) – After arriving at the hospital this morning, we were so glad to see Dr. Cantu when he walked into our room. After a discussion to formulate a plan, he began by giving Pat a sizeable ketamine booster of 600 mg over 2 hours through an i.v. line. Following that, Pat slept peacefully for about an hour and then, in her words, was "waking up sweet." Soon, she had a good meal and then began a continuous 20 mg/hr ketamine drip. Tomorrow, Dr. Cantu will place a PICC line for the remainder of her infusions (no more i.v. pokes!). He will then insert an epidural catheter in her spine to infuse some steroid to calm down the nerve inflammation and to deliver a continuous pelvic/caudal block over the next few days with local anesthetic. He may also give her a left-side-only or bilateral pudendal block, which would involve injecting a steroid and local anesthetic into Alcock's canal, where the pudendal nerve traverses to supply various pelvic organs and tissues. Thereafter, Pat will have the continuous ketamine drip, the continuous pelvic/caudal block, and get a large ketamine booster each day for the next 4-5 days. At that point, we'll evaluate where things are at. I like the plan and have a real good feeling we're going to get somewhere with it. Now that a major pain generator has been removed—her hypermobile tailbone—we hope that the pain reduction will last this time. Now...if we can just kill the stupid yeast and avoid succumbing to gastroenteritis before we leave...
December 5, 2008 (ketamine boosters in Mexico: day 1) – Well...Pat and I are back in Mexico without incident this evening. As many of you are aware, Pat's pain has become intolerable once again, and we needed serious help. It was a long trip, difficult for Pat, but the airports and planes were relatively uncrowded and we had no trouble making our connections. Thank you, Carl, for dropping us off at the airport. And thank you, Elena, for arranging our taxi in Mexico. We will check into the hospital tomorrow morning and Dr. Cantu will then decide just how to proceed. He is anticipating a multimodal approach, with some combination of ketamine infusion, epidural block with local anesthetic, and/or epidural steroid. He sounds willing to install a PICC line in her arm (which can last for months) rather than the standard i.v. lines that must be replaced frequently and, with each start, cause Pat so much pain and distress. If we are allowed to leave the hospital with the PICC line in place, I think Pat would be willing to return to electroconvulsive therapy (ECT) upon returning to California, and hopefully get her pain sensitization more fully reversed. As some of you recall, she was doing so well last September when her arms simply couldn't tolerate the repeated i.v. pokes to continue with ECT after completing 6 treatments. Since then, a combination of dental problems, surgery (to remove the intrathecal pump and her tailbone), bizarre flushing events (which increased following surgery but now seem to be waning after weaning off Lexipro, her antidepressant), and a yeast infection that won't go away have really exacerbated her pain again. I can't believe how willing and enthusiastic Dr. Cantu is to help us out; what a blessing he is to so many pain patients and their families.
November 27, 2008 (Thanksgiving) – All things considered, Turkey Day was a good one for us. In the weeks following the surgery, we lived most of the time in my Grandmother’s apartment in Loma Linda rather than drive to and from our home in Hemet 40 minutes away. Pat’s flushing continued at a worrisome level, happening 8-10 times a day. Though the skin changes were not dramatic, she had a near-continuous reddish glow (see photo below) and the flushes were very uncomfortable internally, especially in the throat and chest region. To identify a cause, it seemed we had an appointment every day or so to see one specialist after another, to give up assorted samples (blood, urine), and undergo a series of tests (including MRI of the brain). Fortunately, she tested negative for all of the likely conditions that might cause flushing and inflammation, including various cytokine-secreting tumors, pituitary gland problems, rheumatism, and other just plain nasty stuff. During this period she weaned completely off of Lexipro and discontinued taking Remeron for sleep. We’re a wee bit suspicious she was experiencing serotonin syndrome-like symptoms. Unfortunately, the flushing exacerbated her pain further and she finally resorted—at my urging—to taking opioids for the short term. We’ve decided to return to Mexico next week for more ketamine therapy, and hope that the opioids will help her survive until then. They certainly helped on this day, which we spent with her son, Nico, her daughter, Shannon, and boyfriend, Gabe. We had dinner at her mother, Marilyn, and sister, Gina’s, home in Hemet. Lots of good food and family…a wonderful distraction.
Pat’s skin flush on her thigh—obvious after several seconds of hand pressure.
Photo: William K. Hayes
October 26, 2008 (post-surgery) – We left the hospital quite frustrated with the way a large medical system works. Unfortunately, Pat continued to experience periodic skin flushing day after day, and no one from Internal Medicine showed up despite the requested consultation. We had hoped that the pump components were the cause of the more-or-less mild but permanent skin flush that Pat experienced the last few months after weaning off the pump medications. This does not appear to be case. We are concerned that there might be a tumor causing the flushing, and no one is willing to get on with the testing. In the meantime, Pat was unable to take any pain medications following surgery other than the small ketamine boluses. Anything else, including opioids and even i.v. Benadryl, caused an immediate dramatic flush. Her pain control following surgery was essentially negligible. Can you imagine this? On the bright side, Pat enjoyed occasional visits during the week from family members and my very sweet graduate students.
October 21, 2008 (surgery) – Today was the big day. We arrived at the designated pre-surgical area at the Loma Linda University Medical Center, and were pleasantly surprised to run into my biologist colleague, Dr. Jim Gibson, who was there (with his wife) for his own surgery. Jim kindly prayed for Pat, a gesture she much appreciated. As expected, her surgery went very well. Dr. Johnson told me afterward that her coccyx was barely attached at all and showed obvious bone degradation. Hopefully, we made the right decision. There was also a fair amount of weeping into the pump excision site, resulting in a rather large lump similar in shape to the pump itself. Dr. Carl Collier of Acute Pain Management kindly ensured that Pat received some ketamine during the surgery, but also gave her some opioids. He also set up a PCA pump afterward so that she could give herself up to four boluses of ketamine (10 mg) and dilaudid (0.5 mg) per hour. Unfortunately, she quickly “flushed” in dramatic fashion after a few boluses—the same dreadful pheochromocytoma-like flush (transient blotchy skin flush on chest and abdomen, tachycardia, and hypertension) she experienced repeatedly in March and April after the pump was implanted and the medications rapidly increased. Dr. Collier replaced the medication with ketamine only to avoid the opioids, which we knew were the biggest culprit. In essence, Pat did not get much pain control, but she was decidedly giddy from the ketamine and in good spirits.
October 20, 2008 (pre-surgery) – After all treatments at this point had failed to give Pat significant relief from the tailbone pain in particular, we made the decision to have her coccyx (tailbone) surgically removed. We have chosen a highly-respected Loma Linda University neurosurgeon, Dr. Walter Johnson. He will also remove the ineffective intrathecal (pain) pump from her abdomen. The decision to remove the coccyx was difficult; some pain physicians we spoke with adamantly recommended against it, whereas others were open-minded to it. Months ago, I conducted my own in-depth literature review on coccygectomy and determined that, from 17 published studies, the reported success (“good outcomes” in pain improvement) from a mean of 23.9 patients per study averaged 83.5%. Not bad! I concluded that many pain physicians recommend against the procedure because they see the failures rather than the successes. Moreover, the argument that the patient will be unable to sit on a painful bum thereafter does not hold well for someone who has been unable to sit on their painful bum for a very long time now in spite of essentially every other alternative treatment. Everyone who has examined Pat physically has agreed that her coccyx was broken once upon a time, as it now projects inward toward her bowel and is now “hypermobile” (moves readily)—a condition generally associated with a favorable outcome following coccygectomy. We believe this movement is a major pain generator. Incidentally, there was no obvious benefit from the ketamine booster on the 16th; we can only hope it slowed down the return of pain.
MRI image of Pat’s “hypermobile” coccyx (tailbone), showing the abnormal curvature inward.
Photo: a gigantic super-smart machine
October 16, 2008 (ketamine booster in Los Angeles) – Finally, Pat agreed to get a ketamine booster, as her pain has increased markedly the past number of weeks. I don’t think the extent is anywhere close to what it was before the ketamine coma. We arrived at Center for Ambulatory Surgical Treatment (CAST) in Los Angeles at the ungodly hour of 6:00 am. Just as they whisked Pat into the room to get her started, one of the most recent coma patients, Jaley Macdonald, arrived with her mother from Palm Springs to get her first follow-up booster. Pat briefly spoke with Jaley before she went under the ketamine, but has no recollection of the conversation and really regretted not getting the chance to spend more time with Jaley. Dr. Thomas Leverone is the kind soul who frequently provides ketamine at this facility. Pat took in 925 mg ketamine, while Jaley set a whopping new CAST record of 1450 mg in 4 hours—and she was awake and alert much of the time! We became familiar with Dr. Leverone and several other anesthesiologists at the clinic when Pat received 9 days of ketamine therapy there in December 2007, under the order of Dr. Sheldon Jordan, her pain physician at the time.
Two of our favorite physicians, Dr. Sheldon Jordan (left) and Dr. Thomas Leverone (right).
Photo: William K. Hayes
September 27, 2008 (post-ECT) – This past week was another good one following the ECT. Pat continued to keep herself busy, which helps to distract from the lingering pain. She even sat in a vehicle and drove her son one day to Loma Linda and back for a doctor’s appointment, a 1.5 hour round-trip and an AMAZING feat considering how painful her tailbone has been. However, she had some dental work done a few days later and by the end of the week was suffering an alarming increase in pain. Dental work has a real knack for increasing RSD/CRPS pain. Hopefully, this will calm down soon.
September 2-20, 2008 (ECT) – see Pat’s ECT Blog (Sep 2008) tab
August 17-31 (post-ketamine coma) – After returning from the 5-day ketamine coma experience in Mexico (August 16), we hoped to get Pat into electroconvulsive therapy (ECT) as quickly as possible. Fortunately, my employer—Loma Linda University—makes the treatments available through the Loma Linda University Medical Center’s Department of Psychiatry. Because Pat's gastroenteritis following the ketamine coma worsened and required hospitalization for 4 days in late August, we weren't able to begin ECT therapy for 3 long weeks. Life was very difficult during this time. Pat had to undergo a number of basic health tests to be eligible for the treatment, and the hospitalization interrupted this process. She suffered a lot of pain and discomfort with the gastroenteritis, and was understandably discouraged about ever getting well again. For the first time in more than a year-and-a-half of severe pain that she has endured, I, too, was also giving in to doubt. During this period, I tried to get caught up with some office work (I am soooo far behind), and I lacked the courage to reply to emails and compose updates on Pat's condition (it is very difficult to write anything when the news is grim). However, I did have reason to keep my hope alive: in my vast collection of pain-related papers, I possessed a handful describing the efficacy of ECT for treating both severe depression and pain. Finally, we got the approval we needed (thank you Dr. Mohr, Dr. Reid, and Dr. Warnell!). And, much to our relief, our insurance mercifully agreed to cover the procedure. Whew!
Incidentally, upon returning home from Mexico, I bought some groceries and, to my astonishment, got a phone call the next morning telling me I had won two $100 gasoline cards. Wow! At last, some good luck!
July 15-August 16, 2008 (ketamine coma) – see Coma Jul '08 tab
June 2008 – click on the Medical Synopsis button (at the top of the page) to view a description of Pat’s pain history and failed treatments
Pat's Transcranial Magnetic Stimulation
(October 2009)
Repetitive transcranial magnetic stimulation (rTMS) excites neurons in the brain via external, non-invasive, rapidly-changing magnetic fields. Although approved by the FDA for depression, many other conditions can be treated as well, including migraines, stroke, Parkinson's disorder, tinnitus, dystonia, and pain. Pat's treatment will be directed by Dr. Sheldon Jordan at Smart Brain and Health, in Santa Monica, California (http://smartbrainandhealth.com/). This is currently the only facility that combines PET scans with TENS stimulation to identify the pain processing areas in the brain and precisely direct the stimulation to within 1 mm of these regions. The machine makes an intense clicking sound, and though it won't penetrate her skin or skull, she will feel a rapid, rather uncomfortable hammering sensation to her head. Sitting in one place for an hour will also be difficult. We hope to see improvement within the first two weeks.
- William Hayes (Pat's husband)
Pat's Electroconvulsive Therapy (ECT) Blog
(July 2009)
Although the second ketamine coma dramatically reduced or eliminated Pat's CRPS/RSD, she still continues to suffer considerable pain. Clearly, she has substantial central sensitization (pain amplification), which could benefit from the reorganization of her brain that ECT can provide. The literature on ECT's benefit for chronic pain looks strong. It alters regional blood flow and changes neurotransmitter distribution and receptor abundance in the brain. Although Pat hates the treatment, which compared to others is actually quite benign, she is willing to give it one more try. In the past 2.5 years, she has obtained good but temporary relief from pain only twice: a few weeks last September (2008) and another 5-6 weeks last December-January (2008-2009). In both cases, the relief came with ECT following substantial ketamine therapy. Having recently experienced her second ketamine coma, we're turning to this one-two punch again, hoping for the best.
- William Hayes (Pat's husband)
Conclusions (28 August) – There is no question in my mind that Pat benefitted dramatically from this round of ECT treatments. The benefit became obvious after the 5th treatment, which is the time frame when psychiatrists begin to see results for depression. In the weeks following her 8th treatment, she continued on "maintenance," receiving a 9th treatment on July 22 (after 5 days), a 10th treatment on July 29 (after 7 days), and an 11th treatment on August 12 (after 2 weeks). As a scientist, I try to be objective in my interpretations, but I am also told often that I'm an eternal optimist...so take my conclusions as you will. By the 10th treatment, Pat's memory problems (relatively minor, in my opinion) seemed to diminish. I believe I saw some increase in pain preceding each of the maintenance treatments and unambiguous improvement for several days following. And in contrast to the 3-per-week treatment period, when she had obvious difficulty remembering recent events, her memory problems following maintenance treatments were not at all noticeable. Dr. Warnell wanted to continue maintenance therapy beyond this time, but she declined at the next 2-week interval since her pain reduction seemed to be holding and emotionally she just couldn't handle further treatments. However, she agreed that if the pain worsened, she would immediately return. At this point, there is no coincidence in my mind that the best three extended periods of pain relief Pat has experienced in the past 2.5 years have been after the three series of ECT treatments--all following huge doses of ketamine. There were times she did not see improvement following huge doses of ketamine (February 2009, March 2009), and there was no apparent improvement after 4 ECT treatments apart from ketamine (March 2009; a few more treatments would have given better clarity). Thus, for her, the combination of ketamine followed by ECT has been as good as it gets. Nothing else, including dozens of injections, dozens of medications, and even a pain pump implantation (later explanted), has brought any lasting pain relief.
Week 4 (July 18-25, treatment 9) – The single treatment this week was after a 5-day interval; hereafter, they will come at one-week or greater intervals as "maintenance therapy," though Pat is pleading to stop right now. She has difficulty believing there has been any benefit, though the changes are obvious to anyone who has been around her. This week was another very good one. Ironically, it began and ended at the same place. On Sunday, Pat said “see ya later” and took off to visit Idyllwild, a quaint high-elevation village on nearby Mt. San Jacinto, with her sister Regina and a visiting friend of Regina's. The ladies enjoyed lunch there and a nice walk about the town. Pat seemed to have a little increase in pain until Wednesday, when her single treatment clearly appeared to improve things. On Saturday, Pat and I decided to beat the heat (>100 F in our desert community), so I took her back up to Idyllwild. It actually rained and then sprinkled off and on, really dropping the temperature to a tolerable level (mid-70s). We enjoyed visiting the Idyllwild Nature Center and hiked for several hours on the trails, some quite steep. The hiking noticeably dropped her pain, so we actually ate out a restaurant that evening—our first time in several years other than a few fast food lunches! By the way, a very nice story on Pat's coma experience by Mark Muckenfuss was published just today in the Press-Enterprise (click here to read). At this point, I'm going to resume posting updates at the Current blog.
Enjoying our first dinner out in more than two years at The Bread Basket in Idyllwild.
Photograph: a kind waitress
Week 3 (July 12-18, treatments 6-8) – Although considerable pain remained this week, Pat rarely brought it up. She has been remarkably active, smiling a lot (sooo good to see!), complaining very little, finding things to keep busy with, and talking a lot about the future. We’ve returned to our regular evening walks, either in our neighborhood or the nearby canyon we love. More impressive, we went with her sisters to the San Diego Zoo on Saturday, where she walked long hours with remarkable stamina (the drive there and back were quite uncomfortable—sitting on her bum). She took much less levorphanol this week and refused it over the weekend. The ECT seems to be making a huge difference. There are some mild short-term memory issues that continue to distress her some, but they are a welcome trade-off for the positive changes so obvious to all. We’re now entering “maintenance” therapy—the next few weeks she will have just a single treatment.
Pat (left) poses with Dr. Harry Lion (“Hairy” might have been more apt) and two of her sisters, Gina Kavanagh (middle) and Maureen Souza (right), while touring the world famous San Diego Zoo.
Photo: William K. Hayes
Week 2 (July 5-11, treatments 3-5) – The past week started grim but ended on a positive note. After failing to get pain relief from extra alprazolam on Monday and Tuesday, I pleaded with Pat to resume using levorphanol. I reasoned that by reducing her pain signal the ECT would be more effective at reorganizing the pain pathways in her brain. Rather than escalate in doses, she managed to keep her pain below a "5" with consistent and then even decreasing doses up through the weekend. Of course, I took this as a good sign and began holding my breath. After her 5th treatment on Friday, I noticed the first hints of an effect on her memory. On Saturday evening, she sat for hours playing cards with me, her son Nico, and her mother Marilyn. At one point, though still in some pain, she declared that she no longer needed ECT, as she was doing quite well on a minimal dose of levorphanol. We were stunned. Today (Sunday, July 12), she was up to a lengthy walk in our nearby canyon during the cooler evening hours—our first outside walk of any duration in nearly 6 months. Unbelievable! As we departed the canyon, we stopped by the bridge where we discovered a massive colony of Mexican Free-tailed Bats 3 years ago. After drawing attention to the spectacle of their evening departures, dozens of people now drop in for the spectacle on a regular basis. While waiting for showtime, our dear friend Shawna Herrera was passing by and stopped to visit. She and Pat kindly posed for a quick picture. I estimated roughly 1500 bats emerging a short while later. In August 2006 (before Pat's illness hit hard), I estimated 5-10,000 emerging in an awesome cloud each evening, all within 10-15 minutes. I'm hopeful that numbers will be building again over the next month.
Pat and Shawna Herrera at the Fairview Avenue bridge in east Hemet, where a colony of bats resides in cracks under the bridge. You can see lines of guano (bat poop) on the concrete below.
Photo: William K. Hayes
Thousands of Mexican Free-tailed Bats emerge at dusk in a large cloud that trails off into the sunset.
Photo: Pat Barry (taken August 2006).
Week 1 (July 1-4, treatments 1-2) – We were disappointed that Pat could not begin ECT until Wednesday (July 1), so she got in only two treatments. She is not coping well. Although the ketamine coma dramatically reduced or eliminated her CRPS/RSD, she still suffers considerable pain at a continuous "7" to "9" range. Over the years, alprazolam (a benzodiazepine) has been by far the most effective medication for her pain, presumably due in large part to its muscle relaxing properties (she has muscle spasm that irritates her pudendal and sciatic nerves). In desperation, she took 2 mg of levorphanol (a narcotic prescribed to her more than a year ago), and got her pain well under a "5" for most of the day. On Tuesday, she took 3 mg and did not do as well. Unfortunately, she develops tolerance for opioids very quickly. After gritting her teeth the rest of the week, she returned to the levorphanol on Friday to make it through the 4th of July weekend, though with escalating doses. I'm impressed with the levorphanol. Compared to other narcotics, she experiences no nausea or skin flushing, but it still slows down her gut, necessitating laxatives. We spent Independence day with her mother and sister, and watched the local fireworks from her mother's front yard. As expected, we have not seen any change in memory or pain after two treatments. I keep pleading with her to give the ECT at least another week or two; she talks every day of giving up on life, and I can't say I blame her. All I can do is be supportive—though this includes a lot of pleading, I have to admit.
Pat’s Ketamine Coma Blog
(May 31- June 21, 2009)
I can hardly believe we’re doing this again, but here we go. Another coma, another set of blog entries. My wife has the unfortunate distinction of being the first double-coma patient in the Mexico ketamine coma study. If you’re gonna read this experience, you might read the Coma blog from July 2008 as well, as no two comas could possibly be the same (could anyone have ever uttered this phrase before?). The most recent entries will appear at the top of this page. The actual coma itself began on day 1.
Day 56 (July 25) – The time has come for a final update. Now that another month has passed since our return home to California, is there any evidence that Pat's second 5-day ketamine coma was successful? Although we came home wondering otherwise, I am convinced that there was, indeed, good improvement (incidentally, these introductory sentences are almost word-for-word what I wrote as the wrap-up to her first coma). Although I summarize below my take on things, a very nice story on Pat's coma experience by Mark Muckenfuss was published just today in the Press-Enterprise (click here to read).
For reasons not entirely clear to us, Pat's pain returned very quickly following the second coma. She had recently undergone sciatic and pudendal nerve decompression surgery (left side only), and we had hoped that the ketamine would help to calm down the inflammation and muscle spasm associated with years of nerve entrapment and the surgery itself. This component of her pain was quite obvious within several days of waking up from the coma. Her CRPS/RSD pain (burning shins and left wrist) was also apparent, though quite mild and not really a problem. However, within three weeks of the coma, she no longer had any hint of the CRPS/RSD pain, and it remains gone to this day. Hoorah! Although she still suffers considerable pain associated with the nerve entrapment and muscle spasm, she began electroconvulsive therapy (ECT) soon after our return to California. The CRPS/RSD pain was clearly gone before starting this treatment, but the nerve and muscle spasm pain improved dramatically after her fifth ECT treatment from a near-continuous "8" to a "5" or less for much of the time. Pat's condition was clearly much worse going into the first coma, so the difference was more dramatic, but we are certainly pleased with the turn-around following the second coma. Because of the ECT and its seemingly additive effect, Pat has not had any costly ketamine boosters this time around and we are hoping to avoid them altogether. We hope and pray that things will continue to improve.
Day 24 (June 23) - Yesterday, we visited with Pat's psychiatrist, Dr. Reid, who is recommending a new course of electroconvulsive therapy to hopefully reorganize the pain conducting pathways in Pat's brain. She loved the idea of Pat dyeing her hair (see day 19 post), as did Dr. Cantu, several family members, and a former coma patient. One family member was not so charitable. Can't win 'em all. The bigger question is whether Pat can follow through on any of the plans we wrote down; it was easier to agree to them when the low-dose ketamine numbed up her pain a bit. Fortunately, Pat's gastrointestinal system is functioning well and the orthostatic hypotension has vanished. She has kept busy at the house as best she can, unpacking, cleaning, fixing some food, trying to consume much-needed calories, and relaxing in the yard during the cooler parts of the day. It feels really good to be home again.
At this point, I'll post further updates to the Current Blog. In a few weeks I will probably add some conclusions here. We still need some time to assess what our excursion to Mexico accomplished.
Day 22 (June 21) - We somehow made it home yesterday, arriving at midnight. The trip was anything but easy. The padded bench in the chapel near our gate at the Houston Airport made the 3.5-hour wait for our connecting flight more bearable. Unfortunately, somewhere in transit I lost my cell phone, including the good-bye photo I had taken of Pat with Dr. Cantu. Bummer. My good friend and student, Carl Person, graciously met us at the airport. We were blessed to find fresh food in a clean fridge at home. Pat's awesome sister, Gina Kavanagh, had taken it upon herself to ease our transition back to the "real" world, delivering the food and doing some desperately needed yard work. Thank you, thank you, thank you!
Day 20 (June 19) - We're still in the hospital, with Pat continuing the low-dose ketamine drip to help numb things up. She continues to get up and walk a lot, doing her part to regain her strength. Her blood pressure seems to be under better control; yesterday, at one point, it dropped to 80/40 during the transition between lidocaine and ketamine. We've decided to fly home tomorrow, though this will be very difficult for someone who experiences excruciating pain while sitting. We can really use some extra prayer!
Day 19 (June 18) - I think we may have made a breakthrough in another area. Pat seems increasingly willing to consider a radical change to her thinking patterns and behavior that until now have been all too typical of chronic pain victims. I have gently (sometimes vigorously) prodded her on this for a long time. Her frequent talk of "giving up" all week long (very difficult for me to hear) has now been replaced with "I'm going to beat this," and we have written a substantial list of the things that need to change. Nothing will be easy. She needs to give up a lot of her stress, worry, anxiety, and catastrophizing and replace these with more care-free day-to-day acceptance, positive talk even when she doesn't feel it inside, and a willingness to engage more in her former life--particularly her social life. She has agreed to change her hair color to be a visual reminder each day that she is giving up her current approach and focusing on a new one. She'll be blonde soon--the same color as when I met, fell in love, and married her. This change is not because I have a blonde thing, but because I really think the daily reminder would do her well. I hope her family embraces this idea.
Day 18 (June 17) - We returned to the hospital today to see if something might help to calm down the pain. Dr. Cantu put her on an intravenous lidocaine infusion. A good proportion of chronic pain patients respond well to this treatment, getting good pain relief, but Pat is officially a "non-responder." Her pain responds to very little of anything <sigh>. The June 11 MRI report mentioning Pat's enlarged and hyperintense left piriformis muscle keeps nagging at me. I often wonder to what extent this has caused her pain to persist, as it may still be compressing her sciatic and pudendal nerves. I believe that I have found the image showing this assymetry (below). I'm going to email her surgeon about the meaning of this. I had hoped that, following her surgery in April, this muscle would have calmed down by now.
MRI image of Pat's left piriformis muscle, which appears to be enlarged and inflamed. Spasm of this muscle will irritate the sciatic and pudendal nerves.
Photo: MRI scanner at Hospital San Jose Tec
Day 17 (June 16) - We're still camped out at the motel, waiting and hoping that the pain will calm down. Pat doesn't think she can make the brutal trip home with her bum hurting so much. She's trying to regain strength by pacing in the room, but her efforts are hampered by fairly severe orthostatic hypotension (low blood pressure upon standing up). We're playing a lot of cards and watching occasional television programs. We are missing California.
Day 14 (June 13) - Today we left the hospital and returned to the motel. We want Pat's pain to settle down a bit more before flying home. Our taxi trip between the hotel and hospital is pretty quick, unless the traffic is heavy--in which case the drivers show off their expertise at cutting in front of others. Very few of the drivers speak English, but we often attempt some level of communication. The roads lack shoulders and the signage seems inadequate to me, but the pavement is generally much better than that of roads in southern California (ours are pathetic). There's an awful lot of roads and concrete in this part of Monterrey; you get the feeling that concrete finishers are in demand here. However, the sprawl is broken up in places by parks, walkways, and athletic fields, primarily along the mostly-dry riverbed that runs through the valley and between the hotel and hospital. What really impresses me is how clean the roadways and other public areas are; it's amazing, really. I wouldn't say this city is attractive or well designed, as homes and businesses are generally built close to the curb with little to no landscaping, but the area we frequent is as clean as any city I've ever visited. I really admire that. So far as I can tell, there is absolutely no recycling in this city. I'm surprised and disappointed that no one has figured out how to tap into this potentially lucrative business. Forgive my rambling; just thought I'd create more of a picture of this city whose inhabitants and culture I've learned to appreciate and respect.
Day 13 (June 12) - Pat finally slept through most of the night, and cat-napped a few times during the day. She needs to catch up more on her sleep. Despite the frequent language difficulties with her health care providers, we greatly appreciate the personalized treatment at this hospital (Hospital San Jose Tec). She certainly gets more attention from the physicians and nurses than she would ever get in the U.S. One amazing thing is that she gets a shower every day. I wouldn't say this city is inexpensive to live in. Food, for example, seems comparable to that in the U.S., and from what I've been told decent housing is not particularly affordable. The medical care, in contrast, is incredibly inexpensive. The basic charge for a hospital room, which is more expensive than in most other local hospitals, is only about $250 per day (though medications, food, and other services add up). Most medications and tests are exceptionally low in cost compared to the U.S., and you can generally walk into a pharmacy and purchase meds without a prescription. I feel sorry for the nurses, though, many of whom have 5 years of education to earn their degrees, yet get paid only about $4-5 per hour (maybe one-tenth of their U.S. counterparts). They have to pay a hefty income tax, too. In this particular hospital, they get to do real nursing--focusing more on the patient and less on paperwork. I know that my wife, a former Emergency Department nurse, would much prefer working in this environment than the one she was forced to leave after her health went into free-fall. I think our litigious society has all but destroyed health care in the U.S., which is a large part of the reason why we are here instead.
Day 12 (June 11) - Pat is having considerable difficulty sleeping, probably as a consequence of the ketamine coma, though pain undoubtedly plays a role as well. I'm mortified that gentle prodding was all it took to make her pain substantially worse yesterday, but it does seem better this evening. At noon, a tech whisked her off to an MRI scanner. Afterward, the news became very interesting yet again. From the verbal description of the report we haven't read yet, the images, including those with gadolinium contrast, indicate that Pat does NOT have a hipbone tumor after all. The left sacroilial (SI) joint is just bizarrely abnormal. The periosteum (bone covering) and trabeculae (internal structure) even look healthy. Other than the enlarged and slightly inflamed left piriformis muscle that we learned in April was a problem affecting her sciatic and pudendal nerves, nothing else particularly significant showed up. Looking through old records on my laptop, I confirmed my recollection that Pat had her left SI joint injected several times in 2002 without benefit. There may well be some arthritis generating some pain in this joint, but there does not appear to be an acute condition. We'll take this as good news. So far as we can tell, the identifiable pain generators have been the compressed nerves and associated muscle spasm, which we hope were addressed surgically in April (see Current Blog), and extreme hypersensitization of her tailbone area where there must be an idiopathic (unidentifiable) pain source--which is actually true for most cases of tailbone pain.
The good news was dampened a bit when I got an email from fraud prevention at Bank of America. Someone has gotten my ATM card info and was on quite a global spending binge today. Another pain in the butt to deal with! After a lengthy phone conservation, I was told they had blocked my card after the second charge and that the money (a lot of it) should all be put back in my account. Why me, and why now? Geez.
Day 11 (June 10) - Things seemed better this morning for Pat. She played cards with me and Krista while waiting for her computed tomography (CT) scan at noon. Still trying to sort out what might be generating the tailbone area pain, Dr. Cantu wanted the better resolution of bone that a CT scan provides (she has had several previous pelvic x-rays and MRI scans). As Pat was wheeled away, Krista and I headed to the taxi with heavy hearts; Krista desperately wanted to stay longer to continue helping her step-mom and hang out with her dad, but she had a job to get back to. When Dr. Cantu came by in the afternoon, he and I gingerly explored Pat's primary tailbone pain area to feel for any asymmetry and swelling (there is slight swelling on her left side). To our dismay, the gentle pressing with fingers really set off her pain and made her afternoon unbearable until a lot of medication calmed it down enough to focus somewhat on a TV movie. When Dr. Cantu returned later in the evening, he brought unexpected news. He asked me to check out the CT images on the computer at the nurse's station. They were certainly quite impressive, so I captured a screen image on my cell phone camera. Pat appears to have some kind of tumor on her left iliac (hip) bone that has grown into and eroded a portion of her sacrum (the fused pelvic vertebrae). Given the amount of bone remodeling, the tumor growth has clearly gone on for years and is probably benign (non-cancerous). The clinical significance of the tumor remains unclear, but the presumed erosion of sacral periosteum (bone covering) could certainly be generating pain. Then again, this may be irrelevant to her condition. Although Pat has endured several MRI scans the past few years, we're taking the advice to do so again--tomorrow if they can fit it in--since we now have a specific region to take a closer look at. Why are we just now learning about this? I don't know what more to say.
A possible source of pain: apparent tumor on Pat's left iliac (hip) bone that has grown into and eroded a portion of her sacrum (the fused pelvic vertebrae).
Photo: Very big and expensive computed tomography scanner.
Day 10 (June 9) - After a long, sleepless night, things were definitely better today than yesterday, though still a struggle at times for Pat. Physically, she has recovered so much more quickly compared to her coma last summer. She's walking quite well now, building endurance, and eating plenty of solid food without any gastrointestinal problems. However, the pain also returned more quickly this time around. During the last coma, Pat underwent withdrawal from several medications (like most of these patients do), which I think added to the total shock to her system that erased her memory of events up to a month or so prior to the coma. This time around, being more tolerant of the ketamine and not experiencing any withdrawal, the shock to her system was substantially less and her memory is almost entirely intact. Another recent coma patient, also with severe pelvic pain, recalled everything leading up to her extended sleep and also had a rapid return of her pain. From the many papers I've read, I know that memory, pain, and emotions are all processed in some common areas of the brain. This is why electroconvulsive therapy, which disrupts memory, is thought to be of benefit to some pain patients. Case reports even document how several chronic pain patients who suffered amnesia no longer complained of their pain. I've often wished that we could selectively wipe out the past two-and-a-half years of Pat's memory. Pain and memory...something to ponder.
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I'm reminded of a paper I read several months ago describing the physical changes that take place in the brain of a chronic pain patient. By comparing CRPS/RSD and normal patients, the authors documented gray matter atrophy (loss of information-processing cells) and changes in white matter connectivity (signal conduction) in the emotional, autonomic, and pain perception regions of the brain. These changes were associated with pain intensity, pain duration, and anxiety (Geha, P. Y. et al., 2008; Neuron 60:570-581). In Pat's case, we've certainly been dealing with intensity, duration, and anxiety. Perhaps the coma helps to gradually restore some of these brain changes; I'm sure they can't possibly happen overnight. We're still hoping and praying for gradual improvement and that tomorrow will continue this trend.
Krista (on the right) has been a terrific help and companion. We don't want to see her leave!
Photo: Nurse Laura
Day 9 (June 8) - Things looked very promising after Pat managed to sleep most of the night. Her abdominal pain seems to be gone, and she has resumed eating. However, as the day progressed, her excitement about the smooth, pain-free morning rapidly deteriorated as her pain began to return in all the same places. Eventually, Dr. Cantu gave her fentanyl to help her cope better. We have no idea what keeps bringing the pain back. We do know that in some patients, including Pat, there is a sort of pain rebound after a round of large ketamine doses followed by surprising improvement days or weeks down the road. We won't learn just where things stand for a while yet, but today was tough for us all. Pat's sister, Maryelise, left early in the morning and we really, really miss her. Thank you for the great company and help!
Pat and Krista playing Old Maid, a great diversion for Pat.
Photo: William K. Hayes
Day 8 (June 7) - Today was awesome. When I showed up to sign consent forms for the colonoscopy, I learned that Pat had awakened several hours after I departed last evening and was feeling much better. Krista was the hero of the night, reading most of a book out loud, which was no small chore because Pat wanted to talk non-stop. The colonoscopy showed nothing of significance; the conclusion: some irritable bowell syndrome and a medication specific for it. Pat was confused occasionally about the girl reading a book out loud, at times not realizing it was her step-daughter. This led to a few amusing remarks, such as "you know, I have a 20-year-old step-daughter named Krista, too!" Otherwise, there have been no funny tales to share. Pat is doing amazing this time around. Compared to last summer's coma, there have been no apparent hallucinations; she has coughed up very little fluid and mucous from her lungs; she has experienced no strange "buzzing" of her body; and her sore throat has been very tolerable. She recalls everything but the day she entered the coma, and when she asked directly, she learned that she was waking up from the ketamine coma rather than an infection--and she took it in stride. She says she feels some tailbone pain--we hope this is more from lying and sitting in bed for so long more than anything else and will calm down. We enjoyed a fun evening watching TV together while Krista caught up on her sleep. When we figure out how to download images from Krista's camera (I don't have mine here), we'll post a few.
Pat's post-coma angels: sister Maryelise (left) and step-daughter Krista (right), in a photo that Pat took herself from her ICU bed.
Photo: Pat Barry
Day 7 (June 6) - Pat awakened much quicker than expected when they ended her propofol anesthesia drip this morning. While I was at breakfast, MaryElise got a call that Pat was awake, breathing on her own with the tubes out of her throat, and asking for me. Of course, I hustled over to the hospital. She looked great! One of her first remarks was, "Don't ever ask to go poo-poo; you get a full bath!" She didn't like getting the bath because her abdomen was in considerable pain and the movement made it worse. To my surprise, she was quite lucid, though she believed she was speaking fluent Spanish and rehearsed in delight for an hour or more her knowledge of numbers. For a while at least (perhaps yet), she understood only that she developed an infection (true), was unconscious several days (true), and had just awakened (true); I told her no lies. I'm not sure when it dawned on her, if it has yet, that she is in Mexico, or that she was here because she suffered brutal pelvic pain. Remarkably, there were no hallucinations and only mild confusion. Because the abdominal pain was so bad--more so than for the typical patient (all apparently experience some of this discomfort)--Dr. Cantu gave her i.v. fentanyl, but it didn't help much. After drifting to sleep from 5:30-7:00 pm, she awoke in considerable pain and agitation, so Dr. Cantu replaced the fentanyl with enough propofol to put her back to sleep and out of pain, hopefully for the night. Krista and MaryElise arrived about the same time. We had a nice supper together in the cafeteria before I returned to the motel for the night and they continued the bedside vigil.
By giving coma patients an extra day of propofol, I think that Dr. Cantu has found a viable solution to the difficulties associated with the earliest and most difficult part of ketamine emergence. Pat's awakening was an absolute breeze compared to last year--for her and for those of us trying to guide her along. I'm just hoping the expected abdominal pain settles down soon. Because of its severity and continuation from before the coma, Dr. Cantu has scheduled a colonoscopy tomorrow morning. The fever from yesterday, by the way, has broken. She'll remain on antibiotics a few more days and hopefully not succomb to thrush (I'd bet money we'll see it though).
She's awake! Our only picture of Pat in the ICU this summer (but there are plenty of images posted from last summer's coma).
Photo: Krista Hayes
Day 6 (June 5) - Since Pat was sleeping an extra day and is doing so well, Krista and I were urged to take a few hours for ourselves and do some sightseeing. Omar, our taxi driver friend, met us at our motel lobby and drove us first to Cola de Caballo. Krista and I walked the short distance along a stream to a beautiful waterfall, and then hiked a bit further up the steep trail beyond it. Afterward, we drove up the nearby Sierra Madre Mountains to Chipinque, a beautiful ecological preserve with fantastic views of the valley. I particularly enjoyed seeing the birds. Though I did not have my trusty binoculars, my crude imitations of several songs brought in a few species considered rarities in the U.S. that I had seen only once or twice before in either Texas or Arizona. These included Clay-colored Robin, Rose-throated Becard, Tropical Parula, and Rufous-capped Warbler--great names, don't you think?! There were also several unfamiliar songs produced by singers I could not get good looks at. I greatly appreciated the frequent signs I saw as we wound our way up the gorgeous Chipinque road: "Conserva flora y fauna." I'm all for that! What a wonderful morning...even though we did not encounter a snake <sigh>. Someday I'd love to stay at the Chipinque Hotel with my darling wife and hike the trails that go into the forest. Hiking is definitely her favorite outdoor activity and antidepressant. Upon returning to Pat in the afternoon, I learned that she had just developed a bit of fever. I left the room temporarily as they took cultures and started her on antibiotics. Although many patients experience this, it makes me a little anxious. Dr. Cantu suspects bronchitis. Hang in there, Love!
Pat's sister, MaryElise, arrived late in the evening. She was a great help during Pat's first coma last summer and I was excited to see her again.
The view of Monterrey, a sprawling metropolis of nearly 5 million people, from Chipinque, a natural park of the Sierra Madre mountain range.
Photo: Krista Hayes (via cell phone)
Cascada Cola de Caballo (Horsetail Falls), a gorgeous 25-meter waterfull that Krista and I thoroughly enjoyed.
Photo: William K. Hayes
Day 5 (June 4) - "I've been waiting for a girl like you to come into my life." These are the beautiful words (by Foreigner) of one of the many love songs I've been playing softly from my laptop while sitting at Pat's bedside this week. What could apply more aptly to my wait for her to wake up? This morning, before I arrived, the ICU people moved her into another room, needing to place an open-heart surgery patient in the biggest room available, which she had occupied. Given all the tubes and machines she is hooked up to, this apparently was no small task. The new room is quieter, being further away from the center of hustle and bustle, so I don't mind. And I'm really proud of how cooperative Pat was! Fortunately, her daily blood values, lung x-rays, and other indicators show that she is doing exceptionally well. Many if not most patients by now have developed a fever associated with mild lung perfusion and/or infection. Perhaps Pat is drawing subconscious strength from the love songs and my occasional words of encouragement. I'm still waiting, baby; hang in there!
Dr. Cantu has decided to let Pat sleep on propofol an additional day after turning off the ketamine tomorrow morning. This would allow much of the ketamine to leave her system while avoiding the worst 24 hours of confusion and hallucinations that are inevitable upon waking up. When she does wake up, I assume she'll demand to know what her medical condition is, as she did last summer. Retrograde (back-in-time) amnesia is almost always a major side effect of this coma. Pat has recalled very little of events during the month preceding last summer's coma. She and I have discussed this amnesia issue, and while I never condone lying, we both agreed that I should do so this time around to better guard her brain from reestablishing pain memory connections. I'm still mulling over what to say. The longer it takes before she remembers her primary pain areas, and the less she focuses on them, the better.
My daugher Krista arrived this evening. It was exciting to see her again! I lingered longer than expected yesterday at Pat's bedside...so after dinner in our room (pizza and club sandwiches), we're now doing the stupid laundry. So much for Krista's unique Mexico experience! Pat's sister, MaryElise, will arive tomorrow evening. She is a real angel to help out with such short notice. Last summer, she did an awesome job at keeping Pat distracted. And of course, Pat's other siblings who rallied to her support last summer were saints as well.
For some reason, Dr. Kirkpatrick is having trouble today with his foundation's website. Consequently, the Medical Synopsis link is not working. Hopefully things will be back online shortly.
Essential medications for maintaining a patient in the coma: ketamine, midazolam, and propofol.
Photo: William K. Hayes
Day 4 (June 3) - Pat continues to do well in her coma. I'm at her bedside as I write, where I hang out for much of the day. I generally head back to the motel between 9 and 11 pm; I'll depart for there on the early side tonight to do some laundry. It's a relief that I have a wireless signal from her room in the ICU. Today, I've been playing love songs from my laptop so that she can hear them (if there is any light on upstairs). My Windows Media Player refused to produce sound for several days—I have no idea why—but Bill Wade of tech support at my university kindly used internet-based software to literally view and take over my laptop to check some issues and ultimately reinstall the program. Amazing what technology can do for us today. I'm really missing Pat's voice, hugs, and kisses. However, my youngest daughter, Krista, will be arriving tomorrow evening, so I'm looking forward to the companionship. In the meantime, I've been hanging out a bit with John Roach's lovely family. I'm also impressed how warm total strangers can be. While waiting for my taxi at the hotel this morning, I chatted with a sweet couple from Jamaica who were here for some kind of medical treatment, primarily because of affordability (medical tourism is a viable industry in this city). And then there's nothing like visiting a restroom at the hospital when a guy at the adjacent porcelain asks in broken English, "do you have a family member here today?" (I could only wish it was just for the day). We both parted ways agreeing to pray for each other! As an aside, this is the same bathroom where one needs to be a bit wary because an older female custodian occasionally enters to do some cleaning and goes about her work regardless of your presence. I'm really pleased that my 20-year-old daughter will get more of a taste of life in another country. The human experience is remarkably similar no matter where one goes. I just wish that pain and laundry and software glitches did not have to be a part of it.
I loved getting reaquainted with Pat's health care providers from last summer, including my perpetually jovial amigo, Isaias.
Photo: William K. Hayes
Day 3 (June 2) - Pat's sleep continues to progress well. No fever yet, no infection, good kidney function, very agreeable to everything I ask of her. She's getting a lot of medications to keep her from moving too much. The nutritionists are taking advantage of a new instrument they did not have last summer: a calorimeter that measures her oxygen consumption and carbon dioxide production during a 30-minute period to determine her basal metabolic rate (and a few other cool things I had to dust off some brain cells to make sense of). From this, they gauge how many calories to feed her by orogastric tube. They upped her caloric intake to 1300 calories per day, as she is tolerating the liquid food well and has yet to voice any complaint. I visited with the other two coma patients and their families today; really good people. We're part of a very small fraternity—I'm quite certain that fewer than 100 people in the world have undergone this procedure (and the club is very miniscule for those having done this twice). I'm really tired tonight; just can't seem to get done with things before midnight. I sent out 44 emails today, most related to work, and still left a number of tasks for tomorrow (I'm perpetually behind; sorry if I did not get to your message or phone call). I can't imagine what life would be like without a laptop, though I'm fairly certain my eyes would be less red. By the way, I've posted a photo of Pat and Lindsay Spengler at the Current blog.
Day 2 (June 1) - I got some decent sleep last night, and did not arrive at the ICU 'til late morning. I then had to spend a few hours on Skype (internet phone) in the visitor's lounge, trying futilely to participate in a department staff meeting (my work back home). I could hardly hear anything said around the table by my colleagues. C'est la vie. In the afternoon, a kind surgeon, Dr. Balli, removed a small nodule from the base of Pat's neck that we discovered the day before flying to Mexico (four weeks ago). It had become yet another hotspot for pain, despite its very small size (maybe the size of a grain of rice). Although the nodule was superficial, the surgeon was a tad bit surprised that it was embedded in her underlying muscle. These nodules are almost always benign, and we hope this is the last we'll have to deal with it other than to remove a stitch or two. May it heal soon.
A reassuring and compassionate presence, Dr. Felipe de Jesús M. Pérez Rada, the Jefe of Medicina Crítica.
Photo: William K. Hayes
Day 1 (May 31) – Pat had much difficulty sleeping last night. She awoke often and occasionally asked me to wrap an arm around her. She was understandably fearful of the immediate future, and could not help but wonder if she was doing the right thing. We arrived at the hospital at 9:30 am to get checked in, and then proceeded to the Intensive Care Unit—her home for the next 5+ days. To my relief, she was remarkably upbeat, positive, and chatty with the doctors about making the coma work. While she was put under ketamine and had the “busy work” done (inserting and connecting a number of tubes for breathing, feeding, monitoring vital signs, etc.), I visited with a couple of other coma patient families in the waiting area. John Roach awoke yesterday from his coma and is moving to a private room today. His wife, son, and sisters-in-law were very sweet. Sarah Brade has recovered to the point where she is moving back to a local hotel today. She is fortunate to have Neville taking care of her; he is flat-out exhausted, and I can certainly identify with what he has gone through. Like Pat, these patients and their loved ones have suffered tremendously (their medical synopses are at the same link as Pat’s). I’m praying especially for Sarah and Neville, and may stop by to visit them in their motel later this week. I spent all afternoon at Pat’s side, but left early in the evening, deciding I really needed to catch up on my sleep. The nurses are quite attentive and taking good care of my pretty wife as she sleeps peacefully.
Pat's Electroconvulsive Therapy (ECT) Blog
(December 2008 – January 2009)
Pat chose to return to electroconvulsive therapy (ECT) for a second round of treatments. This time, we hope that circumstances will provide for more effective pain relief, as several things may be in her favor: her hypermobile coccyx (tailbone), which we believe was a major pain generator, has been removed; the dreaded and painful skin flushing sems to have vanished; she just had some recent ketamine therapy to knock back her pain; and she now has a PICC line in place to avoid the repeated i.v. pokes that caused so much pain and distress with the last round of ECT treatments. She wants to keep on fighting.
- William Hayes (Pat’s husband)
Conclusions (January 31) – Personally, I believe the ketamine boosters in early December did a heckuva good job reducing the pain, though it wasn't apparent for several days. I also believe that the ECT immediately following the ketamine (a one-two punch) further reduced at least the RSD component of her pain and probably helped her to cope better by relieving some of her depression. When we returned from Mexico, she still had some shin pain, but it gradually vanished during the course of ECT. Could this have happened without the ECT? I can't say for sure, but she has had reductions in pain earlier following ketamine therapy—including 9 ketamine treatments in Dec 2007 and the coma experience in July 2008—that did not “hold.” This is the first time that her shins have been pain free in two years. What ECT does is to reorganize the brain, changing neurotransmitter and blood flow distribution in ways that can disrupt the established pathways maintaining chronic pain. We gave it our best effort!
Week 4 (January 4-11, treatments 7-9) – The good times continued, though it has been a huge effort to get Pat into her Mon-Wed-Fri treatments. The PICC line has been a godsend, but she most detests having the anesthesia mask put over her face; she can't handle the loss of control she feels. I don't understand this, but perhaps it relates to the busy, self-sufficient nursing career and single motherhood that she experienced much of her adult life. Frankly, the treatment is very gentle compared to others she has undergone the past two years, but she is not very rational about this. I did not want to ask about her shin pain, which she was not complaining about, but she mentioned the complete absence of it to my daughters. Hallelujah! We also got by another hurdle on Thursday when she had more dental work, including drilling, without any problematic pain resulting. This was a different tooth problem than the one that set off her pain in September and still bothers her a wee bit from time to time.
On Friday, I knew it was useless to argue with her about continuing ECT, as she was insistent her 9th treatment would be her last. Afterward, we had the PICC line removed, as she detested having it as well. Things are going well enough at the moment that I have some hope things will continue to improve. However, I'm concerned that she absolutely does NOT want either ketamine boosters or ECT “maintenance” (occasional treatments to help “hold” the brain at its new, improved state). We'll see how things go.
Week 3 (December 28-January 3, treatments 4-6) – It's been a huge relief to see Pat continue to function so well. Each day we go in for the ECT treatment, however, is particularly difficult. She hates it, pleads not to go, and definitely suffers more pain during the hours preceding and immediately following it. I wonder whether some of it is related to anxiety. The evenings afterward are generally more tolerable and the following day is good. We've gone on several hikes at local parks, and she is tolerating the walks very well. My two daughters from Idaho arrived New Year's eve; it was soooo good to see them! And they really treat their step-mom with love and concern, something I really appreciate.
Week 2 (December 21-27, treatments 2 and 3) – This was an amazing week. Pat continued her treatments on Monday and Wednesday. We traveled to Loma Linda on those days rather than stay there overnight so that we could spend more time at home...in part because someone (me) needed to do some much-needed work on our neglected yard. We can't tell for sure whether Pat's pain is responding yet to just 3 ECT treatments (doesn't seem likely), but the difference before versus after our recent trip to Mexico for ketamine boosters (December 5-14) has been like night and day. Instead of complaining about her pain perhaps 10 times an hour, she is going all day without any mention of it. I occasionally ask, of course, and am told the pain is pretty much staying near or below a “5.” We celebrated Christmas eve (Wednesday) and Christmas day (Thursday) with Pat's family at her mother's home. The BIG surprise came on Christmas day, when Pat's daughter, Shannon, and her boyfriend, Gabe, announced their engagement! More family arrived to stay at our home on Friday...and I'm glad of it. The more the distraction for Pat, the better. She has been pretty much her old self once again: conversing with others, playing cards, cleaning the house, sleeping all night without any medication...she even sat on her bum to drive me the 10 minutes to her mother's house this afternoon (Saturday)! Of course, I'm absolutely elated...and I'm praying that things continue this well.
Christmas at the Barry home: Pat's daughter, Shannon, and her boyfriend, Gabe, announced their engagement!
Photo: William K. Hayes
Week 1 (December 19-20, treatment 1) – Yesterday (Friday) was Pat's first treatment and things went surprisingly well. I was expecting some neck muscle stiffness, which happened after her first few treatments in September, but it didn't happen. I also expected her to fall asleep shortly after returning to my Grandmother's apartment, as she always did before, but she wasn't drowsy at all. Maybe the difference is that they are now using sodium brevital rather than etomidate as the anesthetic. We drove to Hemet in the afternoon for our first visit home in some weeks. Was wonderful to see Nico (Pat's son), the dogs, and home sweet home. Today (Saturday), we spent the afternoon and evening at the home of Pat's mother (Marilyn Barry) and sister (Regina Kavanagh), where we waited...and waited...and waited...until our special guests arrived. At last, Nico showed up with his high school jazz band teacher (Dan Bolton) and about 5 classmates to perform something like 30 minutes of Christmas music. It was LOUD in the confines of such a small home, but BEAUTIFUL! The next door neighbors came over and several family members listened via cell phone!
Pat and her mother, Marilyn, enjoyed outstanding Christmas music performed by Nico and other members of his high school jazz band.
Photos: William K. Hayes
Pat's Electroconvulsive Therapy (ECT) Blog
(September 1–20, 2008)
Pat chose to undertake electroconvulsive therapy (ECT) after her ketamine coma failed to provide the level of pain relief we had hoped for. Although a number of ketamine coma patients have blogged their experiences, I’m not aware of anyone blogging their ECT experience. Having seen a number of pain physicians, none mentioned ECT as an option for pain control. I just happened to stumble on some papers indicating its efficacy for chronic pain conditions…and we were desperate enough to give it a go.
- William Hayes (Pat’s husband)
Conclusions (October 15) – Looking back on things, I am convinced that we saw a real decrease in both her pain and depression as a result of the six completed ECT treatments. Other than the pain inflicted in her arms by the frequent i.v. pokes and some stiffness in her neck after the first few treatments, she tolerated the procedure surprisingly well. The theory, supported by evidence, is that the shocks which induce brain seizures result in changes in blood flow to various structures of the brain, including the thalamus, which processes a lot of pain information. There are also documented changes to the populations of neuroreceptors. I wish we could have continued the treatments to see where they would have led to, as 12 treatments are recommended, and these can be followed by occasional “maintenance” treatments. The memory problems are definitely gone by now and were quite trivial. Of course, Pat would gladly give up her memories of the past two years in exchange for substantial pain relief, if that’s what it took!
Week 3 (September 14-20, treatment 6) – Pat agreed to a single treatment on Monday—her sixth and last. Her arms remained too bruised and painful to continue. We developed some concern that the i.v. pokes had triggered RSD/CRPS pain in her arms, but hoped otherwise. The ECT folks called every few days, encouraging her to complete the treatment, even conceding that they could use ketamine rather than etomidate as the anesthetic (the latter caused an intense burning sensation in her arms), but Pat wouldn’t budge and there was no point to risking further pain. Fortunately, the week was a good one. Friday night was splendid—Pat’s son, Nico, co-directed the band at the Hemet High School football game, and her daughter, Shannon, drove from Oceanside to enjoy the show. I loved seeing the three of them together. Saturday, at her mother’s home, Pat chatted up a storm with her cousin, Bill Tierney, in town for a visit.
Pat enjoyed the Hemet High School football game with her son, Nico (assistant drum major of the band),
and her daughter, Shannon.
Photo: William K. Hayes
Week 2 (September 7-13, treatments 4-5) – Pat resumed treatment on Monday and Wednesday, but refused to go in on Friday, when her arms were simply too bruised and painful from the i.v. pokes. We have pleaded to have her sent home with a saline lock on her i.v., but they have refused to do so thus far. Monday was particularly rough, as Pat had cried most of the prior weekend and simply wanted to end it all on this day. Realizing that she had probably reduced her antidepressant too quickly (under her Doctor’s approval), I insisted that evening that she take a higher dose. Things evened out after that. On Wednesday, she was especially sweet to everyone and even asked for bilateral electrode placement, which can be more effective than unilateral placement but also causes more memory problems. She absolutely wants to get better! On Thursday, she allowed me to leave early in the morning to help my student, Aaron Corbit (who manages this website), track and photograph 5 of the 9 rattlesnakes in Loma Linda that have tiny radiotransmitters implanted in their body (details at www.williamkhayes.com). By Friday, Pat was unmistakably faring much better; her tailbone pain was down to a “5” (on a scale of 0 to 10), she actually sat in the front seat of our van as we drove home to Hemet (45 minutes!), and she had a great time with her son, Nico, that evening. I suspect that much of the improvement was from the ketamine coma and subsidence of her gastroenteritis, but the ECT may be contributing as well. It generally takes at least 5 or 6 treatments before depression improves with ECT, and the same is presumably true for pain as well. Up to this point, I had been careful not to discuss with Pat the extent of her pain prior to the 5-day coma treatment. I didn’t want her to dwell on this. However, on I gently prodded all of her prior pain areas (tailbone, hips, lower back, buttocks, crotch, shins), and she was pleasantly surprised to learn that the pelvic pain was essentially confined to her tailbone. Progress! The shin pain was decidedly tolerable. Her mother visited us on Saturday and was absolutely astonished—she thought Pat looked and acted better than she had seen in more than a year. Pat even drove her vehicle (10 minutes) to pick up her son at a friend’s house (he drove back home); in doing so, she felt, at long last, like maybe she can resume some normalcy to her life. Her gorgeous smile has also returned…and I am more excited than words can describe.
There will be more “bad” days ahead, but she now knows that there are an increasing number of “good” days, and she is growing confident that there will be more. She still has some obstacles to overcome. On Monday, she visits the neurosurgeon that is willing to remove her intrathecal pump, which no longer contains medicine (the opioids and other medications gave her no benefit and actually caused some frightening reactions). He may also remove her tailbone (a big decision for Pat to make; the issues surrounding coccygectomy are complex). I’m also hopeful she will continue the ECT, as pain patients from the published studies all had 12 treatments. I am seeing some short-term memory loss, as expected (she asks almost daily, “do we have an appointment to see Dr. Reid again?”), but she is not the least distressed by this (much to my surprise). Short-term memory loss can persist for some weeks, but permanent problems with memory are considered very rare with today’s treatment protocols. Incidentally, she recalls very little of the month leading up to her ketamine coma. Frankly, I feel the ECT is a much safer and more tolerable treatment than the ketamine coma, though its efficacy for pain is less well documented. My fingers are crossed that we continue to see improvement in her pain.
Week 1 (September 1-6, treatments 1-3) - Pat’s first treatment was on Tuesday following Labor Day. She also had treatments on Wednesday and Friday. They cannot safely give more than 3 treatments per week. After having something close to 100 i.v. sticks in the past year, the pokes of her veins were the most traumatic part of the treatment. Then, to add insult to injury, she would feel a brief stinging sensation as the anesthesia entered her veins. The ECT procedures are much refined compared to days of old, and are otherwise relatively benign (many patients find a visit to the dentist to be more stressful). The anesthesia (etomidate and/or propofol) is necessary so that the patient is rendered unconscious during the treatment. Once asleep, the patient is given succinylcholine to temporarily paralyze the muscles. Electrical leads are then placed on the head to conduct a current sufficient to induce a seizure. The procedure requires as little as 10 minutes. With each treatment, Pat seemed to awaken quickly (I was called back to the room within 30-40 minutes) and had no problems whatsoever recalling everything before and after the treatment. Although Pat was not always pleasant, especially the first two days, the nurses, anesthesiologists, and Dr. Warnell, who conducts the therapy, were very professional and courteous. After spending the week at my sweet 92-yr-old Grandmother’s apartment in Loma Linda, it was nice to return to our home in Hemet for the weekend. Our dogs (Max and Honey) and Pat’s son, Nico, certainly appreciated our presence.
Pat’s Ketamine Coma Blog
(July 15 - August 16, 2008)
I’ve had so many people asking to receive updates on Pat's ketamine coma that I've decided to write and share a daily journal. With the amount of pain that Pat is in, she can’t concentrate well enough to do much writing of her own, so I’ll try my best to describe her experience. I'll do my best to provide some background while also keeping each day's account reasonably brief. By all means, do NOT feel obligated to read this stuff! From personal experience, we found that browsing the blogs and journals of prior coma patients was very helpful in putting together a picture of what Pat would be going through. Perhaps the details here will benefit others that follow down the same path. The most recent entries will appear at the top of this page. The actual coma itself was from day 6 to day 11.
-William Hayes (Pat's husband)
Day 61 (Saturday, September 13) - The time has come for an update. Now that a month has passed since returning home to California, is there any evidence that Pat's 5-day ketamine coma was successful? Although we came home convinced otherwise, I now believe there was, indeed, dramatic improvement.
Unfortunately, the coma procedure triggered fairly severe gastroenteritis—perhaps because the antibiotics changed her intestinal flora—and this muddied the picture for some time. Before leaving Mexico, I had come to suspect that the bowel problems were in such close proximity to her primary pain area—her tailbone—that they had triggered the return of much of her pain. Things only got worse after returning home. Pat was hospitalized for 4 days in late August, during which she bounced back and forth between severe diarrhea and constipation, her intestines became painfully hyperactive, she suffered severe gastroesophageal reflux with associated costochondritis (painful inflammation of her rib cage), and she could barely tolerate eating. To our relief, she tested negative for all of the nasty bugs that she could have picked up south of the border (we weren't expecting anything, as she stayed at a top-notch hospital). However, prior to her hospitalization here in the States, I had noticed that much of her pre-coma pain appeared to be gone. I could, for example, rub her hips, lower back, and buttocks region without hearing any complaints of pain. She could also lie on her hips for extended periods of time, something that was impossible prior to the coma. By early this week, her gastrointestinal problems had pretty much resolved, and with that, her tailbone pain has often been as low as a "5" (on a scale from 0 to 10). More important, her pelvic pain now seems pretty much restricted only to the immediate area of tailbone. This is a huge improvement from her pre-coma condition! She still has some burning pain in her shins, but she feels that this is quite tolerable. As of today, she has undertaken 5 electroconvulsive treatments (ECT; see above) in the past two weeks, which certainly could have provided some benefit (I suspect so). However, the fact that I had noticed how limited her remaining pain was prior to beginning ECT leaves me convinced that the ketamine treatment provided substantial pain reduction. Frankly, considering how crippled she was with pain before the coma, and how close she was to giving up, I believe the coma treatment saved her life. Thank you Dr. Cantu, Dr. Kirkpatrick, and Barry family members!Day 33 (Saturday, August 16) – We arrived at home in the wee morning hours. The trip from Mexico to home was neither easy nor pleasant, especially for Pat, but we made it in spite of her worst fears. Although the pain proved to be a real challenge, I was impressed that she had the leg strength to manage without a wheelchair.
This brings us to the end of Pat’s ketamine coma journey. Unfortunately, her pain today was just as bad as when we left for Mexico, in spite of the mega doses of ketamine during the 5-day coma, 3 big boosters, and the 3 days of continuous slow infusion. Perhaps things will calm down some in the coming weeks (one can always hope). There are no words to describe our disappointment, as we certainly hoped for a better outcome. However, we knew in advance that ketamine is not the answer for everyone, and we have come to terms with where things are at. I have no regrets whatsoever about the experience. I admire my wife’s courage in giving it her best effort. I am awed by the love and commitment demonstrated by her family members. Many others, including some I have never before met, have followed this story and wrote to offer encouragement and support. I can’t say enough good things about Dr. Cantu, the hospital, and the friendly people in Monterrey, Mexico; they are running a first-rate program for the unfortunate victims of CRPS/RSD pain. Regardless of our experience, I have absolute confidence in the value of ketamine for controlling and even curing severe CRPS/RSD pain. I don’t understand why Pat’s pain failed to respond better, but we will try to remain positive as we proceed to the next option—presumably electroconvulsive shock therapy (ECT). I think I will go ahead and blog what comes ahead, but for now the daily updates will be put on pause. (Incidentally, I’ve added supplemental items to the Day 20 and Day 29 posts.)
Day 32 (Friday, August 15) – Pat had a good night of sleep. After the ketamine drip was discontinued, we packed up and waited until 2 pm to decide whether or not Pat felt up to making our 5:30 pm flight. I had some real doubts, but somehow Pat found the inner resolve to go for it. We said good-bye to our wonderful friend, Dr. Cantu, and other hospital staff who had been so thoughtful and caring during our protracted stay. We took a cab to the airport, optimistic that Pat’s pain and gastrointestinal discomfort would not be too big a problem for the flight home. To our dismay, our flight to Dallas was cancelled, but American put us on an AeroMexico flight into Guadalajara, and from there into Ontario, California. During our layover in Guadalajara, we found a Chili’s restaurant with a bench seat where, mercifully, Pat could lie down. My student, Aaron Corbit, kindly showed up at 11:30 pm to pick us up at the airport with our camper van.
Day 31 (Thursday, August 14) – Unfortunately, Pat was awake all night, mostly struggling with the painful digestive problems caused by her inability for several weeks to eat solid food (think “fiber”) and the effects of the ketamine on her gut motility (slowing things down). By morning, things began to work better and she eagerly devoured a fair-sized meal. Thanks presumably to 7.5 mg mirtazapine (Remeron), which is by far the best sleep medication she uses (alternating with Ambien CR), she slept much of the day. Finally, I got in a good chunk of time with e-mail (still waayyy behind) and some manuscript writing and editing work. Feeling a bit more pain in the evening, Pat had the continuous infusion increased to 30 mg/hr, but it didn’t help much. Eventually, she asked to have it returned to 20 mg/hr, hoping to fall asleep again…which just now happened (it’s 3:00 am). Oh yeah…I was definitely entertained today by recent claims and photos (picked up by thousands of news outlets) that a Bigfoot carcass discovered in north Georgia is presently sitting in someone’s freezer. Honestly, I’d give the story more weight if just one report mentioned the word “stench” <yawn>. We fly home to California tomorrow (hoorah!), but we will miss the Bigfoot “press conference” that, for some odd reason, will be held on the west coast, far, far from the freezer full of fancy, fur, and fortune.
Day 30 (Wednesday, August 13) – Thanks to the ketamine drip (which makes her feel wired), Pat was unable to sleep during the night and got up a few times to walk down to the nurses station and chat with the ladies—as best she could, that is, while learning some more Spanish. Fortunately, she managed a 3-hour nap later in the morning. Dr. Cantu gave her another big ketamine booster (850 mg/2 hours) in the early evening and then resumed the steady drip. Pat is so sweet and affectionate as she wakes up from ketamine that I kind’a enjoy the time with her. The only evidence of delusion or hallucinations is her occasional “you’re the best husband in the world” between the more frequent “I love you’s.” I am certain I will regret not recording this stuff for later playback... Incidentally, I’m now on antibiotics for laryngitis and a cough.
Day 29 (Tuesday, August 12) – We checked out of the motel and into the hospital. After entertaining Dr. Cantu with lots of conversation, including an effort to expand her Spanish vocabulary, Pat took a sizeable ketamine booster (700 mg/2 hours) followed by a steady drip of 20 mg/hour to keep the pain from returning. She took the booster very peacefully. When she awakens from ketamine, I’ve learned to keep her mind engaged with lots of questions and tender comfort (she loves kisses) so that she does not drift into weird dreams or hallucinations. Works well! The drip was a different matter. At times, it made her very uncomfortable, especially the visual distortions (I appeared to have one eye or as many as four and was just 3 feet tall) and the odd sensation she described as feeling like the rock creature in the movie Galaxy Quest. I kept telling her to remember that this was “the feeling of healing.” (Incidentally, the buzzing that was so annoying when waking from a nap ended when her pain returned last week.) At other times, she was a bit giddy, a tad bit short on memory (asking four times after dinner, “Did I eat my supper yet?”), and enjoyed a mostly-steady walk out to the waiting area. As with every day, she talked often of our kids—Shannon, Jessica, Krista, and Nico—who greatly inspire her to keep going. Unfortunately, my voice virtually vanished this afternoon. I don’t know what’s happened to my throat.
The Hospital San José Tec de Monterrey is a very impressive institution.
Photo: hospital PPT document
Day 28 (Monday, August 11) – Today was a little better for Pat. We remained in the hotel room, watching TV and focusing on positive things. Pat is now eating solid foods and doing some exercise to regain her strength. Dr. Cantu will admit her to the hospital tomorrow morning for several days of ketamine boosters. I have been impressed by the courage of prior coma patients (and/or their family members) who describe their experiences online. I now know some of the anguish they experience when things take a turn for the worse (at which point some discontinue their updates). It’s painful to write anything at all, and you begin to question why you are doing so. As a researcher and someone who relied on such reports when considering the ketamine coma, I know that future coma patients deserve to read an unbiased selection of accounts regarding the procedure. If there is any value in what I am sharing here, it will certainly be a private experience unique to each individual reader.
Day 27 (Sunday, August 10) – Pat’s fighting spirit was back in full force today. This evening, we had a joint discussion with Dr. Cantu and with Dr. Kirkpatrick, who joined us by speaker phone. I think I’m forming a better picture of what may be going on. Unlike most RSD/CRPS patients, Pat’s pain has been fairly focused, residing near her tailbone, deep in her pelvis, and along her shins. Although the burning pain had spread to her hips and the surgical site for her intrathecal pump prior to the coma, she did not have the widespread allodynia (pain to light touch) typical of most RSD/CRPS patients. In many ketamine coma patients, the RSD pain component diminishes remarkably or goes into complete remission, but the site of original injury, perhaps with local nerve damage, responds less well and can often remain painful. Some forms of pain (I won’t elaborate on differences) presumably respond better to ketamine than others. Unfortunately, much of Pat’s pain seems resistant to the ketamine. The pain has returned to the same primary areas with considerable intensity, but remains less widespread. We hope that boosters can offer further improvement, but we need to consider some alternatives.
I hit the internet over the weekend, taking advantage of my university’s access to medical journals to explore, as I do so often, possible solutions to our dilemma. I was encouraged to find some papers demonstrating that electroconvulsive therapy (ECT), which is highly effective for severe depression and available through our insurance, often reduces intractable pain as well, including that from RSD/CRPS. Up to this point, we thought we had exhausted essentially all options other than brain stimulation. Deep brain stimulation (involving risky surgery) holds some promise, as does transcranial magnetic stimulation (applied externally but with shallower stimulation), which should become available within a month or two. Having ECT as a more immediate option definitely buoyed my spirits. I think Pat took encouragement as well.
Day 26 (Saturday, August 9) – Pat had lumbar and pelvic MRIs today. Lying still for an hour or so flat on her back was very uncomfortable. Nothing obvious was immediately apparent from the images, but the official report won’t be available until Monday. This evening, Pat kind’a fell apart. She doesn’t want to return home in the same condition she left. Up to this point, she seemed to handle things better than me, though I had internalized my thoughts, wanting to avoid discussion of pain as much as possible and keep her mind distracted with television and massages. Having followed the recent tragedy on K2, the world’s second highest and most dangerous mountain where 11 mountaineers lost their lives in a tragic mishap, I felt as though my wife had slipped off the mountain and was dangling by a rope wrapped around my waist. Actually, it seems as though we’ve been in this desperate situation for a long, long time.
Day 25 (Friday, August 8) – We made the difficult decision this morning to remain longer in Mexico. I don’t know when we will return. Tomorrow, Pat will undergo an MRI to make sure we are not missing something. Fighting chronic pain is like living a nightmare in slow motion, and wondering if it will ever end. I can tell you that Pat has put her best effort into this, and is not ready to give up. All things considered, she seems to be holding up okay in spite of recent developments. From our room, we watched The 11th Hour, Leonardo DiCaprio’s powerful documentary about the global environmental problems that threaten humanity’s existence. On CNN, we enjoyed seeing highlights of the 2008 Summer Olympics opening ceremonies and were stunned by the recent revelations of a not-so-admirable politician.
Day 24 (Thursday, August 7) – It’s been 13 days since the coma ended and 48 hours since Pat first became aware of any discomfort in the area where her pain was once so vicious. She slept off and on most of the night and into the early afternoon. We’re both catching up on our sleep now. However, despite yesterday’s booster, the pain was still present and it increased during the afternoon and evening. It’s a struggle to write anything at all tonight. We have not only our own emotions to contend with, but also the sense of letting down so many family members and friends (and others unknown to us) who are following this story. We have been fighting a formidable foe, and we’re not sure what step to take next.
Day 23 (Wednesday, August 6) – My brave wife hopped aboard Mr. Toad’s Wild Ride for another, albeit briefer, excursion this afternoon. Way cool Dr. Cantu gave her an 850 mg ketamine booster in 2 hours; take my word for it, this was a big dose. She told him in advance to give her what he thought would be best (courageous thing!). It’s late at night now and she is still buzzing and has distorted vision, but she is holding down occasional nibbles of food and enjoying some leg rubbings as I try to type. No dancing tonight! I really wish that I could experience these treatments for her instead and give her a break…or at least learn firsthand what ketamine is all about. But, as Dr. Cantu pointed out, no one is going to administer the drug to me without a legitimate medical condition, and I’m not about to try the “recreational” approach (yes, there are some who abuse this drug). C’est la vie—oops, in Spanish it would be Así es la vida or Eso es la vida (according to Google Translate).
Day 22 (Tuesday, August 5) – From my perspective, today was awesome. Pat seemed much like her old self despite the lingering problems. However, she discovered some tenderness when touching the prior area of worst pain near her tailbone, so we reassessed our options and decided to remain in Mexico a few days longer. She will get a ketamine booster tomorrow afternoon (though not yet confirmed) and anticipate more boosters every 2 weeks, as recommended, for the next 3 months. Although she does not look forward to the boosters, her fighting spirit is in full force this evening and, in her words, we are “here for the whole enchilada.” We have rearranged our flight home for Friday, August 8. Incidentally, we were excited to learn from CNN that a population of 125,000 lowland gorillas was discovered recently in Africa, which was more than double the number thought to remain in the wild! And, from Lindsay Spengler, whose father is a microbiologist/chemist, we learned that a group of captive monkeys loved watching movies--except that they went ape upon seeing Anaconda, and disliked Jurassic Park, too. Whoa...the music is on and Pat now wants me to dance a bit with her...
Day 21 (Monday, August 4) – Pat slept fairly well during the night and much of the morning, though never more than an hour or so at a stretch. Ten days after awakening from the coma, she continues to feel a very uncomfortable buzzing sensation every time she wakes up. She walks around for 20-30 minutes to get the buzzing to dissipate and then falls back to sleep. She is becoming depressed by this routine and her throat that remains acutely painful. In the afternoon, Dr. Cantu kindly sent us to an otorhinolaryngologist, Dr. Carlos Cuilty, who scoped her throat and determined that there was significant inflammation but no structural damage. He prescribed her a medication to reduce the inflammation. Hopefully, the throat and some abdominal discomfort will soon resolve, but I have the feeling the sleep-induced buzzing will continue for a good while, and it worries me some, as she finds it very distressing. After cancelling our flight home today, I rescheduled it for Wednesday.
Day 20 (Sunday, August 3) – Finally, we returned to our hotel today. Despite this step, it was a trying day. Suzi departed in the morning, and we were definitely sad to see her go. Pat awoke with her throat hurting more than the day before, and she struggled through the morning, which has been the pattern of late. She felt better as the day progressed, but continues to eat poorly and just on soft foods due to the sore throat. We miss the television programming at the hospital, as the motel has only a few channels in English.
Here is a beautiful letter of support written by my youngest daughter’s pastor in Coeur d’Alene, Idaho (posted here with permission):
Dear Bill,
Krista has faithfully been keeping me posted on the treatment of your wife Pat. My heart has been deeply touched by her—and your's—journey of pain. My wife, Jana, was seriously injured 19 years ago and has walked a silent and unsettling pathway of pain. For a while she could not walk; then she relearned how to move each of her toes by willing herself to trace the letters of the alphabet in the air with each toe. I still remember how I felt we she could retake steps. Now she is managed on a strong pain-medication format that allows her to function quite normally when with others. Pat's condition touches our heart on a very tender level. We are praying for you! I will continue to read the reports and updates that come through.
The funding of treatment and rehabilitation is critical. I wish I had unlimited resources at times. I know that God often opens a way through the flood only as we are literally, as ancient Israel at the Jordon, stepping into it.
Don't you just want to scream out at times at the injustices and pain and injuries and hurts of this world? Take what we are individually experiencing and multiply it by the population of the sin-weary planet. At this moment weddings, births, funerals, accidents, surgeries are taking place all over the globe. Some events are celebrations... many others bring tears and despair. I want to cry out "Enough! No more!" I certainly want to shout out for Pat. I hang on to John 14:1-3 and Revelation 21:1-3 – Jesus has gone to "prepare a place" AND He will be coming soon and there will be "NO MORE sorrow, sickness, crying and death... for the former things have passed away." I cling to this promise.
I am so sorry for what you are experiencing. I won't try to make sense of it. Trying to make sense of it often trivializes its ugly intrusion into our lives. I hate it, I oppose it, and... I cling to the promises of God.
Please know that we are with you in those silent and unspeakable moments,
With much love and prayers,
Lloyd Perrin
PS – Krista is such a super young lady. It was an honor to baptize her last summer and spend a few moments with you and Pat.
Day 19 (Saturday, August 2) – Today was excellent. Pat didn’t sleep much, but continued to gain physical and emotional strength throughout the day. She walked all about the room, took her first shower since the coma, visited the former coma patient and mother twice, and took in the scenery from the large windows in the visitor’s area. She played cards with Suzi and enjoyed a few movies on the TV. It looks like we will be leaving the hospital tomorrow. We continue to get beautiful e-mail messages—some from people we haven’t met—that often bring tears to our eyes as we read them. Pat’s daughter, Shannon, sent a particularly affectionate letter today, as did her brother, David, and sister-in-law, Kris. Sister Regina forwarded some wonderful pictures of Pat’s son, Nico, enjoying a visit from his cousin, Liz. Another sister-in-law, Sheryl, has sent a steady stream of encouragement. Thank you all for sharing the love!
Day 18 (Friday, August 1) – Pat slept close to 5 hours during the night and another hour late in the morning. This is the most she’s had since waking up from the coma a week ago. Her sleep bouts last only about 1 to 1.5 hours, and when she wakes up, she continues to feel very distressed by the buzzing that takes 30 minutes or more to pass away, which delays her return to sleep. A gentle massage helps the buzzing disappear more rapidly. Her throat has improved a bit and she is eating more. This evening, she got into the wheelchair and we visited with a former coma patient who had returned with her mother for booster treatments. Most meaningful to us, she is telling Dr. Cantu and others that her RSD pain is gone. We don’t bring up the topic, but it’s a relief each time we hear it come from her. Tomorrow, her antibiotic drip and intravenous fluids will be discontinued. It looks like we will postpone our return home from Monday to Wednesday next week, as she will need a ketamine booster before we leave.
Day 17 (Thursday, July 31) – Today started out rough. Suzi was the hero of the night, helping Pat cope with her insomnia, painful throat, and benzodiazepine (midazolam) withdrawal symptoms. Each time I awoke from my slumber on the couch to give Suzi a break, she insisted I get some more sleep, which I did—probably the most I’ve had at one time since our arrival in Mexico. Fortunately, Pat improved as the day went by, especially after getting some oral benzodiazepines. By the time Suzi returned from her break late in the evening, Pat was holding down her food and was ready to have her legs shaved! She and Suzi are enjoying a movie as I write. It's nice having internet access in the room. I don't know how we would be communicating with the nurses (enfemeras) if we did not have an online translator. Sometimes my pigeon Spanish (mastery of 30-40 key words) gets us by and sometimes we have a nurse who speaks sufficient English, but often a nurse and I will take turns typing phrases on my laptop and clicking the "translate" button. Kind'a funny! (We miss your fluent Spanish, Chris!)
Enjoying the view from the 8th-floor visitor's area.
Photo: Suzi Barry
Day 16 (Wednesday, July 30) – Today proved to be a bit difficult. Pat’s sore throat has been a major problem and her abdomen continues to hurt some. She is hardly able to eat anything. To top things off, Dr. Cantu tried to wean her off the midazolam (versed), which she had large doses of during the coma and in the days following, and she now appears to be in withdrawal. The symptoms have been unpleasant. She manages an hour or so of sleep several times a day but wakes up with the buzzing sensation that distresses her. On the positive side, Suzi and I took her for a wheelchair ride to the visitor’s area. Being on the 8th floor, the view is rather impressive. Carrie, the other coma patient, stopped by for a visit with her family before returning to the hotel room. We’re looking forward to returning to the hotel room, too, but it will still be a few days or more. Fortunately, the private hospital room we are in is very nice. Somehow, Pat manages to remain mostly upbeat. Suzi generously rearranged her flight to stay a few days longer. What a sweetheart!
Day 15 (Tuesday, July 29) – Pat’s gastrointestinal problems improved markedly today, much to her relief. However, her throat made last night especially difficult; by early morning, she was finding it a struggle to breath. She received frequent breathing treatments throughout the day, providing some relief, but she will need some more time before seeing improvement. Apart from this setback, she is doing very well. The vivid ketamine-induced imagery that she’s been seeing when her eyes are closed has faded considerably. When she wakes up from a nap, however, she is disoriented for about 5 minutes, trying to sort out her colorful dreams from what is real. She managed maybe 3 hours of sleep off-and-on last night (I did a wee bit better myself), and another 3 hours or so this afternoon, according to Suzi. Dr. Cantu told us that her lungs have cleared more from yesterday and her blood work no longer shows any evidence of infection. This evening, she was pleased that she could tolerate the television at last. Most important, although she has mentioned lingering tailbone pain on occasion, she is sitting often on her bum and is not complaining of pain. We received a sweet and very encouraging email from Lindsay Spengler, a former ketamine coma patient (www.caringbridge.org/visit/lindsay and www.rsdfoundation.org/en/Lindsay_Synopsis.htm), several days ago. We really loved a couple of statements she made: “RSD is a nasty disease but I am so grateful we have each other (and ketamine of course);” and, in reference to the treatment giving back one's life, “Praise God for that and Dr. Cantu!”
Dr. Fernando Cantu graciously posed for a picture with Pat today.
Photo: William K. Hayes
Day 14 (Monday, July 28) – Today was a long one. Wow, have I really been in Mexico for two weeks now? Chris and MaryElise had to leave this morning; we will miss them, but I think that Suzi and I should be able to handle things okay the next few days. Fortunately, Pat was very calm and rational today, and we enjoyed a lot of laughs amidst ordinary conversation. However, Pat continues to be unable to sleep. When she closes her eyes, she sees extraordinary moving images of people, animals, and objects. She also experiences a continuous buzzing sensation. I call her ketamina loca (“ketamine madwoman”). Of course, these visual hallucinations and sensations will diminish over time. Her night was much calmer than that of her fellow coma patient, Carrie, whose family shared some pretty astounding stories with us. Pat is losing her voice, having awakened with a sore throat from the orogastric tube and then having talked non-stop for roughly 48 hours. To top it off, she tested positive for a respiratory infection and is receiving antibiotics once again. We moved into a private room this afternoon and, despite her flagging voice, she spoke on the phone with her mother, daughter, and son. At this point, the biggest problem is increasing abdominal bloating and an ill-placed rash associated with excessive gastrointestinal tract activity. This too shall pass. Wait a minute...it's 11:35 pm and Pat is definitely asleep. Hooray!
Day 13 (Sunday, July 27) – Late last evening, Pat became increasingly silly, laughing hysterically at everything and repeating some things over and over. One phrase was "it's a weird sensation buzzing all around me; I'm like Sheryl on a normal day" (followed by laughter). And “I’m loony toons” (followed by more giggling). During the night, she slipped deeper into hallucinations, seeing and describing things that weren't in the room. Around 4:30 am, we had to restrain her arms and legs, as she became obsessed for an hour or more with shoving the tube entering the face mask into her mouth, and flailed angrily when we tried to stop her. Next, she transitioned to a calm and detailed description of a very slowly morphing dream involving a machine that was rolling on wheels, had a passport moving across a hole, and had a CD rotating in it. Dr. Cantu was on his back in the machine, and the machine was going into her body. Eventually, a sitting Jared holding medicine in a bag replaced Dr. Cantu, and bright lights appeared on the machine that was no longer associated with her body. She illustrated the vision with frequent hand gestures and insisted we move if we stood in front of her gaze. This lasted harmlessly for hours! In the afternoon, she was watching a “world class performance” with elephants ridden by Pakistanis; children with flowers eating fruit, peanuts, and candy; a $100,000 horse that broke its leg; and some unhappy people who whose credit cards had large bills—and Dr. Cantu told them he would pay for it all. This was all so very entertaining to us. By evening, she became more lucid and started recalling more and more about why she was in Mexico. Her speech, which had been rapid-fire to this point, slowed down to normal. She came to the realization that what she was seeing with her eyes open (us in the room) and what she could see with her eyes closed (the graphically detailed scenes still present) were very different. Funny how the mind works! We learned that Carrie, the other coma patient, was having increased hallucinations as well. After the night shift, MaryElise and I returned to the hotel to get some afternoon sleep. Having been at the hospital since Thursday night, I enjoyed my first shower in three days. All in all, a terrific day.
Pat having a "loony toons" laugh with her sister, Suzi.
Photo: Chris Barry
Pat giggling it up while looking at family photos with her sister, MaryElise.
Photo: William K. Hayes
Day 12 (Saturday, July 26) – She's b-a-a-c-c-c-k-k-k-k-k! After a very frightening 24 hours, Pat came back to life today. By this morning, her eyes were finally holding a gaze on us, following us when we moved and moving from one person to another depending on who was talking. Apart from that, however, there was absolutely no responsiveness. There was no light on upstairs, so to speak, though it did appear that my voice could calm her down a bit when she had difficulty breathing from the tubes and phlegm in her throat. The doctors seemed as concerned as we were. At 10:20 am, she became very agitated for about 10 minutes, culminating in what resembled a mild seizure. Her nurse and another doctor got Dr. Cantu in right away (he was in surgery). I asked if some midazolam (versed) would be a good idea to calm her down, and he said he was having difficulty making up his mind. He didn’t want her too sedated because he wanted her breathing to continue improving so she could be taken off the ventilator soon, but decided to go ahead and give her 5 mg. Within a minute or two, she dramatically came back to life—moving her head and responding to questions with head movements and hand squeezes. Dr. Cantu then gave her a steady drip of midazolam and the improvement continued rapidly. Last evening, the doctors thought the problem might be midazolam related, but were unsure whether she might be in acute withdrawal (highly unusual) or had excess accumulation (8 mg/hr for the duration of the 5-day coma). It appears to have been the former. Several hours later, they removed the tubes from her throat and she has talked non-stop since. It’s been music to our ears! Initially, she became increasingly panicky about breathing, as it took a lot of time and coughing to clear the phlegm from her trachea, but we quickly learned that by asking questions we could keep her calm and the chatter very positive, often amusing. Fortunately, she awoke with good body control and never flailed or became difficult to handle (a nice surprise). Some confusion remains evident, as expected, but she is doing splendid. I don’t believe she remembers any frightening hallucinations, thank goodness. I think we will all sleep much better tonight!
At last, Pat comes back to life, enough so to smile with nurse Trinidad Granados.
Photo: William K. Hayes
Day 11 (Friday, July 25) – They began tapering Pat’s ketamine infusion early this morning and then stopped it altogether at 10 am. Today proved to be much more difficult than I expected, not because of the hallucinations, confusion, and struggle that we anticipated and I was certainly ready for, but because she is not waking up. Neurologically, she is checking out well, so it looks like she just needs some time. Her sister MaryElise arrived at 1:00 am this morning, and after confusion at the front desk of the hotel, she headed up to the hospital when neither Chris nor I was there; we had decided to get a good night of sleep since Pat was doing so well. I rushed up to the hospital to find MaryElise already at Pat’s side. I ended up spending the night in the room we were given at the hospital while MaryElise, a night-shift worker, maintained the vigil. Another sister, Suzy, arrived early in the afternoon. It was a real blessing to have Pat’s brother and sisters for support. Please pray for my wife.
Pat's brother, Chris, keeps a watchful eye on Pat.
Photo: William K. Hayes
Day 10 (Thursday, July 24) – Pat entered the final day of her coma with a mild fever but normal blood values. As a precaution, they gave her an antibiotic. Otherwise, she is holding up very well. Maureen and Judy took a flight home earlier this morning, and another sister, MaryElise, the fourth nurse in the family, arrives tonight. Pat, by the way, is the fifth nurse in a family of nine kids. I spoke on the phone with both of my parents this morning; it was really good to hear their voices. My mother had just sent a very sweet email message. She included the words of another fighter, Paul, who wrote, “Who shall separate us from the love of Christ? Shall tribulation or hardship or persecution or famine or nakedness or danger or sword? ... For I am persuaded that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.” I wish that my love could be so perfect. However, it’s encouraging to know that a greater power is watching over my wife as she sleeps. She is not forgotten or abandoned. It’s hard to understand why she has suffered the condition that brought us here, but we have been given a remarkable opportunity to get the best treatment available and a fresh beginning. Tomorrow begins the difficult time for everyone. Pray that, for Pat, she he has a relatively peaceful transition to the real world and recalls very little of the tricks her mind will play on her.
Pat's excellent care in action, thanks to a nurse named Efi.
Photo: William K. Hayes
Pat's guardian angels: her sisters Maureen Souza (left) and Judy Franks (center), and brother Chris Barry (right).
Photo: William K. Hayes
Day 9 (Wednesday, July 23) – This marked the start of the fourth day of Pat’s coma. The fifth day will begin tomorrow and the ketamine will be stopped on Friday morning. Then the really tough part begins. The good news from Dr. Cantu this morning was that Pat has yet to spike a fever, which all of the coma patients experience. He was very surprised by this. Perhaps her good fortune is because of all the attention lavished on her. One of us is at her side nearly all of the time, and her sisters in particular are repositioning her often (I do so less because I'm there in the daytime when they move her while doing other forms of care). When she moves a bit and opens her eyes, I definitely sense some responsiveness to my soothing voice. Pat’s brother, Chris, arrived from Arizona late this afternoon, and he’s another nurse! The four of us had a nice dinner together. Pat’s family has really rallied to support her. Two more sisters will be coming shortly; that’s five siblings altogether, and all but one is a nurse. I should add, though, that the nursing care by the hospital staff is truly superb; we're all very impressed. Hurricane Dolly produced some mild storms this evening after coming ashore. I hope it doesn’t rain too much tomorrow.
Buenas Noches!
Pat rests comfortably as ketamine is infused into her body and other machines monitor and sustain her.
Photo: William K. Hayes
Day 8 (Tuesday, July 22) – On this, the third day of Pat’s coma, I was pleasantly surprised to find that a wireless signal has now found its way to her room; I hope it persists! Pat continued to do well, with no signs of infection or other problems. Her nurses have been terrific. I make it a point to show them pictures of Pat when she was able to hike and help with my field research. They love the photos. I also tell them she was a nurse before the pain overtook her life. I want them to feel an emotional bond with her. Speaking of emotions, I have felt especially touched by a number of kind words and gestures over the past few months. Family members have been incredibly supportive, but others have offered unexpected warmth. One great friend offered repeatedly to accompany us to Mexico; what a sweet guy (we had enough family members coming and the care she will need is a bit intimate for someone she does not know well). A colleague from Arizona, who was a fellow student and rattlesnake researcher from my grad school days, had read through Pat’s synopsis at Dr. Kirkpatrick’s website (http://www.rsdfoundation.org/en/Patricia_Failers.htm) and even viewed the videos. He wrote, “I must say that even though Pat was obviously in pain and very uncomfortable in the video, she still looked beautiful and she had the expression of a true fighter.” A fighter indeed! I shared this and other messages with Pat prior to the coma. I know that the loving support put her in a better frame of mind before starting Mr. Toad’s Wild Ride. If you wish to send any encouragement for her “awakening” this coming weekend, her email address is pebarry27 AT gmail.com. I will read out loud your message to her…and probably repeat it a few times, as her memory may be impaired for several weeks. There was no Braves game to watch on TV tonight—a disappointment. Tomorrow will be interesting, as Hurricane Dolly should be coming ashore just north of us. We will certainly experience some weather!
Pat's sister, Maureen, continues the vigil at Pat's side.
Photo: Judy Franks
Day 7 (Monday, July 21) – This began the second day of Pat’s coma. I took the day shift at Pat’s bedside, lingering past 6 pm (well after Judy arrived to replace me) because I wanted to see Dr. Cantu before leaving. Earlier, he had stepped up the ketamine infusion rate to 4 mg/kg/hr (close to 200 mg/hr for Pat). With the higher dose, she was less restless, at least during the hours I was there. He will continue to step up the dose by 1 mg/kg/hr each day of the coma. Today, with the additional boluses occasionally given, she received nearly 6,000 mg—more than she got during all of the 9 days of outpatient ketamine therapy in December 2007 (typically 500-600 mg/4 hours). I have enjoyed getting acquainted with Carrie Deussing's husband, Arthur, and his father, Jim. They are very likeable guys, and they most definitely want to “be there” for Carrie. We had lunch together at a Subway adjacent to the hospital. Carrie and Arthur, by the way, are blogging their experience at her foundation website (http://carriedeussingrsd.webs.com/myblog.htm). To my amazement, she raised more than $40,000 for her treatment! We have now been given a spare room at the hospital, where a family member can “hang” while another is in the room with Pat (the Deussing’s were given a room as well). How very nice! When I returned to the motel room, I was stunned to catch the last inning of an Atlanta Braves game against the Florida Marlins. The Braves are my team, and since TBS dropped their games this season I very rarely have the chance to see them play. Maybe I can catch tomorrow’s game—never mind that it’s broadcast in Spanish.
Pat's sister, Judy, maintains a vigil at Pat's side.
Photo: Maureen Souza
Day 6 (Sunday, July 20) – This is it...D-Day...or maybe I should say K-Day, in reference to what some refer to as the “K-hole” state that ketamine induces. We arrived at the hospital to begin the admission process at 8 am. At 9:10 am, I was asked to give Pat a good-bye kiss and head out the door of her Intensive Care room. She then began what she affectionately dubbed this morning "Mr. Toad's Wild Ride" (if only it could be over as quickly as Disney's famous kiddie ride!) A few hours later, my sisters-in-law, Maureen and Judy, arrived after in the visitor's area after a red-eye flight from California. These two ladies are experienced nurses who took compassion on their sister and begged off from work to lend support. I was so grateful to see them! Soon, we were allowed to return--one at a time--to Pat's room and be at her side. She must have had 10 or more tubes coming out of her body. The ketamine infusion began at close to 150 mg/hour (technically, 3 mg/kg/hr), accompanied by occasional boluses. The dose will gradually be increased until she should be getting 500 mg or more per hour the last few days. By comparison, when she has had ketamine infusions in the past on an outpatient basis, she typically received 500-700 mg during a 4-hour period (and emerging from the anesthetized state was difficult enough then!). At the very large doses during this coma, the ketamine molecules should act like tiny Pac-man characters crawling around her body, seeking out and destroying the many NMDA pain receptors that have proliferated in the last year-and-a-half, converting her delicate nervous system into a relentless pain-conducting conduit. As I sit beside her, typing this message, I am listening to an assortment of love songs broadcast from a tiny MP3 player through a small battery-powered speaker. We ordered an 8-CD set of love songs in advance, hoping the music would help keep her mind positive and relaxed should there be any awareness during the coma. It's kind'a hard to keep back the tears as I look at her. Probably because she has had ketamine previously, she is restless and moving around quite a bit, but she looks comfortable. I will be with her until 10 pm, at which time my sisters-in-law will return from their afternoon nap and take on the night vigil at her side. My heart will stay with her, though, when I return to the motel to engage the internet, shower, and get some sleep.
The coma begins. Pat is not alone in the room, as a family member is nearly always at her side.
Photo: William K. Hayes
Day 5 (Saturday, July 19) – Once again, we spent the day in the motel, watching TV and DVDs and reading Clive Cussler. Pat is unable to sit for any length of time, as her tailbone region is the area of worst pain. Walking around aggravates the pain, as does riding in a vehicle. Otherwise, we would have checked out the surrounding area. The mountains certainly look inviting. Fortuitously, I had bought a camper van with a couch/bed nearly a year before her pain became so extreme. This proved to be a lifesaver; never in our wildest dreams did we anticipate depending on that vehicle for trip after trip seeking medical care in the months to come. Our home in Hemet is 40 minutes from Loma Linda and 2 hours from Los Angeles; she sometimes had more than five appointments a week at these locations, necessitating a lot of driving. We've even spent a handful of nights in the van, camped just outside the UCLA Medical Center, waiting for early morning treatments. The Pat I married can't stand to be shut in a house for long; thus, she has come to feel extremely bored and depressed much of the time. Most evenings, especially this time of year, we would ordinarily head to a nearby canyon with our two energetic dogs and take a leisurely walk along the road. During our walks, we encounter lizards, tarantulas, owls, and an occasional snake—always to our great delight. We especially enjoy finding a rattlesnake (I actually do research on these creatures); three species live in this beautiful canyon, which is also home to the endangered Arroyo Toad. On rare occasion, we see a Bobcat or a Swift Fox. We have yet to see a Mountain Lion, but they are certainly present, and we imagine they have studied us from a hidden vantage point on more than one occasion (which is the real reason I always like to have a snake stick in hand). If we leave the canyon shortly after sunset, we often pause at a bridge on the way home to watch a cloud of thousands of Mexican Free-tailed Bats emerge to begin their nocturnal foraging. Yes, before this illness, we lived a charmed life--one that we hope to resume if this extreme treatment works as well as we hope.
Day 4 (Friday, July 18) – We stayed at our motel room today. We broke up the time by watching CNN on TV (there are just a few channels here in English), watching several DVDs on my laptop, calling some family members (we downloaded and figured out how to use Skype for just 2.1 cents per minute), and my reading out loud a Clive Cussler novel (we've enjoyed a handful of these the past few months). As usual, I also spent much of the day rubbing her feet to distract her from the pain. This seems to be more effective than any pain treatment or medication she has had thus far, though my hands and wrists certainly do get sore--especially if the free hand is used to hold open a paperback while reading to her. For supper, I went next door to Soriano's—a store very much like a Super Wal-Mart near our home in California—and bought a can of peaches and a pint of ice cream. These two items, which she eats together (the former for fiber, the latter for calories), have been a primary staple for her the past few months. With determination and effort, she has gained 18 pounds since last December, when she had dwindled to a frail 88 pounds after her 9-day lower-dose (non-coma) ketamine therapy and ultra-rapid opioid detoxification (which dramatically reduced her pain, but it did not hold). Later in the evening, Carrie Deussing, the other coma patient, called from her motel room to tell us that Lindsay Spengler, a former coma patient, had written another entry in her own pain blog. I was touched to see, nestled amidst a list of prayer requests, her mention of "the two other coma patients that are now in Mexico." Lindsay's courage in the face of very difficult circumstances has no doubt been an inspiration to more people than she will ever realize. Hang in there, girl!
Day 3 (Thursday, July 17) – The internet wasn't working much of the day. Bummer. This afternoon, I went alone to the Hospital San Jose Tec de Monterrey for an hour to get a tour of the facilities provided by Cassandra Fuentes, the Foreign Patients Coordinator. I was impressed with all that I saw, especially the private room to which Pat will be moved once she has emerged sufficiently from the coma. Early in the evening, Dr. Cantu stopped by again for another visit. And then, after Pat asked where we might be able to rent videos (movies cost $10 + tax at the motel), he actually walked me to the mall, which is connected to the motel by a bridge, and took me to a video store. He created an account in his name and helped me select 6 videos that we could keep for 3 days. These will help the time pass! Now how many doctors in the U.S. would do this for a patient? And...now it's time to watch the first one, so I'd better say good-bye! But, before doing so, I've gotta say that Pat is holding up remarkably well. She's trying hard to stay upbeat, despite the continuing pain and knowing what she has to pass through. Some friends have been writing, telling us they are praying for success. It looks like her coma will begin on Sunday (day 6).
Day 2 (Wednesday, July 16) – We simply hung out at the motel today. We arrived a few days earlier than necessary, as Dr. Kirkpatrick was a bit concerned about working out details regarding Pat's intrathecal pump medication. Fortunately, in the last month we were able to wean her off of three pump medications (thank you, Dr. Hesseltine and staff!), with only the dilaudid (an opioid) remaining. The medications simply weren't providing much pain control. She will have the dilaudid replaced by saline and undergo withdrawal during the coma, thereby avoiding any of the misery and discomfort associated with the process. After a lengthy sleep-in, we discovered that breakfast at the motel (served 'til 11 am) offers a fairly diverse range of food items. Very nice. For lunch, I went to a store behind the motel that is very similar to a Super Wal-Mart and bought a few items. Pat watched TV while I caught up on some internet-based work. Dr. Cantu came by this evening for an hour's visit. He answered a lot of questions and asked a few of his own. Great guy.
Day 1 (Tuesday, July 15) – Today, we departed from Ontario (California) International Airport at 9 am. The 36 hours before departure were a bit of a nightmare, as I could not locate my passport Sunday evening, turned the house and vehicles upside down looking for it, and spent all day Monday making arrangements to drive to LA the next day to get a replacement. I felt horrible with the extra stress Pat had to endure. Then, at 9 pm Monday, I found my stupid passport in a hidden compartment of an old computer case that I had traveled with to the Bahamas last year. The airline wouldn't give us an extra day to depart without charging big bucks, so I stayed up most of the night packing and getting things ready—feeling the pressure of having lost nearly 24 hours preparation time—and everything worked out well. The travel was difficult for Pat, but she took extra medication to help her get buy. One of her physicians was actually on the flight with us on the first leg to Dallas/Ft. Worth! After arriving at the airport and clearing immigration and customs (we got a green light after pushing the button, meeting no luggage search...yeah!), we met Mario, the taxi driver that Elena (Cohen) Kassner, a former coma patient, had kindly arranged for us. After a 40-minute trip, we were relieved to finally arrive at our motel, the Four Points Sheraton. We have Cathy Remington, the mother of another former coma patient, to thank for guiding us to this motel, which she felt was the best option for coma patients. After buying a lunch/supper next door, we both took a nap and, after waking up, watched a movie we had brought with us. The television, unfortunately, has only a few stations in English.
Comments
Dear Pat, I have received word of your illness. I can’t imagine the challenges that you are facing. I wish you God’s gracious presence and healing. Our thoughts and prayers are also with your family. - Randall L. Roberts, Senior Pastor, University Church of Seventh-day Adventists (June 11, 2009)
We are thinking about you, Pat and Bill, and we are sending warm wishes and hopes for success with the second procedure. We love you. - Kris and Dave (June 6, 2009)
My wife and I wish you the best! I sense a break through very soon. - Edgar M. Fortune (June 6, 2009)
Hello Bill - So glad to hear Pat is awake and feeling pretty good. I'll keep all of you in my prayers. - Melissa (June 6, 2009)
Shannon, I am so sorry to hear about your mom. I do hope the treatments work for her. Please keep me informed about your fundraiser. Also, let her know that she is in our prayers. - Lee Kass (June 4, 2009)
Hey Pat, we're still praying daily for God to provide you with complete healing or at least long-lasting comfort and relief from your traumatic pain. Wish we could be there to help you out. Best wishes and God's blessings... - Floyd, Marta & Brett (June 3, 2009)
From daughter Shannon’s friends:
Please let Patricia know that she created a gifted artist that will honor her life in the legacy and life you live and the lives of those whose lives you impact for the better and for the good things you do in both your names. I will pray silently for both of you and for her pain to ease through your love for her. - Thomas (June 3, 2009)
Patricia, although I never got to know you and only met you a few times, Shannon has told me about you. I also know what an amazing daughter you raised, and that says a lot about a person... Mostly what a great mom you are, and a good person, which I'm sure Shannon has picked up from you. I want you to know that a lot of people are praying for you, and we all wish you well. All the best. - Braden (June 3, 2009)
I was told once by an amazing lit teacher if you can’t say it right, quote someone that can.
When things go wrong as they sometimes will,
When the road you're trudging seems all up hill,
When the funds are low and the debts are high
And you want to smile, but you have to sigh,
When care is pressing you down a bit,
Rest if you must, but don't you quit.
Life is queer with its twists and turns,
As every one of us sometimes learns,
And many a failure turns about
When he might have won had he stuck it out;
Don't give up though the pace seems slow—
You may succeed with another blow,
Success is failure turned inside out—
The silver tint of the clouds of doubt,
And you never can tell how close you are,
It may be near when it seems so far;
So stick to the fight when you're hardest hit—
It's when things seem worst that you must not quit.
~ Author Unknown
- Love, Elexis (June 3, 2009)
Please tell her that I am thinking of her and that I love her. She is such a strong person Shan, she will make it through this and you know she can. She is such an amazing person and you are so much like her. You both are so strong and I admire both of you for that. - JennyJenn (Jennifer Faillers; June 3, 2009)
When you're at the end of you rope, tie a knot and hang on! - Ali (June 3, 2009)
Remind her how strong her daughter is as that may be what she needs to know to put her worries at rest! And make sure your mom knows what a kick a-- job she did raising you!! Her life and spirit will live on in this world through you! - Dia (June 3, 2009)
I will be sure to say a prayer for her. I have a good feeling this will work. For all of what I have heard she's being really strong for doing all this to make something work. - Andy (June 3, 2009)
To your mom, I'd like to say that the life is great even though it is a b-----. So please, Patricia, put a smile on your face despite the pain and overpower that disease; it will be tough but you will come out on top regardless. - Julia (June 3, 2009)
Hello Patricia, my name is Sarah and I'm a really good friend of your daughter. I've had the both of you in my thoughts and prayers a lot lately...I just want to remind you of how blessed you are to have a daughter that loves and cares about you the way Shannon does. She is stunning in every light and ever so abundantly gifted. Her love for you is so powerful that I'm sitting here with tears rolling down my face. I can only imagine how the two of you are feeling right now… I know that you have a scary procedure awaiting you, but do not be afraid. You are a strong woman; I know this because I see this dominant quality in Shannon everyday. She must have gotten it somewhere! I can only hope that she's been as inspiring to you as she has been for me. You have sooo much to live for Patricia! This is just a speed bump, and nothing more so long as you decide to keep it that way. I truly believe that everything happens for a reason but I do realize as well that there are times when we just have no control over a given situation. But this is NOT one of those times. The human spirit is so much stronger than anybody gives it credit for. YOU are so much stronger than you think. You just have to know that you will be okay and believe that there is more for you in this life. Because there is always something more, and always, always, always something better. You WILL get better, you just have too much to look forward to. You have yet to see the depths of all your daughters many talents. If you ever feel like giving up, just remember why you held on for so long in the first place. I look forward to the day that I have the honor of meeting the woman who helped to shape the bright, caring, inspiring, beautiful girl that I'm so blessed to be able to call one of my best friends. I will continue to pray for you, although I do not think that you will need it. Best of luck! - Sarah Scott (June 3, 2009)
Pat I can't tell you how proud of you I am. I know you have your doubts about this proceedure but with the love and encouragement of all the people who love you, including me, I know that the Lord will do wonderful things for you. Bill, what a blessing you are to Pat; you are the reason that she does what she does, along with the love she has for your children. I'm so sorry that I can't come out there and help, but I can do things for her and you to help out here. Give hugs and kisses to each other from me. I love you both and look forward to seeing the both of you again. - Shawna (June 2, 2009)
From daughter Shannon’s friends:
Patricia, I am a good friend of Shannon's, and I just wanted to send you some well wishes in this time of need. I know we've never had the chance to talk at length, but you are in my prayers, and I hope that you have a safe and speedy recovery from your procedure. I wish you all the best. - Sincerely, Mike (May 30, 2009)
Mom, Hang in there, You've got a lot of people that love you a whole lot! You’re a very strong woman and you can do this. Before you go in just absorb all of the love around you and know they're going to take care of you! I'll be praying for you guys!!! - Love, Will (May 30, 2009)
Patricia, Life sometimes presents us with opportunities that we do not know how to handle. An adaptable attitude means being open to any new challenge or changing situation, regardless of your background, and refusing to place preconceived judgments on it. Being adaptable can lead to wonderful things; such as new skills or better relationships. You will grow and become more self-confident. You may not always know where a new life situation will lead, but if you approach it with a positive attitude and give it your best effort, you will always come out ahead. Be well... - Love, Ryan (May 30, 2009)
Tell your mom she is admired for the beautiful daughter and friend she has raised and that she is in my thoughts for a miracle to be graced upon her and hope she returns to health as soon as possible! - Ashley (May 30, 2009)
I am truly sorry for every thing i hope the best wishes to your mom and you, stay strong. I love you. - Courtnie (May 30, 2009)
Patricia, My name is Frank. You have a wonderful daughter who I have had the privilege to get to know over the last few years. She informed some of us of your situation and I wanted you to know that you and Shannon are in my thoughts and prayers. Place your faith in God and no matter what happens you will be in his arms. - Frank (May 30, 2009)
My thoughts go out to your mom and family. I am going through a very similar situation right now. My mother is in the hospital battling leukemia. It has been a very rocky battle, but we have been there as a support system for her through the whole ordeal. Keep your heads up and make sure to encourage your mom to keep fighting! - Jeremy (May 30, 2009)
I am sorry to hear about your mom, I hope everything goes in her favor. Patricia, you are in my prayers! Just think positive. If you ever need anything or someone to talk to I am always here. - Jamie (May 30, 2009)
Hi there Shannon, you probably don’t remember me cause its been a long time, but I just wanted to tell you to tell your mom that she will be in my thoughts and prayers…and just to be strong. I will be praying for all of you. - Melissa (May 30, 2009)
Patricia and Shannon, Live and do EVERYTHING to the fullest so that you never have any regrets. You will never struggle with the "what if's or the I wish I would have" Realize that life is a precious thing and be thankful for the loved ones you have. Be strong and take comfort in knowing you are never given more than you can handle. Love you and my thoughts are with you both. - xoxo Jenell (May 30, 2009)
Know that people are praying for you! Your daughter loves you sooo much and will be by your side. Life is only precious if you cherish the people around you and tell them that you love them every chance you get. Believe that you will pull through this procedure to see another day and to be able to see the faces of those that you love. Believe in what you believe in with all your heart. Don't be afraid, just pray and rest your mind. Good luck and God bless! - <3 HoppEr (May 30, 2009)
I have been thinking of your Mom often since we talked. I'm praying for you and her to both be granted the relief you deserve, whatever form it comes in. Don't be afraid, just embrace the situation with as much love and hope as you can. Actually, try to embrace it with about 10x that because it's time for her to win this battle, we won't take no for an answer, right? Right! - Keesha (May 30, 2009)