A few more photos of early summer in Seattle

• Caleb is winding up his month long visit to Seattle.  As I’ve said before, he’s been a huge help and we are very grateful to him of all he has done.  He’s kindly left us with a few more photos which help to documement these last few days.

(Amelia and Isabel at Snoqualmie Falls)

(Kayaking on Lake Union, headed towards UWMC)

 

 

(Keeping up on homework, even at the the hospital.)

(Photo of UWMC, and Husky Stadium, from Queen Anne Neighborhood,)

 

 

Day +12: Resting

(from Lisa)

Hi Everybody,

• Things are fine here — the tests done over the past few days to check for blood clots, impaired heart function, and fluid in the lungs indicate that all is well.  It does, however, seem as though Roger has been in a bit of a trough for the past few days.  Dealing with the range of side effects for such a long stretch has made him tired.  Dilaudid, which Roger still self-administers, does help somewhat with pain relief, but the bad dreams it causes are disconcerting for both of us.    
• Your support and the thought that engraftment (and therefore relief from the worst of the pain) may be just a week or two away are keeping us positive.  
• The weather continues to be spectacular, and provided a magnificent conclusion to the girls’ 5 days of kayaking, rowing, and sailing on Lake Union.  Today (Saturday) Caleb and Connie took the girls for a day trip to Snoqualimie Falls, just outside of Seattle.  On Monday, the girls will return to their Hutch School summer camp program.

Day +9: Holding Steady

From Lisa:

Hi Everybody,  

• Managing side effects has continued to be a challenge, but Roger is more comfortable today.  Since we last wrote, he’s had a couple of red blood cell transfusions and one platelet transfusion (with another on the horizon). These boosts of blood and platelets will continue until the engraftment occurs and his new system becomes self-sustaining. 
• Because the morphine made Roger quite itchy (as though he had bugs crawling on him), he’s switched to Dilaudid for pain relief.  It occasionally feels as though we’re just swapping the side effects of one drug for those of another, but Roger seems more satisfied with Dilaudid at the moment.  
• Despite the mucositis and nausea, Roger is trying to reduce modestly the number of meds he gets via the Hickman line and to take their equivalent in pill form.   Although we know it will be some time before he can be released to come home, we both feel more independent, and therefore better psychologically, when his IV pole is not groaning with 8 (or more) bags of meds and fluids.  There may still be days coming when he cannot swallow the small mountain of pills he faces a couple of times a day.  But every day he keeps swallowing, we treat as a victory. 
• One other issue has been a significant rise in Roger’s blood pressure, apparently due to the cyclosporine that he is taking to prevent future graft vs. host disease.  The team is still experimenting with various blood pressure meds to find the optimal mix to control the newly elevated BP.
• The fabulous sunshine we’ve been enjoying for some time is still with us, so the girls are having a blast in their kayaking/rowing/sailing camp this week.   We’ll post some of Caleb’s photos of their fun later today.
• We feel very fortunate to have such a supportive family and group of friends.   Thank you for helping us through this.  Roger will write soon.

Day 6 Update

• It’s Sunday evening Seattle time, six days since I got my new cells.  At this point in the transplant process–with my old immune system demolished, and the graft (transplant) of the new stem cells infused but not yet engrafted–no news is good news.  The last few days have not been a picnic, but the doctors and nurses all seem pleased that everything is going according to plan.  
• It’s still far too early for there to be any early signs of engraftment, so all we can do is wait, trying to be patient, for engraftment.  We will know that engraftment is occurring when both my white blood cell and absolute neutrophil counts start to rise.  Both numbers (which indicate infection fighting capacity) have been at zero since June 18.
• My biggest challenge continues to be the mucositis, which makes it very hard to swallow, chew, etc.  I’ve been using morphine to control the worst of the pain, but apparently it’s not possible to eliminate the discomfort entirely.
• I am grateful that I continue to be able to drink (ice water provides great temporary relief to my mouth) and to consume various soft foods–soggy cereal, some fruit, shakes made with milk and Carnation Instant Breakfast mix, yoghurt, chicken noodle soup, etc.  It’s not a very glamorous diet, but so far I’ve been able to avoid having to use the TPN (total patient nutrition–IV bags of sugars and lipids) which can be “fed” to me via my Hickman line.
• We had one short-lived moment of concern (no doubt the first of more to come) a few days ago when I got a mild fever.  Even mild fevers in an immuno-suppressed patient can indicate the start of big problems.  The team boosted my antibiotics, ran various blood cultures, and the fever soon passed.  Also, my blood pressure is up, likely from the cyclosporine I’m receiving, which helps to prevent graft vs. host disease.  So I’ve had to start taking a BP medication as well.
• All of the morphine I’m getting means that the days pass in a dozy blur.  With Lisa’s help, I’m still walking about 1.5 miles in the hallways each day.  My mom has come to Seattle for a visit, and so she too is learning the finer points of walking the halls (which windows have the best views, who among my fellow patients are talkative, etc.).  Caleb and the girls also visit daily.  I’m lucky to have the company.
• The nights also pass in a dozy blur, made a little less pleasant by all the fluids that are going into me via the Hickman line (lots of trips to the bathroom).  My kidneys are definitely having to work overtime.  Despite the kidney overtime, I have gained a striking amount of fluid weight:  my normal weight is about 200 pounds; this morning I weighed in at 217.  The doctors assure me that this situation is only temporary. 
• We’ve continued to have great seasonable weather in Seattle, and the views of Rainier from my window are spectacular.  The girls will spend this week in a kayaking/rowing/sailing camp on Lake Union (a 5 min. walk from our apt.) before resuming day camp at the Hutch School.   

Managing Mucositis–three days post transplant

• (Update from Lisa)  Roger’s mucositis has worsened since we last wrote.  At first, he says, it felt as though he had scalded his mouth on a piece of hot pizza.  But then the burning sensation did not pass and is now spreading down his throat and into his esophagus.  
•  The docs initially offered a “magic mouthwash” to numb his mouth, but this quickly proved to be inadequate for the task at hand.  So the med team moved to IV pain relief.  Roger now gets morphine (via a patient-controlled analgelsic “PCA” pump) to take the edge off.   The PCA pump lets him release a small dose of morphine as often as every six minutes round the clock.  The effect is better than either 1) needing to call the nurse for pain relief multiple times per hr, or 2) getting a continuous infusion of morphine, which can make patients somewhat dopey and prevents them from controlling their pain management.  (Sucking on ice chips and drinking ice water also seems to help, at least temporarily)
• The nursing staff continues to impress us with their commitment and professionalism.  The individual nurses on this floor typically have no more than two or three patients under their care, and they are really able to focus on the needs of the patients.
• In short, although he feels lousy, Roger is still getting up out of bed and walking the halls (a bit more slowly each day), and making a big effort to continue swallowing liquid nutrition (yoghurt, soup, shakes, etc.) and thereby avoid the threatened tube feeding for another day).  He’s hanging in there, and we are grateful nothing unexpected is occurring.  (Mucositis is very common after TBI.)
• Your messages continue to be a tremendous source of strength.  We are grateful for your support.

Some recent photos

• Of all the links I’ve posted here, the most popular was to a previous edition of the Hutch School newsletter.  There’s a new issue out, with several appearances/contributions by the girls
• Also, as I’ve previously mentioned, my brother Caleb has been with us since June 1.  On top of the tremendous help he has provided, he’s also taken some great pictures, which help give a fuller sense of how things have been going the past few weeks.  (See calebkenna.com for a selection of his professional work.)  Thanks, Caleb.
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Stem cells infused, and the waiting begins

• (Update from Lisa)  Roger got two units of umbilical cord stem cells late in the day on June 16.  The process, which was similar to a blood transfusion, took less than two hours.  Just before the stem cell infusion, he had a heavy dose of Benedryl to control nausea, but the combination of Benedryl and the preservative Dimethyl sulfoxide (DMSO), which prevents the stem cells from dying when they are frozen for storage, seemed to cause an unexpected reaction (spiking blood pressure, low heart rate, and a range of other challenges).  The attending oncologist and nurse managed all of this as best as they could, but the process and long night that followed was rough on Roger.  He’s feeling much better at this point (mid-day on Tuesday), but still pretty wobbly.
• The docs say they’ll focus their efforts in the days ahead on managing side-effects and quashing any infections that may develop before the stem cells engraft and start to build a new immune system.   
• We’re so grateful for your notes of support and positive thoughts.  Thank you for all of your help.

Total Body Irradiation

• It’s Saturday evening in Seattle.  I’m three-quarters of the way through my course of total body irradiation (TBI) , which has been a memorable, and unfun, experience.  Since Thursday, my days have revolved around twice daily trips (morning and evening) to the basement of the UWMC center, where the radiation treatment facility is located.  The process is not painful, but involves some stress (voluntarily subjecting myself to repeated doses of radiation therapy has involved a bit of a mental adjustment), and I’m starting now to feel the after-effects of the radiation.
• The actual process of getting the TBI involves sitting on, and in, a strange looking contraption with a bicycle seat and handlebars which is meant to hold my body still and precisely angled towards the accelerator which then zaps me with four five-minute doses of photon rays (two to my front side and two to my back).  The setting for this process is a basement room with an 18 inch thick door.  Given the toxicity of the therapy being administered, the technicians who run things need to be out of the room, but can communicate with me via an intercom and keep an eye on things with a closed-circuit TV.
• The technicians have repeatedly urged me to listen to music from their motley selection of CDs during the TBI.  I have mostly demurred, preferring instead to try to get in a zone by listening to the clicking buzz of the photon beam from the accelerator, or mentally escaping by replaying certain familiar golf courses in my mind (Peshawar, Mbabane Club, Royal Swazi, Mhlambanyatsi Forest Club, the Neshobe, and Ravenwood).  This afternoon, the techs again urged me to try listening to music, so I went with “Sergeant Pepper’s Lonely Hearts Club Band.”  I’m sure I will never again listen in quite the same way to “With a Little Help From My Friends.”
• Since I’m getting the TBI in fractionated doses (i.e., not all at once), the toxicity of the individual doses is not great.  The cumulative effect is another matter.  I’ve been feeling a strangely dry mouth and throat, some new taste changes, stomach upset and loss of appetite, and an increasingly crushing fatique.  Nausea can also be pretty common, but so far the medications Zofran and Ativan seem to be holding my nausea at bay.
• The net effect of the TBI–which was proceeded, as you may recall, by three days of chemo–will be that by Monday, June 16, my marrow will have been “conditioned” (if we’re using the euphemism; ablated, if we’re using the term of art; destroyed, if we are speaking plainly), and I’ll be ready to receive my new stem cells.  No word yet on what time of day on Monday this will occur, but as with most transplant patients, I’m looking forward to the event (my new birthday, in transplant lingo) with considerable anticipation.
• I’ve passed most of the time lately dozing (during the day), sleeping (at night), and sitting up occasionally for various doctors, nurses, and physicians assistants to perform a multitude of checks.  And, of course, I do the twice daily marches to and from the TBI in the basement.  It’s not much fun, but it all seems to be going according to plan, with no surprises, and for this I am grateful.  Lisa is with me here at the hospital (including through the night).  Caleb and the girls also visit during the day.  I wish I were better company.
• The U.S. Open at Torrey Pines has also provided some helpful diversions.  Tiger’s heroics on Friday and Saturday afternoons have been typically amazing.  I’m hoping that the only Sunday drama that I experience will be vicariously through the golf telecast.

Here we go

• It’s Monday evening in Seattle, the skies are clearing after a long rainy spell, and I’m at the University of Washington Medical Center for my second day of “conditioning” for the transplant.  I’m on track to get my new stem cells on Monday, June 16.
• Last Friday, I got word that the coronavirus, which had caused the recent delay, had cleared from my system (good news), but that, at a molecular level, there are clear indications that the bcr/abl mutation, which causes my leukemia, was starting to increase.  (Not such good news:  The Hyper CVAD induction chemo that I received in April and May did a good job of bringing the bcr/abl mutation down to very low levels, but did not make it undetectable, which would have been the optimum result.  Unfortunately, the bcr/abl levels are already starting to creep up from the low point they’d hit during the Hyper CVAD chemo–a likely indicator of the aggressive nature of the leukemia I’ve got–so the doctors here were eager to get me back on the transplant schedule.)
• Yesterday, I got the first part of my conditioning (fludarabine and micafungin) at the SCCA clinic on an out-patient basis.  This morning I checked back into the familiar confines of the 7th floor transplant ward at the hospital.  I’ve got a south facing room with a good view of the Montlake Cut (which connects Lakes Washington and Union).  Once the clouds lift, I think I should also have a good view of Mt. Rainier.  I received a big dose of Cytoxan today and will get another tomorrow.  Then a rest day, followed by four days of total body irradiation (TBI).  And then, next Monday, the new stem cells…
• I’m still feeling pretty good.  Lisa and I walked the couple of miles to the hospital this morning.  Even the rain on my face felt good–particularly since I won’t be able to feel that again for a month or so.  I expect that I’ll start to drag soon from the cumulative effects of the chemo and TBI.  Serious fatigue and mucositis seem to be pretty sure bets, and there are a raft of other possible complications (particularly viral, bacterial, and fungal infections) that the team here will also be focused on preventing or managing.
• My brother Caleb has been here for about a week now.  The girls, as usual, find him much cooler than their mom or dad.  Mimi helped Caleb make a super stir-fry for supper last night.  It was also great that Natasha, Caleb’s wife, was able to fly out to Seattle for the weekend.  For the first time since we arrived in mid-March, we’ve had a string of rainy days (more typical has been occasional showers, overcast skies, with the sun breaking through every so often).  The rain didn’t slow us down though.  We saw the girls’ drama class productions at the Hutch School (Mimi’s group did a variety show, and Iszy’s crew put on their interpretation of the Dr. Seuss classic, “The Lorax”).  We also visited the Seattle Public Library system’s Central Library, which is a pretty remarkable building; ate some excellent doughnuts (and bought some compensatory fruits and vegetables) at Pike Place Market; did some fun walks and visits to a few of the great parks here; and shared some fine meals.  
• It’s lately been an occasional challenge for me not to get bogged down in the anxiety, worry, and second-guessing that can try to dominate my thoughts, but times like this past weekend are the best antidote to such troubles.  ”Don’t count the days, but rather make the days count.”  So goes one of the many bits of received wisdom that have helped me with this process.  Good advice, but–as with many such recommendations–easy to say, but harder to do.
• I am struck by the necessary commitment of this process.  Though I’ve been aiming for the transplant for the past 4 months, the various delays and hurdles that have cropped up have in some ways distracted me from the absolute commitment that is required for the task ahead.  Now I feel very much poised at the top of a big drop.  (Greg’s comment on my last post was very apt.)  Having started the chemo, and soon the radiation, which will combine to wipe out my marrow–and, I hope, the lingering leukemia–there is definitely no turning back.
• The medical team here continues to inspire confidence and hope.  The doctors have been very responsive to our many questions (including e-mails that I sent them late last night), and we feel that we are in the best place we could be, given the circumstances.
• I feel strengthened also by the magnificent support from family and friends.  I’d like to write or call lots of you personally and will try to do that over the next few days.  Finally, at Lisa’s request, I’ve not made much mention of her in this journal so far.   But I’m sure it will come as no surprise that she is going above and beyond the vows we made back in 1991 (“for better, for worse… in sickness or in health, to love and to cherish…”).
• Here we go.

Delayed by a Cold Virus

• So, all systems were go until last Friday afternoon when I felt the onset of some very mild hay fever or cold symptoms.  It was not something that would normally be worth noting–particularly since there’s now lots of pollen in the air here now–but I mentioned it to the nurse, she immediately took a sample to test me for a range of cold and flu viruses, and the results came back this morning positive for a coronavirus, one variety of which causes the common cold.  Ugh.
• What this means is that the conditioning chemo and radiation for my transplant is temporarily on hold.  By Friday, after another virus test, we may have a better sense of how much of a delay to expect.  If things clear up, I may be able to get started next week.
• At this point, with my leukemia still controlled by the last two months of chemo and meds, it’s better to delay the transplant so that I can clear this cold.  Unlike some other viruses (e.g., influenza), which can really run amok in immuno-suppressed transplant patients, there’s not lots of data on how serious a risk it is to go to transplant with a coronavirus.  Still, the doctors say that it’s prudent to wait a bit to see if I can get rid of it.
• The delay is, of course, frustrating, given how much I have been anticipating the transplant, and how long we’ve been waiting already.  But it also means that I can enjoy another week of quasi-normal life.  My brother’s visiting from Vermont again, and the girls have an end-of-year theatrical performance at school later in the week.  We’ll make good use of the time.
• I continue to be strengthened by all of your support.  Thank you.