Last Blast

Joe's Last Blast was read today by good friend Jeff Rubin at Joe's Celebration of Life Ceremony at Faith United Methodist Church. Thank you, everyone, who came to remember Joe. -- Jan and family
******************************************

This is not the final blast I hoped to write.

My plan was more like this: When I had been in remission for a few years, I would wrap up this writing project with some carefully crafted post about lessons learned, how going through these troubles had made me a better person, blah blah blah. It would have been witty and full of insight and written while on vacation with family in New England. Maybe it would become a book and I would go on tour.

Instead, I have to come up with something much sooner than planned, and I have to write from a very different place. I'm afraid it's going to fall short of my earlier aspirations for quality.

I am grateful for what I learned about myself and about living and about how much love and support that was in the hearts of so many who know me and my family. I do feel that the lessons would have been just as effective without this particular ending, so my gratitude is tempered.

I am happy that my writing found an audience that found it valuable. Many mentioned how much my writing about my experience with leukemia helped them or changed them, and it feels good to know I was able to do that.

Some mentioned that they didn't know I had such a great sense of humor. That hurt a little, since I always thought I was funny.

The many messages I have received all along and especially during the final phase of my illness make it clear we affect many more lives than we know. Some of it is intentional — teaching, coaching, parenting, working — but much of it is incidental, based on how we live.

I can't write a last blast without thanking the many friends, both recent and from way back, whose support has made these hard months since January 2011 much easier for me and my entire family. My family and I are so thankful.

And I am thankful to have such a supportive family, from the sibling visits (and stem cells!) to my parents practically taking up residence in Illinois as needed. And to have seen my two sons develop for an extra couple of years, and to see in both of them the ability to succeed at whatever they put their minds to.

And above all I am grateful that Jan overlooked the clumsiness of my marriage proposal, and the substitution of a treadmill for an engagement ring, and accepted me for what turned out to be 26-plus years of a rich marriage. I could not have found a better match: common interests, shared goals, different strengths, and unconditional love. She definitely got the short end of the "in sickness and in health" clause, but she has handled it beautifully.

I have noticed the coincidence between how long we've been married — 26-plus years — and the length of a marathon, an event that has percolated through our life as a couple and, in the last few years, has given Team J a lot of time working closely together, a source of joy.

26-plus... as many years as a marathon has miles, though it felt as easy as a 5K. If only we had been working on a 50-miler.

I don't know what else to say.

Enjoy the blueberries.

Rest in Peace, Joe Seeley

Joe's 21-month fight against leukemia ended Saturday night. He was surrounded by our sons, his parents, Paul's best friend Andy, and me when he passed peacefully. Last Friday, Joe had moved into hospice care at home, after receiving final transfusions at Carle, so we knew we didn't have much time left with him. Each day this week was a treasured gift.

A ceremony to celebrate Joe's life will take place on Saturday, November 17, at 10:00 a.m. at Faith United Methodist Church on Prospect Ave in Champaign. We hope many of you can join us. Joe has written a final blog entry that we will read at that ceremony and then post on Joe's Blasts.

To carry on Joe's long-time commitment to youth soccer in Champaign-Urbana, we have established the Joe Seeley Scholarship Fund with the Illinois Futbol Club (formerly LISC). In lieu of flowers, donations can be made to "Illinois FC" with "Joe Seeley Scholarship Fund" on the memo line of the check, and checks can be mailed to the following address:

Illinois FC
Attn: Joe Seeley Scholarship Fund
2310 N. Willow Rd.
Urbana, IL 61802

We are so grateful to all of you who have faithfully followed Joe's blog during his journey. Your comments about Joe's posts meant a great deal to him, and buoyed him during his toughest times.

We are also grateful to Joe's doctors at the University of Chicago Medical Center and for the care he received recently at Carle.

Lastly, we cannot thank enough everyone who has supported Joe and us during his illness. Your many acts of kindness helped us more than you may realize. ---

Jan Seeley (the shorter half of "Team J")
= = =

Liquid Diet

A flap of gum has grown over the lower wisdom teeth on each side of my mouth, so I cannot chew. (My previous statement that my gums were swollen was incorrect.) After consulting with oral surgeons and my other doctors, we have decided there is no good solution under my circumstances, or at least no solution better than living with it.


So far, I have been relying heavily on thinned hot cereals, pureed bean soups, banana ice cream shakes, yogurt and fruit smoothies, and a commercial nutritional drink with a lot of calories, protein, and fat. Though I'm generally in favor of real food, the commercial drink is very convenient and very chocolatey.

I have been feeling sorry for myself about needing to get all my nutrition in liquid form from now on. I miss eating solid food a lot.

Then I saw that people with broken jaws face the same problem. This gave me hope that I could find a tasty variety of nutritional drink/smoothie/shake recipes.

Some of what I found sounded terrible. For example: pizza, hamburgers, Chinese food, or Mexican food, plus some extra liquid, put in a blender and then strained. Also, baby food. I have been having problems with nausea and vomiting, and I get queasy just thinking about these. But if I get desperately bored with what I'm doing, I might have to give them a try.

I did learn about some promising additions like nut butters, hemp and flax seeds, and tofu. Those are probably where I'm going next to boost the nutrition of what I'm doing. Vegetable juice, too.

If you have some clever ideas for drinkable, nutritious, and tasty foods, please pass them along.

In Between

I have been home just over a week, since the Wednesday before Labor Day. It's so much better than being in the hospital.

I have not been in a writing mood. No, that's not quite right. I have wanted to write — letters to family; blasts to keep telling the story. But I have serious writer's block.

= = =

All of my siblings, plus my brother's wife, Kate, came to town the day before I came home and stayed as long as their schedules allowed. They brought some pictures from our childhood to help us reminisce, which generated some smiles. We got in a live game of Scrabble with a few of the regulars from our family gatherings in New England, which was also fun, even if I did come in third of four, and Kate won as usual.

Unlike the last sibling infusion in early July, this visit was a good-bye, so there was a lot more crying.

= = =

This is a very strange time, the days after the last day on which I could see many more years forward in this life, no matter how unlikely.

I know people have enjoyed and admired my positive outlook, humor, and willingness to share what's going on, often in great detail. About all I'm willing to share right now is that I'm not feeling much like that person these days.

That, and my gums have recently swollen to the point that I need to take in liquid foods only. We're trying to see if there's something short of extracting teeth that we can do to ease the problem. Extracting teeth doesn't feel right for someone where I am in life — it would mean going back into the hospital, the wounds would probably never heal because of my immune system, it would open up additional avenues for infection. At this point, I'm aiming for the best possible days, not as many days as possible.

= = =

The response to my previous blast, in which I laid out the path as we know it, has been humbling and comforting. Thank you.

No Happy Ending

The biopsy results trickled in over the course of Thursday.

First result: Only 2% blasts! That sounded really good, since I had been at 20%. We were warned that it might not be all that good, especially if the marrow was essentially empty (hypocellular).

Second result: Less hypocellular than before! Lots of immature cells. Maybe things are moving in the right direction, depending on where those immature cells are headed.

Third result: Almost all of those immature cells carry the deletion-7 abnormality that marks my leukemia. We have lost.

Fourth result: Due to some miscommunication between my local and Chicago doctors, we hang a shred of hope on the belief that the deletion-7 number is premature. But it isn't.

If we hadn't done the biopsy, we wouldn't know it was over and we would be hoping for a highly unlikely five-day break in the fevers at just the right time to get in another (fruitless) cycle of the clinical trial.

Instead, we get to plan my final days, to the extent possible, and think of ways to celebrate my life. Not everyone gets to do that.

Once we figure out the hospice arrangements, I'll leave the hospital and head home. I can keep taking my medications and going in for transfusions, until a fever sets in. If my time in the hospital is any guide, that might not take long. The fever precludes transfusions, and I won't be coming back into the hospital for IV antibiotics to try to get it under control.

My parents are already in town and have been since I re-entered the hospital. My younger brother and his wife had already been planning to visit this week, so they'll be here. My sisters are coming, too. The more family, the better.

We'll do our best to make me comfortable by controlling the fever and taking various narcotics. At some point the infections or a stroke or some other failure will be the end. I am strongly hoping it's in my sleep, without drama or trauma. We've had enough of that.

I have mood swings: acceptance, melancholy, peace, grief, gratitude. They come and go, sometimes within just a few minutes of each other. No anger.

Acceptance is usually highest in the morning, for some reason. Maybe I've been having those pleasant dreams in which I'm healthy, so I'm more open to the it's-all-part-of-life and we-all-get-here-eventually outlook when I first wake up, and less so as the day goes on and I have more time to think about the sadder sides of my current reality.

Now I Can Talk About It

Still in the hospital. The fever that landed me back in the hospital has been under control for the day. So that's good.

But we're also dealing with several varieties of bad.

For this hospitalization, I have been designated a fall risk. I don't know how they determined that, but I don't blame them for being cautious on my behalf. As a fall risk, I have a bed alarm that would go off if I got out of bed to use the bathroom without assistance, or tried to make a break for it. I also wear yellow socks and a yellow "FALL RISK" wristband, in case I disable the alarm and make a break for it. When Jan is here, they turn the alarm off so that she can get in bed with me. Usually, she sits at the foot of the bed so she can look at me. Sometimes, she curls up there and takes a nap.

No day can be all bad when I have this
gorgeous woman on my bed.

I have trouble keeping food down. I'm taking Marinol to enhance my appetite and Zofran to manage nausea, but the vomiting comes on so unexpectedly and without any preceding nausea, that we can't time the Zofran to be reliably ahead of it. Besides being unpleasant, regularly throwing up interferes with my nutrition, which further weakens me.

Medically, the worst of the bads has to do with my vulnerability to infection. I was scheduled to start cycle 2 of the trial this coming Monday, but it's too soon to stop the intravenous drugs that are addressing the undiagnosed infection(s) behind the recent fever. So maybe the week after, if no fevers return. And the fevers have to stay away during the week of treatment. And with my immune system in its current state, that's a shaky proposition.

More bads, psychologically, are the unknown length of the treatment and the low odds of success. My previous treatments, no matter how unpleasant the side effects, always had relatively short durations (maybe a couple of weeks) and the confidence of my medical team. It's a lot easier to tolerate distress when you can count the days. This treatment could take months to show signs of success, and more often than not, it doesn't.

All of the above has caused us to step up the pace of learning about palliative care, which is what you do to remain as comfortable as possible once you decide to stop treating whatever is killing you. Which, unfortunately, is a decision we may have to make soon, especially if I can't shake the fevers or if some other complication shows up, like one of those killer fungi I had each of the previous rounds of treatment — there won't be any emergency surgeries this time. I am having a bone marrow biopsy early next week to try to gather additional information. It won't make the decision about continuing or discontinuing treatment easier, but it may make it clearer.

In the meantime, my plan is to stay in the hospital receiving IV antibiotics for as many days as possible, with a discharge right before my next chance at starting cycle 2. It's not all bad. Jan spends a lot of time here. We reminisce, we cry, we just hang out without saying anything. Best part of my day.

In

Due to a fever on Tuesday night.


I don't want to talk about it.

Out

I was released from the hospital Friday evening, after managing to keep my temperature (just) under 100 for a couple of days.

I still spent most of Sunday at the local hospital getting transfusions, and most of Monday going up to Chicago and back, but at least I got to sleep in my own bed.

In addition to the comfort of being in my own bed, I also got to sleep with the windows open on some really great nights for sleeping: cool, light breeze, crickets and other night chirpers, a gentle rain one night. The hospital can't provide any of that.

Healthy Dreams

My Olympic fortnight has so far been filled with refillings of my tank: sometimes platelets, sometimes red blood cells, sometimes both. Last week, I received transfusions each day from Monday to Friday. That wasn't the plan, but scheduling problems kept turning what would have been a long day of transfusing into two only slightly shorter days. Fortunately for the sake of time, all but the Monday transfusions happened locally instead of in Chicago.

Ideally, I would only need transfusions every other day, and maybe even just three times a week. Ideally, I wouldn't need transfusions at all, but where we set our sights depends on where we are.

On Sunday, another planned long day of transfusions turned into what is now a hospitalization of three days and counting. Toward the end of the session, I started running a fever above the standard threshold of 100.5. That temperature means automatic admission when you are neutropenic and have as few white cells as I do, because an infection can easily get out of control.

After admission, I started getting an additional antibiotic, and we converted another medication that I had started having trouble swallowing from tablet form to intravenous. They also started testing for various infections: lungs, blood, urine. So far, nothing has turned up.

The hospitalization hasn't been bad. I'm at the local hospital, so it's easy for family to visit. Jake and Paul are back from their annual summer family visit to New England, and my parents are also in town, so there's plenty of family. And the nightly interruption schedule is more sleep-friendly than it is in Chicago.

There are usually two criteria for release from the hospital when you have been admitted for a neutropenic fever. The first is to be fever-free for 48 hours. I keep running up over 100 in the evening, so that 48-hour clock keeps resetting. The second is for the neutrophil count to get up to a level that offers some protection. It's been weeks since I had that many, and it will be weeks before I get that many again, if ever. Therefore, we're waiving that criterion, and I only need to meet the fever rule.

When I am not being transfused, and even when I am, I usually feel like sleeping. I wonder how much is the push from being anemic and otherwise quite unwell and how much is the attraction of being asleep. I don't remember most of my dreams, but the ones I do remember feature a me who is healthy. I'm running alone or with friends, on trails or on the track. I'm trying to figure out how to unlock the gas tank on a bizarre foreign car. I'm being shooed out of the kitchen as I forage during meal prep. It's a relief to not be sick, even if only for a few hours at a time.

I'll take those dreams as visions of the future and not just fever dreams.

Lentius, Infernus, Infirmus...

We have been enjoying hours and hours of Olympics. Seven channels!

At the moment, I am living a sad inversion of the Olympic motto: Slower! Lower! Weaker! I walk more slowly, my blood counts can't get any lower, and simple tasks (like taking a shower or climbing the stairs) leave me winded.

Unfortunately, the symptoms of progressing leukemia and the side effects of the clinical trial are hard to distinguish right now. So we can't tell if I'm benefitting or not. At some point in the next several weeks, we might see a turnaround in the blood counts. It would be great if it happened before the end of the Olympics, so that I could experience some Faster-Higher-Stronger of my own, with the right sound track on television. It would not take much.

Buying Green Bananas

I am three days into the five days of injections that begin the first 28-day cycle of the clinical trial. So far, so good.

The day before the trial started, I had an uplifting experience and a scare.

The uplifting experience was a Meeting for Worship with a concern for Healing held by the local Quakers (my religious community). Since I am in isolation, my family participated via Skype. We had some technical difficulties during the hour, but it was good to see all those familiar faces doing the Quaker silent worship thing on my behalf. I heard afterward that when the meeting was over and we had signed off, the gathered Quakers hung around saying nice things about me, some of which were relayed to me. It was like being eulogized while still alive, which seems more useful than the usual practice.

The scare was a fever that climbed as high as 99.7. If it had reached 100.5, I would have had to go the emergency room, and my participation in the trial would have been postponed until the fever was controlled. Fortunately, the fever went away as quickly as it appeared, and we were able to begin the trial on Monday.

Monday was a long day. It started with Jan and me leaving Champaign shortly after 5:00 in the morning so that we could get to the clinic in Chicago by 8:00. Jan's best friend Maggi flew in for a much-appreciated 24-hour visit, joining us at the clinic not long after we arrived. I had a blood test which confirmed that my counts continue to approach zero. I had another EKG. Then I was called back to a reclining chair — chair 18 — in the infusion therapy room, which is a large room with a lot of chairs separated from each other by curtains. There are a few private infusion rooms, some with beds, but I guess I didn't rate. I spent about eight hours in that chair, except for bathroom breaks.


We heard that it took a couple of hours to prepare the injection, and we expected the injection to take place around 10:00. This would allow for the eight hours of blood draws we agreed to in the consent form. It took about four hours for the injections to be delivered from the pharmacy, so we only had time for six hours of blood draws before the clinic closed, at the same time that I was receiving a bag of platelets and a bag of red blood.

Ouch! Times two!

A nap with Jan was one of the best parts of a long day in chair 18

After a final blood draw around 6:00 p.m., the three of us headed to the apartment Jan and I rented for the week and ordered dinner from a Mediterranean restaurant. It was wonderful to be able to spend the day with Maggi, especially for Jan.


Maggi left at 7:00 a.m. on Tuesday. We were back at the clinic at 8:00, scheduled for another bag of red blood and the second day of injections. I got chair 18 again. There was no order for blood, so it took a while for the blood to show up, and it again took several hours for the injections to arrive from the pharmacy. We left the clinic a little before 1:00. Leftovers for dinner, and then a lovely walk along the lakeshore around sunset.


Wednesday was easy. We arrived at 8:30 and were done around 10:00, again in chair 18. It didn't make the injections hurt any less, and they are pretty painful, but it's nice not to spend so much time in the clinic.


Thursday and Friday may be a little longer, depending on what transfusions I need and when, to get me through the weekend before I return to the clinic on Monday to visit my doctor. I will probably get more transfusions Monday, and the current plan is to have a line inserted into my arm to make it easier to draw and receive blood. 


If we're lucky, there will be more blood tests and transfusions in the coming weeks and months than the veins in my arms can handle. Having this procedure is an act of optimism, like buying green bananas.

All Together (Nuclear Family Version)

Jake arrived Tuesday, cutting short by a few weeks his planned stay in Cambridge, where he was working at Harvard with his Haverford thesis adviser. He may continue to work for his thesis adviser into the fall. Having Jake at home will be good for each of us, in different ways.

Paul will benefit from having his big brother around: someone to play tennis or kick a soccer ball with, and someone to talk to about things he isn't comfortable talking to his parents about. The talking could have happened by phone, but it's more likely to happen, and to happen more often, when they're under the same roof.

We will all benefit from having another adult around the house: an additional cook, an additional shopper, an additional driver, an additional listener.

Jake will benefit from being able to help at a time when we need help.

There is only so much friends and family can do when they are one or two thousand miles away. We know they wish they could do more and be around more. We wish so, too. Most of our extended family lives near Boston, and it would certainly be easier on everyone if we were not the Midwest outliers.

Tick Tock

The past week featured two trips to Chicago, two visits to the local cancer center for platelet transfusions, and a decision to bring our older son Jake home for the rest of the summer and the fall.

Monday

The Monday trip to Chicago, with Jan, had the usual blood work and a meeting with my doctor, now back from vacation. My blood counts continue to drop and are now at dangerously low levels across the board: red, white, and platelets.

The gist of my doctor's message was that most people in my position would choose to keep seeking treatment, but we should think hard about how I want to spend what is, statistically, not a lot of remaining time. How much of that time do I want to spend in Chicago, maybe in the hospital, maybe suffering painful battles with infections, and all for a less than likely positive outcome? Where do we want to draw the line? That is a very hard question to answer, and we have not yet done so.

Then a nurse brought in a consent form for participating in the clinical trial we had heard about earlier, which is the only treatment option that the leukemia team thinks has some chance of success for me.

The drug is SGI-110. The protocol doesn't sound so bad: an injection a day for five days, with frequent blood draws on the first and last days, and a bone marrow biopsy on the last day. Then three weeks at home, waiting and watching blood counts. Then we repeat the cycle if there is any sign that it's helping. The main potential side effects are not anything that I'm not already experiencing: lowered blood counts, feeling tired, high risk of life-threatening infections. The injections are done as an outpatient, so the main drawback for us is the disruption of being in Chicago for five straight days.

Since the alternative is waiting at home for some disease or infection to take advantage of my weakened immune system and do me in, we decided that the treatment falls on this side of the line we haven't drawn yet. It may or may not work, and the odds are not in my favor, but it's worth a shot. So we signed the forms. The nurse was unsure whether I would be able to start in one week or two — the timing depended on the length of time since my last dose of prednisone, and she didn't recall whether that gap needed to be one week or two.

That was a sad ride home from Chicago. We talked to my parents and to Mara. We decided to ask Jake to come home from his summer job at Harvard, and to delay the start of his graduate work at Berkeley so that he could be home this fall. No matter how this turns out, it will be better for all of us to be together.

Tuesday

On Tuesday, we talked by phone to the doctor running the clinical trial. That raised our spirits, as she recounted some of the success stories they have had. She didn't sugarcoat the odds, but she did second our opinion that there's little harm in trying. We also heard from the nurse coordinating the trial that we would be starting the first cycle next week (July 16), which was another boost to our spirits. We made arrangements to stay in Chicago for four nights at the same place we rented in January and February, when I was out of the hospital but needed to stay close.

Wednesday

On Wednesday, I told my supervisor at work that they should be prepared for me to stop working. I have been working about 50% time lately, mostly designing user interfaces for web and smartphone apps. It is enjoyable work, and it keeps my mind occupied in a good way. They were already planning to hire an additional person to keep up with anticipated extra work. Now they can conduct that search with a different perspective about their future needs.

I went to the local cancer center for a platelet transfusion. My platelets were at 11 on Monday, and the Chicago team felt I should get some more in preparation for my Thursday biopsy, part of the screening tests for the clinical trial.

At the end of the day, we learned that I could not start the clinical trial for another week, on July 23. The nurse thought I had stopped taking prednisone a week earlier than was the case. This was discouraging. The longer we wait, the more time the leukemia has to build, and the greater are the chances of an infection taking hold.

Thursday

A friend drove me up to Chicago for screening tests for the clinical trial: a couple of heart tests (MUGA and EKG), some blood work, and a bone marrow biopsy. We won't get any results from this biopsy. Some of the samples go to the drug company that is sponsoring the trial, and the rest get frozen at the Chicago clinic for future research.

The nurse practitioner who performed the biopsy gave me her professional opinion on the return of my leukemia: "This sucks." So true! She also prescribed an additional antibiotic and, at my request, some sleeping pills.

Friday

Another platelet transfusion at the local cancer center, accompanied by my son Paul. I don't get the same boost in platelet counts that most people get from a transfusion. So not only am I not producing enough platelets because of the leukemia, but I'm also losing the ones I do make or receive, for some unknown reason. 

The outward manifestation of my low platelet count is that my lower legs are densely covered with tiny red dots called petechiae. My low red blood cell count causes me to be more tired than I have been recently. My low white cell count causes me to worry about every sniffle or ache — is this the start of some killer infection?

= = =

Was the account above hard to read? That seems fair — it was hard to write.

It is not easy to be realistic and optimistic at the same time. Realistic, because we have to prepare for the worst. Optimistic, because a positive outlook correlates to better outcomes, and because hope feels better than despair. On the positive side: I have some symptoms of GVHD, indicating that my immune system might still have some useful fight left in it, if the new treatment can slow down the leukemia.

The odds are against me, but that has been true before. The last time the odds looked especially bad, late last fall, I was in a hospital bed in Chicago battling a deadly sinus infection and leukemia at the same time. This time, I get to be at home: grilling on the patio, watching the Tour de France and movies with my family, doing useful work, taking walks in the neighborhood, holding and being held by my wife. This is better.

Triple Sibling Infusion

We typically visit New England in the summer, shortly before school starts. Our parents and siblings all live in the Northeast, with almost all of them in the Boston area. The trip almost always includes time in New Hampshire, just as the blueberry season begins there. We thought we would be able to do it again this summer, though we expected it to involve driving instead of flying to accomodate my still-compromised immune system.

With my relapse, there's no way I should be getting that far away from my doctors or getting exposed to extra people, so I will be staying in Illinois for the first summer in a long, long time. Maybe even for the first time since moving to Illinois 25 years ago. Paul will fly to Boston, and Jake is already there for the summer, so they will have to be our representatives at the annual summer family gatherings.

Since I had to cancel my summer travel plans, and to help ease the shock and pain of learning my leukemia was back, all three of my siblings flew out for a long weekend of hanging out, cooking, and yard work. And blueberries.

Mara tames some tomatoes.

There are always plenty of weeds.
Karl and Lauren take some of them out.

There is a U-Pik farm not too far west of town. Last year was their last year of being officially open for business, but they still let you come and pick and pay on the honor system. There are lots of weeds, and the bushes have not been pruned, and it's a little sad. It was also just shy of 100 degrees and very humid. But the late afternoon light was beautiful, making the scene look like a painting of an Italian landscape. And, of course, there were blueberries! Writing the perfect metaphor about finding beauty and sweetness in a day's dying light, in a blueberry patch succumbing to weeds, is left as an exercise for the reader.

Karl and others picking...

Paul picked the most.

I did not pick, an extension of my doctor's orders to avoid yard work. I roamed the rows finding bushes that were relatively loaded. It has been so hot and dry for the last week and a half that the berries were smaller than expected. However, they pack the flavor of a larger, plumper berry into a smaller volume, so they should make a good pie.

Joe holds Paul's bucket while Paul takes the picture.

Mara flips Karl's famous pancakes, some of which got to be blueberry pancakes.

Karl makes bread cuts fruit. Later he made some of his famous
oatmeal bread.

Lauren works on a blueberry pie.

As expected, the pie turned out great. I should have worn a hat!
I forgot that I don't need much hair to have a bad hair day.

Hints of Sunshine

We went up to Chicago today to discuss potential paths forward.

All of the paths start the same way, getting off prednisone as quickly as possible without triggering a dangerous amount of GVHD. I started the weaning late last week, and I am starting to have a little skin rash at the current dose of alternating 20mg and 10mg daily. The rest of the week will be at 10mg, followed by a transition to 5mg daily. The current weaning schedule will have me completely off prednisone in a couple of weeks, subject to adjustment based on the amount of GVHD.

Taking the prednisone leash off my immune system could slow the progress of the leukemia, or maybe even start to reduce it, though I don't get the feeling that the latter outcome is likely.

Once I am no longer taking prednisone, and if the number of blasts in my marrow is still too high to make a donor lymphocyte infusion worthwhile, there are a couple of promising new chemotherapy protocols that might make sense for me to try. Both treatments involve outpatient visits to the clinic and were described as well tolerated (minimal side effects).

Like weaning myself off prednisone, the chemotherapy might be enough to give my new immune system the upper hand. 

If not, and as long as the chemo reduces the number of blasts in the marrow sufficiently, then we might try a donor lymphocyte infusion. A DLI is yet another way to tip the scales in favor of the immune system, again with the risk of triggering too much GVHD. When my sister donated stem cells, the team also collected lymphocytes and froze them, just in case we needed them at some point in the future. I guess it's good to know my medical team was more prepared for a relapse than I was.

Along with a rough plan, we got the following news:

• My platelet count did not fall between Thursday and today, which meant I did not need a transfusion.
• There are no blasts in my peripheral blood, which suggests that the blasts are not proliferating as rapidly as they might.

I'm also delighted that I don't need to pack a bag for another hospital stay in the immediate future. This is what passes for good news, under the circumstances. We'll take it.

Inside the Silver Lining, a Dark Cloud

On the outside, encouraging news. My skin rash was nearly totally under control, my muscle contractures were gone, and I was gaining weight. In other words, I was getting over the GVHD.

Inside that silver lining was a dark cloud. My 180-day biopsy preliminary results show that the leukemia has returned. (The other results that take longer won't change this conclusion. They will just provide additional information about the extent of the return.) This was not a surprise, given the recent downward trend in blood counts, but I didn't have to face it and cry about it until yesterday, because it wasn't confirmed.

The two events — GVHD goes away, leukemia comes back— are, I assume, linked. Given a choice, I'll take the GVHD, thank you.

Jan and I are going up to Chicago Monday to talk about next steps: maybe trying to trigger graft-vs-leukemia; maybe another transplant, perhaps with a different donor; maybe something else we haven't heard of previously.

After the first transplant, I was thinking "cured!"

After the second transplant and the clean report card at 100 days, I was of course hoping for long-term remission but mentally prepared to fight again in a few years, perhaps when treatments were more effective and less dangerous. Instead, we're back at it six months since I left the hospital and four months since I was able to come home.

These recent months of nearly normal life have brought me a lot of simple joy, and I am grateful for that. It's painful to think about merely going back into the hospital, let alone the other darker possibilities.

I was trying not to think of the elephant in the room, without success. But even if you manage to avoid thinking about the elephant in the room, it can still crush you.

Trying Not to Think of the Elephant in the Room

I had several tests on Monday: pulmonary function, blood counts, and a bone marrow biopsy.

My pulmonary function test results are very good. Volume, diffusion... all indicate that my lungs are doing well and that my blood is taking up oxygen as it should.

My blood counts are not so positive. My platelets continue their steady decline, and for the first time in months my white counts have also slipped below normal. The hemoglobin counts are fine, which is consistent with my pulmonary function results. The neutrophil count is good, providing decent infection protection. The low platelet numbers are not a surprise, since my legs are covered with tiny red dots and larger red spots, both signs that capillaries just below the surface of the skin are leaking.

Why are the counts dropping? We don't know. The last time I visited my doctor, she said she didn't know. My doctor is currently on vacation, so I was seeing an APN, and she wasn't inclined to make a guess. She did say that she didn't think sirolimus was a likely culprit, an earlier hypothesis, since it has been quite a while since I stopped taking it.

What other explanations are there? GVHD, though my symptoms have been receding. Or an autoimmune response that targets platelets, which is supported by positive tests for platelet antibodies. Or the return of leukemia.

I don't want to think about the last possibility, but I can't help it. It is not my doctor's style to hide bad news, but maybe she has chosen to spare me a disturbing suspicion until she has actual news to talk about. I'm disturbed anyway.

I would be on edge even without the negative blood counts, since I am waiting for biopsy results. The edge has been sharpened by the last few blood counts and the recent don't-know-what's-going-on stance of my caregivers.

I have another blood test tomorrow, and I may get preliminary biopsy results today or tomorrow. Depending on the results, I will either be tentatively relieved (while awaiting the more comprehensive results in early July) or forced to think about what I am unsuccessfully trying to not think about.

Blueberries

I started the day picking blueberries in the backyard. We have three small but mature bushes, which have been producing about a half cup a day for a couple of weeks now. Unlike last year, the birds are leaving the berries for us. The bushes would be more productive if properly pruned, but I've been otherwise occupied during the last couple of winter pruning windows. If I skip a day of harvesting, I bring in a cup and share them with Jan and Paul.

A half cup a day isn't enough to make a pie, but it's enough to make a classy upgrade to breakfast. I don't know that I could tell the difference in a blind taste test, but it seems like the berries I bring in from the backyard taste better than any other blueberries. I do know I enjoy them more

It's been fairly quiet on the medical front for the last several weeks. I continue to have little bit of rash and dry skin. The contractures (muscle and tendon pain) have been diminishing. I did call my doctor once, after a bloody stool, but it ended up being an isolated incident, and I didn't need to go up to Chicago for testing.

At my last appointment, my platelets were down from the previous visit, after a long stretch of climbing. Why? Who knows? My next appointment is Monday, and I'm hoping the platelets are on the way back up again.

Graduation

Older son Jake graduated from Haverford this past weekend. It was everything a graduation should be: beautiful weather, family, and a graduate who has found a passion to pursue and who got about as much out of the college experience as it is possible to get. Money well spent!

The medical, blog-related aspect to this event is that I got my doctor's permission to attend. Crowds are dangerous, but much of the activity was outdoors and I was able to surround myself with a lot of fresh air. My father flew out to Champaign so that we could drive to the Philadelphia area for the graduation, since plane travel is still off limits. (A hundred people in a sealed container for a couple of hours — not a good idea for people in my condition.)

Not much to report otherwise, medically. My blood counts from a week ago Monday were very good, with the platelets jumping nicely from 38 to 61 in a week. A large amount of rash, but that has since moved into and through an extraordinary amount of shedding, and currently all seems quiet on the GVHD front.

Not Quite Ready to Run

Last summer, I was training to run a 5K in the fall, and my training was on track for something in the neighborhood of 30 minutes. My leukemia, however, had other plans.

These days, I walk almost every day, but not very fast. Weakness is part of the slowness, but the main issue is neuropathy, or nerve damage. I have had some mild peripheral neuropathy since last spring, in my feet. It showed up a month or two after my first transplant, a slight numbness in my toes and forefeet. Neuropathy can be a delayed side effect of chemotherapy, and that probably explains mine. Last summer, my neuropathy was mild enough that it had no effect on my mobility.

During treatment leading up to my second transplant, which featured four rounds of chemotherapy, my neuropathy got noticeably worse. My feet were more numb than before, and a mild numbness extended past my ankles and partway up my lower legs.

I have received different answers from doctors about the future of the numbness. My doctor says it's unpredictable. Another doctor said it usually heals, but very slowly. A third said he's never encountered a leukemia survivor who complained about numb feet. I don't know whether this means that it eventually resolves, or that his patients have all been relatively sedentary people who don't care about numb feet, or that when you survive leukemia you just don't get that worked up about your feet being numb.

I am bothered by it, because it prevents me from running. There is the lack of perception, which makes for unsteady foot plants. Worse, I don't have full muscular control over my feet. My right foot, in particular, has recently started slapping down with each step, especially when I try to walk fast. I also can't raise my right forefoot past the 90 degree point, which makes it easy to stub my toes on flat surfaces.

This past Illinois Marathon weekend included a 5K on Friday night, and I entered it. My goal for the 5K was to break an hour, slightly faster than 20 minutes per mile. Walking with me were Mara, my father, and Jake. Once upon a time, I used to line up on the very front line of 5Ks and occasionally win them. This time, we started at the back. Not near the back, but at the very nobody-behind-us back. It's a different look.

And off we went. Step, slap, step, slap, passing a lot of people. We didn't time the first mile. The second mile was around 16 minutes. (Once upon a time, I would have already finished a 5K by the time 16 minutes had passed.)

With about a half mile to go, I was still feeling good. Step, slap, step, slap. I tried a little bit of jogging, about 20 yards. It felt good — easier than walking. After some more walking, another interval of jogging, cut short by a spectacular tumble as my droopy right foot caught the pavement and spilled me hard onto the concrete. 

An EMT who happened to be walking at my pace stopped to tend to me, and another walker offered some wipes to stanch the bleeding from my hands. My knees and right ribs hurt, as did my right ankle. After sitting in the middle of the street for a few minutes, I was ready to finish my 5K, with my hands wrapped in wipes and a sore ankle adding to the unevenness of my gait. 

I crossed the finish line in 55:18 (17:48 pace, 153 out of 168 in my age group). 

Dad, me, and Mara at the finish. I am the one
holding the wipes. Jake is just off  the left edge
of the image. (Photo credit: Brightroom)

Post-transplant PR! Then I headed straight to the medical tent, providing just about the only action they had all night. The medical volunteers joked as they washed and bandaged my wounded hands that Jan sent me there to test their readiness.

The price for my first running steps since September was bruised and bloody hands; bruised shoulder, ribs, and knees; a sprained ankle; and a scolding from my doctor.

The sprained ankle a few days later, swollen and bruised.

Worth it!