Saturday, November 17, 2012

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.

Saturday, October 13, 2012

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")
= = =

Sunday, September 16, 2012

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.

Thursday, September 6, 2012

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.

Sunday, August 26, 2012

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.

Saturday, August 18, 2012

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.

Thursday, August 16, 2012


Due to a fever on Tuesday night.

I don't want to talk about it.