Help Alex Make It Through Another Transplant

Dear friends,

I’m asking again for help, this time to keep my house out of foreclosure, at least a little longer. I’m asking with the greatest gratitude for the support I've already received, and with all the optimism I can manage these days. I would like to view this as a continuation of the last fundraiser that was set up by my brother rather than another round of begging. It was uncomfortable and humbling to ask twice for help- a third time feels absolutely shameful. I have been told, though, that people still want to help. After all the miracles of love that have blessed me since I first became ill, I believe them. Hence, this rambling exposition:

I have indeed been approved to go ahead with my rare second bone marrow transplant, and it’s been scheduled for October 25th. It’s fast approaching. I need help to pay my mortgage long enough to either (1) rent part of it out so I can stay here, or (2) move back to Utah and be a permanent guest and burden to my family. Last year this time, I was preparing for my first transplant. I thought I would die or be healthy, at least for a while. I never imagined that I would languish in sickness for a year, only to go through the same nightmare again.

I'm in the process of trimming down my life to the bare essentials because I’ve realized and accepted that I won’t ever have a normal, productive life again, for reasons that I hope to get to further down in this mess. In many ways, losing this house wouldn’t be the worst thing that could happen; material things and objects have lost a lot of meaning and significance for me. I am not prepared to leave my daughter, though. It’s something that I lack the emotional fortitude even to imagine. I also need to keep this place long enough to come home from the transplant, where I can spend my 100-day recovery in quarantined isolation close to the hospital and clinic. I was candidly told by my social worker several days ago that I would not have been approved for a second transplant if this had been an issue, but she also has been telling me from Day 1 that I need to think optimistically... I've simply been very optimistic with her regarding my house in our discussions about transplants.

Of course, I would love to keep my house longer than it takes to get better, mainly because it's a wonderful place where my older kids can visit me easily, and my youngest daughter knows it as “home.” It looks impossible right now unless I can keep it until my immune system has regenerated, at which point I would hope to rent most of it out and live in the basement. I can’t do that without help.

Nevertheless, I'm happy to say that the last four months have been at least a little better than the sixteen that preceded them, in no small part due to the peace of mind that all your love, generosity, and consideration have provided. Thank you all again for being here for me, for lifting my spirits with your curiosity and care, and for being the hand holding mine as I slip and fall off a cliff.

I want to share some of my recent thoughts and doings. I have been derelict in my duty to report news to you, and I'm sorry. I've spent a lot of time in the hospital since I relapsed, typically with infections my body couldn't fight on its own. When I am lucid and at home, I‘m overwhelmed with tasks and preparation; drafting wills, forming trusts, establishing powers of attorney, applying for benefits, revisiting life insurance, and putting as many of my affairs on autopilot as I can. I would much rather be building community with all of you!

At the time of my last update, I had just been released from my hospitalization for pneumonia caused by a common, generally harmless pathogen. I was hoping to achieve the deep remission of my leukemia that eluded me last year so that I could be offered the second transplant that might gift me more life. I was weak and uncoordinated, often falling or being suddenly uneasy on my feet. Since I slowly recovered from that last pneumonic hospitalization, I've gotten even weaker physically, presumably due to the cumulative effects of receiving two different cancer treatment protocols at the same time; high-dose oral chemotherapy, together with an immunotherapeutic drug running into me through a pump that I wear all hours of the day strapped to my hip. I sleep as much as 12 hours on the few days when I don’t have some kind of appointment in the morning, and my useful hours are completely over by 4 PM.

My days have been brightened, though, by the periodic presence of my friends and family. One friend came from Iceland to visit me, and my son spent several weeks at the end of his summer watching movies in bed with me and being helpful. A childhood school friend I’ve known since I was 13 spent a great afternoon and evening with me while she passed through town. Also, my younger brother recently came for a week, as did my ex-wife and our children for two days. With all of them, I was able to spend regular, valuable time with my youngest daughter. Although it’s difficult for me to entertain her and make high-quality time for us by myself, we had some wonderful times together when I had help from my son, older daughter, and/or other visitors. I think nobody quite knew what to do with me in the state I’ve been in. I have been told (and I believe) that I’m a different, more difficult person than I was before, but they did their best and it made a difference!

Otherwise, I was and continue to be alone in this old, tiny house, surrounded by many people in the heart of the city but unknown to all of them. I watch people from the window walking their toddlers past my house in strollers. I have a young daughter, too, but it might be five months before my immune system is strong enough that I can see her again. My neighbors’ lawns are made of grass, while mine is full of three generations of dandelions, and the grey, decaying husks of whatever was there before. My thoughts are so loud in my head that they're nearly audible. I can’t stand it, and it takes all my strength to face more of it.

I feel indescribably better when there is just another person in the house, even if they're sleeping, or they come and go without crossing my path. To be aware of some other life here with more familiar concerns and purpose; it’s a revelation. I have had a lot of time to ruminate on what I’ve done in my life, what I’ve left unfinished, and the person I have been while doing it all. Most of the time, this isn’t a healthy situation for me. It fills me with alternating periods of extreme panic and dull satisfaction or acceptance.

Even though I’ve felt like my body has been falling apart and my quality of life is slipping away, my aggressive cancer treatment has been working. By the end of August, a bone marrow biopsy showed that I had entered a state of deep remission referred to as MRD-. This means that, even by molecular analysis, the leukemia in my body was below the threshold for detection. It is greatly preferred that patients achieve this state before they receive a bone marrow transplant. I was close but not MRD- when my first transplant was done. My oncologists were just not able to eradicate the last traces of leukemic cells.

Being MRD- gave me the chance to be approved for this second bone marrow transplant. Second transplants are extremely rare. My oncologist is a recognized authority in the field, and she performs 1-2 per year. They also come with a much more dire prognosis than a first transplant. I’ve been told that I should expect to live between 6 months and five years after the transplant, with 2-3 being most likely. My oncologist has two second transplant patients still alive at the 2-year mark.

I don’t look at this as such a demoralizing predicament, though. For me, it’s the only chance I have to live much longer, and I see it as trusting science in an engaging in a race against time. We are living in a revolutionary period in cancer research. For cancers of the blood, there are myriad chemotherapeutic and immunotherapeutic agents in the pipeline, both in the laboratory and in clinical trials. I hope to be alive in two years, when there might be another, newer approach that is a cure or extends my life to an even further approach. Who knows how long this might stave off death?

With a plan that offers hope for more life, I've had to face the reality of what more life might look like for me.

I currently live only on Social Security disability income, and that might never change. I'd been rehired at the dream job where I was working when I first became ill in April of last year, but I could never even surpass the minimal work requirements that qualified me to receive medical insurance. It wasn’t until three months after I was rehired that someone at the firm who knows me well told me that my mental function seemed to approach what it was before cancer and chemotherapy stole it from me. When it became clear that I would have to stop working again to get my second transplant, I lost that job; the very thing that had given me purpose and hope for the future only a few months before.

As I’ve considered the time between my last transplant and now, I've had to understand and accept that I most likely will never work again. To do so, in fact, could be a very illogical decision. For example, I currently receive disability income because my income is below an established threshold. I also become eligible next Spring to receive Medicare coverage because my disability income is so low. Therefore, I would have to be able to return to work with a salary above my disability income and adequate health insurance just to maintain my status quo. I also would have all the responsibilities of having a full-time job when I don’t know how much life I'll have left to spend time with my children and make peace with my legacy however I can. A further problem is that the next time I look for work, even if everything goes perfectly with my treatment, I will be 48 or 49 years old, and I will not have worked full-time in more than two years.

More material than these obstacles, though, is my recent realization that I will never again have the energy and capacity I had before. By all the tests that have been done (and there have been many), I have an adequate, if not robust, immune system now. My leukemia has also been reduced to an undetectable level. I tolerated both of the treatment protocols I'm receiving simultaneously well before, even if independently. Yet, I feel as though my condition is worsening. I'm more tired, more isolated, and less engaged. I lack a purpose.

I have wondered aloud quite a bit over the last few months why I won’t give up and succumb to this illness. The obvious answer to myself and everyone else is that I need to keep living for my kids. This answer has merit- my youngest daughter is 3. If I live another two years, I know there is a big difference between what a child of 5 remembers as opposed to a child of 3. If I live another three years, that's even more the case for a child of 6. Knowing this and valuing it above all else, it's very surprising to me that my children can't fill that void of purpose in my mind. It’s as if I need something deeper in and of myself that both supplies and receives a purpose from simply existing for my children.

Perhaps it’s hard for me to imagine that there is any value for my kids, who I love more than anything else in this world, in simply having a living person whom they call “dad.” If the rest of my life is spent staggering dangerously about in near confusion, residing in a remote basement or trailer heating frozen pizzas, rarely seen and thought little of, what value lies in that for them? As compared to cutting the losses in my legacy now, when this miserable episode in my life is still just a tiny, vestigial tail at the end of a grand body of work? It recalls to me the words of Schopenhauer, who would cast every additional day I have as an extension of a morally futile endeavor:

“God, who prescribes forbearance and forgiveness of every fault, exercises none himself, but does the exact opposite; for a punishment which comes at the end of all things, when the world is over and done with, cannot have for its object either to improve or deter, and is therefore pure vengeance. So that, on this view, the whole race is actually destined to eternal torture and damnation, and created expressly for this end, the only exception being those few persons who are rescued by election of grace, from what motive one does not know.”

Arthur Schopenhauer, The Christian System.

I search every day for the grace that might lift me from these cruel and dispiriting thoughts, and for its logic or motive. My mind has no answers yet. The only panacea I have found is in the body, physically accomplishing my next task. I devote myself to the next thing that might be even a little within my control. In real terms, this has meant spending several days each week in the clinic being tested and treated, where the remaining days are spent corresponding with or waiting on hold to talk to representatives and agents of life and health insurance companies, state and national agencies, hospital billing departments, the IRS and the Oregon revenue service, student debt-servicing companies, and home and auto lenders.

I think I’ve found an answer in all this banality. I learned a while ago that love is not a passive affliction or perception. It’s the effectuation of kindness and generosity. Maybe the grace that saves us from punishment and damnation in our most challenging times isn’t acceptance or appreciation for our condition, wherever it came from, but instead is our engagement in life. I think it takes many shapes. Maybe from a celestial view, there isn’t much difference between working all night in a lab to acquire data for a Ph.D. thesis, exploring a new city in a new country, and eating a frozen pizza on the hood of a rusty car in your underwear. Also, I don’t think it matters if you enjoy it. At the moment it’s happening, if your mind is fully invested in the action of what you are doing, it isn’t weighing itself down imagining what else might have been and how much more satisfying or fulfilling that other thing would have been.

Understanding this, and occupying myself as much as possible with my daily docket of stupid and otherwise frustrating activities, allows me to forgive myself most of the time for my circumstances. However, I’m admittedly not very good at it. My mind wanders, and then I have a panic attack or intense feeling of loneliness and abandonment, not by any of you who love me, but by whatever God or mathematics predestined this fate and condition.

I’ve also been dealing with the extremely saddening realization that I haven’t truly ever enjoyed more than a handful of moments in my life. I grew up in an incredibly harsh and abusive environment, eating my dinner from a dog bowl on the floor when I was messy at the table, and being thrown through a door when a lamp at my desk went out. From an early age, then, my goal was to gain people’s love, appreciation, and respect. I sought perfection in everything. It was actually my stated philosophy: Try to be perfect because, even though you know you will fall short (there is always someone smarter or better than you at anything), you will end up having done the best you could have done. Setting aside for a moment whether this is actually true, it leaves no room for happiness or anything other than disappointment. I even remember a conversation I had with my mom in high school where she asked me what I wanted in life, and I told her that I wanted to make a mark, be remembered for something great, or something to that effect. She told me that she just wanted me to be happy. I honestly replied that being happy just wasn’t important to me. I vividly remember how all the blood disappeared from her face. She simply couldn’t understand how that could be my truth.

Back to cancer.

Leukemia has fully become a part of me. It's been in me now for almost 19 months. During that time, I was told over and over that I'm certain to die this month or that month, maybe a year from now, two to three years from now, maybe five years from now, and so on. My expectations and the feelings therewith have just been turned off. Nothing makes me overemotional anymore except the absence of my kids, and all the things that contribute to that. When I stop keeping busy and allow myself to go to that place in my head, all kinds of horrors come out. I have days and nights when I sob uncontrollably or search in vain for someone or something to soothe me. I don’t want to die, and I specifically don’t want to die at this lowest point in my life, impressing no one and being respected only for things in the past.

But I’m not dead. It doesn’t matter who is impressed or who might respect me or not. I know that I'm loved. Everyone in my life proves it every day. I will be here for my children, not sitting on a couch forever waiting for them to see me triumphant, but engaged in the matters of my life to the extent my health and circumstance allow. I’m going to let things unfold in the way they must. I will do what I can, but there is far more outside of my control than within.

Please help me this one last time. There is no such thing as a third transplant. One way or another, this ordeal is reaching its end. Whether I’m warm and comfortable in my house or a guy living in the basement of my ex-wife’s parents, I'll know that I’m loved and that I’ve made a difference in people's lives. If I’m dead, that knowledge will just be saved and sent to the printer. I’m not done fighting, though; that means and might only mean that I’m still living. I will do everything I can to be here for my kids, for you, and for myself, even if what I can do is almost nothing. It’s all I can promise, and it’s all that there is.

Love,

Me and all my bits and pieces