GVHD and Some Candor About Loss, Grief and Therapy

Well, it's here...again. I've got Graft vs. Host Disease. So fun. Actually, compared to how it was just after my transplant last spring, this really isn't that awful. My allogeneic (donor) transplant was on May 29th last year. While recovering in the hospital over the next couple weeks, I got some GVHD throughout my GI tract...mouth and throat sores that made it very hard to eat and swallow and necessitated a pain pump, and issues with my gut and bowels I won't describe in any detail. =0)

Now I've got GVH of the skin. My donor's cells are viewing my skin system as something foreign - remember that no one told my donor's cells they were "moving" - so they're attacking it. I have bumpy, rashy skin all over my body...well...not really all over. The soles of my feet, the palms of my hands, my...um..."stuff," and the majority of my face have been spared...to this point, at least. There are a couple splotches that look like dry, raised little lesions on my legs, the back of my left hand, and one on my bum by my waist. Around my eyebrows, eyelids and around my hairline, the skin is dry and flaky.

At my clinic visit last week Tuesday, the GVH wasn't quite as bad as it is now. A cream-based medicine was prescribed for me, but I'm just about out and my insurance won't allow a refill until the end of this week. Ugh. I can't put the cream on my face, so I just have to live with it there, I guess. There's a pill I can take for the GVH, but my doctor wanted to just stick with the cream and bump up my Cyclosporine (immuno-suppressant) and see if the symptoms subsided. Bummer. Now, there's the possibility that I'll have to go back on steroids...my favorite. Remember how grotesquely swollen my head and body got last summer and fall? Yeah, that was the steroids' wonderful work. I'm really NOT excited about that prospect. That'll just delay my ability to re-enter society as a whole even longer. Once you're on steroids, you have to taper them gradually. The tapering process feels like it takes forever, and the steroids also sap my energy. I really hope they can find another way to manage this GVH. I've scheduled a clinic visit for Friday to reevaluate my GVH and determine what we're going to do.

The GVH really doesn't hamper my daily activities...it just makes me itch a lot right now. It can get a lot worse, as I understand. The skin can thicken and get really tight and inflexible. At every clinic visit since my transplant, I've been asked to put my hands palm-to-palm in front of my chest with my fingers pointing up like I'm praying. They always look at how flexed my wrists can go to see if I've been losing any flexibility. I hope it never gets so bad that walking, cooking, typing, showering and other activities become terribly difficult.

Hmmm... Let's see... What else has been going on?

Sarah, the therapist I've been seeing since last September for mood/temper/grief issues is moving to Connecticut with her husband and son for a job transfer for her husband. I had my last visit with her a couple weeks ago. Sarah's been so great for me. Gratefully, she's referred me to a colleague of hers named Kathy. I've had a couple visits with her now, and it looks like that will be a good fit, too. The amount of grieving I was going through last summer had begun to become oppressive and I was trying to keep it all bottled up and stay strong. I wasn't succeeding. My mood spiraled downward and my temper got a little hot. You see, there's a lot of loss you go through with leukemia and stem cell transplants and such. Let me just innumerate some of the key losses I've experienced, either for a while or on an on-going basis...

I lost my health. Though I've never been svelte and muscular - what might fit the classic definition of being "fit" - I've always enjoyed pretty solid health. Several years ago, when working five consecutive stressful weeks in Hayward, CA, one day I thought I was having a heart attack and was rushed to the Kaiser Emergency Room. After a litany of tests, the ER doc came in and said, "Mr. Philpott, we've checked everything. You're the healthiest 'sick person' I've ever seen. My prescription: some Tums and a lot less stress." Well, with the cancer came chemotherapy, which wasn't really awful for me (thankfully), but did sap my energy and strength a bit. Then came my transplants, my "three weeks of hell" last June and July, and my subsequent loss of virtually all strength, energy and semblance of health. I felt like death just barely warmed over almost all the time.

I lost the freedom to make concrete plans for the future. When you're diagnosed with cancer, plans kind of go out the window...at least for a while. The reality of that all set in and slapped me in the face right away when my test results came in, changing my working diagnosis of ALL to PCL, receiving a call from LDS Hospital to schedule me for admittance to begin my chemo, being told I'd be there for about 6 weeks starting that day, then within a couple days of admittance being told it'd only be about a week, being released then admitted again with pneumonia less than a week later and only two days before my daughter's baptism. Yikes! If that whirlwind didn't teach me to not fill my calendar with anything that wasn't related to my cancer and its treatments for a while, I don't know what would have. Everything became about "when's my next chemo appointment," or "when's my next test," or "when do I have to take more blasted pills?" With my transplants, planning anything became even more difficult. I didn't even know how long I'd be in the hospital. I haven't even mentioned long-term plans. There was a pretty consistent fear related to all of the "what-ifs" that crept in. What if I don't make it through transplant? What if the transplant doesn't work? When I was in the hospital with failing kidneys and liver and unable to communicate with anyone, I wondered, what if I'm a vegetable the rest of my life? With those kinds of negative "what-ifs" running through my brain, I had a difficult time planning to do anything or looking forward to anything that was very far down the road. Getting back to work someday, seeing my kids graduate high school and college, going on missions, getting married, having children of their own...sometimes it was nearly impossible for me to imagine actually being around for those things. I've always been a dreamer. I've always loved looking ahead to things. The excitement and anticipation have always been about as much fun as the actual thing I'm looking forward to. Having that taken away was devastating.

I lost my job. February 14, 2013 was the last day I worked my day job. I've been taught all my life that one of my primary roles is to be a provider for my family. I've always worked hard to do so, and losing the opportunity to even try was terribly frustrating. Losing my income was tough, too. We went seven months after leaving my job before my first Social Security Disability payment finally came in, and I felt like I was failing my family. I knew it wasn't my fault that the cancer had taken away my ability to fulfill my role as provider, but it's hard to look at the bills coming in every month and not feel like it's your fault you have to struggle so hard to pay them.

I lost my temper a lot more regularly. With the frustration and anger about all of the various losses I was experiencing, coupled with the steroids I was taking, my patience always seemed to run paper-thin. I found myself spending a ton of time apologizing to Noelle and the kids for losing it so often. I love my family. Anyone who knows me well knows how devoted to them I am. I just struggled with reflecting my love and devotion to them in my words and actions.

I lost my ability to do a lot of things around the house. Because my immune system is so compromised, I can't be around anything dusty or any heavy-duty cleaning agents. I can't vacuum, dust, or mow the lawn. I can't clean the bathroom. I can't cut my boys' hair. I enjoy cooking, and wanted to do it a lot for my family seeing as I was home all the time, but just didn't have the energy to be in the kitchen and on my feet all day or even for just a couple hours. It's hard to want to help with all the time you have, but be denied the opportunity, either by your doctors or your body. Which leads me to the next thing...

I lost a lot of my self-worth. It's hard to not feel kind of worthless to those around you when they spend so much time and energy serving you and doing things for you and others you feel like you should be doing, and you don't feel like you can give anything of yourself back to them. I struggled with feelings that if I weren't around, life would be a lot more pleasant for everyone I care about. I felt like I contributed nothing of value to my family, my church, my community, or my relationships with others while draining them of all of their time, talents, resources and energy. That's really hard for someone who has always needed and derived a great deal of satisfaction from a sense of belonging...being a contributing and valued member of a family, a church congregation, a group of friends, etc.

I lost my ability to go to church with my family every Sunday. Members of the Church of Jesus Christ of Latter-day Saints (aka the Mormon Church) spend at least three hours every Sunday in regular church meetings...not including choir practice or any other special meetings. Some people outside the Church suggest that's excessive, but I've always enjoyed it. There's a great deal one learns when they attend three solid hours of sharing thoughts, feelings and testimonies of Jesus Christ and His gospel with others. This weekly tradition, along with personal and family scripture study and prayer, has helped me to develop the faith that has been my foundation through the struggles of the last 19 months. The learning and development of faith is one thing. The sense of fellowship and the relationships one develops is also incredibly important. My family moved to our new home, and thereby changed our ward (or congregation), just three months before my diagnosis. That's just not enough time to really get to know many people and become immersed in the social aspect of the Church. Our ward has been wonderfully supportive through our cancer journey, but it's hard - really hard - for me to not know many of the people with whom my family attends church and to not feel connected to my "ward family."

I lost my looks. I'm not vain, but when I looked in the mirror following transplant, hairless and weighing in at a scant 170 pounds, I didn't see myself. I saw my father just before his death from cancer in 2006. When I went on steroids, and my body ballooned from 170 pounds to nearly 250 pounds in just a couple months, I didn't look much like myself, either. My skin was stretched to the limit and I have the stretch marks to prove it. It's not that I wanted to look movie-star handsome; I just wanted to look like myself.

Anyway, that's a lot to lose. During one clinic visit in late August or early September of last year, I ended up opening up to my PA about the stresses and emotional problems I was having. I finally owned up to the fact that I needed some help dealing with it all. Gratefully, I was told that this issue is very, very common among BMT patients - and I'd imagine all or most cancer patients. That helped me feel better. I was given an anti-depressant medication called Effexor (sp?), and began seeing Sarah. Change didn't dome right away, but gradually things have gotten better - much better. Do I still lose my temper? Yes, but nowhere near as often as I used to. Do I still get down sometimes, grieving for the things I've lost? Yes, but I have some tools to help me get through it now.  I'm so incredibly grateful for the therapy I've been through and will continue to go through and for the patience of my wife and children as I work on me.

I guess the last thing I should mention is that I've decided to write a book. I'm still working out the kinks when it comes to the book's scope and focus. Just in making some early notes, I've realized that this thing could really get out of hand when it comes to the quantity of material/pages. I hope to keep the size down to a size that's not intimidating to anyone, but still have enough substance to be of worth to its target audience. Now...whether anyone in the target audience would ever chose to buy or read it, let alone whether or not I can even get it published, is left to be seen. I'll write more about the book as time moves on and I get further into the process.

I guess that's it for now. This post is long enough. =0)