It has been awhile since my last update. I have been frustrated with my progress, and I notice that when I relay my frustrations, it irritates or disappoints others who are reading and following. Recently, I caught another infection which led to an increase in treatment, more visits to the hospital, and a general step back in terms of my physical condition. I got the call the same day I was supposed to sit for an exam. It seems that every time I try to move forward in some small way with my life, the treatment has something else in store.
The infection is not serious; it just means more time at the hospital, my appetite has decreased, the joint pain has increased, and my energy levels dropped such that I would give anything for an uninterrupted week in bed without any responsibilities. Nevertheless, the show must go on and there is something to be said for maintaining a lifestyle beyond treatment.
During this period, I cope by making a list of things to do. I keep up with paperwork (a never ending saga when dealing with the government or healthcare); I continue my studies; I exercise as I am able, which means pushing through the joint pain and avoiding heavy lifting for the moment; I read the Good Book or listen to sermons for comfort, I try to follow politics and business, and I keep track of upcoming milestones. For example, it has now been over 100 days since my transplant.
Not too long ago, the 100 day milestone was a benchmark of sorts. It was the sole indicator as to whether a patient would likely pull through or not. With the addition of new treatment and medicine, this milestone is a bit of an anachronism. Now, if a patient is still struggling with GVHD, there are other methods of combating GVHD. I am currently undergoing several of those methods which appear to be efficacious for now.
The next milestone that I'm eager to hit is September 3. On that day, I will have completely tapered off my evening dose of Prednisone, the nastiest drug in my arsenal of necessary evils. From then on, I will be at 100 mg of Prednisone in the morning and the taper for that will commence shortly thereafter. Getting off Prednisone will be a major catalyst in my return to physical and hormonal normalcy. I also continue to reduce my narcotics intake at a faster than recommended pace. I believe in the necessity of these drugs, but I also believe that getting off the pharmaceuticals is a must.
On a final note, people ask what I eat. I don't go on any crash diets such as the goshen diet, drinking your own urine (not joking about that at all), or relying on some snake oil that so and so is pushing or a panacea that Big Pharma is hiding. Instead, here is a typical meal which consists of water, kefir, mixed greens, a whole avocado, carrots, broccoli, olive oil as dressing, cheese and croutons for taste, a tuna wrap, and some fruit. Now, to dispense with the fact that I'm a perfect angel, I'll admit that I load up on some ice cream or a shake if my weight starts to drop too much.
I have tried Blue Apron based on the suggestion of a good friend. I think there's a market for the product, and I was very pleased with the taste. The problem is that prep time is long and we are often away from the house during delivery. If I take a turn for the worst and need to be hospitalized, it isn't easy to freeze the order. I think Blue Apron and other such products would be a viable choice for patients with set schedules.
For now, I will continue pushing forward and using most of my free time to prepare for this final exam that I hope to take ASAP. Despite the concerns I have over my situation, I am very thankful for my supportive wife, family, network, and a God who is present with me always and greater than cancer or death. Also, Kudos to U.C. Berkeley for being so supportive of this situation. I received a very gracious email from them today. In fact, I have received nothing but good news and support from the school. Go Bears!
