Strangely I’ve had little more energy today than yesterday, even though my hemoglobin is even lower. The platelet transfusion yesterday increased my counts enough for a slightly more vigorous work out today. In addition to riding the bike at a very easy pace, I lifted the dumbbells a bit. We’ll hold off with red blood transfusion for another day or two.
My tongue is swollen in my mouth and it rubs against my teeth on the side, and that is making the tongue sensitive. As result of the chemo slime production all throughout the gastro-intestinal track is way down, including the saliva my mouth. The dryness of my mouth diminished the pleasure of my first room delivered pizza last night. Still it was great to get it. I suppose the biggest issue right now is dealing with my stressed out kidneys. The chemo, as expected, has been hard on them. My potasium and creatinine levels are high, the former is a bigger concern than the latter. So, I am on diuretic that ensures that I get plenty of exercise standing up and walking to the toilet. I am also taking a substance that it supposed to capture the potasium in my gut before it metabolizes. The doctors expect the kidneys to bounce back to a better suboptimal level, and they don’t seem terribly concerned yet.
When I return home, the house will need to be very clean because my immune system will still be weak. So, BF hosted a house cleaning party today, promising pizza to everyone who showed up. Amazing, she tells me, over 20 people showed up! This is another example of the wonderful generosity that people are bestowing on us. The transplant itself, all of the words of support that I receive from friends, the friends who have come to stay with BF to help around the house, the neighbors who walk The Dog, and now the house cleaners. It’s all deeply moving. I am very grateful for it.
Why do I write? A dear friend wrote to me today asking if I was choosing to be upbeat in my messages so as not to worry people, and if that is the case urging me to be willing to show the hardship more. I started out writing with the purpose of informing family and friends. But the writing has taken on another kind of meaning for me. It has become a way in which I can make something out the experience. It’s not an experience that anyone would choose to have. As a patient I may be hostage to the disease, the biochemistry, and the medical treatment. I may not control the outcome, and I may have to suffer the experience. But if I have to suffer it, perhaps I can have something to show for it. This record itself is what I made of the experience, and I hope what I made is good. So, I work to convey the experience. The writing is not a therapy journal written only for myself. I would like it to be good in the sense that it touches others, but also in the sense that it is honest.
Honesty and comprehensiveness are not the same thing. I don’t have to write about everything, but if I write about it I aim to convey it honestly. If I’m not fully comprehensive, it’s not because I am consciously choosing to avoid the bad stuff to spare the worry of my readers. I have talked a lot about the physical suffering. But so far that has not been as bad as I expected. Regarding the psychological suffering, I think I’ve explored some dark places. Day +2 goes there, as does to a lesser extent +4 and the earlier “Patience” post. I admit that it is harder for me to write about the psychological suffering. I think it’s harder because it feels more exposing. Still, I hope that I haven’t been avoiding writing about it and that when I write about it I capture it.
Not only the friend who wrote today but others, have remarked that from what I write I seem to be doing very well. I wasn’t doing great on Days +1 and +2, but mostly it’s true that I have been optimistic and given the circumstances energetic. All of the support that I have received has played a role in that. I didn’t realize how much support the blog would generate. Sometimes when I wake up in the middle of the night I read the comments. Or, I start the following day by reading them. The support has been very important to me. I also write for the support.
Lack of great physical suffering thus far and receiving great support have allowed me to stay fairly upbeat. But I have come to realize that by disposition I am also generally positive. I’m just lucky that way. It’s probably due to good parenting and good genes, both of which were simply gifts, not in any way accomplishments of mine.
So, if I am upbeat, it's been a matter of good fortune: lack of severe physical suffering, the loving support of others, and the gift of a positive disposition. All of them also reasons to be grateful.