I had all of these ideas for posts in my head the past few days but didn't have time to write about them and now I've forgotten all of them! Let's see if I can remember some...
First good news is that it's finally sunny again here. The weather doesn't really get me down, but I do get tired of gray and rainy for weeks on end. The sun just brightens everything!
After my first transplant I didn't get readmitted to the hospital. Period. The first time I was readmitted in almost four years post first transplant was this past fall when I had gall stones and we found out that I had relapsed. That is basically unheard of for bone marrow transplant patients. Everyone gets readmitted for something. This time I'm less than six months out and already have two non-serious, short readmissions under my belt. What's the difference? Well, the first time around for the first year after transplant I literally only left my house to go to the doctor and take walks outside. Only a few visitors, no stores, no restaurants, no nothing. I had a different doctor and was at a different cancer center, and he had very strict rules and scared me into submission. At the time I really thought that it was better to be bored OUT OF MY MIND for a year than to risk an infection that could kill me. This time around, I know how miserable that kind of life is and refuse to do that to myself again.
The medical details were different too; I was still on fair amount of immunosuppressants at this time four years ago (actually didn't get off of them until I relapsed) and already after this transplant I'm off all immunosuppressive medication. Your immune system works better when you aren't layering medications on top to stop it from working. Amazing, huh? Also the philosophy at my current hospital and of my current care team is very different. They really encouraged me to go out and do things once I was post day 100. I think a lot of that is because I'm being seen in pediatric care now (young adults still count as peds for transplant at this center) and of course it would be completely impossible to keep young children inside for a year. In general the pediatric view of care, from what I've encountered, takes quality of life into account much more than the adult teams do for many different aspects of care. They realize that it's good for the spirit to be out and about, as long as you're being careful and not doing anything too crazy. For the amount I've been doing, it's pretty amazing that I haven't been back in the hospital more often. I've been going to trivia night at a bar since they went smoke free on May 1st, I've been going out to a cafe for my French conversation group nearly every week, last night I was out at a fundraising event for a local cancer support community, I'm seeing friends, going shopping, going to restaurants... it's amazing compared to the first time around! And my spirit is noticeably better. I remember four years ago after my first transplant around this time I was miserably bored and trying to force myself to be content with the life I had. I felt so uncertain about my future and could barely think ahead a few days because I was so focused on my health, living by my blood counts, hoping to dodge the next bullet. I couldn't envision anything interesting ever happening to me again. It was a long, boring, uneventful life lived three or four days at a time. On good days, maybe a week at a time. I was trying to just be content with what I had, which was uneventful nothingness and being unable to imagine a different future. I felt dead on the inside.
And now I'm out, I'm doing things, I'm seeing people, I have plans, and I enjoy thinking long into the future and thinking about things I might plan for the future. Of course I have good days and bad days, but I'm so much happier in general than I was four years ago at this time. And on the bad days I can go buy myself something to improve my mood.
I discovered towards the end of my year of enforced solitude that in order to feel alive, to feel as though all this shitty treatment I've been through was worth it, I have to feel emotions and I have to be a part of life. I'm sure some people look at me and think I'm a little extreme and crazy in my absolute passion to live and do things and be part of life, but that's how I'm happy. I am not happy giving up things and renouncing life and trying to be content with what I have. I always want more, I always want to go somewhere new, do something new, feel more, experience more. That is what life is all about! Life is meant to be lived, not merely existed, miserably trodding through like a drudge.
So I dream ahead. I make plans and alternate plans and alternate alternate plans. I think far in advance - to the end of the month, to the summer, to the fall, to possibly applying to go back to France again, to maybe enrolling in school, to places I want to travel, to trips I will take. I may not be able to do these things yet, but someday I'll be free again, and I want to be prepared. In the meantime, it makes me happy to plan and imagine a better future.
So to close today, some quotes:
"Feel, feel I say - feel for all you're worth, and even if it half kills you, for that is the only way to live, especially to live at this terrible pressure, and the only way to honour and celebrate these admirable beings who are our pride and our inspiration." In letters to friends, again and again he urges them to feel. Feeling would stir up empathy and would remind them that life was worth living.
"Live all you can; it's a mistake not to. It doesn't so much matter what you do in particular so long as you have your life. If you haven't had that what have you had?"
Both from Reading Lolita in Tehran by Azar Nafisi
And finally, my favorite quote:
"But I can't give up wishing," said Philip, impatiently. "It seems to me we can never give up longing and wishing while we are thoroughly alive. There are certain things we feel to be beautiful and good, and we must hunger after them. How can we ever be satisfied without them until our feelings are deadened?"
George Eliot, The Mill on the Floss
P.S. I might be a little crazy, but I like my crazy.