Sorry I've been away for awhile. I realize this worries some people. I am doing well. The last I wrote I had cut off my hair because it was starting to come out in handfuls and my LTD company made it official that I would not be covered. Thankfully my employer, Fenway Health, has decided to keep my health insurance going, at least until they appeal the LTD companies insurance. After that who knows...I am glad for this even though I find it strange. Fenway chose the plan that dictates that I or other employees would not be covered. They could have chosen another plan. Now they are going to appeal it. Optimistically, they too feel that I was not the person they intended to drop. Less optimistically, they are just doing this to look better. I had dinner with someone recently who said she tried to be optimistic about things so as not to throttle people (my interpretation). As this seems better than the alternative - throttling, yelling in the streets, an infectious bad mood, possibly arrest - I will try this. It seems wise.
Anyway, since then I started cycle 2. Proceeded to periodically lose more hair, thus my nice cute cut officially looks like I am balding and I look more like a cancer patient. Even though almost everybody who has seen me says I look great and they are surprised that I don't look "sick," the hair loss is beginning to change that. This had made me realize how much control and invisibility I was experiencing. Whether or not someone knew I had cancer was a choice I could make. That is not always the case anymore. Now when I walk down the street I am more on guard for being asked by acquaintances or strangers, as well as lingering looks that suggest curiosity about why I'm wearing a scarf on my head.
Last week I visited with some family and friends in New York, some who I had not seen since being diagnosed. I met with some close friends in a group and it was good to be around people who've known me since I was 15. At times I felt an awkwardness about having cancer at 32 and kind of a group surprise as if to say, "this is not a reason I expected us to meet up." I'm not sure they felt this, but I did. Part of what is so surreal is that no one prepared me for this. I grew up thinking people die eventually, particularly when they are older. But no one tells you, one day you might get very sick or be faced with an illness that could end your life when you are young. No one tells you your friends who are your age might die young and other than comfort them and try to make things easier, you cannot take their disease away or save their life should it need saving. These are incredibly difficult things to do and yet we are never prepared for them. I'm not suggesting we should be - I don't know what that would look like. I'm only suggesting that the sheer surprise that this was even possible, adds to what is already difficult. I still have moments where I almost forget I have cancer. And then I have ones where I am profoundly aware that I do and I am still in shock. I find myself saying to Dayo, "I can't believe this is real."
Last week my nausea was so much better than it had been in cycle 2. I was very thankful for this. Somewhat happily I was only left with chemo fatigue, which I must stay is strange. I would wake up and feel as though I had not slept. Or get through an hour of the day and feel exhaustion that I can only equate with pulling multiple all-nighters in college where you feel a little loopy, irritable and cognitively challenged. The weird part is usually when you're tired you can point to something physical you did to cause it - like running a marathon or staying up late. Getting chemo is such a passive process. My mind has a hard time connecting laying down for an infusion that doesn't hurt with constantly wanting to sleep.
Today I am back in the hospital getting more inpatient chemo. This week will complete cycle 2. Cycle 3 starts a week from today, Tuesday July 20th. Some days this seems to be going fast and I have started thinking about how I want my life to be when this treatment ends. Some part of me fantasizes that when treatment ends, cancer will end and I can wipe my slate clear of this. I am then reminded I will need to monitor this in some way shape or form for the rest of my life - though much less frequently over time. I am also reminded that there are significant possibilities this may come back and that if it comes back sooner than later, this indicates a poorer prognosis. There are many hurdles to jump. And this is a marathon not a sprint! (I am better at sprinting.) So, I am trying to pace myself, be positive and be more in the moment. At some point soon, I will not be in active treatment and I am really looking forward to that.
That said, I probably have an MRI tomorrow to see how treatment is progressing. Wish me good luck! My nurses are nice and my roommate is once again sadly incapacitated and as a result quiet.
I hope you are having a good day.