As I expected, the MRI today showed that the cancer is back. The spot that they saw on the scan in late August is now about an inch, so they would like to get started on treatment right away. I am sad, but not surprised. A small part of me is relieved, since I have been feeling so bad for the past month and a half. (Though I do wish the tumor had waited until after I was back from vacation to start causing trouble.)
Of course, before I start the treatment, the insurance company needs the doctors to fax something to them, and I need to order the medication through the mail. Hopefully, I can start chemo the week after Thanksgiving. The treatment itself doesn’t seem too terrible. I take Capecitabine (Xeloda) twice a day every day for 14 days, and on those last five days I also take Temozolomide, then I take two weeks off. The good news is that it’s oral medication, since I have exactly one good vein left. It won’t be fun—side effects include fatigue, nausea and dry hands and feet, as well as a sunburn type of feeling. Mainly, however, the fatigue sounds like it would be limited to the latter part of the two weeks and the ensuing four or five days.
These chemo drugs don’t cause hair loss, though it’s kind of funny that my hair is so short now since I buzzed it to be Eleven from Stranger Things for Halloween. I’ll be able to eat whatever I want, nausea permitting, without the raw fruit, vegetable and fish restrictions. (Last night, a friend who has joined me for many “last meals” and “last nights out” and I went out for sushi, just in case it would be off-limits soon.) I can still work out as much as I want, energy permitting.
After three cycles, I go in for a scan to see if the tumor has been reduced. After the chemo, I may have an additional embolization. The doctor said there are a lot of treatments available for this neuroendocrine tumor.
The sad part is that it seems like this is about management. The tumor can go away, but it seems as if these neuroendocrine tumors might just be something I have for the rest of my life.
I also don’t know how long the rest of my life will be. But then again, who knows for certain? Some things make me sad—like holding my boyfriend’s hand and knowing I might not grow old with him. I don’t want to die before my mom does and leave her all alone.
It’s not quite time for such morbid thoughts, though. In my darkest times, I am tired of being sick and would like to give up. I think about how it’s lucky I don’t have children to leave behind, but I also sometimes have survivor’s guilt—couldn’t I give my life up to someone who made more of a difference or will do something important? I have always tried to enjoy and savor life as it is, and I will continue to do so. As much as I need freelance work sometimes, I am going to try to prioritize taking care of myself and being with the people that I care about.
I have been really sad the past few weeks, which has included the Indians’ World Series loss, the election and the worsening of my health. Oddly, it was the discontinuation of unlimited membership of my favorite workout service that brought me to tears earlier this week. It was the final tiny straw in a series of events—a final small disappointment that pushed me over the edge. This cancer news, though it has brought tears, hasn’t hit me as hard. It’s too big to grasp.
In my times of self-pity, I long for things to return to “normal.” It is what I have been hoping for since I found the lymphoma lump almost four years ago. A few months ago, I talked to someone else who was about to start treatment for her second type of cancer. We talked about limitations and how hard they are to accept. It is time I accept that things may never go back to the version of “normal” that I have wanted, and I’m learning to let go of things I thought I might have one day. I suppose it’s something that happens as you get older. When your timeline seems shortened however, it sometimes seems like, instead of letting go of your potential dreams gently and gracefully—like letting go of balloons that drift upwards into the sky as you glance up wistfully—disease comes along and pops them, leaving you confused and holding strings with deflated bits of rubber at the ends.
As I move forward, I will process this more and will probably turn to the blog to sort things out. I am looking forward to a final week before chemo and also to hopefully shrinking down this tumor.
Sending love and light…????