It has been a really rough couple of weeks. I had the PET scan
about 3-1/2 weeks ago, and got the results a week later. I jumped right into treatment again, starting chemotherapy two days after seeing my oncologist.
However, the hard truth is that this cancer is progressing much faster, and in a worse way than Kevin and I had hoped. I only finished my previous round of chemo in June of last year. Since then, I've managed to develop one brain metastasis, and a host of bone mets - spine, one rib, and hip bones.
The physical reaction was pretty awful. The bisphosphonate (Zeloda), I was told, can cause a "flu-like reaction", and they weren't kidding. High fever the first day, and lots of aches and pains. The single worst reaction to chemo that I've ever had. I'm still taking painkillers.
Still, I could handle the physical stuff, I think if it weren't for the emotional hit. We generally hope for the best, and plan for the worst. This feels to me like the worst. Kevin and I were both hoping this cancer wouldn't progress to the bones, or another organ, (liver or lungs) for a while yet. And bones mets are nasty. that's when you start having pain to go with everything else. At least up to this point all the pain I've endured was caused by the treatment, not the disease itself. I would prefer not to take narcotics all the time, like I have been the last two weeks.
But I'm in despair. Our daughter is twelve. I've hoped, over the last six years, initially to live a normal life span. Then I hoped to make it to 62, to retirement. Then 55 - early retirement? Then, when the cancer returned, I ratcheted it down. Tessie reaching age 18, that's 6 years away. Now I still hope for that, but I wonder about it being even shorter - two more years? Three? It feels truly awful, and haunts my imagination in the middle of the night. And most of the day. Externally, I'm managing to go through the motions - going to work, cooking supper, dancing, hanging out with friends, getting treatment. Inside, I'm curled up under a blanket, and clutching a teddy and crying. Terrified. I cry in the shower, with my head resting against the cold tiles, and hot water running down my back. I drop Tess off for ballet, and cry in the car once I'm by myself.
I don't fear death, particularly. I can see how people with cancer eventually stop getting treatment, and go into hospice care. As my body again turns into a ragbag yet again, it's easy to imagine stepping out of it, whatever lies on the other side.
I fear a cage. Being stuck in a body that I can no longer move, or communicate from. And I fear the repercussions on my family. I don't think I know anyone who lost a parent or a spouse with a child in their teens, but I imagine it, for Tess and Kevin. And it feels dreadful.
Nobody loves chronic. There's nothing I can do, or anyone can do, about this, except witness it. Friends ask what they can do to help. Bring us food, do a dish, fold laundry. But first of all, listen to us. Take Kevin out for a beer, and let him talk about how awful it is. Ask me what it's really like, and get out the box of tissues. And recognize that a month from now, when you ask again, it may not have changed, and that the half hour feels like a repetition to you. It probably is. But it's what we are enduring, and the unchangingness of it is one of the challenges.
And alas, now I'm learning the difference between chronic and incurable. Chronic is something that affects you permanently, but incurable adds the load that even if you go through treatment, and do everything right, the disease will probably still eventually kill you. Sooner, probably, than you would like.
I suspect I will adjust over the next few weeks. I generally feel pretty lucky. I adore my family, I have a good job that provides my health care, I live in a very safe and wonderful place. I just wish that this threat wasn't hanging over me all the time. It starts to feel like I'm carrying a dumpster around on my shoulders - absolutely wearying and exhausting, and no getting away from it.