Tonight you cry. Tomorrow you rally.
I met with the sarcoma doctor yesterday to dive into what exactly I have, and a plan. We have a full diagnosis. Sarcoma, which is cancer of soft tissue and bone. Mine originated in the soft tissue of my small intestine, in primitive cells, which is what has made it so hard to identify. The sarcoma doctor is not convinced that I have sarcoidosis, and feels that my lymph node activity is still highly suspicious for malignancy.
So the plan is chemo. A pretty hardcore regiment. I start with a three drug cocktail in full day of infusion. Then have a three week break to allow my body to recover. Then I do a two drug combo that takes three days to administer, with another three week break. With these drugs comes the usual suspects of chemo side-effects – hair loss, nausea, loss of appetite, fatigue, prone to infections, etc. In addition, these drugs are very rough on the bladder, kidneys, and heart, and can cause nerve damage resulting in neuropathy. There is also the risk of infertility, but that one is a wash for me. Oh well. Oh, and also, this might one day also give me ANOTHER cancer!
So I’m not afraid of chemo. I say that in earnest. I know it’s going to SUCK. I know. I get it, and I’m ready for that. I’m so anxious to get going, to start treatment, to see if this works.
That’s the key. See if this works. While I’m being classified as sarcoma, they still don’t have an exact sarcoma type nailed down, so we’re treating this as if it was Ewing’s sarcoma, but it’s not quite the same. So we just start this treatment and hope for the best.
So what is the best? What is the worst? So we went through all of this, and asked the doctor, “What is my stage? I’ve never been given a stage, and you usually hear cancer classified by stage.”
“I would say based on my opinion that the metastasis in your peritoneal wall are not the primary source and that I feel your lymph nodes in your chest are still highly suspicious for malignancy, you are stage IV.”
Ug, gut punch. Stage IV is what you hear when someone is at death’s door. The cancer has spread and there is no hope. How scary is that? We pushed further to understand the full scope.
“What would you say the prognosis is?”
She looked at me for a moment. “Do you really want to know the answer?”
I took a second, feeling hot tears gather in my eyes. I nodded.
“Taking everything into account, the median survival time for this is about 18-24 months. That is highly variable, though.”
Wow, and I thought that stage IV bomb was a gut punch.
So back to thinking about my kids, my husband, my family, my friends. Thinking about everyone I’ll leave behind. Is that really what is it? I’ve got two years?
Yesterday was a dark day. But it’s okay to have dark days. Especially when you get tough news like this. But I think my husband has said it best when offering me his version of tea and sympathy:
“Tonight you cry. Tomorrow you rally.”