I had planned to do a blog post two weeks ago. The afternoon of my biopsy result seemed like the perfect time. I would have had a chance to talk to my doctor and I could fill everybody in. I don't know what I anticipated hearing. I do know it wasn't what I heard, which was this: "Without chemo, you have six months to live."
"You have six months to live" isn't something I could just run out and post. That's the kind of thing you have to tell your kids about first. You have to call your parents. And I wanted to find out exactly what it meant. If it was six months without chemo, what would with chemo mean?
Just last month I had been questioning the wisdom of renting an apartment without an elevator, but I hadn't been questioning the wisdom of seeing myself alive in it.
During the doctor's appointment a couple of weeks ago, the Palliative care nurse was talking to me about pain meds. She wanted to put me on morphine. The doctor asked Marc to step outside the exam room with him so I could talk with her about dosages.
When he took Marc outside he asked, "How are you holding up?" And, "Have you called hospice?" Marc said, "Well, I thought hospice was for when you get around the 'six-months-to-live' time frame." "That's what I think we are looking at," said my doctor.
Meanwhile, in the exam room I was learning about morphine. I was to get a slow-release capsule every 24 hours and a shorter-acting liquid every four hours for breakthrough pain. The nurse went to finalize the prescription, leaving me alone in the room for a few minutes until Marc came back. His eyes were red and he told me what the doctor had said.
Then the doctor came back in and offered clarification. Without chemo he thought we were looking at six months. He couldn't say exactly, but he was thinking on the order of months because of how fast the tumor was growing. He also saw new growths on the left side on my throat as well. He made sure to say that while chemo can't cure oral cancer of the tongue, it may slow down some of the tumors and can help with pain for that reason. He wanted us to make sure and talk to the oncologist that day.
The oncologist examined me and gave me her recommendation of a mix of three chemo drugs, based on results of recent clinical trials. The drugs would be administered once a week. Each visit to oncology would take over half a day. It would take about two months before any results from treatment could be assessed. She went over all of the possible side effects. Every patient is different, but everyone suffers from at least one of the side effects.
A few of the side effects include: nausea and vomiting (vomiting is scary with a trach), facial rash - particularly around the mouth and chin, thining hair, sore throat, hearing loss, and nerve damage to hands and feet. The oncologist said to take my time, think about it and let her know if it was something I wanted to consider. She said she would completely understand if I decided not to get chemo. There is no guarantee of benefits. From what I have read so far, the average person lived an additional two months with Palliative chemo. There is nothing I have found yet about their quality of life during that time.
I had Marc call Matthew and I talked to him as best as I could. Marc spoke to both sets of parents. We waited until Natalie came home from school for spring break to tell her. We didn't want to tell her before then and mess with mid-terms.
This week I plan to check out studies and make a decision one way or another about chemo. It would be one thing if chemo had even some hope of curing my oral cancer. It works better for cancer at the back of the throat or the base of the tongue. Mine originated in the front part of my tongue.
I've spent as much time as possible with family and friends lately. Last week Marc and Natalie and I went to Florida. Natalie and I stayed with my dad and stepmom. Marc had a Navy Reserves conference, but was able to get over to see us for a couple of nights. My sister met us down in Florida as well.
Both of my brothers have come to see me, as have dear friends from Chicago.
Matthew got permission from his job to work remotely one week a month. He'll be able to work wherever I am for a week each month this spring and summer. Thank you, Accenture!
I'm feeling very blessed with supportive people in my life as I decide what to do next and navigate the months ahead. I'm mostly trying to be as cliche as you can get: Living each day to the fullest and letting people I care about know I love them. I can't think about my life in terms of a certain number of months because they really don't know for sure.
Recently the thought of dying really hit home, however. I was getting a replacement drivers license because I had lost mine in the midst of hospital trips in December or January. "Would you still like to be an organ donor?" the DMV employee asked me. "Uh, sure," I said. Always before when I had filled out the card it seemed like an academic exercise for the long distant future, not something that could really happen.
Days with flowers are always a bonus. Thank you for the beautiful bouquet, Fred and Robin!