Hi Everyone -
I have been trying to stay in a sunny frame of mind, trying to evoke dreamy spring days. Things have been a little dark the last couple of weeks. I haven't shared much of this with anyone because the news came slowly, agonizingly slowly.
At the end of December, I was admitted to the hospital for chemo and my CA125 that day shot up to 508. The nurse was surprised and had it retested that night. It dropped to 480. I had had a UTI and that can affect it, but usually not such a big jump. It had been 188 in November. I was, as you can imagine, just devastated. Here we go again, I thought, the chemo stops working and we must prepare for another change. I spent the night in the hospital just tossing and turning, partly from the chemo and associated meds and partly from the horrible feeling that maybe I am losing the battle. Why can't one of these chemos work for me?
Generally, I have been feeling so good. I had had such a good holiday season, felt reasonably well and kept thinking that I was functioning pretty well. The increased CA125 was just depressing. That was a horrible night. M and C drove into KC to pick me up the next morning. I waited to tell them any news until we got home, no need to challenge my teenage driver with that kind of news while she is driving down a major highway. (I thought it was a pretty good decision as a mother!) I think some of the hardest times of this entire cancer journey have been the moments when I share cancer news with R and the kids. Seeing the look on their faces when I have bad news is just heart wrenching. But I still think we've done the right thing in sharing all the news - good or bad - with them. They deserve honesty no matter how hard it is for me.
Dr. C ordered a ctscan for January 12 and I had an appt on January 20, so I decided that rather than share information piecemeal I would just wait until after I had seen her. And I really didn't have much news to share, I wasn't sure what was going on. And that was the worst part. For that last two and a half weeks I have been just chewing over the what-ifs, the maybes, the possibilities. The good thing is that this mood spurred me to gather more information on new things going on in the cancer world. I have been looking at new drug studies and trials trying to figure out what might happen next. Wonderful TJ has been helping me, reading over the trials and associated literature to explain what the drug companies or trial researchers are looking for. He has been a great resource not just in explaining the scientific details of the studies, but helping me to determine what my role in each would be and whether or not they would be a good direction for me. (Thanks, T.) At the same time, I was sending the same information to Dr. C.
During all this, Mom arrived on January 1 for a visit. She was able to keep me pretty grounded, I don't know what I would do without her and lucky for me, I haven't had to find out. She helped me to see that things were not as bad as I was thinking and without any information from the doctor I needed to just take each day as it comes.
This last week has been a little crazy. Early in the week, I felt like I was either getting a UTI or had low hemoglobin. A visit in for blood work revealed that what was really happening was that my stents needed to be changed, my creatinine levels were a little high. So yesterday, I had my visit with Dr. C and then went on to KUMed to have my uretal stents replaced. It was a long, long day and everything went really well with that. We'd had 6 or 7 inches of snow Wednesday and had to be at the cancer factory by 7:30am. R borrowed a friend's 4wheel drive (thanks Matt!!) and delighted in being able to drive in to KC in wintry weather conditions. I was anxious about the doctor's visit, but not about getting there. I knew R would see it as a challenge and just find a way to enjoy it, he's such a great guy. So much to love about him!
We had a long visit with Dr. C. The ctscan showed little change in the tumor on my bladder, but it also showed a lymph node that has doubled in size. And interestingly my CA125 is back down to 230. We both agreed that we really just need to ignore the 480 from December. I can do that, I'm Irish, if I just ignore it, it will go away!!
But we do have to look at the 230 and the lymph node. Strictly speaking, this is considered disease progression and calls for a change in chemotherapy. But in the meantime, there is still the vaccine trial to consider. I will have another round of taxol and carbo next week. I can't change therapies now, if I want to look at this trial. And there are other things at work also. I am having some genetic profiling done. This will tell us a couple of things. I will be tested for the BRCA1/2 mutation, tested to see if I am HLA-A2 positive and my most recent slides (tumor tissue) are being submitted to a molecular profiling company. All of this information can be used to guide future treatment options.
The upside is that I feel okay about everything. I am still relatively healthy. The cancer has not metastasized beyond the pelvic area and that means a lot. That means I am doing pretty well. I feel pretty good. I could use more exercise, but I am maintaining a good weight and have a good appetite. Who wouldn't have a good appetite when we have meals delivered twice a week? I don't really have to do much but rest and take care of myself. I do a little housework, the laundry, make an occasional meal. I am glad we don't have a big house, there's less to take care of! I am still knitting and doing a little sewing and still love to read as much as I can. I can't help but remind myself that I've got a really good life. I have my good and bad days just like everyone else and there is something 'normal' and good about that.
So, I am glad to be updating you without having to stop and cry. It's not the news I know you want to hear, but it's the news I have. And I am glad you are all here to listen. Thanks for the lovingly prepared meals, the hugs and calls to check in on me.
Just need to make it through the next 3-4 weeks. Chemo next Tuesday and Wednesday. Three to four weeks for all the test results which will help in determining the next treatment I will take. She's leaning to the doxil again. That worked for about nine months for me last time and the side effects were very manageable. Not great, but livable. I will be sure to keep you updated when I know where we're headed. In the meantime, I will be staying warm by the stove.
Stay warm.
Love,
Maggie
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