Faith can move mountains Taxol #9
November 15 I had my 9th Taxol. I also saw what I think was the 6th or 7th doctor I've seen at Cancer Care of Maine in the 6 months I've been a patient there. This brought on a very serious discussion about my care. My main concern has been a lack of communication amongst the doctors and with me. I have been asking for about 6 weeks when my next scans will be, what scans will be done, when I'll see "my" oncologist again, and what next steps will be if results aren't optimal. For six weeks I have asked each doctor I've seen and called and asked the nurse multiple times. I usually get a general "relax, everything is fine" type of response. To say I have been frustrated is an understatement. I finally worked up the courage to demand answers. The nurse practitioner I saw listened to my concerns and validated all of the concerns I listed. A cancer patient should not get passed off to a different doctor every week. Questions should be answered in a timely manner. To be fair... I think Cancer Care of Maine doctors and nurses are great people. My frustration comes from the system stretching doctors in too many directions.
After my breakdown at my appointment, Dr. Sinclair called Friday evening and answered ALL of my questions. I will be having a PET scan in the next couple of weeks and an MRI if my insurance approves it. I will see Dr. Sinclair at my next appointment (Dec. 6) and will be able to go over the results then. If results show no evidence of cancer, we will discuss moving on to the next surgery stage. If there is still cancer lurking, I will most likely continue with more Taxol. It was comforting to hear that most likely the kind of chemo I'm on can continue. I am experiencing few side effects so as long as it's working, I am fine with continuing with it.
Overall, treatment 9 has been possibly my easiest round of chemo so far. I can only think of one thing that I have done differently this time around. In the staff room last week, we were discussing tai chi. This prompted me to think about trying tai chi and someone suggested just watching a video online and trying it. After I got home from chemo, I did a 20 minute tai chi video. I have no idea if this made a difference or not, but I can tell you that I never had the full chemo brain that I usually have for a day or two after chemo. All week my thinking has been clearer and my memory has been stronger.
In my not getting questions answered frustration, I've done a lot of my own research through my IBC support group which is facilitated by IBC specialists at MD Anderson. Not all Stage 4 patients have surgery. In order to do surgery, the chemo needs to stop. If there are active cancer cells in my bones (or anywhere else) they could take the chemo break as an opportunity to multiply throughout my body. This, of course, would not be good. Some stage 4 patients never get to no evidence of disease (NED) but their cancer is "stable" (i.e. isn't spreading or growing). For these patients, chemo continues indefinitely and some live rather "normal" lives. Ideally, though, surgery is optimal. Research shows longer life for those who have a mastectomy. So my goal is for that to happen. But, there are many stage 4 women in my support group that don't have surgery and are past the 5 year mark. MD Anderson in Texas reports that more than 50% of their stage 4 IBC patients have a mastectomy. This rate is lower in stage 4 "regular" breast cancer patients. More urgency comes with IBC to remove the breast.
All of these thoughts swirl through my head on a regular basis and the anxiety starts to come out. What if I am never considered "ready" for surgery? What if chemo stops working? What if, what if, what if... I am working hard this week on remembering that God's timing is perfect. This is all out of my hands and I need to trust my doctors, and more importantly trust God, to take care of these big worries.
My friend Jasmine completed her 12th (and final!) Taxol treatment a few hours after my infusion. She made it through Taxol with a lot of her hair still intact, but found out that she will be doing AC (the chemo I started with), so she decided to shave her head. This is a very moving video of this process. My heart goes out to her because I know that this is a really hard part of this disease. I am looking forward to meeting up with her years from now and braiding each other's hair. 💕
You are a warrior and in my prayers you 😍
ReplyDeleteThai Chi is wonderful!!! A very good centering addition to your journey. Can you post the video you watched? That was a very moving video of Jasmine and I love the idea of you two braiding each other's hair. What a sweet thing to look forward to...and you WILL!
ReplyDeleteConstantly changing out doctors can be hard. There can seem to be no consistency, and like you said, trying to get answers to your questions. So many years in the Army, myself, my family, had little to no consistency. But its refreshing to know you found your voice and stood up for yourself. Which says that much more about you, when at a time when you are vulnerable and need your care givers to "look after you", you're having to fight them for answers. Cheer up. Thai Chi does sound wonderful, and I am thankful you had a clearer head this time around. Perhaps it was standing up for your self and getting some answers...that surely relieved some stress. Keep up the good fight. You are in my prayers and thoughts. I put a Tshirt in the mail before I left. (Currently in the UAE for an computer install job.) Cheers.
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