Quick … without saying names, how many of you start singing when you read my title? La di da di dee, la di da di dye … Well some of you have asked for an update, so I will bring you up to speed. I have been silent because I have been seriously ill from the chemo this time. First I had all that painful intestine stuff and vomiting. Now I have a nose that has blood for snot, a voice that doesn’t work because the mucositis in my throat is so bad, open sores under my tongue … add that to the already burgeoning belly on my front and I’m miserably sick and stuck like a bug on its back. And then there is the nasty little low-grade fever that has plagued me since my last taxotere last week too. Yeah, I’ve just felt like a real barrel of laughs here these days. My throat has been so irritated that if the slightest little thing hit it, like spray to numb it, it would set me into a paroxysm of gagging, but thankfully I didn’t vomit any more because I can’t even imagine what that would’ve felt like as raw as my throat has been. A week later, the tongue blisters are gone, the throat still very raw, and the nose still attaching huge scabs to my sinuses, making it hard to breathe in addition to being messy and nasty.
Thursday I saw Dr Headley. We drew labs and I got the results before I saw him Thursday. This is another reason I haven’t posted. The news was not good and I needed to process. However, it was not as bad as I had expected. I figured I was finally out of options and it was time for hospice. My CEA, which at its highest a year ago was 53; now it is 109! And my CA 27-29 is nearly 400! That’s the highest they’ve ever gone and that was with two rounds of chemo on board.
I am going to take a pause for the cause here and explain to my readers who may not be alternative medicine fans. This is a complaint I often hear about alternative medicine practitioners. “I spent tens of thousands of dollars and didn’t get well.” Yup, been there done that. BUT, read the last paragraph I just wrote. I have had friends disapprove of my alternative choices … some of them even disappearing from my life when I need them most … because they don’t agree with my choices. Like it’s about them? How totally self-absorbed. And just because an oncologist is wielding a cytotoxic poison doesn’t make him any better at curing cancer than the naturopath who does it with nutrition and immune support. There are no magic bullets in either camp y’all. I know I haven’t said that little repeat-after-me in a while, so why don’t we all refresh our memories: There are no magic bullets.
Anyway, I have pretty much decided to ditch Taxotere and see what else he has up his sleeve. I will get this particular batch of side effects again if I do more Taxotere. This is a serious quality-of-life issue. Not interested in extending my life by two months only to spend that entire two months in bed miserably wishing I were dead. He already mentioned Adriamycin and Cisplatin. But the Caris test I had done on my liver biopsy already indicated that these two drugs would not be effective for me any more. I mentioned that to him and he had overlooked that, so he concurred. He is not totally convinced the Taxotere isn’t working because, as he said, “If this drug wasn’t doing you some good, why didn’t you to ahead and obstruct? You were right there at it.” And I was. And now my gut is open again and things are moving. Still weighing in at 135 with probably all but about 5 pounds of it being pure fluid from my belly. So he drew a Circulating Tumor Cells test and I will see him again Thursday to reassess.
Now I have my energy healer, Kris Kraft, coming to work on me on the 26th and funny thing. He emailed me somewhere between my first and second rounds of chemo. He told me that he was receiving that this chemo was doing me more harm than good at this point and would I consider stopping it? At the time, I had not gotten the mucositis, so I told him I couldn’t make him any promises, but that we could discuss it. Then I had my second round and BLAMMO! It all blew up in my face. Kris also says that this visit is going to be very successful … from his lips to God’s ears. Because it is looking like I may not be able to do chemo after all. And I felt so good doing it last time … the same drug … and Kris worked on me then between the first two doses. I breezed through. My oncologist ragged on me about it. I told him that I felt better than I had felt in years (last summer) and chemo didn’t usually do that. He said, “I keep telling you if you treat the cancer, you’ll feel better. ” Well now I can press that BS button … the way I feel right now is more like the way chemotherapy makes you feel. In fact, I haven’t had mucositis since my stem cell transplant back in 1999. Until now … and this was a very low dose. So if I can’t tolerate low doses, really uncertain about any chemo drugs now. I am still on the Tamoxifen, but it will be another month or two before it starts working.
So unless something changes between now and next week when I see my oncologist, I probably won’t write much. I am so weak s0 I am trying to build back up some strength. Walking begins today. I say that, but what we’re really talking about is up and down the hallway!