I think people are afraid to ask me about the cancer these days. That’s kind of funny when you think about how forward and open I have been with all of this. To be fair, though, I suppose it’s possible that they are waiting for a blog explanation? Looking for me to fill in the blanks? I may need to fill them in for myself, as well.
I think that there is usually some kind of grand announcement. Patients get a PET scan or MRI and then a doctor pronounces them NED– no evidence of disease. That hasn’t happened for me. It’s been a little more foggy, so I’m clearing it up for myself. It’s probably time I dragged you into the clearing.
After my surgery in April I was told that my surgeon got clear margins, meaning that as far as anyone can tell she cut out all of the cancer. We (James and I, upon meeting the oncologist and resident) were told that we were “talking about being cured” and that I was “basically cancer free.” Now, the surgeon had already recommended radiation therapy, but that is usually done later (or in place of chemo, like with a lumpectomy). I knew I didn’t want radiation. If my surgeon hadn’t taken so many lymph nodes– like, all of them– then I might have been more interested. However, the lymphedema risks with radiation, along with the cardiac risks associated with radiation, outweighed the added benefit for me. But, back to the wishy washy oncologists who never used the term NED. They strongly recommended chemo to lower the risk of recurrence. Statistically speaking, it does this for many people. I had a previous oncologist do a test on my first biopsy tissue called a Mammaprint. It showed me at a higher risk for recurrence and recommended chemo. Have I mentioned all of this before? Anyway, I never wanted chemo but obviously I did the chemo. Still no one handed me a NED card.
Now, I’ve been working with an integrative oncologist in Az, right? He has done some blood tests. We did cancer antigen tests before surgery (elevated), after surgery (normal), and last week (normal). We also did something called a Biocept test. That test came back at 0. Goose egg. No circulating tumor cells. Still no NED card or announcement.
Here’s the problem: that pesky little thyroid nodule. Technically, it’s cancer. But, it isn’t doing anything. It’s just sitting there. As a matter of fact, it shrank a smidge, even though chemo has no effect on papillary thyroid cancers. I’m basically working at willing it to vanish. The surgeon who wants to take it out is checking on it every four months. Meanwhile, after I went vegetarian all of my thyroid numbers normalized. On paper, my thyroid is healthy. Just don’t look at the ultrasound. lol
So, I’m like 99% NED.
I’ll have another thyroid ultrasound in March. I had a clear mammogram on the remaining breast in December. I’ll have an MRI in April.
They took out my port, which was HELL. I continue my quest to educate the medical community regarding the fact that natural redheads need more local anesthetic. They continue to torture me, only coming round to my side of things (and reading the fucking studies) AFTER they have tortured me. The port removal left a sizable scar. I wish that I had thought to ask them to make me a lightening bolt shaped scar, because sometimes it aches, and I’d like to tell my children that it hurts because Voldemort is nearby. Also, he knows you didn’t do your homework. He’s not happy.
I have not had any reconstruction. I would very much like some of that. However, we got some new insurance this year. Turns out it’s awful and none of our doctors (not a single doctor at Moffitt) are in network. So, I’m plastic surgeon shopping again. I want something called a DIEP, because I don’t want implants and I just want to do this once. Not everyone does it. It’s a difficult surgery, you want someone who does it on the regular. It’s a six week recovery time kind of thing. Maybe later in the year.
My OBGYN wants to perform an oophorectomy— I like saying that word out loud– and I just might let him. It lowers my risk of recurrence about the same amount as taking Tamoxifen, which I am not taking because of side effects and also because I have a genetic mutation that raises my risk of blood clots. I have an appointment to discuss this with him further in June. In March I have an appointment with a Naturopath OBGYN to discuss with her first. I generally find that the naturopath md’s are more honest with me about risks and side effects.
My eyebrows are back. One of them is predominantly grey. My eyelashes are nearly back. Not quite as long as usual yet. My hair looks like I cut it this way on purpose, sort of. It came back very grey and very curly, so, ugh to that. I have colored it and am having a hard time getting to a shade like my natural color. So, no, chemo won’t give you bright red hair. Don’t try it. On a happy note, my pubes came back their regular lovely shade of strawberry blonde. Maybe you were curious, but afraid to ask. Now you know.
I mostly feel ok. I get tired easily. Some days I just don’t have any energy. Some days I can really get a lot done. I take a lot of breaks. I take a ton of supplements, still. They help. I know this because I’m out of two of them and waiting for them to arrive. I’m told that it could take me a year to feel like my old self. My good days are pretty freaking good, though, and my bad days will never be as bad as last year’s bad days.
I think that should take care of most people’s questions. I feel cancer-free. Sorry if I posted links that I’ve posted before. It’s just easier than going into long explanations. I mean, you’d rather read about my pubes, right?