Well, it is March 9, the third anniversary of the day I was first diagnosed with breast cancer.  It has become my tradition to do a video blog on my cancerversary, so here it is.  Thank you for sticking with me for three years.  Whether you are following this blog because you are a friend or a relative or yourself a cancer patient, thank you so much. Writing to you all has helped keep me sane. So far.

Stupid thyroid

                Well, when I last wrote here, we were hoping we had found a breakthrough in the mystery of why my hair isn’t growing back.  I mean, it is about 2 ½ years since chemo ended, and I am still bald.  Bald enough that strangers stop me in the supermarket to compare notes on how we got bald.

We had hoped that we had found the culprit in my case:  a lazy thyroid, possibly because it had accidentally got nuked while we were deliberately nuking the lymph nodes nearby.  This would have been a relatively easy problem to fix.

                I am very sad to report that my blood test results are back, and my thyroid numbers are perfect. So were all my other numbers.  Even my cholesterol, which I am the first person to admit, is unfair as hell, given what I eat.  I am healthy as a horse.  I mean, if your horse has breast cancer and mysterious baldness. I should be happy about this, I know.

                The next step, apparently, is to talk to a dermatologist.  My doctor suspects I was just going to be an old lady with thinning hair, anyway, eventually, because of genes, and the chemotherapy just speeded up the timing of that.  I have my doubts, since all the elderly women ancestors I can remember had plenty of hair.  But I will go talk to the dermatologist anyway.  I suspect he will simply recommend Rogaine for Girls, which I rejected a year ago because of the potential side effects.  Am I desperate enough to try it now?  I don’t think so, but ask me tomorrow…

                I do think all the oncologists out there should stop telling women that their hair will definitely grow back after chemotherapy.  Yes, it usually does.  But not always, and I have now heard enough comments around the Internet and at the supermarket from women whose hair didn’t grow back, to know I am not alone in my shiny baldness.  Researchers, are you listening?  Saving our lives is Priority One, for sure.  But if you want to take a crack at the baldness thing, there are a lot of us out here who would appreciate it.

Apparently healthy but still bald. Where is House when you need him?

                It’s been six months since I updated this blog. Frankly, nothing has been going on, cancer-wise, I am happy to say. But it’s the time of year when I tend to have a bunch of medical tests come due, so I wanted to let you all know that it seems to be going as well as it possibly can. And another thing is making me very happy—we may be on the verge of solving a little medical mystery that has had my crack team of cancer doctors puzzled for some months now!

                So, I’ve had a bunch of tests.  This is never fun. For each one, my blood pressure jumps and I get the inevitable “scanxiety,” as others have called it. You imagine all kinds of things while you are sitting half-naked on some doctor’s exam table.

I had my nasty breast MRI in December.  Nothing wacky was found.  This is one of my least-favorite moments of the year, for a couple reasons.  For one thing, the MRI is inside one of those large, extremely loud and clanky tube-shaped scanners, and I am claustrophobic.  You also have to remain perfectly still for more than 20 minutes, while not thinking about claustrophobia or the fact that your nose itches and you can neither sneeze nor scratch it or they’ll have to start over.  I generally end up frazzled to the point where, when it is over, I barely make it to the car before I burst into tears.

For another thing, they have to inject you with “contrast,” and this means they have to give you an I.V. When I had my I.V. for my colonoscopy a few months back, it took them six tries to find a vein, and I was black and blue and crying by the time they were done. But when I mentioned my lack of viable veins to the person getting me ready for the MRI, she decided to bring in reinforcements. She called in a nurse they referred to as “the vein whisperer,” and damn if that woman didn’t find a gusher with one try, and painlessly, too.  I want her to be my nurse from now on, please.

                Then, after Christmas, while on vacation, I got sick with a basic head cold, and a few days later I had serious problems breathing. It turned out I was having a severe asthma attack.  I had had asthma as a kid, always allergy-related, with one notable flare-up once a few years ago. I didn’t realize a cold could set it off, and at my age.  Live and learn! In the process of figuring out why I couldn’t breathe, they had to rule out other more scary stuff—particularly pneumonia and metastasized breast cancer. It was a scary hour or so while waiting for the X-rays to be looked at, but in the end they were all negative.  No tumors in these lungs!

                Then, when we got home to Maryland, just because it was the beginning of the year, I had my regular appointment with my OB-GYN.  Again, all good.

And today, I had my annual appointment with my radiation oncologist, who seemed absolutely delighted with how things are going, now that we are two years out from the end of treatment. It was she who had told me, in 2011 that she would never be telling me I am “cured,” but that the best we could hope for was a long, long remission. But remission we have! She was really happy.  “This is good,” she said.  “This is really good,” and she hugged me.  And she was very, very impressed with the way the new boob turned out. “It’s really good,” she said.  “Really good.” When you see your oncologist that happy, it is more reassuring than I can say.

                And maybe we made some progress figuring out why I still haven’t got my hair to grow back!

                All my many doctors (I have six now, if I didn’t forget anybody) have agreed, it is strange how poorly my hair has done. Only about half of it came back after I finished chemo, and that was two and a half years ago.  This is not how it is supposed to go. I still have a big bald patch on the back of my head, and it’s pretty thin on the sides, too. In the morning, when I wake up, I look interesting, and not in a good way. My youngest, Matt, enjoys sculpting my hair into various amusing shapes with his hands. One day last week, I woke up looking like the Sydney Opera House.  My doctors have been sympathetic, but they are much more worried about me being healthy, than about me being attractive. Given the problems I could be having, I shouldn’t be whining about having hair like my Great Aunt Em when she was in her eighties. No, I should probably be thankful to be healthy and if my hair was gone entirely, well, things could be worse.

                Of course, the hair thing bugged me even though I was supposed to be all about life and health, and not about appearance. Once in a while, you catch a view of yourself from a mirror that shows the back of your head, and yes, appearance DOES matter.

                So today, one of the nurses in radiation oncology was taking notes on me, and she asked me how the Tamoxifen was going.  I told her I was seriously considering stopping taking it, even though it is supposed to be keeping the cancer at bay, because I was blaming the drug for my achy hands and achy knees and ongoing baldness. “It makes me feel old,” I said, and I had been spending considerable time thinking about quality of life versus quantity of life. I expected her to take me to task, and remind me—as others have done—about how the benefits of Tamoxifen outweigh the risks for the vast majority of people like me, etc. etc.

                She stopped me in my tracks.

                “Achy joints.  Alopecia. How is your libido?”

                “I’m sure there is some libido around here somewhere,” I said, and she laughed.

                “Has anyone ever tested your thyroid levels?” she asked.

                “No, not as far as I know.”

                Well, it turns out that an underactive thyroid can cause swelling and pain in joints in the knees and the hands.  And it can cause hair loss.  And it can cause dry skin, and weight gain. I have all of those. I was gobsmacked. Why hadn’t anyone asked me this a year ago?

But why would my thyroid be slacking off all of a sudden?

                My radiation oncologist, who thinks the nurse is on to something, explained that I had had a lot of radiation to my upper body in 2011. Some of it was deliberately pointed at lymph nodes near my thyroid gland, because cancer cells had spread to a bunch of lymph nodes, and we were trying desperately to wipe out any that were still out there. The thyroid may have taken a little friendly fire, which can reduce its hormone output, over time.

So the next step is another blood test—can I have the vein whisperer again, please--and if it turns out my thyroid is underperforming, I have to take…more pills and probably for the rest of my life! But if it means my hair grows back and I lose weight and my knees don’t hurt, I for one will not be complaining.