Sure, when you look at the whole picture, this really sucks. Getting cancer at age 44; having ALL THE TREATMENTS with their associated side-effects that I'm still managing, and always will be; all the time and the money spent on trips to medical appointments (I'm up to 171 appointments; no impact on my day-to-day there!); the ever-present fear of recurrence or metastasis... But on the whole, I handled treatments well, and so far, treatments are working (fingers crossed ;)).
I haven't blogged for three months, and in some ways a lot of medical stuff happened in that time, but in other ways, not much happened at all.
I've continued with my clinical trial, and my suspicion was confirmed. All along, I've felt that I was in the control group. Basically, the immunological tests were all showing no response, so I knew that either I had the control or it wasn't working. This time, after giving the booster, the oncology nurse left behind the bag that the injections were stored in. It clearly read "Neuvax-CTRL." So while I "knew" I was getting the control, I didn't really *know* it until last month. And I still have to go in twice every 6 months to give 8 vials of blood. It's a little harder to do that, but I know that control groups are also important in clinical research, so I'll do it.
The scariest thing that happened was in late October. After my final reconstruction, I had to be very careful to not move my implants, so I really didn't touch my new "breasts" for a long time. But I was having lots of stiffness on my radiated side and I feared that the scars were sticking, so I got permission to begin some gentle massage on the scars. It was then that I found a lump in the exact same spot that my original main tumor was located (10:00 on my right breast). I told myself that it was likely lumpiness from the surgery--I even called my oncologist's office, who said it was probably post-surgical changes. Because they didn't know what my breasts felt like prior to surgery, they wouldn't examine me to be sure that's what it was, though. I had to see my plastic surgeon--who couldn't get me in for weeks. Finally, after several appointments and "it's probably nothing" comments, I ended up with an ultrasound that proved that it was, in fact, just necrotic fat that did not vascularize when Dr. Sterkin did the liposuction and injected fat over the implants. Who would have thought that the phrase "dead fat" would bring such joy?
I've been faithfully wearing my lymphedema sleeves and gloves day and night, and the lymphedema has not gotten worse. Unfortunately, it hasn't gotten better, either. In addition, I was somewhat babying my right side and lost a lot of strength in that arm, and also had a lot of tightness post-surgery, so got referred back to Audrey, the OT. I'm getting stronger, and have a ton of exercises for strength and stretching, and have been discharged from OT again (after 2 months). But Audrey has said that I'll likely need to wear a sleeve the rest of my life since the swelling hasn't gone down in 5 months.
The actual sleeves are a bit more attractive than the makeshift one I originally had.
However, I might have to invest in one of the cool sleeves that LympheDIVAs sell. Greg thinks I should get the cyborg one:
All in all, things are good. I'm still vaguely annoyed with how tired I am--though at least some of that may be due to age! And while the Femara is not as bad as either Arimidex or Tamoxifen, I do still have joint aches. I also had a bone scan, which showed no signs of osteoporosis, but some pretty bad arthritis in my right knee. I've pretty much given up on running, but am trying to walk (at least 10,000 steps per my FitBit) every day. I'm considering doing some sort of a gym thing--which came to mind when I realized how weak I'd gotten. Considering yoga, too, although I'm not a huge fan of it yet. Open to suggestions of fun ways to stay fit!
Finally, we had an absolutely magical Christmas. All five of us spent five days in Puerto Morelos, Mexico. The sun, green things, warmth (magic for my arthritis!), and family time was perfect. One of the coolest things was doing yoga in a pagoda in the ocean. If I could do yoga that way all the time, it would definitely be my exercise of choice! I mean look:
The trip was one of the many Good Things that cancer brought. Pre-cancer, there is no way I could have justified spending that much money on a vacation. And we would have missed out on those five amazing days. The memories made on our trip far exceed any joy that would have come out of making an extra mortgage payment ;).
So on this New Year's Day, 2017, I resolve to say "yes" more often, and to make fun a priority. I would ask all of you to do the same. Don't wait until it's forced on you. And if you have something particularly fun in mind, feel free to ask me to join you. I'll try my best to say yes.
