Catching Up

Wow. I didn't realize it had been so long. I guess that's the wonderful thing about it; Life went on.

I'm settling into my new job. A new semester is in full swing with my first job. Family life is as busy as ever, and I'm wholeheartedly trying to live up to my promise to make the most of each day.

In case you are wondering, my parents are doing well. Bob is going for his follow-up visit in a few weeks. It doesn't seem like CLL is interfering with his life at all. Mom started chemo (daily by pill) and her platelet counts are finally down. Let's hope and pray they stay that way. She handled side effects well and is sticking to her chemo regimen. Nothing gets my momma down! I recently joked with Dr. Kotz that Cape Fear Cancer Specialists ought to name a wing after my family with all the business we've brought them.

My daughter had a rough stretch of illness; a cold that morphed into pneumonia, followed by back-to-back UTIs/kidney infections and 4 different antibiotics. We're headed to Chapel Hill for a renal ultrasound and a visit with her surgeon. He wants to be sure that nothing's gone wrong with her duplicated renal system. Please send all your positive vibes and prayers this way. We're hoping to hear nothing more is wrong.

As for me, there's still the pain issue... and some crazy thing that's happened to my hand twice. I'm really good about wearing my compression sleeve and that seems to keep the lymphedema under control. I wasn't pumping for awhile (daily pumping hurts the little bones in my hand), and the sleeve seemed to be enough. That is, until one Friday when I was cooking dinner. I looked down at my hand and it was grayish/white (like there was no blood at all), cold, and two fingers were completely blue. I immediately took my sleeve off, but it took a couple of hours (yes, HOURS) to get my hand to warm up and not look like it was about to fall off. It was still pale the next morning, but nothing like it had been. My physical therapist, who returned my text at 9pm on a Friday night (!!!! wow, right?!?) said she thought it could be a circulation issue. Luckily, everything resolved and I was ok. 2 weeks later, it happened again. Not nearly as severe, but man is it crazy to look down at your hand and it's not the color it's supposed to be!

The pain issue is still prevalent. I have some pain everyday, but I can usually handle it without much difficulty. There was a week in early January I thought I might lose my mind. I hurt so badly. I would joke that it was faster to name the body parts that didn't hurt rather than the ones that did, except it's just not funny. More recently, I've had some bad pain days, but they are interspersed with better days. I'm managing. Dr. Kotz took me off the Tamoxifen for 3 weeks to see if that was the cause of my pain. Musculoskeletal pain is a known side effect for most of the drugs in its class. In a way, I was hopeful the pain would completely resolve and we could just switch meds and be done. I say "in a way" because not taking the tamoxifen is practically as scary as taking it. If I don't take it, the cancer is likely to come back. If I take something else, I risk brittle bones and a lower efficacy rate. But taking it could've been the reason for all the pain (and other side effects). In my case, the pain didn't go away. Now I'm back on tamoxifen and I still have NO answers. Great, right?!

Dr. Kotz has recommended a pain management clinic. I always thought pain management clinics were for people hooked on pain pills who needed other alternatives to manage chronic pain. Turns out, that's not entirely the case. Dr. Kotz explained that the field of pain management emerged from anesthesiologists who wanted to use the pain-free benefits of anesthesia without the effect of sleep. Now, pain management clinics offer a unique blend of mainstream medical approaches with complementary approaches, like acupuncture, massage, vitamin C infusion, chelation therapy, etc... Dr. Kotz, a scientist to the core, seemingly a man who doesn't believe in it unless he can verify it happened in a lab said that he's sent patients to this clinic he was sure they wouldn't be able to help, and they have helped. So, I'm very hopeful!

In terms of the re-reconstruction, I'm still on the fence. I'm so unhappy with how my reconstruction looks and feels. I can't stand being uneven and lopsided. The spasms are really terrible. But the thought of more surgery weighs on me heavily. I'm trying to be patient and just see what happens. I'll have to keep you updated!

I will end this on a happy note. I've been working out with a trainer 2x/week since October. Her name is Angie Oakley (and I hope she doesn't get mad I put her name out there, but if you need a trainer, you need to check her out!). Angie is so invested in my journey to build strength, lose weight, and generally get well. I can't begin to rave about her enough. She watches me so closely, she can tell when I'm hiding the pain. She works hard to find alternatives to exercises I can't do so that I get the same benefits. She has been patient and motivating and encouraging. I adore her! And guess what.... I've lost inches (had to have 4 pairs of pants altered significantly because they were about to fall off me), the numbers on the scale are dropping slowly, and I am definitely stronger. Remember when I said I couldn't open a bottle of water on my own? I can totally do that now! And more. So many women in my position will tell you how hard it is to build strength and lose weight after chemo and radiation and surgery, surgery, surgery.... But I'm here to tell you that progress, though excruciatingly slow, is POSSIBLE. And, that there are people out there who genuinely care and are invested in helping you reach your goals!

I'll post again soon and let you know what's going on with pain management once it starts!
Ciao for now!