I then showed him how I reacted to the dye in the tattoo on my ankle and he said that my reaction, in combination with my low platelets and how thin the skin on my irradiated side is, would make him recommend that I do *not* get my breasts tattooed--at least nothing as major as I'd hoped. If I wait another year or so, I could try to get nipples (or 3D nipples) tattooed, but probably nothing more major than that. I really saw no reason to get nipple tattoos (not like they'd be functional or something I'd want to show off like a cool design) until I started going to the gym and pool. I guess it would be nice to feel a bit less awkward when changing in public. I don't know--I'll see what happens in a year.
This week I had my 3 1/2 month follow-up with Dr. Shah. Overall everything seems good. Bloodwork is all normal except platelets (holding steady at 85K). She was happy to hear that exercise seems to be helping with the joint pain. (To be honest, I'm happy and surprised about that, too!)
I did decide to drop out of the clinical trial I had been doing. I'm feeling some guilt about that. However, the combination of the effort to get 10 tubes of blood from me at two different times within a week, plus my not wanting to be knocked on my butt for 3 days following the injections (severely impact my triathlon training), and knowing I'm a control and have made it through the majority of the clinical trial (thank you, Biostats, for teaching me about Kaplan-Meier curves so I understand my participation is not completely lost, even after dropping out), helps.
My trigger thumb (side-effect of Femara) seems to be getting worse and is causing me pain, so Dr. Shah recommended getting a cortisone shot. Still need to schedule that--thinking I'll check with the orthopedic doctor my mom used for both her knee replacements and carpal tunnel syndrome surgeries (Dr. Rory Wright). Add another doctor to the mix!
The experiment to wean off the compression garments is having mixed results. I think it was going well when I wasn't wearing them most days (unless I felt my finger swelling). But then gardening season started and every time I'd garden, I'd get swollen, so I wore them more for that. And many doctors and therapists say you have to wear them while exercising. I actually notice more swelling AFTER exercising, and it seems I am always either exercising or it's the day after exercising, so I'm wearing them a lot more again. I did get two new sets, and realized how stretched out the older sets had gotten. I also read a post on how alcohol is bad for lymphedema. Not that I drink a lot, but that plus the recent article about one drink a day increasing breast cancer recurrence kinda sucks! Nothing like a little guilt about my one drink a month.
Another relatively new side effect I've developed is restless legs--anytime I'm still for awhile, but especially when I'm trying to fall asleep. Dr. Shah recommended trying a calcium supplement, so I'll give that a shot.
The biggest issue I talked about with Dr. Shah was my brain fogginess. Of all the side-effects I'm having from treatment, it's by far the one that is bothering me the most. The worst part is that I feel like it's getting worse, and not better. I'd chalked it up to chemo-brain, which is supposed to improve following that first year after treatment ends. I find myself really struggling with names and with words in general (I can give you a long description of the word I'm looking for, but can't come up with the word). And recently there's been a LOT of people saying, "remember when..." and I honestly canNOT remember what they ask about. It's annoying and a little scary. Dr. Shah asked about brain exercises/games and I told her I do 7 Little Words every morning and have recently returned to playing Words With Friends (thank you to those who play with me!). She said that was good, but I should add math games--like Sudoku. I don't like Sudoku, so Greg suggested KenKen, which is kind of fun, but I wish there was a social math game like WWF. Anyone know of one? The other thing that Dr. Shah recommended was a visit to a Neuropsychologist to determine if my brain fogginess is really chemobrain, or something else. This made so much sense, as I had just read a couple interesting articles that supported the idea of it NOT being chemobrain. My friend Dawn posted an article about breast cancer survivors developing a form of PTSD--usually about a year after treatment ends. And then I found another article about how brain fog after breast cancer treatment might be caused by PTSD and not chemo. So I agreed to a four hour evaluation appointment with a neuropsych next month. On the one hand, the last thing I need is one more appointment, but I am determined to do whatever it takes to maintain as much quality of life as I can. So I'll do it.
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And finally, the biggest change in my life lately--and the inspiration for the title of this post: Team Phoenix.
I am now 6 weeks into the 14 week training of Team Phoenix. I will complete my first (sprint) triathlon on July 30, 2017, and any of you are welcome to come meet me at the finish line. It starts with a 1/4 mile swim in open water, then a 15K bike ride, and finally a 5K run (or walk). I have already ridden 15+ miles on my donated Trek bike; I have done 5K's before and am C25King my way back to that, and I am desperately trying to learn to swim in a more effective manner than I have all my life so I can do that part.
The exercise plan has resulted in some more muscle aches, but it has done amazing things for my joint aches and flexibility. I feel STRONG!
Still, the best part of Team Phoenix is that I'm doing this with 56 other female cancer survivors (most breast, but not all). Some of us started w/o knowing how to swim, or not having even ridden a bike for years. Some started as previous triathletes. But we're doing it together, with the most amazing team of coaches possible--including Team Phoenix alums. I cannot put into words what a powerful experience this is, and if you are a cancer survivor in the Milwaukee area, you need to do this next year!
The support for Team Phoenix is amazing and I want to give appreciation to the organizations that donate.
*Wheel & Sprocket loans us brand new Trek hybrid bikes (which we can buy at a discount after the triathlon); I've named mine Fawkes
*Land's End gave us each a swimsuit (the one I got FITS ME as it's a tall one)
*One Step gives us a discount on custom-fit running shoes (I can't believe how much difference it makes to own "good" running shoes that correct for my inward-turned knees)
*The JCC gives us a free membership the duration of training (so I can practice swim, but also could use the treadmills and stationary bikes on rainy days)
We travel all over SE Wisconsin for practice twice a week and to see trails and parks that I didn't know existed.
It is tiring and very time-consuming, but I'm dragging family into practice with me so I get to see them. If anyone wants to bike or run with me--or help me figure out swimming--let me know. I'm determined to do this, and to set myself on a path to continue with at least some of the activities. There's a pretty active TP Alum biking group!
And so I am, slowly, rising (like a Phoenix) back to my old self--or maybe, in some ways, a better self. All I have to do is flip back through my blog entries to see how far I've come. Thank you all for supporting me.
