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My mood/emotions are pretty erratic these days. I'm sure most people's are, considering how long we've been in this shit position with Covid. Mine fluctuate depending on how physically good I feel and the most recent news and updates coming from my doctors. I've started to write this blog three times over the past week...starting with a very depressed version after my radiology consult, which a few days later was a pretty happy and upbeat version as I started to feel stronger after surgery (and not take 23 minutes to walk ONE MILE), and now today's version...which, unfortunately for you, is coming from more of a downer mood again after a call with my oncologist this morning.
So let's just start with my general state of being which is that I'm really, really, really tired, like EXHAUSTED deep into my bones tired where sometimes I lose time in my day because I'm not exactly conscious or engaged in the day enough to be aware of what is happening or the time that is passing. I assume this is MOSTLY physical as my body continues to recover from chemo and surgery, but exacerbated by the ever-changing Covid status in Santa Barbara which ignites my fear and confusion, complexity of decision-making and SHEER BOREDOM as we continue to stay safer at home with the kids doing virtual school and not a lot of newness, excitement or adventure in our days. I am SO DAMN TIRED. And at the same time restless and antsy to be done with active treatment. (Oh, also, it's Monday and getting back in to virtual school after 5 days off has been ROUGH.)
On the physical recovery side, I think things are going pretty well. I had been struggling more than I thought I would with my very obviously explicit in-your-face misshapen body (meaning living with one boob), but now that I am feeling physically stronger and somewhat capable again, I haven't thought about it as intensely or consciously. I mean, I look weird. Clothes fit me weirdly. I'm sure when I'm out walking people are confused at the shape of me. But I think I've moved beyond my initial shock and depression at being deformed...likely with some help from the books I'm reading (your body is your biggest ally in health!) and my oncology therapist who suggested working to get back to being grateful to my body for getting me through everything it has been through during cancer 2.0. I will eventually need to decide if I want to get reconstruction (if it is determined that I am physically able to get it.) Once you've had radiation, especially on such a large span of skin, implants are no longer an option so getting a second boob would require a 13-16 hour surgery to use my own tissue from my stomach to reform the shape of a breast, and then 3-6 months of physical recovery. I'm not sure I'm into doing that after a full year of cancer treatment...for the second time. So that will be the debate next Winter, I guess. Thankfully I don't have to think about that for many months, but I do need to find ways to feel good, comfortable, confident in my body again.
My hair has also started to grow back in so I've got like 1/4 inch of growth all around (although I still wear a hat bc I still look sick/bald/weird) and my eyebrows have mostly grown back (I assume thanks to this very expensive but I guess effective brow serum called Vegamour.) I am able to walk for exercise, and am working my way back up to a normal speed and distance (probably more aggressively than my doctors want) and started doing the post-surgery stretches for my arm and chest at the week three mark last week and can already see that I've made progress, although my left arm is less stretchy by about three inches than the right from almost every angle.. I start actual physical therapy tomorrow which I think will continue to correct that.
I feel pretty good, outside of being so damn tired, but for some reason my white blood cells took a dip with my last bloodwork since surgery so I am hopeful that's because of the effort of mending the skin, but I'd like them to get back to the normal range asap. My platelets also continue to be low. Maybe this is contributing to how tired I am.
The call with my oncologist this morning was about "lifestyle changes" or in more direct terms how to lose weight. My oncologist is so nice, but he point blank told me "everything we're doing from this point forward seems to work better when you're smaller." So I have to figure out how to live my life from the point of view of optimal health...which is depressing considering I think I have been living my life pretty healthily. I started reading this book called Anticancer and have another one in the queu called How Not to Die that go deep into healing nutrition, physical activity and psychology. I'll need to cut down on grains and meat, and increase beans, berries and green tea. I need to insert more exercises into my routines to build muscle mass (which they tell me is going to be more difficult considering everything they're doing to shut down my hormones), and focus on mindfulness, connection and stress-reduction. It's overwhelming to even think about, so for December I'm focusing on reducing grains, eating berries every day (when I can) and starting to add in green tea and flaxseed to my diet. I renewed my Calm membership, which I had just cancelled earlier this month, and I'm starting to think about which exercise routines to adopt to add on to what I'm already doing.
It also makes me feel super depressed, conflicted, scared, guilty, mad to be thinking about all these changes because I feel like it feeds into the idea that I have been doing something wrong and caused my cancer (and recurrence). That is the worst part of cancer and the worst part of humans and I try to avoid it - people trying to figure out what YOU did to cause your cancer which makes you different than them and reassures them that they won't get it. Sigh...For the record, I didn't do anything. And, if you're thinking this, you CAN get cancer. (Well, and if you are thinking this, maybe you should stop reading my blog...)
Phase 3/Radiation is also going to be its own mini-marathon. This week I have to get the right/non cancer expander which they put in and made smaller after they took out the old implant, shrunk even more than they did in surgery so that the radiation beam doesn't hit it. Next week I'l have my CT radiology mapping where they essentially make a holograph of my body in the radiation position to program the radiation machine to shoot the beam into the right area, and to shut off if my body moves position or changes shape. I'll have to practice holding my breath (which I'll do every session) so the radiation doesn't hit the heart or lungs. Then December 16th we'll have a dry run of a session (without radiation), and actual radiation starts December 17th. I'll have 33 rounds, 28 to the chest wall and armpit/lymph area, 5 to the incision scar, and with the December and January holidays, I believe this takes me to February 4th. Sessions will be every Monday-Friday starting at 45 minutes, but once we get the routine down they should be closer to 20 minutes. I guess about midway through I might start blistering like a bad sunburn...and of course there are all these long term side effects that sound terrible. Whatever. Again, I revert back to being grateful I have so many treatment steps to get rid of the cancer once and for all. But, also, it takes a lot of endurance to get through all the steps, and I AM TIRED. :(
What else is on my mind????? Hmmmm, well Christmas obviously. And the Supreme Court case on the ACA...wondering why we suck on healthcare access in this country....a little disappointed radiation is running into February because I had hoped to be able to do something amazing for my birthday in January. I feel like I've earned it. The Covid vaccine. Wondering why it's so GD hot in Santa Barbara this late in the year (especially when we had a week or two of delightfully brisk weather and were able to use our fireplaces...) Happy to have some TV back (shout out to Greys, This is Us, and a Million Little Things...)
I think that's about it. I don't have anything really inspirational to share, unfortunately, and realize this is a bunch of words about me that are probably boring and TMI. If you made it this far, thanks for reading. Here is something I copied from the Barre3 page...it's true. Whatever state your body is in, give it a big old thank you for being your ally on this adventure and taking you this far, you never know when you are going to look back and miss the body you weren't thankful for. 💗
Sherri
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