So let's see… last I wrote here I was recovering from the mastectomy. I'm too lazy to go back to see what I wrote so not sure if I admitted that I had a super hard time looking at my missing breast. Up until recently, I managed to just see it out of the corner of my eye (and that took a couple of weeks to work up to doing that). But caring for the radiated area demanded I actually look at it.
Oddly enough, I think the radiation actually helped me in that regard. The skin got really gross as my treatment plan needed to involve the skin from center of chest to arm pit to collar bone to bottom of rib cage. (IBC has a nasty way of getting into the skin so we didn't want to take any chances.) So after looking at that gruesome mess for a few weeks, the healed over missing breast chest was a vast improvement!
Which reminds me… tip portion of my post: If any of you dear readers ever have radiation with "aggressive use of a bolus", three words for you… 1) CeraVe; 2) Percocet; and 3) Mepilex.
I had a reaction to what is usually the rock star of topical ointments for radiation (Aquaphor) so doctor suggested CeraVe which was a little slice of heaven when smoothed on. This stuff is creamier than the super thick vaseline like consistency of the other, so it you need not use any pressure (which hurts) when applying. I kept mine chilled for even more relief.
The pain reliever should have been obvious.. but instead of taking as directed on the bottle, I waited for it to go from uncomfortable to super painful (and man did it hurt, not even the first post-mastectomy days hurt like that). Once I started taking it when scheduled, never reached that painful state.
The Mepilex is something you can't get at the store or pharmacy… but can get online for a small fortune but if you have an awesome doctor like I do, she gives it you. It's this dressing that breathes (very important for the healing process) but acts like the missing skin in terms of being a barrier. Even the softest fabric hurt when it touched that area.
Tip portion concluded.
As it was predicted, the pain and exhaustion continued to get worse for about a week after my last treatment. Then it started to turn around. Each day, it hurt a little less and I had more energy. Now, at 10 days out, I feel like a new woman. Being able to comfortably wear a shirt is something I'll never take for granted again. I expect the fatigue to linger a few more weeks but an afternoon nap doesn't mess with what I need to do each day so no complaints.
Let's see… what else? My doctor switched me to a different medication (Letrozole instead of Tamoxifen) to target the cancer cells that grow on estrogen. So far, those pesky heat flashes are far less.
And I started another targeted therapy for the cells that grow on this protein called HER2. That drug is pretty awesome. Before it came along, since HER2 positive cells are super aggressive, it was bad news to find out you had them…. now because of this drug, it is just one more weapon to use to keep the beast at bay.
Personal bonus is there's a made for TV movie about how the drug was discovered and approved starring my personal dreamboat, Harry Connick Jr. So it's his face I see in my minds eye when I give thanks to the guy who invented it at infusion time. (That's another tip… every scan, treatment, etc... give thanks it exists even if uncomfortable/awkward because when in a place of gratitude it makes it all so much easier to bear, it's like magic!)
Also while I was neglecting my blog, I also added to my medical team the IBC specialist in Philadelphia. Because he has treated primarily my kind of cancer the last 20 years, he's seen significantly more patients than my local doctors given this disease only represents 1-5% of all cancers. Plus, he's researcher so is the first in line for new information and technology. With the latter advantage, he's been having me do these tests called "Liquid Biopsy". It basically is a great way to not only know what medication is likely to work on my cancer but let's us know a tumor is about to happen so we get a jump on the sucker.
Last two liquid biopsies came back negative for new tumors existing or about to happen. The last scans showed there is still spots in my spine but they look like they're super slow growing or dead (yay chemo!). So I feel like the next few months are going to be relatively easy with just the infusions every 3 weeks and the daily pill (barely any side effects). So I'm sliding in a really fun family vacation before the results of the next test will come back. Thinking about in late June and early July finally seeing Grand Canyon, Great Sand Dunes, Moab, Zion, Great Salt Flats and Vegas (Baby!)… super excited.
That said, this last week, one of the women in my online support group died. Kore was a loving mother, wife and daughter. She touched my heart even though our communication was limited to just online. And from the outpouring on FB from the people she knew in real life, her spirit was indeed accurately projected online. I've cried a few times for her… and for me.
It was also a sad reminder of just how deadly IBC is and how fast it moves once in a vital organ that can no longer be treated with what is currently available… my take away was it makes TODAY that much more precious. TODAY is the day to see the beauty and feel the love all around you. Letting the fear of what may happen a few tomorrows down the road literally robs you of that.
It also feels like a disservice to Kore not to embrace and enjoy all that the day has to offer. So on that note, I'm going to go to church now then make an awesome brunch for my family.
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