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I have been continuing to transfer my old blog posts over to the new site, but it has been a slow process. I'm not sure if it is still the radiation after effects, the new medication I recently started, the lymphedema that turned up in my left arm, and all the appointments that came along with it, or if it is something else entirely...but I have been feeling extra exhausted lately.
Here's a quick recap of what's been going down since my last post. If you follow me on social media (facebook/instagram) this is old news, but after radiation, my left arm- the side at risk for lymphedema due to having lymph nodes removed- started to get pretty painful and my mobility was also being impacted. I continued to do my previously prescribed exercises, but during the NIH visit and plane rides to and from Maryland, I noticed swelling and more pain in the arm than usual. I knew this was a bad sign, so I got in to my occupational therapist and lymphedema specialist team right away.
Long story short, I was diagnosed with lymphedema and treatment commenced. I was scheduled for appointments 3x/week with the team, prescribed more exercises, received manual lymphatic drainage massages, and was taught how to wrap my arm to get the swelling and pain down. I was pretty bummed since I thought I was finally done with so many appointments, but that was no longer the case. I just finished my 8th appointment on Friday, and luckily I won't have to go to any more appointments for about a month.
Luckily, my case was pretty mild, and the swelling and pain went down quickly with these treatments. I have since been fitted with a compression sleeve and glove, no longer have to wrap my arm and keep it wrapped for 23 hours per day, and I feel like the symptoms are manageable. Unfortunately, lymphedema doesn't ever really go away, but it can be managed, and the symptoms I was having a couple of weeks ago, are pretty much gone now. I also have more tools for if symptoms come back. I have exercises, self massage techniques, and wrapping in my corner. For now, I will continue wearing my compression sleeve daily as prevention and symptom management, and doctor's orders. I much prefer the sleeve to wrapping because I can take it on and off easily and it doesn't take 15 or more minutes to do. It also fits comfortably under shirts and is basically invisible since it is flesh colored.
I started the aromotase inhibitor medication I mentioned in my last post, "Let's recap shall we?" My oncologist started me on Anastrozole last week, and so far it has been going ok. It makes me feel a bit off, and by off I mean, fuzzy in the brain, tired, and my joints are aching worse than with Lupron injections alone. Oh joy, but hopefully these symptoms will mellow out as my body adjusts, and they were all listed as potential side effects on the drug pamphlet, so nothing too concerning. I am so used to unwanted side effects these days, it is like no biggie. I was talking with a friend and mentioned a couple of these side effects, nonchalantly, and she was like, "what?!"
Oh yeah, almost forgot, the biggest news is that Dr. Davis called Friday. Of course I was outside when he called and I didn't have my phone, so I missed it. But, we exchanged brief emails and he said all of the biopsies taken during this EGD procedure were negative. He reiterated, it is about a 50/50 chance that they find anything, which means I am that exact statistic now. In the first procedure they found cancer cells, and in this one they didn't...so 50/50 it is. This does not change the need for me to have my stomach removed, in fact, in strengthens my desire to do so. Weird, I know, but them not having a reliable way to find out what is going on in there is what freaks me out the most! I know there is cancer in there, because they found it last time. Now they find nothing?! What the heck? Also, talking with other CDH1 peeps, and hearing that the cancer tends to move outward from the stomach lining, not inward, which would make it more visible and easier to find. Diffuse gastric cancer just likes to hide until it decides to show up. And, once that happens, it is too late. I'm not cool with that diffuse gastric cancer, so see ya stomach - you've gotta go now! I am planning to have my procedure in September. There are still some logistics to work out, but that will likely be the start to my new stomachless life.
Lastly, I've got some exciting blogging ideas in the works, so stay tuned. I feel like I keep saying that, but it's true. Here's to hoping next week is more productive and less exhausting!
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