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  • Writer's pictureKate

Bethesda...Here we come

It is official! I am scheduled at the National Institutes of Health for appointments all day on Monday December 3 and Tuesday December 4 to complete admissions and initial testing as part of the CDH1/gastric cancer study. Dec 3rd, I will have labs drawn, pre-admission screenings, a chest x-ray, and meet with the study's clinical team. Dec 4th, I will have an Esophagogastroduodenoscopy, let's just call it an EGD, where they will map my stomach and take about 100 biopsies. They are looking for anything suspicious. Although biopsies for diffuse gastric cancer caused by the CDH1 gene mutation are very difficult to find by nature, the hope is that with the mapping and multiple biopsies, it will better the chances of finding problem cells if there are any to be found. I don't know what I hope or expect to learn at the appointments, but I am happy to be getting the process started.

Andy and I have decided to take advantage of these appointments, and take a cross country road trip. We will be traveling over 600 miles for Thanksgiving already, and decided what's another 1100 miles to Bethesda, Maryland?! We love to drive and see the country, and it will be new places neither of us have experienced, so why not? We are going to take it easy and take our time getting there, then spend about 5 days in Bethesda, before booking it back home. By then I am sure I will be ready to be back in the house that I have spent nearly every day in for the past 9 months. We are working out the details to have the cats and the house watched while we are away. We will be taking the dogs with to my parents for the holiday and leaving them behind to be spoiled rotten while we drive, and drive some more.

I finished the second round of Xeloda a few days ago. Side effects were more intense this round, but we will see how my labs turn out next week, and what the doctor says about continuing at the same dose and schedule. The thing with this drug is, they start the dose off at the max your body can handle, and then they can taper it down, or switch the schedule to reduce side effects. I haven't had it too bad, but it is definitely starting to feel like chemo, which is no fun.

I have attended two out of four of the breast cancer strength training sessions through the specialty clinic I was referred to by my surgeon. My occupational therapist is great, we end up chatting and forgetting to count reps so probably end up doing more than intended. She is a breast cancer survivor herself, so we have a lot in common and have a good time. The training program is really nice, it has been extensively researched and developed for women who are at risk for lymphedema following breast cancer surgery. My lymphedema risk is relatively low, about 8-16% chance of developing it, because only 2 lymph nodes were removed during my surgery. Lymphedema is basically, a build up of lymph fluid in the arm, sometimes chest, and torso, which can arise after there is a trauma to the lymphatic system (like getting them removed as part of a major surgery). The work out program is very specific to reduce lymphedema risk, it is easy to follow, and has got me moving again. I feel more confident having moves that I know are ok for me to do, and I will continue practicing at home between sessions to build my strength. Last session was the first time we made it through the entire program. I was a little sore the day after, but glad to feel that almost forgotten exercise ache in my body once again.

Got two more packets of paperwork to fill out for SSDI, it is hard to motivate myself to complete it knowing my claim is going to get denied anyway. Stupid disability insurance, making me go through the motions or else they cut off the payments. Oh, and Andy and I got to spend an afternoon at the downtown social security office, which was an experience. It was like something out of a depressing Indy film, only way I can think to describe it.

I have been making steady progress on my master's project, which I feel really good about. I realized today, I have stuck to all the goals I mentioned at the end of my "Breast Cancer Awareness Month" post, so take that cancer!

Until next time. 


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