First off, sorry it has been awhile since I have posted anything. As you can imagine, the stomach biopsy news has taken a bit to sink in and I just needed some time to get my mind off of things. I know it is cliche to say, but cancer has made me reprioritize things, and it has also made me desperate to seek change. Change of any kind, really. Anything unrelated to the medical side of my life.
So, we decided to start looking for a different home. We have been thinking about this for awhile, and I have especially been focused on it lately. Don't get me wrong, I love our little house. We bought it specifically for it's tiny size, and ease of care while working and living life. And we have truly made it our own, but we bought it at a different time in our lives (even though that was only two years ago). We bought it before cancer, before the knowledge that I will be undergoing at least one more major surgery, before knowing that our lives will be forever changed. It is weird at my age to have to think of things like, will I be able to get up the stairs after surgery, or how will the shower chair fit in the bathtub, or is the bedroom separated from the main living space enough so that I can sleep without waking (because I have gone from someone who could sleep through a thunderstorm, to someone who wakes up when the cat sneezes quietly on the other side of the house). After consultation with our financial people and our realtors, we decided to list the house now in order to have it on the market in case we find a different place and need to move quickly. Well, things moved a lot quicker than expected and within two days of listing, we had nine different parties tour the home and had multiple purchase offers. As of today (four days after listing), we have accepted an offer above and beyond what we ever thought we would get for the place. It is bittersweet, and hopefully it will feel more sweet once we find that perfect place-let the search resume!
Let's see, I finished my 5th round of this chemo regimen. Still planning to complete at least 6 rounds. I am indifferent about how many to complete at this point. My oncologist says the research shows that those who complete at least 6 rounds have better odds of cure, but the study looked at people completing between 6-8 rounds. He said it is up to me if I want to complete more than 6. I am ready to be done, but I also don't want to regret not doing the full 8. So, we will see what I decide, or if insurance decides for me. The weird thing about this chemo, is that I cannot predict the side effects at all. At least with the previous treatments, I knew when I would feel like crap and when I would start to feel better. This one is just wake up and see how the day goes or what new side effects show up. I have been following @thecancerpatient on instagram, it is highly hilarious in my opinion. They are cancer patients themselves and post satirical memes that resonate well with someone going through some of the same things. Well, they posted the other day, "chemo is like a box of chocolates, you never know which side effect you are going to get." That definitely describes my current treatment.
I consulted with a radiation oncologist, who says it is a standard of care for me to receive 6 1/2 weeks of radiation to my left breast area and all of my lymph nodes on that side. This was what I was expecting to hear, but the remaining hope I had that I wouldn't have to do it was dashed when the doctor said it was highly recommended. I believe she said my chances of a local recurrence would go from 25% down to 5% with radiation. Although there are a host of side effects that could occur from radiation immediately, and down the road, it seems worth the reduction of risk at this point. As soon as I complete chemo, I am supposed to schedule an appointment to go in and get fitted for custom arm molds (so I am in the same position each time radiation is administered), and to get tattoos (so they can line me up and the same place is targeted each session).
I had all of my medical records sent to the National Institute of Health, and I plan to get a second opinion regarding my ongoing breast cancer treatment there soon. This came at the recommendation of my CDH1 doctor there. He said it could be part of the study and why not get another set of experts to look at my case just to make sure I am doing everything possible. I look forward to it. Don't know if I have to go back out there, or if I can just consult over the phone. Still waiting to hear.
I updated my official master's project timeline and sent it to my committee in the hopes that it will help motivate me and hold me accountable to finish it within the next couple of months. This is the only piece left for me to complete in order to graduate. I need to get this chapter of my life behind me, and start putting that MPH behind my name already!
I have been watching a lot of Grey's Anatomy lately. I decided to restart the series because I only watched the first few seasons when it first came out. I know, it is weird that I still like medical shows when my life is literally a medical show. Things have definitely changed since the first time I watched it, because I identify so much more with the patients now than the doctors. They even had an episode about a family with the CDH1 gene mutation who came in to have their stomachs removed. Weird. They got it mostly right, but during the surgery scenes they were talking about all the large tumors they found....that is just not realistic! Hereditary diffuse gastric cancer doesn't cause tumors! Come on Shonda Rhimes!!
This was a much longer post than I initially intended. Thanks for reading to the end! I have a lot of blog ideas planned this year, and I will also be guest blogging on a breast cancer support site soon. I will keep you posted so stay tuned!