It’s been a while…
It’s been six weeks since I had surgery to remove the recurrence in my neck. The recovery from this surgery has been a lot slower than the last one. A lot slower than I had expected, at least. Because the surgery was in the same location I had radiation and surgery last time, there was a lot of scar tissue already present in the area. Despite having muscle removed, my neck doesn’t appear all that different. Once the scar has completely flattened out, I doubt anyone will even notice.
Moving forward, my team of oncologists has recommended no further treatment. Based on the pathology, they believe the surgery removed it all and it showed no signs of moving from the one isolated area. As a precaution they removed the tumor, two muscles, a huge nerve, and my jugular vein. But, they really believe there is a good chance the surgery got it all and that more treatment would just cause me significant harm while providing very little good. Obviously, no treatment is good news. No way in hell I want to do radiation again. I did get a second and third opinion, however.
The second opinion was at a major university hospital two hours away from me. They are known to be one of the best hospitals in the country, known for their extensive research. Their opinion was to move forward with higher dose re-irradiation and high dose chemotherapy. Afterwards, if I qualify for the trial, immunotherapy. At first, I thought I would do it. Yes, it would be beyond painful. For anyone who has never experienced or witnessed radiation to the mouth or neck-imagine having all the skin inside your mouth and neck burned away. And then stay like that as it gets worse for a month. No medicine exists to make it feel better. The pain is just always there. But, if they said that would make my cancer go away, really go away, I was ready to do it.
But-They were proposing this idea based on maybe my cancer still being present. They admitted that the cancer may be gone. But, they still wanted to blast my neck anyways because that’s their protocol. To make matters worse- the medical oncologist (who is in charge of chemo and immunotherapy) was trying to convince me that of all chemo drugs he wanted to give me, not one has a high chance of causing fertility issues. He didn’t recommend I waste the time and see a fertility specialist before starting treatment. (I’m 29 with no kids. This is bullshit. Chemo drugs are literally designed to destroy rapidly dividing cells, so, uh, what do we think my ovaries make?)
What scared me even more is that the radiation oncologist kept telling me that re-irradiation would cause me little side effects. Bullshit. I asked my radiation oncologist, she said it would essentially kill my thyroid and any remaining lymph nodes in my neck. One tonsil was already killed from radiation last time, I could say goodbye the second. There’s the possibility of significant and permanent vocal chord damage and damage to my spinal cord including paralysis. The scariest part, which, yes is a risk for any radiation to the neck. But, because this would be a second round of radiation the chances are much, much higher-a carotid blowout. Meaning, my carotid artery could literally explode open in my neck, killing me instantly.
The worst part-they said it would absolutely not change my future chance of recurrence. So, what’s the point???
I’m done with that place. Never, ever will I step foot in that place again. I felt like a lab rat. Like they were willing to risk anything, including my life, just to have another patient to research.
I got a third opinion from another major hospital near me. They agreed with my current team of oncologists. More radiation and chemotherapy does not change my future chance of recurrence-so why cause all the damage and risk death?
From here, I’m going to focus on staying healthy. I’m in physical therapy to strengthen my shoulder and hopefully break up some scar tissue in my neck. I start speech and swallow therapy in two weeks to regain control of my throat. (It’s not too bad, but swallowing liquids can be tricky and I constantly cough like an 80 year old man who has been smoking since 10) My PT says I can start doing yoga again in a few weeks-as soon as he thinks my shoulder can handle weight.
I have a garden planted for the summer with lots of tomatoes, cucumbers, kale, spinach, and lots of herbs and flowers. I started doing some work from home. And more exciting, I’m looking into starting school again in the spring. I’m looking into programs to become a registered dietitian. Unfortunately because I have a Bachelor’s of arts, I will have about 2 years of science pre-requisites to take. But, I’m looking forward to one day helping cancer patients get through treatment a little easier, with the help of good food.