Simulation session before I started radiation. That’s my Radiation Oncologist in the first picture!
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New comic book I picked up. I strongly recommend it for all who have battled cancer or still are battling.
Had more radiation today, met with the doctor, and had labs drawn. My neutrophils are now 1.07, still low. So still no work and now no exercise. I’ll have my labs redrawn on Thursday. If they were to drop to 0.6-0.7 or lower we would have to delay radiation for 3-4 days but it doesn’t seem likely that that would happen.
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Neutropenic.
I had labs drawn today after radiation and got a call later that my neutrophils were low again. They’re at 1.04, making them the lowest they’ve been since my first round of chemo. I’m not sure if I should work during this. I would think not, but I’ll talk with someone tomorrow. I hope I don’t get any infections!
Anonymous asked: How did you find out you had cancer?
It started with a cough that wouldn’t go away. Then I started getting night sweats, lost my appetite, lost 11 pounds in a couple weeks, and became extremely tired. I went to my doctor’s office about 6 weeks after my first symptoms appeared and she sent me for a chest xray since my cough had been going on for so long. They found a large mass in my chest that could have been a couple things, one of them being Lymphoma. Then I had a CT scan that said the same thing followed by a surgical biopsy of the mass that confirmed my exact diagnosis.
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Aren’t my insides perty? My Radiation Oncologist showed me all the images they created for me for my radiation and it was so cool! One of them was even an “avatar” of my chest, including such good detail they even got my port in there. It was so lifelike I decided it would be best not to post it all over the internet:). The green box in both pictures represent the area being radiated. It’s set up in the second picture to show all the organs that are subsequently getting radiation because of where the tumor was. The blue is my lungs, pink is my heart, purple is my spinal cord, and turquoise is my thyroid. The first picture shows the levels of radiation being given at each point. Very interesting!
I start radiation on Monday. It’s going to be about 30 minutes Mon-Fri for three weeks. The first appointment is longer because they have to do additional xrays and make sure everything is lined up before proceeding. I’m working tonight and then I’m going to see how the first week treats me. If I’m not really feeling any effects then I’ll probably try to work every Saturday night.
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Radiation.
Yesterday I had my appointment with my radiation oncologist. I was interested in hearing what he had to say and that he’d hopefully have some research to tell me what I should do. But somehow I knew it would come down to my decision. I thought if that was the case, I would decide against it.
But my doctor was very knowledgeable and experienced. He first asked me what I already knew about radiation in my case. I told him that my Oncologist had said because my type of cancer is rarer there is unfortunately not a lot of research to support for or against radiation in my case. Some people believe that getting radiation prevents relapse and others feel that the consequences of radiation outweighs the possibility of relapse. I told him that I was most concerned about damage to my lungs, heart, thyroid, and future cancers like breast cancer as a result.
He said that I have a pretty good grasp on the situation. He also added that PET scans are the most accurate detectors of whether or not there are any living cancer cells left, but that they are only 80% accurate. Meaning, especially in a situation like mine where the tumor was very large, there could be small active cells left that were missed on the scan and could end up growing over time. There’s about a 15% chance of this happening. Radiation would most likely take care of that.
He said radiation for this is a lot different than some other cancers in the chest, like breast cancer, and it’s also a lot different than they used to do it. They used to radiate practically from shoulders to belly button and at much higher strengths. For me, they would just target the area right in the middle of my chest and right above the heart (in front of my Aorta) where the largest tumor was. He said they really only have old data about the effects of this down the road. So using that and thinking how it should have less of an effect on me, he said it would likely increase my risk of breast cancer in about 30 years to 1 in 6 people who have had radiation, as well as double my risk for heart disease. He said when they do radiation around the heart, they avoid the muscle itself but don’t worry too much about the vasculature, it sounds like it’s less harsh on that. But I could still end up with problems down the line with hardening of the Aorta, etc. My thyroid shouldn’t be affected because the radiation will be below it. My lungs should also not be affected very much because of the small area that is targeted.
Immediate side effects of radiation are fatigue, Esophagitis (sore throat), and redness to the site being radiated.
I decided to go along with it because I understand what he’s saying about the PET scan missing things. Also, my type of cancer does seem to have a high recurrence rate with people who have done R-CHOP and not gotten radiation, just from people I’m in contact with on my Facebook group. Also, in one of the major studies we have to look at with high success rates of continued remission, 70% of the population was radiated, so it’s hard to tell if the success rate was because of the radiation or just a coincidence, but I don’t really want to take the chance. I think it’ll give me a little peace of mind that I did everything I could to prevent a relapse.
As for down the line, breast cancer obviously wouldn’t be any fun but I feel like I’ve handled cancer once, I could handle it again. Even though we’re talking about me at like 60 years old. I figure treatments will also be a lot easier by then. Thyroid problems are easily treated with medications as well. I guess the big thing that really scares me is heart disease. I’m hoping my otherwise healthy lifestyle would offset that risk.
It’s hard because in either instances you’re dealing with the unknown - who knows if I would have relapsed and needed this, who knows if I’ll get something down the line and this wouldn’t have been worth it. So, I’m just trusting my gut.
So, I guess that’s it. Tomorrow I go in for my assimilation. That’s where they line up the area and I think will give me my tattoos. I’m kind of excited for those! Unfortunately he told me I won’t get a mask… So sorry Leslie - we won’t be able to have ours painted really cool together!
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