First of all, i want to apologize for such a long delay since my last update. I know that, for many of you, this blog is the primary source of news and information about my health status. And I want to keep you informed in a timely manner so that we both feel like we're on this health journey together. So i'm sorry i haven't posted in over two months. 

I don't really have a good excuse/explanation for why i haven't posted in a while but i think it is mostly because i just never felt like it was the "right" time. Usually, i like to write a post when there is a natural break or space - an intermezzo - in my health progress. For example, when i start a new treatment or reach a milestone or make a pivotal change. Some of these things have happened in the last 2-3 months that would warrant a new post - but for several weeks there were a lot of small changes that created an increased lack of clarity about my condition and treatment. During that period, it felt like there were a lot of unanswered questions and it felt difficult to write something that would informative and helpful. And, eventually, even as some of the questions got answered, i just got into the habit of not sharing an update. I still have some questions and uncertainty about my future and treatment but i also feel like i have enough new information worth sharing in a post. 

My main experience since the beginning of the year has been pain. Lots and lots of pain. Last year i had periods of discomfort and pain but they were usually brief and had a specific, identifiable cause. The worst was a 3-4 week period in August during my recovery from radiation when urinating felt like my whole abdomen was on fire. And because radiation causes increased urination frequency, i was having that experience every hour. But i knew that pain was caused by the radiation and would end after a few weeks. 

This year, i've had various types of pain and discomfort that have been hard to identify and are sometimes vaguely categorized as "cancer related". Fundamentally, most of the pain is the result of the cancerous lymph nodes in my pelvis spreading and pushing on other parts of my body. But the pain manifests in different ways. Sometimes its abdominal pain because the tumors are pushing on my intestines or bladder or kidneys. Sometimes its leg pain because the tumors are pinching nerves in my pelvis that extend down my legs. Sometimes its surface (skin) pain because the tumors are causing swelling and stretching out the skin in my legs. 

I've been to the Emergency Room several times this year attempting to identify the cause and remedy for these pains. The first few visits were mostly unsuccessful but the doctors seemed to learn more with each visit. Eventually they discovered a blood clot in my left leg that was causing pain and swelling. (I think that has since been resolved, yay!) And around that time, multiple oncologists consulted and reviewed my recent scans. They determined that the tumors were spreading into my psoas muscle - which extends down the back, through the pelvis, and into the legs. This diagnosis was very helpful for explaining my experience of pain at that time. The pain prevented me from extending my legs which meant that i couldn't walk and i started using a wheelchair to get around.

It was helpful to have an explanation for my experience but it is something that is difficult to treat - and can be very painful. The main remedy is to shrink and eventually eliminate the tumors which we are hoping to accomplish with immunotherapy. But since the tumors had already grown to a large size and were causing a lot of pain, i decided to do a course of radiation that would shrink the tumors and provide some temporary pain relief. Hopefully that would provide a least a couple months of relief, during which i could do some more immunotherapy. 

We did the radiation in February and it went well. I started to feel some pain relief even before the treatments were finished and then i did a month of recovery and most of the pain went away. Unfortunately, as soon as the recovery finished, i started to feel pain in my right leg. (Up until that point, i only had pain in my left leg.) I have since learned that the radiation was only done on my left side and the tumor on my right side continued to grow - and eventually become painful. 

So now i have a lot pain in my right leg. I'm going to do another, similar course of radiation on my right side with the hopes that it will provide the same relief as the first course. If everything goes well, it should give me at least a month or two of pain relief to restart immunotherapy. So that's my current plan. 

Its been eye-opening to me to see how debilitating pain can be. The pain that i've been having doesn't allow me to focus on anything else. I take pain medication and it can provide an hour or so of "relief" here and there but it is never complete relief. It just dulls or masks the pain enough so that my mind can focus on something else. But the pain is always there, just beneath the surface, and it is rare to feel even a moment of real comfort.

I'm hopeful that some more radiation will be as successful as the last round and that pain management will become less and less a priority. I hope you are doing well and experiencing plenty of comfort.