Again, it's been a while since I have written. Not for a lack of things to write about, that's for sure, but maybe more of a lack of enthusiasm.
Recovery is the toughest part of this journey so far, and to be perfectly honest, it is difficult to keep any sort of positive attitude through it.
Everyone is different in the way they handle the news, when they first find out they have cancer. Is it terminal? Is it treatable? How much time do I have? What are my next steps? You meet with your Oncologist and create a plan. No matter what the treatment plan is, you find hope and comfort in doing something that will change the situation for the better.
During treatment, we endure the side effects that come along with radiation, chemo, and surgery. For me, the radiation burns were bad. On my face, and in my throat - both made it impossible to live normally. But, there was hope and comfort in knowing that it was all temporary. It was the means to a better end.
I could wake up in the morning with a smile on my face, and a positive outlook for the day. I would head over to the Proton Center, excited about another treatment. Everything was going according to plan. The cancer was being destroyed in real time. It was a time to be optimistic.
There was good news in my first post-treatment scans. The plan had worked. The cancer was being destroyed. That's when I stepped from the treatment phase to the recovery phase.
Recovery is the time that it takes to recover from the treatment.
In recovery, there is no plan. There is no way of knowing how long it will take to heal what was damaged, either by the cancer itself, or during treatment. Every patient's treatment is different, and every patient's recovery will be different.
The most frustrating part for me is that there is no one-doctor that knows everything about my situation. I have a team of doctors that keep up on my case by reading the notes left by previous doctors. They are all specialists in the fields that they practice. Is it foolish for me to think that any one of the doctors on my team has read my entire file? I would like to think that they have, but realistically, I am one of dozens of patients for each of them. Honestly, who would have time to?
I have one oncologist telling me that they feel all of my nerve damage will heal in time, while another oncologist says that the nerves will never heal. Although these doctors have been great through this process, they are cancer specialists. Shouldn't a neurologist be the one to answer that question? Oh, sorry, you can't see a neurologist without a referral. Who is going to write the referral? Your primary care professional. You mean the guy that I have yet to meet, that knows the least about my case. Yes, that's the one.
I will meet with my new PCP at the end of this week. Hopefully, he has read my file and is up to speed on my case.
I'm still on schedule to return to the Chicago Northwestern Proton Center on September 17, 2021 for another round of MRI and doctor review.
At this moment, I am in Palm Springs, CA, visiting with my parents. We had a Cunningham Family Reunion this past Saturday. It is crazy to think that of my parents five children, they have twenty-seven grandchildren, and (I believe the count is) nineteen great-grandchildren. Most were present on Saturday. It was a great time to connect with our parents, catch up with our brothers, sisters and cousins, talk with our nieces and nephews, and try to remember the names of all of the great-nieces and nephews (and who they belong to.)
I am blessed to have such a huge, loving, supporting family that truly cares for one another. It makes me sad to hear of siblings that haven't spoken in decades. Sure, we've had our times of disagreements, but in the end, we have always come back together as a family. That's what is important. I couldn't imagine taking this journey with them.
