Friday's team meeting was disappointingly short. But, honestly, there really wasn't too much say. We are two weeks in on our seven week journey. Protons have been placed and all we can do is trust that they are doing their job of killing the cancer.
After the treatment session, I first met with Lorena, my Radiation Oncology Nurse. She began by taking my vitals and my weight. It appears that I may have lost two pounds since last week. I always laugh when it comes to losing or gaining small amounts of weight. Think about it, a gallon of water weighs eight pounds. If you drink a quart of water, you just gained two pounds. Obviously, the opposite would occur if you relieve yourself. So, two pounds it not a concern.
The concern about weight loss is the mask. It has to fit tight to keep me in position, or I risk having protons launched into places they don't belong. This seems to be a big problem for my fellow patients that are undergoing chemo at the same time. My heart goes out to them. In comparison, I have it pretty easy.
All vitals are good, so Lorena ushered me to the exam room where I would meet the doctors.
Dr. Akthar was out again, so Dr. Hartsell stood in for him. As of now, the treatments have gone according to plan. I asked him about the nozzle position change in the first treatment position. He explained the incredibly precise detail that the computer has been programmed specifically for me. The amount of thought and planning that went into every aspect of treating my specific tumors. One treatment may place the protons at the bottom of the tumor and the next may place them at the top. Every move is made for a specific outcome.
Next Thursday, I will go through a new CT Simulation to see what changes have occurred. I'm looking forward to a good report of shrinking tumors, even if it means crazy nerve activity.
They warned that it is coming, and if last night is any indicator, nerves are starting to become active. Random sharp pains in my forehead, cheek and jaw kept me awake almost all night. I found that if I lay with the left side of my face buried in the pillow, it helps to suppress the pain.
"Rub it, rub it, rub it!", my mom would always say, when we fell and bumped a knee or our heads. And, it does help make the pain go away. I've passed on this family tradition to my grandchildren, Quinn and Joe. You'll hear a bang from their playroom, a brief wince, and "Rub it, rub it, rub it" from their little voices.
Researchers in the UK have found that it is a natural response to our pain sensing mechanism. When we sense pain, our brains send out a response to check it out. We attempt to visually identify the problem, and depending on the visual results ranging from, no visual signs, to "Holy cow, I have a 3" laceration on my forearm", we take action.
In the case of no visual signs, we naturally rub, or sometimes shake the area. What we are attempting to do is change the state of the nerve that sensed pain. The UK researchers found that rubbing naturally feels good, and by stimulating hundreds of nerves around this nerve, the brain is overwhelmed by good sensation, and shuts off the pain receptor.
This also works with pressure, which I found helped to a certain extent last night.
The trouble with nerves is that they are incredibly complex organs in our bodies. I used the analogy in a past blog of them being like trees. They have trunks, branches, shoots, and leaves. When you think about how they work by design, the leaves - the very end of the nerve that is near the surface - is the area that is designed to sense pain. The trunks, branches, and shoots are there to communicate this pain sensation to the brain. The problem that people have with chronic nerve pain is when something effects a trunk, branch, or shoot nerve.
Ailments such as a slipped disk, or a vein pressing up against a nerve, are issues effecting a branch nerve. Branch nerves are not designed to sense pain, but they do. Surgery is often the only option to correct the problem.
In my case, I have a cancer that has tracked along the trunk, branches, and shoots of my left fifth, sixth, and seventh cranial nerves. The hope is that once the cancer is removed, the nerves will be able to go back to doing what they do - communicate between the brain and the leaves. In the mean time, we don't know the extent of the damage to the nerves. One concern of the doctors is that the cancer is actually protecting the nerves by shielding them from other contact. Once the cancer is removed, I could have exposed nerves all over, that will react to any stimulation. They have seen it in other patients with perineural tumors. That's why they have warned me that it could be coming. And, after last night, I am beginning to think it will be sooner rather than later.
When I think about my situation, right here and right now, I have it pretty easy in comparison to some. If all I have to deal with is pain and sleepless nights, I consider that a win. I am no stranger to pain. It won't be easy, but I will get through it. My 88 year old mom fell and broke her femur eight weeks ago, and is now walking with a cane. If she can do it, I will do it.
The doctors have me in the "cure" category. It's not to say that things could change and go south at any moment, but for right now, they are optimistic that they can kill the cancer and cure me. They are the professionals, and that helps to keep me positive.
The other category is "palliative". This is care that is given to provide relief of symptoms, to improve the quality of life for the patient. In cancer patients, that means that they have exhausted all means to a cure.
How would I react to being moved from cure to palliative? In the same way that I reacted when I found out I had cancer to begin with. I will still wake up every morning with a smile on my face, thank God for a new day, and look forward to what He has in mind for me.
Still being able to eat my breakfast bowl would be a huge plus.
I need to take a moment and thank Craig & Theresa for so generously allowing me to stay in their house for the past two and a half weeks. It has been such a huge blessing.
We make friends throughout our lives who enrich us in so many different ways. I'm not talking about people we know, but people we go through life with. People we have mutually invested time in. People who love us with a true brotherly love. The Greek word is "Philia". That is why Philadelphia is called the "City of Brotherly love."
Asking is the hardest part. I have found through this journey that, when you have true friends, they will be there when you need them. Don't be afraid to ask.
Having that same relationship with family is equally important, and I am so blessed to have such a huge family that will do anything for me. I love you all.
My goal is to be that kind of friend, husband, father, son, brother, uncle, and grandpa. Just ask, I'll be there.
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