Well Yesterday was my birthday and it also means I’ve spent the last month and a half trying to right old wrongs and get a sense of clarity. It has been going quite well. I will say that I do not feel any better about things. It is weird. I figured I would have a little bit of relief. Consciously, I have been trying to just say, “Fuck it” but I haven’t been able to let it go. I’m glad I see my shrink this week. The amount of of doctors appointments I have this week are pretty much back on par with when I was on chemotherapy. Rehabs for my muscle strength and acid build ups, shrink and oncologist. My oncologist should be a good one. I’ve been going crazy thinking about it. I had a CT scan done last week and I’m just waiting for the results.
Anyways. Its always a weird feeling knowing that you are getting older. 10 years ago I lived in Nashville, TN. It was a get back on my feet move. After a fight with cancer a few years earlier and going totally broke. 5 Years ago I was trying to bounce back right after chemotherapy and surgery. I had a major case of chemobrain so I do not remember much of anything at all from that time period. Now I basically have a handful of friends that I consider close, an ex who will never shoot me straight about anything, a brother who is extremely selfish and people I consider more passersby. Maybe I’m more irritated and irrational. Yes, we all grow up and move on in life. Kids, husbands, wives and jobs. I get it. Yes, I’m single. Its not fair for me to bring another person into my life and then possibly just die on them. Thats not right. I’m single for a reason. It is very depressing and lonely. This is the what happens when your life can only sit still in time while everyone you know moves along. I’m so sick of people I know acting like I have all of this free time or non pertinent shit to do all day because I am single or didn’t fuck up and have kids. My job is staying alive and trying to fix what my body cannot seem to do on its own. I cannot drop things on a dime. I have to plan months in advance. While I’m at it my friends really are self centered assholes the more I think of it. I have friends that haven’t even crossed the border to see me at my houses/apartments despite not having lived in Minnesota or Eau Claire for 7 years or more. Why am I the one that always has to travel or make the plans? That is total bullshit. A couple of months ago I stopped texting or calling everyone unless they get a hold of me first or are extremely close to me. It’s amazing how much I have to do to keep friendships afloat. Maybe a dozen people have even texted me without me instigating it. So yeah I’m having a lot of self realization and finding out who gives more of a shit than others. You would think that with my health concerns people would be a little more open and thought conscious.
Not a whole lot is happening at this moment I am still on a chemo holiday. Tomorrow I go to my rehab appointment to work on the muscles in my back and shoulders. Since I have no chest wall the extra acids build up in other places. Its been pretty painful. Overall though I’m feeling pretty damn good. I get the aches and pain but I still get the massive sternum pains. Next month I will have another CT scan. If nothing has changed then another 3 months of no chemotherapy. If only one or two of the trouble tumors has grown then we will either do nothing for another 3 months or possibly radiation or back on chemotherapy. We shall see.
Yes, I’m still alive and kicking it. A lot has been happening as of late. I just moved into my folks new house outside of Madison. It has been great. I basically have the basement to set up as a man cave. I’ve been really tired and beat up from over doing it, but shits gotta get done. More rehab appointments have been made and they have been fantastic. I’m starting up with the UW cancer psychologist again soon. Just trying to get back into the normal swing of life again. It’s been easier to move along acting like nothing is happening as of late. While there is still quite a bit of pain and severe aches the management of it has been fairly par for the course. I feel good though. Compared to the first month off and time on chemotherapy I feel like a Billion dollars. I haven’t been on Chemotherapy since I stopped in August. Another CT scan was taken at the end of December. Results were positive for knowing this is a terminal condition. The next step is another CT scan at the end of February or beginning of March. If only the one tumor that on the previous 3 scans has grown then we will do nothing and scan again in 3 months. If that scan has the same result then we will attempt Radiostatic surgery/chemotherapy. I will lose more lung function but it will allow me more time to actually live life. Now if the next scan has changed to more than just the one tumor we will proceed right away with doses of Gemcitibine until it stops working all together. I did see one of my oncologists, Dr.Kozak. He completely agreed with my assessment of the next steps and also the suggestions of UofM and Mayo clinic which were identical to mine. When the Gemcitabine stops working its on to Prozapanib and really being sick. Basically I’ve got to enjoy what I’ve got left in the tank. Do yourself a favor and look at your life as say, “I’m so happy to be healthy”. Also I know that I complain a lot about a lack of sleep, insomnia and anxiety. The good part is a lot of that has subsided for the time being. Things are good despite some obvious hiccups. My memory is still absolute trash.
So here I sit wide awake. I’ve been reeling from my consecutive nights with massive insomnia. I just cant fall asleep anymore. My anxiety has started to creep up a bit lately just knowing that I had scheduled a check up CT at Mercy hospital. It isn’t until the first week of December but I haven’t exactly been the pinnacle of healthy eating or drinking as of late. So I’m just nervous about everything. Blocking out a lot of the terrible things that run through my mind was quite easy for a while there, but now not so much knowing it has been a while since I’ve had chemotherapy. The standard thoughts of “Is it growing?” ” Fuck I hurt” ” I want this pain to go away” “Why do I have to deal with this shit?” have now evolved because of life conversations with people I know have turned into more adult thoughts and issues such as…. “I don’t date because that isn’t fair to the other person involved” “Sometime I wish I had someone willing to listen and be here with me through my turmoil” “What is my future deterioration going to be like and what do I need to do to prepare?” “I really don’t want my niece and nephew to see me falling apart”. The list goes on. The other that really bugs me is when people tell me I don’t look sick. Yeah I know. Am I lying about that? That doesn’t make me feel any better. Not all cancer patients lose their hair, become super skinny or extremely pale. Sorry to disappoint. Despite the minor good news I am preparing for the proverbial shoe to drop. They seem to go hand in hand. Just another reason I am dreading the upcoming CT scan. Additionally, my cognitive issues are still effecting me. I fully understand they will never go away but it is just so frustrating. Constantly, I am forgetting dates and times for appointments. Hell, I’m forgetting some conversations and tasks. Its been ugly as of late and I’m trying to hide it from people but its way too hard to do. Also, it is quite embarrassing. Its all about keeping some sort of humility with this utterly sad existence I have at the moment. Its really all one can do to try and stay sane. Finally, I’ve had one new health issue crop up and that is white spots in my vision. It is so annoying.
Stereotactic radiosurgery uses numerous precisely focused radiation beams to treat tumors and other problems in the brain and other parts of the body.
Stereotactic radiosurgery focuses many beams of radiation at the tumor, delivering high doses of radiation to the target area with minimal exposure to the healthy tissue that surrounds it. Treatment to the brain and spine is typically completed in a single session. Treatments to other parts of the body may involve multiple sessions.
When doctors use stereotactic radiosurgery to treat tumors in areas of the body other than the brain, it’s sometimes called stereotactic body radiotherapy or stereotactic ablative radiotherapy.
Stereotactic radiosurgery is used to treat:
Brain cancer, including primary brain cancer and brain metastases
Brain tumors, including pituitary tumors, meningioma, acoustic neuroma
Blood vessel abnormalities in the brain, such as arteriovenous malformation and dural arteriovenous fistula
Chronic pain caused by trigeminal neuralgia
Metastatic cancer, including cancers that spread to the brain, thyroid, lung, liver, spine and adrenal glands
Skull base cancers and tumors
Tumors that recur after radiation therapy
Doctors use two types of technology to deliver stereotactic radiosurgery. A Gamma Knife machine uses gamma rays to treat cancerous and noncancerous brain abnormalities. A linear accelerator (LINAC) machine uses X-rays to treat cancerous and noncancerous abnormalities in the brain and other parts of the body.
Well Mayo hospital in Rochester, MN was an interesting stop. It didn’t start out too hot at all. Last Monday I went into the hospital and received my itinerary. They neglected to tell me that the specific Oncologist I requested took the week off. What pisses me off the most is that I called multiple times making sure everything was set up for Dr.Okuno to see my notes and scans then meet me. He went over all of my old notes and scans (what was actually sent to them which is another issue entirely), but was gone and wasn’t around to see my current scans obviously. So his fill in explained to me his notes and detailed look at the scans. The last scans they actually got were from April. It turns out that the scans at Mayo are far more indepth than at UW and Mercy. The scan slides at Mayo compared to the others are 3:1 SO they are much more detailed. With that said, it was apparent that only one tumor truly grew from that time until present. The tumor growing is fairly isolated on its own in my lower left lung. The good news about its isolation is at Mayo they have a type of radiation that pinpoints the tumor and blasts it at multiple angle without destroying a bunch of random tissue around the area. Although with that treatment it will severely restrict my breathing even more. Especially since I already have heavy scarring and a radiation cloud in my upper lung that is actually shrinking because thats what it does over time. Regardless, I am still in a bad spot but there is no doubt I am doing a really good job staying alive. SO since nothing much has changed over my time off it was actually suggested by both U of M and Mayo clinic that I take off another 2 months and go in in December for a scan. There wasn’t much different suggested from my final stop at U of M. Not that I really expected there to be one. Surgery will never be an option. This type of Radiation is expensive but will extend my life and wasn’t refuted at either location. The radiation is called Stereotactic Radiosurgery. Anyways at this point it is wait and see with not doing chemotherapy until my body shows signs of growth. If 6-8 months down the road I show continued growth in the one tumor then we talk about the SR radiation. Also suggested for possibly a year out with minimal growth is doing a full genetic panel and trying to come up with chemos and drugs that could be used to help fight against my bodies natural genetic mutations. All in all I found it to be a worthwhile trip. Despite not learning much new I did find options to life extension. How could one argue with that?