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?
I am in my hotel room dealing with my anxiety for tomorrow. It sucks so hard. I need great news and options. Preferably, nothing is growing and we think this might be able to be dealt with better by surgery. Long shot but there is always hope. OK gotta try to sleep.
Yep a few setback I have noticed and also have been told about. My chemobrain is still whooping my ass. Despite being off of chemotherapy now for a few weeks I am still dealing with this issue. I have been catching myself thinking I am talking to completely different people on the phone. I’ve also written the wrong doctors names to the wrong building but the right times and locations. As if that wasn’t enough, I am fairly sure I have written to ball players and mailed to the wrong guy. Heck, I’m fairly sure I’ve written to players and forgot they were traded or signed to another. Ha ha ha. If you can’t laugh at yourself then what else can you do, right? I’ve also noticed I am talking face to face with people then completely forget who and what I am talking about. It’s kind of crazy. Despite my embarrassment people seem to be rather supportive in helping me snap out of it, so to try and even me out I am taking my effexor back at the full dosage. Hopefully, it helps. I am also having issues with basic instructions again. It sucks. Cooking is a nightmare. It’s something that will never go away unfortunately. I’ll never be satisfied though no matter how hard I try to beat it. One good thing is my hands are moving quite freely and am able to write a whole lot better. I still have issues with remembering words and keeping the pen on the paper while writing. Rewriting things that are already written seem to be an issue too. Nonetheless, I’m still trying to send ttms for fun and to fill my time. I leave for Mayo clinic on Sunday. Plenty of free time until then.
I have had a blog all typed up and saved but I decided to scrap it and start anew. Most of my chemo withdrawal symptoms have subsided. I am still dealing with chemobrain(not as heightened) and extreme fatigue on a normal basis. I had dealt with a viral infection for roughly five days, but I am in the clear now. So today I actually started to get the part of the after effects that I hate the most…….nausea. It isn’t like normal nausea though. For example I could be standing somewhere and get this dizzy feeling out of nowhere and awkward tingling in the shoulders then it subsides. Outside of that I’m feeling rather fantastic now. I’m only taking a few pills now as well. Plus adding in my two types of inhalers I am kicking some pretty good ass now. I feel great though and it is a much needed break from getting the crap kicked out of me.
During this break there are a few things I’m trying to accomplish. 1. Kicking soda. It has happened before for quite a while too, but its tough. 2. Trying to do nothing, but water and one of my 4 types of teas (buy groundgreentea.com teas. They are the best for your body. Absolutely pure). 3. Getting out and walking more. 4. Seeing more doctors for opinions. I have two set up in Minnesota. One at Mayo in Rochester and another at U of M. 5. Try to see as many friends as possible between Minnesota and Western Wisconsin. 6. Get to some hockey games AHL and NHL. 7. See my friends in some rock bands Black Veil Brides and For All Those Sleeping. Who doesn’t need a good rock show, right? I got tickets for Girl on Fire, Snot, 12Rods and Steel Panther. It’ll be fun. 8. Work on my ttm letters to ball players. My hands are holding up well and I’m forgetting some words. Otherwise its a chore still, but improving slightly. I can’t really argue because of the alternative.
With all of this time off I’m hoping to be completely renewed and strong enough to get back and kick some ass in treatment. By really hammering down the right vitamins, limiting the drug intake, and pounding water my veins should in theory open up a bit more. I’m hoping so otherwise I have to make a pretty big choice in whether to keep getting stabbed, put in a PICC line or go back to a port (which almost killed me before). Not a fan of any of those choices.
Well my last dosage of Gemcitabine was on the 15th. Usually a week and a half after your last dosage the withdrawal symptoms start kicking in. I have been going through a wave of things. This withdrawal heightens my anxiety and depression symptoms so sometimes I have to take the additional pills they prescribed for me if this ever happened. So besides that being the suck I have had terrible muscle pains in my left shoulder, left shoulder blade, complete neck and both of my collar bones. Because of it I’ve been living on my TENS machine and used damn near all of my Lidocaine patched up. I’ve also experienced shooting pain in my right collar bone (not a good sign) and the feeling of hot pokers in three different spots in my sternum. My migraines have also returned and its been excruciating. Exhaustion has also been extremely common and a pain in my ass. I’m falling asleep in random places in the house. Now with all of this said I still have a few more things going on. I run fevers at night and feel like I have the flu. There has been a little bit of throwing up and acid kicking up out of my stomach despite having a larger dosage of omeprazole to control it. My lungs have also been either really good or a heavy mess. It has caused my sleeping to suck and be pretty sporadic. Thats about it. Amazing, I know!
Soon enough I should be through this stuff though. Last time wasn’t this bad, but I also was on Essiac tea. I’m actually starting it(Essiac Tea) up again this week. I am a full believer in it. I’m also ordering up grounded tea leaves from Sei Mee Tea Company again as well. Their tea is know to be one of the purest forms of green tea and its super easy to use and travel with. I suggest everyone try it.
In other news I had a CT scan to see if there have been any changes in the tumors. I receive the result tomorrow at 10am. SO my anxiety has been pretty freaking crappy this weekend. To keep my mind off of things I watch the Packers, worked on my massive puzzle and was lucky enough to hand my hands work long enough to write a few TTMs to some stud minor leaguers I like to follow.