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.
My Brothers in Black Veil Brides
Girl on Fire
For All Those Sleeping (final tour)
12Rods (reunion show)
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.
When I was 18 I went on the German exchange program for a few weeks. At that time my host mother took me to some famous churches and buildings. I never appreciated it as much as I do now. I do remember her taking me to St.Stephens church. The reason this church is notable in my memory is because of the Marc Chagall stained glass windows. Marc Chagall was a painter. A famous one at that. Rather beautiful modern paintings. Now he did do stain glass work for a few churches as well. What is so spectacular about this particular church is that every window is a blue stained glass window. It is amazing to be inside of the building and seeing the blue encompassing the whole room. The windows are beautiful. I as one of non religious deity still appreciate the artistry of these buildings. It is truly one of the few things I can remember with consistency through the chemobrain. I can never thank her enough for that experience, but years sometimes separate everyone.