Well, I am anxiety ridden to the max. You really will never understand unless you are sitting in my shoes. I can’t sleep and am becoming more and more depressed. It’s hard to deal with despite being fully conscious of my health situation. Its just becoming a burden. Weigh in a huge sense of loneliness and a fear of showing weakness and you have me right now. The loneliness has been bothersome for sometime now. It has yet to be determined whether it is a form of guilt of past actions with a certain few people or if people are scared to deal with everything that I am these days. Probably a fine combination of both. I have never given up in a fight with cancer and I don’t intend to now. I do feel my body breaking down. I feel every single little change in action. That is how in tune with my body I am right now. I knew last week that I had blood issues(Neutropenic). I also feel all of the issues with the nerves in my shoulder and collar bone. So much so that I can pinpoint the spots. At this point I don’t know if I’d rather be unknowing or completely intouch. Either way it is a nuisance upon my mind. I have been back on Effexor and my anxiety is blowing right through it. I’m not on a small dose either. In the end I think I’m basically going crazy. Literally, nuts. My memory has also taken a huge hit. I can’t remember anything without writing it down. Even then my hands are not agreeing with me anymore either. Hell, my hands are really swollen for no reason what so ever. I know my posts recently have been nothing but bitching and I regret that in a way. This is also my way to show the things that one sometimes goes through with the cancer and effects. Better to vent on as well.
Well here I sit again at chemotherapy. To find out I am now neutropenic(810). Oh so exciting. That result is forcing me to get a smaller dosage of gemcitabine. I could also be fighting some sort of bacterial infection. It would explain why I have been feeling a bit under the weather this past week. Although, I wrote that off to the chemotherapy. Only time will tell if I am actually sick with some thing.
Neutropenia is an abnormally low level of neutrophils in the blood. Neutrophils are white blood cells (WBCs) produced in the bone marrow that ingest bacteria. Neutropenia is sometimes called agranulocytosis or granulocytopenia because neutrophils make up about 60% of WBCs and have granules inside their cell walls. Neutropenia is a serious disorder because it makes the body vulnerable to bacterial and fungal infections.
The normal level of neutrophils in human blood varies slightly by age and race. Infants have lower counts than older children and adults, and African Americans have lower counts than Caucasians or Asians. The average adult level is 1500 cells/mm3 of blood. Neutrophil counts (in cells/mm3) are interpreted as follows:
greater than 1000. Normal protection against infection
500-1000. Some increased risk of infection
200-500. Great risk of severe infection
lower than 200. Risk of overwhelming infection; requires hospital treatment with antibiotics
Well here I am again kind of nervous but ready to go on another round of chemotherapy. The redundancy is rather annoying but its what I got to do. I have talked to Kozak again and he is going to help me get into Mayo Rochester to see if there is anything new or cutting edge to attempt down the road. He is also taking my case to the tumor board again. The tumor board is where top oncologists around the country sit in and get my case without my name mentioned and discuss which direction they think I should go and what my current plans are. With that said I am contemplating going back to see Keith Skubitz. He is a specialist in the angiosarcoma/sarcoma field at the University of MN – Fairview. He is a real outside the box thinker according to Dr.Kozak. Thats pretty much what I need at the moment.
Other than that My anxiety and depression has come back to really kick my ass so I went back on Effexor last week. I can feel myself evening out a bit. My speech had taken a really bad hit again as well. Forgetting words. Repeating myself. Forgetting things. An inability to follow directions. Hopefully the Effexor helps out again.
So yesterday the folks and I went into Milwaukee. My entire family is pretty much from Milwaukee so they are usually visit trips. We stopped at my grandparents and great grandparents(whom I never met) graves. The cemetery was quite beautiful actually. It was all decked out in flags for the veterans and the common areas had huge massive flags lining the roads. I haven’t been there since my granfathers funeral which has been almost 5 years to the day. I didn’t know what to expect emotion wise considering I’m knocking on deaths door and we’ve had the funeral talks already. I though I would be a mess but I turned out to handle it quite well. I just know that I miss my grandpa everyday. I’m not religious at all. Quite frankly I believe 95% of it is bullshit. Hell history says so.
Anyways, on the health front I am pretty up and down. I started taking my effexor again because I was starting to forget things and become anxiety ridden to the max. The pain in my chest, shoulder and lower back has been out of control for the last week. I just keep taking my prescriptions in the morning and lidocaine patched in the evening. I am getting a TENS machines for the problem areas though. A TENS machine is a small little pack that you put on your belt and it has electrode patches that you place around the areas of pain. Then you set the electrical “shock” to what is tolerant of your body without hurting you. I did it once and it was magnificent. So we will see how things go.
This coming week I am meeting up with Dr.Kozak. He is the one Angiosarcoma specialist that I really like and trust. We are setting up for another tumor board in 2 weeks. That is where top oncologists get together and discuss odd and rare cancer cases. I’ve had 2 so far, but because of my oddity and the fact I am still breathing I’m and interesting case to these guys. I am also wanting to go to Mayo Clinic in Rochester. They are on the cutting edge of a lot of genetic and clinical trial developments so with the severity and oddity that is my battle I’m hoping we take some home run shots. The reason I’m becoming more pushy about it is my belief that the chemo I am on now has stopped working. It very well could be my PTSD fucking with me but one never knows. Hard to sit here and say settle down. These situations are why one goes crazy and why one can lose all hope. Cancer is a vacuum that sucks everything out of you. You have to get up everyday no matter how hard and keep pushing on. Its the main cog that drives me to really start pushing these doctors to the absolute max and start to make shit happen on my own. Thats the one lesson I’ve taken away from the years of doing this. You have to make things happen for yourself. The doctors are always going to stick you with a generic game plan that covers everyone in that particular circumstance.
Well I had my second dose of Gemcitabine on my 10th cycle. Its never ending. I thought I would feel revitalized a bit after taking that 5 week break but I am mentally worn down already. The chemotherapy process itself, doctors meetings, bill collectors and my own body are just becoming too much to handle. The fact that there is nothing we can do besides trying this and that is completely frustrating. With the new news dealing with a measles vaccine killing cancer I have been busy exhausting my contacts and researching my ass off. It seems to be a never ending cycle of frustration and testing my patience. Atleast this is an understanding that I am all too familiar with at this point. So incase you all aren’t familiar with what was released via start tribune this week here are the links:
Well I had a 5 week break and decided that was good enough for me to get going again. Last week I had a CT scan and the results were as good as they could have been. In my unfortunate case The tumors are not supposed to shrink anymore. All 8 tumors held steady with no changes and I have had a build up of scar tissue over one in my sternum. Undertermined if that is good or bad at the moment. I feel relatively good considering but I also stopped taking every pill and medication they gave me. SO I cleaned myself out. Now that I am starting out again the symptoms are also more prominent but not as bad as before. I feel like hell but if I slow down then the cancer wins.
So What have I been doing? I have been at every Beloit Snappers home game this year. I’ve gone on a small road trip to South Bend to see Braden Shipley pitch (and he was awesome). I also saw and met Clint Frazier in South Bend as well. Super nice guy and takes time with every fan. Pretty awesome and grounded for a kid if you ask me. Past that Nothing much has been happening. Laying low really. I have received more TTMS and IP autos so bare with me in finding all the photos of them.