I’ve received more awesome returns from great players.
Trevor Hoffman, Tyler Heineman, Ty Hensley, Eddie Butler and Howard Johnson
Ty, Tyler and Eddie I must thank you for the personal notes. I’m busting my ass and you guys just keep working hard its appreciated.
I’ve received more awesome returns from great players.
Well I’ll start with my lungs. They have started opening up a little bit. The doctors think it is one of two things now……..Asthma or radiation making its way out. Either way I am now prescribed Albuterol to help open the bronchial passages. I’d say it is slowly working. A week ago I couldn’t even lay down on my back or sides because my lungs were so closed up that the breaths were short and shallow so it hurt.
Moving on into my recent issues I will have to apologize to my friends whom I may have interacted with recently. My PTSD, depression and anxiety were at an all time high and blasted right through my medication doses. I was extremely short and overly emotional with nearly everyone. It was quite embarrassing to me in hindsight. Its hard to focus a lot of the time on something else when my entire life has gone down the drains and the odds of beating this thing are stacked against me. I am feeling quite better now that I went to my cancer shrink and vented my issues. Unfortunately, it isn’t in my nature to crack in front of people but she is really the only person I can. She sees this stuff daily. Not my type of cancer but the mental end of things. I’ve been pretty fucked up for a while and it feels like its getting a bit better. The chemobrain symptoms seem to be subsiding a bit at the moment. I’ve been able to start writing again. That’s a relief in itself, but I can’t go too long because my hand starts to shake and swell up. I keep trying though.
Anyways, I’ll write more later I’m really tired and my shoulder hurts.
Lots to talk about here.
-Pittsburgh called me back and wants to look at my case more indepth.
-Pitt needs all of my scans and samples. UW and Mercy never sent them. Not shocked. I now have to bust some heads the next few days. Although UPMC offered to pay to have it sent to them via UPS.
-I’m on my week off and I’m going back to Eau Claire to see some friends and lovely ladies.
-My PTSD, anxiety, and depression have been pretty out of control. I’m trying corral it, but its hard right now with everything going on and my choice to take a break.
-The chemobrain effects have really messed with my hands as of late. Holding a pen or a pot handle has been extremely difficult. Typing takes quite a bit, but my pointer fingers are doing the job.
-I have been doing so much research as of late and not coming up with anything really new.
You know my rehab days are fantastic. After years of having all of this pain in my shoulder and shoulder blade I am finally in a rehabilitation program. It is nothing special or intense. I show up for a 30 minute session every Wednesday and Friday. I get 8 minutes of ultra sound around the muscles in my left shoulder, neck, and shoulder blade. Then the woman (pam) structurally works on different muscles trying to loosen them up. If people have been following my blog/bitching one of the tumors is in the lymph node underneath my left collar bone and it creates lots of havoc on the surrounding muscles. The pain starts where the tumor is and slowly moves down to my rotator cuff and up my neck towards my ear. I also have had a spot right smack dab in the middle of my left shoulder blade that was nicked during a surgery that feels like I’m being stabbed. I’ve had it since 2002. I have lots of pain where my surgical scars are and Pam worked on them briefly this past Wednesday. I am feeling it today. The idea is to loosen up the muscles and release the tension and lactic acids that are built up. The problem with that though is my body has had so much trauma that its very difficult to rework and correct the problems. Granted my shoulder does feel much looser and a when the pain flares up it still kills but hasn’t expanded as far across the shoulder as it previously did. So good things are happening there. I’m really looking forward to more work on the spleenectomy cut area and the bottom of the chest resection area. I so want the numbness and pain to disappear. Any relief is welcomed. So far, so good.
Well I’ve had a few stressful days and I’m okay with that. I think it has been pretty good to finally make a decision about my next few steps. I don’t like to do things without a plan but in reality I become more nervous if everything is easy repetition. The outpouring of love and support from my friends and family has been welcomed. How could it ever not be? Granted its really hard to explain what is going on with my health situation without actually being in my shoes. I get that. I try to be as open and explaining as I can. Lots of websites dedicated to angiosarcoma. The unfortunate part of that is that others have come and gone and failed to lived to tell their continued life story. I’m one of the few. I’m proud of that no doubt, but it doesn’t come without an understanding that I very well might be up shit creek without a paddle right now. I’m grateful for the life I live. I have always been if fair control of things and realistically I am just at my breaking point. To finally be at my breaking point after 12 years, multiple surgeries, 3 near life taking situations, chemobrain and multiple treatments. I’d say I’ll finally accept my moniker of being “tough as nails”. Its still doesn’t help anything now, but its a little kick in the ass. Right now though I am worn out from everything. I need a vacation.
Since I had chemotherapy yesterday and next week is my week off of chemo this is where things get interesting. The day after every chemotherapy sucks. The steroids have me so wired that I don’t sleep until about 8am the morning after getting the dose. Well we scaled back my steroids by 2/3rd. So far so good. No additional symptoms have popped up today. I have the typical feeling of having the flu and being extremely dehydrated. On the other hand my stomach doesn’t annoy me, my complexion isn’t ghost white, and the extreme bloating isn’t there. The steroids were the issue just like I thought they were. We will really know next week when I am in my week off of chemotherapy doses and my body starts to recover and generate healthy cells again. For those that don’t know I am actually sicker that week then when I am on the drugs. I get extreme lower body aches that are pretty debilitating, extreme stomach pains, shit my guts out and develop acid reflux. The drugs they give me to help curb those things don’t work for shit. So I’ve stopped taking them. These things are normal though when ones body starts to regenerate cells in their stomach. Its the first place that they grow again in your body after chemotherapy doses. I also don’t know if people understand how chemotherapy essentially works either so I should probably explain that at some point here. In generic lehmans terms.
Well kiddos I have made a pretty big decision in my cancer treatment today. If you know me you know I take everything to the absolute max when it comes to my treatments and strategies. I start up another cycle of Gemcitabine The first week of March then go for three weeks and on the fourth I have a scan to determine regression or progression. Then I am going to take what is called a “chemo holiday”. No chemotherapy for a certain amount of time to help my body recover. I am planning on two weeks off then a CT scan to determine if the cancer starts to grow again. If that CT scan determines nothing has changed then I will take another 2 weeks and start up again. If the scan at the end of March determines the cancer has grown again then I will stop the Gemcitabine and take a 3 week break. Then start up on Regorafenib as a last ditch resort to extend my life. As we all know I am a fairly tough as nails individual when it comes down to this cancer shit, but I am physically beat down, mentally drained and an emotional wreck. I just can’t keep up with it right now. At the end of my next cycle I will have been doing fairly aggressive treatments for nearly a year. 10 months with no break what so ever. If everything goes as good as I expect it to then we will continue after a month break and possibly adding on radiation to attack the stuff in my lungs on top of chemotherapy. The radiation will only happen if we develop a plan that is aggressive yet wont be too toxic for my body and the bleeding issues are solved. So lots going on, but for my well being and ability to be happy/healthy I need to do this. During the break I might also be heading to Pittsburgh to see Dr. Luketich about future surgeries and opinions. Road trip anyone?
While everything remains very bleak I’m holding out for some home run shots. It’s all I really have left. Thanks for the continued support. Please understand that things are very tough for me right now and I haven’t made it 12 years fighting this shit on bad choices.