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.
Well here I am at chemotherapy again……Cycle 6 of Gemcitabine. Cycle 10 of total chemotherapy sessions since this thing started up again. My veins are at the point that it takes the nurses 3 or 4 times to poke and hit it. Kind of annoying but I will not get a port again after it almost killed me last time. If I have nine lives I really have blown through over half of them already. heh. My chemo brain symptoms are really coming and going in waves. Some days I cant tell you what I did the hour before. I will say that it is becoming very difficult to physically write letters anymore. Which suck for writing TTMs. It is what it is. To tell you the truth it is actually becoming very difficult to type with all of my fingers as well. Depression is there and sinks in at odd times. Basically, trying to keep busy is the only cure for that. My PTSD is also a pain in the ass. I’m terrified of taking medications again. I have to trick myself to shovel them down my gullet. Truthfully, I am thinking after the next cycle I am taking a break from chemotherapy all together. It was suggested to me by Dr.Kozak before as something to do let my body recoup and heal a bit. Only problem is it gives the tumors and opportunity to grow again as well. I haven’t really made my mind up yet, but I am strongly leaning towards a month off. I am trying to really change my eating habits as well. I’m going to invest in a juicer and limit the amount of meats I eat. That’ll be difficult for be since I am such a sandwich guy. I have done it before, but as we all know habits are hard to break. The things we do to survive these days. You would think that after 5,000 years of human existence and the Egyptians becoming the first society to perform surgeries 2,500 years ago we would have found a cure for such ailments and diseases already. I’m still convince that the all mighty dollar is more powerful than human life to most assholes involved in the medical system. Despite political views of whomever is reading this I can say that the overhaul of the medical system by through the ACA has made things so much better for myself and plenty of others I have met that are sick. Don’t believe the idiots talking shit about it. You want an honest opinion and view about it? Walk into a hospital and go to any ward that has people in long term care and ask them if their quality of life (billing and insurance issues) has gotten better and 99% of the time it will be a “yes”. I could’ve written a book on the nightmare known as the insurance scam. Anyways, I am getting grumpy and in a bad mood so I am going to jet.
Well a month later and I’m still sick. It is what it is but it is extremely annoying. First they said pneumonia which I knew it wasn’t. Then a lung infection, which it wasn’t. Now they say bronchitis. I know that is crap too. So I just keep getting different types of drugs to beat it out of me. Something has to work right? Other than that things have been OK. I have been going to rehabilitation for the extreme pain in my shoulder. Apparently, my muscular shoulders are creating a lot of tension with my tumor and wreaking havoc with the muscles. I feel it. I leave feeling great then it sucks right back into feeling terrible again. The small exercises the doctors have had me doing for years on my left side have paid dividends though. My flexibility and strength has gotten slightly better. Hard work pays off!
As for the chemotherapy though its a mixed bag. My veins are to the point where they are very hard to find and tricky. So I get poked 3 times every time I go in. Sometimes I feel like a damn junkie with all of the needle marks in my forearms. It’s very annoying. The doses are the same except for I had requested my steroid dose to be shrunk again. I did that for a few reasons. The steroids are for inflammation and the help nausea. I don’t get nausea to bad and so that is the only real reason to limit it. The good thing is its less drugs going into my body. The steroids also have lead me to gain weigh so it’ll now help be beat it back again. As for the Gemcitabine, I am tolerating it quite well. Mondays I get my doses and the day becomes slow. Tuesdays I feel sick like I have the flu and become extremely exhausted. Wednesday I feel better but sluggish and tired. Thursday I generally sleep A LOT! Finally, on Friday I am just sluggish. The weekends are good then back at it on Mondays. The symptoms are lightening up quite a bit and that scares me. When I started they were pretty harsh. The Oncologist insist this is normal, but my previous chemotherapy seemed the same way and that didn’t work at all. I guess we will see on March 28th when I have another CT.
I do feel like shit through my shoulder and my chest, but most of that could be from the way I sleep at night. A whole lot of maybes. The pains is kind of hard to explain. It feels like hot pokers and lots of aching all around certain areas. I refuse to take my pain meds because I’m not comfortable with them and my PTSD leads me to freak out a bit. Yes, I am still attending my scheduled meetings with the cancer psychologist to deal with my anxiety, depression and ptsd from my previous cancer experiences. It has helped. My mood swings and previously mentioned symptoms have been curbed a little. How much better can one get when hearing a ticking clock in their head day in and day out?
Well kids Im starting round 6 of Gemcitabine. The cancer has slowed down and stopped growing in many spots. There has been significant change to two tumors in my lungs. The outlook is still very very bad but any little positive is something I’ll take. I did get ahold of my old thoracic surgeon Dr. Maddaus via email and he suggested a surgeon from The University of Pittsburgh James Luketich. Looking up this guys history and studies I can tell why Maddaus said he was the best he knew of to possibly help surgically down the road. Clearly, Im not an easy case and Maddaus would know best.
Other than that I have been sick with some sort of infection and stomach flu. So I had to go to the ER Sunday morning when things were really really bad. I received a script for a high end penicillin and some cough syrup. Oh Joy! I do feel much better though. Obviously, well enough to actually get chemotherapy today. I’m just scared of when the chemotherapy started to not work. What then? Unfortunately, that is what happens with gemcitabine and angiosarcoma. All of these things I think about often. They are quite scary but what can you do besides carry on and consider it as “business as usual”?