Anxiety ridden

Ive been beating myself up over the last few months. I’m such a mental mess. Its hard being conscious of such a thing, yet so helpless. Everyday is a haze. Somedays are better than others. I forget words when speaking. I forget what I’m doing or have to do. I don’t remember bits and pieces of days, weeks, or months. Not to mention that physically I cannot do things. I can’t breathe all that well and my left side doesn’t allow me to lift much. Its just gross. Understandably, this would make anyone furious about life. I’ve made it 8 years like this, but 15 cancer ridden. Its been worse mentally, but its at the point of taking a toll on me. Cancer and chemobrain has literally destroyed my life and continues to do so. I had a great job, life situation and means. Ive built myself up so many times now that I just plateau low so it doesn’t hurt much. No doubt I’ll carry on being the same person though, BUT just understand that right now I am burnt out. Burnt out, broken and bottomed out. Every 3 weeks when I see my cancer psychologist these are the things we talk about. Consciously knowing that the cancer will grow again soon is a huge strain. As bad as it sounds, I had a purpose and nothing to wait on or worry. Survival was my only goal. An everyday fear I have swirling around in my head until that drops on me. All I know is survival at any cost. The stress and pain right now just has me tired and extremely unhappy. My refusal of medications probably doesnt help. I’d rather feel alive than be a zombie to the World. Don’t take my high and low mood swings personal. I can’t control them. Don’t be disappointed if I don’t hang out or talk much. Its how I cope and avoid issues. Its hard to understand and present to others. There is no one I know that has the same experience Ive had. Most chemobrain isnt reported, nor is it as severe as mine has been. Honestly, I just want to be happy again. I couldn’t even tell you when that was. Hard to know considering how long I’ve been fried. Just know I’m going to continue to be as much of myself as I can. I’ll bounce back. I always do. Chemobrain or not. Im gonna put work in. Just stick with me.

Thanks,

Justin

Same old stuff

So here I am years removed from my last chemotherapy dosage. I am still dealing with all of the mental issues I care but on what seems like a bigger scale. Effexor seemed to have worked for a while but I stopped using it and recently I have a total mental breakdown and went back 666on it for the first time in nearly a year. I was such a zombie on it that there was no choice but to stop taking it. Not the life anyone wants to live. Im better now though. Just had to work at being better consciously.

Heading back to Mayo

I’ve received a few messages asking whats up. I honestly have been avoiding my response about it. I just wanted to set more things in stone before I get the avalanche of follow up questions going. No I’m not complaining about questions. People have to understand I get a lot of them and still have zero problems responding to them.

July 23rd I have an appointment back at the Mayo clinic in Rochester. Admittedly, I wanted to wait for one more scan in August but I’m extremely uncomfortable physically and wanted to get in. The oncology department at Mayo were also the ones that wanted me to come back after 6 months and it is 10 months now. They wanted me to come back because they thought that there could be possibilities for surgery/radiation to removed one or both of the very large tumors. The amount of things coming out from Mayo right now concerning late staged tumors felt like a good time to book it and roll the dice. They are on the front edge of most cancer treatments so what the hell am I going to lose besides gas money? I’m not expecting much of anything truthfully because this current time through it is a huge pain in the ass compared to the previous two fights. Although, if anyone is a perfect candidate for these extremely new and experimental treatments it’d probably be me. It is still a move to prolong things just like it always has been, so like I said I’m not really getting my hopes up. Currently, I’m doing good. I still have chemobrain and anxiety issues but some days are really bad and others not so much.

Another Update 04/03/2015

So it has been relatively quiet on my health front. My previous scan that I thought I wrote about and didn’t turned out absolutely fantastic. The largest tumor has remained the same size and the second actually shrunk. Its not supposed to shrink at all. I’m not on chemo or anything. I’m just drinking a ton of green tea. Its odd. I’m depressed, confused and mentally lost a lot of the days. Attitude I believe effects the body more than what you ingest. If you keep your whits about you and informed you have a better chance at extending time.

With all of the new documentaries coming out on killing cancers my attitude fluctuates. Its weird. I’m super stoked that these scientists and doctors are able to develop and test these “cures” in a lab. To see people taking the chances despite in very very small quantities is fantastic. The FDA pisses me off though by holding back a lot of these treatments for more study. I would take a blind shot if I could which leads me to frustration and confusion. Why are they not extending these trials to other kinds of cancers if in labs they are killing them? I also become more pissy because I know that Angiosarcoma will never be cured and it probably isnt even being looked at in these immunovirus vaccines. Here I am test me! I’ve been dealing with this shit longer than anyone ever before. Argh it just makes me livid. Why!?! Why don’t I get to have something to take a stab with? I mean I’m glad they are working with Glioblastoma a sarcoma a believe. I mean atleast its in the family despite being completely different. grrrrrrrrrrrrrrrr.
http://www.killingcancer.vice.com
http://www.cbs.com/shows/60_minutes/video/?ftag=ACQ518ad43&vndid=60%20Minutes&ef_id=VR42SQAABS@xuLSi:20150403064217:s

Right now we are in the what if stages of planning for possibilities. Its kind of dumb but the oncologists don’t want to talk about radiation options until we go through one more scan at the end of May. Realistically, they don’t want to get my hopes up because everything is so bleak. Although they do know I have an extensive history with cancer. June is going to be a huge month for me pretty make or break. Once again. Its a never ending cycle. If anything it’ll be more waiting around so I’ll get to watch a ton of baseball.

Next week Thursday I have an appointment with my cancer shrink so maybe I can decompress more.

Life 02/22/2015

Well Yesterday was my birthday and it also means I’ve spent the last month and a half trying to right old wrongs and get a sense of clarity. It has been going quite well. I will say that I do not feel any better about things. It is weird. I figured I would have a little bit of relief. Consciously, I have been trying to just say, “Fuck it” but I haven’t been able to let it go. I’m glad I see my shrink this week. The amount of of doctors appointments I have this week are pretty much back on par with when I was on chemotherapy. Rehabs for my muscle strength and acid build ups, shrink and oncologist. My oncologist should be a good one. I’ve been going crazy thinking about it. I had a CT scan done last week and I’m just waiting for the results.

Anyways. Its always a weird feeling knowing that you are getting older. 10 years ago I lived in Nashville, TN. It was a get back on my feet move. After a fight with cancer a few years earlier and going totally broke. 5 Years ago I was trying to bounce back right after chemotherapy and surgery. I had a major case of chemobrain so I do not remember much of anything at all from that time period. Now I basically have a handful of friends that I consider close, an ex who will never shoot me straight about anything, a brother who is extremely selfish and people I consider more passersby. Maybe I’m more irritated and irrational. Yes, we all grow up and move on in life. Kids, husbands, wives and jobs. I get it. Yes, I’m single. Its not fair for me to bring another person into my life and then possibly just die on them. Thats not right. I’m single for a reason. It is very depressing and lonely. This is the what happens when your life can only sit still in time while everyone you know moves along. I’m so sick of people I know acting like I have all of this free time or non pertinent shit to do all day because I am single or didn’t fuck up and have kids. My job is staying alive and trying to fix what my body cannot seem to do on its own. I cannot drop things on a dime. I have to plan months in advance. While I’m at it my friends really are self centered assholes the more I think of it. I have friends that haven’t even crossed the border to see me at my houses/apartments despite not having lived in Minnesota or Eau Claire for 7 years or more. Why am I the one that always has to travel or make the plans? That is total bullshit. A couple of months ago I stopped texting or calling everyone unless they get a hold of me first or are extremely close to me. It’s amazing how much I have to do to keep friendships afloat. Maybe a dozen people have even texted me without me instigating it. So yeah I’m having a lot of self realization and finding out who gives more of a shit than others. You would think that with my health concerns people would be a little more open and thought conscious.

Update 02/04/2015

Not a whole lot is happening at this moment I am still on a chemo holiday. Tomorrow I go to my rehab appointment to work on the muscles in my back and shoulders. Since I have no chest wall the extra acids build up in other places. Its been pretty painful. Overall though I’m feeling pretty damn good. I get the aches and pain but I still get the massive sternum pains. Next month I will have another CT scan. If nothing has changed then another 3 months of no chemotherapy. If only one or two of the trouble tumors has grown then we will either do nothing for another 3 months or possibly radiation or back on chemotherapy. We shall see.

Hey Im still alive! 01/14/15

Hey yall,
Yes, I’m still alive and kicking it. A lot has been happening as of late. I just moved into my folks new house outside of Madison. It has been great. I basically have the basement to set up as a man cave. I’ve been really tired and beat up from over doing it, but shits gotta get done. More rehab appointments have been made and they have been fantastic. I’m starting up with the UW cancer psychologist again soon. Just trying to get back into the normal swing of life again. It’s been easier to move along acting like nothing is happening as of late. While there is still quite a bit of pain and severe aches the management of it has been fairly par for the course. I feel good though. Compared to the first month off and time on chemotherapy I feel like a Billion dollars. I haven’t been on Chemotherapy since I stopped in August. Another CT scan was taken at the end of December. Results were positive for knowing this is a terminal condition. The next step is another CT scan at the end of February or beginning of March. If only the one tumor that on the previous 3 scans has grown then we will do nothing and scan again in 3 months. If that scan has the same result then we will attempt Radiostatic surgery/chemotherapy. I will lose more lung function but it will allow me more time to actually live life. Now if the next scan has changed to more than just the one tumor we will proceed right away with doses of Gemcitibine until it stops working all together. I did see one of my oncologists, Dr.Kozak. He completely agreed with my assessment of the next steps and also the suggestions of UofM and Mayo clinic which were identical to mine. When the Gemcitabine stops working its on to Prozapanib and really being sick. Basically I’ve got to enjoy what I’ve got left in the tank. Do yourself a favor and look at your life as say, “I’m so happy to be healthy”. Also I know that I complain a lot about a lack of sleep, insomnia and anxiety. The good part is a lot of that has subsided for the time being. Things are good despite some obvious hiccups. My memory is still absolute trash.

Same old shit 11/23/2014

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 explanation 10/29/14

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
Liver cancer
Lung cancer
Metastatic cancer, including cancers that spread to the brain, thyroid, lung, liver, spine and adrenal glands
Skull base cancers and tumors
Spine 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.

Mayo and UM trip 10/28/14

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?