Port/PICC line/Needles 08/19/14

So I had chemotherapy yesterday. My veins are not recovering and agreeing with the nurses and I. They get in there and the needles just wont get into the veins. I take Lorazepam in the evening before I go into the hospital for treatments because my needle anxiety has become so extreme I have nearly fainted in the chair. After this next cycle of three weeks I will have to make a decision about inserting a port into my body again. I am absolutely terrified of them. The last port I had almost killed me. Whomever was looking at the x-rays of my chest over the years didn’t see a long tube that broke, got stuck and grew into my vein in my neck. I complained all of the time of my blood pressure being goofy and they couldn’t figure it out. Then I went back in to get and x-ray to determine whether or not I had pneumonia(which I come down with twice a year religiously). This was all over a period of 3 years that I had the port in my shoulder/neck area. Well some technician saw it and told my oncologist who said it had to come out right away. It was a Friday so the procedure was scheduled for Monday morning. They said if it got to the heart it would more than likely get stuck and possibly kill me. So flash forward to that Monday morning. They laid me butt naked on a table with a live xray machine running over top of me. They saw that the tube moved through my heart into my lung which was even worse and making the procedure even longer. They took a long tubed camera with a hook on the end and ran it from my groin up into my left lung and pulled the 4 inch tube out. During the procedure i was awake, but heavily doped up. I was able to watch most of the procedure on the TV screens. Which was freaking rad. They hopped me up with tons of anxiety medications, so I was relatively calm the whole time. Afterwards, they wheeled me into a room and had to wait 4-5 hours with pressure on my groin to make sure I wouldn’t bleed out or rip anything. I was extremely sore for a few days, but my body regulated my blood pressure almost instantly. After knowing I could have died from that puts me a little on edge about the addition of a port to my body again. The other option is a PIC line and I do not trust myself not to rip it out on accident at some point. Especially, since I am more active than most cancer patients. Plus, with my history of completely odd and random things that happen to me medically I would probably wind up with a moldy line, infection, or one that just sucks. All signs point to a port again and I’m just not going to do it despite my absolute fear of being jabbed every time in. I still believe that my veins will recover a bit more over the month long break. I am changing my diet a little and really eliminating sugars again. I’m also back to a gallon of water a day. So hopefully that will aid in a quicker recovery time. If curious about what any other items I mentioned are take a quick look at the links I have listed below.

Lorazepam: http://www.drugs.com/lorazepam.html

What are PICC lines?: http://picclinenursing.com/picc_why.html

What are ports?: http://lookingforcure.org/index.php?option=com_content&view=article&id=103:use-of-port-a-cath&catid=42:chemotherapy&Itemid=55

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Things on my mind. (Not cancer related, but life issues) 08/19/14

There are a lot of things I want to cover in this post. I will forewarn that it is sensitive topics and it might rub people the wrong way. If you know me you know I will always say my piece.

Robin Williams suicide once again brought up the issue of mental disease and depression. I for one believe suicide is for pansies. Before you jump down my throat or call me a douche and move on let me explain my thoughts about this topic. Depression is very real and in all types of forms. Some people are strong enough to know something is wrong and get help themselves. Most people are not that strong. Those are the people that need the most help and mask their symptoms from the World. Now the crowd you keep close to you are also the ones that should be able to say something to you. If you can get help and don’t then it is your own damn fault. There are so many tools and ways to vent out to anyone listening out in the World that there are no excuses for temporary relief. Hell, I know people that vent all day long on facebook and I don’t say shit because I know it is their tool to help themselves.  It took myself a very long time to cope with the fact that I had extreme PTSD, depression and anxiety. I fight through them every day with doses of Effexor and monthly talks with my cancer therapist. I knew something was wrong and so did everyone else around me. Now in the case of poor Robin Williams he knew he had problems. He went got help then didn’t go back when things got really dark. It is truly sad when anyone dies, Look at the amount of time and wealth he gave to the troops and various children’s organizations. Some how some way he felt like there was no help for him despite his multiple and various connections to health groups Worldwide. Imagine the disappointment of all of those sick kids and troops that he brought so much joy to. It’ll never happen again. He is now forever a thought in peoples minds. All of those kids he tried to cheer up and help beat their diseases. The message in the aftermath is sad. I for one am a firm believer that there is always help available for any circumstance out there. Now lets move on to the “What now?” of the said suicide. Most insurance plans and settlements are then null and void screwing over your loved ones. Have fun with the bills kids. Not to mention the mental anguish and turmoil those close to him have to deal with the rest of their lives. Imagine being a child of a parent that had committed suicide. “Why?” and “What could I have done?” will be with them the rest of their lives. All on top of the bills left behind that will be out of their own pockets now. This is why no matter how far down I get I will never contemplate Suicide. In the end, it is worse for our loved ones than for ourself if we take our own lives. Granted I have a completely different take on it than most. My family is not close. I do not have a girlfriend, wife or have been divorced. I do not have kids (that I know of). My family is not close to me outside of my grandmother and parents. I do have two amazing kids that I love dearly in my niece Layla and nephew Jackson that are my brother and sister in laws kids. I would never want them to know that I went out like a bitch because I couldn’t handle fighting my inner turmoil and a terminal disease. For some its hard to understand, but everyday I can walk no more than ten feet from my bed load a rifle and blow my head off. Its really not an option in my mind no matter how far this disease takes and drags out of me. No amount of pain of mine is worth my loved ones pain. With that said maybe a dying mans perspective on a very sensitive issue will encourage some to atleast talk to someone or make an appointment with a shrink atleast once. We all have shit to work on. If not e-mail me I’ll talk about anything itsjuicetime@gmail.com

My next gripe is the ALS water challenge. Maybe I’m just in a grumpy mood from chemotherapy today, but I do believe the best intentions with this “challenge” of a cold shower have been a long time lost by now. Has it really brought that much more awareness to an amazingly terrible disease. On another note stop calling it Lou Gehrigs disease. I find that insulting to the thousands that deal with ALS. The fact that they raised millions of dollars is absolutely wonderful and what their intention was next to awareness. Unfortunately, I don’t believe people have really donated something besides dumping a bucket of perfectly good water(sorry third world countries). Maybe its a personal thing but I atleast check fact sheets before I donate to anything. I have actually been challenged twice to do it and I said via FB, ” I’ve been nominated twice for the ALS Ice Bucket challenge. It isn’t happening people. I am donating my pennies to my own medical bills. The millions they have received so far will do them just fine. So I’m nominating everyone on my friends list to light themselves on fire or donate to the The Richard M. Schulze Family American Cancer Society Hope Lodge” also with a back story of ” If anyone is curious the place I linked is where I stayed rent free in MN by the U of MN when I came back in 2008 to get treatments and the long shot surgery. They are amazing and I encourage everyone to atleast check out their pages or donate $10 some day. I couldnt have made it this far without them.” My intention isn’t to take away anything from the ALS challenge. It is an extremely worthy cause. That leaves me glad I didn’t develop it. I just got my own broke ass to deal with. lol. It just seems to be a complete fad that Charlie Sheen summed up perfectly. Please check the facts on the official web site before either doing the challenge or passing on it completely. ALS fact sheet: http://www.ninds.nih.gov/disorders/amyotrophiclateralsclerosis/detail_ALS.htm

Let me preface this next gripe with the fact that I could give a shit about race and a persons ethnicity. We are all human and individuals. The situation in Ferguson is disturbing. Police need to be held accountable. Here in Wisconsin a law was passed that all officer shootings are required to be investigated by private organizations not associated with the unions or departments. Do we know the story or facts behind what had happened with the Mike Brown shooting? Absolutely not and I doubt we ever will. Do I believe this sets back race relations in America? No. The needless and careless rioting did that. I’m surprised more people weren’t shot by store owners protecting their property. It’s sad people are shot by officers everyday and it may just be me missing it on the news but its always seems the situations where it is a white officer and a black individual are the ones targeted by the media. It never seems to be about a hispanic, asian or a white person receiving all of this attention. Regardless, I find the whole situation disgusting. Innocent people are being hurt by senseless violence and it has become a militarized zone for the most part. When the National Guard are called in the opportunist and assholes causing issues are going to get into a World of pain.

If this has left a negative view of me in your mind then I am sorry, but these are things that I have thought about to quite a large extent outside of my personal life bullshit lately. They are also things that should have an open dialogue among the masses. Unfortunately, in America things like this are always hush hush. Keep it in your own home type stuff and its extremely sad. My advice is always to speak your mind after collecting a well enough determined and some sort of fact based opinion. Never be afraid to learn, grow and add/change your opinion.

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Been awhile. 08/15/14

Well I have been crazy busy and not able to update this from my phone. My phone is pretty much on its last leg. It works when it wants to. hahaha technology. No excuse though. Things have been pretty up and down. I’m still having my good days where it seems like things and just sluggish, but then there are the bad days where the wheels feel like they’ve fallen off of the truck. Currently, I am doing fairly well according to the scans. Two more tumors shrunk and the rest are holding still. My lungs though are getting worse in the sense that I’ve developed a small cough. There are three possible reasons for this: 1. I have asthma. 2. The cancer is in the bronchials. 3. The residuals left from my radiation treatments are still lingering. Regardless, it sucks and will wind up sticking with me for the rest of my life. Talk about annoying.

As some people know I live in my folks house. Well, they finally sold their house and couldn’t find anything they liked to purchase and are still out there looking. We wound up moving all of our stuff into storage a month ago. I now am living at my grandmothers house until my folks find a house they like. Come Monday mornings I drive into Janesville for the day and get my treatments. Its an hour and a 15 minute drive each way. Kind of sucks. By the time I get back though it is time for me to eat and pass out so the timing is a bit convenient.

I haven’t really been doing much of anything to help improve my health. I can’t go to the gym so I go for walks. I haven’t made or brewed the Essiac tea in months, the natural ground up green tea powder i haven’t had either, and I haven’t really cut down on my soda intake. This will all change when I can afford to purchase it all in a week. Some times people don’t understand how expensive it is being a cancer patient. Explains why I live in a basement lol.

OK I gotta run. I’ll update more later.

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Recent TTM and IP autos

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Daniel Robertson
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Alex Meyer
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Matt Stalcup, Tyler Hollstege, Dylan Covey, Lou Trivino
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Austin Wilson
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Edwin Diaz

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06/11/14

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.

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06/09/2014

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

Definition
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.
Description
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

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06/01/14

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.

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