Day 5 (WEEK ONE COMPLETE)

My last bag for the day is about empty. Boh picked up some awesome sandwiches from Panera Bread and we nom nom nommed them vigorously. He left to go to an orientation just before my IV started to infiltrate and become swollen. I ignored the swelling because it was minor, until I noticed how swollen it had become. They had to move it to the other arm followed by 5 injections to protect the swollen tissue. It was rather unpleasant! Alas, no harm done, I'm looking forward to an IV-free weekend. Maybe some swimming. I will have to come back for 2 hours on Tuesday, but the next 2 weeks will be easy. I may even go back to work a little. I have to keep my income at least partially incoming so I do not fall behind on bills. I did get an organization to help with a one time payment to my rent. I'm very happy about that, but I do have other bills.

My veins are free! FINALLY! I'm just waiting on Cliff to swoop me up from this place. I am still trying to find some way to get my lab work and PFT tests paid for without insurance. They are very expensive and nobody will bill me later, not even the hospital. It has been quite an ordeal with very limited results. I will be busy this coming week trying to get this stuff sorted out. I definitely need to get in touch with someone who can help and not just pretend by offering useless information about private insurance I can't afford or just telling me to "bite the bullet" and pay. I have no bullets to bite ma'am. I have no secret funds to pull from.

As for my mother, she is in her own battle for healthcare. She was promised immediate medicaid coverage upon firing her attorney. now that she has complied with the demands of these fascist bureaucrats, she is left still with no coverage. The retro pay she was entitled to is no longer on the table. I can see the faces of our government laughing at the profit and fortune they receive from people's misfortune. I can't pretend I don't know what is going on in America. We live in a country that lets it's people die if they have no money for healthcare. They will save you in the event of an emergency to abide by law and to avoid appearing heartless. Barking at you for income and paperwork as you lay dying , "Can you pay us something? Anything?". "You certainly didn't expect us to care about you for free did you?"

I won't end this entry on a low note. I can only control what I can. It is a shame that I can't be proud of my own country but I am still surrounded by good people and I'm counting my blessings everyday. I see Cliff in the parking lot, headed inside to pick me up.

Much peace and love to all!

~X~x~Mat

Day 4

I just got out of chemotherapy. Cliff brought me in the morning and Boh brought me a delicious egg sandwich around noon. Whilst engulfed in the amazing taste and texture of the yolky creation, I was interrupted by a voice from another patient. "Can you taste your food?" The old woman asked coldly. "Yes..." I answered. She hesitated before suggesting that I enjoy it while it lasts because soon everything will taste like metal. "Thank you for that." I muttered. So nice of her.

Boh had to leave for an interview with my manager. I have referred him to them. I'm waiting for him to pick me up and I'll spend the night at his house, and he will bring me to chemo in the morning for my last long day for the week. It is closer to chemo than going all the way back home. Besides, I don't want to go home right now anyway. I'd rather have some time away from the same 4 walls.

Just before I my last bag of chemo for the day was finished. A man next to me overheard me telling the nurse that I couldn't afford the nausea medication. She offered no solution, she advised that I "have someone buy it for me." The man to my left handed me a 20 dollar bill. I thanked him sincerely. It's great that there are some people left who are happy to help without anything in return.

Day 3

Today was not without it's obstacles, but I did get over the Wednesday hump rather smoothly all things considered. Still very minimal progress with medicaid and getting my health insured, but not for lack of effort. I did make phone calls, which mostly lead to brick walls. I did reapply for medicaid in a futile attempt to get the ball rollings. My next plan of action is to go directly to Social Security and speak with a social worker.

Chemotherapy it self went well today. So far the side effects are minimal, although I do lose a lot of energy and my heart is quick to beat rapidly. I'm more distraught by the emotional Tilt-A-Whirl I'm on. The uncertainty of the future and the lack of control I feel I have on it. I can't say for sure what I should be doing. I can listen to the doctors whom only see me as a paycheck. In fact, they only want to help me if I can pay. I also have reputable people in my ear as well as other resources telling me that doctors are not being honest about everything. I reluctantly believe them and have an uneasy suspicion that there is more than just a coincidence to my very sudden cancer case, only a year after starting HIV medication. I was otherwise completely healthy in every way. I have to say it is quite the coincidence.

What kind of world do we live in when we can't have faith in anything without fear of anterior motives from disingenuous governments and organizations that pretend to care. The science of cancer is much less important than the politics of cancer.

Alas, that kind of thinking can get me into panic mode. My only plan now is to take what doctors say and a bit form the holistic side as I stand firm in this battle. As dramatic as it may sound, it is 100 times that in my mind. This is my life on the line and I'm only 23. Help is not readily available as I once thought, but I do have family and good people around me. They know who they are and I love them for them. Regardless of where this tragic mess meanders, I will be grateful. I intend on getting through this and living while loving my life to the best of ability.


After chemotherapy Boh and I went to the park!

The following are pics of Boh and I having carefree fun on the swings after because we can do that:

Day 2

Chemo went pretty smoothly today as far as side effects go. Cliff drove me around 9 and Boh stayed with me through the day and kept me from getting too down in the dumps. I did get plenty of fatigue and tiredness but not much nausea. The only stress was when I was nudged by the staff to contact medicaid. It took me several tries to get a live human being on the line. She spoke broken English in a very heavy Spanish accent. She showed no signs of compassion and was of no help to me. She seemed to have made things worse by insisting that I had applied for foodstamps when I only intended on applying for medicaid. As a result, I now I have to be interview for Foodstamps. (which I didn't need to renew and had no idea that I reapplied for.) I was unable to speak to her about Medicaid at all. After the phone call, a nurse flat out told me that the doctor would not order my next round of chemotherapy without having Laps, tests, and other things payed for. I can't afford these things as they cost hundreds if not over a thousand dollars. So what will happen after the 1st cycle of chemo when I still don't have medicaid? I'm going to be sent away without treatment for cancer? I'm still dumbfounded. I know it will get taken care somehow, but this just doesn't seem right to me. How can people be treated like this?


After the long day of being pumped full of toxic radioactive chemicals, Boh and I hung out for the rest of the evening. We dyed my hair with a bleach stripe down the center to my rat tail. We decided together on a whim. It was fun to put my mind back on something insignificant in the midst of all of these intimidating circumstances and decisions staring me in the face. Besides, it's probably going to fall out anyway! We played video games, watched Pokemon, and ate Subway before he went home. He's quickly become one of my favorite people. I love that I finally have a friend who isn't a selfish greedy backstabber. He had an interview at my workplace yesterday which I referred him to. I hope he gets hired, it is the least I could do to repay him for being a real friend.

I'm very thankful for Cliff, my family, and everyone who has been helping through this. I still have to wonder what happens to those people who have nobody? I can't help but be bothered by this crumbling excuse for a medical system.

Day 1

I'm pleased with how quickly the treatment seemed to go by. I'm thankful that Cliff was able to take me to and from, bringing me delicious chickeny salad goodness for lunch. All evening has been spend in contemplation. I suspect that my preexisting HIV infection could be to blame for my testicular cancer. It's very hard not to blame myself at times, although I do realize it doesn't do any good. If I could change just one thing it would be my health. I would like nothing more than to stick around and live a normal healthy life with those I love, to watch them smile and be happy is the only thing that gives me any real happiness. I don't desire riches or fame. Those things are nice but unnecessary for happiness. In most cases, it truly is the choices we make that allow us to fully render happiness in the future. I'm still very hopeful, but if I died tomorrow I would die thankful for having lived at all.

Chemotherapy overview:

I'm home from my first session of chemotherapy. An IV was started around 8:30am and premeds were administered mainly for nausea and hydration. Soon after that, I saw Dr.Ross. Everything he told me sounded good except that he wants to have a cat scan every 3 months. I have only had 1 cat scan and the iodine injection made me feel like my insides were drowning and my veins were on fire. It was short, but intense enough to deter me from accepting the idea of one every 3 months, not to mention the cost and lack of insurance.

Once the chemotherapy was started, I didn't feel a thing. I was surprised at how fine I felt. There are 3 drugs throughout the day, by the 3rd I did notice a few things. I was frequently having to pee although I not had enough to drink to compensate for what drained out in the bathroom. I grew pretty tired which I blamed on my lack of sleep at first. I sat in that same chair for treatment until about 4pm. A very lengthy stay indeed. After leaving I did get a slight soar throat and it became apparent that the fatigue was related to the chemotherapy.

Today Cliff was my fateful chofer. Tomorrow I will be graced by the presence of my awesome friend Bohdan Chaffee, whom I refer to simply as Boh.

The Day Before...

At Chili's with Cliff

Tomorrow I am planning to start chemotherapy. I spent today with my partner Cliff. He and I went to the flea market, shopped at World Market, and then ate at Chili's. It was a nice day just spent with each other enjoying ourselves. We know it might be the last day that I can fully enjoy anything for a while, because chemotherapy is unpredictable and the side effects could be debilitating.

We will make up early in the morning as the chemo is supposed to be started at 8am and last all day long. I'll just have to keep myself busy. I'm feeling a little weary about how the chemo will effect me once it starts flowing through my veins. I imagine that it will make me feel awful. I'll have my partner and my best friend taking me to chemo and staying with me through the sessions most of the time. I'm very grateful to have people willing to do so much for me right now.

Happy, sad, worried, anxious, tired, wide awake. I'm all of that right now. Nothing to it but to do it, here we go.

Diagnosed with Cancer

When I was diagnosed with Cancer in July 2012, I didn't consider that receiving medical care would be an issue. I've had to jump through hoops in order to receive the treatment needed to keep me alive. I am a working member of society with no health insurance. Alas, I can only be thankful that I am getting this treatment even with the absurd bills and hassles. I'm told that although the cancer I have is "aggressive", it was caught early. I have a very high chance of survival and I am quite hopeful.

 It was only about a month ago that my mother was diagnosed with stage 4 Colon Cancer. Having no insurance herself, she was sent home where her colon burst leading to an even more deadly situation. She was finally given the treatment she needed to keep her alive, but is still awaiting medicaid approval before they will move forward with chemotherapy. I can't help but be disgusted with the American healthcare system after what I've experienced through all of this.

I'm writing this blog to help myself as well as others dealing with Cancer. I'm not sure what to expect with chemotherapy, but I know that it is hard on the body I am expecting it to be a challenge at times. I plan to share updates on how this toxic treatment effects me, as well as updates on my mother's condition, and various other things. I'll be posting as often as I can to document this experience and hopefully tell a story about how I kicked Cancer's ass. I hope that I can learn some about options available for the uninsured. Donations are encouraged and appreciated as well.