Severe Pokey Trauma

I haven't felt great lately. I have been mostly too tired to really get up and do anything, including write in this blog. I feel okay for the moment so I'll take this opportunity to jot a few lines. I had chemo today and had to be poked a total of 5 times. I never minded needles before, I figured I'd just get used to them but after the experiences I've had with them I am sick and tired of being poked. So many times the vein is missed or there is some malfunction. I have too many dots on my arms to count. Today was horrible, the first stick wouldn't give blood and left a painful bruise. The IV clotted and a new one needed to be run. The 4th stick caused my vein to swell. The 5th was successful, but by that time I was pretty agitated. I just need to make it through one more cycle without my veins collapsing or infiltrating. They are becoming more narrow and discolored because of all the chemo.

I had a fever today and it's just now teetering back to normal range. This is exactly the same as the last cycle. At the start of the 2nd week I had a horrible sore throat and a fever later that night. I got the same symptoms this time but the sore throat was less severe. My main symptom now is just fatigue. I get home and free fall into the bed, my limbs go limp and I don't want to move for a few hours.

Cliff has been very good to me as a partner and Boh has been the best friend I could ever ask for through this. Family and friends have been supportive too, without all of these people things would look much more grim right now. If Cliff had not come along, I might still be with my ex David and I would be in no position to battle this. He was a horrible boyfriend and a disgusting person who didn't care at all about me. I've met so many people with those same attributes, I hope he is the last. It's always good to reflect on what's going right in your life especially when it seems like everything is going wrong.

My mother seems to be handling her chemo okay. She started a couple of weeks ago and she sounds very well so far. She told me her doctor said that her bag could be reversed in a year. That is assuming her treatment yields good results and the cancer goes away. I'm not sure how likely that is yet, but I will post when i know more. For now I am going to appreciate every moment I spend with her.

New News

I found out Monday that my Doctor has decided that my cancer stage is not 1B, it is more like 1S. This is because my blood work shows that my tumor markers are still elevated. This means that there could be more free-flowing cancer in my blood stream than he and his colleagues original suspected. I'm not surprised actually, something told me another pitfall was on the horizon. It sucks. I had to cancel plans to see fly to Tennessee and visit my grandmother over this sudden extension of treatment.

I'm still struggling with medicaid and the "people" at the disability office. I received 8 thick envelopes from Disability determinations to fill out and return. It's just ridiculous. They are barely treating me as it is and my medical bills are over 10,000 now. My mother had to wait for medicaid before she could even start chemotherapy and was told by her doctor that because of the untimely manner in which Medicaid acts, he might not be able to administer the treatment in time. How sick is that?

I feel a certain way this morning, it's 5:30AM. I have been up since around 4AM. Cliff woke up super early to go into work to set up some things before the store opens and I couldn't fall back to sleep. Just thinking about how I can't wait for this to be over and I hope and pray it doesn't come back ever. I don't want to end up like one of those people bound to a chair, jobless, sick, connected to some implanted device perminently. I apologize if that is too harsh for the reader but it isn't a pretty picture to paint. I could be doing a lot more if treatments and check-ups were not constantly consuming my time, even at home I have to think about appointments and worries which takes time away from productivity as well.

I did have some fun with Cliff and Boh at the beach over the weekend. Then I stayed at Boh's to get to and from chemo Monday-Wednesday. We had fun just relaxing, even at chemo he waits with me and the time goes by so much faster. His mom's car inconveniently broke down over the weekend so getting to and from was an ordeal these past few days but somehow he managed to find rides and I was there in time everyday.

So in the days I stayed at Boh's house he played a song on his piano that I found really captivating and beautiful. I assumed it was from the book in front of him but it turned out to be written by him, for me. It had words to it and everything. Quite amazing and beautiful. The song is below. Very few things geven to me have caused me to become teary eyed, but this one certainly did. The rest of his album is great too, I encourage you to listen.
The song is below...

There are some pictures below from last week when Boh and I shaved our heads, and some more recent pictures. So much I wasn't able to blog about, so this blog bounces around a bit. We also baked Halloween cupcakes for the people I work with as a thank you for donating and trying to help me. Boh's birthday was on the 18th and although he was at chemo with me most of the day, I bought him gifts and we had Curry and Birthday Blast ice cream that evening. I bought him an omlete pan that encloses making it super easy to cook. Also got him a few little things but the main gift was a picture book I created about our friendship.

Waffle house with Cliff & Boh!

 OFF WITH YOUR HAIR!

Halloween Cupcakes!

My favorite niece Kailey!

A very naked little girl kissing a lamb on Boh's mother's piano!
I love it!

I will kick your butt cancer cells! I WILL!!

                              Happy Birthday Boh!                          Creamy Cheesy Cheesy Cream!

Sleepy Boh

Finished off the night with delicious Curry!

Crunch time

I woke up at about 5am and could not fall back into dreamland. That's OK because I am die for a blog update. I'll be typing this out on my iPhone as not to wake Cliff up. Maybe I'm too anxious to start making calls in the morning and getting things rolling. I still have a few things to straighten out before I know for sure that I will get my second cycle of chemotherapy. Yesterday Cliff took me to the social security office and we set up an appointment by phone to apply for disability and Medicaid. I plan to appeal the denial of they do in fact deny me. The denial will occur a few months down the line. The representative told me I have a very slim chance of being approved. I'm still going to push for it.

Later today, after I take care of business, I'll be making cupcakes with Boh! We're making them as a thank you to my employer and the associates of Merritt Island TJMaxx. They did an amazing thing that I totally never expected. They collected donations by selling hot dogs in front of the store to support my cause. A few employees also got involved and baked things to help out without even being asked or coaxed in any way. I was certainly moved at how thoughtful and cute it was of them to do that for me. I am still stunned but I so appreciate it. I won't disclose the amount. It wasn't a fortune but it was enough to help with some things.

Before the cupcakes and fun with Boh, I have to pick up my HIV medication. I also have to stop at Osler Medical to get a shot in my arm to stimulate the production of white blood cells. Apparently my last lab results indicated a very low white blood cell count. As much as I don't like the idea of forcing my bones to make more cells I cannot argue much.

It's now 7:01 and I'm thinking about French flippin' toast and eggs. Ah but there's no bread! Curse you pantry of breadless misery and disappointment! Curse Youuu!!! Alas, I must wait until at least 8 before I start waking the house with breakfast noise. Perhaps eggs and veggie sausage instead! :)

Shedding

I'll amend more to this post in the evening but I felt like sharing this now. My hair started falling out yesterday. It came out in a fist full from my rat tail suddenly. Today it seems to be progressed a bit more. The hair on my soul patch comes right out with a slightest tug. At this rate I'll be shaving my hair by the end of this week. Boh has agreed to shave his head as well to show his support. What friends are willing to do that? It looks like I will need to go bandana shopping!

Well, I never did get to add more to this post, but in the updated post above I've added pictures. My head is not completely bald, and so is Boh's. He shaved his head with me like a true friend.

The Beach

I went to visit my mother today in Palm Bay with Boh. Two of my Aunt's are in town visiting, and they're staying with my mother. I arrived to my first Aunt on the porch . She was doning out in a lawn chair with a cigarette in her mouth. She was almost non responsive, quite the unexpected minor for having not seen me in many years. My other Aunt was with my cousin at the store. I cannot stand my family. They are crooks and liars, hopeless drug addicts with no respect or consideration for anyone around them. I hope they distance themselves from my mother and I in the future because I want nothing to do with them. I knew she was high before I even got out of the car. I visited with my mom only a short while before calling my sister and deciding to meet her someplace for a hang out away from Palm Bay.

My sister happened to be right down the street from Boh's house so we high tailed it back to Satellite Beach. I was there only a bit hanging with my sister and meeting her new boyfriend before having to run back to Palm Bay to pick up Kailey. When I arrived back in Palm Bay my other Aunt with on the front porch in very much the same state as the first Aunt. She was complaining about not wanting to be there. I snatched my niece up, hugged my mom and left. I felt bad for leaving her in that situation with my aunts.

They may read this and to be honest I don't care. I love them because they are my family but they need very much to grow up and pick themselves up off the ground before they end up in it.

I spent the tail end of the day at the beach with my sister, her friend Ginger, Kailey, and Boh. The waves were intense and one of them swept me right off my feet. I scraped myself oon a rock pretty bad but it was totally worth it. We had so much fun just playing in the big blue ocean, it's more fun than most paid entertainment.

 

Sore Throat Madness

Yesterday I had chemotherapy. It was only 2 or 3 hours of infusion. Accompanied by Cliff, I sat being pumped full of toxins. I was having a sore throat but it was manageable, I asked the nurse to call in some numbing mouth wash. The time went by quick. Soon after I left Osler with Boh headed for Palm Bay to visit my sister, my throat pain began to increase. I asked him to stop at the pharmacy for what I thought would be a quick easy prescription pick up. It was not quick or easy. I was told it would take 40 minutes to fill. In this time I began to shake uncontrollably for the agonizing pain in my throat was increasingly horrendous. It felt as if I had shards of glass lodged in my throat. My eyes swelled with tears and my face was red from it. We headed back to Osler and I informed the nurse of the ordeal and she insisted that it was "just a side effect" and instructed me to gargle salt water and said that I would just have to "suffer through it".

We made it to Palm Bay and the pain eventually subdued. Boh got to meet my sister and we played the guitar a bit, chatted, then left. In the middle of the night I woke up in a sweat with a 101.9 fever and my throat was still quite sore. I had to call the emergency on call physician line and was able to be connected to the Doctor directly by some stroke of luck. He asked that I come in a few hours later. By the time I came in my fever was gone. The doctor told me I wasn't drinking enough water. The nurse had instructed me to drink only half of what the Doctor was now telling me I should have been drinking. He took blood and urine samples, then had me given a liter of fluids by IV. I felt so much better after the fluids were given. this tells me that dehydration is probably the culprit. He prescribed me antibiotics just to be sure there is no infection.


Click Play below to see a video of the life-giving fluids being drained from my body!

I'm glad the issue was addressed, but it should have been addressed much much sooner. I went to them with a severe problem and the advice I was given was to "suffer through it". A normal sore throat is uncomfortable, a normal sore throat does not make you turn red, shake uncontrollably, and cry. That was ridiculous. I should have been given fluids regardless with a medication that severely dehydrates and from now on I will insist that they do so with every dose of that stuff. I also plan to drink twice as much water from now on.

Laetrile (Vitamin B17)

After a few friends tipped me off about something called vitamin B17 (or Laetrile), I decided to do some research of my own. I found some very compelling evidence to suggest that this substance (or lack of) is the deciding factor in who will contract cancer. A documentary called "A World Without Cancer" by G. Edward Griffin explains how this nutrient is necessary to keep the delicate balance required for cells to divide normally. The food and Drug Administration cracked down on Laetrile making git illegal to sell or even posses, calling it "quackery" and useless for cancer treatment. Naturally our money hungry government would shun a discovery such as this in the name of politics and profit. There are countless other reasons it would be politically beneficial to ignore such a treatment. All of those dollars wasted on cancer research to find out it's a vitamin deficiency. Imagine the embarrassment of our arrogant government.

Perhaps the efforts made by our government to contain this idea were of a completely genuine nature, but I do not play cards with crooks.

The exact mechanism to which the substance works it is explained in depth within the documentary (included below). I have not tested it, and of course I can't prove anything, but the information is overwhelmingly clear to me. If nothing else, it is well worth trying. My mother's cancer is stage 4 and thus her chances are still very slim even if this Laetrile is legit. I purchased a 3 month supply for both her and myself. If nothing else, I can say I gave it my best effort.

I'll be going in to work today for my first day since starting chemotherapy. I felt pretty weak and unstable yesterday, my throat keeps getting sore. I feel alright this morning, let's hope it stays that way until closing time. : )

Smiley Day

In a grand turn of events I was able to get my nausea medication free though the Ryan White program. If not for that I would be risking dehydration and risking some very life threatening side effects. Such a relief. I also found a place to do labs for cheaper. Still no luck with the expensive lung test they need but I will get it somehow. This was my first full day without Chemotherapy. No premeds, no IVs, no cold teal death chairs. The night was hard to sleep through. I was fine until the evening when I got fatigued and a little nauseous. I took 2 of those pills and laid in bed. All through the night I felt as if my brain stem was being tapped by radio frequencies. It was a flickering electrical pulse of some kind. It was quite bothersome, it made me feel very offset.

In the morning I felt very disoriented and dizzy. Cliff and I ended up going to Target to stock up on healthy foods. Once I got out of the bed I was alright. On the way home from Target I felt very emotional. I'm not sure if it is the chemotherapy or just the sad realization and reflection unto what is happening to me. I think it's a combination of the two. I just felt at that moment all of the gravity weighing upon my shoulders. My eyes were heavy with the pressure of my own tears behind them but I was careful not to let even one through.

After we unloaded the groceries, it was time for Cliff to go to work. I invited Boh to come swimming and we did just that. We watched a movie (Smiley) while the sun set a bit before venturing to the pool. I didn't want the UV rays to murder my vulnerable chemo skin. I was surprised at how easy it was to swim in the pool. I didn't feel over exerted. I got out feeling a bit weaker, but it was very doable and enjoyable still.

I have been getting a lot of help from my family and friends during all of this. I have to send a shout out to you all, I wouldn't be dealing with this at all so well if it weren't for the love and support.

<3 Mat

MAT