Chemo Session #1 - and the end of radiation

The end of radiation is a very happy occasion, the decadron taper is almost over (that;s the pill for the seizures that keeps me up at night, and the radiation itself stops tanning my white ass. In addition, my digestive system tries to go back to normal. This time around chemo is 3 single sessions a couple of weeks apart so that I get a brake form the weird meds and so that my digestive system and the people in my head all get to take a brake. Yesterday was day 1 for session 1 of chemo.

You get there 1 hour ahead of your session for blood work, which when I looked at the results I was horrified. Everything was below normal ranges; you must understand that for Mr competitive was not going to do so either the nurse fiercely patronized me or it is true, I was in the high % of "under the circumstances" your Numbers are good. As far as I was concerned I need more protein in my diet and fast 30 minute IV flush and 30 minute poison, and I was out there. Compare with the 5 hour sessions from the previous protocol this was looking good. No Nausea, stomach confused but not much and an intense desire to sleep.

That got confused because I was almost at "0" with the steroids but I needed to boost to 16mg daily (which is getting up there, for the day before, during, and after the chemo. THEN I go back to 1mg... confused?? you need a power point presentation to follow this fucking thing, but of course I have one so we are on the way out of decadron...YEAH!!!

In the process St Paul bought me for one of our bicycles a contraption that I can use to get my legs back in working order. When the decadron is working, it chews up your quads and they are simply useless, so a little physical therapy is in order.

PS I would like to thank both Eileen Nightingale and my brother for keeping me company and sane during the weird ass week...much appreciated as always

well that is an interesting twist.

Yesterday, we had an appointment with the brain oncologist, yes they one I really had issues with. This time around, we had about 20 minutes with the nurse practitioner who asked very good questions and was very insightful. Then, The "Dr" comes in. it is like somebody gave her a serious dose of chill...Much more civil, still and ass, but at least a conversational civil one.

So the current status is as follows: We have a node that glows (cancer) on the left armpit, We still have the people living upstairs in the brain, although many a shrunken in size and at least allowed the pressure to subside. It seems that the pressure in the brain is what was giving me the headaches, the light flashes (optic nerve issues)We also have the one in the back side between the spinal cord and the sectum whatever name it is. This last one we have been radiating for 10 days. Tomorrow is the last day of ass radiation....

On Thursday I start chemo. The interesting thing is that the original idea of the chemo was to take care of the armpit and ass cancer, but it seems that there is a study out that says that the chemo agent they are given me will go up to the brain cancers and hopefully reduce or destroy. I will have 3 sessions of this chemo, one every 3 weeks and the dosage of the chemo poison needs to be adjusted to see how it does with the brain cancerous masses.

As an aside, Now I have like dust bunnies running around my head because the debris left behind is not cleaned by anyone...I have issues with that!

This new chemo treatment has be doing massive amounts of a particular steroid that I hate and that I've have to take for the last 3-4 weeks. This is the reason why some blogs should have been edited by someone NOT on drugs!

Another 4 am...

What the fuck... I am going crazy seeing the first plane (red eye of course) landing at Logan at about 5:05am I deeply apologize to all of you who suffer from insomnia because it totally absolutely bytes. Except a certain person who mmight be calculatin how many hertz the house is vibrating at...you have issues and nobody can solve those.

On the other hand, it is like having 30 hours in a day. I use to drink coffee in fairly large quantitites, mnow it is like IV straight to the vein! yummy

and that is one ugly MOFO

Presenting the sacrum...who knew. I have mispelled, misquoted, and in general called the damn bone everything but what it is. So to those who ask... My Sacrum hurts... that is the bottom line.

Can you tell the steroids are clearing up? I can actually insert links!!

Walking the Sanctum

We have done 3 radiation sessions so far, and my skin is beginning to have a certain tanning glow. In addition, sitting down is starting to become a touch annoying since there is this weird pressure back there. The nurse at BI (who I think rocks the world) gave me this incredible high tech pillow to sit for the long ride to NH and it was excellent. However, I am doing so much sitting and walking..(well more like Tim Conway) and it seems that I keep slowing down more and more when I walk. OH GOD I am walking like my mother... 1 speed and it is reverse!.

On the really good news front, I am on the last taper of the steroids so my brain will go back to normal soon...maybe I'll be able to speak in complete intelligible sentences for once!

The new fry cycle

Sometimes you wonder how medieval a system of torture this radiation thing is. Well let me tell you, modesty goes very far out the window. The radiation for my pelvic-sanctum area requires 5 zappings... 3 in the posterior for which I am already developing a tan (ouch) and 2 on the side. The ones on the side are the most intense since they don't interfere with any other organs other than the cancer. The funny thing is that I have to put lots of moisturizer on the side because it looks crunchy peeling I had too much fun at the beach NOT!

Peace and Quiet

At last...we are in Waterville and it is just quiet and beautiful... Slept 6 hours straight which these days in excellent. Repositioning all my Steroid purchases and organizing my room. What can I say an incredible OCD day awaits....HURRAY!

By the way, 1 more step down on the steroids starting today, thus sleep should be easier.

A shout out to my insane brother and wife (happy b-day!) who are driving to New Orleans for Mardi Gras...HAVE FUN!

Once again Logisitics Eileen

Saves the day...Dr Dude appointment is at 2:30pm and the radiation session is at 3:15pm...somehow my head is in space and Eileen says we neeed to move...She is calling cause ethis is getting to tight ... Bottom line she is escorting me on a mad dash through the hospital so that I can reverse the order of things...radiation first then Doctor. Zap my ass and run back to the regular (now 2 hours late) appointment, where I will start chemo in 10 days. No more Jungle drug; now it is a common protocol for which I needed of boost of B12 vitamin and lots of folic acid. Let's see how this goes, at least it is a lot easier than the last two times.

What / where is my head at?....

It is simple really.. I have developed the most severe case of OCD in the world...I live cleaning and fixing. As in the past, working from home and the hospital makes it bearable since I can actually think.

In the fun news department, we are considering taking the train cross country. I think that is on the agenda for March.

I have heard via email from a handful of long lost people and it has been very interesting what they suggest I do for my next bucket list event.

News from the visit with "mother" will be posted during the day when I am most lucid... Fraud is still taking notes and the event happened 5 days ago.

Where we are as of right now...

Just so that we are all at the same page in the same channel. We started the next bout of radiation therapy yesterday. As you all remember from previous times, it is a long cold table and semi-nudity. It is quick, and not painful. We have 9 more of those treatments (Rectum-Sanctum. Also of note, we see the chemo Dr to see about those magical jungle pills.