Wednesday, April 28, 2010

3 down! And Mr. Bill ain't done yet apparently!

Gotta love it. Walk into the dungeon and the girls apologize and forewarn me they are running late. Here we go again, my afternoon shot. Nope because at 1:26, the tech comes out and calls me in apologizing for the delay. A delay 6 MINUTES-I'll take that any day and now just have 33 to go. Again so far so good but very early in this new game.

Forgot to mention in yesterdays post my buddy Mr. Bill has raised his ugly little head again and just won't let this rest-

Briefly, I am expecting my normal nurse practitioner to be working with me yesterday-this is the gal I spoke so highly of prior who I get along with so well and has been so helpful in my transition to the new Doc. He even spoke with her previously to make sure she would be available to babysit me through this part of the treatment with him. WRONG. I get a brand new NP yesterday and when I ask about it I am told that Mr. Bill will not allow it. Technically she does work for him although she sees patients on both sides and as I said, this was cleared with my new Doc previously. Unreal. The really bad thing,while I'm in the chemo room yesterday, she comes in and is very disappointed and thinks I have fired her too and asks why. Excuse me I ask, you think I fired you? Not a chance and I was upset here today when you didn't take of me and I told her that I had been informed it was again Mr Bill at work and quashed our appointment. Oh the look on her face-Boy is she pissed-interested to see what if anything transpires from this number he's pulled but again, he signs her checks I think.

Very sad and as another Doctor I have worked with for years I ran into in the halls said, "You? non-compliant behavior and difficult? Oh please! I'll send him some difficult patients if he were in my specialty. I knew he was a strange bird but to be acting like a spoiled little child............." Touche'

Tuesday, April 27, 2010

1st and 2nd's

First round of Carboplatin administered today after a plethora of delays that made me almost 3 hours late for my second radiation session, no lunch and no work. It continues to amaze me how often these Doctors can fall soooo far off schedule-and not really care. I had an appointment at 11 am at the Oncologist to do blood and a quick review of some scans they did last week and then go into the "chemo room" for my first in house chemo and that was to be followed with my now regular 1:20 radiation. Should be simple huh considering the Doctors actually spoke and had the nurses schedule this day. HA! Not a chance we make it as it after 1 when I am finally done with my exam and haven't even gotten to the "chemo room." I ask the nurse to call over to radiation and let them know as I am fully aware of how tight a ship they run as it was only yesterday we got my schedule finalized. Anyway as it is my first time with this crew of in house nurses I find out quickly the 1 hour I was told I will need for chemo is way off base today. They must test, poke and prod all the while trying to track down the proper dosage to administer. Hey there's a good idea! Again-you'd think this was done in advance. Turns out my Doctor was in a bone marrow procedure and rightfully couldn't be disturbed and no one else wnated to run the calculations-VERY FRUSTRATING.

Finally, it is 2:30 and we are jsut now administering the Carboplaitn and thus far, the mellow baby brother he is turning out to be and that is a good thing. During this time, the scheduling nurse is trying to figure out how we can schedule every week and she comes up with 12:30. I again remind her to take into consideration my 1:20 that is already set and I do not want to change, nor do they I find out, so therefore how can this time work to both see the Doc AND get my juice???? She having a very hard time with that so I leave it in her hands to figure that one out and she has until next Tuesday so we'll just have to see.

It is almost 4 when I get off the elevator in the dungeon and much to my surprise, I walk right in, get prepped and am on the Beast and back out the door by 4:30. A much better experience than yesterday as I think I actually dozed off after the stress of the earlier appointment. The combination of both the chemo and the radiation has me a bit tired tonight but knock on wood, at least for now all is good. Lets see how long we can keep this up!

Monday, April 26, 2010

Am I Glowing?

Been real anxious for a few days as today was my first true visit for treatment to the radiation dungeon! YIKES!!!! They forewarned me it was going to be a long day as not only do I meet with the Doc and we discuss any final changes, they needed to make any last minute adjustment to the "mask." I must admit it was not nearly as bad as I was led to believe and I posted last time. In fact the mask was not enclosed as I was led to believe and when I tried in on again and became aware of some spots that were uncomfortably tight, they simply cut them out. The final product is one I can see and breath perfectly well out of as well as speak to a certain degree yet keeps me immobile and has a number of markings on it that they use to align with the lasers. This in turn will ensure the points of treatment that have been programed out in the computer and are administered by the beast of a radiation machine go where there supposed too- ALLEGEDLY. Still seems as if there is quite a margin for error and this is by no means an exact science.

After about 90 minutes of this, I am told it is time! No more rehearsal, this is live radiate time and to say I'm not anxious would be a lie! I am asked my choice of a few CD's they have on hand and then am reattached if you will to the board as the mask is locked down over me and the techs leave the building. (Not really, they are very good about showing you where all the cameras are and that they are monitoring all of them so a quick wave of the hand will stop the treatment and bring one of them in immediately.) Regardless, when they fire up the Beast and it starts to rotate around you, it is a quite unnerving. The Beast consits of a large unit palced in the center of the room with a backboard and about a 3 foot diameter circular devise on an large metalic arm above your head that rotates around and under you positioning itself accordingly to administer its little rays. I am assured this is one of the most technologically advanced in the country and I have actually read and researched that very fact. It;s up there apparently so we hope it came with good training as well. In any case it is a far cry from the general area radiation they did jsut a few years back and that is good. I have been told my particular treatment has been broken out into 13 segments allowing for specified treatment areas to be irradiated causing less tissue damage to the surrounding unaffected areas as much as possible-or at least that is the idea.

Let's begin-There are numerous sounds as the Beast is aligning itself with the pre-programmed map created by my Docotor and the physics guys and then silence..............followed by a rather high pitched humming noise that is drowning out a good tune I'm trying to focus on. That, I realize, is the sound of the actual radiation dose being administered. It stops as abruptly as it stops, the beast rotates a bit counterclockwise to it's next programmed point and the process repeats....all the way over the top of me and around....13 times. Pau!

Actually at this point, very harmless. Nothing to see, nothing to feel during the actualy treatment except for the noises and watching the beast make its way over you during this 10-12 minute period and that's it. At one point I thought I saw a white flashing out of the corner of my eye, but the tech tells me there was no such flash. Apparently, depending on how much radiation is administered to a certain nerve, people claim, to have seen my flashes, rainbows or heatwaves but there is no such lighting ever emitted from the machine. of many oddities I'm sure to be experiencing over the remaining 37 visits to the dungeon! We'll just have to see when I actually start to glow.

Not sure if it was adrenalin or anxiety or if I truly did feel rather lightheaded and woozy after the procedure, only time will tell. It is now a few hours after the fact and those feelings are gone. I am tired however and tomorrow I get a double dose as not only now have this now daily treatment, I am to receive my first dose of the Carboplatin chemotherapy administerd weekly to augment the radiation so off to sleep I go.

Good Night all.

Wednesday, April 21, 2010

Tests tests and more tests

They just can't leave well enough alone can they? So much for a two week hiatus in between chemo and radiation as not only do we have the normal follow ups and the mask making session, now I get to go spend the afternoon being scanned. Previously I might have been concerned about the amount of radiation this subjects me too as we did some Friday as well but considering what is forthcoming........ what's another scan?

Speaking of the upcoming regiment that is bound to make Jeff glow, I previously referred to the "shop of horrors" and my visit Friday to make my mask. What an experience and process that was and it certainly creates some anxiety for the treatment itself. and if you are claustrophobic there is no way! Hell I may be by the time it's over.

I will admit they certainly try to make the lil shop as comfortable as possible with the soothing music, a mosaic on the ceiling with blue sky and billowing white clouds, all in an attempt to distract you from the issue at hand. Never mind the ginormous machine that sweeps all around you with its lasers, and then there is the mask itself. To make this, you lie down on the machine itslef and go through a bunch of adjustment to align you just so with the lasers. Then they come over with what feels like a nice warm towel, lay it across your chest and literally roll it up over your head. Turns out it is a mesh like substance and they start with what is almost a nice facial massage forming it too the contures of your face. then as it starts to dry and mold, it begins to tighten. That is an odd and somewhat unnerving feeling but it does not last too long before they remove the mold and there is now a perfect mesh likeness of me. Made me think of that Travolta/Cage movie a few years back-Face Off. Now they let it set for 45 minutes before we go up to imaging to take pictures of the inside of my head/neck so they can line everything up for the actual treatment.

Now is when it gets spooky. The mask has now completely hardened and when I again lie down on the table and they place it on me, they literally lock it down on the board so you can not move. It is so tightly formed that you literally cannot even speak as there is no room for your jaw to move. Swallowing is even difficult as that motion is also restricted around the neck and as the actual sessions are only around 10 minutes, all they are really concerned with is that you can breath. I have to admit, I am not claustrophobic however I found myself getting worked up when they leave me alone in the imaging room to plot the scans on the computer. A very helpless feeling and they must have noticed I was getting anxious as after a few minutes of silence the tech started talking to me until they were ready to run you through the machine. Again all quite unnerving and this is just the prep appointment. I can't even imagine when I go back Monday and they have finished this mask. Remember, on this visit, it was mesh-when I go back, the physics guys and the doctors will have plotted the treatment area and filled in all but the areas they wish the beams to traverse..............YIKES!

More on this as I experience it but for now, back to the big Q for the afternoon!

Wednesday, April 14, 2010

Off to the Lil Shop of Horrors

Well Friday is upon us and almost a full week since I unplugged and always an adventure to see what the hangover will bring. This time it seemed the the recovery process a bit slower as harder to purge the poison out and had a more fatigued week but at least we're pau and every day gets stronger and feels better although we have a never ending runny nose that shows no sign of stopping. The senses still running amuck too with my sense of smell being really acute and I am again feeling a complete lack of patience and aggravation on things...sorry if you got any of that but just can't deal with certain things as odd as that sounds-hearing a bit of an issue but not as bad. Hopefully, we wont have any adverse effects with the upcoming carboplatin I will be receiving as they are a bit concerned. A known side effect of the platinum's is it can do permanent damage so monitoring closely.

Now it appears Halloween is upon me early as am preparing to head up to Queens and into the bowels of the basement to the Little Shop of Horrors....RADIATIONVILLE. It has not gone unnoticed on me they have to bury the place underground! Today is what they choose to call a "planning session" where we review the timeline for the upcoming treatment and then make my "mask." I know that is actually a good thing as it will be molded to my face to protect as much area as possible and allegedly only allows beams through to certain areas needing treatment but to be honest, this is starting to unnerve me a bit. I have been very fortunate to have made it through the chemo phase relatively unscathed and can only hope the same holds true for this portion. This truly is the the 800 lb gorilla in the treatment of this type of cancer but the reality of what this is capable of in it's side effects is not making me happy as the brain runs amuck-believe me there have been some great success stories from people who have done this..but just as with the chemo, the horror stories are even more abundant as some of this can be permanent so we just have to pray for the best.

One day at a time and maybe after today I will feel a bit more confident and comfortable....or then again, maybe not

We'll see

Friday, April 9, 2010

And then there were none!

Last bag of 5FU is gone and I flew the coop and am home on a beautiful Saturday afternoon! Was able to expedite the drip to 21 hour cycles and have now officially completed the inpatient cycle of this regimen albeit a bit loopy so going to rest.

Tuesday, April 6, 2010

3-2-1 and let the countdown begin...finally

T minus 100 hours and counting as back at Queens, PICC installed, x-ray confirmed, first bag hung and 3 to go!!!!!!!! The pharmacy screwed me up and finally delivered the meds 3 hours after everyhing else was done so that time wasted and once again can't get started before 3 o'clock but at least we are finally off to the races as this is the last of these extended stays at the hospital. Still a slow process getting everything launched but the nurses and vascular crew know me by now and the little game against the clock we play so now that dripping, hoping to still be out of here and home by sundown Saturday and hopefully another smooth sailing throughout the nasties that come later today.

Thought we'd be off to a great start as beat the clock until the pharmacy glitch but at least no unfortunate doctor issues like the last. Even had a nice reminder call from my new Doctor reminding me about today and to give me the number of his exchange should I need anything during my stay. Still have not submitted my letter as have opted to wait until I'm out of here considering his position here but suffice it to say, the nurses are none too surprised as to my switch.....and pleased.

Thursday, April 1, 2010

New Doc!

Well I had this whole April Foolish caper all thought out for my post today but thought better of it as some of you may not have appreciated the levity-AND I have something real to post anyway. Just left my appointment with the new Doctor. On a first impression, I feel great about him. The man actually showed interest in certain items that were previously glossed over, spent time explaining what he was proposing, why, as well as what to expect. Best of all, he asked and answered my questions in a fashion that actually made me feel like he cared! What a pleasant relief this appointment was! CHEE HOOO!

That said and as expected, we are all set up for admittance for my 3rd and final cycle of my inpatient treatment next week. From there, he will be speaking with the radiologist and confirming the plan for the next cyce of treatments. At this point it looks like a 7 1/2 week radiation program augmented by a once a week Carboplatin chemo treatment (the much less toxic and better tolerated baby brother to that nasty Cisplatin they give me in the hospital). Isn't communication is great!

Oh-LOL!-he simply shruged off the mediport when I asked and told me my choice but at this point-why bother-you apparently do fine with the PICC in the hospital and why go through the procedure for 7 one hour weekly treatments-your veins look great and we have plenty to choose from for such a minimal regiment.

And to think-that is was set it all off with Mr Bill!