Tuesday, June 29, 2010

5 Months

Here we are at the end of June and I reflect back to those first days of February. Wow-5 months of my life GONE and we have fought hard yet still wondering what the hell happened and where its going. I'm also here at T +12 days since the madness of the treatments has stopped and although the misery still lingers, I certainly hope this chapter has closed and we have been successful in eradicating this disease from my system. Of course I have to squeeze out the next 75 days or so as won't have confirmation of that until September so for now I must appreciate and be happy with the progress I am making and continue to do such although nowhere near recovered.

Day by day I seem to be seeing a little more hair returning, a little more energy for longer periods of time, maybe a hint of flavor in the ever increasing types of food I can actually attempt, although still very liquefied and soft-no BBQ action yet. I say that as I might have gotten a little overzealous over the weekend. Lisa back from her trip to Cleveland and was really missing her Friday sunset cocktail with Mom and the rest of the OCC Friday night atmosphere and although NO I'm certainly not there yet on the coctails we did it and had a blast, followed by Uncle Bo's for her favorite clams. I tried but not for me yet but was able to get down some pretty hearty soup. Saturday had a real breakfast inclusive of some over easy eggs and even some oatmeal cakes and full day at the beach at teh Club with some friends into the evening followed by a Sunday brunch with some corned beef hash.


Way too much and overloaded the system. Monday was miserable as the body has a way of telling you this and I was not treated nicely. Lets just leave it as I had a lot of time in the restroom and was not pleasant so have throttled back a bit and added back a lot of liquid based items again. That said however, the fact I am able to get more and more down every day is good and I am starting to notice certain tastes around the edges. Still very fatigued and good for a few hours at a pop but I would expect that to improve as well and as the eating improves, so follows the energy. Again, day to day as the adventure continues and my next goal-Macfarlane weekend coming up here for the 4th!

Wednesday, June 23, 2010

Oh Boy-Slooooowww going on the recov!

Here I am at T + 5 days since we concluded treatment and wow-I feel worse. The pain in the throat when I swallow or attempt to speak has grown in intensity-very acute but increasing nonetheless as I am actually increasing my pain meds but to no avail. Man would it be frightening if I didn't have any of those that is for sure. Of course, I was told this would happen and that I can continue to expect it for a while as the radiation actually compounds on itself after treatment but who believes until it actually happens right? My daily nap regiment hasn't subsided at all either. A blessing I guess but sleep is something the body is craving during this. Of course the meds assist there too. Finally is the eating issue still jsut that, an issue. Although I somehow seem to be ingesting more and a variety when I actually am able to swallow, however I continue to be amazed at this 185 lb number that I see on a scale-hell I haven't seen that number since my Punahou VB days. Of course this is not a good thing for me now, but it does explain why I'm very weak and lightheaded these days-need to change that and get some strength and weight back-in moderation of course but boy I can't wait to be able to enjoy food, beverage and good company again! Missed two back to back birthday weekend events, an out of town family friend get together and now Lisa back home needing a vacation from her family vacation but day by day, this is still quite an adventure.

Friday, June 18, 2010

And then there were NONE!

Treatment is officially completed. Chee Hooo-we actually did it and this part of the nightmare is OVER!!!!! Thank God-My last zap session is in the books and they even gave me my mask as a parting gift! LOL-maybe a Halloween costume but for now we can try and recoup as soon as possible and get back to some semblance of reality. Need the throat to heal so I can eat as atually being down in the 180's is not actually good seeing as haven't been there since high school. Day by day!

Sunday, June 13, 2010

5-4-3-2-1 The coutndown continues!

FIVE more treatments and we are PAU. Can't wait for next weekend and let the healing begin as Friday will now be the end of my treatment barring any additional hurdles. Thank God.

Speaking of hurdles, I have been remiss in keeping this updated and notice I haven't lived up to my promise to fill in the blanks from the impromptu Queens visit so lets highlight.

I left you last with the first day fiasco and platelet infusion. What a night that became. I took the unit just fine. It was similar to the Cisplatin infusion as a nurse must stay with you throughout to make sure there are no complications and immediate rejection. I had none and the rest of the evening went fine. Somewhere in the early morning however, there apparently was an incident and I caused quite the stir on the floor. I say apparently as personally, I have zero recollection but it was quite the scene with the whole team involved. When I wake up in the morning, I notice my throat hurts exponentially more than when I went to sleep and there are a bunch of medical personel overly interested in ME!? OK-What happened you asked (Me too) They have these new beds at Queens that register your temperature, heart rate and a few other vitals i believe just by laying on them. Mine registered a rapid increase in heart rate up into the triple digits so the nurse came in the check on me. I have also been told I have a form of sleep apnea to begin with so this must have been a time I was taking one of those alleged breaks from normal breathing patterns and she sounded the alarm. In her mind, I am choking on my own phlegm and I may very well have been so they were trying to wake me up to have me cough and clear my throat and I guess I didn't want too. She tells me I did finally wake up and they were forcing me to cough, hack whatever to clear and it wouldn't so in come some suction tools and the like-hence my tortured throat as it was raw to begin with. This went on for 15 minutes give or take until they were satisfied I was no longer going to choke but the odd thing.......I have no recollection whatsoever. They figure it was a cross/overreaction to a sleep apnea, a reaction to the infusion and morphine but apparently scared the heck out of them. With the exception of the throat pain, probably a good thing I have no memory.

Rest of the day uneventful, watched the horse race and slept a lot as very blah about everything and that is how the rest of the weekend went. Monday morning and I am awakened by my Radiologist asking if I am ready to continue with my treatments today WTF! NO! He takes the answer and says he'll call me tomorrow. HELLO-last thing in the world I want is to go get zapped. My burns on my shoulder are the only thing showing improvement with this silver ointment they are using but everything else is no better (Although all my counts are improving) The concern however is I am still not eating or drinking near enough as the throat is still so damaged.

More of the same Tuesday with the counts continuing to improve and the Doc and I discuss my interrupted zapping sessions. the radiologist got with him the day before and talked it over with him and he to asks how I feel about it as there is concern I have been on too long a break. My counts are such he feels it is okay. We then talk on getting me some infused options for subsidence as I am NOT going home today. Great idea as I know I'm loosing weight and the infused hydration is great but need food. Unfortunately, I never hear from him again that day. I do get a call from the head zapper again pleading with me to get back on schedule. He got me with the fact he was not going to have me "make up" the lost days and i can just continue with my existing schedule. I confirm with him that means one more mega treatments and then the 7 directed tapering down and agree to get it done. That in its own right presents my biggest problem of Hospital "procedure" as well as the fact on this side, the nurse set up is much different than my prior experiences as you never see the same one twice. That means retraining every day and that gets humbug! Although I am no where near the mobile unit I was during chemo and have barely left my room, I have to draw the line on being transported to the dungeon in a gurney. NO WAY I am perfectly capable of walking thank you. They will have nothing to do with it, it is procedure. I'm only riding the elevator down 7 floors and walking around the corner but we negotiate to a wheel chair. At least I can say my FINAL heavy dosage of radiation is now in the books!

Wednesday I awaken to the Doc on his rounds and I bring up the food factor again. I have been told of this big white bag of goodies that is wonderful. He is aware of it but hardly uses as his goal is to get me to a point where i am self sufficient. Hey, I'm right with you and understand however, I'm not so lets get this feed bag hooked up so long as your not letting me leave. He laughs and says he'll talk to the pharmacy. He comes back a few minutes later and says the order is in. Zapping time approaching and sure enough, here comes transport with the damn gurney again! NOT! I already have today's nurse willing to walk me down as he never seen the dungeon and he is curios so let him deal with the "policy" but all works out. When I get back, I ask him about my "dinner" and he tells me its ordered and it is such a specialty item, they only make once a day and hook up at 6 pm. Like clockwork in comes this 2 or 3 gallon of milk is the best way I can explain it-Dinner is served-wish we had done this for the last few days as I'm down into the low 190's and that is light for me.

Finally comes Thursday and Friday is King Kam day so my counts are such and I am getting these nutrients from the feed bag that we determine it is release day! Finish the bag and go home-Yee Haw. I knock off one more zapping session and with the Holiday leaves next week for the final countdown of 5 and at 6 o'clock, I am disconnected after a week and discharged.

Quite an eventful yet a complete waste of a week as well but I'm out!

Wednesday, June 9, 2010

Still at the Spa

Just a quick update-lethargic as hell with 2 friggen IV's sprouting off my forearm so no wonder. Been a week of up/downs yet I still find myself training new nurses here at the Queen's Hotel & Spa. Will write up the adventures and post soon, just not up to it right so an FYI as to my status have to suffice here on Wednesday night.

Friday, June 4, 2010

Setbacks! Safe to say that damn train finally found me!

And boy did he ever lay me out. Granted I've made it all the way to what is essentially the last week of treatments in this entire ordeal with limited overall damage but when he got me........he making me pay the price. This not the first time I've eluded to things turning on me over the past few weeks however as I sit here in my room at Queen's, I seem to have the time to catch up with some more detail on this blog.

That is right, I said Queens as I have been readmitted, although hopefully only for a brief visit. The first 24 hours back in and maybe, just maybe they've figured it out and things will settle down and can go home over the least that what I'm hoping for. Lisa and the boys take off for Cleveland on Tuesday and I certainly don't want to be holed up here and not see them before this 18 day stretch begins so some added enticement for me to escape as soon as I can!!!!

As you know, I've been commenting about how this radiation has been kicking my butt....but almost over. Yesterday was to be treatment 28 of the 35 total, however, 28 was the end of the major regiment he had scheduled to administer, to be followed with a reduced regiment and taper it down to the finish line next week however, I left the house yesterday already making my own decision to talk to both the Radiologist and Oncologist teams about completing this one last treatment and calling it quits. If that was to be the case, we would probably not do yesterdays chemo regiment as only something we were doing to concurrently with the zapping sessions so don't see the need.

WRONG! The whole process and decision had been made on my behalf and I would find that out before I even saw my ontological nurse friend.

To review, the previous Thursday, Dr Cho cancelled that weeks chemo due to my platelet counts dropping below 80 (to 44 to be exact,) and that puts you in the danger zone of being septic. Instantaneously upon seeing the numbers pop while still with the vampires, I see the number has dropped alarmingly further and Carboplatin is a no go and for some reason, I am concerned with these new numbers that they may be making me a reservation next door. It took less than 3 minutes into the appointment to learn that is what was happening as I also found I had a fever confirming I have obviously developed or am in the process of developing some major blood type infections. What I didn't realize is this meant NOW! Don't pass GO! Don't collect $200! get your ass in that wheel chair as we'll call admissions and get you a bed. I overhear it is going to be a few hours so they want to hook me up to an IV and start flowing in some meds and fluids here in the office until the Hospital is ready to take me. I of course have other ideas of what to do with this time and figure I might as well head home to get my truck out of the garage so as to not tack on god knows how much in overnight fees, pack an overnight bag and pick up my computer and iPod-(no laugh-necessities in this place!) Liability issues in play now I'm sure as no one likes that idea one bit-so you know me-I finally had to pull that "non-compliant behavior" card and tell the NP I'd be back in an hour. She was seriously concerned and pleading she couldn't let me do that so I wink and say-alright-I'll just go to the restroom, should be back over at admissions in an hour (wink-wink). Must be serious as in 61 minutes my phone rang with her asking where I was-Wow really? No worries, on the freeway heading in as a passenger!

She's done a lot to me and that put her at ease. It was jsut then I realized she was on speaker so she may have just had her own interrogation of sorts-I hope not as she has been great.

In any case, shortly after 1 pm I find myself walking into the now oh so familiar unit on the 7th floor of the Queen's Hotel and Spa! Im greeted by some of the staff that actually still recognizes me (don't laugh, harder that you'd think with the lack of hair and now what has become over a 30# swing in weight top to bottom as I'm sliding in just shy of 200 this week). With talking still extremely difficult and painful, I try bypass some of this and get pointed to my new room. "But you're not scheduled in here Jeff" says one of my old nurses. Confused but tell her I am and Dr Cho's office called it in late this morning and she pecks on some more keys, looks up and I immediately see she is not happy. I hear her say aloud I am checked into Diamond Head tower this time.....and that generates a few similar looks from other staff-they obviously don't like this as it turns out hat is the supped up, acute care unite side of the ward. i.e. special projects and problems. Uugghh guess this is bad and it involves ME!

Ironically, during all this my dear Sluthy Lucy is on the ball an doing her Google/WebMD due diligence for me and sends me and an urgent text with her results appears. Bottom line is no-this is not good and could develop into some very serious problems so she is ecstatic Im checking in and heading to my new room. To be honest.....SO AM I as I am right at my limit at home and should something really bad develop, I have very little wiggle room.

Being a newbie in the new section, all my previous experience in the other side doesn't count and I'm stuck in the must do's/don'ts of hospital administration and have no option but to go through the inpatient and floor procedures as if I'd never been there before. Truth is, I hadn't I was on the next block and could have been Romania as far as they knew-LOL Once we are completed here, inclusive of meeting the Doctor on call, and no-not Mr Bill, we checked that this morning, we can now put in a prescription order, get my IV installed and get some other tests done. By the time this is all complete and I am actually able to finally try relax ....the efficiency.

Bottom line, I am now hooked up to a few different antibiotics, some hydration bags with potassium and electrolytes (I know I need these bad boys) and they are preparing my very own morphine drip-complete with and self administered button to be used as needed! Too funny as it arrives in its own security lock box and a preprogrammed password protected keypad to prevent any "excess" dosage. Oh yeah-if that doesn't help!

This morning begins with the vampires sticking sharp friggen needles in my arm all the while smiling and saying "Good Morning" Sadists! the entire bunch of them and by 7 am we looking at what problems have developed in the overnight and how to address them.

First off my day nurse for the day seems fabulous-very nice bedside manner and seems to know her stuff. She suggest a meeting with pain management team to put me on a program that really works for me and I'll be able to leave with so she sets out to find the Dr on duty and set me up with the "pain team." We also agree on this silver based ointment that she'd like to administer to these burns on my neck as they are so bad. Third time of heard that medicine mentioned so all for it. She gets all that in order throughout the morning and comes back to apply this magic silver potion. So far so good-now can we get it in a liquid gel so I can administer INSIDE as my throat looks like the outside, inside. Proved that one last night as in a hospital, they like you to keep everything and I mean everything, even those bound for the toilet. WARNING: Graphic nature here.........I knew last night in clearing my throat, not only did it hurt like never before but I felt something come loose and come up with the phlegm. Turns out, just like the outside, my skin is literally sloughing off inside as well and what I felt was in fact strips of skin that were literally being torn from my throat- I mean OUCH! That sht hurts so pain team please!!! Where might they be.

Further, and now with the condition of my throat deteriorating we also need to address my count situation - most seem to be reacting properly except these damn platelet's-fallen again to a mere 17 and that is a problem as I am now a serious risk of bleeding out. If I so much as bite my tongue, or cough up my throat as the case may be. We spend the next few hours doing more blood work to determine what mine is as well as allergy checks........and I hear the word "transfusion"


Someone better explain as I have read countless issues in the past few years on transfusions gone bad. Slightly different in this case she tells me as only looking at platelet additions, not whole blood and much less risk of complications as they come from single donors instead of a pool of donors as full blood would be. This is another discussion in its own right but needless to say, we took on a unit of the bright yellow clotting agent and hope what few of my own I have left bond with them overnight.

All in all a very busy 24 hours and praying for progress tomorrow-unlike my last visits here where I was the one on the prowl and in constant motion, I'm much more subdued this trip until we can get a handle on this and I can get to rebuilding the body! That said...Good Night

Tuesday, June 1, 2010

The Final Countdown!

I HOPE! But that what is in the forefront of my mind as I prepare to head in to the zappers for T-10 treatments-YeeHaaa. That said however, it's getting to be quite the challenge I must admit and I cant let myself get too excited as there is a substantial wind down recovery period I can not forget. Take this past 3-day Memorial Day weekend as a prime example. I got three days reprieve and honesty, I am more beat up right now than I was when I walked out of treatment Friday-This is nasty, sneaky stuff. Remember, you see and feel nothing while being administered but boy does it cause havoc. The pain I am still going through in/on and aroud my neck is indescribable AND, I'm on some heavy duty meds as well. So much so they have been reeking havoc on some of my other body functions that create their own set of problems. Suffice ti to say, I was able to finally address tat problem in the wee hours of Sunday morning-quite a relief after close to two weeks to know everything still working, however slowly and painfully.

Anyway enough of that and I know I'm rambling here but really not too capable of sharing much else-the neck lei, the burns around my neck, have become bleeding blisters and you can imagine the type of sunburn you need for that to happen-Lidocaine, Aloe, avail, just try not to move too mush or quickly. Now take that burn level....ditto on the inside of the throat. I have developed one taste that I am aware of unfortunatly and is of a nasty burnt flavor. Figured out as I had to cough some over the weekend it is not only painful as hell, but I came up with some dark (ie bloody) phlem-Ahaa-hence the new taste-it is a burring flavor-that of my own throat

WONDERFUL-10 more Jeff-just 10 more!!!!!! We'll worry about the recoup period then but lets just get there please!

Off to the zappers and then home-needing that nap today big time!