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Sunday, February 28, 2010

Home!

Well Round 1 of inpatient compete without much incident-I am exhausted and did get a bout of a few different things today but at least I'm home-Get some sleep in my own bed and evaluate in the morning-I'll add to this then as really quite scattederd here-Good night and thank you all

Saturday, February 27, 2010

Change of focus

Guess I'm in the good place today as if this tsunami does hit-I have generators, a full refrigerator and lots of toilet paper. My friend Jen popped in as a house on the water in Aina Haina not a good place to be right now. I can only assume this does mean escaping today is no longer an option-Hell all the doctors are either, a) evacuating their said beachfront homes or, b) moving the boat out of the harbor-LOL- Back to the news and good luck-hope this is a non event but they are taking it seriously here in Hawaii.

BTW-another night for me that fortunately was uneventful! Thanks

Friday, February 26, 2010

Correction

I do want to make sure that when I, or you reading this, am feeling sorry for someone so obviously in pain it is justified and you assume it is considering what goes on here. In the case of my new neighbor however, I am informed it is not and that would be soemwhat misguided. Although still a sad story I'm sure, it turns out he is a regular dementia patient who just screams at the nurses to get their attention for food-problem I foresee for the night-he sees these nurses, and other people apparently, that he is yelling at in about 30 second intervals weather they truly are there or not-Going to be an iPod night

Hiccups?

Where does it say anything about hiccups? I've read all the marketing materials and no where do they mentioned them. They mention a plethora of other nasty things I fortunately haven't had to deal with yet (something my new neighbor apparently sure has-feel so sorry for him as wont stop moaning-YUK!) and am happy to keep it that way even though I've had to deal with them for some 8 hours now. As bad as they do hurt after that amount of time-I'm glad to report that is all there is to report. Back to the Olympics and one day at a time right!

Thursday, February 25, 2010

The first 24


Uneventful...but I'LL TAKE IT! The first 24 hours have passed since they loaded me up with nothing to report. Big caution flags are being waved that even know I made it through this part, this time, essentially unaffected is great, but starting 48 to 72 hours after is another known speed bump. Gee thanks! As I said in a post somewhere, I just keep trying to look around the corner for that lurking train trying to blindside me. Day by day for know and it looks like with the combination of my reaction to the treatment as well as admissions issues, if I do not want to stay until Monday (I'll pass) they are looking at letting me escape Saturday with a to go bag that has the last 24 hours of 5-FU and a travel pump. Ironic the difference in this stuff and no wonder I have that nice "Biohazard" sign in from of my room. They are willing to let me actually take home 5-FU, yet last night when they were preparing and loading up the other two treatments....the nurse has a friggen hazmat type suit on. HELLO! is there an anthrax warning I missed. "Oh no Mr Davis, this is quite toxic and we can't get it on our skin." Really now? Can I tell you how much that helps me as a patient and builds my confidence SO MUCH as I sit here in these obviously NOT SO similarly protective shorts and short sleeve smock you provided me with for this event-further you do realize this will be being pumped INTO my body-all the while you have the heavy duty going on, super gloves and all-I swear if she were to have put on the hood and mask.........

Anyway as I said-feeling very fortunate thus far and hope it continues but off to get some rest

Good Morning!

And surprisingly it is-It may not be Holland America but it isn't what Ive expected yet and believe me that is a good thing. No reaction at all thus far to the meds-WOW! Also, as noisy as it was around here at 11 pm, I did sleep through the night with only one wake up by the nurse to change out a bag and the pump alarm woke me. Barely noticed the 5:30 nurse taking labs as she didn't need to wake me and just got what she needed from the lines - they like thier patients to sleep on this floor-OK works for me and yes-when I ordered breakfast last night I did it ala ship style with multiple items and a delivery time of 8:45. LOL-it showed up at 8;50 and the order was right. Hope we can keep this up. Have a great day be back after the 24 hour mark

Wednesday, February 24, 2010

I'm full!!

With the exception of a seemingly ever ending drip-I'M FULL and almost certainly glowing. The 5-Fluorouracil (5-FU) is being administered over three 24-hour cycles and why apparently I had to do this inpatient. The other 2 chemos being used are the real nasties and with doses of Docetaxel and Cis-platin completed, thus far, knock on wood-all is good. The nurse tells me I have passed stages in the treatment cycle cleanly where other patients faltered but there are many more hurdles so we're pounding the hydration drip bags and Gatorade and I can only hope to say the same in the morning and we'll just read all about these alleged side effects instead of living them...... but time will tell. Good Night-I think...these places are loud!

A new chapter! Treatment to begin today

Well here we go into the great unknown-heading out to check into Queen's for a few days. Hell I've never even stayed overnight in a hospital much less Mr. Toad's Wild Ride it looks like I may be in for. The good thing is this is to be an abbreviated stay and should be home by Saturday although everything with this has been tentative. I'll try to keep updating but as I said-this is a first for me so not sure what kind of patient services are offered such as Wi-Fi, nor quite frankly, how I'll feel-Let the adventure begin, nerves and all

Talk to you all soon

Tuesday, February 23, 2010

Decisions

Actually not but a tease nonetheless. Call MD Anderson back first thing this morning to find they had me scheduled for next Tuesday-After all this and I'm going to miss that by a week-frustrating but I can tell the difference in my throat in the past week and have serious doubts about another week being possible without serious repercussions. MD Anderson agrees as when they found this out, suggested I do not travel. Now I am awaiting a call back yet again from the nurse to discuss the possibility of still coming up for a consult after this first treatment to stop the growth as their general policy is that once a treatment has been started, they will no see you until it is pau-Hoping for an exception

Monday, February 22, 2010

The clock is ticking!

What an amazing forum this has created and I thank you all for your comments as the information flow and referrals are incredible. Through this blog, friends, friends family and friends of friends have learned and seemed to have gotten on a bandwagon today and called their own contacts at MD Anderson on my behalf....and voila, my file seems to have been expedited as the Head and Neck center called back. It happened to be in the 45 minute window I was away from my phone and closing time in Houston so I have no idea if she is trying to schedule me an appointment for Thursday or next Christmas but you got their attention.

That said however, and I do thank everyone for their efforts as I will use Anderson in one way or another, but as I mentioned, the clock is ticking and the decision might already have been made for me. The body is an amazing thing and if I actually slow down enough to listen to mine, it is telling me, in a not so subtle fashion I might add, that it would like some help here and NOW so barring any immediate availability, the prudent thing for me to do before I have no choice in the matter at all is check in to Queens as scheduled on Wednesday and start fighting this thing.

On the home front, it appears I also have some of you who have taken it upon yourselves to search and refer me here locally as well. Again I can't thank you enough. In this specific instance, I've been referred to a radiologist who did validate what is planned here but is also quite familiar with MD and had some great suggestions for me as to what I can do to better put myself at ease, and possibly consult with them as we go through the process. He also strongly agrees I get some treatment going ASAP, noting that does not mean it can not be altered down the road to something I am more comfortable with. It also didn't hurt to find Lisa is in this camp as well and although she never said anything prior to sway me, she is much more comfortable knowing treatment is on the horizon.

Great words of advise and a phone call in the morning and we'll have this week and at least the beginnings of my treatment options in place and implemented!

Sunday, February 21, 2010

A day on the water for me-had to do it!


Might as well do something for me while I still can and was able to sneak in the HYRA Opening Day Regatta on Prima Donna after all-Thanks Dee and Rick for having me-I needed it. A big week no doubt as have to wake up and start dialing if I can get some real people to talk to-this thing is taking a toll as no way I should be this fatigued and without question, I have to get something going in the next few days-Have a great network of friends working to get me in to see the right people-thank you and what a beautiful day on the ocean!

Thank you Pam and Keith!

Wow - what a surprise and special night-Thank you Pam and Kieth for putting together an eleventh hour potluck BBQ for family and friends-your right, probably will be the last normal Saturday I can eat that kind of food. What a surprise and thank all of you that showed up-I'm honored to have you as friends and thank you for your concern and support-It means the world to me

Friday, February 19, 2010

Houston...come in Houston, we have a problem!

Just left my oncologist appointment and must admit, not real happy and even concerned. First off, I'm annoyed as why why why must Doctors offices always schedule appointments when they know they cant fulfil them. My appointment was set for 3:15, it's 4 before a nurse even acknowledges me and puts me in a room and 4:45 before an appearance by the Doctor. Enough said.

I had been hoping after the non event of the lung biopsy, he would reevaluate his regiment. To the contrary, not only does he brush right over that topic he almost immediately starts stressing that we've waited long enough and we must start the treatment...tomorrow if possible, Monday at the latest. I appreciate the urgency, I tell him, however, not only have I felt better than I have in weeks and can actually eat seemingly anything without pain, I feel it is prudent to get myself a second opinion and am awaiting just that. He winces and agrees that is my purgative and then asks if that is a local or mainland opinion. I know his nurse has mentioned and I have no reason to hide anything from the man and tell him it is MDA. I get the yes they are a great facility......but our program here is pretty good too. He goes on to explain my problem here is with time-during the summer MD was taking a month to see people and he is concerned about the weekend as apparently this thing is growing and on the scans there is serious concern about it closing off my airway. He start looking at my throat and telling me if I ever hear any wheezing that is a sign that the airway is shutting down. Ooppss-wheeezing????Um every night I sound like a bad symphony with the array of noises I create-In most cases I even wake myself up.

This stops him cold and he looks and says this is getting serious and he can stop it and he doesn't want to hear I waited and had t go to ER for an emergency tracheotomy just so I can breath.....

OK you got my attention and i don't think this is an ego tactic to scare me just to keep the business-now what? No word from Houston and I'm rather fond of breathing..... I have work to do this weekend to see if I can make further contact as he has pleaded with me to check I for treatment no later than Wednesday if I do not go to Houston and should anything happen prior-get to ER and call him

Time not my friend here and fear factor registered...time for a sunset cocktail and ponder as looks like regardless, this the last Friday I'll have one of those for a while..Uugghhh!

Thursday, February 18, 2010

Second opinion

The process has begun-finally able to actually speak with someone at MD Anderson today and have faxed them all copies of my Pathology, CT and PET scans-now comes more waiting as a physician will review and get back to me if they determine I need to fly to Houston for further consultation-nothing is easy but at least I'm in the system

LOL

Ok-we have to laugh sometime right. I finally have some time where I can now start opening the pile of medical bills and HMSA statements that seem to arrive daily. What a racket this really is and I just have to laugh. I get my statement for the surgery at Queen's and the first thing I notice is an "Insurance Adjustment." This adjustment as they call it is almost 75% of the total bill. I guess this just validates the Insurance companies rational for raising rates again and again-hell if you didn't have the insurance,think you'd see that discount-WTF. We don't need to address the Anesthesiologist-we all know how fast he was back on the golf course. The one however that really got me-"Recovery Room - $1,000" HELLO-you mean the little volunteer there that kept asking me questions and feeding me ice chips as I came out of it.....a thousand bucks-hell I didn't even get a massage for that-We're all in the wrong business!

Wednesday, February 17, 2010

Finally, Some Good News!

Well today was the biopsy we have been fearing and awaiting on the lung and here I am out early with some good news! Woo Hooo!!! Looks like the diagnosis is as bad as it is going to get as the scare here with the lung is a non event-apparently in taking so long to get this procedure scheduled allowed whatever that spot was on the lung to heal and beat it-It is GONE!

Get dropped off this morning for the procedure, hours early as they always demand. Gave me a chance to catch up on all this Olympic Curling coverage...LOL...Is that a sport or what? Actually in my case today, all that time was a good thing for the nurse who was having severe difficulties in putting in my IV and after numerous failed attempt, we both agree it would be best for her to concede and ask some help-I can only be a pin cushion so long.

They do finally come around to get me close to 1 PM. I am wheeled down to the Imaging department (BTW-the initial thrill of cruising around the halls in a bed has lost it's appeal) where I am met with yet another clipboard and 20 questions. Then the process of setting me up and contorting my body in such a way as to allow both the ability to run through the CT machine as well as allowing the Dr access to my side for surgical access-very awkward. Soon after this exercise is complete, the Doctor appears and goes through his spiel about the ease of the procedure and worst case, they only collapse a lung about 10-15% of the time, and that even with a complication such as this, the need to insert a breathing tube and admit me overnight is even more of a rarity! Such bedside manner! We begin now with the process of obtaining new pictures running in/out of the CT machine. It does not take too long for me to realize something is not right and the Doctor excuses himself from the room-Oh Shit is of course your first thought-now what?

About 20 minutes later the Doctor returns to the room and announces to his team and me that he will not be doing a biopsy as whatever was showing up on the previous scan is gone and there is nothing to see to go get! Ahh relief overcomes me as I am thinking how the delay in this case proved so valuable-too bad we cant rescan the rest with the same result:)

Oh well, this really is good news these days. Even the consensus was that of a non event, the realization that WHAT IF they are wrong and how much worse this case would be is not easily ignored-

Now back to the immediate problem at hand in how to treat the actual bad guys. Hopefully my appointment Friday will yield a less aggressive stance with this issue behind us, but I am still awaiting that consultation call from MD Anderson due anytime.

For the rest of the afternoon however, I'll take this victory and shake off the nerves and fears that speculation can cause

Tuesday, February 16, 2010

Overwhelming

WOW!-Not sure what to say but thank you-can't believe the support and comments I woke up too in response to my sending this out yesterday-Thank you everyone

Monday, February 15, 2010

The Alternate Opinion

Following a great sunset at the club with a beer and some dear friends, I run into a family of other dear friends and although we no longer hang on a regular basis, friends they are. Recently, there was a terrible loss in their family and we all lost a respected great man, athlete, father and another you would never think would be a C patient yet here we are. I have so many questions as now its personal for me, yet I know what a rarity for them and to me it is wrong in so many ways to interrupt this dinner.....Contrary to my though, my favorite attorney fires right up and asks some pointed questions. We now all realize my prior visit was not of a drunk with my voice screwed up but of a problem that needs to be fixed......The unanimous response to me is get treatment NOW and ironically in their specific opinion, Queens did great and once we moved to MD Anderson is when the demise began-again a different yet very real point of view

President's Day

Not to state the obvious but it is wayyyy to nice a Hawaiian day to not get outside. Got some work done, have no doctors to deal with as they took the day off too and regardless of where and what my treatment may be-my beloved ocean time will soon be limited-got to go take advantage of it while I can!

OH! and they finally have confirmed that biopsy for Wednesday morning-I'm out!

Friday, February 12, 2010

Frightening Friday

So today is the day I hope it all comes together as I go in to meet with the oncology nurse for her consultation. After I rehash the weeks developments that have led to me NOT having a biopsy done yet, they contact the Pali Momi nurse as well as the lab. It now appears the lab can not schedule until they have the images and they do not have......although they are told they were sent........again a clusterfuck so when they ask if I would be willing to go to Restaurant Row and pick up myself, I agree so long as they make 2 copies and I can have a copy of this pathology report right here-I want this information in my possession now or I can see it will never get to Houston.

I then go in for my consultation and learn what has to have been the biggest shock to date outside of the initial notification I had the problem. Further, I again find myself in complete disbelief that this is a regiment that has been determined without the benefit of the biopsy.

This nurse proceeds to inform me that they propose to administer such a severe dosage of chemotherapy drugs that I will need to actually be admitted to Queen's for a period of 6 days for this treatment. I will then be released to go home for 14 days and this process will be repeated 3 times.


THREE TIMES!

I have never heard of anyone being admitted for their treatments no matter how bad and they want to take me down on 3 separate occasions for 6 days straight each time-OMG

Yes, you become ill, yes you will have severe body and joint pain, yes you will loose your hair.....basically we are going to do everything everyone fears about this treatment but we'll keep you hospitalized to keep an eye on you. WTF!

Once this is complete, you will get a 2 week break and then turn you over to radiology and the House of Horrors for the regiment they previously discussed with you, Oh and yes, we too will have determined by that time what chemo treatment we will continue to run concurrently.

I again find myself wondering how this treatment can be construed as "with great success and easily treatable."

I can't get out of there fast enough in the hopes someone at MD Anderson has gotten back to me........PLEASE!

Thursday, February 11, 2010

Pearly Whites

Back to get the ole teeth cleaned and polished as well as have some fluoride molds made for my post treatment health......Expressing my frustration and concerns to the dentist as to the entire "team" and the communication, or lack there of.....and he jumps in and says now wait a minute, they most certainly are discussing your case-I was actually involved as they did it in front of the entire ENT staff just last night. It was quite a discussion with numerous suggestions and references to medical standards.....We do that as a department once a week and you took center stage last night so I hope you'll find your next meeting with them much more comforting,

Amazing what you learn from a dental resident-LOL- We'll see.

Tuesday, February 9, 2010

Communication frustration

OK-English is my first language so imagine my surprise when as I just took a call from Queen's imaging department pre-registering me for my procedure scheduled for next Tuesday. Wow longer than I had hoped but at least we can get this biopsy out of the way. Biopsy? No sir, we are pre-registering you for your mediport insertion. No your not thank you , and I call the Nurse in Pali Momi whom was to get with me Friday.....She proceeds to explain that they will not schedule the biopsy until at least a week after my last aspirin use so that will be tomorrow? What are you talking about? I haven't taken nor discussed taking aspirin with you however, we most certainly DID discuss with the doctor that there would be no need for the port until after the biopsy procedure!

Wow!

Monday, February 8, 2010

Good News!

It honestly has been over 15 years. or more, since I've seen a dentist....if it wasn't for the underlying problem I had to go for in the first place.....I might have been scared to death as to what they might find. But what did they find-PERFECT TEETH! No cavities, gum disease plaque buildup.......Even I must say, pretty incredible and lucky.

BAD NEWS-that type of streak will be coming to an abrupt end. The reason they demand a recent check up and prefer an in house Dentist such as I met with is if there is any work to be done or possible extractions within the next 5 years they can see-do it now. The radiation is known to have long term critical effects on your teeth and jaw so it is also a consultation to be forewarned. It goes back to the saliva gland damage and radiation damage to the area that has an effect on healing ability in the area that creates havoc on the mouth-Time to track down Greg Uyeda and get some input

It just keeps getting better and better doesn't it

Saturday, February 6, 2010

Chili Time!



I need a break-hell deserve it even-No Doctors, just a weekend of fun making my annual Super Bowl Chili with friends and a whole lot of JD-Then Super Sunday


Back to reality Monday


Friday, February 5, 2010

Introducing MD Anderson

Fridays are my usual sailing night and we are coming into whatever part of the racing season I might be able to salvage and I hate to miss the opportunity, however, I am so frustrated at the week and am dead tired but need to get some real work done, do a Costco run for my chili before I can just relax. I shoot my friend and boat owner Dee an e-mail that I'll probably not make the festivities tonight. She comes back and asks what the final results were and I tell her. She then goes on about her old boss who had a very similar diagnosis and went to MD Anderson in Houston with fabulous results. She loops me into an e-mail chain with him and he invited me to contact him at any time and refers me to his blog. Not 30 minutes later the name is again mentioned in a conversation with another friend. This evening, my mother tells me she was at her Doctors office today and tells him of my problem. He literally gets on his knees and prays for her to get me out of here-don't let anyone in Hawaii touch him, get him to Houston to MD Anderson and if his doctor won't write a letter of recommendation...he will. Finally over cocktails at the club, the name is circulated and mentioned in the high regard. Never heard of the place before lunch and now numerous accolades in a matter of hours....Guess some research on MD Anderson is in order this weekend

Thursday, February 4, 2010

On to Oncology

At least I understand this part to some degree-between my time with Victoria years ago in L.A. taking her through it at Cedar Sinai as well as the remarkable run my Mom had with her bout a few years back. The fact the "Team" referral coincidentally happens to be Mom's Oncologist also gives me some comfort about this meeting even though I'm still hoping I don't even really need the treatment. Again, the paperwork for first time registration and this time, the in house vampires grab some blood and the Doctor introduction. We go through some pleasantries, a quick discussion on Mom and then right to the point-"You have a problem here..... and it's not good."

We'll there's an intro to make your heat skip a beat. Um, I'm aware of that but why so grim, are there more surprises I'm unaware of? We discuss and review and then get to the "shadow' on the lung where he states-this could change everything and make a bad situation worse. Again-no subtleties here and for the first time I find the courage to ask the question Ive avoided-are talking life threatening or terminal? Talk about the longest quietest seconds awaiting a reply to a question like that.

Thank God the answer is "Oh no no-we can beat this but it certainly changes length of life as well as how we go about the treatment. " I actually take that with a sigh of relief.

Now we just need the results of the biopsy did they tell you when that would be? Did who-here we go on the communication and I can see it in his eye. You have not had a biopsy on this yet have you? "Nope!" and again, a Doc up's and leaves me to make a call. I'm really getting frustrated as this alleged "Team" is nothing of the sort.

He comes back and tells me we'll take care of it from here but it is imperative that even though it is assumed by all to not be an issue, he needs the facts and in that I completely agree. He then goes on to tell me that he will base his regiment off that outcome and will then also determine if radiation will be used at all. Really? I find this quite interesting and ask if his colleague I met with yesterday is aware of this opinion as upon leaving that meeting, he gave a similar impression however the outcome would determine the amount of Chemo administered, not amount radiation. He tells me he'll have talk with him. but again I find myself not comfortable and have the feeling of being in a used car lot with a Chevy expert and a Ford expert both pushing their product on me as the best.

We wrap the meeting with him taking me to his nurse so she can make the biopsy appointment. a follow up with his clinical nurse for a consultation of what to expect and how they do things as well my mediport installation......... STOP!!

Here we go again just like yesterday-my what?

All these guys who want to install items in my body yet we don't know what the treatment plan will be-I just don't get it. He agrees and says he'll work with me and first things first is the biopsy although now its after 5 and that department closed so the nurse will follow up and confirm tomorrow.

I leave with the feeling that this is a complete clusterfuck!

Wednesday, February 3, 2010

House of Horrors

Go to Queen's for my appointment with the radiology group. I have no idea where to go so I ask the volunteer directions and as I approach the wing, I see the sign that says Queens Cancer Center and immediately am taken over by a whole new host of emotions that I'm in a whole different league. Remember, or maybe I never mentioned-I hate doctors, doctors offices and certainly Hospitals and visit as rarely as possible. I have spent more time here in the last week (god it's only been a week) than I have in the last 5+ years combined at that is obviously going to get worse.

Anyway, I find my room, nicely appointed I'll admit I check in and am given the usual clipboard and paperwork to describe your life down to the color of your last pee-(aren't we computerized and as all this at Queens, you'd think they have a master database??? Apparently not) take a seat in front of the nice plasma TV showing the Diners Dives and Drive-In dude and start to fill out the forms. They bring me a glass of ice water with lemon-introduce me to the the other two people in the TV section wearing robes and discussing their own treatments-everyone quite friendly and seems to know one another. The nurse comes by and gets my paperwork-asks a few more questions and then oddly enough-brings me an Ensure and asks me to try it and see if I like it-ODD. She then tells me to go ahead and forget any diets or healthy eating practices for now and just grind! You'll want to keep your wight on as long as possible......

Now the truth coes out as all this is a facade! I am taken behind the swinging doors for the meeting with the Doctor. He comes in, looks at the charts does his own little physical and visual and then sits down to explain what is going to happen. They are moving so damn fast.

"First off, we need to make a mask"

A mask? Excuse me I'm completely unfamiliar with anything here can we get some detail. He apologizes and pulls out a book showing how they make an individually fitted mask for each person that resembles something out of Steven King. Purpose is so he can draw on it to better direct the treatments.....

Treatments-there's an idea and a good starting place, can you explain what you envision that to be in my case? Nope we'll get to that-back to the mask as we're on a schedul and need to make it NOW so we can see about possibly getting me down later in the afternoon for my PEG tube insertion......

WAIT A MINUTE......... MY WHAT INSERTION!

Please slow down as I have no idea on the over all plan of the "Team." fro me and am hear to learn of your portion and certainly have no idea what these items are your talking about-Apparently that Type A personality of mine (please) is causing problems again and he excuses himself to go off to make a phone call. He comes back apologizes and says he understood that Dr Adachi had done this already so we'll have to reschedule a time for the mask and the PEG tube insertion and just not start treatment until next week. I'm am freaking out as to how fast and with no communication they are willing to do things of such consequence and really I am not comfortable.

My comfort continues to deteriorate as we now get into what this treatment will truly entail. Bottom line is he has designed a program that will entail 5 daily sessions of approximately 10 minutes for a 6-8 week period. What this does I now understand will specifically radiate the neck area and attack the tonsil problem as well as the left lymph. STOP AGAIN. What left lymph. This one-and he shows me the scan Dr. Adachi did not have yesterday that shows an inflamed lymph node--not necessarily malignant, but not normal so he wants to attack the entire area to prevent spreading.

I am stunned and disappointed to hear the that I now have a lymph effected but I understand and he reminds me that a tonsil is essentially a lymph node anyway, but now of bi lateral concern. What I do not understand and question is the need to blast my entire neck and jaw-I understand technology in this field is such that you have the ability to radiate each individual node as needed and still be successful-why take them all on? He simply replies that is the best way he knows to get anything we don't see. Too much of a shotgun approach and its my neck so he does indicate this could change once they know what that shadow in the lung is about as the could be "bad" so for now he is ignoring it altogether and when I talk to the oncologist tomorrow he'll explain how it might alter the treatment. Again, not really comfortable with any of this at this point

Moving on, he then goes on to the side effects of his treatments and says I can expect minimal or no side effects for the first week or so. From there, patients begin to experience an extreme sore throat and possible blistering of the mouth-hence the Ensure tasting and the suggestion of the PEG tube as some people literally are not able to eat and drink. He further explains the strong possibility of the "complete and total destruction" of salivary glands and taste buds-causing extreme dry mouth and further effecting the ability to eat. In most cases, your taste buds will return over time post treatment, however, the same can not be said for your salivary glands -FOR LIFE!

At this point I am trying to take this in and I sure as hell don't understand how this treatment can be construed as "with great success and easily treatable."

This leads us to a conversation of any history of dental problems and my last check up. Oops-Ive been really bad on that and when I tell him probably 10 years (more like 15 if I think about it) he orders a complete dental work up and cleaning before he can do anything further.

Hey-I'm due and it gives me some time to digest this little shop of horrors and the nurse gets me set up for with the Dental department on Monday.

Tuesday, February 2, 2010

Post op follow up-IT'S OFFICIAL

Biopsied 4 places and 2 came home benign!

With the other 2 however, I was not solucky and it is official, I have developed what is called a squamous cell carcinoma of the right tonsil (the nasty lump in my throat that I went in to begin with) and the left nasal pharynx.

OMG-even know I knew coming in-to get this kind of news is indescribable-WHAM! -someone hits you square between the eyes and the wind is knocked out of you. WTF happens now and the questions are simply overwhelming but the bottom line, this is the real deal and almost immediately, other issues in your life fade to the background. What happens now?

Very nonchalantly and direct as many Doctors are, she goes on to tell me that although she does not have the film back from yesterdays scans, there is another potential problem mentioned in the report regarding a shadow that appears in my lung. Doesn't feel it is an issue as she was down there on Friday and didn't see anything and even the reporting Doctor mentions it could simply be an infection of some sort, but needs to be verified either way and we should know in the next few days. In the mean time she details everything best she can at this time and tells me that although things could be better (YA THINK!) this is very treatable and her patients have had tremendous success with her Team and treatment programs, but we must move fast justifying her making the appointments for me. Obviously her staff mentioned my comments and she does not appear to like her decisions challenged as we had a few tenuous moments on how she did things, especially with "Tyape A personalities" such as myself....period-Excuse me? At this juncture, a point that I file in my head for later thought as that part didn't settle too well with me considering the other news I have just received-the same news that breaks me to tears as I collapse into my truck

Monday, February 1, 2010

Tests...Tests.....and more Tests

7:30 am

Ring ring.....

"Good Mornong Mr. Davis-this is Dr Adachi's office calling to let you know you have a 2:30 PET and CT scan today at........Also a reminder of your follow up here tomorrow at 2:20. We also scheduled you into radiology on Wednesday at 1 and an oncology appointment 3:30 Thursday out at Poli Momi. Each of those offices will inform you at those times of any additional appointments needed at this time........"

Um hello! This may come as a surprise but I'm very capable and quite accustomed to making my own appointments as I do have other things such as work that I need to schedule around.

Apparently not anymore!