Monday, March 29, 2010

Busy week

We are coming off a great weekend as was able to do an impromptu "staycation" in Waikiki for a friends birthday. Surprised everyone there, including me, as to how good I was feeling and had a great night. We made a weekend of it and broke in the new "Edge" pool at the Sheraton-a well needed nice surprise. Thank you Lisa-thank you Greg and Happy Birtday Kevin!

Now a full week ahead of me that I can only hope will be as productive and we've kicked the hangover of round 2 before I go in for the 3rd and final extended Queens stay next week. Prior to that though, due to the issues I had with the previous oncologist, I have 4 appointments with assorted Doctors this week to get a handle on what the real game plan is for Stage 2 as it is nearing on the horizon. I'm feeling pretty good that after all the trouble with the last guy, that the new one we are bringing in will be much more communicable with the team and that going to be a plus. This week will tell. The disadvantage to this is I was actually hoping to fly up to Houston this week and get their take on my progress and thoughts going forward. Now have to table that for a few weeks as simply no time. The good thing however, is whomever I do ultimatly speak with on other opinions will know what the game plan here will be and can compare notes so to speak.

Speaking of the now infamous Mr. Bill, I guess I took a few days off from updating so never gave you the latest and the "final straw." The short version is he apparently saw fit to once again get a jab in and attempt to further make my treatment difficult.

I go for one of last weeks appointments and meet with my oncological nurse. She just flat asks with a smirk what is my version of what the hell happened in there? Mind you we get along great and she is fuly aware of the challenges and scheduleing issues the office is capable of. She is as disgusted as we are although for the obvious political reasons of wanting to keep her job, keeps her opinions to a minimum, although makes it quite clear she not suprised as has seen it before and is in my corner. She continues by flipping through a file that has some kind a patient discharge and transfer paperwork in it and she confirms where I live and that he knows and then just rolls her eyes and says sarcastically "what is he doing, this certainly isn't going to work." Turns out that as expected, he has chosen to pass me off to anther oncologist within their "group" allegedly for the purposes of having all my files although I still think it is to keep the revenue stream flowing. I of course never had any intention of takng his referral advise regardless simply out of principle, but to find the true insult here is that with no less than a dozen Doctors in this office, he opts to boot me to one that doesn't even see patients at the Queens facility, but ONLY at the Pali Momi satellite office. For those on the mainland, the Queens facility is the primary medical facility in Honolulu, where all my other physicians are I might add, and relatively convenient to my home and office, yet he feels compelled to send me to facility in a completely different part of the island that is definitely NOT convenient.
We talk further and she leaves to go see about getting me set up with the Doctor my primary and I have already chosen right here in the building. Somehow, this file seems to have been left behind (wink wink) so I am now privy to his version of the encounters and reasoning for "transferring" my case. What an eye opener that reading was as it so so riddled false and misleading statements to support his "non compliant behavior" statement of me that it might just border on legal slander as he has apparently circulated the memo.

He has left me no choice at this point, but in order to essentially protect myself, my own formal letter will be forthcoming.

Tuesday, March 23, 2010

Not my best

Whew-not my best folks-not by a long shot. Nothing new to report exactly, just the wicked hangover acting up. Woke up feeling as bad as I think I have since we started this merry go round and it never really got better. Just one of those days, very out of body actually as felt a bit delirious much of it and grouchy.......yes the lack of patience was in full swing still and was enhanced by some really elevated senses. Everything was annoying my ears and balance, things were seemingly extremely loud. I also noticed an enhanced sense of smell that almost did me in as well. As I did venture out briefly to go by my office, Pam saw some of this in full force and can attest to my less than stellar attitude. I thought she was speaking to loudly and just wanted quiet for the few moments I was there but apparently she was not. Sorry. Then when I am leaving, it truly was the closest I have gotten to getting nautious and physically ill as a women got on the elevator, and I'm sure it probably wasn't that bad, but the amount and the scent of her perfume was intolerable. We won't even go into computer or traffic issues while you feel like this.......The fun things this stuff puts you through.

Made it home however wthout taking anybody's head off and took a nap as that is what I obviously needed. When I got up, I felt a bit better and very restless. I know I'm not up for the club just yet but needed to move, get outside and do something. It was late in the afternoon and the sun low enough on the horizon that I felt comfortable taking my little lilly white alien head out into the elements. Remember, the poor thing has never seen the light of day before and under the best of circumstances, you have to be extremely careful with the sun when you have this garbage still running though you as I know it is. Anyway, was probably a bit premature trying to get in some exercise but did get some laps done in the pool. It didn't last long, but it felt good to get wet and stretch. Now for some dinner and sleep to put this day behind me.

Monday, March 22, 2010

I'm Back....Home too

Sorry for the delay but been a rough couple days-nothing major, just out of it and the whole computer thing just wasn't in the cards. As many of you know I did escape Saturday night without much fanfare. Fortunately, sans the Mr. Bill confrontation, this round went quite well again with nothing unusual health wise to report thank goodness. I don't recommend it but as long as I don't have a choice in the matter......As a matter of fact, I felt so good Saturday upon my release, decided to fire up some steaks with Mom and Lisa when we got home. Could have done without the grill smoke but boy were they tasty. Left the vino to them but the fact I am eating like a horse and have put some weight back on they say is good as I did drop too much too fast last time. Now to get through this "hangover" period and be able to get back on a workout schedule as to not gain it all back.......

Speaking of hangovers, a longtime family friend of ours who has recently gone through his own version of this, and been kind enough to guide me through some of the unknown and unexpected through his own experiences via his journal, e-mails and this blog. There are others out there as well and I thank you, but am mentioning this in particular as in his journal, he uses that phrase "hangover" to describe the lingering feelings of one of these treatments. They vary in severity and duration just as you may well be familiar with yourself so I'll be perfectly honest-I'm going to plagiarize it!- Hope that's OK Jack but it sums it up perfectly.

Yesterday I awoke after a terrible night sleep and realized I might have been a bit overzealous donning my chefs hat with the girls as felt like hell. Just think hangover-out of mind and weak weak weak, not necessarily nauseous but you don't want noise, light, conversation...changing channels on the TV is a challenge and exhausting so that was my Sunday. BLAH! (It's a real side effect... the blah's are in my prep materials-LOL) That might further explain how it is now Monday and I'm just updating this blog-again....the thought of hitting these keys just made me ill.

It continued throughout today and brought along a little friend in "annoyance." I did notice it last round but didn't mention but as it seems to have gotten progressively worse this round, it certainly does as this hangover also seems to test your patience. It actually started much earlier this time although I'm sure Mr. Bill had something to do with it as well. The littlest things.........SNAP! Sorry for those of you that have witnessed as that is so not my usual style. Anyway, I did go in this afternoon and get my booster and for right now, were doing okay. Let's see how another night sleep and more forced hydration will help for Tuesday.

Oh-FYI-there is movement on my next move and how to put the Mr. Bill issue to rest and I do believe a formal letter will be forthcoming after all. I also found I have some allies in the office I had some discussion with today-we'll have more details on that tomorrow-Good Night

Friday, March 19, 2010

Still think you fired me?

Apparently that is the way Mr Bill (I've revoked the respect of a title) still sees this. Whatever!

After spending no more than what I assume is the obligatory requirement for being on floor duty, maybe 2 to 3 minutes, to look. poke. listen and ask a few general questions, we haven't spoken. Fortunately, been no need too as am holding my own thus far in this session and the nurses and I got in under control thank goodness.

We obviously just had our last of these visits as he rotates off today. I had to love the fact he comes in and announces he doesn't want to get to close as he has a cold. Really? What the hell you doing here around chemo patients anyway, at least without a mask-yes you can stay away thank you.

Anyway a quick look in the throat and says looking great and I'll need to come in to the office for my booster. I tell him I've already scheduled that for Monday and he simply announces that I will be meeting another Doctor at that time who "should be able to work with me going forward and therefore keep it within his group so that all the records are there in one place" and with that, simply walked out.

Ummmm-let's go back to MY CHOICE and my primary and I shall be making that decision. The arrogance of the whole thing and now wanting to keep me within his group so the records are in one place. PLEASE!

Stand by!

Wednesday, March 17, 2010

Happy St. Patricks's Day

Well, over 24 hours in and although I didn't get to partake in the annual St Pat's festivites like the parade on the trolley and Murphy's block party, I was rewarded by again not running into the perennial train either. I got my doses of the 2 nasties as well as the ongoing 5FU yesterday and seem to be doing fine. No real side effects to report except I am getting fatigued faster and have already had a bout with those hiccups again a little earlier than last. Again, however if I can keep this up as is, I'LL TAKE IT!

I did have a neat surprise first thing however. I mentioned the trolley and my friend Karen who hosts it actually took the time and made a fly by Queens on the way to set up to decorate my room and drop off some St. Pats gear-no Jameson's or Harp's, but they wouldn't mix with my other cocktails anyway I'm sure. Thank you Karen. Had that followed up with 7 other visitors throughout the day and am honored to have such friends and family although will admit-I'm tired but thank you all.

Finally, to touch on the situation from yesterday....Wow, I knew the chatter would increase but it is amazing to find how many of you are out there. I've had more comments and suggestions it truly is unbelievable and let me tell you, the opinions are strong and unified. For the record, although he did "make his rounds" and come see me for a minimal time, it was clear he was simply going through the motion of meeting his obligations and has no change of mind nor regret or apologies about yesterdays fiasco. Apparently that is how it is to be so now I have started the ball rolling on this situation specifically as well as putting some of my future options in play so these suggestions and referrals will be great. Mahalo

Fatigue hitting hard so that's all for today, Good night.

Tuesday, March 16, 2010

Round 2 underway but not without issues

OK first off, I'm officially back at Queens for round 2 of this chemo regiment for the next 4 days. All checked in, PICC installed, juices starting to flow, got the PC card for the laptop and a few DVD's to keep me occupied , but my hope of having as uneventful an experience as last already spoiled and I'm still somewhat in shock at the experience.

As I've had a lot of feedback from many of you, pro and con, regarding the "issues" I have had with my Doctor and his office, I'm sure this will creates some chatter. Let me tell you, everything prior pales in comparison to this morning and I apologize up front as I foresee a lot of this blog being used to hash out this situation during my stay here this time.

So I check in at 10 and breeze through, get my room assignment and make my way upstairs to my home until Saturday. The nice thing about round 2, is I know what to expect and possibly how to expedite the process, so I start making myself at home and while unloading some of my goodies, my Doc walks in. He seems cordial enough, no mention of the new hair style but shakes my hand and asks if I'm ready to get started. I reply the sooner the better as the quicker I'm out. I go on to touch on the topic of the phone tag we played last week and express my hope to get on the same page on this over the next 4 days as he has rounds this time so we can talk. (You might recall I never saw him once on my first visit which I thought was odd)

BAM! His entire demeanor changes and he almost seems to rush me wagging his finger in the air telling me I need to stop screwing around and do what he says and get the port. This takes me completely off guard and I try to respond. He'll have none of it and again accuses me of cancelling the procedure twice prior to last week. and he's had enough. Again I try to get a word in and explain what transpired and he cuts me off and goes right into how he has had to accommodate me for the Super Bowl (he's been hung up on that as we had a joking conversation about not screwing up SB weekend in our first meeting the Friday prior-or at least I thought we were joking, ) a trip to Houston (that second opinion that obviously so irks him) and whatever else is bothering him about me. I'm sitting in a chair with my laptop on my lap and he again comes right up to me, leaning over with the finger wagging and pointing while telling me he is trying to give me the best care possible but I'm screwing with him. however this time he'll administer my treatment using the PICC and continue to give me the best care but "don't piss me off." He backs off but continues by telling me if I don't comply and get the port by next time I would be looking for a new doctor.

"Don't piss me off" and "comply" all while in my face? If I didn't have the laptop I would probably have been on my feet as this could be construed as an out and out threat the way he came at me but fortunately I do not react and do finally get an opening to fire back at this assault.

"Excuse me Doctor? Now you have pissed me off and first of all, I do not appreciate your tone, I am the patient here and are you even aware, or care what happened Wednesday to create this problem? Your nurse, whom I spoke with Monday after our appointment per your instructions, was making an appointment for just this procedure. As she was too busy, as seems to be the case too often, she was going to call me with specifics for Wednesday. It wasn't until 3:30 Wednesday afternoon that I again heard from your office. No one had the courtesy to call me prior to that yet it was on that call I am told that I needed to be here at 7:30 the next morning. I'm sorry Dr, but I do not see that as a cancellation on my part, but an error by your staff. Further, I arranged my schedule accordingly and blocked out Wednesday for this, so therefore no, I could not, nor would not drop everything to now loose my Thursday and quite frankly you can't honestly expect that." He just shook his head and gets all worked up saying "you needed it installed"

I try to pacify the situation and agree that I will need these things and will get them but I don't see the need to restrict my activities and subject myself to these procedures 6 weeks out without knowing exactly what the next step truly is. Further ,to have his staff make schedules on my behalf and not communicate such with me, yet expect I can just jump when they say, is not only inconsiderate of me and my time but as the patient, I would expect some courtesies and respect to be extended by you as to the situation. Instead, you choose to disrespect me by not considering what I am being subjected too, and continually blame me for what are staff issues on your end. Further you choose to not only insult me by that but stress me out with this confrontation before a major chemo treatment? That is unbelievable and I am simply appalled. I refrained from using the terms unprofessional or ethical but was close as that is what this is. He comes back with a comment that it needs to be done as it needs to heal and you will do it when I tell you too.

I start to reply and am cut off again -"Forget it, I'll go ahead and administer this cycle but after we'll be finding you a new Doctor."

He turns and storms out of the room-I have not seen him since.

I am absolutely in shock-I hadn't even noticed my new nurse had come into the room during this confrontation and is against the wall, jaw agape as well. We are both quiet for a moment and I finally ask are you Karen -Yes and what just happened? I wish I knew. Another nurse comes in to take vitals and she just tells her to come back as probably not a good time to take BP-for either of us.

I don't know what to do here-I'm still in shock as you sure as hell don't talk to a patient like that much less one about to undergo what I am. I will be contacting my primary on this as she needs to know but whether to file an ethics type complaint or not I'm just not sure-believe me I've already had some opinions sent my way but I'm just blown away right now. If this was my first round, I'd be so out of here-fortunately, I know what needs to be done and could care less if I see him again.

Going, going, gone

It's a new look! Don't think hair been this short since, well, never because there isn't any. I tried to be vain and keep it but it just got to be too much. I finally pulled the plug around 5 this morning when I got up and felt like Sasquatch there was so much hair everywhere but my head - that was it-out came the electric razor. I don't want to be dealing with that at Queens as not as easy to to keep things in order. Lisa been on me to get rid of it anyway so there it is-even created my one and only Mohawk for a bit-too bad it's not Halloween!!! Going in for Round 2 today so we'll catch up this afternoon

Saturday, March 13, 2010

The Gray's have company

We've moved beyond just the gray in the last two days and loosing some brown now-The question remains, are we simply pairing the weak soldiers or has the scalp finally succumbed to Docetaxel and it's time to bust out the electric sheers and just go for a new high and tight look- I actually wonder how much I lost last night on Prima-we had some nice breeze for Friday night races and I'm sure a few of you downwind of me.......Sorry. It's odd as I find my scalp is actually quite tender and sore so treating everthing up there gingerly, sans the wind tunnel last night. Anyway, I deliberately haven't cut it since this whole ordeal began for this very reason so a bit shaggy anyway so one way or another a clean up is due. It doesn't seem quite as bad as yesterday so can't bring myself to do it just yet but we'll see how the rest of the weekend pans out.

Thursday, March 11, 2010

Bye Bye Gray

Interesting side effects and hell of a way to get rid of your grays. I don't recommend it but thus far (knock on wood) that is the hair that seems to be coming out. Psoriasis apparently not a big fan of Chemo either as it seems to have cleared. I had actually heard that before-not the best way you want to treat it but so long as have to go through it, nice to see a benefit

Wednesday, March 10, 2010

Slippery! LOL

Once you make your mind up in how you will allow things to be done, it is refreshing to find you can actually find humor in what so recently irritated you so.

Recalling the appointment fiasco of Monday and the invasive medical devices........I just received a call from the nurse informing me of my pending appointment tomorrow morning at 7 a.m. My what? Mind you it is 3:30 p.m. now and the first I have heard of this. As opposed to seeming as if I'm being difficult, or "slippery" and "hard to pin down" as it has come to my attention he's referred to me as, I toss it back on her saying "Sorry, but when I left there Monday, we discussed this procedure being scheduled for today and I rearranged my schedule accordingly therefore tomorrow is out of the question." Further I tell her that as I hadn't heard from her, I came to the conclusion that at this juncture, I'm perfectly comfortable with the PICC again as it worked just fine on my first visit. It's not invasive, it was comfortable (as could be I guess), I could sleep...... I'll go ahead and schedule these procedures myself closer to the time I really need it.

I have to laugh at this point as I can hear her deflating and the silence....."Umm Mr Davis, does this mean your not going to go have this surgery tomorrow?" I reiterate that is correct as it is already 3:30 here Wednesday afternoon, the day you had told me to block out, and you now want me to drop everything and be there first thing tomorrow, I'm sorry. Not only is that not fair to expect of anyone, but this, and the tube, are procedures that I agree are needed and will be done, just not now . The voice gets meeker and she tells me the doctor wants it.

GOTCHA! He does, I don't.

She goes on to say what if he doesn't approve it? Approve what-slicing me open? Please remind him it's my body, my decision and if there are any further questions to call me directly please.

"Are you sure?"

Yes Dear I'm sure and I can't help but wonder how afraid she is of her boss?

Again-a little humor was cast on today and I actually feel a bit sorry for the nurse. Now to see if I get yet another call?

Speaking of calls-on a brief side note, it was very refreshing to get a call from MD Anderson today simply checking up on me and wondering if I might still consider visiting them for a consult after this next session-I just might won't I?

Tuesday, March 9, 2010

You want difficult!

Quite the response my venting post has generated! I seem to have hit a nerve here with some of you who have or are going through treatment and thank you for sharing your thoughts and experience as there is much to learn. What I have determined after I riled myself up yesterday is so long as he's accused me of being difficult....difficult I will be! I could care less what he likes, he doesn't do anything anyway, the nurses do and not even his nurses I might add so screw it. It's body and for now, there shall be no invasive installations of medical devices-I'll get them when I need them and I don't see that at this point of the treatment. What I do see is something that will prevent me from doing some things I enjoy when I am able and sorry Doc-that aint happening until it's absolutely necessary.

Oh and did I mention I'm really going to be difficult as not only am I going to get my primary Doctor here to get back involved as she actually seemed concerned about what is going on when I met with her last week. After all, it is the team she put together...I think it's also time to revisit with Houston just to see what they might be saying

Monday, March 8, 2010


I'm really annoyed right now and this is more of a vent than anything but right on point on my previous comment on churning. To be specific and timeline, I got out of treatment last Sunday, was told I needed to go into the office Tuesday for a booster shot-OK I get this. (1st visit) At that point, an appointment made with the nurse practitioner for follow up on Thursday. Alright but do I see the Doctor? Turns out I did and we discuss round 2.....(2nd visit) Now Im scheduled to come in next week for a pre-admission appointment. Really? (3rd visit) OK and they make that for today.

Today, all I am is a Guinea pig as the Doctor has a med student with him and I am just a specimen. He asks if I have a port installed or a feeding tube and I kind of laugh and say you know I never have had that done. He takes the position that this is my fault and must stop cancelling my appointments to get these installed. I stop him and say I have not done any such thing, we didn't have time before my last treatment to do the procedure and then I ask why at this point it is even necessay? I had spoken with his partner whom was doing rounds and visited me while I was in the hospital and he seemed to suggest that with only two treatment's left, a port install not necessary. I quickly see he does not like being questioned in front of a student nor happy about this conversation and flatly informed that that his colleague does not like ports however he is my Doctor and he does PERIOD! Sounds like a turf war but again, I'm the patient and if not needed, I don't want an invasive procedure I don't need. He tells me to stop being difficult. DIFFICULT???? I'm really not happy and in a quandary as to my options.

I get further irritated when he walks out tells the nurse to schedule these two procedures and to schedule a pre admit appointment for next Monday. HELLO-is that not what I'm fricken here for right now yet here we are scheduling yet a 4th visit within 2 week to say nothing of these "procedures" to install a port and tube???

Churn baby churn and I'm really pretty perturbed No I'm flat pissed right now. I need to cool down and look at my options for this specific point of my treatment. Leaning towards just going with the PICC again for now weather he likes it or not. Again just venting here but it is my choice?

My Week!

Had myself a great weekend and looking forward to a week for me! I actually got to get out with Lisa for a bit-real dinner and everything so feeling as close to normal as I guess I can expect under the circumstances, right until they tear me down again next week. Hoping to get a real work week out of it too except for the mandatory and what I consider to be excessive Doctors appointments. I really am getting frustrated now as this is so looking like these guys are wasting my time to churn the system to try generate more billings to compensate for the insurance shortfalls and allowances they claim are being imposed. Really now, could we not have done most of all this in one visit?????

Thursday, March 4, 2010

Dr's follow up

Well everything seems to be in order from a medical standpoint. Had a follow up today and they are pleased not only in how I came through the treatment but my white blood cell count up and have had a significant reduction in the size of the mass in my throat so can eat and breath just fine for now. I do seem to be keeping the mouth horrors at bay although I can feel that fight coming on and my taste buds are already heading south. Oh well it's all mini steps as they are so matter of fact in brushing by the good news and jumping right into the next treatment schedule that looks to be the week of the 15th-Uuggh so soon already? So much for St Patty's this year so we'll be making the best I can of it until then.

Wednesday, March 3, 2010


Funny as when I read that on the sheet of side effects for FU-5 I had to laugh as that is exactly what they list -"blah's." and that sums it up. I'm not ill per se, but run down, and lethargic and just generally don't feel good. I went yesterday to get my booster shot to build the cell counts and stopped by the office. That lasted about 20 minutes and the body said NOT- but I figured today the booster would have done its thing and I would be fine to go get some work done but maybe not. Obviously there is more too this than flushing as after 3 days, I should be pretty well purged yet everything seems very content in slow motion-guess maybe one more day advisable and I'll make some headway.

Monday, March 1, 2010


It's almost surreal this morning with the cold and the wind and the fact I'm so exhausted but that seems to be it...exhaustion and probably dehydration. I literally almost passed out last night after that brief post for 12 solid hours and now it's still almost a numb feeling. Not sure I even moved by the look of my sheets and considering I am usually a restless sleeper, that too is odd. Nothing terrible mind you and the brief nausea and hiccups spasms Ive been having are gone, I just feel exhausted and out of it-just like the Doc said Monday would bring-again however, no train so I'll take it!

Without a doubt, I know I need to continue to hydrate and flush and I wonder if the sudden lack of such is part of being this wiped out. For days, we've been streaming potassium to counter the poison and suddenly- it's closed system keeping the last of that chemo in! I need to ingest as much liquid as I can although I'm already drowning but gotta do it and get this stuff out. Ironically, for next time I hope to time it better and finish the last hydrating bag as last night, that FU-5 ran out and I was gone-the rest of that hydration certainly couldn't have hurt.

Anyway time to call the Doc and see the next step from here but think I'm on my own for a few weeks.