May 10, 2014 (Sat) – Who’s on First?

abbott_costelloAbbott and Costello would have been proud. This past week and a half have been, shall we say, interesting. If you look up “miscommunication” in the dictionary (OK, Google – when was the last time you looked at an encyclopedia, if you even know what one is?), you’d see a picture of two doctor’s offices, along with moi, trying to put something together that should have been very easy. Especially in this day and age of e-mail, voice mail, cell phones, yadda yadda. Shoulda used a carrier pigeon – it might have been quicker and more straight forward.

So in summary format, here, day by day, is how it went down:

Wednesday (April 30): Had my PET scan in the morning. They said my onc-doc should call within 24 hours.
Thursday (May 1st): Per my uncle-docs’s earlier request, I called him to remind him to review my scan. Not sure why that would be up to me but hey, whatever speeds things along. Had to leave a message after being on hold 5 minutes. Later that afternoon, about 5:30 or so, as you know, I got his not-so-happy-news call at that restaurant. He said he would set up a consult with the lung cancer specialist (I shall now call “lung-onc”) at UCSD Moores Cancer Center. The plan was that her office would call me to schedule an appointment. Or so I understood.
Friday (May 2nd): Based on prior experience, I honestly did not expect to hear from them on this day. And my expectations were met.
Saturday (May 3rd): Worry, fret, worry, fret…
Sunday (May 4th): Breath of Hope Walk – awesome support for Team Craig – Get Fuzzyhesaidshesaid
Monday (May 5th): Called the clinical trial lady at the lung-onc’s office at UCSD to check on the status of my appointment. She said that the two docs had spoken and she thought that they had indicated that another biopsy would be in order first, before I met with the lung-onc. She said I should hear from my regular onc-doc’s office to schedule that biopsy. Can you say “ping-pong?”
Tuesday (May 6th): I called my onc-doc’s office late in the morning, and after 10 minutes on hold (somewhat common for that office), the nurse came on the line. Of course my onc-doc was out for the rest of the day. She said she had nothing in her records about scheduling a biopsy. She indicated that she would text my onc-doc to see what was up. She later called and said he texted back indicating that he knew nothing abouWahtdoyouthinkt a biopsy. He said he would get in touch with the lung-onc specialist to work things out.
Wednesday (May 7th): Got a call from the onc-doc’s nurse saying that the two docs still hadn’t spoken, that they were waiting for the lung-onc to call them. She said she’d call me back that afternoon. I did not hear back from her by 4:30 so I called again and she said they still had not heard anything. She’d get right on the phone and call me shortly, or worst case, the next morning. Guess which it turned out to be? Duh.
Thursday (May 8th): Got a call from the onc-doc’s nurse who said they (the two onc’s) had agreed that I should see the lung-onc specialist first and that I should expect a call to set up that appointment. Can you say “deja vu?” That is exactly where I was a week before. So of course I did not hear back on Thursday. Another Gomer Pyle surprise-surprise. Not.
Friday (May 9th): I called the lung-onc’s office to see about the appointment and the person I spoke to initially Hot Potatosaid she didn’t see anything in the file about scheduling an appointment. Why was I not surprised? As she dug deeper, she saw that there was a note about setting up an appointment and yes, she could do that for me. Initially she wanted to schedule it a week and a half away and I told her that was not acceptable, that I had waited over a week and nothing had been done. So she finally got me scheduled for this Wednesday.

However, that was not the end of the story. My wife called me right after I got off the phone to say that there was a message on our answering machine from someone else at UCSD (yes, we still have an answering machine, along with our land-line) that said I was scheduled to see the lung-onc on Monday morning.

Don’t get me wrong. I feel that I have had excellent quality of care over these past 15 months or so. My onc-doc is a great guy, even though there have been a misdiagnosis or two (remember my arthritic hip?). And the lung cancer specialist is the expert in town. But trying to get the two of them on the phone at the same time is next to impossible, apparently. And the support staff are seemingly, OK obviously,  not always in the loop. If I hadn’t taken the initiative (several times), I could virtually guarantee you that I still would not have an appointment. Now, I realize that communication where I work is always 100% accurate and timely. OK, you can quit laughing Kris and Wendy. So I really am not in a position to throw stones. And yet we’re talking a delay in whatever treatment is next on the agenda. And as the patient, knowing the Tarceva has probably run its course, I feel like a sitting duck. And of course, now that I know something is brewing in my chest, I have started to feel some discomfort there. Power of suggestion or ??

In the meantime big fuzzy-wuzzy is having a litter in my chest, and who knows elsewhere. In my head I envision a bunch of pacman-type creatures gobbling their way through my upper reaches, with no ghosts to interfere with their progress. All the while I wait a week for news of an appointment that will only (hopefully) provide the options available to me. But no active treatment yet, other then the Tarceva, which may or may not be doing any good at this stage. Obviously Tarceva is not the super hero it once was. But we knew it would lose its super powers over time and I am not dissing it. Mr. T has allowed me to live a fairly normal life for the past year+; a fact I am eternally grateful for.

So that is where I stand. I am meeting with the lung cancer specialist at Moores late Monday morning. Hopefully after that meeting we will have a game-plan in place so we can begin picking these buggers off. Did I just say pick and buggers in the same sentence? Sorry ’bout that.

Although we will have to wait for the official word, my guess is that there are several possible options. A biopsy may be ordered to see if Mr. Fuzzy has changed (mutated) or still has the same composition that the first biopsy a year ago determined. If it has changed, perhaps there are other drugs that might offer some benefit. Or there may be a clinical trial that I am eligible for. If not, chemotherapy may be next on the menu. Stay tuned.

Team PhotoAnd although many of you are probably sick of seeing yet again, one more Team Craig – Get Fuzzy photo,  for those not on Facebook, I need to add a final chapter to that wonderful event. We by far had the most participants (over 60) of any team and we came in 2nd in the amount of funds raised. Not too shabby. Over $100,000 was raised by all of the teams for the Moores Cancer Center in support of lung cancer research. Fair warning, I’ll be hitting you all up again a year from now. 🙂

Business as usual. Day at a time.

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9 thoughts on “May 10, 2014 (Sat) – Who’s on First?

  1. Geez , so sorry this happened to you. My brother-inlaw was (is for follow ups) a cancer patient at USC. There you get a team of doctors and other professionals that regularly meet face to face for treatment plans, changes etc.
    Not sure if there is a similar approach anywhere in SD but it keeps frustration and stress levels down. Your juicing is proactive and your fuzzies aren’t going to like that you are becoming an expert juicer.
    Hopefully all will fall into place this week and plan will be in full swing soon, like Tuesday…geez again!
    NC

    Reply
  2. All I can say is that this level of miscommunication is totally not acceptable — no matter the caseload of the doctors. You have the patience of a saint. Also, great news on the funds Team Fuzzy raised. Rock on!

    Reply
  3. Sorry to hear about the frustrating situation…seems more and more common these days…very best of luck, Craig.

    Reply
  4. I’m sorry you’re having to deal with this, but there is absolutely no excuse for all that miscommunication. I wouldn’t have been as patient as you were. Or maybe I’m just spoiled with the great communication I’m used to with my doctors.

    Reply
  5. I am always amazed that you sign off with “business as usual”…as unfortunately nothing seems usual for you these days……I guess you should be thankful you are not at a Veteran’s Hospital, especially the one in Arizona. Glad you are the type to take matters in your own hands….sad but necessary in many instances these days.
    Hope to see you next Saturday Craig.

    Reply
  6. Sounds like the government! Keep at it Craig. Juggling Docs is an art form and you are perfecting it!

    Love you, my friend! Wish your better half a Happy Mom’s Day

    Karen Spencer ks9013@gmail.com 916 300-2057

    Reply
  7. I remember how aggravating these delays were!! Praying that today you get a new plan that will promptly kick fuzzy’s butt!!!

    Reply
  8. Craig,
    so sorry that you have had all this “miscommunication.” You of all people do not deserve that type of treatment, but its a lesson for people to be very proactive in their healthcare. Be the sqeaking wheel, our positive thoughts and prayers are with you Criag.

    Reply

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