Thursday, November 12, 2009

A nor'easter of bad news

Dr. B1 already let the cat out of the bag about my biopsy results a day earlier, so I didn't know what to expect when I showed up in Kaiser's Head and Neck Surgery Department on Wednesday for my post-op appointment.

Once Dr. B1 entered the exam room and placed a hand on my shoulder, however, I had a gut feeling about what he had to say.

He logged on to his computer and called up my chart and the pathologists' notes. Dr. B1 took six tissue samples in last Tuesday's biopsy, beginning at the base of my tongue, where cancer was first detected in January, and moving forward toward the front of my face. From my chin, he carved out a hole about the size of a dime.

His harvest of flesh struck the jackpot: Each of the samples Dr. B1 captured contained carcinoma. Six skulls and crossbones in a row.

What this means, Dr. B1 explained, is that the cancer did not respond to the radiation treatments and chemotherapy I had last winter, notwithstanding the midsummer biopsy that produced "no evidence of cancer."

"You must feel like you've had a load of bricks dropped on you," he said, then adding that it looks like I'm now "caught between a rock and a hard place."

If I could talk, I would have interjected, "That's two cliches in one sentence, Doc. I'm cutting you off."

He described what a surgical response to my cancer surge would look like. First, my tongue would be removed, and then my mandible. Bone grafts from my leg and arm could make up some of the loss, but whether they would work would be uncertain, and cancer could still return.

The whole thing made me queasy, so I was relieved when Dr. B1 said that surgery wasn't a viable option.

That left chemotherapy as the next option.

I really snapped to attention when Dr. B1 told me that the chemotherapy would not be "curative" but instead "palliative." In other words, he thinks that a cure is not possible. The best that I can hope for is controlling the symptoms of the cancer.

You see the term "palliative care" a lot in hospice brochures. I wasn't prepared to see these words introduced into my medical vocabulary.

Dr. B1 and I spent a long time not saying much of anything to one another. I quietly tried to absorb everything that Dr. B1 had said, and he sat beside me.

After several minutes, he passed me off to Dr. McNicoll, another surgeon in the Head and Neck Department.

I wasn't really clear why I was seeing a new Head and Neck physician after more than a year of office visits and three surgeries with Dr. B1, but I was certainly open to hearing another doctor's assessment of my situation.

Dr. McNicoll didn't pull any punches. He said that surgery would mean cutting off "half of my head," and his take on the chemo was that nothing can really cure me at this point.

So he took the discussion in a new and wholly unexpected direction. He urged me to think about how I wanted to spend my days: doing things I enjoy or running around seeing oncologists and sleeping in hospital beds tethered to an IV.

He added that I might want to see a social worker about an advance directive.

Both appointments were over inside of an hour. And after I checked out with the nurse at the front desk something happened for the very first time: I was leaving the Head and Neck Department without having a return visit set up.

My hub of my Kaiser experience is now drifting eastward, down to the oncology department at the complex on Vermont Avenue. I'll be seeing Dr. B2 there on Wednesday to discuss chemotherapy.

Where this is all going to lead is anyone's guess.

My dad reminded me on Wednesday that when faced with dicey odds, I have a history of proving doctors wrong. I'm counting on history repeating itself.


  1. I've been reading your blog for a has made a difference in the way I think about my own cancer journey, I thank you for that. I am so overwhelming sad to read this news. From a total stranger, I'm sending you thoughts of strength and renewed health. And if I see you, I will yell out..."I read your blog"...

  2. Paul, I am so sad about this recent news. I have faith that you will somehow beat this,you are so strong and courageous, and you come from a long line of "fighters". Keep up the fight, love ya

  3. I'm so sorry for you Paul and hope your Dad is right. Ken

  4. Your blog entry has been weighing heavily on my heart all day. I think you are incredibly brave to be able to share so plainly what is going on and how you are feeling. I will, however wildly, have faith in positive outcomes, and while I can't say I have had much success with the prayer route, I'll give it a shot on your behalf. Jude

  5. I am so fortunate to have friends, family members and readers of this blog pulling for me. Thank you to everyone who posted here, left a comment on Facebook, or sent me email or a text message today to wish me well. This afternoon, I learned that a friend asked her mom to "get the Franciscans on the job." She said that once the request gets out there, "an army of radical, nutty, protesting, cussing, wine-drinking, civil-rights defending Franciscans will be praying" for my quick recovery. I feel I am in very good hands!

  6. You are in good hands, honey, through all the prayers coming your way.
    Stay strong, babe. Love you.

  7. Paul, I do not know what to say. Everyone is praying for you and we all know you will get better. Keep fighting and keep being positive. Negativity feeds the cancer. Think of the words of Lennon / McCartney ...

    "When I find myself in times of trouble Mother Mary comes to me. Speaking words of wisdom, let it be. And in my hour of darkness she is standing right in front of me. Speaking words of wisdom, let it be."

    Mike (the brother)

  8. Paul,

    You are in my thoughts and prayers.
    I keep thinking of the Elvis Costello concert at the Bowl and how great that energy was and how great it was to see you.
    Breathe in some of the positive energy of that night.


  9. Dear Paul,
    I know this is the hardest part of life, which is facing the challenges of not knowing how it all will end. I think of the Garth Brooks song "The Dance". We never know how it is going to end, yet we still do the two step with our next partner. I don't know if you get this...but the issue here is that it is ok to talk about what ever path you decide to take; and you never know what is around each corner. Be prepared. Know what is right for you. Talk with people who are not afraid to talk with you about issues like what you are faced with. I am here should you want to dialogue.

  10. Oh, Honey....What a blow. Dean told me last Wednesday. I hope you can feel all of the invisable Hugs and Love which continue to stream out to you. I so admire you and your forthright courage. I too, hope your Dad is right. You've come through so much. I don't know what to say, except that you are loved.

  11. Dear Paul,

    I never met you, but I consider your brother Mike a dear friend. He has always talked proudly about you and how you are the most rabid stones fan on the planet. Sounds like you are a tremendous battler! Keep thinking those positive thoughts and hopefully the energy you are saving by not talking can be focused in a curative manner. Miracles do happen! You gotta believe!