8-week follow-up scans and doc visit: brace yourselves, here it comes…

Dear Friends and Family-

This is difficult for me to write, so bear with me. I had my 8-week follow-up visit with Dr. Leal yesterday. The news was not good. It appears that the cancer has started growing again. Yes, after all that treatment this spring. I have not been feeling my usual self this past two months, which I attributed to continued side-effects of the chemo. While some of that may have been true, ultimately the cancer is responsible for the majority of my symptoms and general sense of low-energy and less-than-well-being. The major tumor in my upper chest is again pressing on major veins and arteries, as well as whatever nerve is making me start to go hoarse again. One of the lobes of my right lung is now blocked off and the rest are partially occluded, explaining my shortness of breath.

Dr. Leal mentioned a third chemo drug that we could try, although it has a very low response rate but with all the usual side-effects. I am not too keen on going this route again anytime soon, given how I have been feeling this summer. My gut tells me that it would be trading any chance of feeling OK for the next few months and beyond, for a 10% chance that it would succeed and buy me a little more time. It would also incur a much greater likelihood of illness and hospitalization than before, because I am that much more worn down after all I’ve been through than I was even 6 months ago.

She said she would ask the Radiation people if they think I am eligible for any more of that treatment, although my sense is that the probability of their agreeing is low. There was another, very aggressive chemo drug combo, but I turned out not to be eligible for that, so it’s out.

That led her to mention the “other” option: hospice. This is essentially where I forego any further treatment designed to fight back the cancer, like chemo and radiation, and opt to pursue palliative care only. This is designed to keep me comfortable, treat my symptoms as they arise, and make sure that I stay as much in control of my remaining time as possible. When cancer patients get sick enough from chemo, they can suffer from all kinds of infections and illnesses, and very often end up in and out of the hospital a lot. This also does not appeal to me. Hospice is designed to keep the patient at home for as long as medically possible.

Unfortunately, part of me hears “hospice” and thinks “giving up”. I have a strong will to live, and I am still very much in the mindset of “what do we do next?” It’s the hardest thing to try to change that mode of thinking. I so very much want there to be more good options to try. I can be stoic and put up with chemo and its effects, as long as there’s a decent chance for real benefit from doing it. That’s what we guys do – soldier on through! That’s what I’ve been doing for the last year-and-a-half. I’ve gotten fairly good at it. However, it’s a huge change, going from “Forward, March!” to “This Far and No Further”. Deciding not to look over the next hill is rough.

Now I must shift my thinking to management. Time management. Symptom management. Expectation management. I respect the philosophy and goals of the hospice movement a great deal. I agree with all of it in an abstract, intellectual way. But now that it’s MY neck on the line, it’s quite hard to embrace it personally, for myself. To be honest, I have spent the last couple of months feeling pretty poopy, and knowing that yet another round of chemo anytime soon would be a genuine hardship as opposed to simply an annoyance. There have been times when I’ve contemplated stopping treatment in favor of attempting to feel better. Moreover, there have been times that I have contemplated pursuing yet more treatment, and upon reaping a near-certain harvest of horrible side-effects and illness, well imagining myself to be better off… well, you get the point.

I can’t really find a nice, neat bow to tie this post up, so I’ll just end it here. Because of my hoarseness, it’s difficult to talk for any length of time, so I’d prefer emails to phone calls if possible.



4 thoughts on “8-week follow-up scans and doc visit: brace yourselves, here it comes…

  1. I am sorry you are having to make such tough decisions. I support you. You are a smart guy and will make the best choices for yourself. (You are also a very talented artist and f-ing hilarious.) I hope you have an appetite on Monday for a lovely lunch. See you and J then. Love to you both. xo-debbie

  2. My love is with you and Jeanette, Gordon. I wish you strength and peace as you make the next decision. Today is a very beautiful summer day and the breeze feels amazing. I hope the sun is shining on you. XOX, Lisa

  3. Thinking of you both. Such huge decisions and heavy discussions. None of us ever imagine we will have to go through this. Know that we are here for you. xoxo

  4. Hello Gordon and Jeanette,

    You both have been flitting in and out of my mind, a background loop always running.

    Today, I sat down to write. I, like Connie, have been trying my hand at poetry. I am just puttering along – floundering really.

    In a poem I am currently working on, I reference Walt Whitman’s Leaves of Grass. Why that poem? Because I, like you and perhaps like all of us – think about life and its mysteries.

    Today, I re-read his poem and was as moved as when I first read it 42 years ago -seated by a slow running brook in Pennsylvania – with a found copy of it in my hands.

    His words and what says are so beautiful that I want to share them with you today.

    Leaves of Grass, Walt Whitman

    A child said, What is the grass? fetching it to me with full
    How could I answer the child?. . . .I do not know what it
    is any more than he.

    I guess it must be the flag of my disposition, out of hopeful
    green stuff woven.

    Or I guess it is the handkerchief of the Lord,
    A scented gift and remembrancer designedly dropped,
    Bearing the owner’s name someway in the corners, that we
    may see and remark, and say Whose?

    Or I guess the grass is itself a child. . . .the produced babe
    of the vegetation.

    Or I guess it is a uniform hieroglyphic,
    And it means, Sprouting alike in broad zones and narrow
    Growing among black folks as among white,
    Kanuck, Tuckahoe, Congressman, Cuff, I give them the
    same, I receive them the same.

    And now it seems to me the beautiful uncut hair of graves.

    Tenderly will I use you curling grass,
    It may be you transpire from the breasts of young men,
    It may be if I had known them I would have loved them;
    It may be you are from old people and from women, and
    from offspring taken soon out of their mother’s laps,
    And here you are the mother’s laps.

    This grass is very dark to be from the white heads of old
    Darker than the colorless beards of old men,
    Dark to come from under the faint red roofs of mouths.

    O I perceive after all so many uttering tongues!
    And I perceive they do not come from the roofs of mouths
    for nothing.

    I wish I could translate the hints about the dead young men
    and women,
    And the hints about old men and mothers, and the offspring
    taken soon out of their laps.

    What do you think has become of the young and old men?
    What do you think has become of the women and

    They are alive and well somewhere;
    The smallest sprouts show there is really no death,
    And if ever there was it led forward life, and does not wait
    at the end to arrest it,
    And ceased the moment life appeared.

    All goes onward and outward. . . .and nothing collapses,
    And to die is different from what any one supposed, and

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