When something fleeting & specific becomes everlasting…

Ahh lovies, it has been much too long since I last I wrote. I have been contending with so many ideas and feelings that my ability to type has been rendered immobile. I walked away from my last “cleano” with the feeling that maybe it could be the end. The same feeling I have sometimes when I look at myself in the mirror and see a familiar yet so unfamiliar person staring back at me. A person who looks fine and healthy and who thinks this is unreal and certainly I will wake up at some point. Or maybe, when I visit the doctor he will say “amazing Lina, your tests show such remarkable results that you are clear and done.”

But of course that is not the case. I had my CAT scan Wednesday (3/18) and met with Dr. Ryan at MGH on Friday. He said the “cleano” is working and that the 4 tumors are smaller but still there in my liver. The plan now is that I will get the left side liver embolization on the 6th of April. I will then do 2 more rounds of “cleano”, and have liver surgery the week of May 17th. For those of you with great memories for birthdays; yes, this means I will be spending mine in the hospital in Boston…. I think I will actually just forgo this birthday all together and turn 40 next year, okay people?

While I was waiting for my CAT scan( in my ever so attractive johnny get up) there were a few people waiting to be called as well. As I sat there in the bubble of my own experience I felt likeI should reach out and talk to someone. Why were we all sitting here pretending we were alone. But I was feeling shy and didn’t know if it was okay to just ask “What are you here for.” As I struggled with this conflict one of the men asked me a question, opening the door. I ended up having short conversations with 2 of them. One was Robert, who was getting a CAT to see how his cancer was responding and having peripheral neuropathy, like me (prickly tingling in your hands feet and throat when in contact with colder than room temperature things). Robert was a biggish man and had to wear 2 johnnies one to cover the front, the other to cover the back. It looked like he was wearing a cape. The other was a dark brown man with straightened hair named Lonnie, who was having trouble with his liver and getting tested, the doctors were saying it was cancer. We were quite a mixed bunch.  But connecting and wishing each other luck was a nice human experience.

reach out with your voice or your hand and touch someones heart

One Friday ofter my appointment I saw Robert again. He was alone so I walked over and said hi. What I found out from him was so devastating. A self described hypochondriac, he had gone to the hospital in Quincy 5 years ago because he had terrible pain in his stomach. They gave him an ultrasound and said they thought perhaps it was his appendix but the ultra sound showed his appendix to look fine. Turns out in September of this year, after being uncomfortable for so long he went in to MGH for a second look. It wasn’t his appendix they had seen, it was a tumor, in his colon, but now it was in his liver and stomach as well, and incurable. He is responding well to the chemo, but they give him 7 years. He is a very sweet, gentle man who is pushing through this cancer for the love of the mother he lives with, who has already lost two of her 3 children. Otherwise, he said, he would just give in to the inevitable. I thought he was older than me when I first met him, but upon further conversation I think he is probably about the same age, if not perhaps younger.

When I left Robert to get into the car with Adrian, I fought the tears that were coming. Tears for the injustice of Robert not being taken seriously, which is how I sometimes feel about my Cambridge doctor not taking my knowledge of my body seriously last spring. The feeling that could have been different. But it’s not. I had tears for Robert’s aloneness in this, and tears of great appreciation for the cornucopia of love, family and friends that I am blessed with.  The beautiful thing about talking with Robert is he isn’t angry or sad, in fact, though standing there facing him and realizing we are opposite in so many ways, he had an attitude that was very similar to my own. This cancer journey is not about fair or unfair, or what if’s. It is, simply, what it is. And I am who I am, now.

Take a minute for me, and share some of that amazing love and energy and think about this man you don’t know and I will most likely never see again, Robert Doyle.

“Imagination is stronger than knowledge – myth is more potent than history – dreams are more powerful than facts – hope always triumphs over experience – laughter is the cure for grief – love is stronger than death” (R. Fulghum)


9 Responses to “When something fleeting & specific becomes everlasting…”

  1. Tracey Says:

    this is so beautiful! I love you as always!

  2. Brooke Says:

    thank you Lina!! Wow, I’m thinkin ol Robert… I really am….
    and I’m thinking of you… with loads of love in this ol’ heart!!
    I’m huggin…. from here!!
    xoxooxoB.

  3. Sarah Says:

    Robert will be in my prayers tonight —definitely. As always your posting is insightful, sage, and solid. I re-read this posting three times because there was just so much there to absorb and take to heart. Beautiful. x S, J and C

  4. Pam & Harry Says:

    Lina…
    We share the same birthday week…and Harry and I will be there to
    see you….and spend time. I really look forward to your stories…and such
    good news about your liver. It brightened up my day.
    Can’t wait to see your beautiful face and know that surgery went well.
    That would be the bestest of all gifts.
    L. Pam

  5. Amy Says:

    your writing always gives me pause. there is so little time to reflect on so much that happens every day that is important. the series of quotes you put at the end of your post were well-matched with your thoughts and gentle urges for us to refocus, reach out, be. thank you friend.

  6. Sue-Sue Says:

    Dear Lina,

    When I read your blog, the reality of missed diagnoses really hit home. How many people have been brushed off by their primary care physicians for a whole range of problems, whether because the doctor is ignorant of the literature or is reluctant to charge a procedure that is OK for one age group (e.g., colonoscopy for those over 50 yrs old) but not routinely applied to another, lest they get in trouble with the insurance company. Neither is tolerable. I think that all of us need to militate for better medicine and be more demanding of our doctors. They are so NOT GODS. On the other hand, our bodies may be more resilient than we think and more able to heal than we think. I think that a brave heart, a positive attitude, as well as healthy living (fresh air, good for you food and many, many, many hugs from your lovies and their pals–like Nemo) can take you further than any doctor allows.

    So there. I am sending you my mental hugs. Get warmed up and tanned and swim with the dolphins.

    Love,
    Sue

  7. Jane and Hans Says:

    Dear Lina,

    I so agree with what Sue has written particularly about the resilience of the body in healing, an internal knowledge programed into us at birth through a Darwinian link. Given food for body, mind and spirit as well as rest and nourishing sleep (almost a hibernation if it is allowed) I believe it works what we mortals sometimes refer to as miracles.

    Will you guys be able to pry yourselves away from Jamaica? Hello and love to you all. What fun, and there is a dragon in the pool too?

    Love, us

  8. Erik Says:

    These experiences you write about strain the ability of words to express. I find myself compelled to think about someone I have not ever met and have little connection to [initially] in Robert, and I struggle with feelings and apprehension about the future.

    Your experience with Robert shows us all that, no matter what the circumstance, pleasant or not, that bridging the distance to others with sincerity can be a step towards wholeness as well as a shout against unfair realities. It also shows that we have some degree of control over this reality.

    I love you guys, a ton, and hope to see you soon!

    E

  9. kate Says:

    So beautifully written lina, as always. Knowing as i just read this that you are now in the sun, warming your bones and playing in those waves brings a smile to my face . Thank you for sharing your insight and helping us, your friends, understand a deeper life perspective as you go through your journey. So much love to you and A

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