Hope: one of life’s staples

Last Tuesday was my day to drive to Boston for appointments. It had snowed several inches the night before, (spring, what spring?), but the main thoroughfares were clear. Dr. Shaw was on a well deserved vacation last week, so I met with her nurse practitioner, Stephanie. When I went to infusion to pick up my paper bag full of crizotinib, I was led to a bed rather than a chair, which meant I would have a brief acupuncture session with Irene. She always inquires as to what sort of treatment I would like, and this time I asked her to expound upon the possibilities. When Irene mentioned euphoria, I told her that was exactly what I was looking for. Six needles later, and I was feeling blissed out. Count me in as a believer.

At the conclusion of my appointments that day, I had a date with my friend Ginger. She was diagnosed with lung cancer twenty six years ago, and despite an initially poor prognosis, Ginger’s still enjoying life. I also have a neighbor down the hill, Nancy, who twelve years after a diagnosis of advanced lung cancer, has been told by her oncologist that she doesn’t need to see him again.

Linnea and Ginger

I view Ginger’s and Nancy’s continued survival as the sort of encouraging news that can keep me going even on a bleak day.

True confession:  I’ve been dealing with a little bit of personal malaise. Some of it is distinctly seasonal. As David aptly noted the other day, winter has really worn out its welcome. Today’s temperature is barely above freezing, the wind is howling, and our yard yet resembles a glacier. Peter was sick over the weekend and I’ve become unwilling host to the virus as well. “I’m sorry I’m such a vector”, he said yesterday.

And then I received an email from my dear friend Guillermo which contains bad news. He gave me his permission to reprint it:

Look for clinical trials for guys running out of options.
Remember to mention Letting go from The New Yorker
http://www.newyorker.com/reporting/2010/08/02/100802fa_fact_gawande
You can include this email or part of it in your blog.
I will say Hola to my amor Beryl and Honey too.
I am taking dexamethasone steroids and feel great in a real greater sunny day.
I have stumbling news that you can see in email copy to Diana and Laura:


Soon we are going to be free to enjoy vacations, for Beryl and I my first choice is a cruise on rivers of Spain and or Portugal.
Maybe in summer also we can go the four of us in 7-10 days rivers cruise to our roots , maybe our last trip together paid by me.
Laura and Diana can reconnect sharing a cabin. We all can share dinner tables and port side trips. Opportunity calls.

Chemo with Alimta, my last hope, was suspended with poor results on X-ray 23 Feb comparison with prior 7 February 2011:

” Bilateral pulmonary parenchymal modular opacities are more numerous and larger than before.

A predominantly loculated right pleural effusion with opacification of the lower right lung is unchanged.

IMPRESSION: Progresive metastatic disease; lymphangitis carcinomatosis of the right lung.”

Note: in 2005 the NSCLC diagnosis was for 15% survival at 5 years, today over 5 years latter and knowing my original symptoms and analysis of similar tumours gives me 8+ years with my lung cancer. Abuelos lived over 90+ years with poor support in Argentina.
I expect to enjoy more life that the average patient. Don’t worry but participate and support me.

I envy Placido Domingo voice and lungs. A vacation in his and abuelos country  is appealing.
He just did a free concert in Buenos Aires, 9 de Julio avenue, 150,000 people attended.
Here a few tangos with him
http://www.videosurf.com/videos/placido+domingo+tango


Abrazos y besos Dad


I was really, really hoping that the Alimta would do the trick for Guillermo. However, I continue to admire (and adore) his spirit. I am reminded of something I read in a book compiled by Philip Harnden:  Journeys of Simplicity, Traveling Light. In this particular passage he wrote about the poet Raymond Carver, who was diagnosed with terminal  lung cancer at the age of fifty. After his death, an errand list was found in one of his pockets:

Eggs
peanut butter
hot choc

Australia?

Antarctica??

Hope. The expectation of warmer days and further options; longer lists and continued adventures.

15 responses to “Hope: one of life’s staples

  1. Oh.
    My group friend David died this weekend. Crizotinib brought him momentary relief – and renewed hope, but it was dashed quickly. Another on-line friend is being treated for swelling in the brain post WBR – we are all on alert for healing Hawaiian breezes to soothe his steroided soul.
    For Guillermo – I often wonder how well we can thrive off treatment if we fill our life with what we want and need. Please show us that family, friends, travel, and sharing of love are enough.
    Thank you so much for Ginger, Nancy, and your own story. And here’s to spring bringing more color and light to us all.

    • Stephanie, I am so sorry. Such a mixed bag, all of our relationships. I have come to care for scads more people that I ever did prior to my diagnosis but have also lost far too many. It is good and right to care but oh so difficult as well.
      I wish well for your friend and our mutual friend Guillermo too. I wish us all well.

      Love, Linnea

  2. I love this list, Linnea. When Silas was getting radiation treatments for the last time, he began to make a list as well. His writing had gotten quite small, but still legible. His sister Phoebe asked what he was writing. “A list,” he replied, “for a barbeque.” We looked the list over, it had skewers for kabobs, hamburgers, etc. And as for who could attend, he wrote, “anyone who wants to. no drama…” I just love that note to this day. Some day I will hold a “No Drama” barbeque in memory of Silas. It will be perfect. xo

  3. Hi Linnea,

    This is a great entry, by both you and Guillermo. Having just lost Andy a few months ago, I know that there are no guarantees, and while modern medicine is incredible, and we are gaining insight into this disease (and someday will beat it, of that I am sure), it is hope that sustains us through this battle. Hope for more life, for health, for normal and extraordinary times, for BBQs and Australia.

    Cheesy at is, I have read, and watched, the final scenes of Shawshank Redemption a lot during the past year, and I’ll leave you with quotes that I wake up to everyday –

    “Remember Red, hope is a good thing, maybe the best of things, and no good thing ever dies..”

    “I find I’m so excited, I can barely sit still or hold a thought in my head. I think it’s the excitement only a free man can feel, a free man at the start of a long journey whose conclusion is uncertain. I hope I can make it across the border. I hope to see my friend and shake his hand. I hope the Pacific is as blue as it has been in my dreams. I hope.”

    Tim

    • Tim, I don’t think there is anything cheesy about the Shawshank Redemption. Or hope. I love the quotes…and what a good thing to wake up to. Hope you are doing okay.

      Linnea

  4. So Linnea…I too admire Guillermo’s spirit! I must admit I’ve been sulking due to my scan 2 wks. ago and a ground glass nodule on my left lobe…my resection was on my right lobe. My oncologist did tell me that I would not have another scan for one year…..Then, my sister in laws friend’s husband is having a biopsy today in NJ. They suspect lung cancer. I told my sister in law to give her my number and I spoke with her for a while early last evening. I told her about all the people I’ve met who’ve been living with stage IV lung cancer for many years; I told her about the treatment options; I told her about staging and I thought of you and my friend Jing (my chemo buddy). This thing cancer has touched so may lives…..I’ve had a chance to meet so many wonderful people during this journey. You are one of those people!

    • Linnea, Guillermo is an excellent role model in many ways (and definitely the life of this Party more often than not). I’m sorry about the scan–I loathe the words ground glass now. Are you really not having another scan for a year? I’m not a huge fan of scans either, but I think I’d want one sooner than that.

      That was nice of you to reach out to someone. And there are so many (too many) wonderful people living with lung cancer (including the linneas).

      Love, Linnea

  5. Pat & Will Plattner

    ..and, like Nan’s doctor, yours will someday say the same! Onward towards spring, leaving cold and snow behind! Begone, miserable New Hampshire March, lifting spirits one day and then striking them down the next!! We hear a party is being planned…raising drinks once again in the bistro will surely do wonders! It always did the trick for us!!!
    Cheers!

    • The party did much to lift spirits (in fact, many spirits, wink wink, were lifted). Mary lay a row of carpets (red only in our imaginations) in the mud leading to the steps so that the guests would not dirty their party shoes. Such a hostess.

  6. Dear Linnea:
    For warm sunny days came to my Toronto, Canada.
    My appointment for CT scan was at 21.30 Wed 30, 20 minutes ride to PMH, winos and cancer patients in downtown streets.
    Lovely picture of you and Ginger. I guest there is a price to pay in our longest survival competition, imagine Ginger like you one feet taller 26 years ago, the reward shows now in her perfect picture hallow, yours is droopy or you must drop for 26 years one foot to fit.
    “Hope is a good thing, maybe the best of things, and no good thing ever dies..” also in Spanish we say “Yerba mala nunca muere” meaning “weeds never die”, used for people and bad things.
    Is sad and hard for the family, a Enrique a friend from Spain died in Toronto of stomach cancer 15 years ago, the family had a garden party with lots of food, drinks and music, I have good memories, but after that Mariluz his wife lost her sister Paloma to breast cancer and her son got skin cancer and now I understand that is difficult for her to see or talk to me.
    The Pacific in Mexico is blue and the people are happy even at the end. I witnessed a group of family, friends and marching band walking behind a Ford F150 near Ziuatanejo in somebody last trip to a happy cemetery, they celebrate the day of the death every year.
    Nobody needs a long last list, the last trip is free.
    Enjoy life every day.

    • Guillermo, you best be careful; that almost sounds like an invitation to visit. It is, alas, sunny but also cold and windy. Where there is not snow, there is mud. Tired of this!

      No last trips just yet, okay? Sunny days, blue water, and a cruise with Beryl and your daughters ahead.

      Love, Linnea

  7. Dear Guillermo, You gave me a laugh in spite of yourself, thinking of me one foot taller in years past. And it is true. Now I change into a little old lady. Though I have never been a blogger, this is a blog I should be on. Here I am today – reading of people I’ve never met and still I immediately care very much about, each one here or not. I hate bad surprises as much as the next one and though my own story may give hope, I yearn instead to pass around whatever luck I’ve been dealt. If only I could. Six years ago, however, I lost my sweet husband to bone cancer. I still feel his presence even though it is a changed presence. We are each continually changing in one way or another. Yet we take the next step when we can. I’m looking at a quote which has been next to my desk for at least 50 years: “I’ve been absolutely terrified every moment of my life and I’ve never let it keep me from doing a single thing that I wanted to do.” It’s close to the truth. I can only wish for you and everyone on this blog, and everyone each of you cares about, that life remains reasonable. That is my word of choice for people like us. And I can tell you one more thing: the next time Linnea and I are together, the picture will be taken when we are sitting down. 🙂 Big hugs from the little old lady in Boston.

  8. tiffiany hora

    you are truly and inspiration. your raw take on this cancer journey always leaves me speechless. i find myself often times reading your entries, not once but twice each. your a warrior in the truest sense.

    hugs
    tiff

    • Tiffany, it is always good to hear from you. I ‘follow’ you as well with your entries on facebook, and certainly consider you a warrior in kind. Thanks!

      Linnea

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s