I have been so topsy turvy moving, that A. I’ve not written a blog for too long and B. that means I’ve likely forgotten at least half of what I meant to write about. Perhaps if I start with the most recent events and work backwards…
Most of our possessions are now at the new house. Keep in mind this has been strictly a do it yourself job. As a result my forearms are developing muscles I’d not known I had but my back is in sorry need of a massage. Much is yet in boxes and bags and we can’t find Pete’s treasured teddy bear or the last netflix we viewed.
Yesterday some guys came for the ‘opening’ of the pool. It basically entailed pulling off the cover, turning on the filter and throwing in some chemicals. Removing a winter’s worth of leaves, pine needles, dead worms and debris is left to us, so I just spent an hour swatting mosquitoes and fishing. We’ve got our work cut out for us.
I spent yesterday at the house on Blueberry Hill; packing up a few final items and doing some housekeeping. The robins under the deck have fledged. I also paid a visit to Mary and 
Raleigh’s and enjoyed a cold glass of well water and a delicious piece of homemade rhubarb pie. Mary took me out to her garden and showed me a beautiful little nest beneath the grape vines; one sky blue egg now abandoned.
This past weekend I attended a conference in Quincy, The Art of Living, Life Beyond Cancer, graciously put on by the Friends of Mel Foundation.
My friend and fellow lung cancer survivor, Diane Legg was there and it was super to have a chance to spend a day with her. I gained some useful knowledge and met a few people I’d really like to get to know better. And…I felt sort of out of place. My first clue should have been the title of the conference. The byline was A conference for people facing life after cancer treatment. That’s not me.
There was talk of life ‘beyond’ cancer and plenty of stories from people whose cancer was a harrowing but distant memory. I had that uncomfortable sensation of being the bad news at the good news party. And then I did something really ridiculous: I signed up for a zumba class. I love to dance, but my style is rather…interpretive (not scarves or anything; more like this). I am hopeless when it comes to following a lead, and can barely clap (my hands don’t meet squarely in the middle). However, I have an immense capacity for humiliation so was all for trying, but after a few minutes I just couldn’t catch my breath. I mean, what was I thinking?
When I got home to the ‘new house’ that night, I poured myself a glass of wine, drew a bath, and decided to take a jacuzzi. This is my first jacuzzi and I learned something. Evidently you need to make certain the level of the tub is well above the jets; which I neglected to do. When I turned the jacuzzi on, water began shooting out of the tub like a geyser. Frantic, I kept overshooting off and unintentionally turning it back on. Three times I did this and the tub was half empty and the bathroom soaked before I finally found the sweet spot. Oy vey.
On Friday Peter graduated from eighth grade. Brief little ceremony followed by a reception and dessert. Someone pointed out a big mess on the floor; it looked as if a child had strewn around a brownie (not inconceivable). Mysteriously, more and more of this ‘chocolate’ began to appear and at just about the same time I personally became aware of a sinking sensation. At that moment Peter picked up a large wedge shaped section of, not chocolate, but foam. Kinda looked like the heel of a shoe; which in fact it was. The soles of my sandals were completely disintegrating and (to quote from my favorite movie yet again, “that was me all over” (think Scarecrow in Wizard of Oz). The sandals were tossed in the trash and I left the celebration barefoot, apologetic for the mess, but amused.
On Wednesday David and I attended a production of Peter’s school play, which was a variation on Alice in Wonderland. Peter performed two roles admirably: the March Hare and Tweedle Dee. His classmates all did a fine job as well and the costumes were superb.
On Tuesday I traveled to Chelsea for a brain MRI. Karen, who has been tapping my veins for six years now, was the IV nurse on duty, and it was great to see her and get/give updates on our respective lives and children.
Afterwards I made a quick detour to MGH in Boston where I joined Leslie, her husband Rob and Rob’s sister Marnie. I met Leslie at the NLCP conference in Denver, and they had travelled from the west coast for a consult at MGH with Dr. Lecia Sequist. Rob also has ALK positive lung cancer, and is actively searching for the next best treatment post crizotinib.
Following his appointment, the four of us went out to lunch and chatted as if we’d been friends our entire lives. It’s been a surprising ‘side effect’ of lung cancer; the number of wonderful people I have come into contact with because of my diagnosis. We parted with plans to reunite at some point and just yesterday I got a wonderful package in the mail from my new friends: freshly roasted french beans from Peet’s Coffee. Two cups of joe down, and I think I’m up to speed.
life and breath: outliving lung cancer 
Good, good luck in your new place! You’ll never find another “Blueberry Hill” again (nor will we!), but we hope you are blest there, as you were on ‘The Hill’, with wonderful friends who bring joy, laughter (and wine) into your lives!
Pat and Will, Blueberry hill it t’aint. It is a beautiful home and an easy, easy location. And I think we’ll be making many field trips back to the hill for a bit of that laughter, joy (and wine). Love, Linnea
Hi Linnea….I enjoyed reading your blog (again)….I was interested in the cancer conference you went to as I am local (Gloucester) and would have liked to attend. How do I find out about things like this?? I am going to a conference at Omega institute (Rhinebeck, NY) in September on “Living with Cancer” with 6 different speakers including Siddartha Mukherjee (who wrote “Emperor of All Maladies: A Biography of Cancer” …and who just won the Nobel prize). also Kris Carr (“Crazy Sexy Cancer”) will also be there as will Lillian Roth – a lung cancer survivor. Are you going??
Like you, I am not a cancer survivor (since I also have Stage 4 lung cancer), but I do think we learn to live with our cancer and make the most of each day….as I can tell you are! Bravo for you for signing up for zumba; I bet you’ll love it. I dance whenever I can (zydeco); it brings me so much joy and certainly makes me forget about my disease.
At my blog (“Dancing through Cancer”) I list 20 reasons why I love to go dancing!
Have a nice weekend..
sincerely, Laurie
Laurie, I have already corresponded with you via email, but I don’t like to leave a comment ‘unresponded’. I’m glad you connected with me, and I will keep up with your blog as well…best,
Linnea
Linnea,
As soon as I saw the title of that conference, my heart was in my throat. There is a similar conference at SCAA this month – I went in 2 years ago in that brief netherworld of no evidence of disease. Now, not so interested. I’m not sure why they have to word them so exclusively – targeting those that move beyond cancerland.
I’ve been wanting to write to the Armstrong Foundation regarding this as well. I participated in the Exercise and Thrive program a week out of radiation and went to every meeting faithfully and got so much benefit from it. Now, to qualify, you need to be 90 days out of treatment. That will leave a lot of Stage IV or recurrence patients out.
Did you happen to read the piece in the NY Times on living with AIDS last Sunday? I was torn – that community has accomplished so much in 30 years – remarkable. But what happened with cancer, especially with lung cancer? And it isn’t even transmittable? Maybe that was the key? Anyway, we will continue to make noise, draw attention to the deficit in funding, and praise the folks that are working on early detection, treatment, and a cure. Or preventing this in the first place! (Thanks for giving me anther place to think out loud.)
Laurie – now that sounds like a great conference! But I think cancer survivorship starts the day you are diagnosed. Just some are living with and some have a life after.
Stephanie, I wasted a fair amount of time on the web this morning trying to pin down some stats on how many cancer patients are in treatment versus remission or ‘cancer free’. It is all so black and white and quite arbitrary.
I have heard stories about women with metastatic breast cancer being ostracized at support groups–because it is ‘frightening’ to those who are newly diagnosed. You know what, we can’t whitewash the reality of this disease–it IS frightening and those with advanced disease should never be excluded. I mean (and I don’t pull out this sadly overused epitaph((?–goes with my dark mood–can’t remember now what word I meant to use)) often, WTF?).
So yeah, keep making noise. I am tired of feeling marginalized and I think I feel a blog coming on about that very subject…
And yes, The Omega Institute conference sounds great. I looked into it–and I don’t think I can pull it off financially at the moment, but those who can, should consider going.
LInnea
once again – too bad we don’t have breast cancer – scholarships are available for those!
You’re kidding, right?
I just checked–you’re not kidding ;(
I’m going to try to forget… that I am not a cancer survivor maybe a cancer drifter.
I was unable to contact you with 9 days in palliative care with scenic views of Ontario lake from my bed.
I was out of breath and suspected fluid around my lungs, scans do not show fluid but yes a deterioration of the lungs requiring oxygen treatment. My oncologist has nothing left to try, suggested Ifatanib but is like Tarceva and not recommended so back at home with an oxygen condenser and regular visits from palliative nurses and 24 hours on call doctors cancer specialists.
Is nice to be at home, I don’t have an igloo with swimming pool but is home sweet home with proper meals for my poor appetite.
I made a friend in the hospital and he left after 2 months stay living me an orchid plant, the bloom is going to live longer that him diagnosed at 61 with lung cancer and now at 63 on oxygen and expected to live 3 months but counting on God for an extension.
Most impress with your zumba class, latin-american music with martial arts and aerobics? and you the creator of the jacuzzi step.
Have a big big hug, enjoy the summer.
Ah, Guillermo. What are we to do? We’re supposed to live forever, right? I hate that there is ‘nothing left to do’, when in truth, there is so much undone. Would that oxygen itself was medicine enough.
Write when you are up to it; I didn’t ‘hear’ you trying to get in touch with me; too much background noise. Zumba class was a wash for me. I get points for balls (calzones?) only. Tomorrow I travel to Boston to find out whether or not I have anything extra on my mind (brain MRI results). Dark humor intended. I don’t know what else to say…except that I am sad about your medical report. But happy to be your friend, and ever hopeful. Goodnight.
Linnea
Live on credit with so much not done, living in the wrong time after we got tobacco from native indians, were ever just enjoy what we got, what we have.
I am not worry about your brain MRI, your brain is full of life and great ideas.
Super garden day for me.
Thank you my long distance friend.
Guillermo