Just another crazy day yesterday. David is on an extended business trip this month, so I’m holding down the fort on my own. As I had to leave for Boston and my appointment at the crack of dawn, Peter spent the night at a classmate’s house. That meant Buddy and a cup of coffee were my only early morning worries.
The waiting room in oncology was a bit of a grim place yesterday. Lots of wheelchairs and a stretcher or two; hale and hearty was the exception. As I waited to check in a woman moved out of my way and explained that she was not in the line. “Oh, you’re lucky, I quipped”, and she agreed, that yes, coming here made her count her blessings.
At my meeting with Alice (Dr. Shaw), she reiterated that enough tissue had been retrieved for several studies. First and foremost, is seeing whether or not I have a new mutation. All of the information gathered from analyzing the biopsy will also be collected for a clinical trial that I signed consent forms for a month ago. It is basically a data bank, and is actually my fourth clinical trial to date. Only one of those, PF-02341066 or crizotinb, involved my active participation (and, ultimately, personal benefit). Two earlier trials required only some additional blood draws. I point this out simply to accentuate that there are actually lots of ways in which to contribute to clinical trials; some of them risk and hassle free.
After saying goodbye to Alice, I went up a floor to infusion. I was early and they were way over-booked, so I grabbed some lunch and then returned. I didn’t have to wait very long, and to my great pleasure, I was given a bed and a short acupressure and acupuncture session by Irene.
It was a few minutes before two by the time I had collected my paper bag of meds, and I needed to be at Peter’s bus stop in New Hampshire by 4:05. I would need the gods of traffic to watch over me.
Well, they did, and I even had ample time to pull in at the rest stop cum state liquor store on the border for two bottles of zinfandel.
Peter called me from school just before I passed the exit to Sant Bani, and so I made a detour and picked him up there instead. This meant we had ten extra minutes in which to zip home and walk the dog, before we had to drive to Moultonborough for Pete’s guitar lesson at 4:30. As soon as the lesson concluded, I headed to the polls (election day!) and then after (had to be) dinner out, we pulled into our driveway only a little past Buddy’s dinner hour.
Geez, what a day.
This morning should have been the start of a less hectic day, but half way down the hill we realized that Peter’s lunch was not in the car. Back for that and we rushed to the bus stop, only to discover that the bus had just gone by. Sigh. Buddy, who was along for the ride, was thrilled, because what should have been a twenty minute ride now ballooned to an hour and twenty minutes. I was having serious flashbacks to my days as a single mother some twenty plus years ago…
But home was some grotty apartment then, not this house at the top of a hill. And I definitely didn’t own a camera like the one I have now which I quickly grabbed before rushing out to capture some leaves before the hard frost melted away…
Sorry to hear about the frantic day, Linnea.
But, absolutely love the photos!
Thanks Tracy. Frantic days are no big deal in the whole scheme of things, right?
Glad to hear you’re successfully through that hurdle, and to see the beautiful photos…though don’t love that the frost has worked it’s black magic on my garden. I had some good news last week, that my tumor is responding well to the chemo, but with the good, the not-so, that they did not find any of the mutations in my cells that would allow for the use of the current targeted therapies. Hoping that soon we can actually meet and talk.
Marj–the fact that you are getting a response is excellent news. I know you were hoping for a mutation, but the truth is, it remains to be seen whether or not having one is a good thing. I certainly didn’t respond to traditional chemo, and I am glad that you are.
It has been a really busy time, but we will meet soon. I really look forward to it.
Linnea, I have been reading your blog for well over a year. My husband, Jim Martin, has been on the national front for his participation in the Pfizer clinical trial too. This journey has been a crazy one, and one I’m sure that will still have twists and turns in it. Your blog is inspiration to me in supporting him, as your strength helps me find strength too. The two of you should connect–he has a Pfizer video too! Here is the latest on his story with Crizotinib: http://blogs.forbes.com/robertlangreth/2010/10/28/pfizer-drug-powers-cancer-treatment-into-the-dna-age/?boxes=Homepagechannels
Rebecca, I read the story about your husband and glad he is doing so well: I would love to see his Pfizer movie at some point as well. Connecting would be great–I’m sure we have a lot to talk about. Thanks for reaching out to me.
Agree that frantic days are much, much better that quiet days forever.
Destiny, fate ? Talking with Grand mother, mother and son from Ecuador visiting brother with colon cancer in PMH. They are against operation, the young man says “I also have colon cancer, the doctor gave me 6 months to live, two and half years ago. In God we trust, is His choice”.
He looks good and strong
From the 16th floor in PMH, enjoy views of Toronto at night. The tower is illuminated in red forecasting sunny days ahead.
I have a double room for myself for a few days in Palliative care.
Lots of women to look after few patients, women are much better, more sensitive and they really like their jobs.
One nurse does the paper work, tells me that she enjoys her job, asks my name and age and says than I am good looking. Thanks she knows how to make feel good, she lives and returns with swaps for contagious diseases, swaps my nose, then my ears, then says “drop your drawers!”, not enjoyable for me.
An X-ray confirms CT report of fluids build-up.
A male doctor, exception here, prepares me for drainage, disinfection and Xylocaine local anaesthetic in lower back, showing a female nurse how to stab patients in the back were they can not see .
Draining starts and he asks me were I am from, “born in Buenos Aires, Argentina” he answers in Spanish “si, de verdad? yo soy Chileno” (yes, really? I am chilean).
He says to the nurse ” you like South American wines ” and to me ” are Argentinean wines better that the chilean?” I respond “In my position I have to say that chilean vines are the best”. We almost had a war with Chile for mountain lines in the border, the Pope made a final decision favouring Chile and Argentina went to war with England over the Falkland is”… My quiet day ended after they filled almost 3 litres of fluid!
Guillermo, well, at least you have a private room for the moment (which is HUGE in a hospital), a good view, and a doctor conversant in spanish. The rest doesn’t sound like too much fun, but will hopefully bring relief.
It is a good thing you filed a comment, as the members of your fan club were once again contacting me privately. Out of courtesy they would inquire as to my health but then quickly move on to their real concern; how is Guillermo–he hasn’t posted.
You are much loved my friend. I have been given the green light of support at home by my husband for a trip in early December, so brace yourself. I am coming.
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Hi Linnea –
I was amazed at your fortitude in dealing with such a full day. Thank you for sharing! You really inspired me. We referred to your post in our Navigating Cancer blog roundup. I’ve included the link if you want to take a look.
If you get a chance to send me a message, I would love to hear from you. You can reach me at email@example.com
I hope you’re having a nice day Linnea!