My recovery began with a dichoctomy. Emotionally, I was elated that surgery had even been an option. Physically, I was a wreck. It had been more difficult and painful than I had anticipated. The 1/2 inch diameter tubes in my back drained into a suitcase shaped apparatus which gurgled at the side of my bed. One of the very first hurdles was forcing myself to cough in an effort to help clear my lungs (it hurt so much!). A nurse came in and quite roughly kneaded the muscles in my abdomen which was helpful (why they hurt, I couldn’t tell you). I have heard that some hospitals provide you with a teddy bear to hug when you cough which sounds like a good idea. I also struggled to blow the ball up the tube in the little spirometer–kind of like a circus trick but not as much fun.
The morning after my surgery, while I was yet quite groggy, my oncologist came in to introduce himself. I was unaware that it was my good fortune to be assigned to Dr. Tom Lynch, who had been testing for mutations in the epidermal growth factor receptor gene for some time. As a young, female, never smoker I fit the profile of someone with an EGFR mutation. However, when all the biopsy work came back, that would not be the case. What we did know was the following: I had a bronchioalveolar carcinoma (BAC), mucinous. My tumor was 5 cm in diameter. Margins were clean. Also present was centriacinar emphysema. All lymph nodes and bone were free of tumor. I was a stage IB.
My stay in the hospital extended to 9 days, as my lung partially collapsed again. My ipod provided some distraction, but I also spent a good deal of time perusing two books that were a great source of comfort for me. The author is Pema Chodron, and they are aptly titled Comfortable With Uncertainty and The Places That Scare You. In addition, I had the window seat, and there was a great view of the Charles River. I would watch the crew teams in their sculls, and marvel at how far from my world that degree of physical activity now seemed. For me, a lap around the thoracic wing with my IV cart in tow was a workout.
David was at my bedside daily, although it was more than an hour from our home and Peter’s needs had to be addressed as well. Pete had just turned nine the week before, and had taken the lack of a real birthday party in stride. A network of friends had been rather magically spiriting Peter to and from school and invited him for lots of sleepovers as well, but he still needed a parent around.
As difficult as this time was for myself, David, and our older children, it was harder for Peter. We had a very close bond and he was so frightened and anxious now. One of my strongest memories from my stay in the hospital was the first time David brought him to visit. Peter crawled onto my bed and kind of wrapped himself around my legs and made these small animal noises. My heart was breaking, but at the same time, it was going to be my love and dedication to my children that would pull me through.
The day I was released, we made a crucial stop on the way home at a store that sold Lazyboy recliners. Because of the extreme discomfort from the three incisions on my back, as well as my lack of ability to be on my side due to my fractured rib, we knew that sleeping would be difficult. A recliner seemed like the best option. There was going to be a two week wait for a chair, but David played the C card for the first time, and we were able to take a floor model home with us. It was quickly re-christened the Lazygirl, and became my home base for many weeks to come. I would make a nest of blankets at night, and imagine myself in a small boat that was taking me back to a safe place.
the small boat taking you to a safe place breaks my heart. i hope that these days it feels like you have found that safe place…
Nine days in hospital feels painful. Is good that your little boat is in a protected anchorage now, may be too close to trekking hills…
With the success treatment you can write memories for us and the grand kids.
In the spring of 2005 it was hard for me to relate to people with cancer, I didn’t know that was part of me. In the fall I got ready for operation in Jan 2006 with a vacation on the Mayan Riviera around beautiful Tulum ruins and beach. I read that people did better after summer operations so I refilled vitamin D with a super sun tan appreciated by nurses used to see old pale patients. I went for a half hour massage for $10, the strong mayan women told me to undress, I went down to shorts, she commanded everything off, sorry for me gave me a face cloth to cover my self. Was a very good massage.
I asked my surgeon for video-assisted thoracic surgery (VATS), but going under anaesthesia didn’t know ff the surgery was going to be cancelled because cancer on lymph nodes. When I walked up I was so happy with VATS lobectomy, 2″ scar almost invisible in the front, 5.5 cm tumour removed without cutting ribs.
I was told to hug a pillow to cough.
After 3 days I went home leaving behind patients operated before me. I was very lucky.
After examination of the lobe my stage was reclassified from 1 to 2 and I choose to improve my chances doing adjuvant chemo Cisplatin/Vinorelbine. I never read in the statistics that people surviving 4 or 5 years may be promoted to Stage IV…
Today I returned from hospital with boxes of Heparin needles for 3 months for leg clot thrombosis. Was told that after that will change to Warfarin pills.
Checking in internet found is a bad choice and we must research and push for the best treatments:
‘The percentage of serious complications (recurrent VTE and major bleeding) during Warfarin use was 44.5%, and the death rate was 6.5%, compared with 9% and 0%, respectively, during use of LMWHeparin”.
I didn’t realize how much we had in common at diagnosis. VATS sounds like a far more civilized procedure than what I had, mais c’est la vie. I love your story about the sunbath and the massage, both good preparations for what lay ahead. I too was surprised by my progression from stage I to IV–I somehow imagined it would be sequential and more gradual. I also did not realize that it doesn’t work the other way: after my great response to the trial drug I asked my oncologist if I was now going to be restaged, but I guess once a IV, always a IV. Maybe that’s for insurance purposes as well.
Anyway Guillermo, as always I enjoy your tandem recounting. And yes, I am in a safe harbor now. Linnea
Nine days = merde, not la vie en rose.
New stages are a secret here, oncologist believe in “out of sight, out of mind”, my translation is “blind and crazy”.
Sold my sailboat in the spring. Now tandem bloging is as good ; “There is nothing – absolutely nothing – half so much worth doing as simply messing about in boats.” (Kenneth Graham Wind in the willows).
Got a blood clot, Lucky again! Found The Anticoagulant Heparin: A Possible New
Cancer Treatment? confirmed by Dr West in http://cancergrace.org/
Completed Alimta chemo, Lucky again! now I can drink and enjoy wine.
From cheerful rubaiyat of omar khayyam, (poet, not wino) fitzgerald translation
And, as the Cock crew, those who stood before The Tavern shouted—“Open then the Door! “You know how little while we have to stay, “And, once departed, may return no more.”
Ah, fill the Cup:—what boots it to repeat How Time is slipping underneath our Feet: Unborn TO-MORROW, and dead YESTERDAY, Why fret about them if TO-DAY be sweet!
I don’t remember how or why I stumbled upon your blog; probably while researching options for my mom. She also has lung cancer, recently we found out that there are mets to the brain.
Your writing is beautiful and I love reading from your point of view about many of the things my mother has gone through. Even though my sister and I are grows she still has tried to protect us from much of her ordeal. We know all about the treatments but she doesn’t has never complained about pain, anger, etc. I can’t even imagine how it feels to be the patient but I do know that your words have helped me as a caregiver and I thank you.
Thank you Kim. The truth is, sometimes I can’t imagine what it would be like from the perspective of the caregiver. As a mother, I am just so relieved that it is me going through this and not one of my children and I would guess that your Mom feels the same way. I hope there is a reasonable treatment available to address her brain mets and I wish you all the best. Linnea