This is the frost on the inside of a window in my ‘studio’ Monday morning. It was a serious seventeen degrees below zero when we woke up. Very cold. The sort of cold that is beyond reasonable. Later that morning I drove to the grocery store and saw a bird I didn’t recognize sitting by the side of the road. It didn’t budge as I passed, and curious as well as concerned that it might be injured, I turned my car around to go investigate. The imperturbable bird turned out to be a blue jay, shivering in a patch of sunshine with its feathers so puffed up it resembled a baby penguin.
Our friends Brian and Jen were visiting from Baltimore, and they braved the frigid cold to go skiing. As they departed, my inner mother handed them each a face mask with strict instructions to wear it.
Jen and Brian snowshoeing on Sunday
Our guests returned from the ski area earlier than expected. Shortly after lunch Jen had wiped out and hurt her knee badly enough to score a ride down the slope in the ski patrol sled. I shooed them to the couch and had Pete build a fire while I got to work on dinner. The night before, Brian and Jen had cooked a spectacular meal, and David did the honors the evening they arrived. My turn.
By the time I said goodbye to them prior to bed on Monday evening, my cheeks hurt from all the laughter (and my head from all the wine). Two days and three nights of most excellent revelry.
Tuesday morning I was awake by 4 a.m. and left the house by 5:45 for a trip to Boston and the hospital for several appointments. It was zero degrees outside and snowing lightly, and driving proved a bit challenging. By the time I’d gone perhaps fifteen miles, I saw three different accidents and a variety of emergency vehicles. One car lay on its side in the deep snow by the side of the road, the headlights shining into the woods.
It was a no good very bad day to drive, and it took me a (personal) record 4 hours and 15 minutes to get to MGH. By that time I was an hour and a half late for my early morning appointment with the ENT. I was hopeful they could fit me in anyway, and sat there (futilely) until it was time for my blood draws in Yawkey.
Dr. Shaw was running late as well, and as lunch time approached, I took one of everything a pink-shirted volunteer was offering on her cart: tiny luke warm cans of V-8 and apple juice, and packages of crackers, bonny doons, and peanuts. Yum.
Eventually I was ushered into the back and Alice (Dr. Shaw) joined me a few minutes later. I’d been expecting a lousy scan report as I was still quite congested when I’d had my CT scan the week before (three weeks recovery time for the flu). However, it was again more or less stable; one lesion a millimeter larger, another two millimeters smaller. I broached the subject of less frequent scans, and to my surprise, it was now an option for those who lived great distances. After the drive that morning, I felt that I qualified, and unless there are symptomatic indications to the contrary, I will have my next scan in four months. Yippee!
The next stop was infusion, where to my great delight, they had booked me a bed and an acupuncture session with Irene. After dosing and picking up my crizotinib, I called the ENT office and the receptionist said to come on over.
This is where my day started to feel ugly. I was exhausted from the long drive and early departure, and it was already after two. What the receptionist neglected to tell me is that they would fit me in after all the other patients had been seen. I sat in the waiting room for three hours before I saw the doctor. I wish I could say that I whipped out my lap top and made good use of all the down time. But no. First of all, due to the lack of communication, I kept thinking that I’d be next. Secondly, I’d become rather undone.
I am really quite flexible and generally able to find some source of comfort in any given situation. I am, however, very impatient. In real life, whatever I am doing, I do quickly. I don’t like to go slow(ly). It is the character trait with which I struggle the most. However, I can generally find a way around my impatience; some sort of diversion. Even that morning, stuck in traffic, I had entertained myself by glancing out my windows and identifying things I would have liked to photograph.
But sitting in that office, with no timeframe, I simply felt trapped and lacking in control. And when feeling that way, I tend to just shut down.
Silly, really. And something I hope to overcome. But not yesterday. Good news and all, it was one bloody long day and I didn’t get back home until more than fourteen hours after I’d left.
But today, I’m all better again. Of course.
life and breath: outliving lung cancer 
I can’t believe you did that all on your own! My sweetheart takes me to the clinic for a few hours of infusion. Maybe he just likes sneaking orange juice when he gets me a pudding cup from the fridge. No way I would want to drive home after your day. An acupuncture session courtesy of your trial? That is pretty sweet.
Funny, I had a drag my butt Saturday and then on Sunday I was making tortillas and cooking dinner. Good luck for those trying to keep up with us!
Stephanie, I love that you say sweetheart. The only other person I know who uses that lovely (and rather old-fashioned) term, is Irene, the acupuncturist and one of my favorite people ever.
When I first started on trial, my daughter always accompanied me, and during infusion, David was there. Aside from the great distance and the long days, there is no reason I can’t go alone now.
I imagine you’ve earned some drag your butt time while in treatment. And you know how to make tortillas? Really? Should have put that on my list of resolutions. A fresh tortilla with some butter is just heavenly. And yeah, just imagine if we didn’t have to contend with cancer. It’d be some crazy, no?
Linnea
Missing you…hope you are too busy being well.
Round two has been a bit rougher so far. And there were no snacks in clinic! Man, the fatigue. Succumbed to anti-nausea this morning – why 3 days later?
I just didn’t worry too much and the plastic wrap/roller pin version of tortillas from instant masa were quite fine. Especially warm with butter.
Stephanie, I am pleased that you missed me 🙂 but not too worry–just way, way busy on my end. I am also sorry you are going through this shit again. However, all things considered, your attitude is beyond amazing. Keep on keeping on.
Linnea
Linnea,
I have been reading your blog for a while–love your writing. i would love to communicate with you. Can you send me your e-mail? I am a lung cancer awarness advocate and author and I would like to exchange information with you.
Cynthia, I sent you an email. Thanks!
Linnea
Hey, I am new and catching uo to the history here.I am a Bac upper left lobectomy suvivior. 18 months….non smoker of cousre ! that sucks, anyway nice to meet you..be strong and of good courage….you are not alone ,my thoughts and prayers, wishes, hope is with you . ( I will also light a candle to cover all grounds -hahahahah)
Miss daisy/Heather
Heather, 18 months and counting! And thanks for the candle 🙂
Linnea
Hello Linnea,
Now you know what means “as a patient one has to be patient”.
Your stable scan is great news.
I had to check what a blue jay looks like, as we don’t have them here. It has gorgeous colors. I am learning new words from your blog, such as “imperturbable”. Do you think the bird was frozen or just calm?
Enjoy the winter days!
Paula
Paula, not frozen; I checked again later. Just using the sun and his feathers like a down jacket! Love, Linnea
OOo what a LONG day! I recognize your trait not being slow…Ha ha i always have to do things quickly. Not always a good trait while having cancer;-) But it keeps us active and a live too!
Nice to read you stay so stable..( You may be quick, but the cancer is slow..)
Love caroline
Caroline, let’s stay quick. It is not until I lie down and don’t get up that I will give up–nor will you! Happy February!
Loive, Linnea (typo–and my not translate, but my love is a hybrid of love and live. That also becomes us)
Linnea, reading your blog has taken me right back to Yawkey. Wow… I love the photo of you here. I was wondering how long it takes you to get to Boston, realizing that you are a ways out. It was such a pleasure to meet you in DC, I think of this quote: “Each friend represents a world in us, a world possibly not born until they arrive, and it is only by this meeting that a new world is born.”
-Anais Nin
Lorraine, Sy’s documentary and photos were so very reminiscent of my own experiences (those locales). A good new friend you are. Love, Linnea
Dear Linnea:
Again I am happy with your stable report, also timing well the scans you can avoid traveling in winter time.
Here after expecting a blizzard snowpocalipse and closing schools we went for CT scan results on Wednesday afternoon in half hour with few cars on the route and few patients in the hospital, before Beryl returned from parking the car I finished my blood work.
The lucky number for chinese is 88 and I started the New Year with a 1% refund in my credit card for $88!
Alimta seems to be working after two infusions, the advice is to continue on Feb 8th.
CT scan impression : “Increased ill-defined opacity of the right lower lobe has rather infectious/inflammatory appearance, could also relate to prior radiation.
The right-sided pleural effusion is slightly smaller.
Multiple bilateral lung metastases as well as the right perihilar mass appear stable.”.
My appetite is improving, regained 6 pounds from 170 to 176.
http://ca.news.yahoo.com/blogs/dailybrew/cbc-special-report-snow-toronto-foreshadowed-reality-snobigdeal-20110202-080052-795.html
How long have I had my cancer, Doctor?
http://www.cancernetwork.com/breast-cancer/content/article/10165/1779752
As an extension of Collins’ law, our graphs of local recurrence data suggest that the typical age of a cancer at diagnosis is approximately 5 to 6 years for breast cancer, and 3 to 4 years for lung cancer.
Linnea I believe that we are 9 years survivors.
( ) ( ) Guillermo
Guillermo, snowpocalipse deserves an entry in the urban dictionary. I’m glad you remain lucky and that Alimta seems to be working. Tell then I want more superlatives (of the positive kind) in your next scan report. Just because. Here’s to nine and then many more. Love and ( ) ( ) ( ) Linnea