Marguerite’s famous cupcakes
First, thank you all for the messages of support; whether is was a comment here, on facebook, or a private message, they are all so very appreciated.
What a week! I’ve not written sooner as there has simply been no time. In anticipation of an upcoming biopsy and perhaps the start of a new clinical trial, I had left my days rather open. Well, nature abhors a vacuum and once we got the good news, my calendar filled up fast. David had a business trip planned to France that had been put on hold, but it too rematerialized, and he has been out of the country for seven days now. There has been a good deal of general scrambling this week; on more than one occasion, I’ve driven Peter to school still dressed in my pajamas.
I may struggle to keep my own house in order, but at my home away from home, The Yawkey Center at MGH, calm prevails.
The level of care I receive is extraordinary. When I walk up to the desk in 7B, I am greeted warmly and by name (as are all the other patients). The trio of phlebotomists are cheerful and exceedingly competent and getting blood drawn is drama free. Generally I recognize a patient or two, and on this past Monday my friend Christian and I had some time to socialize before being called in for our respective appointments.
When first led to my private room, I am weighed, my temperature is taken and my oxygen saturation and blood pressure are measured. On Monday I was just making myself comfortable when Marguerite came in, bearing a dozen red velvet cupcakes. For ME.
I met Marguerite four years ago, on October 1st of 2008. It was the day that I was first dosed with PF-02341066; now known as Xalkori. Marguerite was the phase I Research Nurse and she quickly became my go to person for support. I jokingly called her Mother Superior; she was so obviously in charge and yet also entirely accessible. Recently she transferred from phase I to the thoracic unit, which means I will be seeing her much more frequently. I couldn’t be happier; I adore Marguerite. And the cupcakes? Just the icing on the cake.
When Alice (Dr. Shaw) came in, we went over the scans side by side with the images from six weeks prior. Clearly, the cancer covers exactly the same area as before. No better, no worse. However, to my eye there appeared to be areas of less consolidation in the current image. Alice cautiously concurred, although our observations are not supported by the radiologist’s support. Encouraged, I resolved to shoot for the moon and hope for more resolution on my next scan.
We then discussed the congestion in my lungs, which is again becoming more problematic (it seemed to clear up somewhat after the course of antibiotics for the UTI). It is a relief that my symptoms do not seem to correlate with progression of the cancer, but it is also a bit confusing. I wondered if it were possible that anatomical changes might a contributing factor and Alice said that it is certainly possible; scarring in my lungs could in fact lead to a decrease in function. We decided that daily use of a nebulizer might help.
As Alice listened to my chest, I showed her the middle toe on my left foot, which I had stubbed rather badly the day before. After she left, my scheduler Mike came in and I exchanged my dosing diary and old bottles of drug for new, before grabbing a quick lunch with Christian and then heading north to pick Peter up at school.
By the following morning, the appearance of my stubbed toe had changed dramatically; an angry throbbing red, I felt pretty certain it was becoming infected. Peter had an interview at Exeter that afternoon, and I was unable to get into my GP in the window of time I had before I needed to pick him up at school. So I called Alice. We agreed that I should go to urgent care after Peter’s appointment and that the attending physician would call her before prescribing an antibiotic. “But Alice”, I said, “I won’t be able to get there until at least six and it will be after hours for you.” Her response? “So?”
In short, I was diagnosed with mild cellulitis. Alice was called and an antibiotic prescribed. It was after dark when Peter and I got home and there, sitting on our doorstep, was a box containing a nebulizer. No prescription to fill, no discussions surrounding insurance, no arrangements to make. All the hard work had been done for me, and now all I had to do was plug it in.
Extraordinary.
life and breath: outliving lung cancer 
they are most definitely THE BEST at MGH! I am throwing cautious optimism to the wind & going for full blown optimism here. Can’t help myself, you are by far one of my most favorite people. I hope your toe is better, that sounds painful. It’s amazing how little things (like toes) can be in so much pain. Take best of care, although it sounds like you have your family & MGH family doing that for you 🙂
Lorraine, I like your attitude (always have). This is not the time to let our free spirits get tethered–so full on optimism it is. And yes, that damn toe seems to have more than it’s fair share of nerves (and cheek too–going and getting infected!!).
love you,
Linnea
Ohhhhh… I miss Marguerite’s cupcake I had with you for breakfast at your home. I miss Marguerite, too!! She was the best! Please say hello to her for me next time you see her.
You are definitely one of the luckiest people who are cared for by the world-class caring professionals. And you deserve it!!!
Yuki!! I forgot you had a cupcake for breakfast. Such a funny host I was–taking you to a so called Japanese restaurant and then feeding you cupcakes for breakfast!! I will pass on your sentiments (and compliments for her baking expertise) to Marguerite. We all miss you here and hope you are doing well.
love, Linnea
You have an amazing group of people looking after you – great to hear! Alice is awesome, an angel on Earth!
DK37–I do, and she is!!
Best,
Linnea
Linnea, this post was great to read. I found your blog through one of the health-care focused blogs I read as I’m always interested to learn more about the inner workings of the complex healthcare systems. There are many things that can — and do — go wrong in the care of patients, and so much of what I read involves the tangled web that doesn’t seem like it can be straightened out. It was so refreshing to hear of your team, and the way they solve problems (like sending you the nebulizer). Think of what a difference that makes in the reduction of your stress-level when you don’t have to worry about things that shouldn’t be a worry at all. (I’m not telling you anything you don’t already know.) The other thing that stands out for me is how obvious it is that your team is mutually benefiting from being with you through this journey. They recognize your inner beauty as much as we do. That cupcake looks really fabulous!
I was always curious as to how you found me 🙂 Healthcare is fascinating: I have experienced the worst (medicaid) and the best: the care I am now receiving is indeed top notch and (I fear) has spoiled me–my expectations are now very high indeed. I am only wish everyone had access to the same level of care.
There is also something to be said for relationship building. If we (as patients) make an effort to get to know our caregivers and to show our appreciation, it makes their job more rewarding as well.
Thanks again for your insights and kind words (and the cupcakes are simply the best ever–if I wasn’t afraid she’d leave me, I’d push Marguerite to open a bake shop!).
Linnea
Wise advice for patients, Linnea. Once we assume responsibility and accountability to understand more about what we face and how others can help us — it benefits us all. I am definitely learning a lot from you, and enjoying every moment of it. Thank you.
No lie, when I opened your blog and read this entry last night, I was horking down a red velvet cupcake. Universal symmetry. I hope your toe is not throbbing anymore!
J
Psychic twins Joan, separated sometime post birth. Toe is on the mend–
love, L
I’m interested to hear how the nebulizer works out. Please do let me know. I sound like rice krispies when I lay down at night! It does not appear to be cancer related either. Sleeping upright works slightly but it makes it hard to snuggle the loved one next to me.
Hope the forthcoming biopsy goes well for you.
Rice krispies? Sounds familiar. I have slept propped up before (and yes, it helps) but like you find it a tad formal (reminds me too much of the days post surgery when I had to sleep in the lazy girl). Sleeping on my right side is better, but I get bored with that as well. So–(I’ve been a slow starter on the nebulizing) I’ll let you know.
Linnea
So sorry to hear about the infection. I hope the toe is feeling better now.
That is one wonderful looking cupcake. I still haven’t gotten all my taste buds completely back. Coffee and sweets just keep alluding me.
My oncologist is sending me to a pulmonologist. I haven’t seen one yet and I am developing a cough. My last PET scan showed that my tumor had shrunk, so I hope that the cough isn’t something serious.
I will be praying about your biopsy.
Lynn, the cupcakes were as good or even better than they look. It is interesting what can happen to our taste buds (or sense of smell–crizotinib made mine more acute!). Not craving sweets is likely just as well though. As for that cough, the pulmonologist is a good plan–post surgery my cough was so bad I was afraid the cancer had returned. In fact, once you have lung cancer it is difficult to associate a cough with anything but cancer but obviously they don’t always correlate. Hope you get it straightened out.
Linnea
I actually miss the MGH team-Alice constantly blew me away with her phone calls and text messages on Sundays and weeknights…always available and always so connected. We felt so reassured by her availability and ready responses-no doubt in our minds that our entire family was getting the best care available. I am so relieved to know you’re holding steady. Keep on!
Pam, I am not surprised to hear that you miss them. It is such an emotional journey and so very intense at times; intimate, really. And yes, that accessibility is pretty mind blowing–I honestly don’t know how she does it.
And thank you for your continued good wishes.
Linnea
Linnea what is a nebulizer? This is something new for me. On reading your post I am again struck with how kind the cancer community is. Kindness is the quality I value the most in people – oh and the ability to bake red velvet cupcakes. Enjoy!
Beryl, it is a machine through which you breathe aerosolized albuterol and sodium chloride–it’s a pain in the ass (more on that later) but it really helps open up your lungs so that coughing is productive. Often used by asthmatics…
And yes, people are kind. And good. To my mind, most all people–but there is nothing like being in need of kindness to make you realize how readily available it truly is. Of course, a dozen cupcakes is uncommonly kind!!
love, Linnea
I have NSCLC with ROS1 mutation metastasized to the brain. Since I was diagnosed in August 2013, I’ve had lung surgery, 2 brain surgeries, 2 stereotactic radiations to the brain. I was on crizotinib for 10 months it worked great. Then crizotinib stopped working and I got 2 positive lymph nodes by my esophagus and 7 new brain tumors. I was then put on Zykadia (new approved targeted chemo pills supposedly 20 times stronger than crizotinib, it only worked for 2 months and now I’m going to start carboplantin with alimta this week.
I would love to be able to speak with Dr. Shaw since I am in Miami, Florida to see if she has any other suggestions for me. I am 46 years old and have a 10 year old daughter, I need to get better to be here for her. Anything you can do to get me in touch with Dr. Shaw would be so appreciated.
Thanks so much!
Stephanie