2nd Chemo Treatment - Done!

Trip Start Apr 22, 2014
1
6
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Trip End Apr 22, 2015


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Flag of United States  , Massachusetts
Wednesday, July 30, 2014

Here's my update:
I am becoming a Boston regular. I even bought a commuter pack of bus tickets at the Dartmouth Coach, our bus between Lebanon, NH and Boston.

Because I developed a pretty significant rash 6 days after the first chemo infusion, I was scheduled for allergy skin testing last week at the Brigham Allergy clinic. I was exposed to a histamine (positive control) saline(negative control), and the two chemo drugs I need - carboplatin and taxol. There were three carboplatin & taxol skin tests. On two of the 15 minute readings, I had positive bump reactions but without the itching and red flare I felt with the histamine. The taxol bumps subsided overnight. The carboplatin bump got angrier.

In the morning I called my allergist and sent photos. Phone cameras and emails can be so helpful. As I predicted and consistent with the delayed reaction, the rash at 6 days, I had a delayed reaction. We know it was the carboplatin.

Once again, I am so fortunate to be a patient at The Dana Farber-Brigham & Womens Cancer Center (DF-BWCC). Dr Maria Castells is a world expert and pioneered an allergy desensitization procedure for safely receiving medicine one needs when there is a likelihood of an allergic reaction. Not many places in the USA have the capability to do this. I don’t know what happens at hospitals that don’t have this expertise. Perhaps the drug protocol for the patient is changed. But we know that I need the carboplatin to kill the type of cancer I have. Thank you Dr. Castells for making it possible for me to get the best first line therapy that I need!

The procedure is highly specialized. The full prescribed dose of the drug required is titrated and given in low & slowly increasing doses over a long period of time, to prevent the IgE antibodies that stimulate an allergic reaction from acting against the offending drug. Translated, today’s chemo infusion, and the ones to follow will each take about 10 hours. That does not include time before and after, getting labs and waiting as the drug is prepared, and completing the administrative tasks. It’s a long day, but as the patient, so far, it’s an easy day. I’m sitting in a reclining chair that has seat heater and massage button. I have my own nurse. Debbie is taking careful care of me. She also brings me goodies like food and tea.

The outpatient infusion suite has curtains between the 6 patient areas I can see. While I have a bright and private area with windows and a view, it’s good that I came by myself today as I would chatter with family and friends and likely disturb the other patients. This is a good opportunity for me to limit stimulation and have a quiet restful day. Mark is heading down to stay in the hotel with me, just in case I get stomach sick.  When I think I can manage the car trip home, we’ll leave then.

I am very grateful to all of the physicians and staff at Dana Farber. I am in the BEST place for treatment for my specific cancer and for my individual needs!

Boston Upbeat Summer Update
I stayed at my friend’s house in Coolidge Corner again for last week’s allergy appointments. I fully explored and tasted Coolidge Corner. It’s a wonderful walkable neighborhood. I’m a picky eater (vegetarian & fish) and there is no shortage of restaurants, fast food, & yogurt shops that please me. Trader Joes is right there and there is a Whole Foods at the St Mary’s T stop about 5 or 6 blocks back towards town.

My hair began to fall out as was predicted. I have a couple of comfortable fabric hats, & of course, plenty of baseball caps. For the fabric hats, I had an artistic idea of accessorizing them with costume jewelry. I had so much fun. I went down to 20th Century, a great shop with vintage reasonably priced costume jewelry, and found a pin to use as a “hat pin,” and a couple of beads and pearl strands to wrap onto the hat. Jane (who works there) had a good eye and I had fun! 20th Century is on Charles Street on the same side as Starbucks. Check out the photos and visit them next time you are in the neighborhood.

When I left I went to Supercuts around the corner on Cambridge Street. I thought it time to get my head shaved. Adriana preferred to give me a really short cut and we hoped it would last for a few days. It was really cute and I can look forward to when it grows back and is short in “Tillie model” style.

I had the short haircut for 24 hours. It was time for a shave. When my nephew Houman (& Ellen) lived here, Houman raved about the Lebanon Barber Shop. He loved the traditional “no appointment” format where customers come in and sit and chat about town with each other until their turn. He had told me that Micah, the owner is such a nice guy. And that he has never had a better haircut from anyone. So on Wednesday morning I went to the Lebanon Barber Shop and sat down to wait my turn. Micah gently shaved my head. We snapped the selfies I wanted with my Iphone. And when I went to pay for my haircut, Micah would not let me pay. He is a class act. Please patronize him and spread the word.

I have had good energy as long as I don’t do too much and get myself really tired. So far, I’m not too good at resting yet. That’s still a goal. But I’m doing a really good job so far of fitting my treatment into my life rather than making the cancer my life. This week, I went kayaking at Eastman Pond with Jeri C., Annie S. and I went to the Hello Cafe at Cedar Circle Farm, walked down to the river and then picked organic blueberries for us to eat this winter! I went to 2 regular 1.5 hour AHA yoga classes backing off when need be. And Mark and I went to a movie at the college and out to dinner too.

On Monday, I returned to Boston for an appointment and for the Chemo infusion today. Yesterday I walked a lot and got plenty of exercise. Adele and I went to 16 Handles for yogurt and awesome toppings. And I stopped at Nordstrom’s Rack to pick up a summer sweater I needed. Today I am a couch potato just sitting for 10+ hours. Just think if I were flying to Bangkok, I would be almost 1/2 way there already.:)

One thing has changed. My blood counts while high enough to have chemo today, were low and nearing the level that would have prevented treatment. After today’s infusion they will likely be very low. Translated, this means that I am susceptible to colds and illness and if I get sick, I can be sick for a long while. My body no longer heals like it normally does. From now on, I will need to avoid crowds, handshakes and well meaning hugs & kisses. Please don’t come to see me if you think you might be getting sick, or if you have a cold. You can all help with my wellness in this way.

Mark and I left the hospital well after 7:00 PM. I was able to sit with him at “Legal” and eat a baked potato. After dinner, I showed Mark the roses in the Boston public garden and we saw a little of the Shakespeare in the Park staying a safe distance from the crowds.

We came home the next morning. And after the trip, oh was I tired. I spent the entire afternoon sleeping.

Thank you all for your thoughtful cards emails and phone calls. It has made me feel very loved and I appreciate each of them and each of you!

Love,
Nancie

PS: I’ll post another update when I have something to share. Sometimes I post without sending an email alert. If you missed a post and would like to see it, just scroll down below the photo thumbnails and you can easily read the past entries.


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Comments

Lynn on

So proud of your attitude and strength!

Lynn on

Love the picture of you and Mark too!

Lise-Lott on

Good luck Nancie, you look strong and I love the photos you have on your blog!

Stefi on

I like the part about the heated seat with massage!!!! You are on my mind a lot! Xoxoxoxoxoxox

Linda on

Be a good patient, don't overdo and keep up the good work!!

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