As you may remember, I was given the past month "off" from treatment. It turns out, I can accomplish quite a lot when I'm not spending so much time in Boston. Since my last post four weeks ago, I: spent some time with Tom exploring Rockport, Mass; hosted some fantastic friends for several days which included walking around Boston, dinner in the North End, kayaking down our river, wine tasting at Nashoba, and a homemade New England Clam Boil; socialized with and met more people in our neighborhood; visited several yard sales; helped prepare Tom's grandparents to move; wrote a new post for Dana-Farber's blog and was invited to participate in their Radio-Telethon at the end of the summer; had one of my paintings accepted to the Massachusetts Art Educators Association juried art show in Boston; celebrated an amazing colleague's retirement; people-watched and pompously flaunted my art knowledge at MFA's First Friday; nostalgically enjoyed Dave Matthews Band in concert; began cooking our own meals again by buying something I've never had from the produce section every week; started an intense (for me) work out routine, including taking the dog on longer and longer walks; visited school several times and figured out how to return to teach next year; "bought" a "new" car; planted a flower garden; crafted a new cocktail after grueling but necessary research; have rapidly regained strength, stamina, and hair (I have no need for a hat these days, my eyebrows are appropriately fuzzy, and flirtatiously batting my eyelashes no longer looks like I'm having a muscle spasm in my face); and... drumroll please... finally booked a Caribbean cruise.
I've always been such a slacker.
It was only a few days ago that I realized I hadn't written a blog post during all that time. With the exception of writing the DF blog post, I honestly hadn't thought much about cancer during the past few weeks, so I didn't have anything else to write about. When I told Tom this, he agreed, saying he hadn't really thought about it either, and it made him feel like we live a double life. No, it's not like in the movies; we're not really undercover government agents posing as a mild-mannered scientist and quirky art teacher. We have our life with cancer that is rife with stress, physical and emotional pain, problem-solving, and overall seriousness, and then we have the rest of our vibrant, fascinating, creative, loving, and happy life that we absolutely adore. These past four weeks, we were able to cast off the anxiety for a little while and truly focus on all of the good stuff. It was glorious.
Like all great vacations, however, we had to return to the real world this week. My most recent scans showed the surgery on my left lung back in April was successful, and my lung has healed very well. It also showed that the spots in my right lung have grown, which we expected since I wasn't actively doing anything to reduce growth. While they still have no noticeable effect on me, my thoracic surgeon Dr. Colson has suggested that the smaller they are, the easier it will be for her to extract them with as much tissue in tact as possible, therefore retaining maximum lung function. At the same time, Dr. B has prescribed Pazopanib, a recently approved chemo pill that might halt the growth of the spots, or even shrink them, but tends to do so only for a limited time, and only for about half of people who use it. And while the side effects aren't as intense as my previous infusion experiences, there are still side effects (including maybe turning my hair white). Meanwhile, it's the summer, and since we didn't get the chance to do much traveling or fun stuff last summer, Tom and I are determined to do more this year. As a result, we left our appointments this week with the number one big question we face every time we go to Dana-Farber: how do we make a logical, realistic, informed decision for treatment, while keeping our vibrant, fascinating, creative, loving, and happy life in tact?
Thus, our double lives collide. We're at the point in the movie when someone from "normal" life confronts the heroes with the reality of their deception. Only for us, this doesn't happen just one time. It will happen over and over again, with every course of treatment, with every vacation we plan, with every discussion about going back to work, and with every decision we have to make. Yes, it's tiring; it's exhausting, actually. I don't like saying "I don't know" or "we'll see" or "maybe" when asked whether we can participate with this activity, or go to that event. As much as we say we don't let the disease take over our lives, everything we do and every decision we make has to go through the cancer filter. That's just the way it is, and it will always be that way.
Writing it out like that makes me sound rather pessimistic, but I like to think of it as realistic. As my psychologist said to me, I understand the complexity of my situation; there isn't a black and white answer, so weighing the treatment options against each other and balancing them with the rest of my life is not exactly simple. And whatever I decide to do isn't always going to be what someone else might decide to do, so getting feedback from others can actually make a decision more complicated rather than less. In the movies, the hero always says "I didn't tell you about my double life for your own protection" and I think I understand why: they don't want their family and friends to experience their struggle.
Ultimately, though, we do have to address the double-life collision. So, we requested that I begin Pazopanib in a couple weeks, and will schedule surgery in early August. This way, we can travel and enjoy the summer through July, and I will have recovered from surgery by the time school starts at the end of August. Are there some risks involved in putting off surgery? Sure. But to be honest, there's risk driving a car. There's risk flying in an airplane. There's risk cruising on an 90,000 ton ship with 2,100 people for seven days. But we're going to do all those things this weekend anyway. Whether you live a single or double or triple life (which would take serious dedication), there's going to be risk involved. So, we're going to be a little risky and have a kick-ass time doing it, rather than being disappointed that we have to put off our vacations yet again. Don't worry, cancer, I'll be comin' for you later. I just have a little Caribbean SNUBA-ing to do first.
(And here are some pictures of some of the things I accomplished in the first paragraph.)
I've always been such a slacker.
It was only a few days ago that I realized I hadn't written a blog post during all that time. With the exception of writing the DF blog post, I honestly hadn't thought much about cancer during the past few weeks, so I didn't have anything else to write about. When I told Tom this, he agreed, saying he hadn't really thought about it either, and it made him feel like we live a double life. No, it's not like in the movies; we're not really undercover government agents posing as a mild-mannered scientist and quirky art teacher. We have our life with cancer that is rife with stress, physical and emotional pain, problem-solving, and overall seriousness, and then we have the rest of our vibrant, fascinating, creative, loving, and happy life that we absolutely adore. These past four weeks, we were able to cast off the anxiety for a little while and truly focus on all of the good stuff. It was glorious.
Like all great vacations, however, we had to return to the real world this week. My most recent scans showed the surgery on my left lung back in April was successful, and my lung has healed very well. It also showed that the spots in my right lung have grown, which we expected since I wasn't actively doing anything to reduce growth. While they still have no noticeable effect on me, my thoracic surgeon Dr. Colson has suggested that the smaller they are, the easier it will be for her to extract them with as much tissue in tact as possible, therefore retaining maximum lung function. At the same time, Dr. B has prescribed Pazopanib, a recently approved chemo pill that might halt the growth of the spots, or even shrink them, but tends to do so only for a limited time, and only for about half of people who use it. And while the side effects aren't as intense as my previous infusion experiences, there are still side effects (including maybe turning my hair white). Meanwhile, it's the summer, and since we didn't get the chance to do much traveling or fun stuff last summer, Tom and I are determined to do more this year. As a result, we left our appointments this week with the number one big question we face every time we go to Dana-Farber: how do we make a logical, realistic, informed decision for treatment, while keeping our vibrant, fascinating, creative, loving, and happy life in tact?
Thus, our double lives collide. We're at the point in the movie when someone from "normal" life confronts the heroes with the reality of their deception. Only for us, this doesn't happen just one time. It will happen over and over again, with every course of treatment, with every vacation we plan, with every discussion about going back to work, and with every decision we have to make. Yes, it's tiring; it's exhausting, actually. I don't like saying "I don't know" or "we'll see" or "maybe" when asked whether we can participate with this activity, or go to that event. As much as we say we don't let the disease take over our lives, everything we do and every decision we make has to go through the cancer filter. That's just the way it is, and it will always be that way.
Writing it out like that makes me sound rather pessimistic, but I like to think of it as realistic. As my psychologist said to me, I understand the complexity of my situation; there isn't a black and white answer, so weighing the treatment options against each other and balancing them with the rest of my life is not exactly simple. And whatever I decide to do isn't always going to be what someone else might decide to do, so getting feedback from others can actually make a decision more complicated rather than less. In the movies, the hero always says "I didn't tell you about my double life for your own protection" and I think I understand why: they don't want their family and friends to experience their struggle.
Ultimately, though, we do have to address the double-life collision. So, we requested that I begin Pazopanib in a couple weeks, and will schedule surgery in early August. This way, we can travel and enjoy the summer through July, and I will have recovered from surgery by the time school starts at the end of August. Are there some risks involved in putting off surgery? Sure. But to be honest, there's risk driving a car. There's risk flying in an airplane. There's risk cruising on an 90,000 ton ship with 2,100 people for seven days. But we're going to do all those things this weekend anyway. Whether you live a single or double or triple life (which would take serious dedication), there's going to be risk involved. So, we're going to be a little risky and have a kick-ass time doing it, rather than being disappointed that we have to put off our vacations yet again. Don't worry, cancer, I'll be comin' for you later. I just have a little Caribbean SNUBA-ing to do first.
(And here are some pictures of some of the things I accomplished in the first paragraph.)
The flower gardens around our front steps
Halibut Point State Park, Rockport
New England Clam Boil with Tom, BP & Marta
Boston
Nashoba Valley Winery in Bolton
I love your writing. Hope you two have a wonderful time on your trip!
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