It's just a random Thursday in December. It's not an anniversary of anything joyous or tragic. Perhaps it's the joy that my kids brought to our activities this evening, or the successes at work today, or the excellent playlist I put together on Spotify, or the family I'm missing, but my heart is really full. And I felt like writing about it.
After work I took my student out for a beer to celebrate the submission of his first manuscript. It's a big accomplishment in a graduate student's career, and I wanted to mark it with a social outing. We were joined by our collaborators after we had all bashed some code in a 2-hour bioinformatics sesh. Everyone was feeling accomplished and merry.
Before the beers arrived, my colleague, S., started a conversation with me by saying, so, how's everything going? This is always a loaded question for me because I never know if the person is asking about normal things or cancer things. People often want to know about cancer things but don't know how to ask about them directly, so I have to infer from the way they ask if they're inquiring about my holiday shopping achievements or my PET scan results. You can imagine the difference: "How are things going?" in a light, skippy tone, vs. "How are things going?" with emphasis and gravity. I don't see S. very often, so it was hard to distinguish what type of "how's it going" she meant. I opted for a response of, "Really great, thanks! I have treatment tomorrow, but last year it fell on the day after Christmas so tomorrow's a pretty good deal...". I felt ridiculous and wished I had gone the route of discussing what Santa is bringing my kids. Fortunately she's great and saved my lousy conversationalist self by diverting the conversation elsewhere. I suppose the positive spin on this is that my cancer is a normal part of my upbeat existence, but I do feel badly for all of the innocent friends, family, and colleagues who fall under my cancer-accepting bus during normal conversations. Please know that it's something I'm working on.
This brought to mind the news that I had yet another clean PET scan in November, on the Monday after Thanksgiving. I've lost track now--is that three or four clean ones in a row? Perhaps five? It's a small mountain of clean PET scans. You should know that I do not take any of them for granted, although the result of each one is a bit surreal. In my mind I have stage 4 breast cancer, but the scans seem to be taunting, "no you don't". Then my treatments say, "yes, you do". Then the scans say, "no, you don't." This argument can go on for the next decade as far as I'm concerned. Whatevs.
Speaking of 10 years, my Medical Oncologist was on the radio a week or so ago because her research study made the popular press. She was the principal investigator on an analysis of data from women who had stage 4 breast cancer between 1988-2011. The part that I keep hearing on the news is that of these stage 4 patients, the 10-year survival rate for those who had surgery to remove their primary cancer was almost 10%. The survival rate of those who did not have surgery was only 2.9%. This news got me all excited because I of course chose to have surgery, so I have the potential to fall in with the 10%-ers. My decision to have surgery was a big deal because none of the medical professionals could advise me on whether or not to keep or remove the breast. All four surgical oncologists at the fancy hospital discussed my case at Tumor Board said that my case was a medical gray area, and so the decision was mine. It was clear to me and my gut feelings that the breast had to go, and these new data seem to validate my decision. 10%! That's a fantastic number. As I have sometimes complained about when it comes to experiencing a rare side effect, I've rarely fallen in with the majority in my activities, so this is one time I'll be elated to be a part of the minority. #bethe10%
All of these thoughts were in my mind tonight as I was running the sewing machine on Calvin's Christmas present in between dance breaks with my daughters. Azalea was choreographing an elaborate duet in the kitchen, sketching diagrams on the whiteboard for Eleanor and I to follow. I sewed while she drew the next position, then she'd call me in to run through the dance with Eleanor. Eleanor was my sewing buddy, pushing the pedal on the sewing machine at my instruction. We finished both the gift and the dance, leaving all of us feeling full of creativity and productivity in equal measure.
They are such treasures, my daughters. I am so grateful to be here to dance and sew with them.
Then Bruno Mars starting crooning over the bluetooth speaker, "You can count on me like 1, 2, 3, and I'll be there..." I started thinking about all of the people who have been "there" for me. I started to worry that I haven't been "there" for all of my loved ones in this year of recovery. Have I been too selfish? Have I spent enough time tending to the needs of others? I don't think so. So many people are in my heart to reach out to. Hopefully I can improve the balance as I continue to survive.
In the meantime, I have a few more nights with the sewing machine in my future as the Christmas holiday approaches, and hopefully the dance parties will continue in tandem. My heart is filled with gratitude for this life.
Thursday, December 17, 2015
Thursday, November 12, 2015
The Enchanted Valley
This is the third post describing my hiking adventure with my brother, Ryan, in the Olympic National Park last summer (June 2015). The first post described my first day in Seattle, and the second post described my first day of hiking toward the Enchanted Valley. The current post describes my second day in the backcountry, when we made it to the Enchanted Valley.
After a deep, unbroken sleep in the backcountry, we awoke a little after 7 am to the sun beginning to warm our tent. We each crawled out of Big Agnes from our own personal door, our feet sinking in to the cool gray sand. It didn't take us long to get busy doing some camp chores.
Ryan used the single camp stove to brew us some coffee. He has an adorable little percolator coffee contraption that is made out of some sort of metal that is entirely too heavy, but my brother isn't bothered by the extra weight in his pack. After the coffee was brewed, he put on a pot of steel-cut oatmeal, loaded up with plump organic raisins and a scoop of brown sugar.
While he tended to breakfast, I sat on a stone in the creek and pumped water through the filter. The sun warmed my back while the water rushed by my feet. As Ryan had shown me, I faced downstream so that I could pump the water from a small clear pool rather than the stirred-up rapids. We had vessels for carrying almost 10 liters of water, and we decided to fill them all up for our big day of exploring so that we wouldn't have to pump water again for awhile. It takes awhile to pump 10 liters of water. I still wasn't done when Ryan brought my coffee and oatmeal to the creek, so I asked him to take some photos of me pumping water, so that I could show my kids how it was done.
We left our tent and the majority of our supplies at Pyrites Creek, just carrying water and snacks for a day hike into the Enchanted Valley. It was about 3 miles from camp to the valley, and the forest looked much like it had yesterday but with more meadows. The meadows were remarkably dry and a bit brown from what had been one of the hottest and driest Junes on record. The trees, however, did not disappoint: tall, wide, old, and fragrant.
After a quick little hike we came upon the entrance to the Valley. It was marked by a tall wooden gate across the trail, unconnected to a fence or any further barrier. We opened the gate to pass, and dutifully closed it behind ourselves despite its unclear purpose. We crossed the creek on a huge log that had been carved into a bridge, with a handrail on only the left side. The other side of the log was completely open to the water tumbling over rocks at least a story below us. This was the most exciting creek crossing and my favorite one of the trip. The day was warming up considerably, and I was a bit hot from the hike, so it felt good to cool off in the moist air above the creek.
Around another bend or three we had views of the chalet in the valley that is on all of the photos and postcards.
Unfortunately, the Valley looked nothing like this on my Valley day. It was hotter than a dickens and dry as a bone. Most of the greens were browns, and all of the breathtaking waterfalls were dried up save for a tiny trickle of white over there, maybe, or it could have been a long white rock. The good news is that the hot and dry version of the Enchanted Valley was still beautiful in its own special way, with its majestic trees and broad meadows. We hiked maybe a half-mile past the
chalet, and considered hiking up to the pass, but I was threatening to get overheated. After exploring the valley for a little while and munching on some lunch, we decided to head back to camp.
We made it to camp by 2pm, and I was HOT. I was trembling as I raced to remove my boots, put on shorts and a t-shirt, and throw myself into Pyrites Creek to cool off. The water took my breath away and quickly brought down my core temperature. The water was too cold to stay submerged for long, so we alternated swimming and sunning for about an hour.
Now it was only 3pm, and this presented a problem. It was far too early to start the evening and dinner routines, but we had already achieved our Enchanted Valley goals. What should we do with our afternoon? After weighing our options, we decided to break camp and hike out to O'Neil's camp. O'Neil's was three miles from our current location, and 1/3 of the way back to the car. This was therefore a reasonable plan to give us an activity for the rest of our day, and also to put us closer to the car for our hike out of the woods on the next day. It didn't take us long to pack up and hit the trail.
We were less than a mile from O'Neil's camp when it happened. We saw a bear! We may have even seen two bears. The bear was working on a project in the middle of the trail about 30 yards in front of us. It was perched on a little dirt mound alongside the trail, tearing strips of wood from a stump. Our view was poor due to trees blocking our view, and the bear kept re-positioning, so it was unclear if the bear was working alone or if it had a cub working with it, too. We backed up, way up, so that we could still hear and see the bear but felt more comfortable with the distance. We kept talking to each other so that the bear knew where we were. We considered returning to Pyrites Creek, but I was tired. I had walked 6 miles to and from the Enchanted Valley, plus another 3 miles to this here bear. I was not in the mood to add mileage to both today and tomorrow's hikes out of fear of a bear. We alternated moments of waiting and retreating, waiting and retreating, until we unanimously decided to walk around the bear.
The trail containing the bear happened to be at a location favorable for circumnavigation. The mountain gently sloped on either side of the trail, and we knew that the trail was heading down and to the left. So, we went off-trail and cut across the mountain down and to the left, with Ryan leading the way. The ground was so littered with evergreen needles, sticks, and logs in various stages of decay that it didn't even seem like I was walking on earth anymore. Instead I was sprint-hiking across the springy ground, trying to keep up with Ryan as he navigated us to the trail as far away from the bear as reasonable. All the while we tried to talk to each other so that the bear knew where we were, but in a situation like that it's hard to think of things to say. I ended up singing Dory's song from Finding Nemo, "Just keep swimming, just keep swimming, just keep swimming."
Eventually we reunited with the trail. I wanted to run down the trail, to improve the distance between me and the bear or bears, but I had to settle for speed-hiking due to my pack and the fatigue. As I settled down from the bear scare I realized that walking around the bear was a metaphor for a lot of challenges that I've had in this life. I couldn't move the bear, and retreating wasn't a good option, so I had to find a way to proceed with the bear. I kept walking, and I walked around the bear. I didn't let the bear interfere with my plans. Luckily my brother was a good partner for this decision, as he has been for so many of my difficult decisions.
Shortly after the bear we arrived at O’Neil’s and set up camp. This campsite was nestled in the woods a bit more, but nonetheless had excellent creek access. We placed Big Agnes under a tree and next to a fallen log, then began our evening routines of cooking and water-pumping. This night's feast was bowtie pesto pasta with goat cheese and sundried tomatoes. I'm telling you, you've never tasted food so good as that prepared by my brother in the backcountry.
Unlike Pyrites Creek, this campsite had an established privy. I felt obligated to use the privy despite my proficiency at peeing in the woods, in part because there was another tenter nearby. Unfortunately, the privy was super creepy to get to. It was easily 200 steps from camp (judging by the step data below) at the end of a narrow trail through thick green underbrush that was as tall as I am. Thus, going to the bathroom was an exercise in bravery, particularly after seeing a bear so near to the camp. I ended up singing loudly to myself for each step of the harrowing journey to the privy, until I could lock myself inside. I'd start singing again right before I unlocked the door. This time my song of choice was the Beatles', "Hey Jude", but I always replace "Jude" with "June" because that is my niece's name. If my rendition of "Hey June" didn't scare the bears away, nothing would--Nah, nah nah, nah-nah nah nah.
After dinner and chores we headed down to the creek to relax. I thought it'd be nice to stay up a little later than the night before to see some stars. We found some ideally shaped stones and fashioned them into recliners in the creek. We kept our bodies dry on the stones while the water trekked downstream. We had great conversations, my brother and I. We discovered that we live by some of the same rules. My number one rule is: optimize. Ryan’s rule #1 of the backcountry is: don’t make a decision until you have to. Rule #2, for both of us: feels better when you earn it.
Sometime after 10pm it still wasn't very dark and we could only see four stars. We realized that it was high summer in the Pacific Northwest, so it wouldn't get truly dark until much later. We said goodnight to the creek, goodnight to our recliners, and turned in to Big Agnes.
Day 2. 28,802 steps. I think the bear scare is represented by the shortest orange bar between 4 and 6 pm.
After a deep, unbroken sleep in the backcountry, we awoke a little after 7 am to the sun beginning to warm our tent. We each crawled out of Big Agnes from our own personal door, our feet sinking in to the cool gray sand. It didn't take us long to get busy doing some camp chores.
Ryan used the single camp stove to brew us some coffee. He has an adorable little percolator coffee contraption that is made out of some sort of metal that is entirely too heavy, but my brother isn't bothered by the extra weight in his pack. After the coffee was brewed, he put on a pot of steel-cut oatmeal, loaded up with plump organic raisins and a scoop of brown sugar.
This is our little cooking area in the morning light. You can see the two-piece coffee pot with a black handle, sitting on the rock, to the left of the red fuel canister. |
Our boots, warming and drying in the sunshine. In the background you can see me down in the creek. |
Here I am in Pyrites Creek, pumping creek water through a filter to make it potable. |
This is the end of the tube, resting in a clear pool of water with very few visible particulates. |
The thing with the red top is the pump + filter. You work the handle up and down, sucking water out of the creek through the tube and into a water storage vessel (shown here in green + duct tape). |
And that concludes the water filtering lesson because that is when Ryan fell into Pyrites Creek and broke my
camera. Since I did not bring my cell
phone into the backcountry, I did not have further means for taking
photographs. Ryan had his phone, but it
was less than 20% charged so we had to use it sparingly. Thus, I have no further photos of this day (unless my brother supplies them to me...).
We left our tent and the majority of our supplies at Pyrites Creek, just carrying water and snacks for a day hike into the Enchanted Valley. It was about 3 miles from camp to the valley, and the forest looked much like it had yesterday but with more meadows. The meadows were remarkably dry and a bit brown from what had been one of the hottest and driest Junes on record. The trees, however, did not disappoint: tall, wide, old, and fragrant.
After a quick little hike we came upon the entrance to the Valley. It was marked by a tall wooden gate across the trail, unconnected to a fence or any further barrier. We opened the gate to pass, and dutifully closed it behind ourselves despite its unclear purpose. We crossed the creek on a huge log that had been carved into a bridge, with a handrail on only the left side. The other side of the log was completely open to the water tumbling over rocks at least a story below us. This was the most exciting creek crossing and my favorite one of the trip. The day was warming up considerably, and I was a bit hot from the hike, so it felt good to cool off in the moist air above the creek.
Around another bend or three we had views of the chalet in the valley that is on all of the photos and postcards.
From google images of the Enchanted Valley |
We made it to camp by 2pm, and I was HOT. I was trembling as I raced to remove my boots, put on shorts and a t-shirt, and throw myself into Pyrites Creek to cool off. The water took my breath away and quickly brought down my core temperature. The water was too cold to stay submerged for long, so we alternated swimming and sunning for about an hour.
Now it was only 3pm, and this presented a problem. It was far too early to start the evening and dinner routines, but we had already achieved our Enchanted Valley goals. What should we do with our afternoon? After weighing our options, we decided to break camp and hike out to O'Neil's camp. O'Neil's was three miles from our current location, and 1/3 of the way back to the car. This was therefore a reasonable plan to give us an activity for the rest of our day, and also to put us closer to the car for our hike out of the woods on the next day. It didn't take us long to pack up and hit the trail.
We were less than a mile from O'Neil's camp when it happened. We saw a bear! We may have even seen two bears. The bear was working on a project in the middle of the trail about 30 yards in front of us. It was perched on a little dirt mound alongside the trail, tearing strips of wood from a stump. Our view was poor due to trees blocking our view, and the bear kept re-positioning, so it was unclear if the bear was working alone or if it had a cub working with it, too. We backed up, way up, so that we could still hear and see the bear but felt more comfortable with the distance. We kept talking to each other so that the bear knew where we were. We considered returning to Pyrites Creek, but I was tired. I had walked 6 miles to and from the Enchanted Valley, plus another 3 miles to this here bear. I was not in the mood to add mileage to both today and tomorrow's hikes out of fear of a bear. We alternated moments of waiting and retreating, waiting and retreating, until we unanimously decided to walk around the bear.
The trail containing the bear happened to be at a location favorable for circumnavigation. The mountain gently sloped on either side of the trail, and we knew that the trail was heading down and to the left. So, we went off-trail and cut across the mountain down and to the left, with Ryan leading the way. The ground was so littered with evergreen needles, sticks, and logs in various stages of decay that it didn't even seem like I was walking on earth anymore. Instead I was sprint-hiking across the springy ground, trying to keep up with Ryan as he navigated us to the trail as far away from the bear as reasonable. All the while we tried to talk to each other so that the bear knew where we were, but in a situation like that it's hard to think of things to say. I ended up singing Dory's song from Finding Nemo, "Just keep swimming, just keep swimming, just keep swimming."
Eventually we reunited with the trail. I wanted to run down the trail, to improve the distance between me and the bear or bears, but I had to settle for speed-hiking due to my pack and the fatigue. As I settled down from the bear scare I realized that walking around the bear was a metaphor for a lot of challenges that I've had in this life. I couldn't move the bear, and retreating wasn't a good option, so I had to find a way to proceed with the bear. I kept walking, and I walked around the bear. I didn't let the bear interfere with my plans. Luckily my brother was a good partner for this decision, as he has been for so many of my difficult decisions.
Shortly after the bear we arrived at O’Neil’s and set up camp. This campsite was nestled in the woods a bit more, but nonetheless had excellent creek access. We placed Big Agnes under a tree and next to a fallen log, then began our evening routines of cooking and water-pumping. This night's feast was bowtie pesto pasta with goat cheese and sundried tomatoes. I'm telling you, you've never tasted food so good as that prepared by my brother in the backcountry.
Unlike Pyrites Creek, this campsite had an established privy. I felt obligated to use the privy despite my proficiency at peeing in the woods, in part because there was another tenter nearby. Unfortunately, the privy was super creepy to get to. It was easily 200 steps from camp (judging by the step data below) at the end of a narrow trail through thick green underbrush that was as tall as I am. Thus, going to the bathroom was an exercise in bravery, particularly after seeing a bear so near to the camp. I ended up singing loudly to myself for each step of the harrowing journey to the privy, until I could lock myself inside. I'd start singing again right before I unlocked the door. This time my song of choice was the Beatles', "Hey Jude", but I always replace "Jude" with "June" because that is my niece's name. If my rendition of "Hey June" didn't scare the bears away, nothing would--Nah, nah nah, nah-nah nah nah.
After dinner and chores we headed down to the creek to relax. I thought it'd be nice to stay up a little later than the night before to see some stars. We found some ideally shaped stones and fashioned them into recliners in the creek. We kept our bodies dry on the stones while the water trekked downstream. We had great conversations, my brother and I. We discovered that we live by some of the same rules. My number one rule is: optimize. Ryan’s rule #1 of the backcountry is: don’t make a decision until you have to. Rule #2, for both of us: feels better when you earn it.
Sometime after 10pm it still wasn't very dark and we could only see four stars. We realized that it was high summer in the Pacific Northwest, so it wouldn't get truly dark until much later. We said goodnight to the creek, goodnight to our recliners, and turned in to Big Agnes.
Day 2. 28,802 steps. I think the bear scare is represented by the shortest orange bar between 4 and 6 pm.
Wednesday, November 11, 2015
It's all there
Two hours. Yesterday I found myself with two unscheduled hours, just for me. I was unexpectedly released from work two hours early, the kids were still in school, and my husband was working. I cradled these two golden hours in the palm of my hand, not wanting to let them slip through my fingers. I thought of many things I could do with these two hours that would serve the progress of something--dinner, or shopping, or cleaning, or planning. I thought about calling a friend for some spontaneous and always needed friend time. Instead, I decided to walk. Yet another gorgeous day in what has been an autumn full of gorgeous days beckoned to me. I stopped by the house long enough to put on my walking shoes, then I drove to my favorite park.
Walking might not seem like much exercise, but it's my favorite thing to do. The other day I was playing bat-and-ball with my daughters, and Azalea was getting frustrated with me for one too many poor pitches. I laughed and told her that instead she should be delighted with the surprising quantity of good pitches that I hurled her way. I explained that her mom is not what you'd call an "athlete". Perhaps this lack of innate athleticism is what draws me to walking. Perhaps it's being outside. For whatever reason, I love it.
The park I walked at yesterday has a 3-mile paved trail around a lake, which is enjoyed by walkers, joggers, and cyclists. After walking this trail for about a quarter-mile, there is an option to split off onto a gravel trail that winds up a hill, around a marsh, and through a prairie. Far fewer people take this trail. It is my favorite trail. Without hesitation, I struck out from the car toward the unpaved trail.
The clouds formed a high and discontinuous ceiling over the prairie, blocking most of the sunlight while allowing glimpses of blue sky. I had to force myself to take my eyes off the big sky to keep from tripping. I had the trail all to myself, and I must have been the only passerby for some time because I startled several wild things. Occasionally a creature wiggled the grass, or splashed the water, or rustled the leaves as it scrambled to get away from me. I even saw a waterborne mammal, probably a muskrat. A rare sighting to be sure.
At the top of a hill is a remarkable overlook where the prairie spills over the hillside without the obstruction of trees or structures. I gazed over the prairie as I walked, marveling at the vastness of plant life that has all gone dormant but will grow anew in a few months. Suddenly my eyes caught sight of a solitary leaf, twisting as it fell from nowhere in particular. I was at the top of a treeless hill, looking down on grasses, with nothing but clouds above, so where did this leaf come from? I distracted myself from these musings by switching my focus to catching the leaf. It became tangled in a gust of wind and sped toward me, and my athleticism meter inched up a notch as I caught the leaf with one hand. I examined the leaf, feeling certain that it would be remarkable in someway. But it wasn't. It was a dry, brown, crumbly leaf, even a bit on the smallish side, with a few holes in it. I smiled at its ordinary appearance despite its magical entrance. I made a wish, because that seemed like the appropriate thing to do with a maybe-magical leaf, and released it back onto the wind. It lifted out of my hands for a moment before nose-diving into the grass across the trail.
I breathed deeply and allowed myself to be filled with gratitude for this day, for my life, for these two hours, for a maybe-magical leaf. It's all there for me, to support me. It's all there for me no matter what. It's all there for you, too. And it doesn't even require two hours.
Walking might not seem like much exercise, but it's my favorite thing to do. The other day I was playing bat-and-ball with my daughters, and Azalea was getting frustrated with me for one too many poor pitches. I laughed and told her that instead she should be delighted with the surprising quantity of good pitches that I hurled her way. I explained that her mom is not what you'd call an "athlete". Perhaps this lack of innate athleticism is what draws me to walking. Perhaps it's being outside. For whatever reason, I love it.
The park I walked at yesterday has a 3-mile paved trail around a lake, which is enjoyed by walkers, joggers, and cyclists. After walking this trail for about a quarter-mile, there is an option to split off onto a gravel trail that winds up a hill, around a marsh, and through a prairie. Far fewer people take this trail. It is my favorite trail. Without hesitation, I struck out from the car toward the unpaved trail.
The clouds formed a high and discontinuous ceiling over the prairie, blocking most of the sunlight while allowing glimpses of blue sky. I had to force myself to take my eyes off the big sky to keep from tripping. I had the trail all to myself, and I must have been the only passerby for some time because I startled several wild things. Occasionally a creature wiggled the grass, or splashed the water, or rustled the leaves as it scrambled to get away from me. I even saw a waterborne mammal, probably a muskrat. A rare sighting to be sure.
At the top of a hill is a remarkable overlook where the prairie spills over the hillside without the obstruction of trees or structures. I gazed over the prairie as I walked, marveling at the vastness of plant life that has all gone dormant but will grow anew in a few months. Suddenly my eyes caught sight of a solitary leaf, twisting as it fell from nowhere in particular. I was at the top of a treeless hill, looking down on grasses, with nothing but clouds above, so where did this leaf come from? I distracted myself from these musings by switching my focus to catching the leaf. It became tangled in a gust of wind and sped toward me, and my athleticism meter inched up a notch as I caught the leaf with one hand. I examined the leaf, feeling certain that it would be remarkable in someway. But it wasn't. It was a dry, brown, crumbly leaf, even a bit on the smallish side, with a few holes in it. I smiled at its ordinary appearance despite its magical entrance. I made a wish, because that seemed like the appropriate thing to do with a maybe-magical leaf, and released it back onto the wind. It lifted out of my hands for a moment before nose-diving into the grass across the trail.
I breathed deeply and allowed myself to be filled with gratitude for this day, for my life, for these two hours, for a maybe-magical leaf. It's all there for me, to support me. It's all there for me no matter what. It's all there for you, too. And it doesn't even require two hours.
Thursday, October 29, 2015
Open letter to a new cancer patient
I've been contacted by an organization called Cure Forward and invited to participate in a campaign. They are asking cancer survivors to write a letter to new cancer patients discussing their experiences and presenting advice. I don't know much about Cure Forward (beyond a press release that dubbed it "Tinder for clinical trials"), but it looks like it's going to be a powerful resource for cancer patients. At any rate, I have decided to write a letter, not to recap my experiences but to note the survival techniques that have worked for me thus far. Who knows, perhaps I'll address this letter to myself when my cancer flares up again.
Dear newly diagnosed cancer patient,
You've got this. You really do. I know that you're scared, and that every hour of uncertainty feels like a day without sleep, but you can do this.
The cancer isn't your enemy. It's a part of you. Sure, you'll live longer if the doctors can find a way to get it out of you, but until they do it is a part of the beautiful whole that is you. Your biggest enemy right now is fear. Fear of the cancer, fear of being sick, fear of feeling pain, fear of dying, fear of bringing sorrow to loved ones, fear of not being there for your children, fear of letting down your spouse.
I know these fears. At times I have lived with these fears daily. The key to success, the key to survival, is releasing your fear. I release my fear by breathing deeply, spending time in nature, exercising, hugging, meditating, and reading fiction. These activities help me to release my fear to the wind, which carries it far far from here across the plains. Find some activities that release your fear, and imagine a few cancer cells being carried along with it.
Sometimes you will feel weak, especially if chemotherapy is part of your treatment regime. I found that weakness was an open door to fear. When I physically felt weak, my mental fortitude broke down and the fearful thoughts creeped in. Find ways to turn your weakness into strength. Even when I was at my sickest, I took a walk every day. Some days I could only shuffle across the street and back, but I savored reminding my bones that I still needed them and impressing myself with my resilience.
See, cancer, you can't make me stop walking.
Sometimes you will feel bored with healing. You will cross a threshold between feeling sick and well, spending days at a time in a wellness purgatory. This period is difficult because you feel so much improved from your worst that your mind thinks you can walk around the block, or cook dinner, or play a game with your kids, but your actual capacity is to sit on your couch rather than lay in your bed. These days will drag out. Spice them up by listening to music, or inviting a friend over to visit you for a bit, or sitting outside.
I remember one particular boring, nauseous healing day during chemotherapy treatments for my second occurrence of breast cancer. My brother was visiting, to keep me company and support my family. He was working on his laptop at the table, and I was lying on the couch, feeling too crummy to watch TV or read but too good to fall asleep. My brother wanted to help, so he put some salsa music on the internet radio. I gradually let go of my whiny crumminess and started imaging dancing to live music outdoors in the summer. Soon I'd be out there dancing in the summer again.
See, cancer, you can't make me stop dancing.
Sometimes you will feel disappointed in yourself for not being able to do everything that you think you need to do. That's okay, but let it go. Indulge yourself, and immerse yourself in your own healing powers. Let your friends and family help you in the ways that they can.
Sometimes you will need to be even braver than you were yesterday. You might have things installed or injected in your body before you fully understand what they are or how they work. You might receive news that is worse than the worst news you thought you could get. But that's okay. Because it's within your power to be braver than you were yesterday.
One of my best ways of being brave is to find humor in the situation. A week after one particular chemotherapy treatment, I had terribly low numbers of cells in my blood. This was causing me to feel dreadful. My oncologist prescribed a blood transfusion, and as the transfusion was taking place I was filled with gratitude for the other human who donated his or her blood to me. I was overcome with appreciation for those cells entering my body and what they were going to do for me. I decided to write a letter. To the cells. From the other human. I welcomed them to my body and presented them with some House Rules. In addition to posting the letter on this blog, I also shared it with the doctors and nurses at my cancer center. We all had a good laugh.
See, cancer, you can't make me stop laughing.
Newly diagnosed cancer patient, please feel free to email me if you want to chat (30carnations (at) gmail (dot) com). I'm sure that I have much more to say, some of which I've already said in 5 years of blog posts during my cancer journey. I'd be privileged to help you, if I can.
To your health and mine,
Heather
Dear newly diagnosed cancer patient,
You've got this. You really do. I know that you're scared, and that every hour of uncertainty feels like a day without sleep, but you can do this.
The cancer isn't your enemy. It's a part of you. Sure, you'll live longer if the doctors can find a way to get it out of you, but until they do it is a part of the beautiful whole that is you. Your biggest enemy right now is fear. Fear of the cancer, fear of being sick, fear of feeling pain, fear of dying, fear of bringing sorrow to loved ones, fear of not being there for your children, fear of letting down your spouse.
I know these fears. At times I have lived with these fears daily. The key to success, the key to survival, is releasing your fear. I release my fear by breathing deeply, spending time in nature, exercising, hugging, meditating, and reading fiction. These activities help me to release my fear to the wind, which carries it far far from here across the plains. Find some activities that release your fear, and imagine a few cancer cells being carried along with it.
Sometimes you will feel weak, especially if chemotherapy is part of your treatment regime. I found that weakness was an open door to fear. When I physically felt weak, my mental fortitude broke down and the fearful thoughts creeped in. Find ways to turn your weakness into strength. Even when I was at my sickest, I took a walk every day. Some days I could only shuffle across the street and back, but I savored reminding my bones that I still needed them and impressing myself with my resilience.
See, cancer, you can't make me stop walking.
Sometimes you will feel bored with healing. You will cross a threshold between feeling sick and well, spending days at a time in a wellness purgatory. This period is difficult because you feel so much improved from your worst that your mind thinks you can walk around the block, or cook dinner, or play a game with your kids, but your actual capacity is to sit on your couch rather than lay in your bed. These days will drag out. Spice them up by listening to music, or inviting a friend over to visit you for a bit, or sitting outside.
I remember one particular boring, nauseous healing day during chemotherapy treatments for my second occurrence of breast cancer. My brother was visiting, to keep me company and support my family. He was working on his laptop at the table, and I was lying on the couch, feeling too crummy to watch TV or read but too good to fall asleep. My brother wanted to help, so he put some salsa music on the internet radio. I gradually let go of my whiny crumminess and started imaging dancing to live music outdoors in the summer. Soon I'd be out there dancing in the summer again.
See, cancer, you can't make me stop dancing.
Sometimes you will feel disappointed in yourself for not being able to do everything that you think you need to do. That's okay, but let it go. Indulge yourself, and immerse yourself in your own healing powers. Let your friends and family help you in the ways that they can.
Sometimes you will need to be even braver than you were yesterday. You might have things installed or injected in your body before you fully understand what they are or how they work. You might receive news that is worse than the worst news you thought you could get. But that's okay. Because it's within your power to be braver than you were yesterday.
One of my best ways of being brave is to find humor in the situation. A week after one particular chemotherapy treatment, I had terribly low numbers of cells in my blood. This was causing me to feel dreadful. My oncologist prescribed a blood transfusion, and as the transfusion was taking place I was filled with gratitude for the other human who donated his or her blood to me. I was overcome with appreciation for those cells entering my body and what they were going to do for me. I decided to write a letter. To the cells. From the other human. I welcomed them to my body and presented them with some House Rules. In addition to posting the letter on this blog, I also shared it with the doctors and nurses at my cancer center. We all had a good laugh.
See, cancer, you can't make me stop laughing.
Newly diagnosed cancer patient, please feel free to email me if you want to chat (30carnations (at) gmail (dot) com). I'm sure that I have much more to say, some of which I've already said in 5 years of blog posts during my cancer journey. I'd be privileged to help you, if I can.
To your health and mine,
Heather
Friday, October 2, 2015
Flattopper pride
I have two offerings from the internet in honor of breast cancer awareness month. First, my sister found this website by a woman who, like me, chose no reconstruction and does not wear a prosthesis. I've written about my choices previously, which can be found here and here. The writings and the images on the Flattopper Pride website are pretty incredible. I love that so many of us are rocking the flatness that is our new, original self.
http://www.flattopperpride.org/
Also, a friend of mine sent me a recent article from the Washington Post on having hidden cancer. Like me, the author of the piece is living with a terminal diagnosis but outwardly appears to be a healthy human. She has brain cancer, I have lung cancer. She was given 2-18 years to live, my prognosis is "optimistic" with continued treatment indefinitely. She and I both live each day to its fullest potential with infrequent thoughts of our disease, until the quarterly scans remind us of our precarious position between sickness and health, inflicting doubt about our ability to live. It's a lovely article.
https://www.washingtonpost.com/opinions/i-have-cancer-but-i-sometimes-forget/2015/09/17/244dec30-5bca-11e5-9757-e49273f05f65_story.html
Tomorrow I am going to walk in the Race for the Cure with my family. I walked it for the first time last year only three weeks after my mastectomy. I'm excited to be a part of the excitement again this year, and this time with a clean bill of health. Maybe I'll see you down there! :)
http://www.flattopperpride.org/
Also, a friend of mine sent me a recent article from the Washington Post on having hidden cancer. Like me, the author of the piece is living with a terminal diagnosis but outwardly appears to be a healthy human. She has brain cancer, I have lung cancer. She was given 2-18 years to live, my prognosis is "optimistic" with continued treatment indefinitely. She and I both live each day to its fullest potential with infrequent thoughts of our disease, until the quarterly scans remind us of our precarious position between sickness and health, inflicting doubt about our ability to live. It's a lovely article.
https://www.washingtonpost.com/opinions/i-have-cancer-but-i-sometimes-forget/2015/09/17/244dec30-5bca-11e5-9757-e49273f05f65_story.html
Tomorrow I am going to walk in the Race for the Cure with my family. I walked it for the first time last year only three weeks after my mastectomy. I'm excited to be a part of the excitement again this year, and this time with a clean bill of health. Maybe I'll see you down there! :)
Friday, September 25, 2015
Award!
I'm going to interrupt my Olympic hiking posts to interject a Washington D.C. post. Last week I traveled to D.C. to receive an early career scientist award, and several members of my supportive and loving family joined me. It was an overwhelming experience because I kept feeling the gravity of good fortune: to be successful, to be supported, to be alive. Also, I had to give a 5-minute acceptance speech, and I was a bit nervous about that. Despite the weighty emotions, it was such a wonderful experience! My grandparents rode a subway for the first time. My daughters visited the national monuments on the Mall. We visited the National Zoo and caught a glimpse of the newborn panda on the PandaCam. It was spectacular.
Below is a copy of my speech, which can also be viewed at minute 33 by following this link. Don't be alarmed by the login. Just type in your info and login.
Heather's acceptance speech:
Thank you very much, Joon. I am so very honored to be here today accepting
this award from ARS. I am especially
honored to be here among the many outstanding ARS employees who are also being
honored today. Perhaps the other
honorees will resonate with the strange feeling I have of receiving an honor
for what has most certainly been a team effort.
Dozens, if not hundreds, of people have contributed to this achievement,
starting with my husband Ian and my loving and supportive family, some of whom
have traveled from Iowa to be here today, including my grandparents. Thank you for being here to share this moment
with me, as you have time and again throughout my career. My team also includes the fantastic doctors, nurses,
friends, co-workers, and even acquaintances who navigated me through two
diagnoses of breast cancer in the past 5 years, and whose support was critical
to my survival.
I want also to thank the wonderful support staff and
scientific colleagues at my location in the beautiful Ames, Iowa who facilitate
my research and outreach endeavors. It is
impossible to name all of the mentors and collaborators who are in my heart to
thank, but I would like to name those whose guidance and intellect have been
critical throughout my career: Jo Handelsman,
Thad Stanton, Al Klingelhutz, Shawn Bearson, Torey Looft, Karen-Cloud-Hansen, and
John Bunge. Thank you for paving the
way, or for helping me to pave the way when the way could not be found.
My scientific impacts have been in the field of microbial
ecology, in particular regarding antibiotic resistance gene diversity. You are perhaps familiar with antibiotic
resistance in terms of “Superbugs”, which is a word for pathogenic bacteria
that have become so resistant to antibiotics that we can no longer treat them
with antibiotics. I don’t study
Superbugs, but I’m interested in the reservoir of antibiotic resistance genes
in the environment, how resistance genes move among bacteria, and in alternatives
to antibiotics that might prevent the emergence of new Superbugs. My research has helped to define resistance
gene diversity in both pristine and antibiotic-impacted ecosystems, from Alaska
to the pig gut. I hope that the data my
collaborators and I generate will inform scientifically sound policies to reduce
the risk of making more Superbugs, thus improving health and food safety.
I’d like to conclude by making two comments to my daughters. In high school I took an AP chemistry class
taught by a first-rate teacher, Mr. Ferrell.
One day following an exam, Mr. Ferrell tried to comfort the lesser-achieving
students by assuring us that we’d all hit our wall someday. “Everyone hits their wall,” he said. Ever since that day, I have been fearful of
my wall, wondering how high it would be, how wide it would be, would it hurt
when I hit it? Daughters, I am happy to
report that there are no walls, only doors, and it is up to you to walk through
them.
Second, in 2005 I was
representing the Graduate Women in Science organization at the University of
Wisconsin’s Committee on Women. I was
attending this committee meeting because graduate students in Madison were not
entitled to maternity leave of any kind, even if it was unpaid. I had researched several other universities
who had mechanisms for maternity leave for graduate students and was presenting
my case to the committee. Afterwards the
one male member of the Committee said, “Women think they can have it all!” Daughters, I am happy to report that with the
right support and some hard work, yes, you can have it all.
I am humbled by this award, and I am grateful to ARS for
being a door and for being a part of my having it all.
Wednesday, September 23, 2015
Pyrites Creek
Ryan parked the car at Grave's Creek right next to his vehicle's twin: a green Subaru Outback with Washington plates. I put on my SmartWool socks, carefully laced up my hiking boots, and settled into my pack. At this moment when embarking on a journey, I often feel a moment's hesitation: Did I pack enough socks? Will the kids be okay while I'm gone? Did I stow my keys where I'll find them again but not lose them along the way? This time, however, was different. This time there was no hesitation. I knew that I had everything I needed: my boots, my brother, and the woods. Nothing else mattered.
Our boots crunched on the gravel behind the row of cars, then stomped over a wooden footbridge into the woods. Into the woods.
The path was fairly wide for the first two miles. Too narrow for two people to walk together, but wide enough to pass oncoming hikers without difficulty. The first two miles see many day-hikers of folks who hike in to Pony Ridge. Pony Ridge is a beautiful place where the river has cut through the rock and a large wooden bridge carries the trail over it. We didn't linger with the day-hikers, though. We plunged ahead, eager to keep pounding the trail.
Soon after Pony Ridge, the trail became more narrow and less traveled. Ryan and I spread out a little bit, each lost in our own thoughts. We were always in each others' sight, but sometimes you don't need to talk in order to enjoy the company of another human. Especially on the trail. The rhythm of my own footsteps on the remote soil sent me into a meditative state. My mind quit chewing on the various problems that had inhabited it for weeks. I released the problems into Mother Nature's capable hands. I just walked.
We reached the first backcountry campsite 6 miles from the start. Ryan and I were both feeling great, so we decided to go another 3 miles to the next campsite at Pyrite's Creek. I didn't know for sure if I could make it, but I thought I could. So I did. When we got there, Ryan gave me a big hug and said that I killed it. I know I did. I knew I could. We arrived at 6:07, and his projected arrival time was 6:30. We beat his projection by 23 minutes! I felt rather accomplished.
I also felt rather spent. After all, I had just hiked 9 miles, mostly uphill, with a pack. I sat on the sandy bank while he set up the tent and filtered some water. Soon I was feeling refreshed and able to participate in camp life.
After dinner we were both ready for bed, so we turned into Big Agnes. It was still light out. I was asleep by 8:30.
Ryan's girlfriend, A, loaned me her FitBit for our hiking trip. Afterwards she hooked me up with the data, which shows how intense this first day of hiking was. I walked 24,935 steps that day. And I loved every one of them.
Our boots crunched on the gravel behind the row of cars, then stomped over a wooden footbridge into the woods. Into the woods.
This was the first of many creek crossings. |
Soon after Pony Ridge, the trail became more narrow and less traveled. Ryan and I spread out a little bit, each lost in our own thoughts. We were always in each others' sight, but sometimes you don't need to talk in order to enjoy the company of another human. Especially on the trail. The rhythm of my own footsteps on the remote soil sent me into a meditative state. My mind quit chewing on the various problems that had inhabited it for weeks. I released the problems into Mother Nature's capable hands. I just walked.
My two feet, carrying me over. |
This odd little ptarmigan was hiking alongside us at one point. I could have picked it up! |
That's a big tree! |
I also felt rather spent. After all, I had just hiked 9 miles, mostly uphill, with a pack. I sat on the sandy bank while he set up the tent and filtered some water. Soon I was feeling refreshed and able to participate in camp life.
Ryan filtering some water for us at Pyrites Creek |
Our tent, Big Agnes, at Pyrites Creek |
This is most of our food in the bear can, with a view of our campsite on the banks of Pyrites Creek. |
Ryan made haystacks (deconstructed tacos) for dinner. Best meal I've ever had! |
We took shots of Herdez salsa from a can to avoid spilling any on the ground and attracting vermin. Pass the Herdez! |
After dinner we were both ready for bed, so we turned into Big Agnes. It was still light out. I was asleep by 8:30.
Ryan's girlfriend, A, loaned me her FitBit for our hiking trip. Afterwards she hooked me up with the data, which shows how intense this first day of hiking was. I walked 24,935 steps that day. And I loved every one of them.
Wednesday, August 26, 2015
Pre-Olympics in Seattle
I arrived in Seattle to one of the hottest and driest Junes the area had ever seen. My brother and his girlfriend, A, took me out for brunch at a cute neighborhood crepe place. The coffee was remarkable, and the atmosphere was sweltering. Few establishments in Seattle have air conditioning, and this restaurant was no exception. We were sweaty by the time we finished our breakfast.
Then I set up a temporary camp at their new house while we prepared our supplies for the hike. I don't know what I enjoyed most: organizing my clothes and personal items in my pack, or spending time with my little brother in his home. It's very special to be with someone you love in the place that makes them the most happy.
We went for a walk in the neighborhood for a beer and some supplies. He had been putting off buying a new tent for awhile, so I was glad to be a catalyst to improve his backpacking supplies. We went into a local store and he found a Big Agnes-brand 3-person tent. I referred to the tent as Big Agnes for the duration of our trip. How could I not? It's called Big Agnes.
We walked past a farmer's market that was packing up, and a farmer at one of the stands asked us if we'd like some raspberries. I said thank you, I'd love some, and he handed me an entire flat of raspberries! We carried the berries with us to King's pub where the bartender used them to make us a custom raspberry margarita. These things only happen on vacation!
Back at Ryan's house he packed our food in bear-proof containers before stuffing it into his pack. Always a gentleman, he didn't allow me to pack any of our mutual food or equipment in my backpack. I only packed my own water and supplies. While he tended to the food, I made us a pre-hike raspberry pie, because that's what you do when you're given a flat of raspberries the night before heading into the backcountry. You bake them into a pie.
Fortunately I was pretty worn out from my long day of flying, planning, walking, and packing, so I was ready to turn into my cozy bed despite my high level of excitement. A. had made the guest room very welcoming for me, with chocolate bars, water bottles, and Tim's chips displayed on the nightstand. I rearranged the decorative pillows to make room for my head, read a few chapters of The Invention of Wings, then snuggled in for the night.
I awoke to the soft morning light of Seattle slanting through the wooden blinds. This is the day, I thought. It has finally arrived. I am going hiking in the Olympic Mountains.
Ryan scrambled some eggs with peppers, mushrooms, onions, tomatoes, olives, and cheese. I ate at their kitchen table, admiring the fine details of their newly updated kitchen: butcher block table top, self-installed beer tap, tiled backsplash, a potted orchid blooming over the table. The chickens made their morning clucking noises behind me in the yard. I could have stayed there all day but I lingered only for a moment; it was time to finalize our packs and hop in the car.
Here we go! We went for a walk in the neighborhood for a beer and some supplies. He had been putting off buying a new tent for awhile, so I was glad to be a catalyst to improve his backpacking supplies. We went into a local store and he found a Big Agnes-brand 3-person tent. I referred to the tent as Big Agnes for the duration of our trip. How could I not? It's called Big Agnes.
We walked past a farmer's market that was packing up, and a farmer at one of the stands asked us if we'd like some raspberries. I said thank you, I'd love some, and he handed me an entire flat of raspberries! We carried the berries with us to King's pub where the bartender used them to make us a custom raspberry margarita. These things only happen on vacation!
Ryan, A., and me at King's pub |
Fortunately I was pretty worn out from my long day of flying, planning, walking, and packing, so I was ready to turn into my cozy bed despite my high level of excitement. A. had made the guest room very welcoming for me, with chocolate bars, water bottles, and Tim's chips displayed on the nightstand. I rearranged the decorative pillows to make room for my head, read a few chapters of The Invention of Wings, then snuggled in for the night.
I awoke to the soft morning light of Seattle slanting through the wooden blinds. This is the day, I thought. It has finally arrived. I am going hiking in the Olympic Mountains.
Ryan scrambled some eggs with peppers, mushrooms, onions, tomatoes, olives, and cheese. I ate at their kitchen table, admiring the fine details of their newly updated kitchen: butcher block table top, self-installed beer tap, tiled backsplash, a potted orchid blooming over the table. The chickens made their morning clucking noises behind me in the yard. I could have stayed there all day but I lingered only for a moment; it was time to finalize our packs and hop in the car.
Ryan and his friends have a tradition that on their way out of town to go backpacking they top at their favorite bakery for some treats. Who was I to stand in the way of tradition? The bakery was well-stocked with all sorts of goodies and smells. It was very hard to choose. I fell back on an old favorite, a croissant, because I love croissants and it is fun to be in search of the world's finest croissant. I also got a chocolate macaroon that was incredible. But Ryan hit the pastry jackpot by trying something new: a chocolate bismark. Neither of us were familiar with bismarks, but now we can't go back. It had a flaky and savory exterior, a custard-filled interior, and a light coating of chocolate icing. It was the best pastry I've ever had.
Then we were off! Driving south out of Seattle, west through Olympia, and north up the peninsula. The excitement was building with every mile. At 11:30 we pulled into the Ranger's station at Lake Quinault to get our backcountry pass. The ranger gave us a bit of info about bear sightings, camping in the backcountry, and the weather. In minutes we were driving down a winding gravel road to park the car at Graves Creek.
Monday, August 24, 2015
Legendary
How can it be that summer is over and today is the first day of school? Summer went by too quickly, and I have not properly documented my comings and goings. That's because I've been out living instead of in blogging. I have begun many stories, and I hope to finish them and post them in the coming days.
Today's story is going to cover several things that happened in the month of July. At the beginning of the month was my hiking trip in the Olympic Mountains. It was every bit as incredible as I imagined it would be! Walking in the woods was a restorative activity after a somewhat stressful year of recovery. Taking one step at a time, over logs, under logs, and around logs, helped me truly realize just how strong I am. In addition to the physical achievement of hiking 10 miles per day for 3 days, I had the personal satisfaction of getting away from the routines for awhile. I forgot how unscheduled a couple of grown-ups could be for a couple of days, and it was rejuvenating. Plus, my brother was a wonderful host, guide, and companion. He cracks me up.
A few days after I returned to the office from my backpacking trip, I got a phone call from the Big Boss (my boss's boss's boss in the district office). He was calling to congratulate me because I won a really big award! I am an Early Career Scientist award-winner for 2015. I get to go to Washington D.C. in September to receive the award. Woo hoo! I'm so excited! All sorts of loved ones are going to accompany me to D.C.: my daughters, dad, stepmom, grandparents, and mother-in-law. What on earth am I going to wear? Don't make me buy a pantsuit!!
I was beginning to feel rather legendary when two weeks later I found myself once again in that dark little room, meditating with my yellow paintbrushes while the radioactive glucose worked its way around my cells. This time I got my PET scan results on the same day as the scan, and guess what? All clear again! Boom! The legend continues! That's the third clean PET scan in a row, friends. Well, in the interest of full disclosure, the current PET scan did show a tiny bit of activity on one ovary, but a follow-up ultrasound revealed that there is nothing abnormal going on. So again I say, clear PET scan! Huzzah!
Two weeks ago, in August, I had a 6-month follow-up with Dr. Medical Oncologist at the other cancer center. This is my Her2-cancer expert. She couldn't have been more thrilled with the PET scan results (in fact, I daresay she had a look of disbelief on her face). I asked if we could stretch out the PET scans a bit, now that I've had 3 clean ones, and she said yes but just a bit. Her proposed PET scan schedule is every 4-5 months. Ugh, that's still awfully frequent scanning, but I'll take it. It'll be 3 PET scans a year instead of 4, which I suppose will make a big difference in terms of my schedule and exposure to radioactivity. She also still plans to keep me on the Herceptin and Pertuzumab treatments indefinitely, as previously planned, as long as my heart holds up. I get echo cardiograms of my heart every 3 months to make sure it's not being adversely affected by the treatments. Again, I'll take it. Finally, she mentioned that if these drugs ever stop working for me, there are already new treatment options available for Her2 cancers. Wow! That's incredible! I hope I don't have to explore those options for a long, long time, but it's nice to know that they are there.
Two days ago, on Aug. 22, was my one year anniversary since my last hard chemo. I can't believe that it's been a year already. Time flies when you're feeling well, I guess. I am so grateful to have had this year, and I feel ready to snag another one. Dr. Medical Oncologist said that when I make it to my 10-year survivorship, she can retire. Thanks for giving me a new survivorship goal, Dr. MO. Here's to sending you into early retirement!
Today's story is going to cover several things that happened in the month of July. At the beginning of the month was my hiking trip in the Olympic Mountains. It was every bit as incredible as I imagined it would be! Walking in the woods was a restorative activity after a somewhat stressful year of recovery. Taking one step at a time, over logs, under logs, and around logs, helped me truly realize just how strong I am. In addition to the physical achievement of hiking 10 miles per day for 3 days, I had the personal satisfaction of getting away from the routines for awhile. I forgot how unscheduled a couple of grown-ups could be for a couple of days, and it was rejuvenating. Plus, my brother was a wonderful host, guide, and companion. He cracks me up.
A few days after I returned to the office from my backpacking trip, I got a phone call from the Big Boss (my boss's boss's boss in the district office). He was calling to congratulate me because I won a really big award! I am an Early Career Scientist award-winner for 2015. I get to go to Washington D.C. in September to receive the award. Woo hoo! I'm so excited! All sorts of loved ones are going to accompany me to D.C.: my daughters, dad, stepmom, grandparents, and mother-in-law. What on earth am I going to wear? Don't make me buy a pantsuit!!
I was beginning to feel rather legendary when two weeks later I found myself once again in that dark little room, meditating with my yellow paintbrushes while the radioactive glucose worked its way around my cells. This time I got my PET scan results on the same day as the scan, and guess what? All clear again! Boom! The legend continues! That's the third clean PET scan in a row, friends. Well, in the interest of full disclosure, the current PET scan did show a tiny bit of activity on one ovary, but a follow-up ultrasound revealed that there is nothing abnormal going on. So again I say, clear PET scan! Huzzah!
Two weeks ago, in August, I had a 6-month follow-up with Dr. Medical Oncologist at the other cancer center. This is my Her2-cancer expert. She couldn't have been more thrilled with the PET scan results (in fact, I daresay she had a look of disbelief on her face). I asked if we could stretch out the PET scans a bit, now that I've had 3 clean ones, and she said yes but just a bit. Her proposed PET scan schedule is every 4-5 months. Ugh, that's still awfully frequent scanning, but I'll take it. It'll be 3 PET scans a year instead of 4, which I suppose will make a big difference in terms of my schedule and exposure to radioactivity. She also still plans to keep me on the Herceptin and Pertuzumab treatments indefinitely, as previously planned, as long as my heart holds up. I get echo cardiograms of my heart every 3 months to make sure it's not being adversely affected by the treatments. Again, I'll take it. Finally, she mentioned that if these drugs ever stop working for me, there are already new treatment options available for Her2 cancers. Wow! That's incredible! I hope I don't have to explore those options for a long, long time, but it's nice to know that they are there.
Two days ago, on Aug. 22, was my one year anniversary since my last hard chemo. I can't believe that it's been a year already. Time flies when you're feeling well, I guess. I am so grateful to have had this year, and I feel ready to snag another one. Dr. Medical Oncologist said that when I make it to my 10-year survivorship, she can retire. Thanks for giving me a new survivorship goal, Dr. MO. Here's to sending you into early retirement!
Monday, June 22, 2015
Walkin'
I never did figure out the correct pronunciation for Wernigerode. "Vern-i-grot-en"? "Vern-e-ger-te?" "Vern-e-grot-e?" It was a beautiful and historic town in the Harz mountains in the former East Germany. The cab ride from the Hannover airport was a harrowing 1.5 hours, including a speedy jaunt on the autobahn. Despite my lurking carsickness, I was able to appreciate that the German countryside in May was spectacular. The brilliant green and yellow fields unfolded around every bend until finally the rooftops of Wernigerode appeared.
Photos from my trip (I apologize for not taking the time to paste them in here, but doing it this way saved me an extra download-upload step):
Overlooking Wernigerode, seeming to jut out of the mountainside, was an enormous 900-year-old castle. I couldn't see the castle from my hotel room, but I could feel its presence. On the first night of the conference everyone was escorted up to the castle courtyard for a reception at sunset. The route wound down narrow cobblestone streets of shops and residences, through the city center, then up a wide switchback to the castle gates. At the top, the path opened into a garden the size of a baseball field, with a discrete fountain in the middle and surrounded by a low wall and several turrets. From the garden we climbed a broad spiral staircase up into the castle courtyard, which featured flowering plants and frightening gargoyles.
We didn't tour the castle that night, but I was enchanted by it nonetheless. The conference was very busy and full of interesting and new topics to learn and people to meet. It was also full of sitting. Additionally, the fact that hiking up to it was perfect training for my upcoming Olympic National Park hike was not lost on me. Therefore on that first night, I made it my goal to walk up to the castle every day of the conference.
Perhaps the best things about my daily castle hike were the friends I made. Every day, I invited other conference attendees who happened to be near me when I decided to walk, and a few of them accepted my invitation. R was so into walking that we walked extra distances and discovered a free zoo and a hiking trail into the forest. F joined us on another day and delighted me with plans for her upcoming Irish cycling vacation. It was a delightful break from the conference, and hopefully decent training for my upcoming walk in the woods.
Photos from my trip (I apologize for not taking the time to paste them in here, but doing it this way saved me an extra download-upload step):
The green German countryside
The castle on the mountain
The town square
Some new friends and I in the town square
Me, standing by the smallest house in Wernigerode
A stunning window in the castle
The castle dining room was breathtaking
A very old horse stable that was converted to a celebration hall
Me, on a German mountaintop
The castle on the mountain
The town square
Some new friends and I in the town square
Me, standing by the smallest house in Wernigerode
A stunning window in the castle
The castle dining room was breathtaking
A very old horse stable that was converted to a celebration hall
Me, on a German mountaintop
Wednesday, May 27, 2015
Heather's big climb redoux
I don't know how this happens, this passage of time between blog posts. I've thought of about a hundred things to write about, but I haven't taken the time to write any of them. The main reason is that my primary blogging time occurs after the kids are in bed, but lately I've been stealing that time for exercising. I think it's a worthy substitute under any circumstance, but particularly since I'm training for something.
I'm pretty sure that this is the first physical goal that I've ever had in my entire life, and it's a good one if I do say so myself. At the end of June, the spouse and I are taking a trip WITHOUT THE KIDS (they'll be at grandpa and grandma's, so don't feel too badly for them) for the first time ever to go and do this: Hike the enchanted valley in Olympic National Park!
http://www.wta.org/go-hiking/hikes/enchanted-valley
I am so freaking excited! I've been craving a mountainous adventure ever since my brother's friend made me this last summer:
So I'm doing it! I'm going on a big ol' hike in the Olympic Mountains!!
I asked my brother how to train for such a thing, and his response was one word: Stairs. I said how many, he said just do a lot. I said how often, he said whenever you can. So, I've been walking around this flat town a couple times a week, wearing a backpack filled with old textbooks, and incorporating at least a few minutes of stairs down into the floodplain that is a city park. It'll do, it'll do.
I've been up to other adventures, too, but I think that they are worthy of their own posts eventually. Some have been quite poignant and moving for me. I'll find the time to write them up, I swear. One quick point I can make is that it is clear that my hemoglobin is at long last in the normal range for a healthy human being. PSA: Please don't take for granted how fabulous you feel. Thank your hemoglobin. It was not until I started feeling so fabulous that I realized how tired I had been for so long. Every day I feel more and more fabulous. Fabulous.
In other news, I'm pretty sure that I forgot to post the news that my PET scan last month was TOTALLY CLEAR again. That's two clear ones in a row, huzzah!!!! Not sure yet if I get a longer leash in terms of extending the time between PET scans. Dr. Oncologist would prefer to have a longer leash and therefore fewer PET scans, but I need to consult with Dr. Medical Oncologist (Her2 expert) and get her opinion. I'll have that appointment in July or so.
In the meantime, happy hiking, everyone!
I'm pretty sure that this is the first physical goal that I've ever had in my entire life, and it's a good one if I do say so myself. At the end of June, the spouse and I are taking a trip WITHOUT THE KIDS (they'll be at grandpa and grandma's, so don't feel too badly for them) for the first time ever to go and do this: Hike the enchanted valley in Olympic National Park!
http://www.wta.org/go-hiking/hikes/enchanted-valley
I am so freaking excited! I've been craving a mountainous adventure ever since my brother's friend made me this last summer:
So I'm doing it! I'm going on a big ol' hike in the Olympic Mountains!!
I asked my brother how to train for such a thing, and his response was one word: Stairs. I said how many, he said just do a lot. I said how often, he said whenever you can. So, I've been walking around this flat town a couple times a week, wearing a backpack filled with old textbooks, and incorporating at least a few minutes of stairs down into the floodplain that is a city park. It'll do, it'll do.
I've been up to other adventures, too, but I think that they are worthy of their own posts eventually. Some have been quite poignant and moving for me. I'll find the time to write them up, I swear. One quick point I can make is that it is clear that my hemoglobin is at long last in the normal range for a healthy human being. PSA: Please don't take for granted how fabulous you feel. Thank your hemoglobin. It was not until I started feeling so fabulous that I realized how tired I had been for so long. Every day I feel more and more fabulous. Fabulous.
In other news, I'm pretty sure that I forgot to post the news that my PET scan last month was TOTALLY CLEAR again. That's two clear ones in a row, huzzah!!!! Not sure yet if I get a longer leash in terms of extending the time between PET scans. Dr. Oncologist would prefer to have a longer leash and therefore fewer PET scans, but I need to consult with Dr. Medical Oncologist (Her2 expert) and get her opinion. I'll have that appointment in July or so.
In the meantime, happy hiking, everyone!
Friday, April 17, 2015
Am I? Can I?
I found myself at the Oncology clinic every day this week for iron infusions. This is because my hemoglobin and iron were dreadfully low at my chemo appointment on Monday. Dr. Oncologist said that I'd lost two units of blood since she'd last seen me! Well, I knew exactly where it had gone, and suffice it to say that my ovaries are on some continuum of healing but are currently behaving like those of a 50-year-old woman. We don't yet have a plan for how to deal with that, and I probably won't discuss it further on the blog, but the significant point is that I am periodically weak and bloodless.
Dr. Oncologist ordered iron infusions into my port to get me fixed up as quickly as possible. They were a piece of cake, only 30 minutes each day for 5 days, and the only side effects were dreadful headaches on each of the first three days. By Wednesday I had more spring in my step and was feeling better. However, I was surprised by how much they disrupted my mental game.
I have become accustomed to only having an appointment every three weeks. It has been glorious. I have picked up every thread of my life, I think. I'm still behind on some science things and some house things, but I'm working hard on everything and having so much fun doing it. Receiving treatment once every three weeks is a sustainable frequency that allows me the freedom to live my life while still being responsible to my disease.
Going to Oncology every day messed with my head for numerous reasons. Reason 1: It is disruptive to my other lives. In my science life, I am having a hard time keeping up with my bank of paid leave that I can use for medical appointments. I'm using it faster than I accrue it. In my mom life, Eleanor was home sick a few days this week, so I had to call on a friend (D you rock my world!) to sit with her so that I could go get my treatments. The coordination kinda stressed me out.
Reason 2: The waiting room. Oh, the oncology waiting room. I have blogged about the waiting room before. Sometimes I overhear endearing conversations among old folks, and other times I learn life lessons from new friends. This week, however, I struggled to find inspiration in the waiting room. Everyone seemed particularly glum, bald, and phlemy. Dr. Oncologist has told me that she avoids the waiting room, and now I understand why.
On Wednesday I sat somewhat in the middle of three men who seemed to be together. The two nearest to me were talking the cancer talk, trying to one-up each other with the procedures they'd undergone. "Drug X? Oh, that was nothing! You don't know pain until you've had your Y biopsied. I tell you what, that's the worst I've been through!" When they both paused for air, the third man tried to change the subject. "Did you see that article about the Keystone pipeline and politics? He's for it, she's against it, and I just don't know what I think." The other two men did no more than blink at him before resuming their cancer conversation. "I was an electrician, union man. I retired 5 years early, and boy am I glad I did because I got this cancer diagnosis the year I was supposed to retire. Glad I got to have a few years of fun before I go!" Oh man, they couldn't call my name fast enough that day.
Because I'm not one of them, right? I mean I am, and I was, but I'm not? Not now?
And if I am one of them, should I be doing all of these other things? CAN I do all of these other things? Maybe I can't actually do these other things but I think I can? The imposter syndrome meets stage 4 breast cancer.
I am actually no more or less mortal than the rest of you all, I just spend more time thinking about it than you do. Average folks probably think about them once every five years or so, when they get rear-ended or have a bout of high blood pressure. My experiences in the oncology waiting and treatment rooms bring these thoughts to the surface all the time, whether I'm ready for them or not. For my part, I acknowledge that they are a part of me while trying to think about them less often. However, I have a PET scan next Friday (4/24), so I don't anticipate any mental breaks in the near future.
In the meantime I'm going to polish a 5-year research proposal, submit a grant proposal, and finish a manuscript. I'm going to buy some paint and rearrange some furniture. I'm going to keep working on the bike-riding and shoe-tying lessons. I'm going to discuss books with friends. I'm going to go to the movies with my husband and eat a ton of popcorn. I suppose that I am, and I can, until someone tells me otherwise. One day at a time? Ignorance is bliss? Just do it? Something like that.
Dr. Oncologist ordered iron infusions into my port to get me fixed up as quickly as possible. They were a piece of cake, only 30 minutes each day for 5 days, and the only side effects were dreadful headaches on each of the first three days. By Wednesday I had more spring in my step and was feeling better. However, I was surprised by how much they disrupted my mental game.
I have become accustomed to only having an appointment every three weeks. It has been glorious. I have picked up every thread of my life, I think. I'm still behind on some science things and some house things, but I'm working hard on everything and having so much fun doing it. Receiving treatment once every three weeks is a sustainable frequency that allows me the freedom to live my life while still being responsible to my disease.
Going to Oncology every day messed with my head for numerous reasons. Reason 1: It is disruptive to my other lives. In my science life, I am having a hard time keeping up with my bank of paid leave that I can use for medical appointments. I'm using it faster than I accrue it. In my mom life, Eleanor was home sick a few days this week, so I had to call on a friend (D you rock my world!) to sit with her so that I could go get my treatments. The coordination kinda stressed me out.
Reason 2: The waiting room. Oh, the oncology waiting room. I have blogged about the waiting room before. Sometimes I overhear endearing conversations among old folks, and other times I learn life lessons from new friends. This week, however, I struggled to find inspiration in the waiting room. Everyone seemed particularly glum, bald, and phlemy. Dr. Oncologist has told me that she avoids the waiting room, and now I understand why.
On Wednesday I sat somewhat in the middle of three men who seemed to be together. The two nearest to me were talking the cancer talk, trying to one-up each other with the procedures they'd undergone. "Drug X? Oh, that was nothing! You don't know pain until you've had your Y biopsied. I tell you what, that's the worst I've been through!" When they both paused for air, the third man tried to change the subject. "Did you see that article about the Keystone pipeline and politics? He's for it, she's against it, and I just don't know what I think." The other two men did no more than blink at him before resuming their cancer conversation. "I was an electrician, union man. I retired 5 years early, and boy am I glad I did because I got this cancer diagnosis the year I was supposed to retire. Glad I got to have a few years of fun before I go!" Oh man, they couldn't call my name fast enough that day.
Because I'm not one of them, right? I mean I am, and I was, but I'm not? Not now?
And if I am one of them, should I be doing all of these other things? CAN I do all of these other things? Maybe I can't actually do these other things but I think I can? The imposter syndrome meets stage 4 breast cancer.
I am actually no more or less mortal than the rest of you all, I just spend more time thinking about it than you do. Average folks probably think about them once every five years or so, when they get rear-ended or have a bout of high blood pressure. My experiences in the oncology waiting and treatment rooms bring these thoughts to the surface all the time, whether I'm ready for them or not. For my part, I acknowledge that they are a part of me while trying to think about them less often. However, I have a PET scan next Friday (4/24), so I don't anticipate any mental breaks in the near future.
In the meantime I'm going to polish a 5-year research proposal, submit a grant proposal, and finish a manuscript. I'm going to buy some paint and rearrange some furniture. I'm going to keep working on the bike-riding and shoe-tying lessons. I'm going to discuss books with friends. I'm going to go to the movies with my husband and eat a ton of popcorn. I suppose that I am, and I can, until someone tells me otherwise. One day at a time? Ignorance is bliss? Just do it? Something like that.
Tuesday, March 17, 2015
100 Miles to Nowhere recap
I haven't spent much time on Blogger lately, so when I logged in last night to write a post I was surprised to see that my friend Smithers had written a post about her 100 Miles of Nowhere (MoN) charity event for my family. Further exploration revealed that there are at least three posts about 100 MoN, complete with photos of EVERY mile that was sponsored by someone. I had never seen most of these photos before! I now get to see who showed support and their specific messages! I am deeply touched. Follow the links below to read about every moment of 100 MoN.
The blissful morning ride
The inner darkness of the afternoon ride
The ride that never ends
The novelty check at the end
The blissful morning ride
The inner darkness of the afternoon ride
The ride that never ends
The novelty check at the end
Monday, March 16, 2015
Dear Calvin
Dear Calvin,
Happy birthday! I hope that you had a wonderful time at your birthday party last weekend! It was so much fun to see you toddling all over the place and babbling about everything. You, as always, were the life of the party, but not in the usual way that that expression is meant. You were the life of the party with your chill demeanor and delightful personality. You had smiles for everyone. You do not yet know the meaning of "stranger danger".
Your mom made you your own cake with gobs of blue frosting. She took off your handsome birthday shirt and put you in the high chair, left to explore the sweet wonder of having an entire cake all to yourself on your first birthday. You were tentative at first, not knowing what to do with either the cake or with the 30 pairs of eyes smiling at you expectantly. But once that first tiny finger planted a dab of blue frosting on your tongue, you dug in with both hands. You made a complete mess of the cake and of yourself. Who's idea was the blue frosting, anyway? A generous glob of it remained in your left nostril an hour after you'd been cleaned up. So precious.
Your birthday reminded me that it has been a year since I started this round of cancer treatment, which will now carry on indefinitely. How naive I was to think that my cancer book was concluded! How surprised I was to begin a new cancer chapter! How secure I had been in my cancer-free existence!
In some ways it is surprising to me that it has been a year, but in other ways it is not. It seems like a lifetime ago that I had a breast, hair in a ponytail, and the "this is how it works when you used to have cancer" attitude. Conversely, it seems like only yesterday I was nauseous, yesterday Aunt Jacque cleaned my room, yesterday I had a PICC line, yesterday Lori rubbed my feet, yesterday I couldn't wait to get out of the hospital, yesterday I was using your stroller as a walker to support my walk around the block. Cancer treatment seems like a parallel life that I recently, somewhat briefly, lived and survived. Scarcely related to the life that I'm trying to lead now.
The other night I went on a walk all by myself, which is something I rarely do. I found myself walking part of the route that we used to shuffle along. I paused on the corner that we often had to pause at to give me a little rest before making the return journey home. I remember the first time you sat in the forward-facing stroller instead of being perched atop in your carseat. You were so quiet, such a quiet little baby, but your legs just wouldn't stop kicking. You were so excited to be facing the world head-on. It must have been quite a different perspective for you, rather than watching the sky and leaves pass overhead from your bucket seat. You were kicking so hard I remember stopping to make sure that you were securely buckled; your mom and I were afraid that you were going to kick right out of that stroller with your excitement. Thanks for being my cancer-kicking buddy.
Spring is starting to show its pretty face around here. Soon the crocuses will be up. They are my favorite springtime flower. Let's go for a walk again soon, okay, and look for some crocus flowers? This time we can walk together because neither of us needs the stroller anymore. I miss our walks.
I love you, Calvin! Happy birthday!
Love always,
xoxoxoxoxo
Aunt Heather
Happy birthday! I hope that you had a wonderful time at your birthday party last weekend! It was so much fun to see you toddling all over the place and babbling about everything. You, as always, were the life of the party, but not in the usual way that that expression is meant. You were the life of the party with your chill demeanor and delightful personality. You had smiles for everyone. You do not yet know the meaning of "stranger danger".
Your mom made you your own cake with gobs of blue frosting. She took off your handsome birthday shirt and put you in the high chair, left to explore the sweet wonder of having an entire cake all to yourself on your first birthday. You were tentative at first, not knowing what to do with either the cake or with the 30 pairs of eyes smiling at you expectantly. But once that first tiny finger planted a dab of blue frosting on your tongue, you dug in with both hands. You made a complete mess of the cake and of yourself. Who's idea was the blue frosting, anyway? A generous glob of it remained in your left nostril an hour after you'd been cleaned up. So precious.
Your birthday reminded me that it has been a year since I started this round of cancer treatment, which will now carry on indefinitely. How naive I was to think that my cancer book was concluded! How surprised I was to begin a new cancer chapter! How secure I had been in my cancer-free existence!
In some ways it is surprising to me that it has been a year, but in other ways it is not. It seems like a lifetime ago that I had a breast, hair in a ponytail, and the "this is how it works when you used to have cancer" attitude. Conversely, it seems like only yesterday I was nauseous, yesterday Aunt Jacque cleaned my room, yesterday I had a PICC line, yesterday Lori rubbed my feet, yesterday I couldn't wait to get out of the hospital, yesterday I was using your stroller as a walker to support my walk around the block. Cancer treatment seems like a parallel life that I recently, somewhat briefly, lived and survived. Scarcely related to the life that I'm trying to lead now.
The other night I went on a walk all by myself, which is something I rarely do. I found myself walking part of the route that we used to shuffle along. I paused on the corner that we often had to pause at to give me a little rest before making the return journey home. I remember the first time you sat in the forward-facing stroller instead of being perched atop in your carseat. You were so quiet, such a quiet little baby, but your legs just wouldn't stop kicking. You were so excited to be facing the world head-on. It must have been quite a different perspective for you, rather than watching the sky and leaves pass overhead from your bucket seat. You were kicking so hard I remember stopping to make sure that you were securely buckled; your mom and I were afraid that you were going to kick right out of that stroller with your excitement. Thanks for being my cancer-kicking buddy.
Spring is starting to show its pretty face around here. Soon the crocuses will be up. They are my favorite springtime flower. Let's go for a walk again soon, okay, and look for some crocus flowers? This time we can walk together because neither of us needs the stroller anymore. I miss our walks.
I love you, Calvin! Happy birthday!
Love always,
xoxoxoxoxo
Aunt Heather
Monday, February 9, 2015
Optimistic
Today my dad and I made another trip to the other town to visit my other oncologists. The driving conditions were perfect: clear roads and overcast sky. The highlight of the road trip entertainment was the electronic over-the-road sign that broadcasts traffic updates. Today it read, "Hey bobblehead stop looking at your phone." We crossed the state and passed under at least three of these electronic signs, all of which said the same thing. That guy or gal has too much fun.
The purpose of this trip was to deliver disks of my recent PET scan and to get their opinions on my continued treatment plan. We first saw Dr. Medical Oncologist. She was thrilled with the clean PET scan result and agreed that it couldn't have been better. She thinks that I should continue to have PET scans every 3-4 months for now, and that I should see her again in 6 months. She also maintains that I should continue the Herceptin+Pertuzumab treatments indefinitely. I asked her about side effects on my heart, or what we should do if my body decides to reject this treatment, and she said that it would have to be pretty bad to get her to quit the treatment. Her2+ cancers (that's mine!) are nasty, so it's better to suffer a bit of heart damage than to risk the potential consequences of ceasing the treatment.
That led me to a question about prognosis. A few people at work have asked me about it, and I haven't known what to tell them. My prognosis is technically "poor" because the best evidence suggests that I had (have?) stage 4 cancer. That's cancer that has spread past its original source into an incurable location. My question for her, then, is whether I should tell people that my prognosis is poor even though I am clearly doing so well and have unproven metastatic lung cancer that has nearly gone away? (I'll discuss the "nearly" part next.) She then looked me in the eye and asked if I wanted her answer based on the previous data, or if I would settle for the word "optimistic". The reason for this cryptic response is because I am on a therapy that has only existed for a year, and I have been on this therapy for its entire existence. There are no previous data points on which to draw that would answer my prognosis question. The previous data points didn't have the awesome treatment that I'm on. Therefore, her expectation and her hope is that I will do better than what the available data would suggest for me. I am the new data point. I therefore opted to decline the technical answer to my prognosis question and accepted the word optimistic. It suits me better, anyway.
Then dad and I took an intermission to inhale our lunch at our favorite falafel joint in the universe. Oh man was it good, but we ate way too fast.
We scurried back to the clinic to meet with Dr. Pulmonary Oncologist. This ended up being every minute worth the drive and the wait! He pulled up images of my chest CT from last February and from the recent scan. The chest CT is always taken at the same time as the PET scan. The difference between the two types of images is that the PET is colored based on the radioactivity that my cells take up, but the chest CT is more like a standard x-ray. So although the PET scan showed completely normal cellular activity, Dr. Pulmonary Oncologist scrutinized the CT images for abnormalities, which he found and showed to me. He put my pre-chemo chest CT on the left, then my January 2015 chest CT on the right. He had used the glowing data from the PET scan to find the suspected cancer nodules on the old chest CT. Then he found the matching image on the recent chest CT. What he pointed out to me is that when you look at the two CTs side by side, you can still see a trace of each nodule. He said that they are less than 90% of what they were and that the extent of their diminution is better than expected. He said that without a biopsy it is still impossible to concluded whether or not they were or are cancer--they could be cancer that has responded to treatment, or they could be my body healing a lung infection or scar tissue from an infection. No matter what, the news remains excellent. He said he doesn't need to see me again unless the pendulum swings back in the other direction; that is, unless the nodules show activity on the PET scan or start to grow again.
I also gave him my email address, because his son is an undergraduate interested in veterinary medicine and gut bacterial communities. I study gut bacterial communities, I have a veterinary pathologist postdoctoral fellow starting in my lab in March, and I have a job opening for a summer student. Small world.
It was another great trip with a whole pile of good news. I hope I can stay on this trajectory for a long while.
The purpose of this trip was to deliver disks of my recent PET scan and to get their opinions on my continued treatment plan. We first saw Dr. Medical Oncologist. She was thrilled with the clean PET scan result and agreed that it couldn't have been better. She thinks that I should continue to have PET scans every 3-4 months for now, and that I should see her again in 6 months. She also maintains that I should continue the Herceptin+Pertuzumab treatments indefinitely. I asked her about side effects on my heart, or what we should do if my body decides to reject this treatment, and she said that it would have to be pretty bad to get her to quit the treatment. Her2+ cancers (that's mine!) are nasty, so it's better to suffer a bit of heart damage than to risk the potential consequences of ceasing the treatment.
That led me to a question about prognosis. A few people at work have asked me about it, and I haven't known what to tell them. My prognosis is technically "poor" because the best evidence suggests that I had (have?) stage 4 cancer. That's cancer that has spread past its original source into an incurable location. My question for her, then, is whether I should tell people that my prognosis is poor even though I am clearly doing so well and have unproven metastatic lung cancer that has nearly gone away? (I'll discuss the "nearly" part next.) She then looked me in the eye and asked if I wanted her answer based on the previous data, or if I would settle for the word "optimistic". The reason for this cryptic response is because I am on a therapy that has only existed for a year, and I have been on this therapy for its entire existence. There are no previous data points on which to draw that would answer my prognosis question. The previous data points didn't have the awesome treatment that I'm on. Therefore, her expectation and her hope is that I will do better than what the available data would suggest for me. I am the new data point. I therefore opted to decline the technical answer to my prognosis question and accepted the word optimistic. It suits me better, anyway.
Then dad and I took an intermission to inhale our lunch at our favorite falafel joint in the universe. Oh man was it good, but we ate way too fast.
We scurried back to the clinic to meet with Dr. Pulmonary Oncologist. This ended up being every minute worth the drive and the wait! He pulled up images of my chest CT from last February and from the recent scan. The chest CT is always taken at the same time as the PET scan. The difference between the two types of images is that the PET is colored based on the radioactivity that my cells take up, but the chest CT is more like a standard x-ray. So although the PET scan showed completely normal cellular activity, Dr. Pulmonary Oncologist scrutinized the CT images for abnormalities, which he found and showed to me. He put my pre-chemo chest CT on the left, then my January 2015 chest CT on the right. He had used the glowing data from the PET scan to find the suspected cancer nodules on the old chest CT. Then he found the matching image on the recent chest CT. What he pointed out to me is that when you look at the two CTs side by side, you can still see a trace of each nodule. He said that they are less than 90% of what they were and that the extent of their diminution is better than expected. He said that without a biopsy it is still impossible to concluded whether or not they were or are cancer--they could be cancer that has responded to treatment, or they could be my body healing a lung infection or scar tissue from an infection. No matter what, the news remains excellent. He said he doesn't need to see me again unless the pendulum swings back in the other direction; that is, unless the nodules show activity on the PET scan or start to grow again.
I also gave him my email address, because his son is an undergraduate interested in veterinary medicine and gut bacterial communities. I study gut bacterial communities, I have a veterinary pathologist postdoctoral fellow starting in my lab in March, and I have a job opening for a summer student. Small world.
It was another great trip with a whole pile of good news. I hope I can stay on this trajectory for a long while.
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