Got good news about the MRI - NOT sarcoma! Still not really sure what the "bump" is, if it's just so much lymphedema it makes it seem solid, or scar tissue, or what. The MRI report doesn't diagnose but does mention myositis and intramuscular edema. My oncologist is going to check with the radiation oncologist to see if he has any suggestions about overcoming the lymphedema, but in the meantime I'm just to keep working with the lymphedema therapists.
On Thursday I started taking a higher dose of lasix (diuretic) for the edema elsewhere in my body, which worked really well - so well that on Saturday I started getting really light-headed. I was losing so much fluid my blood pressure was getting a bit too low! I talked to an on-call doctor, who suggested weighing myself to help figure out when I need to take a lasix - sounds great unless you're traveling like I've been the past few days. Luckily it hasn't worsened too much since stopping - hopefully now that I'm almost done it will cease to be such an issue.
Sunday morning I had a 6:15 flight to Portland (I guess I booked it looking at the arrival time of 10am). After I arrived, I checked into the hotel then went exploring. I didn't think I'd get very far, I still felt pretty weak. But after two breakfasts I felt better. I wandered the Pearl and Alphabet Districts for much of the afternoon. The weather was nice, there were flowers blooming, birds singing, and Portland was really great!
I felt pretty good when I got up yesterday, but after my meeting I decided to head to a coffee shop to work instead of going back to my hotel. The sky had turned gray and it was cold. I tried two different coffee shops in the Hawthorne neighborhood, but just felt cold and had an achy back. Whether that was from bad coffee shop chairs, the neulasta injection, lingering yuckiness from the hypotension, I'm not sure. I finally gave up and drove around some more, looking for a place to warm up and eat dinner.
I still felt bad when I got back to the hotel, and when I got up this morning it just seemed like an effort to figure out how to get to the airport and check in. I drank a liter of water and a monster juice at the airport, which helped, so maybe I was still just really dehydrated. It just shows how easy it is for me to get out of balance right now.
Tuesday, February 14, 2012
Friday, February 10, 2012
Lymphedema
I think I'm moved into a more critical case as far as the lymphedema goes. I haven't gotten much better even after a few weeks of therapy. I spend most of my time with my arm bandaged up, which doesn't help with typing, cooking, washing dishes, showering...you name it.
Yesterday I met with a rep from the Flexitouch company to be measured and start the process to get my own pump. This pump will simulate manual drainage massage that the therapists do, so that I can receive it daily, including when I'm traveling. There are separate pieces that fit over my trunk, chest, shoulder and arm, which connect by tube to a central controller (see http://tactilesystems.com/flexitouch/details.html for a better description and picture). I'm hoping that daily treatment will help get this under control.
Other things I'm trying to do include exercise, including "rebounding" (which in my case is jumping up and down on a $30 jogging trampoline from Fleet Farm), diaphragmatic breathing, all to try to help get the lymph system moving, and an enzyme capsule "Digest Gold" to help break down stuff in my arm. There is also a local doctor who specializes in lymphedema, so I am going to look into making an appointment with her. Lymphedema is often a chronic, life-long problem, so I'm moving on trying to avoid that if at all possible.
Yesterday I met with a rep from the Flexitouch company to be measured and start the process to get my own pump. This pump will simulate manual drainage massage that the therapists do, so that I can receive it daily, including when I'm traveling. There are separate pieces that fit over my trunk, chest, shoulder and arm, which connect by tube to a central controller (see http://tactilesystems.com/flexitouch/details.html for a better description and picture). I'm hoping that daily treatment will help get this under control.
Other things I'm trying to do include exercise, including "rebounding" (which in my case is jumping up and down on a $30 jogging trampoline from Fleet Farm), diaphragmatic breathing, all to try to help get the lymph system moving, and an enzyme capsule "Digest Gold" to help break down stuff in my arm. There is also a local doctor who specializes in lymphedema, so I am going to look into making an appointment with her. Lymphedema is often a chronic, life-long problem, so I'm moving on trying to avoid that if at all possible.
Fourth - and final - chemo!
Just had my fourth and final chemo yesterday! It was fairly uneventful, as far as the infusion went.
Unfortunately, I have a bump in my upper arm, above where I had surgery and radiation for the sarcoma. It appeared around the time of the lymphedema, so I thought it was part of that, but the lymphedema therapists said it was too hard to be lymphedema. I had an ultrasound after chemo yesterday to rule out a blood clot (Kind of funny, I was hoping for a blood clot - unfortunately(?) there wasn't one). I'm scheduled for an MRI today. Worst case is return of the sarcoma. The ultrasound technician said she didn't see anything other than muscle - when I had an ultrasound on the original lump last year, they did see something "different." But could vary by technician, and it's ultrasound which isn't that definitive for things like this which is why I'm having an MRI...so trying not to think too much about it. Yeah, right. So, if you can spare any thoughts and prayers, please send some my way (so weird to ask for this for myself!).
Also, I've developed really bad edema in my legs (from the taxotere?). I took 20mg of lasix last night, that seemed to help. Can't exactly see my ankle bones yet, but my shoes aren't so tight anymore. But all this girly girl wants to wear is sweats, and I worry that if it doesn't go away soon that's all I'll be able to wear.
I'm told that I should start feeling more "normal" in a couple of months (there's the three week cycle from yesterday's chemo, then recovery starts). My birthday is April 24th, and I think my birthday wish is to have enough hair to not have to wear a headcover to my party, and to not have to wear sweatpants.
Unfortunately, I have a bump in my upper arm, above where I had surgery and radiation for the sarcoma. It appeared around the time of the lymphedema, so I thought it was part of that, but the lymphedema therapists said it was too hard to be lymphedema. I had an ultrasound after chemo yesterday to rule out a blood clot (Kind of funny, I was hoping for a blood clot - unfortunately(?) there wasn't one). I'm scheduled for an MRI today. Worst case is return of the sarcoma. The ultrasound technician said she didn't see anything other than muscle - when I had an ultrasound on the original lump last year, they did see something "different." But could vary by technician, and it's ultrasound which isn't that definitive for things like this which is why I'm having an MRI...so trying not to think too much about it. Yeah, right. So, if you can spare any thoughts and prayers, please send some my way (so weird to ask for this for myself!).
Also, I've developed really bad edema in my legs (from the taxotere?). I took 20mg of lasix last night, that seemed to help. Can't exactly see my ankle bones yet, but my shoes aren't so tight anymore. But all this girly girl wants to wear is sweats, and I worry that if it doesn't go away soon that's all I'll be able to wear.
I'm told that I should start feeling more "normal" in a couple of months (there's the three week cycle from yesterday's chemo, then recovery starts). My birthday is April 24th, and I think my birthday wish is to have enough hair to not have to wear a headcover to my party, and to not have to wear sweatpants.
Sunday, February 5, 2012
The Loppet
Today I completed my eighth Team in Training event. It wasn't exactly the event I'd pictured when I signed up for the Team's inaugural cross-country ski event, the City of Lakes Loppet, last September, but I did it.
One reason I signed up for this event was that, as a native Minnesotan who doesn't like winter, for years I've told myself that I should take up more winter recreational activities in order to get out there and enjoy the season. I bought snowshoes a few years ago, but we seldom have enough snow in the Twin Cities to use them (save last year, when I still didn't use them - don't ask me why. Habit? Too busy shoveling and driving extra long commutes after each snowstorm?). So I jumped at the opportunity to learn how to ski, practice regularly, and do it with a great bunch of people. And then we didn't get any snow. And I learned I had breast cancer.
We started "dry land" training in September, then the team moved to Elm Creek, a park with man-made snow in December. I didn't attend these early ski practices due to being overwhelmed, the pneumothorax, the park being 30 miles from my house, an upper respiratory infection complete with fever, and, I distinctly remember one night I didn't go because it was raining.
I finally made it to my first ski practice on January 7th. I had a 100.5 fever, but knew I needed to get out there, and felt it was now or never. I stayed in the practice area, got some instructions, skied back and forth a bit until my body said that's enough, then went inside and gabbed with TNT friend Rachel for another hour (guess I wasn't feeling that bad!) before heading home.
I made it to a few more TNT practices, and a group lesson, before ending up at Wirth Park last weekend. The Loppet was to start at Wirth, so we wanted to ski it before the actual event. I was happy to ski a different venue, especially one closer to home.
Wirth had a 3.5km loop with man-made snow, and those of us with less experience did not ski the whole loop due a big hill. There were plenty of other hills, though, along with a lot of ice, and I gave up after just one loop, three falls, and some lightheadedness (which I attributed to being out of shape until my oncologist reminded me that my hemoglobin is low - it's been hovering around 10). Two friends helped out by walking me and my gear to the car.
Through all this, I was getting a ton of support from the team - notes of encouragement, offers of assistance, you name it. The first time I fell at Wirth, I had to figure out how to get back up (not that easy on skis), and I got offers of help and tips from everyone around me. I thought that the Team helping me get back up on my skis was a good metaphor for my situation at large. (:
That same evening, the Loppet announced that, due to the lack of snow and warm weather, they were changing the course - to entirely within Wirth Park. The Loppet course would be multiple laps of the 3.5km loop mentioned above.
I knew I didn't have the technical skills or fitness level to ski this course, so I was happy to hear from our coaches that Team in Training would switch "our" Loppet to Elm Creek (which had been our Plan B in the event that the Loppet was to be completely cancelled).
What I would do for the actual event was still to be determined, especially after I developed lymphedema in my left arm from the surgeries and radiation. My arm and hand blew up to way beyond their normal size, and my left forearm and hand would cramp up with even the simplest of chores. Just Friday morning, I went to lymphedema therapy. We discussed the option of bandaging my arm, which might interfere with the ski event, but agreed that the most important thing was to get the lymphedema under control. So my arm got wrapped up with multiple rolls of bandage and padding, with the pressure greatest at the hand and lessening all the way up to the armpit, to force the fluid up and out of my hand and arm.
Now my hand and arm were even larger. My fingers were partially wrapped so that, while the therapist had made sure I could still bend my elbow to bring a fork to my mouth, I found I couldn't hold a fork. This morning I borrowed a jacket and mitten that would fit over that big arm (thanks, again, to those awesome teammates), but the ski pole loop would not fit over my hand.
I started out just holding the ski pole, but almost immediately I realized that wasn't going to work since I couldn't grip the pole without pain. I would also find that my hand would slide down the pole so that I'd be gripping it a few inches below the handle (not sure if that's the right word for it, but hopefully you get my idea!). I ended up skiing much of my first lap holding the left pole in my right hand.
I got rid of the left pole after my first lap, and things got much easier. I still fell once or twice, didn't go very fast, and got pooped on the uphills, but I ended up skiing three laps - two of which were accompanied by my good friend Ramona. This equaled about 7km, not quite the distance I'd envisioned at the beginning of the season, but my goal was to just get out there and see what I could do.
After I finished, I stayed and watched the rest of my teammates come in (with some breaks to go inside and warm up by the fire with a warm beverage and a homemade caramel roll). It was just an awesome morning, not just to get out there and do my three laps, but to see everyone else reaching their goals and finishing.
Now that the Loppet is over, I'm sure we'll get some snow. And I'm excited to get out my skis when we do. I may not like winter yet, but I think I can say I like cross-country skiing (at least when it's on an easy course)! (:
One reason I signed up for this event was that, as a native Minnesotan who doesn't like winter, for years I've told myself that I should take up more winter recreational activities in order to get out there and enjoy the season. I bought snowshoes a few years ago, but we seldom have enough snow in the Twin Cities to use them (save last year, when I still didn't use them - don't ask me why. Habit? Too busy shoveling and driving extra long commutes after each snowstorm?). So I jumped at the opportunity to learn how to ski, practice regularly, and do it with a great bunch of people. And then we didn't get any snow. And I learned I had breast cancer.
We started "dry land" training in September, then the team moved to Elm Creek, a park with man-made snow in December. I didn't attend these early ski practices due to being overwhelmed, the pneumothorax, the park being 30 miles from my house, an upper respiratory infection complete with fever, and, I distinctly remember one night I didn't go because it was raining.
I finally made it to my first ski practice on January 7th. I had a 100.5 fever, but knew I needed to get out there, and felt it was now or never. I stayed in the practice area, got some instructions, skied back and forth a bit until my body said that's enough, then went inside and gabbed with TNT friend Rachel for another hour (guess I wasn't feeling that bad!) before heading home.
I made it to a few more TNT practices, and a group lesson, before ending up at Wirth Park last weekend. The Loppet was to start at Wirth, so we wanted to ski it before the actual event. I was happy to ski a different venue, especially one closer to home.
Wirth had a 3.5km loop with man-made snow, and those of us with less experience did not ski the whole loop due a big hill. There were plenty of other hills, though, along with a lot of ice, and I gave up after just one loop, three falls, and some lightheadedness (which I attributed to being out of shape until my oncologist reminded me that my hemoglobin is low - it's been hovering around 10). Two friends helped out by walking me and my gear to the car.
Through all this, I was getting a ton of support from the team - notes of encouragement, offers of assistance, you name it. The first time I fell at Wirth, I had to figure out how to get back up (not that easy on skis), and I got offers of help and tips from everyone around me. I thought that the Team helping me get back up on my skis was a good metaphor for my situation at large. (:
That same evening, the Loppet announced that, due to the lack of snow and warm weather, they were changing the course - to entirely within Wirth Park. The Loppet course would be multiple laps of the 3.5km loop mentioned above.
I knew I didn't have the technical skills or fitness level to ski this course, so I was happy to hear from our coaches that Team in Training would switch "our" Loppet to Elm Creek (which had been our Plan B in the event that the Loppet was to be completely cancelled).
What I would do for the actual event was still to be determined, especially after I developed lymphedema in my left arm from the surgeries and radiation. My arm and hand blew up to way beyond their normal size, and my left forearm and hand would cramp up with even the simplest of chores. Just Friday morning, I went to lymphedema therapy. We discussed the option of bandaging my arm, which might interfere with the ski event, but agreed that the most important thing was to get the lymphedema under control. So my arm got wrapped up with multiple rolls of bandage and padding, with the pressure greatest at the hand and lessening all the way up to the armpit, to force the fluid up and out of my hand and arm.
Now my hand and arm were even larger. My fingers were partially wrapped so that, while the therapist had made sure I could still bend my elbow to bring a fork to my mouth, I found I couldn't hold a fork. This morning I borrowed a jacket and mitten that would fit over that big arm (thanks, again, to those awesome teammates), but the ski pole loop would not fit over my hand.
I started out just holding the ski pole, but almost immediately I realized that wasn't going to work since I couldn't grip the pole without pain. I would also find that my hand would slide down the pole so that I'd be gripping it a few inches below the handle (not sure if that's the right word for it, but hopefully you get my idea!). I ended up skiing much of my first lap holding the left pole in my right hand.
I got rid of the left pole after my first lap, and things got much easier. I still fell once or twice, didn't go very fast, and got pooped on the uphills, but I ended up skiing three laps - two of which were accompanied by my good friend Ramona. This equaled about 7km, not quite the distance I'd envisioned at the beginning of the season, but my goal was to just get out there and see what I could do.
After I finished, I stayed and watched the rest of my teammates come in (with some breaks to go inside and warm up by the fire with a warm beverage and a homemade caramel roll). It was just an awesome morning, not just to get out there and do my three laps, but to see everyone else reaching their goals and finishing.
Now that the Loppet is over, I'm sure we'll get some snow. And I'm excited to get out my skis when we do. I may not like winter yet, but I think I can say I like cross-country skiing (at least when it's on an easy course)! (:
Good News!
This post is horribly overdue. The reasons why may be the subject of a future blog post.
January 20th I received round three of four rounds of chemo. You may recall that I'm doing chemo prior to surgery, and halfway through I was going to have an MRI to assess how the tumor was responding to chemo - that way, if the tumor wasn't shrinking I could receive a different chemo drug combination.
So, a few days prior to receiving round three I had my MRI. On the 20th, I met with my doctor prior to the chemo, to learn that, not only had the tumor responded to chemo by shrinking, it had shrunk to essentially NOTHING! There was no enhancement (taking up of contrast by the tumor's own network of blood vessels, the red flag in the original MRI), no measurable size, just some scarring where the tumor had previously been.
What does this mean as far as treatment goes? No changes - I stay on the same drugs, will still receive four rounds, still have surgery (they'll remove the same amount of tissue that they would have had we done surgery prior to chemo), still have about seven weeks of radiation. But my prognosis is just that much better.
I continue to feel good through the chemo, with my biggest complaint being the bone pain from the neulasta shot. It's been getting a bit tough mentally - even with the excellent news from the MRI, as we turn the corner from winter and I can look forward to spring, I have a lot of treatment ahead of me yet. I'm just ready to be done - ready to put it all behind me, to have weeks without doctor appointments, for my hair to grow back. To be done and go back to normal.
January 20th I received round three of four rounds of chemo. You may recall that I'm doing chemo prior to surgery, and halfway through I was going to have an MRI to assess how the tumor was responding to chemo - that way, if the tumor wasn't shrinking I could receive a different chemo drug combination.
So, a few days prior to receiving round three I had my MRI. On the 20th, I met with my doctor prior to the chemo, to learn that, not only had the tumor responded to chemo by shrinking, it had shrunk to essentially NOTHING! There was no enhancement (taking up of contrast by the tumor's own network of blood vessels, the red flag in the original MRI), no measurable size, just some scarring where the tumor had previously been.
What does this mean as far as treatment goes? No changes - I stay on the same drugs, will still receive four rounds, still have surgery (they'll remove the same amount of tissue that they would have had we done surgery prior to chemo), still have about seven weeks of radiation. But my prognosis is just that much better.
I continue to feel good through the chemo, with my biggest complaint being the bone pain from the neulasta shot. It's been getting a bit tough mentally - even with the excellent news from the MRI, as we turn the corner from winter and I can look forward to spring, I have a lot of treatment ahead of me yet. I'm just ready to be done - ready to put it all behind me, to have weeks without doctor appointments, for my hair to grow back. To be done and go back to normal.
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