This week, my Facebook feed has been filled with tributes to David Bowie as the world mourns the passing of this talented man. He was an icon of music and style, and his work transcended generations. He leaves an amazing body of art, music and film that he shared with the world. His lyrics encouraged us all to turn and face the strange, and it was reassuring to be told that we could all be heroes, even if just for one day.
It was not lost on me that cancer was the culprit. Of course, we don't know just what kind he was battling as he chose to keep the news of his illness very private. I imagine, if I were in the public eye as he was, it might be more appealing to keep this news to one's closest inner circle. As an artist, he may have wanted his most recent work to stand on it's own merits, without the soft whisper of melancholy coloring people's view of his music. I do not really know why he may have chosen the path that he did. I just know that I could not follow that path.
I have been thanked by many people for sharing my journey so openly, but here's the thing. I could not do this by myself. I simply couldn't. Do you know how much you all help me? Every kind word, every text, email or card, every comment of encouragement, and every hug is so profoundly helpful. Every phone call or gift reminds me that I have so many people in my corner. Every invitation to spend time with you reminds me that life can and must continue as usual. Every meal offered provides sustenance to both body and spirit, not just for me, but for my family as well.
As we head in for my next treatment tomorrow, I am buoyed up by the knowledge that we are not alone. We do not heal in isolation, but in community. Thanks to all the everyday heroes out there for having our backs. Much love to you all.
https://www.youtube.com/watch?v=bsYp9q3QNaQ
Wednesday, January 13, 2016
Saturday, January 9, 2016
The Healing Journey Begins
And so it begins. I had my first chemo infusions yesterday. This was a day for all four drugs I'm getting, so Lanny and I showed up at the U of M Masonic Center at 8 AM and ready for action accompanied by every manner of electronic device possible to while away the hours. This first visit was a temporary location for us, and we were there only because they did not have room for me at the oncology clinic I will normally go to. They didn't want to waste a single day before getting me started.
The first day always takes longer than normal because they have to allow slower infusions and watch periods in between drugs to make sure that you do not have an adverse reaction. They also do premeds before each infusion to help you tolerate the drugs better such as Benadryl and steroids. I am happy to report I did not have any adverse reactions, except for about 10 minutes where my mouth felt like I had been walking through the Sahara desert for hours with no water.
Lanny kept me company all the while and brought in Chinese food so that I did not have to eat the hospital grade "turkey" sandwich that was offered. I kept up on work emails, texted with a few friends, and napped a fair bit (I defy you to stay awake when you've had IV Benadryl). We finally finished about 3:00 still feeling good. I felt well enough to go our for a walk with Jasper when he got home, and I even did a bunch of laundry. Steroids are amazing things.
I, of course, am not leaving things up to just the chemo. Cancer cells can't proliferate in healthy terrain, and they can't thrive in the midst of Killer T-Cells. So, I'm eating all manner of vegetables and exercising as much as I can. I felt fine this morning so I went to a yoga class, and I'm now drinking an awesome juice concoction made with the ingredients below (romaine, kale, carrots, beets, ginger, half apple, tangerine, lemon):
I do feel a palpable presence in my lungs, and the nodes and spots seem to be pressing on certain areas. I'm hopeful that, as the chemo begins to work it's terrible magic, it will be something I can feel changing. At the very least, I seem to be coughing less than I was previously, so maybe it is already starting.
The results from round one: DeAnn: 1 Monster: 0
The first day always takes longer than normal because they have to allow slower infusions and watch periods in between drugs to make sure that you do not have an adverse reaction. They also do premeds before each infusion to help you tolerate the drugs better such as Benadryl and steroids. I am happy to report I did not have any adverse reactions, except for about 10 minutes where my mouth felt like I had been walking through the Sahara desert for hours with no water.
Lanny kept me company all the while and brought in Chinese food so that I did not have to eat the hospital grade "turkey" sandwich that was offered. I kept up on work emails, texted with a few friends, and napped a fair bit (I defy you to stay awake when you've had IV Benadryl). We finally finished about 3:00 still feeling good. I felt well enough to go our for a walk with Jasper when he got home, and I even did a bunch of laundry. Steroids are amazing things.
I, of course, am not leaving things up to just the chemo. Cancer cells can't proliferate in healthy terrain, and they can't thrive in the midst of Killer T-Cells. So, I'm eating all manner of vegetables and exercising as much as I can. I felt fine this morning so I went to a yoga class, and I'm now drinking an awesome juice concoction made with the ingredients below (romaine, kale, carrots, beets, ginger, half apple, tangerine, lemon):
I do feel a palpable presence in my lungs, and the nodes and spots seem to be pressing on certain areas. I'm hopeful that, as the chemo begins to work it's terrible magic, it will be something I can feel changing. At the very least, I seem to be coughing less than I was previously, so maybe it is already starting.
The results from round one: DeAnn: 1 Monster: 0
Wednesday, January 6, 2016
The Next Steps
We are so deeply grateful for the outpouring of love and support that we have experienced in the past few days. I wish I had the time and energy to respond to each one of you individually, but I hope you know that we read and appreciate every message. I am beyond fortunate to have so many wonderful souls in my life. Thank you.
I forget that most people have never been in cancer treatment world, and I have been asked a lot of questions as to what this treatment might include and how in the world can I have breast cancer in my lungs? I admit it is highly ironic that I do not have any sign of cancer in my remaining left breast, but I do have breast cancer in a whole bunch of other places. Here's how it works for those of you who like details.
In my first go-round, I was Stage III because there was not evidence that it had spread beyond the lymph nodes. However, cancer cells that break off from the primary tumor may be microscopic and can travel through the lymph system of the body. For breast cancers, it is very common for them to move (metastasize) to the lungs, liver, and bones. Any time a primary cancer has moved to a different part of the body, this is considered Stage IV cancer. It is considered incurable, but that doesn't mean it is not possible to go into remission and achieve NED status (No Evidence of Disease). This is the goal, and we have a new drug weapon now that we did not have the last time I went through treatment.
The arsenal of monster-fighting weapons will include the following treatment regimen.
Starting on Friday, and then moving to Thursdays, I will get 12 weekly infusions of Taxol (a chemo drug I had last time and tolerated very well). Doing it once a week means I can get a smaller dose and it's a lot easier to handle. All the usual chemo side effects apply. Hats and scarves will likely be in my future.
On week 1, 4, 7 and 10 I will also get two additional drugs, Herceptin and Perjeta. My cancer is HER2 positive which means that it tests positive for a protein called human epidermal growth factor receptor 2. HER2 promotes the growth of cancer cells and about 20% of breast cancers have this gene mutation that makes an excess of the HER2 protein. While having lots of these HER2 proteins means cancer spreads fast, it also creates an Achilles heel that Herceptin and Perjeta can target. These two drugs are monoclonal antibodies that target that specific protein and block its growth. I had Herceptin last time and now we have this new drug called Perjeta to add in to the mix. I wish I could share with you just how confident my doctors are about this treatment. I've talked to a lot of cancer doctors in my life, and I've certainly never heard them be so excited about something.
Once those first 12 weeks are up, I will continue to get the Herceptin and Perjeta every three weeks for another three months. The side effects from these two drugs are much less than from the Taxol, and I had no issues when I was on Herceptin last time. I will also be getting a once a month injection of a drug called Xgiva which will help my bones to stay strong and will deal with the cancer in the bones more effectively.
Once those three months are done, we will assess the results through more scans with the goal being NED! Hopefully, I will be able to just go on a hormone therapy at that point and take a pill every day to keep it in check. I may never fully be rid of my monster, but we can turn it into a little tiny mouse that I just have to get after once in awhile.
I forget that most people have never been in cancer treatment world, and I have been asked a lot of questions as to what this treatment might include and how in the world can I have breast cancer in my lungs? I admit it is highly ironic that I do not have any sign of cancer in my remaining left breast, but I do have breast cancer in a whole bunch of other places. Here's how it works for those of you who like details.
In my first go-round, I was Stage III because there was not evidence that it had spread beyond the lymph nodes. However, cancer cells that break off from the primary tumor may be microscopic and can travel through the lymph system of the body. For breast cancers, it is very common for them to move (metastasize) to the lungs, liver, and bones. Any time a primary cancer has moved to a different part of the body, this is considered Stage IV cancer. It is considered incurable, but that doesn't mean it is not possible to go into remission and achieve NED status (No Evidence of Disease). This is the goal, and we have a new drug weapon now that we did not have the last time I went through treatment.
The arsenal of monster-fighting weapons will include the following treatment regimen.
Starting on Friday, and then moving to Thursdays, I will get 12 weekly infusions of Taxol (a chemo drug I had last time and tolerated very well). Doing it once a week means I can get a smaller dose and it's a lot easier to handle. All the usual chemo side effects apply. Hats and scarves will likely be in my future.
On week 1, 4, 7 and 10 I will also get two additional drugs, Herceptin and Perjeta. My cancer is HER2 positive which means that it tests positive for a protein called human epidermal growth factor receptor 2. HER2 promotes the growth of cancer cells and about 20% of breast cancers have this gene mutation that makes an excess of the HER2 protein. While having lots of these HER2 proteins means cancer spreads fast, it also creates an Achilles heel that Herceptin and Perjeta can target. These two drugs are monoclonal antibodies that target that specific protein and block its growth. I had Herceptin last time and now we have this new drug called Perjeta to add in to the mix. I wish I could share with you just how confident my doctors are about this treatment. I've talked to a lot of cancer doctors in my life, and I've certainly never heard them be so excited about something.
Once those first 12 weeks are up, I will continue to get the Herceptin and Perjeta every three weeks for another three months. The side effects from these two drugs are much less than from the Taxol, and I had no issues when I was on Herceptin last time. I will also be getting a once a month injection of a drug called Xgiva which will help my bones to stay strong and will deal with the cancer in the bones more effectively.
Once those three months are done, we will assess the results through more scans with the goal being NED! Hopefully, I will be able to just go on a hormone therapy at that point and take a pill every day to keep it in check. I may never fully be rid of my monster, but we can turn it into a little tiny mouse that I just have to get after once in awhile.
Tuesday, January 5, 2016
Caught by the Monster
Well.
I'm pretty sure that starting a post with the word "well" is not considered to be stellar prose, but sometimes, words fail us. Sometimes we discover that we are not nearly as strong as we think we are. Sometimes we are reminded that life isn't as fair as we want it to be. Sometimes, we can feel the monster that has been chasing us getting ever so close. Sometimes, the monster catches us.
The monster caught me.
The Tuesday before Christmas the nagging cough that had been plaguing me for weeks escalated into difficulty breathing. A trip to the ER confirmed that the asthma diagnosis I had been given just 10 days earlier was definitely not asthma. A chest x-ray quickly revealed the truth. I had enlarged nodes in my lungs and spots in both lungs of various sizes - spots that were consistent with metastatic breast cancer. The monster was back, and it had colonized new territory.
A whirlwind of tests and scans followed including two CT scans which also showed lesions on my liver. Additional PET Scans and a liver biopsy confirmed what we had all fully come to expect. It's the very same cancer I started out with eight years ago. It just found some new terrain it liked, including a spot on my hip bone and a spot on one of my lumbar vertebrae, and my immune system just couldn't keep up. I'm pretty proud of my white blood cells for doing so well for so many years. But even the best defenses can get overwhelmed by the monster. So, it's time to call in the big guns again. Chemotherapy.
Those of you who know me well are aware that this is the part where I attempt to find the positive side of things. But, the thing is, I do have an awful lot of positives. I have an amazing network of support - Lanny and Jasper, my Mom, and so many of you who have stepped up and said, "Just let us know what you need." I have a totally supportive work environment. I am, in all other respects, very healthy. My breathing is strong again. I have good insurance. I have a yoga and meditation practice that keeps me clear headed and grateful for each day. And I have the advances of medical science in my corner with, what my fabulous oncologist calls, "some amazing new drugs."
I had a port installed today, and I have my first infusion on Friday. I used to have a Caring Bridge site, but since I can't quite remember how to access it to make more posts, I've decided to resurrect my blog. It feels like the right place to share the journey anyway, because, as awesome as Caring Bridge is, it's meant to be a place to share health information. And I am so much more than my cancer. My cancer is simply a part of me. I have a lot more to talk about than cancer. Granted, it may dominate the conversation for awhile, and I won't pretend that I'm not concerned, and I still wish I didn't have to do this, but I don't plan to go anywhere anytime soon.
So, I guess sometimes we do find the words. Sometimes we discover that we are a lot stronger than we thought. Sometimes, we discover that life is unfair and messy, but also beautiful and generous. Sometimes, we turn around and face the monster, and when we step out of the shadows into the full light of day, we discover that the monster loses its fangs and claws. Sometimes we grab hold of the monster and decide to tame it. I think we can do it.
I'm pretty sure that starting a post with the word "well" is not considered to be stellar prose, but sometimes, words fail us. Sometimes we discover that we are not nearly as strong as we think we are. Sometimes we are reminded that life isn't as fair as we want it to be. Sometimes, we can feel the monster that has been chasing us getting ever so close. Sometimes, the monster catches us.
The monster caught me.
The Tuesday before Christmas the nagging cough that had been plaguing me for weeks escalated into difficulty breathing. A trip to the ER confirmed that the asthma diagnosis I had been given just 10 days earlier was definitely not asthma. A chest x-ray quickly revealed the truth. I had enlarged nodes in my lungs and spots in both lungs of various sizes - spots that were consistent with metastatic breast cancer. The monster was back, and it had colonized new territory.
A whirlwind of tests and scans followed including two CT scans which also showed lesions on my liver. Additional PET Scans and a liver biopsy confirmed what we had all fully come to expect. It's the very same cancer I started out with eight years ago. It just found some new terrain it liked, including a spot on my hip bone and a spot on one of my lumbar vertebrae, and my immune system just couldn't keep up. I'm pretty proud of my white blood cells for doing so well for so many years. But even the best defenses can get overwhelmed by the monster. So, it's time to call in the big guns again. Chemotherapy.
Those of you who know me well are aware that this is the part where I attempt to find the positive side of things. But, the thing is, I do have an awful lot of positives. I have an amazing network of support - Lanny and Jasper, my Mom, and so many of you who have stepped up and said, "Just let us know what you need." I have a totally supportive work environment. I am, in all other respects, very healthy. My breathing is strong again. I have good insurance. I have a yoga and meditation practice that keeps me clear headed and grateful for each day. And I have the advances of medical science in my corner with, what my fabulous oncologist calls, "some amazing new drugs."
I had a port installed today, and I have my first infusion on Friday. I used to have a Caring Bridge site, but since I can't quite remember how to access it to make more posts, I've decided to resurrect my blog. It feels like the right place to share the journey anyway, because, as awesome as Caring Bridge is, it's meant to be a place to share health information. And I am so much more than my cancer. My cancer is simply a part of me. I have a lot more to talk about than cancer. Granted, it may dominate the conversation for awhile, and I won't pretend that I'm not concerned, and I still wish I didn't have to do this, but I don't plan to go anywhere anytime soon.
So, I guess sometimes we do find the words. Sometimes we discover that we are a lot stronger than we thought. Sometimes, we discover that life is unfair and messy, but also beautiful and generous. Sometimes, we turn around and face the monster, and when we step out of the shadows into the full light of day, we discover that the monster loses its fangs and claws. Sometimes we grab hold of the monster and decide to tame it. I think we can do it.
Sunday, August 8, 2010
I Am Climbing Up This Hill
I am climbing up this hill. And I don't know when I will reach the top.
But it's no good standing still, and I will get there if I just don't stop.
That's a song lyric I started writing on my ride today as I was at around mile 45 of a 60 mile day. I needed a lot of reminders right about then. Maybe if I hadn't done 50 miles the day before, and maybe if it wasn't 92 degrees with a heat index of 103, the hills would not have seemed quite so challenging. There were other physical challenges as well, but I did vow not to complain, so I won't venture into a laundry list of what they were, but just as I would be feeling pretty low, a support car would drive past with yells of "You're doing great! Keep it up! Pedal power!" And then I would remember all the people who need the help of the organizations we were funding and the reason I was riding.
I am not as fast as Lanny, but he waited for me so that we could ride the last two miles in together. As we crossed the finish line there was a huge crowd of cheering volunteers who had all worked hard for two days to keep the riders fed, hydrated and safe. I remembered at that moment that just three years ago at this time, I was starting chemotherapy with no real idea of what was ahead of me. Tears began streaming down my face when I recalled all that we had been through together three years ago, and all that we had been through over those two days, and all the many people who have supported us along the way. Even though we are individual riders who all have our challenges and we have to get to the finish line under our own power, none of us are alone on this ride, and there is support at every turn if you just take advantage of it.
That's why I did this ride. Ride on my friends, ride on!
But it's no good standing still, and I will get there if I just don't stop.
That's a song lyric I started writing on my ride today as I was at around mile 45 of a 60 mile day. I needed a lot of reminders right about then. Maybe if I hadn't done 50 miles the day before, and maybe if it wasn't 92 degrees with a heat index of 103, the hills would not have seemed quite so challenging. There were other physical challenges as well, but I did vow not to complain, so I won't venture into a laundry list of what they were, but just as I would be feeling pretty low, a support car would drive past with yells of "You're doing great! Keep it up! Pedal power!" And then I would remember all the people who need the help of the organizations we were funding and the reason I was riding.
I am not as fast as Lanny, but he waited for me so that we could ride the last two miles in together. As we crossed the finish line there was a huge crowd of cheering volunteers who had all worked hard for two days to keep the riders fed, hydrated and safe. I remembered at that moment that just three years ago at this time, I was starting chemotherapy with no real idea of what was ahead of me. Tears began streaming down my face when I recalled all that we had been through together three years ago, and all that we had been through over those two days, and all the many people who have supported us along the way. Even though we are individual riders who all have our challenges and we have to get to the finish line under our own power, none of us are alone on this ride, and there is support at every turn if you just take advantage of it.
That's why I did this ride. Ride on my friends, ride on!
Thursday, August 5, 2010
I am SO not ready. But that's OK.
This weekend is the Hartford Breast Cancer ride to raise money to help breast cancer patients and to fund further research for a cure. Saturday, we'll be riding about 52 miles, and Sunday about 60 miles. I have not biked more than 50 miles in a single day since I was in my 20s. And I have not biked as much this summer (not anywhere near as much) as I should have to prepare for this. In fact, my longest ride all summer was 35 miles.
I have a feeling that I will be OK on Saturday, but that bicycle seat will feel pretty darned hard on Sunday morning! But you know what? This should be a breeze compared to chemotherapy and surgeries. There are women who will be doing this ride who are in the midst of treatment right now. If they can do it, I sure as heck am not going to complain. And if I do, you have permission to chide me mercilessly.
I'm within $100.00 of my fund-raising goal, and our team is within about $300.00 of our team goal! Thanks to everyone who has donated so far! Your support is very much appreciated. I will try to remember your words of encouragement when I'm grinding gears up a long hill into the wind!
Go Team Lucky Life!
Wednesday, May 12, 2010
The Training Begins
OK! I am making a resolution tonight, that beginning tomorrow morning I will begin training for my 150 mile fundraising bike ride this August! I figure I need to keep myself honest by actually reporting on my progress via this blog. If I just resolve to do it in my head, it will never happen. I need the pressure of actually telling people that I'm going to do it!
I rode 10 miles last weekend, but I need to start doing that on a pretty regular basis and getting some 20+ mile rides in soon or I'll have one tired little butt come August.
I know I'm just not disciplined enough and don't actually care enough to actually get up and ride in the morning (plus it is still kind of cold), but I figure I can get up 15 minutes early to do some squats every morning to get those quads in better shape.
So, tomorrow, I will resolve to get up just a bit early and do 100 squats and 20 pushups. It's not much, but hey, we have to start somewhere, right? Honestly, the getting up 15 minutes early part will be the biggest challenge for me. I do love my sleep.
I rode 10 miles last weekend, but I need to start doing that on a pretty regular basis and getting some 20+ mile rides in soon or I'll have one tired little butt come August.
I know I'm just not disciplined enough and don't actually care enough to actually get up and ride in the morning (plus it is still kind of cold), but I figure I can get up 15 minutes early to do some squats every morning to get those quads in better shape.
So, tomorrow, I will resolve to get up just a bit early and do 100 squats and 20 pushups. It's not much, but hey, we have to start somewhere, right? Honestly, the getting up 15 minutes early part will be the biggest challenge for me. I do love my sleep.
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