Hey everybody...
We are back in Bozeman and getting our heads around what to do next. This week we received the final pathology report and have a better idea of what the next few months will look like for us. It's nice to have the surgery in the rearview mirror and heading towards the next step.
I am still laid up but getting stronger all the time. It's frustrating to be so dependent on others for simple tasks such as combing my hair, driving, and opening medicine bottles. I am hoping that in a few weeks I will have all of my movement back. I am planning to be back at work on Monday. We will see how it goes.
This week we learned that those pesky lymph nodes caused more of a problem than we had thought. The surgeon removed 15 lymph nodes from the right side, with 4 testing positive for cancer. This was a surprise for all of us. Almost everyone on the team was assuming I would be at stage 1, since the tumor itself was so small (1 cm) and no positive nodes showed up on the MRI. Personally, I felt that stage 1 would be a nice reward for my diligence and early screening. It was a nice fantasy while it lasted.
No positive nodes would leave me at stage 1. If I had 1 to 3 positive nodes, I would be at stage 2. But that 4th node bumps me right over into stage 3. It's an arbitrary line that surgeons have drawn in the sand. And our surgeon was very reassuring that it is still very manageable. But still, I really do not care to be at stage 3 when there are only 4 total stages for this ludicrous disease.
This changes the game plan for us for the next few months. My oncologist had thought I might be able to get away with no chemo, or at most do a "gentle" regimen of CMF, which would make me tired, but wouldn't make my hair fall out or cause nausea. Instead, I am now scheduled for 4 months of dose dense treatment of TAC. TAC is the "big gun" with the side effects of complete hair loss, nausea, and fatigue. I will probably start about the third week of August and go every other week until the end of November. After that, it's daily radiation for 6 weeks. Hopefully. this ordeal will be over sometime in January of 2011.
Everyone has been so kind to us and have asked how they can help. Today we sat down and did some planning and decided that visits and meals would be 2 practical things that people could do.
We love having people over to our house. It really lifts our spirits to hear what's going on in the "non-cancer" world and to just connect with people. Please drop by and visit if you can. It doesn't take much to put on the teakettle and chat for a bit. Dinners are most welcome too. You could double our pleasure by bringing dinner and staying to enjoy it with us. We would be happy to have you.
Our diet has become a bit funky lately. We have become gluten-free vegans. (No meat, no dairy, no wheat.) This will serve to make us terribly unpopular as dinner guests, I fear. If you want to make a meal, but are stumped on what to make, feel free to call or email and we can give you some ideas.
Peace,
Susan
Saturday, July 31, 2010
Wednesday, July 28, 2010
How We Found It - Part 1
I thought I should write a post to give the backstory of how we got here. I thought it would be helpful for my "sistas" out there to know. I'm especially thinking my younger cousin A could use this information.
Where to begin...
Because of my mom's history of breast cancer, I have been getting mammograms since I was 22. From 22 to 35, I had a mammo about every 4 to 5 years. Then at 35 I started going every year.
The problem with mammos is that they don't see everything. In fact, they miss about 20% of tumors. My breast tissue was very dense, which mimics the look of tumor tissue. In addition, because my tissue was very lumpy, self-exams were never effective. I would joke that you could park a Mac truck in there and I would never know. Prior to being diagnosed, the radiologists couldn't see the tumor on the mammogram, nor could anyone feel it. It really was a fluke that we caught it at all.
I went for my annual mammogram in December of 2009. During the exam, the radiologist saw something on the left that looked suspicious and recommended we take a look with ultrasound . "While we're at it, let's look at the right side too" he said. The ultrasound (us) showed nothing on the left, but it did pick up the 1 cm tumor on the right. Had he not thought to look on both sides, I would still be walking around with cancer in my body, completely oblivious to any danger. So I'm grateful to Dr. R for catching it.
The tumor was biopsied in January 2010. But the radiologist who did the biopsy missed the spot. The lab results showed that the spot was benign. This wasn't a surprise to us, since we were very optimistic that everything was just fine.
In December, Dr. R had strongly recommended that I get an MRI. Family history plus dense tissue were his main reasons. My insurance refused to cover it, however. At this point, I could have dropped it and decided to not press it any further. But I couldn't shake the feeling that I needed to get this done. I met with an oncologist on February, Dr. H. He wrote a letter to my insurance which persuaded them to cover the half of the cost.
Even with the insurance, the cost to us would be $1500. Brett and I went back and forth on if I should do it or not. Everything we read told us that false positives were common MRI results for young women with dense tissue. We were worried that we would be throwing money away just to put myself through more biopsies with benign results.
Finally, we decided that we should do it just to get a baseline image. Then we could repeat it in 5 years if needed. It was a tough choice. At the time, I had no idea what it would lead to.
I had the MRI done on March 6th. The tumor on the right side showed up again, along with a smaller one on the right and a smaller one on the left. We went on our spring break to Seattle and met with the radiologist when we came back.
This fellow was different than the other radiologists we had worked with. He didn't want to answer our questions and was very defensive when we questioned his recommendation to repeat the biopsy. We were operating from the perspective that everything was fine... we had a negative biopsy result from January, right? So why should we go through it again?
The staff at the Bozeman cancer center didn't have a protocol for dealing with this specific situation. In April, I met with a surgeon, an oncologist, and another radiologist and heard 3 different opinions on what we should do next. It was very, very frustrating and confusing.
After talking with my dad about what was happening, he recommended we go to Mayo Clinic, or a similar facility for follow-up care. So in May, we went to the Seattle Cancer Care Alliance.
Where to begin...
Because of my mom's history of breast cancer, I have been getting mammograms since I was 22. From 22 to 35, I had a mammo about every 4 to 5 years. Then at 35 I started going every year.
The problem with mammos is that they don't see everything. In fact, they miss about 20% of tumors. My breast tissue was very dense, which mimics the look of tumor tissue. In addition, because my tissue was very lumpy, self-exams were never effective. I would joke that you could park a Mac truck in there and I would never know. Prior to being diagnosed, the radiologists couldn't see the tumor on the mammogram, nor could anyone feel it. It really was a fluke that we caught it at all.
I went for my annual mammogram in December of 2009. During the exam, the radiologist saw something on the left that looked suspicious and recommended we take a look with ultrasound . "While we're at it, let's look at the right side too" he said. The ultrasound (us) showed nothing on the left, but it did pick up the 1 cm tumor on the right. Had he not thought to look on both sides, I would still be walking around with cancer in my body, completely oblivious to any danger. So I'm grateful to Dr. R for catching it.
The tumor was biopsied in January 2010. But the radiologist who did the biopsy missed the spot. The lab results showed that the spot was benign. This wasn't a surprise to us, since we were very optimistic that everything was just fine.
In December, Dr. R had strongly recommended that I get an MRI. Family history plus dense tissue were his main reasons. My insurance refused to cover it, however. At this point, I could have dropped it and decided to not press it any further. But I couldn't shake the feeling that I needed to get this done. I met with an oncologist on February, Dr. H. He wrote a letter to my insurance which persuaded them to cover the half of the cost.
Even with the insurance, the cost to us would be $1500. Brett and I went back and forth on if I should do it or not. Everything we read told us that false positives were common MRI results for young women with dense tissue. We were worried that we would be throwing money away just to put myself through more biopsies with benign results.
Finally, we decided that we should do it just to get a baseline image. Then we could repeat it in 5 years if needed. It was a tough choice. At the time, I had no idea what it would lead to.
I had the MRI done on March 6th. The tumor on the right side showed up again, along with a smaller one on the right and a smaller one on the left. We went on our spring break to Seattle and met with the radiologist when we came back.
This fellow was different than the other radiologists we had worked with. He didn't want to answer our questions and was very defensive when we questioned his recommendation to repeat the biopsy. We were operating from the perspective that everything was fine... we had a negative biopsy result from January, right? So why should we go through it again?
The staff at the Bozeman cancer center didn't have a protocol for dealing with this specific situation. In April, I met with a surgeon, an oncologist, and another radiologist and heard 3 different opinions on what we should do next. It was very, very frustrating and confusing.
After talking with my dad about what was happening, he recommended we go to Mayo Clinic, or a similar facility for follow-up care. So in May, we went to the Seattle Cancer Care Alliance.
Friday, July 23, 2010
Out of the hospital
I just came "home" from UW hospital. I'm so glad we rented a vacation house, as it's comforting to be in a house setting.
I am physically sore. I feel like I've been hit by a Mac truck. My chest looks deformed and mutilated. I'm emotionally exhausted and feeling weak. It's taking every ounce of strength I have to not curl up into a fetal position and just cry and cry. The enormity of the loss is overwhelming. Great. As I'm typing this I'm starting to cry. So much for that idea.
Why did there have to be cancer in the lymph nodes? I kept holding on to the hope that this wouldn't be the case. But I seem to keep falling into the wrong side of the odds at almost every turn in this journey. I'm really scared about what might happen next. When I think of my life, I see myself living a long, productive life. Cancer isn't part of that plan.
Tomorrow we will start driving back to Montana. We will stay in Spokane tomorrow night and break the trip into 2 days.
My support team has been amazing. Brett is so kind. Gracie is so sweet and put up decorations in my room. And Aunt Carol is our "Ace in the Hole." She knows just what to do and is writing down everything that happens because I can't remember anything the doctors and nurses tell me.
This is all I can write for today. We will be home in Bozeman on Sunday night. So perhaps I will have more news on Monday.
Love,
Susan
I am physically sore. I feel like I've been hit by a Mac truck. My chest looks deformed and mutilated. I'm emotionally exhausted and feeling weak. It's taking every ounce of strength I have to not curl up into a fetal position and just cry and cry. The enormity of the loss is overwhelming. Great. As I'm typing this I'm starting to cry. So much for that idea.
Why did there have to be cancer in the lymph nodes? I kept holding on to the hope that this wouldn't be the case. But I seem to keep falling into the wrong side of the odds at almost every turn in this journey. I'm really scared about what might happen next. When I think of my life, I see myself living a long, productive life. Cancer isn't part of that plan.
Tomorrow we will start driving back to Montana. We will stay in Spokane tomorrow night and break the trip into 2 days.
My support team has been amazing. Brett is so kind. Gracie is so sweet and put up decorations in my room. And Aunt Carol is our "Ace in the Hole." She knows just what to do and is writing down everything that happens because I can't remember anything the doctors and nurses tell me.
This is all I can write for today. We will be home in Bozeman on Sunday night. So perhaps I will have more news on Monday.
Love,
Susan
Thursday, July 22, 2010
Out of surgery
Today is Thursday the 22nd. I had the double mastectomy yesterday, and am still at the hospital healing up and trying to find the right combination of pain meds. I don't need to worry about becoming a morphine addict any time soon, as it makes me break out in a rash. Not fun.
The full pathology report won't be available for about 4 days. At that point we will have a better idea of the stage of the cancer. Unfortunately, the sentinel nodes on the right side were cancerous, so they had to take a group axillary nodes from the right side. In practical terms, this means that I can no longer be at Stage 1. It's a huge disappointment. It probably means I will need an aggressive chemotherapy cocktail with radiation to follow.
I haven't really processed all of this yet. As of right now, I am calm and in good spirits. If I start thinking too far ahead into the future, I will be overwhelmed. All I know is the "now." Now I am writing to friends and family. After this, I will watch some fluffy TV show and then get some sleep.
There is so much more I could say, but I'm starting to feel groggy from the meds. I will sign off now and write more as I can.
Love,
Susan
The full pathology report won't be available for about 4 days. At that point we will have a better idea of the stage of the cancer. Unfortunately, the sentinel nodes on the right side were cancerous, so they had to take a group axillary nodes from the right side. In practical terms, this means that I can no longer be at Stage 1. It's a huge disappointment. It probably means I will need an aggressive chemotherapy cocktail with radiation to follow.
I haven't really processed all of this yet. As of right now, I am calm and in good spirits. If I start thinking too far ahead into the future, I will be overwhelmed. All I know is the "now." Now I am writing to friends and family. After this, I will watch some fluffy TV show and then get some sleep.
There is so much more I could say, but I'm starting to feel groggy from the meds. I will sign off now and write more as I can.
Love,
Susan
Sunday, July 18, 2010
Wagons Ho!
Sunday morning, July 18th. We are all packed and ready to go. I realize I have been an absent blogger, so I'll give the latest update in a nutshell.
The past few weeks have been a flurry of activity as we have been preparing for this. Thanks to the help of some amazing friends, our master bedroom is now painted! We moved back into it this Wednesday and are happy to be back in our own space.
I can't say that I'm "ready" to go and do this. It's very difficult to describe all of the emotions surrounding this. Yesterday I was joking with Grace that we could just pretend this isn't happening and not go for this surgery. She said,"Mom, that's ridiculous! Then you would still have cancer in your body! Your getting it out, and that's final!" So there you have it. Out of the mouths of babes.
We are driving to Idaho today and stopping to take in a waterslide. No sense missing an opportunity for fun when you have it!
Everyone is out in the car waiting for me. I am the last to leave. Not kicking and screaming exactly, but not really looking forward to the week that lies ahead, either.
I will write more as I have time.
Love,
Susan
The past few weeks have been a flurry of activity as we have been preparing for this. Thanks to the help of some amazing friends, our master bedroom is now painted! We moved back into it this Wednesday and are happy to be back in our own space.
I can't say that I'm "ready" to go and do this. It's very difficult to describe all of the emotions surrounding this. Yesterday I was joking with Grace that we could just pretend this isn't happening and not go for this surgery. She said,"Mom, that's ridiculous! Then you would still have cancer in your body! Your getting it out, and that's final!" So there you have it. Out of the mouths of babes.
We are driving to Idaho today and stopping to take in a waterslide. No sense missing an opportunity for fun when you have it!
Everyone is out in the car waiting for me. I am the last to leave. Not kicking and screaming exactly, but not really looking forward to the week that lies ahead, either.
I will write more as I have time.
Love,
Susan
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