Monday, August 5, 2019
Monday, November 21, 2016
The Update
It's been almost six months since my FAQ, so I thought I'd take a pre-Thanksgiving snow day to do an update about the Best Breast Cancer Ever.
The short story is that everything from the FAQ still holds true: I still have cancer, I still take 3 drugs to control it, and I still feel normal.
Now for the longer story, which I'll do in sections.
The $10,000 Meds
When we left off in June, I had just returned from a second opinion in Boston at Dana Farber Cancer Center. Dr. M at Dana Farber's advice was to add a newly FDA approved (2015) drug called iBrance to the letrozole I'd been taking since January. The letrozole had been preventing any estrogen in my body from bonding with my cancer cells. The iBrance works to disrupt cell division just in case the estrogen does get to the cell or if it learns to divide without estrogen. It's called a CDK 4/6 inhibitor, but I don't know what that means.
Within a few days of my return from Boston, Dr. K (local oncologist) had agreed to this change and my insurance had approved it. I picked up a normal looking bottle of meds from the pharmacy at my oncology center. To my disappointment, it's not actually an iDrug, and didn't come in a white case with an apple.
As any of us would do, before taking my first pill (with food but not with grapefruit), I did some Googling to find out what to expect. Along with people on message boards complaining about fatigue, hair loss, nausea, etc, there were many complaints and anxieties about the price. "What price?" I thought, "I just picked it up at the pharmacy desk." More googling reveals this:
I am taking a $10,000/month drug! And that's with rounding down, because the $340 or $683 don't seem to matter when you're taking a $10,000/month drug!
My insurance approved this within days without any calls, questions, or letters to me. Thank you Excellus BCBS! (Fine print: I read that I have a $500 yearly deductible on meds, and I have asked the pharmacy about this. They said I should receive a bill from my insurance. Then I got my "explanation of benefits" and it said that the $500 will be billed to me by the pharmacy. I went back to the pharmacy, and they don't know who I should speak to. So I owe somebody $500, but nobody wants it.)
This all does make me do some soul searching. What if we didn't have such an insurance plan? What if we were covered at 80%? Could we afford $2000/month to keep me alive? Maybe? Or would we choose to just take the letrozole and hope that those cancer cells don't figure out how to divide without estrogen? What if a future drug isn't covered? Would we diminish our family quality of life to keep me alive a little longer? How are these drug prices set anyhow? What if someday a lifetime maximum is set on my policy?
I just picked up my sixth bottle of iBrance (ahem, Ibrance) the other day and still haven't been asked for money. Paul and I have found humor in the situation when I make my pick-up in the middle of a bunch of errands, then leave the bottle on the passenger seat while running into Wegmans for Brussels sprouts and bagels. Nobody realizes there is $10,000 sitting there in plain view. Is there a street value for iBrance?
There's also math to do here. The drug does a number on my white blood cell counts, so I have to take a week off periodically. The use of the word "periodically" is quite fitting, as it turns out the standard treatment is a 3 weeks on/1 week off schedule. Sound familiar, ladies? So each bottle of iBrance contains 21 pills. Want to see a $476 pill? Here you go:
The Oophorectomy
When we left off in June, I was getting shots to prevent my ovaries from making estrogen, being that my cancer likes estrogen and all. The biopsy that Dr. M at Dana Farber recommended confirmed that the breast cancer in my pelvis still likes estrogen, so the shots were to continue until we could schedule my oophorectomy (ovary removal). I was fine with a casual schedule for that, and planned to wait until the girls were at Camp Kesem (overnight summer camp for children of parents with cancer) to have the surgery.
Then SURPRISE! On July 6, I got my period. Totally normal period, just like the ones I'd had since I was 13, which was really bad news. It meant that despite the shots, my body was still producing estrogen, so the drugs I'd been taking weren't being as effective as they could be, if at all.
After a few stressed out phone calls to oncologist's offices (here and Boston), nobody really answered my question about whether I should take my pills that night or not. It was a medical mystery, but I went with the "it can't hurt" philosophy while getting in touch with my gynecologist to schedule that oophorectomy, stat.
Two weeks later, I was ovary-less and back to knowing my letrozole and iBrance were doing what they were designed to do.
The oophorectomy was done laproscopically, meaning they made 3 little holes in my lower abdomen. One was for a thin camera and the other two were for cutting and pulling out the two ovaries with their connected Fallopian tubes.
It was a tremendously easy out-patient surgery. I went straight from the hospital to an outdoor picnic with a 1/4 mile walk to the picnic site. The next couple days, I felt like I had just done a really hard core workout: sore all through my front and sides, but still able to get up and about without a problem. (Although I did spend a day in bed letting my friend Sara clean the house, because who wouldn't?)
Two weeks later, I did a sprint triathlon, which sounds impressive, but really isn't (see below). And in the past 4 months, I haven't had a period, so I guess I have to trust that the ovaries are really not there any more.
The Scans
Wanting to know if these drugs are working is part of the mental deal for cancer lifers. However, scanning my body weekly or monthly would be exposing me to excessive amounts of radiation. So doctors usually do scans every 3 or 4 or 6 months, depending on the doctor's philosophies and on how the patient feels. As I keep saying, I feel fine. I can feel some discomfort in my left pelvis, but it's no more than you would feel if you sat in one position for 30 minutes and wanted to change positions because you're just a little achy.
Additionally, because of all the problems with the estrogen that I described above, we weren't sure if the drugs had been working optimally, so they needed a chance to do their job. I didn't have any scans from April through October.
During my appointments with Dr. K over these past few months, he would order bloodwork to check on the white blood cells, and occasionally he'd throw in a blood draw for CA27.29, a test that looks for cancer antigens in my blood. A normal person's "tumor markers" are supposed to be under 39. Mine have been coming out in the 40's since these breast cancer mets have been around.
At my October appointment, the tumor marker came out around 64. Quite, a jump, huh? As before, Dr. K and the nurses don't really worry about this, as it's not a reliable indicator of cancer growth, just one piece of the puzzle. But since it had been six months since my last scans, they were ordered. ("Finally!" I thought.)
With some driving around town and some rescheduled appointments due to a broken bone scanner, I had an MRI, a CT scan, and a Bone Scan done in late October and early November. The MRI showed the same exact tumors in my pelvis as before. They haven't grown or shrunk. They're still just there. Medium news. The CT scan shows that nothing has spread to my liver, lungs, brain, or other important organs. Good news.
The Bone Scan is the one where they inject me with a radioactive solution. If an area of my body lights up/glows during the scan, it indicates the radioactive solution is being drawn there, thus showing more cell division than in other places. The results showed, "increased activity" in my pelvis but no growth. Bad news? Dr. K decided that we'll keep me on the same treatment and do a wait-and-see.
The Doctors
Dr. K is a really smart guy. He's extremely experienced. If a study has been conducted, he has committed the results to memory. Other doctors turn to him for advice. He has known me since my initial diagnosis in 2012 and we even have connections from before that (he lived in a house on my street while I was away at college/post-college and he knew my parents). I've always felt lucky that I was assigned one of the best.
However, if you'll notice, I didn't mention any personality traits there. Although there aren't awkward silences (he's a chatty guy), I never felt a "click" with him. That was okay when I was on maintenance visits a couple times a year after my 2012 treatment for stage 3 breast cancer. However, now that I'm stage 4, I will be visiting my oncologist every month or two for the rest of my life. Decisions will be made about treatments where the answer is a matter of opinion. Many times, an oncologist will leave decisions up to the patient after presenting options. Shouldn't I have someone who I can work well with?
I'd been noticing this for a while, but I had an appointment last month where the proverbial camel's back was broken. Dr. K was explaining to an intern (or something...maybe a new oncology nurse) about my whole situation. He was basically reading all of my history off a chart, although he could do some from memory. Each time I'd interject with more details or corrections, he would say to the student, "See. She's really smart." I didn't take that as a compliment. In fact, it felt pretty condescending. I mean, of course I know about my cancer! Of course I do research about it! It's my LIFE! He may think about me for 30 minutes every few months. I think about my cancer every day. Every hour.
Now, I do not expect an oncologist who lies awake thinking about me. However, it occurred to me that he shouldn't have to read off his chart every time he sees me. I would like a middle of the road oncologist. One who might remember me each month. Someone who can share a laugh about the iBrance on the passenger seat. One who is willing to work with me with decisions as opposed to calling me smart for knowing my own story.
I tried to find someone else at the same practice, since I'm familiar with the routines in the building. I made a few calls, asking for a "patient navigator" or "patient advocate". I would ask, "Would it be possible for me to explore the option of changing doctors within your practice? I'd just like to meet someone else and see if I like them better." Each call was met with stammering, questions about which doctor I'd like to see (I don't know any of the other doctors yet!), and a promise that someone would call me back.
So I called the other local cancer hospital. I was set up with an appointment with a Dr. D for the following Friday. (Since I went to Boston in June, I may have to pay out of pocket since this is my third opinion this year, but it's something I needed to do for peace of mind.)
Paul and I both went to see Dr. D last Friday. She was fantastic! We could talk. She would skip over parts of her generic "Welcome to Breast Cancer" speech if she could see that I already knew stuff. She asked my opinions about things and could tell from my questions when there were things that made me anxious. She admits that she doesn't know everything and will work with other doctors when questions come up (and will happily work with Dr. M at Dana Farber). When I mentioned the recent bone scan "increased activity", she actually took the phone out of my hand to look at the document I had saved there describing the bone scan.
It looks like I have a new doctor.
Dr. D believes that the bone scan likely shows activity that has been there all along, but my original bone scan was done when I had that fractured pelvis so we couldn't see the cancer activity. She verified that the tumor markers are just indicators and since nothing else is showing growth, we should stick to the letrozole/iBrance treatment.
On the very day I met Dr. D, I finally got a call with a suggestion of a new oncologist at my regular practice. I wondered out loud to Paul whether I should meet that doctor, too, but he responded, "What could this new guy say that Dr. D didn't?" I don't think there's anything.
Now I just have to break up with Dr. K.
The Triathlons
Imagine you were a competitive swimmer through college, doing workouts of up to 10,000 yards a day (on double days). Then 20 years later, with a little practice, you are asked to swim 600 yards. No problem at all. Seriously.
Then imagine you can ride a bike. Given an unlimited amount of time and a flat roadway, you could ride 18 miles, right?
Also, picture all of those people wearing costumes, pushing strollers, or being sprayed with paint during any of the thousands of 5Ks that occur each month.
Put those three things together. It's about 2.5 hours of easy exercise. Triathlons don't stress me out at all. I did two of them this past summer after finding out about stage 4 cancer.
The problem is that I haven't been training. At all. Between November 2012 (the end of chemo and radiation) and April 2016 (the diagnosis of metastatic breast cancer), I trained my butt off. Research has shown that staying in shape can prevent cancer recurrence, so I was going to heed that advice!
But it didn't work. Cancer came back. As much as you all think I'm positive and inspiring and shit, I have lost my motivation to exercise. I know it's still good for me, but I don't wanna. I have cancer. I will die way sooner than you. Why should I exercise? As long as I can shovel the driveway this winter and throw together another triathlon next summer to inspire you all, what's the point?
So here's where all of you, "Let me know if I can help?" friends come in. Who can help motivate me?
You know I'm a rule follower. If someone motivates me, I'll make a checklist of the exercise I have to do each day, and nothing will stop me. But if it's too easy, I'll blow you off, and if it's too hard, I'll fracture my pelvis again. I'm not going to make this easy for you. I think I need an intervention!
Most of you have never seen this insane side of me, have you? Ball's in your court.
The End
The short story is that everything from the FAQ still holds true: I still have cancer, I still take 3 drugs to control it, and I still feel normal.
Now for the longer story, which I'll do in sections.
The $10,000 Meds
When we left off in June, I had just returned from a second opinion in Boston at Dana Farber Cancer Center. Dr. M at Dana Farber's advice was to add a newly FDA approved (2015) drug called iBrance to the letrozole I'd been taking since January. The letrozole had been preventing any estrogen in my body from bonding with my cancer cells. The iBrance works to disrupt cell division just in case the estrogen does get to the cell or if it learns to divide without estrogen. It's called a CDK 4/6 inhibitor, but I don't know what that means.
Within a few days of my return from Boston, Dr. K (local oncologist) had agreed to this change and my insurance had approved it. I picked up a normal looking bottle of meds from the pharmacy at my oncology center. To my disappointment, it's not actually an iDrug, and didn't come in a white case with an apple.
I am taking a $10,000/month drug! And that's with rounding down, because the $340 or $683 don't seem to matter when you're taking a $10,000/month drug!
My insurance approved this within days without any calls, questions, or letters to me. Thank you Excellus BCBS! (Fine print: I read that I have a $500 yearly deductible on meds, and I have asked the pharmacy about this. They said I should receive a bill from my insurance. Then I got my "explanation of benefits" and it said that the $500 will be billed to me by the pharmacy. I went back to the pharmacy, and they don't know who I should speak to. So I owe somebody $500, but nobody wants it.)
This all does make me do some soul searching. What if we didn't have such an insurance plan? What if we were covered at 80%? Could we afford $2000/month to keep me alive? Maybe? Or would we choose to just take the letrozole and hope that those cancer cells don't figure out how to divide without estrogen? What if a future drug isn't covered? Would we diminish our family quality of life to keep me alive a little longer? How are these drug prices set anyhow? What if someday a lifetime maximum is set on my policy?
I just picked up my sixth bottle of iBrance (ahem, Ibrance) the other day and still haven't been asked for money. Paul and I have found humor in the situation when I make my pick-up in the middle of a bunch of errands, then leave the bottle on the passenger seat while running into Wegmans for Brussels sprouts and bagels. Nobody realizes there is $10,000 sitting there in plain view. Is there a street value for iBrance?
There's also math to do here. The drug does a number on my white blood cell counts, so I have to take a week off periodically. The use of the word "periodically" is quite fitting, as it turns out the standard treatment is a 3 weeks on/1 week off schedule. Sound familiar, ladies? So each bottle of iBrance contains 21 pills. Want to see a $476 pill? Here you go:
The Oophorectomy
When we left off in June, I was getting shots to prevent my ovaries from making estrogen, being that my cancer likes estrogen and all. The biopsy that Dr. M at Dana Farber recommended confirmed that the breast cancer in my pelvis still likes estrogen, so the shots were to continue until we could schedule my oophorectomy (ovary removal). I was fine with a casual schedule for that, and planned to wait until the girls were at Camp Kesem (overnight summer camp for children of parents with cancer) to have the surgery.
Then SURPRISE! On July 6, I got my period. Totally normal period, just like the ones I'd had since I was 13, which was really bad news. It meant that despite the shots, my body was still producing estrogen, so the drugs I'd been taking weren't being as effective as they could be, if at all.
After a few stressed out phone calls to oncologist's offices (here and Boston), nobody really answered my question about whether I should take my pills that night or not. It was a medical mystery, but I went with the "it can't hurt" philosophy while getting in touch with my gynecologist to schedule that oophorectomy, stat.
Two weeks later, I was ovary-less and back to knowing my letrozole and iBrance were doing what they were designed to do.
The oophorectomy was done laproscopically, meaning they made 3 little holes in my lower abdomen. One was for a thin camera and the other two were for cutting and pulling out the two ovaries with their connected Fallopian tubes.
 |
| This was three days post-oophorectomy. |
Two weeks later, I did a sprint triathlon, which sounds impressive, but really isn't (see below). And in the past 4 months, I haven't had a period, so I guess I have to trust that the ovaries are really not there any more.
The Scans
Wanting to know if these drugs are working is part of the mental deal for cancer lifers. However, scanning my body weekly or monthly would be exposing me to excessive amounts of radiation. So doctors usually do scans every 3 or 4 or 6 months, depending on the doctor's philosophies and on how the patient feels. As I keep saying, I feel fine. I can feel some discomfort in my left pelvis, but it's no more than you would feel if you sat in one position for 30 minutes and wanted to change positions because you're just a little achy.
Additionally, because of all the problems with the estrogen that I described above, we weren't sure if the drugs had been working optimally, so they needed a chance to do their job. I didn't have any scans from April through October.
During my appointments with Dr. K over these past few months, he would order bloodwork to check on the white blood cells, and occasionally he'd throw in a blood draw for CA27.29, a test that looks for cancer antigens in my blood. A normal person's "tumor markers" are supposed to be under 39. Mine have been coming out in the 40's since these breast cancer mets have been around.
At my October appointment, the tumor marker came out around 64. Quite, a jump, huh? As before, Dr. K and the nurses don't really worry about this, as it's not a reliable indicator of cancer growth, just one piece of the puzzle. But since it had been six months since my last scans, they were ordered. ("Finally!" I thought.)
With some driving around town and some rescheduled appointments due to a broken bone scanner, I had an MRI, a CT scan, and a Bone Scan done in late October and early November. The MRI showed the same exact tumors in my pelvis as before. They haven't grown or shrunk. They're still just there. Medium news. The CT scan shows that nothing has spread to my liver, lungs, brain, or other important organs. Good news.
The Bone Scan is the one where they inject me with a radioactive solution. If an area of my body lights up/glows during the scan, it indicates the radioactive solution is being drawn there, thus showing more cell division than in other places. The results showed, "increased activity" in my pelvis but no growth. Bad news? Dr. K decided that we'll keep me on the same treatment and do a wait-and-see.
The Doctors
Dr. K is a really smart guy. He's extremely experienced. If a study has been conducted, he has committed the results to memory. Other doctors turn to him for advice. He has known me since my initial diagnosis in 2012 and we even have connections from before that (he lived in a house on my street while I was away at college/post-college and he knew my parents). I've always felt lucky that I was assigned one of the best.
However, if you'll notice, I didn't mention any personality traits there. Although there aren't awkward silences (he's a chatty guy), I never felt a "click" with him. That was okay when I was on maintenance visits a couple times a year after my 2012 treatment for stage 3 breast cancer. However, now that I'm stage 4, I will be visiting my oncologist every month or two for the rest of my life. Decisions will be made about treatments where the answer is a matter of opinion. Many times, an oncologist will leave decisions up to the patient after presenting options. Shouldn't I have someone who I can work well with?
I'd been noticing this for a while, but I had an appointment last month where the proverbial camel's back was broken. Dr. K was explaining to an intern (or something...maybe a new oncology nurse) about my whole situation. He was basically reading all of my history off a chart, although he could do some from memory. Each time I'd interject with more details or corrections, he would say to the student, "See. She's really smart." I didn't take that as a compliment. In fact, it felt pretty condescending. I mean, of course I know about my cancer! Of course I do research about it! It's my LIFE! He may think about me for 30 minutes every few months. I think about my cancer every day. Every hour.
Now, I do not expect an oncologist who lies awake thinking about me. However, it occurred to me that he shouldn't have to read off his chart every time he sees me. I would like a middle of the road oncologist. One who might remember me each month. Someone who can share a laugh about the iBrance on the passenger seat. One who is willing to work with me with decisions as opposed to calling me smart for knowing my own story.
I tried to find someone else at the same practice, since I'm familiar with the routines in the building. I made a few calls, asking for a "patient navigator" or "patient advocate". I would ask, "Would it be possible for me to explore the option of changing doctors within your practice? I'd just like to meet someone else and see if I like them better." Each call was met with stammering, questions about which doctor I'd like to see (I don't know any of the other doctors yet!), and a promise that someone would call me back.
So I called the other local cancer hospital. I was set up with an appointment with a Dr. D for the following Friday. (Since I went to Boston in June, I may have to pay out of pocket since this is my third opinion this year, but it's something I needed to do for peace of mind.)
Paul and I both went to see Dr. D last Friday. She was fantastic! We could talk. She would skip over parts of her generic "Welcome to Breast Cancer" speech if she could see that I already knew stuff. She asked my opinions about things and could tell from my questions when there were things that made me anxious. She admits that she doesn't know everything and will work with other doctors when questions come up (and will happily work with Dr. M at Dana Farber). When I mentioned the recent bone scan "increased activity", she actually took the phone out of my hand to look at the document I had saved there describing the bone scan.
It looks like I have a new doctor.
Dr. D believes that the bone scan likely shows activity that has been there all along, but my original bone scan was done when I had that fractured pelvis so we couldn't see the cancer activity. She verified that the tumor markers are just indicators and since nothing else is showing growth, we should stick to the letrozole/iBrance treatment.
On the very day I met Dr. D, I finally got a call with a suggestion of a new oncologist at my regular practice. I wondered out loud to Paul whether I should meet that doctor, too, but he responded, "What could this new guy say that Dr. D didn't?" I don't think there's anything.
Now I just have to break up with Dr. K.
The Triathlons
Imagine you were a competitive swimmer through college, doing workouts of up to 10,000 yards a day (on double days). Then 20 years later, with a little practice, you are asked to swim 600 yards. No problem at all. Seriously.
Then imagine you can ride a bike. Given an unlimited amount of time and a flat roadway, you could ride 18 miles, right?
Also, picture all of those people wearing costumes, pushing strollers, or being sprayed with paint during any of the thousands of 5Ks that occur each month.
Put those three things together. It's about 2.5 hours of easy exercise. Triathlons don't stress me out at all. I did two of them this past summer after finding out about stage 4 cancer.
The problem is that I haven't been training. At all. Between November 2012 (the end of chemo and radiation) and April 2016 (the diagnosis of metastatic breast cancer), I trained my butt off. Research has shown that staying in shape can prevent cancer recurrence, so I was going to heed that advice!
But it didn't work. Cancer came back. As much as you all think I'm positive and inspiring and shit, I have lost my motivation to exercise. I know it's still good for me, but I don't wanna. I have cancer. I will die way sooner than you. Why should I exercise? As long as I can shovel the driveway this winter and throw together another triathlon next summer to inspire you all, what's the point?
So here's where all of you, "Let me know if I can help?" friends come in. Who can help motivate me?
You know I'm a rule follower. If someone motivates me, I'll make a checklist of the exercise I have to do each day, and nothing will stop me. But if it's too easy, I'll blow you off, and if it's too hard, I'll fracture my pelvis again. I'm not going to make this easy for you. I think I need an intervention!
Most of you have never seen this insane side of me, have you? Ball's in your court.
The End
Saturday, June 11, 2016
Shari's Breast Cancer FAQ
I've had so many wonderful and supportive friends ask how my trip to Boston this week went, that I'm going to do one of my really long blog posts to explain everything. I've decided to write this in the form of a FAQ, and I'll start with some popular questions before moving on to the Dana Farber trip answers.
How are you feeling?
Totally normal. No, I'm not exaggerating or trying to hide anything. The truth is that this breast cancer in my pelvis doesn't hurt. I know it's there because of MRIs and a CT scan, but the best way to describe how it feels is to have you picture lying on your side for half an hour reading a book. Eventually, you turn over to your other side, right? Do you turn because you were in pain? No. It was just uncomfortable. That's how I feel if I'm on my left side for too long. Uncomfortable. But if it weren't for the scans, I'd just assume that my 44-year-old body gets tired of being on one side more quickly than it used to.
How can I help?
This is the most popular question I've been getting because I seriously have the kindest friends in the world. All I can do is take rain checks right now. As you just read, I feel absolutely fine and I want to take advantage of being able to cook dinner, drive my kids around, and clean for myself (or, more accurately, choose not to clean). But in 2 years or 5 years or hopefully 10-20 years, we'll need the help. I'm saving all of these messages and will call on you then, okay?
Are you in denial?
Since my original cancer diagnosis in 2012, I've had two friends receive much more serious diagnoses than mine. I remember giving them each their hugs and support, and hearing them say with a smile that their treatments are working and they have great doctors and that they're luckily feeling good for the moment. In my head, I was too realistic to just accept all of that. These women both had terminal cancers (one has since died), and I was afraid that they weren't comprehending that.
Now, I understand their answers. I have terminal cancer and I'm not in denial. But forgetting about it and going about my normal life with a smile on my face is absolutely the only option. I guess I'd have every excuse to lock myself in my bedroom with the curtains closed and eat cookie dough every day, but my normal life sounds better. However, I will admit that I've spent over 100 hours in Stars Hollow, CT over the past month. That is my escape when I need it.
What do you mean, terminal? You beat this before, right?
This is stage 4 breast cancer we're talking about here. Barring a runaway bus accident or a yet-to-be-discovered cure, I WILL die from this. Stage 4 breast cancer is treatable, but not curable. Every bit of treatment I will receive can help either shrink the tumors or slow their spread to other organs, but I will always have cancer. I cannot beat it.
Stage 4? Is it huge?
No, the four tumors I have in my pelvis are actually very small. It is called stage 4 because it is not in my breast any more. When I was initially diagnosed four years ago, I had a larger tumor in my breast which had spread a little to the lymph nodes under my arm, but since it was all local, it was considered stage 3a. Now that those breast cancer cells have figured out how to grow elsewhere in my body, they get promoted to stage 4. And since these breast cancer cells were so smart and they figured out how to grow despite the chemo and radiation I endured back then, they will continue to grow throughout my body, sooner or later.
What about the treatments?
I've been taking a pill to block my estrogen for four years now, and luckily, I don't have side effects from it. The doctors believe that is still working to slow the cancer from spreading, so I will continue with that daily pill. Now, the plan is that I'll be getting an infusion of Zometa once every 3 months to strengthen my bones. If the bones are stronger, the cancer will have more difficulty growing and taking over in there. I had my first infusion a few weeks ago and didn't seem to get side effects from that, either. Achy the next day, but nothing else. So I am in treatment, but it doesn't affect me much at all.
Why aren't you doing chemo again?
This was a question so obvious that even 8-year-old Maggie asked it. I've asked many doctors, including Dr. Google, and it just won't work right now. Although there are many different formulations of chemotherapy, once breast cancer recurs outside of the breast, the traditional throw-up-and-lose-your-hair chemo would just make me miserable and not extend my life for as long as other treatments will. The plan I have to follow is to get the treatments that will give me the highest quality of life for the longest possible time. That type of chemo doesn't fit that plan.
Could this all be a mistake?
Here comes the first answer to the Boston question, and it comes with a story.
When I initially met Dr. M in an exam room on the ninth floor of the Dana-Farber Cancer Institute in Boston, she asked to hear my story. I spent 5-10 minutes telling her everything I've told you in "You Can't Cure Cancer with a Foam Roller" and then she told me to put on a gown that opens in the front and she'd be right back. She was gone for about half an hour, leaving me wondering if she actually thought I was that inefficient at undressing. But when she came back, and she sat down and started talking, it became clear what had taken so long. She had actually walked down the hallway to see a radiologist, and the two of them had pored over my scans and talked about them.
Dr. M said that they started with my April scans, the ones in which my doctors in Syracuse had recognized the cancer with 95% certainty. Dr. M and this radiologist who spends all day every day looking at pictures of cancer said that it was absolutely, undoubtedly cancer. Then, because I had told her about my MRI last December which had shown a possible fracture in my pelvis, she and the radiologist looked back at that scan. To these experienced cancer doctors, they saw it back then, too. However, they kind of understood how someone who works at an orthopedic office might mistake it for a fracture. So it's been there for a while. (I guess I could say that might be good. I mean, there's been cancer in my pelvis for many months, and the tumors are still less than 1/2 inch long.)
So, what did they say in Boston?
After Dr. M did a quick examination of my chest, she sat down and started to talk. She clearly and concisely gave me a tremendous amount of information, most of which I already knew from the constant reading I've been doing over the past month. Generally speaking, we are 100% on the right track, but there are four changes she recommends and we'll be following.
1 - An obvious question we've had for the past month is about getting a biopsy. If there's cancer there, why aren't we sticking a needle in and taking out some cells to find out about it? Dr. M agrees with Dr. K in Syracuse that it most likely has the same attributes as the original breast cancer, so we should treat it as such. Also, sticking a needle into bone often results in getting lots of bone cells and not enough tumor cells to really answer all of the questions. However, she does recommend giving it a try. It's a simple enough procedure that it can be done in Syracuse, and we'll then have all of the information.
2 - There was a conference just last week where new research was presented. Dr. M and Dr. K both attended. Up until now, stage 4 breast cancer patients have been treated with an aromatase inhibitor (AI, which is my pill called Femara) until it stops working. Then they would give a pill called iBrance (which I intuitively spell with a lower case i like iPhone, but I don't know if that's truly how it's spelled). According to this recent trial, half of the patients were given iBrance at the same time as their AI, and half were given just the AI. The iBrance patients did better. So, I'll be starting iBrance, which I really hope comes in a white package with an apple on it.
3 - I currently get shots to put me into menopause so that the AI will work. Although my gynecologist once recommended an oophorectomy (ovary removal), Dr. K said that the shots work just as well to shut down the ovaries, so no need to have surgery. Dr. M recommends the surgery, so I'm going to go for it. Supposedly a minor surgery, and it will give all of you local friends dying to help an excuse to cook for me.
4 - I've asked both oncologists about radiation targeted to my pelvis. Evidently, the only reason doctors recommend radiation is to relieve pain. Since the cancer will always be there, and I'm taking the medicines to prevent it from spreading, there's no need to radiate. However, if I were complaining about pain, probably from the tumors touching some nerves, radiation could shrink the tumor enough to relieve that pain. Here's where I fall into a bit of a unique situation. Since I like to run and lift, and I experience pain when doing so, shrinking the tumors can improve my quality of life. I'll be calling my local radiation oncologist now to see what she has to say.
While I was with Dr. M, I went through a full page of questions that I had prepared for her, and she took the time to answer every one honestly and thoroughly. Now, my name is in the system at Dana-Farber, so anytime that I feel I need an appointment (either something getting worse or something I want a second opinion about), I can just give them a call or schedule another visit.
My appointment was just what I'd hoped for: a validation that we're doing the right things, and a chance to speak with the best of the best about my terminal cancer.
How are you feeling?
Totally normal. No, I'm not exaggerating or trying to hide anything. The truth is that this breast cancer in my pelvis doesn't hurt. I know it's there because of MRIs and a CT scan, but the best way to describe how it feels is to have you picture lying on your side for half an hour reading a book. Eventually, you turn over to your other side, right? Do you turn because you were in pain? No. It was just uncomfortable. That's how I feel if I'm on my left side for too long. Uncomfortable. But if it weren't for the scans, I'd just assume that my 44-year-old body gets tired of being on one side more quickly than it used to.
How can I help?
This is the most popular question I've been getting because I seriously have the kindest friends in the world. All I can do is take rain checks right now. As you just read, I feel absolutely fine and I want to take advantage of being able to cook dinner, drive my kids around, and clean for myself (or, more accurately, choose not to clean). But in 2 years or 5 years or hopefully 10-20 years, we'll need the help. I'm saving all of these messages and will call on you then, okay?
Are you in denial?
Since my original cancer diagnosis in 2012, I've had two friends receive much more serious diagnoses than mine. I remember giving them each their hugs and support, and hearing them say with a smile that their treatments are working and they have great doctors and that they're luckily feeling good for the moment. In my head, I was too realistic to just accept all of that. These women both had terminal cancers (one has since died), and I was afraid that they weren't comprehending that.
Now, I understand their answers. I have terminal cancer and I'm not in denial. But forgetting about it and going about my normal life with a smile on my face is absolutely the only option. I guess I'd have every excuse to lock myself in my bedroom with the curtains closed and eat cookie dough every day, but my normal life sounds better. However, I will admit that I've spent over 100 hours in Stars Hollow, CT over the past month. That is my escape when I need it.
What do you mean, terminal? You beat this before, right?
This is stage 4 breast cancer we're talking about here. Barring a runaway bus accident or a yet-to-be-discovered cure, I WILL die from this. Stage 4 breast cancer is treatable, but not curable. Every bit of treatment I will receive can help either shrink the tumors or slow their spread to other organs, but I will always have cancer. I cannot beat it.
Stage 4? Is it huge?
No, the four tumors I have in my pelvis are actually very small. It is called stage 4 because it is not in my breast any more. When I was initially diagnosed four years ago, I had a larger tumor in my breast which had spread a little to the lymph nodes under my arm, but since it was all local, it was considered stage 3a. Now that those breast cancer cells have figured out how to grow elsewhere in my body, they get promoted to stage 4. And since these breast cancer cells were so smart and they figured out how to grow despite the chemo and radiation I endured back then, they will continue to grow throughout my body, sooner or later.
What about the treatments?
I've been taking a pill to block my estrogen for four years now, and luckily, I don't have side effects from it. The doctors believe that is still working to slow the cancer from spreading, so I will continue with that daily pill. Now, the plan is that I'll be getting an infusion of Zometa once every 3 months to strengthen my bones. If the bones are stronger, the cancer will have more difficulty growing and taking over in there. I had my first infusion a few weeks ago and didn't seem to get side effects from that, either. Achy the next day, but nothing else. So I am in treatment, but it doesn't affect me much at all.
Why aren't you doing chemo again?
This was a question so obvious that even 8-year-old Maggie asked it. I've asked many doctors, including Dr. Google, and it just won't work right now. Although there are many different formulations of chemotherapy, once breast cancer recurs outside of the breast, the traditional throw-up-and-lose-your-hair chemo would just make me miserable and not extend my life for as long as other treatments will. The plan I have to follow is to get the treatments that will give me the highest quality of life for the longest possible time. That type of chemo doesn't fit that plan.
Could this all be a mistake?
Here comes the first answer to the Boston question, and it comes with a story.
When I initially met Dr. M in an exam room on the ninth floor of the Dana-Farber Cancer Institute in Boston, she asked to hear my story. I spent 5-10 minutes telling her everything I've told you in "You Can't Cure Cancer with a Foam Roller" and then she told me to put on a gown that opens in the front and she'd be right back. She was gone for about half an hour, leaving me wondering if she actually thought I was that inefficient at undressing. But when she came back, and she sat down and started talking, it became clear what had taken so long. She had actually walked down the hallway to see a radiologist, and the two of them had pored over my scans and talked about them.
Dr. M said that they started with my April scans, the ones in which my doctors in Syracuse had recognized the cancer with 95% certainty. Dr. M and this radiologist who spends all day every day looking at pictures of cancer said that it was absolutely, undoubtedly cancer. Then, because I had told her about my MRI last December which had shown a possible fracture in my pelvis, she and the radiologist looked back at that scan. To these experienced cancer doctors, they saw it back then, too. However, they kind of understood how someone who works at an orthopedic office might mistake it for a fracture. So it's been there for a while. (I guess I could say that might be good. I mean, there's been cancer in my pelvis for many months, and the tumors are still less than 1/2 inch long.)
So, what did they say in Boston?
After Dr. M did a quick examination of my chest, she sat down and started to talk. She clearly and concisely gave me a tremendous amount of information, most of which I already knew from the constant reading I've been doing over the past month. Generally speaking, we are 100% on the right track, but there are four changes she recommends and we'll be following.
1 - An obvious question we've had for the past month is about getting a biopsy. If there's cancer there, why aren't we sticking a needle in and taking out some cells to find out about it? Dr. M agrees with Dr. K in Syracuse that it most likely has the same attributes as the original breast cancer, so we should treat it as such. Also, sticking a needle into bone often results in getting lots of bone cells and not enough tumor cells to really answer all of the questions. However, she does recommend giving it a try. It's a simple enough procedure that it can be done in Syracuse, and we'll then have all of the information.
2 - There was a conference just last week where new research was presented. Dr. M and Dr. K both attended. Up until now, stage 4 breast cancer patients have been treated with an aromatase inhibitor (AI, which is my pill called Femara) until it stops working. Then they would give a pill called iBrance (which I intuitively spell with a lower case i like iPhone, but I don't know if that's truly how it's spelled). According to this recent trial, half of the patients were given iBrance at the same time as their AI, and half were given just the AI. The iBrance patients did better. So, I'll be starting iBrance, which I really hope comes in a white package with an apple on it.
3 - I currently get shots to put me into menopause so that the AI will work. Although my gynecologist once recommended an oophorectomy (ovary removal), Dr. K said that the shots work just as well to shut down the ovaries, so no need to have surgery. Dr. M recommends the surgery, so I'm going to go for it. Supposedly a minor surgery, and it will give all of you local friends dying to help an excuse to cook for me.
4 - I've asked both oncologists about radiation targeted to my pelvis. Evidently, the only reason doctors recommend radiation is to relieve pain. Since the cancer will always be there, and I'm taking the medicines to prevent it from spreading, there's no need to radiate. However, if I were complaining about pain, probably from the tumors touching some nerves, radiation could shrink the tumor enough to relieve that pain. Here's where I fall into a bit of a unique situation. Since I like to run and lift, and I experience pain when doing so, shrinking the tumors can improve my quality of life. I'll be calling my local radiation oncologist now to see what she has to say.
While I was with Dr. M, I went through a full page of questions that I had prepared for her, and she took the time to answer every one honestly and thoroughly. Now, my name is in the system at Dana-Farber, so anytime that I feel I need an appointment (either something getting worse or something I want a second opinion about), I can just give them a call or schedule another visit.
My appointment was just what I'd hoped for: a validation that we're doing the right things, and a chance to speak with the best of the best about my terminal cancer.
Saturday, May 21, 2016
You Can't Cure Cancer with a Foam Roller
Many of you remember when I made the bold mistake of trying to learn something new at age 43: riding my bike clipped into my pedals. On May 7, 2015, on my sixth ride clipped in, I fractured my distal radius (broke my wrist) in a parking lot fall.
During my seven weeks in a cast, I did very little exercise because I didn't like the feeling of sweat and swelling in the cast. So when it was removed in June, I was excited to get back to slow running as part of my routine. On my first day back, I started feeling pain in my left butt. Figuring it was just a sore muscle or something from being out of shape, I lowered my mileage and started diligently stretching and foam rolling to try to get rid of the dull pain. I also googled my symptoms and found that they matched with periformis or sciatica, both common running conditions. A PT suggested possibly a herniated disc, so I stretched for that, too.
When the pain still didn't go away by September 2015, I decided to take a running break. I didn't run, but I did go to Method 360 and spin classes and continued doing family activities (pumpkin picking, walking up the hill to the Carrier Dome, etc). I also decided to see an orthopedic specialist, who agreed with the possible herniated disc and encouraged the running break. Follow-up in 3 months.
By December 2015, my butt was actually worse, to the point that I was limping on bad days. It was a sore, somewhat stabbing pain, always in my butt, despite being told that it was coming from the nerves in my spine. The act of rolling over in bed, using my muscles to twist my body, was actually more difficult than walking. I gave up exercising all together.
At my orthopedic follow-up, an MRI of my spine was ordered. The results came back showing a bulging disc that wasn't quite touching any nerves (so it shouldn't have been causing pain), but a radiologist, who I will never meet but will always hold in high esteem, wrote a note recommending another MRI for a better view of my pelvis due to my history of cancer. At my appointment a few days later, I got the weird results that I had evidence of a pelvic fracture.
That highlighted area (my highlights) says something about, "additional imaging may be warranted...to look for other lesions which would raise suspicions for metastatic disease." This is where my paranoid and pushy personality took over. The PA reading the report to me brushed over this part. He was focused on the "pattern of bone marrow edema (swelling)...suspicious for stress or insufficiency fracture". I was drawn directly to the words "metastatic disease". The word metastatic means that cancer has spread from it's original location to a new one. Although I am no better than the average person at reading this gobbledygook, I realized that this report was not ruling out that my cancer was back.
Thinking about this news of a pelvic fracture, I was baffled. Why the heck would a healthy 43 year old who exercises regularly and has not had any pelvic trauma just randomly get a pelvic fracture? I hadn't really increased my running, unless you count not running for 7 weeks and then going back to 5k distances. Why was it still getting worse even though I wasn't running? Basically, WTF?
I called my oncologist and asked these questions. I wanted something that could see in there and tell me if there was a metastatic tumor. So although he was kind of nonchalant about my worries, he did agree to a bone scan and bone density test. He also ordered a blood draw for a full workup or something. All of these tests took place in January.
Here comes the first scary part. I woke up one morning a day or two after that blood draw and reached for my phone like always. I mean, someone may have liked something on my Facebook page while I was sleeping, right? There was an automated email from the oncology center that the bloodwork results were ready. I clicked on it and scrolled through 3 screens of every bit of my blood falling in the normal range. Then, one of the very last lines had something called "Cancer antigen 27.29". It was above the normal range! I think normal was 0-39 and my level was 45! The ONE line on those pages of blood results that had the word "cancer" in it was the ONE that was abnormal. At 6:45am, I was lying in bed reading that my cancer was back! I was too stunned to even tell Paul who was lying next to me.
Obviously, I called about it as soon as the kids got on the bus. I left a message and the call back from a nurse came soon with the news that, "Oh, that's no big deal. People go over on that reading for lots of reasons. Could be plenty of things besides cancer." Later, at my follow-up appointment about the bone scan results and bone density test, a nurse again told me that they see that "tumor marker" in the 100s or even 1000s, so I am okay. And the bone scan results were just about the same as that highlighted MRI: Can't rule out cancer but we think it's a fracture.
The only change that was made in January 2016, with all of these dots not connected yet, was that I was changed to a supposedly more effective estrogen blocker. I had been taking Tamoxifen for 4 years, the standard treatment for pre-menopausal women. My oncologist decided to move me onto Femara for extra insurance on the estrogen-blocking front. In order to do so, I have to get monthly shots of Lupron to put me into menopause. Hot flashes were no big deal compared to the looming cancer, I figured.
From January until April, I hung out in wait-and-see mode. I was completely resting my pelvis, not doing any exercise beyond the minimum amount of walking required to substitute teach and cook dinner. And I really started to feel better. There was still a dull pain, so I didn't think running was in my cards yet, but when I went to an April checkup with the orthopedic specialist I was ready for a referral to physical therapy so I could start getting back in shape. However, pushy me, I said, "Since I'm feeling better, I assume the pelvic fracture would be mostly healed. Can we do another MRI to rule out cancer?" He agreed to my request.
On the morning of April 28, 2016, I went to have an MRI done to prove that my pelvis was all good. It went smoothly and on my way out, the technician asked, "Have you scheduled your follow-up?" I confirmed that yes, I'd be back in 10 days or so to meet with the doctor. Done, and out for a regular day. That afternoon, I was folding laundry with 6-year-old Reese in the room, and a scheduler called. "I'm calling to see if you can come in on Monday. The doctor would like to see you sooner about your MRI results."
Have you EVER had a doctor call you to move your appointment closer? That could NOT be good! I said this to her. I was 100% aware that she had no idea what the results were, but I insisted vehemently over the next 2 minutes on the phone that someone MUST call me right away to let me know what's going on. She said that the doctor was in surgery and was going to be off the next day. I continued to insist on someone, anyone calling me as soon as humanly possible. It worked. The orthopedic doctor, whom I had never met, called me from his personal cell phone within the hour to let me know that yes, there were a number of lesions on my pelvis that looked like metastases. Here's the report (highlights are mine):
After that phone call, I explained to Reese (still in the room) what was going on and called Paul. Then I called my oncologist's office and had them request the results. Then we went on to have a normal weekend, including riding child-sized scooters, slightly panicked, but what else can you do?
Soon, I was scheduled for a CT scan and more bloodwork. Paul and I met with the oncologist on Wednesday, May 11 for results. The CT scan showed the same lesions but nothing in my other organs. We'd gone a couple weeks knowing about the likelihood of bone mets, but in our first official conversation with the doctor, he got to report that there was no more bad news. So yay! Best mets ever, right?
That cancer antigen 27.29 is up to 48, which Dr. K (oncologist) says is the same as 45. My knowledge of math says otherwise, but again, when comparing it to 100s and 1000s, I guess they're pretty similar.
One little caveat here: Everything I am reporting here is based on scans. I have not had a biopsy of the bone lesions yet. Therefore, we do not KNOW for sure that these are cancer cells. Dr. K says that he's 95% certain that it is cancer. When I ask what else they could be, he doesn't have an answer. That's why I gave him the "thank you". Now we can treat this issue I've been dealing with for almost a year. It really helps psychologically to have a diagnosis.
Here's my summary of all of this yapping I've been doing: A year ago, there were some very small lesions of breast cancer growing in my pelvis. They weakened the bone so that when I ran, it fractured. All of the scans after that had too much swelling from the fracture to see the little tumors growing. Now that the swelling has gone down, we can see the 4 lesions.
Or in other words, last summer, I was trying to stretch and foam roll in order to make some cancer go away.
During my seven weeks in a cast, I did very little exercise because I didn't like the feeling of sweat and swelling in the cast. So when it was removed in June, I was excited to get back to slow running as part of my routine. On my first day back, I started feeling pain in my left butt. Figuring it was just a sore muscle or something from being out of shape, I lowered my mileage and started diligently stretching and foam rolling to try to get rid of the dull pain. I also googled my symptoms and found that they matched with periformis or sciatica, both common running conditions. A PT suggested possibly a herniated disc, so I stretched for that, too.
When the pain still didn't go away by September 2015, I decided to take a running break. I didn't run, but I did go to Method 360 and spin classes and continued doing family activities (pumpkin picking, walking up the hill to the Carrier Dome, etc). I also decided to see an orthopedic specialist, who agreed with the possible herniated disc and encouraged the running break. Follow-up in 3 months.
By December 2015, my butt was actually worse, to the point that I was limping on bad days. It was a sore, somewhat stabbing pain, always in my butt, despite being told that it was coming from the nerves in my spine. The act of rolling over in bed, using my muscles to twist my body, was actually more difficult than walking. I gave up exercising all together.
At my orthopedic follow-up, an MRI of my spine was ordered. The results came back showing a bulging disc that wasn't quite touching any nerves (so it shouldn't have been causing pain), but a radiologist, who I will never meet but will always hold in high esteem, wrote a note recommending another MRI for a better view of my pelvis due to my history of cancer. At my appointment a few days later, I got the weird results that I had evidence of a pelvic fracture.
That highlighted area (my highlights) says something about, "additional imaging may be warranted...to look for other lesions which would raise suspicions for metastatic disease." This is where my paranoid and pushy personality took over. The PA reading the report to me brushed over this part. He was focused on the "pattern of bone marrow edema (swelling)...suspicious for stress or insufficiency fracture". I was drawn directly to the words "metastatic disease". The word metastatic means that cancer has spread from it's original location to a new one. Although I am no better than the average person at reading this gobbledygook, I realized that this report was not ruling out that my cancer was back.
Thinking about this news of a pelvic fracture, I was baffled. Why the heck would a healthy 43 year old who exercises regularly and has not had any pelvic trauma just randomly get a pelvic fracture? I hadn't really increased my running, unless you count not running for 7 weeks and then going back to 5k distances. Why was it still getting worse even though I wasn't running? Basically, WTF?
I called my oncologist and asked these questions. I wanted something that could see in there and tell me if there was a metastatic tumor. So although he was kind of nonchalant about my worries, he did agree to a bone scan and bone density test. He also ordered a blood draw for a full workup or something. All of these tests took place in January.
Here comes the first scary part. I woke up one morning a day or two after that blood draw and reached for my phone like always. I mean, someone may have liked something on my Facebook page while I was sleeping, right? There was an automated email from the oncology center that the bloodwork results were ready. I clicked on it and scrolled through 3 screens of every bit of my blood falling in the normal range. Then, one of the very last lines had something called "Cancer antigen 27.29". It was above the normal range! I think normal was 0-39 and my level was 45! The ONE line on those pages of blood results that had the word "cancer" in it was the ONE that was abnormal. At 6:45am, I was lying in bed reading that my cancer was back! I was too stunned to even tell Paul who was lying next to me.
Obviously, I called about it as soon as the kids got on the bus. I left a message and the call back from a nurse came soon with the news that, "Oh, that's no big deal. People go over on that reading for lots of reasons. Could be plenty of things besides cancer." Later, at my follow-up appointment about the bone scan results and bone density test, a nurse again told me that they see that "tumor marker" in the 100s or even 1000s, so I am okay. And the bone scan results were just about the same as that highlighted MRI: Can't rule out cancer but we think it's a fracture.
The only change that was made in January 2016, with all of these dots not connected yet, was that I was changed to a supposedly more effective estrogen blocker. I had been taking Tamoxifen for 4 years, the standard treatment for pre-menopausal women. My oncologist decided to move me onto Femara for extra insurance on the estrogen-blocking front. In order to do so, I have to get monthly shots of Lupron to put me into menopause. Hot flashes were no big deal compared to the looming cancer, I figured.
From January until April, I hung out in wait-and-see mode. I was completely resting my pelvis, not doing any exercise beyond the minimum amount of walking required to substitute teach and cook dinner. And I really started to feel better. There was still a dull pain, so I didn't think running was in my cards yet, but when I went to an April checkup with the orthopedic specialist I was ready for a referral to physical therapy so I could start getting back in shape. However, pushy me, I said, "Since I'm feeling better, I assume the pelvic fracture would be mostly healed. Can we do another MRI to rule out cancer?" He agreed to my request.
On the morning of April 28, 2016, I went to have an MRI done to prove that my pelvis was all good. It went smoothly and on my way out, the technician asked, "Have you scheduled your follow-up?" I confirmed that yes, I'd be back in 10 days or so to meet with the doctor. Done, and out for a regular day. That afternoon, I was folding laundry with 6-year-old Reese in the room, and a scheduler called. "I'm calling to see if you can come in on Monday. The doctor would like to see you sooner about your MRI results."
Have you EVER had a doctor call you to move your appointment closer? That could NOT be good! I said this to her. I was 100% aware that she had no idea what the results were, but I insisted vehemently over the next 2 minutes on the phone that someone MUST call me right away to let me know what's going on. She said that the doctor was in surgery and was going to be off the next day. I continued to insist on someone, anyone calling me as soon as humanly possible. It worked. The orthopedic doctor, whom I had never met, called me from his personal cell phone within the hour to let me know that yes, there were a number of lesions on my pelvis that looked like metastases. Here's the report (highlights are mine):
After that phone call, I explained to Reese (still in the room) what was going on and called Paul. Then I called my oncologist's office and had them request the results. Then we went on to have a normal weekend, including riding child-sized scooters, slightly panicked, but what else can you do?
Soon, I was scheduled for a CT scan and more bloodwork. Paul and I met with the oncologist on Wednesday, May 11 for results. The CT scan showed the same lesions but nothing in my other organs. We'd gone a couple weeks knowing about the likelihood of bone mets, but in our first official conversation with the doctor, he got to report that there was no more bad news. So yay! Best mets ever, right?
That cancer antigen 27.29 is up to 48, which Dr. K (oncologist) says is the same as 45. My knowledge of math says otherwise, but again, when comparing it to 100s and 1000s, I guess they're pretty similar.
One little caveat here: Everything I am reporting here is based on scans. I have not had a biopsy of the bone lesions yet. Therefore, we do not KNOW for sure that these are cancer cells. Dr. K says that he's 95% certain that it is cancer. When I ask what else they could be, he doesn't have an answer. That's why I gave him the "thank you". Now we can treat this issue I've been dealing with for almost a year. It really helps psychologically to have a diagnosis.
Here's my summary of all of this yapping I've been doing: A year ago, there were some very small lesions of breast cancer growing in my pelvis. They weakened the bone so that when I ran, it fractured. All of the scans after that had too much swelling from the fracture to see the little tumors growing. Now that the swelling has gone down, we can see the 4 lesions.
Or in other words, last summer, I was trying to stretch and foam roll in order to make some cancer go away.
Monday, May 16, 2016
The Best Bone Mets Ever
This is the hardest kind of blog post to type. I'm going to make you sad and I don't want to.
For a few months, I've known about signs that the breast cancer is back. In fact, for almost a year*, my body hasn't been quite right. I've lain awake in bed thinking about the what ifs. Paul and I have talked about being on the wrong side of the odds and we've met others who are parents with cancer. So we're prepared. You're not.
Last Wednesday, my oncologist told us with relative certainty that the four lesions we're seeing on a pelvic MRI are metastatic breast cancer. My first response was, "Thank you." Why? Because it's been months of uncertainty and questions. Finally, we had a truthful answer. "Thank you for your honesty," I repeated.
So, while you're reading this and maybe tearing up or feeling sad for us, know that you are worse off than we are right now. The girls know and they're outside playing with their friends. I'll be going on a field trip with the first graders tomorrow and driving to lacrosse and gymnastics later this week. We're okay.
The facts: What I now have is stage 4, metastatic breast cancer in my pelvis. The cool way to say it is "bone mets". I am aware that as of 2016, this is incurable and I'll most likely die from it. But I'm also aware that oncologists have a wealth of knowledge that they didn't have even a few years ago. If you try to google, you'll get bad news about life expectancy, but keep in mind that those statistics include people who already died before new treatments were available. So actually, I do not recommend that you google at all.
Here's what we're doing about my bone mets right now. We're assuming that these are the same type of cancer cells that I had back in 2012, meaning they grow on estrogen. So we will continue to suppress my ovaries with injections of a drug called Lupron. Then I will continue to take a drug called Femara which bonds to any leftover estrogen before it can find the cancer cells. The new treatment I will get is an infusion called Zometa. This doesn't actually fight the cancer in my bones, but it strengthens my bones so that as cancer cells try to grow, the bone cells are stronger and don't let them take over.
My first Zometa infusion is on Wednesday. This is not a lose-my-hair-and-puke kind of drug. I guess I might feel like I have the flu for a few days afterwards. Then back to normal life. A one-degree-of-separation friend had been on Zometa for 7 years and just recently had the cancer spread to her lungs, so hopefully taking Zometa will give Joe Biden time to cure cancer before I get any more mets.
I'll also be visiting Dana Farber in Boston for a second opinion, so we're covering all bases. Then I'll continue to be Mommy and go on family trips and be Mott Road's HSA (PTA) president. So don't be sad for us. Maybe just go outside and play.
*Long story of what's been going on for the past year to come soon.
For a few months, I've known about signs that the breast cancer is back. In fact, for almost a year*, my body hasn't been quite right. I've lain awake in bed thinking about the what ifs. Paul and I have talked about being on the wrong side of the odds and we've met others who are parents with cancer. So we're prepared. You're not.
Last Wednesday, my oncologist told us with relative certainty that the four lesions we're seeing on a pelvic MRI are metastatic breast cancer. My first response was, "Thank you." Why? Because it's been months of uncertainty and questions. Finally, we had a truthful answer. "Thank you for your honesty," I repeated.
So, while you're reading this and maybe tearing up or feeling sad for us, know that you are worse off than we are right now. The girls know and they're outside playing with their friends. I'll be going on a field trip with the first graders tomorrow and driving to lacrosse and gymnastics later this week. We're okay.
 |
| This picture of me was taken two days after finding out about my bone mets. I'm okay. |
Here's what we're doing about my bone mets right now. We're assuming that these are the same type of cancer cells that I had back in 2012, meaning they grow on estrogen. So we will continue to suppress my ovaries with injections of a drug called Lupron. Then I will continue to take a drug called Femara which bonds to any leftover estrogen before it can find the cancer cells. The new treatment I will get is an infusion called Zometa. This doesn't actually fight the cancer in my bones, but it strengthens my bones so that as cancer cells try to grow, the bone cells are stronger and don't let them take over.
My first Zometa infusion is on Wednesday. This is not a lose-my-hair-and-puke kind of drug. I guess I might feel like I have the flu for a few days afterwards. Then back to normal life. A one-degree-of-separation friend had been on Zometa for 7 years and just recently had the cancer spread to her lungs, so hopefully taking Zometa will give Joe Biden time to cure cancer before I get any more mets.
I'll also be visiting Dana Farber in Boston for a second opinion, so we're covering all bases. Then I'll continue to be Mommy and go on family trips and be Mott Road's HSA (PTA) president. So don't be sad for us. Maybe just go outside and play.
*Long story of what's been going on for the past year to come soon.
Friday, December 27, 2013
Running and Reality
When you last heard from me, I promised to post explaining the joyous occasion of my first braless run. On October 30, three weeks and two days after flatty-flattening surgery, I laced up my sneakers and jogged 3.12 miles along the Erie Canal trail. However, I didn't blog about it because reality got in the way.
A week prior to that, my friend and fellow runner Mary had taken her 3-year-old to the pediatrician with a fever and tummy ache and within 24 hours was a mother of a child with cancer. As I jogged and tried to analyze whether my unsupported chest was jiggling at all*, my mind kept being drawn back to Mary. She has always followed this blog and commented with wonderfully supportive and encouraging words. I could imagine that she'd have been one of the first to "like" my braless run post and would have smiled a little and thought of me as she pulled on her sports bra the next day for her run.
Suddenly, my run was irrelevant. Mary and her family would be facing surgery, chemo, radiation, and a lifetime of worry about a beautiful little boy. I couldn't sit down and write a whimsical post.
It's now been more than two months of silence on my blog. Life has been moving on for both Mary and me. Her son has one less kidney, 8 radiation treatments under his belt, and no hair due to his ongoing weekly chemo infusions. I accepted a challenge from another friend, via Runner's World, to run at least a mile a day each day between Thanksgiving and New Year's Day. But again, I have to default to what matters and write about cancer and not me "streaking".
As much as childhood cancer (and all cancer) sucks, and I cannot pretend to know what it's like to watch a child go through what I did, the "Best Breast Cancer Ever" has put me in a unique position. I've been there. Quite recently, in fact. Although I still sometimes sit in front of my computer screen trying to figure out what in the world to say to Mary, I hope I can make her feel less alone in this cancer reality. I can give her specific hints or time my well-wishes based on my experience. Honestly, I'm paying it forward. My friend Lisa in North Carolina somehow always knew the right thing to say during my treatment, as she'd been there long before I was.
While Mary is still living this active cancer treatment lifestyle - going through the motions of everyday life while working chemo infusions into the family's schedule - I'm in a bit of a post-treatment limbo, which brings me to a second reality story.
There are many other women who had/have breast cancer and choose to blog. Seriously, there are thousands of them. When I first started googling to find women who had been through what I experienced, I found an abundance of blogs where the writer is stage 4 - incurable (metastatic) breast cancer. At first, I avoided them because they are the scary reality of what I may experience someday. But once I finished treatment, I felt I had to educate myself and learn from these women.
One of the most popular stage 4 bloggers is a woman with an elementary school aged son who had a similar diagnosis and treatment to mine. She finished her 5 years of tamoxifen and breathed a sigh of relief that she'd passed that arbitrary milestone. Soon afterwards, an old injury of hers (I think a broken rib or something) started bothering her. She didn't think much of it but mentioned it to her doctor who did some precautionary scans. She was shocked to find out that her breast cancer was back, this time in her bones and lymph nodes.
Upon reading her story, I vowed to take everything about my body seriously, and I just had my first experience to find out whether my oncologist will do the same.
My whole adult life, I've had monthly migraines (you know which time of the month, right?) that can be as bad as 7 or 8 on the pain scale. They occur on the right side of my head and can usually be controlled with Excedrin-the-wonder-drug. In early December, I started each day thinking I was getting that headache. It was always on the right, but always dull. By mid-day, I'd be surprised that the headache never progressed beyond a 2 or 3 on the pain scale. For two weeks, this happened every day, and I was feeling lucky that I hadn't had a bad migraine.
Last Friday, I suddenly thought more about these, ahem, lucky migraines. Every day for 2 weeks? My goodness! It must be a brain tumor! By the end of the day, I noticed that my right ear was clogged as well! That tumor must be huge! And Google confirmed that the 4th most likely place for breast cancer to metastasize to is the brain! I went to bed on Friday night with a full-blown migraine.
This Monday, I called Dr. Kirshner, who DID take me seriously. Actually, I never had to speak to him. I called and left a message with the nurse, and within hours I was scheduled for a brain MRI on Thursday morning. (It probably would have been sooner but there was that whole Christmas thing in between.)
I'll skip over the three days more days of analyzing how bad this tumor was and planning how long I have left to live, and report with the exact words the nurse said on the phone about an hour after I left the MRI center: "MRI looks great. Nothing going on in there." (Celebrate the news and then giggle with me that she was actually referring to my brain. Hahaha!)
Despite the fact that I'm usually the most rational of people, my new reality is that I have to be this ridiculous and call the oncologist about a minor headache. Everything is serious, or can be. This is how Mary will be thinking about her son, too. That's the reality for a cancer patient.
* Now about that run: I only noticed the braless thing for the first 10 steps or so. Nothing was jiggling since there's nothing there to jiggle. What I DID notice is that my tummy jiggles when I run. I'm sure it always has, but the large bouncing breasts always distracted me from noticing. Now, I have found that I want to suck in for my whole run to prevent tummy bounce. Probably good for my abs, huh?
A week prior to that, my friend and fellow runner Mary had taken her 3-year-old to the pediatrician with a fever and tummy ache and within 24 hours was a mother of a child with cancer. As I jogged and tried to analyze whether my unsupported chest was jiggling at all*, my mind kept being drawn back to Mary. She has always followed this blog and commented with wonderfully supportive and encouraging words. I could imagine that she'd have been one of the first to "like" my braless run post and would have smiled a little and thought of me as she pulled on her sports bra the next day for her run.
Suddenly, my run was irrelevant. Mary and her family would be facing surgery, chemo, radiation, and a lifetime of worry about a beautiful little boy. I couldn't sit down and write a whimsical post.
It's now been more than two months of silence on my blog. Life has been moving on for both Mary and me. Her son has one less kidney, 8 radiation treatments under his belt, and no hair due to his ongoing weekly chemo infusions. I accepted a challenge from another friend, via Runner's World, to run at least a mile a day each day between Thanksgiving and New Year's Day. But again, I have to default to what matters and write about cancer and not me "streaking".
As much as childhood cancer (and all cancer) sucks, and I cannot pretend to know what it's like to watch a child go through what I did, the "Best Breast Cancer Ever" has put me in a unique position. I've been there. Quite recently, in fact. Although I still sometimes sit in front of my computer screen trying to figure out what in the world to say to Mary, I hope I can make her feel less alone in this cancer reality. I can give her specific hints or time my well-wishes based on my experience. Honestly, I'm paying it forward. My friend Lisa in North Carolina somehow always knew the right thing to say during my treatment, as she'd been there long before I was.
While Mary is still living this active cancer treatment lifestyle - going through the motions of everyday life while working chemo infusions into the family's schedule - I'm in a bit of a post-treatment limbo, which brings me to a second reality story.
There are many other women who had/have breast cancer and choose to blog. Seriously, there are thousands of them. When I first started googling to find women who had been through what I experienced, I found an abundance of blogs where the writer is stage 4 - incurable (metastatic) breast cancer. At first, I avoided them because they are the scary reality of what I may experience someday. But once I finished treatment, I felt I had to educate myself and learn from these women.
One of the most popular stage 4 bloggers is a woman with an elementary school aged son who had a similar diagnosis and treatment to mine. She finished her 5 years of tamoxifen and breathed a sigh of relief that she'd passed that arbitrary milestone. Soon afterwards, an old injury of hers (I think a broken rib or something) started bothering her. She didn't think much of it but mentioned it to her doctor who did some precautionary scans. She was shocked to find out that her breast cancer was back, this time in her bones and lymph nodes.
Upon reading her story, I vowed to take everything about my body seriously, and I just had my first experience to find out whether my oncologist will do the same.
My whole adult life, I've had monthly migraines (you know which time of the month, right?) that can be as bad as 7 or 8 on the pain scale. They occur on the right side of my head and can usually be controlled with Excedrin-the-wonder-drug. In early December, I started each day thinking I was getting that headache. It was always on the right, but always dull. By mid-day, I'd be surprised that the headache never progressed beyond a 2 or 3 on the pain scale. For two weeks, this happened every day, and I was feeling lucky that I hadn't had a bad migraine.
Last Friday, I suddenly thought more about these, ahem, lucky migraines. Every day for 2 weeks? My goodness! It must be a brain tumor! By the end of the day, I noticed that my right ear was clogged as well! That tumor must be huge! And Google confirmed that the 4th most likely place for breast cancer to metastasize to is the brain! I went to bed on Friday night with a full-blown migraine.
This Monday, I called Dr. Kirshner, who DID take me seriously. Actually, I never had to speak to him. I called and left a message with the nurse, and within hours I was scheduled for a brain MRI on Thursday morning. (It probably would have been sooner but there was that whole Christmas thing in between.)
I'll skip over the three days more days of analyzing how bad this tumor was and planning how long I have left to live, and report with the exact words the nurse said on the phone about an hour after I left the MRI center: "MRI looks great. Nothing going on in there." (Celebrate the news and then giggle with me that she was actually referring to my brain. Hahaha!)
Despite the fact that I'm usually the most rational of people, my new reality is that I have to be this ridiculous and call the oncologist about a minor headache. Everything is serious, or can be. This is how Mary will be thinking about her son, too. That's the reality for a cancer patient.
* Now about that run: I only noticed the braless thing for the first 10 steps or so. Nothing was jiggling since there's nothing there to jiggle. What I DID notice is that my tummy jiggles when I run. I'm sure it always has, but the large bouncing breasts always distracted me from noticing. Now, I have found that I want to suck in for my whole run to prevent tummy bounce. Probably good for my abs, huh?
Monday, October 14, 2013
Ugly and Perfect
I'm going to start this blog post with something I wrote to a friend after she emailed me to ask about how I'm recovering from last week's surgery:
"I'm loving this little/no boobies thing! It's ugly (stitches and symmetry-wise), but it's perfect for me. I've been so sick of my boobs and worrying about them that it's a relief to have them GONE. And my body is now so used to being cut and stitched, that I've barely had to slow down this week. I hope I don't sound fake-chipper, like everything's great but it's really not. I am truly just plain old thrilled to get on with my life."
I actually don't even think that paragraph fully describes how tremendously wonderful I'm feeling about my decision. Why did I ever go for reconstruction in the first place? Actually, I do know the answer to that. I wanted the doctors to make my cancer go away immediately, so when they told me what is usually done, I simply said, "Do it." Most women want reconstruction, so the doctors told me it would be easier to do it up front. Now, a year-and-a-half later, I've had time to think about who I really am. The real Shari never needed fake boobs in the first place. I'm SO happy to have them gone.
HOWEVER, something I left out in my emotional posts trying to accept my cosmetic/corrective surgery last week was a description of the reality of what I would look like after my reconstruction was reversed. Paul and I were quite aware of how flat I'd be, but since that doesn't matter to us, I didn't even think of describing it here. Now that it's done, I want to prepare you for the pictures you know I'm going to share.
I'll begin by linking you to another non-reconstructed woman. During the summer of 2012, that bummer summer when I was enduring biweekly chemo treatments, I read a few stories about Jodi Jaecks, a woman in Seattle who wanted to swim topless after undergoing a bilateral mastectomy. She did eventually win the right to do so, and not surprisingly, she was willing to be pictured in a local paper without her breasts. She's really skinny, so I knew I wouldn't look quite like her, but it gave me a starting point as to how to picture myself.
For reference, here's a shot of me that shows the boobs before the best breast cancer ever. Note, this was before I started taking naked pictures of my breasts. And the hunchy posture was because I was talking to 2-year-old Reese in the chair next to me. But it gives a good view of the 36Ds while they were still growing the breast cancer.
Now here's the after picture, a bit blurry due to 4-year-old Reese's photography skills. I've been reading from other flat post-mastectomy bloggers that the most common comment I can expect is about having lost weight. In truth, I'm almost exactly the same weight in both pictures, but in better shape now.
Before I show the nakey picture, I want to tell my closing story, so people who don't want to look can just click away after the punchline. As you can see, I have a little tube coming out of the bottom of my shirt leading into the black fanny pack. That is a drainage tube, and in the fanny pack is a little bulb that holds the blood and fluid that drains out of my body. The other day I had this conversation with Paul:
Me - "As much as I loathe having this drain and I'm counting the minutes until it comes out, I'll actually miss having a fanny pack. It's such a perfect size to carry wallet, keys, phone and pen without having to bring a purse."
Paul - "You know, honey, you don't have to have a drain in to wear a fanny pack."
Newly boobless me - "Yeah, but that would look weird."
(That was the punchline, so people who don't want to see my boobs, please click away now.)
Here's ugly but perfect me!
"I'm loving this little/no boobies thing! It's ugly (stitches and symmetry-wise), but it's perfect for me. I've been so sick of my boobs and worrying about them that it's a relief to have them GONE. And my body is now so used to being cut and stitched, that I've barely had to slow down this week. I hope I don't sound fake-chipper, like everything's great but it's really not. I am truly just plain old thrilled to get on with my life."
I actually don't even think that paragraph fully describes how tremendously wonderful I'm feeling about my decision. Why did I ever go for reconstruction in the first place? Actually, I do know the answer to that. I wanted the doctors to make my cancer go away immediately, so when they told me what is usually done, I simply said, "Do it." Most women want reconstruction, so the doctors told me it would be easier to do it up front. Now, a year-and-a-half later, I've had time to think about who I really am. The real Shari never needed fake boobs in the first place. I'm SO happy to have them gone.
HOWEVER, something I left out in my emotional posts trying to accept my cosmetic/corrective surgery last week was a description of the reality of what I would look like after my reconstruction was reversed. Paul and I were quite aware of how flat I'd be, but since that doesn't matter to us, I didn't even think of describing it here. Now that it's done, I want to prepare you for the pictures you know I'm going to share.
I'll begin by linking you to another non-reconstructed woman. During the summer of 2012, that bummer summer when I was enduring biweekly chemo treatments, I read a few stories about Jodi Jaecks, a woman in Seattle who wanted to swim topless after undergoing a bilateral mastectomy. She did eventually win the right to do so, and not surprisingly, she was willing to be pictured in a local paper without her breasts. She's really skinny, so I knew I wouldn't look quite like her, but it gave me a starting point as to how to picture myself.
For reference, here's a shot of me that shows the boobs before the best breast cancer ever. Note, this was before I started taking naked pictures of my breasts. And the hunchy posture was because I was talking to 2-year-old Reese in the chair next to me. But it gives a good view of the 36Ds while they were still growing the breast cancer.
Now here's the after picture, a bit blurry due to 4-year-old Reese's photography skills. I've been reading from other flat post-mastectomy bloggers that the most common comment I can expect is about having lost weight. In truth, I'm almost exactly the same weight in both pictures, but in better shape now.
Before I show the nakey picture, I want to tell my closing story, so people who don't want to look can just click away after the punchline. As you can see, I have a little tube coming out of the bottom of my shirt leading into the black fanny pack. That is a drainage tube, and in the fanny pack is a little bulb that holds the blood and fluid that drains out of my body. The other day I had this conversation with Paul:
Me - "As much as I loathe having this drain and I'm counting the minutes until it comes out, I'll actually miss having a fanny pack. It's such a perfect size to carry wallet, keys, phone and pen without having to bring a purse."
Paul - "You know, honey, you don't have to have a drain in to wear a fanny pack."
Newly boobless me - "Yeah, but that would look weird."
(That was the punchline, so people who don't want to see my boobs, please click away now.)
Here's ugly but perfect me!
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