Yesterday I celebrated my 53rd birthday, my fourth birthday since being diagnosed with metastatic breast cancer (mbc). While I was able to celebrate another year of life, 108 others with mbc in the United States died. Today, another 108 people will be robbed of their next birthday and tomorrow 108 more. Each and every day 108 mothers, sisters, friends, cousins, husbands, brothers and sons with metastatic breast cancer die. It has to stop.
This past weekend I attended the Living Beyond Breast Cancer conference in Philadelphia with over 300 others with mbc. The conference began by asking those in attendance to stand up according to the number of years they have been living with mbc. First, those diagnosed 2 years and less stand, then those diagnosed 2-5 years ago and then 10 years or more. The largest number stand for 2 years or less. By the time we get to 10 or more years there are only a handful standing. We clap and applaud these exceptional outliers, each of us secretly hoping that will be us some day, but knowing the reality is unlikely. From 2000-2013, 15 billion dollars was raised for breast cancer research, but of that 15 billion less than 7% was spent on research for metastatic breast cancer. You can read the study in its entirety on the MBC Alliance website. This year the LBBC conference trained its first group of Hear My Voice advocates, but advocacy takes time and time is one thing people with mbc don’t have, so out of frustration a die-in was organized, Why I Organized a Die-In, and Philadelphia Story. 108 of us gathered together and got down on the floor. We closed our eyes; some of us holding hands, and recognized our greatest fear. It was hard, really hard, lying there and knowing that one day I would most likely be one of the 108. I lay there thinking about all of the things I was probably going to miss, my son’s graduation from med school, grandchildren, vacations, all of the milestones and memories that make life so precious. I thought of the increasing number of young women being diagnosed with mbc and what was going to be taken from them. The picture of us is dramatic, uncomfortable, but mbc is not pretty. It’s hard to visualize the reality of living and dying with mbc when others look at me. I don’t look sick. There is a lack of congruence when you see me and think of the 108 who die each day. But when I was on the floor with those other 107 the reality became evident. My hope is that someday mbc will become a chronic illness, similar to what we’ve been able to do for AIDs. People with mbc are starting to develop their voice, I hope the world starts listening.
It’s been a crazy week. Last Wednesday we meet with my oncologist to go over my blood work and scans. My scans didn’t show any major progression, but my tumor markers were almost as high as they’ve ever been. There are many different kinds of breast cancer. I have lobular breast cancer and one of the characteristics of lobular breast cancer is that it tends to grow in a more diffuse pattern and it can be much harder to detect its spread in ct/bone scans. Tumor markers don’t tell the whole story either. For some people they are totally unreliable. However, in my case we have 9 years of data on my markers and know that they are a pretty good indicator of what’s happening in my body. I’ve also been having some more pain in my back and other areas. All of this information put together lead my oncologist to determine that the current drug I’m on is not working. I agree. Problem is, the next course of action is IV chemo. There is one new drug that was just approved this month called Ibrance or pablociclib, but the chances of it being available and approved by insurance were very, very slim. So, I was scheduled to have a port placed in my chest this morning and to begin my first round of Abraxane. I’d receive an infusion once a week for 3 weeks and then have one week off. This would continue indefinitely. One of the major side effects of Abraxane is hair loss. Darn! I was ready for moving to IV chemo, I knew that was the next line of treatment, but I hadn’t quite prepared myself for being bald again. I didn’t wear a wig last time, but this time I went to the wig store on Saturday and was fitted for a wig, then I called my hair stylist and scheduled an appointment for this Friday to have my hair cut short. You usually lose your hair within 3 weeks or so on Abraxane and having it cut short now would make it easier for me when it started to fall out. On Monday my doctor called me back. He had been talking about my case with other doctors in the oncology clinic and one of them had just been able to obtain Ibrance for a patient in the clinic. Hold everything! So, we decided to cancel the surgery for this morning and see if we could obtain the drug. Ibrance is a new oral drug that works differently from other aromatase inhibitors I’ve been taking. Most drugs currently available for er/pr+, Her2- breast cancer target the hormone receptor pathways and try to disrupt those pathways. Ibrance takes a different approach and targets a family of cell proteins (CDK4/6) that are responsible for cell growth and stops those cells from dividing. Well, I just received the call today that insurance has approved my trying this drug. Whew!!! Talk about in the nick of time! Need I say more about the importance of additional research for metastatic breast cancer and treatments? It’s unlikely that when this drug stops working there will be another newly approved drug to take its place and I will have to start IV chemo. But for now I’ve been given a period of grace. There will still be side effects and I’m hoping I handle them well. I’m heading to Europe in April and for me this is all about quality of life and being able to have a great trip with my friends and my son. We’ve talked about this trip for years. We had always said that when he was accepted into med school we’d go to Europe together. It was making me pretty sad to think that the pictures he would have for memories would be ones of me in a hat or scarf and looking like a cancer patient. I’m pretty happy with flying under the radar sometimes. It’s funny how having your hair allows you to look normal and healthy even though you are far from it. So today I was grateful that I was at the club exercising instead of waking up in the recovery room and then heading over to oncology for my first infusion!
It’s scan day. A day most everyone with cancer dreads. We even have our own word for it “scanxiety”. Normally I sail through these days. But today feels different. I think it’s because the last few scans have been pretty darn good, very little progression shown in terms of cancer growth, we’ve been holding things at bay. But, I’ve had issues with my drugs lately, and even with the last one we’ve had to reduce the dosage because of side effects I’ve been having. So I wonder “has it been enough?’ Each time I get in one of those tubes I think about where those cancer cells may be hiding. I talk to my body and tell it to spill all. No hiding those buggers anywhere. I think about my immune cells and what they’ve been doing to help me. I think about how well the rest of my body has been dealing with the rogue faction and say a little “thank you.” I also experience a wave or two of pure fear and worry. It’s not a unique perspective, but I feel like I’m playing Russian Roulette. Each time I have a clean scan I know the odds are higher that the next one won’t be that way. There’s no place like the inside of a huge metal tube to have a little anxiety attack. That’s when I probably have the best little talks with myself. “Remember to breathe” I say. “Remember to think of things to be grateful for” I quietly sigh. And that’s when I bring you all into the tube with me. I think about the many little things you’ve done to support me and my family and the kind words and cards. It’s another reason I’ve been so grateful to have this time to travel with Steve. I have a few of my favorite views in my head. I’ll see something beautiful and think, “Now that’s a good one to remember during a scan.” So wish me luck today. I’ll be thinking of all of you!
Can’t believe a month has flown by and we’ve gone from a beautiful fall into a hard, cold winter. Boom! After seeing the cardiologist and numerous tests on my heart we figured out a few things. First, I have a strong, healthy heart. Second, the Xeloda drug was causing the arteries of my heart to spasm and giving me angina. I was also experiencing headaches and dizziness which I thought was going to win me a trip to the MRI and a brain scan, but fortunately all of the symptoms went away when I stopped the drug. I also learned a lesson about my self. I tend to minimize any symptoms I have and was forcing Becky to still go on walks with me despite the “heartburn” Thankfully, she still loves me.
So the good news, bad news is I’m fine, but it also means I’ve blown through a treatment option. Next up is the Afinitor/Aromasin combo. Another oral chemo. This one packs a heftier price tag however. $12,000 a month. Yep, $400 a pill. Thank goodness for insurance. Did you see the 60 Minutes segment on the high cost of cancer drugs? Hit home for me. It does make me evaluate how much good I’m putting into the world each day. I say that a little tongue in cheek. I know I’m worth much more than my meds.
Which brings me to compassion. It’s pretty easy to look at me and think everything is great in my world. No one would know that I have a less than 25% chance of living 5 years, that my spine is covered in tumors and I have a few more in my leg. I’m fortunate in that I have a high pain tolerance, and really, if I’m good in what I do I can manage my pain. Fatigue is another invisible thing. Sometimes I’m just wiped, lower than that actually, but you wouldn’t really know it by looking at me. I keep exercising because my doctor’s say that’s better than anything. Even though some days I almost break down on the machines because that’s where I feel what I’ve lost more than most places. I’m officially a wimp, but a stubborn one. I realize how invisible what I’m going through can look to people who don’t know me. Even to people who do know me, really. It got me to thinking about other people I see out and about everyday. At school, at the grocery store, cutting in front of you on the freeway. We know nothing about their stories and what they may be dealing with. I’ve learned that whenever I give a talk about my story to always assume there is someone in the room who is dealing with more. We all have our stories.
It might not be as life threatening, or maybe as large, but to that person it’s everything. We sometimes minimize our own worth and the value of our feelings and emotions. We downplay them and say “we’re fine” when we are really too afraid to reach out. So the next time you see that crabby person, or the dour looking one, or the tired one think about the story that might be there, invisible and in the background and offer a smile, or just a silent word of compassion. We’re all human and it’s our connections that make us so. Remember, we all have hard things, together is what gets us through them.
“I’ve learned that people will forget what you’ve said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
The past few weeks have been interesting, to say the least. My last treatment protocol has stopped working so it’s on to the next option. I’ve just finished my first two weeks of my new drug, Xeloda, which is an oral chemo pill. I take it twice a day for two weeks and then get one week off. I’ve had some nausea, and much more fatigue. My walks have turned into “strolls.” I’ve also had some chest pains which we are trying to figure out. Lot’s of appointments scheduled with the cardiologist this week. I’m hoping that my body is figuring out this new drug and that things will get easier. I think they will. I’m nothing, if not adaptable.
The last weeks have also been full of grief and memories. My wonderful “Uncle Moose” passed away unexpectedly on October 10. Every child should have an Uncle Moose in their life. He was as big in personality as he was in stature. ” 5 ft. 20 1/2 inches” as he’d say. He believed in having fun, lots of crazy fun, but was also extremely safety conscious. He made me feel safe. Whether it was teaching me how to scuba dive, or rappel off a cliff. Those are things I would have never tried without him. I trusted him. We are a family of swimmers, and one of my first memories of Uncle Moose is of him teaching me how to dive. I remember standing, shivering on the end of the diving board. A tall, skinny girl looking down and thinking the water looked a million miles away. But Uncle Moose was there calling to me and letting me know that he would be there to keep me safe. And so I dove. He taught me how to float on my back too. I think of his words often in my current situation. Sometimes, the more we struggle the more we sink. In order to float you have to let go of the fear and anxiety. You have to let go of the unknown. You have to trust that the water will hold you up. You have to have faith.
I remember the first October I survived after initially being diagnosed with breast cancer. It was overwhelming. I was just getting my hair back and I felt like sobbing with grief every time I went into a store and saw another pink display. I was grieving over who I had been, who I was then, and what the future would look like. Now, 8 years later the “pink attack” has intensified to such a degree that I’m tempted to stay in my house for the month. My perspective has changed too. I now have metastatic breast cancer, an incurable and fatal disease. My concept of what breast cancer awareness should be has changed radically. I still remember leaving the doctor’s office after my 5 year check up. I was smiling ear to ear and practically floated into the elevator. There was a woman in the elevator who commented on my happiness and I shared with her that I was done! I was a survivor!
I remember her looking at me and softly saying “Oh, Honey.” I was so annoyed at her. How dare she try to ruin my moment. Now I look back and know she was just wishing she could share with me the truth. There is no magical five-year “safety zone” when you’ve had breast cancer. 25-30% of breast cancer patients will go on to develop metastatic breast cancer and it can be 1, 5, 10 ,15, or even 20 years after your diagnosis. Basically, if you’ve had breast cancer you won’t know if it’s going to kill you until you die from something else. Less than 5% of funds raised for breast cancer “awareness” go towards research of metastatic disease. We need to change our definition of awareness and breast cancer education. Many people still don’t know how to recognize inflammatory breast cancer. People certainly don’t understand metastatic breast cancer. I had no family history of breast cancer. I was diagnosed at stage 1a, I exercised, ate well, did holistic nutrition, yoga, meditation, and followed my doctor’s recommendations to the letter and it still came back. Scary stuff I agree, but we can make it less scary by funding research towards metastatic disease. This creates a safety net for everyone. It provides hope for establishing treatment protocols that can extend life for meaningful lengths of time. Hopefully, we begin to understand how cancer metastasizes so we can prevent it from happening in the first place.
So many people are touched by breast cancer. Breast cancer is the second leading cause of cancer death in women after lung cancer. I understand how as compassionate beings we want to help. We naturally want a standard or rallying cry to bring us together and move us forward. Pink has become that for breast cancer. But please, “Think before you pink” and choose the cause you support carefully. Make your dollars count towards the future and the possibility of extending someone’s life and please choose to fund research of metastatic disease. Here’s our Team Judy video to show you what we do to fund research. Another fantastic organization to fund is METAvivor.
My scans came back basically stable. I have one new lesion in my left femur, but all of the other lesions on my spine have stayed stable. That’s excellent news! It’s what you want to hear from scans. It meant I was able to leave on our vacation without having to change meds and in much better shape physically then I could have been from new side effects. Living with mbc is a crazy ride. The cycle of “scan, treat, repeat” can feel overwhelming. You start living your life in 30 day increments, or whatever period of time there is between scans and doctor appointments. Each time you have a good scan you’re elated, but that’s balanced by the idea that you’ve used up another one of your wishes and the next scan might not be so great. That’s where the constant intentional act of learning how to maintain balance comes in to play. So, here I am, off on an adventure, enjoying each day and taking in as much as I can of the amazing scenery and daily adventures. It’s a little bittersweet though. Each time I leave a place I wonder if I’ll ever be back and if I am, what kind of physical shape will I be in?
Here I sit. Waiting for scan results. It’s not much fun. Somedays I handle it better than others. I keep trying to look inward and make a guess as to what’s going on in my body. Has it spread? Gotten better, stayed the same? All the while trying to live a normal life and keep things in perspective. I seem to live out my life in 30 day increments now. If my markers are looking good I let out a sigh of relief and push things down for another 30 days until the next doctor’s appointment and treatment. It’s a different way to live. I’ve been making travel plans, but my markers are going up and I start to wonder how I’m going to feel in 2 or 3 months. I don’t know for certain. I bought travel insurance for the first time. Seemed like a prudent thing to do. Yep, for me having cancer is like doing Tree Pose. Some days my balance is better then others. When I’m wobbly I have to just accept it and feel what there is to feel. Emotions are ok. There are no good or bad ones. I can be scared, angry, sad, and irritated and it’s all right. There is no “right way” to do cancer. There is only “my way” and I can’t get it wrong. When I’m ready, I’ll push myself up off the floor and choose to be grateful for the little things. I’ll try balancing again and it may be easier, it may not. But I’ll accept myself where I am.
“How do you do it?” I hear it over and over again. How do you live with a diagnosis of metastatic breast cancer and continue to live your life in a positive and productive way? We all have hard things in our lives. All of us. No one has it easy all of the time, but some people do seem to be able to weather the rough water, bumps, obstacles and tough spots better then others. What’s the difference? Sometimes I look at having cancer as trying to learn Tree Pose. In yoga, Tree Pose is when you balance on one foot and lift your other foot and place it somewhere on your opposite leg. As you get stronger and find your center of balance you’re able to place one leg higher, lift your arms higher over your head and find yourself feeling grounded and strong, just like a tree that’s been there forever. The trick is to ground yourself and to not condemn yourself when you loose your balance. If you start to fall you have to let the self-judgement go. The more you talk down at yourself for not finding your balance, the less balanced you’ll be. If you just let it happen, accept where you are that day then you’ll find your center again. It’s curious how this pose can be easier or more difficult from one day to the next. Some days it’s just hard to find that balance, that sense of calm and grounding. Living with a terminal, chronic illness is the same. Some days it’s easy, others it’s hard. There is no magic answer. I have found that the more I choose to be grateful and ground myself in the present moment, the better the day will be. If I’m in pain, I’m tired or I’m frustrated because I’m just not getting everything done that I thought I should be getting done or even wanted to, I need to let it go. Refocus on where I am at and think about what’s good about that very moment. Having gratitude and finding balance isn’t always pretty. Sometimes you just do it because you’ve made a choice to. Somedays I can’t do Tree Pose as well as I used to before cancer. I let that go too. I do the best I can. I forgive myself when I fall and I choose to try again. Sometimes, I let myself stay on the floor for a bit and study where I’m at. Sometimes I pull myself up, other times I have help and a friend reaches out.
I’m going to break the rules right off the bat and admit that this blog isn’t going to be about cancer all of the time. I like to cook, so I might share some food porn and a recipe here and there. I’m also a licensed Parent Educator and I may feel the need to occasionally hop on that soap box and talk about early childhood development. I’ve followed the rules most of my life and I’m spending the last of them trying to be much less compliant. Guess I’m a rebel with a blog.
Here’s the shortened back story. 8 years ago I had a mammogram in December. I was 43 years old. All was clear. About a month later I started having the same dream repeatedly. I’d awaken each night at the same time, agitated and afraid. I would tell myself to remember the dream in the morning. The next day, I’d remember that I’d had a dream, but could never recall any of the details. A few months later in March of 2006, I found a lump in my right breast. Turns out I had invasive, lobular carcinoma. The night after the nurse called with my biopsy results I had the dream one last time and finally remembered it the next morning. I haven’t had the dream since. I dreamt that I was lying in my bed looking up at the ceiling. There was a large, swirling black cloud that was gaining speed and intensity. With a force I could feel, it swooped down and hit me right in the chest. Actually, it hit me right where I found my lump. How weird is that? I’ve learned to trust my intuition and I’ve come to believe that somehow I knew something was going on with my body, but I just wasn’t paying close enough attention. My dog also knew something was up. He started following me everywhere. Like glue. I just couldn’t shake him. It felt like I had a stalker with four paws.
I started out by having a lumpectomy, and then a mastectomy when the doctors had a hard time getting clean margins. I decided on a single mastectomy. There was no lymph node involvement. I was a stage 1 and felt very lucky to have caught things early. I had 4 rounds of A/C chemo and then went on Tamoxifen for 5 years. The hot flashes were hell! A month or two before my 5 year check up I remember noticing that my dog was stalking me again. A little warning bell went off in my head, but I ignored it. I saw my doctor for my five year check up. We did the normal labs, he gave me the all clear and I floated out of the office. I was so HAPPY to think I would never have to see that place again. Two days later the nurse called to let me know that labs were back and my tumor markers were elevated. Que the tragic movie score. Rounds of needles, scans, and phone calls later I learned that the breast cancer had metastasized, or spread to the bones in my spine. I’d gone from a simple stage 1 to stage IV just like that.
This is where you learn that Pink is Complicated. It’s been 3.5 years and I’m still learning. It’s just not as simple, easy and happy as the color sounds. There are many different kinds of breast cancer and all of them have different treatment options. 30% of all women ( and men get breast cancer too) who are diagnosed with breast cancer will go on to develop metastatic breast cancer. Cancer that stays in your breast doesn’t kill you. It’s when the cancer travels to other areas of your body that you’ve pretty much lost the war. You’ll win battles for awhile, but the reality is that metastatic breast cancer is stage IV and there is no stage V.