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!
“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.
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.