Tag Archives: advocacy

Changes

The last two months in Cancerland have been challenging. The week before Thanksgiving my pain levels increased dramatically. It is still hard for me to process how quickly I experienced such a dramatic change in my quality of life. My back started to hurt a lot. I experienced spasms every time I tried to stand or get up out of a chair. I couldn’t sit very comfortably either. I was able to get somewhat comfortable if I was in bed with my back elevated and had pillows under my knees. There was no real injury. I think that the levels of cancer in my bones and spine grew to such an amount that nerves started to become involved and I started to hurt more.

Currently, my whole torso is painful and I’m still in pretty much the same place pain wise. Both sides of my rib cage are extremely tender and it hurts to take a deep breath. My back is hurting everywhere and I have issues with trying to stand. If I stand for more then 15 minutes it feels like my spine has disappeared and the muscles in my torso are straining to hold me up. Thankfully, I see the Nurse Practitioner who handles pain management and palliative care in our clinic tomorrow. I’m hopeful we can come up with a pain management plan that will work. I know I’m also going to have to get better at taking pain meds and being honest about how much pain I am in. We have such a problem with opioids and addiction right now in our society. I think that once again, we keep trying to treat it one way or the other when there are lots of gray issues in between. There’s a whole other blog post on the number of times I’ve almost been denied pain meds. It makes me laugh a little because part of my problem is I try so hard to not take too many. I’ve also been trying CBD in different forms. I’m hoping to find a way to have that be helpful also.

I had scans the end of November which showed innumerable mets in my spine, pelvis and hip area. The cancer has grown quite a bit more from my scans just a month before.

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A little Er visit this month

I did see the High Wizard and he consulted with my Wizard. They both reviewed the results of my Foundtion One testing. I don’t have any mutations that are unusual. The course of treatments we’ve been doing have been the best treatments to use with my cancer. It’s a little disappointing to not have found a magic bullet to use, but I didn’t expect to find one either. We decided to circle back and try the CDK4/6 drugs again. CDK 4 and 6 are proteins which help to control how fast cells grow and divide. They work for both healthy cells and cancer cells. In metastatic breast cancer they aren’t working right which is what is causing the cancer cells to grow, divide and spread. CDK4/6 drugs inhibit the growth of these proteins and try to slow down the spread of the cancer cells. I’ve been on this type of drug twice before (Ibrance). You see many commercials about these drugs on TV. The women are always smiling and going about living with mbc like it’s no big deal. I really hate these commercials. They are so misleading.

This time instead of Ibrance I’m trying Verzenio. It’s a cdk4/6 inhibitor, just made by a different drug manufacturer from Ibrance. The High Wizard has had some success with people reacting favorably with one of these drugs when another one didn’t work. I’m also getting the aromatase inhibitor shots again, or Faslodex. You’ll remember the big, honking needles. So fun. Interesting fact, Verzenio is a mere $11,372.00 a month. Combine that with the shots which are about $4500 a pop and I’m an expensive cancer patient. Don’t get me started on insurance. I believe it is a basic human right. I know women who have to choose every month to keep a roof over their head for their children or take their meds.

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These babies hurt

Last month my tumor markers had increased to an all time high. If the med switch doesn’t work we will probably swing back to adriamycin. My heart has recovered from the damage that occurred previously while on it and my cardiologist feels very comfortable with me taking more then the recommended life time amounts. Once again we’ll be balancing heart damage with beating back crazy, fast growing cancer cells.

On the good news side of things, whatever spot was in my liver before doesn’t appear to be actively growing right now. It’s just the cancer in my bones which seems to be growing crazy fast.

I’m due to get tumor markers tomorrow to see if this course of treatment has helped at all. I don’t want to be discouraging, but based on my pain levels I’m going to guess it’s not working. I’ll let you know.

It’s been a discouragingly hard and wonderful last few weeks. Hard because the side effects and pain haven’t been fun. I’m throwing up more then I ever have since having cancer. The most common side effect with Verzenio is diarrhea. Yep, they don’t show Alice smiling through that one in the commercials. Couple that with constipation from increasing pain med dosages and my poor colon is wishing for a break. Also, at times the pain has been almost unbearable and I’ve had to fight back the fear that I won’t be able to do this. I’ll get help with that tomorrow. I have faith in my med team and know that they’ll do whatever they can to help manage my pain. I just have’t had a chance to get in there and talk through a plan yet.

I wasn’t able to cook any of our holiday meals. But it was absolutely wonderful to have my families help in doing it all. They did a great job of suffering through me barking commands and they did ALL of the dishes! I did still manage to “flame the sauce” for our Christmas Beef Wellington. It made me happy to know it all was fantastic and they did a great job. It means traditions can carry on without me.

 

I’m not able to drive anymore. I’m on way too many pain meds, and I’m in so much pain that it’s pretty difficult. Once in awhile I’ll hold off on pain meds to drive one mile up to the corner, but I can’t and don’t do that very often. It’s really difficult to loose that freedom.

It was heartwarming to have all of the kids and other family home for Christmas. But, it also was heartbreaking knowing how much heartache I was causing the people who love me when they saw how much pain I was in and how difficult it’s getting for me to move. I wish I could hide that one better and protect them more.

I say the last weeks have been wonderful, because once again I’m overwhelmed with gratitude at the amazing and loving friends and family I have in my life. People have been driving me to PT appointments, they take me to run errands, they’ve been bringing us meals and put up Christmas decorations for me. They take me to the doctor and lab appointments. It’s been wonderful. But it’s hard too. I just keep reminding myself that I would be doing the same for them if things were reversed. Being able to accept help is a lesson all of us need to learn. It makes us vulnerable, but also teaches us to trust the people who care about us. It teaches us humility and gratitude. Both qualities that I’ve found are important.

This is going to be a challenging year. It may well be my last. In fact I’ll be totally surprised if it isn’t. We don’t talk about death enough. It’s funny how afraid we can be of something that is going to happen to every single one of us. I’m going to talk about it. I’ve already started talking about it with the people who love me. I don’t want to be unprepared and I don’t want the people I care about to have to be worrying about what I want or don’t want because I didn’t talk to them about it. Just because I’m going to talk about dying doesn’t mean that I’m not going to do everything I can to not die. I want to find that balance. The realistic optimist in me needs to plan and acknowledge whats likely to happen. But, the optimist in me will keep hoping that the treatments will work and I’ll have some more time to spend with those I love.

Do me a favor this week and go move your body and enjoy being able to to it. Take a long walk and be proud of your body for moving and getting you around every day. Relish the fact that you can get out of bed pretty easily and make it to the bathroom when you need too. Enjoy a glass of wine for me and a night out with people you love. (I’m so sad that wine is just not tasting good.) Have a donut in moderation and then eat healthy too. Be happy this week and be kind. Buy someone’s coffee in line behind you or help a stranger. Give something useful to a homeless person. Grab some socks at the dollar store or some good protein bars and keep them in your car to hand out. If you feel like donating then donate to a cause that means something to you. Make a positive difference in the world this week!

 

When Will You be Done?

This is the question I hear most frequently from people.  They see my hair growing back and assume either I’m done with treatment, or must not be going through treatment at the moment.  The answer is, I will never be done treating for metastatic breast cancer.  If I am “done” with treatment, it will mean that I’ve decided the disease has progressed so far and fast that treatment will do nothing but further diminish the quality of my life.  At that point, I’ve decided I won’t put myself through the side effects and will spend the time I have left with my family.  I’m already considered an “exceptional responder” in that I’ve survived more than 5 years with mbc.  The odds of that are only 1 in 4.

I am still actively treating.  Currently, I’m on an IV drug called Gemzar or gemcitabane. The side effects include flu-like symptoms, fever, nausea, fatigue, and lowered platelet counts. Hair loss is minimal and mostly consists of hair thinning.  I have treatment once a week for 3 weeks and then have one week off.

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Treatment starts

The off week happens because usually, after 3 rounds my blood counts have lowered to the point that it would be dangerous for me to have another treatment.  The off week gives my body a chance to recover and get ready to do it all over again.  My last scans showed that this treatment is holding things steady.  It doesn’t mean that the cancer is gone or has gotten less severe. It means that the chemo is keeping things in check and more or less, nothing new has grown.  I have a few new spots, but they are small and some other spots have gotten a bit better.  So, the fire wall is holding and we are keeping things at a nice, slow, contained burn.

 

In the meantime, I do what I can to support my body and me.  There is no magic or nutritional cure for cancer.  You can support your body and immune system, and I do. But eventually, the cancer will outsmart your immune system and spread.  This doesn’t mean I give up and don’t do what I can to help myself.  I like to say I’m a “realistic optimist” and I do all kinds of things nutritionally and otherwise to support my mind and body.

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How I look a few hours later. Blaghh.

I’m fully aware of reality and what can happen.  I’m just hoping it doesn’t happen for a long time. That’s one of the scariest parts of living with the unpredictability of this disease. Things can happen so quickly.  Even though my scans look stable there is a tiny part of me still nervous.  This is because I have lobular breast cancer and my tumor markers are at one of their highest points ever. Usually, when a chemo is really working, my markers will go down. Lobular bc is notoriously hard to see on scans.  It grows in sheets, or fingers instead of compact tumors.  Which makes organ involvement harder to spot.  But for today, I’m good and I’ll stay with that!

 

Despite being on Gemzar I’ve been busy.  I’m not sure how chemo side effects and timing have worked out so well, but they have.  We’re gearing up for Ladies Midsummer Wine Night, our annual fundraiser for mbc research.  This year we hope to break the $100,000 mark!  I also gained a greater understanding for why supporting small research grants is so important.  In my enthused, energetic chemo break last winter I applied to be a consumer advocate for the DOD Breast Cancer Research Program.  I was accepted and served on a committee looking at incoming research grants.  I’ve never been in a room with so many MD/PhD labels! IMG_2492 Before research grants can apply for certain funding levels, they have to support their proposal with preliminary data.  Many researchers have fantastic ideas, but don’t have the funding to gather this preliminary data and take their ideas to the next funding level.  This is what Team Judy helps to support with our mbc grants.  We choose a researcher to support at the Masonic Cancer Center, University of Minnesota, so they can gather their preliminary data in order to apply for the larger DOD and NIH grants.  It’s disheartening when you realize how few research dollars goes towards metastatic research.  Over 1600 Americans die every day from metastatic cancer.  We must find a way to figure this out.  It’s also why I was happy to participate on a panel at the University of Minnesota Cancer Moonshot event on June 29.

IMG_2470Too many Americans are dying from cancer. We need to collaborate and share the data that comes out of publicly funded research grants.  Often times, large institutions delay in sharing their data.  That’s not cool, so to speak. We also need to look at all sides of the problem.  We can’t just focus on prevention and treatment of curable cancers.  If we don’t understand how cancer metastasizes then we are missing vital pieces of the puzzle and won’t have a clear picture on how to control metastatic disease.  If you’d like to help Team Judy support metastatic breast cancer research grants you can donate to our crowdfund page.  100% of what we raise goes directly to the labs of researchers at the Masonic Cancer Center, University of Minnesota.

 

108 Every Day

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.