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!

 

39 thoughts on “Changes

  1. Judy – we’ve never met IRL but I wanted to tell you how much I appreciate your posts & admire your transparency & true grit in the face of this disease. I lost my beloved Aunt Rachel to MBC & your last paragraph inspired me to pay it forward & spread gratitude & kindness.

  2. Love and support to you my friend always. The grace the you have lived your life with is as beautiful as your soul. I am here to support you and stand by you in any fashion. I am also here to support and stand by your family in the years to come. Love you

  3. Judy … your soul is shining, soaring above the fray, it’s a lot of light out of some of your darkest moments, which makes your generosity heroic … we love you ! Sherry and Artie

  4. Judy,
    Your strength and positive attitude is impressive!!
    Know I lift you up in my thoughts and prayers. You are beautiful inside and out!!
    Love,
    Laurie Burns

  5. Judy, thanks for your post. I’m so glad to see you have access to a a palliative Care Team. Insomwish I did. I’m advocating tomfetbthis access for all Kansans.
    I too thank you for bringing up about talking about death and dying. There are too many people who refuse to talk about this, and then an emergency happens and no family member knows what the person who is in the midst of the emergency wants. These conversations need to
    Happen before it’s needed.
    I am one who prays, so
    I’ll be praying for you to have many more days, weeks, months, and even years to make many more wonderful memories with those you love! I know I will be for as
    Long as I can.
    P. S. I too hate those commercials.

  6. Love you. My bone Mets are advancing. I’m still doing Ibrance, Xgeva, and Faslodex too. All my end-of-life stuff is in a fireproof box – I’ll update my obituary and outline a service later. Thank you for reminding me how lucky I am to walk my dog 4 years into this. Opioids (Tramadol) make me cry too much so I’m trying Tylenol PM instead tonight for the first time. Bone pain makes it hard to sleep enough. Appreciate your thoughtful words. Grateful for you.

  7. Judy…damn I just wish it were different. You have always been so open and honest about how you are processing your journey and it has helped me so much. I will pray for a quick resolution to dealing with your pain and I will also promise to move my body and relish the ease, drink some wine on your behalf and cherish a simple night out. Thinking of you.

  8. I love you Judy. It is sad to hear you facing such pain and rebellion in your body. Cuddle that beautiful bouncy doodle boy of yours ! Let’s hope for a turn around soon❤️🙏🏻❤️

  9. You’ve inspired me. I took for granted my health and body- but knowing that exercise is a)good for me and b)a way to decrease my cancer risk- I’ve dusted off the elliptical – much to the sadness of the twins (it was their pirate ship 🏴‍☠️ and bedecked with scarves and LEGOs).

  10. Judy, you are right about talking about death it’s part of living. But admittedly, I’m a coward when it comes to facing it and looking at the people we love and knowing that it’s coming. I say goodbye to my mom every time I see her it’s heart breaking but we all are part of it. What do you say except I love you. So Judy, I love you! ❤️

  11. Hi Judy, I was given your info and appreciate you truth and strength. I have metastatic lung cancer and try hard to enjoy all of the simple pleasures that yo mention. I had a bad side effect to an immune therapy that left me very immobile. But appreciating the little things I could do, it really helped. I think gratitude and positivity have been my best arsenal so far. I feel the same way about the opioids but still use them when needed as they were truly design for people in pain. I hope you get some good answers from the palliative care nurse.

  12. You are truly an inspiration Judy. Will walk, and donate, and buy coffee this week in honor of you. Saying a prayer for more comfort for you this week and those new meds kicking in! Keep the faith and know you shine so brightly to those that you have not even met yet!

  13. Hi Judy,
    I am so sorry your QOL has taken such a hit the last few weeks and that your pain is so horrible. I hope you can get some relief. You know those commercials you mentioned, I have been meaning to write about them for ages as they drive me nuts and I’m not metastatic. Misleading, no kidding! Your last paragraph is simply beautiful. Thank you for this incredibly candid post. Sending my best wishes and hoping you find comfort.

  14. This is by far the best thing I have ever read. I too have MBC with Mets to the bones. Diagnosed 2 years ago, so far the Ibrance, Faslodex and Xgeva are helping, but the back and leg pains are horrible at times. I also hate pain meds, but sometimes you have no choice.. I can no longer drive either and have lost my balance, so I use a walker to get around. Thank you for posting the real truth. I’ll be praying for you.

  15. Judy , I want to thank you for being such a good friend to our daughter Catherine Maes. You have shown many people how to live thru your many years of fighting cancer. The tears have been way too numerous and the unknown of what is going to happen next is hurting you / your entire family / and your dear friends. I do think you are doing your best to prepare everyone for that dark day of when the Lord has come to take you home. Knowing your group of close friends your leadership skills will be in your hands to set up more school activities / more civic activities for them / always being the great teacher you have been. I’m not afraid for the day I’m called home! You are a wonderful gal Judy! Thank you again Love, Catherine’s Mom

  16. Damn I hate this disease……but I love you Judy. Your strength, grace and humility continue to shine through the darkest of times. Thank you for making such a positive impact on so many people. Thank you for being such a good friend and inspiration to all of us.

  17. Oh Judy, you are so lovely and full of grace. I am so happy for every moment of our friendship. Thank you for all of it!

  18. Judy- I have a new friend in Cathy Maes when she moved into our neighborhood. She shared your story with me and I just finished reading about your journey. You are a strong focused woman and I salute you as you travel the bumpy road of cancer. I walked this road with both my parents and understand what your days are like. The last paragraph you wrote filled me with hope and gladness. I am an indoor cycle coach and will share your uplifting message to everyone I ride with this week- in your honor!

  19. As you shared your story I can feel the love that lives through you and within you. In gratitude and much love. ❤️
    Thank you.

  20. Judy, I don’t know if you remember me..I am Sandy Kittelson’s niece…We spent some time together at my grandfather’s farm many years ago..I am so sorry to hear what you are going through. My husband died of cancer 12 years ago from metastatic kidney cancer. I admire your courage and pluck. Dan, my husband, used to always say that he will go from treatment to treatment as he was waiting for the “silver bullet” that was the cure..It makes me sad seeing you go this, but I also want you to have hope..Cancer advances are happening so quickly…Never give up hope…your positive outlook reminds me of my own husband. You are beautiful and strong, and never let a doctor look into a crystal ball and tell you your prognosis..That is one thing I learned..I believe in healing and miracles…and I hope you will have yours. I was just talking to Sandy tonight about you and we were remembering memories of when we were much younger..Stay strong! You can beat the cellular criminals..And I love your blog..it is healing..Stay strong my dear! Cancer sucks…but there is always hope…

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