MBC stands for Metastatic Breast Cancer which is breast cancer that has traveled to other parts of the body. The breast cancer that we thought was conquored in 2015 has returned. This time on the surfaces of my bones. The following is a journal of what I am going through on this second part of my cancer journey. My original journey can still be read here in my Cancer Diary.

(The earlier entries are found on the bottom of this page. Current entries are at the top.)

9/1/21

    To all those who read this final entry it is the hardest thing that I have ever had to write. My name is JR I am Sue’s Husband. I regret to say that Sue lost her valiant battle against Metastatic Breast Cancer on September 1st 2020 in the comfort of her home surrounded by loving family and friends from afar. I washed her face combed her hair gave her a gentle kiss and told her “It is ok honey I will be fine, everyone will watch out for me. You go and rest be without pain.” At that my lovely Sue, The love of my life passed away. It was the hardest thing that I ever had to do next to writing this entry. It was about her not having to suffer anymore. She was so good up to the very end. She was alert and talkative. She was able to communicate through zoom with friends in California. Sue wanted to see anyone who wanted to see her and we did that. Even with Covid raging our country if someone came to visit she wanted to see their smiles and feel their love. To share in the joy of their visits. At times she was tired and closed her eyes and people would say “Oh she is sleeping I will let her rest and she would say I am just resting my eyes don’t go yet.” She was always wanting to please others right to the very end. 

     As I wanted to do this final entry for her as she wanted to try to inform others who were going through the same as she did not to give up and keep trying. Don’t just lay down and let this disease control your life. Be positive and positive things will happen. In March of 2020 due to the increased pain she was having in her hips she decided she wanted to undergo a Bilateral hip pinning. Which basically meant having metal rods inserted into her Femurs to stabilize them and reduce her pain which she was having with all of her mobility. She was in the hospital for two days and I took her home. She was able to walk with the use os a walker and was able to do stairs before she come home. The surgery eliminated her pain and she was able to walk in the house up and down stairs and ventured back outside. She did tend to overdo it some times as she wanted to be out in the gardens with her flowers and plants. The doctors were amazed at how well she did and stated this is how the surgeries are supposed to change life for the better. 

    Sue had two episodes of Hypercalcemia. This was caused by a build up of calcium in her blood from the breakdown of her bones from the cancer and also her taking a calcium supplement to increase her bone strength. She became very confused and unsteady and had one fall without injury. “Tigger's always bounce.” She was given injections that would take the calcium from her blood and push it back into her bones. Two trips to the hospital for that and one for an extended stay for a week as her Inappropriate Sinus Tachycardia was not under control also from the hypercalcemia. She required a short stay in rehab to increase her strength. She was unable to return home right away due to Covid and their restrictions at the facility.

    In August she continued her treatments with infusions and oral medications. Still trying to find the right cocktail that would stop the progression. We had had discussions with our Oncologist in the past to let us know when it would be time for Hospice. I as an Occupational Therapist I always pressed the questions and ratted Sue out when she was asked questions. The doctor called me her manager, as that is what a care giver is and it is our responsibility to get the best care for the ones we love. On our last visit to the doctors in late September, I was not able to go in due to strict covid precautions. Only able to be present on the phone we received the news we hoped would not come. That was likely one of the hardens visits we had and to not be able to be there to hold her hand was terrible. Sue and I always held hands and it drove our family and friends nuts. They kept saying the honeymoon is over move on, but not for us. Every day was like we had just gotten married and to hold her was a true gift.

    The doctor stated that it was time for Hospice. We agreed and within 24 hours we had all that we needed to take care of Sue at home. She continued to Zoom chat with close friends in California as we scheduled calls around her meds and nap times which she loved. Family and friends came to visit her which I encouraged. I hated to have to tell family and friends from out west not to fly and come to visit as it was not safe. We made the best of it and it seemed to work out. She received gift packages from her friends that she worked with at the Disney Studios. We received wonderful letters fro her Director friends. There is one letter that I received that I want to add in here. It is from our friend Brenda Chapmin writer and director. MAYA is a cat that we found three years ago on mothers layout in the pouring rain outside our kitchen. Sue was in the basement and heard the little kitten crying and we could not find the little kitten as she was black and was covered in mulch and soaking wet. Our daughter Stephanie who is in Vet school helped us to nurse her back to health. She had a near dysplasia and would wobble when she walked. Not willing to accept that this little kitten with it’s eyes still closed and unable to see and may not survive I set to work. Gave her therapy fed her with a bottle and Sue would carry her around in her pocket. Sue never had pets as she was allergic to them. However be it from her medications or sure will sue never had a reaction. They grew very close and she would snuggle with sue all the time never paying any attention to me unless she wanted to practice attacking something. Maya was the best therapist Sue could ever have for those three years. When I was away at work they were always together. She knew when Sue needed loving to have her lymph nodes messaged and just cuddle with her. That was her momma.

MAYA’S EYES

10/27/2020

The cat’s eyes followed me. It was unnerving. “If you make a wrong move, I’m going to jump on your face and take you down,” she seemed to be thinking.

“It’s okay. I come in peace,” I said as I walked across the darkened room to the chair set up near the bed and sat down next to Sue. Maya sat dangerously still except for a threatening twitch of her tail, watching every minute movement I made. She slowly seemed to decide that I was okay and blinked into a contented squint. Sue flinched slightly then smiled weakly as Maya settled into her side, kneading down and purring.

I relaxed. I like cats, but you never know if you’re going to get love, hate or simple disdain. The latter two often come with a nasty scratch.

The room was warm and dark, a soft glow of light through the curtains all that illuminated. JR had made it as cozy as possible for Sue to feel safe and comfortable in her favorite part of the house. He had quietly stood in the doorway as I crossed Maya’s gauntlet, but had stepped softly away to give me some time alone with my best friend.

Sue struggled to open her eyes. She won the battle for a few seconds, her beautiful round brown eyes wide as she did her utmost to focus on my face. Then I saw the flicker of recognition, her eyes acknowledging my presence. I could just see the smile behind them. She was happy I had come. My heart lurched in my chest, and I had to gulp in air. She was emaciated. I hesitated, but I reached out and I took her bony hand in mine. It was neither cold nor warm, just soft and delicate, as if I could break it too easily. It felt so fragile, this hand that used to be so strong and firm and elegant, the fingers long and articulate. This hand that was the instrument of Sue’s abundant talent as it wielded a pencil or pen or brush or stylist… or even a glue gun. Now it lay listless in mine, my stubby fingers wrapped gently and desperately around hers… yet I felt a gentle little squeeze. My heart stopped for a moment in gratitude.

I struggled to keep the tears out of my eyes and forced my lips into an unquavering smile. No quavering allowed. Sue had carried such bravery, joy and love into her battle against this dark cancerous monster, willing it away with her bright eyes and giant smile. “When life gives you lemons, you make lemonade,” was her battle cry. No wiggly chin or trembling lips would I let her see on me. I wasn’t sure how long I could hold it, but she spared me by closing her eyes, again.

To see Sue like this was killing me. To even know that her cat would be sad and confused when she was gone nearly sent me over the edge. As it was, I envied Maya her ability to cuddle into Sue’s side, pushing her head comfortingly and affectionately into her “mother’s” armpit. I desperately wanted to do the same, silly as the thought was of sticking my big head into my friend’s armpit. Just the same, I wanted to be as close to Sue as Maya was.

I was so in awe of this cat that had won over Sue’s heart. Sue, who didn’t really like animals, at least when we were younger and back in California. She was allergic to dogs and cats, both of which I had in my house… two of each, actually. In my defense, I didn’t know she was allergic until after I’d brought them home. Sue would diligently avoid petting them when she would come over, which was several times a week, back in the day. That also meant that our puppy, Matilda, would dutifully pee on the floor when Sue walked it, so desperate was she for Sue to pet her. Sue would give Matilda that big smile of hers and say, “Oops!” and giggle as Kevin or I ran to grab the paper-towels. But she never really gave our pets any real attention or overt affection. When Maya showed up in Sue’s life, wet and mewling out of the rain, I was stunned to hear how Sue cooed and talked to her, and how much love was in her voice when she spoke about her. Maya brought Sue a joy and companionship I never thought she’d experience in loving an animal. I was happy for Sue, and loved Maya for it.

But at this very moment, all I could do was envy that cat.

I watched as Sue’s breathing went from labored to a little less so as Maya purred and rubbed her head against her. “You’re going to be lost without her, little one,” I thought.

Looking at my friend’s sunken face, I wanted to gather her in my arms and hold her and make it all go away. I would have traded places with her without hesitating if I could have. I wanted to let her know that I loved her so much… somehow. So, I held her hand and bent and touched my lips to her cheek. The corner of her mouth twitched into a fleeting smile…

All a wish. A daydream.

I couldn’t hold Sue’s hand in mine or kiss her cheek because our world is upside down in a goddamn pandemic with no foreseeable end. I could only watch on a screen from three thousand miles away as my best friend opened her eyes and struggled to focus on the screen… on me. The helplessness and frustration of not being physically there for her was agonizing. I thought I saw a slight brightness in her eyes, the corner of her mouth twitch as she looked my way. I hoped she could really see me. I hoped she could feel my love through that cold flat screen.

Maya was oblivious to my presence, as she persistently kneaded into Sue, purring. I could hear her purring. Oh, how I envied that cat, sticking its loving head into my friend’s armpit.

Brenda Chapmin 10-27-2020

      Maya was with Sue till the very end she loved her momma so very much. I feel a piece of Sue is inside of Maya. She now follows me everywhere and cuddles with me as she did with Sue. She still attacks me when I am not looking, just to keep me on my toes.

    The Loss of Sue was a great loss to this world. She fought every day to beat a relentless disease that shows no mercy on the Good Wonderfull loving people of the world. Why we can find treatments for a global pandemic and not for the cancers that plague the world is beyond me. For all those that are fighting the fight never give up be strong when it all seems at it’s worst, look into your children’s and spouse's eyes and draw from their strength and love, dig deep and fight. You are the strongest people in the world. You may loose your hair, a breast and even some friends but you are all strong beautiful people. Sue use to always say how can you love this deformed body and the answer was easy. I love the person inside the body. For better or worse in Sickness and in health. That is what love is. We never want to let it go, but if and when the time comes true love is being able to let the spirit fly and be free.

    Sue past from this earth on September 1st 2020 and was laid to rest in the Veterans cemetery in Agawam, Mass. surrounded by other worriers that fought for our country and our freedoms. She is also a worrier as you all are. Be strong and remember as Sue use to say.

“When life gives you lemons make lemon aid. Sometimes it just takes a bit more sugar. “

LOVE TO YOU ALL AND GOD BLESS BE STRONG.          

JR

1/16/20 

Boy am I behind in updates!!!

Let's see how far I get before I need to take a break...

I never did return to chemo infusions. They worked up to a point before stopping their efficiency. We waited for the insurence to approve usage of the new drug Piqray. When we finally got the go ahead, we started this new daily pill which is fashioned to fight the specific mutation my cancer has. It is coupled with a monthly injection (2 shots in my bumm).  

Well... I did not react well to the full dose of the Piqray. I ended up twice in the hospital! First with hypercalcemia and second with hyperglycemia. Thought I was going to die with the first stay! I was a mess both physically and mentally. I really did not think I would see the end of this. And when I found myself returning to the hospital, I felt like my journey was ending. Most of October and all of November was spent in a negative swirl of pain, nausea, hallucinations, and all kinds of side effects. Finding the correct drugs, physical therapy, and, well, positive energy seemed impossible. Somehow, we pulled through. I guess the best results came from stopping the Piqray all together and letting my body flush out. Stopping the drug stopped the continuation of new effects. But it took several weeks to flush it all out of my system and end the old effects. I never did return to 'normal'. But when we found we were 'managing' our pain and sickness, we tried the Piqray back up again. 

I admit that I did have a panic attack at the thought of returning to the medication that caused me so much misery. But it is the only thing out there specificly created for my mutation. I NEED this to work! So after my doctor spent weeks trying to convince my insurence that this was a nesseccary drug, we began again. This time my oncologist dropped the medicine down 2 dosages. It has been over one week now on this lower dose Piqray. We are armed with knowlege and tools to regulate the side effects this time. So far, everything has been moving along 'smoothly'. It's a battle every day! And I do mean a battle! I really do need to work hard both physically and mentally to keep moving forward. But as long as 'forward' is how we're going, then I'm good.