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.)
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.
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.
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.
Well, I've had 2 weeks off of chemo and managed to regain a good deal of my strength back as well as fingernails. I've had 2 treatments since with no further complications. My heart rate has had a couple of irregular days. But we're watching them closely. The one thing I am finding difficult this time around is keeping emotions in check. For the first time since I was diagnosed in 2014 I finally have had a breakdown. I find myself getting very upset and even crying. I guess that is exceptable. I mean people have expected me to have done this back when I first learned I had cancer. Funny it should come so many years later. I guess it took myself being very physically run down to tap into the emotions. As time continues on this journey, it is harder to keep positive without some help. My husband helps me tremendously as do my parents. My mother takes me to my infusions every week and keeps me company for 3 hours. Our chats help keep my positive. Distractions also keep my mind from getting depressed. Getting out to work on craft projects for charity events or having an art student drop by for classes gives my brain something to focus on other than my pain. My newest distraction will be trying to regain some strength and endourance in my walking. I will be doing the Rays of Hope Walk this October 27. It is a 5 mile walk. Right now I struggle to go 1 mile. Good thing they have a 2 mile short cut on the walk. I am shooting to be able to do the 2 mile walk but would love to be able to make it the entire 5 miles. It would be a great boost of positivity considering just this past winter I was bed bound and in a wheel chair. If you would like to encourage me on my goal, please donate to the Rays of Hope on my donation site. A bigger boost still would be to have you walk with me on the 27th! Hope to see you there!
When I last met with my oncologist, my fingernails were starting to be quite sore. Not the fingertips mind you. If the tips were hurting or losing feeling all together, then chemo induced neuropothy would be setting in. I'm all right there so far. In 2015 I did have 2 of my toe pads go numb. This pain in my nails is nothing like that. My nails have become brittle and painful. Using them is difficult. If you ever broke a nail down below the tip, then you know the pain I refer to. I have a bruising developing under the plate. Touching anything with the fingertips is painful. Since I was able to skip chemotherapy this week, the nails are feeling better. But the worse of them, (the middle fingers) are still pretty bad. I get next week's infusion off as well. So maybe all of my nails will feel better before I return from my 'vacation' and start up on the Taxol again. Until then, I just have to be gentile using my nails so as not to bruise them further.
KEEP HYDRATED!!!! We are all about drinking water in our house. So it came as quite the surprise when I found myself in an ambulance heading to the Emergency Room for dehydration. I guess there was a perfect storm of mini events that went unnoticed but eventually compounded into something big. It's Summer hot and humid. Don't want to eat much - and therefore not taking in fluids at a meal. Humidity makes you not realise how much you sweat out fluids. I'm drinking to ease my belly after chemo. But the drugs make me tired. Can't drink when you are sleeping all the time. Day after day of missing little water sipped here and there adds up. Sunday, my heart started to race randomly with the Innoppropriate Synus Tachycardia I have. I could not get it under control. So by Monday morning, I felt cold and clammy and weak. I almost passed out. I went into the Cancer Center for hydration and a check up. But since we could not get my heart down out of 160s -170s, they had to send me to the ER. I was there for about 12 hours trying to find out what was wrong and why the usual tricks were not working. After almost 4 bags of liquids over this period, my heart finally regulated its beats. I passed my tests and was allowed to go home. It was a scary time. I was shocked to be so dehydrated. But the good of it all is that I now know to keep track of the little things and don't let problems compound. Water is really a miracle drug. Keep drinking it, my friends!!!
Quite a bit has been happening lately. My hair did fall out again from the Taxol. But at least the low dose is easier to handle this time around. I am sluggish and find it hard to eat, but this time last time my mouth was full of sores and systs lined my eyes. I'm happy with where I am. Expecially since the Taxol is working at stopping the progressing of the cancer. Every time I had a scan done of my bones, the disease appeared in new locations. Not only did it spread over my entire hip area, but it moved into the ribs, collar bones, shoulders, neck, and even on my skull. I have to admit, I was starting to get scared at how rapidly the cancer was spreading. But after doing a couple weeks of Taxol, we went in for a new scan. This time, the disease did not show any new progression. I actually teared up at the news and partied with a hot fudge sunday.
The reason the cancer was spreading so much in the past scans was because it had mutated to where it resists treatment and enhances spread of disease. This mutation is known as PIK3CA. We found out about the mutation when we had the bio-marker testing done on my biopsy samples. The Ibrance / Letrozole does not work on cancer with this mutation so we will not be going back on that after chemo is done. Fortunately, there is a medication that will attack this specific mutation. The government approved it only this past May! Talk about little well timed miracles! We will begin this medication (2 pills) after chemo finishes in September.
My husband and I met with specialists on this PIK3CA mutation at the Dana Farber Cancer Institute in Boston. We learned about the mutation and treatments available. The specialists confirmed that the path my oncologist has me on is the right one. They also will be keeping my oncologist updated with any new information discovered on the mutation and its treatments.
So, knowing the current scans show no new progression of disease and that there is a drug made to fight my specific mutation, I am feeling stronger about moving forward. We can not cure the cancer. It will be a fight for the rest of my life. But if we can keep ahead of this spread with the new medications, that life will be longer than I hoped for.
Fireworks are flying this Forth of July. Scans have shown that my cancer is still spreading. The Ibrance has not been able to get ahead of the disease. So, I'm back on chemotherapy drips. Once a week I head in for an infusion of Taxol. I had this at the start back in 2014-15. But this is a much lower dose. We're hoping this will help us get ahead of the cancer. If we can stop it well enough to slow progression down where we can move faster killing the cancer than the cancer killing bone, then we'll go back on to the Ibrance. We have submitted my biopsy samples to a lab that will analize my specific cancer. A coctail of mediction will be created specificlly based on my disease. This will help us dramaticlly with our battle. Once we have this cocktail, we'll stop the chemo and do the specific meds. For now, we have stopped the Ibrance and Letrozole while we do the Taxol. It's day 14 of Taxol today and my hair has not yet fallen out as per normal dose. The low dose I'm on may not drop my hair. The Ibrance was making me shed quite a bit. That has stopped with the medication. So my head is happy. We'll take more scans in a couple of months to see if we're stopping the spread or not. I'll have to try to stay awake during the week while on chemo. When we switch to the personalised cocktail, I'll check back in here.
So, let’s sum up how I got to where I am now:
After 2 weeks of radiation on my right hip and a new medication, I do notice a difference in health. Most of my pain has lessened and even been eliminated. The only pain I have left is in one particular area of my right hip. The spot that has been the greatest pain right from the start is still bothering me just as much as it has from the beginning. My oncologist believes that this spot is something other than the MBC. If it was part of the cancer lesions, the pain would have gone down with the rest of the troubles. We are starting new tests to see what can be the problem. I am looking forward to finding out what this problem is so we can treat it properly and, in turn, eliminate the pain as we did with the others. Fingers are crossed that whatever the problem is, it can be easily fixed. I would love to be able to be mobile again. My niece has asked me to go see her new college in April. I am shooting to be able to walk by then. I am determined to be able to enjoy this experience with my niece. (FYI: During January and February I lost my ability to walk and could not get myself out of bed. With therapy, I am able to get into a stroller (walker with a seat) or a travel wheel chair (for distances).
I had a follow up with my Oncologist and wanted to pass along what we learned.
First off: I had a full body CT scan to see if the BC had metastasized anywhere else. Good news! No new bits were found! Yay!
The new pain medicine we switched to is working. I still have tremendous pain and can not put weight on my right hip. But the new medicine combined with a steroid is helping me to control it. Hopefully, after 2 weeks of radiation, the rest of the pain will go away so we can gradually ease off these pills. It will probably take longer than the 2 weeks for that to settle in completely.
So as far as what is actually wrong (aka what is Breast Cancer that has metastasized in the bone):
Originally, I thought it was like what we had in the breast ; a tumor that gets shrunk until it is a size that can be removed. Not so. It is lesions - not tumors - that are basically cancer bits that are eating away at the bone making tiny holes. The radiation isn’t for shrinking - it’s for killing. It will kill the cancer which in turn will take away the pain the buggers are causing.
Some pain could also be from thin cracks starting in the bone where those lesions weakened the structure. When radiation is done, I will recuperate for a bit then begin a treatment for healing and strengthening the bone. That will be a drip I go in for once every 3 months until it looks like we can stop.
We are zapping only the right hip where there is the largest mass of lesions for fast relief. The tiny ones scattered on the central and left areas of the hip will be killed with the new cancer medicine I am now taking. (2 different pills - no going in for chemo drips this time. Radiation isn’t something one wants zapped when you can treat things with safer methods.)
After radiation is done, I will meet with a specialist who will start me on another new medicine that will keep future MBC from forming.
I will also be starting physical therapy in about 3 weeks to get this hip back into shape.
So it sounds like a lot, but I am feeling confident with this explanation. As long as I am careful with my hip bone health and don’t do any Irish step dancing or rock climbing, I should have no problem getting back to normal. So, ….Yay.
Well. Results are confirmed. I have Metastatic Breast Cancer located in my hip. I go in for a head-to-toe P.E.T. scan tonight to see if the MBC has spread anywhere else. We start radiation treatment on the largest area on the hip to shrink it down. Hopefully, shrinking will take away the pain and allow me to move again. My shoulders would greatly appreciate that! They hurt having to lift my big butt everywhere. LOL
Thanks to my husband who helps me in and out of bed and waits patiently as I try to use stairs. Having an ocupational therapist as a husband is very handy right now. :)
I received a Handicapped Parking Plackard and a ramp is being installed from the front door. I feel old. But not old enough, I guess. I am too young to qualify for many free services. We'll have to look into how to afford all the things I will eventually need as I lose more mobility.
When I visited my Oncologist after coming off the Anastrozole she looked at my hip pain and said that it was not from the medication but something else. After a Bone Density Scan and an MRI, we see it definitely is something else. We are waiting on results from a biopsy, but first impression looks like it is Metastatic Breast Cancer.
The pain in my hip has grown to a point where I can not put weight on the right hip. I am using a walker to move about. But it is with great pain and effort. I had a fall on Sunday that aggrivated my shoulder muscle. So now, I can not use that arm to take weight off that side of the hip when I move. I'm not sure the pain medication is working, but I don't want to stop it to see if I am right in case I am wrong. This week, I am waiting for the results of the biopsy we had on Monday by resting my arm and hip. Praying for the best results to come in.
Sue has joined the Scantic River Artisans. Come see art made by local artists of various mediums. Find out more about SRC at this link.
Sue is now a Certified Gemologist by the International Gem Society! Sue became a gemologist to help better identify gems in jewelry bought and sold by the company she and her husband run, CSM Collectables. Find it on Ebay.
CSM COLLECTIBLES NOW OPEN FOR BUSINESS!
My husband and I are looking for a new career to pay for the kids in college. Check it out.
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