It has been 730 days since I received the ultimate gift. The gift of life, from a complete stranger. April 11, 2017 was the day I received my Allogeneic Transplant. I had been battling Multiple Myeloma for over 7 years. My disease had become very aggressive and I had exhausted all available lines of treatment. A stem cell transplant from a healthy donor was my one option left. As a Mom of 4 children and a wife who had so much more to see and do, I was not about to give up. I had already defeated the odds. When I was diagnosed in 2010 the life expectancy was 1–3 years. After a Autologous Stem Cell Transplant, using my own stem cells, years of chemotherapy and radiation I had managed to defeat the gloomy statistics. But now we were faced with the brutal reality of this ugly disease. The cancer was becoming smarter and was becoming refractory to all lines of treatment. There was little hope, except for a donor transplant. A procedure that came with great risk.
Not willing to give in to this disease there was no question in my mind. If I was lucky enough to have a near perfect donor I would go forward with the transplant. I can recall the Transplant Doctor at our consultation explaining to my husband and I that it was my chance for a cure. We never bought into that claim. We knew that if I survived the transplant, Multiple Myeloma is a marathon. It would be a battle that would fight for a lifetime. My husband and I viewed the transplant as a lifesaving procedure to buy me more time. In the hopes that more treatments would become available.
Here I am today. Two years later alive and kicking. We have shared so many precious memories that we never thought possible. I saw my boys fall in love for the first time. Saw them dressed up in tuxedos and go to prom. Watched them receive their diplomas and their college acceptance letters. I helped move them into their first dorms and cried as we left them to start their new stage of independence. I have seen my girls grow into beautiful confident young women. I am in awe of them. They are competitive athletes in volleyball and lacrosse, honor students and work part-time. And now they are in the driver seat learning to drive. All of this, while watching their Mom being sick for almost 9 years.
I was there to comfort my dog Flower who had been with me all throughout my illness, as she suffered from Lymphoma and held her in my arms as she took her last breath. I was here to convince my husband to adopt our rescue dogs, sweet Daisy and Sandy, who have become my constant companions. I have been blessed to spend everyday of the last 2 years with my husband by my side. He is the only man I have ever loved and in the 26 years we have been together, I have not only loved him, but I have liked him. He is my best friend, my biggest fan and the ultimate caregiver. He never has made me feel like a burden and even on my worst of days, still manages to make me feel beautiful. I am a very lucky woman and I don’t think I would be here today, if it wasn’t for his constant love and support. He has been the one constant in our family, holding it together. My kids and I have been able to depend on him everyday and he has always made us his number one priority. I don’t know how he holds it together and has a successful career and finds time to volunteer in the community, but he does. He is truly remarkable.
Although the last 2 years have been filled with blessings, I would be lying if I didn’t say they have also been some of the darkest, loneliest and scariest days of my life. I feel like I have aged 30 years. Although, I got through the critical first 100 days post transplant, my journey to recovery and health has been a very bumpy road. The recovery from a donor transplant is a much slower and more challenging process. I was put on immunosuppressants to help my new immune system to strengthen and to prevent my own body from rejecting it. Weaning off the immunosuppressants is a very slow process. So with that comes challenges. I spent most of my days over several months at home, to avoid germs that could be life threatening. Once again, I was isolated. Not able to attend my kids’ sporting events. Not able to be out socializing and living a “normal life”. I did however, slowly regain my physical strength by walking. Rain, sleet, or snow I was out there with my pups. I had worked myself up to about 4 miles a day. Walking became my therapy. I walked with close friends and their dogs. When I walked, I felt strong and healthy. Almost normal. I then started to dig into my passion of painting. I painted everything I could get my hands on. My husband rented me staging and I painted my foyer, my kitchen, dining room, living room, doors, furniture. You name it. It was my new purpose. I would wake up with a new project in mind and get my painting supplies and get painting. My home became my canvas. I was slowly creating my new nest of healing. Although my cancer numbers were still present, in fact growing, it was my escape. It was one of the few things I could control, painting and walking. No matter what, I woke up everyday and that is what I did. I had some control in my chaotic existence.
Last October, my walking and painting became more and more difficult. I had started to feel a lot of rib and back pain. The pain become so bad some days. A fractured vertebra was the cause. We had also watched my Myeloma numbers climb. My doctors were closely monitoring it. However they were hopeful that as I came off immunosuppressants, I would start to experience Graft versus Host Disease. (GVHD). GVHD is a condition in which the donated stem cells view the recipient’s body as foreign and donated cells start to attack the body. It can be anything from a mild rash, dry eyes, gut issues, muscle weakness or organ failure. There is a theory that a “little” GVHD can actually be good. In fact, it can actually help the new immune system see the cancer as foreign and help to kill the cancer.
At the end of November my health took a devastating turn. Once again it became necessary to start treatment. Fortunately, a new drug combination of Dexamethasone, Pomalyst, and Empliciti was approved in November of 2018. I had my first dose of Empliciti, and then received a necessary blood transfusion days later. We hosted Thanksgiving at our house with our family. It was a beautiful day. However, in order to get through the day I had to resort to taking Oxycodone for the pain. I can recall collapsing into bed from exhaustion that night. And the next thing I remember, I woke up in the hospital. During the night I had my first seizure. I had lost consciousness and an ambulance came to our home. Once I was in the emergency room I then had my second seizure. The next week or so was a complete blur. Moments flash in my memory. CT Scans, MRI, EEG and blood tests. The look of fear in my husband and family’s eyes. A mass had been discovered on my left frontal lobe. It appeared to be a meningioma. However, this could not be confirmed without a biopsy. I can remember the ride in the ambulance as they transported me from our hospital in NH to Brigham and Women’s in Boston. There we met a whole team of neurologists and infectious disease doctors. Not only did I have this mass on my brain, but I also had a fever. And they needed to find the source of the fever.
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Our world was turned upside down. Had the Myeloma spread to my brain? I guess I am lucky that I don’t remember most of the conversations with the doctors. My poor husband listened to the doctors and feared the worst. I remember being prepped for brain surgery. I have never been so scared in my life. I was convinced I was either not going to make it out of surgery alive or that I would be unable to communicate after surgery. I felt desperate to let my kids know just how much I loved them and was proud of them. Before they rolled me into surgery I got the strength and courage to send them a video. My husband and I had our tearful goodbye and the next thing I remember I woke up in the ICU.
The surgeon successfully removed the mass. We still did not know what it was, but it was out and I was alive and I could talk. After a couple days I was released from the hospital and sent home almost 15 pounds lighter, unstable and confused. My body hurt all over. My husband literally had to carry me into bed and dress me. I had little muscle or stability. I spent the first few days either in the bed or on the couch sleeping. During this time I developed a bad cough. Every time I coughed I felt like my ribs were going to break, it was so painful. I also had a fever. Once again I found myself heading to the hospital. It was confirmed, pneumonia. My body was becoming weaker by the day. And if that wasn’t enough, a rash had developed. Slowly the rash took over my body. It became painful and my skin became thickened and raw. GVHD had unleashed its ugly self. The pain was unbearable. My husband would try to comfort me with a topical steroid cream. I was put on high doses of Prednisone to try to calm the rash down. My body was failing me. I didn’t even recognize the frail spotted image in the mirror. My husband was living with the constant fear that I would fall or have another seizure and insisted on having someone with me at all times. My eyes became extremely dry and my vision was severely blurred. Christmas was approaching and I was just praying I would make it. We were literally living moment to moment. We had always been so strong in front of the kids. Most days I sat in my chair with tears rolling down my cheek. Everyday around 4pm my husband and I would end up crying. Not sure why that became the witching hour, but it did. We felt defeated, scared and helpless.
With the grace of God, my family and our incredible support system, I made it through the holidays. It still seems surreal all that transpired between Thanksgiving and Christmas. When I look at family photos taken on those 2 days it looks like a decade passed. I don’t even recognize myself in the Christmas photo. My husband and my kids’ eyes have a look of pain and sadness. We had been beaten down and gone through hell. But we made it and we were together. We were blessed with another Christmas together and hope for the new year ahead.
So I guess that leads me to where I am now. I am now almost 5 months out of brain surgery. A team of neurologists studied my case and it still has come back inconclusive. The mass appears to have been a clump of cells, not cancerous. In fact they could have been there for years. But the inflammation caused by the GVHD may have been the perfect storm, which set off the seizures. I have had 2 follow up MRI’s which show there have been no changes since surgery. I have been on Keppra, seizure medication since surgery. I had a 48 hour EEG a couple of weeks ago which showed that I do continue to have mini seizures throughout the day and a lot of activity was picked up during my sleeping hours. Although these mini seizures have not been debilitating they do cause temporary stiffness in my hands and disrupt my sleeping pattern. And they do have the potential to become full blown seizures. So my Neurologist this week increased my daily Keppra dosage to see if we can quiet the seizures down. Living in NH, I am unable to drive until after 12 months of being put on seizure medication. So, much of my independence has been lost. For months my husband and I have been living with fear that I will have another full blown seizure. But as time passes and we now have confirmation that my little seizures have become part of my daily life, our confidence is beginning to build. In fact, this past week I have started to take my daily walks alone with my dogs. Staying in the neighborhood where my husband is just moments away, but it gives me a little sense of independence and freedom.
My rash has resolved itself. I am now left with pigmentation change, or spots that cover my neck, arms, and back. These spots could take up to a year to clear up. With the warmer weather I am dreading exposing my ugly skin to the public. In fact I will most likely be wearing pants and long sleeves, as the sun can be very dangerous to GVH of the skin. I have been working out with a trainer which has been such a huge part in my recovery. It is such an incredible feeling to be able to move my body once again. It is a slow process, but I am making progress. I can now lace up my own shoes, do squats, planks and various other strengthening exercises. I am getting close to walking 10,000 steps a day. My husband set me up with a TRX system right here at home so that I can work on strengthening my body everyday. My short term memory is improving slowly. Some days are better than others. And my husband and kids know, if its not written down, forget about it. My eyesight is getting better. I still suffer from inflammation and severe dry eyes. I have had collagen plugs put in and I take daily eye drops. I have my port accessed 5 out of the 7 days a week. I am doing hydration at home twice a week, which has helped my energy level. My husband has become quite good at holding a conference call while hooking me up to my IV fluids. He has always been a Rockstar at multitasking! I am continuing my chemo regimen. I take a steroid and chemo pill 3 weeks of every month and receive an infusion once a month. Initially I saw a drop in my Myeloma numbers on this new regimen. The last few months we have seen that number start to increase. So as the GVHD is now somewhat in control, my Myeloma is now slowly unleashing itself yet again.
So what now? Like I said earlier, I am alive and its been 2 years. I now am facing 3 health challenges: Multiple Myeloma (incurable blood cancer), GVHD (which can also be life threatening), and now Seizures. Most days I wake up, thank God for another day and try to make the best of that day. Like my health, my anxiety and depression have been up and down. I have tried some alternative treatments that have helped including CBD and THC drops. I have seen a Cognitive Behavioral Therapist to help me with learning to live in the present and teach me to change my thought process to help deal with living with such uncertainty. But there is no manual for this. Some days just truly suck. It just becomes overwhelming. I can’t help but be sad and grieve the loss that we have experienced through all this. How life has changed. I become resentful. Why me? Why us? Haven’t we been through enough shit? When I go out in public I can’t help but look around sometimes and feel envious of people who appear to be carefree just going about their day. Just for one day I would like to not think about my health or be reminded of it every time I look in the mirror. Or when I go on social media and I see posts of friends going on vacations or out having fun. Why can’t we do that? When people who have been in our lives for many years have not reached out or do not want to talk about my illness, it hurts. And then when I stop and realize the negative thoughts that are going on in my mind, I beat myself up. Everyone has “stuff” going on. Hell, the day before I was diagnosed almost 9 years ago, I am sure the dirty laundry left on the floor or the guy cutting me off in traffic was my stress. Everyone has crap. Whether it’s a bad hair day, a troubled teenager at home, a fight with a spouse, a job they hate, a sick parent, depression or an addiction that they can’t seem to quit. For them, that stress is real and it is the worse. I am working on acknowledging that and not being judgmental.
Today I am just doing the best I can. My main priority is my family. And then it’s bringing as much joy to my life and my home and releasing anything and anyone who is negative. It has really been life changing. Finally allowing myself to be honest with myself and others. We have enough challenges we are faced with on a daily basis. I cannot allow myself to be brought down by negativity. I have been going back to doing what I love. Painting and creating my healthy nest. My home has become my sanctuary. It is where I feel safe and protected. Once again, painting and being creative has given me an outlet and an escape from my health challenges. I am looking forward to warmer days and working in my garden and expanding my nest to the outdoors. My husband and I have slowly learned to live moment to moment to day by day. We are beginning to make short term plans. The worst that happens is we have to cancel them. We have done it before, many times, and we have survived. In fact, my kids have become very resilient to change. Soon my girls will have their license and will be my Uber and my boys will be home from college. The fun and chaos of having 4 driving teenagers with only 2 cars I am sure will add to the entertainment.
I know I am one of the very lucky ones. I have lost good friends to this cancer. Everyday I wake up to news of another patient I follow on my Facebook support groups who have lost their battle. I do not take one single day for granted. Some days I find it hard just to get out of my own way and I have my pity party. And then my husband reminds me that today may be the very best day. So I allow myself to be sad, angry and resentful. And then I decide that today is going to be a good day. One day at a time. It is all we have. So, today we celebrate- 730 days alive!
