Today I am forcing myself to sit and stay still for few moments. This sucks. I don’t want stop, think and feel. I have been on complete autopilot for a few weeks now. My mind racing in a million directions. Tearing apart my house. Organizing, de-cluttering, etc. Some may call it nesting. For me it is staying ridiculously busy, blocking out my fears. Running myself to the point of exhaustion, so that as soon as I hit the pillow I pass out. The next morning, the frenzy starts all over again.
As you may know, a few weeks ago a new tumor was discovered on my right side near my clavicle. This tumor felt different right from the moment I found it. There was no pain. Just a perfectly round ball. It didn’t make sense. I had just completed my 12th cycle of what some consider the new wonder drug in the Myeloma World, Daratumumab. Although my Myeloma numbers were holding steady (not going down but most importantly not going up), it looked like we had finally gained a little control over my relapse. I finally was getting out of my funk and began running again. In fact, I was training for a half marathon this fall. I finally signed up for my Real Estate License, a long time goal. After almost 8 months of continuous chemotherapy treatments, I was finally getting my life back a little.
Who am I kidding? Living with Multiple Myeloma for the past 6 years has been a continuous roller coaster ride. The disease when it is not causing physical pain, it has caused emotional hell. For a while life will be good. In fact, at times, great. And then boom, it hits you right in the gut. Living with a incurable cancer. How the hell is anyone supposed to do that and not worry? Everyday I am forced to think of this crappy cancer. Everyday for the last 6 years, I have taken chemo pills and evil steroids to keep me alive. And then once a month I get my blood drawn and wait the dreaded 4–5 days for the results. Some months, I feel completely hostage waiting. Wondering what my fate will be. Over a year ago, after a pretty quiet 4 years, my luck ran out. I received that dreaded call that my Myeloma was back.
I was assured by my doctors that once I got back on my prior treatment regimen, my numbers would go down again. After months of treatments, my Myeloma numbers continued to climb. I switched to another line of treatment, no luck. Added in a third drug to my regimen, Myeloma continued to prosper. I felt defeated. My body was giving up on me. It was time to pull out the new wonder drug, Daratumamab. This meant hours in the chemo spa every week. But I was told this will do it. My body seem to tolerate it fine. No evil side effects other than fatigue. My time in the infusion room, gave me time to sit with friends and family who accompanied me and spent hours talking. It actually was quite relaxing. Along with my mother in law Trish and my new friend Steven (a Reiki volunteer at the hospital), I received hours of Reiki and talked about the power of positive thinking in healing. I even took this to a further commitment. Every Wednesday night Steven and his friend Eric, came over to my house to do Reiki and Vortex Healing work with me. Week by week my energy improved and I discovered a great sense of calmness. I was enjoying the new improved me. Discovering more about my inner strengths, paying attention to my intuition and experiencing beautiful moments. I was finally able to calm the mental chaos and fall asleep at night without my nightly dose of Ativan. I felt like I was on the path to healing both physically and emotionally.
This week I will complete my Radiation treatment. Every day for 2 weeks I head to radiation. I lay completely still on the table, close my eyes and picture a good ‘ ole game of Asteroids. A purple laser light blowing up my Myeloma Cells. My tumor is shrinking. If only my treatment was this simple.
Last Thursday Mike and I headed down to Dana Farber. After a long 2 week wait it was time to hopefully get a plan. You see, a few weeks ago, we learned that my tumor was a soft tissue plasmacytoma. Remember I said it felt different, well it is. In fact, its very different than what I had 6 years ago on my Sternum. My Myeloma I guess decided it was time to up the ante. Myeloma is smart. Always trying to survive. Over time the disease changes. It becomes resistant to chemotherapy treatments. And sometimes it moves into soft tissue and becomes sneaky, undetected and aggressive. And as luck has it that is what has happened to me. My disease has morphed into Exramedullary Disease. It is defined as an uncommon manifestation in Multiple Myeloma in which myeloma cells form tumors outside of a patient’s bone marrow, in the soft tissue and organs of the body. It is more aggressive and more difficult to treat. Lucky me. I’m so angry, so scared, so sick to my stomach.
After a very long day and a long 2 week wait we now have a plan. It may not be the plan we want, but here it is:
I’ll be finishing up radiation treatment this week. On November 3rd we will head down to Dana Farber to get a new baseline of my M-Spike (Myeloma Protein). Then I’ll begin new chemotherapy treatments consisting of Krypolis, Cytoxin and Dexamethasone. I’ll receive an infusion twice a week for 3 to 4 cycles. Hopefully this will knock down my Myeloma . If so,we will move forward to a Transplant.
6 years ago, I received an Autologous Stem Cell Transplant. My own Stem Cells were harvested and frozen. I then received a highly toxic Chemotherapy treatment to obliterate all Myeloma cells and the blood producing cells that are left in the bone marrow. My harvested Stem Cells were then infused in me, literally saving my life. Over several days the transplanted stem cells traveled to the bone marrow, where they grew and developed into new mature blood cells, including red blood cells, white blood cells and platelets. I was confined to my “fishbowl” at the hospital in total isolation for 3 weeks and then was allowed to go home to recover as my immune system slowly developed. During this time, I had to limit my exposure to germs and the outside world (wearing a mask and glove at all times. It was not a fun time. We got through it and came out the other side stronger and healthier and here I am 6 years later.
We have known that someday we might be faced with having to repeat this process. I have frozen stem cells in the bank. We found out on Friday, that this is not the best option for me. With Extramedullary Myeloma I would be lucky if I got 1–2 years of remission with an Autologous Stem Cell Transplant. And then my Myeloma would be even more aggressive and resistant to therapies. This means that my only chance for fighting this and winning is an Allogeneic Stem Cell Transplant. Stem Cells are collected from a matching donor and transplanted into a patient to suppress the disease and restore the patient’s immune system. The patient literally will receive the immune system of a matching donor. A healthy human’s immune system has the ability to come in contact with cancer cells and kill them. So, after vigorous chemotherapy , if any Myeloma cells are remaining, in theory, my body could learn to fight off the Myeloma without chemotherapy. This could be my CURE!
This all sounds amazing, right? Well of course there is a whole lot of risk involved. The immune system and the blood system are closely linked and cannot be separated from each other. Because of this, not only will the donor’s blood system be transferred, but also his or her immune system. So possible risks include immune rejection of the donated stem cells by the recipient(host versus graft effect) and or immune reaction by the donor cells against the recipient’s tissues (graft versus host disease-GVHD).
This is all pretty scary stuff. In fact, its impossible to wrap our heads around it. Luckily we have an incredible team at Dana Farber who are all working together with one goal in mind, getting us through this and giving me years with my family. So for the next 3 weeks we are doing our best trying to hold it together, accept this path we are on, and try not to get too ahead of ourselves worrying. Its near impossible. Just taking it one minute at a time. Today was a beautiful fall day in New England. Mike is out “therapy” running right now and this morning I met Suzi for an early chilly walk with the pups. Trying to carve out moments we can breathe and enjoy.
November our new journey begins.