What does myeloma mean to me?
The best way to answer this question is to tell my story. First, I will tell you who I am. My name is Marcia Holman. I am a single mom of five children, the youngest of whom is 7 years old. I am a registered nurse working in the emergency room, as well as in the labor and delivery department. In 2001, I was working 12-hour night shifts and was just coming off of working three shifts in a row. My 11-year-old daughter had a soccer tournament about an hour-and-a-half drive from us, so I invited my sister to go with my two daughters and me to the games. I was extremely tired and didn’t feel good, but just thought I was coming down with a cold. During the weekend things got worse. I had nausea, projectile vomiting, diarrhea, spontaneous nose bleeds, chest pain, pain down my left arm—all indications I was having cardiac symptoms.
As soon as we won the soccer tournament we headed home and straight to the ER where I worked. I have a huge history of heart problems on my father’s side, so I thought being the great diagnostician, like all nurses, that I had high blood pressure. I expected to get a slap on the hand, be given blood pressure medication, and be told to lay off salt. Wrong! Three months prior to this incident, I had also had a hysterectomy for bleeding they hadn’t been able to stop for a year, and I had pain in my tailbone area. The gynecologist had thought it was inflammation from the surgery. I had also lost 30 pounds over the last six months without trying, but who was complaining? Not me. Besides, I could blame the surgery.
The emergency doctor did labs, and they all were off the charts. He said if I had a checklist I would be checking every box for multiple myeloma (MM). My kidneys were shutting down. My white blood count was extremely low, as were my platelets, and I was anemic. He sent me to get a chest x-ray because I was coughing and holding my side. It showed not only pneumonia, but three broken ribs and a fractured right clavicle [collarbone], thanks to MM. Then I was sent for a bone marrow biopsy which showed 90 percent myeloma cells. By midnight on February 9, 2001, that was the last check in the MM box. I had Stage 3 multiple myeloma, pneumonia, three fractured ribs, a fractured right clavicle, and renal insufficiency [poor kidney function].
I was a sick girl. The next day I went for a PET scan and lit up the board with lesions all over. The biggest was on my tailbone. Later that day as the news was sinking in, I had a visit from the oncologist at the community hospital. She told me I had six months to live and to get my affairs in order. I had heard of multiple myeloma—it is a form of cancer. It is what African-American men in their 60s and 70s get. I am the furthest from that spectrum as you could get. I am 49 years old, female, and Caucasian. I didn’t really know much about myeloma. I was panicked. I had a lawyer come to my hospital room that day to sign my children over to my sister. The doctors I worked for told me if it was a loved one of theirs they would transfer them to City of Hope Cancer Hospital. It was the one best advice I received. I was transferred to City of Hope the next day.
When I got to City of Hope, the oncologist examined me and said, “I have examined you from head to toe, and nowhere did I find an expiration date.” He gave me HOPE! He told me about a clinical trial for the first multiple myeloma drug, Thalidomide. It was the drug that came out in the 1960s to treat excessive nausea in pregnant women, but had caused severe birth defects so was taken off the market. Whoever it was that said, “Hey, maybe this drug could work for MM,” I owe him my life.
My doctor told me if I enrolled in this trial and fought really hard he would fight right alongside me, and together we would see my kids grow up. I am a fighter, so I signed up. I swore on a stack of Bibles that I wouldn’t get pregnant (easy—I had a hysterectomy) and that I would not share my drugs (like anyone would want to). He treated me very aggressively with four chemo drugs, Adriamyacin, Cytoxan, Vincristine, and Methotrexate, along with steroids and Thalidomide up to the highest dosage. I went into the hospital for a week and got that poison. When I thought I was going to die they would send me home for three weeks to recuperate, still taking the steroids and Thalidomide. During this time the doctor had to maintain a fine balance between wiping my cell count out and keeping me on enough chemo to kill the myeloma cells. At times I had to postpone treatments, get transfusions to increase my red blood cell count, get platelets to increase my platelet count, or take Nuprigen to increase my white blood cell count.
This routine went on for 10 months until my bone marrow biopsy said my myeloma cell count went down low enough to perform a stem cell harvest. By the way, from one who has had multiple bone marrow biopsies, may I suggest having conscious sedation for this, the most barbaric procedure around. I had six bone marrow biopsies before I figured this out, and now wouldn’t have another one without conscious sedation—so much easier. About that time I had a right hip fracture and had replacement surgery. After I healed, it was time for a stem cell transplant (SCT).
To prepare for the SCT, I had daily injections of Nuprigen for a week to draw the stem cells out of the bone and into the blood. When I had my chemo, I had a port put in called a Hickman catheter. There are several different types of ports, either placed in your chest like mine, or in your arm. It is a device that has two ports in which you can give medications and fluids or from which you can draw blood. Very handy, so you don’t have to get poked a lot. You do need to learn how to clean and take care of it so no infections occur. Port placement is a surgical procedure which is done at this stage if not before.
The bone marrow harvest is done by electrophoresis, which is where they hook up an IV to one of the ports. Blood is drawn out, cells are gathered and cleaned, and the rest of the blood is given back to you by another port. They collect as many cells as they can, which can take from one to three or more days. It differs from patient to patient. Mine lasted a couple of days. When finished, the cells are put in an IV bag and frozen until ready to use.
On January 12, 2002, I was admitted and given a heavy chemo drug, Melaphyon, to completely wipe out all my cells. If you have any hair at this point it won’t last long. My advice is to get rid of it before going in. Now they tell you to chew ice during the chemo and through the infusion of the bone marrow to help prevent mouth sores. I wasn’t told that and was given a nasty mouth wash, but I was already nauseous. Eating ice works much better. Mouth sores are not fun, so chew, chew, chew. Your immune system is non existent, so strict sterile measures are very important.
Things are done a little differently now than 18 years ago. When I had my stem cell transplant, they kept you in isolation for six weeks or until blood counts are up enough to be discharged to home. Now some SCTs are done on an outpatient basis. When I had visitors, they had to gown up and wear gloves and masks. I had nausea and diarrhea. It is not the time to be a hero; ask for anti-diarrhea and anti-nausea pre-medication. When I went to the hospital I could only pack certain items that could be sterilized. I recommend bringing pictures, music, movies, and books. But if you are much like me, I slept a lot. You won’t feel much like eating, but it is important to build up your blood counts and strength. They give you an antibacterial diet which consists of canned fruits and vegetables—no fresh fruits and vegetables unless it has a hard outer skin that they can wash in a Clorox solution, such as a banana or a melon. They also cook your meat until it is extra well done.
I went home on this diet also and ate no fast foods or restaurant food until my count was sufficient enough that they weren’t afraid of an intestinal infection. I only lasted five weeks. The isolation and not being able to see my children got to me and one night I hallucinated, seeing rats running around my room and hearing babies sneeze. The next morning I told my doctor he needed to let me go home or I would sign myself out against medical advice. Sassy nurse! LOL. He let me go home. I had to go back for appointments the next few days, but to see and hold my babies was worth it. It took a while to get my strength back. When they say it takes a village to raise a child, it does—with God by my side every step of the way until day 100 when I was declared in remission.
It has now been 18 years since my diagnosis and 17 years in remission. I have celebrated and thanked God for each and every day. I have seen so many milestones along the way, such as my two girls and my three boys graduating from junior high and high school. I have seen them all go to college and get careers of their own. I have two with associate degrees, two with masters degrees, and one with a PhD. Two of my boys went into the military, and one daughter married a military man. Four are married, and I have 11 grandchildren with one more on the way.
I was on a maintenance dose of Thalidomide for nine years mainly because since it was the first myeloma drug, they didn’t know when to take me off. In 2010, when they finally took me off, I was scared. It was like they were taking away my safety net. But I did well. Since then, there are many new drugs and treatment options, one being Revlimid, which is a derivative of Thalidomide. There wasn’t much activity in the myeloma world until 2015, when 10 new drugs were approved by the FDA.
I was also on Aredia, a bone-strengthening medication. They took me off Aredia in 2015 because I had a fracture of my femur that made them suspect that I was on it too long. I have had many fractures during my myeloma journey--14 in fact--and I now take an oral bone strengthener. I still get checked every month with lab tests, and results never come back as normal. But I do fine at my “new normal.”
I have had other obstacles. In 2006 I had breast cancer in both breasts followed by a mastectomy. Nine years later, in 2015, the breast cancer came back on my chest wall. I had a lumpectomy, chemo, and radiation. They say it is not related to the myeloma. I have also had numerous basal and squamous skin cell cancers which they check for every six months. It has been a rough journey, but I am still here, and there have been advantages too. I have met some of the most wonderful people!
This article was written by MyMyelomaTeam member Marcia as part of the Member Spotlight series. Marcia is a former nurse who loves to spend time with her grandchildren.
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