It was June 2008 and I never had felt better in my life. I had lost weight (intentionally), was eating 4-5 vegetables a day, trying to drink the 8 glasses of water and walking about 3 miles a week. After giving blood at the local blood drive at the end of June, I noticed that I was very tired and had been fighting nagging back pain for a couple of years.
My blood was checked and my calcium level in my blood was extremely high. I won’t forget Dr. Wolverton handing me a piece of paper that said, “St Mary’s ER” (Rochester, MN) on it. I’m so glad I had a great Dr. to catch this; many people fight this for years before finding out what is wrong. He didn’t want me driving over on my own, so my sister-in-law Janie drove me over to Rochester, since too much calcium was causing me not to think clearly, plus can affect other body functions. I was even calling well known relatives by the wrong names. By the time I got to St. Mary’s ER , they asked me what was wrong, I couldn’t remember the word “Calcium”, too much calcium in my blood was causing me to not think clearly.
After being admitted and tested, they came in to my room, 4 doctors, just like in the movies, 4 guys with suits on, all looking at the floor. I immediately knew this can’t be good. Only one speaks and steps forward, the rest stay by the door. “Mrs. Schultz, I’m sorry but you have Multiple Myeloma, an incurable cancer of the blood plasma cells.” I had been hospitalized for hyper calcium, back pain, fatigue and kidney failure. I didn’t cry, I just asked how long I had to live. He said” we don’t know, you could possibly live long enough to die from something else”. Well what does that mean, I thought to myself…
I was transferred to Rochester Methodist Hospital, where things could be better controlled. My calcium levels were coming down with treatment and I was feeling better, my kidney’s had thankfully started to work once again. Multiple Myeloma robs the bones of calcium, hence the back pain. I had numerous lesions throughout my bones in my body. Plus this cancer likes’ to come back, even after it’s under control, I didn’t know what plans there were to keep it under control.
I briefly went home for 5 days; I call it 5 days of torture and endless praying to God. I didn’t know how long I was going to live, 2 days, 2 weeks, and 6 months what? I looked on the internet, put in “multiple myeloma” it said this was a rare cancer only 1 % of all cancers, most commonly affects men, African American’s, aged 75, average life expectancy 3 years. What! I’m none of those things and 3 years!
After 5 days of blackness, feeling hopeless at home, I went back to Mayo Clinic, I met Dr. Rajkumar, Mayo Clinic Hematologist and Oncologist; unknowingly, God was answering my prayers. I was put on a new chemo drug, Revlimid that worked, here was “hope”. Plus I wasn’t going to lose my hair! Though there is no cure for Multiple Myeloma, the trick is to find the right chemo, at the right time, for the right person. A Stem Cell Transplant can sometimes reset the body and either no chemo or just maintenance chemo can be given after that and the person can stay in remission for 2-3 years. Gradually my blood counts responded and in Dec 2008 they wanted to harvest my stem cells, for later transplantation. I was taken off the chemo for this process.
Stem Cell Collection consists of your blood going through a machine that spins very fast(very simplified lay terms). Stem Cells are collected and frozen, and then your blood is returned to your body. They start this process, by giving you a shot in your stomach that promotes stem cell production in your bone marrow and releases them into your blood stream. Blood levels were checked until the numbers showed that by blood stream had lots of stem cells. Luckily I had good large veins, so I didn’t need a port (a temporary passageway into your bloodstream); it just meant 2 good pokes with BIG needles every day for about 3 days. They collected 7.26 million stem cells, enough for 2 transplants. I was lucky no side effects, except for some achiness and extreme tiredness.
During this time I stayed at the Gift of Life Transplant House in Rochester. Meeting others there doing the same thing or waiting for organ transplant, liver, heart & lung, heart, double lung transplants. It’s an awareness that’s unbelievable; there were many worse off than me. There was great comfort in that house and during my stays there, always a sadness to leave. To leave these people that had so comforted me, to see their pain, compassion and understanding in their eyes, is something I just can’t explain. Yet there is the prevailing feeling of HOPE that permeates that Transplant House anytime I have stayed there.
They put me back on a chemo drug called Revlimid, only to find out it didn’t work, plus because I have a chromosome deletion which makes my multiple myeloma more aggressive, I was getting worse in a hurry.
Meanwhile, a cluster of multiple myeloma cells (plasmacytoma) had formed within my vertebra, which was now causing my extreme back pain. I was told that radiation must be done; this cluster is pressing up against my spine and could cause paralyzing. I was assured of Mayo’s accuracy, which was some incredible number and had the radiation done. Then my vertebrae promptly collapsed, the only thing holding it together was the myeloma cells and they were now gone, the pain was incredible. They noted I had 5 compression fractures in my spine from the myeloma robbing the calcium from my bones. I then had 4 verteboplasties (cement put into the vertebrae to keep it stable). This helped decrease my pain a great deal.
I was put on a clinical trial drug for the month of April 2009; it was not working, as one Dr. put it, my disease was on the verge of exploding. They decided to throw the book at it, a treatment called VDT PACE, each letter stands for a chemo drug and this is done under hospitalization. My IV pole had a skull and cross bones on it, with a huge bright sign that said DO NOT TOUCH, call this number in case of a spill. People would walk way around me in the hall, ha! Shortly after, I started losing my hair, till finally one day I asked a nurse to just shave the rest of it off.
Then in May 2009, I couldn’t pull my left leg into the car and I had trouble walking. Yes, another cluster of myeloma cells was located in my pelvic area, pressing on a nerve. More radiation, followed by intense pain, but then within 3 days, could once again use my leg!
June 2009 was down with shingles, around the center up rib cage area of my body. Received treatment and was better.
July 2, 2009, Stem Cell Transplant time, I received my first half of my frozen stem cells and I had moved back into the Gift of Life Transplant House. After receiving very very high level of chemo to kill my immune system off, the next day I received my thawed out stem cells through a port they had put in my chest. The first 7-10 days aren’t bad, then the chemo hits and you are sick and extremely tired and absolutely cannot eat. My caregiver luckily was my sister-in-law, Colleen. My husband was willing but, you need someone that can cook and he does not…I didn’t want to starve to death either and ordering food from outside is not acceptable, because you don’t know if and how the food is washed.
Colleen, made me eat when I didn’t want to eat, when even the smell of food was horrible, she made me walk when I was too tired to move one foot in front of the other. The second I sat down, I fell asleep. Finally, I had to be hospitalized, I could not keep any food down or most importantly pain medications down, so I was in the hospital for 5 days, but I made it, I was alive.
Slowly, just about the time when you don’t think you can make it another day, you come out of the fog and things start looking better. From the hospital back to the transplant house and once my blood counts were back to where I had an immune system, I could go home, but boy was I tired, I slept most of the time, I still was not hungry. I had to force myself to eat; I thought to myself this is just like putting on socks, eating is something I have to do. After 7 weeks at the Transplant House, it was good to be home, still wore the white mask to prevent germs from getting into my system. Slowly but surely one day, I had a foreign feeling, it was my appetite, it was back, at least a little.
My blood counts revealed that I had a Very Good Partial Response to the Stem Cell Transplant, so they still wanted to put me on a maintenance drug called, Velcade that was in October 2009.
In December 2009 my cancer started to come back, they increased the chemo Velcade and added two other chemo drugs and wonder of wonders, it worked and has continued to work to keep the cancers number down. God answered my prayers and many, many others who had prayed for me during this time.
I will always have to be on some chemotherapy in order to keep this cancer away and in control. We were hoping to get at least 2-3 years out of this chemotherapy, before it decides to not work any longer, it has now been 4 1/2 YEARS!. Right now my chemo schedule is 3 weeks on and 2 weeks off. Originally Velcade was given as an IV, I started to suffer from some neuropathy, but that greatly improved when it was administered subQ, just under the skin on the stomach area. My chemo is given here in Fairmont at the Mayo Clinic Health Systems, though I see my oncologist Dr. Rajkumar once a month at the Mayo Clinic, Rochester, to make sure the chemo is still working. I am fortunate to have one of the best in this field of multiple myeloma. If this chemo doesn’t work then a new combo will need to be tried, this can take at least a month and in a month I can get substantially worse, so it’s always a race to find something that works. I asked him the last time I saw him, “Can I say that I’m in remission”, he said, “Technically No”, he went on to say that in order to get rid of every bit of this cancer, he would have to make me very sick, he felt it was better that we go for good control and right now it’s under excellent control. I recently have been changed to 3 weeks on chemo and 4 weeks off chemo.
At this point, I am needless to say, very thankful to be alive, I am thankful for an everyday ordinary day in my home, a day where my pain in under control and am able to enjoy my life. This is just my story; every person that has cancer goes through their own personal tale of hardship.
My advice to others, if someone around you has cancer, don’t be afraid to talk to them about it, sometimes just a quick note in the mail let’s someone know that you’re there for them. Find out what you can do for them, is it bringing food over, taking them to the Doctor, watching their children, doing cleaning chore or spring planting that’s become impossible for them to do. Sometimes, it’s just a phone call to see how they’re doing. Don’t be afraid to contact them.
Cancer can be and is a very isolating disease. I have lost much of my carefreeness, so to speak and I don’t know how or if I will ever get it back. Life many others who have cancer, I will never again take anything in life for granted, I treasure each day. They talk about after you have cancer that there is a new normal, if there is such a thing as any kind of normal after you’ve been affected by cancer. My most important things in life are God, Family and Friends. My belief in God has made this journey a much easier one, a wonderful, understanding husband and wonderful family and friends have also eased the path. For more information on Multiple Myeloma please contact International Myeloma Foundation at www.myeloma.org or 1-800-452-CURE (2873). I feel it’s very important to get support during this time for the patient and caregiver, Local Cancer Support Group help is available through Terry Whitman, Mayo Health Systems at 507-238-5175 or email Whitman.firstname.lastname@example.org.