I had never heard of Multiple Myeloma prior to my diagnosis this past January. It affects less than 1% of the population and it is somewhat rare that a seemingly healthy female in her early 30's would receive such a diagnosis.
Simply put, MM is a cancer of the blood plasma. The mutated plasma cells accumulate in the bone marrow and cause kidney problems and weakened bones. Most people don't even know they have the disease until they have spontaneously broken a bone. I consider myself lucky because I received my diagnosis prior to any broken bones or lesions appearing on my skeleton.
Because I was not familiar with this form of cancer and the warning signs, I ignored some of the symptoms as they came on, putting the blame on having a high stress job coupled with a toddler at home. I like to think I am in touch with what is going on with my body, but I totally missed the mark on this one. Although, I think it is pretty easy to blame symptoms like fatigue and irritability on being a working mother.
Looking back, I can remember starting to feel a little different around late Summer/Fall. Work had become extremely busy by this point and I wrote everything off as stress from the job. I had routine blood work done back in December at my OBGYN's office. They called me asking me to follow up with my regular doctor because some of my levels came back abnormal. Nothing was pointed out to me as urgent, so I wanted to get through the holidays and yet another busy spell at work before scheduling a follow up doctor visit.
A few weeks went by and a cold snap in the weather triggered a nose bleed. I wasn't surprised since the heat had seemingly been running constantly at my house for several days. The problem was that three hours later, my nose was still bleeding. My mother took me to the ER while John stayed home with Olivia.
I happened to mention that I had some abnormal blood work back in December (I specifically mentioned elevated liver enzymes), so the ER doctor decided to run a complete panel on me while I was there. When he came back with the results, I was shocked because the levels he was now worried about had been in the normal ranges the month before.
He noted my liver enzymes were nothing to worry about. He was particularly worried about my creatnine level, which had gone from .94 to 3.2 in just a month. Hemoglobin had gone from 11.5 (only slightly low) to a low 8 and my platelets had gone from 174 to 82. He said he was not going to admit me that night, but he wanted me to follow up with my doctor first thing in the morning to get an appointment.
Two days later, I'm at the doctor getting more blood work and a CT scan. He suggested I take the next couple weeks off from work while we figured out what was wrong with me and get me on some sort of treatment plan.
Fast forward two days and I'm being admitted to the hospital because of a fever over 101. I got to my room and it took me about 45 minutes to realize I was on the oncology floor. Immediately I knew this wasn't going to be just some sort of infection. Some people tried to be positive, telling me it was the safest floor in the hospital for me to be on, not knowing my diagnosis, but both the doctor in the ER and my regular doctor mentioned to me earlier in the week it could be some sort of cancer. The moment I looked up and saw the word "oncology" on the dry erase board in my room I immediately felt sick. My family's lives would change over the course of the next few days.
They reviewed the results of the CT scan that was done a couple days earlier and said it came back clean. Monday they would do a bone marrow biopsy and they should have a diagnosis for me by Wednesday. It was Saturday at this point. I wish I could find a way to describe the feeling of waiting for the diagnosis, but I don't have the words to describe what I was feeling that week. Anxiety doesn't really do it justice.
Early in the morning on Wednesday, January 21, I received my diagnosis and they planned to start me on chemo the next day. I received a full body x-ray and no lesions appeared on my bones, which was a good sign. Thank God for these large bones. For once.
One thing they wanted to talk to John and me about was whether or not we planned to have more children. If you had asked us two weeks prior, we would have told you our plan was to try for another baby starting this Spring or Summer. But in the week leading up to my diagnosis, I knew this was something I needed to discuss with John immediately. Depending on my diagnosis and treatment, I knew there was a possibility getting pregnant again would not be in my future.
We had made our decision before they came to talk to us about it in the hospital. I was already aware we'd have to put off treatment for at least a month in order to harvest eggs for the future, and I didn't feel like it was in my best interest to put it off. We needed to be thankful for what we have and start treatment the next day as planned.
Ultimately I ended up making the correct decision because the medication I will be on during remission as my "maintenance" drug can cause serious birth defects (like Thalidomide baby serious). Even if we had harvested eggs there is no way I could have carried a child in the future (and no way we could have afforded a surrogate). I can't say that this is an easy reality to deal with every day, but I remind myself of the beautiful child we have now and how lucky we are to have her and I make it through the rough moments.
A couple weeks after the bone marrow biopsy, my chromosome test results came back (this takes longer to come back from the lab). I won't get into huge scientific details (because I don't pretend to be a Myeloma expert at this time), but based on the blood work taken at the time I was in the hospital, they have diagnosed me with Stage 3 Multiple Myeloma. I am considered high risk and the cancer is more aggressive than 85% of other cases. The rate of aggression is determined in part by the rate at which the cancer cells multiply in the plasma. The positive aspect is that I am young and have not had previous health problems. As a result, my body can endure a more aggressive approach to treatment because my organs have not had the beat down in comparison to the organs of older Myeloma patients.
Following the chemo treatments I am receiving now, I will receive what they call an autologous stem cell transplant. The doctors will harvest my stem cells and store them for a few weeks while my body gets a break from chemo. I will receive a strong dose of chemo prior to the transplant, which will kill all of my remaining bone marrow (and pretty much wreak havoc on the rest of my body). The harvested stem cells will then be transplanted back to me, replacing the bone marrow that has been destroyed. I must admit I am a little upset they can't just inject me with adamantium and turn me into Wolverine because I'm pretty sure that would get rid of the cancer :-). Regardless, the scientific process that actually exists in real life will hopefully get me into remission and I can begin my maintenance treatment plan, which will include ongoing doses of chemo.
At this point, I have taken trips to MUSC and Emory to discuss my diagnosis and the plans the doctors at each facility have for my treatment. I will likely get into further details regarding these visits in a future post, but for now I will say I hope to have my stem cell transplant performed at Emory. The doctor there seems to have more experience with someone of my age and diagnosis, and his plan for treatment varied greatly from that of the doctor at MUSC. Unfortunately, Emory is out of network according to my insurance plan and I am waiting for my doctor in Columbia to send a letter of medical necessity on my behalf to hopefully get an exception. I have received mixed opinions regarding whether or not this exception will be approved. I'm keeping my fingers crossed because I feel like Emory is my best shot at getting into remission and staying there longer.
I will continue to keep folks posted on the status of the transplant approval/exception and my progress with treatment.
