‘Your oncologist never mentioned it? It’s been showing in your blood tests for over 2 years.’ All I could think of is, ‘If the life expectancy is 5 years, I have 3 left.’: Woman shares Multiple Myeloma diagnosis journey

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“Have you ever thought about what would run through your mind if you were put on death row? How you would cope with that fact? I am willing to bet most of you have not had this thought, because most of you don’t think of death row or how we end up there, unless we are just into that kind of maniacal mess. Well, even though I have not followed down that scary path or have been unjustly prosecuted for some sort of killing frenzy, I have and currently sit on death row. How, you might ask? Allow me to explain to you.

Have you heard of Multiple Myeloma? I’m willing to wager that the vast majority of you have not. I hadn’t. No one I know personally had ever heard of it either. Most people, when they venture to guess, think it’s some form of skin cancer, but it’s not. Multiple Myeloma is what put me on death row. It’s a blood cancer for which there is no cure for. At least not an FDA approved cure. There are plenty of trials going on right now and it is highly possible one of them may just be that cure. One can hope. But, for the moment, I still sit on death row.

In 2012, I was diagnosed with Breast Cancer. Stage II ductal carcinoma in situ, or DCIS for short. ER/PR +. What does that mean? Basically, I had breast cancer in a mammary duct that had not spread to any other place, but it was large enough (grape size) to be considered stage II. And my lovely hormones, estrogen and progesterone, were feeding the beast inside me. It was caught early enough (because it hadn’t spread yet) that all I needed was a lumpectomy, a few doses of chemo, and 6 weeks of radiation. I did it all because I did not want this to come back because the doctor told me if it did, I would deal with cancer forever.

Courtesy of Melissa Brigance
Courtesy of Melissa Brigance

By 2013, I was given the all good and I rang that bell harder than I probably should have. I was a proud survivor now. I did monthly, bi-monthly, quarterly, and then bi-annual check-ups for 5 years. I was on my 5th year when I had to change primary doctors because of insurance. They demanded I establish with her. As much as I protested, because I was honestly sick of doctors, I am forever grateful for them forcing me to make that appointment.

When I met Dr. Holley, she seemed nice, but very business-like. She got right to the point and I explained my history and we discussed eating habits and such because I wanted to lose a little bit of weight. Who doesn’t, right? Routine things. She decided to run blood work because in my family history, my mother has thyroid issues. No biggie.

That same week, I had an appointment with the oncologist on February 10th that was doing my breast cancer follow up. I had been seeing him for over 2 years at this point. I always kind of dreaded going to his office. I felt like I was part of a herd of cattle being led to slaughter, but getting a checkup first to make sure I was fit for the slaughter. In and out.

My appointments were less than 10 minutes 90% of the time, even if I had questions to make sure things were good. Regardless of what I tried, they were still very rushed appointments. I thought this was normal. I hadn’t been through this sort of thing before, and I didn’t want to be the dramatic patient being problematic because I wanted more time if nothing was wrong. This appointment was no different.

He came in, had my blood test results ready and said everything looked perfect, ‘Let’s do the exam.’ And that was it. I asked again, so everything is okay, he said it was. So, I went on about my business. The following Monday, I was working from home and at about 7 p.m. I got a call from Dr. Holley. She said she had my blood tests back and one was concerning to her. She said it showed an ‘M Protein’ in my blood. I asked what that meant, and she said it could be that I have Multiple Myeloma.

I asked what that was because I had never heard of it. ‘Blood cancer.’ Then she asked if my oncologist had never mentioned this to me before, because it had been showing in my blood tests for over 2 years when she looked in the system at them. I felt like I was going to vomit. Cancer? Again? WHY?! What have I done to deserve this?! WHY did he not tell me?! She told me not to panic, it might not be that, but more tests needed to be ran to see. She asked me to come in for some follow up blood work. I told her I had an appointment the next day, February 14th, for a mammogram and could have my oncologist run it. She said okay, but if he couldn’t do it, she would have it there for me.

So, I did the one thing you should never, ever do when you are told something like this. Googled it. I should not have done that. I should have waited. All I could find was it is an incurable form of cancer and most patients did not live past 5 years. 5 years??? I had a 10-year-old at home, a husband, older kids. What would happen to them? I went into full blown panic mode. I couldn’t sleep that night. I was a total mess. All I could think of was, what would my family do?

Courtesy of Melissa Brigance
Courtesy of Melissa Brigance

The next day, I arrived at my mammogram early. I think I got maybe an hour or two of sleep. How could I sleep with this hanging over my head? I made it through my mammogram and then went to the desk to ask to speak with the oncologist to tell him what Dr. Holley found. They went to speak with him and came back and told me he said I could make an appointment, and his appointments were a month out at that point. I think that snapped something in my mind. I lost it.

I told them I was not going away and he could make 2 minutes for me to speak to him, so I know what to do. At this point, I was in tears. Scared. They went back and I got the same answer. So, I informed her I was not going to leave until I spoke to him. So, I stood there crying like a baby. I think I scared the girl at the desk, because she went back and next thing I knew, she was taking me back to speak to his nurse practitioners.

I explained it all to the 2 NP’s that came in. They told me the oncologist felt Dr. Holley was just being ‘hyper-vigilant’ and I was fine because all my tests have been good, but they would go ahead and do a urine analysis to make me feel better. Say what?! I was livid, yet relieved at the same time. Maybe it was nothing. So, I did the test. Two days after, I got the call from the oncologist – Dr. Holley was right. There was an M-Protein in my urine and he wanted to do a bone marrow biopsy to rule out Multiple Myeloma. I asked if he thought that’s what it was, and he said no. ‘I’m just doing the test to make you feel better about it.’ He felt I had something called monoclonal gammopathy, which was not a death sentence. So, I agreed.

I did the biopsy. Talk about some serious pain. I had to wait a week to pick up the results. That was standard with bone marrow biopsy’s. Personally, I think it was a load of horse manure, but that is just my opinion. I think at this point, he was just trying to do damage control. I think he knew as soon as I questioned this on February 14th, he had messed up. That made me angry beyond words.

I went in for my results and my husband went with me. I was nervous. I felt as if my life hung in the balance, and when you think about it, it did. That isn’t a pleasant feeling. I was scared. My husband tried making small talk and making jokes to lighten me up a little. I could tell he was scared. We rely on each other so much; I wasn’t sure what he would do if something happened to me. We love each other so deeply and where you find one of us, you will find the other. Not because anyone is clingy or controlling, but because we deeply enjoy each other and being together. We are truly each other’s best friend.

Courtesy of Melissa Brigance

When the oncologist came in, I looked up at him and he wouldn’t look at me. I knew. I knew in that moment I had it. Multiple Myeloma. This man had messed up and let it go for over 2 years. All I could think of is, ‘If the life expectancy is 5 years, I have 3 left.’ How?! I said a choice word I won’t repeat here, and he looked at me and asked what. My husband looked at me and said the same. I said, ‘I have it.’

My husband told me he hadn’t said that. I snapped. I started to yell and said he didn’t have to, the look on his face gave it away. ‘Can’t you see it?!’  The oncologist put his head down even further. Then, he lifted his head and confirmed my fears. I stopped him and said I did NOT want an expiration date. I told him he had done enough and he doesn’t get to give me an expiration date! Then he went on to tell me the Myeloma was in 80% of my body and with new meds out, I can expect a longer life expectancy, like 10-20 years. I guess he thought that would make me feel better. It didn’t. He said he could treat me, he has other patients that have this and are going strong. I said absolutely not! My husband was holding me down at this point. I guess he thought I was going to rough him up. I wanted to.

That night, I cried and cried. All I could think of is this must be what people who are sentenced to death row feel. Helpless. Completely helpless. I know most deserve to be there, however some do not, and I felt like one of them. For 2 weeks, I was afraid to sleep. I was afraid I wouldn’t wake up. Nightly, I fell asleep on my husband’s chest as I cried myself to sleep. He tried so hard to help me, but honestly, I felt worse for him. He was trying to be so strong for me and our daughter, but I know he was scared, lost, and sad. He didn’t deserve this, either.

I was transferred to another blood specialist who worked with Myeloma patients. Even though I was afraid of doctor’s now, this doctor was completely amazing. He took time with me. He explained his course of treatment and offered to send my stuff for a 2nd opinion at the Mayo Clinic to reassure me. They recommended the same course of action he did. I went on chemo right away and had a stem cell transplant. My new doctor was always cautious when speaking of the outcome. He never said I would achieve remission. Only that if all went well. He was real with me, yet still managed to make me feel as if I could do this.

When I did a stem cell transplant, I bounced back faster than most. My oncologist now said he was impressed. I went home after 15 days in the hospital. My numbers were higher than expected and I felt pretty good. It takes a while after a transplant to get to normal, but it didn’t take me long. I almost felt myself again.

I eventually moved to be near an actual Myeloma specialist, which is highly recommended for those who have Myeloma. I hated to leave my doctor who did my transplant, but the hospital there was limited in what they could do, and the new specialist was world renowned and one of the top researchers in this field. When my Specialist looked over everything done, he said he wouldn’t have done anything different. He continued me on the same course of treatment because I will be on chemo forever.

I am in remission now. I actually show no sign of the M-protein now. No spikes in my numbers. Stringent complete response, meaning I should have a long-term outcome before progression again. I have since met people with this that are still in ScR 20+ years later. One person is at 30 years! It gives me hope.

To anyone going through this horrible beast, as I call it, you have to believe in up above. Now, I know some will say they don’t believe in above, and that’s okay. Just believe in yourself and learn as much as you can from your doctor. If I can do this, so can you. For those who have lost people to this beast, I am so sorry. It’s not always the same for everyone, but there have been so many new medicines and procedures to help now. To anyone fighting, stay strong my fellow Myeloma Warrior!”

This story was submitted to Love What Matters by Melissa Brigance of League City, Texas. Submit your own story here and be sure to subscribe to our free email newsletter for our best stories.

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