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Myeloma Lessons: Was It A Good Day Or A Bad Day?

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Published: Aug 20, 2014 4:51 pm

A couple of months ago, my girlfriend Audrey and I received email invi­ta­tions to my grandson Blake’s first birthday party. It was scheduled for June 28.

When Audrey and I discussed the invite later that day, she asked:  “You know what that day is?” I thought about it but I drew a blank. She said: “You know … that is THE DAY!”

Then it hit me.

It was June 28, one year prior, that I received the call from my family doc­tor telling me that the blood test I had taken earlier that day showed that I was severely anemic. I was “encouraged” by the doctor to go to the emer­gency room immediately to get a transfusion. That started the rather short jour­ney to my multiple myeloma diagnosis.

So after reminding me of the significance of June 28, Audrey said: “That was a really bad day.” I replied, of course, that it was a really good day.

Those people who know Audrey and me well might simply write this off as yet another instance in which we disagree. You see, Audrey and I have been together for quite a while. We share a home and are very happy together. But to say that we are an example of “opposites attract” is a serious understatement. It sometimes seems that we disagree on everything.

Yet our differing views on the significance of the diagnosis are, I think, not uncommon among cancer patients and their caregivers.

For months prior to “The Day,” I had been experiencing symptoms which turned out to be warning signs that I had myeloma.

First, I had a sore spot on my head. Everyone from the woman who cut my hair to my family doctor examined the area and found nothing.

Then, I had some pain in my left shoulder. I thought it was just wear and tear from years of abuse. So I cut out some of the exercises that seemed to aggravate the pain.

Then I had my most severe “symptom,” pain in my back/rib area. I treated it with a combination of chiropractic adjustments, physical therapy, and acupuncture for six weeks. I wrote off the difficulty I had breathing while exercising to strained muscles in the rib area.

All of these problems were weighing on me, and I was becoming frustrated by the lack of any improvement.

Audrey was aware of these issues but did not appear to be overly concerned. After all, I have a history of musculoskeletal issues, many the result of overdoing it. They are called overuse injuries. If a part of the body can become inflamed from overuse, I have experienced it.

But for some reason, this latest episode seemed different to me. And when my chiropractor recommended an x-ray which, in turn, showed a broken rib, I suspected something more was at play, since I had suffered no trauma to the area. And when I researched spontaneous rib fractures, none of the likely causes made me feel very good.

The call from my doctor that I had severe anemia and needed an immediate transfusion was shocking to both Audrey and me. However, we had very different views of what it meant. She thought that I probably needed to change my diet. My concerns ran a bit deeper.

I knew that my diet was good enough to prevent severe anemia. I also thought it was unlikely that I was bleed­ing internally, another potential cause of anemia. So the only thing left was the likelihood that some­thing was “eating” my red blood cells.

The doctor in the emergency room overseeing my transfusion, without saying it directly, confirmed my con­cerns.

It was only slowly dawning on Audrey that we were dealing with something serious here. She was starting to feel like this might turn out to be a bad day.

I, on the other hand, was starting to see some clarity in my situation. All of the uncertainty that I had been deal­ing with was beginning to resolve itself. I had a disease that was responsible for these myriad of symp­toms. We simply needed to pin down what it was and develop a plan of attack.

I was hospitalized overnight to receive the transfusion. Much blood was taken, and tests were run. We were told that a doctor would be around in the afternoon to talk to us. I was looking forward to the visit.

When the doctor arrived, Audrey, my son Jack, and his fiancée (now wife) Melissa were in the room. The doctor had a grave look on his face. As he began to talk, I could see out of the corner of my eye that Audrey had a look of horror on her face. I was calm and not upset at all when he told us that there was a 95 percent chance that I had multiple myeloma. Confirmation would come with a bone marrow biopsy.

The doctor gave us some general information on treatment options and explained that the hospital had a myeloma expert. I cannot say that I was giddy with the news, but I had a sense of relief. The enemy had been identified. Now we could go to war.

As odd as it sounds, the 24 hours leading up to that point were for me “a good day.”

Audrey had a far different reaction. She was “hit by a truck” and was, not surprisingly, upset. Because she had not lived in my body and my brain for that time of uncertainty, she had no idea that we could be facing something this serious. So, for her, this was “a very bad day.”

I have heard it from both myeloma patients and doctors that one of the real challenges in treating the dis­ease is raising the awareness of the early signs of myeloma in the medical community and the general pop­u­la­tion. While early detection may not enhance the chances of a real cure for any particular patient, it can cer­tainly help prevent some of the physical consequences of the disease, primarily bone deterioration and kid­ney damage, which may result from a failure to detect the disease early.

Audrey thought the diagnosis was bad because now we had to deal with a difficult, potentially fatal, disease.

I thought that it was good to know that I had myeloma. I had some bone involvement, but nothing like what some others whom I have met or who have described their condition in the Beacon discussion forums have experienced.

Sometimes it is just good to know the truth.

Andrew Gordon is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of her previously published columns here.

If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .

Photo of Andrew Gordon, monthly columnist at The Myeloma Beacon.
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10 Comments »

  • R said:

    Happy Anniversary,…I guess.

    You have a nice “take” on the “knowing and doing something about it”, versus, the “ignorant and hit me hard before I can even do anything”.

    Andrew, You have a will like steel. If anybody can ride this “doggie” well, it’s you.

    Good luck. ( And Happy Anniversary)

  • LibbyC said:

    Hi Andrew,

    Was it a good day or bad day? It was both. A couple of months prior to diagnosis I found it hard to live with my body, sensing / knowing that something was wrong, but not knowing what. I was running around trying to finish a lot of “projects” I had on the go – I had a sense of urgency to finish the tasks. I even had a dream about an X-ray of my body ~4 days prior to diagnosis – that morning I cried and told my husband I was really worried.

    Diagnosis – it all made sense (my sense of relief was enormous), so that part was good. This is the problem I have, so let’s fix it. The bad part: I really would have preferred a prolapsed disc.

    Take care (and happy anniversary) – it’s 5 years so far for me.

  • Joe S said:

    Well said Andrew. The not knowing what it is, was harder on me than when it was diagnosed. Knowing something is wrong, going to the doctors, and even having symptoms that suggest there was a diagnosis that could / should have been made, is frustrating. I would help in any way I could to spread awareness and prevent others from getting a stage IIIB diagnosis as their first encounter.

    January 2014 I started researching MM. This was 4 months after my diagnosis. What I learned was, this disease can present itself in varying ways. I have nausea all the time. The woman I sat next to for 7 hrs yesterday, during stem cell collection, has never had nausea. I have had many fractured and broken bones. She had no bone problems. The guy I sat next to today during my second stem cell collection I had to undergo, never had much nausea either. Several folks have had problems I haven’t. It seems there is no set symptoms or obvious path this disease takes. Hence, multiple myeloma lives it’s name.

    This is my first visit to this forum. The guy I sat next to all day told me about it. Looks like there are some good discussions I have already read. I look forward to learning more.

    Thanks,
    Joe

  • ellen harris said:

    I can relate very well to your story; mine was quite similar. After suffering with rib and sternum pain for about 4 months and being misdiagnosed with costochondritis and bursitis and prescribed steroids and physical therapy, the pain kept returning. When I noticed frothy urine I insisted that my internist test me for myeloma. She resisted a little, but finally relented because my dad had it, succumbing in 1969 at age 50.

    Unfortunately my suspicions were confirmed. The delay in diagnosis cost me some kidney function. I have kappa light chain and my count was over 12000 at diagnosis. Currently in 6th round of RVD. Responding well to therapy. Stem cell on the horizon.

    Andrew, I enjoy your columns. I wish you the best in your treatment and recovery.

  • Nancy K said:

    Andrew, I smiled when I read your descriptions of the things you were trying to counter your symptoms with prior to diagnosis, because I, like you, tried similar home fixes. I also came up on my doctor’s radar because of anemia.

    Before an appointment with the doctor, I decided that because I was getting winded more easily and had no stamina, I should step up my exercise regime. My back was sore, so I did more stretches. I thought “it’s all down hill after 50″. I was 54.

    But I, like Audrey, felt like I had been hit by a truck at diagnosis. I’d been an extremely healthy and fit person. Where did a serious disease fit in? Of course I’d never heard of myeloma, so I wasn’t quite sure why the doctor was using such a serious tone with me. It sunk in slowly, but I did come to realize that without treatment I wouldn’t have gone much farther. In my blissful state of denial I was getting quite ill.

    So I guess diagnosis was a good day. I have gotten 7 more years with family and friends.

  • SusanMary said:

    Andrew, thank you for an excellent column. I can relate totally to your story. I have always said that I deal better with my myeloma when I am relapsed than when I am in remission, as when I am in remission, I am always waiting for it to come back. Knowing is far, far better than being in the dark and wondering what on earth is wrong with you.

    My diagnosis 18 years ago came as a complete surprise to me as I was fit and healthy and not experiencing any symptoms other than a broken rib. Diagnosis came very quickly after that break, thank goodness. It would have been terrible to have been left wondering how the fracture had happened.

    Like Nancy K, I think diagnosis day was a good day. How long could I have gone on before I started to have symptoms of myeloma I wonder.

  • Andrew (author) said:

    Thanks for all of the interesting comments.

    R:I appreciate your vote of confidence. I have for my whole life preached the value of “mental toughness.” Now I get to demonstrate it and I fully intend to.

    Libby: For those of us who are “body aware” it becomes an obsession when we know something is wrong but cannot pinpoint it. So just knowing is good.

    Joe: You make a good point about the variety in initial presentation. For many years I had varying degrees of night sweats. I just thought I was “hot blooded!” It was only after a few rounds of VRD which brought my M Spike down quickly that I noticed the night sweats were gone. I guess that was a warning sign too.

    Ellen: Interesting that your father’s experience heightened your awareness of the disease. It also demonstrates the value of insisting on appropriate testing no matter what your doctor says.

    Nancy: Sometimes being fit can be a bad thing since it may disguise the real cause of the symptoms. May be the subject of a future column.

    SusanMary: An interesting variation on the theme. Perhaps you can expand on your experiences since you are 18 years post-diagnosis and have apparently relapsed more than once. Since my M Spike has started to creep up, how you have dealt with the ups and downs would be enlightening to me.

  • TJ13 said:

    Out 32 year old daughter was diagnosed on January 12,2012. It was the worst day of my life. I think she was relieved to know what was wrong since symptoms had started about a year before and slowly escalated. By the time she was finally diagnosed, her kidneys had started to fail, severe anemia, bone lesions, all the symptoms. She had been going to the doctors and had several tests starting about 6 months before diagnosis, but because she was so young, myeloma was not a thought. We had never heard of it.

    Early diagnosis is key to prevent some of the problems she has had to deal with.

    Like I said, it was the worst day of my life.

  • Rick Crow said:

    Good article, Andrew. It’s amazing how different perspectives produce different reactions.

    Mine was a bad day. The only symptom that I had was neuropathy in my feet which MM in and of itself doesn’t generally cause. I thought, perhaps, it was type 2 diabetes since my father had that. I went to the doctor to find out. A blood test ruled that out, as well as a trip to the neurologist who diagnosed it as idiopathic. A urine test, however, indicated a much elevated level of protein and microscopic blood.

    This triggered a trip to a nephrologist who ran some more comprehensive blood tests. These tests, basically, found the problem. He diagnosed me with light chain deposition disease and referred me to an oncologist / hematologist whose ultimate diagnosis hit both my wife and me like a ton of bricks.

    I’m thankful, however, that I was diagnosed prior to any bone issues occurring. All scans have been negative. I just hope that I can keep it that way indefinitely.

    Rick

  • Andrew (author) said:

    TJ: Heightening awareness in both the general population and the medical community is key, as your daughter’s experience underscores.

    Rick: I can understand your perspective, but at least you caught it before you suffered some of the effects that many in this community have had to deal with.

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