Birds In Spring: Confronting The Initial Diagnosis
I don’t know about you, but I’m not too clear-headed about the appointment where I got my initial myeloma diagnosis.
First of all, I suppose I should have taken it as an ominous sign when the hematologist/oncologist’s office called me and asked if I could be there in an hour.
Basically, this is really all I recall:
We went into the exam room, and the doctor sat on his little wheeled stool. Linda (my wife) and I sat in two chairs in front of him.
Doctor: You have multiple myeloma.
Me (mumbling): I’ve heard of that.
Doctor: You can learn more about it on the Internet.
Then Linda left the room while he did a bone marrow biopsy/aspiration.
Truly, that’s pretty much all I remember.
To be fair, Linda says there wasn’t a whole lot of discussion at this appointment. She says her reaction when he used the term myeloma was to exclaim, “What in God’s name is that?” She says he gave us a quick rundown and talked only briefly about treatment, saying that would be decided at our next appointment in a couple of days. Maybe we talked about second opinions.
But, it’s like I wasn’t there. The part of my brain that was supposed to be engaged in this discussion just wasn’t functioning right.
Having spent many months before my diagnosis in a downward spiral health-wise, and not having any idea what was wrong, now that someone had put a name on it, my brain refused to process it.
Although having heard the term multiple myeloma somewhere along the way, I had no idea what it was. At first, when he said it, I wasn’t even sure it was cancer. I don’t think he ever even used the word “cancer” in describing what I had. In fact, now that I think about it, most of my doctors since don’t bandy about the C-word much, if at all. More often, it’s “your disease.” At my diagnosis, though, I think it might have helped my short-circuited brain if he’d said, “You have a rare cancer. It’s called multiple myeloma.”
Getting a cancer diagnosis is a defining moment in one’s life. And my memory of the event is rather ill-defined.
At my diagnosis appointment, my brain was out to lunch. It went “La-dee-da-dee-da-dee-da-I’m-not-going-to-listen-to-this,” over and over again, with its hands over its ears or whatever a brain does to drown out what’s going on around it.
The rational part of me wanted to know, but an irrational part was clinging to immortality and would not accept that there was something seriously wrong with me.
When I’d gotten the call earlier to come in to this doctor, I’d told Linda that I would go alone.
She said, simply and emphatically, “No you’re not.”
I can’t imagine what it would’ve been like without her there because I seem to recall she did all the talking. I can’t say for sure that I asked one single question. I don’t think I did. I just stared blankly – disconnectedly. You might think that I was in shock, but that would be giving me too much credit on the awareness scale.
If I’d gone alone, my retelling of the experience of the appointment when I got back home would have been just slightly better than incoherent. Perhaps like this:
Linda: What did he say?
Me: He says I have something. I think he said it’s called multiple myeloma. I’m not sure what it is. He said to look it up on the Internet. I think it might be cancer, but I’m not sure. He said I need some kind of treatment. Oh, and he stuck this big needle into the bone marrow in my hip and sucked a bunch of stuff out. It was unpleasant and painful, and I’d rather not ever do that again. I have to go back in a couple of days when he gets the result to talk about treatment. Oh, you know, I think he mentioned thalidomide. And steroids.
That would be about it.
Recently, we were out to dinner with some friends, one of whom gave me the “Twenty Questions” routine about my cancer.
He asked me some things no one else had previously asked about the run-up to my diagnosis. Such as, did I suspect that there was something seriously wrong with me? Did I at any time consider that I might have cancer? Was I in denial?
Well, the answer to all those questions is pretty much, no.
Part of the reason, though, was that I was regularly seeing my primary care physician during my slow deterioration. However, I didn’t know he really wasn’t doing a good job at investigating. Let’s just say that he never saw anything alarming in what I was going through. So neither did I.
His efforts to find out what was wrong over several months seem, in retrospect, half-hearted and probably contributed to my presenting at Stage 3 by the time my cancer was diagnosed.
My first real clue that there might be something seriously wrong with me was by way of self-diagnosis, when I began to suspect that there was something amiss with my kidney functioning. The thing is, for a guy it’s often easy to spot possible proteinuria (that’s a medical term that loosely means “bubbly pee”), which indicates there’s excess protein in your urine. There’s supposed to be little, if any at all.
It wasn’t until my kidneys started to fail that it was clear to me that I was in a serious health care crisis.
Even then, it took Linda’s intervention to get me speedily to the right doctor, for I had obviously failed miserably at the task.
Which brings me to the point that those of us with cancer really can benefit from having an advocate to help us through the turmoil of diagnosis and treatment.
You really shouldn’t leave home without one.
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Thanks for another excellent article, Lou. I really look forward to your columns.
I wonder if people's memories of their diagnosis are usually at one extreme of the spectrum or the other. That is, I wonder if people either hardly remember anything -- like you -- or they remember every detail like it was just yesterday.
I don't know for sure, but the things I've read and seen on TV make me wonder if it's common for people not to remember traumatic experiences, like accidents or being mugged. It's almost as if the body has some kind of mental defense mechanism for those sort of things. Maybe that defense mechanism kicked in for you in this case?
My initial reaction was denial. A cancer with no cure, no not for me. I’m too busy, too young and bullet proof. Cancer and death happens to other people, not me. That must be someone else’s results.
Denial lasted 24 hours.
Sid (NZ)
I nearly fainted. Disbelief. Healthy healthy me. A few months of fatigue leading up to blood tests & a BMB. My young doctor is a man of few words, delivers them quietly & gets on with treatment. I began Velcade/dex the next day without hesitation. I went alone to the diagnosis since my husband was out of town, and I had to tell him that night in an airport, on his birthday. We won't forget Oct. 8, 2008.
This is a very common experience for people who receive a not-so-great diagnosis. The brain hears something so jolting that it goes "out to lunch."
I never let my husband go to appointments alone.I would have to call the doctors' office and find out what happened if I did. He was so anemic and so sick at his diagnosis that he could not comprehend or remember anything the doctors said to him. I told all the doctors on my husband's case(he was hospitalized with strep sepsis) that they had better not go into his room with bad news if I wasn't there. We knew they were checking for cancer. They abided by my wishes, though what they did was tell me first in the hall and then I wound up being the one to break the news to him. The doctor never told me it was considered incurable. She said that he would probably go on Thalidomide and Dex(he did Revlimid/Dex) and have an auto transplant and she was confident he'd do very well. We thought that meant he'd be cured. I guess she meant he'd tolerate it well due to his age and general condition.
Looking back, she should have been the one to tell him. I had no idea what I was talking about and told him what she said which was somewhat misleading.
Strange as it may seem, it was a "relief" to be diagnosed with MM. Prior to the MM diagnosis, the Medical Team believed I had a rare autoimmune liver disease resulting in a much shorter lifespan than MM.
I guess it's odd to view MM as a blessing but there are worse diseases.
My initial reaction....I saw my doctor as I had not been feeling well...exhausted, unable to eat much. Labs were done and I was sent home. Prior to reaching my home, I received a call advising me to "go to ER immediatly, you are in renal failure". I was almost immediately diagnosed with last stage Multiple Myeloma. A day engrained in my memory.
Hi all,
I sent each of you a short note -- except to you Chuck, since I don't have your email address...but to you I'll say thanks for your extremely kind words, and for your insight.
It's always gratifying to see when people find usefulness in what I write here, but for me, I find the thoughts and experiences you share with me to be the most important part.
I can only thank you for sharing.
I hope everyone is doing well today.
Thank you for this article. I was just diagnosed with MM in the early stage. Like everyone else, I feel like a good heart to heart discussion with my Doctor would be very beneficial.
Thank goodness for the internet..... that's where I'm getting my information.
Exactly 1 year ago, on November 4th, I went for an MRI to investigate severe right leg pain. This had been going on for several months, and I was now hardly able to walk. So I booked myself out of the office and arranged the MRI. The colleague who read it was whitefaced when he spoke to me, I felt sorry for him. Any way, the differential diagnosis was between a plasmacytoma of the right iliac crest with spinal bone marrow involvement with multiple myeloma, or metastatic bone cancer, the primary unknown.I went home and prayed for a iagnosis of multiple myeloma. Turned out I had stage 2 MM,without any bone or kidney problems.I had 13q deletion. Except for velcade induced peripheral neuropathy,am in complete remission post SCT.Am on revlimi. Except for easy fatiguability, feel great.
Had great nurses and doctors, especially my oncologist,am a little in love with him,oh to be 20 years younger.
I didn't realize that Lou was writing a column until today when he forwarded this and other columns to me. I have known Lou since 1981 and he is a terrific person with a sharp sense of humor and, as you are all now aware, an excellent writer. All of your comments are straightforward, touching, and humbling and I wish you all the best in your health care. I know firsthand of another's reaction to a tough diagnosis and Lou's reaction was not unusual. My close friend went alone at the age of 40 to hear that a breast lump was malignant, which she never expected, because she had regular mammograms with no bad news. It was picked up for a life insurance policy exam that wound up saving her life because it was caught early and did not spread. She hated to use the following cliche, but she said when the doctor told her she "felt like she was falling through the floor," and barely understood anything he said to her. Lou is right that it is invaluable to have someone who cares about you at your side.