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Myeloma Lessons: I Am Not Alone Anymore

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Published: Jul 4, 2014 1:17 pm

The title of this column is a bit of an overstatement. I never lived alone as a her­mit in a cabin in the woods. I have loving, caring family and friends.

However, I have always been comfortable with a fair amount of alone time. In fact, I often crave it.

I heard a recent radio interview with Jane Goodall, the famous prima­tol­o­gist and anthropologist. The interviewer asked her if spending years in the jungle among the chimpanzees drove her stir crazy. She said, “Not at all. From the time I was a child, I always enjoyed being alone.”

I thought: That is me.

Even as an adult, taking long bike rides alone, or walks in the woods accompanied only by my own thoughts, has been comforting.

One of my fellow Myeloma Beacon columnists wrote recently that, prior to her myeloma diagnosis, she didn’t think too much about doctors and rarely needed their help. That describes me as well. In fact, usually when I went to a doctor, the result was: the tests are negative — nothing serious to worry about.

Which is why, when the first signs of myeloma appeared, it never occurred to me that anything was seriously wrong. That sore spot on my head that persisted for months? Just an invisible mole or an ill-fitting bike hel­met. The pain in my back/rib? Just a muscle strain or spasm.

Much has changed since my myeloma diagnosis was confirmed, and it changed rather quickly. I was ad­mit­ted to the hospital with severe anemia on a Friday evening, had a bone marrow biopsy the following Monday, and saw the myeloma specialist on Tuesday. A week later, I reported to the infusion center for my first Vel­cade (bortezomib) shot and Zometa (zoledronic acid) infusion.

I have always prided myself on being pretty self-sufficient. I have never liked asking for help or having to rely on others to do what I can do for myself. But, after the events I just described, it became clear very quickly that I was going to need a lot of help.

Some of the help I would need was obvious: Having a strong medical team of doctors, nurses, technicians, and other medical support personnel would be essential. Of course, I would also need the strong support of my wonderful girlfriend/caregiver.

But one thing I had not counted on at first was the physical restrictions I experienced. Once my transfusions took effect and I had my energy back, I felt pretty good (except for that pesky rib pain). However, my doctor said I had to limit the weight I lifted to 10 pounds.

Well, that seriously restricted what I could do around the house. Now, I must confess that I have not strictly adhered to that limit, but I have been careful about lifting heavy objects. So now I need a neighbor, relative, or friend to do the heavy lifting.

This sometimes makes me feel a little helpless.

This past winter was particularly harsh here in Pennsylvania, where I live. Plus, I had my transplant at the end of January. So my neighbor, my son-in-law, and his father had to shovel the snow around my house. All I could do is stand by the window and watch.

Another aspect of accepting help revolves around learning about dealing with the disease.

As most of you know too well, treating myeloma is as much art as science. To be sure, the science part is extremely sophisticated and is advancing at a rapid clip. But there is no complete consensus on how to treat a particular patient presenting a given set of symptoms.

There are “schools of thought,” different approaches, and strong but conflicting opinions among myeloma experts. My initial treating doctor told me that declining to proceed with a transplant would be “suicide.” Another equally prominent expert thought that position was silly. So how do we make these important de­ci­sions?

For me, the answer was, and still is, that I need help.

There are vast resources available online to research the disease, the treatments, and the developments on the horizon. It truly is amazing what is available in the way of research papers, interviews, and scholarly ar­ti­cles.

But just as important as the help available for understanding the science of the disease has been the help from fellow myeloma patients who have taken their time to share their personal stories and insights into how to deal with the many challenges myeloma creates.

Through the Myeloma Beacon’s discussion forums, I have met many people who have been so helpful to me. Sometimes they helped me by commenting on questions I have posted in the forums, and other times through an exchange of emails or telephone calls.

Coming to terms with the need for all of this assistance has not been easy for me. When you have been used to being the strong one, the one who can fend for himself, and the one who always has the answers throughout your whole life, it is difficult to become so reliant on others.

But there is a lesson here, as there often is when life throws you a curveball and forces you to change.

Becoming more reliant on others also brings you closer to those who step up to help. You appreciate not just the fact of living, but the people around you who make living a wonderful thing.

So far, dealing with my medical condition has taught me quite a bit about myself. But even more so, it has taught me about the great people who have come forward to help.

So I am not alone anymore, even in a relative sense. I am not happy for the reason why I find myself there, but I treasure the increase in company that I keep.

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

If you are interested in writing a regular column to be published by The Myeloma Beacon, please contact the Beacon team at  .

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

  • Judy Wirtz said:

    Thank you Andrew for sharing another view that many of us share in common. I want to thank all of you myeloma fighters for your articles. You are my lifeline. I do go to LLS meetings but as of yet, I have not found another MM person who attends. Living in a rural area, I find it very stressful to fight the highways to go to a MM meeting 40 or 50 miles away. Thanks to all of you out there and let's keep fighting.

  • Nancy Shamanna said:

    Thanks Andrew for a well thought out column. I agree that one is left with a feeling of helplessness at times, when confronted with such a complex disease as myeloma. Sounds like you are coping with this really well.

    I also had to drastically reduce any lifting I did, even though at times I would like to lift heavier items by myself. I did learn though that it's not a good idea to do that! Once I lifted a piece of furniture that must have been over 50 lbs by myself and suffered back pain for at least two months afterwards! Yikes ... my family and my oncologist were really annoyed with me for doing that!

    I no longer mow any lawns, which has freed my time up for more flower gardening, and didn't do any snow shovelling for the first few years. Recently I got a small shovel that has an 'ergonomic' curved handle for just clearing the walks of dustings of snow. We do not have the amounts of snowfall that you do in the east though ... I know that it was a very snowy and stormy winter there.

  • Olin Sterrett said:

    At the risk of being redundant, Mr Gordon's comments reflected my mindset: Before my diagnosis, I would label myself as a solitary individual. The cancer has changed that -- somewhat.

    The medical staff here in Orange County, New York has been outstanding! This includes all involved in my treatment from doctors and nurses to support staff. I am still learning a great deal about insurance, the long process of the various treatments AND myself.

    Being a bachelor, it is sometimes very difficult to find a friend to pick me up from the hospital (I am from Michigan, so I do not have a relatives in the area). As Mr. Gordon states, I feel I can "do it myself." On the other side, I must learn to accept assistance from people who are truly concerned about my well-being. It is a journey.

    Regards,
    Olin

  • Mike Burns said:

    Great column, Andrew!

    I have experienced a lot of the same things you describe. To go a little further with one of your points and in line with Nancy's comment - there is a balancing act that we need to perform. On the one hand, we do need to be aware of the limitations that our new reality imposes (like not lifting 50 pounds in Nancy's case). But, on the other hand, most of us benefit from pushing ourselves, physically and mentally. Often the boundary between doing that and doing too much is blurry. And that boundary line changes from day to day, or even hour to hour sometimes. So it is a tough balancing act.

    You are so right in saying that becoming more reliant on others (or another way of saying it - accepting help from others) brings you closer to those who step up to help.

    Best of luck to you.

  • Terri J said:

    It's hard to admit you need help, especially when you are young. Our daughter at the age of 32 was diagnosed with myeloma. She is a vibrant, independent, on-the-go single young woman. The grief of realizing your life is limited and you need help from Mom and Dad is something hard to take. It's hard for me as a caregiver because I don't want to treat her like my little girl -- she is an adult. It's a fine line. There are a few young people who have been diagnosed with myeloma. I'd like to see articles about them dealing with fatigue, side effects of Revlimid and treatment, transplant, and the grief of never being able to have children or meeting someone to partner with, dealing with working and dealing with needing help at such a young age.

  • Jan Stafl MD said:

    Dear Terri J, I'm so sorry to hear of your daughter's situation. Remember, we do not choose our challenges, only how to respond to them. I'm a 57 year old OB/GYN doctor who was diagnosed in July 2011 with high risk myeloma, and have been through all FDA approved treatments, including an ASCT in 2/2012. Still dealing with it!

    My main advice is to continue to educate yourself with your daughter about her options, as there are many, with ever improving therapeutic results. Definitely see a myeloma specialist, maybe two or three if you can. There are many new treatments on the horizon which may work for a long time! Also, do not expect to get many of the side effects mentioned by other Beacon columnists, because young patients often get less adverse results with many treatments.

    The other thing is that it is possible in most cases for your daughter to bank her ovarian eggs, and get pregnant if she so desires. There are some entries about this on the Beacon. The experts to see on that are reproductive endocrinologists.

    Your emotions are never wrong, and a counsellor or good support group can help both of you. I am not providing medical advice here, but I hope these comments are useful for both of you. Best wishes! Jan

  • Tabitha said:

    Hi Andrew,

    I wholeheartedly agree with you: living with myeloma is both art and science! I strive to keep it all in "balance" as much as possible, especially for my husband (the patient)'s sake. I credit much of my/our coping with knowing that we aren't alone in all of this. Columns like yours help us all. Keep strong!

    Thanks for sharing,
    Tabitha

  • Sylvia B said:

    Hello, Andrew!

    Great column. It's a "new normal" for us mm patients, for sure. Just not being able to lift something which was easy for us earlier is an adjustment, but we can do it and...move on with confidence. Thanks for helping me and others along.

    Sylvia

  • Matt said:

    Hi Andrew

    Great column. So much of what you wrote was exactly what I've experienced.

    Thanks, Matt