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Myeloma Lessons: Hey, Hey, I’m A Mentor!

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Published: Sep 15, 2016 7:31 pm

Webster defines a “mentor” as “an experi­enced and trusted adviser.” I have served in my work life as an adviser, and I think it fair to say I’ve been viewed as both “ex­peri­enced” and “trusted” when I’ve taken on that role. However, I have never really con­sidered myself to be a mentor.

Sure, I have given people advice, but it was never in any kind of a formal setting. The whole “mentor-mentee” thing came into vogue in recent years, but being an old school type, it never really ap­pealed to me.

But now I am officially a myeloma mentor!

Let me explain.

Like many of the good things that have happened to me, this opportunity came about in­directly and fortu­itously.

One day well over a year and half ago, I was hanging out in the hospital infusion room enduring another seem­ingly endless Aredia (pamidronate) session. Is was a bit of a slow day in there, so Nurse Patti and I spent some time chatting about multiple myeloma, the various treatments for it, and their side effects. At that point in my myeloma odyssey, I had become fairly well-informed on a number of myeloma-related topics. When we were finished, Patti remarked that, with my knowledge, I would be a good fit for the hospital’s mentor program.

It turns out that the hospital where I receive treatment has a program that matches patients and caregivers with other patients and caregivers who have experience in dealing with similar situations. It is a bit like a support group, but focuses on one-on-one interactions. Not being a support group person, but wanting to help others, this seemed like it might be a good opportunity for me.

I didn’t jump on it right away since I was still very busy with work, but I put it in the back of my mind for the future.

This past winter, I got back in touch with Patti to start the process of getting qualified for the program. And boy was it a lengthy process!

First I had to attend a hospital volunteer orientation session. Then there is a health screening and an immunization check. I was worried that, since I had gone through a stem cell transplant and been re-immunized, I would not pass the test because I could not receive live virus shots like the measles, mumps, and rubella (MMR) vaccine. But luckily my titers came back positive.

Then came child abuse registry clearance, fingerprinting, and a criminal history records check. Someone then had to analyze all of this information and pronounce me ready to volunteer. This took several months.

Finally, I was ready for the last step: the mentoring training. This consisted of a session with Patti during which she went over the program guidelines and we did some simple role-playing. The hospital is rightfully very careful to emphasize that mentors are not health care professionals and must not give any treatment advice.

So now I finally was set to actually mentor.

To date I have had only a couple of mentorship encounters. To get started, Patti asked me to come to the infusion room one morning to talk to patients and also to some of the nurses who deliver treatments to multiple myeloma patients.

I was able to speak with two patients that day. The first was a man in for his Velcade (bortezomib) shot, so I had only a short opportunity to talk with him. I gathered from Patti, who knows him as a member of her church, that he is very shy. As we talked, I got the impression that he had never before spoken with another multiple myeloma patient. As the conversation went on, he became more comfortable and began to talk about his experiences. I am hoping that he will reach out to me so that we can continue the discussion.

The second patient was a woman who was in for a stem cell transplant. The hospital now does transplants completely outpatient, so she was in an infusion room waiting for her melphalan (Alkeran). Since I had been through the transplant process, I was able to answer many of her questions.

What struck me during my conversation with this patient was how little she had been told about the details of the transplant process. And she did not appear to have done much research on her own. I gave her advice about how to get through the fatigue, the importance of staying active, and the best way to organize the many medications she would be given post-transplant. I also emphasized the need to suck on ice chips for a significant time after the melphalan infusion to prevent mouth sores.

Anyone who has been through a stem cell transplant knows it is an anxious time. It appeared to me that being able to talk with someone who had been through the process, and appeared to be fully recovered and able live a relatively normal life, helped alleviate some of her concerns. Her daughter was with her, and she also appeared to welcome the information.

It was equally important that I was able to talk at some length with several of the infusion room nurses. What we as patients may not realize is that nurses see only a small slice of the multiple myeloma experience. The nurses were very interested to hear how we patients deal with side effects that we suffer once we are home, how we make decisions on which treatments to pursue, and what it is like to interact with our doctors.

I am excited about participating in this program. Even with my limited efforts so far, it has been so rewarding. I get to see the impact immediately.

Giving back is truly a gift to the giver.

Andrew Gordon is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of his 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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5 Comments »

  • Susan Penley said:

    I've never spoken to another multiple myeloma patient. Am I unusual? I attend a weekly yoga class for cancer patients / survivors, but no one else has multiple myeloma.

  • Chris Taylor said:

    Well, I have been reading your column for many months, not only because you have multiple myeloma, but you have been an administrator as well. My husband is a high school principal, so he can relate to some of what you have written. WOW, to have a person to talk to, what would that be like. Three years I have been at this and have had to go through this without support. I have asked, but our rural area doesn't have a group, little less know anything about multiple myeloma. I wish I could be a part of your program and not feel like I am doing this all by myself. Please continue to do this for others, as I really think it would help them a ton. Thank you for caring and sharing your life with us, for some of us, these columns are all we get.

  • Don Hoke said:

    Andrew and I met in the Beacon forum a few years ago. We then met in person for lunch a few times, and now talk on the phone frequently. The subject is usually myeloma, but fitness, sports, politics, and just about any subject you can think of might come up. Andrew is a great mentor and, even more, I consider him a friend.

  • Nancy Shamanna said:

    Andrew, that is nice that your cancer centre has a mentoring program and that you are able to volunteer for that. It sounds like the volunteers are checked very thoroughly too. I remember getting a criminal record check before doing volunteering at my daughters' high school about 17 years ago also. Nice that they checked your own health as far as immunization was concerned.

    I first met another myeloma patient when a friend in anther group had a stem cell transplant in 2008. I had helped to proofread a book that he edited about a local park. We still work together on a local parks committee. Then Dilip and I met a woman with multiple myeloma when I was having Velcade infusions in 2009. Considering that about 100 different treatments can be given to cancer patients, it was a coincidence that she was sitting in the chair right next to me. I ended up seeing her regularly for a number of years, and I met a number of other patients through her. I find it helpful to know other myeloma patients and caregivers.

  • Lorraine Steinsberger said:

    I think it is awesome that you are a mentor. When I first learned I had to have a stem cell transplant, a co-worker said he knew someone who had been through the process and, after obtaining permission from this person, he put us in touch. It was so uplifting and helpful to hear from someone who had been through it. Since I had my transplant in 2014, the head of the pre-transplant team has asked twice if I would call someone who was preparing for a transplant and talk to them. I'm usually quite shy about talking to someone I don't know, but I agreed, took their phone numbers, and called. It was so rewarding to me to hear their anxiety disappear when they learned my age, heard about the transplant and my experiences with it, etc. I even followed up with them once they were out of the hospital and on the road to recovery. I think it's a wonderful idea to have a mentor program for multiple myeloma patients. Keep up the good work, stay healthy, and God bless you!