Riding The Wave – Multiple Myeloma

“Life isn’t about waiting for the storm to pass. Its about learning to dance in the rain!” – Unknown

I’ve just returned from my “speaking engagement” in Little Rock. A day of travel from Sacramento, nothing new there. There still isn’t a direct flight even when a travel agent takes care of it! A day of travel home and in between was a packed day of activity for me.

It started with a small caregiver support group on the Myeloma hospital inpatient wing. This was difficult for me as I knew that these caregiver’s loved ones were in dire straights if they are admitted to the hospital. I wasn’t so sure that a happy “Lori Story” would exactly be what these folks needed to hear. But the Social Worker assured me it was exactly what they needed to hear. Hope. Oh-kay. It went well and afterwards I approached one woman who was clearly experiencing the rawness of the crisis she found herself in. I was relieved that she thanked me for sharing my story and I asked her to tell me what she was confronting with her husband. Multiple compression fractures up and down his spine, unable to move, and deep depression. I wished I had had time to visit with her more and meet her husband, but we had another appointment. I was confident she was in good hands as there were other caregivers rallying around her. The camaraderie in a place like Little Rock for an otherwise “orphan disease” is indescribable. And that doesn’t even begin to articulate it if you haven’t experienced it first hand. Complete strangers all have one thing in common there – Myeloma… and a story. Almost all Myeloma patients have a dramatic story of how they learned they had this nasty beast of a disease. Very few have a physician who decided to run a specialized test to uncover it based on some benign symptoms being expressed by their patient. So often when you meet someone with Myeloma, the first thing you share, is how they found your Myeloma.

Next was an interview with the communication dept. They decided they wanted to do a “story” about the program I was involved in and my blog and my experience at Little Rock. Its suppose to get up on the main UAMS website and I’ll link it up when it comes to fruition.

Back to the hotel for a little rest up and refreshen and then back to UAMS for the big event, the MIRT MEET. Dr. Barlogie holds this get together every few months as best he can with his busy schedule. He briefs patients and family members about the latest research findings, things they are working on and then opens it up for a Q&A, which is the exciting part. He is often late due to patient obligations (which as patient/caregivers – you totally understand – it could be you that he is spending whatever necessary time is needed!), and so I was the “warm up act”. Ultimately he was unable to come, but sent his Physician Assistant who was amazing. Question after question he fielded incredibly well and it was absolutely fascinating.

On a technical note for you Myeloma folks. UAMS no longer views the chromosome deletion abnormality as an indicator of high risk. In fact… drum roll… they no longer consider cytogenic testing of any real value in the treatment, outcome or risk factors for MM! WOW! This is HUGE! They have been doing gene array diagnostics on MM patients for many years. They were the first. That is all they are interested in now in determining high or low risk factors in MM.

Ok, back to me now! Right? So I gave my talk. About 50 people showed up early to hear the warm up act. That was heartening. I had a podium and a microphone to hide behind in the beautiful new cancer center conference room. I didn’t eat much, I was nervous. It went really well. I got emotional in a new place that sort of surprised me, but I got through it OK and the men didn’t slink in their chairs too much. Then they opened it up for a Q&A which was fun. One guy has been coming to LR for 17 years! I applauded. I have met him before but had forgotten, as mostly I had talked with his wife. I was thinking we should have pins for each year of our survival. Wouldn’t that be cool? Walking around LR and seeing patients with a 1… 5, 10, 15, 20, 25 year pin on their lapel? Maybe in Myeloma maroon and then a white border once they hit the “cure” mark. I’m going to suggest it! haha

One of the personal highlights was Sean Murray, diagnosed and treated during the same timeframe as Dave, though we missed each other. I learned of him through his fabulous articles at The Myeloma Beacon. He has a blog called Myeloma Youreloma. He’s a terrific writer with a positive attitude that I just love. I had shot him a quick email that I would be there, hoping that just maybe he might be able to make it as he is closer to LR. He just happened to be there for his check up. The universe works in miraculous ways. I have seen his handsome mug on the Beacon for awhile and it was really terrific to look up and see him at the back of the room giving me a nod of support.

During the day I had stopped by the new infusion center and was warmly greeted at the reception area where the flyer about my talk was prominently displayed. As I milled around a patient asked me what I was speaking about. So we chatted. She lives in LR and had relapsed. She received an aggressive treatment known as the “Super Beam”. It is nothing you want to have to go through. I smiled and said, “May I touch you? You did Super Beam and YOU LOOK INCREDIBLE!” She laughed and thanked me. Turns out that our husband’s probably know each other. Both are telecom/satellite engineers. Small world. I asked her how she was “living with Myeloma?” In my mind, it is the last hurdle you have to overcome. After treatment, after remission, how do you deal with the nagging knowledge that historically, at the moment, it comes back? And since hers had, I was curious on how she copes with this hurdle. She said that different from the last time, she no longer reads the diagnostic reports. They are not written for a patient but for a doctor. She would read too much into them – dissect them. Now she just lets her doctor tell her how she’s doing and she finds it much better for her psyche. I actually agree with her on that. Once you turn your treatment over to the folks at MIRT, you really can let them do their job and while you remain proactive you don’t have to bypass them in the understanding of your overall condition and opportunity for a successful outcome. She no longer worries about it and truly works to live her life and enjoy all that she can. Her doctors will tell her if there is a problem and she will deal with it when it arises. I’m impressed.

Thank you all for your support behind the scenes of this project I have been honored to participate in. It was exactly the kind of thing I was hoping for. Giving back in a meaningful way. I hope that I will have many more opportunities to share our story. Maybe someday I’ll let Dave hear it!

Tags: caregivers, Little Rock, MIRT, MIRT MEET, sean murray, speaking engagement, UAMS