Pat’s Place: Public Figures Who Have Inspired Me Since My Multiple Myeloma Diagnosis
There are so many people who have inspired me since my diagnosis in April 2007. Some are public figures, and some work their magic in relative obscurity. All have played an important part in my ongoing battle against multiple myeloma.
I’ll write this week about the public figures, and next week I'll write about the many other people who have inspired me.
Like many of you, Geraldine Ferraro tops the list. She was the first celebrity survivor I ran across shortly after my diagnosis. The fact that she was still alive after eight years—and lived with such energy and grace—was inspirational to say the least.
She went on to live an active, productive life with myeloma for over 12 years before she passed away a couple of months ago. This added to the impact she had on me. And like a lot of you, I was so sorry to hear of her passing.
Canadian-born actress and celebrity Lisa Ray also ranks near the top of my list. Ms. Ray’s public battle against multiple myeloma didn’t draw much attention here in the states, but was big news internationally for the past two years.
Lisa Ray made her name as an Indian-Canadian “Bollywood” bombshell and model. Bright and well spoken, I think the fact that she was so young and strikingly beautiful when she was diagnosed with multiple myeloma in June of 2009 took the media and her fans by surprise.
To watch Ms. Ray transition from a sex symbol to an outspoken advocate for multiple myeloma research caught my attention. The transition was symbolized by her hair. Her long, flowing black hair was soon replaced by a short, post-transplant cut that represented her new normal life.
Lisa Ray is young, strong, still glamorous, and unafraid to share her story with the world. You go girl!
Most recently, The NBA’s Orlando Magic Senior Vice President, Pat Williams, joined the unfortunate list of multiple myeloma survivors. The 70 year old Williams went public with his sudden, unexpected diagnosis a few short months ago.
Mr. Williams’ “My Mission is Remission” campaign caught the attention of the main stream media, as well as other multiple myeloma survivors and caregivers.
Despite enduring severe back pain, he remains upbeat and positive about his future. He also plans to do all he can to help raise both money and awareness for the fight against multiple myeloma.
Shifting gears, there have been a number of high-profile myeloma experts I have had the privilege to meet over the past four years.
Dr. Robert Kyle with the Mayo Clinic comes to mind first. Often referred to as “the father of modern multiple myeloma specialists,” Dr. Kyle was one of the first myeloma docs to anticipate the potential of the new novel therapy agents, while still focusing on patient quality of life.
Dr. Brian Durie, from Cedars-Sinai Medical Center and the International Myeloma Foundations’s Medical Director, made an everlasting impression on me when he was kind enough to grant me an unscheduled, 15 minute patient consult and later spoke with me at an IMF Patient/Family Seminar just outside Minneapolis.
Dr. Durie suggested I delay a recommended stem cell transplant and continue using Revlimid (lenalidomide) maintenance therapy instead. This advice bought me 18 months of extra time before my myeloma returned recently.
Dr. Kenneth Anderson is one of the world’s foremost multiple myeloma experts. I met Dr. Anderson at a reception in New Orleans at an ASH conference in 2009.
Dr. Anderson is a quiet, understated gentleman—almost to a fault. He didn’t say more than ten words to me or others around me that night. My inspiration from Dr. Anderson appeared a short time later, when I was listening to him during one of those “new advances in multiple myeloma treatment” teleconferences a lot of these doctors do.
As I expected, Dr. Anderson covered the material in a measured, monotone fashion. But he left a lasting impression at the end of the teleconference when he became notably upbeat and excited about a number of new, experimental novel therapy agents that Dr. Anderson felt would revolutionize myeloma treatment in the not-so-distant future.
When Dr. Anderson sounds excited about something, you notice! I hung up the phone that day feeling optimistic about my future, anticipating the real chance of living a longer, better life. It doesn’t get much more inspirational than that!
Dr. Keith Stewart, a rising myeloma star with Mayo Clinic in Scottsdale, Arizona, also left a lasting, inspirational impression on me.
You can’t help but notice how enthusiastic and positive Dr. Stewart is about the future for multiple myeloma patients.
After listening to him speak at a large medical conference a few years back, I found myself sitting next to him the following day in the Marriot’s Hotel business center. Seems we were both printing out our airline boarding passes.
After exchanging small talk, I explained how I was currently a Mayo Clinic patient in Rochester, Minnesota, but I would soon be relocating to Tampa, Florida. I went on to mention how I would be four hours away from the Mayo Clinic in Jacksonville, Florida.
Not to get Dr. Stewart in trouble, but he stopped me mid-sentence. “Oh no, don’t do that!” Dr. Stewart remarked. “Moffitt Cancer Center in Tampa does a great job. Wouldn’t that be a lot closer to you than Mayo-Jacksonville?”
“Yes!” I replied. “Moffitt is only an hour or so from our new home.”
“Look up Dr. Melissa Alsina when you get there.” Dr. Stewart continued. “She does a great job.”
How inspiring! Here was a specialist who clearly had a patient’s interest at heart. Instead of pushing his own institution, Dr. Stewart suggested a much more convenient alternative—and recommended another specialist—all on the way out the door, headed to the airport.
By the way, I took Dr. Stewart’s advice and have been seeing Dr. Alsina ever since.
I could go on and on, but I should really stop here. Next week I will concentrate on a number of inspirational figures who have helped me “behind the scenes.”
Feel good and keep smiling! Pat
If you are interested in writing a regular column to be published on The Myeloma Beacon, please contact the Beacon team at .
Pat's columns are always inspiring..In February I met Dr.Shaji Kumar a Mayo myeloma specialist at a MMF seminar in Los Angeles.I had inquired at the registration desk if he was available.I was in formed that he wasn't at the present time..A few minutes later he sought he out in the crowd and went over my tests with me. What a privilege to have a consult with an expert, considering I live in the hamlet of Golden Valley AZ. ( near Kingman ) where most think Multiple Myeloma is many Melanomas. ( little humor,very little ).Then at the end of the conference I met Dr.Keith Stewart of Mayo AZ. He was very helpful and explained trisomes to me.
Great article series. Thank you, Pat!
Thanks for pointing out some of the folks whom have motivated you along the way.
I just watched an exciting internet video featuring Dr. Durie, Dr. Anderson, Lisa Ray and others from this week's International Myeloma Workshop in Paris. I'd encourage MM patients and caregivers, after they've gotten today's myeloma updates from the Beacon, to hop over to the IMF website to check it out.
I've gotten a lot of my nuts-and-bolts information from your invaluable posts and websites these last few years. For that, I will always be grateful!
YOU feel good & keep smiling!
Sean
My comment was accidentally posted too soon, sorry..
In March, I was at a seminar in Scottsdale AZ and I met Dr.Kyle from Mayo and Dr.Shah from M.D.Anderson..I sat with Dr.Kyle and he was great.In the afternoon I spent lunch and the remainder of the conference with Dr. Shah ( lucky me ).The bottom line is I recommend Myeloma seminars to all, its a treasure trove of info from the best in the field..All were approachable and eager to help. Also I would like to point out that clinical trials for us is a must.I am lucky to be in one at the NIH in Bethesda MD.I have one of the world's best Dr. Ola Landgren and his capable staff, particularly Maryann Yancey R.N. They made and are making this journey very palatable to say the least.
My thanks to Pat and the Myeloma Beacon for the inspiring articles and wish all the best..Ralph
Pat, The generosity with which you share your research, and especially the manor in which you share your opinions,is so greatly appreciated. Reading your blog and your work in the Beacon has had an often much needed positive effect on how I relate to this disease. Again, thanks for taking the rest of us along on your "ride". Joe
Ralph-
Your experience should remind all of us how important it is to get out and become educated about our cancer! There are some really smart people trying to figure this thing out. Speaking with them is always inspirational and helpful for me. And thanks for reading! Glad I can help- Pat
Cool, Sean! I didn't realize Ms Ray would be attending... I will access video this evening- Pat
Pat you are someone who Inspires me.
I have learnt so much from reading your blog and column,and has had a positive effect on how I cope with my disease.
Keep up the good work.
Oze Shaz
Thanks so much, Joe and Sharon! Your kind words made my day! Pat
Pat,Arnie:
I had an autologous stem cell transplant March 11, 2011. My IGG level back in August of 2010 was 3251. It is now 943. My M-spike went from 2.7 to 0.6. My free kappa lt chains went from 594.66 to 3.59. My egfr was 59 and now is at 74, but as of now it is normal. My LDH went from 130 to 267 but now is back to normal. I would like to know if these numbers will continue to improve. My main worry is the M-spike and any potential kidney problems. My Doctor considers me having a very good partial response which he considers it to be as good as a complete response. I have had a good solid few days starting from 4/27/11 till now and have actually gained a pound after losing a total of 22 pounds. I still get fatigued and tired quickly but it is getting better. I am starting to get some facial hair but my head is still bald. Nausea seems to have subsided for now. Hopefully I am starting to get over this hump and moving in a positive direction. I won’t know till March if I will need a second transplant or decide to go on Revlimed therapy or some other maintenance therapy. During my transplant and Melphalan chemo I went through all the side effects. (Nausea, diarrhea, mouth sores etc.) I also had to get a few blood and platelet transfusions. Because of the mouth sores I was pretty much not able to eat for 3 weeks. It started off okay but once those side effects kicked in it was not fun. But hey you do what you have to do to get through it. Having a good support team in the form of family, friends and faith helped me a great deal and is very much needed in ones recovery process. Everybody’s process is different from what I am reading on other post. This just happens to be my experience so far. The Myeloma Beacon is great source of inspiration and a great resource for MM patients. Thank you.
Nelson
Thanks for sharing your story with us, Nelson! Sounds scary to a guy who is going to be going through what you did five weeks from now...
Did you suck on a lot of ice like everyone advises and still got the soars, anyway? At least you are through the worst of it. Want to trade? Hope your numbers are good and stay low for a long, long time-Pat
Pat-
Great list- thanks. I want to mention an mmer who is also worthy- Sam Walton. Urban legend has it that it was Sam that spent the money to start Barlogie at UAMS.
I read somewhere that Spock's father (don't know his real name) also died of mm but I don't consider that inspirational. Although I am inspired by Star Trek the show, but that's another story.
David Emerson
David-
I believe a lot of famous or notable people have died from myeloma over the years. No one paid much attention. More awareness now, I think, thanks to sites like this one! Pat
Pat,
I sucked on a lot of ice and drank a lot of cold water. I also did a lot of baking soda rinses as advised to do so by the staff. Follow the doctors and nurses orders. They know what they are talking about. I got the sores after the high dose chemo treatment with melphalan before the transplant. Thanks for the support. I just hope I continue to improve and don't have to have a second transplant in June.They took out enough stem cells the first time for 2 transplants if needed. Just be strong and have faith. You will be ok.
Thanks,
Nelson
Nelson-
I hope you continue to improve and don't need a second transplant, too- Pat
Two other figures who are known only to baseball fans. One is Mel Stottlemyre who was first a pitcher for the Yankees in the 1960's and later a famous pitching coach for both the Yankees and the Mets. Mel underwent a transplant over 10 years ago. His desciption in his autobiography is a clear account of what a transplant was like 10 years ago. The other is Don Baylor, whose baseball resume is quite impressive. He was an MVP with the Angels in 1979. He was a successful manager of the Rockes and the Cubs. Currently, he is one of the best hitting coaches in the game. He is with the Diamondbacks. He was diagnosed in 2003.
You and I both. I am feeling better each and every day.
Richard-
I didn't realize Don Baylor is a survivor... Still working as a major league coach. That is inspirational! Pat
Nelson-
So glad you are feeling better! Thanks for reading- Pat
What can I do to make my modest home ready for what's to come? I can barely make it to the bathroom, fall going up one step etc. I am overwhelmed with the whole idea of using a wheelchair, etc.
I am taking 3-4 hydrocodone a day. Is this dangerous? I am a complete newbie to chat rooms, diagnosis, so am looking for sights to educate myself.
I am a teacher. The tumor on my sacrum has taken away my ability to walk without falling, extreme pain, etc. Will I be able to walk again? I would love stories that describe rebounding. The idea of not teaching again is the most painful thing to me right now.
Patty
Patty-
I'm so glad you are reaching out! You might want to play around with the Forum section here at The Myeloma Beacon. Click on the Forum button at the top of the page.
I'm not a doctor, but my docs say the painkillers aren't dangerous. Have you called the IMF hotline? Go to http://www.myeloma.org and get the toll-free phone number. Their counselors are excellent!
I'm sorry you are in so much pain! Don't give up on teaching yet... Give everything a chance to play-out. Good luck!