Pat’s Place: Thank You, Team Myeloma!
As I prepared to write my weekly column, I must admit my mind drew a blank! Why? Sheer exhaustion, I think.
As most of you know, I underwent an autologous stem cell transplant this summer. Two weeks ago, I shared how the transplant had actually made my multiple myeloma worse.
Earlier this week, I learned that surgery will be required to remove an area of melanoma on my left ear. That’s right — melanoma — as in skin cancer.
I need a vacation!
Instead, I’m heading out to attend and speak at meetings in Chicago; Columbia, South Carolina; and St. Cloud, Minnesota. Now that’s a lot of frequent flyer miles!
And do you know what? I wouldn’t have it any other way.
I think staying busy and helping my fellow multiple myeloma patients and caregivers is the only way I can find a way to get up in the morning.
Boy, mornings are tough for me lately. By then, my pain meds have worn off, leaving me stiff and sore. My peripheral neuropathy is always the worst in the morning. And I’m always so groggy. I find it very difficult to wake up these days.
But somehow I find the courage to roll to my left and slowly ease myself up and out of bed.
A few pills later, I feed the dog and our cats and help Pattie get ready for work.
Why not just stay in bed? What is so important that I feel the need to get up and drag myself into our home office before 8 am? You are!
I know there are important emails to answer, another book to finish, and a column to write. Helping you helps me keep going. Your kind words and prayers inspire me to hopefully find a way to inspire you.
We’re a team, you and I. Let’s call ourselves “Team Myeloma.”
So when it’s time to catch that early morning hotel shuttle to the airport this weekend, knowing that I’m making a difference will make it so much easier to get going.
Without you — my teammates — I’m not sure I could make it another day. But with your support, I feel like nothing can stop me, including my multiple myeloma. And for that I thank you!
Feel good and keep smiling!
Pat Killingsworth is a multiple myeloma patient and columnist at The Myeloma Beacon.
If you are interested in writing a regular column to be published at The Myeloma Beacon, please contact the Beacon team at .
Your columns always give me hope and makes me smile. Thank you for getting out of bed each day and thinking of all of us! Enjoy your vacation!!
Love, Carol
Pat, you are amazing!! You put others' needs first...thank you for all you do for the rest of us.
Pat, Thanks, as always, for your uplifting and inspiring words. You are terrific!
Wow! How do you get to maintain your disability with all the traveling and work you do? From reading your post I can see it's not easy for you but if you can travel and meet with groups it seems like you could be working for money and relieving the hit on the tax money. Does Social Security ever call and push you on these things?
Good luck with the surgery and your new treatment regime. I think I speak for all when I say we're pulling for you.
Pat, I read your column to my husband, Troy, who has MM. He doesn't want to join a support group so hearing from you and the comments from others is both helpful and hopeful to both of us. Thank you for putting such a high priority on helping others.
The Power of the spirit is amazing!!!! Your gift to serve others is a blessing to all of us who follow you online. I am in a rural area and the only support group is over a hour away located downtown in the city. Right now it would be one more thing to add to our theme song " On the Road Again." I thank you for all your support and all you do for me. You and Pattie are truly a blessing. Your teammate Mary Louise
I enjoy your posts and am proud to be part of Team Myeloma. Let me know when the t-shirts come in!
What a nice article! Thanks Pat.
Thanks, everyone! Sorry I couldn't respond more quickly. Just have a moment here at Tampa airport on my way to Chicago. Three quick days visiting my family, then off to speak to support groups in South Carolina and Minnesota.
Jesse had some questions about my social security disability. First, SSDI isn't tax payer money. It's my SS that was deducted from pay over 35 years. No drain on the Federal coffers. I do much of this as a volunteer. If and when I am paid as a freelance writer, I report that, of course. But after expenses, not much left I'm afraid. But I am more than willing to work if someone will hire me, allowing for 5-10 hours of missed work each week for apts and therapy. Oh, and by the way--what do I tell the interviewer--don't worry about the time and money you spend training me... I might still be alive in two years!
Pat: I admire and am amazed at your ability to get the job done against all odds! You are cut from amazing cloth. It would be an honor to join the team. Please take care of yourself and travel safely.
Thanks from another MM patient who appreciates all your effort. Your many reviews of therapy options has been very helpful to me.
Ditto, on everything said. It's the support and info that is shared here and the myeloma list serve,that has helped me stay positive and informed. Thank you,Pat!
And yes, Go team Myeloma!
Best thoughts to you ,
Christina
Hi Pat - you're an inspiration - keep going! Those of us newly diagnosed, and those still in the weeds need someone like you to lead the way and show us the "normal" in "the new normal." I appreciate how hard it is to get up some mornings (dx 8.11, everything seems new and hard) and those particularly tough ones I turn to Myeloma Beacon and look for something hopeful to help me put one foot on the floor. Thanks for being the reason I can do it some days...
I think the whole website is quite amazing and informative. Thanks for all the great articles and posts....I learn something new every day! I think that because you are so conscientious about everything, Pat, that you will always do well...just try not to tire yourself out, since one does lose a lot of energy during the SCT (it gradually returns, but it's OK to rest )
Pat you are amazing! Your perseverance and strength are admired by all. I am happy to be part of the team. Safe travel. Thank you for all your support.
Pat, if we are the team, you are the coach!!! And what an inspirational one! Hope you continue to feel well enough to do all you do. Rex and Kay
Best regards for travel, Pat!! I have recently relapsed and can relate a bit. I am a professional musician and fear the neuropathy. Just hearing you sharing your struggles and all of TEAM MYELOMA makes me stronger. Please keep us informed how things are going. We are ALL praying for a cure!! In the meantime I wish all of us GREAT STRENGTH and hope we enjoy each moment!
As I sit here with my Dad in the hospital and watch him suffer, I'm so angry at this disease! I also question why such bad things happen to such good people?!?
Anyways, I just wanted to say thank you for your words of encouragement and inspiration!
I just arrived in Chicago. Late flight with weather delay. Staying with my brother and heading-out to visit my parents in Rockford, Illinois tomorrow am. I finally get their internet to work and I open this page and WOW! Talk about helping make it all worthwhile! I am truly touched...
Dearest Lindsey, so sorry you and your father are going through such a painful time. I want to bounce all of the kind words I have been receiving today right back at you! Please know our thoughts and prayers are with you tonight.
Sorry to hear of the melanoma; it should serve as a reminder to all cancer patients that if you have one primary then you are at increased risk for a second cancer and should continue screening such as regular colonoscopy, skin exam, mammograms, PSA (debatable now) etc.
hopefully, what I say next is not new to you. The commonest cause of death for myeloma patients is infection. Hematologists/oncologists often neglect to discuss that fact (at least they did with me but being a physician I looked after it myself) and how to prevent infection. A pneumovax injection early on and yearly flu shots are wise. If flying, 80% of the air is recirculated and with cold and flu season upon us it is wise to wear an appropriate mask during the flight. As well, when I travel I carry a thermometer and a broad spectrum antibiotic and will start it if febrile or ill. You have mentioned going back on RVD which along with having myeloma puts you at risk for DVT; if flying like you do it is recommended to wear compression socks, do ankle and calf exercises, walk around frequently as well as drink 1 liter of water every 4-5 hours to maintain hydration. Continuing with the aspirin or an anticoagulant is necessary. Myeloma is incurable but taking steps to reduce complications is important. When I was diagnosed with Stage 3 with multiple fractures the chief of hematology at a university center was concerned from his experience that I wouldn't make it to Christmas; that was Christmas 1991. No two patients are the same and you should not compare yourself to another, but good luck.
Hey Jesse, your suggestion that Pat should be working for money to relieve the hit on the tax money, is completely out of line, and you should apologize to him.
I went back to work soon after the SCT, because I own the company, and I can afford to come and go as I please, I had installed one of those adjustable beds in my office, so I can take a nap anytime I feel like it, and believe me, some of those naps can last for 4-5 hours, now, what employer would allow you to do that??
Anyway, Great post bond007, since 1991 huh, I could live with that, may I ask you how old were you when you were first diagnosed??
Pat, for bond007, that's 20+ years
Sam,, I was 38 when first diagnosed with twin daughters in grade 4 and a son in grade 2; the girls will be 31 in February so to say that I am fortunate is an understatement;
Special thanks for the wonderful tips and advice, doctor! I think we need to be reminded more often about the risks of infection. Considering my compromised immune system over the years, it is surprising this is my first bout with melanoma.
Congrats on your ten+ years since diagnosis! Best of luck to you, too.
bond007, I was diagnosed 2 years ago (was 52 years old) with a solitary plasmacytoma in the lower back (the pain was suicidal).
With clean bone marrow biopsy, it was treated with radiation, and after 3 months, my doctor told me "You're not a cancer patient anymore, so get the hell out of here"
But 3 months later, a blood test shows elevated protein level and I was back on the saddle.
Again, with clean bone marrow biopsy, I started Velcade+RVD+DEX for 4 months, followed by an SCT, but everything was back to normal right after the 2nd week of treatment, and my doctor's comment was that I responded too well to the treatment.
Now, 9 months later, I'm on RVD 10mg, and so far so good.
It is 20 years! WOW! Inspirational!
Sam,
Thanks for that strong comeback to Jesse.
It was warranted.
Hey, I never said anything mean or nasty to Pat. I was just wondering about it. I've been through an SCT and am now on TVD and I'm working full time and I know others are as well. I never really thought about going on disability. I just was curious about how they work. I can understand being on disability for a few months after SCT but I was wondering if they start to give you a hard time after awhile as I think most people could work during maintenance therapy.
So relax.
Jesse-
I understood your question. No hard feelings here. I was in bad shape when approved for SSDI. Unfortunately, it isn't a very nimble system. You can't just switch it on and off. If I had a job to go back to, it is possible I may have been able to do without. But I have had several set-backs which make me glad I am still able to collect. Glad you are doing well enough to work. Good for you! I just haven't been so lucky- Pat
Really, there is nothing very easy about being sick with myeloma, going through the treatments, and trying to re-establish one's life later. We do what we can to keep going. For some people, work is still paid, and for other's it is volunteer, but it is still a contribution to society as a whole. I have met some very admirable people working in the non-profit sector, before, and now in the myeloma field. I was lucky to keep working part time with my husband, but all other activities dropped away for about a year when I was going thru all this 'stuff'. It's only recently that I could get back to my interest groups from a couple of years ago..choir, needlework guild, myeloma support group, environmental group and more. In fact am busier than ever now and have to try to 'pace' myself. BEST WISHES to you all of you in your very personal journeys.
Thanks for reading, Nancy! Very wise indeed...
bond007,
What's your secret?? Any special diet??? Anything?? I'm sure everyone on this board likes to know.
Jeff, at this stage, I wouldn't get on a plane unless it's an absolute emergency, I'm sure you know that our immune system is hanging by its finger nails, fighting a war with little ammunition, so any stress, physical or mental, a bad cold, or any minor infection, would be a major distraction for these guys, it would be like pulling the soldiers away from the front lines in the middle of the battle, and send them to clean the general's office.
I think I just found the topic for next week's column: Do you "play it safe" and stay close to home, or get out and live? I guess I don't have an opinion at this point. Both make sense to me!
Sam, there are no secrets, just good fortune; I have not had a stem cell transplant and will not be getting one due to extensive exposure to melphalan between 1991 and 1998. Except for a 5 year period when I was on pamidronate [Aredia] only, I have been on one thing or another for the 20+ years. I relapsed 3 years ago but as everything else has been atypical with my course it was as a partial light chain escape which presented with a new light chain kappa myeloma as well as my original IgA and each one requires a different treatment; RVD handles both where as revlimid 25mg/dex 40 mg. didn't touch the kappa light chains only the IgA.
Doctors really don't know what is happening in us when things are going well and they can't explain my course.
Of significance is the fact that my cytogenetics are normal and what my hematologist finds the most remarkable is what my body to date can handle; despite 20 years of drugs including the past 2 years of RVD, my CBC and renal function are always normal.
From my own perspective, I believe that avoiding infection is important and that minimizing stress benefits the immune system. We are all different, not just in our disease but also our personalities, support systems and financial concerns. In 1991, I had in place personal disability insurance that has been adequate over the years. In Canada the health care system is far from perfect with imbalances between the provinces, but in Ontario revlimid, velcade and autologous tranplants are not a cost to the patient. Good luck ; as Pat has said in the past it is important to educate yourself and be proactive and not just leave decisions to the doctors.
They have 150 patients to look after; you have just one.
Bond 007. Bond is a good nickname for somebody who has made it 20 years with this disease!
I saw my transplant oncologist a few weeks ago. To make our appointment very meaningful, I took a day off work and drove 3 hours each way the week prior to have them draw my blood. This way we could be looking at current myeloma numbers. So I go back down the next week and they can't find them. What a waste! Of course I have to keep my cool and garner as much info as possible from the appointment but next time they will email me the results and I will bring them to my next appointment because after all, "They have 150 patients to look after; I have just one" I like that line--thanks.
Pat--on your next topic regarding playing it safe or going outside to play...
I'm 8 weeks post SCT. I have 2 children still at home, so when they bring home a cold should I go outside and play it safe? The doghouse probably has fewer germs than inside the home with sick kids.
I picked up my daughters' cold last night...all of my IG's are in the low category. WBC and neutrafils are fine. We'll see how long this cold lasts!
Hey Stan-
How aggravating! I only drive an hour each way, and if that happened to me I don't think I could keep my cool...
About the colds... Look at the bright side--your immune system should improve quickly as you are exposed to so many germs. I have been so fortunate not to have gotten sick yet. My secret: No "carriers" (kids) at home! Just be extra careful with hand washing. Might even wear a mask sometimes... Good luck!
bond007, When I was first diagnosed, a bunch of doctors and some students from Harvard medical school came to my room, and one doctor said something to me that I'll never forget, "If you have to have cancer, this is the cancer to have, because it's treatable", and now I know what he meant.
But the funny thing is, when I was going through radiation treatment, the radiation doctor kept telling me that they weren't shooting for a remission but for a cure.
As you said, Doctors don't know exactly what's going on with us, but again, if they knew, maybe they would have found a cure.
Good luck, and looking forward to hearing from you in the next 20 years.