Myeloma Dispatches: Worst Birthday Ever … Or Not?
February 9, 2016 was supposed to be a special birthday for me. It marked the fifth anniversary of my autologous stem cell transplant. I had outlived my initial prognosis of four years, which my oncologist had given me at diagnosis (my myeloma is considered high-risk). I had great plans for the day: a mellow cross-country ski with a friend, and coffee afterward with more friends.
However, my wonderful plans ended with me being sidetracked by my disease.
Let’s back up a bit.
I enjoyed a two-year remission after the stem cell transplant. During that period, the port that was inserted before my transplant was removed by my request. That clunky bump under my chest skin was a reminder of being very ill. When the port was pulled, I experienced hope for a myeloma-free future.
Then I relapsed. Over the past three years, I have traveled the myeloma journey through different treatment lines.
At first, the missing port was not an issue. I had great peripheral veins, and some of the medications were subcutaneous, such as Velcade (bortezomib), and others were oral, such as Pomalyst (pomalidomide).
The tipping point for my veins was the Kyprolis (carfilzomib) treatment I underwent. For almost a year, I received intravenous infusions, twice a week, in a three-week-on, one-week-off treatment cycle. In addition to worsening side effects, I and my veins protested. My big, beautiful veins retreated, rolled, or collapsed with repetitive intravenous sticks. Anxiety became a frequent companion of mine with each treatment.
At the start of last month, I was once again confronting the chronicity of this disease after a much needed treatment vacation. My immunoglobulin A (IgA) was at a new high, more than 11 times the normal level, and I was anemic and immunosuppressed. As a nurse, I could not deny the data: I still have multiple myeloma.
My husband and I consulted with my myeloma expert. He understands how I struggle to balance quality of life issues with treatment. He recommended the newly approved monoclonal antibody Empliciti (elotuzumab) in combination with Revlimid (lenalidomide) and dexamethasone (Decadron). He also said the side effects might be milder than with other myeloma drugs.
So I began the new treatment at my cancer center. I started out with a one-hour infusion of Benadryl (diphenhydramine, an antihistamine), Pepcid (famotidine), and dexamethasone, plus oral Tylenol (acetaminophen / paracetamol). All these drugs were given to prevent infusion reactions. I then received the Empliciti infusion over a long period of time (five hours) to discourage untoward reaction.
Once again, my veins protested, and the nurse observed my anxiety increasing with every additional attempt to insert the infusion.
Sometime during that first long day, the oncology nurses held a mini intervention with me and said, “Maureen, you have been receiving infusions for your multiple myeloma for over two years. You and your veins are rebelling. It is time to have a port re-inserted.”
Even though the re-insertion of a port felt like a retreat to me, I listened, and followed up with a number of questions.
Will the procedure delay the next treatment? Where will it be done? What type of anesthesia will be used? How long is the recovery? Can I still swim with a port?
The nurses answered all my questions. I would still receive my next infusion on time. I could have the procedure done at my local hospital, and I would not have to have general anesthesia. Recovery for exercise would just be a few days, and I could swim within two weeks.
Reluctantly, I agreed to the procedure, chose the surgeon, and departed thinking I had a least a week to get used to the idea of having a port again.
On February 8, the day before my transplant birthday, I received a phone call late in the afternoon. I was expected to be at the hospital at 8:30 a.m. the following morning for the re-insertion of the port.
What? I wanted to celebrate my transplant birthday. And, adding insult to injury, there was to be no coffee before the procedure. No breakfast either. What a disappointment. No celebration on February 9. I was not brave or graceful that evening. I was resentful and not much fun to be with.
My youngest son made sure I got to the hospital on time, and, with an angry heart, I followed all the rules.
After all my angst, the procedure went smoothly. I was a happy drunk with Versed (midazolam) and fentanyl. The nurses reported that I stopped talking mid-sentence with a smile on my face. The surgeon has inserted thousands of ports, and the procedure was completed without a hitch.
All the oncology nurses’ promises came true; 48 hours later, the port was accessed painlessly for my second long Empliciti infusion. I was more mobile with both hands free and much less anxious.
The same nurse who assisted with the port placement came to the cancer center to learn how to access ports. So I encouraged him to practice on me. Yes, even as a patient, it is important to me to be a teacher and a nurse.
I was definitely sore for 48 hours – so no spinning or cross country skiing for me. Ten days later, the surgeon gave me permission to swim. The port remains lumpy, with colorful bruises around the insertion area. No strapless dresses for now. (Oh wait; I never wear strapless dresses anyway.)
The day after the port procedure, I read of Pat Killingworth’s death. The news hit me like a punch in my gut. I counted on his optimism, his courage to reflect on difficult topics. His last column, “Dare I Dream Again?” could be a motto for any multiple myeloma patient.
Then reality struck me. I did not have the worst birthday ever because I am alive. To honor Pat’s life, I want to appreciate my aliveness and stop whining. The port is not a retreat. It’s another ally in my journey to stay active, stay creative, and stay alive.
And the story of the port and the “worst ever” birthday has another, much better ending.
The following Saturday, my friends and I participated in a snow shoe race in Redstone, Colorado. The day was glorious, sunny with a cloudless blue sky. The course followed the Crystal River into the woods, contrasting white unmarked snow with the deep red stone bluffs. At the finish, I was again last, my new favorite position. It didn’t matter. I experienced several moments of piercing joy at the wonder of the outdoors. Being outside with friends – what could be better?
At lunch, friends surprised me with a tiara and five balloons to celebrate the five-year birthday. For me, this stem cell birthday became a proud celebration of a tough journey. I celebrated being alive surrounded by the love of my family and friends.
Maureen Nuckols is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of her previously published columns here.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
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Prayers are with you. Encouragement not needed; it appears you've got that covered. You have a wonderful way of expressing your journey in this column.
Great column!
Thanks for another moving and supportive column, Maureen. I'm a similar high-risk, post-autologous transplant (September 2013) myeloma patient. It is indeed a special club we find ourselves in! My wife finds it difficult to read more about the disease, and I understand this. Whereas I find comfort in reading articles likes yours that relay first hand the journey we go through and our constant battles with the disease and treatment side effects.
I wish you all the very best and I look forward to your next column.
Take care,
Neal
The more we know about myeloma, the better equipped we are to deal with all the choices of treatments and their ups and downs. Thanks for your openness.
I am a youngin, only 18 months post transplant. I never had an implanted port. I am constantly encouraged by your normal anger shortly followed by very positive attitude. God bless you and your friends for making your fifth special.
"I was again last, my new favorite position." That line had me laughing. What an awesome way to celebrate your 5th birthday. Thank you for sharing how you are living. And you are really living! Inspiring.
I enjoyed your article. Your words were very uplifting. God Bless you and good luck on your continued journey.
Hi Maureen,
At first I was discouraged that myeloma was taking you to a dark place on your birthday. And then:
"Then reality struck me. I did not have the worst birthday ever because I am alive. To honor Pat’s life, I want to appreciate my aliveness and stop whining. The port is not a retreat. It’s another ally in my journey to stay active, stay creative, and stay alive."
Happy belated birthday and "Keep Smiling" – I know you just made Pat smile.
Hello, Kathy, Lynda, Eric and Neal. Your comments were not only timed right but encouraging. Yesterday, I spent the entire day in the infusion chair receiving the new drug Empliciti. Yes, Lynda, I still need encouraging for this chronic disease.
This monthly column gives me time to reflect and then share with the myeloma community. I am finding the process heartful and hopeful.
Thank you for your kind words.
Maureen
Maureen,
Last? You were not last! You will never be last. You're out there calculating risks and taking them, as we all do every day. Last is for the folks who have no desire or ability to roll and bounce up when they they fall. Your favorite position is leading the pack. Showing and teaching the rest of us how to do it. Thanks.
Maureen, I also am honoring Pat by feeling grateful for every day. I can't believe he's gone and miss him terribly. I hope you and your port are becoming very good buddies. I had my port (my best friend) for six and a half years. It was removed a few months ago as it had just stopped working. Best wishes
Maureen, thank you for sharing your stories of your journey through this cancer landscape. Your strength and positive attitude are a shining example for me to admire and attempt to follow. I share these postings with my own children so they too can see what great, impressive trunks grow on their family tree. I love you.
Hi, Maureen! Loved your column. It definitely was a good birthday, after all, for you. Good reminder for me to not forget the bright side of life now. All the best.
Maureen, I've been reading the Beacon for a number of years now. I rarely posted anything, I just read some of the experiences that our fellow Myeloma Beacon members shared with the rest of us that had so much in common. Over the years when I did come to the the Beacon, it became a habit that I looked forward to reading the latest column from our beloved friend Pat Killingsworth. He was such an inspiration. I had the same feeling as you when I heard of his passing. Like someone kicked the breath out of me. I always felt like he was going to live long after most of us were gone to carry on making the survivors feel that there was hope. I will always miss him dearly, and I wish his loyal caregiver wife Patti all the best.
Maureen, I want to wish you a happy birthday, and also let you know that I have read a few of your columns, and I want to thank you for being such a brave soul with your words of encouragement. Thanks for an inspirational article. I believe that multiple myeloma is well on its way to being a treatable disease like so many others. We're all probably closer to a cure than we think. Thanks again for your column, and not just this one, I have read others of yours as well. God Bless!
Thanks for the informative yet personal column, Maureen. As the Scottish poet Robbie Burns wrote..
'The best laid plans of mice and men gang aft agley.' (i.e. our plans often do not work out)
I am glad that your transplant birthday plans got back on track and that you were able to finish a snowshoe race. I know what you mean about coming in last in a race. I was once last in a 10 mile race, many years ago. But the crowd cheered when I finally rounded the corner to the finish line! Am also doing the same cheering for you!
I am sorry your anniversary turned out so different from what you were expecting, Maureen. I am very glad, however, that you made the decision to get a port, and I hope that you respond well to the Empliciti-based treatment regimen, and that the response lasts a very long time.
I also want to echo what everyone else has said in thanking you for sharing your myeloma journey with us. There are so many aspects to this challenging disease, which makes it is so very helpful when you and all the other columnists here at the Beacon share your experiences.
I am very interested to hear more about how you do on elotuzumab. I hope it works for you and doesn't have many side effects.
Hello to Terry – I so appreciate that you connect with the anger component of what we face with this chronic disease. What comes next is often positive but not unless we are honest with the darker emotions.
Dear Beth – I am definitely embracing the last position, but this is a process and not always easy for my competitive spirit.
Craig – I am glad you could appreciate the transition from whining to acceptance. I do often need to whine first though. My model for writing was often Pat Killingsworth.
Dear Dottie – Thank you for the God bless, I always could use a blessing.
All of your comments buoyed me on a long infusion day, which is why there is a delay in my response to you.
Maureen
Dear Dave - Your words with the description of 'leading the pack with risk taking' meant a great deal. I still struggle with a competitive energy that does not appreciate the position of last.
Hello Katie – You captured what we both learned from Pat. How to be grateful for what we have today. Thanks for reminding me of that.
Dear Sylvia – How about we both remind each other to identify and celebrate the bright side?
Maureen
Wonderful column, Maureen!
I must say that I was a bit breathless at first, worrying that something awful was going to happen to you on your birthday. So happy everything worked out for you. My husband is trying to delay as long as possible having a port inserted, but recognizes that the day will eventually come. Reading of your successful port insertion helped ease his concern.
We too mourn the loss of Pat Killingworth and his eternal optimism. He remains an inspiration to us in my husband's journey with multiple myeloma.
Coincidentally, my husband began the same regimen as you – Revlimid, elotuzumab, and dexamethasone – in January 2016, and is now on the every-other-week infusion cycle. So far, so good. We wish you well in this next step of your myeloma journey.
Dear Nora, my younger and taller sister - What you wrote was so meaningful to me because your opinion matters a lot. I will keep writing about my own cancer landscape, and thanks for sharing my journey with love, Maureen
Dear John - I am so glad that we connected through the column. This is why I write, it truly helps me to cope. Also, to become a member of this honorable community. I believe we are all brave, by getting up each day and trying to live a good life with a chronic cancer as part of our world. Thank you.
Dear Nancy - I wait each month for your column because your observations of life will speak to me in a personal way. I am learning to accept being last with grace.
Maureen Nuckols
Hi Maureen,
Love your columns. You write what we're thinking
I too am IgA and we've had very similar treatments. July 2016, I will celebrate my 6 year stem cell transplant anniversary, so we are not too far apart in our treatments. I feel as you do regarding ports. My Hickman catheter wound up septically infected during my stem cell transplant, had to be removed via emergency bedside surgery, and I was terrified to have a PICC line put in and the possibility of another infection. But after weeks of harsh antibiotics to combat the Hickman infection, my veins shut down, so I agreed to a PICC (I was there for a month!).
I did have remission for almost 3 years (with maintenance Revlimid for 18 months of the 3 years). Out of remission, I restarted Revlimid + dex from October 2013 to October 2015, but eventually became somewhat refractory to Revlimid. I finally made the decision to switch to Kyprolis, as my IgA and M-protein was moving upwards and upwards. Long story short, I worry as you mention, how long it will be that I can do the Kyprolis infusions via my hand veins, and if I will eventually have to accept the port option again.
Sorry to hear Kyprolis stopped working well for you, and I hope your new treatments do the trick. Thanks for your great article Maureen!
Hello all. Since I am in treatment, I am slower in responses, sometimes due to fatigue. Yet your comments keep me going.
Hello Cheryl - Your comments are why I keep writing for our special community. It is powerful to connect through these columns.
Hello C.Snyder - I will be writing more about my experience with elotuzumab next month.
Hello Patty - So good to hear from someone who is on the same treatment regimen (although a month a head of me). Sounds like it is going well, but is it working?
Take care,
Maureen
Maureen,
You are SO right - any birthday is better than no birthday! Good luck on your new treatment. I've been on the same protocol (elotuzumab plus Revlimid, Velcade, and dexamethasone) since May 2014 and still in remission (without a transplant). I'm now in the maintenance phase. It's been an easy treatment for me, and I hope you have the same experience.
Thank you for keeping it real and sharing your experiences. So happy to hear you have passed your original 4-year prognosis. It gives great hope to the rest of us high-risk patients.
Dear Julie - Here's hoping the Kyprolis regimen continues to work and your peripheral veins hold out. Yes, I have totally made peace with my new port. I have been swimming several times with ease. Plus, with my weekly infusions, I now appreciate the reduced anxiety with the visit and increased mobility with hands free.
Dear Jan - I am intrigued that you are on a similar treatment, except I am not on Velcade. Also, so glad that you are in remission without a stem cell transplant. All our experiences are so unique with this crafty disease.
Maureen
I appreciate you sharing your experiences. My husband has had somewhat similar experiences as you. He was diagnosed in 2012. After aggressive treatments with the usual therapy combinations and two stem cell transplants, he enjoyed a 14-month remission. Fast forward to now, he has had all the usual therapies including Kyprolis. He has both high risk and low risk disease. As the Kyprolis is no longer doing its job, he has had a total of 5 stem cell transplants, which makes him ineligible for any additional ones, his doctor has now put him on the new drug daratumumab. His first infusion lasted 11 1/2 hours. He is now experiencing more fatigue than with Kyprolis and a big drop in platelets, but other than that, he is staying very positive. He stays very active, continuing to work. We will find out next week if the new drug is working.
I love your positive, don't give up, attitude. I remain very hopeful with all the new research and drugs being made available. Stay strong, stay positive. Keep writing. It gives others hope.
Dear Dee,
Thank you for your kind words. I am intrigued by how many stem cell transplants your husband has received. I only have had one and no more offered. That might be my age (71).
I am on the other monoclonal antibody, Empliciti (elotuzumab), which requires the addition of Revlimid and dexamethasone. Hopefully the infusion will take a shorter time with each week. I hope it is working too.
Good for your husband to keep working and good news with the next evaluation.
Maureen
Hey Maureen,
Another great column! Birthdays come and go. Races come and go. But inspirational Maureen carries on and on and on! Thank you. La Chaim!
Nancy
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