Sean’s Burgundy Thread: Fevers, Flu, And A Few New Myeloma Friends

Her eyes twinkled at me through the slit below her bright green stocking cap and above the powder blue mask that covered her nose and mouth. She was tiny compared to the waiting room chair. Her feet didn’t quite reach the floor, and I noticed that her tennis shoes had a fuzzy green ball on the laces that matched her stocking cap in both color and whimsy.
I had arrived at the clinic without an appointment and checked in at the reception desk to see if my doctor could squeeze me in. There were only a few chairs available, and as I was deciding where to roost, the lady in the green hat patted the seat next to her and said, “There’s plenty of room for one more – if you’re nice.”
I plopped myself wearily into the padded chair and offered my thanks for the invitation.
“Don’t mention it! But I gotta tell you that I’m a talker. If you’re feeling too puny for me to be yapping away, just let me know.”
I chuckled, and without skipping a beat, she asked, “You’re having a tough day, aren’t ya?”
I guess it was written on my face. The day wasn’t going as planned. I wasn’t feeling great, and I was aggravated.
Three hours earlier, I’d been sitting in an infusion chair at my local cancer clinic getting prepped for my 61st week of maintenance chemo for multiple myeloma. Normally I would have a complete blood count, a comprehensive metabolic panel, and other tests done, with the results being faxed to my treatment team at the Myeloma Institute in Little Rock, Arkansas. They would, in turn, give me a green light to receive the weekly infusion of Velcade (bortezomib). It had worked the previous 60 weeks like a charm.
But on this day, I told my local infusion nurse that I wasn’t feeling my normal ‘spectacular’ and that my kids at home had been under the weather the last few days. She said that I looked a bit flushed and checked my vitals to discover that my temp was 99.5 ºF. The general rule is to not infuse patients with fevers.
We decided it would be best to call Arkansas to see if I should proceed with my blood work and subsequent Velcade infusion even though I had a low grade fever. After 30 minutes, a call came back that my oncologist was out of the country and that someone else would call back soon to advise me. After another hour and a half wait without hearing from anyone, I decided to drive the twenty minutes to see if my personal physician might have an inkling as to what was causing my fever.
Why I shared all of this with the green-hat lady I don’t know, but she had a very kind manner about her. Then she said, “If it’s not one thing, it’s another, with myeloma! My husband had fevers, too, when he went through it.”
She went on to say that her husband had been through the multiple myeloma battle nearly 20 years earlier in New Jersey and that he had lived only a couple of years after being diagnosed. While it was devastating and heartbreaking, her husband had shown amazing courage and strength.
“I have to believe that in 20 years, there are better treatments these days, right? They don’t use electricity, lobotomies, and leeches anymore, do they?’ she said dryly, then cracked up after a few seconds.
Sensing my shock, she added, ”Sweetheart, I have fought two different cancers, diabetes, and a heart problem. At my age – 89, if you’re too polite to ask, and I know I don’t look a day over 88 – sometimes your funny bone is the only thing left worth tickling! And I love to be tickled!”
Her wicked sense of humor caught me completely off guard, and I couldn’t help but belly laugh.
Laughing felt good. It’s always been one of my coping methods through all of the chemotherapies, stem cell transplant recoveries, unmentionable bone pain, and the unknown challenges that seemed to lurk around the corners. But I especially loved humor coming from such an unexpected source as this strange little lady!
We went on to discuss the advancements made in multiple myeloma in the last several years, and she was genuinely pleased that patients were doing better and living longer.
It was then that my name was called to go in to see the doctor. Before I could rise, the funny, green-hat lady took my hand, looked me in the eye and whispered, “You’ve stared death in the face with your myeloma, don’t be afraid to stare right back and tell it to skedaddle. Don’t be afraid. You are stronger than you realize!”
Wow! Who was that masked woman? I almost started to cry.
It turns out that my doc wasn’t available, and I was seen by a new partner in the practice whose uncle had and recently passed away from – you guessed it, myeloma. Thus, she was more knowledgeable about multiple myeloma than the average bear and quickly took my temperature, ordered a nasal swab, and determined that I had Influenza B.
By then, my temp was 100.5 ºF and as it was after 5 p.m., I was sent to the big hospital emergency room 40 miles to the north where they could speedily turn around blood work at this time of night and had infectious disease docs and oncologists on call should something go awry. This doctor knew how important it is for myeloma patients to jump on potential infections.
I looked for the waiting room yoda on my way out, but she wasn’t there. My wife had arrived, and we high-tailed it to the emergency room (ER).
Although there were 90 waiting patients in the ER, I was given a mask and ushered into a private room immediately upon arrival. The ER doc finally got in touch with a Myeloma Institute doc at 9 p.m., and they decided that it would be best to put me on a cefepime anti-bacterial IV to stave off potential pneumonia, double my dosage of Tamiflu (oseltamivir, which I had been taking prophylactically during the flu season), and add Levaquin (levofloxacin) to my medication list. X-rays showed that I did not have emergent pneumonia.
So as I write this just a few days after adding Influenza B to my resume, I am still spiking fevers, taking my meds, and wondering if I will get back to my maintenance chemo #61 this week. My whole family is now taking Tamiflu, though they are feeling fine. Incrementally, day by day, I am feeling better too.
I can’t help but think about the interesting myeloma connections I came across that day. A curiously funny lady in a green hat and a new general practitioner well acquainted with my off-beat blood cancer – each one, in their own way, doing their level best to keep me going. I am so thankful for these simple gifts.
I hope that you are feeling well out there in Myelomaville. Stay connected!
If you are interested in writing a regular column to be published on The Myeloma Beacon, please contact the Beacon team at .
Sean: I hope you continue to improve. How wonderful that you happened upon someone with a great attitude! (It could just as well have gone the other way.)
Today, while my honey was getting an infusion of Zometa, I visited with a woman who has been living with Malignant Fibrous Histiocytoma, for almost 20 years! I had never heard of this type of bone cancer. The survival rate is usually around five years, but I soon learned why she'd made it so long - attitude!
Love your columns.
Keep well - keep writing!
Sarah
There is a bit of the miraculous, heavens opening up, angels singing sort of happenstance at times with this beast, Myeloma! I so enjoyed reading yours!
Glad you are feeling a tad bit better too!
Sean, ah yes, the things that happen when you least expect -- a new friend who just happened to have a connection to myeloma! What are the odds!!Glad you're feeling better - thanks for sharing.
Wow, great story. I just love it when you meet someone that seems to be heaven sent to give you a message!If it's any consolation, I think
the B strain is the milder flu bug. Feel better soon!!!
you are the ulitmate story teller Sean...I pray right now with complete faith that your story telling is far from over. I enjoy and hang on your wisdom, posts and blogs. Have I told you how lucky I was to have shown up in that audition room in Virginia Beach that day when you (and some others...) changed my life. How would I ever know how that day would lead to today... when I needed tears thru laughter the very most.
Sean....I hope you are feeling MUCH better by now. LOVED the story of the woman with the fuzzy green balls on her shoes....thanks for sharing God's angel story with us all. Still smiling....
Hello! Just wanted to report that after having fevers for eight days, I am feeling much better and back on my maintenance chemotherapy track. I still chuckle thinking about the 'green hat' lady. HIPAA laws preclude me from finding out who she is, but she's definitely on my prayer list!
Hello: I was diagnosed with MM in 2008. Stem cell transplant in 2009. I am 55 years old. My husband and I were wondering if any fellow MM like to travel. We are thinking of travelling in the next year or two instead of waiting. What are your thoughts and is travelling out of the question?
Your thoughts would be most welcome.
MI MI
Hi Mi Mi - I am 58 years old, was diagnosed with MM in Nov 2009, left for a 12 day trip to Costa Rica in January 2010 in between chemo treatments, had a stem cell transplant in June 2010, then left in Dec 2010 for a 16 day transatlantic cruise originating out of Barcelona and ending in Rio de Janeiro. My husband and I had a wonderful time and I would highly recommed traveling whenever the travel bug bites. There is no reason to delay - enjoy your life NOW! We've had several trips to the beach this year, and are planning another cruise in the fall. I get my blood checked every three months to make sure I'm still in remission, which is the only limitation on living a "normal" life. When this disease comes back, I'm going to hit it hard between the eyes again and keep moving. I wish you happy travels!