Letters From Cancerland: Telling The Story
As I wrote last month, in early June I went to the Mayo Clinic in Rochester, Minnesota, at the suggestion of my oncologist to get a second opinion on my cancer.
There are many ways to tell the same story.
This is one way. I have relapsed. The myeloma is progressing at the same inexorable glacial pace that has marked it for the last decade. I have stopped taking Revlimid (lenalidomide) and will begin Kyprolis (carfilzomib) at some undetermined date.
There are many ways to tell the same story.
This is one way. There is a large carillon there. A carillon is an instrument consisting of at least 23 large, tuned bronze bells, fixed to beams. The bells sound when struck by clappers, which are attached by wires to the clavier, consisting of a pedal board (think of a pipe organ) and large oak keys called batons. The carillonneur plays the foot pedals and batons, striking the batons forcefully with his fists. The current carillonneur once had a six-month layoff while the carillon was being repaired. During that time, his playing calluses softened. When he was finally able to play again, he looked down at the batons and saw blood on them from where his hands had broken open.
There are many ways to tell the same story.
This is one way. I have had amyloids present in the last two bone marrow biopsies, one in early 2014 and one this month. Until I sat down with the myeloma specialist, I had never heard the term “amyloid” and did not know what the ramifications of that term were. Now I know.
There are many ways to tell the same story.
This is one way. In America in the late 19th and early 20th century, many hospitals, usually private, were started by subscriptions (pledges) of the local citizens, and then grew only when someone died and left a hefty bequest. In my town, that is exactly what happened. What did it take for two brothers during their lifetimes to create a non-profit clinic in a small county seat in Minnesota in the same era when writer Sinclair Lewis, a Minnesotan and the first American to win the Nobel Prize for literature, was savaging small towns for their closed-mindedness and lack of vision?
There are many ways to tell the same story.
This is one way. The myeloma specialist said that cancer is like an army and one needs a large army to conquer a country. My army is small. But amyloids are like chemical warfare, he said. Very small amounts can do great harm. When amyloids leave the bone marrow and travel to soft organs, they are chemical weapons. Mine appear to still be mostly contained in the marrow.
There are many ways to tell the same story.
This is one way. There is a large atrium there and there is a grand piano in the atrium. Anyone with any skill level may play, and it is typical to pass through and hear someone playing something – ragtime, show tunes, something. On Thursday, a young man was playing Beethoven’s Pathétique Piano Sonata No. 8 from memory and everyone stopped to listen.
There are many ways to tell the same story.
This is one way. The myeloma progression and the amyloid factor are not of immediate concern. Of immediate concern is my alkaline phosphatase level, which is abnormally high. The myeloma specialist wants that checked out this month in Ohio by a gastroenterologist. He thinks it is not myeloma related and not a malignancy, but rather an independent liver disease. When I tell him my youngest brother was diagnosed ten years ago with primary biliary cirrhosis, an auto-immune disorder, he raises his eyebrows and nods.
There are many ways to tell the same story.
This is one way. In 2010, performance artist Marina Abramovic had a retrospective of her work at the Museum of Modern Art in New York. For three months, she was the installation, sitting at a small table. Museum visitors would sit in the seat opposite her, she would lift her head, make eye contact, and then stare at the person silently for one minute. Two decades earlier, she had collaborated and had an intense relationship with another performance artist, Ulay, but they had parted in 1988 and not seen one another since. When she lifted her head in 2010 and saw Ulay sitting in the public seat, her eyes filled with tears.
There are many ways to tell the same story.
This is one way. I see the gastroenterologist on June 22. I see my local oncologist on June 30.
There are many ways to tell the same story.
This is one way. This consult reminded me forcefully that life is short and that I am in a very, very small minority (“rare,” said the myeloma specialist) of longtime survivors. I am on a branch that is getting thinner and shakier with each passing month. When I talk about what I learned with those I love, my voice breaks. When I shared the week with my friend Margo, my eyes filled with tears. Margo put her arm around me and her eyes filled with tears too.
There are many ways to tell the same story.
April Nelson 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 .
Oh, April. I'm still trying to catch my breath. You've written such a wonderful, creative column. Yet it has that one horrible sentence right at the beginning ... a sentence I realize you couldn't really write any differently. "I have relapsed."
I'm sorry. I wish you had gotten different news.
I am glad, though, that you seem to be getting good advice about what to do next. I also hope your new treatment allows you to go further and further out on that branch you've been on, and that it continues to hold you no matter how far out you go.
Thank you, April, for the beautifully written column. It feels so outrageous to weather the myeloma so successfully and receive the diagnosis (or potential for a diagnosis) of an unrelated but serious disease. I am in the same position and it does seem "too much!" Best wishes for a positive outcome for both your consultations.
April,
I've followed all the Beacon's columns and authors since my diagnosis in 2008, AHSCT 2009 and inevitable relapse in 2012. But today, I cried, life is sooo short. Everyone, please take action now to live life to the absolute fullest that you are physically and psychologically able. I am hanging on for my daughter's (only child) out-of-the country wedding in September. And I am booking another trip to see her and her husband in November. I'm not giving up and I will keep praying, planning and crying at times. But I do have hope and I send all my hopes and healing thoughts and prayers to you.
Dear April, I think that you have written a beautiful column! The carillon, the art gallery and more are wonderful images. I hope that the specialists whom you will be seeing will have some positive answers to the health problems identified at the Mayo Clinic. Best wishes to you!
April, I'm sorry you've relapsed though I feel the strength of will in your words, struggling through the frustration and fear you're dealing with. This contest wears one down. I pray that the next news you hear is a hopeful way to continue the story.
Wow, I'm speechless....an amazing column.Thank you for sharing.
April,
I am so sorry that you have relapsed. My eyes are filled with tears after reading your beautiful essay. My thoughts and prayers are with you.
Olga
Dear Nancy,
Thinking of you and hoping that this day is an easier one. Thank you for reminding me about what's important and the different feelings we all go through.
Sylvia
Aloha April,
Thank-you for a beautiful column. I love your thinning branch analogy. Really brings it home. Once again you have made me cry.
We are on a marathon run here. Look forward to whatever milepost you have coming up and don't worry about the one after that.
We are running with you.
Aloha
Tom
"...for whom the carillon tolls..."
It is for thee and me, it is for we.
April - my heart goes out to you and yours. The story is so well told; thank you for finding the strength and the perspective to craft this amazing piece. Mayo's one of the best places for amyloids; so grateful your oncologists encouraged your visit there. Let those tears flow freely with those you love; may it be an avenue for settling your soul over the days and weeks to come. Let's throw in a tolerable, effective treatment plan from the gastroenterologist while we are at it.
April - As usual, a wonderfully written column. Your ability to write so elequently when confronted with a setback is impressive and an inspiration to others. I hope you get positive news from your visit at the Mayo.
April, while reading your column aloud to my husband I became so moved I couldn't finish it. You have a true gift for writing. The poignant stories you wove together reflect the skill and wisdom of a great writer. I always look forward to reading your columns. I wish you continued strength for the days ahead. Please know that we all hold that branch up for you.
April:
Unusual news, dealt with in your usual wise and sage manner.
Keep going.
I am sorry I made so many of you cry. Thank you for all of your wonderful, heartfelt, supportive comments. And kudos to Steve for the best column comment ever. Ever.
As is so often the case in all of our lives, real life events have shoved the myeloma saga to one side. My older brother just had surgery yesterday to remove two (2--count 'em--2!) tumors from his brain, metastasized from a tumor in his lungs. No symptoms and none of this known until 5 days earlier, when he suddenly lost control of his right hand. The surgery went like clockwork, the recovery will be lengthy, and the prognosis (which will not come until Monday when the oncologist meets with my brother) is likely to be less than optimistic. On the other hand, my brother's medical crisis allows me to fly under the radar and get the liver piece solved (I hope) and on with my treatment quietly while everyone takes care of my brother!
As the others already stated, this was a beautifully written column. Positive energy being sent out to your entire family as you deal with your current medical issues.
April,beautifully written.
It is snowing in my heart for setbacks, relapses while balancing on a "thinning branche". It is snowing in my heart.
Thank you for an eloquent column, and I agree that you have woven various life experiences together very well. I am sorry for the setback in your relapse. However, I see the thinning branch just a bit differently.
Please remember that the branch on a real tree grows in circumference as it stretches outward. A live branch is gaining strength with each passing year, as are you and the capabilities of medicine and science to care for you. When you return to the local oncologist or to Mayo, please be sure to ask about the possibility of including a clinical trial with one of the upcoming antibody treatments. And did the Mayo myeloma specialist discuss this with you?
Best wishes for an answer to the liver issue. Again, the antibody treatment would fight myeloma and not be a load on your liver. I suppose maintenance therapy like Revlimid and other treatments have not been helping the situation. You will be in my prayers. You be living life in the faster lane, I believe. You go, girl!
April - If possible, get on Kyprolis soon, and get yourself educated on what food help and hurt. I have had good results with no dairy, no beef, and little other meat. Have shellfish and salmon; tons of vegetables; and quite a bit of fruit. No turmeric (which is sooo good otherwise, but while on Kyprolis it interferes). It has helped me quite a bit so far. MM is different for each one of us, wicked disease.
Best of health to you and thank you for all at once quite lovely and painful writing.
Thank you for the continuing comments on this column. Other family issues have cropped up, which is allowing me to fly under the radar while I sort out where I am going with this disease. Right now I am sorting out the liver issues with a gastroenterologist; I do not want to start a new treatment regimen for the myeloma until that puzzle piece is solved. Nicole P., I read your "no dairy" with dismay. I clearly need to read about diet and Kyprolis. No dairy? That could be a deal breaker.
Thank you, April, for a very moving and enlightening contribution. Your approach had me switching gears several times, but it was good. While we all deal with this disease called multiple myeloma on a day by day basis, we need to be reminded that the world still turns, people make the news, hearts are broken, and there is life to be lived. As a long-time survivor, your stories give me hope for my husband. It is hard to have hope when you get the test results and they are not as improved as you would have liked.
Please continue to share your stories and remind us that there is still a world out there beyond the walls of our cancer centers. Please continue to share stories of your journey - the positive, and the not so positive. We need your stories and those of the other Beacon contributors.