Letters From Cancerland: It’s Complicated
Thanks to Facebook, I have the perfect phrase to describe the current status of my health and my myeloma.
“It’s complicated.”
For the non-Facebook users out there, one of the (many) bits of personal information you can share with your Facebook crowds is the vagaries of your love life. Married, Engaged, In a relationship, In a domestic partnership, and other phrases are all choices in your personal profile.
And so is “It’s complicated.”
Boy, is it ever.
Right around the time you will be reading this column, I will be back at the Mayo Clinic for a quarterly checkup and a plethora of tests to confirm or reject a tentative diagnosis of pulmonary hypertension.
A yellow flag for pulmonary hypertension popped up when I had my port placed back in December. A post-surgery x-ray is de rigueur to make sure the lung did not get nicked. My lung was fine, but the radiologist noted on the report that there was “borderline” pulmonary hypertension.
Great. I’m telling you, the night brigade is always out there on the perimeter, bringing down the defenses.
I saw my personal physician, a family practitioner, soon after the surgery. Pat is a wise, warm, and wonderful diagnostician. She is the doctor who made the spot-on early diagnosis of my myeloma in 2004.
Pat frowned at the radiology report. She asked a few questions and answered a few of mine. Then she said, “Your medical profile is getting complicated, April.”
A week later I had my standing appointment with my local oncologist. Tim and I have been together since November, 2004 – a relationship length that beats those of some of my friends. He read the radiology report and frowned. He asked a few questions and answered a few of mine. He asked when I was headed back to Mayo. Five weeks? Great. He said he wanted Mayo to take the lead on the pulmonary hypertension diagnosis.
I told him what Pat said about my medical profile. Tim nodded. “I agree.”
It’s complicated.
I constantly am asked how I am feeling, how I am doing. I am very fortunate to have a close circle of friends and colleagues who follow my progress. I am also fortunate to have a larger circle of co-workers and community members who know my cancer saga and will stop and ask for updates.
But lately I don’t know what to say, beyond a shrug and an “I’m okay.”
I’m okay? Maybe. I’m way further down the road. I’m in the shallow end of a pool that grows ever shallower. I have a potential diagnosis of a chronic, incurable disorder that will complicate the myeloma treatment and potentially shorten my already shorter lifespan even more. I don’t even have the words to begin to explain how I feel about all this, or the knowledge yet to know what it may mean.
But thanks to Facebook, I have the perfect response.
How am I?
It’s complicated!
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 .
April,
It's complicated is perfect. I'm going to use it. Normally I do the shoulder shrug and say I'm ok. Thanks for this column.
"It's complicated" covers a lot of ground. It's a good and true response. I bet your supporters give you a "deer in the headlight look." Stay strong. I am two months into this. Just found out I have it on November 2nd.
April, your writing continues to speak to me in a very personal way.
The quote "night brigade is on the perimeter, taking down defenses" from my favorite book, "Being Mortal" is appropriate for all of us. Hang in there, you don't have all the data on the newest wrinkle.
Maureen
April, I'm stealing your response, and from now on I'll reply, "It's complicated," with an accompanying semi-mysterious smile.
Best wishes
My husband was diagnosed in April of 2013. Including a stem cell transplant, he began his 5th line of treatment just last week. It's been a journey and we are very grateful for mostly minimal side effects. He's had a tremendous attitude from the get-go.
His answer to the question "How are you?" is "I'm doing well in my circumstances, thank you." It covers the issue well for us.
Recently we shared with our families and a few close friends the deeper details of 'how he's doing' and I have to say I find great relief in knowing that others know more than they did. It's shared and that makes it better. Also, we are blessed to have literally thousands of people who pray for us personally. There is NO substitute for that reality and that community. God is able to hold us steady ... and He is.
I'm new to this Beacon community but have benefitted already.
Thank you for this article and many others I've read.
We press on!!
April,
For quite awhile when asked how I am I reply, "I'm ok". It seems to fit my current circumstances with this disease. As you face potential new challenges "It's complicated" sure is appropriate. Will be thinking of you and hoping for the best.
It is complicated! The perfect response.
April,
My stock answer to the question of how I'm doing is "so far, so good". I don't feel comfortable committing myself beyond that.
I absolutely agree with Maureen about the night brigade quote. When I first read that in your column, it really brought out the stark difference between how a long-term survivor can seem to the outside world and how they actually feel. For better or worse, that was really what prompted me to start writing a column.
Good luck with the latest complication.
Hi April, You express yourself so well. I'm glad to hear that you'll have the Mayo experts to clarify your situation, and wish you well. I received the same diagnosis seven years ago when a port insertion was attempted (not completed, as it turned out). Subsequent followup included my internist, who's also a pulmonologist, who thought it was not that, or else only very mild. Living with the uncertainties of multiple myeloma and other medical issues has been a challenge for me. Supportive family and friends have certainly helped ease what's often a challenging path. Thank you very much for your helpful articles.
Dear April,
Best to you as you get your next check-up at the Mayo Clinic. I'll be thinking about you. Your column says it so well - life sure is more complicated. Thank goodness for those who help us live with a lot of uncertainty. You take care.
April, talk about adding more to your plate! Gosh!
Keeping my fingers crossed for a good report from the Mayo Clinic, and wishing you lots of peace between now and then. It's hard to not worry about the important things over which we have no control, but I will let you in on a secret: I find that ice cream therapy really helps. Hopefully a pint of chocolate chip cookie dough will find its way to you soon!
April - Great article. We wish you well on your trip to the Mayo Clinic and a treatment regimen for your new diagnosis. We had never heard of pulmonary hypertension and had to look it up. I sure hope they can get it under control.
We have had to use your "It's complicated" on many occasions when describing multiple myeloma, its diagnosis and treatment, and my husband's condition. We have had 20 months to learn, research, and try to understand multiple myeloma, and we encounter new information nearly every day. It is difficult to explain to the uninitiated.
Again, the best of luck with your next visit. Take care and keep sharing - we truly appreciate it.
Spoiler Alert: don't read any further if you don't want to know how Mayo turned out.
I do not have pulmonary hypertension or any other heart/lung issues. There are other concerns and you can read all about them come March.
In short, it's complicated.
Thank you for the comments and the concern! I find it fascinating how we deal with disseminating information to friends, family, and sometimes complete strangers. Myeloma is always complicated, as so many of you pointed out, and there are so many answers to a benign 'So how are you feeling?"
This is awesome news, April! I am glad to hear that you do not have pulmonary hypertension after all! I hope that the other concerns are not as serious though.
So happy to hear that your visit to the Mayo Clinic was more positive for you. I enjoy your columns, and I wish for you peace with all your next concerns.
I love your response, "It's complicated!" My husband was diagnosed with multiple myeloma almost 9 years ago. Throughout the years, there have been many ups and downs ... chemo, stem cell transplant, close to complete remission, light chain deposition disease, loss of kidney function, dialysis, more chemo, and currently a weakened heart. Wow, I thought it was complicated back then, but now it's SUPER complicated. When asked how's he doing, my husband always says "fine, never better". Needless to say this drives me insane! From now on I am adopting your phrase "it's complicated". No truer words have ever been said about multiple myeloma. Thank you for your articles. God bless and I pray things get less complicated for you.
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