Myeloma Dispatches: Questions And Answers
“How are you?”
This innocent, well-intentioned question often trips me up.
I have lived in a small Colorado town for the last 40 years. Until recently, I was a nursing professor in the same valley for 15 of those 40 years. In addition, I have been a very active participant in this mountain valley community. I was a volunteer with the local fire department for years, I belong to the same small church, and I volunteer in schools and the local art organization. For fun, I participate in a local triathlon team.
You get the idea; I know a lot of people.
Many of these same people know that I had a stem cell transplant five years ago for a strange cancer. During that year, I was hospitalized seven times, usually in Denver – miles away. I was very sick and looked sick – pale, bald, and underweight. All throughout that difficult year, angels from the community gave our family immeasurable assistance. It included meals, baby sitting pets, drives to appointments, and an apartment in the city for follow-up visits. My close friends took turns spending the night with me in the hospital when my husband couldn’t be there. The personal notes of encouragement I received were a comfort during those dark times; I would read them over and over. The outpouring of support from this large circle of friends was powerful, sometimes overwhelming.
At the end of this demanding year, we changed our plans for retirement. We had bought land in another Colorado town, where the living expenses were quite a bit cheaper. The plan was to move there when we retired. However, we decided that we are not moving anywhere. This mountain town is our home town.
Move forward five years. I no longer look sick. I certainly am not underweight and have all my hair back. I wear bright colors, a bright smile, and often look younger than my 71 years.
Whenever I meet someone, the beginning statement is usually “You look great,” followed by “But how are you really?” The questioner is serious and focused. This is where I can get in trouble because my medical history is complicated.
After my stem cell transplant, I enjoyed two years of remission with just the Revlimid (lenalidomide) and dexamethasone. Answers were easy then. For three years now, I have been on one treatment or another fighting the chronicity of this disease. I call this fight my part-time job.
I learned quickly most people don’t know that multiple myeloma is a chronic, incurable disease. The same people who brought meals five years ago want to believe that the stem cell transplant cured me. So in the beginning, I felt a responsibility to explain my disease process to everyone. My children identify this as TMI (too much information).
A classic case of TMI happened several weeks ago at the grocery store, when a long-time friend asked the question. I pulled my shirt open to show her my new port. Her eyes widened, she backed up, gasped, and almost fell into the dairy case. I really thought she might pass out on top of the eggs and butter. “I don’t do medical things,“ she replied.
Note to self: Too much information, wrong setting, wrong person. That encounter was a low point for both of us.
After several similar embarrassing or ineffective answers, I realized that I needed new skills to manage the question.
Gradually, I have developed the following strategies that I consider and apply when people ask me how I am:
I consider the location. Grocery stores, art openings, and movie lines are not good places to give in-depth answers. This is not the setting to share “Today I received two units of blood, and I’m afraid my multiple myeloma is becoming more aggressive.” Instead, I practice “Reader's Digest” answers that are honest but not too honest. For example, I just reply “Today is a good day, I’m glad to be here. How are you?”
I identify who I’m talking with. If this is someone who has a meaningful relationship with me, they may want to know more. Usually I can tell if they ask for a phone call, or coffee, or a walk. I now also use email with several friends to provide updates.
I use the avoidance strategy when necessary. I believe avoidance in small measures can be helpful. For example, I now tend to go grocery shopping during the off times. If I am invited to a large community gathering, I assess whether I am strong enough to see a lot of people. If the event is something I’m not that excited about, I may skip it. I seek out smaller groups, such as exercising with a couple of friends, a spin class, or dinner together. At the same time, I make sure I am not isolating myself.
I find a safe place. When I realize that I am using the TMI response in all the wrong places, I know it is time to find a safe place – a place where I can be brutally honest about my feelings. I am blessed that I have several choices, including a weekly cancer support group, a monthly woman’s support group (which has been meeting for the past 15 years), and many good friends who are willing to walk, listen, and comfort.
When I am back on treatment, I usually participate regularly in the cancer support group. Attending the cancer support group and the woman’s support group is always a positive experience, with both laughter and tears. In both groups, I listen as much as I talk. In short, my life is rich in safe places to share my joys and fears.
How are you?
Do you have strategies to deal with this innocent question?
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 .
Maureen:
Thanks for the column! Sage advice, and I really appreciate the idea of both setting, person and timing. I'm fairly new to this, only 2 years in, so I struggle with who to engage, as well as where and when.
Thanks again-
Bill
My favorite answer to "how are you" is "well enough". As for TMI, I share detailed information only with friends who really want to know.
Maureen,
Love the article, I find myself saying the exact same thing now too! I say am glad to be here today! Blessed to enjoy the day, how are you doing.
I agree not many people really want to know details, they mostly ask to be polite.
Bless you,
Jeanine
Oh my goodness, EJ and I are dealing with the same thing now. He's started treatment for his first relapse, and is struggling. Everyone (close friends, family, etc.) are surprised by it. Many thought he was cured by his stem cell transplant! Some of it I understand - if he doesn't look sick, he must not be sick -- but other times I'm surprised by people's reactions. I too am having to balance my conversations and make sure I'm talking to the right person at the right time and in the right place. The forums at the Beacon are one of the few places I can let my guard down - thank you!
Lyn
Thanks for asking. The answer has to be, "As well as can be expected, and happy to be alive." What more can we say? Loved your article.
Julia
How true!
You have to know your audience. TMI can be a problem. After my transplant, there were a lot of people who assumed I was "cured." As one of my cousins said when I corrected her by saying I was not cured but in remission....."Whatever!" They don't really want to know. I think for a lot of people our statuses as incurable cancer patients is disturbing. After all, if it could happen to "her," it could happen to me!) Not that I would wish multiple myeloma on my worst enemy!
I am lucky to have a few wonderful friends who will listen to my travails. Then there's the second group who will listen with one ear, and say, "But you're OK, right?" It's difficult sometimes, but you realize, not everyone can cope with your diagnosis. I find family harder to deal with. I guess I believed at some point that blood was thicker than water, but I have learned that is not always the case. As I say, you find out who your "real" friends are, whether they are family or friends. I do have a couple of family members whom I sort of "divorced." The pretense was just too hard to continue. If it takes someone 5 months to pick up the phone and inquire how you are, game over. And when that person says, "But I asked this one or that one about you everyday!" That is an uncaring person. A phone call is the least you can do.
Loved the column, as always. I look forward to your next one, and I hope your current treatment plan works well and quickly, and without too many side effects. Keep on keepin' on, Maureen!
Wonderful article and you have a magnificent resume of life work and paying it forward! I think not telling too much, too soon generally helps others, they have the time to be free of the worry. Chronic and incurable is true as we know right now, yet it is as challenging and unique as each person. Seems we are not promised tomorrow, no one is really. Glad we have now!
My husband most often replies "I'm doing well in my circumstances, thank you." And though the 'circumstwnces' can be changeable, he is. Very proud of him.
Dear Maureen,
I have never responded to anyone's column nor asked a question on the Beacon, but I burst out laughing at your description of your friend who doesn't do medical things and almost passed out. How like my own 6'9", 37-year old son! He would have passed out cold had I shown him my Hickman line five years ago! I don't go into anything too descriptive with him, which is why I realize he's not the only one like that. Since I relapsed last summer, I answer I'm doing well today, thanks for asking. With close friends I explain more if I think they want more information, depending on time and place. I often edit the details with my son, daughter, and mother to keep things upbeat and not worry them. They have enough problems, and as long as there's another treatment or clinical trial to try, I feel lucky.
Thanks for giving me a good laugh today. You're a wonderful writer.
Karen
Thanks so much, Maureen. I am sure you have described situations in which that many of us find ourselves lately. I like your strategies for the person, the place and the time. I will also keep in mind the "too much information" mantra.
Unlike you, we only have a few people with whom we can discuss my husband's situation. We are pretty much on our own. Many in our family either do not "do medical things" or they are so busy with their own lives that they cannot spare us the time. It is sad but I try to not let it get me down. We have lost several relatives to cancer in recent years and I have the feeling that they would rather ignore the possibility than face the reality.
But for those few dear people in our lives that truly want to know how my husband is doing, I will follow your strategies. Thanks again for sharing.
Excellent article. It's so hard because I want everyone to know
But it's just like you said in your column. Besides, it takes too much time.
Terrific article, Maureen, on a topic that all of us fighting myeloma need to face. I think your strategy, based on location, circumstances, and with whom you are speaking is a great approach. Mine is somewhat simpler. I tell almost everyone I am doing great, and then quickly change the subject to ask how their lives are going. This works with most people, since everyone's favorite topic is usually themselves, their kids, or their husbands/wives.
There are, of course, to use PattyB's language, "those few dear people" in our lives who really do sincerely want to know all the details, and for these folks, I tell them what is really going on, but I also pull my punches depending on where we are and what I know about what is happening in their lives. Everyone wants and deserves a dollop of optimism, especially when the going gets bumpy.
And then of course, there is the safe place that all of us need -- whether a support group or a circle of family and friends where we can -- for our own sakes -- tell is like it is.
But usually, my response is "I'm doing great -- and how are you?"
When they ask, my response is " I'm alive" or " I didn't wake up to harp music, and it wasn't super hot, so I'm ok."
"I'm in great shape for the shape I'm in!"
With my friends and most of my acquaintances, they already know that I have a form of cancer. Most were surprised when they learned because they also know I am very athletic and "don't look like a cancer patient". I usually just say that the multiple myeloma is blood cancer that is treatable but not curable. Then I tell them that my treatments are keeping it at a low level. Some I might tell that I have to occasionally tweak the treatments to stay ahead of the cancer. Normally people don't really want to know more than superficial detail and that you are ok. I don't go into extreme detail even with my sons, as I don't need to have them worry. I give them enough information for them to understand, but TMI is confusing and just makes them worry. After 7 years, I don't want people to worry about or fret over me. All they need to know is that I have good doctors and am dealing with it, so far so good.
Hi Maureen - Thanks for the great column! I usually just say I am doing fine, unless someone wants more information! My close family and friends know more about the situation, of course. When I was newly diagnosed, I shared a lot more, and it probably was TMI!
Maureen - That was a great explanation of how we deal with the "How are you doing?" question. Made me laugh many times, especially the friend almost falling into the dairy case! I usually say "I am doing ok" or "I am not too bad". Sometimes people say "You look really good". I reply that it is not my face that hurts.
With all the blood samples, infusions, and injections, my arm modelling days are over! Thanks for the great relating of your experiences. They are pretty much universal for all of us MMers
I forgot one answer I sometimes use. "I am still on the green side of the grass, and that is always good."
I have learned over the last 3 year journey with multiple myeloma that giving too much information to common friends and acquaintances is a good way to clear a room pretty fast. Their question of how are you doing is usually just an ice breaker comment. Truly a long dissertation about my illness, treatments, side effects, is just too much for them. You can actually see them starting to look about for an exit strategy pretty quickly. Not so much that they don't really care, but information overload makes them nervous or reminds them of their own mortality and just how fragile life truly is. So I have developed my own approach and comment about just how great I am doing or feeling, or a general one like feeling pretty good today, or pretty good and getting good test results, or still fighting the good fight, I will never give up the fight, and any number of similar approaches, even though the day after my maintenance monthly treatment with CyBorD with Zometa makes me feel a little crappy for a couple days, I put on a good face and just deal with it because the rest of the month is usually pretty good in general.
Yes, best to turn the greeting to the other person, but then I find I am struggling with being gracious and not envious hearing about their healthy fun lives (a river cruise to Amsterdam, summers in Maine, a motorcycle trip out West, etc.), while I am "trapped" by constant treatment and ill side effects for the past 8 years. The good days are few and I relish each one, but I am becoming more of a recluse to avoid people. Suzanne Gay
I often don't look like a cancer patient and have to remind people that I am still taking a chemotherapy drug and will continue to do so until it doesn't work anymore or a cure is found. Healthy people don't understand that just because I'm not losing my hair or getting infusions, that I'm good to go and have lots of energy. I sometimes have to go the TMI route and tell them I have a woncky stomach because of the drug I take and never know when it will rear its ugly head. I had to laugh at your story where you pulled open your shirt, Maureen. I'm sorry for the lady who couldn't handle it, but I do get weary of The Question.
Hi Maureen,
Thanks for your column. There are a small number of friends who phone regularly and want to exchange and listen. There is one friend who I keep at a distance because I discovered early on that he could provide no support, due to his own psychological issues. Recently at the hospital a patient kind of reached out to me because he hadn't been able to dialogue with another myeloma sufferer. We talked for more than an hour and he thanked me for our dialogue. He is much newer to the experience, having been diagnosed 2 months ago. I was really happy to be of help in some small way.
All the best to you and everyone here at the Beacon.
Hello my myeloma buddies,
So glad the question struck a chord.
Bill F: There is a learning curve with this illness, and 2 years is well into it.
Jan G: I will promptly steal "well enough".
Jeanine: Thank you for the blessing.
Christa's Mom: You are definitely more vulnerable during a relapse so safe people are essential.
Julia Munson: Another idea for a response.
All of your responses are so encouraging to me. Maureen
Your comments have touched my heart.
Kathym: A good reminder that none of us are promised tomorrow, and everyone has their own struggle
Joanne LeRoy: I believe that my husband has the same struggle that I have as the spouse.
Karen: I have one son who sounds familiar to your son. The skill is in the editing of the details, and for me that continues to be a work in progress.
PattyB: Are there any support groups near you? Family members can be unpredictable. I'm so glad you have a "few dear friends."
Gail: Thanks for the practical part of "takes too much time". We do have a life of grocery shopping, post office, etc.
Rob: Your approach of shifting the subject to the other person is truly the most effective one. Sometimes I can be too vulnerable to follow through.
Hello again,
It is encouraging to me that we are utilizing similar strategies with differences in personal style. One key is assessing my own self in a honest way.
New quips from Bob McDonald and Katie to add to my library.
Ron Harvot and Nancy Shamanna remind all of us that we can learn as we add time to our survival. This last time I relapsed was scary for me because my lab values reflected changes in the disease. Yet I still "looked good."
Eric and Randy Strode: my sense of humor was injured, and I had trouble being clever with quips. Randy's description of post treatment days is an apt description for many of us.
Suzanne Gay: 8 years is a long time to be fighting the good fight. I'm only at 5 and half years and I empathize with your fatigue and even resentment at times. The "recluse" response is a red flag for my status; how can you challenge the isolation? Do you have a safe person or safe group to talk about this? And it is a common response for us to pull away. Take care.
Maureen
Maureen,
I really enjoyed this column. My stock answer, when asked how I'm doing with myeloma, work, or just about anything else, is "So far, so good". I feel that that's about as far as I want to commit myself!
I have definitely noticed that, if you look healthy, people tend to forget all about your myeloma and think it's a thing of the past. Someone I used to work closely with back when I was diagnosed, and so who saw me at my sickest, referred recently to "That disease you had", as if it were over and done with: I wish!
Thanks for another good column, Maureen!
Definitely a question that we all deal with repeatedly.
When someone tells me I look good, I interpret that to mean I don't look like a bald-headed zombie walking down the street in a hospital gown, dragging an IV pole along with me. I think that's the image of cancer patients that many people have in their heads.
I was that bald zombie after my SCT, but they didn't let me out on the street.
Mike
Hi Maureen,
What a great topic! I am new to all this (diagnosed in February/March after a T4 burst fracture and subsequent spinal fusion), so I started this journey with a huge surgery and post op course. I really do look and feel better now than I did before the surgery! Not for long, though, stem cell transplant is next month.
I really enjoyed reading everyone's comments too! I try to look at the person asking, and frame my answer for that individual. I find that I am not offended or put out by someone saying how good I look. I wonder if that will change over time? When I'm told 'how good I look', I thank them and I've been known to laughingly respond, "yeah, get cancer, lose 25 pounds and you can look this good too!"
As an RN for over 30 years, friends and coworkers know I'm pretty straightforward and am happy to share the medical specifics in a language they can understand. Most will ask specific questions. The generic, 'how are you?' gets a generic 'today is a great day' or 'last couple days have been rough' until I'm sure they want more information.
Thank you for such a thought provoking column!
Hello fellow travelers,
My fatigue is catching up with me being on the 3rd week of Revlimid and elotuzumab, sorry for the delay.
Dorothy Grace: 30 years as an RN will only help you navigate the mine field of treatment options, I wish you well for your stem cell transplant. I find the myeloma patient columns to be another supportive community for me.
Mike Burns: I got a great visual of the walking zombie look. Hopefully with so many cancer patients on the newer drugs, we will change what people expect patients to look like during treatment.
Trevor: Like you, a much smaller group of people know that multiple myeloma is a chronic, incurable disease.
Maureen
Hello readers,
Jeanine: I like to believe that many people are well intentioned, but the details may be too complicated or confusing.
Jan G: Thanks for another quick response. "Well enough"
Bill F: There is a learning curve to all of this. The most important piece for me to have in my corner: safe loving people to debrief when needed. I have sent this piece to my good friends for that reason.
Maureen
Great column. Lots to think about – I am constantly revisiting this issue. Sometimes my answer is "well, I'm here" and I let it go at that!
I loved this column! That's not to say I don't like and appreciate the other columns. I have just discovered the Beacon recently and have been devouring all of the columns. This one, however, made me laugh out loud.
Usually, if someone says I look good, I just say thanks. What I'd really like to do is ask them what they expected me to look like, but I probably don't want to know!
I understand the resentment part that someone mentioned in a comment. I guess we just have to deal with what life has thrown at us and enjoy what we can.
Thanks again for the laugh. Great visual about the dairy case!
Hello all, I almost missed these last comments, and they are all so meaningful to me. I am in the cancer center getting the Empliciti, which is working slowly. Unfortunately, I need another blood transfusion, this is my third.
April, I so enjoy your columns, so thanks.
Theresa, thanks for reading my column. I love writing for this community; it helps me.
Maureen
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