Myeloma, Party Of Two: Searching For Spring
All around me, spring has sprung, as Mother Nature begins anew.
Earlier this season, bright songbirds and plant-filled nurseries issued clarion calls to action, and I obeyed. I planted red, yellow, and blush colored roses. I arranged a space for three hydrangeas under the live (evergreen) oak tree, and my irises are showing signs of life. I’m excited about potential blooms and al fresco dining on cool spring nights.
But, honestly, it’s not the usual cabin fever that has me traipsing through the tulips. I am warming from a long, two-year winter -- a winter that began when I first heard the words ‘multiple myeloma.’
Over the next couple of columns, I will share ‘our diagnosis story’ -- that of my husband Daniel, the patient, and me, the caregiver. And while our experience may not be unique, I hope that the lessons we’ve learned and the hope we have helps those hearing their winter-inducing words for the first time.
It was 2012, and my husband and I were in our mid-thirties. He was an aerospace engineer, and I was an instructional designer. We lived in a wonderful historic neighborhood near downtown Fort Worth, Texas, where we restored a two-story, prairie-style American Foursquare built in 1914.
We were active in our neighborhood association, where my husband served as Director of Infrastructure, helped start a community garden, and started the “pancakes in the park” tradition for the Cowtown marathoners running through our area. We both volunteered for our annual home tour, where I took roles from home tour director to tour booklet designer, and he served as home captain and docent. We hosted Sunday supper clubs, walked to nearby sidewalk bistros, and tuned in with friends to view the next riveting episode of Downton Abbey.
It was idyllic.
My family lived close by, and we saw them often. We sang in chancel and civic choirs, and had even performed at Carnegie Hall in New York City. When we weren’t antiquing, we’d travel or attend the opera, theater, and symphony. We had been married eight years, and we were ready to start our family.
Like many husbands, Daniel was a ‘conscientious objector’ when it came to medicine. However, our family plans gave me cause to nag him relentlessly until he agreed to a wellness checkup. Our general practitioner performed a physical, and told him that his labs would be ready in a week.
Unbeknownst to me, the doctor called him back in to the office a week later. There was a protein that was off in his blood work. Daniel provided a new sample, and the results were sent off to the lab again. Again, the blood work was abnormal. At that point, our practitioner wanted to refer him to a blood specialist, who was able to do a more specialized test, “just to rule out any serious problems.”
The doctor didn’t seem concerned, so Daniel didn’t ask any questions. It all seemed routine. Daniel didn’t even mention the referral to me. He didn’t figure that there was a problem, but he’d let me know if there was anything to be concerned about. (Classic! My spouse knows if I get a measly hangnail, but I’m clueless to his major medical testing unless I pry it out of him. Needless to say, I go to all appointments now!)
Unfortunately, when Daniel arrived at the clinic, he knew that something was seriously wrong. Under the specialist’s name on the door, he read the words “hematology and oncology.” He was completely blindsided! He didn’t know that he was going to an oncologist’s office, and he certainly wasn’t told that he could have cancer. The general practitioner never mentioned it, and he didn’t ask.
I can’t imagine how he felt in that moment, or what the rest of the appointment was like for him. I wish more than anything that he hadn’t been there alone, but we learned a valuable lesson: Physicians work for us, their patients. Always ask questions, and don’t leave until you understand exactly what they are saying and what to expect next.
During the visit, the oncologist explained that Daniel’s labs were consistent with an IgG kappa monoclonal gammopathy of undetermined significance (MGUS), a pre-cancerous state that could develop into multiple myeloma, a cancer of the plasma cells in the bone marrow, which did not have a known cure. (Daniel's diagnosis was eventually revised to be smoldering myeloma -- more on that in my next column.)
That night when I came home from work, Daniel told me what had transpired. I heard the words MGUS and multiple myeloma for the first time, and like most people, I googled it for more information.
I was shell-shocked by what I read. My husband’s motto has always been “strong like bull,” which he exemplified by his calm, quiet demeanor, but I knew that he was shell-shocked too. I had a million questions in my head, few answers, and a sick feeling in my gut. I think we both did.
We went together for his next oncology visit. Based upon the new labs, the doctor officially diagnosed him with MGUS. I remember thinking that it was all so surreal. I heard the words coming from the doctor’s mouth, but his demeanor seemed matter of fact, like he was talking about the price of gasoline.
He would see Daniel once a year to do blood work and urinalysis. As long as his labs stayed in the acceptable range, nothing else was necessary. He cautioned us against worrying about this too much. I remembered thinking, “Um, really? I have a Ph.D. in ‘worry,’ so not really an option here.”
He said that many people lived with MGUS without ever developing myeloma. He added that, if his disease progressed, it would show up in the blood work. With that, he sent us on our way. He didn’t do any other tests, and even warned us of specialists who might recommend invasive procedures, like bone marrow aspirations, which he thought were unnecessary at so early a stage. It was all very casual.
The problem was that we didn’t feel very casual at all. There’s a part of you that wants to believe the specialists when they say, “Don’t worry, it’s not a problem,” but I had a terrible feeling that there was more to come.
The sun was shining as we walked to the parking lot, but I felt chilled. My two-year winter began that day. There were intense storms on the horizon, but I didn’t know it. (Lesson 2: Keep your chin up. It could always be worse! )
It was to be a season of worries, muffled cries in the shower, and desperate attempts to find empowerment in the powerless role of “caretaker.” I tried to adroitly navigate the seas of specialists, procedures, and terminology with positivity and encouragement, but it’s been a journey in patience, acceptance, and peace – all qualities that spirited perfectionists, like me, find difficult to embrace.
It would eventually get better, but we had a long way to go.
Join me next month for part two of our diagnosis story and my search for spring. I welcome your feedback and wish you sunshine, hope, and wellness.
Tabitha Tow Burns is the newest columnist here at The Myeloma Beacon. In 2012, after an initial diagnosis of MGUS, her husband Daniel was eventually diagnosed with smoldering myeloma. Tabitha's column will be published once a month.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at
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Well, the good news for Daniel is that the tempo of his disease is quite slow and many folks remain in the smoldering stage for years, and some (uncertain of the percentage) NEVER progress to MM. Not sure what the storms were for you during the past two years but you are certainly right on one thing...it CAN be A LOT worse!
Thank you soooo much for your column, Tabitha. I'm looking forward to hearing more about the journey you and Daniel have had.
Steve - I would say that Daniel's eventual diagnosis of smoldering myeloma, which brings with it a 50 percent chance of developing into full-blown myeloma within 5 years (and a 66 percent chance within 10 years), would be considered a storm by just about anyone's standards. Particularly if you're in your mid 30s.
Welcome to the Beacon, Tabitha! I will look forward to reading yours and Daniel's story. Its good to stay strong mentally and physically, as much as possible. I can see where the expression 'strong like bull' comes from ... I live in Cowtown also! (Calgary)
Hope that you can get through this ordeal and get back to all the activities in your lives that you like to do.
Thank you for sharing your experiences with us. I too have smouldering myeloma, and it will be wonderful to hear of other people's experiences with this condition.
Since the initial shock of my diagnosis, I have graduated from my college courses, learnt to drive, and have taken up running. I was a real couch potato previously. I will not let it take over my life and I refuse to live by my blood levels.
I hope other people can learn to see how beautiful life is and embrace it as much as we can.
Hello Tabitha. It is so nice to read from a caregiver. Thank you for your article. I look forward to following it. I am also my husband's caregiver. He was diagnosed 1 year ago. Each day is a New Day.
I've been privileged to have lunch and sit next to the doctor who discovered MGUS, Dr.Robert Kyle, on 3 occasions, including March of this year in Scottsdale AZ.
According to him, MGUS is a grey area and most certainly an early pre-myeloma condition that more then likely the odds are in your hubby's favor that he may not progress into full blown myeloma.
Here's what the specialists that I've talked to from all over the world would recommend: a bone marrow biopsy is a great way to determine the amount of myeloma cells present. Also the FISH test, which is a part of the biopsy, will give genomic markers (deletions, translocations and gains). These are very important to give a barometer into the odds of progression AND don't listen to the stories about the biopsy, it's really nothing, I've had several un-sedated biopsies and laughed and talked with the nurse as it was being done, no worries.
Also, most importantly, listen to the local oncologist / hematologist BUT see a myeloma specialist. In your area, M.D. Anderson in Houston is excellent and see either Dr. Orlowski or Dr. Jatin Shah, both are great and will know how to proceed, which in my case I have high-risk smoldering myeloma IGA Kappa and I've had no problems or treatment for 5 years now.
Don't worry much and see the best, always deal with the head of the horse as we all know what comes out of the other end. Feel free to contact me as I've talked to the best in Spain, Italy and the U.S. and the two mentioned above are top notch.
God Bless,
Ralph
As noted at the end of Tabitha's article, her husband Daniel's initial diagnosis of MGUS was eventually revised to be smoldering myeloma. She will discuss this further in her next column, and a short note to that effect has been added to the middle of her article, where Daniel's initial diagnosis is discussed.
As Tabitha also mentions in her column, the events she discusses surrounding Daniel's diagnosis took place two years ago. A great deal has happened since then, including consultations with myeloma specialists, and those events also will be covered in more detail as Tabitha updates the Beacon's readers on all that has happened between Daniel's diagnosis and now.
I understand what you mean by waiting for spring. Our winter started in May of 2009. My husband, then 52, was diagnosed then with stage III IgG multiple myeloma. Multiple fractures and collapsed vertebrae. I am his primary caregiver. It will be good to read a column from the caregiver's perspective. God bless you both. And you are right; it can always be worse.
Hi All,
Thanks so much for your comments. I'm so grateful to the Myeloma Beacon and for the insightful comments of readers such as yourselves.
It's challenging to communicate the peaks and valleys in a complicated diagnosis story such as Daniel's (hence, the multiple columns), but rest assured, we're in great hands now at a major research hospital.
Ralph, I agree with you. I firmly believe that one of the most important things that a newly diagnosed patient should do is seek the help of a myeloma specialist and undergo the genomic tests that you describe in order to develop a complete understanding of their specific type of myeloma. You will get a chance to hear more about our experience with that in next month's column.
Char, you are so right! Life is good, and we are aware every day just how important it is to celebrate each day as a gift.
Over the last two years, Daniel and I have followed the Beacon's timely news, patient experiences (Nancy, we've so enjoyed your great columns!) and the insightful comments of readers such as yourselves.
This tremendous resource has brought us encouragement, support, and great advice. Through your voices, we've felt that we weren't alone as we began to learn about myeloma and seek treatment.
I'm honored and humbled to share in the chorus that reaches so many patients and their families. Thanks all for reading, and keep "strong like bull"!
Brenda, bless your heart!
I can't imagine how tough it's been for you and your husband. Keep your chins up and know that you are not alone. I'm sending my wishes for healing and strength for you both, and know that I'll be remembering you in your journey.
I welcome your insights on how we caregivers can best support our loved ones, advocate for their needs and recharge our own batteries, so that we can all fight the good fight.
Best wishes,
Tabitha
Hi Tabitha (and Dan)
I just wanted to say I'm 36, and I've been living with myeloma for 4 years! Life goes on right? Not exactly the path I saw my life taking (cancer at a young age) but, like Deb, I've had some good times following my diagnosis. Getting married was one of them for me.
I have had full blown MM, so I heard the diagnosis the same day I was admitted to the hospital and put on blood thinners, high doses of steroids, a bunch of other meds, and told I'd be starting chemo on Friday! It was a whirlwind introduction into cancer care. I never heard of myeloma before, and didn't really know anyone who had been through cancer treatment.
Hi, my name is Ellen and I have recently been diagnosed with MM. Unfortunately, my Dad was also afflicted, and passed away when I was 14, in 1969. As frightened as I am right now, I thank goodness that there are treatments available now. I just began the RVD protocol, with the hopes that I will be able to have a successful stem cell transplant in the future.
What do you find that helps with anxiety, which can be overwhelming? I am trying my best to continue on as regular a schedule as possible in terms of work, which helps to ground me, and to think about something else besides MM, but this is a very tall order.
Any suggestions would be appreciated. I am grateful that there is a community out there where we can connect and share.
Ellen Goldstein-Harris
Looking after our spiritual side is also important to our not being overwhelmed. I am 3 years since diagnosis and have had VMP and now Revlimid and dex treatment. Learning to live one day at a time and getting through it, builds strength mentally that one can deal with what comes each day. This takes focus, and one can benefit from reading, studying and meditating on scripture, to be able to build and maintain focus. It also helps to have loved ones, like ones spouse and children and friends that keep us moving in a good direction on nutrition, physical exercise and spiritual development.
You may have heard the question " how do you eat an elephant?" The answer is one bite at a time. The same goes for dealing with the myeloma elephant. One day at a time. Don't look at all the possibilities into the future as they may not materialize.
Regular healthy routines of nutrition, exercise and spiritual development will enable one to deal with the myeloma experience daily and not be overwhelmed.
Thank you Eric. All of the unknowns are overwhelming, but I am trying my best to live day to day and take the time to appreciate the beauty of the world, my family and friends and my work. What nutritional guidelines would you suggest?
Thank you Tabitha for your article. You write very well and there is a dream-like atmosphere in your story that makes it similar to a good novel. But novel it is not, unfortunately! Details like reading the words hematology and oncology one next to the other made me leap back to those first days with the initial shock, which for me was around the same time of your husband’s diagnosis (and my multiple myeloma was Stage 3). No bone fractures or other permanent troubles luckily. So far.
It pains me to learn about young people getting this disease. It should be a time to consolidate their career, raise their children, have fun and do interesting things without this terrible weight.
As you talk about ‘two years of winter’, I imagine that you have serious worries. We will know more about them next month, but in the meantime, I hope you will continue to write ... maybe a novel so we can all escape from this worrisome reality for a while!
Ellen, when I joined this group last fall I asked the same question, as worries and fear used to creep up on me constantly, and the battle between the dark thoughts and my reassuring and encouraging myself was exhausting. I feel much better now. Feeling physically fine certainly helps.
I think that the things which helped me greatly were two. One was starting therapy with a psychologist who only deals with cancer patients. In Italy, where I live, there are associations that provide such professional help free. The other was starting on a new, challenging and fun activity, taking drum lessons. I got over the embarrassment of wanting to do it. I am 59 and I had wanted to try it for years, and now that I am ill, I understand that what matters is trying to live and think as normally as one can.
When I introduced myself to the myeloma group, Tom said that he thought it was important to embark on new activities. His words inspired me and I have to say that it is doing me a world of good.
My therapists says that there is no point in denying the seriousness of the situation, but that we should find a balance, accept this reality, and carry on.
Ellen Goldstein-Harris
http://www.myelomabeacon.com/news/2010/09/02/guide-to-nutrition-in-multiple-myeloma-part-2-supplements/
The above link gives you a list of supplements that make life much more livable as MM patient. I personally use many of the items listed and then some. Daily dry saunas help greatly in minimizing muscle and bone pain. You may want to find yourself a good Naturopath to complement your allopathic medical care, because many of the MM treatment regimens have side effects that can be managed and minimized by nutraceuticals, homeopathy and herbal concoctions.
Tiredness, peripheral neuropathy, muscle cramping, digestion issues, colds, flu, pneumonia, anemia etc. can be minimized and thus help one to focus on living today, enjoying today and not loosing focus. Each of us is different, so personal research is key for all of us to find the nutritional program that minimizes the symptoms and side effects of the MM treatments.
I hope this gives you some avenues of personal research that can complement the MM treatments you are undergoing.
Dear Tabitha, I found your story so moving that I was in tears before I even finished it. We live in Fort Worth and are very familiar with the neighborhood you described - what a full life you lived. You will continue to warm up with the lovely flowers to keep you company!
At my diagnosis, I was called back to my primary physician's office after tests and was told I have multiple myeloma. I was alone when getting the news and felt in a daze. I was sent to a good oncologist, but he was not an MM specialist, and we were living in Midland at that time, and there was not one there. Fortunately there is an MM physician who flies to Midland once a month, arriving in the a.m. and flying back to Dallas in the p.m And he is fabulous and obviously a caring person. This was in late 2010, and I am now finding myself referring to "next spring" when walking through my husband's beautiful flower garden - I even startle myself to think that far ahead now.
Should you want to visit a support group, there is an exceptional one that I will even drive from FW to Dallas for! It is the North Texas Myeloma Support Group. It meets on the second Saturday of every month from 10:00 AM until 1:00 PM at Baylor's new Charles A. Sammons Cancer Center. This gives those who attend an opportunity to talk freely, or just listen. I find it allows me, as well as my husband, to talk with others without feeling uncomfortable or self-conscious. Some of the people who attend have been diagnosed with MGUS and smoldering myeloma. We always learn something new, and I leave feeling lifted up. By the way, there are many husbands who attend and participate in the discussion.
I am looking forward to your next column!
Tabitha,
From one Burns to another -- amazing job on your first column for the Beacon! Thanks for sharing your and your husband's experiences with us. Many of the people who post to the Beacon forums are caregivers, and if I'm not mistaken, you are the only current caregiver columnist for the Beacon. I think it will be helpful to lots of folks to hear about a caregiver's perspective from you.
I'm looking forward to your next column and hoping that things are going well for your husband, and, by extension, for you.
Thanks again all for your kind comments. I'm so grateful for the Myeloma Beacon and the "Myeloma family" that we've come to be a part of over the last two years.
I will especially be sending positive thoughts to you, Lys, Ellen Goldstein-Harris, Eric, Linda, Annamaria, and Mike. I hope that your treatment/the treatment of your loved ones goes well in the days and weeks to come.
Keep strong everybody!
Tabitha