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Myeloma, Party Of Two: Trudging Through Winter

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Published: May 22, 2014 3:47 pm

After my husband Daniel’s initial diagnosis with monoclonal gam­mop­a­thy of undetermined significance (MGUS) in 2012, I couldn’t shake the feeling that the “treatment” plan of watching and waiting, which had been suggested by a local hematologist/oncologist, was not enough.

The hematologist/oncologist wasn’t a myeloma specialist, and he wasn’t connected to a research hospital. My mother had ovarian center in the 1990s, and I know what an impact it had on her recovery to have had a re­search hospital involved in her treatment.

I believed that we couldn’t get the care we needed in Fort Worth, where we were living at the time. However, I had no idea how I was going to con­vince my husband to leave our jobs, house, family, and friends – pos­si­bly even our financial security – to move to Houston so that he could be treated at the MD Anderson Can­cer Center. 

I think I knew on some subconscious level that we would need to be there for ongoing, long-term care. (In hindsight, I must admit that it’s strange how it never occurred to me that so many patients at MD Anderson come in for their appointments from out of state).

I didn’t say anything to him about my concerns, but I hoped that a way would present itself. Daniel had lived in Houston when we met. He left a solid career in the energy industry to move to Fort Worth and marry me. I had no idea if he’d be interested (or able) to return to his former business.

Somebody must have heard me because opportunity knocked on our doors in April of 2012, just a few short weeks later.

We were in Houston visiting his family for a birthday celebration when we learned from a friend that there was a high demand in Houston for people with Daniel’s professional expertise. 

On the car ride home, I told him that I had been thinking about us moving to Houston. I explained that I wanted him to find a doctor at MD Anderson, and that I’d been looking for the right opportunity. I told him that my only “home” was where he was, and that we needed to go.

We decided that Daniel would apply for a job in the Houston area, and that, if he was able to get a solid offer, we would move.

The next couple of weeks were a whirlwind of chaos. The old adage of “Be careful what you wish for” came true for us.

Daniel interviewed and received multiple job offers. He accepted one of them. That’s when we decided to move to Houston. We put our house on the market, and we even had an offer submitted before the ‘For Sale’ sign was in the yard.

Thankfully, everything was falling into place, but it was a difficult transition emotionally. We underwent a total, unplanned life change in a very short time.

Within four weeks, we left my family, treasured friends, and our century-old house. We left successful ca­reers. We left the little Italian restaurant where we had our first date, where I said yes to his proposal, and where we had our rehearsal dinner. And, with poetic justice, on a particularly stormy, grey day, we packed up the car – our four howling cats – and we drove away in the rain. Seeing our house in the rearview mirror, I knew it was the right path, but that didn’t seem to make it much easier.

The real winter storms were yet to come.

Two and a half months later, we met with Daniel’s new myeloma oncologist at MD Anderson. Nothing could have prepared us for that day. There were a dozen buildings and numbered parking lots. There were “sick” people everywhere. My heart broke for them. I saw them in wheelchairs, bony and feeble; watching them take each arduous breath as if it were an exercise of personal will. I smiled and put on my best “can-do” attitude, but I kept thinking “This isn’t real. I will wake up from this dream.”

To make it worse, I saw the looks of empathy that they gave us. You’d see their eyes scanning for the one wearing the wrist band, and they’d look at you with a sympathetic smile, and you knew they were thinking, “Poor thing. They’re so young.” Those indescribable looks of pity covered me all over. To this day, after so many visits there, I never get used to the looks.

In addition to the regular blood and urine tests, the oncologist said that Daniel would need a bone marrow aspiration, along with an MRI with intravenous dye and full skeletal x-rays. Remembering our previous doctor’s advice, I immediately questioned these plans. “Will the bone marrow procedure be done with anes­thesia?” (No, it wouldn’t.) “Our other specialist called this procedure invasive and unnecessary. Why do you need to do this if Daniel has MGUS?” (There is a good chance that it isn’t.) On and on. I felt like a lioness defending her cub.

Daniel put a stop to it. He simply, bravely said, “No problem.”

I tried so hard to choke back tears. It was the hardest of all the caregiver’s lessons: I had to trust strangers with my husband’s wellbeing. They might hurt him, and I couldn’t do anything about it. It was a feeling of helplessness that I still feel today. Their only interest in him was a vocational one, and not based upon a lifetime of love. I simply wasn’t able to save him, and the weight of that crushed me like gravity.

Two weeks later we returned for the results. Daniel was lesion-free, but he was diagnosed with smoldering multiple myeloma. His bone marrow aspirate was positive for 23 percent of clonal plasma cells with trans­located 11:14 chromosomes, and an IgG monoclonal paraprotein (M-spike) of 2.0. He was also positive for Bence Jones proteinuria.

I was in disbelief. It was supposed to be MGUS. I heard myself asking, “Can you re-run the numbers?” It was definitely smoldering myeloma, she said. I began to cry. I hadn’t meant to cry. I had even bargained with my sensibilities that I would never gripe about the dirty clothes hamper again if I could just keep from crying when we got the news. If only I could be like Daniel, “strong like bull.”

It was all a blur after that. The doctor discussed staging and treatment options. Multiple myeloma was “incurable” but “treatable,” she said. I asked myself if that was some semantic jargon that oncologists learn in medical school to make a diagnosis seem more upbeat. How do you “treat” a disease for which there is no known cure, especially when some of the “treatments” can kill you?

We went home feeling the winter storm that started with his MGUS diagnosis five months earlier had in­ten­si­fied. It was a dark time for us both.

I was in a temporary apartment in a large metropolitan city, and I felt alone because my family and friends were all in Fort Worth. For weeks I stayed cooped up in our little apartment. I wasn’t ready to leave my self-imposed cave dwelling (the apartment itself was shaded by trees, and there were very few windows). I spent my days reading about multiple myeloma online, trying to find a role for myself as ‘caregiver,’ and convincing family that everything was ‘fine.’

I’m thankful that Daniel had a new job to distract him during those early months. The mental discipline re­quired by his work must have been a welcome diversion. I knew that he felt sorry that all this was happen­ing to us and that he wondered how long he’d have before he became really sick.

I tried not to think about the future and I counseled my husband to do the same. However, it was unrealistic for either of us not to wonder what the future would bring. Would we be preparing for a stem cell transplant next year? How would I support us on my salary alone? How long would we have together?

I willed myself to wake up from the dream, but I never did. This was our life now, and despite everything, we were grateful to have it.

After a few weeks, our outlooks improved, but I still needed to find a permanent home for us and a new job for myself. In addition, there was an endless stream of doctor’s visits, lab reports, and test results that seemed to punctuate our days.

We had a long winter to go before we’d see spring.

Tabitha Tow Burns writes a monthly column for The Myeloma Beacon. In 2012, after an initial diag­no­sis of MGUS, her husband Daniel was eventually diagnosed with smoldering myeloma. 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 .

Photo of Tabitha Tow Burns, monthly columnist at The Myeloma Beacon.
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19 Comments »

  • Karen said:

    Hi! I can so relate to the story of your husband’s diagnosis. Initially, doctors assumed I had MGUS, but it turned out to be smoldering myeloma. I was terrified, but here I am, nearly nine years later, and I’m doing very well. Sending good thoughts to you both!

  • Mary Dee said:

    Tabitha and Daniel,

    I was told over the phone on Valentines Day, 2012, that I had cancer and I did not hear all that doctor said. I cried harder than I have ever cried, not for me, but for my loving husband Jim. My mother was deceased, my father had been gone since I was 9 years old, but my baby sister had late stage breast cancer, so I was aware of the challenges I was going to face.

    I, too had the high M-spike, and the 1gG myeloma. All this is leading up to this – my first 6 months was a fog of appointments, radiation treatments, blood tests and bone marrow biopsies, and finally my file sent to a myeloma specialist that reviewed my tests, x-rays, biopsy, etc to decide if I was worthy of a stem cell transplant! We thought it was a suggestion as a possible treatment, but later found out that it was a definite as this is the standard for multiple myeloma care! I had several compression fractures that needed the radiation treatments, then the chemo to kill the myeloma so the stem cells could be harvested for transplant.

    I did not have a bad time during transplant! I was sick a few days after the IV chemo melphalan was used to kill the bone marrow with the cancer in it. Then 2 days later, I got my cells back. I was just tired and hated being in bed! I am not a lounging type. I wanted to go back to work! But 100 days had to pass, and yes I lost my hair and was in isolation for 30 plus days.

    This disease is not curable YET, but you can live a full, almost normal, life after SCT (stem cell transplant). I went back to work 2 months after transplant. It is great that you got a specialist involved! You can live with this cancer and with all the new drugs and research, there is light at the end of the tunnel. I can see it in just the past 2 years!

    My husband makes all my appointments with me, so he is aware of all the tests and drugs. But they just recently took me off all maintenance chemo, as I am in full remission. I’m sure Daniel will do fine. This cancer is not like others and realatively new. So there is good times down the road for us.

    Also, MUGUS, can flip to smoldering myeloma quickly, or it can remain as MUGUS. So I feel that may have occurred with Daniel? But never JUST go with a doctors statement, get the second or third opinion!

    Best wishes,
    Mary

  • Debbie said:

    I can relate about MD Anderson. I find it very difficult while I am there to see so many sick. I forget I am one of them myself. Wishing you and your husband strength and good health

  • Pat Englehardt said:

    I was diagnosed with MGUS in June of 2009, also had proteinurea, and a later kidney biopsy showed evidence of amyloidosis. Please check this out with your doctors and if so, early diagnosis and treatment is key.

    Boston Medical Center (BUMC) has an excellent team that does research and provides outstanding medical care and expertise in this area.

  • Eileen said:

    All these stories are so interesting to me because I too have been diagnosed with MGUS, and my “number” is increasing, so I need to go back soon — just dreading it.

    I wish people that write about this would talk about their history–I worked at an airport for 20 years inhaling tons of jet fumes, what was I thinking …

  • Joyce E. said:

    Telling you that your cancer is treatable but not curable is the best they can do. With some cancers there is no treatable or cure. With other cancers there is cure. We have to live with the knowledge that we may have long periods feeling good and off meds — I am going into two years that way — but at some time it will return. I was diagnosed with MGUS in 2003 but it did not progress until 2010 to mm. I did not get a diagnosis of smoldering. I was lucky in not having it progress for this period of time. It is good to hear from the caregivers side.

  • Ray Ranns said:

    A view from a myeloma patient in the UK.

    Some background. One of the main differences in the UK is that treatment is free on the NHS. However, for many years treatment varied for different cancers in different areas and outcomes were very varied (what we call a postcode lottery). This in turn eventually lead to cancer treatment only being carried out in regional centres, with all patient data refered to regional boards to ensure best practice for symptoms of the individual, before treatment starts.

    You were definitely correct to seek a centre of excellence.

    In the UK for myeloma, if the patient is deemed fit enough, it seems that initial treatment leading to a stemcell transplant as soon as possible is now standard, having been seen nationally to produce the best results.

    The purpose of my post is to offer my tips for comfort of the patient from UK practice, which I have not seen on the Beacon, and are twofold. During administration of the melaphan suck ice lollies (I consumed 4) or ice cubes which prevents mouth ulcers that otherwise make eating or even drinking unpleasant during recovery.

    I see many comments about colds/respiratory infections post treatment. In two years I have not had a cold even when my wife has had them. I am prescribed Co-Trimoxazole twice a week, which is low dose ear/nose/throat antibiotic, which has kept me clear.

    I am now 2 years from transplant, in remission, on monthly Zometa infusions and low dose revlimid maintenance therapy. I feel I have been aged 5 years in 3 but otherwise all systems function. Red wine tastes good again and the sun shines.

  • R said:

    Sorry, just too much drama for me…t(11,14) IgG myeloma is one of the MOST favorable FISH determined carotypes (MM) to be afflicted with. Highly treatable.

    Damn Lucky man…considering.

    I’d worry more about the Bus, ….and his crossing the street.

    I do feel badly for those myelomers who have much more aggressive/resistant forms of MM…that rapidly take over your skeleton/Kidneys/spine, etc.

    Those folks truly drew the tough trump cards.

    Happy Holidays, all–regardless of your FISH. Squeeze your loved ones.

  • Steve said:

    Well said, R.

    I guess it’s sorta TMB’s version of “Eat, Pray, Love”.

    And I agree completely with your sentiments regarding those with TRULY aggressive MM … I’ve know 3 who were diagnosed and dead within 6 months … and they were under age 55!

    Let’s remember them this Memorial Day … all those who’ve gone before us in this difficult MM journey. They have given so much to ALL of us!

    Regards,

    Steve

  • Susan said:

    I am a myeloma patient and a female. I too have gone and most recently had been hospitalized directly at M D Anderson Cancer Center, just April, 2014. Every bone marrow aspiration I have had at that hospital was done under anesthesia, so I was surprised to hear they said no to your husband. I told them I wanted a sedated bone marrow aspiration, after the first one in the Montana hospital I go to, did it with no medication. They readily accommodated me, having that option at M D Anderson.

    I hope your move to Houston is great, I was a 29 yr. resident in the Houston area. I chose M D Anderson for the “standard of care” auto stem cell transplant, which occurred in 2013, after my own diagnosis of multiple myeloma in May, 2012. There are no cancer specific hospitals in the state I am now a resident of. I am back in Montana now, I will enter the hospital in that state for a second round of chemo, as I had a regression and have myeloma again with tumors and some bone issues. That is about one year out from stem cell transplant and subsequent immune modulator drugs. A surprise, I may add to me and my oncologist.

    Back in Houston, I now have a 20-year veteran myeloma expert oncologist (plus the Texas stem cell oncologist) added to my physician list down in Houston, along with my Montana oncologist and they coordinate. I know Houston wants me back in their hospital for round II. I chose to stay in my area where I now live to go through round II and good grief maybe more regimens of chemo until this current situation resolves, if possible. Perhaps I will return to Houston, M D Anderson, in 6 months or so. It’s hard to leave home base, so I am letting the next round happen here in Montana. Wish me luck, okay.

  • Nancy Shamanna said:

    Thanks for your column, Tabitha. It is really well written and I can feel the pain and loneliness there after you had to move away for treatments, change jobs and more. Hope all is going better for both of you now. I don’t think it’s easy for anyone to have cancer, but it must be worse if you are a younger person!

  • Ray Ranns said:

    I have had four bone marrow biopsies and they are not done in the UK under sedation (local for the needle to the bone only). The first was absolutely awful and I complained to the consultant when the next was due and insisted on another venue. The pain is caused by the rate of draw of the bone marrow.

    I gave subsequent practitioners a lecture on the subject before I got on the couch on the three subsequent occassions. These have been unpleasant but bearable.

    Hope this will help someone.

  • Tabitha Burns (author) said:

    Thank you all for your insightful comments. I appreciate each of your perspectives, because as we all know, myeloma takes us on a journey; it’s not a one-stop destination. It sounds like you have all been on this journey for a while now, and I am so glad that many of you reported doing well post SCT or with your treatment schedule.

    Mary Dee, I especially want to thank you for sharing your diagnosis story. I think you were able to encapsulate our journey well. At first there is a lot of fear, shock, sadness, even–because we didn’t know anything about the disease, and “incurable” is never a good thing to hear when it comes to your health! With education, research, and time, we would get to a place where we could say “You CAN live with this cancer… and there is light at the end of the tunnel.” That day was a great milestone, for sure!

    All diagnosis stories describe a snap-shot in time. You’re learning about things like risk classification, cytogenic markers, and treatment options.

    I agree with R. and Steve, there was a lot of drama going on then, but like all good things that come with understanding, those fears eventually passed and we realized all the “bright sides” that we had to celebrate in our lives. We are so grateful that he doesn’t have higher risk myeloma! His myeloma is treatable! We know that there are new therapies being introduced every year, and we are hopeful that a cure will be developed soon, not just for Daniel, but for all myeloma patients and their families.

    The diagnosis part of the journey is probably one of the darkest days that anyone faces in their life, but I am thankful that this is a journey, and we aren’t in that place any longer. In future columns, I look forward to sharing the humor that we find in life (like you do so well Karen!), and the experiences that we have as we find healthy, productive ways to deal with this disease.

    Keep strong everybody!
    Tabitha

  • DianaB said:

    Thanks for your well-written and heartfelt article.

    I was diagnosed with SMM in July 2012 (IgG, plasma cells 20-30%, 1.5 M-spike) and have been in the ‘watch and wait’ mode since then. FISH indicated hyperdiploidy chromosomal abnormality. Labs and other indicators have remained stable since then, but I feel like I live my life in 3-month intervals (length of time between oncologist visits). Only treatment so far is Zometa infusions every 3 months for osteopenia.

    I live in Dallas and have considered going to MD Anderson for a second opinion. Although I trust and respect my local oncologist, he is not a myeloma specialist. How did you and Daniel select your myeloma specialist at MD Anderson? There are several that are listed on the website, so how does one go about deciding on the ‘right’ doctor for your case? Is Daniel now undergoing treatment for SMM? I keep asking my oncologist when does one pull the trigger to begin treatment…

    I agree that the diagnosis part of this journey is one of the darkest days, but after I went through the 5 stages of grief (several times) and researched options and prognosis, I am thankful that this was caught sooner rather than later. There is hope in this journey.

    God bless both of you and all who are traveling this road.

  • Annamaria said:

    Again, so beautifully written! Are you sure you are not a famous novelist in disguise? The sick people who “take each arduous breath as if it were an exercise of personal will”, you feeling “like a lioness defending her cub”, you give to all the sad events a dream-like quality. In the end you talk about spring coming, so I assume your husband’s situation is stable, I hope he feels well and the invisible predator stays far from him for many many years!

  • Dan said:

    My Initial diagnosis of MGUS was like something out of the blue for me since I have enjoyed excellent health for almost 66 years. When my family doctor noticed a high protein blood level last August, I was not concerned. By the end of the year following a battery of tests and a bone marrow biopsy, my MGUS diagnosis was quickly changed to active myeloma. I was referred to a local oncology group who were professional enough to realize that myeloma is unique and referred me to Moffitt Cancer Center in Tampa Florida, a two hour drive from my home.

    You and Daniel have made the right decision to seek out a myeloma specialist at MD Anderson, although I was surprised to learn that Dallas did not give you that option. Initially I was a mess mentally dealing with my diagnosis, however I learned to accept my diagnosis and play the ball where it is. My advice … acceptance … you can’t change the diagnosis, but you can change how you deal with it. Lean everything you can about myeloma and it treatment. And seek out the best team you can find to guide you and plan Daniel’s treatment.

  • Linda said:

    Tabitha, you are so strong and have absorbed so much wisdom that will keep you afloat on this new journey. Your husband is blessed to have your support. I was diagnosed in 2010, and my husband is the rock for whom I am grateful!

    DianaB, There are multiple myeloma physicians in the Dallas area, and you can get information by talking to people who attend the North Texas Myeloma Support Group. They are very friendly and willing to share their experiences with others. 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.

  • DianaB said:

    Thanks for the advice, Linda. I will check out the support group for further information.

  • mike dent said:

    I enjoy your column though not the reason you have to write it. I live in Seattle Washington part of the year and Southern California for the other time. I was diagnosed with MM at the age of 53 in 2007, have had 2 auto transplants and other therapies, and just started a clinical trial a month ago. I agree that being part of a research/teaching hospital is ideal, and I’ve said that if I had to have cancer, I’m happy that I was in Seattle and had the University of Washington / Fred Hutchinson cancer program for treatment.

    I wanted to say that after my first bone marrow aspiration, I refused to undergo that pain again, and ever since, I’ve been sedated for the procedure (initial full sedation and now conscious sedation). It makes such a difference! No anxiety, mild discomfort after but certainly no intense pain. I have a nurse friend, and she told me during a difficult second transplant that I was in control and did not have to accept any treatment I didn’t feel comfortable with. I have heeded that advice ever since. I challenge the status quo or accepted treatment now when I feel it’s not right for me.

    Best of luck to you and your husband. I’ve had a productive life in spite of MM, though having retired in 2008 certainly makes things easier! Take care. Education is power!