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Myeloma, Party Of Two: My Christmas Gift

By: Tabitha Tow Burns; Published: December 28, 2014 @ 3:57 pm | Comments Disabled

With children’s choirs clad in red and green singing round nativity scenes, eager shoppers filling the stores, and lines leading to knee-weary Santas, I've been thinking: What is the perfect Christmas gift this season?

At various points in my life, I definitely would have answered that question differently.

There were countless Christmas mornings when I awoke wide-eyed, hoping to see the fruits of the “nice list” rather than the “naughty” one.

As a little girl, I adored Princess Leia from Star Wars.  Santa really rocked my world one year with an action figure of my heroine complete with her galactic white bathrobe and cinnamon bun hairstyle.

As a pre-teen, I was ecstatic to open my first Fresh 'n Fancy makeup kit. Part beauty pageant training and part chemistry set, it was a toy that had young girls everywhere making their own combinations of lipstick and perfume.

In high school, I remember getting my first stereo with a compact disc player, accompanied by an eclectic mix of Broadway musical and Jane’s Addiction CDs. Santa was especially selfless that year, given the hours of racket that were to follow.

And then there was the year that my dreamy boyfriend Daniel presented me a sparkling engagement ring and a proposal of marriage.  What a truly perfect gift that was! I had never wanted anything more.

I look back on all those Christmases as amazing times in my life.  Surrounded by my soon-to-be husband, mother and sister, grandparents, great grandmothers, aunts, uncles, and cousins, Christmas was always magical for me - not just because of the gifts, which were delightful, but because we were all together.

As happy as those Christmases were, this year I received a gift even more precious than any of the others.  What I wished for the most this year was to be at home with my husband for Christmas.

A few weeks ago, that just didn’t seem very likely.

For the last two months, my husband Daniel, a smoldering myeloma patient, has been preparing for what he believes is inevitable: progression to active myeloma.  Over the past year, he has observed a gradual rise in his monoclonal (M) protein, decreasing hemoglobin levels, anemia, and persistent nagging pains that could be 40-something muscle aches, but have him worrying about bone lesions.

Normally, I’m the worrier in our family, usually running around like a “caregiver on fire” trying to react my way out of unwanted drama, and occasionally causing more of it in the process.  He’s the steady, methodical one, ready and able to assist in his care when the time comes.

Lately, though, he has assumed a certainty about his health that has made things pretty difficult.

He’s been concerned about the release of the new diagnostic criteria for multiple myeloma [1] and the im­pli­ca­tions they could potentially have on when he should be treated. He’s taking his concerns about progression so seriously that he consulted with his employer to better understand the procedures related to sick leave and short-term disability, if it’s needed any time soon.

During a recent visit, his specialist used the “chemo” word for the first time, which was appropriate to the discussion we were having, but shook us out of any false sense of security we had about how well he was doing.

Then, a few weeks before his appointment this month, a skeletal survey was scheduled. No explanation. No warning. We had nothing but time and our imaginations as to why it was being scheduled now.

With all this as background, Daniel began to prepare me for what could happen at his next appointment. With engineering precision, he laid out his plan like it was a major scope of work. He had compared different initial treatment protocols, and he discussed his plans for getting second opinions with specific myeloma specialists out of state, if needed. He talked with me about financial plans and powers of attorney.

I gently reminded him that we didn’t know what his doctor might say, and that all might be well. He just wanted to “prepare” me, he said, because it was coming eventually. Like it has been throughout most of our marriage, I found it difficult to argue with his logic. After all, he is the patient. He must know better than me how the cancer is growing inside of him.

Instead, I watched, listened, and tried to be strong as he “prepared” me, daily (it seemed), for what could be a Christmas spent preparing for treatment. I thought about one of my fellow Myeloma Beacon columnists who had spent the holidays away from his family getting treatment. I prayed that we would have this Christmas together with our families, and that maybe, just maybe, we wouldn’t have to share it with his cancer.

Finally, appointment day was here. Given all that had led up to this visit, we were more nervous than usual. As the specialist entered the room, Daniel immediately dispensed with the small chat, even interrupting her in his haste to get to the point: “What were the results of the bone scans?”

Thankfully, the tests showed no lesions. She ordered the tests, she explained, because it had been a year since he had been x-rayed, and it was time for them again. She said that we would always do them this time of year. As quickly as that, we moved on.

For the next five minutes, Daniel and the specialist reviewed decreasing hemoglobin and rising free light chain levels, but I didn’t really hear them. I sat there processing, replaying what I had just heard in my head.  She said negative for lesions … Everything is fine, yes? Yes. It’s fine for now. All is well.

What a relief!  My Christmas wish really had come true.  This year, I have my husband home with me for Christmas – no cancer allowed.

Here’s wishing you the best gifts of the season too. Happy Holidays!

Tabitha Tow Burns writes a monthly column for The Myeloma Beacon. Her husband Daniel was diag­nosed with smoldering myeloma in 2012 after initially being told he had MGUS. You can view a list of her pre­vi­ous­ly published columns here [2].

If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .


Article printed from The Myeloma Beacon: https://myelomabeacon.org

URL to article: https://myelomabeacon.org/headline/2014/12/28/myeloma-party-of-two-my-christmas-gift/

URLs in this post:

[1] new diagnostic criteria for multiple myeloma: https://myelomabeacon.org/news/2014/10/26/new-multiple-myeloma-diagnostic-criteria/

[2] here: https://myelomabeacon.org/author/tabitha-burns/

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