Myeloma, Party Of Two: Room With A View
It’s 2:30 a.m. The night sky is dark and vast, but the myriad high-rises of the medical center glow with hazy white outlines from this 18th floor window. I can see the helipad on the roof beneath me and the blinking blue-tipped antennas that guide pilots to the lifelines below.
My husband, Daniel, is finally sleeping in his bed, directly across from my watchful gaze, but I am too weary to sleep, so I watch, from this room with a view. As I look out, I remember other views we’ve shared: the Eiffel Tower on our honeymoon (how the sunset enveloped the city below with amber-tinged rays that signaled the day’s end); the snow that blanketed Central Park three years ago, making Manhattan look like a winter wonderland, and so many others. I pulled my mind back to the present and looked again at Daniel. Yes, still there. Sleeping quietly.
The 18th floor is for stem cell transplants. In a way, we’re fortunate to be here tonight, since we’re getting a taste of what we can expect four months from now. Our room is larger and more comfortable than I thought it would be. It has several table top surfaces, so I think it will be fine for me to work from as they collect his stem cells and try to destroy his myeloma.
How quickly things change. Four weeks ago, we had Daniel’s routine myeloma appointment. I was hoping that a recent steroid shot for a sinus infection would give his numbers a friendly bump to keep us out of any worrisome waters, especially since we were planning a vacation and I wanted us to enjoy our time off together. I was shocked when we were told that it was time for Daniel to start treatment. “Wait, what?” I thought. “No, this month is his bye-week from the steroids!”
There was a concern about a pattern of Daniel’s decreasing white blood cell count (WBC), which was 3.6 at that time. Daniel’s hemoglobin was around 10, which his myeloma specialist had always said would be a red flag as well. They were ordering another bone marrow biopsy and PET scans, since it has been a couple of years since they had done them.
As the physician assistant continued to rattle off all the things that we needed to do that week, I felt the familiar tunnel effect that I felt when he was first diagnosed. Just like the previous times before, I urged Daniel to do the biopsy with anesthesia, since his bones are so dense and hard for them to penetrate. Just like the previous times before, he refused because he didn’t want the drugs in his system, leaving me with a hard lump in my throat and water filling my eyes that I tried to blink away.
There was a time of some uneasy discussion over the next few days as we waited for the test results to come back. We hoped that if the team recommended treatment, the need for it would be clear to all of us. We needed to feel at ease with Daniel starting these myeloma drugs that come with a loud, ticking time clock.
Thankfully, the answers couldn’t have been clearer. In addition to the low WBCs and the anemia, Daniel had a bone lesion on his left clavicle. We couldn’t avoid it any more. It was time to start treatment.
We learned that Daniel will be on two cycles (approximately four months) of Kyprolis (carfilzomib), Revlimid (lenalidomide), and dexamethasone induction therapy, followed by a stem cell transplant and maintenance therapy thereafter.
However, we didn’t even make it to his next appointment. Twenty-nine hours before I started writing this column, Daniel was beet red in the face. I felt his head and he was burning up. He said that he felt sore and achy all over. I wondered if it was the flu, but he had just come through the flu in December. I took his temperature and it read 102.7 degrees F (39.3 C).
I called his specialist and brought him into the emergency room at the myeloma center, where they performed tests and gave him Tylenol (acetaminophen / paracetamol) to bring down his fever. The tests showed that his white blood cell count had dropped down to 1.6, dangerously low, given that normal is between 4 and 11, and he hadn’t even started treatment yet (which is a common reason for low white cell counts). With the diagnosis of neutropenia, he began getting Neupogen (filgrastim) shots in his stomach to increase his white cell count. We found out that he tested positive for a bacterial infection, and they plied him with antibiotics to fight it. The working theory is that Daniel’s white cell levels were so low that he wasn’t able to fight off the infection. Given his high fever, there is also a very strong possibility that he contracted a virus, even though the viral tests came back negative. They can’t test for every known virus, however, so it is difficult to tell what he might have had.
Daniel’s specialist postponed his myeloma treatment till we know that his infection is gone and his white cell count has returned to non-neutropenic levels, but he is now scheduled to begin treatment this week.
Looking out this window, I wonder what this year holds for us. I’m acutely aware that I want to be better at this than I am. For six years I’ve known this was coming, but strangely, I don’t feel prepared for it now that it is here. Maybe the caregiver never can be.
I hope that I will be “light” for Daniel, even in the midst of stress. I hope that I can remove the worry from my face, and I will exude a calm assurance, so that all he sees is warmth and peace, like the rays upon the river Seine that we traveled so many years ago. Most of all, I pray that he won’t hurt, and that his treatment is successful, and that we have time to enjoy many more rooms with a view.
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.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
Tabitha, I'm sorry to hear Daniel's disease has progressed to this new stage, though you expected this to happen at some point. Your statement "I wonder what this year holds for us" struck me. You speak of the years leading up to this point and how you've handled it (with grace in my opinion). This next stage will be no different. You and Daniel will just respond as you need to as the changes and challenges develop. For me, it was much harder anticipating the treatments then it was to actually experience the treatments.
Mark, thank you so much for your kind comments. You're not the first person to tell me that it was easier for them to begin treating their disease then it was to anticipate the need for treatment. Daniel seems to be doing well - 2 treatments down and 22 more to go. I am keeping my fingers crossed that his induction therapy and the stem cell transplant will go smoothly. As always, I am so appreciative of all the great advice I find on the Beacon! Wishing you the best of health! Tabitha
Tabitha, what a beautiful and moving piece. Wishing you both strength and love.
Tabitha and Daniel,
I have been a constant viewer of this site since I discovered it in January when my husband was diagnosed with multiple myeloma. Briefly, I have two young children ages 5 and 7. Scott, my husband, is currently doing his third cycle of treatment before his anticipated stem cell transplant in June.
During this short period of time, we have gone through many ups and downs as many with the disease will acutely understand.
I just felt the need to reach out to you and let you know that you are not alone in this battle. The love, strength, and support that you show your husband will carry him farther than you know through his journey.
Wishing a quick recovery and a strong start to his treatment.
Tabitha - I have read your columns since we first started having access to the Beacon in 2014-2015. I was truly envious that your husband had smoldering myeloma versus active myeloma. I thought that it would have been nice to have a warning period. We were swept completely off our feet upon my husband’s diagnosis. What I did not realize is the trepidation you must have endured these past few years. That had to be difficult. I am so sorry you and your husband have come to this point.
We wish you well in your husband’s treatment and subsequent stem cell transplant. We pray that all goes well. My husband has done quite well since his stem cell transplant, but it has only been two years, so the jury is still out. We still have a new normal since he is on maintenance therapy and his white count is always slightly below “normal.” But we are eternally grateful to the wonderful people who treat multiple myeloma patients and give us hope each and every day.
Dear Tabitha and Daniel, Although it is sad that the smoldering diagnosis did advance to active myeloma, it sounds like you are in very good hands, medically speaking. Please take good care of yourselves, and I hope that the treatments take effect quickly and reverse the advance of the myeloma. Stay strong!
Tabitha, I don't think we, your readers, were ready for this, either! I don't think we're ever prepared for the actual diagnosis (or progression/green light for start of treatment), even though it's a relief that we can just go ahead and start fighting this thing off with treatment. Just know that you are stronger than you think. We patients know our caregivers are worth their weight in gold. You are our lifelines and we love you!! Your husband knows he is in the best hands and that only adds to the expertise of his medical team and the treatment they are pursuing. I'm so glad you have been faithfully testing and making sure you have been watching so that the myeloma didn't get too far out of control before the start of treatment. But what this disease does to us makes the journey even more "interesting." I am praying that he will heal from the infection very quickly so the treatment can start. We will be following you and Daniel as you continue to write through his treatment. Hugs, Susan
Thank you all so much for your heartfelt comments. I feel so very encouraged by your kind words and reassurances.
Thank you, April and Nancy, for the well wishes! I know that you both have been on this road yourselves, and your columns have given me much needed guidance for what to do to help Daniel when his time came to treat his myeloma.
Jamie, I truly appreciate your "reaching out" to let me know that we aren't alone. The power of human kindness and empathy is so uplifting along this journey for us all, and I can't begin to tell you how much of a difference our support system, both locally and on the Beacon from reader-friends like you, have made in our lives. It sounds like your husband Scott is just a few cycles ahead of Daniel in his preparation for a stem cell transplant. And with your two young children at home, I can only imagine the ups and downs that you have experienced supporting your husband along this myeloma road. It sounds like Scott has an amazing caregiver and spouse, and I wish you all the best for Scott's speedy recovery as well!
Susan, I wondered if readers would also feel a pang of sadness upon hearing of Daniel's start of treatment, and you answered the question for me. I, too, have felt so many different emotions as I've followed the columnists and readers' comments through the years here on the Myeloma Beacon. We've become a cyber family in our own way, and I'm thankful to have you in my life. Thank you so much for your sweet compliments and support!
Dear Tabitha, I am so sorry to hear that Daniel's myeloma has progressed. I can only send you both my love and very best wishes. I am imagining your room with a view, so very different from the views that you were hoping for this year. I hope that, during these tough months, you can look ahead to better times and much better views.
I'm very sorry, Tabitha, that Daniel's myeloma has advanced. I pray that all goes well with his treatment and stem cell transplant. My husband has his 3 year check-up with his transplant doctor next month. It's been a good 3 years; we could rock on 30 years like this without complaint if God gives us that much time.
You'll probably get tired of the phrase "new normal", but that's exactly what it is, and you will settle into it faster than you can imagine. Please keep us updated.
Debra
Tabitha,
As a fellow smolderer, I have been following Daniel's journey since 2013, the year I was diagnosed. My husband and I have come to terms with the proverbial elephant in the room, but hearing Daniel's news makes it all come home again. It saddens me to hear that his myeloma has progressed. As you said so beautifully, we know this day will come eventually, as much as we would like to think we are on the tail end of the distribution and will continue to smolder indefinitely. I treasure each day. I wish for Daniel a successful stem cell collection and a good response to treatment. Please continue to write your informative and heartfelt columns.
Tabitha, your honesty and sincerity about your concerns have served your husband Daniel and all of us so well. Perhaps some benefit from being able to watch and wait has been the learning curve for both of you and the doctors as they understand his individual dynamics in greater depth. The worry time has given all of us many new breakthroughs and better approaches to past treatments. We are further down a much better road. May the best of all there is available be provided to you and your family in this special time of need. Stay positive and take good care of you too. As we wait with our many questions, we can remember there are brilliant young minds busy in research labs all over this great world. They are finding our answers.
Dear Tabitha,
I just read your column this afternoon and wanted you to know I am thinking of Daniel and you as he goes through the treatments and stem cell transplant. Each day is special and can give renewed strength and support for both of you. Wishing Daniel and you good days in this new phase.
Tabitha and Daniel,
Wishing you both strength and peace of mind. I am currently recovering from my second stem cell transplant. I am fortunate to have a loving and supportive husband. Based on our experience, I am certain your love for one another will be as powerful a medicine as the infusions Daniel will be receiving in the coming months. Will keep you in my thoughts and prayers.
Linda
Tabitha -
We have identified with each and every article you have written. My husband has intermediate risk smoldering myeloma (diagnosed about 18 months ago). Since that diagnosis, there is an 'overarching' element of waiting for the shoe to drop, balanced with our focused efforts to fully live until the disease forces a change. We were both very sad for you to read of Daniel's progression, and it was a reminder to us of how arbitrary and painfully fickle this disease is. We wish you both a smooth course of care, and will look forward to your articles. Your spirit and outlook remain very helpful to us who are walking the walk.
Dear Tabitha and Daniel,
While we don't know each other, we derive strength from each other. The stories shared on the Beacon are real and we are all together on this journey. My mother was diagnosed with multiple myeloma and she has not yet recovered from her spinal decompression. I come on here to gain strength and live every 'myeloma day' with hope. It is so easy for one to drift with this diagnosis and one has to be very very courageous to face the day. Hence I salute every member of this community. Each one of you is a beacon. I hope you both have a speedy recovery (I say that as, as a caregiver, I feel the experience is my own too).
Nisha
Tabitha:
I am sorry to hear that your husband has progressed to active myeloma. I will pray that you will be that "light" for your husband. I am so thankful for the Beacon helping us to keep in touch with each other. I am hoping for a quick recovery from the infection and an uneventful stem cell transplant for Daniel.
Jewell
Tabitha and Daniel,
It's been so helpful to read of your journey over these past years. As with all the Myeloma Beacon columnists, your efforts offer insight into the many ways this wacky disease presents itself. As you know, we are each having our individual experiences but still share the fear or threat that seems to constantly hang over our heads and those of our families and friends. Thanks much for taking the time to share.
I am sorry that the start of the “bumpy road” of the cures and the transplant has started. Everyone reacts differently, when I had my transplant my roommate at the hospital barely had any side effects, so I hope it will be relatively easy for your husband.
The positive note is that he is starting in a period of great hope for a future cure. After the induction and the transplant he will hopefully be in remission, and in the meantime the research will advance.
Until then, however, life cannot be the same as before the diagnosis. Your words about the view in Paris reminded me of the many happy times which, like you, I had with my husband when we visited new places, not a worry in our minds. And Dante’s words in the Divine Comedy come to my mind: “Nessun maggior dolore/che ricordarsi del tempo felice ne la miseria/ e ciò sa ‘l tuo dottore” "There is no greater sorrow / Than to be mindful of the happy time / In misery, and that thy Teacher knows” (Dante’s teacher is Virgil)
Thank you all for your kind comments. I just wanted to let you know how much I appreciate you all taking the time to share your thoughts with Daniel and me. We've had a lot going on with treatment these past two months, but rereading your comments just now has given me the fresh encouragement we need for the remaining two months of treatment that lie ahead.
Annamaria, I think your timely quote from Dante's "Divine Comedy" summed it up beautifully. We will focus on the good in these times ahead, and be mindful of the blessing that they truly are. Thank you again for your comments! I really appreciate them.
Tabitha
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