Myeloma, Party Of Two: Pitfalls
Here we are again. It’s 4 a.m. and Daniel, my husband with myeloma, sleeps intermittently between interruptions from the hospital staff. His last dosage of Lovenox (enoxaparin) was administered at 2 a.m., and they’ve just come in again to get his blood pressure, temperature, and urine output (which hasn’t changed since the previous interruption).
Last time I wrote such a column, we were on the stem cell transplant floor at the cancer center, trying to understand Daniel’s infection and immunity issues that hospitalized him for two days.
Tonight, we are in the emergency center at the hospital because he has multiple pulmonary emboli throughout both of his lungs. He likely has blood clots in his legs as well, all due to side effects from his induction therapy.
The attending physician said that this a fairly common thing. One of the nurses said that she sees patients all the time with blood clots due to treatment. It didn’t seem normal to me at all. My 44-year-old husband has potentially fatal blood clots in his lungs and legs, and his physicians consider this a “normal response” to his induction therapy.
But that’s not the end of it. In the last 14 days, we have spent five days in the hospital. Two weeks ago, we were in this very emergency room. Daniel had intense pain in his lower abdomen and side. Scans identified distressed kidneys and ureters, and it was determined that he had passed a kidney stone. Daniel has never had kidney stones before, and they do not run in his family. Despite not being a known side effect of his treatment, we can only assume that they’re related to his induction treatment or supportive medications.
Between his treatments, labs, doctor’s appointments, and hospitalizations, I can’t remember a time when we weren’t at the cancer hospital at least half the week.
We are sleep deprived. The hospital is booked, so they can’t put us in a proper room tonight. Dan’s feet hang off from his too short hospital gurney, and the hospital staff come in every hour to “check” on him with their instruments and measures.
I have a stiff-backed chair to sleep in and a heavy heart for company, so I look out the window, and I think about the last few months. I try, but I fail to remember what life was like before this myeloma, with its long, dark night.
It’s ironic that for the six years leading up to the discovery of his bone lesions in February, I dreaded the induction treatment and the stem cell transplant. Tonight, I realize that the treatment is only half the battle. The side effects seem as deadly as the cancer itself.
Dan has always said that having myeloma was like the 80s Atari game of “Pitfall,” where an archaeologist crawls down ladders, runs along swamps, and jumps over water hazards to reach the prize.
In the game as with his myeloma, there is almost always something lurking around the corner. Lately, the safe place seems only temporary. After every success, there’s another alligator, swamp, or trap to stumble over. The difference is that "Pitfall" offers three lives for every play, and I find myself wondering how many close calls we have left.
The truth of it all is that no matter how vigilant I am, I have no control over this disease. I watch that Daniel takes his medication. I make sure that we are on top of his labs before every appointment, and I call his care team at the first sign of a problem. But we couldn’t have anticipated this latest development. It wasn’t even on my radar.
He’s had the symptoms for months now: shortness of breath, dizziness upon standing, coughing, tightness in the chest. But there was always a reasonable explanation for them. His hemoglobin and white blood cell count have been low, he’s been anemic and fatigued, he has had seasonal sinus issues, etc.
I can’t express my thankfulness enough that Daniel’s myeloma specialist sent us to the emergency center today. When we called her with our concerns, she listened intently. She asked him to record his pulse and blood pressure after walking from the bedroom to the living room, and the results made it immediately clear to her that he might have a pulmonary embolism. Untreated, Dan might’ve died in his sleep. There’s no way that we could’ve known that he had blood clots all through both his lungs. It was such a shock.
I tear my gaze away from the window and look at Dan sleeping on the gurney beside me. I know that this ruminating isn’t productive, so I try to focus on what lies ahead tomorrow.
Daniel has just completed week one of cycle four of Kyprolis (carfilzomib), Revlimid (lenalidomide), and dexamethasone (Decadron). His specialist has determined that the Revlimid is likely the source of the blood clots, so they will be removing it from his induction regimen. Daniel will be getting Lovenox injections twice daily (administered by me) as anti-coagulant therapy. The blood thinners should dissolve the pulmonary emboli in time along with any blood clots that he has in his extremities. They are temporarily suspending treatment to give Dan’s body a chance to rest and let the Lovenox get started.
In a week’s time, they will restart cycle four from the beginning, but this time it will only be the Kyprolis and the dexamethasone. After that, he begins a battery of tests, including another bone marrow aspiration in preparation for his stem cell collection and transplant beginning August 13th. August is going to be one tough month.
There’s still the issue of response to induction therapy to consider as well. Thus far, Daniel has achieved the partial response his specialist targets for the stem cell transplant, but we are hoping for a deeper response by the end of this cycle.
In my column last month, I discussed how we might add another drug to his induction cocktail, but in our case, it didn’t look like adding another drug would get us to a complete response, and it didn’t make sense to burn through another line of therapy if it wouldn’t likely yield the results we needed. Therefore, we decided to continue with the current treatment. Unfortunately, the Revlimid is going away now, so I don’t know if it’s realistic to expect a very good partial response from the Kyprolis-dexamethasone combination.
As I ponder these things, I want to be encouraging. I think of what he needs. I think of all the myeloma community who might need a cheerful word; but I am weary and the words won’t come. Dawn is near, and I need to muster my “game face.” But until the sun rises, I sit alone considering the pitfalls that await.
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 .
It is a difficult time for him and you, but he and you will get through this. I'm glad your specialist was on top of the situation and acted immediately. Hospitals are no fun and the stem cell transplant will certainly not be fun. But in the end, hopefully, he will get a remission and some time to heal.
Best to you both, and once you're home and rested, I'm sure it will all seem better. At least for me, being in the bone marrow unit was probably the most for me difficult, being away from my family. But I got through and so will you both.
Hang in there guys. Been there, done that, and have come out the other side. As a carer myself, it's not easy; actually, it's bloody hard, but sometimes I tell myself that there's always someone worse off than us, and sometimes that gets me through. Good luck and take care. Jude.
Tabitha,
You and Daniel are in a hard place. Most of us have been there too. I know I have, and my heart goes out to you. Hang in there. It’s going to get better.
Julia
Thank you for sharing in this difficult time. I wish you and Dan all the best on the road ahead, and hope that the meds do their job.
I remember reading your column I believe 4.5 years ago when my mom was first diagnosed. Ugh, I'm sorry for what you are both going through. My mom was first put on Revlimid, Velcade and dexamethasone, and the first week of her induction therapy, she got a blood clot even when taking a baby aspirin daily. Darn Revlimid. She has been on Lovenox shots for the 4.5 years and thankfully has not had anymore blood clots, and my mom is prone to getting deep blood clots before she was diagnosed. Stay strong, hopefully this is a one-time clot as well!
Aloha Tabitha,
All you can do is to do your best. Our words can't do much other than to let you know you are not alone. We understand your fear and your fatigue. Lean on us, your family, and your friends.
Much Aloha,
Tom
I'm so sorry Daniel has had such a tough time with Revlimid. If there's something I've learned since being diagnosed with this, it's that we are all different in how we respond to these therapies. I pray that he can get as complete a response as possible with the next cocktail of medications, and that you and he can get the rest you need!
Dear Tabitha,
I’m so very sorry for you and Daniel and I send you all my love and best wishes. You describe so well the position that you’re in and the feelings which go with it, but even then, I can’t imagine how grim it must be for you both. I had some horrible lung issues myself and, of all the things that happened, I think that was the most frightening. Sometimes medical people telling you that they’ve seen it all before doesn’t really help much, but the main thing is that they know how to help Daniel get well and get back on track with his myeloma treatment.
Good luck and good wishes to you both from far across the seas.
Dear Tabitha,
You are kind to share all of this with us, and I hope that Daniel and you can get some rest while he is taking a 'rest' from treatment for a while. This is very stressful for both of you, but it sounds like you are in good hands at the hospital. In an ER they see all kinds of emergencies, so that is probably why the nurse said she sees the embolism problem frequently.
I wanted to add that I have taken Lovenox, but at a preventative dosage, not a treatment dosage, when traveling on long flights. My husband injects it subcutaneously in the abdomen area. Although sometimes that really stings, if you or he put an ice pack or even ice cubes in a bag over that area, it reduces pain and bruising. Of course, this doesn't seem really normal at all, and I used to be very squeamish about any sorts of needles, but over time it becomes more routine.
Really best wishes and I hope that everything else falls into place for you.
I like your analogy of 'Pitfalls,' although I haven't heard of that game, but I think of 'Snakes and Ladders' sometimes, a board game we played in childhood.
Tabitha - I wish you didn't need to come to this point. But as a wife with a husband just starting his journey (week 1 of cycle 1), I deeply appreciate your honest writing. My heartfelt wishes this part turns around positively and that the future holds better things. Bright blessings to you and Daniel. Stay strong, we have your back.
Dear friends - I am overwhelmed by all of your kind comments and messages of support. We are back in the treatment area today with only 2 more weeks of induction before the stem cell transplant, and I can tell you that I carry your thoughts in my heart. Your messages affirm that life will return to normal one day and we will get through this. Thank you, Christina, Jude, Julia, HK, Jess, Thomas, Susan, Marjorie, Nancy, and Shirley! I appreciate your support more than you know!
Dear Tabitha,
It's morning here in North Carolina, and I am thinking of your husband and you. Wishing better days and restful nights.
Sylvia
I pray each night that our caregivers will stay strong. Our journey would be impossible without you. One day the light at the end of the tunnel will not be a train. JoAnn
Tabitha,
Thank you for sharing of yourselves as you and Daniel go through this stage. By your willingness to share your journey, it certainly gives encouragement to readers to feel they are not alone in this battle. Your expressions in your writings provide help for others as you are willing to express the hurts and fears you both deal with. Thank you for giving of yourselves so openly, especially when times seem are so difficult.
I am saying a prayer. He has had a rough time, but he is young.
God Bless,
Ron
Tabitha,
We caregivers know that "game face" all too well and share with you the difficulty of putting it on some days. Darkness can be a friend, allowing us our furrowed brows that do not feel forced at all.
Following the journeys of the Beacon community provides so much comfort and information to all of us, contributors and readers alike. Thank you for sharing so openly. Whether at the other end of the country, on the other side of the Canadian / U.S. border, or across the pond, we are all in this with you.
My husband (3 years post transplant) and I send our best wishes to you and Daniel.
The future arrives one day at a time. Find peace in the moments.
Dear Tabitha,
It is hard to explain to others the toll this disease takes on all of us, physical and emotionally. The concept of a treatable but incurable disease that we will each live with, with the associated complications from both the disease and the medications, is at times overwhelming. What amazes me when I read the articles and forum posts here is how courageous and strong patients and caregivers of patients with multiple myeloma are. And how much adversity they can overcome, and how much happiness they experience. I would love to tell you it is going to be better from here on out, but I can't. Because there will be good days and bad days. The stem cell transplant can be a bit rough but at the end of it, when those cells take, Daniel will wake up one morning almost miraculously feeling better. So hang in there.
I can tell you there will be moments of exquisite happiness that I do not think you would otherwise experience without all the difficulties along the way. I can tell you to wait out the bad times, and to take enjoyment in each moment, from the beauty of a full moon in the sky at night to visits with friends and family that are filled with joy and laughter. Most of all, I can wish you a deep and long remission after the transplant with many wonderful years together. Please know we are all rooting for you both.
LS
Hi Tabitha,
I am a caregiver to my mum. I never imagined our roles would turn. But they did. I take peace in chanting. I know the fears too well. But try to overcome them, one day at a time.
Dear Tabitha, you are a strong wife and caregiver. Hang in there, with treatment and time, hopefully Daniel will be improving soon. I too had pulmonary blood clots, during my transplant. I was not on Revlimid at the time, but still in the hospital. I thought it was because I was not getting out of bed enough to walk, but I was feeling so week and nauseous at that time. I am not able to take Revlimid post transplant because of the blood clots. I too injected myself in the belly with Lovenox for three months post transplant. I enjoy your writing, Tabitha, you are in my thoughts and I will be praying for you both. Diana
Dear Tabitha,
We are so sorry to hear what Daniel is going through right now and your anguish at watching him endure these terrible side effects. Many with multiple myeloma experience such adverse side effects, and while it might not sound “normal” to you, in this community it is. Since these are “normal” side effects, the medical professionals are quite adept at treating them. I have lost count the number of times I have taken my husband to the emergency center at all hours of the night for various adverse reactions to treatment. It sounds like you are in good hands though and that Daniel is getting the proper treatment. You and Daniel will be in our prayers for a speedy recovery from this situation as well as a successful stem cell transplant.
All, thank you so much for your thoughtful comments. I am overwhelmed by the number of you who have taken the time to give an encouraging word or vote of confidence. Believe me when I say that I carry them in my heart as we enter this new phase of Daniel's treatment. I feel supported by this wonderful community, and I am so very thankful for your good advice. I know that many of you have been where we are today, and you've come out the other side. Here's to the light at the end of the tunnel, and cheers to you all.
Dear One, So stressful and unnerving and on and on. Quick word to say my husband had deep vein thrombosis on Revlimid during induction therapy in 2006. Maybe because of limited options then, they did not discontinue the Revlimid but added the Lovenox for next 12 months. Here we are almost 13 years later. Life ahead! XO
I continue to pray for you and your family, Tabitha. I think of you often and hope that everything is improving.
Hi Tabitha,
I often think of you and your husband. Like you, my husband is relatively young. I am so encouraged by the comments left by many in response to your column.
Something you said struck an absolute chord with me: "I try, but I fail to remember what life was like before this myeloma." I so know what you mean.
Please know that my thoughts and prayers are with you and Daniel.
To strong health ahead.
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