Myeloma, Party Of Two: “May I Have Another?”
Lately, our life reminds me of one of those 80s movies where some fraternity pledge is getting spanked with a wooden paddle, and the wincing recruit says, “Thank you, sir! May I have another?”
My husband, Daniel, has just finished his second cycle of Kyprolis (carfilzomib), Revlimid (lenalidomide), and dexamethasone (Decadron) treatment for his multiple myeloma. He seems to be tolerating the regimen reasonably well, given the side effects that he could be having. However, we already have seen our fair share of challenges, and they are intensifying with each session in the infusion chair.
First and foremost, each week we hope that his blood cell counts will be within acceptable ranges so he can continue with his treatment regimen. Like many cancer patients undergoing treatment, Daniel is on a neutropenic seesaw. Two weeks ago, his absolute neutrophil count and white blood cell count had dropped too low for him to be able to continue treatment. He was given Neupogen (filgrastim) shots and sent home to lay low, avoid the public, wear surgical masks, and practice good hand washing. He lived in a near-sterile bubble until his white blood cell count had a few days to get back to acceptable ranges so that he could resume treatment.
As a caregiver, I’m learning that these treatment cycles are a well-orchestrated symphony of many, many moving parts. Anyone who has ever had to delay their treatment also knows the added stress that comes with rescheduling appointments to be within the correct timelines once something has shifted. In our case, Daniel has his Kyprolis infusions twice a week. The current plan is for him to complete four 28-day cycles, which include 23 days of treatment and five days of rest. After the four cycles are complete, he will have an autologous stem cell transplant, which will probably be in August.
Within his treatment cycle, there are specific days that are designated for different activities. On precisely numbered days within the cycle, he has blood tests and fast-track appointments with myeloma staff to review his test results before treatment infusions. He also has 24-hour urine and full myeloma blood panels that are for his myeloma specialist, once-a-month oncology appointments to check his progress, and appointments with his stem cell transplant specialist to plan for the upcoming transplant.
In addition, there are specific days in each treatment cycle in which he only takes oral medication (no intravenous therapy). On days 22 and 23, he takes five dexamethasone pills that keep him from having to return to the treatment center for dex shots, since he does not receive Kyprolis on these days. On days 24 through 28, he has “rest days” where he only takes supportive medication, such as Valtrex (valacyclovir) to prevent shingles; baby aspirin to prevent blood clots; Zantac (ranitidine) to prevent irritation of the stomach lining; and magnesium and vitamins D and B12, which he takes daily to support blood insufficiencies.
As you can imagine, if you have to delay treatment for any reason, it takes a lot of patience and follow-up phone calls with several departments and schedulers to ensure that all the appointments are occurring in the correct sequence again. Then the next week might bring low platelets or neutrophils or some other issue that causes the cycle to begin all over again.
But the scheduling is the least of it, of course. The danger of being neutropenic is that one is more susceptible to disease, viruses, and harmful bacteria, because one's immunity is dangerously low. We take it very seriously. The last thing we want is for Daniel to end up back in the hospital, as he was before he started treatment, when he was admitted with a fever and infection of unknown origin.
He has other side effects as well, ranging from lower gastrointestinal issues to jaw cramping.
The worst of it, however, is definitely the fatigue. The smallest activities, like being out of the house for a few hours, really take it out of him. He has noticed this fatigue increasing with each week of treatment. Knowing how exhausted he is now that he has completed his second cycle, I wonder what he will feel like during the fourth cycle of treatment, or during his stem cell transplant. I hope that he will ramp up slowly, and not have it hit him like a ton of bricks. I just tell myself that people survive these transplants every day. It will be hard; but he will get through it.
We’re very fortunate that Daniel’s job has arranged a laptop for him and allowed him to work from home, so he can avoid going in to the office when he is not feeling well or shouldn’t be out in public. Oddly enough, he is able to get even more done from home, since he can work at all hours, which comes in handy on those “dex days” when the steroid has him wide awake and unable to sleep at 3:00 am.
Daniel also has a terrible time with his veins blowing, which is particularly nerve-wracking experience given that he gets multiple IV lines inserted each week. He doesn’t have a port yet, so the IV lines have to be inserted in his hands or wrists or wherever the staff can find a vein. He says that it looks much worse than it feels, but I suspect he is only saying that for my benefit. It is hard for me to watch, and on more than one occasion, I have spoken up and asked the nurse to stop because he or she was digging around too long and it didn’t look like they could get the job done.
This brings me to what may be the hardest part of all of this, and that is the emotional strain that all this brings.
No one can really prepare you for the emotional toll that having myeloma or caring for someone with myeloma takes. My husband and I deal with this emotional stress very differently. There’s been more than one occasion where I’ve spoken up – because someone needed to speak up – and he didn’t want me to do so, or he wanted me to handle the situation more like he would have. There have been times when I’ve felt powerless and unappreciated, and there have been times when he has felt powerless and smothered.
Whether you’re a caregiver or a patient, it’s not easy feeling like you have no control. And to be honest, being in control is a luxury that we don’t seem to be afforded these days. Thank goodness we have good communication skills, and we always find a way to talk out the difficulties that treatment is imposing upon us, but what choice do we have? The alternative is to not take the treatment, which of course is no option at all! We know how fortunate he is to be able to receive this treatment!
So it is with this sense of awareness and thankfulness that we approach this time in our lives with equal parts of love and hate: happy that he is getting the life-saving care he needs, and resigned that it is taking its toll.
On the bright side, this won’t last forever. After this fall, induction therapy will be behind us, and by next spring we could be globetrotting like we did when he was smoldering.
For now, we’re like the pledges from the movies. We arrive each week asking, “Thank you, sir! May I have another?”
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,
Bless your heart. I (we) know what you’re going through. And the transplant will be a challenge too. But, you’re right, after recovery (and it can be slow), there’s a time of peace. Blessings on both of you.
Julia
Praying that Daniel's white count can remain high enough to continue his scheduled treatments. That is an all-too-common problem cancer patients have and, frankly, it sucks! Even though I am on a maintenance drug, my white count is still lower than normal, and I am very careful about keeping my hands clean. It disgusts me how so many "healthy" people just don't pay attention to the passing of germs when they don't wash their hands!
Stay strong and we are all rooting for you both!
Dear Tabitha, thanks so much for taking the time to write your column in the midst of this difficult time. Your column brought me much closer to the way things must have been for my husband Graham when I was having my induction treatment. I feel for you both and send my love.
One step at a time, Tabitha!
Tabitha - Thank you so much for your update. I was broken-hearted to read in your last column that Daniel's myeloma had progressed to this stage. I understand how difficult it is to walk the fine line of when to speak up. Daniel is fortunate to have you as his advocate as there may be days when only your voice can express the concerns that you both have for his care. Many times, our regrets are for that which is left unsaid. Praying that all of your concerns are heard with the love intended. Love and hugs to you both!
Julia, Susan Marjorie, April, and Michele - thank you all for your comments!
I appreciate each and every one of you and take your words to heart! I feel so fortunate to have such "experienced" and wise counsel as we enter this new phase in Daniel's myeloma. I especially thank you for your well wishes, blessings, and positive thoughts and I will carry them with me as we return to the cancer center today to meet with Daniel's myeloma specialist. Hopefully, we'll find out that his treatment is working and he is strong enough for treatment cycle number 3 next week. With my fingers crossed, I'm like an 80s game show contestant thinking: "No whammies, no whammies, no whammies!"
Dear Tabitha, thanks for sharing about Daniel's induction therapy. Some of it seems familiar; the veins on the backs of my hands started to collapse with Velcade. The hands were used alternatively. Also, I would become neutropenic sometimes when on Revlimid after the stem cell transplant. I would take a week or two off of treatment to allow my blood counts to recover. I didn't mind that too much since it allowed me more time to rest up before another cycle of Revlimid. With the stem cell transplant, I had a Hickman catheter inserted, which helped my veins to recover.
When I saw your quote, I thought of Oliver Twist in the orphanage saying 'Please, sir, may I have some more (soup).'
After a while, you get into a routine and hopefully you both will be able to relax a bit about all of this out of the ordinary stuff happening to you! Good luck with everything!
Tabitha, well done. You described the stressfulness of these procedures and the anxieties involved very well. I'm sorry you are both having to go through this. I know that my wife often acted as my advocate also as I was going through active treatment. Daniel may be the one with multiple myeloma, but you are both affected by it.
I think it does help to make light of the situation and to try and find some humor in life – it helps ease the pain and worry. Even now when I go in for my lab work and checkups, I tell the staff, "I'm back; you guys can't keep me away!" or "How are things today in the Fun Center?" They usually chuckle, and find that helps me find some peace in all of this very serious business. I've also told the infusion center staff, "I'm sorry, but my wife says I can't have cancer any more, so I may have to stop coming."
Keep those positive thoughts up, help each other out, listen carefully, and learn all you can. It is your husband (and your) life, and you decide what direction you want to go.
I hope your appointment went well yesterday, and wish Daniel and you all the best in the stem cell transplant.
Hi Tabitha,
As you might remember, my husband Scott is just steps ahead of your husband. He is having his transplant in a little less than two weeks. I know what you are going through with the setbacks, but it does get better, although I do not kid myself for what lies ahead.
Stay strong! Thoughts, prayers and good thoughts are with you and Daniel.
All the best,
Jamie
Thanks so much, all for your kind comments!
Nancy, the Oliver Twist quote made me smile! Thank you for sharing it. At least we're doing much better than that poor kiddo!
Anton, you are so right about the jokes. We try to work them in where we can. When the nurses leave his room, they usually say something like, "I'll be back in 30 minutes to check on you." I jokingly say, "We'll be right here – unless we get a better offer!"
Jamie, I'm so glad to read that you and your husband Scott are doing well. It's a strange thing to have in common, but knowing that y'all are hanging in there helps me know that we can too. Thanks so much for the encouragement, and know that I am sending you lots of well wishes for a SUCCESSFUL stem cell transplant in the next few weeks. Take care!
Thank you again,
Tabitha
Good luck to you and Daniel. It does get better.
Tabitha,
I feel fortunate to have found this site. I was diagnosed with multiple myeloma in Febuary. Since then I have had 2 rounds of Velcade, dexamethasone, and Revlimid. It's been a heartbreaking experience for my caregiver husband and family. Your column has given me a greater insight into this world of multiple myeloma. Thank you, Pam
Hi Tabitha - I am sure your column brought back lots of memories for those of us who are just a few years ahead of you in this multiple myeloma journey. Your are correct, induction therapy can be a real challenge, especially trying to keep that white count within acceptable ranges. I know this might sound strange, but what Daniel is experiencing sounds “normal” to us. Even though my husband is minimal residual disease negative, we still take enormous precautions to avoid getting sick, avoiding crowds, avoiding sick people, wearing masks on the plane, etc. Because he is on maintenance therapy with Revlimid, Empliciti, and dexamethasone, his white blood count remains low.
We wish you well as you continue with Daniel’s induction therapy and pray that his stem cell transplant will be as tolerable as can be.
Thank you for your thoughtful comments, Nisha, Pam and Patty.
You're all right that this is temporary. My sweet grandmother used to say, "And this, too, shall pass." What a wise lady! We are just going to take Meme's advice and hunker down and hang on! Thank you again for your encouragement.
Tabitha
Hi, I pray everyday for families going through these difficult times. And when that time came for my husband, March 22, 2018, 41 years old, I prayed harder. But I hope all is well with your hubby's counts, and his journey is peaceful. We are on the same track as you are. And your story sounds so incredibly like mine. I almost felt I wrote this one. So, great luck to you both. Hang in there. We are! And don't forget to take a break for yourself. You gotta be well enough to take care of him.
Progress toward fundraising goal
for all of 2020:
15%
For more information, see the Beacon's
"2020 Fundraising: Goals And Updates" page