Myeloma, Party Of Two: PTSD
There are times when I wonder how we got here. There was a time before these days when we were newly married. Not even 30 years of age, we were carefree and filled with the optimism born of a newlywed couple. The future was an unwritten book, full of world travels, children playing on vintage harlequin tile floors, and growing old together.
That was nearly 15 years ago. I barely recognize us now. The love remains – and nothing could change it – but these days are not what we planned, and sometimes I feel much older than I should.
I took my husband Daniel to the emergency room (ER) again. This time, he had a 104 degree Fahrenheit (40 degrees Celsius) fever, and the pain in his side had grown from a slight annoyance into an unbearable, excruciating issue. It was his 8th or 9th ER / hospitalization trip since March of last year.
The last-minute scramble should be familiar by now: clothes for both of us (since I sleep on the couchette in his room), toiletries, makeup, Dan’s CPAP machine, his pillow (since the hospital pillows are so flimsy), his noise cancelling headphones (so that he doesn’t here his IV machine beep throughout the night), electronics, charge chords, batteries, and my laptop (so that I can work offsite), all his medications (in case orders aren’t written / filled in a timely fashion), printed instructions for someone to care for our cats, fresh food and water for the cats until the cat’s caregiver gets here, a few granola bars (since they don’t have room service in the ER), and a file with medical power of attorney, living will, and all our paperwork.
This time, Daniel had pneumonia, probably left over from the pneumonia he had last December that hadn’t completely healed. He also had a lower lung pleural effusion (fluid between the lungs and the chest cavity that puts pressure on the lungs like a blister needing to pop), and what could have been a partially collapsed lung. All contributed to the intense pain in his back flank.
We waited in the ER all night. Around 1 a.m., they released us into the pouring rain with prescriptions to fill and a return visit with his myeloma specialist the next morning. Daniel was adamant. He really didn’t want to be in the hospital, so they let him recuperate at home, a more peaceful environment where he was likely to sleep better and less likely to get additional infections. My job was to take his vitals, ensure that he took all his medications, keep him on bed rest, and bring him back to the hospital if his temperature returned.
As I drove us home that night, the dark streets wet with the events of the long night, I felt the weight of every hospital trip we’ve made.
Daniel was talking with a friend of ours. He and his wife had just come through a medical ordeal with their young daughter. After months of stress, failed procedures, and living away from home, our friends were happy to report that the last procedure corrected their daughter’s issue and that she was “well” enough to travel home.
When Daniel asked the dad how he felt, he described not knowing how to feel. He was afraid to believe that it was over. He said it was like he had post-traumatic stress disorder (PTSD), and he was waiting for the next crisis.
I immediately understood his remark. I feel the same way about Daniel’s multiple myeloma.
For the last seven years, we’ve been making trips to the cancer center to seek care for Daniel’s myeloma. Last March, his smoldering myeloma progressed to active myeloma when bone lesions were found in his clavicle and spine. Since then, he has been on myeloma treatment almost constantly. He’s endured induction therapy, stem cell mobilization, an autologous stem cell transplant with four different agents (not just the standard melphalan), and continued maintenance therapy with Empliciti (elotuzumab), Revlimid (lenalidomide), and dexamethasone. Additionally, he’s suffered from side effects, including kidney stones, blood clots, pulmonary emboli, influenzas, pneumonias, and nausea. I can count the number of times that we haven’t been at the cancer center at least once a week – and often several times a week – since last March.
We have had almost every experience imaginable this past year: staff rushing in with emergency response team carts, tough conversations, long days. What we have not experienced is a complete remission. We are still waiting for that day.
Every time we drive into the parking garage at the treatment center, I feel it coming over me, that raw, exposed feeling that lies deep within the pit of my stomach. I wonder if it comes over him too? We don’t talk about it. Instead, we make glib remarks about how packed the garage is that day, or how the newbies don’t know where to park. I swallow down the feeling as we walk towards the building. With each step from the car to the door, I walk into the place of my nightmares. I’ve seen Daniel suffer there. We’ve suffered there. Not just the hassles of fighting over incorrect billing, or waiting for two and half hours past your infusion time, knowing that you won’t get out of there till 11 p.m. and you still have a 30-minute drive home before you can get to bed and get up to go to work in the morning. No, I’m talking about seeing a loved one’s physical pain, nausea, sickness, and misery. That place holds all those memories for me.
And the thing is, no one is to blame. It is what it is. These were the cards we were dealt. So, despite feeling like a shell-shocked survivor, we suit up and return to take a stand in this battle. And we fight against my husband’s myeloma. We do it every week. We do it every day. And we always will. That’s how love wins over multiple myeloma.
Tabitha Tow Burns writes a monthly column for The Myeloma Beacon. Her husband Daniel was diagnosed with smoldering myeloma in 2012 and active (symptomatic) multiple myeloma in 2018. You can view a list of Tabitha's previously published columns here.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
Tabitha,
Such a timely column for me. I’ve been living with active multiple myeloma for 11 years and now active acute lymphoblastic leukemia (ALL) for 2 1/2 years. I became septic last September and was in hospital or rehab non-stop until January this year. During my initial hospitalization for the septicemia, they took my port out because they thought it might be the source of my infection. It wasn’t. Over the years prior to the port, my small veins had gotten to the point where accessing them was almost impossible. Thus the port.
Now I was getting multiple IV’s that failed, multiple blood draws, etc. I dreaded each one. By March, I was so anxious with each impending procedure that I asked my infectious disease doctor when I could have a new port placed. Fortunately he said as soon as it can be scheduled and your oncologist approves. Two weeks later it was scheduled. Now my weekly blood draws and infusions are painlessly done through the port.
That anxiety has lessened, but isn’t gone. I have flashbacks about some of the painful aborted attempts to access shot veins. I’m still bruised from a few of them months later. These bruises are daily reminders of what I endured. So many things in our journeys are ripe for the development of PTSD from our treatments, but we push on.
Tabitha,
Please know that I think of you and Daniel often. I pray for both of you. I know you never could have imagined this life, this new normal. It's impossible to make sense of it all. You are in the ring. Keep fighting!
May Daniel experience complete remission.
Dear Tabitha, so sorry to hear about your continued tough times. It’s so grim and relentless. I hope that you manage some tiny good times together. Sending you both my very best wishes.
Dear Tabitha, I am really sorry to hear about all of the continued medical difficulties, and I hope that soon you and Daniel can get past them and emerge into a more stable health state. You are so organized to pack a bag with all the necessities of overnight stays at the hospital. You even work from there on a laptop computer. I am sure that most patients and caregivers are not even half as organized as you are and that should stand you in good stead too. For PTSD, it's good not to re-live painful memories if possible, and try to 'change the subject' in your mind. That could be with music , walking, reading, another interest, talking with family and friends or just anything that gets your mind off of your worries.
'Look to this day, for yesterday is but a memory and tomorrow is but a dream.' (This motto hangs on a wall at my mother's home.)
Nancy, congratulations on fighting your myeloma for 11 years and counting! You're an inspiration to us all! It sounds like you've been through the wringer, especially with collapsed veins. Goodness knows, there are no shortage of vein sticks in treating this disease. I'm so glad that you have a port back in and that it makes your treatments easier to bear.
Jamie and Marjorie, thank you so much for your encouragement, prayers, and well-wishes. I am so thankful for the many good times that Daniel and I enjoy. When he feels well, we still enjoy going to concerts, restaurants, and church. Plus, he still works full time - another testament to his strength and determinedness. With myeloma, there are good days and bad days. Knowing that we have such a robust support system, both virtual and otherwise, means so much to us. Thank you! Our best to you both!
Nancy Shamanna, thank you for your sweet comment. I agree that it's best to not ruminate on these things. I try to find the positives in any situation, but sometimes it can be overwhelming. I think this would probably be easier if I were the patient. My empathy and concern for Dan can be very difficult as I watch him endure all the hassles and issues that go along with treating his cancer. On the bright side, we are fortunate that all our "good days" make up for the bad ones! We have so much yo be thankful for! Thanks again, and we are wishing you the best, Nancy!
Tabitha,
Thank you for the wonderful, if painful, column. I'm so sorry about your husband's suffering, and yours. Your words really rang true. I'm two years into my myeloma diagnosis, and it is a very traumatic experience, for myself and my husband, and my teenage son. I feel terrible for everything I've put them through. We are all still shell-shocked. I am extremely fortunate for the moment that I am in remission, but I was sent to the ER two weeks ago with RSV, and it was PTSD all over again. I want to thank you for sharing, and tell you to hang in there. It's what I tell myself.
Best wishes, Courtenay
Tabitha and Daniel,
My heart goes out to you. I've only been hospitalized once (with pneumonia and SIRS). It has made me very fearful of getting an infection. I guess this is the PTSD you're talking about. I never thought of it this way. It does make me very careful being around people though.
I pray things will level off with Daniel, and he can begin to enjoy the healing effects of the treatments he's had.
Lovingly, Julia
Tabitha,
I could have written much of your column myself. My husband was diagnosed with multiple myeloma in January of 2005. Following five months of induction therapy he had two autologous stem cell transplants. He was so fortunate to stay in remission for eight years, taking only dexamethasone. He came out of remission in 2012. He has two very long hospital stays of two weeks. Infections come on so quickly and mean a trip to the ER right then. The last one came close to taking his life. He had a bladder infection he didn’t know he had, and it quickly became sepsis. Other things came on in quick succession. God had already worked out that our internal medicine doctor was in the hospital late and he took control and called in two specialists and Gary’s hematologist / oncologist.
Here we are 13 years out and blood tests show he has myelodysplastic syndromes (MDS), previously called pre-leukemia. We had never heard of it.
We have an appointment in June with a specialist to see if he’s strong enough for CAR T-cell therapy. He’s so beat up by the years of myeloma treatment that we’re both afraid he is not strong enough to endure the procedure. Keep us in your thoughts and prayers as we make yet another trip down the road called cancer.
Thanks for the great column, Tabatha. I was diagnosed in late 2010 and can identify with Daniel's experiences. Prayers and best wishes.
Dear Tabitha,
I am so sorry to hear about Daniel’s latest ER visit and the severity of the pneumonia and pleural effusion. I pray that he is doing better now. You and Daniel have been through so much these past couple of years. You are so right about the psychological toll that having multiple myeloma or other chronic diseases has on individuals. I recently lost my best friend to a rare cancer. She fought so long and so hard but being a rare cancer there were no viable treatments. After her funeral, I remained in some sort of fog for weeks not wanting to go anywhere or do anything. Your description of having that “raw, exposed feeling” really hit home. And you are right: no one is at fault. It is what it is.
Thank you for a gut-wrenching column. I'm sorry you and Daniel are going through this. His experience highlights what an unpredictable and terrible disease this is. Some people seem to struggle so much, while others are luckier and return to a near regular life. In any case, the trials and troubles can hit us all at any time.
Tabitha! As I was reading your article, I was thinking "You're speaking my language, lady!"
As a caregiver, it is extremely difficult because our nervous systems have nothing to reconcile with or against, unlike our loved ones, whose nervous systems are anchored in their physical experience, so when you say it would be easier if you were the patient, I think that is why.
Since the shock of my husband's diagnosis in 2012 and the many emergency situations and challenges that have resulted, I also experience PTSD-like symptoms. It has prompted me to seek out tools to calm the nervous system like tension-releasing exercises, yoga, and even karaoke. I had no idea singing engages your vagus nerve, which interfaces with your parasympathetic nervous system. I am thinking of getting a home karaoke system and calling every Friday night "Karaoke Night."
Of course, I'm not always successful in using my tools, like last Friday when I bawled out the pharmacy staff over a red tape issue (not proud of my hyper-aggressive response, a symptom of PTSD). But I have started creating a toolbox I can access when it gets too unbearable, and I always remind myself that curiosity and trauma cannot co-exist. It's impossible in the nervous system. So I try to stay "in the curious."
I love the quote that Nancy shared on her mom's wall because PTSD is also dwarfed when we stay in the present moment. "Look to this day ..." Thanks Nancy, that's going in my toolbox! And I love what you said at the end of your article, which will also go in my toolbox, "Love wins over multiple myeloma." Thank you for sharing.
Beautifully written, Tabitha, and as a fellow myeloma patient, I know the feeling of never being finished with this. As long as we don't have a cure, we will live with this until it takes over and there's nothing more we can do. We don't get to ring that bell in the infusion room, signifying the end of our treatment and hopefully the end of the disease. This cancer runs through our blood, so it's automatically metastatic and it takes over our lives. I literally plan my life around multiple myeloma and all my appointments and drug refills. But it's what we've been dealt and the only thing that doesn't drive me crazy is that I couldn't have prevented it. Even if I hadn't moved to Colorado, I probably would have lived around some sort of radiation exposure and my body just can't deal with it, so it succumbs to the incoming bad stuff and inevitable cell damage. We make the best of it, but at times it just overwhelms us.
I'm so sorry you and your hubby have had a rough year. I am praying that he will respond to treatment and get beyond these bad days and ER trips. I had one myself a couple months ago. I ended up testing negative for flu, pneumonia, and strep, but every time I get that horrid feeling, I run to the ER. Best not to take chances.
You are doing a beautiful job of caregiving, and I know Daniel is so thankful for you. Take care and praying for brighter days ahead!
Your beautifully written article reminded me of the tough times at the start of my own journey: You wrote: “Every time we drive into the parking garage at the treatment center, I feel it coming over me, that raw, exposed feeling that lies deep within the pit of my stomach.” For me, that feeling was mixed with the one of entering the only place where they would take care of me and do everything they could to make me feel better. Ultimately, to keep me alive. I hope things will improve for Daniel, I will be thinking about you both.
Hi Tabatha,
I just want to say that you are not alone in your feelings. I have dealt with a very similar experience to yours. The hardest part is knowing that life will never be the same as it was before the myeloma diagnosis.
I do think that below all the darkness of myeloma there is a legitimate reason for us to be hopeful. Much progress is being made in this disease right now, which cannot be said for many other types of cancer. CAR T-cell therapy is not yet curative in myeloma, but I believe it could be in the next 5-7 years with the right improvements, which is something all of us look forward to.
I also believe that allogeneic transplants are underutilized in myeloma and should be considered for patients that really want a chance of having their old lives back. Patients that choose to have "full" allos with myeloablative conditioning can have surprisingly good outcomes in myeloma if the transplant is done early in the course of the disease, like first or second complete response (CR1 or CR2). The risks are high, of course, but the possibility of cure is a real one.
CAR T-cell therapy can put a lot of myeloma patients into minimal residual disease negative (MRD-) complete remissions, and I have long thought that if those same patients immediately proceeded to allo transplants, we could be seeing a surprisingly high cure fraction for this disease. Anyway, don't give up!
I hope things get easier for you both. You will be in my thoughts.
Thank you so much, Courtenay, Julia, Echo Charlie, Patty, Mark, Jeannie, Susan, Annamarie, and Ian for your kind comments. You have all contributed such wonderful insights. I know that there are many of us out there coping with the ups and downs of myeloma, and I'm thankful that we can be a good support system for each other!
Edwinna, I'm wishing you and your husband the very best as you see the specialist in June for the CAR-T-cell therapy. Fingers crossed for good results!
Patty, I'm so sorry for your loss. I hope that the "fog" is lifting for you in the days ahead, and that the memories you shared with your friend will bring you comfort.
Together we are stronger - thank you all for your good advice and comments!
Tabitha
Dear Tabitha and also all of the others,
Thank you for a beautiful and touching column and comments. This is the experience all of us are facing and then having to deal with in our individual ways. Since my diagnosis, I still feel psychologically shocked, having gone through almost the first year now, I can relate so much. Please accept my empathy and connection to your struggles and triumphs.
Diana
Tabitha, thank you for such a beautifully written column. I think most of us can relate to what you wrote. EJ and I sat down last week and listed all of the things we had been through since his diagnosis and how challenging and stressful they had all been. Even some of the high points like our wedding and renovating our house came with a certain amount of stress! Acknowledging what we had been through and giving ourselves a chance to laugh at the mis-steps, and pat ourselves on the back for making it through was very cathartic.
Best of luck to you and Daniel.
Lyn
Very nice column, Tabitha. You capture how hard it is to deal with an illness without an end in sight, how strong you're forced to be to survive, and how love helps you (and us!) do that. Thank you.
Dear Tabitha,
Thank you for this extremely insightful description of the emotions attached to the multiple myeloma struggle for a patient and their caregiver. It brought tears to my eyes because it was so relatable. I am three years past diagnosis and two years past autologous stem cell transplant. I am now to the point where I am hospitalized less for the multiple myeloma and more for the side effects of the treatments.
One day I did a Google search of my emotional symptoms and up came PTSD. I especially wanted to know why I avoid social contact. When I got home from my five-week stay for my stem cell transplant, I had a difficult time opening the get-well cards from my family and friends. It took an entire month to find the "courage" to be able to open them all. I quit returning phone calls and e-mails and that was not like me at all. There were other changes as well; I guess I learned a lot about how I react in distressing circumstances, and so much of it is not good. I am desperately working to appreciate the life I have remaining and the friends and family who care because I know it absolutely needs to be that way.
My very best wishes to you and Daniel. May you find peace in the love and devotion between you.
Shirley
Tabitha,
You and your husband are in my thoughts. You've eloquently written what so many caregivers feel and go through. We ride this frightening rollercoaster side by side with our loved ones, yet never bail out during the highs or lows. It takes a toll...
I know it's hard to take care of yourself, too (I've been hubby's caregiver for 8 years now), but please try to care for yourself.
Chris M
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