Pat’s Place: Post-Transplant Let-Down
Last Sunday my wife, Pattie, and I were spending some quality “together time” around the house.
We don’t get to spend as much time together as one would think. Like a lot of couples, we are both really busy. Pattie works full time. I spend much of my time writing, attending medical appointments, napping, or checking my email. Then there’s work to do around the house, errands to run, and obligations to friends and family.
As of this weekend, I had been home from my stem cell transplant for three weeks. Things had begun to get back to normal, but I could tell something wasn’t in sync yet.
I started the conversation with Pattie by sharing something I had been feeling for the past several days: I felt let-down.
It didn’t make any sense to me. I should be feeling great! After all, my long-awaited stem cell transplant was complete—something I had been dreading for years since my multiple myeloma diagnosis.
My recovery was going well. I was home, writing again, and feeling surprisingly good. So what was wrong? What was missing?
I paused and asked how Pattie felt about all of this. “I feel that way, too!” she replied.
Thinking back, Pattie had complained recently about how she was bored at work. And having only moved to Florida a few years ago, I know she misses Wisconsin—especially during the hot summer months. Her once common “I hate Florida!” refrain started up again last week.
But it didn’t take long for us to discover that we were both experiencing a sense of loss.
I’m not an expert on the topic, but wouldn’t a good analogy of this be a woman or couple who are experiencing postpartum depression?
I wouldn’t go as far as to consider either of us depressed. But our sense of loss is real.
It turns out we had both been preparing for my transplant for so long, and now that it was over, it felt like something was missing. Maybe it was the time we spent together planning for the ordeal. Or maybe we missed the focus it takes to make it through something like this.
When you find yourself fighting to regain your health, little else matters. There’s one goal. It's difficult and painful. But a sense of purpose takes over. Experiencing this can be very powerful. Now things were returning to normal.
Identifying and talking through the problem helped a lot, and I think we are both feeling a lot better about things now.
Maybe everything will come together once we learn how well my transplant worked. Of course, that might just create a whole new set of challenges.
More about that next week…
Feel good and keep smiling! Pat
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Hi pat,
Surprisingly, after my SCT, I cried for a month off and on. And was depressed and obsessing a lot.
I think you are right, it was all so intense and then home I started to feel a little lost and the 100 days of waiting was hard. Until, a very good friend chatted with me about how no one knows how much time they have . That anyone of us could go (die) of anything, at any time,and to enjoy the time we have. It really helped when we had that talk and I snapped out of it.
I did get CR, and was very grateful. No maintenance was advised then 2006,
Hope it is a full response for you.
Best wishes
Christina
After my transplant I went through a lot of emotions, depressed one day, thankful for life the next, all over the place! I even started a old nasty habbit of smoking for a little while. (yes i know bad!). I started seeing a councilor and she helped me deal with everything. For me, there was this sense of loss I was sort of mourning my old life, and all my plans that changed the minute I was diagnosed with Myeloma.
Also since my treatment / stem cell transplant all happened so fast I never had a chance to feel all the emotional side of things, so after my transplant when there was all this sitting around getting better it caught up with me, you know? My councilor also shared with me similar insight as Christina's friend. No one really knows how much time, as a cancer patient u just get a bit of a warning!
I am a year post transplant now, back to work, feeling well, but I still deal with the emotional part of cancer everyday, as my dr. says it is the "burden" of being a survivor!
Hello again,
I am 3 days to hospitalization and 4 days to my first melphalan. I so appreciate your column, Pat, as well as the thoughts of those post-transplant.
As I read your column today, I was reminded of the work of Dr. Edward Tronick of Harvard. His work focuses on young children and their relationships with mothers and others. He talks of being in-synch, out of synch, and coming back to in-synch. I liken it to the transplant experience as you describe it. We're in-synch as we focus so much on our health and transplant, we move out of synch as we are post-transplant and feel down and depressed, and then we return to being in-synch at some point - and, as Dr. Tronick notes, this return to synchrony is critical because it is an opportunity to create something new and, to me, that is what life is about - continually creating. I certainly haven't given adequate discussion of Dr. Tronick's work, but it is a reminder to me, as I read your column, that there will be a time post-transplant where I will feel out of synch with myself and others, and I need to reflect and think on my return to synchrony and creating something new
I wish you continued good health! - Susan
As I read this post, I remembered the doctors telling me that I would experience a sense of gradual improvement over weeks, but a patient requires a full year after stem cell transplant to return to "normal." I too was seeking quicker results. Three weeks may a bit soon, but three months made a huge difference for me. Every person recovers differently. I know a lot of the emotional issues began to catch up with me once I could move a little beyond the physical healing. After rebirth, WE are the crying baby and the mother. What you are experiencing sounds about right. Thanks for sharing this, Pat. I am left with some ideas for my next article.
In 2005, I had tandem SCTs, about 90 days apart (I was part of a research group testing the efficacy of tandems). I was depressed during and after the second one. I think what bothered me the most was, having gone through one already, I knew what to expect physically (and I had a great SCT with no side effects, mouth sores, etc.), but I also knew what was coming mentally. I now knew the routine. The hardest part of the routine was watching myself die on paper a second time. At Cleveland Clinic, your blood work was posted in your room and updated every morning, so you the patient could watch the wbc drop to zero and then stay there until the stem cells kicked in and created marrow. I felt sure the SCT would work the second time just like the first, but I remember looking at my zero count and thinking "I am dead." And that was just profoundly depressing.
The other emotions: the "burden" of being a survivor--yeah, I deal with that off and on. For me, it is the sense that the clock is always running. My myeloma has been very complacent for 6 years now, but I never forget it is sitting there in my marrow.
Hello:
During my first SCT in 2008, I lost interest in reading, driving, and other things that I had enjoyed. I felt better when I went home after a month at the clinic. During my second SCT a few months later, I lost no interest, but when I went home again after a month at the clinic, I felt worse physically. I had delayed reactions and sequentially developed other autoimmune problems. It has taken more than two years to recuperate. I earlier had read that length of time and did not believe it. Now I do. But the good news is that the tandem SCT's and prayers to God worked: I am in remission and do not have to return to the myeloma clinic for a year.
Pat,
You have been through a remarkable jouney over the past couple of months and it has been inspiring to follow your progress!
Over the past month I have been going through irradiation of a tumor in my shoulder ( mostly extramedullary they think) and was feeling strong throughout the treatment but now one week post treatment I'm feeling a bit down as I'm now back to the 'watch and wait' mode -- no longer am I actually DOING something to fight the disease. I'd been through this emotional roller coaster last year during the RT to my hip but even though I was prepared somewhat for the 'let down' it still has had a certain impact that I continue to struggle with on some days. Welcome to the new normal, I guess.
Regards,
Steve C.
Sounds like a lot of readers can relate to my let-down. It always helps to know you aren't alone, doesn't it? I'm more concerned about my wife. But she seems to be doing better after our weekend heart to heart...
Wow... what an educational "heads up" post, Pat. My SCT starts tomorrow ( they install the "pipe", and on Monday I get the T-cell stimulator chemo)... I would have thought the exact opposite, that on the other side if this I'd be dancing a jig and singing "I'm free!!!"
But as I think about it, it actually makes sense, and I have already been going through a bit of that: I broke two vertebrae in January that laid me up for months pre-dx. I've had radiation and chemo regimens since March, and have had the past few weeks 'off'... it feels weird)
Your posts have really helped me... keep up the good work!
As the caretaker for EJ I am also finding it hard to move past his SCT (his SCT was June 22). I think it is because we were both so focused on his health for the past year, with a well defined path of the steps that needed to be taken. Now that he is back home and waiting for the final results, I'm a little unsure of what to expect for the next few years. I don't want to waste these years waiting for the other shoe to fall! It's been a struggle to get my mind in a good place.
Pat:
I'm lined up for a transplant this fall. I have been using the pregnancy analogy to rationalize my fears. It will be a few months of feeling lousy. Body will be out of whack. Emotions up and down. Nausea. Not looking or feeling yourself. But, like an pregnancy, it is finite and, presuming all goes well, you can return to being yourself afterward. Biggest differnce is that pregnant women often volunteer to do it again! I never considered the prospect of post-partum depression and I grateful you forewarned me. Forwarned is forearmed.
And, being a former Badger, I can relate to your wife's lament. Who wouln't want to be in Wisconsin?
Best wishes for a speedy recovery.
Ed
I have learned that these feelings of emotional fragility, where every joy turns to seductive tears of profound sadness, are due to withdrawals from dilaudid, oxycontin or whatever painkiller I needed to use during the procedure and recovery.
After I can get off them for a couple of weeks, I'm generally back to my old self, where "tears of joy" are rare and I experience my emotions for what they really are.
So glad to help, John. But I wouldn't worry about it... Maybe you will be "dancing a jig" instead! Besides, you have other stuff to concentrate on. Best of luck!
Christa's Mom, you and Pattie sound like you are going through the same thing. Try not to waste a minute being side or unsure...
On Wisconsin, Ed! You may be surprised how quickly you start to feel better. I was...
Frank, I never thought about the drug angle. Maybe I became dependent on Adivan!
Pat, I can totally relate. After the intense focus of a year's worth of treatment (including the autologous stem cell transplant), it was quite a let down to be done with all of that - and a little scary not to see the doctor EVERY month to check on how I was doing.....not getting all that close attention so frequently seemed strange. I had really gotten used to that routine and the comfort I got from the professionals looking after me so closely. The freedom was daunting at first, but then life just kind of takes over and by some miracle, I don't think of Myeloma first thing in the morning or last thing at night anymore. It's moved a few steps back out of focus, and though it is still in the wings, it's not priority #1 right now.
Eleven years from diagnosis and doing well !!
Jan-
I know! They took my central line out and said: See ya! Check-in at your local oncology office once in a while... Come back in two months for your blood work to see if your SCT worked! Scary!
Lori-
David and I have been worried about you. Everything OK? You were the most prolific caregiver/writer on the planet... Then nothing. Is Dave OK? Pat
It is why I started my blog. I suddenly felt crushed. I was on such adrenaline through it all. We had been in the middle of a relocation and I lost my support of 27 years back east, left our kids in college there. When it was all over Dave had is work and I felt completely and utterly lost, like I'd been run over by a mack truck.
I'm good. Just a bit overwhelmed with life.
Thanks for asking. It's all good, just been incredibly busy.
Pat, As always, thanks for your insights and great writing style.
Pat,
You hit on a good topic as you can tell by all of the responses!
Like Christa's Mom, I had my SCT on June 22nd. I recovered quickly and didn't go through much of an emotional roller coaster. I think it's because I'm preparing for SCT #2 in a week or so. But after that, I imagine it'll feel sort of weird.
I think Steve summed up what I will probably feel....
"no longer am I actually DOING something to fight the disease".
But I picture myself getting up early and exercising and eating right when I get back from my second SCT. But since I'm not doing it now, I wonder why I think I will do it then!
We just sent our oldest child to college last week. Being real busy is my key to fighting this beast and having 3 young children keeps us real busy.
Good luck to you Pat.
Staying busy helps me most too, Stan!