When I thought about breaking my silence and sharing my story about MS and HSCT, I wasn’t just thinking about those who suffer from chronic illness. My family and friends have been deeply affected by my diagnosis and treatment as well. They offer assistance and support and rearrange their lives and most importantly, bear witness to the ups and downs.
As I said in my mom’s first guest author post, when I’m sick there is no one that brings more comfort than my mom. It’s ingrained since childhood that she will be there, helping me through physical and emotional turmoil. In the past month that I’ve been home, my mom has done my laundry, changed my sheets, cooked me countless meals, helped me stand up from the toilet, helped me out of the bathtub, ordered supplies and assistive equipment, made me laugh, provided companionship and wiped my tears as she planted a kiss on my big bald head. Words are not enough – they never are – but suffice it to say she is extraordinary.
I hope her words helps other moms, parents, friends and caregivers navigate the emotional minefield and unpredictability of recovery and healing.
My observations on recovery
Phase one for me was chemo. Phase two was stem-cell transplant. Phase three is recovery and we are now in the thick of it as well a being in it for the long haul. The medical staff often reminds us that recovery will take a year. I might know that intellectually, but emotionally I want some quicker results.
There was an order and a medical process to what came before, but I’m not quite sure how to describe or explain something that is so completely unpredictable.
1 step forward, 5 steps back
The most difficult hurdle so far is the backsliding that has occurred from previous progress made. Healing is NOT linear. In the first two weeks home, Carolyn’s numbers were great and her mobility improved from her time in the hospital. Her energy and her appetite were buoyed by steroids. Suddenly, and without rhyme or reason, the weekend of July 30 she awoke with shooting leg pain, leg spasms and the return of the paralysis she had suffered after her first round of chemo during the stem cell harvest. Not only could she not move her legs but they could not support any weight making movement anywhere excruciating.
As you can imagine, this is physically exhausting. I intellectually understand MS, but it’s a strange thing to witness when entire muscle groups cease to work overnight. Her wrists took on the weight of her body (which is not good) just to stand up enough to get her on a stool or to use her rollator. Maggie ordered a stool, with wheels, to be delivered that same day so we could scoot Carolyn to the bathroom. Necessity is the mother of invention after all and Maggie gets it done.
Tired doesn’t cover it
There are various means of coping with being tired. Most people can take a nap or rest by just putting their feet up for a few minutes but that isn’t the case for Carolyn. When your body is trying to recover from a bone marrow transplant, being tired doesn’t cover it. There are so many variations across the spectrum of weakness, fatigue, tired, exhausted or just plain sleepy. There is so much happening under the surface, within her body, unseen. This recent setback was mentally and physically damaging.
Sleep is great. We all know any type of recovery takes quality sleep. Following a transplant, the patient is given diminishing quantities of steroids for several weeks. Although 8 hours of sleep would be great, the steroids make that nearly impossible. So the person who needs the healing and restorative powers of sleep the most finds herself unable to grasp its benefit.
Taste buds annihilated
Some patients lose their appetite. That hasn’t happened with Carolyn, but her sense of taste has changed. Her history of food, cravings and how things should taste is gone. In its place are vague similarities to food or simply an accurate texture sans taste. Even water tasted wrong. She described it as dirty pond water with a metallic after taste. Despite this radical change in taste, dehydration is a serious concern. To combat this she drank more Gatorade than when she used to play competitive softball and added Waterdrops to plain water to enhance the flavor. Even with these efforts, she was still dehydrated requiring IV fluids at her follow up appointments.
Towards the end of her steroids, Carolyn wasn’t getting the hungry feeling. Regardless, it’s still vitally important to eat. Eating smaller meals more often seemed the best way to keep nausea at bay. I would prepare something and bring it to her and she was continually surprised at not only eating it all, but enjoying it when there was no indication previously that she wanted food.
Get the items that make life easier
Carolyn doesn’t want to be a burden and doesn’t want to buy things she doesn’t need. But who could have predicted the backslide to paralysis and the loss of having weight-bearing legs? No one. But there exists countless medical devices and supportive equipment to make her life easier available for next day delivery.
While she was struggling — mentally and physically — with this recent flare, I took to Amazon. I purchased a shower chair and a chair that attaches to the toilet providing a higher base as well as arms on the side. The toilet attachment allowed her to stand with greater ease in a safer fashion and to place weight on both legs rather than toggle off balance to her stronger side. The shower chair provided safety as well as a sense of normalcy and independence to a daily task I think we all take for granted.
We both remarked that these were items that were just smart to have and perhaps Carolyn shouldn’t have waited until they were needed to have them on hand.
Who knows why
Bottom line is recovery is unpredictable and it can be different for each person. What has not changed and makes all of it bearable, is the support of her doctors and transplant team. I’ll remind you that Carolyn is the 10th patient to undergo this procedure at Cleveland Clinic. Despite performing over 200 transplants a year for patients with cancer, they have a slim repertoire of what to expect in the MS community. They listen to the patient and then come up with a treatment to help get Carolyn back on track by treating her symptoms — but there aren’t answers per say.
We’ve had to grow accustomed to not knowing or understanding the why behind the ups and downs of recovery.
Free patient support services
When we were at the cancer center for testing and appointments last Thursday, we also had a marvelous time trying on wigs. It was a lovely diversion to giggle and laugh between labs and appointments. Cleveland Clinic has a foundation that supports their wig boutique and supplies patients who have lost their hair with a wig and/or head scarf free of charge. This is just one of many patient support services available. Heather at the wig boutique was just great and made the whole event feel like a trip to the salon rather than a chore. Carolyn also now knows that she just may need to be a redhead someday, but maybe not a blonde.
If I could tell her one thing
I know there are days when she doesn’t feel it – but she is so strong. I know she will keep pushing through the obstacles and we will both try to be patient… even if it takes a year.