November is National Caregivers Month

LMSDR honors our leiomyosarcoma caregivers! We asked our LMS survivors to tell us why their caregiver was special.

By Jane Heinrich

My sister Kay Anderson is our family angel.  Of the five of us in my direct family, four of us have had cancer of some kind. My sister died from breast cancer after many years of battling it. My Dad died from multiple myeloma (after a two-year battle). My Mom died from cancer of gynecological origin three months after diagnosis.

In April 2019, I was diagnosed with retroperitoneal leiomyosarcoma. My sister has been a Godsend and an angel to ALL of us. She has gone to many doctor appointments, sorted through all the medical details, been present during chemo treatments, sat in waiting rooms waiting for surgeries to be done, gave moral and physical support, was present at the deaths of three of our family members, and helped them in their passage to their eternal home in heaven. She also traveled from Canada to Minnesota and Washington to be with us when we needed support, and was and is present via skype and phone whenever the need arises.

I wish everyone could have a caregiver like Kay. She is empathetic, loving and fully committed to helping us. It is especially hard for her since she is the youngest and has had to give up a lot of time with her family in order to be here for us/me. I love her so much for who she is.

By Karen Schultz

My husband Bill Schultz is my caregiver. He has been a Godsend to me. He has taken over all the cleaning and cooking. He’s my ride to every appointment. He still works, but is there for me every step of the way. He has cried with me and makes sure I need for nothing. He is my voice and my ears for everything the doctors say. He continues to love me unconditionally, through losing my hair twice and losing weight, he still tells me how beautiful I am all the time. I have been truly blessed to have him in my life.

By Sue Berry

My husband, Bill, has been my best friend for more than 50 years. He has stayed by my side every step of the way since I started this journey.

He has kept a record of my side effects. He accompanied me to every appointment until Covid19 interfered, and now listens in remotely. He is always willing to bring me whatever I need: food, a drink, a blanket and my cat (when she needs her medicine). He has taken over the care of my cat, since I started chemo. He lets me sleep late, and still makes my breakfast. He took over doing the laundry because I have trouble getting into the basement with the cane I’ve needed since my first surgery.

He does all this without complaint, and still gives me spontaneous hugs and kisses. I can’t imagine going through this without him.

By Angela Wetzel

My husband is my caregiver. I was diagnosed 6 years ago, and he’s been with me every step of the way. When I’m not feeling good from treatment, he keeps things going around the house. He gets groceries, makes dinner, drives our son around and he always asks if I need anything. Slushee Cokes really taste good to me and settle my upset tummy, and he will get me one from the gas station whenever I want. He is calm and prays when we have to go to the ER, even though he must be screaming inside. I know it’s hard for him but he never complains. He’s always strong, and his arms are always wide open for me. He understands me like no one else, and I am so thankful for him. I would not have made it this far without him. Thank God for caregivers, especially Jerry Wetzel!

By Vicki Strong

Sometimes caregiving takes a village.

When I was diagnosed with LMS, my husband Bruce had just completed 19 months of treatment for acute myeloid leukemia, which resulted in 160 days of hospitalization.  A layoff during his treatment meant that he had just started a new job.

When I told him about my diagnosis, he said:  “Thank you for how you cared for me. But, I am in a new job, I am exhausted, still feeling sick, and I cannot be there for you.  I am sorry. I love you, but I can’t.”

That was the greatest piece of caregiving ever!  I sure didn’t look at it that way when he delivered it, but when I began to whine to my friends about it, my friend Linda said:  “That’s what girlfriends are for.”

After my jaw transplant, I came home with a feeding tube, a tracheotomy, an immobilized leg where they removed the fibula used to rebuild my jaw, and a skin graft that had to be dressed several times a day. (I was considered too high needs for a rehabilitation center!)  My husband spent the first three hours I was home scrubbing the laundry room, because, he said:  “I know how to do that.  You, you terrify me.”  I finally had to text my sister “He’s killing me!” to get her to come over to help track down trach and tube supplies the nurse had forgotten to have delivered.

Next day, the village moved in.  My other sister (a cosmetologist!) held several group sessions on how to clean my trach and administer tube feedings.   I was cleaned, dressed, tube fed, and always had a ride to appointments. My gardens were prepared for the growing season, my toilets were scrubbed, laundry done and floor clean enough to eat off.  And when my husband came home from work, the refrigerator was magically stocked, dinner was ready and his lunch for the next day was packed.  Best of all, people took our daughter to their homes every single day so I could rest.

There was always someone there for me, to answer the phone, receive deliveries of food that just kept coming, and send out thank yous.  I was prayed over, chatted to (with the transplant, speaking was impossible), entertained with books, comedy movies, and field trips to the zoos and parks when I could finally get out.

It took a lot of humility on my part to accept all that care, and I will forever be “paying it forward” as a result.  And I owe it all to my village, but mostly to Bruce, who taught me that caregiving is not always in the doing, but in the loving.  Which includes being honest about our fears and limitations and setting safe boundaries.


 

Read about Lisa Kessler Griffin – 37 years of LMS Caregiving

If you are a caregiver of a patient with leiomyosarcoma, please join our Facebook group – just for caregivers!

LMSDR Caregivers Facebook Group