08/14/2025
What is the caregiver's role in the LMS journey?
1) Find a support group
2) Nutrition
3) Ask Questions
4) Awareness/Advocate
5) Love Unconditionally
As a caregiver in 2018 and 2019 when my husband's LMS journey began, I was unaware, uneducated, and had no idea what this journey was all about. In the beginning I looked for any and all information that I could find. Let me just say Google can be your friend or it can be your worst enemy. I would go to the doctor appointments and hear medical terminology I did not understand, and then I would try to note mentally the word I heard so I could look it up later to get a better understanding. But the caregiver's journey is so much more than medical terminology. While educating yourself is a great start, the caregiver is the biggest support system/advocate for the patient/loved one.
As a caregiver, it was my role to make sure my husband ate something several times a day even when his appetite was waning. Nutrition is necessary to make sure the body gets the nourishment it needs. On our journey we were given options for drinking protein shakes verses a meal, although it should not be considered a meal replacement. During my husband's journey we learned that carbs was his friend he loved pasta and would eat it when nothing else would appeal to him. At each appointment, I saw that they gathered weight, BP, Blood Sugar, as well as temperature. It wasn't long that I realized they were using this information to determine the amount of chemo he would receive that day.
Please take notes at home and at the doctor's appointments. There is no such thing as a dumb question. If the doctor says something that you do not understand or you want more of an explanation always ASK! If you have a question about something you observe or if your loved one/patient is acting out of character, write it down and ask at the next appointment unless it is so severe that medical attention is needed immediately.
As a caregiver you are going to be more inclined to recognize things before your loved one/patient says anything. Chemo Brain is real! I noticed many times my husband would just go with what was being said but never really heard what was said. He would say something contradictory to what the Doctor had said and I would have to say that was not what was said and then have to explain it to him again. Its important to not get frustrated because they don't hear what you hear, just redirect and explain.
My husband was a 24 year Veteran of the Army and was proud that he had served this country as an Airborne Ranger. He did 3 tours of duty during his military career. He was at the Burn Pits in 1990 during Desert Shield/Desert Storm. He came home unscathed each time but fought the hardest battle of his life with his own body.
His diagnosis came after a trip to urgent care for a cough that would not go away. An x-ray of his lungs revealed mets and we were told to go immediately to an ER and have a CT scan done. The ER confirmed in March 2018 that in addition to the mets in the lungs that his liver and kidney were also showing mets. We left the ER that night thinking we had Renal cell carcinoma. Within a weeks, after a biopsy done on the liver, we found out he had LMS. We never knew where his LMS originated, but he had external lumps on his arms, back, legs, and buttock. Internally the disease had infiltrated his lungs, liver and left kidney. He was stage 4. He was never a candidate for surgery as we were told he had to many tumors and surgery would prohibit him from getting the chemo treatments he desperately needed. Our Oncologist felt that chemo was the better choice for him. There were good days and then there were many not so good days. He tolerated the chemo fairly well, with the usual side affects - lethargy, weakness, loss of appetite. But he never lost his smile nor did he ever complain! For 19 months he had various chemo's given to him to fight this disease and a round of radiation to shrink the tumor in the groin of his left leg.
This walk was very hard for me to watch a military warrior get defeated. I kept my relationship with God and although I will never understand why he chose my husband, I will continue to praise him for all that he does. I miss my husband, who was the love of my life; but I know that I will see him again one day.
