(Keisha’s farewell message to the other students in her UVM End-of-Life Doula class. Shared with permission.)
My name is LaKeisha Lay, I am 46 years old and in 2016 I was diagnosed with a rare cancer called Mycosis Fungoides aka Cutaneous T-Cell Lymphoma. Its a blood cancer that affects that skin. In 2017, I was put on the short list, but luckily by the grace of God and great insurance (I worked for the FEDS) I received a bone marrow/stem cell transplant from a living donor (my sister) and I did survive. I stayed in the hospital from September 1st 2017 to Jan 29, 2018.
I have spent many days in the hospital, but I was never alone. I was in a comatose state most of the time but I did hear my family. I could hear all of their conversations clear as day. I did see dead people and apparently I held conversations too as per my family. I wasn’t doing too well because I heard my mom come in and tell my sisters that the doctors said they should “be prepared.” This one particular night, my dad stayed the night for his shift and he cried so hard, never in my life have I ever seen my dad cry not even at his own father’s funeral. He prayed “Lord, do not take my child, I am begging, If you must take someone please take me instead. I was so tired ya’ll, I was ready and despite what you might think death is not scary at all. It’s peaceful and you don’t necessarily care that you are dying. By that I mean it’s so peaceful that you don’t mind–not even sure you realize that it’s death.
Well, I made it, I left the hospital after almost 5 months! I went into remission in March 2018. I went to the mountains to celebrate, got off the plane, and went to the spa for the first massage that I’d had in a year. Headed to the local steakhouse, got out of the car and literally saw stars. I opened my eyes to the manager yelling call 911. I screamed, “NO!” I didn’t need a doctor to tell me that my foot and leg were broken. So, I ate because as a terminal/transplant patient if you go to the ER you usually do not go home AND you are NPO (nothing by mouth). I was gonna have that steak because it too would be the first in a year. I went after I ate. Sure enough chemo had thinned my bones and my foot and leg were broken and my ankle had a hairline fracture. So the vacation was over and the next 12 weeks were painful and tearful.
In early November, I saw some familiar spots, and I knew the Monster was back. I decided to keep it to myself until after the holidays. The lesions were not multiplying quickly so I knew that I had some time before anyone would notice. I wanted my family to have a good holiday season. Thanksgiving was great and so was Christmas (2018) and I decided that shortly after New Year’s I would let them know that I was no longer in remission and that my chemo regiment would begin at the end of the month. On Jan 14, 2019 at 8am, I woke to 9 missed calls and screaming, my daughter and sister had found my dad deceased. I never got to tell them that my cancer had returned and after that I didn’t want to. Everyone was completely distraught, including me because all I could think of was that prayer he had prayed while crying at my hospital bedside.
I was dying, I recovered, and then he dies. It’s unexpected and unexplained, so I felt as though God or the Universe or whatever had traded my life for his. I didn’t think I was gonna be able to make it, I didn’t do well at all. I struggled all of 2019 and I wanted to give up and quit chemo and just let the cards fall where they may, but I didn’t want my children to feel like I feel. So I pushed through 2020 and as my cancer progressed, I started making memories on purpose for and with my family. I have voice recordings, advance gifts, letters, photo albums. I have outlived some of the dated items and for that I am thankful. My advance directives are on file at my hospital, and my funeral arrangements have been premade and preplanned since 2017. With all that I had experienced and since I’ve been at death’s door a time or two, I decided to research a few things and it led me to the work of EOL Doulas.
It has been pleasure meeting you all and I’m so glad that our paths crossed. I have enjoyed the discussions and I feel that I’m taking away invaluable knowledge. I have gained great insight and I thoroughly enjoyed this course. I’m wishing you all great success with your Doula roles. May God bless you all, wishing you all love and light.
4 thoughts on “My Story, My Journey by Keisha”
In life there are no coincidences I cannot tell you how much this touches me today or I am emotionally with my sister and her daughter thank you so much for sharing this you have no idea how much you’ve made my day improve God love you🙏🏻
So glad this brought a smile to your heart, Kolleen. We connect through sharing our stories in the most powerful of ways. ~Francesca
By coincidence I was diagnosed with Mycosis Fungoides just before Christmas of 2019.I’d developed skin problems about 10 years before which had been diagnosed as ezecma but as it progressively got worse and I didn’t react to the 30 substance patch test they decided I had psoriasis then the tumours came on my left hand leading to an amputation of a finger and it turned out to be neither ezecma or psoriasis.They called me into the hospital and said “have you ever heard of cutaneous t cell lymphoma?”….”no”,I replied,”but I don’t like the sound of it!”By it’s correct diagnosis it was already at stage 2b Mycosis Fungoides the beginning of the advanced disorder.I have just been having Total Electron Beam Radiation so that should hold it off for 6 months or so but I have a nasty feeling it’ll be back.As far as I know it’s not comprised my internal organs although the lymph nodes are swollen.
What a complex journey, Kevan. Wishing you strength, health, and wellness as you navigate the path ahead! ~Francesca