Leslie’s Story

Site created on October 24, 2023

Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.


No one ever wants to write one of these things but sometimes we must. 


In December of 2022 I was diagnosed with a squamous cell cancer tumor under my tongue. It was in a spot that we have been monitoring for years and finally tested positive. In February, we went to UVA, and they removed the tumor with good margins. In April, I began a 6-week program of radiation which finished the end of May. Spent the summer recouping from all this but still not feeling 100%. In Sept at my follow up CT scan the cancer is back all over my tongue with a vengeance. UVA wanted to remove the whole tongue immediately but we followed up with second, third and fourth opinions. The overwhelming consensus is that traditional treatments are not going to get rid of this aggressive cancer, so we have opted for Chemo-immunotherapy which began at Johns Hopkins in early October. A second round will begin on November 1. 


The hope is that we will reduce the tumor and kick in my natural immune system to fight this cancer. If it is reduced, we will then look at removing the tongue AND the cancer and my body will then be able to heal and fight whatever might remain. Keeping weight on – as I am on a strict liquid diet – is challenging but I have great support from family & friends and great care at Johns Hopkins. I know I had great care at UVA as well, but unfortunately this was bigger than ALL of us expected.


What can you do? It is a frustrating place to be in – as there is nothing any of us can actually do but pray, keep in touch and if you want to drop some food off for my husband – that is most welcome! Not too much – he is only one! As you can imagine – this is just as tough for the caregiver – hard for him to balance all that he has on his plate – the bees and the State of Virginia Veterans affairs do not always take care of themselves, but he too has a great support system at work and in the neighborhood! 


Grateful to my friend Laura for offering to keep this site updated – I know you hate to ask me in particular what is going on so this will hopefully give you the one stop shop for information. Grateful also to my friend Julie who is starting a meal train if that is your jam! Her email is jbericksen@comcast.net if you want to participate. We will be in Falls Church every Tuesday night staying with my folks and stopping by and/or providing a meal for Tom and the two of them while we are there is a great way to support me. And in Richmond - Tom is tired of eating my pureed grits and soups! 


But bigger news than this is – Andrew & Sarah are expecting our first grandchild – April 1! A boy! We are beyond thrilled – I have a lot to live for! Oh yes – and Florida State finally is back in the football scene and my nieces are at big Football schools – Penn State and Georgia. How I love to be distracted with football madness! 


Keep the positive vibes coming and drop me a line someday! Not much of a talker these days but I do love to communication!

Newest Update

Journal entry by Leslie Crabbs

Greetings!

Time for the latest update.   Still dealing with the swelling - the bain of my existence!   But I think it is improving.   My look has gone from Fred Flintstone - a blockhead and neck look, to Shirley McLain in the movie Valentines Day- short hair, round full face, squinty eyes  (If you have not seen Valentines Day yet - I highly recommend it - you get to see love at all stages!) to a Picasso painting - one side not looking anything like the other to it's current state- the duck bill!   This is a classic - I have pouty lips, a full chin and a butt crack cleft on my chin just under my lips.    And this is an improvement.   Such an improvement in my eyes that I felt confident attending a retirement ceremony with Tom.    Wow - was I blown away!

First I want to say that the people there who knew  my situation were kind and welcoming.   But those who had not seen me since we were in the Coast Guard and did not know - they did not recognize me and when Tom introduced me they just stared in shock.    Wake up call Leslie - you do look like a freak!    And while you have improved, you are still not normal.   It was all I could do to keep my head up and soldier on....    They meant no harm, but I really had a re-evaluate my going out in public.    It was bad enough when I scared the little girl at the baseball game with my hacking, but when I saw the look in peoples eyes that I knew....let's just say it rocked me to my core....

The thought of going to the after party had me terrorized.   The last thing I wanted to do was to encounter more looks and whispers, but Tom in all his grace could not see attending the event without me.   We have done this together - and we would continue to do this together - and so I put on my big girl panties and went!   It was a wonderful celebration for a wonderful family and I was glad to share it with Tom.   Moreover, I was glad that Tom still wanted to share it with me - regardless of how Iooked!    I just need to get over my vanity, look at my situation from a realistic point of view and be Ok with not being 100%.   Lessons in pride management....

Today is a better day.   A visit from a friend, completion of our taxes (this is 7 months ahead of last year!), time to cook a good meal for Tom and time to visit with you and unpack my mess of a brain....every day is a learning and growing opportunity if you just take the time to gain a little perspective.   

I am a work in progress....

PS. I published this without my latest Ben Photos = they always brighten my day!   Hope they do yours as well

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