Hey everyone, Lisa here….it has been a while since you have all heard from me. Most of the people that read this blog are on facebook and read the updates that Sylvia has been religiously posting throughout Shari’s transplant and her journey pre and post. It is hard to write about something that isn’t really ‘happening’ to you, so I thought it was better to take a break and wait until I had something personal to write about.
As you may or may not know, Shari has had a very difficult time eating since the transplant. It has not been an easy time for her. During her weekly visits to PMH, she had discussions about the fact that she has GVHD (Graft vs. Host Disease). I am not going to try to explain it, but you can google it and you can read about how it is not all bad, and it is common in transplant patients (http://www.marrow.org/PATIENT/survivorship_Ed/#)
One of the symtoms Shari was/is having is the inability to produce saliva. That makes it almost impossible to eat. I didn’t know this at the time, but at the James Taylor concert I bought Shari cotton candy, which she loves. You all know that the minute cotton candy hits your month, it melts. Because she had no saliva, the candy stayed the same consistency, and didn’t melt in her mouth. It freaked her out.
Shari went down to PMH on June 1st and was finally admitted to treat the GVHD with IV meds and steriods. It really was the best place for her to be. Get the meds she needs, get the rest she needs and the ability to build up her strength and her ability to eat again.
I have been down to visit a few times. Each time I visit I ask what I can bring. When I went to visit before my dad’s party, her request was a piece of cake by Roberts cake. It was hard, but I saved her a small piece of cake. On Monday (Jun 7th) Shari asked me to bring a pizza sub from Subway, with extra sauce. I thought, wow, if she wants that, I will bring it. So, when I got there, I re-heated it, and she could take ONE bite. The bite was the size of a pea. The sub was too dry for her mouth. The cake on the other hand, melted in her mouth, so it was so much better for her.
Fast forward to yesterday. I was planning my route downtown and Shari asked me for a special treat, McD’s. So, off I went to PMH and searching for a mid/downtown location of McD’s to pick up the food. I didn’t have much sucess, so the french fries were cold and not enjoyable….BUT Shari was able to eat a 1/4 of a hamburger – SUCCESS!
She told me that she was going to be able to go home for the afternoon and evening. So, since I was there, I waited for her to finish her meds and ‘sprung’ her out for the day. On the way north Shari told me that should would love something from Baskin and Robins, so off we went to have ice cream, which I can say, she finished almost ALL of a kiddie size scoop in a cup. FANTASTIC.
Later that night, I met up with her, Mike and Sylvia at the Fish House for dinner. Let’s forget the service, which was less than stellar, it was about Shari, and the fact that she had some clam chowder, some bread, a couple of bites of caeser salad, some baked potato and LOBSTER!!
The dinner was more than just eating. It was this rare opprotunity to talk openly and candid with Mike and Sylvia. It was a chance to get to know more about the family that I have spent the last year with them and all their ups and downs of this journey that was handed to their family. Time to talk about how to hopefully begin the mental and emotional healing now that the physical healing and the cancer is now gone.
I am glad that I have seen the little milestones that Shari has gone through since being at PMH this time. I know that she will continue to fight, eat, grow stronger every day. I don’t know how one does that, but the key is one day at a time. One bite, one spoonful, one day at at time.
You will get there Shari, I know it.
I will see you soon!
The Lisa Chronicles 