Update

Its been well over a year since I had throat surgery to get rid of the viral polyps growing on my vocal cords and the throat area above. But it is time and my platelet count is now steadily above 40,000. It bounces a lot between 45K and the high 50Ks, and even reached 62K yesterday when I went in to have my monthly IGG treatment. While there, my oncologist also said that I just pulled a muscle (and I am hoping he is right) and it would take up to a month to heal. Well its been two weeks, so by the time my throat is healed up, my back should be as well. All good things!

Throat surgery is set for May 19th at 7am… lol… clearly the person making up the schedule is unclear on how long it takes to get a platelet transfusion. My Doc (transplant doctor) said I could probably go without, but my ENT (throat) doctor doesn’t want to risk it and is keeping in the hospital overnight for observation. Caution is always a good thing, especially in my condition. I have gained 10lbs over the past month, although it is probably just fat. But I will take fat right now. Everyone needs some fat in their bodies, as it cushions joints and certain tissues and organs. And I had none left, which is why my body started burning up my muscle tissue.

photo 2 photo 1
(The red and purple splotches are bruises due to low platelets. And you can see how thin due to muscle loss.)

I am looking forward to talking again, even if it is for a couple of months. But who knows… between the new antiviral medication (to fight the HSV infection) and lowering my steroid meds, my donor cells just might kick the throat virus’ ass and send it into dormancy. My ENT doc thinks its a possibility. We’ll have to wait and see…  lol… everything about my post transplant is wait and see.

Bottom Line

I am no longer at ground zero, and it will be a while before I get back in the water. Physical therapy is helping, but is a slow process. The HSV infection is still active, but the new med is helping. My right eye is almost clear of it and my lip area is much better. So we will wait and see what happens until I see my Doc and the dermatology doctor on June 2nd. I will still have to fight off viruses and deal with the symptoms of GVHD, but I feel like my body is ready to make some positive gains. We’ll have to wait and see.

wait-and-see

The Truth is…

Sometimes I feel like something I read the other day by Elana Miller:

I’m lonely. It’s not so exciting anymore that I have cancer.I see people around me returning to their normal lives, and I don’t get to. I wonder if maybe I have to walk this path alone. If I didn’t feel so sick, and therefore emotionally hypersensitive, I probably wouldn’t care as much as I do.

I can’t explain it much more than that. I know everyone still cares. But sometimes it feels like people are getting tired of hearing our stories. It was all very exciting in the beginning and everyone was GO, GO, GO and Fight, FIght, FIght! And now it is just Meh. And I think that if people do think about us, they don’t know what to do or say; so they say and do nothing, and it feels like we are floating around through this alone. It just isn’t interesting anymore. And I might agree. I know most people think this, cuz I do, I wish I could just say, “Let’s get well already, okay? We had the adventure and I am ready for this ride to be over.”

P.S. The “I” in this is really “we.”

 

2 Comments

  1. Linda Senenfelder

    We are still interested in how you are doing. And care when you are down. Keep up the good fight. It will all turn out good in the end. Much love , pixie dust and prayers are sc t your way.

  2. Thank you Linda. We know you speak for a great many of our family, loved ones, and friends. We understand how difficult it is to be there for us in anything more than spirit and well wishes. Sometimes we have learned that we need help and have to ask for it. Friends did rise to the occasion and offer their help and our yard and garage are in ship shape for the summer! We have a couple of people who will check in on us when Terri takes her needed breaks this summer. And several people have become my “pen pals” to help me have adult level conversations (which will be much needed during the summer) because I will be watching the kids. Lastly, your support through your prayers, thoughts, and pixie dust do make us feel very loved. Thank you all for your help and support!