Today is the first day of the rest of my life as a cured MDS lady!
It is 6:45 am
I have said my prayers for love and comfort and strength from our Heavenly Father to do what I need to do and ask his blessing in my weakness to fill in what He can. We are ready to leave. To be continued from the hospital. : o)
The path seems long, but each step brings me closer to a cure.
I talked to Julie, my coordinator, today and everything is set for my admission on Fri. Feb 26. I go in at 8 AM to get a platelet transfusion. I have too few platelets (40,000/㎕) for the minor surgery to insert the permanent catheter for chemo and other infusions, blood test, etc. When my platelet count is over 50,000/㎕, they can proceed with the catheter insertion.
After I have recovered from the anesthesia, I will be admitted to the BMT ward and shown my room. It is a newly opened BMT facility. Each room has an individual hepa filtered circulation system. No chance of air contamination from the rest of the hospital.
That evening I will receive my first dose of chemo. Let’s see, that will kill the platelets I received in the morning. That makes sense. :/
I just heard this song by James Taylor on the radio. The words touched my heart and reminded me of all the family and friends who are with me right now. I want to be your friend and appreciate your friendship. Thanks.
If the sky above you
Should turn dark and full of clouds
And that old north wind should begin to blow
Keep your head together and call my name out loud
And soon I will be knocking upon your door.
You just call out my name and you know where ever I am
I’ll come running to see you again.
Winter, Spring, summer or fall
All you got to do is call
And I’ll be there, yeah, yeah, yeah.
Hey, ain’t it good to know that you’ve got a friend?
I want to be his friend. He thought he could get along in the world by himself, but getting lost in the deserts of Utah or somewhere close, he found friends are good. It took me a few years to see this movie. It was a favorite of my grandsons Bryce and Gavin. But it was on TV before Christmas and I watched it and it had such a strong message to me about friends.
I am thankful for my husband, Peter, family and many, many friends. They all want to help and that in itself is such a comfort and joy. So, to all of you family and friends, gratefulness and love and thanks from the bottom of my heart. There is much strength in knowing you are with me.
Looking forward at the likely loss of all my hair, my original plan was to go with my girl friend, Cindie, and daughter, Kerstin, to do wig shopping. Now, some people say just go bald, especially since the head may be very sensitive. I may do that. I have soft hats and scarves. But we travel a lot and I thought it would be great to have one to counter the bad hair days when traveling.
I’ll be 63 in April…mostly gray, for sure. My natural color hasn’t seen daylight forever, so I don’t know how gray I am. And it may come in curly. I like that idea!
I don’t know about you, but unless I want something more expensive, I prefer to shop by myself or with friends. My husband spends more money than I do. He prefers quality. So, in those cases, I take him. Otherwise, IF we shop together, he usually has directives to smile and make no comments unless asked. Well, at the wig shop he started pointing to styles and colors. I’m a natural brunette and he prefers blonds. OOPS! His choices were not even close to what I wanted. He was getting pretty verbal and the sales associate just looked at me and I shrugged my shoulders and asked him to sit and be quiet while I tried ones I liked and he liked! I found a color we both liked.
He wanted curls. I wanted smooth and sleek. Not a easy combination. My hair is short and layered just now — easier to deal with when it comes out. : / I really like it, he doesn’t really like it. And it would be ideal to have that same style. But, we found one that was flipped in layers in the back and I could make smooth in the front. So we bought it. I like it, but really want a short one to cover the transition stage. Maybe I won’t need it at all! Anyway, we’ll see what happens. Next time, I will go alone or shop on line!
I had my last bone marrow and lab tests in preparation for admission. We are awaiting my insurance authorization for final admission date.
I also talked to a lady who had my procedure and discussed her few side effects with the chemo and transplant. It was encouraging. I feel optimistic, but once it starts I think I may have one of those reality checks which let me know I am not in charge and depend on Heavenly Father for support. Tears of fear and the unknown will be calmed by my faith. I love the ocean and know that for every crashing wave, there is a new, beautiful and recovering one in it’s wake.
In the meantime I have piles of books, clothes, busy work, computer, etc.
I’ll be in the hospital 4-6 weeks, so they know we will be moving in! We’ll do it in phases. Should have the room set up in 2-3 days.
Well, I have a donor with 9 of 10 matched markers and one with 8 of 10 markers. Once the insurance approves my procedure, the hospital will contact the first donor and confirm availability.
The director changed my protocol from last Nov. to a more intense treatment. Since my match is not “perfect” with 10 of 10 markers and because I am in the intermediate stage of the MDS disease with 9 % blasts ( greater than 5% which is first stage) I will have an intense 7 day chemo treatment, 3-5 week recuperation in the hospital while my body grows some of my own cells ( but the disease will come back), then some short chemo and radiation treatment and then the transplant.
Ok. I guess hearing my disease was in a later stage than I had previously accepted shocked me a bit so I had my rain showers that night with a mini meltdown. But it needs to be done. I was dancing by the next day. I will proceed with my remaining preparatory tests and plan to be admitted Fri. Feb 26th. I’ll get my things ready, clothes, busy work etc. so I am ready when my coordinator calls.