Friday, January 22, 2010

Lovely!

Yesterday was a very long day. I had to be to the outpatient clinic at LDS hospital at 10:00. Started with getting labs done and my lines flushed. Had to meet with the PA to review meds and how I have been feeling. Then I got to meet with the social worker, dietician (how do you spell that?), pharmacist, and nursing educator so that I will know what to expect when I am in the hospital. After being in the hospital for a total of 43 days, the meetings were more a review of the things I already know. It took 2 hours to meet with everyone (11:00-1:00) and then we went straight to the family meeting until 2:20ish, and then had to have another chest x-ray. My parents and I left the hospital @ 3:00. My family and I can't figure out why they (LaDee) always schedules things through lunch. Go figure!

We had our family meeting with Dr. Hoda (1 of my 4 doctors), LaDee (my transplant coordinator), and one of the physician assistants (I don't remember her name). It was nice to have my parents, Angie, Greg, and Charise there with me. One thing I have learned through all of this is that I am blessed with an amazing family. I love them all so much! The purpose of the family meeting was to review the stem-cell-transplant process, to sign consent forms, and to have questions answered.

I did learn that my stem-cell donor is a 27-year-old white male; he lives somewhere in the United States; he has my same blood type, O-; he hasn't had some of the viruses I haven't had (apparently this is a good thing); and that is all. I can get more information in 1 or 2 years. His stem cells will be harvested wherever he lives and then transported to LDS hospital via carrier. I will be given the stem cells on Saturday, February 6 through one of the ports on my central line. The process is just like having a blood transfusion.
Before my stem-cell transplant, I will do 6 sessions (once each day for six days) of total body radiation with an extra boost to my brain. I have been very concerned about the extra boost to my brain. I feel like I am pretty smart and don't want to be "dumb" after. I can't remember who I was talking to, but someone said something to me like you are already so much more intelligent than most of us - having the extra boost will just bring you down to the same level as everyone else. I am choosing to believe this :). Maybe it will get me through. Following the 6 days of radiation I will do two days of chemo. The purpose of the radiation and chemo is to wipe out my immune system so it doesn't fight against my donor's stem cells. The objective of the transplant is for my donor's stem cells to go through my body and find/kill any dormant or hiding leukemia cells. As of now, I am in complete remission. My bone marrow is clear at the molecular level. That said, it is known that I have leukemia cells that can't be seen and that if I do not have a transplant the leukemia will come back and will win. So, transplant it is!

The scary part is that once the donor's cells start making white cells, red cells, and platelets in my body (called engraftment) I can develop graft vs. host disease (GVH). Essentially, this means the donor's cells view my systems as the enemy. Could be the liver, skin, GI tract, or whatever. GVH can cause a lot of problems for a long time. I just plan on not having a lot of problems. I will go into the hospital next Thursday and will be there for 4-8 weeks. I am planning on 4, but should maybe plan on 8 so I won't be disappointed should that happen.

The drive back to Cache Valley was good. We stopped to see my grandma Hill on our way home. I haven't seen her for so long! I adore my grandma Hill - my Norwegian grandma. We are always excited when we get grandma to give is some sort of a smile in a picture. She's always smiling, but is a goof when it comes to having her picture taken. Love her!

It was wonderful to get home to Kaden. I enjoyed visiting with some good friends when I took Kaden to mutual. I also visited my dear friend Janine, the Quists, and aunt Carol last night. I have decided that it is not possible to see everyone I want to see when I am here for just the weekend.

Today was a fabulous day! I had several appointments in Logan today, but made some time to go to my school. I realize it is a big petri dish, but I have missed my friends and students so much! I wore my mask the entire time and did my best to not touch anything. However, I could not resist giving big hugs to my friends. I was able to make it around to most classrooms - I ran out of time (dentist appointment) and didn't make it to 9 classes or the kitchen. I'm sure Curt (Mr. Jenkins) was happy about that because he was leary of my being there and concerned about the petri-dish effect. If I didn't make it to your classroom it wasn't because I didn't want to! My morning students were working hard when I got there. I loved the many smiles I saw and am concerned by a few reactions. I do not look like myself in my mask and bandana and I could tell some students were not too sure about me. I wish I could have seen my afternoon students. Scheduled appointments made it impossible. I am so appreciative to McCall for taking such good care of my students, my classroom, and my belongings. It's nice to not have to worry about things.

I was surprised by a wonderful sign, necklace, and quilt from my friends. The sign will be hungs in my hospital room next week, the necklace will be close by, and the quilt will be keeping me warm. I know the picture is kind of blurry - I couldn't get a nice, clear shot. Each square has a saying, quote, thought, or simply words of love on it. I took a close up of two of them.





(I am now understanding the frustration my sister Kim and brother Greg experienced when trying to add pictures to the blog. I don't know how to get everything to work how I want, so enjoy the randomness of the pictures.)

After my morning appointments I was able to go visit my great-aunt Ronda with my mom. I haven't seen her since summer but have talked to her on the phone a couple of times. We visited her quite often when I was younger. Her back has been making things really tough for her. It was nice to visit with her and to learn how her daughters and my great-aunt Portia are helping her out so much. I also loved how Ronda expressed her desire to serve and help others and her discouragement of not being able to. Sometimes having the desire is enough.

The rest of the afternoon was filled with appointments, piano playing, and resting. I was so worried that my numb fingertips would make it hard to play the piano. So far I can still play. I know that my ability to play the piano is a gift from my Heavenly Father to help me find peace. That may sound strange to some of you. It is something I have learned over the years. Sometimes the gifts we are blessed with are for our own benefit.

Love you all and am glad you now know more than you ever wanted to know! ;)

Mel

10 comments:

angie said...

Great post, Melanie! It was fun to see grandma and Rhonda. You are right, I need to visit them as soon as I can. Love and miss you here. :)

Cami said...

This post is so awesome! I soaked up every word. You look and sound fabulous! You are a source of strength Mel...you inspire me!! I love you dearly and feel blessed to have you for my sister and friend.

Now, I will see you tomorrow! It has been agony being so close, but unable to visit.

Alean said...

It was so good to see you, even if it was in a petri dish. I know you have got to be going nuts! The pretzel was awesome! I need the step by step directions. I appreciate the post, I like to know the info of what to expect from this transplant. You look great! Austin came home and said you went to his classroom, (Carla's) and he said in his matter of fact voice, "She looked like a pirate." I laughed, hope you do too!

Kerren said...

What a great treat for all of us! Your visit was awesmoe! Sadly, I missed the pretzel treats -- but would love the recipe/directions. The best part was seeing YOU! Hope no germs had the audacity to even consider getting near you! We do our best to stay germ free! I was glad to learn more about your upcoming proceedures. We al still keep you forever in our prayers!

Miss Nelson said...

What a fun post! I'm sure your kids were so excited to see you! I can only imagine how hard it would be to be away from my dear students for that long. Thanks for being such an example of strength! I'm thinking of you!

Amy Johnson said...

I miss you and Jen's piano duets! I agree completly that some of our talents are for our own enjoyment! You sound like you are doing good, I hope everything goes good with your transplant!

Kimbies said...

This was great Melanie! I just love you and admire your strength more than words can say! It will be good to see you again. It is so hard to be so far away! I will becoming out again 2nd week in Feb. Looks like you had a fun filled weekend at home. Great pics!! :)

I love you dear sister!

Taylor said...

It was great to give you a hug Mel. We miss you tons!

Taylor said...

I don't know why these are posting with my daughter's name. Hi from Carol -(can you imagine how hard it was to get through that SEP form without you??)

Mandy said...

carter was so excited to see you! He told me all about it! :) I'm glad you were able to stop at the school. Good luck next week! WE're pulling for you! :)