Cindy Lou

Journal to share my thoughts and daily events with friends and family
in my journey through Acute Myelogenous Leukemia (AML).

Saturday, September 30, 2006

Clinic results

In reading through my entries I realized I never did tell you that my biopsy for GVH of the skin came back positive, but that is not all bad according to my doctor, because they want you to have a little GVH and of all the ones to have the skin is best case scenario because they can control it with prednisone. So they incresed my dose of prednisone and the rash went away. I just have to tolerate haveing "chipmunk cheeks" for a while. Yesterday I spent the day at the outpatient clinic for my weekly appointment and Kyle and Marcie went to visit Erika, Kade and Liv. My platelets did drop from last week, but were not in the critical range, and my doctor wants me to come back on Tuesday for more labs to see if they go up now that he took me off the IV I have to give myself every night(the Iv drug lowers platelet count). So we will have to make 2 trips next week, but that is ok. We went back to Kyle and Erika's after the appointment and had dinner with them. It was so nice to see all of them! Again, I am deeply appreciative of all the cards, letters, prayers, and support from all of you!

Tuesday, September 26, 2006

Thank you

Thank you, thank you, thank you everyone for helping me reach this milestone in my recovery.. being home for good. It feels so wonderful!!!!!!!!! We went back up to Hope Lodge this morning and finished checking out, since we left in such a rush on Friday. We met Libby for lunch on another beautiful fall day and enjoyed the fall drive. I'm feeling good, just a little weak. Thank you also to everyone who fed us over the last few days , homeade food is so delicious! Plus it has given Kyle a little break. You have no idea how much. Hopefully I will get my "legs" back soon. Tomorrow Kyle and I are going to try to walk the whole block. It was so good to see people who stopped over and just so good just to be here on this earth with so many people who are really important to me. Love you all!

Friday, September 22, 2006

SURPRISE

My day of appointments went so well all of my blood counts are going up and my platelets are rising daily.......so the doctor says I only have to come back once a week on Fridays....so WE ARE HOME FOR GOOD!!!!! We couldn't believe it! We packed as much as we could quickly so we could get out of Cleveland before rush hour and we got home in time to pick Marcie up from work and surprise her. She is happy she is home too. Actually Doug picked her up and brought pizza for supper. Cameo pizza tasted so good. We have to back and check out of Hope Lodge next week because they won't let you check out at night .... so we still have a few things to pick up and check out between 10 am and noon. I know all of you are thrilled for us too. Thank you for all of you continued support... and stop over and see me!

Thursday, September 21, 2006

Beautiful day

Kyle and I really enjoyed the beautiful fall day today. We went to see the Garfield Memorial in the morning, since I had a free day today. The tour was very interesting and I even made it up all the steps to the top, where we walked out on a balcony with a great view of the lake and the Cleveland skyline and the cemetary grounds surrounding the memorial. Then we took a walk through "Little Italy" and enjoyed all the smells coming from the bakeries and restaurants and brought dessert back to the Lodge. I had cannoli and Kyle got a cream puff. It felt good to be almost "normal" for a day. Son, Kyle came and visited last evening. We were going to go to their house, but Kade is sick and I have to avoid that......so Kyle came here. We miss seeing Erika, Kade and Liv, but maybe next week we can see them before we go home, if all is well. Tomorrow is my long day at the clinic....I have a 4 hour infusion of immunoglobins, and a Dr appt at 3 pm. We will be leaving after that for a weekend home. I will update you on my appointment when we get home.

Tuesday, September 19, 2006

Good News

I received very good news today at the clinic. Libby's platelets that I received on Friday made my platelet count double and I did not have to get any blood, platelets, or electrolytes today, so it was a short visit! I did see one of my Doctors today and he told me that the CMV virus is now officially gone and that is also wonderful news. They still don't have the results of the skin biopsy back, so I will have to wait until my next appointment on Friday to find out about that. To Mary Beth, my heart goes out to you and your family at this difficult time. However, you have the right attitude. She has been ready for a long time, and she will be at peace. Please keep us updated. And to Cindy W, the address here is 11432 Mayfield Rd. Cleveland, OH 44106. Thank you also for keeping Marcie busy, she really enjoys her nights out with you! Thank you every one for all the times you have lifted me up and helped get my family and I through this.... I will never forget all of you! I know I have a long road to complete recovery, but I will make it with your continued support!

Back at the Lodge

We arrived back here yesyerday evening. Had a really really great weekend home, and even got to go to my brother, Craig's surprise 50 th birthday party on Saturday night. Made it very hard to come back. Hopefully we will be home for good by Oct 1. Then we will just drive up for weekly appt. Today I have a full day at the outpatient clinic and a Dr appt. We will find out the results of the skin biopsy also, so I will update later. Thanks for all the continued support!

Saturday, September 16, 2006

Feels good to be home

It feels good to be home for the the weekend. We got here around 3:30 yesterday and picked Marcie up and unloaded the car..... by then we were all exhausted ! My visit to the clinic took longer than expected because my Potassium was low and I had to get a 3 hour infusion of potassium and now I have to take another pill every day! I did get my sisters platelets yesterday and it seems I'm feeling stronger today! I just can't sleep! My Dr increased my steroid to help make the rash go away and that is one of the side effects of steroid ...Insomnia! The rash is starting to go away though. And I am feeling good. I'm sure being home has something to do with that. Hopefully we only have to stay at Hope Lodge for 2 more weeks and then we will just drive up on the days of my appointments. Marcie will be happy. They are having Disney day today at Kroger, so look for Minnie! Gale, I will call you today to put in my request, but only if you have time. You are a busy woman!

Thursday, September 14, 2006

Extra appointments

Well, it seems I have developed a minor graft vs host disease of the skin. So today I have some extra appointments with the dermatologist here. If I have to have anything this is the best one to get. I have a itchy rash on my chest, back, and shoulders. They will biopsy it today and then medicate me accordingly. The doctor has decreased many of my GVH meds and that is why it is showing up, but that is what he wanted to see if any GVH would show up. So we will see what happens today. I will be getting Libby's platelets tomorrow and Then we will be heading home for the weekend. I'm still feeling good and can't wait to go home again.

Extra appointments

Well, it seems I have developed a minor graft vs host disease of the skin. So today I have some extra appointments with the dermatologist here. If I have to have anything this is the best one to get. I have a itchy rash on my chest, back, and shoulders. They will biopsy it today and then medicate me accordingly. The doctor has decreased many of my GVH meds and that is why it is showing up, but that is what he wanted to see if any GVH would show up. So we will see what happens today. I will be getting Libby's platelets tomorrow and Then we will be heading home for the weekend. I'm still feeling good and can't wait to go home again.

Monday, September 11, 2006

Platelets rising

I got good news today at the clinic. I went for my appointment and found that my platlets went up instead of down for the first time. I still had to get platelets, but that is a good sign that they are going in the right direction. I will get Libby's platelets later on in the week. Today was my long day there and I was there from 8 am to 4pm. Had another great weekend home. Marcie was happy we were there. She can't wait until we stay for good. Got to visit with people who stopped over and Daleen, I am sorry we missed your call, maybe we can see you next weekend. We will be going home every weekend, God willing. Seems things are going in the right direction. Thank you everyone for continued thoughts and prayers.

Friday, September 08, 2006

Home again

We arrived home after my Dr appt this afternoon. It feels so good to be home again. Ihad to receive blood today and that is probably why I felt like laying around a lot yesterday. Everything seems to be going good except my platelets. Seems like they are behind a little, but the Dr says they are working on that. I have a lot of appointments next week, so I'm just going to enjoy my weekend home. Libby is going to give me some of her platelets next week, they seem to think that may jump start them. I am doing good ....look forward to seeing anyone who stops by!

Pictures to bring a smile!

Me and My Gang!!!!!!!!!!
Alli and Papa playin'
Happy Birthday MOM!!!!!
Alexa rubbin Nana's feet! Posted by Picasa

Wednesday, September 06, 2006

Jesus take the wheel

Back by popular demand! To everyone that heard but didn't see. This is Cindy's daughter Jessie's youngest daughter Alli singing like a SUPER STAR!

MOVIE STARZ!!!!



I thought that you would enjoy these also! Posted by Picasa

HAPPY BIRTHDAY MOM!


Mom hope you had a wonderful birthday we all
enjoyed your company! We Love you!
 Posted by Picasa

Tuesday, September 05, 2006

Cindy Lou is 51

Thanks for all the birthday messages, my friend Barbie K passed that rumor that I was 52, but she is just getting me back for the year I put it on TV that she was 50! and she wasn't! That's Ok the age doesn't matter, it's just being here that feels so good. My all day outpatient trip was not too bad, had a great nurse. And the doctor took me off some of my meds, so that was great too. Tonight, my sister, Libby and her husband Joe brought Kyle and I dinner from Olive Garden and they ate with us here at the Lodge. It was WONDERFUL! I'm going to start gaining a lot of weight if I keep eating like this! Olive Garden is one of my favorites! Got to see all my brothers and sister over the weekend and also all my children and grandchildren and some friends ...... maybe that is what is helping me make this recovery more quickly. The swelling in my feet is finally stating to resolve and I even got tennis shoes on today. TODAY WAS A GOOD DAY

Monday, September 04, 2006

Wonderful weekend

We arrived back at the Hope Lodge this evening, after a wonderful weekend at home. I feel so much better after being home. I have a full day of treatments tomorrow at the outpatient clinic. We stopped and had dinner with the Schwerer's before we came back and it was delicious. we plan on going home again next weekend. Thank you everyone for your continued support.

Saturday, September 02, 2006

Good to be home

It feels so good to be home. Today was a really good day. And it seems like fall made an apppearance for my first nights home......... falll has always been my favorite season. Watched college football with Kyle, lit my candles, and savored every moment. The kids and grandkids are coming tomorrow and I am excited.......... miss them so much! Barbie K brought dinner tonight and it was delicious..........Thanks Barb , Kyle loved it too. He got to take a break from cooking tonight. Just wanted to let everyone know things are good and not to worry if I miss a day posting.... 2 or 3 then you can, but hopefully that is not going to happen again. The bus is back on the right path.

Friday, September 01, 2006

HOME

We made it to Sandusky today. Oh, when I walked in the door, I could smell autumn. Barb and Bill had decorated for fall and the candles smelled soooooo good. I lost it when I saw how beautiful it was. My mom and Kyle's mom brought us food, and my mom stayed while Kyle ran to the store for a few items to hold us through the weekend. We told the Hope Lodge we would not be back till Monday, since my doctor gave me clearance and they were real nice about it. I need a few days in my home......it's the best therapy for me. I'm getting stronger every day (even though that's not too strong) I have a hard time with the steps, but baby steps will get me there. Kyle is doing such a good job being my caregiver, but I know he is exhausted. I took a nap when I got home so I could be awake when Marcie got home at 11 pm....so that is why this is so late . She is glad to have me home although she doesn't want me to go back....I have to for a little while yet and the Hope Lodge makes things comfy for us.