Cindy Lou

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

Monday, July 31, 2006

Day 6

It wasn't a very good day today compared to yesterday. She is still on that rollercoaster ride. Her white count is down to 120 which the doctor said is normal. She has been experiencing vomitting on and off all day. Also her throat is sore and she not been able to even take pills, so all of her meds are going through her port,which right now has six different bags hooked up. I was there from about 1 til 7 . But she tried to stay awake because I was there. so I told her I would leave to let her get her rest. She said she has to take the good with the bad. Keep the prayers and thoughts coming.


Sunday, July 30, 2006

Day +5

What a glorious day! I woke feeling great! Was even able to eat my breakfast for the first time in a week. Then all my brothers, Craig, Doug, and Tony, along with sis-in-law Cindi and my Mom came up for a visit this morning. It was absolutely wonderful. They left around lunchtime and went to visit Libby. She is doing a little better, she is able to eat now and the headaches are lessening. She is a trooper. This afternoon Kyle and I watched the Indians game, since he can't see the Tigers games. Son, Kyle came at dinner time to pick his dad up and brought me a pint of Ben and Jerry's ice cream. That will be my bedtime snack tonight! Can't wait! I must again thank all of you who have kept myself and my family in your thoughts and prayers. You give me strength with your phone calls, visits, comments on my blog, and just your support is overwhelming to Kyle and I. You give me the ability to go on when the days are bad and to keep my optimism for a strong recovery. And the ability to keep saying YES I CAN, YES I CAN, YES I CAN!

Saturday, July 29, 2006

Day + 4

Today did not start out well with nausea and vomitting beginning at 7 am. So the nurse medicated me and I slept a couple of hours. By that time Kyle was here and I was feeling better. We took a walk and The nurse gave me some new medicine to fight the nausea around the clock. So the rest of the day went pretty well. I talked with Libby and she was feeling a little better, but still having headaches and nausea. Hope tomorrow is better for her. Tonight Kyle and Erika visited. I think I feel the best I've felt tonight. We will see what the morning brings, but I know it will be better than today.

Friday, July 28, 2006

Day + 3

Words can't express the emotion held in the video Jess made for me. I was having a yucky day yesterday and watching that video made my resolve even greater. I had a lot of nausea yesterday and my white count had skyrocketed, but the Dr said sometimes that happens and then it will drop the next day, which is what happened. Dr says I'm right on track , where I need to be. The nausea is a little better today. Son, Kyle stopped on his lunch yesterday and Joe(Libby's husband) stopped in. I couldn't figure out why he was here and then he told me Libby had to come back in because of terrible headaches and they found out she needed IV fluid and her Potassium was low. My Dad and Marge also stopped by for a visit. I slept most of the day because of the meds they gave me for the nausea. Today, I feel as if I can do the treadmill, which is what the doctor wants me to do. As the song goes 'the answer is all up to me" I will be replaying that song in my head for a long time. Thank you Jess, from the bottom of my heart, I love you so much! The magic bus ride continues..............YES I CAN, YES I CAN, YES I CAN!

Thursday, July 27, 2006

Moms Fight For Life

Jessie's video for mom...

Wednesday, July 26, 2006

Day +1

Today is day + 1 of BMT. Everything seems to be going as it should. My counts are dropping and that what they should do until the new bone marrow engrafts, which can take 7 days. The nurse tells me I am going to feel "yucky " while they are low, and I definitely felt that today, but I got 2 units of blood so that should make me feel better. Libby is taking it easy at home, I talked with her today, and she said she is tired and letting Joe take care of her. What a blessing she is, I just don't know what I would have done without her. Well, I am going to try to rest, tomorrow is another day to put on my boxing gloves. YES I CAN!

Tuesday, July 25, 2006

Happy Rebirth Day

O, praise the Lord for he is good! The bone marrow transplant is complete and I feel great! They told me I would sleep through it and I said NO, I want to be awake! The marrow ran in in about 10 minutes and that was it. Kyle, Jessie , and Joe were in my room during the infusion. Libby is still down in recovery, but she will get come up as soon as she is released. I can't wait to see her and give her a big thank you hug! Words cannot express my gratitude to her for the ultimate gift of my chance at life. I am riding high on the magic school bus ,singing YES I CAN and I know Libby is singing it too. KD stopped up at lunch and Erika sent up a homeade birthday cake for me. I even ate a piece and it was delicious. Thank you Erika, That was so thoughtful and that was the first food I've had in three was wonderful!

Monday, July 24, 2006

Day 8

Well the second day of the Cytoxan was not as bad as the first, and I even walked to the lounge while it was running and had vistors and felt OK. First, my brother Doug and Pat came and they brought Barb D to see me. Then my brother, Tony and Connie and their kids came to see me. We had a very nice visit and it is nice that they have such a room to visit in, since my room is so small. Doug brought me a gift from Gale, a punching bag and boxing gloves. Thank you Gale, I was a little teary when I saw them and I am going to hang the goves on my bed! Just so I remember what I have to do ! Then Patti came to visit whenI got back to my room. Today is my day of rest before my new birthday. it feels good to say "no more chemo". Libby stopped up before her appointment with the doctor today and we had a ncie talk with my nurse, I think it helped both of us. We are ready for tomorrow, Libby and I. We are going to beat this thing once and for all. So we are ready for the Magic School Bus ride tomorrow and we will be singing YES I CAN, YES I CAN, YES I CAN, YES I CAN!!!!!!!!!!!!!!!!!!!!!!!!!!

Sunday, July 23, 2006

Day 6 & 7

Yesterday was not a good day. The Cytoxan really did me in. the nurse gave me many drugs for all the side effects I was having and that made me sleep the rest of the day. Kyle left about 8:30 and I faguely remember kissing him goodbye. I feel better this morning, but I know as soon as they hang that bag again at noon , it will be more of the same. Thank goodness this is the last day I have to get thet stuff! It might have done me in physically, but it can't take my spirit and my spirit says YES I CAN!

Friday, July 21, 2006

Day 5

I had my last dose of Busulfan at 3pm. Now they have started running my IV faster to speed the next chemo drug Cytoxan, through my body. This is the drug that can cause bladder problems, so I will be up to the bathroom a lot. I don't really know how I am going to react,but so far I have not been nauseated(knock on wood). I am just counting down the days until I am cancer free!When I can say WE DID IT!! Libby stopped this afternoon and gave me the cutest statue of two sisters.The Magic School Bus is ready to go!!!!!!!!!!!!! Ding,ding, all aboard.

July 25 will be my "new birthday"

I think some of you thought I only had 1 day to go until BMT. Sorry for the confusion. It is scheduled for 7 am on July 25. So get ready to celebrate!

Thursday, July 20, 2006

Day 4

One more day down until my "newbirthday". I had another bad headache today. But, i've been up and walking a lot. Kyle and Iwatched the Detroit Tigers kick butt this afternoon and Kyle is a happy man. I've been very bored as you can see when the highlight of my day is watching the Tigers! O well, it could be worse. Keep you prayers coming......YES I CAN!

Wednesday, July 19, 2006

Day 3

I woke up this morning with throbbing headache at 6 am. The nurse told me that it can be a side effect of the Busulfan. She gave me Oxycodone for the pain and I went right back to sleep until 8:30. Iam starting to feel some side effects, but nothing like last time. Kyle hasbeen here all day he lokks tired. He and I took a cat nap this afternoon. We also have been getting in many walks and trips to the patient lounge. I am feeling good. YES I CAN!

Tuesday, July 18, 2006

Day 2

Another day down! I'm not feeling too bad. I had chicken cordon bleu for dinner and ate every bite! It's like I keep waiting for the side effects of the chemo and they have not hit yet. Maybe I won't get any this time! Kyle and I watched a movie this afternoon and played some card games on the computer in the patient lounge. That made the day go by quicker. Then, son, Kyle picked him up after he got off work tonight. I took a quick nap after dinner and then took a walk down the halls. The chemo I take right now is in pill form, but there are 6 capsules and each capsule has 6 little pills in it. It is hard to get them down, but so far so good. I will finish with that type on Friday and then on Saturday I will get an IV chemo called Cytoxan for 2 days. That one has harsh side effects. Monday will be a day of rest from chemo. Then Tuesday, July 25 will be my "new birthday"!!!! The day I receive new life from my sister, Libby! I am ready to ride The Magic School Bus. For those of you who have not read the comments on my blog, on July 16 a friend of my sis in law, Jan, wrote of being in the room with her boyfriend's brother when he received the life saving bone marrow cells and she compared it to the children's book The Magic School Bus. So I am going to call it my magic school bus ride! Ding, Ding, YES I CAN, YES I CAN, YES I CAN, YES I CAN!

Monday, July 17, 2006

Day 1

Hi everyone. I am all checked into room M50-04. It is a private room with a view of the Cleveland skyline, but it is very small and very sterile. I think when I have visitors we will go to the patient lounge. I have to wear a mask there, but it is much more spacious and comfy. We have a keycard to get in there. Ihave not started my chemo yet. My nurse tells me they will start it at 9 pm. I am ready to get this show on the road. I'm hoping I am not going to have to count to Day 35 again this time. We will see what we can do about that. I'm thinking I can do this in something like 21 days. YES I CAN!

Thank you

Thank you, thankyou, thankyou everyone. You have lifted me with your prayers. I am ready. So let's go fight this demon for good and get on with the rest of this beautiful life. Love you all.

Sunday, July 16, 2006

Last day home

Well the bags are packed including the pink boxing gloves. I am as prepared as I am going to be. I've said my goodbyes to almost everyone and I am ready to face whatever the future holds for me. Only God knows what that may be, but I've pleaded with Him for many more years and I know you have too. I ready to put up the fight of my life if I have to, but I'm remaining optimistic that I will get through this with a minimum of complications for me and also for Libby. I saw many friends and family last night and everyone has been so supportive and that is what is going to get me through on the hard days. I am blessed and humbled by your caring. I had dinner with my brother, Tony last night and he has really been one of my rocks, thanks Tony. Tonight we are having dinner with our friends Ron and Patti at my most favorite restaurant. It will be my last hurrah for a while. I am ready. So let's do this one more time..............Let's Roll! YES I CAN!

Saturday, July 15, 2006

Last visits

Last night we made the trip to Toledo through a terrible storm, but arrived safely. I visited with some of the nurses I work with at TTH. It felt so good to be there. Can't wait to go back. Then I had my last visit with the Toledo grandkids and we had a nice visit and even were able to sit out on the deck after the storm passed. Many more memories to lock in my bank to call on in the days to come. Today, Kyle was going to mow the grass (or weeds) on our lot, but it was too wet, so he went for a motorcycle ride since he won't be doing that for a while. Libby and her kids came by to see me before my hospital stay. Please remember my sister, Libby, in your prayers. Without her this bone marrow transplant would not be possible. Tonight we will get together with family and friends one last time before our trip. Without them and all of you I could not do this . I am indeed blessed.

Friday, July 14, 2006

Good to go

My appointment with Dr Kalaycio went great. He said I'm "good to go" and he feels I am a good candidate for BMT. Of course, he had to go over all the graft versus host disease complications that may occur. But, I am not going to fret about it, I am going to keep all negative thoughts out of my brain. I am going to beat this and I am going to be one of those patients the doctors all call remarkable. I just know it. You all have been such wonderful support through all of this. You lift me up with all of you prayers, support, and love and I definitely feel it. I appreciate you taking time to encourage me and keep me "up" on bad days. You have touched my life, each of you, in so many wonderful ways. It is so humbling to have so many people who care about me and I appreciate you so much. I couldn't do this without you. As my brother would say "enough of the mushy stuff" let's just do it! So, tonight I am going to see all "my girls" at Toledo Hospital to say goodbye for a month and then we are visiting our kids and grandkids in Toledo...Jessie, Mike, Alexa, Alayna, Alli and Zac, Lauren, Bailey and Riley. We will be saying goodbye to Kyle, Erika and Kade when we stop there Monday morning before checking into the Cleveland Clinic. We had a nice visit with Erika and Kade yesterday after my appointment in Cleveland. So, I wll post a couple more notes to you before my admission. And then I ask for your continued prayers. Thank you ALL! I will do this YES I CAN!

Wednesday, July 12, 2006

Last minute preparations

We've spent the last few days getting everything in order for our 5 week stay in Cleveland. Tomorrow I have an appointment with Dr. Kalaycio at the Cleveland Clinic at 9:00 am so we will leave around 7:30. I also have to see the social worker again and also have more blood tests done, so I am sure it will be a full day. I guess they just have to make sure everything is in place for the transplant. I think I am as prepared as I can be. I am getting my boxing gloves back out ( and they are pink, by the way) to help me through this final round. It is just so hard to make myself think about that when I am feeling so good. But I know what I have to do.........and I am going to do it. My body has gained so much strength in one month it is unbelieveable. And I have talked with several survivors of bone marrow transplants and their families and it has given me emotional and psychological strength I did not have before. I know what to expect, even though it is unpleasant, I will make it. YES I WILL. YES I CAN.

Sunday, July 09, 2006

Great Weekend

Well I had a wonderful weekend. Friday night we went downtown to Party in the Plaza and I got to see lots of people I knew. Afterwards we went to Deming's to sit on the deck, but mosquitos sent us inside to look at the stars from their sunroom. Saturday, Kyle and Erika and Kade came and spent the afternoon and evening with us and I got some special bonding time with my little grandson. That evening Jessie, Mike and the kids came and it was fun to watch Kade interact with his cousins. And of course, no trip to Nana's is complete without the tubbie at the end of the night! Great moments to savor on bad days. Today I spent more time with the grandkids before they left for home. Then tonight we went to Doug and Pat's house for a cookout. The weather was terrific, steaks were excellent, and the view was incredible as we watched the deer come up to the fence behind their house. As you can see I am filling my days and nights with many many memories to take with me, so I will say YES I CAN because I have to much left to do.

Thursday, July 06, 2006

What a Great Holiday

Our family had a great holiday. Two days with the grand girls was just what the doctor ordered for me! We had our cookout on the 4th and Lauren's parents joined us ( of course that meant Kyle and Daniel had to drink too much mama-wanna). That is a drink that they brought back from Punta Cana. I didn't think Kyle's eyes would stay open long enough to see the fireworks....... but they did. The fireworks were beautiful and we had a bird's eye view from the shoreline. We watched them with Lois and Buck and the grandaughters. I will keep that memory of holding Alli snuggled up next to me watching the fireworks, for all the bad days coming my way. That night the girls and I had a sleepover in the living room complete with popcorn and the movie "Sharktales". That is also another memory tucked away. Yesterday, Mike, Jess, Lauren and the girls went to Cedar Point and spent the day riding rides. We all had pizza for dinner and took a ride to Toft's for ice cream before they headed back to Toledo. It was a wonder ful two days for me and them. I know I won't be able to see them during my next hospital stay so I savored every moment. Less than 2 weeks left until I go back in, so I am packing in all I can into these last days, so I will be able to say YES I CAN even on the bad days.

Tuesday, July 04, 2006

Happy Holiday

Thought I would write early today since I know my time will be devoted to the grandkids later. Happy 4th of July to all of you out there who have followed me on this journey. I hope you have a safe and happy 4th with all of your families. Words cannot express how much Kyle and I appreciate all the prayers, love, and support from all of you! Happy, happy 4th of July!

Monday, July 03, 2006

Happy 3rd

Well it has been a happy 3rd of July for me. I feel back to my old self preparing food for the 4th. Of course, Kyle helped me. We made deviled eggs and macaroni salad and baked beans and I felt good anticipating seeing some of the grandchildren tomorrow. We have had some fun days the past couple of days. Demings had us out for supper on Saturday and it felt so good sitting on their deck relaxing and watching Bill's Kites. Then yesterday we had a family shower for our neice Jillian. Then we had a cookout with everyone in the Roth family. It was fun! Now we are getting ready to go out to my brother, Doug's house and sit by the campfire. I am going to savor every moment! Like you said Gale, I' m going to lock all these great times in my memory and draw on them when I need them. Yes I will. YES I CAN!

Saturday, July 01, 2006

Saturday cleaning

Well, I can't put it off any longer.........I have not really cleaned since I've been home, so today will be a day of cleaning the house. I haven't written for a few days because I guess I had one of the five stages people go through that have cancer. I learned the stages in nursing school and the first stage is denial, which I certainly had, since I knew when I went to the hematologist way back in October there was something really wrong, but I just chose to accept the doctor's explanation of my low white count and push all the other thoughts to the back of my mind. Then when I found out it was leukemia.....more denial. I kept thinking I would wake up from a bad dream. The second stage is the "why me" stage and I never really went through that and I thought I had passed it by and continued on to the third stage. But stage # 2 reared it ugly head the last two days. All at once it came over me like a wave of emotions. Why me, I had worked so hard all my life to make my life the way it is today and I did! Why at this time? I had acheived my goals in life. I had raised 4 wonderful children of whom I am extremely proud. I had 6 wonderful grandchildren and # 7 on the way and I looked forward to being an intregal part of their lives for many years to come. I had graduated from RN school just 1 year ago and I thoroughly enjoyed my job. Life was GOOD and I was enjoying the fruits of my labor. IT JUST ISN'T FAIR! So, I cried myself to sleep and dreamed about all the good times in my life. I did feel better this morning, so hopefully that is it for stage 2. I will beat this! YES I CAN!