Shine like a diamond, Gleam like a star!!!

Today I had a lot of wonderful visits from old and new friends and family. Early this morning I walked 25 laps around the floor. The nurses are all guessing just how many laps make a mile- some of their guesses are wishful thinking in my opinion :) Then, to reward my walking I had numerous cookies brought in by Danielle and Jeff Smith. Danielle is well known in the westchester region as the best baker in town. The empty bag of triple chocolate cookies doesn't lie! My good friends, Aroos and Kelly from Mystiques and ICC came in with words of encouragement and cheer - along with a basket of goodies. It was so amazing to remember old times at Pike and catch up on their amazing lives. It really brightened my day, even my whole week!



My count is starting to come down, so I'm feeling more tired. I rested for a little while this afternoon before my Aunt Lisa, Uncle John and their kids, Sam and Emily along with my Aunt Mary and Uncle Joe brought in a small feast of chicken chile, vegetable soup, corn bread, rolls, brownies and oreos! Now THAT is how you eat in the hospital! Classic cuisine may be chemo approved, but it's got nothing on a Taylor chile. It was a great day full of the love of family and friends. I feel so grateful!

As I get ready for bed this evening, I'm waiting for the doctor to come and check in since I'm having trouble catching my breath. I thought it was just the amount of chile I ate, but after awhile, I guess that's not it :) I will end the day with a bit of great news- Dr. Azar told me that the final results on my spinal fluid were clear which means NO MORE SPINALS. I guess you could say This Is NOT Spinal Tap :)


Love you all

I feel so lucky to have such wonderful family and friends.

Spinals and cheez-its

Good evening everyone,

I've had a busy couple of days. Lots of wonderful visits. It is so incredible to feel so loved and supported. A cancer unit isn't the easiest place to visit. It brings up some of our worst fears. I am so lucky to have people that would do anything to help me and my family through this time.

I had a nice visit from Dr. Azar yesterday to let me know about my lumbar puncture. I despise those. I had way to many last time. Dr. Azar did a triple take when he found out how many I've had. This one will determine whether the leukemia is in my spinal fluid. If so then I get 5 more spinals with methotrexate and if not then no more taps. Anyway, the procedure was uncomfortable but Dr. Azar was fast so just a little pain and a migraine. So far they found a few suspicious cells but I won't know until the flow cytometry gets back tomorrow.

I had a wonderful visit with my cousins Sam and Emily this afternoon. Emily made a wonderful garland to decorate the room. Sam brought a few games to help with the time. One of his favorites is Rush Hour, Traffic Attack. It brings out the OCD and I can't put it down. We also had a wonderful couple games of UNO attack. I love the original but this one spit cards out at you. I am looking forward to making my family sick of playing it with me like I did the game sorry.

I had a nice visit last night from my uncles John and Ralph last night. The staff loves how supportive and fun my family is. Thanks Aunt GiYun for the chicken teriaki and egg rolls. We had that for dinner tonight along with the peanut butter pie Aunt Lisa and the twins brought. Sam accidentally sat on the pie in its bag but it didn't stop us from devouring it.

I'm not sure if you can tell but food is on my mind. Nothing like steroids pumping through your body. I was doing my lap walking when a nurse walked by with a box of cheez-its. I finished the last 20 minutes of my walk thinking about all the good toppings that go on cheez-its. pathetic. really pathetic.

I had a wonderful visit from our puppy Penny yesterday. I was able to see her all covered up. I wasn't sure she would even recognize me with mask, gloves, and gown. I didn't need to worry. Such a sweetie.

Well, it's getting late and I feel like I am rambling. Think positive thoughts for no more spinals.

Love Andrea

PS...I meant to post yesterday about the bone marrow registration but forgot. The transplant team that is working with me suggested people visit the website marrow.org to find out more information about becoming a donor or being tested. It is an incredible gift. The kindness of strangers could save my life. Even if you're not my match someone just like me is out there waiting for that gift. They have a great website.

Hansel & Gretel Eat Your Heart Out

Good Evening,

I hope you all enjoy our work of art. Kathleen brought me an art project for the evening. We were covered in icing and we had a panic moment when we thought we had stained the bed side table red and green. oops.

I am more tired but I have had another relatively calm day. It is so strange. So different from last time. Most of my meds are things to prevent any and all potential infections. I had to practically beg for this last time. A whole new experience. I know things will get much harder but I am so very thankful for this.

I had a wonderful visit from my Aunt Karen this afternoon. She brought her famous homemade apple pie. I hope people feel like they can come to visit without bringing food...but it does help. :) I love all the visits.

It sounded like a very cold day today. It was sunny and warm in my little room. Mom and I worked on a baby quilt which I can't show you until it is presented to the new baby. I hope she likes it. Kathleen is spending the night tonight. It should be a better night. I am drinking gallons of fluids so I get to stay off the IV fluids and I have a night off from chemo. Kathleen is all over the place with the TV watching. Her line up this evening was 1. History of McCarthyism and Hollywood 2. The Real Housewives of Atlanta(never again) 3. The Closer 4. Prop 8 arguments in the ninth circuit us court of appeals on c-span. 5. America's cutest cat. I haven't laughed so hard in awhile. Julie and Ross this is totally for you. My nurse must think we are really odd.

Well on that note...Goodnight. Thank you for all the wonderful thoughts and prayers. I really helps to read them everyday.

Free

Good Evening,

Very early this morning they decided I needed to reduce the amount of fluids I was getting so they took me off the pump for a few hours. I felt like a 90 year old up and down to the bathroom all night. Give me a diaper from cripes sake. The doctors rounded at 7:30am this morning. I wear ear plugs at night so I don't hear all the staff coming in all night (or my family snoring), so the doctors first words to me this morning was "Do you have the wax out of your ears". Good morning Dr. Cripe :) He and his residents then had to help me dig around in my bed to help me find my glasses. I'm a tough patient.

It was so incredibly nice to not be hooked up to the pump even for a few hours. It is only a matter of time before I trip over my line or walk off and forget about it and it pulls out of my arm. Hmmm...lets change the subject. I was able to dance around the room, exercise, yoga and then I had to get hooked back up.

My Aunt Lisa dropped by with the promised donuts from Longs. Soooo good. She was also so nice to bring some fabulous buckeyes that my cousin Emily made with my Aunt Karen. She is quite the cook. Everything Emily makes is wonderful. My cousin Sam made me a get well card. He drew a Christmas tree with 97 presents under it. We can all hope, right Sam? They also lent me a digital photo frame loaded with great family pictures. Such a cute and thoughtful idea.

Kathleen and I finished up a few more Christmas decorations. We watched "It's me or the dog" on the animal planet. Made me miss Penny, our dog. It also made me realize that I have a lot to learn about what not to do with dogs. Funny what I watch when I finally have cable. Kathleen and I started working on a puzzle. It's a picture of Obama and his dog Bo. Ever the democrat. It may take me the entire hospital visit to get it done.

My friend Stephanie dropped by for a visit. She was really bundled up so it must be pretty cold out. She is making a ham dinner tonight. I am hoping for the ham and bean soup from her leftovers (Hint hint). My Uncle Tom also stopped by for a lovely visit. He also brought me some of Aunt Karens buckeyes. They were going fast. I always enjoy joking around with Uncle Tom. He has the best stories about his middle school students and drivers ed students. I pity the fools.

Yesterday it snowed several inches here in Indy and it was beautiful. Unfortunately, I insisted that we leave my dads sailboat out late this year. I was supposed to help him take it out of the water but I am "conveniently" here in the warm hospital. He and mom went out to sweep the snow off the boat and make sure it isn't frozen in the water yet. Sorry guys. :) They were really cold when they got here this afternoon. The pics of the boat are so beautiful.

Well, health wise it was a thankfully uneventful day. No pain meds and no extra nausea meds. Maybe it was the donuts. I have chemo again tonight. The bags they hang are so much smaller than they were before. My nurse was kind enough to tell me not to let the size fool me. Great. I hope this works.

I really love all the comments and visits. It really helps the time and my mind stay in a better place. Thank you so much everyone. Tomorrow I will post the info for signing up to be a marrow donor if anyone is interested.

Goodnight. Love Andrea Rose.

Yoohoo it's round two

Day two!

Slowly settling in. I forgot how hard it is to sleep with so many people walking in and out. I asked how long before I would start to feel the chemo. Terrible idea. She said around three days and three hours later I was sick. I inherited my weak stomach honestly from my mother. I was able to recover relatively quickly.

My Aunt Lisa stopped by for a wonderful visit. She was working on a different floor here at the hospital. I am really looking forward to the donuts from Longs bakery. Thank you Liser. I also got a visit from Uncle Ralph and cousin Joseph. We were able to take a picture in front of the "fireplace". It's just a light flickering on fabric. Probably a little safer than my Christmas lights but not nearly as pretty. Well it is the 11pm chemo witching hour. I am comfortable and watching a classic chick flick, Legally Blonde, with kathleeny. Some things never change. It has been wonderful to hear from everyone. It can be lonely and all the love helps.

goodnight
love andrea rose

Acute Lymphoblastic Leukemia

I wish I could be posting that my scans were clean. Unfortunately my cancer has relapsed. They found a mass on my right kidney and involvement in my bone marrow. My doctor was surprised. My type of lymphoma doesn't usually present that way. While doing the biopsies it came to the attention of my doctor that I was misdiagnosed in Chicago. I've had acute lymphoblastic leukemia this whole time. Imagine our surprise.

My treatment is one huge high dose chemotherapy round called the LARSON protocol. The goal will hopefully put me back into remission. They are hoping that I could be out of the hospital by Christmas. Once I reach remission, and I will, I need an allogenic bone marrow transplant. Kathleen was tested to see if she could be my match. They told us today that she's only a 50% match. I now need to be put on a transplant list and hope they find a better match. The side effects will be similar as before. It doesn't sound pretty. The doctor was pretty blunt. The chemo will be rough. The transplant is scary.

I have a 80% chance of surviving the actual transplant,and 50% overall. Then the huge long list of complications and infections begin again. I will be in the hospital for 2-3 months. Then depending on my immune system, in and out of the hospital for the next 6 months.

I spent the first week after finding out researching everything I could. I quickly stopped. There is only so much I need to know right now. Statistics can be a real downer. I have cried, laughed, made too many bad cancer jokes, and now I am sitting in my hospital room. They have finally trapped me long enough in one spot to actually write something.

The staff here at the IU Simon cancer center is incredibly nice. They really had a hard time getting my central line started. It has been along time since I've had an IV line attached and it hurts.

I am sorry it has taken me so long to write anything. I am in denial. It is a positive to know what meds work this time around but it sucks that I remember how much medicine it took to attempt to keep me going. It is hard to imagine going back to that place. It seems like a bad dream. I would love any and all thoughts, prayers and positive energy thrown my way. I could use it. It was so wonderful to hear from people on the blog, letters, and phone calls.

Thanks
Andrea

PS: Kathleen did a wonderful job of decorating my room. Very festive. Please note my mothers diet coke cans already. Also note the extention cords that are not up to hospital codes. Dad is so proud.