A Very Cool Tree In One Of The Hospitals

Houston as We Were Leaving...

My head is swimming...make that drowning, in thoughts and new knowledge. I don't know where to begin. First, let me say, I feel better than I have in over a year. Physically, mentally and emotionally. Also, I've (we've) made the decision on where to go for the transplant. MD Anderson. Houston is NOT my favorite city but as it's been pointed out to me over and over, I won't be experiencing Houston. I'm sorry that so many of you will be. I loved Nashville but I left Vanderbilt with such a feeling of doom. I walked thru the halls of Vanderbilt as we were leaving literally thinking "dead man walking". I walked away from MD Anderson with hopes for the future. Let me give you some amazing numbers. Stem Cell Transplant patients are put into 5 categories. 5 being high risk, 1 being very small risk. I'm a 2. Vanderbilt has a survival rate of 51% based on 1's and 2's. MD Anderson has a survival rate of 53% based on 4's and 5's. They gave me an 85% chance of survival where Vandy gave me a 45% chance. Where would YOU go??? More reasons...I LOVED Dr. Parmar. She was very calm, matter of fact, smiled, positive thinker, very confident, knowledgeable and just plain human. She hugged me! The transplant coordinator, Chris, was either a PR major or just very charismatic! Loved him! Dr. Parmar's nurse, Yousuf, made me giggle cuz he was so serious and professional. My financial advisor, Alex, was just so personable! Yes, it's a HUGE place. I understand why people refer to it as "Jiffy Lube" and a "Cattle Call" BUT!!! EVERYONE I saw more than once remembered me. The nurse that took my blood at 9 a.m. remembered me at 4:30 p.m. when I had to get more drawn. I can't even imagine how many people she had seen that day. They take patients back there 8 at a time and there's probably 10 stations. It takes about 10 minutes so you do the math. It's so big that you ride golf carts thru skywalks when going from 1 building to the next. The cafe downstairs is probably an acre and a half in size.

The game plan for the transplant is, 100 days in Houston, 4 weeks of which will be spent in the hospital, the rest in the Rotory House. I have to have a caregiver with me at all times ie Marty and/or my sisters. If all goes well, then I come home and go back every 3 months and eventually every 6 months for tests. I "belong" to MDA for 2 years. I can't be around kids under the age of 12 for 2 years = ( BUT I can be around the dogs if they have been to the vet. go figure. I can't play in the mud for 2 years = ( For those that don't know, I love gardening.) I'll survive. Worse of all!!!!! I can't pet a lizard for 2 years!!!! I was so looking forward to getting a lizard! = ) I can't be in crowds for 2 years. OH! My blood type will change if my donor has a different blood type! I've been 0+ for 51 years! I will come out maybe an AB- How weird is that? It's more important to match tissues than blood type.

So, I went to the dentist yesterday to make sure I had no infections (he has to sign this paper for MDA), I don't. I got my PICC Line put in today. I start out patient chemo on Monday for 5 days just like last time. Peggy! This is to keep me in remission. I'm going into this chemo with my best numbers yet. After my numbers come back up and I'm stable, I go to MDA for a week's worth of tests. Then they start the ball rolling on the transplant. ie contact the donor, etc.

For those of you that have told me you are working on Fund Raisers....All I can say is thanks. = )

Got the PICC without the use of Xanax = ) No Xanax for the dentist, either = ) Yeah, I feel good.

I'm sure I've forgotten tons of stuff...

Love you all!

Happy Mother's Day!

It's the night before we leave for Houston and I have been so much more productive this time. I've gotten so much done this past week. Physically, I feel better than I have in over a year. Mentally, I feel almost like I used to. I don't have the feeling of dread that I had before we went to Nashville. Maybe becuz I've heard the worst already. Not that I expected to hear what I heard in Nashville. Maybe it's becuz I've done this once already.

I won't be having any tests this time. The schedule is smaller & simpler. Tuesday at 9:00 I have an appointment with New Patient Registration, 10:00 I meet with my Dr (Dr. Parmar) and 11:00 I meet with the Transplant Coordinator. That's it.

We're leaving at 6:00 tomorrow morning and should arrive around 4:00. Maybe we'll do a little exploring. I haven't been to Texas since 1971 and that was only for lunch in Dallas. Marty hasn't been to Texas since 1978 and that was San Antonio. After the appointments, we have the rest of the day. Then we leave Wednesday around 6:00 to come back home.

I have heard lots of opinions for both Vandy & MD Anderson. Thanks to all of you for your input, research and contacts. I'm just going to go open minded, then come home and make a decision. Gotta go with my gut.

Happy Mother's Day!

Love you all!

Correction...

I misunderstood. The medical expenses are covered at both places. The travel expenses will be covered for the place I decide to have the transplant. I can live with that.

The Sun is OUT!!!

Okay. This is not only to get you guys informed as to the latest but to help me get my thoughts straight.

I found out today that if I decide to go to MD Anderson for my transplant, my insurance will not cover anything I had done at Vanderbilt. If I decide to go to Vanderbilt for my transplant, nothing I have done at MD Anderson will be covered. I'll deal with that later.

I got a call from Vanderbilt this morning (they obviously don't know I'm going to MD Anderson for a second opinion). They gave me a list of things I have to take care of before my second evaluation. Go to the dentist to make sure I have no infections, get my last gyno reports, get a colonoscopy (oh boy!). She also told me they would be checking for illegal drug use, prescription drugs that I don't have a script for, alcohol and nicotine. hmmmm. I will talk to a Social Worker about where I will be staying for the 100 days (other than the hospital) and a Financial Counselor so I can turn over all my worldly possessions. = ) My next evaluation will take 2-3 days as an out-patient. Oh! and more chemo before I go. (Which I was suppose to start last Monday only I decided to check out MD Anderson first.)

Also, MD Anderson called this morning and I have an appointment for next Tuesday (the 12th). 9:00 - New Patient Registration. 10:00 - Dr. Parmar, 11:00 - Transplant coordinator. We've decided to drive to Houston on Monday (10 hours) and back on Wednesday. I decided to just go for the consultation and no tests because of insurance and my main concern is to see how comfortable I am there and if I like the doctor. If I decide to go to MD Anderson they can use my MUGA & PFT from Vanderbilt so I won't have to repeat those tests. I will have to have a bone marrow biopsy, blood work and either a CT Scan, MRI or PET.

Whew. So much information!

So, I had a bit of a meltdown yesterday (probably becuz we've had no sunshine in weeks!) and went to talk to my Peggy. While there, I met with a Nurse Practitioner that co-ordinated transplants at Baptist for 8 years. She was very encouraging in telling me that an exact match is VERY hard to come by and a 4 out of 6 point match transplant is common. Mine is a 6 out of 6 match. That makes me a MUD. Matched Unrelated Donor. So, there's no confusion, I'm having an Allogeneic Stem Cell Transplant. That means I use an unrelated donor. An Autologous transplant is where you harvest and use your own cells. With that you don't have Graft Vs. Host Disease (GVHD). GVHD is what can cause most of my problems. With a 6 point match, my chances are better. I will get GVHD no matter what. The severity is what is scary. Main problems it can cause are the donors cells attack my skin, mouth, liver, eyes...really any of my organs.

So...I decided to go to a therapist to help me get thru this and my insurance company sent me 4 PAGES of names. sheesh. another decision!

Had lunch with Mir today. She is a great cheerleader! "Call them NOW!" I got a lot taken care of. Thanks, Mir!!!

The only thing I have left to do today is I'm waiting for Dr. Weeks to call me back. Have a few questions for him and decide on a therapist. I am so freakin WIRED!!!

Love you all!

Pins & Needles

I just heard from MD Anderson saying they had gotten the referral from Dr. Weeks and I should hear from them by Friday with an appointment date.

Love you all!

So we went to Vandy. Loved Nashville. Very user friendly. Easy access to everything. Lots of good places to eat. Walking is my favorite mode of travel and walking in Nashville is the best way to go. Got there Sunday evening around 5 and as soon as we got settled, we walked. We walked over to Vanderbilt Hospital/Clinic. Walked thru and found our way around. Walked a different way back and stopped at Mellow Mushroom for supper. Had a wonderful Calzone that I couldn't finish. HUGE! Walked back to the Hotel and chilled. My first appointment was for blood work, I can't remember what time but we were about an hour and a half early and it was a good thing cuz we had a flat tire. Got the spare on and headed to the Clinic. Still early. Blood work went fine, I'm used to being a pin cushion. Then upstairs to meet Dr. Jagasia. Met with the research Doc first. He asked me about my AML history. What made me first go to the doc, etc. How much time do I spend out of the bed/chair. Should have given him my blog addy. = ) I can't remember! Anyway, then Dr. Jagasia came in. I'm sure the man is a phenomenal doctor. He's very confident, I've heard good things about him. I hear he's one of the best. But I still feel the sting where he slapped me across the face. I like people to be straight up with me but dayum! No compassion. Very clinical. I have a 40 - 45% chance of making it through this Stem Cell Transplant. IF I do, I have a 60% chance of it causing me long term health issues. What ever my donor is "predestined" to get, my chances of these issues are increased. I can't remember much else. I think I was in shock. Not only by the news but by the presentation. So, we left there and went back to the hotel, I think. It's kind of a blur. Actually, I can't remember what we did. I don't remember supper. I remember breakfast. Okay so the next day, Tuesday, I had a PFT & MUGA scheduled and no caffeine after midnight. great. The MUGA is a heart test. Radioactive something or another thru an IV to watch it go in and out of your heart thru this machine. Really was no big deal. The PFT is a breathing test. No biggie except I was almost over my URI but not quite. Have no idea what the results were of either. Left the hospital and got coffee at the nearest place possible! Got the tire replaced and as much as I loved Nashville, I was so ready to leave it!
Wednesday, I think it was, Peggy called me to tell me that I needed to get some more chemo. It has been 2 months and we don't want the Leukemia taking hold again. okay. This time I'll be in the hospital for 12 doses in 6 days so I'll probably be there 10 days to 2 weeks.
I'm not going to go into all that happened since then cuz it confuses the hell out of me. Yes, chemo Monday (today). No chemo until....
What it boils down to, I decided I wanted a second opinion from MD Anderson in Houston. It's a Cancer Center. They do 600 SCT a year and Vandy does 110. What we're waiting for now is to see if MDA can see me SOON. If I haven't heard from them by Wednesday, I'm to call Vickie (Dr. Weeks' right hand) back. If they can't see me soon, I go with the chemo/Vandy plan which has me doing the transplant around mid June. If they can see me, well, everything is up in the air again. So that's where I am now.

Love you all!