I got a call from Joanne yesterday afternoon informing me that my Tacro levels were elevated. So, instead of taking it twice a day, I skipped last night, both doses today, both doses tomorrow and I'm to resume on the first of the month but at a slightly lower dosage. Maybe that explains why I've been feeling the way I have. At least I've been sleeping better. I usually take a nap during the day and then, with the help of the Ambien, I sleep much better now at night.

My diet is still light as my stomach is still not ok. But it also seems to be improving somewhat and each day I try to eat a bit more "normally".

Thank you all for your ongoing support and prayers.

Just got back from the hospital. Thank God everything is good. I got a unit of platelets and my next appointment isn't until next Tuesday. Dr. Schuster feels that the stomach issues are GvHD and not from the foods I've been eating. Still, I have to eat lightly and keep them posted as to any changes, etc. The meds are still making me crazy. Between the Tacro and the prednisone, I'm practically jumping out of my skin. So, I'm counter-acting them with Klonopin to take the edge off during the day and the Ambien-CR at night. It is definitely an improvement but still difficult for me. I feel so out of control of my moods and emotions. I keep repeating my lifelong mantra....PATIENCE, PATIENCE....definitely one of my shortcomings. But I am trying. Mom's putting up a big pot of chicken soup, my lifesaver. Can't wait. (I know...PATIENCE).

Thanks for hangin' in here with me and for all the good thoughts and prayers coming my way.
Pray for good health & peace.

Hi. I haven't been feeling very well for the last few days. The prednisone makes it difficult for me to focus and I feel very edgy and my hands are shaky. Also, my stomach started bothering me again and so I'm on a clear liquid diet.

I have an appointment with the doctor tomorrow morning at 9. I'll report afterward.

T+32

I had another good appointment today at the hospital, thank God. They changed my dressing and flushed the catheter. Although my platelets are actually at a decent level, I did receive one unit of platelets. Normally, as long as the platelet level is over 10,000 they don't transfuse. But because of the ulcer that they found during the colonoscopy, they want to keep my platelets higher (around 35,000) to prevent a bleed. So, although I did receive platelets, my counts are good.

The other good part was they decreased my evening Prednisone a bit more. Hopefully that will help me sleep better. They also gave me a prescription for Ambien CR so I'll probably try that. The Trazadone and the Klonopin just don't do it for me. I do fall asleep, but I just can't stay asleep. Maybe a couple of days with the Ambien will help me get on a normal sleep schedule. (I really HATE taking all this stuff!!).

I told Joanne -- the nurse practitioner (my doc's in China) that I've been feeling more tired the last couple of days than I had when I first got home. She feels that it's due to a combination of factors and is quite normal. First of all, there's the elation of being home when you first get home. After a couple of days, reality sets in. Also, I know I keep trying to focus on getting stronger but the truth is, I spent more than a month in the hospital. My body just hasn't got its strength back yet...no matter how strongly I try to will it. Add to that the fact that I'm not really sleeping and well, DUH. So, I decided that I'm going to try to go a little easier on myself and rest when I need it, not push it so much.

Thank you Shelly for the delicious dinner -- LATKES included!! And thank you so much to the Saufers for their incredible foods and sinfully delicious baked goods. And to Princess Evelina, what could be better than chocolate covered pretzels?? Not much, I think. It was wonderful seeing you and MH. Thank you for visiting.

Wishing all of my loving friends and family a wonderful Shabbat, a beautiful weekend, good health and thanks for your continued love, support, prayers & good wishes.

T+31

Good morning.

Unfortunately, another sleepless night. I don't know exactly why. Perhaps, like my friend Marsha, it's from the meds. They make it difficult to concentrate and make me feel somewhat jittery. It's early now but I just might try to catch a few ZZZZs before showering, dressing and starting my day. I did make my own breakfast this morning. I was thinking about breakfast all night long! More and more I'm doing things for myself. Although I'm feeling stronger and stronger, it's a bit deceiving since I do get tired very easily. (Again, a side effect of the meds, which give you a false sense of well-being). Luckily, the doctors were pretty adament about NO HOUSEWORK. So, I'm only doin' the good stuff!

Yesterday, the visiting nurse came to flush my lines and change my dressing. Actually, she flushed my lines and supervised Mom changing the dressings. Mom was a pro! In fact, the nurse asked her if she was a nurse or a doctor! Next change will be on Friday and will God willing be done at the hospital.

It's cool and windy but sunny. So, perhaps I'll get out a little bit today. I'm expecting a couple of guests again. I'm really looking forward to seeing my friends Beth & Esther. (Better known as Buford/Bunky and Princess). Also, I've been craving potato latkes...I mean, it IS after all Chanukah! I had a few of Shelly's yummy latkes on Sunday (technically not YET Chanukah), so I'm due.

Thank you so much Gail for last nights dinner. It was soooooooo good...we had a feast!

Illana, the unsung hero...Illana's "behind the scenes" work kept the entire machine running. I would not have been able to stay positive and hopeful without everything she did...searching the four corners of the earth to satisfy my every craving when nothing tasted good to me...back and forth to the hospital on a daily basis, bringing dirty laundry/clean clothes, food for mom to eat, MIMIs when I needed them, hats and kerchiefs to cover up my jelly bean head, surprise balloons, teddy bears, lanterns to decorate my room, flameless candles to decorate my room. My hospital room was an attraction to all of the doctors and nurses because of her. And you can't imagince how "spirit lifting" it all was. AND all with her own household to run and her own children to care for. And NOW, organizing all of my meals and coordinating with everyone wanted to send in...AND....(as if it weren't all enough)...she would GLADLY have been my stem cell donor. There is no sister more fortunate and loved than I. Except for her. I love you so much and don't, for a second, think that ANYTHING is not appreciated. I know how difficult a time this was for you but you came through like a trooper and made it all ok.

Thank you all for following along and for your prayers and good wishes. Every day is a miracle.

T+30

Good morning. I'm just waiting for the visiting nurse to come. Afterward, I think I will take a drive with Mom with get new eyeglasses. We'll see how that goes. I think I'm feeling up to it. This afternoon, I'm expecting some visitors. Can't wait!

A gazillion thanks to Doba and the Isaacs family for last night's scrumdelicious (my word) dinner.
A gazillion thanks as well, to the Saufer and Strick families for the neverending delicious dinners and pastries.

To those who are sending beautiful flowers, thank you so much. Just a reminder, I'm not supposed to be in their proximity. No matter, tho. They look beautiful in Mom's room.

I'll update later, after my "big day out".

UPDATE: "Big day out" cancelled on account of the rain. We'll try again.

T+29

Good morning. Today I became a little more independent. I prepared my own breakfast, taped up my port by myself, took a bath, washed my hair/head. Of course, Mom was standing by at the ready just in case I needed anything. But I got dressed and Thank God was able to do more than before.

Didn't sleep too well last night, but I don't really know why. I think because my daughter was out late and I just couldn't really sink into it. I'll probably take a small nap today.

I've been feeling a little bored and maybe a little cabin fever. That's a good sign! Unfortunately, I really can't concentrate very well. I'm pretty sure it's from the steroids. So, it's not easy to "get into" anything. Usually I'd be knitting, crocheting, reading, etc. But I just don't have the wherewithall to sit and do. I've been watching so much TV that if anyone needs to know channel schedules, please do get in touch. I've got the lineups in my head.

I'm looking forward to seeing a few visitors today. As I get stronger, it gets easier. Thank you again to those sending in meals. (The ziti was amazing). Thanks to you all for your comforting words and prayers and support.

T+28 Four Weeks!!

Brrrrrrrrr! Just got home from the hospital. The wind chill is 1 degree F. Really freezing, but I bundled up real well and it was fine. David went out and warmed up the car before we left so it was really comfortable and ok. My blood counts were good. I was expecting to be transfused, but I didn't need it! It's truly a miracle. The doctor made some small adjustments in my medications and I'm to follow up again on Friday morning at 9.

Illana drove me and Mom and we were in and out of there in no time. And THEN...she gave me two containers of chicken soup!! I don't know what happened to me during the transplant, but I just can't get enough homemade chicken soup. I'm surprised that that isn't one of the meds on my long list. Thanks, Lan!

It's so true that being home really helps in recovery. The hospital setting is no place to get better. First of all, there's the sleep issue -- they just don't let you sleep. Then there's the fact that you're so tempted to lay in bed as opposed to sitting in a chair. It's just more comfortable. So being home, you really start moving around more, sleeping more, participating in day to day stuff. Then there's the food. Hospital food.....need I say more? It makes a huge difference. I can really feel the difference every day.

Special thanks to all of you who are cooking and calling and visiting and caring and loving and praying.

And extra special greeting to Kerry! I was so sad that you had gone and I didn't have the chance to see you to thank you and to say goodbye. I hope you're vacation is all you hope it would be. I'd love to stay in touch. You made such a difference! I'll try to contact you through the hospital. Best of luck with the cardio fellowship. I'm sure you'll excel at anything. You're a very special person and a wonderful doctor.

To my Team of Docs, Bita, Nurses, Nurses Assts...your devotion, attention, knowledge, caring and attitude made the most difficult time of my life much less trying than it would have been. Your positivity and encouragement enabled me to stay positive and kept me from being discouraged.

I'm tearing up too much now. More later.

T+27 Home and finally sleeping

What a difference a good night's sleep makes! The Trazadone that they gave me to help me sleep just never really did the trick. Last night I took a Klonopin and slept the whole night through. WOW.

Weez, that sorbet you made me was incredible! PERFECT! It tasted delicious even to me with my compromised taste buds. You're the best. I love you so much and I appreciate all the work you did to make it perfect for me.

I am having some visitors trickle in. Gotta take it slow. But it's wonderful to see my friends and family after so long.

Visitor at the door. Will update later.

T+26

What a beautiful day! Cold outside but warm and comfy in here. Still not really sleeping well, but I have to try to get myself on some kind of normal schedule. It'll take a few days, I'm sure. I didn't nap today (for the first time). Just read a book for most of the afternoon. So nice to spend a day like today at home with my family. It was very restful and cozy. I'm feeling tired and weak, but stronger every day.

Dinner and lunch were amazing! There was slim pickins' in the hospital and having home cooked food (along with my steroid-increased appetite) was like a dream come true. Thank you Toby for the delicious sides!

Thank you to all of you who sent Challah for Shabbos...those I know, as well as those I don't.

The visiting nurse came last night -- kinda late because of the weather. They showed us how to change the dressing on my chest catheter and how to flush the lines. I think we'll need another couple of lessons before we've got it down pat, but I'm sure it'll be ok.

Thank you Gitti & Helen for that wonderful visit. It was so good to see you.

It's still hard to believe that I'm home...that the transplant is behind me. I know there's still a long road ahead, but I feel like the major hurdle is in the past.

Thank you all for hangin' in here with me. The road is easier traveled with all of you.

T+25 HOME

Thank you all so much for expressing as much delight as I'm feeling. Sleeping in my own bed was indescribable. Thank you to those who sent me beautiful flowers. Unfortunately, fresh flowers are off limits, as are live plants, etc. That's ok. They're now decorating Mom's room. I came home to a house decorated with streamers and balloons. How wonderful! Even though it took us about two hours to get home from Manhattan and I just about made it to the bathroom in time!!!

It's wonderful to be sitting here in my room, watching the snow fall.

I am honestly overwhelmed by the amount of love and caring you have shown me during this period. Crazy that it took something so drastic for me to realize how much love there is around me.

I have an appointment with the doctor on Monday at 10am. I will probably need transfusions at that time. This will go on for a while. I just don't want to end up back in the hospital. They told me on my way out that it's not uncommon to be readmitted after this procedure. I understand that...but I still don't want it.

Trying to get into some kind of normal routine here. I suspect it may take a while. But I'm looking forward to this Shabbos (Sabbath) at home with my family. I still can't really believe I'm here.

Please, keep me in your prayers and have a wonderful Shabbos/weekend.

I'M HOME!!!!!!!!!!!!!!!!

I just got home. The let me go at around 3PM this afternoon. David came to get me and I can't begin to tell you how good it feels to be here. I am so grateful and feel so blessed. Thank God for all of my amazing friends, family, doctors, nurses & all of you who showed how much you care.

T+24

Good morning. I didn't get much sleep last night so I'm feeling a little tired this moring. Unfortunately, they gave me my steroids very late last night and I'm sure that's why I couldn't sleep, even WITH the Trazadone.

After disconecting me from the IVs yesterday for my shower, they never reconnected me. Instead, I've been on oral meds since then. So far, so good. I just can't believe how many pills and capsules I'm taking. I'm taking Tacrolimus and both steroids, Norvasc & Hydralazine for HBP (from the Tacro & steroids), Nexium and Actigall, Valtrex, Voriconozole...and those are just the ones I can think of. Oh, yeah, also insulin for my blood sugar which is increased from the steroids.

I'm going to get one unit of blood transfused today and maybe platelets, too. I haven't seen the platelet count yet. The downside to getting transfusions is that they give me Benadryl with it and that knocks me out and makes me feel hung over all day.

I want to congratulate my donor/hero/brother Avram. I love you. I'm so proud of you! You're the best!!

And also my Mom...there are no words to describe how grateful I am. There is no better example of a mother than this woman. She's been living in my hospital room for almost 5 weeks. I can't imagine how difficult this must be for her but she's constantly upbeat, smiling, encouraging and supportive. I love you, Mom.

I'll update after I see the team. Thanks again to all of your for all the good thoughts & wishes & prayers.

UPDATE: I'm currently getting a unit of blood. Afterward, I'll get a unit of platelets and then some Pentamidine prohylaxis anti-pneumonia.

T+23

Good Morning,

I'm feeling a bit stronger again today. The doctors came in this morning and told me that they are planning on taking me off the IV meds and trying to get the oral meds going. If all goes well, that should help get me outta here.

It's so nice to hear from so many of my friends at the YIO. I thank you for your good wishes and prayers and for thinking of me.

I'm not really seeing many visitors here at the hospital as my immune system is compromised. Once I get home, I'll be seeing visitors on a limited basis. Thank you to all who asked to come see me.

My blood counts are looking good, Thank God. I'll be monitored very closely for the next few months, at least.

Please keep me in your thoughts and prayers. That's what keeps me going.

P.S. Sunshine, I just got out of the shower and I'm wearing my beautiful new PJs. Thanks so much! I love them! xoxo

T+22

Good morning. Let's here it for another (almost) decent night's sleep last night! I think I finally figured out how to work it.

The doctors were in a few minutes ago. They said that everything is coming along well. We need to clear up the diarrhea before I get to go home but it looks like it's clearing up with the help of the steroids. I didn't get platelets transfused yesterday but they said that I will today. Again, this is to prevent bleeding from the ulcer.

Once I do get to go home, I'll be coming back twice a week to see the doctors. The chest catheter stays in for future transfusions, which are expected. The doctor visits gradually taper off as do the transfusions. The thing that I really don't want to happen is a re-admission to the hospital. That's why I'm being very patient with going home. I'd rather put the time in now than have to come back.

I want to wish special Get Wells to Autumn, Marsha and Nava.

OK, they just hooked up my platelet transfusion along with a shot of Benadryl. So, I'll probably be drifting off to sleep in a couple of minutes. Thanks for being there. More later.

T+21

Good Morning. Well, today's 4 weeks in the hospital and, as nice as the view may be, I think I've had enough. But because I'm still on IV, I can't leave just yet. We have to wait until I can switch to oral meds and that still depends on the condition of my gut. We're still waiting for the pathology reports, but the specimens were taken on Friday afternoon and not much gets done over the weekend. Hopefully we'll have some answers today.

I got my first decent night's sleep last night. Even though they wake you at 1AM and then again at 5AM, I was able to get a few real sleep hours in. I'm planning on walking the halls today, trying to regain my strength. It's getting better every day.

My blood counts are going up. I think I'm going to get a platelet transfusion today but that's not unexpected. The platelets are the last components to come up. They want to keep them up pretty high to reduce the chance of bleeding from that ulcer they found.

UPDATE: I just returned from an ultrasound. It seems that there are a number of cysts on my left ovary. They are nothing to worry about but should be followed up in a few months. This may have contributed to the abdominal pain the other night and morning. They're really covering all the bases.

I'm so grateful to all of you for your constant support. Knowing that you're out there, reading my blog, caring and praying for me makes me feel so good. Thank you.

T+20

Hi. Things are moving along. The steroids seem to be working. I'm still on a liquid diet but the doctor said he's just being conservative. The steroids make me feel kinda jittery. I've been spending most of the time out of bed. I haven't really been sleeping much at all. But I'm feeling stronger every day and am looking forward to getting home.

Autumn, take your time, rest up and heal ... THEN we'll talk meatballs.

Thank you all for your thoughts and prayers. You can't imagine how much they help.

T+19

Hi. The sigmoidoscopy turned into a colonoscopy. They found a bunch of inflammation and an ulcer. These are caused by the chemo. They biopsied the tissue to rule out GvHD (Graft vs. Host Disease). Until the pathology report comes in, they are treating it as such. So I'm on Prednisone. The good part is that it's making me hungry. Luckily, I had a delivery of the finest homemade chicken soup this side of the Mississippi. (Can't begin to thank you enough, G). So far that's really all I've eaten since the procedure. They have me on clear fluids -- which is fine because I don't really want to eat the hospital food.

I haven't had any more pain, Thank God. I've been spending less time in bed. Sitting in the chair or walking the hall. They put me back on IV Tacro (instead of oral) because of the inflammation and absorption.

Happy Birthday Bunky!!!

T+18

I finally had my CT scan at around 7pm last night. I still haven't heard the results to it. Thank God I no longer have any pain but they've still got to investigate it and figure out what caused it. I'm scheduled for a sigmoidoscopy this morning, but first I have to get transfused with 2 units of platelets. So, although I'm feeling better, I'm going to be laid up for at least another day or two. I will update the blog as I receive information.
Thank you for your continued encouragement and prayers.
xoxo

T+17-A little bump in the road

Leah developed serious abdominal pains last night. They've been giving her morphine for the pain. Last night she had x-rays which showed no obstructions, B"H. She'll be going for an abdominal cat scan soon. Please keep her in your thoughts and prayers! Numbers are, B"H, still going up.

Thank you all for your comments. They mean so much to Leah and the rest of the family!

P.S. Refuah Shelaymah to Devorah Layah and Autumn
Love,
illana

T+16

I'm sitting here and waiting for the nurse to come in and tell me what today's counts were. In the meantime, things have been changing. They switched me from TACRO IV to mouth yesterday. That's one less drip I have going. Tacrolimus is an immuno-suppresant. I'll be taking that one for a while. They've also discontinued the TPN drip. That was the IV Nutrition I had. There's only one stipulation for that one, I must eat and drink. Staying properly hydrated is crucial since the Tacro and other drugs can harm the kidneys. I'm still getting IV anti-biotics, IV anti-fungals and IV anti-virals periodically during the day. These will all be switched to orally administered drugs. They've also cut back significantly on the Zofran (anti-nausea) mainly because I haven't really been nauseaus. We'll have to see how that goes.

If all goes according to plan, I should be home for the weekend. I'll have to see the doctor twice a week for a while, and then it starts tapering off. Once I get home, though there will be some strict rules regarding what foods I can and can't eat. Fresh fruits and vegetables are off limits. Anything cooked in a home kitchen -- as long as it's cook well -- is ok. No restaurant foods. No supermarket prepared foods. (Autumn, I'm pretty sure your meatballs are on the OK list! G, your chicken soup is there, too.) I'm also going to have to limit the number of visitors until I get stronger. Mom (the warden) says that "visiting is by appointment only and no longer than 20 minutes."

OK. My counts came in and my WBC is 2.0 -- the same as yesterday. They told us that there would be plateaus. I also did a lap around the hall. My doc said he wants 5 laps today. That's it for now.

T+15

Good morning. I'm feeling stronger today. Yesterday, I slept for practically the entire day. Mom had a theory. She said that the reason I was so exhausted was because all of my body's energy was going into making new cells. Well, let's hear it for Mom! I woke up this morning and my WBC count was 2.0!!! It's amazing.

The doctor said that I must start eating so, I had a few spoonsful of hot cereal this morning. There's a constant metallic taste in my mouth so everything tastes equally horrible. But if eating is a pre-requisite to going home, then eat I shall.

Speaking of going home...the idea is terrifying and, at the same time, very exciting. I can't imagine how it will be. I know it's going to take a long time until I start getting some real energy back and I'll be doing a lot of resting. I'm so lucky that Mom said she's going to come stay with me. That took a ton of worry off my mind. I'll be going home with the central line still in place that will need special care. Also, all of the meds that I'm now getting IV are going to have to be continued by mouth. I don't think it's going to be an easy road, but I'm up for the challenge.

Thank you for your patience on the days when I post 3 words! And, please continue to keep me in your prayers.

T+14

Hi. Too tired to write now. All's ok. Getting better every day. More later.

T+13

Good Morning. I'm thrilled to report good news. As of this morning, my WBC is 1.1! This is BIG NEWS! This means that my marrow is doing it's job well. If it's still over 1.0 tomorrow, they can take me off some of the IVs that I'm on and hopefully, that will result in the return of an appetite.

Mom & I are very excited. Your prayers mean the world to me. They are the number one reason for my positive outlook and my ability to "get through this." I can't thank you enough. Please keep up the good work!

T+11

Hi. Sorry I didn't write earlier. Everything is going along well. My white count seems to have started to come back a bit. That's a good sign. I'm still very tired and also very bald. Wishing you all a wonderful healthy weekend and a good shabbos.
Leah

T+10

Good afternoon. OK, so I never went for that scan yesterday. I was feeling pretty rotten and it just wasn't that important at the time. I just had a chest x-ray this morning and though they still want that abd scan, I think it's going to have to wait until tomorrow.

Yesterday, I also received 1 unit of platelets and 2 units of blood. I will be getting platelets again today and probably everyday for a while. I also started the IV Nutrition last night. It kinda takes the pressure off ... but pressure on my bladder is another story. All night long, I had to relieve that pressure every hour.

Also, they put me on Opium Tincture, yep, that's right Sunshine, Opium Tincture to stop they diarrhea. Unfortunately, you take this liquid by mouth and I've never, NEVER, NEVER, EVER tasted anything so vile in my life. Picture, if you will, a tall stack of burning tires. Now, picture it the next day, when it's just cool burnt tire liquid. OK, now drink it. So, I don't really want to continue with it but there are only a couple of other options and it's imperative that they bring the diarrhea to an end before "the engraftment". Because after that point, every symptom is suspect as GvHD (Graft vs Host Disease).

Next news item...the inevitable thinning of the mane. As you can probably see in the photo below, bandanas are the newest accessory in my wardrobe. All I can say is, I'm no Cue Ball but it's bailing, and fast. Besides that, Illana is thrilled that I'm finally covering my hair.

I just got out of the shower and I feel so much more refreshed. Unfortunately, what was a beautifully sunny day is becoming rather overcast.


I'd like you to meet my new MIMIs that Illana just brought me.

T+9

Good Morning. It looks like a beautiful day. I'm pretty tired. I wasn't able to sleep well last night. Yesterday I received a unit of platelets and then again last night I received a unit of blood. Thankfully, I'm usually able to get a couple of hours of sleep during the day. I'm having trouble with nutrition. I am simply unable to eat. Besides the fact that I've got no appetite, I have this awful taste in my mouth. So ingesting is just out of the question. So, I think that today they're going to start me on IV Nutrition. I really wanted to hold out and see if I could just do it myself...like force myself to start eating but, when the doc mentioned how important it was for my body to have the proper nutrition to turn the corner and start to heal well, that's a pretty strong argument. I'm also scheduled for an abdominal scan this morning because I've had some pain there. All these meds running through me are very tough on the liver. Now you probably know more than you wanted to, right??

Thank you again for all the positive energy I feel coming my way, for your prayers, your thoughts of love and for your wishes for my recovery, for your cards, etc. I am truly blessed.

Hi From Me

Hi. I know I haven't written in a while. Some days I just haven't got the strength. I'm grateful to Mom & Illana for keeping my blog up-to-date. I was transfused with a unit of blood last night and I guess now I understand the whole "vampire" thing. I mean, I felt instantly stronger this morning. But between the weakness and the fever yesterday, I think I could say it was definitely NOT one of my better days. I've been out of bed a couple of times today and was sitting in a chair...definite improvement.

I am overwhelmed by the comments you leave here. I would guess that most people aren't even aware of the impact they've had on others. I'm deeply, deeply moved by your thoughts of love and wishes for speedy recovery and, most of all, your prayers. Please keep 'em comin'.

(((((((((((((((((((((GROUP HUG)))))))))))))))))))))))))

T+8

Good Morning. This is the start of a new day and we are hoping to feel better today. Yesterday afternoon and last night were very difficult. Leah developed a fever after I wrote on the blog yesterday and when it spiked she would be freezing and begin shivering. She also needed a blood transfusion last night so between both of these events we had a very busy nite and no sleep. But, as I said, today is a new day and we are hopeful. We are waiting for the M.D.'s to make rounds. She is getting two strong antibiotics. One of them is Zosin, the other I can't remember. I will keep you updated as news breaks. judie

T+7

I am sorry to disappoint you but it is me again. Leah is sleeping as much as she can and hopefully very shortly she will be able to say "Mom, I think I feel a little better. Those are the magic words I am waiti;ng for. In the meantime, she feels much the same as she did yesterday. I hope that soon she will be speaking for herself. Tootles. Judie

T+6

Here I am again instead of Leah. Things are about the same as yesterday. That being that the numbers are still in the process of bottoming out and the nausea and diarrhea are still persisting. But.......in spite of all of this, we are told that things are still on track. Each day we wait for the results of the lab tests and one day soon we will have cause to be happy. You keep up the good work at your end. Judie

T+5

Shavua Tov. Leah is unable to write to you tonite because she is feeling real rotten. We are told that this is the way she is expected to be feeling. It doesn't make it any better for her but it is reassuring that the process is going as expected. Now we just have to wait for the numbers to bottom out and begin to rise. Hopefully that will be in the not too distant future. She looks forward to your comment and prayers and good wishes. Keep up the good work. Judie

Friday

Hi. Sorry I really haven't written too much lately. As has been previously reported, I'm pretty tired, my stomach is bothering me and I'm eager to start seeing things going the other way. My counts are still dropping - almost bottoming out. I'm eager to start feeling stronger and I know it's just a matter of one day or another day.
Thanks to all of you, far and wide for your encouraging words, thoughts and prayers. A special thank you to Amy from Texas for a very special teddy bear!
Mom went home yesterday afternoon and will be coming back in a little while. I can't imagine going through this without having her here. I know that there are many people who go through this alone, and I pray for them to have the strength it takes. David spent the night here. He doesn't look too worse for the wear.
More later.

Thanksgiving Day

This is Illana again. Leah's pressure has been very high which is a side effect of the medication. They sent her for a cat scan but thank G-d that came back o.k. They increased the medication to lower her pressure. She has a horrible taste in her mouth. Basically, she feels pretty rotten from the side effects but she's doing o.k. The doctors say that she's on target.

Your comments, good wishes, and prayers are so appreciated. Leah apologizes for not having acknowledged them all. She loves every single one! You can't imagine how much it means to her.

T+3

Good morning. I had a pretty good day yesterday. In fact, I didn't sleep at all during the day and so last night, with some pharmaceutical assistance, got what around here goes for a full night's sleep. My bood pressure has been pretty high and that's been causing me some concern. But I just learned that it's a common side effect of one of the drugs I'm taking. The "TACRO" is anti-GvHD (Graft vs. Host Disease) I'm on a 24-hr. drip of it now and will have to continue taking it in pill form for at least 3 months. At least now, knowing that the HBP is from that, I'm not as worried about it.

I just took a shower and whew! that'll make you feel so much better! And it's not like I haven't showered in a week, either. I've been showering at lease every other day, but just showering makes everything feel better...that and the fact that it's a sunny day. Ahhhhhhh, finding joy in the easy things :)

I'm still using my internal imaging system to help get those new stem cells moved in and up and running in their new space. I've got this entire cartoon family assembly line visualized and, though comical, it's helping me to get the job done.

Thank you all for the cards and gifts and prayers and wishes. You never let me forget that I'm not alone within these 4 (albeit spacious, riverview) walls. And to so many of my "long lost" folks out there, it's great to hear from you, especially now!

More later.

The Photo of the Hero

I just want to post this photo which was taken by another donor's father. Avram had been hooked up by both arms for 4+ hours. From what I understand, he got to spend the time with some pretty amazing people -- amazing like himself, that is!

T+1

Don't those flowers look real??


Good morning. I'm feeling a little stronger again today. One thing I realize that I have not yet mentioned until now is the quality of the care I'm getting here. It's as if each nurse and nurse's assistant is hand picked for this unit. Although I know that they do rotations on other units as well, it just seems like here we have the cream of the crop. They are so eager to answer any questions and are at the ready to find the answer if they don't know it. They constantly reassure me and are forever asking if there's anything at all I need to make me more comfortable. And, perhaps most importantly, to hold my hand and tell me "Hey, you're doing great!"

Then there are those on the housekeeping and dietary staff. Every person who walks into this room greets me pleasantly, asks how I'm feeling, and senses if it's ok to continue on into a conversation or just go about their work for now.




Now that the chemo is over and the transplant has been infused, we have to load my body up with anti-rejection drugs, anti-biotics, anti-fungals. Lots of antis. Those are in addition to the anti-nausea. Well, I'm ready. Let's go! This is a photo of my doctor, Michael Schuster and nurse practitioner Bita Jalilizeinali. They're the one's that are pretty much running the show here. They sure look awfully friendly, don't they?

Monday Night

Hi. I'm back. My thanks to Mom and Illana for filling in for me while I wasn't feeling quite up to it. Today, thankfully, was a pretty good day. I'm feeling less nauseaus and a little stronger. I've lost track of the names and numbers of drugs I've taken either by mouth or infusion over the past few days.

Now, 9:00 on Monday Night, the chemo treatments are all behind me and so is the transplant. I think I slept through the transplant today but it's nice to know that the rest of the family was here to witness it. I'm still very confident and I'm using every imaging, biofeedback, relaxtion exercise etc. that I know to get it all goin' on the way I know it's going to.

Sorry for slackin' off the past coupla days. I've got to focus my energies inside right now. But you have been loving, loyal & supporting and I can just feel it. Thanks again. More later -- I hope -- with photos.

Transplant Day

This is Big Momma. Leah is really feeling like crap today. The doctors made rounds this morning and said that she was right on schedule as far as her lab numbers are concerned and also the way she is feeling. At this moment Avram is downstairs in the lab where they are harvesting his stem cells. I went downstairs to see him during the procedure. He seemed relatively comfortable but tired. He was trying to grab 40 winks. The bag containing the stem cells that have already been harvested appears like tomato juice. I think the transplant will probably take place at approximately 3 PM today and will take anywhere between 1 - 4 hours. After that we just wait for those little critters to take up residence in Leah's bone marrow and begin to be fruitful and multiply. Thanks to all of you for your prayers and good wishes. Keep it up. Leah loves all the feedback. Regards Judes

Sunday T-1

Hey Again. I'm feeling much stronger than I had for the last day and a half. Friday's new chemo really knocked me for a loop. Within an hour after the infusion, I had really heavy waves of nausea, chills, sweats, I mean felt really, really bad. I was given anti-emetics (anti-nausea) and suffered uncomfortably through most of Friday night. Saturday mornings lab results should that the counts were falling as they should as a result of the chemo, but my red count went low enough as to warrant a transfusion. So, Saturday, besides feeling the effects of Friday's treatments, and being tranfused I had to receive yet another treatment of the same mix from Friday. Part of the treatment is to LOAD me up with IV fluids. I felt so bloated. Saturday also brought on the infusion of a new drug called Tacro which help keep your body from going into an auto-immune response to the cells coming in. So, imagin if you will, an IV pole with 5 bags all running at once, and you can't sleep, and you're feeling nauseaus, and you can't eat or drink....that pretty much sums up the way I felt yesterday.

Thank God today's a new day. Although I'm still not sleeping well, they've got the anti-nauseau medicine under control. I drank a little bit of tea and ate a piece of banana and I also took a shower.

Saturday Night

I hate to disappoint everyone. I know how many fans Leah has but it is now a little after 7 on Saturday night and I, Illana, just arrived at the hospital to find Leah not nearly as perky as I was hoping to find her. She's not up to writing now so I told her that I'd just give her fan club a quick update. As I write, she's receiving her last chemo. I think the chemo's finally starting to do what it's supposed to. She had to receive two units of blood today because her blood counts dropped. She's nauseaus, fatigue ...etc.

Hopefully, she'll feel better tomorrow and be able to update you.

Thanks for all your prayers and good wishes.

Love,
illana

T-3

Good morning,

I had my third Fludarabine treatment last night. I'm feeling very tired today. It's probably a combination of the treatment, my disease and the fact that I probably got about 3-4 hours of sleep last night. I did take Ambien but, I don't know why I'm not sleeping...even in between being woken up for vitals, etc.

Some time today, we add the second drug to the chemo mix. I will be getting infused with Melphalan at some point. As I understand it, I need to get really hydrated IV before the Melphalan. So, they'll be giving me a couple of hours of fluids before the infusion. Then, tonight I get the usual Fludarabine again. Tomorrow is the same regimen as today. So, to recap, 5 days of Fludarabine, the last two combined with Melphalan. Then Sunday -- no chemo. And Monday -- the transplant.

To my friends and family who are reading this blog and following along and commenting, I want to thank you again. I know I haven't acknowledged you all, but I totally appreciate it. Just to acknowledge a few of you...

Brad & Jen, keepin' the faith in San Diego. Enjoy the game Sunday and hoist one to me, wouldja?

Susie Mouse, Alice & Harold, Doba, Autumn ...my sincere thanks for your thoughts and prayers (and Meatballs).

Deena, Keith, Shelly...There are no adequate words to convey my gratitude to you guys for your constant support, love & tefillot. Thanks for everything.

Robyn, The Office Crew...I can always count on you guys. You're always there for me, caring and praying.

Rabbi Zalman & Chanie...Who else has a Rabbi/tzen/Comedian to visit them, inspire them, cheer them, L'Chaim with them (or their spouse), and to keep their skin so soft, to boot. Your kindness and caring know no bounds.

CFL...I'm sitting here trying to find the words to write to you, but they're just not coming. They will. And when they do, I hope you have the time.

Illana, my heroic sister -- willing to give me her stem cells, and feeling oh so rejected -- just came in with TA-DA Dunkin' Donuts Coffee Rolls. Oh Man! I'm feeling perkier already.

I'll try to update later, before Shabbat.

My Big Brother, Avram

This is my big brother, Avram. Tonight he is starting to take injections which will stimulate the release of stem cells from the bone marrow into the blood stream. He will be injecting for 4 days and then on Monday, will come and donate those stem cells to me.

Ave, I'm sorry you gotta go through it. Who could ask for a better brother? I love you so much.

Thanks for the beautiful flower, Keith.

For those who asked my Hebrew name, it's Leah Rivkah bat Yehudit Chana.

T-4 and Counting

I had my second treatment with the chemo last night -- identical to the first. It went just fine. I didn't feel anything. Luckily, I've got no nausea, just fatigue and I've had that for months, anyway. This drug, the Fludarabine has a very low incidence of hair loss as a side effect. The next one, the one I start tomorrow night, supposedly has a greater incidence. That's why I cut my hair. Either way, though, it's not a big deal to me. I've got a drawer full of newly washed bandanas just in case. I took another Ambien last night and so I did get some sleep, but not too much. They check your vitals at 1AM and then again at 5AM. I think I did pretty well between those hours. In addition, the newly learned information concerning my need to hydrate caused frequent trips to the bathroom.

There didn't seem to be much change in my blood counts after the first treatment. I'm waiting to see the results today. Then again, I had my first treatment late Tuesday night and the blood was drawn very early Wednesday morning so there was not much time for change to occur. The counts should start dropping. When they do, that's when I and those around me need to take added precaution against infections and viruses. The room I have is double doored. Those entering should not open the interior door until the one behind them has closed. In the anteroom, there are coat hooks, a sink, Purell and gloves. Visitors, including medical personnel, "gear up" before entering the inner door. The room has negative pressure which helps prevent cross contamination. But it is very dry in here and I'm going through my moisturizer like it's goin' out of style.

I am going to have to follow a Neutropenic Diet. They gave me a printout. There are an awful lot of "not alloweds" on the list. Some of my favorite foods, actually. For instance, no Feta cheese, Brie, undercooked eggs, lox, sliced raw onions, salsa, chocolate with nuts. As far as I can see, coffee and Dunkin Donuts are not yet disallowed, so it's ok.

On today's agenda....hmmm....I can't seem to think of anything interesting. There will be meals, naps, television, perhaps a visit by the family. Maybe I'll do some knitting today. Oh, and I do tend to spend some time in front of this here computer contraption. I know I haven't acknowledged every comment from every one of you. Please don't for a moment think that your comments go unnoticed or unappreciated. They make my day!

I had a chest x-ray today. Besides that, it's been a very quiet day. Illana was here earlier and then Keith was here. Illana keeps on bringing the most decadent snacks. Thank goodness Mom is here to help me eat them. Keith brought me a beautiful stuffed flower (no real plants or flowers permitted). I'm due for my second chemo tonight. I was feeling pretty well for most of the day but then, after lunch I fell asleep and now I'm just so tired. I'll try to update later.

UPDATE: it's 8:20pm and a little while ago I began the same regimen as yesterday. I'm almost finished with the pre-chemo infusion and the nurse will be in momentarily to set up the Fludarabine. They told me to drink lots and lots of water. Needless to say, I've been spending more and more time out of bed and in the bathroom. Still feeling pretty tired. That's a normal side effect.
David's working late tonight so I won't see him.

I am overwhelmed by the outpouring of love from my friends and family. Thank you all so much. It really makes all the difference in the world. More tomorrow. Good night.

BTW, notice the deliciously smooshy blankie on my bed. Thank you Helen & Gitti. My only concern is that someone will walk off with it. EVERYONE says how wonderful it is!

T-5 (Wednesday)

I had a pretty decent night's sleep. Perhaps attributed to the Ambien they gave me. Normally, I'm not a big fan of sleep aids but they told me that it's very important for me to sleep. More sleep = better healing. So, I acquiesced.

I received my first chemotherapy infusion last night directly into the chest catheter. It was a little intimidating because Jo the nurse comes in with a small IV bag and she's dressed in a HAZMAT suit -- not really -- but practically. Full sleeved long robe, gloves, full-shield face mask. Evidentally, this stuff can go into your blood stream and get to work but you'd better not get any on your skin! It could burn right through. Some chemotherapeutic agents are administered via glass syringes because they'd burn right through any plastic container. The one I received last night, FLUDARABINE is not quite that caustic. I didn't feel it going in, though on some level it felt like I ought to. It felt like a momentous occassion. I guess it was kinda anti-climactic. I'm told that the actual stem cell infusion is very much the same.

Earlier in the day, I was given NEXIUM by mouth to protect my GI Tract. An hour before receiving the Fludarabine, I was given EMEND by mouth and then I was given an infusion of DECADRON and ZOFRAN. EMEND and ZOFRAN are anti-nausea medications and the DECADRON is a corticosteroid and anti-inflammatory. In addition, I've been taking ACTIGALL every 12 hours to protect my liver. These are given prophylactically and hopefully to stave off some of the potential side effects of the chemo.

At 6:00AM, Jo came in to draw today's bloods. It was "a pleasure" to be able to have my blood drawn without being stuck by a needle. This was the first time they used the new catheter to draw. Much easier and very interesting on an intellectual level -- that this can be used to draw from within to out and vice versa. Amazing.

David, Jacob, and Rachel were here last night and witnessed the whole chemo deal. It's not an easy thing to have to go through and I don't imagine it's a whole lot easier to witness on someone you love.

So far, I'm feeling about the same as I have been for weeks. Still fatigued but at least more optimistic. I do have pain now where they inserted the catheter but I understand that that's normal and that I can have pain medication for it if I so desire.

Happiness is waking up and making myself a cup of coffee right here in my room.

Tuesday IV

Waiting Waiting Waiting....Was supposed to start chemo at around 6:30. Nuttin' yet. UPDATE -- 8:40 -- just started the Pre-chemo treatment ... anti nausea and anti inflammatory. This should run for 1/2 hour - 1 hour and then I get the real deal. Gettin' late and I'm tired so I'll update tomorrow.

Tuesday III

Avram was just here. He had an appointment with the doctor. He picked up his injections. He has to inject twice a day from Thursday thru Sunday. Monday he's due back for the harvesting. They will be taking blood out of one of his arms, separating out the stems cells, and then returning the rest of the blood back in thru the other arm. This will occur over approximately 4 hours. He looks great! Got "Hero" written all over 'im.

Tuesday II

Just got back to my room. Had a Hickman catheter inserted in my right jugular/chest. It has 3 lumens (connections). It went ok. I'm glad I'm back in my room and on my second cup of joe. Illana was here when I got back and, thankfully had in her possession (now MY possession) a dozen Dunkin Donuts. As I sat there chomping on a donut and sipping a cup of coffee, all I kept thinking was..."Life is Good". I don't ask for much, right? A good cup of coffee and Dunkin Donuts....who needs more?? I can't go on without mentioning my new huge "Get Well Soon" balloon and stuffed animals that Illana brought me. Nor can I omit David's visit this morning with my coffeemaker and other assorted goodies. Thank you Susie for the beautiful, comfy jammies and thank you Deena for the coffeemaker and thank you to my sunshine for the smooshy slippers!

Tuesday

I didn't get much sleep but I think it's just because of everything on my mind and not sleeping next to David. I actually went to sleep very early because I couldn't keep my eyes open. By 8 o'clock Mom & I were down for he count...or so we thought. First we were awakened by Rabbi Twersky, who was sent to say hello and introduce himself by Rabbi Klein from the Bikur Cholim. After sending him away, and falling back to sleep, we were awakened again at 8:45 by another Rabbi delivering dinner for Bikum Cholim. The dinner, though beautiful looking, went directly into the refrigerator. Then we fell asleep again, and the night nurse and her assistant stopped by to introduce themselves. It was pretty much a done deal at that point.

I'm not allowed to eat or drink anything yet because I'm waiting for the procedure to insert the central line. I'm hoping it will be early because I could REALLY use a cup of coffee. Once the line is in, they start the chemo. Also, once the line is in, they no longer have to stick me everytime they need to draw blood so, that will be welcome. Meanwhile, it's just beginning to get light and the view is beautiful.

Well, here I am

I am in the hospital. My room is very big, very bright and has a great view of the River and the 59th Street Bridge. They are not going to be able to put in the central line today. They said they will do it tomorrow. In the meantime, if they want to start the chemo before the line goes in, they can do it IV. So far, all I'm feeling is anxious to move on. Nicole from Patient Services really hooked us up. It turned out that she had spoken to the general manager of the Helmsley Medical Tower and they did have a room reserved for us. So, this Shabbat and next Shabbat are taken care of. So far today, I had an EKG, bloods drawn, meds to prevent liver problems and mouth wash to prevent mouth sores. I'm not allowed anything by mouth after midnight because they're planning on putting in the central line in the morning.

Haircut Day

Just came back from a visit to hairdresser extraordinaire Lana. I wanted to go short but it's really not too short. Everyone keeps saying it looks kinda cute so I guess it's not too bad.

Big Happenings

It's Saturday night and I'm scheduled to be admitted to the hosptial on Monday morning at 9AM. I'll be at New York Presbyterian Hospital / Weill-Cornell Medical Center on 68th & York in NYC. This is the way it works. As soon as I'm admitted, I am sedated and a central line is inserted into my chest. Through this central line, all future bloods are given and received. I'm not exactly sure if I start my chemo on the day I'm admitted, but I am under that impression. I'm supposed to receive 6 days of reduced-intensity chemo and then, on Day 7 -- or Day 0 -- I'm scheduled to be infused with the stem cells harvested from my perfect match hero brother, Avram. Yes, I'm nervous and anxious but I'm also optimistic. I believe it will all turn out okay. But I know that the road may be bumpy along the way. I'm ready to give it my all. I'm fortunate in that I have an amazing support system of family and wonderful friends. I'll try to keep you all posted here as often as possible. xoxo L

Health Update

I'm feeling a little low today. I was transfused 2 units of blood 5 weeks ago (on May 13, 2008). It was the first time I needed a transfusion. I was like a new person!! I was able to do things I haven't been able to do in so long. So, after 5 weeks, I think I'm ready for another transfusion.

But, what do I do now?? I've been seeing specialist after specialist for treatments options. I don't want to go on needing blood every 3-4 weeks but if I don't do anything, that's the way it's going to be. I looked into a few clinical trials...

1. Arsenic & ArasC -- Dr. Eric Feldman, Weill-Cornell Medical Center -- after reading the consent form I emailed Dr. Azra Raza at St. Vincent's Comprehensive Cancer Center. She said that it's way too toxic for me and that I shouldn't even consider it. She suggest I get in touch with the Mayo Clinic and try to enroll in one of the JAK2 inhibitor trials they're running there.

2. Avastin -- Dr. Eric Feldman feels that it's not aggressive enough for me.

3. Targen JAK2 inhibitor -- Mayo Clinic -- stated clearly in the consent form is the fact that it's been tested in animals but never in humans.

Tomorrow I have an appointment with Dr. Michael W. Schuster at the Bone Marrow Transplant Unit at Weill-Cornell Medical Center. It's mainly a fact finding mission because, at this point, I find the idea terrifying. Unfortunately, it may be my only option.

More after.