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