:: Leslie's Updates > May 2003 - March 2004: Being at Home Until First Rebirthday
2/29/04
Well, I am back on insulin. The steroids have shot my sugars up again. However, the big D is gone and the drs are way pleased with everything else. So much so that they don't even want me to come in next week unless there is some kind of emergency. That kinda dumbfounds me - an entire week without a drs visit!! They kept me at 65mg of steroids, but may start the taper when I go in the following week. Moonpie is definately back and I have started gaining some weight. I hope we taper before I turn into a linebacker again. I was really starting to enjoy looking in the mirror and seeing the start of my old self. When you don't look like yourself for over a year, it's weird. I usually avoid the mirror all together. Still have this cold that I can't seem to shake. And speaking of shaking, yep, I am all a twitter again. Even my stomach has been shaking which is really funny looking. Ah, the life of a transplant patient.
2/24/04
Okay, so I am having a coffee and a roll in the hospital cafe, killing time waiting for my short bus to arrive when another couple, about our age, that I've met through the transplant process (He's the patient, His first transplant was the day after mine and his second last Oct) came in for lunch. They joined me. Roger started unpacking his lunch and my mouth dropped open and my jaw hit the floor. He was pulling out SUSHI!!!! I was like, you are going to eat that?? You can eat that?? He said that yeah, they approved him to eat California Rolls if ordered with out cucumber and eel, because it's cooked. He said all he had to do was ask. I couldn't believe it. Many of you know what a sushi freak I am and it's been over a year. So, guess where I made Lawrence take me for dinner last night? You got it, our favorite sushi place. I was in absolute heaven! Roger has also been approved to have small amounts of alcohol. Definately asking about that at my Friday appt. I am sure that two sips of wine will send me rolling.
The actual drs appt was uneventful. Everything remained the same as far as dosing of my meds. The big D is starting to clear up. However, now I am at 65mg of prednisone AND cellcept. The moonpie is starting to return a little bit, but I am still very scrawny. I am only about 8 lbs more than when I first left the hospital after transplant. I am starting to bruise more easily again too. Still am insulin free which is way cool. However, the longer I am on the prednisone, the greater the chance the diabetes will return. They will probably maintain the prednisone levels for a week or so more and then we will try a FIFTH withdrawal attempt. One day...
As promised, here are some ski pictures.
2/17/04
I am insulin free!!! I still have to monitor my sugar levels three times a day, but I don't have to take the automatic morning dose anymore. Thank goodness that the diabetes didn't decide to stick around. The drs left me at 45mg of prednisone today. The big D is still bothering me. Hope it will clear up or they will up the the steroid dose again. Don't want that. But, if it clears up, we will begin the withdrawal process AGAIN. Oh, boy,
Gonna have a party, party! We've decided to hold an open house to celebrate my one year "rebirthday" on March 20th. I will be getting invitations (okay, just postcards) out soon. Nothing fancy. Just snackables and lots of joy. Absolutely everyone will be welcome.
2/14/04
Happy Valentine's Day
What a wild ride the last few weeks have been. As previously mentioned, the drs were tapering me off the prednisone and things were going good. Facial features reappearing, line back look disappearing, weight loss. I was down to 2.5mgs every other day. From 100mg a day for eight months, this was incredible! The cellcept was working fine. They even considered dropping my insulin completely because it looks like my diabetes is going away. The only bad thing was the absolute extreme exhaustion which I knew would EVENTUALLY end.
Well, the exhaustion ended, but NOT the way I wanted it to. The big D reared it's head again. Drs said, back on prednisone! Catch that GVHD fast. So I am at 45mg a day now, which is why I have energy. But, there is no sign of the GVHD on my skin or gut or liver. This is good. So, they will keep me at 45mg for a bit, until things settle down, and then begins the taper again (yes, with all the same symptoms). Yippee for me. I have also been a little anemic lately, so I have been getting a few red blood cell transfusions and Procit shots. One step forward...
Lawrence and I took a mini-vacation today for Valentine's day. We drove up to the north end of Long Island to the Eggs (as in Gatsby). We looked at all the mansions in Great Neck and Manhasset, had a great lunch in Oyster Bay and then went to Teddy Roosevelt's Sagamore Hill. It was a fine day. I have one super Valentine - he even made me a heart shaped waffle for breakfast! Gotta love him!
My father-in-law, Fred decided to take a trip to the East Coast this week. So, I look forward to seeing him on Wednesday. I really think he is just coming for the "Egg and Cheese on a Roll" that all NY delis have. Just teasing.
1/31/04
I have been meaning to update my website for a few days, but as previously mentioned, this predinsone
withdrawal is kicking my butt. I can hardly walk across the room without taking a break, my arms are so weak I can barely lift our pots, and my legs buckle, so you never know when the phrase "whoop-z-daisy will pop out (this is the worst when you are carrying a hot cup of coffee).
So basically I am just sleeping, sleeping, sleeping. I feel like total crap, worse then when I first came out of the hospital. This why it was so hard to reconcile that the drs were practically doing happy dances over my condition. I haven't had a platelet transufusion in 4 weeks and the made their way, on their own, to 41! My liver functions were just as a normal persons and my skin looked good. Only thing they were concerened about was that my hemoglobin was just a little low, so they gave me Procit. So, they have me at 2.5mg of prednisone every other day and only 4 units of NPH insulin. I am hoping that at my next appt, they will away with the insulin all together. My sugars have been running really low - looks like the diabetes is going away too. Remember that I only had steriod induced diatbetes, not a permanet condition like Type II. Oh, and I only have to go to clinic once a week now.
Lawerence has been fantastic taking over the extra burden due to my inability to do much. He's such a catch!
1/23/04
Our trip was fun. Larry got a lot of skiing in and I got a lot of sleep, plus two massages. His sister and her partner joined us for a few days, so Larry had someone to ski with. It was a beautiful lodge and our room was nice - four different walls for me to look at when I wasn't sleeping. I have been sleeping an intense amount - one day it was 19 hours. This transition off the steriods is kicking my butt! My legs are about the weakest, buckling here and there when walking. Gimp city. I am definitly slimming down though - the line backer look is fading and my checks get a little smaller day by day. Yesterday I asked my docs straight out, "am I going to make it?" They said the chances are very good, but they don't give any real assessments until the one year mark - which is coming up. They also guesstimated that I might be able to go back to work this summer.
I will post some vacation pictures soon.
1/11/04/
Wooo Hoooo!! I am tapered down to the maintence dose of prednisone. That's just 5mg a day! I find it incredible that I was at 100mg just a few weeks ago. The CellCept seems to really be doing it's job. No signs of GVHD in the liver, gut and my skin rash is minimal (I actually just think it is dry skin from the cold weather, but those drs...).My liver function tests came back good. Now don't be asking me exactly what this is, because I really don't understand it myself. All I know is when they are low the drs are very happy; when they are high, they whisper to one another. Drs whispering doesn't not equal good things.
I am still extremely tired and have been sleeping a lot. The good news is that I am sleeping deeper. For instance, I actually made until 5am without waking up once last night. I usually wake up 4-5 times. My facial features are still slowly beginning to reappear. The drs said this would take a little while.
We head up for our ski vacation this Friday. No, no, I am not skiing. Lawrence is. I am hitting the spa. We are going to North Conway in the White Mountains in New Hampshire. I had lunch there a couple years back - it's a quaint little town. Conway however is Outlet city - crowded, crowded, but such shopping deals!
Hey, did you check out the daily counter? 300 days baby!
1/7/04
Happy New Year everyone!
My last drs appt went okay. Didn't need a transfusion, platelets at 15. They said
I would be tired during this transistion
off the steriods, but they failed to mention that I would "hit by a mack
truck" tired. I can't seem to get enough sleep, so that's what I have been doing. But I am starting
to see a difference in my face already. Larry said he can actually start to see the apples in checks!
We saw the Producers on Friday night. Nathan Lane and Matthew Brodderick were fabulous! I loved every
moment of it.
Here's a holiday picture straight from Rockefeller Center.
It is really cold here, so I am staying inside. I am on scarf number two so far.
12/31/03
Had my colonoscopy yesterday - woo hooo. They did one to find out just where the GVHD is at. Will get results next week. I had to have a platelet transfunsion prior to the procedure - they wouldn't touch me unless my
count was over 50. So I was all drugged up from that and then they gave me more drugs for the procedure. Lawrence had to guide me along the halls to keep from bouncing off them to get out of the hospital. I was sleeping for the night by 6:30.
My nurse practioner Joanne (btw here's a picture of her and Dawn, the clinic nurse. Joanne is on the right) told me that tapering off of prednisone is going to make me really tired and quite moody. Lawrence should really like that moody part. I should be off steriods completely by mid-January, just in time for our ski week in New Hampshire. No, I won't be skiing, Lawrence will. I will be at the spa and drinking hot cocoa by the fire.
Planning on a quiet New Year's tonight. Fondue, backgammon and maybe a movie. Lawrence and I are such party people! Happy New Year to everyone!
12/25/03
I know I said I wasn't going to post again for a few days, but I had to share my good news. My platelets were at 33 yesterday! 33!! What a Christmas present!
12/23/03
Well, the platelet ride ended yesterday. My count was at 7. So I got a two unit transfusion. This
doesn't mean it won't start up soon again. I went just over two weeks without transfusions. That's cool
on it's own.
On the steroid front: I am completely tapered off the nighttime dose. I started tapering the
morning dose this morning. So I took 55mgs. Every two days I drop 5mgs, so it will be January
before I completely switched from Prednisone to CellCept. I keep singing "All I want for
Christmas is my two cheekbones," but I think it will be January before I see those.
Everything is ready for Christmas in the Kuizema household.. I just keep making more and more cookies.
Must have over 12 dozen by
now, I want to do more frosted sugar cookies.
Our neighbors invited us over for an early lasagna dinner
tomorrow night and then Lawrence I will open our presents. My dad, his wife, and my brother arrive
around noonish on Christmas day. We have the traditional ham dinner planned. It should be a lovely time.
I probably won't be updating for a few days, so I want wish you all the most wonderful holiday. Take
the time to appreciate the person sitting next to you (even if it is Aunt Eunice). All my love goes out
to my family and friends. Merry Christmas!!
12/18/03
Platelets still holding at 14! No transfusion today.
12/17/03
Good news - I didn't have to have a platelet transfusion yesterday. Again! My counts were at 14, but they only transfuse under 10.
This really might mean that I am making my own platelets - slowly. And my WBC and Hemglobin are at super levels. The
Drs seemed really please. Now, if we can get rid of all GVHD!
FYI:
The normal platelet level is 150,000 to 350,000. This would be referred to
as 150-350, so you can see that 14 is still REALLY low.
The normal level of hemoglobin is 12-18. I've been at 12-14.
The normal level of white blood cells is 4-11. Mine have been hovering around 3-5.
Hosted a cookie swap with some neighbors on Monday. Now I have tons of cookies and a great variety. It was cool.
12/12/03
Got some good news at the drs. yesterday. My platelets were at 19. They were at 18 on Monday. That means they went up
one! Well, it is only one, but this is without any transfusions. I may actually be making my own platelets! On the down
side, I still have major gut problems. I get to have a colonoscopy now, but I don't think I am going to enjoy it
as much as Katie Couric.
Random thought of the day:
Anything that comes with a protective seal (i.e. aspirin bottles, sports drinks, cans of peanuts) must have some kind of
tab to remove the seal. There should be a law, a mandate, an order. Please write your congressman.
12/6/03
Sorry I haven't updated. I meant to do it as soon as we got home from Michigan, but I have been busy and barfing.
I will explain. The drs did start me on Cellcept on Monday and are gradually tapering me off the Prednisone. Well, this
has caused some internal discomfort. But, things seem to be settling down a bit. Of course, they gave me another
drug to help with this. MORE DRUGS! MORE DRUGS! The tapering of the prednisone is going to be fantastic. I will loose
my triple chin and my weight will drop. Then, hopefully they will begin to get me off the other drugs that I have
to take because of the prednisone. The GVHD isn't showing up on the skin, just internally, so this is sorta good.
Plus I have no internal infections like c-diff.
I was talking to Joanne (my Registered Nurse Practioner) yesterday. She assures me that the leukemia
is absolutely gone, and we are just fighting the GVHD.
Let's all hope that this works out perfectly! The drs are now predicting that it
will be another 4-6 months before I reach any sense of normality. So much for late Fall, but at least we have a goal
to work towards. We should be totally broke by then with me not working for so long.
And that leads me to why I have been busy. I am trying to get some of my craft projects under consignment at some
speciality shops. I was able to get a small consignment opportunity for my baby booties at a shop in Michigan. I am
not going to get rich doing this, but it gives me something to do and maybe a little extra cash.
We had a nice time in Michigan. We saw a lot of family and friends. And ate a lot! I was able to drop off the majority
of my Christmas presents, so that is a big load off my mind and saved me a lot of postage.
Only a few left to wrap and then I am completely done. I plan
on baking lots of cookies. I am even offering up my baking abilities on a local clasiffed service for a price for those too busy to bake their own. Well, see what happens with that. Going to decorate the house this weekend, so I should fully be in the Christmas spirit soon.
Lawrence and I are having another date night tonight. Can you believe it? We are seeing Carmina Burana at Lincoln Center.
Hopefully, the predicted Nor'easter won't be too bad.
11/23/03
The battle between Cellcept and Prednisone rages on. With a swift left, and a sharp right, Cellcept knocks Prednisone out
of the ring. Cellcept is the Champion!! I am switching starting Dec 1, when we get back from our vacation trip.
I guess it is a combo of tapering down of Prednisone and tapering up of Cellcept. Cellcept is also an immunosuppressant, but
not a steroid. And the fabulous thing is that I will loose all the Prednisone side effects!! Hurrah for that! The reason
for the change, GVHD has hit me again. Some skin, and mostly gut. Gut is not fun. This long car trip we are about to leave
on for Michigan should be interesting.
So off we go, as soon as Lawrence finishes packing the Jeep. Happy Thanksgiving Everyone! Be thankful for all that you
have. I know that I am.
11/19/03
Good Morning. I am up early awaiting my visiting nurse. I am getting my IVIG treatment today. She always says she
is going be here really early, like 6am, to get it started, but never shows up until about 8am. Except once, and I was
sound asleep. So I have to get up just in case. The treatment takes about three hours. How many of you can say
that you have your very own IV pole?
So much for last week's decrease in the prednisone. We went down 5mg to 70mg. But that stupid GVHD is rearing its head.
I have some on my upper arms and back. So, Dr. Schuster upped it again to 75mg to try to catch it in the bud. I am
trying not to be frustrated.
They are going to give me THREE bags of platelets on Friday in preparation to our trip to Michigan for Thanksgiving.
They are thinking this should hold me until I get back to them the following Monday. If I happen to experience any bleeding
while on the road, I am supposed to go to the local emergency room to get a transfusion. Hopefully that won't happen, but
this the longest that I will be away from the drs.
A couple more hundred dollars came for our Light the Night total. Again, way to go! You all are so amazing!
11/11/03
Well, I was voted "most likely to live" by Dr. Schuster's team. I was talking
with my Nurse Practioner, Joanne, yesterday about how I was feeling so crappy
about not being further along in the healing process. She told me that I had past "the danger point" and although we've had some setbacks, I really
am doing well. It's just going to take longer than orginally expected. I have to remember this, as some of the people that I started this process with aren't with us anymore. So, even though I feel crappy, I am still here and she expects me to make a full recovery.
The drs didn't like my Lassie story so much. They sent me for a CT scan to make sure I didn't have a pool of blood on the brain. I am fine.
Been working like crazy to get all my Christmas stuff done. We are taking all the presents with us when we head to Michigan for Thanksgiving. Shipping savings will be huge this year. And then I will be able to RELAX after that and enjoy fun stuff like baking cookies.
Had a mishap on the webpage tonight. While trying to make archive page 9, I accidently deleted the file and Yahoo won't let me have it back. So if you signed recently, don't think that I don't like you by deleting your entry. Just tired.
11/9/03
Way to go team Kuizema!!! I got the "official" total from the Leukemia and Lymphoma Society yesterday.
Our team raised $5,032 for the Light the Night Walk. That is so fantastic! Plus, I still have
some checks straggling in and don't forget the Chicago and Detroit contingents that walked in our name.
So I know the number is much higher, I just have nothing exact. This means so much to me. The support that
everyone gave in this event was stupendous. Thank you, thank you, thank you!
It's freezing here. Okay, it's only in the 40s/50s, but I am freezing. I haven't "done" the last two winters as I spent them hospitalized. I don't know if I am going to be able to handle it. I bought a bunch of yarn - I am going to make scarves up the yazoo.
11/7/03
In the battle of Cellcept vs. Prednisone.... Prednisone wins! Dr. Schuster is keeping things the
same. My liver function tests came back more stabilized, so I guess that was the decision maker.
Platelets still suck, my count was 8 yesterday, so I got a two bag transfusion. My chest x-rays came
back showing just a little bronchitis (which is already starting to clear up), but no signs
of pneumonia, which is a very good thing. They did take away my evening shot of insulin which is cool..
It has been making my blood sugars so low in the morning (around 45) that I feel sooooo goopey. This
morning was a much better morning because of that. I mean I still got my goopey feeling after taking
my trough of pills, but at least I started out on a better stomach.
Had a little fun yesterday. (That was supposed to put you at ease Mom). I have been getting these
dizzy spells lately where I nearly black out. Well, yesterday I did. Woke up on the kitchen floor.
Of course, my dog Abbie was standing over me with her ball trying to get me to play. It wasn't really
a "Timmy's in the well" moment - Lassie she ain't. So any ways, I am fine, but more bruises.
We are going to the opera tonight. I don't really feel like it, but we bought the tickets months ago.
We are seeing the Magic Flute at Lincoln Center. Date night for Les and Lar - that doesn't happen
much!
Thanks for everyone who sent cheers to me. Don't worry. I am not suicidal. I just felt down for a
few days.
11/3/03
Well, I knew I was feeling like crap. I have bronchitis. So instead of a platelet transfusion
today (they held at 25 since Friday), I got to have two chest x-rays. Plus, add two more meds and
an inhaler. An inhaler is a headrush - never had one of these before. It just never ends. Dr. Schuster
is thinking of changing my steroid from Prednisone to Cellcept. I will find out on Thursday when
my liver function tests come back. I'm all for it as I don't think I am responding too well
to Prednisone. I'll try anything else - it is time.
So to chipper myself up, I had a long leisurely lunch at an outdoor cafe - it was 75 today in NYC.
I even had chocolate cake! Then I went and had my hair colored and shaped. If I'd had the time, I
would have went for a massage too. I am sure that Lawrence is glad that I didn't have the time.
11/2/03
Sorry I haven't updated in a long time. I was very tired after organizing the Light the
Night Walk, so I have been sleeping a lot. We also went away to the Berkshires again this year for our
anniversary leaf peeping trip. It was a lovely trip and both Lawrence and I got some much needed
R & R. Also, I seem to have caught a cold, so that has been dragging me down. The other day I took an
eight hour nap, woke up, ate a bit of chicken, and went to bed for the night. Like I said, I've been
sleeping a lot.
I have been in kind of funk lately. It's November and I am pissed. I was supposed to pretty close
to normal by this point, said the drs. Well, I am not. In fact, I think I am slipping. My energy levels
are lower, gvhd is still threatening to come around, and my muscle strength diminishing. I am so sick
of being sick. Tired of shaking, being covered with bruises, taking so much medication, being
dependent on other people for so much, runny eyes, platelet transfusions -- the list is too long. I just
want to be the smart, maybe a little bitchy girl, with great clothes again. I don't want to be
"an inspiration" to anyone. I just want my old life back. And I want my baby. If only I hadn't SEEN
it on the monitor... I am just so sick of being cancer girl. I am tired of people saying "take it
one day at a time." In fact, if I say it again, I might puke. It is someone else's turn. I have
had enough.
Thanks for allowing the rant. Some times are tough.
10/11/03
Here's the pictures from the Light the Night Walk. See how much fun we had!
10/10/03
We had a blast at the Light the Night walk last night. Had a pretty big turn out - 18 walkers!
My Dad even drove down from New Hampshire to participate! It was a beautiful night weatherwise too.
Our team also raised a lot of money. I don't have a final total yet, but it's pretty close to
$5000! I am so geeked about that. I will post some pictures tomorrow.
Had an early doctors appt this morning. Got two bags of platelets. They lowered my prednisone
by 5mgs, so now I am 80mg. They upped my insulin though. Can I say I sooooooooo sick of medicine -
getting RXs filled, organinzing and especially taking it!!
10/4/03
Yesterday was my 200 day anniversary of my transplant. I celebrated by smelling Lawerence's red
wine. It had a nice nose. It is good to have made it this far.
Health update: Not much has changed. Still receiving platelet transfusions about once a week.
Other blood counts are in normal ranges. Predinsone is at 85mg a day. Bruises all over. I have
been having some hip pain. I have an x-ray scheduled for Monday.
The Light the Night Walk is on Thursday. This has been keeping me really busy. Too busy. I
didn't realize how much work it would be to organize a team. But we have raised a ton of money.
We have topped $3000 so far.
9/19/03
Today is my 35th birthday. Na Na Na Na Na! More birthdays to me!
Well, a year and a half ago I didn't think I'd still be here. But look at me now! Walking, talking,
with the largest moon pie face you'd ever seen. I am VERY happy. Lawrence is pretty happy too.
My birthday activities will include craft projects (fun stuff) and dinner out with Lawrence at the
finest Italian Forest Hills has to offer. Then I get to open presents. Ohhhh, how I love presents!
One present everyone can give me today: Please go to the local blood bank and donate blood. It's
easy!
I had a drs appt yesterday. Everything is going smoothly. This slow decrease on the steroids seems
to be working so far. Also, my platelets held at 29 (29!!!!!) since I got transfused on Monday.
This is very good news. They are thinking of bring me down to one office visit a week. I just
might have hospital withdrawal (Ha Ha). The 17th was my six month anniversary of my transplant. Making
it this far is also very good news - each day that passes, the odds of a complete cure gets better.
On Tuesday I had a fun outing. I got tickets to a taping of Wheel of Fortune at Radio City Music Hall.
It was kinda cheesy, but a lot of fun. It was NBA week (I didn't know who any of the players were) and
will air on Nov 17. I went with my friend Melissa and then we went out to lunch at the Sea Grille in
Rockefeller Center where we sat outside. Food was delicious! Here's some pictures.
You will notice
that I have separated myself from my wig. It's really short, but much more comfortable.
9/13/03
Things are good. No platelet transfusions all week! But, I am sure that I will need them on
Monday morning, since my nose is currently bleeding. Not bad, but it's a sign. My RBC is now in a
"normal person's" range at 11.2 and my WBC is pretty decent at 3.2.
So since I had no transfusion yesterday, I had 4 hours to kill before my handicap bus ride came to
pick me up. Got my shoes shined and then I decided to get my hair done. The stylist said she could make
a style of what was there and I must say she did a pretty good job. Color and cut. It's still pretty
short, but I think it is time to go wigless. It will look great in about two more weeks.
Fun fact about life with steroids:
Since your hands are shaking all the time, you can actually put that eye night cream on just like
the beauty counter girl says to. You know, little, tiny dabs. Just hold your finger kinda close, and
the shakes take care of it for you.
Light the Night Walk Update:
If you are planning on actually walking with me on October 9th, you NEED to register. Here are the
directions again:
1. Go to www.lightthenight.org/nyc
2. Click on Join the Cause - Sign Me Up
3. Step 1:
Choose Walk Site Location
Choose by State
Choose New York
Choose Brooklyn Bridge October 9, 2003
4. Step 2:
Enter all contact information including email and phone numbers
5. Step 3:
Select your team name or team captain (see below) and click on "I accept" to the terms & conditions of the event
6. Step 4:
Check information entered. You will then receive a confirmation and your registration is complete
Team Name: Leslie Kuizema’s Team
Team Captain: Leslie Kuizema
9/8/03
Monday. Monday is a very good day for donating blood. National blood banks are in dire need of blood. Think about it.
To learn more about blood donation opportunities, visit http://www.givelife.org or
call 1-800-GIVE-LIFE (1-800-448-3543).
Give Blood- the Gift of Life
9/7/03
Sorry I haven't been updating much lately. I keep meaning to, but then I get busy doing something
or needing a nap. Still have been pushing myself. Not only do I want to get things done, but I
just want to feel like a normal person. I am kinda sick of being a cancer patient all the time. But, then
I exhaust myself and take three hour naps. However, I think being active and collapsing is better than
just sitting on the couch all day. I don't think that I will get any stronger being a lump.
As for my blood counts, they are about the same. White Blood and Hemoglobin/Hematocrit are doing fine
and holding their own. Platelets are still low and I still require transfusions. Bruising continues
everywhere - and these are not small bruises. The docs are tapering
me off the predinsone (steroids) again, but this time VERY slow. They dropped me 5mg about two weeks
ago (so now I am at 95mg) and will do it in 5mg increments so as not to aggravate the GVHD (hopefully).
If this doesn't work this time, they are thinking of switching me to another steroid: MMF. So, I still
have all the steroid side effects going on. My face and neck are getting so big that some of my
necklaces won't fit any more. Moonpie city! In what I know is a futile attempt, but it somehow makes
me feel like I am doing something, I have been buying every skin firming mask and treatment I can get
my hands on - trying to shrink it down. Silly, I know. Also, about two weeks ago, I started getting
this weird sensation in my fingertips and toes. Kinda like pins and needles. I was getting scared,
but it turns out it is a good thing. My nerves are regenerating themselves so that I will have a
better sense of touch. Things have felt pretty numb for awhile. So this is cool. But, now I have
pins and needles and the shakes going on 24/7 in my hands which makes for a wild ride!
Lawrence and I bought a Jeep Liberty over the Labor Day Weekend. It is easier for me to get into. Plus
it is a manual not a stick like our Passat, so when I am able to drive again that will make it easier.
Lawrence is mourning the loss of his Passat, but the Jeep will make those Home Depot runs much easier.
Thank you to all who have already sent in contributions for the Light the Night Walk. As I mentioned
before, I am really looking to raise a lot of money this year since it is the year of my transplant.
The Leukemia and Lymphoma Society donates incredible amounts of money to research and any advances
in leukemia research are a good thing. This disease could actually be curable in ten years as so many
advances have been made. Imagine that! So thanks again for all those who are rallying for me!
8/28/03
LA. Well, now I can say I've been there. We had some nice friends who gave us
some pretty good tours. Santa Monica was freaking freezing, but pretty. Went to some
good restaurants. The Two Hot Tamales chick's Border Grill and Wolfgang Puck's Chinois.
Can't say I was overly impressed with Puck. Our hotel was too shishi for it's own good.
The housekeeping sucked. They didn't clean well and I had to ask for towels every night.
Saw a few Frank Lloyd Wright houses, which made Lawrence happy. And I took a big digger on the
beach concrete pathway in Santa Monica the first 10 minutes of the trip. Lawrence was watching for signs of concussion
all night. We had a rented convertible, so that was fun. And of course, I HAD to spend one of
my free days at the spa. Ahhhh....
Saw the doctor today, who tanked me up with two units of platelets. Those dang things just won't
stabilize. I was really glad they gave me two units on Friday before my trip. If I had hit my head
like I did on the pier with low platelets, we would have spent our first night on vacation in the
emergency room. My other counts are doing great though. They said that I probably won't need
a blood transfusion again, That's cool. No news on changing steroid levels. My face and neck seem
to be getting more moon pie. I can hardly get some of my necklaces on.
No big plans for Labor Day. It's supposed to be rainy. I plan on catching up on a lot of sleep.
8/18/03
On the medical front, still at 100mg of prednisone a day. It has eliminated the GVHD, but I again I have
all the steroid symptoms: easy bruising, moon pie face, shaking, etc. They still haven't decided if
they are going to changed my steroid to MMF/Cellcept or not. Got two bags of platelets today, and
they are going to juice me up on Friday before I head to L.A.
Still looking for support for the Light the Night Walk we are doing on Oct. 9. Would love to
have people walk with us, but a donation will do just fine. They are asking now that you use
this credit
card form if you don't want to send a check to me
made out to the Leukemia/Lymphoma Society. Fill out the form and send it to:
Stacy Greene at (212) 448-9206, ext. 227, or email greenes@nyc.leukemia-lymphoma.org.
475 Park Avenue South
8th Floor
New York, NY 10016
(212) 448-9206
(212) 448-9214 (Fax)
Lawrence and I had a few friends over for a BBQ on Saturday. It was really nice to get together
with people who were not medical personnel. I enjoyed having a "project" to work on.
I even did some of the cooking and baking. I really
miss baking, so I also made bread on Sunday which turned out really good: banana, macademia nut, and
coconut. Yum. I just have to remember to take my wig off when I open the oven door - it will
melt.
Speaking of hair, mine is almost ready to go wig free. Just a little patchy on the top, but the
back is pretty full. Yes, it still short, but whatever. I am also getting my eyelashes back. This
overjoys me. I have been attempting to put mascara on them. Remember, I have shakes REALLY bad. Now,
visualize this process...
Looking forward to our L.A. trip. I hope I don't run into too many problems traveling. My doctor
wrote me a letter explaining my situation (mask, syringes) so hopefully security will leave me alone.
8/8/03
Lots of news today.
The bad first. The GVHD is definately back. It is on my stomach, arms and legs. So up went the steroids
again. But only to 60mg. Dr is going to inch them back up instead of going full throttle up to
100mg again. At first I was really upset about it. But it just so happened that I was reading a
Family Circle article by Rabbi Harold Kushner yesterday morning about gratitude. It really helped put
things in perspective. Hey, at least I am still here. Dealing with GVHD one more time - I can do it.
It's just a minor pain in arse, but I will have a long life afterwards. Now I want to go buy his new
book, "Living a Life that Matters." I have read some of his others, "who needs god?" and "when bad
things happen to good people". I highly recommend him.
But I have lots of good news. My platelet count held again. That means I had NO transfusions at all this
week!! Amazing. I know for sure I will need one next week, because they did drop slightly. The good
news is that they are dropping at a much slower pace, making me less transfusion dependent.
But the best news is that I get to go on a vacation!!! Lawrence has a business meeting at the end of
the month in L.A. and he asked to come with. I thought there is no way that Dr. Schuster is going
to approve me getting on an airplane, but, what the heck, I'll ask. He said ok!!! I just have to wear
a High Particulate mask the whole time. You should see the one that Lawrence wanted me to get. Full
on, anthrax attack, military style. I refused to look like that much of freak, so we compromised
on one that looks like a surgical mask. We are staying in Santa Monica, right by the pier, at the
Viceroy. It looks way too hip for me, but it is the corporate hotel of choice.
Also, Happy Birthday Mom and Happy Anniversary Mom and Tom!
8/5/03
The G.D. GVHD is rearing it's head again. It's only back a little, but if it gets worse and they have
to up my steriods again, I am going to SCREAM! I am soooooooo sick of shaking. But, I did get some good
news at yesterday's dr appt. My platelets held at 23 so I didn't need a transfusion. I kinda
knew they were holding over the weekend because some of my bruises start to fade.
Some people have asked how to just donate to my Light the Night Walk team. You can mail me a check made
out to Leukemia and Lymphoma Society or you can use a credit card on their website
Just be sure to fill out the "Designate your Donation" Section using my team name, Leslie Kuizema's
Team, and under event put Light the Night for the New York City chapter.
7/28/03
My Light the Night Team is ready for action. Anyone is welcome to walk with Lawrence and I.
It is very originally
named "Leslie Kuizema's Team." Everyone who wants to walk can register online at
www.lightthenight.org/nyc in 4 easy steps. If you just want to donate under the team name, you can do
that online too or call (212) 448-9206, ext. 227.
Manhattan Light The Night Walk
Location:
Brooklyn Bridge
Date: October 9, 2003 - Thursday
Beginning Time: 5:00 pm Eastern
End Time: 9:00 pm
Suggested Donation: N/A
We took my sister on a big adventure this weekend. We headed off to Coney
Island to beat the heat.
We had a ball - but all three of us were exhausted after just three hours!
Had a good drs appt. No transfusions and they dropped the steroid level to 50mg. Maybe my shakes will start disappearing soon...
7/22/03
I have been wearing the dickens out of myself lately. The BMT cruise was awesome. It was a beautiful
day and the food was pretty good. It was kinda hard walking on the boat. Heck, I still have trouble
walking on flat surfaces!
However, by the third hour I was ready for a nap. And yesterday after
my drs appt, I went by my workplace for the first time. It was great seeing everyone,
but I didn't get
a nap, so I was in bed early. So, today, I have been lazy, lazy, lazy - napping away.
I did get some good news at the drs. My platelets held over the weekend at 23. This means I
didn't have to have a transfusion. Hopefully, this is a start of a trend. Also, he decreased
my steroids just a bit. I am now on 80mg of prednisone instead of 100. It's a beginning.
My sister arrives tomorrow for a nine day visit! I can't wait to see her. We plan on doing
lots of crafts.
7/19/03
My Dad has been visiting all week. His wife has been staying in Manhattan for the Romance Writers
of America convention. Her pen name is Tina St. John, you
should check her out. Anyways, it's been quite comical with all three of us lined up like monkeys on
our laptops. Lawrence and him are hopefully going to finish the garage project today!
Have another big event planned for tomorrow. I am becoming a social butterfly! The Bone Marrow Unit
New York/Cornell hosts a BMT alumni cruise each year. A fancy lunch while cruising around Manhattan
Harbor. It's pretty nice that they do this.
Now I have a little Public Service Announcement. It's getting to be that time to sign up for the "Light the Night Walk" sponsored by the Leukemia and Lymphoma Society. They are held all over the
country. Last year Lawrence and I raised $1000. It's a great cause because it helps people like
ME!! Please consider walking or donating. Of course, you can still donate blood too.
Here are few new pictures. One is one I found from transplant day with my mom
that I really liked and the other is from my big party day last weekend.
7/15/03
Seems like I have been terribly busy lately. I have had so much paperwork to do for the insurance
company and disability company. I think I finally have it under control, but 2 hours on hold
with Social Security is a killer.
No improvement on the platelet situation. I still have to have at least one unit every time
I visit the clinic. At least I still have my catheter, so I don't have to get an IV every time.
The bummer thing is that the catheter shows with my summer clothes, but I guess a lumpy chest
ain't too big of a thing.
Fun fact: I take 18 pills, a magnesium drink, and insulin every morning before breakfast.
I went to a wedding reception on Saturday night which was the biggest thrill for me! It was
my first social event. Since I am still not allowed to go to restaurants it was fantastic to be
served, have (virgin) cocktails, talk to friends, get dressed up. I can't wait to get to do normal
things again someday.
7/8/03
I am doing okay. Platelet counts didn't hold, so I got a transfusion yesterday. They
gave me a hormone to boost my red blood count which will hopefully give me more energy and make me less
anemic. They still have me the high dose of steroids. I really hope they reduce these soon. I am so
tired of shaking. I shake everywhere - hands, legs, voice - 24/7. It is exhausting me.
I had a big day yesterday. I went into Manhattan all by myself. I took the paratransit service - yup,
I am officially a "short bus" rider. It went pretty well. Lawrence met me a the hospital entrance.
Still working on those photo albums. I have finished four so far. Working on a window cornice too.
That might get done tonight. Lawerence has to help me - not allowed to use the electric staple
gun myself. Trying to get some things reframed too. Keeping busy between my naps.
6/30/03
Had a pretty good visit at the drs today. My WBC hit 6.5 and get this, my platelet count hit
an all time high since the BMT at 41!!! It has ususally been hovering around 10 or below.
This is cool news. Maybe they will hold there. The increase
in the steroids seems to be having a positive effect on the gut GVHD and big D. However, it
has left me real unstable. When I stand up, I have to take a few minutes or I will fall over. But it
hasn't affected my sleep - whew!
I have been aching to garden. I can't though because of the bacteria in the dirt. There is so much
that needs to be done out there. With all the rain we had, and now the burst of summer, it's a
jungle out there!
6/27/03
Most of this week I have felt like crap. Major stomach cramps and the big D. I was at the drs today.
They are increasing my steroid levels again. Bummer. But this should take care of this flare up of
what they think is GVHD of the gut. I just keep chanting, one day at a time, one day at a time.
My mom leaves tomorrow. She has been here two weeks and I am going to miss her. I am going to try it alone
next week. Lawrence will take me to my drs appt, but I will be at home alone the other days. Of course
it's a short week because of the holiday, so we thought it would be a good time to try it. I did get
approved for those little hospital buses, so now I only have to pay $2 instead of the $25/each way
town car fare.
6/21/03
Well, the great platelet experiment was a bust. They didn't hold their own. Yesterday was a long
day of transfusions - 2 bags of platelets and 2 bags of red blood cells - about 5 hours. At least
it gave my mom enough time to hit Bloomingdales and shop the Upper East Side. I really think she secretly
wants to be a New Yorker.
I am starting to get hair!!! Yippee. I have about as much as a newborn now - soft peach fuzz. I can't
wait to get eyelashes though. I look like a freak without them. I want my long lashes back! (Kathy I have indeed been using the coconut cream. Larry calls me coconut head every night. Kathy gave me a cream that is supposed to promote hair growth.)
6/17/03
Well, wouldn't you know it. They didn't give me platelets yesterday at my visit. They were at 13 (which is still very low and wouldn't wish it on any of any of you). However, they had been dropping to 7 or 8 between transfusions. So the thinking is that they might be starting to hold their own. So unless I start massive nose bleeds, I won't get more platelets until Friday. This might be the beginning of becoming less transfusion dependent, which is good.
6/14/03
Some people keep asking for more frequent updates. I am afraid you might have to curb your cravings. There just isn't that much different going on from day to day. But that's a good thing, right? I go to clinic twice a week and get my usual two bags of platelets and sometimes packed red blood cells. I take my meds every day. I exercise every morning. Watch a lot of TV and read magazines and catalogs. Nap. Nap some more. And then Lawrence pushes me up the stairs somewhere around 11. It's going to be a long, slow processs of recovery and I hope it is pretty uneventful from now on. I've think I have enough great tales at this point. So if something really important happens, I'll update. But I don't think you want to know daily if I chose Dr. Phil over Oprah. But, I don't want to sound too ungrateful for you all checking in. Your support has meant the world to me.
6/12/03
Okay, me, flip-flop shoes, very, very funny.
6/9/03
Dr Schuster decided to drop all my evening steroids, which is very goooooooooood. Maybe now I will be able to sleep the whole night through. I think Larry is ready to punch me. Every night I wake about 2am, thrashing and then I can't get back to sleep. Maybe I won't be so groggy during the day too because of this. Got another two units of platelets. Dang, I crunch through those.
6/7/03
Got some more good news on the GVHD front yesterday at the drs. Three days had passed since they reduced my prednisone by 20mg and the GVHD didn't get worse, it got just a wee bit better. So he decreased it by another 20mg. Now I am only taking 80mg, which is still A LOT, but I am really happy that the decreasing continues. As mentioned before, most of the side effects come from the prednisone.
I also got the hugest hemotoma on my stomach. Where I gave myself an insulin shot yesterday swelled up into the hugest bruise. This was before I got my usual two bags of platelets and my count was only 9. It looks really gross.
6/5/03
Can I just say that all this health care is exhausting! Keeping track of pills, glucose testing, doctors visits -- it never ends. It was so much easier when the nurses just handed you the stuff you needed in the hospital. It's a full time job!! But it is better to be home.
6/4/03
Had a big day yesterday. Spent a very long day at the drs. Had six hours of transfusions - two bags of
platelets and two bags of packed red blood cells. I sent my mother-in-law out to
explore Manhattan a bit so she wouldn't have to sit through it all.
Got some good news though. Dr. Schuster finally dropped the evening dose of my predinsone (steroid).
Okay, he only dropped it by 20mg, but it's a start!! All good things come from decreasing the
steroid levels.
Got some bad news too though. I have developed diabetes. Steroid induced of course!! It's only temporary
and will go away when, yes, you guessed it, I get off all the steroids. However, now I have to give
myself insulin shots (which aren't to bad) and use this monitoring thing which confuses the heck out
of me!
5/31/03
Something interesting (maybe). When I went through induction chemo the first time in 2002 I found that I no longer needed my glasses. Stuck in some drawer and forgot about them. Now after the BMT, I need my glasses again. The idea struck me, had my Dad search them out, and voila! I can see. It's fabulous!
5/30/03
Had a another good check up yesterday. The GVHD is starting to fade a bit. As Dr. Schuster says, "peeling
is healing" and I've got lots of scaling going on. I try to work my legs a bit every day, but they
are still very weak. Have to get shoved up the stairs every night for bed. A lot of this is from
the steroids. I guess I don't get the pump you up Arnold ones. Mine make me weak. Until the GVHD
clears up, they won't decrease them. So I have all these weird things going on from them. Bruising, dry
eyes, and what I affectionately call the palsy (I shake really bad). They are also making it really
difficult to sleep. Even though I take two drugs to counteract this, I am afraid Lawrence is going
to kick me out of bed soon.
I wish it stop raining. I did get to sit outside on the patio for a bit today. It was nice. I am not supposed
to get any sun as that will aggravate the GVHD, but we have a patio umbrella and I slathered on the
sunscreen. We spent the majority of last weekend searching the classifieds for a comfy chair for me
to curl up in. We found one and Lawrence made this wild contraption in our car to get it home -- and
dry! So, basically that is it right now: doctors visits and enjoying be home resting.
5/27/03
Check up went okay. Still monitoring the GVHD, but I got to go home. Got two bags of platelets.
5/23/03
Still have the GVHD on the skin. They took another skin biopsy yesterday so I
will get the results back next week just to confirm that it is not an allergic
reaction to one of my many, many drugs. I don't know what they will do if it is confirmed GVHD. I am already on so many steriods. One day at a time, one day at a time
Trying to work on the legs a bit. I have had so many doctor appts this week, that I am exhausted by the time I get home, so I basically lay around at that point. Having my own laptop rocks. However, I spend a lot of time shopping (or really window shopping). Got lots of time to kill, but not much money since I am on disability, so I'd better knock it off. I did break out the mother of all projects --- photo albums! I have years worth of pictures to file.
5/19/03
Another milestone passed. After my outpatient visit today, they let me go HOME!!! I still have the GVHD, but we are still monitoring it. I had to get two bags of platelets while I was there. My count was at five ....low, low, low. I have also been able to WALK up the stairs - okay, only once a day, but one small step at a time (pardon the pun).
5/17/03
Well, let's try this again. I am home now. Lawrence has me all set up in the living room
for the day, and I head upstairs to sleep.
He even bought me a laptop so that I can remain connected. He really doesn't
want me in the basement where the office is because of the dust and possible mold. Taking
good care of me as usual. My stepmom Kate got her first taste of hospital hanging this
trip. She usually lucks out and I am at home when she visits. She thought tooling
around Manhattan was pretty fun.
I did use some of time in the hospital this past week to start strength training - very slow
strength training. However, progress has been made. I can now make it up about two steps
and the greatest thing - I can get off the toilet. God bless thigh muscles!!
5/16/03
They are sending me home now. It is definately GVHD on my skin, but they don't think it is severe enough to keep me now. I guess this kinda thing can go on for a long time. They can't find any other infections. So, who knows, maybe just home for the weekend, maybe for longer. I go to the clinic for evaluation on Monday morning.
5/15/03
Well, still here in the hospital. One moment they say I am going home tomorrow, and then they change their minds. It is almost certain that the GVHD isn't in the gut. However some rash is starting to reappear on my arms and neck. It so frustrating. However, I feel much more rested then when they readmitted me Monday. I was practically collapsing from lack of energy. So to pass the time...wondering if anyone had a copy of "Down With Love" that I might be able to "REVIEW." I miss current movies. Okay, this is a not so subtle hint for my work friends ;)
5/12/03
Leslie went to the hospital for her first checkup visit today. They said they missed her smiling face so much, they wouldn't let her leave. Since she had a river view for the last nine weeks, they wanted to give her an upper east side apartment with a city view. Actually, she has a few complications, the worst of which may be a return of GVHD (when the transplanted blood attacks the body), so they admitted her again. We don't know how serious this may be, or how long she must stay. It's tough to keep thinking chin-up when she keeps getting punched in the face, but we know that attitude is a big part of winning the battle, so back we go for another round.
5/10/03
I am at home!! I got discharged at 8:30 pm Friday night. They pumped me up with a bunch of blood
products before I could leave - guess they wanted to make sure I made it through the weekend.
You should see the amount of medicine I was sent home with!!
So walking in the door last night was so cool. They had to hold back the dog, as I am not supposed to
have any contact with her. How wonderful to be home and sleep in my own bed for the first time
in nine weeks.
Right away I realized my limitions. I cannot use steps. No muscles to make that motion. I had
to go up on me bum ... scoot, scoot, scoot. Also, kinda of embarassing, but I cannot get off the
toilet as it sits so much lower than the hospital one and again, no muscles. So, I will still need
constant caregiving for awhile and will work on developing some motor skills a little bit day
by day.
My regular visitaton schedule will be on Mondays and Thursdays. On those days I will meet with
Dr. Schuster at his clinic. They will monitor my blood and drug levels. If it turns out I need
blood, they will just give it to me outpatient. There is always the chance that I might have
to be hospitalized from time to time if I get an infection, but we won't EVEN think about that now.
But basically I am good to be at home, resting and recouperating.
5/8/03
Woke up singing Ozzy's "Mama, I'm comin' home"