:: Leslie's Updates > July 2004 - July 2005
7/14/05
Leslie's cataract surgery went very well. Her eye was photosensitive after removing the patch, so for the first day, she wore the happening big blue-blockers.
She nearly collapsed on the way in to the followup appointment on Tuesday, though, so she was admitted with a fever and very painful nausea. That night she was sent to ICU because her blood pressure dropped and she was septic. After a very rough and scary night, she bounced back, and is now feeling much better. It seems she had a recurrence of GVHD that wore through the lining somewhere in her gut, letting bacteria into her bloodstream. The bacterial toxins overwhelmed the immune system, causing the walls of her blood vessels to expand, leading to the drop in pressure. To bring the pressure up, the doctors just pumped her full of saline. It's so simple, it's almost funny: just put in more fluid to fill up the space. She is supposed to be released from the ICU today, but no word yet when she will be able to go home; hopefully before the weekend.
6/28/05
Had an appt with the eye doctor yesterday. Everything is a-ok. Left eye is healing just perfectly and the right eye is a go-ahead for surgery on the 11th. My skin is getting so thin. Abbie gave me a huge skin tear today and both my knees came in contact with the coffee table, leaving huge black bruises.
If anyone has been trying to call, our phone is dead. We are waiting on the phone company to come and fix it. Waiting...waiting...waiting. It should be tomorrow.
6/21/05
My drs appt went swimmingly yesterday. All blood counts are good; sugars are good; skin is good with just a touch of swelling in the left leg; responding well to the last drop in Prednisone. He decided to take me off Prograf completely - hopefully forever. Prograf is another immunosuppressant drug. Yeah! The fewer drugs, the better. Been having periods of emotional moodiness and extreme fatigue (poor Lawrence) since the last Prednisone drop, but this was expected. Getting skin tears and bruises all over - I look like a mess. I am embarrassed to wear sleeveless things no matter how hot it is. Still on the photophoresis waiting list.
We were planning on going to see the Met tonight as they always do free concerts in the park come summer. However, this huge storm just rolled in. I don't think there is going to be a concert. It kinda bums me out - it's one of our summertime traditions. I even went last year in my wheelchair!
Lawrence's birthday is Friday and he was planning to take the day off. This might be all screwed up though because he still doesn't know if he is Chicago bound tonight or not. He was hoping to spend the day at the lumber yard (yes, that is Tim Allen's grunting that you are hearing). He is halfway through our backyard redo. He did the one side already with a a beautiful stone and hosta gardan. Put in an herb garden. Got new patio chairs. Took down a tree that was really a big weed; "A Tree Grows in Brooklyn" kinda tree that was starting to cause some damage. You should have seen the men in the neighborhood gather around this tree felling event - it was like watching a bunch of boys going "break it, heh, break it." I was nervous the whole time and poised to call 911. So the lumber is for a new fence and deck. My dad is coming down on the 4th weekend to help put it up. I think the finshed product is going to look real nice. I can't wait to give Lawrence his birthday present. I did a lot of research on it, so I hope he likes it. He'll probably return it. I am making him a fresh peach pie as he really isn't a cake person.
My eye is healing up nicely. The bruising finally went away, so now I don't look like a spousal abuse victim. No one really looked like they believed me when I said it was surgery. I can't wait to get the other one done.
6/11/05
It must have been the little gnomes running around my bedroom in the middle of the night last week that did it. I got another positive drs consultation on Friday with my transplant drs. Three positive visits from different drs in a row -oh my!! Everything looks a-okay. The only change is they lowered my prednisone by 5mg, which is a good thing. I also learned that I am very near the top of the photophoresis list. CAN'T wait to start on that. I mean that seriously, not sarcastically. So, I am going to enjoy the weekend bathing in all this glorious news. I'll let you know what arm fell off on Monday ;)
6/8/05
Something's up... More good dr news. Had my one year hip replacement checkup today. Can you believe it's been a year already!! Everything with the left hip looks exactly as it should. The screws are still in the right place and my flexibility is great. The xray also showed that there is no damage, at this time, to the right hip - whew! The dr even said I had a little sway in my step... flirt
My eyesight is improving a little. My eye gets really tired and I want to close it all the time. Still can't believe how colorful the world is!
I'm just waiting for the bomb to drop when I meet with my regular dr on Friday. However, they say good things come in threes.
6/7/05
Sit down. Hold on to your britches. I am about to use a word rarely associated with my medical condition. SUCCESS!!!! The cataract surgery went off like a text book case. The whole procedure took less than an hour. They sent me home groggy and with a sheild/patch over my eye. Had to go back this morning for a post op checkup and when she took off the sheild it was like a miacle. I had thought things would be fuzzy still, but no, there was Larry crisp and in color! It's amazing. Things will continue to sharpen up even more as time goes by with most the dramatic changes taking place this week. It went so well that the dr put right on the surgery schedule to do my right eye on July 11th! Cool beans. It is a little weird walking around with a good eye and a blind eye - throws me off balance. However, my new eye is getting tired, so I think I am going to rest it. I just wanted to share the good news right away.
6/1/05
Quote from eye dr during exam:
"Boy, I can hardly see in. I KNOW you can't see OUT!"
Looks like it's a go for Monday's surgery.
5/30/05
MAY 2005
Sudden high fever sends me to New Hampshire Emergency Room to begin a four day visit.
One week of rest and recuperation.
Off to Spain for a FABULOUS vacation dampened only by the beginings of body collapse..
Return to States for full body collapse and a week and a half stay at NYPH. Tests, tests and more test - no conclusions.
Persuaded Drs to release me to head to Indiana for Grandma’s funeral.
Returned for one week of rest before eye surgery on 6/6.
Happy Memorial day!
5/21/05
Spain was great. We had a view of the Mediterranean with mostly nice weather. We drove around Andalusia quite a lot: the Alhambra at Granada, the pueblo blanca home of bullfighting Ronda, and even Tangier, Morocco. A flamenco performance in Marbella was like a dream. And we witnessed the fascinating, horrific spectacle of a bullfight. Unfortunately, the trip was too much for Leslie's stamina level. She nearly collapsed during a couple excursions, and needed a wheelchair to get around the airports during the return.
Earlier this week, going in for her regular doctor visit, Leslie couldn't walk five paces without stopping to rest, so they admitted her to the hospital right away. Initially they suspected a cardiac embolism (which would be very bad), and there is some concern over her kidney functions. After a battery of tests and scans, we still don't know much, though we are grateful to be in the US where her top-notch treatment is readily available. Vistors to the hospital are welcome. You can get in touch on Leslie's mobile or leave a message at home.
5/3/05
Had a positive drs appt yesterday. My counts are looking good. As far as my stomach discomfort, we doubled my Protonix dose. Hopefully this fix it all. Can't wait for my eye surgery - being nearly blind sucks. I hope that I can actually see Spain! I got final travel approval yesterday from the drs. I would have been so disappointed if I couldn't go. I am really looking forward to this trip.
4/20/05
Well, as things usually go in our household our long, relaxing four day weekend didn't go quite as planned. We headed up to New Hampshire Saturday am to visit with my Dad and his wife. Headed straight to Petey's clam restaurant for fried clams. Lawrence loves them. However, by evening I started not feeling so well. Overnight I developed a high fever and a huge attack of the big D. As a good little patient, I called into my drs here in NYC. They told me to head to the nearest emergency room. So, I ended up spending my weekend at the Portsmouth Regional Hospital. It was a nice facility, but the last place I wanted to be. They were just supposed to stabilize me enough to get me back to my NY drs, but some of the drs there had their own ideas. I had to temper them down a bit. The good thing though is nothing seems to be seriously wrong. I did force Lawrence to go skiing one day, but he said he felt guilty about it. I was the one who felt way guilty for messing up our getaway. My dang body.
While we were up there Abbie had eye surgery and her teeth cleaned. So both of Lawrence's girls were hanging in the hospital. And we made quite sight, I'm sure, to all the other drivers who saw a woman in a mask and a dog in plastic cone. They were probably thinking "stay away from that car, something freaky is happening."
Good new. The results of my HIDA scan came back. No gaulbladder problems. However, this leaves us stumped on what is causing my stomach pain. Something to figure out.
My first cataract surgery on the left eye is scheduled for 6/6. Here's a little guide to what I am going through. I have subcapsular cataracts. Go figure, steroid induced.
4/13/05
At my Monday appt Dr S said I showed positive Murphy signs. When I told Lawrence this, his answer was "What? What ever can go wrong with your body, will." No kidding!!
Well, positive Murphy signs show that there is something wrong with my gallbladder. It's either inflammation or gall stones. I underwent a two hour scan yesterday to find out for certain. They gave me Morphine with the scan, so I was quite out of it afterwards. The results should be back in a few days.
I saw the optometrist before and after the scan. The first session was to figure out what was going on. Yes, I have cataracts in both eyes and will have to have my lenses replaced. The left eye is scheduled to be done 6/6. In this session I was given drops to dialate my eyes. The second session after the scan was to take measurements for surgery. I had numbing drops and then ultrasound gel smeared all over my eye area. So at this time I am COMPLETELY blind and drugged up. What a sight!!
So, more challenges to face. I just wish I could get off these dang steroids! I hope my turn for photopheris comes up soon.
4/5/05
Being semi-blind makes it hard to update my site, so forgive the delay.
Got the results of the finger MRI on Friday. No infection, just inflammation of the tendons which supposably will resolve itself at some point. Yeah. Lowered steroids to 25 mg/day - this is good. Been extremely tired again. I think I was awake for about 12 hours for the entire weekend. I have an eye doctors appt next Tuesday to figure out the vision thing. Overall, things are steady right now. Just watching the jelly beans and the slight swelling of my legs while we taper the steroids.
3/25/05
The Good, The Bad, and The Ugly (in reverse order)
The Ugly
Estimated new cases and deaths from acute myeloid leukemia (AML) in the United States in 2005:
New cases: 11,960.
Deaths: 9,000.
American Cancer Society.: Cancer Facts and Figures 2005. Atlanta, Ga: American Cancer Society, 2005
The Bad
Oh, cursed finger, who used to be my aide, why doust thee give me such trouble so? Translation: THE FINGER is swelling up again. I have to have a MRI taken of it this afternoon. I've had this before and it's quite comical: This huge machine and here I am sticking my hand in a holding contraption into it. They stopped all my IV antibiotics last Friday and pulled my PICC line yesterday, so I don't know what we'll do if we find anything. I am also supposed to meet with the hand surgeon again. Please, please, no surgery!
Still have the nasty cold going on - just can't shake it. The coughing fits are something fierce, but according to xrays and the drs, nothing has settled in the bottom.
The semi-blindness continues. I can hardly read - which is a big reason I haven't updated or replied to many emails - I can't really see the screen. Lawrence has to read things to me off the TV (forget subtitled movies!) and magazines/newspapers are no fun. I have my Sherlock Holmes magnify glass at the ready. I mostly use it for reading cooking times. I ran into one of my transplant buddies yesterday - her husband is the patient. He is experiencing the exact same thing right now and got an eye check up. He has cataracts. This is probably what I have too, but I have to make the appt to be certain and schedule the surgery. R and I tend to have the same reaction to this whole thing, except he's up a knee on me (and no, I don't want to eompete and loose my knee)
New lumps have appeared on my legs. they are like little jelly beans under the skin. It's a watch and wait.
The Good
My steriods were lowered to 30 mg/day yesterday. This is cool. Facial features are reappearing - I do so love having cheekbones.
I am on the waiting list to try a new procedute for chronic Graft Versus Host Disease. It is called photopherisis (there is only one machine right now, that why there is a waiting list). The process involves hooking me up to the machine, taking out my blood, treating it with medication and high dose UVA light and returning it to me. Not a painful procedure, but it is time consuming. Each treatment takes about 3-4 hours and you have it done 3-5 times a week for at least six months. However, it looks promising and surely I have the time. The only risk involved is if it doesn't work, you're right back where you started. I am exited to try something different.
Lawrence took me out to one of my favorite restaurants (L'Absinthe) to celebrate my second rebirthday. I wanted to keep it very low key. We had a lovely time.
3/17/05
Yeah, two years. Maybe three's a charm.
3/10/05
Yep, the finger's still infected, but getting better. I am still doing four IV treatments a day at home. The visiting nurse comes once a week to change the dressing on my PICC line in arm. And then I sleep. My prednisone levels (steroids) were lowered yesterday (yeah) to 40mg/day but my prograf went up by another .5 mg/day. I still have vaseline eyes (like someone smeared the stuff over my eyes) so seeing is tough. Reading is out of the question without my magnify glass. I have been eating a lot of ice cream lately - which fantastic for my diabetes - but I hve been a little down about approaching my second "rebirthday" and still being in such crappy shape.
3/6/05
Still sleeping about 16 hours a day. Still taking all the extra meds. Still not healed. Another appointment on Tuesday. Don't know if it will make any difference.
2/24/05
I got home late Saturday, but my days since then have been filled with drs, visiting nurses, medications, and SLEEP. This "little" finger infection is turning into quite a royal pain. I have four IV antibiotic infusions daily which is annoying, Lawrence, of course, has been an angel helping me out with all this.
Lawrence's dad and his wife came out for a few days when I was home, It was wonderful to see them - wish we had more time together,
2/20/05
Home!!!
2/17/05
Been holed up in a cozy little hospital suite since last Thursday. I finally got internet access. The finger is still infected. They tried a drainage procedure, which didn't do much. I had a MRI on my hand which showed no abcesses. So cuuently I am on two IV antibiotics and my hand is in traction. I am getting pretty good at being a one haned lefty. Unless, that is, if I need to write. My Valentine to Larry was a masterpiece! Bummer thing is I can't crochet to pass the time. I am going to start pushing for release and home health care.
2/10/05
Off to the hospital. Finger infection is really bad.
2/9/05
Been down for the count. That finger infection that was healing up so nicely decided to explode again on Sunday, Talk about painful. It feels like my finger is in a vice grip. My index finger is the size of three of my other fingers. The drs put me on antibiotics, but they don't seem to be making a dent, I am hoping there's not a hospital stay in my future. Because of the infection, he left all my meds at the same level - doesn't to mess with things.
Our ski trip was okay. It was really great to see my sister-in-law and her partner. And Lawrence surely enjoyed skiing, however the conditions weren't prime. Also, Abbie (our dog) made a new boyfriend named Dylan, However, I was really disappointed with our accommodations. We were supposed to be staying at this premiere b and b, but it was meager. Also, restaurants that we've eaten at before dropped in quality. Plus I was feeling pretty crappy most of the time. I guess, the most important thing though is that Lawrence got to ski. I should just be happy that he got a break- he deserves it.
2/4/05
Sorry about the lack of updates. I've been so busy. So busy SLEEPING that is! Last weekend I developed a horrible infection in my index finger, accompanied by fevers, which I apparently got when I burned myself on my tea kettle. It was pretty massive and red - had us a wee bit concerned ya know? Infections, me, not good things. Well, just as that was healing up and I was catching a break, I took a deep dive into the dark canyons of drug withdrawal. Lets just say I have slept most of the last 2/3s of the last 3 days. Solid. What's that Morton salt ad? When it rains, it pours. First I couldn't sleep at all, and now I can't wake up. Go figure. It will probably get "darker" next Monday when I have my drs appt. We are scheduled to drop the prednisone again and there seems to be nothing weird going on in my body that will prevent this. Also, my sugar levels have been going nuts, which is add to overall state of yuckiness. I don't quite think we have the insulin dosage right. So that is my medical update.
We are heading out for our ski weekend today. I am at least heading to a new room to sleep. Hey, at least it has a fireplace! The dog is coming with us!
This may sound cynical, but I guess I watch a lot of news shows. I feel for all the tsunami victims. It was absolutely horrible; an unthinkable tragedy. And yes, I made my donation. However, isn't it time we consider giving some relief money to Africa?
1/22/05
Had a fantastic drs appt yesterday. The drs were more than happy. The big D is GONE! Seems like increasing the prograf was the trick; So the prednisone was lowered to 50. I also gained 2 pounds! Blood counts were okay. I still have to continue the Neupogen shots. Still not sleeping much at all and am very exhausted, the lowered prednisone levels should help out with this. Skin looks great and the swelling in my legs is currently minimal, but the skin is still very tight and sore, okay, PAINFUL! But I left feeling really good about this appt. I was starting to get to the give up point again. Hey, even approved our trip to Spain.
Waiting for the blizzard to begin. We are supposed to get two feet of snow and it is soooooo cold here. I think this might finally be a good weekend for that Godfather trilogy.
1/18/05
Well, we may have made a breakthrough. I am even nervous to talk about it in case I jinx it. However, the big D seems to have ceased as of Sunday. This new drug combo might have worked! I have also been able to get some sleep at last. I have been sleeping quite a lot the last few days and it feels fantastic. I have a lot of catching up to do. Yesterday I fell asleep about 7pm, woke up around 12, went up to bed and slept all the way until 5:30 this morning! Sleep is a good thing. The Neupogen shots are still continuing to make me feel very achy, like the flu is coming on. I hope that I will see some results in my WBC from these when I go to the drs on Friday.The swelling in legs continues, but if Lawrence rubs them out, they feel much better.
My heart goes out to my dad and his wife today. They just found out yesterday that their kitty Martha has to be put down today. It's just so sad. Big hug to them and to Martha's brother Max.
Been planning our vacations for the next six months. Have just about finalized our Feb ski trip and for the big ticket trip, we are going to Marbella Spain in May! I have never really thought about Spain as a vacation destination, but now I am so totally geeked to take this trip. It seems like such a mystical place: Moorish castles, beaches, day trips to Tangiers and Gibraltar - wow.
1/14/05
This week brought no raise in my predinose level. Dr S really wants to avoid this and get me off this stuff. So we are fooling around with my Prograf (tacrolimus) levels. I am now taking 1.5mg in the morning and 1mg at night. This is about as high as we can go, it seems, because my liver functions are slightly raised. Raised liver functions can cause kidney damage. Don't want this. My blood counts are lowered (due to the continued GVHD of the gut). Platelets dropped again to 65 and my WBC is only at 1.5. The Neupogen shots aren't having the quick impact as they were, so now I have to give them to myself three times a week instead of two. Got the shots delivered yesterday. I now have $16,000 worth of medicine in my fridge - more that I make yearly through my disability!! Anyone know where the Neupogen black market is?? Oh heck, I should just stand on the corner and sell my extra percoset if I am going to go that route!! The Neupogen shots make me very achy, like the flu is coming on. I haven't been sleeping well lately either. I am absolutely exhausted, but I can't fall asleep. Even my sleep meds aren't working. Big bags are starting to develop under my eyes. One positive thing: I gained 1.5 lbs!! Fantastic.
The Kuizema clean up continues. We can actually move in our basement now. Organizing, organizing, organizing - it feels pretty good though. The things we are unearthing are amazing. Things we thought we got rid of a long time ago. It's amazing how people accumulate stuff!
Have our ski weekend planned for the first week in Feb. We are not going to drive as far north as normal, so hopefully there will be plenty of snow. It's been a weird winter. I, of course, will be getting spa treatments and sitting by the fireplace. Rough life.
1/6/05
The prednisone levels are going to stay the same for another week even though I still have the Big D (which btw is diarrhea. I guess this was confusing to people, but I was trying to be delicate). My insulin levels were upped to 18/units a day though. My sugars are spiking big time by afternoon. Lost ANOTHER pound! Yeesh!
An interesting thing I noted the other day. My new Victoria Secret underwear (just cotton, don't get bothered) has "Made in Jordan" labels. I don't think I've ever seen a made in Jordan label. The world is a changing... a Muslim country making products known for its sexy stuff.
12/31/04
Just wanted to take a moment to wish everyone a HAPPY and HEALTHY New Year!!
We aren't doing much as our plans got cancelled on us unceremoniously. However, I think we will have fun. We are going to do fondue! Probably watch a movie. And then, we are going to try to stay awake until midnight.
12/29/04
December 29th, 2001. One of the first answers I give when I meet a new doctor. Yep, that is the day I was diagnosed with leukemia and my entire life was turned upside down. Three years already. I still remember the exact moment. I was in a hospital room, without knowing why, watching "Far and Away." Suddenly this man, with silver hair and the deepest voice, appeared in my room. I couldn't get the damn TV off. By the look on his face, I knew it wasn't good (I didn't know at this point that Lawrence had been pre-warned about a half an hour earlier). This was Dr. Kaplan, my oncologist. MY ONCOLOGIST!! Poor guy had to tell me that I had AML and I was loosing the baby in one fell swoop. And then they gave me the cheapest tissues know to mankind which made my face even more sore while I cried. They really should invest in the soft stuff for times like this.
Anyway, the big D continues. When I call in to the drs today, I know the prednisone is going up. Taper = Failure. Experiencing some swelling again in the legs, so I am on a water pill again. It's a great combo, let me tell you. The big D and a water pill - talk about being dehydrated! I have NO problem drinking the requisite 8 8oz glasses of water. Pedialyte and gatorade are also my best friends.
Had a nice time up in NH. Got a little snow, but it was mostly just bitter cold. Lawrence drove himself up to North Conway so he could do a little skiing. He is still sore. The rest of us cozied up in the living room and watched a lot of movies. Ate way too much sugar, especially being a diabetic! We had an interesting conversation about celebrating Christmas. It kinda started to seem hypocritical that we do celebrate it, since none of us are Christians, and that Jesus was actually born in the late Spring according to historical documents (You can thank Constantine for the Dec 25 date). However, we like the celebration of family and charity that the Christmas season brings. And the music of course - how can you beat Elvis' Blue Christmas?? So we decided we needed to come up with a new holiday, but weren't very creative. So to borrow from Seinfeld, the Bestus of Festivus to you!
Late Afternoon Update: As predicted the prednisone was upped. I am at 60mg/day.
12/23/04
Got some fantastic news at my drs appt yesterday. My platelet count crossed the 100 mark for the first time since my transplant. 105!!!! I was joking with the staff that I should just head outside and fall down everywhere - no chance of this girl bleeding out. We all thought this hilarious at the time, but maybe there was too much holiday sugar in everyone's blood stream! My other counts were good. The Neupogen shots have stabilized my WBC. I still have to take them twice a week. At $1000 a shot, I have over ten grand worth of medicine in my fridge. Drs think the WBC is being affected by the GVHD. Yes, I still have the big D. It's been almost three months - lost another pound. The skin has cleared up though. If I don't stabilize by Wednesday, up goes the predinose. We upped the prograf in hopes that will take care of it by itself. So this is my holiday wish.
Yesterday was my last physical therapy appt. I graduated! We went over exercises I was to keep up on, but mostly I am just supposed to keep on walking. My left leg feels pretty darn good, and is just about as strong as my right leg. The scar on my hip is almost minimal. I bet it won't even be visible in another year. Now, if only those occasionally little twinges in my right hip would go away completely...
I am all set for the holidays. I am going to do a little baking today. I did find some gluten free recipes for Lawrence. But, I am not going crazy. If it gets done, it gets done. I am sure there will be enough sweets to satisfy at my dad's house. Lawrence and I are going to open presents tonight at our house. No sense dragging them back and forth to NH. He has some fresh shrimp thing planned. It will be yummy. We always used to do pate, brie and a loaf of french bread for our private Christmas. However, with our new dietary restrictions, we've had to come up with another game plan.
Wishing everyone a very Merry Christmas! Get at least one Christmas hug!
12/18/04
Back from Cali and crazed!! Didn't get back until 1 a.m. Thursday morning and had to be ready to leave for a full day of doctors by 8:30 a.m. Needless to say I was exhausted. Had a physical therapy appt where things are going really well. I am thinking I might be able to end these sometime soon. However, my other drs appt wasn't so positive. My WBC fell again to 0.8 (nooooooooo sick people near me). They started me on Neupogen shots again, which were delivered to my house so that I can give them to myself. Also, my steroids were upped again. The big D just won't go away and it's been over 2 months. I lost more weight. I am now at 40mg a day. Guess this taper was a failure too. I just want off steroids so badly. I twisted my RIGHT hip while in California and I totally freaked out. The pain was just like the pain I experienced right before my LEFT hip gave out. Thank goodness it went away in about a day. I just can't fathom have my right hip replaced right now. We might have to pursue more aggressive therapies next year - something that has to be discussed with the drs.
California was wonderful. We stayed at the Fairmount Miramar hotel which was absolutely lovely. I can't believe this little Michigan girl got to stay in such a posh place. We had an ocean view and a balcony, so I watched the sunset over the ocean every night. Lawrence had to work during the day, but we got to eat at some great restaurants at night. We did get out in the convertible for a drive up Highway One - it was gorgeous. It was really hard to come back to these cold temperatures in NY!
Trying to finish up all my Christmas stuff. We mailed most of our presents before we left for California and I finished the cards out there. I still need to put up a few decorations though. I am not going crazy though as we are heading up to my dad's in Portsmouth for the actual holiday. We will put up a tree this weekend and Lawrence wants to hang some lights outside. I am not baking cookies this year because I don't know how to work with rice flour yet. This is good and bad: less work, but no goodies. I usually make about 6 different kinds and pies and breads too. So it is kinda weird not doing that. I'll have it figured out by next year.
12/4/04
The Neupogen shot did the trick and my WBC shot right up. They did give another one though just for safe measures. It makes me achy. I will probably get another next Tuesday as well before we head to California. Other things are just about the same. My sugars are going wild though with all the med changes.
Trying to gather up some energy to get some Christmas stuff going. Haven't quite caught the spirit yet. I guess the first step might be to take down the fall decorations...
12/1/04
I was just kidding about that tofurkey. I hope that no one actually ate that stuff!
Well, we're back from Paris. And as souvenirs, we brought back sickness. I caught a terrible cold and am just today rising from the fog. Lawrence got a little stomach thing. However, this didn't happen until the END of the trip, so we got to enjoy our time there. We really had a good time. Saw many great works of art and architecture, ate lots of great food and generally just enjoyed the Parisian essence. Here's a blow by blow of the trip if you are interested. I am really glad we made the trip.
I did have a drs appt yesterday. My white blood cell count is WAY down to .3 so they gave a shot of Neupogen. I am extremely neutropenic right now and am supposed to stay away from as many people as possible. I have to go back tomorrow for another shot. They are not overly concerned about this at this point because of my cold, but will keep monitoring. My other counts, platelets and RBC are excellent!! The results came back from Seattle. It turns out the red dot thing was indeed GVHD of the skin. Mystery solved! It has mostly healed up, but I am still shedding like a snake. Unfortunately, the big D continues. I actually lost 3 more pounds on a trip to Paris where I ate the most fattening foods. It's getting pretty chilly as a skeleton.
If you can believe it, we are heading out on another trip next week. Santa Monica here we come. I am looking forward to hanging out in the sweet hotel and breathing the ocean air. Bringing along my Christmas cards.
11/23/04
Happy Thanksgiving!! Give tofurkey a try.
11/18/04
Well, it's not being called a total failure yet, this taper, but my steriods were upped to 20mg/day. I am okay with this. It's been 11 straight days of the big D and I need some relief. I lost 8 pounds this past week - 8 pounds I didn't need to loose. The bestest news is this will not prevent me from our Paris trip!!! I can gourge there and pick up the weight. Got two more chunks of skin taken out of my leg the other day. These ones are special - they are going to Seattle, the Hutchinson Cancer Center to be exact. The doctors have to be pretty stumped to send samples there.
Heading into Manhattan soon on the short bus. I have a physical therapy appt. Still working on my hip. Can't believe it's been almost six months. It works pretty normal, but my legs in general are not as strong and every once in awhile I get a dull ache. The ache has probably been there the whole time, but I was on so much pain killers I didn't notice.
11/11/04
Happy Veterans Day. May all our soldiers come home safely.Soon. Oh, I stopped crocheting so many scarves and joined in this "lapghan" brigade that is sending these blankets to VA hospitals. I have one and 3/4 of one done already. May they bring some comfort to those who are wheelchair bound now because of this stupid war.
One bright moment today: I just decided to drive. That's right, I just got right in our Jeep and started her up. Went and got me an egg mcmuffin and a large coffee in the drive thru. It's been 1 1/2 years since I've driven. It was a cool, yet a little scary experience.
Almost ready to head back to bed. C'mon, I mean I've been awake almost two hours now. Did a quick sprint of housework: washed the outside windows on the first floor, cleaned one bathroom, and wiped down the kitchen. I'm thoroughly exhausted. I think it also has to do with the fact that the Big D is hanging around a little longer than it should. I have a bad feeling about this. If this steroid taper fails, well, I don't know what I'll do. I really think I'll have a hard time with it mentally. I am so terribly sick of being sick. As was pointed it out on my guest book, it's been 600+ days since my transplant. That's 600+ days of living with this incapacitated body. It's just getting too hard. This is how I feeling today: listen to The Verve's Bittersweet Symphony.
11/6/04
Well, the biopsy results came back: inconclusive. They had to take another sample yesterday. This time they will run it at the microbiological (???) level. Now, I am pretty used to blood, seeing that I have a blood disease. However, yesterday, I just about fainted. She used a size 4 cutter instead of the usual size three. My hand wouldn't stop bleeding. She actually had to cauterize it before she could stitch it. I felt most woozy afterwards. And it is pretty sore still today.
Also feeling pretty icky in general. I am hoping it was just the patty melt I had for lunch yesterday and not a rearing up of GVHD. I went down for a nap at 2:30, woke up around 8 and went to bed at 10:30. I was pretty wasted feeling and still am.
The bright spot of the last few days was that my father in law came for a visit. I showed him Chinatown and he had his first Dim Sum. After my drs appt yesterday, and coffee at EJ's (his first challah bread), I took him down to midtown where we went up to Lawrence's office. Lawrence has a pretty nice view from his office (36th floor, corner office). I think Fred enjoyed his time here (he left this morning). I know that we did.
Still considering a move to Canada. I am too embarrassed to be an American right now.
11/3/04
I have been sick all morning. My head is throbbing and stomach is churning. I might throw up. How on earth did half of our country vote for that dolt Bush?? I can't believe that we have to live through four more years of his ineptitude. But, I guess he has a lot to accomplish - the people of say Greenland don't hate our guts yet. I'm sure Bush will find someway to fix that. It's going to be very scary
As far as my health, still don't know what treatment course we will pursue for the rashes as the biopsies haven't come back yet. My blood counts are fantastic and my liver functions are right on. This means no sign of GVHD. So, Dr S lowered my prednisone to 10mg/day and insulin to 4 units/day. Keep your fingers crossed that this taper continues to go this well. I DON'T WANT TO START OVER!
Had a spooktacular Halloween. We tracked down Harry Houdini's grave site. Legend has it he will rise from the dead on Halloween, the day he died. It was a fun little jaunt. Had lots of treaters come to the house which is good; we got rid of most of the candy.
10/28/04
Sorry I didn't update earlier today. Been kind of a bad one. Major drug withdrawals. I feel like jumping out of my skin and running around in my bones. But, I know it will pass. Just the dark days.
So, as you may have guessed, they didn't kidnap me. However, they sent me for two skin biopsies. Without the painpills, these are more painful - ouch. It seems I have two different skin infections going on again. The first, they know what it is, but biopsied it anyways. It's a poxvirus called molluscum (even the name sounds gross). I guess it is passed by contact of used towels, saunas, pools and manicure/pedicire salons. Guess where I probably picked it up. I am bummed that this will mean the end of my mani/pedi days - one luxury I allow myself to get through the bad days. It is usually a benign fungus that heals itself, but it can spread rapidly in immunosuppressed people (that's me) and allow other infections in. That is not good. The other infection is a mystery still. We will have to wait for the biopsy results.
Got another trip planned. Lawrence has to go to L.A. on biz the second week of December and I get to tag along. We will be staying in Santa Monica again, but this time at the Fairmont - oh la la. I really enjoy going on trips. My living room gets really boring after awhile.
10/27/04
Heading off to the drs this afternoon. I am little nervous. I was running a low grade fever all day yesterday and haven't felt tip top since Saturday. Plus those little red dot seem to be appearing on my arms now. I sure hope I am not kidnapped this afternoon. I hate that.
Is anyone else as bothered that there will be no more St Bernards guarding the Alps, no more televised Miss America pageant, and no more red, double-decker buses in London as I am. I don't like these changes at all. Some things should always just be.
10/24/04
Sorry I haven't updated - been busy, busy, busy.
Let's start out with some great news. We just about made our Light the Night goal of $4,000. Our team raised $3,772 as of this morning. I think this rocks! Thank you so much to everyone who donated to such a great cause. It's tough to compete with Breast Cancer Awareness Month, so each and every donation is appreciated.
More good news: I am IV antibiotic free. I finished my course of Vanco on Wednesday and they pulled my PICC line. I am once again wire free and can just hop into the shower without having to cover myself with saran wrap. I am off of Percosept completely now too. Fewer and fewer drugs. My prednisone dosage will probably be dropped to 15mg this week. Keep you fingers crossed that all goes well with the drop. I am at a lower level of insulin as well, only 6 units of NPH each morning. My leg rashes have mostly cleared up and the swelling is down, but still pops up once in awhile. I might even be able to wear my shoes again soon! I just wish I had a bit more energy.
We had a lovely time up in the Berkshires on our anniversary trip. The colors were beautiful and Lawrence picked a fabulous B & B. Fun story: As the ten year anniversary is diamonds, most women receive. However, I chose to loose one of my diamond studs. Couldn't believe it. This put a little damper on things. However, just as we were heading to the highway for home, we got a call that the innkeeper found my earring. What a relief!!
Lawrence and I are starting to practice our French in preparation for our trip. We sound like a bunch of midwestern hicks ordering very expensive wine. Hopefully we will improve.
10/15/04
I'd call it a success!! Team Leslie Kuizema turned in over $3000 last night at the Light the Night Walk. Also, there are donations that are promised, but haven't arrived yet. I think the combined amount will push us over our $4000 goal. That rocks! Thank you to everyone who contributed to our success. I promise not to bug you anymore. Well, until next Fall that is (tee hee).
Okay, okay. The guilt is killing me! We didn't actually walk. It was a cold, miserable, rainy night last night. Half of the walkers bailed and two of us didn't feel that great (I was one of them). So we put it to a vote. We turned in our money, appreciated the free food, and were amazed at amount of balloons glowing. We have picture proof that we were there, but our feet didn't touch the bridge. I hope it is better weather next year.
The drs were pleased at the healing of the red dot rash. They pulled me off another of the three new antibiotics (Levaquin) because it looked like I was starting to get a reaction to that one as well. So I am now just on the Vanco IV drip - well, that and all my other pills which include many anti-this and anti-thats. My counts are all good and the plan is lower the predinose to 15mg/day next week.
Lawrence and I are off to the Berkshires later this morning. It's our annual anniversary trip. Leaf peepers they call us. We are staying in a new area: Otis, and hope to spend a little more time in Great Barrington. We usually hang out more north. Lawrence, of course, wants to do the Alpine Slide up at Jiminy Peak AGAIN!! This year we are celebrating our tenth wedding anniversary. I couldn't be more happy than to have had all this time with the most wonderful man on this earth.
10/11/04
So I had a little reaction to one of the IV antibiotics. Turns out I inherited an allergy to penicillin based drugs from my sister's immune system. Red, blistered, swollen and ever so ITHCHY!! It is finally start to clear up after four days. I guess the good thing about it is that they had to take me off of it, and that was the drug that I had to hang three times a day. Now, I only have to have an IV infusion once a day with the other antibiotic (Vancomiacin) - much, much more practical. Since I don't have a pump on my IV pole, gravity has to do all the work, which greatly extends the infusion time and I have to keep my arm outstretched the whole time.
The antibiotics do seem to be working on the red dots though. This is good. My left leg is still swelling up from the suggested diagnosis of cellulitis. I think I stumped the modern medical world with this one.
Other medical news from the Kuizema household. Lawrence was diagnosed with celiac disease - an auto immune system disease which means he can't eat wheat, oats, or barley. This micro brewery loving king is very saddened by this news. So, we are learning on what he can and can't eat. It's getting pretty ridiculous; between the combination of our three diet restrictions, there's nothing left for us to eat at a sit down meal together! I am sure there are plenty of gluten free things out there for Lawrence, I still just have to investigate.
Okay, this is POWER BEG time. There are only four days until the Light the Night Walk. I know we are not going to reach the original goal set at $6,000, so I lowered it to $4,000. We are more than half way to that goal. Please, Please, Please help our team succeed. Friends, neighbors, family, people off the street, anyone - try to get a donation for the Leukemia and Lymphoma Society. If more research is done, they might actually have a cure for people like me in ten years. A CURE!! Things are moving very fast in leukemia research, but money is desperately needed to continue. Your donation can really save lives. So, one last beg - PLEASE DONATE
10/7/04
Okay, here's the scoop. The drs say it is cellulitis on my left calf and folliculitis on the other (the mysterious red dots). I am not too confident in these diagnoses since they kept saying "we think" instead of "it is." I underwent just about every biopsy and test that could be done again, including a MRI and the dreaded Bone Marrow Biopsy! My hip is still sore from the BMB - I don't tolerate those well, even with LOTS of drugs. So, the course of action is three antibiotics, two of which are administered by IV. The visiting nurse came by last night to make sure I knew how to hook up an IV (which I do). I have to give myself four infusions a day by IV through my new PICC line. It's pretty easy though. They sent me a new IV pole, so now I have two. So, if anyone needs to borrow one for say the weekend, just let me know...
Being trapped in the hospital for a week has put me so far behind. Unfortunately I had to miss this big alumnae event last Saturday which I was so looking forward to and was even on the planning committee. I was pretty bitter about that over the weekend. I am also so behind on my Light the Night campaign. I am afraid that I am one horrible team captain this year. I don't think we will be meeting our goal, which is disappointing to me. Plus, I've got to get all my Fall decorations out and the house winterized since winter seems to be coming early. I am getting exhausted thinking about it all. However, one good thing about being free is that I can go get a manicure/pedicure - pure indulgence on my part!
10/6/04
Finally!!! I am at home at last. They let me out this afternoon. I will update more later - so much catching up to do. And for those of you who think this hospital stay was a shameless promotional stunt to get you to contribute to my Light the Night Campaign, well, I'm just going to let you go on thinking that. Help a worthy cause - Donate now.
9/29/04
Ya figure it can't be good news if I am making today's entry. Leslie was admitted to the hospital yesterday for observation. Her blood counts were precipitously down, she had been running a low-grade fever for a few days, and a couple other things were going on. She allowed the doctor to admit her, adamantly insisting that unless she were on her death-bed, she would be leaving by the weekend. (Nothing happens at the hospital over the weekend unless it's an emergency.)
Big thanks to the Kaufman's for helping out once again with Abbie.
9/25/04
Diagnosis du jour: Cellulitis. This is now what the drs think is going on with my legs. I've gone through one course of antibiotics, Keflex, but that didn't do the trick. Now I am on a course of Cipro. I guess it is much stronger. Hopefully this will kick its butt.
I have been short on energy lately, so I haven't gotten much done. Trying to organize my Light the Night campaign (have you considered donating?). I know it's the meds and the leg thing that are dragging me down, but it doesn't mean that I like it. Lawrence is out painting the house. I am thinking it's a good day for a Godfather marathon.
9/22/04
Continued guessing on what is making my leg swell. Got another doppler yesterday to check for blood clots (none found) and I see a new Infectious Disease doctor on Thursday. The taper of the steroids seems to be going well. I was lowered to 20mg yesterday.
Had a terrific bday. Lawrence made me blueberry waffles with birthday candles. I loved 42nd St. It was a great day.
Also, please note that I am starting my collection drive for the Light the Night Walk. Please consider giving to such a worthy cause.
9/11/04
Things are going well. Still tired most of the time, but I know this will get better. I have entered the dark days of steroid tapering. The drs. dropped another 5mgs of prednisone on Wednesday, so now I am at 25mgs a day. We will hold there for a few weeks to see how that goes. Correspondingly, they also dropped my insulin, so now I am at 10 units a day. Can't wait to get off that too. I have also been tapering my percoset. The pain from my chest tear is nearly gone (I have been kind to it like I was supposed to be). My hip pain is nearly nonexistent as well. I saw the hip dr this week too. He said all is just perfect and doesn't want to see me for a year unless I throw it out. I don't plan on throwing it out, but you all know how graceful I am!! I am still doing Physical Therapy for it for strength and that is going well. My PT is very helpful. Tough, but helpful. The dr said he would give me another Rx for PT if I thought I still needed work when this Rx runs out.
We have decided to go to Paris for Thanksgiving this year. I am really looking forward to this trip. Both Lawrence and I have been, but not together. It should be a fantastic time. Romantic. We need some of that. Lawrence also just informed me that he bought "42nd Street" tix for my birthday. I have wanted to see this musical ever since I took a backstage tour with my alumnae group. It will be one cool birthday. We also decided to keep up our anniversary tradition of heading to the Berkshires to hang with all the other leaf peepers. We'll just do a long weekend to celebrate. Can't believe it's been 10 years already!!
Lawrence is busy doing yardwork and painting the trimwork on the house. I am making new throw pillows for our living room. And, of course, crocheting. Just trying to keep busy. I have to start on my Christmas crafts soon or I am going to be in trouble! I doubt I'll be doing any craft fairs - I guess my stuff isn't sell worthy - so I am just making things that please me.
Yesterday's fortune cookie:
If you continually give, you will continually have.
9/6/04
I hope that none of you are laboring today and are having fun instead! Of course, Lawrence can't help himself. He is painting and replacing the trim work on the front of the house. It will look real nice when he is finished. As for me, I have been sleeping. I mean, really sleeping. I think I was awake about 5 hours yesterday. I have hit the dark days of prednisone tapering. As instructed, I dropped to 30 mg of prednisone. This is the first drop in the 6th taper that I have had since about April when all my hip problems happened. It is hitting me hard. It's not just that you are tired, it's as if some sucked absolutely every cell of energy out of you. Plus, the emotions... yikes. But, so far there is no sign of GVHD popping up. Keep you fingers crossed. Okay, toes too. My chest tear is healing slowly. I still get a pang of pain once in awhile, but overall it is better. I have been trying to be kind to it. I am still taking Percoset for the pain, but much less. I am going to ask the drs if I can switch back to Vicodin (less intense). My left leg is still swelling horribly. It is so painful when it gets big. My skin gets stretched so far that it is actually hard. Touching it is out of the question. Of course, this is when Abbie decides it is necessary to jump on my lap. Silly dog. Our trip to Oregon was fabulous. I had so much fun seeing my sister and her husband. We also got to see some friends and my Aunt/Uncle/Cousins. Of course, I didn't do many physical activities, I left those to Lawrence, Heather and Marc. But I did enjoy our drives and all the fabulous Northwest food. Lots of fish. We got to hear live music twice and gorged ourselves at an all you can eat bbq feast. Speaking of bbq feasts, Lawrence had his annual smoke-a-thon on Saturday. I can't believe how much meat he smoked - a vegetarian would have puked. But he divided it all up into dinner portion sizes and packed it away in our new chest freezer. We will be set with bbq well into the winter.
8/24/04
We're off to Oregon tomorrow bright and frickin' early. We have a 6 am flight - ouch! Saw my drs today and did physical therapy for the ol' hip. My platelet count has soared to 80! yeah. But, my white blood cell count is slightly elevated. Don't know what this means yet. They wanted to lower my prednisone level to continue the taper to 30, but I asked if I could wait until I got back from my trip. Lowering can do funky things to the body. Sugars are good. I am also officially done with IVIG treatment. Guess it is no longer medically necessary at this point. This means no more visiting nurse service and all that crap. So if anyone needs to borrow my IV pole temporarily, it's up for grabs (tee hee) The percoset beast roared its ugly head big time tonight and unfortunately Lawrence got the brunt of it. It's like watching another person when the drugs take over like that. I tried tapering off of the percoset earlier this week, but the pain in my chest is still too much to take. Maybe another week at this level and I'll try again. Hope people can stand me until then.
8/19/04
Lawrence was able to get the same flights as me, so he will be joining me on my trip to Oregon. It will be fun. I guess I really do need help even though I don't want to always admit it. I thought I was getting better, but I am experiencing quite a bit of pain still today. I am eagerly waiting 2pm when I can take more percoset.
My counts are holding steady. Drs decided not to change any levels of medications right now, which I think is a good thing.
Have been watching a lot of the Olympics. I enjoy the rowing and swimming. Other than that, I have just been resting, trying to heal.
8/13/04
One week of health and that's it. That's all this pathetic body will give me. I spent yesterday in the ER. I woke up with chest pains about 5 am and they kept getting worse. Drs sent me to the ER where they did an EKG, CT scan, chest xray, and a zillion blood tests. They ruled out blood clots, pulmonary embolism, any signs of a heart attack. It is a tear in the muscle tissue around my heart and lungs. Don't even have a clue how I did this one. The pain was excruciating. Two shots of morphine and two vicodins didn't even dent the pain. It wasn't until I took percoset that I felt relief. So as long as I am doped up, I am okay. Otherwise, just breathing kills me. I just have to remain as immobile as possible for the next couple of days so that it heals. Yes, this means the trip to Michigan is off and I feel very guilty and sad about this. My body sucks. Lawrence will have to miss his reunion. The guilt I feel is enormous. I am trying to get him to fly in for the weekend, but he doesn't want to leave me all alone. I guess I need a babysitter right now, and he is probably right. I just don't want him to miss out on was supposed to be his vacation. He's going to check into getting a flight to Oregon and come with me the next week, but we don't now what kind of prices we will find at this late of date. So our vacation plans are all screwed up. It's always something in the Kuizema house isn't it??
8/6/04
We are heading to NH tomorrow morning for a long weekend. Really looking forward to the get away. I am very tired tonight. Had to get up early for my PT appt at 9:30 in Manhattan and back to Forest Hills by noon for my visiting nurse appt for IVIG. The benedryl for the IVIG wiped me out after the commute and exercise. Plus, I am fighting a cold. It's always something.
My counts are looking pretty good one week after the predinose and prograf drop. Hope this will maintain itself for the next few weeks and then we can lower again. I WANT OFF STEROIDS!!
7/31/04
So, the dermatologist says I have pigmented purpuric dermatosis. Come back in October. Well, at least I have an identification of the rash, even if there is nothing to be done about it.
Malvina, my PT, kicked my butt again in therapy. I am aching all over. And TIRED!
Had a very nice lunch with my old library coworkers. It was nice to see them. We went to TAO, which was most incredible. Lawrence went to the Yankees game last night and had a great time.
7/29/04
Didn't get the biopsy results yesterday. But Dr Schuster figures if it was skin GVHD the dermatologist would have called. I have an appt with her tomorrow anyway, so I'll find out then. He lowered my predisone to 40 (the taper restarts!!) and my insulin to 14 units. Oh, and no potassium for now. If you have ever seen a potassium pill, this a cool thing. Talk about horse pills! My blood counts are good with my hemoglobin just a bit low, but not low enough for transfusion. Also saw the hip surgeon yesterday. He lifted all hip precautions but said I should still move with caution. He is very pleased with how my progress has gone. This is cool. The physical therapist continues to whip my butt into shape. I am exhausted after our 30 minute sessions. So that is the news from the medical front.
On the travel front, it looks as if I am on the road most of August. We are heading to New Hampshire on the 7/8/9. Then to Michigan the 13-23. And then I am going to visit my sister in Oregon the last week of August. I am excited but exhausted thinking about it.
Lawrence's toe is still healing. I don't think stubbing it again helped.
7/25/04
Had a lovely day today. The annual BMT cruise was today. Today's weather didn't start out so well, so initially we weren't too excited about going. Plus I was having major sugar surges. We almost didn't go. I am so glad that we did. The weather cleared and we got to see so many friendly, familiar faces. It's also fun to see the drs cut loose. A couple of speakers, but the one that left not a dry eye in the house had just gotten married the night before. His girlfriend stuck it through with him during the whole transplant process. They played their wedding song, they danced, it was too much... a neighbor handed me a kleenex. It was such a great moment. Some of you know that I have been having a rough time of it lately; trying to figure out why I am going through all this crap. It is for moments like that. Life is beautiful.
Gimp-along-Lawrence is doing better. His toe is still painful, but he is going around without crutches. He tried to swipe my cane. I'm like: get your own!! He made a delicious cold beet soup tonight. He amazes me.
7/20/04
My therapy continues to go well. That is when I can get there! My short bus service has sucked lately and I keep loosing therapy minutes. My leg is usually pretty sore as I do the exercises every day. Most of you know, I am not an athletic type of person, so this is more exercise I have done just about ever. Not used to this type of feeling. My range of motion has increased incredibly, I can stand on the left leg solo, but I still can't pull it up a step. Walking is pretty good. We are working on doing it with out any signs of limping.
So Lawrence got sick of always being the caretaker and decided to become a patient. He stubbed his toe something fierce and fractured it. It's his left pinky toe. He's hobbling around now - WE ARE THE HOUSE OF GIMPS!
The annual Bone Marrow Transplant cruise is this Sunday. I am looking forward to it. It's nice that they do it for us.
Heads up to all those Michiganders out there. We are coming to MI for Lawrence's 20th HS reunion August 14. Hope to see as many of you as possible.
7/14/04
I can't believe it is the middle of July already! Isn't summer just zipping by!!
Had my first outpatient physical therapy appt yesterday. It was mostly just an evaluation and the real work will commence at tomorrow's session. My PT's name is Malvina and is nice, but I can tell she's going to push me - which is good I suppose. I walk mostly without a cane now, but I carry it when I leave the house just in case.
Saw Dr. Schuster yesterday as well. He's not liking my current pinky skin state and is sending me for a skin biopsy tomorrow. Please, please don't let it be gvhd of the skin! Otherwise he is happy with everything else.
Lawrence's mother has been a great help. My house hasn't been this clean in months. We are having some fun too though. She went to the Met while I did drs yesterday and tomorrow I am taking her for her very first manicure and pedicure. Friday we are going to take the cheapest tourist trip to see the city (yep the public bus) north and south along the island and end up at the Plaza where we will take afternoon tea - aren't we fancy pants??? We were to go to the NYC Philharmonic free park concert tomorrow, but it might be rained out - we've had so much.
7/9/04
Well, my therapy is going very well. Too well in fact. The GD insurance company kicked me out yesterday, saying they weren't paying for anymore. So out on me bum I went. I was/am bummed(tee hee). I think I could've really benefited from a few more days of inpatient therapy. However, I already have my appts scheduled for outpatient physical therapy for next week. I will start at three times a week for an hour each session. Like I said, I am doing pretty well. I can walk without a cane for limited distances, can go up the stairs (but only by the foot/foot not foot over foot method) and can do most basic day to day things. We were working on developing my thigh muscle so that I can lift my left leg, so hopefully we will continue on that in outpatient. The inpatient center was very nice. I would highly recommend it to anyone. And thank you to those who paid me a visit during my hospital stay, both at HSS and NYP. You brightened my day.
Lawrence's mother, Noreen, arrives today. I can't wait to see her. She will be able to help me out a bit while I get used to motoring around the house without breaking my hip precautions. Plus, it will just be nice to have her company.
As usual, Lawrence has been working like a dog. I came home to beautifully painted garage door and front door. And he organized all the July birthday presents, something you all know I obsess about. Even my flower beds look fabulous. Gotta love that man of mine.
And also I want to extend a BIG THANKS to my neighbors who helped out with the doggie. Couldn't have done it without you.
BTW, the fireworks were fabulous! Couldn't of had a better view
7/2/04
I am doing well in therapy. They work me HARD, but I know that it is all worth it. Therapy is scheduled from 9-4 each day. It is a combination of physical and occupational (doing things like making a bed, putting on socks, etc). I like the structure. Haven't had much structure in the past couple of years. I can walk basically without a cane, but I get tired quickly. According to the therapist, I still am favoring the good leg too much and need to start thinking of the bad leg as good and use it. It's tough.
Hope that everyone has a happy 4th. Play safely with those fireworks.