:: Leslie's Updates > March 2004 - June 2004: My First Rebirthday Until Hip Replacement Surgery
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.
6/30/04
I found a computer!!!
Okay, this is what has been happening since last Wednesday. Reported for surgery and it went well. The surgeon was great and the incision, although all buckled now, isn't too long. Maybe five inches. It is still seeping just a touch, but not bad. I spent the first night in post op and was moved to a room for two days. It was an okay room, and my roommate wasn't too bad - just had hip surgery too. But then all of a sudden and I mean all of a sudden they decided to clear the floor. I was in the middle of a platelet transfusion and doubly doped up. I was clueless what what was going on and very confused. It was also creepy as I was the last patient to be moved and my nurse and I were the only ones on the floor. Icky. So as I am heading into my new room, the transport aide say "man, this room is filthy." I am be backed in, so I can't see. Then this overwhelming flower smell hits me and ya'll know I can't be around fresh flowers or plants. So obviously this room won't do. Again, I am completely confused and drugged. Lawrence was on his way to visit at this point, can't find me in my original room, and is freaked out because the floor is empty. He finally finds me, and gets the situatuation straightened out and they put in a new room. I spent the night there and was informed in the morning that I was moving AGAIN! Hello. This is four beds already. However, this move was worth it. We dubbed it the "Britney Spears Suite" as I was told this was the room that she had stayed in the prior week for knee surgery. What a view! I was hanging over the East River, looking down the FDR drive and at the Tribourgh Bridge. Spectucular view. At least I had that to make my stay at HSS worth it. I know I got a great new hip, had an excellent surgeon, and some of the nursing staff was fabulous, but overall it was the worst hospital experience I have had. Can't say I could recommend it. Very glad to be gone from there.
They transferred me to the Rehab center yesterday afternoon at New York Presbyterian (my usual hospital). This is a new facilitiy, only a year old and is gorgeous. The staff is nice and rehab staff is terrific. I had my first rehab sessions today to get evaluated on where I am physically. Rehab runs from 9-4 with little breaks here and there. Visiting hours are then from 4-9. I had a positive rehab experience today and I hope it continues to go as well for the rest of my stay. They think at this point I will be here for about 7-10 days. This means I will be here over the 4th. However, if I have to be in the hosiptal on the 4th, I have the BEST fireworks view from my room. I look south along the East River and can see all the East River bridges. I can also see a huge scan of midtown including the Chrysler building. It is a private room and is quite nice. So if any of my NY friends are looking for a viewing point to see the fireworks, you know where to come... I have request fried chicken from Larry.
My room number is Baker 1733 (on the 17th floor) and my phone number is 212 585 7858.
The pain is getting a little more bearable. We are trying vicodin now instead of percoset. Percoset is starting to crazy things to my mental state. The physical therapy is helping too.
I guess that is it for now. I will try to update more now that I know where I have computer access.
6/30/04
Leslie moved from Hospital for Special Surgeries to her ole stomin' grounds, NY Presbyterian Cornell. HSS was far from a great experience. While her surgeon was fantastic, as were many of the nurses, the coordination was severely lacking. A dirty room filled with flowers (still verboten), and every sandwich served with fresh tomatoes and lettuce (also still a big no-no) were just a couple of the issues. But for a couple days, she was in the "Britney Spears" VIP suite: a light-filled private room where Britney had recently stayed. At NY Presby, she has a very nice room on the rehab ward. It's amazing how faux-wood floors and a warm paint color can make a hospital look habitable. Her room is on the 17th floor, with south-facing windows, so we should have a great view of the fireworks on the Fourth. At least it's some consolation for getting stuck in the hospital for another 10 days.
Leslie is in a bit of a funk, feeling like she is a drag on everyone, so I am going to grovel for cards. (Our address is above.) I think it would mean a lot to her right now!
6/24/04
Doc Sawbones says that Leslie's surgery went well. She was still very groggy and in pain last night. She was finally moved out of recovery into a room late today, and she sounds good. I saw a big x-ray of her replaced hip. It looks like they cut off the the top of the femur, bore out some of the marrow area, insert a fat, titanium shaft connected to a ball joint, which is anchored to the pelvis with what look like 2" wood screws from the hardware store. Fascinating! OK, I'm dealing with the stress by picturing the surgery like the American Chopper guys fabricating a bike frame. Anyhow, Leslie had her first rehab session today; she walked 4 steps forward and 4 back. It's a start.
6/22/04
Hip Replacement Update, come and get it.
I go in tomorrow morning (Wed) at 9am to begin platelet transfusions. My platelets have to be at 100 to perform the surgery and right now they are at 35. Then I will walk across the street, literally, to the Hospital for Special Surgeries and check in on the 4th floor. They will begin their pre-op procedures. I will be getting an epidermal. Surgery should take 1-2 hours and then I will be in post-op anywhere from a couple of hours to overnight. Off to my room, where they will start the physical therapy almost immediately. Expected hospital stay is 4 days after surgery. Then they will assess me to determine if I go home or need to stay at a rehab facility. There is a dedicated case worker who will set up all the therapy stuff once I am in the hospital. Expected recovery time is anywhere from 4-8 weeks, but given my compromised situation, it make take longer or it may not, don't know. I will be getting a combo titanium/ceramic hip, which will set off airport alarms. The scar should be 4-6 inches - not too bad - on the side of my leg. I am supposed to walk, walk, walk after the surgery to speed the recovery. I think that is about it.
I am happy to get this done, but as the time approaches I am getting a little more nervous. I know everything will go just fine, but it is kinda crazy to think that I will have something foreign in me.
I am also hoping (there is absolutely no scientific reasoning for this statement, just a thought) that my having this done, it might eliminate my marshmallow feet. I mean, the whole reason the hip died is poor circulation. So, maybe with better circulation???? Like, I said, I am making up my own science.
I know that Lawrence will be happy to have me off of all the percoset I have been taking to control the pain. It has given me MAJOR mood swings and I have become a be-atch. I apologize all the time when the beast subsides - but sometimes the damage has already been done.
Picked up our prints that we had framed at Michaels yesterday. They look great. Lawrence did a great job of choosing the mat and frame colors. They really add to the living room. Also, when I was in the hospital last week, he put up a new mission style ceiling fan in our bedroom as a welcome home surprise. Love him.
For those Prednisone watchers out there: my current dose is 45mg/day. Moving on down.
Don't know what kind of communication capablitiess I will have for awhile. Updates may or may not be forthcoming on a regular basis. Will try. Still no fresh flowers or plants, but peanut butter cookies and chocolates are always appreciated. Grin.
6/18/04
Do a little dance, make a little love get down tonight
Do a little dance, Leslie gets a new hip on Wednesday, on Wednesday!
That's right folks. Someone cancelled and I got moved right into their slot. Isn't that FANTASTIC!! I can't wait. I do think that it might be sick and wrong to be excited about hip replacement surgery, but to get rid of THE PAIN, THE PAIN (ok, enough stupid 70s references). Got the call and jumped in a town car to Manhattan today to do all the pre surgery work ups - bloods and X-rays and such. I have a Hip Replacement 101 class on Monday morning where I will learn more about the actual procedure, but the gist of it is 3-4 days post-op and 4-6 weeks rehabilitation. But, with my compromised self, it may take a bit longer, who knows. Dr. Bostrom will perform the surgery at the Hospital for Special Surgeries. My R&R will probably be on the bone marrow ward at NY Presbyterian, but that hasn't been decided yet. Drs must collaborate first. So, there's the news on the hip front.
On why I was in the hospital this past week, well, it turned out to be sinusitis. After all that, including that spinal tap, I am taking a nasal spray and antibiotic. They are just so cautious with me because of my compromised immune system. I felt like saying the whole time, "Hey, I just came for the platelets."
I did get to meet with the artists in residence at NYP during my stay though. They were very nice and encouraged me to attend some classes at the Creative Center which is an art center for people with cancer. They also do one on one sessions with people while they are in the hospital as well. So, if I do my r&r at NYP I will have them come over. The regular hospital craft people were kind enough to give me three skeins of yarn - aren't they darling. Can always use more yarn, especially at that price.
My dad and his wife are coming for a weekend visit tomorrow. We were going to go to Portsmouth to celebrate father's day, but with my limited mobility, we switched it. BTW, Tina's latest book just came out - buy it today.
6/17/04
I'm home. More tomorrow.
6/16/04
Greetings all from hospital land! I had some bleeding and a bad headache on Sunday so I called my dr. who told me to head into the ER to get some platelets. But because of the headache, they wanted to keep me overnight for oberservation. I figure, yeah sure, what's one night. Well, its Wednesday and I am still here. I am hoping to go home today. They can't possibly think of another test to run on me. I had my first spinal tap yesterday. I was very scared about that. But, honestly, it really didn't hurt. Not like a bone marrow aspiration does anyhow.
Still no word when the hip replacement will be. I am ready whenever.
We were going to go up to Portsmouth this weekend, but I think that trip has been nixed. Instead my dad is coming down here for father's day.
Go Pistons!
6/11/04
Sorry it has taken me so long to update. Been busy being drugged. I met with the orthopedic surgeon on Wednesday. He concurs that I need a total left hip replacement. He said he was putting me on the fast track to get the surgery done and dropped me at his secretary's office to start the scheduling process. WELL, she informs me that he is booked until September, but will try to fit me in any cancellation spots. SEPTEMBER!!! Get real. I totally broke down. I am in so much pain. If they called me and said they could do the surgery in an hour, I'd already be in the car. So, I reported all this to Dr. Schuster at my appt with him Thursday. Needless to say, he was not happy. He is trying to find me a new surgeon. He said I can't possibly wait until September. So in the meanwhile, I am to take as many drugs (up to my limit of 12) that I need to control the pain. So, as before mentioned, I am very drugged upped. Plus I had to have a blood transfusion yesterday and had IVIG treatment today, so I have the addition of benedryl making me even more drugged. I guess it's better to be totally drugged out than in pain. So the saga continues...
6/5/04
Good Morning. Had a drs appt yesterday. The summary: keeping on taking pain pills until the surgery, lowered prednisone to 50mg, upped water pills to 2 a day, platelet transfusion and a long lasting procrit shot.
I was in so much pain yesterday morning, I was in tears. Joanne said it was okay for me to take more percoset, up to 8 pills/ day. I was only taking 3 total, and it just wasn't cutting it. I just hope I don't develop an addiction. So the with the extra percoset pills and the benedryl they used to pretreat me for a platelet transfusion, I was pretty out of it all afternoon/evening yesterday. I feel better so far today.
We had a very nice time in Chicago. It was the perfect mix of family, friends and couples time. Lawrence is building his upper body strength by pushing me around in a wheelchair.
Attempting another craft fair tomorrow. I figure it will be the last one until Fall because of the hip thing and all. I'll display more holiday stuff there.
Again, I don't know much about the actual surgery and all yet. I meet with the orthopedic surgeon on 6/9. So when I know, I'll let you all know. Deal?
5/24/04
Got the results of my MRI today. I have a hip fracture and am in the early to mid stages of AVN. So, I officially getting a hip replacement. It's supposed to last about 20 years. It will probably happen in mid June. Until then, I am just to take it easy and take my Percoset when the pain gets too intense. My max dose of percoset is 6 pills a day, but so far I have made it by with just two. Two take the pain away, but makes me kinda dopey. I can't even imagine what six would do!
5/21/04
Queue the music: Leslie needs a brand new bag. Uh Huh. Sing it to me. Na Na Na Na Na Na.
Okay, maybe just a hip. They peaked in my closet and saw that I have way too many bags already. Well, that pain in my hip, oh, that was just my hip bone collapsing in on itself. I have AVN which is caused by: can anyone guess, anyone? Long term steroid use. Had a MRI yesterday. Scheduling an appt with osteopathic surgeon and away we go. It will probably be a couple weeks before the actual surgery. I am officially part of the walker and cane brigade now. My body is so confused as to what age it is. I have adolescent acne on the face, a college football player's middle and an eighty year old's hips/legs -- all from prednisone. Yesh. One good thing, I got Percoset for the pain. Didn't feel a thing last night!
I get to stay at home during all the pre-surgery testing, so that is cool. They figure I will be hospitalized for 2-3 weeks after. I am still going to try to do my craft show. This means that Lawrence will have to help out more and I grateful he is willing to do this. They said I could still take our Chicago trip if I am physically up to it. It will just be a different kinda of trip - Lawrence pushing me around.
5/18/04
Went to the dermatologist again yesterday about my rash. Even though one was just starting, he basically dismissed me. Of course, this morning it over most of my front left leg. I give up. Put bacitracin and cortosteroid cream on it and am hoping for the best. This one itches something fierce though.
Lawrence is sick as a dog. He has some kinda of flu. I am trying to take care of him, yet stay as far away as him as possible. I think if I catch this, I will be hospital bound. It's that bad. And you know it's bad when he actually takes the medicine and food that I tell him to take. Lysol has become my new best friend.
Well, I am going to do it. I have a vendor table at the Forest Hills Arts Fair this upcoming Sunday. I am going to try to sell all these crafts I have been making and are starting to pile up. I hope I at least make the table fee. I think I will.
My hip is still killing me. It's very hard to walk. So I expect xrays at tomorrows drs appt. Feet still swelling up too. Aren't I a mess? I made the stupid mistake of actually trying to wear shoes (instead of flip flops) yesterday to the dermatologist. I was in so much pain by the time I got home.
Otherwise, it's a lovely day here in NYC.
5/12/04
Well, when the powers that be take away your luxuries, they sure do take them away. It took me 2 1/2 hours to get home on my short bus tonight. Yuck.
So the gist of the doctors appt is as follows:
*We are starting taper number 6. He dropped my prednisone down to 60mg from 80mg where I will hang for 4-6 weeks. And then we'll go down again. Even slower than the last time. Everyone collectively cross your fingers.
*My platelets climbed back up a little, to 28.
*He was impressed with my bacitracin trick for the rash on my legs. I was like, SOMEONE had to come up with something. Still swelling, though, so I must continue with a water pill and propped up legs.
*I am skinnier. Dessert is calling me tonight.
*Absolutely no chance of returning to work while still on prednisone. And then, "we'll see."
*If my newest pain (my hip gave out the other day and I couldn't support my own weight. Seems to be getting better with soaks and stretching) doesn't go away by next week, I'm getting an xray and probably a bone density test.
Good news: I got my first article acceptance today. They took two pieces and want more! It's for a new kids science website that has yet to be named. When I know it, I'll let you know. Not huge pay, but will help me develop a clipping file. This is much better than getting my first rejection letter!
I have IVIG treatment tomorrow. I should sleep the afternoon away.
5/11/04
One luxury taken away, but another one given. My short bus service settled their strike. No more town cars. Back to geekdom for me.
The luxury given was a fabulous luncheon at the Waldorf Astoria to support the breast cancer fundraising efforts of a group called Women At Risk (WAR). My friend Toby, a CBS News coworker and the smartest person I know, invited me to join her table. Her sister is a survivor and president of WAR. I learned a lot and we had a great time as well. It isn't often that I eat lunch at the Waldorf!! Since I was in Manhattan, I took the opportunity to hang in Rockefeller Plaza and enoy the sunshine we were having yesterday. It is quite a treat to get off the couch once in awhile and not have the trip involve doctors.
And then my geeky bus took me home, where two women with thick Queens tongues told me I had an accent. Rather have mine, ladies.
5/9/04
Mother's Day sucks.
5/8/04
Well, I've decided to self medicate. Now hold on, it's not as bad as it sounds. I was still dressing the biopsy site on my leg with bacatracin (like neosporin) and bandaids when a new rash flamed over that area. I noticed that wherever the bacatracin was, there was no rash, kinda like a fire circle. Bingo- why not put bacatracin on all of my legs! Boy, the rash is clearing up right quick, almost to nonexistent. Now, I don't know if I am just masking the rash problem or what, but my legs sure do look a lot better! I know there is still something wrong, underlying, because my feet are still swelling.
Lawrence and I had date night again last night. Must be that Spring air. We had a gift certificate to the Heartland Brewery/Chophouse, so we gorged ourselves. Lawrence had the hugest "petite cut" of filet mignon we've ever seen with crabcakes and prawns. I had lemon crusted salmon and we split orders of asparagus, spinach and roasted potatoes. Delicious. Of course, Lawrence did the seasonal tour of beers, but I saved room for yummy key lime pie and coffee. It was a fabulous meal - we don't treat ourselves to meals like that much any more with me being out on disability.
And then,THEN, we went to a CONCERT! Yep, me. It was even my idea if you can believe that! We saw "Fountains of Wayne" at the Roseland Ballroom. A bit of Evan Dando too. Not too crowded and no smoking, so I was happy. The crowd was a bunch of older people like us, so we didn't feel like total geeks. Lawrence's assessment: the solos sounded great, but the overall mix, not so good. It's the old recording guy coming out of him. I enjoyed it, but they didn't play enough songs off the new album. I saved up a lot of spoons for this night out, sleeping most of Thursday and Friday morning, but it was so worth it!
Today we planted the yard. Well, I should say Lawrence planted the yard while I pointed with gloves and mask on. They still won't let me play in the dirt. I think it will fill out nicely and be relatively low maintenance. This is good, since Lawrence has to maintain it.
No other medical news. My appt is on Wednesday. I am hoping to find out if we will start the ol' prednisone taper dance.
5/3/04
Today's official derm diagnosis: "Well, Mrs. Kuizema, why don't you come back in two weeks."
No biopsy.
I say, "stabilization period." (see below)
5/1/04
Happy May Day! I thought we should break out the streamers and fresh floral garlands, but Lawrence favoured sickles and red flags. So I baked a pie.
Had a nice time where we took the pie - up to Peekskill to our friends Kathy and Doug's place. It was Red Wings holy ground - which we loved! Can't believe they lost though. The boys watched all of the game while Kathy and I went and had manicures. And then of course, we all had to watch the Derby - what a mud field! But I love the Derby. We brought the dog, who loved playing with their most GE-OR- GEUS child. The eyelashes on this little girl - to die for! She loves the Red Wings (raising her right, they are) and kept calling, go horseys, go. Cute, cute, cute.
I haven't updated because there's been nothing to report. Still in that "stabilization period." I think "stabilization period" means they have no clue. I was quite upset to find out at yesterday's drs appt that my platelets dropped to 19. Inexplicable, of course. Dr. S is waiting until my liver function tests come back before he makes any kind of decision. It must have been that damn sip of margarita! (Just teasing MOM)
I have a dermatology appt again on Monday, where they will probably do another biopsy. Still have the unexplained rash and swollen feet. Man, they do get swollen too - like marshmallows on the end of chopsticks.
My short bus service has been on strike for the last two weeks. I think this rocks, because they send me around in Town Cars. I've gone from being a huge geek to living the life of luxury.
Lawrence and I went to the taping of Letterman yesterday, courtesy of our friend Elianna. It was a fun time. Hillary was the guest, so that's what got me to go. Still a big fan of those Clintons. We actually sat next to his/her media person. And we got to hang in the green room - good cookies in there.
My friend Dina, who has multiple myeloma, is beginning the second part of her transplant out in Seattle. Everyone think good thoughts for her.
So that is life at the Kuizemas. Plus, lots of crocheting.
4/21/04
Not much new to report. The biopsy results still aren't in. Feet are still swollen from steroids, so I am keeping them propped up as much as possible. My platelet count did hit 59 on Monday. This is cool. At my book club tonight, I might even have a sip of a margherita. 50 was the magic number to have alcohol, but I don't know, one sip will probably send me sailing!
4/17/04
Well, after a few more appts this week, and skin biopsy, they still don't know any more. Rash still popping up here and there. I will get the biopsy results next week. My feet are currently huge. I am retaining water big time for some unknown reason. I only have one pair of shoes and flip flops that will fit me. Thank goodness it is warming up. It is pretty hard for me to walk.
The good news though is that my platelets hit 50 all on their very own!!! No transfusions required to reach this number. I am eager to see my CBC results on Monday to see if they held. Ya know, 50 was the magic number for me to have a sip of wine, so I anticipating that. I am going to hold off until I get that second confirmation. One sip should send me sailing!
I am enjoying not having a catheter. It is very liberating just to be able to step into the shower without have to tape yourself all up. The downside is that I now need to have an IV place if I need any fluids. Hopefully that won't happen much.
4/12/04
Anyone looking for Meeeeeee? Well, I'm home now. We got home about 7:30 tonight. Still have no answers, but a lot more doctor visits scheduled. The sum of it I guess, is there is some kind of clotting thing going on. This makes absolutely NO sense to me since I hardly have platelets and that is what makes your blood clot. They ended up removing my broviac catheter and I don't know if I will be getting another catheter placed or not. I want an infusaport though if I do - this resides completely under the skin, so you don't have wires hanging out of your chest. So that is to be decided. I am still getting these shifting red, rashy patches, that get really hard and painful for a day or two, and then go away. No one seems to know what is causing this, but suspect clotting. I have another dermatologist consultation on Friday. They may do a biopsy then, don't know. No pneumonia. No other infections found and let me tell you, they ran just about every culture and scan they could think of. So basically I spent five days in the hospital and have no answers.
Being in the hospital really wasn't so bad though. It was a change of pace. Not as great as say Club Med, but a change. Lawrence hosted our third annual Easter dinner in the hospital yesterday. We dined on roasted lamb, potatoes, carrots and yummy candied yams. He even brought in the fine china! What a guy. I thank all my visitors, for well, visiting me. It was nice to see you.
So, now I will be back to my routine - hanging in the living room with the occasional visit to the doctors. Crocheting as usual. And, yes, the dog went nuts when I came home.
4/9/04
Quick update:
The catheter came out without any problems
Well,it's a clot, hidden behind my chest catheter. I am off to do the pulmunary test any minute, and am scheduled to have the catheter removed this afternoon. I am a bit nervous, as the last time I had a clot I ended up in the cardiac ICU with an aortic arythmia. Hopefully this will go better. Lawrence is leaving work to be with me this afternoon and I am grateful.
This may not be the total problem, but at least it's something to start with.
4/8/04
Finally got the computer up and running in my room. The keyboard is laid out differently than mine, and half the keys are broken,so I am having some trouble typing.
Well, no diagnosis yet. They did rule out pneumonia though, which is good. My extremeties are each taking a turn at swelling up. It started with my right calf,then left(still somewhat swollen) and now it looks like my left arm is joining in the party. I had a bunch of tests today: CAT scan, xray, a camera hose up my nose and then a biopsy of the sinsus, blood cultures,mucus tests. I was supposed to get a pulmonary function test, but they didn't get to me. So, as you can see, by the variety of tests, they have no idea what is wrong. But, there is something wrong.
I know I will be here at least through early next week. It will be my third Easter dinner in the hospital - it's beginning to become a tradition. I can think of better traditions though.
It's not so bad being here. I mean most days I just sit in my living room anyway. It's much more social here. Plus the craft lady came by and gave me three free skeins of yarn and a new hook - not bad.
Visitors are welcome if you don't have a cold. Also, no flowers.
I had a nice visit from my friend Melissa today.
4/7/04
Leslie checked in to her favorite suite today at NY Presbyterian/Cornell, with a river view. She was admitted for a possible respiratory infection, which could even be pneumonia. The symptoms are a little vague, and they plan to run a battery of tests; in any case, it will have been caught early, so we aren't getting too worried. The doctor's initial guesstimate was about a week stay, but again, we don't know much yet. Hey, the private room is a change of scenery, with nurses for some chit-chat. There's a DVD player in the room, and Leslie just received her initial shipment from a movie club. Might as well see the silver lining.
The phone number at the posh suite is 212.585.7128.
3/31/04
Oh, don't think I forget to tell our entire commmunity that it's your birthday. HAPPY, HAPPY BIRTHDAY HEATHER!!! I hope your day was wonderful and that you were treated like a princess.
Drs appt update: Up on the NPH insulin, up 5mg on the steroids, but whoa, lower the Potassium (yep, that last one is useless). Lost another 5 lbs, but I think what ever is left is moving to my cheeks and shoulders again. Yuck.
Joined a organic food co-op with neighbors. Hope that works out well. I am looking forward to all the fresh produce, even though I will still have to cook it. I am hoping that sometime this summer I can have a fresh salad!
3/27/04
Yesterday, I had the opportunity to meet the finest woman, whom I have "known" for about a year. Melissa found my website while looking for info on her husband's Jason disease - leukemia. For some unknown reason, she thought what I had to say was interesting, and sent me the loveliest of cards. We emailed back and forth, being able to discuss some things that only people going through the transplant process really understand. Unfortunately, Jason lost his battle last Fall. So, as part of her many recent travels across the world, she honored me with a visit when she came to NYC. I felt just like I was meeting a old friend - she was the nicest of nicest of people. I tried to give her taste of NYC, but only had 4 hours. We started with a light breakfast at the Algonquin, walked around midtown peeking at the sites on our way to Grand Central Terminal. Did the whole market thing and shops and headed to over to the Times Square area where we had lunch at Ruby Foo's. She was meeting up with other friends who were going to show her more. It was such a nice time - Melissa, thanks for including me on your itinerary.
In my photo album that I posted the other day with party pix, I want you all to pay special attention to the last picture. That is my sister Heather and I am purposely writing this, because she wants me to take it down. I think she looks beautiful.
3/26/04
Pictures. Pictures. Who wants
Party Pictures?
Today's drs appt went fine. Hold on the prednisone, up on the insulin. Got to get me some good ole' New York Hospital sushi for lunch though.
Happy Birthday John. Your present is here in case you choose to come get it.
3/23/04
So, I've never seen "Love Story" and no one would let me through this whole ordeal. Well, now I know why!!!! Holy crap. I happened upon it on cable this afternoon. The story is practically a parallel to ours (well, except Lawrence wasn't rich). They met in college. Struggled through grad school and first jobs. Finally, the cool place to live, some money and decided to start the whole baby thing. And then WHAMMO! She gets leukemia! It's even down to where her ob/gyn tells her! It's almost freaky. The one thing that is going to be different: I AM NOT GOING TO DIE.
Crocheting the day away as usual. Missing Heather already.
3/22/04
What a party! What a party!
Sorry in the delay in the update. As some have noted, I used a lot of spoons on Saturday, so I rested most of the day yesterday. All of my family departed, so it was really quiet here.
We had a wonderful turnout - at one point you could hardly move in the dining room and kitchen. Lawrence did fabulous job at meal planning (which involved a four hour trip to BJs!!) and my sister, Mom, and my dad's wife did a terrific job of helping putting it all together. Dad did a lot of decorating which made the place look cool. I had to take a nap before everyone arrived, so it was so cool to come to downstairs to Shamrock party central. It was awfully swell of NY hospital to do my transplant on St. Patricks Day so that I have a theme, wasn't it? And an unbelievable thanks to Lawrence's dad and his wife who drove all the way from Michigan just for the party and headed straight back again.
So many friends, coworkers, neighbors stopped by. It was so nice to see faces that I adore that I haven't been able to see in such a long while. As soon as I get to it, I will post photos.
Thank you so much to everyone who made my celebration special. ONE YEAR! Yowza.
One final note, the Kuizemas have officially been inducted into the geekdom hall of fame. You can reach all of our websites now at http://www.kuizema.com
3/17/04
Happy ReBirthday to Me! And Happy St. Patrick's Day to everyone else!
3/16/04
Would you look at that! The counter says 365 days today (what about the leap year?) Anyways - fantastic. It's morning here in NY and supposably we are to get a snow storm. Drinking coffee and sloshing (very technical term) after just finishing my bucket of pills and insulin shots. I usually slosh for about 45 minutes and then I feel much better.
Have my official one year check up tomorrow. Both Heather and Lawrence are coming. I predict a rise in insulin and steroids both. Let's hope I am wrong, but I am getting pretty good at these predictions. We are going to go out for lunch afterwards, and then off to Serendipity for frozen hot chocolates. Heather has never had one, and that is a sin. If I have enough energy and it's not too cold, we might peak at the parade - love those Irish dancers and bagpipes. You'd think I was really Irish.
3/11/04
Not much going on today. Made two toss pillows to switch out in living room when the weather warms. Putting some blanket binding on a fine piece of wool for a new bedroom blanket. Crocheting here and there. Well, maybe it is craft central here. Listening to the new Norah Jones. I am liking it. I am really liking Fountains of Wayne. Lawrence has that. The lyrics crack me up. Spotted a yellow crocus in our yard today. Spring can't be far.
I am feeling kinda jittery about my one year mark I guess. I wish I was all healthy, but know I should be happy that I am still here. So far I've been given 2 1/2 years I am pretty sure they didn't think I would have when I was first diagnosed. I am still slowly accepting that I will never have my old life back, no matter how bad I want it. And that this disease has eaten up plenty of my primetime. I feel badly that I have put my husband through all this and the rest of my family too. But, it has really made me realize how much I love and need them.
3/9/04
Let the games begin again! Yesterday the drs took away my evening dose of prednisone. It's only 5mg, but it's the start of the taper. We will do it even slower this time, especially towards the end. Hopefully this will be the taper that works. My face is moonpie again, I am brusing very easily, shaking uncontrolably, have blurry vision, achy legs and am tired - all the classic steroid symptoms. Can't wait to get rid of them again! And because we were so close last time, and I saw the changes, I actually believe that they will get better. I wasn't so sure before. It will just take time.
I can't wait for my sister, Heather, to arrive on Saturday. It's going to be so fun to spend time with her. I have some craft projects lined up and hopefully we'll make it into the city for a little fun. She really wants to see Regis, so I am working on that. She's such a good egg, I want to show her a great time. Her last visits were all about my cancer.
3/1/04
I wanted to share this story that was just shared with me:
http://www.butyoudontlooksick.com/spoons.htm
This is a very good explaination of how I feel a lot.