:: Leslie's Updates > Aug 2005 - Jan 2006: Fungal Infection to The End of the Journey
3/17/2006
Today would have been Leslie's third "re-birthday." I can't get past feeling that Leslie is still with us and will be returning home. I know that's not a completely uncommon feeling, but I believe it is bolstered by our relentless optimism that Leslie was going to get healthy. Her upbeat demeanor still delivers residuals.
Who can turn the world on with her smile... Leslie's former boss from CBS recently sent me an email:
I used to joke with Leslie all the time about her being our Mary Richards, the character Mary Tyler Moore played on her TV show that took place in a Minneapolis TV newsroom. Did you ever see the episode where her boss Lou told her she had spunk! Well, I sure miss that spunk around here. It will never be replaced.
The memorial services in New York and Michigan were testaments to Leslie's friendships. While I wouldn't measure a person's worth by the number attending her funeral, I have to say it felt wonderful to be overwhelmed by so many who cared. Her college sorority sister Beth designed a photo collage for the MI service. Memorial_Booklet.pdf
We are immeasurably grateful to all the health care professionals over the last four years who provided medical care with huge doses of humanity. Of course we went through some really tough times, but we were fortunate that we were able to share the extra years with Leslie.
Like a lot of events since the end of January, typing what will likely be the last entry on this page seems strange. I love her always. Please carry with you the memory of Leslie's strength and her smiling eyes.
2/7/06
Memorial services will be held in Michigan this Saturday, February 11.
2/1/06
We lost Leslie early Monday morning, January 30. She had shown grace through her four year battle against AML and the side-effects of the treatment. While we grieve for the loss of a wife, sister, daughter and friend, we want to celebrate Leslie's life. She often stated that she didn't want to be a model of inspiration; but many of us who knew her were indelibly marked by her optimism and fortitude. In the front of Leslie's planner, she had taped a fortune cookie quotation: "If you always give, you will always have." Leslie made it easy for others to support her with her sweetness and generosity, combined with a direct attitude.
Memorial services will be held in New York this weekend and in Michigan the following weekend.
1/27/06
Leslie had a few relatively good days. Sunday, the chest tube for draining fluid was pulled, providing a bit less discomfort. With assistance, she was able to get out of bed a few times and sit in a chair, once for a couple hours. Tuesday night she had an appetite, so we got one of her favorites: pork lo mein.
Wednesday, though, Leslie's blood pressure crashed. It was brought back up, but her medical team has decided that she has reached a point where there is no chance of recovery. For many reasons, her body has basically worn out. The doctors have expressed amazement that she has been strong enough to battle through all the complications over the last couple years. She has won many fans on the staff at the hospital. At this point, medicines are being discontinued other than antibiotics and comfort care. She is on a lot of morphine for pain and more relaxed breathing, so she is not aware of what is going on. We have all seen Leslie bounce back from so many adversities that it's hard to understand she will not come fighting back from this one. For over four years we have pushed forward with so much hope and confidence...
1/16/06
Friday was a good day. With a pair of assistants, Leslie made it to sit a chair for the first time since early December. But she just can't get a break. Saturday morning, her oxygen level was low and breathing was difficult; a CT scan showed fluid around her right lung, causing a partial collapse. A couple of attempts at draining the fluid provided relief, and she was breathing easier by evening. At least she didn't have to go down to the ICU. Like many of the problems lately, the doctors can't identify a cause. It may be related somehow to the intense pain she has had in that side of her chest for more than a week, but every test known to modern medicine couldn't determine the cause of that pain. Fortunately, it wasn't the pulmonary embolism that was first suspected. Leslie continues on heavy painkillers, a foggy head and lots of anxiety.
1/12/06
Leslie is still in the hospital. The ups and downs continue. Still very weak, and can't stand. We don't have any answers from the doctors.
12/27/05
Leslie was moved out of the ICU yesterday, returning to her 'normal' stem cell transplant ward. Our gratitude to all for the cheery wishes and prayers, especially during the holidays.
12/20/05
Leslie is now off the ventilator. She is still in the ICU, and we are not out of the woods, but it's a big step.
12/18/05
Leslie is in the ICU on a ventilator. There are several complications right now, including GVHD in the stomach, a clot in the upper chest that is extending, probable sepsis, and perhaps pneumonia, to name but a few. The photopheresis treatments had to be stopped over a week ago, and a new, alternative treatment was begun using infusions of Ontak. We would appreciate an extra dose of prayers or positive vibes right now.
12/1/05
Leslie is back in the hospital this week. Several things are going on: swelling in the face, neck and arms, difficulty breathing, nearly zero strength in her legs to stand up or walk, and the list goes on. It seems she hasn't disclosed on this page (shall we start calling it a blog?) that she has fallen several times in the last couple months.
The good news is that while she is in the hospital, the new photopheresis treatments will continue, since it's just over in another wing.
We had a few weeks of sequential visits from relatives, including Leslie's sister and stem-cell donor, Heather, and her husband, Marc, from Oregon. Everyone was tremendously helpful, which allowed Leslie some additional R&R. Thanksgiving was fun, filling, and most importantly, meaningful.
11/15/05
Still feeling very tired, but am making progress. I try to rest and get some exercise.
Good news! I am finally starting the photopheresis process. I get a CT chest scan on Thursday and get my chest catheter placed on Friday. My first photopheresis session starts the following Monday. I am very excited, and a little nervous.
It's been Grand Central Station of relatives the last couple of weeks. First Lawrence's father and his wife came, then his mother and her husband, a drop by my sister-in-law, and my sister and her husband arrive on Sunday with my dad and his wife coming for Thanksgiving, maybe my brother too. It's been/will be nice to see everyone! They have/will be so helpful.
11/07/05
I got out of the hospital over the weekend. Still taking antibiotics to finally clear up the pneumonia. The water has finally drained, I lost a total of 28 pounds of water. I have feet again. I am going to be taking everyone's advice this time. I am going to be hanging real low, resting a lot. I do not want to spend the holidays in the hospital.
10/11/05
Here are the Light the Night pictures.
As you can see, we had a lot of fun. Maybe you'll join us next year. Still don't have final numbers, as donations are still coming in, but it looks like we are at about $5,500. You can still help increase this amount until the end of the month - just in case it slipped your mind.
2005 Light The Night Donations
10/7/05
Light the Night Walk 2005 was a smashing success!!
We had about 20 walkers last night, and boy, was it a beautiful night. It was fantastic viewing from the bridge. Our team not only hit our goal of $5,000, but we surpassed it!! We are at about $5,400 and monies are still coming in. Yes, this means you can still make a donation. I am just so plum excited to have had such a success! Thank you to all the walkers and donators - you are just too terrific for words!!
I have pictures that I will put up as soon as I find the cable. It seems to have lost itself in the basement. Maybe tonight...
10/4/05
We have a new medical development. Kidney Stones! I have been experiencing excruciating pain in my pelvic area. My first thought was that I was starting to lose the right hip now. Great. Just what I want to deal with during the holidays. However, at my appt yesterday, Dr S said it seemed more like kidney stone symptoms. So, I had a pelvic xray yesterday and a pelvic CT today. I won't see that specialist until later this week or next week to see what his interpretation of the films are. I have to be in some strange place where I am actually rooting to have kidney stones, not a hip replacement. How on earth did I get to this place???
Any ways, my feet, legs and torso are still completely swelled up. We are onto another type of water pill. I think we will probably end up trying them all. However, if it is kidney stones, that could be the cause of the swelling and at least we will have figured out one problem.
SPECIAL MESSAGE FOR THE LIGHT THE NIGHT WALKERS:
Whoo Hoo! October 6th is upon us!
Meeting Location: In front of Ambercrombie and Fitch in the South Street Seaport Shopping area. There is a great big planter, look for me and the shamrock.
Meeting Time: 5:30 - 6:00 Please be on time as we have to turn in envelopes and get balloons, etc.
Please don't forget your collection envelopes. I will have extra with me though, so you can still drag along a friend. And if you forget your envelope, we can still turn the monies in late, but try not to do this. You will be getting your T-shirt and balloon at that time. You will also get a wristband which entitles you to all the free food, and there is tons. If you feel like it, wear a touch of the green. I will have party hats if you want to wear them and, of course, your goodie bags.
We are really close to meeting the team goal. Try to make a last minute push to get just a few more donations if you can.
Can't wait to see you all. It looks like we are going to have good weather and walk is just fabulous.
9/25/05
Had my multiple drs appts on Friday. The CT scan of my chest showed all clear and the pulmonary dr was way pleased. She scheduled another in two month's time. Dr. Schuster was also pleased to see the clear CT. This means the pneumonia has cleared up. I still have the possibility of having fungus hanging out, so I will be on the super strong anti-fungal med for at least a year. This should totally wipe out any signs of aspargillus. I am still a swollen freak though. They estimated that I am caring around about 15 lbs of water weight. Yikes. The thought now is that my blood pressure med is the cause. I guess long term use of Norvasc can do this. So they switched me to a new BP med. They also switched my diuretic too. It is very surprising that the super strength of Lasix I was on wasn't doing a dang thing. I just started these new meds yesterday, so it is too early to tell if they will take the swelling down. They also started me up on "N" insulin again, as my sugars were flying all over the place. I am getting a little nervous about this whole diabetes thing. They found a minute amount in my right eye. They said it is nothing to worry about right now, but it has gotten me freaked out. I don't want to go blind.
The Light the Night Walk is coming right up it seems. I need to know who is actually planning on WALKING. I need to make sure that you are registered right and that you know when and were to meet. This is a really big walk, so we need to be somewhat coordinated. Plus I need to know how many gift bags to make. Yep, that's right. If you actually WALK you get a gift bag filled with yummy goodness. Another incentive.... We are near 40% of our team's donation goal. I hope the walkers are collecting some funds on there own and that I might receive some more in the mail or online. This research is SOOOOOO important! Plus, the Leukemia and Lymphoma Society has been helping with all the critical patients who have been affected by the hurricanes. Getting them medicine and chemos - can you imagine being interrupted half way through your transplant by a hurricane?
Again, the donation site is: 2005 Light The Night Donations
Lawrence is in London for the weekend and Monday. I wish I could have gone with, but it is such a short and trip, and with my current health.... Anyways, he is enjoying his fresh pints and meat pies. I sent him off to buy me some lemon curd and bath foams from Lush - love those!
9/19/05
Happy birthday to me, happy birthday to me. I look like an elephant and my eye is still creepy. The swelling has decreased just only a bit and the feet are still getting huge with any movement. However, they are finally going down after a full night's rest. I don't know if I mentioned that I also have a hematoma in my right eye (a blood vessel burst). So it is BRIGHT red with blood making the green seem reptilian. I decided that I really didn't want to face the outside looking this way, so we ordered Chinese in with abandon! I ordered everything I felt like. We have a lot of leftovers!
Hmmm....what would make a fantastic birthday present for me?? Well, why not a donation to the Light the Night Walk or become an actual walker.
2005 Light The Night Donations
That would be so swell.
I don't see the drs until Friday, so I won't have any medical reports. The pulmonary drs want to see me on the same day for ANOTHER CT scan of my chest and check up. I guess I should just feel fortunate that they are still following my case closely and trying to make it all go away. Oxygen levels are still about the same. I can breath without any extra oxygen or tank, but I can get short of breath if I push myself just a little too hard. Doing better, not great, but better on the stairs. My sugar levels are going a tad bit nuts though. They don't want to self regulate. Insulin shots until that point, which are really no big deal for me to give to myself - just am lazy and don't feel like doing it.
Ta Ta
9/15/05
Had my first check up following my hospital release today. Blood counts seem strong and I am getting enough oxygen. The big thing, and I mean BIG, are my feet legs and torso. I am still retaining way too much water. I can hardly walk, and cannot walk at all without pain. I feel like one of those animated giants, like the Jack and the Bean Stalk giant. Fe Fi Fo Fum, here comes the elephanted footed one! They put me on a stronger diaeurtic, so hopefully this will help. Guess where I am spending a lot of time?
Lawrence gets back from Boston later tonight. I had so hoped to make the trip with him, but medically it just wasn't a good idea. So, I have spent these last few days alone doing a little cleaning up, watching movies and keeping these dang feet propped up.
Way to go gang! We are over the 25% mark on the Light the Night Goal. This is great news. I hope the momentum continues and we get closer - the walk is less than a month a way. One special thing, if not very sad to me personally, is that we will be walking in honor of my grandmother, Roxie, who passed away a few days ago. Instead of flowers, she wanted donations to be made to the walk. I feel very honored by her request.
9/11/05
I'M HOME!!!! I got home about 7:30 last night. I was so tired from just getting home that I crashed on the couch and slept through dinner. Moving around in the real world is tiring! And stairs - let me tell you, three weeks without using them makes them very hard to maneuver. I was using the stationary bike in my room the whole time and doing stretches, but I guess that wasn't enough and muscles started deteriorating already. So, today, I have been sitting on the couch alot resting, but doing things like sorting the mail and newspapers - boy did it pile up!
I am doing okay medically. I am still on tons of antibiotics and antifungals. They guess I'll be on the antifungals for at least a year just to make sure that there is nothing at all left. Aspergillus is dangerous. My oxygen intake is pretty good, almost normal, so I am not on any oxygen. I still very swollen from all the fluids, but am starting to depuff. A few more days and I may not look like the Stay Puff Marshmallow Man. I plan on just taking it easy, getting rest and straightening things out here for the next weeks. If you can believe it, I still haven't unpacked from our Michigan/Chicago trip because I went almost straight to the hospital from that. That is a big priority.
I will try to get to my emails tomorrow and start working on the Light the Night stuff again. Sorry if I have been incommunicado.
BTW, I am sparing you my 9/11 diatribe because I am just too tired.
9/6/05
Finally got my computer back over the weekend - but was too doped up to use it! Yes,I am still hanging out on 10West. I will probably be here for another week minimum. It turns out I have a fungal pneumonia, which, if it enters the brain, can be a very bad thing. So, I have given up on my INTENSE need to go home and just want to 100%
Doing lots crafting and I get a visit from Tango the health care dog today. Thursday is Milkshake Man and they are letting me take short wheelchair rides outdoors so I don't go completely stir crazy. Visitors are still welcome and yes, I still love peanut butter.
Now doesn't this long hospital stay that I have had touched your heart enough to give a donation to the Light the Night Walk? Please.
2005 Light The Night Donations
9/1/05
Leslie is still in the hospital, at least though the holiday weekend. :( Her computer was taken away for repair, so she isn't able to update the page herself. She's getting stir-crazy, to understate the situation, and really wants to get home. We think we may finally have a diagnosis -- a fungal infection -- but we are waiting for more test results.
8/27/05
The CT scan results came back showing the same if not just a bit worse results. This lead to a bronchostomy yesterday. This is where they send a scope into your lungs, take images and get fluid. The pulmonary dr said that the results are coming back negative (which is good). So there is still the big question of why I am not getting enough oxygen. My WBC counts are rising; they should as I've had tons of growth hormones which leave me VERY achy. So, here I sit and get more antibiotics.
I also just wanted to remind you all that if you are not comfortable donating to the Light the Night Walk online, you can send a check. Make it payable to the Leukemia and Lymphoma Society and send it to me (address above). Come one, come all. No amount is too big or too small.
8/25/05
Still in the hospital. Friday was the target release date, but now that is in question. My oxygen levels just don't want to improve. I go for another CT scan of my chest later today. So basically, I'm just hanging out and getting lots of antibiotics. Visitors are welcome.
It seems the Leukemia Lymphoma Society has improved it's online registration proccess for walkers. So give it a try.
2005 Light The Night Donations
Of course, the online donation area is still VERY easy. C'mon, do you think these fasinating updates come for free?? Help a very good cause.
8/22/05
Well,the exhaustion got the best of me. I started feeling really short of breath and by Friday a.m. I could hardly breath. I was told to go directly to the local ER (they wanted me to call 911, but I didn't want an ambulance pulling up, so I called car service instead). They assessed me there and then my drs at NYPH wanted me here, so I got transferred. An ambulance trip afterall! Still getting tests results back, but it looks like I got me some pneumonia. On IV and oral antibiotics, which seem to be clearing up the problem, but I'll probably be hanging on 10West until mid/late week.
On a more lighthearted note: Lawrence and I have discovered that registering online if you want to be a walker is kind of a challenge. So, if you want to walk, it might be best just to call the NYC chapter and do it over the phone.(212) 448-9206 Of course, it is really EASY to DONATE online. Skip the DQ this weekend and help give life.
8/16/05
Back from vacation and EXHAUSTED! Caught a bit of a cold too. We cut our vacation a day short and skipped Niagara - Lawrence made the medical call, but I agreed it was a good thing. Trying to get everything back in order, but because I'm so tired, it's slow going. The amount of mail we received in two weeks is amazing! We did enjoy our trip very much. It was great to see all our family and friends and chill out in the midwest.
Okay, I've got my Light the Night web page set up.
2005 Light The Night Donations
Please take a minute to visit it and also to DONATE! You can also sign up to walk from the web page or find out about a walk in your area if the Brooklyn Bridge is a bit far. My team name is very exciting once again: Leslie Kuizema's Team.
Trip pictures coming soon. Promise.
8/9/05
I apologize. I apologize. I KNOW I haven't updated in forever. I'm a dork. I had intentions of doing it just about everyday before we left for our whirlwind trip around the Midwest, but it just didn't seem to happen. So to those who have been calling or emailing, I am so sorry.
Okay, so what happened. Had my right eye cataract surgery scheduled for Monday morning. Was feeling a bit run down, so I laid low a few days beforehand and even skipped the BMT cruise (which I LOVE!!) so as not to expose myself to extra germs. The surgery went perfectly and I was feeling great Monday evening, talking on the couch with Lawrence. Just had my captivating pirate eye look going on. However, by the middle of the night, I wasn't feeling too hot. The big D made a return big time. By morning I was very nauseous and threw up right before the short bus picked me up for my post surgery follow up visit. During the ride I continued to worsen. I developed really bad chills, which usually is a precursor for a very high fever. By the time I got to the hospital I was near collapse. I could hardly walk, so I grabbed on of the wheelchairs that are always hanging around the entrance and wheeled myself up to my ophthalmologist. She took off the bandages, everything was great - it went absolutely perfect just like my left eye. However, she wanted to do a pressure test because sometimes the surgery can cause pressure that can create the nausea symptoms I was experiencing. Well, no pressure, but there was clearly something wrong with me. She called over to Dr. Schuster's office and asked if I should head there or to the ER. It was decided to go to Dr. S's office and one of her staff members actually wheeled me down there - that was extremely nice.
So when I arrived at Dr S's office they were like "we're admitting you through the clinic office." It was an attack of GVHD. They started up the saline and the many, many antibiotics. There were MANY, MANY, MANY blood draws, blood cultures, and IV punctures (my whole arms were black). However, I continued to spiral downwards. By midnight my blood pressure was dropping big time and they were afraid I was going septic. They moved me quite quick to the ICU. More saline, more antibiotics, more monitoring. Then it all started to kick in. Within 36 hours of my starting to feel gross, I was feeling completely well, just very tired. So this is Wednesday. They moved be back up to my usual haunt, 10West Transplant Unit, and I hung out there until the following Monday. I started getting REALLY bored because I was feeling so much better. However, I did miss those super humid days and got to hangout in air conditioning (trying to look for some small good side). They really don't know why it came on so fast or how I was starting to go septic. The bacteria got in my blood (septic), but from where is still unknown. At one point they thought I had developed a hole in one of my organs and were prepared to do surgery, but this was ruled out. I did end up leaving being on an additional steroid that just focuses on the gut area. These are my new favorite pills. Not because of what they do or anything, in fact I abhor the fact I am on an additional steroid, but because they are capsules with little capsules inside of them. It's like taking little maracas and they shake until about half way down. They're fun.
So that's the med story of the month for me. Then I spent a week resting and getting ready for the trip that I am still currently on. Lawrence has some business in Chicago, so we built a last minute Midwest vacation around it. We started in the Detroit area on Friday for a few days and got to spend lots of time with my Mom and her husband, as well as my stepmom Kate. We only got to see a few friends, but enjoyed the time we had with them. On the way to the west side of the state, we stopped in East Lansing to eat at El Azteco (a MSU tradition) with two of our friends that now teach at MSU. A quick stop a Lawrence's mom's to drop the dog and some stuff and off to Chicago for two days. His company is putting us up at the House of Blues Hotel. It's nice, but kinda funky. We got to visit with my aunt/uncles/counsins and eat Italian beefs. Back to the west side of Michigan Friday night after Lawrence got done with work and up first thing on Saturday morning to his family's lakeside cottage. We had a BLAST there this weekend. We boated, FISHED!, and ate way too much ice cream. We got to spend time with his brother/his wife/kids and well as his mom and stepfather. We also saw aunts/uncle/cousins/second cousins. It was a crowded house, but we loved it. I caught some keeper fish, but most were just throwbacks. I had forgotten how much I liked fishing. My family used to have a lake cottage when I was young and we fished, fished, fished. Headed home from there yesterday morning and had dinner with Lawrence's father and his wife in Grand Haven. Then off again to Chicago for two more days, which is where I am right now. Then we go back to the west side for the rest of the week and home through Niagara where we are going to stay the night and do the whole "Maiden of the Mist" thing - holy summer tourist batman! I am trying to stay rested, but it has been hard. I am mostly using the Chicago days as rest stops. I might head out and do a very cheesy tourist thing this afternoon - ride the trolley that heads around the loop and over to Navy Pier. Gag. However, it's just my speed today.
I think that is about everything right now. I am basically healthy. I can SEE out of both eyes. I am traveling just like I like to do. I have started to gear up my Light the Night drive, so don't be surprised if you hear from me on that from. And I promise that pictures will be forthcoming.