Day 17 Stem Cell Transplants nad the Stock Market

This is a picture of the metal tree sculpture that is on the escalator landing where we go to get Stan's bloodwork done . Some of you (or most of you) may wonder what stem cell transplants and the stock market have in common--well quite a bit actually.First, I am going to give you some stock market tips. BUY stock in HAND SANITIZER (like Purell) and also ALCOHOL PREPS--why, because Stan and I use so many everyday--and there are thousnads of people like us, so the demand for these products will continue to be great. Also, BUY stock in CLAIROL--why,because with all the stress here ,it will take vast amounts of Clairol to get rid of all my grey hair.
Like playing the stock market,getting a stem cell transplant is a risky, roller coaster business. You do your research, find a good investor/doctor,dedicate time and money and hope in your investment, follow the progress,try do to everything right, and hope for the best. Unfortunately,like the stock market, your company can crash with no warning (as any one can get Graft versus Host disease on day 99).So ,we hope we will keep our "upward trend" in Stan's health.
Today, his numbers still look good. The Doctors are watching his creatinine serum count (not an emergency) his counts are still in the normal range,but because Stan is on so many medications,they like the count to be low-normal---to make sure there is no damage to his kidneys. Good news--Stan is now off of the steroids and the extra antibiotic. His glucose levels have been good and we are hoping that we will only have to continue to monitor them for another week. We are anticipating getting a day "off" next Thursday--we will administer his treatment in the apartment and will not have to make the trip to the hospital.
Our next "big mile-marker" is on Day 30,which is September 13th. On that day, Stan has another bone marrow biopsy to see how many of the donor;s cells are in his marrow compared to how many of Stan's cells are still there. We are rooting for the donor!!!!
So, we hope you all have a great Labor Day Weekend.
We love you and miss you all,
Leslie and Stan

Day 16 counts and pictures O' the day

Today's pictures are taken at our new "daily assignment" ,the ATC. The first is a view of the park below Stan's treatment room,the 2nd is a picture of one of the treatment rooms. The third picture was taken from Stan's treatment room and is a view of the skybridge going to the Mays Clinic (on the right) and the Rotary House Hotel (that is attached to the hospital).Lastly, is a view from the same window looking in the other direction--every building you see is part of the Texas Medical Center (part is MD Anderson, part is Children's Hospital, part Methodist Hospital, part St. Luke's Hospital,and several others)
As far as Stan's counts --his platelets and white blood cells are in the NORMAL range,red blood cells are up a little from yesterday (the doctors told us today that the red blood cells may not get back to normal range for months,so not to worry. Potassium was a little low today--but all he needs is a pill for today to counteract that.
So, we were told that we are "nice and boring" and at this point ,that is the best we can be!!! yipee!

Day 15--the next phase

We now begin the "outpatient phase " of Stan's transplant. While it is great that he does not have to "stay" in the hospital--we are still here at the hospital for hours everyday. (and, for me ,it is very scary, that I am really in charge of all his meds and insulin shots and meals and exercise and Dr appointments and keeping his CVC clean and laundry etc.,etc.,etc,.!!!)
His blood counts continue to look a little better each day. Today he is receiving an IV bag of magnesium (his body looses alot of magnesium because of the drug Tacrolemus (which helps his body not to reject the new cells) and he is also getting an anti-fungal drug to make sure his CVC does not get infected--we will be here for about 3-6 hours today. Also, we will meet with his "team" which consists of a DR (Dr Kourhi) and his physicians assistant and a pharmacist. Later this week he will get IV-IGG to boost his immune system. We are also told that next week he will begin physical therapy to begin to build up his body slowly.
The outpatient clinic is on the 10th floor of the main building and is quite nice. They have a little coffee/tea area and there are juices and snacks available at the nurses' station for the patients. The food service also comes around for patient's lunch and dinner orders (which are free for the patients) (I will post some pictures tomorrow)
While here today--we had a magnificent view of a thunder and lightning storm going through Houston.
Talk to y'all tomorrow!

Day 14 "Stan is in the house" (actually in the apartment

We were told at 11am that Stan would be discharged from the hospital today--and exactly 6HOURS later--we were finally on our way to the apartment.We got in just in time to miss the thunderstorms and flash floods on the roadways.
The Doctors are guardedly optimistic--they say "at this time--allthings look good". We now need to do everything in our power to keep Stan from getting any infections. We were told that approximately 50% of all Stem cell transplant patients get Graft versus Host disease. So far ,Stan has had no symptoms (but he is still on steroids and antibiotics). We had to pick up 18 bottles of medicine from the pharmacy before we left the hospital--you can imagine how trying it is to make sure Stan gets all the right meds at the right time (and we are still testing his blood glucose 4X per day and giving insulin as needed.)
We also found out today that I will be learning togive Stan his IV meds in a few weeks (yipeee)(I do not know why they are mistaking me for a nurse-type person!)
For tomorrow,we have to be back at the hospital early for Stan to give a blood sample and the he will be in th ATC (ambulatory treatment center) for 4-6 hours having infusions of magnesium and IV-IGG and any other fluids he may need. This will be our schedule for the next two weeks. If he is doing well, we may get a weekend off in September.
Stan wants to thank EVERYONE for all your prayers, good thoughts, calls, emails and cards--they mean so much. This is much harder than we can explain and you are all making it possible to give Stan another chance at life.
He also continues to lose clumps of hair at a time. I offered to pull out strategic clumps to make a design on his head. Soon he will be shiny and bald--his suggestion is that maybe he could sell advertising space on his new glossy finish head. Any takers?!?!
Until tomorrow--we love you all!

Leslie and Stan

Day 13---Stan is getting "sprung" tomorrow

Day13 Here is Stan saying"good-bye to his companion.
'the pole" Today the doctors came in and said that Stan would be released from the hospital TOMORROW!!!! (which is a week earlier than we expected). All his counts are going in the right direction--the extra fluid is coming off,he is on all meds by mouth and has not had a headache in 24 hours. We still do have a few things to do before he gets to leave. Today we watched videos about diabetes and we will be having a class this afternoon about his diet and how to use the monitor for his blood glucose levels and how to give insulin shots. (hopefully the diabetes will go away once he is off the steroids---they are aiming for Friday for all steroids to be done). Also, he has to have his 3 prong port (CVC) exchanged for a 2 prong port. We also have to get prescriptions and all the meds and supplies that Stan will need (quite a list!) He also has to get rid of his "pole".

SOOOOO-as of TUESDAY,AUGUST 28th--do not call the hospital room number------
use the apartment # 713-667-1308
or
my cell # 518-339-3295

On a final note for today---NOW Stan is loosing his hair---new pictures to follow tomorrow!

Day 12 Numbers

I have never paid a lot of notice to how much we use numbers in our lives. This trip to Texas has opened my eyes.
Before we left home,we needed dates and times to leave--all numbers. We had our flight number and gate number,our arrival time.
Once in Texas,we had to learn our building number ,our apartment number,our new phone number,our address and new zip code number. Then,I had to remember Stan;s floor number and room number and his phone number.
Since his transplant,we are watching all his blood count numbers,and his input and output numbers, his medicine dosage numbers and now with the drug-induced diabetes--his glucose numbers.
Stan's white blood counts is now in the normal range nad his red blood cells and platelets are increasing everyday.We are possibly looking at a discharge day of Wednesday----if "all the numbers look good".

Day 11 a better outlook

Some good news--Stan's doctors were in this am and his white blood cell count is in the NORMAL RANGE!!! other counts are coming along,slowly,but surely. On Monday,(if we can resolve a couple of issues that I will explain soon)Stan will begin "transitioning" from IV meds to medicines by mouth in anticipation of being discharged from the hospital sometime next week. He did have some problems this morning with shortness of breath--the doctors jumped on it--did an EKG and chest xray--both looked good--the problem seems to be that Stan is retaining too much fluid and that is causing the breathing problems. He is on lasix here (IV) ,but we need to resolve this before he can be discharged. Another good development--he is off the oxygen--his count is 94-96 on his own. Also, he did not need any insulin this morning--another good thing.
So, we are hopeful today. Stan (of course) is looking forward to getting out of the hospital (although we will becoming in to the APC (ambulatory patient clinic) everyday for at least 2 weeks),but we are moving in the right direction.
On a different note--I know some people have been complaining about the oppressive het at home--today,in Houston--it was 87 at 8am and is expected to reach 96 by afternoon--the humidity is also 90%--so with the heat index--it feels like 104! Sooooo---I am giving you all permission to remind me of this when I am get home and am complaining of the cold in December!

Day 10 mixed messages

Friday, Stan is better today than he has been in the past two days. He has had some complications that are medicine induced. He has something called engraftment syndrome (ES) .This is unusual in allo transplants,but is brought on by the drug neupigon (that is used to stimulate cell growth. One of the worries with ES is pullmanary edema---Stan had a chest exray last night and there was evidence of a little fluid around the lungs. The best treatment for ES and its complications is to receive steroids, lasix, and intravenous antibiotics and to be on oxygen--which Stan began last night. HE is feeling better today, but one of the side effects of this treatment is to develop temporary diabetes-----so,now Stan is also getting insulin shots.
His white blood counts and platelet counts are still coming up slowly,his red blood count and hemoglobin have not changed.
So----all in all I guess things are better,but man oh man is this an anxiety producing 3 days!!!!

Day 9 A difficult day

.Today has been another roller coaster day. Stan was very sick this am with a migraine headache and vomitting. He got some meds,but they made him extremely confused ,tired, and unintelligible. He also seems to be retaining a lot of fluid, so more lasiks were given (which work, but allow him no rest for running to the bathroom every 1/2 hour). His oxygen levels have been low all day, so they are taking him for a chest xray tonight and giving him another antibiotic to make sure no pneumonia sets in. His white count was up again today which we thought was a good sign, but now they say he may have something called"engraftment syndrome" He will get some steroids to help that---unfortunately the side effects of this steroid are feeling more anxious,more emotional ,and less able to sleep---all 3 things that he doesn't need!!!!
So we wait for all the meds to do their work and hope for better newa and a better day tomorrow. These are the times I miss home the most----just waiting for what will happen next.

Day 8-not so great

It is only noon, and today has already been difficult. Stan is experiencing quite a bit of pain---muscle spasms in his spine and what seems even more upsetting to him ,is that he is confused. Some of his blood counts have come up just a little and the Doctors say that the pain is often indicative of the new cells working and that this is a good sign. (from my point of view--it is very hard to see my husband in any pain). The other good news is that because there has been this slight increase in platelets,red blood cells and white blood cells, they have taken him off his neupigen(sp?) shots (which were to stimulate new cell growth). He is resting now---hopefully he'll be in less pain when he awakens.

Day 7

Day 7 ,Stan is still doing well,(although if you have read his blog or talked to him on the phone--you know that he is a bit befuddled at times). Today he has gotten a bag of platelets and he will be getting a bag of red blood cells this afternoon (which they say is not unexpected).We took a short walk this morning and will walk again later today.So, we are still pleased with his progress.
Today's pictures I am titling "around the town". The first is one that Stan wanted me to put on--it is the view from his window.
The second picture is of a "bayou" (I know--to us northerners--it looks like a water ditch) but the reason I took a picture is so you can imagine how MUCH rain there was last week. The rain filled the bayou and was all the way up the grassy sides and STILL 2 to 4 feet of water covering the roads! That is a lot of water ! And although I feel terrible about Mexico--I am very glad that we will not be seeing Hurricane Dean!
The third picture is one of the Children's Hospital transport vans. They take children and their families to any of the nearby cancer centers. The neat thing is that they are all decorated with art by local children--so the buses are very colorful!
The last picture (is not very good) shows one of the Metro buses (you can sort of see it attached to the cable at the top) these travel around the Medical center and to downtown Houston.
So for today---I will sign off----Tomorrow morning,I am going grocery shopping with the wife of another transplant patient who we met on the shuttle and who we continue to see as we walk here on the floor. Joan--has a car here in Texas (although she uses the shuttle to get back and forth from the hospital because the cost of and parking availability are prohibitive),. I will pick up some more food,but also I need to begin to get some of the cleaning supplies I will need when Stan comes to the apartment----in other words--since I don't have to walk--I am going to buy the heavy stuff tomorrow!
OH--and Happy Birthday to my brother tomorrow!!!!

TIME IS ON MY SIDE

When we started this blog, I wanted it to be a source of conversation and information respecting stem cell transplants (SCT) and my walk of faith. However, I think it has taken on a life of its own perhaps fueled by some of my recent postings. This leads me to explain what has been going on with me. I have an attention spanned of two minutes. It seems that in the middle of the night I wake-up and go to the bathroom to, I will not say the p__ word, I'll just refer to it as the P word. I get back in bed and fall to sleep for what seems comparable to 60-90 minutes, only to find that I have actually sleep for just 2 minutes. So all of my night-time posts should be discounted for lack of a restful based experience. Consequently, I'm sleep deprived during the daytime and those post are questionable as well. Bumber!! Perhaps this is a cute way of saying, I am having some sleep and fatigue issues. The SCT docs have reduced the dosage of several meds and added a sleeping pill at night. We'll see how much this helps the situation. I hope I don't fall asleep on my way to or in the bathroom.

I have been contemplating a post on "timing". You know the phase, "timing is everything". There are several things going on in my mind and perhaps in reality too that lend themselves to such a discussion. It's late and I need to go to bed. If this is still posted when I awake, then I really wrote it. If not, it was just another one of those two minute dreams.

Stan

Day 6 pictures of Stan

Hi all, I thought everyone would want to see how well Stan looks 6 days after his transplant. First picture, he is standing in his room, next picture: he is with his constant companion--the IV pole. Then you see him all suited up outside his room getting ready for our walk. And 4th picture he is with 2 of the great staff who work here at MD Anderson. The nurses, aides, cleaning and food staff get moved to a different one of the four pods everyday, but they ask about you and encourage you as you walk around everyday and remember our names!!!
I just wanted all of our friends and family to see that Stan is ALIVE and WELL !

Day 6

Here are some pictures of MDAnderson. The first is (obviously) the fountain at the entrance of the hospital. The second is a view of the main hospital. Stan's room is on the far left of the building on the 11th floor.




Here is a picture of the "Sky Bridge" that connects the main hospital and the Mays Clinic (where many of the tests take place) There is a view form the outside and inside the bridge. They also have golf carts to take patients across the bridge.
The last picture is a "Tree Sculpture" one of the items that MD Anderson uses to identify different parts of the building.
Today is day 6. Stan's blood count continues to plummet (as expected) He does seem to have a little more energy today! We walked this morning and he is still awake ( since 8am) (it is now 1:30pm). One of the other transplant patients that we see when we walk (Fred) told us today that he may be going home soon and he is at Day 13--so we are hopeful that if Stan's blood counts begin to go up--and he continues to do as well as he has been--that he may get out of the hospital sooner than 3 weeks (and ultimately get home sooner than 100 days!!!!) We can only take it one day at a time ! We have met some very nice people as we walk who are also here for a transplant. Since everyone wears masks and gloves (and sometimes gowns) as we walk--you can only see peoples' eyes and can't tell if they are smiling or not, but we all say "Hello", ask how people are feeling each day, and congratulate each person for walking! (5 times around all 4 pods on the 11th floor is 1 mile) Right now every room on the floor is occupied (that means 52 people are somewhere in the process of a bone marrow transplant ) and there are 26 more rooms upstairs for those patients who need an even more sterile environment. This truly is an amazing place!!! So, until tomorrow--have a good day!

Day 5--Sunday

Since today is Sunday, here are some pictures for Joe (who we have spent dining with on numerous Sunday mornings). Joe, Stan took these first two pictures just for you!!! These were all taken at a little boardwalk village on the Galveston Bay, called Kemah. Also, Frank and Louise, your boat would have been right in place here too! We walked up and down the boardwalk 2 days before Stan went into the hospital. And we ate at a boardwalk restaurant--it was very nice. They also have rides and the usual boardwalk games and a large marina (pictures to follow on another day).
Stan continues to be okay--mornings seem toughest for him--he does not sleep well at night, so he is EXTREMELY tired in the morning and often goes back to bed after he eats breakfast. He does much better in late afternoon and evening--that is when we/he walks and when phone calls are much appreciated. I usually stay at the hospital until the last shuttle back to the apartment at 7:30pm.
We have been watching the weather channel and it looks (now) that Hurricane Dean will hit further south than Houston--thank goodness!(but we will continue to follow its path.)

Saturday--Day 4--still good!

This picture is for Nobe--she loves Target--down here she could one-stop shopping--food,housewares and (of course) bathing suits--all in one store.
Stan is still doing quite well--his blood counts are all very low (which is to be expected) he is doing everything right (no pun intended)---walking, showering with the special anti-bacterial soap,rinsing his mouth frequently with special mouth-wash,using the gadget to keep his lungs working well, and eating well.The only thing the Docs are looking at right now is an irritated spot on his stomach where he received an injection of meds to increase his production of neutrophylls (sp?). Since the first shot, though , he is now getting the same injection in his arm with no side effects--so that is good. This week (on Tuesday) begins his 3rd week in the hospital.Hopefully we will see an increase in blood parts by the end of the week.
At te apartment, I have had a little excitement,yesterday (Sat) I had no water for 8 hours and when it did come back--it was brown. So, last night I boiled water and put it in any container I could find so I would have water to use. (because of the possibility of Hurricane Dean coming--it is hard to find water to buy) So, for now at least ,I am, set and today I have clear and plentiful water in the bathroom, but just trickle of water in the kitchen and no hot water in the kitchen. I'll bet this will be al better by Monday.

apartment pictures

Here are some more pictures of our apartment complex. This top picture is the view of the pool from our window(there are 5 pools in the whole complex). The 2nd is the apartment office. Third is the walkway to our apartment and the last is the road that enters our complex. As you can see, the roads are either pebbled or brick as are the walkways. They do a very nice job of keeping up all the landscaping. Also, as you can see, each apartment building is 3 stories tall.
There are elevators in each building,but ours is not near our apartment,so I tend to use the stairs (I am only up one flight).Each building has a small laundry room on the first floor as well. (4 washers and 6 dryers). So,for now, hope y'all have a great weekend!

Day 3--Still doing well

Here are some pictures of a great Bar-B-Que restaurant we ate at before Stan went into the hospital. It is called Goode Co. and it has incredibly "good" food. The middle picture is the counter where you order your food--things like pulled pork,jambalaya,cornbread, spoon bread ,BBQbeef briscuit, okra,pecan pie,etc. There is also an old soda chest from which you pick out you bottle of soda or beer. The first picture got a little cut off, but you can sort of see the buffalo head (yes--a REAL One) over the juke box. And the 3rd picture is of the armadillo that decorates the outside seating. On Friday and Saturday nights,they have a band and people dance under the awning.We had a great meal here, but Stan will not be able to eat this kind of prepared food for quite some time again. He can only have food I prepare for him,or individually packaged microwave meals. (I guess it is a good thing that he likes my cooking!)
On DAY 3, Stan is doing still quite well---he says he feels "stoned" quite a bit of the time because of all his meds--but the Drs and nurses seem pleased with him so far. We are told that those patients who walk do well and those that don't walk have the hardest time. We have to schedule Stan's walking when I am at the hospital or when he does not feel "stoned"--(falling could be fatal). So, we certainly hope that he continues to progress this way---we will be watching next week very closely for signs(bad signs) of Graft versus Host disease or signs (good signs) that his blood counts are coming back .

Day 2 =Wet

Yesterday (Thursday), Houston was visited by "Tropical Depression Erin". We had 5-10 inches of rain and if you saw any of the images on TV--the water was up to car doors and to car rooftops in some cases. Some of the worst roads were those around the Medical Center. Needless to say, the shuttles from the apartment were not running (or if they did try to go--they were stopped in traffic for HOURS) ---so I did not get to the hospital on Thursday. I talked to Stan off and on throughout the day and he was doing quite well. Our apartment is on the second floor, so the rain did not really bother me, but there was an inch of rain in the entryway to the stairwell I use.
If Houston was under water and pretty much at a standstill because of a Tropical Depression, I cannot imagine what things will be like here next week when we are expecting Hurricane Dean to hit. The forecasters say it should hit American soil by Wednesday, but it is still a ways off and its course may change by Wednesday. In the meantime--I will get some bottled water and a flashlight and batteries--just in case---who ever thought a hurricane would be part of this adventure!!! (as if we did not have enough excitement already!!)

Preparing for the Big Dance (continued)

Well folks, the Big Dance has officially come and gone. It took all of 2 hours, including the prep. If you don't believe me, check out the picture Leslie posted earlier today. Speaking of which, I received a call from church member Donna this evening telling me that picture was truly ugly and in fact she said I was ugly- huge round head and no hair. She was laughing but stopped long enough to make a comparison by saying I was uglier than she was, when she was undergoing chemo for her cancer and lost all of her hair. I'm lost for words!

In any event, this wasn't "The Big Dance". It was one dance of many more to come related to "stan and leslies texas adventure". I had a good talk with my nurse today about what can we expect next and it all revolved around stopping infections- fungal, bacterial, & viral. So we have been preparing for that since last week and that work continues today with new IV treatments and a new batch of "oral medicines", we use to call them pills. The other little dance that has to occur is my new stem cells have to find nice places to live in my bone marrow in order for them to reproduce and eventually kill any cell they determine is foreign. It seems so simple but of course, as most things in life, it isn't. We'll take life one day at a time and see where we are tomorrow.

On a lighter side, I may hold another record aside from being the ugliest. It seems the first 3-4 days as an in-patient, I gained 19 lbs. all liquid of course. Well finally the powers to be decided I need to shed (perhaps in the term watershed comes to mind) some of the liquid. Yep, I got Lasix and they got yellow liquid gold, 5 liters worth overnight. One nurse heard of my feat and said that he was told I gave back 10 liters that night. In any event, beat that Donna!

More dances to come. I pray we will be prepared. Keep asking the Lord to prepare Leslie & I for whatever dance is next in this big adventure. I feel so lifted up, not by any good deeds of mine, but by all of your prayers. Asking the Lord God Almighty to watch over us. Leslie & I are truly blessed and highly honored.

Stan

our apartment

Here is our "Home Sweet Home" for the next 4 months.--all 520 square feet!!! How ironic that Stan and I are living in a small apartment with donated furnishings and our son is living in our house and our daughter is living in a new house. They have easy access to a washer and dryer and now I have to haul all our laundry to a laundry room (and hope there is a machine available).Josh and Noelle have cars to get them where they need to go---I am negotiating the bus/shuttle/UT police/taxi system and walking. We are very lucky that we have a furnished apartment--a funny thing though---there were only 2 coffee mugs in the cupboard---at home, we use more coffee mugs everyday, than any other dish.(I did buy 2 more!) It is also very different to get used to sounds in an apartment---water running, vacuum cleaners going, doors opening and closing that have nothing to do with you.Smells are also very evident in the hallways and an skew your ideas of what you want to eat (or what you don't want to eat) You cannot just "run out" to get your mail or put in a load of wash or pick up a few things at the store----you have to plan more---well it is an adjustment,but I'll get used to it I am sure.

DAY 1

Finally Day 1 has arrived! Here is a picture of Stan as he is receiving the stem cell transplant. Nurse Joyce is checking to make sure every last drop is going into Stan. He is still feeling well today. He now receives medication that is an anti-rejection drug and a drug called Rituxin that is kind of chemo that will try to eliminate any leftover CLL cells that are in Stan (although after all his pre-treatment--I can't imagine that he has anything left!). He will get the anti rejection drug for a while now and will get IV-IGG (once a week) which will help to temporarily boost his immune system until the new stem cells take over and begin to work. He is about to take a shower and then we will walk before he gets his next drug.

TRANSPLANT IS A GO!!!!!!

At 9pm Texas time, Stan started receiving his first bag of stem cells!! He is getting the second bag as I type. All is going well-- all his vital signs are good. He will now be O positive bloodtype and hopefully his spirits will be positive as well! Some people here say that the day you get your stem cells is your second birthday---Stan is campaigning for TWO parties and more presents ! We'll see how good a patient he is for the next 100 days.
He should feel okay for about a week to ten days, then we have to watch for host versus graft disease and we watch to see if these new cells are making all the new red blood, white blood, platelets, etc. that Stan needs.
But for now--we are very happy!

one picture

it has taken me ALL day and my son's help to post this ONE picture of the little store in our apt complex---I'll keep trying

pictures

The Big day

I am writing now because everyone knows that today should be the day for Stan's transplant. He is extremely tired and is scheduled for radiation at 2pm and the stem cells are expected to arrive around 8pm. We are hopeful that they will do the transplant tonight,I will try to update the blog before I go back to the apt tonight.
Leslie

laptop arrived just in time

Monday the HOT weather (102) and our laptop arrived just in time for "the big day" tomorrow. Stan has had some ups and downs lately---nausea,etc. but we are still set to go for the transplant tomorrow.We heard that he gets his radiation at 2pm so the transplant will be after that--but may end up taking place on Wednesday if the stem cells arrive too late. We are relly looking forward to beginning our 100 days. It took a long time today to get access to the internet at the hospital (no internet at the apt) so I have not figured out how to put pictures on yet hopefully tomorrow!
The heat index for today is at 110 and the same is forecst for tomorrow---we should have a " break" in the heat on Thursday---only 96!!!!!!
Until tomorrow!

Preparing for the Big Dance

Well friends, after more than an hour of pecking away at the keyboard demonstrating what a great theme, "Preparing for the Big Dance" is, I went to edit it and regardless of saving it 14,000 times, I lost the text. Gone! I hope I do better on Tuesday. I'm dog tired & need sleep. Writing about "Preparing for the Big Dance" will have to wait. In the face of this frustration and fatigue, I still say, "Praise The Lord". I am truly blessed an highly favored.

Leslie's Catch up blog

Hi y'all,
I have not had access to a computer for a few days , so I thought I would try to review some of our "experiences" sine my last entry on sunday.
WEATHER--let me start with this Houston weatjher. The temperature has been (and is expected to stay) in the high 90's and when you factor in thr heat index--it feels like 117!!!!!
Given that--let me tell you about Monday's trip to NASA Johnson space Center. We had an exciting, fun, educational,inspiring 6 hour tour---NOT!!!!!!!
We waited outside for an hour to get on an open air tram ride that was 1 and 1/2 hours in the sun. When we did go into a building it was "87 stairs to"-"-27 stairs to". Stan really did enjoy this.We DID get to be in the exact "Comtrol room" where they are currently monitoring the space shuttle that took off yesterday. We also saw a full scale mock up of a space shuttle----it was (as Fucillo would say)HUGE , at least as big as a football field.(on a side note--the living quarters for the astronauts in space is BIGGER than our apartment.Stan was also excited to try "dippin'dots" for the first time. We got to touch moon rocks and Stan got to touch parts of space ships that had been to outer space and back.
Tuesday----Stan was admitted to the hospital as an in-patient for the next 4 weeks. He had some bloodwork and vitals signs taken in the morning and then went to have his hair shaved. I saved some hair in a baggie. His head, I think feels like Velcro and , in fact, his T shirt got stuck on it when he tried to take his shirt off.
We (he) had been warned that the nurses in the transplant pod did not have a great sense of humor and that he needed to behave himself--I was immediately worried!!!!! Luckily, so far , all his nurses have a good sense of humor and they have said he is a "5 star" patient. So far he has done very well with all the Chemo treatments (I hope this is the way it will be for the next 4 months.)
I was able to pass the "dressing Change" demo, so that will be helpful when Stan gets out of the hospital since I can change his CVC dressing at the apt. if it gets wet or dirty and we won't have to make an extra trip to the hospital for that. ( I am SOOOOO NOT a nursing person though)
Most of Stan's day is spent hooked up to an IV pole with his chemotherapy treatment and he drifts in and out of sleep- when he is awake, he is to do breathing exercises and walk (this is called "roll the pole" in transplant pod slang because patients are hooked up to an IV pole the ENTIRE time they are in the hospital)-I am getting alot of reading done during this time. Also, MDAnderson volunteers pass out little crafts to patients and family to pass the time---little needlepoint magnets or coasters to sew on plastic canvas--I am telling you all this so you will understand when you ALL get these items for Christmas presents!!!! (LOL)
SO, Stan has 2 more days of chemo, he rests on Sunday and Monday, gets radiation Tuesday am and then the actual transplant on Tuesday as well. Then we can start "counting the days"--we really want to be "outta here" by the 100th day!
Just a reminder--Stan CANNOT receive any flowers--he would love to get cards that we can use to decorate his room (room # G1154)
He has a phone in his room too (713)834-9178.
I am hopeful that our laptop will be here by Monday--so keep those emails coming---that is a GREAT way to support both of us. Thank you to all of our friends and family who are supporting us with your good wishes and prayers! We REALLY appreciate it.
Love,
Leslie

My bed is alive!

Day two in the hospital was a breeze except trying to type while wearing latex gloves. I had the largest bag of Rituxan I have ever seen. The IV took over 8 hours to complete albeit the valves were slowly opened more as the day progressed. No fast feed - no reaction! I ate very well. The food here is like that of a 4 star hotel. I walked around the entire 11th floor and got lost. I took a call from Harry too early this morning. Remember, 10am in Albany is 9am in Houston. This place lets its patients sleep in the morning. I took at call from Lester in the evening- a good time to call. Frankly, any call to me, regardless of the hour is a welcomed call to me. Just couldn't pass-up an opportunity to bust on Harry. The best part of my day was having Leslie here with me. It feels very similar to when we were dating, seeing her walk so confidently and bubbley into the room. Yet, in all of this sense of newness and wonder, she is my rock and strength. I hope you understand my point?

So I was thinking of a theme for this posting and all I could think of was, how after checking in last night, my bed felt as if it were alive. My bed is alive, what is that all about? I know some of the gang back home will have fun with the phase. But, my bed is alive! Every time I move or shift my weight, the thing makes a noise, sounds as if it is breathing- it shifts with me and adds support beneath me where needed. This reminds me of my friends or I should say our friends and family who are there supporting us when things move and shift on us, way down here in Texas. So here is to all of our friends and family out their- THANK YOU SO VERY MUCH for being like my bed. Hey, if you read yesterday's blog then you also know what I am saying and where all of our thanks and praise should go- I am blessed and feel very favored. My bed is alive. Praise the Lord!

Off to the shower and good night,

Stan

Day One In The Hospital & Phase Two Begins

The day started off like most days but we knew it would be different. Les would be going back to the apartment later this night alone as I began my one month journey in the hospital. It was a tearful good night.

I met an interesting young lady who was about to draw some blood from me this morning. She ask me the perfunctory ,"how yall doing this morning?" I replied with my common, "fine" & followed by asking her how she was. She replied, "I feel blessed and highly favored". She caught me off guard, "blessed & highly favored". How did I really feel? I asked myself that question all day long.

Barry Bonds must be feeling very good this evening. He finally hit home run number 756 to pass the great Hank Aaron. Yep, I'd say Barry feels pretty good this evening. Blessed & highly favored, perhaps. How about the young guy who ended up with Barry's home run ball? I looked on the Internet for his name but couldn't find it. I'm real sure he feels blessed and highly favored, not to mention, bruised. Today we met a nice young lady named Tasha. I can't remember how she was feeling but she seemed very happy. She smiled and laughed as she shaved my head. At that time I surely did not feel blessed or favored. I felt like I was forced to join a club to which I didn't want to belong; bald headed, unattractive, fat, cancer persons club. Angry not blessed or favored!

Les & I hit the wall. It was no longer tomorrow or next week that I'd be entering the hospital, it was now, we got the call. "please arrive by 6:30 to be admitted to the hospital." Didn't feel blessed or favored. We showed up, was greeting by a fellow who said my room would be G1154. "Take the paperwork, take elevator F up to the 11th floor, & find the room." We did & were greeted by a nice friendly nurse. She spend 20 minutes with us answering questions & giving us the lowdown. She told me that an IV would be attached to my IV pole and me until I left the hospital in a month's time. Surely she misspoke, 4 months of straight IV? Yep, we heard her correctly. Wasn't feeling blessed or favored. We were feeling picked on! I sit hear now with two bags hung and dripping and wearing latex gloves.

It was a tearful good night. Les and I made a serious dent in the new clean, germ free, box of tissues. Still not feeling blessed or favored.
Les called me when she got back to the apartment. How sweet and wonderful her voice sounded. Afterwards I thought about being at the best cancer center in the world and how for the next 30 days the nurses and docs were going to fight, tooth and nail, to give me a second chance at life. I was beginning to feel a bit better. Then I checked my email and I noticed a message from an old friend from church, from a person I have never received an email from before tonight. It was a warm email as you would guess having comments about Texas, settling in, and thought & prayers being with us. Then he concluded with a passage from Isaiah 40:31

"But those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint."

Do I feel blessed & favored, not yet. But I know that we are!

A little house keeping before I sign off for the night. Please do not send flowers. They are not permitted & will be refused at the door. My room number again is G1154. The mailing address is:

The University of Texas M. D. Anderson Cancer Center
1515 Holcombe Blvd.
Houston, TX 77030

My room phone number at this time & it may change is: 713-834-9178. Remember, we are 1 hour behind you which means to me, when it is 1pm EST in Albany, it is Noon here in Houston. Your thoughts, good wishes,& words along with your prayers will help Leslie & I feel connected and strengthen. I'm beginning to feel blessed & highly favored even though I know we are.

Stan

Saturday and Sunday

Saturday we rented a car (a PTCruiser) and Stan loves it. We went to a Super Target to get some items that he will need while in the hospital and that I will need (food/cleaning supplies) while I am at the apartment (alone) for the next month.
Today, we are at the hospital because Stan needed his dressing changed and we are getting directions to Kemah ( a boardwalk on Galveston Bay) (to go to today) and to Johnson Space Center ( for out outting tomorrow)!!!!
Hopefully ,we will have our laptop next week sometime so I can post pictures and reply to emails more often!!
ttyl
Leslie

Saturday an Sunday

On Saturday, we rented a car--a PTCruiser--Stan loves it! We went to get a few items that Stan will need to have while h is in the hospital and some food/cleaning staples for me while I am in the apt (alone) for a month.
Today (Sunday) we are at the hospital because Stan needed his dressing changed and we are getting directions to go to Kemah (a boardwalk on Glaveston Bay) today and to Johnson Space Center tomorrow.
Talk to you all soon---Josh should be mailing us our laptop and camera connections this week!
Leslie

Friday

We were not able to do the second part of my demo today, because they were (again) running so far behind.I will have to reschedule it next week when Stan is in the hospital. I passed the first part , IN SPITE of my charming husband shaking and twitching and faking a seizure in front of the nurse--as she was about to freak out, he calmly says "just kidding"!!!!!!!!!
We went to lunch/dinner yesterday at a GREAT Bar-B-Que place called Goode Co. Very Texas, Very 50's, (with a huge buffalo head over the jukebox) and Very GOOD!
We have met some really nice people here at the hospital and on the shuttle--we have exchanged phone# and addresses and I am sure we will follow each other's progress through this process. (one man is having his transplant one week before Stan.
We are hoping to rent a car this weekend to do a little sight-seeing before Stan goes into the hospital----Stan wants to see NASA, then we may go to Kemah or Galveston.
So, until next time--I hope all the rest of you are healthy, happy ,and cool!
Leslie

You know you are in Texas when---

You know you are in Texas when
1)"Chipolte" is used for clothing and food stores alike
2) "Isn't this a nice break in the weather"==means that it is still hot and humid, but it is under 100 degrees.
3) A 10am appointment --means sometime after 10am--could be 20 minutes after, could be 2 hours after and no one seems to be bothered by that!
4) "I" is pronounced "AH"
and the plural of "y'all" is "all y'all"

Communication

We LOVE hearing from people--whether it is a letter, phone call, email or comment on our blog ( for anyone who has not been able to comment on the blog--don't worry, just keep reading the blog and you can still use our emails and We (or at least I ) will respond! Our emails are
leslieanne.wright@gmail.com
OR
lwright@berlincentral.org
OR
stan.lee.wright@gmail.com.
MY Uncle Jamsie called this am and Stan thought that he and I should have a contest to see which of us gets the most communication, SOOOOOOOO
all you Killeens, Michies,school friends, Noelle's Niagara friends(remember who made those chocolate cheery cakes) and Mexico mamas-----WRITE- EMAIL -PHONE ME!!!!
Okay, I'll plug for Stan too----All you WRIGHTS, Leukemia Support group, church friends and Mexico Men's lunch bunch---communicate with Stan.
As I have said before--we really miss everyone and hearing from "home" is
wonderful!!!
Yesterday Stan had 8 hours of chemo and did quite well. Today, I passed my first CVC demo and I have my second tomorrow.
Then we have the weekend off until Stan is admitted to the hospital Tuesday.I'll blog again tomorrow!
Leslie

hurry up and wait

Today, we had a meeting at 10am with part of the transplant team--they finally got to us at 11:20 ! Everything still looks good--Stan does have 10=15% residual leukemia in his bone marrow, so the it is a good thing we are doing the transplant since the leukemia keeps coming back. He has his first round of chemo today--i am sure he will be wiped out after---if i pass my first "demo' today, we will not have to come to the hospital tomorrow--otherwise , he will have to come in to have his CVC flushed.
If anyone is especially curios or has way too much time on their hands, here is the link for an eTour of MDAnderson
www.mdanderson.org/etour
ttyl
Leslie