Got the decorations up....well, almost.

The last couple of weeks have been spent with good friends and family.
I want to especially thank the "Monday Night" gang for making me feel so welcome and loved. I look forward to many more Monday nights with you all.

This time of year is especially hard...and it is comforting to realize I am not alone.

Well, I am going to try to get the house decorated for Christmas....it is a lot of work but, I want to try to keep myself as normal as possible. I so love this time of year...always have.

Happy Thanksgiving!

I would like to wish you all a very happy Thanksgiving!
My love goes out to you all!

Everything is fine here in Las Vegas. I am adjusting. I will spend Thanksgiving with my Red Rock Station family, slot machines and maybe eat a little good luck turkey!

Again, my love to all--and don't eat too much!

Kathy

Thanks for all the Love...

I would like to thank you all for all your kind comments, letters and e-mails. You will never know how much your kindness and love has helped. Please know that Jerry loved you all as much as he was loved by you.

Trying to adjust to a life without Jerry...is difficult, as I struggle to find myself--but Jerry will always be with me and I intend to go on living as though my best friend is still here. The love of my life will always give me the strength to move ahead.

Times are very difficult right now in this world and I want to give myself to helping people that are not only deserving, but in great need. To that end, I will try to use all I have learned (good and bad) over the past 60 years and see if I can make some kind of difference.

Always love one another, be kind and never waste time on unimportant matters--life is too short. Live to have no regrets.
Kathy

Our promise to each other...

Jerry and I discussed in great length our wishes when the time came for either one of us. Even though we made a plan, it is still so surreal to have the time come upon us. I know many of Jerry's friends and family need to grieve and would prefer a service of some kind. But, that isn't what we had planned. We wanted simply to have our ashes put in the sea in Maui. And so, I will keep that promise to my husband...and when the time comes for me to leave this earth, we will go there together.
I don't think Thank You is even enough for all the love and kindness and support everyone has given to our family. It is really quite humbling....but, we Thank You.

Jerry was an unbelievably giving soul...to his family, his friends, and his work.

Kathy

Go in Peace Dear Jerry...

Jerry passed away shortly after midnight last night. He was more than just a very brave person. He fought this disease with as much joy, passion, and honorableness as humanly possible. Jerry will forever be remembered as a "True and Unquestionable Optimist" ....an inspiration to everyone he met. Mom and I are grateful for this blog, Jerry's words, and all the love and support that has come into our lives because of it. We will never be the same without him...never.

To all loved ones and dear friends.

Jerry and I would like to thank you for all for your thoughts and prayers that you have sent. Jerry is unable to talk on the phone or email, but we read all your comments daily! Jerry and I are taking this time together to enjoy everything life has to offer right now. We will worry about tomorrow----tomorrow.
Just know how much you all mean to us.
Love,
Jerry & Kathy

Home is where the love is...

It has been a calm week at home. Except for some house maintenance that needed to be taken care of. There has been much rest, and quiet times together. Jerry has requested some of his favorite meals and mom has been glad to oblige. Mornings are spent with Jerry writing letters, calling his folks, and drinking some coffee. Afternoons are spent eating lunch, and conversation. Evenings are spent with a great meal, the news, and maybe a movie.

Hospice visited with the three of us on Monday...it went very well. A nurse will be here with Jerry every other day or so and is available for any sort of help 24-7 day or night.

We are grateful for all the positive help and comfort coming our way.

Thanks and Love to all,

Jerry, Kathy and Laura

First weekend home from SLC

It's Saturday morning and I can hardly believe I'm setting at my desk here at our home in Las Vegas. I had to have 4-units of platelets yesterday at Southern Hills. But for now... I'm feeling pretty good. Kathy has made all the accommodations for me to be comfortable here at home and to get to the clinic every other day or so. I have not beat this disease, but have learned to manage it's effects day-by-day and to enjoy every moment and friend along the way.

Love to all - JW KW

HOME...

Jerry is home now. Thank you for all your thoughts and prayers.
Kathy and Jerry

Weekend Update

The mornings start with a couple of newspapers and a walk around the the patio.  This time of year is just right after the sun warms up the deck and stays that way most of the day.

I've had a CT-can, a chest x-ray and a BMA last week and another tomorrow.  These results should lead us to donor - keep your fingers crossed!

Our Uncle Leon in Louisville fell down the stares this weekend... didn't break any bones but looks like he's been in a dog fight.

The BM numbers should be reported by the end of the week and a could be found at about the same time.  More on all that later.

Keep It Boring

I've been learning new equipment including MacBook and iPhone.  I just wished I had more time and energy to learn all this new technology.  My focus has been staying alive - 'suppose the rest won't matter much if we don't recover our health... right?

My daily routine has been to have blood drawn and checked and then order a blood transfer for the day.  Seldom do I go through a  day without extra blood products of some kind.

Huntsman has identified a couple of infections over the past month and have eliminated. Kathy and I are pretty impressed with this location.

Huntsman Medical buildings are located high upon the northern hills of Salt lake City.  The view from here into the valley is green and warm.  Kathy and I start our day walking the large patio that surrounds the back side of the whole complex... morning sun out by hospital door and evening sun out the front of the hospital covering the main entrance.

I had another BMA yesterday and should know the numbers from that tomorrow, Friday.  

Kathy pulled out this early morning and returned to Las Vegas sometime this afternoon. Thursday.  She traveled well the I-15 and plans another trip next month.

Meanwhile my 24-hours of things to do here remain the same will often change given a 2-hour notice.  JW/KW

Another TGIF to Everyone!

Hello To All. We have had quite an eventful week here in Salt Lake City. Lots of tests, treatments and then rest! We hope the chemo is doing its job and taking us into remission for the transplant. Jerry is bald totally again and the skin keeps peeling off--but the shaver comes in handy and lots and lots of body lotion!
Early next week is bone marrow aspiration and they are searching for donors now for a match for the transplant. Everyone keep your fingers crossed!
Thanks for all your phone calls, emails and thoughts to the blog; they mean so very much!
Jerry and Kathy

Taking it slow...

Hello... an infection has kept me busy in the room recovering, today. It is warm this afternoon on the west patio -- temps are in for a change, however.
I have overloaded my brain on the DNC from Denver following the many days of Olympics... and now several days of the RNC. I think if you could push CNN into your iPod 24-hours a day you might become an expert at just about anything... except how to change the font size on my MacBook. It is nice at the hospital over the Labor Day WeekEnd and I hope all my friends are living full!


JW KW

Over the hump and late on the draw

I'm way late in updating my blog.
My morning process generally starts with a blood draw at 4am. Labs like to get started early.
I've had platelets and/or packed red cells just about every day... sometimes late into the evening when I have an emergency noise bleed. The doctors watch my blood numbers very closely.
I find relief with drugs that allow me to sleep in the afternoons... quiet times when I skip lunch and just need to relax - when I need to shut down.
I'm developing a morning routine so I can complete all the tasks before the doctors start their rounds and issue orders. I often skip lunch as I am too busy to finish 3-meals. I have a large patio just out my back door which allows me to take several walks a day. SLC is nice this time of year but can be a little cool in the mornings. My shower is generally later in the morning around the skipped lunch hour. I have dropped some weight and eating just does not put it back on. The food here is good value and I have multi-choices.
The doctors advised me to get plenty of rest to recover from the chemo just completed last Saturday. It might take a couple of weeks to pull another BMA to see how the bone marrow is reacting to all the treatments.
I will continue to be more current as my time with my MacBook and the new iPhone will keep me learning for weeks to come.

Friday -too much happening.

I arrived late Monday night by ambulance to Huntsman...and taken away for test and questions late into the night. I have seen about a dozen specialists over these past days. Today is my 5th day of chemo. I am taking at least 1-unit of platelets, daily. I am still working on when to sleep with so many tests during various times of the day and night. This is a work in progress. They are working on putting my system into remission and then doing a bone morrow donor search. If a donor is found and I'm in remission... then the stem cell transplant will have a greater chance of success.

Jerry

No bells and whistles here...

It is about 3pm.  Jerry is taking a little rest. Earlier, I found a cute little place super close to the hospital for Mom.  She said it will do fine.  It isn't fabulous, but it is clean and roomy and the owner is very nice and is easy to work with.

When we came back from getting the place, Jerry was sitting in the window on the couch reading quietly. His room is very peaceful and serene.  Mom and him had lunch together on the couch in the sun.  Today, Jerry tried a piece of fire cooked pizza.  The restaurant on the 6th floor has a big brick oven and they cook fresh pizza's and calzones all day long. Mom saw it when she was getting her lunch, and just had to get a piece for him.  Jerry loved it,  but ate only half cause he had to save room for his chocolate milkshake.  I think he is figuring out that he likes the menu here. Jerry just commented about how wonderful it is that there are no bells and whistles out in the hallway.  This place is quiet all of the time.  No loud talking nurses, or squeaky wheels.

And when he pushes the nurse button, she is here within about 2 seconds.

All is smooth today...not too much drama. I have read Jerry all the comments from everyone, and he says thank you and sends his love.  I think he is going for a walk later with mom...which will be nice.

A Chocolate Milkshake!!!

Jerry arrived close to eleven last night.  Our new best friends Iggy and Carla got him into his very nice room with ease.  Mom and I got up early and drove to Salt Lake and arrived at lunchtime.  Jerry had a very busy morning while we were on our way.  He met with some of his Doctors, ate a breakfast of two fried eggs, english muffin, yogurt, and Special K and especially enjoyed getting served on real dishes and using real forks for the first time in a while.  After breakfast he received another bone marrow aspiration, more platelets, and antibiotics.  Later in the afternoon, he was put on two rounds of chemo simultaneously...it will run for the next five days.  Also, he is already being matched for a donor. 

Like I said...it was a very busy day for him. This place doesn't mess around. Which is a good thing.

Mom and I are comfortable in the hotel after finding our way around. Tomorrow, I will drop her off early at the hospital and drive around a bit to look at some places to live.

The Huntsman Cancer Institute is very beautiful, and the care is abslolutely beyond words.

Jerry enjoyed a a nice meal for dinner...chicken strips, french fries, carrot cake and a chocolate shake.  He said it was the best dinner he has had in a long long time. 

 He is fast asleep now.

Laura and Kathy

Iggy and Carla: Our new best friends...

Well, it is now 3:55. Jerry has been on the road about half an hour. His driver, Iggy and Nurse Carla arrived at the hospital at 2:30. They swooped up to the third floor and immediately began battling the nurses for Jerry's comfort and medication since he will pretty much be laying on a gurney for the long ride. Needless to say, the nurses caved and Carla scored bigtime for my dad. As they wheeled him out of the hospital, he commented about being outside for the first time in over a month. And as they loaded him into the ambulance he raised his arms triumphantly and smiled. Iggy made sure to clear a space for him on a shelf to put his water bottle, phone and personal things for the trip. Mom and I said goodbye..it was so difficult to finally see him leave, but we will see him again soon in a much better surrounding with superior care. He should be arriving into his new room around 11pm.

Laura

A ride and a bed for Jerry

Yes, that was Jerry that made a blog post...but today it is me...Laura. It is 9:35am on Monday.

We have just been told that Jerry's room is ready for him at the Huntsman Cancer Institute in Salt Lake, and his transport is arranged. Now, we will wait for Jerry to finish receiving platelets, and the discharge paperwork to be completed. Jerry's toes are wiggling with anticipation. It was a long day for him yesterday waiting for today. Mom and I are packed and ready for our drive to Salt Lake and to find a comfortable place for her to reside during this time. When Jerry arrives later this evening, he will be immediately checked into his room and hopefully meet with his new team of Doctors. I will post again with updates as Jerry, Mom and I make our way North.

Laura

To Huntsman on Monday

I've completed a 2nd Bone Marrow Aspiration this past Wednesday. My blast count has gone from 8% blast cells to around 19%. These numbers have been accepted by Huntsman and I will be transported to Salt Lake City on Monday if all stays the course.

Kathy is getting organized for our time away from home; deciding what at the house needs to be shut down and figuring out a schedule for everything over the next few months.

Our daughter Laura is arriving very early Sunday to help Kathy with the packing, organizing and getting her (since I already have a ride) to Salt Lake...and will stay with us there for the remainder of the week. Finding a temporary place to live will have to wait until arrival in Salt Lake City.

"TGIF" ICU News

Hello to all!  We have made it to Friday and feel blessed and pleased to be here!  All big problems have subsided for now and the bone marrow aspiration came in at 8% blast cells this morning.  Hooray--that is just one step closer to The Huntsman Center in Salt Lake City and stem-cell transplant!

Again, thanks to everyone for your thoughts and prayers and please all have a great weekend!

Love, 

Jerry & Kathy

TUESDAY'S SUCCESS STORY

Goodbye Tuesday and here's all the "new" news since our last report.  The Blood Marrow Aspiration has been moved until tomorrow morning.  This morning Jerry was moved to a new room in ICU and a procedure was performed to stop all the internal bleeding in his nose and throat--WITH MUCH SUCCESS I MIGHT ADD!  

Our appreciation for all your thoughts and prayers.  

Much Love, Jerry and Kathy

Two Weeks and counting...

Jerry is getting stronger in ICU and is scheduled for BMA on Monday or Tuesday. He has grown from needing assistance for all functions to only a few each day. The Bone Marrow will show us the numbers so we can go on to Huntsman Cancer Center to have a Stem Cell transplant to save his life.
Keep those prayers and good thoughts coming.
J&K Whitlow

To all of U... from the ICU

Jerry has been doing so well for the past few days--he's quite the fighter! The doctor informed us this morning that his white counts are extremely low---BUT THAT IS GOOD NEWS! It means the chemo is working wonders. He has even gotten out of bed today all on his own so everyone watch out! Jerry misses talking to you all, but knows you are all thinking good thoughts and sending prayers! Thanks to everyone----Love Kathy

Fix one thing....break another!!

Hello to everyone and top of the Monday morning to you all. Jerry had a good Sunday and we are extremely pleased with his kidney and lung function. Seems as though we get all those things fixed and another one breaks! He will be receiving blood products today and that will help a good deal.

We are so pleased the chemo is working and giving us a fighting chance. We both so appreciate all your many thoughts and prayers. Keep them coming!

Thanks so much to all of you for your caring and love--it means so much!

Jerry & Kathy

A calm day...

Today for the most part has been quiet. Jerry spent the morning with mom, and ate a big breakfast. His mind is clearing, and he is focused on getting stronger. His doctors met with mom and Jerry this afternoon and are pleased with his progress. They are all working together to keep him on the right track. I will be teaching mom how to post to the blog, as I am leaving for home tomorrow. She said she will do her best to keep up with it, I am sure she will do fine.
Tonight, will be calm as Jerry is more used to his surroundings and nurses now, and is finding it easier to sleep for longer periods of time. We will see him first thing in the morning.

Laura

Mom must have ordered dinner...

It is 5:10...dinner time. Jerry didn't eat lunch today so he is pretty hungry. Mom must have ordered this one, there is a whole lot of lemon juice on the tray for some reason. He is eating it all up and watching the news. Getting some platelets and antibiotic.

My shift is almost done here, and mom will return very shortly. He is in good spirits, and pretty curious about everything that is going on.

Laura

A breathing treatment

It is 3:40...Jerry slept for a bit, and is now receiving his second breathing treatment of Albuterol today. He really enjoys it, and it makes him very talkative... kind of like laughing gas..he won't stop babbling to the nurse and breathing specialist right now.

He is finished with Chemo, and now that his sinuses are clear he will probably rest a bit more, and eat some dinner.

Laura

Watching some golf...

It is about 1:00...Jerry is relaxed but has his eyes very fixed on the television watching the British Open from last week on channel 18.  He has had a peaceful morning with mom, she read to him all the wonderful messages that friends and family have left for him on the blog...he was most happy to hear them and both my mom and dad thank each and everyone of you for your unending love and support.  

Out with the Bi-Pap!

It is 4:45...Jerry's Lung specialist Dr. Warzniak just came in to tell us that even though we will never know if it was the Leukemia that filled his lungs with fluid, or the pneumonia, that it doesn't matter because they are getting better.  Whether it was the chemo that helped, or the antibiotic we will always wonder.  Dr. Warzniak said he would get the Bi-Pap out of the room by tonight and told Jerry that whichever is working is wonderful news and God Bless.

Jerry just asked me to call Mom at once to tell her.

Laura

Relief and Rest.

It is now 2:40pm. Jerry and I talked for a few minutes...but I could tell that he was pretty worn out from being so active this morning. He is doing so well staying alert, and breathing steady.  It is still very tiring for him but he is doing it.  I asked him what he was telling himself inside his head to keep so strong and defiant.  He said, "There are all kinds of things going on in here, Laura....you would be amazed!"

Mom is home taking a little break. In the afternoons his pain starts to get to him...he called the nurse and asked for a pain shot. He joked with the nurse about how fast it took effect....that he hadn't felt that good since the 60's...and how nice it felt to get some relief so that he could sleep.  I told him I would be right here...quiet as a mouse working on the blog. He is asleep now...well, at least for 9 more minutes.

Laura

A phone call from Jerry.

The phone rang this morning at around 8am. Mom usually doesn't answer the main land line, always her cell phone...but she was sooo glad she did today because it was Jerry calling. He wanted her to come to the hospital asap! She called us at home at about 9:30am and said that Jerry was out of bed a bit today, and that he had eaten breakfast, and is still off the Bi-pap machine,and pretty aware of things. Also, his kidney test results came back normal. He is one hell of a fighter everyone.Your prayers and thoughts are working !!!

Mom is coming home in a bit, and then we will head back to see him this afternoon.
I will write more very soon.

Laura

Every ten minutes...

It is about 4:00pm.  Jerry, was given a pain shot, and is slightly out of it right now. It was a stressful hour...the nurses were changing his linens and he had to move around a lot, it wore him out. Also, they just completed an ultrasound on his kidneys, but there is no word of the results as of yet.  It is difficult for him to sleep for any long periods of time, because every ten minutes they are doing something to him. But he seems settled now, and just said hello to Julye.

Laura

A morning shave.

This morning mom, my husband Jim and I arrived and again Jerry was sitting up, finishing his morning cereal. Today he got his Special K. The television was on, and when he saw Regis and Kelly he decided he wanted to shave...and he did. He has been off the Bi-pap machine since before we got here and it is now close to 10am. He doesn't talk much because it is easier for him not to...but when he does he is mostly clear and understands what is happening. He is resting quite comfortably right now...dozing off here and there, trying to read the ticker on the CNN channel. Dr. Kaplan came in moments ago, and told us his white blood count has gone down from 39,000 yesterday to below 12,000 today. Very good news. His lungs are still very full of fluid, and his kidneys are being watched closely for failure due to all the medications he is on. This will be the third day of chemo. He is asleep right now, with his glasses on.

Laura

Tuesday. Hour by Hour

Thank you to Bob and Pat, Jim and Loree for your thoughts. As I am writing this for my dad (Jerry), we sit in the room with him. When mom and I arrived this morning, he was sitting up, and to our surprise... quite alert. He was ready for some breakfast. He insisted on eating a bowl of cheerios by himself which he managed to do quite well. He mentioned that it wasn't Special K..but he ate it anyway. He was off the Bi-pap machine for well over an hour... which is a remarkable improvement from yesterday. His breathing stayed calm and steady, but was still difficult and tiring for him. He said he felt as though he was in a test tube all night, and asked us to tell him about it...we did. The three of us had a few good talks in those moments of clarity and he even managed to rattle off a few eye rolls and quick witted words to mom. After leaving last night, mom and I thought we wouldn't get to talk to the Jerry we know again. It was wonderful to have him back even for that brief of a time.
I will try to keep updating often throughout the day...having the computer here at the hospital does help...things change hour to hour. I know everyone is very concerned, and wants to know what is going on...the support that Jerry has is unbelievable and strong. I will do my best to share the information.

Laura

In the hospital...

Jerry has been moved to intensive care at the hospital today.
His oxygen levels are very low and it is causing great distress.

Mom is there with him, and I will fly out immediately.

Laura

Blood comes first....

Sorry, Roger, and other friends and family... the lack of posting is really due to my inability to get on the computer as often as I used to. When I do, I try to catch up on e Mail and other office work that I have neglected. However, tonight I find myself receiving blood components for the 5th day following my 3rd round of Mylotarg. This stuff has greatly reduced my blood count but, I am on the path to a long awaited and much needed stem cell transplant late this summer at the Huntsman Cancer Institute in Salt Lake City.

My wife and business partner Kathy, all of our good working buddies, Jacquie, and John and Robert are going to hold down the fort at LVGI while I head to Salt Lake City. JW

After Mylotarg

I've completed two rounds of the clinical trial drug, Mylotarg... the last one on Monday followed by 2-units of platelets and 2-units of red pack cells.  I certainly feel better after I top off my tank. Final round is on Thursday this week.  

I'm starting the ground work on a stem cell transplant at Huntsman Cancer Institute in SLC.  The time might be right to start for a late summer transplant.   

On a happier note, our daughter, Laura, arrived last Thursday night and spent the w/e with us. She went with me to the Roth's 4th of July party and then we ate and slept most of the weekend. Laura's always great healing for Kathy and me. JW

Clinical Trial Twist

The doctor visit today said that I have too much leukemia to take the Clofarabine clinical trial. So we're meeting tomorrow to get me started on Mylotog?? My blast cells are now 20%... that's not good. It looks like I'll be doing the clinical trial for 7-days over the 4th of July as an outpatient. Our San Diego daughter, Laura, will be visiting over the 4th! Kathy and I never miss the fireworks from Robbie's house in Spanish Trails... that's an annual tradition and one we always look forward too! Happy 4th everyone! JW

Baby and Blood

Our daughter Julye had a baby girl yesterday... all is well. Kelsie Lee arrived in this world without much fuss at almost 7lbs and 19".
I received 2-units of platelets Wednesday morning and will have bone marrow extracted on Friday morning. Results of BMA won't be known until next week. Then we'll see if I qualify for the clinical trial. Meanwhile, my hair is returning and I work every day until noon or so. I even make it around the grocery store with Kathy most of the time. More next week. JW

Clinicial Trial Update

Thanks very much to Gail, Roger and Hutch for your comments.
I'm in the hospital today for my weekly blood transfusions. Lunch will be served soon and I expect we'll be done by supper time! We invited ourselves to the Roth's for supper.
The clinical trial will start with a bone marrow aspiration next week and based on my numbers, we will schedule the trial shortly thereafter. Huntsman said I would do the 5-day stay here in LV if my hospital can handle the process - yeah! Any time I can stay close to home is a wonderful thing.
All our family is very well and our daughter Julye, in Denver, has already dilated to 4-centimeters - can she hold on until July? JW

Clofarabine and Beyond!

We're still exploring the clinical trial research study. That means I'm still learning what it is and it's side effects and if I can take it here rather than in SLC. The treatment is a more aggressive form of clinical trial than I've had in the past while in Houston. It is administered by infusion as an inpatient for 5-days. If we can get the drug and if my hospital can do it then staying here in LV would certainly work better for Kathy and me. I'm meeting with both doctors early next week to answer questions and schedule the clinical trial. JW

Back from Huntsman

We (Joe and I ) completed our round trip to Huntsman Cancer Institute in Salt Lake City last night after arriving late in Mesquite. We spent the night there before coming back home this morning (Saturday).
Salt Lake City is very lush, green and clean...just a wonderful place for the summer.
We even had breakfast Friday morning driving up Immigration Canyon at Ruth's Diner and her famous Mile-High biscuits!
The best news is that Dr. Shami has 3-clinical trials he would like me to consider. So, Kathy and I will explore these options with Dr. Sanatinia on Thursday during our visit.
Both of my doctors have a long friendship and are comparing notes in preparation for our meeting on Thursday. The Huntsman Center does do stem cell transplants should I decide on that later.
Driving for 12-hours is not something I would do again as an overnight trip. Flights today only costs about $150-round trip with half-dozen airlines listed.
Tuesday will be blood transfusions and Thursday will be decision time. More on that next weekend. JW

Prep for SLC

I finished a couple units of platelets last evening and will be preparing for our trip to Salt Lake City, The Huntsman Cancer Institute to visit with Dr. Paul Shami who specializes in myelodyplastic syndromes and leukemias. Dr. Shami has a new clinical trial that might just work for me and has ask us to come visit him this Friday afternoon. Kathy and I will make a mini-vacation out of the trip and leave on Thursday. More on that this weekend when we return. JW

No More Houston!

Kathy and I told our cancer doctor that we are not a candidate for stem cell transplant. We are interested in field trials and to perhaps see another doctor specializing in MDS. Dr. Sanatinia said he will contract the Huntsman Cancer Center in SLC and request they look at my numbers and accept me for review... and they have. We don't have a date for travel but will likely schedule something in June.

Meanwhile I'm starting to take a prescription on Monday which will eliminate some of the iron buildup in my blood - common effect of blood transfusions. Kathy and I go to my office everyday until about noon and I'm feeling pretty good as long as I get my weekly fill-up. JW

Lab Update

Thanks for the comments from Cousin Gail and Nephew Roger and letter from Grady. This is just a quick Tuesday update following labs this afternoon. I will be overnight in the hospital receiving units of 3-platelets and 2-red packed cells.

Kathy and I will meet with my cancer doctor (Sanatinia) on Thursday and continue to explore our plans against going to MD Anderson in Houston. More on that later in the week. JW

Staying Home

Mom and Dad arrived back in Florida last night. We spoke every evening as they traveled I-10 back across the southern portion of our country. Although Dad drove for 11-days (he's 87) and said it seemed like much more. The trip was sure wonderful healing for me and afforded Kathy and my folks to spend more time together than all of our 25-years of marriage.

I've decided to stay here in LV to fight this blood disorder. I will have more mental energy and more love around me than I could ever have in Houston. MD Anderson holds no guarantees for someone of my age and condition. Here I have quality of life, my friends, my family, my home and my doctors. I've even started seeing my kinesiologist just to gain balance in my body.

Medically, I will be doing labs 2x/week and blood transfusion 1x/week. We will continue to look for clinical trials for my MDS that fit my condition. More importantly - enjoy every minute I'm alive. JW

Caught between two places

The doctor said my blast cells number 10% following my last round of chemo and a bone marrow aspiration. That's too high for stem cell transplant and too low for another round of chemo. Caught in-between... my life over the last couple of years is setting in-between. Quality of life has become paramount in my thinking recently.
Mom and Dad's visit ended this morning as they left to drive back to Florida. Tony and Billie were here with their 5th-wheel and left this morning as well. Their visit was wonderful and I'll put some photos here of us real soon.
Kathy and I are alone with our thoughts about me especially since my meeting the Dr. Sanatinia. So we'll report our thoughts with the next posting. JW

Mother's Day update

Well, it's not been quite a week since my last post but that's good news as all the antibiotics are working and keeping me out of trouble. I finished a bone morrow aspiration last Tuesday and won't know the results until Thursday next week.
I've been returning to the office each morning... work there with my team members until mid-morning and handle the rest from my home office. I like being safe at home where I can spend as much time with Kathy as possible.
Mom, Dad, Tony and Billie should arrive the evening of Mother's Day. I'll be putting up new photos of the Whitlow clan. It's warming up in the valley and that will allow us lots of time to enjoy the patio and each other. JW

In and Out

Antibiotic drip is working and I was sent home with a nurse to continue treatment, on Thursday night. Kathy will administer the treatment every evening around 5pm the whole process takes about 45-minutes.It's beautiful here in the valley this time of year and I am so very glad not to be watching it from my hospital bed. I hope to go along with Kathy this weekend...just to ride in the car... like a dog. Anything, just to get out in the world. JW

WTF?????

I am being re-admitted as of 5pm tonight. My infections results came back positive and must be aggressively treated with IV. This story may change often. Buckle up, it might be a bumpy ride! Sure would like to stay home longer than a couple days. JW

Monday- home again

I don't know when to stay and when to go any more. Mostly I just want to go home... where I am located currently.
Thanks to Laura for posting a message for me. I was down for the count last week and hung onto Kathy like she was my last friend. We must have been a site in the ER both of us sobbing in each other arms. Thanks for a morphine drip for 3-days to help with all the pain. JW

Three days home...

My dad is in the hospital right now...so I am writing this post for him. There is much pain and discomfort for him right now from this round of chemo. It is a complex situation that his doctors are trying to solve. It is tough for my mom to watch him in so much pain...she is so strong and brave for him. He is at least a little more comfortable now with some constant pain medication. Your prayers and thoughts are appreciated. Thank you.
Laura

Go Home Young Man!

Today I get released. I will continue treatments at home and at the cancer clinic. Thanks Gail, for your recent comments - I'll want to learn more about MS and how my cousin Trina is handling this challange. And from Roger in North Dakota where the ground thawed last week and from my traveling friend, Hutch.

Monday's Post

White counts down to .2 and holding. I'm holding in the hospital until my white counts climb/grow. Meanwhile, I continue to receive platelets and red blood transfusion plus various antibiotic drips 3-4 times a day... what ever it takes to help my few crippled white cells to hold on and keep fighting.
I've lost 10-lbs since starting chemo and have reached a fighting weight of 145. I'm sure my golf game has suffered... sure would like to prove it. JW

On the 3rd day

Three days and my white count has dropped to .5 -expected. I've had 1-unit of platelets since the last update along with antibiotics by IV and little shots in my fat tummy to help that poor little white cell.
I'm comfortable and always look forward to Kathy's visits. In the evening she brings me some of what she's making for her dinner. I certainly miss her home cooking while I'm away you can bet. All the doctors say I'm looking great! This place will say anything to keep you in their rooms. JW

Hospital II

My blood numbers were too low to allow me to live outside the hospital another day. So, Kathy checked me in Tuesday afternoon where I received 1-unit of platelets and 2-units of blood... the last unit is about to finish this morning.
My room has a beautiful view looking west. The tops of several palms trees and the LV mountains 3-miles away make for great viewing all day. I'll be here until my white cell count recovers... it's currently .9 - I think that means I have less than one white cell running around protecting my whole body. What hair I've grown on my head will likely be grazed off over the next week.
Kathy and I have enjoyed a wonderful spring together in the Las Vegas valley. My family is arriving on Mother's Day next month. I'm anxious to get all this chemo out of the way so I'll feel well enough to entertain. JW

Chemo on the Go!

I finished my 56-hours on chemo with a portable device. No hospital stay.
I stayed home and watched the Masters and got to enjoyed several days with Kathy by my side. Labs will be taken on Monday morning to see if the chemo has started to work. If my numbers get too low, I'll have to check-in to the hospital for daily blood and platelet transfusion. Meanwhile, I feel great and happy to stay home... at least today. JW

Time is all you have. And you may find one day that you have less than you think.

Randy Pausch, The Last Lecture

My recent BMA (Bone Marrow Aspiration) numbers are telling my doctors to start round-2 of chemotherapy next Tuesday. 3-weeks in and 3-weeks out. It could be worse. My last visit in was 25-days and I'm planning a shorter trip this time due to my intake of Power Foods. Right?

Julye, our youngest daughter from Denver, and our newest granddaughter Kayle who is 11-months old, have been visiting us since last Tuesday. Julye is expecting another child in July...whew!
Laura taught me how to put Kaylie's photo up here for everyone to see.
They will be leaving on Tuesday, the very day I get admitted into the hospital... which means Kathy will have an empty house again.
I had to push the plans for Mom and Dad, Tony and Billie to visit us into May. I'm glad they are flexible. Tony and Billie are bringing their 5th wheel; I'm looking forward to seeing that as they've offered it to us while were in Houston! JW

Enzyme Me

Following my BMA on Tuesday, my two doctors (LV and Houston) reviewed the numbers and decided the chemo is still working and that another BMA should be scheduled for next Monday. That’s a BMA every week for 3-weeks. New results will then be presented to us by the end of the week. I have gone 20-days without a blood transfusion on Monday. All this year I’ve been getting a blood transfusion at least weekly. Chemo must still be working?

So, I love being home with Kathy! My white counts are at 2.9 which is triple the count from 14-days ago when I was released from the hospital. I have gone to the Roth’s for Easter Dinner party, to the office most days for a couple hours, drove and ran a few errands for Kathy and washed the car. We’ve cancelled going to the wedding for Jon and Danielle tonight because of the large group. All in all I feel almost normal. I would like to get out on the golf course this next week!

Thanks for the birthday cards, calls and eMails. There was a time last year I didn’t think I’d reach 63… but here I am; continued discovery of good natural stuff for my body along with enzymes which I’m starting today. So, all is well for now… maybe I can stay away from the hospital until the 2nd week of April! JW

Home for awhile

I was released from the hospital last Monday evening after labs and 1-unit of platelets. After having been away for over 3-weeks, being home is a real joy. Every hour with Kathy along with her home cooked meals is heavenly. Freedom is not being taken lightly. And every day is cherished.
I will visit the doctors late next week to review the results of my bone marrow aspiration and at that time they (both my Las Vegas doctor and my Houston doctor) will tell me what the next treatment will be. Meanwhile, freedom!
Happy Easter to everyone! Be sure to read all the updates and changes Laura has made to my
"Do what I do...eat what I eat" blog. She's done a wonderful job researching super foods and drugs. JW

It could be a BIG Monday

All my antibiotic drip has been converted to pill in preparation of my going home. Dr. Michael said that another bone marrow extraction needs to be scheduled for mid-week. This is to see what and when the next treatment needs to be. Meanwhile, I may get to go home to recover until the next round. Great news for me and my 4-walls and greater news for Kathy who is taking care of me twice a day with clean pajamas, food, newspaper and other goodies.
It snowed in the LV foothills overnight. Snow levels down to 3,000'. Kathy took me outside to see some of the view before it all melted. The wind was 20-30 mph and the temp was 42 so we didn't spend much time outside walking around.
We're watching the final round of golf today with Tiger Woods leading the field and waiting for the storm to pass and for me to go home... it could be a big day tomorrow! JW

Tammy Jo

I had a visit from Tammy this morning... she is my other niece - Shawn's younger sister - who lives in Longmont, Colorado. Tammy & Jared have 5-daughters ranging from 13-years to a College Freshmen - living all under the same roof. I have not seen her since she and Jared were here in LV getting married ... about 8-years ago?

We set and visited for a couple hours before she departed. Kathy arrived in the middle of the morning to find this young girl in my room before she recognized Tammy. So, Kathy gave up her morning and left us along to visit.

My visit with Kathy tonight made up our lost time from this morning. She brought White Castle Hamburgers for us to snack on before dinner. Hey, these don't have any pickles!

This week has been leading up to my Bone Marrow Aspiration (BMA) which was done on Wednesday, 3/12. Dr Sanatinia said it would take 24-hours to get the results. Even though the results were not in this morning, Dr. Sanatinia stopped by tonight to tell me that the chemo had reduced my blast cells to 6% -down from 33%. That's good... but not were we need them to be as the White Cells have not recovered. We are waiting for a call from Dr. Kantarjian so we know what to do next.

So, it looks like I get to watch Tiger Woods play again this weekend on my 27" TV in the hospital. Kathy and I always find something of which to entertain ourselves ... so far my time spent here it has not included having to use coloring books. JW

There's No place like Home!

My light at the end of the tunnel goes out with every turn.
My white counts are too low... that's normal.
My blood numbers are low... but, that's normal.
Wednesday is my Bone Barrow Aspiration... which means by the end of the week I might know something like did the last round of chemo work? Do we go after it again or try something else?
Dr. Suvarna has determined that I have no fever and no infections in my blood stream - so why am I still getting hanging antibiotics?
Meanwhile, I'm still ingesting the Wheat Grass and pond scum.
I am bald! Actually, I have a nice shaped skull. I just need a little color. JW

Weekend Release?

Dr. Suvarna visited me at 9:30 last evening - I'm telling you these guys show up at all hours. There are a number of test results that are coming in today that will resolve a number of issues and setup a date next week for a bone marrow aspiration. But most importantly perhaps will be a discharge from the hospital. Although I may have to come in daily for tests and transfusions, it certainly would be better that being here 24/7.

Kathy is coming up this morning with coffee and the daily newspaper - and her smiley face. She and I have spent many 100's of hours thinking about my future and her's. There are a number of ways this will play out. JW

No Life Outside

I have 4-doctors a day coming thru my room. I never know when one will show.
I make notes in my book or BlackBerry or call Kathy on her call phone so she can listen.
I’m loosing my hair and my port might be infected… that’s the forth doctor.
I have Kathy running around so much she has canceled all outside engagements until I can return home. Even today she did not have time to have lunch with her girlfriend- I made that call for her.
I’ve had a CT scan, a chest x-ray and more blood transfusions than I can track.
I maintain an office here in 413 of reverse isolation with my back to the mountains and my nose on my lap top. My WBC has reached 1.6 this morning – I’m coming back! JW

Hump Day Wednesday

Well, just more hospital stuff. My temp was running 101+ on Monday and Tuesday while I started taking rounds of antibiotics from IV. On Tuesday, I was taken for a CT scan of my lower GI - this area is not happy! Good news is that the CT Scan showed normal.The other good news is my white counts are growing, finally at .8 - normal is 4.8- 10.8. This number is below my normal becaurs of the chemo.
I did another round of Platelets’ yesterday and will be having a bag of Red Cells this afternoon. Over-the-hump-day Wednesday and we keep doing the same thing and waiting for the same results. I hope to visit with the doctor over his lunch hour and get a clearer picture of what he is planning to do.
I’ve become lost and can no longer find my way This may seem like a strange thing to say just after you've just let the horses out of the barn, but, I'm into my 15-day, thought I be here 5-10, and they're talking about a Bone Marrow Extraction on the 21st day... that's 3-weeks as I see it. Has anyone done this before? JW

I am not alone...

March - I'm still here!

Twelve days and counting. I only have blood transfusion every other day, now. However, my white counts would not sustain my life should I leave the hospital. Kind of like bubble boy. Labs were pulled this morning and I expect to visit with my doctor shortly to see if the white counts are finally starting to move upward.

Joe and Ricki Brady drove from Mesquite on Friday to visit with me for about 1-hour. They spent several hours with Kathy who sometimes needs a break from me. My good friend Ron Cisco from Denver called this morning during the Sunday snow storm. He and Barbara and the dogs are doing fine.

Kathy brought me grilled cheese on Sheepherders Bread last night for dinner. What a joy that was and a joy not to eat the hospital food!
Kathy is visiting this morning with the Sunday Review Journal and a Grande Americano from Starbucks. She knows how to keep me happy.
I may be in this hospital for the week - too bad as LVGI has a booth at the Bingo World show at South Point Casino next week and I will miss seeing a great number of my business friends and potential new prospects. Hey, I just hope to get out before we start this treatment again! JW

Thursday and Counting

My days start with a blood draw for labs and then the doctors decide if I need Red Blood Cells or Platelets... of which I receive around noon. I have a lot of down time and fill it with my laptop computer and doing work at the office through the network. The worst part of the hospital is the food... it's not bad but it's always the same. And my taste buds find everything rather bland. If I have to smell gravy on mashed potato's again I think I'll start a food fight!
I call Mom and Dad every morning around 6am. They are solid. I get a call from my Kathy around 7am who invites me back into my real world and always wants to bring me something I need and something to make me happy. Just seeing her walk into my hospital room with a bag of goodies in one hand and the other arm open to give me a hug is my biggest reason for living. None of this would be worth it without her. And she is very alone most of the time taking care of herself, our life, the bills and me. The burden on the care giver is beyond most peoples understand. She will go days sometimes without a call from anyone but me. I wish very much that she were closer to our family members while I'm away.
Breakfast has arrived, 8:45am, and I can hardly wait to find the mystery meat on my plate.

This is the 9th posting for February... if you want to read any of my previous posts, just click on Older Posts on the bottom of this page or the sidebar on the left labeled "All My Journal Entries"

JW

Results on Tuesday

I finished chemo late Sunday night and felt like I was run over by a beer truck most of Monday. Parts of me were saying I had the flu and other parts told me I was 101-years old. This stuff is nasty! The doctors and staff here balance the chemo with all kinds of side drugs and IV so I have very little nausea or lose of appetite. My IV's have been reduced from 4 bags to 1 bag.
I expect to see Dr. Sanatinia, my cancer doctor, this afternoon to give me orders for 2-blood transfusions and to give me some idea when I can leave this place. Being isolated in this hospital room has proven more difficult than I expected. Kathy has been making trips up here to a couple times a day; bringing me fresh PJ's and snacks, today's newspaper and just the warm glow of her smile. Her girlfriend Robbie has stopped in a couple times as well.
So, today's the big day and I have a list of questions for the doc as I post this blog before sunrise on this fine Tuesday morning. "We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed" - 2 Corinthians 4:8,9
I hope all my extended family everywhere is doing well. Love, JW

Hospital Day 3

I finished all the 4-blood and 2-platelets and begin chemo on Thursday night. The first bag of chemo took 30-minutes but the 2nd-bag will take 3-days. It is a slow continuous process that will be finished Sunday night. This stuff really attacks the stem cells right out of the bone marrow. We will find out what my blood counts are next week and will rebuild my system with red blood cells and platelets again.
We’re uncertain what the resolve will be other than I will need this process 3-times before I return to MD Anderson in May. Getting into remission is how I will qualify for stem cell transplant. A stem cell transplant is the only thing that will save my life. Kathy and I have talked long and hard about it and will have to make plans to repeat the process started in Houston last August. I’ll have more on the results of the current chemo next week… maybe Monday. JW

Next comes Chemotherapy

My blood numbers from Houston… not so good. My doctors have told me to give up on these clinical trials and go for Chemotherapy IV. After seeing my doctor here on Wednesday and watching my numbers drop even more, Dr. Sanatinia decided to check me into the hospital for 5-days. I started receiving red cells and platelets right away and into the evening. I am continuing at this moment with my 4th bag of red cells as I write. I knew I was in trouble when I could barely walk from the plane to my car after arriving Las Vegas.
Getting me loaded up on blood count before I start chemotherapy is the goal. I will be receiving Cytarabine and Idarubicin tonight as an infusion into my chest port. My doctor said it is a 3-day process and a couple days of recovery.
Kathy and I are reading about the drugs and will know a lot more after it is pushed into my system. Meanwhile, Kathy has been shopping comfort foods for me. It has been like my birthday every time she comes to visit! JW

Celine...

Tuesday in Houston

I left Las Vegas on Monday morning to arrive Houston in the early evening. My treatments at MD Anderson start early Tuesday morning. We switched plans in Austin. A young lady sitting by the window next to me went to sleep as we pushed out of the gate and woke up when the wheel touched down in Houston. Pissed me off that I can't get to sleep even after a Tylenol PM!!
My overnight stay at the Holiday Inn Express was complete with dinner at either Pizza Hut or Burger King -I chose Burger King as they had seating. Holiday Inn did breakfast the next morning. I was surprised how they could screw up a Denver Omelet and throw in a dry biscuit and still charge me $9.
Labs and blood marrow went well Tuesday morning. My platelets are too low and I bled out on the examination table where they drilled a hole in my ass. Now they've decided to give me platelets before I get back on the plane, however, I have a flight out at 6pm and they can't get started until 4pm. I make my flight or spend another night in Houston.
Kathy is making Oyster Soup for supper and I never miss supper with Kathy! We're seeing our local cancer doctor this Wednesday afternoon to begin an alternate chemo treatment. More on that later. JW

Tuesday Express

Tuesday's blood numbers were a fright! I was admitted to the hospital for 3-units of Red Cells and 1-unit of Platelets. The process sent me home about 6am on Wednesday... I took the day off and worked from home.
Kathy and I are really enjoying the health information Laura has been digging up off the Internet. It has inspired her to develop another blog for our site whose link can be found on the upper left of this site. Or you can just click HERE We are working thru this maze of herbs and pond scum to incorporate all the ideas into my 3-meals a day. This has resulted in my taking 2-less drugs already! There are parts of me that have never functioned better. So, take my advice and watch some of the videos from Natalie and follow some of the movement from so many directions that focus on self healing along with a little help from Mother Earth.
My blood numbers looked fine from yesterday and I'm headed to Houston on Monday and Tuesday... more on that when I return. Meanwhile, stay well! JW

Do you have faith in conventional medicine?

I ended the week the way I started - with a blood transfusion. I had a reaction to this last one and played couch potato most of Saturday. But, we're feeling fine and ready for another week of opportunities. Well, not really.
I'll be doing labs on Tuesday and Thursday of this week and will most likely have a transfusion on Thursday. Next Monday I leave for MD Anderson for Labs, Bone Marrow Aspiration and a visit with Dr. Kantarjian.
Meanwhile, we're looking into the John Huntsman Cancer Center in Salt Lake City for my treatments and chemo trials. MD Anderson is a wonderful place for stem cell transplant - but as you know, we're beyond that. So, a closer facility and a new approach and focus might just be the ticket.
Strange, I did not create the heading for this post... I simply touched the "D" key and that showed up.

"Instead of treating the symptom, treat the cause. The symptom will then disappear. Only then will you experience a true cure." sent to me from Laura. JW

EEK of a Week

Well, two weeks was too long and I ended up going in for transfusions last Monday. My skin looks like I have the Measles from where my blood started leaking thru. My doctor was on vacation and I thought I could make my body do the same. WRONG! I’m seeing my vacationing doctor on Friday this week. So I expect to have another round of blood transfers Friday night into Saturday.
The great news is while Kathy is recovering and healing and taking all these tests, we have our daughter Laura staying with us from San Diego. She is always helping us by entertaining, keeping our minds off our old bodies and keeping our attitudes happy. Besides, she is a preschool teacher and treats us the same of her 3-4 year olds… we fit right in.
My folks living in Florida escaped all the horrible tornadoes this week and are enjoying 65-years of marriage today. Kathy and I are still waiting for both of us to feel good enough on the same evening to enjoy that free dinner waiting for us at Farraros Restaurant for our 25th anniversary.
We’re warming up in Las Vegas and Kathy and I looking forward to getting out and walking the neighborhood just as soon as both of us are back on our feet. Laura plans to leave as soon as Kathy starts giving orders. She’ll know her work is done. JW

Super WeekEnd

My Doctor

MDS International Foundation anounced: MDS is a relatively young disorder, yet in the past several years, great strides have been made in treating MDS. Treatment options now include three different medications. I am currently on a clinical trial from MD Anderson called Clofarabine. This drug is only administered in Houston. My cancer clinic here in Las Vegas transmits my blood numbers to my Houston team when ever I have labs taken. Currently, I'm scheduled to return to Houston February 18-19th for evaluation. At that time we'll see if the current treatment is working.

It's a quite weekend here at the Whitlow's abode as we watch Tiger play the Dubai and of course the Super Bowl on Sunday. I plan on a little skin in the game by taking the Giants and the under.
Kathy is adjusting to her new treatments and medicines and gets a little better each day.
Thanks for your thoughts, prayers and kind comments for us. JW

Kathy has a smile on her face.

AM/ I'm taking Kathy to her new doctor today at noon. She has not been 100% since we returned from Houston. We're hoping this doctor will listen to her, run a battery of tests and help her feel better.

My cancer doctor has moved my visit from this week to next... no labs this week! I know my body so well now that if I need red blood or platelets I know to rush for labs right away.
My next scheduled trip to MD Anderson in Houston is Feb 18-19.
The chemo pills will be completed on Jan 22nd so we'll see what my blood numbers are saying at that time. I am focused on Kathy's health as well as mine.

PM/ The results of Kathy's visit with her new doctor were....well, I can say she has finally found someone who understands her. She has set in motion some much needed tests over the next month. Actually, the doctor seemed like she had seen many women like Kathy and instinctly knew right away what to do. She emphasized that stress can put our systems completely out of whack to a point we begin to actually take on serious medical problems. Stress!

Kathy and I are so grateful to Pat and Bob for sharing their wonderful doctor. It just means the world. JW

One Night Out

Labs and a visit with my cancer doctor found me packing for a night at the hospital. The order was for 2-units of red blood and 3-units of platelets. The check-in at 5pm was easy to make as I ran home to collect my computer and jammies and drive thru McDonald's on my way to admissions.
However I laid in bed until 9pm before anyone stuck me! The whole process took until 6am this morning. I'll meet with the Hospital Administration in a day or two and see if we can condense this process.
Now that's off my chest I can say "Thank you" to the people who gave up 4-5 hours of their life to do blood aphresis to save my life. We don't know each other but I know first hand what a commitment this process takes.
We're trying to stretch the hospital visits as each is a $500 deductable. Next visit in two weeks. JW

Being Curious is inspirational!

Listen to this more than once.
Trust me.
You'll get it.
LV

Three Days and Counting

Ok, so I started the chemo pills on Thursday. No problems the first day. This pill treatment is taken early in the morning on an empty stomach. However, I felt like I had the flu on the second day. Kathy and I were shopping at Smith's when she turned to me and asked if we could just go home? We couldn't get their fast enough.

She nursed me with comfort drugs, hot potato soup and a heating pad. Both of us felt better by bedtime. This third day of chemo is just headaches, but they are managable. I have two more days on these pills and then I will return to Houston on the 19th.

We're trying to have a normal Sunday and watch some terrific football.
Go Chargers!!!
JW

Falling into a medical abyss

I read this article in Newsweek recently...
it struck close to home. Thought I would share it with you all on the blog. JW

Living with a rare disease is a little like being an orphan. But one doctor has helped me find a home.

Some days I wish I had cancer. I'm even tempted to tell casual acquaintances that I have cancer, because when I say "severe aplastic anemia" they look at me blankly, or they reply that their aunt Sheila has anemia or, worse, they say, "Thank God you don't have cancer." That's what the hematologist said after reviewing my bone-marrow biopsy: "The good news is, you don't have leukemia."

I run my uncle's internal-medicine practice, so I see cancer patients and survivors all the time. There isn't much that shocks or frightens anymore in this exhibitionist age, but there's one bridge that everyone still trembles before: cancer.

Yet during my first trip to the oncology ward—oncology because there are no wards for aplastic anemia—four successive roommates, all leukemia patients, returned to their lives after receiving treatment while I stayed and reflected on mine.

Aplastic anemia is a noncontagious disease in which, for unknown reasons, the body's immune system destroys newly formed blood cells in the bone marrow, causing life-threatening anemia and high risk of infection and hemorrhage. When you have a rare disease like mine, you don't fall through the cracks in the system—you fall through a gaping abyss. There is no money for what you have, no telethons, no support groups, no ribbons of camaraderie. Because there is no profit in developing and testing drugs for rare diseases, they've been lumped together as "orphan" maladies, much as real orphans are crowded together in one place to be more efficiently cared for. And the metaphor of being an orphan feels all too real, as if you're abandoned to dark corridors while mansions are constructed to treat diabetes and AIDS and Alzheimer's. When you're an orphan you envy people with families, even such horrific families as cancer.

But there's one glowing advantage to having a rare disease that perhaps redeems all the rest. You never have to wait for an appointment. There may be only a handful of specialists in the entire country familiar with your disease, and you may have to endure hardships to reach them, but they'll see you right away, and they won't have to look at your chart to remember your name.

After I was diagnosed last April, Dr. Jaroslaw Maciejewski, a Polish-born researcher at the Cleveland Clinic, offered me an appointment in three days, and even then apologized for not being available sooner. My parents drove me two and a half hours to the steel-and-glass structure on the Cleveland Clinic campus called the Taussig Cancer Center, because there are no buildings for aplastic anemia. As a child I had reveled in my nonconformity, but now, at 46, I wanted to meet people just like me. Instead I saw two floors of pale women in headscarves, and wheezing men with canes or walkers. Yet many of these beleaguered patients were in remission, and all of them, I realized, despite their obvious suffering and my deceptively normal appearance, might outlive me.

Patients are often tossed from doctor to doctor and given little time. I got two doctors. First a fellow came to take my history and examine me. Not a student or resident but a hematologist-in-training rotating through this specialty clinic and serving as a kind of Watson to Maciejewski's Holmes. That was my first impression of the idiosyncratic doctor as he burst into the room, shook my hand and leaned against the sink, his hands empty, his hair tousled, his blue eyes piercing yet not unkind, and began, as though we had long been friends, "So, Mark, tell me …"

He spent more than an hour with me, patiently explaining my options, the history of the disease, the current state of research. Thirty years ago the severe form was always fatal, but now it can be pushed into remission or even cured by a bone-marrow transplant or less risky immunosuppressant treatments. When my mom let slip that I was a writer, the doctor's eyes lit up and he implored me to write a story about scientists, a thriller, filled with intrigue. Not the sort of tale to give a new patient confidence, but that was the best thing of all, not to be treated as a patient.

So wear your ribbons and watch your telethons, but know that your cures might be born in an orphanage like Maciejewski's. And even if they aren't, these doctors who treat rarities deserve high praise for their devotion, whether they save a hundred million lives, or just one.

Schreiber lives in Columbus, Ohio.

NEWSWEEK
Jan 12, 2008

4-Days and Waiting

Kathy sent me off to Houston this last Monday and Tuesday for treatments that started at 7am Tuesday morning. I returned home that evening around sundown. All the tests were completed but the numbers from the bone marrow were not finished. Wednesday you could find me at my local hospital, Southern Hills, with 2 and 2 - blood components until the wee hours this morning.

So, I'm working from my home office today and taking a break from all the running and scheduling. Kathy and I are waiting for a call from Houston to see how my bone marrow tests are looking and what direction they recommend. Some news I did receive is that my blasts cells have dropped from 30% to 20% - it is good news but...don't get too excited...they should be less than 5%.

We'll know more after the doctors have put their heads together and call us. I have the next round of chemo pills setting on my desk; I won't have to travel back for them should I need to begin another regime. I'll have more to this post after the call. JW

6-Day Delay

Well, we took down the Christmas decorations on the 4th as it was predicted to rain for 4-days (I think we got 4-drops on 1-day). But the job is done and packed away for another year. Hope I'm here next year to do it again!
Busy at work with verifying jackpot payouts and preparing for our annual Bingo World in March.
I completed labs, a doctors visit and an overnight stay in the hospital for 2-blood and 2-platelets units on Tuesday... that made for a short next day. I'm going back for labs on Friday to make sure I'm ready for the trip to MD Anderson in Houston next Monday and Tuesday.
Temps this weekend should be in the 60's and it will feel good to have the house open and welcome in some sunshine - hope your weekend is ideal! JW

Holiday Leftovers

My lab results from last Wednesday indicated that no blood transfusions were necessary this week. I'll return next Tuesday for labs and keep up the blog news.
Meanwhile, I worked a 9-hour day yesterday! One of our casinos is starting 2-games and working all the kinks out has taken some doing.
Kathy and I canceled dinner (for the 3rd time) last night. The hostess, Greta (we know each other on the phone now) said just to call any day rather than trying to set something up in advance.
Christmas week was busy and full of family and friends. January will be a little lonlier. I will miss having family around. Our goal is to get Julye and our newest grand daughter out here for another visit. Mom & Dad, Tony & Billie, Shawn and of course Laura and her family coming to LV March-April-May.
I travel to MD Anderson on the 14th of this month for tests on the 15th. I will be making this a 2-day trip this time rather than an 18-hour day.
My best friend, wife and care giver, Kathy is not doing well and is seeing the doctor this morning. I've probably finally worn her out- I'm told I'm very needy. Maybe some good rest and warm thoughts from our friends will help get her back on her feet. JW