Day Plus Three

Today is Saturday, I talked to Jody and she reported feeling good. The topic of the hour was what to order for breakfast; after discussing her options and changing her mind several times, Jody settled on an English muffin, a scoop of eggs and last I heard a bowl of prunes (she changed her mind several times). If you have not noticed by my posts, food is almost all consuming, it is up there with keeping the room perfect... everything in its place. I know every one of you who has worked the galley with Jody knows exactly what I mean. You probably have asked yourself on one of those long cross-country flights, "is Jody like that at home". I am here to confirm to you she is!

Jody's CBC count has dropped over the night and around 2:00 am they gave her a transfusion. This typically  take six hours to infuse. This is nothing to be alarmed about, it is to be expected. Jody has not begun to make her own blood cells yet, that will come when the donor's stem cells are awakened. It will be at least two-weeks, so Jody will be getting transfusions as she needs them.

I am planning on staying home for a while. Pam Menzer called to tell Jody she was going to stop by, so I will hold off and let her have some time with Pam.

Nothing more to report, I arrived at the hospital around 5:00 pm in time to spend some time with Pam. After some laughs and great conversation Pam left. Jody asked me to spend the night so she could wish me happy birthday first.

I thought I would lighten things up a little with the quote of the day. You may not have dropped a lamb but I know you dropped something in the kitchen.

"Always remember: If you're alone in the kitchen and you drop the lamb, you can always just pick it up. Who's going to know?"

- Julia Child

Day Plus Two

I went home yesterday and spent the night to catch up on my sleep, here it is Friday morning and I do not feel like I slept at all. Makes no sense... Jody and I talked last night on the phone and she reported she was feeling fine. I have some errands to run this morning and will be at the hospital sometime after lunch.

Today, I want to talk about love. Since I met Jody (February of 2007) I have learned so much about love. I told Jody from the very beginning I was just a guy. My name on Match.com was "Just a Guy". Nothing special about me. Guys can be insensitive, clueless, say and do the wrong things. With us (guys) there is no hidden meaning. On the other hand women (this includes Jody) are different. When something is said, they immediately go into the analysis mode. "I wonder what the person meant by that?" Or, "I can't believe they said that"... "I am afraid I said something wrong and hurt her"... With guys we are too slow ( I would say stupid but that may offend someone... how about can't think fast enough) to bury any hidden meaning in anything we say or do. If we want something we just lay it out there (the opposite sex or persuasion know what I mean; to be PC ). We (guys) can make a guy-friend today and not talk to them for years and when we meet the friend again; we start where we left off. With Jody her love is unconditional and she has taught me what unconditional love is and how to express it in simple ways. She thinks of everyone first before herself. (This is just one example...) Before we went to the hospital she bought all the birthday, anniversary, and special occasion cards she would need for all of 2010. "Jody you are going to the hospital for a stem cell transplant, everyone will understand when they do not get a card... Give me a break!" At first, I thought she was a nut case (OK, maybe a little crazy... everyone who knows Jody can appreciate what I am saying), but I have thought about it the last few days. "I have had this realization come over me." I have come to understand... she really loves you guys and by loving you it gives her a feeling of being loved, a sort of inner calm. "She knows you love her, she knows I love her... but by her giving love, keeping you in her thoughts and truly caring for you... Jody feels loved" She and I cry frequently, I usually cry because she is crying. She cries when she talks to you and she cries when she thinks of you. It is not because she has any pain and it is not because you said anything wrong. It is just simply love!

So if you call and she starts to cry, let her cry, she can not find the words to tell you how much your love, your call, your concern and your thoughts mean to her, because she truly loves you. I must also say (now that I have learned) that it means a lot to me too. There is an inner joy that comes over me when I hear her laugh watching an old western show, or hum a song from an old musical she found on TV, and when I hear Jody say "I love you" or hear her cry when she talks to you.

OK, I am off the sappy stuff. I am getting ready to head out. Need to drop off an alarm clock at Joe's, pick up some odds and ends and head to the hospital.

I arrived at the hospital about 4:00 pm. Jody was talking with her friend Pam and using hand motions to direct me to pick up her room. I laid out for her a selection of candy bars, power bars and cheese; all had been approved before I brought them in. She grabbed the string cheese and devoured it immediately. The hospital food as you know, can be a bit of a challenge.

Jody's ANC actually went up over 2,000. In checking with the nurse we were told this is normal after the transplant. Jody looked great and continues to tolerate all of the medicines. They tell us to expect her ANC to drop drastically over the nest few days. When this happens Jody's energy level will crash.

We eat dinner together at the table. Jody had a soft ball size scoop of tuna (not tuna salad... she can't have lettuce, green onion, etc) the same size scoop of egg salad (not sure it was egg salad, but they said it was) and several saltines in those individual size bags that seem to always taste stale. I had a piece of Talapia fish cooked in a butter wine sauce with a spicy salsa made of tomato, cilantro, jalapeno and lime juice and a side of turmeric rice. It was delicious (yea right!), and the company was great. After dinner we watched TV and relaxed. I left around 10:00 pm after she received all her medicines and the DREADED shot.

"The greatest degree of inner tranquility comes from the development of love and compassion. The more we care for the happiness of others, the greater is our own sense of well-being."

Tenzin Gyatso, 14th Dalai Lamat

Day Plus One

Good morning!

Last night was exciting. The anticipation was harder than the actual transplant. Jody tolerated the transplant and had no problem. The anxiety, along with waring off of the excitement of the transplant wore both of us out and we fell asleep around 12:00 am. The nurses, who kept coming in to check on her, said we were both snoring.

Jody and I awoke at 6:00 am and she decided to take a shower. Everyday Jody has to set goals, today's goal is to walk twice today and improve her food intake. She has lost close to six-pounds since we arrived.

The next couple of days will get harder as she continues to drop her ANC levels. Today Jody bumped up a little bit due to the transplant and some steroids. She is surprisingly tolerating everything pretty well but the inevitable sickness and loss of hair is coming. Things should start getting rough around Monday so today should be a good day to call, text or email. I know Jody will be excited to hear from everyone. Also feel  free to leave your comments on the blog. Jody reads what I write everyday... she has become a critic but I will not allow her to edit my reports... so it is all me.

We were fascinated to learn that Jody's blood type will change to her donor's blood type which is AB positive (Jody's blood type was O negative). They expect the change to occur in about a week.

Dr Brunvand stopped in to say he was excited about all the progress Jody has made. Everything was going precisely to plan. They are watching her creatin levels very closely and would be giving her some Lasix fluid, which will cause her to have to go tho the bathroom more frequently. (I did not KNOW that was even possible, Jody might want to move her bed into the bathroom.) The Lasix fluid will help her kidneys function better and thus lower the cereatine in her blood. (Creatine is a waste product put out by muscles and is filtered from the blood passing through the kidneys and eventually expelled. A high creatin means your kidneys are not working efficiently.)

I left the hospital at noon today to catch up on things at the house. Like paying bills, watering the garden and something called sleep. As a result I was a little tardy getting the blog caught up.

"Yesterday is gone. Tomorrow has not yet come. We have only today. Let us begin."

Mother Teresa (1910–1997)
Macedonian missionary
Nobel Peace Prize winner

Day Zero "Its Jody's Birthday today"

Today is Jody's birthday, well not her real birthday but it is her birthday in cancer world. It is the beginning of a new life... Jody will receive her donors stem cells today. They are estimating the stem cells will arrive here late afternoon and go straight to the lab for processing.

We are so grateful to have a donor and are honored to receive his love. Without his love of mankind, and sacrifice of time and comfort we would not be here today. It is with great grace we accept his gift of love. We hope to someday meet our donor and thank him personally. This brings me to our quote of the day below.

I decided to stay last night, to be with her in case she was sick, so I spent the night. Jody did fantastic! She did not get sick once. During the night we had several runs to the bathroom, but no nausea. HOORAY! Sleep is a fleeting thing here at the hospital all night long there are blood draws, vital checks and alarms going off as IVs stop, start and get restarted. But we did get a good night of sleep, whatever that is...

Her ANC, which is a measurement of her immune system has begun to drop. The ANC measurement is a compilation of her blood cell counts. When Jody first arrived it was over 5,000. Steroids bumped hers up to 7,000. The immune system is what fights viruses and other diseases and the chemo drugs are used to kill the blood cells the are a major component of the immune system. Jody's ANC has been staying up, but last night began to drop significantly. Jody is now down to 1,760. At this level Jody will be required to wear a mask and stay behind the two air-lock doors in the hallway that cordon off the ward she is in from the rest of the hospital. Jody's ANC will continue to drop the rest of today and will be down to zero soon.

Jody has had a nice day, no sickness or bouts of nausea. She has had two walks in the hall for her exercise and she has eaten some of her dinner. I went home to get the mail, do some wash and check the house. I returned to the hospital by 5:00 pm.

At 7:30 pm there is a nurse shift change. Jody loves all of her nurses, but has grown especially close to Julie who will be her RN tonight. Julie will help prepare Jody for her donor's stem cells. Anxiety is high as we wait to hear about stem cells arrival. We were told earlier today that the courier's flight was delayed. Around 4:00 pm we were told the cells were in transit and at 7:30 pm we were told they were in town but delayed at the airport. They would begin her prep drugs at 8:30 pm and she would receive the donor cells an hour later at 9:30 pm. As I write  this post it is 8:45 pm and we have not begun any preparation.

I should explain that the stem cell transplant is special for the BMT team and patient. As I mentioned, it is the beginning of a new life for Jody and we celebrate it as her birthday. IV bags are hung from a pole and the nurses and doctors insert a straw shaped plastic tube into the bag to deliver the drugs to Jody. The act of placing the tube into the bag is called a stick. The doctor, nurses and technicians will all be present when the doctor sticks the bag of donor stem cells and begins the IV. I will tell everyone how it went, when it occurs... I am back... I took pictures of the event and will post them later today.

The cells are here and we have begun the process... it is now 9:00 pm. At 9:45 the donor stem cells were delivered into Jody via her IV. Everything went great. It will take about an hour and a half to infuse. They wanted to infuse at least six million cells and no more than eight million. They were excited to discover that a little over ten million cells were harvested from the donor. Based on Jody's weight they decided to give Jody seven million donor stem cells and freeze the balance for her if a second transplant is needed.

Here are some of the pictures

This is Julie and Jody. Julie will be the on duty nurse for the transplant.

The Igloo cooler has arrived

Doctor Gregory sticking the donated donor stem cell IV bag

Our jaws dropped open, right after this picture Dr. Gregory dropped the bag. Everyone stopped and stared, but fortunately everything was OK

The transplant was in progress!

Actual label from donor's stem cell donation

Label from the stem cell bag.

The exact time the stem cell transplant started

I am going to spend the night and will be back with you tomorrow. Thanks for all of the love and support.

"Grace means more than gifts. In grace something is transcended, once and for all overcome."

"Grace happens in spite of something; it happens in spite of separateness and alienation."

"Grace means that life is once again united with life, self is reconciled with self."

"Grace means accepting the abandoned one."

"Grace transforms fate into a meaningful vocation. It transforms guilt to trust and courage."

"The word grace has something triumphant in it."

Yrjo Kallinen

1886 - 1976

Finnish Humanist

Day Minus One

Day minus one, our day of rest. "NOT".

Last night Jody talked me into spending the night. I slept in a recliner next to her bed. Jody completed her last infusion around 10:30 pm and was tired. We watched the news, both of us dozed off and on and then turned the TV off after watching the first two guest on Jay Leno.

Around 2:30 am I heard Jody groaning, her breathing was labored, and she felt clammy. She woke up about 3:00 am and told me she was freezing. I pulled her blanket up around her, when  she told me she needed to use the bathroom. She raced off to the bathroom and became sick. I notified the nurse, who came immediately and calmed our fears. She (the nurse) explained the ATG drug was accumulating in her system. Even though Jody did not react with her first dose the drug can effect her as it builds up in her system. Jody was running a temperature of 103, so they packed ice bags around her and gave her some steroids and Tylenol. She eventually fell back asleep exhausted.

We woke around 6:00 am totally wiped out. The nurse told us Jody will begin taking Tacrolimus (TAC). The drug we have been taking for the last two days is called ATG. ATG is a serum made from rabbits and distracts her "T" cells when the donor cells are infused. It will help Jody to accept the donors stem cells. TAC is put into her system to tell the donors stem cells to remain dormant when they arrive. Jody will begin to be infused with TAC at 8:00 am this morning and it will be given to her continuously, 24-7 over the next three weeks. The TAC will then be backed off slowly to bring the donor stem cells to life. Then we will be watching for the "graft vs host" (known around here as GVH) disease to appear. In addition to TAC, Jody will get another (her last) 6-hour infusion of ATG at 4:00 pm this afternoon, along with several other cocktails of drugs to prevent side effects and nausea. So much for a day of rest. The good thing is we are done with the chemo.

Jody and Ross

This is a picture of Ross and Jody. He is one of her favorite Tech's he discovered a way to make Jody's bed, they way she liked it.... sheets tucked in on all four corners, nice and tight.

Around noon I seized my opportunity to go home. Jody was taking a nap... I went home showered, shaved, talked to some of you on the phone and returned to Jody around 4:00 pm, just as the ATG arrived. We eat dinner together, she had chicken fingers and mac-n-cheese (eat a couple of bites) and I had a burger. Jody's appetite was tempered by her fear of being sick again.

"You desire to know the art of living, my friend? It is contained in one phrase: make use of suffering."

Henri-Frederic Amiel

(1821 – 1881)
a Swiss philosopher

Day Minus Two

Monday is supposed to be a high of 92 degrees, and partly cloudy here in Denver. I am tending to the garden and enjoying my morning here at the house.

Jody called to tell me she took her shower and ordered breakfast. Her BMT team has done their rounds and have checked her vitals and posted her blood count. (They have a chart they maintain on her wall everyday showing what her blood count is for that day.) Jody will be getting the double chemo treatment again today including the ATG, so it will be a full day connected to the IV pump.

Her biggest fear is to receive shots and it appears her left leg is swelling and giving the BMT team some concerns. The left leg is where she had her blood clot, which caused our last two episodes at the hospital. Jody may need to get LOVENOX® to help reduce her risk of developing blood clots. LOVENOX® alters the blood’s normal clotting process, so clots can’t form as easily. LOVENOX® has to be given as a shot to the stomach. She is telling the doctors "That it (the shots) is a deal breaker, I am out of here!" RIGHT...SURE... We will just pack it in and go home... I am sure this will be a subject of discussion all day today (everyone knows how Jody latches on to a subject, and it seems to never go away... never ever ever never). This brings me to my quote of the day COURAGE (see below).

Dr. Brunvand stopped by, it appears Jody totally scared off the PA (Physician Assistant) when she (the PA) suggested the LOVENOX®. Jody will be getting a shot once a day. ARRRRGGG! not a happy camper. I am beginning to feel sorry for the nurse who has to deliver the shot.

Last night Jody slept very well. She is convinced it had to be the bed making expertise of the BMT technician Ross. I will post his picture here shortly.

Jody ordered a baked potato for dinner and I ran down to the cafe'. It is a lot easier to decide what you want when you can see it. Jody on the other hand is always surprised. Jody's baked potato arrived early so she waited for my return to opened the lid to her plate. We both stared at the plate in amazement... maybe it was the anticipation... I rubbed my eyes... The potato was the size of a large egg with a table spoon of bacon alongside. Piling on the sour cream gave the potato some mass. Poor thing... she decided next time she will ask for three or four potatoes. My hamburger was delicious....

More to follow...

“What makes the dawn come up like thunder? Courage!”  

Cowardly Lion
from The Wizard of Oz (1939)

Day Minus Three

Its' SUNDAY, SUNDAY, SUNDAY...

We are now into "Day Minus Three". Today Jody will get the double dose of chemo, as well as a few assorted other drugs to prevent the inevitable nausea. Jody remains positive, although last night before I left she got a little melancholy. I got a little "sappy" too. We both have to keep working on the "positive" and draw strength from all your prayers, love and "good" thoughts you are sending Jody's way.

Jody laughing it up with Heidi

Jody is making lots of friends here at PSL. Her most recent is Heidi, she is her day nurse today. Heidi is going to be giving her the two chemo drugs today Fludarabine and Busulfan along with an assortment of other drugs. (FYI you can click on the pictures and it will zoom in, or enlarge the picture). If you look to the right of Heidi you can see the drugs Jody is getting. The ATG drug is used for anti-rejection. They are trying to condition Jody so she can receive the foreign stem cells on Wednesday, "Day Zero".  The ATG will take six hours to infuse. They give it to her very slowly and have to wait 24-hours before the next dose on Monday and Tuesday.

We decided since Jody was doing so well that today might be an opportunity to bring her dad by to see her. So I picked him up at the nursing home around 11:00. As we came off the elevator we could hear Jody greeting people in the hall. Anyone who knows Jody, knows she will have every ones name rank and serial number before she leaves. 

Tom, Jody, and Joe... notice the gowns?

Here  we are... I tried to remove some of the redness from Joe's eye, so that's me not him with the white spot in his right eye. Joe has Macular Degeneration and has lost his sight in one eye and can see fair out of the other eye. Still gets around great (for those who do not know Joe, he is 95 years old and still very sharp). He is very ardent about knowing what Jody is going through. One day he took me aside to tell me Jody was getting a bone transplanted into her neck. He elaborately described how they were going to take the bone out of some guy and put it in Jody's neck to make her better and cure the cancer. I agreed with him and gave him a big hug.

Jody got her first dose of Busulfan around 10:00, which took about three hours to infuse. This was followed  up with a 30 minute dose of Fludarabine. We started the ATG around 4:00. She sat at the table and eat dinner "chicken fried steak" with carrots (Remember this was supposed to make her sick... it did not phase her). Jody is doing quite well and tolerating the drugs she is being given. They say she will hit the wall somewhere around "Day Plus Five" then again she might sail straight through. Everyone reacts differently.

I finally left the hospital around 11:30.... so that's it for today

"The optimist sees the rose and not its thorns; the pessimist stares at the thorns, oblivious of the rose.

Kahlil Gibran (1883–1931)
Lebanese writer and philosopher

Day Minus Four

Last night Jody did not get her first dose of chemo until after 11:00. The reason was due to the delay of her insurance approval and miscommunication with the hospital pharmacy. We were both getting a little anxious to get things started.

It took about 30 minutes to infuse through her IV. Beside the chemo Jody was also given a second drug. The Busulfan's (the chemo drug Jody will get on "Day minus Three" and "Day minus Two") side effect is seizures (not very common) so they want to be cautious and build-up a anti-seizure drug in her system. Today Jody will get her second dose of Fludarabine... probably around 5:00 this evening.

I did not get home until close to 1:00 last night... collapsed in bed and was back up at 6:30. I am going to collect a few things Jody needs and head back to the hospital by noon. Jody is doing well, the chemo made her a little dizzy last night, but other than that she is doing great.

Arrived at the hospital around 12:00. Jody is in great spirit. Her HCT had dropped to around 24, so she need two units of blood. We ordered lunch and ate, while she completed the transfusion.

Jody took her first shower, since arriving in the hospital. It always seems to invigorate her. After the shower Jody had her dressing changed from around her CVC. The CVC looked very good and she has begun to heal. The skin will grow around her CVC line. The line can remain in her chest for several months. As a caregiver I will be trained how to keep the line clean.

I have been asked to post Jody's address here at the hospital along with her room's phone number. Please keep in mind she is in a sterile environment, so do not send flowers or food. She can receive cards and letters, but do not put anything in the cards that could have germs (do not send anything if you are the least bit sick, Jody will not have any immune system for at least six months), dust or pollen on it.

Presbyterian/St Luke Hospital
Room 3304
1719 E. 19th Ave.
Denver, CO 80218

Room phone number 303-869-1514
She has her cell, which is 973-698-7794
and the email is jodydehner@comcast.net

In today's Denver Post there was an especially poignant news snippet...












Jody all ready has two best friends Laura and Jill... They are her two BMT transplant nurses that try (I really do mean TRY) to take care of Jody. We all know how much Jody likes to be taken care of... Jody has discovered they are both from Minnesota... Laura has a boyfriend and Jill just had a baby. I am sure she will get their birthday shortly so we can add them to the birthday card list.

Laura, Jody, Jill

I left a little early around 9:30, to catch on on my sleep. See you tomorrow.

“I love getting up in the morning. I clap my hands and say, 'This is gonna be a great day.'”  

  Dicky Fox
sports agent in the movie "Jerry Maguire"

Day Minus Five

We awoke at 5:00 am. Jody reported she did not sleep well, I too struggled. Today Jody will be getting her Central Venous (CV) Line inserted and her first dose of chemo.

We plan to leave for the hospital around 7:00 am. I will post more this evening to let everyone know how things are going.

The CVC is in and we have settled in our room. We have had a short meeting with our BMT team doctor on duty, Dr Gregory. She told us everything was going great... except the insurance company had not approved the treatment protocol... a mere formality we are told. "WHAT?" I will let you know how this turns out. They can not start the chemo until they know what protocol they will be allowed to use.

Just ordered lunch... she is decorating her room... moving furniture... placing pictures. It is just like home... without all the flowers and chickens.... AHHHHH!

Good News! (got the news at 5:00) The insurance company has approved the protocol... It is full speed ahead... We will be starting chemo about 7:00, so we are planning dinner in (in the room of course...)

They gave us our training on what to expect... Jody should be able to tolerate the chemo for the next 10 days. So feel free to call or email from "Day minus Five" until Day plus Five". "Day plus Six" she will be expected to hit bottom. I will let everyone know how she is feeling.

Here's Jody! All settled in

“What we obtain too cheap, we esteem too lightly: 'tis dearness only that gives every thing its value.”  

 Thomas Paine (1737–1809)
American political theorist & writer

Day Minus Six

We again are looking forward to a beautiful day. Jody is making plans for all the things we have to do. This is the last day, before we take Jody to the hospital. She is thinking about everything she needs to pack. We are planning to run by RMCC in Aurora to get a picture of Dr.Faragher and his staff. We have made lots of friends there at the clinic and Jody wants their pictures on the blog too.

I will post more this evening... Love to everyone and thanks for the prayers, you have all got us this far. The game is about to begin.

Here are the results of our Rocky Mountain Cancer Clinic visit. Jody's hematology team. The greatest group of people we know. They have supported us through the entire process with their love and expert training. We love them all.

Nardine, Jody, Dr. Faragher, and Amanda

Jeannie, Charisse, Jody, Linda, and Ashley

Jody, Yuyum, and Lenore

Jody and Jerome

Rich and Renee

Candice and Jody

Jody and Lynn with her 4 month old Akita... Everyone knows how Jody loves dogs...

I think the staff at RMCC were glad to see Jody and I leave as we hugged everyone in the building. I think they were afraid she would start going after  the patients.

Some friends stopped by; Mike and Ray our neighbors and my fellow caregivers, Jim and Briana from across the alley. They all wanted to wish Jody well.

I fixed dinner at home and we opened a bottle of wine. For some reason the wine was the best we have ever had, we thoroughly enjoyed our time alone. 

“The rung of a ladder was never meant to rest upon, but only to hold a man's foot long enough to enable him to put the other somewhat higher.”  

Thomas Henry Huxley (1825–1895)
English biologist and educator

Day Minus Seven

Today is Wednesday and we have decided to do nothing... I am catching up on the blog and Jody is gardening.

I will let you know if anything exciting happens.

Nothing Happened!

It was a beautiful day here in Denver, low 90's and an occasional cloud drifting by. I caught up on some paper work and a couple of "to do's". Jody worked on addressing her August birthday cards, gardening, ironing and talked on the phones with some friends.

"I was taught that the way of progress is neither swift nor easy."

Marie Curie (1867–1934)
Polish-born French physicist and chemist
two-time Nobel Prize winner

Day Minus Eight

Today is Tuesday and we have our appointment at RMCC to sign all of the releases and meet with the BMT team leaders to discuss the risks vs benefits. In addition, we needed to be early because I have been asked to be a part of a "Caregiver" study. ( My thoughts are, they may known who I am dealing with... )

The University Hospital has received a grant to study the health of caregivers who take care of cancer patients. They want to measure how the stress affects the health of the caregiver, and to see if the help they provide improves the well being of the caregiver. There will be two groups; one that gets all of the support including counselling and breathing techniques, and one that gets support but not all the special attention. They chose the caregivers at random, so I have no idea what group I will be in.

We arrived at 1:30 for our caregivers meeting on the first floor to sign consents and hear what I will be doing for the study. We went up to the third floor for our meeting with the BMT leaders, Dr Brunvand and his scheduler/assistant Pat Wagner.

After checking Jody's weight, vital signs and drawing blood samples we met with Dr. Brunvand and Pat Wagner. We were told Jody will be part of a research study, which measures the success using the protocol Dr Brunvand has chosen. Jody is part of a group in the single digit thousands who have Myelofibrosis. They want to know how successful each protocol is in curing or extending the patient's life, and/or their quality of life. Even though this procedure has been done over 200 times before, each condition is different. Age, health condition, male/female, attitude, and disease progress are just a few varying conditions.

The really GREAT news is... On a scale of one to ten points (ten being the highest risk factor) Jody is rated at "One". Each point equals 5%, This means Jody's chance of surviving is 95%. She has a 60% chance of being cured of her disease long-term. There is a slightly higher risk (higher than the general public) that she could relapse or get another type of cancer.

Jody's cure depends on how well the stem cells graft into her bone marrow. The BMT team is confident they have chosen the best protocol to make this happen successfully. There remains a chance that her body will reject the foreign cells.

In exchange for being cured she will be getting another disease called "Graft vs. Host" I discussed this in an earlier post. Her immune system will be from her donor and the new immune system will look at her entire body as being foreign and try to attack her. She will be on anti-rejection drugs for the rest of her life as well as have take extra precautions to avoid germs and viruses.   

For those who have not read my information on her disease I am including a link below....

 What is Myelofibrosis

Day Minus Nine

Today is Monday and we have nothing planned except dinner with Jody's dad, Joe. I got up early around 5:30 as I usually do and Jody slept in until almost 9:00. We (she) decided to go shopping. After the usual two to three hours of preparation we were off.

We returned home around 3:00... fun was had by all. I caught up on some bills and we took off to pick up her dad at Saint Andrews. We went to our favorite Mexican restaurant Senior Ric's. I am including a picture of us at the restaurant below. We had a great time!

After several attempts to get Joe smiling this was the best we could do. He REALLY did enjoy dinner with us. Jody really loves her father and is having a hard time adjusting to not seeing him for awhile. I will try to bring him to see her in the hospital depending on his health and whether she wants a visitor.

Day Minus Ten

Today is Sunday July 18 and we are at "Day Minus Ten". Before I tell you what we did today I want to go over the "Schedule"

We received our work-up schedule on Thursday last week. During our "Caregiver" class we learned about "Day minus one, two, etc". They count the days up to transplant as minus. They consider your transplant day as your birthday or "Day Zero" then every day thereafter is "plus".

Sunday	Monday	Tuesday	Wednesday	Thursday	Friday	Saturday
July 18 (Day-10)	July 19 (Day-9)	July 20 (Day-8) 2:00 check-in RMCC for physical and sign consents with Dr. Brunvand, BMT Specialist	July 21 (Day-7)	July 22 (Day-6)	July 23 (Day-5) 9:00Admission to PSL hospital Insert Central line and begin chemo treatment. Fludarabine	July 24 (Day-4) chemo Fludarabine
July 25 (Day-3) chemo Fludarabine and Busulfan	July 26 (Day-2) chemo Fludarabine and Busulfan	July27 (Day-1) No chemo day of rest to metabolize chemo... Harvest stem cells from donor	July 28 (Day-0) Transplant stem cells to Jody, probably late evening. "Birthday"	July 29 (Day+1)	July 30 (Day+2)	July 31(Day+3)

I will begin posting daily starting with "Day Minus Ten" and go through "Day Plus Three" then go back to weekly posts "Week Plus One" and so forth. From "Day Minus Five" through "Day Plus Five" will be the toughest on Jody, so please watch the blog for updates. Today's post will be a little longer, but the following days will be shorter. I hope to simply to let you know how Jody is responding.

We were faxed Jody's protocol today. Jody will be given Fludarabine (floo-DARE-a-been) the trade name is Fludara®  it is an anti-cancer chemotherapy drug. The drug is used for Treatment of chronic lymphocytic leukemia (CLL) and acute leukemia. In addition she will receive another chemo drug called Busulfan (byoo-SUL-fan) the trade names are Busulfex®, Myleran® (Myleran is another name for busulfan). Busulfan is used to treat chronic myelogenous leukemia (CML) and is also used to treat other certain blood disorders. The primary use in Jody's case is a conditioning regiment prior to her bone marrow transplant. She will receive both drugs through her IV.

As you can see by the above calendar she will receive the bone marrow transplant on Wednesday. This date is designated by her BMT team as her birthday. "She will be re-born with the donors stem cells."

As I mentioned in the beginning, I would tell you about our day. We went to church, had breakfast, went to a street art festival and then to dinner at Ling and Louies.

Jody and I found a beautiful Catholic Church nearby the hospital called Saint Ignatious. Being catholic, I wanted to go and Jody decided to go with me. We attended the 7:30 mass. The church was beautiful and everyone came up to greet us. We said our prayers took in the solitude and really enjoyed ourselves.

Following church we decided to go to Boulder for the Art Festival, but before we stopped off for breakfast at "The Original Pancake House". Jody had a big old stack of pancakes.  We had a really nice day, shopping and looking at the art and jewelery.

Week Fifteen

OK! so it is week fifteen... The only thing medically planed is a "Caregiver" class on Tuesday, a CBC on Wednesday... Oh yes! and another haircut on Friday.

I have lots to tell you... Last week, on Friday the BMT team was supposed to meet and decide on the treatment schedule and get back to us. Also the donor's blood was being tested and crossed matched with Jody's blood samples (see "Week Twelve"). Well, the cross-match happened but the meeting did not. So the meeting was re-scheduled for this week.

The donor's blood was cross-matched with Jody's to be sure there were not any surprises as well as tested for any disease. We have not heard if there were any problems, but no word is good. We are planning to call on Monday.

OK, so Sunday was kind of a kick-back day... we did nothing after Kim left.

Monday, I busted my butt to catch up on all the paper work. I want to have the desk clean on all the co-pay claims submitted and hospital bills paid. I was so successful at catching up that I crashed on Tuesday. I felt like blah... I woke up early as usual with Jody, got dressed, eat some breakfast, and laid back in bed until I had to get up to go to the "Caregivers" class.

Pam Menzer (a fellow flight attendant), who came out to Denver with Jody back in 2006 along with our neighbors Michael Roberts-Rodriguez and his partner Ray Rodriguez have agreed to assist me as a caregiver for Jody. We all, including Jody went to the caregiver class at the Rocky Mountain Bone Marrow Transplant clinic. We learned what would be expected of us and all the support that was available to us. Following the meeting Jody and I took them (including Pam's husband, Rob) out to dinner at the "Twisted Olive". Taking care of Jody will have to be a team effort, and I have a great team willing to help.

Wednesday morning we had our weekly CBC at RMCC. Her HCT and Hemoglobin had dropped to borderline needing a transfusion. (I will not bore you with the numbers, but her ability to carry oxygen is getting weaker) After some discussion it was decided that we needed to hold off as long as we could. Getting blood transfusions increases Ferritin and weakens her liver's ability to process toxins.

We came home to find a beautiful flower arrangement at our door. The flowers were a gift to us from Jody's friends Carolyn and Alma (see "Week Eight and Nine"). The flowers were from their favorite flower shop in Kauai. Jody is giving the Hawaiian sign for "no worries". Thank you Carolyn and Alma, we both love you!

Jody and I also received the "Schedule". I will explain the "Schedule" in a separate post.

On Thursday we decided to have a picnic in the park. There is a park near the hospital where Jody will receive her transplant called "City Park". It has a fountain near the Natural History Museum and a beautiful lake. We have a park bench we like to sit at and watch the geese, ducks and people.

On this day we packed our lunch and a bottle of wine, found a shade tree to sit under, and enjoyed the entire day with nothing to do. We arrived at the park around noon and did not get home until after seven. We held each other, read our books, cried a little and talked a lot. Oh yeah, and took a little nap and thoroughly enjoyed the day relaxing together.

As I mentioned at the top of this post Friday was "Haircut" day. We had several errands to run... like BUY ALL THE BIRTHDAY CARDS SHE WILL NEED THROUGH THE REST OF THE YEAR. I think everyone knows she rarely misses your birthday. So this obviously had to go on the Hallmark easy payment plan... just kidding.

To the left is the team of professionals, (left to right) Mollee is the pedicurist/manicurist and Joy is the hair stylist and in the middle you have Jody with the completed hair style. I did not get a picture of the feet, not that I did not try. They both have become very dear friends and have helped Jody transition to short hair. Thank you Joy and Mollee.

Of course I had to get my haircut too! So here we are, the almost bald couple.

Saturday, we decided to go out for dinner. So Jody  put on her new "Cold Water Creek" orange dress, matching jacket, ear rings, necklace and of course shoes (you know how women are) and went to Maggiano's Little Italy restaurant. We both enjoyed Bruschetta and Mussels Tuscany along with our cocktails. For dinner she had the Lobster Spaghetti special with Ziti noodles in place of the spaghetti (she does not do well twirling spaghetti) and I had Veal Picatta and capers. After desert and a bottle of wine we were in heaven.

Below I have a picture of us at the restaurant. What a couple!  

To All My Dear Friends

(This is a copy of a card Jody posted at her domicile... She wanted her friends to know why she was not working... In case they had not heard.)

I am sorry I never had the chance to say good-bye to you. I miss all of you very much.

On February 17th, I was diagnosed with a blood cancer named Myelofibrosis. Then on February 20th, while getting ready for a 4 day trip, I developed a severe stomach pain. My husband, Tom, said “You are not going to work”. I was rushed to the hospital with an obstructed bowel, which required emergency surgery. Between February 24th, when I got out of the hospital for the first time, and the first of June I was admitted two more times. Both times were for blood clots and pneumonia caused by my oral chemo drugs, which I was taking for my disease.

I am feeling a lot better now, but I am in need of a Bone Marrow Stem Cell Transplant as soon as possible, before my disease progresses to Acute Leukemia. Fortunately, an international donor was found and I am scheduled to enter the hospital on July the 22nd, at which time I will start high dose chemo in preparation for the stem cell transplant. The transplant will be on the 28th or 29th of July if all goes well.

I will be admitted into Presbyterian/St. Luke’s Medical Center in downtown Denver and will probably be there until the first of September. When I can come home, my husband will be my caregiver for the next one-hundred days, while I rebuild my immune system. I can receive visitors as long as they are healthy and take certain precautions. My husband must be with me 24/7 and can only leave me for forty-five minutes at a time.

Hopefully, after the first one-hundred days my immune system will start to improve. I will still have to remain out of public places for up to one-year except for weekly doctor appointments.

I’d love to see all of you and look forward to hearing from you soon!! One year is going to be a long time to be away from my friends and colleagues!!
________________________________________


Contact information:
Home: (303) 862-9373
Cell: (973) 698-7794


5838 Biscay Street
Denver, Colorado 80249


Presbyterian/St Luke Hospital
1719 E. 19th Ave.
Denver, CO 80218
Please no flowers… I am in a sterile environment…

Week Fourteen

Well we made it through week thirteen. Not much to do this week, so I will update you more next week. That is when I should have more concrete information.

On Monday Jody had her eyes examined to be sure she has the most current prescription. During the chemo treatment phase her eye sight will change and then return to what it was prior to the chemo. During her recovery phase she will not be able to have an eye exam.

Tuesday morning we had her weekly CBC at Rocky Mountain Cancer. We discovered her INR had begun to improve, but not enough so we were told to increase her Coumadin. They were concerned enough that Jody had to return on Friday to see if her INR had improved.

Earlier in the week we became concerned Jody had contracted another bladder infection. So, on Wednesday we stopped off at Dr. Tormohlen to leave a urine sample. We were happy to hear on Thursday morning everything was normal.

I mentioned that on Friday we were told to return to RMCC to have Jody's INR checked and we were happy to learn all had returned to normal. The following morning we returned from the store to hear a dear friend, Kim Allison had mis-connected and was in town on a 20 hour lay-over. She had originally hoped to be in town the following week, but lately the loads (that's airline talk for no open seats on flights) have been heavy and flying standby is iffy at best. So she decided to take advantage of the mis-fortune and give us a call. Jody always has the spare bedroom prepared for any of her friends to visit. We had a great time together sitting on the patio and catching up on old times and what everyone was doing. Jody, Kim and I later that evening went out for dinner at our favorite Mexican restaurant "Senior Ric's". Kim left the following morning (Sunday) to return to Easton, PA.

"Love you Kim for all the love and support you have been sending Jody's way!" Jody has taught me how great it is to have friends like you and all of you who are following my blog. Jody and I love you all!