As we work to create light for others...

Lord, make me an instrument of your peace,
Where there is hatred, let me sow love;
where there is injury, pardon;
where there is doubt, faith;
where there is despair, hope;
where there is darkness, light;
where there is sadness, joy.
- St. Francis of Assisi

Cancer doctor's song hopes to inspire others to "Hold On"

Hold on. I can feel it getting better.

Hold on. Be strong. Can you feel it getting better?

These words of hope and encouragement are found in the chorus of the song "Hold On," written by Greg Lizee, Ph.D., associate professor in MD Anderson's Department of Melanoma Medical Oncology.



Back in 2002, a close friend of Lizee's was going through a tough time. Lizee wanted to cheer his friend up, so he decided to write an inspiring song.

"I was playing this very optimistic-sounding chord progression and thought about putting uplifting lyrics to it," says Lizee. "In just a few days I'd written 'Hold On.'"

The birth of Lizee's songwriting hobby

Lizee first became interested in music at age eight when he began piano lessons. Four years later, he picked up his first guitar.

"I've been in many bands over the years, but just as a hobby," says Lizee. He's been writing songs for about 15 or 20 years.

Lizee isn't shy to admit that his first songs weren't that great. "'Hold On' was the first song I wrote that I could actually listen to again and again," he says.

Lizee draws his songwriting inspiration from his empathy for other people. "When I have an emotional connection to something, the songs seem to write themselves," Lizee says. "Those are the songs I've been the most happy with."

A healing message for cancer patients

Last year, Lizee was approached to contribute to a CD the Department of Melanoma Medical Oncology wanted to create for patients. That's when Lizee remembered "Hold On."

Lizee played his song for a colleague, and he loved it. "I'd never really thought about it before, but the message in the song is applicable to our patients," Lizee says. "I hope they can relate to the message about being hopeful and optimistic."

Lizee lost his own father to cancer when he was only 18. That's what drove him to learn more about biology -- specifically, the immune system.

Now an immunologist and researcher at MD Anderson, Lizee knows all too well that going through cancer treatment is one of the hardest challenges people will ever have to face. But his message is simple.

Hold on. Be strong. It's going to get better.

Mary Jo Update #43 - We are going home!

We went to the clinic this morning for the first since last Friday. Mary Jo's WBC was up to 6.6 and her platelet level was 115. Her potassium and magnesium were maintaining their previous levels without help. Doctor Chin and her nurse practitioner did not seemed to be concerned. Since everything has been going so well with Mary Jo, Dr. Chin is going to release her on Day+25, Friday, May 25th, rather D+30, Wednesday June 5th, as planned.

After the meetings in the clinic, they sent Mary Jo to the cardiovascular clinic for another EKG before we leave. Mary Jo is going to go through her primary care doctor to get an appointment set up with a cardiologist back in Louisville. She had the option of seeing a cardiologist here. But, then we would have to come back to Nashville for follow up visits.

Mary Jo has an appointment on Friday at 8 am to have the trifusion catheter removed. After that, we will have a final meeting with Doctor Chin, the nurse practitoner, and Mary Jo will be released. Her next appointment in the clinic will be around her Day+100 on Monday, August 19th. When we come back then, Mary Jo will meet with Doctor Nishitha Reddy, have a PET Scan, and have a pulmonary function test. Doctor Reddy is the first doctor that we met with at Vanderbilt back in December.

Doctor Chin gave Mary Jo three things to watch out for over the next few months until her next appointment: 1) If she has need for any blood products, to make sure that they have been irradiated before they are infused, 2) To make sure that she continues to take Valtrex for a year to keep her from getting shingles, and 3) He warned her, if she got a dry cough, shortness of breath, or a low grade fever to call her oncologist immediately. It could be an infection caused by the toxicity of the BCNU, the last chemo, that she took before her transplant.

Our 30 day lease on the apartment ran out yesterday. So, we had to extend through Friday. We will actually be leaving Nashville for home on Saturday morning. Mary Jo's nephew, Billy, who has CLL, has an appointment down here on Friday. So, we are planning on hooking up with him, and his friend, Rita, for dinner.

The time down here has passed fairly quickly. The toughest part was when Mary Jo was in the hospital for eleven days. All the staff at the stem cell transplant center have been wonderful. But, it will be nice to be home again.

We have been calling this "Our Vanderbilt Odyssey", and it is coming to an end. But, our odyssey with this most unwelcome intruder into our lives began on October 16, 2009 when we found out that Mary Jo had Mantle Cell Lymphoma. That's when our relationships with oncologists, nurses, blood labs, PET Scans, CT Scans, needle biopsies, bone marrow biopsies and all the other things that cancer brings into people's lives began.

The odyssey took another turn after the cancer changed from an indolent calm intruder to an agressive invasive one which put an end to living any kind of normal life for us awhile. Mary Jo was admitted to the hospital on October 22nd. She was there eight days for her first of four R-CHOP chemo treatments.

We visited Doctor Reddy here at Vanderbilt in December, and she changed Mary Jo's last two chemo treatments to the R-DHAP. After that, we began the preliminary meetings and tests leading to Mary Jo's autologous stem cell transplant on May 6th.

There have been 1321 days since October 16th, 2009 until today, and there have been 219 since October 22, 2012. There have been many changes, twists and turns since this odyssey began, and I am sure someday there will be more. Hopefully, way, way off in the future sometime.

Through all of these changes, twists and turns there have been a few constants that have kept us going. First of all, all of our family and friends who have strengthened us with their prayers. Our faith and trust in the Lord through whom all things are possible, and the love that Mary Jo and I have for each other.

Our hope and prayers are that these stem cells that Mary Jo was given back on May 6th will give her many, many years of remission. But we know that no matter what changes, twists and turns the future holds for us. We know that we will be able to count on those constants that I mentioned above, our family and friends, our faith, and our love for each other to carry us through.

As this part of our odyssey here at Vanderbilt ends, the strength that I have gained from sharing our story with all of you has been immeasurable. I hope that the occasional humor, aggravation, venting, along with the storytelling through laughs and tears has been worthwhile for you, and that useful information has been passed along that might help others walking the path to a stem cell transplant.

I will continue to place information on the blog from interesting articles that I stumble on about Mantle Cell Lymphoma, stem cell transplantation, and treatments for lymphoma and leukemia. I will also make occasional posts about how Mary Jo is doing through the recovery phase of our odyssey.

I don't know how I could say thank you enough for all of your thoughts and prayers. Truly, they shall never be forgotten.

Mary Jo Update #42 - Blessed are those who wait for the Lord!

Mary Jo and I hope that everyone has had a safe and happy Memorial Day weekend. We are in a waiting period until we go back to the clinic on Wednesday.

We are continuing our 30+ minutes of walking everyday. Mary Jo is getting stronger everyday. Mary Jo has always been able to walk faster than me until she got sick. I am starting to have trouble keeping up again-a good sign.

Waiting is not my forte. Without the forward progress Mary Jo is making, it would be excruciating for me. I want to be a person who waits, and one who waits well. Our stay in Nashville is giving me plenty of practice.

We had visitors from home on Saturday. Our daughter, Heather and her family, and my brother, Dan, and his wife, Lynne, came down for the afternoon. It sure was good to see some familiar faces, and who weren't doctors, nurses, patients or caregivers.

Since Mary Jo has been cleared to go out amongst people without a mask, and eat in restaurants. We all went out for lunch together. Dan said that he wanted to eat somewhere unique to Nashville. I think that he would have preferred Prince's Hot Chicken Shack. But, I was afraid that the kids and others wouldn't be able to take the heat at Prince's.

We ended up going to a place out in the country west of Nashville called The Loveless Cafe. You might have heard of it. Loveless' biscuit lady, Carol Fay, has been on TV's Bobby Flay Throwdown, the Food Network, the Cooking Channel and other TV shows. The food was definitely worth the drive. Here's a video from Tennessee Crossroads:



When we got to the restaurant we were told that there would be an hour and 35 minute wait. It so far away from everything else that most people aren't going to drive somewhere else. Someone told us that they exagerate the waiting time. They were right. It ended up being only 45 minutes.

Mary Jo and I went to Mass together at the Cathedral of the Incarnation on Sunday morning. That awas good. With Mary Jo's illness, we have not been able to do that for a long time. Another little sign that our life is slowly getting back to normal.

The message delivered by the cathedral's rector, Father Ed Steiner, struck a chord with me. He said that instead of asking God "Why?, or Why me?" when something happens in our lives. Maybe, it would be more appropriate to ask ourselves "How? How is God working through what has happened to us."

My take on Fr. Steiner's message was God is good all the time, irregardless of our situation in life. God keeps His promises to us, but it's not for us to decide how, when, nor where God works. God ways are not mysterious to God, just to us. Simply put, let go, wait, and let God do His work.



The message reminded me of Robin Robert's reflection on the moment when her doctor infused her sister, Sally Ann's, stem cells into her body:

"The one thing I do remember about transplant day is when Dr. Giralt is standing over me and … I'm looking up at Dr. Giralt, and he's looking down at me, and we're the only two in the room. I don't hear anybody else, I don't see anybody else. I just see Dr. Giralt. And he starts inserting the syringe into a port I have in my chest. And I remember... seeing tears. He has his mask on, but I remember seeing tears in Dr. Giralt's eyes. And I can see that his mouth is moving, and he's saying something," Roberts recalled.

He was praying. "Let God do his work and it will work,'" Giralt explained. "To me, it does capture the real sense of the moment ….The way this finally evolves is a whole joint of events that may be beyond our control, and is in the control of a power above us. And our role is to do the best we can, with the instruments that we have."

Wait for the Lord...a beautiful thing...but, not always the easiest thing

Blessed are those who wait for the Lord!

Dealing with Life's Speed Bumps

By John H. Sklare, Ed.D, Lifescript Personal Coach Published May 27, 2013

How good are you at recognizing and accepting imminent warning signs in your life? Do you immediately identify danger signs or counterproductive thoughts and behaviors, and then take appropriate action to remedy or counter the situation? Or do you tend to ignore these types of ominous indicators and just deal with them when an emergency is at hand?

Your answer could very well tell a lot about how happy and healthy you’ll be in your future life.

For example, let’s say that you’re a smoker and begin to notice excessive coughing, shortness of breath or lack of endurance. Or perhaps it’s your weight that has been slowly increasing and, as a result, you’ve become aware of painful knees, difficulty going up and down the stairs or walking through the mall needing to sit down. These simple examples offer warnings of much bigger and more serious things to come. They are similar to the speed bumps you encounter on the roadway.

A speed bump is a 3-to-4 inch high, man-made obstacle placed on the street to slow down traffic. It does this by first visually getting your attention and then, secondly, by forcing you to take evasive action and reduce your speed. In a similar way, we’re also presented with speed bumps in our lives that warn us of potential for dire consequences.Life’s speed bumps aren’t tangible objects comprised of recycled plastic, metal, asphalt or rubber like the ones you encounter on the road. Instead, they’re an entirely different kind of animal that consists of bodily pain, physical limitation and emotional discomfort.

If you’re like most people, you react appropriately when you see a speed bump on the street and, as a result, slow down so that you don’t do any damage to your car.

In life, however, too many people tend to ignore these indicators of future trouble until it’s too late to deploy an effective avoidance maneuver and take corrective action.

I’m wondering how many of you reading this today are beginning to squirm in your seat as you find yourself identifying with this dangerous type of avoidance behavior.

Have you been given signs of trouble and chosen not to address them? Is there something you’re either doing or not doing that you know isn’t in your best interest, but you continue along the same path anyway? If so, stop ignoring these messages and treat them as you would when you’re confronted with a speed bump on the roadway.This leads me to the primary point in today’s message, which I will put in the form of a question: Is there something that you’re ignoring in your life today that you very well know you should be addressing? If your answer is yes, perhaps you should treat it as you do that speed bump on the roadway. That is to see it clearly, acknowledge it, slow down and take evasive action.

Wishing You Great Health,
Dr. John H. Sklare
Lifescript.Com

How to find a clinical trial

Here's some good information, if you are a lymphoma or leukemia patient, or a caregiver for one. At some point in your journey, finding an active clinical trial could be a lifesaver. Mary Jo and I both feel that a clinical trial here at Vanderbilt using the experimental drug, Ibrutinib, saved her nephew Billy's life. 

Dr. Sharman's CLL & Lymphoma Blog provides a tutorial for finding a clinical trial:

I use the website clinicaltrials.gov almost every day.  It is something I turn to so frequently that I periodically have to catch myself when I explain it to a patient because it isn't completely obvious how to get a good search result.  I thought I would offer a small tutorial. 

The trick is to make a search narrow enough to find what you are looking for without getting overwhelmed by the tidal wave of possible studies.  The second task though is a lot more challenging - figuring out the good studies from the bad ones.  That is a lot harder and often something good to review with your own doc or other patients who are aware of the trial. 

Step 1: Go to the webpage clinicaltrials.gov

Read the entire article from Dr. Sharman here...

Update on Kat: "The end of this hell is in sight"

I just wanted to provide an update on the young lady in London named Kat whom I asked prayers for back in April. Kat was originally scheduled for a anllogeneic stem cell transplant in February. After many complications and lots of prayers, things have started to turn around for her.  Kat received her new stem cells on May 23rd. Here's an except from her blog, The C Word, about her experience:

Now it’s a matter of ‘watch and wait’! Although I’ve now had the physical stem cells, the actual transplant is ongoing. It will take another ten days or so for the actual grafting of the cells to take place. The grafting is basically when the stem cells actually embed in the bone marrow and start creating new blood cells – this is usually the point where the donor immune system starts to replace my immune system. The grafting is a really crucial period as this is where I will be most at risk of GVHD. For a period of three months after transplant I will be on an immunosuppressant drug called cyclosporine, then I’ll gradually be weened off them and it is then I can realistically start getting my life back together again.

Some of you are probably wondering what the benefits of a stem cell transplant is and why I need it. I need it because my own immune system failed and the cells started mutating causing cancer. To stand a chance of a cure, I need to kill off my immune system and adopt a brand new one. The theory is, the new immune system will be healthy and able to identify bad cancerous cells present in my body and kill them off. I can safely say that without this, I stand no chance of life at all. And it’s for this reason that whilst there’s no guarantee that this will work 100%, I will forever be grateful for my donor. I have no idea who my donor is, where they are from and what makes them tick, but they have restored my faith that humankind can be incredibly amazing and kind. Donating stem cells is an arduous tedious process and for someone to do that for a complete stranger makes them a saint in my eyes – I owe my life to them. And although I’m not out of the woods yet, it doesn’t change that. I’m expected to get quite ill over the next week or two from the effects of chemotherapy, radiotherapy and the transplant – it’s normal apparently – but despite that, I can see that beacon which tells me that the end of this hell is in sight. It’s been over nine months now since this fight started and I really do feel like I’m winning it.

Please keep your healing vibes and prayers coming, I still need you guys. The next few weeks will be rocky but I can get through it with your help.

Please keep Kat, and Ade, her husband and caregiver, in your prayers. Kat's journey continues to inspire all of us who have followed her online since September, 2012.



Original post from April 9, 2013

Please pray for Kat

I have been following the blog of a young lady from Hong Kong who lives in London England named Kat for several months.

Kat was diagnosed with a rare form of Non-Hodgkins Lymphoma called Double Hit Lymphoma (DHL) in August, 2012. She went through several months of misdiagnosis and the lymphoma had spread to her brain before it was properly diagnosed.

Kat was supposed to have a stem cell transplant in February, but it was discovered that the lymphoma only stayed in remission for a few weeks, and had reappeared in her spleen and liver. Kat was given a chemo regimen called ESHAP, which her latest PET scan indicated did not get rid of the lymphoma cells. Now, they are going try a regimen called Mini-BEAM.

KAT is a tremendous writer. Her posts whether she is talking about her hope, her desperation, or just trying to find a lighter side to her fight against the DHL are compelling. She also many times provide the reader information broken down about treatments, tests, procedures, etc. so that it is easily understood.

Needless to say Kat, along with her caregiver and huband, Ade, have been on a roller coaster ride since her diagnosis. What Kat has went through would try the patience of any saint.

I have a link to Kat's blog The C Word in the sidebar. Please say a prayer that the Mini-BEAM treatments will get rid of the lymphoma so that Kat can have the stem cell transplant that she so desparately needs.

You can check out Kat's blog by clicking here.

Kat and Ade

Grant That I May Radiate Thy Light, Thy Love, Thy Healing, Thy Joy, and Thy Peace...

Zach Sobiech: "You don’t have to find out you’re dying to start living"

Who is Zach Sobiech? Maybe you heard his story already. But I felt compelled to share it after reading about Zach's death over on eyes peeled,always

His doctors had given Zach a year to live, and he made the decision that he wanted to spend that time with the people that he loved, at home, doing what he loved, which was songwriting and music. His song, “Clouds,” is a bit of a farewell, written knowing that the time he had left was short. Though what he sings about is tragically sad, its upbeat tone and positive lyrical spin demonstrate his zest and appreciation for life, as well as his peace with his impending death.

For anyone to reach that awareness is a beautiful gift, for it to happen for such a young man, even more so. His music video for "Clouds" went viral and a tribute was made back to him with several celebrities who were moved by his story and were filmed singing his song. This humble young man made it known that the solution to happiness really is so simple.



This evening I watched a documentary about him,"My Last Days: Meet Zach Sobiech," Actor/comedian Rainn Wilson was moved by Zach’s story, and created the short documentary about Zach on his YouTube channel, SoulPancake.

It is more than worth the 22-minute watch. Settle in and your life will be changed. Listen to what he has to say. It is hard to watch the video because many of us are able to relate to it on many different levels. He is gone far too young. But it also a joy to watch because he lived such a full life that he could be proud of, and at peace with, in spite of dying from disease. As they say at the end of the film, he touched so many lives not because he was dying, but because of the way he lived. That is beautiful lesson and something we all should aspire to every day.



After battling osteosarcoma from the age of 14. Tragically, Zach succumbed to cancer this week on May 20, 2013 at the age of 18. His hope: “I wanna be remembered as a kid who went down fighting – I didn’t really lose.”

Zach's funeral was held on Thursday, May 23, and hundreds gathered to celebrate his life.. His memory, and mission to help find a cure for childhood cancer, lives on through his inspirational song, "Clouds." According to the Minnesota newspaper Pioneer Press, 1,200 people attended Sobiech's funeral at the Church of St. Michael in Stillwater, Minn. Outside, the church was decorated with balloons that had Sobiech's "up, up, up" lyrics written on the front

The Sobiech family started the Zach Sobiech Osteosarcoma Fund to support research of this rare disease.

Zach touched the hearts of millions and spread joy wherever he went. Through his music, his actions and his simple words, he’s is leaving the world a powerful, resounding message:

“You don’t have to find out you’re dying to start living.”

SoulPancake created a celebrity music video , featuring stars Bryan Cranston, Sarah Silverman, Jenna Elfman, Jason Mraz and Ashley Tisdale, all singing along to Zach's song "Clouds".



Thanks for the song and your spirit, Zach.

Mary Jo Update #41 - Is The Princess Ready For Prince's Yet?

5/24 BLOOD LABS                                         DIFFERENCE FROM 5/21
WBC:  4.6 thou/uL (3.9-10.7)                                                 -.1
PLATELET COUNT:  55* thou/uL (135-371)                       +20
NEUTROPHIL ABS:  1.81 thou/uL (1.60-8.10)                     +.04
POTASSIUM BLOOD:  3.7 mEq/L (3.3-4.8)                         +.1
MAGNESIUM BLOOD:  1.8 mg/dL (1.8-2.4)                        Same

Mary Jo is now on Day+18, and she looks great. The good news kept coming as we went back to the outpatient clinic this morning for blood labs and meetings. Dr. Chin was the doctor on duty again. But, the nurse practitioner was Liz Winkler. Liz was the one who infused Mary Jo's stem cells back on her new birthday, May 6th. Mary Jo calls Liz her cheerleader.

Liz gave Mary Jo the good news about her blood levels this morning, especially her platelet level of 55. Since her platelet level is above 50 now, she can have the trifusion catheter removed. Liz is going to put in a order for cardiovscular clinic to take it out next Wednesday. I think getting rid of the catheter will give Mary Jo a psychological boost, as well as, removing a risk of infection with it in.

Liz also gave Mary Jo some more good news. She said that since her blood levels had stabilized now. She didn't have to be as vigilant about wearing a mask. Liz even said that Mary Jo could eat in resaurants and go in stores without a mask now. We still have a few frozen dinners in the freezer that we'll need to finish off before we leave.

This all is especially good news since our daughter, Heather, and her family will be visiting us tomorrow. We also got a call from Lynne, my brother Dan's wife, yesterday evening. They are going to drive down to visit over the weekend too. It will be good to see some familiar faces again.
Since Mary Jo has gotten the OK to go out to restaurants again, I have been surveying the Nashvillians about restaurants here in Nashville that are unique, and probably not duplicated anywhere else on the planet. The one mentioned the most was Prince's Hot Chicken Shack. Here's what one of the reviews on the internet said about Prince's:

"Grease will soak through the brown paper bag in which your fiery, deep-fried chicken is unceremoniously served. That's to be expected here at this proud but run-down joint in a dicey part of town. Line up at the counter with the diverse local clientele to pick your poison -- mild, medium, or extra-hot sauce? If you need a cool-down, pray you've got enough change for the Coke machine."

And here's a video that I found on You Tube about Prince's:

L

I always half-kiddingly tell Mary Jo that I treat her like a "princess". Which for some unknown reason, Mary Jo never acknowledges on her own. As our days start to dwindle, and since Mary Jo's blood levels keep improving and she can eat in restaurants now. The recurring question will be is the Princess ready for Price's yet? Mary Jo's reply "NOT!"

The last of the good news. We don't have to go back to the clinic until Wednesday!!!

Mary Jo and I wish all of you a happy and safe Memorial Day weekend. We give glory and praise to God for the great progress that Mary Jo has made, for all of you who have blessed us with your prayers, and for all of those men and women who have served our great country, especially those who have given their all!

A Memorial Day Checklist

GOING TO THE GONE
A checklist for Memorial Day

by Greg Asimakoupoulos

Go look in on your children still asleep
within their bed.
Remind yourself they're safe and warm
because of some long dead.

Go for a walk through cemeteries
lined with little flags.
Take time to ponder homebound heroes
flown in body bags.

Go stand between those granite stones
engraved with names and dates.
Imagine all who died defending
our United States.

Go on and kneel beside a marker
offering a prayer
with gratitude for those who gave their lives
defeating terror.

Go home and count your blessings
from the hands of those now gone.
Then vow to the Almighty that their
mem'ry will live on.

-------------------

Also found on Greg's blog:
http://www.partialobserver.com/article.cfm?id=2941

Copyright 2008 Greg Asimakoupoulos. Permission is granted to send this to others, with attribution, but not for commercial purposes.

Greg's great book, "Rhymes & Reasons," is available at Amazon:
http://www.amazon.com/exec/obidos/ASIN/1434841855/mikeysfunnies-20

today'sTHOT============================

The bravest thing you can do when you are not brave is to profess courage and act accordingly.

=======================================

PASS IT ON!
Yeah, you can send this Funny to anybody you want. And, if you're REAL nice, you'll tell them where you got it! www.mikeysFunnies.com

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Ibrutinib phase III trial for patients with mantle cell lymphoma

The following abstract from ASCO is simply giving the details of a clinical trial that is about to enroll patients with mantle cell lymphoma. If you have MCL you will certainly want to discuss the merits of participating in this trial with your doctor. Ibrutinib has been getting some amazing results in recent studies.

A phase III study of ibrutinib in combination with bendamustine and rituximab (BR) in elderly patients with newly diagnosed mantle cell lymphoma (MCL).
http://abstracts2.asco.org/AbstView_132_113203.html

Mary Jo Update #40 - Progress Continues & Other Musings

5/21 BLOOD LABS                                         DIFFERENCE FROM 5/18 
WBC:  4.7 thou/uL (3.9-10.7)                                                +.3
PLATELET COUNT:  35* thou/uL (135-371)                       +5
NEUTROPHIL ABS:  1.77 thou/uL (1.60-8.10)                     -.38
POTASSIUM BLOOD:  3.6 mEq/L (3.3-4.8)                         -.6
MAGNESIUM BLOOD:  1.8 mg/dL (1.8-2.4)                        +.1

Mary Jo and I went to the outpatient clinic today again for blood labs and meetings with Dr. Chin and  her nurse practitioner, Anne Galloway. Her WBC and platelets showed continued improvement. The neutrophil reading dropped a little bit, but maintained a level indicating that her stem cells had grafted. Her blood potassium and magnesium maintain levels that required no supplementation today. A very good report for Day+15. This puts us halfway through the 30 day post transplant recovery phase.

Mary Jo needs to maintain a platelet count of 50 before the trifusion catheter can be removed because of the danger of bleeding when platelets are below that level. The catheter will be a benchmark point in the process for several reasons. The main one is the catheter being connected to a main line to the heart infection can be critical. It is necessary to change the dressing on the catheter ever seven days, and Mary Jo has been taking an atibiotic to ward off infection since the catheter was installed, but as with any opening in the skin it is a place of vulnerability.

Secondary to all of that, it is a pain in the neck. Mary Jo has been taking sponge baths since it was installed. She didn't have much luck keeping the area dry with any of the cling wrap products that she  tried. She figured that sponge baths were better than taking a chance that it would become infected.

Our next trip to the clinic will be on Friday. In addition to blood labs and meeting with the doctor and nurse practitioner. Mary Jo will have the dressing changed on the catheter, and her power port will get it's once a month flushing. Mary Jo is walking 30+ minutes everyday at a pretty good pace. Her strength is coming back, and she doesn't seem to be as winded as she was last week. Exercise is very important part of the recovery process.

I guess it's official. I am officilly a senior citizen now. I was talking to our neighbor, Ginny, who is colecting our mail for us. My Medicare card has came in the mail. I guess that it is a right of passing. Sort of like when I got my driver's license when I was 16, only it's at the other end of the spectrum.

A friend sent me the following about being on this end of the spectrum. It's called "And Then It's Winter". I think the writer is anonymous. You may have heard it before. But, I feel that it was appropriate tonight. I feel blessed to be able to spend the winter of my life with my best friend and soul mate of 45+ years. The love of my life, Mary Jo.

AND THEN IT'S WINTER

You know. . . time has a way of moving quickly and catching you unaware of the passing years. Yet in a way, it seems like eons ago, and I wonder where all the years went. I know that I lived them all. I have glimpses of how it was back then and of all my hopes and dreams.

But, here it is... the winter of my life and it catches me by surprise...How did I get here so fast? Where did the years go and where did my youth go? I remember well seeing older people through the years and thinking that those older people were years away from me and that winter was so far off that I could not fathom it or imagine fully what it would be like.

But, here it is...my friends are retired and getting grey...they move slower and I see an older person now. Some are in better and some worse shape than me...but, I see the great change...Not like the ones that I remember who were young and vibrant...but, like me, their age is beginning to show and we are now those older folks that we used to see and never thought we'd be.

Each day now, I find that just getting a shower is a real target for the day! And taking a nap is not a treat anymore... it's mandatory! Cause if I don't on my own free will... I just fall asleep where I sit!

And so...now I enter into this new season of my life unprepared for all the aches and pains and the loss of strength and ability to go and do things that I wish I had done but never did!! But, at least I know, that though the winter has come, and I'm not sure how long it will last...this I know, that whenit's over on this earth...it’s over. A new adventure will begin!

Yes, I have regrets. There are things I wish I hadn't done...things I should have done, but indeed, there are many things I'm happy to have done. It's all in a lifetime. So, if you're not in your winter yet...let me remind you, that it will be here faster than you think. So, whatever you would like to accomplish inyour life please do it quickly! Don't put things off too long!! Life goes by quickly.

So, do what you can today, as you can never be sure whether this is your winter or not! You have no promise that you will see all the seasons of your life...so, live for today and say all the things that you want your loved ones to remember...and hope that they appreciate and love you for all the things that you have done for them in all the years past!!

"Life" is a gift to you. The way you live your life is your gift to those who come after. Make it a fantastic one.

LIVE IT WELL!
ENJOY TODAY!
DO SOMETHING FUN!
BE HAPPY!
HAVE A GREAT DAY!

Mary Jo Update #40 - Progress Continues & Other Musings

5/21 BLOOD LABS                                         DIFFERENCE FROM 5/18 
WBC:  4.7 thou/uL (3.9-10.7)                                             +.3
PLATELET COUNT:  35* thou/uL (135-371)                  +5
NEUTROPHIL ABS:  1.77 thou/uL (1.60-8.10)                -.38
POTASSIUM BLOOD:  3.6 mEq/L (3.3-4.8)                    -.6
MAGNESIUM BLOOD:  1.8 mg/dL (1.8-2.4)                  +.1

Mary Jo and I went to the outpatient clinic today again for blood labs and meetings with Dr. Chin and  her nurse practitioner, Anne Galloway. Her WBC and platelets showed continued improvement. The neutrophil reading dropped a little bit, but maintained a level indicating that her stem cells had grafted. Her blood potassium and magnesium maintain levels that required no supplementation today. A very good report for Day+15. This puts us halfway through the 30 day post transplant recovery phase.

Mary Jo needs to maintain a platelet count of 50 before the trifusion catheter can be removed because of the danger of bleeding when platelets are below that level. The catheter will be a benchmark point in the process for several reasons. The main one is the catheter being connected to a main line to the heart infection can be critical. It is necessary to change the dressing on the catheter ever seven days, and Mary Jo has been taking an atibiotic to ward off infection since the catheter was installed, but as with any opening in the skin it is a place of vulnerability.

Secondary to all of that, it is a pain in the neck. Mary Jo has been taking sponge baths since it was installed. She didn't have much luck keeping the area dry with any of the cling wrap products that she  tried. She figured that sponge baths were better than taking a chance that it would become infected.

Our next trip to the clinic will be on Friday. In addition to blood labs and meeting with the doctor and nurse practitioner. Mary Jo will have the dressing changed on the catheter, and her power port will get it's once a month flushing. Mary Jo is walking 30+ minutes everyday at a pretty good pace. Her strength is coming back, and she doesn't seem to be as winded as she was last week. Exercise is very important part of the recovery process.

I guess it's official. I am officilly a senior citizen now. I was talking to our neighbor, Ginny, who is colecting our mail for us. My Medicare card has came in the mail. I guess that it is a right of passing. Sort of like when I got my driver's license when I was 16, only it's at the other end of the spectrum.

A friend sent me the following about being on this end of the spectrum. It's called "And Then It's Winter". I think the writer is anonymous. You may have heard it before. But, I feel that it was appropriate tonight. I feel blessed to be able to spend the winter of my life with my best friend and soul mate of 45+ years. The love of my life, Mary Jo.

AND THEN IT'S WINTER

You know. . . time has a way of moving quickly and catching you unaware of the passing years. Yet in a way, it seems like eons ago, and I wonder where all the years went. I know that I lived them all. I have glimpses of how it was back then and of all my hopes and dreams.

But, here it is... the winter of my life and it catches me by surprise...How did I get here so fast? Where did the years go and where did my youth go? I remember well seeing older people through the years and thinking that those older people were years away from me and that winter was so far off that I could not fathom it or imagine fully what it would be like.

But, here it is...my friends are retired and getting grey...they move slower and I see an older person now. Some are in better and some worse shape than me...but, I see the great change...Not like the ones that I remember who were young and vibrant...but, like me, their age is beginning to show and we are now those older folks that we used to see and never thought we'd be.

Each day now, I find that just getting a shower is a real target for the day! And taking a nap is not a treat anymore... it's mandatory! Cause if I don't on my own free will... I just fall asleep where I sit!

And so...now I enter into this new season of my life unprepared for all the aches and pains and the loss of strength and ability to go and do things that I wish I had done but never did!! But, at least I know, that though the winter has come, and I'm not sure how long it will last...this I know, that whenit's over on this earth...it’s over. A new adventure will begin!

Yes, I have regrets. There are things I wish I hadn't done...things I should have done, but indeed, there are many things I'm happy to have done. It's all in a lifetime. So, if you're not in your winter yet...let me remind you, that it will be here faster than you think. So, whatever you would like to accomplish inyour life please do it quickly! Don't put things off too long!! Life goes by quickly.

So, do what you can today, as you can never be sure whether this is your winter or not! You have no promise that you will see all the seasons of your life...so, live for today and say all the things that you want your loved ones to remember...and hope that they appreciate and love you for all the things that you have done for them in all the years past!!

"Life" is a gift to you. The way you live your life is your gift to those who come after. Make it a fantastic one.

LIVE IT WELL!
ENJOY TODAY!
DO SOMETHING FUN!
BE HAPPY!
HAVE A GREAT DAY!

Prayers for the people of Moore, Oklahoma

Like many of you. Mary Jo and I have been watching the horrific pictures coming out of Moore, Oklahoma since this afternoon. Our hearts go out to those who lost loved ones. Life is such a precious gift. A single moment in time can change our lives forever. Give thanks and cherish every moment.

Mary Jo Update #39 - A Pentecost Sunday In Music City

A quiet Pentecost Sunday around here. No visits to the clinic until Tuesday. We are praying that Mary Jo's stem cells are still doing those wonderful things that they have been doing since Mother's Day. 

I walked to Mass this morning at the Cathedral of the Incarnation. The Cathedral is a little less than a mile from our apartment. I took several pictures after Mass.

At our churches back in Kentucky, we celebrate Pentecost, the birthday of the Church, by wearing red to symbolize the love of the Holy Spirit, and the tongues of fire that appeared over the heads of the apostles on Pentecost.

I didn't bring a red shirt to Nashville with me. So, I wore a bright orange one to Church instead. Evidently, the tradition of wearing red on Pentecost hasn't caught on down here. There were only two or three people in the assembly wearing red.

When I shook hands with the priest after Mass, he said aren't you afraid that you're going to get ran over wearing that shirt around here." I explained that it was as close to red as I could get today. I didn't think that the animosity between Vanderbilt and Tennessee fans was like we have between Louisville and Kentucky fans back home. Maybe, I'm wrong. 

It wasn't a quiet day in downtown Nashville, though. Today and tomorrow is the grand opening of the brand new 2.1 million sq.ft. Music City Center. We drove around the outside one day. It is huge. We figured that there would be way to many folks down there for Mary Jo. Here's a video:

 

I hope that everyone had a wonderful weekend. Even though, none of us bought that $600 million winning ticket at the Publix in Zephyrhills, Florida. I think that I did see someone view the blog from Zephyrhills a few days ago, but probably not the person who won.

Thanks again for all of your thoughts and prayers.

Mary Jo Update #38 - Battle of the Goodwill Surplus Store Stars

We had an appointment at the outpatient clinic this morning. The blood labs showed that Mary Jo's blood counts are continuing to improve. Her WBC went from 2.5 on Thursday to 4.4, and her ANC went from 1.37 to 2.15.

Good news on both accounts. Mary Jo got some magnesium because it was low again. The best news from our visit was when Anne, her nurse practitioner, told us that we would not have to go back to the clinic until Tuesday at 9 am.

When you are spending so much time hanging out at the outpatient clinic, the hospital, or the apartment, and since Mary Jo isn't really supposed to go anywhere else anyway, you look for most anything that might be interesting to do to add some excitement to your life.

When we here the last time, a lady named Rosie over at Hope Lodge put us on to a Goodwill Surplus Store that they have here. The lady who told us about it buys articles that are left in abandoned self storage units, and sells the stuff in a consignment store that she owns in Kingsport, TN. She supplements what she buys from the storage units with stuff from the Goodwill Surplus Store.

The surplus store is where they send the overflow donations that they don't have room for in stores. 99.9% needs to be taken to a dumpster somewhere. But, sometimes you can find something that you can use in the other .1%.

I'm not sure how it is over there on weekdays, but it gets pretty wild on Saturdays. Today, a woman who I believe to be Haitian nearly got into a knock down, drag out fight with a couple of other women who she accused of stealing stuff from her basket. A Goodwill referee had to go over and break it up. No doubt, you could do a reality show from there on Saturday mornings

Anyway, the way it works. They roll out these big bins of junk. Everybody gets there position around the bin, but the rooters can't start rooting until the Goodwill referee says they can.

The price of the stuff that you buy is not by the item, but by pound. The more that you buy the cheaper it is. Under 30 pounds you pay $1.99 a pound. 30-50 pounds is $1.39, and over 50 pounds is $.59 a pound. I'm not sure how you can find 50 pounds of anything worth having in there, except maybe women's handbags and accessories that you are going to resell. But, If you can find over 50 pounds, you can get a good deal.

They will roll out a bin with probably 200-300 women's handbags in it. When the referee says go, the rooting commences. Some people are rooting through the handbags for money are jewelry that was left by the owner.

Others are like Rosie looking for purses that are name brands that they can sell in a mall peddler's or consignement. Every now and then, there's a Dooney and Bourke, or some other brand that women pay alot of money for.

I wasn't in the handbag scrum. I was just looking for a nice, like new leather computer bag. I found one. Paid $3.27 for it. Anything, to help the Nashville economy out. When I got it back to the apartment, there were four Italian coins, five Belgian ones, and six German ones.

Since all of these countries use Euros now. I don't they are worth anything, right now. However, the internet said that they may have value to coin collectors in about 100 years. Now, all I have to do is figure out how to live to be 165.

Oh well, they will always be that treasure that I found in my Goodwill computer bag. I will always wonder who owned that computer bag, and what happened to them, what kind of business they were in, and why they carried those European coins in their bag. BTW, Mary Jo didn't go in.

Cancer Drugs Cost By State?

Another post from Dr. Sharman's blog on the cost of drugs

I already put up a post explaining why drugs cost so much.  Essentially it has to do with an enormously expensive process of drug development, the high rate of drug failure, the frequency of the diagnosis, and good old fashion profit.

One out of four patients walks away from the pharmacy counter without their medications when they are told the co-payment is $500 or more.  For new CLL/NHL drugs (lenalidamide, ibrutinib, idelalisib, etc.) lots of people will be encountering that sort of bill.

Under new health-care regulations the price you pay may vary considerably based upon the state you live in and the rules imposed upon insurers on account of their individual exchange policies.

Look for patients in California to find another reason to leave the state (like I did).  New York on the other hand looks pretty good.  Can't wait to see what states like Texas and Oregon do (on either end of the political spectrum).

Once again, the law of unintended consequences makes things harder on quite a few people. 

Mary Jo Update #37 - Yikes! The Terror Of Grocery Shopping

Today was the first day since we came back to Nashville on April 29th that we didn't have to go to the stem cell outpatient clinic, or the hospital. So, how did we spend a rainy day in Music City? A lot of it at Walmart. Since Mary Jo is not supposed to go into stores, I had to do the shopping which always causes anxiety.

One of the aspects of my particular brand of anxiety is the conviction that I don't know how to do certain things unless given explicit instructions. One of the Great Mystery Skills I'm positive I don't have is cooking. And mixed up with this lack of cooking confidence is the terror of grocery shopping.

Not that I break into a cold sweat whenever I walk into a grocery... what happens instead is a sort of mental block as I wander through the aisles. I stare at all the food, all the varieties and brands and options, and I have absolutely no idea what to buy, even if I have a list, unless it is very specific and in great detail.

The first couple of days that we here we ate out. Then, on the days that Mary Jo was taking chemo, she didn't have much of an appetite. When she was in the hospital we were both eating there. So we had not made a comprehensive trip to the grocery since we came back.

With Mary Jo being on the neutrpenic diet, she cannot eat any fresh fresh vegatables, and only thick skinned fruits. She can eat oranges and bananas, but no apples, pears, or peaches, etc. She can eat canned fruits and vegetables. No aged cheeses. Basically, anything that could possibly carry a bacteria is off limits.

If she eats food from a restaurant, it has to be something that was prepared while you wait. Nothing that has been cooked, and placed under a heat lamp. No salad bars or buffets. The folks at the clinic said that the easiest thing to do to be safe is to eat frozen dinners in the apartment until her immune system totally recovers which could be several days.

Mary Jo was told to wear a mask anytime the she is not either in the apartment, or in the stem cell center, and to avoid anyplace there are a lot of people, such as grocery stores, malls, restaurants,etc. So, eating out isn't an option, anyway.

As said, I did the shopping today while Mary Jo waited in the car. Mary Jo has always done the grocery shopping. I'm sure that I looked like a deer in headlights to those experienced shoppers as I wandered the aisles. Mary Jo actually gave me a list. I'm sure that she thought the items on the list were identified clearly, but I had to call her about five times for clarification.

If you google neutropenic diet on the internet, you will find lots of articles that question the benefit to the neutropenic patient following a strict neutropenic diet, and wearing a mask around all of the time.

But, when the health professionals who are managing your transplant tell you these things. I wouldn't want to be the patient or caregiver of a patient who has contracted some kind of bacterial infection. The doctor asks where you've eaten, and you have to tell them a salad bar after they have warned you not to. This actually happened to a friend of ours named John who was in Chicago for a stem cell transplant and ate a salad bar.

Mary Jo had a little rash develop today which caused her a little discomfort. It was probably caused by the platelet transfusion yesterday. Luclily, the nurse practitioner yesterday had ordered a larger quantity of Triamcinolone Cream that she was using in the hospital.

It wasn't a good day for walking today. But, we had about a half an hour walk around Magnolia Circle on Vanderbilt's beautiful campus last night. Here's a video made around Magnolia Circle showing the beutifully columned buildings surrounding it. Our apartment is just behind the second building shown.



It seemed a little strange not seeing the doctors and nurses across the street today. Back to the clinic at 9:30 tomorrow. It will be interesting to see how her blood levels do without a Neupogen shot today.

Remember I'm a person too, not just a patient

A great article about being an oncology patient from Karin Diamond over at the eyes peeled, always blog

I don't have a degree in medicine. I have not taken the rigorous classes you have taken. I cannot start an IV, take a pulse, identify a rash, or properly dress a wound. I have my degree in English. That means I can point out grammatical errors on restaurant menus, but measuring medicine into a vial hurts my brain.

I'm not trying to offer medical how-tos. Instead, I'm offering one patient's perspective from the other side of the thermometer, the stethoscope, the hospital gown. So that you understand I have some legitimate experience to back up the advice I'm offering, here's a glimpse at my treatment resume:

I was diagnosed with Stage 4B Hodgkin Lymphoma in 2009 at age 26. Four years later, we now know I have a rare, refractory strain of the disease. I've had more than 30 chemotherapy agents -- several regimens requiring inpatient stays. I've had nurses come to my home to administer chemo. I've participated in several early phase clinical trials that required constant nurse-to-patient correspondence. I've had four surgical biopsies performed and underwent two failed autologous (my own cells) and an allogeneic (from a donor) stem cell transplant that required 25 consecutive days of inpatient isolation and much intimacy with nurses.

Medical teams at Hartford Hospital and Yale New Haven Hospital in Connecticut, MD Anderson Cancer Center in Texas and Memorial Sloan-Kettering and Columbia/New York Presbyterian in New York City have treated me.

Through all this, I've had so many incredible, moving experiences with nurses. I am forever grateful to those medical team members and the selfless and steadfast care they gave that carried me through the ups and downs. I've had few bad encounters, but unfortunately, it's those unpleasant ones that stand out and make you realize your vulnerability as a patient and how much you rely on the intelligence and thoroughness of your nurses.

There were times when I was severely neutropenic (dangerously low immunity) with incessant fevers and teeth-chattering chills. No one would answer the call bell, nor my husband's direct requests in the hallway for Tylenol because it was "shift change" and I wasn't someone's "problem" at the time. This is not okay.

On the other end of the spectrum, I celebrated my 29th birthday in the hospital and my closest nurse came in on her day off to bring me a balloon bouquet. Then, the whole evening shift of nurses brought me a cake, more balloons, and sang to me. The difference in health care is embodied in that personal connection. Rub a patient the wrong way and his or her experience is going to be difficult. Rub them the right way and you can instill so much hope and comfort.

It's the nurses with the thickest of skins that seem to do the best, those that are able to let the tough stuff roll off their backs and after a slaughtering in one patient room, walk into the room of the next patient with a smile and a fresh perspective. I've seen nurses be berated. Nurses have told me horror stories of what they endure on any given shift. There needs to be a mutual person-to-person understanding. For this part of your job especially, I have the greatest respect. No doubt you grow close with patients but also have to remain separate from the joy that they will bring you and the pains that they will cause you in order to protect yourself.

You've chosen a profession where you're helping human beings in their most vulnerable moments. Your hearts are obviously tender and open or you wouldn't be in this field. With that choice comes great responsibility. If you are a printer repair person and you incorrectly install a part, no one can make hard copies for a day. If you double dose a patient's meds or aggravate an infection by not properly sanitizing an instrument, a person is dead. What a humbling and respect-deserving occupation. And what do you get in return? Sometimes only some vomit to clean, a bloody mess to soak up or a cranky, angry berating. What I hope you also get are the compliments you deserve for saving and improving lives every day.

I believe that a lot of the responsibility for good care is on the patient as well. Patients need to be their own advocates and need to pay attention to the care and treatment they are receiving. There is too much room for dangerous error in settings where nurses are taxed for time and endurance.

Keep in mind that the patients know their bodies and case best. Encourage them to talk with you about their symptoms and listen to them. We need to tell you when we're in pain, if we don't understand a procedure, or if we need a blanket, a ginger ale, a fresh pair of those fashionable no-slip hospital socks. Maybe we can't all explain it in the most refined medical terms, but only a patient can know when something doesn't feel right. That natural intuition is a valuable diagnostic tool. I've been fortunate to have doctors and nurses that respect me and allow me to be very involved -- at the helm of my medical care as CEO of Keep Karin Alive, Inc.

When I alert nurses to symptoms, they will take me seriously. Sometimes it takes a little nudging to be heard, but it's up to the patient to keep pushing, and for the nurses to keep listening and following their valuable intuition as well. It may be the doctors calling the shots from afar, but it's the nurses caring for us most intimately. You know us best.

I can't claim to speak for every patient as we all are very individual in our needs and desires for care approaches. Maybe that's the top takeaway: gauge your patients. Do they want to be informed about every detail or would they rather be on a need-to-know basis? Do they like their shots given quickly or pushed slowly? Do they want privacy or companionship? Find that balance and tailor each patient's experience. Proper health care is not one-size-fits all. I'd venture to guess that even if the 80-year-old Spanish-speaking man in the chemo recliner beside me has my same disease, his needs are different. Keep that individualization in care and kindness at the head of everything, and the rest will fall into place.

About a week into my donor transplant hospital isolation stay, my day nurse was in the room when nausea hit real hard and I couldn't hold back a vomit session into the yellow bucket. I looked up at her with exhausted puppy eyes and said: "I really hate puking."

Without skipping a beat, she deadpanned back: "Well IIIII LOOOOVE IT!" as she handed me a warm wet towel to clean up with. I was so shocked by her candid sarcasm that I got over my self-pity pretty quickly and my husband and I laughed with her. She knew just what I needed in that moment. I didn't want to be pitied and coddled and she got that. I wanted her to relate to me. That is what skilled nursing means. Maybe you can hang a perfectly timed bag of red blood cells, but if you can't look me in the eye or ask me about my husband or my dog or my hobbies while you're doing it, then you leave me isolated and scared.

Resistance To Ibrutinib

Some more news about the new drug used for Chronic Lymphocytic Leukemia and the Mantle Cell Lymphoma that Mary has from over at Dr. Sharman's CLL and Lymphoma Blog

ASCO abstracts are out. It feels like Christmas Morning and I am 5 years old (that is probably a very sad commentary about myself).

I'm part way through the CLL stack and Abstract 7041 jumps out at me as a MAJOR discovery:

They took CLL cases treated with ibrutinib and sequenced the entire exome in patients who became resistant (an exome sequence is not as comprehensive as a genome but it is still pretty dang impressive).

In resistant cases, they found that the binding site for ibrutinib on BTK had been mutated in two cases and in a third case, an enzyme downstream of BTK acquired a mutation that turned the protein on.

This is big because it can tell us why patients become resistant to the drug. It is always a good sign that you have hit a very important target when the mechanisms of resistance show how important the pathway actually is. In other words, you know the BCR is important because the CLL cells that become resistant have discovered a way to reactivate the BCR. The next step is figuring out how to get those patients to be sensitive again (perhaps using idelalisib?)

The other significant finding of the paper is that ibrutinib does not result in a bunch of new genetic changes in the same way FCR might.

Can't wait to review other abstracts but this one is VERY important!

Mary Jo Update #36 - Back In The Clinic...It's A Beautiful Thing

Mary Jo and I went back to the outpatient clinic today after she was discharged from the hospital yesterday. Going to the clinic is a relief after her 11 days in the hospital. Mary Jo's WBC and Neutrophil readings continued their upward movement towards the normal ranges (in parentheses). Her WBC reading was 2.5 (3.9-10.7), up from yesterday's .6 reading; and the Neutrophil reading was 1.37 (1.60-8.10), up from yesterday's .16 reading.

Mary Jo's nurse practitioner said that the level of these readings are great for Day +10 indicating that Mary Jo's stem cells have grafted. Since that has happened, her body should start producing stem cells on it's own. So, the Neupogen shot that she received today will be her last one on a routine basis. All of this was very good news, but that was not all. Since she is doing so well, we won't have to come to the clinic every day. A small first step to getting our lives back to normal.

Mary Jo is taking a Cardizem tablet every day for her heart. The nurse practitioner said that they want her to continue taking it, even after her recovery period is over. They will re-evaluate the need for her heart medication in about a year.

They are giving Mary Jo potassium, magnesium, antibiotics, platelets and some other stuff today. So, we will have a pretty full day at the clinic. The nurse practitioner said that they are trying to keep Mary Jo's potassium and magnesium levels high because of the A fib condition that she experienced with the BCNU on the 5th day of chemo conditioning.

They actually gave Mary Jo potassium in two forms today, one a tablet and the other a potassium elixir. The elixir evidently has a terrible taste. So, the nurse asked her what she wanted to mix with the elixir. Mary Jo asked me for suggestions. I suggested, "Makers Mark or Woodford Reserve". But they weren't on the list. So, she chose orange juice. It must really have been bad. She also sucked on a mints, and ate crackers after drinking it.

Dr. Chin, the transplant doctor replacing Dr. Engelhardt this week, came into visit with us a little while ago. Chin is actually short for Chinratanalab, He is from Thailand. Dr. Chin was very upbeat about how Mary Jo was doing. He said that they would remove the trifusion catheter when she no longer needed platelets and the other infusions. Mary Jo will have to go back to the operating room in the hospital to have it removed.

Mary Jo's progress since Mother's Day has been a beautiful thing.



But, the nurse practitioner and Dr. Chin said that the patient's blood levels usually fall back a little after the routine Neupogen shots are stopped. They said, not to worry, they would give her more of the shots, if her stem cells needed more encouragement. They will also continue the potassium and magnesium supplements, and platelets, as needed.

Mary Jo received the card below from our pastor, Father Dale, Laura, Diane, Carl, Nancy, Lisa, Helen, Darlene, Monique, and Jerry from the staffs of our Churches' back in Taylorsville and Mount Washington, Kentucky. Mary Jo and I thank God and all of you prayer warriors for rushing into the battle to fight and pray for us.



Gotta go. The folks from Duck Dynasty and Swamp People on Katie today.

Mary Jo Update #35 -In Thanksgiving, Ave Maria

05/15/13 00:10CBCWBC: 0.6* thou/uL (3.9-10.7)    Hemoglobin Blood: 10.2* g/dL (11.8-16.0)    PCV BLOOD: 29* % (36-43)    MEAN PLATELET VOLUME: 10.8 fL (9.3-12.8)   PLATELET COUNT: 12* thou/uL (135-371)    Red Blood Cells: 3.23* mil/uL (4.00-5.50)    MCV: 90 fL (81-98)    MCH: 31.6 pg (27.0-32.0)    Mean Corpuscle Hemoglobin Concentration: 35.1* g/dL (31.0-35.0)    Red Blood Cells Width Distribution: 13.0 % (11.1-14.3)   

05/15/13 00:10DifferentlNEUTROPHIL %: 29.0* % (35.0-75.0)    LYMPS %: 58.1* % (15.0-49.0)   MONOCYTES %: 11.3 % (3.5-12.0)    BASOPHILS %: 0.0* % (0.1-1.5)    NEUT (ABS): 0.16* thou/uL (1.60-8.10)    LYMPHS (ABS): 0.33* thou/uL (1.10-3.50)   MONO (ABS): 0.06* thou/uL (0.30-1.10)    BASO (ABS): 0.00* thou/uL (0.01-0.08)   ATYP LYMPHS (ABS): 0.01 thou/uL    NUCLEATED RBC: 0 /100_WBC   NUCLEATED RBC#: 0.00 thou/mL    WBC COMMENTS: WBC comment    # WBC'S COUNTED: 62 

The good numbers keep getting better!  The progress with Mary Jo's WBC continued this morning. Her WBC number actually doubled from yesterday's resding of .3 to .6. Dr. Engelhardt said this was outstanding for Day +9.

There are actually two numbers on Mary Jo's blood labs that the doctors are looking at that indicate that the engraftment process is underway. The WBC and the NEUT (ABS) numbers are in red above.. The NEUT (ABS) is the Absolute Neutrophil Count  (ANC).  Mary Jo's ANC is at 160 today. When the count is 500, or higher, for three straight days, it indicates that the her stem cells that were infused have grafted to her body.

At this morning's meeting with Dr. Engelhardt and the transplant team, he confirmed that Mary Jo would be discharged today. When a patient's platelet count drops below 20, they infuse platelets. Since Mary Jo's are at 12 this morning, she will need platelets before she's released. We could be here for little while. Dr. Engehardt said that they had to special order the platelets because Mary Jo can only use 2 of the platelet types. I always knew Mary Jo was special.

We will be making our daily visits to the outpatient stem cell clinic starting again tomorrow. The caregiver's duties will ramp up a little bit, since we won't have a cadre of nurses and doctors around. We will have to check Mary Jo's temperature four times a day. We also brought her blood pressure cuff with us. Jayme is back as Mary Jo's nurse today. Jayme was there when Mary Jo's stem cells were infused last week. She is a wonderful nurse. We like her a lot.

Mary Jo's progress since Mother's Day has been remarkable. After the problems Mary Jo had last Friday, Peggy, a friend in North Carolina wrote in an email that she would be praying specifically on Mother's Day for Jesus' mother, Mary, to intercede with her Son on Mary Jo's behalf. I know there are others out there praying to the Blessed Mother, too. As a believer in the power of prayer, and that Jesus truly listens to His mother, I give thanks to Jesus, His Blessed Mother, Peggy, and all of you for all of your prayers.

Thanks to our friend, Cathy in Louisville. Here's a tribute to Jesus' mother sung  by Karol Wojtyla, Blessed Pope John Paul II singing Ave Maria in 1976:



P.S.Please keep our friends, Peggy and her husband, Steve, in your prayers. Steve is battling Mantle Cell Lymphoma, too. He has had several chemo treatments at the Cancer Center of Duke University.

Mary Jo Update #34 - YAY! The Stem Cells Are Moving!

Some great news when I arrived at the hospital today. It's Day +8, and the stem cells are moving. The overnight vitals indicated that Mary Jo's WBC went from .1 to .3. As I said yesterday, we are encouraged, even by the smallest signs of progress giving us rays of hope.

A .2 change is very small. But, the significance is huge. It is a sign that the stem cells are moving. Natalie, Mary Jo's nurse, said that many times the WBC may actually fall back some after upward movement starts. But, the important thing is that they are moving.

Normally, the stem cell movement doesn't happen until Day +10 to Day+14. I think this may be an indication that the daily Neupogen shots that Mary Jo has been receiving since the transplant are doing their job.

At this morning's meeting with Dr. Engelhardt and the transplant team, he told us that, barring unforeseen circumstance, Mary Jo should be discharged from the hospital tomorrow afternoon.

Mary Jo said that she got a good night's sleep for a change last night. She must have had a stealth nurse. Mary Jo said that the nurse didn't wake her after her vitals were taken at midnight. Natalie said that she didn't want to wake her up just to give her the good news.

Even the mouth sores seem to be improving. After her severe stomach cramps had stopped, they left the morphine pump attached to her IV stand to use if the pain from swallowing became too bad. Mary Jo had used the pump very little, and not all yesterday. So, they have removed the pump. That will make pushing the IV stand around easier when we take our laps around the stem cell center.

They are also giving her hydration from only one line now, instead of two. So with that and the morphine pump being removed, she only has to deal with one line connected from the IV stand to her catheter. It sounds like a little thing, but it has helped her mobility quite a bit.

This will be Mary Jo's 11th night in the hospital. It will be good to have her back at the apartment again. As I have said before, I think that it was a good thing that Mary Jo has been in the hospital. Especially, while she was experiencing all of those harsh side effects from the chemo. At least, she was here where they could respond quickly to whatever change had happened.

When Mary Jo is discharged, we will go back to making daily visits to the outpatient stem cell clinic for blood labs and blood product infusions, if they are needed.




When I got in my car last night in the hospital's Central Parking Garage these items were on my windshield. You know that you are spending too much time at the hospital when the Vanderbilt police officers patrolling the parking garage see your car there so much, and for such long periods of time that they figure you must be a faculty member, staff, student, vendor, or a construction worker parking in an area where you're not supposed to.

I called the parking office this morning about my warning citation. They put my license number in their database. So, I shouldn't get any more presents on my windshield. It would seem like to me that it would be a good idea if they gave long term patients, like us, some kind of sticker, or something that would identify the
car, as such.

Rita, Mary Jo's, nurse for today, said that the stem cell center used to have patients call the parking office to have their license numbers entered into the database to prevent this from happening. But, the parking office told them that this was no longer necessary. Go figure!

Once again, thanks for all of your thoughts and prayers. They seem to be working.

I have had a few requests for our mailing address here in Nashville. So, here it is:

105 Village at Vanderbilt
Nashville, TN 37212

We still anticipate being here until early June.