This Ordinary Stardust - Book Review

Title: This Ordinary Stardust; A Scientist's Path from Grief to Wonder

Author: Alan Townsend PhD

Publisher: Grand Central Publishing

Publication Date: June 4, 2024

Length: 272 Pages

About the Author
Dr. Alan R. Townsend is a scientist, author, speaker, and Dean of the University of Montana’s W.A. Franke College of Forestry and Conservation.

A Journey of Science, Love, and Grief
Dr. Alan Townsend and his wife Diana worked as environmental scientists. The author's life is turned upside down when both his wife and his four-year-old daughter are diagnosed with unrelated, life-threatening forms of brain cancer.

My Thoughts
Dr. Townsend writes poetic descriptions of the work that he and his wife did as environmental scientists. I especially enjoyed the trip they made to the author's home state of Hawaii. 

When Dr. Townsend's four-year-old Neva was diagnosed with brain cancer, the family was determined to get her the best medical care possible. She received brain surgery that slowed down the growth of the cancer. Later, she had another surgery that completely removed the cancerous tumor.

When Diana was diagnosed with an unrelated form of brain cancer, the family was again focused on finding the best doctors and treatments available. Unfortunately, Diana did not survive her illness. 

This book describes how science and spirituality combine to deal with grief and to celebrate a life well lived. The author has written a beautiful love story that describes the happy years he spent with his wife, the struggle to find cancer treatment for both his daughter and wife and his wife's eventual death. This is an amazing story of hope and resilience. 

Highly recommended!

MY RATING: 5 Stars Out Of 5

Thank you to NetGalley for an excellent reading opportunity.

Nurse Papa Teaches Lessons on Life and Death

 Title: Nurse Papa; 16 Meditations on Parenthood From a Pediatric Oncology Nurse

Author: David Metzger

Publisher: Genz Publishing

Publication Date: August 17, 2021

Length: 175 Pages

About the Author
David Metzger has worked as a pediatric oncology nurse at UCSF Children’s Hospital for twelve years. He is the father of a young son and daughter. The bravery, laughter, perseverance, and the many smiles of the children and their parents who he has worked with have inspired this project.
You can visit the Nurse Papa blog and the Nurse Papa podcast at www.nursepapathebook.com

Life as a Nurse and Papa
David Metzger writes about the lessons that he learned about life and death as a pediatric oncology nurse. He uses his experiences at work to gain insight and understanding of his role as a father to two young children. His life at work and at home intertwine to form a wonderful collection of the author's most cherished memories.

My Thoughts

It is not natural to talk about children and cancer in the same sentence, but Mr. Metzger has dedicated his life to caring for children with cancer. He writes about some of his most memorable patients and the valuable lessons he learned from them. 

I could tell that the author was growing as a person and becoming more compassionate and empathetic as the book progressed. He gives credit to his patients for teaching him to live and die with dignity and grace. He credits his children for teaching him to live in the moment and appreciate all that life has to offer.

There are some very emotional stories in this book because many children with cancer do not survive the disease. The author focuses on the celebration of life instead of the sadness of death. 

This book was well-written and I am glad I read it. I now have a new respect for all the superheroes who wear a nurse's uniform.

MY RATING: 5 STARS OUT OF 5

FYI - I received a free digital copy of this book from NetGalley in exchange for a fair review.

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The Gratitude Prescription by Will Pye

The Gratitude Prescription: Harnessing the Power of Thankfulness for Healing and Happiness

Author: Will Pye

Publisher: Reveal Press

Publication Date: May 1, 2019

Length: 232 Pages








About the Author
Will Pye is an entrepreneur, transformational coach, speaker, and spiritual teacher. In his early twenties, Will embarked on an intense quest exploring human potential and the nature of reality in order to overcome his own suicidal depression. He enjoyed business success while raising millions of dollars for leading charities. A series of awakenings, and then a brain tumor diagnosis in 2011, inspired a new direction. Since then, Will has given talks, meetings, workshops, and retreats—globally sharing the power of presence and gratitude for well-being and awakening.

The Healing Power of Gratitude
What do a bitter and traumatic family breakup, addiction, bouts of suicidal depression, an ever-breaking heart at a world gone mad, grand mal seizures, financial loss, and brain cancer have in common?

The author shares his story and describes how he was able to overcome his problems and challenges through the power of gratitude. This book is about thriving and resilience, not in spite of life's difficulties but because of them.

My Thoughts

Gratitude is defined as "the quality or feeling of being grateful or thankful". (Dictionary.com)

Mr. Pye has done a great deal of research on the mind/body connection. He shares many of his findings in this book. He believes that thoughts of gratitude and positivity can bring about healing and well-being to the mind, body, and soul. 

The author shares his story about how he used journaling, affirmations, and meditation after he was diagnosed with a brain tumor. He focused on self-reflection and gratitude during the most difficult days of his treatment.

This book describes specific affirmations and provides meditation prompts that readers can use to improve their own mindsets. The author asks readers to "reflect on how your experience of changing the way you looked at an issue changed how you experienced it."

I found this book inspiring and uplifting. This is the kind of book you will go back and refer to often. The author ended each chapter with a simple "thank you" to express gratitude and appreciation to his readers.

I want to express my appreciation to all who read this review.

Thank you.

MY RATING: 5 STARS OUT OF 5

FYI ~ I received a free digital copy of this book in exchange for a fair review from NetGalley.

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Cancer Patient Dies With Dignity

Dying Well: Our Journey of Love and Loss

Author: Susan Ducharme Hoben

Publisher: Canton Press

Publication Date: March 18, 2018

Length: 290 Pages




About the Author
Susan Ducharme Hoben feels passionately that we Americans do not die well, taking a terrible toll on us, emotionally and financially. She hopes that her experience with an uplifting end-of-life journey can contribute a valuable perspective to the growing interest in exploring how we die. 

An Uplifting End-Of-Life Journey
Susan Hoben was a breast cancer survivor. 

In 2008. Bruce Hoben was diagnosed with a tumor where the esophagus joins the stomach. Bruce was 67-years-old and appeared to be in excellent physical condition.

Bruce was diagnosed with a neuroendocrine tumor. There was also significant disease in the lymph nodes and four nodules on the liver. Bruce had stage 4 cancer and the prognosis was not good.

Bruce received chemotherapy treatments and experienced a brief remission. When the cancer came back, the Hobens decided to refuse any further treatments and let the disease run it's course. This is their story.

My Thoughts
This book was written in the form of a personal diary or journal.

Mrs. Hoben wrote about her husband's final months with love, compassion and empathy. This book is truly a celebration of life.

Bruce Hoben spent his final weeks saying goodbye to former coworkers, neighbors, friends and family members. The family events and interactions were especially heart-warming and poignant.

Mr. Hoben did not spend his final days in a hospital undergoing extreme measures that would put his quality of life in jeopardy. He was under the care of his physician and a hospice service, but he stayed at home with his loved ones.

Bruce Hoben passed away peacefully and surrounded by family on June 15, 2009. 

This book is an excellent resource for families who are facing end-of-life decisions. We will all have to face our own deaths and the deaths of loved ones. This book provides many important subjects to think about.  Highly recommended!

MY RATING: 5 STARS OUT OF 5


FYI ~ I received a free digital copy of this book from NetGalley in exchange for a fair review.

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A Transplant for the Cure - Day Zero

Nurse Carol was preparing the apheresis machine for the
stem cell harvest.L

Day zero began early on Tuesday, November 17. I woke up in the wee hours of the morning and my ear was hurting. I ate a few crackers and took an Extra Strength Tylenol before going back to bed.

My appointment at the apheresis department in the University of Kansas Medical Center was at 7:00am. It was a cool, rainy morning and the traffic was heavy on our way to the hospital. Lois dropped me off at the front entrance, and then took Karen over to the BMT Clinic for her appointment. I walked in the door of the apheresis department at exactly 7:00am.

A nurse named Carol greeted me led me to the room where the stem cell harvest would take place. I sat down in a dentist-style chair, and Nurse Carol immediately started checking the veins in my arms. If the veins were not sufficient, I would be required to have a line surgically placed in my neck. I was very relieved to learn that the stem cells would be taken from the veins in my arms.

The apheresis machine that filtered the stem cell from my blood.

I was anxious about this entire process. Lois came back to the hospital after she left Karen at the Bone Marrow Transplant Clinic. Nurse Carol was a real pro and made me feel completely relaxed. She placed IV needles in both my arms very quickly and with very little pain. My blood would be drawn out of the needle in my left arm, the machine would filter out the stem cells, and then the blood would be returned to me through the needle in my right arm. I had to keep my left arm completely still, but I was allowed to move my right arm a small amount. The collection began at 8:30am.

Bag of stem cells harvested from
my blood.

I learned that the apheresis harvest procedure usually takes about 4 hours. However, Karen's doctor wanted some extra stem cells to freeze for later use. I was not asked if I was willing to stay on the machine an additional hour, the doctor made that decision for me.

The collection process went smoothly. There were several times when my face and hands started tingling. Nurse Carol added more calcium to my IV when I told her about the tingling. The last hour was the most uncomfortable. I had to have Lois take my shoes off because my feet were swelling.

The apheresis machine was shut down a few minutes past 1:30pm. I was running a low grade fever and was still taking the antibiotics for my earache and sinus infection. I was told that my illness did not have an adverse effect on the stem cell collection.

The procedure was over and much easier than I imagined it would be. Nurse Carol did an outstanding job and I am so glad that Lois was with me during the entire process.

Karen received her stem cell transplant between 9:30 and 11:30pm. A message written on the white board in the room said, "Day 0 - Happy Cell Day, Karen!" The entire process was done outpatient and we all got back to Lois' house at midnight.

The transplant was complete.

A Transplant for the Cure - Tomorrow

Sign pointing to the Bone Marrow Transplant area
at the University of Kansas Medical Center

Tomorrow is Day Zero for our long-awaited stem cell transplant. The past two days have been filled with clinic visits and a little sight-seeing on the side.

I have been plagued with sinus problems since I arrived in Kansas City. A bit of stuffiness in my head turned into a painful earache, pressure in my neck, and jaw pain. At times it felt like my teeth would fall out. I have been taking two Neupogen shots a day for the past four days, and I think this has aggravated my head problems.

The nurse at the clinic told me that I could only take Extra-Strength Tylenol for the pain. After much discussion, a doctor prescribed a 14 day supply Amoxicillin. I don't know if I really have an infection, or if my ear/head ailments are side effects of the Neupogen shots. It appears they are going to take my stem cells and then send me home sick.

Tomorrow, I report to the BMT Apheresis room at the University of Kansas Medical Center. Lois will drive me to the hospital for my 7:00am appointment. The nurses will check my veins and determine if they can take the stem cells from my arms. I am hoping and praying they will be able to do this. I will then sit in a dentist-style chair for four to five hours while they take blood out of one arm and put the unused blood back in my other arm. The apheresis machine will filter out the needed stem cells.

If they can't use the veins in my arms, I will have to have a line surgically inserted into my chest. The blood will then be take from the line, filtered through the apheresis machine, and then back to me through the line in my chest. A nurse called today and said that if I have to have the line in my chest, they will keep me in the hospital for one night. They will then harvest more stem cells the next day. 

The long hallway to the Apheresis area of the hospital.

Karen's schedule tomorrow includes a visit to the BMT clinic in the morning, radiation treatment at the KU Medical Center Hospital in the afternoon and the stem cell transplant at the hospital in the evening. She will then be sent home for the night and report back to the BMT clinic on Wednesday morning. That is the plan, if all goes well.

I will be very glad when this is over and Karen has a brand new immune system to fight any remaining cancer cells in her body. Many patients consider a stem cell transplant as a type of "birthday", a fresh start.

I know that many, many of our family and friends have been praying for us and the success of the stem cell transplant. I want to thank each one of you and tell you that we know you are with us in your thoughts and prayers. The next few weeks will be critical in Karen's recovery, so please continue to keep us in your prayer.

I want to especially thank my Uplifters Life Group from First Baptist Church, Conroe, Texas. They have been supporting me in prayer every step of the way.

 Surely goodness and mercy shall follow me all the days of my life: and I will dwell in the house of the Lord for ever.
Psalms 23; 6. 

A Transplant for the Cure - Transplant Countdown

Karen is keeping detailed medical records for the transplant.

We are only three days away from transplant. The time is going very fast. We had a good day today. I had my third and fourth Neupogen shots this morning. They were injected into my stomach but did not sting and burn as much as yesterday. I think I had the first day jitters yesterday, but today was much better. The only side-effects that I am feeling from the Neupogen are a series of headaches. My head is also congested and I have a cough, but this could be from a change in climate and environment. I have been taking Extra-Strength Tylenol for the headaches and it helps a great deal.

Karen received a breathing treatment and her second pre-transplant chemotherapy treatment this morning. She is feeling amazingly well during these treatments. The transplant is entirely outpatient so Karen will not spend any time in the hospital.

This is how Karen recently described her transplant in a Facebook post;
The stem cell process is a relatively simple one. Janette will get some shots of Neupogen to cause her morrow to release more stem cells into her blood. Then they will hook her up to an apheresis machine that will filter out her stem cells and give her back the rest of her blood. Then they will give me the stem cells though an iv and they will graft into my morrow and start killing the cancer cells. They have found it is no longer necessary to completely destroy my immune system before giving the new cells, just suppress it. Since our HLA codes and blood types are identical, I am believing and expecting this new immune system to develop successfully with no infections or rejection issues. Bless the Lord who heals all my diseases and redeems my life from destruction. Goodness and mercy will follow me through this valley right to the next mountain top. I will start 3 days of chemo today, one day off then a full body radiation followed by the infusion of the new cells. Believe with me for supernatural protection from the side effects of the chemo and radiation.

Lois Crane is standing outside the KU Cancer Clinic

Lois (our younger sister) and I had to leave the treatment room this morning while Karen received her breathing treatment. We used this time to explore the KU Cancer Clinic building. We went outside the front door and took a picture of Lois standing by the name of the clinic. We then sat down on a bench, and decided to take a selfie of the two of us with our shades on. A nice man walked by and asked us if we would like for him to take our picture. What fun!

When we returned home from the clinic, Karen wanted to take a nap. Lois and I went to an Italian restaurant and had a big pasta meal. I was feeling very energetic UNTIL I got back to the house. A full belly and an inviting bed was all I needed to take a little power nap. I dozed-off for about two hours, and felt refreshed and restored when I got up.

Sisters - Janette and Lois.

Tomorrow is Sunday. We have an appointment at the Cancer Clinic at 10:00am for Karen to get her final pre-transplant chemotherapy treatment. I will get my third set of Neupogen shots.

Before I close, I want to mention an outstanding book I read on my Kindle. The title of the book is, "My Cancer, My Faith; One Man's Battle With Cancer, and His Reliance on Faith During His Journey" by Jim Davis. I would like to end with a quote from this book;

"If you are ever feeling down, or feeling that life has taken a recent turn for the worse, just take a couple of hours sitting in the waiting area outside a chemotherapy treatment center. It won't take long for you to see that things could be a lot worse, a whole lot worse." 

A Transplant for the Cure - Moving Forward

Karen Luehrman is preparing to receive her first pre-transplant
chemotherapy treatment at the University of Kansas Cancer Center.

Last week I received an email from Nurse Ellen Maxwell with the heading, "Moving Forward". It said that Karen's stem cell transplant is scheduled for November 17th. This is the third transplant date that has been set since the end of May.
 The first transplant date was postponed because Karen's CLL  changed into prolymphocytic leukemia and she had to take a three-month course of Campath. The second proposed transplant date was postponed because of a systemic fungal infection.

It looks like the transplant is going to happen this time. I flew from Houston to Kansas City yesterday. Karen and I reported to the University of Kansas Cancer Clinic at 8:00am today. Karen already has a tri-line in her chest, so the nurse started an IV with fluids as soon as we entered the office. She then started the first pre-transplant chemotherapy treatment. The treatment took about 30 minutes. I didn't even know she was getting the chemotherapy until it was all over. A pharmacist came in and talked to Karen about the medications she would be taking over the next week. Karen left the building with two large bags full of prescription medicines.



I was getting my first two Neupogen shots.

As the stem cell donor, I am required to take two shots of Neupogen for four days in a row. My first shots were today. I did not know the shots would be given in my stomach. This was an unpleasant surprise. The nurse said she had to give me two separate shots because the dose was too large to be absorbed in one place. The nurse grabbed my stomach fat, and stabbed me with a large needle. The first shot seemed like it would last forever, and I felt a burning sensation as the substance entered my body. The second shot did not last as long and the burning was not as severe. I felt a little dizzy after the shots, but that might have just been anxiety from seeing those long needles.

The pharmacist was talking to Karen about her medications. 

 Neupogen (Filgrastim) is used to increase the number of stem cells in the blood before collection for use in stem cell transplantation. I was only given a limited amount of information about the possible side effects of this drug. I was told I might suffer from some bone and joint pain or possible headaches. I was NOT told that the use of Neupogen could result in serious allergic reactions (including a rash over the whole body, shortness of breath, wheezing, dizziness, swelling around the mouth or eyes, fast pulse, and sweating), ruptured spleen (sometimes resulting in death) and an assortment of other ailments. The long-term effects are not known. (Source: Wikipedia)

I agreed to be a stem cell donor because my sister has a terminal disease and a transplant is the only hope for a cure. At the age of 62, I hope that my good health will not be compromised by the transplant procedure. Most stem cell donors are many years younger than I am, but an exact match is hard to come by.

It may seem like I have a wimpy attitude and I just need to suck it up. The fact is, I live a very sheltered life. My sweet husband protects me from all the problems of the world and my life consists of doing art, crafts, reading, and walking with my dogs. I can honestly say, I have no problems after seeing dozens of leukemia and lymphoma patients come to the clinic seeking radical bone marrow transplants.

Karen and I are staying with our youngest sister, Lois Crane, during the preliminary treatments. Today was Lois' birthday! I appreciate her hospitality and hope we can do a little more birthday celebrating tomorrow.

Tomorrow will be another day of chemotherapy for Karen and Neupogen shots for me.  Sweet dreams.

A Transplant for the Cure - DIY IV Treatments and a Blood Clot

A home health nurse is teaching Karen how to administer
the IV treatments for her fungal infection.

Karen and I drove into Higginsville on Thursday morning, October 22nd. It was a beautiful autumn day in central Missouri. We stopped at Confederate Memorial Park on the way home and I took some photos of the fall foliage in the park. (See the video at the end of this post.)

That afternoon a home health nurse came to the house to teach Karen how to administer the IV treatments with the tri-line that had been surgically inserted in Karen's chest. The IV treatments were necessary to fight the fungal infection in her lung. (Later tests showed that the infection in Karen's lung was viral, not fungal. However, the blood work showed signs of a systemic fungal infection so the daily anti-fungal treatments were still required.)

Karen posted the following message on Facebook with this picture on October 22nd;

Most of the summer I had to give myself shots in the stomach for a blood clot. Now I have graduated to giving myself IV treatments at home. This is the new little toy I get to play with for the next week and a half.

Since the stem cell transplant had been postponed indefinitely, I decided to fly back home to Houston the next day. The weatherman in Houston was predicting storms for the weekend, so I wanted to beat the rain.

The next few days were not very good for Karen. She started running a fever and experienced severe pain in her neck. She had to make several unplanned trips back to the Bone Marrow Transplant Clinic for treatment. She posted the following message on Facebook on October 26;

My adventure continues. Saturday afternoon I began to run a temperature and feel chilled. The preceding Tuesday I had received a tri-line catheter in my chest and on Wednesday, I had an endoscopy done of my right lung to check out something they saw on the CT. Thursday, the right side of my neck began to be very sore. By Saturday, when I cough, it produced a sharp pain in the right side of my neck. I called the clinic Saturday night and was advised to come in on Sunday morning. We ended up being there all day. They took a number of blood cultures, and ordered an ultrasound of my neck. Sure enough as they expected, there is a large blood clot in my juggler vein due to the line being placed. They gave me a shot of antibiotic and a new round of blood thinners.

So, now I am back to giving myself a shot in the belly twice a day and that iv antifungal medication for the lung infection.
It is now Monday morning and I did get a good nights sleep and feel some better with the aid of extra strength Tylenol to take the edge off the pain in my neck when I cough, which has not happed much yet this morning - YEA! Have to go back to the clinic today and tomorrow. That's it for now.

We are now waiting for the doctors to set a  date for the stem cell transplant. We are very optimistic that this procedure will give Karen's immune system the boost it needs to defeat the chronic lymphocytic leukemia in her body.

Karen posted the following message on Facebook on October 30th;

From my doctors appointment yesterday, I found out it will be the middle of November before we can reschedule the transplant. Need 4 weeks of treatment for fungus among us, and then try again. Will do another CT next Wednesday to check on lung issue. Still cough some, sometimes better but definitely not worse. Even though they will not let me get out and play in the dirt, which is my favorite thing to do, I can enjoy cutting up peppers for winedrizzles that I grew in my garden this summer.
They tell me because of the Campath, my B and T cells are low and they are the ones that mostly fight viruses and fungus so I guess that is why I have had lingering cold symptoms all summer.

 

A Transplant for the Cure - A Tow Truck and a Prayer

Karen Luehrman and Janette Fuller at
Confederate Memorial Park, Higginsville, Missouri

Karen's car spent the night of October 20th in the parking garage at the University of Kansas Cancer Center. She called her car insurance company and discovered they would tow a car up to ten miles without an additional charge.

She decided to have the car towed to the Firestone Complete Auto Care at 1100 Kansas Avenue, Kansas City, Kanas.

Our mother went with us so that she could drive Karen home after the scope procedure at the hospital and I would drive Karen's car home when/if it was repaired.

Karen had an appointment at the Bone Marrow Transplant Clinic at 10:00 am. She would receive her IV treatment and then go over to the hospital for the surgical procedure to take a culture of the infection in her lung.

Karen said the tow truck would be arriving around 11:00 am, so I made a quick stop at the snack bar and then headed for the garage. I alternated between sitting in the car and pacing around the outside of the car. Each time I heard a truck engine, I got out to see if it was the tow truck. When Karen finished with the IV treatment in the clinic, I was still waiting for the tow truck. There had been a miscommunication between the insurance company and the dispatcher at Kid's Towing Service. The wrecker finally arrived at 12:45 and Karen signed the required paperwork.

The tow truck hitched-up to Karen's car, and I climbed into the passenger seat of the wrecker. I think I rode in a wrecker one other time, but it had been a long time (I live a sheltered life). The driver was a pleasant young Hispanic man with an iPad set up on the console of the truck running a GPS program. I told him that I was going to be a stem cell donor for my sister, and he said that his mother was a cancer survivor.

My heart sank as we drove out of the affluent residential neighborhood and into an older commercial/industrial area of Kansas City, Kansas. I had a map in my purse, but I had no idea where I was. I thought,

"How am I going to get out of here? Lord help me!"

I asked the driver if we were very close to I-70. He said the Firestone Store was only about a mile from the highway, and it was easy to find the way. He showed me exactly where to turn. I just had to turn left out of the parking lot, go through three traffic lights and turn left. I would go over a bridge and turn right at the light at the bottom of the bridge onto I-70 East.

We arrived at the Firestone Auto Care Center, and I went inside while the driver unhooked the car. Karen had already talked to the manager about the radiator problem. I sat down and waited for about an hour and a half.

The manager called me over and had a puzzled look on his face. He said, 

"I have some good news and bad news. The good news is that we couldn't find anything wrong, and the bad news is that we couldn't find anything wrong."

They ran diagnostic tests on the hoses, the thermostat, and the water pump. The only thing wrong was the radiator had run low on coolant. They refilled the coolant and just charged me $21.00.

A young mechanic came in and said that he used to work at Shafer's Car Care Center in Higginsville. It is a small world.

I reviewed the directions with the Firestone manager and slowly walked out to the car. I would be driving an unfamiliar car right through the middle of Kansas City. I was praying hard that the radiator would make it the 80 miles to get me safely home. I kept a close watch on the engine temperature gauge and white-knuckled it all the way back to Higginsville. (A week later Karen took her car to a Chevrolet dealership to be checked-out. They did not find anything wrong with the radiator, hoses, thermostat or water pump.) 

I made it! I got back to the house about 3:45. I called my mother, and she said that Karen was in the recovery room. They would be on their way home soon. Mom is not fond of driving in the city, but she did not have any trouble driving with Karen directing her.

Karen had two outpatient surgeries in the past two days. I think God put some good people in our paths during this time, and I am very thankful.

A Transplant for the Cure - Angels All Around You

Entrance to the Bone Marrow Transplant Clinic at the
University of Kansas Cancer Center

Karen's schedule was full of appointments for Tuesday and Wednesday, October 20th and 21st.
Our first stop was an out-patient surgery center in Overland Park, Kansas. We made a couple of wrong turns (we got lost) on the way to our destination, so we arrived at the center right at 10:00 am.
Karen would have a tri-line surgically inserted to facilitate the anti-fungal IVs that she would administer each day at home.

They called Karen back to the operating room and said that she would be ready to go in about two hours. I took this opportunity to call my former college suitemate and good friend, Ann Null. I knew she lived in the area, and I hadn't seen her in several years.

Ann and her granddaughter drove over to the surgery center and picked me up for a quick lunch. Since our time was limited, we went to the drive-through at a taco shop and went back to the surgery center to eat in Ann's van. We had a great time catching up and reminiscing with lots of laughter.

I walked back to the surgery center, and a nurse came out looking for me right away. She said Karen was awake and would be ready to go soon. Karen was very alert but was advised not to drive for 24 hours, so I was at the helm when we drove from the surgery center back to the BMT Clinic.

I am not familiar with the streets in the area, but Karen was a good navigator. I drove Karen's car about ten miles without any problems. We pulled into the parking garage at the Cancer Center and proceeded to go up several levels to find a parking space. Just as I was pulling into the parking space, I noticed steam coming from under the hood. Karen opened the hood, and the radiator coolant was spewing out onto the ground.

Karen was already late for her appointment to have another IV anti-fungal treatment. She had not had anything to eat since the night before so we ran down to the snack bar and got a sandwich and back up to the clinic for the treatment.

Karen knew much more about car repair than I did. She thought it might be a leaky hose or a faulty thermostat in the radiator. The first challenge would be to figure out a way to get the car back home or to a nearby repair shop. It was 5:00 pm before Karen completed her IV treatment. She decided to try to get a ride home and deal with getting the car repaired the next morning.

Karen called her long-time friends, Bruce and Linda Barnes, to help us. Linda was out of town, but Bruce volunteered to drive from his home in Blue Springs and pick us up and take us to our home in Higginsville, Missouri. He said that he and Linda had been trying to think of a way they could help Karen.

It was almost dark when we got home. It had been a long day. We were very appreciative that Bruce was willing to take us home.

The next day would bring more challenges and require me to get out of my comfort zone and venture into unknown territory. Looking back on those days, I thought of the old gospel song, "Angels All Around You".

In a world full of trouble we travel along.
God is our Father, we're on our way home.
If forces of evil ever close in on you,
Jesus has promised, this is what He will do.

Chorus
Put angels all around you to keep you from harm,
To guide and direct you, 'till you're safe in His arms.
With angels all around you, you're never alone
And you'll be protected 'till you make it home.

A Transplant for the Cure - A Fungus Among Us

Karen Luehrman is filling out paperwork and waiting to
review the CT scan with the pulmonary physician.

Our first stop on Monday morning, October 19, was at the University of Kansas Hospital/Office Building.
Karen had been suffering from a persistent cough for several months, so her doctor ordered a CT Scan of her lungs. The pulmonary physician showed us a picture of the recent scan and pointed out a filmy-looking white area in her upper left lung. He then showed us a scan from several months earlier. There was a noticeable difference, even to an untrained eye.

The pulmonary doctor said they needed to find out if this was a virus, fungus or bacterial infection in her lung. He scheduled Karen to come back on Wednesday so they could put a scope into her lung and get a sample of the tissues. This issue in the lung was the reason the stem cell transplant was postponed.

We then went over to the KU Cancer Center and checked-in at the Bone Marrow Transplant Clinic. I had a series of appointments for my pre-donor tests and Karen had other appointments on her schedule.

I was required to repeat the same medical tests that I had in May. The following tests are required of a stem cell donor:

Chest X-Ray
Labs (Blood Tests)
EKG
Health & Physical/ Consent Appointment

The first three tests were routine and uneventful. The "consent" appointment was an opportunity to meet with one of the transplant oncologists and discuss any questions or concerns. The doctor was a pleasant young woman with a British accent (I am not good at accents, but it sounded British to me). She began our conversation by saying;

"Your stem cells will help Karen so much. They will do her so much good".

I was happy to hear that the doctor was still quite optimistic that this transplant was going to happen. There had been several delays, but the doctor seemed  hopeful and optimistic about the entire situation. Sometimes a few well-chosen words can change everything for the better.

The doctors suspected that Karen had a fungal infection in her lung. They would not know for sure until they got the results of the scope procedure being done on Wednesday. However, they started her on an anti-fungal drug that had to be administered intravenously.

Karen Luehrman was receiving her first dose of
anti-fungal medicine with an intravenous injection.

Karen would have to take this anti-fungus medicine for at least two weeks, so the doctors scheduled a surgical procedure for a tri-line to be inserted in her chest so she could give herself the IV treatments at home.

I would be extremely squeamish about giving myself IV treatments at home. Karen didn't have a moment of hesitation about doing whatever it took to get well. She would not surrender to the disease.

Tuesday would be another full day of medical procedures. Karen would report to a day surgery facility to have the tri-line inserted into her chest and then back to the BMT Clinic to receive her IV treatment. The day ended with an unexpected challenge and a little help from a friend.

A Transplant for the Cure - Complications and Cancellations

Ellen Maxwell, R.N. Blood and Marrow Coordinator.
University of Kansas Cancer Center.

Karen contacted the KU Bone Marrow Transplant Clinic and told them that she would like to move forward with preparations for a stem cell transplant. I received the following email from the transplant coordinator on October 1st:

I  hope this finds you well.  I have just spoken with Karen who informs me she is willing to proceed with the transplant.  Are you still on board with donation? 

 She is coming back to discuss her decision with a physician  within the next few days.  They will be very firm about her commitment to this treatment. 

If she feels ready to commit we would be able to proceed with her pre-transplant work-up  within a few days.  

I am looking ahead to some potential dates…if you were here for your labs, etc on 10/19, Karen would consent on the 22^nd and admit to the hospital on the 23^rd then transplant ( and your collection) would be on the 29^th.  You could travel home the 31^st.  Your neupogen injections would be the 25^th thru the 28^th.

Please let me know your thoughts and please let me know what questions you have!

 

I was just recovering from a stomach virus when I got this email. I didn't think Nurse Maxwell REALLY wanted to know my thoughts on this day. I was disappointed that the medical tests that I had done in May would have to be repeated. That meant I would have to be away from home for two full weeks.

 

I reserved a ticket with Southwest Airlines to fly from Houston to Kansas City on October 17th and return on October 31th. I found that reserving flights with only two weeks advance notice could be a real challenge. I searched for an open flight that would not cost me an arm and a leg. I settled on a ticket flying from Houston to Kansas City via Chicago and flying back to Houston from Kansas City via Denver.

 

On October 13th, I was shocked to get the following email from Nurse Maxwell;

 

I am sorry but I am going to ask you to delay your arrival and I am cancelling your appointments for next Monday.  During the team meeting this afternoon this decision was made by the physician team.  I will let you know as soon as I can when we will be able to reschedule.

 

I called Karen to ask her what was going on with the schedule. She said she didn't know anything about this cancellation but would get back to me as soon as she could get some information.

 

Karen discovered that she had missed an appointment with a doctor the day before. The problem was, this appointment was not on her printed schedule. The clinic said they had confirmed this appointment with Karen on the telephone, but Karen did not remember getting a call.

 

At first it looked like the transplant would be postponed because of this scheduling blunder. This uncertainty was making me crazy. I did not want to cancel my airline reservations if the transplant was just postponed a few days. I made several calls but had trouble getting a satisfactory answer. It was finally decided that they would go ahead and harvest my stem cells on October 29th, EVEN IF Karen was not able to have the transplant on that day. My stem cells could be frozen and used for the transplant at a later date.

 

I had a good flight to Kansas City on October 17th and enjoyed some time with my family that weekend. Karen and I reported to the Bone Marrow Transplant Clinic on Monday morning. The doctors had reviewed the results of a CT scan of Karen's lungs that had been done the previous week. The scan showed something in her lung that had to be investigated before the transplant could be done.

 

The doctors decided that there would be a better chance of success if the stem cell harvest and transplant were done on the same day.

 

This was the second time the stem cell transplant had been cancelled. I was beginning to wonder if this transplant would ever happen. Karen posted the following message on Facebook:

 

News Flash! Yet another at least 2 week delay with the stem cell transplant. They found what appears to be a fungal infection in one of my lungs, so that must be addressed now before starting the transplant procedures. Pray fungal infection be completely gone in 2 weeks.

I stayed in Kansas City and accompanied Karen to her doctor's appointments this week.

A Transplant For The Cure - Super Woman

Karen's Campath treatments ended the last week of August. She was still feeling healthy, energetic and optimistic. She could work circles around most people half her age. She posted this photo on Facebook on August 15th with the following message:

It's amazing what one can accomplish with a weed eater and a corn knife:-).

She had spent the entire day cutting grass along the driveway and even along the county road in front of our mother's farm.

One of her Facebook friends posted;

Karen is super woman!

Karen posted the following reply to the many comments she was getting from her Facebook friends;

Thank you everyone for the compliments but I must pass them on to my Lord and Savior Jesus Christ. God is always good and has already provided everything I need for life and godliness. I still have 9 chemo (Campath) treatments to go. I have been exercising the God kind of faith by believing I received my healing when I prayed and my heart faith (which over comes the world) reaches out each day to receive health and healing in my body every day. I can do these things through Christ who strengthens me and be a vessel for the blessings of God to flow through to others. Glory be to God!

Karen was feeling so good from the Campath/steroids treatments that she was reconsidering her decision about having a stem cell transplant. She believed that God was restoring her health and she hoped to manage the disease and continue to live an active lifestyle.

A follow-up bone marrow biopsy was done at the University of Kansas Cancer Center on August 31. Karen received the results of the biopsy on September 10. This is her Facebook post about the biopsy results;

Here are the results of my latest bone morrow biopsy: NEGATIVE for Prolymphocytic leukemia. Another words, the aggressive form of lymphocytes are all gone!!!
The chromosome analysis shows only one abnormal metaphase as opposed to three previously. They say the clinical significance of this is unclear so they say it is suspicious for a low level of residual disease.
Blood counts continue to come back up and the blood culture showed no bacterial infections in my body.

That was the doctors report. He did admit it was a good report as he walked out the door.

Karen was in remission for the third time. She told her doctors at the Bone Marrow Transplant Clinic that she had reconsidered her decision to have a transplant so they referred her to an oncologist who would help her manage and control the disease. She had been off the steroids for a month and her energy level and overall heath had significantly declined. She had one appointment with this new doctor and posted the following message on Facebook the same day (October 4);

This is the sign at the entrance to the Bone Marrow
Transplant Office (BMT) at the University of Kansas
Cancer Clinic.

Hello FB friends and family. My last report was good. I have decided to go on with stem cell transplant for the cure. I do not know the exact time frame yet but expect to be admitted to KU hospital 3rd or 4th week in Oct. I will be in hospital approx. 3 weeks. Then I have to stay within 30 minutes of the hospital for 100 days. I will make plans to stay at Hope House in downtown KC during that time but I must have one care giver there with me 24 hours a day who can drive. The tentative time frame looks like
from the middle of Nov. to early March that I will need help. Message me or call me if you have some availability and would like to help. Thanks.

The new doctor emphasized that a stem cell transplant is the only hope for a cure. Karen had a familial donor who was an exact match and health insurance that would pay for the procedure. These are advantages that many people who are living with chronic lymphocytic leukemia do not have.

The date for the second attempt at a stem cell transplant was set for October 29. As the donor, I was on high alert and made plans to return to Kansas City