Janell is 50 Days Old!

Janell has been progressing well according to the doctors and the blood tests.  Her neutrophils and white blood cell counts have been very promising.  She still has to be very careful regarding her contact with others.  Therefore, she cannot go shopping at crowded, enclosed buildings like Costco, or attend functions in close contact like church services or concerts.  Early morning trips to the open air Yakima Fruit Market are fine.

She has slowly but steadily been building up her stamina.  She struggled with walking a "1/4" block.  She has now moved to being able to walk around a four block square of our neighborhood, about 1/3 of a mile.

The great news is that she has been released from Seattle Cancer Care Alliance back to her original oncologist at Cascade Cancer Care located within Evergreen Hospital.  The original plan was for her release after Day 60, but it happened at Day 44.  The blood draws and weekly visits still occur.  Now we are focused on strategies to get her through the upcoming cold and flu season without getting sick.

CAN SHE HAVE VISITORS?  Yes, as long as you are not coughing, wheezing, have a runny nose, etc.  It should also be noted that she "fades" pretty quickly and has to rest quietly a number of times during the day.

We really appreciate the prayers, cards and thoughts you all have sent.  Included here are pictures from the beautiful and abundant "care package" Janell's work sent.  In the pictures you see our oldest son, Geoffrey, during his visit up from the San Diego area to "check on MOM" and our grandsons, helping Janell open her gifts.  We also appreciate the Dinners Ready gift accounts established by Inglemoor High School Staff and by our Holy Apostles Greek Orthodox Church Family.  They have been a tremendous help.

Thank you all for your caring and love!

What's Happening at Day 35

It has been awhile since the last post.  SORRY!

The days have been melting into each other as we navigate this time period.  As caregiver, this is an extremely critical time to monitor Janell's progress.  I take her temperature multiple times a day.  If her temperature lands in the range 99.4 f/37.4 c to 100.8 f/ 38.2 c, then "all systems" are on alert.  I make calls to Janell's team nurse and I start an every 30 minute monitoring protocol.  If her temperature come close to 101.2 f/ 38.4 c, then we are on our way to the hospital.  THE GOAL = NO HOSPITAL VISITS!

I keep records of her temperature, gather copies of her labs, monitor her bodily functions, and the preparation of her foods.  She also receives at home intraveinous hydration with medicines infused in the hydration.  I have included two pictures showing the three sizes of bags that I hook up to her at home.  They range from 250ml, 500 ml (both beside the ruler) to 1000ml, shown inside the specially designed back pack for hanging the hydration bags and holding the portable hydration pump or the "fanny pack for the smaller bag.  We have been trained how to read the bag instructions, prime the pump and program the pump for the correct rate of hydration.  If Janell receives the hydration too quickly, then the medicines in the hydration fluid will cause much havoc and we are then calling 911.  THE GOAL = NO HOSPITAL VISITS!

It seems like a small thing, but Janell had the shivers.  You can re-call when you felt cold inside and shivered.  It is something I have always toughed out.  In Janell's case, I called the on-call charge nurse to report the situation.  I was asked a series of questions for which I had the answers right in front of me.  Remember those lab results I collect?  I read off certain portions of those result from the day before, which saved time in the diagnosis of the situation.  Questions like "What is her white (blood cell) count?", " What are her neutrophils?", were asked and I answered based on the two page labs I was reading.  The results were a dose of tylenol and continued monitoring.  I met the goal so far  = NO HOSPITAL VISITS!

That's all for day 35!  Stay tuned for more!

DAY 17 of the Journey! HURRAY!!!

Well.......SHE'S HOME!!!!!!!!!  After two weeks at the University of Washington Medical Center (UWMC), Janell has been released to come home.  The staff at the UWMC were phenomenal in their professional and personable treatment of Janell.   BRAVO!!!!!!




This  picture shows Janell dozing as she is "reading" that novel on her lap.  Notice all of the hanging bags and machines for her various IV's.  There are bags above the machines, hanging on the sides of the machines and hanging behind the machines.  Can you imagine having to drag that IV pole with you where ever you would go?  Janell did it with patience and grace.  (This is the picture I'm in trouble for posting when she sees it!)



This next picture is a portrait of patient ( excuse the pun!) Janell waiting to be discharged on Monday (7/19). Notice, there are no IV's, no tubes and no IV poles. The beautiful shawl she is wearing is a cozy prayer shawl created by Judy Bethea.  

 Here you see her gifts and cards.  Thank you!  They helped her spirits to maintain that fighting attitude, knowing that she is supported by you in this journey.    You also see her bags of clothes from her closet that she wanted so she could look her best and feel that there was some normalcy to her life.                        

You can imagine who transported all of this stuff from home and back again for her.  A person on the elevator gave me a curious look seeing me loaded down with all of these bags.  After sharing that Janell was going home today and referring to the load I was carrying, I quipped, "This is the reason she takes me shopping!"

This last picture shows her inside the elevator leaving the NE wing of the  8th floor she was restricted to for two weeks.  Notice the "reserved" smile of elation.  She later indicated that she wasn't going to celebrate until she was in the car and on the street driving away.  Then she would know she was not dreaming.

It is sooooooooooooooooooooooooooooo good to have her home!  Now to get serious about my caregiver duties and your questions about possible visitations.  But that is for another post.

Days 11 through 14 of the Journey

Could it be?  Have they started to appear?  YES!
The stem cells have started to en-graft and create white blood cells.  The few white blood cells that have been created have zeroed in on Janell's throat and mouth to fight the mucositis and start the healing process.  Mucositis is the result of the powerful chemo killing rapidly growing cells of the gastro-intestinal tract (mouth, throat, esophagus).  The tongue, mouth and throat become inflamed, raw and white in appearance with tiny sores and blisters.  When the white blood cells start appearing, they rush to these areas and start fighting.

The results.....she is able to swallow with a little less strain and pain.  She is able to drink water slowly and to eat soft foods (very slowly).  The pain and nausea are still there, but is being regulated by intravenous medicines.  These medicines can be very sedating, especially when her medical team is trying to get her pain down from a 10+ to a 2 or 3 on a scale of pain from "Zero to Ten."

Janell is still very tired and naps quite frequently.  It is entertaining to see her hold her book on her lap, gaze at the page and drift off to sleep.  Then one of her IV regulating machines will BBBBEEEEEEPPPPP, startling Janell awake.  I will include a picture with the next post which she doesn't know I took.  (Yes, I'll probably get in trouble when she gets much better, but that is OK!).  She has been on page 139 in her book for the last four days.  I have gotten into her bed beside her and read further to her, but she doesn't remember what happened because her head gently falls onto my shoulder and she quietly snores.

I praise GOD for the opportunity to see humor in all of this and to be able to lovingly tease her.

Day 7 of the Journey

Right now I am looking at Janell lying in the hospital bed with oxygen tubes, four IV bags hanging from her IV pole and her feet elevated to reduce swelling.  She dozes and lightly sleeps due to the pain.  Her throat has constricted to the point that she cannot eat and three more IV bags for nutrition will hang from her pole.  She has had two blood transfusions and three platlett transfusions.  They are working hard to help her body out. 

The doctors say that this part of the journey might get worse since Janell is at ZERO for her immune system.  HOWEVER, they are expecting that sometime between Day 10 and Day 14 her stem cells will engraft and she will start to turn the corner to being able to eat again.

The nurses are superb.  They are personable, professional, caring, and excellent in explaining the "why" for various procedures and protocols.  We enjoy interacting with them.  BRAVO NURSES!

Tonight, I am staying with her, sleeping by her side on a cot.  Picture this... Janell has oxygen tubes and I have a CPAP machine (I use it while sleeping to cut out the snoring or as Janell calls it "The Symphony of the Diesel Trains"). We will both be sleeping in the same room with oxygen masks...our duet Darth Vader impersonizations.  I am glad no one will take pictures of us to post on this blog!

Day 4 of the Journey

Can you imagine what it is like being married to a four day old you have known for 42 years and have been married to for 35 years? WOW! What a thought!

Janell's body is on target by doing what it should be doing.  Her immune system is primarily gone.  She is being supported by her collection of medications.  With that being said, we went in for our regular blood lab draws and the check-up by her team nurse and physicians assistant.  After about ten minutes, they agreed that Janell needed to go to the hospital right then.  They made arrangements for her room and I drove her over to UW Medical Center.

Why is she in the hospital?  Janell is having an increasingly hard time swallowing.  She is not able to keep her food and medicines down consistently.  That is one of the criteria for being admitted to the hospital without an immune system.  Janell currently receives her medications and hydration through IV.  There are four IV bags dripping into her veins as I write this blog.  She just finished peeling a handful of grapes and eating them.  She is determined to keep eating orally as long as she can.

When she is not eating, she is looking out the window.  This time we have a room on the water side of the hospital.  The view is wonderful to share with each other, which we are doing right now.  Hmmmmmmmm...... she just drifted off to sleep again.  She does that more often, daily. 

Before I end, I want to thank two wonderful groups of people:
Inglemoor High School staff has generously provided us dinners through Dinner's Ready for a few months.  They are delicious selections and have made my caregiving much easier.
Holy Apostles Greek Orthodox Church has organized work parties to weed and maintain our back yard.  They have done a superb job and have freed me up to focus on Janell.

We really appreciate Inglemoor High School and Holy Apostles Greek Orthodox Church.  Thank you for your love and support.

HAPPY BIRTHDAY?

Today started for us at 7:30 a.m. with a blood draw at Seattle Cancer Care Alliance (SCCA).  The lab nurse drawing Janell's blood, looked at the protocol orders and asked her if she was receiving her stem cells today?  Janell responded affirmatively.  The nurse drew the blood, then smiled and said "Happy Birthday" as we left the lab.

Did I hear that right?  Janell's birthday is November 26th, a fact Janell repeats multiple times daily as well as spelling her full name for nurses and doctors.  This is done for cross check reference that the right medications and blood products are being given to the right person.

On the fifth floor, the "Infusion Floor," Janell was checked in after repeating her birthdate and spelling her full name.  The nurse greeted us and proceeded to explain what would happen and it happened that way.  From 8:00 a.m. until 11:00 a.m., Janell received continuous IV hydration and IV medications while she slept.  Then at 11:00 a.m., her stem cells were brought to the room in a sealed metal container to keep them frozen.  They were thawed in a special bath to bring them to body temperature and then set-up for infusion back into her body.  Very croggy, Janell continued to sleep through.

Father Tom Tsagalakis, our priest from Holy Apostles Greek Orthodox Church, was present.  Right before the stem cells entered Janell's body, he prayed, anointed her body with oil and blessed her.  After 20 minutes, Janell received all of her own stem cells back.  During that process, Janell became very nauseated and extremely hot, a "normal re-action"to the process.  That gave me a moment to pause and think about the power of life God has placed in the blood.  Again, Janell was wished a "Happy Birthday" when the process was completed.

About an hour later, one of the nurse assistants, who attended to Janell yesterday, saw me in the hall and asked how Janell was doing today. I told her that Janell had just received her stem cells.  She said with surprise,"I didn't know today was her birthday. Oh, Happy Birthday."  I asked the nurse why this was considered Janell's birthday.  She explained that people receiving their stem cells back are actually being brought back to life.  She also shared that in a year, Janell, like little babies, will be receiving her "infant" immunizations because her system is new without those protections she received as a child.

At 4:30 p.m., we left SCCA, after five hours of observations, tests and more continuous IV hydration.  I rolled Janell out in a wheel chair.  In the elevator, one of the SCCA staff we have seen on numerous occasions, asked how a very tired looking Janell was doing.  I indicated that Janell had just received her stem cells today.  The staff member's smiled and said "Happy Birthday!"

So next year, when our twin grandchildren are 2.9 years old, I am going to throw their grandmother her one year old birthday party for her strength has truly been renewed like an eagle's.

This first picture shows the lab technician preparing to thaw the double bagged stem cells.  The next picture shows the cells being brought to body temperature.

This picture shows the cells ready to enter Janell's body after Father Tom's prayers and his anointing Janell with oil.   Thank you God for giving me more time with my beautiful, precious Janell!