Happy Birthday 2011!

Glory to God!  It has been a year since Janell's stem cell transplant!  And she has hair!  Here you see her with our sister-in-law, LaVon Gilmore, and one of our twin grandsons, Mister.  Just think, her grandsons, 2 1/2 years old, are older than their grandmother :)!

Janell just had her first set of immunizations just like a one year old infant would have.  It is amazing to think about her journey so far in terms of starting over with a new immune system like a baby.

For those of you old enough to remember, we even sang the Sheriff John Birthday Song:
"Put another candle on my birthday cake
Come on and take some birthday cake!
Put another candle on my birthday cake,
I'm another year old today.

I 'm going to have a party with my birthday cake
And when I do, a wish I'll make.
Put another candle on my birthday cake,
I'm another year old today.

(The song continues, but I'll end it here)

So please join me in wishing Janell...

HAPPY BIRTHDAY!

Re-staging and Follow-up

Greetings!  Since the last posting (August 22nd), I've increased my walking from 1/3 mile to about 1-1/2 miles.  This has helped tremendously with my stamina, though I'm still in the world of fatigue.  The doctor released me to return to work for a few hours per day on September 1st.  I'm up to six hours now.  I still have to be careful--avoid crowds and rooms full of people--in order to minimize the risk of infection.    Recovery continues at its own pace.  And I'm getting hair again!

For multiple myeloma, a re-staging of the disease is done about 80 days post stem cell transplant.  So on September 27th I had another bone marrow aspiration and biopsy to see how much myeloma (abnormal plasma cells) is present.  

Today, day 365 from my initial diagnosis, I got the results: There is "...only a minuscule amount of abnormal plasma cells" in my bone marrow!  Hallelujah! and Yey!  There are still a couple more tests to pass, but that was the big one.  Next comes follow-up, which will be a low dose chemo that is taken orally.  It's the same drug I was on at first, but a much lower dose.

From here on there won't be much happening in comparison to all new experiences and battles up to now; and that's a good thing.  So blog postings will be sporadic from here on out.  This war on multiple myeloma continues, but the enemy has been severely weakened.  Thank you for all of your prayers, healing thoughts, blood donations and other gifts.  Thank you for your visits, phone calls, and e-mails checking on me.  Thank you for joining me in fighting this war.  I'm not alone!

Peace.

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!