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!

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!

Today...The Transplant!

Today, Janell receives her stem cells now that her bone marrow has been destroyed along with the multiple myeloma cancer.  The results now = no immune system to fight off infections.  

Over the next three to four weeks period,  the stem cells will create new bone marrow that will manufacture clean blood plasma and blood cells for a new immune system.  Without this transplant, Janell would die from the simple infections we fight off daily with our healthy immune systems.

The following is the "Stem Cell Blessing" that we received from one of the chaplains at the University of Washington Medical Center.  It is a blessing Janell and I are praying today.  We invite you to join us.

STEM CELL BLESSING

We gather today to celebrate a new beginning, a time of special grace for Janell, and for those she holds dear in her heart.  We have come to give thanks for the Gift of these cells, for the gift of life and for all the ways in which Janell has already been healed and blessed.  We have come to ask that these Stem Cells be blessed by your holy tenderness and compassion.

Let us pray.  God of Abraham, by your mercy and the power, we ask you to bless these Stem Cells.

Lord, hear our prayer!
Infuse them with your strength.
Lord, hear our prayer!
Infuse them with your consolation.
Lord, hear our prayer!
Let them heal all in Janell that is in need of healing.
Lord, hear our prayer!
That each cell may be filled with forgiveness.
Lord, hear our prayer!
That each cell may be filled with hope.
Lord, hear our prayer!
That each cell may be filled with surrender.
Lord, hear our prayer!
That each cell may kindle the fire of your love in her.
Lord, hear our prayer!
That she may love you with all of her heart, mind and strength.
Lord, hear our prayer!
Lord, have mercy on us, in the name of your son, Jesus Christ, the anointed one and His anointing.
Lord, hear our prayer!

Closing Prayer:

Lord, we offer up to your hands any fear or anxiety that Janell or any of her loved ones may be feeling.  Take that fear Lord, and in its place fill her heart with your peace, the peace that the world cannot give.  Protect her from fear and anxiety and let her whole body bathe in your healing arms.

We pray in gratitude for the gift of these stem cells.
We pray in gratitude and ask blessings for all the staff who have or will be part of her care.

O Lord, look upon your daughter and servant, Janell.  Touch her with your embrace. That she may have the grace to bear whatever pain or discomfort may come.  That she may be filled with your compassion, peace and love.

In the mighty name of Jesus!
Amen!

Days 3, Day 2... The Big Fight is On!!

 "Kick butt Janell!  ...Just put on your boxing shorts and you'll be good to go!  Take care and fight like hell!  This is the one time your mom would tell you to fight dirty, whatever it takes baby!" --Tracy 


So ready or not, here goes.  


Tomorrow (Day 2) I get one more dose of the conditioning drug that Geoffrey referred to, and then a high dose of the toxic chemo, melphalan.  The delivery of those drugs takes a combined total of 33 minutes, but then there will be hours of observation and pumping with IV fluids to wash the melphalan out.  That means 24 hours of IV fluid, that my most trusted and competent rear admiral Geoffrey will keep going for me.  (We took an IV pump class yesterday to learn how to operate the pump.  And I must say that my working at WSIPC has certainly helped me not to be afraid to program it!  Thanks WSIPC!)


Here's a picture of Geoffrey and me, (sporting my new non-hair-do) and a picture of me.

Here are some pictures of me in my ultimate fighting gear that my oldest son, the doctor - Geoffrey got for me at the beginning of this battle.  

Thank you all for joining in the fight with me with your prayers and healing thoughts.  I couldn't do it alone.  Love to all.


Peace,
Janell

Latest BREAKING NEWS!

IT'S HAPPENING!!!!!!!   The time is now for the long anticipated procedure.

• Tuesday, June 29..... First dose of conditioning drug
• Wednesday, June 30.....Second dose of conditioning drug and the large dose of the major chemo to kill the cancer and the bone marrow.
• Thursday, July 1.....The cancer dies as well as the bone marrow finishes dying = NO IMMUNE SYSTEM!
• Friday, July 2 .......The stem cells are re-introduced into Janell's body and monitored over an eight hours time frame.
• Saturday, July 3......The start of long 100 days road to re-building the bone marrow so she has an immune system = Isolation and restricted activities at home. 

 Thank you for your prayers!

Janell's New Look

As we get closer to the actual transplant procedure, Janell's body is responding extremely well to the treatment.  That also means that her hair has responded.  Although none of her locks have fallen out, they were holding on by "a hair."  Janell decided to have her head shaved and to not wear a wig.

I had the privilege of performing that task.  I told her I would cut her hair, shave it, massage her scalp and moisturize it.  She agreed to let me do exactly that.  The process went smoothly with a very stoic Janell awaiting the final results.  SHE LOOKS STUNNING!  (Pictures are forthcoming as soon as she gives the OK.)

After the her new beauty treatment, I took her on a "scavenger hunt" throughout our home.  In various locations (closets, cabinets or drawers),  Janell found a small gift bag.  Inside was a note expressing what she means to me plus a pair of custom made earrings.  Yes, I made each of the seven pairs that she received.  I have included a picture of four pairs.

Janell is a phenomenal woman.  I am blessed, that out of all of the men in the world, she said "YES" to ME, thirty-five (35) years ago.  God is soooooo good!

Got 'er Done!

What happened earlier today with Janell's stem cell collection?  How did it go and how is she?
Pictures speak 1000 words.  We have about 6000+ words to share with you.


Janell was hooked up to an Apherisis machine used to extract her stem cells from her blood stream. She is pointing to the tube that is filtering out the stem cells.

Janell had many tubes hooked up to her Hickmann Catheter and the Apherisis machine.  The machine extracted about a cup of blood outside her body at any one time, extracted the stem cells and returned the blood back into Janell's body.  The picture on the right shows the first set of stem cells being funneled into the collection bag.


The process normally takes about four to six hours.  Remember Janell's severe hip pain?  That was an indication of her strong response to the growth hormones to stimulate the production of the stem cells.  Because of her high production, the process only took three hours.

The picture on the left shows the bag of stem cells.  The goal as for a number of stem cells (measured in the millions per liter of fluid) was "10."  Janell produced "30.81" today. They got all that they needed in this one collection.  Glory to God!

The picture on the right shows Janell,  a remarkable and beautiful woman during the process. The book she is hold is The Immortal Life of Henrietta Lacks by Rebecca Skloot.  This woman is responsible for the cancer treatment drugs benefiting the people around the world.

Thank you for your cards and your prayers.  Please continue to pray as we move into the next phases of this journey.  Our prays are for your continued health and wholeness in body, spirit and relationships

Gettin' 'er Done III

Last night while resting and knitting in the recliner I was struck with a sudden and excruciating pain in the hips; and ascertained that it must be the bone pain that I was told was a side effect of the nupagen injections.  I took a powerful pain pill.  That only took the edge off so that I was able to get to sleep!

Ann picked me up this morning to take me to SCCA for labs and clinic evaluation.  When I told the doctor and nurse about the pain, the biggest grins I've seen in a long time broke across their faces!  They said that the pain was a good sign that the stem cells themselves have shown up!  So back to the lab for another blood test to confirm.  The target number for stem cells is 10.  At about 1:00 p.m., Geoffrey answered a call from the nurse at SCCA who I saw this morning.  She said that my number resulting from the test was 43!!  So tomorrow, I'm scheduled to go to SCCA at 8:00 a.m. to begin the stem cell harvest!  Geoffrey is charging his camera as I write, to take pictures so that we can share this long awaited milestone with you.  More later, and probably via Geoffrey's prose.

Gettin' 'er Done II

Getting closer!  Last Tuesday evening through Saturday night were spent hooked up to IV bags of chemotherapy drugs and hydration.  Sunday I received 2 units of blood over an 8-hour period, got my first neupagen shot and went home.  This week, Geoffrey is taking me to SCCA daily for blood draws, clinic evaluations and neupagen shots.

Invisible results:   My white blood cell (WBC) counts are now falling; and in my case, that's good!  As of today's blood draw, my neutraphil count (the WBCs that provide us with immunity)  was down to 9 from 18 on Monday--well on the way to 0.  That's why for the time being I have to stay away from gatherings of people.  Somebody in the mix might be coming down with a cold; and that would be dangerous for me at this point.

Visible Results:  I didn't get sick from the chemo like anticipated, and so far I still have hair!  While in the hospital, I took 1 - 3 mile walks around the halls.   Right now, I'm very fatigued, and haven't been sleeping much the past couple of nights.  (Suggestions welcome.)

What's the next milestone?  After the WBCs bottom out, they'll start to climb again, thanks to the neupagen shots.  This signals that little baby stem cells are generating, and spilling into my blood stream.  When that count reaches the magic threshold, tests will be done to make sure that it's really stem cells.  Then, the stem cell HARVEST!

How's Geoffrey holding up?  This adventure is taking its toll on him--he's my first line of defense.  There's a lot that has to be done--maintaining a cleaner than normal environment in the house, especially kitchen, flushing my central line, changing the dressing on my Hickman catheter--but he has courageously risen to the challenge!  He is so vigilant and takes such good care of me.  He gets me to my appointments, asks questions and doesn't stop until he understands the answer.  He monitors my medicines, cause sometimes I get mixed up.  I trust him with my life.  Thank you Geoffrey!

And many thanks to all of you for your concern, interest, notes, healing thoughts and prayers.  More later as this adventure unfolds!  Peace!

Gettin' 'er Done!

Hi everybody!  I'm not quite as poetic or introspective as the persona Geoffrey has designed for me, but want to let you know what's happening from my own ten fingers.  Geoffrey and I met with the attending physician today.  He gave us the results of the tests I've taken for the past week and a half.  Blood counts are good, kidney & liver function are in excellent order.

After the chemotherapy I've had to date, the monoclonal protein (or M-spike:  a marker for multiple myeloma) is at 1.4, down from 8.9 when I was first diagnosed.  The amount of plasma cells in my bone marrow is 20-30%, down from 80% when I was first diagnosed.  While both those are positive results, it's not as low as the medical team had hoped.  Normal for both of those is below 1 for the M-spike, and 2% for plasma cells.

So tomorrow morning at 9:00 a.m., I'll check into UW Hospital to begin the 5-day course of continuous chemotherapy mentioned as a possibility in the last entry.  We were told that this will result in the white blood cell count plummeting,  feeling sick like a bad flu, cause mouth sores and make my hair fall out.  The great news, though, is that it will also kill those plasma cells that are still too plentiful in my bone marrow.  On Saturday, the plan is that I'll start getting the growth factor shots to mobilize the stem cells!

After my blood counts recover the stem cells will be extracted then on to transplant.  When will that be?  Whenever my blood counts recover (date unknown, but the average time that takes is around 30 days).  Yes, it's scary.  But I'm glad that I can get this done now, rather than having a week or so to dread it.  It's not getting done as quickly as I had hoped or would like, but we're moving forward!  We'll keep you posted.  Geoffrey will attach a picture of me with my new no-hair-do when that happens.  Maybe even with the 2 of us!  So stay tuned!  Thank you all for your continued prayers and healing thoughts.  I so appreciate all of you.

Peace!

Oh My! What Just Happened?

About thirty minutes after the last post was published, we met with our medical team.  The tests results were in and looked very good, except for the bone marrow test results, which were expected to be ready by Friday or Saturday.     The bone marrow test results will provide the final data that will give the team a complete picture of my cancer status and will dictate the final recommendation for the next treatment regimen. Dr. Fero shared with us that my cancer protein level was currently at 1.4 again.  To get it as close to zero as possible, my medical team is seriously considering using an aggressive chemotherapy protocol based on what they think the bone marrow test results will reveal.

What does that mean?  I would be admitted to the University of Washington Medical Center for five days, receive the aggressive chemotherapy treatment and be monitored 24/7 in the hospital.

When will this happen?  We will find out on Monday, May 24, during another planning meeting with our medical team when we will receive the results of the bone marrow test.

What does this mean for the stem cell transplant?  That would postpone that step in my treatment for thirty to forty days after my hospitalization so that the aggressive chemotherapy can dissipate from my body and allow the stem cell extraction chemotherapy to act unhindered.

How do I feel about this?  I am very surprised and overwhelmed with this news.  I also want to get this process over with so I can get on with my life. I trust God's wisdom and His love for me.  I know that HE has blessed me with the best medical professionals to treat this specific cancer.  Therefore, "Lets get it done! Lets move forward and do what is necessary for the ultimate victory.  After all, I have a lot of living yet to do!"

May 1-19: Progress Continues

Janell has been going through a series of tests here at Seattle Cancer Care Alliance (SCCA).  Her blood counts, liver functions, lungs, dental, cardiac and cardio functions are strong and optimum.  The numerous blood draws are much easier for her with her Hickman catheter. 

Every day that catheter has to be flushed.  It is amazing to watch nurses doing that process over the last three weeks expertly and now say to you, "This is how you do it since you will be responsible for flushing her daily."  The degree of sterility in carrying out the process is an awesome responsibility and an extreme practice in concentrating. 

Think about how many surfaces you touch after washing your hands.  You touch the soap, scrub your hands, rinse turn off the faucet, dry your hands on a fluffy terry cloth towel, touch your eyes, nose or mouth, open the restroom door, touch your neck to scratch an itch, and then sit down to flush your loved one's catheter.  You re-contaminated your hands on the terry cloth towel, when you touched your face, touching the door knob and when you scratched that itch.  That was an eye opening revelation for me.

We have paper towels in strategic locations in our home and hand sanitizer everywhere.  Janell likes the lavender scented hand sanitizer so she can smell when it has been used.  When I prepare for the performing flushing process, I use hand sanitizer, get the box containing the supplies out, spray the top and handle of the box, and set out paper towels.  Then I wash my hands, dry with paper towels, walk to the table with my hands up like you see doctors doing after they scrub.  I get the different flushing syringes out, and the alcohol wipes.  I then use hand sanitizer again and start the flushing process which is actually very straight forward.  First you clean the tubing and tip of the catheter that is dangling outside the body with alcohol wipes, open the saline rinse syringe and push the contents into the catheter and then open the heprin syringe and push its contents into the catheter.  That's it!

It is amazing the amount of trust Janell has in me to be clean and not introduce any factors that will cause infection.  I take that responsibility very seriously and am committed to do my very best.

March 11-April 30- The Short Version!

Yes!  We are covering a large chunk of time in a short space.

At Cascade Cancer Center it felt like we were coming home to familiar faces and caring people.  My cancer treatment became aggressive with me getting interveinous treatments on a twenty-one day cycle.  The goal has been for me to go through three cycles and then see how things are going.

My cancer chemo treatment includes  : dexamethazone, doxol and velcade.  The doxol is given once in the twenty-one days cycle which is great!  It takes an hour for the chemo to be administered.  During that time I must keep my bare feet and bare hands on ice in order to prevent blistering and peeling on the bottom of my feet and on the palms of my hands.  I appreciate Geoffrey showing movies on his laptop during that time to get my mind partially off of my discomfort.

I had a powerport inserted into my right chest with a tube going through a large vein and stopping right above my heart.  This device is used to administer the chemo and to extract blood samples.  My arm and hand veins are thankful since they have all decided to collapse and not allow blood to be extracted for the needed blood samples.  I like the convenience of the powerport except for the on-going infection in that area that has lasted for about 3 1/2 weeks.  In fighting the infections, another a whole laundry list of drugs were added to my regimen of stuff to take.  Actually this can be seen as a weight reducing regimen since one can fill up with water and drugs and not have room for food.

I have also spent about three visits in the hospital on weekends to chemo treatment and emergency examinations due to reactions to the infection or to the drugs fighting the infection.  After a couple of specific chest x-rays, a blood clot was found in my upper chest.  Why did a clot appear?  Apparently my body didn't appreciate the powerport being inside my body, attempted to get rid of it, fought with all of its natural mechanisms available and created a blood clot in the process.  It is not life threatening, and is being treated and monitored closely. That also means I have more drugs to add to my diet.

Dexamethazone is a steriod drug that works in tandem with the other drugs.  I receive that four times within each twenty-one days cycle.  That also translates into "Super Woman" since I am not able to sleep, can clean the house, cars, weed the garden and bake four loafs of bread overnight.  Needless to say, in the morning my super powers have vanished and I become a mere tired (actually exhausted) woman ready to sleep for a week.

I do thank God for His mercy and grace in helping me day by day through this journey.  I also deeply appreciate all of your prayers, love and concern.  May God richly bless you all.

What's Happened Since the Last Posting?

March 5-10   Seattle Cancer Care Alliance

Janell had daily blood draws, bone marrow biopsy, gynecology visit, x-rays, scans, more blood draws, nutrition visit, dental visit and more blood draws besides the routine daily blood draws.

Goal: To get ready for the stem cell extraction, major chemo dose and stem cell re-introduction at the beginning of April.

Results:  The cancer protein level started rising from1.4 to 1.7.  Janell’s doctor at Seattle Cancer Care Alliance pointed out that Janell’s labs were great but it appeared she was in an unstable remission.  He indicated that he would like for her to go back to Cascade Cancer Center to have her doctor, Jane Golden, continue with a regimen to lower the cancer protein as close to zero as possible.

Our Response:  Yes, it makes sense to have the body in the best possible condition before proceeding with such a complex procedure.  The shock was paramount since psychologically and realistically we had prepared for this major step in the journey.  Now we are faced with a delay of that step two to four months.

Stay tuned for the late update for March 11-31!

Results of Blood Work

My blood work results are coming back in the normal ranges for the most part.  My cancer protein level which was at 9, a high level, is now at 1.5.  Praise God!

At SCCA, they give you a copy of your labs, which is great.  At home Geoffrey and I can sit down and look at them leisurely.  Out of the complete blood work panel there are only a couple of areas that are slightly above or slightly below the normal range.  Having these lab reports makes it great to create questions to ask the team and/or to do research on the Internet to find definitions and answers.

My kidneys had damage when I started this journey, although I wasn't having any problems.  Now they are fine and functioning normally as reflected in the lab reports.  The itching is still there but a treatment is forthcoming.  I also have a bone marrow aspiration procedure and bone marrow biopsy coming up.

Thank you for your prayers and your concern.

How am I doing?

I am tired a lot.  There is a substantial rash that has been itching constantly.  It is hard to sleep as a result.  I have come up with some remedies for it.  The nurse practitioner, Michelle, has prescribed a treatment in ointment and powder form for me to use.  The powder has cut the edge of the itching, making it bearable.

At Cascade Cancer Center I had a blood draw every week.  At SCCA, I have a blood draw every time I walk through the door, which is daily.  I have very small veins which are hard to access.  As a result I come out of the blood draw area looking like I have been on the battle field with the various bandages all over my arms from where I have been poked.  OUCH!!!!!!

Seattle Cancer Care Alliance Team

I am sorry that I have not kept up with the blog like I wanted to, so that you can know what is happening.  So the next few post are going to cover from the beginning of March until today, Sunday, March 20.


I was admitted to Seattle Cancer Care Alliance (SCCA) and placed on the ROSE colored team.  This team specializes in the treatment of Multiple Myeloma.  The lead nurse, Dot, was warm, welcoming, and humorous.  It was obvious that she loves what she is doing and that she does it well.

Michelle was the nurse practitioner who will be with my team for one more month before rotating onto another team.  The nurse practitioners are with a team for three months before rotating.  With the different procedures, like the bone marrow biopsy, she will oversee the procedure and will be present.

We even have our own scheduler, Jennika Littler.  This young lady is so very organized and detail oriented.  The weekly schedule we receive is broken down into days and the days are broken down into hours.  Each hour indicates what appointment we have, where to go for that appointment, what preparations we need to do for the appointment and who we will meet.  If the schedule changes, which it does multiple times either daily or weekly, I will receive a new schedule when I sign in for my daily visits.  It is a new meaning on "You've got mail!"  The other interesting thing about Jennika is that she was a student of Geoffrey in junior high school back in the late 1980's.

Our team is rounded out with a nutritionist, financial/insurance liason, social worker, and of course the attending physician.  In one of the upcoming entries I will talk about the attending physician.

What's Next?

I have been on two chemo therapies that are in tablet form.  My regimen has been to take one of the tablets every day for three weeks, skip a week and resume the protocol.  The other tablet I have taken once a week every week.  These medications have worked well for me.  Now I am being transferred over to Seattle Cancer Care Alliance (SCCA).

Wednesday, February 3, will be our first day as full time patient (me)  and caregiver (Geoffrey) at SCCA.  We will keep you posted on what is next because we really don't know.  We have a lot of questions,some of which we will share with you as time progresses.  Until then, love , joy and peace.

How Did I Find Out and What Happened?

On October 5, 2009, at 6:00 am, Geoffrey took me Evergreen Hospital because I was experiencing a severe bronchial attack.  At the same time in 2008, I was experiencing the same symptoms.  At that time I was hospitalized for 8 days.

This time I was hoping I wouldn't be hospitalized for that long.  The emergency doctor did the routine tests and gave me a strong breathing treatment.  I was improving quickly and things were looking up.  Around 1:00 pm, the emergency doctor indicated that their tests revealed I was very anemic, a statement I had heard many times before.  He indicated that they wanted to do more test and that the hemotologist would want to see me at 4:00 pm.

So Geoffrey and I remained in Emergency until about 3:00 pm.  We proceeded to another section of the hospital to see the hemotologist, who is also an onocologist.  She spoke with us and revealed then that she thought I had Multiple Myeloma, a white blood plasma cancer.  Tests were scheduled that next day and they confirmed her suspicions.  Immediately I was placed on a tablet chemo therapy which I have been taking at home.

I needed a blood tranfusion because my hematicrit level was so low.  That made a world of difference in my energy level.  I was also prescribed another medicine, Revlimid, to work with the chemo therapy.  The results have been great in terms of my blood levels increasing to the normal level.  The bad protein levels in my blood were drastically lowering.  The goal has been for the protein levels to reach below 0.1 or zero.  I have not reached that goal yet.

In the meantime I have been knitting away. 
 Here is a picture of the afghan I knitted for Geoffrey Allen, our eldest son.  I'll have Geoffrey (my husband) upload the picture so you can see the pattern.      

Until the next time...Blessings to You!