It is official

After 6 plus weeks for this hospital stay, one transplant and several obstacles later....

I am going home today!

Happy anniversary,Loren. I love you.

Looking Good

Our early Christmas miracle continues...

On Monday I was given clearance after a clean scope and no active GVH found to start drinking water again!  Water never tasted so good!  It took me about 5 hours to drink about a cup of water but I think my stomach had probably shrunk to the size of a lima bean.  Thankfully my gut has agreed with the food and each day I have been able to advance my diet to new foods.  Tonight I get chicken noodle soup!  Yesterday I had mashed potatoes for Christmas dinner and was thrilled.  As long as things keep progressing as they currently are I will hopefully be home soon.

Today marks 30 days since transplant and what a ride it has been.  I was talking with my friend Natalie today and we were talking about how this feels like somebody else's life, that somehow I will wake up from this dream.  I know that this is my life for now but it sometimes still feels surreal.  I never thought that cancer would be part of my life or sidetrack my life like it has.  I feel like it will take a good while to process all that has happened, everything I have felt and everything we have received from all of you.  

Hopefully 2015 will be a year of healing.  Love to you all!

#WendiWillWin

The battle with GVH continues

My battle with graph vs host disease (GVH) continues.  I feel mostly okay except for my gut which is where the GVH is hanging out.  We've been treating it for over a week with steriods with some effect but not the complete effect we need.  My colon and large bowel need to start working again and they are being very slow coming online.  AAARRGGHHH!!!!  This means I am limited to a diet of ice chips and occasional sips of water.  Don't feel bad....food doesn't sound that good right now.  I wish that it did.  Because of the GVH I won't be going home any time soon (at least within the week) so this year Christmas willl be spent at LDS hospital....still working out the details. But our familly will be together which is the most important part.
I am learning a lot about patience and faith and the strength that comes through friends and family.  There is power there to pull me out of dark places and to keep me out.  I am grateful to be part of such a wonderful network of people who are uplifting and loving.  Thank you for being my friends.

#WendiWillWin

update

No posts for the past little since i have had a rough litte bit.  Mucositis hit pretty hard and took the ability to swallow, talk, or sleep for several days.  The only way to get rid  of it is to have your white blood cells and neutrophils come in and then they can repair the sores.  I was very grateful to see those little neutrophils and to know that perid of pain pumps and suction would soon be over.

Unfortunately it was quickly followed by graft vs host disease. this requires complete gut rest for a few days...not a big deal, i haven't had anything to eat or drink for several weeks.  Graph vs host is treated with heavy duty steroids followed by slow introduction to food. Hopefully it will go quickly.
Thank you for all of your support.

#WendiWillWin

your help

Just a quick request....please pray specifically that i  can find a way through this nausea.  specific prayers have worked in the past and I could use some now.   Thanks!

Shout Out to Your Heroes

Many times we go through life participating in our varied activities and building relationships with those people around us.  We are impacted and shaped by the people we know along the way including spouse, parents, children, siblings, extended family, friends, co-workers and many others. On occasion we take time to reflect on how they have made a difference in our lives and sometimes we let them know that we are grateful for the relationship we have.  Rarely, though, do we have the opportunity to hear from others how we have made a difference in their life.  Many times it takes a significant event for us to reach out to others.

As Wendi has been treated for leukemia I have had the uncommon experience of seeing, hearing and reading how so many people feel about her and the influence she has had on their lives.  It has given me a new appreciation for her and what a special person she is.  I think it has really boosted her spirits and given her strength a boost when it has slackened.

I agree with the many comments that Wendi is a strong person.  Before this experience we had been through some challenges where her strength of spirit showed through but were only warm ups to build her strength to get through this.  She has a great smile that she is willing to share with everyone.  She looks to lift others and help all to feel included and important.  At the hospital everyone who works with her from doctors to nurses and aides all look forward to the days that they are assigned to help Wendi because she has such a good attitude, knows them all by name, and tries to help everyone feel better.  She is the glue that holds our family together. She is our hero.

I would like to encourage everyone who reads this to reach out to their heroes and give them a hero shout out #heroshoutout.  Let them know how they have influenced you and made your life more rich.  It will be an unexpected and very welcome boost for them.

#heroshoutout
#wendiwillwin

Another Birthday and Happy Thanksgiving

In the transplant world, the day of your transplant is your second birthday.  So from now on, my second birthday is 2 days after Callie's birthday, on my neice Hillary's birthday and could occasionally be on Thanksgiving.  Happy Birthday everyone!

Today went well just as expected.  After a few pre-medications Scott's stem cells were hung on my IV pole about 1 pm. By about 1:30 we were done except for some regular monitoring.  Scott is my hero and gave me about 9 million(!) new stem cells. Almost a record for one day of collection!  

It has been wonderful to emotionally turn the corner from beating back cancer to healing from cancer.  Time will tell how much of a rollercoaster we are on but like my doctor reminded my today....I will take what each day gives my and remember that the next day can be completely different.

I am grateful this Thanksgiving for modern medicine and those who know how to use it to benefit me and my family.  I am grateful for all of you and your prayers and words of support.  They lift me more than you know.  I am grateful for a family that truly are friends.  I am especially grateful for my brother, Scott for Emily, Callie and Elizabeth and mostly for my rock, Loren.  I am grateful for a Savior who knows each of us and what we are feeling and for a Father in Heaven who loves me.

Happy Thanksgiving!

Chemo is done!!!!

This final round of chemo before transplant is done!!!  Woot! Woot!  Two different medicines over the last 7 days.  Today is a rest day getting ready for transplant tomorrow.  Crossing our fingers and praying our hearts out that this will be the last chemo she has to go through on this journey.

The march to stem cell transplant keeps moving on.  Wendi is now one day away from receiving her brother's blood stem cells that will start the long process to healing.  Unfortunately the countdown has been going slow as Wendi has been losing energy and fighting nausea more each day.  The last few days have been difficult managing the nausea as the medicines used make her very tired.  Her spirit continues to be strong as she faces the challenge of feeling poorly.

Even when fighting to keep her strength up and food down she is still the Wendi we know and love. The nurses have to measure everything about Wendi -- vital signs, weight, blood levels -- you  name it including her "output" in the bathroom.  She has a variety of nurses and aides that will measure the "output".  Yesterday she pointed out to me that she knows when the male nurse takes care of her "output" because the toilet seat is always left up after he is done.  Reminds me of the discussions I had with Wendi many years ago as I was being "trained" on proper toilet seat etiquette.

The docs here want her to do laps her a few times a day to keep her body strong.  After a few days here on this stay they came in a with a new program they are trying out.  They gave her a lanyard with step counter on it and a iPad that will keep track of the activity each day.  They want her to record 4500 steps a day.  Well they gave it to her and asked her to walk with the physical therapist and an aide the first time to see how she was doing.  They didn't know who they were messing with.  She took off at a good pace and logged 10,000 steps with the poor aide chasing her down the hall pushing her IV tree and the PT working to keep up.  Various people who work here commented that it was quite the site to see them cruising the hallways that afternoon.

Thanks for the continued prayers and support.  Wendi appreciates them very much and they help keep here spirits up.

If you have pictures of your Wendi's Fight Club bracelet or window stickers in action, please share them.

#wendiwillwin

T-7

The countdown is on!  7 days to transplant (T-7).  I am feeling good right now and just passing the time.  Nausea will come probably next week but for now I am receiving chemo every 6 hours around the clock for 3 more days and then I have a day of rest before another 2 days of a different chemo drug.  In talking to the nurse yesterday I relearned that my chemo targets fast growing cells therefore my bone marrow is a prime target.  In other cancers the doctors can only give so much chemo before it begins to affect your blood numbers.  With leukemia, the point of chemo is to bottom out those numbers so the doses of chemo are higher and hospital stays are mandatory. 
I did have the chance yesterday to meet some other patients on my floor.  They are incredibly strong and resilient!  I am blessed to be in this position with a strong body and a perfect match donor.  It is a rare thing....prayers are being answered and will continue to be.  
#WendiWillWin

More Rollercoaster Rides and a Plan

Loren and I looked at each other this week as we sat in the hospital room I had just been admitted to and commented that this is one crazy ride!  I got a phone call on Monday asking me to come down to the hospital and be admitted for at least one night.  The headaches which I had been having for the past 5+ weeks had changed and that made my doctors nervous enough to schedule a CT scan followed by an MRI.  Now they needed a neurologist to see me but the only way a neurologist can see a new patient quickly is to have the patient admitted to the hospital. (Insert your own comments on the healthcare and insurance companies here).  I was pretty sure that the headaches were due to the 5 spinal taps I had but my doctors wanted it taken care of quickly.  So, we sat in the hospital room, staring at each other and wondering what the neurologist was going to say.  After waiting for several hours the neurologist came and after a lengthy discussion of my symptoms she came to the conclusion that at least one of the 5 holes that had been put in my back was leaking spinal fluid and causing my severe headaches.  The best way to fix that is with a blood patch.  Since I am in remission and my blood is clean right now we decided to move ahead with the procedure the next day.  So, I spent a lovely night in the most expensive hotel in town and had the blood patch performed the next day.  I must have had a different reaction than most people...the procedure was fine but the rest of the week was horrible.  By Friday my headaches were gone but the pain in my back where the blood was injected was incredibly painful and is still not 100%.  After a rough week, I finally remembered what I had promised myself on Day 1...I was going to choose to be grateful.  I had forgotten that and the week was more miserable because of my attitude.  So today I am grateful that I don't have those horribe headaches any more!

The Plan
Now that I am in remission, we have a plan for transplant.  I will be admitted to the hospital on the morning of Monday, the 17th.  On Tuesday I will begin 4 days of chemo, followed by 2 days of rest and then 2 more days of chemo.  Yes, this chemo will be just as aggressive as the last round I had.  Then on the 26th, the day before Thanksgiving and continued on Thanksgiving day the infusion of my brother's stem cells will happen!!!  I am excited to be at this point in my treatment.  After the infusion, it is more of the same ride we have been on but with a twist.  I will need to wait for my numbers to come back up, which in this case means that my brother's stem cells are making blood for me!  The twist is that we will need to guard against but almost plan on some form of graft vs host disease.  This new twist will be part of our lives for at least the next 2 years.  Depending on the type and severity, I can have an extended stay in the hospital and/or be readmitted after coming home.  So, the rollercoaster ride will continue.  I am glad my family is with me as we go up and down...they are my peace and my sanity.

A Return to Church

As most of you know, I and my family are members of the Church of Jesus Christ of Latter-day Saints.  In our church we do not have any paid clergy and all of us at different times are asked to serve in different positions so that our congregation is taken care of and services happen each week.  For 1 1/2 years before my diagnosis I had been asked to serve as the president of the Relief Society (our congregation's part of a world-wide women's organization).  As a result of this responsibility I grew to love and care deeply for the women in our congregation.  I knew some of their struggles and mostly of their faith and love for their families and for Jesus Christ.  

With a diagnosis of leukemia there is no time to let your mind wrap around what this means to your family or your life.  There is not time to consider what type of treatment to have or to make arrangements for the other obligations in your life.  There isn't time to even prepare your family.  AML is so aggressive that everything is fast tracked.  I was diagnosed and admitted to the hospital on Saturday and chemo started on Monday.  

Because of these circumstances and the following isolation to protect from getting germs, I was unable to talk with the women I served with, I was just gone.  I was unable to return to any church activity, even attending our sacrament meeting for several months.  I was able to have the sacrament administered to me in the hospital and at home so I felt as if my relationship with Jesus Christ was still growing, but I missed attending my meetings on Sunday and I knew it was impossible for a while.  My activity within my congregation is a central part of my life and service to others.  To have this along with everything else I was involved with removed with no warning was difficult and the resulting isolation has been a challenge.  Thankfully I have had wonderful friends along the way who have recognized this challenge and helped me feel connected to a larger community.

Then, last Sunday, October 26, we decided to launch Operation Get Mom to Church.  My family saved the last row in the chapel and some friends sat in front of us so I would have a barrier around me to protect from germs.  My plan was to arrive during the opening hymn and leave during the closing hymn - again to protect from germs.  (If I could I would stay and give everyone a huge hug!)  So, I put on my dress and a scarf and drove over to church.  Emily was waiting for me to show me where they were sitting.  As I walked into the chapel with everyone singing I was overcome with a feeling of coming home.  The tears came without warning and with no stopping.  I knew I was in a room where people lived the gospel of Jesus Christ - they cared for and loved their neighbor as themselves.  They, along with all of you, had done this for me and my family.  I am so grateful to be a part of so many communities that are filled with people who are so amazing and selfless and who live as Christ would have them live.  God was able to give me a glimpse of heaven that day - to be surrounded by people who love you. Thank you for loving me and my family - heaven is complete when everyone I love is there.

REMISSION!!!!

Thank you for all of your prayers.  They have been answered and I am officially in remission!  I cannot tell you how thankful I am for all of your love and support.  The relief I felt when Dr. Ashe gave me the thumbs up was amazing.  I felt like screaming and crying and laughing all at once!  We were ready for some good news and are now ready to move ahead with transplant.  The timeline for transplant will be solidified by the end of the week but the current plan is to go back into the hospital on the 17th for a stay of 4-6 weeks.  I am grateful that I have the best possible donor in my brother and look forward to the next steps.  My job for the next few weeks is to get stronger and put on some of the weight I have lost.  Not many women my age get to eat whatever they want, whenever they want in an effort to put on weight!  I will enjoy the challenge!

Thank you again for all of your support!  I feel it every day, especially on the days that aren't that smooth. Thank you!!!

more prayers, please

After my blood draws today, LDS Bone Marrow called and let me know that all my "numbers" are great.  White blood cells along with neutrophils are up - YEAH!!!!!  This also means that on Monday afternoon I will have another bone marrow biopsy.  This will tell if the last round of chemo was able to put the cancer into remission.  The results won't be in for a few days after the biopsy but if I could ask for your prayers specifically for remission, I would be grateful.  Remission means that we get to take a little easier path for transplant.  Not in remission simply means a different more difficult path.  I know that prayers are heard and answered.  I also know that this is all in the Lord's hands. Thank you for all of your continued support and love for me and my family.  We feel it daily and are grateful for all of you. 

4th LP done

I went on Monday for my 4th and final spinal tap.  Results were negative!!!!  Spinal fluid is clear and my marrow is beginning to make blood again.  Hoping for a bone marrow biopsy next week so we can evaluate and make plans for transplant.  Thank you for all of your prayers.  Now we need clean bone marrow!

3 down and 1 to go

On the 13th I went in for my 3rd lumbar puncture (LP) to check for leukemia cells and to also inject chemo.  This one came back clean - no blasts!  The docs want me to have 4 clean LPs to show that the cancer in the spinal fluid is in remission.  The next LP is scheduled for Monday the 20th.

I have had a lot of people asking me how long I get to stay home and what the plan is from here.  I don't have all the answers since we just go from one biopsy to the next.  Here is the plan as far as we know it.  I get to stay home while my numbers recover as long as I don't get sick.  Any sign of a fever or chills or numerous other symptoms and I am back in the hospital.  Once my bone marrow begins to make blood again we will schedule another biopsy.  This should be within about 2 weeks but no one can predict it.  Once the results from the biopsy are in then we will form another plan of action.  We are praying for remission (no blasts in the marrow) so that I can move directly to transplant. If we have not achieved remission there are other options to get me to transplant but we are just taking one step at a time.

I am thoroughly enjoying being at home and just listening to our girls laugh, giggle and occasionally argue.  It is nice to be in my own bed or recliner and eating my own food.  I am grateful for all of your prayers that have gotten me to this point.  Prayers are being answered as evidenced in the strength of my body to endure the chemo.  Thank you.

Just to make sure you all don't think I am invincible, I do have moments where it is all overwhelming.  One of those moments happened this week where I was just mad that I didn't have my old life, I can't drive myself places, and everything I eat tastes like cardboard.  Thankfully these moments pass and I am grateful to my mom and to a nurse, Liz, who were there for me.  I wish I could schedule these moments at my convenience but they have their own schedule.  Liz just whispered to me that I was okay right where I was at.  That being angry is normal and that I am just in the middle of this fight.  My mom hugged me and wiped away my tears and just rubbed my arm.  I am grateful to have such amazing people in my life and to remember that it is okay to be mad!

While I am at home I do go to McKay Dee hospital each morning to have my blood drawn to check the numbers and to receive platelets or red blood cells if needed.  It is a small price to pay - an hour or two - in order to be at home.  Today we did see a small spike in my numbers indicating that my bone marrow may be producing a little bit.  Tomorrow we will see if that was a fluke or if it really is back.


Also, my dear friend Heather Carlson began a page for us at posthope.org if you would like to follow there.  Thanks Heather!!!!

Well, that was unexpected....

Wednesday, October 8 I was able to call Loren at work and ask for him to pick me up from the hospital!  I love making that phone call!  We thought I might be home before the weekend but the early release was unexpected and wonderful.  The doctors told us we were "responsible" so they felt good letting my go home.

Prayers are being answered as my body is strenghtened after each round of chemo and I am able to come home to recuperate.  My immune system is not quite as high as the last time I came home so my actions are limited - but so much better than being at the hospital!

Thank you for all of your prayers....know that they are constantly answered on my behalf.  Love to all of you!!!!!

A Quick Update

Wow! What a difference a few days can make!  Once the chemo is done and my body has a chance to recover I am no longer sleeping 20+ hours a day and I feel almost human.  I am officially in nader (nadering), have nader - my friends who know Latin will have to correct me.  Basically my bone marrow is not producing cells - YEAH!!!!  Sounds strange but we don't want it making cancer cells and in order to do that we have to stop all production - thank heavens for transfusions!  I am still weak and don't have a ton of energy but feel confident that we are now on the upswing!  Thank you for all you have done to help me and my family thru this tough patch!  Sending love out from east 8 (LDS Hospital)


Here is my shameless plug:

If you are able, please donate blood!  I am a frequent flier at the withdrawal counter of the blood bank!

Tears on my pillow

As I lay here in my hospital bed thinking of all the kind words, comments, cards, posts, and texts I can't hold back the tears.

Being here in the hospital is a very isolating time for me.  Everyone here on East 8 is restricted to a small part of the floor.  When I feel well enough to get out of bed I don't have very far I can walk.  This round of chemo I have spent most of my time in bed and not feeling up to having visitors very often.  The staff here is great and outside of family are the ones I talk with the most.  Being disconnected from my family, friends, and neighbors is difficult.

When times get really tough I will go back and look at Facebook posts or reread texts and feel those connections again.  They remind me that I and my family are part of a loving and supportive community.

It is difficult to describe how many ways people have reached out to me and my family with kind words and acts.  Some from people I don't even know.  Let me try to mention some without meaning to leave anyone out (but I know I will)

Wendi's Fight Club bracelets
dinners for my family
4000+ views of this blog
Comments on Facebook
Cards in the mail
Texts
Giving my kids rides to practice, school, games
Taking pictures of kids at games and activities
Books to read
Pictures for my wall
Snacks
Recording the Primary Program at church (naughty, naughty)
blankets
hats
visits
innumerable gifts
haircuts
laughter
memories of fun times
lawns mowed
prayers
raising leukemia awareness in the community
orange ribbons
http://posthope.org/wendi-and-family-journey-through-leukemia
and the list keeps growing

Even the smallest of these lift my spirits and give me added strength as I continue my fight against AML and fill me with an overwhelming feeling of gratitude and thanks to all of you.  #wendiwillwin

With love,

Wendi

Round 2

Even though Wendi was feeling pretty good when she was home, the fact that the day 35 biopsy had a small amount of leukemia meant she had to go back in the hospital for another round of chemo to kill the nasty disease.

In addition to looking for leukemia in her bone marrow the docs also check the central nervous system with what they like to call a Lumbar Puncture (LP) aka Spinal Tap.  Last Friday Wendi had an LP done.  One of the side effects of an LP is headaches for several days after the procedure. Over the weekend she managed them pretty well by lying down.  Being up and about for much time would bring on strong headaches for her.

Sunday the LDS Ogden Temple was rededicated and Wendi really wanted to attend so I went to the chapel early and snagged seats right by the door so she could slip in just as it started and slip out as it was ending.  Even though sitting that long gave her a very strong headache, Wendi really wanted to be there to enjoy the spirit of the event and remember the covenants we made in the SLC temple when we were married over 21 years ago.

After enjoying a nice 10 days at home watching soccer games, taking care of her family, attending the Ogden temple dedication and being more of a germophobe than either of us care to be, Wendi went back to LDS East 8 on Monday the 22nd to start Round 2.

Since her leukemia wasn't completely eradicated with the first round of chemo the medicines she will be given for Round 2 will be much more aggressive and more likely to have side effects.  Almost from the first hour of the chemo beginning Wendi has felt nauseous and that combined with the lingering headaches has made for a long week.  The medicines given to calm the nausea and headaches make her so tired she has been sleeping most of the day.

Round 2 started off with another bit of bad news.  The results of the LP showed a small amount of leukemia in the fluid.  The chemo medicines being used for this round will cross the blood-brain barrier to some degree but she will need additional LPs where they will take fluid and inject a dose of chemo directly in the spinal fluid.

Monday was a difficult day going back to the hospital but Wendi is strong and approached it with the attitude of overcoming.  The support and love sent her way by so many friends, family and loved ones helps her in her fight.  We wouldn't have made it this far as a family without the amazing outpouring of generosity from friends and family.  I don't have words to describe what we have received as a family and even if I tried I wouldn't do it justice.  We are very blessed and grateful for the kindness shown to us by so many people.  THANK YOU.

I have no doubt that #wendiwillwin.

Change of Plans

So I was so excited to write my last blog entry I didn't mention that part of the protocol is a bone marrow biopsy after day 35 of treatment.  (If you are counting that makes 3 biopsies in about 40 days- ouch!)  I went back in on Monday the 15th for that procedure and then returned on Wednesday the 17th for the results.  We had two options - no cancer cells in the marrow or cancer cells still in the marrow.  Unfortunately we ended up with the second option...there are a small amount of cancer cells still in the marrow but not in the blood.  This postpones my transplant date (the goal is no cancer cells before transplant).  It also means that my stay at home is shorter than anticipated.  I will be readmitted to the hospital on Monday the 22nd for another round of chemo - similar to the first but more aggressive.  We just need to clean up those few remaining cells.  My stay this time will be similar to the first stay but hopefully a little shorter.  Although disappointed that I don't get to stay home longer, we are grateful that there are tests and doctors who can determine the best course of treatment and we feel confident in them.

Leukemia is about a 2 year journey with many ups and downs and stays in the hospital.  We are at the beginning of the journey so please remember that being admitted back into the hospital is something that will occur repeatedly and is just part of the path.  I wish I could be home longer but have been able to do all the things that I wanted and know that I need to go back and fight again.

Thank you to Wendi's Fight Club for all of your support.  I am often overwhelmed by your kindness and love toward me and my family and I wish that there was a way to have the words "Thank you" convey the amount of gratitude, love and humility I feel toward all of you.  The fight continues.
#wendiwillwin

A few random pictures

Just to lighten the day....here are a few pics.

The first is our attempt at an awkward family photo - think we nailed it. (Callie is the photographer).

A few of the messages left on the board in the hallway at the hospital where people can leave messages.

The first artwork in my room.  Whenever I needed a happy place to go to I looked at these.  Thanks Brooke and Emily!

From my first mission companion.  Let me know if you figure out what it means!

should also say love, Emily

We do have some Chinese speakers in the family so I got a translation for this one!

All of us should be able to translate that one!

Here is another one of our Chinese speakers!  Loved seeing it there!

Once we knew the closet doors could be written on, they were filled up!

Say What??!!!!"

On the morning of Sept.11, the nurse came in to give me my numbers for the day.  She cringed as she told me that my neutrophils were still at 100.  I didn't think they had improved and was not in a good mood that morning as I was walking the halls.  As I walked, I thought about how I could convince the doctors to let me go home.  My extended time in the hospital was taking a toll on me and on my family.  In my mind, one of the hardest things was feeling so good and still not having my body respond in the way it should.  I thought about begging, pleading and bargaining my way out.  I was ready to offer to wear the mask and a clown suit if they would just let me go home.  

After the nurse (Becca) told me my numbers she could tell I was not happy.  Usually I would be chatty and positive about the next day but I was just ready to have myself a great big pity party!  I wanted to be by myself and cry and sulk.  I knew that later that day I would be fine but the pity party sounded like the way to go right then.

Fortunately, my mom and Debbi came that morning and saved my from my personal pity party.  They listened to me cry and rant and cry some more.  In the middle Debbi did one of the most selfless acts of love....she just grabbed my feet and started to rub them.  The simple release that came from that act was astounding.  Emotions just came out.  I don't know how she knew to do that but I was/am grateful for her simple acts of love in my life.

We decided to go for a walk outside and mentioned that to Becca (nurse).  She asked how long we were going to be and then suggested that we come back by about noon because we were going to want to talk with Dr. Mitchell.  All this was said with a conspiratorial grin on her face.  I wanted to hope but didn't dare so we just went for a walk.

Shortly after we came back, Dr. Mitchell came in to talk with us and told us that my neutrophils were still at 100.  Then she asked, "How would you feel about going home today?"

SAY WHAT!!!!!????

With absolutely no hesitation I said (or I might have yelled) YES!!  She cautioned us that I still had no immune system so I needed to be very careful and cautious.  She could have told me to wear a hazmat suit with a clown wig and I wouldn't have cared - I was going HOME!!!   I agreed to call if anything in my condition changed.  Then I called Loren and told him to buy a big duffel bag and come get me!  Mom and Debbi started packing up my room and took one big load of things home (you accumulate alot) and then Loren came and we filled out the rest of the paperwork and we walked out of the hospital!

What an amazing feeling to sit in a car, drive up the freeway and see something different out of the windows after 34 days on the 8th floor of LDS Hospital.  I am so grateful to live so close to a facility as amazing as the Bone Marrow/Leukemia center at the hospital.  They are literally saving my life.  
But it still was great to have the first part of the treatment complete!

We decided to surprise our girls.  Emily had a soccer game that afternoon and we were trying to get there before she had to warm up but that wasn't going to work out so I called her from the car and let her know that I would be at her game that day.  There was a mixture of tears and laughter - I don't think she knew quite what to do!  I did make it to her game in a big floppy hat and a mask and sat away from everyone but it was great to finally see her as part of the Bonneville High soccer team.  They have been incredibly supportive of her and of our family.

Thankfully we were driving the hybrid car so we could pull quietly into the driveway.  I got out, Loren got in position to film and I rang the doorbell.  Elizabeth answered the door and just stared at me for a while.  Her brain just wasn't ready to see me standing on the porch.  After a few seconds she just said, "Mom?" and gave me a big hug.  Then I had her go get Callie.  I stood to the side of the door so Callie couldn't see my clearly but she could see Loren filming her and was quite confused until it registered that her mom was standing on the porch.  Lots of hugs happened and I our happiness was immense.

So, I haven't written for awhile because I have been quietly enjoying my short time at home!

Thank you for your continued support!

Answer to prayer

Monday, September 8 2014

This past Sunday our ward and stake held a fast for all those ward and stake members who were in need of extra blessings.  I know that Loren bore his testimony yesterday about a priesthood blessing he was able to give me before I started chemo.  In that blessing he was impressed to tell me that the faith and prayers of others would sustain and bless me.  He also spoke about the power that comes from combined fasting and prayer.  What we did not know yesterday was that today we would find out that our prayers and the prayers of many others would be answered.  The nurse came in this morning and told me that my good white blood cells (neutrophils) that we have been waiting for have started to regenerate!  

When they reach the magic number of 500 (I have 100 now) I can go home for a few weeks before my bone marrow transplant.  Every morning the nurses draw blood to measure several things - neutrophils being one of them.  The number has been at zero for over a week while the other types of cells in my blood have been increasing.  So, when the nurse, whom I haven't had before, told me I had neutrophils I jumped up and down and let out a little yell! 

Thank you for your faith, fasting and prayers on behalf of me and my family.  They are heard and answered.

The Great Outdoors

Saturday, September 6 2014
Big news for this weekend was that I got to go outside!!!! The PA told me Saturday morning that I could go outside and see our dog.  I immediately began to cry. It was an unexpected blessing.  Normally we (AML) patients can't go outside without neutrophils being high. Mine weren't but my doctor understood that I needed a diversion from the routine. It was 4 weeks to the day that I was admitted to the hospital that I was able to walk outside.  As I went to leave the 8th floor, I thought,  "I'm not  even sure how to get out of the hospital. I have only come in, I haven't ever left!" I somehow found my way to the main door...  Stepping outside into the fresh air,  the sunshine,  the fresh smells was exhilarating!  Being able to be outside is a blessing!  We were able to sit in the shade together and even play with our dog.  I realized how the little things are such a blessing. An even greater blessing was being able to spend time with my family someplace other than the inside of a hospital.

A Temporary Separation

The judge has granted me a temporary separation from my IV pole aka Skinny Joe.  YAHOO!!!!! The sense of freedom is exhilarating! I honestly don't think I can use too many exclamation points to express how excited I am!  I have been attached to the IV pole non-stop since Sunday, August 10th and now I am free!!! I can actually turn in a circle without getting tangled. I can leave my room unaccompanied! I literally danced down the hallway this morning. I will have to see him again when it is time to replenish my artificial immune system but hours on my own will be cherished.

On a medical note. ...still no neutrophils but my body is making its own platelets and a few red blood cells. Please keep praying for neutrophils so I can go  home for a few weeks.  (Don't tell Skinny Joe,  but he has to stay at the hospital.)

Still waiting

Thurday, September 4


Just thought I would update that nothing has changed. I am still feeling good and am just waiting for my bone marrow to start producing blood on its own.  Right now the hardest part is feeling good but still being restricted because of the lack of an immune system.  
Not having an immune system is an interesting thing.  Usually when you are missing something so vital that without it you get very sick you would notice. 

 Not the immune system.  Nothing feels different, nothing looks different (except for the hair and that was the chemo), nothing smells different or sounds different but you get to sit in the hospital restricted to the 8th floor - east side only and if you leave your room - you are covered in what could almost pass for a hazmat suit.  

So the challenge becomes how to keep the little bit of sanity you actually came with.  Part of that process is to acknowledge that life is different and will continue to be for some time - not forever but for a long time.  There is loss that comes with that change.  I won't list the losses here but you can imagine what is lost when you spend 28 days on the east side of the 8th floor of the hospital.  A friend who has also battled cancer on this floor gave me some good advice.  He said that the trick is to acknowledge the losses but also the gains.  Seeing both for what they are is important and giving each the time and consideration they deserve.  The gains are more subtle but no less significant and are unique to each person and the  path they are walking.  
My gains have included....realizing how strong each of our daughters is and can be....increased love and devotion for Loren....a greater understanding of who the Holy Ghost is and His role in the Godhead...knowing what it feels like to have people praying specifically for you...humility

There are many more that I haven't listed and more to come.  I am grateful for the advice from John and for the time to put it into practice.

Debbi said I should call this one "The Bald Brethren"

How many girls get to take a picture with their dad and brother-in-law because they have the same haircut?!!!  Thanks Dad and Lance!

My hematologist does my hair - what is your excuse?

The new hairdo!

Emily was our photographer during the haircut!  Just got the pics..... Started off with the smiley face from Callie and then a lightning bolt from Loren and then the grand finale - the Hawk from Eliz and Emily.  Had a great time - glad we could make it fun - not many girls get to shave their mother's head!

Who would have guessed the Bryners are such rockers!!!!

Love this man with all my heart!

A plan of action and more waiting

My bone marrow biopsy came back perfect.  It was empty!!!  Now we need the opposite and need it to start making blood again.  As soon as I hit the point where I have 500 nutrifils in my blood sample then I get to go home!

We (Loren and I) had a family meeting with our doctors on Wednesday, August 27.  I must admit that these docs have incredible bedside manner and are very good at explaining medical issues and at the same time are very sensitive to our feelings.

In the meeting we were told that because of the specific chromosomal mutation which the bad white blood cells (blasts) have that bone marrow transplant is the best way to go.  This wasn't what we were hoping and praying for but after talking with the doctors we feel that this is the best way to go.  There is some good news.  20 minutes before our meeting they received the results from my sisters and brother being typed to see if they were a match.  My brother, Scott, is a perfect match!!!!  If we need to go down this transplant road, going down it with a sibling perfect match and with me feeling strong is the best possible scenario.  

So now we wait for my blood counts to come back up so I can go home.  I will be home for about 2 weeks and then I will come back for the transplant. Unfortunately, that stay will be about 5 weeks.  And then there will be a long recovery period at home.

I am grateful for talented doctors who understand many things about leukemia that I do not.

Later on Wednesday we had our girls meet with a doctor as well so that they could understand what was happening and what the next steps would be.  Not to brag, but I think Loren and I have the best kids in the world!  This is a tough thing to ask them to deal with and to process and they are doing amazing!  This does not mean that it isn't hard and there aren't any tears...all of that happens and it is okay.

We ended the night with the ultimate haircut!  It was time to shave my head. Hair was falling out at a rapidly increasing rate and as one of the doctors said, "it was time to pull off the band-aid"!  So out came the clippers and we let the girls decide if they wanted to do something crazy in my hair before it came all the way off.  They did have some crazy ideas and we did them all! Loren finished off the rest and now he is married to a crazy bald woman!  The next day a good friend gave me a t-shirt which I am wearing in the picture - it is perfect to go with my new style.  (I have always been jealous that guys' hair doesn't take as long to do).

And now we wait....

Chemo therapy began on Monday, August 11 and finished on Monday, August 18.  I knew that the chances were high that I would eventually lose my hair and look like my dad :)   So I decided to minimize the shock and get my hair cut.  Luckily I have a wonderful stylist, Weston Hardy, who made the trip down with his wife to cut my hair in my room.  I loved the cut and had a lot of compliments on it.  Unfortunately it will probably be short lived since my hair has started to fall out and will probably be shaved soon.  I have often said that I wished I could have a haircut like a guy and not spend so much time doing my hair in the morning.  Now that my wish is about to come true I am not so sure about it!  

Once chemotherapy finished the waiting game began.  My chemo continues to work in my body for about another week after it is done being administered.  At this point another bone marrow biopsy is done and the goal is to have empty bone marrow meaning that no blood is being produced by my body...remember those transfusions...they come in handy here.  After the biopsy then we have a meeting with the doctors and they let us know what path of treatment we will be following.  Our two choices are basically, more chemo or bone marrow transplant.  Right now we are praying for more chemo (there's a sentence I thought I would never say).  

Logistics and the number game

My chemotherapy looks basically like and IV except that one of them is in a clear bag and looks like water and the other one is in a syringe that is pushed through my IV and is red.  Medical terms: cytarabene and idarubison.

I am grateful for many things through this experience, one of which is anti-nausea medication.  Mine has worked perfectly and the only nausea I have experienced is when one of them was missed.  As soon as the medication was given, my stomach returned to "normal".  Normal being not really hungry but still able to eat.

So, each night for 3 nights the red (idarubison) was pushed through the IV and for 7 nights a new bag of cytarabene was hung that would last 24 hours.  I am also grateful to excellent nurses and aides who monitor me so closely.  My blood pressure has been taken so many times that I feel like my arm should be bruised.  We aren't talking just a couple of times per day....it was every few hours.  But I would rather have them know exactly what my body is doing than not so I didn't really mind the 12:30 and 3:30am wake up calls.

Once chemo started the numbers game began...every morning we would get a report of my new numbers (total white blood cells, infection fighting white blood cells, evil cancerous white blood cells, red blood cells and platelets).  All of these numbers would decrease - the point of chemo is to kill all the bad white blood cells aka blasts.  Unfortunately there is some collateral damage to the other cells.  There is a threshold for the platelets and the red blood cells (hematicrid) and when you cross that threshold you get transfusions.  It is not a matter of if you will get transfusions it is a matter of when and of how many.

Luckily my numbers began to drop right away and continued to do so until 14 days after the beginning of chemo I have no white blood cells - YEAH!!!!  This is absolutely the outcome we have been praying for and are so excited.  The down side is that I have no immune system.  Actually I do have an immune system; it is the anti-biotics, anti-viral, and anti-fungal that are constantly being pumped into me!  

Logistics....
When all this started happening my parents, who live about 10 minutes away had left to go on a LDS mission to Columbus Ohio.  As usual, they took a long road trip on their way to Ohio.  Before they even got to Ohio we got the news that I did have leukemia.  Mom and Dad turned around and came home after arranging for a delay in their mission.  I am so grateful to them.  Because they live so close it is easy for them to run Callie and Elizabeth around to wherever they need to be and to help do things that I didn't quite get done like grocery shopping and back to school shopping.  Logistics were no longer a problem.

Chemo begins

On Monday, August 11, 2014 my chemo began.  I had been asking all day long when we were going to start but the paper work from another lab had been delayed.  The doctors kept telling us that the paper work would be here no later than end of business so we just kept waiting.  About 5:30pm Dr. Motyckova came in and told us that the paper was here and we would be starting chemo just as soon as the chemicals were mixed by the pharmacist.  I thought I was ready but all of a sudden I wasn't.   A fear of the unknown took a hold of me.  

A few minutes before that a couple who had been assigned to be missionaries in the branch (congregation) that is the hospital had stopped by to visit.  As they were getting ready to go I asked if he would assist Loren in giving me another priesthood blessing. As Loren pronounced that blessing a feeling of comfort and peace came from God.  I was now ready for whatever chemo would bring.  

I am grateful that I know God lives and is aware of us.  Part of His plan for us is to let mortality and all of its ups and downs happen to us.  Another part of His plan is to give us the love and support we need when those down times happen.  He will not take away my cancer nor the experiences that come with it but He will give me strength, courage, optimism and peace.

What is Leukemia and what can i DO?

Here is an internet definition of AML (acute myeloid leukemia):

Acute myeloid leukemia (AML) is cancer that starts inside bone marrow, the soft tissue inside bones that helps form blood cells. The cancer grows from cells that would normally turn into white blood cells. Acute means the disease develops quickly.

Once I understood how quickly this cancer grows I understood the doctors concern to get me to the hospital as quickly as possible so they could begin treatment.  As Loren and I talked with the doctor, she told us that the initial treatment for all AML patients is the same - aggressive chemotherapy. Because of the need for immediate care and that the chemo would kill all my blood cells (this is what we want to happen!) I would be staying in the hospital for 4 weeks at the minimum.  I would be starting chemo as soon as all the paperwork was done and then we would go from there.  Our heads are spinning and I am sure over the next few days we asked the same questions over and over again - the doctors and nurses never complained, they just patiently explained again.

Now we had serious logistic questions.  Loren obviously was not going to work that next week but he would have to go back - can't take off an entire month.  Emily was turning 16  that week so she would be able to drive but she had just made the Bonneville High School soccer team and she would not be available at all the times we would need her.  What about back to school shopping, grocery shopping, getting kids around, not to mention cooking dinner once Loren was back at work.

In addition, I was told that with all leukemia patients if I wanted to leave my room I would have to wear a gown, mask and gloves and was limited to the east half of the 8th floor.  I wasn't leaving the hospital any time soon!

Here is a pic of what I look like when I am out of my room.

We would have to address the logistic questions later... for right now I was told I could control 3 things:  my attitude, my activity level and my nutrition.  Those of you who know me well know that if I am given something that I can do about my situation then I will do it.  These three things have become a focus for me and a piece of sanity to know that I do have control over a few things.

The Day After

Thank heavens for sleeping pills!!! There would have been no sleep for me Saturday night except for that!  Sunday morning began with more tests, at this point I had an ultrasound, MRI, CT Scan, and x-ray.  Sunday brought the insertion of a central line in my chest (think not so cool Ironman) and my introduction to my constant companion ever since.  Our girls have named him Skinny Joe, the Pirate, since he has a bunch of hooks!

Of course, we had to add the pirate hat since we believe you might as well have fun wherever you are at!

I am grateful for a central line that allows medications and chemo to be put into my body as well as blood drawn out.  I don't feel any of these things happening and I don't have to be stuck by any needles!  However, showering with a tube out of my chest is a new experience but why not learn new things!

Our niece was speaking in church on Sunday after her mission so Loren and the girls went to Sandy to hear her speak.  That was a tender mercy where they could attend church with family.  Loren left Emily, Callie and Elizabeth with Grandma and Grandpa at the luncheon to come to the hospital.  We had a meeting set up with the doctor to hear the final results of all the tests.  Dr. Motyckova (yes, I do know how to pronounce it) came in and told us that the tests came back.  The diagnosis was acute myeloid leukemia.  Another wave of disbelief and grief came over me and I was barely able to form a coherent thought. Dr. Motyckova waited patiently and compassionately for us to absorb the news.  Once the original wave of shock was done we were able to talk about exactly what those three words mean and what the next steps would be.  At this  point we both switched into "action" mode.  What can we "do" next?  And then, how quickly can we get this done. If fighting leukemia is what we have to do then let's get busy and do it so we can be done!  

The Diagnosis

I do remember now....we had my sister's lasagna for dinner.   The party slowly died down and Loren took the girls home...we thought we were going to talk with the doctor in the morning.  After everyone left, my friend, Natalie Turner stopped by and we visited for a minute. She hadn't been there very long when the doctor came in to talk with me. She proceeded to tell me that the tests had come back positive for leukemia but they would know in the morning what kind of leukemia I had.

Sometimes when bad news is delivered we describe it like being punched in the stomach.  I didn't feel the punch, I just felt like I had been living in a snow globe but didn't know it and suddenly someone decided to shake it up.  I was just bouncing around trying to make sense out of what happened and get my bearings and realizing that the world I had been in hours before was now different.  It appeared the same but a shift had occured unseen to the human eye but felt in my heart and would be felt in the hearts of my family.

Natalie and I just sat and cried and cried and would look at each other in disbelief as we said "leukemia???"  I was so grateful to not be alone when the news was delivered.  No greater love hath a friend than to sit with them at this time.  We were also told that we would not know the specific kind of leukemia until the morning.

Immediately after the doctor left I called Loren and told him the news. There is no way to accurately describe the feelings and emotions that we both felt as I told him that I had leukemia. We didn't fully understand what is was nor did we fully know how this was going to impact us and our family.  I did know that we could do anything together and that we had done difficult things together before but that this would probably be the hardest.

More birthday craziness

On August 9th Loren and I walked into LDS Hospital and took the elevator to the 8th floor.  We found the signs that directed us to the east end and as we walked we saw more signs that said things like "leukemia" and "bone marrow transplant".  The anxiety level continued to build.  We found the nurses station and sure enough they were ready for us.  We were immediately taken to room East 848 (at this point I really didn't comprehend that this was going to be my home for the next 4-6 weeks).  Shortly after arriving in the room two doctors came to speak with us.  (I was amazed that 2 doctors were here on a Saturday afternoon!)  Dr. Finn Petersen and Dr. Gabi Motyckova sat down and were very honest with us.  They discussed my high white blood cell count (28k on Thursday and 31k on Friday).  We were informed that normal counts are betweek 4k and 10k.  In addition, when they looked at the cells through the microscope, they were "concerning" but more tests had to be run.  At this point, Dr. Petersen did say that they suspected leukemia but more tests were needed.  I hung on to the "more tests were needed" words and thought for sure the tests would show everything to be okay.
At this point I simply wanted all the tests done yesterday!  So, they called in people and tests began.  Blood tests, bone marrow biopsy (not too bad when done at LDS hospital by Ali), MRI, CT scan and I think maybe an x-ray but that could have been the next day.  We were grateful that they were moving so quickly. At times, we had several people in our room and others just waiting to come in and do somemore tests.
After a few hours the craziness died down to a dull roar and we waited.
I am sure at some point that night Loren got us something to eat but I don't remember at all.  After dinner my sisters and their families along with my kids came down and we had a mini birthday party with cupcakes and donuts.  I love my family and their ability to have fun together regardless of location!

How we ended up at LDS Hospital on my birthday

This journey of ours began as any normal day on August 7th.  That morning I was excited because I had an appointment with an allergist to tell me what this strange rash was that was all over my body.  I had been fighting a rash since June (It definitely affected swimsuit season - didn't wear one) and 3 doctors told me as was allergic to something.  If I was allergic to something then I wanted to know what it was, thus my appointment that morning.  As the appointment with Dr. Sullivan continued nothing he tested for came back positive.  At this point he thought that maybe something else was at play and he ordered some blood work.  So I trooped downstairs at McKay Dee and had my blood drawn and walked out the door - I had a busy day and needed to get going!

Later that afternoon I was at the pharmacy and needed to pick up a prescription from Dr. Sullivan.  The pharmacy had no record of it so I called the doctor's office.  The receptionist said that Dr. Sullivan actually wanted to speak with me so she put me through to his phone.  He said that the pathologist has seen  something strange in my blood schmear and wanted more test.  The orders were at his office so I could just come in and pick them up.  Being the busy person that we all are... I asked if I could wait until Monday?  He agreed (he had no idea what the blood shcmear had shown.)   I hung up and thought "OK, one more thing to do before we leave town on Monday....put it on the to-do list."

Friday morning when I woke up my left leg was swollen.  I thought that was weird but thought I would just watch it.  We were up early and heading to Provo for the last day of an art and writing camp for Callie and her cousin, Camille.  I was taking Elizabeth and her best friend, Gabby with us so that we could all go to Seven Peaks Water park after the camp was done. As the morning wore on and we walked BYU campus my leg continued to swell and then I felt a warm spot on my calf.  Loren convinced me to drop the kids off at the water park and go to the instacare in Provo. (I was just going to wait until I got home and have it checked out.)  Instacare took one look and sent me next door to the ER.  I called Loren in tears....I had to go the ER, he was in Lehi at work, Emily was home in Ogden and I had 4 kids (2 of which were not mine) at a water park!  Thankfully Loren hopped in his car and came to my rescue.  The ER didn't find any evidence of a blood clot but they did want to draw more blood.  I asked that they not repeat any tests that had been ordered the previous day (trying to save money).  When the PA came back she said that my white blood cell count was really high (31,000) and the day before it had been 28,000. Normal zone is 4-10,000.  At this point, they weren't sure what to do with me so I stayed at the ER while Loren went to the water park to pick up the kids and take them to his parents' home for some pizza (it is dinner time)!  Meanwhile the ER can't decide if I am going to be released and follow up with a hematologist/oncologist on Monday or admit me to the hospital.  I couldn't help think that those were two vastly different options.

The decision was made to release me from the hospital and let me follow up on Monday.  Needless to say, I was thrilled with this decision... I could delay our trip to the cabin on Monday for a few hours while I finished up and I would have Saturday to get ready for company that was coming on Tuesday.  So we picked up the girls and headed home after an eventful Friday.

After my breakfast in bed on Saturday for my birthday, it was time to clean the house.  Loren went to run errands (buying my present which I still haven't seen) and the girls and I worked on cleaning.  After I was done I hopped in the shower and just as I got out the phone rang.  Caller ID said "LDS Hospital" and the thought went throught my mind "This can't be good."  I answered the phone and a man on the other end introduced himself as Dr. Finn Petersen.  He told me that the lab in Provo had sent up my blood samples to him and there was something seriously wrong with my blood.  I needed to pack a bag and come to LDS Hospital immediately to be admitted.  I asked how long I was to stay and he said anywhere from a few days to 6 weeks.  How do you pack for that??!!!!  I called Loren and he ordered the guy installing bluetooth in my car (my birthday present) to get out of the car NOW! and came home.  My sisters and brother-in-law came right over and after giving me a beautiful priesthood blessing and the promise that my girls would be with their cousins, Loren and I drove to the hospital with the orders to go to the 8th floor east nurses desk - they would be waiting for us.