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.

The Beginning

My amazing family and I have just started a journey that many others have gone on but now is ours to travel. We hope to do so with dignity, love, and humor and we hope to do it with an added portion of Heavenly Father's spirit. Ours is the journey of having a full-time mom diagnosed with acute myeloid leukemia and how we walk that road.