Thursday, May 14, 2015

Round 2 up and running

Monday May 11
I am sitting in a room on the 4th floor of Huntsman Cancer Hospital.  It's late at night on Monday May 11 and Julie was admitted due to a neutropenic fever.  The "drop everything and get to the hospital routine" has become somewhat normal.  It no longer shocks me.  I just start calling those who have been persistent at asking how they can help and turn the Mr. mom reigns over.  Julie started the second half of Chemo a week ago today.  She was able to come home just two days later on Wednesday.  It was an effort to make it not as toxic and they were able to take that course due to her blood work which I'll talk about in a minute.  As always, the first night home was pretty normal.  Then the crash came after.  The next day she was nauseous, and feeling crummy.  Her appetite was gone, and she felt so tired.  At one point late last week she texted me from our room that she felt guilty she was sleeping.  She remembered feeling that the first time around.  Even though logic tells her (and so do I) not to even worry about that, there is something defeating about being in your home and not being able to just get up and be a mother to your children.  She spent 2-1/2 days feeling this way.  I was able to go with her to her blood draw Friday.  Her levels looked good and she hadn't hit her lowest point in white blood cells (nadir).  Luckily over the weekend the nausea started to subside.  She was able to eat more than just crackers and tear into some of the great food our neighbors have been bringing us.  Several of her friends came over to be with her Friday evening and Saturday while I was at class.  She felt a little bad that she was just down for the count while they were there.  I assured her they don't mind.  One of them brought her favorite thing from Chipotle,  a quesadilla with corn salsa.  She devoured it.  It was the first time she was able to eat something substantial since Wednesday.  She mentioned to me that this friend and her family had fasted the week prior for Julie.  She found it interesting that she felt good when she was there.  "I think Cassie really understands the power of healing."  Julie often talks about how fortunate she is that so many are praying for her.  We are convinced this has helped carry her through these trials.  You really feel something.  It is a subtle but noticeable feeling.  That may sound like an oxymoron, but each time you are down, you find the strength to pick up and move on.

When writing this blog, I have tried to put things in a light of how they really are.  That said, I am naturally an optomist, and that inevitably comes out in my writing.  However, I think it is important to write down some of the dark moments.  The other night, after waking up to take care of Charles, I was not able to get back to sleep for a few hours.  This is very unlike me.  As soon as my head hits the pillow, I am typically out; even if I am woken up in the night.  I found myself in and out of sleep feeling annoyed at the world around me.  I was annoyed at everything, the news, pop culture, competitive nature of business, and school, Instasham...It was almost like I couldn't stop thinking about how all the things people care about in the world didn't really matter.  I was irritated that so many people, including myself cared about all these things.  I was overwhelmed by the sheer volume of demands on my life; with my wife, and children and keeping them healthy and happy, supporting them and giving them my love and time, educating our boys, teaching our baby to walk and talk,  running the business unit I am responsible for and being the best at it, doing well in school, taking care of the annoying tax audit on my hands and on and on.   Then it dawned on me; This is what depression feels like.  I had never felt this way in my life and it felt so irritating.  I couldn't just snap out of it like I normally would.  I decided to get on my knees.  I was not crying or overwhelmed emotionally, I was just spent.  I asked my Heavenly Father to just take the burden from me.  I knew I needed to sleep and that was stressing me out too.  I fell asleep shortly after.  Now I am not suggesting at all that this is all it takes to take care of depression.  I believe there are many out there who deal with this on a chronic level and wrestle with feelings like this sometimes on a daily basis.  Only, I now have a hint of understanding what others go through and for that I am grateful.  In the days since, those feelings have gone away.  Once I woke up I was recharged and knew that as soon as I started chipping away at the tasks at hand, I would be even more energized.  No one ever feels like starting a large task or set of tasks, but there is something fulfilling about working at it.  

Earlier today she went in for a blood draw and they determined she was neutropenic.  She had a slight fever and they told her that after she received some outpatient chemo that if she spiked a fever above 102 to come back up and be admitted.  So here we are.

Some of the better news from a few weeks ago was the results from her bronchoscopy culture.  It came back with no RSV, and no pseudomonas.   Pseudomonas is an underlying infection that she has in her sinuses due to the Cystic Fibrosis.  The other piece of really good news is her blood work (which is not the end all be all) came back clear for cancer just prior to the second half of chemo.  For all intents and purposes, she is responding very well to the cancer treatment.  Naturally her focus is on her lungs.  She is constantly asking questions about her inflammation and most recently symptoms of the lung infection coming back.  We will see how the culture comes back if that is confirmed or not.  Tonight she had a fever of 102 and her resting heart rate was 134.  Normal for her is about 60 bpm.

Wednesday May 13
I spent about a week away from home for work the last week of April, first week of May.  It was the first time I had traveled since late March.  With good reason, I have cancelled any travel that wasn't absolutely necessary.  I work for an incredible employer Fisher and Paykel Healthcare that has been with me every step of this process.  I couldn't ask for a more world class, family oriented company to work for.  It motivates me to be the best I can be for them.  I was able to come home for a night in the middle of the week on Wednesday April 29.  Julie was extremely nervous to go in and have her blood work done.  She didn't want to be sitting there alone if they told her the cancer was back.  She still wasn't fully recovered and they had her on antibiotics (Meropenim with Cipro) for about 2 weeks at the time.  The plan was to start Chemo that Friday since we were pushing 3 weeks later than they wanted to start because of the RSV and pneumonia she had gotten after the last round of chemo.  Friday I was to be at our national sales meeting.  She was sick about me not being there when she started chemo again.  I was hoping we could push it out till Monday so I could do both.  Ultimately I would have been there either way.  Julie is the most important person in my life, but keeping things together in the other aspects of my life is important.  My company would not have even questioned my not being there, I just felt I needed to from a work perspective.  It is a very valuable meeting each year.  So there I was on Thursday morning.  I had delayed my departure from 9:00 am Thursday to 3:30 pm so I could go to her clinic appt. with her oncologist.  As I mentioned earlier, the anticipation of the news of her blood work was all for naught.  Her LDH level was perfectly normal; 200.  We were both relieved.  She asked if we could wait a few days till Monday and they nervously said that would be fine.  She really wanted to get off oxygen, and secondarily she wanted me to be able to be there for the admit and not have to miss the meeting.

I know to the outside reader this may sound ridiculous, that I was even considering going to a work meeting, but it's part of what it takes for me to keep it all together.  Continuing normal life in other aspects of my life to the best that I can, allows me to bear the unthinkable stress this could cause a person.  I had an offer from my BYU MBA program to stop the program and start back up later.  For me, keeping as many things "normal" as I can, keeps me from completely breaking down.  It helps me be the best father and caregiver I can be for my family.  I tend to really perform when everything is on the line.  Truthfully, it is more evidence for me that there is a higher power.  No one should be able to bear this alone, and I am not.  I have sensed the prayers of others.  I have had so many tender mercies in my day to day life like the one above that lift the stress and allow me to put it on the Lord. We don't get relief from everything, but we get enough relief to take a breath and say, that is awesome.  Those test results brought us peace, relief, gratitude, and we said, "That is awesome!"

We had the help of my mom nearly every night that week and during some of the days.  She truly has been amazing.  She has said multiple times that it is important the boys have some consistency.  She told me before I left that she planned to be there each night, even when she worked.  That constant has been a blessing to everyone in my home.  We have had so many others selflessly offer and help with our boys, bring food each night, sleeping over last minute, going with Julie to an appt, and generally just lifting the burdens for us.  Nothing is better than the random text from people you haven't spoken to for a very long time or from people you speak to each week.  People can't take the burden away, but reaching out certainly makes it more bearable.  Don't be afraid to ask how the person you know is doing.  It means a lot.  Be prepared to hear Debbie downer on the other end too.  Anyone you know going through chemo will tell you, its a very dark path.  Julie has told me on more than one occasion that it is the hardest thing she has ever gone through.  I think the most difficult part is that the victories are short.  You are knocked down with some complication, or more chemo every time you get up.  It is a test of mental perseverance as much as physical.

After that appt. on Thursday April 30,  they decided to drop her prednisone dose from 40 to 20 to see if they could wean her off.  She was almost off oxygen sleeping on just 1 lpm.  The very next day, she tightened up.  She needed 2-3 liters of oxygen.  She started to wonder and worry about lung rejection because her symptoms matched it.  She text me, "Low grade fever, fatigue, weight loss, feeling depressed, shortness of breath, cough, and oxygen dependence."  I text her back, "You need to focus on what you know.  You had a gnarly infection both bacterial and viral.  You were suppressed when you got it.  Trust your hope and not your apprehension."  She called Transplant that day and they bumped it back up to 30mg.  It seemed to do the trick.  Dropping that fast from 40 was probably a little too aggressive.

While on my trip, I assured Julie I would be there for her admit on Monday.  Being admitted is typically an all day ordeal so I knew it would be a long one for me.  Sunday night during our final dinner party, I slipped out and took a cab to the Santa Fe airport to rent a car.  I had rented a car on Thursday and returned it at the request of one of my co-workers who organized the meeting.  I was told I could rent right from the hotel on Sunday; not the case.  It was not only inconvenient, but it was probably a little more money than if I had just kept the rental for the weekend.  I was pretty irritated.  Monday morning I woke up at 3:45 to make the hour long drive from Santa Fe to Albuquerque to fly out at 6:00 am.  I had the thought that Julie would never forgive herself if I got in a wreck and died.  She told me later that I would never forgive myself had I missed the admit and she died...touché.  I made it home without a problem.  Julie was running the house, back in mom mode.  We were tying up loose ends right after I got home 8:00 am and were off to the hospital just before 9:00.  Again, a good friend took our kids for the day.

We officially started the second round that day.  It was the 4th of 6 chemo inpatient stays.  I spent all day and that night at Huntsman Cancer Hospital with her.  Her Oncologist told us there was not as much risk for tumor lysis (tumors breaking up and putting stress on her kidneys) since her levels were so low and running the chemo in half the time would make it less toxic.  Her hospital stay was very smooth and the spinal tap chemo she received was really successful.  As always, the first night back is fine, then the effects kick in.  She was in her room much of the day Thursday as I worked from home.  She told me she was feeling guilty for sleeping again like she did the first time around.  I told her to "Soak it up.  We are all pulling for you and putting you in a position to do so.  We want you to sleep so you can feel and recover."  Ironically, my mom was at my home that Wednesday when she came home and she had a feeling to have the boys checked for strep.  They had impetigo on their faces.  Sure enough, the day Julie was coming home, they were diagnosed with Strep throat.  Luckily we had it diagnosed early and they weren't showing many symptoms.  We had no choice but to quarantine them to each of their Grandma's houses for two days.  So much for pulling them out of school.

For the next few days, my text vine with Julie was filled with requests from her and no answer or one word answers from me.  She would ask me to get her certain medication, shhh, Fan, wash your hands,  or can you fill my water please.   Monday night this week we were talking about how chemo completely takes everything out of you.  She was a different person the week before.  She was responsive, talking with the boys, and generally recovering.  She was going on walks several times a day.  When she was asking me for assistance, she was so patient as I filled my other responsibilities and attended to her after at times.  There are times when the stress comes to a head for me.  I am very fortunate that Julie has an ability to quickly forgive.  It motivates me to be a better person and bridle my passion.

Yesterday after being admitted on Monday, Infectious diseases came up and told her the results of her tests from Monday.  The RSV is back and they suspect the fungus had grown.  This is not surprising since she had a dose of outpatient Chemo on Monday before she was readmitted for the previously mentioned fever.  She called me yesterday pretty freaked out.  She said "If I keep going like this, this chemo is going to kill me....I just feel like a guinea pig.  They have no data on how to treat me."  Infectious diseases told her she is "definitely a unique case, and we are going to get our heads together to get you better.  You are really sick and I am sure you can feel it."  She was apprehensive about starting the second round last Monday May 4th before completely recovering  from her lung infection.  She said she felt like even though she went forward with it, she felt like she had no choice.  Late last night they told her she would be having a bronchoscopy today.  Luckily we were able to have her pulmonologist do the procedure.  Julie mentioned her apprehension in continuing on with chemo.  She looked at her and said, "Are you serious?  Girl I'm going to smack the sh*% out of you!  That would make the first round of chemo pointless.  Listen, there are too many times you have tried to die and you're not very good at it."  Julie said, "So you aren't surprised this happened?"  "Not really."  the Dr. said.  "What if they want to start me on the next portion?" said Julie.  "They don't pay me to analyze, they just pay me to get data.  You need to just get through this."  "So you're not worried about my lungs?"  she asked.  "No."  Having the confidence (not arrogance) of her doctor was just what she needed to hear.  Julie looked good tonight.  She finally hit her nadir and started receiving blood today as well as platelets.  Her bronchoscopy was very clear and it looks like it is just inflammation in the small airways.  There was no mucus that came up from the lavage of saline in her lungs.  Our hope is that it doesn't get worse as her white blood cell count comes up.  Last time, the inflammatory response was delayed until the WBC came up and this caused a lot of inflammation leading to more oxygen dependence.

Sunday, April 26, 2015

RSV is Brutal

RSV is brutal.  I can only imagine what our little ones go through from watching an adult go through it.  All I can say is, wash your hands before you pick a baby up....and spare that baby the misery of what might be a little cold for you.  The scary thing about RSV in small infants is, they can become so exhausted from labored breathing that they will just stop.  I have watched that exhaustion for over 2 weeks.  Julie was admitted for a week in order to receive an antiviral treatment for the virus.  She was treated with Ribavirin in a tent that fit over her bed.  We coined the name of the treatment "bubble boy Robocop."  It really wore on her since she had to sit in this tent for 2-½ hours 3x/day.  No one could be in the room with her since the drug was so potent.  She would coordinate visits from me around these treatments.

Wednesday night April 8, I needed to get up there and re-access her port which sits under her bicep instead of on her chest cavity.  It had been 7 days since it was changed.  It is a difficult access and she has had one too many experiences of people missing the port and prodding multiple times to access it.  Capable people are there to do it, she is just done taking her chances.  All afternoon the nurse was asking her when I could come up that night.  It was an especially busy day.  I was working from home with the boys playing downstairs.  Our nanny that day had to cancel.  I had already gone up for a visit during lunch and left the kids with a neighbor.  Around 7:00 I was still working like mad.  The nurse kept asking, so the texts kept coming.  For whatever reason, after calling 7-8 people I found a friend to come chill at the house after the kids went to bed.  I was on a mission to take care of the port.  Typically to access, you have to do it between treatments.  Among other things, Julie was on fluids and some antibiotics that were timed.  For all the hassling she received throughout the day, I was surprised to find, that when I arrived the lidocaine cream had not been ordered.  It was necessary to numb the site before I re-accessed her.  It had to be ordered up from pharmacy.  We waited for about 20 minutes.  Frustrated I walked out to see if the order had been signed by a physician in the system.  I confronted the CNA who requested the order, to see why it hadn't been ordered earlier in the day when it was known it was needed.  Instead of listening to my frustration, she told me "I'm not a nurse, you will have to talk to your nurse."  True as it may be, this just inflamed the situation.  The "its not my job" attitude is something that has always has rubbed me the wrong way.  To add insult to injury, she was standing up and walking away to avoid the confrontation.  I am an intense guy, but I'm not mean.  I just wanted some dialogue.  If you can't communicate with your patients and their families about issues in your hospital,  you should probably think about a different career.  Most of the time, when we are frustrated or upset with the hospital or staff,  there is a solid reason for the problem.  Even if it exposes the holes that naturally occur in any large organization, communication will most always temper a frustrated patient or family.  Ironically, that night is when I updated this blog last.  Mentally it was a marathon day.  There have been many of those lately.

That week, Julie's oxygen dependence was as high as 8 lpm and by Thursday it had made it's way down to 4.  For all intents and purposes,  things were on the mend.  She was going to be discharged on home oxygen, something we haven't had here since pre transplant in March of 2011.  It was not a big deal since she appeared to be improving.  She came home that Friday April 10.  We very quickly got into a routine.  I would come in her room and pound on her back giving her CPT (Chest PhysioTherapy)  when she did Albuterol and Hypertonic Saline nebulized treatments 3-4 times a day.  This helps break up any chest congestion that may be in her lungs.  Her lungs function as healthy lungs, but she is so immune suppressed and knocked down from the chemo, that it takes longer to heal than normal.  The weekend was long for Julie.  She was finding it harder and harder to breathe each day.  She had the concentrator turned all the way up at night.  The first night we even used some E tanks to give her better oxygen saturation.  Sunday she decided to go to church for the first hour.  Several people were floored to see her there.  I think she wanted to have something normal happen for a day.  One friend came up and said "What's goin' on?" Julie replied "Just breathing."  We all laughed, only realizing how much truth there was to her statement.  No drama, just telling us like it is.  It took everything to get there and get home, just for one hour.  Monday came and she was still on oxygen.  We had the home care company bring out a concentrator that would put out a higher flow.  By then, her dependence was up to 6-8 lpm.

When she returned to clinic on Tuesday April 14, she was running a marathon.  In fact, since that Saturday she had a heart rate of about 110 and several low grade fevers.  She was very labored in breathing.  Her emotions were close to the surface as she focussed on just breathing.  She was relieved to some degree that they were going to admit her.  The lack of improvement and the negative direction things were going were really giving her anxiety about the danger to her graft (lung transplant).  Long term inflammation can lead to rejection.  We had asked for the typical anti inflammatory regimen of steroids after she left the week prior.  They gave her a small dose of prednisone that didn't seem to affect the inflammation.  They admitted her to the UofU so her pulmonary doctors could follow her.  She was asking for the typical 1g of Solumedrol (steroid) to really knock the inflammation out.  The reservation Huntsman had was the immune suppression steroids give that could be a breeding ground for the Lymphoma if it was still in her body.  It is truly a benefit risk analysis each week.  We have tradeoffs each way.  Give steroids, and allow lymphoma to grow aggressively.  Don't give steroids and keep the lungs inflamed leading to further infection and inflammation, risking rejection.  The pulmonary docs decided to start with some broad spectrum antibiotics since that was the simplest approach with the lowest risk.  The RSV had appeared to have in part led to a bacterial infection.  Two days later this was confirmed with the culture.  I spent that first night with her.  She asked to have bi-pap to help her sleep and heal.  She knew if she was able to sleep deeper, her body would heal faster.  That night we saw her heart rate come down to the low 90's.  It appeared the antibiotics were helping and she was healing to some degree.  The next day her heart rate was under 90 and she was only requiring 4 liters.  She took 3 walks that day.  She always tries to be up if she at all can bear it.  All she felt like doing was resting, but she mustered up the strength to get up and walk to get the air moving.  The discipline of a cystic kid turned adult; They learn through experience the power of perseverance.

I had a neighbor come to the house again that Wednesday after my kids were in bed so I could go see her.  She was visiting with my Sister-in-law when I got there.  She seemed to be in much better spirits, less defeated and more up beat about the days accomplishments.  We were told they were moving to another room in the Pulmonary unit.  This was over where all the CF patients were, where we used to stay years ago.  After waiting for a few hours, the normal snail communication of orders and necessary sign-offs came through and we were able to move.  They took us to a closet they called a room ;).  We have been spoiled by the newer facilities up at Huntsman.  When I arrived home, I found Charles sitting on the kitchen floor.  My neighbor friend Joe, was at the kitchen sink washing vomit from a myriad of clothing and bedding.  I was in shock at what must have happened.  I had sent him a text that I would be another hour and he had said. "Don't worry about me..."  Little did I know that he had just cleaned up enough food to feed his entire family, only it had come out of my 6 year old Ben.  Now some of you may be on the verge of vomiting as you read and imagine the scene, but as a Dad, I have to say I was actually a little proud.  That kid had eaten like a horse that day.  I was sad to hear he had a yard sale of vomit on his bed and a little mortified my neighbor was stuck cleaning it up.  Come to find out, Joe had sent me that text and just after, Charlie the 15 mo old did the same thing in his crib.  There was already wash in the washer, and he was hand washing the rest so it would be ready for the next load.  It honestly couldn't have happened to a better dad out there.  He handled it just like I would,  took care of my boys, and got them back to bed.  After all, as he said, "Its not the first time I've cleaned vomit."  He's a champion.  As he was leaving, I heard the wailing from the downstairs.  He almost looked as if he wanted to get right back in the battle.  I relieved him and sent him home.  Sure enough, we had another yard sale on the new bedding.  Keep in mind, his twin...sleeping through the whole thing.  Jack allowed me to stand him up on the side of the bed while I quickly changed the sheets and got him back in.  I am laughing as I am writing this cause it just couldn't get any worse right?  Well Debbie Downer is here to stay so sit back and get some popcorn.  It gets better.  I spent the next hour consoling, cleaning,  and washing various articles in the home.  I managed to put a red comforter in with a white sheet...yeah it's pink now.  All the while Ben was in the shower...for the second time in an hour.  After getting out, he had one last solid hurl, this time in the toilet.  I decided to put him to bed on the couch.  I gave him a scum bucket (that's just what we call a bowl to hurl in during the night) and some saltines and told him to call for me if he needed me.  He had a few more dry heaves but was done after that...so I thought.  I don't recall when Jack had it, but it was the week prior when Julie was still admitted.  That is the true silver lining in all this.  Julie avoided the vomit and was at the hospital both times my kids hurled.

That Friday I was able to get out and have some fresh powder on the snowmobile. The boys were at school, Alta had just over 3 ft of powder and it was supposedly a big Central UT storm.  I had only 2 hours to ride in the morning but it really did something for me.  It was only about 8 inches where we went, but it was great to get out.  I felt I could face all the vomit and problems the world could throw at me.   So here it is...I came home to find a letter from the IRS auditing my tax return for 2012.   Initially, I had an oh crap moment.  After it settled in, it just became another deadline.  After all,  it is bound to happen to everyone at least once in your life, so why not have it happen when you are all but numb to any shock and stress.  I started to laugh at the irony.  It could be far more stressful were it to happen this time last year, when there wasn't a care in the world.   When I received this text from Julie after watching her run a preverbal marathon for days on end, the audit became background noise: "I'm not really feeling short of breath like I was before."  Every stress dissipates when the one you love is improving in this long fight.  She came home the next day.

Last weekend was still touch and go.  Every time it looks like she is improving, it ends up being nominal at best.  I spent my morning doing wash and disinfecting the nobs and bathrooms.  She had me wash the duvet cover even though it had been cleaned the day before.  I couldn't argue, she just spent two unplanned weeks in a row at the hospital.  The whip was out and it was crackin'.  Clearly she must feel better if I am now an indentured servant again right?  Well, that night after insisting Ben eat his dinner, he hurled at the counter.  This bug was hanging on.  Julie couldn't stay far enough away from the kitchen.  She still had a low grade fever so luckily she was in her room anyway.  After cleaning it up and going through the normal evening routine, we retired.  Only a few hours later I woke up with a lull in my stomach.  At first I wrote it off to heartburn.  It took me out of bed and into a soaker tub in our basement.  I couldn't get comfortable.  I ended up just praying to have it taken away, knowing full well that as soon as I hurled I would feel better.  The empathy this was teaching me for my children and more importantly for Julie was palpable.  I hate this feeling.  You just want to die if you are to go on feeling this way indefinitely.  Luckily, it only lasted about another hour and then the deed was done.  I quickly fell asleep after that.

So there we were.  Julie was home, at least 2 of us were sick and the other 2 were showing signs that the vomit was only the beginning.  We isolated ourselves that next day and I thought I would have a good time watching an old Chris Farley movie Black sheep with the boys.  It was pretty much me laughing and turning around to stone cold 6 year old faces.  We didn't make it all the way through.  Julie was feeling lonely and still a little feverish.  The O2 had climbed back to 6-8 and she was getting very discouraged.  We decided to take a little walk at  Canyon rim park.  Seeing the boys play and be at the park was really nice for Julie.  Watching Charles face as he goes down a slide is a sight to see.  He can't get enough of it.  The secret with Julie when she is feeling down, is just be with her.  It is so therapeutic for her to be out and with the family.  We went to her parents to celebrate her mother's birthday.  It was nice to be with everyone and have Julie really feel of their love.  At the end of that night she asked for a priesthood blessing.  In the LDS church, any worthy male over the age of 18 can give these blessings by the laying on of hands.  I have been doing it on and off since that time in my life.  I gave her a blessing that will go down as one of the most unique blessings I have given.  As I started, I had the distinct impression to bless her to be healed from this ailment.  I resisted saying it because I wrote it off to my own will.  It kept coming back and I felt impressed to say it.  The blessing really brought comfort to me and Julie in the sense that it explained the purpose of the problem she is experiencing.  As she drew upon her Savior for assistance and help, He would take this yoke or burden from her.  Throughout last week, I frequently found her on her knees, even when she was exhausted.  Sometimes Julie will just throw her hands over to mine when we kneel down for prayers at night, so seeing her on her knees so frequently was moving for me.

Julie had another fever break as she frequently has that Sunday night to Monday April 20.  In the morning, she sent me this text: "I can't really concentrate on anything other than breathing."  She was crying.  She was scared, anxious, tired, defeated, and discouraged.  Again, each time she was feeling a little better, she felt worse later.  She received a very nice card from my Grandma Mona Layton that day that seemed to turn her day around completely.  Right now, her appreciation level is so high and so deep.  That day was a rough one for all of us.  I was still not feeling well, trying to work.  The boys were being 6, not obeying like they normally do, and Charles was officially sick with an ear infection after I had taken him to the doctor.  Julie only felt frustrated since she couldn't physically come out and help and it was too risky.  She had her oxygen up to 8 lpm at times when we would walk.  When we were on one of these short walks to the corner and back, I asked her, "Do you believe in the healing power of the priesthood?"  Of course I knew her answer would be yes, but I think the two of us were beginning to wonder what was it about that blessing on Sunday that wasn't adding up.  She knew she had to do her part and work and pray in order for the blessing to come to pass, hence the frequent times on her knees.  Wednesday we had a clinic visit with Julie's Transplant team and Dr. Cahill.  Chest x-rays had become worse than at discharge the week before, she was on about a week of antibiotics and she was still fevering and short of breath.  Dr. Cahill wanted to bronch her to see what else they could find.  She considered taking a boipsy from the lungs, but ultimately wanted to just see, and take samples of congestion in the lung.  During an bronchoscopy, the lung is calmed with a nebulized litocane treatment.  This prevents the patient from excessively coughing.  They also give her the Michael Jackson drug to partially sedate her.  She is awake as a camera goes down the throat into the lungs.  They inject saline solution into one side of the lung and suck it back out.  With the saline, comes sputum cultures from deep inside the lungs.  This is where the inflammation is. Possibly it's an independent infection from what is colonized in the larger airways.  This is what we are currently treating with antibiotics.  Julie's lungs looked very clear.  Low inflammation in the airways with very little "gunk".  However, because of that, the Dr. suspected inflammation in the smaller airways. There were a few samples of sputum that came up so we will know in a few days if they have something different growing.  That night Cahill put her on a larger dose of Prednisone.  She is still currently on it and it has made a marketable difference.  Tonight at my parents she was on ½ a liter while sitting on the couch.  She is asleep on 2-½ lpm as I type this and that may be overkill.  Clearly a large contributor to this has been inflammation.  We partly wish we were on it sooner but the course we took slowly helped and was the lowest risk course of action.

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Julie still gets sad she can't hold her baby or get close to her boys.  "The Jarle" has turned completely into a daddy's boy.  He crawls to me like a little puppy ready to go for a ride.  Today while I was at school she opted to not call my mom when he woke up from his nap and just had him here scurrying on the floor.  She told me he was next to her chair on the floor when suddenly he saw on the table across the room, a pink beanie.  He scampered across the floor as fast as he could move to reach as high as he could reach to pull it off.  He scampered back and reached up and handed it to her.  He is the best.  He takes all the stress away from all of us.  He has been the light that has stamped out so many dark moments. He keeps all of us laughing and doting on him.  He adores his older brothers and they literally will entertain him for hours.  They are my babysitter more often than not.  The boys have really risen to the occasion and adapted to just help out.  They have made it possible for me to continue my professional life and school life at night.  They have taken the little moments in the evening I can give them and not complained.  We have had some ugly moments of stress and frustration at our house and they continue to roll with the punches (not literally).  They have taught me to love first.  Even at times when they are not eating the generously given food from our neighbors and friends and I bark at them to eat, they forgive me quickly.  I am constantly thinking about the mercy they give me as a father and how fleeting it will be in the future.  I am learning complete patience from these little men I call sons.  My love for them has never been deeper.

I stand here alone at times despite my knowledge of the Savior.  I watch as my wife suffers and I cannot take it from her.  I can only imagine the pain of our Father in Heaven as He watched His Son Jesus Christ suffer.  It is agonizing at times to not be able to intervene and take it away.  Julie at times has to bear it, as do we, as individuals in this family.  People can lighten the load, burden, and take some of the stress that is added to our lives.  But ultimately we, and she must go through this.  Julie frequently reflects on the patients out there bearing this without support.  It moves her to tears to think of the dark moments they must feel bearing this without others close to them.  As I said earlier this year in a post, it is at these moments when your back is against the wall, that you really find out what you believe in.  For some it is when they discover what they believe in.  It is not a hope, or a figment of an imagination, but it becomes knowledge.  You have no choice but to pray to that God you were taught would listen.  You find yourself relying on the scriptures you have read and the subtle thoughts that are brought upon your mind.  It is these small moments that you see the small miracles of a higher power.  It is not therapeutic only, but it is necessary for our happiness.  When we are brought to our knees in desperate times, we seem to pull out of those times.  We all do.  Is that by chance?  I believe it is a fruit of our divine nature.  I believe it is a fruit of a divine Father in Heaven.  I cannot take pain away from my children, but I always try to comfort them, and teach them.  He is doing the exact same thing.


Wednesday, April 8, 2015

Hump Day

Well hump day came and went and wasn't cause for much celebration.  The morning after the last post about a month ago, Julie woke up with a migraine that was so bad she felt nauseous.  She started to vomit and it continued through that Wednesday.  She wasn't able to take any of her meds.  I can honestly say, I don't remember seeing her so sick that she couldn't take meds.  She finally got a few down with some additional anti-nausea meds prescribed late in the day.  The next morning she seemed to wake up with some improvement, but ultimately it was a repeat of the previous day.  Just 2 days after she came home, she was re-admitted.  She was so bad she couldn't take her meds.  At first we both just thought it was from the chemo alone.  While that certainly could have been a contributing factor, we later learned it was most likely caused by a spinal leak from an intrathecal (similar to a spinal tap) procedure gone bad a few days prior.  Julie has to have chemo delivered to her spinal fluid because Lymphoma likes to go everywhere; after all its a cancer of the blood.  Luckily she only has to have it about 2x per hospital stay/drug regimen since there isn't cancer in the brain or spinal fluid.  If it were in her spinal fluid or brain she would have twice as many of these intrathecal procedures, aka Finkle and Einhorn according to Julie.  The procedure didn't go as planned since the room with the camera and equipment to get the needle in the right place on the spine was not available.  She had a well experienced physician poke and prod about 3x drawing back blood instead of spinal fluid till Julie had to pull the plug on him.  He asked if he could come an hour and she said to come back the next day.  I was out of town in DC at the time so she had to go it alone....she often does just by the nature of being in the hospital.  Luckily, the doc was very gracious the next day and apologetic.  He lined up the Fellow who had done it successfully the first time to have another go at it.  We were grateful he didn't let his pride get in the way; a true marker of the wisdom that experience brings a physician.  I was hearing about this all over text while at my work meeting.  Julie told her oncologist that the anesthesiologist that did this needed to retire;  "I'm sure he was a great doc in his day, but he's just old."  During a hospital stay later in the month he totally redeemed himself, and flawlessly did a procedure, this time with the camera.


I have only seen Julie suffer like that one other time since I have known her.  It was a few days after the lung transplant in 2011.  They had to keep the air moving in her lungs and she had to keep her new lungs clear of mucus that was partly from the surgical procedure and partly from laying down for over 24 hours.  They would have her nebulize an irritant called hypertonic saline to cause her to cough.  You can only imagine after being opened up across her chest, the pain of coughing was excruciating.  I remember her crying through that process as she bore it head on.  She knew she had to do it, so there was no question.  This experience was similar for me since she was not only nauseous, but the pain in her head was most likely caused by a spinal leak.  The fluid around her brain had leaked out of the perforation from a few days prior into the tissue.  When the fluid drains they can typically do a blood patch.  That wasn't an option since her platelets were so low and she was on a blood thinner at the time.  She had to just let it pass.  Once they admitted her, they were able to give her Ofirmev (IV acetaminophen) which was very effective at easing the head ache pain and some hardcore anti nausea to curb the inclination to vomit.
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That hospital stay lasted for 3 days and she was home on Sunday the 8th.  We were able to enjoy being with her for the first part of that week.  I had to fly out of town again Monday so during the time I was home, I was caring for her here and at the hospital.  The next stay was the M in CODOX M IVAC, her drug regimen.  This is the one that brings the mouth sores.  She went in on Friday the 13th not knowing they were admitting her for the next part of Round 1.  Julie sent me a text that afternoon that pretty much sums up how she has handled being away from her kids: "When do you plan on coming up?  Do you think Charles needs you more than me?..."  She is always putting her children first.  Even in the midst of the most suffering.  I made it up there that evening.  She was getting fed up with the strands of hair coming out.  She had kept it in a bun since Wednesday and started to take the bun out.  That bun was her last chance at glory.  It was hanging on and as she took it out the hair came out in chunks.  She had gotten her head around losing her hair since she had a few weeks to think about it.  Once it was constantly on her pillow, she was fed up.  I told her I would shave her and she could shave me.  "Are you serious?"  "Of course I am.  How can I expect you to go through that part alone."  We shaved and I couldn't believe how cute she looked.  Once she brought her head up from me shaving her, all I saw was her face.  Her head is tiny like the rest of her...or her hair was just thick.  I call her beetlejuice sometimes.  We asked a girl working to film it for us so I could share it with the boys later.

I slept over that Friday night and was pleased to meet our nurse the next day.  He was a friend to one of my buddy's in the neighborhood and I recognized his voice.  We had only met touring on skis in January with a few people at night.  It was nice to have someone familiar take care of my wife.  That morning I ate something that just completely took me down.  I was nauseous and vomiting.  I had to leave as soon as I was sick.  I spent the afternoon doubled over.  My mom came and took my kids while I laid in my bed.  Every noise in the house was amplified.  I remember just yelling from my bed "SHUT...IT!"  My poor kids just took it from the other room.  I laid there miserable and feeling guilty but relieved...I was able to fall asleep after she took them to her house.  Finally after about 6-7 hours of discomfort, I started to feel better.  It gave me some perspective of what Julie has been going through, though my bout was short lived.  Julie took care of me over text giving me pointers of what to eat and how to minimize the damage.  Glad I can have some empathy now in at least one field of suffering.  The boys came back home and we spent the evening watching old batman cartoons on YouTube for their "story."  They were in heaven.

It was during this stay that I believe the psychological weight of the suffering Julie was undergoing, started to take it's toll.  She was trying so hard to think about the blessings she had been given instead of the hard times that were present.  She was starting to really miss just holding her boys without reservation of getting sick.  She was very emotional that Saturday night talking to me about the boys and how grateful she was to be a mom to them.  I assured her that what they are experiencing right now is a spiritual insurance policy preparing them for their life ahead.  They see her courage, faith, and perseverance and they will never forget that.  She told me that bringing them to earth was "what I knew I had to do to give them life." At the end of the night of back and forth about everything she was so grateful for, she sent me these texts:  "I cannot turn off the water works.  I'll just pray.  Do you think it's the Chemo?"  I said, "You have taken on a lot.  Crying is ok sometimes."  Julie replied, "Maybe it's all coming out at once.  I hope I'm done after tonight bc crying just makes you puffy and not get enough sleep.  It does make you feel a lot though.  I love to feel."

The following Wednesday the 18th Julie was starting to get mouth sores from her Methotrexate.  "My mouth sores hurt so bad I can't even swallow my water.  I have them in my mouth and my throat.  Feels like a sore throat."  Just one week prior, she was saying how so far Chemo wasn't too bad and that other than the bout with Finkle and Einhorn (Spinal Tap) she was feeling confident.  Her stay this time was 6 days and she came home Thursday the 19th.  Luckily as miserable as it was to take her pills with apple sauce, her mouth began to heal that Saturday.

Sunday night the 23rd she began to feel fatigued.  It took so much to do so little.  She was feeling stressed since I was leaving the next day to go to Irvine for work.  I had my mom come over to help her Monday night and she was able to drop the boys at a neighbors while she went to the hospital to have her blood taken earlier that day.  They told her they were going to admit her the next day for the final regimen of the first round, IVAC.  She had to organize the schedule for the kids and it was somewhat overwhelming.  Luckily we have had an incredible neighborhood, friends, and family step up every time we need the help.  I have coordinated this up to that point for my travel, regular work stuff at home, and school every other weekend.  The outpouring of support really overwhelmed Julie when she saw it first hand.  After I came home I was able to visit her on Thursday the 12th.  I remember her just crying from the support from everyone.  She couldn't believe it.  On the surface you might read this and say to yourself, 'of course people will help.  You should believe it. '  People come out of the woodwork to offer, but this has been a long process, and actually calling people up and asking them comes with some apprehension.  We know people have many things to do, and as willing as people are, it adds stress to their lives.  Having a chronic illness, you have to bear that fact your whole life.  The last thing you want is to put someone out,...again.  When they are so willing and so available, I think the gratitude we feel is just overwhelming to us.  The apprehension of asking is washed away....so thank you very much.

As with the first two regimens of round 1, the actual chemo wasn't too bad.  Although having scheduled everything, this hospital stay she worried like any mother would.  She texted me about homework, Charles medicine, the laundry, people being late for the next person to take over; everything that she wanted to have control over, but had to give up.  She was calling every person that was coming to help and walking them through everything.  If I learned anything the first few hospital stays, it's that most if not everything goes just fine, with little collateral damage.  She started to feel emotional towards the middle of this stay again and they decided to put her on an anti depressant.  She took it for a few days but quickly came off.  She would feel drowsy, and it would relax her, but she would still have anxiety about the same issues and couldn't sleep.  We know it takes a few weeks of these meds to have their best effect.  However, it was irritating enough that she said she'd rather feel, then not.  She has been better ever since.

That Friday I decided to take my kids on a bike ride across the Bonneville shoreline trail to visit their mother at the hospital.  We left after dinner and it was a warm night.  We had to haul up a hill with their bikes and the jogger.  It took some encouragement, but once we were at elevation, they were loving it.  They kept talking about how we were taller than all the buildings.  They rode their little hearts out.  At one point riding up a hill I told them we may need to go back since it was getting late.  They started to pedal harder; they wanted to surprise mom.  We finally made the 3 mile ride there around 7:15.  Julie was surprised and elated.  It was really fun to do.  But I had to go back...and it was getting dark.  I had thoughts of riding through research park back to Hogle Zoo where we started, but remembered how there are few sidewalks on those streets.  I figured it would be better to go it in the dark on the trail.  The boys started to whine at about bedtime 8:00.  We still had 2 miles to go back.  They would push and then stop and say, "I wish I was in my bed."  I asked them if they saw any kids on the trail that night.  "No."  That gave them some pride and they pushed on.  Ultimately the melt down arrived.  We were getting close to emigration and it was dark.  I knew we would be just fine, but they were now cold, tired and ticked.  Some might say this was an epic parent fail...as one bystander called it, I say it's a man maker.  The next day they just talked about how fun the trail was and how they were the only kids up there.  (I recognize there's probably a reason for that.)  They did say they wanted a billion layers to wear next time we went though.


When Julie came home last Sunday, we were all so excited.  We had our mom back, including me.  She immediately started to nest and get what I thought was an orderly house, in order.  She was touch and go throughout the week with nausea, since the effects tend to be delayed a few days after treatment.  We took her in Monday for fluids, she was dehydrated; Wednesday for 2 units of blood, she had low hemoglobin, hematocrit and she was neutropenic (low white blood cells).  We sat and did a puzzle Wednesday night at home and talked about everything she was going through.  This last regimen really took it out of her.  She was defeated.  "I really thought I would be tougher"  she said to me.  I asked her if it was harder than transplant or CF maintenance.  She replied with tears in her eyes, "This is the hardest thing I have ever done."  I think we are so used to seeing quick results.  With CF, you produce results early in your hospital stay, with the transplant, you see improvement everyday post op.  With this, as soon as you have improved, you are ready for the next piece of the treatment puzzle.    We just keep looking to summer.

On Friday she went in for platelets and they admitted her.  She had no clotting ability, used all her white cells, and was fevering.  She was becoming so weak that she seldom answered my texts.  She was hoping to come home for Easter since she spent Thursday afternoon planning and shopping for the boys baskets.  Over the weekend, she got worse before she got better.  They gave her blood, multiple times, platelets to help her clot, but the white blood cells have to be made on their own.  They took a culture when she was admitted, and on Sunday we found out she has RSV.  The respiratory virus that typically affects children, also affects highly immune suppressed patients such as chemo patients.  They have to nebulize a treatment over 2.5 hours in a clear tent that makes her look like bubble boy.  The drug is called Ribavirin.  We call the treatment Bubble Boy Robocop.   When I saw her Sunday she was a little better, but still limited on what she would say to me.  She didn't have the energy to be irritated with little nuances at the hospital.  She was on 1 liter of oxygen.  That said, after having fevers that were not very treatable for 3 days, getting the news of RSV was a piece of relief.  We knew what was causing the problem.  She now had to go through Bubble Boy Robocop 3 times a day to help her body recover.

Monday night I went to see her and her breathing was even more labored.  She was now all the way up to 6 liters of oxygen.  I haven't seen her breathe like that since pre transplant.  She didn't have much energy to talk, but it was just nice to be with her.  She had started to make her own white blood cells.  Today her WBC was even higher.  With that, comes inflammation caused by the virus.  This is likely what is causing her labored breathing.  She went through the weekend worrying about rejecting her lungs and wondering why she was fevering.  Her pulmonologist assured her this was not the issue.  Her blood work didn't show it and her chest x-rays confirmed it wasn't rejection.  Now you can see why the news that it was RSV was so welcome.

Since most of my conversations these days feel like a wet blanket, here is the silver lining:

  • Julie is improving each day and it appears we have rounded the corner on this challenge.
  • Julie did Round 1 in half the time they told us it would take.
  • Her oncologist says that despite her current state, she is taking this very aggressive regimen very well compared to other patients.
    • The complications from the immune suppression of the chemo is routine.
  • Julie is still making hilarious comments: "What do you think is in your nurses fanny pack Julie?"  "Four sets of balls"
  • Huntsman staff is taking incredible care of her.
  • We are half way done with treatments.

Tuesday, March 3, 2015

Home

On Saturday I was able to see Julie for a few hours.  We had a great time together.  True to form she told me a funny story that had us both laughing.  Friday morning she had finally fallen asleep after a hard night of feeling so bloated it was like being pregnant.  It was around shift change that she had fallen into a deep sleep.  She said, "You know how it takes a bit for me to warm up to new people (like nurses each day)?  Well this nurse came in with guns a blazing saying 'How ya doin?!  Where do you live? How many kids do you..."Shhhhhh"  she said.  'Oh!  Sorry!'  He continued to talk, but softer (sounds like my kinda guy),  and she later just softly said "Stop Talking."  When I saw her on Saturday, it was clear her blunt replies broke down the social barriers since they had a good rapport.  We were laughing about it since she has done the same thing to me on multiple occasions, just not in such a friendly tone.  Julie has been doing very well and her physicians have told her she has been responding very well to the treatment.  Most people on this very strong regimen CODOX M IVAC have a lot of symptoms.  Aside from bloating she has had only slight nausea, and her heart and kidneys are functioning very normally.  On the last post I mentioned her LDH numbers were climbing.  They topped out at 10000 on Saturday night.  Julie was starting to get worried because they didn't know if it was from the tumors breaking up or the cancer growing.  She prayed the numbers would drop.  That was at the beginning of the fast so many of you joined us in.  The next morning it was down to 8000, a significant drop in such a short time.  Tonight she said "I know that I am doing well because of the prayers and fasting.   There is no other explanation."

I had to travel to Washington DC for work for two days.  We managed to have a number of people graciously here to take care of the boys.  I spent some time on the phone trying to stay updated with Julie and her counts.  Each day she has been improving.  When I got home tonight I walked in and said Hi to her friend Heidi who was watching the boys.  I didn't even notice my wife sitting on the couch.  When I saw her I was sure she snuck out.  It happened many times when she was a CF patient.  She was discharged today and will be back Thursday for another out-patient treatment.  There are two more treatments on day 15 and 17 she will have to do and then Round 2 around day 30.  I couldn't stop smiling when I was here.  It was just so unexpected to have her back.  Apparently I wasn't the only one.  Charles couldn't stop smiling either.  He just kept his eyes on his mommy.  Many thanks to the thoughts and prayers that have been on her behalf.  We know so many of you out there are dealing with your own problems and barely have time to look at this or even think about what we are dealing with.  It is a real blessing to have so much support available and given to us.

Saturday, February 28, 2015

Chemo

Just one week later after that last post, Julie and I went to Huntsman Cancer hospital for a check up with Martha Glenn.  She is the physician who sits on a national board that writes protocols for different types of lymphoma's.  Julie didn't want to bother with the appointment, but knew it was necessary.  She was primarily concerned with packing the bags for Hawaii just two days later.  We arrived to the appointment in a flurry due to the fiasco of getting the boys up a half hour late, taking a community shower with their baby brother, cooking their eggs and toast, and getting them off to school.  My dad came over to be with the rugrat.  There was a stat blood draw due at 8:45 am.  One of the panels they draw is her anti rejection medication level called "tacro" short for tacromilus which is generic for Prograf.  This level has to be taken at the trough, or when you normally take the medication so it is consistent, and measurable.  Last we had it taken it was 22, which was very high.  We suspected it was from the lung infection she was trying to fight and the cold little Charles gave to her shortly after we returned from the hospital a few weeks ago.  We were anxious to see it lower since she dropped her medication level at the advise of the UofU transplant clinic.  Being slightly late Julie asked if the order was there for the Prograf and asked how soon she could have the 8:45 blood draw.  The secretary looked at her with a big smile and said, "Ok, I will let them know!...Next?"  Julie came out and let me know about the exchange.  We both rolled our eyes, but also were a little on edge since the accuracy of this level is so critical to properly managing her anti rejection medication both for her graft, and in part to prevent further lymphoma growth.  Julie was uneasy.  As each minute passed that only increased.  I encouraged her to go back in and follow up.  She did and was again given the "don't call me, I'll call you" treatment.  A few more minutes passed by and Julie nudged me to put down the paper I was reading and go see what was going on.  By now it was just before 9:00.  I walked in and asked two phlebotomists standing there talking about Facebook or some crap if there was anything holding up Julie's blood work.   She said "we're just getting it ready."  I firmly told them, if we knew it was going to be this delayed we would have just gone to the lab down the hill at the U.  Flustered, shortly thereafter they called her back.  The phlebotomist asked Julie what time she arrived.  "8:40-8:45, I don't know."  She cut her off and said "8:48."  Julie started to explain the crazy morning and the lecture came back, "If you need to have a draw at a specific time you need to be here 15 min bef....THEN LET'S DRAW IT,"  Julie firmly replied.  That shut her up.  Correct as she may have been, it only adds misery to the fact that a 34 year old woman is in a cancer clinic when someone feels they need to "teach the patient" what they need to do.  It baffles me where individual pride inhibits patient care.  Patients for the most part are doing their best, even if their best is absolutely terrible, it is their best nonetheless.  This was a quibble over 3 minutes that really wasn't necessary.  Some might say we brought it on ourselves, maybe that is so, but we still needed the draw and didn't care if there was some confrontation involved to get it.

A little while later we were interrupted from doing our puzzle in the waiting room to be called back to see the doctor.  Dr. Glenn came in and checked Julie on the table.  She asked some questions about how she was feeling.  Julie casually mentioned she had been a little tired that weekend, but also let her know she felt fine doing Zumba the Saturday before.  Jules thought it was from the depo shot they had given her a few weeks before when they anticipated chemo.  In the back of her mind she didn't want to accept that it might be one of those changes the fellow Dr. Patel had mentioned at our last meeting.  If it was, we were there just in time, 48 hours or so after she started noticing it.  Dr. Glenn printed out Julie's blood work and handed it to her.  She talked a little about her prograf level; it was down to 6 thankfully.  They like to keep it in the range of 7-12 so just a little low.  Creatinine level measuring kidney function was high at 2.17; the higher it is, the lower the function.  Her Uric acid was very high at 14 (normal is less than 5) and then the doozy; LDH was a whopping 2780.  Normal is 200.  LDH is a marker for cell damage because when old cells breakdown, they release a protein.  The more rapid the proliferation of cancer, the more this protein can be found in the blood.  That number immediately jumped out to Julie when she was handed the paper, she said later "I knew it was high."  Dr. Glenn brought it up and told us what it should have been this far after the surgery.  It was 380 at our last visit but they attributed that to her surgery.  She said that, along with the high Uric acid made her very nervous.  I asked if we should do a scan to confirm her nervousness.  At this point I was just drawing straws to find more reasons to go home and pack for Hawaii.  She really gently tip toed around what she was going to say to her.  Julie asked how that LDH level compared to other aggressive lymphomas she had seen, and she replied, "It's one of the highest."  Julie just asked her, "So do you want me to come in today or tomorrow?"  Tears were welling up at this point.  Dr. Glenn was a little taken back by her candor.  She preferred that day but knew that getting the contrast drink mixed up and fitting her into the radiology schedule would take a modern miracle.  She decided that if we came in first thing Wednesday, they could do a scan and then admit her and start treatment.  "Guess we aren't going to Hawaii" Julie said with a somber chuckle.  Hawaii will always be there.  Towards the end of the appointment, Dr. Glenn said to Julie, "I can't believe how you are handling this."  She too had welled up a little.  I got the feeling during that appointment that she wasn't going to leave that room until we were ready to leave.  She spent a lot of her time with us and I will be forever grateful to her for that.  It was just what Julie needed as her patient to feel comfortable with her as her physician.

That night we told the boys what was going on and that we weren't going on our trip right now.  They didn't seem to be affected by the trip but were asking about their mom.  We told them she was going into the hospital for a while and Ben cut us off "to loose her hair?"  We all laughed.  I told them I would be shaving my head with her when she looses it.  They don't want any part of that.  Jack said, "You're going to look like Grandpa Art!"  We are glad they are young and resilient.  While we slept that night, Julie woke often feeling pressure in her bowels.  We arrived the next day for a 10:00 am PET scan and I worked while I waited for her.  At around noon she came out.  We went upstairs to admit her and sat in a room for about 2 hours.  We were later moved up to the ICU so they could keep a close eye on her when she received treatment that afternoon.  They told us they were moving her so we got her things and walked up there.  They weren't used to seeing a patient walking around in normal clothes in that area of the hospital.  The kidneys were not doing well since the creatinine had climbed to 2.34 and the Uric acid was still very high.  The LDH levels had climbed to 3350 in just one day.  This cancer was growing fast.  We saw Dr. Glenn's partner Dr. Stevens at around 5:00 on Wednesday.  She showed us the results of the PET scan and they were chilling.  Julie had small tumors all throughout her digestive tract.  There were a few other areas where the small tumors showed up too.  She told us we should start chemo within the next hour or so.  7:00 came and went.  All the while, people would come in and go over her extensive med list to try and correct it in the computers.  Knowing how it typically takes 2-4 hours to get admitted to a hospital, Julie brought her own meds so she could keep on schedule.  We anticipated having chemo in the afternoon since Dr. Glenn wanted to start as soon as possible after the scan.  She mentioned it should happen sometime during the day.  For that reason we stopped the prograf and Imuran, the anti rejection drugs since they can interfere with the chemo and the chemo fills the need to reduce the immune system.  From the beginning at about 1:00 pm, we were emphasizing the need to have her long acting insulin for that evening.  Last hospital stay, it took all 3 days for them to get that right and she had high blood sugars the entire stay.  After a long day of asking and receiving "okay I will call the doctor"  we finally received chemo at about 11:30 pm...almost.  They didn't have a consent form signed.  The oncologist during the day assumed it was signed in clinic, and the clinic assumed it would get signed the next day since we weren't admitted on the same day as the appt.  They called the fellow on call, and he told them he was home and wasn't coming back.  I was livid.  We spent the day waiting, 11 hours to be exact, to start this urgent therapy that was supposed to start shortly after our scan.  The urgency of our physician the day before didn't trickle down into the unit.  I told them I was ready to go to the fellow's house and rip him out of bed.  The other misnomer was we were off transplant meds, but not on chemo, so the immune system was getting less suppressed by the hour, putting her lungs at risk of rejection.  It may not have made a difference, but the apprehension this created was not ideal either.  I called our neighbor who is also a fellow at the hospital and he talked me down.  He mentioned that waiting another 6 hours wouldn't hurt and that it would give the kidneys time to continue to increase in function.  They had improved that evening with a dose of Rasburicase.  Julie nicknamed it "Raspberry days."  We woke a few times at night with apprehension about her rejection meds not being in her.  We have been so vigilant for 4 years that this felt totally irresponsible.  By early the next morning we received her long acting insulin.

The next day, Thursday, we were consented around 7:30 am.  It took another 3 hours to start the chemo, still a ridiculous amount of time since the meds were in the room the night before and ready to go.  I also spent the day waiting for her spinal tap version of Chemo since she wanted me by her side.  On the way back at 3:00 pm  I found out that it was done in the ER and I couldn't be there. The back story to all this, was our doctor was livid as well.  She is soft spoken, but apparently carries a lot of weight and when she is not happy, she will get what she wants for her patients.  There were multiple reports written up about the discontinuity.  So sad it had to be Julie that had to deal with it, but so grateful she just took it in stride.  The care since then has been excellent.  Her transplant doc called Julie and they spoke about the insulin.  She said "Tell them you manage your diabetes very tightly."  It feels like they are managing her care from more of a multifaceted approach now as they had planned to from the beginning.  Thanks to everyone at the UofU and Huntsman Cancer for taking good care of my sweet wife.  You have helped her beat the odds so many times.  The care given to her should never be forgotten since it is the means by which we believe we have been blessed.  We are looking forward to this summer when we can put this behind us as another bump in the road.

She felt more and more bloating that night, and after chemo has started the LDH levels continue to skyrocket.  This is an indicator that the tumors in her bowels are being broken apart.  Luckily her kidney function has stayed normal so they have been able to take this extra work.  Each day she has said she feels more and more bloated.  Today she said she feels pregnant.  She didn't sleep very well last night, but all in all is in good spirits.  She was able to meet us out front yesterday and see her kiddos.  That lifted her a lot.  She is such a champ.  Never complaining.  She told me she wanted me to stay home last night and today to be with the boys and give them some consistency.  She is always thinking of the other person.

Looking back at our decision a few weeks ago to forgo chemo was something we immediately did with the physician on Tuesday.  She confirmed it was the right move since Julie had a lung infection at the time.  That was one of the first things she asked Julie about (knowing she wanted us to do chemo) and was happy to hear it was all but gone.  We felt right about it and it proved to be the right move, for the time.  We were able to spend 3 weeks in more normal life; hoping for the cancer to be gone, but recognizing it may come back we just lived as if the former were the case.  We were able to go on several dates, and take a quick trip to Zion National Park and the sand dunes with the boys.  I will forever be grateful for these memories in such a tumoltuous time.  We are also grateful that this happened before our trip.  To see how aggressive this cancer has been just over the course of a few days has been chilling.  I am so glad we weren't out of town as its aggressive growth occurred.  My hope in posting is the reader will see what Julie is facing with such high spirits and say to themselves,  "I can face...."  The truth is, you can face anything if you place hope first and doubt second.  For Julie I would be remised if I didn't credit her faith is Jesus Christ, since she attributes her strength to putting Him first in all of this.  She sees things so clearly, even the mundane.  When you are faced with death your whole life, during these times of facing it, you tend to not get caught up in the minutia of who said what and who's doing that.  During these times it is so easy to realize what matters most in life is your relationship with God and how you treat and have treated others.  How others live and what others do becomes less and less important to you.  The important stuff becomes, how am I treating others, is it the way I should be treating them, as a loving Savior would want me to treat them.  The things that normally get us worked up and upset become as futile as they actually are.  I am humbled at this opportunity to learn from such a wise soul in Julie.

If you have never fasted, or seldom do, or frequently do, this Sunday is a great opportunity to witness it's real power.  Fast with us for Julie.  People always ask, what can I do to help.  This is what you can do.  It has a real and tangible power that hopefully you have witnessed carry us through these posts.  It doesn't matter if you don't know anything about fasting.  Just start with a prayer or meditation about Julie and her well being.  Spend tomorrow morning and afternoon without food or water (unless you need medication of course) and see what it does to you.  You will feel a love for those around you that you have never felt.  If nothing more it is a gesture of sacrifice as a petition to God that we are willing to do without.  No need to tell others you are fasting as this just cheapens the experience.  Thanks again for your thoughts and prayers.  They make a difference!

Thursday, February 19, 2015

Carried

The journey we have been on in the last three weeks seems somewhat distant.  With the grappling with doubt and then hope I felt the week of the surgery, that grappling only continued the following week.  We met with Huntsman Cancer about 2 weeks ago and they told us Julie's tumor was a rare lymphoma called Plasmablastic lymphoma.  It is a very aggressive cancer so they prepared us for a heavy dose of 4 rounds of chemotherapy.  This lymphoma is primarily found in immune suppressed HIV patients, but on rare occasions it has been found in Post transplant patients.  Julie was #38 since 1997 and #5 who has a lung transplant.  Our oncologist was very forthright that even with the data on HIV patients, there was no empirical evidence on how to best treat this cancer.  To her credit, she sits on a national board that writes the protocol on how to treat different types of Lymphomas.  We were in good hands.  It was still very rare.  That said, the fellow shared with us a story of how a patient with this disorder was clear one week and full of tumors just a week later.  We were going off of case (individual) studies.  That was Tuesday.  We spent that day grappling with the new lifestyle we would have to undergo.  Julie would be admitted for 2-4 weeks with a break of a few days in between and as with most chemo, just when she would start to feel normal again they would hit her with another round.  Julie was going to have to move in with her parents so we could protect her in these highly vulnerable times.  The oncologists biggest concern with starting chemo was Julies risk for infection.  She already had an underlying infection in her sinuses from her CF that had moved into her lungs and it could become systematic.  They were going to start that Friday but decided to push it off till the following Tuesday, Feb. 10.  It took a bit, but we came to terms with this reality, and started to plan out how we were going to carry this out at home while she underwent treatment.

On the way home we had a lot of discussion about how much suffering is going on around us all the time and how we are simply oblivious to it.  We find ourselves pushing through our normal routine to provide for our children and serving others at arms length.  Julie also said this experience has helped her remember how important it is to stay on our knees, even when times are good.  We have had an immense amount of gratitude for the last four years.  Though there have been continual bumps in the road, and suffering at times, it really has been pretty normal.  We have spent a lot of time together both here and out of town.  We have really lived to try and care for Julie, and look ahead expecting the best outcomes.  For me, this meeting at Huntsman was the first time in our marriage I began to slip from that long term viewpoint.  We spent the prior weekend feeling peace that all will be okay, and each set of information that came in was not what we hoped for.  Discouraging isn't the best word to describe it since that implies some level of naivety of the realities of what we were facing.  It was more a feeling of, "ok, so now what do we do?"

That night I spoke with the twins at length about what was going on.  They are 6 so they have a thicker candy shell than older kids and adults do.  I don't know they can fully process what is happening, but we don't want to make the mistake of dumbing it down to protect them.  Julie mentioned die and one of them asked "die?"  We were pretty upfront about the possibility but reassured them that we had hope and faith that wouldn't be the case right now.  We talked a lot about their uncle James, as we have their whole lives.  They took it for what was worth and just listened.  Ironically, when we visited her in the ER, Jack asked on the way in "what if it was just us boys?"  They know what is going on, and have always known. We have really focussed on sharing with them the times Julie has felt James very close to her.  Like when they were born, when Charles was born, before the transplant, and again last month with this latest debacle.  Ben and Jack have an affinity for their uncle.  They have always listened intently when we talk about him.  I spent about 45 minutes at their bedside talking about life here on earth and also after death.  I told them that no matter what, we will always be with them.  Though the belief that we will be with our families after this life epitomizes the word faith, one can't discredit this belief based on our dire situation.  When your back is against the wall, and you have no where to go, just hoping something is true for your benefit, does not and will not carry you.  You begin to feel it and it becomes ingrained in your soul by small hints and impressions that are so gently given to you.  We drew the conclusion that although James is not here physically, he has never left us.  He has done little things to let Julie know he is there.  These little things have been shared with the boys their whole lives.

James really forged the way for Julie when they were kids.  As a child, she was terrified of the hospital.  Only 17 months apart, these two were like cystic twins.  He filled the role of what a big brother would be in every essence of the word.  He always suffered more, having been born with a congenital heart defect on top of his CF.  When they were adolescents, they would stay in the hospital together, though James would also have to fare it alone.  Nurses would reminisce about the two of them just laughing in their room together.  Julie has tried to emulate his courage and positive attitude ever since he passed away in January of 2007, just 3 weeks before our wedding.  She took the torch and has charged ahead.

The next morning we were up early to have the PET scan.  I spent those early hours catching up on homework before the work day started.  We received a call from the fellow later that afternoon.  To his surprise, there was no sign of cancer on the scan.  He still wanted to start chemo treatment the following Tuesday just to be sure it would not come back.  The few cases that were available showed fairly good outcomes, with this regimen.  However as I was sinking myself on pubmed, the outlook was grim for those HIV patients.  I had read one meta-analysis that showed mean survival for no treatment was 3 months and treatment resulted in 15 months.  That few days, I struggled with thoughts of 'this was it' and then 'this isn't how its supposed to play out.'  Through that afternoon, Julie was really wrestling with this course.  She said, "If I go into chemo on a clear scan and get infected and possibly die, I am going to be pissed!"  We decided to call the doctor back.  This was a heavy decision, with no clear path ahead.  If we don't do treatment we run the risk of the cancer coming back with a vengeance and knocking her down making it harder to survive the chemo later;  If we do the chemo, we run the risk of her underlying infection becoming systemic and causing harm or death.  We tried first to get hold of the attending oncologist Martha Glenn, who met with us the day before; she was on vacation till the next Wed.  We then tried to call Julie's transplant pulmonologist Barb Cahill to no avail.  The fellow who we spoke with had told us the day before that even with a clear scan, he wanted to move forward with chemo since he had seen its aggressive nature once before.  Julie sort of 'knew' how he would react to her questioning.  We ended up talking to him.  She said, "I just want to make sure we are making the right decision here.  With my CF, diabetes, lung transplant all being considered, is this the best course of action?  I don't want you to think I don't want to do this because I don't want to lose my hair or miss my Hawaii trip.  I just want to make sure its the best thing for my survival.  I have this sinus and lung infection that has not seemed to go away and I just don't want that, with the chemo to be the thing that takes me down.  I have a family, you know."  We were surprised at his candor.  "Honestly, I have grappled with the same thing" he said.  We were so grateful he was honest.  He admitted it made him nervous, but acknowledged that the patient he saw do so poorly without treatment, was not immune suppressed, or a transplant patient.  But that didn't make the decision any easier, in fact it made it a little tougher.  That night we had a close friend over who had undergone chemotherapy and was faced with a similar tough decision.  Operate and remove lymph nodes then undergo therapy or just undergo therapy.  He gave us some sound advise.  Make a decision, then take it to the Lord.  Move forward with a course and if we need to change course later, then so be it.  His wife reminded us of all the miracles and odds Julie has surpassed in the past.  It was one of those tender mercies of the Lord to have them there that night.  It helped clarify what we were to do.  The next morning, Julie connected with her pulmonologist.  She tended to agree, that without cancer on the scan, she leaned toward not taking the risk of chemo, though she admitted her expertise was not in oncology but in CF and lung transplants.  This was the second witness for Julie, the first being our conversation with the fellow the day before, and the reminder of Julie's purpose to be here by our close friends.  For me, I was still haunted by the poor outcomes of the studies I had been looking at.  This whole time, we were praying for a miracle.  With other situations like this in our past, the miracle was in front of us and obvious.  This time, it was a little more obscure.  We had to wrestle with it and really just move forward as our friend advised.  We attended the LDS Temple that Thursday to confirm our decision to not undergo therapy.  Again, Julie felt James very close.  She felt inspired by his courage to move forward with her intuition and not undergo therapy.  Unless it was found in a future scan, we decided to monitor her immune suppressants more frequently, and hopefully curb the possibility of it coming back since volatile immune suppression is believed to be the main culprit.  This is a difficult task since her levels tend to change not only when she gets a sniffle, but also from her underlying CF disease.  Once she got EBV last summer in part from this cause stated above, she began to feel some intestinal pain about a month or two later.  She along with the transplant team thought it was related to motility and her CF so it was treated with more laxatives.  We all know how that played out.  Hindsight is always 20/20.

The following Tuesday we went to Huntsman and told them our decision.  They were very supportive and put in motion the plan to monitor Julie.  We will have a PET scan next month and spread them out over time.  All in all, the doctor told us to "just pay attention to your body.  If you notice something abnormal please just give us a call."  They are still nervous, and we like that.  We are glad they are vigilant at keeping her well from this perspective.  Over the past few weeks, I have heard about numerous people who have fasted and prayed for Julie.  I am now convinced that this power once again has brought us a miracle, though this one is more of a process.  This process of struggle and dependence on prayer has drawn us closer to the Lord, and deepened our relationship with Him.  He isn't always going to just take the pain away, but He will always be there.  The doctor told us there was a chance the cancer was removed and now gone.  70% of the tumor was from the immune suppression being too high, leading to EBV (Epstein Barr virus similar to mono), and 30% of the tumor was mutated and if any cancer is in the blood, this could proliferate and spread despite our preventative course of managing her immune suppressants tighter.  That said,  the peace we felt throughout this process has been undeniable.  If nothing more, your fasting, prayers, thoughts, mojo, meditation, and whatever else you want to call it, has carried us through this dark period.  I really only broke down once, and I am a baby.  It was the morning after the scan, before we had the results.  I had a dream that I was looking at our family photos, when suddenly Julie and I were in those photos.  I just looked at her and she was crying about leaving her boys.  I started to bawl in my dream, and woke up doing just that.  I left the room and fell to my knees pleading with the Lord to guide us and give us strength to bare this burden.  After the decision, life has quickly turned back to normal.  Once the decision was made, we felt peace.  We have some urgency about spending time together and frankly, provident living, though important to us, can sometimes be overdone.  Live with your families.  Be with them, travel with them.  You may have a normal life, but it can and may be turned upside down in a moment.  I am not advocating irresponsible spending, but saving money at the expense of experience with your kids, is overrated.  So is any other activity that takes you away from those you love in an unhealthy way.  We really only have these monsters at our home for another 15 years or so.

Having such a poor flu vaccine this year resulted in more people getting sick.  More people being sick meant our kids were sick more often, and ultimately this was the worst winter for Julie post transplant.  Julie really is one of those special cases they talk about on the news who suffer when people decide not to get vaccinated.  I understand people have their opinions not to vaccinate, but for us, we rely on it.  Julie is vaccinated, and so are the kids and I, but it's not the ineffective flu vaccine alone that puts her and other immune suppressed people at risk; its the fact that more and more people believe it gets them sick for a short time and decide to not get vaccinated.  So what; is it really going to kill you?  If you know someone who is undergoing chemo, or is immune suppressed for any other reason, you should get vaccinated to protect them.  A simple virus for the healthy, can lead to a systemic infection for those in these situations.  A friend of mine was admitted in heart failure when they were in between chemo treatments and it was from such an infection.  All I can ask out there, is just think a little more selflessly about it.  I used to not get the vaccine for one reason or another, usually just because I didn't get around to it.  Living this life with Julie makes me want to do everything that I can to protect her.  I believe in a God who can perform miracles, and I have seen countless miracles.  Some are massive, and most are subtle.   However, I also believe that God expects us to use the knowledge he has given to us to allow those miracles to happen.  There is a reason you cannot work in Healthcare without being vaccinated.   Lastly, if you are sick, or if your kids are sick, just tell us.  We aren't offended if we can't come along to an activity.  And under no condition, please do not come over if you are in these situations.  Apply this any time you are with someone who is immune suppressed.  You may just be prolonging their life.