Thursday, November 26, 2015

Thanksgiving: Slow and Steady Wins the Race

A lot has happened in the last 3 weeks.  Julie was up and out of bed walking the day of that last post Wednesday, Nov. 4.  With one short walk that day, the next day she went for two.  When asked which way she wanted to go back to the room, she asked "Which way is longer?"  Be it 30-40', she was already pushing herself.  The docs were very encouraged at her progress, and pushed to move her out of ICU that Friday, Nov. 6.  If you thought I was a bit cuckoo for coco puffs when reading the last post, part of me would have agreed with you.  But that is what faith is sometimes, absolute crazy talk.  When we spoke with Dr. Boltax her ICU doc before they moved her, I thanked him for supporting us in the decision not to intubate.  "Yeah, that turned out to be a good call didn't it?"  he said.  Frankly, I think it saved her life.  His ability to look at the whole situation, weigh the risks on both fronts and support me not to intubate was a fruit of wisdom only experience can bring.  Had she not improved, I still think it was the right call for the time.  Julie doesn't remember much from that first week in the hospital, and she was in delirium from the high CO2 level in her blood.  When I told her what they wanted to do that Sunday, she later told the fellow "Give me one more night" to fight and show him she could do this without needing intubation.  Even in that state, she knew she didn't want to be intubated.  She told me later, she had the thought 'I can stay off the vent and live, or get intubated, and die.'  The vent obviously saves lives, and had she been on it, could have saved hers, but it is tough to come off for someone with so little lung function.  It could have meant having a tracheostomy were she able to come off.

We spent nearly the next week on the floor finishing out her antibiotic regimen.  Towards the end of the regimen, her white counts (WBC) started to fall again.  We were nervous she was going to catch something, especially in the hospital.  She had to finish the antibiotic because it was working so well to help her fight the infection.  The Transplant doctors decided to discontinue the antibiotics one day early since Ceftazidime lowers WBC.  They also dropped several other transplant and anti viral medicines that lower the WBC.  Low white counts or Neutropenia is when your disease fighting white blood cells (Neutrophils) fall below 1000.  Normal is 4000-10000.  Below 1000, you can virtually catch everything.  Julie had us all gowning up.  At the lowest point just days after they discontinued the meds mentioned above, Julies neutrophil count was 200.  Those days I didn't sleep over.  In fact during the 3 weeks she was in the hospital, I spent probably 15 of the 20 days overnight there.  We got into a rhythm.  I'd leave everyday to go receive the boys when they came home from school and relieve our nanny.  We'd do homework, have dinner together, some sort of play time, and then we would read and go to bed.  Someone would come to my home around 9:00 and I'd head back up.  Often it was my mother or her father coming over.  We are so fortunate to have so many willing to help.  The burden has naturally fallen on our parents for the most part, but we have plenty of friends who are willing when that doesn't work out.

Julie took 3 days of Neupogen; a shot that spurs the marrow once the body starts producing white blood cells.  She was still neutropenic.  They decided to give her two more days of doses.  Finally about a day after she took the 5th shot, her neutrophil count shot up; first to 2000, and then to 3200.  As soon as she was over 4000 they discharged her.  This week she was at 7000.  She came home last Wednesday November 18.  It had been 3 full weeks in the hospital.  I have never seen her in the hospital that long except maybe once when she was in for CF years ago.  I have never seen her fight to stay alive like she did in the ICU and thereafter.  She did everything she could each day, to get better.  She is extremely sore in her muscles and bones.  They suspect it is the inflammatory response of the immune system to the systemic infection she had a few weeks ago.  She worries it is something worse, but for now it is the best explanation.  Despite her being in so much pain, she would get up everyday and walk.  Sometimes it was a shuffle, and sometimes more of a walk.  Incrementally, she is better everyday.  If she looks at it day by day it is hard to notice.  Looking back a week at a time however it is pretty clear.  She still gets up and out of bed, asks to go on walks, eats when she is not hungry and/or nauseous,  does her breathing treatments regularly, and wears Optiflow nasal cannula whenever she does her treatments or is hanging out in bed.  She does this all while not noticing the improvements.  She is spent mentally and physically.  She lost 10 lbs with this infection and at best has gained 5 of that back.  However, that is just in a few weeks.  Before these infections she has had a difficult time gaining any weight.

Our hope is that we can navigate this uncharted water of staying off the drugs that suppress the white blood cells without having previous infections come back.  I know this seems like a simplistic solution, but these very drugs have saved her from some pretty lethal viruses she has picked up while being suppressed, i.e. CMV, C-diff etc.  It is a dicotomy of treatment.  She picks something up, needs a medicine to kill it since her white blood cells are recovering from chemo suppression, and that medicine supresses the white blood cells even further.  It is a balance between two evils.  Some of her anti-rejection meds have been discontinued as well for the same reason.  We are tying to allow her to fully recover all the while putting her lung graft at some risk.  She still takes the main anti-rejection medicine Prograf.  

This Thanksgiving holiday will be one to remember.  It was my year for us to spend it with my side, though Julie stayed home and I brought her a plate.  She is so gun shy to be in close quarters with a lot of people right now.  Her sweet mother came over with a plate and spent the last 4-5 hours with her.  I think they both needed it.  Two nights ago Julie was broken-hearted she couldn't spend Thanksgiving with our families.  It is really tough for her right now to mentally want to be involved with simple activities but not be able to physically participate.  Just to get out of the house for a few hours is a feat for her.  She worries about her future, and is always thinking about and researching her current condition and what she is feeling.  However, she is much better this week vs. last week.  I could say the same for the previous weeks.  I have always had a peace that she would pull through these struggles and the greater struggle of 2015; this last scare didn't change that.  However, there was great reason to doubt, that first Sunday of November.  All signs pointed to a funeral that week.  I can't explain what I was going through.  It was a time of soberness, and hope, along with the grim realization of what was in front of me.  My wife was fighting for her life.  Sometimes having a positive outlook when speaking to others around you can have unintended consequences.  People don't always realize the gravity of the situation since it is downplayed with optimism.  To that point, it is hard for others to realize how lucky we really are to have Julie around; to have her improving, be it slowly, and to be able to enjoy her company.  Her comments during that dark week were like the dews of heaven.  Everything she said was concise, but powerful.  Ironically, it wasn't an emotional week per se, but it was a somber time for sure.  The scale could have tipped either way and the two of us knew that.  I don't really know the reason for her positive outcome, nor do I need to;  but we both noticed the prayers and fasting of others carrying us.  They didn't take the horrible situation away, they made it bearable.  They made it possible, not inevitable, for her to pull through.  Had things gone the other direction, I have to think that being able to function normally no matter what the outcome might have been, was a huge blessing for me.  I have no better explanation for this than the power of prayer and fasting of others.  I truly don't believe I could have done without them.  How else would a loving God want us to feel in times of strife?  If my child is suffering, I do everything I can to comfort him.  Can God take the pain away?  For Julie, yes.  It is on the other side.  Can He take it away from me. Yes, by making it bearable; by making it part of the routine so I could still work to provide, be a student, and tuck my kids in bed at night.  Did He take pain away from Julie?  Slowly.  Why not faster?  Why not sooner?  Why does she have to keep suffering?  When is she going to get better?  These are all questions that have been asked by others to me and questions that creep into our minds from time to time.  I don't know.  But I know how much He loves her.  I know how much He loves all of us.  Just by the small incremental improvements that cause us to hope I can see His love for Julie.  Just by how we were carried through that grim week in spite of the outcome, I know He loves us.  Just by slow and steady hints that she will win this race, I can tell He loves her.  And just by her quiet fortitude amidst turmoil of body and mind, I can tell He loves her.  I love her.  And I have grown to love her by being by her side.  I never would get these moments where I can get a glimpse of what God feels for my wife without this experience.  It has never been easy, but so what?  Nothing in life is easy.  If something were, it sucks.  Usually something that is easy is a waste of your time.  Only the best things in life are hard.  Easy is fleeting.  Hard is foundational.  I think about what my life is like and it pails in comparison to the struggles of those who came before us.  Thinking of what life was like when this country was born has far greater weight to it than the struggles of our family's life.  What we are going through, all who read this will experience.  We will all go through some sort of struggle for our own lives or for the lives of our loved ones.  My hope is that seeing the strength of this one woman in a world of 7 billion people, others will look within themselves to face what might seem impossible;  that they can doubt their doubts and not their faith, and pull through the worst of times to enjoy the best of times.  Thanks be to God for the experience to be here and come to know Him through our struggles.  Happy Thanksgiving.

Wednesday, November 4, 2015

Moving Along...

Julies vitals seemed to stabilize on Friday after the first night of treatments.  Her blood pressure was normal, oxygen was where it needed to be, and she was doing well on the BiPAP.  She was able to communicate, but slowly.  Her CO2 levels were as high as 53 on Thursday night but had dropped to 47 Friday morning.  This explained her slow communication.  Her mind was quick but her motor skills were not.

Her nurse came in Saturday morning pushing for a PICC line.  She told me not to be alarmed when the PICC team came in.  It was a bit of a passive aggressive approach, but I was game for the conversation.  I replied that they could come, but Julie would probably refuse it.  Surprised, she asked why, and I explained Julie received these as a kid and had a lot of scarring in her veins.  When she was 25 they surgically implanted a permanent port for access so PICC lines wouldn't need to be done any longer and since it was so difficult to place them in her scarred veins.  I proceeded to question the reasoning for a line and she explained to me a logistical problem of having to switch incompatible meds from port to peripheral iv lines.  She was getting uncomfortable with my questioning and started talking about possible additional drugs hoping I would concede.  I was fairly confident there weren't any new drugs, but listened to her reasoning.  She followed up with "I'm just trying to do what is best for my patient."  Power play.  Interestingly enough, during chemo, this was worked around several times, and was never raised as an issue but as a process.  There were far more incompatibility issues at Huntsman Cancer and they made it work.  While she had a point that it would make her job easier, and drawing blood more convenient (peripheral lines usually last a few days), it didn't justify the procedure.  I told her if she could get the transplant team and Dr. Cahill to sign off then we would consider it.  After talking to a few on the ICU team it was clear it was being pushed by this nurse and they were accommodating the request.  It was a reasonable request, but it wasn't absolutely necessary.  No added meds were being considered and much of the justification for the procedure was hypothetical.  In fact, the drug that was dangerous to deliver in a peripheral line and incompatible was on the docket to be discontinued.  I think this nurse had good intentions, but they were driven by her motives to have a smooth day.  I finished the conversation with her around benefit risk and made my point that if it wasn't absolutely necessary, we wouldn't be doing it.  This story may come across as high drama.  It wasn't, but it was a bit of a back and forth with the team.  I asked if the Vancomycin were discontinued following a negative Staff culture, would we still be having this conversation.  The drug was discontinued a day later.  Whenever there is a procedure suggested, my goal is that it can be justified/explained for the benefit of the patient first and the practitioner second.  If it can, we will jump on it, if not, we won't.

Julie seemed to decline into Saturday as she had a harder time communicating.  She was lathargic and sleepy.  She spent much of the day off BiPAP and she could have been retaining more CO2.  Her close friend Heidi was kind enough to come spend the afternoon and evening with her while I took my boys to the UofU football game.  I had two friends reach out with tickets and this was just what I needed to decompress.  We tailgated and did some trick-or-treating so I didn't feel completely guilty taking my boys to a game on Halloween.  We bought some toys and sweatshirts at the mobile bookstore, Jack had his own Sprite with a hot dog and Ben had his own Powerade with a Hamburger.  They were pretty stoked.  We had Charles with us and that was an adventure.  On one break in the hall he booked it to the bathroom because he had never seen that many sinks and toilets in his life.  It's always so funny to see a baby/toddler get excited about something new.  We finished the night with a bike taxi.  The boys were holding their own on the walk back to the car, but this just called our names.  They thought it was pretty fun.  After spending Friday night at a friends for a sleepover and an eventful Saturday together, Ben said, "This was the best day."  As with most nights, my mom met me at my home after I read to, and put my kids to sleep.  I headed back to the ICU to sleep in the room.

Most nights Julie just wants me at the hospital, it's because she is scared.  I thought I was going to sleep at home that night and found myself pacing thinking about a cough attack, inability to find her cannula, going to the bathroom, or alarms on the medical devices.  It usually takes longer than you would like to have someone come in.  Some nurses are the exception, but even they get busy with other patients.  Julie had Heidi text me around 10 to let me know she was scared to go it alone.  I was honestly a little relieved I had to go up there.

Sunday morning, I woke up and came home to take the boys to church.  I was there just over an hour when the Pulmonary Fellow called me.  He was new to the case and he was trying to rule out all possibilities of infection.  He wanted to do a CT scan of her Spleen to look at the benign abscess she had a few months prior.  However her dependence BiPAP made him nervous to take her out of the ICU.  He was suggesting intubation, a breathing machine with a tube down her throat.  He was concerned she would crash outside the ICU and they would have to do an emergent intubation.  Again I pushed back to understand the rationalization.  My biggest concern was once she was intubated, it was a whole new territory.  It is tough to come off the ventilator with healthy lungs, and with compromised lungs its even more difficult.  I wanted to know the plan or goals to get her off the vent if we had to go that route.  To that point he said he also didn't want to wait too long till she had no lung reserve.  I left church and came right up.  After deliberating with the team the attending ICU doc John Boltax mentioned the same reservations I did.  He also mentioned the possibility of needing a tracheostomy to come off, or never coming off at all.  The fellow pushed again and John insisted we make sure this was the right course of action now.  He looked at me during rounds and asked me if Julie and I had talked about this type of situation and what she would want to do.  I replied to the team "She certainly has a will to live and get better.  Anytime a procedure is suggested like the PICC line or this, she would want to know that it is needed and needed now.  If she understood the 'why', and agreed with the need, she is quick to jump on board."  I asked for  a plan to get her off the vent and he definitively told me that wasn't something he could give me.  I asked again for goals for her to meet and it was still difficult to get a commitment.  It was clear to me that he was seriously considering the gravity of this decision and that was really comforting.  He ultimately pushed it off a day.  After I updated Julie and found I was in line with her thinking, she told the fellow a few hours later, "Just give me one more night"  to prove to him she didn't need to be intubated. Recalling this to her today, she said, "I can't even remember that." 

They took two ABG's that day and her CO2 was at a high of 65.  Normal is 35-45.  After using the BiPAP for a few hours she had brought it down to 58.  Julie was trying to show them she could improve.  Monday morning the ABG was 59 so relatively unchanged.  The push to intubate was in the rear view mirror.  She had moved some sputum, but it was bloody possibly from the pulmonary edema the first 24 hours and possibly from the inflammation the infection was causing.  I suggested we move her to Optiflow nasal cannula to help humidify her airways more effectively, move mucus, and give some respiratory support.  She tried it that day when I wasn't there.  She had a cough attack causing her to desaturate to 81% oxygen.  I suspect they put it on before it was heated up and ready.  I encouraged her to give it another try when she was up to it.  She was humidifying the BiPAP so that was helping the mucociliary clearance of mucus in the lungs.  She had increased her urine output significantly the night before mitigating our concerns about kidney function.  This has been a constant dichotomy of using Tobramycin at the same time as Prograf.  Her kidneys were stressed, but she had started to drink as much as they would allow on Sunday.  It appeared to be paying off.  In addition to this, she had insisted she get a feeding tube Sunday night.  Although the fellow didn't see this as a nutrition issue, Julie's anecdotal experience told her that having nutrients can only help give her the strength she needs to fight infection and recover.  She threw up the tube that night.  It was the first thing she was asking for as she was coming to Monday morning.  She has seemed to do just that since the second tube was placed.

Tuesday she wore Optiflow nasal cannula for about an hour and she moved more mucus than she had in the previous days.  Her respiratory rate was lower on the therapy than on BiPAP but she felt like it took more work to breathe which was counter intuitive.  Her respiratory rate was 5-10 bpm slower on Optiflow than on BiPAP.  Sometimes she said she just feels like she needs the pressure to breathe.  She is more "with it" the last few days and she is making incremental improvements.  She is on nasal cannula during the day when she isn't sleeping.  We are able to have conversations with her and she is able to chime in on conversations in the room.  The first few days was just yes and no nods with extreme fatigue.  At one point she asked me why it was so hard to keep her eyes open.  Her speech was slurred, and her motor skills were delayed and inaccurate. 

Tuesday night we did a CT scan since she was stable enough to be on a nasal cannula only.  I spoke with the Pulmonary Fellow this morning and received the good news that this looks like just a gnarly lung infection with inflammation of the airways.  They are doing some sensitivity tests of her Pseudomonas bacteria to some very new drugs that we should hear back on today.  My hope is, that this hospital stay exposed us to the very drugs it would take to kill this bacteria.  We are on one now with Tobramycin, and we just learned there were new drugs just released that Pseudomonas is sensitive to.  This could be the silver lining in all of this.  This was a serious enough situation they were willing to use IV Tobramycin on her allowing us to see how her kidneys responded.  They have been stressed but today (Wednesday) her kidney function is normal.  In addition, we are able to try some new drugs to help kill this bacteria.  We also found that it appears to look like fungal infection as well.  She has been treating a fungus called aspirgillus with Voriconizole.  They are going to do some more tests to confirm if it is a fungal or bacterial infection so they don't preemptively add new antibiotics if they don't have to.  The plan right now is to move forward with the regimen that seems to be working.  They don't want to throw a wrench in it. 

She has had chronic muscle pain throughout this process due to being more active the week before, and now due to the infection.  Just today (Wednesday Nov. 4) she told me when I had her standing for a few minutes that she didn't feel the pain she did this morning or over the past few days.  She has needed Tramadol each morning and night to get comfortable.  Today she didn't request it in the morning like she has.  It may be a sign that she is finally getting ahead of the infection.  She also asked to listen in on the doctors rounding on her.  Dr. Boltax was impressed she was more awake and wanted to be involved in what was going on.  She kept shouting out questions and I had to tell her to tell me the questions so I could ask them at the end.  One in particular that I know she doesn't feel like but needs to do was, "Can I walk?"  He was pleasantly surprised at her ambition.  They don't want her to over do it but are pleased she is trying to do more.  She asked for a nasal rinse, if she needed Neupogen shots (for low WBC), and "Can I eat?"  She also told him when speaking of the lung infection, "I want to hit it hard".  She had requested a feeding tube on the 3rd day of being admitted to start getting nutrients she was needing.  This helped her turn a corner from Sunday to Monday.  Dr. Boltax was very encouraged today in how she was acting.  

Julie's WBC came up and there is no need for Neupogen shots right now.  She finally was able to take a walk around the room, and eat a pastry with some apple sauce.  Today Julie looks better than any day in the ICU.  She still has a long road ahead, but we are glad she is at least on the right path.  Things looked pretty grim over the weekend.  We are going to keep praying for the best outcome without giving thought to the alternative.  I often get asked what people can do for us.  There is only so much need to go around and we have leaned on the same people for help with our kids deliberately so they have some consistency in their little lives.  They have been fine.  They talk about Minecraft, ride their bikes, play tackle football with each other, and tell me all about the playground when I come home to receive them everyday.  Charles just wants a set of keys and he is good to go.

Julie is very fragile right now emotionally.  She is needful of every encouraging word.  It is like she soaks it up and looks at me like a child.  She believes she has the strength to get through this.  However, after asking her if she thought she would die this weekend, she said to me, "I don't know."  Out of the blue, she asked me to sing her a hymn today.  I looked up like cousin Eddie and said "You serious Clark?"  She said, "Yeah, that one with 'Eventide' in it".  I sang her Abide with Me; 'Tis Eventide and then I Need Thee Every Hour at her request.  I finally realized being in Choir in High School had a purpose; to be able to carry a tune when my bride needed it most.  Other than that, it was a class with a lot of laughs with hiding the teachers shoes on the door jam and 70 piled up chairs.  She also told me regarding her nurse after being very sleepy Tuesday morning, "It's crazy how you can sense someones spirit with out even seeing them. She (Her nurse) is very sweet, and I can tell she cares about me."  This is why nursing can be such a noble profession.  Some of these nurses are so sweet and effective at lifting my wife's spirits.  It is such an important part of care.  

If you are reading this and spending time praying or fasting for Julie to live and thrive on one hand and thinking how she's not going to make it on the other, you need to remove the latter from your thought process.  Sometimes our doubt is shadowed by comments like "Everything happens for a reason" or "As long as it is God's will..".  While these statements have truth to them, they are not necessary in a time of hope.  They are to be acknowledged in a time of reflection.  I believe they hold us hostage to what we can accomplish through faith and perserverence.  Doubt inhibits faith.  Faith is what has carried us and helped us lead a normal life through this and many other trials.  Doubt keeps us from realizing the impossible.  "Facing the facts" can and will cause us to give up sometimes when we need not.  After all, facts are malleable just as we saw this weekend with the "need" to intubate Julie.  I am not blind to the gravity of the situation or to the will of God, but I am also not blind to the power of a loving God.  This weekend Julie and I had some pretty candid conversations.  That said we hope for a brighter day.  There is no reason for us to believe that she won't pull out of this and recover.  Frankly, I don't care if I eat crow later regarding these bold statements.  Alternatively there has been many reasons for me to believe the opposite.  I'd be lying if I told you I haven't thought about what life would be like without her.  It has crossed my mind regularly throughout our marriage.  I have learned to acknowledge and not dwell.  It does not help to think about the hypothetical beyond just that.  However, there is a peace with both of us that all will be well.  I don't actually know how this will be, but I know what I have witnessed this weekend, and that gives me more hope.  I also believe that there is real power in the faith and prayers of others; after all, what else explains how we are able to function normally in such a chaotic time of a young couples life?    

Thursday, October 29, 2015

Soaring...then crash

We had a few good weeks at home with marketable improvement from Julie.  She finished antibiotics on Saturday Oct. 24.  The lung infection seemed to be at bay.  Just like last time, she was able to eat more after they were done since she no longer had a wheezy stomach from the meds.  Her oxygen dependence was at it's lowest in months at 2-3 lpm resting and 4 when she was up and about.  Her energy was up more than ever and she was doing a lot more around the house.  She was regularly walking the hill by our home without getting wiped out.  In fact she was experiencing some sore muscles in that skinny little body of hers.  For one reason or another she crashed last night just 4 days after the med was done.  This was the same amount of time in the last post that she crashed and went to the hospital for neutropenia.  Yesterday she was feeling sore from all the activity, but her lungs x-ray looked good, and she was given the go-ahead to go on our postponed family trip to Hawaii in 10 days.  As the day wore on, so did she.  She was tired, and then she was exhausted.  At about 1:00 am she spiked a fever of 100.  She continued to try and sleep and at 3:30 am she woke me up with a terrible temp of 105 and a heart rate of 150.  She refused to go the the ER and took Tylenol to break the fever.   A few hours later it broke and she was back to 98 by 6 am.  She was feeling nauseous, and could not get comfortable.  She wanted to wait and just go to the infusion clinic at Huntsman.  After calling them in the morning they deferred to her transplant team.  We ended up in the ER mid-morning.  She was worse this trip with blood pressure of 60/30 putting extra stress on her kidneys with the limited blood flow.  They started fluids to bring the pressure up, all the while putting pressure on the lungs.  She was neutropenic (low white blood cells to fight infection), and her underlying infections went systemic quickly.  She was septic.  They admitted her to ICU and they offered a BiPAP with a face mask to give her some assistance with breathing.  Her ABG (Arterial Blood Gas) CO2 level was 53; Normal is 35-45.  I could see the fear in her eyes.  She was breathing 40-50+ times/minute; her baseline is around 25 right now, and normal is 12-20. Once she was on BiPAP, she was able to get comfortable.  Her x-ray still looks decent, but with really low blood pressure, comes a whole host of issues.  Blood being backed up into the lungs (pulmonary edema), pressure on the lungs, and low kidney function to name a few.  With the fluids, antibiotics, and anti-viral meds, she has improved a lot.  Her HR is back to 100 (her normal), blood pressure 95/53 (better but not normal), respiratory rate down to 25-30, temp is back to 37 C without tylenol, and her ABG CO2 is down to 47.  She is still on BiPAP, and will be through most the night.  She hasn't eaten all day in case they needed to intubate her.  By the looks of it, she won't have to go down that road.  If she can continue to get rid of CO2 and get that number closer to 40 they will be more confident she won't need intubation.

In an effort to get her treated quickly for sepsis, the ER doc prescribed her an antibiotic her Transplant pulmonologist told us to stay away from.  Tobramycin is really tough on the kidneys.  That alone is fine, but with her anti-rejection med Prograf being tough on the kidneys, you don't want to do both, especially with low blood pressure.  I asked him to verify with Dr. Cahill twice...he didn't.  They gave her two bullice doses, only to have Cahill discontinue once she rounded in the ICU.  Another example to stand your ground if you know where your doc stands on something.  I should have refused the med for her.  We were assured that pharmacy deliberated for 30-45 minutes and figured they had decided (with Cahill) that it was worth the risk.  After all it works wonders against the pseudomonas bacteria she has.  We weren't totally against it if they thought it was safe.  Turns out they didn't consult Dr. Cahill...did I mention 3 times....

Julie refused an ABG initially in the ER since she hadn't heard it from a physician that she needed it.  They are uncomfortable to get.  The tech who made the first attempt in the ICU looked up to see how she was doing and proceeded to prod around like an acupuncturist.  True to form Julie asked him to stop and get someone else.  He told her he was confident he could get it...he didn't.  The girl who tried after did so without any issues.  As Julie came to, and her CO2 dropped (be it just 5 or 6 points) she started to ask more questions through her BiPAP mask.  She is sleeping comfortably tonight here in the ICU.  This is another occasion where I am so grateful for those who practice medicine and the facilities available to us.  In many ways it is a selfless service.  I see the hippocratic oath carried out in my wife's behalf.  They put aside personal judgement and objectively care for her.  They never stop investigating on her behalf.  They stay calm under pressure, and roll with questioning.  The best ones, listen to our questions and aren't afraid to acknowledge what they don't know, or have forgotten.  For any folly mentioned here or in previous posts, they always make up for it 100 fold.  My wife is alive, being treated well, and with thoughtful care, and we live in a country where we can still access good healthcare.  I am so grateful.

So what is going on?  Why is it taking so long for her to recover now that the cancer is gone?  Well, she's a bit of a unicorn.  For one, she is fighting pseudomonas infection in her lungs, while being immune suppressed to prevent rejection of those lungs.  Second she is on meds to fight CMV (cousin to Mono) and Aspergillus (fungus) in her lungs that lower her white blood count causing neutropenia from time to time.  If she get's neutropenic, what ever infection or virus that in or around her, can move into her entire body.  This risk is similar to patients undergoing Chemotherapy.   That about sums it up in lay men's terms...sort of.  It is a balancing act of several variables, and truly takes a team effort from the docs and the patient

Pray on, hope on.  It's the best we have.  She was doing well yesterday, so no reason why we couldn't get there again soon.

Wednesday, October 7, 2015

Just Focusing on Breathing

We were back in the ER on Sunday this week.  We haven't been in the hospital since late June.  Chemo and Cancer are in the rear-view mirror so far as we can tell.  Julie has sputtered along through the end of summer trying to recover lung function lost during the last 3 rounds of chemo.  It has been one thing after another.  We found that the abscess in her spleen wasn't anything other than dead infection most likely from the fungal infection she caught during chemo.  Once she was done with the C-diff, she had a few weeks before she caught a lung infection.  With her sinuses still having Cystic Fibrosis, anytime her immune system is weakened, the underlying pseudomonas can spread to the lungs.  She picked up CMV (similar to mono) and just as she got better from another lung infection, it seemed to return a few weeks later.  She was having limited response to the very stringent anti-biotics they were giving her.  She was wondering if she had built up resistance to them.

About 2 weeks ago we found out through a CT scan and some blood work that the fungus that she caught during chemo had come back.  There had been no detectable levels in the blood a few months ago, so we stopped the treatment.  After getting on an anti fungal med, it seemed that she had turned the corner and started to improve.  We had a great week of lower oxygen dependence and better energy to spend time with the kids.  Last week however, she took a turn south.  Her oxygen dependence started to climb and over Friday night and Saturday night her underlying nausea she had experiencing for a few days turned to vomit.  Reading this while eating?  Deal with it ;).  When we took her temperature Sunday morning it was 38.5 C or 101 F.  Once we called the transplant nurse she told us we should come in.  We arrived to the hospital late afternoon and spent 4-5 hours in the ER waiting for a room and getting things ready.  I accessed her port and she slept most of the time.  They were able to give her IV zofran for nausea and she was able to rest.  That evening were moved to a room on the floor.  She had a very high resting heart rate at about 135 and was on 5 liters of oxygen.   It was a good thing we came in.  Her white blood cell and all blood counts were dropping.  Red blood cells carry the oxygen, and with lower counts the heart has to beat faster to deliver the gas.  In addition, her platelets were low so thinner blood takes more pumping to circulate.  On top of all this, just low volume of blood will make the heart work harder.  She was able to get a unit of blood, but as always it took much longer than it should have.  We knew they were dropping the night before so they did a type and match to verify her blood type.  The attending physician came in Monday morning and said that it was in the process but we found out later that day that the blood was never ordered by him.  Finally around 5:00 pm she received her unit of blood.  She had been delirious that day and nauseous.

Tuesday she was very tired and she threw up twice Monday night.  She slept most of the day but had better color.  The anti nausea meds make her sleepy but took the edge off the nausea.  They did another CT scan since her lymphnodes were very swollen.  The result was there was just fluid in them from all the fluids she is receiving.  It probably is also her body clearing the infections out with the anti fungal and antibiotics she is on.  Last night (Tuesday) she slept better.  When I saw her today she was much more interactive and in addition to just walking around the floor of the unit, she asked to go on a walk through the hospital.  We walked to the front of the hospital and sat in the wheelchairs out front since that's all there was available.  She then said, lets walk up to Huntsman.  I was surprised by her suggestion.  She was sitting on 5 liters of oxygen.  The University of Utah Hospital sits up on the bench and Huntsman Cancer institute is built on the mountain right behind it.  It is a steep climb for anyone let alone someone with sub 20% lung function.  I sensed that Julie had some of her grit back.  It reminded me of her first week after transplant when she was working so hard to recover and asking when she could start running.  We hit the hill behind the ER entrance and she was so strong.  I was bragging to the RT when we returned and of course Julie down played it by saying she needed to rest a few times.

The past few weeks have been demoralizing to Julie to say the least.  She wasn't seeing any improvement.  Two weeks of antibiotics only to need them three weeks later.  Another two weeks with nominal results.  And then the week before last seeing some improvement before this crash on Sunday.  Before she went into the hospital on Sunday she said "I'm hopeful."  "That you'll get better?" I said.  "I'm hopeful I won't die."  The fact that she was thinking about dying was telling how tired her body is.  This is a girl who has simply refused to die time after time.  She and I were both grateful to have the hospital to go to this weekend.  We weren't stoked about going up, but we were grateful once we were there.  No one likes the hospital, but you sure are glad to have it, along with talented clinicians when you need them.  On Monday, one of the few conversations we had, she whispered "Maybe I just need to change my attitude."  She is mentally depleted.  Seeing her walk and push herself today was evidence she is doing just that.  I wouldn't have guessed she would have done that two days ago.

We aren't naive to the weighty matter at hand.  With low lung function, we are on a knifes edge of the end of life.  Just one bad virus or cold can cause her to crash. That said, we are at peace with what is going on and the unknown outcome ahead.  Today I said to her "I'm so sorry you have to go through this."  She looked up at me on our walk and said with a smile of contentment, "It's okay."  I have really faced the facts lately of the possibility of losing her.  Ironically I have been at peace with what is going on.  Numbness ensues to the emotion that stress brings initially.  Though numbness connotes a disconnect of oneself, in fact it is acceptance instead.  People often say 'this is your new normal,' and that is exactly what it is.  Normal.

We have had a great few months.  On a whim at the last minute we rented an RV to go to Yellowstone in late August.  I have always been against this type of parking...I mean camping, but in an effort to include Julie on our trip, I bit the bullet.  It was a lot of fun, and honestly I kind of get why people do it now.  When you want to leave, you leave.  No packing, just chuck the stuff above the cab and buckle up!  Julie was able to walk around and see some of the sites with her boys.
We also were able to spend the weekend in Deer Valley with her family over Labor day weekend.  Most of that weekend was in the hotel for her, but it was nice to be together.  And last weekend despite how she felt, she mustered up the strength to spend the night with us at Park City's Mountainside Marriott.  It was a lot of fun for all of us.

We are still very hopeful that Julie will conquer yet another challenge.  The dark moments described above are inevitable in our search for hope.  We choose to recognize them, but not dwell on them.  We have had some of the sweetest moments in our marriage and family life these last few months with a certain feeling in our home that we cannot deny.  We are so grateful for these feelings and experiences and wouldn't trade them for the world.  We have grown closer together as we sacrifice for one another.  We have also had some colorful moments of stress...mostly coming from me.  Even when she is just focusing on breathing she remains calm.  She doesn't let me get away with my complaining for very long, and ultimately if I am upset, it is usually that I am mad at myself for being mad at the girl who can't breathe.  Who gets mad at a girl who can't breathe?  Well, I do sometimes.  She is still my wife, and we have a very normal marriage despite all the noise around us.  I do a decent job of destroying all those nice butterfly feelings I just talked about.

This experience has no doubt stretched me to carry some unthinkable amounts of stress that I never thought possible.  But that is what is incredible; with practice, and introspection (in my case prayer), we can get through anything life throws at us.  We can carry crazy amounts of stress and function very highly.  My habits around prayer frequency have really only increased a little bit.  Where things have changed is my focus when I pray.  The focus and deliberate approach to what I do each day is more thought out and planned.  I don't have time to do otherwise.  Julie on the other hand has told me the frequency of her prayers has increased.  She prayed regularly before, but I will often find her on her knees pleading with the Lord for direction.  I honestly don't know how we would do this without God and prayer.  As dark and as gnarly as this has been, there are moments that we have where we know He is there.  I am also empathetic to how this could completely shake someones faith in a higher power.  I have felt those feelings of wonder and doubt myself.  They are there because we are human.  But those feelings of doubt are hopeless, and binding.  They do not liberate your spirit the way hope does.  My Grandpa Layton reinforced an attitude that felt natural to me as a boy to "Be Positive."  Some might think that faith and hope are blind to the facts.  I believe they are an embrace of the evidence.  Facts are subjective to the understanding of the evidence in front of you.  There is so much we don't know about Julie's situation, and several "facts" end up being incorrect because they are mere assumptions presented as facts.  We can't live our lives around stats and facts; it can be hopeless.  It is limiting, and depressing.  Facts are there to inform, not to dictate.  Most of the time the toughest decisions require an act of faith.  If I had lived around facts and not hope, I wouldn't be married to my bride, I wouldn't have my twins, I wouldn't have Charles, I wouldn't have Julie alive today surviving CF, Diabetes, Transplant, Childbirth post transplant with stage 4 endometriosis, and an aggressive, rare Lymphoma.  Life is too short to doubt, especially your own impressions and experiences.  Hope on, and believe there is a higher power out there that is greater than man.  It's provided me a pretty stellar life despite the circumstances.

Thursday, July 30, 2015

PET Scan Post-Chemo

It's typically a good sign when I don't post often.  The daunting task to be thorough, often has me putting this off just to lead to a longer post.  I'm sure many out there see the Facebook posts about updates, go to the blog and take a quick scan for the basic facts simply because my posts are like short chapters in a novel.  But in the words of Clark Gable, "Frankly my dear, I don't give a damn."  Better to be thorough to remember the impressions and experiences as I/others read than to use brevity.  I had a relative once tell me that short often posts drive the most traffic.  I replay the previous quote.  Take it or leave it, this is primarily for my boys.  Their memory of this experience will be limited with moments of clarity, but their very personalities have been shaped by it.  I have seen from a young age their ability to adapt to new people and situations develop because of their surroundings.  It's quite remarkable really.  What might seem daunting to an outsider for a child to experience: the fragmented days, limited time with their mother, limited experiences in sports or other activities, multiple caregivers, etc; has turned out to be a pretty adaptable experience for them.  Anyone who has seen our baby Charles this year has seen a true daddy's boy if I must say so myself.  The kid absolutely goes bonkers when I am in view or in audible distance.  Last Wednesday July 22, we had an early morning procedure and had to have our kids watched overnight.  As we dropped them off at my brothers home that night, the boys and two of their cousins were doing chalk art.  As he was sitting on the sidewalk watching us pull out of the driveway, he had a look of acceptance on him.  'It's okay, I'm with my brothers, and these other little people seem familiar to me.'  There was no longing or waddling to the car, he just looked at us as we said goodbye to him...and it was past his bedtime.  I have seen him take comfort in his big brother's presence over the months as he is moving from being a baby into a toddler.  Jack often says, "He just loves you so much dad.  Every time you are in the room he just wants to be with you."  I have some serious adjusting to do about 10-15 years from now.  For now, I am soaking it up.  While he used to come after me when he heard or saw me, now I can yell to my boys asking about Charles and he will continue to play with them.  Sometimes this is for extended periods of time.

The twins have also grown with this experience.  They take an active role at looking after him while playing.  They watch what he is doing, attempting to put in his mouth and we can hear them parenting him from a distance.  All 3 are building a bond that will be with them forever.  That said, it's not all peaches and cream; Ben got in the car and just smashed a hat against Charles face the other night.  After asking why he did it, he gave a typical 6 year old response with a shrug of the shoulders.  A few weeks ago while playing with the hose in the back yard, Jack pointed it right at Charles face after he had been laughing at the random splashes.  It kinda reminded me of that guy spraying the kid in Billy Madison.  At times I feel like a coach parenting these boys, raising my voice telling them things like all we have is each other, motivating them, telling them this is forever and that friends will come and go.  I also took a line from my cousin Spencer, "I've never been a dad, and I am just learning, just like you."  It seems to even the playing field when I am upset with them.  I do notice the twins are pretty tender at times.  They want my attention more than ever right now.  One time at a family camp out, Ben was at my side telling me he wanted to play with me instead of doing the activities.  I was preoccupied with something else and encouraging him to join in the activities and he burst into  tears; "But I just love you so much!" he said.  I was crushed.  Jack constantly is asking to play or telling me about something his brothers said or did.  He too will break down at times.  Tonight he burst into tears when I left to get some prescriptions.  "But I wanted to play pass!!"  He was dying to pass the football.  He and Ben seem to understand and take what they can get.  I always try to give them the attention they need.  The common thread is it usually happens when they are hungry or tired.  But I have the clarity to recognize that it also may be their way of expressing what they are going through.  I ask them a lot of questions about what they think about what is going on, if they are worried, if they have any questions.  They pray for her every morning and night.  Sometimes its to get off oxygen, sometimes its to not get cancer again, and sometimes its to not get sick again.  We talk a lot about mom and the therapy she is getting.  We are often asking them to be quiet and talk softly.  They are still loud as hell.  Julie texted me she needed a muzzle for them the other day.  Lately she's been threatening to carry around a squirt bottle to spray them in the face when they yell.  We are top notch parents over here...but after chemo, her hearing is sensitive.  All in all things are pretty normal on the parenting and family front.

About a month and a half ago, Julie went through her last round of chemotherapy.  It was one we were reluctant to do.  The blood work had looked good since the second round, and there was no empirical data either way regarding the outcomes if we finish what would be the 6th round.  It was a choice between two bad deals.  Finish the rounds and possibly do further damage to the already delicate lung graft, or call it and risk the cancer coming back with a vengeance.  We chose to finish because of the lethal nature of this aggressive fast growing cancer we had seen once before.  Julie's Plasmablastic Lymphoma grew in Julie in a matter of days when it came back just 3 weeks after the removal of the mass from her bowel in January.  We had experienced that vengeance and wanted to limit the possibility of that happening again.  They luckily did an 80% dosing and the hospital stay lasted from Thursday June 4 to Tuesday June 9th; 5 days instead of 8.

After Julie came home that last time we were once again adjusting our volume, chaos level, and cleanliness.  Julie was parenting the boys (and me) through text to me. Her resting heart rate was 115 and that was burning her caloric intake constantly.  She went through some times of second guessing that decision of finishing the last round, especially as she suffered the days after the treatment.  Chemo treatment is bad enough, but the 2-7 days following are brutal.  That is the point where your body feels the effects of wiping out all your disease fighting white blood cells,  and you hit your nadir.  This is the low point of your blood counts.  It was almost inevitable she would be re-admitted after each treatment due to a neutropenic fever.  This time it looked like we were in the clear.  However, she was exhausted.  As anyone who has been through chemo or any other experience of utter depletion of energy, emotions can be very close to the surface.  Julie told me several times after that last round that she didn't want to forget this feeling.  Feeling so close to the Lord, and feeling so grateful for everyone around her.  She sent me this text after we had a heated discussion both in person and via text two rooms away about the boys and iPad time.  (Surely many parents out there are wrestling with the right balance of screen time...)

This thread was followed by several imogis indicating crying from Julie.  I appreciated the gratitude she shared with me though.  It was always a stress to call one of the many people willing to help us.  We usually had little lead time because each day and each hour brought different symptoms to Julie.  

That week early in June, Julie mentioned she felt like she had pleurisy, inflammation of the lining of the lung, in her lower left lung.  We found out what it actually was 6 weeks later after her first post chemo PET scan.  I will get to that in a minute.  She was very nauseous when she would sit up that week, so she spent much of her time in bed.  These weeks after chemo were always challenging for me in balancing the regular work life with the needs of Julie.  The juggle of it all always let up after a few days, but at times, there were text threads that were not so peachy as the one I just posted.  As I mentioned in a previous post, anyone who pulls the threads in the future, may wonder if I was doing anything for her.  Instead of texting back I would just get up and take care of it.  That said, when I wasn't available, you can see it in the thread and Julie wasn't shy about it.  Many times when it was too much to juggle, we would have one of our mothers, aunts or close friends come over.  The service they have rendered to us and to Julie has been truly angelic.

What happened during her nadir that weekend was something that brought a lot of encouragement to us with regard to her lungs.  That Saturday June 14, she was off oxygen for about an hour and her O2 Saturation was between 92-98, and on Sunday she spent 3 hours off oxygen.  The reason this was so encouraging, is during the nadir, you have no inflammatory response because there is no immune response.  The fact that she was saturating well told us that the issues with her lungs were largely tied to inflammation and not scarring or infection.  This was very encouraging and was a fact we have fallen back on in the following weeks.  She was rightfully paranoid and a hypochondriac during this time since she was so susceptible to infection.  We didn't need another fungus or infection to further bring her down.  Several times during the treatment I would spend many days out on the couch.  Not because I was in the dog house, but because "you're such a disease Kevin!" (Home Alone 1990).  We had to mitigate risk.  RSV was a doozy and postponed the second half of chemo nearly 2 months.  Even though we were done with treatment, we didn't need any more set backs or risks added to her plate.  I was showering the kids constantly, they were locked out of her room, but occasionally she would come out with a mask on to see and be with them.   

She had to receive another transfusion that Saturday and luckily it dropped her heart rate to a more comfortable level around 100.  Still, she was burning everything she was taking in.  We were out on the boys first real trail ride on bikes in Emigration, with Charles in tow...or Bjorn.  The next Monday she had her blood checked again.  Her white blood cell count was less than 0.02 white blood cells per microliter (mcl).  Normal is between 4.5 and 10.0/mcl.  She had no way of fighting anything off if she caught it.  We were at that point of constantly being checked and occasionally getting blood or platelets.  She was on the borderline of receiving platelets that day.  That night just before bed she started to have a nose bleed.  Without platelets, there was no way it would stop.  We put tissue in, pinched it, but frankly we only had about 20 minutes to see if we could stop it.  We headed to the ER just after 10:00 pm.  We knew we needed platelets, but anyone knows that a visit to the ER is a minimum of 6-8 hours.  It was busy.  We got the results from her blood draw just after midnight.  So we spooned on a 2.5' bed till around 3:00 am when the platelets came for transfusion.  We made it home at 5:00 am to wake my dad after he had been with the boys.  That night sucked.

After a day recovery from an all nighter but without any action Julie woke up Wednesday morning June 17 in excruciating pain.  The center of her chest and her lower back felt terrible.  It was the most pain she remembers experiencing in a long time.  She mentioned to one nurse it "was worse than childbirth."  Initially we wondered if it was a heart attack.  I cancelled my appointments and rushed her to the hospital.  She was weeping the whole way.  It was so painful for her to sit down that she was holding herself up with her hands.  When we arrived at clinic, they took her vitals, and bloodwork and found it was a common side effect of the Nulastin shot she was given when she finished chemo the week before.  This shot is given after chemo to assist the body in reproducing it's own white blood cells.  When it kicks in, it comes back fast.  The white blood cells are produced in the bone marrow.  Any bones that have a lot of mass i.e. the sternum and the pelvis, produce more bone marrow.  The pain was from the pressure of the cells rapidly reproducing.  Ironically, Claritin D can mitigate some of this pain in an off label use.  Julie had been taking it for fluid in her ears probably caused by all the normal saline she was given during therapy.  Since no one told us there was an additional reason she was taking that drug, she discontinued it when the inner ear fluid seemed to dissipate.  Julie is always looking to reduce the amount of pills she needs to take.  She has no problem taking pills and is extremely compliant, but if there isn't a clinical benefit, she requests to come off it.  She was re-admitted that day.  I just remember her standing at the bed in the infusion clinic because it was too painful to lay down.  She was so weak she could barely stay up.  Once the Delaudid arrived for pain, she was able to lay down and finally rest.  As with many stays, once I left, she sent me a list to pack a bag.  That night I sent it up with her dad so I could spend some time with the boys.  We decided to make a 7-eleven run on the bikes for slurpees.  It's a rite of passage really.  
She needed another platelet transfusion on Thursday, and another on Friday along with a RBC transfusion.  The week since that last chemo treatment, she had had 5 transfusions of blood and 4 transfusions of platelets.  The silver lining is there was no longer any sign of bacteria in her blood or lungs.  She was discharged that Saturday June 20.  There was a going away party for one of our friends in the hood and Julie wanted to go because there would be no kids there.  As she rested in the afternoon, she told me she didn't think she could even get up and get dressed.  I told her she would be glad she went and that even if we just went there and said hi to everyone and left that would be fine.  Julie is always worried I am going to want to stay too long.  I would sleep over at peoples houses if it wasn't super creepy.  I love a good party.  She mustered up the strength to get ready and go.  We ended up staying there for 3 hours.  She was so glad we went and truthfully it was me that said it was time to go.  This was an anomaly.  It was great to see her talk with so many people who have been thinking and praying for her.  It was inspiring to see them and to be lifted by their encouraging words.  Each day and each week there are small feats of accomplishment like this.  The road is long, but looking back we can see improvement.

We have had random set backs not related to the chemo.  That Sunday June 21 she was nauseous from the sheer amount of pills she had to take.  Sometimes they get stuck in the esophagus.  She again mustered up the strength to go to her brother's wedding shower.  She was glad she made it and it was great to be encouraged by her family members.  Over the next few days she was still very weak and very tired.  I have several texts where she asks me to check her blood sugar.  I remember checking it and then getting the needed OJ or food or insulin to make adjustments.  She was just so drained that week and she wasn't able to hold anything in.  As always we were in contact with the clinic and on Tuesday that week we were taken to the Acute care clinic for fluid and some testing.  We spent much of the day there and the infectious disease doctors came in and wanted to admit her.  She was getting IV antibiotics at home and we figured much of the gut issues she was having was from the prolonged use.  We pushed back a little bit and they conceded to let us go home.  We were just worried about getting another bug at the hospital.  Turns out we were too late.  The next day on Wednesday they called her and let her know that a culture came back positive for C difficile enterocolitis, a gastrointestinal infection.  Most likely she got it at the last hospital stay.  I rushed up to Huntsman to pick up some heavy antibiotics just before they closed that day.  She seemed to react well to the meds pretty quickly.  

Looking through our texts together, she continued to parent, request food, help with meds, using the Airvo high flow nasal cannula, or ask for chest PT to pound on her chest.  Chest PT helps break up any congestion, and is therapeutic for her as well.  I also found several grocery lists and prescription lists sent late at night when the kids were in bed.  Other set backs included more indigestion, possibly related to the C Diff, but more likely related to her not taking Miralax regularly.  It is extremely discouraging for her when she has pain or discomfort amongst the low energy levels.  At times she has told me she feels like she is losing the fight.  Other times she is just feeling bad she can't do more with the family and that she is holding us back.  I assure her this isn't the case, but I don't help the situation when I ask her if she feels up to doing different activities.  It is sometimes something as simple as going to a park or up to my parent's cabin 15 min away.  I do it to push her along, and often realize it is discouraging her since she feels she has to say 'I can't, I'm sorry.'  I really don't mind when we can't do these things, but it is a burden she lays on herself.  She also feels bad since she doesn't have energy to entertain the boys.  Anyone with little boys knows they are full of energy and stories.  I often tell her that I have had a lot of peace about her long term outcome; that she has to look for small incremental improvements to mentally help her along the way.  Being a caregiver is a process.  Learning how to motivate without discouraging is a skill I am continuing to refine.

Julie's heart rate continued to be high towards the end of the first week of July and her Oxygen dependence was around 3-4 liters.  She suspected she was fighting something based on her past experience.  She had had no sign of bacterial infection in her lungs though she was on an antibiotic as a prophylactic, the C Diff was being treated with antibiotics, and she was still on an anti-fungal medication from a fungus she had caught in between chemo treatments.   There was no explanation as to why she felt so much discomfort, and pain at times.  She spent the day getting ready for her brother's wedding on Friday July 8th.  She was able to have pedicures, have her real hair wig styled, and received a few makeovers.  That day was a long day, but she looked great.  It also made her feel good to get ready again.  She had no eyebrows and no eyelashes so she wanted to get the makeovers. We had a great night at Matt and Whitney's wedding.  It was so good to see happiness in this family's life.  They deserve a break and we are so proud of Matt and Whitney.  It was a beautiful ceremony.  We hung out all night at the same table and Julie was a trooper.  

That Saturday after the boys and I spent some time up Little Cottonwood with friends, we hit our first movie with the family.  It was fun to do something normal for a change.  Psychologically, the more we do things outside our home, the better Julie seems to be.  The balance is not wearing her out physically.  When she climbs stairs, her legs still buckle.  The lung transplant team had her on 40 mg of Prednisone after chemo to help and late in June they decided to start to taper her off 5 mg/week.  Prednisone gives her energy, helps with inflammation of the lungs, but it also makes you put on water weight, and wastes away the muscle after prolonged high doses.  Some of her weakness is from the chemo, but some of it is from the wasting of the muscle.  Every weekend when she drops down, she immediately has a few rough, low energy days.  These are the days she is so hard on herself mentally.  Each time I have to remind her how she felt the day before the dose drop.  She has been adjusting well to each dose drop and her oxygen dependence only goes up the day of the drop and then normalizes.  Its a good sign that she is adjusting.

On Tuesday July 14, Julie had the long awaited PET scan to see if the chemo worked.  We had to wait 2 days for results.  On Wednesday she had her 3rd Pulmonary Function Test (PFT) post chemo measuring her lung function and x-rays of her lungs.  Things are still unchanged.  She is at 24% (FEV1), lower than where she was with her diseased lungs before transplant just 4 years ago.  Her lung capacity is climbing however.  It is around 65% (FVC) and she started chemo around 90%.  We believe that much of her lung function is influenced by her sheer weakness.  If her muscles have atrophied and need to be built back through rehab, so does the rest of her body including the breathing muscles like the intercostals.  We are also encouraged that she recovers quickly when her oxygen desaturates from being active with too low flow.  

Thursday July 16 we saw the Transplant team first.  Her pulmonologist came in the room like Kramer.  "You have an abscess in your spleen."  The results from the PET scan were back and she pulled them up.  She had already spoken to our oncologist, and they were going to try and take a biopsy that day.  It was the only thing that showed up on the scan and luckily it was being contained by her immune system.  It looked like a dark circle with a glow of inflammation around it.  Its in the lower right side of the picture.  They didn't know if it was infection, fungus, dead lymphoma, or lymphoma.  The latter was very unlikely.  But this explained the pain in the lower left lung she experienced that felt like plurisy in early June.  They didn't see it on any of the CT scans in May and June, but in retrospect when looking back they could see it on the CT scan's done in June and early July.  In addition, the x-ray showed some air trapping in the small airways.  Sometimes this can be from scarring of the bronchioles, and sometimes just from inflammation.  The fact that albuterol, a brochodialator is still helping her is a good indication it is inflammation.  We grabbed some lunch and headed to the Oncologist to see what she had to say about the scan.  We already knew it looked good, but we looked forward to her educated opinion of how things looked.  As we sat in the waiting area on the 2nd floor of the Huntsman cancer hospital, we reflected about the mornings there in complete agony; throwing up, pain, and just all out discomfort.  It was sort of weird to be sitting there without any noticeable issues.  When her doctor came in to talk to us she asked us if we wanted to see the scan again.  We said of course.  She went through it and at one point said, "Other than the abscess, your scan looks perfectly clear."  It made our day, and apparently hers as well.  We had something else on our mind now, but we enjoyed the good news.  It was so nice to put that behind us.  That said, we are only about 60% of the way through this overall struggle.  It will take another 6 months to feel better again.  At least it only gets better from here.

The next Wednesday July 22 we had the biopsy.  The radiologist couldn't give any results at the time, but he said it was not a liquid.  That most likely rules out an infection, and leaves the possibility of a fungus, or dead lymphoma.  Live cancer cells are unlikely since the area was not lit up  like it was on the scan here taken just before chemo in late Feb.  The intensity of this picture is turned way down because all the activity would have it white if it were the same contrast as the picture above. If it is fungus, it will be somewhat of a relief since the fungus she had in her system when she was undergoing chemo was thought to be in the lungs.  Having it contained largely in the spleen would be a blessing.  Fungus can create a host of issues if found in the lung and not treated early.  We know one transplant patient that passed away from this.  

Since Matt and Whitney's wedding on July 8, Julie's hair, eyelashes, and eyebrows have all grown back in.  They were only gone for about a month.  She has a solid 3/16" of hair again, and there is a lot of it.  It's amazing how good she looks from this added hair.
Since writing this we received the preliminary results of the PET scan.  It was just dead tissue.  All the tests so far have shown negative for fungus, lymphoma, or dead lymphoma.  Whatever it is, Julie's body contained it and it is going away.

Keep praying for Julie to get her strength and health back.  We are hopeful she can repair and rehab her lungs.  It really is a slow fight so you will have to be patient.  We are just so grateful for the prayers and support we have had.  As I have said many times, there is no logical explanation around how well we have done through all of this other than the spiritual and physical support that has been so selflessly given to us.  The odds were stacked pretty high against her (once again) and she continues to push through them.  Setbacks will come and go, how we face them makes them go a lot sooner.  God Speed everyone.

Monday, June 8, 2015

"Its hard when its just you here Dad"

The amount a wife does for her husband and children is staggering.  Simply having Julie home helps life to function normally.  This experience inevitably forces my 6 year old twins to grow up and take care of themselves a little more than the average 6 year old.  The boys wanted to just have cereal one morning and I conceded not to give them their eggs.  Sure enough as I was putting down a sick crying baby, they came and told me they were hungry around 10:00 am.  Jack was offended since I told he and Ben to leave and go downstairs while I put Charles to sleep.  The title of this post is what he said after I decided we needed to stroll Charles to get him to calm down.  It was heartbreaking to hear.  He was crushed that I was upset with him.  These boys have been such good kids through all of this.  They have taken care of themselves, their brother Charles, and frankly me.  There are many times when I just need them to play with their brother and they will spend hours with him in his room or downstairs.  Best of all, they are still playing with him when I have a break and can check on them. During their mother's chemo, they have lost some teeth both at home and at the dentist (just because they are six and not from their wrestling).  They also graduated kindergarten a little early since we took them out in early May and we have been on plenty of run/rides.  They ride their bikes and I run while I push Charles in the jogger.  They usually consist of a few breaks, a treat, and a playground mixed into a 4-6 mile trip.  They do really well and frankly I am just grooming them for bigger longer excursions later in life.

Julie has been doing crappy/good; She mostly feels like crap, but she has been improving.  She finished CODOX and came home on my birthday.  As with the first round, she was very lethargic.  She wanted so badly to do something for me that day or go somewhere.  We talked about leaving, but frankly it wasn't practical.  I had some self pity at one point and realized how big of a tool I was for wanting to go somewhere; my wife was home, and that's all that mattered.  The night was perfect.  We had some cake, and Julie was able to just chill with us.  Julie prayed that day to have the stress of the boys staying healthy become easier to bear.  After getting RSV the first time around, she was in survival mode.  She desperately just wanted to be able to be home,  She said in a text "I want to be around my family at home not stressed every second that they are sick.  I want for once to draw a picture with the twins or roll the basketball with Charles."  She was missing some of the simple things that she hadn't been able to do for a few months now.

On Tuesday May 19 we went in for blood.  Julie hadn't hit her nadir so we had a few more days ahead of us.  During that clinic visit with her oncologist, Julie told her she did not want to continue until she was off oxygen. She had stressed over this more and more as the treatment has gone on.  She was sick of not seeing much improvement with her lung function.  The cancer levels in the blood had been undetectable since after the second chemo treatment.  While we recognized the possibility for lymphoma to show up anywhere, we saw significant changes in her lung function after contracting RSV and getting a secondary lung infection.  Julie would often say, they are so focused on the chemo that they are ruining my lungs.  After about an hour long visit and some hard discussion we realized we had to just make a choice.  We petitioned that she just wanted to know that she could improve before she kept going.  Dr. Glenn explained it this way.  They don't want to see her on oxygen indefinitely, however, if this cancer comes back, it will come back fast and will be lethal.  In her words "there would be nothing we could do."  While the lungs are vital to her life and to her quality of her life, they wanted us to focus on what had the more eminent risk, which is the cancer.  She conceded and agreed.  They had her on 30 mg of Prednisone still and that seemed to be helping.  We had planned to be admitted that Friday for M, her 2nd to last treatment (Methotrexate).  That entire week she was having a hard time breathing for a lot of reasons so we started to use the Airvo unit for high flow nasal oxygen therapy.  It is a unit my company makes for the home that is typically used in the hospital in order to deliver oxygen to patients who need a little breathing assistance.  In addition it can help with inflammation of the small airways.  At this point, she was only taking antibiotics as a prophylactic. As the week progressed, she started to need more oxygen in the mornings.  She was short of breath and as her white blood cells came up, the inflammation seemed to increase.  She called her pulmonologist and they put her back on 40mg of prednisone on Friday.  This pushed the admit initially to Monday Labor day, consequently moving it to Tuesday.  The good thing was as the days progressed on, her dependence would drop.  She noticed that even if her heart rate jumped up, as soon as she stopped doing what she was doing and took a rest, she would recover quickly.  That weekend was a good one.  Julie might say differently, but I watched her improve.  We were concerned with her lungs as always.  The Airvo along with the antibiotics and the increase in steroids seemed to be helping.  She would do several neubulized treatments throughout the day and it's not uncommon for me to see "will you come pound on my back" in our text thread.  The nubulized treatments help open her airways and cause her to cough to move things around.  From the intrathecal (spinal tap) of chemo she received the week prior, she would get a head ache each time she coughed.  From all these efforts however, she found herself feeling heavy with fluid in the morning but again, as the day went on she needed less oxygen.

She also was taking Ativan to help her sleep and calm her down.  While I was at school that weekend, she sent me a few texts telling me how tired she was.  The boys were on an adventure with one of our neighbors and she was there just resting.  One of her friends brought her Chipotle that day and Julie said "I prayed so hard that I will get some energy and won't feel so tired when she gets here."  Later on she told me she felt a lot better once the friend arrived.  "Prayers work" she text me.  On Labor Day we were able to go down to city creek and just hang by the fountain.  It was really nice to just chill in a public place.  The boys started out by getting a little wet and within minutes they were drenched.  We are feeding Julie as much as possible since her heart rate is still north of 90bpm most of the time.  She is burning everything she is eating.  That night we had burgers and hung out at my parents while the kids played and some friends came over.  While I was with the kids, Julie had some time to talk about some of her apprehension to our friend and my mom.  I think it really helped her to talk it through and get ready for the admit the next day.  Admits are never efficient and neither is the set up of drugs.

On Tuesday May 26 Julie was admitted.  IN the morning we went to the lung transplant clinic at the UofU hospital.  They had a Pulmonary Function Test done (PFT), the first of which she has had before the tumor was removed in January.  To our dismay but not surprise her lung function was 24%.  It was around 80% in January.  This roughly where it was when she received her new lungs just 4 years ago.  She also is just over 100 lbs despite her football player eating habits.  The good data point we walked away with was her x-ray looked notably better than from 3 weeks prior.  Her pulmonologist told her it was a good sign that she seems to have responded well to the steroids.  It is one good sign that Julie's goal to come off oxygen in the future isn't that far fetched.  She encouraged us to finish this out so she could start focusing on her lungs.  We then headed up to Huntsman for the admit.

Just one day later she was done with her dose.  Now they had to reverse its effects with other drugs.  I spent the week with the boys and a little time up at the hospital in the evenings after work.  Charles was sick with Staph, and the twins had a year end report to give.  Charles wouldn't take a bottle for a few days until we had a few doses of antibiotic in him.  We were so grateful once he would take it again.  He needed the calories and liquid.  For the sake of getting the baby better, it was good that it took forever for Julie's chemo levels to drop.  They were finally low enough for her to come home on Sunday May 31.

Last week was a great week.  Luckily the last treatment doesn't knock her down like the others.  She really filled the role of mother for so much of the week.  Everyone is currently healthy so she spent a lot of time with the boys watching them play in the sandbox, rocked Charles to sleep and just started running us around the house again.  It was a nice change.  She is still very weak and gets winded easily, but this week was a close to normal as we have had in a long time.  Thursday was her clinic visit.  I told her I believed they would admit her that day.  She was certain it wouldn't be till the following week.  I was right.  I spent much of the day at Huntsman getting her admitted.  In between there on my lunch I took the boys to the dentist to have some teeth pulled again.

In a matter of 1 day Julie gained 13 lbs.  The only problem, it was all water.  She asked for lasix to urinate it off, and unfortunately they had to wait till the 5:00 am labs to determine if they could do that.  Saturday she lost 6 lbs of water, and then again today she lost some more.  Having all that water weight makes it hard to breathe, raises blood pressure, and is simply uncomfortable.  It does protect her kidneys though as she is receiving the chemo.  Her kidneys need to stay in high functionality for the years and decades to come!

We took the boys to their last day of school since it was an outdoor concert.  They had a great time being there.  It was good to have them see and be a part of the last day.  They missed several events with friends and their field day to kick off summer.  Luckily they aren't too aware unless we tell them.  Julie has been torn up in guilt about keeping them from activities.  Luckily for her and them it is for only a little longer.  In addition, it is an incredible blessing they are twins.  They are so self managed during the day.  They have so much fun together and since there are two, they make for pretty good babysitters of their brother Charles.  They dote on him and he adores watching them.

Julie gets her last dose of IVAC tomorrow.  She will need one more intrathecal before she is sent home mid-week.  After that, we are done with chemo.  We are so ready to focus on building back her strength.  She most likely will crash and will need blood this week.  There is a chance she will be re-admitted as well, though she told me she's not going to plan on it like I am.  We have a long road to recovery, but we are at peace.  It has been incredible to see the amount of unselfish service that has been rendered on our behalf in the last 4 months.  As Julie has said of many people around us, we have had angels to bear us up.  For those around us, they have attested that we have gone on and functioned at a fairly normal level.  A lot of that has to do with the meals that have been brought each night.  We haven't had a weeknight without a meal since this started.  Unbelievable.  It also has much to do with the willingness our parents and friends have had in taking our kids or just being here while I visit her after they are asleep.  I don't know how many times we were at the hospital or how many days but I know it is the vast majority of the last 120 days.  The strain this must have caused those close to us at times has not gone unnoticed.  We are forever grateful to you for your angelic service.  No doubt that this ability to function at a high level has to do with so many more who do not regularly see us.  It is your prayers that have carried us.  It is your fasting.  It is even just the thoughts.  There is no explanation otherwise.  We have been carried by a Savior who loves us and loves you.  I want everyone who reads this to know that this is for you.  Not all things we pray for will come to pass, but the fact that the deepest desires of our hearts brings us to our knees time and again, will always help me understand the why.  

She has had incredible care despite all our rants in this blog.  Huntsman is truly a world class facility as is the UofU hospital.  As I have said before, I am forever indebted to those institutions and caregivers for prolonging this family's life here on earth and assisting in us being with each other for longer than ever expected.  Julie has tried to die a lot of times, and she's not very good at it.  The next goal in the coming months is to come off oxygen.  This is a pretty lofty goal but one that her pulmonologist thinks is possible.  And in the spirit of Lloyd Christmas, "So you're tellin' me there's a chance?!"  We fully expect it to happen.  Faith is not believing something can happen.  Faith is believing it will happen.  So many things we have faith in don't ever happen (see my post Carried in February), but we find out why through the journey.  We know Julie has the spit, the fortitude, the perseverance, dedication, compliance to therapy, and most of all faith that she will make it.  In the words of our close friend Whitney Butler, "Why not?  You have beat the odds so many times.  You are a living miracle."  Time and again this has happened.  This time, it wasn't without struggle, and frankly we are in the middle of the battle.  But these battles go on.  We have to win each battle to win the war.  We all go through these battles.  Some are not as visible as this, but we are all experiencing the same emotions as we face challenges.  My hope and prayer is that this experience will affect far more people than the few it touches directly.  We have felt the arms of the Savior around us and hope you do too as you face your challenges.  Please continue to fervently pray for Julie and her goal to get back to a "normal" life.  I promise you, what you see is not something of our own but it is of God.

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.