"Who's My Quarterback?"...Navigating In-patient Care

     My recent surgeries and extended stays in the hospital were an eye opener into our in-patient healthcare system.  Despite the doctor missing my fractured femur, I feel I otherwise got good medical care.  But, I sometimes also felt confused and overwhelmed.  There was a team of physicians who saw me during my admissions:

• Hospitalists, (5 different ones)
• Surgeon, and surgical residents
• Oncologist/Hematologist
• Infectious Disease specialists, (5 different ones)

     The hospital is a large medical center and teaching hospital, so I expected there to be residents and medical students.  What I didn't expect was the number of different attendings that would be involved in my care, and my resulting confusion...I needed a medical point person. With so many physicians coming to see me every day, I started to ask them each, �Who's my quarterback?"  Interestingly, there wasn't one answer.  Most said it was the hospitalist, but two of the hospitalists said it was my surgeon. 

Here are a few highlight experiences:

     1- Every time I met a new hospitalist, I had to tell them my long and complicated medical history...including my stage 4 cancer diagnosis, hip replacement, femur fracture, and multiple complications.  Each hospitalist seemed to know some parts of my history, but none knew my whole story.  I wanted to trust that they had each read my chart, but it didn't seem like it.

     2- Although I only dealt with one attending surgeon at a time, there were 4 orthopedic surgery residents that I saw. Of the groups of doctors, this sub-team seemed to have the best communication between each other and with me.  But, there was confusion about which analgesic medications I should be taking since a few of them wrote orders for different pain meds.  In total, I was offered 6 analgesics: Norco, acetaminophen, oxycodone, tramadol, gabapentin, and Celebrex. If I was inclined to do so, I could have taken all of them.  (Any questions why we have an opioid problem in this country?)  Not knowing which painkiller was the best for me, I asked to speak to a Pharm D., who came to see me after she had reviewed my chart and pain scores.  I told her I would ideally like to be on a non-narcotic agent that would treat mild to moderate pain.  After a long discussion and based on the type of pain I was experiencing, we settled on gabapentin and tramadol, (a milder narcotic.) I took the reins on this one.

      3-  A day or two after my 3rd surgery, a nurse came into my room with an arm-load of IV supplies.  She told me that Dr. ??? (I didn't catch the name) called in an order for an IV medication and she was there to start it.  I told her that there must be some mistake because I've never seen Dr. ???.  The nurse told me that Dr. ??? was an infectious disease specialist.  I clarified that I had never met Dr. ??? and would never agree to an IV medication ordered by a doctor who had never examined me nor spoken to me.  The nurse paused, stared at me for a moment, then turned and walked out of my room with her armload of IV supplies.  Several hours later Dr. ??? came to my room, introduced herself and explained the need to start the IV medication.  With this discussion, I understood the need, and it was started.  

     4-  I'm on 7 medications now and when I was in the hospital, I was on a few more.  I became concerned about the interactive effects of being on multiple medications.  I Googled "drug interactions" and there are several helpful resources.  Input your medications and they give very important information about the effects of multiple medication use. I encourage everyone to check out their meds.  Here's one site:

https://www.drugs.com/drug_interactions.html

     In theory, the hospitalist, (usually an internal medicine physician), coordinates an in-patient's care.  In my experience, because a different hospitalist came to see me on most days, the care felt very fragmented.  In a move of necessity, I became my own quarterback.  I got a notebook and wrote down everything...medications I took and the time I took them, the names of the physicians who came to see me and what they said, when I went to physical and occupational therapies, my vitals (blood pressure, heart rate, temperature), and how I felt that day.  This detailed log turned out to be very helpful to me and my doctors.  Some, rather than reading my chart would ask me their question, I would reference my notes, and decisions were made.  I will always bring a notebook to any planned in-patient stay I may have in the future.  

     

  

     Medical care has become very specialized...so specialized that specialists don't always seem to have the ability or time to see the big picture of the patient.  Additionally, in my experience, hospitalists are spread thin and were not able to make me feel assured that they were coordinating my care.  So I say, 

             "BE YOUR OWN QUARTERBACK!"  

 

Quick Update: Hip and Cancer

Spring at Wynn and Luna's

     As of yesterday, I've been home six weeks.  In this time, I've gotten significantly stronger, but I still have a ways to go.  

• No more walker and the rental wheelchair has been returned.  I need to use a cane, but am trying to get around the house without it for increasing longer periods.  (My limp is  significant, however.  Gotta work on that.)
• Wound vac...gone two weeks ago.  This was a big step forward for me.  No more being attached to a 4 lb. pump by 4 feet of tubing. The incision is slowly healing and I only have to see the wound care PT once a week now.
• IV antibiotics...done last week.  Now I'm on three oral antibiotics, but with the end of home IV treatments, I'm done dealing with tubes. 
• The hospital bed was returned three weeks ago because I am strong enough to make it up our stairs.  
• After a few practice runs, I'm back to driving. 
• PT 3x/week continues to go well. 
• I'm going back to work this coming Monday.  My employer, AMITA-St. Alexius Medical Group, and in particular my manager, Marianne, have been incredible in supporting me as I negotiate this unexpectedly long time off.  I don't qualify for FMLA because I'm not a full-time employee, but Marianne and my director, Holly, have assured me that my job will be protected.  I opted to take this time off as unpaid, so my employer doesn't have a way to deduct my health insurance premiums...so they are billing me directly.  I need this job because I need (great) health insurance, so I want to get back as soon as I can. Plus, I miss my buddies at work and our patients!
• Although I don't have any imaging studies until next month, (brain MRI and CT scans of chest, abdomen, pelvis), my most recent blood tests for tumor markers were all normal.

     Thanks, family and friends, for your continued love and support.  I'll do my best to keep you updated as things progress.

More Spring at Wynn and Luna's

Because Stage 4 Cancer Isn't Enough-Part 3

     I did my best to present Part 3 as concisely as possible.  I am aware that my family and friends, who have been incredibly supportive to me, may be approaching the point of "Luna Fatigue".  As exhausting as my health complications have been to me, I see that supporting my recovery is taxing to them, too.  

Our Conversation with Dr. R., (my first surgeon):
          -Several days after my second, reconstructive, surgery, Dr. R. came to my hospital room.  It was around 7pm and Wynn was with me.  We had looked forward to meeting with him.
           -One of the reasons I chose Dr. R. as my surgeon was because he has a gentle manner.  Although that night he did not say the words, "I'm sorry,"  his demeanor was that of contrition.  Appropriately so. Whatever he said to us that night, it has been enough for me to work toward finding my peace with his mistake and doing my best to move forward.  I realize that I not only need to heal physically, but emotionally as well. 



Coming Home:

Compliments of Nathan

           -...required a lot of prep.  Wynn and Nathan made arrangements for a hospital bed (and wheelchair) to be delivered and moved furniture around to create a bedroom area for me on our first floor.  They stocked the 'frig with my 'usuals & favorites' and equipped the bathroom so it is accessible for me.  I was so relieved to return home and felt so welcomed. 


Current Therapies:
          -Because I had three surgeries so close together, with subsequent complications, my incision is having difficulty healing.  So, twice a week I am seen at a wound care center.  For the past month I've had a wound vac, which helps draw off the excess fluid in my hip to encourage healing. So far, things seem to be headed in the right direction.  Slowly. Nina's been especially helpful not only getting me to my appointments, but patching my dressing when there's a leak.
          -I go to physical therapy 3 days/week and do my exercises daily.  I hate to brag, but I'm kicking ass in this department.  
          -Using my chest port, I'm infusing an antibiotic twice a day.  I don't mind doing it, except each infusion takes about 2 hours. I'm also taking an oral antibiotic.  The IV medication ends at the end of May and then I'll probably take two other oral antibiotics for several months.
          -Because of the DVT and pulmonary embolism, I'm on Lovenox, a blood thinner.  Unfortunately, it's an injection into my abdomen twice daily, for three months.  
          -I'm taking two medications to help me manage pain.  I find them necessary, especially prior to PT appointments and home exercises.  
          -I still take my oral chemotherapy, Xalkori, twice a day to keep my lung cancer in check.

Pain:
         -I have identified three different sources of pain; bone, muscle and incision.   The bone and muscle pain seem to get incrementally better each day.
The most problematic is the incision. The pain medications I take make all the pain tolerable throughout my day.

On Having MRSA:
          -Just before Mother's Day, I called my infectious disease doctor's office.  I told the nurse that my extended family was having a brunch and little children and babies would be there.  Before I could ask my question, the nurse said, "Oh Honey...hasn't anyone told you that you're not contagious?  The infection is isolated to your hip." No one had said that to me and she put my concerns to rest.

The Future:
          -If I can beat this infection, then I all I need to do is continue rehab.  Right now I'm using a walker, and am learning to tolerate more weight on my bad hip.  Independent walking as soon as possible is my goal.
          -If I don't beat this infection, I'm looking at two more surgeries.  The first surgery would be to remove the infected hip appliance and replace it with a temporary antibacterial appliance.  Apparently, the material the antibacterial hip is made of isn't intended for permanent use, but absorbs antibiotics well. I'd have this temporary appliance for about 3 months, and then go back to surgery to get a permanent hip.   
          -It's a waiting game, so in the mean time, as I get stronger, I hope to go back to work in early June.  My surgeon continues to say, "We'll see how it goes." 

     


     So... that's where I am right now.  I'm working hard to be as healthy and strong as possible just in case I need more surgeries.  I'm also working hard to find my peace with this whole mess so I can move on with my mind, body and soul as intact as possible.

Please, wish me luck!

          

Because Stage 4 Cancer Isn't Enough-Part 2

      As I sit down to try to write Part 2, I'm finding it difficult to put my thoughts together.  I haven't yet wrapped my head around the events of Part 1, and even wonder if I don't have some post-traumatic stress going on.  Thinking that, with the home physical therapist's directions, I was walking around, including stairs, with a broken femur for four days makes me cringe.  On top of that, due to the fracture, I bled so much into my hip that my hemoglobin fell to 5.0 g/dL, (normal range for women is 12.0-15.5 g/dL).  The American Association of Blood Banks' guidelines recommend transfusion at  7-8 g/dL. Although I received four units of blood before the second surgery, as I said good-bye to Wynn, Nathan and Nina, I worried that I would not make it out of that surgery OK.     




     The second surgery with my new orthopedic surgeon, Dr. J., went well.  Here's the X-ray:

     The five bands around the stem of the artificial hip are there to support the fractured portion of my femur. The break is hard to appreciate on this X-ray, but it's on the left side of the stem and splinters downward.




     During all the drama, there was a moment that made me and my family laugh...

     As I was waking up in the the recovery room I was confused, and loud.  I heard male and female voices, that I didn't recognize - which turned out to be Wynn, Nathan and Nina's.  So I started shouting questions:

          Me:  "Where am I?"
          Nina:  "You're in recovery.  You just had surgery."
          Me:  "Surgery?!  For what?! What happened that I'm here?!"    
(Remember, I'm yelling. And I have no idea why these people are giggling.)
          Me:  "Who are you people?!"  
(Then I looked down at my chest and I saw the hospital gown I was in.)
          Me:   "Whose clothes are these?!  Where are my clothes?!"
(More giggling.)
          My thought:  They're so rude.

     Oddly, I remember this recovery room tantrum with great clarity.  With anesthesia and an amnesiac, most folks wouldn't.  This memory is one of few moments of levity I can muster up.

     Several days later I opted to go to a rehab hospital rather than going home.  Along with skilled nurses to watch me, I would get PT and OT twice a day, rather than twice a week, (in home therapies), if I went home.  As far as rehab hospitals go, mine was a very nice one.  It was clean, nicely decorated and most importantly to me, it didn't smell funky.  I was there 10 days, getting stronger with therapies, until I started spiking fevers. 

     So...I was sent back to the large med center, where I had more tests, (blood, ultrasound with hip aspiration, and MRI).  I was found to have a good sized abscess in my hip, along with three pockets of hematoma.  My surgeon explained that the abscess needed to be removed to maximize the effort to fight a suspected infection.  Additionally, hematomas, (solid areas of clotted blood), are a great place for infections to grow and they, too, needed to be removed. A few days later, I was back in the O.R. - my 3rd surgery in 24 days.  Dr. J. debrided my hip of the abscess and hematomas, irrigated with lots of saline, applied antimicrobial sprays, and placed antibiotic beads in the joint which, overtime, slowly release an antibiotic.  He sent biopsies for culturing to the lab to check for infections.

     The results indicated that I have a staph infection in my hip, infamously known as MRSA, (methicillin-resistant staphylococcus aureus).  Being told I have MRSA felt like I was being told I have head lice. (Yuck.) The infectious disease specialist explained how common MRSA is, especially in patients that spend as much time in the hospital as I had.  I, of course, Googled it to learn more.  Here's what the Mayo Clinic website on MRSA has to say:

Most MRSA infections occur in people who've been in hospitals or other health care settings, such as nursing homes and dialysis centers. When it occurs in these settings, it's known as health care-associated MRSA (HA-MRSA). HA-MRSA infections typically are associated with invasive procedures or devices, such as surgeries, intravenous tubing or artificial joints.

Another type of MRSA infection has occurred in the wider community � among healthy people. This form, community-associated MRSA (CA-MRSA), often begins as a painful skin boil. It's spread by skin-to-skin contact. At-risk populations include groups such as high school wrestlers, child care workers and people who live in crowded conditions.

[https://www.mayoclinic.org/diseases-conditions/mrsa/symptoms-causes/syc-20375336]

     It took a lot of reading for me to find a comfortable place to be with MRSA.  The good news is there are relatively new antibiotics that are now used and many of us beat the infection.  I started I.V. Vancomycin in the hospital and switched to I.V. Daptomycin when I was discharged.  Due to some side effects, I switched back to Vancomycin, which is a 90-minute I.V. therapy, twice daily.  I've had to juggle my appointments to work these into my day.  I'm also taking an oral antibiotic.  Right now, the end date for these treatments is planned for May 30th.

     Once I was set with the antibiotics, I was set to go home.  But of course, I was missing one last possible complication.  On the morning I was planning to be discharged, an astute 5th-year orthopedic resident noticed that my breathing seemed a bit labored.  He asked me if I was "short of breath".  I told him that I didn't think so, but it made me hyper-aware of my activities and my breathing.  By mid-afternoon, I realized that I was short of breath.  A CT scan found a small pulmonary embolism, (PE), a blood clot in a lung artery.  Further testing found a deep vein thrombosis, (DVT), a blood clot in my calf, not uncommon is patients with decreased mobility.  The most common cause of a PE is when a portion of the DVT breaks off and makes it way to the lung artery.  My hopes of going home that day were dashed.  I was immediately placed on a continuous I.V. of a blood thinner for a few more days.

     By then, I was so sick and tired of being sick and tired.  My dear friend, Brigid, came to visit me and I announced, "You may not want to be here.  I'm cranky and bitchy.  I really need to get the hell outta here."  Brigid laughed and said, "I like seeing this."  That day, when each of my doctors came into my room, I asked the same question..."What do I need do to so you'll let me go home?"  I wrote down each goal and started the process of checking off the list.  Four days after discovering the PE, I went home.  It had been over a month since my initial surgery.  Being home has made a huge difference in my recovery.  I'm eating better, sleeping more soundly, and in general, am much happier.

     There is no doubt that I've gotten healthier and stronger since I've been home, but I'm not out of the woods yet.  I'll wrap this all up in Part 3.

  

[Photo: Copyright: <a href='https://www.123rf.com/profile_pakhnyushchyy'>pakhnyushchyy]

1 Year...

Time.
I've been told it would help...and it has.  The interesting thing about time, is almost every day it feels different.  Sometimes I feel like Ash was just here us, and other times I feel like it's been forever since we had her.  When I sit and think about the details of what occurred one year ago it still almost emotionally crumbles me...and then I sit with the pain for a few minutes, feel it and then move forward.  Anymore I don't even know if I would call what I feel pain...maybe it's actually Love.  A love that was taken, but still a love that is present and watching us.  I'm not sure how it all works, and how much influence Ash can have from where she is...but I feel she still has a hand in our lives, and I'd like to think a lot more than we actually realize.

I like to think that all the little Angels that have fallen into our life over the last year have been lead to us.  Each person has played such an important and amazing role in our lives.  Tender mercies that have been given to us.  From old friends and family that have held us up when we could hardly do it alone...to new friends that have shown up in just the right way at the right time.  People who have not passed judgement on what we were feeling or the way we were going about our life...

I have said that In the worse case scenario, I have the best case scenario.  My people, new or old, past or present have filled my life up with hope and happiness.

As you could imagine this week has been painful.  I have had many many conversations about Ashlee this week.  She was such a bright light to so many, and even in her death she has given a lot of blessings and friendships to others.  I do love that I can see her in my children, and her hand in my life.  The above picture is the lone palm tree that sits on Playa Hermosa Beach in Costa Rica.  It was right out front from this tree that we spread some of Ashlee's ashes in the Ocean.  Ashlee's tree is a marker for me, a place for me to come and connect to her.  I miss her.  so. much.  But healing is an interesting process, for me I feel my healing has been fast forwarded so much due to the experiences I feel Ashlee and God have given to me.  A gentle push in the right direction, a call from the right person, or meeting the right person at the right time.  I have found solid ground in those that care...maybe I'm crazy but I truly feel that none of the events have been by coincidence.



These three kids have probably handled life better then any of use.  Their depth, and wisdom is far beyond their years, it blows me away.  We talk about Ash all the time...we know that she is our guardian, and administering angel...watching over, and guiding us...She is and always will be such a blessing.

I know that Ashlee wants everyone to heal.  One year ago today I lost the person I loved most, the devastation was so thick and foggy it was hard to imagine being happy again or "healed."  Ash just wanted more time with us, and wanted to walk this road together.  Our journey changed in ways we both could have never imagined.  But she has helped us heal, pulled us through most of the fog, and is still along side us as we continue down this journey.  I will always love and miss Ash, we all will.  I think that time and experiences have allowed me to see that although she moved on from this life, we have not lost her.

The last words she muttered before leaving this world as she tried to look into my eyes was "I love you."  

Ashlee, I love you, this last year has been the hardest year of my life.  I feel like I have had to learn so many things, but I also feel the example you were to me taught and left me with the tools to be able to be the parent I need to be without.  I hope i and we are making you proud.  I miss you, and love you so so much and I am so grateful for who you were to me and to all that knew you.  So today we celebrate, love, cherish and think of you!!!

Complete.

Life moves forward, it won't wait for you...even when you really want things to stop.  In a lot of different ways it is a blessing and a curse.  As quickly as I have found myself in the darkest places, I have also found light, perspective, and love of all kinds.  The darkest days seem to have passed, that doesn't mean there are not difficult or sad days, but it does mean there has been a lot of healing.

As I finish this blog, I have to say a few things.  Ashlee and I specifically chose to be very open during this process, and taken many on this journey.  After she passed I chose to share detailed and intimate feelings and events.  By doing so I  know that I have opened the door to criticism.  For those of you that feel like I have shared too much, been too personal, and accounted too many details I hope you never have to go through what we have...and if you do, I truly hope you have as many people on your team as I have had...there is a lot of power in people, and although I did not get the outcome I desperately longed for, I know I was `carried by the many of you that cared for us.

Before leaving for Costa Rica I received a call out of the blue from Pres. Uchdorft.  He told me he was impressed to call me, and tell me that Ashlee's goal is that I am happy, and that my family is happy.  She will do everything she can to help, but there is only so much she can go from beyond the veil.  The timing of this message was perfect.  I have always known that is what she wants for us, but I needed to hear that again, especially that day.  I have also had other signs, feelings, and experiences confirming that.  I have found that choosing to be happy is a choice we do have...Our free agency is one of the most basic principles of life, however having the support of others can make that road to happiness a lot easier to walk.

The first things Ashlee asked me to do after she died was to take some of her ashes to Costa Rica and spread them into the Ocean...There was no timeline, but the trip just happened to fall on Fathers day about 3 1/2 months after she passed.  I had been counseled that Ashlee would be our leading Angel for awhile, and then she would become our guardian Angel.  I believed she has helped pull us through the fog of losing her in this life, and now is looking after us, pushing us forward, and doing all she can to help us be happy.

Sophie

Van

Finn

Audy

Getting closure is something I don't think I will ever look for.  Getting complete is what I have and am working on.  Over the last 2 years or so I have met a lot of people that have lost a husband or wife.  Every single one of them has their own story, experienced the loss, and tragedy in their own way.  Unknowingly, one of the many gifts Ashlee gave to me was the opportunity to have the time to say goodbye, to have nothing left unsaid, and to make our time count.  I feel like I am where I am because of who we were.  

I'm not sure why, but for most of my life I have wondered what people would say at my funeral, who would come, and if I made a good impact on people...I even remember being a little kid thinking about this.  After living through the death of Ashlee, and witnessing the aftermath I can confidently
say Ash lived an awesome life, and deeply touched a lot more people then I even realized.
By going through to terror of cancer, and then death she brought so many of us so much closer together...I find myself thanking her a lot.  The relationships I have have with "my people" are so much deeper, and richer.

In the last few years I have done a lot of things I never thought I would have to do.  Watching Ashlee die, and laying her body to rest at such a young age tops them all.  Fulfilling her wishes and taking her ashes to Costa Rica oddly brought me happiness...it gave me a purpose, and job that I could complete.  I was very emotional leading up to spreading her Ashes, but I remember feeling a sense of peace and love come over me while spreading her ashes into the ocean.  I smiled and felt good.  It was like I could feel her looking down on us with pride, and letting us know that she was happy we completed her wishes.

I've learned that no one is able to escape tragedy.  It is only a matter of time before it, in someway touches us again.  For some reason we are forced to witness or experience the hurt.  That being said I believe in a greater plan, and a bigger purpose.  I believe we are never alone, even when it is darkest...I still feel that life can and will continue to be beautiful, I've just been forced to look at it differently.  I think Ashlee has and will continue to help us see that everyday!

Lessons we just don't want to learn

As life comes at us, we are given lessons that sometimes we just don't want to learn...I now have a long list of lessons I have learned in a short amount of time.   I know as time moves forward I will have a lot more to add to that list...most of which I really never wanted to learn.  But here I am...and here we are...most of us don't even know where here is...or what moving forward looks like.

For better or worse Ashlee's last 17 months of life, and the 2 months since she moved on have blessed me and many of us with with gifts, experiences and opportunities we otherwise would not have been able to have.  Her death and everything around it created an environment that I have never seen before.  I'll start with the last few days for her life.

The anxiety and fear of death slowly faded.  When I asked her about it, she said she was mostly just sad.  She was sad she had to leave, we knew at that point she was close, and there was nothing we could do to stop it or even slow it down.   The grace that she maintained leading up to her death was remarkable.

Ash didn't want to be left alone, so if I had to leave or take care of something her brother, sisters, parents, in-laws, or friends would step in and lay with her.  We usually had 5-6 people all lounging on my bed just talking about memories, laughing, crying, and enjoying the fading minutes with Ash.  She wasn't able to communicate too much, but occasionally chime in with funny comment.

On March 12th we knew Ashlee was going to move on.  We had a full house, and as the night was winding down I brought Finn and Sophie upstairs and told them individually that "we need to say goodnight and goodbye to Mom because she is going to go to Heaven tonight."  I laid each child down on their mom.  Sophie fell asleep with her head on Ashlee's chest listening to her heart beat, and Finn was cuddled up under her arm.  We slowly took them upstairs and tucked them in, knowing that their worlds would forever be changed when then awoke.

As things progressed we knew we were getting close.  Everyone was huddled around, and I felt I needed to play the Conversation Pres Uchdorft had with Ashlee a few weeks prior.  As I mentioned in my funeral talk He talked to her about being accompanied by Angels.  Everyone in that room will tell you the spirit that was felt at that time was nothing like any of us had felt before.

Finally about 11:30 Van fell asleep on me as we all laid in the bed.  Ashlee's sister Sunni had her hand on Ash taking her pulse.  I sat up and looked at Ash, I told her I was going to tuck Van into bed, and that she better not go anywhere without me.  I walked out my room, went upstairs and put my little guy to bed.  As I got back downstairs, I was able to look into Ashlee's eyes, and hold her.  She tried so hard to mumble "I love you" and then she passed away in my arms.  Ashlee was waiting until all her babies were safe, sound, and asleep before she would move on.   I then asked everyone to leave so I could talk to her alone one last time.  I took her lifeless arms and wrapped them around my neck, and talked to her for awhile.  My heart was so full, so grateful she was free, and so proud of the life she lived.

I am so proud of her.  She did it, she completed her mortal journey.  She suffered more than anyone I have known, but did it in such a way that inspired, touched and taught so many.  After she passed, Her mom and sisters did her hair again, and got her all ready.  She told me a week or so before she died that she didnt want anyone to carry her out of the house except me.  So when it was time I wrapped her in a white sheet and carried her out.  I remember at about 3am putting her in the vehicle and watching them drive away.  It was a cold, crystal clear night.  I remember staring into the starry nights sky thinking of the reunion she must have been experiencing.  I remember looking up and telling the heavens how proud of her I was...I could feel joy, sadness, shock, and numbness.

The love between a husband and wife is unique to that marriage.  We love our children, family and friends...but the love we all felt that night and the days leading up to Ash passing on was the first time I felt the perfect love of Christ.  I can't explain it, but I remember talking to Ashlee's brother later telling him that those precious days were truly awesome...which sounds horrible because of the circumstances, but for those who were there understand how I could say that.  We were promised that angles would accompany us and Ash...at the time I don't think we could recognize that as we were so present to Ash, but now looking back at what we felt and the things that were going on, there is no doubt there was a lot more going on then we could see.

Her legacy and light will always live in those of us she touched.  As much as I wish I could go back, the reality of life has set in...The first few weeks after Ash passed there was a certain amount of joy we all held on to.  To know she is in a better place, not suffering helped me feel ok about it.  Then the memories of the suffering fade, and we are left with the good memories.  Those good memories make things a little harder because we can remember the best parts of Ash...then realize that we can't get her back...So in someways it's harder now then right after.

I think that there is a lot in life we have, but there is literally no way to know we have it until it is gone.  The calming peace that a good marriage can provide is something so simple that you don't even know how deep it runs.   I am a happy person, I find happiness everyday, and see beauty all around me...but I am not at peace.  There is an underlying uneasiness that has settled in since the shock has worn off.  It's hard to explain with words...I have been told that will change, and I look forward to that.

Ashlee was always concerned about me and the kids.  When she spoke with Pres. Uchdorft her one request was that He check in on us.  He promised to do so, and about a month after she passed, He showed up on our door step.  He offered tender and hopeful counsel to me.

I don't think I will ever fully understand the amount of blessings we have received during Ashlee's battle with Cancer.  So many wonderful things happened as a result of Ashlee carrying such a heavy burden.  I have never felt so much love from my community, strangers, family and friends.  People showed up in a way that I don't even think they knew they could.  We didn't get the result we so desperately hoped for...but I do believe that we are better people for having known Ashlee.