What a week....

I'm not quite sure what to say about this week....it's been a pretty broad range of highs and lows.  I'm at a loss to remember all the things that happened this week because I KNOW it was full so I go and check the calendar on my phone and it's empty.....so much in five short days but no record of it.

Monday was great!  We had the unexpected surprise of Alex getting his PICC line out, which went really smoothly (but I videoed it on my phone just in case).  Alex had his bowling arm back - it's a banner day and one we've been waiting 5 months for.  But he has this annoying little rash on his neck and he has a weird bruise/sore on his ankle that just 'popped' up, so there's that to be concerned about and try to figure out.

On Tuesday we had an appointment with our Primary doctor's partner because both our Primary doctor and Alex's oncologist are on vacation this week (this was not coordinated with me, so I'm at loose ends trying to find someone I trust to take a look at Alex).  This doctor says one of my most dreaded phrases, "Let's just watch it"😳  Like I never 'watch' the stuff Alex has that comes up - I watch it like a hawk.

Wednesday Alex got to bowl for the first time in 5 months.  He was so happy and he bowled so well, 154 & 184; he hasn't lost his touch.  It also looks like he has a job at Rancho Bowl - his dream job!

Today we were going to put new flowers on Ian's grave for Easter.  We were at Ballard and I got a call.  Before I even saw who it was, something told me it was my dad.  My mom had become violently ill and he had called 911. We weren't sure what was going on but thought it might be one of her medications.  My mom has been in ill health for a very long time and was mostly confined to her home with arthritis and other ailments.  After my dad hung up with a promise from me that I would meet him at the hospital I had this weird feeling......I was looking at Ian's headstone and I just felt him letting me know that he knew and had his eye on his grandma.  So I silently said 'ok, Ian.....you got this".  On the way home we would find out that my mom may have had a stroke.  Once I arrived at the ER I found out that my mom wouldn't make it (it's usually not a good thing when your dad is waiting for you outside the hospital instead of being inside with his wife of almost 57 years).

My mom had suffered a massive stroke and she would not recover so the decision was made not to perform any heroic efforts and to keep her comfortable.  We knew this is what she would want.  The doctors told us that they agreed with our decision but we knew it was the only one to make; my mom would be so mad if she was confined to a rest-home or unable to function at all.  She would hate for people she didn't know to be taking care of her or to be more of a burden to me dad.  We were more afraid of her being mad, even if she couldn't talk she still had the power of the 'evil eye'.  An hour later she was gone.  She would have wanted to go quickly.  We prayed over her, talked to her, told her we love her, thanked her for being such a good grandma to Alex, Amy & Ian.  We wanted to play some hymns for her as we waited so I clicked on Pandora.  I kept trying to find hymns but the only song that would come up was "Good, Good Father."  I think that was a good choice as she went to be with the Savior she has loved most of her life.

I like to think that those we have loved in this life are there to greet us when we arrive in heaven and I can imagine mom gently pushing her siblings aside as she excitedly looks for Ian.  What a glorious Easter she will have this year with her parents, brothers and sisters and Ian.  She loved that boy. 

It's been a heck of a week.

Can you say R.E.M.I.S.S.I.O.N?

I woke up to a reminder on Facebook - "Blessing #17, an unsolicited hug" posted originally on March 19, 2011.  I know exactly what hug that was; where I was, what Ian said and the feel of his arms going around me.  What a great way to start today with a reminder of unsolicited love from Ian.

We got final results today and Alex is cancer-free!  Alex and I were both quietly happy at the news as we met with his oncologist, Dr. DiCarlo.  Alex is usually quiet in his responses; he thinks, he ponders then he questions. So I will wait and see what questions he comes up with in the days ahead.   He's also focused on the 'now'.  When I asked him if he was happy about the news, his response was "I'm still hungry."  That's my boy!  

For me, it's because I've been in this place before; thinking we had beat the cancer with Ian only to have it come back 'with nasty aggression' (Ian's words).  So, I will wait and watch and be quietly neurotic.  I also know that  now begins the dance of balancing his immunosupression and keeping the cancer at bay.

We are seeking opinions from Stanford and Loma Linda on how we should proceed.  There is talk of during a couple of rounds of Rituxan (a monoclonal antibody) to make sure we killed all the cellular traces of cancer that a scan can't pick up.  There's the question of whether it would be beneficial or may be more harmful down the road.  If we do this, then we stop his immunosuppression medication again...it's a highly choreographed, complex dance.... this life with Alex,  but worth every step.

I had something noteworthy happen lately....I got a Friend Request from a stranger on Facebook.  The request wasn't unusual, it happens and if I don't know them I usually ignore them.  But I saw that we had some mutual friends, one of them being my friend Melissa Haley who died much too soon a few years ago.  I thought, if she was a friend of Melissa's she can't be all bad.  I found out very quickly how much my new friend and I have in common.  She lost her son 14 months ago at the age of 22.  He was born with congenital heart problems which led to lung problems and needed a double lung and heart transplant but was unable to get one.  She has a Bakersfield connection.  We had both been previously divorced.  She's a Christian.  God speaks to her through songs as well.  I knew we needed to meet and talk, so we did and it was lovely.  She was needing to meet another mom who had lost a son and had walked where she is now.  I needed to share with her what I have learned and experienced so far on this journey and we both needed to talk about our boys.  God used our ties with Melissa to bring us together....I think Melissa would be smiling at that.

I can't see the line anymore.....

Alex's medical care has always been complicated.  I literally spent the entire morning on the phone with doctors offices, testing facilities and insurance companies.  Finding the right balance between keeping the cancer at bay and keeping him immunosuppressed so he doesn't reject his heart is precarious and we feel the weight of those decisions heavily.  But now we are walking such a thin line, I can't see it anymore. 

We have Alex's history of being off his heart meds for 7 weeks when he first dealt with cancer 18 years ago and never rejecting which gives us some reassurances but we can't let that make us complacent. He's been off chemo meds since January and off his heart meds since November so we're at the 7 week mark now.  His transplant team is understandably concerned but we also have to make sure he's actually in remission before we start to suppress his immune system again.  This week, for the first time in 28 years, Alex had no medication of any kind to take; no heart medicine or antibiotics or diuretics or anti-virals or blood pressure medicine.....he was at a loss.  It is such a part of his normal routine he had to check with me several times to make sure he didn't have anything to take.

Some decisions were made today to try and safeguard him.  He'll have a PET scan on Thursday to check for any signs of cancer anywhere.  I'm particularly concerned about the lump in his neck so this will tell us if it's lymphoma or not.  Then on the 14th, he'll have a repeat bone marrow biopsy at Sierra Vista hospital just to make sure the first one was accurate and complete.  In the meantime, he'll start taking Prednisone (both a mild immunosuppressent  and chemo-type of drug).  He'll start a new immunosuppressent medicine on Tuesday as soon as it's delivered.  It also has some cancer fighting properties but all that could change depending on the results of his PET and biopsy.....it's seldom clear-cut for Alex and it constantly keeps me on my toes.

For those who ask what to pray for the list is long today:
     That his test results would show no cancer
     That he wouldn't have any adverse affects from the bone marrow biopsy (he got horribly sick the   last time he was sedated)
     That we would find the right balance between suppressing his immune system and fighting the cancer
     That he would not suffer any side effects of the new immunosuppressent medicine
     That my hair will stop falling out (if I leave a trail of grey hair where ever I go, I apologize in advance)
     That I won't let the fear win

Results are in

The results are in BUT......there's always a 'but' with Alex.  😌  First of all, the results are good (let's get that out of the way).  The reason it was taking so long was the doctor wasn't able to get a great core sample, which he was concerned about at the time of the biopsy.  Apparently Alex has some 'weird' anatomy in that area?  Who knew??  The pathologist was trying to work with what he had BUT the cytology of the blood showed no lymphoma.  This is obviously good news which we immediately celebrated with breakfast at IHOP.

The plan going ahead will be a PET scan next week to confirm there are no cancer cells lurking about.  Followed by another bone marrow biopsy, this time at French Hospital with a radiologist utilizing ultrasound to find the exact location of his bone marrow - that tricky little bugger.  Then we will see.......in the meantime we will continue to monitor his heart (this has been added to our nightly routine). 

We may be headed into some unknown territory again BUT Alex has been a trailblazer in medicine before.  We are questioning the transplant teams' desire to put Alex on two immunosuppressents, as is the normal adult protocol BUT we're not dealing with a normal adult heart transplant recipient. So, we will see if we forge a new path again.  The ones we've had to wade through in the past turned out to be beneficial to those following behind; we can only hope for that as we trudge ahead.  I don't relish this possible role BUT God as kept His promise to prepare Alex for everything that has been laid out before him.....He knew Alex's life plan way before we did....just wish we had a heads up sometimes.

I watched Billy Graham's Celebration of Life today (and that's exactly what it was - a celebration) and was reminded so much of my grandpa Sam who was a Southern Baptist preacher.  I think my granspas'  love for Jesus was similar to Mr. Graham and what I remember of his sermons were always centered around surrendering your life to Jesus.  He and my grandma weren't perfect people but their flaws made them human. It made their life of service to God attainable.  I heard the familiar hymns I grew up with and can sing from memory and I was reminded of the simplicity of the gospel.  Sometimes we make it so hard and I don't think that's what God intended.  It's hard enough for us to relinquish control....why would He make it harder?

On a slightly different note (excuse the pun) - I put a lot of stock in God speaking to me through songs.  I think there are a myraid of ways He can communicate with us and one of those, for me, has been through songs.  There was one song in particular, Even If  by Mercy Me; every time I heard that on the radio (usually as a I was driving to an appointment with Alex) I would tense up.  Over time it worked into anger and admitting I'm not there, I can't say 'even if'.....but today, not so much.  More a realization that a lot of my life IS that song.  Don't get me wrong, I'm still not there.  I'm still afraid of the possibilities and my reaction but I also see God providing a path and that's more than I had a month ago.