Sunday, November 23, 2014

Catching Up This Blog to the Present...Almost.

Okay, so this is not an OFFICIAL blog post update.  What I'm doing here is sharing the updates I had posted on our fundraising site since the SPOCK post.  I just don't want to lose the continuity in my own family blog since I'd focused on the YouCaring site for updates the last couple of months.  I will be refocusing all my future efforts in blogging back to THIS blog...starting NOW!  :-)

The only update I have is this:  THE SECOND MONTH IS HARDER THAN THE FIRST.  More on grief, life, hope, love, family, faith, etc as soon as I'm able to muster up a blog post!


Posted on 10/27/2014 by Organizer Heidi Owen & Melissa Abel
For anyone who does not know, my husband, Mark, passed away on October 8th, 2 and a half weeks ago...seems like yesterday and like an eternity.  We had a beautiful memorial on October 17th, which unfortunately was also my son's 12th birthday, and then we had a private graveside service with military honors on the 18th.  It was all very beautiful and very honoring of Mark's life.  But now, all of that is over and all the family has returned to their own homes.  My Mom had been here for over a month, helping us.  I don't know what I would have done without her.  I was able to be with Mark as much as possible and for the last two days and nights of his life.  The day before he died he said to me, "I'm leaving.  You need to let me go." Hardest words EVER.  I was alone with him for the last few hours of his life and his last breaths.  I was with him when his spirit departed and he joined Jesus in heaven.  It was the hardest thing I've ever done and maybe the bravest as well.  I prayed over him, read scripture to him, released him in LOVE and told him what an amazing father and husband and MAN he'd been.  I promised him I'd be brave and that we'd be okay. I'm really trying.  I'm not gonna lie...this is hard.  As the reality sets in that he's never coming back...never walking through the door again, never driving up in his little truck after work again, all those things that our life revolved around...never to be again.  I have to walk through this and help my children walk through this.  It's a lonely path. I'm still journaling regularly.  I'm asking the Lord for help throughout the day OFTEN.  I feel a little (or a lot) lost.  Just be praying that the Lord will guide us on our new path because I don't know what to do.  I'm just trusting that He has a plan.

Here's the obituary link:!/Obituary

Please pray for our health here.  Avi had to go to the doctor yesterday AM for fever and tissue swelling around her rt eye.  It was like a golfball was in there. She's on antibiotics for cellulitis but it's not looking significantly better today and her fever was up.  SO...PRAYERS definitely appreciated on that front as well.

That is all I can muster for an update for now.

THANK YOU ALL for the love, prayers, & support you've provided for us during this tragic time in our lives.  It really has made a huge difference.  We are very very thankful and words are not adequate to express how much!  I hope to be able to send thank you cards to each one who has supported us in any way.  I'll work on that soon.  Gratefulness and expressing it should be a very healing thing for me to be working on in the months to come.  I just need to keep focusing on all the blessings in our lives...there are MANY!

Posted on 10/07/2014 by Organizer Heidi Owen & Melissa Abel
Kimberly here again...writing from Hospice House as I sit beside Mark...

'Twas a peaceful night in the HH with Mark.  Yesterday I got a call that he was in decline.  And he was/is.  BUT, his his bladder was not draining into the cath despite several attempts at flushing and installing new ones.  He was very uncomfortable yesterday regarding this, obviously, when he was awake he'd say he had to go pee...but of course it wasn't happening.  I prayed and I know scores of my friends & family were praying and low and behold, after a whole day with no output it started flowing sometime after 8pm when I'd gone home to get my night gear for sleeping over.

Yesterday was was one of the most difficult days because when the nurse called me and said he was in decline I rushed up here.  I was unprepared for his condition of extreme discomfort & apnea that lasted so long that I would hold my own breath until he started breathing again.  The RN said it could be very soon or go on a few days before the end...obviously no one can predict our last moments.  I decided to have the kids come up and say their goodbyes and offer their loves one last time, just in case.  This was the hardest part of all.  Our sweet children having to say goodbye to their papa bear!

They were here about an hour then my Mom came and got them.  I'm so grateful she's here.  I wouldn't trust their spiritual and emotional needs at this time with anyone else.  I can't imagine doing this without her here.  Thank you Mama!

Please continue to pray for comfort and peace!  I pray that this part will not be prolonged & that Jesus will take him home soon.  If he isn't to be healed and home with his family I want him healed & home in heaven!
**********     **********    **********
Doctor JUST left after his morning visit.  Said Mark has had some big changes in the last couple days but said there's no predicting any of this. He may continue to quickly decline or he may bounce back and yo yo for a while.  No way to know.  So I'll stay by his side as much as possible and be here for him so he's not alone.

And that's where we are at today.

Posted on 09/26/2014 by Organizer Heidi Owen & Melissa Abel
Kimberly here.

It's been an extremely emotional week (...or year).  Mark is still in Hospice House, where they are taking really good care of him.  There was some concern (& drama) that I'd have to move him after the 5 days but the doctor changed his status and is allowing him stay there until he's stabilized or until he goes to be with Jesus.  It was pretty stressful for a couple of days...trying to find placement for a guy that's his age and in the condition he's in.  The doctor assured me today that I don't need to worry at this point about moving him elsewhere. It was such a relief to me to hear that from him.  The Hospice House is such a lovely place and the staff are incredible.  If he can't be at HOME, then this is the best place for him.  He definitely needs the care he's receiving there.

They are still working on getting his pain managed.  Mark has been having some delusional thoughts and I chalked it up to the drugs but asked the doctor about that this morning and the doctor suggested that some of what he's going through, mentally, is disease progression most likely and not just the medications.  He said it's common in metastatic cancer patients.  To be honest, some times he says some pretty funny things.  And he KNOWS they're bizarre things to say.  The other day we went in and he was totally lucid and it was such a GIFT for Azriel and I to spend time with the man we know and love.  He was able to appreciate an arduino project gift that Azriel had made for him and that meant so much to Az.  It was wonderful.

I'll write more later.  Heading up there with Liberty.  He likes to see the kids one at a time.  Yesterday he didn't want any visits so he could sleep the day away.

Until next time...

Posted on 09/19/2014 by Organizer Heidi Owen & Melissa Abel
Kimberly here.  A way overdo update:

So much has been happening that I have not had time to update properly but even if I had...I would have had to do it daily to keep all up to speed and I haven't the spare energy for that.

Mark is now in HOSPICE HOUSE for 5 nights.  We signed up for hospice a little over a week ago and with that came a lot of relief that we would have someone to call when/if we needed to.  However, Mark seemed to go downhill very quickly and yesterday he hurt his back.  He's had a hospital bed and a walker.  Yesterday I helped him get his first bath in 5 days...but later on in the morning when he was repositioning in the hospital bed he hurt his back.  After that he couldn't move at all...even to get comfortable because the pain was too great.  That's saying a lot considering all the pain medications that he is on.

Anyhow, he requested yesterday that he be moved into a full care facility for now and it was a grueling and emotional day for ALL of us.  So many things to figure out and so much to do.  It's downright overwhelming and there is no option to say that you just don't feel like dealing with this today. I would love for all of us to have a break but this breaks for no one.  UGH!

Last night I prayed and asked the Lord for a miracle...that a bed at the hospice house would open up so we'd have time to make decisions without haste.  There, apparently, is a large waiting list for respite care from Hospice House but they called me first thing this morning and told me that they had an open bed for Mark if we wanted it.  
PRAYER ANSWERED!!!  Mark was so relieved.  So am I.  It's hard not having him here at home.  It's especially hard on the children.  Even though he's been sick in bed for so long, he was home.  And that lended some normalcy to our lives...Papa was IN THE HOUSE. Now he's not.  :-(

It was especially hard for the kids when the ambulance came and took him out on a stretcher.

Mark seems very comfortable there.  He is getting the support he needs since they have the equipment and staff to meet those needs.

Hard times.  Prayerful times.  Sleepless times.  Crying times.  Hoping times.  Loving times.  ONE STEP at a TIME times.

We are trying to keep GOD at the center of this storm.  He is our hope.  He is our ANCHOR.

More when I have time.  

Posted on 09/06/2014 by Organizer Heidi Owen & Melissa Abel
Kimberly here...
Here's where we are at:
After meeting with Mark's oncology ARNP last week by MYSELF (Mark was too much in pain to tolerate the drive to the appt.), we got a referral to hospice.  It was funny because when I showed up at his appointment FOR him, they didn't quite know what to do with me.  I don't think that happens often.  BUT I had pretty well had it with the lack of care and response we've gotten from our medical community.  I'm not dogging on the individual providers, as they are all quite lovely people, but there is a TOTAL FAIL in their system when it comes to responsiveness and Mark has fallen through the cracks over and over again...calling for help with his pain management and never getting anywhere.  So, I went in and I tried to get through the appointment without breaking down, but I couldn't make it.  I the office.  I was just so frustrated and I have felt that we've been really just left out here on our own without any support or network of how to deal with the things that have come up, like the pain.  When we have gone to the ER because we couldn't get help from the doctors or it was a weekend, they didn't know what to do with him.  They really don't want to touch him with a 10 foot pole, or so it seems. 
So we'd gotten a primary care physician who is a personal friend and colleague of our oncologist, and wonderfully just down the street from us. HOWEVER, he doesn't return calls.  He's a nice guy, we like him, but he does not return calls. 
 Blah blah blah.  I'm going in circles here.  The point is, we've felt that we haven't had the responsiveness that we need from our medical team.  I don't feel they are even a team.  It's all segmented. 
This post wasn't meant to be a complaining post.  I'm sorry.  The point was that I went in and requested a referral for hospice care.  She agreed that that was a good path for us at this time since Mark decided against any more treatments.  Not that they had anything with any hope to offer.  They didn't. 
The intake nurse from hospice came out to our home the next day.  We are very much ready to get the kind of care they offer and their care goals are what we have been desiring for the last month.  However, once you join hospice you cannot do any diagnostic testing at all. 
We decided to not sign immediately, as Mark had a couple diagnostic tests he was still considering.  One is the nerve conduction test and the other a CT scan of his shoulder that his radiologist suggested.  He said there is a SMALL possibility that his arm pain could be caused by a tumor that was growing on the mass of nerves that are in the shoulder area.  IF that is the case, he could do some radiation on it and it would relieve the area possibly of pain.  So, he's considering that because if he could get rid of the pain without DRUGS he'd rather do that.  Of course!  Who wouldn't, right? 
The nerve conduction test would be done through his neurologist.  The referral for that went in over a week ago and no calls for an appointment.  Mark spent much time on hold calling them yesterday and finally left a message.  A human eventually called and said they couldn't fit him in until NOVEMBER.  Seriously?  Is there no consideration to put a terminal patient at the front of the line????????  This is the type of thing that is KILLING me about our medical system.  It's unfathomable to me that they can't put him in front of some other TODAY.  He explained his situation and prognosis and NO DICE!  They aren't going to see him earlier than November. 
We also don't have an appt for the CT yet...after he called them yesterday.  Can these places all be that busy that they can't fit a guy in who needs the diagnostics like YESTERDAY??? 
UGH.  It's more than I can bear to even think about the idiocy of it all.  Total fail of the system in my eyes.

Anyhow, Mark decided that the nerve conduction in November isn't worth waiting on.  He does want to get the CT, so we'll do that and see what they can find in there, if anything.  The radiologist did an exam and thought he'd be able to feel a tumor there if there was one and he did say this CT is a shot in the dark...a small chance.  But, we'll take it.  THEN we'll go on hospice care.
After his appointment with the radiologist on Thursday we went to his primary care doctor's office.  The radiologist would not change his pain medications.  That was one of our goals while we were there.  The hospice nurse wrote down her suggestions for what he should be on but the radiologist didn't feel comfortable putting his name on a prescription for that.  I suppose that's understandable since pain management is not his area of expertise. 
Mark's primary was not in but we got in to see his partner.  She was wonderful.  She gave us exactly what we runaround, nothing.  First time in a while I've felt like someone treated this situation in the proper manner.  I got the prescription filled for MS Contin (Morphine) and for the first time in a month, Mark is comfortable and has been able to sleep.  He still feels the pain but it's not all consuming like before.  It is such a blessing that he can get some really restful and deep sleep. 
End of our saga for this update today.  Thank you for letting me share my frustrations with you all.  I just wish there was a system in place here for continuity of care and case management for situations like ours.