The New Normal... (and more of a glimpse into my thoughts than you might want to know)

I wrote all this two weeks ago, but got interrupted before I could post it.  Then life got busy, and I either forgot or didn't have time to reread the whole thing for typos.  I found the time this morning!  Yea me!! :)


Life has finally calmed down a bit.  At least as much as can be expected.  All the extra people staying here have left and it's just us again.  I haven't had to run a house or be the only caretaker of the kids in so long, it's a bit of an adjustment.  Although, at the same time, the last time I was on my own with just the family I also had to deal with the new Mark, and he was a handful.  In a way this is much easier.  Less doctors/therapy appointments, less drama with meds, less worrying about how/what Mark was doing if he wasn't nearby, less feeling bad that I wan't doing very well with keeping him working on his therapy.  More time at home, more energy to devote to the kids, more consistency.

For all the extra drama that Mark's tumor caused, he was still helpful in his own way.  He still took out the trash (if I reminded him), he still cooked quite a bit (although the end result was going downhill towards the end), he was still willing to listen to me when I needed to talk (although his ability to respond intelligently was becoming less frequent - and I needed more patience to wait for the response), he still cared about how the kids were doing (although I often had to point out both the good and the bad about what was going on in their lives), he was willing to help unload groceries from the car (even if it took him a rather long time).  It will be more of an adjustment to get used to doing those things on my own (mostly the trash part - I haven't taken out the trash in years!) :)

I will always be grateful for those last few months I had with him.  Mark had been given blessings that gave us hope.  It was that hope that allowed me to enjoy him despite the fact that the man I married never made it out of the operating room (and in fact had been disappearing for some months previous to the surgery - although I didn't recognize at the time that that was the problem).  Even a week after surgery, while recalling one particular blessing, I said then that even if none of the specifics came to pass, the blessing has already been fulfilled.  I was able to face the cancer with calmness and rather than worry about what might/might not happen in the future, I was able to enjoy the present.  I was able to let go of things that I had no control over anyway - the cancer - and control the only thing I really had any control over in the first place - my attitude.  Before the blessing I had been worried and stressed and unable to see straight through the devastation.  After the blessing I was able to put much of my worry into the Lord's hands and let him take over my life.

I've always heard of people doing that but, to tell you the truth, it never made sense to me (in fact it wasn't until I typed that out right now that I actually made the connection).  Being married to Mark helped me understand that.  There were parts of life that were just stressful to me to be in charge of.  Mark allowed me to hand those things over to him.  That didn't mean I stopped working on it, but Mark was willing to be responsible, which meant I didn't have to be, and that made a huge difference to my ability to enjoy those stressful tasks - and oddly enough, my ability to do them.  I was able to do much the same thing with the Lord and Mark's cancer.  I put the Lord in charge and that left me able to do my part without being responsible for the outcome.

When I was trying to take responsibility for the tumor, life was stressful - especially since there is really nothing that I could have done about it.  Once I let the Lord be responsible for that part, while still doing all I could, I was able to spend my time with Mark enjoying the new Mark, rather than spending time researching all of the things I should be doing to help him.  I did what the doctors recommended, and brought up concerns and asked a million questions, but at the end of the day, I was able to just follow the doctors' advice and enjoy life.  I have no idea if we could have done anything differently to save Mark, and honestly I don't want to know.  I have no regrets.  I made the best of a shitty crappy situation and that's all that really matters to me.  It's possible that there exists something out there that might have kept him around a bit longer, but if it would have cost me my ability to enjoy these last few months, then it would not have been worth it (and Mark would have agreed - in fact at one point I asked him if he wanted me to look into other treatment options, but it might involve moving to another state.  He said no.  The kids needed stability.  I even laid it out plain and simple (his brain worked better in plain and simple at that point).  He was choosing to stay in UT and die, rather than move out of state and maybe live.  His response: 'Yes. I am choosing to stay in UT and die').  I am glad we spent our time enjoying each other.  In the end our focus was quality of life, not quantity, and for us, that was the right choice.

I am grateful for the opportunity I had to say goodbye.  I know everyone doesn't get that chance and I feel so blessed to have been able to have that time.  It was a hard goodbye, and it took me many months to be able to say it, but those last few months were so hard on me - physically, mentally, emotionally - that by the time the end came, I was ready.  Perhaps more ready than most.  While there was still a little bit of the old Mark to enjoy, it was becoming less and less visible, but the work involved with caring for him was becoming more and more daunting.  I was willing to do anything, and I mean anything, for him - he was worth it and I would do it again in a heartbeat - but I confess to being somewhat grateful that I no longer need to worry about him in this life.  If I could have kept the man I married, I would have been the happiest person on the planet (before the tumor we often remarked on how much happier we were than we could even imagine other couples being - we hoped, for their sake, but it was hard to imagine others being happier than (or even as happy as) we were) I even would have been willing to keep the 'new Mark', but it would have been a hard life.  A very hard life.  Once it became obvious that the man I married - or even any version of him - was no longer able to be a part of our lives, his death was a blessing, and I'm grateful it came relatively quickly.


---This part I added today.

Our new life will also be hard, but I see more hope now than I was able to before.  I probably have less energy overall at the moment, but I have been able to give so much more of that energy to the kids and the house than I have been able to in a long time - it feels like I have more energy, even though I'm often tired during the day.  I actually play with the kids again!  I've cooked more in the last week or two than I have in the last 5 months.  I've put more effort into keeping the house picked up than I have in a long time too (there's quite a few disaster areas from re-organizing the house, and Mark's stuff hasn't been dealt with yet, but I have done better at keeping the frequently used areas tidied - that's a plus!).  I've decided to just enjoy the kids, have fun watching the olympics, not feel bad that I often need naps (I am still recovering from having a baby after all...), and put off worrying about the 'disaster areas' of the house until I either find the energy, or they drive me nuts! (I would say 'which ever comes first', but lets be honest - it will be which ever comes last... :) )

We are moving on, one day/week at a time.  Although I find myself able to lift my head a bit and look to the future, which I didn't notice I was missing until I did it, and the future holds hope! (and fears, of course, but lets just focus on the hope for now!)

Mark has gone Home

I'm sure almost everyone has heard by now.  Mark passed away Friday afternoon, peacefully at home in his own bedroom, surrounded by people who loved him.  I will forever be grateful for the last few months we got to spend with him before the cancer took him from us.  He always enjoyed life, even as it got harder for him near the end, and I am glad we got the chance to make lots of memories with him.

The funeral will be on Saturday the 25th at 11:00am, with a viewing before starting at 9:30, at the LDS church he grew up going to and went to most of his adult life (1700 N Geneva Rd, Provo).  I think he will be glad to get to go back there one last time.  There will also be a viewing the night before at Berg's Mortuary on Center Street in Provo from 6-8pm.

Hospice

It's time.

We have put Mark on hospice and will bring him home in the morning.  He hasn't really woken up since late last week (or really hardly at all since surgery right after Christmas).  He has stopped eating and drinking and it's only a matter of time at this point.

If anyone wants to come visit, he'll be home soon.  We welcome visitors, but just be warned that Mark most likely won't be able to communicate with you.

I just want to say a great huge THANK YOU! to everyone who has been so supportive through all of this!  I wish I had the energy to thank everyone individually.  I've really appreciated all the e-mails, Facebook notes, texts, phone calls, gifts, acts of service, visits, prayers, comments, all of it!  I haven't always been good about taking the time to respond to each individual note/e-mail/text/gift (nor have I always known who they were from), but they were all received and are all appreciated. Thank you!

The Rehab Center

Mark came out of surgery well. He spent a week in the hospital and then they transferred him to Orem Rehab. He managed to arrive at a rather bad time, spent the weekend not in the system, missed therapy over the weekend, and we had to request several of his meals. Once Monday came around and he was in the computer, life got better.

He's been doing physical therapy almost daily and he finally got his first occupational therapy on Friday. Speech has been super consistent about coming in (turns out she's a third cousin on my dad's side and grew up next to the Sundels up the meadow - random!), and he's been super consistent about being hard to wake up when she's there.  Although, he's been hard to wake up most of the time...

I wish I could say he's been doing better. We keep seeing small improvements, but if I try to be objective, he's not really making any great strides. He's actually gone backward quite a bit, even since coming here. He got a UTI, had some dehydration issues, and has been in bed so long that he has lost a lot of strength. He's hard to wake up for therapy. He says he wants to do it (by a really slight nod), and then has a super hard time waking up to do anything.  Even eating is hard for him to wake up to do.  He's the most awake while eating, but even that is borderline 'wakefulness.'

We had an appointment with his oncologist last Monday and he said that treatment while the patient isn't doing well physically is actually detrimental, so he doesn't recommend treatment until (if) Mark starts doing much better.

An MRI is only mostly useful. It will definitely show if things are worse, but if things are better or neutral it's hard to guess what makes it look better. MRIs show swelling and the avastin is great at brain swelling, so a good MRI could just be less swelling, or it could be the tumor doing well - it's likely to be a guessing game. But since we won't treat Mark unless he's doing better, they won't bother giving him an MRI until there's a reason to see how treatment is going.

So that's where we are. Mark got some IV fluids last night, but once the bag ran out they unhooked it.  They're keeping a closer eye on his output to see if needs more. He is still on a two person transfer from bed to his wheelchair, and his left arm/side is basically useless (flaccid?). His food comes puréed, but at least that way he gets more down him. If he's in his wheelchair, we have to hold his head up for him while we feed him, and then put it back down for him to drink so he doesn't cough on his water...  Just in case you were wondering, heads are heavy! :)

I have asked him a few times over the last couple of weeks if he wants to fight this, or if he's ready to be done and come home (to go Home...), and, while his answer is getting weaker, it has stayed the same.  He wants to keep fighting.  So, we're going to help him fight - in whatever way we can, and whatever that means - for as long as he still wants to fight.  

If someone tells you their gallbladder burst, they're lying

At least those were the exact words of the surgeon when he came out to report on Mark's surgery.  Those words were followed by 'Mark's burst.'

Let's start at the beginning shall we?

We had a good Christmas.  My awesome Cousin Laurie came to visit for the weekend and we had a good time just visiting.  On her last day here a group of us drove up to Salt Lake to eat at Cheesecake Factory.  Mark came with us.  It was his first real outing for a while, so it was good for him to get out of the house.  He was in the wheelchair the whole time, just because he's been getting less and less mobile recently, but he was glad to get out.  That evening we went and saw The Hobbit, and again Mark came with us.  We had a hard time getting him up the stairs to his seat, but once there we all enjoyed the movie.

The next day was Christmas Eve and his mom's family had a traditional get together for the afternoon that Mark was able to make it to.  He used the walker to get in the building, sat in a comfy chair (rather than a metal folding chair) and managed to stay awake for the food but nodded off towards the end.  He missed the kids acting out the Nativity (Shelly was Mary and Nikki was Jesus, Emily was asleep and Jason didn't want to participate...).  He woke up at the end when the Santa gifts were handed out.  We got the wheelchair out to get him back to the car though.  He wasn't up for walking anymore.

The next morning was Christmas!  I woke him up and got him into a wheelchair so he could come be part of Christmas.  He was reluctantly willing to be woken up so early, but he was a good sport about it.  We had so many gifts!  It got a bit crazy and presents were being ignored, so we took a few breaks in the gift opening process to be able to enjoy the ones we had already opened.  We finally got to the last round at 2:00...  The last several years we have had a rather modest Christmas (a thrift store gift from us and a few dollar store things to make up some numbers, and then whatever Grandma got).  This year was a veritable feast!  The kids got so much stuff!

While I am grateful for the 'stuff,' I am far more touched by the sentiment behind the 'stuff.'  The vast majority of our gifts were some form of anonymous. Either the people giving them didn't know us (we had someone contact us about a Sub for Santa), or we had no idea who had given them to us (we had a quite a few gifts left on our doorstep, or dropped off by people who claimed not to be the giver).  The outpouring of love and consideration of us was super awesome to witness!  Through all of this I have never felt like I was facing it alone, and Christmas was just another reminder of the amazing people who are out there thinking of us!  Thank you.

That evening was another party - this time for Mark's dad's family.  Mark again made it into the building with a walker and needed a wheelchair to get out.  He managed to stay awake for most of that one though.  I think it was the food he was munching on the whole time...  :)

So, the next morning....

Mark woke up early, especially for him.  He has been sleeping rather a lot the last couple of weeks, so when he woke up at 6am and wanted to get out of bed, I was a bit surprised.  We spent the next couple of hours trying to get Mark comfortable.  He went from the bed, to the couch, to the other couch, sitting up on the couch, lying down on the couch, to a chair, back to the couch, back to bed, from one side of the bed to the middle of the bed, to the other side of the bed (blankets all tangled up around him and pillows all over the floor), trying to get out of bed on his own (he hasn't been able to do that for over a week), to the bathroom, back to the couch, to the egg chair, to another chair, to the egg chair cushion on the floor, and on and on like that for hours!

The last time he was like that was in the hospital back in Oct, and we thought it was the meds.  I realized then that I can handle him like that for a little bit, but it is so tiring that it takes too much out of me and I get grumpy with him really quickly, especially when I have other people (like 5 little kids) needing my attention.  So, in an effort to save Mark from, well ...me... I left him in the care of others while I went to Michaels with several family members to take advantage of an awesome coupon (40% entire purchase!).  While we were gone I got a call asking where his stomach meds were (he's takes Zantac while he's on steroids).  That was the first I knew of him having pain in his stomach.

When we got back, we decided to go to a family get together for my dad's side of the family.  The party was over 30 minutes away and we debated wether we should leave with Mark doing so poorly.  Finally I gave him an extra dose of steroids (just in case it was brain swelling causing his discomfort), decided that if he wasn't better by the time we got back we'd take him to the hospital, and then left.  Mark's parents were there with Mark and there were at least two adults with the kids, so we knew he was in capable hands. 

While we were there we got a text from home saying that Mark was on the way to the ER.  Turns out Mark was occasionally having a hard time breathing and they finally decided it was worth having him checked out.

We left the party and headed back to the hospital.  The whole time we were waiting for test results we sat there wondering if we were over reacting.  Mark seemed to have so few obvious symptoms, occasionally complained of pain, randomly had a hard time breathing, he was mostly just restless.  It seemed hard to justify a trip to the ER...

Then the test results came back.  His gallbladder was inflamed and would need to come out.  Soon.  As in right now.  The ER doc gave the surgeon two gallbladder patients at the same time.  The surgeon opted to do the easy surgery first.  Apparently having a brain tumor and being on a medication that recommends no surgery for 4 weeks before and after treatment complicates surgery...  Who knew?  That and his gallbladder was much worse and had more potential for complications.

So Mark waited the hour or so it took for the other surgery to finish and then headed back to surgery himself.  I was with him in holding and he was fine at first, but towards the end of his wait he had an attack that made it really hard to breathe and he was very anxious and very uncomfortable.  His voice had a total change, his eyes were all wrong (glossy, unfocusing, almost rolling back into the top of his head), and he was trying everything he could think of to find a position that would allow him to get a breath (most of the things he could think of were not exactly safe or smart for how poorly he was feeling).

I was glad to see him wheeled back, because it meant that he would be asleep soon and out of pain.

We waited for almost 2 hours.  When the surgeon finally came out his first words were 'Mark is doing fine.'  Followed by the incredible 'I've done ten thousand of these, and I can count on my fingers, of just one hand, how many burst gallbladders I've seen.  If someone tells you their gallbladder burst, they're lying.  Mark's burst.'  He then described the puss and how it was spreading all over and other gross stuff.

The surgeon cleaned him out and put in a drain so they could keep an eye on how his insides were doing, and make sure there was no infection left.  He said that even without the brain complications this surgery would be a 4-5 day hospital stay, so he said we should expect him to spend something close to a week in here.  Gallbladder removals are typically same day surgery...  

We asked the surgeon how long he had to have had this (since we didn't even know Mark was having stomach pain until a few hours before surgery), and the doc said it had to have been inflamed and irritated for weeks and had probably been burst for a day or two.  We. had. no. idea.  None.  We actually were wondering if we were even justified in taking him to the ER.  

Mark is more than able to tell us when he's in pain, he just didn't.  I'm not sure if he didn't know he was in pain, or if he thought it was minor and would just go away on it's own and didn't mention it.  But I'm pretty sure that a burst gallbladder should be painful.  Pretty sure...

Physical therapy got him out of bed yesterday.  With one person on each side of him, basically holding him up, he was able to stand up (or at least put some sort of weight on his legs), side step about 10 inches and sit back down.  Then when they asked if he wanted to get back in bed or stand back up, he opted for standing up again.  That's as much as he has been capable of so far, but he had rather a bit of pain meds in his system at the time.

So, now we have a waiting game.  It is totally possible, probable even, that his rapid decline of the past few weeks has been due to this inflammation and infection.  It's also possible that it is due to tumor regrowth.  We are hoping that we can blame the gallbladder for most of it and we can get him back functioning much more closely to normal.  If not...  well, we're trying not to think about that yet.  We are just sitting and watching.  He's been pretty much asleep since surgery.  He did have an 11 minute seizure as he was coming out of anesthesia, so that might be part of what's making him so tired.  Only time will tell at this point...

The Latest

I'm sitting with Mark while he's getting his second dose of Avastin.  The first dose was two weeks ago, and I noticed a rather good difference that same night.  He interacted with the kids more and just seemed to be doing better.

The baptism and blessing went well.  Mark had both his dad and mine in the font with him, and it was good that he had a bit of help.  Mark managed to get Shelly most of the way down but needed a bit of help getting her that last little bit of the way down.  He was slow getting dressed, but thankfully everyone there was understanding and patient.  And Nikki's blessing went well too, although Mark was a bit embarrassed that she was crying even though he was bouncing her.  :)  There were over 130 people there!  We both felt so loved and are grateful for all of you (even if you were only there in spirit)!

We've had family in town staying with us for the last week or two or three (depending on which family members we're talking about), so life has been full and I haven't found as much time for updating this as often as I should.  We are too busy talking, taking videos of Mark, playing games, making candy, etc...  When something bad happens I'll be sure to let everyone know, so for now, no news is good (or at least neutral) news.

Mark is largely doing ...not bad...  He is getting weaker, but we stopped his physical therapy last week and I think that's played a large part.  The therapists need to see progress in order to justify treating him, and his seizure set him back enough that they were having a hard time justifying his treatment on paper.

There is a maintenance program at the facility that sounds like it will be perfect for Mark.  It's the same workout, just with technicians instead of therapists.  There is no need to justify the treatment since it's not covered by insurance, and it is more predictable in when we can get appointments.  The problem is that they charge per calendar month, regardless of how much of it you use.  The original plan was to have him do his last few appointments with the therapists that took him almost into mid Dec, take a break for the holidays and pick up the maintenance program in Jan.

Mark has gone downhill enough physically in the last few days that we might need to rethink that.  He's been having a hard time getting himself out of bed.  Once he's sitting on the edge of the bed he can get himself around the house pretty well, but going from lying down to sitting up is hard for him.  He has also almost completely stopped using his left hand.  He has strength in it, he just stopped using it...

I'm tempted to go right now (while Mark is napping during his infusion) and set him up with appointments, but maybe we can do more at home than we have been for the next week and save us some money and be able to spend more time with family...  but on the other hand, he'll enjoy his family time more if he is more functional...  Decisions, decisions...

The doctors want to do one more round of treatment and then do an MRI to see where he's at.  Give the meds enough time to work, but also not wait so long we're treating it uselessly.

I think that's about all the news I have time for before his infusion is done.  When I know more or different, I'll let you know!

Help!

Mark needs your help.  We have had several impressions over the months that Mark will be healed and have a chance to raise his children.  We are not yet ready to give up on those promises, or assume they meant something other than he will raise them in this life.

We are hoping to get some help with fasting and faith from everyone who loves Mark.  Shelly is getting baptized on Tuesday at 6pm, we are blessing the baby at the same time, and afterwards we would like to have anyone who is willing to help give Mark a blessing.

If you are willing and able, we would love you to fast and pray with us either Sunday or Tuesday for this to work.  I know God has healed people with worse ailments and he is willing and able to preform such blessings, we just need to have, and exercise, the faith necessary.  And then sit back and let God's will be done.