Coordination Takes Skill

So, it looks like David will be getting a port on monday.  A PowerPort to be specific.  Fits well with his tech interests, he wanted to know what he could power with it... *eyeroll*  hehe

They said it's a fairly minor procedure but I'll tell ya, coordinating everything for him to get it done is more than a headache.  They wanted him to come in one day for an anesthesia consult then the next day for surgery.  I let them know the circumstances and asked if we could do it all on one day and they figured that out and scheduled everything for thursday.  As I called hospice to coordinate transport we got a call back from the scheduler asking if he's on any aspirin and I said he's on coumadin.  BWEEP BWEEP RED FLAG!  He has to be 4 days off the coumadin before surgery so can't do it on thursday.  Reschedule time! 

This means it will be monday (so he has few days rest before chemo on thursday) and the timing is pretty terrible.  We have to be there at 8:30 for a physical and medical history review, at 9:45 he has anesthesia consult to decide if he'll be put under general or a local or some variation of the two.  He kind of wants to not remember the surgery but a general might be too dangerous for him.  We'll figure out what the best way to do it is.  Then he goes to pre-op at 1:30 so we'll have a few hours of down time.  The forecast says partly sunny so maybe we can venture down to the path by the river.  Surgery will be at 3:30 and should last about an hour and then we can go home.  

So I thought that was all settled, I was down at the hospital picking up the MRI cd so I swung by the surgical office and got the rest of the pre-op paperwork so it won't take as long to sign in.  When I got home we got a call from the Dr Cusati's nurse, Cusati will be installing the port. She wanted to tell us about the "bridge" they were going to do.  I was like um... I have no idea what you're talking about.  Apparently they were planning to "bridge" his meds from coumadin which is long lasting to injections of a blood thinner that is shorter lasting so he could easily go off it the day of surgery.  That would require him going to an infusion center EVERY DAY to get blood drawn and get a shot of blood thinner.  Um yeah, not going to happen.  The convo went something like: 

Me: It's not really feasible to move him every day which is why all these appointments are scheduled for the same day.  There were periods of time when he wasn't on the coumadin, should I check with Dr Sharman to see if maybe he can just go off it for a few days before surgery and then start back up after?  

Her: Well I'd have to check with Dr Cusati to see if that's ok. 

Me: Well does he want him on some kind of blood thinners for surgery? 

Her: NO!

Me: Then why would he care if he just stopped it?  

Her: Well I'll have to check with Dr Cusati. 

Me: How about I just call Dr Sharman in the morning and unless I call you back you can assume that he's off the coumadin as of tomorrow....

*facepalm* 

I guess all the dr's want the say on what meds a patient takes but we don't feel ok changing his meds without talking to the dr that prescribed them and also letting hospice know.  It's fine, they just aren't coordinating with each other the way we'd like them to so we (I) am making sure that's getting done.  We also have to coordinate the rest of his meds like the steroids which they wouldn't normally have him take around surgery and the morphine which could react with anesthesia.  yay for coordinating things like this.  I should get some school credits if I decide to go to nursing school!  I'm pretty sure I'm already more trained than some of the the CNAs we've encountered! 

So we got the mri results and part of the results of the cervical MRI from the neurologist read as follows.

"There is abnormal expansion and T2 hypersensitivity of the cervical spinal cord extending from the C1 level through the thoracic region.  No abnormal enhancement is seen.  There is mild progression when compared to the previous exam."    

First, I think T2 hypersensitivity is an MRI term and not literally T2 in the spine. Next, I'm not sure exactly what that means as far as where the actual tumor is since there was enhancement up to C2 at the previous exam and that's when he couldn't move his arms.  Now they're saying C1 which is all the way up but some of that enhancement could be minor?  We won't know until the appointment on the 26th. But here's a picture.

I'll try to explain a little of what we see here.  The spine should be fairly obvious, the line of lightness right behind the spine is the spinal cord.  Towards the bottom of the spinal cord on the screen is a little white blob on the right of the spinal cord, we think that's the place where he had the biopsy and laminectomy and the rough looking outer layer is the scar from that surgery so that is T9ish where the biopsy started.  Now that spinal cord area, the light grey behind the spine is supposed to be darker than that and the light color indicates swelling and/or tumor.  When you zoom in on the larger image (I didn't post that so don't get confused about why you can't zoom) you can see that the colors are kind of mottled instead of the solid look of this image.  

It's kind of awesome looking through all the MRI images even though we have no idea what any of them are!  We can guess which is kind of fun too.  

Hopefully tomorrow will be full of coordinated schedules and meds and we're going to ask a hospice nurse to come out to help us coordinate the whole thing.  Fingers crossed!

Results... Kind of.

Friday I decided to call the neurologist's assistant, Nicole.  That poor girl had no idea what she was getting herself into giving me her cell number. ;)  Anyway I had put off calling because I didn't want to abuse the privilege but we really wanted to know the results before the weekend.

To make a long story short, she called me back and said the dr indicated that the tumor has grown when you compare it to the MRI from January 18th (the day he lost feeling in his arms if you're following along).  The swelling that went call the way up to C2 (in the neck) is gone but the actual tumor has grown.  She said the Dr offered to do another laminectomy which would make more space in the spinal column but would give David 2-3 weeks of pain recovering plus potential complications and he would have to spend a couple days in the hospital.  Thanks, but no thanks.  I'm sure the dr is throwing out every possibility so there's no way we could ever say, "They didn't do everything they could have done for him." 

Even though they're telling us it has grown we're not sure how much and have an appointment on the 26th with the neuro (for reals this time) and we'll get more specifics then.  We have to keep in mind that there was a month or so of time when Dave didn't get any chemo when the tumor could have been growing unchecked.  Starting chemo back up could have made it shrink from where it had grown to, could have slowed down the growth or it really could have done nothing at all.  It's basically impossible to know from this scan.  I imagine if Dave still has use of his arms in a few months they'll want to peek again to see what's going on but for now it's back to the status quo.

He's doing ok except for the allergies.  They're hitting all of us, probably poor Ariana the most since she's also allergic to our kitties!  ACK!  She's going to have to sleep in a bubble!

Today we got a call from a surgical center wanting to schedule an appointment to put in a port.  DUDE!  We told him that someone jumped the gun on that and they didn't even actually discuss it with us and we have a lot of questions.  Poor scheduler had no idea. Hahahaha.  I called the (the oncologist) Dr Sharman's office and talked to a nurse who thought we knew what was going on and apologized for no one having discussed it with us.  I brought up the MRI results and didn't know how much longer they wanted to do chemo (more on that in a bit) plus all the other concerns, anesthesia, healing time, risk of infection, necessity, blood thinners... She's going to talk to the dr in the morning and get back to us.  If after weighing all those things the dr still says "yep, it's no big deal I think it's a good idea" then so be it and he'll probably have one because truth be told it would be a lot easier on him to have a port than to get poked 4 or so times every couple of weeks.  But if there's any significant risk of complication I think we'll bow out of that procedure as well.  They can do it under a general or local (we'd probably opt for local) and they said you can be in and out of the office in about 2 hours so it sounds fairly minor.  He's just kind of fragile right now so everything feels pretty major whether or not it actually is.

As for how much longer they'll do chemo.  I don't know if I read too much into it but Nicole sounded a little surprised that he was still moving his arms so well.  She mentioned something about seeing some growth in the cervical spine.  We're not reading too much into that until we see the scans ourselves.  I ordered a copy of the MRI but I'm not sure what the format is so I don't know if we'll need some proprietary software to view it or not.  If we CAN see I'll try to post a picture.   Anyway David is thinking that he wants to do chemo until he can't move his arms and then he'll opt to stop so that the tumor grows faster and he doesn't have to live fully paralyzed for long.  What a heartbreaking thing to have to talk about so bluntly but blunt makes it so much easier.  The bottom line is that we don't want to risk the port procedure if they don't think he'll be doing chemo much longer.  We're (I'm) hoping for at least a few more months but we just don't know.  It's like trying to make decisions while you're still asking questions. 

We've been kind of sitting on this info and processing all weekend and the bottom line is really that we don't know much more than we knew before and we were functioning just fine without knowing and we'll continue to do so as long as we have to... which will likely be forever.  It's a good thing we've made peace with that. ;)

If there's anything we've learned it's that we're adaptable.

The Result Delay

It as a 9 and a half hour adventure that left us wanting... and not in the exciting, can't wait for more, way.  Long story short there was apparently a major communication breakdown somewhere about the neurology appointment.  The miscommunication being that we thought he had an appointment and the neurology office didn't.  SUPER HANDY! In fact they weren't even open when David got out of the two hour MRI.  We're not really even sure what that means as far as when we'll get MRI results.  That kind of set us into a spiral.
He got up in the chair around 9 am, got to his appointment for chemo by 10 and waited until 10:45 to see the dr then after 3 pokes to get an IV they finally had success. They've had so much trouble putting in an IV every time that they're starting to talk about other options.  Maybe a port or a picc line.  The picc would be high maintenance and only lasts a week or two which wouldn't do him much good.  As for the port... that requires an outpatient surgery and we're not sure if he's even able/willing to have it due to the medications and how slow he heals.  It may not be worth it to stop taking those meds long enough to get a port.  Lots of unknowns right now. 

After chemo we had lunch and walked a bit outside but not too much so our allergies didn't act up and got to his MRI appointment a little early. It was a bit of a production getting him on the MRI table as the techs didn't really have a firm grasp on how they needed to move him although they did have a lift ready and available. 2 hours later they finished the tests and that's when we realized that we didn't actually have an appointment with dr hauck's office.  Terrific.

Truth be told I pretty much fell apart for a minute.  None of these things or other things that are on my mind are all that big of a deal but all of them piled up at once got overwhelming.  I'm sure getting 5 hours of sleep last night (more like 2 naps) didn't help.  I swear I think I cried more this evening than I have in the last three and a half months combined.  It's supposed to be cathartic but really it just makes me want to sleep.  Maybe it's the sleep part that's cathartic.

We have a busy day ahead tomorrow and now it also includes talking to the neurologists office about how that communication breakdown happened. They said if we scheduled the MRI for a thurs or fri then the dr could see David after the test and get results right away.  Terrific!  Then she said she'd have someone call us to make an appointment.  I guess I assumed that meant it would all get coordinated not "then you have to call us back to make an appointment to coordinate"  Whatever.  Hopefully if I give them feedback the same thing won't happen to anyone else. 

Ultimately that was my fault and it feels like just one more thing I didn't do right. To be fair I do think I take good care of him so I am not looking for a slew of "you do a good job" comments.  I know I do a good job but I also know I'm not perfect and in this I want to be. So when little "mistakes" creep in it wears on me. Is that unreasonable? Maybe but that doesn't change the way I feel about it.

Transport is such a hassle.  If we don't guess what time we'll be done with appointments exactly right we end up waiting around for an hour to be picked up.  Way less than ideal.  So now we're going to have to go in again to get results or wait two weeks?  Not that I'm irritated or anything...  Getting those results was supposed to be the payoff for the long day.  What a let down.

I was venting to Tim earlier and I made an off hand comment that someone needs to call a time out and give this team a pep talk.  The more I thought about it the more I wish it were that easy.  It's great when people try to be encouraging and "always look on the bright side of life" and all that plucky stuff but sometimes those frustrations need an outlet. And I'd be doing myself a disservice if I didn't give myself permission to let it out sometimes. It's better to vent the steam than to wait for an explosion.  Also sometimes I just have to deal with all these little things and very few people know how much stuff there really is. Even I don't always know.  Even though I'm a list maker I still forget things too.

It was cute when we got home and got Dave back into bed (9.5 hours out and about today!) I laid down and had a little meltdown to just get it out and Olive abandoned her perch on the pile of previously clean laundry on the couch (don't judge me, lol!) and came to lay by my head and purr.  Therapy kitty to the rescue!  What a nice little critter.

Dinner and a nap helped me gain a little perspective.  Not that I'm not still upset but logically I know that being upset isn't going to fix anything. These last few weeks have just set us all in a bit of a tailspin with all the little things going on with us and then Ransom passing away so there is mourning and business to take care of.  Plus we aren't able to be there for our friends like we'd like to be and they aren't able to be there for us the way they'd like to be. We're all sleep deprived and we're all varying degrees of out of sorts. 

So... Owen has a three day weekend, we have to finish our taxes (again..no judging lol), lots of hospice visits tomorrow plus figuring out what's up with the MRI stuff, mailing some insurance paperwork, hopefully find some time to see a few friends and family and then you know... sleep.  Sleep would be kind of awesome. 

A Note and a Poem

I really haven't had time/energy to write much lately and frankly I still don't but I wanted to toss up a quick note. 

David has chemo and MRI tomorrow so it's going to be a long day.  I'll try to post tomorrow night with the results of the MRI as we're meeting with the neurologist right after the scan.  That's service! 

Owen had an orthodontist appointment monday and it looks like he may get his braces off a few months early if things keep going as well as they're going for him.  Originally the dr said 20 months but it's been 6 months and I swear they're practically perfect already.  Dr didn't give us an estimate but said "several months early"  I wonder if that means we get a price reduction since the price seems to be marginally related to length of time.  I guess we'll find out! 


Today I had parent/teacher conferences with all 3 of his teachers and I snuck in visits with the principal, vice principal and school counselors as well as harassing my step-mom a little who is also a teacher at his school.  I had to let my social butterfly side shine a little while I had the chance.  Owen is doing pretty well, his grades are slipping a little (3 b's which I think I mentioned before) and David has mentioned that it was about 7th grade that he started losing interest in school as well.  UGH!  Don't tell me these things! (although it was pretty much the same for me as well)  Anyway when I ask Owen about it he says things like "I turned things in late because I wasn't being responsible."  Well.. that kind of deflates anything else I wanted to say because he just owns up to it.  He has this teenager stuff figured out. ;)  His teachers take good care of him and are aware of everything going on and they watch him.  I appreciate that more than they know.

Owen wrote a poem for class that he showed us tonight.  I love his "voice" when he writes and I wanted to share. 

Outside By Owen Wach

Outside I see
warmed, cracked concrete,
flying, crispy dead brown leaves.
Sunflower seeds, long forgotten yet still hiding.
a dusty vacant playing field,
and unkempt rogue moss,
growing 'tween the cracks,
of the warmed, cracked concrete

Outside I hear
frantic hushed whispering,
shoes squeaking on metal
outside I hear
the honking,
the honking of Canadian geese,
honk,
Honk,
HONK.

Outside I smell
A chilly breeze,
undescribable.
Outside I smell
grass,
pungent freshly cut grass.
from an exhaust-smelling
lawnmower.

Outside I wondered;
I saw an
unused playing field,
I wondered,
how long since it's last use?
that dusty field.
how long has it been since the stands,
those metal stands,
have been used by
cheering,
sunflower seed eating
crowds
of people?

Chair-A-Thon

Today we decided that since David has chemo/MRI next thursday when he'll have to be out of the house for 8 or so hours we should build up to being in the chair for a long time.  He got out of bed around 1 today and just went back around 8:15.  Just over 7 hours isn't bad.  That's pretty close to the longest he's ever been in the chair.  He's tired!  We've determined that the Temodar really makes him tired more than the Avastin, or maybe it's the combo of the two since the A is already in his system while he's taking the T.  In any case it's kind of his tired week.  Today is his last day of Temodar for April though so that's good.  

We kept his feet elevated most of the time and he had to be reclined more than "normal" but his feet are barely swollen.  I guess for now when he's in the chair we'll just have them in the down position while in motion or in transport but we'll put them up when he's in one place, that seems to keep the swelling down more.

Ariana is just about done with her first week back at school, it's been really nice having her here.  She's not here all that often and she's tidy and helpful and chipper which is a good energy to have around.  Tuesday when I spent the afternoon/evening at the hospital I was a little worried about what they were going to do for dinner so I left money for pizza but I got a text from her saying she was going to make dinner.  That was so helpful! 

Owen is just ending a grading period at school.  It looks like he's got A's and B's.  Unfortunately the B's are in math and science which... well... that shouldn't have happened.  On the one hand I feel like I should be paying more attention to his school work and on the other hand I feel like he's 13 and should have a grasp on it by now.  Not getting full points for homework when you only get graded on whether or not you did it is just unacceptable to us.  He really doesn't get that much homework (I should bite my tongue).  My parent/teacher conference is on wednesday (day before chemo) Normally you choose 2 teachers to meet with but I asked to please schedule me for one more so I can meet with all 3.  Well actually he has 5 teachers but I don't feel like I need to meet with the band or choir teachers.  Go figure.   I know, some of you are probably thinking that B's aren't bad.  That's true, but we know what he's capable of and he should have no problem getting straight A's. This material is not difficult, he's just not doing it.  He's bored and/or would rather play on the computer.  lol...  dunno where he gets that trait *whistles*


My Nana took me to get the truck today. (Thanks, Nana!)  Did I mention that the truck battery died so Ariana couldn't get home and has gotten rides from me or a friend all week?  Yeah, that stinks.  I ended up just calling Les Schwab to come out and replace the battery and it started up just fine.  Whew!  What a pain in the neck that was!  That's what I get for just letting the truck sit in the driveway for 3 months without driving it anywhere... my bad. ;)  Lesson learned. Actually I just really dislike driving it.  It's a stick.  I CAN drive it, I just don't like to.  I kind of have to get over that.

Owen gets a three day weekend this week!  Hooray!  Let's see what kinds of chores I can come up with. ;) 

At Sunset

Last night, surrounded by his family, Ransom passed away.  The swelling in his brain overwhelmed him and there was nothing more to be done.  All day friends and family streamed into his room to say their peace and wish him well on his journey.  When the nurse indicated it was time his wife and children went in to join him and I stayed in the waiting room with Tim and Rose's kids.  We told some stories and ended up just chatting about life.  One of their daughters went to make a phone call and ended up on the 8th floor where there was a nice view.  She said she watched the beautiful sunset and she knew.

Eventually we collected everything from the waiting room and made our way to the lobby of the hospital and there in the lobby was a big choir, singing hymns. Very poignant. It was a little funny that when I left I ended up in the elevator with an older couple that I didn't know.  The lady said something along the lines of "doesn't that music make you want to go to a better place"  I just kind of laughed to myself.  It was all so fitting.  Ransom wanted to go to a better place and he's the kind of guy that finds a way to get what he wants.

His ICU nurse told his daughters that a lot of people pass without visitors like this and she found it touching that he was surrounded by so much love.  It's a testament to the impact he made on so many people.  More than he knew. 

Our love goes out to his wife, kids, grandkids, great grandkids and extended friends and family he touched so deeply over the years. It's never easy to lose a loved one but there is relief in knowing that he is no longer suffering and he has moved on to his next adventure.

A friend of his from his Vietnam Vet group said something yesterday that touched me.  He said we spend a lot of time and energy dealing with and planning for things that are uncertain.  Vacations, jobs, possessions, etc but we don't spend much time planning for things that are inevitable, like death.  Maybe if we spend a little more time preparing ourselves for that inevitability it would make it easier as we'd know how to handle it.  I'm not sure what that looks like although I suppose in our situation we ARE planning for death and in some ways it does make it easier but I'm not sure "easy" is ever a word we'll associate with end of life. We just do the best with what we have.

We did make a decision yesterday though... none of us want to walk this particular road again right now so David is under strict orders to keep improving.  He agreed that's a solid plan.  I should make him pinky swear

April Already?

I can't believe it's April.  It's been 3 months since David went into the hospital.  I'm not sure we thought we were going to get this far but he's still here and doing better than expected.  He doesn't get up in the chair very often still because of the swelling in his legs but the dr said it's probably ok to let them swell a little bit so that he actually gets more time in the chair.  It's kind of a mental block for us because the swelling I guess is not too severe but it's not normal to us so we're being cautious.

Next time David goes in for Avastin (the iv chemo) will be April 12th and he'll also get an MRI on that day. It's going to be a very long day.  Chemo takes a couple hours then we'll have time for lunch and then a break then the MRI.  I say "the" like it's one but they're scanning his back, lumbar, thoracic, neck and head then they're doing it again with contrast. Hopefully we can convince them to just let him leave in the IV from chemo so they don't have to poke in a new one to put in the contrast.  All those scans will take a couple of hours then Dr Hauck will go over the results with us right then.  So we're looking at around 3 hours for all that.  Plus the 2 hours for chemo in the morning plus the couple hours in the middle for lunch or relaxing or adventuring around, maybe outside to see the river... whatever. Luckily David gets to lay down for the MRIs and he can recline for chemo if he's tired so I'm sure it will be fine.  We're eager to see what the scans say.  Has it just stopped growing?  Has it shrunk?  Has it... who knows.  Well... I guess we will know in a couple of weeks!

Yesterday he started the next round of Temodar, the at home "do it yourself" chemo. *snicker*  5 days of that.  Yay... It always weirds me out because I'm not supposed to touch it, like I have to wear gloves or drop it into the lid without touching it, but he puts it in his mouth!  Luckily it still doesn't make him sick, just tired.  Tired we can handle.  We have places to nap. ;) 

Sunday my mom and Betsy came over to help clean some things. Last week was so hectic that I felt like I was getting buried in chores that I couldn't find time to do.  Mom brought lunch and cleaned the kitchen (brave woman!) and Betsy put her organized teacher skills to work to help me clean out the closet in the computer room (Yay! Ariana actually has a place to put her stuff) and the linen/junk closet in the hall.  It's amazing, THINGS FIT IN THERE!  Who knew!  <3  Thanks Mom and Betsy!

Ariana moved in sunday night.  Monday morning was kind of a comedy of errors.  I told her she could drive our truck to school since no one else is driving it.  Well it hasn't been driven in a couple of months so sunday night I went out and started it.  It started up like a charm so I let it run for a minute (literally a minute) and turned it off.  Yeah... I should have driven it around for a while.  Monday morning it wouldn't start.  I probably used whatever there was left of the battery on sunday night when I started it.  I ended up having to take her to school.  She apologized but it was totally my fault and I should have known better.  Oh well, lesson learned.  This morning I jumped the truck with an instant jump thing and drove it around a bit.  It has some quirks but it will hopefully get her where she needs to go without incident.  *fingers crossed*  I put the jumper in the truck just in case she has a hard time this afternoon but it should be ok.  If not I guess I'll go down and help her out.   She's only been here a couple of nights but already she's been so helpful.  It's nice to have her around even though she'll likely not be here that often.  Busy college girl with a heavy class load.  French, a couple chem classes and a couple physics classes plus a job and lab hours.

I went back to the hospital Saturday because Ransom ended up having to have another surgery.  His brain pressure was too high so they removed a bit of skull to relieve some swelling.  A week before this surgery Dr Hauck mentioned it was likely that things would get worse before they get better but I'm not sure if this was in the plan or not.  I'm thankful that they have such a close family and that they have come together to support each other in such significant ways during this time.  I know that together they'll get through whatever path this adventure takes them down.  I wish we could be there more and it's hard to know how much to text or call without bugging people... now I know how they feel about contacting us!  I just know that even if there isn't anything we could do at the hospital sometimes it's just nice to have people there with you for support.  We're very blessed to have such amazing friends and we love them and want them to know they're always in our thoughts and prayers.