Hospitalization

Brian was updating Dr. C yesterday about how he is doing.  Her recommendation was that he admit himself to the hospital – so this is what we’re doing tomorrow.  Someone from the hospital is calling us when a bed is ready and we’ll head that way.  My hope (and belief) is that it will only be overnight. He’ll get fluids, some IV anti-nausea medication, some blood work, and some urine screens.

He continues to feel poorly, the nausea is the worst part.  Yesterday he ate 10 tater tot’s and today he had a 1/4 of a cup of chicken salad.  I asked him to mentally prepare to eat half of a protein bar tonight before bed.  He said he would try.

Brian’s farewell reception at Elon was supposed to be tomorrow afternoon, but the nice res life folks have agreed to reschedule it for Friday afternoon.   I’m confident that we’ll make it.  Brian really wants to see everyone, it means a lot to him and I’m not sure how well he’ll cope if he doesn’t get to.

To say I’m worried is an understatement.  What’s frustrating is not knowing what to be worried about.  Is this bad?  Has the BRAF stopped working?  Is this a blip or an actual wall?  What if he can’t get in to the new clinical study because of the brain metastasis?  Is that a death sentence as far as new treatment goes?  Will he get better?  What do we do?  What’s the next step for us?  How scared should I be?  How scared can I get and still function in daily life?  What do I do?

I don’t know what to do.

The Blog?

We’ve been contemplating ending the blog.  Neither of us want to , but more and more it seems the better thing to do.  What I’ve learned is that a blog is a living thing.  Most of the time, this is pretty cool.  We’re all creating something here that both captures what is currently happening and will also live beyond the moment.  I love that about it.  I love the participation, the conversations, the level of support that we get through the blog. If you’ve ever left a comment you’ve contributed to this living thing and shaped it in a new way.  Years from now this will exist and we can see what we thought and what we said and how we helped each other.  But while I may own the blog, I don’t entirely control it.  It means something to me, it is both special and important to me.  However, it means something different to each person who reads it.  It is both special and important to 100+ people in 100+ different ways.

Specifically what I don’t control is how people react to what I write.  This is at once completely reasonable and problematic.  Firstly, I pretty much put myself out there.  Not 100% but pretty close.  I do censor myself when it comes to things like swearing and I do try to be intentional about balancing lightness and heaviness.  And I do LABOR over my topics.  Is this too “out there,”  will people understand where I’m coming from, will this offend people, will people think differently of me, will people think poorly of me if I confess that I don’t always want to take care of Brian? I think carefully about those things.  But once I start writing I’m pretty wide open.  No real point to it if I’m not, you know?  I mean, I’m glad that people read the blog, but I’m working my own stuff out when I write.  Trying to name it, place it, in all its insecure glory.  Now I wonder how smart it is to work my stuff out in a public format.

There has always existed some differences of thought and belief between myself and Brian’s family.  And that has always been absolutely ok.  I’ve always felt accepted and cared about and loved by every single one of them.  And I, in turn, have always accepted and cared about and loved each of them.   But I wonder if that  works because the differences between us were vague and ill-defined.  Like, we don’t talk much about politics, no one (except Lily!) asks why I don’t go to church.  And if matters of personal politics do get brought up, the topics are quickly dropped or not responded to thoroughly.  It works.  For all involved.  And it’s good.  I actually think this is how many families work.  I think.

But I worry that not only is the blog highlighting our differences, but it’s also defining them in a very new and real way.    I don’t know how it appears, but putting myself out there in such an open wide way is difficult and I feel incredibly vulnerable doing it.  At a time when all my instincts are telling me to go “turtle” or “potato bug” and just curl up until it’s all over, I am doing the exact opposite.  Very scary stuff.

So when I put out this raw stuff I think it’s probably impossible for me to not feel concern or anxiety about what will happen to it when it’s out there.  And while I am aware that a significant portion of the readers , in no way limited to direct family members, might or do disagree with my opinions or our approach to mental health or dealing with cancer in general, it can create some tension.  And OMG, can I just say that I already have enough tension to totally stress out a medium-sized country?  LOL!

So part of me wonders if I’m helping or hurting our situation with the blog.  Maybe people simply haven’t signed up for “Nadia without her best foot forward.”  Or “Neurotic Nadia Uncensored.” Maybe I’m wrong to put it out there. Or maybe I’m disrupting the delicate (but beautiful and much appreciated) balance that is family?

I don’t want to stop blogging but I also don’t want to alienate people (or myself!) and I don’t want to offend anyone (I can be absolutely  Myself without offending anyone in the process – it’s called a journal)  and so I need to reconcile this or move on.  I don’t know what the right or best thing is, though I’m confident that it all works out.  Thanks for reading – it means a lot.

Absent and Vacant and Sick

More and more, I experience Brian as being absent and vacant in his waking hours.  We don’t really have conversations much any more.  We either sit in total silence or Brian sits and stares at the wall while I make dinner or do the dishes or do some other work around the house.  He’s not a zombie or anything, he responds to questions and even will initiate conversation, but they mostly just taper off into nothing quite quickly.  If we’re having an argument he just stops talking altogether or goes upstairs and goes to bed instead of resolving the disagreement.  It can be infuriating.  I don’t know where he’s gone.

I’ve asked him if he thought the Paxil could be making him so vacant.  He said no, that if anything, he felt more connected internally and was very much present in his head.  Awesome.  So am I being shut out.  And whether consciously or unconsciously on his part, I would still experience it the same. He is simply very sick right now.  I think it’s possible that the BRAF is no longer working for him.  This is how he was before the BRAF.  Always sick, always in bed. After being on the BRAF for a week, he was more and more like himself.  Now he seems to be reverting and we don’t know what that means.Whatever it is, it’s very lonely.  Which, I know is a feeling he experiences too. But I can’t be his counselor (nor would he want me to be).  His conscience may nor want to think about the current state of affairs, but his subconscious doesn’t seem to be letting him off the hook.  Or maybe it’s me.  Maybe we’re just reflecting all our negative shit at each other and he doesn’t want to talk to me.

More than once I have thought, “if he won’t talk to me then we don’t have a relationship.  And if we don’t have a relationship then what I am doing all this for?”  More than once I have thought, “what is this for him if this is going to be his quality of life?  Do things improve again?  Where are we?”

1,502nd Place

• The results were posted online from the race.  I came in 1, 502nd out of 1,772.  Not too shabby for a first try!
• Experienced some car trouble this weekend.  I went to visit my mom and the battery of Brian’s car died.  I had a friend come out and give me a jump and then got 45 seconds down the road and the car died again, this time while driving.  I called the towing people who sent their “battery guy” out to me.  He changed the battery but told me that the real problem was the alternator.  It wasn’t keeping the battery charged properly.  So he followed me a couple of miles down the road to the mechanic and after I got squared there, walked home.  Four hours of my Saturday.  Ugh.  Plus the price tag to fix the alternator in a Ford Escape is unbelievable.
• Brian slept for most of the weekend.  He had a good eating day on Friday, but that was the only good day.  Yesterday he had a full pj&j and I think that was it.
• I spent two hours cleaning the house yesterday.  It so needed it.
• Not sure if we’re going to go to the doctors this week or not.  That’s Brian’s call.  I doubt that we will, since we’re going in on Monday for the brain MRI and consult.  I’m sure we can just add on the rib cage while we’re there.
• Getting ready for the sweat lodge this weekend.  I am making prayer ties.  144 for Brian and Allen asked me to make 144 for me as well.  He let me know that he has a prayer for me as well – thus the extra prayer ties.  It’s hard to describe what they are, small squares of fabric, tied together with a little bit of tobacco in each one.  So far they aren’t difficult to do and I’m about half way done.
• Brian’s farewell reception for work is this week.  Tammy let me know that she was able to find some vegan food on the catering menu, so I’m really looking forward to it.  I’m sure it will be difficult for Brian (not the food part, but the saying goodbye and moving on part).  It will be nice to see Elon folks again.

So I guess that’s a look back and a look forward.  Take care –

Thanksvegan 180

The race was very cool.  Two MAJOR hills though.  In addition to the hill on one end of the lake, they had the race ending above the park.  So the last quarter-mile was straight UP.  I wasn’t sure I was going to make it.  But I did. My heart rate at the end was crazy high. They have signs at the start of the race that have different paces on them – so you group up with people who run your pace.  So all the people who run an 8 minute mile group here, 9 minute mile people group here, etc.  The last sign alllllll the way in the back was 12 minute mile.  I WISH I ran a 12 minute mile.  When I got back there the first person I saw was a pregnant lady who was probably 6 or so months pregnant.  Awesome.  The pregnant lady is going to toast me!

I had a good time this morning.  Here are a couple funny and/or good pix that Brian took.

This is the picture of me running past Brian at the end of the first lap

 

The Finish Line! Finally!

When I crossed the finish line the race clock said 41 minutes and some seconds.  My heart rate monitor (which I started when I got to the start line) said 39:28.  Those hills where KILLER.  So I’m pleased.  And while you cannot tell from the picture, I did not finish last.  So all goals accomplished.  Entered a race, ran it without stopping, did not finish last.

 

Leaving the Race, Feeling Good

 

In Thanksvegan news all is a complete 180.  Brian continues to not feel well.  He was fighting nausea and pain all morning.  Both bottom ribs are really hurting him and making it difficult to move.  He was able to be out of bed for a little bit yesterday and had a good dinner as his one meal of the day.  He also ate some Oreos in the afternoon.  So, we had scaled back Thanksvegan to just a couple of things.  Low key.

This morning I got a message from my mom, she is feeling really sick too and has some kind of respiratory infection.  So she didn’t want to come over.  She wasn’t up to it and she didn’t want to make us sick.  So now it’s just me and Brian.  Which means…. frozen pizza, chips and salsa, and a store-bought mini pumpkin pie.  Plus Captain America!

I did make the gluten-free mac and cheese for dinner last night and it was really good.  Very cheesy.  Also,  we tried out the celebration roast and it was good too.  I definitely can’t eat any more because it did make me ill, but Brian said he will make sandwiches out of it during the week.  I also made the gingerbread with spiced buttercream.  We haven’t eaten it yet, but I licked the bowl after I made the frosting and it was AWESOME.  This was my first time baking with molasses and, um, molasses tastes nasty.  It looks so good and kind of chocolatey.  But tastes like tree bark.  And I know tree bark.  🙂

So Brian is napping now, we’ll probably eat our frozen pizza in a couple of hours.  Going to Skype with my cousin at some point this afternoon as well.  I hope you are all enjoying your Thanksgiving Day.  It has been a tough week for us, but we’re doing ok!  Take care everyone!

Sweat Lodge

I’ve started this post three different times and three different ways.  I don’t know why it’s been so difficult, but I wanted to mention it to remind myself to keep thinking about why that is. …

______________________________________

I’ve mentioned before that I believe we select our experiences and relationships before we come to this life.  I think this is why I don’t spend a lot of time on “why.”  Why?  Because this is what I signed up for.  No judgement, just the experiences.

I believe we select our significant relationships (and sometimes less significant).  I also believe that we agree to cross paths with people at certain points in our lives for specific reasons.  Maybe to learn a lesson, maybe to be helped through a hard time, maybe the person has a gift or experience to share with us that will help us later.  Who knows.  Most of the time those things are so subtle that we don’t notice.  Other times, it’s more obvious.

Like I believe I happened to meet my friend Niki briefly and somewhat uneventfully by chance one day so that six months later she could remember me, call me up, and change the direction of my life.  That’s an easy one.

So it is with my friend Allen.  I believe our souls got together and Allen’s said,  ‘In 34 years we’ll meet and it will be a tough time in your life.  I’ll have a deep spiritual belief and I’ll share my experiences with you in the hopes that our friendship will be helpful.  And so it is.

Allen practices a Native American spiritual tradition and after listening to our story unfold over the past  year, he has offered to do a sweat lodge for Brian.  A sweat lodge is an ancient way of praying.  An ancient way of being with the earth.  The idea is that Brian will tell us what he wants us to pray for and then we’ll all focus on that during the sweat.  The idea is not, of course, to indoctrinate anyone, nor is it an attempt to cure Brian.

This will be a gentle sweat (well, as gentle as they get), not a warrior making or hazing kind of experience.  The idea is that a group of people who care about Brian will focus their attention and love on Brian and that the spirits will bring some peace and whatever else we’re in need of.  After the sweat we’ll share a small meal that everyone will contribute to.  Another ancient tradition now known as a pot luck!  The whole thing will take about three hours and will be done on December 3.

My hope is that we shake off some of the fear that we’re walking around with.  That we feel lighter in our skin and that some of the burden that is cancer can be put down, or transformed into something else.  Kindness to ourselves, gratitude for what we have.  Forgiveness.  Love for each other.

Another Week in Review

Last week was kind of a dud as far as updates go.  Brian has been ill since Wednesday and has been in increasing amounts of pain, yesterday being the worst.  I guess I’m a day late with this as well… but here it is.

• Three hours worth of yard work yesterday and I’m done.  Not that the yard is done, but I am.  I am so sore today it’s a tad unbelievable.  I borrowed a leaf blower and got everything into ginormous piles, raked it on to a tarp and hauled it to the far back part of the back yard – the jungle-y part.  I spread the leave out there and then, because there were still so many leaves left on the ground, I busted out the lawn mower and mulched the rest into the ground.  What could possibly be left you ask?  The garden needs to be turned over, the compost needs to be worked through, the driveway needs to be done, and the porch needs to be swept.  You cannot actually see the porch on the left side – it is buried in leaves!
• Brian continues to be in bad shape.  His broken rib has started to cause him significant pain.  He’s also feeling a good deal of pain on the ribs on his other side as well.  The lidocaine patches aren’t doing much so he’s taking an extra percoset during the day as well.  On Sunday he ate some tater tot’s, half a pb&j.  He’s also drinking quite a bit of Gatorade, so I don’t know how many calories he’s getting from that.  But the people at Tommy’s gas station have gotten pretty used to seeing me buy up the Gatorade this past week.
• We’re not sure what we’re going to do if Brian doesn’t immediately feel better, which seems unlikely.  My plan was to go Thanksgiving grocery shopping on Tuesday.  If Brian is going to be sick, unable to get out of bed, unable to eat, there isn’t much point in getting everything.  Also, as amazing as I am, Thanksgiving prep requires two sets of hands.  So I don’t really know what to do.  It might be easier to go the old Alamo family route and just get Chinese take out for Turkey Day.
• We also have some nice post T-Day plans that are up in the air.  We were hoping to have dinner with some friends on Friday night and then on Saturday we were going to travel to Boone for the day, do some window shopping, get coffee at E-News ( were they have the best coffee in the whole wide world), eat at at least one amazing restaurant (more if we can figure out how to work it in!), and just tool around town.  But again, not sure, even if Brian was feeling better, if a trip like that is the best thing right now.
• Getting ready for the race on Thursday.  Ran my last 5k before the race yesterday.  My time was 38:22.  I’m hoping to pick up my race packet on Tuesday.  I’ve got to drive all the way out to Greensboro to get it, which is a long haul when you’re starting in Chapel Hill.

Not much else.  Tending to the back pain and rib pain, trying to alleviate the nausea, trying to see how our plans need adjusted.  Happy Monday everyone – I hope the short week goes fast!

Not Much Better

Brian is doing about the same as he has been, which is to say not very good.  He was able to get out of bed today and come downstairs to watch a couple of movies.  I got him up about 12:30 and he took a shower and brushed his teeth!  His back is still bothering him a lot and he says he feels as though he has some kind of a flu or virus.  Still feeling the same pressure in his stomach and groin area that he has been feeling for two weeks.  So, while the lactulose has unplugged him, the symptoms that led Dr. C to prescribe the lactulose in the first place are still with him.

He ate a bowl of soup today, a small serving of tater tots, a protein bar, and a few oreo’s.

I’m really worried about how he’s doing.  Being sick sucks so much.  Imagine being sick since January.  Eleven months of no more than a full week at a time of feeling good.  Three hospitalizations this year, two majorly invasive treatments, completely missing June and July due to sleep, a major depression that won’t be cracked. How tired would you be if you’d been sick for almost a year?  How deflated would you feel?

I’m so tired, some times it gets the better of me.  I want more for Brian.  I want happiness for us.  This is not a life of any happiness right now.  He deserves more.

Thanksvegan Weekend, pt 2

Thanksgiving for us (like most people) will start Wednesday afternoon.  We’ll start cooking all the things we can that evening.  Rolls, the pie, whatever we feel we can get away with.  Because Thursday morning starts off bright and early with a 5k run!

*screaming fans in the background*

Two weekends ago Brian and I drove out to Greensboro and went to the park were the race will be held.  It’s a good thing we did because the interweb directions took us to a gate that I believe is permanently closed.  We had to stop a guy walking in to the park with a fishing pool to ask him were an open gate was.  He pointed us in the right direction (go past the giant turtles on the side of the road and make a left) and we found our way in.  The course is two laps around the lake and there are at least three big hills.  I don’t really care for hills, you know, being so “up” and all.  But what can I do?

Brian and I took a stroll around the lake once and it took us about 34 minutes.  Brian said I should double that, and then all I had to do on race day was beat that time to have a personal record set for the course.  That’s one way to look at it.  It was a nice Saturday morning though it was pretty chilly.  The entire course is paved, which I like and it was fairly pretty to look at.  Though this might be different by the end of November.

My running has been going ok.  Shin splint issues and IT band issues as well this week.  I think it’s because I’ve been doing speed work and that’s just been harder on my legs.  Have I typed this before?  Sorry if it’s a repeat.  My 5k time two weekends ago was 38:09 and this past weekend was 40:40.  I was going super slow because of the pain.  Don’t want to completely take myself out of commission.  I’ve been stretching like a mad woman, popping in the yoga DVD, and using the foam roller.  I think I’m going to be ok, but I’m going to stop aiming for speed (cuz that’s a joke anyway) and just aim for finishing.  Which is what I’ve been saying out loud all a long, but secretly aiming for speed.  Now that the shins have spoken, I know my place.

The walk starts at 8a and the race at 9.  I don’t plan on sticking around much afterwards – good food to be eaten at home and all.  So I hope we’re back in Burlington by 11 or 11:30.  Then we’ve got to go check out my mom from the nursing home and get the rest of the food on!  The tentative menu:

• Celebration Roast (already discussed, fingers crossed that we like it)
• Sourdough Stuffing with Pine Nuts and Raisins
• Brown Gravy (GF)
• Fluffy Pull Apart Dinner Rolls
• Sweet Potato Casserole
• Waldorf Salad (GF)
• Baked Mac and Cheese (GF)
• Pumpkin Pie with Praline and Coconut Crust (GF)
• Pumpkin Gingerbread with Spiced Buttercream Frosting
• Whipped Milk Cream (GF)

As you can see, quite a bit of gluten.  And quite ambitious.  We’ll see if anything doesn’t make the cut.

A Thanksgiving tradition in my house growing up was a Thanksgiving afternoon movie (we didn’t have cable growing up and we’re not big football fans anyway).  So the past few years that we’ve been having Thanksgiving with my mom we’ve kept the tradition alive.  This years movie will be Captain America.  So after lunch we’ll pop in the DVD and bliss out on dessert and the ensuing food coma.

I’ll miss the Collins Family after lunch walk around the neighborhood.  If I am able in any way to walk after we get my mom settled back in, I will represent in NC!  🙂

One Week Later

We loved having you!