I Do The Floors On Wednesdays (part one)

FROM BRIAN

I’ve been back from Ohio now for a little over a week. As you saw from Nadia’s posts I had a little airline trouble getting there. Fortunately, getting back was just the opposite. I walked off one plane and was basically able to just walk right onto the next one in Charlotte. My only annoyance was the people who would just stand on the moving sidewalk. It’s not a carnival ride, folks! It’s there so you can get to your gate on time. Oh, and also so you can know what it is like to have super-speed like the Flash or Superman. “Stand aside, citizens!”

Ohio was fun. It was really great to catch up with family and friends. One of the perks of working in the field of student life is you make friends in different cities and states. The drawback is that if you put them all in the same room no one would know each other. For me that meant arranging for many different visits.

I was able to catch up with some college buddies in Columbus for dinner: Phil J. and Matt S. Phil and I were freshman year roommates. I moved in at the end of Winter Quarter destroying the super-single he had put together. That may explain why he hung a life-size Reservoir Dogs poster of Mr. Blonde with his guns drawn and pointed at my bed. Regardless of the subtle hinting of getting shot in the middle of the night we quickly became friends and obviously still are great friends today.

The mod/suite we lived in that year had a bunch of great guys: Phil, Matt, Big Mike, Little Mike, and Rob S. I was hoping Rob would be able to join us for dinner, but he is now in Chicago. Phil, Rob, and I lived with each other after college in Columbus. That went well until someone got caught sleeping naked with his girlfriend under someone else’s grandma’s afghan. In the living room. Things got tense for a while after that.

Anyway, this was the group I would hang out with when I needed to get away from Res Life (which basically was my life in college). We had a lot of fun doing things I’m not going to cop to in this blog as I need to maintain a squeaky-clean image for several of our regular readers. Needless to say, I wouldn’t want any photos of Karp Fest popping up anywhere.

Phil, Matt, and Rob recently came through for Nadia and I in a big way and a totally unexpected way. I was glad to be able to thank Phil and Matt in person and now Rob, all I can say is “Thank you, man.” I never doubted you guys had my back. I hope you know I’ve got yours.

Brian

Blog Happiness

We now have FOUR subscribers!  WOO HOO! (Thank you David for tipping us over from the “big 3” to the “even bigger 4”).  We also have 71 comments posted and my secret goal (which is no longer a secret in 2 seconds) is to get to 100 comments by Halloween.

To our loyal subscribers, thank you.  You make me happy.

Quick Update

I am posting less because, if there isn’t a readily available and needed update, I’m having trouble coming up with new topics.    Trying to figure out what stories to share is hard.  My privacy shield kicks in and says “no, not that one” to everything!

But a quick update is in order:

• Brian’s uveitis has cleared up in his right eye (yeah!) and moved to his left eye (BOO:().  He was able to make an appointment with the ophthalmologist for tomorrow (guess ophthalmologists don’t book up way in advance).
• Why does ophthalmologist have the extra L and the extra H in it?
• We’ve been talking about volunteer opportunities and Brian’s been doing some online research.  I also just got off the phone with my good bud Mary M. at Elon who is the guru on all things service-oriented. She is going to put some thought into our needs and our restrictions (like, can’t be outside, sun = bad and can’t be TOO manual labor intensive.  Cancer tumors don’t like to be exercised).
• Mary also mentioned hospice as having some great services like yoga and healing touch for cancer patients.  She’s going to send us info but maybe something like this would help provide a little more structure to Brian’s day, give him something positive to go and be a part of AND benefit from.
• The Genetech pharmacy folks called Brian yesterday to help him order next months pills.  It was a robo call at first and so Brian just went with it.  The robot kept him on hold for 10 minutes and then said that no one was available to help him order the drugs.  THEY called HIM!  LOL.  So hopefully the robot will call back and Brian can get the drugs.  Free drugs run out on Monday!
• Last night we drank cherry juice!  If you could see me I’m jumping up and down.  This is not your average juciy juice cherry juice.  This is straight up cherries, no sugar, no nothing.  All the doc’s and pharmacists say that cherry’s are excellent at fighting inflammation.  The bad news is that with no sugar, I couldn’t get Brian to drink it.  So last night we both did a shot of cherry juice (in Kings Island shot glasses) and IT WASN’T HORRIBLE.  He had to admit it.  So we’re going to increase our cherry juice intake each day (hopefully) and hopefully it will help with joint and eyeball pain.  But I told Brian he can’t just have a shot of it and then say it didn’t help!
• We are preparing for our Asheville trip this weekend and the sunrise ballooning extravaganza.  And by preparing I mean “hey, we’re going to Asheville this weekend.”  “Ok.  cool.”  Actually planning to come later.

So, a little each day, each day building on the last.  Working to create a new routine and new purpose.  Accepting of set backs and not beating ourselves up too much.

I’m going to see my mom after work at her new digs at White Oaks.  Brian is picking up a Panera dinner for us.  Hopefully the evening will be restful.  Peace to you all.

Depression

Depression sucks.

For a lot of reasons that you can guess (and which I will probably name at some point).  But also because it is hard for people who have never been depressed to understand what you’re going through.  I think everyone has been down and out at some point.  Low confidence, low self-esteem, bad day, bad week, but depression is different.  It’s a weight on your shoulders, a weight on your chest, a weight on your back.  It makes getting out of bed impossible, showering impossible, caring impossible.  And it’s not a matter of “buck up sonny”  or “think positive” or “just do it.”  When you are depressed it simply isn’t possible.  And that is what is so hard to explain to those who haven’t experienced it.  To someone who isn’t depressed it is hard to explain why you simply can’t do the things you meant to do.

I actually work with a lot of depressed students.  For some of my students, depression is the least of their problems.  It can be so frustrating to work with them.  You help them make simple step by step plans to begin to dig themselves out of the hole they’ve made.  They come back in a week and they haven’t accomplished anything.  Or, more often than not, they don’t come back and you have to chase after them and track them down.  Time and again I find myself asking, “why can’t they just do this (whatever it is)?  It’s so simple.  Why can’t they help themselves?  It will take them 20 minutes, why don’t they do it and get it over with.  They will feel so much better when they’ve accomplished this/resolved this problem/put this behind them.”

But they are depressed and so they can’t.  The need for unlimited reserves of patience is another reason why depression sucks.  Who has unlimited reserves of anything?  Especially patience.

Such has been the week in the Alamo-Collins house.  Brian had a couple of good days upon his return from Ohio.  On Wednesday he swept and mopped the entire downstairs (it so needed it) and he was up and about.  On Thursday I had to go to my mom’s new nursing home to do some paperwork and Brian made dinner for us (cornbread and baked sweet potatoes).  But over the course of the week he’s been sleeping more and more.  More like June and July when he was sleeping all the time.  He’s been eating less and less.  Not showering.  Not accomplishing the daily things he needs to do, like getting some prescriptions refilled, setting up an appointment with an ophthalmologist.

On Wednesday night Brian was telling me that he feels a little lost, not knowing what to do with his days.  Not knowing how to feel about not working any longer, not knowing how to feel about our current state of affairs.  This weekend I’ve been frustrated because he once again slept through my two days off so we haven’t really seen each other much this week.  This afternoon he got up from sleeping and came downstairs to where I was reading.  He told me that he didn’t feel good but didn’t know why.  He’s gotten his days and nights reversed, he hasn’t showered since he got back from Ohio, hasn’t felt like doing anything but sleeping.

I told him I was afraid that he didn’t have enough fight in him.  And he agreed that lately, he hasn’t had any fight.  I said that a lot of my frustration was stemming from this – because I’ve been trying to have enough fight for both of us, but what I’m coming to understand is that it doesn’t work that way.  He’s got to find it in himself and decide for himself that he’ll do whatever it takes.  Me doing whatever it takes doesn’t shrink tumors.  It just makes me tired!  So we’ve got to switch gears a little and pull some of our cancer fighting energy off the front lines so to speak, and put it to work going head to head with depression.

Each thing as it comes.

Purpose

This morning I was talking with my friend and co-worker Allen.  He asked me how Brian is doing and I started off by telling him about the uveitis – the latest development.  I was talking about inflammation and how I hoped that Brian would begin to eat more greens in order to combat this.  Brian wants to go back up to 8 pills a day but in her last email, Dr. C mentioned adjusting the dose of BRAF in response to the uveitis. I can only imagine she meant adjust down.

I was telling Allen that I hoped that Brian would support his body’s fight against the inflammation with a more alkaline diet so that perhaps he could go back up to 8 pills a day.

Our conversation then moved toward the mental and emotional (we are student affairs professionals after all) and I was relaying my thoughts on our current struggles.  Right now, for Brian, there is a big void in the “purpose column” of life.  What do you do when you’ve spent your entire professional career helping people and then suddenly have no one to help?  Why do you get out of bed when it will be the fifth day in a row that you had nothing to accomplish (in the manner you are used to accomplishing things and at the same level of responsibility that you are used to accomplishing them)?  How much are you allowed to enjoy yourself when you are supposed to be on long term disability because you’re sick?  How do you get over the fear and depression so that you can move in to action – any action?

Then Allen started to talk about love.  He said that love is the most powerful force and is the best way to pull yourself out of the cycle of fear that something like cancer keeps you in. He talked about love becoming the new purpose and about looking for ways to bring more love in to our lives.  He said that whenever he had clients who were depressed and could find absolutely nothing good in their lives he told them to go to the grocery store.  Go to the grocery store and be especially nice to the person who checks you out.  Focus on intentionally making them feel good and feel happy.  Then see how you feel.

Becoming someone who is focused on bringing more love to their life and the lives of others is one way to make meaning and purpose out of cancer.  Doing volunteer work, walking dogs, keeping better tabs on friends – all ways to shift the focus from the internal fear to the external joy of helping/caring for someone else.  Be an agent of positivity in others lives and positivity will find you in yours.

It was a great conversation and I’m not doing it justice.  I find Allen to be a very spiritual person and our talk reminded me of how “in my own head” I have been.  I often allow my head to talk for my heart because this is safest, easiest, and most  thing to do.  I do it so often that I sometimes forget that it’s not my heart talking.  That I don’t really open my heart up to other people for dialogue or sharing.  It’s easiest to speak with feeling words and let others assume they are glimpsing my heart.

I know for sure that from time to time I take all of my close relationships for granted.  But if there is one that I take for granted most consistently, it’s my relationship with god and the universe.  I know where I’m going.  I know where you’re all going.  It’s the same place no matter what we do or don’t do in this life time.  This certainty that I have allows me to turn off my direct link to god – my heart.  In order to conserve energy during tough times, in order to run the rat race, in order not to have to be truly vulnerable or truly feel pain, I talk and feel with my head and convince myself that it’s my heart.  But this closes me off from the universe, or maybe makes the connection more like a clogged artery (because my heart isn’t dead or anything, it’s just been really well insulated).

And then today Allen says, “tell Brian to love more!”  And I’m remind of the spiritual beings that we all are and that you don’t have to be cured of cancer to live a life free of fear.

Seriously good chat this morning.

Home Again Home Again

He’s been in the state all of four hours and already the to-do list is a mile long.

• Brian’s eye started bothering him shortly after he got to Ohio.  He thought it was allergies because he always gets some kind of sinus/allergy thing whenever he is away from home for more than 12 hours.  But it didn’t improve and he ended  getting it checked.  The doc told him he had uveitis.  This means that something in his eye is inflamed.  Which sets off a red flag for me because inflammation is the Achilles heel of the BRAF drug.  Is this inflammation of the eyeball a new manifestation of the inflammation in his joints?  Got to call Dr. C.
• The doctor gave him a couple of different drops, one of which is prednisone.  Brian has been on so many different drugs and been through so many different treatments that we can no longer keep anything straight.  But both of us remember that steroids were a big no-no for at least one of his previous treatments.  So he needs to make sure that it’s not also a no-no for BRAF. The eye doctor was of the opinion that taking it topically shouldn’t be an issue, but….. reason #2 to call Dr. C.
• And finally in eye related news, Brian needs to find an eye doctor here at home to follow-up and have the uveitis checked.  Lots of questions – is this common?  how long will it last?  what if it doesn’t go away?  what causes it?
• The Genetech people called Brian.  WOO HOO.  Contact from someone referencing anything having to do with our insurance and transitioning from the trial.  Final evidence that we are important links in this chain.  Not sure of the details but it sounds like Brian got some assurance that they are aware of us, getting ready to help us switch over, and that we would not, in fact, have to pay the $2500 monthly co-pay.  Now, when it comes to this stuff, I’m a “believe it when I see it” kind of gal.  But I do feel better that they’ve made contact and that they understand we’re not Rockefeller’s.
• Anna from SC also emailed and let us know that Brian’s last appointment in SC is 10/3 (the day we were supposed to be ending our leisurely adventure in the mountains).  We have to be there at 9am so that Brian can start drinking the contrast and have a PET scan at 10am.  I’m hoping that they will be able to share results with us that day.  I am curious to know where it is and how big or small it all is.  This is the day that Anna will be taking the remaining clinical study drugs from us.  So as of the p.m. dose on 10/3, we need to have the commercial prescription in place or Brian has no drugs to take!
• Another thing Brian realized tonight, the mortgage folks never connected with him, so we have no idea what’s up with our refinancing.  Brian’s got to call Norma the Mortgage Lady tomorrow.  Need to get that monthly payment down!
• And in family related news I got a call from my mom’s social worker who let me know that they have not gotten any long-term beds to open up and they can no longer keep her in the short-term bed (that she’s been in for 3 months).  So…. they are transferring her to another facility.  Yup.  You are correct, it doesn’t end! So this weekend I went nursing home shopping again and found another good one about 3 minutes from where my mom is now.  It’s called White Oaks, affiliated with the hospital, snacks between meals.  My mom was sold.  So, in about one week she’ll be moving and we’ll have to get her resettled.  My mom, like Brian, doesn’t travel well.  But hopefully this will mean we can get her room set up and get a telephone line installed and maybe some cable.  My hope is also that she’ll like this place more – simply because it isn’t the first place.  If that makes any sense?

I’m glad Brian is back.  It’s nice to have him around.  It was a quiet two weeks and I didn’t once go to the pharmacy (I hate the pharmacy).  Now it’s back to business.

Food

I took Brian’s absence as an opportunity to enact some diet changes. Since the day he left I have been gluten-free and about 80% sugar-free.

I have long suspected a gluten intolerance.  Every evening (particularly on pasta nights) was like gastrointestinal warfare.  Life in my colon was uncomfortable and noxious (if you catch my meaning).  And that really started up for me when I became a vegan.  I don’t know if I started eating more gluten products as a result of eliminating meat and dairy, or if something about the meat and dairy made the gluten intolerance less noticeable or less of an issue.  I can’t say.  But I can say that it was getting worse and worse.

I had made some half-hearted attempts to determine if I was gluten intolerant, but unfortunately I wasn’t educated enough to know all the places that gluten lurks (like soy sauce, or many herbs, beer, and couscous).  Gluten, I have learned, is lurking everywhere.  What’s an intolerant girl to do?  Well, I educated myself with a few books and blogs and made the cold turkey leap.

It was fabulous.  Instantly better.  Night and day.  I was so grateful.  No more uncomfortableness no more guessing about what my problem might be.  After about four days I actually tried a little experiment.  At the co-op they had a Thai peanut tofu dish on the hot bar and I tried a sample of it.  I’m talking about an 1/8 of a cup. It was made with soy sauce and I wanted to see if I noticed anything. That night?  Gastro-intestinal Armageddon.  I thought I would explode.  What I’ve learned is that with a gluten intolerance, your reaction is not proportional to your intake.  So I could eat a whole Olive Garden sized bowl of pasta or a little 1/8 of a cup of a Thai dish where soy sauce was the 6^th ingredient listed and have the same sized reaction.  Any amount of gluten is painful for someone with an intolerance.  Duly noted.

On to tackling sugar.  This stuff is everywhere.  Eliminating desserts was easy enough (I mean, not EASY, but like, easy to say “that double chocolate espresso vegan cake has sugar in it.”  And even eliminating additive sugar wasn’t too difficult.  It’s easy enough to read a label and say no to the fructose, sucrose, HFCS, brown rice syrup (well, anything with syrup in the name) evaporated can juice, etc.  Easy enough to identify, and honestly, easy enough to abstain from.  I have read that sugar cravings greatly decrease when you are not eating gluten (and the carbs that come along with it).  I will say that this has been my experience.  Other than a nostalgic feeling for the sweets in the bakery case at the co-op, I really haven’t had to battle any knock down drag out sugar cravings.

But maybe that’s because I’m still eating sugar.  Because sugar is also a pretty big component of natural foods too.  One Valencia orange?  23 grams of sugar.  One regular sized snickers bar?  30 grams of sugar.  Not a humongous difference – when looking solely at sugar content.  There is much debate regarding the sugar in fruits.  Some researchers land on “restrict fruit as much as possible because sugar is sugar” and some researches land on “sugar from fruits is better for you than additive sugar and it’s a whole food with lots of other nutrients so eat it because it’s good for you in other ways.”  I haven’t decided where I land.  For now, I am continuing to eat the same amount of fruit that I always have.  I have such a restricted diet already that I can’t really afford to eliminate fruit.

What does this have to do with Brian or cancer?  I think a lot.  Despite the complete lack of information that any of Brian’s doctors have been able to provide in the way of nutrition, there is quite a bit of research that indicates that cancer feeds on sugar.  Here are a couple of good articles for those among you who are interested.  There is also a lot of info out there about the connection between gluten, sugar, and other disorders…

Cancer’s Sweet Tooth

The Definitive Guide to Sugar

What Has Brian Been Up To?

Brian nas only a couple of days left in Ohio and then he will be heading home to NC.  I think it’s been a good couple of weeks for both of us.  If rather uneventful on my end.

His flight up to Ohio was interrupted by hurricane Lee (I think it was Lee)  delayed and cancelled flights all afternoon long.  He was supposed to get in to Columbus at 6pm and ended up getting in around midnight.  Then still having the hour drive back to Wilmington.  Made for a very long day which caused Brian to sleep through his first day in Ohio!  Too much crazy air travel makes anyone exhausted.

His first big accomplishment was going grocery shopping.  I don’t know why this was a big accomplishment (except perhaps the fear that the Wal-Mart and Kroger in Wilmington were not going to be vegan friendly).  But he was very relieved when he got back from grocery shopping and realized that he wasn’t going to starve.  And it sounds like they’ve been having a little bit of fun in the cooking department at Danny and Kays.  Trying brand new things (like stir-fry) and learning where the hidden dairy is in packaged food.  Tonight they are having a weenie roast and s’mores.  So I’m betting tonight’s lesson is all about gelatin.  Animal skin and animal bones.  Good times.

Brian made it to Columbus, Cincinnati, Athens, and Kent.  I think the drive to and from Kent was a little much and he’s having some breakthrough pain that he’s trying to get under control, but I know he’s glad that he got to see everyone.  I won’t try to relay the details of those evenings and afternoons.  I gather there was a lot of reminiscing and a lot of laughing.

Today there is a soccer game for Brian’s niece Lily and maybe church.  Well, there is definitely church, not maybe.  The maybe part will be whether Brian is up to going.  He’s got to get his meds right again.  He mentioned something about some joint pain last night.  Hopefully we can get the inflammation down with his diet before it gets really bad.  But this will require him to eat a lot of  VEGETABLES.  So I won’t hold my breath!

As for me, I’m having coffee with a friend this morning and then relaxing the afternoon away.  I movie marathon-ed the four Die Hard movies and now I’m on movie #6 of the Star Treks.  Lot’s of popcorn has been consumed.  Not much reading this weekend, but I just started a new one on Thursday.  My goal is to read 40 books in 2011.  I’ve finished 31 so far, but it’s going to be very tight to finish.  I read all the short books already!  Now all I’ve got left in my stack are the epics and the one’s with itty bitty print!

Have a good Sunday everyone!

Dear Brian,

How’s Brian Doing?

Such a complex question.

These days, the short answer is “better.”  “The medicine he started this summer seems to be working and physically he’s not in much pain.”  That’s about the extent of it.  Sometimes (depending on who it is) I’ll throw in something about Brian not going back to work and applying for long term disability.  Usually I just wrap it up with “thanks for asking.”

This is all accurate and factual, but it doesn’t get at how he’s really doing.  How we’re doing.  What life is like with cancer.

We’re all going to die.  Another fact.  It’s also true that none of us knows when or how.  We’re all aware that tomorrow is a gift not a guarantee and that when we wake up each morning we have no certainty that we’ll be laying our heads back down there at the end of the day.  But, we also all live our lives with many assumptions.  We assume we will be seeing our pillows at the end of the day and we assume that we’ll be waking up and going to bed in this manner for a long time.  Years and years.  That assumption is pretty ingrained into the fabric of our lives.

We gave Dr. C the paperwork for the long term disability folks and asked her to send it on to the insurance company and to send us a copy (for when the insurance copy loses it or says they never got it or says they are missing page four or whatever).  Brian happened to be looking through it and he noticed the question “prognosis or likelihood of recovery.”  Dr. C wrote “poor.”

Can you imagine what it is like to see that in writing?  To pick up a piece of paper and see that your chances of surviving are poor?  Even though you know it’s not good and you’ve had many conversations with health care providers and loved ones about that same fact, to read it and have it put down in print for a third party to use to make decisions about your future?  It’s a shock and a blow.  No denying it.  No ignoring it.

Having cancer and a terribly prognosis doesn’t allow you to maintain that assumption that you’ll be seeing your pillow every morning and night for years and years.  That whole thing about not knowing when or how you’ll die is stripped away.  It’s scary to say the least and it’s relentless.   It’s very real.  It’s very heavy.  It’s every waking moment and that bastard cancer even finds its way in to your dreams.  There is no peace even in sleep.

So to answer the question, “how is Brian doing” is difficult.  Yes, he’s out of physical pain right now.  Yes, it was the worst spring and summer ever but we’ve weathered it.  Yes, he’s trending in the right direction.  But he’s facing down his mortality every day while simultaneously trying to live his life the best that he can.  That is a hard job.  An impossible job.