Birthday

Brian’s birthday was a few weeks ago, on the 15th.  We don’t do a lot for birthday’s at our house, maybe a dinner out, a couple of gifts, a special dessert.  Nothing fancy.   We put all our efforts in to Christmas, which is my preference that Brian goes a long with I think.  But because we do Christmas so big we don’t celebrate Valentines, an anniversary,  or any of the national or religious holidays.  In fact, we tend (or try) to go for experiences over gifts at birthdays.

Over the years we have had varying degrees of success, as, I’m sure, is the case for most people.  A couple of years ago Brian got me the materials to make a hall tree out of an old door that we had propped up in the living room and had talked about converting for over two years.  The gift was the materials (bunch of wood and some nails – not so glamorous) but the experience was building the box and making the hall tree together.

A couple of years before that I got us tickets to see Jack Johnson in Raleigh.  It was a great show!  Another time, Brian got us a two-hour horse ride at a place called Dead Broke Farms in Durham.  The general consensus afterwards was that the one hour ride would have been better!  And despite our sore bums, we had a lot of fun.  Other years we’ve gotten each other little things that we’ve wanted, nothing special just things that we might have gotten for ourselves but it’s nice when someone else buys those things for you.

But this birthday was particularly hard for me.  During the normal period before a birthday when you’re thinking about a gift, we were right in the middle of some of the most pain and discomfort that Brian has been in the entire past year.  Hard to think about a birthday gift when you’re going to the doctor every other day and pumping someone full of pain meds to try to make it better.  Plus, though we didn’t talk about this, August being the one year mark of that horrible prognosis (that only 20% of people survive the first year of a stage 4 melanoma diagnosis) and simultaneously having him in all that pain was really doing a number on me.  For me, my worst nightmares seemed to be materializing.

So I didn’t get him anything.  I wasn’t able to think about celebrating, didn’t know if he was going to be getting out of bed again.  Didn’t know where we’d be the next day, let alone the next week or month.

I worried, and still worry, that it’s possible that Brian has had his last birthday.  He and I have talked about that and about how difficult that is.  We’re both very aware that while things are going ok today, that tomorrow could be very different.  I’ll keep repeating that neither of have given up and we both have a lot of hope but it’s not in my nature to not think about something just because it’s difficult or uncertain.  I think about everything, ad nauseam.  And I worry.  That’s me.

And this month I struggled with – what do you get someone who may be having their last birthday?  And why on earth would you plan for that?  You know?  Like, maybe it is, maybe it isn’t, but just act normal.  Right?  “Uh, Brian I got you an amazing trip to coincidentally see all the things you’ve always wanted to but haven’t been able to.  No reason.”  Why do that?  Don’t do that.  But then the opposite is also true.  It’s possibly your last birthday…. Uh, here’s a travel mug and a car pillow.  LOL.  I didn’t know what to do or how to go about it.  I had trouble talking about it.  So I spent the month not thinking about it.  Or, more accurately, thinking, “I should figure that out soon.”

Brian’s family came down the weekend of his birthday (which was on a Monday).  Lot’s of cards and gifts and well wishes brought down from those in Ohio who couldn’t come down.  Good vegan cake was eaten by all (some more than others – two days later I ended up eating the last piece instead of saving it for Brian.  Boo on me.  But he wasn’t eating.  What was I going to do, waste a piece of cake?).  I went to work that Monday with very little ideas.  I was almost banking on the fact that maybe he wouldn’t notice I didn’t get him anything.

By chance (fate/universe intervention/God – you call it) I happened upon what struck me as the perfect experience for this year.  A sunrise balloon ride over the Blue Ridge Mountains in Asheville, the place that will always feel like home.  Perfect.  So, the first weekend in October we’re traveling to the mountains, eating at a ton of great vegan friendly restaurants and waking up Sunday to watch the sun rise over the mountains while floating 2,000 feet in the air.  Regardless of what comes next – that will be a great experience for us.

Ohio

FROM NADIA:

Brian is heading to Ohio for a couple of weeks.  There are lots of family and friends in Ohio who are worried about him and who haven’t seen him in a while.  This will be a good chance for him to catch up with people while he’s feeling relatively good.  So all you Ohioans up there, clear some time and book early… I’m thinking he’s going to be popular.

He continues to feel pretty good, with little pain.  The current pain routine, with the increased dosage on the patch and no ibuprofen, seems to be working.  He is sleeping less, somewhere around 15-18 hours a day.

I am doing less well and need to do something about that.  It’s interesting to me how education/information isn’t enough to motivate us to action.  I have a degree in counseling and my job focuses on mental health.  I am familiar with many of the common symptoms as well as many of the common corrective steps to many mental health disorders.  But I do nothing to apply them to myself or get myself help.  And I’m not beating myself up (truly), I know that when you are depressed, doing anything about it is absolutely the hardest thing.  I mean, you’re depressed.  Of course you aren’t going to go running out into life with your five-point action plan for getting better.  You’ll suffer endlessly before you are actually able to do anything about it.

I haven’t been grocery shopping in two weeks (because I’m (drumroll) depressed).  My goal today is to get that done.  I need to buy some actual vegetables.  I’ve been eating cereal and pb&j all week (because I’m….depressed) and I need to feed myself better.  My goal for the week is to cook again.  I haven’t cooked for many weeks.  Sheesh.  I’m realizing I’ve been really struggling for a while. I was focusing on how bad this past week was, but I’ve been simmering for a while now.

Fingers crossed that this is the week I motivate to do something about it.

Whoa.

FROM BRIAN

One of the nice things about having a blog is that people respond to what they’ve read through comments they leave for us.  As you can imagine these comments are very supportive and encouraging and the majority of them are addressed to me since I am the one with the cancer. Which is unfortunate, because one of the things we are going find whether I live or die from this is that the real hero of the story isn’t me at all, but Nadia.

To be quite honest I get to sleep through three quarters of this disease.  And in many ways I’m a shut-in because I’m not supposed to drive much (if at all).  That means Nadia has to do everything to keep the household running, take care of her ailing mother, and look after me.

Recently an old friend of mine dropped a note to Nadia saying how glad he was she was there for me because I am one of the nicest people he knows.

Normally this kind of comment would make me smile, but not this week.  This week I wasn’t very nice to my wife.  I lied to her.  I won’t say what I lied about so there is no debate about the proportional size of the lie; that doesn’t matter.  What matters is I deliberately lied and it hurt her deeply.

This is not the kind of thing I expected to be talking about when we started this blog.  It’s the kind of conversation you have in private and not with a hundred people reading about it, but Nadia has not wanted to talk to me much this week in person.  I’ll reiterate here what I have been able to say which is that “I’m sorry and I never would do anything to deliberately hurt you.”

There are a lot of high emotions in the Collins/Alamo household this week.  Fortunately, there is some catharsis in writing about it.  Sharing it on the blog…well, we’ll see how that goes.

In other news, Nadia was able to update you (see the next entry) on the results of the colonoscopy and upper GI endoscopy, which were positive from what I can tell.  As for the procedure itself, I did not feel a thing and it was done pretty quickly.

The prep is the worst part.  I had to drink four liters of this nasty solution that tasted salty going in and milky going down.  I had not eaten much in the week leading up to the test so I figured I would not have that much to clear out of my colon.  Boy, was I wrong.  When it first kicked in and I sat down to go the bathroom I was like, “Whoa.  That was different.”  I can’t really describe it other than it was like someone flushed me.  Whoosh!

All in all, my pain has been very low to non-existent this week and I’ve been getting out of bed earlier.  I’m looking forward to the weekend with Nadia home from work so we can spend some quality time together.

Brian

Avoidance

I’ve been intentionally avoiding the blog this week. It has been a difficult week for me and I have been avoiding my life, in addition to my blog.  Which brings up avoidance reason number one:

My blog.  I started getting requests.  I started getting requests to write about certain things or not write about certain things.  That was tough for me.  When does the blog start to belong more to the readers than the writer?  I don’t necessarily put a whole lot of forethought in to what I write about, I generally prefer to write about what is concerning me at the moment.  Whatever it is I need to process is generally what comes out.  So if I can’t write about this, or you, or need to write about this, or you, how do I maintain one of the only “soft” spaces I have in my life right now?

This blog was originally supposed to be for Brian and I to share and talk to each other. I wanted to have this to look back on and to capture what he was feeling and thinking.  You, the reader, getting information simultaneously was merely a bonus (for us and you).  But Brian isn’t talking.  So this has become a space for me to express fears and share a burden that (as I have come to realize this week) is crippling me.

Which brings me to avoidance reason number two: something happened this week that hurt my feelings terribly, embarrassed me, and made me feel taken for granted.  I’m not mentioning it now, because this is not yet the time (I’m still avoiding, this is merely a toe dip in the water of my life – I’m going way inland again when I’m done typing).  But this thing that happened made me realize how tired I am.  And I don’t just mean, “I haven’t slept well in over two weeks” kind of tired.  I mean emotionally DRIED UP.

My entire life has been about Brian and cancer for the last seven months solid.  Even work is about Brian and cancer as I am always needing to arrange to be away from work, or constantly stressed about job security because I’m never there.  I have been running a marathon at mid-distance speed. Earlier this week when everything blew up, something cracked and I became too tired to care about Brian and cancer right now.  I found that I was sucked dry of concern and worry and motivation.

That I needed a break became so evident to me that I wondered how I’d made it this far.  So I went to bed. I woke up at 6:15 every morning, got home at 5:45 every evening and went straight to bed.  Getting up only when the alarm went off.  All week.  It hasn’t helped, LOL, but I guess I can’t expect four days to erase seven months of all of this.  And obviously, this is another extreme.  I can no more “not care” about my life (which includes Brian and cancer) than I can keep going at this “taking care of everything” pace.  Some peace will have to be found, some middle ground.  Some conversations will have to happen.

Reason number three is much less dramatic.  It is opening week at Carolina and I simply haven’t had the brain power for anything else.  The drama and trauma of student life is simply utilizing all my reserves.  They are wearing me down!  This combined with reasons one and two, were enough to keep me away.

As for the update which I have deprived you of:

• The colonoscopy went well.  They did find a small something or other which they took a piece of to biopsy.  The doctor said that, in anyone else, he would not have bothered, but given Brian’s history, it seemed important.  My take on all that was that they did not find anything that would necessitate a surgery to remove the tumor(s) and reduce the bowels.  Fourth surgery, currently avoided.
• The GI’s folks theory about why Brian was losing blood was the excessive amounts of pills he’s been taken, particularly the ibuprofen.   They took pictures of scarring that is consistent with that kind of thing and said that it would likely go away if Brian stopped taking ibuprofen.  Easy enough.  Check.
• The biopsy was due back before 5p today.  I expect that if we don’t hear from Dr. C tomorrow, that all is well.  The rest of the colon and stomach looked fine.  No issues or concerns.
• The morning appointment with Dr. C went well.  Nothing really noteworthy.  We gave her the long-term disability paperwork, we scheduled to see her in two weeks, Brian’s blood work that morning looked fine and normal.  Brian had lost another five pounds since the week before.  Making it 10 pounds in 14 days.
• The one great piece of news is that she told us that the drug companies (specifically Genetech who makes BRAF) will often not charge the patient his/her co-pay for such a pricey drug.  They figure that the average person can’t pay that.  True.  Which means Genetech gets no money.  Poor Genetech.  So what they do, is charge the insurance companies their 75% or 80% and then waive the 25% co-pay from the patient.  So, right now, it seems possible that we may have to pay either no or a very “normal” amount of money for the BRAF. Yippee.
• This, unfortunately, doesn’t mean our money worries are over, it just means they are no longer insurmountable.  The other thing we’ve officially decided is that Brian will not be going back to work.  Assuming he gets approved, he will be taking long-term disability through Elon.  So he’ll get 70% of his income, plus lose his insurance coverage.  So our household will take two cuts, one in Brian’s income and one in mine because we will have a much higher insurance premium once I start to cover both of us.  It’s scary to think about Brian not going back to work, but I think we both agree it’s a good decision.  I think with the news about the BRAF co-pay and refinancing the house (which we did) will make it all manageable.

Next up?  A visit to SC next Wednesday.  This will be our second to last.  Anna is going to give us one more month of the drug for free and we’ll go one more time for our final wrap up.  The week after that we go back to Dr. C (Tuesday after labor day).  Assuming there is no follow-up needed from the colonoscopy, and assuming the gout that isn’t gout doesn’t come back, and assuming his vertebrae doesn’t get anymore crushed, and assuming his iron level doesn’t drop again, and assuming nothing NEW happens, we should be good for a little while.

Pray for THAT.

It’s Working a Little

Using our new standard of “better,”  today was not a bad day.  Brian got up around 6p and took a shower (second one this week – WOO HOO), and then he joined me on the porch just as a rainstorm passed through.  There was a really nice cool breeze and Brian said that it felt good in his bones to be outside and feel the breeze.

We had a light dinner, veggie dogs and soup.  Brian had TWO veggie dogs and a little bowl of ice cream for dessert.  We watched a few episodes of Scrubs (we’re on season three) and afterward Brian helped me fold laundry.  We watched a little more DVD and sat and talked about the day I had and all the things he needs to do tomorrow (surprisingly a lot).  Now it’s almost 10p, after he takes the evening dose of BRAF he’ll go back to bed and hopefully get a good nights sleep – he did not sleep well last night.

And even though he was only awake for 4 hours today, he was able to shower, eat, stand to fold laundry, and sit up and chat with me.  Four things he would not have been able to do two days ago.  The BRAF is helping.  He is still in pain and we haven’t noticed the tumor on his head get smaller, but once again we are moving in the right direction.  Crazy roller coaster.

Tomorrow he has to go to the bank in the morning to complete the refinancing application on our mortgage.  Bturley is going to pick him up and take him, so I’m sure it will not be just a ride to the bank, but an adventure as well.  We lost the paperwork that the mortgage lady gave us that told us what he needed to bring back to complete the app, so we’re just going on memory and hoping that we remembered everything we needed.  I’m not able to go because I need to log some hours at work.  They like for me to show up every once in a while!

Also tomorrow Brian has to start drinking the contrast/laxative/nasty juice for the colonoscopy on Tuesday afternoon.  The prescription came in a gallon jug that somehow manages to look BIGGER than a gallon of milk which only ups the intimidation factor after hearing the stories from Danny about what it will do to you.  Danny told Brian to “just take it with you to the bathroom and start drinking it there.”  He also told Brian not to plan on doing anything Monday night except being in the bathroom.  He has to drink half to three-quarters starting tomorrow at 5p and then the rest Tuesday morning.

It was a good day for me.  Not only was Brian a baby step better, but I had a nice afternoon with Niki.  It was a relief to talk.  I feel better.  Calmer. The afternoon hit the spot.  Bring on tomorrow.

I Don’t Know What to Feel Right Now

It’s been a tough week and I don’t know how to feel about it.  Brian is still in so much pain.  Lying still in bed is excruciating.  Forget about turning over, sitting up, going to the bathroom.  I can’t stand to watch him be in that much pain.  There is nothing that can be done except wait it out and hope that it gets better.

And that begs the question, what is better?  At this point I mean.  Have our standards shrunk to “sitting up in bed for 20 minutes” is a good day?  Do I hope that maybe one day Brian and I could go to a restaurant together again?  Do I hope that Brian can just be comfortable and get uninterrupted sleep?  Do I hope that Brian would have two days where he ate two full meals each day?  What is better?  And if your standards are so low, is better really relevant?

The summer of 2009 I was working with this Elon parent who was upset about his daughters housing assignment.  They had gotten the roommates information and gone on to Facebook to look her up.  The roommate had identified as a cancer survivor and there was apparently a photo of her with no hair – probably taken during her treatment.  The dad was venting to me, demanding a room change, saying, “it’s not the girl, I’m sure she’s very nice.  But my daughter is 18 years old.  Having a roommate with cancer is just too much reality for her.  She’s only 18, she shouldn’t have to deal with that.”

I was talking to my counselor this morning and she was talking about how some people are in so much pain for so long that they feel that death is a friend.  I assured her that we were nowhere near that point or that way of thinking.  But it got me thinking.  Will that point come for Brian?  And if it does, how far away is it?  Maybe the relevant question is “how real does this get and can you be open and honest and loving with that much reality sucking the air out of you?”

I just don’t know how to feel.  I think that means I feel numb?  I don’t feel like we are close to the end, I don’t feel like I’ve given up, I have hope that BRAF will extend Brian’s life and improve the quality of his life.  But I also feel that this cancer is a pretty chronic state of affairs.  We don’t go five full days without going to the hospital.  Every time we go there is something else wrong.  The latest is a fractured vertebrae and possible bleeding in his intestines.

So maybe my hope and positive thinking is being cancelled out by all the bad news.  Leaving me in this zero stasis kind of zone.. or this, well, numb place.  I don’t feel excited by good news, I don’t feel depressed by bad news.  It is all simply news.  It is just new information.  It is just more pills to take, more time off work, more trips to the pharmacy, more precautions to watch out for, new standards of “better.”

When Brian was first sick  we were sticklers for information.  We would write down the location and size of each tumor, we would take notes on growth or shrinkage, we would leave the doctor’s office with all the information possible.  Now, I honestly couldn’t even tell you where all the cancer is.  In June when Dr. C told us it had moved to the liver, neither one of us asked, “how much, where, how many, how big?”  Nothing.  When they did the spinal MRI this week I didn’t ask to see it, didn’t ask how many tumors were there, where they were, what that meant.  I think that’s numbness, right?

Because it’s too much to track anymore and nothing changes our course of action.  Always forward, always doing everything possible, always accepting limitations with love and kindness and working around whatever we need to. If the numbness is helping me cope, then I guess I welcome it.  But it’s a hard place to live because it is so confusing.

 

Nightly Spewing of Facts

Here are today’s facts:

• Brian woke up in quiet a bit of pain this morning and it has continued to get worse.  He said it is just as bad as it was Tuesday morning when he was admitted.
• Anna from SC called this morning (she gets in to the office EARLY) and gave him the go ahead to start the BRAF again.  She said that she was going to set up a final wrap up appointment for us in SC in about two weeks, as that is when Dr. C will have the drug and will be able to dispense it for us.
• I was able to get Brian up this morning and we headed to the pharmacy and then the bank.
• We started the process of refinancing the house which will save us about $250 dollars a month.  The mortgage lady also told us that we were paying too much for our home owners insurance.  This afternoon I called them up and got them to take off about $170 of our annual premium.  I’d like to pretend that I was tough and that I broke them, but the dude pretty much just gave me $170 right off the top and I took it.  The mortgage lady also told us that the average length of time Burlington houses are on the market right now is about a year.
• I checked in with work this morning because I hadn’t spoken to any of them since Tuesday morning.  I’m going in for a half day tomorrow to get the essential stuff done and a few things prepped for next week.  UNC classes start Tuesday.
• Brian started to feel really badly right around noon so I dropped him off at home and continued running errands.  When I got back he wasn’t able to move.  We put a new patch on him, 70 units or cc’s or whatever – up from the 50 patch that he had been on.  He’s also been taking double the percoset today.  Not much has been helping.  Although around  4p he has able to settle and get a little comfortable.
• I ran over to the nursing home to see my mom.  Yesterday I got a call from them that she was refusing pills and refusing physical therapy and they were going to discharge her.  So I had to run over and get everything back on track.  The movers are coming on Saturday at 9am.  The storage unit has been procured, the last of the yard sale stuff has been brought here.  I think I am just about ready.
• Brian takes the evening dose of BRAF at 10pm and I’m hoping that by the end of the weekend there is a noticeable difference in his pain levels.  On the third day of the first cycle we noticed the tumor on his head was smaller, so it does work that fast.  I just hope it does this time as well.  I guess I better start calling it Zelboraf.
• No food was eaten today, but I’m going to try to make him have a glass of orange juice this evening with the nightly pills.  That will be about 90 calories to help with the iron pill.

I got quiet a bit done today.  Did a little work from home, refinanced the house, ran a couple of miles, put away several boxes of things I brought from my moms apartment.  Danny, Kay, and I had a nice dinner this evening.  Kay made a peach cobbler and it was really good.  Now I’ve got to pack up some things for tomorrow, get a lunch ready, and maybe put in a movie to rest and try to fall asleep.  We got the Last Emperor in the mail today.  Never seen it.   Hopefully it is not depressing.  Somebody stop me if it is!

Take care all –

BRAF Approved By the FDA Today

I’m about 15 minutes in to my afternoon conversation with Anna from SC and she casually says,

“Oh, by the way, the FDA approved the BRAF drug today.”

What?  It’s approved?  That’s great. Right?  Right?

So the breakdown of the good and the bad:

Good:  a very effective drug is approved and soon people who’s lives could be improved and extended will have access to this great drug.  They are close to having it approved in several other countries as well.

Good:  the drug should be manufactured and distributed by the end of October 2011

Good:  no more trips to South Carolina

Theoretically good:  once Dr. C can prescribe the drug (which won’t be until October), Brian can theoretically have radiation and the BRAF drug at the same time.  If needed.  So while it doesn’t help us in our current predicament (see below), if we are ever here again, this will no longer be a problem.

Bad:  the estimated cost for a one month supply of the BRAF (now called Zelboraf) is $9,400.

Bad:  see above one more time

Bad (until you read above again):  the co-pay on my insurance for Zelboraf is 25%.

Time is (not) on my side

Time seems interminable in a hospital.  Yet so much happens that telling you what happened an hour ago is so outdated as to not be worth typing.  I can’t decide if things are happening too fast or too slow or if time has nothing to do with it at all.

• This morning Brian got the news that the tumor was not in the spinal cord but only in the bone.  They took him down to get prepped to start radiation next week.
• I also spoke with Anna this morning.  She said that Brian was not able to continue the BRAF if he had surgery or was undergoing radiation.  The clinical study allows an 8 week window where a person can stop taking the BRAF to have surgery or radiation.  But after the 8 weeks, if you are not able to resume the BRAF, you’re out of the study.  No more of the only thing that is working to extend Brian’s life.  Since Brian has already been off the drug for 2 weeks, he actually would only have 6 weeks to complete the radiation before he got booted from the trial
• At some point this afternoon one of the med students on the team came in and wanted Anna’s contact info.  The UNC folks want to coordinate with the SC folks to see what is and is not possible.  I told her that I confirmed with Anna this morning that it isn’t possible to be on radiation and BRAF at the same time.

It was then that Brian told her that he didn’t want to begin radiation until he had consulted with Dr. C.  He and I both want to check in with her and get her opinion about what is the best step.  Our understanding is that the radiation, at this point in time, is mainly for pain control, and to prevent the tumor from continuing to grow to a dangerous point where it DOES start to compress the spinal cord.  But waiting 6 weeks to start back on the BRAF?  That is too long.  The tumor on his head is noticeably bigger, this tumor in his neck that is causing him pain, the continued fatigue… all of these things can be addressed with the BRAF.  We have evidence that it works.

Also, at the end of May Dr. C told us that if we didn’t get the cancer under control in the next few months, that Brian’s prognosis was bleak.  It’s been two and half months since she said that.  So right now is MISSION CRITICAL.  No time to waste with a therapy only addressing a few tumors in the neck bone.

And I want to take one more pause here to say that when I say “its working”  I mean that it’s extending his life.  It’s not a cure.

So we want Dr. C to weigh in and help us decide if radiation is the next best step or if we should do the BRAF for a month or two and then reevaluate.  Maybe at that time, he’d be in a better position to undergo radiation, or maybe at that time the BRAF would have eliminated the need for radiation.

The hang up is that Dr. C is in Philly today at a conference and the next time we can get in to see her is Tuesday.  Do you see what I mean?  All this is happening so fast that I can’t process it.  But it’s also going too slow because we have to wait almost a week to see Dr. C.  What do we do in the mean time?

Our plan is to email Dr. C and see if we can get her to weigh in that way.  When I talked to Anna a second time today, she said that this was a typical occurence of the study.  That people took breaks for radiation and/or that people put radiation on pause to see what the BRAF would do.  She said that she could get us ready to go again pretty soon after we made our decision.

Now we’re waiting on results from the 4p blood draw.  If the doctors like what they see, Brian will get discharged.  We could be heading home as early as 5:30 today.  Fingers crossed.

Killing Time at the Hospital

It’s interesting to me how much time we’ve spent in hospitals and how used to the routine you become.  You know that if you want to catch the doctor you have to get here at 6:30am and wait all morning.  You know that when they say, we’re starting your discharge papers that you have about six hours to kill.  You know that when the meal tray comes it isn’t going to be vegan and that someone is going to have to run down to the cafeteria and get a bagel with peanut butter.

And that is an interesting side note:  the amount of difficulty we’ve had getting vegan food in the hospital.  After requesting a vegan meal Brian has gotten everything from country fried steak to grilled cheese, to a steamed vegetable platter covered in butter and cheese.  He gets vegetable soup made with beef broth and I think an actual beef patty one time.  We’ve spent time in lots of different hospitals, from the local bare bones hospital, to the state of the art facilities, to the specialty clinics.  He’s stayed in the oncology ward, the trauma ICU, the surgical ward, and now the stroke ward of the neurosciences hospital.  No matter the place, it’s always an issue.  And my thing is this.  Yes, we’re in North Carolina, yes, vegetarian is better understood than vegan.

But 1.  This is a hospital.  Where people are sick.  Isn’t what they’re eating INTEGRAL to their recovery recuperation? Should it be this hard to get a vegetable not drowning in oil or butter?

And 2.  Don’t they deal with the widest variety of diets that you can imagine?  What about people with gluten intolerance or any dangerous food allergy (like nuts that can kill you), or lactose intolerance, or what about religious dietary needs.  People who don’t eat pork, people who keep kosher.  With all the diversity that comes through such a large place as a hospital, don’t they deal with this all the time?

But I digress.

It’s day two of the hospital stay.  I can recap yesterday pretty succinctly I think, but today there are more questions than answers right now. So to recap:

• We were scheduled to see the doctor and get a blood transfusion yesterday but Brian woke up with intolerable pain and couldn’t move.  We call the oncology doc on call and he recommended the ER right away.  He called back and suggested Brian change out his pain patch, give it a minute and see if that helped.  So we did that, waited until 9am, and nothing helped.  He wasn’t sure he could make it in.
• We got to the hospital about 10:30 and did the blood work first.  Also, when checking in, his vitals were good, but he had lost five pounds in the last seven days.  Usually between visits he’ll see a 1-3 pound drop, and sometimes even he’ll remain stable.  But five pounds in seven days is a lot.
• When Dr. C saw him he told her that he had felt no change since the infusion.  Still extremely tired, still same moderate levels of pain (until that morning).  She looked at his iron level and it was a 10.7.  No more danger zone.  Still not super, but way better than before the transfusion even.  She was pleased at the numbers.
• She did a physical exam and after about five minutes of looking at him she said she wanted him to check in to the hospital, get some pain control assistance, and have an MRI.  She was concerned that a tumor might be compressing his spinal cord.  She looked at some old scans and determined that the old shoulder pain he was having in April/May/June was really “reconstituted” pain from a neck tumor.
• They got him morphine, steroids, and saline right away.  They give steroids because sometimes that will assist in temporarily shrinking tumors and alleviating pain.  After three doses of morphine throughout the afternoon, he had no pain relief, but was able to sleep some.

We both slept, I got some coffee, read a little, cried a little.  Tried to figure out what this was.  I hate not being able to name things, to size them up and put them in the appropriate place.  Is this a crisis?  Is this something chronic?  Is this short-term? Is this long-term?  Is this the dark before the dawn?  Do I make light of this in conversation?  Do I make the effort to help people understand the gravity of the situation?  Or WHAT?  It gets scary and overwhelming.

About 4p he got a room up on the stroke floor. I was a little nervous because we haven’t been out of the safety net of “oncology” in a long time.  Not since the lung surgery in Sept 10.  So I was worried about the care and people not understanding how to help him.  But about 5p we got visits from three doctors on the oncology team (one from radiology) who spent an hour with him examining him, asking questions, placing orders, and explaining what might happen next.  So I felt better.

At some point in the afternoon, we got a call from SC to tell us that Brian was cleared to start the BRAF again.  Great news!  I was worried because they had left a message and so weren’t aware that he was in the hospital.  By the time I called back, they were gone for the day.  We called Danny and Kay to bring some PJ’s and the medicine and by the time they got here at 7:30p Brian was being wheeled out for the MRI.

He wasn’t back until 9:30p and he took his first dose of BRAF for the 2nd cycle.  We got him settled and headed home, winding up in bed about midnight.  Long day, considering that Brian woke me up to tell me about the pain at 6:40am.

The docs where going to look at the MRI overnight and in the AM and make some decisions.  As he didn’t have surgery in the middle of the night, there was obviously no threat to his spinal cord!  Yippee for small blessings.

I’m going to wrap up this post and start-up where I left off in the next post.  Thanks for checking in everyone!