Tuesday, December 28, 2010

Sh*t my husband says...with short term memory loss

So today is a much better day and I will embrace all the good things I can! Chris is much more alert today and his memory is better, but not completely there yet.  His long-term memory seems intact, but his short term memory is still failing a bit.  They say this can just be an effect of the trauma and the lack of oxygen to his brain during the cardiac arrest so I'm focused on tomorrow being an improvement over today.  They are going to do a brain MRI tonight or tomorrow to check it out along with some hand tremors he has.

One thing that is completely intact is his humor!  As I mentioned in yesterday's post, it was a bit like living the same 10 minutes over and over.  He had absolutely no ability to create new memories so he'd ask how he got here or where he was and we'd tell him, and then 5 or 10 minutes later he'd be asking the same thing.  But, this is Chris we're talking about...Mr. Sense of Humor!  I think even though he didn't remember anything somewhere deep down inside his subconscious he knew he needed to make us laugh.  And laugh we did.  We laughed so much that at some point his daughter, Julia, and I decided we had to start writing some of it down.  I knew I would only post this if I felt his memory issues would be a distant memory for us in the future, and I am confident that's just what it will be.  So, here's some of the funny stuff he said yesterday...a day he does not remember at all and a day I will never forget but wish I could.

He frequently would look at me with great concern and say something like "Where am I?" or "How did I get here?"  Sometimes I would respond with "Do you know why you are here?" so that I could test where his memory was at.  Here are some of his answers:

"I'm pregnant" - to which we all had a good laugh trying to figure out who the father was.
"I'm interviewing to be the director of the hospital here."

Sometimes when he'd ask where he was or what he was doing here, I would tell him that one of the chemo drugs caused him to have a cardiac arrest and explain the whole story about Kelsey doing CPR and his heart getting shocked by the paramedics.  He frequently would look at me and say "I got paddled?" with an evil grin.  Childish kiddie humor, I know - but that's our Chris!

Another time he said "They did the paddles? Wow, I'm just checking off all my hospital bucket list items aren't I?"

One time when I told him about the CPR by Kelsey he said "I preferred the paddling!"

Some of his reactions to her saving his life are:
"OH...that was nice of her."
"Oh great, now I owe her..." (with a cheesy grin and sarcastic tone)

When he looked at the tape on his hand that covered one of his IVs he said "this looks like overdone chicken"

Some of his reactions to being told he'd had heart attack:
"so I coded?  cool!  Did they said 'CLEAR'?"  (He watches House too much!)
"Heart attacks that don't kill you are the best kind to have."

Out of the blue he looked at the TV and said "oh that's a tv!"  I said "as opposed to what?"  he said "Scrap metal"

Some other random things he said:
"Are we in St. Mary's?  I just didn't want any of those Methodists working on me!"
"I think you two are having more fun than I am" (when writing this stuff down and laughing)
"Were they able to alleviate my symptoms?"  I asked "What symptoms?" he responded "Laying in bed."

"I wonder how long this procedure will take?" (Most of the day yesterday he assumed he was in the hospital due to his cancer.)
The best one, I think, was this little red light that emanated from his finger where they had the pulsox attached.  He would look at it over and over - usually followed with the question of why am I here - and then one time he held it out as in the movie ET and said in a very ETish voice "Elllllliiiiiooooooooot!"  And anyone who's seen the movie will know exactly what I mean!

Monday, December 27, 2010

Just a little speed bump on the road to cancer freedom

Chris's second round of chemo has not gone quite as well as the first! He had chemo on Thursday.  Everything seemed pretty much like the last time with two exceptions.  Last time he had EXTREME fatigue to the point where he could hardly get out of bed for over 24 hours.  This time, he was able to be up and interact with us more than last time - he didn't have the fatigue. I found out today that is because they reduced the amount of the 5FU drug that he gets in his chemo - which is what was causing the fatigue.

The other difference was that this time he had some chest tightening and difficulty breathing on Friday night.  I know...classic symptoms, right?  Well when you're in chemo everything is different.  He'd had tightening in other muscles, like his jaw and his extremities, so we both thought it was just yet another symptom.  By Saturday, he was feeling a little better and able to enjoy Christmas dinner with us.  He slept better on Saturday night too.  So, imagine my shock when he got up on Sunday morning, took the dog for a walk, and then came back in and laid on the couch where he had a heart attack out of the blue.

Elise and my mom were upstairs with me when it happened.  It looked like a seizure to us at first.  Elise was VERY quick in thinking to run downstairs and get Kelsey who is CPR certified because she's in her senior year doing her nursing degree.  How fortunate we are that Elise was so quick on her feet and that Kelsey was here to save his life.  She sprang into action, she knew all the right things to do, and she kept his heart pumping until the first policeman arrived who brought with him an AED (automated external defibrillator).  They put it on his chest and the machine said "Shock Advised, stand clear!"

It was all very frightening to watch.  Kelsey was so calm under the pressure while I crumbled watching my husband helpless on the floor turning crimson, then purple, and then ashen white.  I stood in shock and disbelief as I thought I was watching my husband die right there on my living room floor.

They got him off the ventilator last night, but he still wasn't conscious when I went home to bed.  When I came in this morning, he was alert but I learned quickly that his short term memory is gone.  They say it's pretty common and not to worry yet. It's pretty hard not to worry when you're living the movie Groundhog Day.  If you haven't seen it, you should.  It's very funny. Bill Murray as a TV reporter re-living Groundhog's day over and over and over again.  Every 10-15 minutes Chris would wake up and look at me with such surprise in his eyes and say "where am I?" or "Am I in the hospital?" or some other comment like that.  The first few times I'd tell him what happened and he'd say "I had a heart attack?"  It was the same thing over and over.  It still is, but the girls and I have found little ways to get a laugh out of it.  Sometimes he'd ask what he's doing here and i would say "What do you remember?" or "Do you know why you're here?"  Most often he'll respond with something that indicates he thinks he's here for some procedure that has to do with the cancer.  But the best response we've gotten so far was "I'm pregnant!"  We had a good laugh trying to figure out who the father is!!!

So, you can see he hasn't lost his sense of humor so his brain must not have been deprived of oxygen for very long because wit like his requires lots of fuel!  His long term memory is also good.  He was able to tell us what month and year it is, although he wasn't sure of the day...but hey...he just lost an entire day so who can blame him for that?

One other funny thing I have to tell you about before I sign off.  When I got home last night Kaden (my 4 1/2 year old grandson) kept talking about Papa's soldiers.  Chris is "Papa" to Kaden, just in case you're wondering.  Everyone thought he meant all the police and paramedics that came were his soldiers, but we kept Kaden downstairs and he never saw any of it. Papa's soldiers - what the heck!  Well, we finally figured it out when Kelsey retold the events from her point of view and told how Elise barged into their bedroom and said Chris was having a seizure!  Seizure = Soldiers!!! 

So, we're on the road to recovery now.  I am keeping a positive outlook that his memory will repair itself and he'll be back to normal in no time.  I'm thinking they probably won't be giving him the 5FU drug anymore, so maybe we'll be trying a new cocktail for the next chemo.  Who knows?  The only thing that's certain now in our life is uncertainty...

Thank you all again for your well wishes, it's so meaningful to us - even if he can't remember them right now!  :)

Julia (and Chris)

Sunday, December 26, 2010

Post Christmas hospital blues

Just a quick note to update everyone. Please send positive energy our way. Chris had a heart attack this morning. I am thankful for my daughter Elise who immediately ran and got my other daughter Kelsey who is a senior doing her nursing degree and consequently is CPR certified. She started CPR and I called 911. Lots of shocks and an angiogram later and all we know is that this was probably a side effect of one of the chemo drugs he's on. More later. I just wanted to send out a call for positive energy!

Friday, December 24, 2010

The Big C...(Christmas)

I love Christmas.  Or, at least, I used to love Christmas.  This year, has been different - understandably so.  When everyone else was running around in holiday cheer, I was trying to figure out what there is to be cheerful about.

And then a couple of days ago someone asked me why I even celebrate Christmas.  I am Unitarian Universalist (a group that does generally celebrate Christmas), but this person has talked to me many times before about my spiritual beliefs and she knows that many of my beliefs are based in Buddhism.  So - the question didn't surprise me much since I'm sure she doesn't have a good understanding of what being UU is all about as it relates to Christmas.  I could have told her that Unitarian Universalism was founded in Judeo-Christian traditions and left it at that, but that wouldn't have answered her specific question.

I'm grateful, however for the question - it was an unknowing gift from her to me -  because in answering the question, I reclaimed my joy of Christmas. My answer was simply that I love to celebrate the man Jesus was because of the ideals for which he stood. I try to live my life by the simple lessons he taught. It's all about love.  Every lesson he taught was founded in the concept of love. Gratitude comes from a place of love.  Compassion (a very Buddhist concept) is all founded in love.  Charity...springs from love.  Kindness...comes from love. The first "tenet" of my UU faith is a "belief in the inherent dignity and worth of every human being" - this, too, is based in love. You can see Jesus's message, and indeed the message of so many great leaders, is based in love.

So, as I endeavor to practice mindfulness while Chris and I journey this new path set before us, I must remember to hold on to these concepts and not allow the cancer to rule my life.  I must mindfully focus my thoughts to the positive, and what more joyous way to do that than to celebrate Christmas and all the love that surrounds us each and every day.

Speaking of that. Chris has been amazing. He's teaching me many lessons already on this journey, from his consistent "it is what it is" mentality and resolve to do whatever it takes to beat this thing, to his humor that has not waned one iota during the past month. He has a fantastic attitude, and the quiet strength I always loved about him will carry us both through this.

Buddha said "All that we are is the result of what we have thought."  It's a good thing Chris's thoughts are focused on beating this and not wallowing in it.  There's lesson number one he's taught me.  No wallowing!  I think I was headed there, but my friend's innocent question and my husbands quiet resolve helped me focus my spirit to where it needs to be.

Just a quick update for those of you who don't come here to read my musings, but want status updates on Chris...he had his second round of chemo yesterday.  Everything went well. Some of the side effects that he felt the first time around have this time come a little quicker and stronger.  Most notably the cold sensitivity. For any of you that know Chris, you know he has a real sweet tooth.  So, to see him try an ice cream sandwich yesterday and then throw most of it away, you know it must be seriously annoying! :)  He said he could hardly taste it, and it just made his mouth tingle.  Last time, he was still able to eat cold things - not this time around.  He even had to drink his milk warm. Fortunately, that side effect is just annoying.  I hope he avoids the nausea again this time around.

Well, it's snowing again.  On his first chemo weekend we had a massive snowfall of about 18 inches.  I snow blowed for hours.  This snowfall is expected to be only about 3-5 inches.  I can handle that with my eyes closed!  Actually, I can't wait to get out in it and start blowing it :)

I wish you all a very merry and blessed Christmas!

Julia (and Chris)

Tuesday, December 21, 2010

A busy week - or - Chemo for Christmas

I now know how I reacted to the first chemo treatment, and am wondering if the same thing will happen this time. I expect it will not be that different, though it may be a bit better. With treatments every two weeks or so, I'm finding only about a day and a half of being really out of it. Fortunately for me it is more fatigue than nausea. Sleeping is the easiest was to push through the ill effects!

Last time I had chemo on Friday and felt fine. I had the pump hooked up when I left, continuing treatment for another 48 hours. Saturday I felt ok as well. Maybe a bit tired, but no big deal. It was the day of the snow storm, and I was out snowblowing and driving around. No problems, but I did probably overexert. That won't happen this time, and that may make things better this time. Sunday I was out of it - major fatigue. I spent most of the day in bed, on the sofa, trying to be part of things, but generally failing.

Monday was a somewhat groggy day, but much better. Tuesday was the first day I drove around, and things kept getting better each day.

So, this week I pick up my daughter Julia tomorrow the 22nd. On the 23rd I will have my second chemo treatment. My in-laws arrive on the 24th, with more friends and family coming for dinner on Christmas. But if the pattern holds, the 25th is the day I'll be most out of it - in bed and totally fatigued. Oh well... It will still be a great party, and I'll enjoy what I can of it!

This cycle should repeat every two weeks or so. After six treatments, in mid-February, we will rescan and see if the tumors have gotten bigger, smaller, or stayed the same. Then we discuss the next steps. I may not have much to post until then. Of course if there is news I will share it with friends and family through phone calls and this blog.

And I want to thank everyone for the offers of assistance over the last weeks. It seems like everyone likes to snowblow! Rest assured we will take people up on their kind offers when we need help.

Happy Holidays!
Chris and Julia

Sunday, December 12, 2010

The New Normal

As you may have already read, Chris had his first chemo treatment on Friday afternoon.  They pumped oodles of poison into him, and then sent him home with a pump and a bag of more poison to be delivered over the following 48 hours. Not fun!  He tolerated it all pretty well...until today.  The side effects they warned us about hit him pretty hard.  He had a little nausea, but mostly he's had extreme fatigue and no appetite.  He's pretty much spent the day in bed.

And what a day it was!  We had quite a storm roll through the region Saturday that dumped somewhere between 16-20 inches of the white stuff on us. It was my turn today to repay Chris for all his wonderful care he gave me when I had my hip replaced last year.  And thankful I am today that I had it done last year, it made 4 hours of snowblowing do-able! 

At a time when I feel so helpless with no control over this situation, being able to get out and do the snowblowing so that Chris could stay in bed helped me to feel a little more in control, even if it was a false sense of control, it was nice for a little while.

The best part of the day was when I got to remove the pump of poison from his chest.  He is no longer tethered to the fanny pack, and I'm sure he will bounce back to normal in the next day or two. Normal...there's an interesting word.  I think this is the new normal for us for a while.  He's going to feel crappy for a day or two after each treatment, and we will adjust accordingly.  I just wish Mother Nature could adjust accordingly as well!  :)

Cancer sucks, but Chris is amazing...his courage through all this is inspiring.  And you all are amazing, and I thank you all for your love, support, unsolicited hugs, and healing thoughts and prayers. 

Julia (and Chris)

Saturday, December 11, 2010

The first Chermo treatment - or - "If You Poison Us, Do We Not Die?"

The quote in the title of this blog, from The Merchant of Venice, addresses something I've heard a number of times in the last few weeks about chemo. Yes, the cocktail of drugs given in any chemo therapy contains mainly poison, but it's really not as bad as that sounds. While doctors cannot yet give a drug that can distinguish healthy cells from cancer cells, they can give toxins that do much less harm to mature cells, but target recently divided early development cells. And that is what most cancer cells do all the time. Unfortunately some other cells do that as well, leading to the well known side effects. Hair cells are constantly growing (baldness, no biggie for me if it happens, though they say this regiment of drugs does not generally do that), some stomach and intestinal cells are constantly regenerating (nausea), bone marrow constantly makes blood cells (anemia and fatigue), to name a few. What really dies in the poison of chemo, or what should die, are the cells I really don't want!

Well, I'm pleased to say the first treatment went well, or more accurately is going well. I had no bad reactions to the drugs during four hours of instruction and drug administering in the clinic yesterday. I left with a pump that, for 46 hours, will administer one more drug while I go about my 'normal' weekend. A brutal storm is going to make this anything but normal. Events have been canceled already, but we will go get a tree this morning! So far no real nausea or fatigue. No feeling bad, no pain other than the discomfort of the port.

Next time they will be able to administer some drugs more quickly because they do not have to monitor for a reaction or go thru all the education and explanation. The process will be around 2 1/2 hours.

The next treatment is Dec 23rd, so I won't really have much news to report until then. Julia, my daughter, will be up visiting from Texas, so she will get to visit and see some of the whole process. I may make a post between now and then, just to say hello and happy holidays.

Take care, stay warm if you're up north, and enjoy...

Chris and Julia

Friday, December 10, 2010

Getting on to the real treatment - or - I like facebook pokes better than real ones!

So far this week all the prep work has been done. I've attended a number of educational sessions, something Mayo does really well (like most everything else. If they completely eliminate patient waiting they will be pretty much perfect... but still they are better than most there too). Then Wednesday I had a liver biopsy in three spots. It confirmed the cancer in the liver is the same as the one in the colon. That is good news. Had they been different then treatment and the overall prognosis would have been much rougher. I do like good news!

Yesterday I had a power port put in. I joke that it is my first Borg implant (Borg, for the non-science fiction fans, is a half biological - half mechanical form of life. Nice guys though, if you want to be assimilated into the Borg collective. I'm taking applications now...). That was a rather painful process. Not the procedure itself, but the fact that the anesthesia did not last eighteen hours was a problem. No, really it should not last that long, but I wish it had. The port is the 'central line' Julia posted a picture of earlier, but instead of terminating in some connectors outside the body, mine ends in a plastic / rubber type receptacle under my skin about two or three inches below my right shoulder bone. It will allow them to introduce chemo drugs and take blood samples without sticking me in the arm every time. and it can stay in indefinitely.

So I am ready for my first chemo today! Mike, a good family friend, will be keeping me company for the five hour procedure. I'll also have a book and an iTouch with music, games, and podcasts. It shouldn't be too bad, but I'm looking forward to the future sessions that will run only three hours. This weekend I'll blog about how the session went. I'm curious to see how I react the the chemo. It is not supposed to be as kick-ass as chemo for lung, breast, or pancreatic cancer. I probably won't even lose my hair (at least not more than I already have!)

Take care,
Chris and Julia

Monday, December 6, 2010

Once more into the breach - or - The week ahead

Today, Monday, is the first weekday in over a week without me seeing a doctor. That won't last long, as I have appointments scheduled for every day for the rest of the week. While I will post an update or two to document how some of these adventures go, I thought I'd set the stage for the upcoming festivities.

Tuesday is full, but pretty painless. I have three educational sessions. One is on care and use of the central line, which I just call a port. It's a very computer-like term. I was wondering today if they could someday install a USB type port into the brain, and we could download information as well as save and share it. But I digress... Another is a session on what you should know about Chemo treatments. And the third is a Q&A session on clinical research. Mayo is always doing research, and I'll avail myself of anything here that may be helpful.

Wednesday they do a liver biopsy. We want to be sure the tumors in the liver are the same as the ones in the colon. Odds are very strong that they are, and that's good. Two different cancers complicate things a great deal.

Thursday they put in the port. That will give a place to administer chemo drugs and take blood samples without jabbing and taxing the arm veins all the time.

And Friday is my first chemo treatment. It should last five hours, but subsequent treatments will only last three hours. I will need to wear a pump that will inject one other chemo drug thru the port for forty eight hours. Should make for an interesting weekend teaching at a church lock-in Saturday night and Sunday morning.

Speaking of that, through the last week I have received so much support, good wishes, prayers, positive thoughts, and caring from family and friends. My condition was announced at church last Sunday and the response was very supportive and welcomed. I am truly greatfull. Thanks again to all.

Chris and Julia

Friday, December 3, 2010

My first blog entry ever - or - Positive Thoughts

My wonderful wife Julia has updated everyone on the events of this week. It has been one day of news after another. Some has been good, most has not. But today I got the best news yet. The CT scans of my lungs were clear. The nagging cough I've had for a long time is attributable to other things.

There have been visits to lots of doctors, and two days and nights in the hospital this week. Through it all I guess I'm a bit surprised by how positive my attitude has been. I've been told by a number of doctors that this attitude will serve me well through the long treatment process. I hope they are right. I guess the things I feel I'm not good at I can get pretty down on myself for - but the things I'm good at I am confident about. One thing about which I have always been confident (sometimes Julia would say aggravatingly confident about) is my ability to stay well and / or get well. In this case, I'll be doing everything I can to follow my treatment path and get better. I suppose this will be harder than any illness before, but it can be done.

Let me leave you with this for today. One of my favorite comics, thanks to my daughter Julia who inherited my sense of humor, is xkcd. On the day the doctors confirmed cancer the following was posted on xkdc.com. Enjoy the coincidence, if you believe in coincidences (which I really don't).

Chris and Julia

Thursday, December 2, 2010

Our First Visit with Oncology

We met our oncology team today...they were really great.  I think I might have to get used to the mannerisms of the nurse, but I really liked the Doctor, she was great.

We got a mix of good and not so good news today, but I'll take any good I can!

First the not-so-good.  The liver has several lesions on it...many more than we had thought.  To me, it was a bit of a shock to see them all as they showed us the scan.  The cancer is also in the lymph nodes around that area, so that's not good either.  It is stage 4. 

They will do a liver biopsy next week to make sure that the cancer that's in the liver is the same cancer as in the colon and not some other cancer.  It makes a difference about what drug combinations if they're different cancers.  But odds are that it's all the same cancer.

When they do the liver biopsy, they will also put a central line in just under his skin in the chest which will feed into a vein.  This way they won't have to stick a needle in him every time they need to draw blood or give him a chemo treatment.

Last of the not-so-great news, and probably most disconcerting, is that Chris has had a persistent cough for several months now.  He saw an ENT about 6 months ago and they gave him prednosone and antibiotics to treat a chronic sinus infection.  However, the oncologist had them do a chest scan today on him as well to rule out the possibility that the cancer may also be in his lungs.  This is something that never occured to me and was quite shocking to us to consider.  We should learn the results of that tomorrow.

Ok, so, let's end this on a high note.  The good news is that of all the cancers, colon cancer responds the best to chemo.  Over the last couple days we've heard many stories of those who have survived a stage 4 cancer, so there is a lot to be positive about! He gets the central line put in on wednesday of next week and his first chemo is set to start on Friday the 10th. 

We remain optomistic and hopeful for the best outcome possible and are grateful to all our family and friends who are so supportive and wonderful.  Thank you for your healing energy...keep sending it!

Julia and Chris

Wednesday, December 1, 2010

Life's a journey...but this could be a rollercoaster!

It's time to resurrect this old blog with the purpose of keeping our family and friends informed of the latest happenings.  Chris and I both recognize that we have a long odyssey ahead of us, and we want our family and friends to be informed, but know how nearly impossible it is to call and email everyone.  So, we will both post to this blog as the story progresses.  Check back often, or better yet set up an RSS feed on your iGoogle page so that you are notified when a new posting happens.

On Thanksgiving day, 2010, Chris started to feel a mild bloating and pain in his abdomen.  It got steadily worse over the weekend and by Sunday he was in pretty substantial pain.  He went into his primary care doctor on Monday morning.  She ordered a CT scan which he did later that afternoon.  He came home and waited for a call...which he got about 3pm.  She said they found several masses on his colon and some spots on his liver and she was admitting him to the hospital immediately.

He called me at work to tell me so he came and got me, we packed his stuff and hurried on down to St. Mary's Hospital at Mayo Clinic.  We are so very fortunate to have a world-class medical institution in our own back yard!

We got him checked in, and they started poking him with all sorts of needles and tubes, the worst of which was an NG tube (Naso Gastric) to clear his stomach of fluid and pull gasses up.  All this was to prep for a colonoscopy the next day (Tuesday).  He had the colonoscopy and they took a biopsy and put a stent in to open the blockage.

Today we got the results of the biopsy which confirmed their suspicion that it is indeed cancer.  They said there is also swelling around the lymph nodes in that area.

This might sound silly, but one of the most disappointing things was this new diet he has to follow.  Because of the stent, there is a risk that material could get caught up in the stent and cause another blockage.  So, he has to eat a low residue diet.  It's incredibly restrictive, and exactly opposite the new diet I've been following for the last 3 months.  He basically can't have anything with fiber.  So, no veggies, no fruits, only fruit juice with no pulp.  Only soft enriched white bread, soft meats, and limited dairy.  Holy Cow!  We've been following a whole foods diet with great success over the last few months, so now he'll be doing his thing and I'll be doing mine.  Kind of a bummer!

Tomorrow we have an appointment with the oncologist and hope to learn a lot more, like what is the prognosis, what are the treatment options, and maybe get an understanding of what our life will be like in the future.

There's really nothing anyone can do at this point.  All we ask is that you send your positive energy and healing thoughts our way.  We are keeping our thoughts and discussions positive and are thankful for all the blessings we have in our life. We are grateful for so many friends and thank you for your love and concern.

Julia and Chris