Chapters

Amyloid

April 3rd 2007

jaynepike

George has an appointment with you this coming Monday and I wanted to share some concerns.  Over the last few months, George has been trying to increase his daily activities – he has been traveling with his boss to meet with clients (no physical labor) about once a week.  George has also been doing light work around the house – things like painting.

On those days, George is exhausted.  The minute he sits downs, he falls asleep and you can hear him breathe from across the room.  When going up stairs, his breathing is very labored.  It takes him a few days to bounce back to the point that he doesn’t need to nap during the day.  When I ask how he feels, George says he doesn’t seem to be getting enough oxygen.  Even tonight, George feels winded – no pain, but can’t breathe deeply enough.

We have been walking, but even on short walks (about 1/4 mile) on level surface, George will need to take a break.

I am very concerned about George returning to work.  I know that he is anxious to return but I also know that it’s not a yes or no decision.  For George, if he gets the OK to return to work with limitations (i.e. don’t lift anything over 15 pounds) – he will ignore those limitations and try to do everything that he was doing before.

At his last cardiology appointment, we had talked about cardiac rehab – George did discuss with his PCP, who was in favor.  Is this something that George should be doing before returning to work?

I am so worried that George will take on too much too soon and am looking forward to your evaluation and insight next week.

Amyloid, Boston Medical Center, Post Chemo & Stem Cell

November 27th 2006

jaynepike

Evaluation Day 1 – 11.27.06

My father passed away 28 years ago today – so for a big part of my life he has been the angel on my shoulder giving me guidance, hope and praise and more often than not, a kick in the pants.  You know, all the things a Pop is supposed to do.

So it is very fitting that Pop is with George and I today as we start the evaluation process all over again.

What do we know going into the evaluation –

Fact 1:  George’s amyloid is still active and the stem cell / chemo last January did not get it all.

Fact 2:  George’s heart function is diminished and this potentially may cause some challenges if another stem cell collection is the advised option.

What do we know after day 1 –

Fact 1:  the amyloid has spread into his nervous system and has caused some minimal sensation changes in his hands and feet (nothing to worry about unless it moves inward).

Fact 2:  George has tough bones – just ask the tech’s who took the bone marrow sample.

Fact 3:  Jayne fights for her man – no other spouse got to stay for the bone marrow extract, except for me.  You have to be such an advocate – there were a couple of tests that were redundant of cardiac tests that George had done in October and was able to persuade the team to use the October results – which is why our evaluation will be done in two days instead of three.

What do we expect to know today?

Not a whole lot more – we will have some blood test results, but the big answers will be in the bone marrow and the final blood work.  Today, I expect our last appointment with the head of the clinic to talk about treatment options.  I am hopeful that there is an alternative to the vigor’s of stem cell collection and know that I will always have Pop as my angel and you as my friends.

Amyloid

A short intermission and then it’s back – October 31st, 2006

jaynepike

Is there a correlation between amyloid and Halloween? Does the carving of pumpkins and the sound of screeching ghouls stir up ….

So what does a gal do when her husband’s cardiologist bumps up the schedule for amyloid evaluation and recommends a family vacation – she books a trip to Disney World and plans a turkey dinner at Wolfgang Puck’s.

My email message:  Thanks for your advice yesterday – we have planned a family vacation to Disney World the week of Thanksgiving (right before George’s evaluation).

Are there any restrictions on what George can / can’t do (i.e. thinking about those rides that have warning messages about heart conditions, which are George’s favorites)?

Also, is there anything else that I should know that you didn’t want to bring up in front of George yesterday? Am concerned that George’s overall heart function has decreased since last year and that may make the stem cell collection / transplant more challenging.

Response:  Good decision to go on vacation – my caution about the Disney rides would be to avoid those crazy roller-coaster rides (which is probably what George would want to go on). I think they do say if you have a “medical / heart condition” you should avoid the ride.

As I said yesterday George’s heart function (HF) has not deteriorated. You may recall that it did last year and that is why his initial evaluation/ treatment was pushed forward. His current HF has not deteriorated but his symptoms of SOB were concerning so that is why the Amyloid folks pushed up his eval. I believe that the stem cell collection / transplant will be more challenging because it is a second attempt (if they decide to go that route) and not because of his HF i.e., I am told that the second stem cell collection is usually more difficult.

Hope that helps.

 

Boston Medical Center, Post Chemo & Stem Cell, treatment

January 29th, 2006

jaynepike

You know the movie, “the Saint”; a 1997 action / thriller with Val Kilmer and Elisabeth Shue? His name in the movie was Simon Templar but throughout his adventures used the names of saints as aliases. In order to win the girl of his dreams, Simon had to perform three miracles.

Well, George is walking around the house saying Miracle One! He was officially discharged from the Amyloid Clinic on Friday! His follow up will include routine visits to his local primary care and a three and six month evaluation at the clinic. At the six month mark, the official diagnosis of “remission – yes or no” will be determined.

Now George is working on Miracle Two – getting his heart back in shape. The Amyloid Invasion of 2005 left amyloid deposits in his heart, making George’s heart inefficient (that doesn’t sound very wife-like, does it?).

The medical term is ejection fraction – an EF test determines how well your heart pumps with each beat. This test measures how much blood is pumped out of the heart with each beat, and how much blood pumps through the heart with each beat. An EF of less than 40% usually confirms a diagnosis of systolic heart failure. George’s is currently about 35% – which is livable, but we have to learn some new strategies about living with heart failure (which is do-able – how odd that heart failure is a treatable condition?).

On Monday, we are back to see the wonderful cardiologist, Dr. Sam, who first diagnosed George. I will be in the office on Tuesday, Wednesday and Friday, but available via cell phone and will be checking emails as well.

It’s great to have George home and to begin to get some normalcy back in our lives. George does have some limitations from the Amyloid Clinic – such as no driving (yes, honey, I’ll go to CVS again…) and some restrictions lifted (fruits are back on the menu!). George is also sporting a variety of caps (thanks, Mom!) as heat is lost from a bald head. He has gone from looking like Daddy Warbucks to the early stages of a chia pet.

It is also great to know that so many people are rooting for his recovery – thank you and please keep those prayers coming!
All our best!
~Jayne

Hmmm – wonder what Miracle Three will be??

Amyloid, Boston Medical Center

January 21st, 2006

jaynepike

Amyloid is created in bone marrow and it’s volume is measured in the Kappa Free Light Chain (there’s also a Lambda Free Light Chain).  A few months ago, I would have said that Kappa and Lambda were the fraternities in Animal House – but I’m wicked smart now.

Blood tests are done to measure complete blood count (or CBC) and these can help your doctor know what’s happening in your body.

One of the many blood tests that George has had over the last few months is a test to measure his volume of Kappa Free Light Chain.  The high levels that George had was the first indication of amyloid and this value is monitored closely.   When George was first diagnosed, his level was very high at 665.7 (normal is less than 20 mg/l) – but within an acceptable risk range of the aggressive chemo / stem cell treatment.  Right before Christmas, the level was re-tested and it had soared to 1,750 – not within an acceptable risk and the team was considering alternatives.  But George came through and another test at the start of January had the levels down to 1,500 and that’s when the team mobilized and treatment began.  The objective – stop the progression of amyloid!

On Friday, George’s levels were tested again – and it’s gone.  George’s bone marrow is no longer producing amyloid.

The official diagnosis of remission is still six months away, but this is a good sign!  The next months will be challenging as George rebuilds his strength.

Who do you thank for miracles?

Modern science and advances in medical approaches definitely played a part.  Positive attitude and loving support were key contributors – but the starring role is our belief that God will see us through.  As my sister Deb would say, “it’s all about the love”.

Our hearts are soaring this weekend!  Please know how much your prayers and support have meant to us.

 

Amazing Friends, Amyloid, Boston Medical Center, family, loving wife

January 15th 2006

jaynepike

Homeland Security has their own “national levels of terror”. The levels range from low to elevated to severe.

We each have our own terror levels. Over the past few months, the terror alert status for the Pikes has been severe and always on – moving from diagnosis to the frightfulness of the treatment options in October; educating ourselves and making a decision to push forward in November; starting the treatment in December and continuing into January. Each step took us on an unknown path – what’s the risk? what’s the probability? what if we don’t? what if we do?

Now that is all behind us and I am happy to report that we have reduced our terror level from severe to high. We can all breathe a sigh of relief. I also have discovered I am a stress eater and am afraid if I exhale, my jeans may not fit.

Over the rest of January, George will be visiting BMC on a daily, then every other day basis. His medical team will monitor his progress and make sure his path to recovery is as smooth as possible. His wonderful cardiologist will also be keeping an eye (and a stethoscope) on George! My plan this week is to get George to his appointments and then I will be online – please let me know if you need anything.

Thanks for your prayers – your support has lifted us!