Category: loving wife

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

December 29th 2005

jaynepike

And so it begins….

I am scared. We spent the day at Boston Medical.

Tomorrow, George will be back at Boston Medical for his catheter placement. Then its home for the New Year’s weekend. We’ll be starting 2006 with a bang – Tuesday starts the chemo treatment. Followed by a return engagement on Wednesday for his second dose – Thursday, George will be admitted into BMC and stay until Sunday. His stem cells will be returned on Friday and he will be monitored closely over the weekend.

Based on his recent labs, George’s medical team has been concerned about the condition of his heart and the increased activity of his disease (which amazingly, can be monitored thru blood tests!). On the 19th of December, his condition had worsened to the point that they felt George could not handle the aggressive IV chemo and were considering oral chemo. But fortunately, by the 27th, his lab tests had improved and they want to push ahead with the IV chemo.

The phase we are entering has risks – 1 in 8 don’t survive – but 7 in 8 do survive! Based on George’s current condition, the estimate is that he has a 50% chance of full remission.

Starting Monday, January 9th, we will be at the Amyloid Inn (aka Comfort Inn on Morrissey Blvd). They offer a shuttle that will take us back and forth for the daily visits to BMC; a microwave and fridge; internet access and a diet pepsi machine! (It would have been bad if it was diet coke.) We will be there until January 20th. The medical team then determines if George is ready for every other day visits, then he gets “weaned” to once a week visits.

I am still trying to decide whether to be a stress eater or a stress non-eater. Maybe I’ll just wait to see what happens. Please just tell me I look wonderful the next time you see me.

Now, January will completely suck for the Pikes – but I will have time that I need to do something beside pretending to be Florence Nightingale. I have a couple of projects that I will work in during the time we are at the hotel – if there is any analysis that you need that is not time sensitive, please let me know.

I’ll keep in touch by email and let you know how we are doing (and whether or not I’m stress eating!)

All my best wished for your healthy 2006!

~Jayne

Boston Medical Center, Diagnosis, loving wife, Stem Cell

December 2nd 2005

jaynepike

George had the double lumen catheter placed on Thursday. It is quite a handy apparatus – will be used to draw blood and administer medications. He did great but we were both quite nervous since this is the kickoff – it’s really happening. So here’s the roller coaster of emotions that was Thursday!

What is panic?

A restless night, with sleep finally overtaking you at 4:00 am, pushing the snooze button at 5:00 am and looking at the clock at 5:54 am and realizing you have about an hour to get into Boston Medical (which is about an hour away with traffic). Minimal personal hygiene and we are out the door! God bless the HOV lane – we made it to the BMC by 7:03 am. George hops out to check in and the chauffer, ooh I mean me, drives to the parking lot and squeezes into the first spot available. Then run into the admissions and there’s no George?? I just dropped him off – where could he be? Is he already in surgery? No – the bathroom! No, as I am just about to scream his name, a lovely little lady pops off from behind curtain number 1 and says “oh, hi – you must be Jayne – George is on the second floor – right up those stairs”. Pheew. No screaming needed.

What is jubilation?

I found a Starbucks in the hospital!

What is fear?

Watching George, all hooked up, being wheeled away – enough said.

What is hope?

Knowing the chapel is right next door and that I can imagine it is filled with all your support and love.

What is love?

Watching George come back – again, enough said.

What is simply fun?

Walking down West Newton Street and saying hello and good morning to everyone you see. It really throws them off and the reaction is quite fun.

What is gratitude?

The feeling in my heart and soul when I think of all of you supporting us with your hopes and love. And knowing that George is in the best place getting the best care.

 

Amyloid, Boston Medical Center, loving wife

November 21st 2005

jaynepike

We spoke with the doctors at Boston Medical Center Friday night and it has been confirmed; George does have primary cardiac amyloid.

So what do we do now? This week the focus will be putting together a calendar for the treatment plan; based on tonight’s conversation, the treatments may start as early as the week after Thanksgiving. As soon as the calendar has been finalized, I’ll send out a copy. Hopefully there will be one day that Tom can come into the hospital with us – he’s very curious about the treatment rooms and where his Dad will be “fixed” and I think he’s heard that there’s new vending machines in that building….

What can we anticipate over the next months? First, it will be really, really bad. Then it will just be really bad. After that, plain old bad and then, the sky turns blue and flowers blossom and things will be start to be wonderful again. So, we will have a dark winter but it will turn into a beautiful spring.

We have been overwhelmed with offers to help in any way. Well, now’s your chance!! George will need distractions during the treatment and recovery. Books on cd would be wonderful! If you have any that you are done with, I know that George would enjoy the diversion.

Let’s pause for a moment and remember all the positive things – we have a diagnosis, there’s a treatment plan, we live in the best location to be sick and we have all of your support. Knowing that all of you are praying for George’s health is such a gift. However, if you would like to send me chocolate, that would be a nice gift too.

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

November 7th 2005

jaynepike

Today was “heart biopsy day” for the Pike family.  Imagine a flexible straw being inserted into your neck – then into the straw goes the tiny little saw that actually makes a ZZZZ sound as it removes little pieces of your heart.

The team working with George today was amazing!  They made George feel so comfortable with their jokes and medications!  Then it’s off to the lab.  A special red stain, called Congo Red, is used to determine the presence of amyloid.  The results should be back within a week.  The heart biopsy results and the skeleton X-Ray will be the final pieces of evidence needed to determine George’s treatment plan.

The day was long; we didn’t get home until a little after 5:00 pm.  George is sleeping now and I have to say that my heart is weary too but knowing that you are all supporting and sending us warm thoughts keeps us going!

thanks for keeping George in your prayers

Amazing Friends, Amyloid, Diagnosis, family, loving wife

October 27th 2005

jaynepike

Hello, is this the friend in need is a friend indeed network???

First let me apologize in advance for dumping all of this in an email.  I haven’t been able to hold a “dry” conversation yet and am still processing the news.  So here goes…………….

I am in agony.  George’s blood tests came back and indicate that he has amyloid in his blood system.  Amyloid is a rare condition that starts in bone marrow and spreads throughout the body via the blood system.  It attacks organs until that organ can’t function anymore.  Right now, the thought is that the only organ that is impacted is the heart.   We spent the day yesterday at Boston Medical Center – one of the two places in the country that have an Amyloid Clinic.  Yesterday was focused on more blood tests, an exam and a biopsy.  The biopsy was like a little liposuction and the results will indicate whether or not amyloid is in the fat cells – if it’s there, then it’s in the heart.   All of the symptoms that George has experienced, including the thickening of the heart muscle which then reduces the size of the heart chambers, can be traced back to amyloid.

Next Monday, we go back for the kickoff of the three day evaluation – the worst of it is the bone marrow biopsy.  A long needle and hip bone is all I need to know.  We’ll finish up on Wednesday – it’s all out patient so he can come home at night.  All the results will be back in about a week.

Once we know the extent of the disease, we can figure out the treatment plan – it will involve some kind of chemotherapy, either oral or via IV.  There’s no cure, but there is a high remission rate – 70 to 80%.

I keep focusing on how lucky we are to live in the Boston area (if we had stayed with the cardiologist in Brockton, it never would have been found – once amyloid takes hold and is not treated, it can result in death within 15 months); both my office and George’s office has been so supportive and I have a great family and friend support network!!

Tom’s been terrific – he knows only that George needs to go back to the hospital for tests and that we are looking for something that will make him feel better.  I explained all this to him yesterday and he said “ok – do we have any Oreo’s?”.   But of course I had already eaten those.

When an event like this happens, it really does put everything into perspective.  Everything at work – all the deadlines – all the stress – has been downgraded.  Traffic jams and delays just give me time to think quietly – don’t even need the radio anymore.  Tom and I studied for his test tomorrow by candlelight because it seemed more fun.   Maybe simplicity really is best.

Please keep George in your prayers!  I’ll keep you posted on how things are going.

and …. I need a pizza night!!!  well actually, maybe a wine night.

I’ll talk with you soon,

~Jayne

Amyloid, Diagnosis, loving wife

Amyloid is present and accounted for…

jaynepike

October 24th 2005

Labs are back – can now spell amyloid…

Got the call around 8am at work – arrange for George to be seen at Boston Medical Amyloid Clinic as soon as possible. After a painful and quick sob, my wonderful co-workers whisked me away to my sister’s home.

The marvelous Peg, when I called to say I was coming over instead of being at work, calmly asked if I would like a cup of tea or a glass of wine when I arrived. Love her!

Multiple phone calls later – some in a high pitched panic voice – George’s appointment is set. We will be at the Amyloid Clinic in time for Halloween. An appropriate time for blood draws, don’t you think?

George was at work the entire day – had no idea this was going on. Well, not until he arrived home around 3pm and found me in the kitchen. By then I was cried out (or so I thought) and could talk to George in a “here’s the plan” voice. George is very positive and firmly believes that we will be fine.

I am very positive too but am not so sure – but we have a plan! And that’s to get to BMC next week. So lucky to live so close to Boston!