Category: Post Chemo & Stem Cell

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.

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, family, loving wife, Post Chemo & Stem Cell

January 11th 2006 – quick update

jaynepike

Hi all – just a quick message to let you know that George is doing well – some stomach troubles, but that is to be expected with chemo. Today his white blood count hit bottom (again, as expected).

I wish we could say we were lounging by a pool enjoying the sun and a pina colada – but we are at the Amyloid Inn and can hear church bells chiming the noon hour.

Here’s an interesting mystery – yesterday, there was a white Hyundai with out of state plates – the drivers’ window was open and the car was running when I went out to pick up lunch. When I came back, it was still running – but I had only been gone about 5.2 minutes. Over an hour later, George and I went out to CVS (to stock up on medicinal, like Mad magazines!) and the car was still running! When we came back, we mentioned it at the front desk. Later that day, there was a note on the closed drivers window that the keys were at the front desk. The car is still there today and the keys are unclaimed (yes, I asked). I am thinking there is a dead body in the trunk. This is Jayne reporting live from the Amyloid Inn….. Stayed tuned for more information on this developing story.

Thanks for your prayers – please keep them coming!!!
~Jayne

Amyloid, Boston Medical Center, Chemo, loving wife, Post Chemo & Stem Cell, Stem Cell

January 6th 2006 Post Chemo & Stem Cell Infusion

jaynepike

We are officially in Phase 3 – Recovery!!

Upcoming Appointments:

  • 01.07.06 — 1:00 pm – Janet at 7 East – Saturday 2 injections
  • 01.08.06 — 11:00 am – Janet at 7 East – Sunday 1 injection
  • 01.09.06 — 8:30 am – F3 Clinic on Monday

Medication Updates:

Start anti-meds on Saturday; decrease Spironlactone to 25 mg until Monday

Things to Do:

Home:

  •  Big Plant Giveaway
  •  Dried Plants Giveaway
  •  Clean house
  •  Laundry
  •  Groceries
  •  Figure out what the check engine light means
  •  Mail pickup (thanks, Dot!!)

Tom:

  •  From January 8th to January 12th – Barbara, Greg and Chris (God Bless this wonderful family)
  •  Bring letter to his teacher
  •  Help Tom with homework and school projects

Comfort Inn:

  •  Peg is co-ordinator of meals
  •  Laundry Pickup – Peg will pick up and return
  •  Laundry Wash / Dry / Fold – Mom (maybe you can find those missing socks?)

Jayne:

  •  Target – pill box, Imodium AD, prescription pickup
  •  Write letter to Mrs. Montefalco with schedule update and contact info
  •  Update the calendar with CCD dates and clinic visit times
  •  Update cell phone with phone numbers

Ideas for Gifts:

Only because you have asked – here are some ideas:

  1. Please no flowers, fresh fruits or vegetables
  2. Pajama’s (the ones that open in the front – the catheter makes pull-on’s a tad challenging)
  3. Gift cards to local restaurants (the kind that offer curb-side delivery)
  4. Dinner in a basket – something quick to pull together
  5. Chocolate (OK, that’s really for me!)

Rules to Recovery:

The high dose chemotherapy in the bone marrow transplant process and the threat of infection pose health challenges for George. While the transplant success is good, there are likely to be setbacks along the way. This is to be expected and is part of the process. Please be mindful of this and if I or George say “No, this isn’t a good time”, please know it is for George’s health.

There is also a chance we will ask you to wear a mask, please don’t use it for illegal purposes later.

George’s appearance may change, so be prepared. Don’t worry about commenting on his looks or trying to make him feel better. If he loses his hair, he’s bald. Transplant patients do not look good. It’s better to say things like “it’s so good to see you getting stronger” or “look at you, walking around”.

Our job right now is to listen. Let George take the lead on the conversational journey. Don’t forget to hug!!

During stay at Comfort Inn:

  • 617.287.9200
  • 900 Morrissey Boulevard, Boston MA 02122
  • We will keep visits limited; this time period represents the highest risk for infection as George’s immune system begins to regain strength
  • Have the sniffles? Don’t even think about it!
  • George will be sleeping a great deal, please use email (less noisy) to contact
  • Avoid crowds

At home – January

  • Limited visits continue
  • No visits with any signs of cold or illness
  • Avoid crowds

At home – February

  • Limited visits continue
  • No visits with any signs of cold or illness
  • Avoid crowds

At home – March

We’ll figure that out later.