Category: Diagnosis

Amyloid, Boston Medical Center, Diagnosis, family, Stem Cell

December 14th 2005 Stem Cell Collection Complete!

jaynepike

As you know, phase 1 has officially passed! George did an amazing job – this phase was very important because it sets the stage for the rest of his treatment plan! It was also important because George made it through – alive but exhausted. Huge sigh of relief and a massive thank you for all your prayers.

I was truly hoping that we could forget about amyloid and chemo and everything else until after New Year’s (denial is becoming one of my favorite destinations), but there is the business side of being sick. The entire month of January will be devoted to George’s treatment and initial recovery – keeping him safe and guarded against any infection. But you have to learn how to do this – what to eat, what to avoid, what to do, what not to do…… so that is our new December.

Our initial idea was that if George was an outpatient throughout chemo, stem cell infusion and the 2 1/2 weeks of daily follow up visits, we would be based from home. George could sleep in his own bed and recover in his recliner (probably fast asleep with the remote in his hand!). In conversation last month, we discovered we needed to be less than 20 minutes away from Boston Medical. New plan – stay at my Mom’s in Randolph! It would be great for me (she’s my MOM!!) and great for George. But in talking with the Amyloid Clinic today, we were disappointed to hear that we need to be very close to Boston Medical during that phase – sorry Mom. It looks as though we will be staying at the Amyloid Inn (aka Comfort Inn in South Boston) for a few weeks in January. Boston Medical uses this location as a base for their amyloid patients – so I would not recommend this as a tourist spot!!

Now if I was headed off to the Isle of Denial, the Inn would include a spa ……

We’ll be meeting with his hematologist / oncologist on Thursday to talk more about phase 2 – which means I’ll have more to report then! Our appointment is in the morning; I’ll be logging in at home after that.

And am also officially grateful to all of you for your support, understanding and wonderful thoughts.

All our best,

~Jayne

Amyloid, Boston Medical Center, Diagnosis, Stem Cell

December 2nd 2005 – Stem Cell Collection

jaynepike

Over 2 million served…….

Yup, that’s today’s stem cell collection count!

So here’s the last few days:

Friday – December 2nd

George’s first day at Hotel BMC (aka Boston Medical Center). He was given a lovely suite with a great view of the Prudential building and a cozy welcome basket (ok – it was really a little pink plastic tub with toothpaste, soap and moisturizer). On the menu today was a tasty lunch of G-CSF, a natural growth hormone designed to stimulate blood growth in the bone marrow. It was so yummy, George had more for dinner.

Poor George with his state of the art double lumen catheter and the first thing done in the cardiac wing is an iv placement! All in all, a truly uneventful day! I love these kind of days!

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Saturday – December 3rd

George’s second day at BMC and he’s going bonkers. The sixth floor is being renovated and I think if his heart monitor could pick up waves that far, he would be there with a level and a power tool. More growth hormone injections. Some of the anticipated side effects are starting – headache and flu-like pains.

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Sunday – December 4th

George did have a fever today, but that is another potential side effect of the growth hormone. Each day his white blood count and potassium levels are checked. The goal is to increase his white blood cells to an extremely high level – normally, WBC (short for white blood counts for those of you not in the biz) are in the 4.00 to 11.00 range. George’s are now 34.60.

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, Diagnosis

November 27th 2005 – week in review

jaynepike

And so it begins….. here’s a recap of our week!

Wednesday, November 23rd

Tom had a great tour of the Amyloid Clinic at Boston Medical; Dr. Mike was able to spend time with him and answered his questions – like “how are you going to get it out of my Dad’s heart?”. Tom also found more vending machines.

Next George had his echo cardiogram done and Tom and I played tic-tac-toe in the waiting room. The echo took longer than usual – the first technician starting clucking and went to get a more senior technician. He also clucked and brought in the head of radiology to look at the echo. Now George is in the room with three cluckers who are all talking about his heart. Having a Y in the middle of my name makes me want to ask questions. George does not have a Y so we don’t know what the clucking was about but will find out on Monday.

The fashion accessory of the Thanksgiving season is a heart monitor that George needed to wear for 24 hours.

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Thursday, November 24th

Off to Connecticut to George’s daughter’s home. George’s two oldest kids (from his practice marriage) and their families, George’s ex-wife, former in-laws, and his former extended family. I am working on my Karma points.

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Friday, November 25th

AM trip to Boston Medical to return the heart monitor and meet with the most wonderful nurse practioner, Katie Fisher. She reviewed the entire treatment plan and walked us through what to expect in simple terms. Then back to the office where I did cry a bit at my desk – see phase 1 of the treatment plan.

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Saturday, November 26th

My sister, Peg, threw a leftover bash for my family. Everyone in my family brought something for George – from a case of Ensure to the largest bottle of Tums to anti-bacterial wipes! We all said good bye sobbing.

The treatment plan – phase 1

When we met with Katie on Friday, she explained that the normal treatment protocol is all out patient. In George’s case, his team has decided that George is at high risk for cardiac arrest and death at several stages of the treatment. They have decided that for the first phase and possibly for all of his treatments, he will stay at Boston Medical. Now this is actually good news – the team can monitor him with better diagnostics that I have at home (like poking him every few minutes – are you ok?).

What can we expect over the coming week?

Monday, November 28th – We meet with Dr. Sam, George’s cardiologist, who will explain all the clucking and then we meet with Dr. Seldin, who is the head oncologist at the Amyloid Clinic. Dr. Seldin will also have the long awaited “calendar”, but we do have some preliminary dates (which are subject to change).

The first event is the insertion of the catheter that will be used to provide medications, draw blood, etc. – so there’s no need for an IV. The current plan has this happening on Thursday, December 1st. On Friday, George will be admitted into Boston Medical to start the growth hormone injections, which last for four days. This stimulates the bone marrow to produce more stem cells. On the fourth day of the injections, the stem cell collection begins. This will last for two to three days, depending on how much is collected.   Each day of the stem cell collection, blood is drawn from the catheter and processed through a special machine. This lasts from 8:30 am to 1:30 pm; by 4:30 pm, the team knows the count of the stem cells (I guess the little suckers are hard to count!). The total need is 5 to 7 million stem cells but George, being an over-achiever, has vowed to give 8 million!

The second part of the treatment plan, which begins with the chemo, may not happen until January 2nd, but hopefully will know on Monday.

Part of writing this is therapeutic for me, so thanks for being such a good listener. Also I can’t express how much your support, understanding and good wishes have meant to me and my family. This journey totally sucks, but knowing that you are all on my side gives me such strength.

Amyloid, Boston Medical Center, Diagnosis

November 13th 2005

jaynepike

What a week!

On Monday, it was the heart biopsy; on Wednesday, it was a skeletal survey. And the good news is — the skeletal survey shows no sign of bone destruction so we can rule out aggressive multiple myeloma – hurrah! The heart biopsy is still officially in the lab — results for all of these tests should be available by the end of this week. At this point, we are working with the amyloid diagnosis but remain cautiously optimistic that it is in the very early stages.

Personally, I think that all the prayers are working!

Friday night George was feeling a bit off and our fab neighbor, Dot, took his blood pressure. It was on the high side so we decided a midnight jaunt to Boston Medical was in order! Boston is so pretty at night and traffic is so much lighter! Made my best time yet – clocking in at less than 30 minutes! Since George just had the biopsy on Monday and there’s something about the term “amyloid” that made the E/R team want to keep him overnight for observation. I kind of like looking at him too so I can understand their reasoning.

Just so you know, I did not cook on Friday night!

On Saturday morning, Drs. Young, Younger and Youngest visited and determined that George was a man of mystery! They poked and prodded but finally decided to release him late Saturday afternoon. Tom and I spent the afternoon with George and explored the whole hospital. Tom is quite fond of vending machines so that was our mission – to find all the vending machines in the hospital! Am thinking we did a good job since I am out of quarters and one dollar bills.

Thanks so much for all your best wishes, prayers and support.

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