Month: November 2015

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!

 

Amazing Friends, Amyloid, Boston Medical Center, family

January 14th, 2006

jaynepike

Are you getting tired of being my therapist? I hope not! Thanks for listening.

Today was spent at Boston Medical – George’s white blood count is rebounding slowly. Today, he received a platelet transfusion. Platelets are important for their clotting ability – they are also an odd yellow color – why do I always think that blood will be red? George is restless and anxious but doesn’t have a lot of energy. If we can do one “ward-walk”, he’s happy!

Tom spent the day at my Mom’s entertaining her with stories of my wonderful cooking abilities. I am sure my Mom added a few of her own stories.

Amyloid, Boston Medical Center, family, post chemo

January 13th 2006

jaynepike

You know that saying, “it’s not the heat, it’s the humidity”? It is the same with chemotherapy. It’s not the chemo, it’s the recovery!

The first days of this past week were spent at the lovely Amyloid Inn. We had a cozy room on the fourth floor overlooking Morrissey Blvd. The elevator was probably the most interesting thing about the Inn – it’s doors opened and closed violently and when you got to your floor, it was like a 747 landing at Logan. The folks running the Inn couldn’t have been nicer. We met another family (a Mom and son from Ohio – Columbus) – the son, Jamie, who is in his mid-thirties, has amyloid in his kidneys. They were here in December for three weeks and returned the beginning of January and won’t be going home until the start of March. Again, we are reminded of how lucky we are to be so close to such wonderful medical teams.

The days passed in a solid routine – the mornings were spent at the Amyloid Clinic and the afternoons I would watch George sleep and work on my wonderful laptop. OK parents! remember those newborn days when you kept checking – are they breathing? are they ok? This was the afternoon and night at the Inn. Because of the risk of infection, we were in quarantine – anytime we left the room, George needed to wear a mask. People offer up some interesting looks to the masked man. At least kids are honest in their stares…

Not unexpected, but always a surprise, George was admitted to Boston Medical for the weekend. His white blood counts have hit rock bottom (which means only one direction to go! UP!!) and his medical team felt it was prudent to have him stay as their guest. Most likely, he will be released on Sunday or Monday and am hoping that he can come home. George’s room has a great nighttime view of Boston – the Prudential Center, State Street Bank and it’s a full moon! During the day, construction abounds in South Boston – you can look in any direction and see projects from a rooftop deck to a new building start.

George is exhausted but still keeps a positive strength. I know that the strength is fed from your prayers.

thank you!
~Jayne

ps – wondering about the car left running? no dead bodies as I had suspected, but a couple who had a little too much to drink and managed to make it to their room but forgot a tiny detail.

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, family, loving wife

January 10th 2005 – those hiccups?

jaynepike

Day +4

In the world of chemo and stem cell transplant, the day you get your stem cells back is considered day 0, your new birthday. All days before and after are considered either +/- (sort of like our calendar and presentation date). So congratulate George on his 4th day!

George has been amazing. His recovery is going very well – his doctors are incredibly happy (and a little surprised – they may have underestimated George’s determination!).

We are staying at the Amyloid Inn with a lovely view of Morrissey Blvd. A typical day (ok, the last two days) involves the morning at the BMC Clinic (with blood work, vitals, etc.), then it’s back to the Inn. I log into the office and get a sense of how frustrated traveling people feel about staying connected. There is truly no control over how the hotel runs it’s internet service and I have put my new Boston driving language to good use.

From the chemo, George has developed hiccups, some are deep and some are soft and they vary in pitch. Normally, I would find this annoying, but I have never been so happy to hear this sound – this confirmation of life.

I miss you all and send you all best wishes – thank you for your prayers – it is truly working – I can see it everyday!

~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.