Chapters

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.

Amyloid, Boston Medical Center, loving wife, Stem Cell

January 6th 2006 – Stem Cell Infusion COMPLETE!

jaynepike

8:30 am – A lovely gentleman came in this morning and offered us communion. George asked if he could receive communion because of his previous marriage and divorce. Well, the host has never disappeared faster! He talked with us for awhile, but as a Eucharist Minister, could not really advise George, but would ask that the priest stop in to talk with us.

During George’s last stay, he did have a visit with Father Wright and participated in confession and communion. See how the question was avoided with Father Wright? I think George was waiting for Father Wrong to come by – but for today, Father Roger may stop in.

9:35 am – Dr. S, Kate and Pharmacy MD. Mouth sores would appear next week if any will occur. BNP still high at 1400 – ugh.

9:45 am – Water bath is here. Sandy explained the stem cells and their amyloid involvement – amyloid is not usually present in the blood. Sandy loves J.Jill socks but wear out too quickly in the toe.

9:50 am – Brian using IV to start secondary fluid and injected doses of .25 mg benadryl (thru iv for anti-inflammatory) and 1 mg Ativan (for sedative and anti-nausea). Snickers is Brian’s favorite – we brought a bag of candy to the hospital – this is a good idea and helps to increase your popularity.

10:00 am – all ready to go; official start time is 10:11 am. Am signing off for the stem cell return.

1:20 pm – George is sleeping and my hands have finally stopped shaking. George was able to get all five bags; completed time for stem cells was around noon – the equipment and team left at 12:45 pm. Lots of equipment – warming bath to heat up the frozen cells; an IV full of saline; another IV administering the stem cells. Each bag was given one at a time; so individual bags were taken out of this special cooler and placed in the warming tray. We took a small break in between bags to flush the IV line – stem cells can be quite clumpy.

At one point, George’s blood pressure was getting a bit too low. All I had to say was something like “picked up the mail yesterday and I forgot to tell you about a few charges”. BP back to normal. I know my man.

Some good news – we only have to stay at the Amyloid Inn until George’s white blood counts are closer to normal. That may be as early as Saturday January 14th. Phew – that will help to keep Tom’s schedule a little more steady.

2:45 pm – George is doing great; Kate and Dr. S came in to check on George and announced he was getting the boot – yup AOK for release today. Am torn between relief and surprise.

2:47 pm – George is packed.

3:00 pm – the car is loaded and we are ready to go – just waiting for discharge orders. And waiting…. And waiting….

3:10 pm – Nutritionist arrives to review the do’s and don’ts of the low bacteria diet. It’s actually all junk food. Anything with preservatives is fine; stay away from anything fresh, like fruits and vegetables.

3:27 pm – another MD arrives (that we haven’t met) and asks George about his story and when did he begin feeling symptoms. I think there is a point that you need to say – go read the #@%# chart and we have hit that point.

4:22 pm – Discharge orders! We are free to go!

4:28 pm – George and I are at the elevator and we hear the announcement for a Code Blue in 7 East and the sounds of a woman sobbing, “no, no, he’s my husband”. George and I hold each other tight, knowing that today’s outcome could have been much different.

5:00 pm – On the road to recovery, but stuck in Boston traffic.

6:03 pm – We are home!!

One of the potential side effects (how many times have I said that??) is a garlicky smell from the preservative that is used in the stem cells. Around the second bag, the smell began — imagine a huge kitchen in Tuscany and you are sautéing onions and garlic in olive oil and then you add some tomatoes. After a few bags, it’s lost it’s initial charm. For those of you who have been lighting candles for George, thank you. But tonight, I think I’ll be lighting candles for a different reason.

My heart and mind are cautiously optimistic – we have faced the risk of today and have overcome. More risks are coming, but those are for tomorrow.