Chapters

Amyloid

January 5th 2006 – Stem Cell Infusion

jaynepike

Return Engagement – Stems Cells Back in Town Tomorrow!

The second day of chemo went very well. George has started on the anti-nausea medication. He’s feeling OK and is at Boston Medical for the night. Tomorrow the stem cells will be returned. It’s an interesting process – there were five bags of stem cells, each individually frozen. The bags are defrosted one at a time and then fed back into George’s blood stream where they will find their way back to the bone marrow and grow up to whatever type of blood cells they are destined to be. The nice thing about the “one at a time” is that if there are any complications and the medical team needs to spread the return over a few days, it’s back to the freezer for the stem cells!

Tom is also feeling better – he stayed home from school an extra day just to give his body another day of rest. Do not tell Tom – but….. he thinks I make the best chicken soup. It’s a bouillon cube and boiled water but to Tom, it’s the most wonderful elixir ever created. I guess not being a wonderful cook has set low expectations and anything goes!

Please pray hard tomorrow. George is very anxious about this procedure. We are staying positive – everything has gone wonderfully so far and I know in my heart that is due to your support and prayers.

Amyloid, Boston Medical Center, Chemo, family

January 3rd 2006 Chemo

jaynepike

Anticipation…..

You normally think of anticipation as a positive thing – waiting for the start of the weekend or the vacation. But isn’t it really the start of something? A new beginning? There’s the anticipation of marriage – otherwise known as cold feet! There’s the anticipation of a new baby – otherwise known as a lot of different things to different people!

So is anticipation the feeling you have when you are facing change or something that is just different?

I am thinking about anticipation as I am sitting here with George at Boston Medical in the Blood Disorder wing (it needs a more upbeat name). Anticipation about today and his reaction to the treatment; anticipation about the immediate tomorrow and anticipation about the far away tomorrow.

What will our lives be like in two months? Six months? A year? Ten years? Yes, our lives will be different. But how to ensure that our lives will be better? Healthier? More loving? More joyful? Can you write and achieve goals around creating joy? What did Yoda from Star Wars say – something like “not try, do”. I am going to – my to do list will be more focused on things like hiking with Tom than on things like balancing my 401K portfolio.

Somehow it seems more important now to know my Mom’s favorite childhood hobby, the name of my husband’s favorite teacher and how to play poker so Tom and I can challenge each other.

Ps – George’s favorite teacher was his athletic coach in junior high, Mr. Paulins; he remains in George’s memory because he was fair, tough and did not have any favorites.

Today’s Journey:

Our arrival time was scheduled for 8 am; but you know that George hates to be late for anything. With our alarm set for 4:32 am, our planned departure was for 5:30 (because it may snow).

But Tom had other plans – he woke up at 3:13 am with the dreaded stomach flu. So let’s change the plan, change the sheets, change the boy, rub his back, get some ginger ale and hope for the best. Poor Tom – he was so sick! He decided it might be best just to sleep in the tub – increased efficiency and all that.

Which of course leads to guilt – what’s an Irish Catholic Mom to do when her son is throwing up and she needs to drive her husband to chemo? Thank goodness for wonderful neighbors!

We were parked in the enviable and desirable first floor of the garage by 6:40 am – so now we have an hour and twenty minutes before we need to be anywhere!

A quick cup of tea for me and some juice and a muffin for George at the Boston Medical cafeteria (wonder if we can get frequent diner discounts?), then we’re off to the waiting room. Did you know one of my talents is the ability to sleep on a rock? So I dozed for about 45 minutes while George’s anxiety level increased by the second. The next thing I knew we were headed into the treatment room.

George’s room has a lovely view – there is a building across the street that started construction when George first came to Boston Medical. It is now a full steel frame of six stories – all wrapped in a thick polyfilm that sweeps loudly in the wind. I expect by the time this is all finished there will be a new building there!   On a clear day, you can see the top of the Prudential Center.

Chemo is an interesting drug – there are many different types. George had mephaline, delivered through an IV. Melphalan can be served up in different dosages – George’s was fairly strong at 134 MG – it’s normal dose is a 2 MG oral medication.

The treatment starts with an IV of saline and potassium – then an oral cocktail of sedatives and anti-nausea meds followed by ice chips. One of the yucky side effects of chemo is mouth sores. Huge, painful, disgusting mouth sores – the kind that make it impossible to swallow. A couple of years ago, a patient at Boston Medical was very concerned about mouth sores and decided that before and during his chemo, he would freeze his mouth with ice. He thought that if his mouth was frozen the chemo could not cause any damage. And it worked! So now it is standard practice at Boston Medical for chemo patients to have ice packs in their mouths right before, during and immediately following chemo. Poor George – his lips were almost blue!

Ice chips, chemo, then more saline and potassium. Lots of resting in between!

George did amazingly well! He has such a strong positive attitude! When the chemo was being “delivered”, he imagined it going into his heart and removing all the amyloid deposits.

Right now it’s 12:31 pm and George is sleeping – soon he will smell lunch and wake up, but right now he is peaceful and all is well with the world.

Amyloid, BNP, Boston Medical Center, Chemo, loving wife

January 3rd 2006 Chemo Begins…

jaynepike

Nutrition Notes:

No fresh fruits or vegetables (i.e. salads); no Chinese food, Thai food, stir fry, no sushi

Food must be fully cooked

OK for small cans of fruits, applesauce, Jell-O, juices (pasteurized) – little containers. Anything that is processed is usually ok.

All milks and juices must be pasteurized

What about cooked shrimp – this is OK

Be careful on fresh fruits and vegetables – bacteria we are not familiar with – stay away for three months – gradually introduced after three weeks.

Chemo impacts from mouth to bum – cold is better than warm. Pills start on Thursday – four different anti-nausea and vomiting meds.

This week will be OK; next week and week after will be feeling the worst.

Imodium AD – pick up at Target

Pick up pill box at Target

Don’t start Imodium until after a stool sample is collected. Ask for collection tools later.

Other Notes:

Day +8 Fatigue really kicks in – fluid can be high – BP can be a concern – watch for light headed feeling. Will be a balancing along the way the amount of Lasix.

Day +9 Cells start to come back – start to feel better / different. Day +14 Could be every other day and be based from home. Can’t promise anything, but this seems reasonable right now.

Recovery at home is the biggest challenge – fatigue from laying around. Recovery from chemo – a good three months is what your body needs. Be patient with yourself.

Contact with “The Others”:

Hand washing is important – If anyone has coughs, colds, stay away – keep 3′ of distance away from infected person(s);

Masks? Yes, where one at home in same room with Tom and where one in public – this is for three months. Kate will get some.

Medication Notes:

Stop Lipitor; Continue with all other medicines; including penicillin

Start following additional medication list from Kate

Oral Care:

Mouth care is important – make fresh baking soda rinse each day

The toothpaste that dentist gave – yes, this is OK.

Dry taste may last for several weeks – do not floss!

In Patient Stay

Kate will note that blood draws will be done by her – George will be in 7 North.

 

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

Amyloid, Boston Medical Center, Chemo, Stem Cell

December 27th 2005 – that lull between collection and treatment

jaynepike

Happy Christmas!

The gifts are all opened, the turkey is basting and the tree is all a-glow. There is such a build up to Christmas Day – the gifts to buy, the food to prepare, the cards to mail, the presents to wrap. So much preparation goes into making this one special day even more special.

Which leads me to the next phase of George’s treatment.

There is a huge build up to chemotherapy – so much preparation (the growth hormone, the stem cell collection, all the blood tests) and so much worry and prayers (that would be our job!). As of today, we are not positive if George will start chemo on January 2nd or January 9th. We’ll know for sure by this Thursday. The medical team is leaning towards keeping George in the hospital for the chemo and stem cell return.

George did develop an abscessed tooth that needed to be re-root canalled (is that a word??) – so added to his med menu is a lovely painkiller and an amazingly large antibiotic (makes you want to ask if it’s really oral).

My Christmas wish for all of you is a healthy and happy 2006!

My Christmas wish for George is that he continues to feel the tremendous support that your prayers have given us.

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