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

January 3rd 2006 Chemo Begins…

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

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