Has anybody seen my "get up and go"?? I think it got up and went somewhere!

Hi everyone...sorry I haven't been able to chat/blog lately. I have been dealing with lots of lethargy and GI issues (which I'm sure are related). Its been a real challenge trying to balance the need for nutrition and activity (of any sort!) with the need for the ever important happy nappy's. 

I'm trying to determine now what is "normal" and what is "to be expected" at this point in my recovery. Lately I feel like my day is one big freakin' Rest Stop! I get up, make the bed, rest. Walk downstairs, rest. Go back upstairs...cuz I forgot my meds, rest. Shower, rest, etc...  Not lots of energy in this girl right now. Perhaps my "get up and go" decided to go to Cape Cod without me?? Can't say that I blame it...I'm not much fun right now:)  Keep it down Del...I don't need any comments from the peanut gallery/entourage...

So I made a trip to my local hematologist last Friday and that went very well. Dr. Malek  trained at BU in the Stem Cell program for 6 years with Drs. Seldin and Sanchorawala. I am thrilled that not only is he is super knowledgeable about Amyloidosis, but he also has a great personality. He said I am doing very well (despite my whining) and that I need to give myself more time (3-6 months!!) before I will really start to feel better. WHAT??!!
I have lost 20 lbs in the last 2 weeks just in fluid alone (!), and my platelet numbers are over 200,000(yeah). Red and White blood cells haven't changed much, but I'm told they need more time. (I'm thinking they have about 93 more days to get with the program !)

Of course Dr Malek also reminded my about what my body has just been through over the last 6 weeks (like I needed to hear that!) and that I needed to take baby steps (literally) to get back in shape. I'm not to lift any more than 3 lb weights and I can't walk any faster than 3 mph. They still don't want me getting over-heated or breaking a sweat. (Like I'm gonna break a sweat with a 3 lb weight -ha !) Still I have been trying to do a little bit everyday (Del, my ever faithful entourage, babysits me while I'm on the treadmill to make sure I don't go over 3mph)...when and if my GI track allows.

Food is another issue altogether. At this point I am not "neutropenic" anymore, which means I can begin to introduce some other foods if my GI track will tolerate it. I still have to be very careful of bacteria in and on foods and eat fruits and vegetables that have thick skins like oranges, bananas, melons, or potatoes. However, the problem is my GI track is still very much destroyed due to the chemotherapy, so it's hit or miss. I have tried to introduce some new things but right now nothing seems to agree with me so I end up with severe stomach cramps and constant "issues"  (do I really have to explain myself here??)

They told me before all this started that after my appetite comes back I might not even like things that I used to love and that I might actually like things that I couldn't stomach before. Taco Bell...here I come!! But seriously...I don't even have a desire for chocolate (OMG!) or red wine anymore...whats up with that??? ( I must be really sick!)

I am dying for a big salad, but lettuce is still not on the list. Tried ice cream and yogurt, but still lactose intolerant, tried some cooked veggies...not so good. So I guess I'm just gonna wait another week and try again. (How's that for being patient??) Looks like its eggs and plain pasta for me again this week.

My family, on the other hand, has been the recipient of some delicious culinary creations, thanks to friends and neighbors who have been dropping off dinners for the last month. What an incredible help to our family. (Thanks Julie for orchestrating all that!) We have also received "dining dollars" to be used for take-out or ready-made meals from our friends who are logistically too far away to cook, but who also wanted to help out in some way. I cannot thank you guys enough! I am always brought to tears when I think about the loving hearts and hands that have been extended to us during this health crisis. The cards, emails, prayers, books, flowers and blog posts bring sunshine to my days and fill my soul with hope for the long road still ahead.

Love, Cheryl

Still no sign of hair on the horizon though...mmm