09 July 2009

Thursday: Day -9

Went over to the OTU clinic about 7:40. Started out by getting vitals, and had blood taken for tests. Then had a bag of fluids connected to my Picc line. After those ran for a few, I got a bag of Zofran (anti-nausea) added. At that point I was also given an oral dose of steroid. When the Zofran was all infused the IV switched back to fluids for a bit. Then came the bag of chemo drug. They are giving me Fludarabine to start with. After that finished I was back on fluids for about an hour. During all this Donna, and my day nurse, Carol, came over and discussed various things with me, including all possible side effects of all the drugs.

I hadn't eaten anything before I went over as I wasn't sure of the protocol. Fortunately there is a Starbucks located in the Courtyard Cafe, so Mike went to get us each a venti coffee of the day and a cheese Danish. We learned a new trick. We normally get the bold coffee. They were out and instead of having Mike wait for a new pot to brew the barista suggested a shot of espresso into the regular coffee. That actually tasted pretty good. A worthy substitute.

Alish, the dietician, also came over for a chat. I am a problem. Or maybe just a challenge. Most people who come here for treatment are not foodies. They get a set of simple basic instructions and it's easy for most of them. Add to being a foodie the fact that I was a Home Ec major with lots of food and nutrition classes. I need to know how to apply that knowledge to my current situation.

One of the things you can't have is black pepper. So I asked about cayenne. Pine nuts are not on either list of yes you can eat or no you can't eat. She is off investigating them for me. I can have roasted nuts, but not raw nuts. So I asked did I need to buy nuts already roasted or could I roast them myself. She's off investigating that, too. I can put raw nuts in things that are going to be baked, such as banana bread or one of my favourite veggie entrées, Walnut Roast.

Even though biologically tomatoes are a fruit, she wants them to be a vegetable. The difference here is that at home I can eat raw fruit (other than berries) if it has been well washed. All vegetables have to be cooked. (I forgot to ask why on that, but will find out Friday.) That's why pine nuts came up. I have this really great baked tomato recipe that has pine nuts in the topping.

Apparently I can eat frozen berries. When I said, oh good, I put up blueberries from our bushes. Nope, can't eat those. Only commercially frozen berries because those are flash frozen at super cold temperatures. She didn't realise she had needed to point that out, as she hadn't run into anyone who froze their own berries.

She wants me to eat lots of animal protein. I asked about some of my vegetarian protein dishes. Answer, animal protein makes it easier to get all the essential amino acids. Duh? I know that. I wasn't a vegetarian for 12 years for nothing. And even though I went back to eating fish and some poultry, even going so far this last month to add pork back in, I am not eating any dead cows. I still like a lot of my vegetarian main dishes.

I don't mean to be a problem. But putting together the guidelines I got with the way I cook needs more clarification. Too many things are not covered in the guidelines.

She tells me getting in the calories will be the most important thing. Eat and drink full fat everything. Things I should eat a lot of: cottage cheese, ricotta cheese, milk, ice cream, cheddar cheese, mozzarella cheese, Monterey Jack cheese, canned chicken, canned or frozen beans and corn. She told Mike that he will really have to encourage me to eat. I don't think that I have ever in my life had to be encouraged to eat, but this is new territory. LOL. At the end of our conversation she told me I can go back to eating healthy after all this is over. C'est la vie. I want to do everything as right as I can.

When you are going to be in the OTU at lunchtime the patient is provided with a sack lunch. They gave me a list of sandwiches from which to choose. Sandwiches come on wheat bread and I picked chicken salad. It didn't occur to me until after I was eating it that there was celery in the chicken salad. Now I'm a bit confused about why my dietary guidelines say no raw vegetables, yet they served me raw celery. Will ask about that Friday.

Got all finished and the last thing was my visit with Dr. Kassim. I do like him. There are six transplant doctors and they work on two week shifts. I will see whoever is on call every day that I am at the OTU clinic or in the hospital.

This is pretty much going to be my schedule through Saturday. Everything was finished around noon. Friday I will have a session with Physical Therapy. They need to test my activity level so I'm going to wear some comfy jeans and my Mickey Crocs. On Sunday they will add another drug, so I will be there longer.

I have to say that so far, so good. I have started the new diet and have not begun to have any of the side effects yet.

Apparently I will have many drugs to take orally at home. Donna went ahead and wrote all the prescriptions today. There is an in-house pharmacy, but it takes them a while to get things filled. Mike and I went downstairs to check on them and they said it would be at least another half an hour to get them done. There were 10 different prescriptions and they gave me a month's worth of each. Some of them I don't start taking until later in the program. All these drugs filled up a brown paper bag the size of a grocery store large paper bag!

I can no longer take Tylenol or any painkiller with Tylenol, because of the very real possibility of liver damage when it's combined with all these other things. That means my pain medication had to change from hydrocodone to OxyContin. This is for the pain in my shoulder that may require rotator cuff surgery when I am well from the transplant. We are hopeful the steroids may help as well, since they work as an anti-inflammatory. I do not like to take narcotics unless it is absolutely necessary. I would have taken one on Wednesday night though, as my shoulder was keeping me from sleeping.

Another drug I had to start now is Levaquin (antibiotic). It is given proactively to help prevent any infections, etc. I take that every night. I've also got a prescription for Compazene in case I need something for nausea.

I think that about covered everything for the first day!
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1 comment:

Anonymous said...

It does seem strange both to be told that you will need encouragement to eat at all and to be told to eat all those "fatty" foods. As A heart-surgery patient, I did!

But if you are like me, believe me, you will need encouragement.

So, please let me be among the first: even though I know from personal experience that there will be times that food, meals, eating anything atall will seem like that last thing you want to do, please: eat! It is necessary, it does help, it will even (I hope!) make you feel better after you do so. If all else fails, drink those awful meal-in-a-bottle drinks. I know they are mostly "ingredients" and something no foodie in his or her right mind would consume, but they were (probably quite literally) a life-saver for me. On days when I just could not face solid food, I drank those and got by.

Warm hugs, and eat, eat, eat!

best as always,