Yikes! Dietary restrictions....

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Yikes! Dietary restrictions....

Postby Mike Filigenzi » Tue Feb 12, 2013 10:59 pm

So last May, I was diagnosed with multiple myeloma, a type of bone marrow cancer. It's not considered curable but it is treatable. One doctor told me to think of it like diabetes – I will likely be on various treatments for it for the rest of my life, but those treatments should keep it under control. They found it before I became symptomatic and I'm otherwise very healthy, so my prognosis is pretty good. Since the diagnosis, I've been on a couple of different medications for it that have worked well and, importantly, have had no impact on my ability to eat and drink as I wish. I've kept drinking my cocktails and my wine and I've eaten whatever I want, so I haven't mentioned it here until now. (I do know that some of you here would have wanted to know this sooner and I very much appreciate that, but it's just such a buzzkill to bring it up. I don't mind talking about it in the least, though, so don't hesitate to PM or email me if you have any questions or advice to offer.)

The standard treatment for myeloma for someone my age is what's called an autologous stem cell transplant. It involves filtering cells out of my bloodstream, then nuking my bone marrow with a single, high dose of a chemotherapy agent, and then putting those cells back in. Once the cells get back into my bloodstream, they'll go back into the bone marrow, set up shop, and start producing all of the different cells that bone marrow normally produces. It's a very safe procedure with one significant caveat: between the time the bone marrow gets scorched and the time the cells get everything back into production, I'll be lacking a functioning immune system. For the first three weeks or so, I'll be in a special hospital room with filtered air, limited access, etc. (although I can have visitors as long as they're healthy). Once my immune system starts functioning at a minimal level, they'll send me home where I'll continue to recuperate for another couple of months before they'll let me go back to work.

So why do I bring this up now? I started my hospital stay this morning (and in fact have already received my whomping big dose of chemotherapy). A few minutes ago, the dietician walked in and gave me a talk regarding eating and drinking while severely immunocompromised. Yes, for the first time, this wretched disease will actually affect what I can eat! Not only am I in a place where they will not let me have my evening cocktail or wine, I will also have to worry about everything I put in my mouth! As Dr. Zachary Smith would have said, “Oh the pain, the pain of it all.”

So what are the limitations? First off, meat must be cooked to well done. Meaning inedible. That's any fresh meat, of course. Even cold cuts that are bought in sealed packages must be heated until steaming before they go onto a sandwich. (Deli counter cold cuts are not allowed at all.) Fish must be cooked to well done. Meaning inedible. Cheeses are restricted to commercially packaged, pasteurized hard and soft cheeses. No buying sliced cheese from the deli. Soft cheese such as brie must be cooked before being eaten. Bleu or any other moldy cheese is out of the question. Any sauce or dressing with raw egg in it or any eggs that are not cooked hard are verboten. Ironically, highly processed foods, like Cheez-whiz and Spam are just fine. Pasteurized tofu is encouraged.

On the other hand, there's a lot that's not terribly restrictive. Well-washed fruits and vegetables are fine. Baked goods that don't have custard in them are good. Just about any bread, grain, or cereal product is also on the acceptable list.

I'm already looking into ways to deal with the hospital food situation. My wife will be able to supply cookies and other baked snacks while I'm here, which should help to keep both my calorie count and spirits up. I only get one cup of coffee for breakfast, but I think we'll be able to bring a coffee maker in as long as we use bottled water in it. Being able to have good coffee every morning will be another big factor in me staying happy while in my enforced isolation.

So for the next few weeks, I'll not be posting much in the “What's Cooking?” thread. After that, I'll be looking at ways to eat well while having to strenuously watch for any chance of microbial contamination. It should be an interesting next few months.

"An expert is a man who has made all the mistakes which can be made, in a very narrow field" - Niels Bohr
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Re: Yikes! Dietary restrictions....

Postby Jeff Grossman/NYC » Tue Feb 12, 2013 11:13 pm

Oh, my. Best of luck with the re-colonizing of your marrow.

I had a thought about how to make well-done beef edible again: shred and make Sloppy Joe.

As to the other, um, how are you on gefilte fish? :)
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Re: Yikes! Dietary restrictions....

Postby Christina Georgina » Wed Feb 13, 2013 12:11 am

Best wishes Mike. Look forward to your observations on the germ free vittles. From you description, not sure food is the right word !
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Re: Yikes! Dietary restrictions....

Postby Karen/NoCA » Wed Feb 13, 2013 12:20 am

Such a beautiful person you are.....I do not know what to say at this point.... other than I am sad and wish you the best of everything
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Re: Yikes! Dietary restrictions....

Postby Robin Garr » Wed Feb 13, 2013 12:34 am

Mike, best wishes to you on this road. I'm sure all your friends here, like you and your family, I'm sure, are heavily focused on the terms you wrote along the lines of "treatable" and "medications have worked well" and "under control." Warm thoughts and prayers for you and yours.
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Re: Yikes! Dietary restrictions....

Postby Mike Filigenzi » Wed Feb 13, 2013 12:50 am

Thanks, everyone! This is certainly a strange situation for someone like me, who's always been quite healthy. Tonight is actually the first night I've ever spent in a hospital. But again, it is something I expect to do very well with. All indications are that it will be controlled for the long term, with little impact on quality of life.

Given the requirement to cook all meat well done, I'll likely become a vegetarian for the next few months. When I think of that in terms of the vegetarian dishes that are posted here, that doesn't really seem bad at all!

"An expert is a man who has made all the mistakes which can be made, in a very narrow field" - Niels Bohr
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Re: Yikes! Dietary restrictions....

Postby Jim Cassidy » Wed Feb 13, 2013 3:07 am

Ow!

Any restrictions after the first few months?

And I'm with Jeff... Shredded is only one way to enjoy braised beef!
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Re: Yikes! Dietary restrictions....

Postby Mike Bowlin » Wed Feb 13, 2013 3:13 am

I wish you luck and future good health. Please visit the Nestles Nutrition Store. A great place for supplements.
http://www.nestlenutritionstore.com/?PR ... aign=BRAND^Nestle
Thanks,
Mike
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Re: Yikes! Dietary restrictions....

Postby Howie Hart » Wed Feb 13, 2013 5:46 am

Best of luck to you Mike.
Chico - Hey! This Bottle is empty!
Groucho - That's because it's dry Champagne.
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Re: Yikes! Dietary restrictions....

Postby Shaji M » Wed Feb 13, 2013 9:27 am

Mike,
Wish you a speedy recovery and good health!
-Shaji
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Re: Yikes! Dietary restrictions....

Postby Jo Ann Henderson » Wed Feb 13, 2013 11:49 am

First: :shock: Then: :?
I'm pretty sure you are working with a nutritionist who will walk you through all of this. However, one of the resources in the facility I run is a Human Nutrition Lab which produces meals for people in all manner of restrictions related to cancer (but for research purposes). I'm certain they have some recipes they recommend for people with well honed palates who would find it difficult (to say the least) under these conditions. I'll ask around and post anything I think might pique your interest. In the meantime, I'm thinking a salad with duck confit at least once a week. The duck is certainly well done, but tasty! Best of luck to you. Again, :?
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Re: Yikes! Dietary restrictions....

Postby Redwinger » Wed Feb 13, 2013 12:13 pm

Mike,
Best wishes for a full and speedy recovery.
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Re: Yikes! Dietary restrictions....

Postby Tom Troiano » Wed Feb 13, 2013 12:38 pm

Yikes!!!

Best wishes and I will keep you in my prayers.

what's the outlook for wine drinking?

and sorry to hear about the well done meat!
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Re: Yikes! Dietary restrictions....

Postby Susan B » Wed Feb 13, 2013 12:51 pm

I am impressed by your attitude. I know from experience that it makes a huge difference. You've got it right. My best wishes for a successful recolonization.

As for food, think oven roasted veggies with various meats. They are usually very well done, carmelized and delicious. Just a few I've tried lately: Brussel sprout, apple and bacon hash, Italian sausages with acorn squash and onions, rib eye with horseradish butter and root vegetables. Then there are risottos and pastas.
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Re: Yikes! Dietary restrictions....

Postby Mike Filigenzi » Wed Feb 13, 2013 1:25 pm

Thanks again, everyone, for all of the good thoughts and ideas. I hadn't thought of braised meat dishes right off the bat, so that's perfect. It's a prep I know well and usually love. Duck confit salads - Yum! We usually roast our meats more to medium rare, but with the right vegetables, I could see that working with more well done meat.

I don't know about the wine angle yet. It's possible I won't really want any for a few weeks after getting out of here. I don't think it will be a restricted item, though. Heck most wine is probably as clean or cleaner than than bottled water.

Just heard an ominous thing this morning - apparently your sense of taste and smell can get pretty messed up right after this procedure, to the point that some things you normally love will make you nauseous. It's temporary, thank goodness! During that time, though, you have to avoid such foods so that you don't develop a longer-term negative association with them. As long as it's not wine or coffee, I'll handle it!

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Re: Yikes! Dietary restrictions....

Postby Dale Williams » Wed Feb 13, 2013 2:44 pm

Mike, sorry to hear of your travails, but wishing you a speedy recovery. For those of us who focus so much on food and drink, the restrictions are scary. But you have a great attitude and in the scheme of things a few months with these restrictions are a small price for health. Some great ideas here for vegetarian food and braised meats. Best wishes!
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Re: Yikes! Dietary restrictions....

Postby Jenise » Wed Feb 13, 2013 5:32 pm

Mike, your message leaves me at a loss for words. I feel so bad for you and for your family who I mention because when one among you has cancer you ALL have cancer. Dealing with it is a collective effort, and it's with a heavy heart that those of us already there welcome new patients into the fold. So it's like "Welcome, but we wish you weren't here" in the best way possible.

The restrictions you have are interestingly draconian. But as others point out braised foods include a lot of interesting variations. With little rethinking them required, Mexican fare like Tacos and burritos and Asian dumplings would be quite acceptable. But you're right about the effects of chemo and the aversion problem. Garlic is often a culprit.

All the best to you in dealing with this, Mike, and big hugs.
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Re: Yikes! Dietary restrictions....

Postby Fred Sipe » Wed Feb 13, 2013 6:44 pm

Hi Mike, don't know you personally but I always look forward to your thoughtful posts. I wish you all the best in a tough situation.

My cousin (we grew up more like brothers) just went through this very thing for a form of Leukemia and it's no picnic but in the end he's no worse for it and it did what it was supposed to do.

I'm sure you will do just fine with your realistic attitude and sooner than you can imagine this will be a distant memory.

Hang tough.
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Re: Yikes! Dietary restrictions....

Postby Carl Eppig » Wed Feb 13, 2013 7:18 pm

Good luck Mike, you're in my prayers. I've been trying to understand the "why" of these restrictions. I guess it has to do with being sure no germs get into your blood stream.
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Re: Yikes! Dietary restrictions....

Postby Mike Filigenzi » Wed Feb 13, 2013 7:29 pm

And thanks yet again to all of you!

Fred - Nice to hear your cousin did well. As you say, it's one of those things that is not much fun but which only involves short-term discomfort for long-term gain. A healthy and tasty diet will go a long ways to easing the discomfort as well as shortening the recovery time. As always, I'll be getting a lot of ideas right here, and I'll certainly report back on how they work out. As Jenise mentioned, Mexican's a good way to go. Heck, carnitas gets cooked twice! That ought to kill any lurking pathogens.

"An expert is a man who has made all the mistakes which can be made, in a very narrow field" - Niels Bohr
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Re: Yikes! Dietary restrictions....

Postby Mark Lipton » Wed Feb 13, 2013 8:15 pm

Mike,
I'm so sorry to hear of your medical woes and wish you the best in your path to recovery. Certainly, the culinary aspects of your condition are no fun. In addition to what's been mentioned before, I'll just add to beware of uncooked vegetables and certain fruits, as they can harbor bacterial pathogens. Washing fruit and vegetables, sad to say, isn't very effective at getting rid of them, either. You're sort of like a traveler in a third world country at this point: be wary of any uncooked (or undercooked) food. Fortunately, any fruit with a rind is safe, and cooked veggies are just fine, too.

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Re: Yikes! Dietary restrictions....

Postby Redwinger » Wed Feb 13, 2013 11:52 pm

Mike-
If you're going to be in there for a few weeks, please start a thread about "what they fed. or tried to feed me, today".
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Re: Yikes! Dietary restrictions....

Postby Mike Filigenzi » Thu Feb 14, 2013 12:25 am

Mark - Interesting that you brought the issue up regarding fresh vegetables. The dietary guidelines I was given indicate that these are fine as long as they're "well washed". I had pretty much decided I wasn't going to rely on that. Greens in salads will be off my list for a while, whether they're well washed or not. My greens will be in the form of chard, kale, etc., cooked and put in pasta or risotto or something like that. A bout of salmonella poisoning would be a very bad thing for me for the next few months.

Winger - Will do.

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Re: Yikes! Dietary restrictions....

Postby Brian K Miller » Thu Feb 14, 2013 12:58 pm

Best wishes, Mike. You are being very brave about this. :shock:
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