Losing Weight Without Trying

I am losing weight. And I'm not supposed to be. My doctors aren't so happy. When I was first diagnosed with a brain tumor, I was given steroids to reduce the swelling. Well steroids also make you really hungry, and it was Christmas time. Bad combination. The house was full of food, and I was ready to eat it all. Needless to say, I put on weight. And since I wasn't really in any shape to work out, I kept it on.

Until a couple of months ago. When I had my first spinal surgery, I started to lose weight in the hospital. That continued with the second, and then third, surgeries. I've lost a substantial amount now. There are some good reasons for that. The first was hospital food. I know that they try hard, but it still amazes me that a hospital that can work medical miracles can't make decent meals. Secondly, I had lost my appetite somewhat. With everything going on, I just didn't feel like eating. And they served dinner at 5:30. Who's ready to eat then? I spent a fair amount of time in Latin America, and lived in Miami. Dinner there starts around 10:00, and I got used to that.

But since I've been home, I thought I was eating a lot. When I started the radiation a week ago, my appetite went down a little, but I still thought I was eating a fair amount. But when I got weighed today, I was shocked. I'm not just skin and bones — far from it. But I've also lost a lot of muscle and just bulk I guess.

Part of this is caused by the disease too. Cancer changes your metabolism. You can eat, but still lose weight. This is a real concern, one that I have to take seriously.

So I've been told to eat a couple of those nutrition shakes a day. It's funny, you may be hungry, but when you're told to eat, that you have to eat, all of a sudden you lose that hunger. I think back to my days as a wrestler in high school. In order to lose weight, I ate one meal a week. Literally. My parents found me sleepwalking out in the kitchen, pulling cans of food out of the cupboards. After that, I was terrified that I would eat in my sleep and not know why I didn't make weight. It was a terrible time.

Now I guess things have come around completely. Maybe I should leave some food out at night in the hopes that I will eat it in my sleep. Who knows, it might work.

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Leroy, keep us posted on how those shakes do. I hope they add a little extra strength for you. I need to pick up some for my husband. The two of you seem to be following a similar path.

You are sounding stronger. I hope you are continueing on with your therapy and that each day is a little easier.

Sent by dorothy in oregon | 9:03 AM | 4-1-2008

Leroy, when my husband was ill he needed to supplement his diet and tried those shakes. He hated them. We tried our own concoction of Ovaltine, milk and ice cream which he really liked. He'd sip on those all day. Wishing you the best, as always.

Sent by Ann | 11:42 AM | 4-1-2008

Last year I lost ten pounds in a fairly short period. It seemed quite freaky, because I was eating what I thought was alot of calorie-dense foods. (This year, diff chemo, who knows why, I have gained it all back.)

One thing that did help me gain a few pounds whenever I ate it regularly was Halvah. Ohh I love Halvah anyway so that was easy for me.

I bet you've already talked with the nutritionist, they always have helpful ideas or at least most of them can help with suggestions.

Good luck with this issue, it's a hard one to deal with because it scares us. I remember that..............just being scared, asking my oncologist why I'd be losing weight when I ate so much. (he didn't have an answer.....)

Sent by Nancy Oliveri | 11:49 AM | 4-1-2008

If it's your taste buds that are not working for you we were told zinc would help that situation. If it is just lack of appetite that's a different story. A gal in the office has breast cancer. She is 67. She does not have any appetite but she is trying real hard to eat things she normally would not if she were healthy hoping it will taste like something (spicy foods, etc) I give her a lot of credit for fighting the way she is. I give a lot of credit to you too my friend because through it all you still write to us and keep us up to date with your life.

Thanks and a big hug from Wisconsin.

God bless you Leroy.

Judy

Sent by Judy Voller | 11:52 AM | 4-1-2008

Leroy,

I lost weight like crazy during radiation. I had 33 days and I lost 2 pounds a week. It was like breast feeding by babies. I was happy at the time because I had put on weight with the steroids they give you with chemo. My radiologist always had a plate of donuts and cookies out for the patients. What kind of doctor puts donuts out? One whose patients are rebuilding their bodies every day to repair what radiation tears down. I think a couple of cheese steaks would be good for you - grill a big steak and you'll have enough for a couple of sammies - some cheese and grilled onions, slap it under the broiler for a minute - yum!

Sent by Marcia | 11:59 AM | 4-1-2008

Thanks Lorey, for all your unique perspectives. You are a very strong man, indeed.

Sent by Navo | 12:02 PM | 4-1-2008

Leroy,

Can you do any exercising at all? I know that it would help your metabolism.

Cancer is certainly a bumpy road, my friend.

Blessings

Sent by Diana Kitch | 12:03 PM | 4-1-2008

I know how you feel. I'm turning into skin and bones and am under hospice care. They don't care what I eat. The nutrition shakes are probably no more beneficial than a good old milk shake - I add some albumin to mine since I lose protein. I'm really enjoying cottage cheese (4% fat) and bulgarian yogurt. Somehow English cukes in yoghurt a a huge treat for me! go figure....good luck. I think of you every day!

Sent by paula kent | 12:04 PM | 4-1-2008

Leroy,
My husband has just completed a winter of daily radiation with weekly Chemo. To keep him from loosing too much weight we made "whole" milk shakes with extra Hersheys syrup and added choco/malted "Instant Breakfast" packets with really great vanilla ice cream... Cheese and Crackers with a glass of wine, whole milk puddings, La Crema yogurts,cookies and a dish of ice cream, egg nog, trying to add things with protein that taste good. We noticed that we needed to do it in smaller amounts so he wouldn't loose his appetite by looking at large portions.
Good luck.. I've gained 20 lbs this winter eating with him- so beware Laurie :o)

Sent by Deb | 12:13 PM | 4-1-2008

I too am going through a period where eating is a chore and I'm losing weight. I recently completed radiation. For me I think it's also worry. I've never been a large person so I don't have much weight to spare before I start to appear unhealthy. I know I have cancer in my body, hopefully the next scans will show response to treatments. But do I have that much cancer in my body to explain weight loss? I have given up on the concept of meals. Instead, I nibble throughout the day. Even have a a bowl of orange serbet in the morning if I'm so inclined. I've never been a big fruit person but I find I can get a cut apple down (chore) or a bowl of cheerios (chore).

I hope your appetite returns soon, even if just in small increments.

Sent by J S M | 12:18 PM | 4-1-2008

Hi Leroy,

I've lost a lot of weight (31% from pre cancer treatment to now over a 2.5 year period), but have been able to maintain my new low weight for the past year by drinking Boost (240 calories). I also drink Boost Plus (360 calories) sometimes. Due to surgeries, my food selection is very narrow. I have a very poor appetite, but I know that maintaining one's weight is important. If I drop a pound or two, I just increase the number of drinks I have per day until I'm back up to my minimally acceptable weight. I don't do it because I like it, I do it because it's good for my health. I hope this helps.

Take care,
Ed

Sent by Ed Steger | 12:33 PM | 4-1-2008

I can barely stand the smell of hospital food much less eat it. On top of that, you are forced into the hospital's three meal schedule. Being at home is easier in that you can eat what you want when you want, at any hour of a 24 hour day. Grazing is sometimes the best way to go for me. What we finally did for my hospital stays was go to Target and for about 50 bucks buy a small dorm style fridge(white). It was shiny and new and blended into the hospital room so well that a lot of nurses didn't notice it for days. When they finally did notice they thought it was a new service the hospital was providing and a great idea. The staff had no issues with it and got a kick out of my wife making a second trip to the car with the wheel chair to bring in the fridge. It really made the stay easier. At 1:00 am I could have a small Apple Juice and a p.b.&j. or whatever I knew would settle my stomach at that moment.

Sent by Scott Fertig | 12:45 PM | 4-1-2008

I read your blog religiously because I can identify with your problems. It is encouraging to know that there are others battling this monster, cancer who have a positive attitude and never give up. When I am down I just remember that there are others who are having a harder battle than I and I have an attitude adjustment. Works wonders.

Sent by Bettie Wolverton | 12:46 PM | 4-1-2008

Hi Leroy!

Eat what you love - make sure there is a combination of healthy carbs, proteins and veggies. Do you have a nutritionist?

Liz L

Sent by Liz L. | 12:50 PM | 4-1-2008

Leroy,

You could write a book about this and become the next fad diet guru: "The Cancer Diet - First, all you have to do is get cancer..."

Maybe not.

Stay strong.

Marshall

Sent by Marshall T. Spriggs | 1:16 PM | 4-1-2008

Leroy,
Love your sense of humor. Although your weight loss is affected by your cancer treatments this is a subject we all can relate to. Most of us are either trying to lose or gain weight. My husband for a different reason is about 110 lbs soaking wet. I buy him those nutritional drinks, but I would like to know why the drinks with 360 calories are never on sale and why they cost more than the ones for 240 calories. Also, as I try to put weight on my spouse I find that I am gaining while he is not, go figure. Both of you hang in there.

Sent by Barb | 1:18 PM | 4-1-2008

Try to remember those years when you were told to watch that extra weight and you had to refrain ! Then jazz up with extra stuff in every "Ensure" or "Boost" you nurse - ice cream;raw egg;more vanilla or chocolate! And use a small glass so it doesn't look so daunting and then just keep refilling.

Sent by Lucy | 1:24 PM | 4-1-2008

Dear Leroy,
I read your blog every day and thank you for writing every day. When my partner was battling lymphoma she also had this problem of losing her appetite, losing weight, etc. It was worrisome for both of us but after a time she began to put some weight back on. She was always athletic and like you, she lost muscle tone because of the decreased activity. So hopefully the weight will come back slowly. I think of you and Laurie so often. You're in my prayers.

Sent by Susan | 1:26 PM | 4-1-2008

Dukes mayo. Thats the answer. Lots of Dukes mayo sandwiches. If want to eat somewhat healthy, have a "mater", dukes mayo and white bread sandwich.

Sent by sarah | 1:27 PM | 4-1-2008

Hope you find your interest in eating again. It will come in time. I am sure you can stand to lose a little in the meantime.
Milkshakes are a great treat.I look forward to your posts everyday, so thanks. May the Lords grace shine on you.

Sent by Hal | 1:39 PM | 4-1-2008

My husband had the same problem. He lost weight no matter what we did. He had no appetite either. Finally a friend suggested root beer floats - it worked. He had about four root beer floats a day!!!! He had no sense of taste or smell but he thought he could get some kind of sensation with the cold ice cream. So my suggestion - root beer floats!!! I don't know about where you live - but here in Michigan the A&W and the DQ just opened back up for the spring and summer months.

Sent by Deb from Michigan | 1:53 PM | 4-1-2008

I'll take a Starbuck Frappucino loaded with whip cream over one of those "nutritional drinks" any day. Plus the caffeine helps a little bit with chemo fatigue. But it is hard to make yourself eat when you don't want to, which is a problem I've had on the chemo. Everything smells and tastes bad except 3-4 things. I've eaten enough baked potatoes to support Idaho farmers.
My big thing is getting over guilt from eating "bad" foods. I have decided I will eat anything that appeals to me, whenever I want, whether it's mealtime or not. Unfortunately when you are in the hospital long periods as you were you are at their nutritional mercy!
Again, thank you for providing a voice for us cancer patients. Just one thing - can we somehow make it required reading for people NOT touched by cancer so they can get some idea of the huge need to cure this beast or find better treatments?

Sent by Marcia Greer | 2:04 PM | 4-1-2008

my mom also hated those shakes. she was seriously addicted to vanilla flavored carnation instant breakfast, though, so she filled in on that. (h/t to my sister for remembering that and buying several boxes for her!)

re. ensure: i've heard that there's a coffee flavor that's pretty decent. ('course you have to like coffee.)

Sent by mary | 2:15 PM | 4-1-2008

Ok, everyone has been serious and helpful in their comments. It's left up to me to say this MUST be a result of your entry yesterday about chocolate!! See, it never pays to make the slightest negative remark about the most marvelous food known to man. You'd better start on CHOCOLATE protein shakes.(Xymogen makes the best tasting whey powder for protein shakes and is pharmacetical grade)

Sent by Susan | 2:52 PM | 4-1-2008

Hi Leroy,
My mom was prescribed the appetite stimulant, Megace, and it really helped boost her hunger and desire for food. When she developed mouth sores from the chemo and found it difficult to eat then, she drank those nutrition shakes but also added other things like ice cream so they would taste better. Take care.

Sent by Teresa from Missouri | 3:03 PM | 4-1-2008

Dear Leroy,

I continue to think of you always. May God Bless you.

Sent by Connie | 3:08 PM | 4-1-2008

Leroy, Those shakes are for old people!!, not us, or have we become the old people. I don't think so, but I am hardly qualified to judge. Leave the cookie jar open when you go to bed, or hell just take it with you!! I won't tell. Thoughts, Stan

Sent by Stan Wozniak | 3:17 PM | 4-1-2008

We've been through the weight loss drill with an elderly relative who had a lot of medical problems. At one point she was given anti depressants to help with pain and sleeping. In her case, it caused her to completely lose her appetite and feel nauseated by food. It took a while to figure out that the drug was doing that. We had a hard time finding shakes she would drink, but Ensure makes a coffee-flavored one that would work. Problem is they don't stock it in most stores. However you can buy it from Walgreens online, and we have even gotten free shipping so that it's the same price as buying it at the drugstore. The main thing that is in the shakes is whey (milk) protein and added vitamins/minerals. A lot of people make their own shake (or amplify an existing shake) with milk plus powdered milk, or milk plus bodybuilder's protein powder (often soy). In my opinion, mixing in frozen fruit for a smoothie goes a long way to making these more enjoyable.

Puddings did not go over well with our relative, however custard did. Pumpkin pie and key lime pie are essentially custards with flavoring, and I found that they could be baked in small ramekins (with or without a crust) and serve as good snacks to help with gaining. If I was in this situation, I'd be reaching for the rice pudding, but that's just me!

A final thought is that at one point, a doctor suggested it might get to the point where medical marijuana was an option. Apparently it does help patients regain their appetite. We didn't get to this point, but it might be something to consider.

Sent by Celeste | 3:48 PM | 4-1-2008

In case I need to justify my right to comment, my husband was diagnosed with metastatic colon cancer last year. Leroy's comments every day have kept me grounded, given me hope in the middle of despair, and made me despair in the middle of hope. Speaking of metabolism my husband is a Type II diabetic whose Hgb A1C is now 5.0 due to the cancer. I.E. he has cancer but can eat cake. Go figure. Speaking of hospital food I have to brag on MD Anderson in Houston. My husband was there for liver resection by the great Dr. Stephen Curley. Sadly, they found more mets in his liver and abdomen so couldn't do the surgery. BUT we discovered how hospital meals CAN be done. They have a menu like a restaurant. Wide variety of food, good food. You can have anything you want any time of the day or night. There are no trays at 7a, 12n and 5p. It's like room service. Call 'em up, tell 'em what you want, even guest trays for the one who sits by the bed at very nominal cost. In about 20 minutes a waitstaff person dressed in black and white shows up with a lovely tray. Now that's the way it should be done. I could brag forever. Ask me about preconstruction meetings for contractors working in the area. Anyway, this is the first time in a year I've posted. Don't know why now. Thanks, Leroy, for helping me keep my chin up and sharing your life with us. Eat on, brother.
bc

Sent by Barbara Chaviers | 3:52 PM | 4-1-2008

Leroy,
I always remember the taste of the milkshakes my mom used to make me when I was sick as a child: lots of ice-cold whole milk, chocolate ice cream, a scoop of chocolate ovaltine and a handful of chopped ice in the blender. The year I had a case of mono so badly that they thought it was leukemia at one point, she'd throw in an egg for the extra protein. Sigh. Now I gain weight just thinking about that kind of stuff. (I'm still trying to figure out how that one darn slice of ricotta pie from Arthur Avenue that I had on Easter Sunday ended up on my hips so fast!)
I think of you often, and with gratitude.
Stay around, my friend.

Sent by Susan Crawford | 3:56 PM | 4-1-2008

I can identify with your displeasure over those ugly, non-fitting hospital gowns. They're depressing and don't lift your spirits. Several years ago I had radiation treatments after breast cancer surgery. Members of my quilt group made a hospital-type gown for me in a cheerful flannel fabric. I took it with me to every session and wearing that gown with its bright colors and the knowledge that my friends cared about me made the sessions a bit easier to get through.
Recently you wrote about what to give to a person with cancer. Here's one idea: make them a hospital gown that fits and shows you care. I hope someone you know will make such a gown for you.
God bless.

Sent by Kathryn Hill | 4:39 PM | 4-1-2008

Continue with the protein shakes but add your favorite stuff to them. I tried medical marijuana (pills) and also Ritalin (works in adults to give you energy and hence an appetite. Neither worked for me but they are worth a try. Maybe pick a flavor of ice cream that you love, one with an overdose of butter fat and add it to your shake!!

Continue to seek what works for you. Blessings and prayers.

Sent by Al Cato | 4:41 PM | 4-1-2008

I made protein shakes for my mom, after the doctor said she had to gain weight. Mom was a little person, 4'11", weighing around 90. I made the shakes with protein powder, ice cream and fresh fruit. She loved them and did gain weight. The doctor was amazed, especially because my mom had such a small appetite under normal circumstances. Mom made it through and died later but not from her cancer. So, eat---uh, drink up!

Sent by Townie | 4:56 PM | 4-1-2008

Cancer is so unfair. There you are losing weight you need. Here I am, 20 pounds heavier since my diagnosis 6 months ago. When I first found out I would have to have chemo, I thought " Oh well, maybe I will finally lose the 30 pounds I have gained over the last few years.". NOT. I tell everyone I am " beefing up" in prep for the next round....
Have a banana split for me would ya??

Sent by Theresa Lovin | 5:35 PM | 4-1-2008

Oh Leroy, I would so love to send you about 20 of my pounds. Yes, those shakes may make you feel full all of the time. But you gotta do what you gotta do. I have the opposite problem, in that some of my drugs (not steroids, though) to treat side effects had me wanting to eat everything in sight. I had to take them for nearly a year. Now three months off of those drugs, and exercising, I've been unable to lose any of the weight. There is a part of me that thinks I need to retain a few extra pounds for my inevitable recurrence. I know that I am whining compared to your serious situation; but, thanks for letting me vent.

Sent by Sheara | 5:36 PM | 4-1-2008

I've been prescribed Megace (appetite stimulant) as well and it does work. I still can't eat as much as I once did - losing weight - some was needed but wishing not so fast.

I eat whatever appeals to me now too. This past weekend, I ate Salt/Vinegar chips and V8 juice. What a combo! :-)

Sent by Vicky (NY) | 5:37 PM | 4-1-2008

Leroy,
Your post brought back memories of all the milkshakes (with fruit and/or Boost) that I made for Leon, trying to keep his weight up. Somehow I thought the cancer can't win if he doesn't lose weight. Wrong! But I am thankful that he didn't lose a lot of weight, feel much pain, or lose his fighting spirit.
It will be a year next week...I miss making those milkshakes so much! So, Laurie--feed him, hug him, and love him every minute of every day.
Prayers for you both,
Jane

Sent by Jane from Arkansas | 6:57 PM | 4-1-2008

I don't know your opinion on medical marijuana, but it seems to me; now would be the perfect time and reason for its use.

Sent by Leah | 6:59 PM | 4-1-2008

Good evening,

Leroy... small frequent meals, snacks, high carb and protein. Chemo and radiation do alter how food tastes. Stock up on fattening treats too. I would like to lose weight, not that way of course.

Dad is seems to free of pain, a Lidoderm patch, he is unresponsive now. The hospice nurse sent the "comfort box." About the size of a kleenex box, and it contains heavy drugs, just in case. There is a label on do not open with permission.

It is a tender quiet time now.

Sent by Sue Chap | 7:02 PM | 4-1-2008

Leroy;
After my wife died from cancer, I quit reading your blog. It was too hard to follow along. I've pulled it together and now I can muster the empathy and some clarity. All I can tell you is... force yourself to eat. I lost my sister to lupus and my wife to metastatic cancer (of unknown primary), and having watched that process, I can say that the will to live is coupled with the desire to sustain your body. In both cases... my sister's and my wife's, once they quit eating, the end was not too far off. They were both young: 40 and 46. That's all I can add right now. You are truly in combat... fight the good fight, and Godspeed.

Sent by David Stevens, Bozeman, Montana | 9:05 PM | 4-1-2008

Dear Leroy, I've been reading your blog from the beginning but I've never written. I bet there are a lot of people like me, essentially shy and private.

I helped my parents through cancer and death and I have helped many people deal with the disabling effects of cancer in one way or another. Somehow today, I thought I'd write to thank you for your wonderful writing and the huge risk you have taken so that all of us can know more about your struggle with cancer. After all,as much as the blog has to do with your unique experience, it also has many universal aspects.

I am sorry for that you have to undergo so many of what my father called the "indignities and miseries" of cancer and that you've had to suffer the terrible loss of your mother in the midst of it all. You are courageous in your fight and I believe you will be courageous in your acceptance of whatever comes down the road whether that be another loss or another reprieve. So, thank you again for the gift of your fine writing about your travels in the war zones of the cancer world. Wendy

Sent by Wendy | 9:49 PM | 4-1-2008

Leroy,
You have not mentioned this, but I am worried that the radiation is messing with your belly. I know you spare us the personal details, but that radiation does a number on your digestive tract. It sure makes you want to stop eating.
So, take whatever medicine they can give you to take care of whatever symptoms you might be suffering (I cannot thank the scientists that developed Immodium enough) and eat a little at a time all the time.
The nutritionist said told me to eat protein to build up the skin and, when things tasted funny, use barbeque sauce or lemon juice to jumpstart your tastebuds. I love BBQ sauce on everything now.

I am quite sure I am the only cancer patient to gain weight while in treatment.

Eat. Drink. Eat again. Buy any food you like, no matter the cost. Time for lobster.

PS Last year, I told you about my student, age 10 who was in treatment for osteosarcoma, after 2 bouts with leukemia. She is back in school, back playing softball, and growing hair. She is fighting like hell, against all odds, and is doing well.

Sent by Robin | 10:09 PM | 4-1-2008

Sick or not, this is a great easy healthy snack:
- Keep frozen peeled bananas and bags of frozen peaches and/or berries in your freezer.
- Choose a frozen fruit to put in your blender.
- Cover the fruit with milk or soy milk. This can be chocolate or vanilla. Chocolate/banana or peach/vanilla are wonderful.
Add a scoop of protein powder if you like.
Blend for a great smoothie.

Sent by Laura | 10:28 PM | 4-1-2008

Leroy writes that cancer changes the metabolism. Is it cancer or the chemo that does that? I'm five months post stem cell transplant, and I still about 10 pounds underweight and can't pack on pounds, even though I have the appetite of a long-haul trucker.

Sent by susan c | 2:07 AM | 4-2-2008

The suggestion by Laura sounds good, but you got me to thinking about milkshakes. We were out to the eye doctor and I had my wife stop at the Chick--fil-a for a cookies and cream milkshake, they are great. Before this weight loss debacle they were off limits. May the Lords grace shine on you.

Sent by Hal | 11:04 AM | 4-2-2008

My internet was down a few days-- what a lot to catch up on. You are nothing but wonderful- hang in there.

Sent by linda h. | 8:34 PM | 4-2-2008

If you're losing weight against your will during late-stage cancer treatment, you may be suffering from "cancer cachexia". Here are a few articles:

http://www.oncolink.org/resources/article.cfm?c=3&s=38&ss=164&id=828

http://www.ncbi.nlm.nih.gov/pubmed/3292798

http://www.cancerhelp.org.uk/help/default.asp?page=10428#cachexia

Sent by Shin | 3:32 PM | 4-4-2008

I suggest that Mr Sievers focus his remaining strength on his chances for recovery, by reading about the German New Medicine, instead of his sure slide toward certain death at the hands of the cancer industry.

Sent by Brian Whittemore | 11:42 AM | 4-14-2008

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