Dave dropped 40 pounds before he even started treatment! Fear and pain is not a recommended weight loss program, but it certainly worked wonders on Dave! Except that wasn’t planned or desired.
Once he started treatment, both on the oral chemotherapy (Thalidomide/Dex) and then eventually the BIG STUFF for Stem Cell collection and transplants, along with “in between” chemo regimens, food intake was problematic and excessive sleep was the norm.
As caregivers, we are desperate to get them to EAT! Desperate to get them OUT OF BED! Its extremely scary and frustrating. If you are married, or its a parent, sometimes the “baggage” we have in our relationships can become quite ugly. We can get angry and snide. Its the LAST THING our loved one needs us to do.
A very dear friend, and she would have to be in order to say this to me… put me on a “CEASE & DESIST NON-HARRASMENT ORDER!” No nagging, no anger, no insults, nothing! WHAT!? Are you kidding me? I reticently agreed. I was not happy. But what I was doing was clearly not creating the desired effect. In fact, she argued, I was making it worse and harder on Dave. He had enough to deal with without me haranguing on him. OK, OK, I get it, but, but, but, he’s not eating, he sleeps all day, what about his strength, his nutrition, he’s withering away!!!? What do I do about that?
This is what I did and what WE did.
He really couldn’t bring himself to eat. He was in pain, he was afraid, food tasted funny, textures grossed him out. He was nauseous. In Dave’s case because of the morphine pain killers, he was terribly constipated. What was going in wasn’t coming out, which made him feel full and bloated and uncomfortable. The emotional toll of not being able to go to the bathroom was grueling for him. The PILLS, all the pills he had to take were gagging him. Vitamins, antibiotics, stool softeners, upset stomach medicine, the list goes on and on. Drink more water we were told. He couldn’t do that either. Take walks, nope, not happening. It was hard not to compare Dave, who was relatively younger than many of the patients. They seemed to be doing better. They were walking faster, they were, they were, they were… I even heard one patient was walking up and down the 7 flights of stairs to the transplant center every day! GEEZUS! Dave could barely get out of bed and make it to the bathroom which was only several steps away! I was told “fatigue” during chemo was found to be psychological. Damn it! There was a lot for me to get worked up about. I was trying to save his life and he was doing NOTHING to help me. Or so it seemed.
Those of you who have been there, clearly understand these challenges. They really TEST you.
Alright, so I asked Dave, “What” could he eat? He became emotional.. “I don’t know!” He was just as frustrated as I was. Things he loved his whole life he couldn’t stand the smell of or the way it felt on his tongue. Certain old standbys made him feel like throwing up just to look at them let alone eat them. OK. So we struck up a deal. He was to eat anything he wanted, what ever he could enjoy or tolerate. In the beginning it was really just ice cream and sugar crap of little nutritional value. It went against everything I believed he needed to do, but I decided it was just going to have to be OK. I did have a protein powder I liked and so I would make him shakes. He could tolerate them and we experimented with berries and bananas and different things in them, AND ICE CREAM added too. At least he was getting some protein. The other part of the deal was this… I would make things and he would try them. If he could eat them he would, if he couldn’t he would freely tell me, without insult, just fact. I promised I would not be frustrated or angry at all the hard work I put into creating something for him to eat, but we would just be on this food adventure together. It worked great. Now he wasn’t eating well, but he was eating something and I just had to validate his efforts and he validated mine. He would thank me for trying and I would thank him for making the effort too. We simply refused to make each other wrong for our failures to get the desired result, which was food in his body. I also scaled down his proportions and made them very small. He could actually get overwhelmed by a normal amount of food and it also allowed him to feel successful. When I might have cut up a whole apple and some cheese for a snack, now it was two slices of apple with cheese. He could confront that easier.
Little by little we began to have more success. I became a soup maven. And these were soups that would put pounds on you! (Problem was I was the only one gaining weight for awhile!) He began to love them and I got quite a collection of recipes. Instead of milks I would use creams. Instead of big chunks of veggies or meats I would chop them finely and the put 3/4s of the soup in the blender, puree it, and put it back in. Brown rice was added often to give him his fiber. It became our staple.
The point is, to understand that the chemotherapy drugs are profoundly brutal on the body. They lose appetite, taste buds, energy. They can get ringing in the ears, and a whole host of other things. Dave didn’t shave his head right away and his hair follicles began to hurt his head if he moved them – turning his head on the pillow or running his fingers through his hair, even pulling his shirt on hurt his head. Each patient has their issues. Some are real and some are imagined, but whichever it is, it is what it is for them. He wasn’t being mean to me by sleeping and not eating. He just felt like total, utter crap. My point of view on what I could do and how I would do it had to change to better match where he was and how he felt. It wasn’t easy for me. I’ll be honest, I don’t take feeling sorry for oneself or what I perceive as weakness very well in people that I love. That was MY challenge in this. Dealing with my own crap and not laying it on Dave, he had quite enough of his own. Somehow we managed and while the cease and desist order was one of the hardest things I have ever done, it was indeed the best thing I ever did to help us both get through it in one piece with some affinity still intact!
Advice – definitely no nagging, anger or frustration is the better road. Be gentle, let them know its OK and that the two of you will just keep trying and help each other. A few times Dave apologized that he was sleeping so much and leaving me alone. I would respond, “No, no, its really good, its what you need, don’t worry about me, I’m fine.” Reassuring him became my mission and it freed him to do whatever he needed to.
Talk to other patients and caregivers whenever you can. Be forthright and honest about your concerns, you will learn from them. You will discover another patient will tell you how hard it is for them to eat and how much they sleep and how awful they feel for their loved one. You will learn from another caregiver their frustrations are similar to yours and what has been helpful for them that you might try. Nurses can be immensely comforting when you learn that this is normal and different things you can try. “Misery loves company” is indeed true. I don’t think its so much that we relish misery or want others to experience it with us, but it is indeed comforting to learn you are not alone in what you are dealing with. Read up on some of these things so you understand it is part of the experience and above all, keep trying… coupled with as much understanding as one can have without being blasted with chemo and tubes coming out of your chest!
My favorite book (look under my Books Tab) is by Patrick Quillin, Beating Cancer with Nutrition. It is a common sense approach to food and I simply began to add better and better things to Dave’s diet while never taking anything he could eat away. He wouldn’t be able to handle it emotionally if I restricted him. The more I added the good stuff, the more the less healthy stuff began to disappear from his diet of his own accord – which has the most staying power.