Crying for Cabbage

Tonight I actually started crying when Pat ate her dinner. I was so jealous. She sat down to eat some sauteed cabbage, carrots and chicken. Not exactly gourmet, but compared to the Ensure and the anti-gas pill I was consuming...and it smelled so good. I realize now that I haven't had a real meal since I was in the hospital five weeks ago. Sure, I've had my soups and my beef broth with an egg, but my soul wants a plate. A plate with whole foods on it that I can bite into and chew. Ah, to chew, what a thought.

There are two problems. One is the blockage by the big tumor in my colon which means not much can pass through. I won't go into too much detail, but you get the picture. The theory is when the tumor shrinks, the area for what used to be food to pass through would get bigger, thereby making eating easier. There is also the real chance that this part of my colon will actually shrink with the tumor, then I will be in exactly the same predicament as I am now. Time will tell.

Problem number two is the gas. And we've talked about this before. An indelicate subject, but one we all know intimately. The place where the tumor is sometimes blocks the gas from getting to where is needs to go - which is out. So I take an anti-gas pill four times a day. They help a ton, but there is still enough air movement to make Pat turn her head and Bennett to ask if there is thunder in there (a direct quote from last night).  And it does hurt sometimes. Not like it used to, but if I am not super careful about what I eat, when I eat, how much etc., I can get into some real trouble, which really scares me.

And it makes me so sad. Sadder than I thought it would. I guess it's a little like my hair. I didn't think it would bother me, but it really does in a deep and troubling way. I knew the cancer would really bother me, but I just assumed the hair and the food and the fatigue would just be sort of incidental. I knew my life would change, but not so thoroughly. I am not sure what I was thinking. I guess there is no way to know until you get here. I can talk to as many people as I want who've made it to the other side, but I can't know what my journey, my response, will be until I am there.  Sometimes it is as big a surprise to me as it is to you.

I Got It!

Nineteen days after my last treatment, I finally got some chemo. I am so glad to be sitting here with my pump that Bennett says sounds like a kitty meowing. I have been sneezing all evening, and remember the last time the same thing happened. Could it be another strange side effect?

There was a do or die moment - my WBC were only 1300, they usually want them to be 1500 for treatment, but because they turned me away last week, they made an exception. I am prepared to feel slammed down after this treatment, especially staring with lower WBCs. I am hoping not to and have a list of things I would like to get done tomorrow, but if my love quilt calls my name, I will be under it.

I have an appointment with Dr B on Wednesday. I heard the nurse tell him I was asking for Neulasta. Instead he lowered the does of Irinotecan. I cried. I don't like it when they "dose reduce." I know they are trying to find the most effective dose for MY body, but I don't want less medicine, I want this to be big medicine. My sage friend Ruth reminded me that sometimes the biggest tool is not the most effective - sometimes the little hammer is what you need to do the job with the most precision. I will work on adopting that philosophy.

What am I going to do tomorrow? Pick up meds, work on glass and walk the dog. These are my goals- if I can do them. Try to get enough calories. I must be doing something right because I weighed exactly what I weighed last week - 99kg. That is 217 - I started this process at 245, so I still feel like I need to keep the calories up up up. It's not that easy because I have a weird taste in my mouth, my mouth always feels dry and my belly is so picky. I had to eliminate tuna with mayo (protein and fat galore) because I realized it was the thing that was giving me so much gas that my belly made the bed springs shake. Good news though, is that polenta seems to agree with me and I love polenta. It's so strange what becomes important when you can't really eat. Honestly, I wouldn't eat half what I force down if I didn't have to. The Ensures are becoming my mainstays and that is saying something. I think I already said that I just think of them like medicine and that makes them go down easier. Now I just wish they didn't cost an arm and a leg...

Time for bed. I am praying for an easy sleep, energy for tomorrow, power and courage. Pray with me, will you?

Back Down - Shouldn't Gamble

Lesson learned. I am in some sort of fight with the gas again. It's totally distracting and pretty much completely consuming. I am trying all the tricks, to no avail. I am sure after the medication I just took (not pain killers) will kick in. I just wish there was a way to survive without eating.

Mary and Libby are here trying their very best to figure out what to cook me to entice me to eat. Ha! Everything sounds hideous. How can a champion eater evolve into this sad sad situation?

That's all I'll post. The first half of the day was great, so there is that to be grateful for. That and family and life. Okay, that's a little better.

A Little Bit of Pain and Anger

I am pretty much a mess today. I feel awful and tired. I am sitting on the floor trying to get some gas out- but it is so stubborn. My belly feels like there are tiny little mice with sharp teeth and claws running around in there. The docs said GasX, it doesn't really help. I read online that there is the kind of gas that you burp and the kind that is lower and that controlling the lower kind is difficult. No kidding. Oh, and the website (for a cancer hospital, I can't remember which one) also mentioned that it can be painful. Double no kidding.

This is not to say that I am online doing research about cancer- just chemo related gas. I did catch something about stages of colorectal cancer and that sent me into a small head spin. That is when I got out some fennel seed and started chewing, hoping against hope that it would work on the lower kind of gas. Because I want the gas to go away, I don't want to keep taking pain killers.

I haven't really been able to eat either. I was just going to say that I am not nauseous, but I am not sure that's true. Everything smells a little off and thinking about eating just makes me think "ewwww."

I haven't even mentioned how angry I am today. I am pretty mad. It seemed like my life was going pretty well, and bam! Now I can barely take care of Bennett. Monday is my day with her now that she is in school Tuesday, Wednesday and Thursday. And we had to call Aunt Liz to come get her, I just couldn't manage. That pisses me off. And you know what? it's not the cancer, it's the chemo. It feels really wrong to be mad at the chemo, when that is what is saving my life. You'd think I'd be normal and be mad at the cancer. Well, until a few short months ago, we seemed to be getting along just fine.

How twisted is this? It is how I feel though. I have at least four more chemo rounds to go - that's just until the next scan. My plan is for the docs to be so shocked that they 1) see only spontaneous remission, 2) order surgery to take out the little bits that remain. Let's all pray for #1, with #2 a good fall back.

That was my imperfect day. I can't even pep talk myself into feeling any better. I think it's time to do a little gratitude check with God. I'll keep you posted.