use my experiences to help someone fight cancer

It seems that the first day or two after chemo seem to be good. The third and fourth are like a train wreck. No energy, dizziness, problems walking and more imporantly, problems with memory.

Perhaps the worst thing for me, the caregiver, is that I want to help, but I don’t know what to do. Beyond the obvious problems of the colostomy, not eating and making sure that pills are ingested, I just don’t know what to do.

Tomorrow is group at Gilda’s Club, and not a moment too soon!

Well, today was a very bad day. She’s not eating and doesn’t want to leave the house. I know that this is a temporary thing, but it’s just hard to listen to. She took a shower today, and became exhausted. I suggested a seat in the shower, and well, she got insulted. I thought that I’d be able to take her to the Jazz brunch tomorrow, but that’s just not going to happen. Massive blood tests on Monday, and then chemo on Wednesday.

There’s a jazz brunch on Sunday at Gilda’s club for cancer patients and their caregivers. This will be the first time my mom will be out in public, other than to get medical work done. I can’t express how happy she is that she’s doing something in spite of her diagnosis. While it’s only going to be 2 hours, it will at least give her a chance to see other patients and talk to people going through similar problems.

I took my mom for her blood count today. The results came back saying that her white blood cell count was very, very low. So here it goes: She can’t leave the house, not have contact with others and I have to take her temperature every hour until further notice. I’m sure it would have helped to have her get an injection, but when I asked, the infusion nurse told me to mind my own business!

to go back to group this week. It’s been a bumpy week for yours truly, the caregiver. On top of the colostomy problems that tend to arise after chemo, there’s the emotional rollercoaster. I got mom out of the house on Saturday, but she was so emotional, as she became very tired, very quickly. I keep thinking about the comment relating to the fact that cancer patients are manipulative, and I really think that’s wrong. It’s bothering me, and I have to resolve my anger with that statement.

The newest, but most worrisome thing is that she isn’t eating. Apparently, the chemicals used in the chemotherapy (carboplatin and taxol) alter the way the patient percieves how foods taste. This isn’t good for someone who needs to eat in order to maintain not only nutrition but strength. I’m just hoping that this is a temporary thing, and that she’ll be able to eat soon. Can’t live on ensure and ice cream.

Well, it’s been 8 days since chemo, and she’s getting weaker and weaker. I’m hoping that this is going to turn around soon. I haven’t slept more than a couple of hours a night for the past week. Someone said that this isn’t the worst of it yet, but I’m not sure that it can get much worse. I know that I can’t take care of anyone else, if I can’t first take care of myself, but sometimes it seems so hard to do.

I was able to take her mind off things for a little while. We discussed remodeling my house and what colors to use.

Ok, so today was my second group meeting at Gilda’s club. It seems that with some of the folks in the group, if you don’t practice “tough love” with your cancer person, then you’re being taken advantage of! I don’t think I’ll ever be able to own this one. Some people can’t be bullied into feeling better or having a positive attitude. I think that sometimes you just have to step back as a care giver and let the person express whatever emotion they need to. I don’t feel that I have to be a drill instructor for the anti-cancer shock troops, but instead be a gentle guide toward whatever needs to be said at the time.

I did volunteer to be part of a dragon boat crew as well as the team chiropractor. I’ve also asked to tutor the teens who’s parents are dealing with cancer. I guess I’m starting to feel the need to give back.

Since I don’t know anyone in my neighborhood (no, I’m not Mr. Rogers!), someone suggested that I get a lock box at the local hardware store. Then give the combination to the local police department, so that if they have to get in to help my mom, then they don’t have to break the door down. That is such a brilliant idea!

that I officially joined Gilda’s Club. A volunteer took an intake which tends to be a little clinical at times. No worries though, becuase the help that I’ve already found is fantastic! Tomorrow I’ll be going to my first friends and family meeting. Don’t know how many people are going to be there, but whatever. The idea is to talk to others with similar experiences, not be withdrawn!...grin.

Also, still waiting for another call from the doctor’s office to confirm what we already know. That there’s another blood transfusion on the horizon. Waited 45 minutes to do a STAT blood draw today, and who knows how long to fax the results over to the oncologist!