Thursday, November 16, 2006

CHCWM.

Cancer & Hematology Center of West Michigan. That's where I'll be spending a lot of time over the next 6-8 months. My dad's lymphoma has progressed to the point where he now needs chemotherapy.

Yesterday was his first treatment. The treatment consists of therapy "every 3-4 weeks." So you're thinking, once a month, that's not so bad. Once you get there, you find out how things will really be.

To start, he had a 9:45 appointment so he could get blood drawn before the procedure. That meant picking him up at 9 am, since he lives about 35 miles away from the treatment center. The treatment center is the only one of its kind in West Michigan. Since Grand Rapids is known for its "premiere" medical facilities in the Midwest, people come from all over to get chemo treatment here. That is obvious by the number of patients each time we have been there.

We arrive at 9:30 am, a little early, but you never know with the traffic or weather how long it will take. We register and go sit and wait. Ten o'clock comes and goes and we are still waiting. At 10:15, I went to the reception desk where the treatment is actually conducted and wondered what the holdup was. "Oh, you mean he hasn't had his blood drawn yet?" Of course not! Okay, I'll tell Matt (his treatment nurse) you're here."

At 10:40 I was about to go look for "Matt" when my dad finally got called for his labs. From the regular waiting area, we were sent to the treatment waiting area. It was now 10:45. I was getting steamed. I had my own appointment to go to and still expected to get to work by noon. The treatment waiting area was overfull, meaning no place to sit. My grumbling got a few responses from people about how you wait and wait--each time. Visions of things to come.

We finally decide to sit in treatment chairs (recliners) and wait, since there was no where else to sit. At 11:00, Matt finally stops by and indicates "as soon as I get a room, we'll get you started." A room? Yes, some people like to be in rooms so they can lay down, rather than out in the general area. At this point, I'm thinking, for God's sake, just get this thing started! My dad is getting concerned about being there all day and into the night, especially when told the procedure will take 5-6 hours.

I was very annoyed with everything by now. I have kept my cool about things up until now, but not only had we been sitting around waiting for things to happen for almost 2 hours, but we had questions to ask and not one person could take a minute to answer these questions! Everything is pretty much routine: before your first visit, you are given a schedule. There is no discussion as to preference of appointment time. Everyone follows a procedural schedule--the hidden agenda.

The treatment schedule goes like this: treatment one day, wait 2+ hours, and then treatment for 5-6 hours; come back the next day for a shot of Neulasta (for white blood cell count). The next two weeks, come in for blood test. The third week, labs, doctor visit, treatment, and the whole thing starts all over again. Not once were we informed of any of this other than the amount of time the treatment would take. And when I questioned them having him come so early in the day only to wait for over 2 hours to get started, I was given a blank stare.

While waiting, a guy from my office came in. His wife was in for treatment again (as she has been on and off for the past 7 years). I am surprised she is still alive with the aggressive form of breast cancer she has had, plus the recurrence of the disease after being in remission for only a couple of years. He was quite familiar with the place, my dad's oncology doctor, and his nurse, indicating both were the best available. He filled us in on the normal routine of treatment and what to expect, answering far more basic questions than anyone else had done.

Looking at the people there for treatment, I knew I shouldn't be complaining about my schedule, but it could have made the whole process much more tolerable for both of us by telling us these things up front. Were they thinking they might scare us off the treatment plan by telling us about the slowness of the procedure?

I have no idea how things will progress for my dad, but with any cancer, I suspect things will get worse before they get better. They sent him home with three prescriptions: a steroid drug (can't remember what that's for), something for nausea, and one other, and again I can't remember what it was for!

I haven't even totaled up the countless hours and appointments I have been taking him to over the past several months leading up to yesterday. I don't have much other help I can depend on, since my only dependable sibling has a medical crisis of her own with her daughter right now. My brother who lives right next door to my dad! can't be bothered with anything, and he doesn't want his wife, who is an LPN, to be bothered either. Its hard to even explain the absolute selfishness of these people, but it is the way it is. My other siblings? One of my sisters "doesn't have a reliable car," even though her husband is a mechanic. (Do ya think its an excuse??) My other sister has a "disease" (self-imposed, most likely in her head) so she is unable to leave her house or be a part of the world, which also is a convenient excuse. And my other brother has been suffering from depression for so many years, and never attends any family functions, that none of us even remember about him half the time. A nice bunch, wouldn't you say?

Everyone always says I need to make them step up and take some responsibility, but believe me, its more stressful just trying to reach any one of them--since they NEVER answer their phones and rarely return messages if you leave them. By the time they might return a call, the situation has passed and then all I get to hear is all their excuses.

Anyway, enough venting. It is what it is, and I can only hope for good weather all winter, no blizzards, no icy roads, etc. Not too much to ask, do you think??

3 comments:

Flo said...

It sounds like my family. There are 7 kids and only 2 or 3 are worth anything. One is a drug addict, one is a hypochondriac, one thinks he's god, and one passed away early. So I completely understand your situation and you have my sympathy.

I hope things go well for your dad. It's so hard when a parent is sick. It's hard when anyone is sick but parents are viewed differently by children.

And remember, patience is a virtue ;)

Shelley said...

I'm so sorry to hear this Vickie, I know what these places are like though, my best friend is an oncology nurse and I've visited there several times with the cancer race that we put on, be strong, I know you are though!!

sharon said...

Vickie that is so sad and frustrating. I'm very sorry that on top of your fathers illness you have to deal with an incompetant health care system. I think the thing that would irk me is knowing I don't have a choice. I mean it's not like you can say "if you don't provide better service I'm going someplace else." Working in a hospital myself I'm constantly hearing about efforts to provide better faster customer service. I guess the system has a LONG way to go.
Take a good book or some mags with you next time anyway so at least the time there won't seem like such a waste.
As far as your siblings - I can't imagine how they can sleep at night. I'm sure your father is very thankful for you. Sometimes fathers aren't the best at expressing their feelings. So try to remember even if he doesn't verbalize it I'm sure he appreciates your efforts.