Tuesday, July 29, 2008

Monday, July 28, 2008

On the Positive Side

The last post was all whining.

This one is to say that my husband is a wonderful man.

I couldn't get through this without him. If I were rich and feeling well, I would buy him an extravagant gift. I would spend the whole day trying to make him feel appreciated for all he does and has done to help me, and our family, through this. I would buy him every i-gadget that money could buy.

I love you, DH!!

Me:0, Chemo:2

So....have I mentioned how much I hate volunteering for torture chemo?

I mean HATE!....with a capital H.

My husband keeps having to listen to me enumerate the many reasons why I am not ever letting them do this to me again. I won't. I'll run off to Hawaii, or buy some kooky "natural" cure online, or surround myself with crystals and incense and chocolate....anything other than purposely letting someone poison my body and making me suffer for a week.

This past week was difficult, not just because I felt so awful, but because the seriousness of my body's reaction reminds me that I am dealing with a monster. There's a reason the treatment is so drastic.

I actually forget, sometimes, that I had cancer in me. It's not so much forgetting, as possessing a combination of denial, faith, and optimism.....although the line between faith and denial can be hard to discern.

In my mind, I don't really believe that I am going to have to deal with cancer again. I've tried to "get through" everything that has been thrown at me, looking forward to sometime in September when I will be "done" with treatment/cancer. Of course, I won't be done. I'll be monitored and tested and watched closely for at least a couple of years. I'll have to always be vigilant.

It brings up memories of a woman I knew many years ago who had to go through treatment three different times, for three different cancers--a mother of three children. I brought her meals and visited her, but I know that I probably had no concept of what she was dealing with, emotionally. She recovered and is hopefully doing well, having moved away some time ago. Still, I wonder how useful I was to a woman who has battled such a monster.

Anyway, the realization that I may never be "done" with cancer, in the way that I want to be, washed over me during the worst of my days this week.

It is frustrating to feel powerless; to know there is only so much control that I have over my body, what it does, how it responds to treatment and the permanent effects of the treatments I have had, surgical or otherwise.

It sucks.

I could use many four-letter words to elaborate, but I don't want to offend all of you gentle readers, who are probably as sick of hearing about chemo as I am of experiencing it

Tuesday, July 22, 2008

Day Before 2nd Chemo

I measure everything by my treatment dates now.

"Oh, that's the week before chemo. I'll be feeling fine let's make plans for that week."

"Oh, that's the week after chemo. I'll be feeling like crap and having to stay out of public places...no can do!"

"Oh, the first day of school is 5 days after my treatment. I might not be well enough to take the boys that first day."

I have all my dates circled on the calendar and am working the entire family's schedule around it. It's kind of a bummer. I'm just glad that after the first week of misery that I seem to rebound and start to feel normal. Let's hope that pattern continues.

Today I called up some friends of the boys, and their mom, and we hung out at the park and watched them run solidly for an hour, chasing each other, hiding from each other, and climbing the enormous oak trees. We came back to our house so that the boys could show the Wii to their friends and let them play with it.

I talked and visited with their mom, who is the sweetest.

It was a good time, and a great way to spend my last day before I go in for treatment tomorrow.

I'm hoping that I will do better this time around, now that I have more of a sense of what to expect. I have all my necessary meds and preparations all stocked up and ready to go. Maybe I can manage my symptoms better this time around.

Here's hoping.

Tuesday, July 15, 2008

My New Hairdo

When I took a shower today, 1/3 of my hair came out in my hands. I couldn't deny that it was all going to come out eventually. My sister-in-law came up and helped shave it off so that I wouldn't have handfuls of long hair constantly coming out.
Here's my new look.

I'm ready for Boot Camp, Master Sergeant, Sir!

Here's an unflattering photo of me with my gorgeous, size 2, sister-in-law.

She was so sweet to do this for me. She even brought me three beautiful scarves to cover my head...so as not to frighten the public. :-)

Me and my hair.

Parenting in the Bizzaro Universe

This morning I punished my son. He was angry, crying, and completely frustrated.

The punishment? I made him eat something he really wanted for breakfast.

Yes....giving him what he wanted made him furious.

It all started over a packet of Cinnamon Swirl Cream of Wheat. It was the last one in a house of two children; both who love Cinnamon Swirl Cream of Wheat. Let the conflict begin.

The Rationalist got to the box of cereal first, claiming the packet for himself. Intuitive Monkey proceeded to cry, wail, and bemoan the fact that he wanted it, and it wasn't fair for his brother to have it, and the world is a cruel, cold place that doesn't care about him...etc.

Their solution was that nobody should get the Cream of Wheat. The Rationalist, pressured by his brother's temper tantrum, was willing to forgo eating the cinnamon bowl of goodness. I appreciated his willingness to sacrifice, but was unwilling to let Monkey manipulate the situation. He has a bad habit of whining for what he wants, causing his brother to cave in and give him what he desires.

I declared their solution as unacceptable.

I was bumping up against the childhood version of "fairness" which is nothing more than a thinly veiled version of selfishness: You have something I don't, or can't, have...so that means you can't have it either. It's a principle based in miserly jealousy rather than being based in a desire to be equitable.

I took my stand and explained that someone has to eat the last packet. Instead of being angry that one of them doesn't have it, they should be willing to let the other person have something good.

Oh the howls that assailed my ears! This was too much for them to comprehend. The Rationalist admitted that he had teased Monkey about having the last packet. His guilt about his attitude when he snatched it out of the box was eating away at him.

"Just let Monkey have it!" he pleaded.

"No. You're right that you shouldn't have teased him about it. That was mean and you should apologize, but it isn't wrong for you to eat the last bowl of Cream of Wheat."

"But...but...that's not fair to him! I won't eat it! I won't! You can't make me!"

"You will eat it, or you won't have anything else for breakfast. If you feel bad about the way you treated your brother then I suggest that next time you should be kind in the way that you speak to him. Your punishment will be having to eat something, knowing you weren't very nice about having it."

He threw himself onto the couch and began to sob.....over Cream of Wheat guilt.

I made the Cream of Wheat; one Cinnamon Swirl for The Rationalist, one Maple and Brown Sugar for Monkey. They came to the table, The Rationalist wiping his tears away and swearing that he wouldn't eat it.

A minute later, Monkey leaned over and whispered to him,"It's OK to eat it, I don't want it now anyway."

Thud...thud...thud...that's the sound of me hitting my head against the wall.

Monday, July 14, 2008

Just for Laughs

This is the sign right outside my mother's house.

Apparently, all the children in her small town dress like elves.

The Beginning of Baldness?

My hair is starting to fall out.

It's a little early. Cytoxan, one of the chemo drugs I'm on, usually causes hair loss within 2-3 weeks. I'm a few days shy of the 2 week mark, but some of my hair is already committing hari kari by leaping from my scalp onto the deadly spikes of my brush, or the distant ground below. If I listen closely, I can hear their muffled screams as they plummet to their deaths,"Aaaiieee....!"

I have enough hair on my head for twenty people, so it's not noticeable at this point, but if the process begins to accelerate, I'm going to have to shave my head. I can't walk around spontaneously leaving clumps of hair in a trail behind me like a molting animal.

I may call my sister-in-law, a hair-dresser, and see if she wants to do the honor of shaving it for me. I'm not sure if that would be a good idea, or not. She can be emotional and I don't want her to freak out when it's done and my head is bare. I'll be doing enough freaking out for myself.

Thursday, July 10, 2008

She's Alive!

I'm feeling pretty good, now.

Definitely manageable.

The only problem is my White Blood Counts were too low--1.5. 4 is the low end of normal. They have given me shots over the last two days to try and force my body manufacture more cells. Having my counts so low puts me at a high risk of infection.

I've been washing my hands...A LOT.

Overall, I am recovering. I can do things around the house and I'm not having the pain that I experienced that first week after treatment. I get tired out and feel a little weak sometimes, but I am in so much better shape than I was before.

Thank You God!

Tuesday, July 08, 2008

Reluctantly Attained Insight

I wrote this on Tuesday, July 8th.

This is the first day that I have felt was manageable since Thursday. Chemo hit me hard and still reaches out to sock me every once in a while. It was way worse than I had anticipated. I spent most of the time bed-ridden and in pain from my body's reaction to the treatment.

I realized a few things.

Prolonged physical suffering can reduce the average person to despair. I have had pain in my life. I have had several surgeries before, other times of not feeling well, but none of it can compare to how I felt this past week.

There is a certain level of constant nagging pain that blocks out thoughts of anything else. You can't watch TV. You can't read a book. You can't play a game. You can't even carry on a conversation. All that rings through your head is the sound of your own discomfort, and the ticking of the clock as time slowly records your suffering.

I had never experienced that before.

It made me realize how out of touch I was with what real "suffering" was like. The visceral, raw potential for your body to make you miserable is unlimited. I laid in bed wondering how people with advanced cancer do this for years. I wanted to quit after this first treatment, and I'm not just saying that. It took all my strength to keep from calling my oncologist and swearing that I would never consent to this legal torture again.

I felt that badly.

I'm sure I will have more compassion for people dealing with chronic pain/illness in the future.

Sunday, July 06, 2008

Me: 0, Chemo: 1

Chemo is totally kicking my butt.

I wish I could say it was all in my head, but my achy bones, constant fatigue and the ever-present sensation that I might be sick at any moment counter that thought--that, and the fact that I have slept more than I thought humanly possible.

I'm having a hard time with it mentally. Localized pain and surgery, though drastic and no picnic, were much easier for me to deal with. Somehow the nagging flu-likeness seems worse to me than losing my breast. Trauma, emergencies, one-time events; I can deal with them pretty handily. Knowing I am going to have go through this another 3 times over the next three months somehow seems more depressing and overwhelming to me.

I just want to feel normal.

Time, please pass quickly.

Thursday, July 03, 2008

Chemo Update--Cycle 1

I went in for my chemo around 9:00 am yesterday and was finished by 12:45 pm. I didn't feel any differently immediately afterwards and even went to Wal-Mart with DH to pick up my anti-nausea meds. I had to pop a Compazine tablet towards dinnertime yesterday because I could definitely feel the nausea coming on. It helped with the nausea, but I didn't feel up to eating.

Today, I have some prescribed anti-emetics that I take for today and tomorrow. The second and third day after chemo are usually the worst as all the chemicals start working through your system.

I don't feel completely floored. I am definitely functional and the meds seem to help, but I do feel kind of shaky and a little out of it--not 100%, but about 85%. My face and chest are flushed pink, a side effect of the Taxotere, I think.

Otherwise, right now I am doing OK and hope I continue to weather everything with minimal downtime.

Tuesday, July 01, 2008

Chemo Day

Because of my unexpected trip to Illinois, I delayed my chemo for a few days. I was supposed to start on Monday, but changed it to tomorrow, July 2nd.

Honestly, I haven't had much time to think about it, or be consumed by nervous anticipation. I have been so busy with the trip, and caring for my mother, that it hasn't even entered my mind.

That's probably a good thing.

I started a course of oral steroids today, according to my oncologist's orders. I take them the day before, the day of, and the day after chemo, supposedly to help with nausea and chemo side effects. I have been told that most people react to chemo, not on the day of treatment, but 2-3 days later, so the 4th of July might be interesting. Hopefully, the steroids will help.

I'll blog sometime tomorrow about how everything went down.

My Family

The woman in blue is my mom. She threw herself under a horse, breaking a rib and her tibia, just so I would come up to visit her. That takes special determination. She's doing better and was excited to finally get me and my kids up there to see her and where she lives. She moved to Illinois about 2 years ago.

The guy in the gray tank top is my baby brother, only 19. He's getting ready to move out on his own to Chicago.

My older brother is in the navy T-shirt on the right, with his little girl in the front, and his two boys on either side of my mom. He's a school principal during the weekdays, but a giant kid in his off-time.

The boys stayed overnight with my boys--a cousin slumber party. We brought the Wii with us, which I think my brothers used more than the kids. There was some smack-down, testosterone-driven, competition going on up there, especially with the boxing game. Lots of trash talk...that's my family.

This is my younger brother, his wife, and their two kids--who are so cute that they should star in Welch's grape juice commercials. They moved up with my mom about two years ago, and have settled nicely into Midwestern life. We visited them a few times, letting the kids chase fireflies together. My boys would capture them and bring them to the girls who would giggle and shout at the glowing bugs.

This is my lovely sister-in-law, the wife of my older brother. She is very sweet, but was out of town for the last part of my trip. She has Huntington's and is just beginning to show slight symptoms. I was happy to see her, but heartbroken as we talked about the future. She is doing well, but knows her able-bodied, able-minded years are limited. We pray that her disease won't advance significantly for many years. She doesn't deserve this, nobody does. She has a pure heart, full of kindness.

Visiting everyone makes me wish they lived closer. It was great to spend time together. Hopefully, we can make it back some time without someone having to injure themselves. :-)

Mammoth Cave

During the second day of our trip to Illinois, we stopped in Kentucky at Mammoth Cave. We took a 2-hour/2-mile tour through the cave, and we had a great time. Our tour guide was a colorful former Vietnam Vet, former drill sergeant, native Kentuckian, who was related to one of the original owners of the cave when it was still privately owned. He possessed a great talent for spinning tales and engaging the crowd of 100 tourists. I didn't get a great picture, but here he is at the beginning of our tour.

As we approached the mouth of the cave, cool air rushed over us, banishing the humid stickiness that enveloped the rest of the park.

We descended 200 stairs into the cave and began the tour. Overall, it was relatively easy. There are some tight spaces, and several places where the trail narrows the crowd into a single file line. The trail was rough and dark, but doable with common sense.

The cave itself is enormous in certain parts. The Rotunda Room, one of the larger parts of the cave, could easily hold a baseball stadium. Several sections open up into cathedral-worthy heights. Other sections, such as Fat Man's Misery and Tall Man's Agony, are not for the claustrophobic. They are true to their names, but fun to traverse through.

The biggest disappointment lay in the fact that Mammoth Cave is, in general, not a growing cave. There are no stalactites, stalagmites, or bizarre mineral growths to see. Intuitive Monkey was discouraged because he had looked forward to finally seeing them, only to discover that there weren't any there. He got over it and still had fun careening through the rocky darkness, as did we all.

If we had had more time, it would have been fun to camp in the rest of the park. It was a luscious, wooded, green forest filled with hiking and bike trails. Maybe we'll make it back some day.

More pics, just because.

Monkey says he's not mad in this picture, just trying to look tough.

Road Trip Recap and Words of Advice

1. It is possible to travel 2300 miles round trip with a six-year-old and eight-year-old without killing either one of them, or yourself.

However, not screaming at them, or issuing idle threats, while they wrestle and throw pillows at each other as you're trying to drive through a pouring thunderstorm, pinned between two semi-trucks going 70 mph, is impossible.

"Don't make me pull over this car!"

"You will lose your Wii and TV privileges for a month if you don't cut it out!!"

"You will lose your Wii, TV privileges, and outside time for 2 months if you don't stop NOW!!!!"

You won't leave your room or see the light of day until school starts if this behavior doesn't STOP IMMEDIATELY!!!!!

"I will suck the oxygen out of the car, and not let you breathe another lungful of air if you don't CEASE AND DESIST THIS VERY MINUTE!!!!!!!!

These incidents were brief, but always seemed to come at the worst time.

2. OK. If you live in, or near Atlanta, we need to have a little talk.

Now, I know it probably isn't you personally, but I'm willing to bet your family and friends are terrible drivers. Not the don't-know-how-to-operate-a-vehicle kind of bad drivers, but the tail-gating-the-car-ahead-of-them-at-80-mph-while-swerving-through-three-lanes-of-traffic-without-signaling-and-talking-on-the-cell-phone, or smoking a joint like one mullet-headed SUV driver next to me, kind of bad drivers.

You know it's true, just admit it.

I have driven through many major metro areas, but Atlanta is the only one that make me white-knuckle my through it with visions of multiple-vehicle, fiery, car crashes.

3. Rest areas are your friend. Use them every chance you get and don't believe any child who says they don't need to--they're wrong.

4. Even kids get tired of McDonald's after a couple of days.

5. When staying in motel rooms, try not to let the 20/20 special you saw about bed bugs, and germy sheets play over and over in your head. You'll never sleep.

6. Add an hour and a half to any estimated time Mapquest gives you. Their travel times are only accurate for robotic machines that can fly over traffic jams, never need to refuel, eat, or use the bathroom. If you are a robotic machine, disregard this advice.

7. Drive defensively. Assume everyone else on the road is drunk, having a heart attack, off their meds, or driving with a six-year-old and eight-year-old throwing pillows at each other in the back seat. It's the only thing that explains the craziness you'll encounter on the road.