Sunday, February 26, 2006

Dis Not Plan Me Have In Mind, Floyd

(February 26 Pearls Before Swine)

Oh. My. God. I love this. I have looked at it about 50 times today, and it's still making me laugh.

God muss have beeg plan foh us, Floyd!


Wednesday, February 22, 2006

Keep your "miracle drug" of choice to yourself

Tip to the world: we all have a "miracle drug" that we believe in. But just because you believe in yours, do not try and convince me it is the One and Only Miracle Cure. Your cure may be:

* The Raw Food Diet
* Positive Thinking
* Jesus

... I'm not interested.

Prayers? Prayers, I love. Whether you pray to Allah, Jesus, Kali, of The Great Spirit of Mankind, I thank you for your prayers. I appreciate your prayers and I believe that there is a significant power in prayer that we don't understand.

But do not try and tell me to just hand my problems over to God and He will deliver. (I'm curious ... when people are given this platitude, and then the worst happens, do they then return to the platitude-giver and say, "Dude, what's up with what you promised?" Says my husband: "If they did, they'd just be given another platitude like 'Well, God has a plan.'")

And in terms of the "drink juice" or "eat raw food" or "don't give her chemo, it's poison" people ... get a life. Other than one bite of home-cooked sweet potatoes at Thanksgiving, this baby has had nothing but breastmilk, straight from the source. And chemotherapy is the reason why so many children now survive childhood cancer.

Pray for me. But do not tell me how to pray.

Or eat.

Tuesday, February 21, 2006

Whine and Redemption

"A range of acting-out behavior such as tantrums, or acting-in behavior, like depression, should be expected from an ill child. Help them to develop ways to cope and express their feelings." (from a helpful website)

Guess what. That applies to the parents, too.

First ... allow me to simultaneously act out and express my feelings.

Waaaah, waaaah, waaaaah! she whines.

So, in addition to taking care of a baby with cancer, a baby who can't tell me what hurts, so I have to try and deduce it by reading about older children and their complaints when on this protocol, I have to also make sure that my three older children are all having their needs met, both physical, emotional and mental, making sure that each of them feels special and valued and heard, AND I need to make sure to encourage my partner to express his feelings, no mean feat, since he is the quiet type, AND I need to be sure and eat healthfully because I must keep myself healthy, AND since I'm breastfeeding and alcohol can interfere with chemo I can't even have a glass of wine in the evening AND I need to comfort others -- friends, relatives and acquaintances -- who are affected by this, AND I need to read up on all the recent research to make sure our protocol is the best, AND OH YEAH, I need to sterilize all the babies toys and run interference between her and her siblings who really want to touch her, hold her, let her put her fingers in their mouths AND I need to make the house a sterile clean environment for the patient AND don't forget, "try to keep life as normal as possible to limit the disruption this will cause to your family."


Okay. Breathe. Breathe. Breathe. Think of the blessings ...

...Of which there are many. I am so incredibly blessed in all of this in so many ways.

My parents, septagenarians both, closed up their house two states away, dragged their RV down here and there they are, my beck-and-call-parents, ready to drop everything and come over for appointments, entry into the hospital, even to pick up groceries.

Our wonderful siblings, the aunts and uncle to Little Warrior, who call, come down, make flyers, and play with their nephew and nieces.

An incredible little church and our covenant groups, who have made sure we never feel alone. Trips to the hospital, casseroles out the yin-yang, running a blood drive, prayers and hope.

We are blessed. We are blessed. We are blessed.

Monday, February 20, 2006

Being a UU and a Parent of a Cancer Patient

So, does it mean anything, being both a Unitarian Universalist and a parent of a cancer patient?

In some ways, no. You go through the same Kubler-Ross levels of grief. You deny, you rage, you cry, you bargain, you accept. You wish it could be YOU with the cancer, not your innocent little baby. (As if cancer is only handed out to those who have done bad.) You hold that baby close.

In some ways, yes. Forgive the wide generalizations here ... there are Christians, Muslims, Buddhists, etc. that all question and doubt in the same ways UU's do. As a UU, I consider it to be a responsibility to my religion that I question deity and philosophy. Perhaps this is a cushion, at times like this. When someone says to me, "You have to realize, this is all part of God's plan," I don't feel a need to rage at any type of "His eye is on the sparrow" deity, as perhaps one who has had total trust in God might. I can simply say, "Pbbblt."

And during the day, I can acknowledge the sense I have that such things are random. To my mind, when Job asks God why all the travails were visited upon him and God replies, "Because I'm God," I don't see it as any type of mystical answer. I think that it is a matter-of-fact answer to why bad things happen. They just do. "Because I'm God."

Just random. I believe that things are interconnected, but I believe that there are some things that happen randomly ... much like cancer itself. You have your healthy, working body, everything working in rhythm. But sometimes, things go screwy. Cells begin multiplying rapidly, out of rhythym, out of rhyme. Random.

But at night ...

But at night, as I curl my body around her sleeping form, looking at that sweet little face, tracing the incision that goes from one side of her to the other ... all I say is, Please.

Please, God.

Sunday, February 19, 2006

I am Mr. Toad

I am, a bit. Mr. Toad. I admit it.

You remember Mr. Toad, from Wind in the Willows. He'd get into a new craze -- for instance, when he got a motorcar -- and he had to get the outfit to match. Goggles, car suit, etc.

I've done that. When I was on the fencing team, I was so thrilled the Christmas my parents bought me my own jacket. Pregnant, I couldn't WAIT to get in maternity clothes. After the baby was born, there I was in my nursing tops. I'm a Unitarian Universalist and not only do I wear UU t-shirts and jewelry, I even designed a shirt. And when U.T. were the champions this year, you know I was wearing my burnt orange the next day.

But now ... there's just no uniform, no costume, no t-shirt that goes with this.

I feel like there is. I managed to leave everyone today and go to Target all by myself. I felt like I was wearing a big, heavy sandwich board: "Mother of a Baby with Cancer." No one else could see the board, of course.

But it weighed me down.

Thursday, February 16, 2006

Liquid diamonds

Big difference between a cancer patient and a cancer patient's mama? I LOVE chemo day. Little Warrior gets it weekly: every week, Vincristine, and every three weeks, Vincristine + Dactinomycin.

I love chemotherapy. It is liquid diamonds to me, going in and vanquishing the tumors, causing all those cells to POOF!

The long drive to the medical center, the hours of waiting ... WAIT when you get there, then WAIT in the infusion area, then WAIT to see the doctor, then WAIT for the chemo ... no problem. Fussy baby? Well, I'll just pop her in the sling strapped to my chest and we'll walk around and around and around the pediatric oncology area. Each step gets us closer to time for chemo and each drop of chemo gets us closer to her being well.

I love chemo day.

Wednesday, February 15, 2006

Okay, now THAT'S funny

Apparently the worship chair for our church was holding the March 5 Sunday open for me. Before All Of This began, I was scheduled to give a sermon.


It was to be a humor service.

Happy 1/2 Price Chocolate Day!

Hey, we'll take our celebrations where we may. The Husband hit Godiva for 1/2 price Valentine's chocolate. He called me, asking my opinion about his selection. "We still have some left from Christmas," I told him. "A small box is enough." "Yeah," said he, "it's not that long til Mother's Day."

Mother's Day!

It seems a million years from now. I have no idea what my world will be like by Mother's Day. By then, Little Warrior will probably have had her surgery, perhaps be in post-op chemo. What will our home be like, come Mother's Day?

Right now, things are just ... unsettled. I haven't yet settled in to having a "normal life" some time, yet always ready to drop everything and go back in the hospital. And then there's the weekly chemo treatments.

But Little Warrior seems so normal. She laughs, she plays. She hasn't lost her hair yet. She has good color. So, we somewhat go about our day, stopping occasionally to take blood pressure, or hook up her iv antibiotics, or take her captropril.

I've had the weird situation of having do "de-reassure" people. Yes, I'm making up a word. Here's the situation: word somehow got out that she had "turned a corner." Whatever that means. A neighbor stopped by yesterday to check on us. When I said something about going for chemo weekly, she stopped me. "But I thought everything was all over?" No, I told her, we're actually just at the start of the process.

The whole thing is just weird, weird, weird. I occasionally tell myself "don't be overdramatic." Then I have to remind myself, "you're not being overdramatic. Your baby has cancer. It's real. It's happening."

So, in summation, we are in a period of adjustment. Explaining to the children that when we're here, we're here, and the normal rule apply. Trying to stay kept up on laundry and bills. Figuring out work-arounds to things like the fact that I can't go to the grocery store anymore.

Tomorrow is "double chemo" day. Rah-rah.

Tuesday, February 07, 2006

Back in the saddle ... er, hospital ... again

Well, after 5 glorious days of being at home -- I didn't know they were glorious at the time, but now I know to cherish every single day home -- we had to come back to the hospital as Little Warrior got an infection. Because the chemo kills good white blood cells, as well as the bad cancer cells, if you get an infection, you're in the hospital for iv antibiotics and "keeping an eye on."

It's not too bad. She's on the iv, but no monitors, other than the normal every 4 hours vital check. A coupla times a day, I pop her in the sling, we unplug the iv pole and take it for a walk around the pediatric oncology floor. And around. And around. And around.

So, I guess this isn't going to be a cake walk. I guess cancer rarely is.

A couple of people have told me things like, "well, when this is all over, it will help you, when you become a minister." (This has always been said in a sensitive way, after profuse preambles of "you'd never want this ...")

I guess that could be true. I don't know. It seems miles and miles, years and years away. I'm just focused on the task at hand. And I'm not entirely sure that this will better me in any way. It quite possibly will make me bitter, not better.

And it all seems weird, anyway, the idea that this torture being done to my daughter would enhance me in any aspect. I mean, how self-serving is that?

Got a reminder, in the midst of all this, of how lucky we are. REALLY lucky, not "lucky to get one kind of cancer over another." We went to the ER Sunday night. They let us go home, about 2 in the morning. We were blocked when we came upon a huge car wreck on the freeway.

Just read the newspaper. Head-on collision, someone going the wrong direction. 3 fatalities. 15 minutes earlier, and chemo might have been moot. For all three of us.

Dayum lucky.

Saturday, February 04, 2006

Obladi, Life Goes On

"Obladi, oblada, life goes on, bra ..."

Even with cancer.

We are back home. Little Warrior had her second course of chemo last Thursday. She's throwing up about twice a day (and the doctors tell me that in babies, chemo doesn't cause nausea. Ha.) and her skin is a little dry, but so far, so good. Now that we're home, she has actually laughed at her siblings, done some smiling, and life is somewhat back to normal. I mean, other than the fact that we're taking her temp and blood pressure constantly, I'm wearing a watch that beeps at me every 8 hours for her blood pressure medication, the children aren't allowed to touch her, we're not allowed to go to the store or church ...

Well, other than THAT, Mrs. Lincoln ...

But life does go on. The 3 year old has a stomach bug, so we're trying to keep the two of them separate. But last night, we had a good dinner, all watched a DVD together, then karaoke in the living room.

Our living angels have been swirling around us, bringing us casseroles and Teletubbies DVDs, chocolate and company. It is amazing how important a card in the mail is -- it symbolizes a prayer, a moment in time where the person purchased it, signed it, addressed it and mailed it -- thinking of us while doing so, it's a tangible reminder of the energy being sent our way. I have never been that much of a card-sender; this has changed that.

We go to the children's hospital for chemo. There's an outpatient clinic with an entire floor devoted to pediatric oncology. You would think it would be depressing, a floor filled with children fighting cancer.

It's not! They've done such a terrific job. It's open and airy, and all about kids. There's toys, wagons, tvs, special lounges. They have a process you go through every time, so you used to what is going to happen. There's child life specialists on hand to help with distracting children or talking to siblings. Everywhere you go, there's someone saying, "what an adorable baby!" The vibe there is bright and happy.

", la, la, how life goes on."