Desperately seeking "Normal"

Oh my God, I miss normal. I miss it with every fiber of my being. I ache for it.

I didn't realize how much until today. First, we had a "not normal" day, though one that has turned into normal ... today was chemo day. Little Warrior was supposed to begin a new chemo (doxorubicin) but it turns out that the echocardiogram showed that her heart isn't working the way it should. (It's having to work extra hard because the tumors are shoving everything up into her chest.)

So, because of that, we need to hold off on the doxorubicin, because it can cause problems on down the line. She'll see a cardiologist next week, then the cardio will meet with the oncologist and the surgeon and they'll determine whether the risk is worth it.

But that's not what made me realize how much I missed normal.

Back at home, I was looking for something in the hall closet. Rummaging there, I came across all of her cloth diapers.

The last time I looked at one of her cloth diapers was before this all began. Since she's on chemo, she has to use disposable diapers now, since we don't want excreted chemo going through our laundry, staying in her clothes, etc.

It's not like the cloth diapers are that big a deal to me. But just seeing them, it was like when you smell playdough and are instantly transported back to kindergarten. Except I was transported back to "normal." A place where I could do such wonderful things as go to the grocery store, or meet a friend for lunch with Little Warrior and Bo Peep in tow.

A place where I could look at Little Warrior and just see a cute little baby.

Not *this* kind of attention

Okay, I'll admit it. Prior to this, I loved attention. Loved getting up and doing sermons, no shyness in the pulpit or the center ring. Sure, it's positive attention, right? And the attention I got -- though brief -- when I had the emergency appendectomy, well that was nice, too. Coupla casseroles, a few get well cards, nice to be nurtured.

But the attention for this ... I hate it.

I mean, I guess the alternative ... getting no attention, no one wanting to lift our spirits, bringing over casseroles and prayers ... I'm sure it would be worse. The one thing I have *never* felt in all of this is "alone." I am incredibly blessed to have friends who keep remembering me, neighbor ladies who have been bringing over little presents to "lift my spirits" (how thoughtful is that???), family that jumps to help even without us asking ...

But I don't like this attention. I don't like being "the lady with the baby with cancer." I don't like trying to appear upbeat and positive when almost-strangers ask me how Little Warrior is doing. I don't like writing thank you notes for all the little niceties that have been done. (And I'm normally an oddball who *does* enjoy writing thank-you's.)

Yeah, I'm grateful. And when I think about it all, I know that it *does* help me, *does* lift my spirits.

And maybe that's the part I really hate. That I need the help. That I need the attention.

Damn that Don Williams

Haven't cried about getting the news that the tumors haven't shrunk. Too much to do, plus, I don't want the children to see me weeping all the time. So I say, I'll cry after they go to bed. But after they go to bed, I get busy doing things, and going to bed.

So, I take Little Warrior to get an echo today. Am driving back home, idly singing along with the "classic country" station (the last good country music, with some exceptions, was the 70's, in my opinion). Get to a line from a Don Williams' song:

"...I should be thankful, Lord, I know I should. But Lord I hope this day is good."

Blimey. Tears are rolling down my cheeks.

Damn you, Don Williams! (shakes fist at the sky)

Babies With Cancer Resources

Specifically ... there don't seem to be any. You've got your "Make a Wish" foundation and "Sunshine Kids" and such, but they all require the patient to be at least 3. Which I can understand, they want to help the kids who can appreciate it. But babies ... and the families of babies with cancer ... have some different and specific needs.

So ... if I had the money to start a foundation for babies with cancer, what would it do?

Off the top of my head: provide slings for babies in the hospital or getting chemo. When you've got an iv pole, slings are WONDERFUL. You can pop Baby in one, grab the pole, and you're off for a walk. Baby loves being close to Mom or Dad, parents love having Baby strapped to their chest, exercise is a good thing ...

What else? Mmm, provide those portable DVD players with a copy of Teletubbies or Baby Einstein. I call it Teletubby sedation.

Resources for the family ... some sort of family/couples counseling support -- how do you help your baby when he can't tell you what hurts?

OH, DEFINITELY ... resources for nursing mothers. First and foremost, information on breastfeeding a baby with cancer. I haven't been able to find ANYTHING. My doctors are good, but they don't have any information on this. All they tell me is "sure, go ahead and breastfeed." Breastpumps, for keeping up your supply during the 4+ days when Baby has surgery and you're not allowed to nurse.

Hmm. Will edit and add more as I think of them. Little Warrior is fussing. Hey, money for a baby nurse! Naaaaah.

Phooey on Statistics

Bummer.

Well, they were hoping that by now, the tumors would have shrunk by about 50%. These had shrunk, if at all, maybe 1 cm. On the good side, the character looks different. Perhaps the necrosis is happening from the inside out.

So, Little Warrior is now going to be on doxorubicin, as well as the Dactinomycin and Vincristine. 6 weeks from now, she goes in to surgery, no matter what.

The statistics, overall, for Wilms' look great -- 90+% survival.

However, here's the deal about statistics. The chance of getting Wilms? 1 in 10,000. Chance of getting bilateral Wilms? 5% of that number.

So, 90% survival ... means 1 in 10 won't survive.

1/10.
1/10,000

I won't keep going with the math.

Classify these "Good Times"

I wonder how we will look back on this time.

Right now, we are still in the honeymoon period, if you can call it that, of treatment. As far as we know, everything is going swimmingly, we're going to shrink these tumors down, have surgery, some post-op, and get on with life. Now, this may all change on Monday, which is when we have an appointment to meet with the doctor to go over the CT scan.

But right now, it's all hope. This morning, Little Warrior giggled and squealed, as her two older sisters played their new game, in which one jumps on Dad's back and one jumps on Dad's front and they hang there til they fall. (He lets his kids just romp all over him. He's like a piece of playground equipment.)

Right now, The Husband took the kids to go get bagels, Little Warrior is sitting on a blanket on the floor playing with toys, and I'm about to go dry my hair and get out of my bathrobe.

As Willie Nelson sang, "Classify these good times."

Tomorrow, early

Ugh. Gotta get up at 5:30, in order to make it to the hospital by 7:30 for Little Warrior to get a CT Scan at ... 1:00??? Grr.

This is her first scan since starting the chemo 6 weeks ago. pleaseohpleaseohplease -- "Wow, they are really shrinking!" I'll settle for "they're doing just as we expected." Anything else ... don't want to think about it.

Dis Not Plan Me Have In Mind, Floyd

http://www.comics.com/comics/pearls/archive/pearls-20060226.html

(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!

Bwahahahahaha.

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.

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."

/Rant

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.

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.

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.

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.

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.

Topic?

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.

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.

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, la, how life goes on."

Hard battles, hoping for an easy war

NOTHING is easy. She's still got the canula (thingie in the nose), still has the Foley catheter, still hooked up to all kinds of monitoring devices, ivs, etc. After she tolerated the pedialyte okay, we were given the go ahead to nurse. Now, she wouldn't take the pedialyte in a bottle because she's been exclusively breastfed. Sorry, I didn't train her to a bottle anticipating that she would get cancer!

"Nobody expects the Spanish Inquisition."

Anyway, with a syringe, we got it down her. At midnight, we were free to nurse. Well, nursing a baby with a canula in her nose just AIN'T gonna happen, or at least, not this baby. Took it out. Tried for an hour to nurse. Not gonna happen, not after the whole canula incident. Okay, so bundle up all the wires, hoses and tubes and get her back in bed.

This morning, we were able to nurse (again, each time we have to go through a 3 person ordeal of moving wires, hoses and tubes and HER) ... but she threw it up. Probably because that's what she does at least once a day, having nothing to do with the nursing per se.

Tried again later. Did fine, except we had to give her blood pressure medication, which meant she threw up again. Not an easy one for taking any medicine by mouth, even before all of this. Oh! And mixed in all of this, The Husband is trying to hold an oxygen mask close enough to her that she'll breathe some of it, but not so close that she fights like a wildcat to get it away. Hmmm. Back when we were in college, I don't think that that is quite the way he envisioned getting close to my bosom.

And we're going to start the chemotherapy today. Cross fingers and toes that it goes well. Ideally, they'd wait til she was somewhat back to normal ... but we can't. The tumors are shoving everything up into her chest, making it harder for her heart to work, which in turn affects her kidneys, which already have problems their ownselves since that's where the tumors are residing.

But you know, I can take every battle being a sunovabeech if it means that the overall war is "easy." Do the chemo, get the surgery, be cancer free.

Sounds good to me.

Tell me again how lucky I am

Okay, I understand the mission behind it, but I'm getting tired of people telling me how "lucky" I am. Yeah, yeah, yeah, I know ... I'm lucky to live in a country where I can get good healthcare. I'm lucky to have a good, close family. I'm lucky that it's Wilm's tumors and not some worse type.

But it's one thing to know this yourself and comment on it, and quite another for someone who is not going through this to lecture you on it. My dear daddy, bless his pointed head, actually said, "If you'd been born when I was, you'd have two dead babies right now." (My first child had emergency surgery for a blockage when he was an infant.)

It has been ONE WEEK since we found out that the happiest baby in the world has cancer in not one, but both kidneys. Yes, the cancer is curable, but guess what? That's only one part of the equation. Killing the cancer has to be balanced with saving the kidneys, saving the heart. I always thought it was a quip when people would say "the thing with chemo is, you hope it will kill your cancer before it kills you." Guess what. It ain't a joke. It is literally true.

Let ME decide how lucky I am, please. And unless you have had a child fight cancer ... do not tell me I'm "lucky."

Lizard Eater

p.s. If another person tells me "this is a good cancer to have," they're going to get ... well, they'll get a mean look. Aw heck, probably not. Okay, then, then ... THEY'LL GET A TOTAL POKER FACE!!! Ha. That'll teach 'em.

The Journey Changes

SCREEEEEEEEECH.

That was the sound, not unlike a record player needle scratching across an LP, of one life screeching to a halt, in order to violently change directions.

Last week, I took the baby in to the doctor. She'd been vomiting some yellow stuff, and one side of her abdomen was swollen and hard. I hoped it was gas/indigestion, worried that it might be a blockage of some kind.

The pedi immediately sent us to get an xray. 15 minutes later, in the car on the way home, she caught me on my cell. Instructed me to instantly turn around. And head for the ER at the children's hospital.

Well, it's a week later. After an ultrasound, echocardiograms, xrays, CT scans and slicing her open to do a biopsy, we know that Little Warrior has bilateral Wilm's tumors in both of her kidneys.

Amazing how fast your perspective changes. You become grateful for such crumbs: we're grateful that it's Wilm's; they have a good rate for cure. We're grateful that they both have "favorable" histologies. We're grateful that the lymph nodes biopsied were clear.

We're profoundly grateful for our friends and family who are enabling us to just concentrate on LW right now, while they take care of the older 3.

And we're learning that just because something is a cliche, just because you know about it, doesn't mean it won't happen to you. 5 levels of grief? Yup. Have been experiencing them all. Incredulity -- a baby with cancer??? That's the most ridiculous thing I ever heard of. Rage at the situation, at the tumors themselves. Especially once I learned that the reason she's never been as roly poly as my others were was because the tumors were gobbling up her nutrition. MY wonderful, homemade breastmilk was being consumed by these tumors? That's like a criminal breaking into your home, stealing your goods, beating up your sister, then eating the birthday cake you made for her birthday. WTF???

Right now, she's recovering from the surgery. Surgery that hasn't actually done anything in the cure, it only provided us with information. Next step is chemo -- hoping to start it either day after tomorrow or the day after that.

Do I sound calm? I guess I am, at the moment. First you cry. And in my case, then you cry more. Then more. Then more. Then more. And then, it's time for the journey to begin.

Journey to ministerial life. It just became much simpler.

Journey to life.