woe is me

I've been feeling a little bit sorry for myself today. I'm tired, so its hard to fight the pity party. And I'm not just regular, didn't-get-enough-sleep tired. I'm tired-in-my-bones tired. Can't-keep-my-eyes-open tired. And I've found myself in a complaining mood. (The only reason I'm writing instead of sleeping right now is because the kids are in the bath and I'll be needed to help get them to bed when its done.)

As a result of my lowered immunity my body can't fight off some regular things ... like acne and cold sores and a lingering cold. Therefore, I'm fighting the worst breakout since high school, and a cold sore. My whole face hurts.

Daily I draw nearer to the day I will actually choose to shave my head ... because my hair has become too thin to pretend anymore. I am dreading this day, and it weighs heavy on me.

Some chemo patients, when they're tired, they get to take long uninterrupted naps. When I'm tired, I doze on the couch in five to ten-minute increments, between requests for snacks, preschoolers fighting over a toy, the baby crying, and/or the dog barking because the mail carrier had the audacity to, once again, drop off our mail. (Seriously, she has to bark every time??)

Chemo drugs attack rapidly growing cells, like the ones that coat your mouth and tongue and throat. This has made my mouth sore, and most food tastes funny. The nice side of this is that I've lost the four pounds I gained eating comfort food after I found out I had cancer. But, I still miss the real taste of food.

Some chemo patients, when they need extra time alone, just go to Starbucks, or take a drive, or go to a movie. I end up staying up past midnight, just because its the only time everyone else in the house is quiet and leaving me alone. But I'm still up with the baby, these days by 6:30 in the a.m. Thus ... extra tired.

Oh, AND its Christmas. Family and presents and traditions and trees and decorations and parties .... and skipped naps and too many cookies and too much activity and I-just-can't-bear-it-anymore anticipation. And as Mom, most of the holiday duties rest on me. Its a wonderful, yet an exhausting time of year, even when you're NOT also going through chemo.

I've had a headache since Saturday.

The kitchen is never clean and I'm way behind on laundry. The floors need cleaning and there are toys EVERYWHERE. I find it hard to relax in such an environment.

I'm afraid today I have no positive twist on my current state of sullenhood. I'm just too tired. I can at least take heart in the fact that ALL of this is temporary (well, when I'm done with chemo I'll still have the three kids and the dogs, and therefore I'll probably still be tired ... but that's a tired I'm used to). My taste buds will be restored, my face will clear up, my headache will go away, I won't be so exhausted. My hair will grow back. But, at the moment, I'm finding it hard to hold on to the future when it feels so stinking far away from right now.

I think its time for ice cream.

chemotherapy

Well, chemo has begun! I sat in a chair for 3 1/2 hours on Wednesday morning and received my first of six chemo infusions. (Not a great picture, but there it is.) Once again, though surgery eradicated all traces of cancer, chemo is the insurance policy against any rogue cells that may have escaped undetected. It also helps lessen the likelihood of recurrence, particularly with my kind of aggressive cancer.

So far I'm feeling OK. Its been almost 48 hours since I finished the first round. I'm feeling a little headachy, tired, and food tastes funny. But otherwise, no serious complaints. I'm expecting to get more and more tired over the next few days, and any other side effects that I'm going to be prone to will show up soon too. So, we wait and see! And while I'm still feeling remotely well, I'm trying to get a few things done without overexerting myself ... a tricky task with three little girls to care for, Christmas presents to wrap and a birthday girl to celebrate in a week!

Interested in the details of chemo? Keep reading!

When I arrive for my treatments, they put a somewhat large needle into my port, implanted a week ago near my collar bone. This administers the drugs more directly into my system, almost directly into my heart, making them work faster, as well as save my surface veins from over use. They start with about a half hour of preemptive drugs. These include two forms of anti-nausea medicine, a stomach calmer like Pepcid, and Benadryl, for any potential allergic reactions. I had no reactions to the chemo drugs, but I will still get these with each treatment. There IS a cumulative effect to the chemo, and each infusion will be a little tougher. 

The first of my chemo drugs is called Taxotere. The dose takes about an hour to administer. Common side effects include temporary decrease in blood counts, allergic reactions, fluid retention, hair loss, fatigue, odd sensations, excessive tearing, rash, nail changes, muscle and joint aches.

The second chemo drug I get is called Cytoxan. (For you Fringe fans out there, I keep wanting to call this one Cortexifan.) This one only takes about half an hour to administer. Common side effects include bladder irritation, hair loss, nausea and vomiting, temporary decrease in blood counts.

So far, I have not experienced any horrible side effects. And the only one I'm fairly sure of, unless I fall into the three percent of people who DON'T lose their hair on these drugs, I'm expecting to be bald by New Year's Day. I'm prepared. I think I would feel like I was cheating if I didn't lose my hair.

Its hard for me, with so much to do in my house, to sit and rest. I'm trying not to overdo it while I feel OK, knowing I need to let my body heal and not overuse it. But its hard. If you're the praying sort, pray for our little family as we head into a week of mama being out of commission. Thanks!

there's more to life than cancer

the many phases of cancer treatment and "why chemo"?

I'm a categorizer, an organizer, a planner, a filer. So naturally I've been breaking down my cancer experience into phases. I'm not sure yet just how many phases will finally be involved, but its helping me take things one step at a time.

Phase 1: Diagnosis. This included the MRI, mammogram, ultra sound, biopsy and related doctor visits. This phase lasted exactly 2 weeks.

Phase 2: Decisions and Waiting. This phase lasted one day short of four weeks. It included making a decision about my treatment, with the help of many experts, friends and family, in light of my diagnosis, and then waiting for that treatment to begin.

Phase 3: Mastectomy surgery and recovery. This phase is still ongoing, as I won't consider myself fully recovered from surgery until I can easily pick up and carry my own baby.

Phase 4: Chemotherapy.

Many of you have asked, "Since the surgery got rid of all traces of cancer, why are you still doing chemotherapy?" Its a good and valid question, and one I sometimes still ask myself. Because technically, I would probably be fine without it. Its just that "probably" isn't good enough for my peace of mind.

Chemo is responsible for two things: First, it takes care of any cancer cell that may have slipped out of the tumor, through a lymph node and into some other part of my body without anyone's knowledge. My doctor calls these cells "cells behaving badly." Chemo is an insurance policy, if you will, against the "what if" of cancer spreading.

Second, chemo is responsible for reducing the future risk of my cancer returning.

For these two reasons, I head willingly into phase four of my cancer treatment. This Thursday (December 5) I head to the hospital for a minor procedure to implant a "port" under my collar bone. For each chemo treatment, the doctor will use this port to administer the medicines. I'll have the port for the duration of my chemo treatment.

Though I don't know exactly what day yet, actual chemo begins next week. I'm hoping for Tuesday or Wednesday. I will go in for treatment every 3 weeks, for a total of six rounds. This means I won't be done until some time in mid-April. Because of the aggressive nature of my cancer, I get to go a couple rounds more than the average breast cancer patient. This is the longest of the cancer treatment phases.

There's absolutely no way to know how I'll react to the chemo. The average person feels fairly sick for about a week, starts feeling better for a week, then feels pretty good for a week ... then goes in for another treatment. I will lose my hair, a fact I'm still having a hard time accepting. There are other side effects, including super dry and sensitive skin. I am not looking forward to it, but because I'm a big girl, I'm doing what I have to do. I am making sure that when I look back on this experience, I know I have done everything I possibly could have to eradicate cancer from my body and to live happily ever after with my husband and kids.

On to Phase 4!

God saved my life

You know how sometimes truths hit you more deeply one day than they did the previous day? I've always known, believed, that God's hand is in my life. He guides me, protects me, teaches me, disciplines and blesses me. He is present and active in my life. I know this because the Bible tells me it is true, and I have experienced it in many ways throughout my life.

But the other night I was brought to a new level of understanding of just how present God is in my life. Breast cancer was trying to kill me, and I didn't know it. So God saved me. He literally saved my life. If things had gone at all differently this year, I would surely have waited too long to see a doctor about my suspicious lump. I'm not going to play out the "what if's", 'cause that doesn't do anyone any good. But I know me, and I would have waited too long, were I left on my own.

And so I know, without a shadow of a doubt, He saved my life.

And so I've started to think ... why? Why save me? Who am I? It's caused me to think more deeply about what God has called me to do in this life. I don't have a lot of answers right now ... at least none beyond "pursue God more fully, especially as a wife and mom." But it has caused me to begin seeking God in a new way. There is a realness to God's presence in my life that I have never known before. He really is here with me, concerned with me, loving me, blessing me.

Its weird, but my experience so far with breast cancer has shown me more about God's love and care for me than I have ever known. He really truly loves me. He calls me his own. I've always known this in my head, but this truth is making its way deeper into my heart. What a privilege and a blessing, to be a beloved child of God!

Happy Thanksgiving!

The other day I was thinking back on 2013, and I realized its been kind of a crappy year. Let's make a list:

* The first 3-4 months of this year, Josephine threw daily tantrums that would sometimes last 30 minutes. She chose to throw these gargantrums (gargantuan tantrums) in parking lots and grocery stores. It might not sound like much now, but at the time it consumed our household. She and I dissolved into tears on a regular basis.

* I spent the first five months of this year exhaustingly pregnant. Never have I been so sapped of energy, be it physical, mental or emotional.

* During my c-section to have Eowyn, my bladder was torn, and I had to have a catheter in for a whole week.

* About two weeks after having Wynnie, I had to have a root canal, followed by a crown. A painful, and very expensive, procedure.

* At the end of the summer, I stabbed my hand, requiring a trip to the emergency room and three stitches.

* Ten days after that I saw the doctor, who was concerned enough about the lump in my breast to send me to have it checked out.

* On October 11th I was diagnosed with breast cancer. I was given one week to make a decision about what to do about my diagnosis.

* On November 7th I had a bi-lateral mastectomy. Recovery is taking FOREVER. After three weeks I still can't pick up my baby comfortably, or reach any tall shelves.

* I will start chemotherapy in December, which will last anywhere from 3 to 4 1/2 months.

* Through all of this we've had finances to juggle, a bigger stress than a lot of people admit, I think.

* I have a nearly-3-year-old who still doesn't say anything intelligible, making daily interacting quite frustrating, for all of us. She makes some of the most routine daily tasks some of the most aggravating things I do all day.

* Wynnie, that sweet baby I gave birth to in May, is six months old and STILL wakes up several times a night. Neither Caleb nor I have slept more than a few hours together since she was born. We're really sleepy, all the time.

If I were a complaining person, I would say I have a right to complain a little about this year. I've even considered becoming superstitious about the number 13, this year being 2013 and all.

But I believe we have a choice about how we feel about our lives. There is always another side to this coin. And not only is tomorrow Thanksgiving, but I believe a spirit of gratefulness is the key to happiness, contentedness. Whatever one's circumstances, we can find things to be thankful for. So, here is the flip side to my previous list:

* Josephine is growing up. She has almost completely outgrown her crazy tantrums and is becoming a delightful little girl, more and more willing to talk through her frustrations.

* I am no longer pregnant! And though the catheter was a nuisance, my bladder is healed! And I gave birth to the sweetest little girl you'll ever meet. She even has a belly laugh! She might be up half the night, but she melts all frustration away with her easy smile.

* If I hadn't stabbed my hand, I may have caught this breast cancer too late. I've never been more grateful for stitches in my life. That was $150 well spent.

* I have not once regretted my decision for a double mastectomy. The cancer is gone. We're on the road to recovery.

* I still anticipate chemo with a little trepidation, but God has been so extremely good throughout my life, not to mention this crappy year, that I don't doubt he will continue to carry me through the tough times ahead.

* Our financial woes are not even woes. Through the generosity of others and a seemingly decent health insurance plan, we have so far been able to cover every expense the doctors have thrown our way. Praise God!

* My 3-year-old is starting to attempt language, and though there is still a lot of frustration in our communication, we're beginning to see some light in a previously dark place.

I go into Thanksgiving this year with a truly thankful heart, even in the midst of a very difficult year. I am thankful for a loving husband; healthy, boisterous, fun-loving kids; a truly generous community of friends and family, who've selflessly come along side us in our times of need. We have much to be thankful for.

"The Lord is at hand; do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus." Phil 4:5b-7

I am truly at peace. And it is a wonderful place to be. I highly recommend it. In the midst of your bad day, week, or year ... what are you thankful for?

the wisdom of Wendy

Everyone should be so lucky as to have a Wendy in their life. My Wendy ... her name is, well, Wendy. Wendy and I grew up together. Literally. We've known each other for as long as we can remember. We became best friends when were still little. We grew up at the same church, attended the same high school. watched countless hours of Anne of Green Gables and The Twilight Zone. We ate too many cookies, stayed out too late, and had general revelry and good times together. Our ways parted a bit after high school, as I stayed here and she moved to Berkeley. Then I moved to China and she moved to San Francisco. She finally moved back down here, but got a job in LA. Its amazing how far Los Angeles can be from La Habra. Then I got married and started having babies, and we lost touch for a while. However, in the last year and a half or so, we have made more of an effort to reach out to one another, and our friendship has begun to grow again. Though our friendship has had its ups and downs, I am so grateful for my Wendy. There's just no one like a lifelong friend.

A few days before my surgery, I had a chance to spend an afternoon with Wendy and her mom (a second mom to me growing up). It was lovely. We had chocolate chip cookies and ice cream shakes (comfort food, of course). And we sat and chatted the afternoon away. Did I mention it was lovely?

During the course of our conversation, I got to sharing with them some of my fears about the coming months, with surgery and chemo and trying to manage my household in the midst of it all. I told them I really hoped I would be the brave girl with cancer. The girl who doesn't mind her flat chest, her bald head, her Frankenstein-like appearance (please don't correct me about Frankenstein being the doctor, not the monster ... just work with me here). I want to be the girl who doesn't complain about losing key parts of her femininity, knowing it was necessary to save my life. I want to be the fun girl who wears Sydney Bristow wigs, gets matching head scarves for her kids, and stares down chemo like its nothing more than a hangnail.

But I'm afraid I'm going to be the scared girl who wants to hide in my room when my hair starts falling out. I'm afraid of being overcome by sadness as treatment goes on and on and on. I'm afraid I will ask too much of my husband, be too short with my kids. I'm afraid of being angry, of pushing people away.

And then Wendy said the wisest thing. She reminded me that I am allowed to be all of those girls. Some days I will feel brave and head to Target with red hair and a flat chest and not care one whit. Some days I will need extra time in my room to let my emotions have their way. All of that is still me. And all of that is OK. It really is. Cancer is a huge deal. And its going to bring out the best and worst in me. I suppose most of all, I want to be the girl who simply embraces each day, whatever it may bring. It has been so freeing, realizing, remembering, that I am who I am, and who I am is exactly who God has made me to be. And together, we can do this.

Really, you should get yourself a Wendy.

the drudgery of healing

In those first days after surgery, I didn't mind just sitting around. It hurt too much to move, and there were lots of people to help anyway. Besides, I spent most of those days sleeping. Turns out I can fall asleep just about anywhere when I'm still trying to rid my body of anesthesia and narcotic drugs.

But since then, as I've started to feel better, sitting around has become a bit boring. I'm well enough to move around, but not well enough to pick up my kids. I'm well enough to walk through Target for a while, but not well enough to carry my own purse. Its a tricky and annoying state of in-between. Its weird to be well enough to laugh and joke with someone ... and then watch them clean my house ... because I'm not well enough to push a vacuum or dust in hard-to-reach places (thank you Kathie!). Its hard to remind my husband that he can't take the dogs for a walk because I can't be left alone with my own baby. I don't like this in-between, this well-but-not-well state of being.

But I'm just not there yet. In fact, this week I'm dealing with a new complication somewhat common to surgery ... severe gas back up. Yep, I know you wanted to know that. But because all that anesthesia stops everything from doing its job for several hours, it can take several weeks to get everything moving and working properly again. And I am getting quite anxious for my small intestines to start moving! I'm experiencing rather extreme pain in my rib cage, all the way up to my shoulders. it makes breathing difficult, and last night I hardly slept at all due to the knife-like pain in my back. I know it sounds strange, but its just gas. And so far, no amount of gas-x seems to help. (I see the doc tomorrow, and hopefully he'll have a stronger remedy.)

Its drudgery. Its the trenches of healing. Besides the gas, I've decided I'm done with the drains, even though the doc says I'll have them maybe two more weeks. I'm longing for a real shower, and I am SO longing to pick up my own baby. Life is drudgerous. (Its a word I just made up.) I live in Drudgerdom. Day in, day out ... wait for my body to heal itself. Its boring, its sometimes painful, and its making me impatient.

I know in the long run these days will feel like they flew by. At least I hope so. But today ... today they're drudgery.

Today please claim with me Psalm 27:14 -

Wait for the Lord; Be strong and let your heart take courage; Yes, wait for the Lord.

the stats

Just a few statistics about my cancer. I find it interesting, so I thought you might too.

About 1 in 8 women living in America will be diagnosed with breast cancer in their life time (12%). [source] 

The average risk of a woman being diagnosed before age 40 is less than 1% (about 1 in 227). [source]

Approximately 15-20% of breast cancer diagnoses are Triple Negative, like mine. African American women are 3 times more likely to get TNBC than Caucasian or Hispanic women. [source]

Since I'm on a streak with small probabilities, I've decided to start playing the lottery.

cancer free

Its been a little more than a week since surgery. The nausea is finally gone, which is wonderful. I'd rather be attacked repeatedly by killer bees than be nauseated. For a week I was wrapped up in bandages like a mummy. Those came off on Wednesday, which was freeing. It was like being freed from a corset, tied too tight, day and night.

I still have two drains hanging off each side of my chest, draining healing fluids my body creates trying to fix the giant cavities created during surgery. I'll have the drains for a couple more weeks. They're a nuisance, but manageable.

Would you believe that silly tumor grew a whole centimeter in the month between diagnosis and surgery? It went from 2.4 centimeters at my initial diagnosis, to 3.5 centimeters at surgery ... a whole centimeter in one month! But the mastectomy took care of it. They also found trace amounts of cancer in one lymph node, but not enough to make anyone concerned that it went any further.

Bottom line: I am cancer free! That's the point of this whole thing, right? Get rid of cancer, and live. Live for a long, long time. And toward that end, so far we are succeeding. Aggressive as it may have been, its gone now. Nice try Cancer, but I win this round. I'm a little deformed, and rather sore, and recovery will take a while, but all of it is worth it, because I still win.