Saturday, August 06, 2005

My Bald Public Debut





Well, folks, there it is. There's one picture of me becoming bald, and one of me getting my first look at my wig, and one of me attempting to smile. I have a GI Jane stubble - ugh - right now, and we'll actually shave that off to make it smooth tonight, as I don't like being a velcro-ball and as the little stubble comes out it's itchy.

I have decided that I am either extremely brave (something I don't really believe - I've written on that subject before), extremely extroverted (we all know that's true) or simply insane. You might agree with my last statement when I tell you what I did today, by my own choice.

Today, my family and I went swimming. At a pool. Surrounded by lots of other people.

Should I point out to you that I have recently had a mastectomy, that I have scars from two other surgeries, and that I have a bald head? Should I also point out that my body bears the many imperfections of its thirty-five-and-eleven-twelfths years, including cellulite, a less-than-flat tummy, and the rest?

Now you will understand why I have given myself the title of "insane," and why you should not question the fact that I am insane. Yes, I did indeed choose a pool as part of my public debut as a bald woman.

But let me back up a little...

This morning, the mood as I got my head shaved was almost festive. Some of us had Starbucks coffees, some dear friends brought thoughtful presents to help the day, and I was surrounded in the presence of people I love, which is the best present of all. A group of us walked from our house to the salon, and met up with a couple others at the salon. I was nervous, but comforted by the fact that I knew I was doing the right thing.

At the salon, I decided that I did not want to watch the process in a mirror - that seems too much akin to removing a large band-aid very, very slowly. Instead, I chose to face my friends, Ryan, and Tessa as the deed was done, and so they had a full view of me but I could not see myself. Krista, my stylist, was an angel on earth, and she treated us like we were all valued clients, offering coffee to the gang; more importantly, she acted as a friend.

I was very attuned to Tessa's face throughout this process. Heather held her on her lap, and looked at the cancer books ("Sammy's Mommy Has Cancer" and "Mommy Has Cancer") that we've been using to explain things to her. Occassionally, Tessa's lip would tremble and her eyes would grow wide, and I would talk to her, saying things like "Doesn't Mommy look different with no hair? Will you help me choose hats to wear?" and other such nonsense. It seemed to help Tessa, though, and she never shed a tear.

At the end, when it was all done, people got a little quieter. I felt slightly sick to my stomach, but this time it had nothing to do with the chemo drugs. The moment of truth - how awful would I look? - had arrived, and I didn't want to face it. But I did. Krista turned my chair around, and, surrounded by caring people, I got my first glimpse of my new, bald self.

I hated it. I looked like a cancer patient, really and truly, for the first time. I didn't feel brave at all. I felt scared, and I started to cry. Who wouldn't? Anyone who wants to say, "It's only hair," or "It doesn't define you," or any other such things should simply try being bald. Yah, it's only hair, but it's my hair, and I looked normal with hair, and not having hair is a big deal. It will grow back, but in the meantime, people will stare and I do not look like "myself." That, friends, is the truth, and there is no getting around it.

However, that's not all there is to tell. The tears dried quickly enough, and I declared that I was more than ready to try on my wig. (Please, bring it to me. Now. Please. Please.) With the wig on, I could breathe a sigh of relief. It was really still me in the mirror...only with cuter hair than before! The room felt more festive again, and everyone congratulated me on my wig choice, telling me how attractive I was. I think if I'd chosen rhinocerous hair for a head-covering my loving gang would have still encouraged me, but it didn't matter, for the fearful moment passed and I felt human again.

I smiled at the woman in the chair next to me, who was probably NOT having the salon experience she'd planned for, and apologised for interrupting her morning of pampering. She told me that she was honored to bear witness to my morning, and that she thought I was brave and that she wished me well. I did not tell her that I'm not brave. I said thank you. Today, I felt pretty brave, all things considered, even if what I was doing was because I had to and not because of some inner reserve of strength.

Wig on, I hugged Krista, promising that I was her customer for life. (This, I am certain, is the truth, in a very literal way.) She refused payment, and gave me a card to share her thoughts and prayers with me. She is a special person, and I am grateful that she was willing to share in this part of the journey.

Wig on my head, hugs were given all around, and some friends departed, and others walked back to the house with us. When we got home, there was a note in the mailbox from the members of the PEPS group that I co-led with Amy. Each of them had signed a note, and they had included a gift certificate to Ummelina (mmmmmmmmmmm fabulous!). The timing was perfect, and I felt so grateful. Thank you.

My parents showed up after that, for we'd planned to spend the day together, and Lori & Michele joined us for breakfast. Breakfast was fun, non-hair-centered, and a reminder that life does, indeed, go on... real hair or otherwise. After breakfast, friends departed, and the family packed up to head to G.G.'s for a visit (and so Dad could help with her lawn). We had a lovely visit with G.G., had Tessa's first real tea-party (definitely subject matter for another post, but one of my loveliest mommy moments) went shopping together for Gavin's birthday presents, and then I became truly insane.

It was my idea, actually, to go to the pool at the club. Tessa loves the water, our family has always had fun in the water, and today was just a perfect day to splash in the sunshine. It makes perfect sense, except for the bald uniboober part, and I thought it sounded fun.

I left the wig in the car (what use is a wig at a pool?), put on my pink baseball cap, took a deep breath, and entered the changing area.

When Tessa and I came out of the changing area, heads did turn. Young girls looked at me with wide eyes, and a couple of the parents (this is a family place) looked at me with questions in their eyes. I wore my beautiful new swimsuit, fitted with a swim prosthesis, I kept my pink breast cancer awareness band on (hoping, honestly, that people would notice it and think "breast cancer" and not "skinhead") and I put sunblock on my stubbly head, and there I was. I felt naked. The scars under my arm have created odd lumpy areas; the swimsuit does not entirely hide the fact that I am missing one breast; and on the other breast there is a visible (not covered by the swimsuit) two inch scar from the portacath placement. Add this to my normal swimsuit anxiety, and you will wonder what I was thinking. I took off my cap, left it with my swimbag, and went into the pool, holding Tessa, and talking to Ryan.

Well, here's what I was thinking. My family, myself included, enjoys swimming, and the day was right for swimming. The oncologist approved me to go in public pools while my blood counts are still good. The day was sunny and hot, and the water felt refreshing. All this adds up to one important idea: I am not my cancer. I am not going to stop living while all this crap goes on in my life. Instead, I'm going to carve out room for pockets of joy (thanks for that great phrase and prayer, Shannon), and I'm going to seize that joy whereever I can find it. When Ryan threw Tessa in the air and she screamed with delight, I saw Ryan's eyes shine. When Tessa and I snuggled in a warm towel during a pool break, I saw my parents relax with relief. When I kissed my husband in the pool, our daughter between us, I knew that we were going to be okay. People can stare, but my daughter was laughing, my husband hugged me, my parents smiled, and the water felt good on my skin. It was a good day to swim.

Yes, I'm insane. But I'll take the insanity over the all too real world of cancer and its treatment. If it takes insanity to make it through this mess, then sign me up. I've decided to be insane.

Love to all,
Kristina

PS My husband is incredible. Ryan, I love you! Thank you for making me believe that really, it's not a big deal to you to have a bald wife, and that you find me lovely with or without hair. Your love and support is a precious gift, and I love you for it. Thank you.

Bald!

Well friends, the deed is done. Like many things in this journey, going bald wasn't as horrible as I thought it would be. I can do this.

Accompanying me today were my handsome husband, beautiful daughter, and incredible friends: Susan, Michele, Lori, Susie, Heather, Holly. My stylist, Krista, was sweet and kind, and her nervousness (she's never done this before either) was perfect... she was an important part of the day and I'm grateful that she handled it with grace and friendship. She has a customer for LIFE...I joked with her that she had better not move out of state because my flight bills would be too much to handle. :-)

I am bald. Actually, I have velcro-head, and later today Ryan will take a razor and shave it smooth. It turns out that I did have a couple of little bald spots at the back, so I wasn't being premature in shaving it after all. In any case, I am glad that it is done.

There was no doubt in my head that I wanted to walk out of the salon wearing the wig. I am not ready for hats and scarves. My first words when I saw my bald self were, "I have cancer" (this was accompanied by tears). You know this, I know this, but seeing my bald self was a real reminder of that. The wig makes me feel like I'm tricking cancer right now. It's itchy and I'm sure I'll go bald soon enough, but right now the wig makes me feel pretty, and I could stand to feel pretty.

Susan took lots of photos, and she will send them to me today, and I'll upload them.

I will also post more of my thoughts on the subject...what it felt like, what my reflections are...but I need to process the experience first. I feel emotionally exhausted. Today was an important step. I'm glad that I should never have to do it again.

With love,
Kristina

Sleeping Beauty



Here's a picture of Tessa, taken a couple of days ago. At nap time she has the choice to have "quiet time" and if she takes that option because she's not tired she usually chooses to sit in the rocking chair and read. I came in to check on her the other day, and this is what I found...it looks like she was tired after all! I kissed her and carried to her bed to that she could rest more comfortably...but the image of her curled in that chair brings a smile to my lips so I decided to share it today when I need a smile.

Kristina

Today's bald appointment

I did not sleep well. I had dreams that I was given drugs that, in combination, could be fatal, and in my dreams I was throwing up blood as I tried to empty my stomach of the medicines which were poisoning me. YUCK!

My restlessness was caused by my anxiety about losing my hair, I think. And wouldn't you know it, it has stopped falling out. I have no idea what is up with that, but I will shave it today anyway...I'm tired of worrying and obsessing about it. I'm tired of being afraid of it. I wish it would keep falling out today in order to affirm my decision and make me feel more confident about it, but I am not able to choose the way in which my hair behaves (and this is no change from the usual, I think!). So, I say "HA!" to cancer and I shave my head when I choose. Today, in an hour.

Some friends will meet me in an hour at the salon. I'm about to pack my bag - one wig, one baseball cap (pink), one bandana, one cute hat, and washable markers.

I am certain that, despite my thinking and preparedness, I am ill prepared for this.

If I am strong enough, later today we'll go to Coleman Pool with Tessa and my parents. I will be the one in a swimsuit with a built in breast, and with a bald head. You won't be able to miss me.

Kristina

Friday, August 05, 2005

Hair today, gone tomorrow

Well, friends, it has begun. Today in the shower instead of a few loose strands coming out (as happens every day of my life), ten strands at a time wound themselves into my fingers and down the drain. With every brushstroke, a few more. I have stopped playing with my hair or brushing it to slow this process....and I have changed my Tuesday appointment because it appears I won't make it that long. My new appointment is at 8:15 tomorrow morning.

I have a wig. I have hats. I have people who love me. I will be okay. Please wish me strength anyway!

With love,
Kristina

Updated 1:13: My head is messing with me. What I saw this morning was real, but it seems to have stopped. It's making me crazy! In any case, tomorrow at 8:15 is the appointment, and I am ready. This morning was enough of a reminder of what it's going to be like, and if that had continued then our plumbing bill would have been huge. Onward...

The Children's Museum - and independence

Today, Tessa & I are going to go to the Children's Museum at The Seattle Center with our friends Susie & Nina. I gave Caley the morning off - she deserves it, and I think that I'm up to chasing Tessa around for a morning without help. Tessa deserves that, too. I crave this type of independence. I miss the old me who cooked dinner every night, didn't think twice about running five errands in a row with a toddler, and still had energy left over. Today I am going to pretend to be that person...until 1pm, when Caley will show up to help. (God Bless Caley!)

Kristina

Thursday, August 04, 2005

Follow up on "the letter"

I nearly forgot. The other day, I received a letter in the mail from the interventional radiologist who placed my portacath. I'm paraphrasing here because I'm too lazy to go upstairs and get the letter to quote it 100% accurately, but it says something to the effect of "I am sorry to hear that your very reasonable expectations for care were not met. Your care did not meet my personal or professional standards, either, and I am sorry." It went on to say that the team has reviewed my letter as a starting ground for re-evaluating the patient relationship, and insuring that no other patients ever experience something like this again. In other words, REAL action is being taken as a result of my letter, and I'm very pleased.

Kristina

Today *I* get to help out

Today, I am genuinely looking forward to helping out my friend Molly. Molly is a wonderful, warm, caring, incredible woman and friend, and Molly has been there for me 100% both before and after my diagnosis. Molly has everything "together" and I have never been able to really offer her help with anything, but today I get to be the friend to help. Molly & family have just moved, and there is the usual chaos of moving - the boxes and furniture in the house, but it's not "together" and life is chaotic. This morning I will go and help her to settle into her new house, and it feels SO good to help a friend and to be more of the normal me in doing so. (Don't worry, friends, no heavy lifting etc for me!)

My headache is perpetual, with ebbs and flows. I'll call the doctor again today. It's most likely a side of the anti-nausea drugs, so I'm not sure what to do...I would take a headache over throwing up any day of the week, but I'm not in love with the headache.

I think that Ryan is feeling better. He has received some personal stories from others with his affliction, and they give him strength. You know who you are - THANK YOU for sharing. Thank you, thank you, thank you. I believe that Ryan has turned a corner, and that things will be brighter from here out. Of course it will be a long road, but I am filled with hope again.

My love to all,
Kristina

Wednesday, August 03, 2005

Wigs, headaches

Today I bought TWO wigs. One is an "everyday" one - when I'm a "preschool mom" I'll wear it, and when I've decided not to shock the grocery store clerk, etc. It's cute, above the shoulders, and I like it. The other is my "sexy" wig - loads and loads of pretty long hair, more the way I'd wear my hair if it grew in thick and luscious, not at all "practical" and perfect for going on dates with Ryan or girls' nights where I want to feel pretty. I'm satisfied with my choices. I have one now (the other is on order in the right color - "ginger brown" - and will be in on Tuesday) and modeled it for Tessa & Caley. Tessa looked quite startled at first, but I let her try it on and she smiled and laughed and liked it. I hope this is a good transition for her....I couldn't bear to have my baby cry when she saw me post-shaving.

Unrelated to the wig...my headaches just don't go away. I got a headache with the chemo drip on Wednesday, and it hasn't gone away. It ebbs and flows, but it never disappears. Today it is like a vice grip on my head - it's hard to think, the sunlight hurts, and Tessa's "excited voice" about sends me over the edge. I called the doctor,and she prescribed 4x the usual Motrin dosage, with a note to call her tomorrow if it doesn't work. I pray that it does because I want to curl up in a dark hole right now, and that's no way to live.

Love,
Kristina

Tuesday, August 02, 2005

Fatigue

Well, I am learning that fatigue is real, and problematic. This is beyond "gee I feel tired" or "I could really use a nap." This kind of fatigue makes me feel snappy and grouchy, and my patience with poor Tessa is wearing thin. Today she was in a a particularly demanding mood and, bless her little heart, I wanted to send her to the moon for a few hours' vacation. Thank God for Caley!

Last night Ryan and I went out with Steve & Kerri. We had long, heart-to-heart talks in which Steve & Kerri shared issues very private to their hearts, and opened up their truest, deepest selves to us. We are both eternally grateful, and the meeting was healing for Ryan and I. In particular, I am hopeful that Ryan was touched by their stories, and that he finds strength in them.

Today Ryan was at home, and tomorrow he will return to work. He will take things one step at a time, and he will face the things he needs to face. I am proud of him.

Today I saw the surgeon, and she pronounced me to be healing beautifully. I do not need to see her again until after chemo, as a follow up. She wrote me two lovely prescriptions - one for a wig (I'm going shopping with Lori tomorrow...wish me luck) and one for massage. HURRAY for massage...I think I've earned it!!!

Today might be the day that my blood counts hit their "low." I sort of hope so - I've had a strong headache for a couple of days, and I really am tired, and I'm tired of trying to push on through with limited success. I hope that tomorrow I'll be on the mend again, and that I can have a good week before returning to the chemo trenches.

Love to all,
Kristina

Monday, August 01, 2005

(Sigh) Monday

Today Ryan is struggling. Thank you for including him in your thoughts and prayers. I will respect his privacy by leaving my note about him at this brief level, but know that his needs are utmost in my mind right now and that any extra strength you have should be sent his direction.

I had a restless night from, err, ummm, digestive issues. No nausea, but I'll leave it at that lest anyone feel ill from reading my reports! Today I am doing better and things seem to be working better in my system.

Before Ryan came home today, Tessa, Caley & I met up with Molly and picked up Tessa's new bed. Molly had read my note about thinking about a big-girl bed for Tessa, and since her daughter Ellie is moving into a double bed, she passed along Ellie's twin. My parents met us to do the heavy lifting, and later this week they'll bring the bed to our house to set it up. Tessa is VERY excited for her new, big-girl bed - it's a simple pine four-poster with a heart cut-out, and Tessa can't wait to sleep in it. These small joys bring great light to our hearts on days that seem otherwise dark and dreary in the face of all that we are enduring...our daughter is a beacon of joy to guide us through the darkness, and I adore her.

Many thanks today to Molly for the bed, and to Grammy & Grandpa for picking it up for us, and to Caley for being the glue that has held me together. Special thoughts today to my new friend Susan, who found out her course of treatment today.

With love,
Kristina

Sunday, July 31, 2005

Sunday - so far, so good!

Well, I woke up feeling pretty human, and I didn't even need to sleep past 9am to do so. Laundry is going, I've had some yogurt and Kashi and taken my meds, and Tessa and I are playing while Ryan takes a little rest (he's been up with us but deserves a little down-time, too).

When we all feel like it, we'll get ready to go to Alki Beach. We'll have a bite to eat at the bakery or cafe, then we'll go to the beach and let Tessa cavort and play. Then we'll go to the Farmer's Market and run an errand or two in the junction before we head home for Tessa's nap.

Now this is what a Sunday should be. :-) I hope that all of you are having similarly restful days!

Kristina