BJay is home sick with the worst stomach virus known to mankind.  He might be dying, actually.   So I’m taking life one moment at a time.  I’ve pre-packed the children’s lunches for tomorrow, assuming they are not sick by then.  It wasn’t so long ago a fun round of food poisoning had me doing laundry ’round the clock so I guess I’m used to it.  The funny thing to me is that this is exactly the one thing I didn’t think I could handle as a parent.  It has to be the worst part of having kids.  I honestly didn’t think I could take care of children when vomiting would be involved.  But suprisingly–it isn’t so bad when its your kids.  For some reason when its my husband I am so mean.  I grew up with a dad who would retreat to his room and we wouldn’t see or hear from him while he was sick.  I can only recall one time I actually knew my dad was sick.  So when I have a whiney man on the couch insisting the lights be dimmed and watching the most boring science crap ever–I am about out of my mind.  We have never established sickness ettiquette, apparantly.  The injustice of it all is that invariably, I will get sick when the kids are sick and BJay will go off to work because the reports have to go out.

Yeah, women aren’t allowed to be babies.

I’m nearing the ripe-old age of 32 and feel that I’m comfortably ensconced in my 30s. (I’m a fast learner.)  I’ve had nearly two years to reflect what this era is about and what I’ll let it be about.  My 30’s came in when I was 22 weeks pregnant, wearing a hospital gown and red socks…alone…waiting for some Doctors to dig around in my neck to decide if that mass really was cancer.  Every hard or unpleasant thing I have to do, I’d rather do alone.  And it wasn’t until I was 30 and 1/2 giving birth to my 4th child that being alone suddenly hurt me.  Don’t get me wrong, I’m never really alone.  I’m married, I have children, I have family…but if something unpleasant is going to unfold I want to face it by myself.  As if I could shelter everyone I love by shutting them out.  I went to almost every Dr. appointment alone before I found myself alone, laboring fruitlessly the morning of September 17, 2007.  I didn’t even realize I was alone until my mother-in-law called and asked if I wouldn’t like some company.  BJay was away getting the children settled or getting something to eat, I can’t remember.  And my mother was working that morning and I didn’t want to call her until I knew something was happening.  Up until the point where my mother-in-law said, “Its not right for you to be there by yourself.” I didn’t realize how much I needed someone to be there at that moment.  I hung up the phone and started sobbing uncontrollably…silently to myself.  My Dr. came in and I couldn’t stop crying.  I was so embarrassed, I just mumbled something about not getting enough sleep.  I hated this particular OB actually.  He had this gross habit of touching me on the arm when he spoke to me, as if it lent some kind of sensitivity to what he was saying.  “Its been a hard pregnancy.” He said while touching my leg.  “Cancer is scary, but you are going to be fine, you’ll see.”  I stopped crying, and felt this inward pang of something like nausea and disgust.  It wasn’t about the cancer, and besides (at that point) I wasn’t convinced it was cancer.  And if it was cancer, the last thing I wanted was that man’s sympathy.

After my surgery, I made BJay come with me to get the results of the pathology report.  It was cancer.  Not just one tumor but three.  Two papillary and one Follicular, which is a bit more serious but all curable.  The next step was more surgery to remove the rest of my thyroid.  I was there in this room with my surgeon and my husband and three of my children.  If there was an appropriate reaction to that news, I didn’t know what it was.  And if it was supposed to be shock or sadness or fear I wasn’t about to show my hand.  Not in front of the people I love most.  The surgeon left and sent in a counselor.  I told her I had researched this cancer carefully and I understood what it was and without saying anything, sent her away.  I wished I had been alone.  I felt the need to hold up this damn of uneasy cheerfulness between myself and my family so that they would never suspect anything was wrong.  “Are you okay?” I asked BJay on the way home, “Why wouldn’t I be?  Its going to be fine.”  he said, dismissively.  I waited until my family was asleep to give in to everything crushing down on me and I cried and vented to a friend via email.  Writing always has made me feel better.

This is how my 30’s came in.  My 30th birthday I was in the hospital getting a fine needle biopsy of my thyroid.  The day of my 10th wedding anniversary (30.5) BJay and I persuaded my little sister to babysit the children while we went for the second round of pathology results.  My heart had gone haywire in surgery, so after getting the news that the second part of my thyroid bed was also full of cancer, I got fitted with a heart monitor.  Sexy.

I get it.  I’m not going to be around forever.  I’ve got plenty of time left.  That is the beauty of getting cancer in your 30s.  You are young and resilient, and they got the cancer early enough that it hadn’t spread.  Lots of years left with the children.  But I’m going to die someday.  And if I’m ever going to do the great things I planned on when I was 17, I’d better get cracking.  And that, more than the cancer diagnosis–terrifies me.  On the one hand, I know the mark I’ve left on the world is wrapped in my four, beautiful, heartbreakingly hilarious, ingenious little children.  But they are their own little people, and I don’t know how much credit I can take for who they are.  On the other hand–Mediocrity.  What if I just blend in with the nothingness, nothing to signify who I was or what I did with my life?  I’m  just going to come out and say it.  I’ve always believed I was a writer.  Somehow that is deep-down how I identify the best part of me.  What if I never write anything that will define me that way?

Being in my 30s is wonderful.  I am getting to be who I am.  Sex is awesome.  I’m starting to drop some of the people and things that don’t help me move forward.  I’m starting to be honest with myself.  I’m not nearly there, yet but I’m progressing.  There is no sign of my cancer, but a lovely purple scar that lies above my collar-bone like a soft roped-jewel.

I know what  I have to do.

When I came home with Gabe from the dentist’s office this morning, BJay got up to get the camera.  Half way there he turned around and decided he didn’t want a reminder of what Gabe is like on drugs.  Gabe got his turn at the dentist this morning, they fixed his rotten front teeth.  It is a miracle and his  little smile is so much more adorable than it was before.  Gabe was a little too hard to wake up for my comfort.  I hate the idea of sedation.  It makes me uncomfortable, I spend extra time praying about it the night before… With Asher we just wouldn’t go there.  Aside from the expense, it just feels too dangerous.  It was NOT comforting when the dentist mentioned this case about a little girl who died from overdose of sedatives at the dentist.  I like that I get to be there for the entire procedure and actually watch my children breathing and wiggling around.  Gabe was so small strapped to that little board on the dentist’s chair.  When it was time for him to wake up and answer a question, he was so sleepy.  He was actually snoring.  It took a full 15 minutes of blowing air in his ears and tickling him before one of the hygenists went and got some toys from the prize box and had him pick.  Somehow he mustered the energy to nod his head yes and hold his hand out for a little blue ball.  I wasn’t really worried, but oh it felt like a small miracle to see him respond just then.  I enjoyed the time I got to hold him like a baby and he let me.  And we laughed when he said he was seeing two daddies over there.  And then he asked me where he got the ball he had in his hand since we left the dentist.  The drugs made him forget.  I made Gabe smile at me all day today.  At first to see when the novicane wore off, and then later to just see his pearly whites again.  I love my little boy.  I’m overwhelmed with love for him and I feel blessed that he got to have the dental work he needed without being traumatized by having to remember it happened.

I took Hila to the dentist this morning. She had a lot of cavities so the dentist had suggested sedation. I won’t go in to how bad my kid’s teeth are because it makes me feel like a failure as a mother. Her first appointment wasn’t going to be until February, but they had a cancellation so Hila got to go in this morning. First of all, let me just say, seeing your 5 year old on drugs is creepy. It is so weird how fast the drugs take hold. And then its bizarre how they disconnect your mind from your body. She couldn’t walk or talk and her head was wobbly like a newborn. If you didn’t know she was on drugs, you would probably have assumed that she had severe cerebral palsy or something. It made me think about how primitive we must be in medical science. We can unplug the brain but we can’t put it back together. If it is so easy to disconnect ourselves from our brains, why can’t we connect it back up in children who are born with brain damage? I’m on a tangent. Anyway, I got to go back with her since she was out of it and watch the whole procedure. She was only having 1 side of her mouth repaired today. Two crowns and 2 fillings. Yeah, I know, its horrible. Anyway the other thing that I was amazed at was how fast all those procedures happened. I’ve been to the dentist for a crown before and not only does it take more than one appointment, but each one probably lasts at least an hour. Hila was in and out of the dentist chair in about 20 minutes. (That included strapping her down to a restraint table and getting her to respond, verbally to a question afterward.) The whole appointment was 1 hour and most of that was spent in the waiting room. Why can’t the dentist be so fast when I need something done?
On the way home from the Dentist, Hila was still pretty out of it. She insisted she wanted to go back to school. She can’t even walk, but she wanted to be at school. And then she kept batting at imaginary strings in the car. She is home now watching TV with some milk. She asked me a while ago, “There are two of everyone on TV, do you see that?” Poor thing. She still can’t walk strait. They said she should be back to herself by lunch.

1. I have had a hard time trying to blog the past few weeks. I have been insanely busy, but who isn’t. And that never stopped me before. I love this time of year. I usually sink into a slight depression after Christmas because I hate that its over. This year I am not where I should be. Its more than just feeling rushed. Its more than getting older and having time move at lightening speed. I am preoccupied with what I hope will turn out to be a minor health concern. My salivary gland started swelling on my anniversary. Since then it seems to be swollen all the time. I don’t know if it is a lump or not, but there is a constant mass on my jaw just under my ear. I know it is fairly common to have salivary gland damage from RAI. But the thing that is nagging at me is the possibility of it being more cancer. I basically sailed through thyroid cancer without suffering much. It always felt too easy. Wouldn’t it be ironic if curing my thyroid cancer caused another more serious cancer? What if RAI is the cause and solution to all my problems? Which brings me to the other sad irony, Doctors aren’t my friends. It isn’t something I take personally, but when you need someone to just look at your weird lump there doesn’t seem to be anyone available. My Endo washed his hands of this because (he says) it has nothing to do with thyroid cancer. My primary care Dr., conveniently, is on vacation for 2 weeks. My nuclear medicine Dr. is willing to see me, but the earliest I can get in is Jan 29th. Waiting a month and a half does not put me at ease about the whole thing. Maybe, hopefully the swelling will go down by then… I just don’t know when I’m being melodramatic or just intuitive. Two of the 3 surgeries I’ve had in my life to remove some kind of lump have resulted in cancer. Those aren’t good odds, really. But then maybe that means I’m due for some good luck.

2. I really enjoyed going out to lunch today with the little ones and BJay. For some reason I just couldn’t stop hugging Gabe. Who knew it was so lovable and endearing to see a 3 year old eat a cheeseburger?

3. This is one of my favorite poems:
THE CINNAMON PEELER by Michael Ondaatje
(Author of the English Patient)

If I were a cinnamon peeler
I would ride your bed
and leave the yellow bark dust
on your pillow.

Your breasts and shoulders would reek
you could never walk through markets
without the profession of my fingers
floating over you. The blind would
stumble certain of whom they approached
though you might bathe
under rain gutters, monsoon.

Here on the upper thigh
at this smooth pasture
neighbor to your hair
or the crease
that cuts your back. This ankle.
You will be known among strangers
as the cinnamon peeler’s wife.

I could hardly glance at you
before marriage
never touch you
– your keen nosed mother, your rough brothers.
I buried my hands
in saffron, disguised them
over smoking tar,
helped the honey gatherers…

When we swam once
I touched you in water
and our bodies remained free,
you could hold me and be blind of smell.
You climbed the bank and said

this is how you touch other women
the grasscutter’s wife, the lime burner’s daughter.
And you searched your arms
for the missing perfume.

and knew

what good is it
to be the lime burner’s daughter
left with no trace
as if not spoken to in an act of love
as if wounded without the pleasure of scar.

You touched
your belly to my hands
in the dry air and said
I am the cinnamon
peeler’s wife. Smell me.

Before I was married, the poem was about ownership and possession. I was naive. Now that I’ve been married forever I see it differently. The beauty is not the mark of scent, it is in becoming marked by the scent. In a true partnership, you gain something positive from loving and being loved. You accept all kind of beautiful gifts that change you, enhance you, make you better and stronger. (And you hope that you are returning the favor.) Jealousy looses its grip. A few years ago I met the woman my husband loved his whole childhood and adolescence. He fully expected to marry her after his mission. I wanted to meet her. I don’t think I had any expectations how I would feel or how I would measure myself against her. I was surprised to find out how evolved I’ve become. Years ago when love was about possessing someone I may not have seen her as a person. But as an adult, I fully understood why he loved her. Why he has that place in his heart for her. And that didn’t diminish his love for me at all. What we are as husband and wife has evolved. I carry the scent of that love with me everywhere. When I approach a problem I think of his counsel. I try to anticipate his feelings. I still love this poem. I’ve grown to appreciate it even more. Is it me or are Indian writers just more poetic?

I had a follow-up appointment yesterday for my thyroid cancer. I had an ultrasound and there is no sign of cancer regrowth! I also had some blood drawn and a flu shot. So far everything is looking good. When we get the blood results back we’ll be able to compare them against my first draw. *Fingers crossed* we’ll have good news there too!

One of my favorite blogs had a topic recently that really made me think.  Cara Ellison’s Pink Rage post made me process my own feelings about the pinking of October.  First of all, let me say that I hope that the Susan G. Komen foundation really is close to coming up for a cure for breast cancer.  I deeply sympathize with people who are affected by breast cancer personally or by association.  I was very surprised to find that spending money on pink things in October doesn’t neccisarily mean that your money will go to fund breast cancer research.  Also I find it a little curious that a good number of people assume that the pink products they buy go to fund ALL cancer research.  In some cases, it might.  The Pampered Chef donates $1 for every pink product you buy in October toward The American Cancer Society.  But most likely, when you buy something pink after the first week in October NONE of your money ever makes it to the Komen Foundation because there are caps to corporate donations.  I won’t pretend to be an expert on how the money goes… I just know that there are a lot of cancer survivors who are annoyed at the way companies are making huge profits using cancer as a marketing scheme.  Does all this pink stuff everywhere make us more aware of breast cancer?  Possibly.  I mean it makes us aware that we should give money to someone in hope that someone else is really doing something about it.  There are probably better ways that our money can actually help people who are suffering with cancer though.  The Komen Foundation is about finding the cure (and I hope they do some day) they aren’t about helping families pay for treatments, groceries or childcare.  Those are things that immediately affect anyone with cancer. There are organizations who do that.  I didn’t really know that before reading Cara’s post and the comments that followed.  One comment that was very enlightening came from Mathew Zachary: (Who turns out to be a concert pianist, check out his site.)

“I encourage everyone to read this essay – “What Would Susan Do?” Link: http://imtooyoungforthis.org/media/costofliving/wwsd.pdf

Matthew Zachary
12-Year Young Adult Survivor
Founder, CEO
I’m Too Young For This! Cancer Foundation
http://stupidcancer.org”

Now I can feel better about NOT donating money to my kid’s school for breast cancer research.  And look in to organizations with a lot more transparency.  Unfortunately there are a lot of different cancers out there, some more deadly than others.  If you don’t know to check our breasts regularly by now you have to have been living under a rock.  People out there with goiters that are trying to convince themselves its not cancer–get it checked out!  I lived with a swollen thyroid for 10 years that turned out to be full of tumors.  Just because your Dr. does an initial exam and ultrasound does not mean you are home free for the rest of your life.  Stay on top of it!  Luckily thyroid cancer is one of the least deadly cancers to get, but its the one I know most about.  Most importantly, take care of your body.  Do all those things you know you should be doing.  Stop eating and drinking and smoking that stuff you shouldn’t.  Life is a precious, precious gift.

I got a note from my Endocrinologist with the results from my latest blood draw.  Double good news.

1.  My TSH was nice and supressed so as not to allow thyroid cells to grow.

2.  My thyroglobulin level (first taken so its the marker) was at .3, also very low.

So for the time being I can say I’m cancer free.  As long as my Tg stays low to undetectable that means I don’t have thyroid tissue growing in my body and therefore no cancer recurrance.  Yay for good numbers!  I will have regular blood draws from here on, an ultrasound in October and possibly a whole body scan at the year mark.  So far everything is working out perfectly.

I should be counting my blessings.  I have four of the cutest, sweetest children in the universe, a roof over my head, food to eat–and for the time being I’m cancer free.  My post-therapy scan was clean, huge blessing.  Even more of a blessing was that I had almost no side-effects from my RAI.  Nothin.  I’m not losing my hair, my salivary glands aren’t swollen and sore, I still have my sense of taste, I didn’t gain a bunch of weight… It was pretty much a walk in the park.  I did have some mild nausea in the first few days, but a couple days of nausea is nothing to cry about.  The one thing I’ve noticed though is that I am super annoyed about things.  Things that I should be able to let go.  Things that shouldn’t bother me.  I am experiencing a lot of anger that I don’t know how to deal with.  I find myself incapable of voicing my anger and annoyance with people.  Usually that works, I can just cool off, forget it.  I really hope this is a strange side-effect of RAI.  Maybe a consequence of fluctuating hormones.  Maybe my feelings are legitimate.  Its hard to tell.  I hope I’m not losing my mind.  I had always hoped that when I’m a mature older woman I’ll be able to say the things that I think about saying.  I just can’t give myself permission to say what I think.  Not even with this new perspective I have.  Not even as an older and wiser cancer survivor.  Hmmph.

Well I went to the hospital this morning all prepared and psyched to ingest my radioactive iodine. Today was the last day of my dosimetry study, which concluded in a very uncomfortable 40+ minute whole body scan. I did not anticipate how painful it was going to be to my lower back laying there for so long. I survived though. I talked with a very mild mannered Nuclear Radiation Safety Officer about my living situation and exposure risks to my family. Once the study was finished I noticed that there was a mad flurry to crunch the numbers and process all the data they collected. I settled in for a good long magazine read and my CNMT friend Josh told me to go get something light to eat and my Dr. would probably want to talk to me in about 30 minutes. I was just starting to resign myself to yet another boring salad when Josh came up and told me that the Dr. wants me to wait until Monday for my dose! Errrr. Best laid plans and all. Drs. have this luxury of doing whatever is most convenient for them. And I think they are secretly all sadists. So my very tight, planned out schedule is going to have to be rearranged. I called BJay completely annoyed and he was stoked. “Great!” He says, “Lets go camping!” Aside from lining up full-time child care for a different set of dates, this means that I’m stuck on my annoying low-iodine diet for another three days. I can’t tell you how tired I am of boiled chicken and rice and salad. I think I could hack it a lot easier if I was actually losing weight. Diets are much more encouraging when you are dropping some pounds. But the scale hasn’t budged. I guess I should be glad I’m not gaining. (I guess there is a tendency to gain weight in this process.) Plus I have to be off my meds another few days… and I’m going to be on the more-radioactive side when my dad’s family arrives for our quasi-family reunion on Wednesday. But, the Dr. thought it would be better if he had more time to review the data and set me up with just the right dose. I guess that is reasonable. It just really, really stinks that the end is pushed back another few days. The NRSO was saying that once I get my dose, he’ll take a reading with a Geiger-type device at 3 feet and 6 feet and then promptly escort me out of the hospital. (The Nuc Med department just happens to be located in the basement of the women’s hospital. Yikes!) Did you know that we get the equivalent of about 20 x-ray’s worth of radiation from the atmosphere? More if you do a lot of flying. The first two days I’m radioactive sitting next to me for 1 hour will expose you to the equivalent of 1 x-ray. After the first two days most of the radioactive material will have been excreted from my body by urine or sweat. But pretty much everything I touch will be radioactive until I wipe it down. So the risks are fairly low to my family but they still recommend limiting close contact with the children for 2 weeks. I knew that the NRC guidelines were pretty conservative, but I only planned for a week. Doing the dosimetry study will also tell us pretty precisely when I will be out of the danger zone. I’m going to have to just get used to all the motherly guilt I’m bound to experience soon.