Wocka, wocka

Let's be honest. I was not my most poised on Sunday night. Growing angst and naseua should have been obvious indicators that I needed my friend Xanax. But it had been a lovely day and I am trying to master my mind rather than numb it.

On Sunday evening, I overestimated my authority or underestimated my angst. I lost my mind over Jim's neglect (aka complete and total failure to understand who I am and my needs) to buy me a water bottle for my first day of treatment. I sortof promptly apologized to Jim and didn't even use "my sickest day" as an excuse.

Earlier Sunday was better. As you may know, I was raised in a no tv no junk food household. The cupboard was bare of processed foods way before it was cool. There was no salt added and rarely red meat. I was the worst playdate. All I wanted to do was watch tv when I went to a friend's house.

The indoctrination was mostly successful. We eat well. No red meat really. Few processed foods. Miles' diet is, according to him, tragically bereft of desserts and juices.

On the tv front, Miles is nearly as (pop) culturally illiterate as I was (am). He watches no tv (except Wizards and Caps games) and sees a carefully cultivated list of programs on demand, no commercials with strict parental editorial control.

I am not a true believer, however. I crave a bit of junk food and mindless tv. And Sunday morning, my Mom and Rick came over and helped us break a long-standing family rule. There is now a tv in my bedroom and it is awesome.

Dani watched the boys and Jim and I spent our afternoon in a neighborhood dive bar. Alone at first and then joined by friends. It was perfect.

Fast forwarding through an animated discussion about the importance of hydration and a water bottle, Sunday night, I medicated and went to bed. Ian slept through the night for the FIRST time without a feeding at 4.  Or as far as his medicated parents recall, he did.  Either way, I should disclose that he slept in his car seat next to our bed.

Now for Day 1 of my recovery.  Thank you for all the calls, emails and texts of support over the past few days.  It means so much to me to glance at my phone and find a joke (it was terrible and perfect), see a picture, find a note, receive beautiful flowers (merci beaucoup, franscoise). I draw strength from your support and confidence in me.

Today was easy and today was hard. There was no other place I wanted to be. But that didn't make it easy to be there. A friend drove Jim and I and helped us pass the time. It was hugely helpful. I am no authority, but think I can reasonably conclude that I am the first chemo patient whose snackpacks included chocolate truffles, cornicions and goat cheese. I love you helping me cover all of the angles.

I nibbled on the snacks and visualized the 80s. I welcomed the chemo in the form of ms pacman traveling my system and enthusiastically gobbling the cancer wocka, wocka. The chemo is my friend. The chemo is my friend. Eat up. Wocka, wocka. (Thank you, Sue).

Back on the ground here, I feel lousy and I think today is supposed to be a good day. Mom and Jim and the boys are here and they are a comfort to me. What more could I ask.

Highly Variable

A friend texted the day after Christmas to see how we were. "Highly variable" was the response.

 The wind is my least favorite weather condition. What comes to mind is the wind whipping away any warmth you manage to generate on a cold day. This is also describes my state of mind these days.

 I'm fine, motoring along through my day and then something - a card in the mail, a lyric, a tenderness, a pain in the breast - and I am hit by a buckle-your-knees stab of grief. Then, I steady myself, sometimes literally, set my jaw and move on.

 Christmas was lovely. Jim and I had Christmas covered for the boys. The Kowats made sure Jim and I had a Christmas to celebrate too.

 I've talked to Miles, twice. I had to go back and cover it again because he was totally unconcerned the first time. Actually, both times. He wanted to know where I was hurt. I showed him. That's all. I didn't say cancer. I didn't say much. But I said I'm sick and he heard it. I've just spent the summer at home resting with a new baby. I think he will be glad to see more of me and that might be it for now.

What else?

 Oh, that how to have cancer book. Here is my advice to those that come after me: throw out books in pastel colors with bouquets of flowers on the cover. A few minutes alone with this handy resource for women with cancer robbed me of a night's sleep.

 I met another survivor today. (You know who the other is right?). Our lives and circles overlap. She is two years ahead of me. She was diagnosed with a house full of babies.  I am deeply comforted by her experience. I think she is going to be a late-night-phone-a-friend.

And, finally, the wig consultation.  It wasn't nearly as awful as expected.  It actually might fall on the highlight list if I were to do a review of the day.  Now, that is some positively positive thinking.

 I do not know if anyone can ever be ready for chemo. But if one can, I am. I mean, there are dozens of things I'd still like to do first, but such is life.

Joyful

So reads our Christmas cards. The cards arrived a few days before the diagnosis and created a bitterness that is only starting to lessen.

 I am resting with the boys. Miles is sleeping soundly. Ian is chewing his toes and flirting with me from his car seat. I am filled with joy and deep sorrow.

 It is a good Christmas. Probably our happiest. The joy of a baby's first Christmas and the joy and wonder of a three year old. Two grown-ups quietly full of gratitude for each other and our families. I'm not sure it can be matched.

The house is full of family. It reminds me of my childhood with multi-generational holidays in tiny houses with too few beds and bathrooms. It is cozy and familiar.

 But Christmas also breaks my heart. I know so many people and dear friends who lost parents at a young age. And more difficult for me these days, moms to breast cancer. Here is my thought I shouldn't have: which is worse, Ian not knowing his mom or Miles losing his mom? That thought is my Christmas sorrow. How could it not be?

I am working to refuse this sorrow. To push it away. To reject it and clear the mind.

I can see I am squaring my shoulders and leaning into the next phase, recovery. I am not as tired. The round-the-clock Christmas music is back on. I can sing lullabies to the boys without my voice breaking. I can make eye contact with Jim. I didn't cry yesterday. Jim and I are pulling together. We are writing our Christmas cards.

December 29, 2013

It just occurred to me and I mentioned to Jim that it is possible that December 29 is the sickest I'll ever be.  It sounds like a technicality, but I don't think so.

Now, I feel great, but I am sick.  We've been agonizing over the chemo because it is scary and the side effects are endless and unpleasant.  But now I'm thinking, no, no, Kelly, the chemo is the first step to recovery.  Who cares about the side effects.  It is the recovery.  (I'm still working on some version of "it is the recovery, stupid.")

I'll spend my last few days of being so sick but feeling fine celebrating Christmas in Washington with Jim, Miles and Ian, and my family and Jim's family.  Then, on December 30, we'll begin the recovery.

Best foot forward, spit spot

We watch a fair amount of Mary Poppins ("Mary Puffins") in my house. In twenty five minute increments and usually the same twenty five minutes. Over and over again. I'm complaining, I know.

Today is a grab bag.

 First, thank you for the laughs last week. You get credit for some good ones. My friend's son who had lots of questions about Jesus. Most delightfully, who is she and is a manger the same thing as a hotel?

I also heard from my high school french teacher. A lovely, wise and supportive note with one small editorial note - "'f'ed' is not french." A stickler for precision, I love it!

Thursday we made the decision to proceed with treatment at Georgetown. We are in the capable hands of a fierce Canadian. And she likes hockey. That gets some mileage in my house. Particularly with Miles.

Earlier in the day, I took Ian to my Company holiday party as a baby shield. I had broken the news at work and needed to give myself and my coworkers a bit of a distraction. Ian was a trooper - sweating and smiling in his (toasty) santa suit. I was surprised and a bit saddened by the discomfort I noticed in people. I mean cancer sucks for me and my family, but it had never dawned on me that it would make people uncomfortable with me.

I'm not sure what to say about that. Roughly I'd approximate that it divides the world into two categories: those who have grieved and those who have not. It seems that the people capable of talking to me understood that nothing could be or needed to be said. For you fortunate others, know that words of comfort, distraction and obscenities are all appropriate openings. I would also be happy to discuss anything else. Dental procedures and laundry sound riveting these days.

Our Thursday was hard in the way that the lives of working parents are hard. Jim and I had work. Miles had a family cookie party at school. Miles needed to go to the doctor for a walk-in appointment. School, sick, childcare and work juggling.

The cancer stuff was the hard+. The oncology appointment lasted more than three hours. This was the details appointment. As a general rule, I process information fairly well, but I was completely overloaded. I told Jim, for the first time since the diagnosis I was ready to collapse from exhaustion. I just could hardly function. Getting home and into the house took more energy than I had.

I start chemo on December 30. I still haven't read my book on how to be a person with cancer. I've been told I'll feel 85% instead of 100%. We'll see and I'll keep you posted, but I'm cautiously optimistic. Before the diagnosis I hadn't slept through the night since Ian was born in July. I'm fairly certain I've operated at 85% before. Of course, I did have my hair and I know it sounds crazy, but I'm guessing it will be harder without it.

I've been advised by various wise folks that I need a kick in the butt in addition to all the hugs I've been getting. That I need to focus on the fight.

I'm trying (I love me some Star Wars, but no Yoda, please). I was never the fastest or smartest in the crowd. But I have some fortitude. I am confident in my strength. I am cultivating the fire in the belly, the fight, the battle mentality. Hence, the best foot forward, spit spot. I'm getting there. I will get there.

We'll talk about Jim in another blog but let me assure you he has ferocity in spades. People, do not cut him off in an intersection or pause too long at a stop sign in Mount Pleasant these days.  He has the fire in the belly.

Miles is sitting with me and just said "Santa is so silly because he laughs like this: ho, ho, ho." On that note, off to carry on while cultivating fire in belly and unparalleled and unchecked optimism.

Just the facts

Triple negative breast cancer. Clean CT scan. Clean bone scan. Now the work begins.

She was just a tough Jamaican

First things first.  Everyone asks how is Maggie?  How is your mom?

Mmm.  How to answer.  I think we could all agree that the only thing worse than cancer would be your child getting cancer.  That was my first thought - fine, take me but don't touch my boys.  So, I'd assume that she has had a pretty bad week.

Having said that, what's amazing about my mom is that I don't know the answer to how she is.  She comes over.  She keeps us company.  She helps with the boys.  She cooks.  She plays.  She chats.  After a few days, Jim asked "what's wrong with your mother?"  I had to explain to him that she simply was not sharing her grief with us.

Rick, her brother, Mike, and my Aunt Barb, the Carrolls, the Chances, the Breens and extended Breens, the Taylors, Taylor/Halls, and all our family and her friends will stand with her and steady her.  Just as she is doing for us.

I've always described Jim as having strength and endurance like a mule (and I mean it so positively).  But we are also strong. We know how to cry in the shower.  My grandmother used to say that there was no problem that a face wash and lipstick couldn't help.  I'm sure she too has had a pretty bad week, but to and for me and mine she is steady, steady, strong, strong.

And thank you for everyone reaching out to her directly, too.  It warms us to know we are all so well cared for.

Now, for today.  I thought the highlight of the day was going to be the warm blanket that the RT put over me before the CT scan.  She was humming and muttering about her long day as she prepared me for the CT scan.  Babying me for whatever reason.  The warm blanket and her prattling calmed my nerves just enough to help me exhale a bit.

After the test, I saw what I've seen for the past week.  A quiet, reserved medical professional who could hardly make eye contact with me.  I told Jim I thought it was going to be bad news.  We were quietly sick about it.  We walked around Georgetown until we found a warm corner and we waited.

Our mega millions tickets may not pan out for either of us, but we got what appears to be our first break in eight days.  The CT scan was clear.  I hate to be prematurely relieved as the bone scan is tomorrow.  But this hope business is not prospering for us, so we will just be glad for tonight.  As Jim said, the RT, "she was just a tough Jamaican."  

The best thing about cancer

Jim and I have spent some of our darker hours making a twisted list of what's worse than cancer. I won't share it. It wasn't us at our best but it gave us a few moments of levity and relief.

On the flip side, still twisted, but slightly less, are the positives about cancer. Topping the list today - my breast friends.

A breast friend goes way back for Jim and me. It started as a joke about the absurd nursing product (that is essentially a strap on shelf) called "my breast friend." When Miles was born, we got a hand-me-down "my breast friend." To make it more ridiculous, we named her (it) Dianne. I ramble - Dianne is not the best thing about cancer.

My breast friends are a pretty great by-product of a shitty shitty thing. My breast friends, and obviously, I am making this category up, so forgive me if I offend you with your new label - are this incredible emerging community of support. We've got the breast cancer sisterhood. From long-time friends and daughters/daughters-in-laws of women diagnosed with breast cancer, friends with "complicated" breasts, survivors, friends of survivors, friends of fighters and care-providers. These are the friends and family and friends of friends that know the business, science and life cycles of breast cancer. The perverse pervasiveness of breast cancer is perfectly captured by the fact that I have a book I guess I am supposed to be reading about breast cancer, but instead I just get to call friends and friends of friends to learn about what's ahead.

Then, we've got these incredible, generous and earnestly made offers of support literally pouring in from friends, coworkers, family and strangers. (Don't get me wrong - we need them). Prayer groups. Friends of friends with a similar diagnosis. Playdates. School pick-ups. Ride-sharing. Calls to fight with positivity and aggression. Offers to shave heads in solidarity. Offers to do anything and everything. Those are some breast friends.

Jim just read my draft and says I should be serious and not cuss. So I will add to my list of best things about cancer. The best thing so far is the bracing clarity. My life was instantly stripped of all the nonsense that clutters our days.

Tomorrow to an oncologist. Anxious about that.

Insult to Injury

Seems like this could become a long list. I'll start with being forced to wean Ian. Candidly, I am not ready. As a working mother with a three year old, I do not have a lot of quiet, focused time with him. Nursing is that time. That connection. That bond we share. A gift I give. Really, a shared gift. I know he will be fine. I know there are all sorts of reasons not to nurse or to wean. I simply resent the abrupt end to something so important to me. But, the insult is having to pump. I hate to pump but managed it at work with Miles and now with Ian for their benefit. But at home with Ian in my lap having to pump out the MRI ink for two days and then pump to successfully wean that is insult to injury.

Fake it til you make it

So much for D Day Friday.  We got the bad news early.  

We learned Thursday that we have a confirmed diagnosis of breast cancer, multiple sites.  Lymph nodes didn't want to be left out of all the action, etc. etc.

And yet, Thursday was the best day of the week.  Knowing is a powerful thing.  Jim and I met with the surgeon.  She talked, generally, about a plan - subject to pathology details and more tests.  She was great.  Focused, informative, supportive, emotionally engaged in our situation.  Her staff gave us some hope and some perspective and helped restore our humor.  And our appetites.  After three days of crying, we treated ourselves to lunch, conversation, some laughing and a cry or two.

Friday we talked to a school therapist to help us with the trickiest part - talking to Miles.  We were reminded that he doesn't have all of the associations and burdens we do.  That we can make this small - Mom's sick.  And then follow his lead.  We aren't ready yet.  I feel like we'll have to prep to anticipate his questions.  This kid's intuition will require steely focus and we are hardly steely these days.

More broadly, I'm not sure we know how we are going to handle this challenge.  But all the calls to Jim and me telling us that we can do it and you will help us do it are actually sort of great.  We are coming out of a few days of intense grief.  We still are not functioning particularly well.  But the support gives us a sense of how we will pull ourselves through this heap of crap.

For now, we get up, get dressed, play trains, make breakfast and otherwise carry on.  At some point, we'll get to look back and wonder what were we worried about.  In the meantime, we fake it until we make it.

Huge thanks for the referrals, survivor contacts, food, cheer, distractions and research; Kowats family changing everyone's Christmas plans to join us in Washington; and all the amazing Mt. Peeps boys and girls giving us a big group hug.  SEIU could take a lesson on organizing from the hood.

Friday is D Day

It seems I am going to be diagnosed with cancer Friday. Mind blowing.

I was at a doctor's appointment. An executive perk. Talking to a great GP staff focused on helping busy folks with managing their general health and well-being. I was focused on the Cherry Blossom Ten-Miler Jim and I just signed up for and losing baby weight. Not unimportant stuff.

But I also asked my physician to look at a lump in my breast that had been bothering me. I had discovered it in August and talked to a physician about it in early September. Nothing to worry about. But I asked about it again.

Oh Lordy. The lid came off on Monday.

 I was walked immediately to a sonogram. Multiple lumps -beyond what I was worried about - and lymph node activity. Referred for biopsy. Love the Inova 360 staff. They walked me back across the hospital and when I arrived the physicians had conferred and it was broken down for me as "very bad".   I waited and 360 was able to get me a walk-in appointment in a breast surgeon's office.

I talked to a focused NP who was hopeful my lactating breast were just complicating the picture. We talked to our Moms just in case and to help us bear the load. What a thing to have to tell your mom. 

Biopsy on Tuesday. Three sites, two masses and the lymph node. Radiologist was very serious. Sorry for the French but when Jim and I got back into the car, I summarized by saying "we are f'ed".

Radiologist indicated we are waiting for biopsy results (Friday, hence the D day)... But she mentioned the next steps would likely be an MRI, CT scan and a bone density scan. No reassurances. Quiet, serious demeanor.

 Oh, thank God we had Ian with us to keep us smiling, keep Jim company, keep the car on the road. 

We came home, got Miles and walked around Target in a daze. We made an important purchase - chutes and ladders - which was perfectly distracting for everyone.

I had wept the news to Virginia earlier in the day and Brian, Virginia and Sloan brought dinner, love, strength, confidence and distraction. And Miles and Sloan went wild and kept us laughing. Amazing thank you.

Today, 360 helped again. I sent a note to my dr and asked if she could expedite next steps, including an MRI. First MRI experience later (apparently you are supposed to be really still...if I had known they probably wouldn't have had to retake so many images), more bad news. Let's wait for the diagnosis to delve into all of that.

It isn't Tuesday but the blog is Keeping It Real Tuesday. It is John, my co-worker's joke, and refers to an apparent pattern to my world view on Tuesdays at work - days when I just break it down, unfiltered, tell it as it is. I didn't think I had any filtered days, but just in case I do, here it is, me keeping it real.

For now, I am so sad. I am so sad for my boys. Poor crushed Jim. Poor attuned and sensitive Miles. Poor, sweet, snorting happy Ian. Sad for our families.  Sad for me.  I am scared, too. And I don't even have a diagnosis yet:)

I am working to activate my mind. To move out of the shock phase. To stop crying. To start telling family and friends. I'm sorry if we didn't get to you personally.  It is so damn hard.

Thank you in advance for the love and support we know you'll provide to me, Jim, the boys and our families.