I [Heart] My Life

Escape from Cancerland!

Rule #6 in Parenting with Cancer: Hit the Road. 

As much as my treatment will safely allow, I plan to take a vacation from cancer now and then and have an old fashioned BC adventure with my kiddo. This week we went to Harley Farms Goat Dairy in Pescadero for a little relief. Driving up Highway 1 with the ocean right there on the left is pretty thereaputic in and of itself, but then the farm was beautiful and Nia enjoyed the goats so much -- though she especially enjoyed playing in the gushy mud puddles and tasting everything in the cheese shop! My dad joined us at the farm and later we had lunch at Duarte's. It was the perfect escape before starting up the chemo again. 

Almost there....

This young worker was so nice to bring out a baby goat for Nia to touch and feed. Later she brought out a total of 8 little ones and put them in a pen where human kids could more easily enjoy watching them do their silly goat kid antics. 

Parenting with Cancer

Where is the class that will teach me how to do this? Where is the book that says, "To survive cancer is one thing, to survive parenting a nearly 4-year old while you have cancer, is quite another. Here is how you do it with grace and humor...."??

All my common sources for parenting info fall a little short in the "sick parent" department. Dr. Sears is missing a niche market. Where is Attachment Parenting with Cancer? Come on Lawrence Cohen, where is Playful Parenting for the Chemo Patient? Alfie Kohn? Unconditional Parenting for the Bedridden?

I guess it's just you and me, kiddo. 

So far I have gleaned a couple "rules" of survival I can share:

Rule #1: Go for a walk, every day.

 Fresh air can make all the difference, especially fresh air with room to run and jump and explore. It doesn't have to be a long walk, and it doesn't have to be fast. Just open the front door and go, no matter the weather. Bring a snack and water, and just go as far as little feet and the cancer will allow. 

Rule #2: Turn on some music. Music can fit any mood -- and turn around a great many bad moods, too. Keep it flowing from morning to bed. 

Rule #3: Let there be art.

Let art happen wherever and whenever it must. Let the frustration out and the creation in. 

Rule #4: The daily/nightly bath. This one serves two purposes: The bath is relaxing and fun for little ones, and if you bring in your book & tea and take a seat, it can be an extra 15, 20, 30 minutes of peace for yourself, too where you aren't having to facilitate play and make snacks or clean up a mess, etc. Word to the wise: Put a towel around the base of the tub and turn a blind eye when water and bubbles come out over the edge. There are worse things than bubbles on the floor. Also, nightly baths can help curb the raggamuffin, crazy-kid, mama-has-cancer-and-hasn't-combed-out-my-hair-in-days look. 

Rule #5: Call on friends and family for help.

This is huge. Let your friends and family take your kid out for a puppet show, or to the park, or out for ice cream. If they aren't volunteering, ask them to help you. Your litttle one will feel refreshed and excited when she comes home, and you'll have gotten your peaceful center back while she was away. 

We'll get through this, bug. We will. 

 

Activate Power Port

Yesterday I had my first-ever surgery. I had a "power port" installed at my clavacal to aid in my chemotherepy injections. Its legal name is "the Dignity CT Port." I think the dignity part is funny. Like, before the port, it was kind of embarrasing just to get the chemo through an IV? Maybe that was soooo 2011. Thank you, MedComp, for saving me from that cancer faux pax!

Now that I have the port, the chemo nurse will give me infusions straight into the port in my chest, which includes a little chatheter below the skin that feeds down toward my heart through the central vein. The main reason for this is that wrist and arm veins tend to get cranky after a lot of use, not to mention sore. So the port will help me go the long haul required. (And it'll be removed after all this is over with.)

The surgery wasn't so bad. It is a pretty quick procedure. I checked in to Sutter around 1p and was released shortly after 4p. Joe, my ever patient cancer buddy, was with me up till they wheeled me away. 

Here I am before the surgery, modeling the awesome compression stockings I got free with the surgery:

The surgery itself was only an hour. I opted for the "relaxing cocktail" verus having them put me all the way under, but it turns out my body had plans for a nap anyway. I remember being wheeled into the OR and I remember talking to the surgeon about him needing to tape my boob down (sure, whatever), and the next thing I knew the anesthesiologist was praising me for doing such a good job and it was all done! 

It isn't much to look at, just an incision with clear glue all over it and a bruise, but my shoulder is really sore. I can barely lift up my right arm and my neck is sore, too. But already I'm not as sore as I was last night. 

Just another step down the road to being a survivor. 

Sinking So Low, Or The "Why Me?!" Post

It blows me away that a lump, a black hole on an ultrasound, could rob me of so much.

How is it possible to have so much and then have the whole world turn upside down? This was supposed to be my year. Just a couple weeks before the diagnosis, I was catching up with my friend Erin on the phone. I was driving down 880, Nia had just conked out in the backseat after we'd taken the ferry from Oakland to SF for dinner (an awesome day!). Erin was asking what was new and I was grinning ear to ear admitting that that nothing was really new per se, but it was all soooo good -- like everything I'd put into motion the last few years was settling in this most delicious way: The healthcare divison of conferences I'd built from scratch with my friend & colleague Corinne; my marriage -- I was working on loosing a few pounds so we could try for a pregnancy in 2013; my parenting -- Nia was blossoming into such a lovely young person and starting to stretch her wings and find her own balance of freedeom; with Nia's schooling -- Joe and I were working with other parents to pave the way for a Montessori Charter School. And it goes on: With nutrition, with gardening, with blogging, with photography, with personal relationships, with starting a little flock of chickens in our backyard....

This was the year to enjoy it all. 

And then I felt a lump and saw a huge splotch on the ultrasound. And all the air in the room got sucked out.

But even when I heard the words breast cancer, I didn't really know what the toll would be. I still don't. But last night I got a taste. 

Last night my little one called me a bad mother. She didn't say it to push my buttons, she said it becasue she has no other way to express what is happening -- which is that I've changed. In two short weeks, everything has changed. She's so angry and confused. As she cried herself to sleep because I can no longer nurse her gently to sleep, I sobbed too. I brought this thing into our house. I fucked up everything we had going for us. 

What cancer is: It's a time robber. An energy sucker. It zaps joy and leaves fear. It is yet another part-time job: doctor's appointments, research, conversations & meetings, budgeting, synchronizing schedules... It is pushing my little one out of the nest before she might be ready. Date night with Joe? Make that a chemo date instead. What about my real job? Will this black blob take that, too? Kids down the road? Who knows. Treatment might trigger early menopause. 

How much can one disease take? At first I feared for my life. I'm over that. There is no way I'll let this disease kill me. But what price will it extract in the next year? When the dust settles, what will remain of my family, my relationship, my job, myself... 

I like to think we'll be stronger for this experience. You know, the so-called gift of cancer. My daughter will think of me as a fighter. I'll have life all figured out and know how to get the most from it....

Only time will tell. For now, I'll take this one day at a time. Today the sun is shining and I'm sitting up in the living room. I'm tired, but not immobalized. My mouth feels funny as the Taxol Mouth takes over, but I'm not too nauseas yet. And my little one is happily making cookies with her auntie in the kitchen. Small blessings to can add up to a lot. 

Before I Had Cancer...

I hope my blog doesn't become a cancer blog. Though that is hard to imagine since everything now seems to revolve around the cancer... Doctor appointments, insurance, treatments, childcare for the aforementioned appointments and treatments, prescriptions, feeling the lump (is it still there? is it bigger? can you see it popping out now?), support groups... 

Let's go back in time for a moment. Let's go back to the first weekend in March before cancer was even on the menu. Just 24 days ago.

My birthday weekend: March 1-6, Carnelian Bay, Lake Tahoe... 

(Nia is to the left of the TV, with her nose in a sticker book.)

(Eating snow. This will go on for a few pics...)

(Of course Roscoe came out to play in the snow, too!)

 (And we made a snow woman just for Bama!)

These pictures make it seem like it was just Nia and I on this trip, which wasn't true. Joe was there, but on the days I shot these pictures, he was sick inside with the flu. Just when he started to feel better, Nia came down with the flu and spent the last 3 days of our trip asleep on the couch. But I'm still glad we went, especially since we all needed the vacation -- and man did we need it had we known what was on the horizon!

Here's to more carefree days to come!

 

 

Cancer College: Chemo 101

Here I am, first day of chemo school. I might not have even had the Taxol going into my vein at this point. It may have only been Benadryl and Pepcid but whatever -- the show was getting on the road! It felt really good to be doing something proactive finally, instead of all the scans. Sure, I was feeling nervous and unsure of how my body would react to the drugs, but mostly I wanted to get to the fighting part. 

Here is me a little while later. Thanks, Benadryl.

Don't worry, the whole time I was dozzing I was thinking this:

Once they started the Taxol, they gave me another steroid so I was up again and feeling less tired. This treatment yesterday lasted about 3 hours, and then I go in today for another 3 hours for the second drug, the Herceptin. These first two are longer because they want to be really careful I don't have an allergic reaction to any of it (hence the Benadryl). 

Going forward, I'll do a combo treatment of pacilitaxel (Taxol) and Herceptin for 12 weeks, once a week. It'll be a long day, probably 5 hours in the clinic. Then, it sounds like the steroid will keep me amped for a couple of days and then things will start to wear off and the fatigue will kick in along with the "flu-like symptoms.") I have a prescription for the nausea plus ginger chews and I also picked up some papaya enzyme tabs that I recall working wonders when I was pregnant. 

They also gave me a prescription for an anti-anxiety medicine that I took last night when I found I was going a little bonkers with the steroid. I was tired, but my mind was going a million miles an hour -- and not in good places. So I took that and it knocked me right now, only to have the steroid wake me up at 5:30a. Oh well. At least the unwanted thoughts are at bay.

A good surprise we learned yesterday was that I might not loose my hair in this first round of chemo. I'm not sure what cocktail is coming down the road that will do that, but for now I get to at least continue to look like myself. I like the idea of starting to battle looking normal (minus the mascara -- a no-no for folks with low immune systems). (Though one side effect of the Taxol according to the books is hair loss, so I won't be too surprised if it does sneak up on me.)

Wednesday we took a few pre-chemo pictures at the park with Nia. We haven't told her everything about what's coming, but she knows I'm now taking the "big" medicine, the chemo. She uses words like cancer and tumor. She often asks how the lump got in there and when they'll take it out. She frequently looks through the dog eared copy of Dr. Susan Love's Breast Book at all the pictures of lumps, biopsies, surgeries, milk duct diagrams with rapt interest. Maybe she'll grow up to be a kick-ass oncologist and help rid our planet of this horrible disease! 

Here are a couple pictures Nia took of Joe & I:

And all of us, cancer can't keep this threesome down!

It is tricky keeping things normal for Nia. Doctor appointments have completely taken over my life these past two weeks. Don't believe me? I took a picture of the calendar:

(Don't worry, the vet appointment on the 13th wasn't for me!)

But we're kind of figuring out how to live with cancer. With a three old, living isn't lying on the couch feeling sorry for yourself. Sometimes it is taking a time out alone but other times it is pushing it all aside and heading out to the park. This is where friends come in handy too. It is nice that we have some many wonderful friends who are willing to take Nia for an hour or two here and there and keep her days fun and engaging. I don't want this to be her Lost Year, too.  And so, life goes on as close to normally as possible. With maybe a few fun-ish perks thrown in, like Nia is now in charge of taking my temperature every day and coloring it on a chart (I have to be careful to watch it because if it goes to 100.5, I could land in the ER.) Paging Dr. Nia...

(Making chamomile tea for us.)

I know I'm a chemo newbie and this thing will probably have me in bed a few days a week, but on the other days I still want to be Nia's fun, silly, adverturesome mama. I want to be Joe's funny, playful, sarcastic life partner. And help from friends and family will help us through, I know. Thank you for all the love, support, and encouragement!

 

Tomorrow, We Fight

Fight and you may die. Run, and you'll live... at least a while. And dying in your beds, many years from now, would you be willin' to trade ALL the days, from this day to that, for one chance, just one chance, to come back here and tell our enemies that they may take our lives, but they'll never take... OUR FREEDOM! 

I couldn't resist. I'm feeling a little Braveheart as I head into battle tomorrow morning against my cancer. 

9am chemo. My oncologist kind of spung this on me tonight. I had expected to start next Monday or Tuesday, after having a "power port" installed in my chest. But today my lump was a little painful and hot. Dr. Y said it is not an emergency, but confirmed his feeling that we better get treatment going. 

What does one do during chemo treatments? Read? Watch videos? Bananagrams? I guess we'll find out tomorrow. 

I had a vigerous schedule of tests this week: Blood work, bone scan, CT, and echocardiogram. Think: lots of needles and some very expensive and very big machines. I met some nice techs along the way and so far it seems that all the tests were negative for more cancer. Phew!

I now know my cancer is Her-2 positive, which means it is over-expressed for Her-2. But there is a specific cancer drug for that called Herceptin. So while Her-2 cancer is the more aggressive and enterprising, it also has an Aquilles Heel, which can be targetted by the Herceptin. 

Tomorrow, my life changes again. The first change was finding out about the cancer. Now with treatment, I'll finally start to look like a patient (and likely feel like one, too). It will be a challenging chapter, but I'm ready to get this show on the road.

The Antidote to Cancer Woes

What better way to lift the black clouds of breast cancer than a giggly 3-month-old? I interupt this week of organ scans and chemo plans to present Beatriz and Joe, sharing a laugh while some big diaper work happens. Thank you, Michelle & Baby B, for bringing us back down to earth and the stuff that really makes life grand!

 

 

Cancer Elves

I met my new oncologist yesterday. I liked him right from the start. He's got to be the smartest person I've ever met, which is pretty reassuring, considering.

I liked how he talked about a strategy to go after my cancer. He explained that cancer is cells that have reverted to their more primitive ways. Long ago, when we were all single cell organisms, our cells started to divide and grow, look for blood sources, spread, etc. And then we evolved. Cancer cells are just cells reverting to their more primitive nature of dividing and changing and conquering. Ambitious little Darwinian beasties!

So now I'm imagining my cancer as highly-amped tiny elves setting up a little workshop in my breast that goes 24/7, trying to make something. Wholly mammoth, perhaps? Or maybe they are like the family of the Once-ler in the Lorax who invaded, cut down all the Truffula trees, and then set up a huge toxic factory making useless Thneeds... Is my cancer trying to knit Thneeds?? 

Anyway... a battle plan was scralled across a white board in multi-colored ink. My cancer is aggressive, large and advanced, so it needs similarly aggressive and advanced plan of attack.

Here are the particulars of what we are dealing with, so far:

Type: Infiltrating ductal carcinoma with metastatic adenopathy (translation: ductal breast cancer, which is the most common type of breast cancer)

Receptors: Hormone-receptor-negative

Her-2 positive: unknown as of yet

Grade: 3 (which means it is the most primitive, aggressive type of cancer cells on a scale of 1-3)

Stage: 3 (on a scale of 1-4, which means it is large and has spread to at least 1 node; tumor measures 5 x 6 x 7 centimeters)

A big question right now is, has the cancer spread anywhere else? Breast cancer likes to travel to the liver, lungs, kidneys, and brain. While I'm not having any symptoms of bad stuff happening in these organs, my week ahead will be filled with lots of scans of these organs. 

While some people might opt to remove the tumors first and then go for chemo and radiation, my oncologist made a good argument for chemo first, then surgery. He said that given a tumor this size, the likelihood that it has spread is pretty good. It may not show up on the scans if it is still microscopic, but we can't assume it hasn't been an enterprising little bugger since all signs point to it being so (hell, it seems to everyone like I didn't even have the sucker a month ago and now it is already plum size?!). So we'll start with chemo to get anything else that might be happening throughout my body under control. 

Starting in a week or so, I'm looking at 4-5 months of chemo followed by a short break (2-3 weeks), then surgery to remove the lump on my breast and the lymph nodes, and then more chemo and radiation. The lost year...

Next stop: Attractive head scarves and awesome wigs. 

 

 

Cancerland

There is decidedly too little Heavy Metal in cancer. 

I always thought that when terrible things happened, I'd want to sit in a dark room with Sarah McLachlan on repeat, but I'm finding that is not the case. At least, not right now. 

Put the watercolors aside. Turn off the soft music. Open the blinds. 

Let's blast the music and stomp! Whip our long hair around (while we still have it!). Get the adrenaline flowing! Line the walls with weapons!

Joe said to me yesterday, "If you get a mastectomy, you've got to put some ink on that." Hell yeah.

"Tree" by Deena Metzger. That's what I'm talking about!