Running into week three and into pinktober

I've made it almost through week 3 of the Couch to 5k program! Tomorrow morning I'll finish the last run of the week. The weather has been perfect for running, which has helped a ton. My new shoes have held off the shin splints so far. Yea! That's a first for me.

Unfortunately my knees are on fire. Can't quite figure out when it crosses the line from 'working out the kinks' to 'damaging your joints'. Advil is my friend. I've had some knee pain in the past but it's mostly been shins, hips and back pain for me. Then again I've never started a running program as a Stage IV cancer patient. I'm just hoping I'm doing more good than harm with my new found excitement for this new program. 

I've really felt the full force of Stage IV in the last few days. Pinktober is upon us and the MBC community at large is all kerfluffle. So much anger towards the callousness of the pink washing all month long. It has caused me to think a lot about how I feel about it all. I don't know. I guess it depends on my mood. I try very hard to be glad for those lucky survivors who have 'conquered' cancer. It is so important to be hopeful and maintain a positive attitude. I was there once too. So there that I went on with my life without another thought. Which is good and necessary to maintain a sense of normalcy. But it also made the discovery of the metastasis an even bigger crash. 

So what do you do? Terrify the 70% of survivors for whom it won't return or bring more and more awareness so that the 30% of us who have it return won't fall into the pit of despair? I wish I had the right answer.  I'm not sure if I would have lived differently if I knew I had a 30% chance rather than the 5% I was counting on. I can tell you though, the crash was HARD. No amount of pink prepares you for that. And in fact it made me WAY less prepared. 

So as the ice bucket challenge may have been unrelated to the disease of ALS, so too is the pink Biffy or the pink toolset (etc etc) unrelated to Stage IV breast cancer, the part of breast cancer that is not curable and is in fact 100% fatal. But, just think of how much that ice bucket challenge made for the study and research of ALS. Bucketloads that's for damn sure. 

Pink washing is awareness. Awareness brings money to support research. Selfishly I hate the fact that the balance is weighted heavily against Stage IV. Hardly any of the money raised by pink trinkets goes to me and my mets sisters' fight. But can I be angry that it might find some early detection that will save the lives of thousands of others walking behind me? I'd hate to think so. 

Truthfully, I'm more concerned about just making it through the next day. Balancing the checkbook that I haven't looked at in months. Helping Katy succeed in her new class while she struggles to find her way. Keeping up with work, which is more difficult every passing month but is no less necessary for keeping us in our house and eating more than popcorn for dinner. Managing the pain and fatigue from the meds that so far have kept this disease at bay. This is my daily battle inside of the larger war against this ugly disease. 

I'd love to be out on the forefront of the advocacy for MBC. I am grateful for the strong women who can do it. And maybe some day I can too. Maybe my few and faithful readers can help. Remember us living and thriving with metastatic breast cancer would you please? Learn about Stage IV at metavivor.org. Know that it's not a fluffy, pink world out there for everyone. 

And so it begins - pink is everywhere

It creeps up on me every year, the pinkwashing of every product from soup to nuts (literally and figuratively). And unfailingly, I am asked how I feel about it by friends and strangers alike. Well that's a complicated question and one that's been answered in every form by every type of person you can imagine. Survivors, caregivers, experts in fields related and unrelated to cancer and also the average joe. I can't say what it means in a broad scope. I can't even say what it means to me because it changes yearly, hell even daily. But as a single mom, coping with a diagnosis of metastatic stage IV breast cancer I've learned to go with the flow. If I feel like Pinktober sucks that day, I can say that. The next day I might be more optimistic.

I've discovered there's a cycle I've gone through since I first noticed there was such a thing as a pink ribbon. Similar to the stages of grief (which a diagnosis brings on anyway), the pink ribbon has had stages of feelings.

Blissful Pink
Still in the sunshine and butterflies pink, blissfully ignorant of it all, just noticing the pink, not sure what it means or why I should care. "That's a pretty pink ribbon, and breast cancer seems bad so it won't hurt if I donate to something helping it." "Oh, breast cancer. My neighbor's sister had that but she's cured now." 

Desperate Pink
Crap, crap, shit hitting the fan pink. Now I have it, what do I do with it. Get a kick-ass wig, a prayer shawl and a parking pass at the hospital.  "Well the pink ribbon helped others, it's sure to help me too."

Invisible Pink
Pink? What pink, I don't have breast cancer anymore pink. Get a certificate for finishing treatment, get hair back and try to forget it ever happened. It's the head in the sand approach that doesn't really work when it's everywhere. "Pink, sure it's all good but that's behind me now, I don't need it anymore."

Angry Pink
Despair and anger from the depths of my soul pink. Goddamn pink ribbon didn't fucking do anything for me, why should anyone else get to feel good about it. And why should they anyway, it's not like it's cured or anything. "This wasn't supposed to happen, the pink ribbon said I was cured." "What good is early detection if it doesn't do anything to the outcome?"

Amicable Pink
Just like an amicable divorce is still a divorce, guess what, cancer is still a terminal disease pink. Regardless of the statistics, someone will die from it. Maybe not you but someone. Does that mean we shouldn't have raised awareness? Does that mean it should be all about me, the 'loser' in the fight? Guess what, I haven't lost yet. I'm still a survivor, even if my pink is a bit tarnished and battered. Let's just not forget that for all the early detection and 'cured' survivors, there's someone out there living the battle every day. And living with gusto and grace. "Yes I have breast cancer but it doesn't have me, and it shouldn't have you either."

On any given day, I might fluctuate between some or all of these stages. I wholeheartedly support my meta-sisters in the fight to remember the 30% of us who don't get to forget it ever happened. I also support the early detected, treated and released survivors who are lucky enough to be in the majority. Sure wish I could be one of you and I hope you can stay there forever. But as long as I can't, consider me thankful to be here to debate the issue.

For once, a post not about Katy or Riley!

Seriously, you have to see this movie if you have kids and even if you don't...

I thought I'd do a brief recap of my health, in case anyone is still wondering. After going through the whole breast cancer thing in 2009, I was all about the adoption and getting on with life. A few months after Katy came home, I was diagnosed with Stage IV metastatic breast cancer in my liver and lymph nodes. I mentioned it once briefly here but I'm not one to go on and on (unless it's about Katy or Riley, apparently). PS I should note here that my humor sometimes goes a bit onto the dark side so be warned.

Needless to say, the news was a game changer. This time around, it moves from 'cureable' to 'treatable as a chronic condition'. Yeah, one that will kill you. Super. I did chemo again, this time orally without having to lose my hair. Neato! I did have hand and foot syndrome, causing my palms and soles of my feet to get red, swollen and sore. Thankfully I didn't have it as bad as I have seen it to be and I'll gladly take that over losing my hair. Somehow that would have been too much to handle a second time.

November 2011 to May 2012 was a blur of doctor visits and exploring complementary treatments as well. My company was (and is) truly a magical place and gave me a leave of absence to heal. I found Pathways and tried many different classes, treatments and groups to help figure this sh!t out. If you're in the Minneapolis area and are ever in need, I would definitely recommend going there.

I came back to work in June, to a new position that didn't involve client meetings and intense scheduling/juggling. I'm happy that I can still contribute in a way that was needed and it's always fun to learn new things. Like many of my MBC sisters I've connected with, it's feels good to still feel like a productive member of society.

As of December, my tumors have graduated to 'stable'. Woot! The chemo did it's job and I mostly did ok with living and eating a healthy lifestyle. Ok, well some anyway. Man that's hard! There's no knowing how long this maintenance drug will keep working but I know there's an arsenal of other drugs to take once it does. I go to see the oncologist every three months to see if my tumors are still sleepy. So, if you catch me the week before, don't be surprised if I'm jittery, spacey and distracted. It's a roller coaster ride waiting for the crest of the hill. Every.three.months. But each good report means more time to soak in this great life. And I wouldn't trade it for anything.

The moral of this story is I'm not dying until I'm dead (thank you Valerie Harper) and let's just have fun while we can. Make hay while the sun shines and all that.

Are you making hay?

Casting for Recovery weekend

While perusing the flyers at Pathways, I came across the Casting for Recovery brochure. If you haven't heard of it and are a breast cancer survivor, you should definitely check it out. They host fly fishing retreats across the country. And it's free for participants! It is positively amazing how generous people can be and I for one am truly appreciative of their donations of time, money and spirit.

Our retreat was on the first weekend in June in Siren, Wisconsin. We had time to socialize and get to know each other. Then we got into tying flies, learning to cast and making lanyards for our guides and prayer flags. It was so fun! And finally on Sunday morning we each got our own guide and we tried our luck at actual fly fishing. I met some beautiful and strong women, both participants and volunteers. We had lots of laughs and a couple of tears too. I was the only Stage IV girl there, thankfully for them but sad for me. Nevertheless we bonded on that level that facing cancer brings. If I could do it every year I would. Maybe I'll become a volunteer...

We gathered up all our gear and learned to tie some basic knots

Outside of the Lodge at Crooked Lake we tried our first attempts at casting

It's good to have a bit of instruction first!

One of the neat things about the weekend was the swag, I'm not gonna lie :-) We had goodies on our beds when we checked in and when we left. We also got a graduation bag of goodies. At lunch one day we all had our names drawn for gift baskets. At The Hartford, the main sponsor of the retreat, the employees have contests to make up the best gift baskets. The winning baskets are given to the participants. When my name was chosen I got a big styrofoam cooler of grilling utensils and condiments which was great but I had most of it already. My table mate drew a box of cupcake making goodies. Didn't take too much for us to realize we liked each other's baskets so we traded! Her husband was going to love all the grilling gear and I'm making cupcakes. yea!

This is a wooly something or other. I did not catch a fish with it but it looks like a fish would think it was tasty. I guess?

My prayer flag

The beautiful Crooked Lake

Gotta have all the gear, right? I'm suited up and ready to fish.

Knapp Creek, just south of Siren. A beautiful place to be, fishing or not!

Proof I caught a fish! No that's not bait, that's the fish.

My new friends Lisa and Catherine (her guide) reeling in one of her catches

I couldn't have wished for a better weekend. Great company, great weather, great fun! 

Mother's Day Race for the Cure

I decided this year I wanted to try the Komen Race for the Cure. The local radio station was giving away a plane ticket to bring someone to walk with you and I thought maybe I'd win it. Indeed, I didn't but I'm glad we went anyway. My cousins Kathleen and Karen joined us and it was a beautiful day for a walk. I'm not sure I felt any more connected to the cause. In fact I felt a little on the outside. In the pink washing that is associated with that pink ribbon, no one really talks about those of us fighting the metastatic battle. The not-so-happy, smily and pink part of cancer. I'm really happy about all the money that gets raised for screening, prevention and early diagnosing. Disappointed that more doesn't go to the 30% of us who see it rear its ugly head again, much too soon. In any case, I'm glad we went and now, even if we don't ever go again, we'll have the memories of a fun day!

Here we are pre-race...

 Amidst the mass of pink people

 Catching up with some of my Yoplait friends

 And post-race winding down

All in all it was a great way to spend my first mother's day with my angel!

May Highlights

I know I still have some catching up to do so I'll break it down a bit. May was a good month for us! I finally got the ok to finish chemo for good. Or at least for hopefully a long long time. I started back at work, then ended up taking two weeks off to recover from a hysterectomy. That was fun, oh yea. Amazing things, these robot surgeries. Only four little incisions and I was up and around soon after. Wild.

I got to attend a k.d. lang concert! She is an amazing singer. I only wish I could have jettisoned the rude woman next to us. She came in late, breezing in on a cloud of freshly smoked cigarette smoke. She proceeded to spritz herself with some kind of smelly whatnot and then pulled out the smelly lotion. Once she was done motioning her hands, she removed her shoes and lotioned her feet. And the final touch was then taking out a wad of gum and chewing it so loudly I could hear it over the concert. Good lord. Some people create a large wake, no? Ish. Other than that, the concert was fantastic!

Katy has grown by leaps and bounds. She started out below the first percentile in height for her age and now stands at 66%. She's almost a yard tall now. Not yet jumping from two feet but walking is getting stronger and faster. Speech and occupational therapy are happening at daycare. By all accounts she's catching up quickly! I made a weighted blanket for her which appears to work wonders to get an antsy kid to sleep at nap and at bedtime. Working on a second one we can leave at daycare. More on that later.

I celebrated my birthday with a dinner at Red Lobster with my parents. I know, going all out, right? Katy ended up eating crackers and ketchup that night. Oh well! This is our thank you for the fun birthday cake present from Aunt & Uncle...

The month ended with a great visit by my sister and her mister but I'll save that for it's own post. Here's a look at Miss Katy, having fun and getting to be a big girl!

Sliding on the big slide for the first time, don't her legs look long?

Falling asleep at the table...

We're having fun, who needs toys!

Rockin' the free hairstyle!

And finally, a dip in the pool.

We'll be back again soon!

Catching up

Hello again to my few but faithful readers! I'm back in the saddle and ready to get back to regular posting.  And by regular I mean more than once every four months anyway. So here's the scoop on what's been happening in our house...

Katy is amazing, growing like a weed and always in constant motion. Just looking at the last post I made she seems so different from that time! Such a sweet, confident, sassy kid I feel blessed by her every day. Like so many kids these days she had ear tubes placed in her ears to clear out fluid. They fell out already and she got new ones last week. She's still not saying real words much (but talking in Katy language constantly) but I think with the clear ears we'll be having two way conversations in no time.

The day Katy had her first tubes placed I had my own doctor visit for a liver biopsy. I had gone to the doctor with a pain in my stomach. I was hesitant to go because I figured it was something embarrassing like gas or indigestion but for some reason I decided to check it out. Unfortunately my breast cancer has returned in my liver and abdominal lymph nodes. damn. No longer one of the happy pink ribbon survivors but one of the many stage 4 fighters that don't get much media coverage. I took chemotherapy pills until mid April and I'm happy to report that my tumors have reduced greatly and I'm on my way to what is hopefully many years of stability.

I've spent the last few months really paying attention to my body, being good to myself and enjoying every minute with Katy, my family and my friends. I have such an amazing support system that has bolstered my mood so many times I can't count. I've decided I just am not ready to be done with this life yet. Katy deserves that. Hell, I deserve that, don't I? In any case, I'm not going anywhere any time soon.

So enough of that nonsense, I'm sure I'll have more on that later but not today. On to some Katy eye candy, that's way more fun anyway.

December was busy with holidays and special events and a lot of sleeping (for me and Riley) and playing (for Katy). We enjoyed having my sister and her family here for Christmas.

While they were here we had Katy's baptism, in the same church I was baptized.

(here's what a good bit of the end of the service looked like)

January brought the completion of a major project, finishing the basement. It turned out so well I want to do the rest of my house! Guess I'll have to wait on that.

Then we headed to California for a welcome home party for Katy with west coast relatives and friends. It was so great to see everyone! And Katy did pretty well considering there were not many childproofed places and naps happened whenever we could. I was pretty tired but we managed to fit in the party, some fun at the beach and a trip to the zoo.

February and March we started gymnastics and generally lounged around at home.

April we celebrated our first Easter together with an Easter Egg Hunt at our friends' house. Katy got to wear the dress I knitted while going through treatment with a variety of shoe choices from white patent leather shoes, to red sparkly Toms, to Sorel winter boots. We dyed eggs and she slept through brunch at the restaurant. We also took our first trip to the Children's Museum with the daycare. Bless the hearts of the teachers there I'm amazed at their strength and patience, I had to sleep off the afternoon after only a few hours with all those toddlers!

And now it's almost May. I'm excited for the summer. Katy's already spent some time in the kiddie pool in the back yard, even though I thought she'd get cold. Maybe the rain boot shoe choice helped keep her warm? We are headed to the park more often and enjoying the outdoors. I love spring in Minnesota!

Sorry that got a bit long but it was five months worth. I hope the last few months were good to you. I'm glad to be back!

Latest Updates and Two Year All Clear!

Sometimes you don't realize you're holding your breath until you let it out. That's how I felt this morning. Last week I had my follow-up MRI and mammogram and today was the appointment with the oncologist. Until she said those wonderful words "Everything looks great" I had no idea how it was weighing me down to wait. It's funny, you know that you feel good and so you think everything will be good but then you think that you felt good before and it went so terribly wrong. But not this time, and hopefully not ever again. I feel like a huge weight just flew off my back. Could not imagine what I would have done if, with travel to Ethiopia looming in the near future, I had heard something else. Thankfully I won't have to think about that any more. The end. For another year anyway.

And speaking of travel, I have a court date! I'll be heading to Ethiopia in March to meet Baby G for the first time. It's finally becoming real! Plane tickets are purchased and I've arranged a few days in London before and a few days in Israel after. Can't say that everyone is 100% excited about my itinerary but I am! Looking forward to seeing my friend Jon and the sights of London and Susan in Israel with all of her wonderful puppies. The extra travel added much to the cost and time of the trip but I know it will be a long time before I'll be able to travel solo so I'm taking it in now while I can. Originally I had planned to also take in the Seychelle Islands. Sigh. So much money and so little time. I've had a picture of the Seychelles on my fridge for a long time now but it won't happen. Then again, I'm not so sure I really want to go to the most beautiful place on earth by myself, and only for a few days. Guess I'll save that for some other lifetime.

The reality of it is that I'm finally feeling like it's really going to happen and I will actually meet my daughter. It sounds so wonderful! I'm so not ready and yet more ready than I can even express in words. Enough limbo already, let's get this show on the road! Sunday (with the help of my fabulous cousin Lexi) Baby G's room was painted Pale Shrimp pink. This weekend I'll apply the daisy decals I bought from Etsy and head to the fabric store to find fabric for curtains and a valance. Assuming I'll be able to figure out how to sew curtains and a valance it should work out well! Boy I sure hope she likes pink and flowers!

Saturday I ticked off one more item on the to-do list and painted the kitchen. Sadly to anyone else it doesn't look so much different than it did before but I think it looks brighter and fresher. And as a bonus, the floor under the refrigerator and oven is now clean as well. eew. One bad idea for the weekend was running the oven self-cleaner. Ugh. Here's a tip...don't. At least don't do it in the middle of winter when you can't open your storm windows and it's cold outside. Save it for summer when you can open the windows and leave the house for a few days. It stinks! I wasn't feeling so well and Riley took a couple of days to recover I think, poor thing. Clean is good, just not the smell. Now if I could just finish those Christmas stockings I'll be back on schedule. Knit, purl, knit, purl...they just go on and on!

That's life in a nutshell for this day...

One Year All Clear!

Today I visited my wonderful oncologist for my one year checkup following surgery, chemo and radiation. Technically I finished on the August 23rd, 2009 but what's a few days among friends, right? I tried not to be stressed out about it but it's pretty difficult to not think about what could happen. Even though I know there's a very good chance nothing bad will happen. I guess I'll never look at a doctor's visit without a little more butterflies than I did before it all went south.

But without any fanfare and only one little needle poke for lab work, I heard 'normal, normal, normal'. Gotta love being 'normal' for at least something in life! Looking back, it was a long summer of doctors and driving and needles (ugh) and then it was over. Just like that. In the blink of an eye. I wish I had started my blog before treatment because I've forgotten so much about what it felt like to go through it all (yes Susan, you're right again). But then again, I'm not sure I could ever be as eloquent as others I've followed like Suburban Matron. I remember bits and pieces. Like wondering how bad it was going to get and then finding out it wasn't as bad as I had imagined in my head. Not that it was wine and chocolates but it wasn't months of bed rest either.

I remember feeling off. And so tired it was like someone opened a hole in the bottom of my feet and drained every ounce of energy out. Not sleepy, just not. I remember driving. a. lot. Not only for doctor's visits and chemo treatments but 35 days of radiation (but not on the weekends because cancer doesn't grow on the weekends, duh) and the nice lady who ran the ticket booth most days. She tried to learn all of our names and usually got it right! Sadly, her name is one of the things I've forgotten. Also, all of the wonderful nurses who swept in and got me breathing again when my body decided that Taxotere would just. not. do. Debra, who came over with groceries and Connie who drove me home after said non-breathing chemo event. And all my friends who walked, ran and biked for the cause, you rock!

My treatments were all done at the Frauenshuh Cancer Center which had just recently opened. The treatment rooms all look out onto what was to become a healing garden. When I was there it was dirt. Then it was dirt with a tree. Then trees, shrubs and still dirt. Finally, right around the time of my last radiation treatment it was done. It's beautiful and I hope that it helps the people in those same treatment chairs rest a little easier. I took some pictures today because it was too nice of a day to forget.

And now, my one year all clear happens to fall on the same day as my five month marker of wait time for my referral. Two very good reasons to celebrate I think! It's all about getting on with life and man am I ready.

The final step

Yesterday I took the final step in my cancer journey with reconstructive surgery. No implants, but now I'll be back to normal, with no divot where the cancer used to be. Sore, yes. Excited, yes! Tomorrow I'll be able to remove the bandages and see the new me. woo hoo!

What a difference one year makes

Almost one year ago I received a call from the doctor to say that I had breast cancer. It was a Friday afternoon, coincidentally the same day as the annual work holiday party. I think maybe I was numb but I don't remember much of the party. That call started a long journey for me, one that I never would have expected to take. In the end, it forced me to look deeply into what I really wanted out of life. Hence the adoption, my next journey and hopefully a much more fulfilling one.

How it went down...

1/28/09 - routine mammogram

2/4/09 - Ultrasound and biopsy

2/6/09 - Got call from patient coordinator, learned of the cancer, Stage 2A, Grade III, no lymph node involvement

2/9/09 - Met with patient coordinator, time to make decisions on surgery

2/10/09 - MRI

2/11/09 - First appointment with radiation oncologist, more paperwork to read

(2/16 - 2/25 trip to Costa Rica)

3/2/09 - Met my surgeon

3/6/09 - Lumpectomy, outpatient surgery

3/10/09 - Met my oncolgist

(3/22 - 4/6 cruise to Hawaii)

4/8/09 - 1st chemotherapy - Taxotere and Cytoxan, experienced allergic reaction to Taxotere but able to finish. Slept most of the weekend.

4/22/09 - Hair loses the battle, head is shaved and wig comes out.

4/30/09 - 2nd chemotherapy - Taxotere again, but reaction was too strong so treatment stopped. Still slept most of the weekend.

5/21/09 - 3rd chemotherapy - Cytoxan and Adriamycin this time, followed by a Neulasta shot the next day. Not a fan. Sore and tired now.

6/3/09 - 4th chemotherapy - AC followed by shot again, uneventful.

(6/5 - played in annual golf tournament, would have made all 18 holes if not for the 45 degrees and rain)

6/18/09 - FINAL chemotherapy - same as before but better because it was the last one

7/8/09 - 1st radiation treatment, followed by 32 more, every day for 6 weeks

8/26/09 - FINAL radiation treatment

9/3/09 - Final appointment with my oncologist, everything is looking good!

9/4/09 - Decided to get on with my life.

I had so much love and support from family, friends and even random strangers. Restores my faith in humanity a bit. Still feel badly that I never managed to send any thank you cards for all the cards and gifts and more importantly, the help and support. Now, to look forward and never forget how life can be taken away from you in an instant.