Monday, August 29, 2011

Walking Fool

Sorry I haven't posted in a bit. I have been walking, walking, and walking.  Like they said about Forrest Gump being a "running fool" I have become a "walking fool'... I am getting serious about training for this Avon Walk.  Last week I bought my pedometer so I can figure out how much I walk in a normal day just doing errands, chasing after Abby, etc. etc.  That was about 2-3 miles a day.  Then I started walking with David up Westridge first. That is a haul. I love living in our Canyon. It is so darn beautiful. It is about 2.5 miles up to the top of the Westridge Trail Head from our house (that is straight up), I wish the pedometer would include the incline factor but I digress... I started out doing that. The 5 miles then became exploring the random streets in the Upper Westridge Area and then I walked about 6.5 miles one day.  I'm building up each day. I wish it wasn't so darn hot though...makes training tough.

The day I walked 6.5 miles (in addition to my 2 miles of regular walking) was pretty hot by the time I finally got out to walk. When I was almost home I noticed that my left hand was swollen.  Oh that freaked me out big time.  Since the surgery I have been worried about lymphedema. I haven't had any swelling except for the first day of radiation but that went away quickly.  I've only had to deal with "cording" in my arm. They say older, heavier women get lymphedema and younger, more active women get cording. The physical therapist told me before I left for Jackson Hole that I should wear the lymphedema sleeve and glove both while traveling and while doing any rigorous exercise.  Bullshit I said.  That was an old "rule" suggested by the National Lymphedema network.  The new rules are actually now called "guidelines" since they now agree that everyone is different and not everyone will have a reaction to certain situations.

I love my lymphatic drainage massage therapist Lisa. She told me that I should feel free to test out breaking a rule (like jacuzzi's or massages or lifting weights) gradually to see if I have any reaction.  She said the body will give you feedback and then you'll know what you can and can't do. Anyway, there I was in the hot sun up Westridge looking at my swollen hand. After hyperventilating a bit thinking that my arm would start to swell up like an elephant's leg I took a few deep breaths and calmed myself.  I sat on the curb and gathered myself and my thoughts.  Then I wet my finger and squeezed off my wedding ring.  Then I noticed that my other hand was swollen too.  Ahhhhh. It had nothing to do with lymphedema.  It was probably a reaction to the heat.  I'm going to continue training and just be very cautious about pushing my limits. I can't imagine having to wear that sleeve and glove while working out.  Sheesh. That would really dampen my style.

Saturday I went to ballet!  What a glorious morning.  I am still terrible at it but I love it. It is the most difficult work out. If you do ballet CORRECTLY it is the most challenging activity you can do. I actually did well when we came to center to dance this time. Holy cow. I'm improving every day.

Sunday I decided to do a longer walk.  I walked 6 miles and then a ton more at the farmer's market and at the beach with Abby for a total of 9.5 miles yesterday.  I had to take a NAP.  I was exhausted.  Part of it I'm sure are the 5-FU chemo pills.  I just don't care.  I want to do this. I want to push myself. There are other benefits of the push to exercise as well...I am building my endurance and energy to be able to be with the kids. I don't need to take naps (unless I've done a ton of walking or exercise) and the I'm getting back to my fighting weight and shape.  The LBs are just melting off.

In other news. I have some BIG news.  My walker coordinator at Avon was inspired by my story and shared it with her team. I have been asked to be a speaker at the walk!! I am the ONLY survivor speaking at the Closing ceremonies.  There are only FIVE speakers total...this is HUGE. What an unbelievable honor.  I had my interview with the Event Producer last week and he is going to script my speech for me. How fancy nancy.  Then I got a call today from the Avon Foundation PR team and they wanted to know if I would feel comfortable sharing my story with reporters and TV crews prior to and at the walk.  Of course!!  I am not ashamed in any way to have this disease. I am not ashamed to share the details of this process and no one else diagnosed with cancer should be either.

I am very, very excited.  We'll rent a house on Carpenteria state beach and bring the whole family up.  I want to take the train with Abby.  Oh how fun and special this will be!!

Thank you all for your support!
Lots of love,
Jess




Monday, August 22, 2011

Fill in the blanks...

A fun word game for mothers of toddlers.  These are phrases I only THINK in my head but do not dare say out loud for fear I get arrested or called about to child protective services...

Thought: "It stinks like ____ in this ____ room.  Did you _____ in your ____ diaper or what??!?"
Actually:  "Ohhh, do you have poo poo in your diaper sweetie? Can mommy change it?"

Thought: "No I will not ____ rock you one more ____ second. Now go the _____ to sleep already!"
Actually: "Five more minutes of rocking baby, and THAT'S it..."

Thought: "Did you just _____ pinch my leg? You little _____, you just pinched my ______ leg!"
Actually: "Honey, what's the rule about our hands? They are for clapping and saying "hi", right?"

Thought: "OMG, I want to vomit in my mouth, this is the biggest, most disgusting, rancid, foul, horrific _____ diarrhea diaper I have ever changed in my life!"
Actually: "Oh no, let's put on some extra desitin, your poo poo is giving you a rash!"

Thought: "When will this day ever _____ end?! It's only 2:30..."
Actually: "Okay, who wants to watch a movie and have popcorn while mommy rests?"

Thought: "Is she refusing the take her ____ nap? Oh ___! What the ____ am I going to do now?!?"
Actually: "Sweetie, we'll get to go to the park after your nap.  If you don't take one we can't go."

In other, less hysterical, news, I got the Zomeda infusion Friday (ugh, HATED it since I had to have an IV and sit there in the Chemo chair just like in the "old" days as a full-on cancer patient except this time I was ALONE waiting for the time to pass and trying desperately not to go to those dark thoughts I used to have sitting in those chairs not too long ago).  Well, the drug knocked me on my ____.  I had flu like shivering and bone sensitivity for two days straight and all I could do was sleep (this meant a boring weekend).  Today I'm feeling a bit better but it was really annoying.  Lupron (the estrogen suppressor) causes bone loss and eventually osteoperosis. So to counteract that I got a shot of Zomeda which helps maintain bone density.  That makes my drugs total 1) Lupron; 2) Xeloda (low-dose Chemo pills of 5-FU); 3) Lexapro; 4) Trazedone and now 5) Zomeda (once every six months while on Lupron). Plus in SIX months when I am done with the Xeloda (oh yeah, found that out Friday and I am sincerely depressed about the length but what can I do if the pills can help save my life?) I have to go on Tamoxifen.

I am seriously thinking about whether or not to just go ahead and have a full hysterectomy.  NOT TAKING THAT LIGHTLY. We already know that Dr. McAndrew basically said no more pregnancies for me. It is so incredibly difficult when someone tells you NO even if you had come to the conclusion already on your own.  Taking away an option is never fun unless you can rule it out on your own. Now you see, if I do the procedure then I am permanently in menopause BUT I can't do hormone replacement therapy.  I'll write more on this another time when my teeth don't hurt from this _____ stupid Zomeda infusion.  Oh and my ____ back is killing me. I don't know if that is from sleeping wrong the whole weekend on my bed or from the ____ infusion.  Just _____ lovely.






Tuesday, August 16, 2011

JLTD Baby...

Two days ago while sitting in the jacuzzi at the Amangani (am now currently OBSESSED with any and all things Aman Resort related) a kid was talking to another kid (I say that loosely because he was probably early twenties but since I am now MID-thirties I can rightfully say that) about taking a break from his summer job and as he gestured out towards the majestic view said "JLTD Baby...JLTD". As in "Just Living The Dream"...and I had to bite my lip to keep from bellowing with laughter.  But I have to agree with the kid. I was definitely living the dream on our Jackson Hole vacation.

What a fabulous trip we had. Just in passing, we approached the weekend with a "why not" and "when in Rome" attitude.  We stayed at the most amazing resort in the most amazing town.  I feel completely disgusted with myself for being a spoiled brat when I say the following statement...we went to lunch at the Four Seasons in Teton Village to check out the competition and sped away as fast as we could afterwards to get back to the Amangani.  Best service we have ever experienced.  I cannot wait to go to the Amangiri in the fall.  (I'm sure David is cringing at that statement since he saw the bill at check out but...even he was blown away by the whole experience).

As part of our "why not" attitude we did several long hikes to see the sights and the views, 90 minute massages in the spa (If you ever go you must request "Dayva" - best massage ever and I'm not just saying "best" like I have turret's or something), relaxed in the jacuzzi outside with a view overlooking the Grand Tetons each evening with a glass of wine, ferried across Jenny Lake for a hike, rode horses each day, visited Kelly Warm Springs and the Gros Ventre "Landslide" (you could skip that), and had wonderful food the whole time.  The restaurant at the Amangani was so good that we cancelled our reservation in town at Il Villagio Osteria to dine at the resort another night (they had a vegetarian menu that was unbelievable). As far as restaurants go we did enjoy "The Kitchen" too!  So all that being said, we were living the dream and THEN the Weekend Wall Street Journal had an article on Jackson Hole and then we just HAD to add a few more to-do's on our list.  The next day we paraglided in the morning and then white water rafted down the Snake River.  UNBELIEVABLE!!!

Here is a quick flip video that David shot of me as I did some "tricks" in the glider. The funniest part is David's commentary. David, who I am very proud of for going at all since he gets motion sickness, saw what I was doing and then decided he should try it too.  He did one rocking motion though and then decided to just slowly glide back down instead.  He says "Holy crap, what is she doing...look at that...WOW." Anyway, I loved it. But I'm kind of a dare devil.  Especially with my new "why not" attitude!  You only live once my friends so make it work and make it count.  Do what you love and try anything once.


After paragliding David couldn't eat.  I scarfed down some breakfast then we headed over to do our white water rafting expedition.  We were in an "8 man boat" with just the instructor and three of us. That means way more work for the three of us.  Our guide Josh was a lot of fun...he kept telling us all the things we had to do if we fell in or the boat turned over, etc. etc. in a whole list of things that could potentially go wrong.  Long story short, we were doing great then we crossed the "Big Kahuna" rapid and he almost fell out of the boat. Here's the frames in order so you can see for yourself.  We were busy paddling so we didn't even notice that he was tossed up out of his seat and slammed face first into the boat.  Hilarious.  OMG. He barely got himself and his oars back into position before we crossed the second largest rapid.  Grilled Cheesus that was close.  After all that I "rode the bull" where I sat at the tip of the boat, held onto a rope and "rode" the rapids and waves like one would a bull.  The woman in the other party fell backward into the boat after two waves.  I'll toot my own horn by saying I rode it for about seven or eight full waves. I am now a professional thrill seeker - NOT!!!


We had such an awesome time creating new memories and reconnecting with each other.  We both couldn't wait to get back and see the kids though.  Home sweet home.

In other news, I wore my lymphedema sleeve and glove on the flight and NO swelling to report after traveling.  I was nervous it would react. I was also nervous that it would react to so much strenuous activity but my arm is doing great.  Once again, I would like to honor my body and its miraculous strength and vigor.  I am tired and sore but I love that feeling.  To know that I was able to do such active things after such a crazy ordeal makes me very happy and very hopeful for the future.  Guess I'll be able to ski this season...

Thursday, August 11, 2011

General Manager of the Universe

Did a ton of dental work today. Full mouth x-rays. Full exam. Guess what pregancy caused - TMJ and bite shifts that are causing me to clench and get lock jaw. Lovely. Also need to add some composite to a molar with root exposure. That meant running errands afterwards with my face half frozen and numb. I am not joking.


I'm up way past my bedtime. Paying bills and stuff. Getting ducks in a row again...that kind of thing.  It makes me feel good when I can cross things off my list. Check. Check. Check.

It's funny, Louise Hay says she enjoys paying her bills. That she kisses each bill as she seals the envelope.  She feels good that she has the means to pay those bills and she is grateful that companies/people give her the ability and credit to pay on terms. At first I thought she was looney. But now there is a lot of truth in what she says. So pay your bills and be happy.

Oh, but man oh man, do not look at your retirement account right now. Or if you believe in dollar cost averaging then buy, buy, buy. See if you need to diversify your portfolio and pick off some equities on the cheap. 

The markets, the LA riots in London, the assasination of heroic soldiers, school massacres, tsunamis, global warming, and more and more and more. There is much to make us feel very ANXIOUS. There is a lesson for all of us to learn regardless of being ill or not. How does worrying about something that hasn't happened yet help anything?  (I'm talking to you Grandma!).  It's fine to PREPARE for the worst and HOPE for the best but don't dwell on it anymore than you have to.

Here are a few of my favorite quotes about worry, anxiety and fear.
  1. Do not put off for tomorrow what you can do today.
  2. Today is the tomorrow we worried about yesterday.
  3. Cross that bridge when you come to it.
  4. Do not anticipate trouble or worry about what may never happen. Keep in the sunlight. ~Benjamin Franklin
  5. Troubles are a lot like people - they grow bigger if you nurse them.
  6. Every evening I turn my worries over to God. He's going to be up all night anyway. ~Mary C. Crowley
  7. He who fears he shall suffer, already suffers what he fears. ~Montaigne
  8. For peace of mind, resign as general manager of the universe. (MY PERSONAL FAVORITE)
Anyway, I happened to catch up on the motherswithcancer blog and there was a lovely post from "mommy doctor" in response to a woman posting about ANXIETY. I loved her response. I didn't know the medical aspect of sleep and anxiety, how we are more vulnerable to our thoughts at night. Hmmmmm. 
Dear Judy,
Since my diagnosis, I’ve worked hard to learn how to deal with the losses and heightened sense of vulnerability and uncertainty.
After a few years of living in and out of cancer treatment, I was able to do a pretty good job of focusing on all that was right in my life, keeping at bay all my anxieties, fears, sadness — during the day.
It was a completely different story at night, during the transition to sleep. All the fears and sadness would resurface in the dark, quiet of the night as I relaxed to fall asleep.
I understood this to be due to the loss of all the distractions and busy-ness of the day.
Also, the brain works differently when falling asleep, leaving us more vulnerable to experiencing feelings we keep at bay using our “higher” cognitive brain during the day.
One thing that may help is, before turning out the light, reading or saying mantras that calm you or gave you courage. Another is writing in a “joy journal” in which you record whatever made you smile or laugh that day.
Lastly, I realized that sometimes I needed to feel the horrible feelings, at least for a while. Only by feeling them could I begin to adjust and grow stronger.
Luckily for me, I didn’t have to endure the unpleasant (sometimes, downright painful) feelings in a lonely corner by myself. I have been blessed with a loving husband and loving friends who told me to call them, if I’m going through a rough spot. At midnight, I rarely did. But knowing I could somehow calmed me and gave me strength.
This blog is here for you 24/7.
Sending you wishes of calm and fortitude.
With hope,
Wendy

All that being said, I have decided to resign my position as General Manager of the Universe.   Time to enjoy more of being present in the MOMENT.

Pleasant dreams everyone.

Tuesday, August 9, 2011

Doing the Walk!

SOME UPDATES:
1) Still tired but making the time to walk everyday (um, except today I didn't because I went to physical therapy for the cording in my arm instead...)
2) The walking and hiking takes time that I could either be a) be with the kids or b) be resting my body.
3) Have decided to try to incorporate one kid or the other into the walking. Abby isn't so great at sitting in the stroller still, even with Rio playing on her portable DVD player...she wants to get out and walk towards the end. (Um, not great).  Leo on the other hand. Perfect walking partner. SHHHHHH, don't tell Abby I said that or I'm in HUGE trouble!!!  She is still pretty jealous where Leo is concerned.
4) I listened to the message from my oncologist's office randomly and realized that I was supposed to be taking 2000 mg of Xeloda not the 1000 mg per day like I was taking during radiation.  Crap. I called McAndrew's office and confirmed that was the case.  That freaked me out twofold - a) how the heck am I going to feel on 2000 mg a day (that's 2 pills 2x per day, morning and evening) and b) would me not having taken them correctly effect my results.  UGH.  Anyway, I'm still off for the next seven days but then I restart again to take the 2000 mg for 14 days again.
5) Have to go get my stupid lupron shot tomorrow.
6) I have noticed that the chemo pills seem to be effecting two things a) my teeth (gums bleeding easily like they do when I'm pregnant and we all know I'm not pregnant since it isn't possible when my ovaries are being ablated into oblivion and b) my bones (I could be imagining it but my bones seem a little more fragile, like if I accidentally step on my ankle funny it doesn't seem to support my body like it use to). I'll have to talk to McAndrew about this all when I see her on the 19th.  I am supposed to get clearance for the Zomeda shot (shot to help my bones) but they keep delaying it. WTH?
7) Icky hot flashes at night. Yippee for me!
8) Hollywood Bowl Thursday night then early Friday morning flight to Jackson Hole and the Amangani. Very excited to take this well deserved "time out"... Next month the Amangiri. Woo hoo!
9)  I've started my fundraising for the Avon Walk.  I am so amazed by all the support. There are those that are supporting me financially and those that are actually walking with me. I am thrilled!! (and nervous).  THANK YOU EVERYONE!!!
10) I need a team name for the walk. Please post your team names in comments. Here's a few I've heard so far - you'll see why I need some major help here!!!

  • walkers for knockers (this is taken though - darn it!!!)
  • got mammaries?
  • rack n' roll
  • titty trust
  • ta-ta triage
  • bosom buddies
  • breast friends
  • finish or "bust"


Finally, here is my fundraising email:
Dear Friends and Loved Ones,
I have rightfully “slacked off”.  But now…I need your help. 
I have committed to raise major clams for the Avon Walk for Breast Cancer. 
First I said I was doing it -  then I said I wasn’t…because I was “TOO TIRED” from fighting cancer. 
Well that’s a quitter’s attitude and I’m NO quitter.
I am going to walk as much as I can of the 26.2 miles and be proud and honored that I am ABLE to do so. 
To quote racing enthusiast John Bingham - "The miracle isn't that I finished. The miracle is that I had the courage to start."
Please click on the link below to help the cause. 
Generous contributions seriously welcome. But $20 is helpful too.
Forwarding this email is very much encouraged and appreciated.
Thanks to those of you who have already contributed!
Much love,
Jess
Jess’ Avon Walk Page - Donate Now

General Information  - www.avonwalk.org
 
Here's the info from my walk page:

I'M WALKING TO PUT A FORK IN IT!!!

I'm flying by the seat of my pants. I haven't trained. I've just finished radiation. I'm still taking 5-FU chemo pills...but I'm almost done with the hard parts. I'm getting close to finishing my "year of hell" in killing this disease. I want to walk to celebrate the end of my treatment but I also want to walk for all the women before me who have been trail blazers and courageous warriors. Like Sharon and Annie. And for all the women who are going to be diagnosed with this dreaded disease. 
Breast cancer is a big disease, one that still affects far too many people, and I'm determined to do everything I can to help put an end to it. The money I raise will be managed and disbursed by the Avon Foundation Breast Cancer Crusade to help provide access to care for those that most need it, fund educational programs, and accelerate research into new treatments and potential cures. I'll be just one of thousands of people that will walk up to a marathon and a half over a weekend, raising awareness of the cause and educating even more people. 

I can't do it without your help. Though I'm required to raise at least $1,800 in donation, I plan to raise much more, my goal is $5,000! WINNING!!!

I hope that I can count on your support.
You can make a donation to my fundraising campaign right here on the website by clicking on the pink "Donate Now" button. 

As I prepare for this exciting event, I plan to update this page frequently so that all my supporters can follow my progress, so please visit often. While you're here, you might want to spend some time on the site to find out more information on why this event is so important, and the organizations and people that will be helped by the money we all raise. 
All my love,
Jess

Important U.S. Facts About Breast Cancer

  • Approximately 178,480 women and 2,030 men will be diagnosed with breast cancer this year
  • 40,460 women and 450 men in the U.S. will die from the disease annually.
  • There are over 2 million breast cancer survivors in the U.S. who have been treated for breast cancer
  • Every 3 minutes, there is a new diagnosis of invasive breast cancer
  • There are more than 250,000 women under the age of 40 in the U.S living with breast cancer, and over 11,000 will be diagnosed this year
  • A woman has a 1 in 8 chance of developing breast cancer in her lifetime
  • Every 13 minutes, a life is lost to breast cancer
  • White, non-Hispanic women are more likely to develop breast cancer but African-American women are more likely to die from it.
  • Breast cancer is the most commonly diagnosed cancer among Hispanic women and is the leading cause of cancer deaths among this group.




Monday, August 1, 2011

Spiderman, spiderman.

I just picked up my Louise Hay book "You Can Heal Your Life" to read while waking up from my nap.  And a large brown spider fell out of it that started to crawl down my leg (thankfully I am wearing pants)... I flicked it off and squished it with the book.  Eeeeeek.  What is with me and spiders?  Seriously odd.  I feel bad killing it so violently especially with such a loving book. Oxymoron.  I killed him with a book on healing.  Poor Spidey. But I had no idea if it was a brown recluse so I wasn't taking the chance to just let him roam freely in my room.  Wonder what Louise Hay would say about that???

I've been resting. A lot.  I slept almost the whole day on Saturday.  I really needed it.  I still do not have much energy.  The energy I have is spent with the kids, of course, and then my new project of purging.  I am going through the house and organizing and purging.  If I haven't used it in the several years that we've lived here then I am probably not going to use it in the future.  My sister was here yesterday and I was telling her about the stuff I have collected over the years. Knick knacks and other things that I don't use or that used to be on tables or shelves but are instead in the garage or hidden away in cabinets or drawers...now I want the house more simple, more clean, more bare. I don't want to open a drawer and have stuff tumble out or not be able to organize the kitchen because I'm storing party supplies I'll never use. She joked and said that she expected to see me on an episode of Hoarders - Buried Alive soon...to which I laughed and told her No...I purge so I can make room for more.  There's a difference.  Ha ha ha.

That process of purging is something the feng shui expert told me to do.  You should only have things in your house that you love, that make you happy, that have special meaning to YOU.  Even if someone gave you something as a gift you shouldn't feel the need to keep it around.  The thought of that gift was very much appreciated.  Now it's time to see if you really want it or if you are just keeping it to make someone else happy in case they come over and see it.  That's not the purpose of the gift was it?  If it was then that is a gift of obligation and you don't need it!  

David and I have the Amangani booked for four days.  My first small trip away from Leo.  It is going to be a wellness trip where I ride horses every morning, spa, hike, yoga, and connect with my hubby. We also may hot air ballon and tandem paraglide.  I will miss the kids badly but I also really need to get away and reward my body for the hell it's gone through.  It's time to start a new chapter in my life.  The well chapter. Amen.

I now really want to start living my life and assembling my "bucket list"...I don't want to take any trip for granted. I want to make the most of each and every day.  While that may be exhausting, it really is the best way for me to live my life.  There is power in the present moment.  Each day I do something I can go to sleep smiling about.  That may be kissing Leo on the lips (aka making out with him!!!), blowing raspberries on Abby's tummy and recalling her girly giggle, sitting down and spending several minutes cuddling and snuggling with the dogs, oh and then maybe some time talking, laughing or cuddling with David.  Ha ha ha. Didn't mean to make him last.  It's also feeling good about sending a friend or a family member a quick message "hello" just for nothing. Or working hard in physical therapy and loving my body for being so miraculous.

Are you staying well my friends?  Are you cleaning your mental house as well as your real house?  Are you telling those close to you that you love them? Are you telling yourself that you love you?

I love you.  Thank you for being here for me.