Again

Pink Ink…

Well we all survived Thanksgiving!  It was filled with HUMOR, as I requested.  There were no sad eyes, or bouts of hysteria.  There were very few discussions of “next steps” etc. The weather was beautiful, the food was good, and my Bs were “loved on” all weekend.  The only mini disaster was when Queen Latifah’s “The Last Holiday” movie came on while I was napping.  The story is about a woman who learns she only has a few weeks to live.  When Lil B’s cousin turned it on, Queen was just learning that she was going to die. I was awakened by the sobs of my daughter!  I was like “What the…”.  Lil B’s 6-year-old cousin was very concerned and explained the woman doesn’t die because the doctors are wrong.  As you can imagine, Lil B didn’t care, and ran to the back room.  I managed to calm her down with lots of hugs and kisses!  Disaster averted!  Weekend saved!

Black Friday was unexpectedly spent at Mayo investigating the swelling in my right boob.   I was very scared that I would have to have another surgery, or that my chemo would be delayed because of…whatever was going on in there!  Fortunately, they believe the fluid will just reabsorb.   I was told to take some Motrin for the pain, and we would check back in, in a week.

So here we are.  Some facts.

I started chemo one year and 7 weeks ago.

Nine months ago, I stopped chemo the 2nd time.

I went 5 months between treatment for breast cancer and starting treatment for metastatic breast cancer of the lung.

Longest I have gone without a visit to Mayo…3 weeks.

Wow.

I am so scared to start chemo again.  Not because of what it means, but because of what it does to me and to my family.  I feel really good right now! My body feels good.  But I know in 24 hours I will barely remember that feeling.  That makes me sad.  Someone told me that I have to look at my life as LIVING with a chronic illness.  So that is what I plan to do.  Keep living.

I decided that my next Instagram project is to chronicle the “getting healthy” part of chemo.  I have the lofty goal of doing at least 30 minutes of activity, Monday through Friday for the next 2 months of chemo.  If this chemo is ANYTHING like the last, this will be a very difficult assignment.  But, I have enlisted friends to come by each day and hold me to it.  I apologize in advance to each of them. I am sure there will be a few days when I will look and smell awful from the chemicals.  Plus, my attitude may stink!  But, I am determined.  I can’t let this disease quickly win!  I need to stay active and keep my lungs working!

So, I have broken out my chemo bag and packed it up with my chemo “stuff”.  I got my nails and toes done and topped it off with a short massage, to help me get my mind right.

Chemo pedi!

Here we go.

Time for me to get back at it…Again!

From the sidelines . . .

red ink…

I’m sure that a lot of you watched your share of football this Thanksgiving weekend. Last night while watching the USC vs. Notre Dame contest with my husband, I noticed more than usual whenever the cameras focused on the sidelines, to show the coaches and the other players cheering on those in the game. I’ve cheered from the sidelines before as a cheerleader in high school or more recently as a mom cheering for my son in swimming or watching my daughter run track, but this situation feels more like football. Those outside of the action during last night’s game were members of the team to be sure, but they were not facing an immediate hit, and were steps removed. That’s kind of how it feels to be me (and probably more than a few of you) right now in Barb’s life – a close friend living far away with family obligations that won’t allow me to travel (namely school aged children, one with a variety of health challenges) on a moments notice. Most days, I accept that I can’t do more of the things that she really needs right now, but resolve to keep doing something – whatever I can, from here. Like Big B, I was focused last time on getting this behind us, but this time, we’re facing a road with an end that feels more uncertain. I work hard, and pray hard not to let sadness envelope me, especially when I feel like I don’t have a useful role to play. I’m reminded of an episode of Parenthood, when Christine announced that she had cancer, and everyone in the family, wanted to do something “important” because it would prove how close or how necessary they were to her recovery. I am so very clear that I’m NOT even close to the most important character in this drama, but our blog is supposed to help cancer survivors and their families and friends, so I describe my feelings with only a bit of hesitation that others will take it the wrong way. I write this post on the eve of Pink Ink’s first chemo appointment this time to acknowledge that its not easy being on the sidelines, and that I know that family and other friends can relate to this. You feel useless and unsure of what to do that might be helpful. She know’s I’m here, and no doubt that having a cheering section matters, but I just wish there were more that I could do . . . I can’t and it’s hard. Those of us here can support each other and remember that we need to send our energy and good vibes to the star player.

Go for the goal, pink ink!

Something to be Thankful For

Red ink returns…

So if you’ve been following our blog, you know that the last few weeks have been pretty rough.   Unlike Barb, I retreated from writing mostly because I had no words, or should I say no “publishable” words. Big B and I touched base just before he had his talk with Lil B, and he shared that he honestly didn’t know what he was going to say because “he has no script for this.”  My sentiments, exactly.

Big B called to tell me “the news” early on a Saturday morning – too early Phoenix time – so I knew the news was not good. I missed his call and returned it after dropping off my son for a school activity when I was by myself. I pulled over and dialed him. As he shared the news, his heartbreak came through with every word and as my own heart was breaking for my friend, her family, and myself, I did my best to hold it together for him while I was on the phone. I hung up, and just sobbed…

The kaleidoscope of emotions that took over after that phone call ranged from stunned silent, to unimaginably sad, to impotent, to fiercely angry. I think more than anything I was angry and found myself asking the same questions of God that Lil B asked of me after she talked with her dad – Why? Why this one? Why my friend, Lil B’s mom, Big B’s best friend … didn’t we know people who conquered this disease?  Pink ink found it early and did everything right … It’s just not fair …

I wanted more than anything to run (just being outside in the air helps), and the next morning did just that thanks to my husband who didn’t quite know what to say (again, no script) but who has known this kind of hurt and knew that I needed to do something. So I ran and cried, and cried some more.

She wasn’t ready to talk yet, so I filled the void by shopping for things that I thought might be useful during the next round of chemo (like warm socks, and moisturizing, no scent soap), sending cards, and trying to keep my mind from going there.

We finally talked, and laughed and cried after a day or so.   Our talk about ordinary things was interspersed with the unimaginable.  It was/ it is surreal.   But we keep talking,  stealing moments when husbands are at work and children are at school, to go on sharing the highlights (and lowlights) of our days, with a new appreciation for the “specialness” of those moments.

Like the Rileys, the Richardsons spent Thanksgiving with family that we haven’t often (like not in many, many, years) spent this (or any other) holidays with, and there was excitement and some nerves on our end as we approached our respective big turkey feasts.   During our pre-holiday check-in, through all the hustle and bustle of getting ready, Barb and I realized that the family celebrations were something to be grateful for – for our children, our husbands, and for ourselves.   We both needed time out of our own nuclear family cocoons, to allow each of us to tap into that broader safety net of support that will be so necessary to sustain us and our children in the days ahead.    The chance to have a traditional Thanksgiving complete with family and football games seemed to hold the promise of very special memories that neither of us would take for granted this year.

My thinking over these weeks has miraculously evolved from mostly angry to more grateful, realizing that each day given is special, and is a chance to make great memories.  It still seems so unimaginable, but each day that we talk, and laugh, and share stories, and support  is truly something to be thankful for . . .  

 

Find the humor

Pink Ink…

 

Happy Thanksgiving!

Last year, I barely managed to pull myself to the Thanksgiving table.  Yet, we managed to find some humor in the day.  (Ironically, I will be thankful for ZOPHRAN, again this year!! Maybe I should be thankful for the scientist who discovered that it is a cure for nausea!) That’s what it is all about.  Finding something to laugh about when all else looks dark.

This Thanksgiving I am surrounded by all of Big B’s family. That is a miracle in itself, as it has never happened in 17 years of marriage! Yes, there will be drinks! Ha! Usually, it’s babies that bring families together.  But…well…you know.  Sometimes, it’s other things.  Suffice it to say that my family is rallying and coming at Christmas.  My cousin is even flying in from Peru!  Trust that I hope, pray and believe that we will have many more holidays together.  But it brings me joy to see Lil B surrounded by the love of cousins she has only met once before at a funeral!

Cousins on Thanksgiving Day!

Thank you to ALL who are sending prayers, cards, emails, texts, jokes, pictures, gifts, etc.  While I may not respond to each of you, please know that  you are all appreciated on this day and everyday!  

So when you are stuffed, the dishes are piled in the sink, the football games have come and gone, and you are officially sick of  ALL of your relatives, remember to…find the humor!

An Expiration Date

Pink Ink…

Quick update.  It has been a helluva 2 weeks!  That’s the nicest thing I can say about this time.  Big B and I have been in a daze.  We have cried more than we have ever cried.  I think I can now officially write or talk about every possible experience of having Breast Cancer!  Now I know what it is like to hear that cancer is in your blood and there is really nothing to do except manage quality of life.  I could write about this all day, but I won’t.  Here is the abridged version. (forgive spelling/grammar errors!)

Thoughts that have consumed me:

  • Most women live 1-3 years with this diagnosis.
  • What about my baby girl?
  • Big B and I have so much more to do! I can’t leave him! WHAT ABOUT HIM?
  • Will this kill my parents?
  • WHAT ABOUT MY BABY GIRl?

I could go on and on!  For a week, we thought about “lost dreams”, “lost experiences”.  For a week we didn’t sleep.  For almost 2 weeks we haven’t answered the phone. I have cried and cried for my B’s. Through all this, we had to keep a brave face for lil B because we didn’t know how to tell her. We didn’t know our plan.  So we would cry after she went to school or bed.  I would cry the few times I would talk on the phone.  But when she walked through the door, Big Girl Panties would be pulled up high! Off to a play date! Off to watch U of Michigan versus Northwestern! Off to an election night party!

Pres. Obama wins 2nd term!

But my baby is no dummy. She asked what was going on.  She said we were acting “different”.  Why the “hushed” phone calls with Mayo?

Again, I could go on and on.  But I am crying now as I write.  And frankly, I have stuff to do today.

The last 2 weeks have been about “planning”.  It was me talking to Michele and Carla about the “lessons” I need to teach while I am here.  It was me planning out videos so my Bs will be able to hear my voice and “see” me after I am gone.  One day had me in my closet cleaning out drawers because I don’t want Michele and Carla to have to go through my closet after I am gone. (That was short lived! I have way too much stuff! So that will be a long term project of purging! Ha!) It was me asking B if there was one thing that he really wanted to do or a place he wanted to see WITH ME, while I still could enjoy it.  My heart is heavy.

Treatment:

Chemo starts Monday.  CHEMO AGAIN!  We thought I would be able to participate in a trial instead of chemo.  Alas, I can’t…because I am TOO YOUNG! Seriously?  Again, you couldn’t script this! The goal is to just keep shrinking these dots until my body gives up.  Fortunately, they are not near my bronchial tubes. So as long as I don’t get sick, or the chemo doesn’t fell me, I should be ok….until the next time.  Actually, knowing that I’m starting chemo gives us something else to think about, to focus on.  I am trying to accept that I will have to get a port again.  It will be in for the rest of my life.

Big B told Lil B this weekend. Tears.

She is devastated and MAD. I can’t write about this right now, because I am wracked with pain.  But to give you a sense…she would not look at me when I came home after she found out.  She said it was “too much”.  Later, she asked me when I was going to die.  My. Heart. Broke.

Thank you for all the calls, texts, emails, and tweets.  To the folks who haven’t reached out…again. You are free.  I have released you.  This is my time to focus on my family, to focus on me.

To all who love me, I have NOT given up. We fight.  Maybe the “My life is a LIFETIME movie”, experience will work in my favor, and I will be here years from now. Thank you for the stories of REAL PEOPLE who have lived 10-15 years after terminal diagnosis.  It has given me an ounce of hope.  That is all I have.

B has begged me not to give up.  He says it’s not time yet.  I WANT to LAUGH as well as cry.  I WANT to live a comfortable life, as long as I can.  I will continue to talk, to educate.  I owe that to both my Bs, and to all the people who can learn from my Life in the Cancer Lane!

I power on.

As Red Ink reminded me yesterday during one of our cry fests, I don’t have…an expiration date!

Of Fighting

Pink Ink…

“This is a time of compassion and a time of healing.  I go within and connect with that part of myself that knows how to heal.  It is possible.  I know that I am in the process of healing.  During this time, I discover my healing abilities-abilities that are strong and powerful. I am incredibly capable.  I am willing to go to a new level to truly heal myself on all possible levels.   I am spirit.  And being spirit, I am free to help myself-and the world”-Louise Hay

This is the meditation I am now saying.  Life just got real…again.

Here’s the quick and dirty.  My breast cancer has “metastasized” in my lungs.  This means that the cancer has spread from its original spot into another place in the body.  Although some types of metastatic cancers can be cured, most cannot.

Big B and I got the news late Friday night.  Needless to say we are devastated and in shock.  I guess this is what most people go through when they get their initial diagnosis.  So now I know what it feels like to contemplate the very real possibility that I won’t see my daughter off to college.  The very real possibility of B being a widower.  Not a good weekend.  I have never clung to my husband harder and longer than I did Friday.

But you know me.  BIG GIRL PANTIES!

Saturday, after no sleep, Lil B and I had mommy-daughter day.  I took her to get her hair done, then went bra shopping…for both of us!! Then we had lunch, followed by her putting make up on me! Good times!  Later that night, the 3 of us went to the movies. Trust me, it was tough!  During the day I would steal away to briefly cry. To mourn.  I cried freely under the cover of “Wreck it Ralph”, the movie!  While I haven’t been sleeping, I have spent a lot of time thinking about all the things I have to teach her! So Sunday morning she learned to make pancakes by herself.  It was a little messy, but they tasted good. Next up? Omelets! She has now been charged with cooking breakfast for us over Thanksgiving!  Later, we went to the AZ State Fair.

High atop the ferris wheel!

This was a big deal because last year I missed it due to chemo.  While I didn’t want to go this year, I did.  Because I had to.

This is shocking to everyone.

WE HAVE NOT TOLD LIL B.

 

Again, WE HAVE NOT TOLD LIL B. 

So please, if you call, please don’t refer to it in detail.  We will share once we figure out our plan.  Fortunately, I am feeling good. I don’t look or feel sick.  I don’t want to spend my days wondering if this cough or that bruise is because I am dying.  I have too much to do before then.  I have to believe that this is part of God’s plan.  I have to keep spreading “the word”!

Thank you in advance for your love, support and prayers!  We need it all, and then some.  If I don’t take your call, don’t take it personally.  (Seems like I’ve said that MANY times before! LOL) The blog will continue. Ironically, we started the blog in November 2011.  Lately, I had been thinking how it would continue. What stories would we tell? Funny how things happen.

Reminder: Don’t check Facebook for updates! Not going to happen! Lol

B and I need to focus on our family.  I need to focus on filling up my husband and daughter with all the love and information I have to give.  I need to continue creating great memories for them.  I am so thankful that Big B and I had the opportunity to renew our vows this year, surrounded by love. I will always treasure that, and hope Big and Lil B will also.

B said he’d hang around awhile longer!

I am indeed tired already of the tests, and prodding from treatment.  I am indeed already tired of crying.  I am indeed tired of being the poster girl for “Things that can happen”.  I am indeed tired of people crying for me.  I am indeed…TIRED!

But I am NOT tired…of fighting.

What did YOU do?

Pink Ink…

 
Breast Cancer Awareness Month is officially over! What did you do? Did you wear pink? Did you walk a Race? Buy a product? Get a mammogram? Nothing? One of the things I did was “PinkItOut” for 31 days. Yes, I wore pink for 31 days!


Some people said, “We get it. You had breast cancer. “ Others said “Oh, that’s cute.” But no one asked me “Why?” Yes, I am a Survivor and yes, pink IS cute. But that’s not why I did it. This past February, Star Jones inspired me. You see, she wore red for a month as a way to promote heart health after she had heart surgery. “I learned late in life that my heart health is my greatest asset.” she said when asked why it was important to her. Each day that she wore red, it prompted someone to ask her about it, or comment on it. She used her celebrity for good! As an American Heart Association Ambassador, I knew about National Wear Red Day. But I loved that her simple act of wearing red created dialog!


Could I do the same thing? Given that none of my friends asked me why I was rocking pink for a month, one could argue that I was not effective. After all, I am no celebrity. My friends checked Instagram just to see if I could keep it up. Again, they thought, “Ok, we get it! You have breast cancer! “ But even if no one “got it”, I “got it”. I know breast health is a lifestyle, not just a month. Choosing something pink EVERY DAY, forced me to take action. The small action of choosing something pink, led me to think about breast health and awareness the moment I got up! The small step of choosing pink motivated me each and every day to think, talk, tweet, and write about breast health. (For all 31 days, check out “pinkwellchick” on Instagram!)


Am I glad I am done wearing pink for a few days? Yes! (I’m headed to Mayo in sweats!) But I am even stronger in my belief that breast health is more than a month. It is a…lifestyle!

 
What did YOU do?