Starting Chemo in December 2013

kimie - you are so rocking that look!! You look gorgeous. 

Hey Mary!! We are in week 3 of homeschool. Trying to get in a routine. Finding it a little tricky with doctors appointments and such. My oldest is 4th grade this year. We are introducing a lot if new material and trying to play catch up from last year since chemo and such slowed us down some. My personal email is holli94@msn.com     Feel free to email me anytime if you want an ear to bend :0).  In regards to your mammo question- I would think it would be covered more often than yearly. 

Is it ok to copy and paste my blog post here? It's easier to update y'all if I do it that way. I have a positive post and a pity party one :0)

Holli

Kimie, you rock the short hair.  I love it! I'm definitely keeping mine short short too.  I went to the barber last week to get it cleaned up.  It cost me a whole $15 and only took 15 minutes.  Awesome!

Hi girls.  I had my 6 month check up with the oncologist Monday.  Everything was great.  She wants to see me in 4 months.  I didn't realize how much it would affect me emotionally.  I have had several nightmares since that the cancer is back.  She was telling me with TNBC we just don't have any idea what will happen.  She said if it was going to come back, we would know soon.  (within 2 years.)  If we got it all, it should never come back.  She also was gently telling me to lose some weight as we know that helps.  I gained 20 while in treatment and since have lost only 5.  Whatever is going to happen will, I'm just trying to be happy every minute of every day.  I am still in a good mood which is amazing.  I thought for sure, that after a few weeks of being home from Aruba it would be back to my mood swings, but thankfully not.  Have an amazing day !!!!  Kathy.

Michelle you look beautiful! Sorry to hear you're having discomfort. It is quite the pain in the boob.

super cute Michelle!!

I long to go to a 6 month follow up. It seems I'm seeing either an RO or MO every other week. Next week I follow up with both in one day!! LOL

Chico - low country boil. What do you put in it?  Sounds yummy!! That's what they serve in my favorite movie of all time!! 

Have you zip lined before!! So awesome. Wear longish pants. Those harnesses aren't the most flattering!!

Chico- that sounds line a blast. I'm afraid of heights too!! But you just got to make it past that first one. I did it on out LPHOH retreat. My very first time. My husband and 9 year old also zipped. With my radiation pneumonitis I had trouble and got real weak and ready to quit by the second zip but everyone encouraged me and supported me. Through tears I finished the course. I was so proud of myself. It truly gives you such a sense of empowerment!! And your right... Making it through Chemo gives you a whole new type of courage. 

Have a wonderful birthday!!!!!!!!! Can't wait to hear all about it!!!!

Missy, I love your hair.  So cute.

Holli, my parents used to live in Corpus Christi.  There is a place called the Boiling Pot in Rockport TX.  We loved that place!  I think they opened another location in Austin but in the meantime that might have closed.  Anyway, it's cajun but sounds kinda like your low country boil to me!

When I saw MO last week, I asked her about scheduling my next mammogram & told her that my 6month followup on my left breast was due.  She was like, what?!!  What do you mean that the left is on 6 month watch still?  That's ridiculous!  You should not be on a continual 6 month watch.  If there is any doubt you should get a biopsy!  You can't go on indefinitely with a "watch"!  

Turns out, my FU left mammogram was never sent to her.  (Despite the fact that all of my providers are Johns Hopkins it turns out not to be seamless at all).  I made the same exact arguments back in the spring pre-surgery!  I thought it was crazy to keep "watching."  But then I was having these conversations with my surgeon and radiologist.

Anyway, the good news is that MO has now ordered a bilateral diagnostic mammogram for November.  She is now advocating that either we decide that it's A-OK and I go to yearly bilateral mammos or if not, I get a biopsy on the left.  No more of the lets-see-in-six-months crap.  Just wish this could have happened back in May . . .

I generally feel like I'm in an in between place.  Friends are continually asking me if I'm "done".  I usually answer, "done with the hard stuff" but that doesn't exactly feel right either.  I still get an infusion every 3 weeks, having an echocardiogram next week, have a lot follow ups coming up, still have my port in.  And because I'm now wigless, I'm getting a new round of people realizing that I've been sick.  (Amazingly, a lot of people didn't realize the wig was fake!!!).  My hair is so short that it's doesn't just look like I decided for a pixie do, I guess.  It's weird to explain what's going on now when I feel in this in-between place.

ummm negative those are NOT my lashes..... wish they were my lashes...haha, I am going tomorrow to get my little do cut and colored !! Im thinking platinum.  or at least really blonde, then I am going to get my nose re-pierced which I had before the BC but I it took ut.  

I am now down 28.8lbs and 45" so close to 30 ! I will hit it next week   I feel great and had to go buy a bunch of new clothes, I sold my other ones, I had no plans on wearing them again.  

I was thinking rads was the cause of my itchy pit too.  There are days its not even really there then there are others that I just want to take sandpaper to it.  

I have got some new friendships in my life, one is another BC warrior who I have been keeping in touch with I went to high school with her husband the other one I grew up with she has a very rare form of lymphoma, its in her kidneys spleen and liver. I am being as supportive as I can,  all I want to do is punch cancer in the nut sak. FAWK......... Its not right.

I love all the postings of hair and Lisa people pay big bucks for that hair you can smooth it out even with some small rollers, just even velcro ones throw a few in the top when its wet and let it dry.  

muah

Chicopeach! How fun! Happy Birthday!

Today I spoke at my medical centers BC survivor day.  What an emotional day.  My speech was successful.  I made many grown women cry and was thanked by many more for my inspiring speech.  I made it through the whole speech without crying until I talked about my ladies.  I just want to thank you again for being there for me.  I couldn't have made it through this without you.  I've pasted my speech below.  Kind of long.  Jbokland I stole the mantra you coined and used it in my speech.

Deb's speech:

A few weeks ago I was leaving a doctor’s appointment and I was walking between the Wayson and Donor Pavillions when a women stopped me and said “I love your hair, it’s so cute, where did you get it done?” I pointed over my shoulder and said “At the infusion center, but I don’t recommend them.” Humor is how I’ve made it through the last year. On November 14, 2013 I was diagnosed with breast cancer. I choose not to tell you my story today because our stories are similar. We were diagnosed with breast cancer. We felt fear, confusion, anger (lots of anger) all rolled into one big ball of mass chaos that came barreling through the middle of our lives. We had an amazing and caring medical team guiding us in our treatment. And we’re all here today because we all made the same choice…we chose to fight. What I choose to talk about today is learning and living life.

Soon after I finished chemo a friend asked me “what have you learned from this experience”.  In May I spoke at the closing ceremonies for the Avon walk for Breast Cancer in DC and I answered her with the same thing I said in my speech.“ I have learned that I am much stronger than I knew. I have learned that I am more resilient than I knew. I have learned what is important to me in life.  ”She looked at me with a straight face and said “Oh come on, everybody who knows you already knew that, what have you really learned?”

I sat there staring at her. I didn’t have an answer. After everything that I had been through all the treatments the side effects, how couldn’t I have an answer? I hadn’t come to any earth shattering knowledge about life.  Some dawning realization that would suddenly show itself to me and illuminate and enlighten my life. Shouldn’t I have an answer when somebody asks me that question? I had NOTHING! And it PISSED me off.

I’d lived a life full of adventure. I had the privilege of serving as an officer in the US Military deploying to 2 combat zones where I learned the meaning of comradery, commitment and sacrifice. I had fulfilled my lifelong dream of owning a small farm and horses and quickly learned what is meant by the saying “Be careful what you wish for, it could come true. ”I’d fallen head over heels in love and married quickly and learned what Ronald Reagan meant by the famous quote “trust but verify”. I had lost my dad and learned about grieving and sorrow. I have hit rock bottom and been dragged through the mud and I’ve pulled myself up and brushed myself off and moved ahead stronger and more determined.  I’ve already learned everything…right

That question bothered me for a while. I pushed it out of my mind and as I started to come out of my chemo fog and I my strength back and the exhaustion began to lift and I started enjoying my life again. I started noticing little things. Things that surprised me.

On a camping trip in June in the Shenandoah Mountains I snuck away from the campfire for a walk. I have always loved to watch firefly’s blinking in the darkness of the forest, but I learned that I never really saw them. When I saw the fire fly’s blinking in the mountains, hundreds and hundreds of them. I dropped to my knees and I wept at the beauty of them.  Nobody else gets to see and understand that beauty in such clarity, but you do. 

I learned to be daring.  I bought a dress three years ago that I never had the guts to wear. It’s smokin hot, low cut and it hugs every curve. I wore that dress and I liked it, so I bought another daring dress.

I went skinny dippy in an ice cold mountain stream.

I learned to surround myself with the people I enjoy, who love and appreciate me, support and encourage me. The people that bring joy to my life. Sadly, I decided to end a friendship, but I’m better off for it.  

I learned you’re never too old to snuggle with your mom.

In June I went to OC with a group of friends and I learned 3 things. Well 4 if you include learning that you should never attempt to pole dance on a square pole.

-I learned that going to a karaoke bar with your friends and watching the drunks sing off key is fun, but being one of the drunks singing off key is more fun.

-I learned that walking on the beach at 130 in the morning watching the wave’s crash onto the shore is fun, but tearing down the beach at 130 in the morning screaming at the top of your lungs and diving head first into those waves is better. 

-I learned that getting up at 0500 in the morning to watch the sunrise over the Atlantic is breath taking and those that turn off the alarm and roll over and go back to sleep can’t even began to understand what their missing. But you understand.

In July I went Hang gliding. As I soared over the landscape seeing the bay and the ocean and the rivers meander through the landscape, it was like I was looking through a different set of eyes. It was spectacular. I can guarantee that my friends who were soaring through the sky with me, didn’t see what I saw, but you would.

I have always traveled and on the top of my bucket list was Northern California and Peru, but was an unfortunate victim of the economy and an upside down house that took 4yrs to sell. I have to save money, I have to make up for what I lost in this economy. I can’t travel now. I told myself that Someday I’ll go…someday. I learned that someday is today. In August I went to Northern California with friends. We ate Ghiradelli Sunday’s in San Francisco, we drank wine in Napa Valley and hiked in the Redwood Forests. On May 23^rd I leave for two weeks in Peru.

I learned that you can absolutely care for people you’ve never met. That total strangers can become friends and their good days you share and their heart aches are yours. Different ages, different stages in life and around the country. I fought my battle side by side with an amazing group of women. When I felt like I had hit bottom and couldn’t continue on, they picked me up and pushed me forward and said “We’re in your pocket”. They will always be in my heart and I will always be in their pockets.

As the summer days passed I realized things were brighter, crisper and clearer. I am enjoying life better than I ever have. And I’ve come to the realization that I don’t need a life altering epiphany.  Some grand answer to what I’ve learned because this tastes so much sweeter. Next time I'm asked the question. "What have you learned from this experience?" I choose not to answer because what I've learned can't be put into words for those who have never walked in my shoes. We didn't choose to get Breast Cancer but we can choose how we live our lives. I choose not to worry about tomorrow because it robs me of being present and enjoying today. I choose to live my life with no fear. And I choose to dive head first into the waves instead of walking along the shore. Thank you.

Oh Djj, that was just wonderful......brought tears to my eyes! what a beautiful speech and I can only imagine the tears in the audience.  Your words were eloquent and funny and raw.  You did good my friend!

I've been in a funk lately.....it's pissing me off.  I've actually even been contemplating getting on something to get me through this time....any thoughts on this? I've never been a fan of taking pills, but there must be some sort of anti-depression/anti-anxiety med that could help.  I was taking clonazapan (sp?) but went off that a couple of months ago, maybe it wasn't a good idea.  I'm struggling with insomnia and read that is a side effect of the tamoxifen.  Ugh.  

Nighty night !

Michelle

Deb, what a wonderful speech. 

I just came back from a four day weekend with a group of friends. It was a soul cleansing time for me. 

 We have gone to a B&B for 9 years in the little town of New Hope, PA. We all know each other through our rare breed of dog. We  meet at dog shows and through a on line dog group, sort of like this group.  Each year we have had women from Texas, Washington, Florida, Virginia, NY, Pa, Indiana and even one year from Canada.  The numbers vary and this year was a small group of 6 and 2 more who just spent one day. but we have been as many as 16 one year.  They were my rock of support along with all of you women going through this rotten year of cancer treatment.  The weekend flew by, lots of eating, drinking, shopping and more shopping.  We try to time our weekend with the big arts and craft festival.  This may be the last year I will be able to take with my little dog with me since she was recently diagnosed with inoperable bladder cancer. The day we went she had her last cyber knife radiation treatment ( 3 treatments of 10 Grays each, my treatments were  only 1.8 Grays each time).  She will start chemo in 2-3 weeks.  Dogs tolerate chemo much better then people apparently. I will only continue treatments if she tolerates them and does not run out of veins.    She was my constant companion through my chemo so I will do what I can to help her as long as she is happy and  having a quality life.  Wish I had medical insurance for the dog!

Hello ladies - just catching up.

I had my 4 month followup last week.  My MO reviewed my PET Scan from last year and since there was no evidence of cancer anywhere else in my body, she feels that it is unnecessary..... My labs were good, other than I am anemic.  

Kimmie - I am so happy to hear about your weight loss.  Love your posts.....

Chico - Happy Belated Birthday!  Thanks for sharing your pics.  Oh, I think you had a question regarding TE's.  My TE is rock hard, the rads made is worse.  My PS told me that I might be able to switch it out in March.  What are you hearing from your PS?

Deb - I was blessed and moved by your speech.  I like how you focused your speech on living beyond bc, it was very motivating and encouraging.

Barbara - Love the dog pics.  You have one blessed dog.....

Michelle - There is no harm in trying antidepressants.  I hope it enables you to get some well needed sleep.  

Hope you all have a wonderful day,

Kim

Michelle, I am taking Effexor. It decreases hot flashes, while actually taking care of depression and anxiety. 

Barbara, hoping and praying for you and your fur baby. 

Deb, amazing speech!

For those with follow ups that went well...congrats!!

Meet my newest Dr this afternoon. Due for my first colonoscopy. Fun....

Love you all!

Forgot to mention. I have a new fur baby. John got her for me two days ago. Meet Nugget.

Robin, can't wait to see the pics of your new baby!

RO is ordering U/S on Leftie....UGH! I think he is just being extra cautious, because that's how he is; and I have dense breasts. Feeling kind of numb. The Dr appts are so mentally exhausting to me right now. End of rant.