Starting Chemo in December 2013

aff. You and I start the same day!   33 treatments??

oh my word !! I am so far behind ... on the posts. congrats to rads getting done !! DJJ have fun on the date ! yay.....I need to get a pic to add to the collage, love it.

Been home from Toronto now for 2 weeks, wow, settled right back in as though I never left.  Its been 6 months since the death of my brother and we all had to relive it on saturday when we buried him.   he would be so proud that I did it !! I got through the last 10 months.  

However ladies I think now the new conversations along with rads getting done will be how do we move on.?  That is my biggest thing right now.  I am seeing my oncologist in the middle of the month, a few questions, why the eff are my nails being jerks right now... and can I start a new weight loss regime.... mama needs to get skinny !!!! so at least at that time we will do some bloodwork, maybe that will help ease my mind.  I am just terrified after all this crap that it didnt work, why cant they check !!! it drives me insane that they will not do a scan here, I think I may just hit up my family dr for a PET scan before I go insane.  I've been doing an awful lot of research on cannibas oil that may be my next step just for more reassurance, cant hurt  .

xo

Thank you Kim!

Jbokland- I do too. And I won't start them until mid- end of September.

Jbokland, I love love love that picture.  It brought tears to my eyes.

Kimie, Your brother would be so proud of you.

Ladies, no worries!  We will stick with you throughout this!

My date was so much fun.  We are definitely going out again.

Keepthefaith, I also forget that I Had (past tense) BC even with a red boob and going to rads everyday.  Oddly, I don't have any fear.  One of my radiation waiting room BC ladies and I were talking about it this week.  She said that to her it's been like an annoying cold that she needs to get over so she can have her normal life back.

I am on the planning committee for a survivor tea party in September and have been asked to speak (because I spoke at the Avon walk).  To tell my story and what I learned.   I didn't really want to do it because I want to put all this behind me and don't even want to think about it.  But I'm doing it because most of my medical team is on the committee and they have been so wonderful.  But this is the last BC poster girl thing I will do and I do NOT plan on telling my story.  We all have the same story, realization, fear, TERROR, loneliness, side effects, etc. etc.  I am only going to talk about SURVIVING!! I am going to talk about the little things.  Like when I was camping and went for a walk late at night and the beauty of the thousands of fire fly's in the mountain brought me to my knees and I wept.  Nobody else gets to see such beauty in such clarity as us survivors do! Or how it's fun to walk on the beach watching the waves crash at 130 in the morning with your friends but it's more fun to tear screaming through the sand and dive head first into those waves at 130 in the morning.  Something I would have never done before BC, who wants sand in your ass at 130 in the morning.  I DO NOW

I posted this on Wednesday. It's long...

------------

"Sometimes my life just don't make sense at all.  when the mountains look so big and my faith just seems so small..." Rich Mullins

Number 33 of 36 radiation treatments today. I only have 4 treatments left total. Today, tomorrow, and two next week. As I come to the end of this treatment (even though I'll have a few more surgeries and be on hormonal therapy for 5 to 10 years and oncology follow ups every few months for the first 5 years), I start to wonder how life is going to be different as a survivor. I know I need to heal physically. I need to gain strength, change my diet, change my lifestyles , change my mind set. I still suffer side effects from the treatments. Some range of motion issues in my right arm, cognitive changes, physical changes, fatigue, and physical weakness...

My faith has been tested too. Is it wrong to question your faith? I don't necessarily think so. I'd like to think God actually welcomes this. So that he can answer those questions and further Glorify Him. I've often thought of Job , And how God allowed Satan to test his faith. Not that I am likening myself to Job by any means. But it has always been difficult for me to understand that story in the Bible. Even though at the end God restored Job, I still find it difficult that he had to go through so much loss. I sometimes entertain the idea that we are nothing but characters in a huge snow globe that God likes to shake up sometimes and see where we land. i've questioned a lot of stories in the Bible lately. Some of it seems hard to fathom. Of course proverbs says to trust the Lord with all your heart and lean not on your own understanding. But to read about Adam being created from dirt and the virgin birth... so many of those are beyond understanding. God bless my husband for always being willing to talk to me about these things. He mentioned that in the 1800s if you had told someone that there would be an airplane that you could fly from one continent to another that they would probably laugh because that was unbelievable in that time. And what about going to the moon? What about in the 1400s when Columbus took sail and everyone thought he was crazy because the world was flat...

Don't get me wrong. I love God and I know that He exists. I know He loves me (even though I fall so short of deserving His love). But there's nothing like a traumatic event, a tragic loss, or life-threatening disease to make you question your faith. Even as I question it, I cling to it. I know that sounds like an oxymoron but I can't explain it any other way. I feel like God welcomes the relationship I have with Him and allows me to question so that He can show His glory in His answer.

Jesus loved to minister to the broken. And I am broken. Arent we all broken in some form? Don't many of us,myself included, wear a mask sometimes? trying to show to the world that we are perfect- our children are dressed perfectly,we eat healthy all the time, we are always at church, we are always happy, our lives are always perfect. But if we are being honest, we know that's not true. It's hard to admit that to ourselves, our neighbors, and our God. Maybe I'm only speaking for myself.... I am so glad that Jesus did not pick those who were perfect to minister to. I am broken and He ministers to me.

Case in point, Ronnie came home the other day with the DVD called Ragamuffin. It was the story about Rich Mullins. He was a Christian singer/songwriter and musician in the 80s and early 90s. You probably would recognize many of his songs and may or may not know that they were written by him. I recognized his name although I did not know his story. He shared ideas of masks and brokenness. Ronnie had never heard of him but was drawn to the DVD and bought it. It really made an impression on me. He was in love with Jesus but he was also broken. He tried to live his life as Christ would have wanted. And as I have gone back to listen to the songs that he wrote I have to say that Ronnie finding that DVD was a total God thing. His songs are speaking to me. Especially this one :

Sometimes my life just don't make sense at all when the mountains look so big and my faith just seems so small.

So hold me Jesus. I'm shaking like a leaf.

You have been my king of glory

Won't you be me prince of peace"

The song continues with a line about surrender...

"Surrender don't come natural to me.

Id rather fight you for something

I don't really want

Then to take what you give that I need"

"So hold me Jesus. I'm shaking like a leaf.

You have been my king of glory

Won't you be me prince of peace"

How powerful is that? Thank you Lord for always providing the answer. Our God is truly an Awesome God.

djj, Holli, thanks for sharing your thoughts...it makes me not feel so alone! 

Holli, your post brought my emotions to the surface...so well said and you made me cry! So glad you are healing. 

jbokland, love the picture! 

kimie, I don't even know what to say...sending you a HUG!

I have ordered Susan Love's book, although I am not certain I want to delve into it right now. I found a website that had a "clinical trial", that was actually a survey on BC and spirituality. I participated. It brought me some insight and hopefully will be of help to someone else. Here's the link, if anyone is interested. There are several more interesting trials going on. The main site is "Living Beyond Breast Cancer".  (lbbc)

http://www.lbbc.org/Understanding-Breast-Cancer/Cl...

For those of you starting soon, hang in there...you will be looking back soon!

You ladies are the BEST!!

ladies reading all the recent post, you are all such awesome survivors. 

This disease test a lot of things - faith, family, friendships, finances and just your view of how you fit into the world.  Sounds like everyone is on the mend or getting there, life has to just go on again. 

My hair is stubbornly refusing to fill in much on the top.  I love the back and sides though.  Gave up completely wearing any head coverings, just too damn hot. Walked by a lot of people who do not recognized me with short white/gray hair.  Once I say something they recognized my voice and go OHHHH what happened. Most people say to keep it the natural color. It does seem to have a bit of wave in it, my old hair was thin and dead straight.   I am still not sure I want to look my age though. Eyebrows still need a lot of help, they are growing back but very light gray so far. 

Hope everyone has a great long weekend.  I am going downtown to watch the fireworks tonight. 

Barbara,

Try my tip of an aerosol dry shampoo and spray it to 'fill in' the thin spots.  I use it all the time on the top.  Granted, my hair is white, but it may be enough of a visual to camouflage the scalp and the thinning appearance!

so much that I want to comment on, but for now . . .

Independence!

Morning ladies -  I want to say that the word that comes to my mind from yesterday is Hope.  At my son and DIL's White Trash Party there were  a lot of family and friends of various ages.  Everyone was very complimentary and relieved that I am still alive and kicking.  I realized that I was the poster child of Hope for this group of people.  Of course as the drinking progressed, I was sober, I had to hear the "I know someone who died of cancer" stories... but I realized that they saw life and hope in me and that my existence and my strength ministered to these people.  Anyway, my ability to give hope to others is one more motivating factor in my new life plan.... 

Kimmie - I agree about the scans, I have a friend who had a type of ovarian cancer 6 years ago, she get's a scan every year.  Why aren't they doing this for breast cancer?  I hope that your brother's memorial service brought peace and healing to your family.  Sending a hug your way.

Jbokland & Oranje- It brings me joy to see life and joy on your faces, thanks for sharing.

Barbara - I have slow growing hair.  I like jbokland's hair tip.... you are looking great.

Oh by the way, My DH won the costume contest.  That's my 21 year old son with us in the pic.  I have two hungover men in my house this morning.  

Kim

Kim, you look great! And could your husband possibly be wearing your wig lol?! I love how we all briing so much meaning to this journey. Your sentiments were beautiful.

Oranje, great picture. You look strong and amazing. I can see those long swimmer arms! Let's keep seeing these pictures of triumph in amazing locations or just our backyards

Holli, your post was beautiful and eloquent. Ive re read it a few times and each time it's more amazing and moving. Where can I find your blog? Would love to read more of your thoughts

Jb, that photo of you, your wife and friends just has to make one smile. The joy is infectious

Barb, your hair looks great. It reminds me of how robin's looked and now she had GREAT hair

DJ, read your post again too. Love it, YES!

Well I was napping and now hearing my husband using my vitamix I think?! We were going to make beet brownies with beets from out CSA but I think he started without me...may have to rescue! Lol

Michele, these pictures look so great all together! Hope you really enjoyed the food and cocktails! Omg, you are done on Monday. Awesome! We finished chemo the same day, but  you're so far ahead... (But I started late). What will you do to celebrate? It's a difficult time now, being finished, but not really. Why did you decide to have the other breast removed? That's later this fall right?

This is way too fun! keep them coming!!

wanted to share my early morning post I just made.  Maybe it rings true for some of you too?:). It is long- sorry!

4 in the morning...the scans I mentioned earlier, but never came back to post- warning this is one of those late night deep post not a kids and pool post- a cancer post.

It is not that I don't want to go back to sleep, but sometimes it is nice to be awake at these odd hours. It is quiet. All the girls are sleeping, and I can think or just enjoy the silence. Time is running down on the treatment, but there is no mental countdown. To be honest, it is only getting worse.

So, I asked when would we be scanning this summer to see if it is gone or shrunk etc. The answer- never. I then replied, " so, we are just suppose to go with it?". They said yes. That when I come back in October they would check again. And then again every 3 months until I graduate to 6 months. As much as I appreciate them checking every 3 months, I'd REALLY WOULD APPRECIATE knowing I was cancer free heading home. My head keeps thinking, great send me home for 3 months. I go back to work, hair is growing, and start getting my "life" back just to come back in October and you could tell me- we didn't get it and we have to start chemo again?! This is NOT sitting well with me. It is not about faith and trust and yada yada (Seinfeld rerun came on tonight;) I believe I will be ok. But, a 3 month break does not sound wonderful:(. I have lost too many people to cancer after short amounts of time. Yes this sounds pessimistic. But- you get told you have cancer and see how rosy your outlook becomes. I'll tell you how it is inside my mind because it might be like this for other cancer patients and survivors.....

It got me once- I am an easy target now. I am the previously injured animal being chased by a predator. The immortal feeling I never even knew I had is gone. Immortal might be a strong word. What I mean is to live life without giving 2 seconds a day of how you could pass- gone. Forever. I find myself counting years and adding up the girls ages. 5 year survivor, 10 year survivor (Emery would be out of high school, Ellison almost and LuLu would be 11). Panic- I can't leave them. This survivor years BS freaks me out! But there it is! People waving it around like a badge of honor and I know it is, but it is also a reminder that it is a big deal to make it that far. I don't want to make it that "far" - I want to LIVE! Live like my friends who have kids and have been able to wake up everyday since November 14 not thinking about cancer or death or abandoning their kids. Planning the future like a vacation, new car, or braces instead of counting years of survivorship. Survivorship- what a crappy word. All of this and I walk away a survivor? A survivor? Anyone is a survivor who escapes with their life. A survivor doesn't mean you fought. I think I need another word at this point. I don't feel like survivor is going to fit me until they officially tell me I am cancer free. Which now you know will be months.

I will try to pack up my stuff in a few short weeks here and head home with my head held high. People tell me, you finished the treatment and that is worth celebrating. I hear you, but that is like celebrating the National Championship win in November. Which I guess true tiger fans do, but the heartache is worse when it doesn't happen. I guess I should focus on what I have done and not what I don't know. You see there is rational thought there. Ring the damn bell and celebrate. I just hope I can convince myself that I deserve that celebration when the time comes. Right now I feel like a fraud. Celebrating a win before officially hearing the results.

I worry about how to handle people when I come back. There will be so many that say things like: you did it, you beat it, so no more cancer, I knew you could do it....I dread hearing it because I definitely do not want to explain how there are no scans until late October. And how I finished the treatment, but we will not know officially for a few more weeks. I don't know if I have that strength. 6 days after finishing rads is when teachers report for work. That is where I will be. Putting together the pieces and sucking it up. I am very excited to see my fellow faculty buddies, students and start coaching cheer again. I am only worried about the sweet friends and parents comments. Also, pray I do not have to go through anymore treatments after getting settled back in with the students. Now- the kids do not worry me. They see me now, and they think it is over. The wig is fabulous and the kids only see that. No hair=sick; hair=not sick. Fake hair is all good to them.

I am not writing this for people to feel sorry or offer strength prayers. I wanted to clarify the whole scan issue and the anxiety it has caused me the last couple of weeks. And maybe, if someone says to you - Jodi beat cancer- you can say yes, but nothing official until October. And whenever it is official, I will definitely be celebrating!

Jodi - I feel like that too. Just this morning I was calculating how old my children would be at 5yrs,10yrs, etc. People tell me that I can't think that way. Well - they've never had cancer.  From my understanding BC patients don't get scans. My husband fought for a PET back in January and I got to get one after my first chemo. But all I get after treatment are manual checks and questions about how I feel. Before if I had a constant headache I would go to my primary care doc. Now a constant headache means an oncologist visit. 

I mentioned to our Sunday School teacher that I never thought I'd be facing my own mortality at such an early age. He said "yes, but isn't that freeing?"  Hmmmm... I'll have to think on that one. 

I struggle with the purpose of all this. I still think I'm too close to it all to begin to reflect just yet. I feel I need to mourn my life before cancer before accepting my life after cancer.