Pinktober

Well, we’ve almost made it to the end of October which is Breast Cancer Awareness month and I’ve yet to write anything about my struggles, my journey or my on-going dance with cancer.  Perhaps today it’s time to update from a survivor who was diagnosed on New Year’s Eve of 2001.

I’ve spoken to many people, sharing my story when I thought it would help and connecting with them when I knew they needed someone to simply understand the devastation that we feel when life turns upside down.  I’ve been a Reach to Recovery Volunteer, helping those who want to find a new normal and who are looking for a way out of the labyrinth of grief which many times surrounds us when we are hit with a cancer diagnosis.  For everything changes in our lives when cancer hits.  Life, relationships and health all change and we suffer until we can find our equilibrium.  We grieve, we mourn and we endure what we previously thought unthinkable.  We can stagnate in that pool of darkness or we can reach out for the light.  As a survivor for so many years, I try to be an inspiration and to shine my heartlight so that others can find theirs and begin to move on in their lives.  I know it’s not easy, for I have been there, done that and still struggle with the aftermath of cancer.  It seems I am never fully out of its grasp as it rears its ugly head in my life from time to time as a pointed jab and a reminder that life is a gift and everyday we must be grateful for this moment in time.

With breast cancer in particular, we suffer the indignities of losing our outward signs of femininity (breasts, hair (chemo)) and many times our ovaries which help keep our feminine hormones going.  Sometimes we can even lose touch with ourselves as we struggle to come to grips with a body which many times in clothing looks good, but in our birthday suits, is riddled with train track-like scars and missing pieces.  It takes a strong woman to get up every morning and to continue to strive to be the best person she can be when her heart is breaking.  I admire those women who can be vulnerable and yet be strong, who can laugh, but still cry, who can feel even when her body is numbed by surgery or can remain peaceful while hearing careless comments from those who say they love them.

We all have a story to tell when it comes to surviving breast cancer.  Each of our personal stories is a bit different, but the fundamental grief and subsequent healing of body, mind and soul are similar.  Today’s post I dedicate to those friends and family who have gone before me, those who are presently enduring breast cancer and to those, like me, who are still here, somewhere in purgatory, never quite released from its icy grip, but still hopeful that it never quite fully returns.

Shine On!

xo

Bent, But Not Broken

Lately, my Mom says, “Oh Lord, help me” a lot.  Every time she says it, I want to answer ~ “and help us too!”  Sometimes I even say it aloud or I tell her that we’d be millionaires if we received a dime for each time she said it lately!  Giggle Giggle.  That’s truly how much she says it.

I’ve heard all the quotes about ‘God doesn’t give you more than you can handle’ etc.  You know the ones that people offer when you’re dealing with way too much on your plate that’s sometimes not even yours to handle, but you are handling it?  I used to think it was a cop out quite honestly.  I mean really?  If I listed all that I’m dealing with right now you would think I was telling a story (lie), but I’m not.  It’s all quite honest and real and heavy stuff.  It seems like every day there is more piled on my plate and I’m not quite sure how I got so ‘lucky’ perhaps God thinks I’m made of cement because I’m sure growing stronger every day and not because I want to…but because I have no other choice.

I bend…but I won’t break.

As a cancer survivor, you learn all about having to take care of yourself.  There’s nobody else in the middle of the night who is listening to the thoughts that barrage our minds, hearts, souls and bodies.  You have to learn to make peace with all the chaos that you’re going through and when you think you’re going through hell, you’ve just got to keep taking baby steps.  And that’s where I am again ~ taking baby steps ~ through all the stuff that has fallen on my shoulders (and my Sissy’s).  Together we are bending and we each take turns in being the stronger one at that moment when the other person holds up her hand with the white flag and needs a break.  That’s the beauty of sisterly love and experiencing a bonding with your sister through traumatic family experiences.  You don’t even have to ask, you just know she needs a break and you take over for awhile until she’s rested and vice versa.  That’s just the way it is.

But as for bending until I break ~ well, that’s for another day I guess.  Right now I’m just hanging in there ~ hanging by a thread ~ holding onto that knot that I tied at the end of my rope.  I’m trying with all of my might to keep going through thick and thin and to not give up.  And I won’t.  But I’d like a bit of a rest please Lord.  Could you please just take over for awhile and take some of this heavy burden off my shoulders?  I’m a good person.  I can understand that there’s nobody else to help and we are willing to help, but golly, could you please not add more worry to my life everyday?  I need a good night’s sleep.  I keep handing off my worries to you, but the next day, I get more bad news.  I’m trying to stay calm, but I’m a work in progress.  I don’t want to give up, but I’m suffering here.  I’m feeling broken.

I bend, but I don’t break…at least not yet.

Shine On!

xo

 

How to Deal with Chemotherapy

Go ahead, introduce me to this ‘cancer’ fella…

Together, with our combined forces of hope, perseverance, positive thinking

and butt-kicking skills…

We can beat this thing

INTO SUBMISSION!

I mean…remission.

I endured ACT chemo back in 2002 ~ 8 rounds given once every 3 weeks.  So for me, I was feeling yucky for the first 2 weeks but the 3rd week was my ‘party week” as much as you can ‘party’ while dealing with breast cancer.  Party for me meant that I got out of the house, perhaps lunch with a friend or if I had the energy, a bit of window shopping.  My friends and family made sure that the last week before my next round of chemo was for fun so that when I was knocked down the following week, I had some fun memories in my back pocket and then I also had something to look forward to 3 weeks ahead!

I met with a nurse who had endured chemo at my oncologist office and she gave me a few tips which I pass on whenever I hear of someone who will be having chemo.   There’s also a few things you should know about what this chemo does to you.  So hold my hand…and I’ll help if I can.  Please know that these are simply suggestions based on my experience.  As you know, I”m not a doctor so please check with your own physician and nurses.

PORT:  I had a port, which I loved because it meant that I only had one needle.  Of course, that needle still pinched when it went in, but because my veins weren’t very hardy, it was easier and safer for me to have my chemo directly inserted into my veins through my port.  Ports don’t hurt and you hardly know they are there in case you are thinking of getting one.  I do suggest that you wear a front buttoning shirt or zippered jacket so that the nurse can access the port easily and you can stay covered as chemo takes awhile and you will be there for a few hours.

NEVER EVER EAT YOUR FAVORITE MEAL THE NIGHT BEFORE CHEMO!  That was a rule I was given before I had my first session and it’s stayed with me.  Do you know why?  Because if you throw it up after chemo, it will never be your favorite meal again!  It was a cardinal rule for me and even though I only threw up the first night of my first chemo session, I never chanced it.

The night before chemo and the first few days after your chemotherapy, eat bland foods and nothing greasy.  You do not want to aggravate your stomach any more than it will already be with the chemo drugs, so take it easy.  I remember I came home from my first chemo session and I wanted mashed potatoes.  Listen to your body and it will steer you in the right direction.  Bland, non-greasy foods are always good for you during chemo as you may feel nauseous afterwards and greasy foods will aggravate your stomach.  Also, make sure you take your anti-nausea pills on time and as prescribed even if you are not nauseous.  For once you get that nausea feeling, it’s hard to shake it.  An ounce of prevention is worth a pound of cure!

What to Wear:  For chemo sessions, I suggest wearing something comfy as you will be there for a few hours.  There’s nothing like being in something stretchy and warm so that if you are given a recliner, you can relax while you have your chemo.  Also, you will be weighed every time, so it’s easier if are wearing the same type of clothing so you can monitor your weight better.  Not that it really matters, that was my own hangup as I did gain weight on chemo due to steroids etc.

What to Bring:  Because every oncology office is different, you may be able to have your loved one with you while you are there, but some offices, like the one I was at, didn’t allow family in the chemo room.  So, I used to bring a book to read which honestly, I don’t think I ever really read more than once.  You see, sometimes you start chatting with the patients around you as you are all in the same boat, all receiving chemotherapy.  Because your sessions are usually the same day, same time, you get to know the others who are receiving their chemo treatments on a similar schedule as yours and you begin to bond with them.  It always amazed me how we made almost instantaneous friendships at chemo.  I was blessed that the oncology nurses I had were such kind-hearted people who were so loving towards us.  It made it ‘almost’ fun to hang out there (ok, you know I don’t mean it) but it was the people, the nurses, the doctors who made the chemo easier to handle.  I hope that you are as blessed as I was…

Food:  Because you are there for hours, we were usually given ginger ale (which helps with nausea), water or apple juice and sometimes even ice pops.  I liked to snack on cheez its which aren’t very nutritious, but they were bland and a little crunchy and for some reason, they helped me with nausea.  See what your doctor and nurses recommend.  Stay hydrated.  Eat small meals which help with nausea as well.

ACT Chemo HAIR LOSS:  2-3 weeks after your first chemo, you will lose your hair.  All of your hair.  The hair on your head, your eyelashes, eyebrows, the hair in your nose, the hair on your legs (yup, no shaving them for awhile!), the hair under your arms and (Rated Mature:  you will even have that popular Brazilian waxed look without ever having to endure the pain of being waxed!)  So you will need to deal with your hair coming out which for some women in particular, is a hard piece of the chemo trauma.  For me, I knew I had to do something when my hair began coming out in clumps in my hands when I was in the shower.  It was mind-blowing for me.  It struck me in my gut in the most awful way.  So my husband and I took matters into our own hands. You can read about it here.

American Cancer Society has a great program called Look Good Feel Better click here to find more info  which is a great way to learn some make up tips on how to draw on eyebrows etc and make yourself feel prettier with new makeup all for free!  While you are there, you can even bond with other women who are fighting cancer as well.  There are also opportunities to be fitted with a great-looking wig for free with your local American Cancer Society.  You can also purchase turbans and scarves to keep your head warm in the cold winter months because quite frankly, a bald head gets chilly at night!  And if you should need breast forms and even stick on nipples while you are awaiting reconstruction, you can get those there as well.  ACS is a great resource.  You can even ask to talk with a Reach to Recovery volunteer who will be hand-picked for you.  This woman understands what you are dealing with because she’s been there already.  ACS will try to match you with someone who is most like you ~ age, marital status, children, stage of cancer, type of surgeries, chemo, radiation etc.  For years I was a Reach to Recovery Volunteer.  It makes a difference to know someone understands what you are going through without having to explain.

I hope this list helps you as you are dealing with cancer, chemotherapy and all the rest of the mess that encompasses fighting the disease.  You can do this ~ believe me, I am/was the wimpiest girl ever who endured breast cancer!  I still feel faint at the sight of any needle, but I know that…

You can do this.  I will help you.  I believe in you.

So reach out,  take hold of my hand.  You’ve got a friend in me. 

I’m always here for you with a smile and with understanding.

Shine On!

xo

Bonding with Strangers

I awoke this morning at 3am which isn’t that unusual for me for it happens often.  In fact, when I have these in the middle of the night awakenings, they are often accompanied by insightful messages and ideas which I use to write about in my blogs.  Last night’s 3:33am thought has flourished into an idea which I hope to expand upon another day.  But for now, I wanted to talk about connections.

Have you ever met someone and immediately felt a connection ~ felt like you’ve known them, immediately begun to tell them things that not many others know about you and felt safe doing it?  Just knowing it was right to share?   I have enjoyed that gift in my life many times ~ and a few have been life altering in a good way and for JAngel (you know who you are) I am very grateful.

Yesterday my phone rang ~ the head coordinator of the American Cancer Society Reach to Recovery Program called to ask for my help with a newly diagnosed 32 year old woman who had just had a double mastectomy.  I had stopped being a R2R volunteer this year as I had so much on my plate already that I didn’t think I could help anyone else.   However, as we talked yesterday, I realized that it’s time for me to return to volunteering and to helping others travel this journey.

And as BAngel (the coordinator) and I spoke on the phone, it was like we were old friends even though we’d never met.  Both of us are 10 year survivors and as survivors often do, we bonded within moments and began to tell our respective stories to each other, easily asking and answering questions of how the diagnosis was made, what doctors we had (and we shared one!) and joked about some of the funny things that had happened to us along the way.  We shared how we found our breast cancers, what surgeries we endured, what types of chemotherapy we had, how much radiation and how we are feeling today since we’ve hit the 10 year marks!  We also shared the sad side of being a part of support groups where our friends passed away and how gut-wrenchingly scary it is to hear of the death of a breast cancer survivor sister.  Nobody else can understand that sadness except another woman who has lost a friend to the same disease you share.  It is something that just stays with you.  I shared about my friend Jenn https://misifusa.wordpress.com/2012/10/23/spirits-and-music/  and it was a great relief to me to be understood ~ for BAngel to know and understand how I felt in losing Jenn…because she’d lost a friend as well.  I went on to explain that out of our original support group, Jenn was one of 3 women with whom I was close who passed away.  After losing Jenn though, I wasn’t able to return to the support group.  It was just too sad for me which was how I eventually became a R2R volunteer.

We talked for 2 hours on the phone, oblivious to all else except to getting to know each other, and by the end, it felt like we’d been friends for a long time.  In a word, we simply understood each other because we’d walked similar paths.  That part of the journey never gets old for me because I always feel like I learn something new with every survivor I speak with and I hope that they do as well.

I think there’s a lot we can teach each other if we would only be open to listening and learning.  I recently read a quote from someone which said we have 2 ears, but one mouth so that we can listen twice as much as we speak…wouldn’t it be nice if we used them that way?

I love our blogging community because of the connections we continue to make ~ to me, it’s such a gift to connect with all of you.  I want to thank you for all of the lessons you’ve taught me, the inspiration you’ve given me and for the prayers and smiles you’ve blessed me with this year.

Thanks for being you!

Shine On!

xo