Month: April 2016

Exercise

OK so let me tell you, before my cancer started affecting my life (I struggled for 3 years before it was found, but that’s another story I already rambled on about), I was thick and juicy but pretty healthy. Before the dx, I started to gain weight, I had no energy and was in pain ALL THE TIME! I would take a crap ton of advil a day. After my dx, the meds they put me on and the menopause really socked it to me.  I have gained 40lbs in the last 2 years. I was told I could not exercise as the bone tumors made me prone to fractures and breaks.  I have 2 in my spine, 1 in my rib, 1 in my femur and 1 in my hip.  Aside from the rib, breaking or fracturing any of these bones would end with an unpleasant result, to say the least. My Dr. Chang, lovely Dr. Chang does not seem to care about my weight gain. Every new med he would say “You’re not going to like this but it will cause weight gain!” (I think he gets a kick out of giving me that news) I remember in the beginning, trying to find silver linings about my disease and thought “Oh,  I guess I am going to lose some weight, all cancer people are skinny! YES!” Alas, this is not true. Leave it to me to get the fat cancer!!! I just can’t catch a fucking break!

Also, living with daily pain, sucks! I’m tired, so very tired. Example: mowing the lawn=increased pain and feeling drained and more pain medication. So not fair!! The reality:  treatments will never stop & chemo will be a part of my life until my life ends. (man, that sounds bleak lol)

Anyhoo, on with the story! Where was I, tired, sore and fat OK! So, I suck at exercise!

Introducing my salvation, Natasha van der Wÿst!!!  *insert trumpets

She kicks my ass!! and I love her for it! xo girl!!! I can not explain properly how much she has changed my world!  She is healing with her touch, motivating with her words and inspiring with her spirit! She is so creative and makes every torture session AMAZING! I have now been working with Tash for a month and a half. I have lost inches and pounds WOOHOO!!! But let me tell you what I have gained. A purpose! A friend! Sleep has increased. (it’s a cancer thing, getting any is a gift! lol). Feeling more positive about myself and just the day! Stronger! More prepared for the future days ahead. The workouts are stress relieving, focused and self motivating! I think I may have said it before: don’t get a therapist, get a trainer!

Tash’s knowledge and commitment are remarkable!

When we started, it was quickly discovered how out of shape I was. I mean a sweaty moaning mess!!! I was exhausted 3 minutes on the elliptical for crying out loud! I had no strength in my arms, baby arms really, no wonder I could not whisk an egg or give a proper hand job without tiring and changing hands constantly!! With hard work and determination (a few tears and sore muscles) and Tash’s never ending encouragement we launch an attack on my fat and my cancer 3 days a week and are seeing progress! I can now go 20 mins. on that elliptical and my baby arms are growing stronger everyday!!

She has taught me so much about diet. Protein sources matter people! Water Kefir and Kombucha. Bread that is not bread HOLLA! Seriously, check it out, white bean grape skin bread, gluten free 2 pieces 70 calories, 6 grams of carbs and 3 grams of fat (I know I just blew your mind because mine was blown too), go get some! Quest bars, organic foods, wheat grass and barley grass. We have to nourish our bodies, not poison them! I can’t stress enough how important diet is for everyone but especially for people battling a disease. Preachy right but seriously, it can change your world too. Amen!  (now I want a cheeseburger Christ’s sake!!!)

It is said and printed in almost every article, blog, book etc. how important exercise is. Hey I get it. Feeling like shit, sick and tired, someday’s it is hard to make yourself a simple cup of tea let alone get up and get out to exercise. It gets easier my friends, the more you do it, like anything the first step is the hardest! You will feel better! SO take in a deep breath and GET UP! GET OUT! FEEL BETTER! You are strong and deserve to feel your best, that is when we are unstoppable!!!!

I love you Tash, my trainer, my friend, my savior!!!!!

 

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Remembering the beginning…

The point of this one…not sure yet. Perhaps it will be found by the end of the story.

This one is a little difficult for me, dredging up angry overwhelming sad feelings and remembering full out sobbing that would send my dog running and hiding, sleepless nights, panic attacks, all of which I had no control over.

In one way, I was relieved, FINALLY, after years of feeling like a crazy person begging for help from my doctor, I had a diagnosis! There was a reason I felt so horrible! I sought out answers from my doctor for about 3 years only to be told, oh you need antidepressants, you need to lose weight, stay away from sodium. Fucking bitch, there I said it, it feels good.  I don’t blame her for my cancer, I do however blame her for metastatic cancer. Maybe if she listened to the girl who never bothered with doc’s very much. Who was making appointments every couple of week crying for her help, in so much pain, no energy, knowing in my soul that there was something wrong. Maybe if she listened instead of dismissing or judging, I would have had the chance to kick this cancer’s ass instead of living with it. There is nothing worse than feeling dismissed, well maybe there is 😉 !

Remembering going to work every day in so much pain and fighting to get through a day. Trying to be a good mom, a good wife, a good friend all the while loosing my mind. Driving everyone crazy with my daily pity parties moaning about how awful I felt.

Some of my symptoms:

  • Tired- all the time
  • Pain- my entire body hurt everyday (tried taking advil 10-16/day)
  • An all around feeling of “not well”
  • Strange heartbeat- One night after a friends birthday get together, I woke in the night with a strange heartbeat.It felt like it was pounding and skipping a beat. I had never felt this before and the fact it woke me from a deep drunken sleep was important. I called the doc and got an appointment, ECG and a Holter monitor, only to be told “some people are just more aware of their heartbeats, there is nothing wrong with you”.
  • Breast Lump- One night I thought I felt a lump a big one, very big, hmmm weird I thought. Maybe it was just different breast tissue. After all I had 2 kids and reaching 40 in a few years, boobs change with time.
  • Indent- A while later, after a shower, I was putting my hair up in a towel and noticed an indent at the side of my breast, again hmmm weird, thinking breast feeding and aging was the culprit.
  • Nipple pulled a little to the side- had no idea WTF
  • Burning, stinging shooting pains through the breast.

A nagging feeling kept pulling me to feeling my breast, then saying it out loud “Hey, noticed these things, there is a reason!?!” My brain never connected cancer, I was only 37, breastfed twice, my family doctor says I’m just crazy. After talking about it with my co-worker, Carol (love you lady!!!!), she  told me just get it checked! As I left work that day, I had made a plan to go in,  not my family doc but the walk-in clinic, just get it checked, it will be nothing. At the stop sign, turn left to go in or go straight to go home. Again, fuck it! it’s nothing, let’s just go home. At the last second I turned left. (I am crying right now, as I write this, opening up old wounds and memories, it was the right decision)

Sitting in the room talking to a Doc (think he was training, poor guy) Exposing my breasts and explaining the symptoms, still feeling, I’ll be OK. He felt my breast and went to get another doctor, Now I started feeling less confident. The other doc came in, funny it was my OBGYN from my first pregnancy. As she talked and walked the new resident doc through the breasts checks, she made eye contact with me, I knew at that moment, I had cancer. She could not hide that look. I started to cry. I don’t remember much after that except I was handed requisitions for mammograms and ultrasounds for the very next day. I left with reqs. clutched in hand, tears streaming down my face. Walking through the building, started to cry audibly now, didn’t care about the blurry strangers I passed by. I got in my car and freaked the fuck out! Sobbing now uncontrollably. I was so scared. I made phone calls to Pat (husband), Tina (sister) and Carol (friend/co-worker). THEY FOUND SOMETHING! I don’t remember much about those conversations, except they probably barely understood me.

The next day (it was a Friday), my mammogram. (Holy crap that hurts! btw) The technician, was lovely, supportive and kind. I saw the pictures, she saw the pictures. Horrible nasty spiky cancer, right there on the screen. My tumor was 3.5 cm, it was huge! As I waited for my ultrasound, I cried, but started to come to terms with what was happening. Started to get my game face on. Thinking, HEY, I can conquer this, walk the walk! bare the bald! give me all that pink ribbon shit, I can do this! Praying, please tell me I can beat it, take my boobies, give me the chemo, whatever just please tell me I am not going to die!

Waiting all weekend to see my surgeon on Monday. He will tell me good news..right? He pulled out a needle and took a sample from my tumor. Sat Pat and I down and talked about the results so far. Explained about tumor size, TMN grading and cancer staging. Then told us to be prepared for a stage 4 diagnosis. So naive we were to what that meant, lol I look back now OMG. Leaning forward to look at diagrams, looking at him with a smile on my face. Finding out there is no stage 5.  Listening… slowly the understanding sunk in, sunk in deep, into my stomach my soul. He knew, I knew, what it was.

Soon, I was meeting with an Oncologist and a radiation Doctor. (Here is one lesson my friends, all tests and scans are scary, but when things are moving fast, damn! Buckle up and hold on tight! You are in for a ride.) I had CT’s, MRI’s, x-rays, blood work, bone scans, ultrasounds and biopsies booked for days and weeks!

These weeks were a blur, so many appt.’s and sleepless nights. All the while wishing it was nothing and my family doctor was right, I was just crazy! Sometimes hoping they would call to say sorry we made a mistake. Being in complete denial and thinking I can just WILL the cancer away if I think hard enough. Finding out indeed it was stage 4, too late for surgery, too late for a cure. I remember one doctor talking about my age, I cut him off and said “yeah, I’m young and strong and that helps” only to find out, breast cancer in younger women is more aggressive, well shit! Learning about hormone status, grade etc and finally dealing with “survival statistics”. Normal overall 5 year survival rate 20%, being younger lowers it and the average is 24-36 months. My world was rocked! Now this is strange but a thought popped into my head – I can’t die! Who will clean the toilet?! – Now please understand, we have no control over the thoughts or feelings that pop inside us. It may not make sense to anyone but honestly if the desire to keep my toilet clean keeps me around, I will make her shine!! Bring on the bleach and toilet scrubber! Hey whatever works!

I have come a long way from those crazy, fuzzy dark days. I continue to try to beat the odds and bust the statistics, fuck them! I am above average!! I continue to stay as strong as I can. Gripping to life! Not wanting to leave my kids, husband, family and friends. Cleaning my toilet and smiling, enjoying that I am still able to scrub and smell the bleach.

If anyone is reading this, I guess the meaning of this story is to trust yourself and your body. If you feel you are not getting the help you need, please seek a second or third opinion! Check your boobies!!! Check your boobies!! Check your boobies!

 

 

 

 

 

Sex

First, I would like to thank my loving and patient husband, Patrick! This road is walked by more than just me, and I couldn’t be more grateful for him as a partner.

People don’t think their sex lives will be affected by cancer.Sex is a subject I think most younger people with cancer think of as a big deal. I would say the majority of people with this stage of cancer are of an age that sex is naturally not a part of their lives anymore. I remember attending a meeting for metastatic cancer patients and I was indeed the youngest by far. Sadly the numbers are rising and more and younger people are becoming victims of this nasty disease. Ergo, my thoughts (for what they are worth) on the subject.

BODY CONSCIOUS: As I reflect from the beginning, I felt that my body was so diseased and my husband would never feel the same way about me or my breasts (even though remember I still have them, I still thought he would think they were disgusting).*Would just like to insert my props to all the ladies that have bravely had a mastectomy, your courage and strength amazes me* Along with all the stress and the fact that our entire world had been shaken up beyond recognition. I was bombarded with medications, sex zapping medications 😦 I was NOT feeling sexy. Not to mention how much pain my body felt everyday. Funny story on that. One of my bone tumors is located in my hip. One night feeling very loving towards my Patrick and quite a few drinks in, we couldn’t keep our hands off each other and I will spare you the sleazy details but feeling more limber than I really was, thanks to the booze, I was enjoying myself without the nagging cancer pain, thoughts or body shame.  As I woke to pee the next morning, and stood from my cozy bed, a most horrible pain shot through my body, unfortunately I could barely walk for 3 days.  I would say it was a small price to pay!  :

SAD REALITIES :As we learned more about my diagnosis we learned my particular cancer loves estrogen.  To help keep it from growing, my amazing oncologist, Dr. Chang, told me we had to do what we could to stop the production and release of this cancer feeding hormone. So I was introduced to menopause at 39. Yay!!  If you are a woman, you will already know how important estrogen is for us. If you are a man, you are about to find out (sorry)  So I was catapulted into menopause! What a lovely treat, for all my ladies who have gone through this right of passage, I salute you! Wow! I will stay on track because I could complain all day about the charming side effects myself and my family went through.  Again, thank you wonderful husband!!!  Estrogen is a hormone produced by us ladies, it helps our vagina stay elasticy and moist.  So remove the estrogen and you are left with a flat dry vagina!!! I read up on menopause and read a line so horrifying “vaginal atrophy”, what the F*#K!!  I read on and tried to accept my new phase of life, only to learn I could not take replacement hormones or anything else to help my poor atrophying (is that a word) vagina.  Later that evening, I played  Taps on my phone a shed a quiet tear and mourned my vagina’s death!

HELPFUL HINTS:

Moisture & how to get it with out estrogen: as I previously stated a woman with breast cancer can not take replacement hormones or anything else with estrogen in it.  Here are a few things that can work, but as with any advice given from the internet PLEASE check with your Doc. before trying anything.

Replens- a good hormone free suppository. Benefit- moisture for days and good pH balance Negative- can get expensive

Terra Delyssa Organic Extra Virgin Olive Oil- got this recommended by a friend, thanks to you know who you are 😉 Benefit- hey it’s organic and it’s olive oil! Also can be used for massage  Negative- maybe you don’t like the smell of olive oil

Please feel free to post more hormone free moisture hints or tricks if you have any!

Use it or lose it girls!: as the saying goes, pretty self explanatory. Give yourself some special time, “take care” of yourself. The more you can exercise that muscle the stronger it can be!! Don’t become a born again virgin, it hurts remember!

Remember our partners in crime : So now that you have taken care of yourself wink! wink! Let us remember and honour our significant other!  Take time to give a little touch, hug or kiss.  Remind them that we love them (even though the thought of sex may be the farthest thing from our minds). Massage is a great way to feel connected and loved for both involved!  Hand jobs and blow jobs, well really, what else can I say.

Finally just try to enjoy each other and get past all the yucky hard stuff. Remember we are women and we are sexy dammit!! Please don’t forget that! It is so important that we try each day to live as we did before cancer, embracing the gift of time we were delivered when we were told we will die sooner than we thought.

 

 

Kids & Cancer

Probably one of the hardest reality’s of my diagnosis.

As a new parent you anxiously await the milestones your children will hit,first smile, first laugh, crawling, walking, first words, first pickle (one of my favorites lol)

As the years go one and your children grow older, the milestones change. You wonder about highschool, dances, first dates, girlfriends/boyfriends.

A few more years go by and you begin to think of them in their future’s and what they will be like as adults.  What kind of career they will choose, wedding days, grandchildren.

I learned quickly that the odds of me being present for most of my children’s life milestones are quite rare. I will certainly be lucky and be utterly grateful if I can fight this disease long enough to behold these remarkable life experiences (that is and forever will be my ultimate plan). I had to face my grisly bottom line. The beginning of this journey was filled with a lot of mourning for the future I was going to be robbed of. I had to accept the awful truth. I will not be here. I will not be here to sit with pride and watch as my children graduate college ( I will be blessed if I make it for highschool grads), find true love, marry and have children of their own.  I will not be here to answer questions and guide them on their exciting life journey. I will not be here for love advice, parenting advice or cooking advice.  I will not be here when they have their hearts broken by first loves; unable to hold them and wipe their tears as my own heart breaks along with their’s. I will not be here to spoil my grandchildren. It is truly a gut wrenching reality, everyday.

After my death, how will that affect them?! What kind of pain will they feel? My mind and heart deeply hurt when these thoughts creep in.

My husband and I decided for sure to openly communicate with our children about this disease.  Gave them the basics of cancer and how it affects the body. Talked with them about possible treatments and side effects.  Gave them the open door to questions and concerns. Taught them it is OK to be scared or sad. They attended a children’s group through the Hearth Place (An amazing place for all your cancer needs!) Gave them the assurance that I will not falter in my fight. I remind them to live life and not let anything hold them back.  When you fall get up! Fear can not and will not rule your future! Experience! Take a leap of faith! Do not waste opportunity! Love!!!! I do my best to reinforce my words by demonstrating them as best as I can.  Our family leans on each other  I am so grateful of everyday I have with them. I hug and kiss to the point of annoyance I am sure, but it is lovingly accepted and returned!

We try to live life as normal as possible as this black cloud of cancer hangs above our heads. Cancer does not rule our family, we are learning to accept it.

I now struggle with rejecting the thoughts of my lost future with my children. I focus on today and clutch to tomorrow. No matter the time left in front of us, we cannot let it shift us from our present time. Enjoy, love and cherish is all I can do!