Tag: kids and cancer

Showing my (dirty) underbelly

A downer of a post. Struggled with posting. But, Pat reminded me that this blog is to write, it’s about my feelings and journey. So staying honest to me and my blog, here you go. For those that know me, you know I will rise. Sometimes these thoughts need to be released and who knows, if someone else has felt this way, now they know they are not alone. Maybe someone can relate and gain strength or comfort, this is my hope! 

 

 

It is very late right now. Can’t sleep AGAIN! It is dark in this room and it is dark in my head. Too much thinking, can carry you away.

I am so overcome with scary invasive thoughts.

I don’t want to hurt the ones I love. I know from experience that distance helps the pain, lessens it. My father died recently, I was heart broken. So much time lost. We were not as close as a father and daughter should be, but it still hurt my heart. When he died, because we were not close, it did help make the pain “bearable?” in a way. Reflecting on those thoughts, I feel that I should just disappear, now, before it’s too late. Die alone and limit the hurt.

How can I live and die knowing how much pain will be felt.

How can I live and die without the ones I love.

A stalemate, an impasse, trapped in a fucking corner with no way out.

Trying my best to stay happy and positive, utterly failing these days.

Knowing this disease has changed me, so very much, angers me. My mind does not match my body and I find this frustrating, to say the least. I want to do, but can not. I used to be up for the challenge, find the strength to not let cancer run my life and rise above it’s power and make it my bitch for a while. I have lost my inner warrior and am lost without her.

I am suffocated by fear and tormented by this disease everyday. I am struggling and losing the fight. I am disappointed by my weakness and terrified of what these thoughts will do to me. I know that I am in a good place; cancer has not taken over my liver,lungs or brain. But the reality of my disease is too much for me. The treatment. I have only begun my 2nd type of chemo and am not feeling as strong as I did with the first one. What does that mean? My goal has always been at least 5 years, but I fear that something inside me knows better. This last progression and endocrine resistance means my disease may be stronger than my desire to live. I will never have closure, never stop treatment, never have a cure. For the rest of my life I have to “wait and see” chemo after chemo drug after drug only to get worse and then die. This is a maddening disease I must say. I want to live and do so many things, but already I feel this cancer has taken so much of me. I feel like a shell, a bag of slowly rotting meat. I am tired. My body is in pain. My soul tortured. My mind shredded. My strength worn as thin as my optimism.

Can I really do this? Why do I feel so weak in this fight right now? This is probably the lowest I have ever felt during these past 3 years. Carrying around the fear of death hiding behind every C/T scan, never knowing when it will happen but knowing it is coming!

I do not want to die, I am terrified of the end.

Why am I giving it so much power over my life lately?!

I vow to find myself, to rise and dust myself off! To take in a big deep breath, smile and valiantly take on another day living with cancer!

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How the mind changes…

This post is definitely a ramble, but hey the title of my blog already warned you!!! 😉

Things that are important now differ from what was important before. Sad but true story- I was driving from my friend Jenn’s house one day and decide to try a different route home. She hadn’t lived their very long and I was testing drive times. Anyhoo…along this particular street is a cemetery, now I know the cemetery had been there but here is what is strange. They had a big advertising sign out front featuring a grand opening of their brand new crematorium! I got (truly and sadly) excited and slowed down to read it saying out loud “ohhhh that’s cool, I need to remember this place… Just an example of how different the mind can change after a cancer diagnosis.

Cancer can shift your outlook forever and in a deep way. You look at things differently, life is not what it used to be, what was important is not anymore and what we barely noticed is most prominent. we speak about sickness and death in almost a lighter way too, trust me this makes people VERY uncomfortable.

Funny thought, we complain about what stupid things non-cancer people say to cancer peeps but seriously think about some of the things we cancer people may have said that shock, hurt or make someone feel bad or even stupid. “I am going to lose my hair!”  “I am so tired!””Well, I am dying!” “It’s not curable!” “Fuck neuropathy!” “I am in so much pain!” “I feel sick everyday!” “I hate chemo!” “I signed my end of life papers!” “I am glad to hear he/she was cured, but that is not the kind of cancer I have!” “Cancer sucks!””Don’t you hate it when you get diarrhea from chemo!” “Anemia sucks balls!” “So I keep puking my guts out…” These statements are not setting our loved one up for great success! It would hurt my heart if I had to hear about the terrible things my person was going through! Then, it could also be really annoying, who wants to listen to someone ALWAYS telling someone how horrible their life is!!! Just sayin’ we need to recognize my fellow cancer army , we are as annoying as they are!!!!! 

We are in a different world they couldn’t possibly understand and we need to cut some slack! They are just want to be reassuring or supportive and they don’t know quite how to do it! Try to remember what we would have said before the diagnosis. I would have said more than half of the things people have said to me! I may have already inserted my foot into mouth many times…oops.  No one really understands until they have been here/there, whether as a patient,sister,husband,friend it is hard to not be offended or roll our eyes.

One thing for sure, cancer people can make non-cancer people feel uncomfortable and annoyed and non-cancer people can offend and annoy non-cancer people!

Just love one another and be patient and kind to all!!!

Much love Krista xox

The Phoenix

Nor shall this peace sleep with her; but as when
The bird of wonder dies, the maiden phoenix,
Her ashes new create another heir
As great in admiration as herself;
So shall she leave her blessedness to one,
When heaven shall call her from this cloud of darkness,
Who from the sacred ashes of her honour
Shall star-like rise as great in fame as she was,
And so stand fix’d.

I have always been fascinated by this mythical bird and it’s magic. Always felt, no matter how many times I may go down, I will regenerate and rise up fierce and strong. Now more than ever, I need this magic.

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Life with Chemo, a helpful list!

So there are many kinds of chemo and how chemo acts in each body is personal to everyone, this is what I have learned so far! Side effects that I may have, someone else may not have or it may be better or worse. A/C chemo was horrible, in a different way than my Paclitaxel is affecting me.

But here is what is common during chemo- we all have bad days!! During those days we need to be as comfortable as we can manage! Let go of the housework, kids, husbands, friends and family obligations, focus on you and feeling better! Television, movies etc. have placed a lot of undue stress on us who are going through chemo. They paint a picture of energetic,healthy, happy people that is unrealistic. We end up feeling guilty and worry ourselves that we can’t be like the people on television! I am here to tell you, IT IS OK! OK to feel shitty, tired, sick! Because that is what you are supposed to feel. We have been given toxic venom that bombards our bodies and kills without discrimination. It lacks the intelligence to chose between good or bad, it’s purpose, to destroy!!!

Here is an essential list of things chemo patients need:

  • A handheld fan
  • Comfortable clothes
  • Body lotion
  • Biotene mouth spray-so great to keep your mouth moist and fresh
  • Collagen in any form-for your face, chemo ages the fuck out of us!
  • Candy
  • Water-lots and lots drink it!!!!!
  • Tea
  • Slippers that come on and off easy or cozy socks, my god I love a good pair of cozy socks
  • Body spray-to smell better for company
  • Pain meds
  • a good book/magazines
  • puke bucket and wipes
  • Netflix
  • a heating pad-so love my heating pad!!!
  • Cozy pillow and blanket
  • Tablet/laptop/phone
  • a sleep cap/scarf-if  your bald
  • a little snack basket with crackers, ensure shakes and protein bars
  • CANCER CARD- a must have for all chemo goers!! Use it just enough, you don’t want to wear it out 😉
  •  child slave labour at your beck and call to replenish or fulfill yours needs

So that is the list I have compiled. Chemo sucks always! But these items can really help make your time spent in hell a little easier! Nap as required. Remember to move a little too, the body needs movement! Move to the couch for a change of scenery or move to the bathroom to take a bath maybe even move to the kitchen to make a tea.

Try to eat a little something every few hours. It can really help you feel better, even if you think you don’t want to eat. Stay away from foods you really love or want to eat after your treatment is done! It took me a while to want to eat bagels again. Taste-buds do change, sometimes you can’t taste anything your eating or things taste strange. I remember my A/C chemo, I cried eating Kraft Dinner, KRAFT DINNER! I couldn’t taste it and I cried! I stuck to things I had no expectations for but really, so sad that Kraft Dinner was ruined by chemo.

I also found that if I was having a really bad day and was stuck in bed, having my littles with me to watch a movie most comforting.

I also found a group called Chemo Angels! This group designates a volunteer “angel” to you and you receive letters, cards, encouragement and support from someone who knows and understands what you are going through. They just give an extra little pick me up during this hard time. Who doesn’t like getting a card in the mail!! If you know someone or are someone going through chemo or maybe even volunteer (they are looking for people to make a difference, I happen to know a few of you would make excellent chemo angels!), please check out their website and sign up! They are a wonderful and uplifting group I am so happy to have found!!   http://chemoangels.wixsite.com/chemo-angels-1

I hope you have found this to be helpful and I hope your bad chemo days pass quickly!!

Stay strong you got this!!!! Love y’all xo

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!!!!!

 

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!