Tag: chemo

Mind over mammory: Mastectomy

Second verse, different from the first! Another post to help those who are going through a mastectomy but this one is more focused on what your mind might be going through and a couple of tips.  This is just my experience and everyone is different.

My surgery was unexpected, as I said in my Bye Bye Boobie post, I was always told it was too late for surgery so in my mind a mastectomy was never in my future. As always with this disease, it is wise to always keep your mind open because anything can happen. It is so unpredictable and always ongoing and growing. Remember nothing works forever but also remember to enjoy the “pauses”! As the disease progresses treatments get harder and harder. I think that was a part of my sadness with this surgery, new treatment because of progression. Every time this happens I am reminded at how little control I have and my mortality is put in check.

Psychologically this is a hard surgery, no one looks forward to losing a breast and I found that the time before surgery was the hardest, I thank God that I only had a week to think about it. Honestly, it was a very long week. I also highly recommend you stay away from googling pictures, trust me from experience. Two days before my surgery I was trying to find pics of women that had their surgeons manipulate “fake” cleavage from breast tissue but was only horrified and scared to death of what I was going to look like. I swear they only post the most distressful pics out there!! DO NOT look to the internet pics for reassurance!!  Try not to think about what will happen or what it will look like after, it will just add unneeded stress to your recovery!  The reality is you are losing a breast and your chest will look different, accept it and it will make the before and after easier. Focus mostly on your health, there is a reason for this removal, it will bring you life! My biggest advice, be brave and stay strong, you will get through it!

As I said before the waiting is the hardest. In my opinion  do whatever makes you feel better, fuck it, this is hard, so hard.  Get a pedicure before you go in, go out for a great dinner with friends and anything else that brings you happiness.   My wonderful friends helped me get a boudoir photo shoot. This was so amazing and I highly recommend it. It was such a great way to have some beautiful photos taken before your body changes. I decided to go tits out and give my husband some shots to remember my awesome boobs! I also decided after 3 years of fighting this bitch, to take the time to relax and recover at my own pace! No guilt just recover in peace!!

Getting out and about was a problem I didn’t think about beforehand. I couldn’t drive, I have a manual car and my mastectomy happened to be on my gear shift side. This was a big challenge for me, not being able to even leave the house if I wanted to, at the mercy of others but not wanting to bother anyone to take me anywhere, I already feel like a giant burden and I didn’t want to be a bigger one. I did feel a little isolated and lonely but sadly that already comes with the disease.

I also found it was difficult to look at my chest, avoiding a direct long look, not wanting to see it but slowly trying to accept the unavoidable reality.  I would take quick peeks every now and then, and still every time I was surprised by what I saw, that’s not me is it, FUCK! When I put my hand to my chest, so familiar it used to feel. As it went closer and closer with anxious curiosity, expecting to feel my breast, it hesitated as the unfamiliar empty space was entered. This empty space… it means again cancer is winning, for now! it means I feel less than a woman, again! it means forever I will have this emptiness.

So because I only had one boob removed, my remaining boob still needs a bra… I left the house on a couple of occasions feeling awkward. I did not buy anything to wear post surgical because I really was not able to think about the after and partly because I didn’t know what the hell to buy. My surgical site was so tender and I couldn’t wear anything I had at home so off into the world au naturel it was! My one side obviously empty and the other boob flapping in the wind. I felt obvious and vulnerable, again cancer announcing to the world, this body is my bitch! Now here is where planning ahead would have really come in handy. There is a website for knitted knockers! It takes a little while to get them so I suggest ordering before you go in for surgery. These things are amazing and free!!!! Check out the website for these awesome confidence building boobies!!!  http://www.knittedknockerscanada.com/

It has been 3 weeks now and my physical healing is going great! My mental one is still in the works but it is a lot easier to accept now than it was, like anything in life change needs time and time heals! I bought a bra and have stuffed it with socks lol! I am still waiting for my knitted knocker. I have also looked into prosthesis. I have heard they can be uncomfortable to wear and are quite expensive but do whatever you need to do to feel better!  Ontario does have a grant for a chunk of the cost if you are interested here is the link  https://www.ontario.ca/page/breast-prostheses-and-artificial-limbs

I am irritated about future clothes shopping! Trying to figure out how to camouflage my cockeyed chest for the rest of my life. I have already had a lifetime of trying to conceal my fat and now I have to fabricate the illusion of “normal” breasts!

I wonder if my golf swing will improve! 😉
Today I will own it! Battle wounds and battle scars, we all have them let us not give them the power to define us or rule our lives! Whatever life throws at us remember just carry on my soul sisters and brothers we are alive to fight for another day!!!

Laughter, life and love to all xox

 

 

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Taxol uggg

So I have decided to do a post on my experience with taxol. When I was told about Taxol, I was excited, “this chemo has so little side effects”, “minimal hair loss, vomiting etc.”. So since I was such a rock star with my A/C (adriamycin/cytoxin) chemo, I was expecting a cake walk.

Let me explain a little about A/C. So one of the nicknames of adriamycin is “the red devil”! Most people have terrible side effects and regret doing this course of treatment because it is so hard on the body. I have read nightmare inducing stories of these brave ladies. So after I started, I was expecting the same to some degree or another. What happened surprised me. Yes, I felt terrible and the nausea was ever lasting, oh and the anemia was like damn!!! No one knows lethargy like a chemo patient, just saying, it is on a level only those who have done will really understand. But, yes, feeling shitty but, it didn’t stop me! I took the few days usually 2, to take it easy, relax, nap and recover. That was all I needed! I would walk my dog 3 to 6 times a week at the dog park for at least an hour. I shopped, cooked, went to parties, exercised and lived. Put the kids in the car and drove to New Brunswick by myself. I was able to live and enjoy life even while I felt terrible.

This is why I was so excited about taxol, I thought, if I did so great with the A/C, doing taxol will be like doing no chemo at all! Boy, I was so wrong! For whatever reason, my body, mind and soul have been through hell and back with it!

At first I thought I was just a wimp, not strong enough, questioned myself with WHY? These past 5  months have been the worst cancer time I hope I will ever have to go through. I still can’t understand why my body has such a difficult time, I probably never will understand it.

Some of the side effects I have had are: extreme bone pain (writhing and audibly moaning from the pain), daily muscle pain, tiredness (again words can’t explain how bad it is), dry mouth, a few mouth sores, dizziness, nausea, hair loss and neuropathy, pain in legs, hands and feet oh and again weight gain (this is so annoying and I am so over it already lol).

I am doing this entry to let others know, it is normal and ok if you have or had a hard time with taxol. It can be horrible!!! I actually asked my onc if we could do A/C again, he was surprised and said in his 20 plus years in cancer, he has never had a patient ask to do that again! (His answer was no, btw, I was very disappointed 😦 to say the least)

So, I have decided to stop this taxol. Regardless of what my CT scan reveals, I know I can not continue this treatment. If it is working, the plan WAS to continue to do it until it stopped working. My doc has a patient that has been doing it for  years. Holy shit! Lucky her! I guess she does not have the same experience as I do with it.

Here is the reason, as most of you know, my cancer is not curable, so the point of treatment is to try to control it so I can keep living. The point of treating any terminal cancer is to balance longevity of life with quality of life. So right now my quality is so low, I might as well die. I know that sounds dramatic but honestly, I can barely get up to pee, never mind doing anything else. At this point, I don’t even care if the cancer is spreading, I need this to stop! I have a husband and 2 children, awesome family and amazing friends that I would love to continue making memories and enjoying my life with. Plus my bucket list! I have not been able to do any of this during these past months, this is not living, it is tormenting. I have cried almost everyday. So with this decision comes new hope and an excitement in my body that has not been there since September. I have an appointment in 2 days to get my results from the CT and the new plan will begin! I will give you all an update when there is news!

For now, I hope I have given anyone that has had a hard time with taxol a little hope and validation, when I finally found some people that had a similar experience as me, I did! If you are doing it for a scheduled amount of time, hang in there and you will get through it! You are worth the fight and it will end my friend!!! If you are a person such as me and there will not be an end, please consider changing you treatment, do not continue living in hell, you have choices! As soon as I said it out loud and committed to changing, I automatically felt better!

Love and laughter to you all!!!  Krista xo

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!

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