Wait & See…

One of the most frustrating things about this disease is finding answers to questions. The standard is always “wait and see” and I do understand this although I hate it! I have struggled with it since the beginning. I am a very impatient person and when I want something I want it now, that includes answers to questions!! The struggle is real!

When something changes during treatment it is hard not to think it is related to the cancer. I could probably write an entire post on this subject as it is a recurring theme among all cancer patients! But, for now, I will focus on the wait and see.

Right now my primary breast tumor has changed. I have a lot of pain in the surrounding breast tissue and the tumor hurts to touch. The mass has also become very hard and my already incredibly shrinking nipple has become even smaller! This is important because after 10 rounds of Taxol, this is new, these are symptoms I have never had! Anything new sucks and can be scary really! Some lead to nothing, others are significant in negative or positive ways.

I am trying to focus on positive things! I think that maybe the tumor is becoming scar tissue and dying! That is my hope and prediction! I love being right in the good times lol My onc is ordering a CT a little early and is scheduling it for mid-late March.

So again, stuck in limbo and waiting to see!

Cheers Fats!

ugggg more Taxol!

So, first things first! My cancer has not spread woohoo!!

However, it has remained the same, so!

As strong and confident as I went into the appointment with the plan of stopping Taxol, my doctor would like me to continue with it (he is an amazing salesman really, so good I barely put up a fight crafty crafty Dr. Chang!!). He explained that my list of treatments are limited so if this is working, stay the course.  If I was to stop and change, there are no guarantees the next will work or have less side effects. He also explained I may be giving up longevity, possibly years of life. With arguments like that up his sleeve no wonder I caved so easily lol. I have to admit though, I cried when he said it, for a couple of reasons.

  1. Acceptance of my reality
  2.  More Taxol
  3.  I may feel like this the rest of my life
  4.  Death is real

So hopefully with an aggressive palliative plan my journey with taxol continues tomorrow!! Wish me luck!

Maybe a new hairdo will help!

Love you all xox

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

Time to flick the damn switch!!

OK so I am sorry the last post sounded like I was ready to slash my wrists! The down parts are so much a part of this journey, a big part, so I feel it is important to share those as well. If someone can relate or gain support because they have been there, then it is worth posting the dirty underbelly!! (warning: I will defo be posting more negative’s at some point or another, just being honest 😉 ) I had a 3 hour reflection while I sat in my chemo snow globe today!

So on wards!!!

The people I have in my life are…I don’t really know how to describe them and how they impact my life. I AM lucky so lucky to be surrounded by the people I call “my loved ones”. They are not always blood related but imprinted in my heart and soul. I want to thank you loved ones, with all I have, thank you! I am blessed beyond words! Know how thankful and indebted I am to your unwavering support! I love you!!

I have been thinking a lot about how lucky I truly am, so silly of me to not focus on the great things and let the nasty cancer get so much control!

The past month or so (or more) has been tough and yes my warrior needed a break, it has been almost 3 years she has been at the keel, navigating and keeping us strong, not giving up! I can feel her strength building and her fire radiating, she will soon be ready to break free and The Phoenix, I will rise!!!!

 

I am Krista, not 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!