Ringing the bell…

As a cancer patient there is a tradition when you finish your treatment, you ring a bell. Signifying the end of chemo and your new life “cancer free”! I have a few thoughts on this subject.

This tradition can be extremely emotional. With the end of treatment, it is a bittersweet moment. I know that can sound weird but it really is. After you are diagnosed with cancer, you are bombarded with endless doctor appointment’s, scans, blood work, surgery, oncology, radiation, chemotherapy and the list goes on. As you go through the toughest time of your life, your family, friends and support team are there for you every step of the way and drop off food, cards and visits. Your world is upside down and you have never felt so sick or scared maybe a little lost.

As the treatment ends so does the hustle and bustle. And with that last treatment comes the bell. As you pick it up, a rush of emotions comes over you. Happiness, a little peace but also fear and sadness and yes the lost feeling again.  Now you are CANCER FREE, so just continue your life as you left it before the diagnosis. The fact is it is one one the most difficult things to do. Also, the fear of cancer recurrence can be terrifying and is a very real possibility for most. I understand what they have gone through and my hope is that they know, some of us understand and get it. Keep fighting and live as much as you can! Do not let the fear run your life, you did not go through all of that shit just to crumple and let cancer win! You are more than that and deserve happiness. You have walked the line between life and death and have come out the other side, embrace this gift! Never waste it!

On another note, that stupid bell!!I remember when I did my first chemo, sitting in the suite and hearing the bell from time to time. I was truly happy for them clapped and cheered as loud as I could! But, I was also sad and jealous, I thought, I will never ring that stupid bell! My treatments will never end! Stupid fucking bell, stupid cancer! I mentioned this to my nurse one day. I told her I was sad about never having the chance to beat cancer and ring that bell! She said, “Well you will ring that bell! Just because you are not cancer free does not mean you can’t ring it!” So at the last appointment came and finished, I walked up to the counter and picked up this “bell”. This bell that held such promise and hope, the sound of the end of chemo (for now, at the time, for me) I thought I would pick that bell up and ring the shit out of it, run around a little ringing this bell as hard as  I could, I may never get this chance again! BUT, as I picked it up, I felt small and humbled and it felt big, it was so strange. I felt respect for all who had rung it before me and could feel it’s power. I cried when I rang it. It was a special moment!

After however lol One of the nurses gave a “typical” “standard” little package for finishing chemo. Pamphlets and books all under the topic of “Life after cancer”& “Next steps in your cancer free life”. I was immediately offended and bothered by this delivery. What the fuck! I said “well you can keep this package, I have no use for it, thanks!  My cancer is not curable”. I didn’t want to sound rude or ungrateful but I could not control myself. In my head I said, “If you took the time to read my file or treatment page right in front of your face, you would know that, bitch!” She looked at me a little embarrassed and said, “Well there are a lot of good tips in these and it can still be really useful to you.” Let the record show lol, I have never once used anything in that package to this day! It really wasn’t her fault, she just knew it was my last chemo, I do not hold it against her in any way, she was really nice. But damn, I was pissed. And it ruined my moment, oh well!

As I started this new chemo in September, and learned that I would be receiving it until it stops working  just to hopefully move on to another, I thought about that bell. And as I hear it from time to time as I get my weekly treatments, I wonder if I will ring that bell again.

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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!