Thursday, 20 June 2019

Wanted: Worry Free VayKay

I need a vacation. I mean a real one. One where my hubby and I aren't frustrated or arguing with staff of the resort. One where things go smoothly. I would love it to be a location that we could take the kids with us but still have the opportunity to have couple time daily. A place to have drinks on a beach or by a pool. A place to swim and laze in the sun or dance in the rain. A place that is quiet at some places for relaxing and that is bouncing at the places you want to party.

My head is aching thinking about this.

I need a vacation where my only concern is getting the children to listen and go to bed before 9pm. Where our only fear is the kids waking at 6am. Where our only problem is having too many places to choose from to eat at meal time. A vacation where staff don't ignore us, where they are happy to talk with us and make sure we're pleased with everything. I need some place that will make sure we're always happy. I need a place that is willing to bend over backwards to ensure that we have anything and everything we need, no bickering with us on the issues when we present them, just fix the issues. Or better yet, don't let the issues happen.

I need a place that when we get back I won't have to keep repeating the response "The kids loved it" when people ask how it was. For the real response is that the time was heartbreaking and not relaxing. We made the best of it. We tried to put on a happy face for the kids. But that's not the responses the one asking wants. The kids were content and at least we have that, so that is what they are told.

It's also required that the timing work with my treatments... I am getting behind on those enough already with having pneumonia twice in 6 months. So this is getting more difficult to think of a way this could ever work. Money is too tight for now, but we'll try to save. Maybe some miracle will happen and we can go sooner. Some major sale happens, perhaps. Until then, save, save, save. It's better to set aside five dollars and slowly make it than to not put anything aside at all.

But I really need a vacation.

Friday, 28 December 2018

Bell Tolls for Thee?

There's a tradition at most chemotherapy wards, the ringing of the bell when an individual is completed their chemotherapy regiment.  Those in the ward clap and cheer for the ringer of bell, they whom stand shaking the instrument furiously.  They announce that they are finished with this floor, hoping to never sit in one of their chairs or lay in one of their beds again.  Nurses smile as they say goodbye, there are the playful quips of "I hope I never see you again" or "If you come back you had better be lost".  Hugs and happy tears are shared and the person leaves.  Today this happened twice while I was in the chemo ward. I had another person ask me how many treatments I would have until I was finished, indicating the recent bell.  If I ever ring that bell it will not be a celebratory achievement.

If I ever find out that there is no further chemotherapy treatments, if I hear that that was my last one, that means that the cancer has spread too much, gone too far, and that my days will be literally numbered.  Ending treatment when you are living with cancer does not signify returning to the life one had before cancer, it means the end of life.  Ringing the bell at the chemo floor for a terminally diagnosed patient is chilling not thrilling.

Fortunately there have been many advances in treatments, even within just the past year, let alone decades.  I am currently on a trial for my specific type of breast cancer, something that wasn't even thought of ten years ago.  This could prove to be the first targeted treatment for my cancer type ever.  The first!  Before this, it was only "blanket" chemotherapies available for me, ones that were available for most breast cancer types, but no targeted treatments that were specifically used for triple negative breast cancer.  One of the best things I heard when talking with the trial nurse was that I get to keep this trial drug as long as my body can tolerate it and it is working.  I have something I can use until the cancer adapts (if it does, and most cancers do adapt over time).  This could take months, or years, or even longer to become obsolete for me.  There's a chance, no matter how slim, that this could make all the cancer become too small to seen in scans.  A chance that it could put me in remission.  I've lost my hair to this treatment but if it means I get to stay here, I'll take it.

I'd like to note that even if I get the chance to be NED (no evidence of disease), I'll not be ringing the bell after I am told I get a break from chemotherapy.  The bell is for completed treatment, not for breaks until the cancer returns.  I also would like to say that there is genuine happiness to see people able to say they are hoping to never return to the chemo floor. I wish no one had to ever step foot in there to start.  I will still clap for those ringing the bell.  I will smile as they scan the room.  I am happy for them, but hope I never stand in their place holding that instrument.  I do not want the bell to toll for me.

Thursday, 11 October 2018

Thanksgiving post - a little delayed

Thanksgiving had been last Monday, here in Canada. I was filled with turkey on Sunday and we rested most of the actual holiday. I was messaging someone that I realized might not have seen my posts about cancer progression and from that conversation came something I thought would be a good blog post.

I hate cancer. It will one day take me from all I love, it has taken loved ones from my life and from the lives of others.  For now, I am here, so I can say one of the oddest things to ever come from me: there are ways I am grateful for my cancer. I'm not happy I have it, I'm not thrilled that it is trying to spread, but if I had never had cancer there's a few things I wouldn't know or have.

Because of my cancer I have many friends across this nation and the world that I would likely have never even known existed otherwise. I have had the rare and wonderful opportunity to meet others with various cancers and share with them our laments and our joys. I have several friends that do not have cancer but because of the way it helped connect us, we now have a friendship that I could not of dreamed of finding.

I know how much my husband values me. There's always tests in a relationship, there's stressful times and many tribulations. Despite all the horrors we've faced with cancer, my husband cares for me, his love has been unwavering. He shows me daily that he loves and cherishes me.

I've seen the kindness of strangers. I have been able to witness and experience the love given by someone that does not know more than your name and maybe a brief account of your affliction. Love coming from someone that has no connection going in is beautiful and becoming more unique. Although in my mind, if someone needs and you have or can help then you do, it is not the norm. That is something that I have slowly come to realize, but seeing that there are still some out there that feel the same way warms my soul.

I know that I am capable of being stronger in spirit than I would have thought. There have been times that I thought of the next treatment and my shoulders would drop, my head would hang heavy, and my breath would be no more than a resound sigh. There were days that I wanted to say "no more", just stop everything because the feeling I would have to endure was abhorrent at best. But I did take that treatment. I did bare the effects and make it through to the better days. Part of it was for me, but part of it was for my family and friends. I'm not saying it to place any weight on their shoulders, I'm saying it because I know if our roles were reversed and I was watching them deal with this, I would hope that they could find the strength to hold on as long as they could, to stay in my life. I am not ashamed to admit that I selfishly want my friends here to talk to. I have lost so many to this date that I do not want to hear the words "they're gone" one more time. I do not want them to hear that I am gone, either.

I will also admit that some days I do wonder if I am becoming more of a burden with all that has happened since the car collision in 2008. I have become limited in physical capability due to the MVA, something that has made dealing with cancer worse. If I was a fully functioning adult there are some things that would be easier with this cancer life. I still continue, however. I do what I can and try to accept what I cannot do.

I hate cancer, I would not wish it on anyone. I cannot deny the good that this mass of unruly cells has brought into my life, though. I am grateful for the lighter side of this experience, but would still like it if one day I was told the cancer was irradiated or would be forever manageable from that day forth.

Friday, 27 July 2018

Chemo Shower - Brought to you by midnight wine

Last night Mike and I had some merlot and late night nachos.  The following idea then came to me before we headed for bed: chemo showers.

When people are going through a huge change, there's sometimes a party to help the person/people out.  People bring gifts that will assist with the change.  Baby showers, you bring diapers, clothes, formula, creams, toys, or baby furniture items to help the parents.  Wedding showers you give small appliances, gift cards for renovations, silverware, dishes, china, or whatever the couple has asked for help with.  So what about when you're about to not be as functional because of chemotherapy treatment?

You have found out you will be on chemo.  You get a couple of your best friends together and pick a date to have a chemo shower, either before the first one or after you have the first treatment for a better idea of how it will affect you.  Either have the party in house, at a friend's, or your favourite restaurant.  Decorate with things that make you happy: your favourite colours, your favourite quotes, your happiest photos, pictures of kittens, whatever your desire.  People bring gift cards for food, coffee/tea, takeout restaurants, or vouchers for cleaning, childcare, or drives to the hospital/grocery store, or self pampering things that you might not be able to afford like a massage (even just a foot/hand/scalp massage), gel nails, gift card to your favourite store to get movies/games, or a pricey restaurant that you adore their desserts.  The theme is always support and joy.  This is a great time to say exactly what you will need help with.  Make a list of needs and post it on the wall (make it fun with a poster board and make it a "pin the chemo bag on the thing they will help with" game), let people sign up for what they can do.  Susan can help watch the kids for the January 4th chemo treatment.  Jack can come mow your lawn on May 16th.  Paul will take the kids overnight on October 12th so you can have a night to yourself when you are most likely to feel like going out for a night.  Janice will drive you to your treatment on February 27th.  Chris will take you to the movies on August 19th for a fun afternoon.  Think about not only your treatment days, but the days when you are feeling a bit normal, you need to have a life and have fun.

So that's my thought.  Brought to you by fajita chicken bacon nachos and merlot.  #Omnomnom

Wednesday, 11 July 2018

Ode to Today

I am exhausted, I am stressed
My mind is spinning, the house is a mess.
Cleaning is not happening, a guess?
No motivation is currently possessed

I must nurse our canine
Corral the kids, protect the felines
“Don’t hold her like that” is a common line
Ask me how I fare? “Oh, fine”

Chemo to take, and caffeine to think
Want to just slip in bed and sink
Hide in the covers, gone in a blink
Forget, disappear, let my mind sync

Clothes to fold and put them away
Stand looking at the room with only dismay
Appointments, calls, food needs made
Close my eyes and heart to today

I cannot feel outside of the void
Different methods with, I have toyed
The result the same, still annoyed
Throw on a smile, a worthy decoy

Do what I must and continue
Trudge, walk, crawl, roll through
Tomorrow may be different, true
But the darkness still floods deeper in hue

Monday, 9 July 2018

Moments of Thanks and Inspiration

I'm in a bad spot right now.  To help avoid a "downer" blog - which seem to be too often lately - I'm taking a moment to try to think of a lot things I'm grateful for:

  • I have my soul mate as my spouse. Mike and I honestly say the same thing at the same time quite often. We can finish sentences, we want to cuddle at the same time, we can be apart or do different activities and not feel left by the other.  I can never be grateful enough for him.
  • My talents. I love that I can do a lot of things on my own. I do wish that I could do them more often but that's leading into some of the dark stuff, so let's avoid that part. I love that I can draw to express myself, I love to write, to do woodworking, metalworking, I can build things with my hands with many mediums, and love to sing.
  • I have some pretty amazing friends. Friends that will do whatever they can for me, that go out of their way to see me smile, from watching the kids to sending surprises that mean a lot to me in the mail.
  • My kids are sometimes exasperating but they are also a source of happiness. I get hugs, kisses, and "I love you"s often.
  • I'm able to still do some things, even if I cannot do everything any longer.  I can still feel slightly useful as I am not bedridden.
  • My cats and dog love me and give me cuddles. 
  • I have a chemo regimen that appears to be working.
  • I apparently inspire people to do good.  This one I want to talk more about for a second:
I have had a lot of people tell me ways they were inspired by my actions.  It has been from being their new selves after surgeries or other issues that made them have scars or marks that make them appear different than the average person to stepping up and helping another person.  One person stopped worrying about wearing a prosthetic breast because she saw me freely walking around with one breast (and the remaining breast made it extremely obvious I only had one).  In relation to that IDGAF attitude, others have stopped trying to hide scars or missing hair, etc, and told me it was because I gave them the inspiration to just care about how they saw themselves instead of how others might react.  Some have told me they cannot believe the amount of things I help come to fruition.  I helped save a retreat, I helped make welcome bags more full than they would have been, I organize events with little effort.  To me, it is little effort.  I can plan these things easily.  I know enough about Excel and Word that I can make things very simple.  I have an ancient version of Adobe Photoshop and I can work that thing to my needs extremely easily.  If I am going to be an inspiration, I want you to take away one thing from me.  This is why I do what I do.  This is what makes me want to do things for others, whether they know it is me or not:

If something needs to be done, do what you can.

Change does not happen by shrugging your shoulders.  Help does not come from twiddling thumbs.  You cannot help if you are too worried what others will think of you.  Follow your heart, it is speaking to you, it twinges when you know that you can do something to right a situation.  Be selfless sometimes, think of how happy you can make someone with something as simple as a small, inexpensive gift or by doing a selfless act.  Share your friends' fundraising efforts, share their attempts to go outside their safe zone, share their events, share their triumphs, help where you can.  Can you imagine a world where everyone tried to help when they knew they could?

Thursday, 28 June 2018

Reality of It

A lot of people do not understand my life. They don't understand what is happening largely in part from the word “cure" going around the interwebs so often now. Let me break it down:

My cancer is now incurable. That is the opposite of curable, so you're aware. All your fucking miracle cures, secret recipes, wonder drugs, etc are not going to change that.

I live in perpetual fear that the pain I feel is the cancer growing or spreading. Once it stops responding to treatment, it will grow, it will spread. It will go to my brain or my liver or my lungs and take over. It is not “being negative” or looking to the darkside of things, this is the nature of my cancer.

My cancer is aggressive. That is good and bad. Aggressive cancers grow and take over quick (the bad part). Aggressive cancers also tend to respond well to chemotherapy (the good part). Chemo tends to attack fast growing cells, that's why aggressive cancers sometimes respond well whereas slow growing cancers can be more resistant to chemo.

Since my cancer is aggressive, my prognosis could change in a heart beat. Literally. The cancer is on my blood, my heart is pumping it around. One day I could be fine, the next day it may have spread.

This is my reality. When I say that I needed to start a GoFundMe because I want to not leave my family in debt and want to do fun things with the kids, I'm saying that because I really am on the precipice. I could fall in any moment. I don't want to die. I want to see my kids grow up. I want to see my 25th anniversary. I want to have a 40th birthday. But that might never happen.

I'm writing this from a bed in emergency, waiting for a ct scan because my cancer might be moving and we're trying to figure it out. Life changes in an instant. I'm trying to make my life last as long as possible. But cancer is as much of a bitch as I am.