The World to Date: A Rant

A lot has been happening over the last few months. The chemo over the summer did not work. We discovered that I had tumours in my brain. I had radiation, another chemo, the pneumonia twice in a row. I keep hoping to go back on chemotherapy and start shrinking the tumours in my lungs, liver, bones, and the mass on my chest wall. However, I keep getting delayed, and I have been delayed, again. My oncologist is nervous of a tremor I have in arm and is going to have my head scanned to see if there is another tumour in my brain. If there's one tumour, it may possibly be treatable, if there's no tumours, great, if there's mulitple tumours, it's likely not treatable and all chemotherapy will be stopped. Treatment will have come to an end. I need to wait on a scan to know if I have the chance to continue treatment or if this is it.

Because it has come to this I have decided to make a huge fucking rant post. My sister said to me last weekend she rarely hears me complain, well, I'm about to.

I'm frustrated that Mike and I always seem to get the shaft and have to work triple hard just to get what others are given. Things like the wish vacation that we were sent on last January. Many were so happy for us and we were so excited. The entire week was stressful and upsetting for Mike and I. Yes, we can easily say that the kids had a blast, they did not have to deal with all the upsets that we had to constantly argue about, the problems that kept arising over and over again. The most relaxing time of the entire vacation for Mike and I was the flight from Turks and Caicos to Montreal.  Everything else was a aggravated, disappointing mess. I was in tears there more than once. Not a worry free vacation at all.

And it's not just that. Constantly we go away and we end up with the hotel room that is falling apart. Our plans are destroyed and given no compensation or remorse from the parties involved. Oh, sometimes Mike and I can complain to the point of a slight rectification, but only if we're willing to fight, and it's always a fight.

I might be finding out tomorrow that I'm at the end of the line. I might not get to ever try to go on a real worry free vacation with my family now. I might be preparing for the "lasts": the last Christmas, the last birthday, the last summer vacation, if I haven't already passed that line. And I'm angry. I don't want it to be the end of the line. I don't want this to be all that is available, but it seems to be the way our lives go. Yes, I probably sound like I'm whining, but right now I don't fucking care.

I know, too, that I have had small fortunes sent my way. I have several friendships that have developed due to cancer that I would not give up for the world. Whether we speak only on Facebook or in person, I cherish these friends, dearly.

Honestly, I want to type more. I'll have to do a continuation. I'm too sore and the painkillers are not kicking in all the way yet. But for now you have my bitching notes. And I'm going to remind people that I don't want to respond to 500 "any news" messages, tomorrow. I post stuff when I'm ready

Break Down of Stage 4 Breast Cancer a la Julie

A movement is starting to trend for metastatic breast cancer. Many of us are beyond frustrated with misinformation and ignorance of metastatic breast cancer, and breast cancer in general. Facts are now being spread to help people realize that any early stage breast cancer can develop into stage 4, even stage 1, we just don't understand why or how. This has been "triggering" some, apparently. I'd try to empathize but this is reality, you don't get to keep your head in the sand. No one wants an early stage breast cancer survivor to find out they're now metastatic, but the truth is 20-30% of them will. And that doesn't even include those that are diagnosed stage 4 denovo (from the start).

Being stage 4 has not just flipped my world, it's made a lot of it crash and burn. I've lost my hair 3 times now as stage 4. Last night I went to wash my hair and it came out in clumps from the radiation treatments for the tumours in my brain. I looked like some massacred doll when a 3 year old found a pair of scissors. Yes, it's "just hair" but having hair makes you feel a little normal for that split second that you see your reflection. Now I've got a shaved head so I don't look like a living Halloween decoration.

I've gained 50 lbs because of treatments this year. 50 fucking pounds. I've never weighed this much, even pregnant. I'm fat and I hate it for more than one reason. Don't say it's just weight, don't worry about it. Being fat makes more complications in my life. For one, clothes. Nothing fucking fits and I'm not about to walk around in muumuus. Another thing is it makes my back and shoulder pain worse from the non cancer shit I get to deal with, so that's more fun. It puts more pressure on my lungs, you know the ones filled with tumours and now with pneumonia because my body hates me that much. And I already have tumours in my liver, I don't need it to start getting fat. Not to mention just body image in general. I even gave up on having breasts because I found out the cancer was growing around and under my implants. It was just better to take them out for easier monitoring the cancer, plus it was causing pain with the pressure that would happen from compressing the tumours.

Lungs, yeah. I miss breathing. Coughing constantly because of the tumours and now I have pneumonia for the third time this year. I can barely do anything without becoming breathless and sounding like a 10 pack a day smoker.

Independence. I used to be so independent. I could do whatever I needed, myself. Then the car accident. Then cancer. I can't drive now because of the risk of seizure until I get a clear MRI of my brain. I can barely walk because of the extra weight killing my back and my lung refusing to process oxygen. So I get to ask for help with.. everything. I can't even cook well right now because of the energy and effort. I'm so tired of needing to ask for help. I hate it. I hate it so much. I really don't think people understand how much it kills my soul having to ask for help. A lot of it, I know, is rooted in the fact that I never want to be like my mother, but that's another rant for another time.

I'm constantly on the edge, wondering if the treatments will work. The list of options is getting shorter. I constantly get to try to figure out if I should try to live life and push treatments or take treatments and miss out on events. I get to be the one stressing over am I asking too much? Will pushing a chemo make me progress to the point that I cannot recover? Will I regret not being able to be a part of something that I could try to attend but only if I push treatment? Constant fear of fucking up is a part of my life. And making the wrong decision could make that life a lot shorter.

Having cancer has eaten away at more than just my body, it's taken away a lot of our finances. Yes, even though we are in Canada and a lot of my treatments in the hospital are covered, there's still a lot that costs us and takes away from everyday finances. There's prescriptions for one, constantly getting drugs to help with the treatment. From pain killers, antinauseates, steroids, constipation, diarrhea, and so much more. Then gas, parking, trying to keep up with daycare, food because you just cannot cook for various reasons, hospitalization messes up the finance plan, and so much more. People ask how they can help and it's hard because, really, you need financial stability and no matter how many things you try to cut or save on, something always depletes all your money. Our savings died long, long ago.

So this is life now. I put this out there to let people have the opportunity to understand. I hope that it helps.

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.

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.

Post Conference 2018

Mike and I were privileged enough to attend the 2018 Young Adult Cancer Canada Survivor Conference at the beginning of the month.  We had the chance to connect with old friends and make new friends as 99 survivors/supporters were in attendance.  I was able to help with making sure everyone had some fun by raising funds for a social event, karaoke (YACCaraoke), at Karaoke Kops. It was the hottest spot in St John's that night!  Huge thanks and much gratitude to the staff and owners of Karaoke Kops!

We were able to attend workshops and discuss matters that have come to light in the past year.  There was a panel, a Big Cancer Hook Up, and many presenters.  Saying the conference was a success for YACC and their ideals is a gross understatement.

The aftermath of conference is one thing that is never easy to deal with.  It's the pain of having to leave your friends for at least another year.  It's the fear of how many friends will die between now and next year.  It's the fear that this was your last year.  That's the thing about making connections: they're awesome and help alleviate your loneliness and fear of isolation, but you are brought into this circle because of a terminal illness, some of us get to stay around longer than others.  I could never say I regret any of the connections I've made through YACC.  I've cherished every friend that I've met through them.  I weep at their death because they had so much that they wished they could do and I weep for the hole that their absence leaves in my heart.  But they are still in my heart.  Always thought of and fondly remembered.

I try to soak in the energy that many gave over the conference.  The laughter and joyful jubilation that saturated us.  To take the tears that were shed in stride and try to remember it is for my loss I cry, that their pain is finished.  I giggle at the jokes we told, I hold dear the smiles and happy faces, I recall the strong hugs and high fives.

I will try to spread the happy.  I will try to remember it is okay to cry.

 

Me and Mike on the bus for one of the social events at conference

Love that we had the opportunity to fly with Porter Airlines

Death - *some not so delightful language included

It's that taboo thing that most people will zone out the second you start to try to talk about.  It's that dark, looming shadow in the back of your head that comes out when you're at your lowest.  Death is something that we all will come to face but that no one likes to talk about.  I have to think about it.  A lot of my friends do.  We're terminal.  Despite all the other issues we may face, we will either die from our cancer, an accident, or if we're lucky from old age.

No what sucks?  I got cancer in my twenties, I never got life insurance then.  I was waiting for my 5 year mark of no cancer to try for something after having cancer, but at 4.5 years my cancer came back.  Now I'm terminal.  Does that mean I'll die tomorrow?  Hopefully not.  Does it mean I'll die in three years, who knows?  But I'm living with cancer.  I'm living with a ticking time bomb that no one has the defuse code for.  As far as insurance companies care, I'm already dead, they don't want to touch me.

So I have a gofundme going, I thought if I could get our bills down.  If I could take that away from the cancer, I would not feel like such an ass when it comes my time.  Cancer expenses aren't just chemo and the pills to help you cope with it.  Cancer is gas money to the hospital for all appointments and scans.  Cancer is daycare so you don't have kids in tow while the oncologist explains that the cancer is showing an "evolution".  Cancer is eating away all your savings so that your family is left with nothing afterwards.  Cancer is not having the energy to do things normal young adults can do on their own.  Cancer is not being able to make food some days and needing to rely on frozen dinners or take out.  Cancer is asking so many people for help that all pride is gone.  Cancer is bawling in a private place because you're tired of being tired, sore, and feeling like a burden.  So yeah...  I started the gofundme to try to make some of that horrible feeling go away.  Unfortunately it's not doing so great.  It was at first, but it's died down now.  It made one month less horrible, so I'm thankful for that.

Cancer is also sitting on the couch watching a show with the Grim Reaper eating popcorn as they watch the cells in your body trying to take over.

I will die.  Will I go to Heaven?  Maybe the afterlife is a bit different.  I believe Albert Einstein was the one that theorized that energy cannot truly die, it continues, it spreads out into the world and space.  The human brain is energy, all those electrical connections that make up you and your thoughts.  Perhaps that is your soul, the energy that makes up your brain, so when your body is returning to the soil, your energy, your soul, leaves your brain and drifts off.  Do you retain your consciousness?  Who knows.

This post is also inspired by getting too many emails and messages that people have died that I know.  Some from cancer, some chose their day to die and had their assisted deaths, some committed suicide, and some from horrible accidents or other health issues.  Either way, I'm surrounded by death.  It's around me and within me.  This is what I live with every day.  Don't take this as a sign that I'll be looking to make an end, cancer chose the wrong bitch to fuck with.  I like life.  I am married to my soulmate, I have great kids that are also assholes at times but I love them more than I can explain, I like cheesecake and rum too much to give them up forever like that.

I'm not sure how to end this post.  I'm not sure where I'm going from here, but I've put my thoughts out there, into the interwebs.  Farewell words I've typed, perhaps you will do some good out there.