#56 Bad News Tuesday

Yesterday I was sitting outside with my coffee. I started having the occasional coffee again in the hopes that my surgery cleared out the cancer and I can enjoy some of the things I used to before I got cancer that I know are acidic and not great for me. I was really enjoying that bulletproof coffee.

The phone rang. It was my surgeons office. She said "Did you forget about your appointment today?" My response was that I didn't know I had an appointment and I told her I could be there in 5 minutes. I live literally blocks away. She said OK. And off I went.

As usual because of Covid, I get a drop off at the door and head alone to the little waiting room. When my surgeon came in she seemed happy and made a few comments about how I looked good and how cute my home depot apron that was holding my drains was. She and her nurse discussed that maybe they should brand some and give them to patients. I thought it was a nice idea.

She wanted to take a look at my incisions, and said they looked amazing, were healing up nicely. And then she took the pathology report from the nurse and said to me "there was so much cancer left in what we took out....." and then just stood there.

I was shocked. I said "What do you mean?" She said "The tumor ended up being 8.5cm and full of cancer....we took 20 lymph nodes and 19 had cancer...and there was extensive vascular invasion". This means I was loaded with cancer in that area. Who knows how much more there is. The risk factors skyrocketted for me and my survival odds plummeted in that moment.

So basically the chemo did NOTHING. It didn't work. It didn't shrink the tumor or reduce the spread. It was 4 months of torture, for nothing. I just stood there with my shirt off...staring at her and the nurse and just said "so what does this mean".

And that's when the language shifted and I heard phrases like "quality of life" and "there's still hope" and "you need to talk to your oncologist". But there was no doubt, this was very bad news.

I felt like my feet weren't on the floor anymore and my eyes were welling up with tears. I just wanted someone's hand to hold, someone to be there to tell me it was going to be ok. Truth is, it might not be. This pathology report shows an aggressive non responsive cancer. I asked a few more questions as I stood there...trying to figure it out. The nurse and surgeon were patient but what I got was basically "this isn't the WORST news but it's almost that bad".

Good news is that they got clear margins, so the tumour didn't invade the skin or chest wall, and they took out all the cancer they could see. Realistically, if 19/20 nodes were cancerous, the odds some cancer remains is very high. No one was willing to say at all that they got "it". I needed to see my oncologist to come up with a plan.

I asked a few more questions...what did comedonecrosis mean...what does extensive extranodal extension mean...all risk factors that increase my odds of recurrence and lower my 5 year survival rate. She said my oncologist would be able to make more sense of it for me.

So I packed up the reports, put my shirt back on and wandered out into the hallway fighting back tears, stuffing the papers into my bag, looking down at my flat chest and catching a glimpse of my bald head in the window as I exited. I started to cry as soon as I hit the sidewalk. Not a sobbing cry but just a cry where the tears run down your cheeks and you just look super sad.

Jason showed up to pick me up and I broke down when I had to tell him. He was silent. What's a person supposed to do....there's nothing to say.

When I got home I had a panic attack and called my oncologist. His nurse said that yes this is bad news but not the WORST news. My oncologist would call me in the morning after he had reviewed my results.

So that was it.... I sat in my chair just thinking that the cancer was very likely still there and because it wasn't responsive to chemo and aggressive that it was just growing and growing. How long do I have to live? I wanted to know. So I took to facebook and asked some women in the breast cancer chat groups I belong to. The main message was that no one really knows and hope is so important and this isn't the end.

I took some more lorazepam and a gravol and forced myself to sleep. When I woke up it was like it hit me all over again and I felt so anxious. I waited until my oncologist called....

He said, "not good news...it's pretty serious and I'm sorry". That's when I knew. This sucked for real.

Then he wanted to talk about hormone therapy - which is a 5 year plan. He discussed the options for me. Tamoxifen is a pill I could take everyday that would reduce the amount of estrogen my body produces. Side effects are hot flashes, weight gain, mood changes, blood clot, increase in risk of uterine cancer, decrease in sex drive. This pill would increase my chances for survival and is an easy thing.

The next option was more aggressive. It's called Gosrelin(zoladex) it's a shot that's given once a month that essentially shuts down the ovaries, putting me into menopause. The side effects are nasty, bone pain, hot flashes, fatigue, elevated risk of heart problems, 45% decrease in sexual function, pain with intercourse, dryness and over time a 50% chance of developing osteoporosis - meaning fractures and bone breaks. This shot is accompanied by a pill - exemestane(Aromasin), its known as an aromatase inhibitor. These drugs aren't chemotherapy but they are hormone inhibitors that decrease estrogen that feeds my tumor which is 50% estrogen positive. The idea is that depriving the tumor of what it uses to grow is what will cause it to die. BUT we aren't sure. At this point we're doing what we can.

My doctor let me think about the options - tamoxifen, less side effects but a slightly decreased survival rate. OR Zoladex, with so many side effects many women quit taking it because it significantly decreases their quality of life - but increases the odds I may live a little longer. He asked me to choose. Told me he was going to consult with his team and call me back at the end of the day. Either way. I need hormone therapy and radiation is next too.

I just hung up the phone and cried again. I thought about not only the fact that he told me that based on my results the likelihood of my cancer appearing elsewhere is about 50% over the next 1-2 years. And after that recurrence, most people live 2-3 years. I did the quick math and heard...maybe I have 5 years to live. But he also told me that some people don't have the cancer recur and live longer. BUT he couldn't say. All he can offer me now is hormone treatment, radiation and he told me to focus on quality of life. He said that at the end of the day he has no control over the biology of the cancer. He just doesn't know.

He told me to have a positive attitude, to focus on keeping active, surrounding myself with good happy people, to enjoy my days....it was then I felt truly like I was going to die. It was awful. I thought of my kids, of all the things I'd miss, of all the years I still want to live. I cried again.

I asked if he could do some scans to see if it had spread and he told me that's not common practice because in reality, if the cancer is somewhere else....they can't give me chemo...my cancer didn't respond. There's not much they could do, but give me bad news sooner. I have a bone scan booked and an ultrasound for some pain I've had in my lower right quadrant, and I'm anxious about it. But that's the only testing I have scheduled.

After that phone call Jason drove me to the naturopath. I had 60g of Vitamin C in my IV. I talked with my naturopath and the clinical lead there and they proposed hyperthermia for me going forward and some other more aggressive IV nutrients. I would have to pay for it all, and it's so expensive, so I'll have to pick what treatments I can afford. The hormone therapy is $1000 a month and my naturopath is $600 a week so I feel so stressed. I had a huge go fund me and it's hard to believe that $20,000 will run out in September - I've spent between 2000-3000 per month since my diagnosis on immunoboosters and supplements, prescriptions and appointments, plus expenses from not working. I still won't be working and I will have to choose between treatments to save me and I just don't know how I'm going to do that. The money stress is real. I don't know how people do it. I honestly don't.

After we left the naturopath my doctor called and told me I could come immediately for my first shot and pick up my prescription. At 3:45pm I officially began my journey to chemically shut down my ovaries and force myself into menopause, and at dinner I took a pill that will further that effort. I am scared and feel alone on this journey. I have no breasts and now much of what made me feel feminine will be taken away as well. I am anxious about the mood swings and depression. I fear not enjoying my life.

Now I wait for the side effects to kick in and determine if it's worth it, to see how the rest of my life will be for the next little while. I also got a call from my radiology oncologist. I am scheduled for my first appointment next Monday, I have to have a covid test and then go see the radiation oncologist to discuss my plan. Early and aggressive radiation. This will hopefully target some of those cells that are left near my underarm, up my neck and on my chest. The list of side effects from radiation are numerous, but it's not an option for me to not have it. The odds are just too great for me to skip it. It will consume most of my summer and from what I hear coupled with the hormone treatment the fatigue from radiation is real.

So here I sit. Almost 2 weeks after I thought having a mastectomy might further my case/ I hoped they'd tell me that they got all the dead tissue and it responded well to chemo and the lymph nodes were clear....and it's true the tumor is gone, but they found so much cancer in my nodes that my case has become much more serious than we had thought. Not at all the news we wanted. "Bad, very serious news" the oncolgist said.

I sit here now wondering so many things. Do I still have cancer, has it spread to my organs, if it's spread...how long will I live. What will happen with my kids, will my life end soon, will I beat the odds, will I now have to wonder if every pain I have is cancer coming back? Will the hormone treatment work or make me a miserable fat depressed blob? Will radiation work? Will I ever enjoy the simple things again? What do I tell my kids....my little babies. I worry the most about them.

So now I have to take things day by day. I didn't get good news at all. But I didn't get the worst news either. Not great by any means but there's a sliver of hope. I have to hang on to that hope.

I've always known that we aren't promised tomorrow, but today I really feel that. It's a strange calmness that comes in between the waves of total panic.

I have to battle on, despite discouraging reports, despite side effects and despite my own fears. I have to change my attitude, to really start enjoying everyday more instead of worrying about my long term survival odds.

Its so much easier said than done but it's what I have to do. Keep pushing forward, drinking my water, going for my walks, eating well and constantly reminding myself that it's not over.

I have tonight and I have a choice. Do I sit here thinking worst case scenarios or do I dig deep inside and tell myself that there's hope and I can still beat this, despite the odds growing greater against me.

It's not been easy these past two days. The darkness feels very real and I have had some serious moments where I feel like I might lose it.

Then I pick myself back up and remind myself that it's not over yet. Some really bad news, yes, but I'm still here.

It's hard not to cry myself to sleep thinking about my kids, my life, my expectations and my fear of dying young. I have to stop myself and say I still have a chance. I keep telling myself that. Over and over and over.

For the next little while I'm just hanging on by a thread, learning to adapt to this new reality.

The other day my very first high school boyfriend passed away from cancer, I had been in contact with him during his illness. I asked him a few things about what it was like to know he was going to die...

It's easy to sit paralyzed by the idea of having a limited amount of time left with those we love, but to just continue living while you can is the best thing you can do. He did that with so much strength and grace.

The last thing he told me, 3 days before he died was to "hang in there".

I may not have gotten the best news, but I still have a fighting chance. I will hang in there.

It's all I can do. Everyday I get to live is a gift. My failure to see it as anything less is an insult to all the people who battle cancer everyday and don't get a tomorrow.

I'm lucky to be here still, telling my story, experiencing my life. It certainly isn't how I thought it was going to be, but it's mine and I'm going to continue to be grateful for it.