1) Exploring new coffee shops in Westboro with Jeff 2) Went a little crazy at Micheal's this week. So many coupons! 3 & 4) Dinner with my bestest at Sidedoor on Saturday. 5) Lots of questions about my wig so... here it is! 6) Today!
I figured I would do a really thorough and technical post getting all of my family up to date before I hit up chemo #4.
This chemo is completely different from my first three rounds. This time, they'll administer me Taxotere (or Docetaxol), and Herceptin. Herceptin is a form of chemo with little to no side effects, and is something I'll need to have administered to me for the next year (it only takes about a half hour). This is because I tested triple positive: progesterone, estrogen, and HER2. Herceptin will help me regulate the hormones that I produce and ensure that no more cancer tries to ruin my life in the years to come.
Taxotere is a little more daunting. I'm trying not to panic (yet), as not everyone gets all of the side effects. I did a bad thing though. I searched Taxotere side effects on the internet and found myself lost in a chatroom of women ranting about how Taxotere ruined their lives. I was that person that researched their illness. WHY did I do that? I swear I didn't mean to, and then next thing I knew, I was 5 pages deep into their thread. So... I'm a little bit nervous.
Common Taxotere side effects:
- tingling or loss of feeling in fingertips and toes
- brittle nails and discolouration of nails (sometimes it can cause loss of nails: this is the round where I put my hands and feet in the ice mitts to prevent this)
- dry mouth and mouth sores
- weight gain and bloating
- joint pain and sore bones (Taxotere attacks bone marrow, which means my bones are literally being attacked this time)
- loss of facial hair (eyelashes and eyebrows)
With Taxotere, there is generally little to no nausea, so that's a plus *insert heart eyed emoji here*. I keep saying I would rather be in pain then be nauseous. I say this now... but remind me I said this when I am in extreme pain three days from now, OK?
I also received the results back from my genetics test. As many of you know, I was really nervous for this. It doesn't help that you receive a call from the hospital telling you your results are in, and then giving you a date to receive them a week and a half later. Can we talk about anxiety?
I brought my mom, dad and Jeff to get the results read to me. I was tested for BRCA1, BRCA2, and Li-Fraumeni Syndrome. BRCA1 and BRCA2 are generally associated with breast and ovarian cancer. Li-Fraumeni is to test for mutations in genes that generally align with child cancer. Esentially, based on my age, I am actually almost deemed a "child" still, and because I was diagnosed so young they wanted to ensure that my cancer didn't actually stem from a mutation in a gene that is prevalent among childhood cancer.
To set the scene, there was really no best case scenario here. If I was tested positive for BRCA1 or BRCA2, it would mean that I would likely have developed either breast or ovarian cancer at some point in my lifetime. So, the plus: I would have an answer as to why I got sick to begin with. I could get a double mastectomy and have my ovaries removed and the chances of me getting cancer again would be very slim. If my genes came back positive here, and I decided (and was able) to have my own children, they would have a 50% chance of them also developing breast and ovarian cancer. If the test came back positive, my mom and sister would then have to be tested and if they tested positive, they would likely choose to undergo preventative surgeries as well. We thought this would be unlikely as there is very little cancer in my family, on both mom and dad's side.
If the BRCA1 and BRCA2 test came back negative, it would mean that there is essentially no explanation as to why I got sick. No answer. It could have been "random". It could mean that my cancer lies in another part of my DNA, but we have not funded and done the research to know which genes to look for yet (they keep our blood on file and if any groundbreaking research surfaces, they can re-test my DNA). No answer means that I could be fine. Maybe it is a one off thing. Or, maybe it's not. Maybe my cancer lies in a gene where I am susceptible to multiple kinds of cancer, and we just don't know it yet. The fear of the unknown, not being able to do anything about it: that's scary.
And, the child cancer gene. This is extremely rare, and if it were to come back positive, it would mean that I am extremely susceptible to cancer of the lung, brain, pancreas, etc. The chances of me getting cancer again would be high. I would be screened for this, but this would likely not be my last battle.
So, I went into CHEO where they read you your results, and my geneticist tells me:
Negative. Everything came back negative.
I was relieved. In reality, this is the best case scenario for now. My mom and sister don't have to worry. If I choose to, and am able to have children, I won't have any guilt of passing along the genes. But... Why me? About 80% of genetic tests do come back inconclusive. This is one of the many areas where our money goes when we talk about "cancer research". There is so much unknown when it comes to genetic mutations and cancer. Without any answers, I can only hope I'm the "one off" case.
I had my appointment with my oncologist at the beginning of January to see how I did with round 2. While I am doing well in regards to coping with the chemo, I did not see my tumor shrink at all the second time. While my oncologist was not worried about this, as it can be common, I was really upset. To go through these harsh treatments and see NO result is absolutely defeating. I tried not to dwell on this for too long, and instead prepared better for my next treatment.
Today, I had my oncologist appointment to see how I did with round 3. We spoke about Taxotere and the change of drugs, and when he measured me he did not see any change in the size, yet again. We aren't sure why. I asked if I should be worried: it's hard not to spiral into a panic. He told me there is a chance that what he is feeling may be scar tissue, and the chemo is working better then we can tell. We won't know what's going on in there until I go for my surgery. And, despite the fact that I'm frustrated and exhausted thinking about how I'm not seeing ideal results with my treatments, it's important to go through with it. The smaller I can get this thing, the better it is for my surgeon. The less there is to remove, the better. Some people respond better to some treatments then others, so let's pray that Docetaxol is my drug. I'm relieved I don't have to deal with any more FEC chemo. PTFO to that (#sorrynotsorry).
I haven't talked a lot about my surgeon yet, Dr. Arnaout. I haven't seen her since my birthday when she gave me my diagnosis. I was overwhelmed and wish I could have asked more questions. Instead, Jeff had to explain sorrily why I was crying harder at the fact that I had to leave my job and even harder when I found out I was losing my hair then when she told me I actually had cancer (priorities?...) I'm getting closer to the end now (after tomorrow, I'm over the halfway mark!) and I'll meet with her to discuss my surgery in the coming weeks. At the beginning of January, the Ottawa Citizen posted an incredible article about her. If you want to learn more about the changes she's making to breast health in Ottawa, and why she's my hero, you should definitely read the article.
“I don’t have a husband or children so my focus is my patients. I don’t feel tired or emotionally drained. This hospital and my patients are my life.”
“I asked myself what is my purpose? How can I make a bigger dent in this universe? The first phase of my career was about being the hero and saving lives. Now I ask how can I help more that one person at a time? I believe through research I will have an impact on a mass number of patients.”
Other then that, my hot flashes are out of this world. I can't even believe the intensity of them and that I will not only have to endure this once in my lifetime but TWICE. That barely seems fair. Am I not putting in my good time now?!
Jeff and I were out shopping the other day and I had my big parka on and I got a hot flash in the store. I walked over to him and said, I don't know what to do. I think I'm really sweaty. He looked at me like I was dying. He tried to rush me home. I was so covered in sweat, my jacket was soaked, my hat was drenched, my face was shiny. I had gone grey. I thought I may faint. I took my jacket off and stood in the -30 weather and bounced back to normal. Then I demanded we still go for brunch. Where I proceeded to have 2 more flashes. We also sleep with our window open every single night and we don't have the heat on in our apartment. I'm not even kidding. Seriously, the worst.
I have to say how grateful, overwhelmed and pleased I am with all of the super kind words from my last post. I thought it was really important to shed light on the scary side of all of this. I almost didn't hit publish, it felt too raw, too real. Part of me didn't want to have it out in the open, I wanted to keep it my secret and continue living the way I always have. And now everyone from my work reads my blog and will probably kick me out of my workplace the second the clock hits 2, and I will have to hide in the basement and finish said work, but despite this (ha) and with all of your positive feedback, I definitely feel confident in my decision to hit publish!
Sometimes I wonder why in the heck I've chosen to be so open and candid about my diagnosis and my life. It is very out of character for me. I am actually a very private person (or, I was, at least). This blog sort of just happened.
I cringe sometimes and want to disappear in my apartment for the rest of the year when people weirdly look at me. At a wig salon, my hair falling out, one of the women looked at me with round eyes and said: HOW big is it? Did you find it yourself?
Or, how about this: Could you send us a picture of yourself without any hair? We think it would make for a more compelling story.
These are moments when I wish I had never hit publish at all. I feel like an oddity. But, then there are moments like this one. It is easily my most goosebump-worthy moment to date:
3AM, I'm lying in bed 2 days after having my chemo. I can't sleep. I'm so miserable and uncomfortable and just, blah. Have you ever been so tired you want to cry? Perfect, you get the picture now.
I'm super lonely, feeling like I'm the only one in the world awake, thinking all of those miserable 3AM thoughts, when all of a sudden I hear a ding go off on my phone. Someone else is also awake at 3AM!
"Hey Sam. My aunt gave me a newspaper clipping and it happened to be about you. I just thought I would reach out and see how you were doing. Like you, I was diagnosed with stage 2 breast cancer at the age of 22. I just finished my chemo in December and am starting with radiation. If you ever want to have a coffee or something feel free to message me back. Sometimes it's nice to not feel so alone".
Then I remember why I hit publish. We're never really alone in what we're going through, are we? No situation is really unique to us, no matter how much in that moment it may feel that way. There is someone, somewhere on this planet, that is going through the same thing.
Mine just happened to come to me in the form of a 22 year old girl living in downtown Ottawa at 3AM. Fate?
So, what was once a way for me to keep my friends and family informed on my diagnosis has turned into an extremely therapeutic sense of release for me.
So when you're reading my blog, messaging me and telling me how much you love reading my words, remember that it's actually the other way around: I love writing them.
xx
Sam
