How can a body withstand this?
Then you hold life like a face between your palms, a plain face, no charming smile, no violet eyes, and you say yes
I will take you
I will love you, again.
In the past months since my re-diagnosis in February I had been faring very well. My chemotherapy seemed to be working: all of the wheezing I had in my lungs has completely disappeared, the pain in my arm gone as well. I have been continuing to work, thrive, plan a wedding, and in turn live a very full life.
I was so excited when I had the opportunity to travel for two weeks with Indigo and be a part of our new store launch in Sherway Gardens. Unfortunately, it was in my last days of travel when I started to realize I wasn't quite.. right. I would wake up in the morning very cloudy and confused, stumbling to use the bathroom and banging into the walls. I had a few theories on this; my new wig was soo tight! Maybe I need a break from it. I'll wear my old one today. I think I should wear my glasses: my prescription must have changed. I think I'm still tired from working overnights last week. I think it may be the travel?
I was able to plan my treatments around my travel schedule, so when I returned on the Friday I had chemotherapy first thing. Firstly, I mentioned these debilitating headaches to my oncologist. Unfortunately, they looked at me and gave me a very troubling response. We are going to send you for an MRI right away. I don't think you should be alone. This really isn't normal.
It turned out, it wasn't. 45 minutes later I was sitting in an MRI, and a half hour after that I was receiving my chemo and my oncologist came in to explain to me that nine lesions had been found on my brain.
I was shocked, but somewhere I was prepared. I knew that something wasn't right. But, brain cancer? For some reason, it just felt worse then any other diagnosis could have been.
A radiologist came to see me shortly after where he recommended me for Whole Brain Radiation treatment (WBR). Essentially, due to the excessive number of tumours, they did not feel comfortable just performing stereotactic surgery (laser) and thought they would see best results from the radiation.
I'm part of a few survivor networks out there now whom are extremely opinionated on this WBR business. I wish, in turn, I may have asked more questions. I wish I may have investigated and pushed my options a little further.
I had been told WBR could cause fatigue, headaches and nausea. It wasn't really explained that I could get as sick as I did. We did not talk about many long term side effects, which are rare but very serious. Many oncologists will not treat with WBR, as cognitive ability long term can suffer. For me, we decided to do five treatments over five days. This didn't sound too bad to me, so I agreed. I also like to think I tough things out better then others, apparently. It was within the first 4 treatments, however, I noticed my overall well being and quality of life take a very significant decline. Many women had told me they were able to continue working during this treatment, so I was hopeful, but I guess my intensive headaches going into treatment were detrimental to my health to begin with.
What four weeks of my life looked like. Every. Single. Day.
I finished my radiation treatments on May 30th. It's been about 4 weeks now for me, 3 of which where I have not been able to get out of bed at all. My joints would not move, my muscle mass atrophied, my skin broken in a rash, the intensive hunger and of course the rapid weight gain that the steroids can cause. The heartburn, nausea, and naturally... the headaches. My right hand doesn't seem to be fully responding anymore: I'm super shaky, make mistakes when I'm texting, and my penmanship is so sloppy!
The mask they make you wear for the radiation is pretty tight.....
If you have read my blog, you likely know I like to get on with things. I don't like to dwell, I can usually push myself over the edge and just... keep living. This time, I couldn't. It has genuinely been the first time I can say: If this was my new quality of life, I'm sorry, that is not a life worth living.
In those sort of circumstances, you can really scare yourself. The whole "looking death in the eyes" thing. It makes you wonder where you go, where your personality has gone. The pure survival instincts come out and for me, I was just... not nice. I reclused, became negative, picky, mean, upset, angry and feeling extremely, extremely sorry for myself. I sat in my room for hours, staring into space, not being able to speak or form thoughts. I kept telling Jeff "I'm just not here right now". It was the only way to explain it. I don't know when or how I passed the time.
Every night in a bought of insomnia I re-mourned every loss I have ever felt I had to experience: my loss of fertility and children, my career, my future, my strong body and able mind. I mourned and cried for all of it and I didn't let anyone stop me for a second for feeling bad for myself.
Then, at some point tonight, I started to feel... better.
In fact, the idea that I am sitting here and am not SO ill still feels like somewhat of a ... miracle?
I had a few women message me and say: just wait. It isn't the end. It will pass. As the fog starts to lift, you start to realize this may not be it and start see the other side. Sure, I still can't go to the bathroom by myself without my little sister picking me up off the ground, but I can see straight for once and that hasn't happened in nearly two weeks!
WBR can take up to 6 weeks to work, meaning we need to give it some time. Like when I had radiation to the breast, I burned and peeled for weeks after finishing treatments. My brain will be swollen like a balloon for weeks, and the steroids they have me on are the only things to control that. The Decadron is probably, no definitely, the worst drug I have ever been made to take. I could actually call it inhumane, but my radiologist told me if I suffered a seizure I may have to get a stent from my brain to drain the excessive fluids into my stomach so for now I guess I'd rather avoid that... steroids it is!
The wedding has of course been on my mind every day, and I haven't been able to oversee how sad and unfair it is that my body couldn't wait just one more month. We had weeks where we thought we would have to postpone, and the thought of that was almost more stressful (and sad) then my current situation was! So last week, they sent me for follow up MRI's and scans to see how the swelling in my brain was doing, and if they could lower my dosage of steroids. If they could, I may be able to recover enough to still have our wedding.
So, here's the point where I get to tell you some good news!
I haven't actually had any scans since I started my new treatments back in February. Bones take a bit longer to respond to chemo, so I just scanned my brain and lungs. For the brain, we were primarily looking at the swelling only as it is much too early to tell if the WBR is working. But: surprise! My radiologist said that almost all of the lesions they found actually had been responding already and looked smaller. My lungs were scanned, and some tumours have been resolved, some smaller, some stable. No growth!
Win!
The first day I was actually able to walk Mavvy outside by myself!
This means I stay on my chemotherapy of Taxol, Perjeta and Herceptin. I wait my time for the WBR to take full effect, and we see what's left over. They typically don't do "open brain" surgery anymore (atleast...not yet...never say never I guess!), and instead they use lasers and "zap" out anything leftover with a surgery called Gamma Knife. This surgery will probably happen later in the summer. I've heard side effects are minimal, which is awesome.
So... the wedding is on! July 9th, here we come. And if I could lose the chipmunk cheeks from the steroids before then, I would be very grateful!
Some peeks from our engagement session, since some people have been asking to see more :). We weren't sure if we were an "engagement" session type but I am super happy we decided to do them. Perfect memories!
In
all seriousness though, there aren't a lot of chemotherapy options that
cross the blood brain barrier which makes brain cancer so much scarier.
My current treatment won't reach my brain. I could try and switch to a
treatment that may, but my current chemo is keeping me so stable from
the neck down that I can't chance it. So, it looks like after we take
care of the tumours in my brain I have now, we just keep watching it
carefully. Hope that the radiation and surgery did it's thing. Hope that
I have plenty of time with no evidence of disease left in my brain.Anyways, that's all the updates I have for today! I had treatment this morning and am feeling pretty tired and zonked out so it's bed time for me (If I can sleep over Jeff yelling at the TV about the NHL draft. Oof!)
xx
Sam
(I finished reading Teva Harrison's book In Between Days. She's
living with Metastatic Breast Cancer as well, and if you ever want a
glimpse into my life, I would highly recommend!)
