We celebrated Rach’s 30th birthday recently. It was wonderful and beautiful and everything we had both hoped for. Fifteen years together, neither of us could have imagined that we’d be spending the morning at the hospital prepping me for a new treatment that could potentially extend my life by unprecedented amounts.
Up until now we were under the impression that I’d already be on my way out. When I met my oncologist a year ago he gave me a twelve to fourteen month time line but here I am fourteen months later at essentially the exactly same place I was when I started. The biggest difference being that medical science has come a long way since then. The last year has been fraught with trials and difficulties that no young family should have to deal with. The emotional rollercoaster that I go on every time I get a call from the doctor or a scan result is inexplicable. The last few weeks have been some of the most emotionally turbulent because of the scan results about my brain, chest and news about the immunotherapy not working anymore. I can’t possibly explain what it feels like to get calls and results where doctors deliver devastating news to you, shrug their shoulders and throw their hands in the air because theres nothing they can do. You get thrown into a spiral of emotions and you don’t even hear everything they’re telling you. It’s almost irresponsible that they don’t write everything down for you. If they had, I would have had the time to calm my nerves and go back and look at the results and understand that the scan of my brain showed a tiny lesion that was treatable with one round of radiation, which was done successfully last week. I would have understood that the growth in my chest wasn’t anything new, it just put me back at square one, which sounds bad but I take it as a win. All the shrinkage that the immunotherapy had done was now undone but a year has passed and I’m just as “healthy” as I was before. In the heat of the moment with my heart pounding in my ears, all I heard was “new growth in your brain and chest”. My knee jerk response was to imagine the worst and then write about it. Things are changing all the time and if I can just stay alive long enough for them to develop a viable treatment plan then everything will be okay. I might just be one of those cancer patients who gets to ring the bell at the end of treatment, I might get to see more of my daughters’ milestones, I may even get to turn forty! I just need some hope and a little bit of luck.
In the past year I’ve flown to the best clinics in the world just to hear the same thing over and over again. “You have an extremely rare type of sarcoma, treatment options are minimal and survival rate beyond a few years is slim”. We asked about blood transfusions and clinical trials, organ transplants and surgeries but all our ideas were thwarted, there was always an answer and reason why none of that was possible. We were told time and time again that the only option was chemo or immunotherapy and were told that the more drugs I try, the less effective they’ll be because of the way the cancer learns to fight. I was scared all the time, thinking my life was being immediately threatened.
A few weeks ago however, I was put in touch with a radiologist who has been leading their field for the past fifteen years at some of the best hospitals in the world and is now working out of princess Margaret, (I think this might be that little bit of luck I mentioned). This doctor has taken an interest in my case and after sitting down with them, they explained that using a concentrated and precise dose of radiation, they can eliminate the main mass in my chest with an 85-90% certainty. This doctor has helped many patients with sarcoma using radiation and has extended their lives while retaining quality of life beyond anything that chemo could ever hope to accomplish. Obviously theres always two sides to every coin, this comes with its own set of risks but unlike the doctor in Jersey, these risks are well worth the reward and don’t put my life on the line to achieve the results. It’s hard for me to be as hopeful as i want to be because of my track record with treatment but im cautiously optimistic and try to remind myself that anything that buys me even a little bit of time is worth it because that’s more time with my girls, more time to live and more time for science to advance. We have friends with connections who are all working to find a way to save my life, people who helped create the covid vaccine, people with resources beyond comprehension, people that work in bio engineering and others that have created their own protocols for dealing with this rare type of cancer and they all want to help me stay alive for as long as possible. They all want to save me. And then right as things take a turn for the worse, here in my own backyard, this doctor shows up with the promise of hope beyond anything we’ve heard thus far. This doctor told us a much different story about my cancer, while it is still stage IV, it’s not attacking any of my vital organs so if she can eliminate the main mass then the chances of seeds spreading so to speak are much less likely and, even if it does pop up somewhere else, shes confident that it can be spot treated as necessary for a very long time. For the first time in over a year I don’t feel like im dying quite as quickly, I feel a sense of hope and optimism that I hadn’t known before. I’m sad that this wasn’t the first line of defence but I can’t go back now. All I can do is hope that it’s not too late for this to work.
I’ve learnt a lot about what it means to have cancer in the last few years, first from watching my dad fight and then with my own diagnosis. I try to articulate what it means through my writing but it never seems to come out as clearly as I want it to. I’ve written twenty one posts about my diagnosis and it feels like I still haven’t really dialled in what it means to have cancer. I feel like I keep saying the same fundamental things over and over again, enjoy every moment, be grateful, find the silver lining. All these little sayings that everyone knows and hears all the time but few take to heart and practice daily. I talk about relationships and how important they are, saying “I love you” more often and being able to grow through what you go through. I talk about the value in doing what you love and doing what’s good for you because we’re all on a timeline and it’s never to late to start living your life the way you want to. Everyone thinks it’s so hard to make time for themselves but I’ve found that I have a hard fitting in all the things I love to do! From morning to night my days are full and I’m only doing the things I love because cancer or not, we all have a responsibility to use our time wisely. To take advantage of this gift of life. So I go into this new treatment regimen with renewed hope and optimism, with a new outlook, one that has a bright, adventure filled future with me and my girls.
3 thoughts on “A new hope”
So glad to hear the optimism in your voice! Miracles show up at the most unexpected moments and I have other friends who have experienced them as well. We’re all praying for you but it is the those unique “actors” such as your new doctor who mainly account for them.
Blessings to you and your family.
Danielle and Phil
So, prayers are answered! Your latest missive has be sobbing great tears of relief. Thank you. Live on!! and on and on and on! You are much loved.
Praying for you!💜