I feel like I used to tell myself “I’m not that bad” but I always knew there was going to be a “...yet” at the end of the sentence. First it was “Well I’m thankful it’s not in my brain”, “I’m thankful this chemo isn’t too hard on me”, “I’m grateful that my bones are proving to be stable”. Every time I disprove one of these ideas I scare myself. It’s not one thing that’s happening but it seems to be coming for me all at once. Individually I could handle and treat this fine... when so many things happen at once, I worry.
This summer has been both fun and difficult, stressful and sad. I’ve lost a lot of friends, aquaintances and family to this disease. I’ve had to think about the big picture while looking at what choices I make in the little picture will affect that. These decisions aren’t light, they torture me, and I can get advice but ultimately the decision is mine. I’ve had to become comfortable with what I can accept as a good quality of life - which I keep having to lower my standards on.
At the end of June, I slipped at a wedding (Nelly came on so obviously I had to jump up) and my humerus broke (upper arm). Before all of this, I had been on bone strengthening drugs and I wasn’t told it was this bad. I went to the emergency dept in Carleton Place and they gave me a half cast (while also cutting an arm off my beautiful dress) (the one I was like “I love this I’ll finally spend money on something good quality so I can wear it again”)(not).
Stonefield wedding - beautiful &so much fun.
They gave me Ketamine in the CP hospital which was an experience all on it’s own (“Oh, I get it.. none of this was real” as I was trying to convince everyone this was an alternate universe. My nurse holding my hand as I was scream crying.. #horrormoviestuff) I demanded pain medication even when it had only been 15 minutes from my last dose. I had to get my x-rays done twice - which was already unbearable having to manipulate the broken bone - only to have no access to them when I got transferred to the General, where they had to them all over again.
Top - Arm Jewelery / Agony Face
Bottom - broken/with surgery and metal rod
The paramedics left me alone in a back room and my family had to come find me. I was crying again, nothing with me, nothing around me, no nurse call bell. A resident came over to let me know that there was “other people ahead of me” and I would have to wait. My mom told me I burst out yelling “OH YEAH? DO THEY ALL HAVE CANCER TOO?”. She walked away, flustered. Oopsies!
I ended up having a surgery at the hospital but first, I demanded handheld fans (thanks Aunt Lorraine & Uncle Ric!). I spent a week afterwards in the hospital, sent home with a sling but told I could take it off.., So I went on to bluesfest and cottaging and swimming etc., wearing my sling but taking it off frequently. They told me to excercise it and get it moving again.
1 / my staples come out from my first surgery
2 / jeff and I grossed out
Jeff and I had our wedding anniversary and it started with a trip to the General. My doctor looking at my first arm scan and exclaimed “Oh no”. Just what you want to hear! They had put in a metal rod and at the bottom two screws kept the bone straight and in place. One of the screws from the surgery had fallen out and was floating around in my arm.
Foo Fighters / the night I may have lost second screw #noregrets
Leading to my next surgery. Replace both screws and make it straight again. I went in on Tuesday and only had the surgery Friday. I took up a bed doing NOTHING for 5+ days, missed family holidays, and fasted (one day from midnight-9PM) in case I were going in for a surgery. I then missed a weekend away to heal that we had been planning since February.
They sent me home saying to be “extra careful” this time, and if I needed another surgery (in my head I was thinking hell no), it was going to be invasive - they would put more metal in my arm to keep it from breaking further. I was adamant that afterwards my sling was always on. Funny, though, because they told me with the metal rod, I would never break it again...
This Thursday, I went to an appointment to talk about arm radiation - to help with pain and to strengthen my bones.
As I left that appointment and opened the car door, I broke my arm above my elbow. Holding my arm, we rushed to the emergency room at the General again. They wrapped up may arm and gave me what I think may be the ugliest sling of all time - attached to my neck, a piece of fabric hanging down and holding on to what seems like a felt loop to put my arm im
I miss my old sling because it doubled as an iPhone holder as well..
At this time I was in shock they weren’t going to do anything to fix it - other then giving me heavy duty painkillers (which made me barf in the hospital waiting room) and the sling, which feels less stable then my last. Although, thinking through the situations a few days later, I get it. They don’t want to make me go through a big surgery if I don’t have to. They want it to heal on its own. I want that too. Yet when I hear my bones constantly clicking together, part of me just wants the surgery now to get it out of the way once and for all.
While this was all happening, I was told my chemo had failed. They gave me options and I got into a clinical trial (ZW125). My arm really distracted me from focusing on a treatment that ultimately had the chance to really help my quality of life, or lead me into some really bad places. My liver is clear now, my cancer isn’t progressing fast, but this chemo has only been tried by 60 people in the world. It’s in its first phase of trials. There’s little evidence that it works as of yet, but it’s being done out of the General, my oncologist (whom I really trust) recommended I do it, and there is more hope for my family - this could be my miracle drug. Who really knows? I’ll still have a proven drug if this fails - although it may be a bit more harsh.
Clinical trials are very specific about what you do or take when you’re on them. I’ve had to test my blood, check my heart, have a lung biopsy and an impending brain MRI. If my brain is “stable” meaning I can have the same tumours as before, they just can’t be bigger. That’s the last piece for qualifying completely.
If I had this major surgery, I’d have to put off the trial or go on another drug. I will have been off chemo for a long time when/if I can finally receive this new drug, and that makes me uncomfortable. I don’t want to push it back anymore.
I’ve had a lot going on in my personal life, on top of letting your husband become a caregiver (thank you, Jeff, for learning how to straighten hair, use bobby pins, and shave my legs) which is such a loss of privacy but I’ve learned creates an incredible amount of intimacy.
Jeff’s grandpa passed on July 27th, after having bladder cancer spread and was in a lot of pain near the end. It was sad - and scary - because I’ve never seen anyone in that state before. My heart lurched into my throat, because just a few weekends ago, I was talking to him. It was scary, knowing that I’ll be the same. That makes me feel selfish, but was one of the emotions I felt at the time. .
Roger looked like Don Draper from Mad Men; so dapper, well dressed, charisma, a business man that I know Jeff looked up to. A beautiful life and love story, he had such amazing kids that have all birthed amazing grandkids, one now being my husband. Cousins that were always welcome and warm to me ane nieces and nephews that show so much kindness and gratitude. I am so proud of how they handled the chaotic last few weeks. Grandpa always said “who’s Marilyn Monroe over there!” when he talked about me and touched my real hair and asked me real questions that no one else would really understand.
This was the only part of the post I cried while writing, and I always remember how lucky I am to have been accepted and loved by this family.
I promise I’ll do better at updates. I’ll know a lot more by the end of the weekend.
xx
sam
