Today officially marks the half way point in Loggie’s chemotherapy protocol.
76 doses down. 76 doses to go.
I think today is supposed to feel like we’ve reached some sort of pinnacle and it is all down hill from here.
The truth is, however, it has felt like it has been ‘all down hill’ for so long that I have forgotten what it feels like to think going downhill could be a good thing.
The days just are what they are.
Each day is different.
Some days are ok. Some days might even border good (relative) and some days are just total shit.
I am sure Logan’s medical team think I am crazy, because on the ‘total shit’ days even I know I can be a complete lunatic.
There is no rational when your kid is sick.
I call in to the hospital but my calls are always the same.
“Hi, Ummm, sooooo, this treatment is stupid…..It is totally not working and I hate it. Yes, I know I have to give it time but A. I want to know what your back up plan is because B. This is not good enough and C. You can’t expect us to accept this BS or do this on our own anymore (insert tears and hives). P.S. I want you to know am totally losing my shit”
There is always a long pause, and I am sure a slight eye roll at the other end of the phone but somewhere between those tears, and hives and my stuttering and shaking, and swearing somehow I am always talked off the ledge.
Or at the very least I am pacified enough to be reminded- the goal has always been to hit the half way mark of this chemotherapy protocol and then reassess.
So, now we’ve hit the goal.
We are officially at the half way mark (gold star?? victory lap??) and now I wonder what does that even mean?
I think it means we are at fork in the road.
Do we keep on traveling this path? Or do we take another direction?
Five weeks ago, I would have said with definite truth we would NOT continue doing this chemotherapy after we hit the half way mark.
Logan was not getting better, in fact, I believed wholeheartedly she was getting worse by the day.
No one disagreed with me, which only heightened my fear.
Every visit to the hospital I was encouraged to explore our options at Canuck Place. Our trusted therapist even suggested our sessions needed to shift as we prepared to accept the inevitable and as I wrote in my last blog, I felt like I was having nothing but hard conversations.
Especially with myself.
The start of Logan’s seizures have taken an incredible toll not only on her physically but on all of us mentally.
Not going to lie, this latest blow has been torture.
Five weeks ago, I just felt like I couldn’t do any of ‘it’ anymore.
I had a breakdown.
A complete and utter, fall apart breakdown, and so did Brody, and so did Jared.
For me, I couldn’t stop crying.
I must of cried a million tears.
It started in the parking lot of the hospital and I felt like a ton of bricks had been thrown at me.
I was shattered.
It was raining and Logan needed blood work done. There was no handicap parking spot and we needed to take the wheel chair across the parking lot in the slush, and snow and sleet.
I cried as I struggled in the freezing cold to pull that chair I loathe out of my car and stuff her in it. I cried as she had her tests done, watching them put a warm compress on her veins. I cried as I drove home through ridiculous traffic trying to calculate how many kilometres I’ve driven back and forth. And when I got home and finally got Logan settled back into her warm bed I cried as I returned to sit alone in my parked car just to be alone.
It was all too much.
Logan could hardly be moved out of bed. She could hardly eat anything. She was choking on her food, having difficulty with her breathing, and her walking was getting worse. She hardly engaged with any of us and I felt desperate.
Brody was also not his usual, sweet self. He was bitter and angry and nonstop back talking me and Jared was like a bomb with a lit fuse.
No matter what anyone said or did, he seemed like he was going to explode at any moment. Edgy, exhausted, angry, and so incredibly irritable. Honestly, he is usually pretty easy going but I couldn’t even look at him the wrong way and he’d snap at me.
The inevitable collapse of The Lay family…..totally happened.
And all I could do was cry my way through it.
“Fuck this” I thought. “Fuck it.”
I didn’t know what to do or where to start.
So, I did what I always do and I started to write.
Not a blog. Not to all of you, but to myself.
I picked up my journal and I started to go back to basics.
How did I want to feel in all of this?
It took some time to figure that one out because obviously I don’t want any of this, but once I found a few words I started taking baby steps to explore what I needed to do and how I was going to get there.
Here is what I came up with.
“Tell Logan the truth. She is dying.”
“Now, tell her how her dying is making everyone in the family feel”
Oh Fuck, Fuck, Fuck.
“Also, take Brody for some alone time and force him to talk to you”(Insert- know ahead of time you are going to feel like an even shittier mom 😩)
“And book a couples therapy session and get our therapist to tell Jared he needs to get his shit together, and maybe focus on what he can do instead of what he can’t ” (Not entirely what happened 😳)
But it was a start.
And so it went.
I called a family meeting.
I told Logan- straight up- I am pretty sure she was dying.
We all cried.
Like, really cried.
Like, actually fucking bawled our faces off.
Thinking about you all reading this I can almost feel judgement. You might think this approach is harsh, or not my right, or negative or like I was ripping away her hope, but I am her mother and I just knew at the very depths of my soul this was the right thing to do.
I had to be the one to tell her.
She needed to hear it. Hardcore. No fluff.
I could see her slipping away before my eyes and I feared she thought time was still on her side when the reality is, we all know it’s not.
She is going into autonomic system failure and the only thing that will help her now is hard work, moving her body, and pushing herself. We need to work against the clock. Buy time while this chemo does what it can.
Her cancer is only one part of her problem.
The doctors all agree unless we do something to help combat her blood pressure issues, the seizures will continue and other health problems will also manifest. Ultimately if we don’t retrain her brain and get her moving it may not be the cancer that she succumbs to. I just can’t bear to live with myself and let that happen.
But I also knew it wasn’t going be an easy task to get her moving.
It had been five months of her being stagnant and I needed to shock her into understanding her reality.
Extremely low BP, plus feeling like crap from chemo and low blood counts combined with the sadness and pity she felt around her would make pulling her out of this slump difficult.
This wasn’t going to be a dramatic turnaround. We all needed to be prepared but I also knew it was imperative we tried.
It was ‘go time’ as Jared put it.
Do something, or give up.
I knew I had to be harsh and push her or there wouldn’t be any quality of life (god I hate that term) in time she has left.
She asked me how long I thought she had to live.
I told her at the rate she was going I doubted she would make her 20th birthday. Her birthday is June 20th. It is supposed to be her champagne 🥂 celebration this year- go figure.
We cried some more.
Then, Jared, Brody and I each took a turn telling her how her dying was making us feel and how it would affect our lives.
Listening to Brody was the hardest. He basically just cried and begged her not to die. But being the kid he is, he also presented a work out regimen to help her get stronger (and an action plan for our doctors, and the new surgeon at VGH👊🏻👊🏻😉)
It was in this moment, I could feel, we all had a shift.
Logan looked at Jared and I and through her tears she asked “What do I have to do to live?”
Then, she looked at Brody and said “ Don’t worry buddy, I am not ready to go yet. I will try and get stronger”
And so it started.
The very next morning we mapped out a plan to get her up and get her moving and eating whole foods and we made this plan to work around our own realistic goals and terms.
Not going to lie, it has been the hardest, most draining 5 weeks of all of our lives.
And most days, everything has totally sucked
We’ve kept at it and there is progress to report.
So much progress!!!!
Logan is now eating 3 meals a day by mouth. She is choosing her meals (always smoothies for breakfast) and I although I am so tired of cooking random shit, she is almost getting enough calories to remove the overnight feeds. Most days she gets only fluids and electrolytes through the tube.
She requires 3000mls of fluids a day to help her blood pressure. Ensuring it happens every day is a big task within itself.
Second, we started an exercise routine (otherwise known as the JJB home physio program) and each day two or three times we get her out walking, doing squats, and lunges and using her hand weights. Sometimes, just for fun, we have a dance party.
But, regardless of fun, rain or shine, we commit to the walking.
No excuses, it doesn’t matter if we are having a bad day or the weather sucks (which it always does 😩) we go.
When the walking first started she couldn’t even make it from the house to the first lamp post without needing her wheel chair.
The first time we tried to walk up a small incline she needed to sit down on the road twice. She was shaking and crying. Jared and I both had to hold her up.
Now, almost five weeks later, she can do the entire walk (over 1.5 km a day) without her wheel chair and she is now attempting lunges on the sidewalks.
Huge progress considering just over a month ago I told her, and I completely believed, she wouldn’t live for another three.
Now, today, I feel like she could, maybe, just possibly, once again, see better days.
We still have so far to go…
But this is a start.
Most days start out the same. Her blood pressure in the morning vibrates somewhere between 50/40 and 70/50.
It is a two hour process to get her up and enough fluids into her and her meds leveled out so that she is stable enough to start pushing herself to exercise, walk and eat. It is a delicate balance of not pushing too hard while her body is preparing itself. Without enough time and support she can have a seizure and then our efforts for the day are sabotaged. There are times when we are all tired and we want to skip exercise but we do it any way.
The days she does have a seizure are exceptionally hard to stay positive and chemo days are the absolute worst to try and get through but some how we manage to push forward.
Logan is still tired all the time, but I can see she is also trying harder every day and this is what is motivating us all.
I see glimpses of the old Loggie and I feel alive and inspired and encouraged.
Brody is also doing better, he comes on every walk he can and when I hear him arguing with his sister about stupid shit, like who plays ‘that song’ I actually feel happy because there is just a little bit more normal these days in our lives, whatever that is.
The JayRod has taken up a new hobby of making industrial shelving and furniture and he’s also started selling them which is alleviating a bit of money stress. Sales in his industry are such a grind so this is a a win, win.
What I learned (when I listened) is part of the reason he’s so stressed has to do with the additional costs associated with Logan’s illness. He doesn’t want us to have to give up the ‘fun stuff’ we do (who does??🍻) so this new endeavor is giving us a few extra bucks and reducing some of the stress.
We both agree, now, more than ever, our 90 day plan of escape and cool experiences isn’t just ‘a nice to do’, it feels like a necessary part of the treatment regimen.
He’s also decided to join crossfit.
So, again win, win. Not only will I have a super hunky ripped hubby by summer, I think it will be good for his mental health.
Hopefully, fewer explosions all around.
And so it goes.
We continue to try our best- even when it sucks.
The half way point is officially here.
It has been a grueling struggle to reach this milestone and we have literally been clawing every inch of the way but I am proud because we have not given up.
We refuse to give up.
Instead, we are taking a time out.
and to restore.
We decided to give our doctors some time to review Log’s progress and to discuss what they think moving forward. Maybe they will have new plan when we get back. Maybe this won’t be the half way mark of this chemo but the beginning of something new.
Who knows….. but either way, we as a family need another time out, and a break from all of this cancer crap.
So, we are enacting ‘The 90 day Reid Adkins Program’ and we getting the heck out of dodge. Period.
We are going back to Mexico after Loggie recovers from this dose of chemo (next week) and we are happy our oncologist agrees this is the best possible plan we could have.
She actually cried today when she saw Logan walk into her office without the wheelchair. She hugged super tight when I showed her the videos of Logan lunging and she told me how very proud she was of us all.
She also shared with me that since I haven’t been entirely honest with her about our plan to jet away at the half way point, Logan’s MRI would have to wait until the week we came back from holidays instead of next week before we go.
I got a bit squirrely, but she calmed me down.
“I don’t want you to spend your holiday analyzing pictures and test results. You do that enough” she said, “I want you to have a few cold margaritas, sit in the sun and be with your family. Look at your daughter, she is the only perspective you need right now”
Of course, I cried. (Again)
God, we’ve come along way in our relationship. I pretty much love her more than life and think she’s totally rad. (This week anyhow 😜)
We are also bringing someone to help us on our trip so we don’t have to juggle everything all on our own and we can come back feeling like we’ve had an actual break.
YES, again…progress. BOOYA!
I am learning I don’t have to do it all on my own to be a really good mom. There are no awards for overachieving and running myself into the ground. (Who knew?)
Auntie Betty has agreed to fly down at the half way point of the vacation so Jared and Brody and I can spend some time together surfing, and maybe doing some yoga.
Loggie is thrilled. Our last trip was great but she said she always feels like she holding us back from enjoying our favorite things.
The truth is…. she is right.
Cancer does hold you back, and it sucks, but cancer also pushes you, expands you, and at times, it also leaves you needing nothing more than a solid, super indulgent, and super fun, release.
We chose perfect words for this year so we might as well live them, I guess.