I wrote a letter to myself in India.
It was part of an activity that we did in the a fresh chapter portion of our trip. It was an opportunity to ‘get real’, say a few words of encouragement, and give myself some perspective in my everyday life when I got home.
My instructions were to seal the letter and the facilitators of the program would mail it to me at some point- months after I arrived home from the trip.
I was assured this letter would likely arrive when I needed to read these words the very most.
Of course, it came the day we got home from the hospital.
“Hey you,
I bet this letter is going to arrive just when you need it most. It is just a reminder of India, of all the connections you made that led you here and of all the shit you’ve already sorted though in your life. It is a reminder of how you are exactly where you are supposed to be today and every single day. Remember that.
Acceptance is tough.
But Jen you need to LET IT GO. You are so much happier and a better version of yourself when you accept things for what they are.
Don’t overlook the good in your life and focus on the bad- it only fucks you up and distracts you from being in the ‘flow’ and attracting what you want in your life.
You are fun and smart and worthy of happiness despite all the shit. Jen, you got this! It is your life too and it matters.
Be grateful, say I love you to those who matter most and try to stay in the moment because if you miss it you will never be able to get it back.
I love you. Take care,
Yourself.”
Today, I am trying to take my own advice by not focusing on the bad but rather looking at the good.
We are discharged and are now at home.
Logan’s blood pressure is slowly coming up and and she is starting to feel better.
We are pretty sure the medication is working.
All the tests we had done (and it feels like we’ve had a zillion) showed there were no new underlying conditions to worry about.
Her heart is good, her blood work is stable, she isn’t going into adrenal failure and her organs look to be holding their own. All good news.
And there is good news on her MRI too.
The area we are most concerned about, the medulla, where the biggest portion of her tumour is looks stable.
There is no enlargement, no giant cystic cavity filled with fluid cutting off the flow to her brain. Yes, this is all good and we are happy and relieved about this news.
But, despite this good news, there is also some not so great news about her MRI.
It is now confirmed that there is some slow progression of signal abnormality moving into a different part of her brain called the ‘pons’.
But before you all gasp with anxiety, I want to reiterate the key word being slow progression.
The report written this week looked at MRI’s dating all the way back from 2012 (when things looked best)- until now.
It’s one thing that hasn’t been consistently happening, reviewing and comparing her previous scans and in such detail.
There are many reasons for this.
Stable in a brain tumour patient means a number of things and not just a picture we take every few months.
It means looking at and analyzing how she is physically and asking the question “Is her body copping with this tumour? Is she feeling well?”
This is most important. Small changes on the picture are less poignant if overall she is doing well.
To be honest, one of the problems we also have when we look at Logan’s scans are they are really hard to read. There is scar tissue, surgery damage, residual tumour, post radiation changes. It is basically like a dog’s breakfast so subtle differences aren’t always noted as being a that big of a panic because we aren’t even always sure what we are looking at.
Alot of our decisions on how we proceed with Logan’s treatment plan and medications are based solely on how she is doing physically and most of the time that is the best plan for her.
But, unfortunately over time things can compound and when we look back at her scans from the last couple of years and we compare all those ‘small changes’ over time, we see an accumulation which is an more obvious one in some areas.
Here is the deal.
It is the best way I can describe it from the MRI report I have in front of me (taking out all the big medical words) and from 11 years of experience.
After radiation and her last round of chemo she had some inflammation for a couple of years and the damage and atrophy occurred, then it seemed to level out and things looked a bit better.
In 2013 there was some activity in a lesion at the right obex, the area of the brain where the fourth ventricle narrows to become the centre canal of the spinal cord. This growth has slowed in the last year, but now, it has slowly extended upward and we are seeing patchy abnormalities in the bottom half of her pons.
This ‘new but not so new’ progression in the pons has been most pronounced in the last 18-20 months since Dec 2014 when compared to her scan in June and most recently this week.
“It is hard to say at this point if Logan’s new symptoms or all her symptoms in the past while are related to this slow progression because she has so much damage and residual disease in all of the brainstem but the short answer is that is pretty safe to say yes. ” (The words of our doctors)
So, now, what does that mean?
Well, basically, we have no fucking idea.
We don’t know what this new signal abnormality will mean in the future or how and if it will continue to progress but yes it is scary and worrisome. No one is more stressed about it than us.
But there is nothing we can do about it.
And here is where all the questions come flooding in that you and I and everyone will all want to ask.
Here is also where all the frustrating answers surface because truly there are no real answers.
No, surgery is not an option in this area or even necessary at this time.
No, she cannot have any more radiation to shrink or stop this.
And No, chemotherapy is not on the table at this point. It is not that dire and it would do more harm than good. It won’t get rid of this.
This is why living with cancer is not black and white and so hard for many to understand. Sometimes, you have to wait even when you don’t want to because you aren’t sure what the cancer is going to do. Sometimes slow growth is better than any treatment and sometimes managing symptoms is all you’ve got.
Living with cancer means having to accept where you are at.
It means knowing at times there will be no answers, accepting there is no magic pill or crazy homeopathic, naturopathic remedy that will make it all simply go away that life will never go back to ‘normal’.
It also means accepting (as fucking excruciating as it is) that what it really comes down to is having the best quality of life (I really loathe those words) you can despite the cancer.
Does it fucking suck?
Yes.
Is it getting harder to manage the stress and the worry about lack of advancements and a cure as the years tick by?
Yes, sometimes it feels like an unbearable load to carry.
But am I hopeful that Logan will feel better again and get back to doing her normal things?
Yes.
We do luckily have some of the best doctors in the country working towards that very goal.
The good news is- she is responding to the new medication for blood pressure and the crazy fluid intake and salt tablets are helping to level her back out to a much better, safe and healthy blood pressure.
She is having less nausea and vomiting. She is eating better and isn’t collapsing or complaining she is so lightheaded she can’t see.
It is all positive and is all that really matters.
If Logan is doing well we will focus less on the shitty parts of her cancer and more on the good parts of her life.
We, and her doctor’s are not worried, that Logan will have an overnight major change or these abnormalities will suddenly explode and something major or devastating will suddenly happen to her without notice.
It is not how her tumour works.
In the past, yes, we have seen some quicker growth and metastasis but overall since radiation this tumour has been fairly stable and we have been able to manage most of her symptoms as they come.
We expect this will be more of the same.
Can we say for certain that if last 18 months has showed some increased progression that in another 18 months we won’t see more?
No.
That is the shitty part of cancer. The hardest part is always the not knowing.
But, I think it is promising that doctors are on top of it and I won’t let them miss a thing.😜
I think it is promising that she is responding to every medication and treatment we have offered her over the years despite any slow progression or any damage from treatment.
And what I think is most promising is that Logan is optimistic and she is focused on getting back to feeling well and pursuing the normal things in her life that she enjoys not her cancer.
She doesn’t want to be sick. She doesn’t want to be held back and she doesn’t want this disease to have control over every single part of her daily life.
Her goal is to get back to her job. She loves the kids she works with and the people there. She wants to hang out with her friends, go to parties, think forward to her next semester in college, visit the Okanagan at Thanksgiving and maybe see Drake on Sunday.
For us as a family, we also want to continue to live a life as normal as possible. We want to continue to plan and execute another family trip back to Asia in the coming months because it’s what we love to do together.
Escape all of this shit.
We want move forward with a few new (and currently secret) big life changes that are on horizon and although we feel a little immobilized with fear today we know it won’t last forever and that the only option we truly have is moving forward.
In the profound words of a wise boy who lived a very full life despite his own cancer, “Never give up.” Thanks Spence, we won’t.
We have always known Logan’s cancer would never be gone.
We have always known the choices we made to give the treatment would unfortunately, affect her.
We have always known her life would be different than others and for as long as she is alive we’d sometimes need to move the goal post.
We’ve also always been fully aware that for us personally, as her family, we too would continuously need to adjust our own expectations and learn new ways to accept this life for the reality it is.
Nothing changes that.
No MRI report, no new information from doctors.
In some ways, today, is the same as always and although this report confirms what we have already suspected, it doesn’t change anything.
The plan stays the same and this is just another bump in a road filled with pot holes in a life that is truly all over the map.
The next steps are all about getting her feeling well. Getting her BP up enough that she has the green light to get back at life. (Which is already happening)
We have a swallowing assessment booked for next week (any changes in the brainstem can increase the risk of choking and aspiration- we are just ruling that out)
We are having an x-ray done to check her spine and doing some follow up blood work.
At some point in the next couple of weeks Jared and I are going to sit down with her oncologist and talk about the “what if’s” and discuss her thoughts.
We just aren’t really ready or wanting to go there yet because the reality is we already know what she is going to say.
“I don’t know.”
The truth is, none of us do.
So, that leaves nothing else except to take my own advice and try to focus on the good and not get all fucked up over the bad.
And if nothing else- I guess, at least, that is some sort of plan.
