Many of us spend our lives living a life ‘according to’.
‘According to’ means having a plan.

We as human beings seem to live to make plans. We need them. We strive to fill our calendars with them and even when we are not making any plans we are feel like we should be.

I am as guilty of it as the rest of you. No one likes to be stagnant.

Plans however, are often mistaken as goals and as such are often part of what motivates us. Plans to finish college, plans to find the perfect life partner, plans to land the best job, to buy a house, to have kids.

We plan for our future, our retirement, and even our death.

Our lives revolve around our plans and thus we spend a good portion of it in competition with ourselves and with others.
A life ‘according to’ dictates how we behave. It guides us down the natural path of what’s expected  but it also means that we are always in pursuit.
-Of the next big thing
-The next piece of the puzzle
-Of what we think will make us happy, successful, and complete.

The thing is, many of us never get there.

We never ‘arrive’ because plans always fall though, expectations always change, and somehow we always end up feeling like accepting where we are at (if it is not where we want to be) is a bit of a failure.

So what do we do?

We change our focus, readjust our outlook and set our sights on a new plan.

Most of us, including myself, measure our own life ‘according to’ plan by tangible, reachable goals but in doing so, sometimes, I think, we simply miss the point.

Plans don’t always give us purpose and direction.

Sometimes all they do is just complicate things.

Today, we got a plan to deal with Logan’s tumour progression.

I have felt very anxious for past month since we found out her tumour was growing and have desperately wanted a solid plan of action to deal with this problem.

I thought having a strategy was going to make us all feel stronger, more in control, and more empowered.

What I didn’t expect was receiving a plan and feeling more at a loss than ever.

Yesterday, I learned execution doesn’t always make you feel better.
Sometimes having a plan just makes you feel really, really, really afraid.

None the less, here is ours.

Logan will start chemotherapy for the 4th time.

It will likely begin next week.

She will have surgery to put her port in as soon as possible. They are thinking Monday. She has been taking aspirin to lower her risk of a vascular stroke and she needs to be off the blood thinning medication for a week before they will risk putting her under the knife.

Chemo will likely start the next day.

To begin, we will take 5 days of an oral chemotherapy called Temodar.
The side effects are mainly the same as IV chemo except she shouldn’t lose all her hair and she will be able to take this medication in the comfort of her own home.
Her counts will drop, she will feel sick, and because she’s had so much chemo in the past she will likely need platelets and/or blood to help her bone marrow recover- hence the port.

There is a possibility of adding up to 3 additional chemotherapies to this oral regimen if we need them. Our oncologist said she open to doing so if Logan’s symptoms continue to progress during the first cycle of Temodar.

I have spent the last twenty four hours researching and reading studies and success rates on both options, temodar alone or temodar in combination with CCNU lomustine and vincristine.

There are two schools of thought. Ease her into this slowly and see how much toxicity she can handle or just go gangbusters and try to attack this thing with a more intense treatment. None of us know the right answer, I am not sure there is one.

Both are risky.

Of course the overall hope is the oral chemo will be strong enough to stabilize her tumour but soft enough it won’t totally damage her bone marrow any further. Which means she could take it longer. We just don’t know if it will work. The results are not outstanding but it is also a fairly new drug as far as chemotherapies go and information is fairly limited for Log’s type of tumour.

Truthfully, our options are all very limited and it will be a delicate balance between treating her cancer and maintaining a good quality of life.

We have been told that this oral chemo (or the combination of both) will likely not get rid of her tumour. The goal will be to stop it from growing any further and the absolute hope will be to see a little bit of shrinkage but probably nothing more.

Don’t get me wrong, this does not mean we are giving up- but it does mean we are being realists. It’s been 11 years, and we know where we are at. Each time this news is getting harder and harder to swallow. (Pardon the brain tumour pun)

Time is now our priority but a cure is still our hope.

If we can stabilize things with the oral chemo then we have more time to get her symptoms under control and hopefully she can feel better and enjoy more experiences with people she loves. Maybe we can book another trip, have some fun together and forget about all of this for a while longer. This is the goal.

Where things stand right now, we are basically swimming against the current.

Her symptoms are getting worse, likely because her tumour is progressing slightly as the weeks tick by.
We are all in agreement that it is time to treat the tumour because despite our efforts over the past two months nothing is working and she is steadily declining.

We are now in a time crunch.

Our oncologist broke down and cried. She told us how sorry she was that we were ‘here’ again and she sobbed feeling responsible for not curing her. She reassured us that she was staying strong in her quest to help Logan get better. My heart broke for her along side of my own.
Its been a long road. She’s an amazingly smart, diligent and optimistic doctor yet she’s an incredibly tough nut to crack. Her communication and bedside manner has not always married up to what we needed in the moment but today when we saw her raw emotion we felt how deeply she cares about Logan and our whole family.
It was also in this moment I also realized with absolute truth that having her on our side is Logan’s best chance at survival.

No more fighting her.

No need for a new oncologist, we are and always have been, in this together.

We also met with her surgeon Dr. Steinbok.
He wholeheartedly agrees with the plan to try chemo first.
He thinks the risk of surgery far outweighs the benefit at this point.
His perspective is the damage and tumour are intertwined and are progressing systematically by blanketing normal and healthy brain tissue.
Her tumour is not growing like it did before, there is not a bulk or solid lump for him to deflate or take out and his attempt to help may cause her more harm than good.

He did suggest that because he’s turning 70 and is winding down in his career, we meet the neurosurgical team at VGH. Apparently he’s referred us to the ‘go to’ brain tumour guy over there.

Dr. Toyota will be our contact ‘just in case.’

We don’t know for sure but there may be a place for surgery down the line. Maybe a biopsy for further molecular studies, maybe a new technique will be discovered and if so we can be reassured we have one of the top brain surgeons in Vancouver at our finger tips.
Dr. Steinbok comforted us by telling us he’s not passing us off and assured us he will follow up on Logan’s case. He also pacified us by saying if it ever did come down to surgery and we wanted him to be in the OR, as long as he still had a license he’d happily assist.

Our endocrinologist stopped Logan’s growth hormone injection for obvious reasons, and the cardiology team hooked her up to two separate monitors so they can get a better picture of what’s going on inside her twenty four hours a day. We reviewed some test results, and were told Logan’s frozen tissue samples from previous surgeries had been sent back to pathology to double check for genetic mutations and certain changes.

And that was it.

We left with a new plan.

It’s not a plan we like. It is not where we want to be and it is definitely not fitting into our ‘life according to’ but it’s where we are at and in the words of Logan herself  “We are going to have to figure out a way to roll with it.”

And that is just what we will do.

Again, for the fourth time.

We will add more chemo beads to her already long necklace and we will readjust, refocus and remain hopeful that this is just one more of the many detours rerouting us in this life that is all over the f’ing map.

Here we go again……