It’s a weird place to be to be in, but here we are.
It is a new year and we have no plan.
We are all home together. No chemo schedule and no lingering work or projects. Time is standing still and although every day seems to be the same shit, there is also a weird pause in the madness giving us all some much needed respite.
Bdog seems to be the only one who has any real obligations on his calendar and we joke how we are all living vicariously through the normalcy of his life.
Each of us are doing our best to take this time and use it to exhale and relieve some of the stress that has literally paralyzed us for the past two months.
It has been such a shit show and we’ve been left reeling.
Things have been extreme in both goodness and terror and the ying/yang of it all has thrown us for one hell of a loop.
Wrapping our heads around where we are at, while trying to get our thoughts and lives sorted seems daunting. How do you begin to map out what to do, when you don’t have direction or a plan and all you can do is fear what the F is coming down the pipe?
We are living on the brink. No one is willing to crack but it hasn’t been easy to accept any of this. We feel like we aren’t doing enough. We aren’t enough. We haven’t thanked all of you enough, we aren’t worthy enough, we haven’t figured out enough of a plan to save Loggie.
We aren’t saying much to each other on the outside but I know on the inside, our minds are all spinning.
Surrender is hard. Accepting circumstances for what they are and meeting yourself where you are is a hell of a job.
It is so easy to beat yourself up for not meeting your own expectations or feeling enough when you measure your life and realize you are so fucking far from where you want to be. Coupled with the realization that you are going to have to give up control and expectation and just be—— well, holy shit.
Insert anxiety.
If you are someone like me, the constant desire to control is ever present. I am type A. I like getting shit sorted. I relish in the idea of getting to the bottom of things. All I want is for Logan to get better and I want a clear knowing of what our life is going to look like. Is that really too much to ask? (Insert sarcasm😉)
Even though this past year and half has been hard and I have loathed that I didn’t have any control over our life because it was filled with crazy chemo schedules and terrible routines, I realized that having some plan, any plan, is so much easier than having no plan at all.
I am desperate to let go and try to find the strength to trust the process but it is the fucking hardest thing I’ve ever had to do.
Trusting is so hard, and the realization that everything in this life is actually almost, always out of our control has been sobering to me. We really have zero say in what life serves us up, the only true freedom we have is our ability to choose our response ~ Whoa.😳
As an amazing cancer survivor, who also lost her husband to cancer (WTF??) recently wrote to me “There are no what if’s, there is only what is.”
How profound is the realization that in order to have peace we need to accept where we are at. This is it, and no amount of fear or anger or anxiety or control is going to change what will be. None.
“Surrender. Lean into it. Focus on the what is.” I try to calm the urge to combust so many times each day
My yoga teacher gave me a mantra to chant. “Om, gun ganapataya, nama ha”
It’s directed at Ganesh, the elephant-headed god and one of the most worshiped deities in the Hindu faith. He’s known as the remover of obstacles and he’s in charge of bringing new beginnings.
Basically, he removes the bullshit and clears space. Jared laughs at me as I scream the mantra out several times a day, almost begging to be heard.
We’ve just come through one of the worst times of our lives, barely.
For nine weeks straight Logan vomited, cried in pain and weakened. She lost way too much weight, she grew pale and we spent more days in the hospital than I would like to remember. There were days when she didn’t know what was happening around her and there were even days when her mind failed her and she didn’t even know who I was. We were in full-blown trauma for weeks on end and we all feared the worst.
No one could figure out what was happening. Her oncologist was baffled. The thing is, we reduced what would be her final chemo dose in November and all hell broke loose.
This shouldn’t have happened.
We were convinced the tumor had to be growing. She was dying. We could feel it in our bones. Even Logan told me she wouldn’t make until the end of January. The conversations became very heavy and dark. She gave me a list of people she wanted to be with her as she crossed over. She started to write a letter to her brother. She apologized for not being strong enough to get better and she cried as she told us that she was happy we could finally be free of her cancer.
We did a lot of crying and although our life was in total distress something else very magical was happening around us.
We were being lifted up and despite feeling broken we had an entire community rallying around us that wouldn’t let us shatter.
“Don’t worry, we will carry you….” The messages flowed in and with it came cash and meals, and gifts galore and some of the most powerful and deep love we have ever felt.
We’d wake up each morning (after almost zero sleep) feeling desperate and by the end of the day there was so much goodness and kindness that had found its way to us, we felt strong.
We were completely torn.
How could this be some of the best and the worst times of our life all at once?
We met with our team of caregivers and discussed our goals of care with the hospice team. One of the hardest conversations I’ve ever had, yet so clear and freeing.
Our number one goal was to figure out a plan so we could spend as little time as possible in the hospital and as much time as we could together in our own space surrounded by our own tribe.
It was clear Logan was shutting down and giving her anymore treatment was likely going to kill her. We had to make a choice. We decided not to give her the final doses of the chemotherapy and let go of finishing the full protocol we signed up for nearly fourteen months prior.
We did an emergency MRI to be sure there wasn’t further spread of the disease and when we saw some minor improvements we cried because although we knew the chemo was in fact helping her cancer we also knew, it was hurting her whole body even more.
Out of desperation we started working with an acupuncturist numerous times a week. We spent countless weeks juggling new medications, and trying new vitamins and diets, and essential oil therapies. We surrendered to being forced to sedate her when things got too bad, we cleaned up vomit, cried our faces off, blocked out the bullies, and chatted endlessly and intimately with friends, family, nurses, hospice and healers, and basically in the end we decided it was time to give in and let go.
Jared finished working and as a family we prepared to make her comfortable and take this time together to figure out and learn what letting go actually meant.
And now here we are……
Weeks have passed since Logan has had her last dose of chemo and I’m pretty sure she won’t be dead by next week. 😉❤️🙌🏻
In fact, she seems to be turning a very small corner and although she has a LONG way to go she is a bit stronger each day. ❤️
Now as we look back we feel clear. With less emotion and panic, we realize it was true, the last dose of chemotherapy almost killed her.
Her system was shutting down and her body was telling us it was way too much. She’s had more than 300 lifetime doses of chemo and she’s far to fragile to handle any more right now.
Sadly, what really sucks is that she still has so many symptoms that are related to her tumor and each are a reminder of what we hate to be true. The chemo didn’t cure the cancer.
It has shrunk it in a few spots but not nearly enough to reverse all the effects or her deterioration.
Her blood pressure is still very much all over the map. Some days she’s strong and clear and other days she still pukes her guts out and we can’t even understand what she is trying to say. A tumor in the brainstem affects so many vital functions and even though hers didn’t look worse in November, it is wreaking total havoc at the size it is at.
So now what?
Well that is a big fucking question isn’t it?
Basically we don’t know.
Our acupuncturist thinks we need to take an approach of allowing her prana/chi and life force some time to return to her body before we knock her down anymore. He believes we need to nurture her mind, body and soul and start to heal her from the inside out.
On some level our oncologist agrees. More chemo might kill her but so will the cancer sooner or later. We are caught between a rock and a hard place.
We know we were on a roll at one point and the tumor was shrinking and her symptoms were improving with treatment, so stopping treatment will likely mean only one thing.
I don’t like to assume but honestly, this is an educated guess based on the fact that after 4 rounds of trying to beat this cancer, it keeps coming back.
There so much fear around not doing anything. There is so much fear around surrender and allowing time for recovery and healing not just for Loggie but for all of us. We all need time to recover, but feel like we aren’t doing anything if we aren’t doing something.
We feel like we are giving up and we feel like we are failing.
Fuck.
There is an option to try another type of chemo on a study but we don’t know if it is the best thing to do. Apparently just because you can, doesn’t mean you should.
This ‘maybe’ chemo, has a bit of a different approach, one drug blasts the tumor cells and the other drug cuts off the blood flow to the tumor. It’s a fairly new regimen and the results are promising but the treatment is long and hellish and not curative.
Nothing is curative at this point so we wonder, do we advocate to hit her with more poison right now while we have momentum and the tumor is shrinking? Will this be her her best chance at a longer survival? Or do we wait to see if this bloody thing will stabilize and give her some time to heal and get stronger and this will be her best chance at a longer survival?
We don’t know what the right thing to do is, and we have more questions than answers at this point, likely because there is no right choice anymore. There is no clear path; there is no ‘what if’s’- there is only ‘what is’.
I am currently researching all natural therapies, we are doing yoga, and we are all taking this time to focusing on what we each need right now. We all have our own resentment and anger and fear we need to move through. We are ‘in search of’ the answers and are open to whatever the universe serves up.
Jared has doing cross-fit like a maniac trying to get rid of his stress (on a good note abs are a win, win) 🙌🏻 and Brody is happy to be home and is taking some comfort in the fact our life not being in constant turmoil.
Me, I am writing my way through this, drinking more tea and less wine and spending more time on the mat with my sweet girl. Life is about as normal as its going to get but, still, there is a weird feeling brewing just underneath this lull.
It is almost like something is about to boil over but we aren’t quite sure how to turn down the heat.
We don’t know how to navigate this new place of uncertainty. We don’t know how to enjoy this ‘quality of life’ and just be.
Because all we want to do- is do.
Anything, something……
We are coming to terms with the fact that we are not in control of any of this. It is far greater than us, and letting go of control has been hard and full of deep personal exploration.
We don’t know what is right, and we may never know, so we are focusing on doing whatever feels right for each of us in the moment.
For Logan, it is simple. She is coming to a place where she can engage again. This is a place, where she doesn’t feel like she might need to say goodbye every time she says hello. She is getting up out of bed on her own in the morning instead of needing to be helped. She’s eating real food again and not just fluid through the tube. She’s made it to a few yoga classes and on the good days she is actually taking less medications.
It’s one day at a time right now but the funny thing we are learning it has always one day at a time. It is weird how we’ve convinced ourselves to believe otherwise.
Right now there is no preparation, no real plan, no rush, just now- just what is.
On that note next week is MRI week again. We are setting our intentions and hoping is will give us a clearer picture (pardon the pun) of what feels the most right in our hearts and we will know what to do next.
Peace, ✌🏻❤️
J
❤️🧡💛