Triage. The word hangs with me like the memories of countless Emergency Room visits.
Triage. Take care of the most serious first.
It’s the reason we might wait hours for stitches, and barely a moment for a trauma.
I get it. It makes sense in the ER. It also makes sense on the battlefield, or in other places where there is widespread injury to be treated.
The thing is, you typically don’t stay in those places FOREVER.
Places we equate with triage are not places of comfort. And that’s where this life with Cowden’s Syndrome can get tricky.
You see, lately I can’t shake the feeling that life is triage. 24/7/365 damage assessment, and handling the most critical first. Vigilant. Hyper-vigilant. ALL. THE. TIME.
When you live with a chronic illness, a syndrome that causes cancer by its very definition, it is so easy to get wrapped up in monitoring and preventative care. And then there are the times that you go for those monitoring appointments and they require their own follow-up. This condition can easily morph into a beast that can swallow you whole.
And we’re at it times 2.
What I refuse to allow this syndrome to do is take away any more from my daughter’s life than it has. To the best of our ability, she will do “teenage” things, and she will do things she enjoys.
But, lately that has become quite the juggling act.
I am monitored twice a year by endocrinology (post thyroidectomy), my breast surgeons, and dermatology. I am monitored annually by gyn oncology, and oncology. This is post-bilateral mastectomy (stage 1 DCIS) and post hysterectomy. I am monitored every 5 years for colonoscopy. I am also monitored with abdominal ultrasounds for 4 hamartomas on my spleen, and a cyst on my kidney. This may not seem all that impressive, but those are just the appointments if everything goes well. That’s not additional scanning, blood work and biopsies. None of them are close to home either.
Not to mention, I am still searching for a local primary care doctor. In addition, there is dental work, both routine, and the emergencies the stress from grinding my teeth keep causing. I’ve been referred to another oncologist who specializes in genetic diseases, and I need to get in to see her. I just completed vascular surgery, with its pre and post op appointments and recovery as well.
That’s just me. Me, and my full-time job. And, like every mother, my needs are not the most important.
My girl sees endocrinology twice a year. She is still, 4 years post-op, trying to get thyroid function balanced. She sees gastroenterology, and dermatology twice a year. She also sees an adolescent gyn twice a year, courtesy of precancerous tissue already uncovered in her teenage uterus. She sees a chiropractor every 2-3 weeks for pain management. Right now, amid diagnosis of the small brain tumors, she is seeing neurology every three months for new MRI scans. She sees orthopedics every 8 weeks. They have been monitoring her knee for years, and recently stubborn tendonitis in the shoulder. There have been a few MRIs of late. She has seen physical therapy weekly since the fall, and is now working on twice a week.
She is tired. Partially because of her schedule, and partially because of her sleep patterns. Despite a regular bed time, she struggles to get quality sleep. It is hard to turn her brain off, and for her to get rest.
She has developed Post Traumatic Stress Disorder (PTSD) and anxiety, secondary to consistent medical trauma. She is working through it – but, like everything else, it is a great deal of work.
She is awaiting word that her service dog is ready. The call could come any time in the next 6 or so months, but we are hopeful this dog will help her through what can be some trying times.
She is an honor student. She is a swimmer – at least 5 days a week, for 12-15 hours a week. She is in weekly vocal lessons, and a theater group that meets 3.5 hours a week. She enjoys a local church youth groups.
She has food allergies – restricted from dairy, gluten and soy. And seasonal allergies to all things pollen.
None of this includes normal things. Like dentist and orthodontist visits, or even haircuts.
It is easy to get isolated.
She has a strong sense of what is right and wrong, and can be rigid in her perceptions. But, life has shown her things most adults, let alone people her age, have ever seen. Just as that strong mindedness flusters me, I refuse to try to break it down. It is that same will that has gotten us where we are.
And where we are, is in TRIAGE.
My iphone calendar is with me everywhere. I prioritize swim and theater over doctors when I can. Physical Therapy is a high on the list right now for pain management and strengthening.
Vocal lessons keep her going, as she can sing herself through a lot of stress. Theater is just a fun group of children, and I am not willing to sacrifice that.
I have a list by my desk of “next up” appointments, and because our availability is so limited, I am often booking months out. We travel to most – NYC or LI. Short on miles – but up to 2 hours each way – often.
We stack them when we can. Two appointments are a bonus, three is a banner day.
And every year about this time I dream of a summer light on appointments. I’ve yet to see it come true. Truth be told, almost every school holiday and every vacation is cluttered with things we need to do, but would rather not.
There is a blessing in knowing what we are fighting. There is blessing in having a warning system in place. But, there are still some days when I’m totally overwhelmed that I wish I didn’t know so much.
Triage.
Triage means that right now the physical and emotional health of my teenager trumps all.
So she swims 5 days. We do PT 1-2 nights after swim. We see “other” doctors midweek on the one day there is no swim. We do voice, and theater on Saturday.
I make my appointments on weekends when my husband can drive. I make my appointments a year out so I can stack three in one day in the summer and on February break. I schedule our surgeries for February of Easter vacation when I can.
I plan our fundraiser now for October, so as not to give it up, but in hopes of finding an easier time.
I research at night. There is always a need to learn what most of our doctors do not know.
I write, when I can. I love it and I miss it, but time just doesn’t seem to allow.
Hair, nails, eyebrows, and things I used to enjoy are forced into holes in the calendar, every once in a while.
Dust builds in places I never used to allow it.
Friends, well I have to trust they get it and they’ll be around when there is a change in the current status of things. I miss them.
Triage.
It starts early in the morning, waking up a teen who just hasn’t slept well.
It continues through the day – my job and her school.
After school is all about making it work. Swim, PT, or whatever therapy the night brings.
There are often phone calls, requests for lab reports, or battles about IEP needs… Emails go through the iphone.
Usually we are out of the house about 13 hours.
At night we pack everything so that we can be ready to begin again.
Triage.
Most critical right now is allowing my teenager to find her way, in school, in sports, and in her life. Most critical is giving her very real scenarios where her disease does not define her, and she is able to achieve in spite of her challenges, not because of them.
In order to make this happen, everything revolves around her schedule. There are opinions about that in all directions. There are people who would tell me I am creating an entitled, self-absorbed human. I don’t pay them much mind, because they haven’t met her.
When I signed in to be a parent I knew I’d be all in. I just never saw THIS coming.
Balance needs to always be in place, where the physical needs of either of us are never overlooked. However, non-essential appointments CAN, and WILL be scheduled around our availability. She will be a happier, and more tolerant patient when she didn’t miss something she loved with three hours in traffic and two in the waiting room.
Triage is meant to be something you experience briefly in times of crisis.
The “fight or flight” response is not always supposed to be on.
But it is.
At this time in our lives we may not always make for stellar company, although ironically, we’d love to have more of it.
At this time, we may say no constantly, to the point where you stop inviting. Trust me. We’d rather go. We actually enjoy your company.
At this time, we are so busy surviving, and taking care of the most critical needs, that anything not immediately essential gets passed by.
We are constantly evaluating order of events, but TRIAGE is fluid by definition. Unfortunately there are so many situations and scenarios, it is hard to see through them all.
Even at our toughest times. Even at our most overwhelmed days. We can look around and find our blessings. They exist in big things, like being able to physically attend 5 practices a week, and little things, like being able to WALK around the school without hesitation or assistance.
We are aware of those suffering illnesses far beyond our grasp. We are aware and we are grateful for the health we do have.
We are also tired. And lonely. And often overwhelmed. We also know this is the way the plan must go for now. And one day it may change.
Triage is fluid.
Life is fluid.
We all do the best we can with what we have where we are.
And we remain steadfast
#beatingcowdens.
beatingcowdens 