And that might be an accurate description of my current assessment of living with Cowden’s Syndrome.
It’s so hard to put into words. Those who don’t understand are likely to think I’m insane.
When you know your mission, you carry it out. You are driven. Focused. There is something that needs to be accomplished, or an adversary beaten. You have a crystal clear goal.
As difficult as those moments have been, I am starting to find the ‘forever’ aspect of this syndrome to be overbearing at times.
Some days it seems no matter which hurdle we clear, something else is in the line of fire.
I waffle between doctors who are either not interested, or are so overworked that they lack the time, energy, or desire to research and think from the alternate view required for a 1 in 200,000 mutation on the PTEN (tumor suppressor) gene.
Research. Real research (yes, I am smart on the internet and know what to read and what to brush off,) is surfacing so often that it is hard for me to even keep up. I don’t expect my doctors to be on top of it.
I expect them to treat me as a partner in my own care.
They have gone to medical school. I have not. However I have more extensively studied Cowden’s Syndrome than they ever will. And I still have a great deal to learn.
Gone are the days when “doctor knows best,” and I should comply without question or explanation. This is my life. This is my daughter’s life. And wherever I can assist, I intend for those lives to be long and strong – physically, mentally and emotionally.
Tuesday the 26th was my “doctor day.” It became a necessity years ago that I take a personal day and “stack” my annual appointments. This makes the day out of work worth it. Some years things are smooth. Other years, well… not so much.
After a fall at work in January, where my 5 foot 7 frame ever so gracefully landed on my right shoulder and implant, I have been uncomfortable. The implant that was previously easy to ignore was prevalent in my thoughts all day. It is not ruptured, and I was able to get MRI confirmation of that. However it is just annoying. It sits slightly off place, a constant reminder to my brain and body that it is THERE. I am grateful it is not painful. I am not content to live with this situation indefinitely.
My discomfort, and the knowledgeable people I share some Facebook support groups with, let me down a path of research on silicone implants.
I learned a whole bunch of things. Most of those things are probably inconsequential in my life, but they made me angry. I had double mastectomy with immediate implants in 2012. In 2016 the implants needed to be replaced way ahead of schedule. (With a maximum of about 10 years on average). I had one breast surgeon and two plastic surgeons.
No one spoke to me about a condition called BIA-ALCL (breast implant associated anaplastic large cell lymphoma). The risk is minimal, but it exists. No one ever talked to me about it and allowed me to make an informed decision. We have a rare disorder that predisposes us to greater cancer risk. No one has thoroughly studied the occurrence of BIA-ALCL, and certainly no one has considered it in relation to PTEN Mutations. No one knows. But, I deserve the uncertainty discussed.
Further down the same page is the screening recommendation that women are screened via MRI for silent rupture 3 years after the first implants, and every 2 years following.
Not a word. Ever.
There are other pages. Solid articles. But if you read the above link you get the point.
So I saw my breast surgeon first. All was good on exam. That was a relief. I began a discussion about the above, and was really upset by her flippant response. I was told I was reading too much on the internet. I was told that there was no conversation about possibly removing my implants. Granted this is not something I was ready to do tomorrow, but it was something I wanted to learn about. I was told I would be subjecting myself to unnecessary surgery and she would counsel my plastic surgeon against even entertaining it.
I honestly felt like I had been hit.
I asked her what her thoughts were on BIA-ALCL related to Cowden’s Syndrome. She had no answer. I asked her how many PTEN patients she sees. 20? No 10? No 5? No, less than 5.
I asked about screening MRIs. I was told they were “unnecessary”. I referred her to the above link.
I could not believe that I sat in the middle of a major cancer center in New York City. I felt violated and angry.
Next came my oncologist.
She is a kind woman with very few answers or helpful tips on risk management. She pretty much looked up Cowden’s and checked that I have no breasts, no uterus, and half a thyroid, so I should be easy to manage. I asked her questions about bone density,and heart health, (30 years of thyroid replacement, 7 years into forced menopause) and she simply said, “I don’t know.” I asked about the lymphangiomas on my spleen that currently outsize the spleen itself. She started to talk to me about spleenic “cysts” but I drew her back to lymphangiomas and the vascular component that often affects PTEN Patients. I have not desire to lose my spleen, nor do I have a desire to harbor a potentially destructive organ. We settled on a bone density and an abdominal sonogram to measure the lymphangiomas. At least this makes sense to me.
Off to the otolaryngologist with a hopefully not PTEN problem. He did vocal cord surgery for me 2 years ago to remove some growths. This day the vocal cords were clear. The right ear however has been an issue since September. I spent a bit of time treating for migraine, and blaming the chlorinated pool spectator sections. I had 4 doctors prescribe antibiotics when they saw fluid in my ear, and another a short course of steroid. All cautioned me about hearing loss. I regained my sanity to some extent when a friend gave me Mucinex sinus max. Something about it helped the pressure. The doctor got a look in my ear and used his camera to show me the fluid inside the right ear that is not draining. He also looked deep in the ears and told me something was “off” with the ear canal. But that was as far as he would or could go. He gave me the name of a doctor to treat me. He also told me to get a hearing test, and to understand that they must find a cause prior to any treatment. April 18th was the first I could get. Mucinex for all till then.
The endocrine surgeon came into my world post diagnosis in early 2012. I believe her function was to evaluate regularly the remaining 1/2 thyroid, as thyroid is one of the greatest PTEN related cancer risks. My thyroid was partially removed in 1993 due to a diagnosis of “multi nodular goiter.” At the time, the prevailing wisdom was to leave one of the lobes intact and suppress it with high doses of synthroid, keeping the TSH (Thyroid Stimulating Hormone) low. For years I operated with a lower than normal TSH, but it worked for me and seemed to keep the remaining tissue quiet.
When I was diagnosed and my team changed, so did some of the management theories. This endocrine surgeon, who was only managing my medication as a courtesy, not as a regular practice, preferred a slightly higher TSH level. We jousted a few times about fatigue, and other side effects that come with adjustment. We had made peace on a split dose, until I had my levels measured in January and they were WAY to high for my physical comfort zone. After my initial glee that I was not totally losing my mind, and that I needed medication, I started to wonder why the level change. My weight was consistent…. my activity level consistent…
She did a routine sonogram of my neck in the office. For the first time in 7 years she paused. “There are small calcifications. They were not there before.”
I asked about a biopsy and she told me she would not even know what to biopsy. She’d be “guessing” as the thyroid bed is undefined. She said she wanted me to consult with a colleague who is an endocrinologist well versed in molecular genetics. She told me it was no rush. She was going to Email his staff, and I could reach out when I have a school break in April.
That was Tuesday afternoon.
Wednesday morning I received a call that it was suggested I book the first available appointment. I did so for March 12th.
I was told to obtain an ultrasound for basis at a local facility.
Thursday morning the phone rang again directing me to get the ultrasound at the hospital before I see the doctor.
Things seem to have moved from very casual, to lets not dawdle, quite quickly.
I’m not emotionally attached to too many non-essential organs anymore. I’m vested in getting anything out before it causes me trouble.
Life is a juggling act.
I have plans.
Doctors appointments get in the way.
I know people who use sick days to vacation. I use mine on the Gowanus Expressway.
I want to get it together, and see people. I want to have casual conversations and catch up on people’s lives.
I will. One day.
But for now the energy remains focused on a kind, lovely, compassionate teen, and keeping these two “Rare” ladies in their best health.
Oh, and that fall in January left me with a pain in my right foot that just won’t quit…
Tick tock… the waiting continues…
And we remain forever
I’m aware of Breast Cancer. As a survivor now of 6 years and the daughter of a 21 year survivor, I am aware as I dry from my shower facing my mastectomy scars every morning, that breast cancer is reality. As my Facebook feed and my memory are both too full of those we have lost and those who still face this disease, we are aware. What I wonder, is how much help is the awareness? It is a topic that could be debated forever, but I’ll change gears first.
Something else I am very aware of is the PTEN gene located on chromosome 10q23, and the perils its associated mutations can cause. So when the PTEN Foundation let us know that 10/23 was designated PTEN Awareness Day, we were all in.
This blog has, for years been designated to the ups and downs of this mother- daughter duo dealing with Cowden’s Syndrome, the diagnosis we both received in late 2011 after a PTEN mutation was first diagnosed in Meghan, and weeks later in me.
The few years following were an absolute whirlwind of appointments, scans, screenings and surgeries. We worked to keep our heads above water and just exist. We considered keeping my job, and maintaining honors status in her school quite the accomplishment.
We were told things over and over, like “don’t let it define you…”
I’ve got some news for you. You can only walk so far into the fire without retaining the scars.
True awareness of PTEN for us comes with comprehension of the gravity that you have to remain in a vigilant stance of preparation, awaiting attack from your own body at all times. PTEN patients have ridiculous cancer risks pretty much all throughout, and the VIGILANCE required to stay ahead is utterly grueling.
We are faced with choices to keep the most high risk organs, or remove them prophylactic ally. We are asked to play the odds. With our bodies. All the time.
With Meghan the AVM (Arteriovenous Malformation) in her right knee, though quiet now, has caused damage she will deal with forever. She is 15. God willing she will walk on those legs another 80 years, each day aware of the pain, and of the symmetry removed from her body forever.
When you have to be vigilant, you have to plan. There are trades. You have to decide if you’ll miss school with friends and fall behind in classes or give up the breaks designed to recharge you.
There are no breaks. February – months away has 3/5 of its break and 2 other days devoted to appointments. Martin Luther King Jr. Day in January. Yep – that one too. Don’t worry, the brain MRI is scheduled for April break….
You have to pick and choose. And the decisions are hard. You want to give it all to everything, but HOURS of your world are wasted in bumper to bumper traffic, waiting for the hopeful news that you have another 6 months before you come back. And if, in fact you don’t get that news the schedule is tossed and it’s game on for scans, analysis and biopsies.
The pain. No one can really tell us yet from why, but it seems to exist throughout. The fatigue. Maybe the thyroid issues, maybe some immunological stuff. Maybe some connection yet to be determined. But it’s real.
It’s as real as the number of times we had to decline invitations before most people stopped asking.
We’re not blowing you off. We’re holding it together – by a shoestring.
Chronic Illness is hard to live, and we get that it’s difficult to watch. But, it’s real. And short of a cure, it will never “run it’s course.” It will not BE us, but it will be PART of us – FOREVER.
“You don’t look sick…”
“You don’t look anxious…”
No, as a matter of fact she looks strong and determined. She’s been practicing for quite some time.
Sometimes I have to bite my tongue to keep from replying, “You don’t LOOK ignorant either – but at least you can fix that if you WANT to…”
Our rare disease journey has opened our eyes to not only PTEN disorders, but “Lhermitte-Duclos disease,” “Nail-Patella Syndrome,” “Lynch Syndrome,” “Spinal Muscular Atrophy,” “Muscular Dystrophy,” “Neimann- Pic Disease,” ” Neurofibromatosis,” “Acute Myeloid Leukemia” to name just the very tip of the iceberg. I am more aware than every that everyone struggles.
I’m also a big fan of real pure awareness, for the sake of learning something about other humans I share the planet with.
One of the humans I share my home with has grown up in a totally different direction courtesy of this disease. And while I am grateful for her diagnosis, as it surely saved my own life, I am sad that she has had to see so much, and manage so much already in her life.
So today, on 10/23, if you’re not living with it yourself, direct yourself to http://www.PTENFoundation.org, or the PTEN Facebook Page and learn an little more about PTEN.
My own girl is working every day to make herself better, physically, mentally and emotionally. When I have down days, or I just don’t feel well, she reminds me to forgive myself. “You have it too Mom.” Indeed I do, and it’s quite a ride…
Together we prepare for the climb each day – and seek out that ‘One Perfect Moment’
For as much as this disease has taken, I am grateful that she is starting to take back control, and is finding her voice as an advocate for herself and others. (And I love listening to her sing too…)
|Bring It On the Musical – One Perfect Moment Lyrics|
Bring It On the Musical – One Perfect Moment LyricsI’m not freaking out, I’m really okay
I’m totally chill or I will be someday
‘Cause I’m so near the top but there’s so many mountains to climb
There are plans to be planned, drills to be drilled
‘Cause this dream that I’ve dreamed is becoming fulfilled
And I plan to enjoy it but right now, I don’t have the timeFade in on Campbell, an average teenager almost grown
Close-up on average grades from the average life she’s known
Now zoom in the lens on the rest of her friends as she stay alone
Doing the work, getting it right
‘Cause I know we’ll have to be practically perfect
I’m seventeen, there are so many things that I can’t control
I know that if I can just stick the landing
My cousin Kim stood, graveside, holding 2 flowers over the 7 month baby bump under her black dress. Two roses. One was red and the other was pink. One was for her, and the other for baby Mackenzie. It was time to lay to rest her husband, and the father Mackenzie will only know through the stories and photos a strong community will share with her forever.
Exactly a week earlier we gathered together in joyful celebration to shower Kim and Nando with love for Baby Mackenzie, due in November. Little pink clothes, laughter, anticipation and love for a baby they waited so long to have.
The next day he was gone. That fast.
He was one of five children, and part of a large family.
My family, Kim’s family is large as well. Our fathers were brothers, in a family of 9 children, and although mine passed away in 2013, the love shared by all runs deep. We are close to 30 first cousins thick. The second cousins are starting to increase in number.
I sat in the funeral home in stunned silence most of the time. But, the room was crowded, the lines were long, and the hugs and tears were all genuine.
I didn’t know Nando as well as many others. As a matter of fact, I wish I had known him better. Clearly, judging by community response and turnout, he carried the same heart as my cousin Kim in his larger than life body.
I can’t make a bit of sense out of any of it. So I have to lean on my faith, and do whatever I can to offer support. Sometimes tragedy just is…
Kim is strong, almost stoic. She is a mother already, carefully shielding my newest little cousin from the anguish in her heart. This beautiful baby will bring joy to so many.
We do not know the hour…
Tomorrow is not promised on this earth…
When we talk about #beatingcowdens, we talk about vigilance. We talk about a warning system. We already know what we are up against. So often I can’t help but wonder how many people would give anything to have had warning.
It’s all perspective. Sometimes I have to pause here and tell a story that is not about us. That is not about Cowden’s Syndrome.
There is a generosity of spirit that lives in so many. I witnessed it last week in a community outpouring of love.
My Uncle put it into words about his son-in-law.
Although I am not surprised.
I have received that generosity of spirit from Kim and Nando, and the family so many times.
Pay it forward. The idea that you do good things with no expectation of repayment. That’s how they live. This week we got to witness a little bit of the good that comes from living life for others.
More than one person my cousin works with, sat with me at the funeral parlor to ask about Meghan and I. I didn’t know them. They knew of our story through Kim.
Currently our fundraiser for the PTEN Foundation is scheduled for 10/28. I contacted my Aunt, and asked if we should cancel. I needed to know if it was too close. I would never ever want to be disrespectful.
Don’t cancel. Kim plans to be there.
I guess that’s just what family does for each other. And there is always plenty of room at our table.
Pull up a chair. We’re in it for the long haul- together.
Almost 15 years ago you entered this world kicking and screaming. You scared the heart out of us, the doctors, and the nurses. The NICU nurses called you “Miss Attitude”. Even in distress that August day you showed them all you were not to take anything without a fight. You made me a Mom under the craziest circumstances, and looking back, maybe they were fitting. How could we know back then, when we were discharged, a few days later, and all of NYC went black in the blackout that no one will forget, that was just the beginning of all things epic?
I look at you now, taller than me, beautiful and smart, athletic and talented, and I burst with pride. You are good in your core. You are pure in your heart. You hold yourself to a fiercely high standard, and you hold others there too.
We’ve long passed the point where summarizing your history is easy, or even practical. Truth is, most people’s heads would explode to hold inside the medical journeys we’ve taken, and the emotional bumps and bruises along the way.
You made a decision many years ago, that your struggles would be only part of you, and that they would NEVER define you. You want to achieve, and you do achieve, in spite of your struggles, and not because of them.
Facing your teen years with the cloud of Cowden’s Syndrome always hanging nearby is daunting, to say the least. You possess knowledge, statistics and realities about your own body that no one your age should have to try to understand. You have more memories of trips into and out of operating rooms than most people would ever know in a lifetime. You have been held down, poked, prodded and examined so many times, even I sometimes try to forget. You have been through Physical Therapy and rehabilitation so frequently that we have the numbers for multiple surgeons and the best PT in the world, saved into speed dial.
Before you were 11 the threat of cancer stole your thyroid, and as normal teenage hormones kicked in, yours were just a bit more complex. Precancerous cells in your uterus before the age of 12 necessitated more synthetic hormones, and your body… sigh. Beat up and abused, no wonder it gets annoyed.
The PTSD (Post Traumatic Stress Disorder) diagnosis was not a shock, rather the exclamation point on the end of a very long sentence. Before the start of the next paragraph, in what will be a very long story…
The struggle to deal with it takes place mostly behind closed doors, and most people would have no idea.
You just keep going.
It’s not a sprint, it’s a marathon.
The longer, and harder the battle, the more determined you become.
You excel at school. You continue to make strides at swim. You are learning to use the beautiful voice you were gifted with.
You are my pride, my privilege, my daughter and my friend.
You have strengthened my resolve. You have helped me fine tune my “Mamma Bear”.
You have helped me learn self-restraint when I have had to allow you to handle things on your own.
You have helped me become a better human.
Sometimes, my dear, I want to scream, as your stubborn, rigid, principled self, clashes with my “I want to fix it” attitude. And yet, I count myself lucky in this day and age to have a daughter who is so sure of her principles that she will not bend to the whim of the crowd.
I wish for you the ability to find joy and laughter. I wish for you, to be able to smile among the good people you meet, and allow them into your world. I wish for that the kind souls you meet are able to understand that there is more to you than initially meets the eye.
I want you to know that you are good enough, and that you are enough. Yet, I want you to remain hungry and goal oriented and kind and compassionate too.
A wise woman (your grandma) once told me, you do more changing in your 20s than you ever do in your teens. You will continue to grow and learn and change, and develop your personality. Set your goals, meet them, exceed them, or rewrite them. Life is fluid, and full of change.
No matter how hard things get, never ever lose HOPE, and NEVER GIVE UP.
You gave me a beautiful necklace today. The compliment of being referred to as “Wonder Woman” is about as high praise as a mom of a teen could ask for.
If I possess those qualities they are because of you.
We will continue to take this long journey. The road will never be smooth. But I would take no other path if it meant traveling without you.
Together we remain #beatingcowdens.
Thank you my dear. Thank you for allowing me to be part of your world.
Thank God for selecting me as your mother.
Love you always,
You’re small but mighty. You’re a force to be reckoned with. You are a role model, and an inspiration. You are a survivor. You never give up. You were my very first hero.
I’ve learned a whole bunch through the years, and I’m quite sure I still have a ton to learn. This year, as you celebrate your first Mother’s Day without your own mom, the enormity of that is not lost on me. I just wanted to make sure you know that.
You raised three of the most different humans imaginable. And, yet, you did an awfully great job on each of us. That’s mostly because you did the best you could to give us what we needed. An impressive juggling act.
For years you told me “You’ll do more changing in your 20s than you ever did in your teens”. Truth. But, did you stop there so as not to scare me? The changing in my 30s- I still shake my head in amazement. And I’m quite sure now, half way to 50 – I’ll look back at 40-year-old me and find a stranger.
Nothing is easy. Nothing ever was. I remember.
Yet, I don’t remember a life couched in sadness or despair. I remember focus, drive, determination, and a whole lot of Never Give Up.
I remember a single mom who worked two jobs so we could have all that we needed, and lots that we wanted.
I remember you positioning us with your parents, so that right upstairs would be stellar role models. I know it must not have been easy. We don’t always agree with our parents. And, now, as a mom myself, I get how it might have been a challenge for you sometimes. But, I can tell you with confidence, it was right. Living downstairs from Grandma and Pop was a fantastic, life changing move. Thank you.
I remember the hours you worked, in the city all week, and then on your feet every holiday and every weekend, serving other people’s parties. I can only imagine how tired you must have been. Only now do I have a much better idea. And, I have a much better understanding of how you just kept going.
You made choices. You chose to keep us involved with all our families. You could have chosen differently. You had every right to. Thank you for choosing to allow me to choose.
You modeled for me, things I never knew I’d need.
And every day, as I dig deep to give everything I can to Meghan, I think of you.
You, and “The Little Engine that Could,” and Tinkerbell too.
Thank you for being tough as nails, and soft as a marshmallow at all the right times.
Thanks Mom, for the things I can put into words, and the things I can’t. Thanks for the stuff you just know, and the things in my heart.
Please know, no matter how old I get, or how busy you think I am, a call, or a visit, or even a text with my Mom brings a smile to my face.
Every. Single. Day.
Happy Mother’s Day.
Thank you for preparing me for #beatingcowdens, long before we had any idea of what was coming.
I love you forever.
I love you for always,
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 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.
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.
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