Yep. Totally and completely overwhelmed.
I know I am not the only one. But I think sometimes the first step is admitting it.
Maybe it was overzealous to try to synchronize mine and Meghan’s 6 month follow-up appointments to coincide with the first 2 weeks in July and the February break.
My initial attempt scheduled 12 doctors , plus one MRI and one sonogram between June 27th and July 16th, (for both of us combined.)
It has mushroomed to include a Pituitary Stimulation Test and another ultrasound, 2 more MRIs yet to be scheduled, a possible muscle biopsy – pending a conversation between 2 specialists, a full day of work for me one day next week, Physical therapy 1-2x a week as we can fit it, 3 nights a week of swim practice, and 2 dentist appointments (that I PRAY don’t need follow-up!)
So, I waffle in between resenting the loss of my summer, and being grateful that I have July to get all this done.
The entire month of June I salivated for July. I couldn’t wait for schedule free days. Now I am frantically overtaxing my shredder as I organize all the tasks I label for “summer,” during the year. The July calendar makes me nauseous. Literally.
I mean we might have gotten bored eventually, but we have barely been near the pool. I say bring on the boredom.
We could take the bus. But that often involves the need for the subway, which I won’t do with Meghan, and lots of walking, which honestly she can’t do. So, we drive, fill the car with gas, head over a bridge and through a tunnel to a carefully pre-selected parking garage.
And, since there is no predicting, there is always a meal to pack. Never want to be caught off guard with a hungry Gluten, Dairy, Soy allergic kid.
Sometimes we are on time. Sometimes we are late. Always we wait, and wait.
Meghan is the most well-behaved child. I don’t lie because there is no need. I am sure she was a gift to me – while we can at times butt heads, her personality allows her to pack a book, her iPad, or something, and sit. For hours and hours. I couldn’t pull this off if she was any other way.
But, I don’t know if I would have a choice. There is no traveling to Manhattan at 4 pm, on a school night. It just can’t be for either of us. So we do what we must.
Today, before 8AM she was in the park, running the “fun run” of a local race that has been dedicated to our “Angel Meghan” for over 20 years. She ran for a quarter-mile – 2 and a half minutes, came in a close 2nd, and has been nursing her knees ever since.
I am in the basement, shredding, and writing while I wait for my overworked shredder to cool. Trying to get a few things off the “to do” list.
My head is constantly going – processing new information learned this week. Thinking. Asking. Wondering. Worrying.
Today is a good day. Daddy is home. The ultimate distraction for her.
We had a long talk this morning, me and my girl. I tried to push her to reach out to some friends. To go and be carefree like she should be. Even if its only for a while. Everyone has something we reminded each other.
I still can’t shake my need for order. I don’t need a psychiatrist to tell me my obsession with a clean house is tied to the inability to control much else in my life.
Cowden’s Syndrome – our curse, and our blessing. Sucking away hours that should be spent on the beach or in camp. Forcing a little love to grow up way too fast. Torn between my guilt that this mutation came from me, and my gratitude that she saved my life.
I lost my driver’s license today. Just the license. It fell out of my pocket. For $17.50 I ordered a new one on-line. Here’s to hoping that whoever tries to be me has a strong stomach, and a decent amount of stamina. They don’t know what they are up against.
The beach… and all her other plans – I will do my best.
Just trying to get by one day at a time.
As a young child a can remember hearing stories of rainbows in Sunday School.
This week I needed lots of reminders that I am not alone. God keeps His promises.
Yesterday we saw Endocrinology at MSKCC in NYC. They spent an hour and ten minutes preforming a detailed sonogram of Meghan’s thyroid. She was an angel – calm and patient. I watched the whole thing, uncomfortable with how much I am able to see on an ultrasound now. The things we learn through repetition.
It was obvious to me that the many nodules – well over 10 – are still there. At least three are quite large. I watched as they were measured, and my “numbers” brain frantically tried to recall the stats from December that had led us to January’s biopsy.
We spent an hour waiting on the ninth floor, the pediatric cancer unit. And as I have said before, and I will say again, if you ever need to count your blessings, I mean truly count them, I strongly suggest you swing by there.
Meghan played on her iPad as I watched. Chemo pumps beeping. Children from 2 to 20, some seasoned veterans, some terrified newcomers, attached as the poison to kill the evil cells drips into their body. Some sleeping, some resting, some running. And their parents. Dark eyes. Worry. Terror. Fake smiles. Bitten up coffee cups. “Count your many blessings count them one by one…”
“Mom, I am not scared of thyroid cancer. I am only scared if they don’t catch it early enough.” I knew what she meant. She went back to playing.
In the doctor’s office there was a moment for us to be relieved, kind of. The nodules are slightly larger, but are growing slowly. They are still in that same “precancerous” state, but we are not in imminent danger. No biopsy right now. We get at least another 6 months out of the thyroid.
Then there were the other conversations. The ones about hormone levels that won’t regulate on lab work. The MRI that showed a pituitary “diminutive in size.” The inconsistencies of these tests with her current development. The statement from the endocrinologist that this lab test (having already been repeated 4 times,) “defies human physiology.”
So he drew the labs again. This time at “his” lab. And a thyroid panel, and a few other things.
He’ll call me Monday. Then I will find out more about “human physiology.”
At swim practice last night I met a mom. She has an only child too, just about Meghan’s age. And she is BRCA positive. So, after a day of doctors, somehow we were placed in each other’s path last night. And, I had conversations with a virtual stranger that I probably haven’t had with some of my closest friends. There are no coincidences. Of this I am sure.
And this morning – barely able to move from stress and fatigue, salivating for a day of “vacation,” we dragged ourselves out of bed again.
I packed the bags – always bringing lunch and a few snacks, and we headed out – a little later than I wanted. As I crossed the bridge I had the sinking feeling that I didn’t have my wallet. Back across the bridge. Back home. Back out. An accident on the FDR assured me that I couldn’t use the $14 parking coupon I had printed. Into the $42 lot we went. We made it into the office at 10:03.
The vascular surgeon is uptown. He has been inside of Meghan’s knee 4 times, so he knows her well. This time we had less overall pain to report. But, of course he never felt the pain was connected to the AVM anyway. So I recounted tales from her PT evaluator, and her swim instructor about how difficult it is for her to run without limping, or to push off to start a race from the block I had his attention. The legs have different girth. The left is undoubtedly stronger then the right, having been spared the AVM. Do you take her for PT he asked? Um… constantly.
Fortunately we love Dr. Jill!
We took her out of soccer and dance and put her in swimming. There isn’t much else we can do.
Oh, and could you look at her wrist? The one she hurt at the school carnival almost 4 weeks ago. She was victorious at her quest to climb the rock wall. Stubborn, competitive child. But has paid the price since.
For a few days I told her to suck it up. I admit it. But it kept going. Knowing Meghan as I do, she will keep me abreast of every pain – but the SECOND it stops, its like it never happened. This one wasn’t quitting. Dr. Jill helped us. We tried a brace. Then another one. Then no brace. No better.
So as I watched the doctor manipulate her wrist I couldn’t help but remember my frustration the day after the carnival, when all of her friends walked around unscathed, and she suffered terribly with pain all over. I remember thinking how cruel it was that she had to make a conscious decision to suffer in agony the next day – if she wanted to keep up with her friends.
He examined it for what seemed like forever. Then he asked me who my orthopedist was. I laughed out loud. The one subspecialty we have NOT found – is pediatric orthopedics. So he asked if she had a rheumatologist. I said we were headed there July 9th. He said try to move it up, and call him after I saw her. She needs and MRI of that wrist.
“I don’t think it’s vascular…” And after that we will get one of the knee – just to be safe.
There went two more days off the summer calendar.
40 blocks away was the geneticist. He is the one we credit with saving my life. And I credit the angels with placing him in our path two years ago.
We spoke at length. He has more questions. More research. He has a theory. He will call me. He will send me the articles. The conversation lasted an hour. He is brilliant.
She hugged him and told him she wants to be a geneticist. We have a friend for life.
The people training on the new teacher evaluation system in NYC frequently declare “This is going to create more questions than answers.” I don’t know why I find the system to be perplexing. I should be used to it by now.
It rained tonight. Thundershowers. They have been happening a lot lately. Maybe I need a lot of reminding. The rainbows are there. The promise remains. Nothing happens by accident. God’s timing is perfect.
I am sitting in the basement on the computer trying desperately to ignore the cricket serenading me from some other corner of the room. My family has been asleep for hours. Silently I have struck a deal with this insect, that if he stays far from me, I won’t try to squish him.
Not a big bug fan, and since a quick google search shows me a photo of one of his distant cousins, I have strengthened my resolve not to meet the cricket tonight. I don’t mind bugs, when they live outside where they belong. I just don’t like them taking residence in my house!
So, he continues to sing, as I put 4 stamps on the CD of the sonograms of my abdomen from April and last Novemeber. I included the reports and a cover letter to the oncologist. Off they will go tomorrow, and hopefully they will safely arrive. See I am really and truly ready to hear the definitive word that the spleen stays. One more week…
Week – what a week it was. I swear I am still sore from the boxes earlier in the week. A true sign that I lost a lot of strength post operatively. But, I am moved in. And, after 2 hours on a Friday afternoon after the students, and most of the teachers had left – I am largely set up. Finally!
Meghan loved her 4th grade teacher, even if it isn’t the one she originally wanted. This one has all the skill, kindness and compassion of the other. It will be a great year for her – academically.
Still so many medical questions unanswered. I am so intrigued as to how a pituitary that is over working can be too small. I am even more intrigued that this keeps only me, and apparently the cricket, up at night.
Answers. I need answers instead of more questions. But I fear it just isn’t to be. So, I will head to bed before I am forced to meet the insect that has been singing my lullaby for the last 2 hours.
So my little girl took some of the influence of her Dad and has taken a liking to comic books. She has been reading them on her Ipad, and although I might not admit it to either one of them, I kind of like the idea. I like Superheroes, and their “Good beats evil” message. I know it doesn’t always work out that way, but she is 9…
I sat in the MRI room with Meghan tonight – again. And even though it is a wonder I could think of anything over the banging of the machine, and the remnants of this migraine I have been fighting for days, I kept thinking of bookends.
Yep, bookends. See, back in June, on the first day after school was out for the summer we went for an MRI of her knee. It was a Thursday, the Thursday before July 4th. So, how ironic I thought, when earlier I was sitting in another MRI, this one of her brain, on the Thursday before Labor Day.
Bookends. Our summer ends the way it began, waiting for test results. Although I am starting to get the feeling that this testing and waiting will transcend all seasons. I will just notice it more in the summer – the season where I have one full time job (Mom to Meghan,) rather than two (Mom to Meghan AND teacher.)
We do not accept anything less than an answer that makes Mommy comfortable. When the doctors tell me that puberty is just starting earlier these days, I buy it – to a point. When they tell me to consider all the hormones in the milk, and the chicken, I raise an eyebrow. My girl who has been dairy free since she was 15 months old, and has almost never consumed a piece of nonorganic chicken, who is at or below the weight for her height, and who has a mom who went through puberty LATE, should be one of the early ones… I just don’t buy it. So when the hormone tests don’t match, and I get doctors refusing to answer me, I push harder. That is what the MRI was today. My fault. I needed to have them rule out a pituitary tumor. We have Cowden’s Syndrome. We grow things. Someone should check. Just sayin… Then, when the results are clean in a few days I will breathe deeply and accept that this just IS.
And the recurrent strep… well lo and behold, the ENT said there is regrowth of the tonsil tissue. He wants to see her the next time she has strep. He shouldn’t have to wait too long. He also told me the right lobe of her thyroid was quite enlarged.
So we wait for the thyroid panel, and wonder if it has changed drastically. And, we think of those nodules on her thyroid and the doctor who told me they will turn… not if – but when.
We started the summer at the doctor. We spent most of the summer at the doctor. Scan this, check that. It will never happen like this again if I can control it, but it was necessary this time.
And in between the bookends of MRIs, we fit in some fun stuff. There were some great play dates. a day trip to the beach, some swims in the pool. a FABULOUS trip to Disney, a week of Vacation Bible School – (although not our “favorite”one.) There were some lazy days, and lots of just being together time. We can get a lot of talking in on all those trips to the doctor.
I guess the summer wasn’t a total loss, and yet still somehow I feel sad. Cheated. I stress at the thought of the scheduling complications being back at work brings. Holding up the appointments of a regular kid (eyes, orthodontist, swim class, PT, dance…) is tough enough. Complicate it with Cowden’s x2 and it gets hairy.
Maybe I feel like this every summer. Maybe I just love my girl too much. Time marches on. School next week ready or not!
“It’s NOT fair Daddy!” Came the screech from the basement. I held my breath.
“You can’t do that Daddy! It’s NOT fair!”
When I heard my husband return the challenge with an “Oh yeah? Watch this!” I knew all was well. The giggling that followed sealed the deal.
I couldn’t help but find it a bit ironic that of all the things that have gone on in her life, she chooses a helicopter game in the basement with her Dad, to shout the words,”IT’S NOT FAIR!”
She didn’t use those words once, all summer, when we spent what I equate to an OBSCENE amount of hours in doctor’s offices and waiting rooms. She didn’t utter those words as she was poked and prodded and asked the same questions over and over. “They never find the answers anyway, Mommy.”
She didn’t tell me it wasn’t fair, when instead of planning playdates, or camp experiences we were trekking back and forth to Manhattan, for her, or for me. She simply wiggled in the play time when there was room.
This morning, when I sprung on her the idea that she needed bloodwork, after the bank, and before the orthodontist, she could have EASILY told me. “It’s not fair!” And I would have understood. I know very few people who have given up more blood than she has. And when the lab was full, and we had to come back later, so she could think about it all day, she definitely could have told me, “It’s not fair!” But she didn’t.
This morning when we learned that her braces are imminent, and that she is going to need to contend with them in addition to her new grade and ever changing body – I expected a yell. Nope. “Won’t it be great to have them off before most of my friends even get theirs on?”
So as I scheduled one more MRI this week. This one for her, to make sure the pituitary is its proper size with no extra features… I thought it would be a big foot stamping, “It’s not fair!” Nothing. Just the typical, “Can you stay, and will I need a needle?” Followed by, “I hope I can watch a movie this time because I don’t like having my head done.” How disturbing that this will be her third brain MRI.
This has been one hell of a summer, following one seriously wild spring. I have lost count of the appointments, and it is probably better. They aren’t going anywhere and we will continue to have to roll with it. As the last week of summer vacation comes to a close, and I lament the lack of relaxation, the cleaning that never happened, the day trips that never came to pass, I want to shout, “IT”S NOT FAIR!”
But then I look at my 9 year old. Wise beyond her years. Content to live in this house where she is so loved and appreciated. We have had many talks about the suffering of others through the years, and especially this year. She knows she is not alone in having a tough path to travel. She also knows it could be worse.
Maybe that contributes to the poise and grace under pressure. Maybe that is why she is so insanely mature. Or maybe, in the midst of the chaos that is Cowden’s Syndrome, we – her father and I – are just the luckiest parents in the world.