I got a call this morning from Dr. S. The biopsy is scheduled for Tuesday at 12:45. Pleased to have it scheduled, quick math told me it would still be a week before we had a definitive answer. But at least I had the wisdom to shut my mouth and be grateful to have it scheduled.
My next question was about anesthesia. Had they decided to give it? In FNA (Fine Needle Aspiration) thyroid biopsies, anything more than a numbing lotion is uncommon. But Meghan had such TRAUMA from her FNA at another hospital in November of 2011. We had to push.
I had just told this child she could have cancer. I just told her she was likely looking at another surgery. She was unaffected. “I will have whatever surgery I need to. Just make sure I don’t have to be awake when they put those needles in my neck!”
This is the burn the cold spray that was supposed to numb her left on her neck in Nov. 2011.
All day I carry my phone everywhere. I literally put it down for 3 minutes and missed the call about the anesthesia. So the voicemail said, “We need Meghan at the hospital at 9AM tomorrow (Friday) to clear her for anesthesia.”
“When? What type? Why? I can get you a cardiologist report from December. I can be to my pediatrician in 30 minutes, and you just took blood on the 27th.”
I had pleaded for the anesthesia on her behalf. Now I would pay the price. Very careful not to take days off after my attendance debacle last year – I guess I will be at Sloan tomorrow, ensuring the anesthesia my kid asked for is in place. She doesn’t ask for much. Working hard on gratitude, I am relieved at least things are moving. Not on my schedule, but progress nonetheless.
So then my oncologists office called. They want me to see the surgeon. The surgeon we first talked about a month ago. The surgeon who had little more information than he had on December 7th after my MRI. The surgeon who insisted he needed the sonogram, but whose system at the hospital cannot upload it. No one thought to send me for another abdominal sono at their hospital – even though I asked. They would like me to see this surgeon at 10:30 Weds. They will have to have patience now. I have a kid to take care of first. If they were in such a rush I could have been healed by now.
So I am waiting still to hear from my car insurance carrier who somewhere in the midst of all this chaos decided I was totally responsible for the accident where I suffered a DIRECT HIT from a car who took no action to avoid me. Waiting to hear exactly who that letter of appeal gets addressed to.
All of these things that keep happening, keep me from seeing my Grandparents as often as I would like to. My heart weighs heavy. Time and stress are hard to manage.
Patience, I am convinced – is more than a virtue. It is down right necessary, and almost debilitating with exhaustion.
Patience for me is hearing, “It is likely your child has cancer,” and then WAITING to take care of it.
I get that in the scheme of things thyroid cancer grows slowly, and 2 weeks won’t make or break things. But this is my little girl we are talking about. May God bless me with the patience to get through the weekend.
What a year! Just months after our diagnosis of Cowden’s Syndrome in the fall of 2011, Meghan and I took on 2012 completely unsure what to expect. As a matter of fact this very week last year, I was anxiously awaiting word on her thyroid biopsy slides that I had had transferred to a new hospital. Ironic that I sit tonight, waiting to hear when the next thyroid biopsy will be. The more things change…
In 2012…
I lost the ability to say, “I can’t.” Instead I gained “Nerves of Steel” attacking this syndrome head on.
I lost my self pity and gained determination watching my daughter start her own awareness campaigns.
I lost my fear of driving on highways and in big cities. Now I navigate NYC like a (cautious) professional, and even venture to hospitals in NJ and Boston.
I lost my fear of ridiculously large medical bills. Instead I get to them when I can, knowing in most cases they are fortunately not mine to pay anyway.
I lost about 3 more sizes, and have finally settled into clothes that fit.
I lost my muscle tone, as wild days kept exercising at bay.
I lost sleep, and more of my brown hair to gray as worrying kept me up many nights.
I lost my breasts in a bilateral mastectomy, but replaced them with perky new silicone ones, and with that…
I lost my fear of breast cancer and those ridiculous breast MRIs!
I lost my feeling of loneliness after my surgery when I got to spend a week chatting it up with my Mom.
I lost some of my close friends, who understandably tire of hearing me repeat the same stories without resolution, but I gained an incredible online support “family,” through Facebook, through PTEN world, and through my blog.
I lost that sense that we are alone at this battle against Cowden’s Syndrome, and I gained a deeper appreciation for the friends that call, message, and connect me to organizations like NORD, and the Global Genes Project.
I lost my uterus, and my ovaries, but I was done with them anyway, and I gained permanent birth control and instant hot flashes!
I lost one of my Grandpas who I know I was so lucky to have for so long, but whose loss is felt deeply.
I lost my old cell phone, and finally traded it in for a “smart” phone.
I lost my old church, for reasons that still break my heart, but my family has been welcomed home at a new church where we are still marveling in God’s mercy and grace.
I lost my negative attitude about Staten Islanders when I watched my friends and neighbors rally to help the victims of “Superstorm Sandy.”
I lost my car in a ridiculous accident, but this week replaced it with a 2013 Hyundai Sonata.
I lost the way I sometimes took my grandparents for granted after Grandma Edith fell this fall. I always loved them with all my heart, but I will remember how lucky I am each and every day.
Family shot in front of the New Year’s Eve Ball.
In 2012 I gained tools I will use every day as I move forward.
I gained…
Determination – that we will beat this!
Focus- on what matters most.
Perspective- that everyone suffers.
Forgiveness- because negativity hurts me more than them.
Gratitude- for the kindness of family, friends, and strangers.
Compassion- as I watched my little girl continuously open her heart to others.
2012 had plenty of hard times, but like my car, it was far from a “total loss.”
I have said so many times, and through the last year especially, that it’s all about perspective. That is how I get by, and that is how I teach my daughter. The key is having enough perspective in life to understand that in EVERY house, in EVERY street, in EVERY city, in EVERY country, people have “stuff.”
Now its easy to look sometimes and think that “this isn’t fair” or “they have it easy,” but in reality – we just don’t know. We aren’t them. So we live our lives, trying to avoid passing any judgements – and doing our best to get by.
We are acutely aware, especially in these days after the tragedy at Sandy Hook Elementary School, and “SuperStorm Sandy” that tore through our hometown, of how lucky we are,
And yet, even with all that perspective. Sometimes it’s just hard. Sometimes its hard to get up and get going, and press on. Sometimes its hard to deal with the punches life keeps throwing. Sometimes I need to stop and take a breath to avoid the chest pain of my own anxiety. Sometimes that’s just how it is.
So, I remain torn. Torn between the conscious knowledge that so many others are suffering in ways far worse than I could imagine, and this ever-present, sometimes bone crushing fatigue that plagues me as we just try to get by.
If you are still reading then. you will indulge me a few minutes of frustration along the “Cowden’s Syndrome” journey? That is, after all, what brought me here to being with.
Sometimes when life gets as overwhelming as it has been I start to practice avoidance. I duck phone calls and messages. Not because I don’t want people. It’s actually quite the opposite. Its because I fear people will tire of hearing the same old thing. And, really, no one knows what to say. So even if I am comfortable enough to lay it out there, I feel bad for the poor soul now left without a clue as to how to reply.
Three months ago Meghan‘s pediatrician asked me to find her a neurologist to contend with her headaches I am thinking she more likely needs an ENT for her sinuses, but I haven’t found either one. The week of “Sandy” her eye doctor appointment was cancelled. Haven’t rescheduled that one either. Tonight she lays in bed resting her fatigued hypermobile joints. I wonder if she gets that most kids don’t have to spend the night in pain just because they danced in school a bit today.
Last December – this exact week, I was very busy getting the slides from Meghan’s November thyroid biopsy transferred to a prominent cancer hospital for a second look. It took phone call after phone call, but finally they were received by the endocrinologist/oncologist. Just in time for a holiday break. We waited anxiously for confirmation that the biopsy was read correctly and was indeed benign. We were called in for a meeting with the doctor a few days after New Years. The news was better than we had expected. “Precancerous cells.” Come back in 6 months. And so we did. The scan in June got us the same – return in six months. On December 27th we will head back to see if those cells are still “precancerous.” I am fairly sure I am the only one who remembers the timing of last year’s anxiety. That is why I find this year’s timing ironic as well.
So, the car is totaled and gone a few weeks now. The back is improving – often, but not always. The sonogram revealed disconcerting growth with the spleen hamartomas. I trudged through another MRI. I was told to call a surgeon. They requested the CD from the local sonogram. I sent it Fed Ex. It arrived last Thursday.. I called Thursday last week to confirm its arrival. Then I called Tuesday to find out what was the progress. I was told the oncologist and the surgeon had to view it then talk. I think I annoyed the receptionist when I asked if it would be after Christmas. She said no. It would be sooner. So, I have carried my phone like a schoolgirl with a crush. Nope. Tomorrow is Friday. I can almost wager they are away, or on vacation. I just want to know if I am planning for surgery on my spleen. That’s all. Am I planning for surgery? I can wait on the specifics.
But,maybe I can’t wait that long. I guess that all depends on Meghan’s thyroid. If that stays in, then I can pull this off. One more surgery – no big deal. But if she needs surgery too… then things get trickier.
I am NOT looking for a formal plan here. I know how God feels about that. Just some guidance… maybe?
I was back at the hospital that did my hysterectomy tonight for my six month follow-up. Everything looks good. Apparently the hot flashes are right on schedule, and hormonal migranes get me a script for medication. I will see them again in the summer so we can talk about adding bone density test to my list of life long follow-up stuff. It’s all good. I got this.
I think.
Yesterday was “cause day” at our school. I wore Meghan’s necklace and her shirt. I was able to raise a bit of awareness. We have 300 yards of denim ribbon. We are going to do something special for rare disease day in February.
We are special. We are 1 in 200.000. There are 2 of us. And I am tired.
But, I haven’t lost my perspective. We are so blessed.
I should be sleeping. It is 1:30 AM. This is my second post for the night, because I can’t stop and sort out the overflow in my head any other way.
Maybe you have been following the saga of my poor spleen… or not. Either way, my spleen has issues. Or, rather, my doctors have issues with my spleen.
The first time the hamartomas were detected on my spleen was probably when I had an abdominal ultrasound as a screening after my diagnosis. When I saw my oncologist in August, she wanted an MRI done of the spleen so she could have a basis for future comparison. When she called me with the results in August she was ready to send me for a surgical consult, based on the significant size of the 4 hamartomas (courtesy of Cowden’s Syndrome – aka PTEN Hamartoma Tumor Syndrome) on my spleen. Since the spleen itself is only about 11 cm long, the hamartomas across the top equaled or exceeded the length of the spleen. At the time, I was coming off of a double mastectomy in March, and a hysterectomy in May. She was forcing my hand to schedule a colonoscopy (which I did,) but I pleaded with her for 6 more months with my spleen. Reluctantly, she agreed.
So, when I had the car accident and I was sent for an abdominal ultrasound, that started the whole process over again. The oncologist looked at the report and ordered an MRI. I went for the MRI and tried to set up the surgical consult. The surgeon, who is a surgical oncologist, thinks the spleen needs to come out, but he wants me to see a different surgeon to see if it could possibly done through laproscopy first. But, he wants to talk to my oncologist before he will set up an appointment to even evaluate my case, and my oncologist spent last week in California at a conference.
So, instead of February… it is now December, and I am waiting. Waiting to have the fate of my spleen determined.
Well meaning people say to me, “Don’t worry – you can live without your spleen.”
Sometimes well meaning people should smile and nod more, and speak less.
Yes, I KNOW I can LIVE without my spleen. You can also LIVE without your boobs, your uterus, your cervix and your ovaries. You can LIVE without your gall bladder, and your appendix, and your thyroid, and one kidney, and part of your liver or lung too. But, just because you CAN do something, doesn’t mean you should.
I am thinking of asking for a fake fish for Christmas. One that will remind me I have been gutted like a fish this year. One that will also remind me that, no matter how many body parts they take, you have to KEEP SWIMMING!
Monday or Tuesday I will talk to a doctor about my spleen. I would love to keep it. I just think we have gotten along nicely for the last 39 years. And, its mine. But, I will listen to the doctors (after I ask them EVERY hard question I have,) and I will do what is best, and safest.
Heck, I didn’t go through all of this past year to be beaten by my spleen….
This is the letter I send in my Christmas cards… shared for my “on line” friends.
“So do not worry about tomorrow, for tomorrow will bring worries of its own.” Matthew 6:34
December 2012,
Dear Friends,
It is hard to imagine another year has passed, and here we are again – eagerly anticipating Christmas and the birth of the baby Jesus. This year the Christmas season is peppered with even more emotion, as we watch our friends and neighbors rebuild from the effects of “Super storm Sandy.” Those of us whose homes were unaffected live in a state of uneasy gratitude, as we do what we can to “Pay it Forward,” to those who have lost so much.
Life in the Ortega house continues to be one of adventure. We are blessed. Meghan excels in school, and loves to swim and dance. Medication allows her to move her body without pain. We are grateful each day for each other, as it is that bond that allows us to weather the storms of life. And there have been some this year! Some time in early spring, Felix joked that I should start on my Christmas letter. He wasn’t kidding.
We began the year, Meghan and I, addressing all the preliminary appointments connected to our new diagnosis of “Cowden’s Syndrome.”
We needed to be set up with oncologists, endocrinologists, the geneticist, and for me, a beast surgeon, an endocrine surgeon, and a GYN oncologist. We can’t use the same doctors, because she needs pediatrics, and in most cases we can not even use the same facilities because our insurance carriers differ. We have been scanned repeatedly – each MRI separate. Sonograms of every body part you can imagine. All of this to learn that this testing will take place in 6 month cycles pretty much indefinitely.
There is so much overlap as to how everything came together this year that it is even hard to summarize. I feel like sparsely a week went by without an appointment – many of them in NYC. I laugh now at the days I swore I would NEVER drive in the city. I don’t use the word “NEVER” much anymore.
In February, Meghan endured her 4th surgery for the arteriovenous malformation (AVM) in her knee. The recovery this time included crutches, and the realization that there was blood leaking behind her kneecap. We were sent to Boston Children’s Hospital where she had a consultation in April with “the doctor who will do the next surgery.” Again, not if, but when. So we wait. She will be scanned again in February to determine the status of the very stubborn AVM. Cowden’s Syndrome complicates any vascular anomalies.
In March I underwent a “prophylactic” bilateral mastectomy. After consultation with several doctors, it was determined that the 85% risk of breast cancer that Cowden’s carries with it, coupled with my personal and family history, made the surgery a necessary next step. Both the surgeon and the plastic surgeon were on site as I opted for immediate reconstruction. The surgery turned out not to be so prophylactic, as my pathology showed I already had cancer in the left breast. The best thing that came out of the surgery was having my mom hanging out in my house for a week – just chatting and giving me a much needed hand. Thankful to God, and for my surgeon, and my husband, for pushing me to get it done – we caught it in plenty of time, and no treatment was needed.
Continuing with all the initial appointments and scans, a suspicious polyp was found in my uterus a few weeks later. A trip to the GYN oncologist led to a conversation that left me with little other option than a complete hysterectomy. So, about 10 weeks after my breast surgery, I headed back to NYU for a complete hysterectomy.
A month later we took Meghan for her thyroid scan to Sloan Kettering. We were told that one of her many thyroid nodules was close to a centimeter and starting to dominate the area. So, our initial “return in a year,” changed to – “we will rescan her in 6 months.” December 27th we go.
Subsequent scans of my interior, (I keep telling them to leave well enough alone – but they believe in taking the used car to the mechanic,) have revealed 4 hamartomas on my spleen, and a small cyst on my kidney. Those are benign, and common in Cowden’s Syndrome, but need to be watched because the potential for other complications exists. I will also be rescanned the last week in December – but after losing so many organs this year, I warned them that I am rather attached to my spleen!
In the midst of our medical “stuff,” life continued around us. In June our hearts were broken by the loss of Ken’s dad, or GGPa, as he was known to Meghan. A man of such compassion, and love – a gentleman, and a GENTLE man – will be truly missed. Our hearts will never be quite the same.
Meghan and GGpa
Just to keep things interesting, as “Super storm Sandy” raged around us in October, Grandma Edith, Mom’s mom took a fall down the basement steps. No one is quite sure exactly what happened, but it is evident that the angels held her that day. She suffered a serious head wound, and severe bruising, but broke nothing! She spent days in ICU, and returned home the end of that week. With the help of a high quality staff of physical and occupational therapists, as well as the never-ending love and care she receives from Pop and my Mom, she is getting physically stronger every day. I admire my grandparents. As they approach their 67th wedding anniversary, they stand together as examples of marriage as God intended it. They are role models to us all.
Love my Grandparents!
Their marriage reminds me that God gave me a great gift when he sent me Felix. I can say that we share such love through God’s grace – that I can not imagine my life without him. He is my soul mate – and my sanity!
I guess I leave you with – to be continued. No words of wisdom this year. We are trying our best to take it one day at a time. The tree is up. We have our hearts and our heads focused on what matters. We certainly have had plenty of lessons!
We would love to hear all the things that are new in your home!
Warm Christmas Blessings,
Lori, Felix, Meghan, Allie & Lucky Ortega
“Sometimes your blessings come through raindrops, sometimes your healing comes through tears….Sometimes trials of this life; the rain the snow the darkest nights, are your mercies in disguise.” –Laura Story
The cards were in the mail Sunday night. I was getting it together.
Monday I was leaving work, ready to make one stop at a friend’d house before getting Meghan.
I stopped at the stop sign. I looked to my left down the one way street I have traveled so many times before.
I was clear… and I drove.
3/4 of the way through the intersection…
I really did love my Hyundai
I didn’t see the SUV until it was in my rear driver side door. I spun like an unwanted ride on the teacups and ended up on the grass and curb facing the wrong way.
His car ended up a block away. There had been no braking. No horn. The impact shut his car down.
As I managed my way out of the passenger seat I was clearly stunned – full of so many thoughts.
The trip in the ambulance with an “angel” from Meghan’s school who happened to live in the neighborhood was surreal.
I have laughed and cried a lot over the last 24 hours. I am grateful that I am walking and moving. I am tolerating the muscle spasms and bruising.
As I spoke to the claims adjuster today and they explained that the claim would be backlogged due to the hurricane… I understood. What I didn’t understand is how the guy speeding through the school zone is right, and I am wrong… but I may never understand that.
The thought that gave me peace tonight… in a year that has been so tumultuous, was that maybe – since it was dismissal time so close to my school… maybe I had to take the hit so someone’s kid didn’t have to. Maybe… just maybe.
So I think of my little love.. and I am so happy she is safe. And maybe that thought is where I will draw my peace.
“Sometimes your blessings come through raindrops…”
Now, if you’ll excuse me – I need to head out for a sonogram of my spleen… seems they need to make sure those hamartomas weren’t impacted by the crash….
As I sat in the dentist’s chair a few weeks ago getting another bridge organized, I enjoyed pleasant conversation with my dentist. I know, that may sound strange, but really she is quite pleasant, and very talented at what she does. She is also the Mom to twin friends of Meghan‘s from her class, so we have known each other over 4 years now. She is a mom, wife, dentist, photographer, fellow blogger, volunteer, and a generally nice person to be around. I am grateful to call her a friend.
As I was getting ready to go she asked me when she could schedule me for scaling and root planing. After I had her explain the depth of the cleaning that was involved, and even after she explained WHY it was a good idea, my instinctive answer was , “NEVER!”
English: 29px Sharp top of a periodontal scaler Deutsch: 27px Scharfe Arbeitsspitze eines Scalers (Photo credit: Wikipedia)
Over the last 6 months alone I have had breast cancer, a double mastectomy, with reconstruction, and a hysterectomy. I have been scanned, had countless MRIs, and just recently completed a colonoscopy/endoscopy. To say I am DONE being poked and prodded would be the understatement of the year.
So, as I listened to her careful list of reasons why this scaling and root planing procedure is a good idea, I just wasn’t sold on the concept of ANY more pain.
I told her, “When they tell me I can keep my spleen, then I will make the appointment.” She laughed out loud. But this, this is what life with Cowden’s Syndrome has become. I am willing to celebrate being allowed to keep one of my organs, with a dental procedure that is probably quite necessary anway.
But, I feel like life in this body is about triage. I have to take care of things one step at a time.
Traube’s space (Photo credit: Wikipedia)
So, the oncologist called today about my spleen. They were comparing the ultrasound pictures from April on 2012, and November of 2011 with an MRI in August 2012. She sent it to a lot of people to look at. The answer..maybe.
Really, are you surprised?
You see the ultrasounds showed identical, medium size “hamartoma.” (PTEN Hamartoma Tumor Syndrome is the umbrella term for Cowden’s and several other related Syndromes) But, the MRI showed 2 distinct, and one fairly large “hamartoma.” The good news about these is they are benign. The problem is – if they follow the body’s tendency to grow and grow things, they won’t be able to stay there too long.
I know, you can live without a spleen. You can live without a uterus, ovaries, a cervix, breasts, and a whole host of other things. But, just because you CAN do something, doesn’t mean you SHOULD.
So, I will go back in December and repeat the MRI. While they are there they can make sure the tiny cyst on my kidney stayed tiny too.
As soon as they are done. Once they tell me it is all stable, and I can keep my spleen. I promise, I will be a big girl and get my scaling and root planing done.
At least I have a kind, gentle and pleasant dentist – and she is looking to keep things IN, not take them out!
My dog Lucky is a bit neurotic. She just is. So when I came home today to find she had chewed through half her metal crate – literally lifted the bar off at one point, I wasn’t all that surprised.
Lucky (the black one) and Allie, playing together.
It got me to thinking though. No one, or thing – really likes to be caged. The “girls” get plenty of time to roam free when we are home, and when we are not, but we have to make the best decision for them each time.
What struck me thought tonight, when I saw a piece of the metal crate literally bent off, is exactly how much she doesn’t like the crate, and how much she wants out.
We feel like that sometimes here – about PTEN, and Cowden’s Syndrome. We feel like we are stuck, in a locked crate. We want to run free, but the daunting tasks that lie ahead make it seem like an “Escape from Alcatraz” might be necessary.
Meghan’s fevers this weekend scared me. I know her immune system deficiency may stand alone from Cowden’s, but that doesn’t make it any easier to process. And, I swear if they were not related before, they feed off each other now.
The fever was gone Sunday night. It made another showing of about 102 and then that was it. She stayed home Monday with our friend Patty, and was treated like the princess she is. By the time I came home Monday she looked so much more like herself.
We went to the pediatrician Monday night. He wants me to contact her oncologist and get a referral to a neurologist to address the intermittent headaches she has been having. Her oncologist who Emails quickly, got a set of all the recent labs and the recent brain MRI. She is going to get back to me. I have no idea where we will fit one more doctor in – but we will figure it out.
So this morning, we woke up feeling ready to go. She responds so well to antibiotics, that we were seriously on the mend.
After she brushed her teeth she complained her gums were bothering her. I didn’t see much.
Tonight she said it was much worse. There is a growth on her tongue. Right on the edge. It grew today. During the day. No idea why. No clue what to do about it. I don’t know but it reeks of Cowden’s and its NASTY overgrowth – of everything.
I guess I will deal with it tomorrow, right after I call on the throat culture and find out if we need to see the ENT.
Someone told me today I looked tired. Not me.
If you need me, I will be biting my way through the crate, getting rid of one bar at a time. Maybe Lucky las the right idea.
I learned a few things as I set up my classroom this week. Many of them I will not say here, because Mom always says, “If you don’t have anything nice to say, don’t say anything at all!” Well at least that’s what she used to say when we were young… but I digress.
I have been without my own classroom for a few years now. I have been a traveling math cluster, and then last year shared a room with a colleague. This year I was given my own 3rd floor room. It is harder to have a room, but change is good – so I was ready and excited to try it out. And grateful for the opportunity.
See last spring my colleague and I were told we were to share the 3rd floor room. So, in the heat of June we brought everything we could (using LOTS of kids to help) up to that room. The rest of my personal belongings (from the first 10 years in the classroom) were stored in a nearby storage closet.
Sometime over the summer I got an Email that the schedule had changed. The third floor room would be mine alone, and the 1st floor room would belong to my colleague. So I set about the business of buying all the things you need for a room.
I brought my things in on August 22nd, but I couldn’t stay to set up. Meghan had an appointment. As a matter of fact I couldn’t come in the next day either because of two of my appointments -so I first got in to get settled yesterday.
Much to my surprise, the storage closet where all my personal things were had a new lock. I didn’t have a key so I took that as my clue to vacate.
Now, prior to the Mastectomy, I was pretty strong. I helped my husband renovate the house. I know how to move heavy things. Prior to the hysterectomy and the mastectomy – just a few short months apart, and just 6 months ago… I felt like this.
Now, after moving boxes for 3 hours yesterday. up and down the stairs, even with the help of a few well intentioned friends, I feel more like this.
I am sore in places I had no idea it was OK to be sore. This was either an eye opener to my age, my body’s fatigue, or the fact that it is time for some serious exercise.
But, after 2 days my classroom went from this:
To a lot closer to this:
Which is a good thing, because I just don’t do clutter well at all.
So when I left a little more relaxed it was time to get a confusing phone call from the doctor.
Meghan’s blood panel appears normal, but I have to compare the thyroid numbers off the last one when I see it. That was OK, and then he said the MRI had an “ODD” finding – shocker!
The “anterior pituitary tissue is seen though it is diminutive in size for age.”
Still actively trying to figure out what that means, especially because we were scanning for a pituitary tumor to try to find the cause of the early puberty. Now, clearly the pituitary is TOO SMALL? Really? I just can’t figure this out.
Grateful there is no tumor, I asked the doctor if it was insignificant. To which he replied, “Everything means something. I have never seen this before but I will be asking a lot of questions.”
So, fourth grade for my big girl tomorrow. One day at a time, this is all we can do…
We tried another church today. This time all three of us went. A little different than what we are used to, or I should say WERE used to – but it holds some promise nonetheless. Before we had even left we had been given a tour of the facility by the pastor, and Meghan was invited to a free music class Thursday afternoon.
God has a plan. And while we did not head all the way to Norway where Wikipedia tells me this picture is from, we were away from “home.” I am working to keep my eyes open and focused because to be quite honest some days God flat out confuses me. So we will see. At least we worshipped together as a family – for the first time in months!
It was gray and overcast a lot of the day. Glad we got in a swim yesterday. It may have been the last one. We would close the pool tomorrow, but we need to call a man about some air bubbles in the liner. Hoping its nothing too serious.
We got to spend the afternoon with my grandparents and my parents. Last minute plans are always a treat when we get to be with family. Pop was 93 last week. Grandma will be 92 in 2 weeks. GGMa is not quite up there, but it is still always a reminder of how fortunate I truly am to see my grandparents interacting with my daughter.
The oncologist’s nurse called me Friday. She wants a copy of an old abdominal sonogram on CD so they can sort out the spleen, and why it seems to suddenly be growing so many things. I told her it was going to take me a bit of time to get it because it was 4:40 on the Friday before a holiday weekend. She told me I could get it Tuesday. I chuckled.
No matter how hard I try… “I plan, God laughs.”
I explained to her that after 9 and a half weeks of summer vacation, I return to work Tuesday. I will not physically be able to have the CD burned until Friday. They will get it in about a week and a half. At which point she nicely reminded me that it could be serious. To which I replied quite simply, “No it can’t, because I don’t have time.”
She was appalled I think. But, what I meant was, I have undergone 2 major surgeries in the last 6 months. I have a colonoscopy scheduled for one of the days off this month, and an orthodontic visit with Meghan on the next one. Unless you can prove to me my spleen is about to explode or damage some other remaining internal organ – HANDS OFF!
I am about done with all these doctors!
So as much as I did my best to plan to keep next week, the first days of school, free and empty of things to do – the yellow pad next to me gets more full by the minute.
I will at some point get that CD. I will get the results of Meghan’s blood test and MRI. I will call Meghan’s school and sort out the busing mess that is developing for the first day of school. I will get the pool guy to show up when someone is home and tell me if I need to fix the pool before it can be closed. I will get Meghan to swim class, the orthodontist, and that new music class, and to Physical Therapy too.
I will get back to work. We will get back to homework, and a schedule that hopefully involves more kids and less doctors.
There will be stress, and tears, and nervous stomachs, and excitement.
And for Mommy – there will also be wine. LOTS of wine!
Although I must admit sometimes it’s nice to reflect with a few “normal” worries mixed in!
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.)
And I am reminded of the image of the dog digging up the street that Meghan found for me a few weeks ago. This is what we do.
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.
Bookends.
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!
That’s where I sometimes have some trouble.
Working hard on gratitude, I am relieved at least things are moving. Not on my schedule, but progress nonetheless.
beatingcowdens 