Yes, there is the occasional moment where I think the new girls feel a bit awkward, or unnatural. There is the occasional moment when I look in the mirror and try to remember what the old girls looked like, and what it was to have nipples instead of scars.
Then I get over it.
And I think about how comfortable and natural it was last night, as I held my exhausted daughter and she rested her head on this size A silicone that sits where my old boob was. She didn’t even hesitate. She didn’t mention it being weird or unnatural. She didn’t notice.
And my husband, who means it when he says over and over – “I am just so glad you are here.” And, I believe him.
I am blessed to have had great surgeons, a superb support system, and the “push” to say goodbye when it was time.
A year ago I still had more body parts. If I had left them all alone I could be dead now. But I am not. And the cancer is gone.
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….
There are people you meet in your life – and even some you don’t actually meet… that make a world of difference for you.
I saw this today and it made me think of some of the people I have met over the last year. Some of them don’t talk to each other any more, but I talk to them all. It’s just who I am.
Today I couldn’t get a phrase, shared by one of those on-line friends, out of my head.
This has been a tough week for me. It happens to the best of us. I know I am usually pretty positive, but this week it has been harder than normal. So when I shared some of my struggles she said to me…
I thought about it for a while. And you know what? It made perfect sense. She has had plenty of struggles of her own. Actually, she has had more than her fair share, but she brings it all to the table in the Cowden’s support group. She shares her ups and downs, her struggles and celebrations, and she just keeps right on swimming.
I think, to some extent that is what we have to do. Look it in the face, whatever it is… take a deep breath and keep on swimming.
Today is my birthday. I turned 39. And I am proud to say it. I have no intention of staying here either. Next year will be 40, and so on and so on.
But with my birthday comes a flood of emotion. This is just over a year since my Cowden’s Syndrome diagnosis. It has been just over a year since mine and Meghan‘s lives were forever changed by the news that we carry a PTEN mutation, and that our bodies are inclined to create benign and malignant tumors – all over.
Keep Swimming…
It has been eight months since the “prophylactic bilateral mastectomy,” which turned out to be a life saving operation when the pathology revealed stage 1 DCIS. I have almost adjusted to “the new girls,” but with each change of season comes the realization that the landscape of my body is forever changed. Old familiar sweaters need to be replaced. Nothing is quite where it used to be.
Keep Swimming…
It has been six months since the complete hysterectomy. The one Cowden’s Syndrome called for – way before its time. So as my body celebrates 39 – my hormones clock in somewhere around 55. And with no hormone replacements in the cards, we are learning to get used to each other. Not uncommon for me to go from a turtleneck to a t-shirt. Good thing there aren’t too many clothes to pick from.
Keep Swimming…
My birthday has been charged with emotion for years. Ever since we lost my sweet cousin Meghan to Leukemia at the age of 6, it has been a harder than normal day. Despite my best efforts, at some point emotion overtakes me. I have always been grateful for our deep connection – so deep that I named my daughter for her. But, somehow 21 years fade and the feelings are that of yesterday. Oh, how I miss her.
“Angel Meghan” – 1987
Keep Swimming….
My Meghan faces scary appointments in the upcoming months, as we determine if her thyroid nodules are growing or stable. Her health is always a tenuous issue, but her smile and positive attitude make it easier to press on. I wait for word on my spleen and my kidney… silent benign tumors that will either prompt more organ removal… or not.
Keep Swimming…
GiGi fell during the storm. Two weeks ago today we were very scared. Today she walked with help around the dining room table. Her feet still work, she was excited to discover. Surely this is a realization worth celebrating. Happy birthday to me.
Keep Swimming…
We went to Midland beach today with a few small things. A donation a friend from New Jersey had sent, as well as a few things Meghan and I picked up this morning. Sometimes paying it forward is the best birthday gift you can give yourself. If everyone gives just a little – time, money, supplies – whatever you can… it makes a world of difference. It matters.
These people. The people of Staten Island, and Breezy, and the Rockaways, and all the other coastal communities devastated by Hurricane Sandy, they certainly are showing their ability to…
…Keep Swimming…
Such an intense day. At times I laughed. At times I cried. At times I was proud. At times I was sad. Life is changing every single day. The ones you love, the places you are comfortable, and the people you are comfortable with – all transient.
I looked over my blog today. It has truly been a journey. And if you got this far you are reading my…
Who knew I had this much to say?Amazing you people find this interesting! 🙂 But I am grateful to have you.
Tonight I am reflective. I am enjoying my family and my wine. I am thankful. And I am tired.
It has been a long year. But a productive one. A year unlike any I had ever imagined. The journey here is far from over. I am thankful for my close friends, and my cyber friends. I am thankful for those of you who read, who I will never know. I am thankful for reality checks. I am thankful for celebrations, and laughter and tears – for they all make me who I am.
This is definitely a marathon, not a sprint. Cowden’s Syndrome, like life, requires patience, flexibility, and endurance, as well as a well-rounded view of reality.
Sometimes I think maybe if we were just battling one thing at a time… it might be a little easier. Maybe I am wrong, just wishful thinking. I guess I won’t know because apparently we are tasked with completing multiple battles simultaneously.
Last night we spent hours full of uninterrupted discussion with the pastors of the church where we will be spending our time. It is hard to know what to call it. I am not in any way prepared to give up my membership to my home church, and they know and respect that. Yet, it was so nice, so warm and comfortable to sit with my husband, and these pastors, and have discussions, both personal and theological. No one was judged. Everyone was comfortable. Mixed emotions 2 and a half hours later, past everyone’s bed time. Our children finished playing, and we left – tired but peaceful. It’s nice to know where we will be every week for a while. Its kind of like finding that first permanent job after years of subbing. It is also nice to have my husband by my side. God works in very strange ways.
We had planned to be out of the house at 9 to go apple and pumpkin picking this morning. We were a bit delayed by the late night, but we made it. It was so nice to see Meghan happy. She doesn’t ask for much, but had specifically asked for this.
We made her walk, and she did well for a while. Only towards the end did the pain in the legs start in. Cowden’s Syndrome always nipping at your heels as you try to kick it to the curb.
When in doubt – Daddy is the safest ladder!Me and my girl!
My PATIENT husband! 🙂
So after such a nice morning – with only minimal pain, a bit of fatigue and a lot of happy, we headed home.
I had missed my standard Friday night grocery shopping at our meeting last night, so we decided to stop by Wegman’s on the way home.
LOVE this place!
I think we made it about three aisles before a look of horror crossed Meghan’s face. Then there were the tears.
She opened her mouth and again, for the second time in the two weeks since she has had her braces, a bracket popped off. Now I know this isn’t totally uncommon, but twice already seems excessive for a kid who doesn’t eat ANYTHING she shouldn’t, and who is so attentive to these braces your would never imagine she was 9.
So, as we begin to reassure her that we will take her to get it fixed, SHE reminds US that it is a holiday weekend, and with sheer frustration on her face, she realized – half to herself – and half out loud – that it would be Tuesday before she could have it fixed.
These aren’t Meghan’s braces, but they give you an idea of how hers are set. While they wait for the rest of her teeth, the wire doesn’t terminate at a band on the molar, like I remember, it ends right on a bracket. When that bracket pops off – the wire flies free.
I really was stunned. There in the middle of the grocery store, with a cart half full, our peaceful couple of hours was starting to crumble – again. Daddy took Meghan to some neighboring stores. I quickly finished the shopping, and we headed home.
The car ride was quiet. I was twisted. This kid has had enough. More than enough. A break for one WHOLE day would be nice. As I sat, I shed a few tears of frustration. I left a message on the answering machine at the orthodontist, trying to decide if this was a “true” emergency. My husband decided it was and called the cell phone number soon after we got home.
He called us within an hour. He is a good man. But, he was away. “Clip it,” he told my husband. “Take the wire and the bracket off. I will fix it next week.” And so the electrician turned orthodontist, and off came the bracket.
Peace.
And yet as I looked in her mouth, the mouth I help her brush and floss, and I see the swollen gums, enveloping her braces, my stomach turns at the conversation next week. We will both be told her oral hygiene is poor. I am sure of it.
Cowden’s means overgrowth. The gums are supersensitive. Reacting to the braces. Trying to swallow them up. We floss, we brush, we poke and prod. No success. Certainly we are trying out best.
Nothing is simple. Every battle is crowded by another. It’s not just the Cowden’s Syndrome. And it’s not just the regular growing up stuff, like changing bodies, and braces, and homework, and after school activities. It’s the overlap. That’s where things somehow always seem to get tricky. Right there in the overlap.
Daddy made a tasty dinner. Chicken wrap with fresh guacamole. Things were looking up. Then, they started to decorate the BIG pumpkin.
Sleeping peacefully. Potentially a dreadful weekend, salvaged by a clipped wire. Emotions all across the spectrum. Another day in the life. Another day of sorting through the overlap.
And, believe it or not – since I share it with the two I love the most – at the end of the day I wouldn’t have it any other way!-
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!
My Mom says this… a lot. And she is usually right. I am a planner by nature. Mom, although sometimes reluctant to admit it, is a planner too. The difference is that the wisdom of her years have helped her tone down the level of planning so it is a bit less obvious, and she has also – wisely- learned to keep many of the plans she does make – to herself.
I like to organize everything, and quite simply put – Cowden’s Syndrome is chaos. At least right now.
I mean eventually maybe it will fall into a neat little schedule of screenings, and routine visits, but right now – not so much. If you saw the legal size yellow pad on my desk you would chuckle. I have appointments planned until February of 2013. And, at first glance to list doesn’t look too bad. I was proud. I got to these appointments early. They are all routine. They will all happen after school or on vacation days. My terms. But then we get to the unscheduled ones… and the follow ups… and the new visits. That’s when things start getting hairy.
I called the oncologist‘s office today to get the results of my MRI. The oncologist is away until Tuesday, but a very kind nurse called me back in about an hour. She said, “Everything is benign.” I wasn’t sure to be relived, or panicked. What “everything?” So she started with telling me my liver is just fine. (Well thank goodness, because I hadn’t even THOUGHT to worry about my liver.) She then proceeded to tell me there was a “small cyst” on my kidney, but that was probably no big deal. (And probably not a worry unless you live in a subgroup of people that have a 33% lifetime incidence of renal cell carcinoma.) She continued by telling me my spleen was “a bit more involved.” Hmmm… never have those words started a positive conversation.
The last two times I have had abdominal sonograms, both have very matter of factly stated that there is one 3.5 cm harmatoma on my spleen. Ok, I had decided all by myself… if it stays 3.5 cm and behaves, we will just leave it there.
Well, apparently there is a “vascular lesion” that is a “significant” size, and “several” small harmatomas on the spleen.
So I said, “what does this all mean?” That is when she said we would have to wait until the oncologist returned to determine the necessary next steps.
“Can I have a copy of the report?”
“I would rather not send it to you until you speak to the doctor. I just wanted to reassure you there were no malignancies. She may want you to come in.”
Which is where I did laugh out loud. Come in – to hear a summary of what I was just told? No thanks. Just tell me what I need to do next and I will get it done.
I looked at my nice yellow pad, where September previously had no appointments, and I see the colonoscopy written in for the 18th.
I have to say I was pretty sure 2 major surgeries for me, meant I was done for the year. There goes that planning again. Maybe I will keep my spleen and its harmatomas forever. Maybe they will make me have it out. Truth is I have no idea. And I can’t plan for it at all.
School starts in a week or so. My life apparently doesn’t always jive with the school calendar. I will have to roll with it.
More importantly, Pop’s birthday is tomorrow. He is 93, and a true inspiration. My family will gather at my house to celebrate him. I couldn’t be more excited.
I really think I am OK with this concept, but we all need a reminder sometimes!
I will get my results Tuesday, and life will go on. It will all work itself out, as it has for… well forever. I will try to keep the planning in check. I really do try.
The only thing I am planning tonight is how many chairs I need for Pop’s birthday celebration!
So as I was positioned to be rolled into the MRI tube today, I realized my heart wasn’t even racing. Not that I ENJOY an MRI, it’s just they have become so familiar that they no longer provoke the anxiety they used to. I have held onto Meghan‘s shoulder through countless knee MRIs, and this past year have had quite a few of my own.
Today it was an abdominal MRI. Now if you have been following the story at all you know my abdomen is missing a few things. You may or may not know that there is also the issue of a harmatoma (basically a fatty tumor) on my spleen from this PTEN harmatoma tumor syndrome. Yep, that’s the other big fancy name for Cowden’s Syndrome – or more technically it is the umbrella term that covers Cowden’s and several other syndromes.
So, why the MRI? Well among the other neat cancers that seem to come with this genetic mutation, is renal cell carcinoma. A recent study, the same one that put the lifetime breast cancer risk at 85%, placed the risk of renal cell carcinoma in Cowden’s patients at 33% Yep, quiet old kidney cancer – hiding there until it causes you a problem. So, they like to screen for it – twice a year with an abdominal MRI.
Part of me wishes they could just do the kidney. You see I have this theory about taking the used car to the mechanic… You just sometimes find out more than you wanted to know.
I really am not in the mood to lose any more organs. I think I have reached my quota for the year. And I have to tell you, this is one hell of a way to lose a few pounds.
So, somtime tomorrow or Monday the oncologist will call me. She will tell me that the kidneys look great. She will tell me that the harmatoma on the spleen hasn’t grown, and it can stay right where it is. She will also tell me that the stones they saw on ultrasound in my gallbladder a few months ago are no problem at all. She will tell me all that because that is what I need to hear. And hopefully it will all be true.
I need it to be true. Because I will be busy. An appointment right before the MRI with a new GI set me up for the “necessary” screening endoscopy/colonoscopy on September 18th. The risk of colon cancer is a meager 9%, up only a few % points from the general population, but no point leaving any stone unturned I guess!
Some days I wait for the break. The time when we will be without doctors. Then I realize this is all so new. They are all so scared and confused they are doing all they can when they scan this, study that… Hey, it worked for me when they saved my life with the breast cancer. And, it will work to keep my girl safe as we scan her thyroid religiously.
How can you tell if it’s really progress?When we were in Walt Disney World, one of the rides we went on was “The Carousel of Progress.” Now I must admit this isn’t one of my all time favorites, but it does serve to cool you on a hot August day, and provide some food for thought.
For those of you who have never been, it starts out in the early 1900s and has several scenes detailing progress through the years. Of course, with all progress, there are a few snags along the way.
The state of the art kitchen in the mid 1900s, looks nothing like the state of the art kitchen in the 21st century.
And I think the lesson to be learned by those of us cooling off in the comfortable Air conditioning, is that with every new change, we lose a bit of the old. It is often beneficial, and frequently necessary to improve, but we need to keep an eye to where we have come from so we don’t lose ourselves.
So why was this on my mind – aside from sorting out the Disney Photos? Today was a doctor day – again.
Today we took a 2.5 hour (should have been 75 minutes) road trip to Long Island to see Dr. E. People ask me all the time who he is, and why we see him. Well, the truth is, he is kind of our “think outside the box” doctor.
We first met him in 2005. Meghan was severely delayed in many areas. Her behavior was at times scary, as she was having fits of rage that were tough to manage. She was bloated, and her belly was in terrible shape. She wasn’t speaking much, and her speech and occupational therapists were starting to whisper “autism” to me.
Not feeling at all like that was where she was, we headed to see Dr. E, a DAN! (Defeat Autism Now!) practitioner. He had been a pediatrician for over 20 years and had recently made the change to treating children with biomedical interventions.
It was a scary commitment to see such a doctor. There was no insurance at all, and the initial out of pocket fees were frightening. But when we sat and spoke with him, and he told us about the ways he was going to help Meghan – he meant it.
It is 7 years later. My daughter is a far cry from that sensory sensitive, sickly, silent, little girl we brought him in 2005. We have gone through countless lab tests, various diets, vitamin and mineral supplements, prescription and non prescription medication. He has seen us through her gall bladder attacks, and has answered my texts and Emails at the most obscene hours.
Progress. At a cost.
Not just a financial cost, but an emotional one too. And now we hit a crossroads again. Progress is at a standstill in many ways. (Not in the bright, articulate, funny girl, but in other ways people don’t see.) The strep is returning to life on a regular basis. Her development is not agreeing with her hormone tests. Her belly bothers her, and she needs medicine to help her sleep.
I spoke with him at length today. He wants me to see a very intelligent nutritionist in NJ for a very specific test. It will uncover some of the “mysteries” we are missing, he says. We are past the point where we can look at her and treat her. She appears well, but there are too many things that don’t make sense.
What about the Cowden’s I ask? What about the PTEN? Isn’t that the cause?
To which he gives me the honest, “I don’t know. There isn’t enough research.”
But, he insists what he does know, is that we will gain a wealth of information from this test.
It is costly, and there is no guarantee the insurance will cover it. But, she is worth it, and we will likely set it up. The question is when?
School starts in a week and a half. I have 2 appointments tomorrow, she has 2 Monday, and another Weds. There comes a point where we have to stop running like this.
The Carousel in Ocean City, NJ
When I was a little girl we vacationed in Ocean City New Jersey. I used to like the carousel, but I wasn’t as daring as my sister – who would lean over and reach out for the rings. I liked to hold on – tightly.
Some things haven’t changed.
I think about this carousel as well, moving in circles, sometimes seeming to get nowhere.
I find all these appointments all consuming, almost overwhelming.
Then I stop and think – it’s not about getting there, it’s about enjoying the ride.
beatingcowdens 