“No, they’re not real (the real ones tried to kill me)”
the surgeon who two weeks ago did my hysterectomy did a wildly uncomfortable internal that brought back memories of the one when I was 41 weeks pregnant.
She then declared that I was, “healing well.”
I laughed and reminded her I am a “professional at recovering.” At least she has a sense of humor.
That is what we Cowden’s patients do, isn’t it? Surgery to surgery, procedure to procedure, happily enjoying the time in between. Knowing it will end. We recover. And we darn well better recover stronger and wiser and with our humor in tact – the alternatives are frightening.
She did tell me, because nothing should ever be quite “normal,” that she has never actually seen internal stitches come out so fast, and in pieces so large.
I told her in the hospital my body didn’t care for dissolvable stitches. She laughed at me then too. Come on, almost 20 surgeries later – I know my body.
So, it’s essential that I don’t lift anything over 10 pounds for at least another 3 weeks. I need to avoid bending any more than necessary. No swimming. No pushing. No pulling.
When I left the hospital they told me I could drive in 2 weeks. I lasted 6 days. I am an overachiever. I also asked them when the chauffeur was coming to drop off, pick up, and all that other stuff.
Now, since I know the stitches are loose too early I will try to be good. But really, when are they sending the housekeeper, preferably one who cooks allergy safe meals? My husband is working all day Saturday and Sunday. There is a bit of an echo, or occasionally an attitude when I ask for help.
So, my girl and I will make it through. Ticking the time away until her appointment June 14th. This time its my turn and she is awesome. Next time it will be her turn to be “healing well.”
Dear God, please remind me to ALWAYS be there for her, and support her, her whole life, no matter how tired or busy I may be. AMEN
So, last night after we left the endocrinologist‘s office, I couldn’t shake this book. “Cloudy With a Chance of Meatballs.” If you are not familiar with the story, basically in the town of Chewandswallow they get their meals from the sky. They never quite know what’s coming, but three times a day it rains things like juice… or meatballs. Eventually this starts to become a problem for them, as the portions get larger and more unpredictable. It is a cute story, worth a read if you have a little one. But nothing I want to model my LIFE after!
This was the long awaited appointment for my 8 year old. The one who has been showing all the signs of precocious puberty. She has grown 5 inches in the last several months, lost almost all her baby teeth, grown 2 shoe sizes and now at 8 yrs, 9 months, stands 4 foot 9. This is the appointment where we were going to get the results from the testing, and she was supposed to tell me that the blood in fact confirmed the early start of puberty. Then we would go home, and start having chats, and we would make it through.
Except, as I have said before, things don’t often go according to plan. So, regarding the extensive lab work up, she said, “Your daughter is NOT in puberty. All the hormones that tell the brain to trigger development are sleeping.”
Excuse me?
How then do you explain the breasts that are developing, the palpable painful lump, and this giant growth spurt that you called “typical of puberty?” AND What about the breast sonogram?
Well that is normal. It says “Tanner Stage II development.”
But doesn’t that mean puberty?, I asked.
Well, yes.
But you said… (As I reach for a copy of the report) Hey, it also says “area of palpable abnormality of clinical concern… compatible with Tanner Stage II development!” So, should we be concerned? (Getting slightly more alarmed and annoyed)
No, she says. Look here at the pelvic report. It says the uterus is not in puberty, but the ovaries are enlarged, and consistent with early hormone stimulation.
Stimulation from what? Because now I am confused. Is this puberty or not?
So, I kid you not, she draws me a picture. A crude picture of two breasts, a uterus and two ovaries. She puts a small dot on one of the ovaries and Xs it off. She says that at some point she “probably” had a cyst on her ovary that caused her body to think it was in puberty and it began developing. But don’t worry, it stopped because the hormones in the brain are not awake.
WHAT? Has anyone told her body?
I don’t need to see you again, unless you have a problem…as she pushes me out the door.
What about the sonogram that suggests clinical follow up?
UM, HOUSTON…. we DO have a problem!
I swear I almost asked for my CoPay back on the way out.
Is there anyone who gets that Cowden’s Syndrome is a RARE disorder characterized by a mutation on the TUMOR SUPPRESSOR gene? If the body and the labs don’t agree, I think we probably have to look further. Just in case there is a tumor somewhere that didn’t “fall off.”
Everything about this, from the difficulty of scheduling it at a major NYC hospital, to the way the report was written in the double speak of maybe its normal, maybe not, to the contradictory interpretation by the doctor from what she sees on the body and the paper, makes no sense to me.
I have nothing against weather reporters. But they are wrong a lot. Their life is of guesses and predictions. I guess I hoped for more from the doctor than Cloudy, With a Chance of… Puberty!
I will get my umbrella, my Mommy mouth, and all my questions. I will keep asking until we get some answers. But really, why must it always be such a battle?
In the midst of Memorial Day celebrations, and honoring our veterans, I was somewhat consumed by the those thoughts. I have to admit.
Silicone sweats.
AND I have to find a bathing suit.
I know the mercury was at about 90 degrees in New York. We opened the pool so my daughter could swim. Usually I would be right there with her, but that is a no-no on my hysterectomy recovery list.
My bathing beauty taking a swim in the Disney hotel pool. She LOVES to swim.
She is plenty tall enough to swim alone. So I watched her from the deck, and I sweated. It wasn’t my normal sweat either. The sweat was actually pooling through the skin around my silicone implants. I don’t think it was a hot flash. “The new girls” were the only thing hot. But boy oh boy do I need a few more bras to get through the summer!
I could check the internet for some mastectomy recovery site. I could ask if that is normal, but there really is no need. Normal or not – in this body silicone sweats. Plus, by that time I was too consumed with my other reality.
Now, I haven’t gotten the all clear to swim yet, but even if it is another week or two, it will come. Then what? My old suits are now from about 15 pounds ago, and my boobs are a full size smaller than they were last May!
When I refused the tissue expanders as we were laying out my mastectomy in March, I knew I would end up with smaller boobs. I wasn’t even worried about going from a b/c cup to an a/b. It seemed to match my recent weight loss. But I never expected the impact this would have on my shirts! I have had to replace almost every top in my closet for some reason or another. I bought great bras (although with the sweat factor, clearly not enough) but they couldn’t help the shirts. My T shirts had to be sized down, and many of my “fancier” shirts had to be removed. It was a pain, but I finally got a working spring closet that I can live with – for now.
Of course a bathing suit is a whole other situation. My implants are rounder, perkier, and smaller than my other boobs. They are also a bit uneven, (courtesy of the 7 biopsies I had on the right prior to the surgery.) You can see my ribs under my arms – there isn’t any breast tissue there any more. I used to just buy my suits in Costco. Yep, Speedo right off the rack. There was no way I was putting this body into anything fancy. But now what do I do?
Mom will have some advice on this one. Her mastectomy was 15 years ago, but with no permanent implants, she has to find bathing suits to hold her prosthesis. And, she always looks well put together.
Silicone sweats, so I definitely need a bathing suit before we get too far into summer. And this hysterectomy recovery CAN’T go on forever!
If I had a dollar for every time someone directed that comment at my daughter or I, I would be retired – a wealthy woman.
We don’t “look” sick. As a matter of fact we look alike. A lot alike. It’s probably due to the fact that I, having the ‘honor’ of being the first in my family known to have the PTEN mutation that causes Cowden’s Syndrome. To look at us, you would see a vibrant mother and daughter duo – 8 and 38.
We have a lot in common.
When I push her through Disney World in her modified wheel chair each summer, I get the stares that say “spoiled.” When I pushed her through the Susan G. Komen Breast Cancer walk last fall so we could support my mom, a survivor, someone actually said “Why don’t you get the ten year old out of the stroller?” Actually she is 8, and she would much rather walk.
You can’t see the AVM in her knee. The one that has cost her 4 surgeries with an expert people travel the world to see. You can’t know by looking at her that in February he told us he could not “fix” it. That he was placing us under the care of another surgeon hours away. You can’t by looking at her, see the constant swelling. You can not see the pain.
That is because she is ALWAYS smiling. She can work a room, and make everyone feel welcome and important. She is a star student, reading almost 2 years above grade level. She is friendly, and funny. (She had to get something from her DAD.) She is confident enough to dance, and participate in storytelling contests. (Not sure exactly WHO that comes from.)
She takes medicine for pain, medicine for anxiety, medicine for viruses that plague her, medicine for allergies, medicine for her stomach – to ease digestion. She takes countless diet and nutritional supplements. She follows a Gluten Free, Casein Free, Soy Free diet without a minute’s hesitation. She is polite, and extremely well behaved.
I am so proud of her. Last week when she was having one scan after another they called her a “model patient.” Now I must confess when she was a baby and I was wondering what she would be good at, being a model patient wasn’t on my list of aspirations. But since she is good at so many things, the fact that she handles her appointments in stride makes me proud, and confident that she will have the ability to stay out in front of this wretched disease.
“You don’t look sick.”
But yet, we are. She had surgery in February for that pesky AVM. I had a diagnosis of breast cancer in March, and a complete hysterectomy in May. Next month we will take her to have the precancerous thyroid nodules reevaluated, and to have another scan on the knee to pin down when the next surgery will be. Not if, but when.
With all of these ‘invisible” illnesses come worry. It is not uncommon for me to talk to my 8 year old about if she will need a mastectomy, even before her own breasts have developed. She asks me if she will need a hysterectomy. A wild question, when the concept of what she will be when she grows up hasn’t even been ironed out. But she is astute. She knows she will likely walk my road. She watches. She thinks. She asks.
So no, she doesn’t look sick. Neither of us do, but some days reality is tougher to face than others. Some days that happy face is a little harder to find.
So, when she woke up today after PT Thursday, kickboxing, and swimming lessons on Friday, she was sore. Really sore. The celebrex wasn’t helping. She couldn’t bend her knee. I rubbed and stretched. She was annoyed.
She is allowed to be annoyed, here in this house. She is allowed to be discouraged and disgusted. I have been all of those things this week, and I know its important to let them out. I am recovering from my second surgery in less than three months. I am tired. I am annoyed, and aside from a few treasured folks who keep checking in, I am really really lonely. This surgery seems to have pushed a lot of my support network over the edge. They are a bit tired I guess. It’s hard to be there for someone when your own life still keeps going, I know. Especially when they don’t look sick.
So, today she had a turn. She was discouraged about the prospect of more surgery, and disgusted that the knee seems to remain swollen. She mourned her dream of running track. She cried about the permanence of this disease. She told me she wished she could get sick with something “normal” like a broken arm. You know, something that can be “fixed.” She sobbed out her frustration with doctors, surgeries, cancer, and the worries connected with each. She wants to be more like her friends. More carefree.
My heart ached as I held her. She is a tough cookie, but we are all entitled to lose it. I cried because I felt sad about giving this to her. I held her tightly and told her how much I love her. We went through a few tissues, and some long talks. Lots of things I can tell her I understand, and then some things I can’t. I told her she can cry. She can be mad. She can worry. She just can NEVER let it win. She can NEVER let it define who she is. I will always be sorry she had to inherit this, but I will NEVER be sorry I have her. She is my heart and soul. She is my sunshine. She saved my life.
“You don’t look sick.”
She brushed it off after a few minutes. Back to the Ipad, and back to taking care of me. No one outside of my husband and I will ever see her like that. Her carefully guarded emotions will only let loose where she feels safe. No one else will ever know her anguish, her pain, her heartache, her worry. No one, not even our closest family members would ever guess.
I think about all those people, and their quizzical stares. I know I can’t be too angry. They don’t know any better.
“You don’t look sick.”
She and I are a lot alike, in so many ways. And I wouldn’t change a thing. We are going to be just fine.
I wish people would be careful who they impersonate. I am like this “big cat.” Waiting peacefully… until…
Have I mentioned the doctor and hospital bills? Not that we need to pay them very often. We are blessed with two solid insurance policies. It’s the dealing with them. When you are at appointments as often as we are ( and the COWDEN SYNDROME/ PTEN mutation seems to make sure of it!), the errors are countless. And the HOURS on the phone…
I shouldn’t complain. I have been home enough the last few months that I can spend hours on the phone. But, really after a while when you are fighting so hard for your health, and many days your sanity, the incessant battles with billing departments can be draining.
And, when I am at work – that is when I could really use a secretary, or a clone. Either way…
The dreary weather is getting to me. I am lonely. I feel better, but can’t do much. It’s nice to be home, but not with so many restrictions. The internet is full of poison. I can not read one more article on post menopausal weight gain. I am only 38. This is sometimes surreal. Menopause… I should have at least another 15 years for that! So, I try to be productive.
Like the bill I got for a visit to the ER when I was never there. Yep, I was never there. I have made no less than 15 phone calls about this since May 10th when the bill first came in. Everyone is suspicious of me. They have bounced me through departments. I even got a letter from GHI saying the bill was filed electronically using my Social Security number. (Because I needed one more worry.) Seems to me it should be easy to trace. If someone cared.
I just sent an Email to the general bank at the hospital. It was 2 hours ago. They have already asked me for more information and rerouted it to a few supervisors. At least someone is doing something. But me, I am waiting. My credit scores were just printed for our mortgage last month. They were very good. I am sure I need to call and request detailed reports.
Every time I go to the hospital, whether it is for my daughter or me, they want copies of the insurance cards, copies of our driver’s licenses, (mine and my husband’s) and our social security numbers. I never give out my daughter’s – that is the one piece of information I can withhold, but they get everything else or they won’t treat. They have that power.
What I get are the bills. Some of them are just fun to deal with. Like yesterday when I told the hospital that did my daughter’s last surgery that it had to be illegal to bill our primary carrier $40,000 and get payment in full, then bill our secondary carrier $25,000 and get nothing (because the bill was overpaid in their eyes) and then try to tell me I owe a $300 deductible. Nope. Not paying it. The supervisor adjusted my balance to zero when I questioned their billing practices. Surprise.
Now I have the unique job of proving I actually was NOT at a hospital when someone says I was. It may take me all next week, but I will get it done.
Although I would like to have a chat with the poor soul who pretended to be me. Ok my life could definitely be worse – but really, pick more carefully who you want to impersonate buddy.
I am busy here kicking the bottom of a rare disease. I am tired, but I am a fighter. Don’t mess with me – unless you really want to try being me. I fight full time. And like I said, when it’s important – I win.
The surgeon called. Two days earlier than I expected. My heart flipped a little when she said, “I have your pathology.”
“Everything looks great. It was all totally benign.”
Big Sigh… Thank you God. No more cancer. No more surprises.
For a moment there was doubt. Was I too rash? Should I have waited? Then, reality. They told me there would have to be a surgical uterine biopsy every three months. The scar tissue was already extensive. One ovary was twice the size of the other. There were cysts everywhere. General anesthesia is getting harder for my body each time. Who has time for surgery every three months? The worrying. The waiting for when it will hit. No… I was right. This was necessary.
Can I have a copy? I asked.
Well, aren’t you coming in next week?
Yep,but I need to see it. I need to hold it in my hands.
The beep of my fax confirmed receipt of two pages. Totally benign pathology.
Sigh.
Breast Cancer 85% lifetime risk. Got it, but got them off in time. I win.
Uterine cancer 28% lifetime risk (or something close.) I win.
Two less areas to screen compulsively. I really win.
Watch out Cowden’s. I am up 2 nothing. People say I am not that competitive, but when it’s important I play to win.
After I left off on the last post the “nice” man had the misfortune of coming back ont he line and reminding me AGAIN, that I had NO IDEA how difficult this was to work out.
I made him wait before he put me on hold again. “In the fall of last year my daughter and I were both diagnosed with a rare genetic disorder that no one seems to have ever even heard of. The few doctors who have, or who are willing to learn, have put us through every test imaginable. In March I had a mastectomy to protect me from breast cancer. I was pretty surprised to find I already had it. Last Wednesday I had a complete hysterectomy. I am 38. I was told the risk of NOT having one was too great. My 8 year old daughter has grown 7 cm in the last 5 months. She has grown 2 shoe sizes. She now stands 4 foot 9 and 73 pounds, and will not turn 9 until August. Her endocrinologist, the local one – not the cancer specialist she sees for the thyroid – has tried to educate herself about this syndrome. She examined my daughter and said it may be precoucious puberty, but it may be too early for that. Sometimes a tumor can hide and mimic puberty. I know a mom whose 8 year old has Cowden’s. She is 22 now, but at 8 had ovarian cancer. They had told her it was precocious puberty. We are at a doctor, for something, AT LEAST once a week, usually more. So, if you think I am crying because I am weak. Think again. I am crying because I don’t want to yell at you. I am crying because I am exhausted. But, if you tell me one more time “I don’t understand” how difficult this is, I WILL explode. You think it’s difficult to schedule. TRY LIVING IT! This is MY LIFE!”
Silence.
Still Silence.
Hello? Are you still there?
The “nice man” on the other side of the phone says simply, “Wow. I had no idea.”
“I know. But you do now.”
Yes. And I am going to make this happen as painlessly as possible. I will call you tonight. (HAHAHAHA I thought)
The phone rang at 5:30. The breast sonogram will be today, right after the pelvic. Someone from the breast imaging center will walk over to where we are to oversee. The results will be available to my doctor by Tuesday. It will be a long weekend, but we are used to that.
I bet I can finish this post before they take me off hold. I have been on this call for 28 minutes so far. I have been transferred 4 times. Finally I cried. That got me a sympathetic male supervisor. Sympathetic in that he has left me on hold for 20 of those minutes, but has checked in on me 4 times.
How do I do this when I am at work? Fortunately I haven’t been at work much, but I understand how people lose their jobs. I am a teacher. I can’t spend a period with my cell to my ear waiting to be off hold while I teach. It just doesn’t work like that.
The breast ultrasound. No one wants to do it. I get it. She is 8. It’s odd. Get over it and do your damned job! No one wants to be responsible. Guess what idiots? We have to check. And if you know what a normal breast looks like – this shouldn’t be so tough.
Anyone care that I don’t want to do this either? The reality of it makes me ill. Anyone care that I am only 6 days out of major surgery, my anxiety is at a peak, and haven’t even told her we are going yet? Anyone else give a shit that this isn’t just a weird scheduling inconvenience? This is Cowden’s Syndrome. This is our life.
The man (the call is at more than 35 minutes now) just came back to tell me he hasn’t forgotten me, but this is a lot more than I think. REALLY? He is lucky I don’t take the time to tell him what I think. Maybe he isn’t so nice after all.
Her bloodwork was Saturday – the bloodowork to check the hormone levels. Wednesday I will take her for a pelvic sonogram. They are still trying to figure out who will do the breast sonogram. Everyone is afraid. No one knows what they are looking for. Major NYC hospital, and everyone is afraid. It doesn’t instill confidence. When you have a rare disease, no one knows quite what to make of the realities that we face. But this is my girl and I will not put my head in the sand. Someone will do it.
She danced this weekend. It was her second recital. She will not dance on Broadway, but to her proud parents her smile was worth a million bucks. Her ability to move – courtesy of PT and Celebrex, and her award winning smile. For a few minutes on that stage, she was just like everyone else. Sometimes its nice to be “normal.”
In a few minutes I will call to schedule the next MRI/MRA of the knee to check on the “leak” from the femoral artery causing her AVM. We will do that the last week in June, just in case she needs more surgery, there will be time in July.
Of course all that depends on the hope that our June 14th appointment to check on the thyroid nodules is uneventful. “They are precancerous. They will turn. We just don’t know when…” At some point she will lose her thyroid to cancer. And we can only wait.
Sometimes its good to be home. To recover from surgery. To make some phone calls. Sometimes it just lets the worry fester. I can accept that I have this damn disease… but why did it have to mess with my girl? As a new internet friend eloquently said – eff you Cowden’s!
My husband says I need to be more confident about my body. He tells me that I am beautiful. I am lucky I know, because he really feels that way. He doesn’t understand my uncertainty at all.
I have always struggled with body image. I have always exercised, and eaten fairly well. There have been times of high weight, but my 5 foot 8 inch frame has always held it well. The last few months have been a bit of a roller coaster though.
Anxiety medication worked to keep the heart palpiations and the panic attacks under control, but it couldn’t give me back my appetite. I was down 30 pounds before the mastectomy. Now, 11 weeks later there are days when I forget. I forget the breast cancer that hid from the tests, the mastectomy that was supposed to be prophylactic, and the silicone that now lives under my numb skin. I forget – until I look. Then I see the huge scars, and the slightly uneven implants – not a surgeon’s error, but rather the error of 7 biopsies slowly removing the skin on one side over 14 years time and my refusal to endure tissue expanders and all their extra risks. I see… I feel…
Now I am home recovering from the complete hysterectomy. Another huge cancer risk removed from my list, but as I await the final pathology the reality that all my “girl” parts are gone – sometimes hits home, and it ouches a bit. What will instant menopause be like? I am not even 40, but I am sure I will know soon enough… Will my thyroid go totally nuts -again? Will I gain back every pound I lost? What will happen to my metabolism, my body?
And what about all these screenings still to do? There is already a harmatoma on my spleen, and a huge gallstone. That is before we have checked the skin, the kidneys, the colon.
I have to focus. I am not Cowden’s Syndrome. I am only a patient who suffers from it. I am still me. Neurotic, loving, caring – me. I will not let this disease define me, or my family. If I do that, it wins.
So maybe today I will look in the mirror. I will try to see the me that my husband sees. I will continue to recover, again. I will think about tomorrow when the sun will shine. I will emerge from this – better, stronger, more confident, and more beautiful. If I let it happen. I am not defined by the sum of my parts or by any disease. I am defined by my soul….
beatingcowdens 