Wow… I though I was going to get away with this. Then, almost 4 weeks later, I am sitting here and there is this heat, creeping up from my toes. I swear my skin was crawling with fire. Up the legs and the back. As I went grabbing for something to get the hair off my neck and wiped the beads of sweat frantically forming on my brow.
Inhaling a bottle of water, I can’t help but hope that my body doesn’t make this a habit.
Our bodies are under attack. This PTEN (tumor suppressor gene) is broken, and we are being bombarded with cellular overgrowth in the form of all sorts of tumors – benign and malignant.
We spend our days, (and some of our nights) strategizing on how to prevent, fight, or get rid of these tumors.
It can be an all-consuming job.
When we have to have the tumors removed there is the recovery time, which can seem endless. The battle scars, which forever change the landscape of our bodies also take some getting used to.
There is the financial drain, from lost wages, and the endless battles of medical bills are a war onto themselves.
There is also the battle of trying to feel well all the time, while convincing people that this is a legitimate illness, and you really are sick.
This is a war my daughter and I are fighting together. Each on our own road, but we are battling the same enemy.
Like in every war it is inevitable that there is collateral damage.
Haughton play park 20070602 (Photo credit: Wikipedia)
Today was the 3rd grade play at my daughter’s school. It was also “Family Fun Day,” where the parents and children in the entire 3rd grade head to a local park and spend 3 hours chatting, playing and sharing a picnic lunch.
It was about 82 and sunny here today. The weather hasn’t been this perfect in weeks.
And I, I was at work. My daughter was at “Family Fun Day” with some very caring mothers of the friends she has in her class.
How is this all connected? Very easy.
If I were not me, fighting Cowden’s Syndrome, and all its ramifications, and taking care of a girl who is also fighting it… maybe I could have been there.
Instead, I missed 4 days of work for her AVM surgery, 24 days for my double mastectomy, 12 days for my hysterectomy, and when there are only 183 school days in the year, you can see the percentages aren’t good.
I got permission to go in an hour late. I got in to see the dress rehearsal of the show. I stole 10 minutes on my lunch to drive by the park. And I spent the whole day thinking how nice it would have been to just take a personal day and hang with my kid.
She is such a good girl. “Don’t worry Mommy, I understand. I am so glad you are feeling better, and I know you need to get back to work. Maybe next year we will all have less surgeries, and then you can come?”
Collateral damage – my girl having to grow up so damned fast.
Elementary school kids can be really cute. Sometimes. I have been out more than I have been in these last few months, but since I have been at my school a long time I have a relationship with many of the kids and their families. So, when I walked back in on Monday I was accosted by small people, all of them waist high. Hugging my belly and telling me how much they missed me.
Um, thanks… and OUCH!
I smiled as I tried to slip away from them without offending anyone. They are so innocent. Not a single one thinks to ask why I was gone, they are just happy to see me.
I walk to my classroom, carrying my extra light bag that weighs 6 pounds. I know this because I was told to carry nothing over 10 pounds, so my overprotective – God I love him – husband brought down the scale we use to weigh our luggage, and checked on my bag.
He knows I like to drink a LOT of water during the day. He brought a case to my room, so I wouldn’t have to carry it. He is a pretty good guy.
I sit and look around. It has only been a few weeks again, but it looks strange. Different. I get the sense I am not too sure I belong.
Then I look at my schedule. Classes are coming. Real classes, expecting me to have lessons for them.
You mean I have to teach too? Wasn’t getting here enough?
I made it through – thankfully my days were shortened so I could deal with other issues.
I was OK with coming home from the hospital right after surgery, but did this doctor really know what she was doing sending me back to work in less than 3 weeks? Probably.
My surgery site barely hurts, and aside from some light bleeding, things are getting better. I have to keep behaving, and that is hard. Very unlike me.
It was probably good to get up and out of the house. To be around people. To be reminded that life isn’t just about me and life goes on while you are home recovering from surgery.
I am just so incredibly TIRED!!!!!!!!!!! The deep, bone crushing kind. I need my energy back.
Tomorrow there are no kids in school. Staff development for the teachers. I am starting to feel like I have a purpose again. Less wallowing, more working.
My clothes are all picked out. Let’s see what they make of my favorite breast cancer ‘survivor” T shirt. I may be exhausted, but I will be sure my sense of humor follows me to work and wherever else I go.
If we can’t laugh at ourselves, and our own lives, we are in a LOT of trouble.
I am tired. Not just the physical tired, but the mental and emotional tired too.
My body is exhausted. Tomorrow I head back to work. Two major surgeries in 3 months. I think my incisions might be healed, but I am just so wiped out.
This recovery from my hysterectomy has been nothing short of obnoxious. The bleeding seems to have subsided, and the pain is gone. The restrictions are still in place, but the hardest part has been feeling so damn alone.
Days go by, the phone doesn’t ring. Not a text message to check in. Not expecting fanfare here, but a little love from my friends and family would be nice. Now there are a few. There are always a few… but even with them, I am lonely.
That loneliness hasn’t helped me feel better. No. Not one bit. Combine that with the fact that my dear husband, who truly tries his best, is in school 2 nights a week, and has worked more overtime in the last 2 weeks than he has since December. He can’t say no. Not in this economy. And he so rarely gets called. Timing sucks.
So it has been me, and my girl. She is awesome. Yesterday when we realized Daddy definitely wouldn’t be home, and we were dangerously low on food, she came to the grocery store with me. She didn’t let me lift a thing. She packed the cart, packed the bags, and carried them right into the house. She is awesome. But, she is tired too. She is always willing to take care of me. But she is 8. A friend would make for a much better weekend.
So, today I took her with me to a meeting at my church. Remember a few weeks ago when I said, “I don’t have a problem with God…it’s His fan club…?” Well that is getting more true by the day. I can actually say I was disgusted by my minister, and a large portion of my church. The church where I have grown up for the last 38 years. Things are tenuous between the pastor and myself, I would say largely due to his LACK of support, but he did not even greet my daughter or myself at the meeting. She is so astute. I am trying to channel her energy away from anger, but she feels the hurt in me.
I know there is a plan here. One larger than me, larger than any of us. I do believe strongly in God and His guiding hand. I have been blessed with several miracles, and witnessed others. I know He is here, but I do not often understand His plan.
So, in the midst of all the chaos, the drama, and the confusion, I seek solace in music. I remind myself that these people who are so painfully absent – don’t mean to be hurtful. Those full of drama are lacking the bigger picture. I never lose touch with the reality that I am not the only life struggling. There are so many others, so much worse off. But for now, for right this minute, it doesn’t change the fact that I am sad, scared, and lonely. No one really wants to hear it, because they can’t fix it. But its true.
I have always believed everyone does the best they can with what they have where they are. So, even amidst my sadness, I do not have anger. People have their reasons.
Tomorrow I will go back to work. I will smile brightly as if I was without a care in the world. Even if my bones ache from exhaustion, and my heart aches to share this pain with those I love, I will smile. I will get through the days, one at a time. And I will always have a song in my heart to help me.
So your life feels like it don’t make sense
And you think to yourself, ‘I’m a good person’
So why do these things keep happening?
Why you gotta deal with them?You may be knocked down now
but don’t forget what He said, He saidI won’t give you more, more then you can take
and I might let you bend, but I won’t let you break
and No-o-o-o-o, I’ll never ever let you go-o-o-o-o
Don’t you forget what He saidWho you are ain’t what your going through
So don’t let it get the best of you
Cause God knows everything you need,
so you ain’t gotta worryYou may be knocked down now
but just believe what He said, He said
I won’t give you more, more then you can take
and I might let you bend, but I won’t let you break
and No-o-o-o-o, I’ll never ever let you go-o-o-o-o
Don’t you forget what He said
Don’t fear when you go through the fire
Hang on when it’s down to the wire
Stand tall and remember what He said
I won’t give you more, more then you can take
and I might let you bend, but I won’t let you break…
I won’t give you more, more then you can take
and I might let you bend, but I won’t let you break
and No-o-o-o-o, I’ll never ever let you go-o-o-o-o
Don’t you forget what He said
Johnson and Johnson Band Aid 2 (Photo credit: Wikipedia)
WARNING, some of this text may be a bit graphic, and might be better reserved for those recovering from a hysterectomy!
Enough with the bleeding already. That’s it. I am done. Over it. I had my hysterectomy 2 weeks and 2 days ago. I didn’t know headed in that I was headed for 4 to 6 weeks of bleeding. I thought this was supposed to make the bleeding STOP!
I guess if I had stopped long enough to think about it, I would have realized that the removal of a few things inside of me makes it necessary to stitch up a few other things, and as they heal it’s not unusual for them to bleed.
BUT, what is with the stitches? (No not that STITCH! You know what I mean!)
Stitched up Stitch (Photo credit: amesis)
Really it is easier to heal mentally from an external surgery than an internal one. At least from the mastectomy I could watch the wounds close. I could be sure I wasn’t doing too much. I watched the bruising fade. I knew I was getting better.
Now, just when I think this bleeding is letting up, (and it’s not all THAT heavy, but just REALLY annoying) a stitch falls out of me, I begin to cramp, and on go the faucets again.
Faucet (Photo credit: Joe Shlabotnik)
The doctor said the stitches are coming out a bit too early, but apparently they don’t care, because they are coming fast and furious. Apparently my body seems to understand me when I say that stitches belong outside, not in.
What I want to know is why every time I think all is calm, there is this surge of blood. Enough to scare the heart out of me. Then, just like that it stops.
It seems to be taunting me. Daring me to switch to the lighter pad, but I won’t do it. Not yet.
I have cramps today. The kind I would equate with sore boobs, and a craving for chocolate while I wait for my period. Except, I don’t have any boobs – at least not ones that will be sore, and I won’t be getting my period ever again.
So what is with these cramps?
I am convinced stitches belong on the outside, where you can keep an eye on them. I told them my body doesn’t like dissolvable stitches. I guess I have to sit tight and wait while it cleans them out.
“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.
beatingcowdens 