Maybe that should be the slogan for 30 something (ok closer to 40, I know) women who have been thrust into menopause. Kind of like the equivalent “Put on your big girl panties…”
Estrogen loss and menopause. Two more things I can thank Cowden’s Syndrome for, as I learn all the side effects connected with both – one at a time. At least I can relate to… well, not really ANYONE in my age bracket. But that’s Ok… I am getting used to it.
Fortunately it hasn’t been THAT bad yet, but I have found myself a little sweatier than normal, and I have been known to stick my face in an air conditioner lately while throwing an ice cube down my back.
I am not one to complain too much, but really, the reality of this one took a little time to catch up with me.
Yeah, I know it had to go. Blah, Blah Blah… Cowden’s Syndrome, uterine cancer, suspicious polyp. I get it. Oh, and your ovaries are way too big, too many cysts, let’s take those too. Sure – why not?
Nothing would have changed if I had asked all the questions in the world. It had to be done. And I am learning sometimes it is better not to know everything at once.
So, I am hearing words like calcium supplements, bone scan, and osteoporosis, while I have friends my age going for 20 week ultrasounds. Don’t misunderstand me. I never wanted another baby – but it just seems wrong. Like I have warped into a different reality.
That’s what these last few months feel like sometimes. A bad sci-fi movie. I am the girl who gets all her body parts cut out, one or two or three at a time.
I wonder how it ends.
And, most importantly I hope the movie theater has air conditioning. It’s HOT in here!
This year I am obsessed… well with quite a few things, but one of them is not (directly) medical.
This year I am focused on a high quality, everyone looks their best, everyone is smiling, family photo.
We are a family of three. Immediate family that is. (Not including our furry friends Allie, and Lucky.)
Our extended family includes his parents, two sisters, a brother-in-law, and three nephews. On my side, there are my grandparents, (Mom’s parents, my step-dad’s Mom, and my father’s mom) as well as my mom and dad, my father, my two sisters, a brother-in-law and a half-brother, and two nephews. That list doesn’t begin to address aunts, uncles and cousins galore on both sides. Yes, they are all family, but reality will never put them all in one place at the same time, and there are probably some blessings to that. While I love them all dearly, I often say you shouldn’t mix drinks, or extended family!
We have been fortunate enough that we have been able to travel to Walt Disney World in Florida for the past 4 summers. We will be making it a 5th this year. We save and budget all of our “fun” money for a Disney vacation because for their extremely high pricing, we get “allergy safe” meals wherever we eat, and unlimited access for Meghan’s push chair, which she often needs when we travel more than about a half mile. It is the best week of the year for all of us.
It is usually the week of Meghan’s birthday. It is doctor free, no needles, just be “normal” week. We take LOTS of pictures. Usually it is of Meghan alone, or of one of us with Meghan. They are great photos and I treasure them. The few photos we have gotten of all of us in Disney usually have us in sweats, and sneakers – SWEATING. This year we are going to go to the photo studio, and I don’t care how much it costs. Meghan and I have dresses picked out, and matching sandals too. (We just need to pick out something for Daddy who after deciding “stress eating” isn’t the way to go, is down over 20 pounds!)
There are so many reasons why I am focused on this photo. It is FUN to focus on something FUN.
I have been smacked in the face with the reality of the frailty of life. In March I was given a “second chance” as I was told the breast cancer that was “sneaking up on me,” unbeknownst to any doctor – was gone. Gone after a “prophylactic bilateral mastectomy.” Gone before it had a chance to wreak havoc on my life. Gone. But I will not forget the words of my surgeon, “If you had waited until July to do the surgery you would have likely been in a fight for your life.” Instead, I will go to Disney World.
Not lost on me is the reality that 15 years ago next month my Mother finished up treatment for bilateral breast cancer. She is strong, a survivor, still here, enriching our lives.
Not lost on me is the cancer scare AGAIN in May, as they worried about a malignancy in my uterus, before performing a hysterectomy.
I am vividly aware every moment that the thyroid specialist who monitors Meghan’s “precancerous” thyroid nodules, took back his invitation to come back in a year, and said, “we better see you in 6 months. One nodule is starting to dominate.”
I am painfully aware every moment that after one of the strongest, and longest battles I have ever witnessed, we lost GGPa in June to cancer.
My stomach, and my heart hurt for the victims of the senseless attack in Colorado this week. Families out to see a movie – life ended so tragically.
I love to look at pictures. In an age when people have stopped printing them, I have shelves FULL of albums. I love reliving memories, and smiling at al the good times. The albums remind me, that no matter how tough things seem, there ARE LOTS of good times.
Cowden’s Syndrome, PTEN mutation, cancer, NOTHING can take away the memories or the good times. So since 2012 has been quite the year, we will take a “fancy” family photo. One that will hang somewhere in our house and remind us that we can endure the tough times. One that will remind us to hug each other tightly, and to kiss each other when we leave, and to never stay angry over nonsense.
One that will remind us that we are defined by our spirits, and not by the sum of our parts.
See… all it really takes is for the wrong person to tick me off, and the tears just dry right up!
We went out today. I told you I like Saturdays. Family days. No doctors. We went to visit my parents, and my grandparents. Saw my sister and my nephews. Then we spent the afternoon with friends at a birthday party for 3 year old twins. Good times. I was even able to eat a slice of pizza. I have had less than no appetite these last few months, so I was impressed. Feeling pretty good we got home around 6 – and took in the mail.
It was clearly a bill, but I wasn’t prepared for it to read $750, “previous balance.” Followed by an admonishment that we should pay immediately.
Again I repeat, “HAS EVERYONE LOST THEIR EFFIN MINDS?”
There are things we don’t do in this house. We never give money to phone solicitors, and we NEVER pay a non itemized bill – ever. Not even if it is for $7.50.
So I went down to my very thick “pending” file, to find that on November 29, 2010 (because this is for surgeries in December of 2009 and April of 2010) I sent them a LONG and detailed letter with all the EOBs attached, stating why I owe them nothing.
Really, stupid people who choose not to do their job, and make work for other people REALLY annoy me!
As I got all fired up for Monday’s battle, I noticed the answering machine was flashing.
Checking the message I saw it was a Massachusetts number. At 4:30 PM today, apparently Dr. K from Boston was in his office reviewing Meghan’s MRI.
I sent him the report yesterday after my visit in NYC. I also sent him a cover letter which essentially said, what Dr. R had concluded – that there was no mass in the knee, and that Meghan is still having some pain in the knee. I closed the brief cover letter by asking him to keep the report in her file should I need him at some point in the future. I made a point of telling him “If I do not hear from you I will assume you are in agreement with Dr. R’s findings.”
SURPRISE! More opinions weighing in from up north in Boston.
Dr. K’s message said the knee MRI “looked good” in terms of him not seeing blood on the joint. He said, ” I know what you wrote about Dr. R not seeing a mass. I just think if she has symptoms you should bring her to me for evaluation. Give it another few weeks and come up in the early fall.” (Sure…. no conflict with the school calendar there)
Relieved to hear the “old boys club” doesn’t supersede professional opinion in this case.
As for what happens next – who knows? Every day is a great adventure for sure. At least the Mommy Monster is back in full swing. Looking forward to fighting the good fight Monday morning.
I will probably call Dr. K – just to be clear on his thoughts too. It’s Saturday night. Monday’s agenda is set. And I have set my own internal countdown to Disney – the family vacation. Keeping my eye on the prize. God willing the doctors can’t find us there.
Headed to bed now. Tomorrow I will take my family to a cute little church a few miles away from the one I grew up in. The people I love aren’t there, but they are nice people too. And we will thank God for the blessings that have come from a week of ups and downs.
Cowden’s Syndrome is exhausting… but we can take it!
Summer Vacation began today. Yesterday was the last day of school for Meghan and I until early September.
I love this time of year, where I always say I get to have one full-time job (stay at home mom) instead of two. Well, maybe it’s two full-time jobs – medical manager of all things Cowden’s related, AND stay at home mom… But either way it is a break from the responsibilities of work, with all the benefits of still receiving a paycheck.
Meghan’s report card was beautiful. She makes us so proud. We talked all about the end of third grade and the beginning of fourth. We ordered a new backpack (Have to order early if you want that special GREEN!)
Then she asked what we would do today, to start off our first real vacation day. I don’t think she was surprised when I answered with, “A doctor’s appointment and an MRI.”
So this morning I got up at regular time. I watered the vegetables in our garden which is growing so beautifully this year. I made sure Meghan was dressed, and the dogs were crated. And we walked out the door at exactly the same time we caught the school bus every morning for 10 months.
We made it to NYC in time for my surgical follow-up. I have officially had all restrictions lifted, although the chronic bleeding continues! I was told not to worry, and it should be gone in another 4 weeks. Delightful.
Then, we walked a few blocks to the knee MRI. She was in the tube at 10:02, with only 0.25mg of xanax to take the edge off, and lasted in there until 12:05. unbelievable. They told me they had 5,000 images. I left with a CD in hand, and a promise there would be a report by Monday.
We got home in time for a quick lunch. I managed to get the CD of the MRI, combined with a cover letter, in an envelope to Dr. K, head of orthopedics at Children’s in Boston, and sent it off in the mail. Some time next week he will call to tell us if the date for surgery will be sooner… or later.
We made it to a friend’s pool for a few fun hours, to try to salvage the day. She went to bed exhausted, and soon I will too. I hope this isn’t an indicator of what summer holds, because I am striving for a serious amount of doctor free days. More time with the kid, the pool, and the tomato plants.
Some days I forget. I really do. Some days the thought that I had my boobs cut off and replaced with these round silicone implants doesn’t even cross my mind. Then, there are other days.
This morning I took a shower. Not a rare occurence, but maybe it was rare that I wasn’t late. That I had time to really look at things. So I looked in the mirror. First, at the small hysterectomyscars that are healing quite nicely. (While I still have ISSUES with whatever is provoking the NEVER – ENDING bleeding inside, the outside scars look great.)
Then, I looked up. Staring me right in the face were these perfectly round circles where my boobs used to be.
There is a scar across each one. No nipple on ether. There is also the most bizarre indentation under my arm on both sides. I looked at it for a while. Then I realized it was my ribs. It just looks weird. And wrong. There should be some kind of tissue there hiding my ribs. I am sure of it.
I took a few deep breaths. I reminded myself that I would have the luxury of drying my large head of curly hair – because the cancer that was hiding in the left boob was gone. For good. No treatments. No worry. Just have to get used to the new landscape.
I put on my bra. One of the new ones with the A cup. I tightened the straps. I wiggled this way and that. Still there were these huge gaps. Even the bra people don’t figure on what you are supposed to do to cover ribs where they shouldn’t be.
I did manage to get it together, and get out the door to work. I am sure no one noticed any of my insecurities as I went about my day, but they were there. Nagging me.
Since I am somewhat of a masochist, I decided today would be the day to try on the bathing suits. There were 6 in all in my drawer. Four of them literally fell off of me. One was full of “extra fabric” as my husband put it, and the other one – well that one wasn’t so bad at all. A relief I guess that when I get the OK from the hysterectomy surgeon, at least I have a suit to put on.
I went tonight to the mastectomy section of an online retailer to buy myself a real suit. I was so confused. Unsure of my own size, and which will cover enough, I settled on a (way too expensive for my taste) tankini. It should arrive in a few days. Maybe it will even fit.
Summer is coming, fast and furious. Whether I like it or not, the new body is making its debut.
Look out world – with a slightly flatter belly, and some perky new boobs – here comes the new me.
At least I don’t have to worry about my nipples sticking out at all the wrong times!
“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.”
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.
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?