Daily struggles – Page 38

“Tell Me All Your Thoughts on God…”

Published on August 5, 2012 by beatingcowdens4 Comments

lutheran church, sydney (Photo credit: Wikipedia)

The line rings in my head. The internet gives me the artist’s name as “Dishwalla.” The song doesn’t make a whole lot of sense to me, but then again the whole religion thing can be very confusing.

I have a belief in God, and faith that there is a higher power running the show here. In many ways that confidence keeps me sane. I mean, what would be the purpose of it all?

Don’t get me wrong, I don’t believe that we are selected to suffer. Not with cancer, tumors, genetic disorders, or anything of the sort. I do however believe that God can give purpose and meaning to our lives. If we seek it, we get confidence to endure the tough times, and purpose. A “share your experiences,” be helpful in every way you can, “pay it forward” kind of purpose.

What I haven’t sorted out, even after all these years, is well, what are the rules?

I mean, I was raised Lutheran. I was baptized, confirmed, married, and baptized my daughter in the same church. I spent my youth in that church. Survived high school with close friends there, and always enjoyed the connection with the people. I believe in the theology I was raised with, and I love the people I worshipped with for so long. But I no longer believe in that church.

The minister has been there for almost 2 years. Long enough to know the people in the congregation he serves. And yet, I have gone through one of the most emotionally tumultuous years of my life and he has never extended a hand. We had a long talk about it. It yielded nothing. He doesn’t care. So, I haven’t been to worship there for months. I would be lying if I said it didn’t hurt me. It pains me deeply. But to me worship has to be about God, and it has to be led by people of God.

See, to me it doesn’t matter if you are catholic, Lutheran, or any other of the million religions out there. I believe for the most part we all serve the same God. What matters to me are the underlying values that go with being a person of faith.

Are you kind to others? Are you tolerant, and understanding of differences? Do you judge others, or do you leave the judging to God? Do you extend a hand to a friend in need? Do you lend an ear when someone needs to talk? Do you hug your loved ones? Do you value, truly value the gifts of your family, friends, and those you are yet to meet?

Those are the questions I ask myself as I interact with people each day. And I ask those questions of ME, not them. It is my role to be there, to be a person of faith, to share my love for others. I don’t think it has as much to do with what building you walk into, as it does with how you live your life.

My brother-in-law is a Lutheran minister. And, while I have at times not always agreed with him on everything (who does?) he models what a Christian leader should be. He has been there for me, as I try to sort out the many thoughts in my head, and his words have provided me some clarity on some tough issues.

So, I know I guess, what I need. Now the question is where to find it? I made a promise when I had my daughter baptized that I would teach her. I do, but I would like so much to have a “home” base where she can be comfortable again. This is all so confusing to her, and yet even as I watch, her faith grows.

We tried another Lutheran church. I am just not feeling it. We are floating right now – seeking. But God has a plan. Of this I am sure.

You see I am confident that the same God who sent the angels to watch over my daughter and I. The one who blessed us with this Cowden’s Syndrome diagnosis (yes, you read “blessed” because as I see it, if she had not ever been diagnosed I would have died of the breast cancer that was hiding inside of me,) will stick by us, no matter where we travel.

I will continue to do my best to live the life of a woman of faith. I previously sharply defined myself as Lutheran. Now, maybe Christian is just a better term.

Forgive my ramblings, and I know this is a touchy topic. But if you are reading this – drop a comment. For lack of a better phrase,

“Tell Me All Your Thoughts on God…” I really want to hear them.

Persistence…

Published on August 3, 2012 by beatingcowdensLeave a comment

My daughter found this photo the other day. She was searching “funny dog photos,” and stopped when she reached this one. She came to me and said, “Mom, I think you will appreciate this.”

I don’t know whether I was more impressed by her ability to know that I would in fact get a good chuckle out of this, as it seems to be the story of our lives, or by the photo itself.

Ingenious really. People do this. They create these photos, and some seem silly or insignificant. Until there is one photo, phrase or saying that you really relate to. Then somehow it all makes sense.

As we turn the corner of summer into August, I know we still have a few weeks of vacation left, but I start to reflect.

School begins for me on September 4th, and for Meghan on September 6th. When we share our summer vacation stories, what will we tell?

We snuck in some fun. There were some play dates that were a blast. There was a trip to the beach, even if only for a few hours. There was swim class, and dance class too. There were books galore – read just for fun – far after the three she “had to” read.

But this year there was no camp. And it was strange. I missed the schedule a bit, but it was a necessary break – for both of us.

Practical reasons wouldn’t have allowed much attendance at camp. We were at too many doctors.

Darn Cowden’s Syndrome. Check this, scan that, see this doctor, make sure that is ok. Multiplied times two it could be a full time job. But, since I have a full time job, that I missed an obscene amount of days from last spring while my body parts were being cut away – summer is for all the doctors that we can squeeze in.

Ironically, no one really answered too many more questions.

Persistence.

Before the end of August Meghan will have had 8 (very productive) Physical Therapy sessions, 3 visits to the pediatrician, a trip to the vascular surgeon, the rheumatologist, the oncologist, the geneticist, the orthodontist, our “second” pediatrician, and she will have had an MRI and 2 sonograms.

I didn’t do so badly myself. I will be able to boast 3 surgical follow up appointments, 2 trips to the dentist, a visit to a new oncologist, which leads to a visit to a GI doctor, and abdominal MRI, a dermatologist for a skin cancer screening, and a visit to the thyroid surgeon.

And those are just the ones SCHEDULED through the end of August.

Persistence.

Not sure where it will get us. All these doctors. I will get them on a nice schedule though. Start to consolidate. Double up days. Next Tuesday I have 3 appointments in a row. Why waste time?

They want us to add the cardiologist back in. Just to be safe they tell me. Everyone is so busy covering their own ***, they often miss the important stuff.

I get that the screening needs to be, and that it needs to be intense. It could be argued that this intense screening saved my life. But there is still such a need for doctors with a clue. Doctors who care. Doctors who connect the dots.

Persistence.

Although some days I feel like the dog, digging through the concrete… I do believe it will all pay off.

Actually, it already has.

So maybe it isn’t the “perfect” summer, but its a necessary one. Me and my girl…. together.

My Most Special Gift

Published on July 31, 2012July 31, 2012 by beatingcowdens1 Comment

Meg and dogs — Lucky, Meghan and Allie – My three girls

I am sitting on the couch, alone. Unable to sleep because of the pain in my knee.

My left knee and I have quite a history. Pretty much told it was “arthritis” as a young one, but that was never confirmed with lab work. A car accident in 1991 banged it up and started the swelling on and off. Arthroscopic surgery in 2000 to “clean” it out, gave me relief for a few years. Now it, along with the horrendous varicose veins that plague my legs, are temporarily at the bottom of the triage list.

There are other things that we need to do first. Plus, we can’t spend our WHOLE life at the doctor.

So, when I am in my worst pain. The kind that causes me to actually ice and elevate the leg, and I start to feel sorry for myself I look at my daughter’s face and find my perspective.

I will be 40 in a little over a year. My joints have had some time to wear and tear. She will be 9 in a week. She can’t run or ride a bike without pain in her knee. She deals with a mass almost 3cm x 1cm intertwined in the side of her knee.It is always there. Even on the “good days.” She lives with he reality of the AVM that will continue to exist- to grow, and then be worked on, likely to only grow again.

As I climb the ladder closer to “middle age” thinking in terms of pain and management for the “rest of my life” is less scary. Then there is my girl.

Soon to be 9 years old. Gluten, dairy, soy allergies. Pancreatic insufficiency,chronic herpes simplex infection, immune system deficiency, early puberty, Cowden’s syndrome, gall bladder removed, tonsils and adenoids removed (and now growing back), lipoma removed from her back, excess gum tissue removed from her mouth, precancerous thyroid nodules, and an AVM that even after 4 surgeries just won’t quit.

Yet she finds plenty of time to laugh and smile every single day, and precious little time is wasted complaining about anything – from the one who could complain all day.

Life isn’t fair, but I am going to sit here with my ice pack and reflect on the fact that God is good – all the time. And He gave me one heck of a sweet gift in my little girl.

Stick Your Face in an Air Conditioner and Deal With It!

Published on July 30, 2012 by beatingcowdensLeave a comment

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!

What do these three have in common?

Published on July 27, 2012July 27, 2012 by beatingcowdens1 Comment

Many simple species, such as the star fish, have the ability to regenerate severed appendages. [©Jupiter Images, 2008]

The leopard gecko, like many other lizards, is able to voluntarily shed its tail as a strategy to escape predation. These lizards are able to develop a replacement appendage through epimorphic regeneration that resembles the original, complete with nerves, blood vessels, and skeletal support.

DSCN1349 — Days after the tonsils were removed in 2008

So, what do these three have in common? Give up? I bet a few of my Cowden’s Syndrome friends could guess…

They all can regenerate tissue that has been removed!

Except the first two tend to do it in a much more productive way.

I had heard tell that lymphoid tissue (especially the thyroid and tonsils) could regrow – especially in Cowden’s Syndrome patients. (It makes sense in a way, PTEN is a tumor suppressor gene that is broken, so cellular overgrowth is common.) But, I chose to ignore it.

Sometimes ignoring things for awhile allows you to deal with other things.

When Meghan had her tonsils and adenoids COMPLETELY removed in May of 2008 she was in the middle of a 12 week strep infection. Three months of antibiotics, and they were still pulling “heavy positive” cultures every 2 weeks. By the time they were to be taken out she was admitted for several days of antibiotics prior for fear of rheumatic fever. She was a chronic, almost constant strep sufferer.

Then for about 2 years – nothing. No strep.

I don’t remember the first time it came back. It was about 2 years ago. A full year before I ever heard of a PTEN mutation, or had any idea what Cowden’s Syndrome had in store for us. I thought it was odd, the strep coming back without the tonsils, but I chalked it up to a rotten immune system.

Slowly the cases have become more frequent. It is almost constant. We don’t leave the pediatrician without a throat culture and a script for an antibiotic. Not all the cultures come back positive, but you can tell. The food avoidance, the tough time swallowing, the swollen glands, the puss in the throat. You just know.

Lately it has been about once every 3 weeks. Way too many antibiotics to be good for anyone, but strep is way to serious to ignore. So, we keep treating, and wondering.

Today we had a routine visit to the oncologist. I mentioned the strep. She looked in the throat. She said, “Have you ever considered having her tonsils out?”

That’s when I knew we were in trouble… again.

Guess I should schedule that visit to the ENT!

No Regrets

Published on July 26, 2012 by beatingcowdens1 Comment

give thanks — Photo found on the Facebook Page “Perpetual Optimism”

Isn’t that just the truth?? Goes along with the idea that “Everybody has Something.” Now if we could all just find a positive way to channel it.

Not always so easy. I cried today. I finally found a nice oncologist who takes my insurance. I saw her on Tuesday, but she wants me to get right on scheduling the colonoscopy. So I called to set up the appointment with the GI doctor and the first appointment was the day after our vacation. As I hung up the phone cried – overwhelmed by ANOTHER doctor, ANOTHER appointment. But it was my very smart Meghan who said, “Mommy if it is going to make you cry, just make it the next week. You can still go, just a little later.” I rescheduled.

My girl is in bed. Sick and feverish. We ducked an ER visit tonight, and am hoping to do the same tomorrow. Along with the Cowden’s she just has a rotten immune system.

Who knows what tomorrow will bring, for any of us?

Tonight I will not be angry about the past, the diagnosis, the syndrome that has taken so much of our time, freedom, and spontaneity. I will instead be grateful. For the geneticist who cared enough to find me an oncologist when I couldn’t. For the pediatrician who has called 3 times since we left his office at 2.

This past year has changed us, for sure. Cowden’s Syndrome has transformed us into different people. But I will never look back at this last year with eyes of regret or sorrow. I look back with gratitude. For the health I have, for the friends that have stood by me, for the new friends I have made, for my family.

Constantly changing, none of us are ever the same. The question is WHAT do you want to change into? I know what I pick…

Mommy is on a mission…

Published on July 15, 2012 by beatingcowdensLeave a comment

I am dating myself now, I know. I was definitely one who watched the “A-Team” in the 80s.

I have no real idea as to how my subconscious works, but tonight as I sat through a few hours of sorting out that $750 bill, I kept thinking of Mr. T.

I PITY THE FOOL WHO MESSES WITH THE MOM OF A MEDICALLY FRAGILE CHILD!

I have it all straightened out. Clipped together and ready. It took me 2 hours, but I figured out the billing error they obviously haven’t rectified in 3 years.

I know exactly what they need to do. But tomorrow I think I will mess with them a bit. Make them send me a few detailed, itemized bills. Then, after they send it all to me, I will let them know if they bill my medical, not my hospitalization (like it says in the fine print) they will get paid the deductibles they are looking for. See, we are fortunate enough to have 2 insurances, and smart enough to use them.

No doubt we could pay the bill if we had to. But, why? There will be something else… like superhypoallergenic sunscreen… that I can better spend it on.

Tomorrow. I will start with the garden. Move on to the billing department, and finish by calling Boston, all before PT at 11:45.

No time for tears of frustration tomorrow. I am a Mommy on a mission.

Photo: LOVE THIS! <3

The Mommy Monster is BACK!

Published on July 14, 2012July 14, 2012 by beatingcowdensLeave a comment

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!

I really wish I had kept my broken genes to myself!

Published on July 13, 2012July 13, 2012 by beatingcowdens4 Comments

Apparently this has become like a sleeping pill to me. This is the place I go at night, to sort out all the emotions of the day before I can try to find some rest. I can’t imagine that will do anything to gather more readers, but it is certainly helping my sanity.

I am trying to find the balance, for both my daughter and myself. The balance between being properly scanned and “on top” of all our countless risks, while not letting doctors take over our lives. Because the truth is, they don’t know a whole heck of a lot about Cowden’s Syndrome. Most of them don’t care to find out, and the few that do, well – I will let you know. I think we have 3 between us that seem truly willing to learn.

So today I took Meghan to the vascular surgeon. The same doctor that has embolized the AVM in her knee 4 times. The same doctor who in February, right after the 4th procedure, handed me the name of a doctor in Boston. “We just drained 30 ccs of blood from under your daughter’s kneecap. I don’t know why it was there. You should go meet with this doctor and see what he has to say. He will likely want to put a scope under her kneecap after she has healed.”

After ascertaining it wasn’t an emergency, but not something we should sleep on, we met Dr. K in Boston over the April break. He examined her, without the CD images that I had pleaded with the NY doctor to send up 3 weeks PRIOR to our appointment. He said he wanted to keep an eye on it, and to repeat the MRI/MRA in 6 months.

So we did. And on Monday the PA who had been in the OR with the surgeon and my daughter 4 times tried to tell me there was nothing in her knee.

Today, armed with a 2 page report and the paper the surgeon gave me in February with the Boston doctor’s name on it, we went for our visit.

I am still confused by the number of inconsistencies that happened in one small room. The surgeon began by taking back his concern from February and telling me he just wanted the Boston doctor to get a baseline on Meghan “just in case.”

Which, I though to myself, I am sure is true because I definitely would have made a 5 hour drive 4 weeks after a double mastectomy if he was so nonchalant.

Then, he held to his story that there was nothing in her knee. Even as I pointed to an obvious bump he told me it was nothing. I questioned him on the report, the one that says there is a stable 2.8 x0.7cm mass. He told me he reviewed the CD and disagrees with the report. Even as I told him I found the report to be strikingly similar to the December report, he offered to sonogram the knee to confirm “nothing.” On sonogram he said there is a gathering of tissue (do I need to define mass?)

So, he said to bring her back in 6 months. They will reevaluate. Then we will repeat the MRI in a year.

Have I mentioned I cry when I am frustrated?

Well somewhere about 10 minutes into the conversation, when he was busy changing his story and disagreeing with the report I got overwhelmed. Shouldn’t have done it, but I cried. Fatal mistake. I now look like a complete ass, when that is his job. And he does it better than I ever could. He actually had the nerve to lecture me that I would make my daughter upset. I still can’t believe I took that. (Still stewing!) AND, I shot Meghan th evil eye to keep her quiet and remind her of her manners.

I HATE the crying thing. I have been working on it for years. UGH!

You know I wasn’t crying because i was sad. I actually was really relieved at the thought that no surgery was necessary. I was frustrated by arrogance, lack of clarity, and overall lack of concern for my daughter the whole person.

See, no one else knows the tears she sheds about this damned knee. The things she can not participate in, or the modifications she has to make just to avoid pain. She does them effortlessly. Every day. No one knows except me. And it kills me.

So when we were leaving I tried to find the bright side. I said, “See, at least you won’t need knee surgery this year.” To which my far too bright, soon to be 9 year old responded, “I am not sure. To me surgery makes it worse, and not having surgery means no one is going to do anything to make it better. Guess my knee is going to feel this awful forever!”

Now I could have tried to tell her that maybe it will be better by itself, but I respect her way too much, because as much as I would love to believe it – I don’t.

AVMs are difficult to deal with anyway. When you combine them with a PTEN mutation, they are ridiculous to control.

Just one aspect of a multifaceted disease.

I really wish I had kept my broken genes to myself.

Frustration…

Published on July 12, 2012July 12, 2012 by beatingcowdensLeave a comment

It felt like anger at first, but it isn’t. Sometimes even at my age I forget things I already knew about myself.

I cry when I am frustrated and overwhelmed.

I am not really angry. That takes up too much energy and I have none to spare. To be angry there has to be a target of your anger. And really, who or what am I going to be angry at? And what purpose would it serve?

Now frustrated is a different story. Frustrated is when the control freak can’t sit long enough to organize the pile on her desk.

Frustrated is the dead sod in the yard, and the cucumber and zucchini that seem to have developed a “creeping crud” fungal infection.

Frustrated is when old “life” problems, like credit and identity theft issues that were solved three years ago start taking up time, and there isn’t much to spare.

Frustrated is when you can’t get a doctor who takes your insurance (despite countless phone calls) to order the tests you need so you can stay well enough to be on top of the (not so bright) doctors who are treating your daughter.

Frustrated is trying to plan some FUN events when doctors appointments keep getting in the way.

Super frustrated is having to go to NYC to see the knee surgeon tomorrow, on a perfectly nice – I should be scheduling a play date for my kid- kind of day. Frustrated is being unsure how to get my point across without being escorted out by security, and/or without scaring my kid.

Frustrated is going to the appointment alone- when I really want my husband there, but knowing it is not the kind of appointment he should take off work for.

Frustrated is wanting so badly to let some of this worry go, and knowing I can’t.

Frustrated is a new medical issue, every time I turn my head.