December 2012 – Page 2 – beatingcowdens

Respect the Spleen

Published on December 9, 2012 by beatingcowdens3 Comments

I should be sleeping. It is 1:30 AM. This is my second post for the night, because I can’t stop and sort out the overflow in my head any other way.

Maybe you have been following the saga of my poor spleen… or not. Either way, my spleen has issues. Or, rather, my doctors have issues with my spleen.

The first time the hamartomas were detected on my spleen was probably when I had an abdominal ultrasound as a screening after my diagnosis. When I saw my oncologist in August, she wanted an MRI done of the spleen so she could have a basis for future comparison. When she called me with the results in August she was ready to send me for a surgical consult, based on the significant size of the 4 hamartomas (courtesy of Cowden’s Syndrome – aka PTEN Hamartoma Tumor Syndrome) on my spleen. Since the spleen itself is only about 11 cm long, the hamartomas across the top equaled or exceeded the length of the spleen. At the time, I was coming off of a double mastectomy in March, and a hysterectomy in May. She was forcing my hand to schedule a colonoscopy (which I did,) but I pleaded with her for 6 more months with my spleen. Reluctantly, she agreed.

So, when I had the car accident and I was sent for an abdominal ultrasound, that started the whole process over again. The oncologist looked at the report and ordered an MRI. I went for the MRI and tried to set up the surgical consult. The surgeon, who is a surgical oncologist, thinks the spleen needs to come out, but he wants me to see a different surgeon to see if it could possibly done through laproscopy first. But, he wants to talk to my oncologist before he will set up an appointment to even evaluate my case, and my oncologist spent last week in California at a conference.

So, instead of February… it is now December, and I am waiting. Waiting to have the fate of my spleen determined.

Well meaning people say to me, “Don’t worry – you can live without your spleen.”

Sometimes well meaning people should smile and nod more, and speak less.

Yes, I KNOW I can LIVE without my spleen. You can also LIVE without your boobs, your uterus, your cervix and your ovaries. You can LIVE without your gall bladder, and your appendix, and your thyroid, and one kidney, and part of your liver or lung too. But, just because you CAN do something, doesn’t mean you should.

I am thinking of asking for a fake fish for Christmas. One that will remind me I have been gutted like a fish this year. One that will also remind me that, no matter how many body parts they take, you have to KEEP SWIMMING!

Monday or Tuesday I will talk to a doctor about my spleen. I would love to keep it. I just think we have gotten along nicely for the last 39 years. And, its mine. But, I will listen to the doctors (after I ask them EVERY hard question I have,) and I will do what is best, and safest.

Heck, I didn’t go through all of this past year to be beaten by my spleen….

What’s in a name?

Published on December 9, 2012December 9, 2012 by beatingcowdensLeave a comment

It has definitely been a week, (ok – month…year) for reflection.

I started this blog in May of this year, after some encouragement from another Cowden’s sufferer. Once I realize how to do it, I was prompted to name the blog. I didn’t really give it much thought. I went with the first thing that popped into my head. And so, “beatingcowdens” was born.

The name seemed appropriate at the time, and I guess it still is. But because situations, and people are ever changing, I don’t think the name means the same thing to me as it did 7 months ago. Back then I had already had my double mastectomy, and I think I still was under the notion that if we got out in front of enough things we truly could “beat” Cowden’s Syndrome, the same way you “beat” a football team.

Well, I have come to realize to “beat” it would be to “defeat” it, and since I lack the power to change my genetic makeup, that simply can’t be. So now, I view it as a process. I spend each day, “beating” Cowden’s. Every time I get up. Every time I go to the doctor. Every time I fight to get better, and recover. Every time I explain to my daughter that it is all about HOPE and determination. This is all part of the process we call “beating” Cowden’s.

So really, what is in a name?

I guess it’s all about perspective – but then again, isn’t everything?

I had plenty of time to think about the whole “name” question today, as Felix, and Meghan and I took a trip to Bethlehem, Pennsylvania. We accompanied the Moravian Churches on a bus trip to tour Bethlehem, and to take in the Christmas Vespers at Central Moravian Church.

After a few hours in the bus, we got to tour the town. We walked up and down Main Street, enjoying the little shops, and a nice dinner. It was a welcome switch from the normal craziness of doctors, and illnesses, and therapy. It was better than filling out paperwork related to the car accident. It was, even through the chilly mist, a nice family day.

Although I must admit, as we gathered into the church for the service I still felt a bit odd. For so many years, and until so recently, I sharply defined myself as a Lutheran. Now, I was looking up at a Moravian star, marveling at the wonders God can work, and the sometimes unusual ways our prayers can be answered.

Personal issues with the Pastor at my home church left me unsettled and in many ways devastated earlier this year. So, I turned to God and asked for guidance as I looked for a new place to bring my family to worship. It was a long process, with lots of prayers, but some time in late August, I drove up Victory Blvd. I made a left and parked. I went into Castleton Hill Moravian Church on what I thought was a whim. I later thanked God for sending me the message I had been asking for. I brought my family the following week, and we have been attending faithfully as a family ever since.

So as I sat tonight in the Moravian Christmas Vespers service, I asked myself, “What’s in a name?”

I know a good deal of Lutheran theology, and I am learning the history of the Moravian church. There are countless similarities, and a few differences – all of which I like. Knowing that no place or person is perfect, and everyone has their shortcomings, I like the welcome feeling I get at each worship service.

So as we settled into the top row of the balcony of Central Moravian Church, I stopped and prayed. I asked God for peace from the constant turmoil that seems to surround our lives. And, as I sat there with my husband and my daughter a deep peace settled on my soul. Here in this almost 300 year old building, I found peace and comfort in the fact that my family was now enjoying church with me.

What’s in a name? Lutheran, Moravian…. I don’t think God cares. He looks for a heart that is right and focused.

I couldn’t get through a day, especially not sharing this diagnosis with my daughter, without the firm belief that we are being watched over.

Maybe it wasn’t a “Total Loss”

Published on December 2, 2012December 3, 2012 by beatingcowdens4 Comments

The Insurance Agent called Friday night. He told me my car was a “Total Loss.” I think I knew that after I saw this picture the first time, but it was still a little hard to hear.

Even though I understand the term “Total Loss” has specific connotations in the insurance world, the terminology wasn’t sitting quite right with me. To me, a “Total Loss” means I didn’t learn anything. It was a waste. I took nothing from it. That couldn’t be farther from the truth.

I have taken something away from every experience I have had in my life, especially the very trying ones that seem to be pelting me like hail on a blustery day. Sometimes what I take away is positive, and sometimes – not so much. But I always, always learn something.

1. No matter how long you stop, and no matter how hard you look, and no matter how sure you are that it is safe to go – a speeding car may hit you anyway.

2. If there are no witnesses to an accident – there is no way to “prove” excessive speed. This is the case no mater how many times your car spun around.

3. When you ride in an ambulance its less scary when you take someone you know. And, there are people kind enough to ride in the ambulance with you even though they hardly know you at all. There are real live angels among us!

4. When you are in an Emergency Room of a local hospital – burn your socks after walking on the floor, and don’t look too closely at the walls. Don’t expect the doctors to have any idea – or to really care what Cowden’s Syndrome is, and how it affects your body.

5. There are some really really nice insurance people, and some really obnoxious ones.

6. Many doctors do not accept “no fault” insurance, so finding one to check you out may be a challenge.

7. The pain is worse before it gets better.

8. The pain of being told you are more liable than the guy speeding through the school zone simply because th stop sign is on your side of the intersection may not be physical, but it hurts your pride. Especially when you know you handled it right. It is hard to get over hurt pride, but you can find peace with a clean conscience. So glad I have one.

9. It doesn’t matter much to anyone that the guy who hit you didn’t even try to stop, swerve, honk, or perform any evasive maneuver before plowing through you. It’s all about the stop sign.

10. Whiplash, and muscle spasms are real. Muscle relaxants are useless because they can’t be taken during the day when you have to be a full-time teacher and mom, but they help you sleep a bit at night.

11. When you stop and consider your accident scene, and you realize all the things that could have gone so much worse, you are reassured that the angels really do watch over us. (Thanks Angel Meghan… and all the others)

12. When you have Cowden’s Syndrome, and hamartomas on your spleen, they will send you for an abdominal sonogram right away, and then – like everyone else around here- be totally unsure what to do with the results.

13. Fax any important test results to a doctor you trust. I am grateful the spleen didn’t rupture, but for those of you on my team, cheering for it to stay – cheer louder please. The hamartomas are growing. I will talk to my doctor at NYU this week.

14. When you are really at your lowest point, hurt, aggravated, and discouraged – make a decision to DO something positive. After realizing a child could have been easily injured in this mess, I have established a petition for our local councilman to reevaluate the speed limit on the street where the accident occurred, and to label it a school zone, as well as to consider multiple two-way stops and speed bumps. I have reached out to the local “Improvement Society” who already reached out to DOT on my behalf. I have parents in my school fully supporting me and working to gain signatures on a petition. Their children’s lives are in danger every day. I want some things to change to make the children safer.

15. It is more fun shopping for a new car when you are ready to buy one, but my husband is helping make our current search more pleasant. Always marry someone with a sense of humor.

16. Wear your seat belt! Darn it if Cowden’s Syndrome isn’t going to kill me – a car accident won’t either. So glad I was buckled up.

17. Those silicone implants can take a good hit. Thankfully – nothing popped!

18. I am not going on the teacups at Disney World ever again. I have had enough spinning for a life time!

There… not a “Total Loss” at all…