Sunday, May 27, 2012

An Honest Admission

I'm overweight.

There. I said it.

I remember when I had my colon surgery and emerged 55 lbs lighter and swore to myself I would never allow myself to get that big again.

Well I haven't allowed that. But I'm only 5 lbs away.

The day that I wake up and step on that scale and am 100% back to my post-surgery weight will be a very dark and depressing day. I've been thinking about all of this for months, wondering why I have such a bad relationship with food. I was never an "over-eater" before the surgery... I was overweight then because I unknowingly had cancer. But now, while I primarily eat healthy foods, I really do overeat.

And that is always my crutch... I always tell myself "I eat healthy foods". I eat very little meat, I don't keep junk food in the house, I eat fruit and smoothies and quinoa and legumes. I don't constantly stuff my face with pizza and burgers, though I will admit I don't stay away from them either. I eat healthy foods.

But that doesn't mean I eat healthy.

Eating too much of something healthy makes it no longer healthy. I'm probably easily consuming twice the amount of calories as I should be. And even though I eat healthy when I'm home, I'm not always home. If I'm out I tend to do the most convenient thing... frequenting the nearest drive thru.

After my surgery and my weightloss I felt like I had been unleashed. I had been so limited in my diet for years because of the pain caused by what we now know was the tumor and as soon as it was out of my body all I wanted to do was eat as much as I wanted and anything I wanted. I think emotionally I feel like if I can no longer eat what I want then I must be sick again. I also think that I'm so overwhelmed by the multitudes of health issues I have to watch and treat etc that the last thing I want to do is have to be concerned with my diet. So I eat whatever is easiest. And I eat whenever I feel the least bit hungry.

This past week I have been trying to start a diet. I hate that word. It suggests something temporary and these eating habits need to be anything but temporary. This needs to be a full on lifestyle change. But it certainly isn't easy. And really I don't understand why. Why is it so difficult to say "No, I don't want to go out to eat." Or, "No Reagan, you don't need to eat that french fry. Have some veggies instead." Why is it so difficult to get away from processed foods? So frustrating.

Then there is this whole exercise thing. Again, why is so hard to make myself do this?? I can plan my exercise and weekly menu while sitting comfortably on my sofa, but when it comes to implementing any of it you can forget it.

Does that make me lazy? I guess it might. I am tired most of the time. By 5pm I am spent. I usually can't even imagine doing anything that doesn't involve a pillow and a remote. But that sure is a sad way to live.

I want to do more. And I want to feel like doing more. That is a big reason why I want to lose weight. I know it will make me feel better. I need that extra energy it will give me.

But I need some accountability. I'm horrible at holding myself accountable (something else I need to work on). Anyone want to be responsible for holding me accountable???

*As a side note, my husband is about to join the military. He will be going to boot camp and coming home in awesome shape. I would LOVE to show up to his graduation 30 lbs lighter in a sexy hott dress. So I'm going to try to use that as my motivation! :)

Thursday, May 24, 2012

Sometimes I Hate My Genes

I haven't posted here in awhile because I've been trying to get my thoughts together. This is a long story and I believe it would be best told beginning with some background.

When I was diagnosed with colon cancer I was sent to see a geneticist once I arrived at Johns Hopkins. He looked over my family history of cancer and told me he believed I had something called Lynch Syndrome. Basically Lynch Syndrome is a deletion of one of your DNA mismatch repair genes. Essentially when your DNA is replicating and it makes a mistake your mismatch repair genes correct those mistakes. When you are missing one of those genes it is harder to repair the mistakes made during replication. Those mistakes begin "piling- up" and eventually lead to the development of cancer. Typically with Lynch Syndrome colon cancer is the most common, followed by endometrial cancer, though there are many cancers that can arise.

Since my cancer diagnosis was in 2008, one year before the genetic in-discrimination act was put in place, I was hesitant to undergo genetic testing for Lynch Syndrome. We decided that it was obvious I had Lynch so I could put off my testing if I proceeded with treatment like I had it. I had a more drastic surgery to prevent future cancer and I get screened annually, if not more often than that. They did however do two tests on my tumor: a microsatellite instability test and immunohistochemistry for MLH1, MSH2, MSH6, and PMS2. Normal results would show up as microsatellite low and all four proteins expressed. My test results were microsatellite high and proteins MLH1 and PMS2 were not expressed. So I had abnormal results. When MLH1 and PMS2 are missing in the immunohistochemical testing then they test MLH1 for hypermethylation. If this test is negative, as mine was, then they suspect that MLH1 is deleted aka. you have Lynch Syndrome. The nest step is blood testing, which is the part I put off.

Until last month.

I think part of me put it off because I was worried it would be negative. Sounds weird huh? Well, when over 14 members of your family have had colon cancer and you were diagnosed at 22, you want answers. I wanted to know the reason. While having a genetic disorder is not something exciting, it is an answer. There is a lot of research that has been done and there are screening methods you can follow and your family members can get tested. It offers hope because you know longer have to wonder why your family has so much cancer.

My genetic test results came back on May 14th. I was negative for a MLH1 deletion. *Sigh*

They are testing me for a PMS2 deletion but for several reasons we expect that to be negative too. So what does this mean? They still believe I have Lynch Syndrome. Basically there are two scenarios: 1. I have a MLH1 mutation that is just not able to be detected with current testing, or 2. I have a deletion in another gene that hasn't been discovered yet that regulates the MLH1 and PMS2 genes. So essentially we are left with no answers.

But the most frustrating part is that now none of my family members can get tested for Lynch. That was the one light at the end of the tunnel for all of this. The idea that now my family could know if they are at risk for these cancers so that they can get proper screening and catch it early. Most people won't screen unless they KNOW they have it. And now they can't know. So frustrated.

But now, in a positive light, maybe this is why I am going into cancer research. Maybe I can figure it out one day. Maybe. I hope somebody does. I wonder how many other families out there have had similar genetic testing results? I was told that less than 10% of Lynch families have an "unknown" gene. I'm itching to do a study on this... if only I already had my PhD :( 4-5 more years of waiting... but I guess when my family has been waiting over 100 years, 4-5 seems pretty short.

Anyone else had frustrations with genetic testing?

Tuesday, May 8, 2012

New Naturopathic Goals

On Monday my mom and I drove to Slidell, LA to see a new doctor. *Sigh*. MORE doctors. I was less than happy at first because I have SO many doctors already, but as the appointment drew near I became more and more excited about talking with him. He just opened his practice a month ago... he is only open two days a week and the remaining days of the week he is an emergency room physician. His new practice focuses on treating medical conditions in natural ways, if possible. This was just exciting to me... an M.D. who is open to NOT immediately prescribing a pill for something! Refreshing.

After meeting him, I am smitten. What an awesome doctor! He spent a lot of time with me discussing my issues, my ideas, and possible tests and treatments. He even listened to my theory that many of my issues are resulting from my gut hormones being out of whack since removing my colon (did you know that the colon is also an endocrine organ and produces hormones?? Who knew?! I certainly didn't until recently and have been researching it ever since). He even thought it was a plausible theory... if nothing else it made me feel good cause no one else wanted to even discuss it with me :) He is very motivated to try and get my Endometriosis and Pancreatitis under control. There are a myriad of tests he wants to do and unfortunately they are expensive, and he doesn't take insurance. Bummer :( But I plan to do them as soon as I can. Until then, he has given me some things to look into and think about.

So here are some of the things we need to figure out and fix:
-Low Progesterone and Cortisol (consequent Endometriosis)
-Low Vitamin D
-Possible hidden food allergies
-Possible hypothyroidism
-Possible adrenal fatigue
-Possible low digestive enzymes (possible reason for Pancreatitis)
-Low Vitamin B12

Plan for DOMINATION :)
-Switch to oral progesterone
-Take bio-identical cortisol twice a day
-Take 10,000 iu of Vitamin D a day
-Take a minimum of 10,000 units of Vitamin C a day
-Continue with Vit B12 shots once a week
-Take a comprehensive Vit B supplement
-After testing, get on a natural Thyroid medication
-Take 200-600 mcg of Chromium a day
-50 mg of Curcumin a day
-Take Melatonin for the insomnia
-Test my gut hormones and try to balance them based on results
-Test vitamin, mineral, and amino acid levels and supplement where needed

Whew! For those of you that know me you know I really can't swallow pills (I know I know, I'm 25 I should be able to swallow pills) so this will be a huge challenge for me. But I don't even care because I am so excited to be told what I need to take to balance my health!!! Now, I just need to make sure I am diligent and do everything I need to do :-/ I'm one of these people that am good at giving advice but bad at taking it. I've also learned that after a total colectomy you absorb more sodium and secrete more potassium. This makes a lot of sense because I am always SO BLOATED! and my potassium levels are always low when they get tested. So I'm going to be trying to cut sodium out of my diet and add extra bananas :) Another challenge because like most Americans I love my salt... especially salty french fries! But they need to be cut out anyway.

Anyone have any diet tips after colectomy?? Or tips for how to stick to a diet? I can use all the help I can get!!!
"Life's journey is not to arrive at the grave safely in a well preserved body, but rather to skid in sideways, totally worn out, shouting..... 'WHAT A RIDE!'"