Sunday, May 19, 2013

6 months ago...

November 19th, 2012 was a day that I'll never forget.  I can not believe it was 6 months ago.  It seems like much longer.  I remember many vivid moments of that day which all bring chills down my spine and tears to my eyes.

I really can't believe it's been half of a year.  So much as changed.  Life has been challenging.  Every aspect of my life has been challenging and has changed.  I like to think that those changes have all been for the better.  Well, maybe except for the whole removing part of my colon part, but then again that was something that needed to be done to get rid of the cancer so I suppose that was for the better too.

I now have a 5 inch scar down my abdomen along with 2 other tiny scars.  Those are the only phyiscal signs that I've been through this nightmare.  Unfortunately, if I could see my thoughts/mind/brain there would be a lot more scars there.  Even though days are getting "easier" I still wonder about my health and how long I'll have it.  I am still overwhelmed by having TWO different cancers, one of which is so very rare and difficult to cure. I think "why me" all of the time.  Why did this happen to me?  I really do have everything I ever dreamed of and more really. But I also know "why not me".  Cancer doesn't care, it just wants to destroy so why not me?  At th same time I am starting to feel more confident that I will be around for a very long time, even if that means having the cancer come back and me having to endure the cytoreduction and HIPEC surgery.  So I also think "why not me"?  Why wouldn't I be one of the ones to overcome this?  I am young, strong, stubborn healthy otherwise and very adamant about being here so why not let it be me to beat this thing.

I am workiing on the acceptance part of grieving.  I am trying to completely accept that this diagnosis can never be undone.  I still wish it had never happened and I'd like to get to a place where I think, "yes it happened, yes I'm ok and yes I'm going to be ok no matter what happens".  I'm still a ways a way from that but I am working on it.

I'm trying to blog more often, but some nights I just don't know what to write.  (ironically, I had this whole blog planned out and then I realized it was the 6 month anniversary of my diagnosis so I'll have to write that one out later)  I am so thankful for anyone who has read this blog and prayed for me.  I can't begin to describe how humbled I am or how much it has helped me to know there are many people who care.  It has made me feel less alone.  In fact, when looking at the viewing history.... there have been 5082 blog views.  And not just from the USA but many countries including, Germany, Canada, Romania, Columbia, Ukraine, Australia, United Kingdom, Macedonia, Greece, Poland and a handful of others.  Again, thank-you.

If there are breaks in the blog posts, please check back in.  Especially in October when I'll be having my next scans.  I'll need lots and lots of prayers.

Sunday, May 12, 2013

Mother's Day

Happy Mother's Day to all of the mommies out there, especially my mom, Rea. You are very loved and appreciated. Thank-you for all you have done and still do!!

This weekend has been sort of yucky because I have not been feeling well. Thankfully I feel certain it is not cancer related. Unfortunately, I'm pretty sure I had one of those nasty stomach bugs. You know, fever, chills and GI troubles :( Friday was my only really bad day. I felt much better Saturday with just a little underlying nausea continuing still.

I was still able to enjoy Mother's Day weekend. Sean was Mr. mom and pretty much did everything.

Tomorrow is 6 months since my first surgery. It's amazing to think that 6 months ago I had no clue that I had cancer. It seems like it was much longer ago.

Thursday, May 9, 2013

Best day

I strongly recommend taking a vacation day and pulling your kid or kids out of school to spend some serious quality time together.  Today Ava and I played hookie.  There's part of my day I have to keep a surprise because it is part of our Father's Day presents, but we had a fun lunch today, we painted pottery in Hyde Park, she was treated to frozen yogurt with rainbow sprinkles and then we ran around a bit and headed home.  She was on cloud nine. She kept giggling, telling me how much she loves me and constantly had a smile on her face.
I'm excited to tell you about the surprise. (No I am not pregnant :)

I also spoke with Dr. loggie's nurse practioner this afternoon. He is another Doctor that only specializes in peritoneal malignancies. She and I went over my specifics and talked for a bit.  I need to send her my stuff, but she sounded similar to Dr. Bartlett. An MRI at my one year anniversary and a laparoscopic surgery "looksie" to see if there's any disease progression. They do not believe in operating unless there is clearly disease and they feel like one year post diagnosis would show if something was there.  If something is seen, then the big ole surgery would be scheduled and if nothing is seen then MRI's every 6-12 months indefinitely. I need to start with sending them my stuff, then I'll probably pay them a visit in Omaha, Nebraska and then I will have my choice of which specialist to follow me.

Sunday, May 5, 2013

Just trying to process everything

What I want to do is lay everything out on paper (or the blog) so I can clearly articulate everything from the last week. However, my head is spinning a bit.  I need to make some pro and con lists and lists of what is agreed upon with the multiple specialist and what is different. It will all have to wait until I feel up to it.
In a gist I have Dr. Hodul from Moffitt telling me to go live my life and monitor closely, Dr. Sugarbaker telling me to be monitored closely, Dr. Bartlett teling me to be monitored closely, Dr. Sardi telling me he would at least do a lap if not go for the curative HIPEC and I spoke with a GYN oncologist out in California ( he is a cousin of a family friend) and after telling him my situation he unofficially recommended HIPEC.  It is SO tricky because on scans and through blood work I have no signs of disease HOWEVER when I was opened up in December Dr. Hodul did see 1-2 mm deposits of mucin in my pelvis and on my mesentery which is technically signs of disease, even though it was acellular.  The chance of the disease progressing is very high, even though it could take years, it is highly likely to progresss HOWEVER it isn't guaranteed that it will for sure progress, meaning it may never change. I am healthy, I eat super clean.... as close to an anti cancer diet as possible and I exercise, don't smoke, etc.  BUT how do I choose.... it would be MUCH easier to get everything before the disease progressed so the aggressive thing to do is surgery now.  BUT I only have one dr officially telling me this is what I should do.  I'm trying to figure out if I can live and wait. I just wish I had a crystal ball and could see what I should do.  I am so young.  32.  I have a 2 year old and a 5 year old.  I have a husband and family and friends that want me around for a while and I want to live to be a really old lady!! All the doctors gave me an excellent progosis; even with waiting and watching.  Sometimes (rarely) it is nice and easy to pretend that I'm all good.  But most of the time, somewhere in my mind I am wondering if I'm ok.

Friday, May 3, 2013

Never easy

Today's appointment was very different than yesterday's appointment. Boo. I have a big decision to make. I plan on writing it all out once I get home and am not typing on my phone. Please pray that I make the best decision. Luckily I have a little time to make it.

Thursday, May 2, 2013

Things are looking up

Appointment with Dr Bartlett went very well:) he gave me a very good prognosis and does not recommend surgery now. More details to come