Thursday, April 29, 2010

Time To Re-Focus and Lay Out the Gratitude List

I've been in a funk since my surgery. I'm cranky, I'm still fatigued and healing, I'm emotional and just plain lost.

As I was showering this morning, it hit me like a brick - One year ago, I needed Lee to help me take a shower: He wrapped my emaciated body in saran wrap to protect the ostomy bag; He installed a hand-held shower wand so I could sit on the shower chair since I was too weak to stand for very long.

I took a look back at a post I wrote in May and I listed things I Missed:

  • Food on My Terms
  • The way food USED to taste.
  • Wiping My Ass
  • My "Before" Clothes
  • Wearing MakeUp/Clear Skin
  • Stamina
  • Q-Tip Satisfaction: I no longer produce ear wax, no need to Q-tip. Freaky, I know.
  • Fitting into my Bras- I used to somewhat dislike my large Marges, now I miss them 
  • Diet Pepsi: The bubbly, crisp, sweet drink in the middle of the work day. I drank maybe 3 per week, not a soda-aholic by any means. Any carbonated drink tastes like acid.
  • Ketchup: How can I eat my diet of hamburgers without it? i need a condiment, damn it. The acidity of the tomato is not a pretty thing for my tongue, throat, tummy. On the same vein, I miss MY homemade Spaghetti Sauce.(gravy, for my Italian friends). My red sauce was soooo my comfort food.
Except for 1-2 items listed, I either have all those things back, or almost back.

  • The simple act of taking a shower, unassisted is so much more satisfying now.
  • I don't need to go into detail about how grateful I am to NOT have an ostomy bag, I gave you all much too much detail last year!
  • Picking up Michaela from school
  • Eating together as a family

The little things that were unavailable to me one year ago are now an abundant blessing one year later.




Monday, April 26, 2010

To Blog or Not To Blog - That Is The Question

I'm in this very strange place - one month ago, I had a surgery that was not an option for me, until a series of miracles made it an option for me.  While I am technically "cancer-free", said with fingers crossed, I am still in treatment for the next 3 months or so in the hopes that some more toxic chemicals will nuke any microscopic cancer cells.  So many conflicting emotions on this- will this additional chemo make any cancer in my body more resistent to the chemo?  Will this chemo effect me in other ways yet to be discovered?

I'm also having flashbacks of what was happening to me a year ago - a year ago  I was just one month post-surgery from the colon resection.  A year ago I was trying to get emotionally and physically get used to having an ileostomy.  A year ago was so very sad, so very scary. Every day I'd wake up and then be shocked into the realization - I have cancer.

So now that I am in a very different place than a year ago, do I keep on blogging?  Last year, from March through November, there was a constant stream of hospitilizations, surgeries, treatment issues, setbacks and bouncebacks to keep all my friends and family, hopefully, I can quietly continue my chemo, have scans and pray for continued remission.

I expect most of my challenges from now on will be mental/emotional ones - figuring out how to recreate some kind of positive life for me and my family - what do I do?  Where's the right place for me to give back? Work- do I even try to get back in the game?  What are my options?
I'm sure for anyone in "remission" the mental part is a tough phase - you go from almost dead to alive - from hopeless to full of hope. I feel like there's an expectation of me to "live BIG", to be a walking advertisement of life after cancer, reverence to the miracle etc....yet I "know" that my surgery, while a wonderful thing. does NOT take me completely out of the woods. I have a 60% chance of recurrence. My surgeon told me not to thank him for Five years, that oh-so important cancer statistic.
what do I do? how do put it all in it's proper place?  I guess I'll keep praying and hope it's not too much to ask

Thursday, April 15, 2010

Return to The Dark Side - Chemo Begins Monday

I start chemo on Monday. Same drugs, same schedule- one week = long infusion of full coctail, the next week, short infusion of Erbatux.  Scan in three months.  The one drug - Ironotecean, has some toxicity to liver, so Dr. Lo said she will maintain very low threshholds and numbers on bloodwork, to make sure not an issue.  If so, that drug will be taken off the list.

So, halting of hair growth - it's the typical curly chemo hair.
Back to the nasty rash on my face- it's been nice having clear skin the past few weeks.  I went to NY with a horrible rash and it cleared up about three weeks later.
Back to being hooked up to a pack full of chemo to lug around for 2 days.

I have mixed emotions at this moment - I am sure that I want to do this "insurance" chemo, in the hopes that any lurking cancer cells will be nuked.  But I am ready to be DONE with it all.  I don't want to be around sick, dying people.  I don't want to be in the Cancer Hospital every day feeling sad for those who may not have it as good as I do right now.

I'm not sure where I fit in right now.  It's wierd.  I don't like it.

Friday, April 9, 2010


I need me some of this to get through a different hurdle in my lane.

Hebrew 11:1 Faith is the substance of things hoped for, the evidence of things not seen.

Thursday, April 8, 2010

Riddle Me This: NO Standard of Care post Liver Resection?

So, my Onc calls me back - I left her a message about re-starting chemo as per Dr. Fong, who did my liver resection a few weeks ago. He suggested 3-6 months, same chemo as I was on.

Onc states (once again) that I have her stumped - that there is NO STANDARD OF CARE after a liver resection. Can that be true??? the oncology field has not a recommended treatment plan after a successful liver resection? 

One person at the American Cancer Society Message Board replied rather strongly:  "WHY would you continue to put toxic chemicals in your body as "insurance" if there is no indication that any cancer cells remain per current means of detection?"

She reached out to a few of her mentors, one says No treatment and another says to do a different coctail of drugs than what I was on.

I am agahst. I asked her - "so Doc, have you not ever had a patient like me? Stage 4, still alive, liver resection?" And she said "No".

At this point, no mets were detected anywhere but liver. Onc & I agree that I want to do chemo as some "insurance" against the microspcopic cells lurking aound. She will reach out for more opinions.

I find this distrubing and odd.

Wednesday, April 7, 2010

Question Of The Day

This is what kept me up in the middle of the night:

I was given a gift, a huge, ginormous, monumental gift, am I allowed to pray for more? What are my expectations to be?  Since I am a recipient of a "biggie" do I dare ask God for more?  Like, "Dear God, please let things work out good for Colleen for college - choice, loans,financing, etc".

Is that selfish?

Sunday, April 4, 2010


If Easter 2010 isn't a season for rejoicing, I don't know what is.  One year ago today, I was about 2 weeks post-op from my cancer surgery, ileostomy placement and still reeling from the cancer diagnosis.  I think the girls went over to my Mom's for Easter Dinner and Lee stayed back and watched me drool.

What a difference a year makes.

My Mom said yesterday "How do I even begin to thank God for what he's done for you?"  That's the $64,000 question.

For today, I praise all of you for your relentless, dedicated prayer and support.

Here's a picture of Dr. Fong, the Monday before my surgery

This is the Day the Lord Hs Made, let Us rejoice and Be Glad!!!