Who wudda Thunk...5 years later

A very big milestone is upon me.

Five years Fonged!
You remember my term - the life saving liver surgery by the famous Dr. Fong?
Lots to catch up on - since 2010.
More to come

xoxox

How Dare I Feel Down

I've been off of chemo since mid-June.  I kept up with all the parties and family and running around. No afternoon napping for me.  Moved into Mom-mode in trying to organize Colleen and getting her ready for her big move to college.  Spent the last 4 weekends focused on Michaela and her softball practice and local weekend tournaments.  Survived last week's flood.  All in all, I've been "living normal"...doing all the regular stuff of life.  Small, day-to-day activities that were elusive this time last year. 

But....

I'm feeling really restless.  Incomplete. Lost.  I was close to breaking down and having a good cry fest today.  I actually planned on going to a chapel this afternoon to just be alone, unfindable, and see if I could make any sense of my current state of mind.

I'm feeling anxious and desperate.  I need to work again.  As in MONEY.  I'm scared. 

Then, I read on the colon cancer message board that I frequent, that one of "us" - a fighter/survivor, has taken a turn for the worse.  Colon cancer spread to her brain, nothing they can do, she has a  13-yo child.  Donna is such a beautiful spirit. She's probably pretty tired of fighting.

My CT scan is in 2 weeks.  Am I still cancer free?  My colonoscopy is in Spetember, will the "symptoms" I'm having now mean the  cancer is returned?  The thought of only being "free" for a short while is unerving.
How do people keep fighting and fighting when they get recurrences?

But....how dare I feel one bit sad or depressed.  Because today, I am cancer free, and here, and have every reason in the world to be happy.  Donna doesn't get that.

Chemo Is Officially Over....Now What?

After weekly chemo from April 2009 thru June 2010, I am done with chemo. I had a few breaks during that time due to infections, blockages, and other delightful set backs.


Then, as many of you know, I found my way to Sloan Kettering in March 2010 and had 8 tumors removed from my liver and one ablated. There is no protocol for post-resection chemo. Some believe that doing chemo when there is technically No Evidence of Disease, is stupid. Some people think some chemo is a bit of insurance.

I had 4 cycles post surgery and just had a break due to family and vacation etc. I went to chemo today, ready to do a few more rounds and I asked the Oncologist, OK, how many more cycles do you think?


Doctor basically said that doing "mop up chemo" is no guarantee that the cancer won't come back. If it's going to return, it won't be because I did or didn't do more chemo at this point. So, I said, let's end it.


Now, my CEA in June was 1.9 and today was 2.1. Still normal, but......?????

I'll do a CAT scan in 6 weeks amd blood work, then my first colonoscopy in September, since my diagnosis in March 2009.

So, now what? For 15 months, my life has been hospitals, surgeries, chemo, procedures blah blah blah.


I guess the mental/emotional battle begins. Re-establishing a life. Getting a job (hah, me and a gazillion other people) Learning to not live in fear and panic and anxiety of Cancer's Return.

Any Post Treatment Tips Welcome!!!!!

Still Trying To Decide Where To Put This Cancer

No exact end date for chemo, but I'm sooo ready to be done with it: the rash, the long sleeves and pants, the cracked skin and painful sores on feet.  So very very minor in the scheme of tings, but it gives me something to bitch about - a need I have.

Seems like some things have been put in my path the last few days to make me start thinking of the future, but still the subject is CANCER.

• At church yesterday, as I turn behind me to give The sign Of Peace, the young woman behind me is the counselor from Wellness House from the women's support group. Damn my chemo brain for forgeting her name - she remembers me.

• a Mom at Michaela's softball game and I were talking and she's seen me all draped, hooded, hats etc all precaustions against the sun I am so very sensitive to due to chemo.  We talk and she she shares that a friend of hers, mid 40's is also battling colon cancer.  I offer her my number to share with her friend - I will be of service in any way her friend may want to connect with me.  To find out that someone is fighting and survivng the exact disease is really important....there's sooo much sadness and grim statistics and death that surrounds this disease, anything remotely positive is appreciated.  I hope she calls me to connect and I hope I can be of service.

• there was another thing but i forgot it. damn chemo brain...oh yeah, my Wellness House Ladies are getting together Wed night.  Betty, the connector of the group, was missing on everyone and told us she'll be hanging out at a bar and waiting to see if any of us show up!!!!

Dear Katie

Thank You

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.

XOXOX

Peggy

 

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 informed....now, 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

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.

Faith

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.

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.

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?

Rejoice

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!!!

Sweet Home Chicago

Last day in NYC. Can't wait to get home. I've never been away for 3 weeks at a crack.

Saw Dr. Fong yesterday.  The pathology on the tumors they removed showed 80-90% necrosis - meaning dead tissue.  He wants me to do scans in 3 months then 6 months so he can review.  He also recommends 3 months of chemo starting in 3 weeks, to kill any micrscopic cancer cells that may still be lingering in the liver.

So those are my marching orders.  I think I can handle it!

And Now To Move Forward, One Step At A Time

We did it Prayer Warriors...We Did It!  Yippe Yahoo and Halleluejia!!!

One week post-surgery and I am now recouperating at Miracle House, with Lee, Katie, Julie and a weekend visit from the kids. (peaceful R&R???).  I feel like someone beat the snot out of me with a brick. I have one long  L-shaped scar on my torso, so as you can imagine, the scabby, tight sutures and soreness of the area limits mobility.  But, One step at a time, one stretch at a time, one lap at a time to return to strength and comfort.  Heck, I've been through enough surgeries this past year, I know the drill by now!

Kate & I took a stroll around the neighborhood today.  I alternated between wheelchair and walking and hoping Katie wasn't going to pull a "Whatever Happened To Baby Jane?" on me.  That's all I need is to be catapulted out of the wheelchair onto a dog-poop filled New York Sidewalk!!!

My oncologist, Dr. Lo, called me last night and was so happy to hear the news of my successful surgery.

I'll see Dr. Fong Monday for a follow-up and hopefully he will have the pathology on the removed tumors.

I asked the rounding Doctor the other day - "So, does this mean I'm Cancer Free - NED (No Evidence of Disease) and he said the best word ever..."Yes".

I will have a lot of mental and emotioal transitioning to do in addition to my physical rehab.  After a year of complete and utter Fear, Sadness, Pain, Confusion, I now need to "live" in a new way I suppose.

So my Prayer Warriors - Rejoice in the MIRACLE you created, I sure will.

XOXOX

Peggy

Something occurred to me yesterday. Throughout Peg's journey people have said the words, "I'm praying for her." The words have been said to me, my parents, and my brothers over and over.What struck me yesterday is how far and wide Peg has been prayed for. The trickle affect of knowing someone who needs to be prayed for and passing that on is truly AWESOME.Our sister-in-law, Ruth, told me that while praying for Peg yesterday she just wasn't sure she was being heard so she wanted to make certain and asked a few of her friends to join her and when they finished she knew she was heard. Ruth is in Virginia. Lee's parents called the night before and they had their church praying for Peg. They live in California. Peg has a friend, Peter, in New York praying for her and Kirsten in South Carolina. She has made new connections and reconnected with old friends in other countries and they prayed for her.Of course, we cannot leave out all the local prayer warriors as well, but I think you get my point.  

I did speak to Peggy this morning. She sounded pretty good and is very happy with the outcome. True to Peg's nature, she is already worrying about the future and the chance of  reoccurrence. I hope she can take some time to bask in the glory of this ongoing miracle for a while.

Katie


     

Post Surgery News

Peg is out of surgery and doing well. It was expected to last 3 1/2 to 4 hours but Dr. Fong was done in about 2 hours which of course had Lee and my folks scared when he came walking out that soon. It was all good news.Only 40% of Peg's liver had to be removed. There is one tumor remaining of the 8 or 9 that he could not remove because it is too close to blood vessels. He cauterized it or as Lee put it, "fried the shit out of it" to kill any remaining live cancer cells that might be there. It hasn't been determined if she will need further treatment..

That's all for now. The rush of relief I've been waiting for has just come in a flood of tears. Can't type and cry anymore.

Thank you everyone for all your continued prayers and good wishes,

Katie

Everybody Wang Chung Tonight, Peggy's Gettin' Fonged

Last post before I go under the knife. 

Lee & I took a walk along the Hudson River from 43rd Ave up to 60th/Columbus Circle and Central Park.  The sun was finally out in NYC so people were out in droves and lovin' the Big Apple.  Tremendous people watching.

My Mom & Dad arrived at the apartment about 3 PM and Lee took them to get Bus passes, food, and they are at dinner now. 

Me.  I am nursing that nasty Magensium Citrate - I used to chug beer, you think I could chug this crud??!!!
I'll pack my hopsital bag, take a super luxurious shower with Hibiclens - some de-germing stuff the hospital wants me to use, then try and not think about FOOD.

Good Night My lovely wonderful Warriors.  It's almost embarassing the abundant, over-flowing love and prayers that are on steroids right now for me.  I thank you all, and am forever greatful for your unending faithful prayer

XOXO

Peggy

Live In New York, It's........

Lee & I made it safely to NYC Satruday.  Rained cats & dogs Saturday, most of Sunday and now just drizzly.  I'm blogging from the waiting room of SLoan Kettering Outpatient Center, waiting to do pre-op Testing:  EKG, blood draws, Chest X-Ray.  IT'll be a long wait as the waiting room is packed.  A year of chemo treatments and multiple ER visits and surgeries, I know the waiting game.

Today is the last day I can eat food, so as soon as I'm sprung this afternoon, I need to be a locust and eat my way through NYC for the next few hours.

Lee snapped a picture of Me and Dr. Fong at my pre-op visit today, I'll try and post it tonight.  He thinks this willl be a successful surgery - meaning he can get all the tumors....there's something about him that is so peaceful, yet authoritative and confident.  He can be talking Valkan and you'd beleive him!  It's comforting.

Thankk God for Lee, he has the NYC Bus system pretty much down.  I told him "Thank God you're here to navigate so I only halfpay attention"  which is about all I'm capable of right now in my spazzy pre-op state of mind.

No NY moments, except the dead umbrellas.  AFter the major storm on Satruday, all you see on the sidewalks are abandoned umbrellas, turned inside out and destroyed becasue it was soooo windy Satruday.  I'll try and snap a picutre.

Oh and ther was a guy on the bus this morning with the nastiest breath ever, it envolped me like a cloud of nastiness, and I just tried to breath into Lee's neck for a whiff of cologne, anything to disband the halitosis.

XOXOXOX

Peggy

See Ya In New York - I'm Gettin' FONGED!!!!

Why am I blogging when I should be writing lists and mailing bills and packing for New York?  well, because I have diarreah of the mouth and mind and would much rather commuicate than work!!!!

Katie will post updates post-surgery, I'll take over when I stop drooling and hitting the morphine pump.

Do you think Dr. Fong would mind that I just made a verb out of his name?

Fong; Fonging; Fonged - to perform life-saving oncological surgery on dieseased organs; to scoop out nasty-ass tumors...feel free to add your ownd definitions!

XOXOXOXO

Abundant Blessings

Two days before take off.  So much on my mind.

Blessing #525,600
Last Saturday, my school friends and their spouses gathered at Julianna and Brian's home for what has become a wonderful habit of get-togethers.  As I've blogged about in the past, this group of grade school/high school friends gathered around me last Spring and have been by my side ever since. So it took cancer to get us all back in the habit of spending time with each other, who cares.  That's not what's important, I don't have to tell you that.

It's that beauty of reconnecting with people you are so fond of.  It's the ability to fall back into comfortable, easy, I-knew-you-when realtaionships.  It's also wonderful knowing these friends as the women they've become.  We all have this abudance of life experience under our wings now and to be able to appreciate these women on a different level, applaud all their accomplishements, be empathetic to their struggles is a beautiful thing.  And a shout-out to the Spouses who so patiently step aside, let us cackle and laugh and manage 6 conversations at once, they get it, and we love them all the more for it!

Blessing #525,601
Tuesday Night was a gathering of new friends - the Women from the Wellness House Support Group.  Betty hosted dinner at her home and a beautiful evening of Cancer Warriors circled around me for my send-off to Hope.  I'm crying now as I type, so I think I'll stop now.  Here's a picture of these fierce, gorgeous cancer survivors...I love you all!!!