Saturday, August 29, 2009

I'm Sad Today

My hair is really really thinning now. You can see my scalp. I'm so sad. I didn't think I'd mind losing my hair as long as it's in the pursuit of Life. Well, I take it back, I DO mind. It's a visual, outward reminder of my Cancer.

I HATE YOU CANCER, from the bottom of my heart and soul I HATE YOU

Friday, August 28, 2009

Delay on New Porta-Cath

Dr. Lo put me on a new antibiotic to attack the infection from my original porta-cath that I had taken out on Tuesday. The site is still really tender and sore and of course there's a big gaping opening that I have to irrigate and pack everyday. So, I'm waiting for a reschedule to put my new port in. So after this port is removed some day after Chemo, I will have "eyebrow" scars on each side of my upper chest. If I can get my deflated boobs lifted, I'd really have a wierd face on my torso!

That reminds me, I better take pain meds now before I attempt re-packing.

Nothing else to report or bitch or moan about, except needing to attack insurance company, hospital bills etc!!!!

Have a great weekend My God Squad And Angels!!!!!

Wednesday, August 26, 2009

Like Rosanne, Rosanna-Danna Said "It's Always something"!

Spent 6 hours at my 2nd Home- Loyola Hospital. ended up getting my porta-catheter removed. I will have to pack the open incision every day so it heals from inside to outside- just like my midline incision for origianl surgery.

Friday I will get a new porta-cath inserted on my left side- gotta keep the Chemo going.

What a Week!

Tuesday, August 25, 2009

Dang, Can I get a Break Please?

Now there IS an infection in my portable catheter. It started heating up yesterday- you can feel a mushy bubble over the catheter- like it needs to be drained.

I really don't want to spend another damn day in the hospital..I left a message for the Nurse in Oncology to advise.


Monday, August 24, 2009

Monday Update

A slight change of plans. I am planning on NOT getting the ileostomy reversal next week.
The medicine I've been on since getting out of the Hospital are kicking in and slowing the plumbing down. This is a good thing. The primary reason Dr Shoup wants to do the reversal is getting my plumbing back in tact to slow down output. If in fact it all slows down and I have no diarrhea, then my nutrition and weight gain should kick in. HOWEVER, one of the biggest adjustments to getting colon and bowels re-hooked is a constant diarrhea. So much so that Depends is a must, and you are a slave to the bathroom all day. For the lucky ones - 40%? the adjustment is 2-4 months. For the majority, it is 9 months to beyond a year.

That possibility of me being in the majority defeats the purpose of reversal. IF I continue to have high output, at least it's in my "pouch", doesn't cause me pain and I can retain my current quality of life. Now, my digestive track is short, so things move quickly anyway with this ileostomy, but I'm of the mindset to put this off until after chemo and any surgeries, so I can deal with the side effects singulalry, instead of in the midst of chemo etc.

Radiation Therapy - Talking with my oncologist, she wasn't sure why an appt was set up with radiologist, as it's not for SURE they would radiate me. I'm assuming it's just a meet & greet and consultation. I have tons of concerns on radiation - collateral damage to nearby organs, brittle bone syndrome, etc... Update: I just spoke with the surgeon, and she's fine with me waiting on reversal. She thinks when I get liver resection, she'll reverse it then. Also, she told me that Radiation isn't what her and the Radiologist want to do. Dr. Lo, my oncologist is the one that is Pro-radiation, to boost the chance of non-recourrence in my rectum/colon. Dr. Shoup, the surgeon says that there is no data that clearly shows preventative radiation prevents reocurrence. I'll consult with Dr. Benson in Sept on these items.

Liver resection - while it's still great news that surgery is a possibility, the oncologist stressed that because there are tumors on both lobes, it would probably be surgery on one of the lobes, with other therapies for the other lobes. Again, can't cut up all lobes of liver or I'd have no liver.

So that's all I know for now.

My current issue is to get my portacath site in line- the rash is slowly going away but the soreness and pain upon touch is not in the slightest. Wednesday they will see if nurse can access port, if so, I get the full chemo, otherwise, probably just the Erbatux again. Who'd ever believe they WANT to get back to chemo?? It's an odd world we Cancer folks live in, but there it is.

Blessings to all my revered praying angels



Saturday, August 22, 2009

Julie & Julia- the Move: Someone with NO tastebuds should NOT watch this movie

It was a lovely movie. Made me want to go out and make all of Julia Child's Recipies. I was salivating at all the food. Too bad I can't taste a thing. Really a dumb move. But I also love watching Food Network.

I have lots of food to look forward to when chemo is over some day!

Friday, August 21, 2009

God is Great, GOd is Good, Let Us Thank Him for This News!!!

Got a call from Dr. Shoup, my surgeon yesterday to call her back this morning. Part of me was dreading possible "bad news".

Here's the News:

there was a conference held at Loyola with all the Gastro Intestinal staff- surgeons, oncologists etc... and they discussed my case and determined:

1. Reverse My Ileostomy (bye bye poo pouch) I have so much output that it keeps me from gaining weight and I get dehydrated. I dread the post-reversal Depends moments, but hey, whatever helps the cause. The surgeon has an opeing a week from Monday. 2 days in the hospital.

2. My Liver is Resectable!!! - The Doctors took a further look at my recent Cat Scans and said some of the tumors CAN be surgically removed because they've shrunk enough! Remember, I had 2 very large masses on my liver, then once they shrunk, other tumors were revealed on all 3 lobes of my liver, making it impossible to do surgery.

I am stunned at the good news but oh so Grateful!

I have to thank all you warriors who have been in this fight with me from the very beginning- I know what answered prayer is, many times over, but this is a BIGGIE!!

Keep on praying my Angels- the power of your prayers is WORKING



Thursday, August 20, 2009

Just Another Day in Paradise

My current challenge: I have a really high output into my ileostomy bag. I drink 8 ozs and 6 oz comes out almost immediately. Since I was in the hospital, they were tracking this very closely. I was outputting 1000 ccs by noon, when acceptable range is 1500 per day.

thus, the dehydration and weight challenges. They tried a mix of Lomodil and Opium tincture 2 days in the hospital to slow it down. Didn't work. They upped the Opium dosage when I got home and KNOCK ON WOOD - it "seems" to be slowing it down.

What I pray for, is that the drugs work, because next step would be an IV feeding tube. I can't go there folks. Failure not an option. The Gastro Intestinal Cancer team is meeting today and will discuss my case to come up with plan. They need me stable and strong to keep on with chemo then Radiation.

Radiation- the word just scares me. The Breast Cancer ladies say it's a cake-walk compared to chemo and it's side effects. However, won't be the case for me, due to location. I mean, come on, I'm gonna get poison lasered up my Butt. Sores, fistulas, rashes, pain in the rectal area is different than your arm or armpit, you can still sit and lay down and walk with a scabby armpit.

I have to try and not get worked up about it. Lee keeps saying that this is the price to pay to get healed from the cancer. And that's the goal.

Another bump in the road- I got a rash all around my porta-cath- the exact size of the bandage covering. I can't get the 3 primary chemo drugs in my arm, only via port. So please lift a prayer that this rash heals and DOESN'T turn into an infection, I need to get back on full chemo cycles.

Other than that, just another day in Cancer Paradise!


Tuesday, August 18, 2009

Public Service Announcement: Take care of your Gastro Intestinal Health OR you will have to get a Barium Enema

Yipppe Skippy, I'm finally out of the Hospital. I will give particular updates in another post, but this is my PSA to tell all readers to take care of your BUTT. If you dare to read on and aren't too offended by my candor, I hope my tale will inspire you to take care of all things leading to your Hineys!

OK, so I have this pain in the ass, constant, miserable, blah, blah, blah. The Dr. wants to perform a Barium Enema so they can get better pix on the nether region to see if I have any blockages or fistulas. I had no idea what to expect.

I have to lay down on a table that is an x-ray machine. I'm in a flimsy hospital gown, I'm skeleton skinny and every bone was digging into the table. Ah, comfortable!
So I ask the Devil Incarnate(enema giver) what to expect:

" Well, we insert this probe (think a straw with a thick eraser on top), 7 cm up the butt, then inflate a balloon in the rectum so the probe stays and we can get pictures. It will be "uncomfortable". I should have known I was doomed.

I was very anxious and started crying, I was just sick of everything. He started the insertion and from there, it was one long excruciating pain. I was already hyperventilating, which causes my fingers and toes to get numb and "lock up" unable to uncramp them. The Devil Incarnate than proceeds to inflate balloon. Another howling bout of pain. Then he started to get the barium liquid going....pain, pain and more pain..then -POP!, the probe and balloon fall out my ass.

After deep breathing and trying to get subdued - I said to the Devil - "Now what? Do I have to go thru this again?"

They got my nurse down from the floor and had her give me 2 doses of morphine. DIDN'T touch the pain one iota!

I get myself some what together and they do it all again. I had to bite down on a towel to keep my screams at bay. One of the attending techs sat next to me, held my hand and let me scratch and squeeze the living hell out of her! It was hideously painful. The worst I've experienced yet. ( I thought my prep for colonoscopy was the worst, this beat it 500%) The kind of pain you wish on mortal enemies and child abusers. I told them to take it out, I'm not going thru this again.

Well, luckily they got enough xrays to determine if I had blockages and leaks- All good.

I told every Dr and Resident that did rounds, they MUST go thru a colonoscopy prep and a barium enema as part of their training. And I was dead serious.

I'm almost certain that the pain I'm having is due to old poop in the colon trying to get out. After a regular enema the next day, I passed an oldie. Pain gone. I did another today, pain returned. Something's trying to hide,and then get out of my system.

So if you suffered thru my description of the Barium Enema, you are a brave soul. Hope it wasn't too gross.

Remember people: Eat fiber (fruits, veggies and whole grains), 30 mins of activity each day and pay attention to ANY changes in your gastro intestinal issues. I thought I had hemorrhoids, not freaking colon cancer! Take care of your BUTTS!!!!


Friday, August 14, 2009

Blip in the Road- Admitted to Hospital

I've been in Loyola since Wednesday afternoon. If you're interested here's the clinical details:

Tuesday I started having output from my butt - that's supposed to be out of commission, as I'm on an ileostomy. The Dr.was thinking this was unusual and wanted me to go to ER. After 6 hours, and some xrays, they determined that it was just some old stuff" wanting to escape, and they saw no blockages or fistulas.

The frequency of wanting to "eliminate" slowed down and then Bam, on Wed it started all over again on my way to Chemo. Lots of pain and urgency, so Dr. Lo postponed chemo, consulted with Dr. Shoup, my surgeon, and had me admitted.

MRI shows that I have some leakage from my ileo into the colon- the contrast liquid they give you to light up your organs was found in my colon.

So now it's a mystery as to why:
do I have a fistula? When tissue from to adjoining organs kind of fuse together? They haven't seen it on the scans, but the Dr. stated that it doesn't mean there isn't one.

Is it just leftover junk in my colon?

My other issue is the amount of liquid output in my pouch. My potassium and electrolytes are too low because of how much I'm losing thru diarrhea.

So, my prayer for this week is: Dear God, please let my doctors find a definitive answer to my painful output problems. Even more urgent, is for a way to slow down my output and keep me from having to go on a high dose drug with lots of side effects (tincture of opium) OR the worst would be doing IV nutrition. I pray that the lower spectrum drugs can slow down my output and loss of electrolytes.

Love to all my angels


UPDATE: Damn, I have to stay another day! The gastrograph film test they want to take can't be done today, MAYBE Satruday if not Monday. Do I have stay in the hospital all weekend? I think the prep they do has to be done at hospital. This totally sux.

Saturday, August 8, 2009

Busy week Ahead

My brother Pat and his son Kevin will be in Chicago this coming week. Katie, his daughter flew in yesterday and will be here a few days as well. Looking forward to spending time with them. Also attending Jordan's High School Grad party today. Then tomorrow my angel Julie and her family will be over for lunch. Lot's of family and love this week!!!!

Monday- Downtown with the nieces for Architectural Tour on the Chicago River. It's also my sister Kate's B-day!

I'll be attending a talk at Gilda's House (Gilda Radner from SNL) led by Colorectal Cancer Expert Dr. Al Bensen. I want to hear about current treatments. The exciting thing is that I have an appt. with him the very next day for a 2nd opinion! Trish Simon, a friend of my Sister's friend Linda, is fighting colon cancer that has metastasized as well. She is younger than me, but what a fighting spirit she has. She used her connections to get me an appt with Dr. Bensesn at Northwestern. I am so greatful to Trish.

I still don't have my medical records yet, which worry me. I need to put the pressure on to get them so Dr Bensen can review before Aug 14th.

I'm scared but anxious to start the 2nd opinion process. Some Dr's are very blunt and lays it out on the line- the good and the bad. I want to stay in a "good" hopeful place. But that's purely up to me.

I also have to tackle the paper work to apply for Long term Disability benefits- what a pain in the butt. My job has been eliminated at C&W, and with weekly chemo treatments and upcoming radiation, which is 5 days a week, I am limited in my ability to work, along with the side effects of chemo.

Wednesday, August 5, 2009

Chemo update and Scan Results

My scan showed further shrinkage of the larger masses in my liver. A slight reduction, not the 40-50% range after first scan. It's a bummer in my mind, but Dr. Lo still satisfied with my chemo progress.

I asked a bunch of questions today-

1) Would it be possible or more proactive to try a targeted therapy to my liver tumors instead of waiting it out for chemo to lose it's efficacy? Reply: stay on chemo as long as working, for best results

2) How many colon cancer patients are you currently treating? Reply: 10; She treats a high number of breast cancer. Which I can see, most of my connections and people at Chemo are Breast Cancer.

3) Colon cancer is now 2nd leading cancer diagnosis of late. Does the Loyola Cancer practice represent that stat in it's patient base? Reply: Yes

4) Why aren't cancer patients, or Me not eligible for Liver transplant: Reply: Very risky; new livers have a high occurrence of getting cancer. so a waste of a healthy organ

So I am in process of getting 2nd and 3rd opinion lined up.. waiting on getting hard copies of medical records. Just want to hear other experts.

My CEA marker reduced again from 9.9 to 7.5.

Clarifications around some of the smaller tumors which is a good sign that they are "drying up" as Dr.Lo put it.

So all in all, positive results.

I am convinced that to win the Battle, 90% is my will, my attitude and the Abundant Blessings I receive from my God Squad and angels network of friends, friends of friends, family etc..
Bless you All.

One prayer request: My childhood next door neighbor, Wendy, lost Both her parents in a span of 3 weeks. Her dad from dialysis complications, and her Mom, this past Sunday, from cardiac arrest 3 days after her triple bypass. Wendy and her mom were best friends. I ask for strength and healing while she processes these losses so cruelly at the same time.

XOXO Peggy

Sunday, August 2, 2009

The Blessings of Blogging

My middle-of-the-night insomnia gives me lots of time to think, in fact I can't turn it off, ergo the insomnia. One thing that I always think about is what I'm going to post next in my blog.

I worry if I have anything noteworthy to say that day or that week. Will it be one of my sassy, "I will fight this damn cancer" posts, or a funny poo-pouch blow-out, or a Gratitude, or "this chemo crap is annoying me" ?

Well, it's all of the above, and then some. Blogging about my Cancer journey has been a therapeutic endeavor. For people who know me, my voice is loud and clear via the writing- I write pretty much how I speak. That is what is connecting me to my followers.

I'm also very flattered by the feedback I get, both on the blog and through email, that they love reading my entries, feel my strength in the Cancer battle and that I'm, "inspirational". well, inspirational isn't how I would describe myself, as I'm still trying to find out how to manage all the "life lessons" and blessings and emotions that go along with my illness. I do love the fact that my friends and family can be a part of my journey via the Blog.

All I can say is that I blog what I feel and what I think, the good bad and the ugly.

Goodbye Hair

Dang, my hair is really thinning. A lot of hair came out today after I brushed it. I'm all scalpy. It makes me look old and frail - a weak mane, a fragile white scalp.

I ask the Good Lord to help me accept it.

Saturday, August 1, 2009

Received a beatiful letter from an old friend today

I received a beautiful letter from Tim Freer, a Marquette friend and classmate. I actaully went to a dance with him, and in Peggy fashion, fell in the bathtub where all the beers were on ice. Not one of my finer moments! His colleagues were going down memory lane and "whatever happened to..?" and googled/facebooked my name and found my Facebook and this blog.

He then reached out and wrote me a great letter full of incredibly touching support, details of his college buddies and his family and career as Judge, in Riverside, California.

I was moved to tears. That this busy man took the time to write me and tell me he and his wife and staff are part of my "team" of prayers is just beyond humbling.

I will of course write to him and express my overwhelming gratitude. I did call Kirsten, my college friend who blessed me last week by coming from Milwaukee to Elmhurst to spend a few precious hours with me. Kirsten was at the Marquette reunion last week and we also brought up Tim and his sister Camille.

So, once again, the love and blessings are abundant in my life. I am so humbled.