Time Out For a bit O'Whining

Don't worry - I'm still jazzed on my good news, but I wouldn't be ME if i didn't complain just a tad, now would I?

The Erbatux Ugly Stick is just NOT letting go! My skin is not responding to the ointment anymore and it burns, and stings and hurts and is U-G-L-Y. I'm sick of scaring small children and geting the impolite stares from people in public.

OK, done for now.

XOXOXO

Hey Prayer Warriors - WE DID IT!!!

March 17th, 2010 - Confirmed Liver resection surgery date. Not only is it St. Patrick's Day, it is exactly ONE day to the year that my world changed forever, the day I was officially told of my cancer.

A collective victory to be sure. My posse of prayer warriors - you've been in this fight with me since Day 1 and we are one step closer to victory. You ALL can attest to the power of prayer.
I told Lee and Katie and Desi and my parents that I wish I could have every single person that has prayed for me in one room so I can hug you all and thank you all personally for your devoted prayer. I guess all I can do to thank you is to Honor you all by continuing to fight and to figure out a way to live my life honorably with a gratitude for all the blessings I've received during this battle. I hope I don't disappoint!

So, now, for the next few weeks I must tend to the details:

Find affordable accommodations in NYC for my family
Airline reservations
Fill out FASFA forms for college aid for Colleen
File Taxes
Tackle Insurance and Hospital bills Nightmare
etc...

I bought a 20-class pass to Elmhurst Yoga Shala and plan on taking all the classes I can. I need to get my mind and body strong for this next stage of the fight. I'm not the "yoga" type - calm and centered and peaceful - but I could really use the ability to meditate and focus my mind so I don't flit and fly all over the place when I'm awake at 2 in the morning. The nightly rambling of my brain is getting annoying - I can't turn it off.

I'm soooo happy that Dr. Fong will operate on me. I'm scared, anxious, and excited. But I know I have all of you to keep me going!

((HUGS))

Peggy

HOPE....

That is what Peg was offered yesterday. She and Lee met with Dr. Fong at Sloan Kettering and he feels she is a good candidate for surgery. It is surgery that will give her the best chance at being cured so surgery it will be. The sound of Peg's voice after she left the doctors office and told us the news was positively joyful, through tears of course, but joyful.

There is more to it than just operating and magically the cancer will be gone but now she has hope and a plan which is what Peg has wanted.

My dad said he feels a miracle is in the making. Part of that miracle is our family friend, Dr. Miller. He been instrumental in getting Peggy in to Dr. Fong at Sloan Kettering. He has guided Peg through every process, explained things in lay terms, and peppered it with a little spiritual guidence.

Since Peg has gone back on chemo her hands hurt so she did not want to type today but wanted to let you know how things went. She is back home and will be planning out the course that will take her back to Sloan for surgery. Details, details, details. As soon as she is feeling up to it she'll be blogging once more in the raw, colorful, and heartfelt way that only she can.

Please keep praying for Peggy's complete recovery.

Katie

Countdown to New York

• Biopsy slides - Check
• Pet Scans and MRI images - Check
• Insurance Cards and Photo IDs - Check

Lee & I leave for New York this Sunday for our appointment with Dr. Fong at Sloan Kettering.

What do I hope to get from this meeting?

Well, the ultimate goal is to have surgery on my liver to get rid of all visible signs of cancer. That - is the best hope for a cure. So, I want Dr. Fong to offer me surgery - surgery with confidence.

I want to understand what my options are and which one is the best to pursue. I want a plan of attack. I want to know what the next step is for me to fight for. I want to know where to put my energy and my focus. I want longevity. I want life. I want to be humble enough to accept God's will.

Seriously, has cancer made me TOTALLY stupid?

Don't answer that.

I get a call from the Chemo Hospital yesterday-
"Peggy, this is Nurse Linda, you missed your infusion appt. today and you never miss appointments."

Me: "I'm no longer on the every week chemo, so that appointment should have been deleted."

Today Becky, my oncologists Nurse calls me and tells me I missed the appt. I relayed to her that I AM positive Dr. Lo and I discussed that I was only getting an every other week chemo infusion. did she change her mind or mix me up with another patient?

So, I basically am back at the frickin' freakin' hospital every week for chemo. I was enjoying the idea of every other week, and to hanging onto my new-found energy.

I'll never know for sure if, once again, there was a communication breakdown and I "misunderstood" Dr. Lo or if I dreamt the whole conversation and made up my own schedule. It pisses me off. Because I am not clear with her, I ask and confirm her answers ALWAYS and I KNOW she said every other week, to which I replied, Yippee, or yea, or something to that effect.

Damn.

Sloan Kettering Date Set and an update on Communication Hell

Consultation with Dr. Fong at Sloan Kettering booked for January 11th.

Spoke with my surgeon, Dr. Shoup - Loyola, to let her know of my trip to see the Surgeon that trained HER. She'll call him and discuss my case and his findings as well.

I also got clarification from her regarding the "Am I a candidate for surgery to remove liver tumors or not". It was my understanding that, per the last Loyola team meeting, I was NOT a candidate. I came to that conclusion based on the fact that it wasn't presented to me as an option, only TheraShperes. Dr. Shoup explained that Theraspheres was presented as an optional treatment because it wouldn't "harm" the liver should surgery be done down the road.

Dr. Shoup also stated that I "could" have surgery but it is a matter of "should" I have surgery.
I'm not entirely clear on the reasons why I should not have surgery but here are some:

• my tumors are on all lobes of liver, if all were cut out, not enough liver left to survive
• if only one side of liver operated on, that leaves other tumors, meaning not "cured"
• the liver surgery could end up compromising my ability to receive chemo and can also effect kidneys

I hope to get more understanding on the risks/benefits (although that is ALWAYS unclear) from my meeting with Dr Bertram at Northwestern today, and from Dr. Fong.

I saw Dr. Lo, my oncologist, yesterday at chemo and brought her up to date on my other consultations. I told her my continued frustrations with communication, and that as a patient, I may hear "the bad" news and not the good, or that if a limited amount of information is told to me, I will interpret and assume a host of other things. So I asked her to make sure she gives me more and clearer reasons for any team opinions and options presented to me so I can better process it and make decisions. I explained to her that I'm trying to get at much info and understanding as I can while my energy level and brain function are Good right now - while my chemo regimen is lighter, I may very well fall back into fatigue and Chemo Brain and don't want to be in a further position of weakness when making decisions on my care. I think she "got" it.

So my Angel Prayer Warriors, finish your shopping and gift wrapping and enjoy the time with your family and friends this week. As always, I thank you from the depths of my heart for all your support, prayers and good vibes.

((HUGS)) Peggy

I'm In - made It Behind the Iron Curtain of Appt. Screening at Sloan Kettering!

Something beautiful has been happening in the past 48 hours or so, let me try and explain:

You know when you have to deal with annoying but necessary bureaucratic procedures and phone calls? Like tech help for a computer problem and you go through 27 layers of "If X Press 1" until you finally reach a live body....It's really frustrating, highly time-consuming but you just know, that in order to get resolution, you need to get your mind all set that this is going to be a long phone call and very frustrating.

So, after my rookie attempt at getting the ball rolling at Sloan Kettering, Dr. Miller, my connection to Dr. Fong (liver surgeon at Sloan) heard my tale and emailed Dr. Fong. Dr. Miller gave him my case background and Dr. Fong replied that I should call his office to get an appt.

It was NOT the general Appt. Number, it was Dr. Fong's Office Number. Yippee! I'm behind the Iron Curtain and I have the email trail to prove it!

So, first thing Monday morning I call THE number at Sloan Kettering. I was leery, did Dr. Fong give me another general number and I'd still have to maneuver my way through the appointment labyrinth? I left a message and moved on to my next phone call - Northwestern Hospital, for an appt. with the surgeons to get their opinion on my case.

Now, back to my opening statement that "something beautiful has happened in the past 48 hours"...(I know, I know, it takes me a while to make a point):

They called back. The SAME day. Before Noon, in fact.

Terry from Dr. Fong's office said the magic words "You're approved and fax over every surgical, chemo, blood and pathology report since your diagnosis. Then we'll schedule the appt."

Linda from Dr. Beltram's office at Northwestern called to schedule surgery consultation for next week.

The cherry on the cake is that instead of having to go through the Loyola records department to get copies of all my records, my call to the Cancer Center found me connected to Nurse Jimenez, who printed everything for me and left it with the Security Guard for me to pick up last night. What an Angel! That saved me time folks, the Records Dept. is a black hole and I told Nurse Jimenez I just didn't have the leisure of time to wait on those records. She is getting some thank you treats delivered by me today!

So, the past 48 hours was a blessing of things coming together; things falling into place without so much angst and energy and worry that it won't all work out the way you want it to and NEED it to.

It may seem small, but phone calls answered in an unusually timely manner, a kind Nurse that did me a huge favor, the family friend that reached out to connect me to a highly reputable surgeon.....I so appreciate getting a 2-day feeling of peace and satisfaction amidst the constant highs and lows of cancer.

So, don't take it for granted if you have a run of things "falling into place"...there's usually someone else involved helping you along.


XOXOXO

Peggy