Family Visits

So here's the short of it,
Dad's had lots of company and is doing better. I'm still mulling all the information from doctor visits and trying to come to a couple of decisions about treatment.

And here's the long

Both my brothers have been here this weekend. Steve, my younger brother came in on Saturday. His daughters all made the trek from their various homes to visit PaPa. Lauren and Ryan let their new baby girl, Madison Claire stay with me while they went to the hospital. That was pretty fun. Russ came in this afternoon.

Dad is much more comfortable now that he has the breathing tube removed from his throat and has the tracheotomy. He seems much stronger and even though he can't talk, we can try to lip read. He laughed some at the stories we told and seems in much better spirits. I finally figured out that I can buy a 7 day pass to the parking garage at Erlanger.

I am still thinking and working through all the pros and cons of the medical decisions I have to make. I thought I had a clear treatment path, but it's certainly less clear than I first imagined.

My dear friend Moggie sent this modern translation of Psalm 4
It is a great comfort to me right now.

Even in the midst of great pain, Lord,

I praise you for that which is.

I will not refuse this grief

or close myself to this anguish.

Let shallow men pray for ease:

"Comfort us; shield us from sorrow."

I pray for whatever you send me,

and I ask to receive it as your gift.

You have put a joy in my heart

greater than all the world's riches.

I lie down trusting the darkness,

for I know that even now you are here.

by Stephen Mitchell

Thank you Moggie.

Pantyliners and Decisions

So here's the short of it,
Pantyliners are a lifesaver! And I have to make a decision. I appreciate your continued prayers.

And here's the long
I saw my wonderful surgeon for a follow up on Friday morning. She says that I'm healing nicely and gave me the interpretation of the pathology from the surgery. When she looked at the awful problems I'm having with the surgical tape (even that paper stuff) and she gave me the best solution ever. Pantyliners! So I just cut the pantyliner to the size it needs to be - it's got the adhesive on the back of it to stick to my special bra and there we have it - a comfortable bandage to cover the incision spots and no tape to hurt my skin. Who would have known.

Decisions.
I've had an appointment with my Radiologist. He is very reluctant for me to have any additional surgical work done, because it will move the tissues around and he won't be able to target the spot that needs a radiation boost - that spot where the margin is only .5mm.

Lou, my wonderful son-in-law has been giving me good medical interpretations.
David, my doctor cousin, tonight, said "well, you know the thing about cancer is that it only takes one cell."

So there's a decision.
I know from out there, it probably seems pretty simple.
From here the confusion and difficulty is mostly about this.

I didn't picture this in my life to start out with. Once it was here, I made a plan and set out to get on with that plan and beat this thing. Well, even the plan isn't going the way I expected. There have been so many twists and turns and things that looked like one thing but turned into something else! Recently Elizabeth Edwards said something like, "I didn't picture my life this way, but here it is, and I have to live it like this; I don't have any other choice." So that's where I am.

In the meantime, my Dad had sugery this morning to take out his breathing tube and insert a tracheotomy and a peg feeding tube, as well as something called a green filter to prevent blood clots from getting to his heart and lungs. He looks so much better! We still have a long way to go - but Dad has always been determined!

So for tonight.

I'm thankful for the comfort of pantyliners!

I'm so grateful for the doctors and nurses that are taking such good care of Dad.

Anatomy Lesson

So here's the short of it,
I am so sore and so tired!

And here's the long

I really have had an anatomy lesson. Who knew that you used your chest muscles just to hold a jar while your other hand opened it? Who knew that the muscles in your back work so hard just to compensate for chest muscles that aren’t able to carry their load? Who knew that surgical tape burns could hurt so much? And who knew that just walking would be so jarring that I would just ache?

I’m sure that many of you for one reason or another could have told me these things. But as we say in my line of work, there’s nothing like hands on experience to make the learning stick!

My Dad is still in the CSICU at Erlanger. He is so much better than on Sunday when the “event” as they are calling it, landed him there. He is on a respirator or ventilator so he’s not able to communicate with us and that’s really frustrating for him. I’m so eager for that part to pass so that we can talk with him instead of to him. I'm also eager for him to progress to a rehab facility!

At one point I was planning to try to work the last of this week and then next week until the next step in my treatment! What on earth was I thinking? I am so tired! I’ve slept so much and just going to the hospital to see Dad makes me so tired.

Tonight I am grateful for the gift of sleep and the knowledge that sleep brings healing.

Tired

So here's the short of it,
I am quite tired. My Dad had spinal surgery on Friday. On Sunday morning he had an event. He is now in ICU and I have overexerted. I am going to focus on rest and seeing Dad.

And here's the long

We knew this would be a roller coaster. Alan had double hernia surgery the week before my surgery. Then Dad's spinal surgery which had been postponed twice was scheduled for Friday, after my surgery on Tuesday.

Dad had lots of difficulty getting comfortable after the surgery on Friday. Steve and Pat spent the night with him on Friday. Saturday night Russ took the night shift. He was still very uncomfortable and Russ says it was apparent that Dad was feeling disoriented. Mom got to the hospital about 8 Sunday morning, and I got a phone call about 10:30 saying that they were taking Dad to ICU.

Dad's stable now. He is on a respirator and is in the good care of the CSICU at Erlanger. But there was an intense amount of time in the waiting room of the ICU until very late Sunday night. I completely didn't think about needing to be still or such. We were all so worried about Daddy. As a result, I'm absolutely weary, extremely sore and very overextended! I've been to the hospital twice today although I did sleep for quite awhile this afternoon, and intend to go to bed early this evening.

Mom has been such a trooper. And I have such hope that with time, Dad will have a good recovery.

I am thankful today for the nurses and Doctors in the CSICU at Erlanger who are taking care of my
Dad.

I am especially grateful for my husband Alan who has been a rock.

I am grateful that my brothers Russ and Steve with his wife Pat have been able to be here until today. I know it's been such a comfort to Mom as well as Dad to have them here.

Pathology

So here's the short of it,
Dr. Witherspoon called with pathology results. Every outcome is, in the end, positive! I've learned that "breast cancer" only means where the cancer is - there are many kinds and I have a kind for which there is good medicine.

And here's the long

Before my surgery the mammogram, the ultrasound, and the MRI all were showing different variations of the tumor. The MRI in particular showed something that could be characterized as tendrils, or maybe tentacles stretching from the tumor and growing out through my breast tissue. The tumor itself was close to my chest wall. However, Dr. Witherspoon cautioned that MRI's aren't routinely used for screening, because they pick up many things that are not cancer. Only the surgery would give the answer.

The tentacles were an early stage of cancer which is still contained within the milk ducts, but which would eventually become invasive. I haven't gotten the pathology report yet, but I believe they are called "in situ". She also said that this kind of cancer cell is not always picked up on a mammogram!

So everything is out with clean margins except for one place right next to the skin, which I understand is not a concern.

The two lymph nodes are clean and clear of cancer cells! This is great news.

The tumor is HER-2 and Estrogen receptor positive. HER-2 is a specific genetic mutation that results in a very aggressive form of cancer.
Here are a couple of links that give a pretty good explanation of HER-2. One of them is from the manufacturer of the drug used to treat it.
http://www.herceptin.com/her2-breast-cancer/testing-education/what-is.jsp
http://www.universityofcalifornia.edu/news/article/8765

Herceptin is a molecularly targeted therapy and only began to be used in 2000. It has had amazing results.

Although I don't know the details yet, or the chronology, it seems that the treatment protocol will include radiation, chemotherapy, herceptin, and an estrogen repressor.

This evening, my gratitude goes to Dr. Dennis Slamon, the UCLA researcher whose laboratory and clinical research for 12 years led to the development of Herceptin. Here's a link to an article about him.
http://laist.com/2008/10/13/scientist_dr_dennis_slamon_and_herc.php

Tonight he's my hero.

Dennis Slamon, M.D., Ph.D.

Tape Burns

So here's the short of it,
Two days out from surgery and I feel like I'm gaining strength and my confused head is becoming a little clearer. I changed the bandage to get some relief from "tape burns".

And here's the long
I'm still very sore and tender. I've joked that now I know what it feels like to get stabbed with a knife...oh, maybe not, because I did get some stitches, and I'm sure that Dr. Witherspoon's "knife" was very intentional and caused as little collateral damage as possible.

Today's development is all about tape, surgical tape.
After the surgery, I got this great bandaging job done - gauze bandages over the stitch area and then a cover with clear tape so that I don't get the incision sites wet. The tape also offered a bit of support.

This morning I began to feel lots of burning discomfort, so I took some more Advil. It really didn't get any better so I finally checked. I was having a reaction right at the edges of the tape. It's a bit like a carpet burn. SO, I called Dr. Witherspoon's office and spoke to one of the nurses. The old bandages came off and I'm now rebandaged with gauze and paper tape. The skin burns are extremely sensitive and the new bandage doesn't offer any support. But I'm glad to get a kind of tape that won't cause a skin reaction.

Changing the bandages let me get a good look at the surgical sites. There is a fairly long incision at the side of my breast and an even larger one on the inside bottom. I'm also pretty bruised. But all in all, I think I'm gaining strength, thinking more clearly, and feeling better every day.

Reminders

So here's the short of it,
For the day after surgery , I think I'm in pretty good shape.

And here's the long
My body is reminding me that I've just had surgery.

1) My urine is a strange light blueish, light greenish color - delightful information for most of you to hear about, I'm sure. It's one of the ways my body is getting rid of the blue dye they used. I think it is remarkable that the surgeon can follow the path of blue dye to see which lymph node the tumor drains to.

2) Nothing tastes good! I guess that's not so bad.

3) I have anesthesia brain.

4) I'm a little unsteady when I try to walk.

5) Strangely enough both sides of my back along where a bra back goes feel tender - like I exercised it too much.

and, of course
6) I am really sore and quite swollen. It's hard to get comfortable whether sitting, lying down, or standing. I think it gets easier every day.


Thank you for your continued prayers and good meditations.

Home From Surgery

First of all, thanks for your continued support through prayer, and positive thinking.

I'm home from the surgery. I don't even remember getting here! I do remember having all those wires inserted before the surgery! More OUCH! But boy am I glad the surgeon can make a grid to get to the right spot. Another plus, this time the anesthesia did NOT make me sick.

Of course we have to wait for the pathology - but Dr. Witherspoon told Alan that the margins looked clean. I'll get the full story including the later pathologies when I go back for the follow-up.

I'm pretty sleepy and will try to write more if I wake later tonight or tomorrow. My discomfort right now is primarily right under that big magic marker X marks the spot from the Sentinel Node Mapping Project! I've got a great little heart shaped pillow given to me by the wonderful people at the Mary Ellen Locher Center. It just fits the bill, under my arm for a little support and a bit of pressure on the sore place! Thanks Mary Ellen Locher center.

Go here to see the good work they do!
http://www.maryellenlocherfoundation.org/index.html

Here's a partial list of thank you's -
Alan - my wonderful husband who has been there every step of the way, never getting in the way of my need to be as independent as I can be.

Mom - From coming up on Saturday and putting in an herb garden, to making soup, to coming down and sitting in the waiting room!

Dad - One time I said, "Daddy can I hold onto to you?" and you replied, "Honey, you can always hold on, whenever you need to". Thanks for your quiet encouragement.

Mommy Anne - for your encouragement.

Shelley and Lou - Wow, what a support you've both been to help me sort through the medical terminology, and just be there.

Daniel - just checking in has been a great support for me.

Liga - your interest, and conversations, yes even your tears, have helped me get to this point.

Valdis - coming by, helping me with technology, and keeping your own stuff going in a positive direction is so helping me.

I know I owe lots more thank you's - and I promise I'll get to them,
But for now, one more thank you to the army of prayer warriors out there who have supported me in the way you know best to the God of your understanding - THANKS.

Meet my Surgeon

I’d like you to meet my surgeon, Dr. Laura Witherspoon.

Here’s an article about her http://www.easttnmedicalnews.com/news.php?viewStory=1249

The most important thing for me, is that I trust her! I’ll be in her capable hands tomorrow.

How are you feeling?

For the last 3 weeks, people have been asking me "How are you feeling?" And I didn't really feel any different at all. I can't feel the tumor; the biopsy spot is really just a teeninsy incision; and if someone hadn't told me I'd have no idea I have cancer. But today is the day I think it’s really OK to start asking, “how are you feeling?” This afternoon I had some pre-operative stuff done to get ready for surgery in the morning. There was the regular stuff which isn’t so much - a chest x-ray, drawing some blood. Then I had this procedure called Lymph Node Mapping to get ready for the Sentinel Node Biopsy - a part of tomorrow's procedure. I got nuclear medicine injected into the area around the tumor and in the area right around the nipple (that was an ouch! a really big ouch!) Then I spent almost 2 hours in a Low Energy High Resolution (LEHR) Infinia Hawkeye 4 imaging machine with my arm above my head getting pictures taken. I just love the idea that the spots my surgeon needs to see are all lit up and she knows exactly where to go! All in all this was a very doable day! But if someone asked “how are you feeling”, I’d have to say, a little sore and a little sad. When the needle pricks happened my eyes filled …was it the hurt, or was it the smack down of no longer being able to avoid this disease and knowing that it and I are going to be in a battle for my life.

Link here if you want to learn more about Lymph Node Mapping and Sentinel Node Biopsy

http://www2.mdanderson.org/app/snb/mainmenu.htm

Even more graphic images of the procedure are here!

http://images.google.com/images?hl=en&ie=UTF-8&q=sentinel%20node%20biopsy%20procedure&sa=N&tab=wi&um=1

Of course some fun stuff as well….I visited Dr. Brzezienski to get “marked up”. This will allow my surgeon to know right where she should make the incision. He’s quick and to the point. So not only do I have a radioactive map inside the skin of my left breast. I have an X marks the spot in permanent black marker which is somewhere near the “sentinel node” and I have a grid on my breast in that surgical ink so that the surgeon will know the best place to enter the breast. Wow! I even have a mark at the bottom of my throat in surgical ink?

So how am I feeling? I'm sore; I'm sad; and I’m nervous.

I also continue to be very hopeful.

I report to outpatient surgery at 6:30 in the morning.

I’ll do a quick update if I can keep my eyes open in the evening.

I continue to request your positive thoughts, meditations, and prayers - in whatever way makes most sense to you.

First Post

Tuesday morning I’ll have surgery to remove the cancer from my left breast.

I was quite surprised to learn that the suspicious place on my mammogram was cancer. I’ve had suspicious places before; I’ve been called back for an ultrasound before. I’ve even had a biopsy before. We don’t have a family history of breast cancer. Wow, was I surprised!

I think I’ve caught my breath now. I have breast cancer. I am led to understand that I have a difficult year ahead. I also understand that I have every reason to believe the outcome will be the very best – cancer free!

I’m incredibly fortunate to have family, friends, and colleagues to support me through this journey.