Notes on Healing

So, the healing has been going well. The pain hasn’t been too bad; mostly I’ve just been tired. I’ve slept many hours every day. The pain medicine contributes to the sleepiness, but mostly I think your body burns all of its energy in healing the wound. Plus, I think all of the stress leading up to the surgery wore me out. Knowing the good outcome allowed me to finally relax a little.

I’ve once again confirmed that daytime television is truly a load of crap. Actually, I was secretly looking forward to watching Oprah and The View everyday (something I would never admit to any of you in person!) but I never made it past 5 minutes of either show without falling asleep. My goodness, I forget that there is another whole world out there on the airwaves! Soap operas I can understand to some degree, but do people really watch Jerry Springer and Montel Williams? And why are there so many different courtroom shows? I saw one talk show that highlighted men who get pleasure by paying morbidly obese woman to sit upon them and squish them. I am not making this up.

I decided I should probably go back to work.

I went back on Tuesday – one week post surgery. I guess we will call it a transitional day. I went in at 10:00, took a two hour lunch, and left a 4:30. Mostly, I stared at my “To Do” list and thumbed through all the phone messages. I promised myself I’d do better on Wednesday.

But then Wednesday arrived. I had my post surgery follow up with the surgeon in the morning. I was so proud of my progress and I felt I was a model patient. When the doctor examined me he said there was a fluid build up inside the incision – how he could tell this I still don’t know. I couldn’t feel or see anything unusual. First he ripped off all the steri-strips (ouch). I am sensitive to adhesive so there is a good deal of skin irritation underneath. Then he proceeded to clean off the area with an alcohol swab that stung like crazy! He placed a needle in the incision and drained off 40 ccs of fluid. The nurse placed pressure on my breast to help all the fluid drain. Sounds painful, but it really wasn’t. He adds new steri-strips and orders me back in one week.

As I start to get dressed I realize that my boob is not happy about being handled so roughly. And my skin feels like it’s on fire. By time I got to my car, I was beginning to wonder if I’d be able to drive. Within a few minutes, I realize that I am in a great deal of pain that isn’t going to subside quickly. I was in the same amount of pain as the day after surgery! Suddenly, I felt back to square one. I needed drugs!

I made it to the office for just a few minutes to take care of one important piece of business. Then I drove home (with one arm) and tried to calm the fire inside. Things were better within a few hours, but I am still feeling very tender. Thank god I gave up the idea of going to Seattle this week. It would have been a mistake!

I guess the whole thing kinda caught me by surprise. I thought I was doing so well…. I thought we were just going to look at the incision – not poke around on it! I think maybe I underestimated the magnitude of my injuries.

I am feeling better now and I think I will be fine to try work again on Thursday. I just have to realize that I am still fairly vulnerable.

Surgery Is Over

Whew! I’m so glad to have the surgery part over. It is such a relief to hear that the sentinel node was negative. I feel like a great weight has been lifted off my shoulders. The initial pathology that happens while you are on the table is considered about 90% accurate and they conduct a more thorough pathology exam on the node and the removed tissue once surgery is complete. There’s a chance that the full pathology exam could identify some cancerous cells – but the chances are slim.

The sentinel node procedure is way cool – and way painful! I had to have four injections into my areola! Four needle sticks without any numbing agent or any pain killers! And it burns and stings like a mother tucker – YEOW! You know it’s bad when the doctor looks you in the eye and says, “This is going to hurt. I’m sorry. Feel free to scream, cuss, or call me names.” The only thing I can say is that the doctor was VERY quick and the burning went away within a few seconds. And of course the temporary pain was worth it considering the procedure may prevent you from having a large incision under your arm and the unnecessary removal of clean lymph nodes (as it did for me).

About 10 – 15 minutes before they take you into the operating room, you get a nice “cocktail” to help you relax. At that point, you don’t care what they do to you! (Some of you have seen the picture my husband dared to take of me in this goofy state! I will not be posting it here!) All my memories are a little fuzzy after that. I remember rolling into the operating room and having the oxygen mask put to my face. Then lights out!

Waking up is just as fuzzy. I remember asking about the node… several times... and being happy that it was negative. I started to have some nausea and they quickly gave me some phenergin which promptly knocked me out again for about 2 hours. When I awoke – the nausea was completely gone and they said I could go home instead of staying at the hospital. More good news!

The incision on my breast is not the same orientation we had discussed and I don’t like it. But I am happy to say there doesn’t appear to be any noticeable change in the shape or size of my breast. I don’t even have any swelling. The pain is tolerable and I think I will be okay in 4 or 5 days. My breast and underarm are covered with steri-strips so it will be a few weeks before I can actually “meet” the scar that will be a part of my life now.

Stop the presses! Just got a call from the doctor. The path report came back clean! The two nodes they took were clean and the margins around the tumor were clean. Yee ha! Feeling lucky. Think I‘ll take the advice of my friend Jane and go buy a lottery ticket! This is the best news yet!

Gonna relax the rest of this week and the weekend. I’ll probably go back to work Monday or Tuesday. As I said before, the pain is pretty tolerable, I just feel like I want to sleep all the time. I think I only need the pain killers for night time now, which means I will have a lot left over. Hey - if you’re real nice to me I might share:)

NODES ARE NEGATIVE!!

The nodes were negative! This is great, great news.

Surgery went well. I got to come home vs. staying at the hospital. I'm resting comfortably.

More later...

Last Minute Details

I check in at 6:00 a.m. for surgery. Ugh - I am NOT a morning person. I go to Radiology at 7:15 a.m. for the marking of the sentinel node and surgery should be around 9:00 a.m. I'm guessing an hour for surgery, 30-45 minutes in recovery, and in a room by 12:30 -1:00. Sleep the rest of the afternoon. Spend one night in the hospital and go home on Wednesday.

I am a little anxious this afternoon. All of the anxiety I put aside during the delay is catching up with me. I am not nervous about the surgery itself - just anxious about the final outcome. You know... the dreaded scar. What was that mantra again? Oh yeah.... Remember the bigger picture; I will learn to embrace the scar. Remember the bigger picture; I will learn to embrace the scar. Remember the bigger picture...

Oh, I am so ready to get this over with! I wish I could go home and go to sleep right now. Alas, there is a baseball game and a little boy who would be very disappointed if his mother did not attend.

I will post my surgical experiences (what I remember of them!) when I get out of the hospital. I'll talk to you all on the other side of this thing!

The Guesthouse

A little wisdom from the great Persian poet Rumi.

The Guesthouse

This being human is a guesthouse
Every morning a new arrival
A joy, a depression, a meanness
Some momentary awareness
Comes as an unexpected visitor

Welcome and entertain them all!
Even if they're a crowd of sorrows
Who violently sweep your house
Empty of its furniture
Still treat each guest honorably
He may be cleaning you out
For some new delight!

The dark thought, the shame, the malice
Meet them at the door laughing
And invite them in
Be grateful for whoever comes
Because each has been sent
As a guide from the beyond


Translated by Coleman Barks

Hurry Up And Wait

When the doctor's office let me know my surgery had to be re-scheduled, I almost told them they had to send a bottle of valium to me as a penalty fee! And the valium wasn't for me only - some of my friends and family were more stressed about the re-scheduling than I was! It was frustrating, but I made the decision not to get upset about it. The scheduler told me that the doctor had some personal business he had to take care of. I figure the doctor is a human too and needs his time now and then. The date will come soon enough.

Now that the initial shock of the word CANCER has worn off and I have better information, I am trying to scale down the drama of everything. (Me? A drama queen?) It's very easy to get caught up in the fear and emotion of cancer and get carried away. It can consume you. I have to stop and remind myself that this isn't a terrible tragedy - at least not yet. Yes - I will have a scar on one of the loveliest parts of my body. Yes - the chemo will make me lose my hair and feel bad. Yes - I will have to live with some uncertainty (don't we all every day?). But I will get better, and I will go on with my life for the time being. And what if I have a recurrence? I'd hate to think that I'd spent my limited time moping or in some heightened state of anxiety or crisis. I have to learn to deal with this diagnosis with some amount of peacefulness.

I'm not promising that there won't be bad days or that I won't whine. I'm not promising to swear off all drama... I'm just saying that I am trying to decrease the drama and raise the peace. Having a treatment plan helps a great deal. I know where I'm going now and what I have to do.

Speaking of a treatment plan... I had an opportunity to speak with Steven, a good friend of mine who is a surgeon living in Miami. Steven concurred with my decision to have a lumpectomy vs. mastectomy and laid out all of his reasons why. As he was speaking, he echoed all of my thoughts almost exactly. It was so comforting to have someone with great knowledge and experience, who knows me well, to reach the same conclusion as I did. I was having some anxiety about my decision, but after talking to Steven, I know I've made the best choice for me without a doubt. Why didn't I talk to him sooner?

Btw - I was finally able to get out of jury duty. It took me awhile to get someone on the phone, but once I did, they were very nice. I had to ask my doctor to fax a letter stating that I needed to be excused for medical reasons. I feel kinda weird because I don't have a piece of paper or anything that verifies I've been excused - I only have the word of the bailiff over the phone. What's the penalty for skipping out on jury duty?

New Date!

Got the call from the doctor's office right after I posted the last message! The surgery will now be on TUESDAY, APRIL 22nd.

Rats!

My surgery for Thursday has been CANCELLED because of a scheduling conflict with the doctor. Looks like it will be re-scheduled for next Monday or Tuesday. I will post here when I find out the new date.

Well, this certainly messes up my plans! I'm trying not to be too frustrated by it. I don't know why, but I somehow feel that there is a good reason for the postponement...

More later.

Gatekeepers

Obviously, one of my biggest concerns is spread of the cancer to other parts of my body. The presence of cancer in the lymph nodes is a sign that it is spreading. I have been trying to visualize the cancer cells staying contained in the primary mass in my breast. All the cancer cells need to stay right where they are so that the surgeon can remove them all during the lumpectomy. No scattering of the cancer cells is allowed! Travel restrictions are being strictly enforced.

As I was visualizing this thought, a funny idea popped into my head. I started seeing the "card soldiers" from the Disney movie Alice in Wonderland. I visualized the soldiers surrounding the tumor in my breast and pointing their spears at it. Their wide, card bodies form a tight gate around the herd of cancer cells. Any cells that try to escape are promptly poked back into the herd.

I can' remember if they were effective soldiers in the movie, but they are doing great work for me!

The Plan Takes Shape

I visited with my surgeon this morning and after gathering all the facts, I have chosen the option of a lumpectomy. The surgery will be Thursday, April 17th. I was at the hospital from 8:30 this morning until 2:30 this afternoon taking care of all the pre-op details (blood work, chest x-ray, ekg, consent forms, etc.)

The day of surgery will begin with the sentinel node procedure. They will inject a radioactive dye into the mass and then determine which lymph node it drains into first. That node will then be removed and examined. If it shows cancer, they will make a bigger incision and take all the nodes. If it is cancer free they will move on to the lumpectomy. The nodes are one of the best prognosticators of success. I hope they are cancer free.

The lumpectomy means they will remove the tumor and some of the surrounding tissue. It will leave me with a pretty big scar that I am still unhappy about :( - but it seems like the lesser of all the other "evils" to me. I will grow to embrace the scar... but it will take some time. I actually made the surgeon draw the incision lines on my breast with an ink pen so that I can begin to picture what it will be like. He was reluctant... but he did it! Sigh. It is larger than I had hoped... When did I become so vain? I will learn to embrace the scar. I will learn to embrace the scar...

I will stay one night in the hospital. Recovery should be fairly short. The Dr. says I will be able to drive within 3-4 days! I forgot to ask him what he thinks about me going to Seattle two weeks post surgery! Do you think that's crazy?

Looks like chemo will begin about 3-4 weeks post surgery. Then radiation after that. My goal is to have all treatment complete by Christmas. I think that is a reasonable goal.

It feels good to finally have the decision made and the date set. Onward!!

More Gratitude

As I read other people’s cancer stories on the web, I have come across a reoccurring theme. A lot of people discuss frustration with their doctor or with the medical system in general. It makes me realize how truly fortunate I am. There have been a few things that have bothered me about the process, but for the most part things have been pretty smooth. The fact that my husband is on faculty at the hospital may have something to do with it (okay – maybe a lot!) but I also think it is a good facility. Waiting room time has been minimal, my results have come quickly, my phone calls have been returned, and my questions have all been answered. I have found all of the staff friendly and helpful. And thank goodness I live in a city where such a facility exists. What if I lived in a small town with the nearest hospital 100 miles away! I can’t imagine the difficulties that would come with such a commute.

Another thing I have in my favor is health insurance! Thank god for health insurance. And because my husband is on the hospital faculty, we probably have better insurance than most. It is easy to see how a diagnosis like mine could be a devastating financial blow for many families. At the beginning of every major procedure, they’ve handed me a piece of paper that says, “It’s possible that your insurance may not cover the cost of this procedure. Please sign here saying you will be responsible for the bill if insurance doesn’t pay. The cost of this test is $3,500.” $3,500 dollars!!! That’s a lot of money – and we are just getting started! So on top of everything else, I’m glad we don’t have to worry about being financially destroyed.

I will say the one thing that upset me was the form that asks you to assure payment of the tests. Not so much because it affects me - but because of all the other people it must affect. This kind of form should not be given to you as you are walking in the door for the procedure. I mean, what are you gonna do? There’s no time to call your insurance company to see if you are covered. (I had been told I was pre-certified but they still gave me the form!) And there’s no time to call your doctor to ask him if this test is absolutely necessary. I feel like people are signing the form under duress. I understand the hospital has to take precautions against the insurance companies, but the test was scheduled for over a week. Couldn’t they have sent me the form days before the procedure? I’m already nervous about the procedure when I arrive at the hospital. The last thing I need to be worrying about at that moment is a huge bill that I can’t afford! I wrote a letter and put it in the suggestion box at the clinic. I hope somebody reads it and takes it to heart.

You know, I didn’t ask for cancer. I don’t want cancer. But since I have it, I consider myself real lucky to have the necessary resources available to fight it. Things could be worse. ALOT worse.

God, Gratitude, Journeys, and Prayers

I am not exactly what you would call a very spiritual person. At the risk of offending any readers, I think it’s important for me to state that I do not identify myself as a Christian or as a part of any other established religion. As I look around at the world and see all of the amazing things that exist, I feel there must be something greater than me – something or someone that created all this wonder. But beyond that, I have very little definition or parameters that explain what “god” is or how she operates. I guess it’s best to say that I believe in the idea of one god, but many paths. There is more than one way to feel the presence of god and to honor her.

The one thing I know that truly connects me to god is the feeling of gratitude. Thank you, god, for trees and flowers. For lakes and wind and sun and snow. Thank you for animals, for laughter, for family… for humans. Thank you for the experience of knowing love. I don’t fully understand what god is, why she created this universe, or even why I am here. But I know I am grateful and appreciative to experience all of these things. For me, this gratitude is the basis of everything I believe. We honor god by nurturing, respecting, and taking care of the things we appreciate.

Many, many years ago, I gleamed an important lesson from the iconic movie The Wizard of Oz. Dorothy and all of her companions travel to Oz to see the great wizard. They believe he will be the answer to all their prayers – that he will give them everything they need to feel complete. But when they get to the wizard he doesn’t really give them anything at all. He simply shows them how they each already possess the attributes they are seeking. They didn’t need to receive anything from the wizard – they needed the journey to Oz to discover their own strengths. The lion learns he is brave during a challenge, the scarecrow learns he is smart during a crisis. The final destination wasn’t the point – it was the journey that mattered. I think Glenda says, “You had the power inside you all along. All you had to do was wish it so.” I don’t think the goal of life is to end up in heaven. I think the goal is to learn and to experience as much as you can on earth. It’s not about the destination, it's all about the journey and what you learn about yourself along the way.

Anyway… I started this philosophical post because I wanted to acknowledge all of the many people who are praying for me. Many of my friends have told me they are praying for me and they have asked their church or family to pray for me as well. While prayer is not one of the paths I personally use to reach god, I am respectful that others have chosen that route and appreciative that they include me. It honors me. Thank you.

Well, hmmmm…. I wonder what lessons I’ll be learning on this next part of the journey.

Good News

Biopsy 2 is benign - no cancer. Yea! I now have all the surgery options open to me. All I have to do is choose! What a great way to enter the weekend.

I visit the surgeon on Wednesday. I feel certain we will make a decision and schedule a date for the surgery at that time. It will be great to finally get a plan of action in place.

Progress.

Jury Duty

LOL! Found out today that I've been summoned for Juy Duty! What a hoot! The letter says there are NO Exceptions for service. There isn't even a number for me to call. So I guess I will have to miss ONE MORE day of work to go through the drill. Normally, I might be kind of excited to serve - right now is bad timing. Hope I'm not 2 days post-surgery or something like that! If anybody has any hints about what to do - please share!

Hate is a Strong Word, but I Really, Really, Really Don't Like the Tube

Biopsy 2 is over. Not toooo bad, but a little freaky. I was lying on my stomach and my boob was compressed in a vise grip so you can’t really move much. My chin and forehead were resting on a foam cushion inches off the table. Some how the sheet got bunched up in front of my face and I couldn't see any light while I was lying in the MRI tube. As I am pretty claustrophobic, this produced a moment of extreme anxiety for me. I felt like I was gonna bust out of there and run far, far away. Every fiber of my being was telling me to get up. It took a lot of effort to keep myself in control for those 10-15 minutes.

After they pulled me out, I had to stay in that position for another 30 minutes or so while the doctor then did the actual biopsy. I had to ask the tech to hold my hand and talk to me for a few minutes so I could calm down and stop trembling. I finally figured out that if we moved the sheet I could see light and that helped me tremendously. All in all, it was 4 trips into that tube that I don't like.

I hate that I am so claustrophobic; I have tried hard to overcome it. I have more control over it as I get older, but sometimes it simply overwhelms me. One of the most important things I learned today it that it’s important to ask for help when you need it. The tech was more than happy to hold my hand and talk and it went a long way towards calming me down (that and the valium was probably starting to kick in!)

I am pretty sore, but so far no hematoma. Looks like I will avoid that nuisance this go around. Thank goodness.

Hope I’m not making every procedure sound like a nightmare… they really aren’t that bad. Just annoying. We expect results on Monday. Friday if we are lucky.

Gonna take another valium and go to bed. One more notch on my procedure tally.

Talking to Eli

For some reason, I blurted out the information about chemotherapy to Eli last night. His reaction was not one of fear - though his eyes got pretty big when I told him I would lose all of my hair. He simply said, "Mom - there is no reason to be embarrassed about losing your hair. If anybody makes fun of you, you tell them, 'Look, people, I'm taking medicine for cancer and it made my hair fall out. So just deal with it!' Really, Mom. You don't have to be embarrassed."

When I told him I was more worried about throwing up than losing my hair, his reply was simple. "We will feed you saltine crackers and sprite."

I think I'm going to be in good hands:)