To Be or Not To Be...Reconstructed. THAT is the Question

Well, I met with the reconstruction surgeon today for my follow up appointment.
He had ordered a duplex ultrasound to check the viability of my blood vessels to see if I was a good candidate for the surgery.

So, I went in and he had the results and yes, my blood vessels are okay, so now we are faced with some decisions. First of all, though, I have to be finished with the chemo for one month before the first surgery.

The first surgery will be a literal slice across my lower abdomen.

The surgery is called a “delay” and it is to “retrain” my blood vessels to work and go the direction the full surgery will require in order for the tissue to live.

So, I would have that first surgery and then two weeks later, the actual reconstruction.

I will be out of work for two and half to three months.

There is a bit of transitioning going on at my place of employment. I basically will be working for another company but won’t have to leave my desk. If you understand government contracts, then you know what I am talking about. If you are clueless about government contracts, then maybe they will be hiring. LOL

Anyway, if I am on short-term disability before I transition to the new company, they do not have to hire me...and why would they? I cost a fortune as far as insurance and medical liability go. Sad but true. Now, if I wait until after I am with the new company, then my insurance will change and I will have a significant out of pocket for this surgery.

Bilateral reconstruction is the one and only surgery of the day for the surgeon.

It also requires a three day stay in ICU. I think I mentioned that before…and was sure that I was wrong about it. No, actually I was right. Three days. ICU. Lots of drugs. Astronomical cost.

So, an operating room for 12 hours followed by a 3 day stay in ICU, well, you can easily see why I need to have this procedure AFTER I have met my out of pocket for the year.

I met my out of pocket maximum a couple of months ago... For those who don't know, this means anything else I have done, outside of office visit co-pays, I am not financially responsible for. Tests, scans, MRI's, surgeries, labs, chemo, etc.

The reconstruction surgery will probably cost around one million dollars.

I will owe 20% of the total cost unless my out of pocket has been reached.

20% of a million is a lot. Now, I’m no math major, but if I am still paying bills from my hospital stays from last year at LESS than 1 million, well, you get the picture.

I had really hoped that all my surgeries would be over and done with by the end of this year, but that just isn’t going to happen.

I am one of those people that use and deeply loves an itinerary…when it is kept to.

So much for plans, huh?

As my chemo wraps up, I probably won’t have anything terribly expensive in 2012, so I am not sure how I will meet my out of pocket in 2012.

Sounds like it would be good news, doesn’t it?

I cannot begin to tell you how much I was wanting this all finished by the end of this year.

Expense free surgery vs. job...that's what it boils down to. There is no way I am saddling my family with 20% of a million dollar hospital bill. No. Freakin'. Way.

Even writing it over and over and over and over and over and over…you just don’t know.

*sigh*

I Have Been To The Mountain Top...

So, Sunday’s sermon was about how doubt does not have to be destructive. How doubt can lead to great conversation, even debate and how it opens up an avenue of communication that may not have been available without having someone ask “why” or “how”. I get that. Of course, the minister was speaking in terms of having doubt in your faith, which I don’t… However, with a little finesse, I could easily turn the sermon on doubting one’s faith into doubting one self, so I did….because I do.

Do you realize that when Jesus spoke with Thomas after the resurrection, Jesus said “Peace be with you”. Peace is the polar opposite of doubt. I am without peace.

Doubt surfaces when things go askew… Big things such as illness, death, job loss…these are the ones that can leave someone reeling in the throes of doubt. Wondering why bad things happen to good people…if God loved us, loved me, then how could He allow this to happen? Infidelity, injury, total loss of financial stability. There is an infinite list of things that go wrong or create doubt. It’s very easy to be a good Christian when things are going well, isn’t it? It’s easy to be a good Christian at church, too. Obviously, the world is getting in our way of being good Christians. Either that, or we, ourselves are keeping us from being good Christians? Well, that can’t be right.

Was I in a better place spiritually a year ago when the diagnosis came? Being diagnosed with cancer gives you two choices: Be strong and believe in God or crumble and blame God. I chose to believe in God. I still do.

The past year has been phenomenal. My family has experienced a deeper love and commitment than ever before. My friends have demonstrated that love “does”…not “thinks about”. My co-workers have cheered me on and welcomed me back time and again. We have made new friends and experienced deep love from our new church family. The opportunities to gather together and rejoice in the simplicity of life and family have grown in number. We are so blessed.

Why would peace elude me, then?

I still struggle with the inconsistencies of people…not life, people. I don’t understand why people do what they do…and I really don’t understand why people do what they do to the people they supposedly “love”. Why are we so quick to pass judgment on other people? So fast to accuse? So ready to assume the worst? How is it that we have so little regard for the feelings of those closest to us?

I have been (am) on the receiving end of such presumption. I have also dished it out on a regular basis. I used to joke that being judgmental is not for amateurs...and I was a professional. That all changed when I got my head out of my ass. I lowered the bar, so to speak, and just tried to see people for who they were. Flawed, imperfect, yet, for the most part, trying to do their best. I spent twenty years of marriage trying to prove to Big Daddy I was right or to see my side during an argument. Now I will list for you the arguments I really needed him to concede my “rightness”:

1.

Ok. I can’t recall a single one. That’s my point. Not one argument has ever mattered enough to stay in my head. Not one, so why bother trying to convince him or anyone else, for that matter, about how right I am? Now, what about you? Can you recall a single argument you have had with someone that all you wanted was for them to admit you were right? How did that work out for you? Did you lose a friendship over it? A relationship? A partnership? A marriage?

Anyway, throughout this past year, it has become increasingly easier for me to speak my peace and then move on. If people want to get wrapped up in what they think I meant or what I said or didn’t say or what context it was in or out of or what was I really saying between the lines, then fine. Go right ahead. I can save you some time, though.

I meant what I said when I said it. I was as clear as possible.

I cannot change anyone’s mind or opinion and I am okay with that. Ah, a different kind of “peace”. That only took 40+ years. Twenty years of marriage combined with forty-some of just being here.

Peace eludes me because I have now seen both sides…”I have been to the mountain top”.

I have seen the strongest and most hardened man break down and sob silently in confusion and fear as a vulnerability crept in and took hold.

I have watched teenagers climb into bed with their parents just to feel safe and protected.

I have witnessed an outpouring of love and the lifting of prayer and petition on behalf of a stranger.

I have felt a tangible love as friends rallied and brought not only food and services, but also comfort.

I have read encouraging words and sentiments from people I thought had long ago forgotten me.

I have listened to God, Himself, tell me He is with me.

So, how can I be without peace?

Because, one year later, life has gone on.

I have seen the strongest and most hardened man seal up his vulnerabilities and mail them back as he regains control of his life.

I have watched teenagers carry on with their young lives because they do feel safe and protected.

I have witnessed an outpouring of praise on behalf of a new friend and church family member.

I have felt a tangible love as friends have gone on with their own lives and yet still included me.

I have sent encouraging words and sentiments to people I thought would like to know someone cares.

I have listened to God, Himself, tell me He is with me.

Self-doubt equals lack of peace and I doubt that I can live in this post-cancer world as productively and happily as I did in the “novelty of cancer” world. Yes, God is with me, still…and He has plans for me, I know.

The question I pose is this: How can I go on with my life knowing there is a peace out there that only lives in my dying?

Perhaps I am a better cancer patient than cancer survivor…

People went out of their way to love me, protect me…

Old arguments mattered no more…

Tomorrow was not taken for granted and today was enjoyed, treasured…

Relationships were honest and forthright…

You mattered, I mattered, we mattered to each other…

Happy memories were made as easily as peanut butter sandwiches…

Kindness was palpable…

Time was my friend…

Time stood still…

I have been to the mountain top and I have seen the glory of the Lord…and then I tumbled down the mountain’s side and stared at the endless sky and wondered if it was all a dream…

Le Soleil

I will no longer take pictures of the sun

Asking you to see what I see
Trying to capture the indescribable artistry of God’s hand is impossible

The way the sun floats in a liquid sky
Dawn breaks where dew has formed
Empyrean colors with no name burst forth

Delicate grandeur exceeds the capacity of my lens
Silhouetted trees, birds, and dwelling places accentuate the landscape and sky
You will never see what I see
Nor will I share your view

Noble glory ascends majestically divine
My fascination never to wane
Exquisite elegance through the silent morn
I cannot capture nor express in word this vision
Hallowed silence

I will no longer take pictures of the sun
As it rises nor as it sets
The colors I see, those hues, pigments, cast
The art of Adams though black and white
Disallowed saturation because he knew
You will never see what I see

My Boy

We sat across from each other, Precious Son and I, as we ate our dinner. We were at our favorite Mexican restaurant enjoying every delicious morsel, as we always do. The whole family was there including my niece, Rachael, and her two children. It was a wonderful dinner with wonderful company and conversation.

The topic of discussion somehow turned to me and my “throwing away of medicine”. Now, before you get all upset, let me explain. When I have chemo, the nurses give me three medicines, plus the chemo. Two of the medicines do something for nausea or my homicidal tendencies or whatever. One of the pills they give me is just Benadryl. Now, Benadryl makes me incredibly sleepy for h-o-u-r-s, so I usually throw that pill in the trash when the nurse isn’t looking. I had asked before what the Bendaryl does and why I needed it. The nurse said that Benadryl acts as an anti-nausea drug. Oh. Ok. Well, considering my taking that pill means I will sleep the entire day away, I always just pitch it.

I had not told anyone that I was doing this for every chemo treatment, but “someone” did tell on me. So, here we were at dinner and now this was the focus of our conversation. Big Daddy was adamant that I take whatever the doctor has ordered for me to take whether it makes me sleepy or not. Beautiful Daughter went on and on about how I need to follow directions and “obey”. (This is terribly ironic if you know Beautiful Daughter at all…LOL) Rachael and Precious Son really did not say anything. I was getting upset because I felt attacked. It’s just Benadryl, people. Lay off! If I am willing to go without it so I can be awake and not sleep a day away, then let me! It isn’t like I am wanting to stay awake to go to work…I am off on chemo days and want to stay awake to be with YOU!

I was becoming pretty upset but eventually the sopapilla came and I was focused on that, instead. LOL As we all sat there eating our verrrrrrrrrrrrrry tasty dessert, Precious Son asked if he could say something. Everyone looked at him and gave him the floor… He looked me straight in the eye as I watched his lower lip begin to quiver and his eyes fill with tears…

“I love you, Mom. I need you. I need you to be around for me. I want you around for my kids. I need you to listen to your doctors and do what they say. There is an excellent chance they know what they are talking about and are giving you the right instructions to help you. I need you to listen. I need you to do what they tell you to do. I need you to be around to love my kids. Please, Mom, please. Do what they the doctors say. Please. I love you and I need you and I want you around forever.”

The tears were streaming down my son’s cheeks. This boy, this young man, my son…moved to tears on my behalf. I was overcome. Tears trickled down my cheeks, as well as Rachael’s and Beautiful Daughter’s. Big Daddy looked at me from across the table, raised one eyebrow, pursed his lips and shook his head as in “you know he is right”. There was no more conversation for a seemingly long time until the waiter came over and asked if we needed anything else.

I had reached across the table for Precious Son’s hand and he gave it. My 6’4” baby boy looked at me with puppy dog eyes and literally begged me to live…doing whatever it takes. So, on July 30th, 2010, I will receive my chemo for the second time this month and then head on home to sleep the rest of the day. You see, I promised my boy…

Short Straw

“Honestly, I kind of drew the short straw.”

That’s how the nurse explained to me how it came to be that SHE would be the one performing my duplex ultrasound. Nice, huh? You see, I had asked if Beautiful Daughter could come into the room with me and watch the test because she is thinking of different career paths she might be interested in investigating. The nurse said, “Well, let me tell you a few things and then you can decide if you want her in here or not”, and then proceeded to tell me the following:

“This is a very intensive ultrasound requiring quiet and you being exposed to a certain extent. I will use a sheet to cover you as best I can, but your daughter may be able to see more than you want her to. This is a very long procedure and you will be in here for over an hour. I don’t mind if your daughter comes in here but you need to know that I’ll need quiet and no distractions because this test is so difficult since we are looking at blood vessels. No one likes to do this test. Honestly, I kind of drew the short straw.”

Always being sympathetic to the pain of others, I replied…

“Sucks to be you, doesn’t it?” And with that, I opened the door, summoned Beautiful Daughter from the waiting room and informed her that she could watch.

So, that was yesterday… This was my appointment that had followed my first appointment to begin working on my lymphedema. You may or may not recall that lymphedema is a common side effect from radiation. It is the swelling and pain associated with the radiation you received, wherever you received it. My lymphedema encompasses my entire left arm from shoulder to fingertips. Swollen. Painful. Remember Violet Beauregard from Willy Wonka? The girl who swelled up like a gigantic blueberry and had to be “juiced”? That’s my left arm. So, my first appointment yesterday was with the lymphedema specialist to reduce the swelling via massage. Now THAT was a great appointment! Anyway, after that was the ultrasound and then there was today…

My appointment card read “CT Scan” with the date and time on it. That was it. So, imagine my surprise when I checked in and they handed me two liters of sodium bicarbonate to drink. I asked for a straw. The straw stood straight up in the thick, gloop. Oh my word. This stuff makes me so sick. I had not asked anyone to come with me because I was thinking it would be a simple CT Scan. How can one person be THIS wrong, THIS many times?

So I took the two liter bottles of gloop and sat down. There must be some mistake. Wouldn’t Dr. Horn have told me so I could prepare myself mentally? Emotionally? No. He knows me. Surprise attacks work best. I sat there looking at the bottles. I read the ingredients. I asked for a straw. I gagged just thinking about it. I asked the check in lady if there had been some mistake. She checked. No, there had not. Ugh. I sat back down. I pinched my nose and took some through the straw. Gawwwwwwwwwwwd. It was awful. I felt like I was going to be sick. I wasn’t. I drank some more but not before a good ten minutes had passed.

I drank a sip here, a sip there. Gagging each time. I could feel my stomach churning and turning. This was not going to turn out well. Finally, after about thirty minutes, the radiologist called my name. I showed her how much I had managed to get down and she took me back anyway. She took the unopened liter of gloop and returned it to the refrigerator. She took me to a little room by myself because she said I “looked green”. I sat there…I sipped a couple more and then she decided that I was probably one sip away from vomiting, so she let me call it quits.

I was escorted into the CT room and told to lie down. I asked if I needed to remove my prosthetic bra and she said no. I laid down and they put the pillow under my knees. The IV was wheeled around so that they could put the dye in. Excuse me? Why did I drink that stuff if you are going to inject me with die? What kind of test is this?!?!?!? At this point, shouldn’t you people have enough technology to do these tests without killing or torturing the patient?

Apparently not.

I was hooked up and knew the needle was not in right. The nurse said “It’s in, but not in good”, so she taped the needle to my arm with about 8 pieces of tape. Now, I am not a phlebotomist, but even I could tell this wasn’t going to work. Sure enough, the needle came out before the test ever began. Upon trying to re-stick me, my vein blew. Shocking, I know.

They tried again which included not only sticking me but also "rooting around" and "digging" for a vein. I then entered the circular machine only to have them pull me right back out because I actually DID have to remove my prosthetic bra. Now, since I have an IV in my arm, that meant they had to take my bra off for me. So, they rolled me, unhooked my bra, rolled me back, ran the bra through my sleeves and then let it dangle from my wrist because of the IV being attached. Seriously. Where’s the hidden camera???

The test is re-started. The test is stopped. I knew it was coming because I could feel the radioactive solution dripping from my arm. The nurses literally ran back in, yanked the needle that wasn’t in, and slapped a blood pressure cuff on my upper arm. They had warm washcloths wrapped around the bottom portion of my arm and began to squeeze. I guess they were trying to get the solution that had not gone into the vein but instead into my body, out. Nothing like seeing the people in charge panic…

My arm swelled up. The IV site was blue and purple and swelling as I watched. I felt pretty sick. I felt pretty upset. I felt pretty alone. I felt like crying, so I did.

This nonsense went on for four veins. The fourth vein was located in my hand. Now, if you have a difficult stick, you start at the hand so you can work your way up the arm. These people had started in my arm and were now trying to hit a vein in my hand. Even I knew this was stupid but for some reason I just laid there and let them because, as usual, I am convinced everyone with scrubs on knows more than I do.

Idiot.

I took it for as long as I could and between my sobbing and their incompetence, I gave up. I looked at the nurses (there were now three of them), and said “I just can’t do this anymore. Please stop.” The last straw was when one of them said, “If this one doesn’t work, we will have to hit the foot.” Uh, no you won’t because I quit.

They performed the CT Scan without contrast…without dye…but with a lot of tears.

They helped me up. They held up a sheet so I could put my bra back on. They escorted me out, apologizing the whole way. In fact, one of them may have even offered to buy me a candy bar from the vending machine. I’m just not sure…

Before I ever got into the truck, I called Big Daddy. I hate calling him when I am upset and crying, but I really had no choice. If I didn’t talk to him, I was never going to calm down and I had to get to work. He answered and was very sweet, of course. He calmed me down and said from now on, they get two tries. If they can’t hit the vein in two tries, we don’t do the test. Deal.

I left the parking lot, called a couple of people, and checked the console in the Suburban for some chocolate. I came on into work and everyone just knew. It was pretty easy to see that I had been crying and was still upset. Of course, I also had the other tale-tell signs of bandages and cotton balls with tape over them. Everyone was very kind and sympathetic, just as they always are when I am having a rough time.

I’m not sure if Dr. Horn will re-order the test or not, but what I do know is that a soldier fights better when they have proper gear…and my veins are not fit for battle anymore and I am down to one arm for needle sticks for the rest of my life.

Some days it just gets very hard to keep going…and then I remember that this isn’t about me or for me. This fight is for my family and my friends. That there are some people out there who really do care about me and love me. Our son sat across from me at dinner last night and begged me to be around for his children... Talk about moving the very core of my soul...

I also have two teenagers watching and making mental notes so that they will know how to battle when their time comes through life’s hardships and trials. If I had nobody but myself, this war would have stopped long ago because I would have surrendered. I would have laid down my sword, organized all my belongings and called it a day.

Interesting how much we will do for the ones we love but not do for ourselves…

Liquid Essence

The lake water is still as the wind blows gently across the top
Creating an almost indistinct rippling
That everyone can see but not everyone does

The water is at the mercy of elements it has no control over
Yet the elements yield to a fear of what the lake can do
And the wind sweeps across

The boat slices through the liquid glass not interrupting the beginning
Yet creating tumult as the end churns forward
And the wet is disturbed

The sunlight glistens on the water
The bodies
The boats
The turtles sunning themselves on the shore

I liken myself to the water
I am cut through and yielded by force
I am sliced across and my wounds glisten

While I watch the sunning of those on the shore
Living, laughing, being
My decisions are made by the motor’s blade
As if slicing through aqueous glass

Reconstruction Consultation June 30, 2010

The appointment time was 9am. I remember this distinctly because at 8:30, I had not even thought of my appointment. Ah, yes. Chemo-Brain in action again. So, I high-tailed it out of work and went to my appointment. I was late. I am rarely late. My husband is late to everything…in fact, he will be late to his own funeral. I, however, will be on time for mine. I haaaaaaaaaaaaaaaate being late.

So, I was late, but it did not seem to have mattered much. Dr. Stewart came in and seemed unaffected by my ten minutes so I didn’t bother to apologize. Certainly did not want to get off on the wrong foot with the guy in charge of my reconstruction, ya know? Anyway, Dr. Stewart was extremely professional and pleasant and shorter than me. Most people are. He reminded me of George W. and Harrison Ford…like a half ‘n half kind of deal. It worked. I liked him. Well, until he said “OK, let’s get some photos”, and then I was like “waaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaht?!?!?!?!?!?!?”

That’s right boys and girls, I, the photographer, had to have her picture not only taken, but taken naked. Well, I had my panties on, but they had to be rolled down. In other words, the only thing covered were my pubes. LOL Nice. The nurse took pictures of me front ways, sideways, the other sideways and then all the same poses again with arms up. Get this. The doctor needed to know how much FAT he has to work with. Hysterical. Never been a problem for me to have ample supply. Now, I weigh less than I have since pre-pregnancy days and the amount of my fat actually decides my new cup sizes. Weird.

Dr. Stewart came back into the exam room after my pictures were taken and sat down to discuss what would be first on our agenda. Considering my “old school” gallbladder surgery which cut diagonally across my stomach, I am yet again, a “unique case”. Ugh. Would not be such a big deal if we weren’t working on a bilateral mastectomy, but, of course, we are. Anything to remain a medical anomaly, you know.

So, we sat down and Dr. Stewart explained a few things…

There are no guarantees.

The tissue could be re-routed and then die, leaving nothing, again.

One side could take…one may not.

The blood vessels may look good on the ultrasound but may not be good enough once he cuts me open thus aborting the whole surgery.

There will be multiple “events” before I am “complete”. Hmmmmmmm.

And the one that stuck in my head the longest…

You will be my only surgery for the day. We will begin first thing in the morning and will not be finished until the evening. You will remain in ICU for at least three days.

What?

Actually, I didn’t say “what”, at all. I was at this appointment by myself and I don’t think to ask questions while I am there. If I had been thinking, though, I would have asked if he meant to say ICU, as in Intensive Care Unit or if he meant to say I would be in a regular, semi-private room with nurses coming in to check on me as soon as I fall asleep. Yeah…that’s what I would have asked…

Apparently, this whole reconstruction thing is a huge deal to the body. The blood return and flow is of utmost importance and must be monitored, well, intensively. Seems like we are asking an awful lot of my blood vessels.

Worst case scenario…the tissue does not “take” and the surgery is all for nothing. Another pretty bad deal would be if my blood vessels are too “risky” and the surgery is called off altogether. Yet another crappy scenario would be if the very first test shows my blood vessels to be inadequate for surgery…or would it? I don’t even know anymore.

Do I want reconstruction? Do I feel like I need reconstruction? Do I feel obligated to have reconstruction? If I were older, would I bother with reconstruction? Is this reconstruction for me or for everyone else? No one can tell there is anything “wrong” or “missing” from me when I am in full gear with my prosthetics annnnnnnnnnnnnd I can pretend to be a buoy in the ocean, if I want to.

So, why all the bother? More tests, more sticks, more needles, more waiting, more surgeries, more recovery, more time off from work, more out of pocket expenses, more, more, more…

Why, why, why???

I don’t know. I went ahead and scheduled the super-duper-duplex-ultrasound for the 13th and then my follow-up with Dr. Stewart is the 21st. Long sigh. I guess we will just wait and see what this first test shows and go from there.

Honestly, I’m very tired just thinking about it…