Fare Thee Well

After getting sloshed on two bottles of Magnesium Citrate, I'm not sure how coherent this blog will be this evening. I told myself I would set some time aside this evening to do something very strange. More about that in a minute.

I have been UNBELIEVABLY busy. Trying to get my life in order before going in to the hospital in the morning for two weeks! Two Weeks! Okay, work is settled. Talked to mom tonight, gave her phone numbers and all the information I know at this moment about my youngest and being where at what time with whom, etc. etc. I had the last meeting with the last doctor this morning. The Urologist. Up until this point I thought winning a beauty contest was required to be on my surgical team. I guess that's not the case.

I go in tomorrow morning to have the blood supply to my pelvic region cut off. It's called a urinary embolism. Apparently its so painful they have to keep me overnight to try and control some of it. sounds fun, yea?

so anyway, tonite I need to say goodbye to parts of my body they will be taking out in two days. Apparently I will be out of my head tomorrow night and unable to bid them a fond farewell. I don't want to grieve these parts when they are gone, and they have served me well up to this point. So here goes.

Dear Cervix,
I forgive you for allowing that sneaky cancer to take you over the way it did. I forgive you for not warning me until it was too late. I know that you are not to blame for letting stress break down your immunity like that, it was a team effort. I do want to thank you for heralding the arrival of my beautiful girls.

Dear Cancer,
I still harbor some strong feelings toward you, but you are also a part of me. I want you to know that I respect you and now it is time for you to go. You are not welcome in my body and I expect you to not return.

To all my other wonderful parts,
Thank you uterus for carrying my babies. Thank you bladder for letting me hold it longer than I should've. Thank you vagina for all that fun! Thank you rectum for haulin' out the trash. I appreciate all of you and bid you a fond farewell!

Peace & Love, Susan

Happy Post Thanksgiving

I am sitting at work, eating my leftover Thankgiving goodness, and catching up on my blog reading. Everything I read is making me cry; Celine at Bonjour is sharing a personal moment of utter joy, Aidan at Conjugating Irregular Verbs shares my love of Thanksgiving and tells a wonderful story about Thanksgiving in France, Sara in LePetitVillage started it all with her Thanksgiving story.  I feel like I'm on a roller coaster with all these ups and downs. There must be something in this turkey that makes a person weepy.

As for me and my family, we had a memorable Thanksgiving. It was just the five of us, and we laughed and talked and laughed and I wish someone could've secretly recorded the entire dinner for me to watch over and over. It was that good. A lot of not so brilliant life changing events have happened to us since the last time we sat down to Thanksgiving dinner. We still found much to be thankful for as we took our turns going around the table expressing our thanks to God and one another.

I do need to update my pre-surgery events. I met with my gyn oncologist again on Wednesday. I told her I did not want a particular anesthesiologist for my surgery. He was my husbands anes.on his surgery and I did not like his style. She gave me my directions of things to do and not do before being admitted on Nov.30th. Then I went to the hospital and had a pikk line put into my arm for the surgery. This is a deep vein i.v. they put on the inner (very tender) part of my upper arm and it just sits there until surgery. I had one for chemo, so I knew what to expect, but the tape they put over it itches like crazy, and I can't really take a proper shower because it can't get wet. Then, I met with the ostomy nurse. Thankfully I went fully prepared. I had armed myself with knowledge and youtube videos, so it wasn't an emotional meeting. We were able to talk about the particulars without any emotion getting in the way. (YES, score one for me!) She marked my fat roll with two black X's and covered them with yes, more tape.  She also gave me dvd's to watch, samples to play with, etc.

So today I am at work, cleaning out my office. I've dug up a cassette tape (yes, i've worked here for more than 22 years), a business card when our area code used to be 409 instead of 936, and a picture of my family from 2003 that is a definitely keeper.

This afternoon, I go home and spend the afternoon with my friend photographer while she captures more memories with my gorgeous family.

peace,
susan

The wonders that you see

This is for Grace, Kaitlin Gail and Margaret.

Although you see the world different than me
Sometimes I can touch upon the wonders that you see
All the new colors and pictures you've designed
Oh yes, sweet darling
So glad you are a child of mine

Child of mine, child of mine
Oh yes, sweet darling
So glad you are a child of mine

You don't need direction, you know which way to go
And I don't want to hold you back, I just want to watch you grow
You're the one who taught me you don't have to look behind
Oh yes, sweet darling
So glad you are a child of mine

Nobody's gonna kill your dreams
Or tell you how to live your life
There'll always be people to make it hard for a while
But you'll change their heads when they see you smile

The times you were born in may not have been the best
But you can make the times to come better than the rest
I know you will be honest if you can't always be kind
Oh yes, sweet darling
So glad you are a child of mine

I love you,
Mom

The Bag or the Box

I took my next step today. I've been putting it off until I knew for certain that I was ready. Well, as certain as I could be. I went online and started researching ostomies. How to care for them, how to change the different appliances, what (exactly) they look like, etc. After reading everything I could find, I then went on youtube to see the real deal. My first video was a man showing how he changes the wafer and cares for the skin around his stoma. A stoma is the part of the intestine that protrudes from your stomach. It was very difficult to watch and I did break down knowing that in less than two weeks time I would have my own stoma. Then I came across this video and it made me feel stronger.

So my plan is to continue watching videos, reading, and looking at real life pictures until I am desensitized. I have watched about 15 youtube videos already and I am pretty confident that I understand what is ahead of me. Of course no one can predict which stumbling blocks or hurdles will come along, I will just have to jump those as they arise. Several people I have spoken with say that it takes about a year to get used to these things. I have to tell you that I am determined to shorten that period. From all my research, the biggest hurdle is the patient's mindset. I am ahead of the game because I know its coming and I am educating myself before the fact. 

So tomorrow morning I am driving in to Houston again for my third opinion. I don't expect the opinion to change, but I am going to use this doctor as a resource for making sure I ask all the right questions of my own doctor, and so he can educate me further.

Then Wednesday morning I meet with my own doctor again, just for communication purposes and getting more questions answered. Then I have a pik line put into my left arm, and then I meet with the ostomy nurse so she can mark up my belly for the surgery.

THEN I get to enjoy four days with my family. I am going to cook turkey, the best damn dressing in the world, mashed potatoes, green beans, sweet potato casserole, pumpkin pie, pecan pie, and cranberries. We are going to take family pictures either Thursday or Friday. We are going to laugh and have a good time and I am going to relax and soak it all up.

peace out,

susan 

Thanksgiving Present

My friend, A., and I whip this song out every year about this time. There aren't very many Thanksgiving songs and this one makes us laugh every time. We will listen to it every day, sometimes twice a day, until Thanksgiving. When we come back from our holiday, we will then begin our Christmas Music Season. That has always been our routine. NO CHRISTMAS MUSIC BEFORE THANKSGIVING. EVER! THAT'S OUR RULE.

With all the hoopla, I almost forgot this year. I just turned it on for us and we both wanted to cry, but we laughed at the appropriate parts anyway. :)

I am glad I will have two days of at work Christmas Music to listen to with her; we can get all our favorites played in that time, no doubt. :)

Peace Out,
Susan

Small delights

I went for a second opinion yesterday. I drove to Houston with hubby in tow, had a bag full of snacks and electronics to keep us busy. We used valet parking, as its free the first time, and felt like we were walking in to a five star hotel (except for the gloved strangers touching all your private parts).

We waited for about four hours to actually see a doctor, but we didn't mind too much. Everyone is there for a reason, everyone has their own story.

This doctor completely agrees with my current doctor.

I will be getting a third opinion on Monday. I'm nothing if not an eternal optimist.

So here are some small things that have delighted me recently:

• My Aunt, who lives in ARKANSAS, offered to drive me to MD Anderson yesterday. How generous is that? VERY. I declined, but was amazed at her generosity.
• My mom called me last night, just after I turned off the light for sleep, and said she would be coming for the surgery. I didn't even know I wanted her here until she said she would be here; moms are good for knowing things about you that you don't even know yourself :)
• My husband made me laugh several times yesterday. Thank you God for our ability to still laugh and feel joy.
• My nephew bought me some super duper soft leopard pj's. Button down top and drawstring pants. They fit purrrfectly.

I have a very busy two weeks ahead of me. I am looking forward to a stellar weekend. I will be enjoying my family, enjoying a trek to H town, and appreciating what I have.

Peace,
Susan

I'm C R A Z Y

I feel like a crazy person. One minute I am calm and can handle anything they throw at me, the next minute my mind splinters.

It is so interesting to me the way my mind works, or doesn't, whichever is the case. I was putting dishes away from the dish rack and a fork had one drop of water on it. I instantly think "the fork is crying". Weird stuff like that. I have more examples, but they are rather macabre and I know some of my family is reading this, so I won't share them. Suffice to say, my thoughts are a bit effed up right now.

Today I go back to the scene of the crime. The doctor who gave me the bad news exactly 7 days ago. I wasn't really in any condition to ask all the questions I needed to, and my husband is going with me.

I have all the faith in the world in him. I threw away my daughter's tooth, by accident, on Saturday. She had to write the tooth fairy a note, explaining how her mom has lost her mind, and dad got on the tooth fairy hotline and took care of the entire thing. It would not have happened without him. That gave me a HUGE amount of Peace =)

I got back from the doctor a short while ago. It was a good visit and King D. got all his questions answered. She even drew us pictures. He kept the drawings. Not sure why.

Tomorrow we go to MD Anderson for a second opinion. It's going to be a long day. I plan to pack snacks, vizio tablet, and an ipod.
Maybe I'll take some pictures for tomorrow's post.

Peace,
susan

Peace in the City

Well after my eventful week, I longed for the peacefulness of the city. (kinda tongue in cheek)
My local soul sister and I had made plans for a breakfast in the Heights at our favorite grits place before my news blew me away last week; we decided to stick to our plans. Okay, I don't like grits, but her and my dad agree they have the best grits in H town.

Waffle, Eggs, Bacon, Latte...yummy.

I love Houston and I love finding new places to eat. I think this one was found while searching for the Onion Creek Bar & Coffeehouse....can't remember exactly, but it was a perfect find.

We then drove over to the park....the park I wanted was blocked off due to some parade about to begin, so we headed to Discovery Green. We staked out a grassy area, right near the water. It was beautiful, partly cloudy, and we listened to music, talked, read magazines, people watched, etc.

Saturday Morning Yoga in the Park

Then I texted my daughter, who lives nearby, to come join us because the day was so beautiful. She brought a sack lunch and we ate and talked.

Isn't she Beautiful?

It was a beautiful day in the park. Would've been more beautiful if the parking cop were following our New Life Rules. But alas, he was not even aware of the changes and gave me a parking ticket anyway. So instead of costing 50 cents an hour, it cost me $75 an hour for parking in a commercial zone. What can I say? All those signs were confusing. I got my receipt, put it on my dash and thought that was all I had to do.

We decided we liked this building best because it reflected the sky and clouds...kind of merging with the scenery.

beautiful bldg

That was my day. I hope your Saturday was good too.

Peace,
susan

11.11.11

As mothers, we have experienced the humility of completely losing our modesty. Whether its having to spread eagle for a pap, or having a stranger insert their fingers to see how far the cervix has dialated; it can be quite awful.

Have you ever heard of brachytherapy? When you have cervical cancer, after five weeks of radiating your pelvic area, they often do brachytherapy. In laymans terms, they fill your vagina with about a dozen ball bearings. Each ball bearing is attached to a long tube projecting from your vagina. They insert these while you are under anesthesia, when you wake up they roll you to the radiation tomb and hook each long tube to another long tube that will inject radiation directly into your cervix. It's loads of fun. (I actually found an image online, but decided against sharing it with you. You're welcome.) They do not put you under to pull these ball bearings out of your vagina...just sayin'.

Okay, so all that is pretty harsh. You get used to people seeing your bare ass and strangers hands in your stuff. Whatever, you have cancer you don't care after the initial shock of it all.

Now, all that being said, today was a whole new level of awkwardness and ugh. Today , it went like this: drop my pants, kneel in the prayer position, rrrrrrrrrrrrrrr as the prayer chair turns me on my head, then have someone shove a flashlight up my bum.
Besides the obvious, let me tell you what I found hilarious about the entire situation. The doctor leaves the room, the nurse has me drop my pants. She then covers my wide white arse with a paper sheet. She then taps on the door, the doctor reenters, and he then tears a rip in the middle of the sheet to get to my behind. It makes me laugh just typing this...I read that in France, you don't even get a little modesty paper vest when you have a mammogram...I get a butt sheet with a rip in the middle. Take that France.

New Life Rules

Did you know that having one tragedy in your life does not prevent other bad things from happening to you? It's true. It's totally bogus. I think it should work like this: If you have cancer, you are automatically exempt from car wrecks, gunshot wounds, stubbing your toe, or having anything bad happen to you or any other member of your family. Who's with me on this?

My gyn oncologist called me this morning to say the latest she can do the surgery is Dec.1st. This is because she will be on holiday the last two weeks of the month and she does not want me to be in the hospital while she is not in town. My second opinion is scheduled for Dec.12th with MD Anderson.

I started calling everyone I know and several I do not know. I left a message for the doctor at MDA I have the appointment with and asked her to call me back. I called my sister in law, who used to work in the medical center environment, and then I remembered that her son is actually a lawyer who specializes in health law. Bingo. I am currently awaiting a phone call from the chief of gyn oncology of the methodist hospital in Houston. Also, a woman from MDA returned my call for Dr. Nick and she said there is an opening on Wednesday, she would check with scheduling and call me back.

So now I am sitting here, waiting for that phone call that is going to get me some quicker answers.

Of course all these details and phone calls and coordinating information with different people isn't making me better and it isn't making me worse. But it does feel like I am doing something instead of sitting helpless.

I had a talk with God this afternoon (fyi he doesn't mind if you're on the pot or not), and asked him to make sure all this coordination comes together for the benefit of my health. I asked him to let me finish raising my youngest. He reminded me that he has already made all the promises he is going to make and they do not include getting to see your children grow up. and IF I do not get to finish raising my youngest, He will take care of her.

Door No.4 Please

If he knew, when we met, that we would be going through this 23 years later would he still choose me?

This question crossed my mind and it is a question not worth asking, really, he knows what I want to hear and he is good about saying the important things.

He is pretty scared. He is very strong. He knows how to tuck our daughter in at bedtime.

He is not fully recovered from his surgery and he pressures himself to get better faster. I don't think it works that way, not with the brain.

So, to spell it out, the cancer has returned and it seems kinda pissed. Although two doctors read my petscan and told me all was swell, the biopsy told a different story.

I went to the doctor appointment alone. It was one of those things where she called me that morning and asked me to come in. I knew it wasn't good, but I didn't know how bad it could be. I thought, okay, I got a little cancer back, I'll just chemo and radiate again and finish it off. I've done it before, I can do it again. Well, turns out you can't do it again. They gave me the full allowable radiation the first go around and I'm not allowed to take any more. So she gave me three choices, which weren't really choices at all. 1) take chemo (but it's ineffective) 2) have a pelvic exenteration or 3) die within a year.

Uh, I'll put all my money on what's behind door #4 please.

If you don't know what a pelvic exenteration is, go look it up, cuz the details are too horrific for this particular post. I didn't even know they existed.

I live near Houston, Texas. People come to the medical center, from all over the globe, because we have the best doctors on the planet. MD Anderson is the cancer expert melting pot of the world. I have an appointment with them on Dec.12th to get a 2nd opinion.

Oh, turns out if you are gonna give someone the worst news they've ever heard, wearing lilac is a good idea. She had on her scrubs and they were the most beautiful lilac color, even her name stitched onto her front was another shade of lilac. It seemed to be something my mind was focusing on through the entire conversation. I tried removing myself from my body and viewing the conversation from afar; seems like a good skill to have at a time like this. No luck.

I will keep posting all my thoughts, scary and brave, while I am going through this. It's going to get graphic but I won't apologize. My not knowing pelvic exenteration exists is unacceptable; especially when I have cervical cancer and still didn't know it was a possibility. I did a lot of research on cervical cancer and this did not come up. I understand it is a difficult thing to talk about, and it may be embarrasing to some, or TMI, but it is a reality for a lot of people, most likely myself included. If I have to be a resource for other women in the future, I want them to know what's going to happen for better or worse.

Peace Out,
Susan

Sounds pretty heavy. Weight has nothing to do with it.

I have the need to write, write, write. Get as much as me onto this virtual paper as I can. I feel like Michael J. Fox in Back to the Future, looking at a picture of myself as I slowly disappear. Slowly becoming irrelevant, my hands are transparent. I have to quickly make sentences into something substantial before I am gone entirely.

What will I leave for my daughters? My amazing, smart, beautiful girls. Words are not enough. Have I given them everything they will need? I've given them each other.

Oh how I do not want them to be sad. Have I given them enough good memories of me? Will they remember me being happy? laughing? loving?

Will they be able to feel me when I'm gone?

I think the hardest thing about a mother dying is not being able to hold her children and get them through it; not being there when they need her most.

Harriet Tubman said "Every great dream begins with a dreamer. Always remember, you have within you the strength, the patience, and the passion to reach for the stars to change the world."

An old friend told me "You did grow up and change the world. You raised three incredible daughters and that is an amazing contribution to this world."

I have given them each other.

Grieving

My last Texas autumn. My last Texas Halloween. My last Texas Thanksgiving. I look at everything as my last Texas "fill in the blank" now. I've given myself permission to grieve for what I will be losing. It doesn't mean I don't want to move, it doesn't mean I'm second guessing myself. It just means that after 23 years here, I need a moment to grieve.


Even if you aren't from Texas, I am sure you are familiar with the pride that comes from being associated with this big, beautiful Lone Star State. If you aren't from Texas, you have probably been annoyed by this pride once or twice in your life. We Texans love that.


I love to watch MotoGP racing. It's an international sport. One of my most favorite things about watching the race is the announcers announce that Rossi is Italian, Hayden is American and Colin Edwards is Texan. Oh yeah.

The Texas Tornado - Colin Edwards

As I wait for my husband to tell his sister that he is moving, I am adding to draft posts, so many of these are over the course of several days and weeks. This is my excuse for their lack of continuity.


So this morning on my way to work, I was mentally listing a few things I will miss.
I will miss you Java Java.
I will miss you House of Pies.
I will miss you Mucky Duck.
I will miss you Courthouse Square.
I will miss you Houston skyline, you are so beautiful to me.

Houston View from Houston House

When I come around that last corner heading south on Hwy 59, I feel excitement right before the skyline spreads out in front of me in all its glory. I really can't get a picture of that sight, I am always driving and the corner is off camber. I love that sight, but I don't want it to be the last one I ever see.


I cannot actually list the people I will miss yet. That is too difficult. Several times, seemingly out of nowhere, I get a sharp stabbing pain over a person I will miss. Different people at different times. Perhaps I will write about that later, or maybe I will not be able to write about it. We will see.

In for a penny, in for a pound

I've been writing about leaving for quite some time now, I just haven't been able to publish until my husband told his family this morning. So I have an overload of posts today.

I set him up on Skype this morning with his sister. Although we've had skype for about 2.5 years now, it is his first time to talk to anyone (he still has a flip phone, BUT he does text!). So this morning, I had him brush his hair and put on a black t-shirt so get ready for his debut. :) He gave her the news and now I can share all these thoughts that have been racing around in his head.




My mom called this morning. Dad told her to read me the morning's news headline. Turns out Tampa Bay is 98th out of 100 as far as job growth goes. Houston is #1 on the list with over 16% growth.

Well shite.

Mom and Dad have the same concerns that David and I have. We are concerned and pray everything will work out for us. I reassure mom this is what we want to do and we aren't jumping in without a thought. We have even discussed an exit plan if it doesn't work out for us.

But we are boldly moving forward with the move. In for a penny, in for a pound.

Say the thing...continued...

I just read a lovely post from Ms. Kindersleyclick here to read and it reminded me of some things:

When I told my friend, D, about leaving he says to me, "you know the thing I hate about your leaving?" I say, "what's the thing?", He says "I've always anticipated getting to know you better. Now I know I've wasted all this time." It was such a lovely thing to say.

My friend, K, she now hugs me every day at work. It's like she is saying the same thing, but with hugs instead of words.

My friend, Mona, came by today to schedule a Houston morning getaway, to include one of my most favorite spots: Java Java. Which is funny because I just wrote a post yesterday (yet to publish) about Java Java being one of the places I am going to miss. And what is better than having breakfast there next Saturday with one of the people I am going to miss most? I can't think of a thing.

six weeks and four days left

Taking my Memories with me.

Taking walks through the National Forest with my girls.
Driving up to the family cemetery, walking and talking about the people buried there and how they are related to my girls.
Friday night half time shows; watching my older girls dance and lead the band while trying to keep tabs on their little sister in the stands.

hyped up on concession stand food

These are the memories I will take with me to a new place. After I put them in black and white, I can see the most important part of the memories are my girls. The places are just where we happened to be at the time.

in the woods, we stopped to play

I am loading up the family and heading East. I am both excited and terrified at once. I am excited about a new place, about being close to my parents, about a new beginning. I am terrified of failure.


My biggest fears lie with my girls. Shocker, I know. My youngest has just started fifth grade. That age where you cement your friendship with your best gal pals. That age when your core confidence sets in stone to rely on later in life when your environment is less than ideal. She has a very large support system here, a very large cheering section. Teachers, teachers aides, girl scout leaders, my co-workers, they all believe her to be quite extraordinary. They all know her name.


My two oldest girls have been going away to school for the past 2-3 years, but they always had a place to come home during the summertime, winter break, various weekends. Now I am pulling up home base. My head tells me they are 22 and 20, it's time for them to fly on their own. My heart tells me I am pulling the net out from under them.


I am excited and terrified.