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Monday, December 20, 2010

The week before my Mastectomy was filled with lots of Doctor appointments, tests and trying to get ready for recovering time at home.

I have never gone in for a surgery like this so i had no idea what to prepare.
I had one last Passion Party to do before surgery, it was very hard for me to get motivated to even go and do it. I was not sure I could be in a good mind set to go and sell romance enhancement products let alone drive the hour and half to get there. I loathed to be alone with my thoughts. They tended to wander to not nice places. That fear of the unknown is a very lonely place to be.

My amazing friend Suzanne Sera decided she was going to come with me to do the party. That morning i woke up and went to make a coffee, and when I looked out my front window I saw what looked like glass to be on the ground outside my van. I went outside to see what it was and sure enough there was the back window of my van smashed right in. UGH. The last thing I needed at this time was to worry about that. and how was I going to drive to do my party with a smashed in back window. My totally amazing friend Suzanne decided to drive me there, not only did I have the safety of having company on the drive but I did not have to drive myself. It was great to be able to have someone to hash ideas out with and just lift my spirits.
My party was a SUCCESS .  The sales were tremendous, I looked super cute ( as always) and Suzanne said I was the DIVA I truly am. I was on a high on that drive home, and it was just want I needed before my big day. Its truly awesome how some people come into your life that make a difference.

Suzanne has a very calming attitude. I knew that from the moment I met her. I needed her there when I had my biopsy. While i was getting it done she was attempting to do hypnosis with me, and what I mean by attempting was she was doing it, and my mind was not, I DO NOT relax very well, LOL. as the Doctor was working on me she was trying to work the bad energy out of me and Im not sure if it worked or not, but having her there with me meant so much. Thank you Suzanne for who you are, a most cherished friend ever.

I did not know really what to do to prepare for surgery. The first thing I thought of was to get meals organised while i was in hospital. I wanted my family to be able to eat well. and anyone who knows Manny knows he cant cook a lick. fried  eggs  and plantains are pretty much all he knows. Last thing I wanted was to come home to malnourished stick thin kids. I remember one time  I came home from work late one night and I saw some mess of something on the stove. I asked him what it was, Kraft dinner was his answer, he didn't think to drain the pasta before he added the milk or cheese sauce.... funny thing was my kids actually ate it. Not sure if that says anything about my cooking or not. Maybe they were to scared to say anything.... KD soup anyone???

Now if you remember I was still nursing Liberty at this time, I was diligent on nursing her for as long as i could which really was not much more time, pretty hard to nurse when your getting your breasts removed. My dad and Stepmom were taking her for the time I was in the hospital which meant they had to take her the night before because when you are going for surgery you always have to be at the hospital at some ungodly hour.

The day before surgery i made sure to spend some time relaxing, If you remember that is VERY hard for me to do, but i tried. at one point in this day I knew it would be the last time I would nurse Liberty. Manny and I wanted to go out for dinner and spend some time together that night.

The last time I nursed Liberty was at 4:45 on April 25th 2007. I just remember crying as I was doing it, I really felt like I was doing and injustice to my baby. My goal was to nurse until she did not want to anymore. I was not ready and Im sure she wasn't either. The worst part for me was she had no idea what was going to happen. How do you tell an 18 month old what is going to happen. How do you tell her that the thing she loved to do , and her biggest source of nutrition was going to be taken away from her?  I wanted this moment to last forever. At that moment I contemplated running away or not showing up for surgery at all. Oh how I wanted the ability to keep doing what we loved.

The next day was surgery day. I was so nervous, I wished I would have had a sleeping pill or ativan or something, I did not sleep the night before I mean really how can you when your breasts are going to be taken from you the next day. It was odd to have not gotten up in the night to nurse. Would have been easy to sleep all night, but it did not happen for me.

The wait for my surgery was HARD. its a hurry up and wait situation sometimes. Hurry up to get there then sit and wait your turn. UGH, Knowing things were going to change was not easy. I had alot of friends come to the hospital to see me off, ( or see my boobs off LOL) That was a nice thing to see, having the company and support meant alot to me. I am not a private person, just in case you did not know that yet, so I love having people around me and it was calming to have this support. and on the upside they got to see me in the very stylish hospital gown ensemble. The all probably just wanted to for once see me wear something unflattering and everyone knows that the hospital gown line of clothing is akin to a gunny sack. There is no way you can make either look flattering no matter what you do Im pretty sure that is  the reason tey were there, LOL.

As I got called for surgery , I hugged and kissed them all, a couple of them were teary eyed and I was trying not to be, someone had to be strong here, and Im pretty sure I could not run out of there at that point, besides, there was NO WAY I wanted to be seen wearing that outfit outside the safety of the Hopital. One friend even had to give a light boobie squeeze, she wanted to be the last person to touch them. I felt like i was walking to an execution. I was exhausted and was looking forward to being knocked out, then I would not have to think for a while. My thoughts were taking over me on that walk,
I mean what else can you say on that walk to the OR.."well boobs, it has been nice knowing ya" .

One i got to the OR, I knew there was no turning back. Im pretty sure that the staff is trained in Ninja for just those circumstances, so there was nothing to do but comply.

I was going to wake up a totally different person.

"All adventures, especially into new territory are scary"
Sally Ride

Tuesday, December 7, 2010

If you think that was hard..........

Telling  your kids is even harder....

We were unsure what to tell the kids, There is not alot of information out there on how to talk to your kids about you having Cancer
Do you bring it up casually, "Hey kids, get ready for dinner, and OH by the way, Mom has cancer?"

Not exactly. My worst fear was to scare them that I was going to die, I really did not want that to happen
 I mean really, most people think cancer is a death sentence. Last thing I wanted to do was scare my kids.

We didn't tell the kids for a few days. Not because we didn't want to, but because   we just didn't know what to say. Manny contemplated not telling them at all "mom, why is your hair falling out?" was not a question i was prepared to answer with out them knowing what was going on,  and I wanted to know more of what was going to happen before we talked to them.

2 days after my diagnosis, I got a surgery date. 6 days later!! WHAT?? They still didn't get that I had a life to live that did not have time for this cancer business. but really I was kinda getting grossed out by this mass of freaky cells growing my my breast. I mean really, do you name it? do I have to pay extra for it on a flight? Seriously.  I think ill call my pet tumor Fred.

Not only was surgery coming up but I was still strongly nursing Liberty. Here comes a major decision. What do we do? I didn't know for certain that I was to have Chemotherapy , but we were 90% sure. So i was just going with the fact that Chemo  was going to happen.

I decided that before we made anymore decisions I would like to talk to my surgeon first.
I went in for my pre op appointment and. we had decided that a single Mastectomy was the plan of action. I really REALLY wanted to have both of them gone, not only did I carry the BRCA1 gene mutation, but for vanity reasons I did not want to be lopsided. I think at that point I was more concerned about HOW i was going to look after surgery. This is a HUGE blow when you are focusing on nursing and that bond and nourishment that you are giving to that baby is being TAKEN away from you.

I was not happy with the discussion on having just one breast taken. His reasoning was that there is a higher chance of an infection in the non cancer side when you have both taken at the same time.  I just had this feeling in my gut that this was a bad decision. I needed to have both breasts removed. I had this little fear in my head that I would have to do this all over again. My mom had her cancer return back every 5 years, and have to go through a mastectomy 2 times, 2 separate reconstructions, and all I could think of was her and her battle she fought. I did not want the same outcome for me.

 Now the next thing I did I am not necessarily proud of  but I was grasping at straws. Anger was starting to set in and I just felt I needed to take more drastic measures to get what I wanted. I knew someone who knew someone who worked for the Minister of Health. I had them suggest to me that I should write a letter to him and explain my situation and how desperately I NEEDED to have what I wanted. I explained that i felt unheard for 18 months about this tumor and now it is cancer that most likely has spread to my lymph nodes, and with my BRCA history and I have talked about the risks with my surgeon, I still needed to have it done my way. I did not think what would happen next to really happen

When I went for my second pre op appointment I got asked about the letter by the staff and my DR at the clinic............ In the letter I had mentioned everyone I had been in contact with since the discovery of my pet tumor FRED.
They wanted to know if there was something they did. And really the only thing they did was help me. They listened to  me, and they got to the root of the issue. I had no problems with the DR He is an amazing surgeon who definitely has a passion for what he does, and it shows with how he cares for his patients.

I just needed to be heard. I needed for once to have someone hear me. I had no idea the Minister of health would actually do something about my letter. I never thought I would even be taken seriously and now i had the feeling that heads were rolling over this............. And you know me ( well technically most of you dont, but well maybe by now you do LOL )  . I dont want to rock the boat.but I also didn't  want to die. and by now I just had to do everything in my power to get what I wanted.

They agreed to do the Bi Lateral Mastectomy. I was getting both breasts removed. PHEW I felt like I was making the best decision for me. That was one tactic I had to keep in my front pocket and use as much as I could the next year. It really is a good tool to have, not anyone can make any decision for you, Its yours to make when it comes to your health care. You need to be your best health care advocate in anything you do in your life and come out of that decision with no regrets.

So with that decided and surgery only days away I felt like I was in a whirlwind, Doctors appointments, blood tests, scans and x rays. The most interesting scan was the Bone Scan. They inject a radioactive ingredient into you and you come back alter and get a scan. I felt a little freaky getting injected with it. was I going to glow in the dark after?  And of course my biggest question was I able to nurse my baby? And honestly they did not have an answer for me, no one else they knew was nursing when they had a bone scan. I decided to not nurse that day.

By now it was time to tell the kids, i mean if we didn't tell them what was going on what were they going to think when i came home with no breasts, and where would they think i was going?
"oh moms of to a weekend spa, she will be back on Monday" Yeah I didn't think that would fly, " What breasts, I never had any before, your imagining things"
Yeah.......... probably not going to work.

We had to tell the kids.
And we had to do it now.
 I wasn't sure on what time of day to tell them. When they come home from school? Before they go to bed? I was trying hard to think of when would be less hard on them

We finally decided on after school. we sat them down in the living room. Told them we had to tell them something, and the first thing that shoots out of their mouth is " are you pregnant again?" Oh how I wished that was it. I would do anything for it to just be another baby. I would take having a baby 800 times again over this.

They were crushed. This was way worse to them than a baby,  when we told them I was pregnant with Liberty they told me I ruined their life. Funny now, they all love each other so much.
There was just silence. we talked about possible Chemo therapy. and surgery and  what changes would be happening.

One thing I always was sure of about my kids was I wanted to tell them the truth, and not to really sugar coat things. Kids are smarter than we think they are, they catch on when you tell them lies and half truths, I thought open, upfront and truthful to them was the way it was, that way they felt part of the whole decision making process to through this cancer journey I wanted to show my kids that I thought they were geniuses.

We told them that  I had cancer and I had to have surgery to remove my breasts. We went on to tell them that Chemotherapy will be a possibility and that it will make mommys looks change even more.

My children are old enough to remember what it was like when my mom went through her last rounds of Chemotherapy. The body changing stuff was ok to them. I wanted to prepare them as much as we could for the new bald breastless me.

It was hard for them, of course the first thing they think is that I am going to die. Flashbacks came of the day my mom died. It was a hard day all over again for all of us, But I was bound to show them that I was not going to die.

Life was about celebrating and cherishing, and that week before surgery was packed with cherished moments with my family.

"Life was meant to be lived"
Elanor Roosevelt

Thursday, December 2, 2010

Telling people you have Cancer is one of the hardest things to do.And often it is the people closest to you that are hardest to tell.

Telling your online friends, easy. delivery guy is a piece of cake "Thanks for the package OH and I have cancer"

Closest friends and family.... Id have rather cut of both feet.

I would say the hardest person to tell was my cousin Melissa. We are like sisters. Neither of us have a sister so we kinda made ourselves sisters.

Melissa's mom was my moms sister. Aunt Catherine was diagnosed with Breast Cancer a few years before that. ( see the pattern of family history) And I actually found it easy to tell her, even thought i had to tell her online. I just could not bear to tell Melissa, I had to have her mom do it. I just knew that when I told her that we would both be sobbing bowls of Jello. I just did not have it in me after the day I had to even tell her. Melissa remembers getting the phone call and just yelling " NO NO NO NO " and bawling. She prayed , for my strength, for my families strength, and for Liberty, I was still nursing Liberty and planned on nursing for as long possible, and we were not near done  nursing.  Even just talking about her doing that makes me want to cry.  I don't want people to be sad, And I guess that is one reason I really didn't want to tell anyone, I don't like to be the bearer of bad news.

Pretty much everyone else close to me found out on the phone. I just remember laying in my bed making phone call after phone call. I could not even utter the word cancer

I think the words I most used was " So I got my results back.... Its not good"  NOT GOOD.. That could have meant anything, but everyone knew, they all knew what it was.

Now Im not an overly private person, and in my mind I was trying to make a list of who to tell, This isn't like making a birthday list and calling people to invite. "Hey, its Sandra, Im having  Cancer, wanna check it out?"

My very first phone call when I got home that day was to my best friend in the whole world Sherrylynn.
She knew in her gut when she saw the lump, but did not want to break my bubble of denial and safeness . She Knew it was coming and was not prepared at all. She was pretty pissed off. She was Pissed off because someone else broke that bubble for me.
She knew nothing she said to me would help or get me through it, It was going to be all up to me. She was terrified for me, not because she didn't think I could do it,  But because she knew it was going to be hard for me and she could neither help nor fix it.

There is no way you can really prepare to hear those words, Nothing can prepare you to hear cancer.

The absolute hardest to tell will be my kids..........

"All adventures especially into new territory, are scary"
Sally Ride

Wednesday, December 1, 2010

The day I got my diagnosis as a day like any other day to start out with , I had a friend of mine Lori take me so Manny could stay home with Liberty ( a very wise decision her being there would have make it so much harder.) Off to the Hospital we go, and really Im in good spirits cause I KNOW that this has to just be nothing............... Wait......... Did you hear that?? there is that DENIAL creeping up again.

The doctor was running behind as per usual. Do Doctors take a class on how to be late for patients?
One way to keep us on our toes is to be SUPER DUPER late when you are giving out test results.
I was chatting it up with my friends, Joking about the recent trip to Vegas, Totally oblivious to what was about to happen. Could I have been any more dense..GOSH!

Time comes to go in the room,  There we sit, my Friend Lori, the Doctor, a nurse, and ME He asked how my biopsy site healed and i said it was great, it looked fine.I laughed about how easy the healing of the Biopsy went. After all they were just going to tell me that I had a Cyst or Fybroid or something that needed to be drained right??

"well the results are back. Indtra Ductal Carcinoma.... this means its Breast Cancer"
I instantly fell over on loris lap and exclaimed " I cant do this, i have to go to Vegas in a month"

why is it that when the world is crashing around the dumbest things pop in my head?? I could have said
"ok, whats next?" or ARE YOU SURE?" or " Alright guys, wheres the hidden camera?"

No I state I have to go to Vegas, LOL,, SHEESH

The Doctor states to me that Because of where my tumor sat, I am not a candidate for a Lumpectomy, I needed a FULL Mastectomy on that side.  Way to knock the wind out of me............. People know me for my BOOBS. I cant just have it removed! Didn't he realize that one of my defining features of me were my breasts? "You know Sandra, you 'memer  the cute MILF with BIG gazongas?" Yeah im totally not exaggerating either. Those puppies were HUGE  Triple E cup size baby! One breast was bigger than my babies head. Not everyone can grow them like I did. Not to mention they were still nourishing an 18 month old baby at the time. That alone was a defining thing, They were working boobs. they belonged to my baby, and I was very much attached to them.

He also stated that my other breast would eventually have to come off because of my BRCA1+ Gene Mutation, but he did want to do that at the same time because of higher chance of infection

All of this is way too much to take in, I was in that Breast Health office for over an hour. having information thrown at me like cream pies at a circus. Mastectomy SPLAT. Possible Chemo SPLAT
Possible Radiation SPLAT. Cancer SPLAT Cancer SPLAT
It all just got piled on me till i felt like a bowl of Jello. Total Information overload.

He wanted me in for Surgery as soon as possible which meant by the time I left the office, I had appointments for EVERYTHING Ultrasound, Bone Scan, X rays, Blood work, pre op. WOW,

I was numb Right at that moment I wish my husband was there with me, I love Lori, but I needed my Husband and i really really REALLY  wanted my mom. No I NEEDED my mom.

I honestly could not put a thought together on that drive home, I called Manny on the way home and told him over the phone. Seriously.........Why I could not wait the 10 minutes to get home and tell him face to face is beyond me. I felt like a zombie ate my brain.

It was very hard for me to walk in the door of the house when I got home. I was not sure how Manny was going to react.
I walked in the door, and he looked at me, and he was holding LIberty, he grabbed me and hugged me tight and SOBBED just all out sobbed. He kept saying I love you I ove you I love you love and over.

At that point I really felt like i wanted to crawl under a rock and stay there, fly away somewhere. Maybe I was dreaming? This for sure could not really be happening to me at all could it?

The rest of that day I just sobbed.

"Not everything that is faced can be changed. but nothing can be changed until it is faced"
James Baldwin