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Wednesday, February 23, 2011

You are going to put WHAT....... WHERE????

Chemotherapy. Yup going for Chemo............
The injection of poisons in my body to kill what was trying to kill me.  Who wouldn't be scared at that though.
I think mostly just scared of the unkown. No one knows how you will feel from the Chemotherapy, No one knows what side effects you will have and no one can tell you what will happen to you. It was like i was waiting to be sent to the electric chair, I may as well have been waiting for that moment for all I knew.

Everything I knew about Chemotherapy was watching my own mother go through it. More that once. Seeing how sick she got from it was what scared me. I knew I did not want to be incapacitated to my bathroom for 12 hours a day laying on the floor and vomiting every time i moved. That was ALL I knew about Chemo. The idea of bald started to set in a bit, We knew that was a given, no one that had this type of Chemo had escaped with their hair still in their head ( I was bound to prove them wrong though)
So I was set for that, but the thought of not being able to take care of myself let alone my family scared the H E DOUBLE HOCKEY STICKS  out of me.

I dont think i slept well that day before Chemo. I was to anxious, At that time i have never heard of the drug called Ativan. I faithfully believe that a Cancer diagnosis should come with a prescription for Ativan and a case of wine. Had I known this I would have been fully prepared by being fully out of it.

Finally getting into that Chemotherapy room, was intimidating. In fact, they were expecting me... there was already a chair waiting for me with my name on it ready to go......... YIKES.. Like seriously, were they looking forward to me getting injected with poison?

This was where I first encountered ATIVAN!  It was the kind that goes under your tongue. Within a few minutes I started to feel that anxiety leave................ oh heaven! It was awesome.
getting poked was not so awesome, although I must say that the Nurses that work in the Chemo room are fantabulous! They really try hard to do this with no pain getting poked at all.
This was when I started to get really really nervous even with the Ativan.
do they read you your last rites when they throw that poison into you? is there some sort of disclaimer that they have to read you? No pomp and circumstance here, SHEESH! They gave me a bag of Benadryl first and some gravol too, then it was on to the first of 3 types of Chemo

My protocol was FEC T. 3 treatments of FEC ( Florouracil 5-FU, Epirubicin AKA The Red Devil and Cyclophosphamide) and 3 treatments of Taxotere

My first 3 treatments took about 5 hours to do, they had to slow my infusions down a bit so it took a bit longer. all was find until it was time for the Epirubicin to go in, It is called the Red Devil for a reason. Its freaking RED! And I mean read as in Cherry Jello, Raspberry Ice Crystal Light, or Hawaian Punch. ALL of which I could not even stomach the sight of until recently, I could TASTE the chemo in it every time I ate it.
The Nurse comes over to me in basically a Biohazard jump suit, OK. So she has to be biohazarded up and yet they are INJECTING THAT INTO ME??????? What is wrong with this picture?
PANIC PANIC PANIC!!  ALERT ALERT ALERT!!
Now this Chemo is injected slowly while the nurse times it, It is hazardous to your skin if it touches y our skin , you can get a chemical burn from it the nurse tells me.. this does not assure me it is good for me at all.

After she pushed that through and got me set up for the C portion of my Chemo, I had to pee bad! All that saline they pump into you has to go somewhere i suppose. SO Off to the bathroom I go pulling my little friend the IV pole with me.
After I pee I go to flush and what do I see?? BRIGHT ORANGE RED URINE!! Seriously, this cant be good. I come rushing out and the nurse sees the panic on my face and chuckles a bit, " oh by the way I forgot to tell you that the |Epirubicin will change the color of your urine for a while" GEE thanks for the warning I thought I was dying yet again..........

We finally get out of the Chemo Clinic  at 5 pm, I was the last one to get unhooked and sent home. I was not sure how to feel at this time, I was woozy from the Ativan, Cocktail of drugs and the relief of so far surviving my first Chemo.
They sent me home with prescriptions of Zofran, and amazing anti-nauseant and Dexemethesone a steroid that helps relieve nausea and make the chemo work better.

All I wanted to do was go home and sleep for the next year till i was done all of this.
I had a few visitors that night, they did tell me at Chemo that about 6 hours later I would start to feel nauseated and stuff, and BAM, 6 hours later right on the nose i started to feel not so hot, My dad and step mom were over and I had to go to bed, I tool Gravol, Zofran and the DEX and went to bed. with that I actually slept till the next morning. Manny had to head off to work that next morning and my
super super AMAZING friend Suzanne Sera came to pick up Liberty that morning, It was a good thing we had that planned, I could barely get out of bed to get her ready. I wanted to lay on the cool cool floor of my bathroom for hours. The thought of food was already making me want to vomit.

I went to bed and watched movies all day, not eating a thing. drinking minimally. Those drugs do a great job of not making me vomit, but the nausea only took a break for an hour or so at most that day.

The first 2 weeks after that first chemo were not as bad as I thought they would be,
I had less and less nausea as the days went on and actually got out of the house a bit to enjoy some nice weather.
then I woke up one day and I was not ready for what was laying on my pillow.....................


" This is no time for ease and comfort. it is time to dare and endure"
Winston Churchill

Sunday, January 30, 2011

Realizing life would be different for a while

Once I came home from the Hospital I knew life would not be the same. I was grateful that my friends Patti and Johnny came for a visit just hours after coming home. It was comforting to not have to be alone at home the first day. I did not get to see my kids for a few days yet and for that i was actually happy. I really still needed tome to adjust to what was happening to me. I needed time to adjust to having those blasted drains and emptying them myself, and having home health care come and check on me .

I was really worried about how Liberty was going to react when she realized that there would be no more breastfeeding, I really needed to work into getting ready mentally for that.
but when she came home, she looked down my shirt and was a little puzzled for a bit. she had not seen me in a few days and wanted to go do what her favorite thing to do with mom. Oh how I was dreading that moment, not knowing how she would react.  To my surprise, she was ok. she looked, looked back at me puzzled, and got a bit sad, then went and carried on her way.
Kids are so resilient i don't think we often realize that things are not as big of a deal to them as they are to us. She was really ok with it all.

I remember the first time that the health nurse came to change my bandages and check my drains. i went to the bedroom and layed on the bed and my cat Elijah who is EXTREMELY attached to me, sat on my stomach. Now you must realize that this cat is pushing 16 pounds. This was very uncomfortable to say the least, he just would not leave me alone. The nurse could not get to me, we had to throw him out of the room and close the door, and even then he was throwing himself to the door to get in at me.. now it is funny, then it just made me cry that some thing would love me so much and be worried about me so much that he was that concerned for me.

Shortly after  coming home I found that one of my drains did not feel very good, I could not get out of bed one day and had no appetite, in fact I was a bit nauseated. I had a friend  come see me that day and layed in bed with me, i just did not feel right, At about 9 pm that night I went to drain my drains and found things did not look good, I could see pus and it was VERY inflamed at the drain site.

Off to ER we go, Manny stayed home and my friend took me  on out way there i became VERY achy all over my body, by the time we got there my body hurt so bad i could barely stand it, I had taken a percocet on the way there and i got no relief from it, Wait at the ER was horrid, it seemed they were letting people in that were not as sick as I was. I still had no idea what was going on, I have never had this happen to me at all. It was almost 2 hours before i saw a DR.   They had to do blood tests and stuff, UGH The waiting was going to kill me I was sure. I just wanted something to knock me out cause i was so sick.

Well It looked like i was going to have yet another hospital stay. Infection, and IV Antibiotics for 3 days. UGH UGH UGH...... I wanted to be at home in my own bed

This was a HUGE blow to my morale. I could not understand how this could happen.  I did not have time for this unexpected visit to the hospital. I wanted to be at home getting back to normal. and i realized that normal would not be the same again.

I had all of my staples taken out the day before I went to the hospital, and while i was in there I blew 3 IV sites, I got ALL of my drains taken out and while i was unattached to anything i decided to have a luxurious shower with no friends on tubes hanging out.

and when I looked in the mirror to admire my unattatchedness and what do i see............something shiny in my chest...............OH OH what could that be?? A FREAKING STAPLE  thats what....... OMG one got missed and it was ANGRY! I told the nurse right away when she came to put the IV back in, she tried to take it out , the other nurse tried to take it out and then a 3rd came..... i felt like a science experiment. They decided to leave it for the Doctor the next day. PHEW good thing i didn't really have any feeling there yet.
The next day they pumped some morphine into me and got that sucker out! YAY!!

we got my results from the pathology back.. it was better than expected, i was stage 2 B my Tumor was 1 Millimeter from being stage 3 . like days away they said. I was glad i had a bilateral Mastectomy as there were pre cancerous cells in the other side and the lymph nodes on the other side were preparing to have cancer cells in them.... i really dodged a HUGE bullet there

Once out of the hospital i was waiting to find out if I needed Chemo therapy, I already KNEW I would have to but getting that actually OK from the Doctor was something I dreaded. the day of the appointment with the Oncologist, I took Manny AND a friend with me I needed support when I heard that news. and it was as we suspected, Chemo. because of the size of my Tumor and the lymph node involvement Chemo was a MUST.   and I was going to start in 2 weeks from then, WOW, they dont really give you time to adjust to anything before they throw you in do they? In that time it was test after test. Chemo teaching and figuring out what to do with my impending balding head....

I went to look at wigs, I just did not feel it, I was not sure if i really wanted to wear a wig or not. Oh how I did not want to loose my hair. I found some cute hats and scarves, and I figured that would be the way I would go seeming that I would be bald over the summer.

I decided to treat myself to a spa day, I wanted a pedicure, a massage and my hair cut, I wanted to take control over this impending hair loss.

I went to my last Salon I worked at Catwalk Salon and Spa http://www.catwalksalonspa.com/ and I made my appointment. my former bosses Ryan and Levi decided to give me the roil spoil.. i got a FULL spa day in their dime!!  they even made me get my hair colored.... I wasn't sure about that because I would only be holding onto it for like 3 more weeks anyway but im glad I did it I really am... it gave me a day to not think about what was going to happen but a day of enjoying a pampering feeling. it was uplifting for sure and I am forever grateful to them for doing what they did not have to do.

Days later I came home one day to people working my my flower bed..seriously.. planting flowers and making things look pretty. I could not believe it. A friend had arranged me to have flowers donated and arranged people to get the plants planted... I could not believe it,  I really never feel worth for anything like that so to have people do nice things for me, well.. i was overwhelmed, i got a free spa day and my garden done. well that was too much.

One thing I came across was this website http://www.lotsahelpinghands.com/ We decided to set up a site for me because we knew that there was no way I would be able to get things done around the house and we wold need help with the kids and stuff, it was a great tool for us to use while i was going through chemo. I really urge anyone who is going through treatment or any thing similar to use this site to get help. you WILL need it if you have a family to take care of. And it gives people something to do, because you will have people ask what they can do, or  " call me when you need something" and trust me, I did not want to call people to do anything, this gives you and out, give them your site and they can pick what they want to help with!

Now lets get down to the nitty gritty. i wasn't all peaches and sunshine while dealing with those 2 weeks of my life.. it was hard. I was angry. REAL angry People were driving me nuts. telling me I could beat this i will be fine ETC.. Who were they to say I could beat this, how do they know?  People were asking me how my family was handling it. SERIOUSLY?? I DONT KNOW AND I DIDN'T CARE  all I cared about was how I was going to handle this. People were telling me to take time for myself , Like no kidding.... I didn't care to hear that at that time either.
And then there were the storytellers
"well my aunt Mildred who was 845 years old beat this so You can too"  really?? REALLY? you are comparing me to so and so who beat it.. well my mom had Cancer and didn't beat it. So how does Aunt Mildred compare? If my mom who was about my age when diagnosed did not make it.. why are you so sure I will.... do you have a direct link to GOd cause if you do, please tell him to get me off this ride, im done!
Manny was driving me mad.. he copes with things much different that I do. He just wanted me to carry on with life like nothing was going on. I was supposed to do all of the work figuring out the logistics of how my life was going to work while i was getting treatment. He never once thought how I was going to take care of Liberty for the 2 days after my Chemo treatment. I dont think I should have been left alone with a baby while im not sure how im going to feel. If i felt like they said i was going to feel that would not be an option.. so many unanswered questions still. SO many things to figure out. what was going to happen, how were things going to unfold.......And most importantly how was i going to carry on with my life with still so much uncertainty

lets leave you with this quote

"It is not what they take away from you that counts. It's what you do with what you have left."
Hubert Humphrey

I am determined to use what I have left in amazing ways



Sandra

I wanted to leave you with a few pictures of me from this time....
this was before my surgery 2 days after diagnosis at my Belly dance Performance you can see the look on my face, i was not happy at all... i was trying to keep everyting from unravelling at any moment



and here is one from days before my first Chemo. I wanted to Celebrate so we went for dinner and drinks then dancing. check out that fancy haircut!!!


I know this post hasnt been the most mind bending post nor the most engaging, but it was what happened.

Tuesday, January 4, 2011

Just a little off the top please

Waking up was hard. Literally.... it took me over an hour to come out of the anesthetic. Apparently my fan club was getting restless.......... Oh yes! I had a Fan Club..... Had i known I really had a fan club Id have started to charge admission............. What is the going rate for letting people wait for you in the hospital and to try and peek a glimps of the new flat chested you? . Hindsight.......LOL

I had a waiting room full of people waiting for me. Manny of course and FRIENDS!! All of whom cared about me at that moment., My friend Lori was there My friends from Saskatchewan were there, made the trip to be there with me............. All I remember when i came too was that the nurse told me that I had quite the fan club waiting for me............. i really felt loved at that moment

Obviously the firs thing you think of when coming out of surgery was " did they actually DO anything?"
Honestly, It felt like i was out for 5 minutes. I was scared that they found out it was nothing and I went through the anguish of the previous week for naught........ or worse........ it was worse than expected and they sewed me back up........

3 seconds later my thoughts were answered. a blast of pain to the whole chest area. YUP! I was flat
bandaged all around my chest, the tape was pulling  a bit........ It was done........ no looking back now

As i was wheeled up to my room, I was not expecting what happened next. There were 10 people WAITING to see me..... it was amazing. They had to take turns coming to see me, I was allowed 2 at a time and the first person I wanted was Manny. I did not want him to leave. I had a revolving door of people to see me all night. It was comforting to know that i was loved ( or that they were just morbidly curious.LOL Could I blame them?)

It was a HUGE adjustment for me to be "topless"I didnt really care as much s I thought while I was in teh hospital because i was in pain... I just needed the meds to get through the day .

One thing I hate about hospitals is having to share a room. |I really wanted to have a room to myself but there were no privates left in the hospital for me to have, so I had to share. GREAT....... Last time i got admitted overnight for a minor surgery the lady had a heart attack in the bed bveside me at 3:30 AM.. How inconsiderate..........

Well it was even worse........ I had a wonderful Native lady beside me.. she was sweet, and scared to be getting a mastectomy too, only she was getting just one removed, we chatted a bit that night in between her millions of visitors.. this is one reason why i love the native culture so much they truly believe in FAMILY....... and well ............ this lady must have been grandmother to the whole tribe. She had a revolving door of guests too........... that lasted MUCH MUCH later than when Manny was finally kicked out at 10:30 pm. Se we were quiet..... real quiet, Listening to my ipod together, each having one headphone........... yeah.. not much sleep there.......just when the kicked one round of guests out.. another round would show up 30 minutes later. Im wondering if they had a schedule set up around the clock or something...... SHEESH.

I ended up staying 2 nights in the hospital, and ended up experiencing something totally interesting DRAINS! yes yes, the wonderful world of drains. Anyone who has NOT had a drain in their body for any length of time consider yourself lucky. See they did not tell me about these drains that would be in my body.. so not only was i scarred from armpit to armpit but i had long tubes hanging out of me that was collecting some sort of funky fluid that was coming from god knows where. It totally grossed me out. and these drains were not easy to hide.. I swear they were the size of a small dessert plate on the bottom, attached by the tube.... HMMM come to think of it, i should have pined them to my chest and called them my new boobs.... oh yes that hindsight............

It wasn't until I had to get dressed to go home that i finally realized what had happened. I remember crying in the bathroom getting dressed, i was hideous........... who would want to be my friend let alone be married to me anymore.

My body image from then on changed. It wasn't untiI had my reconstruction in September of 2010 that i realize how much that in between me, that boobless, topless me really made me feel.
I did not feel whole
Oh yes I had everyone telling me that i was the same girl, that i was perfectly woman still, cliche after cliche after cliche................ all coming from people who had not been there done that........ I had. I joined that sick club and bought the Tshirt.

Doesn't matter what people say to you at this point.  I was not whole and I was sure I would never be again.... The worst part for me was having showers, its the one time in the day you have to be totally naked with a giant mirror on the wall when you get out. I hated being naked. I am sure it was at least a full year until I cold really look at myself in the mirror. really look at me and be somewhat comfortable looking back at myself.

and sex........... yeah sex...... that was something that did not happen much at all after that...... I just remember looking into the mirror one time we were having sex and that was it, I was done, all I saw was this boobless, hairless THING. i felt sooooo unattractive.

I finally came into my own about the whole no breast thing, but really it wasn't until I had my reconstruction that i realized how much my life was different with out breasts. I was not as ok as I thought i worked myself into between my Mastectomy and Reconstruction.
I guess that means that we do come to a place of normalcy about what you go through, but until you get that reconstruction you really never are the same, Not to say Im the same now cause I am most certainly am not the same person I was before surgery. There is no way you can go through this and stay the same,
There is something that gets at the core of you that changes everything in your life when you have to go through that Cancer Diagnosis.  Small things become very important. I celebrate more

I celebrate everything I can now. things like my anniversary date if my mastectomy, my anniversary date of being done treatment, and I am sure I will celebrate the "Birthday" of the "Twins" as well.

Once we start to celebrate the wonderful things in life, we can truly start to enjoy it.

I really encourage everyone to post on here one thing you will celebrate this week. I want you all to remember those among us who are dealing with a Cancer diagnosis over the holiday season and how much they must have celebrated being alive............ I celebrate being alive EVERYDAY

This week I will celebrate 20 years since Manny and I started dating!

"for a long time it had seemed to me that life was about to begin=real life. but there was always some obstacle in the way and at last it dawned on me that these obstacles were my life."
Fr. Alfred D'Souza