Double Laser Beams all the Way

Let me present to you Laser #1 and Laser #2.

Well today marked the beginning of my next Chapter in my journey through breast cancer. This was no Star Wars ordeal, but rather a light show.

This morning I had an appointment with my family doctor as per ordered by my Social Worker.  We discussed ways to help me cope with the emotional side effects of dealing with cancer. Quick and easy, I was out in no time.

Next, I ventured on over to the Cancer Clinic with my Ellie.  I was scheduled for my first radiation appointment at 2:30 and a Cat Scan at 3.  The first picture exhibits the cat scan and the second picture resembles my radiation machine.  So I went to the main desk and informed the nurse that my appointments were rather close (and knowing how long the wait times are) and I asked her if it was possible to complete both within the given time.  To no surprise she told me that one of the three radiation machines went down today and that they were running very far behind and they would have to figure something out. At this point Ellie had gone to her scheduled appointment and I was left alone. I told her to meet me in the radiation waiting area when she was done.  So I sat down in t the waiting room with all the old men for about half an hour, when the nurses finally called me up and said that they were going to send me to my cat scan first and then come back for my radiation after because they were so far behind.  So off I went into the maze of a hospital basement and found my way to the xray department.  I grabbed my number, had a seat, and waited once again to be called up. Twenty minutes later I was called up, my information was process and was told to sit and wait AGAIN. So back to my chair I went, I watched several emerg patients stroll by in their gernies (sp?). Another twenty minutes later I was finally called into what appeared to be another waiting area.  Are you kidding me? What a joke? I was just in the room before the room..gahhhh. So here I sat with a mother and daughter duo and we began talking up a storm.  It turns out that the mother has lung cancer and the daughter was there to support her. Yadda yadda yadda. We both finally get called in.  But, oh wait, I was teased again.  I was brought into this locker sized room where a nurse started a pic line in my arm for the dye to be injected.  She told me I had to wait because Emerge patients were in there....shocking, I had to wait again. Ten minutes later I finally get into the cat scan room.  Now imagine this, the wall was all made of wood, very similar to the wood at one of the bars in Caboto. Also, the actual Cat Scan machine had this spinning, glowing lights on top...I called it the disco ball. As the nurse injected the dye into my pic line and rolled me under the circle she told me that one of the side effects of the dye was a very warm fuzzy feeling all over my body and often times patients feel like they urinate themselves, when they actually dont.  Well sure enough this is exactly what happened. I found it rather amusing. After all that waiting, the actual Cat Scan took a mere ten minutes. All done and ready for radiation. 

As I made my way back through the hospital maze, I kept thinking "Ellie must be wondering where the hell I went." On my way back to the radiation center, I was suddenly halted by this youngish guy who yelled out "Jillianne is that you?" Obviously I respond yes. "Oh there you are, we were looking for you." Well moron, I've been sent on an Alice in Wonderland adventure all across Met Hospital...sorry I had to vent. So he tells me to follow him and he would let the radiation team know I was there. Ok, so if you thought the locker room was bad, I was now placed in a breakfast nook waiting area. It had 4 chairs, no magazines, and a lot of stinky old men.  Seriously!!!! I waited, and waited, and waited. At this point I was so sick of waiting, I could feel the tears filling up in my eyes.  Just get me the fuck out of this place already. So after another extended wait time, a nurse comes and says "Okay, we need you to undress from the waist up in this one room and when you're done, go back and have a seat in the small waiting area." Not only was I have naked in the gernie gown, but I had to go back to the nook with the smelly men....now I was annoyed. Another long wait, I finally was called into the radiation room.

Laser beams away!!!! The whole process lasted approximately 15 minutes and besides not being able to move, I felt nothing. I was warned that the bad boobie would become red and I will be fatigued, but what can you do.  Finally, I could leave. The nurse asked if I had any more questions and I quickly responded "Can you please help me find my way out of this place? It's like a maze in here and I lost my mom almost an hour and a half ago.

Finally, I reunited with Ellie! Got a booklet full of appointments and off I went more irritated than anything. I have never had to sit in so many waiting rooms for such a long period of time. I'm soo glad to be home.  So Day 1 of 29 is complete, and I return tomorrow for what I hope to be a shorter day. I apologize for my grumpiness; it's been such a long day and I barely slept last night because I was so nervous.

Anyways, I just want to thank you guys for your ongoing concern. I truly do appreciate all of the love, the messages, the cards, etc. I just want you all to know that I am going through a really tough time emotionally right now.  I think this "hero" attitude I was trying to take on, finally caught up with me and I suddenly feel like I'm spiralling downwards.  So please don't take offence if I don't answer my phone, my text messages, and so forth. I know a lot of you would love to come and see me, have a movie date, or go out for dinner, but right now I just need some alone time to figure myself out; I'm feeling very overwhelmed. I don't mean to sound selfish at all, I just need to get through this bump in the road. I promise I will come to you when I am ready.  Thank you for understanding.

Well, I'm off to bed!!! I'll keep you updated soon :)

Lots of Love

Jilly

Let's Begin a New Chapter

Several people have been asking me when I was going to write my next blog.  I didn't realize that you actually enjoy reading about my silly adventures.  On that note, I believe it's time to catch you up on what has been going on.  I haven't been posting because I've been very ill these last few months and couldn't find the words to describe my experiences without sounding like a total psych case.


Anyways, the last you heard about was the frozen oven mitts.  I am happy to say that my nails were not affected by the Taxol; I did not have to wear the mitts nor did I have to soak my hands in ice.  I would like to thank my Kirsten for taking such good care of my nails and giving me beautiful manicures; I think she is the reason my nails did not fall off...love you.  I am soo happy to have my LCN nails back on :) I feel girly again.


So my last four chemo treatments were spent in a different chemo suite. I was in a room with about 9 beds side-by-side where I spent approximately 6-8 hours being infused with drugs.  At around 8 am I would begin what I called "the drugs before the drugs." I was given a drip of dexamethasone (the evil steroid to prevent nausea), zantac (to reduce stomach acid) and benadryl (aka night night). After a quick port flush, chemo would begin. Now normally, when you take benadryl, it makes you sleepy. Imagine taking a ton of benadryl all at once. I swear immediately after the benadryl was administered I would become loopy and go into a coma for a few hours.  During one of my treatments, my mom (Ellie) would be talking to me and I turned to her a slurred "Ellie, I can't talk right now!" She asks "why?" In my drugged up state I respond " I can't talk to you because I am so high I can't even formulate a sentence!" Of course she dies laughing and I fell dead asleep for most of the morning. For the next few treatments, Ellie knew what to expect once I had the "drugs before the drugs."


Anyways, since I spent 6-8 hours in this open bedroom, I would meet the most incredible people.  In fact, after I would wake up from my coma, I would often spend the afternoon talking with the other patients, comparing symptoms, and talking about the different drugs we were on.  One day I met an amazing man who was having a blood transfusion. He has stomach cancer that had spread all over and was only given a few months to live. He told me that his one wish was to spend Christmas with his family. Well I am heart broken to say this, but this amazing person passed away a few days before Christmas. I learned a very valuable lesson from him.  Even though I am going through hell, I know that there is a light at the end of my cancerous tunnel and I will be a survivor.  There are people in this world who are very unfortunate and have no hope for a brighter future; I am lucky to have the opportunity to save my life and be able to BELIEVE that better times are ahead of me. And although there are days I feel like giving up and wanting to curl up in my bed and cry all day. I just think of this man and I know he would want me to keep fighting.  Alright, so I just cried for 5 minutes...that's enough...sorry for that everyone.


Ok, so many of you were wondering what my scare was during one of my chemo treatments.  For those of you who don't know, I have this heart condition called Mitral Valve Prolapse, where one of my valves doesn't open and close properly so I get blood regurgatation in my heart and I get these palpatations which feel like mini heart attacks.  Anyways, before each of me chemo treatments, the nurse would take my blood pressure, pulse, and temperature to make sure everything was normal.  Well one morning I went in and my pulse was 140 beats per minute.  For some odd reason I had zero symptoms...Normal pulse is 80 bpm, so you can imagine the shock the nurses had....so they ordered an EKG stat and had my subsitute doctor come in to make sure I was ok. On a side note, my real doctor was on vacation so I had this moron doctor filling in.  So he comes in after my EKG to decided whether or not it was safe for me to go on with the chemo.  His exact words to me were "well I don't really know how to read the EKG, but I think its ok for you to go on with your chemo." Seriously? You are a doctor and you don't know how to read my test results...I was baffled. This wasn't the first time this doctor said something stupid to me.  So on I went with my chemo.  This nurses stayed on top of me for the rest of the day to make sure my pulse was ok.  It went down to 120 bpm, which is still high, but I felt OK so that's what mattered most. Well, everything worked out, the doctor gave me a few sedatives and it ended up slowing down itself. 


So, these last four treatments brought on a whole new set of side effects. Seriously, what more could happen.  Well first of all, I was receiving more steroids that I was the last four times. Steroids + Jill = An eating machine. Not only have I puffed up from all the water retention, but I have put on almost 20 lbs. For someone who was really tiny before, you are probably all thinking, geesh that no big deal; she could afford to put on some weight.  Well, it has settled in 2 areas: my face and my stomach...I like to call myself Flounder from the little mermaid because I look like a blowfish and that I look 5 months pregnant. As I said to Ellie, "well this is what I would look like pregnant...take it all in now, because this may be the only time you see it." In addition to the weight gain, I have managed to lose all my eyelashes. You don't realize how important eyelashes are until they are gone...it seems like I'm always getting crap in my eyes..hehe. Another new side effect has been severe bone pain. I woke up one night feeling like a cement block was crushing my feet. I have never been in so much pain in my entire life. If any of you have seen me lately, you will notice that I am not walking normal. Stairs are very difficult for me. I'm like an 80 year old woman...where's my walker?? haha Anyways, there have been a lot of other side effects, but if there's no need to go into detail about it.


On my last day of chemo, I was lucky enough to have my favourite nurse ever.  Her name is Terri - she is soo full of life and she treats me like a human, not a cancer patient. Everyone in the chemo suite was cheering me on as the drip machine beeped for the last time. It was a day filled with laughter, tears, and joy. As I was walking out, my nurse came over and placed this pin on my shirt.  It was a symbol of the Canadian Cancer Society and it said Survivor on it. She said a former nurse who worked at the clinic made these pins and that she only gives them to patients who really mean a lot to her.  We all cried. As I walked out of the chemo suite, I felt empowered!! I DID IT!! I survived 8 intensive and horrible chemo treatments. Walking into the elevator all I kept saying to myself was "Fuck you cancer...beat it!!!"


So it's been just over 3 weeks since my last chemo treatment and I am feeling stronger everyday. I still get my days where I can't get out of bed, but I must say I get more good days than bad..thank goodness. I guess the hardest thing I am dealing with right now is the emotional stress of looking like a completely different person.  It has finally hit me how sad I am about losing my hair and gaining all this weight. I get really upset when I see how beautiful everyone is and feeling like everything has been taken away from me.  I know I will lose the weight and my hair will grow back, but right now it just sucks. This is why I haven't posted a picture yet...I'm just not ready :(


I had a major decision to make over the holidays. As I went for my radiation consult, my new doctor informed me that many women opt to have a double mastectomy instead of radiation because of the long term effects of radiation (heart and lung problems). They way he was talking about it, he made it seem like I was at a higher risk for these effects because my tumor was so close the my chest wall and that there wasn't much tissue left in my breast. This means that the lasers will be directed right at the chest wall instead of my breast....well this seemed like an easy decision..go for the breast removal.  After consulting with my surgeon, it was to my surprise that he said even if we were to remove my breasts right now, my cancer would immediately come back because there were still cancer cells left behind after the surgery.  So, I have no choice but to go with the radiation.  However, I've been doing a lot of thinking lately, and I have decided that once my treatments are over with, I am going to have a double mastectomy.  Realistically, it is the only 100%  guarantee that the cancer will not come back. As scary as the surgery will be, I have the opportunity to have reconstructive surgery. Woo Hoo...finally, I will have the boobs I never had! So last week, I had the markings or tattoos placed in order to outline where the radiation will be given. At first I was nervous, but then I realized how simple it was.  Imagine taking a blue ball point pen and putting a tiny little dot on your skin. So simple! I have 4 small "tattoos" - two in the middle of my chest, one under my left armpit, and one under my right armpit.


So YAY!! I am all done Chemo!! The biggest hurdle during my journey is over and it's time to begin a new Chapter. Just when I thought I was done with the Chemo Suite, I realized that I will be spending a few hours in there every 3 weeks for a year receiving my Herceptin. At least this time, there are no major side effects with this drug :). I will begin my radiation treatments everyday for 6 weeks starting on January 18th. I will also be thinking of a special friend on that day as she is having surgery on her foot...Please join me in saying a little prayer for her that her surgery goes well!


So, I believe I just bored you enough!! I know I forgot a lot and this blog was all over the place, but at least I got to fill you in on what is going on.  I promise I will try to blog a little more so you won't have to read a novel every few months. I hope you all have a wonderful week and try to do something nice for someone else ;) My goal is to pay it forward and I hope to spread the love onto other people.

Lots of Love
Jilly