Chicken Wings and Pizza Pops

Since the first round of chemo last week I have led a very uneventful life.  I now work from home, have two furballs who think they are my Administrative Assistants, wear no make up and today my "office attire" consisted of sweat pants and my "Downtown Ladysmith" Tshirt 

It is quite boring to work from home and by 9 AM on Friday, was ready to go back to the office.

I was tired for the first couple of days but did not sleep a lot leading up to chemotherapy.  I wouldn't say I had nausea but I mentioned to the clinical trial nurse that I felt a little bit off for maybe an hour the first day (didn't need any Gravol or other medication) and they will be changing my drugs for the trial because I shouldn't feel anything at all.  That's one relief.

My appetite has not changed.  I have always been a big eater.  Maybe not the healthiest eater but I'm definitely a big eater.  I plowed through 4 pizza pops for lunch on Saturday and then made grilled bison with mashed potatoes, mixed vegetables and sauerkraut.

I notice smells but they do not seem to affect me.  I drove past a dead skunk and although I certainly could smell it, didn't upset me.  I keep a Tupperware container with a lid in the car because God forbid, I do get sick...

And I have a cravings for chicken wings?? Not one medical professional can explain that one to me at all.  Even driving to the farm at 10 AM on Saturday, I started to think about fried chicken.

I have been warned that my immune system will kick out 7-10 days after treatments and that is when I will be my most tired.  With each treatment, it will get worse and I will have days that I will not want to get out of bed.  Its like a wave, you just have to ride.  It isn't so bad now because my body is still a chemo "virgin" but give it one or two more treatments.

Today wasn't a "good day"  I received a call from my surgeon and after reviewing my file with the rest of the team, they now feel I should have more lymph nodes removed.  Yes, earlier they told me studies show there isn't a benefit to having lymph nodes removed but now given I am HER2+ and the tumour was aggressive..yada yada yada; she feels it would be a safe option for me to have 5-10 more removed after I finish chemo therapy. 

I feel like I get one step ahead and then fall back two. 
When I told my family doctor about the lump; she didn't think it would turn out to be anything. 
Then it was "indicative of cancer" and the surgeon thought the lymph nodes likely weren't affected and Radiation would fix it. 
That changed to chemo as a preventative measure.
After surgery 2 lymph nodes tested positive
And then I was HER2+ and needed over a year of additional treatments
Finally this....

And there is no guarantee at the end of it.

Could I just have one good day??

This afternoon I received a message from woman I was put in contact with.  She was diagnosed with breast cancer 13 years ago and then a few years ago, it came back and tested HER2+.  She opted for a full mastectomy the second time.

And then I felt bad for my whining.  There are plenty of people who have been in far worse situations than I and have come out on top.

Tomorrow I get all the tubes from my port removed.  Thank God!  Taking a shower has been a little bit like Cirque du Soliel, trying not to get that area wet. 

One Down, Five More to Go

My theory is if you are going to spend an afternoon in a hospital, you might as well make the best of it.  Today went OK and I'm still feeling fine.

For the inaugural visit, Jen and Carolyn came sportin' their finest rock shirts.  We were the loudest group.  I snuck in some vino for the girls, had snacks and a great afternoon of chatting and catching up.  In retrospect maybe bringing Indian Pakoras, sour cream and onion hemp kale chips, cheese curds, etc; may not have been the best idea and any nausea may have been caused by my poor food choices.  At least I didn't bring wings which I am craving right now...

Actually, why did I bring Indian food to chemo??

The first order of business was reviewing the clinical trial I signed up for anti nausea. The whole goal is to not get sick...So far so good, although its only been 9-10 hours.  I meet my home care nurse tomorrow to check in on me.

I have a whole whack of drugs to take.  It's really confusing but its all clearly labeled

The first was a bag of red stuff (can't remember the name of which ones) and this is the one that can make you sick, lose your hair and pee red.  Almost instantly, I felt nauseous and they stopped the ride, gave me some meds via IV, hooked me back up and off to the races.

The second medication was the nurse using a syringe.  This one causes mouth sores so I sucked on Mr Freezies and the third was back on a drip.

All the nurses were wonderful.  They kept checking my name.  I know its to make sure they don't accidentally give me someone else's meds.  But I kept telling them "Yup its me!  don't think anyone else will steal my identity for this one!"

I met another young woman who is now receiving Herceptin through her Port.  She allowed me to watch how the skin is punctured to receive treatments.  I saw everything but the actual puncture.  Some things I prefer to remain oblivious to.  However, she had all the same type of Chemo and was on the clinical study.  She had a little nausea but no vomiting, gained some weight and lost some hair.  She has 3 tumours in her breast and due to whatever reason, is having surgery after treatments.  After one round of Herceptin, her tumours have shrunk considerably.  Wow - makes mine seem insignificant.

Within a couple of hours we were on our way with no issues until Jen cut someone off in the parking lot  Then horns started honking, I flipped the bird and almost got out of the car. Great...Right after my first treatment, and I start a fight in the parking lot of the cancer treatment centre.

And you know I wanted to.

I stayed pretty calm the day before until 5 Pm and as I was leaving broke down to my colleague and told him I was scared.  I have every right to be - I have no clue how my body will react and at the end of it all, if it even worked.  The past week has been a whirlwind of appointments, in addition to my own "prep work" and trying desperately to hold on to a normal routine at work.  I thought the day before, not having any scheduled Dr. appointments, would be easy.  My phone did not stop ringing: My Oncologist, nurses concerning a clinical trial I am part of for anti nausea meds, pharmacy prepping prescriptions and setting up home care, delivering supplies, etc.  I didn't realize any of this would be happening and again felt totally overwhelmed.  Of course having a constant nagging pain from the port and running on virtually no sleep, doesn't help.   Chemo brain has started before chemo for me

Bionic Woman

Having a "Port" inserted is a very weird feeling. It's a small plastic box that sits under your skin in the chest and two small tubes connect to a vein in your neck and another in your chest.  Chemotherapy and Herceptin will be delivered via the port as opposed to turning my veins into railroad tracks.  Right now, there is a tube or two that hangs outside since I am starting therapy on Thursday but I understand it will eventually be removed.  Thank God it's taped up because with my luck, my cat would think it was a new toy.

I'm trying not to be a baby but...Jesus - I think this hurts more than the lumpectomy.

The whole contraption reminds me of my Jamie Sommers doll (AKA Bionic Woman) I had as a kid.  You removed a panel on her arm and leg to reveal she was a machine.  Although I have no moving parts, it's still an odd sensation knowing this sits under your skin.

Fasting began at midnight and when we arrived at the hospital, the directions provided by the nurse was about as clear as my father giving me directions.  Arriving at the wrong entrance, Meta took the maze beneath the Civic.  With no food or coffee, I felt like a slug in a labyrinth.

As I checked in, I turned around to a woman, invading my space.  She looked at me quite angrily and said "I had an appointment over an hour ago." 

Why is she telling me?  I made it on time.

Turns out she went to the wrong hospital to have her port removed and by the time she arrived at the Civic was on a tangent.  What could the nurses do?  They were going to squeeze her in but that would require waiting.  She expressed her frustration to anyone within earshot.  I was told all "port removals" are done at the Civic Hospital.  She wrote down the wrong hospital.  Obviously she has finished Chemotherapy and still hasn't figured out glitches occur.  I learned last week before even starting, that I will be moving from hospital to hospital, there will always be waiting and nothing goes according to plan - And she hasn't figured this out yet???

I recognized her from another period of my life (perhaps retail) and I had a flashback to her condescending voice.  As the nurses were changes shifts, one said to the other "Oh, and disregard"  I know exactly what that code meant.

I made a promise right on the spot that I won't become "That Lady"

I don't understand why surgeons go into graphic detail about any procedure they are going to do for you.  I showed up for my scheduled appointment.  I'm lying in a gurney in a backless gown.  I'm likely not going to back out that point...So why tell me you are going to tug on my veins and attach a tube?  Do they want me to say "Oh wait. On second thought, I don't think I am going to do this..." 

Just do it and tell me what I have to do afterwards to take care of it.

The problem with conscious sedation is that I think I am a stand up comedian at a night club during any procedure.  I've had plenty of colonoscopies in my time to know its best for all parties involved to render me speechless.  Although I can't remember any of my jokes, I certainly remember chatting every one's ear off and discovered one of the nurses is married to a lad from Shawville.

I am starting to think I have built a tolerance to freezings and sedations.  Two freezings didn't kick in during the needle biopsies, which resulted in me grabbing the edge of the table, while the nurse held my legs down.  I brought new meaning to whiter shade of pale - apparently my lips turned white.

Again yesterday, whatever drugs they gave me didn't work and I think I took everything they had available in the end to reach my happy place.  We didn't start off on the best foot when I felt them rooting around inside me.

Afterwards, a lovely continental breakfast was served in the recovery room.  Thank God Meta showed up with coffee and real food.

But there was no rest for the wicked and we were off to the General for a final visit with the Oncologist and company.  By the end of the day, the freezing wore off and life was not so good.

This week is in true spirit of a rock star - Performing at various hospitals.  I need a black Tshirt with concert dates written on the back

Not as pretty as Laura's work but  you get the idea.  Now if only I could make the same sound when I run and jump as the Bionic Woman

Pixie Cuts

Today was the start of a very busy week.  A million and one things to do before I start chemo on Thursday.

I had a nice, quiet weekend away with my guy. There was no dog waking us up to go out or a cat walking across our heads.  It was a the perfect calm before the storm

Tonight was the big "chop chop:"  Number 8 on the clippers to be exact.  Last month I met a young hairstylist who collects and donates hair to Angel Hair.  A non profit organization that creates wigs for children.  Given the chances of my losing hair are very high and after learning that they don't have many natural blondes donating their hair, it was something I really wanted to do.

Its my practical side telling me "if you are likely going to lose your hair anyways, give it to someone who can use it"

Besides, less work for me in the morning even if I don't lose it.

I read somewhere that cutting your hair before treatments is called "Owning the Cancer."  Now whatever idiot coined that intelligent phrase should be shot.  Last time I checked no one wanted to "Own" cancer.  In fact if I could wrap it up, shove it in the mailbox with "Return To Sender" stamped across the front, I would be quite content.  I prefer to call tonight "doing what needs to be done to get you through to the next step."

Earlier today Kim, Meta and I attended "chemo school."  An education session to help prepare people for their treatments.  The class included a short PowerPoint presentation, a question/answer period with a nurse and a tour of the chemotherapy treatment area.  Now for whatever reason, the questions that concerned me the most, revolved around intimacy, wine and driving.  So likely the nurse thought I was a sex crazed alcoholic. I only ask the questions others are afraid to ask.   As I scanned the room, a few people caught my attention:

• The lady and her friend on the verge of going "pink ribbon"  Yes, you can tell those types
• A cute older couple who are taking things together in strides. They didn't ask too many questions
• An older gentleman with his daughter and she isn't taking things very well.  She is trying to control a situation she has absolutely no control over
• An older woman who lives alone with her cat.  I got the feeling she doesn't have a good support network and wonder how she copes

Then I spied a woman about my age as we were having a tour of the facility.  She commented that she needed to cut her hair.  I told her I was cutting mine tonight and asked her when she was starting treatments. Her voice cracked when she said "tomorrow."  I just gave her a hug.  I will likely be reacting the same way on Wednesday.  I realized thisis the first point I have interacted with people who ARE BEGINNING to go through this, not HAVE BEEN. 

Leaving the hospital, Kim wouldn't let me stand near her at the parking machine for fear I will yell at her.  Somehow, I have evolved into the Parking Machine Gestapo.  No one wants me around when they pay for parking

Showdown: Thursday at Noon

I received news this week that I start chemotherapy at noon on Thursday, November 21st; almost 3 months since this whole fiasco began.

Jen and Carolyn are the first to receive VIP backstage passes.  They will accompany me on the inaugural visit!  Rock Tshirts are the mandatory dress code

I won't go into detail about the scheduling nightmare I experienced this week or my nurse with a personality of sandpaper (and I was told I am stuck with her so learn to play nice) Essentially the problem is that I have learned that cancer is treated in Ottawa on Tuesdays and Thursdays (Note the sarcasm) and I had three very important appointments booked with a couple of  hours of one another at two different hospitals.  And the first one required sedation!

Finally I believe I have the issue resolved and now it stands I am going back to school; Chemo school on Monday at the Queensway Carleton. I will have a port inserted Tuesday at the Civic and afterwards, I go the General to wait, in hopes that my Oncologist can squeeze me in between appointments. And back at the Queensway for the big day because there is no room at the inn at the General.

I wasn't a happy camper but I guess part of the lesson I need to learn will be to have patience, be flexible and stay on top of things.

Yesterday was my ECG and guess what?  I have a heart!  No it isn't black and it didn't take an hour to find.

Social media makes it easier to send friends updates on any new information or events.  I updated my Facebook status to notify my friends that Thursday is the big day.  I was overwhelmed by all the positive thoughts, messages and offers to help. 

To be honest, I have days now and then when I have the case of the "WHY MEs?"  It happened after I first told and last week again.  I have told there will be more days like that ahead of me.  I always considered myself a good person who tries to be nice to everyone, feel that I have a deeper sense of spirituality than most, volunteer in my community...So what did I do to deserve this?  But I realized once again yesterday when so many people reached out to me that I am lucky and blessed.  I have so many offers to come with me for treatments, that I had to turn people down for this time around.  My freezer is already stocked with food and offers from others.  Friends have invited me to stay with them during treatments.  Even people I would consider more of "acquaintances" have provided their numbers with offers to chauffeur me to appointments, run errands or just talk.

It took a while to allow people to help me.  I am very stubborn and independent but there comes a point where you need to let people into your life who want to help.  I have equated the feeling to swimming lessons.  When you first try to float on your back it is very difficult.  Your muscles tense and you start to sink.  You need learn to relax and let go.  Often your instructor ill still have her hands under your back for support and keep you above water.  Eventually, when you are ready; she moves her hands away and you can float in the water on your own.

There are so many people who have to endure an illness alone and I can't even begin to imagine how that would feel. 

Eat Your Veggies

I believe diet and exercise plays a crucial role in beating cancer.  A healthy body will help me endure treatments and keep my energy levels up.

I have spent the last 39 years as the poster child of "What Not Eat:"  Red meat, lots of sweets, carbs, salt, fatty foods and very little vegetables.  Often, I would wake up at 2:30 AM, eat 3 ice cream sandwich bars and go back to bed.  I still fight with my mother over not eating my vegetables but since I am taller than her, she can't make me sit at the table until I finish my plate any longer.

Being diagnosed with cancer is a bit of a wake up call.  It's like your body slaps you right across the face and yells; "Hey you idiot.  You know all the bad stuff you have done to me?  Well, pay back is a bitch."

Its time to make some significant changes.

There is no possible way I will ever become a vegetarian.  I do not think it is humanly possible for me.  I have friends who have been urging me to see their Nutritionist but I believe she is a cult leader. I know the changes I need to make to my diet and lifestyle.  I have never made the effort and now is the time.  It isn't going to happen overnight but rather a slow and steady transition.  I have already begun to add cauliflower to my mashed potatoes, eat more chicken, salads and raw vegetables.  I also have cut back considerably on sweets.

Many people ask "Let me know if I can do anything for you"...And I tell them to send me easy recipes that include vegetables but for people that hate the taste of vegetables.

Last week I met with my "Cancer Coach" at the Maplesoft Centre.  I wasn't exactly sure what her role was but expected it to be an orientation of the resources offered at the centre.  Instead, she is a health and wellness professional who helps me set my personal health/wellness goals and creates a game plan to meet these goals.   So we discussed my diet and she gave me a few pointers on how to set metrics and monitor my progress.  In addition to the above, I also feel I do not drink enough water but drink too much coffee instead.

What did I do the minute I left?  I met Bobby for a coffee at Starbucks, then on my way home stopped to have a couple of vodka/cokes with some friends (does ice cubes count?) and finished it off with a bowel of ice cream before bed.

I really am a work in progress

I was impressed with the Maplesoft Centre.  There were so many resources available including nutrition classes, art classes and various fitness classes.  Ok, the laughter yoga and pink swan ballet may be too many of the Pink Ribbon brigade for my liking; but when I feel the on set of becoming a germaphobe, its nice to know I can do Hatha yoga in a "hygienic environment."  I hope to continue using my own gym, except if the regulars are sick ...or worse, in January when all the New Years' resolution people decide to use their annual membership for 3 weeks.

The hardest part will be "taking it easy"  I have never been one to sit still but I have been forewarned that I will be very tired and the cheat sheet provided by the hospital indicates my type of chemo treatments will make me very sick.  When I was read the riot act by my Dr about getting rest and staying away from sick people, the first thought that passed through my head was "How can I host Christmas dinner?"  Then panic struck at the thought of a good band coming to Ottawa and what if I can't go?  I still live in a fantasy land where I don't believe I will be sick nor tired.  I continue living in that fantasy land until the moment I am sick

You Just Pick Yourself Back Up and Brush Off the Dust

I was going to start off this entry with an apology for last night’s update being a bit depressing but I’m not going to because everyone is allowed to have good and bad days and yesterday was a bad day for me.   Last night I was not in my happy place and that is ok...I am allowed.

Yesterday, I was smacked right across the face with a lot of information.  We were not persistent in asking the oncologist and nurse to slow down and explain things clearly until we understood.  We should have resisted when we were told to put down the pencils and listen to what she had to say, because we were going to receive handouts.  They were at least 30 minutes behind schedule and it was over lunch time so likely both professionals were hungry.  Finally, because I felt that HER2 was not explained properly, I had to Google it which is never a good thing

Lesson learned and I won’t let it happen again

I understand they have lots of patients to see but the only one I care about right now is me and I need to express that each time.

From now on, I will also carry snacks for my health care team, in case they don’t have time to eat beforehand. 

 Today’s appointment went much smoother.  The nurse took the time to explain everything, we didn’t grasp yesterday and the Resident was equally as clear with his information.  My Radiation Oncologist (Rad Oc.) is a wonderful man with a thick Parisian accent, who reminds me a wee bit of Daniel Craig and I feel the need to bring cheese and wine to our next meeting.

 Everything I Googled last night was correct last night but stats show it has a 20% chance of recurring anywhere in the body, over the next 10 years and 80-85% rate of survival.  Now I also have chances of getting hit by a bus, shot or struck by lightning and I don’t lose sleep over that at nights.  All I need to know right now is that testing positive for the HER2 Receptor, determines the type of treatment I receive.

I feel confident in not moving forward with a second surgery to remove the lymph nodes.  Studies show there is no difference in the outcome; between surgery or the treatment I receive.

6 weeks of radiation treatment will follow chemotherapy and it will target breast, arm pit and collarbone area.

The other tidbit of information I just found out was that ;Yes, it may occur in 20-25% of all breast cancer patients but the HER2 + is  common for women my age…Not a high number of Pre-menopausal women get breast cancer in the first place. I going to guess that is part of the reason why it sits around 25%

My spidey senses tell me that treatments will start on the 21^st or 22^nd.  I will likely be another puddle at least one more time between now and then.  But I am ok, you can’t keep me down for long.

On a side note; I almost became one of those annoying people at the parking pay machine yesterday.  I left so bewildered that I left without stopping at the pay machine.  I am so hell bent at NOT being one of those people; I ran inside quickly.  As the two morons, in front of me took their step back, with their arms out looking for divine intervention as to where they insert payment; I quickly scanned the machine for “insert card, insert payment, press here for receipts” and got out in record time.

Sentencing

Today I met with my Oncologist.  I did not feel anymore intelligent, leaving than when I walked in. In fact, it was pretty confusing and could not keep up with all the information thrown my way.

What did I learn?
Its Invasive Ductal Carcinoma, Grade 3 (aggressive), Stage II (caught early).  The tissue around the tumour tested negative 
My Estrogen and Progesterone receptors tested negative; meaning my cancer is not affected by them
But my HER2 levels (protein) tested positive
About 20-25% of breast cancer patients fall into my category

What that means?
God only knows....

I know I promised myself that I wouldn't Google anything but since I didn't grasp what I heard today, I took a sneak peek online. Don't worry, I am still sane but this is what I learned:
I have a crappy, aggressive form of cancer with a higher chance of recurrence and a lower chance of survival...Fuck...
However, treatments have come a long way and the outcome is much more positive.

Treatment (AKA Sentencing)
Chemotherapy: 6 treatments called FEC-D over a span of 18 weeks.  One treatment will likely last 1 1/2 hours, wait three weeks for my immune system to bottom out, let it return to normal and do it all over again.
Typical side effects include everything you read about

Herceptin: At my fifth chemo treatment, an antibody called Herceptin will be introduced.  It is also administered via IV and that is a total of 18 treatments with a three week break, between each one.

Radiation:  I meet with the Radiation Oncologist tomorrow (not to be confused with a Radiologist) but it will begin right after Chemo.  I am not sure of all the details

Total treatment time?  According to our calculations, 66 weeks

Next steps?

Meet Radiation Oncologist (Dr. C) - a second surgery to remove lymph nodes has not been ruled out and I will get his opinion, look at statistics, etc and make a decision based on that.  If I decide to go ahead, then it will delay treatment 4-6 weeks

Heart test -  just to make sure I can handle all of this

Dentist appointment - Common symptoms include cankers, thrush, etc.  SoI need a good cleaning and advice on oral care

Chemo School - To learn what to expect and how to prepare for it

Have a "Port" inserted - This is a little plastic tube inserted under the skin, connected to a vein.  This is how I will be receiving treatments as opposed to wrecking havoc on my veins

Am I scared??...Hell Ya.  I would be lying if I said I wasn't.  In fact the past week has been a little more of an emotional roller coaster than the usual tilt-a-whirl I prefer in the "carnival of life."  I am used to life being a little more cut and dried.  If there is something wrong, you do the recommended and that's it!  You move on.  And that's the attitude I have despite having two chronic illnesses: Colitis went in remission and Graves Disease has been easily controlled by medication. 

But with cancer, solutions don't seem to be so simple

I keep telling myself that I am not the first woman to go through this...25% of women with breast cancer are in the same boat as me and many are fine.  People have been in worse situations and bounce back beautifully.  It seems treatments used have a higher success rate.  Will it come back?  show up somewhere else? It could and couldn't...Tomorrow one of you could be hit with cancer too.  It shouldn't affect how I live my life.