D is for DAMN!

Docetaxel is my latest drug in the cocktail elixir of round 4. It is the only drip for the next three rounds. I had been prepared for the many side effects of this one but thought I would hold off judgement as I had gone through the first ones without many side effects. Chemo takes place on a Wednesday and then within 24-36 hours after the fact I was to get an injection of Neulasta. It is meant to help increase your immune system but can also cause muscle and joint pain.

So in I go for chemo with my "tree root" vein which they are unable to use. They heat up my hand with a warm blanket and then go searching for another vein source. Nurse K thinks she has one, but doesn't get in...then tries again on the underside of my arm...ok THAT hurts...but does not succeed. She calls over Nurse W <as they only poke you 2x before getting someone else...they are kind like that>. Nurse W searches all over, heats me up again and then goes in...nope...sigh..but the 4th time is a charm and we're off. Sometimes this drug can cause an allergic reaction when then inject it so they sit with you for a bit to ensure everything is all good. And for once I am doing well..no coughing fits, no numbness in fingers and toes all good. I sit quietly observing all around me while my husband is up observing a gentlemen next to us get injected through a port. Sick husband!

After an hour they do the flush and off I go. Well that was nothing! The next morning I wake up a little tired but I am pleased that I am not hitting the 1/2 hour wall like the first three rounds. I am a bit tired but I can push through this one. Then comes the injection, you have the option of having VON come into do this but my husband is a trained professional so I gave him the benefit of the doubt and let him inject me. I have never used any type of illegal drug in my life and now I am being injected with a $2000 legal drug...kind of seems off..maybe I should have tried some cheaper stuff first..but I am a girl with expensive taste. The needle was like a skin scratch and I felt some fluid move but within a minute you would never have known it was done. <Injected into my side stomach...lots of fat layers to hide the pain> Unlike my arm, which now looked like a pin cushion full of bruises and injection sites. Good job hunny!

I did start taking the ibuprofen and got the prescription done up for the Tylenol 3s but wasn't sure I needed them as this chemo seemed to be going well. Then I woke up the next morning and felt like I was getting the flu. Every muscle in my body felt like it was seizing and it felt like my cough was coming back. Although it was hard to tell as the acid reflux came back with a vengeance during the night and felt like it had burned my throat. Maybe I was getting the flu...I took a shower and massaged my muscles and felt good..I then got out of the shower and all things seized again..oh..ooh..did I mention this was Christmas Eve.

I went out and did some errands which turned out to be faster than anticipated, given the day, and came home. I started feeling really tired and decided to lay down..the only problem with this was that everywhere ached, so after an hour of fighting with positions I got up, took a bath and wrapped some presents. I tried to have a drink but it burnt my throat even more and I just gave up. Damn it ...it was Christmas and I was going to suck it up. We went out a friends house but after an hour of trying to move around to get comfortable and drinking water I thought..maybe we should go home...I walked through the door and went to bed with a hot water bottle. Not that this did any good as I flip flopped the whole night trying to find one place that was comfortable, only to discover there were none to be found. Although my husband did roll over to me and said..I'm a little cold...do you think you could have a hot flash right about now...seriously? Do you want the Christmas tree shoved up your ass? Actually I was a little chilled too but did not wish for the hot flashes.

The next day between the pill popping, a couple of baths massaging the pain, the acid reflux continuation and the hot flashes I was thinking MERRY F%^KING CHRISTMAS! I did manage to move around the house as small step walking seem to help..avoid stairs though..they hurt...got dressed..occasionally found myself staring at walls ...I made it to Christmas dinner. I was lucky as I only had to show up...not that I was much fun...two large hot flashes and tunnel vision later, my taste bud seem to have gone out of whack as well...I was only too happy to get home to bed....I think I got about an hours sleep as I had constant hot flashes that lasted almost 3 hours.

At one point I thought I should take my temperature but decided that would not get an accurate reading..then I thought..should I go to emergency as this is cannot be normal...but did I ...no...I laid there soaking through my pajamas, occasionally getting up to walk around but got cold...and went back to bed. The next two days I laid as low as I could. I was ready to have a full mental breakdown but kept thinking..this has to change at some point right? It can't last for three weeks..can it? I was due to go to a family function but decided this was not my best decision and family understands.

Also on day 5-6 my taste buds flared up to 3x their normal size and everything I ate had no flavour and tasted like sawdust...oh did I mention the insane diarrhea..yup...keeps getting better and better. I am one attractive lady!

On day 6 I decided I should get a massage. Someone rubbing me with heat and oil for an hour was a good thing. I was lucky to get in on such short notice and I took it as a good sign. The moment I got on the table and the large heating pad was put on was the first moment of relief I felt in 6 days. I have not gone for a massage since before my surgery as I wasn't sure how to approach the situation, but being in constant pain for 6 days makes you get over any inhibitions or embarrassment you have. I just flat out told L that I was going to take off my wig, I am in chemo, I only have one breast and please help me. L was great and she wasn't phased at all. She got the extra big heating pad, extra pillows to help prop me up so I laid flat and we laughed and giggled for an hour about our crazy dog stories. <She wins those ones>, Afterwards I got up and for the first time in many days I walked without pain. Why had I waited so long? How long will this last? When is the next available appointment?

And the good news is that I have found McDonald's banana-strawberry fruit smoothies are a relief to my mouth. I don't care if they have sugar in them...being able to "eat" something with flavour overrides this. I will try to make another massage appointment with in the next two days as L is booked, need to buy smoothie supplies...oh and did I mention that a hemroid has decided to flare up and the sides of my mouth have cracked...fun times....I think I should buy a pharamcy as I seem to be there often enough!

Who's the boss of you

Ok so I was all cocky thinking these first rounds were no big deal. Then chemo stuck me in the ass and made me realize whose boss in all of this ...and it is not me. After my third round the vein they had been using for the three rounds decided to become irritated. It all of a sudden got hard and felt like a "tree root". I couldn't straighten my arm or carry any weight in it. I could feel the vein from the point of where the injected me all the way to my armpit and it HURT to touch it. I called the cancer centre and they said this is common and to apply heat on a regular basis, take Tylenol <checking temp first> for 48 to 72 hrs. Well this was a bit difficult to do as we were on the road visiting family, but I did get a hold of a hot water bottle and attempt this as often as possible.

And to top it off the Saturday before my last chemo I did not follow my own chemo rules by keeping up with my snacking every two hours and staying away from grocery stores on the busiest day. I got a bit run down and a cold found its way into my system. So here I am visiting family with a constant running nose, a cough that sounded like I had emphysema and should be taken to emergency. Fun times.

Normally a cold for me takes about 3-5 days to get over but 4 weeks later I still have the occasional cough and the running nose took almost 3 weeks to go away. As for the vein, I can still feel it but at least I can only feel it in my lower arm portion as opposed to from my wrist to my armpit. I still put the occasional hot water bottle on it..but it just goes to show that I am not the boss of me! Who knew? Apparently everyone but me..lol.

Look Good Feel Good

There is a program at my local hospital <check yours as they seem to be everywhere> called the Look Good, Feel Good Program. This program teaches skin care and makeup for women <or I suppose some men out there> going through cancer. As one of the wonderful <sarcasm alert> things that the chemo drugs do to you is dry out your skin. At times I can put on what feels like 10 lbs of cream and 2 seconds later it looks like I haven't put any on.

I booked this appointment weeks in advance - it books quickly- as I felt that I should wait until I had a couple rounds of chemo under my belt so I looked more "cancerish". I arrived a couple minutes early but found out quickly that I was the last to arrive...anyone who knows me, knows this is normal for me. I was quickly ushered to a seat and the next thing I know a box of items is being unloaded in front of me. It seems like the never ending box of all new and well known products. All products in the box are based upon skin tone and all alcohol free..good for dry skin.

The class lasted for about 2 hours and we started by all taking off our makeup. Any woman knows that this has to be a very secure environment to bare it all in front of 9 other strangers. I wasn't sure what to expect from this class as I didn't know anyone who had gone to it, but I do recommend it. Did they teach me anything I didn't know...not really but the product I scored was unreal.

In the box:
- 2 skin toners
- 1 box of makeup remover wipes
- 1 face cream
- 1 sunscreen
- 1 under eye toner
- 2 hand/body creams
- 1 foundation press powder
- 2 liquid foundations
- 1 eyeliner
- 1 eye shadow compact <4 colours>
- 1 blush
- 1 mascara
- 1 brow pencil
- 1 lip liner
- 3 lipsticks
- 1 lip gloss
-  1 lip conditioner

I felt like Christmas came early and while in the end I may not use all of the products given I did look good and feel great when I left there. After a while the group loosened up and shared stories but this soon lead to the "great wig debate". Apparently, most women prefer scarves to wigs and our group was all about the wigs. I like taking the path less traveled..the scenery is always better.

It was fun to see a variety of wigs and these too are available to borrow for FREE...my favorite word..free. It was also great to see a group of women from a variety of backgrounds, ethnicity's, stages of cancer and ages all come together and laugh about something none of us have any control over. It made me realize how many of us there are out there and how thankful I am to have the hospital I go to in my area. A big shout out here to all of the volunteers who make this process a little easier.

2 for 1

I have been a little neglectful in filling you in on the last two rounds of chemo. I have just had #3 of 6 so I am half way through the chemo portion. Can I get a whoot whoot! Luckily these three rounds have been pretty much the same...lots of pee breaks, constant eating to control the awful acid reflux, chemo fog aka large mental blocks, and limiting activity in the first week to 1/2 hour stints.

In the grand scheme of things and compared to others stories...I blew right through these. I have heard other people talk about not being able to handle the downward elevator...which sucks because chemo is on the 11th floor! Others are having dramatic mood swings, I just call that me! Some have talked about extreme fatigue and severe nausea...thankful I have not had either.....NOW....having said that, my first three rounds were the same drug. The next three rounds will be different. Only one injection of Docetaxil. They mix things up a bit but having me take a steroid the day before and after. Currently I am only taking them for three days after...and so far no weight gain from them but I do swell up a bit..wearing rings or should I say getting them off has become challenging at times.

I am still had the coughing fits during the injection of the epirubicin which is apparently the first in the history of this hospital. Oh well..there is my claim to fame...although this round I drank 1.5L of water during the 1/2 hour it took to inject it and it still wasn't enough and needed more water...crazy really. If you told me I had to drink that much water in a short amount of time I would have said you were nuts but as it turns out it was easy and I didn't even notice that it was gone until I coughed...and coughed...and coughed. Where is that Popsicle for injection 2 when you need it.

Mind you, there are a couple guidelines I do recommend as I was a bit of a bad girl and went out after the 3rd round of chemo instead of going home to rest. The nurses were not worried so why should I be...but if you decide to do this, I do advise:
1. Not wearing so many layers...hot flashes came in plenty of waves..this might have something to do with the tank top, shirt, sweater and down jacket I decided to wear in +14 weather
2. Do not walk up hills, this is hard to avoid where I live but by the time we hit the top of the hill, I thought my heart was going to come out of my chest. this went away shortly but did not help with the hot flashes
3. Do not drink caffeine...it will not help with the heat
4. Do not dance for 2 hrs in a venue full of 10k ppl...sit occasionally
5. BUT I wouldn't have done any differently as it was a great way to say bye bye chemo round number 3

EI..EI..Ohh

I am not sure how other people do it but this whole EI thing is crazy!

My office does not have short term disability and since it was highly recommended <and enforced by my oncologist and surgeon> to not work during the chemo and radiation process, I agreed to take the time off. To be honest, my surgeon was willing to sign me off after my surgery. But let's face it, I am not a good stay at home person so the 6 months I was taking off would be more than enough for me.

So I worked up until my first day of chemo which happen to fall on a Wednesday. So on Wednesday morning I filed my EI report and dropped off the necessary paperwork to a local office. I was told with an illness/injury claim the waiting period was 28 days. 28 DAYS! I at least knew my last day for awhile and had time to prepare/save..but if you injure yourself tomorrow and live pay cheque to pay cheque what then?

I was also told that the benefits would only last for 15 weeks..so me taking 6 months didn't exactly add up. My work does have long term disability but I figured that the difference in the time between EI ending and me going back to work wasn't worth the hassle of applying for it. Apparently <only from what I hear> that insurance for LT disability is not easy to get and takes several months of "fighting" to prove you are sick. At this time I think of people with terminal cancer or people with families and think ...Yikes what resources do they have! This could financially ruin people.

My work insurance does have a critical illness clause which I didn't know about until they told me. It is a percentage of your salary that you get as a one time payment. The process does not begin until 90 days after your diagnosis and will not be paid out until after your EI claim ends but it is nice to know that there is light at the end of the tunnel. I am also thankful that I am on B's medical insurance. While my medications are not obscene (about $100-$150 per month) I am glad that I only have to pay the filling fee, as this is an expense which I do not need to pay while I am in the "waiting period" of EI.

So I waited about 3 weeks and received my password to login and file a report online. I did this honestly and told them that while my employer put down that my last day worked was the 18th they paid me for the additional three days in the pay period. After I spent the next 20 minutes filling out the initial report it kicked me out and told me my report was not complete and to call a 1-800 number. When I did I was "helped" by a very rude person with no common sense. < I would have peed in his cornflakes too!>

First he told me that my first problem was that I worked 2 days and I need to have 5 consecutive days where I am sick. So I asked "Are you telling me I need to be sick on a Friday as opposed to a Tuesday?" This made no sense to me...and he replied yes??? First scolding for actually working as I should have played hooky. He also told me that I would need to have my ROE adjusted as my work put down my last day for which I was paid was incorrect. I asked if he could adjust this on his end as it was noted in the boxes below that they had paid me for a full week but had made a slight error in one box. His question was "Why would your employer pay you for a full week when you only worked two days"..which I responded "because they are nice and care about me". Apparently, to him this was in the realm of nonexistent. He wanted me to call and ask my employer if they had indeed paid me for a full week...URGH why would I lie?? I hung up the phone fuming.

I waited 5 minutes and called back. Luckily I got someone who was VERY helpful and just moved my start date back a couple of days and common sense actually did not elude him. He made a couple of quick adjustments to my claim and I had to go back in the following week to complete a one week report but all was good. So all I had to do now was sit and wait another 3 weeks to be paid. This is where our system is messed up. If you are legit sick you get 15 weeks but if you don't feel like working after you have been laid off you can take your full 52 weeks...what am I missing here? Apparently sanity.

Wigging Out

The loss of my hair has not only been emotionally painful but physically as well. I knew the day was inevitable but still shed many tears over what I would look like bald. Each day after chemo I pulled my fingers through my hair to see if today was the day. I was always overwhelmed with relief when I realized I was "safe" for another day.

I think <no expert here> that the hair loss portion of chemotherapy is more traumatic for women than men. Women make a ritual out of their hair and I am no exception. I love going to my hairdresser, curling up reading magazines by the fire in the winter with the best hot chocolate and a glass of wine in the summer. L and I would laugh and giggle for the whole two hours. When it came time for what both of us assumed would be my last appointment for awhile we were an emotional wreck. We even started with a glass of wine to get our emotions under control. I had decided to cut my hair short in anticipation of my future. My hair had not been long in a long time but I went from shoulder length to a pixie cut. I did love my new do but it was a constant reminder of what was to come.

After my first round of chemo I went to a wig consultant as I had heard it could take 7-10 days to get one in and you lose your hair approx 14 days after chemo so there was no time to waste. I called around and discovered there was a huge difference in what services were provided with the wig as well as the price. I choose a place that was more expensive but it offered a full consultation, the wig, stand, shampoo and conditioner and styling.

Now the real vs synthetic. I opted for synthetic only due to cost. I could not justify $1000-2000 for a real hair wig which I was hoping to have for only 6 months. There are different types of caps and this is where the wigs are separated, get what is most comfortable and you feel will not come off. I went for the "Cadillac" version of the cap. It is full mesh cap with rubber pads and tightens in the back. It fit my head and there was no chance that thing was coming off. Overall choosing a wig is pretty basic. Pick the cap, pick the length and pick the colour. Hence the reason choosing someone who can style it makes all the difference.

The chemo school did forewarn me that when hair loss was about to occur it would feel like a too tight pony tail. What they didn't tell me is that it would feel like 500 too tight pony tails. On day 10 after chemo my head was really sensitive to the point where it hurt to wash it. Laying my head on a pillow was by no means soothing and I was thinking at this point a geisha pillow would come in handy.

I think this is your body's way of coming to terms with hair loss. By day 12, I was thinking we were going to need new plumbing. My hair, even as short as it was, was coming out in droves. Everywhere I looked there was hair on the floor around me. I took the dog for a walk and there were streams of hair coming out from my head. So much so that I checked my head a lot during this time to ensure no bald spots were occurring.

I called D to find out where my wig was and made an appointment for day 14. I have always had fine hair but a ton of it. You have over 100,000 hairs on your head and I was losing about 10 at a time. If I ran my fingers through my hair it looked like I had cut a chunk out. I figured at this rate I would be bald by day 14.

On day 13 I did not run my fingers through my hair as I was in conserve my hair mode. I didn't go anywhere but I did wash it but admittedly did not brush it. I started to, but I was brushing out more hair than I think was on my head. I then decided I was ready for my hair to be gone. I had come to terms with it and knew that <unfortunately> thousands of other woman had been in this same place before me.

Now I might talk the talk, but getting in the car to go to my wig appointment was a whole other ballgame. It was like going to meet my maker and the 50 steps from the car to the front door took many long deep breaths. B had come with me and I had already decided he would be the first to see my head shaved. I couldn't see it happen. D was awesome and when I told her I couldn't watch she understood.

She spun me around and began cutting <she cuts your hair to 1/8" long as the wig and a newly bald head would be too sensitive together>. She even took the effort to move any cut hair away from falling on the cape. When she was done B looked at me and said...you have good shaped head. D massaged my head with a tingly product which felt great and soothing. It was the least painful my head had been in days. It was a relief.

She left the room and B said..it doesn't look bad. I turned my head slightly to the mirror and did a quick peek...was he crazy! Quick, turn my head back. Won't be doing that again for awhile. Bravery is not my forte.

Once the wig was on D spun me back..well that looked pretty good. She parted it, shaped and styled it. Wow this thing actually looks like hair!

That night I took off "Molly" and stared in the mirror. I was more than hair. I had gone through so much in a short period of time and come through it in what I term as easily. This was one more hurdle that I had crossed over. It was <in my mind> the high jump of hurdles. From now on I am on the healing side of this crazy cancer thing.  Now quick put a hat on because my head is freezing!

The days following

Believe me when I say the "chemo fog" they talk about is true. The week following my first round of chemo, I could not put full sentences together. It was as if all the neurons were misfiring and making any life changing decisions during this period is not recommended. I got half way through making dinner and forgot what I was making...not good when dealing with open flames.

Napping is also recommended. Don't get me wrong I am a girl who has always loved her naps but things are different now. I felt like Wile. E. Coyote when he hits the wall, slides down it and decides...this is a good place to nap. I was good in half hour stints. Then I would hit the wall and have to sit down...I was good to go in about 10 minutes and this is when you realize...I guess something is definitely going on and my body is trying to cope.

To top it off, acid reflux has found its way to my body. I have never had any heartburn or acid reflux in my life...yes this keeps getting better. I have found that I am able to keep this under control with a slight amount of food..literally a couple pieces of carrot or a piece of cheese and it goes away. Although a piece of cheese is not overly appealing at 2am so I have opted for animal crackers during this time. Gotta keep the kid in me going after all. Plus water is your best friend....keep drinking it...the constant bathroom breaks suck but at least it keeps away the dryness in your mouth.

Then there are the drugs. I only have to take them for a couple of days which is good because one of the steroids makes me looked sunburned and alcohol during this time is meant to be eliminated...and this is probably when you want it the most. After the first week was over, my body, mind and spirit started coming back. The fog lifted and my energy level came back and for the next two weeks it was like nothing was going on.

I didn't get any mouth sores, but did find myself in the first week biting the inside of my mouth..but I blame that on the fog. I also didn't get the aching joints or some of the other side effects so all in all one week out of three to be down isn't so bad..right...?

I did check my hair each day to see if it was falling out. On the 12th day after chemo I started noticing strands of hair coming out...but that is another story for another day.

Stay tuned.

The New Kid in Town

I wasn't sure what to expect on chemo injection day. I had tried not to read anything about this as I realize everyone reacts differently to it. As previously forewarned I had planned a fairly bland menu for the next couple of days...aka things that if I did throw up wouldn't be so bad the second time around. Plus I had a basic lunch...just in case.

My husband, knowing the hospital a little too well, took us up the back elevators. We arrived outside of the surgery room and I thought...ahhh...been there, done that. But then noticed a small 'this way" sign to chemotherapy. After wandering through a series of hallways, past a great city view <for those who are not scared of heights> we arrived at the registration desk and then hung out in the waiting room.

Today it was filled with people with hair- no baldies today...hmmm..we must all be new or they are on a different chemo path. The room was filled with a mixture of men and women and the long term room was full, making the fact that I live in a province where 47% of people will develop cancer more prevalent.

My name was called and we were led down a hallway to one of the short term rooms where there were three recliner chairs. Don't think we are looking at la-zy boys..but more like typical hospital version recliners...but comfortable. My chair was all ready for me with a heated blanket already on it. Nurse V went over what was going to happen and what the injections consisted of. She would administer the first two and the third would happen by drip. She also explained that she would be watching for any signs of allergic reaction and I was to tell her if I felt anything off.

Nurse V then looked at my veins and sighed. Yes my veins are disappointing as they shrivel from fear and do not often make an appearance, she was not to take it personally as they are not always cooperative. She got a hot towel and "hot" water to soak my hand in to try to make my veins less shy. Well the towel was more luke warm than hot and I think my saliva was warmer than the "hot" water. But being a good patient, I did as I was told and she was able to get me on the first poke. Mind you she did hang my arm down and she sat on the floor to do the injection...but she got it. She did recommend a port being put in and I agreed to this.

She injected the first medication (Fluorouracil) which is red in colour. So red going in means red coming out. Shortly after she began, I started feeling a little flemmy <nothing out of the ordinary for me> so I got out my bottle of water and began drinking it. Nurse V looked a little concern and asked how I was feeling...I'm good. I felt like my nose was getting stuffy so I drank more water, only this time I swallowed it wrong and began a coughing fit. B was quite calm as this is a normal occurrence for me but Nurse V was looking very concerned and said "I have never seen this reaction before". Then B explained ..nah this is normal for her...and I nodded in agreement as I was still to busy coughing. The injection continued and before I knew it Nurse V was onto the second injection.(Epirubicin)

Nurse K came in a checked everything as well before the injection began and it was explained that everything is double checked from the nurses end and it was also checked against my chart as well. Good to know that they are very careful before injecting poision into me. Nurse V then checked everything as well, and by this point my coughing was under control. I did feel a bit of a flutter up in the top of my arm which is normal, but again this went smoothly with no issues and so far I didn't feel any different. So onto injection three. (Cyclophosphamide)

This was done by drip, and again the checking of medication <and me> happened. There was one other gentlemen in the room and when I was almost finished the drip, so was he....it was a race to the end. I know competitive, even in chemo. It turned out we were done at the same time and the machines started beeping like we were lottery winners. Nurse V called for Nurse K and we were unhooked and free to go. I was originally told to expect between 2.5 hrs -3hrs given it was my first go, but we were done in just over 2 hrs.

I did have to pee before I left to ensure the drugs were working..in other words they wanted to ensure I was peeing red. I walked into the washroom and there was a hose next to the toilet....I was thinking "do they have to spray this place down often enough to need a hose?". But then I thought it was better not to think about this fact. I did my business and when I got up..no red...but it was the colour of beep juice. I guess that is close enough. It was not as "pretty" as the turquoise pee from before though.

That night I did eat a bland diet and took the one pill that was prescribed. I felt a little tired but other than that I was all good. I went to bed a little early and had no problems sleeping. So first round of chemo down...only 5 more to go.

Chemo School.101

Yup you heard it hear first. You need to go to chemo training before getting chemotherapy. You are probably wondering why would you need to do this? Trust me, no one fails. They are not going to say "oh no you didn't pay enough attention to the slide show so we cant inject you with several doses of poison". Can you imagine the drop out rate.

We had heard about the "chemo suite" before<sick sense of humor alert: or as B like to term it "sweet, chemo..".> on the top floor but could not imagine what it looked like. I pictured marble bathrooms, leather seating that reclined with massage functions built in. Flowers every where and freshly pressed linens...well not so much.

It was like any other floor, only it was dedicated to cancer patients. The waiting room is like all the others, no fancy chairs but at least on this floor you do not have to take a number. And the bathrooms...well they do not have marble ...B confirmed this..and I have yet to venture there as I already have a public washroom phobia.

They do have a lounge area on this floor called the "Sunshine Room". It is a bright yellow colour <go figure> where they have it decorated like grandma's your  living room. It also has wigs and scarves available for you and a couple times a week students come in to do massage, reiki, etc free of charge...so it kind of is the "sweet, chemo" room.

As we waited in our common chairs to be called to class I noticed several bald women in the waiting room and thought...where are the bald men. Plus I was surprised to see so many with their heads bare as opposed to covered in a hat, scarf or wig. This was a good sign of this being a comfortable environment.

My name was called and off we went down the hall passed all of the people getting chemo in what they term "short term rooms" . ie 3 hrs and under. Else you are in a big room behind the reception desk for longer periods. I am glad that it is the short term rooms for me. BTW that is where the bald men were:)

Chemo school lasted just under two hours and talked about precautions should you throw up...basically B is going to need a hazmat suit for the first 48hours. They talked about what to expect, myths ...and the nurse knew our individual situations so she was able to comment on whether or not we could anticipate different things. I was told I could get mouth sores, aching joints and when I lose my hair it will start feeling like a too tight ponytail...great something to look forward to.

Overall it was informative. It was a small group <three of us and our partners> so asking questions was easy and it was kept fairly light giving the topic at hand. I did not receive a certificate of graduation but instead given a date for my next two rounds of chemo and given the low down. Blood work followed by a doctor's appt the day before to ensure your blood levels are good. Then the next day will be chemo.

Ok chemo training done...next up poison injections...I know the fun never stops!

The Big O

For those of you who have just googled orgasm or Oprah. This is the wrong blog. My big O is for the oncologist. Ok this still sounds dirty but soooo not! This is the first time I have had to enter the actual Cancer Centre of the hospital. I have skirted all around the hallways but never graced the entry way..until now. Again the usual setup, take a number ..wait for your number..but wait…there was an unfamiliar scent in the air. I turned to see two students begin to pick through a variety of cabinets and begin to make freshly brewed tea and coffee.  My first thought was this must be for people having chemo. Then as they filled their trolley with tea, coffee, juice and cookies I thought something doesn’t seem right. Then they began offering it to people waiting in the waiting area. The CANCER waiting area…wait are we in the WestJet lounge, am I being punked? Seriously, you have to have cancer to get a free cup of coffee…..ding..oops that’s my number.

I register with all of the basics, name of family doctor, where is your nearest drugstore, referring physician, name, did you get your cancer package in the mail? Yes and it wasn’t like the day the wish book arrives.  Then I go back to the “lounge” area to see what happens next. I could use a bowl of soup….  Not so lucky, my name is called and we are taken down a hallway where we are introduced to Nurse H. Right away I wonder about our relationship status as she asks me to step on the scale…ahh Nurse H we are in a hallway and have just met…at least the students offered me cookies! Hmmm can I blame my weight on the digestives I didn’t take? Sigh..step on the scale.

B and I are then escorted to a room which actually looks freshly painted <which we find out later was because two days prior the pipe in the ceiling leaked>. Nurse H asked a couple of general questions and wanted to know what I had found out..in other words “what did you find on the internet that I am now going to have to discredit”. Honest injun’ I have been good and haven’t looked up much. I learned that lesson early on!

She explained the process…we would be visited by three ghosts…nah wrong story….she explained that Dr R our oncologist was great. Everybody loved him <no pressure> and that he would always be late! Well Nurse H you are honest so we will get along well.

Out steps Nurse H …15 mins later in  steps Intern N..Intern N, I quickly discover, has lost his sense of humor prior to med school. Frankly B and I were like a comedy act full of shifty eye movements and subtle glances and offhanded remarks. But Intern N was very matter of fact and asked a variety of medical history..some of which even we had forgotten about…oh yeah the goiter <not really, but a fluid cyst near my thyroid 2 years prior>. He did a quick exam of the incision as well as the “good” breast said he would go find Dr R and be back.

Well Dr R must have been on his way back from China because it took him 45 mins to find him. In walks a Dr who is around 50 and looks like he is trying to impersonate someone from Grays Anatomy...and has the hair to match. He speaks softly and a bit slowly and B can see my annoyance…GET ON WITH IT MAN…all I want to know is how long…..as he thoroughly explains what I have, the pathology report and then begins a diagram. I don’t think many people have a sense of humor about their cancer…go figure…as he wasn’t sure what to make of mine and B’s comedy duo but at least he began to laugh…finally… we’ll have to remember those jokes. The diagram is broken into two parts followed by what looked like hugs.

F-E-C  D-D-D  XXXxx

-----------HER2--------???

FEC were the names of the first drugs I would receive for the first three rounds and D was the second round of drugs I would get for a total of 6 treatments. Once every three weeks.  The X’s represented the rounds of radiation I would be looking at which would be decided by yet another doctor. It would be somewhere between 3-5 weeks every day. One of my tests had not come back yet on whether or not I would receive the HER2 injection, if so I would receive this injection for the next year, but that did not affect my current treatment. Any questions?

I looked sheepishly at the paper and then at Dr R and asked....”and when will I lose my hair”. He pointed to the first round of chemo…”14 days after your first chemo”…then I asked...”and when will it grow back”…..he pointed to after the x’s. Sigh

Comedy duo signoff.

It's a race

Long before my diagnosis, our company decided to enter a team in the CIBC's Run for the Cure. It just pushed home the point when I announced my diagnosis. Our team spent weeks having brewery tours, bake sales and flat out begging for money, to which we raised over $2500.

My husband also had a team (immediate family and friends)on the go and by casually mentioning it to people, and not spending every Thursday baking up a storm, ended up raising over $2000. (Final tally not yet had as his company is matching his donation).

We are very pleased by our results..slightly competitive as I figured that since I have breast cancer therefore, I should at least win this race, but sadly he has kicked my ass...next year though will be a different story.

The weather has been great up to this point and it was looking good, until a hurricane decided to change its course slightly and decided to hit our run site. The race started at 10 am and our teams were meeting in the same spot which we thought was a clever spot. Until we discovered everyone else had the same idea as it was the registration spot.

As we are standing under an over hang the light misty rain started to turn to actual rain drops. While we were waiting for the last of B's team to arrive I looked out over the sea of people and I am suddenly confused. (I actually have a reason for this...so wait for it) I turn to B and say "Is that your dad?". Side note: His dad lives 16 hours away. B..looking just as confused...says "Ahh yeah". He and his wife had joined B's team but were suppose to run in their home town..or so we thought. We soon learned that the plan from the beginning was to join us at our location as a surprise...well you did it! It was a surprise..

I immediately called my parents and guilted them into driving down an hour for an after run bbq. I figured one hour vs 16 hours would probably go in my favour.

We lined up, like cattle. I think there was a warm up involved, but by this point the rains had picked up and we were huddling under the largest umbrella I have ever seen. A smart car would have been protected under this thing.  B's team went to the front of the pack since they were all running, while my work team hung back and were debating whether we were going to walk the 1km or 5km. Hey, don't judge us!

The start was announced and about 20mins later we were finally going under the start sign. We walk about 500m and start to see the first of the runners coming across the finish...ok this could be a long walk. Just after we passed the 1km mark, we decided the umbrella was too heavy and ditched as we passed one of our cars.

The rain let up, we took off our jackets and were walking happily along. We passed several cars who obliviously didn't know that the run was on as they were stuck in their cars waiting for 1000's of people to go by. I think we were suppose to stick to the side walk, but when you are a large mass you kind of take over. One lady was stuck in the middle of an intersection and decided to roll down her window and smoke...I wish I was joking. Justice was the that she was still there as we rounded back.

But by the time we reached 4km the rains were getting heavier and then the heavens opened up. It poured down in sheets so heavy that it became "white rain". By the time we got to the finish line we were all drenched and the finish line was like a giant mud pool with 1000 of your closest friends. We looked at each other and said..err Bye. I think we all jumped in a puddle at some point back to the cars as we were not going to get any wetter but cleaner would be good.

Afterwards we had our friends and family back for a bbq. It was great to see everyone laughing and telling stories and all I could think is that I am one lucky girl. Present condition excluded.

The Path Ahead

So the next big day in our adventure was hearing what the pathology report had to say. I was actually looking forward to what the report might NOT say. I know I am backwards but trust me.. this side of the fence is just as crowded.

Today the waiting room was not a ghost town, but I was put in a room quickly and did the change into the Johnny shirt <ties facing forward>. A new Dr came in....and explained that sometimes he and Dr. T help each other out and that way they get to learn each others areas as well. I guess he dealt more with the bottom half of woman than the top half.

He did an examination on me to see how I was healing and then flipped open the report. I felt like I was in a drama show and had to keep waiting past the commercial break to see the next segment. He reviewed the results:

Tumor size: 7.5 cm ...holy shit!
Margin around tumor: they want 5 mm as a clear zone and I had 8...ok lets keep the good news going
Lymph nodes: in 1 of 9 ...yeahhh only thing better would have been 0
Grade: 3 ..well kind of expected that one considering the size
CAT scan: all clear..meaning nothing else anywhere in my body
Wall Motion study: strong heart


That was the basic story of it. There were other parts such as my tumor was negative for estrogen cells which means drugs like Tamoxofin won't work, but really the news was great.  It meant that from a cellular level technically I was cancer free.BUT he explained this did not get me out of chemo...damn!

He went out of the room and discussed my report with Dr T and in comes Dr T who did a quick check and was thoroughly disappointed that he had to take all the lymph nodes when only one was positive... I was ok with this scenario. If they had a chance of being infected...take them, I don't want them. Then he basically signed my release form and said...see you in a year! Wow....but then again this is not a department you want to be a repeat visitor in.

I did ask if he had any idea what my chemo rounds would be. He didn't want to guess at all as he said...because of the size of your tumor you will have chemo probably followed by radiation but as for anything else...I have not idea. Well that makes two of us.

At this moment the reality of my original appointment hits me. If I hadn't pushed for an earlier mammogram I cannot image the size my tumor would have been. Dr T was bang on when he said "if you had waited until October there would be nothing I could do for you". He was right as the tumor has grown .5 cm just in the week and a half from the core biopsy to my surgery. Again I say BE YOUR OWN ADVOCATE. My story could be very different had I not been. I shudder at this thought.

As we wave good buy to Dr T and Dr. ? ..enter Nurse L. Who asks how I am feeling...this becomes a very common question asked by everyone..and has nothing to do with my physical health but rather my emotional stability.

I was great. As far as things that could have been in that report I had come out well. She did admit that she was very surprised I didn't have to come back in after I got the drains out. She took them out only because of my persistence but she did say to the other nurse "I really expect her to be back for drainage". Oh no...you see, once you let me get out the door....I am not so good at coming back....until you make me....I guess that means I would be a bad psych patient.

Hi Ho.....Hi Ho

Most people think I was crazy to go back to work two weeks after my surgery, but I think I would go crazy if I didn't. I do not recommend this venture for everyone but I have a desk job where I do not move around a whole lot. Unless I put on my headphones and start chair dancing. I did look up the average healing time which turned out to be 6 weeks...6 weeks with me at home not allowed to do anything would have not been good for anyone within a 100km radius. I am not good at not working!

One thing I was not prepared for were the questions I was asked as I left very abruptly two weeks ago. So the main story that went around was that I went on vacation. Not really a holiday if you ask me, but I tried to play along until I said...screw this...people I have cancer. I must admit a perverse side of me did get enjoyment from the jaw dropping. When you go from thinking I was on vacation to having cancer...it is a long distance for the brain workings to have to travel. I debated on telling not telling people but eventually when I go off for chemo I figured...they are going to know...so what difference did it make if they knew sooner?

It was quite liberating to tell people. This way, if my boobs were not in proper alignment at least there was a valid reason. Not sure what another reason would be though??? What was a little uncomfortable was that the second day I was back we started talking about the CIBC Run for the Cure. We had planned to put a team in before my diagnosis but now it seemed awkward. Some people did know...some people didn't know. Plus let's face it...this was a cause that was pretty near and dear now.

All in all my return to work was smooth. I did stop when I got tired but only went home early one day. And the true testament to my appearance came when one of the sales people came up to me a couple of weeks ago and said:

KS: So when is your next appointment
Me: Not until the first of October
KS: So will they discuss what they are going to do then
Me: I hope so
KS: So do you know if you are going to have a mastectomy or not?
Me: <dumbfounded look> ahhh I already had that
KS: <looking at my breast(s)> WHAT!

Damn...I guess the stuffing does work!

Back in the saddle

I was determined that I was going to return to work within two weeks. Why? Because I am crazy and not a very good patient. Ok I suck at being a patient. Each day I made goals for myself and by the end of the two weeks the only thing standing in my way was driving my car.

I had talked it over with a friend who was willing to switch cars <hers is an automatic and mine is a standard> but I decided that sooner or later I was going to have to try to drive. I know I was told two weeks before I could drive but 1 week and 5 days is close enough.

It is strange that cleaning windows and vacuuming didn't scare me but driving my stick shift did. It might have something to do with the fact that if something happened I would be in a piece of metal hurling at possibly another car..vacuuming doesn't have those kind of consequences.

I decided I would start with driving around the block and then if all went well I would venture to the grocery store. I know..big plans...BIG. I breathed deeply and jumped in. I started the car up and played with the gears. So far so good...ok let's try motion.

I backed out of the driveway and felt no pain..hmmm. Drove around the block doing about 30kmph ..even old ladies were walking past me...but still no pain. I sped up...I was going to beat those walkers now...and headed out onto the open road...well more like a main artery but it felt like the three minutes I spent driving was like a get out of jail card had just been handed over. I was back in action!

Now this is not to say I didn't experience any pain and I probably would not have ventured too far on this day. I did make a couple of trips around town and even backed out <not into anything> of a spot. I did have to come home and rest my arm but all things considered I was on the mend. It is amazing how the thing you were most scared of turns out to be really nothing while something as simple as raising my right hand has been the biggest challenge. Mind you, this hasn't stopped me from asking a question or going to the bathroom...I am such a rebel.

Put a sock in it

Now that I am drain free I have to figure out how to stop all of my shirts from pulling to one side. Who knew that having one boob would make so much difference in how your shirts hang. The day after the drains came out I was quick to try to figure out how to make my breast<s> look au natural.

I took my regular bra and started stuffing...geez I must be back in high school. I just dealt with being flat then. No rosebuds now. Now I look back thinking...why did I want these things? Oh yeah...boys like them. Should have dated butt men...I still have lots of that.

So I put on a bra. Looked at the provided sock and thought...wait are there directions? How does this thing go, sideways or up and down.  You would think this would be an easy decision but I tried it both ways and neither was working. Plus I was still very tender and could only clip the bra loosely. After much playing with the sock I decided to ditch it and put in the "cutlets" I had from my wedding. Checked with B and he thought it looked good...then I stood up. On what universe this looked natural was beyond me. I had one boob looking National Geographic like and one shooting for the sun..can you guess which was which. Mental side note: only put a sock in it while standing up.

Let's try this again, adjust adjust adjust...ok I think I've got it! One sock + one cutlet =looking semi normal...who knew? Then I sat down and stood up....hmmm...one blew east and one blew west. Damn it! Who knew stuffing your bra was so difficult...I must admit I did look at the kleenex box wondering...do you think I can google how to stuff my bra?

I adjusted once again deciding that checking myself out was going to have to be a common occurrence. Hey baby..how you doin'. The 'rents showed up and my mother walks up the stairs and pronounces loudly...wow they look natural....blush...thanks mom.

So at the young age of 40...I know know how to stuff my bra....and I have had enough of that....Off to La vie en rose I went for the "Figure correcting bra". I may still have to stuff the bra to give it the proper curve until I get a prosthetic, but at least they have more weight and I do not have to adjust so often. So for all those late bloomers out there, throw out the kleenex box and get some bigger cutlets.

Out out damn drain

I was told at the beginning of this venture that only 20% of people get their drains out after a week I was aiming towards this goal. I did my exercises, ate well and watch as the drains changed from bright red, to stringy, to yellow with strings to finally yellow. I was 80% positive these drains were coming out, as I was tired of looking like a pregnant quasi modo.

We <B and I> arrived at the hospital with me holding my "pregnant belly". The drains were tucked up in my sweatshirt and I didn't trust them not to fall down; which might have given people a shock as they were in a light pink bag which kind of looked like testicles when they hung down. I figured holding a belly was less damaging to the psyche ...mine as well as passing strangers.

We were escorted into what looked like a supply closet with a bed. I did the change to the Johnny shirt <ties in front> and waited. Nurse L was the first to enter and checked over the dressing <which had all but one strip hanging off...I might have helped this along as the  bandage was driving my armpit crazy> and the drains. She said everything looked good...good as in out they come or good as in keep up the good work and we will see you in a couple of days.

We handed over our chart progress and she looked at it. Nurse J enters and reviews the chart, the dressings and the content in the drains. Nurse J is my all star today as she gave the go ahead to take out the drains. They started taking off the bandages around the drains and the room suddenly got very warm. I tried to take off my shoes and they decided I should lay down while they do this. Apply cold cloth to forehead.

As they pulled the first one I could feel it slide across my chest and out it came. There was some discomfort but I was happier to say good riddance. Then they began with the second one. I think this one was somewhere around my armpit as B's eyes got wide as they pulled and pulled and more kept coming out...finally I was drain free! I have the two holes below my chest to prove it...they were like badges of honour..my permanent "gold stars".

Side note: If you are interested in what the drains look like <click here> and remember I had two of these. yeah..I can say had:)

Dr. T then came to take a look. If I was shy about showing my breasts before this point, I now didn't care who saw them...you get over this amazingly quick. The incision was mostly flat with a bump between my breasts and a clump of skin underneath my arm pit<which I refer to as my nubbin'>. Yes my scar runs from the centre of my chest to the other side of my arm pit. At this point the scar is still covered with steri strips which will have to fall off in their own good time. BUT I was now allowed to get in a shower, stuff my bra with a provided "sock" form and get out of the house. Things were looking up.

Dr. T requested a MUGA scan <to ensure my heart was strong enough to withstand chemo> and they checked on the status of my CAT scan. My pathology report would be in on September 8th and we should know more about the tumors he took out then. After barely having time to comprehend the next step a month seems so far away.

Overall I felt like a kid who was just told they were better and could play outside. We hi-tailed it out of that hospital before they changed their minds and I spent the rest of the afternoon laying in the sunshine.

Day by day-Friday to Monday

I am making daily strides and set small goals for myself. Whether it is to move my arm up another inch, put on a T-shirt or make the bed, each brings me a feeling of accomplishment. I do sit there and look at the dust bunnies piling up, the sad look on the dogs face <wondering why I am not taking him for a walk> and the sun outside; but I do realize <while not enjoying having them> my limitations.

By this time B has gone back to work and I am <semi> able to wash my own hair and get out of bed by myself. These things are HUGE. I have read a lot and the gifts that have arrived rival my birthday this year. All I have to say is thank god for fruit!

My appetite is limited but I know it is important to eat, you just become more conscious of what goes in your mouth when you do not feel like eating. I sleep quite a bit and enjoy visits from friends and family to keep me entertained. Dance puppets...dance!

I have stopped peeing teal which is disappointing as it was such a pretty colour compared to the norm, and I am now down to only taking Tylenol 3s before I go to sleep. I am still sleeping on  my back with my arm propped up on a special pillow but for the most part I sleep through the night.

I have to admit, the most exciting day was the day B had some errands to do and I decided to venture out in the car. While I might have only sat in the car, I now know what a dog feels like. If I could have physically stuck my head out the window and let the breeze blow through my hair, I would have. <future goal> We were only out for a short time, but being confined to home ground was getting tiresome and I didn't want the drive to end. B took the long way to the last errand as he could sense my "drive faster and further". I sighed when we got home but was excited for another venture if it was only down the street...sad but when they say it is about the little things....I now believe.

Biggest accomplishment: Venturing in public
Most thankful for: Turkey dinner

Day by day-Thursday

Day 2
OMG, today I don't feel like someone had a baseball bat....today someone ran over me and then backed up with an 18 wheeler. Ok let's try getting out of bed again...left arm under body, straighten arm...damn it just sunk 4" into the memory foam and now when it is bent I am barely off the pillow....think ...think...hmm the cat slept with me last night and he is not liking the look in my eyes ...I wonder if a cat can haul a lot....he quickly jumps off the bed.

Let's try the roll thing again...but I'll inch my way closer to the side of the bed....Do you know hard it is to inch yourself to the side of the bed when you cant move the top half of the right side of your body. I get almost to the edge and I hear B get out of bed....I lay there like I haven't been doing anything. He heaves me up and I wobble to the bathroom and then the chair...do the drain thing.

BUT today with the drains they are lighter in colour and stringy...I make the gagging motions and look away while B drains them and cleans them.  The stringy stuff is actually coming out of the drain....I think the room is spinning.....close your eyes and go to your happy place.....

Today my goal is to dress myself....I get most of the way there with the exception of being able to put my arm all the way into the sweatshirt. Again I spend most of the day sleeping, reading and doing my exercises while having my husband fead me. Tonight we curled up in "my" bed and had movie night...why haven't we always done this...oh yeah...

Biggest accomplishment: Almost dressing myself completely
Most thankful for: Bath in a bag

Day by day-Wednesday

Day 1
OMG, did someone hit me with a baseball bat. Drugs I need drugs. Ok drugs are in, now I attempt to get out of bed. It is amazing how you need the mobility of both arms or good abdominal muscles to get you easily out of bed. I have neither. I guess I could lie here and wait for B to get up...well that lasts all of about 2 seconds. I then look at the dog on the bed and think...I should have hooked his harness on him the night before so he could drag me out. Hindsight is always 20-20. I decided to sleep in the spare room for a couple of days so B could get some sleep and our bed is not big enough for him, my injured self, a dog, and a cat.

So how am I going to do this, roll to the left ...ok the 4" think memory foam is stopping me. Think. think. ok if I just slide my legs over to the side I can then turn them , giving me momentum and giddy up. I inch my legs over and then realize...damn...I am too far in the middle of the bed and my legs aren't long enough...think....lets try those abdominal muscles...oh shit they are connected further up to where the drains are connected which is connected to where my breast was. OUCH! I admit defeat. sigh.

B then wakes up comes over to the room...help! I get seated up..now what. I guess I didn't think this through. I wobble my way to the bathroom and then make it to a chair in the living room. I feel like I accomplished a marathon. Then I look at the drains...oh goody....they need to be emptied. <Have I mentioned how much I love my husband.> He goes and gets the measuring cups, sets up the paper chart, drains the two drains...while I sit there trying not to look or gag.

VON shows up to check on my bandages and to start my exercise routines. I wobble myself back to the bedroom <why did I get up?>. I pass my inspection and start on the exercises...I feel like I have never used my arm before...I literally get it a foot up the wall and I feel more than a "gentle pull"...come on!

I try to move it further and it is a no go. sigh...this defeat thing is already getting old.

I spend most of the day reading, sleeping and calling for help.

Biggest accomplishment: I pulled up my own pants <did I say how much I love my husband>
Most thankful for: my husband

D-Day or should I say -B Day

I surprising slept very well the night before the surgery but I was a bundle of nerves once I woke up. What to wear? I decided on a heavy sweatshirt and easy to pull on shorts as I could be sleeping in this for a while. We showed up on time <kind of>, registered and I go changed into the infamous Johnny Shirt..this time strings on the back. I met with the nurse who took my blood pressure and who asked a series of questions, all of which I responded no to. She looked at me suspiciously ..."So except for the cancer you are healthy". Seems like a contradiction of terms..but yup!

B and I were led upstairs to another waiting room and the floor still had the lights turned off .<Hello, anybody home?> Apparently the hospital is in a cut back rotation....great...all the staff is on board today for my surgery right? We then get the Ok- the doctors are ready- we are off again. At this point B and I have to separate and I continue down the hallway to a stretcher. ahhhh ....mommy.....

I am asked to lie there while they finish getting the operating room ready. I get comfy, get a hot blanket put over me and the next thing I know there is a line up of people beside me. I feel like the Dali Lama and I have just opened my door for visitors.

Visitor #1 is Dr. T.  Are you happy? <excuse me> You're not feeling depressed or anything? ahhh I see where you are going. No I am not depressed but let's just say this surgery will not make it on my highlight reel. This is the stage when I ask for drugs...I want a prescription because I am a wimp with pain! I don't deny it...give me drugs!

Visitor 2: The resident...who will give me the drugs.
Visitor 3 & 4: The anesthesiologists....real and student...student seems a little nervous...I hope I am not his first pin cushion
Visitor 5: The nurse liaison who then makes me repeat what visitors 2-4 have talked about and what I am here for

Once I pass the test, I am then brought into the chilly room and introduced to people 6-10...I hope I don't have to repeat names. I lay on the table and then gently pull my johnny shirt around my arm as to not expose my breasts. Seriously people? I know the moment I am out this thing is being whipped down to my knees. Why be modest now?

I lay back..watch the nervous anesthesiologist get an iv in my left hand ..a mask goes over my face and I do not remember the count down......

<time laspe 2 hrs and 20 mins>
Blink Blink....I gradually wake up and look around to see a large room full of about 10 spots. A nurse immediately comes over and asks me from 1-10 how much pain I am in...I say 7...before I know what is going on she is jabbing something into the IV drip and things get fuzzy and distant...my eyes close

This routine goes on for a little while <about 1hr> until I say I am ok to go to the next room where I will be sat up. I then notice I have two drains. I expected this but was still surprised to see them. This means my sentinel nodes are gone as well and I have had an axillary mastectomy. I am not surprised as I knew with the size of my tumors (3.4cm and 4cm) this was a high possibility but I was always hopeful that they wouldn't have to come out.

Side note: The day before I had radioactive material inserted into my nipple so they could literally use a metal detector<technical term geicometer-spelling not so sure of> to find the sentinel nodes,,,,sounds scarier than it actually was.

I stagger my way to the chair and I am wheeled off. Not really sure where I wheeled to as I was still quite drugged but I was delivered to a much smaller room with old fashion lazy boys and moved from the wheel chair over. Nurse 1 comes over to offer me liquid....yes please. Nurse 1 and 2 attempt to have a chat with me but I am happier to just fade in and out. After a while I decide ..ok...time to go home. Nurse 2 goes to get B and Nurse 1 attempts to get me dressed...this is the first time I see the bandage...wait..is the room suppose to spin like that. Cold cloth please.

2nd attempt at getting dressed goes much better and I get into the wheel chair. Now I have B, Nurse 1 & 2 asking me if I am sure I am ready to leave...get me the hell out of here! I am wheeled down to the front doors ever so cautiously by Porter G who is worried about my stomach turnings..and rightly so.

I do hang on and the breeze threw the front door feels like I am on the front of a sailboat,,,was going to say the Titanic..but that went down. Get in the car and we are off.

I lay in bed, needing help to do everything as I can barely move my arm or body, I am nauseous but never throw up. I am definitely not looking my best. VON comes in that night to check on me and then it is lights out. I only have to wake up B once during the night but sleep through most of it. Part 1 down. I wonder what tomorrow brings.

Twas the night before

I am sure most people spend the time before a mastectomy concentrating on getting mentally ready to loose a breast, I focused my time on how to regain it. Many people seem to have different options on how reconstructive surgery goes. Especially when it comes to the nipple region. I realize I have a long way to go before I get to this point but..hmm how do they make a nipple?

Apparently your natural nipple is made out of similar material as your earlobe, but then I would have a defunct earlobe or it can be made out of the labia. Yup I said it the "nether-region". Now I wondered why the labia? When my husband quickly responded.....so guys can find it!

Funny guy.

There is also the option of a "nipple tattoo". I think this would be a better option then cutting apart my body more...maybe I should get a full on chest tattoo to mask both breasts and make them indistinguishable between real and fake. It would give the technicians something to talk about when I do go for the next mammogram. On second thought this may not look too pretty when I'm 80. An array of fish and flowers may look like the tank of the wilted and dead.

I guess this will be one more decision to make down the road.

The doctor awaits

I have been "lucky" in the sense that my appointments have been quickly followed by another appointment. Thus, not allowing me much time to think. My appointment with the surgeon was scheduled for the week after my diagnoses. Of course I spent some time researching him and discovered that he specializes in breast cancer...so in my mind a good guy to have.

Unlike other parts of the hospital, where it is hurry up and wait, we arrive to a newly organized section. At least I hope it is newly organized as they were still debating about how to work the numbering system....not giving me a lot of confidence here ladies. Once their debate was over, a new file was created for me, where they continued to put more and more papers into...I don't think my record was this big from birth onward. They know it's just one boob right...how big is your file if it is two.

My husband was not missing this appointment due to the results of the last one. Plus I needed someone to help remember/understand some of the possible information I was about to be given. We were directed into a room that was a fair size. I disrobed and put on the johnny shirt. 

Side note: The Johnny shirt is a cruel piece of material. Different departments want you to put it on different ways. This so called shirt doesn't look good either way...one size does not fit all. Plus shirts don't go to mid-calf. If you put it on with the top tie facing forward it wants to choke you. If the tie goes in the back you have to be a contortionist to tie the bottom tie. I think "Johnny" was in an insane asylum...just saying I need to design something better.

Knock knock. <don't you always want to say ...come back in 5 minutes> A woman peeks her head around the corner and sees my husband. A shock look goes over he face <did I get the wrong room> then her gaze falls on me and she enters. She explains how the process will work.
- She is a resident <as in student>
-She will ask a series of questions
-She will do an examination
-She will report her findings to the doctor outside
-The doctor will come in, do an exam himself
-He will have a discussion with us about our next steps

Seems straight forward....

Step 1:Question Period
Dr J: So you know you have Invasive ductal carcinoma
Me: I do now <this is good in the scheme of things as from my neurotic googling I know this is the most common type>. You have to realize my doctor technically never told me I had cancer.
Dr. J <puzzled look>
Dr J: Do you have a family history of BC
Me: Not that I am aware of. My mother was adopted.
Dr: J: Do you smoke
Me: No
Dr J: How much do you drink
Me: Maybe 1 glass a week
Dr J: Have you noticed an increase in tiredness
Me: No
Dr J: Have you lost any weight
Me:sigh ...No
Dr J: Have you had a decrease in appetite
B:<belly laughter> NO!
<evil sideways glance from wife>
 
Step 2: Examination
I hop up on the table. I get groped on my right side then my left
Dr. J: Wow that tumor is quite large and you can feel the definition of the two
Now I probably should have responded with "why thank you" but thought this may be inappropriate.
A little more touch touch, poke poke and we were done. Then she left the room. <this sounds like some of my past relationships>

Step 3: dun dun dun..the Doctor enters
Again he does the touch touch, poke poke. Only he does a little extra and circles my breast around saying, "I don't think it has attached to the chest wall" <ok this is good> but it has attached to the skin. He then turns to Dr. J ..Do you know how I know it has attached. She has a blank look, I await with curiosity...how Dr. T..how? You can see the puckering when you press it inward.....oh yeah you can.

Dr. T: Ok that's it you can get up....wait...<how come I have all of this touching and no one has yet bought me dinner. >

I get up..contort myself with the shirt and sit back down. Dr. T turns to me and looks me straight in the eye.
"You have to have a mastectomy. The tumor is too large to have a lumpectomy. You will have chemo. It will be Tuesday and I will confirm the time"

GULP ..Today is Thursday. That is only 4 days away. He went on to explain some details but my mind had glazed over...all I heard was you are young <wait did he call me young> and therefore the cancers tend to be aggressive. You probably have noticed it growing rapidly....yes. Any questions? <Questions? No my mind is drawing a blank....might have something to do with the "system overload" sign blinking in front of me"

As he was writing a bunch of stuff on my chart he is questioning Dr J on some items. If I need to take out the sentinel nodes, which nerve can I cut?Pause..answer: incorrect. Questions 2: What nerve do I want to stay away from: Pause..answer: incorrect. <jokingly..but not really> I look him in the eye...You're doing the surgery ..right? Yes..Pause...answer. CORRECT!

They leave the room, I get dressed and try to take in the information but it is too much. Then Nurse L walks in..sees my face and proceeds with caution. Ok so your surgery is at 7:30am Tuesday morning...you have to be here for 6:30am.

WAIT>>>Dr. T just walked out the door how did it get scheduled so quickly? She hands me a folder and a series of books and ask if my family Dr gave me "THE" book.<Intelligent Patient Guide on Breast Cancer> Nope. I am thinking at this point I should switch doctors. Armed with an array of "light" reading she begins to explain each of the items she has given me along with what the drain I will need to take care of looks like. I am once again overwhelmed by the information I have been given and need to digest it. Did I hear the word drain?

She writes down my next appointment which is the next day for training??? Then directs us to the bowels of the hospital for blood work. My knees wobble. It will be less than a month from the time of my very first mammogram to having surgery. I am pretty sure this is the fast track!

I had planned to go back to work after this but after getting into my car I realized..."who am I kidding, I am not even sure I know how to get out of the parking lot at his moment" Breathe In. Breathe Out. You can do this!

To tell a tale

If anyone is in the position of having to tell people awful news that they were not expecting...you know. It is the hardest thing you ever feel you have to do. Telling our parents felt like ripping out our hearts. Telling friends wasn't any better. After the telling continued you would think it would get easier, but it does not.

While they are only three little words, they are the hardest to say. I have cancer.

What was even worse is that most people had no clue I had even found a lump.

Lesson learned: Secrets get you no where

During this tell-all period I had many breakdowns trying to wrap my head around the next step. I searched on line for answers but didn't find any that matched what I was going through. I figured after my last google "misunderstanding" I should stay away from the googles.

I also had a hard time coming to terms with what to call what I had. I didn't like the word sick as I have more than a cold. I didn't like the word illness as I think it is a negative word sounding death like. Disease sounds like someone else can catch it. Tumors make me think of Arnold Schwarzenegger. So I guess I have to stick with the actual word of Cancer.

Both of my parents have had cancer <different kind than me> and they both told me face to face.  I realize now how much courage that took. It is not bravery as you have no choice but to walk the road but it is courage of strength and will that gets you to the intersection.

I am most thankful for the love and support of family and friends as well as from the people I barely know. It is with courage that I walk this path but I am thankful to have an endless sea of people helping me stand tall.

The results are in

3:35pm Phone rings

J: Hello

Dr. B’s office: Hi J. your results have come in and I am wondering if you are available to come in on Monday

J: <the results are in…I thought I had another week> Actually I can come over today if you can fit me in

Dr. B’s office:hmmm let me see, how far away are you?

J: 10-15mins

Dr. B’s office:ok, come right now and I will fit you in. He is in walk-in today but we’ll squeeze you in

3:40pm

I quickly email my boss to let him know that I am leaving for the day. I text B. to let him know the results are in. Shut down my computer, I can barely think straight, grab my purse and keys and fly out the door. Hop in my car and I am off for what seemed like an extremely long ride. I cross over the bridge and out of nowhere I say out loud “Please don’t let it be cancer”.

Breathe in, breathe out.

3:53pm

I get to the Dr.’s office and register. The receptionist tells me it wont be long he is in with one patient and she will fit me n before the other.

I get a text from B asking if he wants me to have him there. Nah it will be a quick results of the fibrocystic disease. I will see you at home.

4:02pm

I am called into Dr. B’s office

4:03pm

Dr. B enters the office

Dr. B: How are you doing?

J: <laughing> I don’t know, you tell me.

Dr. B: Your results from your biopsy are in, they are written on this paper.

Dr. B.: Can you confirm this is your name and date of birth on the top.

<confirm what? He knows who I am…I don’t understand why I am confirming the information>

J: Yes.

<quickly scan the page before he starts talking, ok I see the spot of the lumps…

Dr. B: So you had two biopsies and they are both tumors.

…scan, scan, scan…look up

J: okkkk???

Dr B: So from this point the clinic will contact you and they will continue your treatment from here. You will now be in their care.

WAIT…their care. What am I missing?

Pause

J.: <slowly> Do I have cancer?

Dr B.: Yes

J: Are both tumors cancerous

Dr B: Yes, both are cancerous. Both are tumors

J: So what now?

Dr. B: You will be called by the clinic in two weeks and this is the only information I have.<He hand over the paper and I scan I for anything additional…nothing>

J: ok < I get up..stunned>

Dr. B: Good luck and let me know if you have any questions

4:08pm

Questions: What is he talking about. I open the door and I am confused which way to turn. I quickly walk out the front door to my car, get in, close the door. Tears stream down my face. 

I have cancer. I have CANCER. I HAVE CANCER.

I begin to sob uncontrollably. What should I do? Can I drive home? OMG I HAVE CANCER.  I start my car and begin the drive home. Tears will not stop streaming and my sobbing continues. I am a mess. I cannot believe the results. Am I going to die?

I drive in the driveway and B is not home but I know he will be here shortly. I run in the front door and the dog immediately knows something is wrong. He looks at me and my sobbing breaks out again. I get a face cloth and run cold water on it, trying to make the tears stop. They don’t.

I sit in the living room waiting for B to show up. He arrives minutes later, get out of his car, walks up the front path and sees me. Immediately he knows the answer to my results. Runs through the front door and hugs me. We sob uncontrollably for what feels like hours but is only minutes. Finally we pull it together enough for me to tell him what the doctor said. I do not know what kind of cancer I have, exactly what the next steps are or anything. All know is I have breast cancer. 

How am I going to tell my parents? I think they are at the cottage and I cannot tell them while they are there.

I need a glass of wine. Maybe two.

I did try to call my parents at home but they were, as suspected, at the cottage. I decided to wait until the next day to tell anyone else in hopes B and I could figure out how to tell people. To this point I had only told a couple of people that I had a lump, no big deal. How do I go from saying that to what is now the result? 

That night B and I went out for dinner as we had planned to do and strolled along the waterfront. Being in public helped me from crying, my eyes did water on occasion but I kept it fairly under control.

I am not sure why the overwhelming feeling of I have let everyone down” kept reoccurring for me as this was not something I had done to myself, or caused. I felt guilty as I was about to drastically change everyone‘s life close to me. 

That night B and I talked about a lot of things and cried ourselves to sleep. One step at a time was what we agreed to.

<whisper> I have cancer.

The Waiting Game

I was told it would take 10 business days before I was given the results of my biopsy. For the first two days my mind was fine as it concentrated more on the healing of where I was permanently inked. I was still sore from the procedure and decided Ibuprofen was my friend.

After to days the "googles" started setting in and I looked up the difference between fibrocystic disease and breast cancer.

Symptoms of Fibrocystic Breast Disease

• swollen and/or tender breasts
  
• possibility of one or more lumps
  
• pain level from minor to severe 

ok I have all of these symptoms...but what about that cancer word...

Signs and symptoms of breast cancer may include:

• A breast lump or thickening that feels different from the surrounding tissue
• Bloody discharge from the nipple
• Change in the size or shape of a breast
• Changes to the skin over the breast, such as dimpling
• Inverted nipple
• Peeling, scaling or flaking of the nipple or breast skin
• Redness or pitting of the skin over your breast, like the skin of an orange

and whew...I have only one of these, a lump. Plus my family has no history of this type of cancer. Ok breathe. How many more days of this do I have to wait? Seriously by the time my results are going to be in I am going to be a basket case where the ibprohen isn't going to cut it.

Play: Theme music from Jaws

So what do you wear to a core biopsy? I thought a skirt was the best solution as it "went with" the lovely hospital gown and would allow for comfort. Side Note: I am sure I am not the first person who thought about what to wear to a biospy.

Ok I was prepared. I read my brochure, did some research, knew what was involved. I can do this!

I get to the same place as the mammogram but was called to door number 1 as opposed to door number two. This room was bright and had a reclining chair...how bad could it be?

The technician gave me the run down
-We will put you in the chair
-Face you sideways
-Line you up to the mammogram machine
-Clamp down
.....ok I can already feel the pain. Wasn't their suppose to be freezing involved. I should have taken stronger drugs

- Then we will take a picture
-Insert the needle
-You will feel a slight tingle with the needle and then the area will be frozen
-We will then do the biospy taking 5 for each lump.
-Followed by 3 pictures
-and a mammogram

Ok can I pass out now. What they didn't tell me until now was that they would only be freezing the SPOT where the biopsy needle goes in NOT the whole breast.

The the doctor came in and explained the exact same run down only he got he to sign a waiver. Hmm if I accidentally kicked him is this in the waiver?

He then demonstrated what the sound of the machine would be like so I wouldn't jump. My mouth began to get dry and I don't remember the room starting to spin....

It sounded like an air compressed nail gun.

So then we began. The technician did all of the maneuvering to get me in. She barely put the clamp on and I wanted to scream for my mommy. We finally got adjusted and she said.."You can breathe". Like that was going to happen. After about 30 mins, my legs started to shake as I am not going to lie that while I didn't feel the biopsy needle I did feel everything else..aka my boob stretched across a metal plate that was squashed with a piece of plastic. My breast bone shoved into the metal plate like it was trying to become one with it.

After 45mins I hadn't gotten to the "picture part" yet and asked "how much longer poppa smurf"..about 10 more minutes...just hang on. WHERE WAS I GOING? I continued to close my eyes and hang on.

I have never felt such relief when they took off the clamp...until I looked around. This was the first time I have had my eyes open since they put me in the machine and I was surprised to see all of the blood. There was blood on me, there was blood all over the machine, on the paddles, on the prongs attached to the paddles. Good thing I am lying down!

I then get an ice pack and a towel. I look at the two new "tattoos" I now have. They inject you with dye in case you have to go for surgery it will act as a guide. My first tattoo and it is a dot...how sad.

I finally get my sea legs back after a couple of minutes and the technician has already decided she is not taking any chances and is going to wheel me into get the mammogram. I think she was worried about having to pick me up off of the floor...and I don't blame her as it was a possibility.

She the squeezed me into the dreaded mammography machine took three quick photos and said...whatever, they can see where the dye is. Did I mention this woman was great. Then she had to clean off that machine of my blood ...but it was just a couple of spots..

Then wheeled me back to door number one. Stuck the ice pack back on ...gave me a moment while she checked on the radiologist and voila...I was out of there.

Now I had planned to go back to work after this....but as I walked down the hall and wasn't quite sure my legs were going to make it...I thought not such a wise idea.Then when I got in my car and realized shit its a standard...this is going to hurt...that maybe I should have brought someone with me.

I was told I would have the results in 7-10 days

Now I wait.

Next Step

So I did a stupid thing and looked up what is involved in a dual core biopsy. I figured I was going to be clamped to a machine for 45mins I should at least have an idea of what it is going to do to me..right? WRONG.

I went on YouTube and watched a video of how it is done. This was my first mistake. It is one thing to be handed another clip art brochure which outlines the procedure, it is a whole other ballgame to actually look it up and see it.

Basically here is what it looks like....this is not for the squeamish

http://youtu.be/69cNo1h5pzc

I was told mine would be guided with a mammography machine but really...how different could it be? This already looked painful, could mine be any worse?

Turning 40. July 4, 2011

So the morning of my birthday, I call Dr. B only to find out he is still stuck out of the country and wont be back for another week. I explain the fact that I believe the lump has grown and is now painful. It is amazing how these words send everyone into a quicker reaction.

The next thing I knew I had the breast screening booking number and had been referred 2times BUT had an appointment for that week.

I had never had a mammogram but heard the years of stories from my mother telling me it is like having your boobs squashed to the point of screaming..then hold your breath. Seriously!

So in I go. July 7, 2011.

I am told to be there 1/2 hr before my appointment to register and it is a good thing because the waiting room is full. I get to the counter and I have a new person who cannot seem to find the ultrasound part of my appointment. She asks for help and another woman comes over and says "After her mammogram if she needs an ultrasound they will take her in so book her for both". What! So you don't need to have both appointments booked. Gotta love our medical system, where no one talks to each other.

I am then told to go down to the end of the hall where I put on a gown and robe. I get back to the main waiting room and look around to see a variety of woman sitting there. Some young and some old and I wonder "how many others are in my situation". What I also notice is how many women have put their gowns on backwards and all I can think is "thank god for the robes". I did not want to see national geographic show up..or should I say down.

Eventually my name is called and off I go down the hallway to a darkened room. Inside what looks like a Venus fly trap with a lite stock is waiting for me. The "stock" is actually lite up and the machine itself does not look like this is going to be pleasant.

The technician I had was great and was aware of my lump, filled out some forms and then we began. She forewarned me there would be 6 pictures in total. Normally there are 4 but because of my lump there would be an additional 2. Lucky me!

She then lead me to the machine, I dropped my robe and gown and put my hand on what I can only call the 'holy fuck bar'. Then she plops my breast on the machine gradually closes the paddle over it and goes behind her screen while tears well up in my eyes. I grip the bar for all I am worth ..hold my breath and think OMG...5 more times. Wrong! My breasts are dense and she couldn't get a clear picture, but will put it on manual and see what happens. What is going to happen is that I am going to pass out!

Luckily the manual setting worked and the good news is that I you don't have a lump in your breast it is clearly uncomfortable but not excruciating. If you do have a lump...bring kleenex.

You then go back to the waiting area where a whole new set of faces are staring at you and you think of a cattle call. How many are herding through here in a day. The report comes in and..Yes it appears I have lumps...wait...lump-S?

So off I go to the ultrasound where this time it goes much better as a new technician waves her magic wand around digging in only occasionally. Plus I think my breasts are still numb from round#1. She takes several pictures and then goes to check with the radiologist to make sure the pictures are to their satisfaction.

Next thing I know the radiologist and the ultrasound technician are now in the 8'x8' room with me on a table and the machine. He takes his turn at waving the wand around....no fairy dust is coming out....but he is having issues getting pictures. The next thing I know..knock, knock, knock, Dr ?. So now I have a Dr, Radiologist, technician, me, the table and the equipment in the room. This is not a clown car people! The Dr again...waves the magic wand which by this point I am ready to beat them with....stops ..and tells me "As you have probably heard, you have two solid masses and will need to have a core biopsy to determine if they are cancerous" and walks out the door with the radiologist......ok.....

Next the technician hands me a pamphlet -these people need to stop using clip art- and explains the core biopsy procedure. I am already cringing.

I call B after the procedure and he says "How was it". My only thought was picture this...take your penis, stretch it in all directions as far as it will go and them SLAM A BRICK ON IT!

Where did it come from. June 2011

Again I was doing my regular shower boob wash. Now don't get the wrong idea that I spend a lot of time in this area. It is literally a quick swipe with the soap. The soap went across my right breast and I thought "Was that a bump?".

I did a quick breast exam and thought "That definitely feels like a lump"...now what?

I checked it daily and after about two weeks, I mentioned it to B and had him feel the lump. Yup it was definitely a lump.

It is funny that until someone else feels the lump it was not real. Yes I found it, t felt like a lump to me but I am not one to rush off to the doctor every time I find something. I like to make sure it is going to be something before I go.

I called my doctor the next day to make an appointment, only to find out that my regular doctor had left the building...and province. WHAT! But "not to worry" Dr. B had taken over her practice and he was "lovely".

HE?...HE? Since I was a young woman I have always had a female doctor now I was about to meet a doctor for the first time and have to whip out my boob for him. I realize this was not a rational thought at this moment but I thought...I can do this after all my husband switched to a my doctor who is female...but wait he didn't have to show her his penis...breathe....make the appointment.

So off I went to meet my new doctor who doesn't speak the best of English..and sure enough I had to take off my top and show him "the girls". Most people meet and have a handshake. I handed my boob over. Hey how ya doin'.

He felt up and down, I sat up and laid down, he compared right to left and left to right and yes there was a lump. He would recommend a mammogram and ultrasound and I should hear in about two weeks about my appointment.

Ok thanks!

So two weeks went by and I thought...hmmm. So I called the office only to find out
1. Mammograms and ultrasounds take longer to book than two weeks. On average it is three-four months and they contact you a month before the appointment.
2. He wrote on my file a referral was needed but DIDN'T WRITE IT UP

WHAT!

SO now I needed to come in and see a different doctor to have them do up the referral..because did I mention my doctor went away until July 4th. So now I was going to have to go through the same procedure again.

SO off I went- touch, touch- Feel, feel-yup you have a lump. History in the family?nope. Ok then. She wrote up the referral ...watched her do it and she said it would take 3-4 months but she would back date the referral to the original appointment date.

Ok now we're getting somewhere.

Having a lump in your breast makes your mind go to all sorts of places from "it's just a lump" to "am I going to die?". My mother has a history of fibrocystic breasts so most of my brain believed this is what I had. Mom told me if I was that concerned I should call and see if I can just get a mammogram to put my mind at ease.

So I thought..I should call the doctor, but he is away until July. I called the next day to see if any appointment had been made and yes. October 5th was my date. In my mind that was a long way away. After talking it over with B and Mom I decided to take matters into my own hands.

I called the breast screening clinic and she typed in my health number and it came up that I had an appointment on October 5th. I told her I just wanted a mammogram and she recommended not breaking my other appointment as if I break the two it could be a long wait for the ultrasound...if you ever get this answer..ignore it as this is not true. I'll explain later. I also tried to go to the private MRI clinic as I was willing to pay for an ultrasound...but FYI they don't do ultrasounds on breasts.

Then I rolled over in bed one night a week later and OWW. What the hell was that. I looked on the sheets and there was nothing there..and thought--strange. I laid back down and again..OWW. So I felt my breast..I seem to be doing this a lot and getting nothing out of it. ...and the lump hurt when I pressed on it.

Since I was heading into the long weekend I decided t was only a couple of days away so I would wait until July 4th...which happened to be my birthday ....my 40th birthday.