Tuesday, November 22, 2011

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.

Thursday, November 17, 2011

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!

Sunday, November 13, 2011

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.

Friday, November 4, 2011

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.

Tuesday, November 1, 2011

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!