Be the heroine

Picc line all good

So I had my weekly picc line cleaning today at the clinic nearby and I was nervous! I just hoped it was all good - I am paranoid about infection. The nurse cleaned me all up, flushed the line and put a new dressing on. She said everything looks good so I am happy! She also did a much more comfortable wrap on my arm (the previous dressing tape was pulling my skin and I couldn't get my arm straight).  Hopefully this will help with mobility and sleeping :)

If I am being authentic....

I'd love to write an inspirational post but I feel I need to vent a bit. 


Going through chemotherapy is so much more than the physical aspect of the harshest of harsh drugs being pumped through your system every two weeks.  There is the physical fall out of that - and with cycle three I had to dig deeper than ever to manage physically, with the added stress and discomfort of the picc line, and my body just being cumulatively weaker.  But the mental/emotional component also beats you down.  I am finally feeling more like myself this cycle, but it is a head game to get yourself back to a place of determination let me tell you!  The side effects of the AC combo are multiple, and I've written about some, like the fatigue and nausea.  I've noticed other changes as time goes by with treatment, like feeling bloated, feeling hot/hot flashes, even with a bald head, having trouble sleeping, chemo brain/foggy brain, and at times a faster heartbeat, especially if I try to do things that exert myself in this hot weather (which I am doing less and less of).    I had no idea what chemo was really like until I walked through it myself.  My cousin Carmen did this for years - and I can officially say she is my hero, and hopefully one of my guardian angels that is sending me the strength to keep going.


Given the physical setbacks, I feel like a lot of my life is on hold right now.  With the picc line I have even more restriction in terms of what exercises I can do, and what I can lift, how I sleep.  Part of the mental struggle is not being able to do what I want when I want to do it!  That means day to day stuff and big stuff, like life events.    It is so darn hot out that I can't even walk Mimi some days.  I need Jeff's help to carry grocery bags.  I had good intentions of doing yoga or pilates and that is out with the picc - walking is my only option.   In addition to the day to day stuff, I just feel like summer is passing me by this year.    I am looking ahead to October when chemo is done, but sometimes it feels pretty far away. And I don't want to just wish the summer away.


This weekend one of my best friends is coming to visit, so that will be a good thing for me! Will be nice to connect, watch some bad tv together, chat.  A nice break from thinking about chemo!  Jeff told me to enjoy my down time as much as possible, and to not think or focus on cancer.  Sometimes it is hard to shift that mindset.  This post may seem a bit whiny but this is my authentic feelings about this annoying situation right now.  I always believe it is worth being authentic, to get the feelings out and then move on.


I can't wait to be done with the evil AC as it is called in some breast cancer circles, next week.  I get an extra week off at the cottage, and I am hoping for peaceful and relaxing time there, where I can regroup and get ready for the 2nd half of my chemo.


Ok, rant over.  I want to close this post with something positive.  I heard the most beautiful song that made me feel so emotional and wanted to share the lyrics here.  At the end of the day, despite this current struggle, I still remain hopeful and grateful for everything life brings me.


A Life That's Good

Sittin' here tonight,
By the fire light,
It reminds me I already have more than I should.

I don't need fame, no one to know my name,
At the end of the day,
Lord I pray, I have a life that's good.

Two arms around me, heaven to ground me,
And a family that always calls me home,

Four wheels to get there, enough love to share
And a sweet sweet sweet song

At the end of the day,
Lord I pray,
I have a life that's good.

Sometimes I'm hard on me,
When dreams don't come easy,
I wanna look back and say,
I did all that I could,

Yeah at the end of the day, Lord I pray,
I have a life that's good.

Two arms around me, heaven to ground me,
And a family that always calls me home,

Four wheels to get there, enough love to share
And a sweet sweet sweet song

At the end of the day, Lord I pray
I have a life that's good

At the end of the day, Lord I pray
I have a life that's good

Just what I needed

One of my staff has sent me a few cards,

Probably one a week or so with inspirational messages. Today, I received this one - just what I needed. 

It's been a harder turnaround from chemo #3 and the picc line has made sleep difficult. Digging deep to keep the spirits up, and this definitely touched me today. 

Chemo #3 complete

Well Chemo #3 is complete but wasn't as smooth as I would have liked.    I told the nurse about the soreness in my left arm, after having chemo 1 and 2 with the veins.  So they tried to find a vein on my right arm - and that DID NOT go well.  4 pricks later, by 3 different nurses, and it was time to give up.  They were able to get me in for a PICC line (although it was a 2 hour wait and delayed chemo til the afternoon).  Long day at the hospital! We arrive at 8am and didn't go home til 3:15pm.


I was nervous to get the PICC line - it is in my arm and they basically insert a tube through my vein to my chest, and they can use it to take blood and give chemo.  even as I type it, it sounds gross to me!
It is weird to have something in my body.  I am getting use to it.  Chemo did go much smoother though.  and it will save my arms from vein pain.  The nurse who did it was so great, she kept me distracted with funny stories from her home town.  She also told me her friend had breast cancer and did it through IV/veins and she still had arm pain months later.  So I am trying to focus on the benefits as much as I can.  the sad news is I can't swim while I have it in, so no swimming at the cottage this year.  I guess I can dangle my feet in the water.  To shower I have to wrap it with cling wrap.   I also have to get the dressing changed once a week (and had to have it changed yesterday, one day after going in).  So yesterday a nurse came to my home to do this, which was great because I was just too tired to go out.  Next Friday I can go to a clinic nearby for the dressing change.  The other downside to the PICC line is I feel it makes me look sick! I have a bandage on it and I have covered it with an arm band, but still, just another reminder that I have cancer!


The whole experience has give me a lot of fatigue, so I haven't been doing much the last couple of days, just trying to recuperate.


I am hoping the rest of the chemo sessions go smoothly.  I am 37.5% done!  one more to go before the cottage break. Then I will switch to Taxol in late August.


Here is a photo of my with my PICC line and also a photo of my beaten up right arm!

My new hobby

I've always heard it is a fun one and can reduce stress/be meditative. I am doing adult colouring! It is very relaxing and fun to do and I think I will be spending a lot of time doing it during treatment :) 

Side effects and off week - Chemo #2

Side effects have been similar to round 1, fatigue and nausea for first 4-5 days, and a bit of tingling in my feet here and there. I lost all my hair this round, including the shaved hairs! I still have my eyebrows and eyelashes for now, I hope by some miracle I can keep them, because I feel like losing those makes you look sick.  And believe it or not I don't feel sick! I feel the effects from chemo but I feel like my body is temporarily on hiatus or something. I know the person that used to workout 5-6 days a week (doing Jillian Michaels no less) is still in there!


this week I did feel well enough to weed the garden and I also have done pilates once.  the pilates was hard!  the chemo drugs are making me into a weakling, but I have faith it is a temporary deal. I have also been walking Mimi which I think is great exercise for where I am at physically at the moment.


One other side effect I have this time is a sore arm and IV spot from chemo.. I think it may be because they used the same arm for both rounds - I hope they can use my right arm for round 3.  I don't have very noticeable veins, that is part of the problem. The sore arm is more annoying than anything.


If my off weeks continue to be like this I am lucky.  Funny to use the work lucky for a cancer patient but that is how I feel.  I think as part of my emotional and mental coping it helps to remember what I am grateful for.  It is not all bad news and feeling lousy.


I am grateful for the days I have a bit more energy and no nausea.  I am grateful that I can still do some moderate exercise.  I am grateful for positive messages, vibes and prayers from family and friends. I am grateful for Jeff being here for me and for him shaving his head all the way down this week!  I am grateful for puppy love.

A little inspiration

I've been lucky to have received many cards and emails and texts from friends and family with positive encouragement. All the positive vibes help and build up my resolve to beat this thing.

This week I met my friend Shannon for lunch and she gave me this framed photo for inspiration. I put it up in my bedroom so I can look at it each morning and night  - I love it! Maybe this is my slogan :)

I also got myself a bracelet with the phrase "trust your journey" - it is from a website I came across and here is alittle bit more about it:

 "For every woman that has struggled, questioned, realized, believed, accomplished and triumphed…Trust Your Journey. An inspiring message from two women, a cancer survivor and a young widowed mother, who have dealt with challenging turning points in their lives and discovered along the way that sharing inspiration and stories of hope are an incomparable way to give. Trust Your Journey is about YOU! Our vision is that our brand and our website will inspire you daily to be grateful for what you have but mindful of what you can become. Life’s challenges come in all sizes, shapes and colors. You are a unique woman on a journey to be duplicated by no one but shared by many. No woman is alone in her life’s journey. There are always others who have been in your shoes or are currently facing the challenges you are facing. Together we will find strength in sharing our stories, our journeys and knowing that all things are possible."

The oak tree

Frustration and impatience

So if I am being honest, I had a few self pity moments during the first 4-5 days post chemo #2.  I get so tired of feeling unwell!  Pre-chemo and pre-diagnosis I am typically a busy person who likes to exercise, work, socialize, do errands, be independent. Having to force myself to rest and actually often not being able to do what I want to do when I want to do it really tramples all over my spirits.

Now, day 6 past chemo, I feel more like myself. Just like on cycle one. It is hard to remember that this day does come, when I am not feeling good. I should only be so lucky to have a decent off week for the remaining 6 cycles. I am now in this moment feeling grateful for some relief and for a good day. 

I saw this posted on Facebook yesterday and it is a good reminder....

Goodbye hair!

On Saturday I went to get my head shaved and picked up my wig.  It probably took all of a minute for her to give me the buzz cut! lol

I almost cried but didn't. I also picked my final wig which is a bit darker than the others I was looking at. I like it. It does feel a bit weird wearing it but maybe I will get used to it with time. When I am around the house I may just go bald. It actually feels kind of nice to have no hair, and feel the breeze on my head! 

I also got the shampoo to wash my wig, which I need to do every 7-10 days. They also had shampoo and moisturizer for my scalp which is nice. The moisturizer feels so good.

Trying to be positive about the hair loss. It is a necessary thing I know and it will grow back. 

Chemo #2 complete

Yesterday was my second chemo session.  We arrived at 8am and I had my blood taken shortly after that. While we were waiting for the blood, I met with Dr. Amir for a quick checkup.  I mentioned all my side effects and he didn't have any concerns, all seemed normal.  He did give me a different anti nausea drug to take at bedtime as I said the other one wasn't too effective. 


I had noticed in the last few days that the lump had shrunk and he did an exam and confirmed. it is crazy just one round of chemo did that much, but I am very happy it is working. Jeff and I joked about not having to do the last 7 chemos and the doctor said unfortunately that's not the case lol.


We waited around some more and eventually got taken in to the chemo room, and did some more waiting. I think chemo started at 11am.  I brought a book so that helped to pass some time. I want to take a picture of the actual chemo bags if I can do it subtlety. the first kind is red and has to be "pushed" in through the IV by the nurse. the second one is a clear bag, similar to the fluid bags they have, and takes about half an hour to drip in. 


While I was on the second bag, the hospital social worked visited me.  She had been on vacation so this was the first time we could connect.  We had a nice long talk and she helped me, just listening and offering some suggestions here and there for me.  I could be referred to the hospital psychiatrist for sessions if I want so that is something I might consider.  Counselling helped me a lot when Angel died so I will do something, even if it is EAP.  there are emotional and mental parts of this journey too, and in a way similar issues to when Angel died - feeling like my body has let me down, feeling like I have no control over things, dealing with not so great reactions or comments from friends and family, grieving certain things, like my health, my hair, my normal life, etc.   I know dealing with all the feelings is going to help my healing.  I have highs and lows.


I forgot how bad day 1 is.  the chemo makes my whole bottom feel heavy, almost like I am pushing against gravity coming down on me.  The fatigue is intense.  I went to bed at 8pm, and was up a few times in the night, but didn't get up again til 8:30am!  Today is a bit better, although still fatigued and on and off nausea. I am sticking to neutral foods.   I also gave myself the white blood cells shot at home today! so that was something. It was pretty easy actually.   And way better than going into the hospital again.


So today I washed and dried my hair and lots came out.  It is a bit unnerving to have it thin and fall out like that, so I've decided to go to get the shave and pick up my wig tomorrow. I don't think I want to deal with it falling out over the next few days.  If I do it proactively, I feel more in control.  I am sure it will be emotional but it has to be done, and in a way it is just another step to continuing treatment and getting better. It won't be forever!!

Side effects

So round one of chemo the main side effects I had were nausea and fatigue, which was the worst the day of and day after and slowly started getting better with each day. I think by about Wednesday I feel like myself again except for a bit more tired than usual. That is something I will just have to manage and only do what I can each day, not push myself too much.  The one other side effect so far is a tingling in my feet. The doctor mentioned this might happen in the feet and hands, so I will mention it at my next chemo on Thursday. I am hoping  the side effects don't get much worse than this but we will see. I know as things progress my body may be less resilient so it is hard to predict. 

I still have my hair! Which is a bit surprising as I expected it to be falling out  already. Maybe a few more days.

Mimi

My dog Mimi has been stuck to my hip these days! I guess dogs know when they need you. Most nights she wants to sleep in bed with me or at least in her bed in the bedroom, rather than her cave bed downstairs. During the day she follows me around, and if I sit down in the living room she has to sit in the lazy boy with me, even though there are 2 other couches and another chair! 

It is comforting though to have her as a companion. She also encourages me to exercise as I walk her twice a day most days, except around chemo when Jeff helps out.  She helped me so much after Angel died and she is helping me now to cope with this illness. I don't know what I would do without her! 

Work

Believe it or not I actually miss working. I have been off now for just over 3 weeks, and I started to think about things a bit today, now that the flurry of tests and treatment schedules is all worked out. I was thinking about my empty office and what people think when they walk past my closed door. I have a calendar of 6 months on my wall and I was trying to remember what was on it and coming up next. 

This diagnosis happened at the tail end of one of the busiest times in my current job. I guess you can say I went out with a bang? And I know I have a great place to go back to when I am ready. 

I love my team. The card they sent was so genuine and meaningful. I continue to be in touch with many of my staff and colleagues who want to know how I am doing.  I truly hope things are going well and that the projects we had underway go ahead while I am gone. 

I love my job and it gives me a lot of satisfaction. I know I couldn't do both though and I need to focus on getting healthy right now. As Dr. Amir said, I need to live 40 more years and I have to focus on beating this thing now, work will be there when I am done.

This week I received flowers from my ministry executive team - the deputy minister and assistant deputy ministers. I am so touched they did that, their support means a great deal to me.

Live like you're healing