Wigged Out

Today is Easter Sunday, and my hair is falling out.  There was almost a full handful on my pillow when I woke up this morning.  I am afraid to brush it or wash it as I am sure even more will come out beyond the hairs that seem to be following me everywhere.  It’s kinda like the Charlie Brown Christmas tree, every time it is moved there is a little tinkling sound and a few needles fall out; only I have hair falling out.

It’s not like I haven’t been preparing. Since my meeting with my oncologist who told me that within 2-3 weeks of treatment my hair will fall out, I have gone to a few wig places and tried on wigs.  I know which one I will purchase.  I wanted to not act right away, you never know, perhaps I was going to be one of the 10 - 2% who don’t lose their hair on these drugs.

I had a feeling this was going to start on the long weekend.  On Friday it was clear to me after my shower that my hair was falling out.  Saturday I called the wig place to find they are closed until Tuesday.  I have my blood work and doctor’s appointment on Tuesday morning, so I am hoping they can fit me in Tuesday afternoon.  What if they can’t? Will I lose all my hair without having a wig?  I’m not prepared to do that.  I have places I go that where they have no idea that I am doing cancer treatments and I want to keep it that way. I do think I am entitled to creating a few cancer free zones.

The other piece of this is about self-image. The whole treatment can wreck havoc with one’s self-image.  I think I have generally had a pretty secure sense of self-image and have been fairly comfortable with my body, especially in my adult years.  But the surgery scars, that are tell tales of what I am going through.  If I find myself dating again, I’m wondering about the whole developing intimacy with these new pieces of myself; the kind of heavy conversation that could ensue; although it could be a way of gaining deeper connection and a way of screening out anyone that does not hold a deep philosophical reverence for what I have been through. But that is future and hard to really hold onto when presently I am losing my hair at a furious rate.

Then there’s the fact that a number of the drugs that I will (or am) taking will put my body into menopause, even though I’m a little early for such happenings.  This I struggle with because likely it means I will not have any more children besides my one.  I haven’t seen myself really wanting to develop a new relationship or been feeling I need to have a second child, but that mere option needs to be mourned and released.

What am I doing with all these feelings and thoughts?  Well I’ve been walking it out, had a good cry and some time to meditate.  I have also voiced my sadness of the changes to friends and worked with them on reframing this. Going on the theme of rebirth (emerging from the chrysalis), often people will have their head shaved as part of ritual to initiate change in their life. My hair loss can be a symbol of the internal rebirth I am working on through my treatments.  I reminded myself today in conversation with a good friend that spring is about rebirth, as is the Christian Easter.  Birth is not an easy process for the mother or the baby.  It requires a lot so hard work, nurturance and effort.  This is a reminder that this rebirth is not going to be easy.  The treatments are harsh and they will challenge me.  When I remind myself of this, I find that I am OK with this process again. I guess this part of my growing pains.

The Cost of Cancer

So I have been reflecting on the costs of this disease.  If I start reflecting the costs overall, it might be a little overwhelming, so I’m just going to keep it focused on the present.  What I am aware is that I am eating away at my “lump” of savings quite well in the past months.  I knew this would occur once I started to figure out the timing of my various income sources or the lack thereof. I think this is what financial advisors call your “emergency fund.” I can’t say I’ve ever formally had an emergency fund, but I know that I have always try and keep my general account that I use daily above a certain large amount so that if there are emergencies I can access it immediately.  Now is one of those times that I will acknowledge I am going to let my account drop below said level because this is what the “emergency fund” is for.  I have wondered what others do in these situations, as I am aware of friends (and others) who are living paycheque to paycheque. Thankfully I am a good little saver, for the most part.

What does this work out to be on practical terms?  I will share some loose numbers to give you an idea.  I hope this could be useful in understanding why financial advisors suggest having 3-6 months of salary as your emergency fund.

My last paycheque was February 15.  I believe my first employment cheque/deposit was around March 20.  It is great to have Employment Insurance for the sick/illness leave for 15 weeks as my workplace does not have short term disability, only long-term. However, there was a  full month of expenses to cover without any income.  My long-term disability claim has a waiting period of 120 days (loosely 16 weeks) from the last day I worked, so there will be some overlap between Employment Insurance and my Long Term Disability. Sounds not bad, right?

So, Employment Insurance (EI) is 55% of your gross income to a maximum amount that works out to be $1725/month, it`s not hard to be receiving the maximum amount of EI benefit.  Add in the fact, I have to pay my company the full amount of my health benefits coverage and long term disability costs to maintain them, which is the lovely sum of just over $700 per month.  It may be obvious, but not maintaining benefits is not an option. So, now I am now living on about $1000 plus whatever child tax benefits etc.  per month until the long term disability kicks in (which is 2/3 of my usual paid work income) and long term disability pays out monthly at the end of the month. So even though I am being covered by LTD come June (assuming all is approved) and  I could collect the EI payments into June, but then the government will want me to pay the EI overpayment (where EI and LTD overlap)  back.

I’m sure if one applies the expenses of mortgage or rent, daycare (which I fortunately have subsidized and have worked very hard to have the subsidy amount reduced and my case being seen as special needs), food, gas, car maintenance and/or payments, utilities, etc. It becomes clear that three months income is easily the amount spent in these sorts of events despite having social supports.  Apparently this is what to expect if one becomes unemployed too.   All good reason to ensure one has that emergency fund.  Now I’m starting to wonder how I can build this up again once LTD kicks in, because apparently I have a knack for finding myself in these sorts of crises.

Sh*t Happens

This morning started fantastic. I had my loving angel child snuggling with me, being cooperative and eating a good healthy breakfast.  I am emotional today as I am getting my genetics results and there is now a request to put in port (for chemo and blood samples) for tomorrow that I need to make a decision about.  I go upstairs to get ready to leave, find myself taking a call with a medical professional to discuss this port thing in more detail and to make a decision for tomorrow.
While I talk on the phone, it seems too quiet so I make my way downstairs to see that my angel child, that sweet little guy, has pooed on the chair he likes to stand on in the kitchen.  He has poo against the sliding door, there is poo in his hand, he is gleefully tearing around and smearing! I am still on the phone at this point getting pertinent information and coaching him to stay in the kitchen – all I need is for him to dash to the livingroom carpet and upholstered couch – and the patient scheduler of this procedure is being told, “I’m sorry, potty training issues” and keeps hearing, ”Stay in the kitchen”’ very firmly in her ear.  Once phone call is finished I take said angel child to the bath and promptly find myself crying.  A call to my dad calms me, he drives over and takes over getting the little guy to daycare.  I spend my morning making my kitchen spotlessly clean and disinfected. I wonder if this is a reflection of what little guy feels about all this medical intervention his mom is involved in?

So today has been a mixed sort of day.  I should let those who are following know that I am doing well post first session of chemo.  I was concerned about catching a cold with a cough arising yesterday, but that seems to have passed.  Perhaps I need more sleep.  Yes, I was incredibly fatigued on Sunday – you needed a spatula to lift me up out of bed.  Then Monday I had boundless energy – I’m guessing the impact of the drop in white blood cells and then the drug that replenishes them musta kicked in. However my auntie, who had the same chemo regime a few years back, tells me the white blood cells drop in the second week and this is when I need to be ultra vigilent about infections.

The genetic testing results are negative, so that means I am not being recommended to do more surgery. Hurray!  As I shouldn't drink a celebratory glass of wine I opted for dark chocolate and dried cranberries for a treat. Because of the family history clearly has a genetic predisposition to breast cancer, we (my family members) are being asked if we’ll volunteer our blood to do more genetic testing and so researchers can try and understand what is going on with families where there is a lot of breast cancer but not BRCA 1 or 2. The genetics team I've been working with says they have about 20 families like this.

About the port, the port thing allows for blood to be taken and chemo drugs to be administered rather than being poked by needles each time.  I know this is going to be better for me and will eliminate being poked for everything in the next year; and I won't look like a junkie with track marks all over by the end of my treatments; however it is a medical apparatus that is on my being 24/7 for the next year and a bit.   I am not liking the idea that I will physically have something on my person to remind me of the treatment I am receiving.  I guess it makes the job of keeping positive and keeping “normal” a little more difficult.  Another challenge to wrap my brain around; breast cancer treatment sure does a lot to impact one’s self image - more about that and wigs soon.

Shifting the View

On my last entry, I was writing about my fears and concerns with chemotherapy. Even as I wrote that entry, I knew that I needed to change my attitude to be more favourable.  I just couldn't figure out what would be a positive spin on what was about to occur.  In studies, there are indicators that the more positive the patient is, the better they respond to chemotherapy and the less side effects the experience. To me, this is a challenge to then find a way to view the chemotherapy in a positive manner before chemo starts.

I think I have finally come up with a visualization with the help of some friends.  I am thinking that the chemotherapy drugs are entering my body to find the last dregs of negativity and of ill health.  I am going to view this as a violet liquid - I've been advised violet is strongly associated with healing - and imagine this as the injection occurs.

Now I am picking up on this post the day after chemo.  All in all considering, I think it went well.  Definitely feeling nervous to go in, not knowing how the drugs may affect me and the various side effects that may arise. How did it go? Well, I think. This is what I ended up doing during chemo. I went with my parents, several people have advised me never to go alone.  We waited awhile, I think for the hospital pharmacy to mix the drugs.  I started reading my Bernie Siegel book, Love Miracles and Medicine.  I also had prepared a cd of me reading one of his visualizations.  The day before the chemo treatment I met with a woman who does hypnosis, reiki and other alternative healing who gave me a combination of flower essences that she has used with others to help manage in impact of chemotherapy. 

When I went into have the drugs injected, we were sitting by a gregarious older man and his daughter.  He had a great sense of humour and kept a lively conversation, asking why I got special treatment by the nurses (upon receiving a popsicle and blanket to help manage side effects) while he had been coming for almost a year.  I joked back it was because I was a newbie. So not as much visualization as I thought, although I did imagine the injections and drip being able to clear any remnants of disease or negativity out of my body.  If I have bad side effects, then that is just my body emptying the "yucky bits" from my body.  So far, so good, only mild nausea and tiredness.

chemotherapy

This is a hard post to write.  I think I have been avoiding the topic of chemotherapy as I know the impact on one's body can be strong.  I am daunted after meeting with the medical oncologist; I feel confident in his suggestions for treatment, but it is overwhelming.  What it boils down to is 8 different drugs, the IV ones to be administered over the course of a year.  I was not expecting the timeline to be so long.  Then there is an additional drug to be taken orally for 5 years.  Why so much? Because the tumours were very aggressive and it improves my survival rate to be almost perfect.
However this comes with a big price in how it affects my body.  I am likely to start losing my hair in the next few weeks.  I will likely have nausea and other side effects.  The drugs will likely put me into menopause (that is seen as a more favourable response), and heart difficulties can develop.  Really, this is so much to happen to my body, when I barely take a Tylenol for a headache.  It also sounds like the fatigue can be fairly intense, so I need to come up with a plan for who will care for my son (and me) if I start having severe fatigue and vomiting. I apparently also need to be vigilant about a variety of things that can create infection as my white blood cells will be significantly decreased by one of the drugs. This is plain overwhelming. I'll see how this sits in a few days.
My plan now (besides the practicalities of finding a wig before chemo starts and rallying my troops to figure out who can commit to supporting me and when): to figure out how all this can be visualized as favourable to my body rather than "these things that are just happening to my body because the research shows this improves my outcomes".  I have some distance to travel in my mind to get to the kind of imagery that I want.  I know I need to counter the feelings of dread by visualizing positivity for this process.  As I write, I was wondering if I can imagine some sort of hydroponically fed plant that will gloriously bloom from the IV feed.  I'll have to work on this one.