Shaved head (and other things I wouldn't have thought I'd do)

Yesterday my Dad shaved my head to be a smooth as a baby's bottom.  I'm sure he never thought he'd be doing that to his daughter in this lifetime.  It made me reflect how with extreme situations we do things we never would have dreamed of doing. For example, I ended up giving my husband needles of a off-list drug that was being given to him by an alternative cancer treatment doctor.  The home nurse couldn't do it because it was an off-list drug. Nonetheless, I abhor needles and the thought I'd be administering needles to a loved one is something I would have never dreamed of happening.  Of course, I would have never dreamed (or even nightmared) the circumstances of my life in the past few years.

That aside, why did I have my Dad shaving my head? To have a henna crown of course. It was on a whim, I noticed this Facebook ad for http://www.hennaheals.com/ and I thought that sounds interesting. So I checked it out.  Apparently this new start-up company was looking for people to volunteer for henna crowns in exchange for pictures and a survey filled out. So I volunteered - by summer, with their official launch they will be charging for this service. I'm actually quite pleased with how it looks. And maybe I'll exchange the snow heart for one of these pics.

When the henna is wet:

When the henna is dry (the final product):

Telling Others

This has to be the toughest aspect of having difficult life situations, telling/sharing with others.  I keep feeling there is this look of horror in my friends, family and others' eyes when I share what is going on.  Generally I'm a fairly open person, and it's not me to lie about what is going on in my life. In turn, this sense of not being able to share without the reflection (in other's faces) of "how can this be happening" often prevents me from putting myself out there because it is hard to share, and more difficult to see the reaction of others.

What do I want?  To know that my friends, family, colleagues, and others whom I share with are going to be positively supportive.  To know that they will check in on me, since I don't always have the energy to reach out; to know they are thinking of me and sending out positive vibes; to treat me the same despite what has occurred in my life... I guess the sympathies of others kinda grate on me.  I'd rather laugh about how absurdly difficult the curve balls are that life swings at us.  I'm mean really, I lost the love of my life to cancer (thus far, though I can be optomistic that there could be a time in future that I could meet another fantastic man), now I have a bout with this disease (although totally different outcomes are anticipated as my husband had a rare cancer and I had a well researched, early detected cancer - "had" as it was removed with surgery months ago now); and my work is to help people emotionally to address trauma in their lives yet I have a whole big mess of my own emotions to sort through with all of this.

I'm writing this post now because there are now two opportunities to meet with friends from long ago - well people I haven't seen in 10 years or more.  One person I have agreed to meet - she doesn't know about what is going on, but I will share with her when she comes to town. The other is a group of friends from residence at university. There is a closer group within the larger group that knows of my diagnosis, the rest do not know.  I guess I've taken the route of the closest to me knew right away, then others whom I'm likely to see, everyone else is on a need to know basis. I actually would like to go and see this larger group of university friends and look forward to hear what they are doing, but I don't want to bring down the conversation in our few hours at a pub with what all has occurred in my life. Nor do I want my closer group of friends being put in the place of fielding questions of how I am if I’m not there. I am tinkering with letting the larger group know ahead of time and sharing this blog. So there's time to digest and "be normal" by the time we meet and I can look forward to seeing everyone with a little less anxiety and feeling weird. So when I stomach the edginess of sharing, I will type up something to the university group and hope it goes well.

resolution to dilemma

Yesterday I posted about the dilemma of being a single parent and having a child who is sick and wondering at what point do I have my child stay with a family member.  This decision made was primarily motivated by concerns over risk of infection.  As it turned out, my sweet child was very ill and in the middle of the night wanted to come to my bed. That lasted for awhile and I ended up going to sleep on the couch. I found I was too concerned every time he breathed on me or coughed.  Throughout the day, yesterday, I was constantly hand washing and sanitizing.  My folks were suggesting I could find a facemask to wear to protect myself.  Tomorrow when I meet with my oncolgist, this will be one of the questions I have to determine how much can I expose myself to and what should be my limits.
What was my decision? Well after a rough night I knew my son had to be elsewheres.  After throwing up 4 times this morning, my decision was quickly confirmed.  I suspect that I should of had him stay with family sooner, but I really didn't want to have him not be at home. The positive thing is that I was really tired out from everything, so this afternoon I had a good long nap and tonight I will go to sleep early.
Addendum:  the oncologist says the general guideline is if my son is not well enough to be at daycare, he's not well enough to hang out with me.

dilemma

Today, my son woke up with a runny nose. In day to day life with a young child who attends daycare on a regular basis, not all that concerning.  This is normal. However, as a person receiving treatment for cancer and knows, despite the "good drugs" that counter side effects, including increasing my white blood cells to normal levels despite the anticipated 30% drop caused by the chemotherapy drugs, I need to do everything I can do to prevent infection.  I know there is the option to send my son to the grandparents, but I don't want to. I know that he gets the most comfort from me and he is most comfortable with being home.  If it he becomes ill enough to be away from daycare, I suppose that is when I send him to the grandparents.  Thank God for family who live nearby and are fantastic supports.

just about life

I have been feeling I have not written in my blog in awhile.  I started writing about perspective/attitude but I don't feel that entry is ready to be published; however, I do want to post something. I thought about this: what has been getting in my way to writing recently?  Well, life.  I have been going out and enjoying life. 
Today I was a terrific workshop with Reid Tracy and Cheryl Richardson (http://www.cherylrichardson.com/schedule/) on writing.  I have been writing since I was a small child.  My folks have poems I wrote in grade 1.  I have been journaling on and off throughout life. Writing is something I have always done. And, recently with this sense that I should be writing more (encouraged by others who have been encouraging me to share)  and sharing my experiences and what knowledge I have from them.  The writer's workshop seemed like a natural thing to attend. And, well, after attending a full day workshop, making dinner, picking up my son, taking time to play in our backyard, doing our routine bath, and story time; I am exhausted.
Yet this is typical of me. Yesterday I was at the Look Good, Feel Better program  (https://www.lgfb.ca/). Wednesday I had help to clean up my house and I did some organizing and sorting too ans spend time with my husband's family. Tuesday I realized there were more pieces of stuff to do (pay bills, complete the census, calls to make, grocery shopping). Monday I enjoyed the company of a colleague who shares my love of the arts and my larger family had dinner together. I think I decided to share some of my day to day activites because this is a reflection of what keeps me going.  I have been really engaged in what I love to do.  This also includes an expressive arts class that I have been participating in too. I think all these self-care activites and social activities with loved ones increase my energy despite chemotherapy.  I still need to be careful not to get carried away and extend myself too much.  But I figure I must be doing something right as everyone keeps telling me I look great; often people are surprised I am in the middle of chemotherapy.  That said, I know everyone is different, and this is just my experience in how to keep my energy up and keep feeling well.
Time for bed after a very full day.
Good night.

Being Your Best Advocate

I am finding that being my best advocate keeps coming up with my experiences within the health care system as well as to engage the supporting resources.  There is a lot out there to support me, but getting the services to coordinate or to provide the resources that I could best benefit by has been somewhat difficult.  And, keep in mind,  I have experience working with “systems” as a social worker and through advocating for my clients.  I am left wondering what others do if they are not in positions as myself: i.e. being fairly alert, mobile, not bogged down too much by the side effects of treatment, and having the wherewithal  to access these systems and be persistent.  Probably persistence is the most important aspect; persistence without expressing frustration, but gratitude for the services provided.

Let me share some of the places where I have been advocating. I somehow suspect this is not uncommon for anyone encountering the health system in Canada and trying to coordinate the myriad of supports.  Recently I received a notice from Employment Insurance (EI) that my payments would stop (it has reached 8 weeks) but I know I am entitled to 15 with proper medical documentation. I know I provided the proper medical documentation already; and I managed to have this copied and stamped as received when it was submitted to my EI office. So upon receiving this information meant another trek to the EI office with my stamped medical certificate in hand. I meet with the worker who informs me that their system does not like to have more than one medical certificate and this is why my claim looked like it was to be ending.  However with this sort of medical treatment,  I could only have more than one certificate. 

Back when I was initially diagnosed I thought this would be an issue and I was wondering how to avoid all this.  I went to my GP just before my surgery – who did not even know about my diagnosis from the high risk centre that I was using.  So my GP could not provide a medical certificate.  I then went to my surgeon, who after some time of holding the paperwork completed a medical certificate based on the surgery but not my ensuing treatments. That certificate took me to the end of March, but I did not meet with my medical oncologist (who would be able to write a certificate on the prescribed chemotherapy treatment) until a few days after my surgeon said I’d be “recovered” from surgery. So this facilitated a trip back to my GP to get an intermediate certificate until I could get one from my oncologist.  When I met my oncologist, he quickly completed the needed longer term certificate so I could then submit a third piece of documentation to EI. This is what I needed to do to ensure that I had documentation showing I was entitled to 15 weeks of sick leave for EI. Fortunately I had a great worker who “sweet talked” the appropriate person to quickly approve the most recent medical certificate.

This is just one example of what kind of run around seems to be typical to achieve anything that would help me within the system.  I did a similar run around for putting my son’s daycare subsidy into special needs and to reduce the amount that I am paying (which is actually still in process).  Part of the daycare subsidy is to know my expected annual income, which in turn meant I needed to get an estimate from my long term disability which I had not yet been approved for and had not yet a case manager assigned (although given the circumstances, they could assure me that I was likely to be approved). I’m sure one can imagine the rigmarole that emerged out of this situation.

What I keep wondering about is how folks who are not as privileged as myself, those who don’t have Long Term Disability, those who are not as well educated or whose have English as a second language. I wonder how they fair under similar circumstances.  I understand that after 15 weeks Ei, there is only welfare as the option for those who don’t have any other forms of coverage.  I know it takes about 6 months to obtain Special Disability in place of welfare, and likely that needs to be seen as a long-term disability. How does that work for someone doing chemotherapy, radiation and likely to survive the cancer diagnosis. That is certainly not enough to survive on.  Does that put people in places where they are losing their homes while attending their health?  I hear constantly from the medical professionals the importance of reducing stress.  How does this reduce stress and how does promote better health for our communities?  Just wonderin’.

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.