Shifting Awareness

It has been awhile since I have posted anything.  I think this is because I have been working away at trying to figure out how I want to return to life post-treatment, what I want to create in my life for my life. I realize there are many things I want to shift in some way or change.  In part, this is a lifestyle change, but this is also related to how I perceive my health and wanting to ensure that any changes I make are going to create something better for myself and my son.

One of the changes I'm planning is this blog.  The focus for so long has been on my journey of widowhood and cancer treatment.  I plan to shift the focus to be reflective about what enriches my life and what brings me joy.  I hope that what I may share can be a source of inspiration for readers.

To start this new approach, I'll share on of my favourite quotes by buddhist monk Thich Nhat Hahn from his book No Death, No Fear:



"After one in- and out-breath we  have already become a different person."

On survivorship

While walking this morning I realized I actually have too many thoughts on which I want to write about.  I think this is because I set aside less time to write and I have been engaging life more.  I look at this as good.  The main theme of my many thoughts is around holding the space of survivorship, or recovery post cancer treatment.

When I was first diagnosed, I had a wise person say to me, "You are just taking a walk beside cancer for a short while, don't let it take over your life." This is so true.  I know in the depths of treatment last summer I felt like all my decisions and ways of being were influenced by my health issues.  As the lengthy treatment became less demanding I started focusing on more of what I want.  Now that treatment is basically done (except Tamoxifen which I am to be on for 5 years) I am really trying to re-engage life.  I am starting to part ways with cancer, but the disengagement is slow.  I think this is what survivorship is.  The struggle between re-engaging life and disengaging the "walk with cancer" as cancer (treatment) tends to have such a strong presence.

Somehow, I thought, despite seeing several family members' struggles with cancer treatment, that after I finished the bulk of treatment I would somehow be at a better energy level by now.  I thought that I could just jump right into my old life somehow, but it doesn't work that way.  Somehow while walking with cancer I ended up on a different path.  Not entirely different from before, but the path changed.  I look at how I spend my time differently, I look at my health differently, I want to shift the work I do to use the knowledges I have gained in the past few years to help others.  These are changes for sure.  I hope they are better changes that will create an even more enriching and balanced life.

The other thing about survivorship is that I look "great" according to people around me and "you would never know that you are a cancer survivor".   Somehow this lends itself to thinking that it is time to get right back to where one left off prior to diagnosis.  But it's not that easy.  Take this past fun and enjoyable weekend. There was a pool birthday party; time with my folks; taking in Buskerfest; learning to make home-made gnocchi with my mom-in-law; meals with friends and family, so I didn't even cook, I just drove my son and myself around to the various outings. I know I slept solidly each night; and many friends would say anyone would be tired after so much activity. But honestly, I know I am exhausted today and likely going to sleep for a good portion of today.  It's a tricky balance.  I want to live life fully and offer a lot of variety and richness to my son's life; and then there is what I notice I can handle... and likely the responsibility of work, as I know the return will come soon, is really going to challenge the balance I want.

I suspect many cancer survivors feel this way.  I know in early summer, of the other women I met through the Rethink Breast Cancer group, three of the women went back to work early for various reasons.  I know all three reported they should have taken their time to go back and not rush into things.  I am trying to heed this advice and not worry about the return to work, nor overthink things.  I know there are changes I want to make as I re-engage in life and I think about my work life quite a bit.  However I know I should not rush things.  This is again, one of the challenges of survivorship, how to pace oneself and give yourself permission to take your time. Just because I envisioned myself having better energy and being more fully back into the activities I immerse myself in, does not mean I need to be there.  More importantly I am trying to be in the moment: not to overthink the future nor dwell in the past. 

Poem

I thought I would share a poem I wrote about a week or so ago.

Crossing the Finish Line

The super sticky
white
steristrips
are looking dog-earred
and grey
day by day
one falling off here
another there.

The last reminants
of the year long
cancer treatments
that ravaged
my body
and wearied
my brain.

Avenging the reckless
little tumor that
decided to try
and make a home
in my left breast.

In addition to the poem, I'll share what happened a few days ago when I did take the last of the steristrips off.  I took them off at night before bed.  The next morning my son came into my room and that was the first thing he notice: "Momma, you don't have any band-aids!  Momma, that means we can tussle" (play fight). I affirmed, this is true.  Then my son said, "Momma, we need to celebrate.  We need to make chocolate pancakes." So we did.

On appearances

Today I was reading a blog entry, ‘Looking Good’ by Sam Albert (http://ultra-sounds.org/author/skipthewheatgrass/). She writes about how people are always telling her how good she looks, as if there is an expectation that she may look worse, being ill.

This made me reflect on a recent interaction I had with a colleague whom I meet occasionally.   This time, she said, you know you are really looking good, if someone came to our table and we said one of us had cancer they wouldn’t know which one.  I questioned this and she added that I don’t have the dark circles under my eyes or the hollow look around my eyes any more.  I would say, I actually do have dark circles under my eyes still, but not as defined as before. Furthermore, this colleague on previous occasions has told me I look great, which I’m pretty sure was not the case; or perhaps the expectation, as Sam Albert surmised, is that someone whom is “battling" cancer would look worse.

This makes me think that either my supports are either trying to bring me up and make me feel better by telling a “little white lie” or they have really grave perceptions and are amazed by how well I fared through treatment.  Really, what does a cancer patient look like?  Certainly I see at the hospital and other places really ill and frail looking patients who have likely been battling for awhile and/or the cancer has progressed far enough to seriously impinge on bodily functions.  I saw this with my husband.  But even in his case, he really didn’t look gravely ill until the last 4-5 months of his life.  Short of the hair loss from certain chemotherapies and the weight loss side effects (both which are not givens in cancer treatments but common to cancer treatments), often cancer is an unseen illness for many patients, much like mental illness or chronic fatigue syndrome.  Many patients “pass” as healthy without any health concerns if one looks at outer appearances.  In the chemotherapy waiting area, it is interesting to look at the people and sometime the only thing giving away the patient is the hospital wristband.

Sharing of yourself

Today is another day for gratitude and appreciation for stories.

I, again, met someone who was widowed at a young age. I see this as something remarkable.  In some ways before I was widowed, I don’t really recalling meeting young people who were widowed on a somewhat regular basis.  Perhaps I just didn’t note the people’s circumstances, but truly, even of clients, as a social worker, I recall only meeting a small handful of people who describe their life story as having been widowed at a young age.  Yet, nonetheless, I’ve been meeting widowed people all over the place it seems.  Just in the past month I met two older women who were widowed young. I listened to what they revealed about themselves with great interest.  Both had a multitude of children (one had 9 when she was widowed, the other 6). One had had a number of partners since and the other I’m not quite sure, both now have grandchildren and even great grandchildren. One was met at a cancer related workshop.  What both have given me is perspective. At times I feel I struggle with one child to raise on my own, how about nine? Of course there are unique aspects to each.  With multiple children you have older kids who can help with the younger kids and the older children have much to share about their father with the younger kids. But that is also 10 mouths to feed and a home to keep large enough for ten. Anyway, the most important thing is perspective.

One thing I have become even more aware of, and it seems silly to write this as a therapist, is how all of us have a story.  What seems clear to me is that few of us share our stories. Even fewer share publicly, although, that may be changing with this world of internet.  Again and again I have been meeting people whom I have the greatest admiration for given the challenges of their story.  I think, perhaps, these stories of tragedy and triumph are actually quite common, but for some reason no one lets on this is the pain they carry with them and of the strengths that carried them through tough times.  I think if we are more able to share our lived experiences in various ways (in creative, not overbearing or in needy, ways) that perhaps, it is gift that we are sharing with others:  to inspire, to help them through tough times, to help each other understand that we are not alone. In a way, it is an act of love to take the opportunity to give the gift of sharing of yourself.

Happy Valentine’s Day!

It's the most wonderful time of the year

“It’s the most wonderful time of the year” goes the popular Christmas pop song. I actually really like Christmas.  Perhaps it is the good reason to bake and indulge with special foods. Of course the gatherings with friends and family are enjoyed, but I am aware this can cause a lot of stress: to make those now expected cookies, to buy the perfect gift, to create time to fit in everyone. So much of this is socially constructed and idealized.   And, in my head there is often the desire to choose the perfect gift (as a result I gain delight and gratitude of the recipient), sit by the perfectly decorated tree, to create the perfect Christmas get-togethers and meals. I realize this is not only for Christmas.  I’ve been feeding the ideal of perfectionism in my life for a long time.  Somewhere, probably when I was quite young, I assumed I would meet someone who I could love, marry, have a child and live happily ever after (or live a “normal” life where there are no major tragedies).

There is this sense of entitlement, rightly or wrongly, that my life should be content. Even after experiencing so much in so few years, I have often half-heartly joked I should now be free of any further misfortunate – like a get out of jail free card for the rest of my  (hopefully) many years. But is this realistic?  Would I be living and appreciating life in the way I do now if I did not experience hardship?  Or perhaps what appears as misfortune has actually provided me with something I needed and I wouldn’t have otherwise.  If I imagine a life where my husband did not die and I did not have a breast cancer diagnosis, I suppose I would have been engaged in family life and work and little else.  With my husband’s death, I turned to art and started exploring art which provided a much needed salve on my emotional pain. With my own cancer diagnosis, I have had more space to process my husband’s death, I’ve explored writing and art further, I have been more available for my son.  All of these are benefits beyond the obvious losses.
I suppose this is my argument against believing I need to create perfection - which I continue to wean myself off. Even through things appear negative, that perhaps they are good.  Perhaps I wouldn’t know such joy if I didn’t know such despair.  Perhaps all is perfect just the way it is.

Kindness

It seems kindness has highlighted my past few days.

On Friday I watched the documentary Finding Kindness. This is a movie exploring the “mean girl” phenomena.  The beginning of the movie says something along the lines of a woman can "stab" with a look, she doesn't need a knife. I think all women know exactly what this look is. The Finding Kindness movie is examining how most, if not all females have experienced some sort of bullying, emotional abuse, “in/out” behaviour  (gossip, rumours) or some sort of emotional daggers by other females at some point. Further, Finding Kindness suggests rather than trying to deconstruct the complex web that reinforces this mistreatment of each other, that we could all make change by embracing being kind.  More about this may be found at www.kindcampaign.com

Really, kindness and promoting kindness is not just for shifting girls’ behaviour, kindness can shift one’s inner world. If we all strive for kindness there can be changes in our outer world. Today I went to a Buddhist temple with a few other friends for meditation and prayers for world peace. The nun leading the proceedings spoke on kindness and how kindness is relational and the basis of the qualities of love, compassion and joy.

When I reflect on how kindness has played in my life, I think kindness has helped me survive in these complicated times in my life.  Kindness of others has provided the support throughout these tough times. Kindness to myself has allowed me to have ease and relinquish the perfectionism that guided the (perhaps misguided) vision for my life prior to all the chaos; kindness has deepen love in my life; kindness and understanding has extinguished fires that created tensions in relationships.  I’m sure I could create a longer list, but I think my point is clear, that kindness has been part of the underpinning of my survival.  Finding kindness in everyday activities to be grateful about and being mindful of creating my own acts of kindness daily makes all the difference.

My wish is that each of us can find kindness each day.

All in the Timing

The past couple of weeks have been a whirlwind of activity. With Halloween, I spent a large number of hours making a dragon costume for my son.  It looked great and I think he had a lot of fun, and now has lots of candy in his trick-or-treat pumpkin.  There have been a lot of social activities and a spattering of medical/paramedical appointments. Pacing my days seems to be a challenge.  I think I have planned/managed my time, but then again, I find I have over extended myself.

I decided to visit a friend out of town, deliberately planning to drive in the mornings as I have more energy then and could rest with my son during his afternoon nap time (thankfully he still naps). I didn’t realize how tired I would feel after the few days away.  I found that after I was exhausted for days.  Ultimately I have figured out at this point in time I can’t really handle more than one appointment, event or activity per day, and I still need a two hour nap.

I’ve been looking at my energy like a glass of water.  Every day that I have a decent night’s rest I start with a full glass. Sometimes I don’t start with a full glass because my son has woken up in the middle of the night or I have a busy brain and have not settled down to sleep as well as I could. Each activity uses some of the water in the glass until it is almost empty and then my nap is a refill.  This analogy has been used with as a candy jar on the Livestrong/Oncolink Care Plan website. Even though I have started to do a little jog or exercise, this does not re-energize me as before, it takes a certain amount of energy and has to be weighed carefully as every other activity.  Over-extending myself may initially result in an abundance of fun and enjoyment of activities and outings I love to do, but then I need to set aside time the following days to recoup afterwards.

This is the most obvious change since treatment.  It is strange, but really the treatments have changed my body in many ways.  And, I don’t know if it will be permanent or passing.  Recently I noticed I bruise, cut easily, my veins are more difficult to access with needles, in general, my body’s been delicate since treatments. This creates a whole new level of needing to be cautious.  I may feel I can just go back to activities the way I would prior to the cancer treatments, but I am finding this s not so.  There are the obvious results of cancer treatment (the hair loss including lashes and brows – now growing in quite well), the side-effects from treatments and so forth, but there seems to be a whole layer of subtle changes that doctors don’t really share (especially before one embarks on these intense treatments) that can exist months, possible years or permanently after treatment. Like my finger tips and toes remain numb and that should clear up within the year, but may not. Then there are the drugs that probably cause infertility, which many younger woman arrange to have eggs harvested and frozen so they can try from pregnancy later, even though pregnancy later in life is a risk factor to breast cancer.

What all this musing leads to is again, relating to being present in the moment.  Can I live fully in the moment not comparing to what I was able to do prior to treatment?  Can I build myself up to be even healthier, with stress better managed, being in the moment.  Truly, as Thich Nhat Hahn writes ”with every in breath and every out breath we each are different.” In a moment, our world can be different, sometime greatly: for example with my husband’s last breath, my, and my family’s worlds were changed dramatically; or minimally: with the breath I breathe in this moment, I am digesting my breakfast and something changes within my body, although, perhaps undetectable by me. I hope in being in the moment, I can stop looking at what was, or how my body was, and start being what I need today.

Even the brilliant make mistakes

Today I found out a mistake that my hubby made.  It was something that I was ready to defend for yesterday.  I wanted to get my car ready for winter and tune it up. My mechanic found was the battery needing replacement; however he did not have the battery that was needed (and this is likely a blessing in disguise now). So, my dad and I went off to Canadian Tire to get a replacement and return the old battery as there is a rebate for returning the old battery for disposal. When we get there, the battery we’re told that fits in my car (my late husband’s car) is actually different than the one we just had taken out.  I thought, for sure they must be wrong.  My husband was fastidious and his car was his “baby” there is no way that he made a mistake in replacing the last battery. Canadian Tire staff insisted that their computer is correct and this is the battery.  I purchase the battery and returned to my mechanic who says this battery is too small, it is the wrong one. He makes calls to confirm what part number for the battery he thinks we need. My dad and I return to Canadian Tire to find they will not do refunds on batteries and if we purchase the one that my mechanic suggested the warranty will be void because it is supposed to be for another model of car. Needless to say I was exasperated with the back and forth; and, given I was supposed to be at my in-laws at this time, I suggested to call it a day.

This morning I decided to go to the Nissan dealership to clarify which is the correct battery... and guess what, the listed, smaller battery at Canadian Tire was correct.  Honestly, my husband was very detailed oriented.  I think this is what helped him excel at mathematics.  He would work through any sort of problem methodically, not just math. I just can’t see him putting the wrong battery into his car that he kept meticulously. Yet, here I am at the Nissan parts and service and they verified the battery that I purchased was the correct battery for my car. So, even the brilliant make mistakes (or car batteries have significantly shrunk in the past 5 years).

What does this tell me? If I apply this to the world of cancer (or otherwise), the suggestion to always obtain a second opinion is not a bad idea.  Even if your doctor seems brilliant, perhaps it is good to check out to see what someone else would say. You never know, may something new will be learned.

Giving Thanks

It is Thanksgiving weekend here in Canada.  I thought it would be a good time to reflect on giving thanks and gratitude. I could write about what I am grateful for and give thanks to all those who surround me and do wonderful things to enlighten my life or in giving acts of kindness that are unexpected.  All of these are truths in my life and very much appreciated.  What I have noticed is the process of giving thanks, and what it can do for me. 

There is something about gratitude that creates space.  I was attending the process of a friend who gave a simple blessing for food prior to eating a quick lunch with me.  I was not “brought up” saying grace, nor has religion played a significant role in my life; however I found that her few words allowed for reflection to be more mindful about the food we were about to share and it seemed to create a greater appreciation for the food. Slowing down to take that moment for a few words rather than jumping into the meal made all the difference. The meal then became a more mindful experience to savour rather than just eating for sustenance.  I can see how taking those little steps to encourage being aware can shift how a simple thing as a meal can be appreciated.

I have found that looking through the lens of gratitude; I can find something to be positive about in the most difficult situations.  It doesn’t negate the pain of a difficult situation; however, it can start shifting how I view the situation, and perhaps make it less stressful.  I notice when I can find gratitude, it creates the space to breathe and I start freeing myself from the negativity that is often pervasive in difficult times. I think gratitude allows a positive “spin” to occur and a shift can start. It can bring light into the dark.

I'm not fighting, I'm living

Another blog, by another breast cancer survivor, that I occasionally read has made the point that one does not fight cancer, rather, one treats cancer and the treatments work (or not) to varying degrees. Further, cancerous cells always exist in our bodies; they are simply our regular cells that have not responded to the natural "die" functions that our body gives. It is our body's natural abilities to stop unnatural cell growth that prevents tumors from developing and us being diagnosed with cancer. Beyond this, if one dies of cancer, it is implied that they didn't give a good enough fight.  Fighting cancer is like saying I am fighting my own body. I tend to think I am attempting to engage my body/soul/self in it's best way of being; no matter what the outcome (although I feel unprepared to check out of life at this point and I know the timing is not my choosing) I am living my life the fullest I can. Rather than hijack someone else's blog, I'd like to share the article that she included in her blog about Jack Layton and cancer from the Globe & Mail by Carly Weeks : http://m.theglobeandmail.com/life/health/new-health/conditions/cancer/jack-layton-didnt-lose-a-fight-he-died-of-cancer/article2137736/?service=mobile

For Love or Fear

I have been wondering about whether to keep this blog anonymous.  There are reasons to share my blog more openly. I am thinking about shifting my therapy work to be more focused on working with cancer patients at their families, if possible.  I would not want to do this full time, for it to encompass that much of my life, but I do feel I have a lot of knowledge and experience to share and give to others. If I do more within the “cancer community”, certainly having a blog of my experiences could be useful.  There is also another potential project I’m starting to become involved in, about sharing my life process/experience in a more open public way, so having my blog attached to my name could be a good idea. My original reasons for keeping the blog anonymous were fear based.  I didn’t know what family would think; I didn’t want my work to know how I was perceiving all of my life; I don’t want the information I present here to be used against me (i.e. future work or otherwise).

Regardless of whether blog anonymity is helpful or a barrier, I am realizing this is another element of letting fear control my life.  I am starting to re-evaluate how I see my life and what I deem important.  I am re-evaluating my decision-making.  It could be as simple as telling myself that my bills “should” or “need” to be paid.  How about owning this more and not feeling like it is a burden? “should” and “need” certainly imply bill paying is a burden.  I want to pay my bills.  Really I do. Besides maintaining a decent credit rating; how else do I keep a home that I love, my car insured, on line services for posting this blog?  I want to have these things or be able to do certain things; then I want to support all aspects of each.

As part of this process, I am questioning my motives for anonymity.  I don’t want to be making decisions out of fear; rather I prefer to make decisions out of love.  Love for others, love of what I am doing, love for myself.  I tend to approach most of my relationships and my work in an open manner; not necessarily revealing all and not having any boundaries, but to allow things to be shared without disguise, or if I don’t feel comfortable revealing; to share that frankly.

As I write this entry tonight, I think I have resolved the anonymity question, for now.  I think I am uncomfortable with being easily judged for my experiences right now, a level of vulnerability that I feel with still actively receiving cancer treatments. However I do think when it feels right I will be writing under my given name.

Radiation & Prayer

Last week I started radiation.  It's seems like nothing in some ways yet I know the side effects are cumulative. Not relishing this may occur as I am still working through ongoing side effects from chemotherapy.  I'm trying to make this experience as positive as possible. Initially I imagined the radiation to include some visible rays of light - which it doesn't. So rather than visualizing in an imaginative way I have found myself reciting a prayer that was given to me to give to my husband when he was ill.  It goes as follows:

Divine light shine in me.

Divine life permeate and (heal) every atom of my being.

I am the resurrection of Life.

Heal is in brackets as I added that word to the original prayer.

Prayer is found in research to be associated with better outcomes in comparison to those who do not engage spiritual practise.  As many who know me, they would say I am not a religious person.  I do not engage in organized religion (as in attending church on a regular basis); however I do believe in a High Power/ the Universe/the Cosmos as having some divine direction that impacts us all and connects us all.

Let us look deeply at a wave in the ocean. It lives its life of a wave, but it lives the life of water at the same time. If the wave were able to turn toward itself and touch its substance, which is water, then it would be able to attain nonfear. The wave does not have to search for water, because water is the very substance of the wave. ~ Thich Nhat Hanh, No Death, No Fear

 

As I journey on this complicated and path of my life (at this point) I continue to hold onto the thought that all will be well in the end and that I am not on this journey without some reason that will develop further growth within. I always have been a firm believer that I experience Life for further development of myself and to share myself with others for our shared growth.  Of course there is a tiny little piece of me that questions my beliefs and rages at my circumstances.  However I hope my beliefs are not for naught; as my life continues to evolve I hope it continues to reinforce my view of the Cosmos.

On Loss

Earlier this week, Canadian politician, Jack Layton died of cancer. Jack, as he is affectionately referred to, made so many contributions to my city as he initially was a city councillor here; he went on to become the leader of the official opposition. As a social worker I have seen and supported many of the changes and causes that Jack advocated for in public policy that created change for communities.  It is a great loss for our communities and country. 

The loss of Jack has touched many deeply, including myself.  I think I feel his passing intensely as in some ways the loss of Jack reminds me of the loss of Al, my husband; the loss of someone who always had something positive to contribute and to share with those around him. As I read my words, I think of the importance of reframing.  I have been focused on loss. What is more important is how much I have gained by these amazing people who have touched my life.  It is a reminder of how to live life fully. It is a reminder that death does not mean the end but the beginning of a legacy that started with living. And through remembering and story-telling, the departed continues to live.

Jack had written a letter to Canadians just hours before he died.  I’d like to share the last paragraph which I believe are words to live by, and describe how I try to live.

 “My friends, love is better than anger.  Hope is better than fear. Optimism is better than despair. So let us be loving, hopeful and optimistic. And we’ll change the world.”

Chemotherapy post script

In the "Real World of Chemotherapy' I had some questions for my oncologist to answer. I stated that if I get a resonable responce I would state it here... and I think I did.

As I understand, Taxotere/Docetaxel that I have been for three rounds works by stopping cell division and provided cells with a death message. This is by the Taxotere interfering with the growth of spindles, thus providing the message there is no more growth to be done and the cell must naturally die.

This does not account for the large amount of swelling that my body goes through and my concerns for inflammation.  My oncolgist explained the swelling and inflamation is more related to the steroid that they put me on the manage the side effects of Taxotere.  When the steriod wears off, my body creates more inflammation to compensate for the change. Fortunately the Taxotere continues giving its die messages for a week, and the inflammation is cleared up by then.  Interesting to learn about. And, I think my oncolgist enjoys having my interest in the process.  Upon parting, he heartly shakes my hand and grins about looking forward to seeing me the next time - now in 12 weeks. I may have to come up with more questions for him.

I think his attitude is good as he has interest in the process of cancer and what the drugs do.  He could be the type oncologist who just listens to side effects, prescribes medication to manage the side effects and send the patient on his/her way.  I would find the second scenario completely frustrating and likely feel that it was taking from my empowerment as a patient to understand what is happening with my body. I've been blessed with doctors who are a good match for me.

on personal growth and becoming an advocate

I understand for many who meet me in my adult life, they are surprised to discover that I was a very shy child.  I was so shy that I only spoke to others when spoke to first, the exception was with close family and friends who I had known for a long time. In reflection, I often found it odd that I choose a profession where I talk for a living, however I tend to reveal little about myself and my clients are paying me to reveal much about themselves in a very sacred manner. Somehow, leaving my childhood home in my late teens and living independently freed up my voice; albeit daunting.  Today I carry this on further to find myself advocating for myself in my own healthcare. 

This week I had the opportunity to connect and chat with one of my colleagues became ill with breast cancer around the same time as myself.  She has different issues than myself, however, I started asking her questions about her treatment and she could not name the chemotherapy drugs she had took and had little interest in knowing the details of her treatment.  I found this surprising for a woman who often is outspoken and likes to "rock the boat" a little.  It became clearer to me I am seen as a different kind of patient. I tend to spending first meetings with my doctors asking a barrage of questions related to my treatment and they have kindly responded and typically have spent 1.5 to 2 hours with me upon a first meeting. This has allowed me to have open frank conversations with my medical team which works for me, because I would rather know what exactly I am dealing with and make informed choices.

As an aside, I recognize this is likely influenced by the joint experience of my husband's disease. He was diagnosed with cancer of the ampula vatar, the treatment prescribed was treatment for cancer of the pancreas.  We questioned this difference with several doctors throughout his treatment.  We were simply told this is the treatment.  Eventually, after being released from the last clinical trial that he could participate in, we asked his trial doctor again, what is the difference? Her response was a tentative 'well it is different on a cellular level'.  Well cancer is a cellular disease and each type of cancer is different; what happens to the cells (rapidly reproducing and not dying off like normal cells do) is the commonality.  I wish one of the doctors told us this in the beginning. We did logic it out, but we wanted a professional to confirm what we already knew. Perhaps, we may have explored alternative treatments earlier. We may not have pursued this route, and the outcome may not have changed at all, but we were denied that opportunity by not being clear about how the treatment the doctors were offering was just the best the could offer in their knowledge because the cancer he had was so rare.

Back to what kind of patient I am, I've been peering into my patient file at the hospital, which really has nothing really of interest or anything that I didn't already know. By the way I was not sneaking into filing cabinets, my doctors and nurses leave my file out in the open, so it is free for review. In my file, a social worker I had contact with described me as actively informed and engaged in strong self-advocacy.  I think I need to start revisiting my self-definitions as I'm realizing that young shy child is no more, she has owned her voice and has become out-spoken in a way.  I still am introverted and reserved in many ways but I have learned to be comfortable with my ideas and the validity of my thoughts.

Back to the supports, I've actually found that despite many additional psycho-social support services for breast cancer patients exist (in part because breast cancer has large amounts of funding), I've implemented most of what they offer already in my day to day life practices. Not always consistently, however that is more about my own lack persistence and /or regiment.  What I have benefitted from is many of the services of RETHINK Breast Cancer: http://rethinkbreastcancer.com/, especially their 'Angel Nanny' and Child Life Specialist programs. I am still interested in finding an internet chat space for patients like me, preferably geared to young breast cancer survivors like myself.

Recently, I have found is many people I have personal contact with are curious about what I am doing, especially around diet. I will share this in my next blog entry. I consulted one day with the hospital dietician the nausea side effect was starting to interrupt enjoyment of many foods and I was starting to worry about what could I even manage to eat without alienating my taste buds from all food. As I tend to read literature that is provided to me, there was very little she shared that was new, if anything.  She did confirm what I already knew, but I guess I was hoping there was something  more that can be done.  I think this is the limitation of modern medical services, and somehow I keep thinking there is a "magical solution" for the challenging aspects of treatment. There isn't, I think it goes back to attitude and creating perceptions within my thinking that allows for me to feel I am making positive change for the betterment of my health and my son, who I know has a challenging genetic legacy with strong histories of cancer on both sides of the family.

I am also investigating ways to make my home more toxin-free, slowly using up store bought cleaners already in my cupboards.  As I use them up I am implementing natural products, mostly home-made cleaners, however for serious laundry stains, I think I need to start experimenting with store bought products. Also, I am starting to look into toiletries which apparently have many ingredients that impact hormone regulation and I am starting to explore how I may start phasing out these items from my home too. So far, these changes are informed by information in and There is Lead in my Lipstick (http://www.gilldeacon.ca/projects-lipstick.php) and  The Ecoholic Home (http://www.ecoholic.ca/homebook.html).

The Benefits of Cancer

This may seem like an odd title, however there have been many benefits of being diagnosed with cancer.  Probably, the more accurate way of naming this is the importance of attitude and perspective.  I know everyone says it is important to have a good attitude, and that will make all the difference with my health and how I manage treatment.  I chose at the beginning of my journey to state to friends and family that if you are not going to be positive around me, then you are not on my team.  I maintain this by clearly letting people know that if they are not positive,(and I’m not talking Polly-Annaish, rose colour glasses positive here, but not being all doom and gloom and pointing out the hardship of the situation) they are not on my team. I believe how I chose to think about this disease and its impact on my life makes all the difference in having a good attitude.

I’ll share some examples of how cancer has benefitted me. The obvious piece, from my perspective, is that when I returned to work after my husband passed, I knew I was not ready to be working with people’s emotions as a therapist when I was struggling to work with my own on a daily basis.  However, I was clearly told that it was unlikely to obtain disability for grief issues, if I were diagnosed with depression that would be fine, but I was not depressed, just still very actively grieving. After working six months it was clear to me I needed to reduce my work hours to manage better; this request was turned down and other arrangements I tried to make were not working out.  So in some ways, the cancer that occurred in my body has allowed me to gain the time I felt I needed.  Obviously this is not the way I wanted to gain more time for myself to sort myself out, but in a weird way it is working for me.

Other ways this diagnosis is benefitting me is the shock and desire to control something with my health issues has lead to me making even healthier choices in food and I am feeling really motivated to engage in more exercise (albeit I am not able to do much right now during treatment due to side effects).  I know I will engage more exercise once the  heavy part of my treatment is completed because I started this prior to my surgery, and I was doing things that I really didn’t think I would be able to physically tolerate.  Knowing I have already achieved certain physical things is great for feeling that I will be able to engage these activities – and perhaps more – after the intense treatment that I am currently engaged in. I also think the cancer diagnosis and treatment occurring now has encouraged me to set up an improved lifestyle from before that will benefit my son, who genetically, doesn’t have the best legacy.  If I can instil these ultra healthy habits now, he will have a good basis to live by and to may not be setting these genetic predispositions off.