preparing to meet the medical oncologist

Today I meet the medical oncologist who will be working with me.  He is the one who is going to be determining the drug treatments I recieve.  I have found in the past couple of weeks I have had anxiety about this.  I think initially I thought having Stage 1, estrogen based tumor would be simply the surgery, a prescription of tamoxifen and radiation treatment.  However I know that my case is not that simple.  I am young.  I carry at least a genetic predisposition to developing breast cancer.  There were two small tumors that were removed with surgery. The tumors were found to be very fast growing.  So this may result in chemotherapy being recommended.
Call it vanity, but I am fearful of losing my hair. It is actually not vanity so much as I feel that if people notice I have a wig (or there is some sort of wig malfunction) that immediately this puts me into the catagory of recognizing I am a cancer patient.  I struggle with this.  Here I am writing a blog about being affected by cancer, yet I have really just shared my heatlh status with family, collegues that I work with day to day and close friends.  In fact, I have let most people know either through word of mouth or I let them know by e-mail.  Only a close few were told directly.  Why? I can't stand the reaction.  The horror on people's faces, in their voices, to learn this has happened to me after what I just have "come out of" with my husband's ordeal and death from cancer. I am working so hard to not be seen as patient and to not let cancer infiltrate every living breathing aspect of my life. I cannot let myself become that identified with cancer.
Back to the drugs. I am concerned about what all these drugs may do to my body, both in the short term and especially the long term.  Many of these drugs are seen as something to kill the cancer, (the microcells that may remain in the body) but they cause a myriad of other deficencies.  The long term impact is usually not fully known.  Even radiation is unclear what the 30+ to 40+ year impact is... patients were not often diagnosed young and the usually don't survive quite that long. Now, with technology and medical advances, they do.
These are my thoughts prior to meeting the medical oncologist.What else have I done to prepare for this meeting?  I did my walk and meditation time by the lake (although someone was sitting in my usual spot which could be a whole other blog entry). Picked up some organic blueberries and made a lunch of white bean dip (sans oil) made with a generous helping of tumeric & black pepper (known for its anti-inflammatory properties and seen as a integral part of an anti cancer diet), sauted red chard (with garlic & chicken broth - a great substitute for oil) and rye crisps. I have a book for notes with every doctor, nurse, medical professional I have contact with.  I named it my "book of love and healing" as I want to have all my care and treatments to be done with love and to focus on healing. In my book I have about 20 questions to ask the medical oncologist.  I found the Dr. Suan Love website http://www.dslrf.org/  along with the cancer profiler found on the site helpful in creating the questions and being informed about what process is to be expected.
So wish me luck.

on meditating

I have been trying to meditate.  Now this comes with its challenges living with a lively almost three year old who rarely stays still to do anything.  I have tried at night, but often I am too tired and just fall asleep.  When it my son is not at home, then it is completely do-able; but the days he is home, it is rare; likewise to engage physical activity beyond chasing him.  This said, there are many benefits to the meditations I have been attempting.

I have some background to meditation, as I stated a practice almost 10 years ago.  As I wrote that I wondered, really, has it been that long?  That may explain how I found it easy to “meditate” through my birth three years ago. However, since my son has graced my life, my meditation practice has virtually disappeared.  With my diagnosis, there has been great impetus to reinstate my meditation practice.

When I first started meditating years ago, I recall just trying to sit and concentrate on my breathing.  This really did not work. A friend suggested counting each in and out breath, and once I became distracted I would start at one again.  It would typically be something like this: one in, two out, there’s the sound of my neighbour; one in, two out, I hear the clock ticking; one in, two out, What else do I need to buy at the grocery? One in, two out... you get the picture.  At some point I recall on good days I could get up to around 15. Soon after, I was able to focus on my breath.

I understand that some people experience the counting as a competition to see how high they can get, especially if taught in a group setting.  I’ve also tried letting the thought go as a technique. So, if I am trying to focus on my breath, and I have a thought, I simple name the thought: planning, fantasy, worry, distraction, whatever it may be and acknowledge it exists and let it go. For example, say to myself this (name the type of thought), it is time to meditate. If is it persistent, to acknowledge the thought and let yourself know you will give it attention after the meditation time.

As I proceeded with meditation, I started to incorporate states of being I wanted to achieve for the day.  As a therapist, I often wanted for be able to be focused, attentive, patient, or compassionate for my clients and I would incorporate that into my meditation.   So I would use these words, like a mantra, to my meditation.  For example, today I am breathing in patience, and think patience within each in breathe.  Sometimes, especially after a difficult day, I would use this technique to breathe in peace and relaxation and to breathe out tension and stress. In the past weeks I have been breathing in health and healing and breathing out disease and emotional pain (more on that in another blog).

Also I have been practising meditation at the lakefront nearby my home.  I will drop my son to daycare, go for a long walk that will take me to the lake.  I have found a space on some large rocks where I like to sit. Here I will focus on the lake, nature, the birds or whatever is nearby.  I find to breathe with the movement of the waves very helpful.  At times I feel as if I am becoming the waves and am at one with the waves.  I think this practise has become one of my favourites and likely one of the more beneficial ways of meditating for me.

Another experiment in mediation I have tried is writing my own guide meditation.  I sat with myself and decided what sort of things I want for me right now.  This became a guided meditation for me:

Breathe in... Healthy green vitality

Breathe out.... The dregs and heaviness that weighs me down

Breathe in....Enliving lightness

Breathe out...The heaviness that weighs me down

Breathe in....Healthy green vitality

Breathe out...The dark heaviness that weighs me down

Breathe in... Healthy green vitality that energizes me

Breathe out....The dark heaviness that weighs me down

Feel the lightness....Feel the free

Feel the release of the heaviness

Exhale

Breathe in the lightness of green vitality

Breathe out the dark heaviness

Breathe in light freeing energizing vitality

Breathe out the dark heaviness weighing me down

Breathe in light, energizing vitality

Be Free.

I have also come across a few healing guided meditations.  I like the ones in the appendix for Love Medicine and Miracles by Bernie Siegel.  I think to have them recorded in your own voice can be a powerful tool as I have found that working with my inner self I am doing what I need and hearing me for myself.  There is something about that process than having another person guide me.  It is way more effective to actually take the time to record the guided meditation rather than read it and try and recite it internally in your head as you go.  I think this has to do with where my focus is and being more present in my body.



bureacracy/being your own advocate

I understand that many people who have health issues often run into bureaucracy.  I have been working through this in the past week.  It is amazing how non-fluid the system is; and how much process of being "medicalized" requires one to just "drop everything" in order to meet the needs of the system in order to obtain "good" healthcare.  I don't know how applicable this is in other countries, but certainly I understand this is widespread in Canada.

So, knowing something about cancer treatment and how the experts work together, I decided to contact my GP prior to my surgery in hopes of streamlining the supports I anticipated needing.  At that point, my GP did not even know about my diagnosis (despite being over 1 month since the biopsy and two weeks since I was informed of my diagnosis), so since she was not the "attending physician" nor did she have any record of the diagnosis, I was sent back to my surgeon to fill out forms.

After holding the forms for many weeks - great surgeon, and perhaps that is good that she does not put much (if any) emphasis on paperwork - the papers she filled all said that I would be able to return to work shortly.  Yes, in terms of the physical limitations of the surgery, but I think I may have other treatments to complete.  Of course, the date given by my surgeon is prior to the date I meet with the next specialist, a medical oncologist. Today I went back to my GP, who kindly filled out all the forms (again) and wrote an additional note so that I could have continuity in my financial and other supports for the next couple of months. I think I will proceed by heaving each doctor, to continue to fill out forms just to ensure there is a paper trail showing that I continue to receive treatment.

What this comes down to for me, is that I need to be my own best advocate and case manager.  There is no one keeping track of how all these treatments and doctors are coordinated, nor is there a nice way of streamlining all the information.  I have decided to copy every form I have filled out and make copies of all information I receive. I also need to be more detail orients. Today I proceeded to submit the forms my GP filled out and one of them has a technical error, so now I need to return to my GP to have the form done again.

The other piece of bureaucracy is the last minute prior to meeting with the next specialist calls. The assistant/nurse is calling asking for me to do preliminary imaging etc.; scheduled in last couple of days prior to what I'm perceiving as a more important meeting - meeting the medical oncologist where I will receive the remainder of the pathology results, learn about what drug/chemo treatments he is recommending.  I agree the imaging ordered is a good idea for baseline and ensuring there is no other signs of disease. They ask can you be here or there in the next couple of days and for from ideal times (try 8:15 am and 9:00 pm) for a single parent of a young child.  It is annoying and leads to needing to either ensure I can gain support from my network for additional childcare as with travel time this doesn't really fit my daycare's hours or  I negotiate with the nurse to try and obtain a more manageable time for imaging which I know is likely booked fully.

God forbid if I decided to continue working as then I'd have to be constantly renegotiating my work schedule to accommodate the various appointments that are needed; or negotiating with the nurses. Which, I will say is always an option and they do try to be accommodating.

With this "rant" for the frustration of the system, also comes gratitude.

Thank my lucky stars for having such amazing people around me who have been there every step of the way. My parents and in-laws have been invaluable as providing childcare on the "drop of a hat", often rearranging their own schedule to be there for me.  If I didn't have these kinds of supports, I would likely be well engaged in using some sort of nanny or childcare on call service, which easily runs $60 per 4 hour minimum of childcare service.  Yes I have researched that as I wanted to ensure I knew my options if I am in a pinch. There are so many additional costs to receiving/creating good health care despite being in a country that provides "universal health care." At the same time, I am grateful that I am not in the United States, if I did not have the insurance, or suitable coverage, I image I could be completely bankrupt and homeless at this point. 

Juicing/smoothies

I have started to like smoothies (a blender drink, for those who don't know this term) more since my journey started.  When Al was ill we were juicing - carrots, beets, oranges.  When I was first diagnosed I started with concoctions like beet apple ginger.  Actually my son really likes them.  And when fruit is added it makes the taste easier to manage if one is not used to drinking straight vegetable juice.

Recently a friend with a zeal for healthy diets and juicing made us a smoothie, in her super-duper blender/juicer that needs headphones to protect the ears while running.  This had all sorts of things in it: dates and  nut butter to help with the flavour, spinach, banana, berries etc. So I have taken inspiration from her. Today's blender smoothie was the last of my organic raspberries, organic baby spinach, alfalfa sprouts, whole almonds, a couple of dates, wheat germ and some soya milk.  Believe it or not, it was pretty good, as long as you’re not turned off by the greenish hue and grainy texture to the drink.  It is definitely easier than cooking a healthy lunch from scratch as I’m feeling pretty low-key today.

The information I have read suggests there are nutrients that are useful in an anticancer diet that are lost when the vegetable is cooked.  The other advantage is that I can ingest a whole lot of “good stuff” all at once.  It seems to me there can be more I can pack into a smoothie over a quick lunch option... of course I could have made what I put into my smoothie today as a salad with a glass of soya milk on the side. I also like the smoothie over juicing because all the fibre remains in the drink and I gain the benefit of the fibre.  I’m sure there is fibre in the juice, but there is always some leftover pulp.  Although juicing cannot be beat for hard vegetables.

Chrysalis/Metamorphosis

I've been thinking about how I chose the title of this blog.  The most obvious is that I am looking at this stage of my life as metamorphosis.  In a way, forced metamorphosis, not that I haven’t always been working on further improving on myself through exercise, diet, inner work; but the diagnosis really pushed any aspects of life outside of my holistic health completely aside.  The day I found out, I became mobilized immediately.

My first decision was if the friends and family around me are not positive when around me, then they are not on my team.  I made appointments to ensure all my allied health professionals (naturopath, therapist etc.) were engaged in considering how I can best augment whatever treatment I would need to go through. I started to eat an “anti-cancer diet”.  For me, that means all meat products and by-products must be organic along with the fruits and vegetables that carry a high pesticide load.  I stopped drinking coffee, alcohol, eating any processed sugar, white flour and eliminated any fats except flax, olive & canola. I started boosting the amount of vegetables and fruits I eat.  I have some awareness reseach shows brussel sprouts, kale, blueberries, turmeric, flax oil and flax seed being seen as having high anti-oxidant/anti-cancer properties. I have found Anticancer A New Way of Life by David Servan-Schreiber very helpful and reflective of the approach I have been taking.  I have also been using some of the recipes in Cooking with Foods that Fight Cancer by Richard Béliveau and Denis Gingros and The Spectrum by Dean Ornish.

I started attending hot (Bikram) yoga – something I`ve been eyeing for awhile to try out but didn`t until now. I attended a meditation group and have been trying to meditate every day.  I started looking at emotions that were still present within myself and working to be more at peace with my past.  Part of that work has been meditative, part dialogue with my higher self, part creating of rituals of release, and part putting some of this into art (written and visual).

I found, prior to my surgery, I was feeling fantastic.  I was juicing and eating superbly well (and Little Guy is being a good sport and eating many of the new vegetarian based dinners I am creating - more on those recipes in a future entry). I could tell that my body was naturally detoxing and I was starting to drop a few pounds (in a healthy way not in a rash quick way).

So metamorphosis, it is hard to put in words.  I suspect the changes I`m making now to my exercise habits and diet are going to be permanent.  I may not keep as strict a diet, but I`m pretty sure the organics and less meat consumption will stay. Today, I`m sharing some of the process of metamorphosis in recent two paintings.

Hopefully by the end of all of this I will sustain the beauty of a butterfly, inside and out.

My Story

This story is only part of my story; however it has been a set of life altering experiences that will likely shape the rest of my life to come.

Where to start?  I’ll start with before life became something of a medical soap opera. About five years ago I married the most wonderful man, Al.  I was working full time in my established career as a social worker and he was searching for how to establish himself in a career.  Al had completed a PhD in Mathematics that took most of his life.  He has one published paper based on his PhD work.  Al and I knew we were perfectly suited to each other: both similar in ways and complimentary with a shared vision of us.  We knew our families were quite different, but somehow we were quite the same.

Close to a year in a half into our marriage we became pregnant.  I remember Al picking me up and swinging me about when the home pregnancy test showed positive.  We were elated.  Three weeks after this event, our lives became changed forever.  Al started to become sick, jaundice.  He sought helped from his GP.  There was the thought of hepatitis, as we were travelling about a month before.  All the tests came back negative. Referrals were made and imaging done.  Al had a growth on his pancreas. The good news was the location was operable. Al had surgery (sort of the equivalent of open heart surgery for the digestive system) on December 17. The next day I had my three month ultrasound, with the first clear images of our baby. Al did great in his recover and came “home” the earliest day possible, Christmas Day. Home at this point became my mother and father-in-law’s home.  Al and I agreed if we needed help concerning his health, we would go to his parents, if it was concerning my health or the baby’s, we would go to my parents.

As I write I realize there are many other details/emotions/reflections I could add. However, I want this part of blog to be history, a general reference so that a reader will understand the story and context of my blog.

We spent two months at his parents, who at this point I’ll mention are very traditional Italian and speak limited English (and I have limited Italian). Then we returned to our home, focusing on our coming bundle of joy and the rest of Al’s treatment (chemotherapy and radiotherapy).  At this point we knew that the growth on Al’s pancreas was an angiocarcinoma with cells originating from his ampula vatar.  The treatment advised as the same as for pancreatic cancer. I don’t think there was anything outstanding in our perceptions at this point.  I recall in May we had some concerns with fevers, Al was investigating an anti-cancer diet.  Really we were starting from a blank slate of knowledge about cancer.

In June I gave birth to our beautiful son, who I’ll call Little Guy. Despite a quick and easy birth, I had complications, retained placenta.  That lead to me being hospitalized for 5 days and give a blood transfusion and us staying with my parents for almost two months for my recovery.  During our stay, Al had a follow up appointment with his oncologist; he found out the cancer had metastasized to his liver. This was devastating.  And, Al, just being who he was, did not want his family to know.  I believe he did not want them to worry or cause undue stress.

When we returned home, Al was finishing the new chemo. Al appeared healthy looking but it was found that chemotherapy did not help and he was referred to the palliative team, which we initially resisted. We started to look for alternative therapies and clinical trials.  At some point we shared Al’s health status with his brother and sister.  My brother in law started to voraciously scour the internet for information and alternate treatments, beyond what we had tried/started.  At some point we moved back into my in-law’s home due to Al’s failing health, despite Al not telling his folks his then considered terminal status.  By the time Al passed (9 months later, the doctors told him he has 3-6 months max) we had tried a wide array of therapies (private clinics/clinical trials/ naturopathic/alternative energy therapies/foreign doctors) all the way to a chemo treatment that occurred one week before his death. I will mention here there was a great deal of conflict in the months prior to and after Al’s death as I had different ideas and interpretations as to what was done or would be reasonable than other family members.

When Al passed, I could not imagine being by myself with Little Guy, so I moved in with my parents.  During this time I mostly took care of my son and grieved.  Fortunately my folks, in laws and brother were amazingly present to help care for Little Guy while I tried to sort out my life. I sold our condo, bought a little house that was a short drive from each of the grandparents, negotiated a return to work (which was daunting, being a therapist and holding so much emotional turmoil within myself), and started a course in Expressive Arts Therapy – which has been a life saver in many ways.

So here I am, widowed, less than forty, with a small child. Living on my own, back working for over a year and I finally feel I have a handle on “a bumpy patch in life”, as my dad terms it, when I get more bumpiness on the road of life.  I have been part of a high risk screening for breast cancer as my mom and both of her sisters have had breast cancer.  Guess what, they found something.  I just had my surgery 4 weeks ago and recently found out most of the pathology (no serious worries as it is Stage 1).

Why start a blog now?

Well, I found out my diagnosis from the biopsy, I dove in using every bit of knowledge I had from Al’s experiences.  And I have been incorporating this with what my heart/soul tells me I need to do for my own healing.  I know this is useful to people, because unlike many cancer patients, I have a whole host of knowledge to care for my treatment.  I recall when Al and I started on our journey with his cancer, we just took whatever the doctors told us at face value and didn’t really understand the complexity of this disease, despite both of us having family history of cancer.  I am understanding from my experience that there are so many factors that contribute to my health and well-being and this blog is to share what I am learning in my journey to be at optimal health.

Deciding to Write a Blog

So, I’ve decided to write a blog.  I wasn’t sure how I wanted to proceed, but there has been this strong desire to share and to start writing about my experiences.  Through the format of a blog, perhaps what I share can be inspiring and/or informative to others.

This blog is based on my experiences with cancer and with healing.  Perhaps it comes from a unique perspective in that I am a clinical social worker (therapist/counsellor) who has worked with issues of trauma for over 10 years.  It mostly comes from my set of experiences which I am coming to realize have much value in sharing, besides having much feedback from others that I have something to share with the greater world. 

One of the challenges to writing this blog, besides the feeling of vulnerability that accompanies putting oneself into the public domain, what I share is very personal in nature, and there are many friends, family and colleagues involved in this story. So for those who know me, as I believe my story is recognizable as it is definitely not the run of the mill set of life experiences, I hope you don't mind me blogging about it.  I plan to keep relative anonymity for those involved.