Always more to learn

Today I started attending a group run by Rethink Breast cancer (www.rethinkbreastcancer.com).  I thought it would be good to have a place to meet other women/mothers who are in a similar situation.  After the first session, definitely good.  I'll be looking forward to it and my son, I think, enjoyed the children's group.
As gathering with any group of people there can be new things learned. One thing, in this group of women, there seemed to be the startling prevalence of breast cancer development while nursing; and subsequent misdiagnosis because of nursing, thus putting these particular women at further risk becasue their tumors were growing quite large at alarming rates prior to being properly diagnosed.  I know this was not the whole group's experience, and perhaps this group of women is not representative of younger women with breast cancer (although I suspect it is), but it was a theme that occurred a few times and seemed to sit with me.  Again I feel lucky that I have doctors who listened to me and were active in referring me to the high risk screening program. Again, I think that it is so important to listen to you body and be a strong advocate for yourself.

I also heard many stories that reflected my experience of treatment and the feelings of isolation as typically one's friends are not going through cancer treatment with you and although fully supportive and empathetic, it can be hard to feel others truly understand at times.  One of the neat things out of today's group was finding out about a website that is a platform for organizing volunteers, www.lotsahelpinghands.com. This site is designed to enter the e-mails for your support community and to list the tasks that you need support with.  I sure wished I knew of this site when I was first diagnosed as I had many offers to help and it would have been a way to organize them rather than just calling people ad hoc or relying on accepting whatever was being offered in the moment.

Writing of this great support through Rethink and of the new site I learned of today, reminds me of another great support, ART for Cancer Foundation, which is hosting two watercolour workshops in the next couple of weeks.  If you are in the Toronto area and interested, check out http://artforcancerfoundation.org/programs/
By the way, for people following my blog, the art exhibit through ART for Cancer Foundation went well. Here's my art on display:

The written blurb included with the art is as follows:

Somehow I came to the most unexpected, rough patch on the bumpy road of life. As a clinical social worker I thought myself fairly well resourced, but even the well resourced need to have their outlets.  Painting became mine.

My paintings reflect different points in my healing journey. I started to engage visual art during studio time while taking an Expressive Art Therapy training.  The smaller painting, Dead or Alive (oil on canvas, 8” x 10”), is my first visual art piece I created that emerged out of a movement based class that ignited an alternative reality experience that I knew I needed to paint.  At this point, I had only been writing as a means to address the loss of my husband to cancer six months before.

By springtime, about a year after my husband’s death, I was painting more abstract. I found myself playing with colours and movement on canvas, often painting in the little windows of time in my busy, hectic life.  The larger painting I call Gestation (acrylic on canvas, 24” x 30”) was created around the time I first felt some interest in actively engaging in life again.

Just under two years after my husband’s passing, I was diagnosed with breast cancer. I spent time trying to release anything that could be a blockage or a detriment to my health.  In a guided meditation focused on release, I had a strong visual image of the painting that became Firewoman.  I believe this was a point of emotional and spiritual transformation which I have continued to develop as I proceed through the rigours of treatment.

When I started painting, I found that I could not stop.  Even as a single parent of a small child, I felt I needed to carve out time to have this mode of self-expression. Painting became a means of expressing what could not be expressed by words: an elixir to release the complicated emotions inside and a salve to the pain I was carrying within.

I thought I would share.  If you are interested in seeing more of my artwork, please check out my website, www.abelcreation.com

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).

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’.

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.