Coming to the end of the week, the weather outside is bleak.  So I am taking advantage of the autumn mood and going through some recent communications.  below is an interesting link to an important message about the relationship between chemicals and cancer.

I hope this finds you well.

Given the enormous reach of your blog platform, I wanted to share this with you and hopefully your readers as well. Are you already familiar with the connection between chemicals and cancer? Studies are regularly being conducted that demonstrate an environmental linkage to cancer, and that rates have increased alongside the use of synthetic chemicals. The Breast Cancer Fund annual completes a report on the matter: Victories

Do you know that over 80,000 chemicals on the market today that are included in products have never been adequately safety tested? Science has been showing for years that exposure to these chemicals are linked to major illnesses including cancer. And last year the President’s Cancer Panel finally decided that exposure to toxic chemicals is an important and under-recognized risk factor for cancer, and recommended that the government take immediate action to reverse this trend.

The Panel advised Congress to reform the Toxic Substances Control Act, commenting that this law is “the most egregious example of ineffective regulation of chemical contaminants” and noting that weaknesses in the law have constrained the U.S. Environmental Protection Agency from being able to properly regulate known and suspected carcinogens.” It has also been found that the increase in childhood cancer parallels the proliferation of toxic chemicals.

So why does this matter? I work with Environmental Defense Fund and over 300 health and environment organizations that are working to get Congress to do just what the President’s Cancer Panel advised, that is to overhaul our flawed policy for chemicals – and make chemical companies ensure their products are safe BEFORE putting them on the market.

I’d love to see if there’s a way for us to share this information with your readers whether it’s by syndicating one of our blog posts on here: What do detergents and fragrances have to do with breast cancer? – Not a Guinea Pig – Environmental Defense Fund, or providing you with information that someone there might be interested in pulling from, or writing something specifically for your website.

Thank you in advance for considering. Look forward to hearing your thoughts.

Rachel Pappas sent me a note about her informational website: 1 Up On Cancer.  It is an excellent resource on a number of different cancers.  I especially appreciated her section on “Freebies and Discounts for Cancer Patients”.  I sent the link to our BMT social worker.

Trish DeFosse, a student at Endicott College in Massachusetts, wrote to me about her new, one entry so far,  blog Cancer.  Her first post is reprinted below.

My Father’s Battle With Cancer

My dad was the kind of person who hated going to the doctor’s office, or any other check-up for that matter, and he was extremely stubborn, so it was nearly impossible to get him to do anything that he did not want to do. My dad took care of himself, but in his own way and on his own time. Little did he know, however, that for the last two years of his life he would spend the majority of his time in one the places that he hated the most- the hospital.
During my freshmen year of high school I remember my father complaining about a tooth ache for months, but when we suggested that he go to the dentist to get it looked at, of course he refused. My sister, Danielle, and I finally got him to go, but we were completely unprepared for what the dentist was about to tell us. The painful tooth ache that my dad had been complaining about was actually oral cancer caused from smoking cigarettes.
My sophomore and junior year of high school consisted of many trips to Massachusetts Eye and Ear Infirmary in Boston, as well as the local hospital in my hometown, called Central Maine Medical Center (CMMC). At Mass. Eye and Ear, my father underwent surgery to remove the cancer from his mouth and to reconstruct his jaw using bone from his leg. He was cancer free for a few months, which is when he visited CMMC for radiation and chemotherapy. Unfortunately, the cancer came back, now in his lungs, and began spreading throughout his entire body. On February 13, 2009, four days after my mother’s birthday and two days after mine, my dad passed away. He fought long and hard for his life, and for that I am so thankful and proud. My dad is, and will forever be my hero.
I cannot even begin to imagine the pain that my dad went through, but I know that he is in a better place right now, watching over me and protecting me to this day. Experiencing my dad’s battle with him, along with the rest of my family, has really opened my eyes and made me realize how precious life really is. Many people do not realize this and take many aspects of life for granted until they are faced with their own death or the death of a loved one. Everyone should life live to the absolute fullest, because life truly is too short to be anything but happy.

This entry has to come under the “Shameless Plugs” category.  It is an email from Andrea, a double cancer survivor, whose post “Fear of Death” was reprinted here on Monday, the 26th.  It is always gratifying to know that our little website can have some impact in this complicated world.

It’s me, Andrea (see above post), I’m back to thank you for everything that you’ve done for me, for taking the time to read my blog, for deciding to feature it on your site, for giving me the oportunity to have a voice.
English is not my first language and writing that blog is difficult, and I’m in pain, I’m fighting my tumours and I’m sick, and it’s not easy. By sharing my experiences my only hope is that I might, one day, be able to help a worried woman, someone, somewhere, even in the smallest way.
I’m so grateful for what you’ve done for me, Dennis, thank you!
In only 2 hours I had over 140 views! This is the gift that your site and your reputation has given me, the joy of sharing, the feeling of being useful and the voice to educate and inform.
Thank you, Dennis
Very grateful, forever.
Andrea

Finding content for this blog has been easy lately.  Survivors just send stuff to me.  That is great because my new job working as a nurse in a bone marrow transplant unit at a large university health care system continues to drain my energies while at the same time inspiring me to more.  That should make a a nice post of my own.  Maybe later this week…

Today I received an email from Jen Luce.  She became an ovarian cancer survivor at the age of 29 in 2007.  She has been busy ever since.  She not only maintains her blog 2011: Don’t be afraid to jump , but also finds time to speak at conferences and write for other websites.  She says this about blogging.  “Cancer can be so very tragic, and it takes love, patience and support to get through it. Community became very important to me as I learned to heal myself from the effects of treatment. Picking up tools such as meditation, resources, meditation, and peer counseling, gave me the drive to share with others.”

How do you open your heart and get vulnerable?

I know that love and tenderness have been big topics for me this year, whether it’s been regarding a relationship I’m in which I am personally struggling with due to my past, or what I have felt is an imperative need in my life, or how much I allow myself to be open with others considering the hurt and pain I’ve encountered in dealing with cancer patients.

It’s interesting how much our past experiences denote our responses to current situations.

With regards to vulnerability, the breadth of relationships I have experienced with cancer patients and the wisdom gleaned have allowed me to really open up my heart, though it has been difficult to lose so many from this dreadful disease.

In fact, I must pay tribute to all those lost. This past week we have lost Caio, a 23 year old Osteo-Sarcoma cancer victim. I hate to say the word, but it’s really true. I know he lived with his cancer because of all the support he had, but I don’t think it’s right to live with a disease. I think it’s so unfair to cause so much pain to an angel, as he truly was one. He met everyone with such honour and appreciation of being, that it was impossible to not meet him with love. The memorial service that was held this past Friday was completely full. There was barely room for people to stand. His partner loved him dearly, and really showed this at the service. It was so touching. Several people shared their experiences, songs, poems and flowers, which allowed such a breadth of ceremony.

I’ve had a tough time dealing with his passing. Survivor guilt was never something I thought was possible, until I passed my one year cancer free mark. A survivor mentioned it to me as I’d never heard of it before. It’s a strange concept really; as happy as I am to be here, I’m so angry for those that lose their fight to this horrible disease.

There have honestly been too many to count during my journey post-cancer. I believe there is a post where I was detailing who and when people were leaving this dimension for another hopefully pain-free and peaceful one. I actually feel somewhat disgusted that I was chronicling people I’d met that I’d no longer be able to have relationships with.

I can’t be angry at myself for doing this though, it’s a human response to put things into context and that was my purpose at that time. It is no longer.

~ 2011: Don’t be afraid to jump.

This may well be the longest I have been away from my blog – 26 days!  When I started my new job working as a nurse in the Bone Marrow Transplant Clinic, I did not know to what extent it might affect my blogging activity.  Now I have a better idea although things should improve.  I am working three ten hour days a week during orientation.  There are many things I need to learn: new drugs, new equipment, relearning old skills, remembering many of the facts and procedures I have forgotten, new computer software systems, operations and systems specific to the IU Health in general and the BMT Clinic specifically.

These things can only be learned on day shift since I will be working solo when I switch to my evening hours.  The pace has been a physical, mental, and emotional strain.  I am going from being “disabled” to working ten hours shifts, spending most of the time on my feet.  I am used to getting 9-10 hours of sleep and getting up around nine in the morning.  Now I am at work by 7:30.  And because of the parking situation – 22,000 university students and staff competing with 10,000 health system employees – I have to park a ways from the hospital, leaving home early to take a shuttle from the outlying parking lot.

Of course, this was all complicated by being in the hospital for five days.  We just received the $30,000 bill yesterday.  My body always takes a while to recover.  But I felt like a needed to get back to my orientation quickly.  So I probably pushed myself.  I received extra doses of corticosteroids during hospitalization.  I was discharged with transient hypertension which persisted for three days.  Over the first two weeks I had several more periods of high blood pressure while at work.  My hands started trembling, my heart seemed to flutter and I felt lightheaded.  I went to my doctor, for the second time since discharge, and got started on a “beta blocker” to straighten out the pressure problem.  Only now my pressure was getting too low and I began to feel faint.  So we are still fine-tuning the dose.

Eleven hours makes for a long day.  I get home around 7, retire to the recliner, remote in hand.  I try to arrange my schedule so that I only work every other day – Monday, Wednesday, and Fridays.  I usually feel wasted each day following a work day.  Hopefully I will get strong and build my endurance.

One is tempted to think that returning to nursing would be like riding a bicycle – everything would just come back somehow.  I have discovered that returning to nursing is more like riding a unicycle while juggling six balls, balancing a spinning plate on your nose, and knowing how the repair the bike when things go wrong.  Working as a nurse automatically means multi-tasking.  People on disability don’t do a lot of multi-tasking.

So here I am, back at the keyboard.  I have Father’s Day in front of me.  It’s too rainy to work in the garden.  I plan to publish this post.  Then I want to troll the cancer blogging community for more examples of excellent writing about our collective cancer experience.  I go to my evening shift in two weeks.  Then I will have more time and hopefully more energy to devote to the network.

Take care, Dennis

New Writing Awards Badge

My second antibiotic is starting to kick in against my latest upper respiratory infection.  So I have crawled out of bed.  It’s about time to work on one of my New Year’s Resolutions: creating an award badge to recognize some of the outstanding work of cancer survivors who blog about the experience.  Last year I created the Honor Roll for Excellence in Cancer Writing. (You can navigate to the Honor Roll page from the site map at left or menu above, under “Community”)

My greatest revelation in starting a “blogroll” for Being Cancer was the quality of writing that I found week after week.  I started printing examples of this writing as our Guest Post feature, one of the most popular and widely read features on our site.  For the most part these are not professional writers.  They are just folks who started blogs and were somehow able to connect deeply with what they were experiencing as cancer survivors.  They were then able to convey the depth of that experience in elegant, moving prose.  Excellent, compelling writing has always been my sole criteria for selection.

Working over the holidays with my son from Boston who knows HTML code far better than I,  we managed to create a Writing Award Badge.  It features the Being Cancer Network lighthouse logo against a royal blue background.  From now on bloggers who are placed on the Honor Roll will be allowed to display this award on their own website.  I plan to spend the next few days sending out award pages to past recipients. I will also be working on updating the Honor Roll listings.

Be patient, try to enjoy the snow, and start having a great New Year.  Take care, Dennis