Saying Nothing at All

I've always tried to live by the wisdom that if you have nothing good to say, then say nothing at all. Well I stillll have nothing good to say, but today I'm going to say it anyway.  I am cranky, tired, miserable, bitchy, and at this point just plain being dragged through each day.

Thank you to everyone who keeps checking in, and putting up with me giving you either a snarky reply or not answering you at all.  Just saying.  It's not you, it's me.  I told you I planned to sleep away February, so thank you, I am, and I don't really want to talk about it.

General concensus by my medical and family folks is, that I am feeling this way due to the plain-jane thyroid hormone replacement medication I am taking until my radioactive iodine therapy in March, I get bumped up double the hormone pills on March 25, so I am anxiously awaiting that time more than a month away.  My body is still adjusting to the changes it suffered from thyroidectomy in December as well, that is a fact.  

Low hormone, the fact that it is February (and other than sunshiney-vacationing-folks, who fares well in February anyway??), side effects from my pacman treatment, and general depression and malaise side-effects that two kinds of cancer give you while you put all your effort into looking after your kids and trying to recuperate without going insane.  Grrrrr  

Took myself to have bloodwork done yesterday (you can do that when you are an oncology patient who habitually feels like shit and you have an open requisition at the Lab) so that when I see my family doc tomorrow we can study the data and see if there is any relief we can bring me outside of having me committed to a rubber room (or having me mailed to my Mother in Florida as Scott suggested).

A huge portion of my cranky disposition is that it has been three weeks since my last head to toe CT scan at Sunnybrook, and I am still anxiously awaiting results.  

Realistically speaking, I have every right to be anxious about the results of these reports, as I have yet to have one that is clear of any "issue" we need to investigate further. Last time we waited and left a "discovery" in July until "surgery" in December, it ended up being "a lot more invasive" than it may have been had we perhaps "hurried the fuck up!"

My last one in October showed something in spine for which they recommend a bone scan.  My main oncologist suggested we wait til after we resolve the thyroid stuff as I had a lot going on in Nov/December, so I am fully expecting more information on that.  HOWEVER, the first of my CT scan results appeared on my online chart finally this morning, and I don't like the looks of it.  

It's my head/neck radiology report, and it says I have several enlarged lymph nodes in the posterior nasopharynx something... and "Short-term followup is recommended to rule out retropharyngeal adenopathy." Being as we removed 37 lymph nodes from my neck I was going on the assumption there wasn't much else to have issues with so I am rather distressed at this.... feel free to google that if you want, I will not.

I have called and emailed both my surgeon and the oncologist who always "interprets" for me, and I hope to get further information ASAP.  :-(  

And this is even before the other two reports come in, for thorax/chest and the abdomen, which are the ones I was worried about in the first place.  It's the liver and leg we are supposed to be watching.  Aaarghh  See why I should just keep sleeping??

Anyway, thank you yes, I am taking vitamins, drinking water and green tea, enjoying Valentine's gifts and cards, trying to not stress, resting, being gentle with myself, reading novels, playing computer games, getting lots of hugs, and hanging in there.    Can't go around it, gotta go through it. 

Canadian article: Yervoy® (ipilimumab)

 

Save Your Skin Foundation Supports INESSS’ Evaluation of Yervoy® (ipilimumab) as a First Line Treatment of Metastatic Melanoma, and Hopes Quebec Government Allows Access to Patients Soon.

Article:

MONTRÉAL (Wednesday, February 4, 2015)- February 4th marks World Cancer Day and in Quebec, a treatment for metastatic melanoma has been denied. Save Your Skin Foundation Supports the recent Institut national d’excellence en santé et en services sociaux (INESSS) evaluation of Yervoy® (ipilimumab) as a first line treatment of Metastatic Melanoma, and hopes the Quebec Government will approve patient access soon.

Currently melanoma patients have limited options for first line treatments, making equal and timely access critical to patients who are dealing with life and death scenarios. INESSS’s analysis aligns with clinical evidence, and with the requests of the melanoma community in Quebec, including the Save Your Skin Foundation, to recognize the importance of immunotherapy for advanced stages of melanoma and to increase survival rates associated with its use. We hope that this evaluation will encourage hospitals to provide clinical access to patients with a real necessity for Yervoy® despite the refusal due to economic costs through the processus de nécessité particulière ensuring that patients will still be able to receive treatment, as indicated in the INESSS report.

“We are disappointed Yervoy® didn’t receive Government approval as a first line treatment for melanoma, however it’s positive that the current government is exploring how to work with the rest of Canada on how to unlock the access problem in Quebec”, says Kathleen Barnard, President and Founder of the Save Your Skin Foundation. “Once again, Quebec is denying access to important oncology treatments that are available in other provinces. Delays in receiving treatment can have significant impact on cancer survival in Quebec. “

The Save Your Skin Foundation strongly supports the Quebec Government’s initiative to work in collaboration with the Pan-Canadian Purchasing Alliance (PCPA). “The minister’s decision reaffirms the need for communication between the government and drug manufacturers and the necessity for Québec to join PCPA,” explains Barnard, further expanding by saying “We have seen this process be effective and positive across the country. In the meantime, Quebec patients are dying from melanoma even though safe and successful treatment is available in Canada.”

Many patients in Quebec are living proof that immuno-therapies are increasing their chances of survival, especially in cases of metastatic malignant melanoma where, historically, a typical life expectancy was six months. If the Government is unable to find a solution, Quebecers will not have the same chance of surviving advanced cancers as their Canadian counterparts. “As a patient, and in order to have hope for my future and for others diagnosed with melanoma, I believe that a treatment such as Yervoy® must be used as a first line treatment. Efforts need to be put in the right place, life doesn’t have a price,” says Pierre Bousquet, a melanoma survivor from Québec who received Yervoy® through special access.

According to the World Health Organization one in every three cancers diagnosed is skin cancer and nearly 2-3 million people will be diagnosed with skin cancers worldwide. In Québec alone 40,000 new cases of non-melanoma skin cancers and 1,000 melanomas will be diagnosed, with 100 people dying of Advanced Malignant Metastatic Melanoma.

Yervoy® was recently approved by pCODR as a first line treatment for melanoma.

About Melanoma

In its late stages, the average life expectancy for melanoma is just six months, with a one-year survival rate of only 25 percent, making metastatic melanoma one of the most aggressive forms of cancer and one of the deadliest forms of skin cancer. An estimated 6,500 Canadians out of which 1000 will be from Quebec will be diagnosed with melanoma this year and 1,050 will die from it (100 from Québec). Melanoma is responsible for 70 percent of deaths associated with skin cancer.

About the Save Your Skin Foundation

The Save Your Skin Foundation is a Canadian not-for-profit foundation. Through events and other initiatives, the Foundation focuses on raising funds for education and awareness, providing emotional and financial support to those dealing with melanoma and non-melanoma skin cancers, and on supporting the ongoing research and treatment of skin cancer — especially melanoma.

For more information, visit www.saveyourskin.ca

Glad I am not in Quebec, another article re: Pacmen

Two major milestones for ground-breaking melanoma immunotherapies bring a hopeful beginning for 2015
Jan 6, 2015

Yervoy moves another step towards being available for newly diagnosed Canadian patients and new treatment Opdivo receives FDA approval

Article:

VANCOUVER (January 6, 2015) – 2015 is starting with good news and hope for melanoma patients thanks to two major milestones for ground-breaking melanoma immunotherapies. The Save Your Skin Foundation (SYSF) is very pleased to learn that a new treatment, Opdivo (nivolumab), has been given its first approval in the United States to treat advanced melanoma in patients who have not responded to other treatments. At the same time, the original melanoma immunotherapy, Yervoy (ipilimumab), has moved along another step in the process of becoming available as a first treatment for newly diagnosed Canadian patients.

Health Canada approved Yervoy for first line use earlier this year. The pan-Canadian Oncology Drug Review (pCODR), has now issued a positive recommendation for provinces to pay for Yervoy for newly diagnosed advanced melanoma patients. Until now, patients have had to try and fail on older treatments before governments would pay for Yervoy.

“Being able to try an immunotherapy such as Yervoy right after diagnosis is a big step forward for patients,” added Kathy Barnard. “The earlier patients can try the new therapies, the greater the chances that they will be strong enough for the treatment to be effective. We hope provinces will now move quickly to accept the pCODR recommendation to make Yervoy available for newly diagnosed advanced melanoma patients. Every melanoma patient should have an equal chance to survive.”

The latest treatment, Opdivo, like Yervoy, is also an immunotherapy, meaning it works by stimulating the body’s own immune system to fight and kill cancer cells. However, Opdivo stimulates the immune system in a different way than Yervoy. This is what makes it so promising for those patients who won’t respond to Yervoy or other immunotherapies or when those treatments no longer work. SYSF is very hopeful that the FDA approval means that Opdivo will soon be approved in Canada.

“This is wonderful news for people with advanced melanoma and their families because it offers additional hope in dealing with this disease. Just years ago, patients were surviving on average six months. Today the word survivorship is a reality; it’s truly amazing.” said Kathy Barnard, Save Your Skin Foundation President and Founder and an 11-year survivor of melanoma thanks to participating in a clinical trial for Yervoy. “Melanoma treatment has evolved so dramatically over the past few years. The new treatments literally are giving melanoma patients a chance to live and survive. I know because I’m living proof of it.”

About Melanoma in Canada
Every year, thousands of Canadians are diagnosed with melanoma, with the incidence of the disease increasing faster than that of any other cancer. Melanoma is a deadly form of skin cancer characterized by the uncontrolled growth of pigment-producing cells (melanocytes) located in the skin. One in 74 men and 1 in 90 women are expected to develop melanoma during their lifetime. Melanoma is clearly visible on the skin, and 90 per cent of melanomas are caused by exposure to UV light, including tanning beds.

About the Save Your Skin Foundation
The Save Your Skin Foundation is a Canadian not-for-profit foundation. Through events and other initiatives, the Foundation focuses on: raising funds for education and awareness, providing emotional and financial support to those dealing with melanoma and non-melanoma skin cancers, and on supporting the ongoing research and treatment of skin cancer – especially melanoma. 

For more information, please visit www.saveyourskin.ca

Week 27, Statistics

Just been sorting receipts and running the numbers in preparation for 2014 tax return, specifically adding up medical costs associated with hospital visits, surgeries, treatments, hotel stays, drug costs outside of my employer benefits plan, meals, mileage etc.  I'm told this all counts at tax time, so I want to be ready.  

Thought it might be interesting to some, here goes:

• this is week 27 of my 68-week melanoma treatment schedule (week 1 was August 11, 2014)
• this is week 43 since diagnosis in April 2014
• in 2014 I/we made 4 trips to RVH in Barrie, 3 to Toronto East General, 16 to Sunnybrook Health Sciences Centre, and a few to Owen Sound for dermatologist and biopsy appointments, and to Collingwood for first surgery, biopsy, and CT scan, plus all the knocks I have made on my Clarksburg doctor's door
• that totals 7,782 kilometres travelled
• $566 in parking lot fees
• we have discovered 4 new favourite restaurants
• there are 9 doctors involved in my care
• I have 3 wicked scars 
  
• have taken approximately 20 new prescriptions or supplements orally or by IV
• have consumed around 98 000 000 litres of water, tea, and coffee
• have written 6 packs worth of thank you cards, and still not done
• to date I have had 29 visits from a home care nurse
• have had upwards of 150 vials of blood taken
• I have watched "Under the Tuscan Sun" 8,278 times
• it is my 4th CT scan for which I am currently awaiting results.......

Or in my case more like:

Have a Plan

Outside of my commitment to sleeping away February, I have decided to plan a few things to try in my relatively appointment-free time this month, provided I feel up to it.  

I have joined a support group at Gilda's Club in Barrie, and I have joined a writing group with my new social worker, also in Barrie. I have ideas to explore, and I am very motivated to reach out to the resources offered, that I am able to access at this time, and see where they take me.  

Obviously I enjoy hearing myself talk so much I have to write hour-long posts on my blog, LOL and I receive lots of encouragement to keep writing, not only for personal reasons ie. venting and complaining, and to update my friends and family on our news around here, but also with the undercurrent of finally pursuing my lifelong dream to write professionally?  

I have been considering taking a writing class for a while, but I am reluctant to commit to any social activity (as many of you are aware - thank you though, for the invites), and it can be difficult to schedule that kind of me-time between all the other stuff.  Obviously my medical appointments take first priority, but if I feel up to some fun outside-of-the-box stuff then I have found the venue.  

On Friday the girls and I had three appointments and spent the day in Barrie.  In the morning we went to Gilda's Club, where I filled out new member forms for our files; we can now just show up any time we wish, and we can participate in any support groups or activities they have on their calendar.  

Claire hung out in the teen room while I met with the staff, Cassie spread out in the art room again, we got to pet the visiting therapy-dogs (super-cute little cocker spaniels that maul you to death, wowee adorable), and we snacked on valentine cookies while hanging out in the kitchen chatting with people. There was a "Coffee Talk" group there whooping it up. :-)

I also signed up for a support group (there is not exactly commitment required, but if I like the group it could be a long-term thing on Tuesday afternoons).  The group is called "Wellness" and it is a group for those with metastatic cancer.  There are also supports for family and friends, or caretakers and/or whatever the situation may bring to different patients.  I am also interested in the Gentle Yoga class, as I have been wanting to get back into yoga as part of my physical rehabilitation, especially for my right leg which is a puffy(lymphedema) half-numb achy disaster. 

After lunch we went to RVH for two appointments, first one being with my new Social Worker, with whom I had spoken on the phone before.  We met her and had a good chat, as always it is good to get someone else's perspective on how to handle the mental to-do list, cancerous or not.  I have a couple of ideas on how to handle some things that are bothering me, and the girls are also content with seeing her again to help build a good base of support for the long-term.  

Apparently I showed my interest in writing, and the social worker invited me to join a new writing group she is starting next week actually.  It is called the "Legacy" group and it has to do with writing a memoir of sorts. Led by the counsellor, and with weekly homework, it is a five-week group that may just meet my criteria for trying to join a writing class - will keep you posted!

Third appointment of the day was with the radiation oncologist who keeps me up-to-date in the RVH system.  I advised her of all the goings-on since I saw her last July, and she asked me to have Sunnybrook add her into the loop on case notes.  Doctor network-ish?  They can CC their colleagues all over, saves me the half-hour spiel each visit.  My dermatologist asked me the other day too, to have her added to the Sunnybrook send-out.  

I did spy on the computer screen that they had part of my CT scan report from Sunnybrook radiology, but when I asked for a copy they she said sorry nope, better to wait for your team to call you.  She did scan it though and said everything looked okay, but darnit she wouldn't let me see.  Hope to get that report this week?

Other than that is has been pretty low-key weekend around here, I got to have some one-on-one time with Cass as Claire was away babysitting for the night, and now I'm back on the outside as they are glued together recuperating from their rare time apart.  ;-) 

I have cleaned up my paperwork from Friday and have supper in the oven (thanks to my friends' stocking the freezer), now will relax for the evening, content in my feeling like I have a plan. 

“A goal without a plan is just a wish.”
― Antoine de Saint-Exupéry

My assessment of my medical team

In the past year I have gathered quite a collection of concerned medical professionals, they invite me to their workplaces and give me rafts of paper and needle pokes and bruises and they work to keep me alive.  I learn from them, I get scars from them, they make me cry, they make me laugh, they confuse me and they amuse me.  Time for me to give something in return... 

I have mentioned before the "posse" of friends and family that are incredibly supportive to myself and my family, and I have come to recognize the individuals in my posse inadvertently have different roles ie. the Cheerleader, the Researcher, the Curser, the Warden, the Florist, the Chef... My cancer posse is my lifeline. Or my pillow and blankie. 

Rightly adjacent to my cancer posse is my medical team.  I want to share their specialties in the way I see them - maybe it's the chemo-brain perspective or just my imagination running wild - these descriptions are not meant in any malice, and I will not mention their names as I do not intend any slander.  Just sharing one angle of my perspective on all of the medical people that make our health care system go round.  

I'll start with the Endocrinologists - they are the Nerds of the crowd.  Sorry guys, don't get me wrong, I love nerds (have been called one a time or two!!), and we need you brainiacs to sort out whatever mysterious stuff goes on in our endocrine systems.  Who better to be expert on glands and hormonal systems than the nerds, I really don't want them to mess that up! :-)

The Surgeons:  I have had the unique pleasure of experiencing four surgeons to date, and my assessment is that they are the Artists.  They are masters with their hands, they aren't afraid to start something intangible and stick with it until it is done to their satisfaction.  They flit around in their decorative head covers and sometimes even sing during surgery. True story!

The Anesthetists, they are the Invisible Man.  You see their names on your surgery reports, you meet them, and then halfway through your greeting to them zzzzzzzzzzzz they're gone.

The Dermatologist:  She is the Ice Queen.  Flawlessly fair-skinned and floating above her chair, she obliquely addresses my situation with the air of knowing that it is because of people like me she has to shake her head and tisk any time anyone anywhere sees a ray of light from the big bad sun.

The Radiation Oncologist (with whom I meet every six months but have not actually had her treatment):  she is the Goth.  She likes tattoos and to zap people.

The Social Worker: the Heart. The private place where I can indulge my emotions, good or bad... or as the Heart would say: embrace the comfortable and the uncomfortable feelings.  

Nuclear Medicine Physicians:  I have not yet met them but I suspect they will strike me as the Experimenters, they are the children of those fathers who secretly built rocket ships in their basements.  We actually had one of those in the small town where I went to high school... I remember their street, and the eerie glow coming from the end of it. 

The Medical Oncologist:  She is The Boss. The MOB Boss.  She is on top of everything, she's smooth, she's good, she's got my back, she wears leather, she's my very own Tony Soprano.

The Nurses:  they are the Flowers.  They are all over the medical garden, at the reception desks, on the phones, in the hospital rooms, at home, everywhere you want them to be and sometimes where you really don't want them to be, but you appreciate them regardless. There are sunflowers and daisies, aloe vera plants and forget-me-nots, roses, definitely not pansies!  And there are also the likes of stinging nettles and thistles (such as the one who I reported to her supervisor for yelling at my elderly/disoriented/post-op neighbour in the middle of the night. Grrr!), so beware... treat them all with sugar-water and step lightly, they have the ability to make or break the scene. 

The Lab Technicians, obvious: Vampires. 'nuff said. 

The Naturopathic Doctor: the Neglected House Plant.  I want to run to my valuable green friend but I can't find my way to her from this pharmaceutical maze in which I am trapped.

The Radiologists: Sherlock Holmes.  They read black and white pictures of my insides and discover clues to my medical mysteries. It is Professor Plum in the Liver Room with the Poisoned Apple!

Mmm..the Pathologists: oh wow, I haven't yet decided, as I try not to think of them too much, they have only given me bad news to date, well except for the girls' moles, they did redeem themselves a bit on that one.  I imagine they liked to play in mud when they were kids, they are the Mud-Pie Makers.  They dissected dead creatures they found in the dark forest and created haunted doll house fences with their tiny bones.  

The Family Physician, She is the glue that holds it all together: the Saviour.  She makes sure I am sitting down before she gives me bad news, and she picks me up when I fall anyway... she medicates my pain, and soothes my shattered nerves, she answers my questions and thinks of me even when I am not bugging her. She kicks my ass.  She calls me to cheer for the good news.  She is my Interpretor, my liason with the world of oncology, she is my mother, my sister, my guardian, and my Hero.  She is the person I want to be when I grow up. 

Article © Natalie Richardson 2015