getting a little help to ease the way out

Few topics are as controversial as assisted suicide. It's currently illegal in Canada but recently, a Canadian woman with an irreversible debilitating illness travelled to Switzerland, where the group Dignitas provides assistance with suicide, legally.

I think most of us have contemplated our own deaths. When you live with metastatic cancer, it's impossible not to do so. I'm hoping that moment for me is in the distant future, but I find the prospect of a long, lingering death from cancer to be terrifying. However, is it more terrifying than the prospect of death itself?


I differentiate that from euthanasia because I think the term I use clarifies the willing and conscious participation of the person facing death. Am I kidding myself that this is a distinction that can be maintained? 

What would you want to do when the end comes? 

I'm certain that I believe assisted suicide should be legal. I don't know what I would do, if faced with a choice.

A trip down memory lane

Back in 1971-2, half of all cancer patients lived one year. Now, in the UK at least, half of all cancer 'sufferers' (how is that for a horrible term?) live for ten years. I would assume the rates are similar, or even better in the US. But even in digging around in the National Cancer Institute's website, I could find the data.

The actual quote is:

"The analysis showed that in 1971-2, 50% of people diagnosed with cancer died within a year. Now 50% survive for at least a decade - up from 24% in 1971-2.

But the findings, based on the outcomes for more than 7 million patients, also showed that for some cancers, survival rates were still very low.

For example, just 1% of pancreatic cancer patients and 5% of lung cancer patients can expect to survive for 10 years."

So there is good news and bad news mixed together. But it does show a huge improvement in cancer treatment and research.

The goal is to have it increase to 75% survival rate for ten years. Its not just treatment and research but also screening and earlier diagnosis which have come in to play.

So progress is good. It shows we how far we have come. But we also need to work on the vocabulary. Sufferers? Really?

Everything I learned I learned from a blogger

WEGO Day 30…Today, write a recap of your experience.  What was your favorite prompt? Least favorite? What have you learned?
PHEW! Praise the blogger gods!! While I love to blog, on some days this was a challenge.
I am not a great writer and some days I was not in the mood but I did it. OK, so what if I cheated a few times, go ahead and sue me I got 4 kids and a husband. Of course being the OCD person I am a felt that I had to get this done in the morning, plus my days are a bit crazy. I learned so much from other bloggers that I LOVED this. It forced me to read about things I never would have, I made new cyber friends, I read about viewpoints I may not agree with but totally respect. Thank you WEGO for challenging us. While some posts were awesome, I love “Wordless Wednesday” (plus it was less writing LOL) and the APP one there was that damn animal one. I am still cursing out! Who made that one up again, Christine was that you??? But I did it and read the others who were up to this challenge. The one thing this did for sure is it proved what I have been saying all along. Everyone has a story to tell. We can never truly understand what someone is going through because it is their journey; we can empathize but never really get their side. We need to respect each other more because of this; you can’t judge someone because they do not take the same path as you. That is what is great about blogging, it tells YOUR story, read it if you like if not there is another person’s story you will relate too. My story my not be what you agree with but it’s mine and no one can take that from me, some have tried literally to take my story and make it their own, dumb asses. There really can only be one Stupid Dumb Breast Cancer Princess, get your own tiara!

how he moves in the world

My baby turned 8 on Friday. I love him so much.

it's tonight!

Unemployment after chemotherapy

In May 2007, two weeks prior to my breast cancer diagnosis, I was laid off from my full time job. That is the last full time job I have worked. I was a rocket scientist and decided I could job hunt between surgeries and while going through chemo. I ended up returning to a part time job I had held before - lucky me, they had an opening.

Now it turns out I am not alone. New research (because we always need new research) shows that women who undergo chemotherapy for breast cancer are much more likely to become unemployed. (They didn't tell us about that little factoid when we were making treatment decisions.)

"Dr. Reshma Jagsi of the University of Michigan Health System and her colleagues studied 2,290 women in the Los Angeles and Detroit areas diagnosed with breast cancer between 2005 and 2007. They spoke with more than 1,500 of them four years later.

About 1,000 of the women were under 65 and interviewed both times, and of them, 76 percent had paid jobs before they were diagnosed.

The women who got chemo were less likely to still be working four years later, they reported in the journal Cancer. The researchers found that 38 percent of the women who got chemo were jobless four years later, versus 27 percent of the women who skipped chemo..."

"The findings don’t surprise breast cancer experts. “For the vast majority of patients, side effects are manageable and they can improve after, but some patients don’t feel fully functional for the long term,” said Dr. Jennifer Litton, a breast oncologist at MD Anderson Cancer Center in Houston."

In my case, I worked two part time jobs for a total of about 30 hours/week for a few years after chemo and radiation ended. Since my rheumatoid and fibromyalgia diagnoses I have cut back to one part time job for 15-18 hours/week. Sometimes that is even difficult.

Even with out RA and fibromyalgia, I am not sure I would be able to do my previous jobs again. As marketing director for a medium sized non profit, I was multi-tasking, putting out fires, and jumping through hoops as I hands on managed and over saw an on-and offline marketing plan. My brain is fried. I get tired. My chemobrain kicks in and I have no memory of what I did 10 minutes ago. I don't trust myself to do as much as I used to.

Now I do marketing for a small family owned business. When I took the job, we discussed the fact that it was clearly a step back for me career wise. I told them my life had changed in that I had gotten married and was looking for a job where I wasn't traveling, wasn't managing a bunch of people, and could go to work and go home. That has become even more real. 

Now I leave myself notes all over the place on what needs to be done because there is no way I could remember it all. I have flexibility to go to doctor appointments and for the days when I am too tired. I can manage my schedule around my health issues. And I don't have to worry that I might overextend myself because I can handle my little job.

This new research shows me that I am not alone and there are many other women out there who don't work or work in lesser jobs because of chemotherapy.

Go into the light children…..

WEGO DAY 29…We all know Health Activists are awesome. Share three things you love about yourself, things you’re great at, or just want to share. Don’t undercut or signpost!

Funny that this is the post for today when I am in a funk. I have battled the beast of depression for years and sometimes that dark ugly thoughts pop in even during the happiest or best of days. You need to find some light wherever it maybe and sometimes when you are depressed that seems impossible. The fact that I am in an UGH mood about myself and have to write about what I love will be a true challenge and my have some serious sarcastic under tones.
I do love the fact I can fake a good mood. Well, at least to my outer circle the inside people know me all to well. But for the most part I can go about the day very chipper on the outside. Makes you wonder what else I can fake!
If you do not want to know my opinion do not ask. I will tell you how it is whether it is what you want to hear or not. I have lost some people over this but I won’t budge on that. Keep in mind it is just my opinion so if you do not like it do not listen. My filter button was wobbly before then stupid dumb breast cancer broke that button right off. I have often said “Crap did I say that out loud” because I let those thoughts in my head out. Scary place up there.
I have the ability to seek help. I know when I am in a dark and scary place or am feeling overloaded I need to seek professional help. Luckily for me I have a line of therapist to choose from. Time to go lay on the couch and talk it out.
Look the reality is that even a princess has some issues to iron out. It takes some work to keep that tiara shinny. But when it is said and done I do like my faking, broken filter, messed up self! Sometimes I even love her!

Your Cancer, Your Kids. What's a Mom to Say?

One of the first things that come to mind for many women when they're diagnosed with cancer is: how am I going to tell my children?

Martha Aschenbrenner, KNIT (Kids Need Information Too) program manager at MD Anderson Cancer Center in Houston, has a quick formula to help you get a conversation started in your family.  She calls it the Three C's:

• It's called Cancer.
• It's not Catching.
• It's not Caused by anything you did, or did not do.

Ms. Aschenbrenner is familiar with the topic as an educator, as a mother, and as a mother who was diagnosed with cancer when her own child was just four.  "Parents are at a loss when dealing with traumatic illness," she says, "because it completely upsets our normal role as a protector.  But silence is not honesty.  It is a lie of omission."

She has a number of great points -- which I'll list below -- as does CancerCare in this one-page handout.  Helping Children Understand Cancer.  Both underscore what you already know: be as honest as you can. You are already a terrific Mom.  Cancer won't change that.

• Don't be surprised if they ask if you're going to die.  That's normal.  Reassure them that you hope not, and you are being take care of by wonderful doctors so you will live a long time.
• Children react differently depending on their age.  
• Explain what will happen.  Concrete information helps them know that they don't have to keep  you "under surveillance." This is especially true for kids twelve and over. 
• Explain what will be different in their lives and daily routine.
• Before a child comes to the hospital to visit, or your appearance begins to change, explain in advance what they will see, and as important, what they CAN (as opposed to can not) do. It will help me a lot if you can.....bring a blanket, show me your new drawings, etc.

Two books you may find helpful:

• How to Help Children Through a Parent's Serious Illness, by Kathleen McCue.  St. Martin's Griffin Publishing.  An excellent handbook for parents who want information about helping their children deal with the parents's illness.  
• When A Parent Has Cancer: A guide to Caring for Your Children, by Wendy Harpham, M.D., Harper Collins Publishers. 

In Texas, and for additional helpful information: Wonders & Worries, a nonprofit that helps children cope when a parent or caregiver has a chronic or life-threatening illness.

What did you find helpful in talking about your cancer with your children?

tweet, post, blog, status, pin, insta

WEGO Day 28….Create a must follow list for your community on a single social network. Share your top 5-10 tweeters, blogs, or Facebook pages
OMG a list, OMG my favorite social media outlets, OMG my cyber friends!!!!!! This is a GREAT list. These are my ways of connecting with those who get it, these are my sisters and brothers of the web, Here is my list in no particular order and only a few of them

1. Cécile is a survivor that uses images to not only tell her story but capture her mood. She is from the Netherlands and even though we have never spoke we have found much comfort in each other.
2. Personal P.ink on Pinterest. Molly and her brother in law Noel have found a great outlet for woman that want to cover those scars yet embrace them at the same time. The page is all about ink (you know I love ink) and tattoos, it is meant to give ideas and show the brave woman behind them.
3. Huff Post on Twitter and all the individuals who write for them. The articles are real, honest and do not hid behind a political agenda.The tweets give us the news and facts about real life issues not sensationalism
4. Chris Dean we have no cancer connection, no children the same age, I do not believe she is a soccer mom or wears 6 inch heels but she cracks my sorry ass up!! She blogs in a life is funny way and I look forward to reading her blog every day.
5. I Had Cancer yes I know stop shoving them down your throat. Cancer warriors have you gone there? Supporters have you? They are trying to connect those battling, surviving and those supporting through social media, the site is way easy to navigate and really hooks you up!
6. The TuTu Project just because the man is wearing a pink TuTu for gods sake and that is funny, yet he is doing it to raise awareness and that is awesome!
7. Me, Myself and Breast Cancer my warrior sister way over in Mexico is raising awareness with he FB page. Sometimes the posts have nothing to do with breast cancer and are just to make us smile. Laughter is the best medicine!
8. Cancer Connects is there for all those needs of any cancer warrior. They provide insurance help and alternative therapy plus mentoring for those battling the beast. They are my local FAVORITE and I am thrilled to be their fund raising princess.
9. Jenny Saldana is my latest favorite. I found her video months ago and tried to connect but couldn’t then Twitter hooked a girl up! Chick is funny as hell and is reaching woman in a hilarious manor. Can not wait to work with her!!
10. Condescending Wonka ok totally inappropriate and nothing to do with health NOTHING. But I mean come on all this health crap, activist shit and cancer is hard on the mind. Sometimes you just have to lose your self in the ridiculous!

Sued for not disclosing cancer had returned?

What? But it is a sad state of affairs for Valerie Harper. She was starring in a play in New York City and her brain cancer returned. The playwright and several producers are mad that she didn't tell them until she was having problems on stage from the treatment. So they filed a lawsuit. Tough cookies you guys!

Now I assume she was under some kind of contract with all sorts of weird clauses that you usually do not see outside the entertainment world. But it is stated in law that medical issues are no business of the employer. But they are mad so they are suing her.

And where is their compassion? You may remember in January she disclosed that she had three months to live as result of her brain cancer. She is now cautiously optimistic.

Let me just say a few things about this as I am seriously ticked off:

1. You are morons and being childlike. She was sick and couldn't perform.
2. She has cancer and doesn't know how long she will life.
3. Its none of your business that she had cancer before and she had no way of knowing that it would recur.
4. Finally, don't you have any sense of compassion?

Twits!

what they said.

I am wiped.

I had a CT scan at 7:15 this morning (and we got back late from family adventures in Toronto), so of course I didn't sleep last night, worrying about over-sleeping (as it turned out I had made a mistake setting the alarm but I woke up anyway) and of course about some horrible mass that could be growing on my innards (I have no reason to anticipate bad news but this never stops me from being anxious).

S. and D. were BOTH home today with different viruses picked up over the week end. One is hacking and coughing and sneezing and one has a stomach bug. My immune system feels very threatened.

I am so tired that I'm hysterical and letting my inner hypochondriac run wild (I am half-convinced I have swine flu).

So, instead of words of wisdom, I give you some other wise women's words:



I first saw this video at the conference I went to recently, for women with advanced breast cancer, when Living Beyond Breast Cancer unveiled it there. With several women in the video present for the viewing (and several others represented were women I met in Dallas).

It was very, very moving.

I was talking to my friend Nicole today and she told me she'd seen the video online. I cried again today when I watched it. It also makes me realize that nothing I have to say on living with metastatic breast cancer is remotely original.

Watch it. These women are more inspiring then Susan Boyle.

Seriously.

Tomorrow is a chemo day. Hope to be writing again by Wednesday.

Wishes granted

"If wishes were horses, beggars would ride."

Just over 2 years ago, I blogged about Darlene Grant's video when she was dying of stage IV breast cancer and wanted the FDA to give permission for her to get Perjeta so she might live a little longer. Perjeta was not yet available and she needed special permission to get it.

When I blogged about it, my basis was that she was wishing for things that weren't there. There was no guarantee that it would work. Cancer patients are optimistic about potential treatments because sometimes it comes to grabbing at any straw that comes our way.

But I must say I am absolutely delighted to watch this video this morning. She got Perjeta and she is alive and well today. She has started a non profit to help breast cancer patients.

So while Darlene is clearly riding these days, she is not out of the woods yet. But she did get her wish and she is still here. She will be closely supervised for the rest of her life but looks to count her time in years and not in days as she did in 2012.

HAHAHAHA nice try, but I WON

WEGO HEALTH Day 27 If you wrote a book about your life, your community, your condition, or your Health Activism – what would you title it? Come up with 5 working titles for these books about your life. See if you can focus on a different aspect of your life for each title and even include a quick synopsis of the book if you have time. Then maybe get to work writing the whole thing someday!
“BLAHAHAAHAH nice try but I won”. This book would be all about how I caught that dirty cancer early and won. What it was like to have the satisfaction to kick cancer to the curb. It would be about how self breast checks and mammo with doctor follows ups are the key to early detection.

“Oh no you didn’t”. This would be about how I can not believe that cancer had the idea it could mess with me. About how I have battled a lot in my life but I am still standing. Cancer hit like a bitch and I am a city girl so I fight back with a vengeance.

“Mia Familiga” would purely be about how hard my family fought with me. How they helped, cried (only when allowed) and laughed. More importantly they got tattoos and feed me yummy Sunday dinners. It would be about my friends who are really my sisters and how they are what got me through this.

“Stupid Dumb Breast Cancer” would be all about the money my events have raised. It would focus on my Bravery Bags with Jill and how we want to really help those battling cancer.

“Ding Dong the witch is dead” would be written by my Anthony. He is a great writer and I just know will write my bio some day. He is also the one who is just like me so I know this will be filled with humor. He loves SDBC and all it stands for so I know will focus on that. I also know he will take credit for it all. He will leave his siblings out and make me out to be a witch not a princess. And for that I will haunt his ass!!

Cancer: Round Two

This is how things change.

On Tuesday, April 9 we celebrate DH's (darling husband's) birthday with an extravagant dinner with friends at our favorite restaurant. We make happy noises about the food and pass around bites so rich it is absurd to even contemplate their arterial impact. We simply go with the moment and taste everything.

The next day I'm at MD Anderson for my yearly visit to the survivorship clinic. This will mark - let's celebrate anyway - my 15th cancer-free year.  The mammogram shows an anomaly.  We take another view. The second shot is inconclusive.  My nurse practitioner meets me in the exam room and says, "I don't want to alarm you, but we need to get another an ultrasound to make sure it's benign."

I'm not alarmed. Lobular breast cancer, which affects approximately 10 percent of all breast cancer cases, does not image well.  Never has, never will.  It's sneaky. The cells line up in a single file instead of clustering to form a mass.

But by the time I'm in ultrasound, where a radiologist in heavily accented English says, "Do not talk when I have needle in your neck," I realize, this is how your life changes.  I see the oblong node above my collar bone, a plump little dude, and the needle moving up and down within it.  For a moment something pierces. "So sorry," the doctor says, "I didn't put novocaine in the muscle."

I know.

The ultrasound room is so dark and quiet it has become its own universe, sealed off from regular life. Yet I know that behind the door is a small waiting room where four or five women in bathrobes are waiting. They read old magazines, legs crossed, feet jiggling and twitching. Those gestures mark time. They are waiting while I'm lying still, insanely comfortable on a new gurney (brand new, $4,000 worth of new, the wonderful ultrasound tech informed me) and bundled up in heated blankets. Then I realize a third person is in the room; the pathology assistant for the second, then third biopsy. The tissue will be analyzed immediately. I will know what I need to know what I already know from seeing the enlarged lymph node on the screen. Between biopsies I actually fell asleep. Right now that is my operating definition of mercy, to understand that another diagnosis of cancer is imminent and to be all right with that knowledge.

With cancer it's not one simple moment but a series of steps, one leading to the next. By the time I arrive home, when DH asks how my visit went, I have to tell him, "not well." He is a three-time melanoma survivor. "Not well" tells him something he never wanted to hear.

*  *  *

Since April 10 I have been largely offline,  either at MD Anderson or trying to get the next appointment in place, and talking with gracious physicians who have been generous with their time, explanations and kindness.  

Plus after 15 years NED I now enter the changed world of cancer diagnostics.  I am no longer a CT or MRI virgin. I drank the fruit-flavored barium smoothie, I've had the contrast IV's.  I ran into the inevitable young phlebotomist who missed a vein the size of a worm; I looked at her pleasantly and said, "go get someone else." 

The scans showed a different, but not rare, metastatic trail. There is nothing in the lungs or liver; but lymph node involvement and small nodules in the peritoneum and along a lymph chain that travels behind the diaphragm. There are positive nodes in the left axilla and neck, which were discovered by ultrasound. There is NO second primary cancer. All of this stems from the first cancer, so neither surgery nor radiation are needed at this point.

Biologically? The cancer's make-up is the same: 100 percent estrogen positive, progesterone negative, HER 2-neu negative. It's time to take away this cancer's food source. I'm about to be so thoroughly estrogen deprived that what I used to complain about menopause will soon become "the good old days." There are many options for shrinking this cancer and I have every hope that this will happen. The fact that it has been 15 years since my original diagnosis helps considerably. 

Last night I started treatment via the local Kroger's, where I picked up a prescription for Femara (letrozole), an AI or aromotase inhibitor. Where tamoxifen blocks the estrogen receptors on cancerous cells themselves Letrozole blocks the enzyme that converts androgens into estrogen in postmenopausal women. In premenopausal women the ovaries are the primary estrogen source.  In two months we'll look at what the Femara has accomplished, then consider the double whammy of Aromosin (exemestane) and Affinitor (everomilus),  another AI combined with an oral chemotherapy agent. With both approaches I'll receive monthly injections of Xgeva (denosumab) to shore up my bone strength.  

This morning DH wonders if I've experienced any side effects.  "No," I told him, "all systems are go."

It has been difficult, and still is, to relate to this new information.  Yet my life is different.  How I prioritize will be different.  One thing is steadfast: my commitment to #BCSM and advocacy. This is as strong if not stronger than ever. So is my knowledge that I am not alone in living with metastatic breast cancer. When there are times of complete stillness, I know all of you will be with me.  That is how I feel about you.  And that we are all in this together, in this moment and those to come.

* * *

Quick access to medical care

Do you see the nurse or the doctor (or the physician's assistant)? Back in the good old days, you went to the doctor and saw the doctor. A nurse might come in and take your vitals, bandage something up, or some other task that was below the doctor's capabilities. They were doctors and didn't do the basic stuff that would take away from their schedule.

Now you may see the doctor, the nurse, the nurse practitioner, or a physician's assistant or even someone else.... Does it make a difference? Not really. They all give out prescriptions, send you for tests, and diagnose and treat you. They all talk to each other if there are any questions.

Back when I was young and athletic in the 80's and 90's, I used to go skiing with Club Med in Colorado (an awesome vacation every year for seven years). One year, I was put in a group of skiers which included several doctors, a nurse, a few others, and me. It snowed overnight so we went skiing in the back bowls to enjoy the fresh powder. This entailed a hike up over a ridge in loose snow at about 14,000 feet (gasping for breath), over the head wall singly, and reconnect as a group with the instructor last to clean up any debris (skis, poles, hats, gloves, etc) to ski down for a mile or two, take another lift back up to ski down the front side of the mountain.

All went as planned. Each of us went over the head wall and into the loose powder (and you say 'why is she telling this story' - be quiet there is a point here) and across the flats. Last came the instructor, schussing across the flats, until his ski hit a rock just under a thin layer of powder where the wind had blown off the other foot or so of snow. He did your basic rolling fall with equipment going everywhere (similarly to 'the agony of defeat'). We started back to help pick up everything and give him a lot of sass for it.

All jokes ended when we saw the blood pouring out of his face. In a rather inaccessible place in the mountains, he caught a ski pole in his face and ended up with an 'Al Pacino Scarface' injury. The doctors stood and gaped and said they hadn't seen anything like that since internship. The nurse ran to his side and started yelling for clean tissues, napkins, bandanas, anything to apply pressure and stop the bleeding. The nurse knew what to do. She fixed him up and rode the chairlift back up with him and went with him to the clinic where he got five stitches in his face. The doctors went to lunch.

So on that sunny day on a ski slope on the backside of a mountain in Colorado, the nurse was the winner.

Now when I go to see my PCP or oncologist, I often see a nurse practitioner. When I see my pain doctor, sometimes I see his physician's assistant. Its not that big a deal. Particularly with my PCP, if I have a new ailment and need a visit as soon as possible, I'll get one of the nurse practitioners. I could wait a week before seeing my PCP or see the nurse practitioner. I'm happy with the sooner visit.

Think of this as well. Do you remember going to the dentist and the dentist cleaned your teeth? Now a hygienist cleans your teeth and a dentist does fillings and other nasty things with drills and pointy things. When I go to the eye doctor a technician checks my vision and glasses prescription and the ophthalmologist checks my corneas.

All this is for quicker medical care and more use of specialized training in different parts of the medical world. I'm all for it - I want the quicker access to medical care.

Shut up and squat

WEGO health Day 26 ….What’s a day that you wish you could have used a pain-free pass (either in the future or the past)?  How would being pain or worry-free impact that day

One day, just one?? Ugh I am such a greedy girl! I want every day physical pain free,  I like being a pain in the ass. I think I will skip the emotional pain that takes way too much therapy!!

I haven’t had a day were I could pin point. It seems like every surgery brought some intense pain but I fought through that. I can however scream about my work outs. I want to do box jumps, thanks to my hysterectomy they suck and not in a good way. It is physically hard to jump up, all those muscles need to be retaught. I want to do pushups, you know the real deal not pansy ones!! But  find it physically difficult to do them badass. If only the pain would go away then. Or when I want to do a full burpee, I do love a burpee. It would be just great to actually work out like the old days, remember those MC? Where the boys in the yard would watch us? Not cause we are so hot but because they are so impressed with what we were doing. Do not tell me I will get there, I get that part. Accepting it is the hard part. I hate waiting and I hate losing that UMPH!  Where do you think I learned to keep that tiara so steady?? It isn’t easy to squat, pushup, or do jumping jacks with that thing on!

every three months

Exactly how often should someone living with metastatic breast cancer undergo the tests that monitor our health?

These CT scans, ultrasounds and MRIs are inevitably nerve-wracking, expensive (even if we don't pay for them out of pocket) and sometimes come with a risk of cancer inherent in the test itself. Cancer patients waiting for tests results refer to being in a state of "scanxiety." 

It's impossible to describe what it feels like to wait for test results, unless you've been there.

And those of us with metastatic breast cancer go through it over and over again. It's brutal.

When you live with metastatic cancer, one of your greatest challenges is balancing potentially life-saving interventions with the quality of the life you're keen on saving. It's important to check often enough that you catch any change quickly but not so often that you spend your entire life waiting for tests, undergoing tests and then waiting for results. 

Because that can be paralyzing.

I was speaking to a friend last week who was considering delaying scheduled scans by a few weeks. She said that it  had been implied that she wasn't fighting the way she once had. This made me furious on her behalf, as I can completely understand her need for a period of sanity, when cancer isn't always at top of mind.

In my case, I have the advantage of being in remission and the disadvantage of having an un-protected brain. I know it could just be a matter of time until the next brain tumour. I want to be able to catch it quickly. I also want to stop living my life from scan to scan.

I currently have brain MRIs every three months, at the suggestion of my surgeon. My oncologist would like me to wait until I'm symptomatic but I just can't do that. I have symptoms all the time. Symptoms of brain tumours include headaches, irritability, nausea and clumsiness. Who doesn't feel any of those things from time to time? 

My last scan was April 10. On April 14 my lovely GP called me and opened with the line, "Want to hear the good news?" 

All is well and I can wait another three months until I go through all of this again. 

Or maybe I'll let it stretch to four.

on finding my Thing

I had a breakthrough moment a few weeks ago. I've written quite a few posts over the last few years about the loss of identity I experienced as a result of having to leave the full-time work force. Letting go of my identity as a long-hour-working-communications-research-professional-activist-labour-staffer was really hard.

Since going into remission (and no longer feeling that fighting for my life was my main job) I've done an awful lot of navel gazing and spent a lot of hours in therapy trying to figure out who I am, since I no longer define myself by The Job.

Sacha, my perceptive and thoughtful son sent me a link to a wonderful article and inspiring article by Jesse Thorn. His instincts were right- I've been looking for my Thing.

I think I've been putting too much weight on each new idea, though. Every potential project would need to give me a new identity - provide the answer for when someone asks "What do you do?" 

But the truth is that no project can fulfill all of anyone's needs. And I was scaring myself off of trying new stuff because I was afraid that it wouldn't work out and that I'd be searching all over again. 

My "aha!" moment came with what should have been a pretty straightforward realization. I'm not looking to redefine myself. Overall, I'm pretty happy with who I am. What I want is to feel fulfilled, purposeful and happy.

I will never be able to define myself with just one word. I am a mother, wife, friend, writer, lover of dogs and books, social observer, activist in and out of the armchair and, occasionally, an opinionated bitch.

My Thing doesn't have to be my everything. I just need to figure out the things I love to do and allow myself the time to do them. I need to be brave and take risks but if today's Thing doesn't work out in the long run, that's OK too.

I may never have a few short words with which I can define myself at cocktail parties but I hardly every go to those anyway. Life isn't about creating an identity that others can understand and judge. Life is about living in the best way that I possibly can.

Preparation

I have to get prepared. For what you might ask? Doctor appointments. On Monday I meet with my pain management doctor. I need notes to ask him questions. If I show up with a list, he wants me to read him my questions and then he answers each one. If I do not remember my list, I sometimes feel rushed with him. He has a very efficient manner so, in his efficiency I sometimes do not get all my questions answered because I forget to ask them.

My questions for him will cover my (annoying) back pain. My lower back pain is caused by my degenerating disks. It only happens if I bend over or attempt gardening (which I love) or sweeping, shoveling or vacuuming (which are  optional activities in my life). The decision will be do we do more needle treatments or not. Probably not.

My upper back pain is caused by fibromyalgia and myofascial pain. We can do more needles and things but they can be very helpful. The problem is they make me uncomfortable for a few days and we are going away for our anniversary (and will have a house/cat sitter so burglars don't get any ideas).

On Wednesday I see my rheumatologist and I have a big list for her. What to do about numerous body parts and their aches and pains. Do we stay on the same medications or do we switch or add others? I don't like the idea of more medications but I also want less pain in my life. And sometimes the side effects (mouth sores) of my current medications make things like eating difficult. Not that I wouldn't mind eating less and losing weight but its the pain part that I dislike.

I need my list for both or my chemo brain/fibro fog/whatever will not allow me to recall a damn thing when I get there. My life is full of some many adventures isn't it?

Upstate/Downstate

Rocking my shirt XO Downstate AM

WEGO Health Day 25….We don’t stop learning when we leave the classroom. Share something you learned from another Health Activist (Share their name/blog/website!).

I met downstate Anne Marie when I was searching for blogs to help me with my diagnosis. I hit on Chemobrain . When I found her I was so excited, her name was Anne Mare (ok I will give her the “e”). I never really loved my name I wanted to be Tracy, Tammy, Shelley-yes I wanted a “Y”!! So I have this thing with Anne Maries:), they make me happy. Plus, she was a New Yorker.
We chatted away and had a lot in common. We talked not just about our stupid dumb breast cancer but our heritage too. Grandmothers, mothers, and friends! It was a great connection, Then she said “I want to talk to you about Komen”. My gut sank, ugh she is a Komen hater and I am a Komen lover, looks like this friendship is over. I watched her tweet about the reason, blog about it and every time I cringed a little. Here is the thing we talked it out yes but she did not hold our differences against our friendship. Instead she said what she wanted and I said my peace. That was it. The thing is she taught me to check the grassroots groups. I hesitated at first but then found Cancer Connects.

Had Anne Marie not taught me about these smaller groups I never would have looked into Cancer Connects. I am so happy she did. I am proud to their fund raising princess. They are here for cancer patients when insurance isn't. They provide not only mentoring but therapy that eases the journey just a little. I can not want to for the Kick it to Cancer event that is the start of this beautiful relationship!

So thank you Downstate AM, had you not given me your thoughts I would never have found such a wonderful group to work with! Thanks for teaching me to think bigger yet look to the smaller groups.

filling that prescription

A few years ago, I worked my way through the Artist's Way. I found the process to be extremely helpful in getting me past my writer's block and I followed the program dilligently - except for one component. In all twelve weeks, I did the Artist's Date exactly once.

I know in my head that play time fills the soul. And I know that the repetitive motions of knitting can spark creativity and be enormously soothing. Yet I seldom set aside time just to knit unless I'm watching a movie with my kids,out on a knit date or on a road trip. And I know, too that I chose knitting as my play because I usually have a product at the end that someone can use. This makes the time easier to justify.

But human beings need to play in order to be happy. And the benefits of creative time spill over in to so many other aspects of our lives. Blondie, one of my favourite bloggers wrote in a recent post she wrote after a night of insomnia:

...I got up and went to the couch. Sitting on the footrest was the latest cross stitch project I've been working on. It hadn't been touched since sometime last week. I can't even remember when I started it? I picked it up and worked on a little flower. In no time at all, I felt my body and spirit relaxing. I realized I was holding my entire body slightly UP and in a very unusual and stiff way. I was wound up TIGHT. If you touched me, I probably would have zapped you with a long, blue, electric arc. But after a half hour of stitching, I was much more calm. Even the kittehs seemed more relaxed. Collectively, we were detoxing. And after I made some good stitching progress, I made myself go lie back down and try to sleep. Eventually, I did.

Blondie called her post "Prescription for Art." I think this is perfect. Indulging our creative needs should not be an afterthought but a prescription for mental health and happiness. As Blondie points out in her post, art is good for our bodies and our spirits. We should all make time for it. The product need not be perfect. It's the process that matters.

We can't all make great, or even good art. But perhaps this prescription applies most of all to those of us who would never call ourselves "artists." We can all seek inspiration in the world (and from art of all kinds) to make stuff and make ourselves a little happier.

not done yet: where to buy

Are you getting tired of the relentless self-promotion? Well, like the book, I am Not Done Yet.

I do, however, promise a return to regular programming (at least temporarily) very soon.

Folks have been asking where they can buy my book so I thought I should pull that info together in to one post:

• You can buy the book directly from the publisher (the glitch on the order form has been fixed and it should work easily now). You can link to Women's Press any time, by clicking the photo of the book on the right.

• You can order from Octopus books (or drop in and buy it if you live in Ottawa). And, if you live in Canada, ask your local book store to order the book (this may even work in the US). Please support your local independent book store.

• You can also place an order through Chapters (although the statement that the books usually ships in 3-5 weeks is a bit disconcerting

• The book can be ordered from Amazon.com but not, for some reason, through Amazon.ca.

• Finally, you can order the book directly from me (I have run out but have ordered more). This is the way to get a signed copy. I charge the price of the book and whatever it costs me to mail it (plus GST, in Canada). If you want to go this route, you can email me at "laurie DOT kingston AT gmail DOT com.

Please do let me know if you encounter any bumps when you try to buy the book, so that I can make things right.

Yes that is too expensive

The UK's, NHS has said they won't pay for Roche's new Herceptin like drug called Kadcyla because they have deemed it too expensive for what it does. The cost is a paltry 90,000 pounds or just over $150,000 per patient and it extends a woman's  life with metastatic breast cancer a median of 5.8 months.

Currently there is the Cancer Drug Fund which  will pay for the drugs in the UK that are not covered by the NHS but that fund runs out in 2016. The decision is being criticized by Roche and some charities saying that the NHS has turned down too many breast cancer drugs recently. But I really think the cost is out of line.

No you cannot put a price on someone's life as I have stated before but this is a bit much. My complaint here is with Roche and other manufacturers who price their medications so high, and essentially put a price on a patient's life. The claim is that development for new drugs costs so much that the prices end up so high.

Roche's sales in 2013 were over $50 billion with profits of around $17 billion. So they can't use some of those few billions to pay for the development costs of other drugs? And the shareholders saw their dividends increase by 6% from 2012. I have zero sympathy here. But I am sure their shareholders  nd executives are happy.

And let me guess if they can't get this price overseas, they will charge the American patients the full price.

Words and blogs and mastectomy OOHHH MYYY



http://pinterest.com/amero/

WEGO Day 24…….Wordless Wednesday, Create a Pinterest board for your health focus.  Pin 3 things. Share the image.

10 years old

Dear Daniel,

Yesterday, you turned 10. In honour of this momentous event, I thought I would list just a few of the things I love about you:

You cherish being funny. Your humour ranges from the brilliantly witty to jokes that have a lot to do with farts.

You are sensitive and full of empathy.

You are fully awake from the moment you open your eyes, every day. Sometimes, you complete the sentence at dawn that you started before you fell asleep the night before.

You revel in making others smile. You take great pride in being "a nice guy."

You will make up silly walks the whole way to school.

Some mornings, you say "I'm awesome" or "I love being me." These words fill my heart to bursting with happiness.

You have your own sense of style and the confidence to be yourself.

Your enthusiasm for life and it's adventures is completely contagious. I enjoy almost everything more when I do it with you.

You are a voracious reader. You love words and language and you use them with great dexterity (if you don't know this word, you can go look it up).

You wear you heart on your sleeve. The people you care about know they are loved.

You make me happy every day of my life.

I love you to the edge of the universe and back, multiplied by infinity.

out loud

I have some good but also personally nerve-wracking news. I'm going to be reading next week at Blog Out Loud. That means I'm going to be reading a post I wrote on this blog OUT LOUD. In front of people.

What was I thinking?

Actually, I am very proud of myself for submitting a post to this annual event and prouder still for having been chosen (although this pride is mixed liberally with "why me?"). Blog Out Loud is organized by the fabulous Lynn Jatania and this year the event will be part of Ottawa Writers Festival. So after next Tuesday, I get to say that I've read at Writers Fest. How cool is that?

Here are the details:

What: 11 bloggers read their favourite post of the past year

Who: Anyone who likes to hear good stories or see amazing images is invited to attend

When: April 29, 2014, 6:30 p.m. SHARP
Where: Knox Presbyterian Church, 120 Lisgar Street, Ottawa.

There is no charge to attend.

I'd love to tell you which post I'll be reading but I've been asked to make it a surprise. You'll have to come to Blog Out Loud to find out.

"not done yet" reviewed at "mothers with cancer"

Mary Beth Volpini kindly agreed to review my book for our group blog, Mothers With Cancer:

There were entries that I laughed while reading… Monday, July 3, 2006 as her boys pretended to be Wolverine. The most touching entry to me… Wednesday, October 10, 2007 Etching Myself in their Memories … spontaneous tears ran down my cheeks right there in the hair salon. I share those same haunting thoughts.

I am glad that I had the chance to learn more about Laurie. I applaud her courage, her creativity and her approach to life. “Metastatic cancer has not ended my life; it has just caused me to live my life differently.” If my story becomes more similar to Laurie’s, I hope I proceed with the same courage and positive outlook.

You can read the rest of the review here.

Mary Beth is an artist and you can see some of her work, at her personal blog.

You can call me a wimp

Last night I got together with two friends - one of whom I haven't seen in over 30 years. We were laughing about the fact that when we last got together we were too young to drink in a bar legally. The other friend is one who I have kept in touch with pretty much all through the years. We both have RA but her's is much more under control than mine, or maybe my fibro and back pains make me more complicated.

We caught up on life and loves over the decades. My RA friend's husband is dealing with stage IV colon cancer and is in clinical trials because there is nothing much else left. Based on my other friend's reaction to that news, which was surprised, supportive, and dismayed, I was unsure about sharing all my health news. I said my health is horrible but I'm still here. I skipped the cancer parts.

Why was I hesitant? Because once burned, twice shy. I have been burned too many times but old friends who run from the word cancer. We already have plans to get together again so I'll wait and decide later.

But in the meantime, you can call me a wimp.

Here are the papers you need to fill out, UGH

“I wish this gizmo could track my condition!” Write about which device, application, program, etc. you wish helped to track your health. Day 23 WEGO HEALTH


No matter which doctor you go to you have about 10 pages of paperwork. Questions that you have answered a million times, one that are ridiculous they are almost hard to answer. Are you pregnant? Seriously, I not only have nothing to catch the swimmers in but nothing to hold them in. Do you breast feed? UMMMM only if the baby likes silicone. Have you had a mammo gram? Yeah we covered that a few times. The best are list your surgeries with dates. Not only can I never remember the dates but there is never enough space for all of them Wouldn’t it be great if we had a barcode? The office could just scan it and have all your info right there. You could go online type in the numbers to you code and see your results, NO WAITING!!! You could enter any questions and they would be answered. Plus, you wouldn’t forget important info, like you have expanders in and can not get a MRI!!! All your meds would be listed and when you need a refill. If you have an upcoming doctor appointment BAM it is there. Shit you could even list what you ate so the doctors would know. This would save on their paperwork too, no more hauling those folders. This is a green solution for sure. Yes, I know some may not want to get branded but really once you have had your breasts removed, uterus/cervix/tubes/ovaries all ripped out you lose this sense of modesty and you just want to not fill out another piece of paper. Not to mention I had 4 kids, you have no idea how big my file is at my doctors. They literally need a forklift to carry it. I see a future for tattoo artist here no doubt!

d: a photographic retrospective

Earth Day is also D. Day. And a good day to look back over the last six years:

2003

2004

2005

2006

2007

2008

2009

Happy birthday to a wonderful boy.

all clear

I got my CT results yesterday - via a very casual voice mail message:

"This is A. calling from the Cancer Centre. Your scans were normal. Thank you."

So there you have it. That's almost three years clean now.

And now on to making two birthday cakes (D. is 7 today), cleaning the house and doing the myriad things one needs to do before going away for a few days.

I'm not living the life I imagined for myself, but I'll take it.

A stupid idea in my opinion

So would you wear a breast cancer sensing bra? Or even add a smart device to your bra that would be an early warning for breast cancer? I think this is stupid.

The premise is that self exam and mammogram compliance is not 100% that this way your bra or a gizmo attached to it can detect breast cancer early. Hmmm.... Nope. No way.

Personally I wouldn't wear one if you paid me. I think it plays to the insecurities of all women who are scared they might develop breast cancer.

The developers of this gizmo have raised $560,000. It has the CE mark so they will start selling them in Singapore. This brainstorm  is because the Singapore government gave away 10,000 mammograms but only 30% were used so they feel the need is there. So are women in Singapore who didn't bother to get a free mammogram going to wear a gizmo on their bra? I am not so sure.

It still needs to get through FDA trials here and will take a few years but I won't be buying one. Sorry. I think this is an idea that had good intentions, but not going anywhere.

I got needs you know

Write about the things you couldn’t live without – list 10 things you need or love most. WEGO Day 22
 

I just love a good list one you can cross things off and feel like WOW I got shit done. I have this talk with my kids all the time needs versus wants. I guess this list will have to be based on needs, damn it all to hell a want list is much more fun. No doubt through stupid dumb breast cancer this list has altered but I have always been a breast health advocate, the irony is that I got breast cancer. I really thought I had a deal with the breast goddess, I guess the deal was my advocacy was going to be pumped up.  You know I am going to start this with a song. These are a few of my favorite things (now that’s a nice jingle for the morning!)
  1. The obvious a CURE, I feel so typical for writing that but it is the truth. How is it that we can find a way for a man to sustain an erection, but can’t cure a disease that is killing people even children. There has to be more advances.
 2. My kids to see a world where there isn’t hatred. I want them to be empowered by love so they can thrive! I hate having to explain evil to them
3. The image of the pink ribbon is great, I support it. But it isn’t what cancer is. It isn’t all pretty and tied up nicely It is painful and scared. I want people to see what is behind that ribbon, the real faces of cancer.
 4. A pair of Christian Louboutin’s. That has NOT changed through this whole process. And yes it is frivolous and will not solve a damn thing but it makes me happy.
 5. Woman need to really do self breast checks!!! Stop telling your doctor that you did it and actually feel them breasts. The best way to stop breast cancer is early prevention, the key to early prevention is staying breast healthy. I am living proof of this.
  6. I need my dad to be happy. I feel like he is finally after losing my mom 40 years ago, doing just that. I am so thankful for Deb, cause shit I was going to have to take care of his old butt and I have 4 kids!!
 7. People need to stop judging someone else’s journey to their own. We all struggle in different ways but we all want the same result, to LIVE life. I mean can’t we just help one another instead of making it a completion???
 8. I have a need to help those battling cancer now. Yes research is vital but what can we do about those sitting in chemo, going into surgery?? That is why Jill and I created Bravery Bags, we want to show those battling that there are actual survivors supporting them.
9. I need an oompa lumpa. I mean come on there were suffering on their island and need love. I would love for them to clean my house, do the laundry, go run errands and I would love them for that! (Sorry coffee is just sinking in and I don’t want to be serious right now)
 10. Wouldn’t it be great if we could find the route of cancer and stop it before it started?? I know we have the genetic testing but what about those who have tested negative (MEEEEEEE that is me!!). I need answers to why I got breast cancer. Stress?? Environment?? Hormone’s??? There is an answer out there, we just need to find it. Maybe just maybe the answer is on one of my kids, would that be an irony of the fabulous kind??


I would like to point out that not once I said I need to be a princess, not once!! Maybe because I already am.