Happy Birthday to my Professor

For better or for worse.....yup covered those

In sickness and in health ......oh yeah that is covered

Till death do us part....ok no death right now

I have spent the last few days really thinking about my husband Tom. We have been together for 20 plus years, wow!!! We met through some friends that were getting hitched, Sean says it was instant chemistry and I agree. Tom knew what he was getting into, because when he met me for the first time I jumped out of the bushes to scare them. That was it, it was fast and we jumped into it head first. Did we do some crazy dumb things? Yes, but as of today it has all worked out. Like every relationship, it has been rocky, sometimes like Rocky Mountain high. We have fought hard to get where we are and I like it here, it is soft and cozy. I could sit here and type how great he is, what an amazing father he is, true friend, solid son (and son in law!) but that is all easy. And I want the reality, check it.

He loves me, completely with such intensity is scares me sometimes. He wants to always be my knight is shining armour (he knows I like sparkle). When I was first diagnosed, that was the hardest thing for him. He couldn't fix it. There was nothing he could do but watch. Yes, he was there for me and said kind words. He is a male so sometimes they were dumb, too, but all with the right intent. Yet he still couldn't make cancer go away and he hated that. I saw the anger and frustration but under that was love. When I want to cry I have his shoulders, when I need to punch he is ready, when I need to just be alone, well, he is working on that. I have a lot of great friends, a few best friends, but he is my needed friend. After all these years we have seen that we need to learn that- how to be there for each other. I am so proud of how he has seen this and done his job to make it happen. Everyone says "Bless Tom to put up with AM", I say that is true. I am a ball of fire to his calm ocean tide. Damn that was corny as hell! Yes we could not be more opposite, right down to how we grew up. Somehow it works, not always, but we are good at repair.

Happy Birthday to my.....ying to my yang, my spelling checker, grammer correcting fool, my stubborn mule, guitar playing, concert going, beer making, love me crazy but I like crazy and feel good there, my safe spot, my silverware drawer cleaning at the wrong time, waiting in the car, father of my pain in the ass kids who we both love no matter how many dumb things they do, my ahhhh he is home guy, my jesus christ pick up your socks before I snap man, my kisser, my TOM I can't reach something, my cupboards open, lights on, beared, lost his keys, where's my wallet, getting lost, we have to turn around I missed the exit MAN!! I am sure that sentence may just send him over the edge, MWAH:0)



i wuv u birfday boy

It is not perfect love but its our love. Grammar mistakes, annoying kids, cupboards open, recycling over flowing, loud ass Italian family, stupid dumb breast cancer LOVE. Happy birthday professor, I am forever your princess.....


"That's Amore"

(In Napoli where love is king
When boy meets girl here's what they say)

When the moon hits you eye like a big pizza pie
That's amore
When the world seems to shine like you've had too much wine
That's amore
Bells will ring ting-a-ling-a-ling, ting-a-ling-a-ling
And you'll sing "Vita bella"
Hearts will play tippy-tippy-tay, tippy-tippy-tay
Like a gay tarantella

When the stars make you drool just like a pasta fazool
That's amore
When you dance down the street with a cloud at your feet
You're in love
When you walk down in a dream but you know you're not
Dreaming signore
Scuzza me, but you see, back in old Napoli
That's amore

(When the moon hits you eye like a big pizza pie
That's amore
When the world seems to shine like you've had too much wine
That's amore
Bells will ring ting-a-ling-a-ling, ting-a-ling-a-ling
And you'll sing "Vita bella"
Hearts will play tippy-tippy-tay, tippy-tippy-tay
Like a gay tarantella

When the stars make you drool just like a pasta fazool)
That's amore
(When you dance down the street with a cloud at your feet
You're in love
When you walk down in a dream but you know you're not
Dreaming signore
Scuzza me, but you see, back in old Napoli)
That's amore
Lucky fella

When the stars make you drool just like a pasta fazool)
That's amore
(When you dance down the street with a cloud at your feet
You're in love
When you walk down in a dream but you know you're not
Dreaming signore
Scuzza me, but you see, back in old Napoli)
That's amore, (amore)
That's amore

random travel observations

I decided when I was on my walk around the hotel grounds this morning that the complaining I did earlier made me sound very spoiled. The truth is that this venue seems pretty ideal for a conference and I am extremely lucky to be here (and I mean that in so many ways). It would be great if it didn't cost $3.25US for a coffee but it is what it is. And I am assuming there will be free coffee once the conference starts in earnest.

Yesterday was a very long travel day. I miscalculated and finished my book way too early in the trip. As a result, my notebook is filled with random observations I made as I sought to fill the time:

I always feel nervous and guilty when I go through security, immigration or customs. I feel like I am going to be "caught." This is ridiculous since I never lie in these situations or smuggle.

There are signs up at US Immigration stating that all travellers will have their hands scanned and photos taken. I only saw this happen to one person. He was an older white guy so not sure if this was random or some new kind of profiling I've never heard about.

You wouldn't know that the North American economy is in crisis, judging by the number of people who are travelling. Both my flights were full, with long standby lists.

My flight out of Chicago was delayed because the plane was struck by lightning. Folks were very upset but I kind of felt that I would rather have a safe plane than one that left on time.

I have never had a sandwich in an airport that didn't taste like cardboard.

One woman seemed to think that the airport was a great place to find a boy friend. In the waiting area in Chicago, I overheard the following conversation:

40ish Blonde Woman (flirtatiously): "Watcha readin?"

Attractive 50 something man: Mumbled title.

Woman: "Is it a Christian book?"

Man: "I suppose it is."

Woman: "That's what I had heard about it."

Man: Silence.

Woman: "You seem really interested. You just keep writing things down."

Man: "Just noting some things."

Pause.

Woman: "Do you live in Dallas?"

Man: Silence.

Woman: Launches into detailed explanation of where she lives. Mortified I get up and leave.

Some time later, after we change gates, I see them again. She is calling out to him, "Don't go away! I'm a catch!"

A few minutes later, she has moved on to another man. From across the waiting room I can hear her talking about going to church.

So - was she prosletyzing or cruising? Or both?

When I am desperate enough, I will read anything. Apparently this includes the in-flight magazine (this month's issue features the NBA) and something called Skymall. I found myself coveting this and this and thinking this was kind of gross. And then I felt guilty that I don't have anything like this to protect my neighbours from my unsightly air conditioner (but what would protect them from all the unsightly dog poo in my yard?). I could go on and on. And the prose in the catalogue was fantastic.

I was too shy to talk to two women I saw at the Chicago end of my flight who I guessed were going to the conference. I redeemed myself by greeting them as we waited for our bags in Dallas. They told me that they have been coming to this conference for six years. They promised me that I was going to have a wonderful time. They also told me that they are expecting 1,000 participants this year. Wow.

The "Networking Opportunity" I mentioned in a previous post is happening now. Time to take a deep breath, gather up my leis and head on down.

lost my mojo

Mid-winter blues.

Bored.

No new ideas ("said it all before" syndrome).

Too much loss.

Whatever the reason, I have not felt much like blogging (or doing any writing) lately. 

I couldn't even muster up the energy to blog about the recent Komen debacle (although I took it all in with great interest).

And I can barely bring myself to think about Rachel (a scathingly brilliant and funny anti-pinkwashing activist and kindred spirit) or Susan (an equally brilliant leader, founder of Mothers With Cancer and mother of two young boys) without becoming undone. They deserve the kind of tributes others have written but I can only say who devastated I am that cancer has taken two more wonderful women.

So, I've been taking a break. 

And fallen out of the habit.

I think I might be ready to come back soon. Or to get back to writing down some thoughts.

And spring will come soon too.

Meanwhile, please know that all my latest tests have been gloriously normal. I'm doing OK. I just need to get past this dry spell, so I can return to writing with joy and enthusiasm.

classified

I'm green and orange. As with previous events of this nature, I like to identify others who know what it's like to live with mets. I am also acutely conscious that wearing the orange may be every participant's worse nightmare.

Is Metastatic Breast Cancer on the Rise in Young Women?

Update: 3/2/2013: Ann Partridge, MD, director of the breast medical oncology at the Dana Farber Cancer Institute, with excellent questions on the study data and findings: see below.

Update:  On Thursday, February 28, #BCSM co-moderator Deanna Attai, MD added more clarity in this appearance on @MyFoxLA

Something long noted in breast cancer circles was study coming out today in the Journal of the American Medical Association that found a very small, but statistically significant, increase in the number of young women between the ages of 25 to 39 who are diagnosed with metastatic breast cancer.  

The change noted comes down to an absolute increase of 1.37 women per 100,000 women over 34 years, or approximately 2 percent per year. The same increase was not noted in older women and was consistent across all ethnic and socioeconomic groups.  One surprise is that there was a more pronounced increased in women with hormone sensitive breast cancer, rather than ER- cancer. 

Why this is happening is yet to be determined and was not the purpose of the study. We are left with more questions than answers.  

Studies are often complicated, and this one, a retrospective, observational analysis of three different sets of incidence and survvial rates from the US Surveillance, Epidemiology and End Results (SEER) program at the National Cancer Institute from l976 through 2009 - even more so. The collection of SEER data began in l973, yet the study years ran from 1976 - 2009.  Even the largest data set used, SEER 18, only comprises 28 percent of the US population.  SEER 9, by comparison, only includes 9.5% of the population, and the third set, SEER 13, 15 percent.  

Study author Rebecca Johnson, MD, Seattle Children's Hospital and University of Washington, wrote in the study that, "Whatever the causes - and likely there are more than 1 - the evidence we observed for the increasing incidence of advanced breast cancer in young women will require corroboration and may be best confirmed by data from other countries.  If verified, the increase is particularly concerning, because young age itself is an independent prognostic factor for breast cancer."

Vast improvements in diagnostic imaging between 1976 and now, staging work-ups and other factors come into play.  "The changes noted may be multifactorial," said Jennifer Litton, MD, of The University of Texas MD Anderson Cancer Center, "with changes in rates of incidence and younger women having more aggressive underlying biologies  coupled with potentially other genetic factors. What is much more clinically important than this would be changes in overall survival."

Breast cancer advocates concur. "These numbers do not change it for anyone who dies of this disease today," said Joy Simha, co-founder of the Young Survival Coalition. "We need to focus on finding the cause of breast cancer so we can make change happen."

Another aspect confirms what was discussed in last night's #BCSM discussion. "What the study enforces to me is the need for all young women to be aware of changes and to be proactive about their health," said Deanna Attai, MD, breast surgeon and #BCSM comoderator.  "Doctors need to be educated that there's no such things as "too young for breast cancer." No such thing."

For women with breast cancer today?  Nothing changes.  If you're in treatment today? Nothing changes.  But if you're watching the larger picture of cancer incidence in the United States in a population that already suffers unduly from a breast cancer diagnosis?  Heads up.  This is a signal we need to heed. 

#   #   #

3/3/2013:  Comments from Ann Partdridge, MD:  breast medical oncologist from the Dana Farber Cancer Institute in Boston and medical advisor to the Young Survival Coalition: 

It is not clear from the study "whether the overall rate of breast cancer in young women is actually increasing," said Ann Partridge, MD, a medical oncologist from the Dana-Farber Cancer Institute and Harvard Medical School in Boston, Massachusetts. In other words, the study does not indicate whether the increase in advanced disease means that there is an overall increase in disease in young women.

That is important because other studies using SEER data have indicated that the rate of overall disease is stable in young women, said Dr. Partridge.

She pointed out that Dr. Johnson and colleagues found that the rates of localized and regional disease held steady in young women. Therefore, because they found an increase in advanced disease, thereshould be an overall increase in young women, she said.

However, the researchers "did not show/discuss data on overall rates of breast cancer in young women," Dr. Partridge wrote in an email. This omission, combined with the fact that the study findings might be in conflict with findings from other studies using SEER data, "leads me to wonder about the article," she said.

Check out the rest of the article and others: 

From Liz Szabo, USA Today:  "Deadly Breast Cancers are Rising in Young Women"

From the NYTimes:   "Study Finds More Breast Cancer at Young Age"

From NPR:  "Younger Women Have Rising Rate of Advanced Breast Cancer Study Says" 

suitcase stowaway

I am in Dallas (or somewhere on the edge of Dallas with only highway and hotels as far as the eye can see. The hotel claims to have seven acres of "park" with walking trails that I have yet to find or check out. Given that the restaurant with the "open air ambiance" is actually in a roped off area of an indoor courtyard and the spa and gym are in a separate building and charge a membership fee, I am prepared to be disappointed). This hotel is huge.

Please note the little friend that I found when I opened my suitcase. He's half of a pair of "sweater monsters" that were given to me by a dear friend. I think D. decided that I might be lonely on my trip. How thoughtful was that?

I am off to find coffee and breakfast. I've been up since 6.

help keep the treatments coming

An open letter to everyone who reads this blog:

Did you know that, in Ontario, where I live, public health care pays for drugs administered in the hospital but not (most of the time) for those that are administered orally or at home? I've been extremely fortunate that most of my drugs were covered by OHIP and those few that weren't (mostly for mitigating side effects) were covered by my private insurance.

My friend Sue hasn't been that lucky. The chemotherapy drugs she needs for her lymphoma are best administered at home. As Sue points out, this is less expensive (the overhead costs are low and the possibility of her catching something that would land her in hospital is much lower) but she has been forced to pay for this life-saving treatment herself.

Sue is, without exaggeration, one of the kindest most generous people I have ever known. For many years (I first met her in 1996), she worked in a local pet supply place, where she provided advice and support to countless people and their pets. She seemed to remember every person and animal she met, whether on the street, in the dog park or at the store. She has personally rescued more than 500 dogs but knows how to help without passing judgement. I've never met anyone like her.

Not long ago, the store she worked for was sold to a chain and the new owners decided to lay off the senior staff, in favour of less-experienced minimum wages workers. On Sue's last day, hundreds streamed through to deliver presents, wish her well and give her hugs. She is a very loved part of our community.

When Sue was diagnosed with cancer, she was still without the benefits she lost when she was laid off. There are programs that help with the costs of drugs but they required that she must first drain her bank account of the money she'd received as severance pay and an inheritance from her mother, who passed away recently. So far, she has spent $50,000 of her own money.

She will soon have burned through all her savings and her inheritance. She will qualify for provincial support but will not have money to pay her rent and continue treatment during the waiting period. Will you help us close that gap? An online fundraiser has been set up to "keep the cancer treatments coming." Even if you can't help with a donation, please spread the word. I'm sure that we can reach the fundraising goal of $5000.00.

Sue's story could have been mine. This could happen to someone you know and love. We need to change this arbitrary line drawn by OHIP. But in the short term, let's help Sue, who has given so much help to so many people.

Photo courtesy Sue Breen.

ambiguous ambivalent

I had abdominal and thoracic CT scans a couple of weeks ago. For the first time since July 2007, I was not simply told that all is clear.

But I wasn't given bad news either.

I was told over the phone that some of my lymph nodes look "suspicious" but as my oncologist conveyed via his nurse, "that could be anything."

I was just recovering from a bad cold when I was tested, so that could have inflamed by lymph nodes. The only thing to do right now is wait, go in to see my oncologist on October 10th and then - I don't know. Do another scan and see if there is any change?

I've been told not to worry, so I'm working on that and on patience.

Meanwhile, I have a brain MRI scheduled for next week. This is purely routine, as herceptin does not cross the brain blood barrier. I have been fretting about it because I did not enjoy my last one - it's so unbelievably LOUD! I'm bringing company, extra ear plugs and lorazepam.

I'll have the results for that on October 10th as well.

So I'll be sitting tight, keeping busy and focusing on the things over which I have some control.

Anyone want to sit and knit somewhere or come help me organize my house?

"Worry has an anxious and unfocused quality. It skitters subject to subject, fixating first on one thing, then on another. Like a noisy vaccuum cleaner, it's chief function is to distract us from what we are already afraid of." - Julia Cameron, Walking in this World.

random observations

observation #1: I am getting dumber and my kids are getting smarter.

My youngest son is undergoing some tests with a psychologist as part of an educational assessment. After his session, the psychologist showed us some of the non-verbal test questions, which involved pattern recognition. D. picked out the illustrations that fit the sequence in split seconds. I asked if he had seen these particular questions before. He hadn't. He's just quick and very, very bright.

The thing is that he answered these questions much more quickly than I could have, selecting the right answer while I was still puzzling it out.

observation #2: I derive almost as much satisfaction from making lists as I do getting things done.

I am going away tomorrow morning (I got a scholarship to attend the Annual Conference for Young Women Affected By Breast Cancer, in Dallas) for a few days. I spent a good part of the morning making a list of everything I need to get done. I love lists. Having several (what to bring in my carry on, what to pack and what I need to do before I go) has made me feel much almost as though my work is done.

observation #3: I am very anxious about attending a conference where I will know no one.

The truth is that I would rather speak in front of 1000 people than meet 100 people one at a time. The words "networking opportunity" scare me. I have been reminding myself that I need to have an open and friendly demeanor and that it's OK to bail and go to my room when it all gets to be too much.

observation #4: Having worked in communications does not make it easier to promote my own work.

I would rather sell a message or promote someone else then sell myself. I have had the same business cards (lovely ones that my older son made for me) for a year and have yet to make much of a dent in them. I am bringing flyers advertising my book, though and will at least put them on tables, even if I don't have the courage to talk about it.

observation #5: I get very excited at having time to myself and tend to over-estimate what I will have the time to do.

The weather will be warm in Dallas. And my hotel (we got great discounted conference rates) is far from anything touristy to do. It does have nice grounds, a nice gym, several pools and an outdoor restaurant, so I plan to pretend that I am at the spa in the hours before the conference starts. I am bringing knitting, books and workout gear. Lots of all of it.

observation #6: Homeland Security is going to have a field day with my suitcase.

Circular knitting needles (joined by flexible cables), pins (for blocking or shaping finished scarves on my extra bed) and a bottle of hair mousse. I might as well paste a sign on my suitcase that says "suspicious contents!". The Yarn Harlot says that her suitcase is opened and checked every time she goes to the States. Mine was only opened the one time I packed knitting in my suitcase. I think knitting needles look suspicious on x-rays.

Off to make some tick marks in my to-do list now.

I may blog while I'm away, if I can find free wireless in the hotel lobby. Can someone tell me why the cheap chains give you free wireless but the fancy hotels charge extortionate rates for slow access?

Cancer and My Marriage

Note: Ask any survivor about side-effects or working with an oncologist and you’ll receive a notebook’s worth of helpful information. Ditto for managing cancer on the job or with children. But ask them about their relationship and you’re apt to hear variations on this theme, “He never blinked,” or “He really showed me how strong a man he truly is.” In other words, you’re not apt to hear what it’s truly like for some women. While we celebrate relationships where love’s better nature rules, it’s also time to honestly share the kind of stress cancer and its associated treatment brings to many two-income families where jobs, children, carpools and chemotherapy all need to be balanced in the course of a day. I was asked by a woman whom I admire to publish this essay here. It is my honor to do so.

 --- Jody Schoger

I never thought I would write an anonymous blog post.

Nonetheless, here I am, writing about cancer’s impact on my marriage after my late-night Google searches only yielded stories of marital triumph, replete with images of the devoted spouse proffering a tender kiss on his partner’s bald head. My hope is that the next despondent, lonely cancer patient might feel a little less crazy reading my story

I love my husband and do not want to be disloyal to him. I will remain strategically vague on some details and alter others to shield my family’s privacy. We have had the kind of marriage people say they can bet on. Single friends confess that they hope to find a partnership like ours. Obviously, things are always messier on the inside, but we undoubtedly share a strong love for and commitment to one another.

When I was diagnosed we’d been married with children for more than a decade. Like every couple we had our strengths and weaknesses. We were strong in the communication department, which allowed us to navigate the transitions of parenthood, moves and job changes.

Even with these strengths at our disposal, nothing challenged our relationship like my cancer diagnosis. I was in treatment for almost a year, with follow-up drugs and surgeries that impacted my quality of life for a prolonged long period of time, far longer than either one of us expected. I had chemo, a mastectomy and radiation which was then followed by a series of reconstructive surgeries. All the while, I held down a job, tried to help raise my children and hold things together.

Our marital glue was communication, adventure, and sex. Chemobrain wiped out my ability to communicate, especially about emotional issues. Strong emotions made me queasy, leading me to shut down even more. Also, my forgetfulness was a constant source of frustration to my husband, who came to treat me like one of the children, nagging and cajoling me.

The painful truth was that he wasn’t totally off-base in doing this. He had to keep the household together, and I was falling apart. As for adventure, it is hard to be spontaneous when you are immunocompromised, nauseated and unprepared for the undertow of fatigue that can pull you in and wipe you out. And of course, our sex life was horribly disrupted. Given the length of our relationship and the presence of children, we were surprisingly regular in our sexual activity. Chemo brought on chemical menopause; the mastectomy took away a critical erogenous zone and left me with profound loss of body confidence. Radiation, for me, was painful and a complete energy drain. All this together is the opposite of sexy.

I have read accounts of the sympathetic, supportive husbands who wait patiently for a partner to heal. My husband was like this probably two-thirds of the time. But he is only human. All the things I couldn’t do he did ... from driving carpools, cleaning the house, doing laundry, communicating with teachers, mediating sibling spats, and tween-age drama. He was holding down his own job, and could only watch as the little energy I had energy my went to my work. By the time I arrived home I was completely spent and totally unavailable emotionally or sexually.

Plus my bitterness at the length of treatment grew as the months dragged on. If it had been a month or two, I think we could have endured it and come out relatively unscathed. But this has gone on for years. Not only was this ordeal loosening our glue, but the friction points of marriage – the ways we see things so differently –– began to push us further apart. Because of my limited energy and concentration, we couldn’t have one of our major realignment conversations that used to bring us back to a place of mutual understanding and respect about our differences. Add to this mix the financial strain of decreased income and increased expenses. A chunk of my income comes from freelance work, which was now off the table because of my illness. Even though we have good insurance, I was stunned at how quickly medication co-pays and deductibles added up to big numbers. Money is the source of conflict even in stable situations and we began to argue about purchases that never were an issue before.

Eventually we hit several crisis points. There were the periodic pity parties my husband had about his utter deprivation, emotionally, physically and sexually. It was a stretch for me to comfort him, since he was basically right. Guys really don’t reach out to other men when they are vulnerable. Where I am sure my girlfriends would have rallied to my side had our roles been reversed, he was left basically alone. None of our extended family members live near us. There wasn’t a grandparent, an aunt or even a cousin to give him a break for any length of time.  Nor did it help our bond that he was petrified at the idea of actually losing me. At his lowest moments, he would vacillate between his frustration with my helplessness and the terror of my possible death. He told me through tears one day, "I can't stand that the one person I want to talk about all this with is you, and you are really not really able to talk."

Another crisis came after my treatment was over and I started to regain my cognitive and physical energy. It would no longer do for him to treat me like his other child. But it takes more than a simply saying, “Mom’s back in business.” The children had learned that Dad was the Real Parent in the house, an idea reinforced by the ways he would second-guess my authority as a mother. It was difficult to stand up to this. How do you stake a claim to your authority when you are not the same in memory, strength, or energy? I confronted him about this. To his great credit, he has worked with me to rebalance our parenting team, with the understanding that I am still not 100 percent. Regaining authentic balance in our partnership remains an ongoing challenge.

Our sex life is on the mend but is still a source of strife. I have not figured out how to feel comfortable naked, with all the scars riddling my torso and the false breast that feels numb and dead. My energy remains unreliable. At night, once the dishes are washed and the children tucked in, I often want to crawl in the bed to sleep. We are trying to be more deliberate about carving out time for ourselves and our relationship, but it is so hard. So, so hard.

There is a lot of talk in the cancer world about survivorship plans for patients. What I really need is a survivorship plan for my marriage. In my support group, I see a lot of people getting divorced after the crisis of treatment subsides. These wounds cut deep, touching our greatest insecurities. Luckily, I do know a handful of survivors whose marriages did recover. I just wish I had more of a roadmap for how to steer my marriage toward success and away from the potential disaster.

 #    #    #

i'm fine.

Better than fine, actually. And I have lots of posts stewing in my head (that sounds kind of gross).

But I've had to spend the last few days running around doing all the things I couldn't get to when I wasn't feeling well.

Regularly scheduled (or at least semi-regularly scheduled) programming will resuming shortly.

reluctantly gluten free

Last fall, I got tired of feeling crummy all the time. I'm sure the fatigue and the gastrointestinal issues were exacerbated by the round of antibiotics I'd had to go on after my surgery but I just wasn't getting better. I needed to give myself a chance to heal.

In the spring, a cousin and her spouse had been on the Brown Rice Diet. Laura also happens to be a naturopathic doctor, so I had asked her about it at the time and got her to send me the info. It's not a diet in the weight loss sense of the word but more of an elimination of all potential allergens. For three weeks, the only grain I ate was brown rice. I ate chicken, fish and a bit of lamb but no other red meat and no shellfish. Alcohol, dairy, sugar and all processed food were also verboten - but I could eat as much of anything as I wanted.

At the end of the first week, I was ready to chew off a limb. Despite consuming lots of food, I was hungry and irritable. I almost gave up. Instead, I increased my protein intake and two days later I felt flat out amazing. I had tons of energy, no cravings at all (I sat in front of a table full of wine, chocolate and cheese at book club and sipped sparkling water, not minding at all). I lost 10lbs, which I'm told was water weight, as I let go of sugar induced inflammation.

At the end of three weeks, I reintroduced grains, like quinoa that don't contain gluten. I was fine.

I introduced bread and got sick. My son was also ill, so I decided it might be a coincidence, and that I should take gluten out of my diet and reintroduce it later.

I had no reaction when I reintroduced yogurt. Or cheese. I re-introduced gluten and got sick again.

Over the holidays (Chanukah, Christmas, New Year's...) I ate pretty much whatever I wanted. I felt sluggish, bloated and irritable and by the new year, was ready to eliminate gluten again.

After a couple of weeks, I didn't feel fantastic but I didn't feel terrible. Mostly, I was irritated that I couldn't eat gluten. I missed Tim's home-made bread. I missed the chocolate cookies from the Wild Oat. I missed beer. I started to wonder if there was a point to all the deprivation.

Then came Tim's birthday and I decided to make Too Much Chocolate Cake. And, after three weeks without gluten, I had a giant slice. Then I had another one the next day. And the day after that, I was  a mess. My distress was not so much gastrointestinal as emotional. I was irritable angry furious. I was depressed. I was in despair. It was awful. And then, suddenly, it was over. I felt fine again.

So the gluten is gone for good (Tim says that the scientist in him would love to give me a slice of chocolate cake, just to see what happens but, out of self-preservation, he thinks that would be a bad idea).

I'm still figuring out what it means to be gluten free. Sometimes, I'm surprised by how easy it is. Other times, I feel frustrated that it feels complicated.

I don't feel amazing.. To do that, I guess I'd have to cut out the alcohol, sugar and processed stuff. Maybe that's next but for now, I'll just try and keep it to a minimum.

just skip the anesthesia. he's tough.

My oldest son had his wisdom teeth out today. While I worried and waited, I got to thinking about managing his pain and remembering the aftermath of my brain surgery two years ago. I made a bunch of notes for a blog post about this and then thought to do a search of this blog. It turns out I wrote a post on exactly this subject almost a year ago. 

Sigh.

Can I blame these lapses in memory on the brain surgery or just on aging? Or stress?

My son's procedure went well and he is now very stoned and asleep in his room. To pay for all this we had to put 1800.00 on our credit card.

This is mind-boggling to me. Why is this not covered by public health care?I know the historical reason why (the first wave of Medicare was supposed to be followed by dental care and a Pharmacare program. That never happened.) but doesn't it cost the province much more to hospitalize someone whose wisdom teeth have become impacted?

Dental care is a real "don't get me started." Ask anyone who knows me.

Fortunately, my private insurance will cover most of the cost. However, it only covers part of the cost of anesthesia. What would have happened if we had been unwilling to pay the difference? Our 16 year old son would only have been partially anesthetized while they yanked out his wisdom teeth? 

This mystifies me.

And it's only a small taste of what we'd experience if we didn't have socialized medicine.

Gratuitous photo of my handsome son, with all wisdom teeth still in his mouth

women with real influence

My youngest son came to see me in the kitchen this morning, while I was making school lunches (By the way, has there ever been a more thankless task in the history of parenting? I don't thinks so).

Me: "Your face is so clean! Great job!"

D.: "I washed my face!" (He shows me how he did it, miming vigorous rubbing.)

Me: "That's great!"

D.: "And I brushed my teeth. And I even flossed." (He mimes brushing and flossing.)

Me (impressed): "That is amazing. You are awesome."

D.: "I did it because at day care we are learning about the importance of good hygiene."

They have good teachers at the day care. And, apparently, their words carry more weight than mine do. Maybe I could ask them to talk about "the importance of being polite to his parents" or "the importance of cleaning up his toys."

Butterfly in the sky....

The way the words hit you when you hear "I'm sorry, it's cancer" is hard, the emotions that come after- hard, the hurt in your families face- hard, the surgeries/procedures/treatment- all hard. But the aftermath that cancer leaves is devastating. The change mentally is draining. I have major survivor guilt. How come I got out alive but Cindi was put to rest this week, it doesn't seem right. I am no better than any other warrior battling cancer, yet here I sit. This week I went out for the first time by myself, just to Target, but I was so excited. It was so strange, I was a nervous wreck. I didn't want to see anyone, I didn't even want to shop! wtf I am an extrovert, I will really be pissed if cancer changed me into an introvert!
Sex, well that is a joke right now. I know you are reading this saying TMI but the reality is that this is a common issue with cancer survivors. I will not go into full detail lets just say its unchartered water that needs boating lessons.....
The truth is all that is easy,  the physical change can leave you filled with hate. I have days when I can not stand this body. It makes me sick. I have gained weight, if one more person tells me they are doing TRX I'm gonna drop kick them. I want to be that badass work out bitch I was 6 months ago, damn Gina remember how much I was squatting?? I feel so incredibly weak it makes me feel deflated. I know it will take time but this has got to stop.
 The scars are just, well, they are there. Sometimes I'm all badass and hardcore like "ya my scars show I kicked cancers ass, I rock!". Then other days I just want them gone. I don't want to feel the scar tissue build up, the way my body keloids, the way my breasts are inanimate objects that mean NOTHING now. I want to actually have feeling in my chest!
This isn't a whine or a "woe is me cry", it is the truth. How I deal is by having events that raise money and awareness to stupid dumb breast cancer, and cancer in general. I want to make cancer awareness  a loud yell,  not a whisper. I want it heard, seen, understood, treated and CURED! The only way for this to happen is to keep talking about it. Just cause you are told are cancer free or your chemo ends or you are 3 years out of radiation doesn't mean you just go on with life. Cancer changes you to the core: physically, mentally, emotionally!

 This is my favorite quote and why on Tuesday I start the tattooing of my chest with a butterfly. No no no I didn't get cancer just to get more ink, it is just a cancer perk!

sunday was a good day (by lucy, as told to laurie)

On Sunday, two of my humans and I went to a very special birthday party.

There was cake.


The birthday girl turned 17.


She looked very pretty.


A good time was had by young and old (I thought S. was a little too cuddly with that puppy).


It was fun to be at a party.

It was nice to have a nap, too.

k. and the colossal colon

On Friday evening, my friend K. will be arriving from the Netherlands for a long-anticipated visit. I haven't seen her since she flew to London to hook up with S. and me in the spring of 2008. I can hardly wait! Two more sleeps!

K. is a gastroenterologist and is coming to Canada for a conference in Toronto. She's making a special trip to Ottawa to hang out with my family and me for the week end.

The last time K. came to this part of Canada was in 2005, when she attended a conference in Montreal. I took the train to meet her, and we went out to dinner and had a sleepover. At that point, we hadn't seen each other in almost twenty years and I was worried that we wouldn't recognize each other. That turned out to not to be a problem, and I remember how my heart lifted when I saw her.

I also remember the Colossal Colon that was set up in the atrium of the conference centre. The thing was huge colossal. I was awestruck. And I seem to remember that no one else was giving it a second glance.

I was reminded of this reunion and the big colossal colon the other day, when someone on Facebook linked to an article by Miami Herald columnist and humourist Dave Barry:

"What happened was, a giant 40-foot replica of a human colon came to Miami Beach. Really. It's an educational exhibit called the Colossal Colon, and it was on a nationwide tour to promote awareness of colo-rectal cancer. The idea is, you crawl through the Colossal Colon, and you encounter various educational items in there, such as polyps, cancer and hemorrhoids the size of regulation volleyballs, and you go, ''Whoa, I better find out if I contain any of these things,'' and you get a colonoscopy.

If you are as a professional humor writer, and there is a giant colon within a 200-mile radius, you are legally obligated to go see it. So I went to Miami Beach and crawled through the Colossal Colon. I wrote a column about it, making tasteless colon jokes. But I also urged everyone to get a colonoscopy. I even, when I emerged from the Colossal Colon, signed a pledge stating that I would get one.

But I didn't get one. I was a fraud, a hypocrite, a liar. I was practically a member of Congress."

Barry goes on to tell how some jarring news about his brother moved him to finally have the colonoscopy. And other than the prep, it was no big deal.

It's called, "A Journey Into My Colon -- And Yours" and it made me laugh out loud in several places. Go read it.

And, if you're over 50, make an appointment for a colonoscopy.

housekeeping

I'm going to be offline all this week, so I schedule this post to fill you in on a couple of things.

You can now subscribe to this blog. Quite a few people have asked me about it and it actually just took a few minutes to set up. If you want to get my posts via email, look over at the right hand column on this page. Just under the "about me" section  is a little box in which you can enter your email address. If you do that, you'll be notified every time I write a new post. If you go that route, let me know if it works for you.

I recently found out that Not Done Yet is available as an ebook from a few different sources.

Amazon Kindle 
US
Canada
UK

Kobo

Nook

I also have a few copies in my attic, if you like old-fashioned paper. I bought them at the author's discount, which I'd be happy to pass along to you. I'll even sign your copy and write a personal message. The cost of a real honest-to-goodness paper book is $20.00, plus whatever it costs me to ship it to you. That's a break even deal for me but I'd like to see the last few copies get out into the world. Click on the image on the top, right hand side of this page to send me an email or leave me a message in the comments.

I'll be back next week!

it's all about fit

Yesterday, I met with a cancer coach at the survivorship centre. 

My stated goal was to improve my health and prognosis by eating well and exercising more consistently. I shouldn't have been surprised that I was matched with a nutritionist but I groaned inwardly when my coach filled me in on her background.

Two years ago, I met with a nutritionist weekly for nearly a year and I learned a few things but mostly I paid a lot of money to feel bad about myself. Someone else might have really liked the woman I worked with but I found her judgmental (for example, not only did she not drink alcohol, she could not understand anyone who did, even a little) and extreme (her idea of a treat was to have one square of very dark chocolate, once a week). Under her smug judgmental gaze, I felt like a complete failure. 

The implicit message was that if you can't do it all, you might as well not try (that may not have been her message but it was how I felt). I stopped seeing her, feeling that I'd accomplished very little.

The cancer coach I met with yesterday was very moderate in her approach. She actually said, "everything in moderation, including moderation."

I think I love her.

After she'd told me about the centre and the programs available to me, we talked about food and eating and self-care for more than an hour. I left with information and a feeling happy and good about myself.

I see her again in two weeks.

Social Media: Bedside Perspective

Three weeks ago today Steve underwent surgery at MD Anderson for a wide excision and immediate construction of a recurrent melanoma on his lower left ear. After the cancer was removed by Dr. Ross, Dr. Kronowitz cut and secured a skin flap that in essence connects the ear to his neck.  Now we’re waiting for two things 1) assuring that the flap remains healthy and 2) for a secure blood supply to establish from the ear to the flap, and not the other way around.  Dr. Kronowitz then removed cartilage from his good ear so it won’t look like (in our terms) a “skin blob.”  When I was able to join Steve in the recovery his entire head was bandaged but he was sitting up, blinking ointment from his eyes and eating a graham cracker.  He was calm, alert (sorta) completely without pain or nausea.  Beautifully done, I thought.

Ear Reconstruct w/flap secured.

Every hospital experience is different.  

        For Steve’s recent surgery it seemed as though we'd scored a home-run. Everything went better than expected, from the moment we hit the out-patient surgical department at MD Anderson’s Mays Clinic at 6:30 am on January 31 to the moment we left some 24 hours later. After a boatload of collective cancers I felt like the sun landed on us.

        The morning we went in was humid and warm; the day we returned home a winter storm had muscled its way throught the warm Gulf air and dropped the temperature thirty degrees. What a difference a day makes.

        What you quickly recognize as a survivor is how much surgery and hospital care spins on attentiveness and intricate detail – someone’s deft skill in starting an IV, a surgeon’s on-the-spot innovation, the tech who follows each aspect of his or her protocol right down to dotting every “I” and “t” that assures that needed medicine, supplies, or test results are in place when needed.  Many of the factors contributing to a “good outcome” aren’t immediately apparent to us as survivors or co-survivors. We know if we have to wait, if the receptionist is polite, if the physician’s nurse is someone we enjoy talking with, or if the PA cops an attitude. Experience and knowledge fill in the blanks.

        It had been eight years since either one of us has had major surgery.  Here’s what was different and how the advent of social media platforms changed my perspective.

        1) Innovation of the Obvious: Tag Team Pre-Op

        Never have I seen so many people checking, double-checking and tag-teaming each other to facilitate the pre-op process, from fellows and PA’s for both surgeons, people from anesthesiology, a tech whose sole purpose seemed to be monitoring his awesome blood pressure, to the others who poked their heads around the curtain and smiled hello.  It was such a revolving door there was no time to be nervous. This was also the first time I could clearly see how the system worked.  Each player was there to confirm the obvious: Steve’s procedure and his or her role in it, period.  

        Two things really struck me. The first was the anesthetist who came to start the IV.  First she warmed his arm with a blanket, chatting and rat-a-tat tapping his veins. What she learned in a short time is Steve’s own tale of “IV’s that failed.”  There isn’t a survivor on the planet without a collection of these little gems.  It even took me a moment to realize how much she listened, because she stepped out quickly and returned with the anesthesiologist.  He, in turn, talked  with Steve while she had the IV in on the next heartbeat.  Later, she tells me that after she'd heard what had happened before she'd already decided to only stick him once. She'd asked the anesthesiologist to step in, just in case.  How is that for patient-centered care?  Gold star.

        The other revelation was the beauty of the obvious.  When a wonderful nurse with a commanding presence, stepped in and said gently, in a matter-of fact way, "there are going to be a lot of people coming in here and asking you the same question, so bear with us” it was an Einstein moment.  Healthcare professionals should never forget how beautiful simple statements can be. Of course. A lot of people are asking me the obvious to make sure I get the best possible care.  A team that's all on the same page is the team I want working on my family.

          
           2) Out-Patient/23-Hour Admission:  Room Without a View

My 23-hour vantage point.

           Our experience as 23-hour admissions in l998 and then in 2003 were abysmal. I prepared for this one.  I packed a change of clothes to keep me comfortable and enough reading material to last me through the end of the year. I stuffed in my pillow, slippers and reading light.
            I geared up mentally. Fortunately, I need not have worried. Unlike the last time, all 23-hour admissions are now located in the same area where out patients recover from their surgery. This means the nurse to patient ratio (there were only six rooms) was absolutely stellar. Had anything been wrong -- and there wasn't - the nurses were twenty feet away, working at their computers. 
     
          3) EMR: Don't Abandon Hope, Hit Enter

          From our perspective there were glimmers of the EMR, or electronic medical record.  Most of these were apparent when something didn't work, for example, when a nurse in one department didn't record (hit enter?) the very same data the nurse in the next department wanted to know. Information like prior surgical history -- especially at the same facility - should be duck soup, wouldn't you think?

          What I noticed:  all data from the recovery room and pre-op area went directly into the computer, even tho staff in pre-op had print-outs for their own notes.  This makes sense.  In surgery, where the consequences of mistakes can be dire, everything has to be documented to protect the hospital.  And the patient.  In this arena: attorneys rule, and will continue to rule, maybe even facilitating greater and more wide-spread EMR adoption? Who knows.

           Simple things, that make the patient's life easier but have no impact on bottom line or direct quality control?  Not the same attentiveness. Different departments within the same same facility schedule and post follow-up appointments (to the patient portal) at really different rates; from the day the order is given by the physician to up to four days later.  You can call all you want to.  It still takes a person to pick up messages and respond.   

         4) How did social media impact this experience?
          In an immediate way, it didn't at all, even though it was everywhere.  

Nothing regarding the surgery, physicians or facility were influenced by social media but how I handled it certainly was, from sending messages via DM on Twitter to posting a photo of Steve's nurses on Facebook (they loved being asked for a photo, BTW).   Support for both of us rolled in
from both platforms.  Priceless.  


Steve's still prefers his own social media platform: the hospital message board.  Literally.  He filled in his own within a few hours of being transferred to his room.


Thanks for your continued support,
Jody 

Today as I was writing this the dialog on #hcsm, #EMR and health apps continued at a non-stop rate on Twitter from the irrepresible @HealthIsSocial "The Killer Healthcare App" to today's post from @KevinMD   "How EMRs are failing nurses"