Chemo 2 of 6 done and Excellent News!!!

Sorry I have not blogged in a long while.

I have excellent news.

Paul, my oncologist, phoned and said ``I have some good news and wanted to call you myself and tell you that the biopsy on the node outside your lung was negative for cancer. Also, the MRI on your bones was also negative.``

I am over the moon, to say the least, about the news. Ellen and Bobbi did two happy dances in front of Joanna, they said. Ellen and Joanna have Bobo for three weeks at their cottage in the Muskokas. Although I miss Bobo so much and am constantly telling Dave this, he reminds me that Bobbi is having the time of her life with Joanna’s mom’s wee dog, Molly, and her moms. I can’t wait to see her again though.

Speaking of Joanna and Ellen, they are a large part of my other good news. Ellen and Joanna made a donation to the Nora Cancer Fund. (just named it now, lol) They made me a gift of cash so I can (a) afford the good anti-nausea drug which I used last chemo (my second of six) and which was amazing. Totally zapped the nausea; (b) buy a falsie...a prosthesis with two bras to hold it in place...which was awesome; and (c) pay for other expenses which has put my mind in a much better place.

I can’t thank them enough. They are angels of mercy. They also sent me via Gerry Rogers, the latter’s award-winning film, My Left Breast,which is amazing and life-affirming. Because of it, I have decided to finally join a breast cancer support group, which I had been avoiding til I was ready. I am ready now.

The reason I wasn’t joining this group was that I tend to be a tad co-dependent and when hearing others having a rough time, I tend to diminish my own self-pitying situation in favour of sympathy for another’s. This only temporarily puts my raw feelings aside and then they come back worse later, accompanied by self-dislike for not standing by myself in the first place, not focussing on finding answers to mine.

I was so raw, so frozen, so traumatized since the beginning of May when this whole thing started, that it is only now, with the good news, with the knowledge that I am in the hands of two excellent oncologists, Dr. Caudreliere, the radiation guy, and especially Paul Wheatley Price, who must be the kindest, nicest, most brilliant oncologist in the whole world, that I am starting to thaw.

I haven’t been in tears since then. I feel I am over it. Bored by cancer. More interested in all the happiness around me. What was it Carly Simon sang ? I haven’t got time for the pain.

Speaking of Paul, I had an appointment yesterday with him. As you might recall, I finished round two of six chemos two weeks ago. I have to see him before each of the chemo rounds.

I told him I really didn’t want a port installed under my skin prior to the next round, which the nurses have set up to have installed in me, early next week.

I find it scary and weird to have a button and three inch tube just under the skin of my chest. It is too Bionic Woman or something. I would feel like Arnie in Terminator Two, with a machine under my skin.

It is a port in an artery into which tubes of chemo can be pumped, bypassing my veins. Nurses will attach a Gripper atop the hole in my chest and from that they can take the blood required prior to each chemo and they can pour the chemo in there too.

Because I have to take Herceptin, the liquid that reduces the spread of my particular kind of cancer, HER2, by thirty percent, which I will get every three weeks, I will have to have this port under my skin for a year and two months.

Paul was so great, I had to pinch myself. Ever have a doctor who shakes your hand at the beginning and end of each meeting? Who is genuinely warm and kind? I am so used to being told “no” by doctors (remember that I carry around a single ginormous boob on the left side because the surgeon wouldn’t remove it at the same time as my cancerous right breast) that I was amazed when Paul’s response was “well you do have rights, you know. You have the right to say no to the port, and just keep having chemo via the veins in your left arm.”

I told him the nurse I just saw before him told me that was not an option. His response? “Let’s get her in here and talk to her together.” So in she came and she said “I’m afraid that you don’t have an option. We are reduced to using the veins in only one arm in your case, Nora. Your right arm cannot take chemo nor the herceptin you will be receiving for a year after the chemo.”

Paul corrected her: “Well actually we are starting the herceptin at the same time as her third chemo, so it is only for a year that she will have injections every three weeks.”

The Nurse continued: “Well her right arm is off limits for chemo and for taking blood because she has no lymph nodes in it anymore, and there is a danger of permanent swelling there.” I didn’t know this. When giving blood prior to my last chemo the tech asked which arm i wanted it taken from, and I offered my lymphless one. I wasn’t going to disclose this now, however. (Codependent no more!!!)

Paul tried but it was futile. Nurse Chemo prevailed as I, ever the codependent, caved. Then she said “let me take you up to the chemo unit and we can see one on a person. It's really not obvious at all. People won't even see it."

After Paul and I finished (he told me my fatigue, which is really bad right now, was going to get much worse by round six; he also cheered me up by telling me that on Thursday, September First, I was going to be half way through the worst part of my journey....with chemo number three out of the way) I accompanied Nurse Chemo upstairs, and sure enough she introduced me to a poor, skinny, skinny, skinny woman, a patient who also had HER2 breast cancer.

The purpose of my accompanying Chemo Nurse up there was for me to ooh and aah that indeed it was almost imperceptible. Unfortunately, the reverse effect occurred. The Gripper atop her poor, wee, skinny chest was terrible looking! And God forgive me, but because the sweet young woman was so thin, the two or three inch tube under her skin was like a snake!

I was in shock. Chemo Nurse was saying the veins cannot take the destruction of chemo. Then she says something else. She says the chemo might spill if my veins break.

Ok. I may not like having the hole in my artery with a button on it, but hell, I don’t want that mess either!

Fear, gotta love how effective it is as an unfair tool in getting one’s way, huh? I mean, Paul, an oncologist, says I don’t have to, but Nurse Chemo just has to have her way: pulling out the ole fear trick really works. I will let you know how it works out as I still really really really do not want the port. Am completely against it. But then again I am such a codependent, fear-based baby at heart. Something tells me I will cave in.

Other good news. Ellen was just chosen by the country of Holland, her native land, where she and Joanna were legally married years before Canada made it legal, to help spend a hundred million dollars around the developing world on women’s rights. She and four other women were chosen by Holland to form a committee to spend this money. This is the most brilliant news of all. I am over the moon for Ellen, and for the women of the developing world who will receive the benefits.

Back to my good news at the top of this page.

Once you learn you will probably be dead within five years, then the guvnah gives you a reprieve of sorts, it gives you a whole lotta cognitive dissonance.

You know how in a movie, there is, 75 minutes into it, a really really bad event for the hero/heroine and everybody figures, wow, that is an impossible obstacle, I guess our hero will lose in the end? The triumph that will reverse that bad news cannot come till the end of the film. At the moment of triumph, the hero breaks down in happy sobs, or a big smile, etc., and totally accepts his/her good fortune, dancing happily into the sunset.

Well, when Paul told me the cancer had not spread, and that at this moment I am cancer free, I did smile, and was really happy too. In the past week or so, I have noticed that I feel so much better in general.

The Cancer Society, an amazing bunch of volunteers, have generously provided me with a free wig, and I took it to the wig hairdresser they recommended and got it trimmed to fit me. It looks great. I can’t keep it on for more than an hour or so these days, because it is hot and annoying, but I know that I will get used to it more and more, so i practise having it on and timing how long i can stand it.


When I got the wig trimmed to fit me, and showed up with my fake new boob at Christine and Michael's recently, Mike couldn't help remarking, about my flat-ironed looking, three shades of blond wig: "Nora, you look better now than before you got cancer!" Chris and I burst out laughing and Mike was like "Huh? What did I say?" I have learned from this wig that men really are as gullible to a flat iron and a bottle of peroxide as women always suspected them to be.

What is different about my taking in the good news, and that of a film hero, is that I find I just can’t totally trust the good news. For example, my wonderful old friend, Freya, who has been a good friend since Grade Nine, came to see me with her beautiful ten year old daughter and Freya’s partner, Zahra’s dad, Andrew.

Freya asked me an excellent question, which was, now that i am cancer free, why continue with the treatment? My reply was that I simply trust the stats. Paul gave me the stats you may recall: I have a 25% chance of being alive in five years if I don’t take the treatment, and if I do, then the stats become much better for me.

But i still had the same question as Freya and I asked another breast cancer friend, Danielle, about it. She reminded me of what I knew way back in June, which was that the machines that detect cancer cannot detect microscopic cancer cells. Perhaps one day a machine will be developed that will do this job, but at the moment, we are considered cancer-free if the current machines and processes like biopsies and MRI’s cannot find the cancer cells.

So you take the treatments in case you have really, really, tiny cancer cells in you that are undetectable. A cancer cell takes 90 days to double in size, but in my case, as Paul told me a month ago, “with HER2 breast cancer, the doubling in size is much faster.”

It was so great to see Freya I can’t express it. When you are with people who have known you all your life, basically, there is an especial openness and love that is so wonderful. It makes one sad that we live in an age where people emigrate and move to other cities when they reach maturity.

Imagine how wonderful and comforting it would be if our friends from childhood and teen years stayed in the same city as you all your life. I imagine the majority of people centuries ago, before mass immigrations, had these really tranquil, joyful old ages, where they could embrace their friends during tough times.

Another great visit was from Trish and Mike. Trish’s mom had HER2 breast cancer, as did her sister. Trish had thyroid cancer, as did my sister, Rosemary.

According to Trish, there is a gene that links the two cancers. I find it fascinating that both of our families experienced this. Years ago, when my mom had breast cancer, at the same age mine started, they didn’t know about HER2 breast cancer at all. I will bet if I get a genetic test, it would say I have that gene....the one responsible for both thyroid and breast cancer. Trish did the research and says that there is a high likelihood of having a daughter with HER2 breast cancer and another daughter with thyroid cancer if the mother has HER2 breast cancer. Another reason I am grateful I did not reproduce.

Jocelyne, a very good friend, took me to the last chemo as Christine had to accompany our Prime Minister on a five day whirlwind trip through Latin America. Chris, my best friend, has blessedly let me know that she will be with me through this journey in every step of the way. I am not alone. I am very blessed. Chris was very upset she couldn’t accompany me, and offered Mike as a substitute.

Although I am so very lucky to have wonderful Mike in my life, I just couldn’t stop giggling at the mental sight of him sitting next to me while I was having chemo, while all the other miserable, bald people lay on their beds or sat in stuffed chairs having the same.

Jocelyne, when I asked her, immediately said yes, and I was so very lucky to have her as a devoted friend. She picked me up and took me there and we went up to the fourth floor of the Irving Greenberg Cancer Centre at the Queensway Carleton. The hospital is so nice and modern; the parking lot half full always, and it is a state of the art place to have chemo. We had a really relaxed time, and I observed that after the first one, it was so much easier. Nothin' to fear but fear itself.

Whenever I go to the Cancer Centres at the General Hospital, the Civic, or the Queensway Carleton, I am struck by the sheer number of scarfwearing bald women with one breast walking around. I feel like I am in that Donald Sutherland remake of Invasion of the Body Snatchers or Margaret Atwood’s A Handmaid’s Tale.

Something feels science fiction-ish about the prevalence...the one in 8 women with breast cancer. I feel like stopping in front of them, pointing a straight arm at them, mouth wide open in a scream like Donald Sutherland’s: “Ah ah ah ah!”

With the new anti-nausea drug, my post-chemo first week was much better. Basically, I slept through as much of it as I possibly could. Inside your mouth, it tastes like someone has coated your skin with carbon dioxide gel. You eat even when not hungry, to get rid of the sickening industrial-waste taste. You feel really weak and tired. It is important to wake yourself up to take the four anti-nausea drugs and two anti-constipation drugs. I let it slide a couple of times and paid for it. About the last thing you want in your mouth is more chemical flavours, as all pills taste like chemo.

Some people can’t eat during chemo and lose a ton of weight. I envy them. I am one of the large group of people who gain weight on chemo as they find food takes away the gross mouth problem. Indeed my existing breast has inflated to Dolly Parton size. A real treat.

Same as last time, you pee out the red epi chemo, called The Red Devil, for three days. During that time, your pee is red, then it gets more normal. The smells you have coming out of your skin are not pleasant.

After my eight days of “being under” I felt like going to a perfume counter and Christine and I had a really great time at Holt Renfrew one day, trying on hats, scarves, and smelling every new perfume they had. We even picked up a male perfume for Mike, as he is one of those guys who can really appreciate that kind of thing. Now I have a dozen free samples of lovely fruits, florals, woodsy scents. MMMMmmmm. Am gonna keep em by my bed for the first week after Thursday’s chemo.

Re: the nasty neighbours out back who gave us a shitty time. (I blogged you about it.) We heard nothing since and did as the police advised: put up a piece of fencing where they were photographing us from. The bylaw officer did come by, however. She, the bylaw officer, explained that they have to come by even if they know that by now, it is a case of neighbour derangement, as opposed to a real case. She apologized, and saw, that, as usual, there was the legal amount of dogs present, and that there is no kennel here whatsoever. A very nice woman, who has to patiently tolerate these spurious calls. It costs the city $150 per call and this is just money wasted if the person calling is deranged, as my neighbour is. No filter is built into the system to check first if the caller is deranged. Same thing in all provinces, and in England too.

Poor Jack Layton. I just couldn’t believe it. Last fall on the eve of the Federal Election, he looked great on television, debating. What an awful thing is cancer. We still don’t know what kind of cancer he had the second time. It reminded me that Farrah Fawcett was a very brave woman to tell the world she had anal cancer. Someone else told me that in the fifties breast cancer was a secret, for people were too embarrassed to even mention the word, breast. Thank God we live in better times. But I do respect someone’s desire not to publicly disclose the name of the body part with cancer.

Oh! I nearly forgot to tell you the big news about being bald! Last time I blogged I was going to get my head shaved as my hair was coming out in clumps. It was a long traumatic week when the hair was coming out all over the place. Finally, because the wig fitter/Cancer Society volunteer was going to need a bald head for the fitting, I asked Dave to shave my head.

He went onto utube to find out how to do it. He apparently phoned Suzanne Harding next door and asked her to come over as he “needed a woman’s opinion to see if he was doing it correctly.” Suzanne wasn’t home but when she told me that he’d called for that reason, much later, I got a big laugh.

It went well, and I did the front of my skull. I nicked it a bit and it still hasn’t completely healed as I am a tad short on white blood cells. Our friend, Tim Jones, said it really suits me. He said I should leave it like that, and not put the wig and scarves on.

I get the feeling I have told you this already, have I?

Consider it “chemo brain”...a state of mild dementia if I am repeating myself. Anyway I would advise everyone to get their head shaved just once in their lives.

It is really cool! I can’t stop touching the curves of my skull. It gives you a liberated feeling to be bald. I got a big laugh out of my sister, Rosemary’s, reaction when I emailed her from my blackberry, a pic of me receiving my second chemo, bald as a bat. She was like “OMG.” And then on the phone: “Oh. Em. Gee. Nora, I can’t stop saying oh, em, gee.” Love it.

Around the time Mike and Trish, and Tim Jones and Jocelyne came over, actually it was ten minutes before they arrived....a lovely woman across the street, Marie, came over and gave me a lovely scarf and a few wee things and a lovely card. It was so nice of her. Tracy in England also sent me a beautiful card and lovely wishes. These have filled my heart, along with Monique's lovely presents, and wonderful audio programs recorded for me for my eight days "under" after each chemo.

As usual, I cannot go without a cute pet story. My friend, Tim Tiner, in Toronto, has a whole buncha cats these days, as Jamie, his stepdaughter, has rescued four, and has a coupla foster kittens right now. When I visited him a month ago in Toronto, he told me two cute stories I just have to share.

The first is this cute mental image. Picture Tim and his partner, Ellie, in bed with the blankets up to their necks. (Sorry Tim and Ellie: strangers are now picturing you in bed.) Michael, their black and white lead cat, a sweet non-bossy boy, burrows under the blankets. Now picture Michael emerging with his head on the pillow between them, and his cat body under the blankets. Sleeping. Gold.

The second story is hilarious, most especially if you knew how little Tim likes handyman work. Tim is a nature writer, and you probably have seen his and Doug’s co-written, excellent series of books, called Up North, Up North Again, Wild City, and a few more.

They catalogue the flora, fauna, geological, and constellational sights you will see while camping or cottaging. Tim’s hilarious anthropomorphizing of animal behaviour, in order to explain the animals to us, are priceless gems. Doug’s lyrical descriptions are literary and beautiful. I was so lucky to go on numerous canoe camping trips with them while they researched the first books. By the way, if you revisit my earlier blog where Tulip’s mom went canoe camping and I reminisced about my days of camping with Doug and Tim I added pics of Doug, Tim, and I at Temagami.

Here is the cute story of Michael-the-Wondercat. One day Tim could not find Michael. He called for hours and finally heard a response. Michael was crying a far away cry. Finally Tim located him. Michael had lodged himself down between neighbours’ adjacent decks, about ten feet down, and there was nothing for the cat to climb up via. Nothing he could scratch-hold or jump up onto. He could neither move laterally. Stuck.

Tim hung himself down the “canyon” and tried his best. Nothing worked. He got out his ladder. Too short. Finally Tim went into his basement workshop and began making a ten foot long ladder. Making one! Hammering and sawing all ten feet of a ladder from scratch.

As time went on, and Tim was sweating and grunting through the creation of this ladder, suddenly, he heard a noise. He was not alone in the basement! Sure enough: Plunk. Who landed on the counter of the workshop but Michael himself? In Tim’s words, it was like, “Hi Timmy! Whatcha doin?”

Well, I am going to close off by thanking you for reading this, and especially thanking those, like Suzanne McGee, for posting on here a word or two, and those who message me on Facebook and email. You are so incredibly kind. Thank you. Here are some pictures now.

technical note: the weird spacing is the fault of blogspot.com, not me. I spend twenty hours, it feels like, correcting the arbitrary spacing between paragraphs of each blog.

MRI and Biopsy to Check if it Has Spread

Tulip is the cutest 'person' I have ever met. She is the canine version of my beloved "Kitty," my 18 year old platinum burmese four pound cat that died of kidney disease last year. Tulip is four pounds also. Sweet tendrils of black hair are lately coming in here and there, but mostly she is blond with chocolate almond eyes and a black nose that looks like someone sewed a button there. She is a rare long-haired chihuahua and, like Baxter and Jaida, 'suffers' from a case of high self-esteem. (As if that could be a problem.)

What is so cute about her is how she teases you. She does this to her mom and me: dances at the foot of a bed or couch as if she wants to board it, then dances back out of reach when you reach down to help her up. She seems to giggle at our frustration. She smiles if you scratch her in the right place, and she controls all other dogs' locations.


Zoe, a nine-year old grey harlequin Great Dane, lay on the sunroom bed with me all night and Tulip decided she no longer wanted her wee doggie bed here and seemed jealous of me and Zoe. Zoe is as big as a person but that didn't stop Tutu. She wormed her way under the blankies, and curled up against Zoe's warmth. Fine except for the fact that if Zoe moved she got a big growling warning from four pound Tutu. Zoe, like all other dogs, ended up frozen still cos that is what Tulip (Tutu) demanded.

This morning Eiger and Bucky's faces appeared in the frosted glass panels in the sunroom door. Tulip jumped onto the night table and growled at them. They obediently sank to the floor. She is so full of happiness at her power over gigantic dogs, she giggles and floats back onto the bed. "I am magic!" she seems to declare.

Yesterday I met with Paul, my chemo doctor, and he was as kind as he ever was. He is genuinely upset that my nausea lasted a week and said that although not everyone gets nausea, that he is determined to reduce it. He prescribed an anti-nausea drug that we will have to pay for and Dave won't be happy. I told Paul that a week of nausea was followed by a week of constipation and that all three weeks after the first chemo there has been a lot of fatigue.

I lost my wallet and have been driving around with no license for two days. Also my OHIP card and hospital card are missing. The Queensway Carleton hospital was very cool. They gave me a new hospital card right away. The social worker read me my ohip number and told me the social worker at Queensway Carleton will give me a hundred bucks towards the fifteen dollars per day parking. This is useful as I pay fifteen bucks for every doctor meeting, blood test, chemo appointment, and scan. End of December, when the chemo is finished and radiation begins, I will be paying fifteen bucks a day for each radiation treatment. I will have twenty-five radiation treatments.


Because I had no money (Dave's Visa card is on "declined" all the time lately, and there is zero in my bank account right now) I put the blinkers on the car and parked illegally, asking the security guard on the way in to my doctor, not to tag me. It worked out.

After driving home the downtown dogs I went to OHIP and the same clerk at Canada Services office in City Hall gave me a new temporary driver's license and OHIP card for a mere ten bucks (which I found in the glove compartment, courtesy of Dave). Sometimes it is good to be Canadian.

Courtenay and Dawn have spoiled me yet once more. I have never owned a designer piece of clothing, and once they found out my hair was falling out they went online at Courtenay's to a designer scarf place. Then they called me in from Court's back deck (site of many a great party this summer) and pretended we were voting on the best scarves. Then Court spent her birthday weekend driving over the border to Ogdensburg, and driving back with a present for me.

On Thursday night when I had thought the party was for Courtenay, and had balloons, flowers, and a wee gift for her, they instead presented me with a four hundred dollar real, genuine Pucci blue scarf!


I guess I have to revise my no headscarf stance.


We had a really great time, and I gotta say, the friendship of Courtenay, Dawn, Jordan, and Tyler and Christine and Mike brings me the greatest joy anyone could ever have.


Today the hair is flying out. I put a hand up in my hair and massive amounts are coming out. The wig appointment I have on Tuesday is for a person with a bald head (otherwise they can't fit you right.) I don't think shaving will be necessary, but I will probably go to a hairdresser for that on Monday night if it all isn;t out by then.

later...
Just back from another MRI of my bones. Radiation oncologist thought he saw cancer in em, but he is wrong, I believe. I think what he saw was just arthritis. He will get the results from the Saturday MRI (cancer patients use the MRI machine on off hours) and let me know within the week ahead. Thursday I go for blood test at ten a.m. then the chemo at one p.m.


The MRI is horrible. About an hour this time. Jack hammering and bells ringing and awful sounds. Afterwards, I found my way back to the parking lot by the hair that had fallen off on my way there. Time to get the remainder shaved off. I am weepy and depressed, chemo brained and miserable.

the world behind the world

You know how you get to be friends with someone or you become a neighbour of someone, and you suddenly see something? It may not apply to you, what you see or hear them say about someone or something. It might be a moment of great compassion (in an "A side" sort of person. It might be the opposite characteristic in a "B side" one). But you just know it will come your direction one day.

When you have late stage cancer it comes your way. The compassion is instant: whole-cloth, enduring, patient generosity and lovingness. You are blanketed in a top-priority care system that comes from deep in their character. Mike, Christine, Joanna, Ellen, Adrienne, Elizabeth, Hannah, Jordan, Dawn, Courtenay, Bill McLean, Monique, Allison, Leah, Amanda and Ramsey, Rose and Bill, Ing, Siobhan and Sinead, Suzanne McGee, Keith, Suzanne next door, Timmy and Doug, Cathy and Leslie, Ann and Peter Forth, Tracey Gleadhall, Jocelyne Monette, Luanne, Tim Jones, Abby, Norma, Sylvie Bedard, Penny and Shelley, and all the people who read the blog and have sent me good wishes are exactly the beautiful, compassionate people I ever thought them to be. The size and amazingness of their kindness has been a gift right from God. That I ever got to meet any one of them has been a blessing nothing could ever top. My friends from Wordscape, like Steph and LeeAnn and Neta, and Deb astound me. That I am on prayer lists for them and that I matter so much to them fills me with amazement. People's capacity for kindness is awe-inspiring.

The frightening trait you once witnessed in the B side person, however, will also beam your way. What once gave you pause,  aimed at another will come at you. Perhaps that opposite-of-compassion quality will only come at you if that person is under stress. They can't cope. In the process of their drowning they drown you too.

You have always known this about that B side person you may have sheltered and nurtured but normally you have no needs from them so you pray you never have needs and won't have to face it.

But life doesn't always hand you tough patches one at a time.

Right now my neighbours, terrified there will be a kennel opening up behind them are acting crazy. I cannot convince them otherwise, not that they give me a chance to. They are the kind of people who seem like they must listen to right-wing, old white-man, bitter a.m. talk-radio; their hearts lean towards finding fault in others, and paranoid fantasies of the peace being constantly under siege by potential malfeasance.

Jordan and Dawn and Dave and I are on the back deck with my three legal dogs and suddenly there is a breaking down of the cedars on one side of the yard. Cracking twigs drive the dogs barking at the people who are doing this. Cameras flash and shouts of "That was a good one" and "Gotcha" abound. I race towards the dogs and see this couple in their fifties snapping pics as the dogs charge them. why they are taking pics? The woman shouts "it's for the City."

The city knows we only have three dogs and are compliant with zoning laws. They have been sent by my neighbours enough times to check us out. The local community association head, however, has a bee in his bonnet about "people running businesses out of their homes who should be paying thrice the residential tax rate."

I have explained we pick up dogs and drop off and are always compliant with the laws. What he says about the tax we should be paying is not even true, according to the city. But still he has gone around to the neighbours, made up a story and asked them to take pictures of our backyard. It is harrassment of us, by people worried about their property values should we decide to become a "kennel." They've done worse to us. Lied on a review of my business, pretended to be a disgruntled client there and only removed it, coming to my door to admit what they did after I cried my eyes out for a month last year. The evening ended with the man yelling, in response to my simply cutting through and asking him to please leave me alone this year as I had just been diagnosed with stage 3b out of 4 stages of cancer, "WHO CARES? WE'RE ALL GONNA DIE ONE DAY!!!!"

I called this blog "the world behind the world" for a coupla reasons. One is that we are living among one another, shoulder to shoulder on this earth and certain absences of a compassionate attitude in people get brushed aside by us, not magnified, as we properly strive to ignore the intuitions that arise about certain people. We even sometimes joke that if "the junta came through this town" that this person or that person would be the first to line up to assist with the torture, or voluntarily pick up the phone and turn in the minority hiding in a neighbour's attic. Without being melodramatic, I can tell you that when you are poor, and very sick, the composition of people's character matters.

When I went to Christine and Mike's cottage for three days last week Dave was slack with the stanching of the dogbarking and now we are under seige again.

My hair is coming out in clumps. It  started as a few hairs on Sunday and now it is clumps. I am scared. I love my big hair. I am vain and I do not want to be bald. Bald chic is for skinny women. I, on the other hand, will look scary. I am not going to be the scarf on the head type. Scarf on the head looks good on orthodox muslims. I am so depressed about these clumps coming out I fantasize about running in front of fast-moving trucks. My scalp hurts.

The nausea was awful and lasted a week. Twice I had to call the nurse to come inject me to get rid of it. Thank God this is Canada and even poor folk like me with no drug plan get free drugs, radiation, herceptin, chemo, and home nursing visits. In the tv show, "Breaking Bad," the main character has to cook crystal meth to pay for this 90,000 dollar treatment. Even Obama can't get guys like the character on this show legal, free treatment. Why? Cos the character of the majority hearts down south of us in Canada are on the B side. Scary. Still, we aren't immune here on this side of the border. If I want the good anti-nausea drugs here, it would cost $2500.00. Not money we have.


I had a biopsy yesterday on what the radiologist thinks is a  cancerous node on my lung. Atop, not inside the lung. It hurt. Two needles, four inches long, were slid sideways into my chest and it hurt. I looked in the test tube afterwards at the culprits: red tiny dots floating in a green solution. About to be sent to the pathologist. I don't have to wait for results. I have known all along the cancer had not been contained in the flesh removed during my surgery.

Dr. Caudreliere is my radiation oncologist. I met him two days before Paul, my chemo oncologist; about a week or so before I had my first and only chemo recently. The chemo oncologist is considered your main oncologist.

I was waiting in the examining room to meet him. The door finally opened and instead of him, a woman appeared, telling me she was his resident. You may recall how hard I worked to avoid being operated on by a student. In short, I told her I had not been asked if I cared to contribute to somebody else's education at this time in my life and for some reason I didn't want to do so right now, and I said this in complete, tearful meltdown.

Later, when Dr. C. walked in, I had gotten over it and apologized to the resident, and then Dr. C. was sitting in front of me in a gorgeous, expensive shirt, talking in an accent like that of Peter Sellers in the Pink Panther movies. I half expected him to ask if I wanted a "rrrrhhhooom" to gather myself in. He is from France, near Belgium.

They told me that "all the cancer has been removed: the surgery on June 7th has taken it all out and I am cancer free." They were like first time parents with a five year old explaining about Santa. Really needing me to buy in. I pulled a face. The one where one side of your mouth smirks. He said "what is that? what are you thinking?" and I said that after reading about HER2 proteins, or accelerators riding atop the cancer cells, whipping them to spread fast, far, and wide, carrying their own blood supplies, I had zero faith that that was so.

Part of it is me protecting myself from future meltdowns. Yesterday I was lying on the ole biopsy bed, now deeply familiar, and gazing in the ole ultrasound screen, watching the black oblong mass that looked rough around the edges, where my lymph node on my lung was supposed to be, and I had a moment of "told you so."

I am dead, let's face it. Maybe a year, maybe five, but those odds that Paul told me would improve with chemo, herceptin, and radiation, do not add up to a total 100 percent turnaround in my condition. I feel weak a lot of the time, tired, faint, and my hair is coming out in clumps. After a week of nausea, I had a week of deep fatigue and constipation.

My sweet niece, Hannah, asked me how the dogs were dealing with it. Glad she asked. Jaida, who usually pummels me with her paws and licks me indiscriminately, and Simba and Poirot, too, were circumspect and respectful. Jaida put her tongue on my skin once, curled her black lips back and down with her mouth open in a frozen, hilarious grimace. She curled up with all four feet near my head in the week I spent sleeping and barfing, her pitbull face near mine. It was adorable.

Bobbi, Joanna and Ellen's dog, who lives on my bed, was even cuter. She normally gives me these rough, jokey hugs. That week, any time I was particularly sick and miserable, she came up right next to me and slept touching the sheet I was wrapped in. Very different from her bottom of the bed preference. Her eyes told it all, she has been sick enough in her life to really identify.

Eiger is hilarious. When I melted down at the neighbour, and Dave escorted me, sobbing, into the house, I lay on the bed, and Eiger came right up, all black and white Great Dane of him, and nestled down right next to me, all curled up, leaning against me. Bucky hiked his arthritic ole frame up onto the bed to join Bobbi and Eiger. (Bobbi grrrrr'd at him.) I will try not to melt down again in front of them as it is very bad for their emotional health, not to mention mine.

People tell me to shave my head before the clumps look too weird, but I say, if I can tolerate the dog hair all over the clothes and bedding, my own hair should be equally tolerated around the place.

The cottage was so amazing. I will add photos here once I get them. it was beautiful and peaceful and fun. Poirot cracked us up hanging off the dock one day as we three swam and he tried to jump in after his athletic sister, Simba. He lost heart halfway through and kind of hung there indecisively til gravity decided it for him. I am so grateful to Chris and Mike for those days of bliss.

I also am still recalling Bill McLean's incredible three day gift at a resort. It was so lovely.

Jordan and Dawn bought me and Dave tickets to Tragically Hip and it was unbelievable. We had the best night ever at Bluesfest. Equally amazing was John Fogarty's Bluesfest concert. Christine and Mike and Courtenay and I had a riot, singing all his original stuff from CCR with him, and Courtenay got me the front stage apron to watch him from, by virtue of her kamikaze crowd-infiltration tactics. A girl after my own heart.

How many nice evenings on Courtenay and Tyler's balcony, and Chris and Mike's living room sofas have I enjoyed all summer.

When it comes to good people looking after me, I am truly blessed. Hell with throwing myself in front of a truck. There is still so much loveliness to live for. Hope I don't wear out Chris and Mike. A warm long summer and autumn are predicted. Even if I can't afford the good nausea medication it is a beautiful life.

Everyone is living a hard life even in this beautiful summer. Go easy on them. Be generous if you have things to give. It will more than come back to you. How you give, whether it is care, words of love, or just an opportunity to use a pool, as Monique has given me, is the total bulwark against the darkness. Look around you at people other than me: the opportunity to give will always come back to you. In the world behind the world, we are fragile, suffering, mortal creatures having a short life, who crave the otherworldy joy that is kindness, thoughtfulness, and loyalty.

chemo 1 of 6 occurs

It was a bit of a surprise when the phone rang two days ago, Monday, July 18th, at around one p.m. It was the booking office of the General Hospital. I had an appointment the next day for Chemo Education Class and an appointment Thursday, today, for chemotherapy itself.


Very happily surprised, I was, because it shows what great hands I am in with Dr.Paul Wheatley-Price. You see today is the exact six week anniversary of my mastectomy/lymphectomy. You can't start chemo till the wound heals, which, typically is "six to eight wks after surgery". I had 26 stitches (dissolving stitches) plus extensive cutting and sewing underneath (or is that sawing? Lol). The largest tumour in my breast was only a third of a centimetre from my pectoral muscle by the time I got to surgery on June 7th, 2011. This aggressive cancer grew seven tenths of a centimetre closer to the pec by the time I had the surgery since the scan was taken a month earlier. (Dr Price had told me that contrary to normal cancer cells that double in size every 90 days, mine grow faster. My cancer, found by me in the last week (a wk before Easter) of April, was removed June 7th.) Very happy Paul (the doc) has gotten me into chemo so fast.


I mentioned in my last blog stuff had to be ruled out. The node on my collar bone/sternum area looks suspicious to the radiation oncologist and he wanted to biopsy it when I met him on the 11th of July. Paul and I both said the puncturing of the body so close to chemo is crazy cos it cannot heal.


Chemo eats the healing cells that are dividing in mitosis to close your wound. Paul went ahead with the chemo. In retrospect they should have booked me to meet the radiation oncologist much earlier while i was healing from the surgery. I could have had the chest biopsy after a CT of the thorax..upper chest ...within the first weeks after my surgery. Oh well. I just got a call right now, in fact, saying the CT is gonna be Monday August 2nd. They offered me one this coming week but then I would miss out on the cottage.


Good news. I don’t have to blame this on a medical mistake (see blog no. 1). I have dense breasts. I will give you the link soon that explains that nobody gets a proper diagnosis via mammography if you have dense breasts. There is a new technology now that will make mammography obsolete. Trouble is there are trillions spent on these machines in all the hospitals.


I am off to chemo now. Talk to you later.


Later


Christine was an absolute angel of mercy today. She spent seven hours with me today. Brought me brunch and we had our Subway sandwiches at my dining table before leaving for chemo. I was an emotional wreck. We talked about the head/instinct war inside me. Head knows I have only a twenty five percent chance to live five years if I don’t do it. Instinct is not to put toxic chemicals in the body. I broke down and got verklempt in the car but soon we were harmonizing to Eurythmics’ Sweet Dreams at the top of our lungs in the car. Today was the hottest day of the year. The forecast was for 37 degrees Celsius (106 Fahrenheit) plus humidex. It was 47 degrees Celsius today.

I was terrified. Nice nurses. I lay on a hospital bed in a “pod” (open room divided by office dividers). The nice nurses poked me and ground the needle under my skin five times. Twice they found a good vein, set up the salt water i.v. and then my vein exploded. One nurse said she had used up her turns at it and was forced to give it to another nurse. Same thing happened to her. They twisted the needle this way and that under the skin and I had to squeeze Chris’ hand hard to cope. Finally they set it up and the vein held.

Next time or so, they told me, I would have a day operation to install a port under my skin directly into the artery nearer my heart, up on a shoulder, as the chemo eats the walls of your veins, makes ‘em too weak for the chemo.
First of my three chemos they pushed into the i.v. was the red devil.

They screwed it into the hanging i.v. port where it met and mixed with the salt water. The red devil (the E in FEC) is responsible for hair loss, which will occur 2.5 wks from now. The next one the nurse had to push into the i.v. bag slowly, via a syringe. This one was the F in FEC. Fleuro. Diarrhea, nausea causer.

The last one was the C. It was hung like the first and pushed into a machine that punctures the tubing and mixes with the water. I had to crunch ice from two freezies in my mouth as stats show fewer mouth sores will occur later. It gives u a sinus flu and by the end I felt my eyes and nose water and tingle. We arrived at 12:50 and left around 4:30. They’d had to do my blood levels first, which from now on I must see to myself within forty eight hours of starting chemo. My next chemo is August 11^th , exactly three weeks to the day from today.


Your blood’s white blood cells need to be at a certain level, and your platelets, too, to prevent clotting. You need to phone the hospital or a dynaclinic lab and get a pre chemo blood test each time. If you are not well enough, blood wise, they push the chemo date back till you have recovered from the last chemo.


We went out into the peasoup heat outside and drove ....and got lost....tee hee...and finally through rush hour traffic (we drove by the mangled bluesfest stage) to the pharmacy where we waited for my five prescriptions on four prescription pad papers to be filled. Bought tons  of other stuff.


It would cost 2500.00 for me to buy the anti nausea drug that works.Chris drove me home and I had water, snacks, and put on a Pre recorded Piers Morgan show in bed, lights off, blinds drawn. Nausea. Nausea. Nausea. A level never before encountered. Water. More water. Two different nausea drugs. Dave was beckoned to come in and lean on me and hold my hand (I feel better, like Temple Grandin, being squeezed under the stress of nausea.) Finally, could not take it anymore, and against Paul’s advice, put my finger in my mouth in the bathroom, and projectile vomited, yelling from behind the closed door to dave to STANDBY!!  


I felt instantly better. We lay with Eiger in the twilit sunroom on the big bed in there and I looked at the pretty flowers in the back garden while I made Dave read me from Time Magazine. Then I went to bed in the dark front bedroom and slept till 1:45 where I wakened and could not get back to sleep, not feeling too well.
I am not allowed to use the same toilet as Dave for 48 hours as my pee is full of dangerous chemicals and will be reddish pink for two days. Lid down, (dogs) bathroom door closed. (Like I asked him for twelve years. Lol)
Hungry but the thought of water, Ensure, or food makes me sick. Nurse coming tomorrow.

i hAs a SiMba GirLfrIend. Dont tell Jaidas.

The 3:10 to Chemo

Sasha, Tutu and me, Fri, July 15th, 2011

In the remake of the Western classic film, “3:10 To Yuma,” the earnest Civil War veteran, Dan Evans, played by Christian “Yummy” Bale, works like the devil, in the service of the angels....(that being the delivery of Russell “Even Yummier” Crowe—Ben Wade—to Yuma, where he can be prosecuted and finally, justly, convicted of all the chicanery that he has inflicted on guys like Dan Evans).

Evans, while dragging Wade to the train to Yuma, reveals something to Wade. He has a bad need for his son, who is offscreen, helping, to see him do just one right thing, to erase the shame that has dulled the edge of (his) husbandry over the years: an act of cowardice he committed in the Civil War.

Crowe/Wade boards the 3:10 train politely; as Evan's son watches, Wade elaborately surrenders his weapon in front of the dying Bale/Evans. Apparently, Wade leaves in the train.

The last thing Bale/Evans has seen, therefore, is justice being done: a justice that makes the dying man a hero in front of his son.As the train pulls away, however, Wade whistles for his horse, who perks up his ears and immediately canters after the running train into the distance.

If I had to name a famous film character whose situation reminds me of mine these weeks, it is Crowe/Wade's. I am so afraid of hurting good people by departing too soon. Just because I get away doesn't mean they aren't heroes for bringing me this far.


On Wednesday, Paul Wheatley-Price, my oncologist, met my eyes with gentle, caring, tenderness as he placed himself on a stool in front of Christine and me. With the kindest of manner, he said "we have entered all the information on your pathology report into our prognosis program. I understand you are anxious to begin all the treatment as soon as possible. Has anyone interpreted your pathology report yet?"
"No."
"If you do no more treatment, there is a 25% chance that you will live five years. In other words 75% of people in your situation die within five years. Now, please understand that with chemo, herceptin, and radiation, the numbers do change in your favour. To what exact percentage, we can't say. You are at stage 3b out of 4 stages. Stage four is considered incurable; palliative. This is what we will call you should your cancer be found elsewhere on your body. You might buy some time there with herceptin and chemo, but people die from stage four cancer."


I know that Christine has seen me collapsing in her arms too many times as I read and researched in the past two and a half months, trying to get the skinny, on my odds. It has been an obsession, trying to find out where I stand. Now I know. I am NOT going to collapse now. I am going to make her proud, and make the doctor learn that telling me the truth is easy to do. If I collapse, he will start, perhaps, to mince his words in future. I need to train him to be straightforward so I am damned if I collapse or cry.


My friend Kate just watched her mom leave this world in the worst way possible. Let's look at the list of the best way first, in order to see just what I mean.


Preparation: Losing someone you love requires preparation. In everything in life, preparation gives you control. You need to feel, have those feelings validated, reflect, abstract from that reflection, develop a context in which to place the anticipated event, and honour it appropriately. To illustrate the importance of preparation in life, I offer you this anecdote.


When I was a university student I earned a loan by volunteering in a daycare for toddlers on campus. PET, or Parent Effectiveness Training, was given me by the director.

"Always go in and warn the toddler a half hour ahead of time, prior to changing his/her activity. Go in and point at the clock and say "toys will be picked up and put away when the big hand is on the top of the clock" Go in again at fifteen minutes to lunch and explain that lunch will be in fifteen minutes. At five minutes to lunch, go in and ask them to help you put the toys away. This prevents tantrums."


I have never forgotten that. It is the difference between screaming, crying, protesting against an event, and working, realistically, towards one. Giving people control of their lives in a dignified way is the best gift you can give.


Kate's mom, dad, and Kate, were not told she was in Stage Four and therefore terminal cancer. There was talk the brain tumour was a separate cancer, even. Until two days before her mom's death, when the homecare nurse happened to show Kate a piece of paper saying "palliative," none including Valerie had any clue that she was dying.

Each event in the previous two weeks was presented phenomenologically to them, by the medical experts, sans context. No oncologist had ever sat them down and given them the significance of metastasis to the brain in the context of it being one of the four organs to where breast cancer metastasizes. Nor of what it means to be Stage Four at all. Was it her age?

I brought up my interest, based on Kate's mother's situation, in having a brain scan to my radiology oncologist and to my chemo oncologist, both of whom I met for the first time last week, and was denied. They insisted to me that despite the fact the brain is one of the four organs hit by breast cancer, cells normally go to the lungs, bones, and liver first.

Yes, they say, occasionally breast cancer metastasizes to the brain before the other three, but NORMALLY it hits the other organs first. Does this seem crazy to you that I can't be scanned for metastasis to my brain? That my liver, bones, and lungs have been scanned but not my brain? Or that Valerie's cancer in her brain is immediately deemed "a separate cancer" simply because NORMALLY the cancer hits the other three organs first? You can be sure none of the doctors deeming it brain, rather than breast cancer produced a shred of proof that it was an entirely separate cancer. Why wasn't this seen as a metastasis, like it would have been had it shown in the other three organs. Why weren't they told this meant she was in Stage Four? That she was terminal, therefore?

Or let's go the other way. Let us pretend there was proof that the cancer was a separate one. The patient had a tumour removed from her brain and it did not go well. Was the danger of the surgery not going well explained ahead of time? Were people properly sat down and made to demonstrate that they actively understood the risk of the operation not going well? If this was indeed a Stage One new brain cancer, the operation was damned dangerous and people should have known what signs to prepare for and what significance was held by what phenomenon they might experience post operatively.

Or......let's go the third way...what if Kate's mom and Dad, while Kate was in Europe, were indeed told the truth at the correct time by the oncologist and radiologist. What if they were not prepared to accept what they heard and did a revision on their way home? I am thinking that telling someone they are in Stage Four when the breast cancer has gone to the brain is standard ops and probably was done correctly. In response to a follow up question of theirs, the doctor may have added a throwaway tag, similar to "or perhaps this is a completely different cancer, who knows" and in the car on the way home this less final statement, being less of a death sentence than a Stage Four cancer, becomes the preferred truth. See Meghan's heartbreaking story, for example, from the blog, "the Bee's Knees" on this exact topic. She too had breast cancer that moved straight into the brain, bypassing the more common liver, lungs, bones.

http://ms-mae.blogspot.com/2010/01/few-more-details.html

www.thestar.com/living/article/829909--unfinished-business-how-one-man-keeps-his-late-wife-s-memory-alive?bn=1www.thestar.com/living/article/829909--unfinished-business-how-one-man-keeps-his-late-wife-s-memory-alive?bn=1


The big hand was just two minutes away from the top of the clock, and they were either unaware, or hiding from their daughter, the fact a clock was in the room at all.


Personal Care: Everyone wants to spare their closest family and friends from some of the indignities of the palliative patient. In my father's case, there was a long, non-traumatic time before he died, for decision making re: who will care for the day to day nappy-changing, etc.


In my case I am going to talk to people at a care facility soon. I would like to set up a file there and one at the funeral home long before my cancer metastasizes. I would like it so that Dave is left by me a list of people and phone numbers to call for the time when I no longer have all my faculties to remember each detail. I do not want him cleaning up bodily fluids. (He will, however, be expected to put away my toys and get me to my lunch on time and he better make that lunch too, for that matter! I insist on animal crackers.)


My sister Rosemary is arranging for my wig. I'm going to start chemo after some suspicious stuff gets ruled out by a week of testing. I don't have a date. Stuff is up in the air. I will have 18 weeks of chemo, a year of herceptin and five weeks of daily radiation. Then that's it. If it comes back it is game over, give or take the borrowed time.


If you hear a train whistle a couple of years from now, stop and listen. If you listen hard you might hear the sound of a dozen dogs cantering after it. And please know I mean YOU, who are reading this blog: Just because I get away doesn't mean you aren't a hero for bringing me this far.