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.
a
pwetty eiger in my wig
