Thursday, April 30, 2009
Wednesday, April 22, 2009
Spent some time at the SYC Friday night with my loyal sidekick. We ran into a woman down there whom I adore...a true LADY in every sense of the word...someone I aspire to be like when I "grow up". And this woman said to me, "The thing that amazes me is every time I see you, you are smiling-and genuinely smiling." I said "That's because when everyone sees me, I'm not wrestling alligators...let me explain..."
Eighteen months ago I received the mind boggling news that I had been chosen to wrestle alligators. I have no formal training in wrestling alligators, had never studied the technique, and--let's face it--was often chosen last in gym when picking teams. Still, the telegram came and wrestling alligators it was. My life continued on the same course, except for periodically I would have to excuse myself from the norm, leave the room, and wrestle alligators. My friends and family are not allowed to come watch my matches, and I try to tell them about them, but the words are often hard to come by.
Going for monthly IVs which render me on the sick couch is difficult. Going for scans every three months to monitor the beast is excruciating... and getting harder and harder each time. I cannot even begin to describe the fear and anxiety that accompanies a late-stage cancer diagnosis... yet, I continue to try.
People look at me funny when I try to explain that I wrestle alligators on the side...surely I must be joking...I look too good (too healthy) to be serious. I don't APPEAR as though I've just returned from a death defying match. Still, if you look a little closer, I am somewhat disheveled, move a little slower, and the sparkle is sometimes a bit duller than it used to be.
I try to remember with everyone I encounter, that we all have our alligators to wrestle. My hope is that one day I'll be standing with my fellow Hot Cancer Babes at a huge yard sale...a yard sale jampacked with alligator shoes, belts, handbags, boots, etc. Until that day, we will all continue to hold hands and get back out
there in the ring.
So, my fellow bloggy readers, I hope that this rang true for you somehow.... or helped you understand a little. For me, it reminded me that given the cancer I got and how I feel right now... today, I am still one of the lucky ones.
Tuesday, April 21, 2009
The IV is in. After today I have had 12 Herceptin doses with only 6 more to go. No blood today, just the IV poke… a little painful but no big deal. The piano player in the lounge area was playing depressing music again; there’s nothing like a little Danny Boy with your cancer treatment!
I have so much to write about both here and in my other blog, but I got really sick last week with a devil of a cold/ flu thing which is still hanging around. I was eyeing that souvenir bottle of Neupagen (the white blood cell booster) I kept after my last chemo, hoping for something to boost this immune system. Instead I downed tons of my Monavie, lots of extra VitC and some elderberry juice.
I started on a new daily thing of drinking an apple cider vinegar cocktail which has helped with the illness too. Two teaspoons of Organic
This week I am going to get my first pedicure since last fall when a lot of my toenails fell out from chemo. I just realized the other day that my fingers are no longer numb either. Not sure when that stopped. This past Wednesday or Thursday was the one year anniversary of my first chemo, and the one year mark of the beginning of the group of women that I hang out with over at breastcancer.org. It’s funny you know, all these anniversaries. The further away I get from active treatment the better I feel, but somehow it seems almost scarier. Now I get to walk amongst the “normals” as if nothing is different about me. I try to go into social things and not talk about cancer all the time but it’s hard. Last week I was at a party, but only a few of us there knew about my cancer. Until one of the people in the know talked about my hair coming back, which took a few minutes for me to realize how it must have seemed like an odd comment to someone listening in. Imagine hearing.. oh your hair is coming back in so nicely..... and wondering what the heck to say or do if you don't know the story.
Then there is the issue of me being a magnet for cancer patients coming into the store to talk about cancer. I am happy to do it, but man 3 cancer talks in a day certainly messes with a work schedule. I am trying to learn how to get more done in a day with a schedule and goal setting and such. I am not good at being organized, and I don’t really like it either. Since the store is so slow I have no choice but to maximize the staff hours and my time and that takes planning. The store is so slow I am beginning to wonder how much longer I will be able to keep the doors open. My fear of rejection and lack of organization makes it even harder to push people to buy. There are only so many ways you can present a sale. Let me know if you have any brilliant marketing ideas! I am open to anything!
My herceptin is done, I am off!
Wednesday, April 15, 2009
And now for something completely different? My doctor actually talked to me like he knew who I was. Since day 1 it was my family doctor who has taken better care of me than anyone else.
Today I have a terrible flu/cold bug, headache, body ache, nausea etc. I am whacked out on (pain and cold) meds and napping all the time. Remind you of anything? The funny thing is today( or maybe tomorrow, I have to look it up) is the first anniversary of my first chemo. The physical feeling of flu is actually quite similar to the symptoms of chemo. Gratefully, the horrible side effects are not here.
As you can imagine, trying to run the store while sick at home is not easy. I had to either close the store or call my assistant in from a day off. Luckily today my staff agreed to sacrifice his day off. We have never been able to afford to have an extra trained person on staff so if I am sick and my assistant is committed elsewhere we have to be closed. That is the only option. Tomorrow we'll have to see what happens.
The recession is hurting the store enough, we certainly cannot afford to close the store just for illness. We are lucky to still be open.
This week we get to work on a project planning our presence at the Busker festival. Unfortunately that is the same weekend I am hoping to attend the 20th class reunion of my college class at Middlebury College in Vermont. None of my classmates have seen me since my surgery and chemo. I really want to be there. Since we have no backup staff doing festivals at the best of times is not easy. We bring in at least 5 extra people to help us work the almost 30 hours that the festival needs to make it happen. We managed to get the store and all the festivals through last summer with me in chemo. I made an appearance at each festival when I was up to it and worked at the store for 2 days a week(most of you know this already). The idea of having me gone through one festival seems like no big deal, but my parter/ mentor Tim has always been at the festivals whether I was or not. Our original plan was to have Tim come to the reunion with me. Soooo, the idea of a festival without me or Tim there makes things much more complicated. I have decided that somehow or other we will get the store through the recession.
I am not sure how, but somehow I will get to my reunion and I am going to do everything I can to get Tim there too.
Let me know if you have any bright ideas about running the festival without the 2 senior staff in town.
Sunday, April 5, 2009
Herceptin appointment March 31rst.
I get blood work and the nurse has to dig around to get the vein to work, so now I will have a big honkin’ drug addict bruise on my arm. Then I see a different doctor from normal and he races through the appointment and tells me he doesn’t “need “my blood. He said some doctors order it by routine, but he doesn’t need to see it.
Then the chemo nurse (I get my non-chemo treatments in the chemo room, fun huh?) can’t get the vein for my Herceptin IV and digs around for the vein soooo… and of course she has to ask me about the port AGAIN!
I swear, if one more stupid chemo nurse asks me why I don’t have a freakin’ port I am going to scream. This time I actually almost cried when telling the story about how my idiot doctor never bothered to ask me about getting one until the night before my last chemo!! I would have refused a port if she had asked…. But bloggy readers… you may remember that the doc asked me “is your port in ok?” which was the first time she ever mentioned a port to me in almost 5 months of appointments.
So, back to the "I don't need your blood" craziness... if I don’t need blood drawn every 9 weeks, why the heck are we wasting Hospital resources to do it? In a centralized medical system like Canada has where test results are months and months behind you because of lack of staff/ money etc would think the docs could get their plans and stories straight!
Nurses arguing with me, Doctors racing through my appointments God willing I never get cancer again or ever have to deal with the horrific hell hole of a hospital ever!
Am I oversensitive, or is this all normal treatment and no one else says anything about it?
Are Canadians too damned nice for their own good? Their own health?
If you don’t complain about a health care system that you pay for everyday whether you get sick or not….
This is the link I am poking into today
I read about it in the waiting room. Apparently the Canadian system is not implementing World Health Organization guidelines for controlling cancer in advance through education, screening and diet etc. Will I be surprised if this is true?