tag:blogger.com,1999:blog-6651667074055611242023-11-15T23:49:35.637-08:00Bosom BlogMusings about the ta-tas region before and after cancer.Amyhttp://www.blogger.com/profile/00871696019086419473noreply@blogger.comBlogger48125tag:blogger.com,1999:blog-665166707405561124.post-85385660281500854612013-02-02T08:21:00.001-08:002013-02-02T08:21:24.439-08:00A Real GirlDear Friends,<br />
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I cannot believe it has been so long since my last entry. Probably no one checks this place anymore, but just in case, I thought I would write.<br />
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Years ago I used to send out holiday cards. Not ones made out of photos of my children. I could never accomplish that. But I would send out some kind of note wishing peace on earth, or a party invitation, or in more recent years, a lengthy email about my flawed life that made catty fun of the holiday letters we occasionally receive about the multitude of sickening blessings enjoyed by others. (Not that I don't recognize the multitude of blessings I enjoy.) This year I did none of that, so I wish you belated holiday cheer, and good health and plenty of joy in 2013.<br />
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Speaking of health, mine is good. January, 2013 is my two-year anniversary. A significant one given my particular disease. It has been a challenging couple of months leading up to and passing this milestone. Over Thanksgiving I was certain that the cancer monster was on the prowl. First it was one symptom, then another. I struggled to create and maintain holiday cheer through my bouts back and forth between feeling sure it was nothing and feeling sure I was doomed. Three doctor opinions (and miserable weeks) later I was persuaded that my cancer was not yet back. I know now that I was preparing myself for something bad to happen. It was January 2, 2011 that I felt the lump in my right breast. Two months later I was told that if I made it to two years without recurrence that was a meaningful thing. So Amy Little (as my friends call me) was getting ready for the sky to fall. It did not. If I believed it mattered I would give thanks.<br />
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So, in other news, I am growing new ones. Yes my friends, I am working on a major (well, maybe not so major by some people's standards) reconstruction project. There is nothing in this life that is more absurd than the process of breast reconstruction through expansion and implantation. (Heads up to the squeamish, and to those of you who grimace at TMI - now that you know I am fine, please close this screen and come back in a few weeks.)<br />
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In September I had surgery to insert "expanders" under my chest muscles and skin. The expander is basically a pouch made out of silicone. It has a tiny valve in it. Once a month I go into the surgeon's office for an expansion. To do this the surgeon uses a tiny magnet to find the valve and then sticks a hollow needle through my skin into it. Using a large syringe connected to the needle he squirts a tiny amount of saline into each pouch. To summarize, I have two balloons in my chest and once a month I visit a strange man who blows them up a little bit.<br />
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Once my skin is inflated to the point where it might look like I have boobs, I will have more surgery to remove the expanders and replace them with silicone implants which supposedly will feel more boob-like than the cement hemispheres that I currently carry with me wherever I go. As for nipples, my surgeon says "we'll look into that later." Whatever that means, but trust me when I say...boobs without nipples are like faces without noses.<br />
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All of this would be pretty straight forward (well, from the surgeon's point of view...for the rest of us it is a twisted, nightmarish effort to cosmetically diminish bad memories) except that my right side was radiated 33 times in 2011 so my skin on that side is so fragile that we may not be able to squeeze a new boob under there. (I hate to think of what the worst case scenario is here. One day the balloon inflater blows a little too hard and I explode?) Most people who undergo radiation for their breast cancer do not attempt this kind of reconstruction, but I did not have other reasonable options. My surgeon says my chances for successful reconstruction are 70%. (Again, it is not entirely clear to me what <i>unsuccessful</i> reconstruction might look like, but I guess I am willing to take the odds.)<br />
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The process itself is not too uncomfortable. I was laid up for about a week after the last surgery in September. I had the awful drains dangling from my body for about 10 days. Those are the pouches they attach to your innards after certain surgeries to allow revolting fluid to drain from the surgical sites to minimize the risk of infection. Twice a day you have to squeeze out the fluid to empty the drains. (Kind of the opposite process to the one I am currently enduring.)<br />
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The monthly "inflation" visits aren't too bad. I lie on my back close my eyes super tight, and the creepy man sticks a needle in my chest which hurts about as much as you would expect. The feeling of being inflated with fluid, however, must be one of the oddest sensations known to woman. (Think "Lars and the Real Girl.") (All names appearing in this piece are fictitious. Any resemblance to real persons, alive or dead, is purely coincidental.)<br />
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I've been inflated 3 times and am no longer concave which does make me feel a little better. I am hopeful that soon I will feel whole - or at least real.<br />
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I miss you all.<br />
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Lots of love,<br />
Amy<br />
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<br />Amyhttp://www.blogger.com/profile/00871696019086419473noreply@blogger.com3tag:blogger.com,1999:blog-665166707405561124.post-31598026567641918252012-09-24T08:02:00.000-07:002012-09-24T08:02:19.473-07:00Hair Today Gone Tomorrow?Hello my friends. I need to rant a bit about the ongoing hair problem. Last time I spoke on this topic, I think, I looked something like this...<br />
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But as with all things, time brings change.<br />
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Not too awful, but the above picture was taken a couple of hours after a shower. My head is covered with lots of conditioner and other anti-frizz products which I detest, but if I don't use them, I look like this.<br />
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You will agree with me that this is not a good look.<br />
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Everyone has an opinion about what I should do with my hair...everyone but me. I get comments like...<br />
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Cherish the curls. Nurture them. Use "No Poo" or "Some Poo". Don't wash it! (That one really mystifies me given the reality illustrated above.) Don't dry it! Go to a salon that does nothing but cut curls one hair at a time. Try this vitamin! Use this lotion! Cut the sides! Cut the back! Never cut it! </div>
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And then there are the comments from people who haven't seem me in a long time.<br />
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<li>"Oh what beautiful curls! Did you always have curls like that?" (As they are giving me this compliment they are patting me on the head with increasing vigor trying, like I do every morning, to smash down the chaotic growth coming out of my skull.</li>
<li>"Wow, I cannot believe your hair!I wish I had curls (this word seems to be polite code for ungodly frizz) like that. (This from a person with straight silky locks. Come on...really?)</li>
<li>"Oh my god! Look at you! I love it? What did you do to get those curls! (Oh just a couple of mastectomies, a few months of chemotherapy, some radiation, and a lot of time in bed...)</li>
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All I want is hair that is long enough to pull back in a pony tail as I have done most of my life. </div>
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This is as close as I can get to a pony tail.<br />
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I know, the resemblance is painfully obvious. </div>
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Oh well. In a couple of weeks I have an appointment at one of those strange salons that cuts each curl individually. Maybe that will help. If not, I may consider going back to this.</div>
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As always, happy to hear your thoughts.</div>
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Happy fall and lots of love.</div>
Amyhttp://www.blogger.com/profile/00871696019086419473noreply@blogger.com4tag:blogger.com,1999:blog-665166707405561124.post-88306689931877131622012-09-06T07:45:00.001-07:002012-09-06T07:45:29.365-07:00Mother "Friends"
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<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg8Qvx5SQ1ka_7Qx0wAH0MmnyiAlFEWzhVUfRhBO22ZG60avS3D84xcp31IjtfKF5cyXg8oXikGmR5y9P6c0kUOlvC0xgUjnP21zZ8zHcYBtc0cDelEB6Eeo7jQYehW2laHM5b06xFptNiV/s1600/8526_facebook_cartoon.gif" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg8Qvx5SQ1ka_7Qx0wAH0MmnyiAlFEWzhVUfRhBO22ZG60avS3D84xcp31IjtfKF5cyXg8oXikGmR5y9P6c0kUOlvC0xgUjnP21zZ8zHcYBtc0cDelEB6Eeo7jQYehW2laHM5b06xFptNiV/s320/8526_facebook_cartoon.gif" width="242" /></a></div>
<div class="MsoNormal">
<span style="font-size: 13.5pt;"><br /></span></div>
<span style="font-size: 13.5pt;">
I have a confession to make. I am one of those people who spends hours
every week snooping around on Facebook. I originally signed up for Facebook so
I could monitor my teenage children's online social life. It quickly became an
obsession, but one that was narrowly focused on my children. Every time one of
my children posted something or was "tagged" in a picture, I went
wild with excitement. I posted silly comments that I was sure my children
would find hilarious. I shared each post with friends and family. I looked at
it over and over again with pride and adoration.</span><br />
<span style="font-size: medium;"><br /></span>
<span style="font-size: medium;">As my children got older, busier, and generally more intelligent, their online presence diminished. During this period I became less busy, particularly when I was spending a lot of time at home during cancer treatment. That is when the obsession "metastasized". (Keep knocking on wood that FB fever is the only thing that metastasized. More on that topic in future posts coming soon, but no worries, I am doing well.) </span><br />
<span style="font-size: medium;"><br /></span>
<span style="font-size: medium;">I started reading all of the </span><i style="font-size: 13.5pt;">other</i><span style="font-size: medium;"> stuff on Facebook. I poked around strange websites that spewed liberal rhetoric and suddenly I became their "friend" and started receiving hourly posts from all kinds of odd organizations that exist nowhere but on Facebook, as far as I can tell. I began to "confirm" "friend requests." I began to read the statuses of my "friends" and wonder, "why did you post that?" "Who could possibly care, (except your mother)?" Then I started to notice all of the witty, empathetic responses to my friends' status updates and started to feel some "peer pressure" to post my own witty, empathetic responses. </span><span style="font-size: 13.5pt;"> </span><br />
<div class="MsoNormal">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh92pHV0rwMA1V9pjaL1mvdnBwLInWLTauPy7UUx8t0TC9KyIVo-oUcCvmwm3kh08nA1U9aEnXeh8WHWzf0dvKn1bK6rIHL4QOJcTquhmbH7smFynjozsPALZnGOV0fb-TAoA-ognl5f7E_/s1600/Iguana.jpeg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="149" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh92pHV0rwMA1V9pjaL1mvdnBwLInWLTauPy7UUx8t0TC9KyIVo-oUcCvmwm3kh08nA1U9aEnXeh8WHWzf0dvKn1bK6rIHL4QOJcTquhmbH7smFynjozsPALZnGOV0fb-TAoA-ognl5f7E_/s200/Iguana.jpeg" width="200" /></a><span style="font-size: 13.5pt;"><br />The real turning point came when I started to post my own photos of family vacations, hints of my children's accomplishments, clever commentary on current events made by other internet people. And, because I am not too photogenic, and for most of this time was physically mutilated and bald, I used pictures of rare animals or family pets for my profile. (This was surprisingly <i>not</i> confusing to my Facebook friends. Made me worry a little more about my looks, although there's no denying that I did look a little like an Iguana when my hair first started to grow back.) <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: 13.5pt;">And then I heard this story on NPR: <a href="http://onpoint.wbur.org/2012/08/20/braggarts"><span style="color: blue;">http://onpoint.wbur.org/2012/08/20/braggarts</span></a>. It is time to step back and self examine.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: 13.5pt;">I feel the urge to share what I have learned about Facebook for those of you who have either not yet slipped down this rabbit hole, or are struggling to climb out. I am thinking that this exercise could be a valuable service to others in my demographic cohort. After all, the fastest growing group of new Facebook users are women over 50. Caveat: That information is a week old, so who knows what the current trends are. Caveat #2: These instructions are inspired by my own mother who does not use a computer, and so, therefore, may be more basic than some of you may require.</span></div>
<div class="MsoNormal">
<span style="font-size: 13.5pt;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 13.5pt;"><b>Terminlogy </b></span></div>
<ul type="disc">
<li class="MsoNormal"><span style="font-size: 13.5pt;">FB: Facebook </span></li>
</ul>
<ul type="disc">
<li class="MsoNormal"><span style="font-size: 13.5pt;">PP: Profile picture </span></li>
</ul>
<ul type="disc">
<li class="MsoNormal"><span style="font-size: 13.5pt;">Friend: Someone whose name is
listed on your FB page when you "click" on the word “Friends”.
Not to be confused with a person you might want to hang out with or
call if you are lonely. May be used as either a noun (as just defined) or a verb meaning to add person's name to your friend list. </span></li>
</ul>
<ul type="circle"><ul>
<li class="MsoNormal"><span style="font-size: 13.5pt;">Click: Tap lightly on left side
of "mouse."</span></li>
<li class="MsoNormal"><span style="font-size: 13.5pt;">Mouse: Small hemispheric
contraption, usually found to the right of the computer. Only moves if
you make it move so not very frightening if you come upon it
suddenly. </span></li>
</ul>
</ul>
<ul type="disc">
<li class="MsoNormal"><span style="font-size: 13.5pt;">Unfriend: To remove a person's name from your friend list. This action may or may not be noticeable to said "friend" so I advise extreme caution when taking this action. Do so only when you intend to send a passive-agressive message of dislike. </span></li>
</ul>
<ul type="disc">
<li class="MsoNormal"><span style="font-size: 13.5pt;">Spouse/Daughter/Son/Relative of
Any Kind: See definition of “Friend” above. </span></li>
</ul>
<ul type="disc">
<li class="MsoNormal"><span style="font-size: 13.5pt;">Status: Useless information about
what a person is doing at that moment that makes you wonder why anyone,
other than one’s mother, would care. </span></li>
</ul>
<ul type="disc">
<li class="MsoNormal"><span style="font-size: 13.5pt;">Like: A "button" that
you push if you want everyone on FB to know that you approve of a status
or any other post on FB. </span></li>
</ul>
<ul type="circle"><ul>
<li class="MsoNormal"><span style="font-size: 13.5pt;">Button: A place on the computer
screen where you place your cursor and click.</span></li>
</ul>
</ul>
<ul type="disc">
<li class="MsoNormal"><span style="font-size: 13.5pt;">Post: What you do on FB. If you
don’t do this, people think you are a “stalker.” </span></li>
</ul>
<ul type="disc">
<li class="MsoNormal"><span style="font-size: 13.5pt;">Stalker: Someone who looks at FB
but does not post.</span></li>
</ul>
<ul type="disc">
<li class="MsoNormal"><span style="font-size: 13.5pt;">Wall: "Home" screen for
each FB subscriber. </span></li>
</ul>
<ul type="circle"><ul>
<li class="MsoNormal"><span style="font-size: 13.5pt;">Home: Virtual place where you
spend all your time, focus all of your attention and waste away your
life.</span></li>
<li class="MsoNormal"><span style="font-size: 13.5pt;">Home 2: Physical building where
your body receives actual sustenance and rest. Sometimes a place where
other bodies are similarly maintained, in particular those with whom you share
genetic material.</span></li>
</ul>
</ul>
<ul type="disc">
<li class="MsoNormal"><span style="font-size: 13.5pt;">Wall 2: Metaphoric term that
describes the barrier between you and all your friends and family that
results from spending too much time on FB and not enough time actually
talking to them.</span></li>
</ul>
<div>
<span style="font-size: medium;"><b>Rules</b></span></div>
<ul type="disc">
<li class="MsoNormal"><span style="font-size: 13.5pt;">Never ever comment on anything
relevant to your teenage child. </span></li>
</ul>
<ul type="circle"><ul>
<li class="MsoNormal"><span style="font-size: 13.5pt;">Do not try to make a funny
comment. </span></li>
<li class="MsoNormal"><span style="font-size: 13.5pt;">Do not "Like" a
photo. </span></li>
<li class="MsoNormal"><span style="font-size: 13.5pt;">Do not post a photo or even </span><i style="font-size: 13.5pt;">take</i><span style="font-size: 13.5pt;"> a
photo of your child. </span></li>
<li class="MsoNormal"><span style="font-size: 13.5pt;">You might as well extend this
rule to additional forms of communication including telephones, cell
phones, and physical interaction. Whatever you say or do will cause
great embarrassment, humiliation and anger. Stop trying.</span></li>
</ul>
</ul>
<ul type="disc">
<li class="MsoNormal"><span style="font-size: 13.5pt;">If an old friend that you haven't
spoken to in 20 or 30 years "friends" you, "confirm" the
request, but do NOT, under any circumstances, attempt to act friendly.
Assume that the friend merely wants to look at your wall to see how
you have aged, (I like to imagine the reaction to my Iguana PP) but has no more interest in actually connecting with you
than s/he had over the last 20-30 years.</span></li>
</ul>
<ul type="disc">
<li class="MsoNormal"><span style="font-size: 13.5pt;">When the names of friends pop up
on FB that tempt you to "friend" them. Don't give in. It will only create social pressure, angst and hurt. </span></li>
</ul>
<b><span style="font-size: 13.5pt;">Conclusion</span></b><br />
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: 13.5pt;">Stay away
from FB. If you must participate "friend" only one person - your
mother. </span></div>
<div class="MsoNormal">
<span style="font-size: 13.5pt;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 13.5pt;"><b>Disclaimer</b></span></div>
<div class="MsoNormal">
<i><span style="font-size: medium;">This piece is written from the perspective of a socially phobic, neurotic, hypocrite, who obviously does not believe much of what has been written here given what she has written here. (Stuff that only her mother would be interested in.) She begs not to be "unfriended" as a result of this blog post.</span></i></div>
<br />
<div class="MsoNormal" style="text-indent: .5in;">
<br /></div>
Amyhttp://www.blogger.com/profile/00871696019086419473noreply@blogger.com0tag:blogger.com,1999:blog-665166707405561124.post-38793096593507696452012-06-09T04:32:00.002-07:002012-06-09T04:50:57.211-07:00Still Not Dead Thanks to DFCI<div class="" style="clear: both; text-align: left;">
Hello Friends,</div>
<br />
Just in case you were beginning to wonder...I'm still kicking! Life is good. I've finished my treatment. I'm working part time. I'm exercising. I'm gardening. I'm enjoying time with family and friends...what else is there?<br />
<br />
How many times have you heard about a person with cancer (I try to avoid the phrase, "cancer victim". I don't really feel like a "victim.") saying something like, "I'm just grateful for each and every day." Well, I'm not sure I feel like that. I'm not sure that my gratitude for days has changed much over the last year and a half. I am, I suppose, more focused on finding ways to be happy every day. I'm doing a good job at that. I am happy. (That was strange. I'm not sure I have ever written those words before. Not that I haven't felt that way. I've enjoyed lots of happiness in my life. But I may not have ever said so in writing. Strange for someone who tends to overshare, at least, when writing.)<br />
<br />
Enough introspection for one day - it may detract from my happiness.<br />
<br />
So, as I mentioned, I finished my treatment. I want to share with you a thank you letter I wrote to my health care team at Dana Farber. Spread the word. They are great. And if you ever wonder which cancer organization you should donate to, donate to your local cancer research institution. It is researchers and research subjects who improve care and treatment for cancer.<br />
<br />
<div style="text-align: center;">
<span style="color: purple;"><b><u>_________________________________________________________________</u></b></span></div>
<br />
<div class="" style="clear: both; text-align: center;">
<b><br /></b></div>
<div class="" style="clear: both; text-align: center;">
<b><span style="font-size: large;">THANK YOU</span></b></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://www.dana-farber.org/Adult-Care/Treatment-and-Support/Treatment-Centers-and-Clinical-Services/Breast-Cancer-Treatment-Center.aspx" target="_blank"><img alt="" border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEif7x5ZL-KEOqLV1k8KrCc7ObUeEvpio795hv4tFZniazmZ1e-tLMFY8k46ydCuWvWLFt8Cg3JVw4VdvaY63mEfzwYNZMxGvACR7lhhyphenhyphendV6jjpOiMGpwov1fiVE1uMwAKM0bF8a5PbmCeI4/s1600/DFCI.gif" title="" /></a></div>
<br />
I have breast cancer. Invasive ductal carcinoma. HER2
positive, stage 2. I got this news on January 18, 2011. I had bi-lateral
mastectomy on February 14. I began chemotherapy in March. I finished
chemotherapy in July. I began radiation treatment a couple of weeks
later. I completed radiation in September 2011. I received
Herceptin for 12 months. I completed Herceptin on April 30, 2012. I will
take one Arimidex tablet every day for the next four years if I live that long,
and I feel pretty confident that I will, thanks to my health care and 21st
century medicine.<br />
<div class="MsoNormal">
<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Not a very original story. Health professionals at Dana
Farber can treat people like me with their eyes closed. But they don’t.
Everyone I interacted with at DFCI treated me with their eyes, their hearts,
and their minds open. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
By everyone I mean everyone: Every employee, from the
parking level to the first floor information desk, to the lab and to the 9th
floor staff. Each one of you helped me to feel safe, cheered, respected
and cared for. I frequently told my family and friends that the whole cancer
thing was nowhere near as awful as one might imagine because of these good
people. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
It isn’t easy getting to 3 or 4 medical appointments a week,
and the DFCI staff knows this like they’ve all been doing it themselves. They
did everything they could to minimize the frustration, anxiety and discomfort.
I don’t think I ever had a parking problem before any of the 60? 70? 80? appointments
I had over the last 18 months. Never did I meet an unfriendly receptionist.
Every person behind a desk would welcome me with smiles, candy and reassurance
if I looked like I needed it. I remember one day I arrived late for an
appointment. The receptionist said, “Don’t worry, sweetheart. You’re fine. It
doesn’t matter when you show up so long as you always show up.” <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I grew to almost like my time in the chemo chair. Friendly,
caring people would bring me heated blankets, snacks and stuff to read. I
would turn on the heat, turn on the massage, snuggle under the warm blankets,
eat my snack, and do my crossword puzzle. Now and then a kindly medical
professional would do what was necessary to get medicine into me. Rarely did I
feel any discomfort or fear. The time spent by nurses to prevent nausea,
headaches, chills, anxiety, adverse reactions of any kind demonstrated
that these concerns were at least as important as giving me the drugs. No one
could ever say that the staff at DFCI treats the disease and not the patient.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I don’t know how rare this kind of treatment may be. DFCI is
the only place where I have been treated for this disease. But I feel lucky and
grateful. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Thank you Hal for designing my treatment and for
respecting me and my family enough to explain the research behind the
treatments I received. Thank you Carla for taking every step possible to
minimize my discomfort and for distracting me with stories of life with young
children. Thank you Anne, Jade, Maryann, Amy and every other nurse who
struggled to tap my thin, “valvy” veins with the least amount of discomfort.
Thank you Drs. Golshan and Hergrueter for looking for and removing as
much of the cancer as could be found, while minimizing pain and disfigurement
to the extent possible. Thank you Dr. Harris for explaining the value of
radiation based on all of the characteristics of my disease, and for designing
a treatment that took all that information into consideration. Thank you
Varian machine staff for your efficiency, flexibility and good taste in
music. Thank you cleaning staff for ensuring the restrooms, kitchens,
hallways, examination rooms are clean, germ free and safe. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
And thank you to administrators and decision makers who
decided to invest in services that were so precious to me during the last year
and a half. Services such as parking spots on the valet floors for radiation
patients, chemo chairs with heat and massage functions, push carts full of
snacks and books, comforts for the poor people who accompany the cancer patients.
And thank you to the volunteers throughout the hospital offering support,
advice and directions. What kindness, thoughtfulness and imagination went into
these comforts.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Thank you, finally, to all of the research subjects and
researchers who help advance the science of cancer treatment.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Although my most fervent wish is to never see you again,
when my anxieties collect and begin to ooze through my worn out veins, I am
soothed by the thought that you all are there at Dana Farber ready to make me
feel better.<o:p></o:p></div>Amyhttp://www.blogger.com/profile/00871696019086419473noreply@blogger.com0tag:blogger.com,1999:blog-665166707405561124.post-88904390365012190582012-04-15T16:12:00.001-07:002012-04-15T16:41:32.187-07:00Farming UpdateWell, it has been a while since I wrote to you all. Busy times at Stone Silo Farm. It's spring so outdoor chores begin to compete with work, exercise and medical appointments. It's all good, though. Well, it's all good for us. Things aren't so good for the chickens. The chickens have become a big part of our lives this year and so I feel that it is important to let you all know about life with chickens.<br />
<br />
My husband likes the "free range" idea. By his definition, "free range" means "free." He lets them out of the coop, and out of the chicken run where there are no fences, no walls, no roofs, and no protection from the hawks, the dog, the fox and the neighbors. This arrangement is not ideal. They dig up the yard and the garden, and poop everywhere, and pretty much make huge nuisances of themselves. Meanwhile they tempt all those listed above to eat them for lunch. Except the genius dog who has learned to coexist with the chickens unless they flutter nervously which she believes warrants a little intimidation.<br />
<br />
One day recently the husband heard some squawking in the yard, and when he came to check things out, he discovered a hawk with one talon holding down a chicken while it plucked out its tail feathers. Ah the brutal circle of life. The husband, however, managed to save his bird by scaring off the hawk.<br />
<br />
The result?<br />
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<br />
Half a chicken. I call her "Shorty". The husband calls her "<a href="http://en.wikipedia.org/wiki/John_and_Lorena_Bobbitt"><b>Bobbitt</b></a>."<br />
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<br />
Here you can compare a chicken <i>with</i> a backside next to one without.<br />
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<br />
Just in case you would like to examine this tragedy from another angle.<br />
<br />
And Shorty isn't the only one suffering on the farm. <br />
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This sorry bit of avian life we call Patches. She's the runt and is what one might refer to as "hen pecked". Little did I know that when my kids used to whine and nag this is the image that would have come to mind had we begun chicken farming sooner.<br />
<br />
The good news is that all of these handicaps do nothing to slow down egg production.<br />
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<br />
<br />
Yes, my friends, we are a long way from the sad, little egg days of <a href="http://herpositive.blogspot.com/2011/10/farming-update.html"><b>yore</b></a>. Pretty soon I will be starting a blog about cardiovascular illness. Stop by if you want eggs.<br />
<br />
The honey business is also doing well. <br />
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<br />
Don't stop by if you want honey. We're very stingy about the honey.<br />
<br />
Some of you might be wondering what all this has to do with breast cancer. Absolutely nothing, I am happy to say.<br />
<br />
Wishing you a honey-filled spring.<br />
<br />
<br />Amyhttp://www.blogger.com/profile/00871696019086419473noreply@blogger.com0tag:blogger.com,1999:blog-665166707405561124.post-12222859043167315252012-02-26T15:03:00.000-08:002012-02-26T15:03:00.735-08:00Speaking, Skiing and InflatingHave I mentioned before that I prefer to write than talk? I feel safer and more confident when I write than when I talk. I am one of the decreasing number of people in the world who loves email. I would much rather write an email than make a phone call. And IMing and texting are miraculous accommodations for the socially phobic, introverts of the world. <br /><br />
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Fortunately, my work requires more writing than talking. On occasion, however, I am expected to communicate orally using a microphone in front of people who are hoping that useful information comes out of my mouth. This is like requiring an agoraphobic to take public transportation in Mumbai. In such a setting I become anxious and inarticulate, if not nearly mute. To deal with this problem, I write down every word I plan to utter before an audience of greater than one, and commit it to memory. This strategy becomes a bit tricky if there is any Q and A involved. <br />
<br />
Anyway, I am beginning to think that this is why I continue writing this blog. It reduces the need for talking. So if you are pissed that I haven't called in a while, you now know why.<br />
<br />
If after this confession you are still interested..all is well with me. I just returned from skiing in Utah with my sisters and mother. I had been concerned that my achy joints would ruin this trip, but I am happy to report that they did not. To prepare my joints for skiing I spent more time at the health club. I think it worked. I had no trouble skiing every day of the trip.<br />
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<br />In fact, I am now spending about 15 hours a week exercising. As previously mentioned, exercise may reduce my risk of recurrence. I hope this idea doesn't turn me into some kind of compulsive exercise freak who can't live a day without sweat and muscle pain. So far, however, I think I have it under control. Moreover, I feel stronger, more flexible and cheerier. The only disappointment is that it does not seem to improve my figure. That is mostly because I no longer have a figure, but also because I eat like a horse. I eat like a herd of horses. All that stupid exercise makes me voracious. If you know of a healthy way to suppress appetite, let me know.<br />
<br />
In other, cancer news, I recently learned the date of my last Herceptin infusion - April 30 - and none too soon. The difficulty du jour is finding a vein to pump the drug into. It becomes harder every visit. They usually have to puncture me three or four times before they find one that works. It hurts like hell because with each puncture they dig around to see if they can find the right spot for pumping. When it doesn't work the drug inflates my arm like a water balloon. Just describing it here is making me sick. I'm sure you're not loving the image either.<br />
<br />
I hope you are all doing well, having some fun and getting your exercise. And please don't hesitate to write... or call. xoxoxoxAmyhttp://www.blogger.com/profile/00871696019086419473noreply@blogger.com0tag:blogger.com,1999:blog-665166707405561124.post-15036544445911948622012-01-16T15:05:00.000-08:002012-01-16T15:06:42.267-08:00Exercise Program for Sickly Seniors - Part 2<div class="separator" style="clear: both; text-align: center;">
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<br />
Some of you might remember the <b><a href="http://herpositive.blogspot.com/2011/10/happy-autumn-my-friends.html">yoga post</a></b>? Well the exercise classes for the disabled saga continues. We have moved on from yoga for elderly cancer patients to water aerobics for the almost dead. So I've joined a health club. This is a way of spending money that I have never really understood.<br />
<br />
Spend thousands of dollars so you can get in your car, drive twenty minutes, get on a machine, run/bike/climb stairs to nowhere for 45 minutes, take a shower in a germ-ridden, slimy-tiled room worrying the whole time that someone is going to stick their sweaty head in behind your brownish rubber curtain and scream at the sight of the freak that you have become. Then jog back to the car with your wet hair before it gets too crunchy in the frigid air, drive another twenty minutes, and two hours later you've finished your daily exercise.<br />
<br />
What kind of sense does that make, when, for no money at all, you can walk out your door, run for 45 minutes where the scenery changes with every step until you're home and done? And, if you want, you can shower without fear of frightening strangers who come upon you unexpectedly (with the exception of your son who is very afraid of seeing anything but your face, and even then seems pretty disturbed.)<br />
<br />
But this is a new world I live in and I've been told that exercise in the water, where all my aching joints are well supported, will be a wonderful thing. So, a few times a week, I find myself standing in a pool, up to my neck in lukewarm, chloriney water watching a fit, young beauty queen dance gracefully outside of the water oblivious to the near deadly difficulty of seniors attempting to swing their droopy booties under the water.<br />
<br />
I will not forget the feeling of walking into the pool area that first day and seeing so many gray, withered heads floating on the water's surface, like so many time-worn mooring buoys, knowing that my head would fit right in. When did I become this person? It seems that it wasn't so long ago that I could convince myself that I still had a tiny shred of mojo left, but as I approached that pool in my navy blue speedo, on top of lumpy legs and under a raggedy head of hair, I realized that the mojo is nomo.<br />
<br />
As with any class I have ever taken, there are those who float around in the back of the class, not paying much attention, chatting among themselves - and then there is me. Front, center and struggling mightily (with disproportionate success) to do everything I am told. "Kick your legs", "<i>sprint</i> through the water," "sprint backwards" (?), "don't use your arms," "don't use your legs" (if I was not underwater when this command was barely heard, I might have raised my hand to comment that when immersed in water one must move arms or legs, and preferable both, to derive benefit from the program. But fortunately, just before several of us sunk for good, the dancing sprite on the pool's edge sung out a new command to turn over on our backs and "do the can can".)<br />
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All the while, the terrible soundtrack of the nineteen seventies is pounding away in the background reminding us all of how long ago it was that we had danced to these tunes on dry land, in the beer sodden fraternities and student centers of our youth. What could possibly be more depressing? Lying in bed, in pain, and unable to exercise, I suppose.<br />
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Last one in will rot faster than the rest of us!Amyhttp://www.blogger.com/profile/00871696019086419473noreply@blogger.com1tag:blogger.com,1999:blog-665166707405561124.post-84395490697242228612011-12-31T08:17:00.000-08:002012-01-02T05:55:45.838-08:00Bye Lil<div class="separator" style="clear: both; text-align: center;">
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Yesterday we said good bye to our old family dog. We are all very sad. She was an incredibly neurotic mutt with enough Border Collie in her to spend most of her time as a puppy herding the little kids by biting their heels. She would run switchbacks, bark maniacally, growl and chomp, and we loved her. Well, some of us didn't love her so much. My niece, for example, who was one of the smallest, daintiest little babies ever born, once found her head inside Lily's mouth. It was one of the funniest things I have ever seen, which may sound a little harsh, but I was pretty sure that Lily would not close her jaw and chop off Claire's head. My mother hated Lily too. Lily always knew which one in the crowd she could most effectively annoy. She would immediately find my mom, stick her nose in mom's crotch and mom would struggle to maneuver around the furry, matted obstacle.<br />
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Lily was so annoying. She barked incessantly. She smelled. Her fur was the thickest covering of any animal that I have ever felt and was usually matted, sticky with pine sap, and knotted with burrs, twigs and leaves. She shed great balls of oily, sticky fur. She had many nervous habits some of which in her early years required that she wear the cone, which meant she scraped everyone's legs, knocked stuff over and looked sillier than ever.<br />
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In recent years, Lil moved more slowly, had trouble sitting down and standing up, but once she was up, she was her old self, barking away, stuffing her nose in your crotch, and begging for a butt massage.<br />
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The great thing about Lilabether, as I sometimes called her, was her dignity and doggy arrogance. I will never forget a day, when our other dog, Pepper, was a puppy. We were teaching Pepper how to fetch. We would throw the ball, Pepper would retrieve it, and if she brought it back to us we would go nuts with praise. Lily was watching us with an air of great superiority and boredom. Finally, after many throws to Pepper, Lily got up, retrieved the ball, brought it back, dropped it at our feet, and sat down again. She had never retrieved a toy before that day and never did so again. She merely wanted to demonstrate what a stupid, amateur trick it was that the silly new puppy was performing.<br />
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I bought Lily shortly after my husband and I had separated. The weekends that the kids spent with him were so terribly lonely for me that I decided a dog might help to fill the time and add some noise to the quiet house. She was such a small. white fluff of a thing. I would carry her around, tucked under my arm, while she nibbled at my hand until it was raw. At puppy kindergarten, she was so out of control, with biting and barking and squirming, that I remember crying with embarrassment during one class. My vet would often advise me to put her on Prozac, but I never did.<br />
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In her final months she was deaf and barked even more frequently, often in the middle of the night for no reason we could ever figure out. My husband or I would drag ourselves downstairs, reminded of the days when our children were infants, and groggily try to figure out how to shut her up. We would drag ourselves back upstairs, muttering murderous epithets with every step. We would fantasize about getting a gun to kill the squirrels, or the bunnies, or the sparrows....or Lily. (For the record, we never fantasized about murdering our babies.)<br />
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My kids learned to love Lily with a kind of fierce loyalty. She was such a pain in the ass, and not the kind of dog that people would find lovable, but the kids were always loyal and protective and affectionate with her. They objected when we talked about murdering her.<br />
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Then came the day when we murdered her. She seemed to be having trouble breathing. Each breath labored and painful sounding, she was foaming at the mouth. She was sad and weak and miserable. We had been to the vet a couple of days before and the vet warned us that we should be prepared to say good bye. We thought we were prepared. We brought her in and said good bye. My husband stayed with her for the injection. I returned to the car. We are so very, very sad. She was such a dignified, intelligent, irritating presence in our home. She leaves an enormous hole.<br />
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Pepper, the now grown puppy, hasn't reacted too much. I let her out this morning after breakfast. Lily used to eat her breakfast more slowly than Pepper. So Pepper would go outside and sit on the porch waiting for Lily to join her. Pepper liked to follow Lily around the yard to eat her poop. Pepper didn't wait for Lil this morning. She just walked off the porch and sniffed around slowly and thoughtfully. I do not know what she is thinking.<br />
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Good bye, Lil. We miss you, we love you, and we thank you for much happiness and laughter.<br />
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<br />Amyhttp://www.blogger.com/profile/00871696019086419473noreply@blogger.com0tag:blogger.com,1999:blog-665166707405561124.post-88243562356637270432011-12-29T14:49:00.000-08:002011-12-30T09:09:19.001-08:00Christmas #1New season, new year, new look. The winter scene pictured in my new background struck me as soothing, which is helpful at this time of year.<br />
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On the morning of January 2, 2011 I was lying in bed feeling guilty about all of the eating and drinking I had done through the holidays. I thought about how such a lifestyle can increase cancer risk, and I found a lump in my right breast.<br />
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You know how cancer statistics refer to the five-year survival rate? I've been wondering lately from what point do you start counting the years. The day you find the lump? The day you estimate that the lump was born? The day of diagnosis? The day you start treatment? The day you finish treatment? Am I surviving right now? I have a friend who refers to post-cancer diagnosis as a period of "thriving".<br />
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<b>To survive</b>:<br />
verb (used without object)<br />
1. to remain alive after the death of someone, the cessation of something, or the occurrence of some event; continue to live: Few survived after the holocaust.<br />
2. to remain or continue in existence or use: Ancient farming methods still survive in the Middle East.<br />
3. to get along or remain healthy, happy, and unaffected in spite of some occurrence: She's surviving after the divorce.<br />
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verb (used with object)<br />
4. to continue to live or exist after the death, cessation, or occurrence of: His wife survived him. He survived the operation.<br />
5. to endure or live through (an affliction, adversity, misery,etc.): She's survived two divorces.<br />
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<b>To Thrive</b>:<br />
verb (used without object)<br />
1. to prosper; be fortunate or successful.<br />
2. to grow or develop vigorously; flourish: The children thrived in the country.<br />
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None of these definitions seems exactly right, but if I had to pick one that best suits my situation, I might go with "survive" definition #2...Amy remains or continues in existence or use. I guess I have been surviving for over fifty years.<br />
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Well, that's not too helpful.<br />
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I hope everyone had joyful holidays. Mine were fairly joyful. The highlight was seeing twenty members of my family sitting around a single table in my own kitchen each with a plate of cold food in front of them. I was wishing that the food was hot, but the only way that could have happened is if there had been fewer people there taking turns loading up their plates. The cold food was a fair price to pay for a super crowded Christmas dinner table.<br />
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I am now thinking about our New Year's celebration. I guess it will be good to finish 2011 and start 2012. 2011 wasn't so good, but it wasn't so bad either. I learned a lot: about how to be a good cancer patient, about setting priorities, about how I am not alone and that I have dear friends and family members who are willing to make sacrifices just to help me out. I learned that I have lots more good luck than bad. I learned that you can lose members of your family, parts of your body, a lot of your energy...and still find stuff to laugh about. I learned to be even more grateful than ever for money and education which are mighty helpful things to have when you are sick, and that probably the most useful thing I could do with the rest of my life is to help other people who don't have those resources. <br />
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My New Year's plans include dear friends, precious family, food and drink, though in smaller amounts than in years' past. I will celebrate having earned some wisdom for living a full and happy, second(?) year of survival.<br />
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Sending you all lots of love and wishing you a peaceful, joyful and healthful New Year.<br />
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<br />Amyhttp://www.blogger.com/profile/00871696019086419473noreply@blogger.com0tag:blogger.com,1999:blog-665166707405561124.post-73050915739293870692011-12-10T05:04:00.001-08:002011-12-15T05:39:13.246-08:00Holiday Blues and Returning Daughter<div class="separator" style="clear: both; text-align: center;">
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<span class="Apple-style-span" style="font-family: inherit;">Hey Friends, </span><br />
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Everyone who is feeling overwhelmed by holidays, family, work, life, and death raise your hand. I knew it. All of you. And because I am the one doing the typing, I am going to tell you all about my holiday stresses. There was Thanksgiving. Lots of family - minus one major member, the daughter - around for a few days. Then my mom's sister died and we went to upper New York to visit with family. Then a couple of weeks of more intense work than usual leading up to a conference in DC hosted by my organization. And throughout there have been many hours of physical therapy, doctor appointments and driving back and forth from those things. Whine, whine, whine.<br />
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Maybe because I've been busier and taking on more stuff, I have been having trouble sleeping lately. Things on my mind:<br />
<ul>
<li><span class="Apple-style-span" style="font-family: inherit;">Recurrence: I can't<span class="Apple-style-span" style="font-family: inherit;"> help it. I keep looking at the data. Scary. When I am alone I spend a mentally-ill amount of time researching this and I am alone this whole week so...</span></span></li>
<li><span class="Apple-style-span" style="font-family: inherit;"><span class="Apple-style-span" style="font-family: inherit;"><span class="Apple-style-span" style="font-family: inherit;">Twitter: twitter works on the principle of egomania. I hate to break it to you, but for the most part there is nothing interesting about your 140-character thoughts, so keep them to yourself. (I know what you're thinking - people in glass houses...)</span> On the other hand I get it for marketing purposes or important news. Things like, "a million copies of my new book are now in books stores all over the world." Or, "doctors discover a cure for cancer." Things like that people want to know about immediately. But things like, "what you are is what you have been. what you'll be is what you do now" just isn't. [ This paragraph uses 608 characters.]</span></span></li>
<li><span class="Apple-style-span" style="font-family: inherit;">Current Health: On the decline. This horrible medicine I am taking, arimidex (which is an aromatase inhibtor that works by reducing the amount of estroge<span class="Apple-style-span" style="font-family: inherit;">n my body makes) </span></span><span class="Apple-style-span" style="background-color: white; font-family: inherit; font-size: 15px; line-height: 24px;">is wreaking havoc on my joints. When I get out of bed or out of a seat after sitting for a while, its takes a painful minute or two to straighten my back, legs, and shoulders. This I have gotten used to. However, in recent days my joint pain is interfering with sleep and exercise. My knees are up in arms,</span><span class="Apple-style-span" style="background-color: white; font-size: 15px; line-height: 24px;"><span class="Apple-style-span" style="font-family: inherit;"> so to speak, when it comes to running, and even a long walk can cripple me for the </span>rest of the day. When I think that I am to be on this drug for 5 years, I feel discouraged...until I remember that I should feel lucky if I am around long enough to take the stinkin' drug for 5 years...</span></li>
</ul>
<span class="Apple-style-span" style="font-family: inherit;"><span class="Apple-style-span" style="background-color: white; font-size: 15px; line-height: 24px;">So, as you can see, I am feeling a little sorry for myself this holiday season. BUT! My precious daughter who has been in Ghana since August 26 is coming home this Wednesday. I cannot believe that I lived through almost 4 months of not seeing my own daughter! My daughter! My heart, my soul, my blood, my lungs, my genes (poor dear)...my darling, my sugar cookie, my pickle brain, my chicken bosom (please see </span><a href="http://herpositive.blogspot.com/2011/02/about-this-blog.html" style="background-color: white; font-size: 15px; line-height: 24px;"><b>post #1</b></a><span class="Apple-style-span" style="background-color: white; font-size: 15px; line-height: 24px;">...really, is this so much worse than most twitter posts out there?) </span></span><br />
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<span class="Apple-style-span" style="font-family: inherit;"><span class="Apple-style-span" style="font-size: 15px; line-height: 24px;">Right now my daughter is traveling with her papa around Ghana. They are with a professional guide, but my lucky husband is also enjoying the novel experience of being <i>guided</i> by his own daughter. And not just any daughter, but a daughter who still uses a GPS to get around the town she grew up in. There she is, resident in a rough and tumble African country, </span><span class="Apple-style-span" style="font-size: 15px; line-height: 24px;">showing her father the sights.</span><span class="Apple-style-span" style="font-size: 15px; line-height: 24px;"> How did that happen? My collicky, premie baby, 4.5 pounds on entering this world, nevertheless scored a 10 on the Apgar scale. </span></span><span class="Apple-style-span" style="font-size: 15px; line-height: 24px;">She's been scoring a 10, in spite of herself, ever since.</span><span class="Apple-style-span" style="font-size: 15px; line-height: 24px;"> When recalling her infancy I like to say that</span><span class="Apple-style-span" style="font-size: 15px; line-height: 24px;"> if she was awake she was whaling. As a teen, if she was awake she was finding fault with herself. As a young adult, she is mostly just awake, struggling mightily to absorb, assimilate and write about all that she learns every day. Such a beautiful, difficult baby. Such a beautiful, challenging 21 year old who just completed a 70-page paper about the cultural and political significance of the Ghana Dance Ensemble, guiding her father through a colorful, chaotic, and lush country that appears, from a distance, to vibrate with music and stomping feet. What mother would not feel cheered by the prospect of a reunion with such a daughter?</span><br />
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<br /></div>Amyhttp://www.blogger.com/profile/00871696019086419473noreply@blogger.com0tag:blogger.com,1999:blog-665166707405561124.post-4451673301153935032011-11-23T09:51:00.001-08:002011-11-23T10:16:31.012-08:00Thanksgiving #1<div class="separator" style="clear: both; text-align: center;">
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This way we can count how many Thanksgivings I have post diagnosis. A little too morbid for this rainy Thanksgiving eve? Not really. Each one I have is further proof of all that there is to be grateful for. I guess that goes for all of us.<br />
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Things I am grateful for in no particular order: husband, daughter, son, mommy, sisters, dogs, you, chickens, old timey music and its progeny, turkey, nieces, nephews, sweet potatoes, summer tomatoes, fall apples, apple, cherry and maple trees, horse manure, fireplaces, fleece, reggae, wine, chemotherapy, oncologists, Charles Dickens, nuts, good fiction, the <i>Sunday Times</i>, my legs when they take me on long walks in the woods, pasta, space heaters, washing machines, photocopy machines, Skype, computers, WBUR, my hair, my teeth, money, airplanes, mountain views, the first amendment, sleep, mocha chip ice cream, clean water, people who make me laugh.<br />
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That's all that occurs to me at the moment. Please let me know your things.<br />
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Wishing you a delicious, cozy Thanksgiving with people you love.Amyhttp://www.blogger.com/profile/00871696019086419473noreply@blogger.com1tag:blogger.com,1999:blog-665166707405561124.post-63507575913726489332011-11-19T05:24:00.001-08:002011-11-19T08:49:51.178-08:00Poll Results and Health Update<div class="separator" style="clear: both; text-align: center;">
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Well. my friends, I am sure that you have been in terrible suspense all week wondering how I will shape my future drinking habits in light of our poll and recent studies. The results are interesting:<br />
<ul>
<li>8 of you voted</li>
<li>1 person voted for 0 alcohol consumption</li>
<li>the others were split on how many drink per week I should have, and</li>
<li>3 support the use of illegal substances while 5 do not</li>
</ul>
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So here is the analysis. </div>
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<ul>
<li>the article was viewed 62 times. </li>
<li>13% of the viewers thought it worth voting. </li>
<li>87% could give a shit about how much I drink</li>
<li>1 person is really concerned about my well-being (or interpreted another way, one person wants to see me miserable)</li>
<li>a healthy majority (62%) is opposed to illegal substances</li>
</ul>
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So, there you have it. I continue to have insufficient justification for altering my habits. YAYYYY!!!!!! Man, I'm ready for a drunken celebration.</div>
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Ok. Enough of that silliness. In real life, things are okay. I've been dealing with what they call "lymphatic cording" which is caused by having no lymph nodes under my right arm and results in an uncomfortable and revolting feeling of tightness and palpable "cords" under my skin that hurt and reduce my range of motion. I've been going to physical therapy twice a week to deal with this issue which is time consuming and somewhat agonizing. My physical therapists joke when they see me, "time to play the guitar!" I feel nauseous just thinking about it. I am seeing my surgeon next week to make sure that it isn't the next sign of my premature demise. </div>
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In addition to this development, I am back to work to an increasingly stressful degree. Perhaps I should do another poll on the topic of my career. I think that there is real possibility that work causes cancer. Since the alcohol poll I've been thinking a lot about all the other <a href="http://www.cancer.org/Cancer/CancerCauses/OtherCarcinogens/GeneralInformationaboutCarcinogens/known-and-probable-human-carcinogens"><b>things that cause cancer</b></a>:</div>
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<ul>
<li>smoking</li>
<li>plastic containers</li>
<li>water bottles</li>
<li>celery</li>
<li>the stuff that makes paper towels white</li>
<li>birth control pills</li>
<li>pesticides</li>
<li>pollution</li>
<li>radon</li>
<li>chemotherapy</li>
<li>radiation</li>
<li>toilet bowl cleaners</li>
<li>Tide</li>
<li>Crest</li>
<li>flea collars</li>
<li>carpets</li>
</ul>
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and on and on.<br />
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</div>Amyhttp://www.blogger.com/profile/00871696019086419473noreply@blogger.com1tag:blogger.com,1999:blog-665166707405561124.post-38569842514311525352011-11-06T15:42:00.000-08:002011-11-13T07:14:43.385-08:00Adult with Breast Cancer Risk Behavior Survey<div class="separator" style="clear: both; text-align: center;">
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I am very sad that <a href="http://jama.ama-assn.org/content/306/17/1884.abstract?sid=93113e2d-b03f-4aba-adb7-13657ab2dbcf"><b>drinking alcohol causes cancer</b></a>. I really like drinking alcohol. Even when I hate the taste, I always love the warm feeling of comfort and well being that it brings. The latest study shows that even as few as four drink a week may increase your risk of getting breast cancer. And I'm not talking vodka martinis, my friends. I'm talking vodka martinis AND that wimpy glass of chardonnay that we middle-aged suburban ladies are so fond of, AND everything in between.<br />
<br />
I do not believe that I am alcoholic for a number of reasons:<br />
<ul>
<li>I never have a drink before 5:00 PM...yea, yea, yea, I've heard the joke...east coast time </li>
<li>I never drink alone</li>
<li>I mostly confine my drinking to Friday and Saturday nights with a group of friends</li>
<li>I usually do not drink more that 2 or 3 glasses of wine in an evening</li>
<li>I do not see my aggressive efforts to get that group of friends together religiously every freakin' Friday and Saturday nights as cause for concern</li>
</ul>
<div>
So I spend a lot of time considering the impact of this bad news on my risk of recurrence, or more candidly, on my risk of dying within the next couple of years. I think that I have been aware of studies that indicated that there is an association between breast cancer and alcohol consumption for at least the last ten years. I never did much in response to this knowledge except feel guilty every time I had a drink. In fact, it was my guilt about drinking over the holidays that inspired me to do a punishing breast self exam on January 2, 2011 that got this blog started. </div>
<div>
<br /></div>
<div>
So it's no surprise that I am certain I got breast cancer from alcohol consumption. You would think that this theory would put the kibosh on drinking, and through chemotherapy it did, mostly because I couldn't stand the taste of it then. Sadly, once I finished chemotherapy, my taste for alcohol returned. </div>
<div>
<br /></div>
<div>
<span class="Apple-style-span" style="font-family: inherit;">So I thought it might help to analyze here, in this public place, my risk of recurrence in connection with my alcohol consumption. A fairly pessimistic estimate, I think, of my risk of recurrence is about 20% (my doctor tells me it is more like 8%, but I think he's just trying to cheer me up.) According to the latest <a href="http://jama.ama-assn.org/content/306/17/1884.abstract"><b>study</b></a>, d<span class="Apple-style-span" style="background-color: white; line-height: 18px;">rinking an average of 10.0 to 19.9 g of alcohol per day (6 to 12 drinks a week) results in a 22% increased risk</span><span class="Apple-style-span" style="background-color: white; line-height: 18px;"> of developing breast cancer. Although my average consumption is lower than that, I will continue with the worst case scenario approach. So adding the additional risk of .044 brings my personal risk of recurrence up to about 24%. So what do you think? Check out the new poll on the right. A couple of additional considerations to keep in mind as you place your votes:</span></span><br />
<ul>
<li><span class="Apple-style-span" style="background-color: white; line-height: 18px;">there is no evidence yet that discontinuing alcohol consumption </span><i style="background-color: white; line-height: 18px;">lowers</i><span class="Apple-style-span" style="background-color: white; line-height: 18px;"> risk</span></li>
<li><span class="Apple-style-span" style="background-color: white; line-height: 18px;">if I can't drink, life isn't worth living</span></li>
<li><span class="Apple-style-span" style="background-color: white; line-height: 18px;">the anxiety that I feel with each drink might increase my risk of recurrence</span></li>
<li><span class="Apple-style-span" style="background-color: white; line-height: 18px;">I am NOT an alcoholic </span></li>
</ul>
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<span class="Apple-style-span" style="background-color: white; font-family: arial, sans-serif; font-size: 14px; line-height: 18px;"><br /></span><br />
<span class="Apple-style-span" style="font-family: arial, sans-serif;"><span class="Apple-style-span" style="font-size: 15px; line-height: 18px;"><br /></span></span></div>Amyhttp://www.blogger.com/profile/00871696019086419473noreply@blogger.com0tag:blogger.com,1999:blog-665166707405561124.post-4918385418596730672011-10-16T07:55:00.000-07:002011-10-16T07:57:34.346-07:00Autumn YogaHappy Autumn, my friends. I've already written about changing seasons and their nostalgic associations so I won't do that again, but wanted to point out that I've selected a new background for the blog to celebrate the season. Too clever, I know.<br />
<br />
So I thought I would give you a sense of what a yoga class with cancer patients is like. I used to like doing "hot yoga" which is basically fast yoga in a room heated to about 98 degrees. I was the least skilled at it, but it was so efficient. I got the benefit of yogic breathing and stretching in addition to the "cardio" that came from trying to keep up with the pace, and mimicking positions that hurt like hell and couldn't possibly have been good for me. But when I was in "downward dog", the resting position, I could see the sweat drip on the mat from body parts that I never knew could excrete sweat. Gross but gratifying.<br />
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<br />
Yoga with cancer patients is a different experience. I arrive at class five minutes late. No problem. The ladies (it is all ladies - with breast cancer) are still signing in, pulling out mats, strolling back and forth to the bathroom, the water fountain. Fifteen minutes after the class was scheduled to start the group is lined up, standing on their mats facing the instructor. The instructor talks for 10 minutes about the importance of breathing. The instructor tells us to swing our arms around our bodies to enjoy the "stretch" that comes with the slightest twist of the torso. Someone farts. We are instructed to pull up a chair, have a seat, breeaaaatttthhhhh. Stand up, grip the back of the chair, make sure we are well balanced, then (this is the climax of the class) lean over to "stretch" our hamstrings. Someone farts.<br />
<br />
Someone asks, "can you write down these steps so that I can do them at home?" Someone else says, "what a good idea! I only do this "exercise" in class. I should really try to do it more often." Someone farts.<br />
<br />
Then the following conversation takes place:<br />
<br />
"My daughter-in-law has been doing yoga for years, and she looks fabulous."<br />
"Oh, is that the daughter with the twins?"<br />
"Yes. I spent the afternoon with them yesterday. They are too funny."<br />
"Did I tell you? My son's wife is due in December!"<br />
"You must be so excited."<br />
"Oh, I am. I hope I live long enough to meet the baby."<br />
<br />
To those of us still bent over our chairs, the instructor says, "stand up straight and swing the arms to release the muscles, and breeaaaath." "Now it is time to lie down on our mats. Raise the knees and breeeeaaaaath." Relax your toes, relax your ankles (huh?), relax your knees, relax your buttocks, relax your pelvis (once again, huh?), relax your lower back, your stomach, your shoulders, your neck (you'll note one body part we needn't bother relaxing, since for most of us that body part is in a landfill somewhere).<br />
<br />
Loud snoring is heard from the back of the room. Someone farts.<br />
<br />
<br />Amyhttp://www.blogger.com/profile/00871696019086419473noreply@blogger.com0tag:blogger.com,1999:blog-665166707405561124.post-1124748156396694752011-10-11T15:06:00.000-07:002011-10-11T15:06:58.910-07:00Farming UpdateDear Blogees,<br />
<br />
BIG NEWS ON THE FARM!<br />
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Yes my friends, the hens have blessed us with...an egg. Just look at that thing! Is that beautiful or what! And for a first try it ain't too shabby. The picture below gives you some perspective:<br />
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<br />
Our is the little one on the end. Stop laughing! Those other, stinky, commercial ones, (though organic, free range, grain fed and whatever) are <i>Extra Large</i>. I would say that our egg would weigh in as Regular? Medium? Who knows. But that is one nice egg, you've got to admit. Check out the artful little speckles on one end.<br />
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There's just one problem. What should we do with it? I've got zero interest in eating that thing. I know where it came from and it's not a pretty place.<br />
<br />
The husband has a web cam in the coop and he knew that the girls were getting close. So we both spent more time than we should have today checking out the goings on in the coop from our desks. I swear, we saw that girl sitting in her little box (lower left), prepare her little nest, and squat that thing out.<br />
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We are very proud egg guardians. I am especially proud of the husband who put in an inordinate amount of labor, love, and money to deliver that egg. When you think about it, that is one precious egg. (I'll have to google cryonics for chicken eggs...) Those birds better get busy if they want to even begin paying us back.<br />
<br />
On another matter. I apologize for my last post. I "published" it by accident, unfinished, unedited, un-illustrated. But I guess it doesn't matter among friends.<br />
<br />
Be well.<br />
Love, AmyAmyhttp://www.blogger.com/profile/00871696019086419473noreply@blogger.com1tag:blogger.com,1999:blog-665166707405561124.post-6417046090130793492011-10-08T06:56:00.001-07:002011-10-08T07:40:30.822-07:00Still HereYes, my friends. I ain't dead yet. I realize it's only been a week or so since my last post, but don't forget that in addition to cancer, there are buses that could run me over, criminals who might slit my throat, snakes that if they came too close could give me a heart attack, and all kinds of other dangers out there that could knock me off, or you off, for that matter.<br />
<br />
Don't mean to bring you down. I am feeling rather cheerful this morning, really. The annual physical went okay yesterday, although the suggestions for additional medical consultations could pretty much fill all my time: dermatologist, bone density, genetic testing, questions for radiologist, questions for oncologist, future appointments with her. Add to that all of the consultations that will be required for exploring and possibly implementing breast reconstruction...you begin to wonder about quality of life after cancer diagnosis. Maybe I <i>should</i> take a walk across the Mass Pike.<br />
<br />
Still sounding a bit negative, am I? Okay. This time I will really try. I am looking forward to the day. It is Saturday. The dogs let me sleep in until 7:30. I don't have to see any medical professionals today. The sun is shining. I am looking forward to a fun evening out with the husband. Maybe there's an egg in the chicken coop. My plan for the day is to rip out all of the withering vegetable plants from the garden which will make it look tidy and fertile. (Sometimes I prefer a garden that has nothing in it, to one that is filled with messy, dirty plants.) Tomorrow, good friends are coming to visit.<br />
<br />
<br />
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<br />Amyhttp://www.blogger.com/profile/00871696019086419473noreply@blogger.com1tag:blogger.com,1999:blog-665166707405561124.post-37064033350511113362011-09-28T14:48:00.000-07:002011-09-28T14:50:29.534-07:00Phase IV - Life<div class="separator" style="clear: both; text-align: center;">
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Dear Friends,<br />
<br />
Last Friday was my last day of radiation. Another milestone passed. This week I have no doctors' appointments. I can't say that my feeling is one of pure joy since there is plenty to worry about if I wanted to. For the most part I have been successful in not focusing on the uncertainty and the 10% chance that there are still some devil cells hiding out, regrouping and steeling themselves for the slaughter. But now that I am not receiving very frequent treatment it may be harder to push those thoughts away. On the other hand, every three weeks for the next seven or eight months I will receive a mini infusion of chemotherapy, and every day for the next five years I will take an oral form of chemotherapy. I will also see my oncologist every six weeks. So my treatment isn't exactly over, which is some comfort.<br />
<br />
The one thing that doesn't happen with this cancer is regular CAT scans - at least at this stage. This is a relief. I guess they figure that no good will come from discovering renegade tumors after all this treatment. If those nasty, little cells were able to survive eight months of chemo blasting, we might as well give up since no amount of early detection will save me.<br />
<br />
I have my annual physical next week. Remember the jealous internist who was sad about missing all the cancer drama? Well she's making me come in the first week of October. I know it is silly, but I am terrified of that appointment. I am sure she will find a new cancer threat to worry about. Cancer, cancer, cancer. Every health professional on the planet is so eager to find cancer: the internist looks for lumps and tests your blood hoping to find whacked out readings that might suggest there are tumors in your kidneys, your liver, your intestines or your blood. The gynecologist also enjoys finding internal malformations and taking cells out of your personals to look for cancer. The dermatologist looks for god-only-knows what since every blemish on the body looks like cancer to me. Even the dentist likes to do a kind of mammogram of your head to look for tumors in the jaw or some crazy place. There is no limit to the creativity of cancer to find new body parts to chew up. You got to admire it, really. Cancer has every characteristic that my father used to try to grind into me: determination, tenacity, guts, imagination...no wonder it is so successful.<br />
<br />
So the question is what to do with this blog. The original idea was to keep you all posted on my progress. Now that the treatment is pretty much done and there is nothing to do but wait to see how long I live, there won't be much to report until something terrible happens, in which case I may not feel like writing about it here. On the other hand, if I don't write this blog you might think I'm dead. You could just assume I am alive until the husband posts an epilogue on the blog. Another option is for me to write occasional, boring updates on my gloriously, humdrum existence. Lets go with the last option...for now.<br />
<br />
Thank you all for supporting me through this ordeal. Your help with meals, gifts, companionship and kind words made me feel more lucky than unlucky. Thank you also for reading and commenting on these posts and for letting me know that now and then they made you laugh.<br />
<br />
Until the next time I have something to say...<br />
<br />
xoxoxox<br />
<br />
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<br />Amyhttp://www.blogger.com/profile/00871696019086419473noreply@blogger.com6tag:blogger.com,1999:blog-665166707405561124.post-74539565790549679922011-09-17T06:57:00.000-07:002011-09-17T06:57:46.469-07:00The End of a SeasonI read a poem every morning, thanks to<span class="Apple-style-span" style="background-color: white;"> <a href="http://writersalmanac.publicradio.org/"><b>The Writers Almanac</b></a></span> sponsored by American Public Media. Today it was Robert Frost and it caught the mood of what I wanted to write about in this post.<br />
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<h2 align="center" style="text-align: center;"><span style="font-family: "Georgia","serif";">Reluctance<o:p></o:p></span></h2><div align="center" class="author" style="text-align: center;"><span style="font-size: 9.0pt;">by <a href="http://www.elabs7.com/c.html?rtr=on&s=fj6,shti,dv,240v,hfth,8os0,11nk">Robert Frost</a><o:p></o:p></span></div><div style="line-height: 160%;"><span style="font-family: "Georgia","serif"; font-size: 10.0pt; line-height: 160%;">Out through the fields and the woods<br />
And over the walls I have wended;<br />
I have climbed the hills of view<br />
And looked at the world and descended;<br />
I have come by the highway home,<br />
And lo, it is ended.<br />
<br />
The leaves are all dead on the ground,<br />
Save those that the oak is keeping<br />
To ravel them one by one<br />
And let them go scraping and creeping<br />
Out over the crusted snow,<br />
When others are sleeping.<br />
<br />
And the dead leaves lie huddled and still,<br />
No longer blown hither and thither;<br />
The last lone aster is gone;<br />
The flowers of the witch-hazel wither;<br />
The heart is still aching to seek,<br />
But the feet question 'Whither?'<br />
<br />
Ah, when to the heart of man<br />
Was it ever less than a treason<br />
To go with the drift of things,<br />
To yield with a grace to reason,<br />
<br />
And bow and accept the end<br />
Of a love or a season? <o:p></o:p></span></div><div style="line-height: 160%;"><span style="font-family: "Georgia","serif"; font-size: 10.0pt; line-height: 160%;"><br />
</span></div><div class="author"><span style="font-size: 9.0pt;">"Reluctance" by Robert Frost, from <i>A Boy's Will and North of Boston</i>. © Penguin, 2001. Reprinted with permission. (<a href="http://www.elabs7.com/c.html?rtr=on&s=fj6,shti,dv,h1eh,cd1w,8os0,11nk" target="_blank">buy now</a>) <o:p></o:p></span></div><br />
September. The sad music of the nighttime crickets brings back years of memories of lying in my childhood bed the night before the start of a new school year. I felt so sad about the end of summer in those days. I thought of summer as a time when I didn't have to worry about homework and could play with friends any day of the week. It wasn't that I disliked school so much, but that last night before the new school year began I imagined I would feel homesick that next day, that I would miss my mom and swimming and playing "My Side of the Mountain" in the woods. This is a feeling that is ingrained in me. Every September I am haunted by a back-to-school anxiety and "reluctance" even during those few years of my life when the crickets heralded no change to my routine.<br />
<br />
So why does the end of summer make me feel so blue? Might it be the loss of long and lazy summer days? That is NOT it. The pace of my summer day is closer to that of a labor camp than that of a day at the beach. Hours spent pulling at the billions of stinkin' weeds which threaten to strangle all living creatures on my property, or dragging two miles of hose around the yard with arms connected to a recently mutilated torso, are enough for me to long for snow-bound, winter days trapped in my office.<br />
<br />
Is it the loss of having my darling children near me all day long? Those sweet little voices chiming pleasantly throughout the house atop of summer breezes floating through the window screens? I don't think so. Take for example the greetings I am likely to receive after the daily trip to the grocery store that is required when my voracious offspring are in residence. "Mommy! You forgot to buy that critically important, incredibly exotic, habanero, tequila spiked, roasted chipolte hot sauce I <i>need</i>. I've asked you to buy that five times already!" Or, "Don't tell me you forgot to go that store that is about 20 miles out of your way to buy that bottle of probiotic organisms that costs about $90.00 but that is absolutely critical to maintaining the natural balance of my intestinal microflora?" No, I don't think it is the cheerful family banter that I miss so much.<br />
<br />
Perhaps it is the shared pastimes of summer that I miss. Such as when my darlings "share" with me their gigantic towers of laundry that they have been saving up until they have worn their last pair of 13-year old underwear twice. Probably not. I feel like passing out when I see their sheets. My daughter's look like several people were slaughtered with a dull knife in her bed. And my son's look (and smell) like they had been used to clean out the chicken coop.<br />
<br />
Could it be the colorful clutter that charmingly adorns their bedrooms and that makes me shudder with repulsion every time I accidentally allow my eyes to shift in their direction when I walk by? Not likely. It took me weeks to remove from their rooms the empty seltzer cans, dirty coffee mugs, shreds of tampon and razor packaging, crumpled sheets of notes on topics like "Dance and Society: 1960 - present" (Jesus, what are we paying for!?) or "World Politics" (huh?), and most horrifying of all, a large, albeit unopened, box of condoms.<br />
<br />
So I am reminded of another "poem" of sorts - one perhaps that my daughter might have "danced" to last semester....<br />
<br />
One less bell to answer<br />
One less egg to fry<br />
One less man to pick up after<br />
I should be happy<br />
But all I do is cry...<br />
<span class="Apple-style-span" style="background-color: white; color: #958c76; font-family: Arial, Helvetica, sans-serif; font-size: 11px; font-weight: bold;">Songwriters: Hal David;Burt Bacharach</span><br />
<span class="Apple-style-span" style="background-color: white; color: #958c76; font-family: Arial, Helvetica, sans-serif; font-size: 11px; font-weight: bold;"><br />
</span><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj8fzQEpFatmWNKnKP4LnXo8cFrtaZ6GI72o8j8IP6KHLhTPdbcX3Aj1FO37BPUfqq92IYUA3HpxIRzvHXSNZP6gXB-wMd1_lnSviw8EdYQVvkibXXoO-uKcVrTnuRSxx9rB7mu08B7g6hf/s1600/1960s+Dance.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="290" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj8fzQEpFatmWNKnKP4LnXo8cFrtaZ6GI72o8j8IP6KHLhTPdbcX3Aj1FO37BPUfqq92IYUA3HpxIRzvHXSNZP6gXB-wMd1_lnSviw8EdYQVvkibXXoO-uKcVrTnuRSxx9rB7mu08B7g6hf/s320/1960s+Dance.jpg" width="320" /></a></div><span class="Apple-style-span" style="background-color: white; color: #958c76; font-family: Arial, Helvetica, sans-serif; font-size: 11px; font-weight: bold;"><br />
</span>Amyhttp://www.blogger.com/profile/00871696019086419473noreply@blogger.com0tag:blogger.com,1999:blog-665166707405561124.post-58912763183293011292011-08-30T17:54:00.000-07:002011-08-30T18:00:21.326-07:00Phase III - Radiation<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGIoulYhLrFB0GRW817N6zLhRBG96woUmbwcuFs0D-RSKH83phRhL3hW04ABHePQ_llrATeNcSXyelNpr_0skdzbN_M61Oxwx0eYYj4CldWDvSmR20TG_9AxFaistR05rIJj7gyjKrw5rf/s1600/Radiation.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGIoulYhLrFB0GRW817N6zLhRBG96woUmbwcuFs0D-RSKH83phRhL3hW04ABHePQ_llrATeNcSXyelNpr_0skdzbN_M61Oxwx0eYYj4CldWDvSmR20TG_9AxFaistR05rIJj7gyjKrw5rf/s200/Radiation.jpg" width="150" /></a></div>So I haven't told you about radiation. I don't like it. Before I started phase III of this adventure, I had the impression that radiation was a piece of cake by comparison to surgery and chemo because it didn't hurt, it didn't make you nauseous, it didn't make you bald, and it didn't mess up the nerves in your hands and feet. But, as it turns out, it's not that much fun.<br />
<br />
My chemo experience includes sitting in a chair that looks like something you might test drive at a Brookstone store in the mall, complete with massage functions and heat. The minute I sit down, the staff gently covers me with a heated blanket. Volunteers come round to offer reading materials, snacks and drinks. While I sit enjoying the heated massage, I read an absorbing novel, like Ann Patchett's <u><a href="http://www.kirkusreviews.com/book-reviews/fiction/ann-patchett/state-wonder/?gclid=CJ7V2be596oCFcSD5godmmHGIg"><b>State of Wonder</b></a></u>, for example, which takes me far away to a land without cancer, needles, chemicals, death (well, perhaps I could have picked a better example than a book about human subjects experimentation, but you get the point...). From an upper floor of the hospital I have a million dollar view of the Boston skyline through clear, enormous windows. Now and then someone comes by to check on me, or to switch the bags of medicine (I no longer think of it as poison - how can I?) It's a little like flying first class. You don't really want to be spending all this time cooped up in an airplane, but if you have to do it, it's nice be treated like a VIP.<br />
<br />
By contrast, my radiation appointments are in the basement of the hospital, which has me thinking that the stuff they do in that department is so dangerous they need to keep it underground. The procedure requires that I strip down to my waist and put on one of those detestable hospital johnnies. I then sit in a waiting room, along with other ladies wearing ugly johnnies. This part of the ordeal brings back terrifying memories of mammograms. When my name is called, I walk into a dark room with a giant, spooky machine that looks like some kind of prehistoric monster. I lie down on a hard table that has a funny bump in it that my butt is supposed to rest against, but always seems to hit in just the wrong place. There are at least four technicians scurrying around the room officiously. One of them removes the johnny from the part of the body that is going to be radiated. They call out numbers to each other, they jerk my body around to line it up properly. They draw little blue marks all over my skin. They talk and move as if they are conducting a complex military maneuver. Then they all scatter from the room, leaving me to take the "heat" alone.<br />
<br />
After the technicians are safe and sound in another room, I hear strange noises that alternate between those associated with the moving machine and those of the radiation beams shooting out, I guess. I'm too freaked out to watch what is going on. I lie there with my eyes closed knowing that parts of me are in the line of fire. I worry that the movement of my chest as I breath will result in collateral damage. I try not to breath. I am so oxygen deprived I feel the need to take a really deep breath but don't. I feel like passing out. And then it is over.<br />
<br />
If I were to look on the bright side, however, I appreciate that the treatment itself takes only about 15 to 20 minutes most days. And, so far, I have no side effects, although I am told to expect burnt skin and fatigue.<br />
<br />
Yesterday, my treatment was cancelled. The radiation machine was broken. Apparently getting your radiation machine fixed is about as easy as getting your refrigerator fixed. All day long the radiation technicians were calling me giving me updates on the repairs, the likelihood of getting replacement parts, the vagaries of the radiation machine repair people's schedule... In the end, they cancelled my appointment for that day.<br />
<br />
The machine was still not fixed this morning. The radiation staff seemed stressed. At 7:00 AM, I got a call from one of the technicians telling me that the machine was still not fixed. I got the impression that it would be super dangerous if I were to miss another day. I started to panic and began thinking that I should look around for another radiation machine that worked. Before I got too far with that strategy, I got a call that the machine was operational, and I should come in. I sped into town, practically starved for my next dose of radiation. Shoot me up, monster machine.Amyhttp://www.blogger.com/profile/00871696019086419473noreply@blogger.com0tag:blogger.com,1999:blog-665166707405561124.post-64757954728118768232011-08-27T05:41:00.000-07:002011-08-27T05:41:25.326-07:00Post Chemo Milestones<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhcOgxX_FXHSt2x0HD7uXk420_okdvktJkRWcqwNkENqEVJ_zu7FZm7lODHd1hHsHulHNNANmqyPXF2folsbDjBlxmWbNGAIrz55nYtokHkYj0WoTapBFEt-Zn9DJRyvKT7hra7hsZX3bBO/s1600/694086-duck-running.jpeg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="116" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhcOgxX_FXHSt2x0HD7uXk420_okdvktJkRWcqwNkENqEVJ_zu7FZm7lODHd1hHsHulHNNANmqyPXF2folsbDjBlxmWbNGAIrz55nYtokHkYj0WoTapBFEt-Zn9DJRyvKT7hra7hsZX3bBO/s200/694086-duck-running.jpeg" width="200" /></a></div>I have reached a new milestone in my post-chemo recovery. I am back to running 3+ miles most mornings. I have been a "runner" since I was a sophomore in college (a very, very long time ago.) I use quotation marks for this word, "runner," since by an actual runner's standards, I am a walker. Before my diagnosis, I was "running" about 10 minute miles. I am now "running" something close to 12 minute miles. If you were driving by and saw me from the rear, you would see a short, lumpy woman shuffling like a duck in a hurry, while shifting the weight of her upper body in a sort of regular rhythm, thereby creating the illusion of a forward momentum that is faster than a walk, but it isn't.<br />
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My route includes one very long, very steep hill. Yesterday was the first day that I completed the "run," including the hill, without slowing to a walk (which might be closer to a crawl?) This feels like progress to me. Another step back to my old self.<br />
<br />
In other news, I shaved my legs! Yes, my friends, chemotherapy is like Nair for the whole body. But it's marching back in force. Even my head has a bit of fur on it.<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjs6E-sVhTbZHmK8ctmIbZA42Tq2r579HTIOvjCHrL2lihtsaRtmipmvoNtSjQ5PmuBPEcQ0mcJla71V_DPBcSSrn-Pvp1XNNaA31WkLMQwy3tCTg87m1FwVrlzbt8FKwHXATi-e3MvQuFQ/s1600/Snapshot_20110827_6.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjs6E-sVhTbZHmK8ctmIbZA42Tq2r579HTIOvjCHrL2lihtsaRtmipmvoNtSjQ5PmuBPEcQ0mcJla71V_DPBcSSrn-Pvp1XNNaA31WkLMQwy3tCTg87m1FwVrlzbt8FKwHXATi-e3MvQuFQ/s200/Snapshot_20110827_6.jpg" width="200" /></a></div>Almost time to ditch the bandannas, hats, and wigs (which I never wore)...I can hardly wait.Amyhttp://www.blogger.com/profile/00871696019086419473noreply@blogger.com0tag:blogger.com,1999:blog-665166707405561124.post-78998407671963468792011-08-18T11:05:00.000-07:002011-08-18T11:05:13.738-07:00Rare and precious animalsSo one reason that I have not been posting lately is that I've been struggling with computer challenges, and before that I had the privilege to be traveling. I want to share a little of our adventures with you.<br />
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In July we we went to the Galapagos. Not surprisingly, it was a unique and wonderful experience. As advertised, what makes the Galapagos truly amazing is the fearlessness of the animals.<br />
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For example, you can lie on the beach and cuddle up to a sea lion...<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg9Fr5jYgV_fp5fg1b-Q6sNpVMMsoTYcz2AEA_BcKm2MBGoEt1vH4M7F6_m7xCOSFvyza0oYUG-BHPhCyEQKvpJFlYYA13KIrpVHfQhca1A93k46UpXEqt7MQ70PuKR6adc0l9n4GgU-sBZ/s1600/IMG_0408.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg9Fr5jYgV_fp5fg1b-Q6sNpVMMsoTYcz2AEA_BcKm2MBGoEt1vH4M7F6_m7xCOSFvyza0oYUG-BHPhCyEQKvpJFlYYA13KIrpVHfQhca1A93k46UpXEqt7MQ70PuKR6adc0l9n4GgU-sBZ/s320/IMG_0408.jpg" width="320" /></a></div><br />
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You can just about trip over a 150 year old, 1000 pound tortoise.<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgRX_n3MAhb-6mNmOyLQGaeR0ZBkoueq5pu0bmrpdv8GBj0YxKC5Rsp_k52duSbp3xCFkM_ayvG5rJ_7oWCvDgmPVM9OmnSKRIk2djM1iCY-JZ4Uv566qYINNKAhiyXl9WGqUKsJWvnQlNp/s1600/_MG_4580.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgRX_n3MAhb-6mNmOyLQGaeR0ZBkoueq5pu0bmrpdv8GBj0YxKC5Rsp_k52duSbp3xCFkM_ayvG5rJ_7oWCvDgmPVM9OmnSKRIk2djM1iCY-JZ4Uv566qYINNKAhiyXl9WGqUKsJWvnQlNp/s320/_MG_4580.jpg" width="320" /></a></div><br />
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You can peer at the underside of an albatross and see its newborn.<br />
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</div>You can hang out with the Christmas Iguanas...<br />
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You can eat lunch with sea lions and pelicans...<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh44tewalMefUJ3FER_k0ksGzhvrSBCH-seOm44_Qo11WT-sO9rREuF5nlyZWOAEwgRW8A6Nu6m96Rf5rm53BQh5DFrNn53VUjIa6kFCgpQGlACAaozamRw40bKi-b8h1Ry2I591hBrHvRG/s1600/IMG_2943.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh44tewalMefUJ3FER_k0ksGzhvrSBCH-seOm44_Qo11WT-sO9rREuF5nlyZWOAEwgRW8A6Nu6m96Rf5rm53BQh5DFrNn53VUjIa6kFCgpQGlACAaozamRw40bKi-b8h1Ry2I591hBrHvRG/s320/IMG_2943.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><i><span class="Apple-style-span" style="font-size: small;">Please sir, may I have some more?</span></i></td></tr>
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</div><div class="" style="clear: both; text-align: left;">As a breast cancer patient you can amuse yourself with silly jokes about the blue-footed boobies.</div><div class="" style="clear: both; text-align: left;"><br />
</div><div class="" style="clear: both; text-align: left;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgqVt4YaORUkqF_Ih8CLA-1IN5zI-ZHB6Fsvj1F9IRiT5OF-NTU1pazEBYpRXzghU8-UkQNnDynRjM9k3N7C30asf-jr8a395nty9dsLqOVjNRUaGZuQOpEEd2crVNON1pR6WlsdXfna8VJ/s1600/IMG_0262.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgqVt4YaORUkqF_Ih8CLA-1IN5zI-ZHB6Fsvj1F9IRiT5OF-NTU1pazEBYpRXzghU8-UkQNnDynRjM9k3N7C30asf-jr8a395nty9dsLqOVjNRUaGZuQOpEEd2crVNON1pR6WlsdXfna8VJ/s320/IMG_0262.jpg" width="320" /></a></div><div class="separator" style="clear: both; text-align: center;"><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiaa07dfbqO-VF814gKRztnObQzezA-Y9b9kxsyLTHAm2T31W2WJF16LmxPqKJSZyIIIMO5BkGfK1NiC9-W-9td-xU_x0i3sK2DgdNGXiDhdi61KmoJ_MF5GPOfdlfe440Jkhemmu4HrAzx/s1600/IMG_0515.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiaa07dfbqO-VF814gKRztnObQzezA-Y9b9kxsyLTHAm2T31W2WJF16LmxPqKJSZyIIIMO5BkGfK1NiC9-W-9td-xU_x0i3sK2DgdNGXiDhdi61KmoJ_MF5GPOfdlfe440Jkhemmu4HrAzx/s320/IMG_0515.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span class="Apple-style-span" style="font-size: small;">Or the red-footed ones...</span></td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhlK9VJ33aJiRRA00hpUJGyPQSUVLfzaTTIpxJFFb9lTm0LYl86V6f4JKyJ27gC1WdC6_-9_Vl8seNrqUMMDhPhyphenhypheni2YQ_OLMEyTImgqWOKQ1-mIsJ_Z0-qDOEm4NLY8lSiZ1JxbQQX3MQy4/s1600/_MG_4364.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhlK9VJ33aJiRRA00hpUJGyPQSUVLfzaTTIpxJFFb9lTm0LYl86V6f4JKyJ27gC1WdC6_-9_Vl8seNrqUMMDhPhyphenhypheni2YQ_OLMEyTImgqWOKQ1-mIsJ_Z0-qDOEm4NLY8lSiZ1JxbQQX3MQy4/s320/_MG_4364.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span class="Apple-style-span" style="font-size: small;">Or the multi-colored ones..</span>.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;"><span class="Apple-style-span" style="font-size: small;">Or even the barefooted ones....</span></td></tr>
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</div><div class="separator" style="clear: both; text-align: left;">You can coo at a fluffy, baby albatross...</div><br />
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Or take pride in completing a steep hike with your mom...<br />
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</div><div class="separator" style="clear: both; text-align: -webkit-auto;">You can admire the scenery and figure out better ways of disguising your baldness.</div><div class="separator" style="clear: both; text-align: -webkit-auto;"><br />
</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiWlTaAJoUuPZvboeeHwUxQ8AMF4KsdMx1FQMp4w13aj0BE4aDbnq4cLjTpv93GnhNq3fKXG9mS98DWw2KwA0Fzd4Y5qq1_EqCAyPzjKOY9EIB6N4BO376_-upvLhr6gR_kw82fCzEqIn97/s1600/IMG_0221.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiWlTaAJoUuPZvboeeHwUxQ8AMF4KsdMx1FQMp4w13aj0BE4aDbnq4cLjTpv93GnhNq3fKXG9mS98DWw2KwA0Fzd4Y5qq1_EqCAyPzjKOY9EIB6N4BO376_-upvLhr6gR_kw82fCzEqIn97/s320/IMG_0221.jpg" width="320" /></a></div><br />
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You can wonder at the unfathomable depths of the Pacific ocean and worry about how you might rescue your mother should she fall in it and get caught under a diving porpoise and a zodiac motor.<br />
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</div><div class="separator" style="clear: both; text-align: left;">You can boast to your friends about having snorkeled with penguins...if you did...</div><div class="separator" style="clear: both; text-align: left;"><br />
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</div><div class="separator" style="clear: both; text-align: center;">And occasionally, if you are really lucky, and quiet and savy about approaching the rarest and wildest of the earth's creatures, you can experience exceptional joy and beauty.</div><div class="separator" style="clear: both; text-align: center;"><br />
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Amyhttp://www.blogger.com/profile/00871696019086419473noreply@blogger.com2tag:blogger.com,1999:blog-665166707405561124.post-37836996876306293122011-08-11T08:06:00.000-07:002011-08-11T08:06:40.595-07:00Making it Look EasyMan! It's been a month since my last post. I have lost all ability to manage my time. It's been a busy month, however, so I hope you'll cut me a little slack. Here is the first in a series of updates. This entry was started about three weeks ago.<br />
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On July 20 I had my last, regular chemo infusion. I will continue to receive an infusion of a single "maintenance" drug, they call it, that has no obvious side effects (other than heart failure), every three weeks for another 8 months or so. So we are now on official hair re-growth watch. It will be several weeks before I start to see or feel any improvements. I am looking forward to touching things without feeling an irritating and chafing tingle that sends bristly shivers up my spine. I look forward to losing the yellow color and fungal appearance of my fingers and toes. I imagine having a reduced appetite and increased metabolism off steroids. Oh...and I'm hoping for a cure for my cancer.<br />
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My doctors like to tell me that I'm making BC treatment look easy. This comment makes me glow with pride, as if I had done something really remarkable and accomplished. It also makes me feel that every complaint I <i>might</i> feel like expressing would contribute to a lower grade on my cancer report card so I stifle them. This stoicism has its pros and cons. On the pro side, my doctors, my family and my friends tell each other in my hearing how well I am doing, which, of course, makes me feel very well. On the con side, my kids don't clean the dishes.<br />
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The logic here is that if I were to act sicker, maybe my kids would do more chores around the house, or treat me with sympathy and kindness.<br />
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As it is, my son makes fun of me just like he always has, especially when I try to grab a piece of him for a snuggle. He says things like, "stay away from me you freak," "you look like a mental patient," "you're ugly and you disgust me." Now I know that some of you are appalled by such rudeness and disrespect, but for some reason I find this outrageous rudeness funny. So I laugh and that encourages him to further abuse. But now and then I think I should take some offense as an overweight, bald and bosomless woman about being called ugly and disgusting. I should defend bald, bosomless women the world over against prejudicial outbursts such as these.<br />
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My daughter ignores me as usual and continues to have no inhibition about letting me know how idiotic and useless I am as a parent and adviser.<br />
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Sometimes I worry that I should be reprimanding my children for their disrespect, and that I should be teaching them humility and empathy. But then I think there is very little I can do anymore to shape the behavior and values of my 19 and 20 year old children, so I sigh, and then one or the other will ask with alarm, "what's wrong? "do you feel okay?" Best to be jocular and make it look easy.Amyhttp://www.blogger.com/profile/00871696019086419473noreply@blogger.com0tag:blogger.com,1999:blog-665166707405561124.post-29569482888040519072011-07-11T07:00:00.000-07:002011-07-11T07:00:33.978-07:00Summer Celebrations and My remains<div class="separator" style="clear: both; text-align: center;"></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEib5UvCOSe0v9KPgmfYuAaJj7i2Uch18Qo5-t6fomdQEA2IPEZ7_jOJwX9xtzIqa-vZf8rfhCPQzb-0NUa9c3Tp1de6Bl7Le_zoCiGWoHOyMSNoVr5DTB7sOeItD9eirf7LU-TSII1mIegT/s1600/DSC00925.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEib5UvCOSe0v9KPgmfYuAaJj7i2Uch18Qo5-t6fomdQEA2IPEZ7_jOJwX9xtzIqa-vZf8rfhCPQzb-0NUa9c3Tp1de6Bl7Le_zoCiGWoHOyMSNoVr5DTB7sOeItD9eirf7LU-TSII1mIegT/s320/DSC00925.JPG" width="320" /></a></div><br />
Dear Bloggees,<br />
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It's been a while since I wrote a letter to you, which was the original idea for this blog, you might recall. We had a very fun July 4th weekend in Maine with my family. Eighteen of us jammed in my mom's, not very large, summer home on an island off the mid-coast of Maine. Utter chaos. The group includes many growing boys and an average size refrigerator. Grocery shopping, cooking, kitchen cleaning, trash removal and dealing with the plumbing take up the greater portion of our "vacation" time as a family.<br />
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The sleeping arrangements usually offer opportunities for adventure and diplomacy. The results this year were that two of the party slept in a tent and two or three in boats. The husband and I scored a bedroom. Yet another perk of BC.<br />
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It's a beautiful place. The house sits on a hill overlooking Penobscot bay. The yard is fringed with lilies, rosa rugosa, raspberry bushes and wild phlox. The husband and I like to pull our Adirondack chairs to the far edge of the lawn and watch the field mice and sparrows darting about. Sometimes we read there. But since there is usually a fierce game of badminton or an aggressive gossip session going on behind us, it's hard to get too immersed in nature or literature.<br />
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We've gathered at this place annually for many years. There is always some family friction to deal with and a lot of frustration in trying to do the stuff you have imagined you were going to do before you got there. But we manage to produce precious memories most of the time, so we always return. This year the memories included the combination of inept badminton played by the adorable 14-year old girls alongside the practically professional badminton played by teenage and 20-something boys; a lobster feast and silly, poetic tributes to my mom whose birthday we were celebrating; a bike ride that included a tire blow out so became a bike walk; a dance party that featured the husband's "gator" and the exotic, athletic moves of the daughter; a slow walk around the point; and cutthroat Pictionary.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhPBjNg1WcOagFvIXiBzbxF_ruj-4HIc0sbQJV7zY79W-FqgYPRNTlr4Iq_vUl9EZVyqTXJwYuzEB8uDe8N5iyxX2jqI57wlh0kbZb6FIIsWY9kAFZKr4jrG5ZLXIqYArtKUlWFW4t_9GoE/s1600/Summer+2011+081.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhPBjNg1WcOagFvIXiBzbxF_ruj-4HIc0sbQJV7zY79W-FqgYPRNTlr4Iq_vUl9EZVyqTXJwYuzEB8uDe8N5iyxX2jqI57wlh0kbZb6FIIsWY9kAFZKr4jrG5ZLXIqYArtKUlWFW4t_9GoE/s320/Summer+2011+081.JPG" width="320" /></a>The Bay is the focus of a lot of activity up there. My family likes to sail and kayak in it, and eat the lobster and mussels from it. I only like to spend time in the bay when the temperature is in the 80s and the sky is clear, so almost never. My father loved sailing in the bay. He was a late comer to sailing and was truly a hazard to the other boats that might have the misfortune of sailing too close to him and of course to his unlucky "crew" (usually some of us). After he died, (in a manner unrelated to his lack of sailing skills), we tossed his ashes in the bay thinking that was where his remains belonged. I often wonder about that. The water is so cold, the air is damp and foggy, and the noise of the lobster boats incessant. I wouldn't want my remains floating there.<br />
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For the record, I would like my remains in a place where you can't hear motors. I am so tired of the sound of cars, planes, boats, guns (yes, guns - we live near a shooting range), lawn mowers. Plant me on a hill away from the noise, please.<br />
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Well, I hadn't meant to get melancholy, but sometimes that 's what this blog is for. I hope you all had happy July 4th breaks and have more summer fun to anticipate.<br />
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Be well.<br />
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Love,<br />
AmyAmyhttp://www.blogger.com/profile/00871696019086419473noreply@blogger.com0tag:blogger.com,1999:blog-665166707405561124.post-48289730056732240862011-07-01T14:58:00.000-07:002011-07-01T14:58:12.443-07:00A New Nickname<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg8pIVeQ4gqnZ-proTPC8Vkdm6xj4OlG8IgsEBERMaBdOYoVVrDCi9q_rvWBJZ-aPoGf4HmDN9_9xbGcPs1jN5mnqQCEFTuxF1OaP-nDbN8j3Tt0vYRIaW7LhfgHevLkIl3Kp0znsrhvje0/s1600/Chemo+Brain.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="181" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg8pIVeQ4gqnZ-proTPC8Vkdm6xj4OlG8IgsEBERMaBdOYoVVrDCi9q_rvWBJZ-aPoGf4HmDN9_9xbGcPs1jN5mnqQCEFTuxF1OaP-nDbN8j3Tt0vYRIaW7LhfgHevLkIl3Kp0znsrhvje0/s320/Chemo+Brain.jpg" width="320" /></a></div>So it is time to concede that Chemo Brain is a real problem and I have it. The husband has taken to calling me CB (which, he reminds me, also stands for chicken brain.) I did a little research on<a href="http://www.cancer.org/treatment/treatmentsandsideeffects/physicalsideeffects/chemotherapyeffects/chemo-brain"><b> Chemo Brain</b></a>, and learned about some common symptoms.<br />
<ul><li>Forgetting things that they usually have no trouble recalling, memory lapses</li>
<li>Trouble concentrating, can’t focus on what they’re doing, have a short attention span, may “space out”</li>
<li>Trouble multi-tasking</li>
<li>Taking longer to finish things, disorganized, slower thinking and processing</li>
<li>Trouble remembering common words (unable to find the right words to finish a sentence)</li>
</ul><div>So a typical day in the life of CB goes something like this.</div><div><br />
</div><div>Deaf, elderly dog barks. Barks again. Barks again. Not with any particular rhythm or frequency which makes it even more irritating. Each bark is a grating surprise. CB squints at the clock. 5:30am. CB pulls a pillow over her cold, bald head to muffle the noise. Husband gets up to manage the dogs. </div><div><br />
</div><div>Two hours later, CB gets out of bed. Unused to her new cancer corpulence, CB waddles stiffly into the bathroom. Looks at herself in the mirror. Shuffles a bit faster out of the bathroom. CB stands uncertainly in the middle of the bedroom. What to do next? Dress? Wash up? Drink a cup of coffee? Ten minutes pass. CB scratches her mosquito bites. CB's feet start to hurt. CB returns to bed. CB thinks to herself, today is going to be a productive day. No wasting time. No distractions. Just pure productivity from morning to night. And then CB will have a good night's sleep. A good night's sleep sounds good. Maybe last night's sleep isn't over yet. CB pulls pillow back over her head. </div><div><br />
</div><div>Oblivion fails to return. CB gets up. Shuffles back to the bathroom and washes up without looking at herself in the mirror. Opens shirt drawer. What shirt should she select today to cover her mangled torso. That one is too tight. That one is too skimpy. That one is too bright. That one is too transparent. Might as well wear this one...again. Now what pants to wear. Too tight all of them. Sweatpants...again.</div><div><br />
</div><div>CB waddles downstairs to make breakfast. Feeling good. Ready to really bustle about. With great efficiency and sense of purpose, CB pulls out the eggs, the butter, the toast. Wondering whether all this activity might count as her exercise for the day, CB energetically drops a couple of pieces of bread into the toaster. </div><div><br />
</div><div>The phone rings. CB answers. No one responds. CB hangs up. Suddenly CB remembers that she needs to transfer the laundry to the dryer. Back upstairs. While transferring the laundry, CB notices that she hadn't made the bed. CB makes the bed. She finds herself standing in the middle of the bedroom again. A bit confused. Now what is CB doing up here? CB sniffs the air. Something's burning. Damn. Fast waddle back down. The toast.</div><div><br />
</div><div>Back to the kitchen. The toast is burnt. CB extracts the toast and makes a big mess of crumbs. She cleans the crumbs. She does a really good job of this, and feels a sense of accomplishment. What else needs cleaning. CB notices that the cabinets have some smudges on them. CB vigorously cleans one or two cabinets. She peers into the oven and decides it too needs cleaning. She rinses out her cleaning rag in preparation for the oven cleaning project but sees water spots on the window. It may be time to clean the windows.<br />
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The phone rings. CB's sister checking in. They chat for 20 minutes. CB's son comes into the kitchen. "Is breakfast ready yet? Didn't you say you were going to make it about 2 hours ago?"</div><div><br />
</div><div>Time to do some work. CB sits down at her computer. First things first. Check email. Hmmmmm. Pottery Barn is having a sale. Might want to check that out. Huh, those curtains are nice. Now where might CB need some new curtains? <br />
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CB heads upstairs to consider this question. Once upstairs, CB can't remember what she's doing up there. Walking past the laundry machines reminds CB to fold the clothes in the dryer. Forty five minutes later CB returns to her desk.<br />
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CB continues to review her email. Then CB decides it is time to get serious. She opens up a work folder. She sits up straight, cleans her fingernails and writes the title of the paper she is working on. That feels good. She's on a roll now.<br />
<br />
CB realizes she needs to do a little research first. She opens Google. Oh what a funny little video is posted on her home page. CB wonders what other funny videos she might find on You Tube. Lots. Back to the research. CB finds some information that might be relevant to her paper. She begins to read an article. She suddenly feels a bit peckish. Whoa! Time for lunch already.</div><div><br />
</div><div>So it goes...</div>Amyhttp://www.blogger.com/profile/00871696019086419473noreply@blogger.com1tag:blogger.com,1999:blog-665166707405561124.post-14693618104758068932011-06-23T07:44:00.000-07:002011-06-24T07:41:30.109-07:00Poll Results and Mental Health Update<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiWTOZ5NktktXJ9FjWYurG6W7Nbn-yNyh_uxVDuqFG9bw3nIXIuYuRusQDR4Y_5v-mtkj7x0pJSy0dxL-8TYnR_veNhrjQT7rVFkficHMeMCeVwyAllLv9HwGkPEaspJL0mISW6bYmZ7ID2/s1600/carpe-diem-helmut-rottler.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="223" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiWTOZ5NktktXJ9FjWYurG6W7Nbn-yNyh_uxVDuqFG9bw3nIXIuYuRusQDR4Y_5v-mtkj7x0pJSy0dxL-8TYnR_veNhrjQT7rVFkficHMeMCeVwyAllLv9HwGkPEaspJL0mISW6bYmZ7ID2/s320/carpe-diem-helmut-rottler.jpg" width="320" /></a></div><br />
So I am sure you are all dying to know the results of the poll. Eleven of you voted and the vote was unanimous that the Tufts response was unsatisfactory. You win. I will tell Tufts that I am not satisfied with their proposed "solution" to my complaint in a letter that I have copied below. I give Tufts further credit in the meantime for posting a comment in response to my post entitled, "<b><a href="http://herpositive.blogspot.com/2011/04/lesson-in-health-insurance.html">A Lesson in Health Insurance</a>.</b>" Now, that's astute social networking.<br />
<br />
All continues to go smoothly with my treatment. The side effects of the chemo are tolerable, although becoming tiresome. I have four more infusions of the current cocktail and then a break before radiation starts. Did I tell you that during that break I am traveling with my family on a <a href="http://www.nationalgeographicexpeditions.com/expeditions/galapagos-cruise/detail"><b>National Geographic Expedition</b></a> to the Galapogos? We are celebrating the end of chemo, my mother's birthday and a 25th wedding anniversary. We're in a kind of <i>carpe diem </i>phase lately.<br />
<br />
As the end of treatment approaches I feel increasing trepidation about my future health. My primary care provider has been haranguing me about the blood pressure readings I am getting before each infusion. She knows about these readings by tracking them through her secret, back door access to my cancer medical records. I think she's jealous about all the cancer drama and wants a piece of the action. As long as I can remember, or at least since the<a href="http://herpositive.blogspot.com/2011/03/denial.html"> <b>days I thought I had AIDS</b></a>, my blood pressure is elevated at the doctor's office. "White coat hypertension" they call it. Wouldn't I be dead by now if I really had a serious, 30-year-old, untreated problem with my blood pressure?<br />
<br />
Many times I have been instructed to take my blood pressure at home to prove that it is lower there than in the medical office, and year after year the readings prove the point. But my PCP doesn't seem convinced or she's concerned about a negligence lawsuit. The oncology nurse practitioner told me recently that she once participated in a workshop during which the facilitator instructed the attendees to be guided every day of their practice by imagining what the patient might say in the witness box should she file a medical malpractice complaint. So much for medicine as art.<br />
<br />
So the PCP <span class="Apple-style-span" style="background-color: white;">called the oncologist and told the oncologist to tell me to set up an appointment with her to discuss my blood pressure readings. (She must have thought that the oncologist would have more sway with me than she would. Kind of like 7th grade romancing - Jenny, you tell Joey to tell Harry that Penelope likes you...) Meanwhile, the oncologist says, "I never pay any attention to the blood pressure readings that are collected in this office. You'd have to be dead not to have elevated blood pressure while receiving cancer treatments."<br />
</span><br />
<span class="Apple-style-span" style="background-color: white;">So all of this serves to remind me that once this breast cancer stuff is done, it's not like I can pretend I am healthy and happy and never have to worry about illness again. First, there is the 10% chance of recurrence. Second, my risks for getting other diseases is probably elevated. Third, I could get a whole new cancer and have to go through all this again, and worse. (Lately I've been focusing on melanoma and colon cancer.) I met a lady recently who while recovering from breast cancer treatment learned that she had colon cancer. This is why <i>carpe diem</i> works for me. I feel pretty good and pretty safe today. Time to go for a walk in the rain.<br />
</span><br />
<span class="Apple-style-span" style="background-color: white;">Have a happy week, everyone. xoxoxox</span><br />
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<b>Response to Tufts</b><br />
<br />
Dear Ms. Jacobson,<br />
<div class="MsoNormal" style="line-height: normal;"><o:p></o:p></div><div class="MsoNormal" style="line-height: normal;"><br />
</div><div class="MsoNormal" style="line-height: normal;">Thank you for your letter dated May 19. I have considered your response and the proposed "resolution" of my complaint and have decided that it is not satisfactory, in part because I do not understand what the resolution is. Although you acknowledge that Tufts personnel did not follow proper procedures, you do not offer any suggestions for how to ensure that future patients do not suffer similar problems filling their prescriptions. You merely state that "Your concerns have been documented and are now on file with Tufts Health Plan." I do not see how this action resolves my complaint.<o:p></o:p></div><div class="MsoNormal" style="line-height: normal;"><br />
</div><div class="MsoNormal" style="line-height: normal;">You discuss how personnel receive regular training on customer service but customer service wasn't really the issue. The issue was a conflict between two policies: one which required that the drug be provided through a mail order system and one that restricted dispensing of the drug to once every 14 days. My physician instructed me to take the drug every fourteen days following each chemotherapy appointment. The Tufts policy prohibited CuraScript from sending out the drug earlier than the 14<sup>th</sup> day of the cycle thereby making it impossible for me to receive the drug in time to take it as prescribed. As a consequence of these conflicting policies, I was obliged to spend hours making phone calls to Tufts and CuraScript to obtain a waiver of the policy that would allow me to pick up the medicine at my local pharmacy. Moreover, Tufts and CuraScript personnel were obliged to deal with an anxious and increasingly frustrated patient for many hours that could have been spent more productively. In other words the conflicting policies result in more waste, increased overhead and lost productivity. It seems to me that the only appropriate "resolution" would be to change the policies to either extend the dispensing period to accommodate mailing time or to do away with the mail order requirement.<o:p></o:p></div><div class="MsoNormal" style="line-height: normal;"><br />
</div><div class="MsoNormal" style="line-height: normal;">You also mention that CuraScript sent the prescription for four doses of Neulasta to CVS and "as such, CuraScript no longer held a valid prescription on file to accommodate future fills." This process is almost impossible to imagine in an era when most correspondence is conducted electronically ensuring that a "copy" of the prescription would still be available to CuraScript. If CuraScript actually conducts business in the manner you describe such that it does not retain copies of the prescriptions it sends to the pharmacy, I think another possible "resolution" to my complaint would be for Tufts to cancel its contract with CuraScript.<o:p></o:p></div><div class="MsoNormal" style="line-height: normal;"><br />
</div><div class="MsoNormal" style="line-height: normal;">My chief objective is to prevent future incidents of this kind. Filing this paperwork will not achieve that result.<o:p></o:p></div><div class="MsoNormal" style="line-height: normal;">Thank you again for your efforts to seriously consider the issues I have raised.<o:p></o:p></div><div class="MsoNormal" style="line-height: normal;"><br />
</div><div class="MsoNormal" style="line-height: normal;">Sincerely,<o:p></o:p></div>Amyhttp://www.blogger.com/profile/00871696019086419473noreply@blogger.com0