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Showing posts from 2016

Cancer -- The Gift That Keeps on Giving

There is a misconception that with cancer, it's diagnosis-chemo/radiation/surgery--done/cured.  Not so.  I don't know when we as a society started to substitute the word remission with cured.  Did they find a cure for cancer and I never heard about it?  I didn't realize this had happened until I was diagnosed.  The nurse practitioner said, "I'm so sorry; it's Stage IV, there is no cure."  I thought, "Duh, it's cancer, everyone knows there's no cure" and in my state of shock thought her wording was odd, but thought nothing of it.  I've come to find out that in general, people think that once treatment is over, cancer has magically disappeared.  I was diagnosed Stage IV/metastatic/terminal from the get-go.  I don't hear the term terminal very much, though.  I think that it's all part of the desensitizing/sanitizing of humanity.  As an aside, I have a blog post in the works entitled "When I Die", and one of the things I

Little Pink Houses of Hope Retreat

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Edited to clarify -- My 19 year old son Jimmy was allowed to come, even though he is over the age of 18.  He could not come due to work scheduling conflicts.  My husband's name is also Jimmy.  My other son, David, age 15 at the time, did come, too.  Sorry for the confusion. I've posted a photo album on my personal facebook page with all of the photos from the trip.  Here's the link if you'd like to see them:  photos Little Pink Houses of Hope is a wonderful organization.  They provide week long retreats to breast cancer patients and their families.  From their website:  "Every beach retreat is designed to help families relax, reconnect and rejuvenate during the cancer journey."  We finally had a week when we could "get away from it all", and at the same time connect with other patients and families.  I was so excited when I got the word that our application had been approved!  Our retreat was held at Ocean Lakes Campground in Myrtle

Treadmill Catch-22

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Reason 1 to get on the treadmill:  Every time I see my cardiologist, she tells me she wants me to do some cardio, not just walking slowly and steadily, but interval -- alternating walking and running.  I can do that.  I've done that before.  I'm familiar with the Couch25K app.  Many times have I started ... and many times have I stopped, and gone back to old habits.  Now, my motivation here is to keep my heart healthy.  Believe it or not, my heart is healthy.  I have echocardiograms every three months that say so.  I have echocardiograms every three months because one of the maintenance medications I'm on is known to cause heart problems.  I'll be on this medication for the rest of my life, or until it stops working.  So, keeping my heart healthy is a priority. Reason 2 to get on the treadmill:  Those 20 odd pounds I lost during my summer of chemo have been sneaking back up on me.  I had gone down a size (had to buy all new clothes; yet another unexpected expense of c

It Takes A Village

This blog post has been in my mind for quite some time.  When I was asked to speak to the employees of the biotech company that produces my medications, this is the topic I chose.  If you are reading this, you are a part of my village.  I appreciate each and every one of you.  Here is the link to the blog entry about my trip to San Francisco:  Visit to Genentech . Here are the highlights of the talk that I gave there: They say it takes a village to raise a child.  I also say that it takes a village to care for a sick person.  My village starts with my husband, my primary caregiver.  This man has been my rock, the person I lean on figuratively and literally.  He has come to every single medical appointment I've had.  He has dried my tears.  He has made me laugh.  He has given me strength.  I wouldn't have made it through the hell that has been the past year and a half without him.  He and my boys.  Of course, my sons are next.  They also have dried a few tears, have helped m

Visit to Genentech

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What an unbelievably awesome time we had! I got to meet the people who work for the company where the medicine that keeps me alive is manufactured.  How cool is that?! Genentech is the biotech company that produces two of my maintenance medications,  Herceptin and Perjeta .  Click on the links if you want more information on the company and/or the medicines and what they do.  I receive Herceptin and Perjeta via infusion once every three weeks.  These medicines keep the cancer at bay.  I will be on them for the rest of my life. Genentech has a program called Patient Connect.  I was a part of that this year.  I flew out to San Francisco to visit the company and to talk to their employees about my experience with Perjeta.  Over the course of three days, 12 patients, on different medications, were there to speak to the employees.  My day was Friday.  The day started at 7:15am when a car picked my husband and I up from the hotel to drive us to the campus.  After a quick breakfast, i

Fair Fail

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It's fair weekend where I live.  The county fair has always been a big deal here.  The schools are closed for students on the Friday of fair weekend; kids get in free on Fair Day.  Today, Saturday, was a really nice day.  Historically, going to the fair means muddy shoes; it's unusual when it doesn't rain a day or two before the fair opens, and I remember once or twice when it had to be shut down for a Hurricane.  So, with the good weather today, and my post cancer diagnosis seize the day attitude, I talked my husband and 15 year old into going with me (the 19 year old was already there, working). I was feeling good.  I had a blog post forming in my mind.  It was going to say things like, "Get outside when the weather's good, get some fresh air!" and "Have fun when the opportunity arises" and "Eat the fried oreos, ride the fun rides!" and the like.  I knew I wasn't going to able to ride my all time favorite ride but I was kind of okay

Laugh With Me

Yesterday I saw someone I haven't seen since my diagnosis (and long hair). I was standing nearby while she chatted with someone else.  It was clear she didn't recognize me until I spoke to her.  She seemed glad to see me and asked how I was.  I explained, in the shortest version I can, that I'm "stable" and "no evidence of active disease" and will continue to be on treatment for the rest of my life.  When she asked, "How are you doing?" my answer was "Fine; I'm still alive!"  The look on her face....  I really need to remember that not everyone is comfortable with the jokes ... but it's not just that; sometimes I'm not joking but it comes out that way unintentionally. The other day I was checking out at the grocery store, and a prompt came up on the credit card scanner asking if I wanted to donate to cancer research.  I said, out loud, "No, I've already donated enough to cancer research."  Hahahaha!  I'

Hair

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Hair.  It defines us, I think more than we realize.  We can change our look just by styling our hair differently.  Have it cut after wearing it long for a time, you look completely different.  Wear it short for a time, then let it grow, you look completely different.  Change the color, you look completely different.  Heck, you look different with or without bangs.  You wear it up when you dress up to go out.  You wear it down to be more casual.  You put it in a ponytail or under a ball cap when you don't want to deal with it.  I used to think of my hair as my best feature.  It was long, it was wavy.  It was curly when I was younger.   When I was little, my dad would sing, "I know a little girl, who has a little curl, right in the middle of her forehead."  When I was in high school, it would take me an hour to blow dry the curls out of my hair.  When I was in my early twenties, I learned to embrace the curls.  It was the era of big hair.  You towel-dried it, you put mousse

Shopping by Myself

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I went to BJ's this morning.  By myself.  Just like everybody else.  It's been almost a year since I've done any kind of shopping alone.  So, even though it's an everyday thing for most people, and used to be commonplace for me, it was unusual.  You may remember from my previous blog post that my best times are in the morning.  Since it's Spring Break and I work at a school, this Thursday morning did not have me expending all of my energy at work, as is usual for a weekday.  So, I decided that I wanted to surprise the boys by going and buying Easter dinner, and some things for Easter baskets.  I bought a small ham and some side dishes, along with some Easter candy.  They didn't have much in the way of chocolate bunnies, though.  I did buy a cute little flower filled basket to put on the kitchen table.  I also bought something for dinner tonight.  Tomorrow morning I just might go to CVS by myself to pick up my prescription and buy some more things for the Ea

A Day in the (Cancer) Life

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All of my treatments, tests, oncology, and cardiology appointments take place at Georgetown University Medical Center.  With no traffic, it usually takes about 40 minutes to get there from home.  In rush hour, it has taken up to two hours.  I try to consolidate my appointments in as few days as possible, because it can take so long to get there, and to minimize the number of days taken off from work.  I thought I'd share with you what a day looks like.  Actually, I'll illustrate "regular" days and "medical" days. A typical, "normal, every day" work day has me working at a high school as a teacher's aide.  I love it.  My co-workers, the students -- the day is never dull.  Most days are exhausting, sometimes quite entertaining; never dull.  :)   Before my treatments started a year ago, a normal day would consist of actually doing productive, "normal" things after work.  I would make dinner (most days), play with the dog, drive the boy

Walking away a winner....

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When I started seeing my cardiologist, she told me she wanted me to start walking.  Interval walking -- you know, walk for a time, walk faster for a few minutes, slow down, speed up, etc.  Either/or start walking up the stairs more.  Something to get my heart rate up.  So, I started walking up the stairs at home once or twice a day, in addition to walking down the stairs at work at least twice, and up them at least once, per day.  I'd have a good routine going, then I had surgery and stopped.  Started again, overdid it, stopped.  Started again, caught a cold, stopped.  Well, today I got on the treadmill.  Why the treadmill and not outside now that the weather has warmed up?  A few reasons:  It's raining, so that right there would do it.  The treadmill keeps me at a steady pace.  Also, I can track it, and hopefully see an improvement in time, distance, and speed as time goes on.  The treadmill has something I can hold on to in case I lose my balance, which has been kno

One year....

I've been looking forward to this day for a while now, just so I could write this "one year later" post.  I'm finding it, actually, difficult, but here goes. One year ago today, Jimmy and I sat in my surgeon's office and the world shifted.  I know that's an overused statement, but at that moment, I really felt something shift.  Emotionally, mentally, everything shifted.  At that time, we thought it was early Stage III.  We found out after the lung biopsy that it was, in fact, Stage IV.  I remember the day so clearly.  It was snowing, and everything was closed.  I was so glad that the doctor's office was open so we wouldn't have to wait any longer for the test results.  I remember pulling into the hospital parking lot and finding it mostly empty, except for a few cars and the plow.  The plow driver seemed none to happy to see another car in the lot, let me tell you.  ;) So, we got the news (I have a previous blog post talking about that).  We drove