Sunday, September 18, 2016

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 me walk, accompany me to the store for the heavy lifting.  My older son took over a lot of the meal preparation.  My younger son took over some other chores around the house, and he rides with me to work (his school) and carries my bags for me.   Our dog.  So much to say about Benji.  We think that Benji knew I was sick before we knew.  We noticed that he was near me constantly.  He wouldn't leave my side (my left, cancerous side).  One day when my husband and I arrived home, and Benji came right to me, I said to my husband, "I wonder if I'm really sick and just don't know it yet."  A few months later we got the diagnosis.  That dog licked my tears away.  He would sense when I was sad and nudge my hand in comfort.  He would nap with me.  He is simply amazing.

Next in the circle are my sisters and my husband's brothers and sisters.  My sisters came with me to a chemo session, and they took turns babysitting me after my surgery.  My husband's sisters, as well as one of mine, sat with him in the waiting room while I was having surgery; they also helped with some housecleaning, and the switching of the master bedroom from upstairs to down.  My husband's brothers helped out with a few handyman chores around the house, and one took him away for a weekend for a much needed break.  They did so much more than I could list here.  We couldn't have done it without them.

We also couldn't have done it without our extended family and friends who helped.  From the chemo care bags to the meals provided to the gifts, to helping out with our high school senior's graduation party.  We are so overwhelmed by everyone's generosity.  I'm not talking about just the tangible gifts, either.  I'm talking about the gift of time (friends coming over to visit; family enjoying a meal with us); I'm talking about the gazillion facebook and caringbridge comments you posted; I'm talking about the jokes texted to me on chemo days; I'm talking about the pink fingernails; I'm talking about the shooting star that you saw after you prayed for my well being; I'm talking about the card that says, "I haven't said anything to you yet because I just don't know what to say."  That, my friend, was the perfect thing to say.

My coworkers are next.  I can not tell you how I am working at the right place.  I work at a high school.  Staff and students alike have been incredibly supportive.  From transferring me out of the classroom during chemo to the sick leave donations to the meals brought to the understanding of my time off for medical appointments.  My work family rocks.

My new facebook friends.  Since diagnosis, I have joined a few facebook support groups.  These ladies are going through the same thing I'm going through.  They give great advice, and great support.  A wonderful new group of friends.

My medical team is also a part of my village.  My oncologist, my cardiologist, my surgeon.  I trust them with my life.  These ladies, and all of their staff.  The nurses at the infusion center.  Everyone I come in contact with at the hospital when I go for scans, echos, and the like.  There was one picture missing from the slide during my presentation.  The group of people I was there speaking with, the people who make my medication.  Did I tell you yet how surreal and awesome it was to be there with them?

There are a few celebrities who are a part of my village.  They don't know it, but they are instrumental in my health/well being. 
  • Lynda Carter, Wonder Woman.  When I was young, the original Wonder Woman series was on television.  I loved that show.  When I was going through chemo, I checked out all three seasons from the library and watched them all.  I have Wonder Woman sunglasses that I wear for fun.  My nephew and his wife gave me a Wonder Woman water bottle.  My coworker gives me Wonder Woman themed items.  Not only do I love the series, I aspire to be Wonder  Woman; she's empowering.  I want to be brave, and strong.  Sometimes, though, I realize I am not so much Wonder Woman, but her bumbling little sister, Drusilla.  ;)
  • Rick Springfield.  I love 80s music.  Rick Springfield came to the Calvert Marine Museum in concert.  Before cancer, I would have said, "Some day...."  After a terminal diagnosis, you realize that all of a sudden, those "some days" are behind you.  So, I bought the tickets.  My husband and I had a wonderful night out at the concert.  The message here -- Don't wait for "some day".  Do it now, before it's too late.
  • Paul McCartney.  Same a Rick Springfield.  I went with a few friends, and had a blast.  Before cancer, I probably would have passed on the tickets.  Big mistake.  Don't pass on doing anything fun.  Don't wait until those "some days" become "I wish I had...."
Please forgive me if you don't see yourself in what I wrote.  You are all, every one of you, part of my village, and I absolutely love you for it.

During my talk, I touched on what friends and family can do to help.  The thing that comes to mind first is, don't ask -- just do.  The patient and the family are so overwhelmed and exhausted, thinking and making decisions are just too difficult.  Send a text and say, "Is today a good day for me to bring dinner?"  When you get the answer of "yes", text back and say, "Okay, I'll drop it off at x:xxpm.  If that's not a good time, let me know."  

Visit to Genentech

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, it was make-up and wardrobe time.  Yep.  Make-up and wardrobe.  These in anticipation of a photo shoot.  A photo shoot!  It was so much fun.  What's going to happen with these photos?  They're going to choose the best one, and make a banner with it.  Throughout the campus (many buildings make up the offices of this company), there are banners with patient pictures on them.  Some of these banners are three stories high.  Here is an article talking about the banners and how it got started: Larger Than Life.  More than one person who works there told me how inspiring it is to see the banners, to put a face to the medicine.  They also told me how inspiring it is, and how great it is, when they get to meet patients face to face.  I was so honored to have been there.

After the photo shoot, it was lunchtime, and time to get ready for my talk.  I had asked to keep it relatively small, as this was my first ever time speaking to a group, other than students in a classroom.  They capped my group at 60 people, and the room was full.  People signed up to hear me talk!  The topic I chose was "It Takes a Village".  Here are some highlights on my talk:  It Takes A Village. I hope that you all read it, and see yourself in it.

After I spoke, there were questions.  One person asked me how I've changed, specifically my sense of humor.  I talked about how I now have no filter (I speak my mind now; don't hold much back anymore), and my sense of humor has turned a bit dark.  We talked a bit about how you really need to laugh about the bad times, or you'll cry and scream all the time.  She said I seemed very funny, and reminded her of Melissa McCarthy.  So, now Melissa McCarthy is part of my village (click on the link to my It Takes A Village post above to see what I mean about my village).  One gentleman didn't ask a question, but wanted to let me know how they appreciated me being there, and how awesome it is for them to meet a patient who is on their medication.  Surreal, it was.  There were a few other questions and then it was over.  A few people came up to me before they left.  One lady told me that she'd been working there for 17 years, and was there when Perjeta went to the FDA for approval.  It was really something meeting her.  There was another very nice lady who is a fellow knitter.  While I was speaking, I talked about knitting and how it is therapeutic, and she got it!  We have since connected on Ravelry (knitting social media) and on Facebook.  Again, surreal.

While we were in San Francisco, my husband and I were able to get in some sightseeing and other touristy stuff.  We had Clam Chowder (him) and Lobster Bisque (me) in bread bowls at Fisherman's Wharf.  We saw the famous sea lions on Pier 39.  We took a dinner/sunset cruise; while circling Alcatraz Island and going under the Golden Gate Bridge we dined on filet mignon, and we danced.  We took a daytime cruise on a small fishing boat around Alcatraz Island and under the Golden Gate Bridge.  We walked on to the Golden Gate Bridge.  We rode a cable car.  The highlight of that ride was when we were stuck on a hill and the driver told everyone to get off and meet him on the other side of the street.  We walked on the beach on the Pacific Ocean (we brought sand home).  We didn't get to Lombard Street; we didn't get to the corner of Haight/Asbury Streets; we ran out of time.  We'll put those places first on the list for next time.  Simply put, we had an amazing time.

I hope I haven't forgotten anything.  It was a whirlwind, amazing three days.  I hope you enjoyed reading about it.  I hope you enjoy looking at the photos we took as much as we enjoyed taking them.  To see all of the photos, Facebook page (photos).  I've split the photos from the trip into nine different albums.

Saturday, September 17, 2016

Fair Fail

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 with that.  That's one reason I think it important to get out there and have fun.  The day is going to come when you can't do it anymore.  That day has come for me and my friend, The Scrambler. Now, I don't go to the fair every year, but when I do, I always ride the Scrambler.  This is the first year I didn't.

So, we walked from the entrance gate to where the food trucks were, got the stuffed ham sandwiches and settled in at a picnic bench for lunch.  Afterward, we walked once around the fairway, and that was it.  I couldn't walk anymore.  We sat down under the big white tent where a gentleman was singing and playing a guitar.  I was feeling a little lightheaded, a little queasy, and my legs just weren't going to take me all the way out to the van.  My 19 year old son, who was there with the Charles County Explorers, arranged a golf cart to take us out.

We didn't go through the livestock buildings like we ususally do.  We didn't go through the commercial buildings like we usually do.  We didn't go through the buildings to see the items that had been submitted and judged like we usually do.  We didn't stay for the pig races like we usually do.  We didn't have the fried oreos.  :(

So, the message is really the same.  Seize the day.  Have fun.  Don't float through life -- live it.  When the fair comes to town --- go, and enjoy it.  As we were leaving the fair today, I was thinking about how I had been coming to the fair ever since I can remember.  I remember going on Saturday night as a teenager, and riding all the rides with my friends.  Now I'm my parents' age when I was a teenager attending the fair, and my kids are the teenagers.  Live your life; it'll be behind you before you know it.  Don't blink.  ...and eat the fried oreos!

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