Continuing fun facts about me:image

21. Favorite movie? I have a lot so let’s just go with “The Shawshank Redemption”

22. I have a long list of favorite authors but Isabel Allende and John Irving are definitely up there.

23. Favorite color–hydrangea bluish purple

24. Favorite Food–pizza. I know it’s pedestrian but then, so am I–I think they skipped me in the taste bud department because food doesn’t really drive me. I drink very basic Chardonnay–a high price does not make it taste better to me.

25. I love running–at my peak, in my 40’s I could run a 7:30 mile. That is definitely in the rear view mirror!

26. I sort of like Country Music. I have satellite radio in Jeepy so when I am on a long drive by myself I like to listen to Highway Country–beer, boots, trucks and fighting. Somehow I find that uplifting. It also reminds me of my Dad. When I was a kid he listened to Johnny Cash and loved Glen Campbell–when I hear that music today memories rush in like a tidal wave. Speaking of country music, The Country Music Awards were on this week and I surprisingly thought the music was fantastic–Chris Stapleton and Justin Timberlake kinda blew my mind and who doesn’t love Reba? She makes me smile. (I don’t think it is working out for Steve Tyler, sorry Mary Ann)

Well I have heard from enough people that they like my blog enough for me to continue writing it (really it only took, like, 2 people).

image

Enough about me, on to the serious stuff. When last we spoke I was getting ready to start a new chemo via clinical trial after flunking my last chemo. It was delayed because my tumor tissue sample was sent to the wrong place and there were not enough cells so they had to go back to get more. How do you say ANXIETY? Dr. Rachel and I agreed I could wait one more week but that was it–we would start standard chemo if the trial was not approved. I was off treatment for a whole month!!!

A side bar for educational purposes: When cancer advances and spreads through the body, it can be managed for a while with targeted drugs, chemotherapy, hormonal agents or radiation. You must stay on a treatment regimen for the duration of your life, if only to prolong it a few months or years. Treatment fails when cancer cells gradually morph into a form that’s resistant to your medication. The cancer grows and spreads again. Alternate treatment may be tried, but eventually you run out of effective treatment. The cancer takes over and gets out of control. It destroys healthy tissue on such a wide scale that you’re no longer able to sustain life.image

Tuesday arrived with a lot of confusion as Tim and I muddled through Boston traffic at dawn to Cancer House.  I learned the day before I was not cleared for the trial because the tissue sample had not been tested for a gene mutation in time, so all those extra appointments I had lined up would be scratched. Hidden bonus/silver lining? I don’t need to fast before appointments, less blood work and tests, less time overall, and best of all–I can have my next chemo in two weeks on a Sunday and not miss another day of work!!!!! This makes me so happy. Really, you are happy about chemo? Well, you get the picture. After much love from Dr. Rachel we headed to chemo house (actually on the same floor) for my injections. They kept warning me about how painful it could be and I would need ice packs and Motrin. Do they not know I am a badass? It did not hurt, I did not need ice and it was fine. So fine that when we got our “get of  jail pass” we headed to the Public Garden to enjoy the 70 degree weather in November, WHAT? We sat and people watched,  our faces towards the sun, listening to the pigeons cooing and the rappers and preachers scattered about Boston Common. It is amazing how many people are not at work? What is up with that?

Anyway, so far so good with the Faslodex. Hot flashes are not new to me and I actually have an appetite that I haven’t had in months. I am off the cheezit and Zofran diet for now. Betty (my refrigerator at work) does not need restocking at the moment. It’s probably premature since it takes a while for the poison to build up in my system. Onward we go.image

Unrelated to all of the above, I woke up a week ago with a muscle spasm at the base of my neck. I ended up missing two days of work and Dr. Rachel prescribed muscle relaxers when the Percocet made me too loopy (or more than I am naturally). It has been an ordeal I do not need–hate missing work, taking more meds, missing the gym and generally miserable. In the middle of this we went hiking in the White Mountains with Bill and Carla to celebrate Bill’s birthday and mine. Weather was beautiful the first day, hike was strenuous but not bad, hotel was fabulous (well except for the weird restaurant hostess that kept eavesdropping on our conversations and butting in—-at one point she commented from behind a wall where we couldn’t actually see her–we did not know she was listening to our scintillating conversation about “all you can eat” restaurants, until she yelled out “Oh that sounds like a Mongolian Barbecue!” WTH? ) Anyway, the second day brought misty rain and cooler weather. We encountered a stream on our trail and decided to foolishly transverse it. Carla was skeptical stating the chances of one out of the four of us getting wet was likely. Yeah, that. Tim reached out and grasped my hand as I took to the wet rocks. I truly appreciate that he never let go. Of course I slipped and went in up to my knee after falling hard on my shin into a granite rock. It took a few minutes to realize my pant leg was wet with more than just water. Blood!! I think this is part of Bill’s overall plan to kill me first before the cancer wins. Really, I am okay and it was memorable. Dinner in the North End on the way home made up for it. Bad ass status in check.

image

imageimageimageA word about pain based on the above. I have lots of it on a daily basis. It did not occur to me that I imagewould wake up sick one day and never get better. That is what incurable cancer is. It steals your time. It does not give back. I was thrown into chemical menopause at 44. I was on a cancer medication for 10 long years that caused significant joint pain, stiffness and bone loss that required IV meds to contradict. I have arthritis the entire length of my spine, shoulders and wrists brought on by the degenerative changes of aging as well as spinal stenosis and a bulging disc. Why do I mention this? Pain is a part of living, being out there in the  world, being active, loving life. I do not complain about it because the great outdoors and physical activity have brought me so much joy. That I would not trade. Besides, I am awesome.image

I hate when I hear someone somewhere say that cancer was a “gift” that led them to appreciate life more fully. What?  I have plenty of appreciation of life without cancer added to the mix—-my beautiful daughters, my husband and my many friends and fantastic supportive co-workers. What I have learned is that my cancer brings out the very best in people. People want to connect and be in communion with me. I have heard from many former students and co-workers and long ago friends who want to remind me about something we shared or did, to boost my spirits, say hello or to pray for me. Bring that on! Especially moving to me is the generosity of spirit–taking time to write me a letter or an e-mail. A retired teacher has taken up painting and gave me  one of her beautiful framed paintings of a favorite spot in Borderland State Park. My former co-workers at PSMS send me well wishes and raised money in my name for my favorite charity, METAvivor.org without being asked. A colleague of mine set up a baked goods sale outside the toy shop to raise money for imageMETAvivor without being asked. The junior class is donating money from sweatshirt sales to METAvivor without being asked. All of this takes time. But love always shows up. I am so inspired by all of this. Tim Blanket says that I am the female George Bailey from It’s A Wonderful Life–I get to hear feedback and feel the love of so many before I am actually dead and eulogized. Cancer has given me that.

Love from the Monkey House,

Barbara, Tim, Kelsey and Bridget

 

My song: Take Your Time, Sam Hunt (I feel like it’s the cancer singing to me)

I don’t know if you were looking at me or not
You probably smile like that all the time
And I don’t mean to bother you but
I couldn’t just walk by
And not say hi

And I know your name
Cuz everybody in here knows your name
And you’re not looking for anything right now
So I don’t wanna come on strong
But don’t get me wrong
Your eyes are so intimidating
My heart is pounding but
It’s just a conversation
No girl I’m not gunna waste it
You don’t know me
I don’t know you but I want to

I don’t wanna steal your freedom
I don’t wanna change your mind
I don’t have to make you love me
I just want to take your time

I don’t wanna wreck your Friday
I ain’t gunna waste my lies
I don’t have to take your heart
I just wanna take your time

And I know it starts with hello
And the next thing you know your trying to be nice
And some guys getting too close
Tryin to pick you up
Trying to get you drunk

And I’m sure one of your friends is about to come over here
Cuz she’s supposed to save you from random guys
That talk to much and wanna stay too long
It’s the same old song and dance but I think you know it well
You coulda rolled your eyes
Told me to go to hell
Coulda walked away
But your still here
And I’m still here
Come on let’s see where it goes

I don’t wanna steal your freedom
I don’t wanna change your mind
I don’t have to make you love me
I just wanna take your time

I don’t have to meet your mother
We don’t have to cross that line
I don’t wanna steal your covers
I just wanna take your time

I don’t wanna go home with you

I just wanna be alone with you

I don’t wanna steal your freedom
I don’t wanna change your mind
I don’t have to make you love me
I just wanna take your time

I don’t wanna blow your phone up
I just wanna blow your mind
I don’t have to take your heart
I just wanna take your time

No, I ain’t gotta call you baby
And I ain’t gotta call you mine
I don’t have to take your heart
I just wanna take your time

 

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Written by barbigelow

Wife, mother, school psychologist, cat lover

8 comments

  1. How ironic that such a shitty disease really brings out the best in those around you. But it has. So much love! You continue to be in my thoughts–when I read these blogs I am reminded of just how incredible you are, and how fortunate I am to know you.

    Liked by 1 person

  2. Barbara – I wish you were at OA when I graduated in ’87 – you are an an amazing asset to that school and an incredible writer. Please keep writing – I am following your blog. I am a stage 2a survivor, diagnosed at 44. I will do what it takes to raise awareness for Met survivor causes – and I have a loud voice. I am originally from Easton and there frequently – now living in Texas. Please know – you have prayers and admiration coming from Texas. You are badass and I would love to meet you sometime. Keep writing and being badass. Sincerely – a huge fan – Ann-Margaret

    Liked by 1 person

      1. Forgot to add that my mom is a Stage 2 survivor as well and lives in Easton. My family owns Easton Pool & Spa so if you need a thing – just give us a shout. My email address is amhdudley@yahoo.com. Again – so wish you were there at OA. My old english teacher at OA told me and my dad (who was a former school administrator) when I was a lazy, unmotivated high school junior that “college would be tough for me as I likely had a learning disability”. I went on to graduate with honors from law school. OA back in the day was not what it is now…and glad you all are doing so much to support those students.

        Liked by 1 person

  3. BJ – Sheila shared your blog with me – Sadly I had no idea of all that you have been going through and I am so sorry to learn that you are battling Cancer once again. I love seeing all the wonderful pictures on your blog, and I have only skimmed the surface as I just logged on today while at work. I work for South Shore Hospital for the Charitable Foundation as an executive assistant to the Vice President and am also the office manager of the Foundation, I truly love development work especially for non-profits – it is very fulfilling. While I hope to connect with you further and look forward to reading your blog and supporting you in any way I can on your journey – I must share share with you the tragic loss of my husband. Gary passed away unexpectedly on June 23 of this year and like you, I am blessed to be surrounded by wonderful friends, amazing family and supportive past and present co-workers. I will keep you in my thoughts and prayers. Fondly, Diane Hufnagle

    Like

    1. Oh Diane I am so sorry to hear of your loss, I have no words, just heart breaking.
      Your job sounds perfect for you, such an organizer! I hope it brings you some comfort.
      I will keep you have in my thoughts,
      Barbara

      Like

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