Casee Cullen

First post: Jan 15, 2019 Latest post: Mar 10, 2020
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Hi there everyone!   I was introduced to this site a few years ago with my brave friend BethAnn.  I found it to be a great tool for her family to update everyone and stay in touch during her battle with cancer.  (I would use the word journey, but it just pisses me off!  A journey seems like a fun thing to do or place to go....I like battle since there is a lot of fighting going on in my body!) 

I am blessed to have so many friends in so many places!  I want to be able to update you all daily via text, IM, Facebook etc...but its tricky!  I am not as tech savvy as I let on!  So I thought this main portal for "Kicking Cancers Ass Updates," was the way to go!  Please still text, IM, Facebook etc...I like to be constantly in the know!

I think most of you know that I have been diagnosed with ovarian cancer.  It was found at a late stage as most ovarian cancers are.  Its a sneaky cancer that doesn't rear its head until its done some harm...makes me hate it even more!  What we are finding is that I have a low-grade ovarian cancer.  yeah, I never heard of that either.  What it means is that it is not very receptive to chemotherapy.  It is slower growing, but...doesn't respond to conventional treatment.  So we need to get creative.   ( thinks it can outsmart us, makes me hate it more!) 

I am working with great doctors through Dartmouth Hospital and I trust them.  They have gotten my diagnosis and treatment up and running in quick fashion.  At this point I am going to have 2 rounds of chemo and see if there is a response.  Then I will have BIG surgery at Dartmouth to remove all the female organs, areas of the bowel that are affected, with a possible colostomy (really, more hate here!) and the omentum.  Expected length of stay 8-10 days in the hospital.  Glad I like hospitals...and know how to make friends with the nurses!   Then after that it gets vague.  The initial plan was for more chemo, but because this is a rare and apparently stubborn form of ovarian cancer we need to come up with a new plan.  It can possibly be treated with hormone therapy....sort of a watch and see if the cancer returns after it has been cut out type of thing.  The point being, if it comes back quickly the hormone therapy didn't work.   I will also have genetic testing.  As my medical friends know, cancer treatments are customized now.  They put multiple lines or layers of treatment together to suit the patient.  That's why I like medicine, it is not always a one size or one diagnosis fit all!

I am planning on getting a second opinion.  My doctors are amenable to clinical trials.  My understanding is that MD Anderson in Texas is a place that is very cutting edge with this and other rare cancers.  I guess I like the idea of Texas...everything is BIGGER there right!  Even cancer treatments must be BIGGER and BETTER!  There are also fantastic hospitals in Boston so Texas is not a sure thing.  The outlook for me is wide open....what I do know about myself is that I am going to fight for every second to stay alive! 

The diagnosis of cancer stopped me in my tracks!  I know that people get sick, I see it everyday.  I treat the sick...the sick is not me!  I'm pissed and sad and overwhelmed!  I'm sad for my family and friends.  I hate that they have to be scared and unclear of my future.  This just sucks!  I think there is a saying that in the darkest hours we see the brightest lights....the outpouring of love from my family, friends, co-workers (which are really friends) and strangers has been overwhelming,  What love and generosity I have experienced!  I love hearing from all of you and it seems like your texts always come in at the perfect time!  As you all know I love you, and I love talking to you...its like oxygen to me...i guess i'm a busybody!

I had the pleasure of wig shopping this week....which was awful.  One size does not fit all!  I think I might go with the hats until I get the hair figued out.  I found a better wig lady right here in Londonderry....Angelic hair my mom said, "Angels amoung us!"  She was so much better than the first place.  Seemed hip and you all know that is my vibe! 

I also had my first chemo yesterday!  It went good.  The chemo center in Nashua was great!  The staff and the nurses were fantastic.  I was there for 5-6 hours.  I think I felt the most side effects from the pre-meds....that are given to off-set the side effects of the chemo!  i mean I thought the nurse might have pushed them a little fast!  The first chemo infuses over 4 hours...I was so hot!  Some concern it was a reaction to the chemo, but I think it was the room temp!  Those skinny nurses had the heat way up!  I looked for the thermostat when I wen to the bathroom, but couldn't find it!   The second one goes over an hour....I was still hot!  I got a free lunch and a cute purple knitted a souvineer!  I'm home today with a bunch of PRN meds in the waiting!  So far no metallic taste or vomiting!  They told me first 24 hours all good....shit will hit the fan day 2-7.  Bring it on! 

I want the chemo to work, I want the tumors to shrink, I want to live as long as I can!  Send me your good thoughts and prayers, my arms are wide open for your virtual hugs!  We have to think positive! 

Sorry if this was a bit long...always a problem for me with college papers....tend to ramble! 

I have the BEST family and friends...if LOVE cured cancer I would be all set!  LOVE does cure a sad scared heart so thanks for all your LOVE! 

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