Snappy Satan vs. Chemo

I’ve been told on more than one occasion that I become “Snappy Satan” when I’m on chemo. Ok, so let’s examine the facts (in no particular order):

I’m mad that my own body is trying to kill me because it doesn’t recognize cancer as a foreign entity.

I’m mad that for the last 7 years, I’ve been in treatment longer than I’ve been in remission.

I’m mad that I may not see my son graduate from college and have a career as well as him maybe finding a wife and having some kids.

I’m mad that before I get dressed each day, my wardrobe is affected by the fact that I need to remember whether my port is being accessed or if I’m having blood work done at the local hospital. I very rarely get to wear sweaters because of this conundrum.

I’m mad that I need to drive nearly two hours each way to be treated for my cancer because it’s not an “average” cancer that a general oncologist can treat just a mere 5 minutes away.

I’m mad that I have virtually no appetite.

I’m mad that food doesn’t taste good.

I’m mad that taking a shower completely wipes me out. For that matter, just brushing my teeth takes a lot out of me, too.

I’m mad that I get tired easily.

I’m mad that I can’t sleep well.

I’m mad that I sleep too much (not quality sleep).

I’m mad that my family and close friends feel helpless at times because that’s what cancer does – it socks everyone in the stomach and most folks fall to their knees because cancer is just that mean and brutal. Whether it’s the first diagnosis or any number of recurrences, it all sucks for everyone involved.

I’m mad that there isn’t an adequate support group available less than 2 hours away.

I’m mad that there’s no early detection test for ovarian cancer because ovarian cancer is actually a bunch of different messed-up cell types and subtypes.

I’m mad that I can cry for apparently no obvious reason.

I’m mad that anxiety hits me out of the blue when I least expect it.

I’m mad that this cancer knows no age limits and has taken a lot of fabulous women in this world far too soon.

I’m mad that I’m not able to support those around me like I’d like to because I’m just too tired.

I’m mad I’m not able to get out and go snow shoeing or hiking like I used to. Heck, I’m mad that I struggle to walk to the cul-de-sac and back.

I’m mad that I can’t focus long enough to read a magazine article, much less a book.

I’m mad that I need to keep changing chemo treatments because this cancer just goes rogue and multiplies when it wants to.

And then there’s the chemo itself. This is poison that is put into my body while the nurse has gloves, a mask, and a disposable coverup on while I get infused while wearing my regular clothes. This poison isn’t smart enough to look for only the cancer cells. It attacks all rapidly dividing cells which includes healthy cells (thus the loss of hair sometimes). And no doubt it likely affects one’s mood as well.

One thing I’m proud to say is that I’ve never once wondered, “Why, me?” The thought has truly never crossed my mind. I am a genetic mutant (BRCA1+) and thus not surprised with the cards I’ve been dealt. But I can still be mad that this damn cancer still hasn’t learned how strong this gal is and I can be mad that this damn cancer seems to love a good fight.

So yeah, I’m not really surprised that I may snap from time-to-time in looking over the above list. I probably am “Snappy Satan” and if anyone gets offended with my short and direct manner, I will apologize here in advance. It’s not who I want to be. It’s not really you that I’m mad at because I have a long of other things to be mad about. It’s just really hard to keep it all together sometimes.

Thank you to those who have stuck around even in the presence of “Snappy Satan.” I appreciate you. 💜

 

Getting outside of my comfort zone

This past July, I had the privilege of attending the 15th annual Ovarian Cancer National Alliance conference in Washington, D.C.  I did not know a single person before going but I wanted to step outside my comfort zone and see what this conference was all about since I’d heard great things about previous ones.  The weekend was full of information about clinical trials, the latest research, and loads and loads of support from numerous organizations as well as fellow survivors.  I had the honor of meeting – in person – some of my “teal sisters” that I’d met through an online support group.  The energy and positive vibe throughout the weekend was fantastic.  I learned so much from other survivors from how to deal with side effects to how to deal with stress to nutrition guidelines to getting involved in advocacy.

We had fabulous speakers including the physicians with the latest research, people who spoke about their personal journeys or the journeys of their family members, and Jack Andraka also spoke to us.  He is the 15-year old who won the Intel award for developing a simple test (which only costs 3 cents) that has so far been 100% accurate in detecting pancreatic, ovarian, and lung cancers.  His test hasn’t yet been entered into human trials but he hopes to do that soon. He is a down-to-earth person who truly wants to find an early detection test for cancer and he may have found it.  I, for one, am very grateful for his research. If you would like to see a bit more about him,  please click the link: Jack Andraka Interview with Diane Sawyer   Our keynote speaker was Miss USA, Olivia Culpo, who had been crowned a few weeks before the conference.  Her mission for this year is to raise awareness about breast and ovarian cancers.  She is a very well-spoken, kind, and intelligent young woman who will work tirelessly to promote this awareness.

In conjunction with the conference, I participated in Advocacy Day. I went to Capitol Hill with about 70 other women and families – including Miss USA – to advocate for research dollars and to advocate for September to be officially recognized as Ovarian Cancer Awareness Month.  This was a totally new experience for me but it was very gratifying.  I met with the staff members of the Senators and Congresswoman from my state.  They were very receptive to my cause and listened to my story with concern.  I told them that mortality rates have not changed in the last 40 years for women dealing with ovarian cancer and that this cancer affects all ages including 3-year old girls, teenagers, women in their 20s, etc.  This is not an ‘older’ woman’s cancer.  The statistics are grim but hopefully, in some small way, I hope I’ve made a difference to raise awareness and get research dollars to find an early detection test for this insidious disease.

I felt like I had met a whole new branch on my family tree during this trip and I was so bummed when the conference ended because I really enjoyed meeting everyone and sharing our experiences.   Therefore, I jumped at the chance to attend a smaller conference in Boston this weekend that was organized by Ovations for the Cure.  Again, I went to the conference not knowing anyone. (As it turns out, I met up with a woman I’d met at the DC conference and there was also a woman from my church who attended.) It was a one-day event but it also provided information and I again had the opportunity to meet other survivors.  There was no cost for this event which was held at the Four Seasons in Boston.  The conference was very informative and we were treated to a fabulous lunch in Aujourd’hui. After all the poking, prodding, needles, surgeries, chemicals, etc., of the past year, it was so refreshing to have had this opportunity to participate in a local event and have lunch in a 5-star restaurant at no cost to me.

What I learned at both conferences is that there are a lot of women living with ovarian cancer.  I want to stress the word LIVING.  These women and their families have such positive attitudes and they do not let anyone rain on their parades.  They are intelligent women who ask intelligent questions and they will keep fighting to beat cancer.  They will find the best clinical trial or the ‘right’ oncologist to work with to get into remission. Some are fighting for their 2nd, 3rd, and 4th remissions.  They are the most open, considerate, and generous people that I have met.

Ironically, getting outside my comfort zone and meeting cancer survivors has provided a great deal of comfort to me.   My goal is to continue to help women and provide support just like the women who have helped me.  Yes, we are statistics but we don’t let statistics define us. We will beat the odds!

Advocacy Day 2012

Boston Lunch Menu

Miss USA Olivia Culpo and me at the OCNA conference

Ch-ch-ch-changes

I have a previous post about being a control freak.  Those days are long-gone and that’s actually a very good thing.  As I near the end of my fourth chemo cycle (I am scheduled for 6), here are some changes that I have noticed since starting chemo back in November:

* Shower time – I inherited my dad’s preference for long showers.  However, thanks to the Taxol, I have about only about 1/4 -1/3 of my hair on my head and I do not have to shave the pits or legs. (I still have eyebrows and some eyelashes so Taxol has been rather random with hair loss for me.)   Therefore, I  don’t have my long hair to shampoo, condition or deep-condition, and no need to shave.  So my showers have gone from a good 15+ minutes to….well….since I don’t have anything to do in the shower other than soap up and rinse, I can be done in 60 seconds.  I try and stretch it out to a good 5 minutes if for no other reason than to allow the warm water to finally flow through the shower head.

* Stares from strangers – oh, the stares!  I’m so over them.  Seriously, a scarf on my head does not indicate that my cancer is contagious.  This issue is about those people and not about me.  I hold my head high, stare back with a gentle smile, and they look away.  Those people have to be able to sleep at night with how they live and treat people.   Enough said about this topic.

* Taste buds – what taste buds????   Most food tastes like cardboard or paste (flour-and-water paste – not the industrial paste/glue that comes in a plastic bottle).  Oh, well.  I look for foods with texture right now like nuts, fresh fruit, and some super-high acid like lemon juice or vinegar so that there is SOMETHING to motivate the taste buds.  I look forward to being able to taste food again especially since I am a trained chef and baker.

* Energy – chemo has definitely taken a toll on my energy.  I am told this is normal but it is frustrating.  I do try and get some exercise on a regular basis and lift super-light weights so that I do not overdo it.  I also try not to get down on myself because I cannot do what I would like to do.  It is o.k.  that I cannot do as much as I want to and my doctor told me this.  She also said that I will bounce back quicker once chemo is over because I am exercising.  This information rings happy bells for me so I keep moving even though I am often lapped by incredible women and men who are twice my age. I look forward to being that active at their age.

* Sleep – what sleep?  O.K., a slight exaggeration here but my ability to sleep is all over the place.  Sometimes I can sleep straight through the night, other times I wake up a lot, and sometimes I cannot sleep at all.  I am working on this and am hopeful this will improve very, very soon.

* Family and Friends – a slight tease here – I am adding this because this is the one area that HAS NOT CHANGED.   My family, friends, co-workers, and managers have been steadfast in their support and I cannot thank them enough.  I am so blessed to have them in my life.

All in all, change is actually good.  I cannot control any of these things – nor do I want to – because it means that the chemo is working.  That is the goal. As far as I am concerned, I am pronouncing myself cured.  The remaining treatments are just insurance.   This is how I roll.  It’s not how everyone rolls but it works for me.  Some may call me naive, some may think I have bravato or conceit, and some may think I should be realistic and look at statistics.  What I look at is ME – my treatments, my lab work, and my attitude.  I don’t care about all that other stuff.  My goal from the beginning was to beat this.  I will not lose sight of that goal.

 

 

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