The Network

A couple of days ago, I had one of those dark days filled with fear and sadness. It’s harder some days to rise up. That’s the way it is living with cancer – that internal chatter is harder to shut out some days. It can come on for no reason other than a lack of sleep and some new pain, and thus starts the downward spiral. Then pile on other emotional challenges – family stuff, sick friends, work and financial challenges… it can be overwhelming. Anyway, I had one of those days earlier this week. I’m coming up for air now, but it’s not a quick bounce back ever. But here’s where I want to focus – the power of a network of people. I decided to “say it out loud” this time (I don’t every time) and the response was nothing short of amazing.

It’s interesting, of late I’ve had 4 different friends reference the concentric circles or the Ring Theory when dealing with a crisis (and they were in reference to different types of crises). So for those of you who overlap friends with me in several ways, apologies for repeating this but I do think it bears repeating. It is based on an article released in 2013 by a psychologist and her friend. The basic premise is that the person in crisis is the center circle, and the network of support (family and friends) is in concentric circles from there, “close” to “less close” as the circles expand. This is the Kvetching Order. You should only “comfort IN, and dump OUT”. Here’s the original article if you’re interested (Ring Theory). So the center can dump and share as far out as s/he likes, but if you need to scream or cry or complain or share how you feel about the crisis, you can’t do that with someone in a smaller circle (and definitely not with the center). The role you play with smaller circles is help and comfort. It’s a phenomenal article and an important look at how to best help someone in crisis. And here’s the thing, this week, I had so much clarity about this. I reached out, and I got literally hundreds of responses from you. I know many of you are scared when I’m scared, and you have your own stuff in your life, and some of my closer rings surely have their own stuff about me and how this affects them, BUT WHAT I GET FROM YOU IS ALWAYS ALWAYS COMFORT. And power, and support, and strength, and light, and love. And I am so grateful for that and for you.

I wish I could send that amount of love right back out to you, all the comments, and prayers, and uplifting words, all of it. I don’t see how that’s possible but I will do what I can. And today I want to share 2 things that really impacted me. The first, from my long long time friend Melissa, is the cover picture of the blog today. Wow. Such powerful words. And the other came from another old friend from college, Beth.

Yes yes yes. So I’m taking deeper breaths and telling myself I’m okay today. And I am sending all the love right back out to you. My numbers continue to look good even though it bounces around a little (shut up brain chatter) and other than the neuropathy, I continue to handle this protocol well. So I’m still Kicking Cancer’s Ass, a day at a time.

Now for a few fun updates… I won a trip to Mexico at an ovarian cancer fundraiser a few weeks ago (Georgia Ovarian Cancer Alliance – Shaken, Not Stirred). So we’ve got a real vacation coming up and I couldn’t be more excited! Our friends Cort and Candace joined us at the last minute. It was a wonderful evening!

And because we don’t have enough stress, we’ve decided it’s time to get serious about downsizing – reducing our expenses and simplifying our lives some. So send us all the positive mojo for an easy process!

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The other side effects

Some of these blogs lean more to the emotional and mental aspects of dealing with this disease. Today, it’s all physical (which of course impacts the others). Seemed to be a good time to provide a little education on some of the other side effects. You might not want to read it – I mean I don’t want to feel it so I’m not sure why I think sharing it makes sense, but I do think it’s important information… so read at your own risk. Most people think of chemo side effects as nausea/vomiting, diarrhea (although as I’ve mentioned before, constipation can be just as bad if not worse), fatigue, and hair loss. Those are in fact the most common side effects and ones I’ve learned to manage pretty well over the years – I usually know when it’s coming and can at least offset it some with meds and rest. But for the first time in 4 years, 6 months, and 6 days (but who’s counting), I am dealing with neuropathy and fingernail issues.

First the neuropathy – it’s pretty common for the drug I’m on now, but I’ve been on a very similar drug and not had any issues. We’ve tried a couple of meds and it does seem to help some with the shooting nerve pain in my feet, but not with the numbness. My feet tingle all the time – almost the entire bottom and some of the top of my foot. I am taking some supplements that are supposed to help, and considering some additional acupuncture (although insurance doesn’t really cover much of that and it can be pricey), and I wear ice packs on my hands and feet during treatment. Trying ALL THE THINGS. Maybe they are helping? I mean I can still walk, but it’s super annoying. It’s that feeling you get when your foot has fallen completely asleep and is waking back up. Yeah, good times. I have a wee bit in my fingers as well, but not as much.

But the fingernails – wow, this is such a huge issue at the moment. Fingernails and toenails are much like the hair and those cells can be killed with chemo. I’ve had dry cracked nails some, but now, they look bruised and are quite painful. I wake up in the night with throbbing fingernails. And forget about opening anything like a yogurt container or something similar. Even picking up a bag of garbage puts stress on your nails and is painful. And hot water – you know, for showering and washing dishes and such – feels like hot water on a sunburn. OH, AND TYPING, you know, with your fingertips for random things like WORK (although it clearly didn’t stop me from blogging). I suppose I could lose some of them (GROSS) but I really hope not. And also, they are super pretty to look at, see below.

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So listen, this isn’t life threatening, and being ALIVE with painful nails and numb feet is far better than the alternative. But as I’ve said before, it’s surely not nothing.

Other than that, I’m doing well overall… looking forward to both the OCI Galentine’s Day fundraiser on Thursday night and the annual GOCA gala, Shaken, Not Stirred this weekend. I’ve had a few calls from people saying they saw my picture in a local neighborhood magazine. This is from last year (and this particular article is from the February BuckHaven Lifestyle magazine). I love these people – my sweet and powerful survivor sisters. I could not do this without their love and support and guidance.

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And finally, I’ve been reminded again and again how powerful and wonderful my support network is, and you are. So many of you have touched my life in amazing ways – know that it makes a huge difference in my life. ‘Thank you’ never seems to be enough but know that my gratitude is heart-felt and oh so deep. You truly do lift me up. Send some of your good mojo next week – I need that CA125 to come back down so we know this cocktail is working!

Left happy

It was a long morning but after 6 pictures and an ultrasound, I left happy. And also Left is happy. They didn’t see anything of concern. So relieved. Thank you so much for your support!!

The Head Olympics

I mean seriously, why is it called a “head game”? This is no game. I thought Olympics got a little closer – athletes that train their whole lives for 1 moment. Such is the cancer head game – it requires constant vigilance for warding off fears. And just when you think “WOW WHAT AN EXCITING YEAR IT’S GOING TO BE!!!”, something creeps in to make you doubt that. Look, it’s hard to get to positive on the best of days for cancer patients. I thought I had the gold medal for attitude. And then I saw my doctor today. He usually does a breast exam during my monthly visit, and this time he paused on my left boob, let’s call her Left for now because I’m not feeling so creative. He asked when I had my last mammogram – I think it was the spring but I can’t ever remember. I just know I get them annually now. He decided we needed to “move that up” since he felt some thickening in Left. Great. So I have a mammogram on Friday. He did also say “it’s probably just some polycystic blah blah blah” but I didn’t pay much attention to that. I did google it though. Not a great idea because it’s all about ovaries and breasts. But I think his intention was to put my mind at ease. Yeah ok. I would be lying if I said I was feeling “at ease” at the moment. But I am trying hard to remember a few things:

  1. Fear really isn’t a productive emotion.
  2. I JUST had a clean scan that included my chest.
  3. I am on a strong chemotherapy and adding Avastin tomorrow.
  4. Left was previously injured by my “deck swan dive” this summer so it could be scar tissue.

Oh, and after I left I found out my CA125 had a “little bump”. It went from 11 to 16. That doesn’t sound like much, in fact, they aren’t usually concerned unless it doubles. But that’s half of a double and my CA stays in the 11 range, so NOPE, NOT AT EASE. I’m mostly pissed. I mean, I am feeling so good about where I am right now. Can’t I just have this moment without some “iffy news” in the mix? The Head Olympics – it’s not for the weak of heart. I totally get how some people just stop, just give up. I mean, I’m not going to do that, but I do understand it. It’s hard.

Sidebar – sometimes it feels like I’m oversharing when I put these out – like you don’t really need to know every single detail of my life. But I committed to keeping this real from the beginning, hoping to give some insight into living with cancer, or at least what it’s like in my head. I follow some ovarian cancer blogs and Facebook groups, and I can tell you that FEAR is the number one topic. It’s been the topic of many of my blogs as well. Clearly I haven’t mastered it yet, but hopefully I’m getting better at it.

Anyway, I could use your positive vibes and mojo and prayers and spells and love right now. Because the medal winners in these Olympics don’t do it alone. They do it with all their people cheering them on. Thanks y’all. I’ll update when I know more.

Happy New Year indeed

Made it through another holiday season! You know, many of us say that every year. As you can imagine, it takes on a completely different meaning for me now. Yes! In fact I kicked cancers ass through another year! And this year, really I mean it the “other” way too. I am super tired from an exceptionally busy month for me. Mostly just the usual holiday things but also a caretaker who needs some caretaking herself so it’s been a little tough at times. You know you’re in trouble when I’m the most able-bodied one! So after some birthday celebrating over the next week, I’m planning to rest some. Well I’m hoping to rest some anyway.

The year has started with really good news all around for me. My late December scan was very good. My doc said he was very very very pleased with the results – everything is smaller so the chemo is working. And he really believes when we add the Avastin, it will take care of it all.

Which brings me to the next piece of good news. The infusion center nurse practitioner just stopped by (it’s chemo day) and said the Avastin has finally been approved and will start with my next cycle which is 2 weeks from now (next week is my off week yay!)!

I’m not sorry to say goodbye to 2018 – between the surgery and ICU experience and this very scary recurrence, it was a tough year all around. So I am letting go and moving forward to a fabulous 2019. I am holding fast to hope for this year – clean scan(s) and back to an oral maintenance drug.

Hope, Love, Joy, Peace… also my wish for all of you. Thank you for loving me through a rough year and celebrating my good news with me.

Five Christmases

Yes, five Christmases in treatment. While the first thought should be “wow I’m so excited to be here and doing well”, in reality the first thought is WHAT THE HELL? I’ve talked before about the holidays. They are both reason to celebrate and quite depressing. Yes, it’s great to start talking about “five years”. That anniversary is still 7 months away and really the “five years” timeline is typically used in reference to ” cancer-free” time and marks a milestone that loosely translates to “better odds”. For me it will just be that I beat the odds for the five year survival rate. I hope that’s the first of many odds I continue to beat. But there is a lot to celebrate this season for sure.

My numbers are good – my CA125 is down to 11 (this month and last month), and I really feel good. Now let me qualify that, I feel good for someone in regular chemo treatment – which includes a fair amount of fatigue and loads of physical issues ranging from constipation to hearing loss to arthritis. My energy is really good at the moment so we’re doing a lot. Which of course helps me get in touch with my level of fatigue more completely. But we’ve had concerts, and parties and events and we’ve really gone all out decorating and baking this year. I think I feel better this holiday season than I have since this started. Or at a minimum, in a long time. That is very exciting! But it also makes it harder for me to pull back when I should. I have to be careful with that.

And then I still have that little voice that pops up…

“Is all this “big and awesome” about the holiday season because it’s my last?”

“It’s good right now, so when is the other shoe going to drop.”

I find it interesting that while cancer forces people to take inventory and look at their lives and how they have lived, it also sometimes makes it harder to fully enjoy the beautiful moments. I absolutely have a much greater appreciation for what I have – starting with my family and friends. I am more focused on gratitude and love than I was before. But it’s also true that it is very difficult (at least for me right now) to completely enjoy the happiness and joy. It seems that little voice is always there, sometimes pretty faint, but it’s there, asking those scary “what if” questions, reminding me just how awful late stage ovarian cancer is, popping up every now and then, to try to dull the shine. And sometimes it’s just too hard to fight it, so I just take the time I need to be with it. But most of the time, it’s a fleeting thought and I can beat it back and refocus. In the end, the mental battle is huge. And so important. Sometimes it’s the hardest part, maybe even often. And sometimes when you’re tired and sad, you just give in to it and ride it out.

So yeah, I’m in a great place – the chemo is working and I’m handling the side effects pretty well. And it’s still scary as hell and hard and sad and painful. I’m not looking for your pity here, just doing as I promised, keeping it real.

Scan coming up in a few weeks and am praying the scan matches the CA125, and that it is clean! Will certainly update then if not sooner.

Have a wonderful holiday season. Love your people real hard. Say “I love you” out loud. It might feel a little awkward but you’ll get used to it. This is the stuff that matters.

Tired but good

First, a note about the picture featured here – I’m doing some work on the business and decided to get new headshots and some casual photos. This is one of them. 3 days before I lost my hair. A huge thanks to Colleen Hight at hightphoto.com. I couldn’t be happier with these pics!

It’s been a minute, so I thought an update was in order. I’m sitting in the infusion center feeling a little sorry for myself. I’ve just canceled plans for tonight with one of my favorite people and also canceled a short trip we had planned for next week that included another of my favorite people. I was really looking forward to both but I’m feeling the fatigue start to creep in, and with my chorus commitments and the holidays coming up, it was the right thing to do. Blah blah blah right thing blah blah. I’ve tried to explain it before but the fatigue is not like normal tired. It’s not like lack of sleep tired. It’s not like ran a race tired (which I know from all my racing days of course). It’s not even like new mom tired. It’s like trying to move through quicksand (which of course I have also NOT experienced but it seems on point), like moving your arm to scratch your nose is exhausting. And really nothing fixes that. Sleep can help some. Rest can help some. So that’s my plan. Weekend retreat with the chorus (YAY) with some rest on both sides. And quite frankly I’ll rest as much as I need to there too.

I signed some additional paperwork for the Avastin this week so I’m hoping to start that next cycle (starts Thanksgiving week on Wednesday then back to Thursdays). I’m guessing the insurance path where it SHOULD be handled is dead because it looks like we’re going direct to the manufacturer for it. Again so blessed to have a Dr that just won’t take no for an answer.

So yeah, I might feel a little sorry for myself but then I look around in here and realize how fortunate I am to be doing so well. My number went up to 57, then down to 31, and now it’s 13. And other than some chemo fatigue I feel pretty awesome. I’m looking forward to my week off of chemo next week. And some needed downtime.