I’m Still Here

I’m writing this for me. I’m not even sure I want to post it. Because I’m not looking for pity. I’m not sure I’m even looking for prayers or support. I just need to write it.

Important side note: I had Chinese food last night and my fortune said something about always being surrounded by many friends. Yes. And that is a huge blessing. As is my family.

But I’m in a funk for sure. It’s circumstantial. Everything is a mess. We still don’t have floors. We’re losing the fight with insurance so far. We’re struggling with money. One of our “other boys” has all but moved in with us and is struggling himself. And my number went up noticeably (albeit not significantly) from 23 to 28. So it’s a bump – is it the beginning of an increase or just a one time blip? Who knows. It’s hard not to assume the worst given our situation of late. And is the stress making my cancer spark to life or is it the other way around? It’s been a hard year with the move and losing another close friend to this disease so all that has an impact I know.

And let’s talk about Christmas for a moment. I had a pretty sobering aha moment this holiday season – call it white privilege or just a new perspective… We all say, it’s not about the gifts, it’s about time with people you love, it’s about celebrating the birth of the Christ Child. But when you don’t have the means to provide gifts, you quickly realize it IS about that too. We ask each other about what gifts we received or gave, not about how much quality time we spent with our loved ones. It’s just a whole lot easier to say that it’s not about the gifts when you actually DO have them. Imagine not giving a gift to your wife or husband at all this year, or your kids. Thankfully we were able to give our kids a little money (canceled a trip so we could do that) but we had no gifts for each other, no stockings bulging at the seams, no gifts to unwrap or bags to shake under the tree. We really didn’t even have a tree, just this pitiful Charlie Brown-esque tree on a table. We didn’t decorate because we weren’t really feeling the season and because we’re still not really moved in because of the floors. And it all did make me pause and think about how blessed I’ve been my whole life. I never thought I couldn’t get what I needed or wanted, or provide for my family, or fill stockings and buy gifts.

So as I watched all the ads for the things we should buy our wives and husbands and kids and friends, I found a deep compassion for the mother who can’t buy her kids the latest toys or electronics. And I can’t help but think about how many people in this city, state, country, and world can’t buy gifts for their loved ones every year. Not to mention the homeless and destitute who can’t even provide the basics. So yeah I’m grateful we don’t have to live under a bridge. And I’m grateful that we have all these things that we need and want.

And yet, I’m sad I couldn’t do things this year. I have such an amazing wife and love of 22 years. She has had the burden of caring for me and seeing me through this shitty ride with cancer for the last fiveandadamnhalfyears. And still I can’t buy her those air pods or those shoes this year. And it was just weird and sad to not create a special even small Christmas for our boys. Or do some little things for the rest of our family and special friends. Of course everyone understands but it’s still painful and hard and really made for a difficult season for me.

Mostly I’m just tired. Physically and emotionally. Everyone keeps saying it’s going to get better. And I sure hope that’s true. But it seems like every time we take some steps forward, we get smacked back down by some other setback.

And here’s what I’m tired of hearing. And I mean no offense to anyone. I am fully aware it’s hard to know what to say. But I also think it’s important to think about the words we use when someone has hit a rough spot.

  • “Well it could be worse”. Of course it could. It could also be a whole lot better.
  • “God doesn’t give us more than we can handle”. Really though? Even if that is true, just don’t.
  • “I know it’s a lot, but…”. When you say something then include a “but”, you’ve basically negated or minimized what you just said and it feels like minimizing my feelings.
  • “You have to keep that positive attitude”. Yeah I’m trying. You have no idea how very exhausting that can be.

Try this on instead:

  • “I’m sorry. I know this sucks”. Really sometimes I just need you to acknowledge my pain in the moment. Don’t try to fix me. Just hear me.
  • “What can I do”? My family and friends are great at this one and it is perfect. And we’ve been better about asking for help when we need it.
  • “When you can’t believe it’s going to get better, I’ll believe it for you”. This one is really good. Many of you say this to me on the regular in some form or other. And it does help.
  • “I’m here. You can laugh, cry, scream or just be. I’ve got you”. We also have a lot of this in our lives.

I do realize how blessed I am. I’m still here, living my life, beating the odds. And I am grateful for the massive amount of love and support. AND (not “but”), this all still sucks and drags me down. I just want things to be easy again, or at least easier. Maybe if it had never been easy, this wouldn’t be so hard. Whatever the reason, I am ready for all my good to come my way. Like soon.

When Gratitude is Hard

I spent my first 51 1/2 years living a pretty awesome and amazing life. It doesn’t mean I didn’t have stress and some hard times (or so I thought then), but I was raised in a loving family, got a great education, had jobs I loved that paid well, found the love of my life, have amazing kids, and always had more than I needed. I lost my dad too soon to Alzheimer’s and still miss him every day. Other than that, I never experienced real grief in my life, or a lot of emotional or financial stress. I took a lot of that for granted. I was grateful but I never had to work at it. I was born with a glass half full attitude and it has served me well through any stressful and difficult times, honestly even through the early part of my diagnosis and treatment.

I’ve definitely had my dark nights of the soul over these last 5 and almost a half years. And I’ve struggled with gratitude in those times. Thanksgiving is always a challenge – the season of “… but cancer” as we all really focus on gratitude. And this year is probably the hardest yet.

It’s not just the cancer – although I have become intimately familiar with grief (having lost 2 close friends in 2 years) and fear because I’m definitely not in remission and might not ever be. Per my last scan (last week), I have multiple spots, 3 of which they are tracking. All 3 of those grew slightly – not enough to cause alarm but enough to watch closely. My number is pretty steady in the low 20’s but that is up from my standard low 10’s for 5 years. And I am really feeling the pain of so much treatment over these years… so much pain. So I’ve definitely had worse moments during all of this. But I’ve also had better.

But we’re also dealing with major house stress. Since the time we decided to move in March, we’ve been in house hell. Contractors in the old house making some changes, de-personalizing – changing our “home” to a “house”, loads of showings that required a quick escape with the dog, hard negotiations on both the selling and buying sides and finally a fast turnaround close and move in 2 days. If that weren’t enough stress, we have had significant issues come up since we moved in 8/1. And it’s been a construction zone ever since. Day 116 of thick layers of dust, bare concrete floors, rooms that couldn’t be accessed or used, etc. It’s all a very long story, but what’s clear is that this really isn’t a home for us yet. Hell it’s not really even a house. Let’s call it a dwelling.

Home is important – it’s a centering place, a foundation, a safe space. And we feel “home”less. I would never compare this to someone who truly has nowhere to go. We have a house. We just don’t have a home yet. And it is depressing and stressful and frustrating. It affects my half-full glass. It affects my ability to work (you know, make money). It affects my ability to manage stress. It makes it harder to kick cancer’s ass. And it really makes gratitude exceedingly difficult. So many times we’ve thought “ok this is it, now it’s going to turn for us… money will flow, the house will become a home, the cancer will become easier to manage, etc. etc. etc.”, only to hit yet another wall. I don’t understand it. I don’t get the bigger picture here – and I never really struggle with that.

So yeah, I’m struggling to be grateful right now. I know I have so much that is amazing and beautiful in my life. Right now, it’s just harder to be grateful for all of that light and love when I can’t quite see through these clouds. And every time I think there’s a ray of sunlight, some new storm blocks that light again. I’m pretty over all of it. I know this will all pass. I’m just hoping to find a way to maintain some water in that glass of hope in the meantime.

Stable… but

I had a scan earlier this week and saw my doc yesterday. The best way I know to describe the discussion was “stable but”. I have multiple spots of cancer throughout my abdomen/pelvic area, and they are specifically tracking 3 of them. All 3 of those spots had slight growth. It’s sort of within this 15% threshold that they consider a “watch but don’t panic” result. So “stable-ish” or stable on the not great side.

Call it what you will, it wasn’t what I wanted to hear. And quite frankly I’m pretty over that. My head keeps going to this place “people like this don’t live long with this disease.. if they can’t make it go away, eventually it takes over”. Yes I know I’m not “people” but it’s still pretty discouraging all around.

I’m just so tired of it. Tired of being in treatment. Tired of having to fight fear. Tired of always having to work so hard to find the positive. Tired of being tired. I’m even a little tired of celebrating something that starts with “well at least it’s not…”. Yes at least it’s not spreading. Yes at least there are no new spots. Yes at least it’s mostly stable.

Yes I’m not other people. I’m kicking cancer’s ass. Most of it’s ass anyway.

Scan again in 2-3 months and see where we are. If it continues to grow some, I’ll be back on the heavier chemo again. Will keep you all posted. Thank you for your love and support always.

It’s Still Scary

I had labs drawn today and I’m scared. Yes, I’m scared a little every single time, so for you, this might be a “yeah ok” moment, you know, the girl who cried wolf. But sometimes the fear is bigger. Today those reasons are because I’m having some pain, bloating, and general gastrointestinal issues. Is that the med I’ve started taking for my overall arthritis pain or is it cancer growth? I’m also at that place where I’ve been lulled into some level of security with a “currently stable disease”. My hair is growing back, my nails are almost healed, and I haven’t been sick, in the hospital, or had a bad scan in a while (#knockingonwoodrightnow). For me, that doesn’t ever seem to last very long. My cancer gets kinda bored with the same drugs for a long time and thankfully a change usually kicks it back to stable (sadlynnot really remission or gone YET). 

And then I’m reminded how powerful the mind is and I’m scared about being scared. That’s where my head is today – that I can make this worse just by being stressed and scared. I have to remind myself to live in THIS moment and to be grateful for all that I have in my life at THIS moment. As Maya Angelou once said ““We spend precious hours fearing the inevitable. It would be wise to use that time adoring our families, cherishing our friends and living our lives.” Yes. Do that Ann.

But I wanted to share the fear with you. People look at me and comment on how great I look, and I do feel pretty good overall. So I guess I thought it was important to say I’m scared. Know that anyone dealing with cancer, active or even in remission – they might look and feel pretty good, but we all know that can turn on a dime. That fear is real and hard to control some days. For me it can be particularly difficult because I know there is cancer there right now – this drug is just keeping a lid on it. Hopefully that lid stays on…

Thanks for checking in on me. Send peace and light my way. I have a scan in 2 weeks and will keep you all posted on the status.

Enough is Enough IS SERIOUSLY ENOUGH

This is totally a “why me” blog. If you’re not feeling up to that, it’s ok to skip this one. I just need to vent.

I really do believe that I am on my path. This is where I am supposed to be. I don’t really understand why but I have to trust that. Having said that, I think a giant WTF is in order here. When we made the decision to downsize back in March, we started on a part of this path that I never could have imagined.

We knew we had some work to do to thin out our belongings and update our home some (which we hadn’t done much of in the 18 years we were there). We had contractors in almost every day for a month followed by countless showings before getting the offer we wanted. And we immediately fell in love with a house to buy. Timing was going to be perfect.

Cut to today. We closed and moved in on August 1st. And we have had contractors in almost every single day since then. One bathroom remodel we planned, and so much we did not. A roof leak, a problem with both a/c units and 2 major plumbing problems. MAJOR. We have slept in recliners for the better part of a week, some of that without a/c. We have had no access to the bedrooms for several days at a time. We have had no access to the kitchen or den for a week. The house has been a construction zone since day 1. Nothing says GOOD MORNING like a jackhammer in the next room at 7am. And in the end, we will have replaced every bit of carpet, tile, and hardwood in every single room and hallway except for the den and foyer. And almost every wall will have been repainted.

construction

The area formerly known as our living room / dining room.

Yes I suppose there is some silver lining in a full remodel, much of it covered by insurance. But plumbing repairs generally aren’t covered so we’re coming out of pocket far beyond what we expected (or quite frankly can afford) right now. Not to mention how difficult it has been to do any work while managing multiple contractors and insurance people, oh yeah, and did I mention the noise?

Why wasn’t any of this discovered with the inspection or noted in the required disclosures? Good questions. We have our suspicions about what happened and believe that much was covered up. But that’s not the same as proof so unfortunately there’s really nothing we can do there.

Anyway, I’m afraid to say we’re reaching the end of this – that we can finally settle in to our new home in a few weeks when this last “rebuild” is complete. Every time we’ve said that, something else has happened. I won’t lie, it’s beaten us down. Over and over and over. Oh and remember I have cancer, am in treatment, and operate at far less than 100% every single day too. I mean seriously it’s time for a giant break. My number has been up some – is that stress and inflammation from moving boxes etc. or is cancer blooming again? I get stressed out about how stress can impact cancer. Yes. I’m stressed about stress.

There is much to love about this house. And my life is so much better than so many others. I have such an amazing support network. So many of you checking in all the time. And friends that have come again and again to move boxes, clean up, and help us with projects. And they bring food, wonderful gifts (thank you for the awesome fire pit seating Alicia, Skody, Alison, and Trisha), and give us beautiful gifts of their time, talent (I’m looking at you Missy), and love. And lots of wine. I really don’t know how we could be managing this without all of you. Thanks for helping us keep it all together.

As I sit here, I’m waiting for yet another CA125 result. I had my first appt with my new doctor and it didn’t go as well as I had hoped. I have communicated my concerns and hope that this transition can move forward more smoothly. I have a scan scheduled in early November. I’m worried about it. But I’m always worried about it.

Thanks for your support all the time. Send us some “give them a damn break already” mojo please.

Ovarian Cancer Awareness Month… AGAIN

We’re 5 days into September and I haven’t mentioned Ovarian Cancer Awareness Month. This is my 6th trip through this month since my diagnosis and there’s good news and bad news. The best news is that I am still here, very much alive and very much kicking cancer’s ass. In the broader good news, survival rates are up since I was diagnosed. I think the 5 year survival rate then was in the mid-30% range, and today it stands around 47%. How sad that THAT is good news… still over half of the women diagnosed don’t live 5 years. Research is still so far behind some other cancers. It’s definitely getting better but WOW, not fast enough. Women are dying. My friends are dying. I’ve lost 2 very good friends (and several other friends of friends) just since I was diagnosed. I miss my FOC sisters so much. Every single day. Sadly we proved out that statistic – there were 3 of us, now there’s me. So very sad…

I’ve still not found the right words to convey my frustration with October pink month. It’s EVERYWHERE. And listen, IT WORKS. Keep doing it. The survival rates for breast cancer are dramatically better than 10 years ago (5 year survival rate across all subtypes and stages is right at 90%). That changed because of education/awareness and funding for research. We can and should do the same for the teal sisterhood. I’ll sit out my usual tirade about how boobs are sexier than ovaries and what role that plays, wah wah wah. But you get my point – help bring that focus to Ovarian Cancer Awareness. WE NEED IT!

This month I’m trying to wear a teal ribbon every day, hoping it will prompt a question and discussion. And I support both the Ovarian Cancer Institute (research focused) and the Georgia Ovarian Cancer Alliance (education/awareness) with my time and money. My challenge to all of you is to do the same. Talk about it with people you know. Hell, talk about it with people you don’t know.

KNOW the symptoms and SHARE it. We can all help save lives.

Symptoms-of-Ovarian-Cancer-f

My scare this last month was a good reminder that this disease is always there – thankfully that was just a scare and my numbers came back down, but I’m fully aware that it can change on a dime. So today and every day, I am so grateful for the love and support along the way, and for the team of teal sisters who walk with me here and beyond.

If you feel so moved, you can donate to OCI (foundation started by my amazing doc) in honor of OUR Month. Donate to OCI – I am so proud of the work they are doing and how close they are to a diagnostic test that will save so many lives!

Pity Party

Many times over the years, I’ve written a blog about how hard this is, and I’ve been clear that I wasn’t looking for pity or to make you feel bad for me. It’s really been more about providing general updates, and hoping to help educate some. But honestly, yeah, sometimes, it’s just good to commiserate with you. Sometimes I just want to say it feels like more than I can handle. Today is one of those times. I know there are a lot of people who have it a lot worse than I do, so it feels ungrateful to just dump and complain. But today, I’m going to straight up dump and complain.

I’m so sick of things being hard. I almost named this blog “simplifying is so complicated”. Let me walk you through it. I had the most amazing surprise of my life when my wife and some friends threw me this awesome celebration at my 5 year anniversary. So many people from all parts of my life. So much love. My favorite Michelle Malone playing some tunes. It was everything. And then it feels like all hell broke loose…

That week, we also closed on both houses and moved (out of a house of 18 years into a smaller house close-by all in one day). I wouldn’t say either closing was particularly smooth or painless, but we were super excited about this new house – it was all about simplifying, downsizing, making life easier for us. I SAID EASIER BY THE WAY. And listen, we decided to do this in March, and it was non-stop cleaning and organizing packing and some upgrades, followed by what felt like twohundredtwelve showings (so you know, look like you don’t live there AT ALL, pack up the dog and leave). Oh yeah, and still in treatment and working during all this. So it’s been a LOT.

Closing week, I also had labs and treatment. At that point, my CA125 doubled. That’s the warning sign – not just movement, but a doubled number. OK, it’s been stressful. And I have out of control arthritis which is inflammation. CA125 is so notoriously unreliable – and it does measure inflammation. But it’s also been pretty accurate for me. So there’s some additional stress on top of stress.

Just short of two weeks into the new house and we moved our son into his new apartment in Athens for his transfer to UGA (GO DAWGS), and we FINALLY had our master bathroom remodel completed (because we decided to do that during move in). So we thought, ok, here it is, we’re not finished unpacking, but we can have some peace – no workers, just us to finish settling in in our own way. And then, like 5 minutes later, we had a toilet that overflowed and learned we have a main line blockage under the slab. And tonight that story got even worse. Not only is that bathroom torn up, but the problem actually exists between the hall bathroom and the master bathroom. So yeah, they have to tear that one up too. The one we just finished. If feels like we’re never going to get settled in. It was bad enough to hear the jackhammer digging up one bathroom. Now we’ll have both bathrooms unavailable to us for some period of time. First fix the problem, then drywall, tile, paint, and all the carpet will have to be replaced too. Thankfully insurance will pay for a lot of this because it was a plumbing problem that caused the water damage.

In the end, this is about logistics more than anything. And finding peace in the chaos. Because wow chaos. ALL the chaos. Workers in the house all day, noise, dust, gravel, noise, and just stress. It’s hard to find the peace here. And I think that is so important. Stress is bad for cancer growth, so how do you keep from being stressed in all this? And how do you stop feeling stressed ABOUT the stress?

This week we’ll know more about how long this will last and what it will look like. I also have my last appointment with Dr B tomorrow which is super sad for me, and still a little scary. And I’m seeing a rheumatologist and hope to get some help for my pain. Then I’ll also have labs and treatment again. I hope that number comes back down. I am affirming that it will come down and that this isn’t a recurrence. And I’m scared anyway.

My inclination here is to apologize for complaining. I mean, I am alive and thriving and able to make a move like this after 5 years of hard treatment. And that’s all true and wonderful. But I’m not going to apologize or feel bad about saying it feels like I’ve hit the wall. I’m just going to feel sorry for myself right now. I need it to get easier. We are both pretty over this hard route for everything. I mean wow. Anyway, we’re kind of a mess over here. And we could both use all your love and light this week – for all of this, the health scare, and all the things that affect that. And our mental health could use some support too.  It’s just a lot.