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.

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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. 

 

Five Years Ago

Five years ago today, I heard the words, you have primary peritoneal cancer. I didn’t even know what a peritoneum was. It’s really treated exactly the same as ovarian cancer and responds the same to drugs for the most part. So it’s coded as ovarian cancer.

Five years ago, I didn’t know I would live to see this day. And while most of the days in between my resolve was strong, I surely had days where I struggled to believe I could hit this mark. The odds were definitely stacked against me.

Five years ago, I didn’t know how strong I could be.

Five years ago, I didn’t know I had lucked out and landed such an amazing medical team.

Five years ago, I really had no idea what a special, powerful, amazing, strong, and large support network I would have, both friends and family.

Five years ago, I thought I knew that I had married well. But I had no idea just how amazing this woman is.

Five years ago, I would never, ever have imagined what it feels like to be loved this much. My wife and some friends threw a 5 year Cancerversary party for me last night – it was a huge surprise and completely overwhelming. I hope that I can send all that love back out into the universe too. It’s some powerful mojo and definitely a key part of my thrivery. Yes, thrivery. I made it up.

Five years ago, I couldn’t have imagined that I would still be in treatment, and just last week received some great news about that. The doc thinks I still have a little cancer left in there, but he feels good enough about where I am to pull me off the harsh chemo drugs right now – give my body a break. I’ll still take Avastin infusions every 3 weeks, but the side effects are pretty minimal.

Five years ago, I wouldn’t have imagined we would have just moved our son home from school in Florida so he can finish up at UGA (YASSSS GO DAWGS!), and that we would be moving THIS WEEK into our “next phase” home. Going from 3 floors, 6 beds, 4 baths, and a pool to 1 floor, 4 beds, 2.5 baths, and a pool. We’re staying close by, super excited about the move, and also emotional and very very tired. We’ve been in this house 18 years, almost to the day. It’s a lot.

Five years ago, I had no idea I would be writing a blog and sharing my story so broadly. And that complete strangers would reach out to me because of it. I sometimes meet people in places that recognize me from this blog. Thank you for that additional outpouring of love and support. You are all part of my healing process.

Here’s to the next five my friends. Keep moving forward. Onward and upward. Thrive On.

Scantastic News!

My scan got moved to today because of insurance approval delays. Scan at 8:30 this morning and I just heard from my doctor. STABLE!!! I am thrilled and he is too. I would love a clean scan but my last scan in April showed very little cancer, and that hasn’t changed. He’s still waiting for the detailed report, but super happy with my news and wanted to share. Honestly not sure I’ve been this stable with this little cancer for this long. Clearly something to celebrate!!

He’s going to give some thought to next steps, but I assume I will stay on both the Avastin and Abraxane for this next month. Hopefully at that point he’ll take me off Abraxane.

It’s been 2 months since I lost my friend Beth to this disease and I miss her everyday. I know that my Team FOC angels are pulling for me and that’s some pretty powerful mojo in my corner. But it’s not the same without her.

In other news, we finally have some movement on the house as well. Entertaining one offer with several other people interested.

I feel this shift and am so grateful for it and for all of you! Ann

Finding Peace in Turmoil

I don’t even know where to start with this update because, as usual, there’s a lot. As a brief summary – my number has creeped up a little over the last few months, my amazing miracle-working doctor is officially retiring, the house has been on the market far longer than we expected, and I feel pretty good overall, not great, but good. SEE? THAT IS A LOT.

CA125 is a horrible marker. It just is. Dr. Benigno has said that from day one. Ovarian cancer patients are super attached to it because really it’s all we have other than scans. But it is wildly unreliable and varies greatly from person to person. They really don’t get concerned about it unless it doubles – and mine has really not moved much since the very beginning when it was 1386. I think it’s been up near 50 before but that was right after surgery at some point. It can react to basic inflammation so sometimes it can jump for weird non-cancer related reasons. For the non-cancer people, anything under 35 is considered good. For those of us with a history of OVCA, it’s about the amount of movement more than the number. Anyway, mine usually lives in the 8-12 range, and it’s just been creeping up a little at a time, and now I’m at 23.

Speaking of Dr. B, yes, the time has come and he’s finally retiring. OK, he’s not really retiring, he is just not going to see patients anymore. He’ll being heading up some research for Northside, and continuing to focus on the work at his Institute (OCI) – they are so so close to releasing an early detection blood test that will save thousands of lives. He will continue to travel and lecture as well. But he won’t be my primary doctor. I have shed many tears over that these last couple of weeks. I believe I am alive today because he has pushed hard for treatment plans that were outside the standard protocols, because he thinks outside of the box, and because he has so many years of experience. Who will fight those battles for me now? It’s been pretty hard not to be terrified of what this means for me long-term. But as Dara reminded me, it’s not JUST Dr B, it’s all of my team – the nurses, the infusion center, my support network, and ME. And while that’s true, y’all this man is a genius. So I’ve struggled with next steps. I have seen a prominent doctor in the OVCA practice at Emory, and I really like her. She is quite plugged in to the current research and trials. And I’m in touch with her – she has my records and is up to date on my plan. Am I supposed to leave Northside, this practice where I’ve been for the entire almost 5 years? Or do I stay with Northside and change to one of the other doctors in the practice? I finally met with Dr. B today to discuss it – and learned more. I was frequently seeing his NP when I was there and I really really like her. I would be assigned to another doctor, and for the most part, see Sherry for my regular appointments. So for now, my next step is to schedule consultation appointments with the 2 doctors I like in his practice today. I trust those appointments will lead me to the right decision. Yes, the doctor is most important, but I just can’t take all the other pieces out of the decision entirely. So, more data, then decision – I’m still open to a move to Emory if that’s what needs to happen. Super tough decision all around.

So back to the CA125, Dr. B wants me to have a scan this week – not because he’s really concerned about the number (he said “your CA125 looks good, it’s 23”) but because he wants to consider next steps for me. If it looks as good or better than the good April scan, then he wants to take me off the Abraxane and just move to maintenance with Avastin only. WOW. That is super good news and not what I was expecting to hear today. I think this is part of his prep for leaving – go ahead and get to the “next decision point” for me. So hopefully I get a scan set up in the next few days, and it is amazing. I’m terrified of course. I say that every time, but the recurrence last year was so serious and April was so good – I just need this to be a continuation of the good instead of another step back. So please send me those awesome clean scan vibes starting now and continuing until you hear from me again. LOL.

In other news, we’ve had our house on the market for 47 days (but who’s counting) and it has been quite stressful. We’ve had 25ish showings and some interest but no offers. We put a lot of work into the house getting ready with some updates, paint, packing, etc. – A LOT, and it looks amazing. Yes, it does need some additional updates, but we have a backyard that is hard to beat, IF you want a pool that is. I find it ridiculous how you have to basically make it look like no one lives there when a showing is scheduled, but it’s just the reality of today’s market. So we pack up the dog stuff, turn on all the lights in our 3 story home, put away personal things (we packed up all of our pictures for example), clear off all the surfaces in every room (mostly stays that way now), grab the geriatric big dog and leave the house for however long it takes. It’s A LOT. And the house just doesn’t feel as much like our home anymore. We’re also sort of house bound during the days because we have to be ready to show within a 30 minute window – so we just can’t wander too far during potential showing hours. So we’re making some price adjustments and trying to trust that when the house we’re supposed to move in to is ready for us, ours will sell. And hope that is sometime soon. We’re just downsizing and trying to stay pretty close to the area we’re in today so it’s not like we have an urgent need to move it. We just really need to simplify our lives and reduce our bills.

Trying to keep calm and trust this is all unfolding as it should. Just like I’m doing for the doctor decision, and the scan. I feel pretty good these days although I am really having a lot of joint pain, which is pretty common for long-time chemo patients. Trying to get in to see someone for some drugs and get back in with my chiropractor for some relief. But clearly the head game is the biggest thing for me right now – finding peace in turmoil. It ain’t easy. But it’s super important. I just love the quote from Wayne Dyer – “Peace is the result of retraining your mind to process life as it is, rather than as you think it should be.” Yes. All that.