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.

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How Much Longer?

I get asked this question a lot – how long will I be on this treatment? I used to be really attached to that answer. If you’ve been with me through these 4 years of treatment, you know how many times I was disappointed to learn that my assumption about, or even what I had first been told about the number of treatments was wrong, or was later changed. So I’ve worked really hard to let go of expectations. It’s not easy. As cancer patients, we all want to know THE PLAN. As I’ve discussed before, it’s just not that clear. I think it is more clear with some cancers – they just know more about how to stop it and they are much better at preventing recurrences. But we’re just not there with ovarian cancer yet.

So, when I first started this treatment, Dr. B said 6 months. And because sometimes I do actually learn something, I decided not to be married to that. Sure enough, when I saw him last week, he confirmed that he is still working on getting the Avastin approved, and that he is confident it WILL be approved. He’s very pleased with how far my CA125 came down after the first cycle with just the Abraxane. And then he said the words that used to crush me emotionally – “you know, there is no limit to how long people can be on these drugs – you can be on them a year or more”, and I didn’t freak out. I didn’t really even pause. I mean, I have certainly given thought to being bald for a full year or more. And honestly after a year, I’m not sure I’ll want to have hair again because y’all, this is the easiest side effect for me. You have no idea how much time we spend on hair until you have none.

Anyway, here’s the answer to your question – I will be on this drug until Dr B (and I) decide I shouldn’t be anymore – I suspect if it continues to work, it could easily be a year. I don’t love that. It sucks to have weekly treatments for those 3 weeks, and to feel crappy a LOT, but it’s awesome to be alive, so… I can and will handle it. And, the super good news is that he followed that statement with some of his thoughts on what is next for me, what is the maintenance that will work for me (Lynparza worked well previously), what new drugs are on the horizon to keep this beast at bay. He is thinking about my maintenance plan. He believes I will get back to maintenance with this treatment. That is great to hear from him. And it gives me some peace on the days when I forget to stop being afraid of what’s next, when I forget to stop being afraid of the future, when I need to remember to live in today. So live in today my friends. It’s all we really know.

This one’s not about death…

Well as I’ve been gently reminded, I’ve left that “death blog” out there hanging for far too long. So without rehashing all the discussions and thoughts since that time, let me say just this… I know it wasn’t easy to read, maybe more so for some than others, and I also really appreciate the very direct conversations we’ve both had with many of you as we process this together. It means a lot to walk this path with so much support and love. Particularly when it’s hard. And it’s been hard.

As many of you suggested, and as I suspected, the lead up to, and finally the writing of those thoughts has left both of us in a much better place. We had to move through that and now it’s mostly back to the new regular – labs, chemo, dr appts, pain, fatigue, work, love, laughter, music and family and friends. And yes, fear. It’s not gone and I guess it won’t ever really be, but it’s not front of mind every day. I get mad. I have days of feeling sorry for myself because I’m so tired of this. All that comes up, I deal with it, I remind myself to keep moving forward, and I face another day because that’s what you do.

So let me give you an update on where I am. First, the awesome news… my CA125 came down from 57 to 31 after 1 month of treatment. It’s working! I had a fair amount of anxiety because I just wasn’t sure this time. So it was a big sigh of relief for sure. Now the not so good news, I still don’t have the Avastin. The appeal is underway but takes time. And getting the drug directly from the pharma company also takes time. It’s super frustrating but I’m glad to know this is working while we continue to push for the Avastin.

I’ve just started the second month and am learning the meds I need to take to offset side effects so I can function. Mostly it’s stomach pain – sometimes pretty intense. But I’m managing and as Dara likes to remind me, it just hurts when cancer dies. Ok. So be it. I can take it.

This month brings a visit home from our college sophomore son (the longest he’s been gone yet), a week in Hilton Head, lots of music, Pride weekend in Atlanta, a few gigs for our chorus, and of course some football (which means a lot of screaming at the TV – one can hope with glee). I’m looking forward to it. A day at a time.

Musings on Death

Some of you likely read that title and decided “nah, not this one” and some of you jumped right in. I will warn you, this will not be a short blog because once again, I have a lot to say.

We’ve had a lot of death around us lately. Of course, we’ve had the hard conversations since this recurrence diagnosis, but right away we also had very public deaths and funerals of Aretha Franklin and John McCain. And today we went to the funeral of a dear friend’s mother-in-law. So, it’s been part of my world and my thoughts of late. And then this weekend, my family went with my mother to a little mountain vacation to celebrate her 86th birthday. I didn’t sleep well and didn’t feel so good, so as usual when that happens, I had a lot of “head time”, some of it in the darker “fear places”. But I walked away with a profound sense of peace because I just reached a level of awareness that hadn’t been there before for me. Before I share that with you, let me be clear. I am still hyper focused on the positive and seeing this recurrence as a mere bump in the road. But I believe this is an important next step for me in this experience and because of that, I wanted to share it with you.

I am not afraid to die. I don’t expect a lot of pain. And if I die from cancer, it’s not like it sneaks up on you. I believe I will have plenty of time to have a peaceful closure with my loved ones and to leave nothing unsaid or unforgiven. I am clear that whenever it happens, I want to have an unburdened transition. Honestly I strive to live that way anyway. I mean I could walk out of my house and get hit by a bus so I want my people to know I love them, and to let go of any resentment or conflict in my heart.

So no, I’m really not afraid to die. Then why all the fear and stress about this recurrence? I have some clarity on that now and thought it was worth sharing. I believe it comes down to two areas of focus – THIS is what keeps me awake at night.

Letting go of the things I won’t get to experience… growing old with my wife, watching our boys grow up and really take charge of their lives, having grandchildren, those trips we really want to take to Ireland and the Greek Islands and ALL those other places, really getting to retire and enjoy that phase of life without worrying about finances, those pieces I won’t sing, the music I won’t hear, those books I won’t read, the beaches I won’t see again, that next career turn I won’t make, the blog I didn’t get to write, the thoughts I didn’t get to share, the motivational speaker I never became… and on the lighter side, and this is particularly for those of you that know me well… the wine I won’t taste, the game I won’t get to win, the football team I won’t EVER see get to the top, the political debate I can’t have…

Knowing that “my people” will be ok… my family will have “enough” money (I’m the breadwinner), my wife can grieve and still live a beautiful and happy life AA (After Ann), my son and Dara’s son will both grieve and recover, my son will launch his adult life and continue to be the sweet, loving, compassionate man he is becoming, our kids will remember the things about me that helped to shape their lives… In some ways, it might seem pretty arrogant to think people can’t make it without you, and it’s not really that. It’s more of a sense of guilt about what you are leaving behind – the people who depend on you financially and emotionally, will they be ok?

This one is hard y’all, and it’s exactly what Dara and I have been working through over the last month or so in particular. I am blessed that she knows where I am and doesn’t hesitate to remind me that she’s got this. She will be okay. That’s so important. So, tell your people you love them and tell them you’ve got this.

Finding peace in those areas really is the key. I’m almost there. It’s a huge shift.

I’m not afraid to die. But I don’t like letting go of this picture in my head. And listen, that is EXACTLY what happens with cancer. We are letting go of expectations and the picture of what our lives were “supposed to be” or what we wanted them to be from the very moment we hear the words “You Have Cancer”. And we continue to do that with every change in our plan or the bumps in the road after that. Letting go of expectations. Letting go of what we thought it would be. Letting go of fear. And trusting that you are right where you’re supposed to be. Knowing that you loved well, you make a difference in people’s lives, you raised a child and helped raised another that will continue to make an impact in the world. So it’s not so much about what you didn’t get to do and all about what you did do. What am I doing with the life I have TODAY? How am I showing up in my family, my community and my world? THAT IS WHAT MATTERS. That’s the end game.

It’s not about what you didn’t do, it’s about what you did, how you loved, how you showed up every day. There’s an amazing amount of peace in that realization.

The Not-So-New Normal

I was talking to my mom the other day and she asked how I was feeling. My reply “well, my stomach hurts with weird shooting pains, I think I’m constipated, and my hair has started to fall out.” And her response was something like this “so it’s just another day for you huh?”. Yep. Almost 2 weeks in to treatment, and I’m in the place we ALL are at this point. Trying to figure out what the side effects will be and how to best manage them so we can function in the real world, you know, where we have to work and do things. I’ve had some pretty intense stomach and intestinal pain. I have no idea if some of it is still surgery healing, and some combination of chemo side effects and cancer. Whenever I’m hurting, Dara likes to remind me that it hurts when cancer dies. So that’s where I try to keep the focus while I work with various drugs and remedies for the side effects.

It is interesting though, for me anyway, I usually adjust to chemo fairly well, and it becomes something I know how to manage, and I guess I just get used to it – feeling tired and meh really almost all the time. But after being off since April, I forgot how much chemo sucks. It just does. I don’t care what drug you’re on, it all sucks. Some are easier than others, and this one is, in general (if you don’t care about the hair loss that much), but I forgot about weird aches and pains and figuring out what works to help, and knowing that some of it is just “riding it out” those first few days, and I can already feel some fatigue settling in too. It’s all normal. And I’m managing to mostly do life like I want, so I really can’t complain too much.

I still don’t have the Avastin approved and Dr. B wants this as part of my treatment. I think it’s important as I’ve responded well to it before. I saw him today and he’s pretty angry about it all. He said this has been happening more and more over the last 4-5 months all over the country, and that when he’s in these “peer reviews”, he feels like he’s talking to someone reading from a script saying this isn’t within the NCCN guidelines. It’s infuriating – really on 2 levels. First, my doctor should be able to decide what treatment I should receive. He is the expert here. And second, I’m super irritated that he has to spend so much of his very valuable time doing this. He said it’s a ridiculous amount of time. This man who has a very full plate of patients along with his OCI work – working on better targeted treatments, and a screening test. THAT is where his time should go. Not to fighting with insurance doctors over the best treatment path for a patient. I mean WHAT?? He’s still pursuing this down 2 paths: filing an appeal with the insurance company (after these bogus peer reviews and waiting for the official denial letter to arrive), and thankfully he has direct relationships with many of the top pharmaceutical companies, so he’s still working that angle as well.

This treatment is 3 weeks on, 1 week off. The Avastin will be every other week. So in order to actually give me that 4th week off, the Avastin needs to be on weeks 1 and 3. This is week 3, so it looks like I won’t have it this cycle at all unless something breaks free in the next day. We’ll see. In the meantime, I’ll keep working at kicking cancer’s ass and beating back side effects.

As for the head game, well that’s been harder, but I do feel better. When we did a little beach trip during the first week of treatment, we had some very hard conversations about the “what ifs”. I mean we should all know our life partner’s wishes just because anything can happen to anyone, but when you’re staring down the barrel at this disease, those conversations are important and difficult. We talked about everything from funeral wishes and spreading ashes to making sure my grandchildren know me. Hard hard stuff. We had been working up to those discussions since I got this news a month ago, and it seemed clear we needed to talk it out over drinks in a pool at the beach (we could have picked a worse setting for sure). That stayed with us both for the week or so, but we’re both in a much better place now. I won’t say I’m not still scared, but I am feeling strong and determined and focusing on one day at a time. That’s where I need to be.

Finally, this has been a very interesting time with my closest support network and it’s caused me to think again about how hard all of this has been on them too. And how I’m a pretty exhausting friend to have. I get it y’all. You don’t know when to check in and say “oh stop, you’re going to be fine because I just know that”, and when to give me some space to work out of the fear and grief myself. It’s hard to be a care-giver, both for my wife who continues to be an amazing example of how to love someone through this, and also for the rest of my family and close friends. And just when you think I’m to the place where this is over for some period of time, here I am again, needing your support, needing to hear from you, needing that boost you give. And I get why people talk about the friends that disappear with a cancer diagnosis – it hasn’t happened to me, but I know story after story where it has. So I just want you to know that I get it – I am aware I AM A LOT. And as for walking that line between calling to offer support and encouragement and giving me “a minute” to work it out, let me be clear, and I really do think most people feel this way… It is ALWAYS APPROPRIATE to call and tell me you saw dragonflies today and it made you think of me and how I’m just fine (thank you to Allie, and Eric specifically although many of you post them on my Facebook page and tell me of your encounters), or to offer some other words of encouragement. Even if I (or some other survivor in your life) am not in the place to fully accept it in that moment, it still helps, and it’s important. Some days it’s just easier to pull your head out of the dark place when someone pops a little light in with a quick message.

Thank you for reminding me to focus on a day at a time. Thank you for reminding me that it’s all good. Thank you for standing by me even when I’m exhausting and needy. I mostly try not to be, but this ride is a bitch y’all. It can make even the best of us super hard to love for a lot of reasons. It’s been a long 4 years for sure. And you’ve been consistent with your love and support. I can’t tell you how much I appreciate that. You really do make it so much easier to walk this path. So thank you, from the bottom of my heart.

It Just Plain Sucks

Well a lot has happened since that bump in the road. I’ve been in insurance hell for most of that time. Dr. Benigno was very clear about what he feels is right for me. Abraxane (new for me) and Avastin (not new for me). Insurance denied the pre-authorization. Then there was a peer review with Dr. Benigno’s PA. That was denied. Then there was a peer review with Dr. Benigno for an hour. That was denied. Then there was another peer review with Dr. Benigno for an hour and that was also denied. You can imagine how frustrated and upset and really really angry I am by this point. I can’t even tell you how mad and scared I have been. I mean I know cancer is there and growing and I can’t get treatment because of insurance? What the hell y’all?

Everyone wants to understand why. This is the best way I know to explain it – there are guidelines for treatment protocols based on progression of disease, genetic markers, etc etc. And Dr B, well he is AHEAD of the research, not behind it. If I wanted to follow the guidelines in place for ovarian cancer, I think my chances of survival would be lower. He has been doing this a very long time and I trust him completely. And in the end, it really comes down to money. Insurance just doesn’t like paying for chemo.

Anyway, after the 3rd denial, doc decided to go down 2 paths… first, appeal the decision. However, that can take a minute and he really didn’t want to lose more time. The Avastin is really the problem, so he put through for the Abraxane alone. And it was approved within 24 hours. He is working directly with the pharmaceutical company to see how he might get the Avastin in case the appeal fails.

And then my nurses made magic happen. We had a little beach trip planned this week – and the delays really made it seem that we would have to cancel it or cut it very short. The infusion center first said they couldn’t get me in THIS WEEK. Nope. I won’t wait another week. I was prepared to cancel this trip. But then one call to Peggy and she got me in for stat labs and found an opening for me to have my infusion the same day at a different center. And then we left for the beach. I appreciate her and Dr. B and all the people that make this crap so much easier.

I had really mixed emotions today. I’m super glad to be back in treatment. But WHAT? Exactly. Yes, finally approved (and the Avastin is in process so hopefully soon!) and yay headed to the beach for a few days. But so depressing to be in full treatment again. I won’t lie – these past 2 weeks have been the hardest since the very beginning. This recurrence is scary and there’s just been other stuff going on too. I’ve cried more than I have in my whole life. I’m scared and so sad. I finally asked for some Xanax to help with my anxiety, facing all of this AND fighting with insurance. It’s been tough.

Somehow I managed to find some purpose in all of this before. I felt like this blog was helping some people – or so they’ve said. And all of that made me feel like at least some good was coming out of all this. But what’s the purpose now? I mean we were just getting to the point where we could re-launch the business and ramp things up. I feel great. I’m so much healthier than I have been in many years. I’m losing weight and eating right and moving more. This is just such a gut punch. Some days I haven’t felt like I could find my way to the surface again. I’m hoping starting treatment and this little getaway can help me reset my psyche and boost my spirits. Because I’m super clear that I can’t heal physically unless I can also heal mentally and spiritually.

Thank you for all of your love and support. I know you’ll be looking forward to my updates on things like nausea, diarrhea, baldness, and learning to apply false eyelashes again… 😜

It’s more than a bump in the road

It’s not good news. The scan showed a number of new small spots and a larger tumor. Actually when I read the scan report, I asked the doctor if it was time to start on the bucket list. He said no. He actually laughed and said he had seen much worse and that I am not high on his list of major worries. But let’s be clear, this is serious and I’m pretty scared. This is the worst I’ve been since day 1 (although not as bad as then) and I’m just about that scared.

Yes I’m strong. Yes I can do this. I know all those things on some level. But Beth just said these words to me and I know she is right. “But let the sad roll over you. And feel the scare. So when it passes it can be done.” So that’s where I’ll be for a minute. Thank you for your continuing love and support.