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.

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Not quite yet

Well the short story is my CA125 went up. It didn’t double but it came close. I went from 53 after surgery which is normal, then it dropped to 38 so I was expecting something 20 or less. Instead it jumped back up to 57. Dr B isn’t terribly concerned – he thinks this is still inflammation from surgery. And he hates the CA125 because it’s so unreliable. But he still wants a scan and so do I. So that happens tomorrow at noon. I’ve still got this place in my belly that is really bothering me. And I’m trying not to be in a state of panic. So all your mojo is welcomed through this bump in the road.

Last week I finished my annual reading of the blog and I was telling Dara about some things that struck me. The biggest was how often I had a big high followed by additional information or something that felt like a gut punch… not one but 2 NOPE surgeries, NED-but-not-really moments, stopping chemo but actually not, expecting some end date only to have the goalpost moved… over and over and over. I suppose some of that is because I always always go in with a positive outlook and positive expectations. I want to still be that way but it’s hard some days. It’s hard when so many times I’m disappointed with some setback.

I also found there were a lot of “well at least it’s not cancer” moments. Trust me I hope this is one of those. But I’m also tired of those. I can’t seem to string together multiple days of not having to worry about cancer. I understand that I will always have something in the back of my mind about it, at least for a while, but I mean REAL worry. Honestly, I’m having a few down days about it all. I really thought I was done, for a while anyway. Hopefully tomorrow I can believe that again. Hopefully, I can reset the “days worrying less about cancer” counter to 0 and start AGAIN.

Thanks for your love and support.

FOUR

Today marks the 4th anniversary of my diagnosis. Happy Cancerversary to me! I guess I’ll continue to measure time by that date but I’m curious when and how you switch to X years cancer-free. Or x years as a survivor. I’ll have to think on that, but right now I’m going to call this my 4 year survivor date.

I feel great. I really do. I still have some lingering fear and some fatigue but overall I feel like I’m getting back to Ann. And other people notice that too. Every year I read the entire blog – just to remind myself of what I’ve been through and reflect some. I always find things I’ve forgotten and I always close it out feeling so very blessed. Lots and lots of funny and happy moments with laughter and love and so so much support. And yes some very scary moments and a lot of tears along the way.

Five years is the big mark so they say. The stats get much better at 5. But you know how I feel about stats. I will celebrate every year. And this one feels so special because I really believe I’m cancer-free. I know ovarian cancer can come back (and often does) but I’m pretty sure that ass has been kicked fairly hard and might consider not stopping here again. That’s my plan anyway. Big CA125 coming this week. I need it back under 20. 10 would be nice.

Thank you for loving me up all the time.

It’s All Good

I can’t believe it’s been almost 2 months since I published a blog post. Trust me, that is good news. I mean, I ALWAYS have something to say, but I just don’t have any big updates or major appointments pending. I am healing well from surgery and finally have my strength back. Both my surgeon and my oncologist are pleased with where I am, and my numbers are recovering from the trauma at the hospital. My 4 year anniversary is this weekend, so of course, that is on my mind. Every year I go back and read the entire blog from the beginning (finally figured out how to load it so it’s at the start and not the most recent!). So I will save the philosophical musings for the anniversary post in a few days.

I’ve said it before, but I guess once you’ve had a late stage cancer diagnosis (or maybe with any stage), it’s hard not to panic when things aren’t right – the CA125 goes up a little, I have a weird pain anywhere in my body, but particularly in the abdominal or pelvic areas, or I even get a little panicky when the lymph nodes in my neck are swollen (even though it’s only when I have a cold of some sort). I do have one of those right now, and I’m sure it’s probably just some scar tissue or something from surgery or the fall I took after I got home (oh yeah that’s a long story that I will condense here – I took a flying dive off my deck onto the pavers – not a long drop, but I did catch some air, went to hospital, no concussion, nothing broken, surgeon confirmed nothing was screwed up from my surgery – in the end, just a lot of really awful bruising and soreness), but anyway, there is a lump in my pelvic area that is causing some pain so I definitely need to know what it is. Seeing Dr. B tomorrow – either he’ll order a scan or send me to the surgeon who I would assume will do an ultrasound. Or maybe one of them can just feel it and confirm it’s nothing. I’m sure it’s not cancer – that’s what everyone says and what I keep telling myself. But I’d rather someone with a medical degree tell me that.

So many of you still reach out to see how I’m doing and I can’t tell you how much I appreciate that. You are such an important part of my healing. Hug your people – it’s super important.

Patience – Not My Strongest Suit

As of tomorrow, I will have been home from the hospital for 2 weeks. And here’s what I know. I suck at convalescing. I have zero patience. Yes, I am fully aware that this takes time. And I get that this will take even more time than “normal”. I mean, the surgery alone was pretty intense and I am sore and weak. Add to that the little lung issue and my special time in ICU, and of course, this is a body that was already weakened by almost 4 years of non-stop treatment. So yeah, I know, it’s just going to take some time. That doesn’t make me good at it. It’s been hard. The first day home, I had to physically grab the banister with both hands and pull myself up the stairs one step at a time. I’ve never been this weak in my life. The second day we were home, Dara got a stomach virus that lasted a few days, then I got it with a vengeance. That felt good on my tender belly. And for me, it sort of lasted the better part of a week. I’m still struggling a bit with food but I’m getting there. And I still seem to be running a low grade fever some and feeling yucky more than I want. I’m seeing my PCP again tomorrow to see what they recommend now (if anything). We’ll see. Oh, and yesterday I walked up the full flight of stairs without stopping, so I AM making progress. It’s just so ssslllloooowwwww.

I’ll tell ya, I’ve also had some pretty emotional moments over the last couple of weeks. Reflecting back on what happened, the scary aspects, the outpouring of love, the quick turn from good to bad back to good, etc. It’s just been a lot to think through. I didn’t expect to still feel so emotional about all of it, but I guess that makes sense given what happened.

I’ve seen all my docs (PCP, Oncologist, Surgeon) and they are all very pleased – lungs sound good, incision healing well and I start on my new cancer prevention pills next week (see how I changed it from “maintenance”?). I think part of my issue with how long this is taking is that I’m finally cancer free and I’m just so anxious for this new beginning. I want to RUN. But instead I’m just past crawling stage. I know that I have the rest of my life to run and I AM getting better. I just have to keep reminding myself that while I like to think I’m Wonder Woman, this is just going to take a few minutes (likely months) to fully recover. Sometimes I just have to remember how much better I am than I was 2 weeks ago, or even a week ago.

Lots of you have asked how I’m doing so that’s really the gist of it – I am getting better, and I am frustrated. And I am still amazed at how blessed I am to have you all out there sending love and support all the time. Thank you. Again. And again.

A Flare for the Dramatic

By now most of you know at least some of what has happened in the last 2 weeks. Here’s the full story…

On Monday, May 7th I was scheduled for pretty routine hernia repair surgery. The hernia was huge and I’d had it for about 6 months. I couldn’t have been more excited about this “last step” – fix the hernia and confirm again that I was cancer free.

Surgery went great. I did have a spot that was biopsied and turned out to be cancerous but according to my oncologist, it was a blown up cancer cell that wouldn’t show on a scan and is nothing to worry about. I should have been headed home by Wednesday at the latest – I hadn’t even arranged to be out of work because it was just a couple of days. But by Wednesday I had a fever and trouble breathing. They suspected pneumonia. And from Thursday to Saturday things went from bad to worse. A lot worse.

By Saturday night I couldn’t breathe at all and it was scary for all of us. Sunday morning I ended up in ICU intubated with a feeding tube and mostly out of it. Sunday and Monday are lost for me – they had me pretty heavily sedated which was a good thing. And then Tuesday I bounced back almost as quickly as I had nosedived.

I saw the infectious disease doctor that night and he said I did not have pneumonia because it doesn’t turn around that quickly. My chest X-ray from Monday to Tuesday was like “night and day”. Almost like a different set of lungs. My blood work and cultures indicated no disease and so he diagnosed me with a “surgical flare”. Yeah it’s a real thing. Apparently with any surgery, for any organs that are already compromised in some way, inflammation can become an issue. And my lungs aren’t great. I didn’t help that with smoking over the years but then I also had cancer and pneumonia impacts over the last 4 years. I also had been throwing up some post surgery so it’s possible there was an “aspiration event” in the mix as well. But between the steroids and antibiotics, the inflammation went away. And if it had been pneumonia, I would still be in the hospital and have a much longer road to recovery ahead of me.

Instead, Wednesday morning I was extubated and the feeding tube was removed. On Thursday I was moved back to a regular room (our 6th room in 11 days) and on Friday I was home.

I’ve had lots to process with this. It was scary. I really thought I was going to die. After all I’ve had the last 4 years, it’s pretty frustrating to have yet one more massive hurdle. I mean really what the actual hell? Who has a surgical flare?? I’m having a really hard time with the “why me” thing right now. Yes I’m stronger than I thought. But no I really don’t need more opportunities to “rise up” here. Pretty sure I’m due a giant break now. So let’s go.

I can’t say enough good stuff about Northside Hospital. And particularly the nurses – I always felt like I was the most important patient they had. Always. And I was once again reminded of how amazing our support network is. I mean I know that but when you hear nurses say they’ve never seen anything like it, it’s very humbling. You showed up in every way possible. You came so I could see your face and you gave me hope when I was terrified. You kept my wife grounded and fed and cared for. You took over for her when she couldn’t do it anymore. You called, texted, sent messages, and meals and followed along on Facebook. You never ever let us forget you were pulling for me. And you sent more hugs and prayers and love than I knew was possible. And I don’t really care what that doctor believes happened, it’s clear to me you loved the hell out of whatever it was and it ran away quickly.

I’m sorry to have stressed everyone out so much, particularly my wife. My promises of “this is REALLY it” seem a little shallow at the moment but I do believe this is it. I have a follow up with my surgeon in a couple of weeks and start on my new cancer maintenance med (which is a terrible name for it because I do not plan to maintain cancer so let’s just call it my stay clean plan instead).

So for now I am going to slowly get back my strength and love life even more than I did before if that’s possible. I am working my way through all of your messages and will never be able to respond to you all but know that I’m reading them all and that I am so very touched by your love and support. In the coming weeks I hope to celebrate life with many of you. Until then know that my heart is full and I love you all.

Surgery tomorrow

These 2 weeks have flown by and surgery is here!! I will try to post an update sometime tomorrow or Tuesday but in the meantime would really appreciate your thoughts, prayers and good mojo at 9am tomorrow (well it’s today now actually). Surgery should be about 2 hours and then I won’t have this hernia anymore. YAY!!!!! Sooo. Ready.

Thank you for your support!