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.

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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!

Great News – CLEAN SCAN

My scan results were perfect. I am thrilled and so is he. Getting onto maintenance drug this week after lab work.

Thanks everyone. I could feel your love and support today.

Scanxiety, Again

Unless I missed one, I’ve had 10 scans since I was diagnosed. And every single one of them produced a fair amount of anxiety. Every time I go in feeling upbeat and positive and most of them have been somewhat disappointing – not much of any growth anywhere but not entirely clean. Although some, in fact, have been good. I thought I was NED in those moments. But I really think those lymph nodes had been there all along and he just wasn’t sure they were cancer (until they took them out in October).

I have a scan on Monday, and this is A VERY BIG DEAL. Ok they are all big deals but I am going in feeling so sure it’s all good. And everyone around me has that vibe. I mean, even Missy – her vibe has been accurate so far. And she’s sure. Dara’s sure. Beth’s sure. Mom’s sure. You get the point.

So clearly the “but what if it’s not?” question is very very scary. That would mean that I grew some cancer through this harsh chemo and would be pretty bad news. Of course I will deal with it but it’s terrifying y’all. Those “what if” questions are trying to take over this weekend but I won’t let them!

It’s a big week all around. Scan Monday at 9:30am and rather than calling for my results which is usually the plan, they want me to come in to the office Monday afternoon at 3pm. I hope that is because they want to celebrate with me. I’m going to try to wait until then. We’re so lucky – even that timing is a lot faster than most people get results. I will update the blog right after that appointment.

Assuming the scan is clean, then I will immediately start on a new maintenance drug called Rubraca. It is another PARP inhibitor and was released for BRCA negative people in early April. Again, so nice to be with a doctor who is that plugged in to the latest treatments. I expect this will be similar to the Lynparza I took last year – nausea and fatigue, and it can take several months to adjust. I also had to have transfusions every few months. So we shall see. It’s a whole lot easier than chemo!

Wednesday I meet with the surgeon to repair this hernia and I am so very ready to have that done. It is large and in charge of my body right now and I am so over it. I suspect that will be sometime in mid to late May or early June depending on his schedule.

And then I have a new lease on life. I can really get back to working and growing this business. I can work on regaining strength and get my body back in shape. And hopefully life just returns to something closer to normal.

Of course I welcome and appreciate all the positive mojo and thoughts and prayers and support always!! Stay tuned.

Today Is My Last Chemo

I’ve never been so excited to be sitting in the infusion center. It’s my last chemo treatment. I’ve said that before but it’s just different this time. Before, there were these spots on my lymph nodes that we knew could be cancer even though they weren’t growing. And now those nodes are gone. Six months ago they took out the rest of my cancer. So yeah, this time is different.

I feel good about it. Of course, I’ll still be on pins and needles until I hear Dr. B say that my scan on 4/23 is clean. And my head is playing tricks with me already. I have a place in my pelvic area that feels like a knot. I’m sure it’s some scar tissue from when I did those blood thinner shots after my surgery in October. But what if it isn’t? Yeah it’s going to be a long 2 weeks for sure.

It’s been 3 years and 8 months since I was diagnosed. Well it’s been 1351 days to be exact. And I’ve been in chemo for 2 full years, with another 8 months on another infusion drug that wasn’t chemotherapy. That leaves about a year “out of treatment” – basically the time before and after 3 surgeries and about 3 months to heal from Doxil (the one that burned me so badly). I also had a few months on a PARP inhibitor which is what I will be taking after chemo today. It’s a newer one that was just released for BRCA negative people this past Friday. Yes it pays off to have a doctor who is very well informed all the time.

I go back and forth in my brain about where I am today. At one time I really wanted to hear and to know that my cancer was gone, for good. And I still have that hope. But given my path so far, I have to also consider this could be more of a chronic disease for me. And I know I can handle that because look what I’ve handled ALREADY!! It still makes me excited to think this is a real break, like, for years. And in years, I fully expect cancer treatments to be significantly better and a cure to be a reality. So for today, I’m just content to be really excited to close the door on this particular chapter and to love this moment, and look forward to all the tomorrows. If I’ve learned anything through this, it’s that THIS MOMENT is what counts. We can’t get lost in worrying about the ones to come. Sooo YAY FOR TODAY, IT’S MY LAST CHEMO!!!

You all continue to uplift and inspire me with your support and love. Thank you for walking with me.

THE Plan

If you’ve been following this blog, or if you know me at all, you know I like a plan. I just function better when there’s a plan. That doesn’t mean I can’t let go and enjoy a vacation, but I’m still going to have some tentative plans worked out if we decide not to just chill. And when it comes to cancer, it’s real hard to have a plan, particularly with ovarian cancer. Unlike some cancers, standard protocols and treatment plans either don’t exist or often aren’t effective, depending on a host of factors including the specific cell type and progression of disease.

In any case, in my 3 years and 9 months of treatment, I’ve had quite a few instances where I thought I was walking into Dr. B’s office to hear about the “end game” or going on some type of maintenance drug only to come out super disappointed about either some questions with my scan or some extension to my treatment or even just some postponement of that “end”. Today I walked in feeling excited, but because of these past situations, also somewhat on guard. In my mind, I have 2 treatments left and wanted to hear about a scan and next steps, you know, hear about my plan.

And I got my plan. I am so excited. Last chemotherapy on 4/9. Scan to confirm my NED (No Evidence of Disease) status on 4/23. Appointment with my hernia surgeon on 4/30 to hopefully set a surgery date. It will be somewhere between mid-May and mid-June more than likely. Start new maintenance drug, Rubraca, on 4/30 (a drug that will be released as a maintenance drug for recurrent ovarian cancer on 4/6 – it pays to have a doctor in the loop.) I will have to stop taking it for 2 days for surgery.

It feels so real this time. Of course, this all depends on a clean scan. I’m pretty sure I know a couple of angels that will be looking over me that day, but as always, please continue to send all the prayers and healthy mojo my way. Thank you so much. I will keep you all posted!