MAINTENANCE

Maintenance: the process of preserving someone or something

It’s not really an exciting word, unless that “something” being preserved is your life. This week, for the first time since I was diagnosed, Dr. Benigno said I am now in maintenance mode. The surgeon got all of the remaining cancer, and now the treatment is all about keeping it from coming back. Some people stop treatment here, but ovarian cancer has such a high recurrence rate that Dr. B really likes to keep something going (if the side effects are manageable) for some period of time. So, for now, he is taking me off the Avastin (infusion drug) and keeping me on the Lynparza (pills). I am on a slightly different dose now since they finally released a higher dose tablet – so now I take 2 in the morning and 2 at night (as opposed to the 8 giant capsules twice a day). I hope these side effects are a little better since I’ve struggled with the anemia and nausea. We’ll see. 

I also saw Dr. Abdalla (surgeon) this week. He couldn’t have been happier with the surgery and with my progress. Tomorrow is 3 weeks and I really feel pretty good. I’m off all pain meds and moving well. It’s taking some time to get my energy back and get my whole GI system to stop freaking out but I’m getting there. 

Next steps: Monthly appointments with Dr. B and monthly infusion visits for CA 125 and port flushes. They do that to keep it working. Typically you keep the port for a year after the end of treatment. I’ll have a scan in a couple of months. Dr. A called this my “new you scan”. I love that. 

I’m super excited about all the “new me” things to come. Thank you for your continued support through all of this, and the calls, visits, cards, texts, and food to help us through this recovery time. Love y’all. 

Oh, and I’m still gonna write. I still got stuff to say. 

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Going Home Cancer-Free

I am doing really well post surgery. It’s a bigger incision than I had expected, maybe 10 inches down the middle of my belly with a nice detour around my belly button, and I feel worse than I thought I would. But I don’t care. It won’t last forever and the meds offset the worst of it. 

The best news is that Dr. B came by this morning and said the pathology report showed those lymph nodes did have tumors and he’s super glad they are out. There really aren’t margins to measure with nodes but the surgeon didn’t see anything else when he had me opened up, and the most recent scans have only shown these 2 spots, the ones that are now gone. So I asked Dr B if I could consider myself cancer free and he said please do. Yay!!!!

We will discuss next steps later. I know I will stay on the Lynparza pills and even though they can be harsh, the research shows strong results with these PARP inhibitors preventing recurrences so I’m good with that. And the higher dosage pills are finally available so I can go to 2 tablets a day instead of 16 capsules! He will also consider more Avastin but we will discuss that later. Follow-up scan in a few months. 

Annnnd I’m going home today. Everyone is pleased with where I am 3 days post surgery, so hopefully late today I’ll be in my own house to continue to heal. 

I am so relieved and excited and grateful and still in a bit of shock and completely lit up with joy. I am super clear all of your support and prayers continue to be an integral part of my healing process. Thank you again and again and again. 

Quick update

My surgery was yesterday about noon. It lasted for two hours. And the doctor is very pleased with the results. He was able to get both lymph nodes and clean out that entire section. He told Dara that she was going to have to put up with me for many years to come. That’s all great news. 

I feel much better than I expected to feel this soon after surgery. I’ve been sitting in a chair and already walked around the hospital floor with a couple more times coming this afternoon. I expect I will be here until Friday. Will keep you all updated. Thank you so so much for your love and support.

Change of Plans

If I had a nickel for every time I wrote a blog about a change in plans, I could retire. That would be nice!

Surgery is Monday now. Yes, like in 4 days. My surgeon had travel plans that changed so they moved me up, way up in fact. Yay! Please bubble us up good that day for a perfect and successful surgery – it’s scheduled for 12:30pm. 

Thank you! Gotta go re-arrange my schedule. Again. So exciting!!!

And then there’s the anger

Well friends, it’s been a very long 2 weeks of mostly inaction. Where did we leave off? Oh yeah, being in pre-op when surgery was canceled. The following Tuesday I saw my cardiologist who immediately cleared me for surgery because she saw no indications of a heart issue, backed up by a perfect EKG, which matched the one I had in March, an echo a couple of years ago, and a cath procedure (with no issues) less than 5 years ago. In fact, she said with the hemoglobin level at 7, if I walk up the stairs and my heart is pounding and I’m sort of breath and I DIDN’T stroke out, then I’ve had my stress test. From there we went right back to the surgeon’s office. I think he might have been a little surprised she cleared me, but they promised to get me rescheduled as soon as possible and that it was “a priority”. I should hope so after all of the emotional and physical lead-up only to have it cancelled.

So, finally it is rescheduled, as of last week. For October 6th. Yes, 5 weeks after the first date. I had to undo my 4 week “out of office”, reset my client’s expectations of my availability, re-book some appointments and cancel some others, and basically re-rearrange my life.

And mostly I had to reset my attitude. I have been very angry.  This surgery was first presented to me on July 26th. A surgery that, while complicated, would make me cancer free. A surgery that was initially scheduled within a week of the first appointment with the surgeon. So, being in limbo and wait mode for over 2.5 months is a lot. I’m doing my very best to keep my chin up and stay positive and be excited because this IS exciting, but y’all, so much of this delay seemed unnecessary and it has so tried my patience – not my strongest suit to begin with – the back and forth, the not knowing, the very long delays. I am trying every day to acknowledge that this is all in the right and perfect timing, even if I can’t see why. Listen, having cancer and the constant struggle to stay positive and keep moving forward is not easy. Add to it a pile of really unbelievable medical bills (yes even with insurance) and for us, the fact that we are still struggling to get a new business off the ground. THEN add things like this to the mix, and it will break even the most upbeat person.

The anger is tough, it’s hard to keep at bay, and it has a way of sneaking up on you, exploding and then shifting to depression and sadness. I am sure that I’ve hurt some feelings in 3 years, that my bad days have come out in ways that have hurt my family and friends, and I’ve had times where I knew I was being a royal bitch, so consider this a blanket apology for that. Really, it has never been my intention to hurt anyone. Some days I think it might be easier to be a more depressed and negative person with cancer, and then perhaps the expectations would be lower. I know you all want to see me continue to fight from a positive place. I want that too. You miss the old Ann, I do too. Trust me, I really do. In the end, you really can’t know what this burden is, the full package of it, the pain, the fatigue, the frustrations, the waiting, the fear, the uncertainty, letting go of expectations of what you thought your life would be, the money, the stress, all of it – you can’t know unless you’ve lived it. It’s really really hard. And a lot of days I’m mad, and really trying hard to work through that. Imagine having the worst day of your life for a consecutive 1,147 days (to clarify, not all of these days have been bad, but they are all, collectively, worse than the 51 years of days that came before it). Anyway, it can make a girl real mad.

So I’m not trying to make excuses for bad behavior (well I guess I am), but I am asking for some of what I also need most right now, patience. Most days I am still that person living my life from a place of joy and love. Some days, some periods, it’s just harder to get there. This has definitely been one of those periods. But I also hope this serves as a good reminder to all of us supporting loved ones through difficult times. Be aware of expectations (I once heard expectations are “premeditated resentments”). Know that we realize we’re not easy to be around some days. And allow some space for the hard, dark, angry, sad days because they WILL happen, and as long as we don’t stay there, it’s ok to have them.

Onward and upward. Here we come new surgery date! No point in holding on to anger about it, I finally have something locked in now and I can spend the next 18 days being excited about it! And that’s what I plan to do. Thank you for ALL of your support, on the good AND bad days, loving me through this. I couldn’t do it without you.

Another Disappointment

Many of you in my support network already know what happened today. Surgery was a NO GO. And once again, I am faced with handling disappointment and remembering how to rise up. You know, my journey really has been pretty smooth overall because, in the end, I am responding well to meds and very much alive. For ovarian cancer, I’m beating the odds – it’s been strong progress forward the whole time. But it doesn’t mean there haven’t been setbacks like this that feel like a real gut punch. I am struggling today. It’s the second time I’ve gone in for surgery and come away with a heavy heart. When I went in for my hysterectomy the first time (“the first time” should be your clue here), they got the scope in to start the surgery and decided NOPE, we need a cleaner field and more chemo, closed me up, and I woke up in recovery to learn that the surgery hadn’t happened at all.

This was pretty similar although thankfully I wasn’t on the table yet. I had pre-op appointments this week, labs were drawn, scan, EKG, etc. – all the usual things and everything was signed off as ready. Yesterday I had the really fun day of an all liquid diet finished off with a chaser of “bowel prep” to really clean me out. Slept 2.3 hours to arrive at the hospital at 5:30 this morning. Prepped, IV in, happy juice flowing (this has helped a lot today)… Then the anesthesiologist came in and said, “you are extremely anemic, have you been feeling fatigued?” Um yes, just like I’ve mentioned several times this week to several nurses as I waited for lab results from TUESDAY. Hey, have those results come in? I would be surprised if I’m not anemic again. Well I guess someone dropped the ball and that wasn’t flagged earlier in the week. So this doctor decides no surgery until I get some blood, and they also put in an arterial line in my other wrist so they could draw blood and check my levels during surgery (and more closely monitor my blood pressure). My surgeon came in, said we’d push the surgery to later today, and all was well. Then I guess he went off and thought about it, or consulted with someone, I’m not really sure what happened, but he came back in and canceled the surgery. He just didn’t feel right about it. He has requested I see my cardiologist on Tuesday (appointment already made) to see if she thinks I am okay for surgery (did I mention a perfect EKG already?) or if she wants to do a stress test. But my anemia isn’t a problem with my heart. It is a listed side effect of the medication I’ve been on for cancer for almost a year. I’ve had several transfusions because of it. Anyway, they got me all unplugged and sent my drugged-up, bandaged-up, bruised-up, sad and frustrated self home. Well first to eat though – so that was a bonus!

He has said he would fit me in next week. We’ll see how Tuesday goes because that all depends on if the cardiologist is ready to sign me off for surgery. I’ll definitely need more labs drawn, and possibly more blood (thank you AGAIN to all you donors!!!). I’m spending today being sad and frustrated about this setback. But that’s what it is, a setback, a disappointment, not a tragedy, so working on perspective here. And I am super clear that while this was the path it took today, I just wasn’t supposed to have surgery today for whatever bigger reason – call it Divine Order if you will. I feel like the guy who decided to cancel his flight at the last minute on that plane that went down. I trust this is the way it is supposed to be. But that sure doesn’t help my heart at the moment. It’s all the things ya know? Having to do all the pre-op and prep again, being stuck again and again. And most definitely, the mental and emotional prep leading up to surgery.

I feel like I’m wearing out my support network as well. All the love, notes, calls, and prayers over the last few days and now you gotta do it all again next week (hopefully). I don’t know how to express that gratitude to you except to say thank you from the bottom of my heart (which is super strong and ready for surgery by the way). Your words, thoughts, and prayers really lift me up over and over and over and over. I am very clear that’s part of the reason I am continuing to soundly kick cancer’s ass (even though she put up a mighty protest today!). Love you all…

What To Expect

Some people want the specifics, some don’t. If you do, here’s what I know after this full day of pre-op appts. Surgery is expected to be 2-3 hours, starting at 7:30am on 9/1 at Northside Hospital. Likely 4 days in the hospital, and 6-8 weeks of recovery. We won’t have pathology results until a week after surgery. 

Thank you in advance for all of your love and support, prayers, and good mojo. Will update the blog when I’m awake on Friday.