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. ┬áThis 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.

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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. 

It’s ON – Surgery is 9/1

I met with the new surgeon last week and it was awesome. He walked in and said “I can get those lymph nodes out. I wouldn’t do this if I couldn’t get all of the cancer, and I can.” And just like that, we’re busy scheduling surgery. He was so confident, and really put my mind at ease immediately. Dr. B says he’s the best in the country. Can’t ask for better than that! I saw Dr. Benigno earlier this week and he is really excited about this. We’ll decide everything about what happens AFTER surgery when it’s done. It’s likely I’ll stay on some treatment, just to continue to reduce the risk of recurrence.

So surgery is next Friday, 9/1. It can’t be done laparoscopically because the nodes are too deep (closer to my spine) so it will be a belly cut, a few days in the hospital, and a longer recovery process. But y’all cancer free. Yeah it’s worth it. You know what else is super cool about it? It’s the first day of Ovarian Cancer Awareness month. I will celebrate being aware that I no longer have ovarian cancer. Sounds about right.

I have pre-op and a scan before then – don’t really expect any news from that. But I’ll keep you posted. Thank you for your continued love and support! This is so exciting!!

 

Maybe and Waiting

Well it’s been an interesting 3 weeks since the Cancerversary blog. If you read it, you will know that it was largely focused on being resigned to this life, letting go of what’s next and just living my life where I am. And then things shifted. Isn’t that always the way it is? How many stories have you heard of women who tried and tried to get pregnant only to adopt and THEN get pregnant? Or someone waiting and looking for love only to find it after “giving up”? So yeah, I’m reminded that it’s only when we let go that things can change. So this is mostly a medical update, with a request for all your mojo, prayers, love, and light.

A bit of background – my tumor marker number has been down in the 10 range really since I got through the first 2 rounds of chemo back in 2014. It went up some after surgery (to be expected) but then came right back down. The CA125 isn’t very reliable and not a great indicator for some people, and that could be true for me. But my answer has always been that while I might have some spots that show up on a scan, I believe it’s just not “active cancer” – it’s not growing or spreading. But Dr. Benigno has kept me in treatment because for the last year, I have 2 lymph nodes in my pelvic area that are “questionable”. And at every appointment he reminds me that he has taken out lymph nodes that were very large and lit up on a PET scan, only to find they were not cancerous. But they are in an area that he always felt was too risky for surgical removal. However, at my last appointment in late July, he told me about a new doctor in town (previously at MD Anderson) that specializes in surgery in that area. He was going to consult with him and let me know if he thought he could remove these lymph nodes. He seemed pretty confident because he canceled my upcoming Avastin infusions (you have to be off of it for 6 weeks before any type of surgery as it is somewhat of a blood thinner). And then the waiting. And waiting. Finally last week the news came back, yes, Dr. Abdalla thinks he can do this. I have my consult appointment with him tomorrow, and a follow-up with Dr. Benigno on Monday. I hope to know more then. I feel sure I’ll have to have a scan before a final decision is made since my last one was back in March.

But this is huge. If they take these out and discover they are NOT cancer, I am truly cancer free and likely taken out of treatment – although I suspect he will want to keep me on one of the PARP inhibitors that significantly reduces recurrence risk. If they take them out and discover they are cancer, I am still cancer free – my guess is he’ll add a round of chemo follow-up of some sort, but still, cancer free.

It’s exciting. It sounds weird to hope for surgery, but that’s where I am, although I am trying to prepare for a different outcome in case it doesn’t happen for some reason. So I’m requesting that you please continue to send your powerful thoughts my way – that the next steps are clear and the universe is conspiring for my complete and total healing. It’s ok just to pray for a successful surgery too. I’ll keep you posted when I have some answers. I was going to wait and post everything after I knew what was happening, then my bookclub girls reminded me how powerful it is to have all of your energy focused with me and for me. So thank you Jana, and thank you all for your unwavering support and love!

Cancerversary – 3 years!

Yes, 3 years ago today, I was diagnosed with Stage 4 ovarian cancer. For you blog followers, yes, it may be stage 3 and it was once called peritoneal, but the official paperwork all says Stage 4 ovarian, so we’ll go with that. As I have the last 2 years, I spent the last week re-reading the blog (106 entries and over 64,000 words). While some of it really makes me sad and depressed, it mostly serves as a reminder of how far I’ve come in those 1096 days, and how blessed I am.

On that day, and on many days since that time, I wasn’t sure I would live 3 years. So it IS a day of celebration and gratitude. I am a survivor of a late stage progressive form of cancer. I still don’t look much at statistics, but I’m betting mine are getting better than they were on day 1. So I WILL celebrate and rejoice and dance every single day. I sometimes forget to do that when I’m down. I forget to be so very grateful for another day. Maybe because I’m not as terrified as I was in the very beginning, but I’m reminded today about gratitude.

But like the last 2 anniversaries, it is also a mixed bag. On the first anniversary I was so full of hope – I had good results with chemotherapy and surgery, and was on what we thought was an “insurance punch” of chemo before being declared cancer free. So I didn’t feel great, but I was so sure I was finished. That “cancer free” period lasted less than 2 months. For year two, I was in a pretty dark hole – depressed and really having trouble adjusting to a new normal. This year, the word that keeps coming up for me is resigned. I’ve always seen that word as so negative – it feels synonymous with giving up. Today I finally decided to consult with Merriam-Webster and resign is defined as “to give oneself over without resistance”. And that really is a pretty good definition of where I am. I wouldn’t say I have given up, but I am certainly resigned to the fact that this gray area I find myself in right now might be my path. I still struggle with how to communicate this piece – perhaps I am just more at peace with where I am right now than I have been before. I have integrated cancer into my life but continue to deny it any control over me. The doctor isn’t sure I have any cancer. Neither am I, but I am pretty confident that IF I do have some cancer cells left behind, they just aren’t doing anything. They have no power. They aren’t dividing and spreading. I don’t feel panicked about them being there. I just feel more at peace. So if that means I’ve accepted cancer as part of my life, then so be it. It doesn’t mean I won’t keep praying for perfectly clear scans and a life completely cancer-free, but I can’t go back to that place where it was super high highs followed by the inevitable “but” that came later. Is that bad? Does that seem like I’ve given up hope? Or is it just okay that I’m resigned to this life, what is in front of me today, instead of really being so focused on where it’s going?

It definitely doesn’t mean I don’t still have really down days, days where I’m really scared, days where I mourn the life I had, the life I thought I was going to have, and those days where I feel really awful physically which impacts my head game too. I am tired of side effects of drugs but I continue to believe it’s important to stay on them anyway because these side effects are better than letting any disease run unchecked. Three years. I’ve never had even 2 months away from treatment. The small breaks I’ve had, like before and after surgery were never much more than a month. Lots of chemotherapy drugs – 18 weeks of Carboplatinum and Taxol, 3 months of Doxil, 9 more weeks of Carboplatinum, 12 months of Topotecan, and now (not chemotherapy) 20 months on Avastin and 8 months on Lynparza. Gladys the Power Port has worked well for me, and far more often than either of us thought when we first got together. I’ve had some really awful days in the last 3 years, but I’ve also had some really awesome ones. And really, doesn’t that describe all of us? So it’s a day at a time. Keep moving forward. Kickin’ cancer’s ass all the way. Fine, you moved in, but we aren’t rolling out a welcome mat for you or allowing you to bring your friends. Sit down, shut up, and get out of my way. I’ve got some living to do.

Blog tip – if you want to read the blog from the beginning or know someone who does, the link is https://annpinyan.wordpress.com/?order=asc

Option 3

I don’t even know where to start with this update. Let me get to the medical details first and go from there. Saw Dr. Benigno a couple of weeks ago for my regular monthly appointment. He continues to be pleased. We talked about my pain level lately and I asked about getting out of treatment some day. He said “you know, I don’t even know that those shadows on your scan are cancer – you might be doing this for nothing… BUT if I take you off, and it IS cancer, then it can get worse.” In the end, his ideal plan for me is some treatment that is less invasive, not so hard on my body, but alas, that hasn’t been developed yet. But he is confident, with the way research is moving these days, it won’t be long. How long is that? Yeah, no idea. But it seems clear that I’m on this protocol for the foreseeable future, until something better comes along. Or, as I keep reminding myself, until I have a couple of completely clean scans. Speaking of which, scans every 6 months now since my number is consistently in the 9-11 range. So the next one will be September. 

So once again, I don’t want to feel or sound ungrateful for where I am. I am coming up on 3 years with late stage ovarian cancer, and I am stable. I am living with cancer, not dying from it. THAT IS THE MOST IMPORTANT PART. And I would MUCH RATHER have pain and other side effects than to be dying of cancer. However, I would really like a 3rd option. I think it’s time for my 3rd option. You know, the one where I can just live a completely normal life again. Well maybe not normal, but normal for a survivor. 

June kicked my ass y’all. It was filled with things like graduation and graduation parties, college orientation, college move-in, and we also moved our office home – the house is empty, we have the space, and we need to do this for a while to get things rolling. When we move back into an office, it will be to accommodate a bigger business with an employee or two. Anyway, here’s what I learned. I have a LOT of pain, still, mostly in my feet, and in my lower back. And I am so so tired. BUT, I have a lot more energy than I had 6 months ago and am feeling more and more like myself. I did see a rheumatologist last week to talk about my Harry Potter curse (see last blog), and she ran a lot of tests and took some X-rays of my feet, so I’ll be anxious to see what comes back from that later this month. 

In the meantime, I am trying to move more, in spite of my pain, in order to try to regain some semblance of my normal old life. We’ll see. Maybe I’m supposed to just accept this is my life now. What if there isn’t an Option 3? Then I guess I just learn to live with the pain and side effects and remind myself that I’m one of the blessed/lucky ones because I am living with cancer and not dying from it. Yay. I’m living with cancer. yay.