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. 
 

It’s actually NOT a Harry Potter thing

I guess everyone who has cancer or has had cancer figures out at some point how to live in a “new normal”. I have weird things happening in my body and can never be sure if it’s cancer, left over chemo side effects (the running “rule” is that it takes 6 months to clear your system, and I’ve just passed the 6 month mark so hopefully this is no longer on the list), side effects from current drugs (Avastin – infusion, Lynparza – pills), some other issue brought on by long-term use of chemo (like arthritis), or something completely unrelated. I don’t know that it matters so much unless it’s actual cancer, because either way it needs to be addressed and treated if possible.

The latest medical issue to come up (that I mentioned in passing in the last blog) came from a biopsy at my dermatologists office (because I also have skin issues unrelated to the ovarian cancer). A biopsy came back and showed that I tested positive for a condition called polyarteritis nodosa. Someone was quick to point out how that sounds like some Harry Potter spell. But it’s not nearly that fun. It is a form of vasculitis. Next steps included some additional blood work and a referral to a rheumatologist. The blood work didn’t really give a definite answer as to whether this is a systemic problem or a small more localized issue, but one of the side effects can be muscle and joint pain. Which I have aplenty these days. My oncologist and dermatologist are not very alarmed. In fact, I believe Dr. Benigno wasn’t surprised as this is related to kidney function and Avastin can impact kidney function. He was of the “wait and watch” opinion. But since the dermatologist sent me to the rheumatologist and since I feel pretty awful these days, it seemed the right next step. Oh, and unless I’m too late, I don’t really recommend employing the use of google when seeking more information about polyarteritis nodosa. The first things I saw were discussions around the 5 year survival rates and recurrence rates. Really? I mean REALLY?

The great news from Dr. Benigno’s office with my last visit is that they feel confident enough about my stability that we are moving to scans every 6 months instead of 3. I feel both excited and terrified by that. I’ve never been super confident that my CA125 is very responsive. It’s been the same for so long and it never really moved much when I had the little spots on my scans. I’ve always said that was because it wasn’t really “active” cancer but who knows? I don’t know that anyone ever really gets past the fear part – maybe it fades some or changes over time, but for me right now, it’s a struggle to stay out of fear. It makes me feel more at ease that my doctor is happy with where I am, although they will not clear me because of the two inflamed lymph nodes in my pelvic area. He has been clear that it may or may not be cancer, but it’s not growing and he’s not alarmed. So neither am I. Most of the time.

I’m super tired lately. But look, people who are perfectly healthy would be tired too. First it was graduation week with several events and a lot of walking and standing. That was followed by concert week with my chorus, rehearsals and a day of performances. The day after the concerts we left for college orientation with our son – yep, longish drive, more walking and standing and activity. And in 2 weeks we move him to school so there’s some packing, loading, unloading, and unpacking, and the driving. I’m anemic and I suspect headed to the level where I will need a transfusion. And I am having some huge problems with my feet – so painful. Which brings me back to why? Arthritis? Some form of neuropathy? Polyarteritis nodosa (without the wand)? Something different? Today I’m going to try to move up my rheumatologist appointment, and possibly schedule an appointment with my podiatrist to see what he can figure out. Oh, and work is crazy busy too, so it’s not like I can get some real downtime to rest.

And then I’m reminded to be grateful. I’m coming up on the 3 year mark, and I’m beating this cancer. So I’m going to suck it up, hold my head a little higher, push through the pain and the fear and the tired, and as my friend Donna would always remind me, I’m going to Keep Moving Forward.

It’s My Turn

You know, given some people’s journey with cancer, I really shouldn’t complain. I mean, for the most part, my cancer is stable and controlled if not yet in full remission. I haven’t had to be on chemotherapy since November, and I’m tolerating the meds I’m currently taking pretty well.

But I’m going to complain anyway. These last 3 years have been very hard. Or maybe it’s just that the prior 50 were too easy. I don’t know. I guess I’ve lived a pretty charmed life – raised in a loving home, given amazing opportunities to have a good education, landed in a major in college and subsequently a career that I have loved and one that fortunately led to financial security, met and married the love of my life, raised amazing and loving sons, and really had very few significant bumps along the way. Coming to terms with being a lesbian wasn’t easy and I’ve seen my share of discrimination and hate over the years for it, but in the end, I live my life out loud with few negatives.

And then, 2014 happened. I got laid off from a big job with a big company. That wasn’t such a big deal I thought – I’d been there before and it had the ultimate result of moving me into a better job at a better company, so I faced that with optimism. Then I got sick. And sicker. And misdiagnosed. Then accurately diagnosed with stage III/IV ovarian cancer. And quite frankly, it’s been a shit show ever since. We bought into a franchise business a couple of weeks before the diagnosis and have spent the last 3 years trying to build a business and fight for my life at the same time. We’re still not where we need to be. We still have to think hard about being able to eat out every now and then. And plenty of ups and downs in the cancer battle. And then you know, life still happens too, so Dara’s son moved in with us because he hit a pretty serious depression period in his life, then one of Julian’s friends moved in, then this year Dara’s son moved out and another of Julian’s friends moved in, and I’ve helped my elderly mother through 2 major surgeries in that time frame as well. Oh and I’ve had skin cancer removed and am now facing what looks potentially like another (related or un-related??) medical issue. I’m exhausted and I hurt all the time. Is it cancer? Is it lingering chemotherapy side effects? Is it side effects from my current meds? Is it this new issue? Is it completely unrelated to any of that? Who knows. But what I do know is that I’M DONE. I’M READY FOR A BREAK. When will it get easier instead of harder?? I don’t think I need to be stronger, or get in touch with my power, or have more strength of character, or turn any more obstacles into opportunities, or any other “you’ll get through this and be blessed for it” cliches.

I’m not looking for your sympathy. I’m really not. Like I said, I’m blessed to be living with cancer instead of dying from it. I’m hyper aware of that. But I committed to honestly share my life with cancer through this blog and it’s important to remember that cancer impacts lives far beyond the physical aspects you see. Know that your people dealing with cancer are likely dealing with financial issues and insurance woes, and that all the other “life stuff” just gets a little harder with cancer in the mix too. I’m generally a positive person – my glass has always been half-full, but days like today (and frankly many of the last 1028 days) really make it hard to keep my chin up and push through. I am just ready for a break. It’s my turn dammit. I’m ready for the easy stuff, you know, the part of the story where the sun breaks through the clouds, the cancer is cured, the money flows easily, and they live happily ever after. I’m ready. So come on already.

 

World Ovarian Cancer Day

Make a Donation on Ann’s Page

Next Monday, May 8th is World Ovarian Cancer Day and I am helping to raise money for the Ovarian Cancer Institute. My personal connection to this is pretty obvious, but my choice of organizations might not be. Let me tell you more about that. I joined the board for the Ovarian Cancer Institute not long after I was diagnosed. I wanted to find some way to get involved so I did some research and ultimately decided this was the organization I wanted to support with my time and my money. There are quite a few organizations that are focused on ovarian cancer – OCRFA (nationally based – research, advocacy and outreach), NOCC (nationally based with local chapters – advocacy and outreach), and GOCA (local – advocacy and outreach – big projects are the Teal Trot and the patient care packages) are probably the best known. While I fully support the other groups, and participate in some of those events, I chose to serve with OCI because they are local, and because of the primary focus on research, specifically in these 2 areas:

  1. Early diagnosis – The lab (at Georgia Tech) funded by OCI has developed an early detection test that is 100% effective. They are now in the process of collecting enough samples of early stage ovarian cancer tissue to complete the FDA approval process. Clearly those samples are hard to find but they are close!
  2. Better and more targeted treatments (very sciencey topics like genome based personalized medicine and targeted RNA-Based Therapeutics – Optimal drug predictive algorithms and direct tumor treatment projects have had very positive results. The research team was recently published in the prestigious Nature Scientific Reports for the success of eradicating tumors in models through unique nanotechnology that can only be created at Georgia Tech.

If you would like more information about the institute or the current research studies, please visit our website: Ovarian Cancer Institute

So this is my once-per-year plea for money. This work will save lives. I can’t think of a better cause. Thank you for considering it and thank you, as always, for your support!

Make a Donation on Ann’s Page

Donna

My friend Donna died yesterday. I met Donna several months after I was diagnosed. Our mutual friend, Connie, reached out to me offering to introduce us to another lesbian couple dealing with ovarian cancer. Donna and I laughed a lot about that over these few years – both of us went into it kinda thinking, yeah, ok, we’re lesbians, we should know each other. But Connie did us a huge favor that day. The 5 of us went to dinner and I met one of the kindest, strongest women I will ever have the privilege of knowing.

Donna’s motto was Keep Moving Forward, and she lived that every single day. She was my go-to when I wanted to know about side effects and remedies, unfortunately because she had been on all the drugs I eventually had. We talked often and developed a true friendship, and the 4 of us spent some great times together – Michelle Malone NYE at Eddie’s, fishing at Opal’s, dinners out, dinners in (that Deb, she is brilliant in the kitchen), NYE at Opal’s, and we were privileged to join them for their wedding. The next year, my friend Beth was unfortunately diagnosed with ovarian cancer as well, and we soon became Team FOC (F*&# Ovarian Cancer). For most of the next year, unless Donna was on some bucket list trip (and sometimes even then), we had a group chat every single morning. We talked about EVERYTHING, but honestly it usually got around to who was pooping well and who wasn’t. Welcome to cancer y’all. We talked about our numbers, our fears, our treatments, and our remedies, and we supported each other in ways that no one else really could because of our shared experiences with this horrible disease.

I feel this loss in such a profound way and will speak more to that at a later time. For now, my heart is broken, and yes, I am so glad she is finally at peace. Hers has not been an easy journey, particularly these last 6 months. I am forever grateful to her for taking me in and helping me learn the fight, to Keep Moving Forward, even on the days you don’t want to, and to live your life savoring every moment. My heart is with Deb, and their large powerful tribe of family and friends (many of whom I have come to know and love) who are faced with immeasurable sorrow and pain. She was my hero and I told her I would continue this fight with her in my heart. I’ll take every bit of fierce she brought to the fight and carry the torch for her. I promised her that. And to all of those who knew the love of this wonderful woman, I leave you with this:

Do Not Stand At My Grave And Weep
By Mary Elizabeth Frye 

Do not stand at my grave and weep
I am not there; I do not sleep.
I am a thousand winds that blow,
I am the diamond glints on snow,
I am the sun on ripened grain,
I am the gentle autumn rain.
When you awaken in the morning’s hush
I am the swift uplifting rush
Of quiet birds in circled flight.
I am the soft stars that shine at night.
Do not stand at my grave and cry,
I am not there; I did not die.