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.

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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.

Team FOC Update

If you’re a part of my life, or even just a regular follower of this blog, you’ve no doubt heard me talk about Team FOC (F#@% Ovarian Cancer, or if that offends you, can you make the F stand for Friends). One of my sweet friends and the founding member of Team FOC transitioned to hospice earlier this week and my heart is shattered. I met Donna soon after I was diagnosed and she has been my rock, my educator, my friend, and my support. She is a fierce warrior and has fought with so much dignity and grace. I really REALLY hate this for her and her wife Deb, and their wonderful network of friends and family. And I’m trying to prepare for what will be a very emotional loss for me, losing my first close friend, and losing a cancer partner with the same disease.

So, if you have a moment, please send your loving energy and prayers to Donna and Deb as they move through this together. No pain. Peace and love to you my friends.

Reality Check

I’ve been telling people I feel better than I have in 3 years (diagnosed in July 2014, but was sick long before that). And while that is true, cancer has a harsh way of reminding you it’s there. That reality check can really be a gut punch. And none of this is really serious, but now that I’ve finally started feeling like myself again, it’s disappointing to hit bumps in the road. These last few days have been sobering. So, what happened?

Well it started at my last infusion, the 24th. My blood pressure was up, enough that it alarmed the nurses and they called my doctor. They administered a drug to bring it down (which led to me almost fainting when I stood up), and referred me to a cardiologist. Avastin can cause your blood pressure to go up, and mine had been “creeping up” over the last month or so. Not sure why that would happen after being on it for 16 months, but it did. Saw the cardiologist on Thursday last week and she confirmed, yep, this looks just like the rest of Dr. B’s Avastin patients. So now I’m on blood pressure medicine and pretty irritated about YET ANOTHER THING. And it’s not been fun adjusting this weekend. I really haven’t felt very good. I’m hoping these side effects pass soon for this drug that I’m taking because of side effects from another drug.

I’ve also been pretty busy the last week or so – long hours at work and a fairly busy weekend. Add to that getting ready to send my kid off to college (which is exciting and scary and expensive), and some pretty serious emotional things all around me with friends and family – so much pain, both physical and emotional. I’m sad for them. And I’m tired. It’s frustrating to feel so good, but to really have to acknowledge that I’m still not 100%, and I’m still taking drugs that wear me down. So I have to remember to take care of me, to pause, to rest, to listen to my body.

I’m so grateful to be where I am. I saw Dr. B last week – I had an appointment for my regular check-up and he came in to congratulate me on my recent scan. It is clear he is very pleased with where I am. While I still hold out hope for a day when he can say I’m cancer-free, I’ve learned to be pretty damn happy with stable. The report says No Evidence of Disease Progression. So I will celebrate NEDP if I can’t celebrate NED yet. Maybe one day that can still happen, but for now, I am grateful I can live a full and happy life like this, even if I do need a minute to pause every now and then.

Scanxiety

It’s real. Everyone who has ever had any kind of cancer is scared about scans. I mean, I meditate and visualize good news and pray and stay positive, but I just think it’s impossible not to have some fear. It’s not irrational fear… I mean at least one scan came back with very bad news at some point. So anyway, I’ll cut to the chase with my results, then talk more about this.

The doctor is very pleased with my results. And when he’s very pleased, so am I. There is no evidence of new disease, and best I can tell, the spots they are watching are not exciting – either no changes or small reductions. I don’t know if those spots are cancer, but it seems evident that they aren’t active cancer. So this treatment is working – keeping cancer away. I am thrilled. I plan to ask him more about what actually IS there when I see him next week but all I need to know today is that this is good news.

I was really stressed about this one, for several reasons. I have some odd pains lately, and what seem to be persistent swollen glands in my neck. Those are lymph nodes – y’all nobody with cancer wants swollen lymph nodes EVER. Also, my FOC team has been on my mind and in my heart a lot lately. It’s hard to watch friends suffer with bad news and sickness. And to know it could be and might be me someday. And it’s really hard not to feel some guilt about good news. It’s a weird thing but I think it’s fairly common in groups of friends that support each other through cancer, so today I’m balancing my jumps for joy with a tinge of guilt and a lot of love and light to my friends. I just want us ALL to have good news.

And finally, our son just committed to a college (Go UCF Knights!) and I was so scared this would be bad news and he would want to stay home or feel like he should. Now we can really move forward with this exciting time in his life without him worrying about what’s next for me.

Overall, I feel better than I have in 3 years. My energy is better and I’ve finally adjusted to the Lynparza nausea. I mean, I still get tired faster than “normal” and I still have my moments with nausea, but it’s so so much better and I’m very grateful for that. Thank you for your continued love and support in this. I can’t tell you what a difference it makes. I asked for your prayers and support today with my level of scanxiety and I really felt you lifting me up with all of the messages sent my way. Thank you for that. It kept me from passing out in the waiting room. I love y’all a whole lot.

Hey – we’ve got a fundraising campaign coming up for World Ovarian Cancer Day and we’re making a video that will include pictures of people honoring women in their lives. If you know someone who did or is suffering with ovarian cancer, take a pic of yourself holding the attached sign with the person’s name in the blank spot. For example, my son wrote “My Mom’s” in the blank. Don’t all send with my name because that will be too many Ann’s. 🙂

You can send them to me at ann.pinyan@gmail.com. We need them by April 1. Thanks y’all.

In Her Honor Sign 2017