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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