It’s Not You, It’s Me

Hi. I know it’s been a while. It’s not you. It’s me. Really. I just needed some space. Seriously, don’t cry. It’s nothing you did. It was all me.

Why yes, I am back with a new blog entry. It’s mainly because I’m bored – I’ve been on convalescent leave for the past week. You’d think a week and a half off of work with a large quantity of prescribed narcotics would be fun. It’s not. I alternate between being too high and too sore from surgery to do anything. When even watching television takes too much energy and concentration, it’s bad. A walk to the beach 2 days ago wiped me out. (For reference, the beach is a 1 minute walk away.) The good/bad news is I still have 5 more days off of work. Five. More. Days.

The last time I wrote anything was November. We had just moved in to our rental place on the beach and I was starting training for my new job. I was supposed to be, but not highly motivated to be, looking for a new oncologist out here. We fell in love with our little beach town and promptly bought a house overlooking the Gulf and settled in with our pup Dexter. With so much space, we went and rescued an in-danger-of being-put-down-next mutt. She’s a pain in the ass sometimes, but Lucy is (mostly) a good girl with a huge heart who completes our little fluffy family. I also finished training for my new job and all was good here in Florida.

After much foot dragging, I started the process to find a new doctor and fulfill my promise to my old doctor. I quickly learned that while where we live is a tiny little paradise, the medical system is not quite up to par with what I was used to in L.A. It took days to find the specialist I needed and eventually we found 1 (ONE!) in a 3 hour driving radius from where we live – and he’s not even in my insurance network. Happily, TriCare has no problem covering all of my medical bills anyway.

***Quick recap for those of you joining the program late – feel free to skip over this paragraph if you’ve read my ramblings before*** In 2012, I was supposed to deploy to Afghanistan. One of my pre-deployment tests came back juuuust wonky enough to prevent me from going. That one itty bitty test that I wasn’t even due for for another 2 years saved my life. After much testing and biopsies, I had a rare, aggressive, already-invasive cervical cancer. After 1 major and 2 minor surgeries and the removal of most of my lady-bits and a whole bunch of lymph nodes, I was declared NED (No Evidence of Disease – we don’t get to say ‘cancer-free’ until 2017). Due to the scarcity of info on the cancer (my favorite was finding one sentence about it in a medical textbook under the heading: Other Rare Cervical Cancers), we *think* it has about a 35 percent chance of recurring. Recurrence is bad. Recurrence drops my 5-year survival rate from 85%-ish to 15%-ish. Because of that, we chose not to do chemo and radiation and instead save the big guns for the future if needed. (You can generally only use a round of radiation on an area once.) Follow-up appointments were once every 3 months for 2 years, and once every 6 months for 3 more years, then you get to party your ass off and be declared cancer-free. At my 2-year checkup, my tests were once again ever-so-slightly abnormal, and my oncologist made me promise to get set up with a new doc here in Florida ASAP and to have further testing done. And he told me I would not be ‘graduating’ to 6-month checkups. Jerk.

Now fast forward to today. In February, I finally went for a checkup with my new guy in Pensacola. 3 freaking hours away. He did some more tests and saw 2 teeny-tiny spots of concern that he thought were probably mild cellular changes that would likely regress to normal on their own. Luckily, he decided to go ahead and biopsy one. After much phone tag, tears of frustration, and wanting to throttle his office staff as time passed with no answers, he finally called me back with the results. Instead of the low-grade changes he was expecting, I had instead graduated to high-grade cellular changes on what lady-bits I have left. Essentially pre-cancer that needed treatment now. He recommended surgery as soon as I could get in to check more thoroughly, take more biopsies, rule out cancer, and then laser the crap out of everything to remove any abnormal cells that might be even thinking about turning into cancer. Yay me. Luckily, he informed me that it is NOT a recurrence of the cervical cancer.

After doing some research, it turns out I have hit the rare lady-bits cancer jackpot. What I have now is generally found in older women – like 20-30 years older than me – and has an occurrence rate of around two in a million. So unfortunately, I basically have a new, second cancer hanging out in the wings, waiting to make an appearance. There is no standard treatment, because it is so rare. What treatment there is, is barbaric as f$^k quite frankly. Menfolk, avert your eyes for this next bit. No, really – you probably don’t want to read this. Last chance to go read ESPN’s website or something manly instead. Ok, you had fair warning. So. Treatment for this pre-cancerous crap I have is generally internal radiation (yep, internal radiation – ladies, guess where that goes?), a topical chemotherapy that has been referred to as ‘hell in a tube’ that no woman who has used it recommends, a partial or total vaginectomy (yes, that is exactly what it sounds like), or the much less invasive surgical removal and laser ablation – which is what I had done. Unfortunately, the success rate for what I had done is around 50%. If this last surgery didn’t work and it comes back repeatedly, then we get to start looking at the other options. Again, yay me.

Ok menfolk, you can come back now. Icky lady-part discussions are over. On to talk of cute nurses and drugs – yippee! I had my surgery last week at Sacred Heart in Pensacola (you fellow Scrubs fans out there have to know how happy this made me) and I was pleased to discover the lack of giving a shit I’d dealt with previously is apparently only confined to office staff. The nursing staff was outstanding – I daresay better than at UCLA. They made me laugh, they got our warped sense of humor, and best of all, they gave me drugs in my IV (twice!) when my surgery got pushed back 3 hours. (When you’ve already been fasting and haven’t had coffee, 3 hours is a HUGE deal.) I cannot say enough good things about them. When I finally rolled out of surgery, they were there to gently wake me up and generally be nothing but sweetness to me.

Then my doctor had to show up and be a big old buzz kill. While initial reports from the lab were that none of the biopsies were cancerous, he found 4 spots of pre-cancerous dysplasia this time. Given that this stuff is supposed to take years to develop and get anywhere approaching cancer, I progressed from being clear in August, to 2 high-grade spots in February, and then to 4 high-grade spots in April. This does not make for a happy Samantha. I’ve got a follow-up appointment in a week and a half, and then I’m still on the tests-every-three-months follow-up schedule until I get 3 normal tests in a row. I’ve resigned myself to the likelihood that I may never have 3 normal tests in a row, and that I’ll be dealing with this for a while. Pessimism? Maybe. Reality? Maybe. But I’ll get the joy of being pleasantly surprised if it turns out differently. And I have noticed that this time feels a lot different than the last go ’round. Sure, waiting on test results and doctor’s appointments tend to make me insane for a day or two, but I haven’t once woken up furious, I haven’t lost sleep, and I haven’t once worried about my impending demise. I’d call that real progress from where I was in 2012.

For now, I’ve got some lovely narcotics, a husband who is keeping my mood up by tormenting me as I recuperate, and two pups who follow me everywhere and curl up with me every chance they get. All of this AND I still get to live at the beach? I think I’ll manage just fine. I’ll still stress every time I have to wait on test results, but in general I’m content with the fact that if any of this crap turns cancerous any time in the near future, it will be caught and dealt with very early. And we’ll cross that bridge if we come to it. Until then, I’ll be off living my life and enjoying the hell out of it as much as possible. Peace out, yo. I’ll write more when there’s more to tell. Right now, I’m off to the beach to see if I can walk there and back without needing a nap. Fingers crossed!

P.S. If there are any ladies with a similar diagnosis who find this via Google or some other roundabout way and have questions or just want to chat, please let me know. I am more than happy to share info I’ve learned from reading research papers and other resources, to answer questions, and to direct you to support groups.

  1. Dean Inouye says:

    But were they sufficiently impressed with your back tattoo?

    • samiam0403 says:

      Only the ones that were in the operating room with me – those hospital gowns have come a long way! 😉 But they were suitably impressed, as were the ones who saw the piece on my arm.

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