Something I realized today

I had my oophorectomy one month and three days ago. And in that time, I haven't had a period. I just realized that today. LOL I got my first period at 13 years old (so 30 years ago). I can't say that I'm upset about not having to deal with that nonsense every month. One of the (few) perks of this journey. :)

They said to go home

(Disclaimer: I found this on a bladder cancer Facebook group I am part of. I loved it, relate to it, and want to share it here. I feel like this relates to the BRCA+ journey as well.)

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They said to go home.

They said, "the scans look fine, your body will recover, you don’t need to be here anymore. The cancer might come back, but until then there’s nothing we can do.”

They said to go home.

They said, “go on and live your life. Take a breath, take a nap, maybe even take a vacation. Go back to your jobs, back to your hobbies, back to laundry, dishes, and paying the bills. Spend time with your family, meet a friend for lunch, catch a movie with your loved ones."

It sounded nice when they said to go home.

So we went home.
.

But the home we went back to wasn’t as familiar as we thought.

The paint was the right color and the furniture was in place, but it wasn't the same. Our thoughts, feelings, and interests had changed. Our relationships, jobs, and bodies felt so much different.

They said to go home, so we tried to go home, but it didn’t feel like home.

We felt lost. It was as if we had been on a path, kidnapped somewhere in the middle, turned around 20 times, and set off in a new direction. We didn’t know which way was up or down, left or right. We felt stranded in the desert- abandoned, desolate, and lonely.

They said to go home.

But home was out of reach. The home we knew didn’t exist anymore. We wandered around before trying to build a new home. But the new home crumbled and cracked, forcing us to repair, rebuild, or start completely over.

They said to go home.

But they didn’t understand. After seeing thousands of patients in this position, they still didn’t understand. It looked so simple from their perspective. Go home, go back to your life, pretend that cancer never came.

But we couldn’t go home.

Our souls were altered on the deepest level. Our hearts were shattered, our minds were chaos, and our bodies hurt. They couldn’t see it.
.

Then we saw others. “Do you know where you are going?” we asked.

“No, I feel rather lost,” they would say. “But you are welcome to join, and we can pave a new path together.”

In that moment, though we were all still lost, we felt a glimpse of home. Our hearts connected and friendships formed on the simplest notion of being aimless wanderers together.

“Your thoughts and feelings make sense given all that you’ve been through. Others may not understand, but I can see, because I’ve walked a similar path.”

“You belong here.”

Our hearts began to relax. We took a deep breath of fresh air.

They said to come home.

One down, one to go

I had my oophorectomy on the 17th. It went well. Pathology on my ovaries and tubes came back clean.

Recovery hasn't been bad. I took a week off from my part-time job because it has me on my feet 6-9 hours per day. I worked from home for a week for my day job. The pain was mainly on my right side, which is apparently where most of the work is done. I did have a bit of the should pain the day after due to the gas used to inflate my abdomen during surgery. It went away quickly, though. I couldn't sleep on my side until two days ago. I'm a side-sleeper, so I'm so glad I'm able to do that again. I only took Motrin after my surgery, though I was given a prescription for Norco too.

I haven't really had menopausal symptoms yet. I did have what I think were two hot flashes on Sunday of this week. They made me feel weird but weren't bad and didn't last long. I'm hoping the symptoms stay minor or don't appear at all. I'm not on HRT of any kind. Dr. P. said we'll talk about it at my follow-up at the end of the month.

So now the countdown is on to "the big one." My prophylactic bilateral mastectomy (PBM) with DIEP flap reconstruction is on February 2. I am getting anxious about it. I will be grateful to get it done, but I am definitely anxious. I'm still confident that it's the right decision for me and for my family. But I'm not looking forward to the surgery itself, the hospitalization, the recovery, and how it's all going to affect my kids.

Between today and February 2, I have eight doctor appointments. Not all are related to the PBM. Some are related to my bladder cancer (first of many maintenance cystoscopies), a mammogram that is both the annual one I'm due for and serves as a pre-op one, pre-op visits with my breast surgeon and plastic surgeon, pre-op assessment, post-op with my onc gyn, CT of my abdomen and aorta, and a couple of other things. Lots to keep my mind occupied and lots to worry about.

I guess my biggest wish this upcoming Christmas season is peace in my mind and peace for my family. We need the relief and break.

Tomorrow

Tomorrow is my oophorectomy.

I haven't thought much about it until now. And now that it's right around the corner, I'm getting a bit anxious. I still hate anesthesia. I'm seriously considering writing letters to my family "just in case." I don't truly think I'll die during surgery, but I always know it's a possibility.

I hate having surgery and I'm really over them at this point.

But tomorrow, I'm eliminating my risk of developing ovarian cancer. And that makes me very happy.

People have been so kind. More and more, I'm letting people know a bit about what's going on. So many have offered prayers and well wishes. So many have offered to help with the kids, make meals for us, or do whatever they can to help. And for all of that, I am grateful.

This road started months ago. I had a major detour and some bumps along the way. But tomorrow is the first real, big step toward taking power over the BRCA1 mutation. And I can't wait.

Just over two weeks...

... until my oophorectomy.

I haven't given this surgery much thought since I first made the decision to have it. Therefore, it's kind of crazy to me to think that it's just over two weeks away.

This surgery was originally scheduled for August 4. My pre-op assessment is when a tumor was discovered in my bladder, and things very quickly detoured at that point. I was diagnosed with bladder cancer and have had treatments for that.

And now pre-op is in just three days again. I'm hoping and expecting that it will go fine. But it's hard not to think that it won't, since it went anything but fine last time.

So on November 17, I will be having my ovaries and fallopian tubes removed. After this surgery, I will go into "surgical menopause." I don't think Dr. P. is planning to put me on HRT (hormone replacement therapy), but I intend to clarify that on Friday. I won't be able to naturally have more kids, but I am extremely content with the kids I have, so that doesn't phase me at all.

This upcoming surgery is more life-changing than I've allowed myself time to think about. But now that it's coming soon and pre-op is happening soon, it's on my mind a lot. I am so excited to ELIMINATE my risk of ovarian cancer. I am, as always, nervous about being put under anesthesia for the surgery. But it's a short outpatient surgery (just expected to be a couple of hours), so I hope and expect it to go as well as the TURBTs I've had in the past couple of months. This one does require gas to expand my abdomen, and I've heard that can be a bit painful until the gas works its way out, but I'm okay with that. Small price to pay for some medical peace of mind.

And now I am back to where I have to tell people things. One of my kids sort of knows what's going on but the others have no clue. And some of my family knows what's going on but others have no clue (some really do need to know, others don't). So I have to find time and a way to tell the ones who need to know.

A bit of advice for anyone going through anything similar to what I am: All of this is as hard emotionally as it is physically. Give yourself time, space, and grace to deal with the emotions. Don't feel bad or dumb or selfish. It's hard. But you WILL get through it. You are STRONG and you are WORTH IT.

Overdue Update

So much going on. So many emotions around it all.

I had my second TURBT on September 25. This time, they did a catheter and Cysview blue light dye. It lights up any cancer cells. The intention was to make sure there was no regrowth. They did find a tiny (3mm) hanging tumor. They're not sure if it was regrowth or if they missed it the first time. They did scrape it out. Post-op was harder this time, and more gross (though I'll spare you the details). I'm just glad they got it out.

It's hard to imagine another tumor growing in a mere six weeks. But it's also hard to imagine any tumor could have been missed after an ultrasound, a cystoscopy, and a TURBT. I'm not so much concerned with why it was there. I just want to know if it's going to happen again. Of course, there is no way to know that.

The pathology on the tumor is the same. Slow-growing, early stage. So Dr. H. says if it does regrow, it will likely be slow-growing too. My next cystoscopy is in early January. So now to pray and pray and pray some more that there are no new tumors then. IF there were any new tumors, we'd likely treat with medication (something new that's replacing Mytomicin and has bad side effects but ones that aren't as bad as the side effects of Mytomicin).

So the bladder cancer is under control for now and we've got approval to move ahead with the BRCA stuff.

So... my oophorectomy is on November 17. Removal of my ovaries and fallopian tubes. It's a relatively short outpatient surgery. I expect I'll be working from home the following week and then back to work.

And my mastectomy and DIEP flap reconstruction are now scheduled for February 2. It's expected to be an 8-10 hour surgery with 3-5 days in the hospital afterward. I expect to take vacation days for the time I'm in the hospital and then work from home until I am comfortable to go back to the office. Drains, worry of infection, being allowed to drive... it's a lot to coordinate.

I have a ton of doctor appointments between November 3 and February 14. Pre-op assessment visits, pre-op surgeon visits, surgeries, post-op visits, mammogram, film consultation, cystoscopy. Two days in a row in January, I have three appointments each day. In Ann Arbor. But at least it's not six separate trips there.

Physically I'm fine. Emotionally, I'm up and down. I'm scared of such a long surgery, I'm afraid of dying during surgery, I'm afraid to tell my kids about the BRCA stuff, but I'm so excited to eliminate some risk and greatly reduce other risk. This is such a hard road.

So there you go. More than you wanted to know, more than I want to deal with. My reality.

CT Results

Yay for no spread of the cancer! I got the best voicemail from my urologist today:

"Everything looks pretty good. They see some post-op changes in the bladder which are normal after a cystoscopy and resecting that area. Otherwise, nothing that looks to be outside of the bladder or any other unusual findings so that's good news. Overall we're happy with how the CT looks. We'll see you for your resection in a couple of weeks. I hope you're doing okay. I'm thinking about you. Have a good one. Bye."

Music to my ears. <3