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

CT today

Today is the day of my CT urogram. It's 1am and I haven't gone to bed yet. Partially because I'm making dessert for my son's football team for tonight's dinner, and partially because I'm a little anxious and can't just fall asleep. I'm not worried to have the test. I just hope and pray so much that the cancer hasn't spread at all. I believe that it hasn't. But the way my luck has gone medically this year, God only knows how it will go. I'm hoping He knows it will be good news.

Slight change in plan

My surgery that was scheduled for September 18 has been moved to the 25th. Gives me a little more time before going back under anesthesia, so I'm okay with that.

Making lemonade out of lemons...

I've had another setback in this. Due to doctors' schedules, coordinating two surgeons, and required wait time between two surgeries, I literally cannot get everything done this year. A cancellation won't fix it because  of the required wait time (even though they did lessen it for me from what it originally was) and the fact that the first date I'd be eligible for the biggest surgery would be December 29, when neither of the surgeons is doing surgeries due to the holidays.

So I've decided to focus on the positive. That last surgery is huge, risky, and long. It is on average a 12-hour surgery. The better health I'm in, the less risks there are to me and the easier recovery will be for me. So I'm going to focus on weight loss and getting into shape between now and then. Then again, I also have two surgeries between now and then, so I'll focus on healing well too. And truly, this puts at their ideal wait time between surgeries, so it's probably better for me anyway.

As for the bladder cancer, I'm feeling fine. Two weeks until my CT urogram and then three days after that until my repeat TURBT. Still hoping and praying that they find nothing.

And hey... I should be healed enough that week to go to my son's football game on take him on a college visit at the end of the week. Life goes on (because it has to).

Stupid BRCA Mutations

Just feeling emotional and sad today. 

One of my coworkers just got the news yesterday that she's positive for the BRCA2 mutation. A friend of mine is waiting for her appointment with a geneticist to schedule her testing, as her mom is positive for the BRCA2 mutation. 

Prior to Angelina Jolie's experience, I had never heard of BRCA mutations. Prior to finding out that's what made cancer so rampant in my dad's family, I had no clue I was at risk for this. Prior to my BRCA1 mutation diagnosis, I had no clue anyone in "my circle" was affected by it. Now I know that many of my relatives are positive, some of my husband's cousins are positive (it runs on the other side of the family so my kids don't have a double whammy), and some of my friends are positive or at risk. 

And it just makes me sick. Sick to my stomach, sick in my heart. I'm so glad we have the chance to find out about the mutation before it's too late, but I wish we didn't have to deal with this. 

Life is really unfair sometimes.

The Diagnosis and Updates

Caught up in life, I haven't posted in a while. The good news is that there's good news. :)

I was officially diagnosed with low-grade papillary carcinoma. So yes, I have bladder cancer. But the doctor thinks she got it all out during the TURBT. Because of an "unusual inverted growth pattern", she is planning to do a repeat TURBT. If there is no regrowth then, we'll move on to monitoring endoscopically in the office (through cystoscopies, I assume) as long as need be. In her words "we'll be seeing a lot of each other for a long time." I'm okay with that. The reassurances will be good, as bladder cancer is one that often reoccurs.

Dr. H. said she expected from the beginning that she'd have bad news for me at this point. She really thought it was much worse, as did I. I cried when she gave me my diagnosis, but they were 100% tears of relief. I was prepared to be told I have cancer (I knew it in my heart and my head); the actual status of my cancer was a complete relief. I was prepared for and expecting the worst.

I am scheduled for a CT urogram (to see if the cancer has spread at all) on September 15 and the repeat TURBT on September 18.

Dr. H.'s scheduler initially wanted to do both the CT urogram and TURBT on October 16. I asked if we can do it earlier due to the other surgeries (oophorectomy and mastectomy with reconstruction) I hope to get done this year. I got the call today that everything was able to be moved up a month. Dr. H. is incredible and understanding.

We did tell the kids I have cancer. We apparently prepared them well, as literally none of them cried when I told them. I had good news and a solid plan to share, so they are basically just supportive and relieved. I'm so grateful for that.

So on we go. A little peace until September 15.

I have a message into Dr. P.'s office, asking him to call me. I'm hoping he'll be willing to let me get on his schedule for October 13 for my oophorectomy. And then I'm hoping for my mastectomy and reconstruction between November 24 and December 1. Getting it all done this year will be a HUGE financial relief and not waiting and worrying longer will be a huge emotional/mental relief.