Derailed and Pretty Devastated

I had my pre-op appointments on July 20. I had abdominal and pelvic ultrasounds, and then I had a general physical and bloodwork. I was also asked to join a research study regarding hormones from birth control and their potential in helping to delay or stop a woman from ever getting ovarian cancer. Of course I joined the study. And all seemed to go well that day.

Until I was on my way home.

As I was stuck in traffic while driving home, I got a call from Dr. P. (onc gyn). He informed me that a 1.5" mass/tumor had been found in my bladder. It is believed, though not yet confirmed, to be bladder cancer. He referred me to an oncological urologist (Dr. H.). He let me know that at this point, the tumor is priority. I still have surgery scheduled with him on August 4, but that may not happen, depending on what happens with Dr. H. and the tumor.

I have an appointment for a cystoscopy in Dr. H.'s clinic in Livonia tomorrow. This is done with a camera in your urethra. This will give her a good look at what's going on. She said that we'll most likely do surgery next week to scrape out the tumor. It will then be sent to pathology and we'll go from there. Dr. H. also believes it is likely bladder cancer. If you're keeping track, the radiologist believes it is too. So yeah, I most likely have cancer.

And I am scared and mad.

I had prepared myself for breast cancer and ovarian cancer as much as I could. No other type of cancer even crossed my mind. This is so from left field.

I have had some symptoms, but they're the same symptoms that made me think I may actually have ovarian cancer (some symptoms can indicate either of those cancers or completely different things). They're also the symptoms that have had me thinking that I'm starting to go into the early stages of menopause. So I have been brushing the symptoms off as those things, knowing I was either taking care of it already (ovarian cancer with my oophorectomy) or just going to have to deal with it as part of life (early menopause).

As mentioned, I'm still scheduled for my oophorectomy on the 4th. I'm truly prepared to beg Dr. H. to remove the tumor in the same surgery. Here's the thing: I might not be allowed to have two surgeries close together but would be allowed to at the same time. If Dr. H. decides to do surgery early next week, I may not be allowed to have surgery on Friday. Or if the pathology comes back showing that I do indeed have cancer, treatment for that may mean I can't have the oophorectomy until after that treatment is done. And that could be a short time or a long time. If it's a long time, I'm going to be scared to death constantly that ovarian cancer has developed and is unknown and untreated. I think my anxiety would be ridiculously overwhelming if that were the case. I'm already anxious about it.

So tomorrow is a big day. And I'm scared about it. My husband is going with me. We'll get through this. We have to.

I finally told my husband's parents what's going on; all of it. And while my sister was already aware of the BRCA1 stuff, I told her about the tumor too. Those were two of the hardest conversations I've ever had. Soon we'll have to tell my kids what's going on. That will likely be the hardest conversation I've ever had and likely ever will have.

Wish me luck. Pray. Whatever you do that makes good things happen, I'll take it.

Onward

And we have progress.

My appointment with the most amazing BRCA-specialist oncological gynecologist ever could not have gone better. I know I'm doing the right thing and am in the best of hands. Dr. Pearlman is literally one of the pioneers in BRCA detection and treatment. He was the doctor of the first family in which the BRCA1 mutation was discovered. He literally writes the national recommendations on what to do for this gene mutation treatment. He used to work side by side with Dr. Francis Collins, leader of the Human Genome Project and current head of the NIH. Good hands, people, miracle hands.

So my BSO is scheduled for August 4. Recovery *should* only be a week. I got to pick the date. I have it scheduled at a time that still allowed us to take our summer vacation, still pick my daughter up from camp and watch her orchestra perform at camp, and heal in time to go to the fundraiser walk to Joana's scholarship and not miss any of Josh's football games or the games Meghan will be cheering at. I know things could go awry, but they likely won't and this schedule works great for my family :)

It's still surgery, so I'm still nervous, but I don't have even an ounce of doubt that it's the right thing to do and I know that I couldn't be in better hands.

Soon, likely early next week, I'll call both my breast surgeon and plastic surgeon again to talk about scheduling my PBMX and (likely) DIEP flap reconstruction. I'll have those procedures after the BSO. If the schedule works out to my preference, I'll have the PBMX yet this year so I don't have to pay another year of my (stupid high) deductible. But I may decide to wait until spring so I get paid for my time off of work. Decisions I'll make later (but soon).

Now on to my personal mission to lose as much weight as safely possible before August 4.

Today's the day

My appointment with the oncological gynecologist is this afternoon. And my anxiety is pretty high about it.

I want to go. I've heard great things about this doctor (two of my husband's cousins have gone to him and had him do their oophorectomies, both being BRCA1+). He specializes in BRCA mutations.

And I'm scared too. I finally know, thanks to my MRI, that I don't have breast cancer (yet). But I don't know that about ovarian cancer. And ovarian cancer is harder to "monitor for" and harder to treat if you do have it.

So today, I'm praying that I don't have ovarian cancer and that the doc has a recommendation (oophorectomy or hysterectomy) and that we can get it scheduled.

My sister is going to my appointment with me today. I have very mixed feelings about this. It's a gyn visit, which is always best attended alone in my mind, BUT... I may get bad news today. And my sister is a busy person who I don't get to see often. So I feel like the fact that she is available to go and asked me if she can go with me means that maybe she's meant to be there today. Maybe there's a reason it's working out that way.

So yeah. Back to anxiety and fear. And hope and planning.

This journey is no fun at all.

Nightmares

I thought this would be a quiet time. I don't have another appointment related to this BRCA1+ nonsense until June 22. I was looking forward to being able to just "be" for a while.

But I've been having nightmares.

I haven't had a nightmare in a really long time. But as of last week, they're back. All very specifically related to this whole process, as the nightmares feature the surgery for the mastectomy and reconstruction. Last night's nightmare literally made me hyperventilate and sob. I woke up crying hard and having trouble breathing.

Even when you think it's not on your mind, it is. And it's horrible.

MRI Results

The MRI tech told me that my results would show up in my online health portal within two business days. That time frame expired yesterday and I could not keep waiting (it's mentally draining!). I called Radiology today. They offered to fax my results to me, since the report had been read.

Findings:
There is minimal fibroglandular tissue and minimal background enhancement. No suspicious enhancement to suggest malignancy.

Impression:
1. Negative breast MRI. BI-RADS Category 1. Recommend next adjunct screening breast MRI in 12 months.

So it's clear! They recommend I test again in 12 months. That will be the plan if surgery isn't scheduled by then, so it works for me.

I can breathe for a while now.

Next appointment: June 22 with my oncological gynecologist. I am pretty certain that I will leave that appointment with a test or two scheduled (to see if I already have ovarian cancer) and possibly with a surgery date.

Drumming Woodpeckers, Jackhammers, and Tornado Sirens...

... That's what it sounds like inside the MRI "tube".

I had my breast MRI on Sunday. I was very anxious, as I am extremely claustrophobic. I've had a MRI on my knee in the past (long ago), but for that, my whole body wasn't in the tube. This time it was. I didn't ask my doctor for anxiety meds because I drove myself (an hour and a half each way) to the MRI and I was afraid of not being able to drive if I was "too relaxed." On the way to my appointment, I tried building myself up and talking my anxiety down. It worked a bit, until I made myself cry when I reminded myself that I was doing this in large part for my kids and our future.

It took them a couple of times to get the IV in, but then it was in fine. When I got into the MRI room, two techs were there to work with me. One helped get my gown positioned for the test while one put ear plugs in my ears (because it gets soooo loud). They had my lay down on the table. For a breast MRI, you're face down. Your arms are positioned in front of you, next to your face and almost like you're in the position to fly. Your breasts go in these holes, your face rests on what feels like a snorkeling mask (though others relate it to a massage table, which I've never experienced). There are two mirrors positioned so that you can see in the room a bit rather than just staring at the floor or part of the table. The techs put a set of ear muffs over my ears (yes, even with the ear plugs in because it gets soooo loud). They put a foam wedge of sorts under my legs to angle them for comfort. They then push the table you're laying on into the tube.

The techs talk to you as the exam is getting ready to start. Then it just gets really loud for a while. There were eight scans total. The table moved for some (which they warned me about before it started moving). I was anxious but knew that I needed to find a way to get through this. I decided to think of the drumming and jackhammering sounds as a music beat and was kind of humming along. I went through my to-do list for the upcoming week in my head. I tried to fall asleep. I started to snooze and then came the tornado siren sounds. Right in my ear. Made me jump a bit (because I was just about asleep LOL). Next thing I know, they told me it was time for the contrast dye to be injected into my IV. It was a weird sensation, warm from head to toe inside my body, made me feel like I peed my pants (though I didn't LOL). The tech tells me "two scans and eight minutes left... you're almost done." . I knew then that I could make it through the rest. Then she tells me "one to go, just three minutes." I tried counting down from 180. Then it was done.

After your MRI, you will have a funky taste in your mouth from the contrast dye. Be prepared. It even made animal crackers taste nasty. LOL

I was quite worked up in my mind before this exam. I was anticipating one of my worst nightmares. It wasn't easy, but it was way easier than I anticipated. So if you're claustrophobic and worried about an upcoming breast MRI, I promise that you can do it. I never thought I'd be able to, but I was. Oh, and make your appointment somewhere with a large aperture MRI machine (the one I was in was 70cm bore). It's much less claustrophobia-inducing when the sides don't feel like they're touching your skin.

Take Two

I'm headed to Ann Arbor today for my second attempt at getting g a breast MRI done. I am confident that it will get done today, but I'm still anxious about it. I hope I have a patient, soothing, female nurse. Bonus if she'll actually literally hold my hand during the procedure. (joking, not joking)

When it's done, I get to go spend the rest of the day with my awesome family. I think I'm going to hit the gym tonight too.