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.)

*****************************

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

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.

Tomorrow is the day

I have two doctor appointments tomorrow. At 9am, I meet with my urologist to get the pathology from my TURBT. At 10:30am, I meet with the new geneticist.

I am anxious. But as I think about what to type, I don't even know what I think any more.

I am fully expecting bad news from Dr. H. Bad news as in "You have bladder cancer." I think I'm even expecting really bad news, as in "You need your bladder out very soon." If I have to have my bladder removed, I am wondering if it will involve chemo at all. Some have chemo beforehand, some have it after. I'm wondering if it would result in a neobladder (part of your intestine is used to make a new bladder) or a stoma/urostomy (external bag that collects urine when you don't have a bladder). I'm wondering when any and/or all of those things would happen. I'm wondering how this will affect me working (two jobs, so not much down time). I'm wondering how it'll make me feel physically and emotionally. I'm wondering how it will affect me being able to attend my kids' events (football, cheer, back-to-school events). I'm wondering how it will affect my family.

I am hoping for a miracle. I am hoping for "We got everything out during the TURBT and it's a grade that hadn't spread." I am hoping for "We'll just keep an eye on things through ultrasound or cystoscopy."

At this point, I just want answers. I can handle anything. I have prepared my older two children for a cancer diagnosis. I am ready to fight. We just need to get moving.

I'm finding it hard to think about anything else. I keep unintentionally trying to read into things. My TURBT was quick and my recovery was easy compared to many of the stories I read online. Is that because it was easy to get out or is that because it was so bad, they didn't take it all out and figured it will come out when they remove the bladder? But I try to stop thinking about it because I won't have answers to those questions until tomorrow.

Tomorrow.

The day everything will change.

One way or another. Either I'll be celebrating a miracle or I'll be planning the biggest battle I've ever fought.

Tomorrow.

(As for the geneticist appointment, it just feels like an afterthought. I need to talk to her, mostly to ask about other risks with my mutation and about when my kids should be tested. I have no worries or hesitation about this appointment; it's just one to check off the to-do list in this BRCA journey.)

So much running through my head...

So we told the older two kids on Saturday what's going on. My second oldest, M, left for camp on Sunday so I needed to let her process it before she left. We told them pretty much everything about the bladder issue but didn't talk about the BRCA stuff yet. I told my younger two kids on Sunday. They were concerned, but that was quickly forgotten as they got excited that they were going to get to sleep over at my friend's house on Monday.

Because Monday was surgery day.

My appointment with the new geneticist was supposed to be yesterday. But I had to reschedule it due to surgery now being the same day. I rescheduled the geneticist for August 14 (fortunately for me, she had a cancellation).

So I had my TURBT yesterday.

My husband and his mom went with me. Everything went as well as I could have asked for. I cried less than I thought I would, my nurses were fantastic, my doctor was as awesome as expected, the surgery was supposed to take two hours but only took about 45 minutes. I came out of anesthesia easily. I didn't have to come home with a catheter. As soon as they took the catheter out, I needed to use the bathroom. I did and had no pain or blood. All really did go well.

Before the surgery, I asked Dr. H. when the pathology report would be back. She said it'd be a week so she'd see me in clinic on Tuesday. Since I have to be in Ann Arbor on Monday for the geneticist appointment, I asked if there's any way we can meet Monday instead. She literally pulled out her phone, looked at her calendar, and said "We'll make it happen." She is that amazing. This afternoon, I messaged her office through the hospital's online portal. I asked if a time had been scheduled for Monday yet. Twenty minutes later, I got this reply from her (directly from her, not someone in her office):

"Hi Deanna,

We are still working on it but will get back to you ASAP. Hope you're feeling ok. See you Monday (time TBD).

Lindsey"

She is simply wonderful. And I know that in her care, I will be okay.

But this is all still damn scary. I've told a few more people as they've asked questions. But now I'm feeling overwhelmed with all of the questions and the sorrow from people, so I'm starting to retreat. I think I'm more comfortable keeping things to myself for the most part. I've never been one to share much personal stuff and I don't think this is the time to start.

I've felt pretty good since my surgery. I haven't taken a pain med since I was in the hospital (by my choice). I have been urinating fine and have been eating. I have some pain today but it's bearable so it's okay. It hurts my back and my abdomen (where I'm assuming my bladder is located) to sit straight up for more than a few minutes. But it's bearable so it's okay.

I worked from home today and have the option to do that as long as I feel I need to. I'm going to try to work in my office tomorrow. Keeping up the norm, as my doctor recommended.

My head is a mess, or at least it feels that way to me. So much going on, so much to think about, so much I wish I could stop thinking about. In all of this, waiting is one of the hardest parts.

But now we wait, for six. long. days.

No surgery today. An update...

The cystoscopy almost didn't happen. I had to give a urine sample and it showed that I have a UTI. But Dr. H. gave me some Bactrim and went ahead with the cystoscopy anyway. I could hear them talking outside my door about how they needed to because of what the ultrasound showed.

I was able to watch the monitor during the cystoscopy. It's weird seeing inside your urethra and bladder. Things I never imagined I'd see. And there are two tumors. Also things I never imagined I'd have or see. I have to have the tumors removed and sent to pathology.

So, yeah... no surgery today. Dr. H. didn't want Dr. P. doing the oophorectomy at the same time as the removal of the tumors (TURBT). The oophorectomy requires inflating my abdomen with gas; the TURBT does not. In case I need a bigger surgery (such as having my bladder removed) soon, she doesn't want that being messed with for now. If I don't need my bladder removed, Dr. P. says we can do the oophorectomy three to four weeks after the TURBT.

And I'm having the TURBT on Monday.

Which means I'll likely have pathology back on the tumors by the end of next week.

I'm glad things are moving quickly, because I'll know for sure whether or not I have cancer and I'll know what the treatment plan is if I do and we can get started on that treatment plan. But it's all still really scary.

I have told a couple more people what's going on and am finding it hard but comforting. I have always known that I have awesome family and friends, and I love that I'm seeing it so strongly right now.

We haven't told the kids yet. I'm waiting for a call back today from the pre-op department with my surgery time. We'll tell the kids tomorrow. One of my daughters, M, leaves for camp on Sunday and I know she's going to be upset. We're telling J (age 17) and M (age 14) separately from L (age 11) and C (age 7) because of how we think they'll react. And then once we tell the kids, I'll be sending an email to some family members and friends who I want to know at this point. After pathology comes back, I'm sure I'll be sending an email to others who need to be filled in. Telling people any of this is one of the hardest parts. I appreciate the support but the sadness and pity gets tough and awkward.

So now we wait until Monday.

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.

Thanks a Lot, Google...

You know you've been doing a lot of internet research about cancer when the behavior-targeted paid ads online are for Cancer Treatment Center of America and the like.

All part of the new reality, I guess.

An Update

My appointment with Dr. Rizk (breast surgeon) went as I expected it to. She's on board with my plan (as best as I could sketch it out for her). She wants me to follow up with her after my appointments with the oncological gynecologist and the geneticist. So I'll likely be back to her in September.

After more drama (that I'll spare you from), I was able to reschedule my breast MRI. I go this Sunday, this time to Ann Arbor. I'm anxious again, and contemplating asking my doc to order something for me to calm my nerves, but I also just want to get it over with.

I learned today that the MRI alone is going to cost me over $2,000 out of pocket. That is almost my entire deductible. For that reason, I am seriously contemplating getting everything done this year. It would save me $2,500 next year. I'm not trying to be flip about it; just trying to be realistic about finances. I can't financially afford to do all of this, but I can't physically or emotionally/mentally afford to not get get it all done.

I learned today that another first cousin tested positive for the BRCA1 mutation. She's had one sister die of breast cancer that metastacized in her brain and she had one sister diagnosed with stage 2 breast cancer (though the second sister is finishing up treatment very soon). Just another example of why we need this testing and to be informed. I feel like my family is somewhat doomed. At least we have knowledge and are empowered to make decisions for ourselves.

So there ya go; that's what's going on right now. Now to (dreadfully) count down the days until Sunday...

One of my Worst Nightmares

Today I have my appointment with the surgeon who will do the mastectomy. This one feels like the "easier" one, with fewer questions, because it seems pretty simple. She just cuts them off. The plastic surgeon gets the hard (and long) part of the surgery. But I'm anxious as heck because my appointment is at the Cancer Center. Cancer is one of my biggest fears. I've watched too many family members and friends battle it and die from it. I'm doing all of this to avoid cancer (as much as possible and I have control over). Walking into that building and signing in for that appointment is going to be hard.

Other than that, this appointment feels like a formality to me. I won't schedule my mastectomy and reconstruction until after my appointment with the oncological gynecologist in June. But at least I'll get to learn how the surgery works and get to keep moving this process along.

After my plastic surgery appointment, I made a very special stop. I visited Joana's tree in Nichols Arboretum in Ann Arbor. Joana is the daughter of one of my best friends. Joana passed away 3.5 years ago after battling a brain tumor for about five years. Joana was one of the strongest, most cheerful, most loving, funniest, bravest people I'll ever know. Joana's motto was "Life is too short to be anything but happy." When Joana passed away, a tree in the Arb was dedicated to her. It symbolizes to me strength and bravery, just like Joana had. After my appointment, I visited Joana's tree, sat on the bench next to it, and spent some time thinking about all that's in my head right now. It was nice to have this perfect place to sort things out a bit. I'm hoping to stop by again today, probably before my appointment so I can clear my head before I sign in as "a patient of a cancer center."

Plastic Surgery Consultation: Check.

I had my first appointment in Ann Arbor today. It was with my plastic surgeon (PS). I was told I'd have 20 minutes with him, so I expected a relatively short appointment. It was not that way at all, and I'm so grateful.

First of all, this doctors' office, in spite of how busy it is and how many doctors practice there, runs incredibly smoothly. Right on time, so efficient, so kind, so wonderful.

The first person who came to see me was a nurse who said if I have any procedure done through the office, she'll be my personal contact the whole time. She gave me her card with her cell phone number on it.

Then my PS' nurse came in. She was also incredibly kind. Until she asked me to take off my top and bra and put the gown on with the open part facing front. LOL I know it's a necessity; it's still just awkward to me. She asked my permission to look at and handle my breasts. Oh, the fun. Not. I don't imagine I'll ever get used to that or comfortable with it. Not for me, but I don't get a choice. Anyway... She explained to me most of the procedural stuff and differences between different types of reconstruction. The two I'm considering are DIEP flap or expanders to implants.

Then my Aunt Kim, who works in the same office but for a different doctor, came in. It was great to see her and it eased a little of the anxiety I was having about the appointment.

My aunt left and then the doctor came in. He went over some of the procedural stuff too, checked out my breasts, asked me some questions to gauge where my head is at and what I'm thinking in regards to reconstruction and different types, and then went over a lot of the risks and benefits of the two procedures I'm considering. He spent almost an hour with me. I didn't have a ton of questions, as I thought I would, because he was so good in his explanations to me.

So, I can take as long as I want to make my decision. But I'm going to make it before my appointment with the oncological gynecologist in June. If I'm having an oophorectomy or hysterectomy, which I am strongly leaning toward and think the gyn will recommend, I believe I'll be having that surgery first. So I told my PS that I will know more about timing in early June.

The two options I'm considering are:

DIEP flap: in a nutshell, the PS would use my belly/abdominal fat to build new breasts under the skin the general surgeon leaves behind. Because of the size I am now and the size of my belly, I would definitely end up with a smaller breast size (which I desperately want). This surgery is 8-10 hours, sometimes longer since I'm having both done. The time in the hospital is 3-5 days. The recovery is about 6 weeks. You risk infection, necrosis of the skin (the breast skin dying), the blood vessels not working after being reconnected (meaning you might have to be rushed back into surgery), blood clots in the breast. You may need follow up surgeries (mostly outpatient) to tweak things (size, unevenness), fix things ("dog ears", among other fun). But those are all things that are threats early and once you get through that time, there really isn't any risk in the years ahead. It's your own fat, your own body, not a foreign substance. It's something you'll never have to have replaced and that won't be damanged like an implant could.

Expanders to implants: once the mastectomy is done, the PS would put expanders in my chest. After a short recovery time, you go to the PS once a week for "fills". The PS fills the expanders with silicone weekly, until you get to the size you want to be. Once you are there, you go in for another surgery to have the expanders removed and the implants put in. With the original surgery, you're only in the hospital overnight. Recovery is just a few weeks. But then it's the same with the follow up surgery. And there are risks of the implants leaking or moving. Implants don't last forever; I'd have to get them replaced a time or two in the future. But I could choose my exact size ahead of time. There isn't as much chance of necrosis.

It's a lot to think about. And before I started typing this out, I wasn't sure which way I wanted to go. But if I'm being honest with myself, I'm still leaning toward the DIEP flap. My fears? Being under anesthesia for the length of the initial surgery and that the surgery won't work (blood flow or dead skin issues). I don't like the idea of the long recovery, but I know that my employer will be flexible and I am hopeful that I can schedule this somewhat conveniently with my kids' school schedules.

I just don't know. I do know that I need to take time to figure it out and I also need to work on my overall physical health (lose weight). So it's time to get moving and thinking. Good thing that running is so good for thinking and clearing your head.

Next on the agenda is Friday's appointment with the general surgeon who will be doing my mastectomy. My PS says she's really nice; I am hoping so.

Update and Thoughts

It's been a while since I've had a chance to update here. My husband was in the hospital for five days and is still unable to get a shoe on his foot, let alone walk or work. We had to cancel our vacation. We've been to a ton of doctor appointments and gone for lab work and an ultrasound. He's still not doing well and is in constant pain. It's been crappy.

Back to the BRCA stuff. I was uncomfortable with my gynecologist's plan of (in)action. I asked lots of other people in the same boat I am what they thought and 100% said waiting is a mistake and to get a second opinion. I now have an appointment in Ann Arbor with a gynecologist who specializes in BRCA mutations. I took his first available appointment, which is in June. I had scheduled the ultrasound I asked my gyn for but am calling to cancel it. I am going to see what this other doc says. Even waiting until June, I feel better about this.

My appointments in Ann Arbor start next week. I am feeling good yet nervous about them. I am most curious about what the plastic surgeon recommends and about when the surgeon recommends I have the double mastectomy done. If the surgeon is comfortable waiting until next summer, that's my ideal due to short-term disability at work (if I have the surgery before April 2018, I won't get paid for my time off). If I have to have it sooner, I'd like to have it done this winter, while the kids are off of school for a couple of weeks.

I was approved by my insurance company to have my MRI at a different location. As soon as I start my period this month, that will get scheduled. This place was phenomenal on the phone and I feel as comfortable as possible in working with them. Now I just want to get it done and over with.

That's it for now. Some upcoming appointments, some waiting, and a little less anxiety for the time being.

Now I'm going to enjoy the day with my kiddos. Back to work for me and school for them on Monday, so we've got three days of spring break/vacation left to have fun and make memories. <3

Trade Ovarian Cancer for Heart Disease and Loss of Bone Density?

I had my appointment with my gynecologist this morning. I thought I'd end up with a couple of tests run today and I'd leave with a referral to a surgeon.

Nope.

My gyn is quite convinced that I'm "acting too strongly too quickly." She'll do whatever I want her to (and she can do an oophorectomy or hysterectomy without having to refer me to anyone). But she is very convinced that waiting 8 to 10 years for either of those is a better option for me. She said that either procedure will put me in some degree of early menopause. She said that means my body would age much quicker and that my chances for loss of bone density and of heart disease would be higher very quickly.

So basically, I would trade off the risk of ovarian cancer for the risk of heart disease and brittle bones.

I asked about monitoring for ovarian cancer in some way. She said she can order pelvic ultrasounds for me, yearly if I want them that often. For the time being, at least until my geneticist visit in August, that's what I'm going to do. I'm going to get my first ultrasound as soon as possible so I can see if I already have ovarian cancer. I'll talk to the geneticist. If my risk of ovarian cancer is too much for me to take, I'll have my gyn do the oophorectomy this year. If I decide I'm comfortable waiting, I'll get yearly ultrasounds until I'm much closer to natural menopause.

Add all of this to stuff I never thought I'd have to worry about and things I don't really feel like dealing with or talking about now. :(

The MRI...

... didn't get to happen.

To do a breast MRI, you have to lay on your stomach on this ramp thing that looks like what you'd see mechanics raise a car on to change its oil. Your boobs hang down in these holes. Your boobs can't be squished at all. Well, mine are large (as doctors seem to like telling me) and when they hang down in the MRI machine, they get squished. So they have to "build you up" by basically putting rolled up washcloths between your boobs. Which raises you higher in the air. Which raises me too high to fit into the MRI machine at the facility I was at.

So I called 10 (literally) more places to try to get an MRI this week and nobody has an appointment available. So now I have to wait until next month (since breast MRIs have to be done between days 7 and 14 of your menstrual cycle) and get it done somewhere else. But I also have to hope that my insurance company will provide another pre-authorization, since the existing one expires on April 18. My doctor's office is working on the insurance side of it for me.

Now I know what to expect when I *do* get to have the MRI, and I know I'll be at a facility that has a larger machine and won't be a problem for me.
'
And for the record, I'm sick of talking about and showing my boobs.

That is all.

It's MRI Day

I'm nervous as heck and feel sick to my stomach. I'm shaking. I'm extremely claustrophobic. I just wish this were done.

Hoping for a quick test and that I make it through without issue. And hoping for good results. It's crazy even to me that I'm more worried about the actual test than the results. I'm looking at the MRI as a necessary evil to check off of the list.

*sigh*

Relatable (Unfortunately)

I was recently welcomed into the BRCA Sisterhood Facebook group. If you're looking for support from women going through the same thing, you need to check it out. You have to be approved to join, but you'll understand and appreciate that once you are accepted to the group.

The very first post I read on that page was "Anyone have to start anti-anxiety meds after finding out about all this shit? I feel like I have mini panic attacks throughout the day worrying about what this mutation will do to me. Hoping it goes away after getting all the surgeries."

I don't think I've ever related to a total stranger's sentiment so strongly. And I wish I didn't this time. But seriously... I know I'm not, but I do feel like I'm going crazy. This stuff eats at you, all. the. time.

Ugh... A Little Taste of What's to Come

I had to take my husband to the ER this morning. He has a bad infection in his leg. He's since been admitted into the hospital and will be there at least 48 hours. He's going to be fine, but it's been a rough day.

When I told my kids what was happening and where Da is, two of them started crying. I took them to the hospital to see him. They were expecting the worst, even though I told them beforehand that he is only hooked up to an IV. Once they saw him, they felt better. But then the nurse came in to give him a shot, and my 7-year-old freaked a bit.

If they are worried about a leg infection with a 48-hour hospital stay, how will they react to major surgery with a longer hospital stay? If they can't handle seeing an IV line and a shot, how will they feel when they see me after surgery?

No bueno. This whole thing sucks.

Now to get my husband healthy so my family can leave for vacation in 12 days. We NEED this time away together.

Appointments and Indecision

I got the call I've been waiting for. I was able to schedule my consult with a breast surgeon in Ann Arbor. My appointment is about a month away. I'm good with that. We have a trip planned for spring break, which is the week before the appointment. At least the appointment is on the calendar and I have something fun to look forward to before it.

I then called the plastic surgeon's office and got an appointment for a consult there too. It's a couple of days before the other consult. I'm glad to have it scheduled; I truly think I have more questions for the plastic surgeon than for the breast surgeon, as reconstruction is where my indecision comes in. I am now leaning toward not getting any type of reconstruction. I know the Facebook page I am on freaked me out at first. But it doesn't now, and the option is actually seeming better to me. Maybe it's more about the bad stories I've read in the DIEP flap group that I'm part of online. I need to get facts and straight info from a plastic surgeon to be able to be completely confident in my decision. Whatever I choose will have long-lasting consequences (hopefully benefits).

So the countdown is on to lots of appointments. The first is about a week and a half away.

In the meantime, I'm going to try to relax (yeah, right) and enjoy my family and friends.

August

That's when the geneticist in Ann Arbor has an opening to see me. Freaking August.

I suppose the only good thing for me is that my conversation with the geneticist won't affect what I'm going to do. My questions for that visit center around my kids and what they should do in the future.

But seriously... do they not think I'll have one panic attack after another if I have to wait until August to get any info? Maybe the urgency is just in my head, but it's there and I don't think I can handle waiting until August to move ahead in some way in my care plan.

Kindness Makes Me Cry

I told someone recently that I feel like I've become bipolar in what I'm going through. I'm so up and down so much in a day (heck, in an hour).

I just emailed a friend who works at my church. I asked her to include me on the church prayer list. I didn't giver her details; I just told her that I'm battling some pretty tough health issues.

This was her reply, which made me cry:

"First of all, let me say that I am sorry that you are battling health issues. Know that without a doubt, I will be praying for you and I will ask for the ladies who do our prayer line to include you and I will also add you to the Book of Intentions. The names in the Book of Intentions are not read out loud, but during the Prayers of the Faithful we are asked to pray for all of the intentions included there.

I hope that the kids are doing well and will be of support for you as you have done so much for your family over the years. You are an awesome mom!!! Know that you are loved by so many and if I can do anything for you, a meal, a ride, anything, please don’t hesitate to ask."

It's funny how even someone being kind can make you cry. But her response was perfect; what I expected from her and then some. I'm so grateful for the kindness of others.

MRI is Scheduled

I will be having a breast MRI on March 27. I'm surprised it's so soon, but the doc said it'll need to be done before I meet with the surgeons in Ann Arbor. I don't have that referral yet, but once I get it, the doctor doesn't think it will take very long to get in.

Good Resource

I was just poking around online and found this blog. It seems like a really good resource to me, so I thought I'd share it with you. <3

https://theyarenottwinstheyaresisters.wordpress.com/

Just Be Held

My sister sent me a link to this song today. It's encouraging yet makes me cry. It's a beautiful song. <3

https://www.youtube.com/watch?v=tIZitK6_IMQ

Moving in (what's hopefully) the Right Direction

I didn't hear back from the geneticist's office today, so I called my doctor. I told her what I think I want to do. I cannot wait until June to get in with a geneticist and waste all of the time between now and then. I'm already on edge and the verge of tears all the time.

So... I have an appointment with my (local) gynecologist later this month. We'll talk about my results and her recommendation.

I am getting a referral to a breast surgeon and a plastic surgeon in Ann Arbor. I have to go there for the mastectomy with DIEP flap reconstruction, as nobody locally does that type of reconstruction. My doctor thinks it only requires about a 3-day hospital stay. That's not too long to be that far away.

I asked my doctor to order a breast MRI for me in May so that I can be monitored as much as possible. She's working on preauthorization from my insurance company and then will order it.

At least things are moving along now. Hopefully I'm choosing the right path for me. I'm worried that I'm moving too fast and making decisions too fast, but at the same time, I think I have to.

I am working on telling my brothers what's going on. Since my results mean that my dad is positive for the mutation, that means my brothers may be. I don't know what they know, so I want to make sure I tell them what I can. They each have kids too. Lots to think about.

Feeling a Little Calmer...

... though still anxious and scared.

I finally had time to sit and really talk about this with my husband. We work opposite schedules and life with four kids is crazy busy, so it took time to find time.

I think I know what I'm going to do. I think I'm going to do the oopherectomy (or hysterectomy), if a doctor recommends it based on my results. I have a feeling that I already have ovarian cancer (hopefully I'm wrong), so between that and my age, I want to get that taken care of first. Ideally, I'd like to do it this summer. I think I'll then have the mastectomy with DIEP flap reconstruction. That means they'd use my belly fat for reconstruction. It's more invasive and a longer recovery, but it's one surgery and done instead of surgery again later down the road. And I certainly have fat to spare. Ideally, I'd like to do that surgery next summer.

All of this hinges on talking to a doctor. If I don't hear back from the geneticist's office in Ann Arbor today, I'm going to call the doctor who ordered my mammo and gave me my genetic test results. I'm going to tell her my thoughts and ask what the next step is. I think I want to go with docs in Ann Arbor for everything, simply because there's no better hospital in the world than University of Michigan Hospital, in my opinion. But then I'd be further away for my family and friends to come see me and I'd have to travel further for my follow-ups. I'll decide that stuff after I talk to the local doctor.

If things take as long as it sounds like they will, I'm hoping they'll agree to do MRIs and mammos every six months until the mastectomy is done. I need the monitoring and reassurance in the meantime.

It's all still too much to think about rationally, but I'll feel a lot better when I have a plan, pick docs, and get moving.

Seriously?!

I haven't made a decision yet (want to wait until after I get more info from the new geneticist) but have been leaning toward the mastectomy.

I thought I'd do it without reconstruction. And then I joined a Facebook group for women who didn't have reconstruction and now I'm not sure I can handle that. It was so hard to read and imagine myself in that boat that I had to stop reading.

But I still thought I'd have the mastectomy. Maybe just with reconstruction instead. Heck... I hear they can use your belly fat to reconstruct. "Tummy tuck and boob job paid for by insurance." Sounds like a good thing in the middle of hell.

But I just read this article. http://www.citynews.ca/2017/03/03/gta-woman-develops-breast-cancer-despite-double-mastectomy/

I know the prophylactic double mastectomy doesn't mean you'll never develop breast cancer. But it lowers your chances dramatically. But then you don't get extra checks; just the yearly mammogram. So what if breast cancer develops quickly in the year between mammograms?

So maybe, like the woman in the article says, the mammograms and MRIs alternating every six months are better because they can keep a closer eye on you. But then what if cancer develops quickly in that six months and it's harder to treat?

I'm in a lose-lose situation. And I hate it. I wish the "right" decision were easier to determine.

Hits You Unexpectedly

I was working last night and Meghan Trainor's "I'm Going to Love You" came in. The chorus (which is repeated a LOT) is "Im going to love you like I'm going to lose you..." Made me cry.

I hate having this health stuff hang over my head. I really do feel like my body is betraying me and like I'm a ticking time bomb.

This is why I need a plan soon. I'm going to go crazy.

Randomness

I was driving home from work today and it just felt weird. My world hasn't stopped, but my focus has changed. Yet I look around me and nobody else has changed. It's a weird feeling.

I have to figure out when, and in some cases if, I should tell people what's going on. It's quite personal, but some people probably fall under "need to know." And my family and I could probably use all of the support we can get. As for telling my kids, I think I'm going to wait until I have a plan.

I am worried about my siblings, cousins, and kids. I wish they'd all get the genetic testing and make the best decision for them. I want them to be proactive and knowledgeable and empowered. I don't want them shocked with a drastic, scary diagnosis, especially before it's "too late" to do anything, as it has been in the past for some of my relatives.

I've been told that a lot of people with family history like mine don't get the genetic testing. They opt not to. I can't imagine knowing I am at risk for the mutation but not finding out. Both options are scary but at least one could be a good answer and allows you to make informed decisions that could make your life and your loved ones' lives much better.

I got to snuggle with my two youngest girls while watching a movie with them tonight. It was good for my heart.

I have a very busy day tomorrow and am glad for that. I have fun things planned and also have to work. Lots to keep me busy and maybe distract my mind for a while.

The Call

I got the call today. With the results of the genetic testing I had done two weeks ago. The doctor called to tell me that I tested positive for the BRCA1 mutation.

I held it together during the call, thanks to deep breathing and doing a lot more listening than talking.

And then I lost it after I hung up the phone.

I am scared. I do feel empowered with the knowledge, which is how I felt when I decided to have the testing done, but I am scared, which is also how I felt when I decided to have the testing done.

The plan now is to see a new geneticist (mine moved), get some more info, and then decide what to do.

At this time, I'm leaning toward the prophylactic double mastectomy, probably without reconstruction. But I don't know. I have a lot of questions. And the few friends I've asked for input have varying opinions and thoughts. I will feel much better about making a decision after I meet with the geneticist.

And I've also been told I'll need to consider an oophorectomy, as my chances for ovarian cancer are now considerably higher than normal as well.

So much to consider. Such big decisions to make.

Background

Breast cancer runs rampant in my dad's family. I've pretty much always known that I have several relatives who have had it and who have it now, but I didn't realize the full extent of the history and I didn't know about the ovarian cancer history in my family either.

Until yet another female cousin was diagnosed with breast cancer in her early thirties and a male cousin was diagnosed  in his mid-forties, within a very short time of each other. My fear started taking hold and my mortality stared me in the face.

So I made an appointment for a mammogram, worked my way into an appointment with a geneticist because of our family history, and got blood drawn for the genetic test about two weeks ago. This whole situation and process have made me feel both very empowered and afraid. But I'd rather know what's going on and be able to make decisions for myself than be shocked when I'm diagnosed with cancer and then be too overwhelmed and scared to make the best decisions for me.

The mammogram (my first, at 41 years old) came back clean. The blood test did not.

I have four kids. My positive result now means they have a 50% chance of having the mutation. Had I tested negative, they couldn't have the mutation. I am scared for them too. But I can't let myself be. My oldest is 17 and my youngest is 7 and I can't let myself live in fear for the next 40 years.

I need to get my thoughts down, I need a safe place to "talk", and I want to help others as they navigate this road. It's scary. But I'm not alone and neither are you.