Two weeks to go

My prophylactic double mastectomy with immediate DIEP flap reconstruction is two weeks from today.

Two. Weeks. From. Today.

I am heading to the hospital a day early to get marked up by my plastic surgeon. So that's less than two weeks away.

I am starting to feel anxious about it. Not really worried, per se, but anxious about the surgery in general. I just want to get it done so I can heal and move on. I want to see that my kids are okay and that I am okay. I want to start walking and driving again. I want to get back into being able to go to my kids' extra curricular things. I want to not miss any, which can't happen since one is the night of my surgery, so I want to heal and get back to living life.

I've made lists: things I need to take to the hospital, a 2-week meal plan of easy but still somewhat healthy things my family can cook, a grocery list to go with said meal plan, non-food things I need to make sure we're stocked up on before I'm laid up for a bit (or at least not able to go shop for easily). I have a to-do list at work to make sure nothing is undone when I leave and to make sure someone can take care of the basics for the (hopefully) few days I'll be in the hospital.

The next thing I want to get done is to make a calendar of what needs to be done daily (school drop-offs and pick-ups, practices, performances, games, religion class, doctor appointments) so that we can make sure we don't miss anything important.

I'm feeling more and more ready, but also more and more anxious. This two weeks can't pass fast enough, yet it's also coming way too fast.

And I've gotta say... one of my biggest frustrations right now is clothing. I need some new clothes because I've been losing weight but I have no clue what size to buy because so much can change after this surgery. I literally can't buy anything without it being a potential waste of money. Can't buy pants, shirts, bras (I'm going from a way-too-big size to a full B or small C cup, by choice), or underwear. And it's frustrating, because I don't even know what I'll need to come home from the hospital in. I honestly think I'll be coming home in pajamas.

Spreading the Word

Surgery date is quickly approaching. More and more people have asked questions and have heard bits and pieces, so I decided to make what I'm going through "public." I posted the following on Facebook yesterday. The response has been very kind. I'm sharing this with you in case you want to take the same step and need some inspiration or encouragement on what to say. <3

___________________

This may be a long one, but I promised an explanation, so...

We just got home from a wonderful family weekend up north. Between birthday and Christmas gifts, most of the trip was covered, so yay.🙂 The timing of the trip was tough with our busy schedule, but it was necessary because...

In three weeks, I’ll be having surgery that will keep me home bound for a (hopefully little) while. The surgery is one that will greatly reduce my risk of developing a cancer that has taken many of my family members and that several are fighting right now. All because...

I found out in March that I have a gene mutation that greatly increases my risk of developing breast and ovarian cancer. If you’re female and don’t have this gene mutation, your chance of developing breast cancer is 12%. My chance is 85%. Your chance of developing ovarian cancer is .01%. Mine, until preventive surgery I had two months ago, was 50% (and now my chance is 0%).

I want to be as healthy as I can and live as long as I can. I want to take care of my kids, not make them take care of me. I want to be there for and with my family and friends. When I have a chance to eliminate or greatly reduce the chance of developing a terminal illness that I have a very good chance of developing, I’m going to do it. I have watched family members of mine fight a lot of cancer. Some are in remission, some are still fighting, and some are rooting me on from Heaven. I want to make educated decisions with the help of my amazing doctors and I want to fight this cruddy genetic hand I’ve been dealt.

And while I’m talking health stuff and telling some of my “secrets”, I should tell you this too. Along the health road I described above, I was diagnosed with bladder cancer. I am so fortunate, though! The cancer was found very early (it wouldn’t have been if not for a pre-op appointment for the genetic mess), treatment has worked so far, I have the best oncological urologist ever, and the family and friends I’ve told have been overly kind and supportive. At this time, there is no evidence of cancer in my body and we can forge on ahead in dealing with the other stuff.

I tell you all of this for several reasons. Sometimes it really presses on my heart and mind to talk about the road I’ve been traveling. I have good days and bad days. Physically things are fine, really. Emotionally can get a bit rough at times. If your family has a significant history of breast and/or ovarian cancer, I want you to get tested for the mutation. If you’re related to me through my dad’s family, I want you to get tested for the mutation. If you see me after my next surgery, I’d love a hug and a smile rather than to be stared at (there will be some physical changes as part of this next surgery). Words of encouragement for my husband and kids would be awesome, as this journey is one they’re walking with me.

Was this all “too much information” to share on the Internet? Possibly, and I’m sure some of you think “definitely.” But if I’m Facebook friends with you, it’s because I want to be and because I care about you. I don’t get to see all of you in person. I haven’t seen some of you in years. But selfishly, I want your prayers and positive thoughts. And if you were going through a rough spot in life, I’d want to know so I could pray for you too.

So there you go. Now go hug your family, thank God for your health, and enjoy your evening. I plan to. 

An update

Tuesday was weird. Due to the holidays and lack of communication on the part of the hospital system, my first two appointments were canceled... AFTER I got to Ann Arbor at 8:30am. So my first (and only) appointment wasn't until 1:45pm. I got a gas card and free lunch (which I was able to share with a stranger in front of me in line at Subway) out of it. And I made a new friend whom I admire greatly and genuinely loved getting to know a bit (Hi, Crystal!).

The first appointment (a radiologist reading my mammogram from 2016) was completely canceled because it's an unnecessary appointment. The second appointment (with my breast surgeon) was rescheduled for this coming Monday. The third appointment was my cystoscopy. Other than getting locked in the procedure room (which was actually fine and turned out funny), it went well. Dr. H. and I didn't see any tumors on the screen but we did see a raised spot. While she didn't think it's cancer, she decided to biopsy it to make sure. Let me tell you... being awake for, seeing (on the screen and watching your doctor as she uses the forceps to get the tissues samples), and feeling (a strong tug but no pain since I was numbed first) a bladder biopsy is funky. Kind of neat though. So she sent the tissue samples and a urine sample off to pathology and said she'd call me with results. Dr. H. also said she's going to come visit me when I'm in the hospital for my surgeries next month. She's just a wonderful person. <3

Wednesday was good. First appointment was with my plastic surgeon. Other than him questioning if I was making the right choice for me because my reasoning is so different than most people's, all went well. I got to see, talk to, and hug my aunt as well (she's a nurse for one of the other docs in the practice). Always a good thing. <3 Dr. K. and I decided that I'm going to go the afternoon before surgery to get marked up for surgery. Brian and I will stay at MedInn in the hospital the night before surgery, which we hadn't intended to do. It's good, though, as we'd otherwise have to leave home at 4am on Friday anyway. I'm all set with Dr. K. until then.

I asked him lots of questions, most of which came from things I’ve read in the DIEP flap Facebook group that I'm part of. I thought I’d share his answers with you. As always, different doctors have different thoughts on things and not everyone does everything the same; these are my doctor’s answers and your doctor’s may differ.
-------
- what can I do to promote healing?
Protein and follow the restrictions 
- what can I do to avoid issues?
Follow restrictions 
- how long is surgery?
6-8 hours. My doc doesn’t do much with shaping during a PBMX because it’s safer to not be under anesthesia for that long. His primary focus is to get two working flaps.
- how long in hospital?
3-5 days 
- how long will I have drains?
An average of two weeks, will have 4 drains 
- anything I can do to affect getting them out earlier?
Not really. They’re looking for less than 30 CCs for two days
- how long til I can drive?
3-4 weeks (off of pain meds and ease/comfort of movement)
- bathing?
Shower before you leave hospital. Can’t soak in a tub until drains are out
- things I should have at home?
Nothing specific from their perspective 
- things I should have at hospital
Nothing specific from their perspective 
- what’s provided for me for afterward?
They’ll order any equipment they feel is necessary for home for me before I leave (such as walker, shower chair, etc.). They’ll order home care if they feel it’s necessary. They do not have patients wear binders.
- things to watch out for
Fevers, chills, redness, puss drainage
- icu after surgery?
No. Docs make this decision based on the hospital/wing and its nurses’ ability and availability to check on patients at least every hour for the first 24-48 hours.
- work restrictions afterward
No lifting over 5 pounds for at least a month 
- more pre-op appointments?
No others. He marks people up the morning of surgery.
- how often seen afterward?
2 weeks, 1 month, 3 months, usually, then depends on your personal situation/progress.

Next appointment was with a PA for pre-op. Vitals, general questions, reviewing the procedure and its risks (not fun to hear), going over instructions for the day before and day of to prep for surgery, bloodwork. All went well. The last appointment was a CT (with contrast) of my abdomen and aorta. CTs are never fun but they're not horrible. As I was getting ready to change into scrubs for the procedure, I looked in the full-length mirror (which I never do, purposely LOL). I felt like I was having a "skinny" (for me, anway...) day. It was a good feeling. :) The CT went fine. I'll get those results next week as well.

On my way home from the appointments, Dr. H. called me. She had accidentally ordered my biopsy results "Rush" so she had the results already. As I told her, there are certainly worse mistakes she could make. I was grateful for quick results. :) So... the raised spot isn't cancer. It's a "papillary urothelial neoplasm of malignant potential." Meaning it could become cancerous. As it's "not red and angy", we're not going to worry about it for the time being. We're going to keep an eye on it. My next cystoscopy is in April (going on that every-three-months thing for about a year, we think).

I got a call yesterday to tell me that my mammogram came back clean. :)

So that's where we are for now. I have an appointment Monday morning and I think I don't go back until February 1 to be marked up for my February 2 surgery.

Another note, one which makes me very happy... one of my cousins texted me yesterday to ask some questions about the pre-appointment paperwork for the geneticist. Her doctor finally gave her the referral and she is getting ready to make that appointment. She's been trying to do this for a long time and she NEEDS to get this moving. I'm so incredibly glad and relieved that she is finally on the path. Her mom died of breast cancer and her sister has it. She already knows she wants the preventive surgeries. She needs to get things rolling. I love her too much to lose her unnecessarily.

Not where I ever imagined I'd be spending a day

I have three appointments at the Cancer Center in Ann Arbor today. Had to be here at 8:30am and the last one should end around 2:45pm. I'll be here for about six hours today. I never imagined I'd be spending an entire day in a cancer center, yet here I am. The employees here are very nice, and other patients are kind and quick to smile. At least there's that, because it's still a cancer center.

My appointments today are with radiology (to read a mammogram and determine if more images are needed), with my breast surgeon (I believe it's the last time I'll be seeing her before surgery), and with my urologist.

Surgery... it's one month from today. While I'm excited to get it done and greatly reduce my risk of breast cancer, I'm still very anxious about the surgery. It's a scary one.

My urologist visit today... it's my first post-op cystoscopy. It's where I find out if there's any cancer in my bladder right now. I'm hoping, of course, for the all-clear. I know, though, that I won't stop worrying even getting that news. In the six weeks between my two TURBTs last year, a tiny tumor grew, or it was missed the first time and only found with the Cysview. So how do I know that a tiny tumor won't be missed today? Or won't regrow in the three months before my next cystoscopy?

A couple of people have mentioned to me that finding a tumor today would put everything off-track for my surgery in February. I said it won't. Either Dr. H. can take out the tumor at the same time as my mastectomies and reconstruction, or we'll wait until after those surgeries to do another TURBT.

Tomorrow, I have three more appointments, although two of those are at Domino's Farms and the last is at East Ann Arbor. Those appointments consist of a pre-op visit with my plastic surgeon, a CT of my abdomen and aorta, and my usual pre-op visit (vitals, etc.).

And then I believe I'm done with appointments until surgery. Or so I think and hope.

This life... one I never imagined I'd be living. I'm going to live it as long and healthily as I can.

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.