Another update

You take the good, you take the bad...

My appointment today went okay. It actually probably classifies as having gone well, but I'm not feeling that right now.

My breasts apparently look great. They're healing perfectly. We're going to keep letting them do their thing. This is good because they're the part of this surgery that has the most potential to go wrong.

My abdominal wound has gotten bigger. What you can see isn't bigger, but the wound is bigger inside. I can't even describe how big it is. I know it took a whole roll of gauzed (soaked in saline) to pack today.

Yup, Dr. K. changed my wound care regimen. It has to be packed with gauze that's soaked with saline twice a day. You use what's basically a really long wooden q-tip to pack the saline into the wound. I was referred to a visiting nurse to have this done. They're supposed to start tomorrow.

I've been told that abdominal incisions opening is pretty common, particularly where mine is. And that it will heal itself. 10 days was mentioned today; I will be super happy if that's all it takes.

This open wound is a speed bump I didn't anticipate. And I'm frustrated that I am having to deal with this. BUT... None of the docs or nurses seem worried (yes, they're keeping a close eye on the wound but they keep telling me it's common and looks clean and IT WILL be okay). So I need to not worry too. I need to let the visiting nurse do her job and I need to just heal.

I go back to Ann Arbor in two weeks for a follow up visit. I'm very much hoping the wound is healed by then.

One of the residents and my plastic surgeon both mentioned today that I'd need scar revision but that it can be done when we do phase two of the breast reconstruction. (Total side note... my favorite resident from my time in the hospital came in to see me today. She heard I was there and dealing with an open wound. She came in to look at it, tell me she's sorry I have to go through this, and to assure me that it looks good and it will heal. So kind.) I haven't decided yet. That's a long time ahead (about three months). I'm not worried about scars or how I look; I just want to heal and never get cancer again.

Yeah, cancer again. Today, as I looked at the list of my upcoming appointments at U of M, I got sad and frustrated. Probably didn't help the mood I'm already in. I have five appointments scheduled, with one of them being my next cystoscopy in April. I wonder if my abdominal wound will even be healed by then. I wonder what Dr. H. will think when she sees my mess of an abdomen. I wonder what the cystoscopy will show about the urothelial neoplasm of malignant potential we saw last time. I don't want to have to deal with another TURBT (bladder surgery) right now. One thing at a time.

And so I pray.

Speedbumps

Today is 24 days since surgery. It's not been an easy road.

At my appointment on the 13th, I got one drain out. Last night (well, at 3am today), one of my drains fell out on its own. The good thing is that its output was low enough that it was going to come out tomorrow anyway, so it's all good. But it sure surprised me when it happened. So I have two drains left. One more will come out tomorrow, due to low output. The last one is still pulling quite a bit so it will not be coming out tomorrow.

Last Friday, I woke up at 2:30am to an opening in my stomach incision. I knew enough not to freak out, but we did have to go to Ann Arbor to my plastic surgeon's office. He wasn't there so I saw one of his PAs. Kristina was very nice. She assured me that it's rather common, that it's going to be okay. She said my opening looks really clean. She put me on antibiotics anyway, just in case I develop an infection. She packed my wound and showed me how to, because I now get to pack it twice a day. One of the most gross things I've ever done, but I'll do it if it means faster healing.

I am being soooo lazy. I barely move off of our couch that has a built-in recliner. I sit in it to work on my computer all day and I recline it slightly to sleep at night. I get up like three times a day. Don't worry; I do exercise my legs throughout the day.

So... I go back to see my plastic surgeon tomorrow. I plan to ask him about the plan for the open wound. I plan to ask him how long he'll allow drains to stay in. I understand their importance so in that respect I'm not in a hurry to get them out, but I hate them, so I want them out. Most of all, I'm hoping they see some improvement in the open wound so I know I'm doing it right.

That's it for now. I'll update after tomorrow's visit.

Things

So, I've been home just over a week now. Things go really well at times and just kind of "meh" at times. Today's not an awesome day, but those days are going to happen every now and again.

My followup appointment with my plastic surgeon went pretty well. I guess really, it went well with the exception of my disappointment in only getting on drain out. The doctor is happy and says things are going exactly as they should be. I go back to see him in two weeks. If any of my drains are ready to come out prior to that, I can call to make a nurse appointment to get that taken care of.

Me? I'm just tired. Tired of drains (the feel of having them in, the stripping and measuring three times per day, the fact that two seem to be going up instead of down right now). Tired of not being able to take a shower (I have a bandage from the drain removal that can't get wet). Tired of not being able to wear regular clothes. Tired of not being able to drive. Tired of not being able to take care of my family like I usually do.

But I'm also grateful. Still grateful that I had the opportunity to take control of something in my life and do this. To do something that should keep me healthier for longer with my family.

And so I'll put my feet up, try to get these drains out sooner rather than later, and just keep on healing.

Hello from the other side

Surgery (phase 1) has come and gone. It was a week ago yesterday. Things are going well and I thought it's time to update here.

We headed to A2 the day before surgery so that Dr. K. could mark me up. We'd have had to leave home at 3:30am on Friday anyway, even earlier if the weather was bad, so going the night before worked well. Dr. K. used a purple Sharpie to draw his masterpiece and then went over the whole thing with a black permanent marker. Can't say that I blame him; I had to take two showers between then and checking in, so we needed to make sure it stayed on. A week later, though, and I still have marker all over my body. LOL

We went out to a delicious dinner Thursday evening. I knew my appetite would change for a while after surgery, so I very much enjoyed my "last supper" (as I kept referring to in my head LOL).

I had to take a shower with special soap before bed and again in the morning. And then I opted to wear pajamas and slippers to check in at 5pm. I knew they were what I'd be wearing home so why not make it easier on myself. After surgery tip: wear soft, loose pants that can ride low (under the hip drain sites) and a soft, oversized (literally two sizes bigger than you usually wear) top that buttons completely in front. Aunt Kim gave me the perfect pair of pajamas as a pre-surgery gift. :)

Pre-op was the same as usual. Lots of docs, residents, anesthesiologists, and nurses came to visit me. I remember last talking to my nurse about how it was time to head to the OR and the next thing I knew, I was waking up in recovery.

When I woke up, I was taken to my private room on the plastics/flaps/ENT floor. On this floor, there is staff to check you as often as needed. For my surgery, that meant every hour for the first two days, every two hours for the next day, and then every four hours the last day.

I woke up with a Bair Hugger blanket wrapped over my chest. It was set at 109.4 degrees. I had to wear that from after surgery on Friday until Monday morning. I kept spiking a fever in the middle of the night. Not hard to do when you have this super hot blanket wrapped around you.

When I woke up, I also found that I had two wires coming out of my chest and connected to a machine that was in my bed. This was the Doppler. Each wire was sewn and stapled somehow to me so that they could monitor the blood flow in my flaps (new breasts). This was connected until discharge morning, and the sound was very reassuring to me (I could tell at all times that things sounded just as good as they did in the OR).

I was connected to a pain pump as well. Now. this part, please remember, everyone is different. I, personally, didn't use it at all or take any pain meds. I haven't since I got out of surgery and only came home with scripts for Tylenol and aspirin. I was given Tylenol once daily for three days for my fever, I take one aspirin daily (for a month going forward) to again help with blood flow. But I haven't taken anything else. At this point, I don't anticipate I'll need to because it should just continue to get better. This isn't to say everything was roses. I was very stiff and sore. But to me, being sore and being in pain are two different things. If I can tolerate the situation without meds, that is always my preference. They left the pain pump hooked up for three days and then just unhooked it since I never used it. I am tired of hearing how "amazing" I am for not taking pain meds. Again, everyone is different. A healthy recovery is most important and being pain free is very helpful in recovery.

In the hospital and now, I cannot have caffeine, chocolate, or nicotene. Chocolate has long made my belly sick anyway, so I really don't eat it often. I don't drink coffee or pop, and I don't smoke, so these restrictions don't cause an issue for me.

I got to get into a chair on Saturday and got to take walks starting on Sunday. My kids came up on Saturday to see me (they stayed the night in the hotel in the hospital). They got to go for a walk with me on Sunday. I think it did some of them a lot of good to see me up and around.

I had a catheter in until Sunday morning. After that, I had a lot more freedom. :)

Starting Monday, I was able to walk alone. It felt good to get around and also to not depend on others for everything. I was allowed to unhook and rehook my Doppler lines for my walks. Was nice to have that independence and, because I knew what the Doppler was supposed to sound like, I was always quickly assured that things were still going as we needed them to.

I finally got the okay to go home on Tuesday morning. Things went quickly from that point. Staples and wires removed for Doppler, learned how to strip my drains, got my IV out, and got the heck out of there within a few hours.

Drains. My nemesis. LOL I have four. One from each breast and one from each hip. They're stiched into me and part of the drain lines and their whole bulbs are on the outside of my body. They drain the extra "surgical gunk" from your body. This is major surgery and it's traumatic on your body. The drains help your body to recover.

But now that I'm home, I have to strip them and measure them three times per day. And because of them, I constantly wear a mastectomy camisole that has pockets for the drains. My insurance company paid for my camisole, and I couldn't be more grateful. The mastectomy camisole is one of the best inventions ever! As for the drains, they cannot be removed until they are at less than 20 CCs two days in a row. And the doc (or his nurse) has to be the one to remove them. Two are already measuring low enough that they could come out. One is too high and one is waaaay too high. I have a post-op follow-up with my doc on Tuesday and I'm hoping at least the two come out then.

The drains make it hard to wear clothes. The camisole helps for sure. But your pants still have to ride low to not pull the hip drains and your shirts have to be oversized to not squeeze against your breast drain sites.

I was able to take a shower unassisted at home on Wednesday. Will do it again this morning.

Baby steps. That's where we're at. I need to take it easy and allow myself the time to heal. I have to let my body do its job.

Sleeping has been the. hardest. thing. since I got home. I can't lay flat yet. I can't sit certain ways based on the drain sites. Sitting anything but straight up hurts my tailbone, but sitting straight up makes it really hard to sleep because my head flops over. I finally found a way to lay on the couch propped so that I can still get up by myself. And I found a comfy way to sit during the day. I got my first good sleep since being home yesterday, and it felt heavenly. It's only going to get better from here!

Emotionally/mentally is hard for me. Nothing at all to do with having my breasts removed; that really hasn't affected me. But not being able to take care of my family like I usually do and relying on others for many things (lifting, reaching, picking things up off of the floor since I seem to have developed a case of the dropsies). I am a fiercely independent person so relying on others is the hardest thing for me.

I think that's it for now. I'd be glad to answer any questions you may have. And I'll update likely after my appointment on Tuesday.

<3

My messed up self

People keep asking me if I'm nervous. I've been able to say no, until this morning. The butterflies are settling in.

Today is my last day at work until who knows when. I have so much to do today to prepare to work from home for a while. Tonight is my last night at home for a (hopefully very little) while. Tomorrow morning, when I send my kids to school, it will be the last time I see them until the day after surgery.

I'm trying not to think about it, but it's in my face and hard not to think about. I feel nauseous today and it's all nerves. I highly doubt I'll sleep at all tomorrow night.

I'm a dang mess. Ugh.

3-2-1

Three days til surgery day.

My emotions are all. over. the. place.

I'm still 100% glad I'm having this surgery. I still know with all of my heart that it's the right thing for me to do.

But I am an emotional mess.

Probably doesn't help that I am in medical menopause. LOL My hormones are wacky, though I do take them nightly now. Besides, I really can't blame my emotions on hormones when I've always been an emotional mess with certain things.

Things like anesthesia.

And leaving my kids for any amount of time.

And missing my kids' activities.

And all of those things are happening. In three days.

I'll be in the hospital for "three to five days", which I'm assuming means I'll get out on Tuesday at the earliest, since U of M does all discharges by 11am. But I'm going to push myself to get out on Monday if I can. "Push myself" isn't necessarily a bad thing. I'm going to do all I can to heal well, eat, walk, poop, shower, whatever I need to do to get the okay to be discharged.

So I can get home to my husband and kids and get back to work (working from home for a while after surgery).

I did a three-week meal plan on Sunday. And I bought all of the necessary groceries except the fresh stuff. I also started packing my hospital bag which, just as when I was in labor, has more stuff in it for my husband and kids than it does for me. LOL I need to make sure my people are taken care of when I'm physically unable to actually take care of them.

And that weighs more on me than anything else.

I'm worried about my family. Like many moms, I am the one who does everything for everyone at home. I do it because I want to. I do it as a way to show my love. And I won't be able to for a little while.

And that bugs me.

But that's also a big part of what drives me to have this surgery.

I want to be around for a long, long time. To be able to enjoy life with my family and friends. To be able to take care of those I love.

And so...

I'm going for pre-op (to be marked up) in two days and am checking in to the hospital in three days.

It's getting closer.

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.