Diep 2012

Hi, everyone!  It's been a week since surgery and the brain is up to typing again.  A short recap that I sent my friends--hope it helps some of you:

Hi, everyone . . .   I certainly won't be offended if you don't read my update, but I wanted to let you know that I am recovering comfortably at my parents' house.   I knew I was going to be in ICU at least until Wednesday, but didn't realize what that meant.  I don't think DH or my parents' did either.  When they got to see me, the nursing staff asked who was going to be with me overnight.  We hadn't planned on this.  I think if we had, DH and/or my mom would have taken a nap in the afternoon.  They were there in the ICU to greet me (apparently, it's supposed to only be one visitor at a time, but they let all of them come in).  I was in a HUGE room with bay windows that had a great view of the mall across the street.  Of course, the only equipment I had was the IV drip thing and a vital sign monitor, so the room was really empty.  I just remember feeling warm and sticky.  I was warned I couldn't use my arms, so the put the morphine pump button and the nurse call button next to me.  I dozed back off and the family left.  Apparently, they decided over dinner that DH would shower and spend the night with me and mom would relieve him the next day.  I didn't quite know what some of you meant when you said were so glad the hospital let a family member stay in the room.  Unfortunately, the so-called pull out bed wasn't very comfortable.  But it was wonderful to have DH there to scratch my back and shoulders and wipe my face with a damp wash cloth.  I don't think he got much sleep since they checked on my every hour to  make sure I had good blood flow to the flaps.  Funny thing was that after they left for dinner, the phone rang with the nursing staff was in the room.  They answered it and I was surprised to be receiving a call.  Apparently my friend Melinda's husband, the psychiatrist, took advantage of his position to get a call through to me and put her on the line.  I managed to tell her that I was ok and to ask her to come pick DH up some time on Tuesday.  She was surprised how lucid I appeared.   By Tuesday, I was feeling a bit better and was up a bit more with it.  The plastic surgeon bounded in before 7, looked at everything and told me he was pleased with the results.  That meant that I got to eat real food.  Next thing I knew, there was a breakfast for me.  I ate a bit of it (DH had to feed me).  The was relatively uneventful.  I used the morphine whenever I had a slight edge, but think I hit the pump a total of 5 times (never mind the fact it was set up to do a drip every hour automatically).  I had to do these breathing exercises and was given additional oxygen (more plastic tubing--yuck).  DH went home that afternoon for some much needed sleep and mom spent Tuesday night with me.  I was a little less cranky because the nurses had figured out how to keep me cooler in spite of the "bear hugger" blanket I had to have.  

I got good news on Wednesday:  I was going to get to move to a regular room on the surgical floor when one opened up.  DH returned mid-morning.  By then I had finished all my morphine and they decided to start me on the Valium and hydrocone.  Boy., that stuff knocked me out.  And made me nauseous.  At least I knew I couldn't throw up since I didn't have much in my stomach.  Dh had fun watching the vital sign monitor and playing with his new ipad.  Finally at 11:30 pm, the nurses came in and said they found a room for me.  I got wheeled down there and they wanted me to shift beds.  I told them I wasn't supposed to move, so I got left in my lumpy ICU bed.  All the pads and sheets had gotten bunched up and I couldn't do anything about them.  The weird thing about this room was it was a negative pressure room (think Contagion or SARS).  It had double doors that would beep if not completely closed.  The bad thing about Wedneday was they were supposed to help me "freshen up" but the nurses got busy.  I was so out of it and slept so soundly, they decided not to give me any more narcotics and I didn't even notice when DH left sometime around 3 am.

On Thursday, I got to use my arms a bit, but still banished to my bed.  My sister had called at around 8 to let me know DH had gone home to sleep.  I figured he'd stay home and do some neglected house chores and catch up on his sleep.  I finally was feeling better.  A couple friends came by late afternoon and I was able to chat with them (greasy hair and all).  Melinda came by again and mom went home.  The though of  hospital food didn't appeal to Melinda (even though the nurse brought a Popsicles as a treat), so she went out and picked up some BBQ.  I didn't have much, but it was tasty.  She offered to spend the night, but I was pretty worn out from no nap.  I made it though the night, barely opening my eyes during the nurse checks.

 On Friday, I got the good news:  I was going to get out of bed, have a shower, and be discharged.  Of course, nothing moves very fast.  The first step was catheter removal.  That was funny b/c my bladder felt so full.  Turns out, I'd be squirming and put a kink in the tubing.  Followed half an hour later by sitting in a chair.  By then, breakfast had arrived and I ate that (for the first time, they called me to ask my preferences!).  By the time mom arrived, I was getting ready to have my first trip to the shower.  I was so thankful for the assistance of the nursing staff to guide me though the process and scrub my back.  The warm water felt so good.  DH arrived just after my lunch did (again, I got to order!).  It was slow moving, but eventually, at 2, they came to give my my discharge papers.  I think they timed it so the new shift of nurses wouldn't have to deal with me.   We made it home without incident.  Although I couldn't (and still can't) completely straighten my back, the stairs have not posed a problem for me.  Getting into bed was a bit tricky the first night and there was some intermittent pain, but overall, it hasn't been bad.  I'm a bit more tired than usual and Sunday night was the first time I could sit at a computer and actually type (I pecked a few things on either the Kindle Fire or the ipad and could read some stuff as long as it was short).  I was also able to read the paper Saturday and actually finish a book Sunday.

I will say this:  I don't know why people voluntarily have cosmetic surgery.  I don't regret the surgery, but I didn't realize it was going to be this complicated.  Although DH encouraged me initially to postpone my lumpectomy and just go through one surgery (the one I ultimately had this week), I think I made the right decision to have what turned out to be a surgical biopsy before this surgery.  I'm also glad I delayed until my parents were back from their trip.  All this gave me time to mentally prepare and digest the comments on the forum boards.   Thanks to all of you for your support, commnents, suggestions, and encouargement.  It means a lot.   Now, I'm looking forward to Tuesday's first post-op appointment when I can get rid of two drains (yes, there are tubes and bulbs coming out of me and staples and big stitches).  But, thankfully, nothing hurts and I don't really have any complications.  I'm also thankful that but for the DCIS, I am pretty healthy.  I know that has made my recovery easier (I was a bit worried when I was warned not to go up and down the stairs to much and to rest if needed--I think I felt better going up and down the stairs post surgery than I did after my first 2 marathons!). 

iswim - Thank you for such a detailed message.   Gives me more of an idea what to expect immediately after surgery while in hospital.   Hmmm, I had not thought of having anyone stay with me.  Still working on a schedule for who will be helping me after I am released.   So much to think about!

I called Mayo once again today because I have not received anything in the mail confirming my surgery or pre-surgery details.   LOL...I know they are so sick of me.   She reminded me that my surgery is in June so I will not be scheduled for any of the pre-surgery things until at lest May.   However, she did assure me that I am ON THE SCHEDULE.  Sigh, now I just have to sit tight and wait.  Is there anyone else as anal as me on this?  

Glad my post (I thought I was rambling) is helpful.

 Keep in mind, every PS is different.  Mine requires no special garments and no special diets post surgery.  Just a bit of gauze on the oozing bits from the drains (which is not a big deal as long as they aren't red or irritated).

 Another tip:  a bit of diaper cream really helps if you end up with any chafing from the bed on your butt/hips.

LOL, Texas! and Swimsbikesruns, so glad you came through the surgery well. Good to know some of the details to be aware of...

iswim, great update!! so good to hear from you -- thanks for taking the time to provide such good detail on your experience.

texas, hilarious! when they say, "get a room," they don't mean a HOSPITAL ROOM!

what is this about someone staying in the hospital room...? i haven't been told this and don't really want to ask my friends to sleep at the hospital.

Texas, your his 'n hers shower story was hysterical. But maybe not the ideal time for a giggle fit when you don't want to blow your abdominal stitches. Haha. My DH spent two nights in the hospital with me. The first night in the ICU (zero sleep) and one night in my private room (little sleep). It really helped to have him nearby to help especially when I couldn't move. After that, I made him go home to get some rest. iswimbikerun, glad you posted a detailed account of your experience which is invaluable to those currently scheduled for surgery. Doctors don't tell us these details. We have to get our information from first hand accounts of women who have gone through it. Everyone's experience is different but at least we get an overview of the types of things that may or may not happen. Bottom line for me:  1) it wasn't as bad as I imagined it was going to be; 2) after the first 2-3 days, it gets exponentially better, 3) once you have healed, you won't look anything like your first horrified peek at the incisions; 4) I'd do it again in a heartbeat. Completely do-able. Good luck and best wishes for all those coming up. If you have questions, ask away - we are here for you.

Hey, we paid for that room!!

I also had a large private room with the very uncomfortable sofa bed. Poor DH. I know he couldn't have gotten much sleep. Lucky for him, he's a heavy sleeper and can pretty much sleep anywhere. It's pretty hard for anybody to get any sleep as long as they are doing the hourly doppler checks for the first 48 hours. After that, it went to every two hours so it was a little bit better. But I'm glad he was there. Not only because I needed him to help me out of bed to get to the bathroom, but also because I needed him to unhook the leg thingies that are strapped on both legs to keep you from getting blood clots. Sorry- no clue what the technical term for those is.

But yes, I totally agree with c8ndygr1's bottom line. There were some not so great moments and sometimes it was harder than I thought it was going to be- but it gets better and I would do it again in a heartbeat too.

This is a hysterical story. Heaven knows we deal with the serious stuff enough!!

DH will stay with me in the hospital while I am in ICU.  Don't think I will have a funny story like that.  My husband would have passed out from enbarassement. 

My DIEP is tentatively scheduled for first week in June. 

I had a private room and although my husband would stay late I never wanted him staying overnight I wasn't getting much sleep with someone coming in every hour so I knew he wouldn't.

I had just finished chemo and I was trying to rebuild my system so I had been eating healthy before surgery. They were sending me overly salted food, white bread, desserts with Splenda after I sent tray 5 back untouched they sent the nutritionist to tell me I had to eat. I explained that the hospital food would not help me get better and she agreed with me and asked me what I wanted. From then on out it was all fresh veggies, salads, fruit plates and fish to equal anything found in a good restaurant.

I am 5 weeks out and except for being stiff if I sit too long I feel great. My friends all say I wouldn't want to go through what you did but you look really great with your new boobs and flat tummy. I am thrilled this surgery was available it may be rearranged but it's still me!

Mary- your story is hysterical. My husband left his clothes on and came out soaking wet.

Meegan,



I took two full weeks off work with no working at all from home. None. Zero.



Then I started back half-days from home for 2 weeks. I went into the office on Monday last week, and was abolutely a wreck (had to go in for the whole day because my deputy was out). I had planned on working whole days from home that week, but was so trashed at a whole day in the office that I only worked half-days. I am working whole days from home this week and I am TIRED. I plan to start back half-days in the office next week, but will see how it goes. I am six weeks out tomorrow.



My PS said I shouldn't be so tired, but that I have to heal at my own pace. Everything is healed and beautiful and my scars are just about disappearing. I am done with compression as of today, too.



I have an office job (I am director of outreach for a small government agency). My commute is not onerous, but I am just so damn tired.



My revisions were not exceptionally extensive (I don't think, anyway). I had the scars on both noobs revised where he had paddles (like eyes) of belly skin he used to monitor the flaps right after surgery. He took them out. He revised my belly scar where the middle 6 inches opened up. He took care of the dog ears (teeny ones, more like kitten ears!) and the muffin top. He lipoed my saddlebags and fat grafted on the tops of my noobs where they were a little flat. So not too much rummaging around. Surgery took 5 hours.



I just don't have many reserves of strength and have also been just beaten up by circumstances over the last couple years, which might contribute to my fatigue. My mother died in June 2010 from metastatic colon cancer. I broke my arm in 2 places in September 2010. One of my close friends was dx with a glioma in December 2010. I was dx with my recurrence in June 2011, had my DIEP in August 2011 and my sister progressed to Stage IV breast cancer in November 2011. She died on Valentine's Day 2012 and my friend with the glioma died two weeks ago. It has been a seriously sucky time, so I might be tired from that too. I am also looking at an ooph in the next couple of months. I think i need a nap! :-)



Err on the side of working at home an extra week if they'll let you.



Let me know if I can help.



L

HappyLibby, hard to imagine what you went through when fighting BC yourself. My thoughts and prayers are with you and your family members.

Libby:

I'm so sorry that you've had to endure so much pain and sorrow.  My thoughts and prayers are with you. 

I just took an hour to read these posts, and feeling much better than the weepy gir I was this morning. When I read that there's no caffaine I cried a little harder, but now I'm bucking up. So grateful to read everyone's stories.

My DIEP will be in 6mos- 1yr and I'm terrified.  I had bilateral cancer, so had two lumpectomies, two node dieesitons, w positive nodes on the right side. I had surgery last August, and then a ressection of the margin (right side ony) two weeks ago. Rather than be radiated on both sides, I've chosento only radiate the right side (with the nodes) followed by a BMX. This has been the hardest desicion I've ever been faced with , and I'm still not 100% this is the right route for me. If I have radiaiton only, I can be through with cancer treatment in six weeks. And I can keep my boobs (already scarred), and avoid scarring on my tummy. But the BMX will reduce my chance of recurrence by about 5-10%.I want to feel like I'm doing everything possible to prevent any cancer from returning, but my RO thinks I man be overdoing it. The surgeon disagrees. Does anybody else get so confused that they second guess their desicion? How do you know when it is the right diescion for you. All my doctors have different opnions, or they say 'it's up to you'. I understand that the desicion is mine - I just want to make sure it's right.

Bdavis - I love that you cancelled your mapping the morning of your appointment. It made me feel like anything was possible

I've done tons of research, and second opnions - yet I'm still sort of on the fence. Part of the reason I want to avoid radiation is becuase I don't want it anywhere near my heart. Ultimately I'd choose a strong heart over some scarring, anyday. And even though I love and trust my surgeouns, I am terrified of surgery.

What I'm wondering is, do others waffle over this desicion? Right now it's all I can think about. I'm trying to keep my eye on the big picture (less recurrence) but just when I'll be getting my life back on track after 8 months without working, it will be disrupted all over again.

I'm doing the right thing. Right?

bdavis  

Thanks. I'm doing my best to commit to the idea. I have to remind myself about the anxiety of waiting for test results, and the possibility of further disease. Also it's the advise I'd give my best friend, if she was in a similar position.  And everyone's experiences help to make it more familiar.

I'm just so scared. Before BC I had no dealings with hospitals, my GP thought I was the perfect patient,  and I still turn away when I get a needle. (Though I very much enjoy the occasional Percocet). But I find the thought of a long surgery almost unbearable.

Janet: like you before BC I never saw a doctor other than a physical and mammogram. Everyone is some measure of scared when thinking of surgery it's a huge decision. I wanted to do everything I could to prevent recurrence so the pain of surgery for me paled in comparison to having to walk this path again. Best wishes in your decision. For me this surgery was worth any pain which in the end the pre-jitters of my imagination were a lot worse than the reality.