Wednesday, December 30, 2009

Wednesday, December 30, 2009

My PS's office called today to schedule an abdominal CT to see if the swelling is due to muscle laxity. It's scheduled for Jan 4. I thought he was going to wait to order the CT until after my Stage 2 surgery in February, but I guess he changed his mind. That's ok with me because I'd rather know sooner than later just exactly what's behind this problem.

Dr. S said I'd start to have some "electrical shock" type sensations within a few months after surgery. He says it's a sign that some of the nerves are starting to regenerate. I've had several of them in the last week. They are very brief, but definitely there. A good sign.

Monday, December 28, 2009

December 22, 2009 office visit

I saw my PS today for a final consult before my Stage 2 surgery on February 3, 2010. Three separate procedures will be done during that surgery, in this order - ovary and uterus removal, bladder lift, stage 2 breast revisions. My PS's goal is to make my breasts symmetrical since the left is slightly larger. I would need a small implant on the right to match the left side, so I definitely said no to that. The whole idea was to avoid implants. So, the left side will be reduced slightly to match the right. The right side will have some fat grafts to plump things up abit and create a more natural slope. That will involve some lipo. I've heard that is quite painful, but he says it won't be nearly as invasive or painful as regular cosmetic lipo. There will be lots of bruising, though, and I'll have to wear a compression garment for a week or so. Breast drains are a slight possibility, but if I need them, they'll be removed at the first post-op visit in 6 days. Both breasts will be moved towards the center more. They're a bit to the east and west right now! He thinks he will most likely be able to do nipple creation assuming everything else has gone well up to that point. He'll also remove the dog ears at the end of the abdominal incision.

My abdominal swelling remains the same. Very annoying. I was afraid he'd want to open the abdominal incision to see what's going on, but he said let's wait until the Lupron has a chance to wear off (February 10 will be 3 months). If Lupron isn't the cause of the swelling, then he'll order a CT scan. If necessary, he can use abdominal mesh to pull my abdomen back in. I was worried that I'd be left with a "tight girdle" feeling if he has to do that, but he says I won't. He says it will be unnoticeable. So, I'm still hoping that Lupron is the culprit because I certainly don't relish the thought of any more abdominal surgery.

He said I'd stay one night in the hospital as far as he was concerned. Any additional days would be at the order of the gyn and/or urologist. Let's hope not.

Monday, December 7, 2009

Monday, December 7, 2009

My biggest complaint right now is still abdominal swelling. After consulting with the PS and oncologist, the two possible causes are the Lupron or some abdominal fascia laxity. The frustrating thing is that there's no way to know for sure just now. The Lupron won't wear off until mid-February. I've read that a CT scan can detect abdominal laxity, but I don't see the PS again until just before Xmas. He assures me that if that's the cause, then it's very easily corrected during Stage 2 surgery. I'd rather him find out from testing than to do any more exploratory work than he absolutely has to.

I had a consult today with a urologist. He plans to do a bladder lift during the same surgery. I can thank those two big babies I had for that problem! They were worth it, though! So, assuming the PS and gyno's procedures go well, the urologist will do his procedure last. I guess it's kind of like going in for an overhaul - ha!

Sunday, November 29, 2009

Sunday, November 29, 2009

I had two doctor appts last week to see if I could find out why my lower abdomen looks like I'm 3 months pregnant. From what I can tell, it's probably due to my last Lupron shot on November 10. Within 4-5 days, my lower abdomen was noticeably distended. Before that, my stomach was flat as a board. I saw my PS last week to see if it could be the result of my surgery. He says no. My abdominal muscles are very strong and he does not believe this new symptom has anything to do with the DIEP. Wearing my abdominal binder doesn't seem to help at all.

Had a consult with a gyn to discuss ovary removal. She did an exam plus ultrasound but everything is normal and she didn't see any reason for the abdominal swelling. She will coordinate with Dr. S so she can do ovary removal during my Stage 2 revision surgery. I'm shooting for a late January surgery date.

I found several references to abdominal swelling as a side effect of Lupron. I'll check with my oncologist this week to see if she has experience with this side effect. It was a 3-month shot, so this swelling may last that long. It's not painful, just very annoying and tight feeling. I hope to gt some answers this week.

Saturday, November 14, 2009

Saturday, November 14, 2009

Had a 6 month checkup with breast surgeon. This was the first time she had seen me post-DIEP. She thought everything looked very good. She wants to see me every 6 months until I reach the 2 year point, then once a year after that until I reach 5 years.

Dr. S says I can start weaning myself from the abdominal support over the next 2 weeks. He also promises that the abdominal tightness will relax as I become more active. When I think back to how it felt right after surgery when it seemed hard to take a deep breath, I realize that it has already loosened up quite abit. It's strange, but some days it's quite uncomfortable and tight, then other days it feels alot looser. I can't seem to find any reason for it. It doesn't seem to be related to how much I move around each day. I can definitely say that I'm looking forward to the day when it's not even noticeable. It makes me feel kind of claustrophobic at times.

Wednesday, October 28, 2009

Tues, Oct 27 Oncologist Office Visit

Had a scheduled oncologist visit. Blood work shows that red blood count is a little low. Doctor says that's not unexpected considering my recent surgery. Looks like I should be eating a more iron-rich diet. My doctor thought my Stage 1 surgery results look very good. I am scheduled to get 1-2 more Lupron shots before my Stage 2/ovary removal surgery. I have a consult scheduled for Nov 23 with a new gyn who will most likely do the ovary removal. The doc asked me if I have any side effects from Arimidex, which I started taking in August. She said it can cause joint pain. I haven't noticed anything other than my normal, occasional knee stiffness. Advil works fine for that. She said if it gets worse, I can take 1500mg of glucosamine/chondroitin 3 times a day. Bone loss is also a side effect of Arimidex, so I'll have another bone density test in January.

I'm feeling good. I'm up to walking 1 1/2 miles on good weather days. Sleeping tons better, too.

Just this week I noticed a marble-sized hard lump in my right breast. Dr. S says it's either fat necrosis or scar tissue and is common and nothing to worry about. It'll be removed during Stage 2 surgery. He also said that abdominal tightness should start to subside in 1-2 months. It's already loosened up, but still has a long way to go as far as I'm concerned. It feels like wearing a tight waistband.

I'll be glad when all these doctor visits slow down!

Tuesday, October 20, 2009

October 19, 2009 Office Visit

I saw Dr. S. today. He's very pleased with my progress. They also took photos today for my official post-Phase I results. Even the photographer commented on how good everything looked. After going through this whole process, I guess I've finally gotten used to being viewed, poked, and prodded by assorted medical professionals!

Dr. S mentioned that mesh was used in my surgery. I was able to get more info about it during this visit. It's a natural mesh that my tissue will grow around, not a synthetic mesh. He used it to reinforce the abdominal area. He cautioned me again not to lift anything over 10 pounds, no sit-ups or crunches and to be careful not to stretch my abdomen too much. He also said I should avoid any heavy lifting for the next 6 months to a year.

He wants me to wear my abdominal binder or some type of support garment for now. I found some light-support underwear made by Hanes that seems to give enough support without squeezing too much. I can wear any type of bra now - even underwire if I want. Dr. S says my new breasts are part of me now and that I don't have to worry anymore about whether the flap will survive. I can sleep in any position now without worry. He also said to expect some "electric shock" type breast sensations as the nerves connections start improving.

I asked him what to expect during my Phase II revision surgery. He said he'd do a small amount of lipo at the outer edges of my abdominal incision to smooth out that area and then use it as fat grafts to "fluff up" any breast areas that need it. He'll also correct small dog-ears at the ends of the abdominal incision. The areolas and nipples will be created at that time. I'll wear foam shields over them until they heal.

I still need to have my ovaries removed, so Dr. S said that can be done during the same surgery. The doctor he recommended does a robotic-assisted laparoscopy. His office will give me a doctor referral since I need a surgeon that has privileges at that hospital. I want my uterus removed in addition to the ovaries. I've been discouraged from that by my previous GYN for reasons that aren't clear to me. In my mind, it will be one less thing to worry about. So, we'll see how the new consult goes. I've also requested the same anesthesiologist because he prevented me from all the nausea I've had in past surgeries.

We also discussed Phase II timing. I could have it done in December, but I've decided that I want to wait until later in January so I can enjoy my family and the holidays without trying to recover from another surgery. We had originally planned to do this in December since I'd already met my deductible for this year, but I've changed my mind. I just want to feel good and enjoy the holidays. I will have to meet next year's deductible for other things anyway, so I guess it really doesn't matter. I left his office feeling very relieved that I can finish this year out without any more surgeries. I'd say that a bilateral mastectomy and reconstruction is plenty for one year!

My biggest physical complaint right now is abdominal tightness. It's a bit of a strain to take a deep breath. I can, but it feels like my diaphragm is constricted to some degree. Dr S said this is normal and will improve greatly over time. I'll keep reminding myself of the progress I've already made and remember that "this too shall pass". I've started slowly walking again and am up to a mile now.

My next visit with Dr. S is scheduled for early January.

Wednesday, October 14, 2009

Wednesday, October 14, 2009 - I decided to drive today for the first time since my surgery. I met a good friend for lunch then went to the grocery store for a few things. Wow - I never realized you used so many chest and abdominal muscles just to push a grocery cart. I felt funny asking the bag boy to carry my groceries to the car for me. I never do that. I was really tired by the time I got everything put away at home. I was very careful not to lift much, but still, it wore me out.

I realized that I'm not breathing very deeply since my abdominal area feels so tight. It doesn't hurt to breathe deeply, it just feels strange. I'm going to focus on breathing deeper because that may be one thing that's making me feel tired.

Monday, October 12, 2009

Monday, October 12, 2009 - Office Visit

Another nurse visit today. She removed the last drain today - I'm free! She also removed some stitches from my navel. Thank goodness I didn't look and couldn't feel it because it would have freaked me out. My navel is really the only area that still looks kind of red.

I'm also released to drive, stand up straight as long as it doesn't "pull" too much, and sleep without a pillow under my knees. She said to make sure I eat lots of protein which will help with the healing process.

I asked about the "mesh" that Dr. S. mentioned last week. It's an Alloderm mesh. I see Dr. S again on Monday so I'll ask more about it then.

I've been experiencing periods where my abdomen feels like it's tightening up. The nurse says it's muscle spasms and perfectly normal. It's not exactly what I would call painful - just uncomfortable.

I've slept more soundly the last few nights. It's a relief to be able to sleep on my side now. No more being awake for hours in the middle of the night. That alone does wonders for my mood!

My husband and I went into a couple of local stores after we got home. I can tell that my stamina isn't what it was before. I've been doing so much sitting the last 3 weeks. It's time to start walking again now that I can walk upright. I gently walked up and down my street about 6 times this evening. It felt good to be outside moving around.

Wednesday will be 3 weeks since my surgery. I never expected to be doing so well in such a short time. I'm very thankful!

My next doctor visit is Monday, Oct. 19.

Thursday, October 8, 2009

Thursday, October 8 - Office Visit

I went for another nurse visit today. I knew the purpose of the visit was to remove one or both remaining drains, but I promised myself that I wouldn't get my hopes up. I didn't want to repeat my drain meltdown from Monday. Lucky me, she did remove one of them, but Dr. S wants to wait until next Monday to remove the last one just to be on the safe side. I can handle that. When I'm down to one drain, I just stuff it into my pants pocket instead of pinning it to my clothes. For some reason, that gives me just enough of a mental boost to tolerate a few more days with that last wretched drain.

Still not sleeping that well because it's hard to get comfortable. I've learned to get up and do something until I get sleepy enough to go back to bed. I'm careful not to nap in the day so at least I have a shot at sleeping through the night. I'm not worried, though. Solid sleep will come in due time.

Still not allowed to drive or stand up fully straight because I don't want to stretch my abdominal incision. I must say, I'm so pleased at how well my abdominal scar is healing. The parts of the incision where the scabs are gone are just thin pink lines. I guess that's due to the dermabond he used. It's only at the ends of the incision that there's evidence of suturing below the skin. Dang, he's good!

More on Monday.

Monday, October 5, 2009

Monday, October 5, 2009 office visit

This was the first time I'd actually seen the doctor since my surgery 12 days ago, although I was in last Friday for a nurse visit. Dr. S was very pleased with how everything is healing. He was surprised that I'm managing without pain meds. I'm not trying to be a hero; I just don't need them. Tylenol and Advil do the trick.

I talked to him about my serious sleeping problems. For instance, I slept for 2 1/2 hours last night. I just can't sleep on my back anymore! He said that it's ok to start sleeping on my sides "lightly". No driving just yet. No need to wear the abdominal binder. No walking fully upright just yet although I can walk around as much as I want. No lifting anything over 10 lbs.

He broke it to me at the end of the visit that he wants to leave the 2 drains in for a few more days because it creates extra suction to hold the mesh in place. What mesh? I don't remember anything about that, although my husband said he was told about it after my surgery. I was completely thrown off guard by the drain issue, so I was doing my best to hold back tears. I'll find out more about this mesh when I go in next week.

It's funny how a week of sleep disturbance plus the news that I have to keep these drains for another week can really do a number of me. I kept from crying in the office, but cried all the way home. My poor husband. He was very sympathetic but I know he didn't really get it. He has a normal perspective on it - "just a minor setback", etc. But, to me, it was huge! I knew I was overreacting, but I just couldn't seem to get a grip. So, once I got home and had a little lunch, I decided that a side-sleeping nap was in order. I slept like a rock for 4 hours! I felt alot better once I woke up.

So, for anyone considering this surgery, please be warned that you'll probably have moments where you emotionally crater. It makes all the difference in the world if you have a reasonable and supportive husband. Thank goodness I do!

Friday, October 2, 2009

Fri, Oct 2 - First Post-Surgery Office Visit

To get ready for my first post-surgery office visit today, I got in the shower last night. Showers have turned into lengthy processes these days, although I'm not complaining. I'm just thankful I can actually shower rather than taking sponge-baths. It took me at least an hour to shower last night. Another crappy night of sleep on the recliner and loveseat. Stalked Facebook and did emails and other Internet surfing until I got sleepy - ha! That was about 2-5am.

Had my first post-surgery office visit today. Dr. S's nurse removed both breast drains - hooray! I go back on Monday to remove the remaining 2 abdominal drains. What a relief. Didn't get to see the doctor, but I will on Monday. I feel like I should genuflect (no offense intended) when I see him. I think he's nothing short of a miracle worker and an artist to boot. If anyone is considering having this surgery in the Dallas area, contact me and I'll give you his name. The hospital has hotel rooms on site if you need to travel for surgery.

The nurse says I don't have to wear my abdominal binder any more - although I must admit I've never worn it except the day I was discharged from the hospital. It looks like a foot-wide ace bandage and it wouldn't stop sliding up my abdomen. So I wore it for a total of 1 hour on the drive home. I'm supposed to still avoid standing totally upright, but have not really used the walker Dr. S suggested. Too cumbersome. Guess my back muscles were stronger than I thought. I'm allowed to walk as much as I feel comfortable with, but not allowed to sleep on my side for another couple of weeks. I forgot to ask about driving. For now, my husband is taking vacation time and can drive me anywhere I need to go. I'm supposed to sleep on my back only with a pillow under my knees so my abdomen isn't too straight.

Still managing discomfort with Tylenol. Hope I finish my antibiotics soon because they're giving me heartburn. Pepcid seems to fix that.

Had a nap on my own bed plus sat in the backyard with my husband this afternoon. It's been a great day all around! More on Monday after my next office visit.

Thursday, October 1, 2009

Thursday, Oct 1 - Another fitful night of sleep. Couldn't stand the recliner anymore, so I moved to the loveseat. No good. Then to the living room couch which was much more comfortable. But when I tried to get up, I was like the proverbial turtle on it's back! I took a very mild sleeping pill before bed, so when that hadn't helped in 1 1/2 hours, I took a second one. Wow - a little too much for me, but I did at least sleep better. So looks like nights are going to be the hardest time for me for awhile until I can sleep on a more comfortable surface.


I went all day just taking Tylenol. That worked fine for pain. I did have to call the nurse because one abdominal drain kept leaking right where the tube emerges from the incision. She said that wasn't that ununual. We had already been careful to strip the tube thoroughly, but it didn't change anything. Well, for some reason, it's quite seeping as of this morning.


I have my first office visit on Friday morning. According to the nurse, if each drain produces <20cc>

Both breasts are looking less bruised. Abdomen still has some areas of dark bruising near the incisions. Swelling doesn't seem to be excessive and the whole abdomen is quite firm to the touch. I don't want to do much poking around, though.


As far as sensation goes, the skin areas that had started to regain sensation since the mastectomy (the low, center part of each breast about an inch or so in diameter) still have the same amount of sensation as before the DIEP. At least nothing was lost there. Dr. S says that it'll be 6-12 months before I start regaining much sensation, but I do feel internal sensation to some degree, if that makes sense. Not on top of the skin, but inside the breast. Certainly nothing like normal, but at least I know they're there! It's wonderful not to feel the seams of those darn expanders poking out under my skin. And wonderful not to feel my pecs right under my skin. I just couldn't get used to being able to flex my boobs! These already look more like real breasts even though they haven't softened up yet and are kind of wide and flatter than they will be when they're fully healed. It seems like they'll be a pretty good size match to the originals!


Dr. S said that he did nerve reconnections during the DIEP, so I'm looking forward to talking to him more about that tomorrow.

Tuesday, September 29, 2009

Home from the Hospital, Tues, Sept 29, 2009

I apologize the the lack of posts, but my husband couldn't get his computer to jive with the wireless network at the hospital.

Day 1, Wednesday, Sept 23 - Surgery was 12 hours including the time it took to reconnect the chest nerves. A long day for everyone but me because I wasn't aware of time, of course. Spent the first night in the ICU so Doppler pulses could be monitored every hour. The anesthesiologist was a miracle worker because I had zero nausea - a first! I did need 2 units of blood to get my hemoglobin levels and blood pressure up into a more normal range.

Day 2 , Thurs, Sept 24 - Another day in the ICU. I slept fitfully because I was overheated. They had me wearing a "huggy bear" to keeps nerves dilated. It's a warm-air heated blanket that has to stay over the chest and abdomen. That, plus the leg compression things that I had to wear, made for very hot conditions. Got to start on a liquid diet. I had a morphine pump for pain. I have 4 drains - 2 in breast and 2 at either end of abdominal incision.

Day 3, Fri, Sept 25 - Another day in ICU still waiting for a regular floor bed. Finally able to eat solid food. Still monitoring Doppler readings every hour and sleeping under "the blanket from hell"! They finally turned the temp down a bit which made it a little more bearable. All my ICU nurses were absolutely top-notch! I was surprised that no bandaging was required from either breast or abdominal areas. Got a sponge bath and quasi-hair shampoo from my nurse - yea! My catheter was removed in anticipating of going to a regular floor. Finally moved to a regular floor bed around 10 pm. My hubby was able to spend the night for the first time.

Day 4, Sat, Sept 26 - My sister came for the day to stay with me and give my husband a chance to rest at home for a few hours. Pain pump is gone now, but getting IV morphine and antibiotics on a regular basis. Doppler checks moved to every 2 hours. Nurses had me up out of bed in a chair for the first time. I had some pretty bad problems with constipation, so for any of you considering this surgery, be attuned so things don't get out of hand.

Day 5, Sun, Sept 27 - Started on oral pain meds. Nausea totally controlled with Compazine. Got out of bed and shown how to use a walker so I wouldn't stand up too straight. Respiratory therapy was very attentive to breathing exercises. I started joking with him that he was the "respiratory nazi"! It was good, though. No signs of pneumonia from being down so long. Will go home tomorrow if all continues to go well.

Day 6, Mon, Sept 28 - Home at last! Compazine helped me not barf on the drive home - a first! Still have 4 drains. I have an office visit on Friday where I hope the 2 breast drains will come out. They are barely producing anything. I'm taking Compazine and Lortab for pain and Keflex as an antibiotic. I really needed a bigger, wider nightgown to sleep in to accommodate the drains, so my wonderful husband went to Walmart at 9 pm during a football game to buy dusters for me. Wish I could have been a fly on the wall! The dusters plus the walker really completes the picture. Better to laugh than cry. I've decided I'll burn the dusters when I'm through with them - ha! Slept in the recliner because there was no way I could manage our bed. I suspect that will be my sleeping spot for the next week or so.

Day 7, Tues, Sept 29 - Had a decent night in the recliner. I really feel pretty good, more positive than last surgery. I have very little pain. I'd call it more "discomfort" than pain. No real pain in the breast, just abdomen. I'm moving very slowly so that's hard for me. I look around and see lots of things I'd like to be doing, but can't. Trying not to let that get to me too much. I'm trying to get used to wearing my contacts again after a week without. Otherwise, I'd be reading more. I'm bored and the hours seems to go by slowly, but I remember that all too well from last surgery. It does pass.

Tuesday, September 22, 2009

The Night Before Surgery

I've stayed busy today doing last minute laundry, cleaning, and grocery shopping. I was told to expect a call from the anesthesiologist, so I'm disappointed to say I never heard from him. I got anesthesiology and recovery room records from my previous surgery so I could discuss it with him. I'm sure I'll get a chance to speak to him tomorrow before surgery, so I'll take a copy of my records for his info. I spent several extra hours in recovery after my past surgery due to severe nausea, so this is an important topic to me.

I've had many phone calls today from family and friends wishing me well. Believe me, all your good wishes and prayers mean the world to me!

I'm going to try to sleep now. We have to be at the hospital at 6am. Surgery is at 8am and should take 8-9 hours. The next post (or two) you'll read will be from my husband.

Saturday, September 19, 2009

Pre-op testing

I had my pre-op testing at the hospital on Friday. Bloodwork and EKG. We arranged to get a "executive suite" so I'd be sure to have a private room plus there's a couch/bed that's long enough for my husband to sleep on.

I'm having periodic second thoughts. Why am I going this route when I could just have implants? Am I crazy for considering such an involved surgery? My husband reminded me that I've done my research thoroughly, have an experienced plastic surgeon, and won't ever need to have implants replaced in the future. Plus my pecs will be back where they belong, not right under my skin. It's been 5 months but I can't seem to get used to that feeling. It's not painful at all, just weird and hard to ignore.

I'm starting to make my hospital packing list, shopping for pj's, house cleaning and grocery shopping. Staying busy is a good idea for me. I'm determined to stay positive about this surgery. I feel sure I'll be happy with the results, but I'm just dreading the recovery time because I don't like to be restricted in what I can do. I have to keep reminding myself that I got through the mastectomy recovery period. I'll just keep chanting, "This too shall pass."

Thursday, September 17, 2009

Six Days before Surgery

It's six days before my DIEP reconstruction surgery. I awoke at 4am one day this week with the idea of blogging about my experience. I don't know the first thing about blogging, really, but here goes.


I had Stage 1 breast cancer in 2000 at age 43. I had a lumpectomy with radiation and took tamoxifen for 5 years. After 9 years of clear mammograms, a recurrence was found in late March 2009 at age 51. Diagnosis was DCIS with no lymph node involvement. In addition to a right side mastectomy, I decided to do a prophylactic mastectomy on the left side. This was done in late April 2009. At that time, I had tissue expanders placed in anticipation of having them replaced with implants in September 2009.


At the time of my mastectomy, I wasn't even aware that there was any other type of reconstruction other than implants. After much internet research, I discovered DIEP reconstruction. I found an experienced plastic surgeon who could do the procedure in Dallas; I'll call him Dr. S. In addition to the DIEP reconstruction, he will reconnect the nerves, as well.


I've read many discussion board posts from women who have undergone this procedure, but I've never seen a day-by-day accounting of the recovery period immediately following surgery. So, that's the purpose of my blog. I hope that my experience will be useful to other women considering DIEP reconstruction.


I wouldn't even be considering a surgery of this magnitude if I didn't have such a wonderfully supportive husband. In fact, he'll likely make the first couple of posts until I am able to do them myself.