Had a nice little phone consultation with my oncologist regarding the hormone levels coming back to normal.  He said that they have studied the effects of removing the ovaries or shutting them down chemically on recurrence rates in pre-menopausal women, but the results are totally inconclusive.  With that and the fact that my tumor only showed a very weak positivity for hormone receptors, it would not make sense to take such a drastic step.  I didn't think he would recommend it, but it was still nice to hear.  I don't want any more procedures other than getting my nipples later on.

 

Speaking of nipples, Brian and I had a funny conversation about that. We were wondering - since they are not needing to match an existing breast, is there a catalog of "styles" I will get to choose from?  Or does he each surgeon have his own special nipple style?  

 

I had a great appointment with my plastic surgeon the other day.  First off, he took the last two drains out!  What sweet relief.  He asked if I had been able to get up and around, and I told him I'd been out taking brisk 45-60 minute walks each day.  He laughed and said it's bad when his patient is recovering from surgery and is getting more exercise than he is.  He said I will need to keep my activity level down for another week or two, then I can ease back into my normal routine with weight lifting and more vigorous cardio. He also said I will be ready for full duty by the beginning of February!!  That means just a few weeks of working days on light duty, then it's back to normal.  That made me really happy.

 

I was getting out of the car yesterday, and all of the sudden I felt a gush of fluid on the side of my left leg.  Apparently, I had built up a pocket of fluid where that drain had been, and moving just the right way caused the hole to open up.  It continued to leak the rest of the day.  I called the surgeon's office and talked with the nurse, and she said that's pretty normal.  She recommended putting a sanitary napkin on it with the sticky side against the compression shorts they have me wearing.  So here I am using mini pads on my ass now.  What's next?????

 

When I saw my oncology nurse, Patti, the other day, she told me something really cool.  She has a young patient that was recently diagnosed with a pretty large cancer.  The patient was totally against a mastectomy even though they felt she really needed it.  So they had performed a lumpectomy on her and then started chemo.  Right around that time, I had sent out the link to the website with those photos we had taken by Lynette Johnson (before/after mastectomy and during chemo).  She showed those to her patient, and she began crying and said she would go ahead of have the mastectomy.  It made me feel really good that I had shared those at that time.  When I had decided to have those photos taken, I did it for me and for Brian.  It was Lynette who felt they needed to be shared and now I am so glad about that.

I had my second post-chemo check-up yesterday.  It's funny because I see my oncology nurse (Patti Kwok) for my check-ups, and she is also a very good friend of ours.   She told me something very funny.  She had come to see me after my first reconstruction.  I guess when she got there, they had just brought me out of surgery and were getting me into my room in the ICU.  I do vaguely remember her being there, but evidently I did not remember everything.  When she came into the room, she could see that I was totally out of it.  She asked if I knew who she was, and she told me that I said "Yes, it's the skinny-ass Kwokster with the cold hands!"  I have absolutely no memory of saying that to her.  She said the ICU nurse was cracking up.  I guess even in my delirium, my sarcasm was intact.

 

I did talk with Patti about the fact that my menstrual cycles just restarted.  In one way it's a good sign of my body's ability to recover and get back to normal, but when it comes to the cancer, it's not necessarily a good thing.  It means my hormone levels are back to normal, and this can be bad if the cancer cells are fueled by estrogen.  My tumor was strange in a number of ways, and one is that it wasn't clear whether it responded to estrogen or not.  I am taking Tamoxifen for five years which is a drug that blocks the effect of estrogen in breast cancer cells, but Patti brought up the possibility of having my ovaries removed.  If it was certain that my tumor responded to estrogen, it might be an easy decision to do the surgery, but in my status, it's just not clear.  If I were to do that, it would be permanent and sudden menopause.  Having been through short periods of it twice now (during both times I was in chemo) I am not wild about that idea.  So, I have a phone consultation with my oncologist today to see what his opinion is.  More on that later.......

 

I have been doing something very fun this morning - I have boxed up all of my fake boobs (except for my knitty titties), all of my pocketed bras, and a bunch of scarves and hats to send off to the Breast Cancer Resource Fund that helps women who don't have insurance and cannot afford these things.  It's been very therapeutic to be able to let go of this stuff.

It's Christmas morning, and Brian is at work for half the day.  I thought I'd take a quick moment to catch up on here.

 

I was hoping to get at least one of butt drains out last week, but they felt it was too soon.  I have had the left one in for over 3 weeks now.  Oh well, it's better not to do it too soon.

 

I've been coming to terms with the girls not being the same size.  I've seen a couple other friends who have had reconstruction, and they are not symmetrical either.  I've looked closely at the donor sites, and there might be a slight difference in how much tissue was taken, but not enough to account for the size difference.  I really do think the mastectomy last year on the left was more aggressive AND having had radiation on that side in 1997 caused more tissue damage/fibrosis.  I don't even know if the skin on the left could have been stretched more than it was.  I have a couple areas where a bunch of little vessels broke during the procedure. 

 

Though I know it was the best decision for me at the time, I sometimes find myself wishing I had not undergone radiation therapy.  It was a very easy treatment at the time, but it causes so much tissue damage that isn't outwardly visible.  BUT, if I had not had radiation, I would have had to have a mastectomy in '97, and I don't know if I would have handled that emotionally.  And of course, nobody expected that I would develop another cancer in such a short time.  So now we just deal with the hand we have.

 

I decided rather than have liposuction on the right to make it match the left, I would rather make the left match the right.  So I went to Nordstroms to look into getting those little "enhancers" to wear on one side.  I had forgotten to take a bra as I am not supposed to wear one yet, so the saleslady said she'd get one for me just to try out.  She asked my size, and I said 34B.  She said "I don't think so...."  She fitted me into a 34D!!!!  I was in absolute shock.  I did not occur to me I would need all new bras, so I ended buying 3 cute ones that night and I've been on the hunt ever since.  I pop that little enhancer under the runt on the left side, and it's perfect.

 

So, I find myself very happy for a number of reasons.  Most importantly, I am here!  This has been a very difficult year for Brian and me, but we made it through it all.  Though I was really afraid when I first finished chemo, I no longer find myself dwelling on the possibility of recurrence.  I know cancer will never be 100% out of our minds, but I do believe this is behind us.  We have done everything possible, so it really isn't worth the negative energy worrying about it.  I have another check-up this week, but I am not at all anxious about it.

 

 I am also grateful I was able to have the reconstruction before the New Year.  I look forward to getting back to work and doing the fun things that we love. 

 

I am also grateful that my surgery was successful.  The procedure I had, using tissue from the gluteal area to create the breasts, is not a common surgery, and in many areas of the country, there are no surgeons who can do it.  It has a higher failure rate than other reconstructive surgeries, too, so it takes an extremely skilled surgeon to be able to pull it off.  Performing reconstruction on previously radiated tissue makes it even more difficult, so I feel extremely lucky to have found such a wonderful surgeon.

 

I am also grateful that I have a husband whose heart is 100% with me.  I don't know what I would do without him.  And of course, I have all of you.  I never felt that I needed support groups this time because I already have a huge one!  I hope you know how much we appreciate you. 

 

Here's to a happy, fun-filled and HEALTHY 2007!

 

Camari

 

Went in Thursday for a post-op appointment and both drains in the right chest area were only getting about 5cc a day, so the plastic surgeon took both of them out.  It hurt like hell when he took em out, but it goes really quick.  So now, I only have two drains, one in each hip.  He was laughing when he looked at our log of drainage.  Brian had labeled the two donor site drains as "Left Butt" and "Right Butt." 

 

I asked him a bit more about being lopsided, and he said they like to refer to it as being asymmetrical  :)    He said it is totally my decision if I choose to have the right one reduced a bit with liposuction.  I can't even believe I worry about it at all.  I was "asymmetrical" even before the mastectomy last year as radiation had caused ol' leftie to shrink over the years, and then of course, after the mastectomy, I had nothing at all over there.  When I first saw the left side after the first surgery, I was completely surprised at how much he was able to do.  A week later I was in complete awe after seeing the right one.  I truly think it's bordering on a C cup!  After going through what I did to get it, I don't think I'm willing to give any of it up.  The size difference is truly not even all that noticeable unless I tell someone about it.  And how many of us women out there are 100% even????  Brian says I will have to adjust how I swim so I won't just go in circles now.......

 

I also told the surgeon that I had been trying on bikini tops (this is while I still had the drains in).  He said most women are not ready to do that so soon, and that it is a really good sign of emotional recovery. 

 

The pain gets better every day, and I only take the occasional Percocet now.  When I do, I cut them in half.  With that, I can start driving again.  Brian goes back to work tomorrow, so I'm really glad I will be able to drive.

 

Last February, after just my first cycle of chemotherapy, my periods stopped.  The first time I did chemo, I was in menopause for about 6 months.  This time, they felt it was more likely to be a permanent menopause as I had now done chemo twice, and of course, I am older.  Well, I got a big surprise yesterday.  It has come back with a vengeance.  I don't know that I have ever had such a heavy one.  It's making up for lost time.

 

Love and hugs to all of you and thanks so much for encouraging me to share.  I sometimes worry maybe it's too much info, but I get such positive feedback.  Thank you for "listening."

 

Camari

 

PS  In addition to Delphi's kidney disease, hyperthyroidism, and high blood pressure, she now has a bit of arthritis, hence one more medication for her.  She takes more meds than her mom!  Her arthritis med is a capsule that we break open with tuna flavored medicine inside.  Yesterday, I was giving it to her in her food and eating nuts at the same time.  I spaced, popped the pill in my mouth and bit down, and instantly realized that nuts aren't usually tuna flavored.  Pretty disgusting, but Brian got a good laugh out of it!

 

I am a little belated in posting this as I have been home since Saturday, but I have just been dopey from the pain meds and pretty tired. 

 

We got an early start again last Wednesday morning.  I had been concerned because the mastectomy site from the previous week was looking a bit red, and if they had felt there was any chance I had an infection, the second reconstruction would have been delayed.  When the surgeon checked it out, though, he felt it was more skin irritation just healing from the surgery, so we proceeded.  Much like the first week, they had me in the OR by about 7:30am and I was off in la-la land.  I don't remember anything until about 7pm at which point I was in the ICU.  I woke up in such pain.  Apparently, the vessels in the gluteal donor site in the right side were even smaller than the ones from the left side, and they really had to do some digging around to find them.  The natural response of the muscles is to contract, and my whole butt and hip felt like they were in total spasm.  There was just no position the nurses could put me in to get comfortable, and I could not move myself at all.  It's hard feeling so helpless when you hurt so much. 

 

I remember coming in and out of consciousness with Brian sitting in a chair next to the bed.  I know it was another long day for him.  I think he left around 9:30 that night but was not able to sleep at all after he got home.

 

Since I had so much itching from the dilaudid the previous week, they had decided to try morphine instead.  They had me hooked up so I would automatically get a dose, and I could also push my little button every 8 minutes to get a dose.  It didn't matter how much I pushed that button, I was still in way too much pain.  About 3am I told the nurse I just couldn't take it anymore.  She gave me a larger dose right then, and also increased the dose I received each time I pushed the button and increased the frequency to every 6 minutes.  This finally gave me some relief and I woke up at one point realizing my pain was under control. 

 

By the next morning, the itching had already started.  It had taken a bit longer to start on the dilaudid.  It started getting so bad, they decided to give me benadryl every 6 hours.  Unfortunately, I only felt relief for about the first hour after the dose, so the next 5 hours were no fun. 

 

Brian spent quite a bit of time with me the next day.  He brought back the DVD player he'd bought and we watched some more episodes of the TV series Lost which we are really liking.    I was in the ICU until 5:30 that night because the regular floor had no beds open.  I only got out of bed once that day just to stand up for awhile.  Brian cautioned me to be careful of my IV, but right after I stood up, I felt liquid running down my hand, and sure enough, I had yanked it right out.  They got someone from the lab right up to put another one in so I wouldn't go too long without my infusion of morphine.

 

Thursday night was absolute hell with itching.  I started to feel I'd almost rather deal with the pain.  By the next morning, I had purple marks all over from where I had been clawing myself.  I had decided I would ask them to get me off of the morphine as soon as the doc came by for morning rounds.  They want to keep you on the continuous infusion with the push button for the first few days because you get the most pain relief.  But when he walked in the room, I burst into tears and begged him to get me off the morphine.  He approved it and it was the beginning of my turn around. 

 

My surgeon had said to anticipate being in the hospital for up to a week with the second surgery, but by Friday afternoon, I was feeling like a whole new person already.  I had been able to take a shower, had some friends come to visit who took walks with us up and down the hall, was eating solid food with no problem, and was sitting in my chair.  When my surgeon came by that evening, he was surprised at how fast I was recovering, and asked when I wanted to go home.  I told him "tomorrow," and he said that would be fine. 

 

One thing I had noticed right away was that the right breast looked quite a bit bigger than the left.  I knew some of that was due to swelling, but I asked the doc about it.  He said that they harvested the same amount of tissue from each side (and my butt does look very even), but the left reconstruction was more difficult.  Since I had radiation back in 1997, tissue in the area had been damaged, the skin was really thin, and he feels perhaps the plastic surgeon was more aggressive in removing all of the tissue since there was a known cancer there when she did the mastectomy last December.  In essence, the same amount of tissue had to make up for more of a loss on the left side than the right.  He felt that it was better to use all of the tissue they had harvested on the right side even though they could see it would end up being bigger, let things settle out for awhile, then we could evaluate doing some liposuction to even things out if needed.  If it turns out it's only a bit bigger once everything settles out, I will just leave it.  It's actually kind of cool to look at my chest and think "Wow I have some knockers!"

 

We were hardly getting anything out of the drain coming from the right breast, and I could clearly see it was swollen yesterday.  When I tapped it, it sounded like our waterbed when it got bubbles in it.  So I called yesterday, and they had me come in.  Sure enough, I had a bunch of fluid built up in the upper chest area.  They put a small seroma drain in, and it filled half the bulb immediately.  So now I am walking around with two drains from the right breast and a drain coming from each cheek.  I am quite the sexy sight.

 

I have been doing 12 percocet a day for the pain and still moving around like a little old lady, but finally today I feel the pain is starting to diminish.  I am cutting back on the amount of the pain meds now.  It'll be good to get off of them and not feel so blonde all the time.

 

I am definitely up for phone calls and visitors.  As doped up as I am, I cannot even think about doing Christmas cards, but thanks for all that we have received.  It's always good to hear from everybody.  I hope your holiday seasons are going great.  We are so looking forward to 2007!

 

Love and hugs to everyone

Hello everyone,

 

I am home and everything is going great! 

 

We left to go to the hospital early Wednesday because the roads had been icy, but they were clear and we were there by 4:30am.  I was prepped and ready to go into surgery by 7:30ish.  Everyone on the surgery team that I actually had a chance to meet was great.  General anesthesia is a strange beast.  I remember the anesthesiologist telling me she would take good care of me, then they were waking me up telling me the reconstruction on the left was done and they were getting ready to do the mastectomy on the right as soon as Dr Chao got there.  The next thing I knew they were telling me the mastectomy was done and I was in recovery - this was around 5:30 that night.  They moved me to the ICU, and I was still in a complete fog until after midnight.  I do remember my dear friend (and oncology nurse through both cancers) Patti there and of course Brian.  He later told me I was so groggy he didn't think I would remember anything.  I know it was a long, long day for him.

 

They gave me one of those little buttons you can push for pain medicine, and they said I could push it every 8 minutes.  I was not using it enough at first and let the pain build up a bit too much, and it felt awful to move.  Still, I recovered quickly and was out of the ICU by 11:30 the next morning.  They said it normally takes women with this surgery 24 hours to be out of ICU, so that was good.  I was up walking around (gingerly) that day, got the catheter removed and had the pleasure of a clear liquid diet.  Yummy stuff.  By the next day, I had the pain managed better and was feeling quite well, so the doc said I could leave on Saturday.  They switched me over to the oral pain meds and got me eating solid food again.  The rest of the stay was uneventful other than a mild allergic reaction to the first pain med, so they will give me something else next week.  Brian bought me a portable DVD player, and I watched some episodes of Grey's Anatomy.  I had resisted doing this, but it was a great form of entertainment.  Next week I will catch up on some chick flicks.

 

The breast surgeon from Group Health came by on her day off to give me some good news - they found no evidence of cancer in the right breast tissue she had removed!  Yee Ha!  I wasn't worried about it, but it was still good news to hear.

 

Now the part we all REALLY want to know - what do I think of the new boob.  It's WONDERFUL!  I was too out of it to even look at it until the day after the surgery, and I had seen photos of this surgery before, so as far as the scarring I knew what to expect.  But I was very pleasantly surprised by how good I thought it looked.  I honestly feel mine is the best one I've seen.  The butt scar (in the crease) is pretty long, but as far as the shape it just seems to have smoothed it out a bit.  What more could you ask for getting a butt reduction and new boobs at the same time. 

 

The plastic surgeon did bring up a funny point - he commented on the fact that I went into surgery with one breast and came out with one - just a different side.  So for this week I am still a Uniboober, but after next week you can call me Butt Jugs.

 

I appreciated all the calls and visitors.  I really am a lucky lady to have such good friends and family to help Brian and I get through these times.  They expect the next stay to be longer because my body has already been through a long day of anesthesia and is healing from surgery, so he said to expect up to a week.  Once I am out of the ICU, I can have my cell phone on and have visitors, so feel free to drop by or call me at 425-239-7702.  Just beware - I have become quite the exhibitionist!