Saturday, October 25, 2008

So here we are

SO, here we are. I am still NED (No Evidence of Disease).
I've gained some weight back. I weighed 164 at last count. I don't eat meat anymore. I'm back to a full-time life.

Here are the latest pics of me taken this summer 2008. I'm pleased with how things turned out. Not too fond of the nipple tattoo on the left breast, but I'm not stressed about it.

I'm glad I had DIEP flap reconstruction. My husband and I always joke that it took three women to save my life - my surgical oncologist Dr. Nancy Markus, my oncologist Dr. Chitra Rajagopal, and my radiation oncologist Dr. Anu Singh, but it took a man to build me a primo rack, Dr. Navin Singh.
I have many blessings, and I am mindful of each one everyday. When Dr. Singh asked me what I wanted with this surgery I said, "My breasts have always pouted. They've always looked at the ground, so sad. I want to wake up in the morning and have my size C-cup breasts look up at the sun and say, 'Thank you! Thank you for another day without cancer!'"
Now they do!

Thanks for reading my blog.

DIEP Reconstruction: The Sequel

The following May 2007, I was scheduled for the second of the surgeries to complete my reconstruction. Dr. Singh assured me it would be an easy "In-and-Out" surgery. Belive me, NO surgery is ever easy, and there is no such thing as 'in-and-out' when it comes to cutting into your grill. He told me I'd be off of work for a week. Foolishly I assumed this would also mean I'd only be out of riding and exercising for a week as well. I later found out how misinformed I was.

Anyway, the purpose of this surgery: to lift the right breast to match the left breast and to reduce the left breast to match the right. Dr. Singh was also going to create a nipple on the left breast. Had I realized what a horror show that was going to look like, I would have declined.

Again, I arrived at the good Johns Hopkins hospital. However, no red carpet treatment for me this time! After the usual intake rigmarole, and the visits from the usual suspects, I had to walk - yes! WALK - myself into the surgery room. I was like, "WTF? Is this like budget-class surgery? Do I have to hook myself up to the machines?" I had to hop onto the table myself and get myself situated! Where was my doting nurse holding my hand as I drifted off to la-la land? Where were the soothing voices and the kind smiles and gurney ride where I got to count ceiling tiles until I passed out?

DH says this time surgery took about two hours. I woke up in the recovery room, feeling OK but terribly sleepy. I implored the nurse to let me sleep a bit longer but she said, "No, you have get ready to leave." What?

I just didn't understand the coldness this time. They were so lovely to me last time. Why the change? When I had the mastectomy (at a different hospital), where they took the breast off, I got to stay overnight. When I had the first reconstruction, I got to stay three whole nights! Now that they were adjusting the breast they put on, I had to get the hell out of there as soon as I could walk in a straight line? Why couldn't they just stick me in a corner somewhere and let me sleep off the grogginess for a while?

Only a week off of work this time, but as I found out the morning of the surgery, still another SIX weeks before I could ride or exercise.

In a way, I told Dr. Singh later, this surgery was more difficult than the first one. He said he didn't understand because it is just an "in-and-out" surgery. I said, "In and out for you, but I'm stuck on my butt again for another six weeks!" The next time I saw my radiation oncologist, who is Dr. Singh's wife, I told her it was frustrating because if he had told me what to expect, I would have been fine with it. I thought it was just a week off of school, a week off of riding and then back to normal. But in reality, it was, "Hold on there, Cowgirl! No, it's six weeks off of exercise and everything else, and now can you please leave out recovery room?"
On the ride home, DH took me for another vanilla milkshake to soothe my drugged, but rattled, senses.

Then there was the hideousness of the nipple. UGH! I was shocked at the nastiness that protruded from my left breast. It had been so round and smooth, and now it had this I-don't-know-what angry looking piece of hacked-up flesh sticking out of it. I even called up the nurse and asked if I could have it removed. She assured me it would heal smooth. My God, looking at that thing, I went right off of Tootsie Rolls.

Of course, had I been told what to expect, I would not have panicked. I was naive in that I didn't know enough to ask, "Hey, is that nipple you're going to construct gonna look like a half-chewed Tootsie Roll?" As I write this, the nipple is very, very small again and has healed almost back to completely smooth.
I also included a pic of my belly scar. Up until just recently (like in the last six months), the scar in my belly felt really tight, as if I had a twisted up towel inside me, stretching from one hip to the other. Also, I have a strange disconnect in my belly because when they took the fat flap, they pulled the rest of the belly and pulled it down like a window shade, relocating my belly button back to its normal spot. So now I have a slight scar circling my belly button, and when you touch my lower belly, I feel it in my upper belly. Make sense?
The right nipple still has normal sensation despite the surgery. That is a good thing. Wink-wink.

Take a look. Doesn't my right breast look so proud? She was so happy to get some attention too. She's lovely.
Notice the port is gone too. No more chemo! EVER!

The New Twins

The surgery takes a looong time. My husband says from the time he had to leave me in the pre-op area to the time he saw me post-op was about seven hours.

Pre-op a nurse came in and did an intake interview. She took my vitals and such and then she left me alone. I had changed into a thin robe and footies, and was given blankets to keep warm. I was instructed to remove all my jewelry. My husband already had my wedding rings. Being an old hand at this pre-op thing, I knew enough not to wear anything else so that was not an issue. I was given a ID bracelet and on my lymphedema arm they put a piece of medical tape with the words "NO PROCEDURES ON THIS ARM" written on on it.

After awhile, various people came in to see me - the head nurse for my surgery, the anethesiologist, and finally - the man himself, Dr. Singh! Her drew on my belly and my breast with a purple marker, notating whatever things he needed to know for when he began my surgery. My torso looked like a football playbook with all the dotted lines and Xs and such.
Finally, it was time to go to the show! They started the anesthesia as they wheeled my out of pre-op and I was out by the time I got the the surgical theatre. I remember nothing after that.
Here are a couple of pictures to show you the girls. What do you think? You can see the port above my right breast. It remained in because I was still taking Herceptin every three weeks. Also, you can't tell very well from the pic, but above my left breast there is an indentation where they did a small rib resection in order to attach the blood supply to my new breast. I still have that dent.

I was soooo drugged when I came out of surgery. And terribly thirsty, but they wouldn't give me any water or ice chips.

My husband came back to the recovery room to see me, and I can't tell you much about it. I do remember a couple of nurses arguing about something having to do with who was suppose to be staying with me, or moving me to my room, or something like that. I also do remember demanding to be allowed to pee, but they kept saying I had a catheter and I should relax and pee because the catheter would take care of it. Apparently I did not believe them and it took a while to get me to calm down.
You can see from the photos that the new breast is incredibly HUGE! It was like a Hummer to the Honda Accord I was carrying on the right. Ha!
In the hospital room, they wouldn't let me eat or drink. The nurses were incredibly attentive and came in every so often to give me meds, to check the pulse in the new breast, empty my drains (two) or to generally check on me. I had a morphine pump and I was allowed to dose myself with pain meds when I needed it - up to a point of course. So they would not give me food, but they did let me have all the drugs I wanted.
I stayed in the hospital for three nights. I was allowed to eat a small meal late on Wednesday evening - the day of my surgery - and I was allowed a proper meal on Thanksgiving day. I was given a paper list all the foods on that day's menu and you're suppose to circle what you'd like to eat for the day. I found it hard to get comfy in the bed because of course, I had no way of pulling myself up because I couldn't use my abs. You really understand what you're core does for you when you can't use it!
I also had these wrappy-type pillows on my lower legs that would inflate and deflate. I was told they were to prevent an embolism from forming in my legs. They were irritating. I would rachet the bed back and forth until I was upright and then I'd take the pillows off and itch my legs, then put them back on before being caught by the nurse.
Now I don't remember exactly, but it seems to me I kept asking them to take the catheter out and could I please take a shower in the bathroom (it had a stool you could sit on and wash yourself). No, no, and no, was what they kept saying, but a nurse did come in and give me a sponge bath. I felt so bad that she was stuck washing me like I was some big baby. But the bath did make me feel better.
On Friday, the catheter was taken out. Hooray! Finally! Well, until I had to really go to the bathroom and couldn't get out of the bed because of the weakness in my belly! I didn't think I was gonna make it! It must have been comical for the fly on the wall watching my frantic pressing of buttons on the the the bed adjuster thingy to try and get out of the bed before I had an accident. The whole time I was thinking, "Son-of-bitch, after everything I've been through, I'll be damned if I wet the bed..." I made it just in time. Whew!
While in the bathroom, I took time to admire my oh-so-flat belly. Something I had craved my whole life was finally mine! It looked strange on me - a flat belly. I had a hip-to-hip incision that had been closed with some type of surgical glue - no stitches. I couldn't stand up straight. My belly was tight, tight, tight.

On Saturday, my husband finally rolled in about 2 p.m. to take me home. Again, I had two drains to tend to while at home. I fastened them to my pants with safety pins. He took me to Dairy Queen for a vanilla shake, which I was craving, for some reason.
I don't remember being in a lot of pain, but I do remember having to take care and walk slowly. In fact, a physical therapist came to my room once and took me for a walk to make sure I could get up and down stairs safely. She also gave me a booklet of exercises she wanted to me to practice, which of course I didn't.
Oh, and maybe this is TMI, but after having my liquids limited, when it was finally time to 'get things moving again' in a manner of speaking, all I can say is, "YEEEOOOOOOWWWW!"
And P.S. Don't tell anyone, but I'm guessing I'm not the first person to fudge the figures on her drains to get the damn things taken out so I could get on with my life.

Pre-Op - November 2006

My DIEP flap surgery was scheduled for the day before Thanksgiving 2006.

Now was the time to get back into shape and lose the weight I had gained during treatment. I got back into my diet/exercise routine. Over the next six months (June 2006 - November 2006), I lost the 17 pounds I gained during my treatment plus another twenty or so pounds. My goal was 150 pounds. I had started out at 187 and my pre-surgery weight was 153. No matter though - I still had a substantial belly to donate to becoming my new breast!

The pic shows my mastectomy scar. It goes around under my arm a bit. There are also two tiny circular scars under my arm where the drains were.

You can also see the target tattoos from the radiation. They're the little black dots.


This blog is for any woman considering a DIEP flap reconstruction following mastectomy and breast cancer treatment. I hope you find the info and pictures here interesting and informative. I will tell you about my experiences with this surgery and answer what questions I can. However, I am not a doctor and would encourage any woman thinking about having this surgery to talk with her oncologist and other doctors.

Thanks for visiting!

Now, a little (actually a lot) about me...

On September 11, 2005, I was taking a shower and felt a lump in my left breast. It felt about the size of an egg. The more I felt it, the larger it seemed to get. Before long, I was sure I had a bowling ball inside my breast!

Very long story made shorter, after several doctor appointments, seemingly endless tests (mammogram, MRI, CT scans, etc.), and filling out endless sets of paperwork, I was finally diagnosed with Stage III invasive breast cancer. Not only did this mean the cancer was very aggressive, but an escape attempt had been made by the cancer to get out into my body through my lymph nodes.

What did this mean for me? Within two weeks of finding the lump I began the very real (and very surreal) experience of breast cancer treament.

My first surgery was for the placement of a port in my chest, just under my right clavicle. The port was for the administration of chemo. The next day I began pre-adjuvant chemotherapy. The hope was to shrink the tumor down as much as possible before my mastectomy.

I received 6 cycles of two drugs - Cytoxin and Adriamycin. I would receive the AC combo on one day, come in the next day for an injection of Neulasta (to stimulate white blood cell production) and then return two weeks later for another dose of AC.

I lost my hair - ALL my hair (heehee - yes, I lost that hair too...) shocking, yes, but to tell you the truth, it made taking a shower absolutely a breeze - 5 minutes in and out! No shaving, no messing with hair stying, etc. I had funny tastes in my mouth. I stopped exercising, but continued to ride my horse. I never threw up (I was given powerful antimetics for that). I felt tired. I slept a lot. I gained weight (17 pounds). I wore beautiful scarves to cover my head. I went to work when I could, and took days off when I needed to (and didn't apologize for it, 'though I did feel a bit guilty...but not much. Hee.)

After AC, I began weekly treatments of TH - Taxotere and Herceptin. After AC, these two drugs were a walk in the park. No side effects. No side effects! A dream! My hair started to grow back. I was still tired but was able to work full time, only taking a half a day off once a week for my chemo.

In January 2006, I had a modified radical mastectomy on my left breast. I spent a night in the hospital and went home the next day. The following week I was back to doing laundry, my favorite pasttime (hee). However, I had to take six weeks off work plus no exercising (except gentle stretching and such to return the range of motion to my left side) and no riding. I had two drains under my arm that needed to be emptied three or four times a day. When the liquid being drained off reduced to less than 10 ml combined for the entire day, the drains could come out. I continued to receive weekly doses of TH.

Because nine lymph nodes were removed from my left arm, I am now at risk for a disease called lymphedema, which is when the affected limb can become painfully swollen and infected. It is incurable but things can be done to prevent it. I will be at risk for it the rest of my life. Lymphedema is unpredictable and irreversible. I wear a medical bracelet on my left wrist that has my name and the instructions of "No blood pressure, no needle sticks" engraved on it.

The T part of TH went on for ten doses. The H part continued for another year - yep, a whole 'nother year. Every three weeks, I would return to my oncologist for Herceptin.

In Feb 2006, I visited Dr. Navin Singh at Johns Hopkins University to consult about reconstruction. I had chosen to have a DIEP flap reconstruction. I chose this over a TRAM flap procedure because the DIEP flap is a completely free-flap surgery. With a TRAM flap reconstruction, there is a risk of herniation at the surgery site on the belly (because muscle is still attached to the flap), and with my riding and exercising, I didn't want to take the risk of that happening.

In March 2006, I started 33 daily doses of radiation (5x per week, M-F). I had ballooned up to 187 pounds. I am only 5'3". I felt like a cow. My hair grew back intensely curly, which I hated at first, but then grew to love. Although I wanted to go back to work half-time (becuse I was rapidly running out of sick time), the TPTB at my job would not allow me to return at all, so I was forced off for another six weeks. During radiation, it seemed like I was constantly sleeping. My skin tolerated the radiation well, but I stopped riding after the first 28 or so treatments because my skin began to show sensitivity. I used creams and gels provided by the doctor the maintain the heath of the skin.

Did I mention that my radiation oncologist is married to my plastic surgeon?


It is now Oct 2008. I am off all drugs. I continue to see my doctors periodically for tests to make sure I am NED - No Evidence of Disease.