Hi Y'all!

So sorry I've been absent of late. School and work have kept me incredibly busy over the last few months, but I've finally come up for air. Last semester was only 8 weeks long, but it felt like an eternity! I've been killing two birds with one stone though. Johns Hopkins is allowing me to submit a grant proposal as my capstone project (masters thesis.) This works out great because Career Puppy is applying for a federal grant. So I've spent the last several months putting the grant together; a feat I do not wish on anyone! Do you know you have to learn an entirely NEW language just to write a federal grant?! Because no one speaks english they way they expect you to write this thing!! I'll spare you all of the gory details, but after much blood, sweat, and tears, we finally submitted it this past week. Ahhhhhhh..... What a gorilla off my back! Now we just have to wait 5 months to see if we got it.

This semester is going much better. I only need 6 credits to graduate in May, so I'm considered half-time at school. A breeze compared to the last few months. I'll be presenting my capstone to students and faculty on May 9th (send good vibes my way...) Graduation is just around the corner too on May 20th and 21st. I can't believe it is finally here. I look back to Jan. 06 and can't even fathom how much has passed through my life since then.

Oh yes, and if you happen to be anywhere near on Saturday, May 23rd, my lovely husband is having a graduation party for me that day. Come one, come all!! I'd love to celebrate with every one of you!

An Historic Day

I'll get all the negative stuff out of the way... It was frigid, there were unreal lines to wait in, and I walked no less than 10 miles and did about 12 hours of aerobics (to keep warm!) But all of that paled in comparison to be a witness to history.

This all started last Saturday. I was editing video when I got a phone call. Caller I.D. said the call was from the U.S. Government. "Oh lawd! What has Gary done now?" I thought! I decided to answer and it was the congressional office of Steny Hoyer (our congressman) asking if we wanted 2 tickets for the inauguration. Uhhhh, no? DUUUHHH! OF COURSE!!! I know you are asking HOW on earth the phone call came to US? Right after Obama was declared the winner of the election, Gar called our senators and Hoyer's office and requested tickets. Hoyer's aide, Fallon told us we would have to go down to his DC office to pick them up Monday.

Our dear friend Laura had come up Saturday for a long weekend for a quick visit. She originally was going to leave Tuesday morning to go back home to Charleston. But after considering the historic events about to unfold, she told us she'd be staying for the inauguration. I told her we'd gotten tickets and she said she would just go to the un-ticketed area. Gary, being the King of Schmooze was somehow able to get Hoyer's aide to give us a third ticket!! So all three of us were able to get in the 'exclusive' Silver ticket area with the other 200,000 lucky ones.

The day started at 4 AM. We'd left the house by 5:15 and were on the Metro by 6 (click link for photo.) There were hardly any lines (YET!) Until we got off the Metro. We waited almost an hour to get out of the station. (Photo.) But everyone around us was excited about the day and when we emerged from the Metro, the Capitol building was beautiful. We walked about 2 miles to find our gate to enter, but then had to walk about 3 miles back from where we had come just to get to the end of the line. Oh well... By now it was 7:30. By 8 AM they'd opened the gates and we were moving. I think we got through security and had found a spot we were happy with by around 9:20. We were dead center of the Capitol steps about midway back in the reserved Silver section behind the reflecting pool. AND we had a great view of the Jumbo-tron. We were pretty far back, but closer than about 1.8 million other people. We got to know the people around us and the mood was absolutely jubilant! At 10 AM the music started and by this time we were popsicles! I'd brought lots of air activated hand and body warmers. They did get somewhat warm, but we all agreed that they did little to bring back the feeling in our frozen parts!

I won't describe the inauguration, because unless you were on Mars you likely saw it. I can only try to describe the thunder of gloved and mittened hands that echoed through the mall like a slow wave. The deep growling sound absolutely dwarfed the cannon's they fired after Obama took the oath of office. The crowd was so electrified that there was noise and whoops of excitement all throughout the day; except for when Yo Yo Ma and the quartet played 'Simple Gifts.' Everyone was completely mesmerized! The sun had just come out and the warmth on our faces and the sweetness of the music held everyone completely transfixed! You could have heard a pin drop! It was surreal!!

When Obama was sworn in, the crowd went absolutely wild. People were crying and laughing, hugging and kissing each other... It was like New Year's Eve, Superbowl, the Olympics, and the birth of a child all at once!!

We met people from Virginia, North Carolina, Florida, New York, California, Tennessee, Maryland, Michigan, D.C., Arizona, Pennsylvania, Ohio, Alabama, Texas, Nebraska, Washington State, and even Spain, Holland, and Bermuda! We formed a bond with everyone we met and the people around us became my 'Inauguration Family.' But at the end, we shook hands, hugged, and said goodbye.

Getting out was crazy. You just had to go with the river of people. We had to part ways with Gary. The nut had to do a night shift, so he was going to make his way to the hospital and try to nap before his shift. He had to walk half way to the hospital before catching a cab the rest of the way. Laura and I made our way to the Metro, but we learned early on that they'd closed the station we'd come in to, so we had to head east to the next station over. By the time we arrived, the line was absolutely wicked! We found a Thai restaurant nearby and waited in line an hour to get in. By this time, I was beyond popsicle status. My feet, hands and face were completely frozen and in pain, by back hurt from standing for 8 hours straight, and every muscle hurt from all the walking, dancing, marching in place and other aerobics in my futile attempt to keep warm. Oh, but when we got in and sat down, joy of joys!! A warm seat, hot tea, and delicious lemongrass soup (some of the best I've ever had!!) An hour later, our bellies full, and skin partially thawed, we headed back out to walk about 100 yards back to the Metro. There was still a line, but not nearly as daunting as before. Mercifully, we were on the Metro within 15 minutes and back to our car within the hour.

We walked in the door at home at 5:20. I couldn't wait to get a hot shower and get into jammies and rewatch the festivities id recorded from TV. I think I was out cold by 9 PM and in bed by 10. I didn't even make it through the pre-inauguration yammering of talking heads and still have yet to view the swearing in on T.V. I'm completely in recovery today and feel like I did after my 14 hour surgery. I'm a little wind-burned, still a little dehydrated, a little sore and tired, but it was ALL worth it. I'd do it all over again tomorrow!!

No, I've not been kidnapped by gypsies...

...Contrary to popular belief, I'm sure! It has just been a very busy Summer and Fall. So much has happened that I barely know where to begin.

First, I suppose, my health. Energy is nearly back to normal, but there are day's I just must nap to get to the end of the day. The scars are fading slowly, but that is to be expected. About 10 days ago, I had my nipples and areoli tattooed (or as my friend Jenny said 'tittooed.') The skin is still in recovery stage, but I think it is really looking great. Once the scars fade I really think that one will be hard pressed to notice I had a double mastectomy.

As of September, we entered into the period of anniversary's. Mom was diagnosed September 4th, and for some reason, I have a keen memory of the date of every appointment, every milestone, every set-back. Thursday 10/9 was her birthday. As in all of these 'anniversary's' my heart was heavy with the pain of missing her, but so many of the good memories came also. I miss her so much that sometimes the feeling is visceral.

The flip side is I have been so busy that I haven't been able to sit around and mope much. I returned to school this semester; if you can call it that. I am taking a 1 credit class -- barely enough to even qualify as attending. But since I'd been away for a year, I met with my academic adviser. We caught up on all of the things going on with me, including the new business I've started with my partner Gwen. For the last 8 months or so, we've been working on developing a career guidance and mentoring website. It will be unlike anything that exists on the web. The actual site is currently in development and we should go live early next year. I spoke with my adviser about how it could be used to help under-served kids that don't know the full extent of their career options and don't have any career mentors. Long story short, I am going to be able to do research in this regard and can earn up to 20 credits towards my degree!! This means I can graduate this May! Plus it will advance the business and help kids also. It is a win-win all the way around.

So, yesterday was my last day at my 'paying' job. I submitted my resignation a few weeks ago. As of next semester (which starts in less than 2 weeks) I'll return to school full-time and work on the business full-time. I couldn't do 3 full-time activities... there just aren't enough hours. Leaving my job was a very difficult decision. They have been so wonderful and supportive over the last year; not to mention leaving a paying position in the midst of one of the worst economic downturns in recent memory (or, potentially EVER!) It's a little scary. But the timing was right, Gary is supportive as ever, and I just had to go for it. Sometimes, when you are standing at the edge of the cliff, you just have to push off as hard as you can and hope your wings work. I'm ready to soar.

Mom... the Finale

Gary and I left last Friday headed for Key West. Our main objective was to dispatch mom's ashes to the place she loved so much. I initially thought the worst was behind me and that this was merely a formality. However, the closer our plane got to the Key's, the more nauseated I became. I was a complete bundle of nerves by the time we landed. It wasn't only our task at hand that was eating at me. This was the first time in 13 years I'd stepped foot on the island. I grew up loving this place so much, but was saddened and disgusted at how it had developed when I'd last seen it. I was worried I wouldn't even recognize the place. Also, our dear family friend Pat was letting us stay at her house (now a vacation rental and place for family and friends to stay.) Her place, as fate would have it, lay squarely in between the house I grew up in and the one Mom and my step-dad Gerry moved into after I left for college. I wasn't exactly certain how my emotions were going to respond.

I spent the entire drive gasping and marveling all the way to the house. True, so much had changed. Many things were gone, new businesses, buildings or condos in their place. But in the short ride out to the house things weren't as bad as I'd envisioned. Strangely, everything in the old neighborhood looked much smaller than before... Isn't that always the way it is when you go back to the place you grew up.

My friend Fish drove down from Naples to spend the weekend with us. He arrived moments after we did. We got settled into the house and decided to head out for dinner.

A friend of mine from high school (Rich) told me several months ago that the class of '83 was having their high school reunion the weekend I was down and invited me to 'crash' the cocktail party. I wasn't sure if we were going to, so I didn't commit, but we decided 'why not' at the last minute. Initially Rich had said not many people were going to be there. Even though I was 2 years behind him in school I had many friends in that class, but it never crossed my mind I'd see anyone other that him and his wife Paula there. What a terrific surprise! I saw several people there that I knew, but the best was two of my dear friends Kathy and Beth! I think they were just as surprised to see me. Rich hadn't told them I might be coming. It was hilarious walking up to them with this grin on my face. Both of them had this 'I-know-I-know-you-but-I'm-just-not-sure-who-you-are' look. Then BAM! The light bulb went off. It was fabulous catching up on old and new times.

On Saturday, Gary, Fish and I did a most unusual ritual with mom's ashes. We took her on the 'Duval Crawl' as the locals call it. Normally this refers to a pub crawl along the main drag of Key West. We decided to hit all of her favorite places along the drag. I'm completely convinced that she would have loved the absolute absurdity of it and was smiling down the entire day. We went to her favorite places starting at La Te Da, had a great brunch next to the pool, and ran into Kathy and her husband Steve. We snapped a shot of me and mom in front of the "White House" (now a Key Lime Pie store) where she had her hair cut for years. Next we cruised on down to Fast Buck Freddies, the best (but not cheapest) shopping in the known universe. (Also my second place of employment where I wrapped presents for celebrities and dusted every single one of the 10 billion chochkies in the place my senior year in high school.) After that we slid on into Margaritaville, previously known as Del Rio's back in the day. This is where Jimmy Buffett used to perform before he "grew older; not up." Mom and I were known to frequent the place from time to time. I think the picture says it all. (See slideshow below.)

Sunday we headed out to 'return mom to the earth' as Beth so eloquently put it. The neighbor across the street Tracy offered his boat for the event and he, Pat, Fish, Gary, Beth and I headed out around mid-afternoon. Originally I thought I wanted to put her to rest in what we call the 'back country;' the islands to the west in the Gulf. But is was a little rough, so we went about a mile off shore from the old neighborhood towards the Atlantic.

Mom loved "The Prophet" by Kahlil Gibran. Shortly before we went to Key West, I found the book given to her by her dear friend Carole Anne many, many years ago. I read the following:

Farewell to you and the youth I have spent with you.
It was but yesterday we met in a dream.
You have sung to me in my aloneness, and I of your longings have built a tower in the sky.
But now our sleep has fled and our dream is over, and it is no longer dawn.
The noontide is upon us and our half waking has turned to fuller day, and we must part.
If in the twilight of memory we should meet once more, we shall speak again together
and you shall sing to me a deeper song.
And if our hands should meet in another dream we shall build another tower in the sky.

I slipped the water soluble envelop that held her ashes into the water. It bobbed gently on the waves and we all let the wind catch rose pedals that settled beside her. Tracy maneuvered the boat in circles around the flowers and ashes for several minutes until they sank beneath the waves. We then popped a bottle of mom's favorite champagne and toasted her wonderful life.

I really hadn't planned any of it. Granted I got the rose pedals and the champagne, but I really wanted it to just unfold. And it did; beautifully. We spent the rest of the afternoon at the local marina bar having a wonderful time, just as mom would have.



The rest of the time in Key West was great. I'd managed to work through my nerves by Saturday and quickly slipped back into island time. No multi-tasking; no watches or clocks! We didn't really plan one day to the next and had a great time doing it. We were able to spend time with friends both old and new.

Strange that I couldn't put my finger on my emotions after letting go of mom's ashes. I was very emotional reading from "The Prophet," but immediately after, I was empty; no, maybe placid is the word. Not in a negative way, not even in a positive way. I didn't even feel a sense of "closure." It was just simply done; finis. I suppose there is a peace to having that.

Circus Moves to a New Town... (Not Really)

The week has been a blur. We got in to the new place last Friday afternoon and began taping the walls for our weekend long paint-a-thon. The beach bungalow was in pretty bad shape; I don't think it had been painted in at least 20 years. But by Monday afternoon, we'd finished for the most part. We decided to leave the hallway for later since it is so narrow and the movers were certain to 'ding' the walls. But oh what fun this place is. We picked Caribbean colors that sound atrocious, but are really perfect. Light chartreuse for the living room, aqua for the kitchen and dining room, coral for the office, a sea glass green for the bathrooms, and a light khaki green for the bedrooms (not really tropical, but it works with the decor.)

At the crack of 10 on Tuesday the movers showed up. God, we have a lot of crap! We've paired down a lot, but I honestly wonder why we "need" all that we have. Of course, I go through this every time we move, but once the stuff is stowed away, out of sight; out of mind until we need (fill in the blank...) Unpacking this time has been a little slower that our usual pace. I've been trying to take it easy and not wear myself out. But believe me, it is very easy to sit down and stair out the wall of windows facing the Chesapeake. I though our last place had a nice view... Not even close to this!! The weather has been fantastic (breezy and very comfortable) so I open all the windows and doors in the morning and let the air come.

Gary has had to work the last couple of days, so I've been on my own. But the man is a powerhouse. I have no idea where he gets his endless energy. He's my hero. I'm normally pretty anxious to get everything unpacked. I really hate living in such disarray, but it'll get done when it gets done. Mom has so been on my mind. I keep thinking I want to pick up the phone and tell her all about the new place. She would have loved it here. She was a beach bum like me.

Stormy Weather

The weather Mothers Day was much like my mood, dark and gloomy. The rain held off until later in the day, but as I worked in the office on the third floor I could see the waves continuing to build. By early afternoon they were crashing over the jersey barriers that separate Atlantic Ave. from the Chesapeake Bay.

At 7pm, I decided to give office work a rest and went downstairs for dinner and a movie. The rain was really coming down by then, driven sideways by the gusts of wind. At one point around 8pm, during the early scenes in Transformers I looked out on 9th street to see only water. Hmmm. I'd only seen the street fill with water once last winter when I was recovering. I tried to go back to the movie, but I kept looking outside. Every few minutes it had grown even higher. I went out on the porch to take a look. My neighbors were peeking outside their door. "You okay?" I replied I was fine, just marveling at how FAST it was rising. They live in a single story. "You gonna stay?" I told them I planned on staying. I had 3 dogs and 3 stories, so I could probably weather it okay. A few minutes later they were wading to their cars and headed to higher ground the wrong way up a one way street. Ironically, Atlantic Ave. that runs right along the water stays drier than 9th Street.

Within 1 hour the water had risen to the second step of the house. The wind was wild, but I've been in worse having grown up in Key West and weathered a few hurricanes. I called Gary who was at work to warn him that he may need to wade home. He was due to get off at 11pm. I went to bed at 11:30 but didn't sleep particularly soundly. I was more concerned about Gary making it home safely. At 12:30 we lost power. But luckily the house is equipped with a generator. Oh wait! That only runs the 3rd floor of the garage apartment. Joy. So now I get to try and sleep with a generator wailing outside my bedroom window, no electricity, wind howling, and about 150 lbs. of shaking, panting, scared furry children laying right on top of me. Gar managed to make it home just after 1am. Oh, and did I mention the security light on the garage apartment that kept going on and off ALL NIGHT LONG right into the bedroom!!! The blinds were no match, so we tacked up a thick blanket over the window.

The alarm went off at 5:30 (I had set it in hopes of making it to work...) Nice to know my new alarm works even when there is no electricity. I went down to assess the situation. Waters hadn't receded. (This shot is looking away from the bay up 9th Street. ) No power still. Oh No! That means no coffee!!! Thank God for extension cords. We strung one from Mark's apartment on the 3rd floor down so we could power the coffee pot. He didn't have any coffee, so it was a good trade. Power for a cup a' jo. After that we could at least plug in the fridge so we wouldn't lose all the food.

The poor pups had a heck of a time trying to figure out where to go to the bathroom. Poor Hudson mistook floating wood chips for terra firma and went trudging right off the deck for an impromptu swim. Talk about a wake up call.

The shot to the left is our neighbor Mark braving the cold waters. He walked out in the middle of 9th St. to look at an abandoned car that didn't quite make it through. It was a nice Kodak moment.

The absolute photo op of the day was when a mallard came swimming up 9th Street. This was totally priceless. He clearly was not daunted one bit by all this water and floating crap and seems to be completely enjoying himself. I've left the picture kind of large. If you look very closely he is in the center of the shot. This is looking out from the porch onto the parking pad... I mean parking pool.

The power was restored yesterday and the water receded in the afternoon as quickly as it came in. There is a huge mess to clean up. The landlord had just put fresh wood chips down and they are now everywhere EXCEPT where they are supposed to be. The car is running fine (I was a little worried there for a while.) The ducks have returned to the pond and the pup's are very happy to have grass to pee in again. All is well now. The adventure never ends!

As Promised...

Below is the link to the commercial that was shot a few weeks ago for the UMMC Breast Center. Sadly, my "tree pose" ended up on the cutting room floor. Hmmm... wonder if that meant it wasn't very good?




They also did a story on the website in conjunction with the commercial. Click here to be linked to the story. Also take note of the picture they took. If you look over my shoulder, you'll see that lovely picture of mom staring back. How perfect!!

Fire Sale at the Big Top

Wanna know what I did for my birthday??? Had a garage sale. I know; it sounds like the epitome of fun. However, North Beach had a town-wide yard sale which was a perfect opportunity to 'down-size' all of our stuff before moving into the (much smaller) funky beach shack.

How does one get all that stuff? For a year we've had the largest sized warehouse that the local place leases. It's criminal. And before that we've had one in various places (Baltimore and Charleston before) for around 3 years. Maybe it's hereditary. Mom had a warehouse in Marathon Florida for over 20 years!! All during a time when we lived 50 miles away. When it was said and done she had to back up a dump truck to the door and empty the whole thing out. Anyway, I digress...

So we had this wicked large sale yesterday. Kudos to our neighbor Mark for letting us take over the garage to set everything up! It made life much more wonderful. Power to prove things worked (plus the absolutely necessary music), nice and shaded, and best of all when it was said and done we just closed the door. Fabulous!

Sadly, we've done a few of these before. Gary and I have differing pricing philosophies. His is to ask the highest price and hope it goes... Nothing really wrong with that. Mine though is to price it to go... Release all emotional attachment to the stuff and let it fly. This has worked in the past. We had an enormous barn sale when we lived in North Carolina. And let me tell you, those people are major yard salers!!! In a two-weekend sale, we made over $5,000!! And still had enough stuff to completely outfit the abused women's shelter.

We did very well this time; sold all the furniture and probably half of the stuff. People that came said we had the best sale in town - good prices and tons of stuff. One woman spent 2 hours and her car was absolutely bulging at the rivets when she pulled out. Several others returned with friends. Despite the good turn out we still have billions of kitchen gizmo's and enough clothes to start our own department store. We made over $600; not bad. It will pay for the movers. Today we'll pack the rest up and take it to the local charity thrift store.

My day wasn't all work. We joined our friends Aric and Gwen and some of their friends in Annapolis last night for sushi. Had a great time and some tasty fish. Drove home through a total deluge, crawled into bed and slept the sleep of the just.

Lights, Camera,,, Circus?

More insanity at the circus. The powers that be at the University of Maryland Medical Center Breast Cancer Center somehow got it in their heads that I would be a good subject to make a TV advertisement about. Okaaaayyyy... The weeks approaching the shoot were rather hilarious. My super-wonderful colleague in charge of the shoot, Denise, informed me that I would be given several questions about my experience plus they would film me doing an activity that my recovery is allowing me to do.

Hmmmm. What in the world do the brand ta ta's enable me to do now. I joked with her for weeks that now I can enter wet tee shirt contests or take up pole dancing. But I'm not sure the head of the cancer center would appreciate that hobby. Oh! Sailing!! Now I can go sailing again. That's perfect. But the shooting schedule didn't allow the camera crew to drive an hour to get to the boat let alone the time it would take to go out on it.

Denise kept probing, "What other activities do you do?" "Well, I walk the dogs." She just looked at me. "Hey, if you knew my dogs, you'd understand that it's a complete workout!" Again, logistical issues of time and travel were an issue. Moving on.

I like to garden. Again, not something in which I actively use my breasts, but it's physical. Great. We are in downtown Baltimore and the only acceptable green patch is in front of the medical school. I think if I moseyed up and started digging up their tulips I'd probably be arrested. Next.

"Hey, I knit! And I've gotten really fast since my surgery!" I've never seen anyone roll their eyes that far back in their head. "Great! Your 40 and we have you knitting, Grandma. This is supposed to show how you've gotten back into activities. You know; like being active." Oh dear.

The problem is I was only cleared last Thursday to slowly resume lifting and activity. Yea, finally! But I haven't exercised or lifted since November, and now that I am cleared to do so I really see how much strength and flexibility I've lost. I've never in my life been this out of shape... No exaggeration. So much so that I'm not sure where to start without really hurting myself. Ah ha!!! That's it. I'll get back to doing yoga! It's been a while but it is self-paced and you do what you can and it builds strength and flexibility. Perfect. Denise loved the idea.

So once they have the commercial edited (a few weeks or so) I'll see if I can add it to the blog. You'll be able to see my best (albeit shaky) tree pose and warrior stance. Still workin' out that charlie-horse in my calf though.

The Circus is Packing Up

Much as I hate the act of moving (from house to house that is) Gary and I have decided to resettle once our lease is up at the end of May. Having moved twice since December of 2006, I've come to the conclusion that I'd rather have my wisdom teeth removed through my nostrils. But we discussed it and while we live in a great house now, we really need to pair down. Since mom is gone, this place is entirely too big for us. There is something kinda sad about waking up every morning and looking out of my bedroom into hers and seeing an empty bed. I absolutely refuse to close the doors; I would rather look into her room and feel a pinch of sadness than close off the memory all together.

We have no intention of leaving North Beach. Despite not being able to truly enjoy all this little 'burg has to offer over the past year, we've completely fallen in love with the place. For those who haven't been to 'Casa del Fuego' it is a great beach house built about 10 years ago, 2 rows off the water, a wonderful covered porch, hot tub, blah, blah, blah. But we've found a funky little beach bungalow build in 1928, right on the water, stunning views from the living and dining room, screened porch, excruciatingly small bedrooms (3 of them) and two, uh, really funky bathrooms (or were those closets?) And we plan to paint each one in funky beach colors. Can you say 'South Beach?'

After spending a year dealing with 'adult' problems, Gar and I need a year off. We need to have a little carefree adolescent time. This past year has been wrought with hardship, change and enormous growth. While I'd give anything to have mom back with us, I relish the growth that her illness and passing (along with my own cancer) have forced me to experience. I've learned more about myself over that time than in any other period of my life. Now Gary and I need a year of rest to let those seeds sow.

Moving Along

Things continue to progress on this end. All bandages and steri-strips are off now and most of the scabs have washed away. For the first time in 5 months the headlights are on (but nobody's home...) Get it? Sorry; bad joke.

Anyway, I've been pardoned from the penance of wearing the 'bra' for now, but I must still wear the binder. It's still a hate-hate relationship with the thing, but I'm a little more used to it now. Having proportionately larger hips than my waist means that I'm constantly pulling it down as it never fails to inch up my torso. And the itching, oh my lord!! Especially around my back at the lipo sites. At first I just thought it was the area healing, but I was a bad girl last night and took off the binder to sleep. Lo and behold, this morning I was 'itch-free.' It was wonderful!

I'm looking forward to getting back to life. My doctor told me I could not drive until this coming Monday, so I've been working from home all week. I sounds nice, but it's been a little frustrating that I feel perfectly fine to get out but I've been sequestered at home. The weather has been a little warmer here, so I've really enjoyed my daily walk to the post office.

On a more somber note, I've started going through Mom's things. I woke up yesterday and I knew I was ready, so I took the day off from work. Going through drawer after drawer, a wave of emotions washed over me. I went through all of the 'get well' and condolence cards sent. I reread every one. Laughter, sadness, pride in such wonderful friends and family went through me. I found pictures long forgotten, Mom's collections of everything from lapel pins and buttons to an unbelievable supply of stationary (the REALLY good stuff too...) I guess I have no excuse not to write anymore. And good lord! The SOCKS that woman had! I've only begun to get through it and there is still so much more to go. In some respects, it's a little sad doing it by myself, but it's very private and intimate and I can take the time I need to get through it. I feel her there with me, laughing and crying right along with me. Reliving all the memories.

Step by Step Improvement

A week has now gone by since surgery. I'm still sore and my torso looks (and feels) like I've been hit by a car. I'm moving much better. Walking a little down to the water and have been off pain medication since Wednesday. I'm still quite stiff though.

After that glorious shower the other day I decided to ditch the abdominal binder. It continually rides up and Dr. Rodriguez told me to wear it until the pain went away. I was sore, but not in excruciating pain, so as long as I was resting I left it off. Well I saw him yesterday. Gary had to work so I drove myself. Who thought that being in a car could be so uncomfortable. I guess this is my week to underestimate things...

They removed the stitches from my breasts. Wow, that man is an artist!! Absolutely amazing! The man-made stuff looks better than what I had before. Really! I still have steri-strips across the abdomen and heinous bruising across my chest and lower back, but it's already lost that eggplant purple hue and is starting to get that bruised banana look. Anyway, I'm to wear the binder AND the bra for several weeks. (Insert twisted frowning face here.) He explained that I will need to compress the outer layers of skin to the deeper tissue until they adhere. Oh, and no pressure on the nips either, so the 1950's Sears Catalog / Madonna inspired underwear is in my near future as well.

I can return to work Monday, but I can't drive which should be interesting as I live an hour commute 1-way to the office. Also no lifting of more than 5 lbs for 4 weeks. That's going to be a neat trick too considering my laptop weighs more than that. I can walk a do stairs so that's good.

So my surgical days are behind me. The last thing left to do are the tattoos. I've joked with friends that maybe I could do something interesting instead of just areoli... Maybe a daisy, or an 8-ball.

Post-op Day 3

To sum this surgery up in a simple phrase: grossly underestimated. My bad. I should have known that 3 hours (or what turned out to be 4 hours) of surgery was not going to be a walk in the park. I've had much more pain than I expected. Saturday I decided to take darvocet. I hate the way the oxycodone makes me feel. I was in pain most of the day, but not crippling pain. Strangely, I've had absolutely zero pain in my breasts where he did the most work. My abdominal incision hurt on Saturday somewhat, but the lipo sites in my back and where he did the fat grafts above my breasts have been excruciating.

I know, I know... Don't be a hero. Honestly, that's not what I was going for. So yesterday I took the oxycodone. Yup, that does the trick. No pain whatsoever. But oh my lord! I lost about 4 hours yesterday afternoon. Just wiped from my memory. Gary had to work and set everything up for me. Dinner was ready to go; all my pills around me; phone; everything. He even had the neighbors call to check on me (thanks Gwen & Aric!) Getting up was no problem because I wasn't hurting, but I had the where-with-all to focus through the drug induced haze. Good news is I wasn't wobbly on my feet.

Gar is home today. The doctor says I can shower (yea!) so that is my goal for today. Easy does it... easy does it.

Chillin' on the Couch

As you've no doubt read in Gary's message, the morning started heinously early. I drove so Gar could get a few more winks on the way to UMMC. Things seemed to move a little quicker in pre-op this time, but maybe that's because I had company. My friend who has been going through the same process was the next case after mine and was there early as well. So she came in and we compared notes and nerves. It was so reassuring to have someone there who new exactly what I had gone through and what I was about to go through.

They took me back at 7 am and once again I was staring at the two OR lamps above me. Then it was lights out. The surgery took about 4 hours. He removed the scar tissue from my abdominal incision and contoured the "dog ears" at the ends. He also took the cartilage 'stored' just under the skin in my breasts, shaped them and inserted them to give the appearance of a nipple. He also cut down on the size of the skin islands and pulled it tight so it will look round like an aereola. (I've had two friends who 'make stuff' tell me they could have crafted nipples for me in their shop... Ones that could shoot bullets! I do have strange friends!)

The one thing that had bugged me from the previous surgery (besides my manufactured love-handles, a.k.a 'dog ears') were the indentations left from where he removed the cartilage from my 5th ribs. Besides being unsightly, whenever I sneeze it would feel like my entire chest was going to come through that space. I've learned since to support the area with my hands when sneezing or coughing. Dr. Wonderful, of course, had a way to fix it. He told me that he was going to do liposuction on my real love-handles (again, I wasn't aware I HAD any!) and take the removed fat cells and insert them over the indentations to smooth things out. Okay, I must say that I am probably the only woman alive who has had fat removed with liposuction and then had it immediately replaced. Again I emerge with a net zero loss, just completely re-arranged. I'm starting to feel like Frankenstein, but rebuilt with all my own parts.

I emerged from the OR bound up like a Christmas goose. I'm wearing a Madonna-inspired bra. It looks like something out of the '50's (it is ENORMOUS), but the tips of the cups are cut out and I have gauze just laying over my nipples. I also have to wear an abdominal binder to help contour where they did the lipo on my back. So I haven't actually seen any of the work he did yet, and probably won't until Monday or so.

As far as discomfort, I was pretty woozie most of yesterday. The thing that hurt the worst was where he'd injected the fat into my chest. This morning my abdominal incision and areas that he lipo'd are hurting. I have a plethora of drugs to take, but the oxycodone he gave me really does a number on me, so I've downgraded myself to darvocet I have from last time. It seems to do the trick as long as I don't move that much.

My goal today is to rest up enough so I can be relatively independent for tomorrow. Sadly, Gary has to work. He has been so fabulous as always, getting every little thing for me, fluffing my pillows, feeding me... I got weepy last night when he was putting me to bed because I kept needing so many little things (I couldn't even reach to turn out the light.) He's done so much for me and all on little more than 1 hour sleep in something like 30 hours. He is such a rock star! I think I'll keep him.

Prepping for the Next Phase

This Friday I'll undergo the next phase of becoming the Bionic Woman. ("We can rebuild her.") It's not really that dramatic. Even though the surgery will be 3 hours and I'll need to be intubated, Dr. Rodriguez plans to do little more than four revisions; hence the lengthy operation time (refer to Dec. 27th post for what will be done.) It's funny, after a 13 hour surgery I'm sort of thumbing my nose at a mere 3 hours. But I've been reminded by a friend of mine who is a cardiac surgeon that there are far more serious surgeries that take much less time. True, but my surgeon won't have his hands deep inside my torso.

I'm scheduled as the first case which means that Gary and I need to leave the house at 4:30 AM - ouch! But I'll have a nice, fresh, rested doctor. I like it that way. I should be home in time for the evening news and hopefully we'll be able to beat Friday afternoon traffic. I'll be sure that a message gets sent out either by myself or Gar to update everyone. Dr. Rodriguez said I should be back to work no later than Wednesday. See. Piece o' cake!

One FLU over the Cuckoo's Nest

After a 13 hour surgery and having my "front end" rearranged, I didn't feel remotely as bad as I feel right now... As spring approached, I thought I had managed to successfully dodge the flu, but noooo. I got it bad. I've been on my back for 3 days with my fever peaking yesterday at over 103. Plus the other typical stuff that comes with the flu; aches, chills, cough, and a killer headache. This one is a real butt-kicker. If I even LOOK at another Gatorade I'm going to scream!!

As always, I have wonderful caretakers. Gary has waited on me hand and foot bringing me soup, medicine and picking up my 'snot rags' with tongs. The puppies have done their best to snuggle with me and keep me warm when I have the chills. I went to my doctor today. He confirmed what I knew to be true, said we were doing all the right stuff, and gave me a script for some high-powered cough medicine. That's what has worried me. I can feel the stuff down there, but it is as solid as tree bark and isn't moving at all. The last thing I need is to develop pneumonia so I wanted to get something to get it loosened up. After all, my follow up surgery is one month from today and I don't want anything to delay that!!

The Memorial

It was cloudy and cold, but the rain held off. All the preparations and rehearsals completed. Flowers delivered; keyboard set-up. As people entered, Don played piano. It was a large, but unusually cozy room. The front was a stage with a podium to the right with a large bouquet of colorful flowers. Centerstage was a large screen with ferns on either side and the keyboard and microphones on the left. The back wall of the room was glass overlooking the Japanese garden. In the back of the room, several cocktail tables set up for after the memorial.

Uncle Harry spoke first. (Link to remarks will be added soon.) He is mom's maternal uncle. He started off with a joke. It was an absolutely perfect way to set the tone of the day. At the end of his eulogy, he told a story of my grandfather. My grandfather used to own a tire shop and Uncle Harry worked there with him. He said that after my grandfather died and they were closing the shop, he was cleaning out the desk and found a bible. He remembered my grandfather pulling out the bible from time to time through the years and reading it. Nearly in tatters and held together by masking tape, Uncle Harry noticed that my mom's name was inside. He held onto the bible. And at the memorial, he had his son, my cousin Mark, present it to me. A very special and unexpected moment.

Next, Don -who came all the way from California- played a medley of some of Mom's favorite songs. Songs included tunes from Jimmy Buffett, Carly Simon, James Taylor and Billy Joel. Both upbeat and slower tunes were included. I'm sure Mom would have been singing along.

Ann Sheffield, self-described as "Carolyn's Oldest First Cousin," got up to speak. (Click here to read remarks.) Most were memories from early in Mom's life. Ann definitely illustrated what a spirited, funny kid Mom was.

Then Sandra Wheeler (or Sandolly as I call her) spoke next. (Click here to read remarks.) She is Mom's longest (I dare not say "oldest") friend. They were best friends for over 52 years! Her comments were just amazing and I really have no idea how she got through them without going to pieces. I know I didn't. I was just fine until she got to the part about me.

Then Ava (a.k.a. Bebe, one of the Diva Losers) sang a beautiful song "See My Face" while being accompanied by Don. (Click to listen.) It was incredible and everyone is still talking about it.

Aunt Nell was the next person to give her recollections. (Click here to read remarks.) Memories from her spanned mom's life. And she has a way with words. She managed to talk about Mom, my grandparents, Gary, and even Ripley!

Next came something I put together called "Remembering Carolyn - A Photographic Journey." Before I returned to work, I'd started going through all of Mom's photos. I wanted to put together a retrospective of her life. I picked only the good pictures which numbered into the hundreds!! With the help of friends and family I was able to shave the pile down. The presentation is still about 10 minutes long, but if you don't connect with any other link in this post, you'll certainly want to see this. It truly shows what a vibrant, fun, and complex person she was. From her love of 'dressing up', to her days as a hunter, to the time she made an arrested landing on an aircraft carrier; she honestly had a remarkable life. (Click here and be sure your volume is 'on.')

Appropriately so, Don followed the photos with the playing of "Margaritaville" by Jimmy Buffett. The audience joined in the sing-a-long and before it was said and done, the four Diva Losers were on stage singing right along. I'm sure Mom was right there in her mardi gras beads singing word.

I then gave a few remarks. (Click here to read remarks.) I honestly don't remember much about it. I tend to have on-stage amnesia and usually get through things okay, but never have much of a recollection about it afterwards.

The 'show' was concluded when Don and the Diva's all performed a lovely a capella piece called "The Lord Bless You and Keep You." The four part harmony was beautiful and the sentiment was perfect. When I was in the choir in high school, Mom was a major supporter and fund-raiser. We ended every concert with this piece and she absolutely loved it. I thought it would be perfect to end the memorial with it too.

Everyone then enjoyed the fabulous spread of fruits, cheeses, and desserts. Oh, and I can't forget the wonderful cheese straws... Mom's favorite. I can't even begin to describe all of the wonderful goodies, but we also had key lime pie tarts. A special request since Mom was famous for her key lime pie. The tarts were pretty good, but Mom's pie is still hands down winner.

Friends and family who hadn't seen each other in so many years were able to catch up and reminisce. It was just the party Mom would have wanted. The day slowly wound down and people trickled out here and there.

Isn't is strange how a social custom like this can bring closure. As long as I live, I will have a hole in my heart that has been left by mom's absence in this world, but since the memorial I feel a joy; a peace in my soul that can't be described. Maybe I needed to celebrate her life with others who loved and appreciated her. The memory of hearing all of the stories of her will be with me always.

Turning the Page

Back now from Atlanta. Although I am completely worn out, it was a truly fantastic weekend. The memorial was everything I could have wanted and more. Mom would have absolutely loved it (I'm sure in some way she was there partying with us.) I plan to post a complete synopsis of the event as soon as I get copies of pictures and eulogies.

We arrived Thursday evening after 10+ hours on the road. It was a very nice, but long drive. Our host Pete had a scrumptious dinner on the table as we walked in the door; salmon, homemade mashed potatoes and green beans. Yummy! Deb was en route from work in Seattle. Throughout the weekend we were able to spend some quality time with our goddaughter Caroline (apparently, I read a great bedtime story.)

The next day, after wrapping up loose ends for the memorial (or as I've come to call it, "Mom's Show") I met up with Foxy (one of the Loser Diva's ~ reference posting from October 6, 2007) and Musician Extraordinaire, Don Luigi Longworth Roksov (read on; please...) to head to Bebe Barbosa's palatial estate for rehearsals. Along with the aforementioned Losers and Trouble Popinolpolous, we learned, and occasionally butchered, a piece of music for Mom's Show. Later, the rest of the entourage arrived for a sumptuous feast cooked by Bebe and her most wonderful husband. The revelry continued into the night and the Diva's elected to allow Musician Extraordinaire in to the Loser's fold as an honorary member (no voting rights mind you!)

The next day was long and exhausting for me, but completely fabulous. The 'show' was everything it needed to be and more; music, memories, laughs, tears... Perfect. I promise to post when I receive everything from people.

We arrived home last night to some very happy puppies! It is good to be home now. Time to turn the page; start a new chapter.

Every Day; A New Day

The nice thing about a routine is the further along you get into it, the less you notice it. Things are returning more to "normal," if that's what you could call my life. This week was much easier. When I first returned to work I thought it would be a month before I could work a full day. By Thursday I noticed that I wasn't as tired or shaky by the end of the work day. Deb, my friend of nearly 30 years (yikes!) has frequently reminded me throughout our friendship how resilient I am in mind, body and spirit. I suppose she may be right... I am surprising even myself at how quickly I am getting stronger. Yesterday, I even managed to take Gary and the Girls on a walk when I got home from work. :)

While I still have moments of sadness over Mom's absence, as I will for the rest of my life, I feel my grief over her loss waning. This is aided by planning her memorial. At first it was hard to imagine anything but a somber occasion. I've only been to a few in my life, but they were all quite serious and dignified. Nothing wrong with that. But Mom lived life out-loud. (For those of you who never were able to meet her, this statement is her essence.) She was loud and fun and always laughing. I would dishonor her not to have a memorial for her that didn't live up to how she lived her life. So if you are coming to the memorial, expect something a little different. Tissues and hankies are welcome, but be prepared to shed tears of joy. And lot's of laughs!

Returning to the "Routine"

Two months is an eternity when you don't have a routine. Try as I might, I just couldn't manage getting into any sort of routine while recovering from major surgery. You just never know what one day from the next is going to be like. Throw on top of that the emotional upheaval of losing a parent and the temporal distortion is really drastic. But a few weeks before returning to work, I started to realize I was really going to be in for it if I didn't start trying to get back into a routine.

Physically, I feel fine. The range of motion in my arms has returned and even though I still feel a stretch in my abdomen at times when I stand up after sitting for a while, I am able to walk upright. In anticipation of returning to work, I started scheduling my days so my re-entry into the "real world" wouldn't be as hard. Ha! You know what they say about 'good intentions.' I would wake up (after a mere 11 hours of sleep) energized and ready for my daily routine. I would actually dress in something other than pajamas (to make it more realistic!) And start to do my little list. Mostly things around the house, but I managed to get out to do a few errands too. I tried to walk to the post office every day to build up my stamina. But every afternoon, I would hit a wall and need to take a nap. "No problem," I thought. "I'm working up to it and once I get back to work, I'll be right as rain."

I started back to work on Wednesday. I developed a plan to ease myself back into work. I know I can't push too hard, so I decided to be very mindful about how I'm feeling. I woke up early to give myself plenty of time to get ready. It had been quite some time since I donned make-up and work clothes. It was like the first day of school after summer break. It was beyond wonderful to see all of my co-workers again! And although I didn't have new clothes, I did have a whole new 'look' as it were. "Did you lose weight?" "Oh, you look great." I heard over and over. "No," I replied. "No weight loss. It's just been re-arranged."

I spent the day catching up on what I'd missed, saying hello to everyone, but at 2:30 I hit the wall. All I could imaging doing from that point was crawling under my desk and taking a nap. I left early and after the hour commute home, passed out on the couch for a couple of hours. I'm pretty sure I'd pushed too hard because I had a wretched night. In fact, I slept through my alarm (that blared for an entire hour) and woke up 90 minutes late. The next day, I was determined to pay even closer attention to my energy level. But low and behold, around 2:30 I hit the wall again. The problem is that I go along just fine and then my energy is gone. The feeling doesn't creep up so it's hard for me to tell if I'm pushing too hard or not. So I talked to my boss about working shorter hours to build my stamina. I have to push a little because that's the only way I'm going to get back to normal.

What was that mantra I had a while ago? Wasn't it patience, patience? ...Patience damn it!

Just Chillin' Out at the Corn Dog Stand

I suppose y'all thought I fell into some sort of hole in the earth. Not so. Just was taking a break from it all. I've been working hard on rebuilding my stamina which seems to be the only residual from my surgery. On days when the weather isn't so depressing, I've been walking along the boardwalk. I walk down to the post office everyday to get the mail. And today I got out to do errands. Everyday I get home, I just collapse though. I'm definitely improving, but it's in very small increments. I start back to work on Wednesday, so we'll see how it goes...

I had another follow up appointment with my doctor today. We discussed the next phase of 'rebuilding' me. There are four things he's planning on doing; two of which are "clipping my dog ears and making my cats eyes smaller." And I swear to you that is exactly what he said!! But I'll break it all down in 'human' language.

• As mentioned before, he will re-do my abdominal incision to give it a nice small scar. There were areas that opened up during my infection so now my scar is rather wide in a few places.
• At either end of my abdominal incision (which ends right around the love-handle areas) the skin has formed little triangles. These are what he calls the 'dog ears.' He's going to smooth these out because dog ears coming out of your love-handles is completely unacceptable in most social scenarios.
  
• Gravity has taken its toll. (He told me this would happen, but he really didn't have to. I'm well aware of this horrifying phenomenon from past experience.) During my surgery, he had to remove a small part of the 4th rib on each side. The breast mounds have settled a bit and now I have what can only be described as an area that is concaved just over each breast. So he needs to insert a little more fat to make it look more natural and less like a breast implant.
  
• Lastly, he will insert my new nipples and decrease the size of the skin islands, which incidentally are shaped like cats eyes.

The surgery should take around 3 hours or so and I'm scheduled for March 23rd. He said I'll be out of commission for a few days, but I should be back to work by the following Monday or Tuesday.

Hope you are all having a wonderful holiday season. Things have been very low key here. Gary had to work Christmas night, so we haven't really participated much in holiday festivities. He made a really scrumptious breakfast on Christmas morning and then we took the dogs on a nice walk. It was actually very nice just to spend time together and not be so caught up in all of the gift insanity or all of the cooking craziness he is usually involved in. Seeing as he is working on New Year's Eve, I plan on doing something completely different to ring in the new year. I'm going to celebrate behind closed eyelids. Usually we are out celebrating, but I figure I'm going to welcome the new year the next morning well rested. Philosophically, I think it's a great start to 2008.

Updates from the Circus

It's been a little while since I blogged, so I wanted to let you know that I'm doing okay. My infection has cleared, but my incision looks like hell. Dr. Rodriguez says he'll be doing the revision, but I'm not sure when. Sections had opened up to drain during the infection, so they are still healing. I'm also still trying to 'stretch out.' I'm walking upright, but my range of motion isn't quite back to normal. My right arm is doing better, so I'm trying to focus on reaching for things with my left. But being a righty, this is taking considerable mental effort.

My dad came up last Monday. He's been helping me going through Mom's stuff and walking the dogs and things that I'm not up to yet. Mostly he's been here for emotional support. My grief over Mom's passing has started to subside, but I miss her terribly. Not an hour goes by that I don't think of her. Sometimes I'll hear something and think 'I can't wait to tell Mom that.'

I'm still working on the details of the memorial and am still trying to decide on an appropriate venue. Still planning for late January though. More details as they become available.

News from the Big Top

We had a few inches of snow here yesterday. It was beautiful and I was very happy to watch the weather from the comfort of my living room next to the fire. I think I am starting to feel better though. The little piles of clutter all around the house are starting to get to me. I straighten a little here and there, but like mushrooms, every time I clean up a pile three or four pop up in its place. I managed to help Aunt Nell change the sheets on my bed, then immediately took a two hour nap. I'm still trying to get my strength back.

I had a follow-up appointment to check on my infection today. It has started to clear and I have only a few more doses of the antibiotic to take. Dr. Rodriguez was encouraged and removed a few left-over sutures (likely the culprits of the infection.) I'll see him just after Christmas and we'll talk about my revision of my abdominal incision at that time. A few parts of the incision opened up and drained the infection, so he'll have to trim away that tissue and stitch it up again so I'll have an 'attractive scar' (if there is such a thing!)

Getting out this morning to head to Baltimore was another matter. It usually takes about an hour to get to the city, so we gave ourselves over 90 minutes because of slippery roads. Despite planning ahead it took over 2 hours. No worries though. My doctor was trapped in his driveway and arrived only moments before I did.

Aunt Nell will leave us tomorrow. She has been such a wonderful help, both as a caretaker and emotionally. We will miss her and have made her promise to come back when I have recovered and we can 'play.'

Do Something...

You all have been so supportive, asking what I need done. You are all giving me exactly what I need right now; prayers, love, memories of Mom. I realize that you also feel the need to 'do something' as an outlet for your own feelings and grief. Donate in memory of Carolyn C. Braden... money, time, yourself; whatever you can or want.

If you've followed the blog from the start you may remember my mentioning a website I found early on called the Circus of Cancer. If you've not gone to the site I suggest you do. This was the brainchild of Kelly Corrigan, diagnosed with Stage III breast cancer before the age of 40. The site is filled with a photographic and written account of her journey through this circus. The site also focuses on how to talk to a friend with cancer. I feel this is such an important aspect of a woman's diagnosis because so many people don't really know what to say. Or think they know what to say.

People keep telling me how strong I am, but the truth is that I have derived my strength from the support you have given. I somehow have been able to surround myself with truly remarkable people, but I don't think everyone is so lucky. This education campaign that Kelly has taken on has so much more value and importance to breast cancer survivors than any of you know. If you would like to make a donation in Mom's memory, please do so by sending it to:
Kelly Corrigan's Circus of Cancer
455 Mountain Avenue
Piedmont, CA 94611

Another organization that is close to my heart is the American Cancer Society. I worked there in a breast and cervical cancer screening program several years ago. I am absolutely committed to the ACS mission. And folks, they are one of the best when it comes to utilizing funds. They use less than 10% of their funds on administrative costs and salaries. The rest of the money goes to research, programs, advocacy, and fundraising. You can donate money or time as a volunteer. Go to the American Cancer Society donation page for more information on ways to donate in Mom's memory.

Mom hid her cancer for over a year. I'm living proof that if caught early, cancer can be cured. More needs to be done so that no other woman ever needs to go through what my mother did. There must be more research for cures and treatment, more funds so that every woman can be screened early and receive treatment, and education so that woman (like my mother) don't have to be burdened with the fear of this disease.

Are There Roller Coasters at the Circus?

My dear, dear friends and family. How could I possibly be so lucky to be surrounded by such wonderful people? Your messages of support, your tears through the ether, your phone calls have all been so appreciated. I have cried while reading your memories of Mom and your words of encouragement for me and the 'Support Team.' You are all the 'medicine' I need to cure my broken heart. I may need to take it for a while, but it will help to mend it back together in time.

I am taking care of myself. But this morning Gary and I had to drive to Baltimore to complete the arrangements for Mom's remains. Laying awake last night in the wee hours, my arm brushed my abdominal incision. It was very tender. I knew without even getting out of bed exactly what it meant. I have developed an infection along my incision. This was confirmed when I looked at it when I got up this morning. Red, swollen, tender. On the way to Baltimore I called my doctor. He was able to squeeze me in after Gary and I left the funeral home, God bless him! He gave me an antibiotic which he thinks will take care of things, but he gave me his number to call him this weekend to check in and let him know how I'm doing (he is truly wonderful!) I'm having quite a bit more pain and the infection was probably the source of the pain I've been having since Thanksgiving Day.

I should have named the blog 'Stephanie's Carnival' since there aren't any roller coasters at the circus. This has definitely been a roller coaster ride. But I plan on staying in and focusing on healing myself over the next days and weeks. My wounds; my heart.

Circus Lights are Dimmed

Shortly before noon today, my dear beautiful mother, Carolyn Clem Braden, peacefully slipped from this world. She was surrounded by her loved ones and I am so honored to have been by her side holding her hand as she left me.

The last two weeks have been the most difficult I hope to ever have in my life. That was when we started nearing the end of our medical options. But she continued to fight. We gave her every chance to rally, but when I saw the chest x-ray from 10 days ago, I knew that she would not win this war. The doctors approached me last week about discontinuing her ventilator support, as this was the only thing keeping her alive. I could not bear the idea, feeling as though I was playing God with her life; deciding whether she was to live or die. After the awful job of sorting through my own feelings and recollecting the conversations I'd had with her about this very scenario, I knew what we needed to do. I was keeping her alive for my own selfish reasons. I didn't want the pain of making the decision. I wanted her to go at a time that she determined and take that burdensome decision away from me. I also had her last response ringing in my heart: she had told me she'd wanted to fight. I was so utterly conflicted by all of these things. But I remembered a conversation we had shortly after her diagnosis. We'd discussed quality of life vs. quantity. These last two weeks she'd been minimally responsive at best and without any quality whatsoever. The vent was the only thing keeping her alive. This is no way for anyone to live.

Earlier this week Gary started to inquire (again) about bringing her home to die. He called respiratory companies, case managers, doctors, any- and everyone to see if this was feasible. But it would be more trauma for her just to get her here and she would die immediately after arriving because her oxygen needs were much greater than anyone could provide. Again, I wanted her here for selfish reasons. I wanted her to be closer to me so I could be with her more.

After much introspection and a conversation with my father, I came to the conclusion that maybe my promise to fight for mom meant more than just fighting to keep her alive. Maybe it meant fighting for her; her wishes; what she would have wanted if she'd had a voice. I know that she would have hated to be languishing away in a hospital bed. She'd fought so hard against this thing, this wretched cancer and in the end it was her lungs that just weren't strong enough. She could never fathom how strong she really was. Such strength in such a little package.

My heart is totally broken, but I'm comforted in knowing that there is no more suffering for her. Gary, Sandra, Aunt Nell and myself were there. We spent time talking to her, praying, and reading sacred words to her. We had beautiful music playing. Music was such a large part of her life. For those of you who weren't lucky enough to know her, she was a accomplished musician. She started playing piano when she was 5 years old and played everything by ear. She also had an incredible singing voice, although I never got to hear her sing in her prime. She often joked that when she had me, she screamed so loud that she could never sing soprano again. But she did still sing.

We will start working on arrangements for her. She expressed her wish to be cremated. We will likely plan some sort of memorial service after the holiday's in Atlanta, her home town. We will reflect on her life and it will have the air of how she lived her life... Easy with a smile and a laugh.

Status Quo at the Circus

Not much of anything new to report from the circus, but I know how y'all get when you don't hear anything. I would be the same way!

I called late Thanksgiving Day to check on Mom. They told me that they were moving her to the Special Care Unit. It is a unit that can care for patients on ventilators, but they don't do a lot of changes in the vent settings. Since Mom's vent is maxed out, and they are just keeping her comfortable for the most part, she is okay to be on this unit. She has a very large room and it's on a nice quiet hall.

Deb and Pete left Friday morning. It was hard to see them go, but Deb had been away from her daughter (my adorable godchild, Caroline) for 12 days!! Deb helped out so much during her week here with us. Pete had come up Tuesday which was a great distraction for Gary. Individually, they are spectacular in the kitchen. But together, they are a force to be reckoned with. They whipped up a phenomenal Thanksgiving feast. I also think it was good for Gary to have an extra male in the house. Being surrounded for so long by all these females (both human and K-9) he says that the smell of testosterone, which smells like diesel fuel, has been ever so faint.

After Pete and Deb left, Sandra and I went to visit with Mom. I told her all about Thanksgiving and how it just wasn't the same without her smiling face there at the table with us. Though she never opened her eyes, she seemed to smile and raise her eyebrows as I told her what Gary and Pete had fixed for dinner. I updated her on all of the emails and calls we'd received. She continued to react with her facial expressions. It was the most expressive I'd seen her in over a week. I told her that we'd connected with some old friends in her address book and passed on messages they wanted us to tell her. I remembered to call her childhood friend Judy who had wanted to just say a few words to her. I held the phone up to Mom's ear and when she heard Judy's voice, she was visibly startled! After the jolt, she raised her eyebrows and smiled! It was wonderful to see her reactions as Judy spoke to her. I spoke to Judy shortly before the nurse came in. They had to change Mom's ventilator out for a different model, so we moved our chairs back out of the way. We ended up staying about two and a half hours; much longer than I should have, but it was just so good to see her being responsive.

This morning I woke up exhausted. Visits with Mom just take it out of me, both emotionally and physically. I couldn't muster the energy to go for a visit today which just kills me. I called several times to check on Mom; no changes; status quo.

Aunt Nell returned today also. It is so good to have her back. I'm hoping I'll feel good enough to go tomorrow for a visit. If not, I know Aunt Nell will want to go. It is so much more comforting to have family there with her. I wish it were me.

Much to be Thankful For

Such a cliche, I know, but it's something I've been thinking a lot about lately. This season has been a difficult one with the absence of my mother's beautiful smile at the house. Nonetheless, I'm so incredibly grateful for so many things. I'm so thankful for the last 18 months that she has lived with Gary and me. Since her diagnosis, we've been able to have a lifetime of meaningful conversations. I'm so thankful we didn't put any of those conversations off for a later time. We've been able to relive a lot of great memories too; many I'd forgotten. I'm incredibly thankful for the support I've had not only during my disease and recovery process, but also the whole ordeal with my mother. Both experiences have enabled me to befriend people I would have otherwise never met. In fact, many of them I have YET to meet in person. But they have given me amazing and unending support and advice.

Today I am surrounded by loved ones, both near and far. Sandra and I went to visit Mom today. She is unchanged and didn't rouse while we were there. She is, as far as we can tell, comfortable. It's all I can ask for right now.

As you gather today with your loved ones, think about what to be thankful for. If dinner ends up being late, don't get impatient. Eat some bread and remember fun times. This may become a great memory for the future; the time the turkey didn't get finished until 9pm.

Today's News

After the marathon visit of 8 or so hours on Sunday, I was utterly drained. I mustered the strength to make it to the couch, but that was about it. I slept on and off, but seemed to feel just as tired. While I am continuing to heal and make gains in my recuperation, I just don't have the stamina yet to put in a full day.

Monday morning I had a call from Lizzy Lou (one of the Loser Diva's) of the Left Coast. As luck would have it she and her lovely daughter were heading to Buffalo within hours to spend Thanksgiving with her brother and his family, and she had a layover in Baltimore. Making an impromptu decision, she chose to miss her second flight so she could come shower Mom with love, kisses, and a serenade or two. I gave her directions to the hospital. They jumped in a rental and high-tailed it to Annapolis. They sang several songs including 'Santa Baby' and the 'Green Acres' theme song. I know Mom was loving it and laughing along inside! She and Lovely Daughter then headed to North Beach to shower us with love and kisses for the evening. It was wonderful and we had a sleep-over last night with them in the loft above our bedroom. They continued on the second leg of their journey today.

We had a short visit with Mom today. We jumped through a few hoops to get permission for Ripley to visit 'Granddogma' but it was very worth it. They had turned down Mom's morphine drip in hopes to decrease the sedation so she could enjoy the visit, but she is so sensitive to the drugs that it gave her only minimal change. She nonetheless is still comfortable. She was fully aware of her fuzzy visitor though. She smiled when we came into her room and told her that Ripley was in tow. Ripley also arched her head and stared at Granddogma when we came in also. We put her on the bed and she sniffed and sniffed. She inched forward to Mom's face and gave her sweet little kisses. Mom squeezed my hand. After a few minutes of sniffing and licking, Ripley became very upset and wanted Gary to hold her. She kept darting her eyes toward Mom and burying her head under Gary's neck. After a while, she wanted to get back on the bed and she laid by Mom's side.

Ripley was very quiet on the ride home. Normally angling for the front seat, she climbed in the back with Sandra and curled up. I know how she feels. Even though this visit was just an hour I'm beat. These visits are emotionally exhausting, but being at home just waiting isn't much better. The Support Team are just as busy as bee's around me. Sandra and Deb are Gary's right and left hand girls right now. They clean, fluff, launder, cook, and do any other necessary household or outside errands for us. It is so good to have them here now.

'Thanks' Doesn't Cut It

My dear, dear family (I say 'family' because you are all, friends and family alike, my family now.) I read every email through tears of gratitude for the support and advice you are passing along. Every single message helps me sort through all the jumble of feelings. Thank you, thank you, thank you... The words just don't seem adequate enough.

Dark Days at the Circus

Friday and Saturday mom was in and out of consciousness. She attempted to write some notes, but we had a very difficult time figuring out what she was writing. It was so frustrating for us and her. After about 30 minutes we were able to figure out what she wanted. She was having a very difficult time breathing and was anxious. They were giving her low dose morphine and ativan which made her very drowsy.

This morning sometime after 5am, mom's nurse called to say she wasn't doing well. She'd had a rough night and had asked for ativan. The nurse repositioned her and her oxygen saturation in her blood dropped to the low- to mid-eighties. (It should be mid- to high-nineties.) Nothing the nurse and doctor did would bring her numbers back up. The vent settings were set the highest they could go. The nurse called us and told us to come.

The dogs roused Deb (my best friend from Atlanta) and Sandra. I called Gary who was at work. I told him to come to the hospital after his shift ended at 7am. The girls and I were out of the house in 15 minutes.

It's pretty bad. She roused a little when we arrived, but her eye's were just so foggy. She was trying to tell us something; or maybe she was just really confused. That's possible too since her oxygen saturation was so low. She appeared to be very uncomfortable so I asked them to give morphine whenever she appeared to be struggling.

The doctor came around about noon. He said at this point they had done absolutely everything that they could for her. Gary and I had discussed her status about an hour before. We decided to make her a 'no code.' There really is no sense in keeping her a full code. They can't possibly increase the vent, she would never survive compressions, and the only thing they could do is to give her medications to keep her heart going and her blood pressure high enough. We told the doctor we wanted to keep her as comfortable as possible. We put her on a morphine drip which will keep her sedated, but she will not have any pain.

It was a rough day for us all. We stayed until around 2pm at which point I was really worried about Gary who'd had yet to sleep. I was very weary myself. We chose to go home and made the nurse promise to call us if there were any changes. We got home around 3:30. I went to bed around 4 and slept for a few hours.

I think this is the hardest thing I've ever been through. I want desperately to stay 24/7 with her; to spend every moment I can with her. But I just don't have the stamina since my surgery. I can usually get about 3 hours of activity before I need a nap, but today I went about 10 and I'm completely spent now. It's breaking my heart completely. I have so much support around me; Gary, Sandolly, Deb, all the calls and emails from you all, but my mommy is dying and I can hardly stand to take each breath without hurting more and more.

I will do my best to keep the blog updated. I know you are all wanting information as it comes and know this is as hard for many of you.

Show's on Hold at the Big Top

Sandra had just finished helping me with my shower. I was exhausted and was looking forward to settling down for a nap. I'd barely sat down on the couch when the phone rang. It was the hospital. The doctor was calling to tell me mom wasn't doing well. She was doing okay until shortly after 1 o'clock. They were planning on taking her to the OR at 1:30 to put in the Pleur-X catheter. For some reason, the oxygen levels in her blood started to drop and wouldn't rebound. They were having to use a lot of forced pressure to get the air into her lungs. They did the procedure at the bedside instead because they didn't think she was strong enough to travel to the OR. They had some difficulty getting the catheter in, but they said that the fluid 'spewed' out of her with such great force, they couldn't believe it. We arrived shortly after they finished and they were getting the chest X-ray. She looked really bad, but I'd learned from her nurse they'd given her a lot of morphine and ativan which just completely knocks her for a loop.

She opened her eyes for a quick moment and squeezed my hand before nodding off again. The doctor had stepped down to the ER before we'd arrived, but came back to her room after a while. He was very concerned about the amount of pressure needed to ventilate her lungs. It was still very high, but had come down from the high number it had been earlier. He essentially told us that this was probably it; they had done all they could to help her. He added that taking her home was not an option because home vent's can't deliver the amount of force that she needs now to get the air into her lungs. He wanted me to make a decision right then and there to put her on hospice. I asked him if he had told all of this to mom. He said she had been too sedated. I told him I wanted to talk to her before deciding anything.

I went into the room and held her hand. I asked her to open her eyes and listen. She did. I explained what had happened and what they were telling us. I told her she was very sick. And they I repeated to her what I told her weeks ago: I would do what she wanted. If she was too tired and wanted to go, I would let her go. If she wanted to fight, I would tear down the walls and defy anyone to hold me back in fighting for her. I then asked, "do you want to still fight?" With less hesitation in answering any question I've asked her in the last week, she nodded 'yes.'

I walked out of her room and found the doctor. I told him what I'd done and her answer. I explained that I've been with her throughout this and based on what I've seen, her body doesn't handle insult very well initially, but that in a day or two, she tends to bounce back. She pulls from reserves that no one had any idea that she has. She wants to fight and I must follow my gut, despite the doctor urging me to let her go. If things don't change in a day or two, we'll revisit things. But for now, fight mommy. Fight!

Unorthodox Question for Readers

I found out yesterday from Dr. Rodriguez that mine is a fairly rare surgery as there are only about 6 hospitals around the country that are doing the DIEP Flap. (I am so incredibly lucky to have been where I am!!) A recently reformed modest person, I have had no reservation about opening my shirt to show what I had done. It is all in the interest of educating people; medically speaking of course. There have been many of you how have expressed curiosity about what my new 'landscape' looks like. So I am offering so show those who are truly interested via a photograph. I am now so passionate about what I had done. The work Dr. Rodriguez did was absolutely a miracle. I have looked at so many pictures of reconstruction online and they just don't compare to my results. I've said it before, but if I can possibly help one single woman out there to get through and past this disease, I will feel as my time on earth has meant something. I understand that for many woman, feeling 'whole' again can be such a challenging part of breast cancer surgery. If in showing my results to you can either help you or someone you know (or even don't know), that will be worth any possible embarrassment I may experience. And believe me, I am not AT ALL embarrassed by the work my surgeon has done!

So if you are interested, please email me at sb.cosby@comcast.net. I realize that there are those who have no interest for many reasons. No worries. That is why I will just email those who are and refrain from putting any such photos on the blog.

More Milestones

Today was my follow-up appointment at The Breast Center. I was supposed to be meeting with the Breast Surgeon, the Medical Oncologist and the Plastic Surgeon. Since my pathology report came back with flying colors, I didn't need to meet with the Medical Oncologist. I met with Dr. Khakpour (breast surgeon) and she was very pleased with how everything went and basically said that she was signing off on my care. I won't need mammograms in the future (since I have stomach where my breasts are supposed to be.) Essentially, I will only need to do self-breast exams to check for any necrosis of the flap, which is not likely. I have offered my services to her; well, to her patients who may be considering mastectomy with the DIEP flap (what I had done.) I will be glad to talk to them about my experience and show them my "battle scars." If I can help any woman going through this, it will have been worth it.

After meeting with Dr. Khakpour, I met with Dr. Rodriquez and his nurse practitioner Nicole. Even he was impressed with how well things look. Since the plastics team still has some work to do, he will continue to follow me. I will see him again in another month for follow-up. In about 3 months, "after things settle" I will meet with him again so we can start to contour the breasts if needed and start working on reconstructing the nipples. I think things look pretty good, but he pointed out that the right breast is slightly larger. He will be able to even things out and ensure that the contours are even as well. I am very pleased with his high standards of equality, even though, as I said, I am so amazed at the work already. Gary and I were sitting at lunch and I pulled out my top and looked down it and said, "Wow!" Gary cracked up. I just can't stop looking at them!!

After talking with Dr. Rodriquez, Nicole removed ALL (four) of my remaining drains. I HATED those things and was thrilled to get rid of them. I've been told that it can hurt having them removed, but pain was not what I felt. I have absolutely no reference to describe what it felt like. My breast and parts of my abdomen are numb, but as she removed them it felt like having a string being pulled from under my skin; not quite a tickle, just very, very strange! Then she removed the stitches. As she removed each stitch, she laid them on a gauze pad sitting on my chest. They looked like recently deceased mosquitoes; 20 in all when she was done. My breasts now look like someone carved the outline of little footballs on each one. There is minor scabbing which should wash away in a few days. The incision on my lower abdomen is thin and long from back of the left hip bone to the back of my right hip bone (they gutted me like a fish!) This is a little more red and scabbed than the breast "islands" as they call them. It will take a little longer to heal. I'm still walking hunched over, but Dr. Rodriguez said that I can start to walk more up-right as I can tolerate. It still feels like I'm stretched tight like a drum. I still have lifting restrictions; no more than 8 pounds; 5 or less is preferred.

It feels so great to have this part behind me (did I mention how happy I am to have to drains out?) But a lot more than my appointment was going on today. Aunt Nell went back home today. Her son Steve and Aunt Doris (her sister) came yesterday to fetch her to take her back home. I cried like a little girl when saying good-bye. I can't ever express my appreciation for her time, her help, her compassion and caring. On the way home from my appointment, we picked up Sandra, mom's best friend. She will be here to help with the next phase of things. We ran by to see mom very quickly. She was very drowsy. I didn't know it at the time, but she'd had physical therapy earlier and was very tired from the activity. I'm so thrilled that she is finally receiving therapy to strengthen her! Tomorrow they will be placing the Pleur-X catheter into her pleural space. Her lung is still filling with fluid; not entirely a surprise. This catheter will allow Gary and I to drain this fluid at home which will keep her MUCH more comfortable. We will also start getting training on the home vent. With all of this going on, I'm hoping we can have her home before Thanksgiving! So it was a packed day. I'm totally pooped, but did I tell ya how happy I am to have the drains removed?

Newsflash at the Big Top

The big news of the day is that I have officially been designated as cancer-free! Not a huge surprise, but it feels really good. The reason I chose mastectomy was to make sure they got all the cancer. My doctor called me today to let me know that the cancer was, in fact, ductal carcinoma in situ, there was no microinvasion of cells and the sentinal node biopsy showed no involvement. Based on everything, I will not need radiation (which we suspected) AND I will not need tamoxifen, which is a surprise seeing as the majority of women with breast cancer take it for 2 to 5 years! Yippeee!!! Now I just have to focus on walking like a homo sapien again and things will be good.

Gary and I went to see mom today. She still looks great and they had just completed an evaluation of her swallowing when we had arrived. She had passed the swallow study and will start tonight on soft foods. Gary asked if she had any requests from his kitchen. Garlic mash potatoes and ground meat. I'm sure it will be fantastic when it's all said a done. We spoke to the case manager and she is working in earnest to get everything ready for mom to come home. We will need a lot of equipment to take care of her here. They will need to order a home ventilator and will need to train us on its operation (a home vent is VERY different from the ones used in the hospital.) Should be a piece of cake though. They've not been aggressively weaning mom, but once we get her home we can work on it. Since I used to work at a hospital that specialized at weaning vent patients, I'm well aware of the practices they used, so I think we can be successful. Also we'll be able to get her back on the Enercel, the homeopathic immune booster. This should really jump-start things! We are just so anxious to have her back with us... We can't wait!

As mentioned in previous blogs, I have traded in vanity for comfort. This is in regards to using the walker. I knew the chiding would come; sooner or later. Seems like it's sooner... At the hospital, we ran into one of mom's doctors. He asked how I was doing, then asked as he pointed to the walker, "where's your little basket?" Ha ha. I told him the pink one with the pink glitter tassels, the bike horn, and the antenna with the reflector flag were all on order. My darling husband added that he was going to put the tennis balls on the back legs when we got home. ...Hilarious! The good news is I am 10+ years younger than Gary, so he'll get his. I'll have my revenge... sooner... or later...

Happy Days...

I was feeling fairly energetic yesterday, so I decided I wanted to go see mom for a short visit. My walker had been delivered Friday evening and putting all vanity aside, I still didn't think it would make much of a difference in helping me to walk 'hunched over.' Vanity be damned 'cause I'm here to tell you that it gave my lower back such relief that I could have walked for miles with that thing! So in the car Aunt Nell piled me; walker in tow. It felt good to stretch my legs, back and all of the other muscles as well. When we got up to moms room I could hardly believe my eyes! The breathing tube had been removed from her mouth and she had the biggest smile I've seen on her in 10 months!! It was such a beautiful thing to see, I was beside myself with joy!! She was mouthing words a mile a minute. Aunt Nell has a deaf son and does a lot of lip reading, but mom was going so fast that even Aunt Nell couldn't keep up with her. She is definitely returning to her old self, talking a hundred miles a minute, smiling, laughing... Such a wonderful sight to see. She even demanded a nail file, her make-up bag and a mirror, and a box of Bic pens. The doctor said she is definitely on the mend because she is now more concerned with her appearance! I think we have crossed a hurtle and now can start working to get her home. Yea!!!

On the way home, Nell and I continued mom's tradition and stopped a Chik-fil-A for a bite. Every little thing like that I do just makes me feel a little more normal. By the time we got home I was definitely tuckered out. I crawled into bed and had a nice nap. Nell and I had a nice evening (Gary had to work.) But despite having a 'big' day, I didn't sleep very well. I think that while getting out felt good and I thought I was handling it well, it may have been a little too much for me. I'm going to have to learn the exact balance of knowing how much to push and knowing when to stop. I'm amazed at how much energy I'll have, but even a little activity will just kick my butt!! I was quite drowsy this morning and stayed in bed until around 10. Aunt Nell helped me with a shower and I'm going to relax the rest of the day. She has collected all of the things on mom's 'laundry list' and has left for a visit.

I have a couple of days to prepare myself for my next big outing. I have my follow-up appointments with the team on Wednesday. It is going to be a long day in Baltimore. We'll also be picking up Sandra from the airport. She will be returning to assume the role as caregiver from Aunt Nell while she goes home to take care of some business for a few weeks. I have no idea what we would have done with out Aunt Nell. She has been such wonderful support both emotionally and physically! She is such a powerhouse, I can only pray that I will have a fraction of her strength when I'm 80!

The Act Continues

Today I've been tired. Probably because I had a rough night. I won't go into the details, but I'll just chalk it up to the Dulcolax Double-whammy. Yeowza!! The experience left me a bit pooped today (pun intended...) But I was able to have a nice shower and get my hair washed today and then cuddle up in my wonderfully cozy robe that my co-workers gave to me and napped throughout the day. I'm feeling much better tonight.

Mom on the other-hand is doing wonderfully!! I had planned to go spend some time today with her, but in light of my evening, I chose to stay home and rest. She was scheduled today to get a trach and I wanted to be there for a little while to give her support. Gary went in my place and spent about 2 hours and then Aunt Nell went up this afternoon. They both said that she was just as perky as they'd seen her in weeks! Very alert and writing many notes. They did the trach at the bedside around 2 o'clock and let Aunt Nell back in around 4pm. She was still very perky and looked SO much better without the tube in her mouth. I'm hoping to see a rapid progress in the next few days. More to come.

I had a wonderful experience last night. I spoke to a woman, a complete stranger, about to undergo the same surgery as me (but she's having a single-sided mastectomy with reconstruction.) Our experiences have been very similar in many ways. She is a friend of a co-worker of mine and when they learned about our experiences they put us in touch. At my invitation she called me last night on the eve of her own surgery. I was able to fill her in on my hospitalization and answer her questions and fears.

Continuing on my own story; on Sunday night I was finally transferred to a step-down unit. The staff there was incredible. I was getting up much more, sitting in the chair. I had thought far enough ahead to bring DVDs to watch. They made the time pass much faster. At our hospital, you actually have to pay for TV access. You have to purchase a prepaid card or something to that effect to get about 20 channels. Now, usually I can take or leave most of what's on TV, but when I worked on the neuro / neuro-surgical floor, I would turn on the news for my patients. I believed it helped with their orientation to the here and now. And as much as I don't like much of what is broadcast, it does help to pass the time. Until I pulled out my DVDs, time passed excruciatingly slowly!!

It was so wonderful to have visitors too! They so helped to pass the time and it was so nice to discuss something other than pain scale or bowel movements. I received several floral arrangements, the wonderfully cushie robe I mentioned earlier, an incredible basket of goodies, and a "puppy" that stayed with me constantly. Two co-workers gave me a little stuffed puppy that was soft and looks remarkably like Ripley. Very cute and gave me comfort when I missed the 'girls' (the pups at home!) Now I'm here at home. I'm navigating the stairs very well; they are much easier than I thought they would be. My walker was delivered today and, oh, what a difference that makes. I was getting around fine without it, but I have much less lower back pain when I use the walker since I have to walk hunched over for now. I've settled into a routine. I wake up and have coffee in bed, listen to NPR and watch the Bay come alive. Then I come downstairs, have breakfast, read email, do my assigned exercises, and then maybe nap on the couch. (Now that my walker is here, I'll probably add a couple of laps on the porch...) After lunch I go back upstairs for another nap and then come back down to do more exercises and have dinner with the family. Then maybe a movie or some TV and back up to bed for the evening. If I'm able I will try to go visit mom once or twice a week. We still have no idea when she will be able to come home. Day-by-day...

Thanks to all of you for your calls and emails. I have continued to read them and enjoy every single one!! Your love and support is palpable and helps to heal me!

Circus Star Emerges Through the Ring o' Fire

I write this morning from my bed looking out over the Chesapeake. I watched the sunrise this morning and feel completely relaxed. First, I'd like to publicly thank my extraordinary husband, who has done a remarkable job of keeping all informed of the happenings. Quite frankly, I'm a little worried that he has set the bar a bit higher for my blog entries! This morning I read every single email he sent out and every single reply returned. I've experienced pride at his remarkable strength, overwhelming gratitude for the prayers and best wishes, outright belly laughter at some of the responses (Eric L, you are killin' me!), and tears of joy at the amount of love that has emanated from this little screen this morning.

Rewind 7 days... I was understandable nervous heading to the hospital Friday morning, but I had difficulty putting my finger on what exactly I was afraid of. I had every confidence in the team, I felt that they would be able to manage my pain, I was still confident in the decision I'd made for the double mastectomy... Fear of the unknown; that must have been it. After going back to change into the hospital gown, they let Gary come back. Shortly after, the anesthesia team came in. Gary, in his usual modus operandi, had everyone laughing in no time. Dr. Rodriguez then came in to draw cartoons on my torso. A big smiley face on my belly, with a circle around my belly button for the nose and two circles around my nipples for the eyes. It was pretty funny looking. Only then, were they able to give me some valium to take the edge off. Gary was still in "improv" mode and I remember laughing all the way to the OR. I don't remember what about exactly, but Glenda the OR nurse and the anesthesiologist and I cracked up all the way there. Something about I should have taken the red pill... ("Matrix" fans will get this.) I remember then looking up to see the two large OR lamps and thinking what a cliche. You see that in every movie about someone going to surgery, but that's exactly the last thing you see before you climb down into that hole of dreamless sleep. I think that they may have been the thing I was most afraid of. There is something very unnerving about having your brain on hibernate for 14 hours. There is no sense of time passage, no memory of anything.

The worst part of coming out up out of the hole was the nausea from the morphine (I'd rather have been in pain.) Oh, and the sore throat from the breathing tube. My night nurse Jane was a total angel. I've not had to be bathed by anyone since I was a baby, but she gave me the most gentle, soothing bed-bath... Nurses, I know that we think that baths may be the least important things we can do, but from the patient perspective; not so. It is such a tender, caring and necessary act. It was incredibly relaxing and is one of the greatest acts of kindness you can do for the infirm. All I could do was to keep thanking her over and over again.

There wasn't much sleep that night as they had to check the pulses on my breasts every hour to make sure everything continued to work. Much napping in between... I started eating the next day and also began getting pain medicine orally. I have to say, that the pain was not what I expected. What I mean was that it wasn't as bad as I thought it would be. After being able to assess the landscape a little better, I realized that the insertion sights for the drainage tubes (all SIX of them) were (are) what was most uncomfortable. I was still pretty numb across my torso from my breasts down to my bikini line. I likely won't regain any fine sensation since nerves were cut. I felt like some pre-pubescent boy not able to take my eyes off the work they'd done. The breast mounds they created are amazing. It really doesn't look like they removed anything. I keep thinking 'I got got a new rack; same year and miles as the last pair, but slightly improved model.' It is incredible. In my mind, Dr. Rodriguez walks on water!!!

The only other PACU experience was my emotional meltdown. It was Saturday night around shift change. My back was sore and I wanted to bring the head of the bed up a little. My arms were up on pillows and the controls for the bed were on the railings. I couldn't reach them because of the pillows and my limited ability to move. I tried and tried, but no luck. I called to my nurse, but she didn't hear. I called again. After 5 minutes I started calling for anyone. My back was in full spasm at this point; I was in pain, no one was coming. I basically came unglued. All the stress of the last few weeks just came in a huge tsunami of emotions. Finally an nurse came up and and helped me raise the bed. My nurse and the new nurse coming on duty came to help. It was so overwhelming not having any control over the simplest of things like shifting to get comfortable. I let it all out and unloaded the whole saga of my life in recent weeks onto my night nurse Rokia. She too was an angel sent to me for that evening. Her compassion knows no bounds and she was exactly what I needed. So Mr. Rivest if you are listening, you need to outfit EVERY bed in the hospital with hand-held call bells with bed controls! (FYI: Rivest is the big cheese at the hospital.) There are many more people with procedures much worse than mine that need to have some semblance of control during their hospital experience.

Nearly 45 hours after my surgery was completed I finally was transfered to a bed. It was so good to be in a room with a clock and a window. You have no idea how quickly you can lose all sense of time without one of those two things. More later on that experience. As Gary would say, 'film at 11.'

Counting Down to Fire the Human Cannonball

We continue the dance with mom. She still continues to wean; very slowly. But other problems are arising. She has what's called anasarca (she's retaining A LOT of fluid.) They've started giving her some albumin which will hopefully help. The second issue is a potential infection. She's not having any fever and her white blood cell count is well within an acceptable level, but one indicator in her blood work was quite elevated (for you medical types: she had 34 bands...) They've taken samples of her blood, urine, and sputum and will check them for any 'bugs.' And they've started her on antibiotics just to be sure. She still remains in good spirits and donned her witches hat (complete with long stringy hair) as her Halloween costume today.

Her thoracic surgeon spoke to us today about her right lung. He said that he would like to try the talc procedure again. It would be not quite as big a deal, since she already has the chest tube he can just squirt the talc in through the tube. He thinks that since the lung has re-expanded that we may be able to take advantage of the improvement and that it may "take" this time. Mom's attitude is 'why not.' The tube is already there, so it's no big deal.

The count-down for my surgery is well underway. I've been working to get things done before I have to go in: paying bills, collecting all that I think I may need (knitting, reading, loading my iPod...), laundry, etc... It occurred to me that I absolutely had to make time to trim my toe nails! Sounds mundane enough, but if I don't get to it now it could be WEEKS before I can reach them! Little things like that just keep flooding my mind. I mean, I don't want to let it go or else I'd be able to climb trees with the things in a few weeks!

Tomorrow I go for a nuclear injection. Rose, Breast Cancer Coordinator extraordinaire, told me Monday that this won't be a normal injection into the vein. They will need to inject it directly into my breast so they can do a sentinel node biopsy. This checks to see if the cancer has spread to the lymph nodes. If it turns up positive, they will be able to see it during surgery and they will remove the nodes. Rose tells me that this burns when they inject it. I report for surgery at 6am on Friday. The surgery will start at 7:15 and will go for about 12 hours. After surgery, I will stay in the recovery room 24 to 48 hours. The nurses there are trained to spot early signs of clotting (which is a major risk of this surgery.) After that time, I'll be out of the woods and will be transferred to a regular hospital bed. I will have about 6 drains. I will also be "hunched" over for a while. It won't be pretty. It will be a little while until I can get my hands over my head so I won't even be able to wear the t-shirt my friend Lizzy Lou got me that reads "Keeping Them Real!"

More News from the Center Ring

So much to tell... Mom's condition remains, for the most part, the same. They continued weaning yesterday (she was on CPAP most of the day- a lower level of support than she'd needed earlier in the week.) The plan today was to wean her off completely and, if she did well, remove the tube. They turned off the vent. Her respiration rate and oxygen saturation in her blood both stayed in a very acceptable range, but she indicated she felt like she was working very hard to breath. I think that since they had turned the vent down the day before, she had been working on deep breathing and she had just tuckered herself out. I may also just be wishful thinking... The doctor decided that it probably would not be best to remove the tube or take her off the vent. I stepped outside the room after he had examined her and asked about her lungs. The right side, the side they did the talc pleurodesis, is remaining free of fluid. But the only reason why it is clear of fluid is because she has a chest tube in. It is still putting out a lot of fluid and will likely continue to do so. The bad news is that the procedure to make the lung stick to the pleural space and hold it open didn't work. It is not something they can repeat, so we may need to go to Plan B. The option is to put in a small tunneled catheter into her pleural space. We can drain the fluid every few days which will give her relief and keep the fluid from building up.

The left side is another issue. They drained it late last week to give her more reserve. But despite them removing the fluid, the lung did not re-expand... at all. I looked at the chest X-ray from this morning and the lung is clearly "shriveled" up. Also the space is starting to refill with fluid. There isn't much they can do for this lung. But many people are able to function very well on just one lung.

They will continue to try to wean her, but if she is not able to do so by next Monday, mom may need to consider a tracheostomy. She has written notes to us that she still wants to fight. Her spirits are very good and she jokes and writes hilarious notes from time to time and has asked me to bring in Halloween candy for the staff. Now that she is getting the proper oxygen and nutrition, her humor has returned. She has said (written) that she wants to try the trach if need be. I am so glad she still wants to fight, but I wish I could be there over the next week because so many decisions (big ones) are going to be made. I have every confidence in Aunt Nell to help mom through this. The family has written and emailed and let me know how wonderful Nell is at caregiving (I was pretty aware already.)

So despite that I watch 'Dancing with the Stars' and still can't tell one dance from another, I'm getting pretty used to the dance we are doing here... Two steps forward; one step back... Two steps forward; one step back...

Planning for the Next Act

Mom was a little uncomfortable today, despite the nurse giving her shots for the pain. The chest tube is very tender, plus the muscles in her ribs are sore from doing all the deep breathing. So first, the bad news. Her lungs are not responding exactly as they had hoped. Despite them draining off over a liter of fluid from her left side yesterday, her lung is not reinflating as they wanted to see. Also, there is air in the pleural space. On the right side the air in the pleural space has diminished, but she is still having a large amount of fluid draining out of the chest tube. The fluid has been blood-tinged fluid up until today; it started to run clear (that's good!) The good news, they feel as though she may successfully wean off the vent, so tomorrow they will turn off the vent through the day. If she does well, they will remove the tube late in the day.

The doctor said she would probably still be in the hospital Friday. This has caused us both considerable distress. We both want her home when I have my surgery, for many reasons that I won't bore you with. But I told her today, we are probably both going to have to let it go. It will be hard for me to relinquish control (ie. be put under during surgery) when I know that she is so dependent right now. And she hates to still be in the hospital having to focus on her own care while I'm having my surgery. It will seriously limit our communication. And the worst part is that we won't be able to see each other for a week. That will be the most excruciating part. The anticipation is exhausting.

Today at the Circus

I know I should have posted an entry yesterday, but I was so tired when I got home last night. Mom was more awake yesterday which was encouraging. The doctor on the floor yesterday did a ventilator weaning trial in the morning. Mom lasted a little less than an hour, but then she became anxious and her respiration rate went up. They chose not to do anymore weaning yesterday. The doctor was pretty negative and told me that she would probably not wean off the vent. This kinda ticked me off, because he'd never seen mom prior to this hospitalization. The other doctors, the ones who have seen her before, all say that they believe she will come off the vent.

Her cousin Anne sent a care package with a Honey-Baked Ham, some pecan tarts, tea biscuits, pear preserves she'd made and cheese straws. Gary had called to let us know the package had arrived yesterday afternoon. I told mom what was in the package. She was pretty hungry at this point. But boy, when I mentioned cheese straws, she picked up her pad and pen and wrote, "I WANT CHEESE STRAWS!" I told her she needed to get the tube out so she could eat. She then wrote. "CHEEEEEESE STRAAAAAWWWWS!" This went on for about 15 minutes. (The only person who likes cheese straws more than me is my mother!) Needless-to-say, she is very motivated to get the tube out so she can have cheese straws.

Today Aunt Nell and I went to the hospital. Mom looked great. She's rehydrated and very alert; writing notes and joking. At 8am they turned down the rate on her vent to 8 (that means 8 breaths per minute.) She is consistently breathing over the vent, but they are concerned that she isn't taking in enough volume in air. See, her lungs have been compressed so long by the fluid that she's had very little volume, so she compensated by breathing faster. Now that they have drained some of the fluid, she can take in more air, but she has to retrain herself to do it. This morning they drained more fluid out of the left lung. They did this to give her a little extra reserve to help her wean. She did very well. After a few hours, she started to breathe much faster. I held her hand and told her to 'breathe in and out, nice and slow, nice deep breaths.' After about a minute, she was able to slow down her breathing on her own. This happened a second time and we were able to talk her down from a panic that time as well. Every hour or so, we worked on taking nice deep breaths to get those muscles around her ribs used to working again. By the end of the day, they lowered the rate on the ventilator down to 4. She continued to breath on her own over the vent very well. She just did so fabulously today! It will probably take a few days to wean her and get the tube out, mostly because she needs to work on taking a bigger volume of air, but she is very determined to get that tube out and get home.

Her nurse today was Bob. He was just fantastic! He knew just how to 'handle' her. Her cousin had included a pink cowgirl hat in the goodies she sent. Mom insisted on wearing it all day. Bob called it her 'party hat' and said she could wear it only if he was invited to the party. She teased him, but wrote a note to me that said "great nurse!" I agree.

She got a call from Sandra today (see earlier blog entry's.) She had called my cell phone to see how mom was doing and I called and gave her the number of the phone in the room. Mom had been asking about her the previous day, so I thought it would be good for mom to hear her voice. I held the phone to mom's ear while Sandra spoke. Mom was able to mouth or write words for me to say back to Sandra.

We are back again tomorrow. When we left tonight, I gave mom homework. I told her that while she's awake I wanted her to do breathing exercises for at least 5 minutes every hour... Nice deep breaths to work those muscles. You know she will. She's pretty feisty!

A New Day

First, thanks to all for your calls and emails in response to mom's set-back. I can't thank you enough for all of your care and concern. Aunt Nell and I spent the day in the ICU with mom. When I arrived, she was very anxious, but alert. I explained what had happened and held her hand a while. She seemed to calm down. She dozed on and off today. The good news is that they were able to turn off the IV medicine that they had to give her to keep her blood pressure high enough. They also were able to turn off the sedation medicine as well. Mom was very alert this afternoon. She was able to jot down some notes to answer and ask questions. She wanted to know about all the tubes, what they were for, why she had them, how long they would stay. I spent quite a bit of time explaining everything to her and the plan for her care. It was a real moment for me. I've taken care of so many patients in the past and have explained what I was doing to them and gave a brief overview of what was going on. But I really saw a change in mom after I explained what had happened, what all the equipment was for, what to expect with buzzes, beeps and bleeps. Her humor is still intact, even in the midst of this. Her chest x-ray today looked much better than yesterday's. Her right lung is reinflating which is very good. The thoracic surgeon feels very encouraged by her progress.

They tried to wean her off the ventilator today. This morning she tolerated a little less than an hour before she became very tired and she began breathing very fast. The thoracic surgeon and mom's nurse thought this was good. The doctor in the ICU and the respiratory therapist were not as encouraged. They feel she should have lasted longer. My personal opinion: the surgeon knew mom's condition prior to her hospitalization. She was/is so debilitated, he sees this as a great improvement. I feel the same way. I think that even though it was only an hour, she seems so much clearer than she's been in a long time because she is receiving all the oxygen she needs. It may take a little while longer for her to wean, but I think she'll do it!

Rough Days

The last two days have definitely been a mixed bag. First, the good news. I received a call yesterday from the genetics counselor who told me that I tested negative for the the BRCA1 and BRCA2 genes. Great news! This doesn't mean that my cancer doesn't have a genetic link, it just means that if it genetic, they have yet to discover the gene that is responsible for the breast cancer in my family. This in no way changes my treatment decision of a double mastectomy. I am forging ahead with that. It does mean that I won't need to have my ovaries removed.

This past weekend several of mom's cousins rented a few houses in town and had a get together here in North Beach so they could see and spend some time with her. My mom's Aunt Nell and Aunt Doris also came. It was so good to see family and although it really took it out of mom, she loved catching up with everyone. Aunt Nell is a retired nurse and worked her entire career as a nurse. As she told us early on, she doesn't have much, but she has wheels and time so we had arranged for her to come take care of mom while I was in the hospital recovering. On Sunday before the group left, Aunt Nell pulled me aside and told me that since she was returning in 10 days to help care from mom, she was offering to stay and help us out. I felt as though the clouds had parted, the sun shone through, and she (the angel) emerged. Mom, Gary and I whole-heartedly welcomed her help, even early!!

So I had my pre-op appointment yesterday morning. All systems go and countdown has begun. Towards the end of my appointment, I received a call from Gary. He and Aunt Nell had taken my mom to have a CT and bone scan. I was concerned that she would have a lot of difficulty getting the contrast down, but she actually did better than any of us expected. They had to lay mom flat to do the CT and because her lungs were pretty full, she had quite a bit of difficulty breathing. Gary was by her side the entire time and helped her work through it (that and bumping her oxygen to 8 liters!) He called me to let me know and we decided that she needed to go the ER.

It ended up being a wise choice. Her right lung was nearly completely full and the lower 2 of her 3 lobes were completely deflated. The pulmonologist who saw her in the ER felt that even though she was scheduled the next day to have the fluid drained, it was such a dire situation that he recommended to drain at least some of the fluid off. So he drained about 3/4 of a liter of fluid off. She was much more comfortable, but was still dehydrated. By this time is was 8pm and we'd been in the ER since about 11:30. We had been told they were going to admit mom to the hospital, but the ER doctor came in to tell us that the oncologist covering for mom's doctor was NOT going to admit her. Never-mind she was incredibly weak, hadn't had anything to eat all day, and had not gotten any IV fluids either. So here is was 8pm, by the time they get us discharged it will be 9pm (if we're lucky) and by the time we get home it would be close to 10pm. AND mom's not supposed to have anything to eat after midnight and we have to be up at 4am to get her back in time for the procedure. I explained all this ad nauseum to the ER doctor who was NOT happy the doctor wasn't going to admit her. So we got her home around 10. She was so pooped that we set her up to sleep on the couch; she just couldn't tolerate going up the stairs. We paged the surgeon who was going to drain her lung and do the procedure to keep her lung from filling again. The last information he had was that she was being admitted, so we wanted to let him know that the plan had reverted back to her coming in as an outpatient. We didn't request a call back, but he called us back almost immediately. Needless to say, he was pretty ticked off they hadn't admitted her. He told us that we wouldn't need to have her there at 6am, but to come around 7:30.

She slept very well (we have a comfy couch.) We arrived with plenty of time to spare and they let us wait with her before they took her back. The plan was to draw any remaining fluid off the right lung and insert the talc to help hold the lung to the pleural lining.They were able to finish in about an hour, but when they finished, her lung did not re-expand the way they expected. The drew off an additional liter from the right lung. After the procedure, her oxygen levels in her blood dropped very low and very rapidly. They put an oxygen mask on her. When that didn't work, they put in what can best be described in layman's terms is a breathing tube "lite" (or a LMA tube for you medical types.) They planned to let her lung reinflate and removed the tube. Again, things didn't workout as planned. She had some more distress and they had to intubate her and put her on a ventilator. Her blood pressure dropped very low also. All of this was in the recovery room. They asked Gary and I to come back and then they put us in a little room for the doctor to come talk to us. At this point I got a little nervous. When he came in, he explained what was going on and asked what her wishes were in regards to life support. Wait. WHAT??? Talk about a direct hit at the water line. We totally weren't expecting that. We had to give him an answer right then and there. Mom and I have talked about it, but she just had the procedure done and I felt we needed to give her body a chance to heal itself. Because of her debilitated state, it is going to take more time to heal. We were able to spend a little time with mom, but they were putting in a central line (a "major" IV) pretty quickly, so we couldn't visit very long. She did squeeze my hand and responded to my questions so that was a little encouraging. One of the doctors showed us her chest x-ray. You didn't have to have medical training to truly recognize the extent of her pnuemothorax.

After we left the recovery area, it really started to hit me. Gary and I were able to further discuss her wishes for her code status. We decided to ask the doctor to make her a "chemical code." This means that if her heart beats erratically they can use drugs to try to correct it, but we don't want them to do compressions if her heart stops. She is so frail and weak that it would do much more harm than good.

It was a rough afternoon, but they got her into the ICU around 2:30. They had been able to stabilize her blood pressure and her blood oxygenation was doing well also. We were allowed to see her around 3pm. She was still responding to me; squeezing my hand. She snoozed for a time while we gave the nurse information. One of the chaplains came by and we spoke for a while. She is also a music therapist. She had her harp in tow and came into mom's room and played a while. It was really nice! After she left, mom woke up. I asked her if her backside hurt and she indicated yes. They were able to turn her and gave her some pain medication. She was much more comfortable. I explained what had happened to her and what the plan was. She was very lucid and was able to nod responses to 'yes' and 'no' questions.

She will stay in the ICU for a few days. The hope is that her lung will slowly re-inflate and she'll be able to ween off the ventilator. Time will tell.

I'm certain I've rambled away with this entry. I'm pretty exhausted and it has taken me two hours to get this done. Pardon any grammatical, spelling, or math errors... I'll try to keep the blog up-to-date so you can all be kept appraised of changes or improvements.

Follow-up and Answers to Other Questions

I have several questions about previous postings, so I figured I'd respond because you may all be asking the same thing.

First, a report on the pup that wandered up last month. After two near-successful attempts, we've not been able to adopt out Lola, the rottie that "found" us. We keep saying there is no way we can have 3 dogs, but after a month with us, she has inched her way into our household and our hearts. She has graduated from a rope as a leash to a full blown collar and leash of her own. She has her own bandana now (like the other girls), and she even has moved from a stainless steel mixing bowl to her very own dish. She's getting along just fine with the other dogs and Hudson, who usually wants nothing to do with strange dogs, is tolerating her very well, thank you. She has the sweetest disposition and we have just fallen in love with her. So Lola is officially off the market.

Mom has had a bit of difficulty lately. Mostly because her lungs have filled back up with fluid. We are looking forward to having the procedure done this week that should help things. Despite her fatigue, she is making wonderful progress. I've been taking photos of her wound. I've cropped these to show just under her arm where she had many small tumors. As you can see the second picture (taken today) the tumors are gone! This has happened in just under 4 weeks!! She still has a very long way to go, but progress is progress.

Life these days is all about improvising and adapting. When we ordered the Enercel (the homeopathic) we knew it would be given IV, but the thought never occurred to me how we were going to hang the stuff until the day it arrived. So this is what we came up with. Yes. That is a whisk! And no, we've not had scrambled eggs since mom started the Enercel. Hey, whatever works, ya know?

We've been told by so many that they are praying for us. Mom has a hard time keeping it straight because there are just so many. So, someone suggested we get a map. It took me forever to find just the right kind. A regular road map was too big for the wall, so I looked for a children's map. I looked everywhere, but no luck. Finally, I went into a local toy store. They said they didn't have any maps, but as I was walking out, the clerk said, "We have a placemat with all the states." It was perfect. You can see here what I've done so mom can see it from across the room. She loves it and it is SO impressive.

Many of you have been asking for our address. Here is the information:

PO Box 824
North Beach, MD 20714

Keep your emails and calls coming. We look forward to every single one!

Ch-ch-changes...

Yet more changes.

I got another call from the breast cancer coordinator today. They have moved my surgery back to the original date of November 2nd. It's good that the surgery will be sooner, but I'm becoming aware that maybe I'm not as adept to change as I thought. When she told me, I felt like I'd had the rug pulled out from under me, again. I'd called everyone who was coming to help out and reschedule them, plus I'd mentally and emotionally reset myself for the new date. You'd think it would be easy to have the date pushed up to the original, but it really took me aback.

So things will work out. I'll be happier to get this done and over with. But I'm a bit emotionally exhausted from all of this.

Patience, patience, patience.

Falling Off the Wire Without a Net

I get a call first thing this morning scheduling my pre-op appointment to go have all of the preliminary blood work and other tests for the surgery. It was the last thing that needed to be scheduled, so once I received the call I felt things were all in place. I had set all the arrangements for friends and family to come take care of mom while I was in the hospital, and both of us once I was at home. Shortly after getting the appointment details, I received a call from the Breast Cancer Coordinator needing to reschedule my surgery. As she spoke the words, I knew what was about to follow. I'll interject to say that even though I knew what was coming (my surgery was being pushed back) I was thinking mere nanoseconds before she uttered the news, 'maybe she's calling me to push the date up.' Hope is such a strange, confused thing sometimes...

So I felt like someone had grabbed my ankles and up-ended me over the side of a ship and now I'm bobbing in the ocean, flummoxed as to why it happened as the ship sails away. Okay, a little over-dramatic, I grant you, but here's the upshot. My surgery is pushed back a full 3 weeks; that's not the worst of it. It is scheduled a day before Thanksgiving. This involves so many more people than just me. I've coordinated 5 individuals to come and Gary has worked diligently to coordinate his schedule. We're now going to have to start from scratch.

'So why?' you ask. Well, I was told there is a woman who was diagnosed about the same time as I was, but she has invasive cancer. Due to reasons they didn't go into, she was not able to get her surgery earlier. Because she has invasive surgery, her case is much more urgent than mine. Dr. Rodriguez, the plastic surgeon, is in very high demand... he is after all, the best! So they need to do it sooner. Sadly, I got bumped. It sounds harsh, but I'm completely empathetic for this woman. I know if I were in her position, everyday I waited would be a shear eternity of agony. Just knowing that the cancer could be breaking free and circulating in my body would be a little more than I could bare. My cancer is non-invasive and is still confined to the duct. While I want it out as soon as possible, I'm not in her position.

Patience, damn it. Patience!!

The Signs say "YES"

Isn't it strange that when you open yourself up to it, the Universe seems to send messages loud and clear to help you along your path? For me lately, it has been more about affirmation. I'm aware that some of my friends think my decision to have a double mastectomy is an overreaction on my part. I don't feel the need to defend my decision because I know what I've put into making it and the treatment is something that works for me. I've been told time and time again that this is a very individual choice. I'm certain that 10 women would come to differing decisions based on completely different motives. But I have tried to put myself in my friend's shoes to see it from their perspectives and I suppose I can see how people could think that I'm overreacting. But they've not walked any distance in my shoes.

I've just finished a great little book that The Martini Princesses in Charleston sent to me. It's called "The Victoria's Secret Catalog Never Stops Coming and Other Lesson's I Learned from Breast Cancer" by Jennie Nash. It is a very quick read and I highly recommend it to anyone. As I was reading I felt as though I could have written much of it. Her story completely affirmed the decision I've made to have a mastectomy.

Last week, my "old" friend Fish emailed me an article in Time about breast cancer. Of course, you know it (breast cancer) is all over the news right now since it is Breast Cancer Awareness Month. I read through the article which was very well written. A researcher at University of Michigan stated that women with early stage breast cancer go from diagnosis to surgery in about 2 weeks. Most choose less invasive lumpectomy but at least one-third of them are eventually unhappy with the decision. At least 50% of women didn't feel fully involved in the decision making process about their treatment. The kicker is that the more involved a women is in the decision of her treatment, the more likely she will choose mastectomy! By the time I have the mastectomy, it will have been two and a half months. I'm not sure what the average time to treatment is at University of Maryland, (where I'm being treated) but I think that having the time to fully consider ALL of my options, research information online, talk to other women and families who've dealt with breast cancer, and get a second opinion has been beyond helpful. I'm not sure if what Fish intended when he sent me the article, but it was certainly an affirmation for me.

Now I'm not going to sit hear and type that I'm not scared. My entire life (besides when I was a newborn) I've only been in the hospital overnight once, and that's when I was 5 and somehow got dehydrated. So being put under for 12 hours gives me the willies, not to mention spending 5 to 7 days in the hospital! Nevertheless, I am not deterred. All the signs the Universe is sending are saying ' Go for it!'

Hero of the Bigtop

Not enough has been said or written about the biggest hero of this entire ordeal... my husband Gary. This is a man who spends his nights in the ER saving lives; or as he jokingly says when he heads off to work, "I'm going to stamp out lives and save disease." Otherwise he'd put himself out of a job. There isn't much rest for the weary these days as he comes home to take care of my mom and me. This man has tirelessly cooked, cleaned, and run errands well above the call of duty. And all without a single complaint. He also has provided compassionate and loving care to his mother-in-law. He fixes her whatever meal she requests, empties her bedside commode, and patiently helps her up and down the stairs.

He has been dealt a seriously crappy hand. A wife about to undergo major surgery and a nearly bedridden mother-in-law. I try to tell him thank you regularly, but it just doesn't seem enough. My gratitude goes so deeply, words are just a bit lame. How in the world did I get so lucky?

More of the Dog and Pony Show

When I think back about all that has happened over the last week, my head begins to spin. We've had a lot going on. On Tuesday, we received the Enercel, the homeopathic that will supercharge mom's immune system. We gave her the first dose Tuesday evening. At lunch Wednesday, mom called out to me. I was working on a very important report for work and was "in the zone." You know, one of those rare times where you find your groove and the juices are really flowing. I hated to set down my computer because I was worried that once the spell was broken I wouldn't be able to get back into it. But I raced upstairs because she rarely calls out. "What?" I asked with more than a little concern. "I'm famished!" I've not heard her utter these words in years! I took her lunch order and prepared it as quickly as I could. She decimated everything that was on her plate. Through the week, the appetite has remained quite good. This being one of the "side effects" of the Enercel. She also says she is starting to feel a little better; stronger. But we haven't yet seen any boost in energy, but she just looks better.

On Wednesday, Sandra (her best friend for over 50 years) arrived from Texas to help take care of her (and me and Gary, too.) I was a little worried at first because any time that Sandra has come in the past, all they do is lay around, tell old stories and howl and cackle with laughter. I knew that with mom's diminished lung capacity, any lengthy conversation or laughter would completely exhaust her. But Sandra is a wise, caring soul. She has know exactly when to curtail any activity to give mom her rest. I think the visit is doing mom a world of good. And never mind all that she has done for Gary and me. She got to cleaning on Friday; something that we've just not had time for. The house is now sparkling clean. I've promised everyone that if I need help in anyway, I'll ask. But asking anyone to clean my house is just something I'm not capable of. I can never express the depths of my gratitude to her for doing this!

Thursday morning I was doing the daily dressing change for mom. When I removed the old dressing, I could barely believe my eyes. Mom's wound seemed to make a drastic improvement over night. The wound didn't look as "angry" as it had before. It seemed as though the tumors had slightly shrunk (one at her armpit was nearly completely gone!) The skin looked as though it was healing. The Femera is supposed to shrink the tumors, but we'd seen no improvement whatsoever until we started the Enercel. The thing that struck me the most was that her skin around her torso, once very rough and hard, was soft, supple and not discolored anymore. I am completely amazed!

I took Friday off from work. Three girlfriends from across the country came to North Beach to "love and support me." Our little group is called the "Loser's." We've come to know each other over the last 15 years through singing and touring. Diva's everyone, the name is derived from the fact that everyone is an amazingly talented singer, yet not one has a recording contract. So when we get together we have every bit the diva attitude with names to match. Several years ago, on one of our yearly gatherings, we came up with pseudonyms. We are: Bebe Barbosa, Foxy McMahon, Trouble Papanopolis, and me, KiKi del Fuego. Believe me, the names fit!!

Last night, we had a birthday party for mom. Her birthday is Tuesday. Gary made a wonderful Caribbean feast, we had presents, cake and ice cream. She loved it! She was beaming as we all sang 'Happy Birthday.' We blew out her candles for her as a group. Thank God someone had the foresight to not let her do it. Oxygen and fire don't make the best combination...

Another Outing...

Another appointment day for mom. She had to get an infusion to help correct her calcium. Since she has some possible cancer spots on her bones, the calcium is shifting from her bone into her blood so her blood levels of calcium are higher. Her doctor ordered once a month injections that will help the calcium move back into the bone. Getting comfortable has been a frequent problem for her; she's just got no meat on her bones! But we had some bright spots today. She said the infusion chair was very comfortable. (Bonus! Can we get one at home?) And when I told her that her Medicare kicked in today, she squealed with glee. It was very cute. She said she was feeling stronger than she'd felt in a while. It was, of course, Chik-fil-A day. On the way home I asked if she was up to stopping by a pumpkin patch to get pumpkins and mums. She loves the white Cinderella Pumpkins. Although she stayed in the car, it was a beautiful afternoon and she enjoyed watching me walk around picking just the right one. I found one that looked just like Cinderella's carriage (after midnight, of course!)

She was fatigued when we got home, but insisted that she get up the stairs on her own volition. She said that she is angry and frustrated today at her infirmity. She wants to have more energy. I think this expression is a good one. It illustrates that she wants to fight! I like that!! After resting a while, she stood up and with Gary's help walked to the stairs. I tended her "leash" as we call it (her oxygen tubing.) I'm usually helping her so I was struck by all of the activity in the rear. The three dogs were following her up the stairs matching her slow pace, not falling one step behind. There was barely enough room for me! Gary called them the pace team. They were all so concerned and looked like they would catch her if she missed just one step. Good helper dogs!

***Newsflash***

Hot off the presses!!! I just received a call from Rose, the Breast Center Coordinator extraordinaire. (Working on a Saturday no less!) She informs me that my surgery is scheduled for November 2nd. "B Day" (as is "Boob Day.") Now I feel like things are moving and we are working towards something solid!

A Busy Week at the Circus

We had a lot going on this week. On Sunday, my father and his wife (David and Michele) came for the week to help out. I had a busy week at work and really appreciated not having to worry while I was gone during the day. They were very helpful with the mom's basic care needs, plus pitched in with household stuff as well. Needless to say, my diligent attention to housekeeping has gone by the wayside lately. They were wonderful in helping with dishes, dog walking, and even the dreaded "poop patrol" in the yard. (Thanks Dad!!!) They also did some relaxation techniques with mom. Dad, a former massage therapist, was able to really help mom with sore muscles. Michele, who has advanced knowledge in Reiki (an energy technique used in alternative medicine,) worked on her for quite some time. Mom said she felt very relaxed and energized after they finished.

That wasn't the only goings on. Mom had several visitors as well. On Monday, her cousin Regina and her husband Bill drove all the way from Front Royal, VA for a short visit. Despite her lack of stamina for such visits, mom was so happy to see them and they had a wonderful visit. Later in the week Regina's brother Robert and his lady friend Cindy stopped by for a visit. Mom looks forward to these visits so much even though they usually have to be cut short because she becomes quite fatigued. But the lift they give to her spirits is good medicine.

I had a few lifts myself this week. I received several "care packages" from Charleston. My friend Amy sent some "relaxing" lotion and one of the best cards I've seen in a while (hilarious!) And Amie, Ashley and Jennifer, ("The Martini Princesses") sent a box of Charleston love. (Thanks for the Benne wafers guys!!) For those of you wondering, Benne wafers are a Charleston favorite and you can't get them anywhere BUT Charleston. If you have the means to get them, I highly suggest you do! They are heaven!!

As far as "health" news, there isn't much to report. Mom is still doing the same; some days are good, others not so good. I'm still waiting for a surgery date... nothing to be alarmed at. The breast surgeon has to coordinate a date with the plastic surgeon who has been out of town. I should know something soon. I met with the genetics counselor last Wednesday. She affirmed most of what I'd already knew or had read. I plan to have the blood test done next week. More waiting, but we'll have plenty to keep us occupied. Mom has an appointment to get a calcium infusion Monday. Her best friend is coming mid-week to help. And three of my girlfriends are coming next weekend to "surround me with love and healing."

And Now, More Juggling!

And so it goes... The day started out early. We had to have mom up, ready and out by the crack of 10, which is no small feat. She was scheduled for a thorocentesis of her left lung; the one yet to be drained. Ironic that last week we were basically a "walk in", and were able to get in and out in record time. Today she had an appointment and we were there for six and a half hours. But in all fairness, we did have to stay about 2 hours longer this time because they needed extra time to observe mom. The puncture they made didn't close up as quickly as they expected so we had to hang out to let it heal, then get another chest x-ray to make sure everything was right. Exhausted as she is by all outings, she nevertheless insisted on walking up the stairs this time (Gary and I usually have to carry her.) She is pooped, but all in all, doing very well. And outing days are Chik-fil-A days! She loves Chik-fil-A and always requests that we stop by on the way home no matter how tired she is. Hey, if she'll eat it, I'm buyin' it!!

Not much to report with me. I spoke with my surgeon yesterday and she is in the process of finding a date that she and the plastic surgeon are available together. I've chosen to be tested for the BRCA gene (the breast cancer gene.) I'm meeting tomorrow with the genetic counselor. My understanding is that they draw a blood sample and then, yup, you guessed it... more waiting!! My surgeon told me it takes 3 to 4 weeks for the results to come back, but I've heard that it can take up to 6 weeks in some places. In any event, it won't change my decision about the mastectomy. However, if I test positive (about 1 to 2% of women are positive) I'm at a much higher risk for ovarian cancer. I will need to decide whether to have my ovaries removed because the survivability for ovarian cancer is not good. Since my mother and her grandmother both had breast cancer, I think it is a prudent move to have this test. Knowledge is power...

Sideshow Dog

Okay, this is my lame attempt at a sideways homage to "The Simpson's." In every circus there is a sideshow. Although, the Center Ring has been all consuming in our lives, the insanity of life still marches on.

Roundabout Wednesday, this lovely pup comes wandering up to our door. Skinny, scared and cowering, she was immediately appreciative of any and all attention Gary and I gave to her. In fact, she was completely starved for affection. Suckers as we are for the four-legged types, we brought her on the porch, gave her water and food and cleaned up her face. We called the pound, the SPCA and the 2 local vets in town, but no one had reported a missing pup fitting her description. We thought about taking her to the pound, but if they get full they start to euthanize. Just the thought of any animal being in a cage just makes our skin crawl, so we decided to "foster" her for the time being. There was an old dog house left under our porch, so Gary fished it out, cleaned it off and before we could even get the top on she jumped in! So now we have a house guest we are sheltering and feeding until someone adopts her (you know who you are!)

Star of the Big Top Shines Brightly

Just a quick note about mom... I took her to have a chest x-ray today. Her pleural effusion had returned. They were able to squeeze us in to outpatient surgery to have it drained. Although she woke up much more energetic today, it tuckered her out to be up and about so long. But the procedure provided a lot of relief in her breathing. Her appetite was quite good today. And I completely forgot in the blog yesterday, but Gary weighed her and SHE HAS GAINED 2 POUNDS!! This is absolutely fantastic as now she is tipping the scales in the triple digits again! This has been no small effort on her part. She always tries to eat even just a few bites even when she can hardly stand to look at food. She is definitely the star of the big top today!

"...And Now In The Center Ring..."

I found out that there was a great article yesterday in the Sunday NY Times regarding a 33 year old woman who'd tested positive for BRCA1 (the breast cancer gene) but who has not been diagnosed with breast cancer. She had to make an agonizing choice whether to have a preventative double mastectomy. It is an amazing article and I encourage you to read it. There are some really good links as well. Follow the link...
http://www.nytimes.com/2007/09/16/health/16gene.html?hp

Today was the day mom finally had her oncology appointment. She was VERY weak today and it took incredible effort on her part just to get to the car. She'd had such a good weekend. Friday she had a great appetite and looked better. Saturday, her cousin Robert dropped in for a visit. She was so excited when he called Friday to set it up. They had such a lovely visit and were able to catch up on the years since they'd last seen each other. I saw a spark in her eyes that I hadn't seen in quite some time.

The oncologist said that at this point she is too weak for chemo. I completely agree; she just has no reserve. He discussed the results of her tests. The cancer cells in the fluid pulled off from her lung tested estrogen receptor positive and progesterone receptor positive. He recommended an aromatase inhibitor called Femara. This helps to block any estrogen and progesterone that her body is producing which is "feeding" the tumor. Once those hormones are blocked it will help to shrink the tumors. It is basically a good start. The oncologist wants to see how she does on the Femara for a few weeks before considering chemo. He also feels that the pleural effusion has returned. So tomorrow morning we are off to get another x-ray. If our suspicions are confirmed, she will have her lung drained again. This should provide some more relief for her.

We are investigating a homeopathic that can be used in conjunction with the "traditional" therapies. It is called Enercel and it is very promising to improve both quality and quantity of life. Check out their website at http://www.enercel.org. There have been several studies done and it is even listed as a treatment on the American Cancer Society website at http://www.cancer.org/docroot/ETO/content/ETO_5_3x_Enercel.asp?sitearea=ETO.

Despite her utter exhaustion she still maintains her sense of humor. When I asked her what she wanted to do when we got home, she said without dropping a beat, "I wanna dust." I nearly drove off the road I was laughing so hard. I guess I'm just going to have to break out the Pledge and the dust rag this weekend...

The Dog & Pony Show Continues

It's been crunch time this week. I learned the results of my MRI. It showed no other areas of cancer; however, there are several areas that are "probably benign." This means I would need to be followed very closely over the next several years to see if they progress to cancer. I also met with the plastic surgeon; the last team member I needed to meet with before "having all of the information to make my decision." He explained the options if I were to choose mastectomy. First, they could place an implant. This is a shorter surgery (about 6 hours,) but it is done in stages. They put something called an expander in and over time they slowly increase the size. Once the skin is stretched to the final size they place the permanent implant. This could be either saline (not as natural feeling) or silicone (more natural feeling, but saddled with a bad reputation for causing auto-immune problems. Studies have yet to prove the link.) I'll just go on record here by saying I'm not keen on the idea of having a foreign body in my body if I can help it.

We also discussed another option called a DIEP Flap for Deep Inferior Epigastric Perforator Flap. They take the "belly fat"-- I just hate that term. I've lived in blissful denial for YEARS that I possess any "belly fat!" Anyway, they surgically remove the belly fat and skin carefully severing the arteries and veins. The remaining skin is stretched down and reattached (basically a tummy tuck.) The fat is shaped and inserted into the cavity where the breast tissue has been removed. They carefully reattach the veins and arteries. This is a very delicate, very time consuming surgery because they are using microscopes to reattach all of the vessels. This surgery can take up to 12 hours. I may be a candidate for what they call "skin sparing" where they cut out a small keyhole of skin around the breast and remove the tissue from that small hole. There is also a procedure that is "nipple sparing" but they are not yet sure if I am a candidate for that. The benefits of skin- and nipple-sparing are obvious. I get to keep as much of the external tissue as possible. While the belly skin and fat is most like breast skin and fat, there can be pigment differences. And no, I asked if they could take it from my butt and the tissue just isn't right... Bummer!

Every physician and healthcare worker I've talked to has said that this is a very individual choice. And there is no wrong decision. So over the last few days, I've been weighing all of the pro's and con's for me, my family, my lifestyle. Every single woman that goes through this likely goes through the same process, but with a million different reasons for the outcome. I've considered my future risks and my situation with my mom right now. I've chosen to have a double mastectomy with DIEP Flap reconstruction. My heart and mind are one on this decision and I'm at peace with it.

I know I don't need to justify my decision because I'm the one that ultimately needs to live with it, but I will share my thought process if for no other reason than to provide insight to other women that may go through this. First, I am a woman which is the biggest risk factor I have. I'm white (yes, a surprise to many I'm sure...) White women are more likely to get the disease while black women are more likely to die from the disease. I have been diagnosed with breast cancer. My chances of recurrence are higher now that a woman who's never been diagnosed. I have a family history of breast cancer which raises my risk as well. I have several other areas of concern (the "probably benign" areas.) I've been diagnosed at a much younger than the average woman so I have at least half of my life expectancy to live. My chances of recurrence go up 1% of every year after my diagnosis. If I live to be 80 I'll have a 40% chance that breast cancer may return. Also, I'm young, in relatively good shape and can physically handle a lengthy surgery better now than later in life. If I ended up having a recurrence at age 65 and need a mastectomy it will most likely take me much longer to recover. In all honesty, I just want it out! I want to live with as much peace of mind as possible. A double mastectomy gives me the greatest decrease in risk and that's what I want.

One in eight women will be diagnosed with breast cancer. That means several of you reading this WILL be diagnosed. Please, please get screened! Do self breast exams! Get mammograms starting at age 40! Encourage your mothers, sisters, wives, and friends to do so! There is NO excuse not to. Insurances cover it and if they don't there are resources (I'll provide that information in a future blog.) Since I've been diagnosed I've been able to convince 6 women to get their mammograms. If every person reading this convinces just 5 women to get screened and they convince 5 women I feel like I will have made an impact. This is a curable disease if caught early and a very treatable disease if not caught early.

The Simplicity of the Circus

When you go to the circus, a lot of the experience is about simple things. Popcorn, hotdogs, bleachers, greasepaint, animals, double-jointed people. Not a whole lot of special effects. Now, I admit, it has been years (actually decades) since I've been to the circus, so much may have changed. When you are dealing with illness, sometimes the simplest things take on new significance. I can hear you saying now, 'Why on earth is there a picture of pillow's posted?' I know I would be. After a full week of trial and error with pillow placement for my mom, we finally hit the jackpot yesterday! The perfect configuration. So I didn't want a little thing like changing the sheets to mess it up. In this day and age of technology, I decided to grab my phone and snap a picture of it so my sieve-like mind wouldn't have to work double-time to remember the arrangement. Ah, technology...

Mom and I are learning patience together. She remains weak and has been frustrated by her body's inability to maintain any level of strength. I remind her that this did not happen overnight and her strength will not return overnight. She's not even receiving treatment yet. I hug her and kiss her and tell her we will walk this path together. It is bizarre because despite having the same disease, I am full of energy and strength and feel healthier than I've felt in years. Anxious as I am to start my treatment, I'm even more so about her starting something, anything now! We have another week until her appointment with the oncologist and it is hard to see her in this state. Everyday I look at her, my patience is tested.

The other day I had just washed mom's hair and I was thinking as I dried it that every job I've ever had has prepared me for caring for her. Now, I've had a LOT of jobs. I worked in a hair salon, worked as a 'duster' and gift wrapper, was a make-up artist, a temp, worked in the movie industry, was a barista, worked in sales, marketing, and many aspects of nursing. In the last week, I've used skills I learned from every single one of these jobs. I mentioned this to my moms best friend who asked how dusting expensive 'chachkies' at Fast Buck Freddies (yes, that was the name of the store!) helped prepare me for this. I told her, that arranging medical equipment, 'Get Well' cards and the like in an aesthetically pleasing albeit functional way is of the utmost importance to a healing environment! But I think that hours upon hours of dusting incredibly expensive and fragile 'chachkies' put me off dusting for life. Mom calls my refusal to dust my one fatal flaw. Sorry mom, gotta focus on the simple things. Like pillows.

Climbing the Ladder up to the Highwire

I feel like I'm ascending up that tiny ladder they have going up to the highwire. You know the one that is nearly invisible to all in the audience; the one that doesn't look like it could even support a small bird let alone a human.

First, let me, from the deepest part of my heart, thank every single one of you who have sent emails, left messages, called, prayed, sent out positive vibes and the like. Know that mom and I feel every single good vibe coming this way and it sustains us and gives us the strength to put one foot in front of the other. The days are running together but I will tell you what we've learned at this point.

We received the results of my mothers tests. Her chest, abdomen, and pelvic CT showed all clear: no vital organ involvement was visible. Her bone scan showed a few spots on her thoracic spine. The fluid they drew off her lung showed some malignant cells. We saw the breast surgeon yesterday and she was scheduled for a breast biopsy, but one look and the surgeon said there was no need. She said it is clearly breast cancer and said she didn't think she should put mom through a procedure that was not warranted. She did say that the malignant cells in the fluid tested as estrogen receptors which means the breast cancer is the primary cancer. This also indicated to her that putting mom on tamoxifen (an estrogen inhibitor) would help decrease the size of the tumors and perhaps slow or stop the pleural effusions. We see the oncologist in a week and will see what he recommends. As for now, she is comfortable much of the time. Still she has no pain, but does experience some discomfort in breathing from time to time. We're learning to anticipate those episodes and adjust her oxygen level accordingly. It helps from time to time.

As for me, I am still waiting for the MRI results. It hasn't been bothersome to me because I've been so preoccupied; as long as I get them before my appointment with the plastic surgeon which is Thursday. I am interested in what they have to say now though. I've gone from being just another woman with breast cancer, to one with a strong family history. I learned only this week from my mother that her paternal grandmother had breast cancer also. I need to heavily weigh this information before deciding what course of treatment to take.

So on we go. Climbing that tiny ladder, stepping out onto the platform that a large basket of fruit would have a hard time balancing on, looking down and seeing no net.

The Pendulum Swings

So I've been pretty upbeat. But yesterday and today, the flood gates have opened. But not for what you'd think.

My mother, who lives with us, has been losing her energy and appetite for the last few months. It has become very bad over the last few weeks; ironically REALLY bad since my diagnosis. It reached the tipping point on Labor Day. She wasn't able to climb the stairs and was eating less than 800 calories a day. We insisted that she let us take her to the ER. It was an absolute battle to convince her to let us take her, but we left her no choice. See, she does not have insurance and is just 3 weeks shy of her 65th birthday at which time she will get Medicare. I didn't think it was wise to wait. I was right.

Two weeks and one day after my diagnosis with breast cancer, my mother was diagnosed with metastatic breast cancer. This is no joke. But I'm convinced it is some sort of surrealistic nightmare. I never hated being a nurse until last night in the ER when she showed me the gaping wound on her chest and under her armpit. I knew what it meant before she ever opened her mouth to tell me. She was admitted to the hospital for tests. Today she had a CT scan of her torso, a bone scan, and they drained nearly a liter of fluid off of her right lung. She had what we call in the medical universe "bilateral pleural effusions." They didn't even touch her left lung because her skin is so swollen and tight, they felt it best not to puncture it.

The good news; she is home in her bed which is what she wanted most. She has her two "grand-dogs" as she calls them. Her bed has an amazing view of the Chesapeake and she watches the sun rise every morning. She now has oxygen 24/7. I thank God, but she has not and still does not have any pain. And she is resting comfortably. I, on the other hand, am wondering if I'll ever sleep again.

My head aches and my eyes are still burning from all the tears shed over the last day. I was ready to face this disease head on; no problemo! But damn it, I feel like I've now been punched in the gut. It wasn't supposed to get her too! I find myself wondering how I'm going to take care of both of us. One decision I have made today; I will be withdrawing from school this semester. There just too many other things that are higher priorities. I can re-enroll next term, but I just have to do this right now. I need to be with her as much as I'm able. Although I'm in agony over this, my mom and I had a discussion. Seeing her decline was a nightmare and knowing what she has now is not much better. But I find that it is easier to deal with the devil you know more so than the devil you don't!

More Fun in the Center Ring

So my 30 minute MRI turned in to 2 1/2 hour affair. No issues, just mostly waiting. I had to be injected with gadalidium so they could see the cancer better. When they injected it, I felt a little warm and tingly, however the thing I noticed most was the distinctive taste of burning dog hair in the back of my throat. Of course, how I would know exactly what burning dog hair tastes like is beyond me. A very strange experience indeed. I won't know results until next week sometime...

I've been blessed during my life not to have had any major health issues. So I'm marveling at all of the new considerations that have to be made daily. And even about the simplest of things. For instance, having been married nearly 10 years I've not had to pay a whole lot of attention to daily underwear selection. I became blatantly aware today that is something that needs careful consideration before showing up to any medical appointment. Hospital gowns are not known for their, well, coverage. So wearing the big ol' granny undies might be a bit embarrassing. But waltzing in with skimpy Vickie's Secrets could also be a faux pas. And you really have to scrutinize those comfy cotton ones for any blow outs too. This really does take critical planning! My husband said that the undies with the days of the week would probably be safe. But again, you can't just reach in the drawer and grab whatever. Say it's Thursday, but you put on Monday. This could spell disaster as the MRI tech's might assume that you are confused and try to do an MRI of your head instead! So I'm learning that it takes a lot of planning and coordination to be sick.

The Circus goes Mardi Gras

So it occurred to me that I've been showing by boobs to a lot of strangers lately. I mean A LOT! I was telling my friend Deb of the parade of physicians and residents and many others that have been examining (read: KNEADING) my breasts. Her response was, "Too bad it's not Mardi Gras. You'd have a great collection of beads." What a great way to poke fun at a clinical, albeit sometimes slightly humiliating experience. So here I am, diving in to my mothers coveted collection of beads (although she swears she didn't come by them the "traditional" way - Lord I hope not!!) Each one of these strands represents just the last 2 weeks of exposure. I'm going to continue my collection throughout this experience. I hope my neck is strong enough! Think the doctors will think me crazy if I start wearing them to my appointments?

I've had many comments lately about my positive 'attitude.' I've also been asked repeatedly, 'how are you really doing?' I keep telling people that I am REALLY doing very well. I can't explain it why I feel this happy and hopeful. Certainly most women diagnosed with breast cancer can't possibly feel this way. But since my diagnosis I feel like I've been awakened. Not really like getting a wake-up call, but I feel like I've been sleepwalking and now I'm very alert. I haven't felt any fear or trepidation, but I know that these feelings may come. I feel like I am so lucky to have found this early. Plus there are so many other horrible things going on in the world, and despite this little mole hill to get over, I am so fortunate. I think too that the support and love that I've received from everyone has just filled me with such joy. It is truly beyond any words that I have. Everyone should receive this love and support from everyone, everyday. I can't possibly imagine the kind of world it would be if everyone were filled to the brim of what I've felt everyday since my diagnosis.

My mother and I got into the "mortality" conversation today. She feels it's not fair to talk with me about it, but I completely disagree. It's something that I should talk about, you should talk about, we ALL should talk about. I firmly believe that this is not going to kill me. The statistics would back that assessment up. However, I could step off a curb tomorrow and be creamed by a Mac Truck. So we talked. I told her I intend to live well into my 90's (or longer) as both my grandmothers did. But I think that this, my first 'health crisis', has made me realize that I don't want to live for tomorrow. Looking back, I have no regrets and I think I've had a remarkable life. I was raised on an island in an amazing lifestyle, I've been exposed to many cultures, I've traveled extensively, I've sailed the oceans, I've sung and recorded CD's in Russia and Carnegie Hall, I've helped make movies, I've eaten some of the most amazing (and exotic) foods, I've drunk some incredible wine, I've taught young minds, I've saved a life or two, I've loved deeply, laughed loudly, cried unabashedly, and surrounded myself with truly amazing people. How could I possibly have regrets?! One of my most favorite movie lines keeps echoing in my mind during the last 10 days: "Get busy livin' or get busy dyin'." Wise words for all...

...Still Waiting

Well, I had a 3 hour appointment today, but I'm still not any closer to knowing what is going to happen. I met most the "Breast Cancer Team" today. This consists of the surgeon, the radiation oncologists, the program coordinator, and a volunteer. This is a teaching institution so I didn't even list the residents and fellows. AND I didn't get to meet the medical oncologists or the plastic surgeon (vacation time ya know.) Essentially this was just a 'meet n' greet.' They discussed ALL of the options with me, however the upshot is they just can't make any concrete determinations of what I need until I have an MRI, which is scheduled for Friday. They would then like me to meet with the oncologist and the plastic surgeon, just so I can make a completely informed decision. I have an appointment with the plastic surgeon on 9/13, so I'm certain that NOTHING is going to happen prior to then.

So in a nutshell, my options are as follows:

• Lumpectomy and radiation - They remove the "offensive" tissue and conserve as much of my breast as possible. Then I would have radiation. This can either be external (they would light me up once a day for 6 weeks) or there is a study that they could put a balloon of sorts into the area that they took out and inject that balloon with liquid radiation (radiator fluid?) for twice a day for 5 days.
• Mastectomy with reconstructive surgery: They lop that sucker off and stick on a new one. No, really... They would remove the "offensive" tissue along with everything else and then, during the same surgery, they reconstruct a new one. This can be done in a few ways: first is the usual method that is favored by SO many in Hollywood (can you say implant), or they can take "belly fat" (their words, not mine) and make a more natural breast out of... ME. During this explanation all I could think of was, "Can they take it from my ass? I've got plenty there to spare!" I'll save that question for the plastics guy.

Either one of these options are still on the table. Usually they would suggest the first option, but because I'm so "young" my chances of recurrence are higher. Again, they urged me to wait to make any sort of decision until the MRI results are back. It may give us reason to lean in one direction more than the other.

So again, we wait. I have to say I am still upbeat, but a little disappointed we aren't closer to resolving this. Again with the patience stuff. Hurrumph!!!

Welcome to the Bigtop

I stumbled across a great website this morning. "The Circus of Cancer." Kinda gives me an idea of what I'm in for... I never did like the circus. Well, Cirque de Soliel was cool. But Barnum and Bailey freaked me out a little. I think it was the clowns.

I'm inserting a link about how to talk to a friend with cancer. I feel like much of it is very good information. I can't begin to say how much everyone's support strengthens me. If I'm feeling low, I can just replay the voicemail or read the email sending encouragement and I feel better. But surprisingly, I find it a little overwhelming at times. So please don't be offended if I don't immediately return phone calls or e-mails. After reciting the story of my diagnosis for the 15th or 20th time, I become a little exhausted. And I'm sure the repeated conversations are weighing on my family also. Everyone has their own way of dealing with this, even in my household of 3 there are drastically differing attitudes, emotions, and questions among us. Something I've gleaned from many websites is that a lot of patience is required to get through. Patience was never my strongest virtue, but I guess God is really gonna teach me that lesson this time!

http://www.circusofcancer.org/HTH-4.html

Day 4: Post-diagnosis

Well, it's the end of the first week and I don't feel any differently than I did a week ago. I had the breast biopsy on 8/16. The news came Monday afternoon. Ductal Carcinoma In Situ. As far as cancer goes, I drew a pretty good card. It is one of the most treatable forms. That doesn't mean treatment is going to be easy. The next couple of months are going to suck! I see the surgeon on Tuesday. Surgery is definitely in my future; the question is how extensive... I guess my dreams of becoming a topless dancer are out. Oh well. Guess I'll have to save the world instead.