Melon Wars

I'm Gonna Love You Through It

2011-08-25T12:53:00.001-05:00

Not a huge country music fan but I think this video is touching. A lot of people loved me through it and I am very grateful.

Counting

2010-03-02T15:24:00.003-06:00

March 3rd is my two-year Cancerversary! Two years ago I got the diagnosis that has been over-shadowing my life!

The type of cancer I had - triple negative - has a higher rate of recurrence than most other types of breast cancer. However, it has a distinct recurrence pattern. It is mostly likely to recurr in the first three years after diagnosis. After three years, the recurrence rate drops dramatically. I will feel much better once I am past that three year mark! Of course there's no guarantee that it won't come back after three years, but the chances are greatly diminished.

So.... two down and one to go! Let's keep counting.

Sailing Along

2010-01-08T23:42:00.000-06:00

It's been 7 weeks since my ovaries were removed and I have recovered well. At my post surgery visit, I told the doctor that I wasn't having the hot flashes or night sweats yet. She said if it hasn't happened yet - it isn't going to! For once - I'm getting a break!!!

So 2009 marks the end of all my cancer treatments. No drugs, no more surgeries. When I left the Women's Surgical Oncology Clinic after my oopherectomy follow up appointment, I realized I will never have a reason to go there again - hopefully. It was weird to leave. I have been going to that clinic annually for the last 20 years! I found a dimple in one of my breasts when I was 27 years old (a sign of breast cancer) and have had annual mammograms and exams ever since. Because my sister had already had breast cancer, I was considered high risk and monitored closely. Twenty years is a long time. Leaving the clinic felt like such a momentous occasion. I will still have follow up appointments with the medical oncologist (the chemo doc) for a couple more years, but other than that, I am done with treatments.

I AM DONE! Did you get that??

It has been a long 22 months. Two biopses, four surgeries, six rounds of chemo, six nights in the hospital, a positive gene mutation test, and lord knows how many hours sitting in the waiting room. (If there is truly a place called Hell - I'm certain it looks like a UAMS waiting room!)

You try to move on and put it all behind you, but I have to admit it's hard sometimes. I still feel anxious and worried about a recurrence. I'm still adjusting to the permanent changes in my body. I'm still depressed about the state of my hair. I still mourn the loss of my real breasts.

They say your emotional recovery takes as long as your period of treatment. Heavens! I hope it doesn't take that long! Well, no matter how long it takes, at least I know I'm on the road to recovery.

Let the journey begin.

Waiting for the Other Shoe...

2009-12-11T14:14:00.001-06:00

Well, the ovary removal was pretty smooth. I have to tell you, laproscopic surgery is WAY easier than having your abdomen cut open. I hardly had any pain from the incisions. There were four tiny cuts on my stomach - one inside my belly button, two on either side of the belly button, and one along my previous c-section scar. Not a problem at all.

As always, I had great difficulty waking up from the surgey. I was really cranky this time and the recovery nurse was really irritating me. Apparently my pulse-ox was low so they insisted I wear an oxygen mask - which was making my nose itch like crazy! There was a pulse-ox monitor on my right pointer finger and every time I tried to scratch my nose I knocked it off. Apparently I was falling back asleep with my finger still ON my nose which also meant I was knocking off the oxygen mask. All of these actions really upset the nurse. After fighting with me for awhile, she finally put the pulse-ox monitor on my toe and replaced the mask with a nasal tube. I was finally free to scratch my nose at will! Why didn't we do that sooner?

There was also a blood pressure cuff on my right arm, an IV in my hand, and those blow-up leg cuffs on my calves that are supposed to prevent blood clots.   I felt tied down and annoyed by all of the equipment and yet they were trying to wake me up to go home. In my mind, I'm thinking, "If I still need oxygen and need to be monitored, why are you trying to wake me up and get me out of bed?"

Also, every time I sat up I got dizzy and then nauseous. I wound up having the dry heaves which is a horrible and strange feeling. I was puking - but nothing was coming out!  (Ugh. Shuddering just to think about it.) I finally cleared my head barely enough to put on some clothes and go home. I had expected to spend the night in the hospital, so even though I felt rushed it was nice to go home. When you can't remember the car ride home, do you think it means you should have slept a little longer?

As I said before, I had no pain from the incisions, but right before we left, I told the doctor I was having some pain in my shoulder. It felt like I had a big air bubble in my chest. He said not to worry that it was probably just a sore shoulder from lying on the operating table in one position for such a long time. I knew that wasn't right but I was too doped up to pursue it further. In the following days, the pain spread to both shoulders and became pretty intense - it was a stabbing pain. I was afraid I was having a heart attack or something!

I vaguely remembered something about shoulder pain and laproscopic surgery so I Googled it in the middle of the night. Sure enough, it is a prevelant side effect that no one bothered to mention to me. You see, they pump up your abdomen with gas in order to create a better visual field for the cameras. Turns out, the gas is cold and dry and irritates your diaphragm. And there are nerves that run from your diaphragm into your shoulder - so it is a referential pain. For some people, the shoulder pain is worse than the incisions and that was certainly true for me! I couldn't take a deep breath because the pain was too intense. It left me feeling short of breath and a little scared.  I wish someone had warned me. Fortunately it only lasted 2 days

Everything else has healed just fine. And here is the strangest part of all - NO HOT FLASHES! It has been three weeks since the surgery and I'm not having any hot flashes! How is this possible? I experienced extreme hot flashes and night sweats during chemo, but a few months after the chemo stopped, they went away. I assumed my ovaries had started back up and everything was functioning normally again.  I couldn't tell for sure since I don't have a utereus and therefore no periods. But maybe I was wrong - maybe the ovaries were dead and I just had an easy run of the menopausal symptoms????

I was in such dread of those night sweats again. Is it possible that I'm going to escape that torture? I definitely felt weepy a few days, my sleep has been disturbed, and I know I am a irritable. If I can escape the hot flashes and night sweats, I will be forever grateful.

The surgery was easy, and I feel mostly recovered. But I'm sitting here anxiously - waiting for the other shoe to drop.

Hot Flash On The Horizon

2009-11-19T21:53:00.001-06:00

Tomorrow morning I part with my ovaries. I really don't want to do this, but I sure as hell don't want ovarian cancer either.

I like my hormones. I got a small taste of life without them during "chemopause" and I didn't like it. It's true that the hormones would be leaving me in the next couple of years anyway, but I would have preferred a gentle slide into menopause versus a hard smack in the face. I'm one of those people that likes to slowly work my way into a cold swimming pool instead of diving in head first. Tomorrow's surgery will be a big dive.

I'm not worried about the actual surgery. In fact, it's kind of funny how non-chalant I feel about the procedure. This is surgery number 4 in the period of 18 months; I'm an old hand at this now. I've had a c-section and my uterus removed years ago so I know what to exect as far as pain goes. This surgery is laproscopic so it shouldn't be nearly as bad. But life without estrogen.... that's another thing all together.

I suppose I shall survive this too.

I was visiting Atlanta a few weeks back and a group of friends and I were walking in the downtown area afer dinner one night. There were many homeless people in the streets and there were people sleeping on the sidewalk. Little Rock has its share of homeless people but we have enough "green space" around that they seem to stay more hidden. I don't have a great deal of exposure to the homeless. Seeing a grown man sleeping on the sidewalk broke my heart. So really - what do I have to complain about? Losing my ovaries won't be all fun but at least I have a home, a job, plenty to eat, and friends and family that love me.

Well, let the hot flashes begin.

Milestone

2009-09-04T23:17:00.002-05:00

Wow - I just realized that I have passed the one year mark of chemotherapy. My last chemo was September 2, 2008. Can it really be a whole year?

Can it really be a whole year?

It doesn't feel as if it was that long ago. The feeling is still fresh in my mind and I'm still struggling to grow hair! I guess it has taken me awhile to truly recover. Plus - I've had two surgeries during the last year. One more surgery to go.... but I just wanted to acknowledge how far I've come.

Whew. I'm glad the chemo part is all behind me. What a drag. Remember my chemo mantra borrowed from Muhamed Ali?

"Suffer now and live the rest of your life like a champion."

Well, I'm feeling like a champion tonight!

No News Is Good News!

2009-08-26T12:45:00.010-05:00

Well, I haven't posted here in awhile because.... there isn't much to report! Also, I am busier than a one-legged man at an ass kicking!

I am adjusting to the foobs and the way they feel. I have some minor tenderness still, but nothing to limit my activities. I am even sleeping on my stomach - something I thought I would never do again! The foobs feel very strange when I'm floating in water and sometimes the muscles contract weirdly when I am using my arms. I don't really know how to explain what I mean - mostly it's that I can feel the wave of the contraction move up and over the mound of my breast. Freaky! I am very pleased with the final outcome and am beginning to believe that one day they will actually feel normal to me. Each day I notice them less. I have one last follow-up appointment with the plastic surgeon and then I will be released from his care.

Since the exchange surgery, I have been having some memory issues. I'm having trouble recalling words sometimes and one day I couldn't remember the name of my favorite restaurant. I have trouble recalling recent activities and do that thing where I walk into a room and can't remember what I came to do. I miss a lot of turns while driving. I know all of you will say you do the same things, but this isn't your everyday forgetfulness... it's different. It is a deeper blankness than I've ever felt before. I simply can not remember. I'm not sure if it's due to all the anesthesia or a delayed chemo side effect. Lots of people talk about "chemo brain" and say that it can develop well after the treatments are done. There is even research now that validates the phenomena. I wouldn't say I am impaired - but I definitely feel the difference.

The oophorectomy (ovary removal) is still hanging over my head. I am dragging my feet and dreading the menopausal symptoms that will accompany it. I experienced "chemopause" during the chemo treatments and had severe hot flashes. I felt out of control and claustrophobic in my own body. It's those drenching sweats in the middle of the night that are most disturbing. I don't get it - why does my body overheat more so when I'm lying down than when I'm up and moving around? Sigh. I need to schedule an appointment and get it done.

The rest of life is busy. We went on a trip to Destin, Florida this summer and had a nice time. I got sun burnt trying to make up for the loss of all sun last summer! But in truth, it felt good. It made me feel alive and healthy and the opposite of a cancer patient.

Eli is back in school and we are reluctantly letting go of our summer hours and embracing the school schedule. And I am taking a class at UALR! It is fun and strange, all at the same time, to be back on a college campus. I am also chairing an event to celebrate the 50th anniversary of our sailing club which is consuming a great deal of my time at the moment. It feels good to be doing more things.

In light of all the health care debate, I am once again reminded of how lucky I am to have such good medical care available to me. Not only am I alive and healthy, but I was able to receive some damn good plastic surgery that makes me look and feel normal. What a gift for me!

Now that the majority of my "crisis" is over, I feel less compelled to post here. So if you don't see anything for awhile rest assured - no news is goods news!

Second Chances

2009-07-05T13:43:00.003-05:00

If you get a second chance, grab it with both hands. If it changes your life, let it.
-Unknown

Softer Foobs!

2009-06-30T11:47:00.005-05:00

The exchange is done and I have softer foobs! I didn’t feel immediate relief from those rock-hard expanders, but now that the swelling and tenderness is down, I can really feel a difference. Ahhhhh…. It feels so nice. It’s like taking off a pair of tight shoes at the end of a long day. Relief.

The hours leading up to my surgery were a little hectic. We left Eli at my mom’s house Sunday night as we had to be at the hospital at 5:45 a.m. Monday morning. Around midnight Eli called home crying in pain. He had a terrible ear ache - the result of swimming in lake water for a whole week at camp. Ben got dressed and took the poor boy some medicine and a pain killer to help him sleep. No sooner than Ben got home, his beeper started going off. Turns out he was on call that night. Two more pages came through meaning there was very little sleep between the hours of midnight and 5:00 a.m. Lucky for me (I guess you call it lucky), I got to be sedated and take a looong nap. Poor Ben had to struggle through the next 10 hours or so with heavy eyes.

The surgery was smooth with no problems. I had a little nausea when I woke up, but not too bad. For whatever reason, I had a harder time waking up from the anesthesia. I kept asking the same questions over and over again. As soon as I would ask the question, I knew I was repeating myself. None the less - I could not remember any of the answers! It was an odd feeling. (I wonder if that’s what it’s like to have Alzheimer’s disease??) Anyway, Ben and the nurse were trying to get me to sit up and put on my clothes yet I could barely open my eyes. I really felt like they were rushing me, but they both felt it was time for me to go! At one point, they pulled the pretty blue curtains all the way around my bed so I could get dressed in privacy. I got wildly dizzy and felt like I was swimming in a sea of blue! There was nothing specific for me to focus on and I really couldn’t tell which way was up! My whole upper body swirled around in circles searching for the center of my gravity. They had to open the curtains and let me sit for a few more minutes in order to get my bearings.

They wheeled me to the car with one eye open and gently shoved me in. I’m sure my head bopped all over the place during the car ride home because I couldn’t stay awake more than 2 minutes at a time! I slept comfortably on the couch the rest of the day and even slept there through the night. I was comfortable, so why move?

I can’t really remember the beginning of Tuesday morning, but as the day wore on, I became very aware of my fever - 101.5 to be exact. The pain in my breasts was mild, but the fever made me feel awful. It was reminiscent of chemo days - blah! My discharge instructions said to call if I had fever over 101, but I was reluctant. I had the same fever after my mastectomy and it left after 24 hours. I was pretty sure this fever was my body’s reaction to the trauma of surgery and not a sign of infection. I was afraid if I called the doctor, he would needlessly admit me to the hospital for iv antibiotics – and I certainly didn’t want to go there! Sure enough, around 5:00 a.m. Wednesday morning, the fever broke. It was a miserable 24 hours but I’m glad I waited it out.

Thursday morning I saw the doctor and got to take the bandages off. There was a slight problem with my incisions. They were inflamed and the skin around them was blistered. Turns out, I am officially allergic to Derma Bond – the glue they use on your skin during surgery. The doctor said in his 8 years of using Derma Bond in almost every surgery, I am only the 3^rd person to exhibit an allergy! They had to peel the Derma Bond off my skin (think of peeling off super glue stuck to your skin) which left some raw areas on my breast (no problem – I can’t feel). I am having to change the bandages every day and put an antibiotic gauze (Xeroform) over the blistered areas. They are already looking much better and I anticipate they will heal without additional scarring.

I went back to work this past Monday. Too sore to feel great – not sore enough to sit at home. I am fine; I just tire quickly. I took a 2 hour nap after work yesterday and still slept 8 hours that night! It takes a lot of energy to heal.

So how do I feel about my softer foobs? It’s hard to say. Yes – they feel MUCH softer and easier to tolerate. They are very even in size and shape, but one nipple is lower than the other and that kinda bothers me. And there is a bit of a dimple on the outside of the left breast. They are nice but…. well, they just aren’t what mother nature gave me and I’m not used to them yet. When I look in the mirror I don’t recognize my body. Over time, I will probably grow more comfortable with them. Right now, we are still getting to know one another. I had just grown accustomed to their overly perky profile. Now my eyes need to adjust to this more natural shape.

Like most humans, I don’t embrace change very easily. I like to think of myself as an easy-going, flexible individual. Truth is, I have a hard time dealing with most change. In fact, I am probably too complacent with the status quo and linger in places way beyond my time to be there. I think it is the Tao Te Ching that says, “Cling to nothing for nothing is constant.”

Guess the foobs are giving me a chance to work on that ;)

The Exchange

2009-05-06T20:18:00.002-05:00

The exchange date has been set for June 22. On that date, the surgeon will remove the tissue expanders from my breasts and put in nice, soft implants. He will go through the same incisions from the first surgery and I don’t anticipate much pain. It is an out-patient procedure and I am expected to go home the same afternoon. I am sooooo ready… but it is still 7 weeks away.

Afer writing my last cranky post, I decided that part of the reason I was so uncomfortable is that I had over-expanded my breasts. The surgeon had been reluctant to add the last expansion injection, but I pressed him. Turns out he was right; I went too far. I could feel my breasts under my arms and I was beginning to have compromised chest strength. I went back to the surgeon and had him withdraw some saline and I immediately felt better. I am much more comfortable now. I even raced a sailboat this past weekend and my chest didn’t hinder or bother me.

Isn’t it funny that I can add or subtract saline until I find the size that’s right for me? Wouldn’t it be fun if I could change them on a daily basis based on my mood? Double D for a trip to the beach or maybe a small A cup for a dainty camisole… it’s an amusing idea to ponder.

Missing Parts

2009-04-26T21:14:00.027-05:00

I miss my breasts.

There, I said it.

Don’t get me wrong, the reconstruction is going just fine and things look good. I have great doctors, I am happy and have no regrets about my decision. You might even call the perkiness of my new breasts an improvement over the old. Yet, they are very round-looking and they will never look like what mother-nature gave me.

I try to keep a good attitude about my Foobs (Fake Boobs), but the adjustment to this new body is hard. I know things will get somewhat better after we get rid of the expanders, but the truth is I miss my old body. Having the expanders is kinda like wearing a coconut shell bra UNDER your skin. On second thought – it is EXACTLY like that.

The foobs don’t move or bounce or jiggle. They are Barbie boobs. When I lie on my side, I’m used to my breasts draping towards the bed. Now they stick straight out like a metal Viking bra! The foobs get in the way of my arms sometimes and I still haven’t found the best position for sleep. It’s all very weird and uncomfortable.

I am including a picture of the expanders that are in my breasts. You can see the oval plastic collar and the metal ring. Think about having that under you skin! Again – I know the permanent implants will be softer, but I can’t see that it will be a drastic difference. I am truly, truly thankful and glad to have foobs versus no boobs, but I really, really miss my squishy, jiggly, movable breasts. A lot.

I miss my hair. The short hair makes me feel old and matronly and I have come to the realization that it will be another year before it has any length. Everyone said it would come back thicker than it was before, but so far, that is far from the truth. Sigh. The hair is very thin and I can still see lots of my scalp. I feel like Miss Jane from the Beverly Hillbillies! I have even taken to wearing hats again. Please, I loved my thick hair more than anything and I want it back – curly or straight, I don’t care. Just don’t leave me with a half bald head.

Come to think of it, the two things I have always liked best about my personal appearance were my breasts and my hair. Now they both have changed in a major way.

I am tired of being the cancer patient now and I want to get back to normal. The problem is, I can never get back to the person I was before the cancer. The sooner I let go of that idea, the better off I will be. So what is normal for me now? As you can see, I am having an internal struggle with the external presentation - among other things. So, if I see you, I will smile and tell you I am feeling much better these days (and I really am). I will tell you that I’m thrilled with the reconstruction (and I really am). But just know that there is still a part of me working to convince myself that I am happy with this new normal.

You may have heard the saying, “Going through the motions changes the emotions.”

Well... I’m going.

I Am Not My Hair

2009-03-23T13:17:00.006-05:00

Let the battle begin! No - I'm not talking about a battle with cancer. I'm talking about the battle with my hair! I am finally beginning to get a good bit of hair on my head and it is wild. It is definitely curly and has a mind of it's own. It sticks out every which way it chooses and no gel or mousse can control it. I have bedhead extraordinaire!

I have pretty much given up hats and scarves, though I have to admit I feel kinda naked without them. I still wear them sometimes because my head gets cold and because I think I look strange with short hair. It's funny - but people are having trouble recognizing me! They are used to the hats and scarves and seeing me with short hair is a whole different look. You'd think after six months I'd have more hair than I do! That's right - it's been six months since my last chemo! It's gonna take awhile to get some length - and I wonder if it will ever be as long as it was before chemo. I don't recognize that lady in my mirror either.

But it is hair.... and it is progress.... and it will keep growing :)

The expansion process is going smoothly and I think I am done with injections. (It's kinda weird trying to decide how big you want your boobs to be...) I am pleased with the results thus far and it looks like the exchange surgery will be in late May or early June. They still feel very foreign on my chest but I assume they will eventually become a part of me. I am missing the way hugs used to feel. It now feels as if there is a pillow or something between me and the other person and I keep thinking I want to pull them closer. I hate that. Remind me that it is a small price to pay in order to have any hugs at all.

I forgot to mention that the feeling in my fingers has finally returned (thank-goodness!) but the toes are still numb. At my six-month check-up, the doctor said it could take up to a year for the toes to get better. I am used to it now and it doesn't bother me so much (hopefully the same will be true of the boobs someday) but I do wish they would re-gain feeling. Isn't it amazing, that six months later, I am still feeling side effects from those damn chemo drugs?

Ahhh... but it is springtime. The sun is shining and the flowers are blooming. I put the top down yesterday and took a long drive out to the lake and soaked up as much vitamin D as I could. There is nothing like a good dose of sunshine to brighten my mood. I may be numb in several places, but I can still feel the sun and the wind on my face.

And it is glorious.

BTW - The title of this blog post, "I Am Not My Hair," is the title of a great song by India Arie. If you have a minute, check out this song and it's lyrics on Youtube:

http://www.youtube.com/watch?v=OZH6lKxA_q0

Cancerversary

2009-03-04T16:51:00.006-06:00

Yesterday was my "Cancerversary." One year ago the doctor called to say the biopsy from my breast was positive for invasive ductal carcinoma. Upon hearing the news my husband said, “I’m sorry.” I replied, “Don’t say you’re sorry. Just say we’ll fix it.” In my head I was thinking a small surgery to remove the tumor… maybe a little radiation therapy. Never in my wildest dreams did I imagine 6 rounds of chemo and a double mastectomy were in my future.

Wow - I can’t believe it's been a whole year! Thank you to everyone who has supported me and my family during this time. Your help and your words of encouragement mean more than you will ever know.

It has been a long journey and it isn’t over yet. I’ve learned a lot of things and accomplished many milestones. When I think back over the last year, there were some pretty bad days. I find that I am much stronger in many ways, more vulnerable in others.

It is difficult to process the journey of cancer and what it means for my life. Who am I now that I have survived cancer? What am I here for? What brings me joy? What is most important in my life? I've been granted this time; what do I use it for?

Those answers will come; I know they will. For now - I'm just glad to be here.

Here They Come Into The Stretch!

2009-02-17T15:14:00.004-06:00

I love the horse races! And on President’s Day, I had good reason. I went to the races with my husband and some friends and walked away a pretty big winner. I bet on every race, ate and drank all day, and still walked away with $75 MORE in my pocket than when I began. Not bad, eh? I even hit a trifecta bet – that’s where you pick the first, second and third place horses all in the correct order! All in all, I cashed in 7 winning tickets! That’s what you call a phenomenal day at the track! We also got to see Old Fashioned (see photo) win the Southwest Stakes. That means he is now the leading favorite to win the Kentucky Derby – and who knows, maybe even the Triple Crown.

I wish I could say I won because of my genius ability to read the race form and calculate all the odds. I do know how to read the form and interpret some of the data – but let’s be honest – there’s an awful lot of luck involved! One time I bet and won money on a horse simply because I liked her name – Tricky Jo.

It occurs to me that treatment for cancer is a little like the horse races. You do the research, you weigh all the factors, you consider the odds, and then you choose the treatments that are best for you. I think I have done well in that department. I looked at all the options and made the wisest choices in my cancer treatment. I think I have done everything possible to eradicate the disease. But in the end, it still requires a little bit of luck. Did we get every cancer cell that was floating around my body? I sure hope luck is with me.

My mastectomy recovery is still going well, albeit a bit tiresome. Indeed, the first expansion rounded things out a bit and the second expansion is set for later this week. I have to say, these lumps on the front of my chest may look like boobs but they do not feel like boobs nor do they feel like a part of my body. It feels as if someone strapped two tin cans to the front of my chest with tight elastic straps and some days I am simply ready to take them off. Everyone swears the permanent implants will feel much softer and I sure hope they are right. I guess I need to adjust and set my own heart straight. These lumps will be with me until the end of May or the beginning of June. I still have a ways to go.

One of the best parts of the horse races is when you hear the announcer say, “And here they come into the stretch!” It means the horses are nearing the finish line. The tension builds and everyone jumps to their feet with excitement. Can the leader hang on? Who’s that coming up on the outside? People screaming, “Go horse! Go!” And then in a blink… it’s over.

I can’t wait for the day when I can say, “And here she comes into the final stretch of her cancer treatment.” It won’t be too much longer, but there are a few more months and a few more surgeries to go. And then in a blink – it will all be over.

Isn't it funny how I can turn even a fun day at the races into a cancer analogy? Ah well... this too shall one day pass:)

Mark Twain

2009-02-09T09:51:00.002-06:00

"Twenty years from now you will be more disappointed by the things that you didn't do than by the ones you did do. So throw off the bowlines. Sail away from the safe harbor. Catch the trade winds in your sails. Explore. Dream. Discover. "

Mark Twain (1835-1910)

Just Call Me Skipper!

2009-02-06T22:31:00.006-06:00

I'm not crazy - she did exist! Growing Up Skipper was released in 1975. Turn her left arm backwards and she grows a modest bust line, slimmer waist and becomes 3/4" taller! Turning the arm back again reverts her to the previous shape. Here she is in all her glory:

And just so you can see that I'm not making this up, here are photos of Skipper's "expansion:"

I wish my breast expansion was as easy as turning my arm around. And I wish a slimmer waist and a bit of height came along with the whole package!

What a crazy world we live in. Just call me Skipper!

Blow Up Doll

2009-02-06T21:38:00.003-06:00

I am now officially a blow up doll! I had my first expansion injection on Thursday. What a strange experience!

The doctor uses a magnet to find the metal port in the breast expander and marks its location on my skin with a a sharpie pen. Didn't you think it would be something more high tech than a magnet and a sharpie? Next he inserts a needle into the port and begins to inject saline into the expander. Since I don't have any feeling in my breasts, the needle doesn't hurt. The saline, however, feels quite strange. It's kinda hard to explain, really.... I guess you would call it tightness and pressure. Certainly not a feeling I've had before. He injected 50 cc into each breast.

I felt a little tender and sore later that afternoon, but nothing too severe. I did take a sleeping pill that night and it worked like a charm. I have been sleeping on the couch since my surgery because I am still uncomfortable lying down. I have developed a nest of pillows that allows me to sleep propped up. It seems like the couch would be an uncomfortable place to sleep, but it's not for me.

The doctor says I will probably have 3 more injections spaced out at every two weeks. Once we reach the size we want, we will sit for two months before the exchange surgery. Two months! I didn't realize it was quite so long. What a strange process this is!

I have been having these "memories" about a doll that grows boobs. You twist her arm over her head and her boobs pop out. Twist it back and the boobs go away. Did I make this up in my imagination or was it real? I tried a google search but didn't come up with anything. Did I dream this? Maybe I just have a vivid imagination! If anybody remembers such a thing, please let me know. I feel kinda like one of those dolls.

So.... one injection down and three more to go!

Cancer Bloggers

2009-01-26T23:12:00.001-06:00

I cannot begin to tell you how much this blog has meant to my recovery process. It has been such a great outlet for my anxiety and a wonderful way to keep in touch with family and friends. In fact, I have discovered a whole community of cancer bloggers on the net. Every time I have a new concern or face a new procedure, I search for the words of those who have walked before me. Their first-hand accounts are often more helpful (and more informative!) than any doctor’s explanation. Not to mention the fact that they are available 24/7 and I can access them in my own time from my own home. It is a virtual support group.

I have posted links in my sidebar to a few of the cancer blogs that I read regularly. If you have found your way here because you are facing cancer yourself, I encourage you to use the side bar as a starting point to connect with others. You’ll be glad you did.

Surgery Update:
My own recovery is still going well. The heat rash that is under both breasts and halfway down to my stomach is finally abating. The itching was driving me NUTS and I was worried that it was going to get into my incisions and therefore into my expanders. THAT would not be good! I have to say, my pain is still very prevalent. How do I describe it? Feels like they cut a hole in my chest wall, shoved a large rock inside, and then sewed it back up. Oh wait – that’s exactly what they did! The pain isn’t intense or unbearable in any way… it’s just every present. I feel okay, but I’m at that point right now where I’m tired of being sore and beginning to wonder if my body will ever feel well again. A little more time…. Just need a little more time.

I was planning to go to work for a few hours this week, but there is freezing rain outside tonight so I don’t think I’ll be going anywhere. Wish it would be a pretty snowfall, but it looks like it will be crippling ice. Keep your fingers crossed that we don’t lose power!

Eli

2009-01-18T05:59:00.004-06:00

My most tender spot in this whole cancer process has been my son, Eli. I cannot bear to think of my sweet boy losing his mother. I think losing your mother at an early age is one of the worst things that can happen to a person and I would never want to fail Eli in that way. I may not be the absolute best mother in the world , but I am a pretty good one… and I am his.

The day before my surgery, I took him to my mom’s house to spend the night. When it came time for me to leave, we hugged and he began to cry – it’s the first time he has shown such emotion about my illness. I had been strong all day but when Eli started to cry and say he was scared of losing me – I started to cry too. I can’t stand the idea of him being frightened or hurt. I wish I had been a little stronger as I’m sure my own tears were not very assuring to him. But we both pulled it together and I assured him that I would be okay. We would get through this surgery just like we had gotten through everything else. Whoa – that was a tough moment. I cried all the way home.

I have tried to keep Eli’s teacher at school informed of my progress. I figure it helps if she knows about any stresses we are experiencing. She acknowledged that Eli worries about me and took a simple action to help him with his anxiety. A day or two after I returned home from the hospital, she asked each of his classmates to make a get well card for me! It was a wonderful way to help Eli to deal with his anxiety and get a little support from his friends. Bringing home the cards really helped him feel like he was contributing to my recovery. This project was a fabulous gesture by his teacher; some adults just get it. Here they all are:

The cards were adorable and a real treat. Here are a few of my favorites:

What fun! Thank you to Eli, his teacher, Ms. Smith, and all of his classmates. The cards made me feel great!

Free At Last!

2009-01-17T17:47:00.008-06:00

I was able to get my drains removed on Friday! You don't know how wonderful it feels to be free of those juice boxes on steroids. My sister had cute little drains the size of Easter eggs, but not me. Take a look at how big those things were; and remember I had one on each side. I threw in the juice pack for a size reference. If a little bit of blood makes you queasy, you might want to skip this post:

I feel like a new woman without them. Moving is easier and sleeping is much more comfortable. Hurray for progress!

Comcast Cable Sucks!

2009-01-13T11:28:00.002-06:00

It seems every time I am sick and stay home for the day, the fricking cable goes out and it takes two days to get a repairman to the house. Why must I have such a sympathetic cable box that goes down when I am down? ARGHHHHHH! I just want to watch some stupid tv and I can’t!

Okay, okay…. Maybe this is the universe’s way of telling me that I need to do something else. Guess I’ll dive into The Shack – a novel given to me by a colleague for my recovery period. Maybe some great inspiration or introspection awaits me there.

Okay, letting go of my anger and opening myself up to the discoveries the universe has to offer today. Report back later.

Notes On Healing

2009-01-13T00:33:00.004-06:00

I would say the healing process is going well so far. I am quite sore and have a very limited range of motion, but I feel good. The drains are a real pain and they are WAY bigger than anything I ever expected; think juice box on steroids. I’m not exaggerating! The doctor was optimistic that the drains will be removed on Thursday when I see him; I sure hope he’s right.

Sitting up from a reclining position is one of the most difficult movements for me. At one point, I found myself lying flat on my back and could not get up! I laid there with my arms and legs up in the air wiggling like a dying cockroach until Ben helped me up! Geez! It goes without saying that I am much more comfortable sitting upright than reclining or lying down. This fact makes sleeping a bit difficult. I can only sleep an hour or so at a time without having to painfully sit up and readjust my body. But it’s okay because I don’t have to be anywhere nor does anybody expect anything of me right now:) I can nap as often as I need.

I slept in late this morning and then my mother-in-law came by and helped me to take a bath. I haven't had anyone help me with a bath since I was a child, but it’s hard to bath by yourself when you have drains on steroids! Plus, I can’t reach all areas of my body due to my limited range of motion. My mother-in-law is a retired nurse so she was good at helping me with this task. It felt great to wash all the hospital gunk off my body and get a fresh start.

After getting clean, I ate a little lunch and took all of my meds. Unfortunately, I went a little overboard and took too many pills at one time. I took 2 antibiotics, 3 vitamins and a pain pill. I should know better. (Shaking head.) About 15 minutes later I lost all of my lunch. Eeowww… it is NOT fun to throw up when you have a tender, sore chest. (Note to self – DO NOT DO THIS AGAIN!!) It took me a couple of hours to recover from this little mishap, but rest assured I will not repeat that mistake. I may lay off the vitamins until the antibiotics are complete. Eck!

And I have to say, the breasts look way better than I imagined they would at this stage. As I stated previously, I can see the potential for good things to happen and I am very thankful I have such great doctors. I think I wasted a lot of energy worrying about the cosmetic outcome. I still have a long way to go, and there is still a possibility of complications, but I am feeling very optimistic about the final result. It’s gonna be okay.

Yep, it's all gonna be okay.

Brief Update

2009-01-11T13:07:00.001-06:00

Super quick update…. The surgery went smoothly! There were no complications and I didn’t have an ounce of nausea in recovery. The first 24 hours were pretty painful but it has leveled out now and I’m tolerating the pain okay. I wound up staying two nights at the hospital instead of one – mostly because I needed the morphine for pain management. I also spiked a fever of 102 which had everyone worried for awhile, but it seems it was just my body’s reaction to the trauma it experienced.

The breast mounds look pretty weird and uneven, but the nipples look great. My skin has good capillary refill which is a good sign that the skin is going to survive. I can see the potential for a decent set of ta-tas once we start blowing them up with saline.

That’s all the news for now! I’m glad to be home and to have the worst part behind me! I'll post more later.

So Long Ole Gals!

2009-01-08T20:14:00.003-06:00

To my breasts:

So long ole gals. I was a skinny, gangly teenager when you first appeared - practically overnight. In the beginning, I may have been shy and embarassed by the attention boys gave to you, but later I enjoyed going braless and teasing boys with the possibility of a caress. You seldom failed at getting attention. In more recent years, I was so happy you provided nurishment for my infant son and I will never forget the contented look on his face when he fell asleep nursing. Yes, you have provided me with some great years, but it is time for you to go. I will miss you terribly and I hope your new "sisters" will provide another set of fond memories.

5:45 a.m. and I will be at the hospital ready to go. Surgery is at 7:15 and I will slide into recovery around 3:00 p.m.

Lots of dear angels out there have been asking me how they can help during my recovery. I have a hard time knowing what I might need, but I finally came up with a couple of ideas. First, for those of you who live in Little Rock, I would love it if you would bring me lunch one day. I’ll be stuck here at the house for a few weeks and I would love to share a quick meal with you. It doesn’t have to be anything fancy – just a sandwich or something small. If you can sneak away on your lunch hour one day, give me a call and see if I'm up for company.

For those of you far away, I would love it if you would post a comment and recommend a funny movie for me to watch during my days off. You know what they say about laughter being the best medicine. Also, a good belly laugh is supposed to get your heart rate up and that will help with blood flow to the skin on my newly formed breasts. I like all kinds of silly movies, new and old, so tell me about a few that tickle your funny bone.

Thanks for all the good wishes. They make me feel great. As always, I'll talk to ya'll on the other side of this mess. Think happy thoughts!

Counting Down

2009-01-07T18:22:00.001-06:00

Only one more day before the big surgery. I am a bundle of anxiety. I have had too long to think about this surgery; I’m just ready to get it over!

I met with the breast surgeon one last time – not the plastic surgeon – but the oncology surgeon that performs the actually mastectomy. Yes – I have two doctors for this surgery. The oncology surgeon removes all the breast tissue and the plastic surgeon takes over to perform the reconstruction part.

I am using a different oncology surgeon than the one that performed my lumpectomy. I have chosen Dr. Susan Klimberg because she is the only surgeon in town (that I can find) that performs a nipple sparing mastectomy. If you are uncomfortable reading about my nipples – then please skip the next paragraph!

I have chosen to have a nipple sparing mastectomy. This means they will leave my nipples in place. They won’t have any sensation, but I think it will make me feel more natural when all is said and done. There are risks, however. Sometimes, the surgeon can remove just a little too much tissue and the blood flow to the nipple is compromised. If the blood flow is compromised, the nipple could die and then it would have to be removed. That would mean another surgery- yikes! And because I’ve had a lumpectomy and there is a nice scar across my chest, there is a chance that blood flow to my left nipple is already compromised. So it is a little risky for me. But Dr. Klimberg says you can’t hit a home run if you don’t step up to the plate, so I am willing to take the risk.

I have started a course of 3 different antibiotics and a regimen of vitamins prescribed by the doctor. She wants me to take 10,000 iu of A, 1,000 iu of C, and 220 iu of zinc – That’s a butt load of zinc!!! Wish I had started the vitamins earlier, but at least I’ve got them now. Infection is probably my worst enemy in this whole process. NO INFECTION ALLOWED!

I asked the doctor if I would be ready to go back to work in two weeks since I have a desk job. She smiled and shook her head. “No darling, don’t you dare go back to work after two weeks.” You give yourself a month off.” So we shall see… Four weeks seems like such a long time.

I wish I could just skip tomorrow and go straight to surgery. The anxiety is kinda wearing me out. But I have a busy day at work and it will be a decent distraction.

Keep sending those good thoughts and prayers.

Good Bye 2008!

2008-12-29T14:43:00.002-06:00

Thanks to all of you that inquired about my sister’s surgery. Everything went well and she came through it all with flying colors. The first day after surgery was rough, but after that she managed very well. She was a real trooper. Her fitness level is amazing and we even went on a two mile walk the second day after her surgery – drains and all! Can you believe that? When they got into surgery, the doc realized that the implant from her first mastectomy 18 years ago had ruptured and had to be replaced, so she essentially had a double mastectomy. And remember – she also had a full hysterectomy at the same time. Good grief! And even though I am having a very different type of surgery than she did, it gives me hope that my own surgery will be just as tolerable. Go Janet!

The main difference between her breast surgery and mine is the fact that her implants were placed on top of the muscle – no expanders were needed and she is done. I am choosing to remove more breast tissue than she did so the skin will be too thin to place an implant directly underneath. My implants will have to go beneath the muscle. They will start by making a small pocket beneath the muscle and put expanders in place. Each week, I will have saline injected into my breasts to slowly expand the pocket behind the muscle. After three or four months of injections, the pocket will be big enough to hold an implant. We will then do a quick exchange surgery to replace the expanders with permanent implants.

Most people aren’t aware of how long a process this will be. The doctor won’t start filling the expanders until 4 week after the initial surgery and then it will take approximately 3 - 4 months to get back to the size I am now. It will be May or June when the exchange surgery occurs. I understand the “fill up” each week is not painful, but definitely uncomfortable – kinda like having your braces tightened, I suppose. I made it through 4 years of braces, rubber bands, and head gears – guess I will make it through this as well. Ugh – May or June?? That seems like an eternity from now! Will I ever get my life back from cancer?

On another note, our Christmas was just fine and Eli got the one and only thing he really wanted – a cell phone! It is so fun to see his joy as he explores this new toy. I hope some of the excitement will wear off after a month or two because I’ve already gotten more phone calls and text messages this past four days than I normally get in a month! Eli woke me up at 5:30 this morning to say the neighbor boy across the street – who also got a new phone for Christmas – had just called and wanted to know if Eli could come out and play! 5:30 a.m. is earlier than we get up for school!!! So much for sleeping late during vacation! Looks like we will have to have a talk about boundaries and manners, about when it’s appropriate to call and when it’s not. Although he’s only ten, I thinking we are inching into the adolescent years already.

I’m looking forward to kicking 2008 out the door and getting on with 2009! 2008 is not a year I would care to repeat! And although I have 3 surgeries facing me, it all seems better than having cancer and chemo treatments. This may sound weird, but I feel like I have more control over my recovery after surgery than I did from chemo. I may be fooling myself, but that’s how I feel. Incisions and sore muscles seem much easier than the general malaise that comes with chemo.

So, Happy New Year to all! I hope 2009 is full of peace, health and happiness for everyone.

Churning Urn of Burning Funk

2008-12-17T16:30:00.002-06:00

I’m in a funk today. Guess that means it’s time for a post. Don’t you all get tired of reading my complaints? I seem to write here when I am feeling down; less so when I’m happy and energized. I promise – there are happy days too.

First some good news – I had my first three-month follow up appointment post chemo and everything was normal. Wow – has it really been three months since my last chemo??? Time is moving more quickly now. The oncologist wants to see me every three months for the next two years to monitor my health status. I had no idea we would conduct follow up appointments so regularly! The only side effect still lingering from chemo is the neuropathy in my fingers and toes. The doctor says it could be another 4-6 months before that resolves. Goodness. Everything else is well. This is good news indeed.

I also saw the plastic surgeon yesterday for my final visit before the actual surgery. At this visit, we talked about all the possible complications in detail. YIKES! When reconstruction goes well, it is a very good thing. When it goes bad – disaster ensues. I still know this is the risk I’m willing to take, but it certainly leaves me a bit queasy. There are too many complications for me to list here, but just know that one small infection can ruin the whole deal. And can you believe I’ll be on the operating table for approximately 8 hours? Visions of complications floated in and out of my dreams last night leaving me tired and cranky today.

There is one more thing contributing to my funk. Another family member was diagnosed as positive for the gene mutation yesterday. God – it bums me out. That makes 4 relatives now that have tested positive. Aren’t we fortunate to have this information so we can take steps to prevent cancer? Yet why does it make me so sad? I guess I am the person who is closest to the pain of cancer right now and I don’t want anyone I know to experience it. Nor do I want them to carry the seed of worry that comes with the gene mutation. Sigh.

I leave for Nashville on Friday to help my sister after her mastectomy and oophorectomy – another victim of that darned gene. I’m sorry that my sister is having to do all of this but she has been a great sport about it. Keep your fingers crossed that everything goes smoothly.

All of this makes getting into the holiday spirit difficult, but I am trying. We cut down a tree this past weekend along with our friends, the Daughertys. This has been our tradition now for the last 8 or 9 years. The kids have a blast selecting their tree and trying to saw it down before the dads finally take over. I also got out my snowman collection and placed them around the house. I remembered one of the reasons I started collecting snowmen is that they are all happy. Think about it - you never see a frowning snowman! Their smiles make me smile:) I’ll keep making the motions and eventually the spirit will catch up with me.

Sorry to be so grumpy. I'll try again tomorrow.

Thanksgiving

2008-11-26T15:15:00.002-06:00

I am thankful for my family, my friends and for improving health.

I hope each of you have a wonderful holiday filled with family and friends.... and good health!

Happy Thanksgiving!

Army of Women

2008-11-21T13:15:00.007-06:00

ONE Million Women
ONE Research Goal
ONE Revolutionary Opportunity

Dr. Susan Love is a national expert on breast cancer and sort of the breast cancer “guru” of the day. Her books have sold millions and she has provided women with solid information about breast cancer and the options available for treatment. She has now started a new project to recruit ONE MILLION women for the Army of Women. The Army is a database of women who are volunteering to be part of research efforts aimed at determining what causes breast cancer. All women are invited to participate – those with breast cancer and those who have never had it.

By registering, you are indicating your interest in learning about active research studies in need of volunteers. You will receive periodic email updates from the Army of Women announcing new research studies looking for volunteers just like you. The email will detail the research project and who and what the researchers need. If you fit the criteria and you’d like to participate, all you need to do is reply to the email and let them know you’ve accepted the “Call to Action.”

If you accept the Call to Action, you will be contacted by an Army of Women staff member, who will make sure you meet the study criteria and answer any questions you might have about study participation. You will never be pressured to take part in any study. The decision to take part is yours — and yours alone.

This is a great way to help support breast cancer research. I hope all the women will consider following this link Army of Women and registering your name in the database. Thanks!!!

It Ain't Just A River in Egypt

2008-11-17T16:58:00.001-06:00

Well, I guess I haven’t said much about my impending surgeries. You may notice that I’ve added a counter on the right hand side of this blog. It is counting down the days till I go for my double mastectomy – January 9th. Blah.

There are some days when I feel okay about the decision and know it is the best thing to do. Other days, I am anxious and dreadful of the whole process. I don’t want to cut off one of the lovelier parts of my body. I think I can eventually get over the cosmetic aspects of the ordeal but I absolutely hate the idea of having a numb chest for the rest of my life. How weird will that be?

I had originally intended to have my ovaries removed in November – but I just couldn’t find the motivation to schedule a date. Not sure when I’ll get around to doing that. In truth, I am existing in a bubble of denial right now. I don’t think about the surgeries much because it makes me anxious. I am still trying to adjust to the current body changes I feel. I am constantly surprised that my muscles don’t behave the same way they once did. Will my legs ever return to the level of strength and flexibility I had before? I wonder if the feeling will ever return to my fingers and toes. And I seem to have no control over my body temperature. One minute I am burning up with hot flashes, the next minute I’m freezing. Will I ever sleep through the entire night again? I wake a dozen times - either wet from sweat or shivering cold. Hair. I would love to have some hair again. It would also be nice if that extra 10 pounds would melt away. I don’t recognize my own image in the mirror.

Here I am complaining once more. I don’t mean to be so negative. Life is not bad. I am grateful for a treatment plan that offers me a great chance for a cure and decreases the possibility for a recurrence. It’s just hard getting used to a new body and knowing that there are bigger changes coming.

I am not alone in this journey. My sister has also tested positive for the breast cancer gene mutation. She had non-invasive breast cancer 18 years ago and had a single mastectomy at that time. Now that she has tested positive for the gene mutation, she is having the other breast and her ovaries removed in late December. I will go to Nashville to be with her, but I can never repay all the time she spent with me during chemo.

I guess it will give me an opportunity to see the experience first-hand and better prepare myself. We are having completely different types of surgery, but I’m sure there will be many similarities. I will either walk away scared to death or more certain of my capacity to handle the surgery. Hopefully the later of the two:)

More details about the surgery later. For now…. denial reigns.

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Chemolicious!

2008-11-08T20:16:00.003-06:00

Cancer - and breast cancer in particular - is a big commercial business. There are hundreds of t-shirts, hats, mugs, you name it, with great cancer slogans on them. Below are just some of the funnier ones I've seen.

* Eyebrows Are So Last Year
* Bald is the New Black
* I Have Cancer - Cancer Doesn't Have Me
* I'm Sick & Tired of Being Sick & Tired
* Chemo - Breakfast of Champions
* Nice Try Cancer, But I'm Still Here
* Your Boyfriend Likes Rubbing My Bald Head
* Does This Shirt Make My Head Look Bald?
* If I had known how much work it be,
I would have never gotten cancer
* Bald Chicks Rule
* Not Just Surviving. LIVING!
* Chemo - All the Good Kids Are Doing It
* I'm Confused. Wait Maybe I'm Not
* I Make Chemo Look Good
* I Pay My Oncologist Big Bucks for This Hair Style
* Friends Don't Let Friends Fight Cancer Alone
* Cancer is Not Contagious - But My Spirit Is
* Oh Yeah, We Are Talkin' Cancer Glam
* Fight Like A Girl
* Unbeknownst to the Mosquito I Just Had Chemo
* One Day Pink Will Just Be for Princesses. Let's Find A Cure
* This Is What A Cancer Survivor Looks Like
* I Beat Cancer Like It Owed Me Money
* Chemo Ate My Eyebrows
* Breast Cancer Isn't for Sissies
* Fighting Cancer and Still Fabulous
* I Already Kicked Cancer's Ass - Want To Be Next!?

And last, but not least...

* Chemolicious!

(Thanks to Wander Linda, another breast cancer blogger. I stole this list from her.)

Find a Cure

2008-10-30T13:17:00.001-05:00

Too cute... had to share.

Wisdom

2008-10-29T17:26:00.004-05:00

I keep thinking that I will have some kind of personal epiphany due to my cancer journey. I mean, aren’t I supposed to learn some valuable life lesson from this adversity that I will carry with me the rest of my life? Aren’t I supposed to have a life altering “ah-ha!” moment that changes me forever? Now that I have joined the cancer club, I pretty much expected the clouds to part and a ray of light would shine down illuminating the great “cancer gods” who would reveal the meaning of life to me - or something prophetic like that. I was hoping a clever, Lance Armstrong-like slogan would form in my head and I would be able to hand out sage advice to all those around me who have not stared the “Big C” straight in the face.

I got nothing.

Well, that is, I got nothing clever. I have learned a few things about myself and about my life that I didn’t really notice before.

I never fully realized what wonderful family and friends I have until I got cancer. I never realized how MANY friends I have nor had I ever truly realized the depths of my friendships. I never appreciated how many intelligent, funny, and caring individuals I know! How lucky I am to have family and friends that are so wise and witty and that show up when it matters most. Your outreach to me has made a significant impact; each and every one of you has touched my heart in some special way. It sounds kinda weird to say, but I felt validated as a person recognizing all the good friends I have. It made me think that maybe I’m not such a bad person after all :) It feels good to know that such wonderful people love you, care about you, and are concerned for your safety. I had a true Sally Fields moment where I realized, “They like me – they really like me!”

I realized something else important. I’m not sure I have paid enough attention when others are in a crisis. Have I shown up when it was important? I don’t think I’ve been the best at sending cards or meals or making phone calls. My mailbox and inbox have stayed full since my diagnosis; I now know how much a simple card can mean. It seems every time I was feeling low, a note of some kind would arrive and lift my spirits. How hard is that? Why haven’t I been more attentive to these kinds of things? And many people went way beyond a simple note. You brought meals, you sent flowers and gifts. You listened to me cry or bitch or you made me laugh. This whole experience has taught me I need to be more aware of what’s happening to other people and reach out to them – even if it’s just in a small way. I will do better. In the words of the dumb blonde, “It isn’t rocket surgery.”

So…all of this is important stuff – even if it isn’t clever or earth shattering. Maybe those clouds will still part, maybe the epiphany will eventually arrive. If it does… I’ll be sure to fill you in.

801

Are We There Yet?

2008-10-27T00:23:00.005-05:00

I had the notion that as soon as I was one week past my last chemo that I would be feeling brand new again and ready to celebrate. In truth, it is just this past week that I have begun to feel some real strength and stamina. What are we now – 7 weeks out? My fingers and toes are still pretty numb and are a constant reminder that my body is still recovering. However, I’m excited to report that I’ve regained complete feeling in my pinky fingers!! It leaves me with hope that the other digits will be returning soon. Fine motor skills like buttoning a shirt or fastening a necklace are quite difficult. The fingernails continue to decay, but I’m not sure if they will actually fall off. The top half of the nails is dead but the nail beds seem strong and are producing new growth. Maybe the dead part will just “grow out” and I won’t ever be completely nail less.

My poor little head is covered with a good bit of fuzz now (most of it grey, unfortunately!) and a tiny bit of hair is starting to crop up on my legs, underarms and private parts (yes – I lost all of that hair too!) I only have a few eyelashes left and something tells me it will be awhile before they return. I wonder what it’s like to wear fake eyelashes? I don’t believe I’ve ever tried them. And even if I put them on they’d probably melt off right after the first hot flash. Man – those hot flashes are a bitch! Mine start at the base of my skull and within an instant my whole head is covered with sweat, which is weird because I have never been a heavy sweater. Like many fine, southern women, I don’t sweat, I dew, so this is a very new phenomena for me! Now I can handle them fine during the daytime, but they sure mess up my sleep at night. Argh – they are so unfair.

I have been trying to exercise as much as possible to rebuild my strength. I get to the gym when I can and try to walk on the other days. I have to say – the exercise feels good and I can tell a difference in my stamina already. It’s always hard to make myself get up and go but I always feel much better afterwards. As my sister-in-law Ruth says, you never leave the gym saying, “That was a waste of time. I wish I hadn’t done that.”

So I’m starting to feel more like my old self, but I’m not completely there yet. The end of chemo was a huge milestone, but I’m just not ready to celebrate. The big surgeries still loom ahead and I am having a hard time thinking about them. In fact, I don’t want to think about them at all. I just want to feel normal again. I want to have hair, and fingers that work, and strength in my legs. And I want those damn hot flashes to go away.

Okay, okay – I’ll settle for 3 out of the 4.

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The Happiness Grenade

2008-10-19T17:10:00.003-05:00

Happiness often comes through simple pleasures. Take the Happiness Grenade, for example. My son Eli, made this Happiness Grenade for me when I was in the hospital earlier this summer; it is one of my most prized possessions. He pulled together all the parts and assembled it on his own. Just pull the pin and throw – and happiness will spill out everywhere!

Where in the world did he come up with this idea? My son is somewhat obsessed with guns and weapons, yet he has a very sweet, nurturing heart. The Happiness Grenade is a perfect symbol of irony for him.

The most amazing thing of all is – it really works! I never fail to smile anytime I look at it :)

The Race for the Cure

2008-10-15T15:25:00.011-05:00

The Susan G. Komen Race for the Cure in Little Rock is one of the biggest in the country; they typically have over 40,000 people each year. So I had absolutely no plans to fight that crowd and walk (or run) in the event. My plan was to register, donate my money, pick up my t-shirt, and go have breakfast somewhere the day of the race! But it seems my friends and family had a different idea!

My friends and family got together and organized a party of folks to walk in the Family 2k Race in my honor. They finally let me in on this plan the Monday before the race. I was immediately worried because my stamina is so low I was afraid I wouldn’t be able to walk a mile and half. There was even talk of pushing me in a wheel chair, but I quickly nixed that idea! I got to the gym every day that week and walked the track to make sure I was ready.

The day of the race we all met at a friend’s house to park our cars. My brother-in-law, Adam, owns a limo as a part of his auto repair business and he came to pick us up and take us to the race. Now this is the way to travel to the Race for the Cure! No parking problems, no walking 10 blocks to the start line, no standing around. Oh no – we were dropped off one block from the start line minutes before the race began. Fabulous!

To make the day more festive, we all donned bright orange cowboy hats on our heads. No- we aren’t Oklahoma football fans… You see, when I was first diagnosed with breast cancer, I kept saying, “Everybody circle the wagons and shoot!” It was my way of saying that I needed everybody to gather around me to help fight this disease. Also, I seemed to gravitate towards the color orange once I lost my hair – I’ve particularly clung to one orange colored scarf that is my favorite. So – the orange cowboy hats were a perfect salute to my cancer journey. Below are a couple of the little cowboys that walked with us. The biggest one (Eli) belongs to me, the other two are family friends. Eli covered his face with his pink bandana and called himself the cancer bandit!

The race was amazing. When we got out of the limo we could see a river of people flowing by. As we merged into the stream, I quickly realized there was an ocean of people as far as we could see – both ahead of us and behind us. It was unlike anything I have ever seen. Our orange hats turned out to be a great idea; they were so bright you could easily spot anyone in our group! And I have to tell ya, it was the most orderly group of 46,000 people I have ever been in. No one was rushing or pushing – no one ever even bumped into me! Look at all the people:

The walk was slow but fun – it took us about an hour to complete. Every quarter mile or so there was a band playing or a radio station blasting tunes. Supporters - mostly men, but women too - lined the sides of the streets and clapped and cheered as everyone walked past. One exciting moment occurred when we were crossing the Broadway St. Bridge over the Arkansas River. The bridge was swaying so heavily under all the foot traffic that it was literally making us stumble! We paused to take a picture of the river but quickly decided to forget the picture and get the heck off that bridge. I know they are meant to sway like that, but yikes!

It was very heartwarming to see all the signs people were wearing on their backs. The signs told who they were honoring or memorializing with their walk in the race. The signs said things like, “I love you Sara” or “I miss you Mom,” (which brought a tear to my eye.) And imagine how surprised I was to run into some people I know who had my name printed on their backs! I can’t tell you how much that meant to me. I also received emails later from two friends saying they had worn my name as well. Wow.

At the end of the walk, they had a special finishing “gate” for survivors. My sister and I ran the gate together. Not only is she an 18 year survivor of breast cancer herself, but she has made the entire journey with me. In fact, Ben and Eli should have run the gate with me too. Although they’ve never had breast cancer, they are survivors of the disease.

When the race was over, Adam picked us up in the limo (again – one block from the finish line!) and took us back to our cars. We all trekked over to my house where a host of chefs (Ben, Dan, Janet, and my Mom) had prepared a sumptuous brunch of baked eggs, cheese grits, homemade biscuits, apple soufflé, fruit salad, green salad, assorted baked goods, and a small pot of cowboy beans. Of course we had bloody mary’s and mimosas too! I drank my fair share of champagne and had to take a little nap before the day was over :)

The organizers of the Little Rock Race for the Cure have every reason to be proud. It was such a well run, well supported event. Over 46,000 people participated and raised over 2 million dollars!! It is so encouraging to see so many people united over a single cause. It is a truly unbelievable event.

All in all it was a wonderful day and I am so glad we did it. I felt so honored by everyone that attended. I’ve said this many times and I’ll say it again – I never realized how many good friends and relatives I have until this disease showed up at my door. If I gain nothing else from this journey – I know I am loved.

Now really – can you ask anything more of life than that?

(Okay… I have to go find some tissue now!)

607

Bubbles!

2008-09-30T17:20:00.005-05:00

Not all my cancer journey memories are bad ones. In fact, chemotherapy helped me to rediscover the pleasures of a bath. Now honestly - when is the last time you took a bubble bath? I took several luxurious soaks in a tub full of bubbles during my last recovery period. I had truly forgotten how fun it could be! I felt playful and childlike, then womanly and flirtatious. The bubbles felt so soft and silky against my skin. First, I built a bikini out of bubbles to cover all my “lovely bits” and then I added a glamorous, white mink stole that slid gracefully off my shoulders. My toenails, painted resilient red, were a beautiful contrast to the white sparkling foam as I pointed my leg up in the air like an old-fashioned movie star and watched the bubbles spiral down. Squeal! It’s fun to be a girl!

The bubbles were a gift from my colleagues at the National Alliance of Children Trust Funds. While the warm wishes came from everybody, the actually gift shopping was done by my friend, Martha Reeder. She is a good listener and took notice when I mentioned I liked to take long hot bathes when recovering from chemo. So thank you, Martha, for helping me to remember a simple pleasure I had forgotten.

The Good, The Bad, and The Ugly

2008-09-29T16:09:00.002-05:00

THE GOOD – My taste buds are back! Everything tastes really good to me. So good, in fact, that I find myself overeating at every meal. In fact, I am ravenous! I guess my body is rebuilding and needs the extra fuel. Having whacked out taste buds is really bizarre. It feels like you are chewing food wrapped up in a piece of gauze. Sometimes you can get a hint of taste coming through, but mostly it feels like chewing on tasteless cotton. Other times, it doesn’t taste the way you anticipate or remember the food to be. You put a piece of chocolate in your mouth expecting creamy goodness and instead it is bitter and feels like glue on your tongue! Yes – having my taste buds back is a true joy!

THE BAD – the numbness in my hands and feet is still present. In fact, it may be getting worse. I can hardly button a shirt or put on my earrings. In addition, my nail beds are really sore. I know it’s weird to say I have fingers that are both numb AND sore at the same time, but that’s how it is. I’m thinking it will be a few more weeks before I have full sensation again. The cankles are mostly gone, but I still have some mild swelling in my feet and legs. They are worse at the end of the day, naturally.

THE UGLY – My tummy is way bigger than it used to be! Some of it may be water retention like the ankles, but in general I have gained about 7-8 pounds since I started chemo. It’s not very attractive when your stomach sticks out further than your boobs! Of course they are 45 year old boobs that are racing towards my navel, but still! If my stomach is still bigger than my boobs after the reconstruction – then we will really have a problem! Even my “fat” jeans are feeling snug. (And all the ladies know what I mean when I refer to the fat jeans.) I was considering the surgery where they use your stomach tissue to reconstruct your breasts, but the surgeon says there’s really not enough there for two breasts. (Did he really look at my stomach???) So I either need to start binging so I can grow another breast or I need to get that exercise program going pretty quickly!

Cankles!

2008-09-25T23:19:00.003-05:00

What a week this has been. First, I thought I would be through with side effects by now, but strangely enough my legs, ankles, and feet have become really swollen. It’s terrible - I have cankles! After putting up with it for several days I called the doctor to see if it was normal and how much longer I could expect it to last. They had me come in for a blood test and an x-ray to make sure my heart was not enlarged and it appears everything was okay. I’ve been propping my feet up every night and I think it has helped. The swelling has improved, but it is still present. My legs look and feel really funny – cankles are sooo attractive. Oh well - just call me the side effect queen! Ugh -I think I’ve had every side effect possible.

In addition to seeing the doctor for the swelling, I have had four other doctor appointments this week. I saw the eye doctor Monday, a breast surgeon on Tuesday, a pain specialist on Wednesday and the plastic reconstruction surgeon on Thursday. Good grief. I will also see a gynecologist next Monday.

The bulk of my doctor visits relate to the bilateral mastectomy. If you’ll remember, I have been diagnosed with the BRCA2 breast cancer gene mutation. That means I have a 64% chance of developing breast cancer AGAIN by age 70. Furthermore, the gene leaves me with a 44% chance of developing ovarian cancer by age 70. I have decided that these risks are too great and the removal of my ovaries and breast tissue is the best defense. The question now is – how?

There are about a dozen different ways to remove your breasts and rebuild them. So I have a lot of decisions to make. There are different techniques for removing the tissue and different options of rebuilding. You can have a skin sparing mastectomy, a nipple sparing mastectomy, a subcutaneous mastectomy. You can rebuild using implants or you can rebuild using tissue from your stomach, your butt, or your back! You can choose to create a new nipple and tattoo the areola, you can try to save your own nipple, or you can decide not to have nipples at all! There are soooo many options. And of course each option comes with its own set of pros and cons.

I was hoping to have my ovaries removed at the same time as the mastectomy and reconstruction, but the first surgeon has said no to this idea. That means I am facing three separate surgeries – one to remove the breasts and put in tissue expanders, one to remove the expanders and put in the permanent implants, and one more to remove my ovaries. That’s a lot of surgery.

I am only in the information gathering stage so I have no idea what or when this will all occur. I certainly have a lot of decisions to make… and a lot more appointments to attend. I’m thinking of getting a cot and moving into the Cancer Research Center!

265

The First Day

2008-09-14T22:14:00.004-05:00

I have neglected to let everyone know that I made it past the fever! I am over the last hump! It only lasted a few days this time and the bone pain was less severe. I had a bit of a melt down Wednesday night as I was sick and tired of being sick and tired. In fact, I've been emotional all week. I find myself tearing up over the slightest thing - a report on the hurricane evacuees, a dead plant in my front yard, a touching act on America's Got Talent (I'm not kidding.)

I'm not sure if it's fatigue, hormones or what. I think maybe the stress of this whole ordeal is finally letting loose. My doctor warned me that I might have some feelings of sadness and she was right. I don't feel depressed - just emotional. I was unsteady there for a few days and I couldn't really tell you why. Part of the emotion is just a big feeling of relief - knowing I have reached the finish line for this leg of the race. Part of it is knowing that you got a scary glimpse of death and that you aren't ready to go there yet. I will save that discussion for another day.

God - I am done with chemo!!!!! I am just now really beginning to appreciate that it's over.

I found I have lost a great deal of strength and stamina. My legs are like wet noodles and walking up the stairs leaves me winded and my thighs burning! How did this happen? I can't stand or walk for very long without my legs starting to shake. In addition, I am experiencing some fairly intense neuropathy in my hands and feet (a chemo side effect) and if I stand too long my feet start to get that pins and needles feeling. I had great intentions of going to Washington D.C. this Monday for a meeting, but I realized that I am just too weak. I'm really disappointed that I couldn't attend the meeting but I don't think I could make it through the airport without collapsing. I took a trip to Wal-Mart on Saturday and had to take a 2 hour nap when I got back! It's gonna take some time.... and exercise.... before I regain my strength.

I was pretty weak Thursday and Friday but I probably could have made it to work for part of the day. I decided that I needed the time for myself instead. I did some short errands and tried to reclaim my house from the mess that has piled up during my last recovery. I unpacked the suitcase that has been sitting on the floor since my hospital stay. I did all my laundry and put it away. I did all the things I need to do to be ready for work on Monday. It is time to start back on the path to normalcy.

I have to tell ya, Monday feels like the first day of the rest of my life.

Here we go....

072

Still Here

2008-09-08T18:38:00.003-05:00

So here we go again. The low grade fever continues. I went to the doctor's office for a blood draw and chest x-ray and everything checks out okay. I got sent home with antibiotics to wait and see what happens next.

I hate the fever. It makes me feel rotten. Maybe I am just a big baby, but the minute my temperature goes up I feel like the world is ending. I'm uncomfortable lying down, uncomfortable sitting up. I don't want to talk, I don't want to move, I don't want to be awake. Do other people tolerate it this poorly?

Ahhh... but I have the percocet and they do make me feel much better.

Just a few more days and this will all be gone. Just a few more days and this will all be gone. Just a few more days and this will all be gone. Stay tuned.

Recovery Road

2008-09-07T22:17:00.004-05:00

Thanks for all your comments!!! They have definitely helped! This recovery has been going smoothly and I have been feeling decent - until today, that is. Today I have that pesky, low grade fever. And there is a small cough. Sigh. I will call the doctor Monday morning to see what she says. PLEASE, PLEASE don't make me go to the hospital again.

More later....

Come Out, Come Out, Whoever You Are!

2008-09-01T21:52:00.006-05:00

TUESDAY IS THE LAST CHEMO!!! Wahoooooo!!!

I fully dread it but I am SO glad to be at the finish line.

So - in honor of the last chemo, I am requesting that
ALL READERS LEAVE A COMMENT ON THIS POST. I'm serious ya'll.

Come on now - I know you feel a little silly or don't know what to say. Just say a simple hi and sign your name. I know there are lots of you that read but never comment. It will please me to no end to find out all who come here. Call me an attention hound, but it will help me to get through the next few days to see all of your names. Indulge me please!

And just because you've told me before that you read, doesn't mean you are off the hook. And incompetence isn't an excuse either. If you have trouble leaving a comment, click the Label titled "Leaving Comments" on the bar at the right hand side of the page. You will find instructions there to help you.

Ali Ali Oxen Free! Come out, come out whoever you are!

764

Who's Counting?

2008-08-19T23:14:00.004-05:00

Following is a list of side effects I've expereinced after the last chemotherapy infusion. I'm making this list for myself - as a way to remember.

1. Bone pain, bone pain, bone pain.
2. Tearing, watery eyes
3. Runny nose
4. Oral thrush
5. Yeast infection
6. Lost of all taste (How I long to enjoy a simple glass of water!)
7. Sore nails
8. Indigestion
9. Other tummy troubles
10. Phlebitis of the arm at the site of last infusion (a rash/burn along the last vein used)
11. Hot flashes
12. Fatigue/loss of stamina
13. Mood swings

Top 5 Fun Things About Being Bald

2008-08-19T23:02:00.003-05:00

5. Soooo easy to get ready in the morning.

4. Rain? Humidity? Who gives a damn!

3. Getting to play the part of Sigourney Weaver while acting out the movie "Alien" with your 9 yr. old son.

4. Discovering a mole on your scalp in the shape of Elvis Presley.

And the best part about being bald....

5. Free Air Conditioning!!!

(with apologies to David Letterman)

535

Pain Free

2008-08-14T13:57:00.004-05:00

I am pain free today! Ahhhhh.... it feels so nice. I hope I am never a sufferer of chronic pain - I don't think I would make a very good patient. I hate to be such a complainer - but the bone pain I've been experiencing is awful. You can't get comfortable no matter how you sit. It's a random, roving pain that is sometimes throbbing and sometimes stabbing. It's mostly in my knees, hips and legs, but no bone is immune. I feel stiff and sore like a 90 year old lady with arthritis. The pain meds certainly take the edge off, but then I feel sleepy (and constipated!) I was so frustrated with the pain yesterday morning that I sat in the bath tub and cried! And today it's gone; it left as quickly as it came.

While I was in the midst of all the pain the thought of having one more infusion felt like an overwhelming task that I could not accomplish and left me depressed. So I started thinking about the celebration I would have after recovering from the last chemo. Now we're talking fun! Maybe a BBQ picnic with lots of food. Or maybe a more elegant affair at the house with fancy finger foods and a hired bartender. I may make you wear a funny hat, play silly games or learn a new dance. I have lots of different ideas... but basically I want to have a huge party and invite people from all walks of my life. I won't spell out the details now, but just know that it will happen and you are all invited when it does! It gave me pleasure to think of something fun - of an end goal - and it made the time pass a lot easier. I also found working on a crossword puzzle while waiting for a pain killer to kick in is good distraction!

I made a "practice run" to work today. I'm overwhelmed at all there is to do there. Anyone reading this who works with me - please be patient a little more. It's hard to get re-started. I've been out almost three solid weeks now. My friend Leslie suggested I start by making a list. Number one on the list should be "Make a list." Then after you add four or five more items, you can scratch off number one on your list! Immediate accomplishment! Think I'll try it!

Okay - better get to that list. People are waiting... Just wanted everyone to know the pain is gone and I am working on rebuilding my strength and stamina.

Just ONE MORE TO GO. I can do this!

445

Hanging On

2008-08-11T19:17:00.003-05:00

Hanging on and still trying to recover from chemo #5. The great news is NO FEVER. Every bone in my body hurts and I have no energy - but as long as the fever stays away I can tolerate the rest. Thank goodness for the percocet - it dulls the pain and allows me to relax.

Hoping I'll be on my feet in another day or two.

More Details Than You Ever Wanted!

2008-08-06T13:08:00.006-05:00

I saw my doctor yesterday regarding my continuing treatment plan. We will never know exactly what caused my fever. It was either a reaction to the chemo drug, Taxotere (a highly unusual response), a virus (which seems unlikely for 8 days and that occurred before my white count ever dropped), or a reaction to the Nuelasta shot - which helps to rebuild your white count after it drops from the chemo.

The doctor suggested the following options listed here in order of her preference:

1. Do taxotre again without the nuelasta shot. This leaves me with a 1 in 3 chance of winding up neutrapenic (low white count) and thereby vulnerable to infection…. And infection would put me in the hospital on iv antibiotics again and be potentially life threatening.

2. Do taxotere again and instead of the nuelasta, I would take nuepogen shots daily for 10 days. Nuepogen is the short acting version of nuelasta. So if I start to have a bad response again, we could stop the drug and it would be out of my system in 24 hours. The down side - daily injections in my tummy:(

3. Go back to drug #1 which we know I can tolerate well. This option is about 2-3% less efficacious as option one, but has less dangerous (and more tolerable) side effects.

4. Quit. She says 4 sessions (which I’ve had) is the minimum standard. Less than 4 is not efficacious, 6 sessions is more efficacious - by maybe 3-4%.

I have agonized over this decision the last few days and have not been able to concentrate on work. (I am performing so badly at my job right now. I feel terrible about it.) I have been really emotional about the decision making and I keep tearing up every time I try to talk about it to someone. It's kinda hard to have a productive conversation when you are crying.....

So... stopping is not an option. Yes - days out of the hospital I was frustrated and tired and said I was ready to quit. I have some perspective now and know that I want to keep going. Yet - I HATE the idea of winding up sick in the hospital again. I was miserable! On the other hand, I don't want to have a recurrence 3 years down the road and live with the regret of not having tried the most effective treatment because I was afraid of 10 days of fever, bone pain and a trip to the hospital. Hmmmm.... 10 days of illness vs. years of life on earth. The answer is becoming clearer now.

I finally pulled it together this afternoon and have decided on option #2 - Taxotere with the daily nuepogen shots. I want to know that I did everything that I could to prevent a recurrence. I want to pursue the most effective and aggressive treatment that has the best statistical outcome.

To do Taxotere without the Nuelasta comes with a risk of life threatening infections that I'm not willing to chance. To do it with the Nuepogen shots comes with some additional pain and hassle and still the possibility of fever and bone pain - but it is not life threatening and allows me the option to stop if my blood counts are okay and the pain is too bad. I will still have to play the game of checking blood counts and cultures to make sure the fever is not indicative of an infection. I could very well end up in the hospital on IV antibiotics again if the fever doesn't abate quickly. But overall it feels like the safest way to reach my goal.

God I hate making decisions like this!

So the infusion is Thursday morning at 10:00 a.m. Ben will have to get instructions on how to give me the shots. At least I can do them at home vs. a daily trip to the doctor. I also got daily shots in the stomach while I was in the hospital and they didn't hurt. It just sounds awful because I think we all grew up with the horror stories about what would happen to you if you were bit by a dog with rabies! Our parents used the threat of 10 days of stomach shots to keep us away from stray mutts! Am I right? Although the shots don't hurt -they leave one heck of a dark black bruise. I will have a very colorful stomach!

So wish me luck. Not sure what the next week will bring or when I will feel like posting again. Please send positive thoughts, or prayers, or do a voodoo dance that will keep me out of the hospital this time. I can take some pain and discomfort - just don't want to be incarcerated and tied to an IV pole again!

As always - I'll talk to you from the other side of this treatment.

274

A Hospital Is No Place To Be Sick

2008-08-01T16:48:00.006-05:00

I am still feeling good and sooooooo glad to be out of the hospital. I’ve halfway lost my desire to tell you all the horrors of my hospital stay – I mostly want to forget all about it! But I will touch on a few disturbing highlights for you.

My infusion was on a Friday. I felt completely fine when it was over – absolutely no nausea! Hurray! I had some severe indigestion late that night, but I was fine again on Saturday morning. But come Sunday, I felt as if I’d been hit by a truck. I had no energy and I started feeling uncomfortable in my bones. By Monday night, I realized I had a slight fever – maybe 100 degrees. Tuesday was worse; the fever hit 101 and I was miserable. My bones ached like crazy. Went to the doctor for a blood work up and everything was normal. Wednesday – more of the same. Saw the doctor again and she prescribed antibiotics. Thursday – fever is still present and I am crawling out of my skin with bone pain. The doctor decides it’s time to admit me to the hospital. I am to start off at the infusion center receiving IV antibiotics while they try to get me a room in the hospital. They are afraid I have some kind of infection.

Things were going pretty smooth in the infusion center, until suddenly I start to feel dizzy and warm. A nurse from across the room sees I’m feeling uncomfortable and comes to check on me. “Uh-oh,” she says, “you’re having a Red Man reaction.” Apparently my face was turning bright red and I felt like it was burning. All the nurses gathered around to view the novelty of my “red man” flush. They quickly pushed some Benadryl into my IV which caused me to get even more dizzy and light-headed. As soon as the infusion was done, I stood up to go to the bathroom. As soon as I got there, I knew I was going to be sick. Yep – puked my guts up. It was horrible. Please explain how I can get through 4 chemo treatments without puking, yet some simple antibiotics and Benadryl make me hurl. Geez!

The hospital is at capacity and they don’t have a room for me. Rather than wait around for hours, I chose to go home. I was feeling pretty miserable and there was more puking… I’m not really sure why. I still had the fever and bone pain. I had a hard time sleeping and somewhere around 2:00 a.m. I finally collapsed from exhaustion.

We return to the hospital Friday morning to check in. I am rested and feel a little better. They check me into a room and the nurse spends the next HOUR asking me the most inane set of questions. Do I have transportation home? Do I have air conditioning, do I have the means to buy proper nutrition, who does the grocery shopping in my home? Please! In front of my husband, she asks me if anyone makes me feel unsafe in my home. My answer – “Sorry – I can’t talk about that right now.” How would you like for the staff to address you while here? “Your Royal Highness would be fine.” What foods do you dislike? “Collard greens – I hate collard greens.” Guess what was on the first lunch plate they brought me? Collard greens!!! Why are they asking me all these questions!! Start the treatment already. I’m sick!

The first bag of antibiotics goes smoothly. The nurse says she’s leaving for lunch and will be back at 1:00 to hang the second bag. The second bag is the antibiotic that gave me Red Man flush in the infusion center. They told me next time I should slow down the drip rate from one hour to two hours. The nurse notes this instruction and leaves.

When she returns, she has the antibiotics in one hand and a blood draw kit in the other. I can just tell by her body language that she is feeling uncomfortable about drawing my blood. Sure enough, after 45 minutes of prep time, her stick failed and she had to get someone else to try. Argh. After 30 more minutes she returns with someone else who is able to draw blood on the first try. Good. That part is done. I now drift off to sleep. I wake up and watch some tv. Around 5:00, I look at my bedside table and notice that the bag of antibiotics is sitting there – she never hung it up!! For heavens sake – the whole reason I’m here is for antibiotics. It’s 5:00 and I haven’t even had one full dose of the prescribed treatment! But there’s more… After the nurse hangs the bag and leaves, Ben notices that the IV pump is set to administer the dose in one hour – not two as requested! Thank goodness he was there and knew how to read the machine or I would have been red and puking again!

The whole stay was full of little things like that. Because it was the weekend, I saw a different person every day. I never really knew who was in charge of my treatment plan. It was frustrating. One night, they came at 8:30 p.m. to take me for a CT scan. No one had told me a CT scan had been ordered or why. I refused to go until they had a doctor call me and explain what the test was about and why I needed it.

Every day, my white blood count continued to rise above normal levels. This rise is a signal of infection somewhere in the body – yet I didn’t have any symptoms other than the fever. All tests and cultures came back negative. By Sunday, I was fever free. Hallelujah – 7 days of fever was enough for me.

On Monday, the white blood count rose again but my temperature was normal. What was the source of this mysterious infection? Finally, a nurse practitioner came in and asked me if I’d had a Nuelasta shot with my last chemo. I did. “Oh – then that explains your elevated blood count,” he said. Some people apparently have a bad reaction to the shot that is meant to help rebuild your white blood cells after chemo. Some people can have a flu-like reaction. Since we couldn’t find an infection, it seems likely that the fever, bone pain and elevated white count are related to the Neulasta. But who can know for sure???

A second nurse-practitioner, who had never seen me before, completed the discharge papers to send me home. I know it sounds insane, but it's true.

The question now – what’s next? I sure as hell don’t want to go through all that again. Was it really the Nuelasta? Was it the chemo drug (taxotere)? Was it an infection? Can I take taxotere without the Nuelasta? If I can’t tolerate this chemo drug, then what? Do we go back to the first drug? What if I quit now? Have we gained anything from the four sessions that I’ve completed? I have a lot of questions. And it’s already time for another infusion next week. Ugh.

No. I don't want to do this any more. You took a fairly healthy young woman and made her really sick. This is starting to go outside my boundaries of acceptable risk. And yet, who wants to have cancer 5 years down the road and regret that you didn't finish the treatment. Would two more rounds mean the difference between life and death? This is heavy stuff.

Did I mention that my hair is falling out again? This time I think the eyebrows and eyelashes are coming out. Bummer.

Hopefully I will get some answers from my doctor next week. I definitely have some tough decisions to make in the next few days. All I know for sure - I feel great now and I'd like to keep it that way!!!

190

Home Sweet Home

2008-07-29T18:16:00.003-05:00

I am home! I feel great and the fever is gone. We were never able to identify any kind of infection in my body. The whole episode is now being credited to the Neulasta shot I was given at my last chemo. The Neulasta shot is supposed to help build your white blood cell count after the chemo drugs have knocked it down. It seems my body had a bad reaction to the shot which caused the fever and the increased white blood cell count. Go figure! I don't think anyone really knows for sure....

The hopital experience was very frustrating and I will probably post a ranting diatribe at some point. Right now I'm just happy to be out of the hospital. There is nothing better than sleeping in your own bed. Ahhhhhh.

Incarceration

2008-07-27T12:23:00.004-05:00

Well, I'm still incarcerated in the hospital. I didn't have fever all day Saturday and don't have any today. Yet my white blood cell count continues to rise (23 on Sat., 27 today, 13 is normal). The high white count indicates there is an infection somewhere in my body. This mysterious infection is not showing itself in any way - no sore throat, no pain with urination, no stomach problems, etc. So here I stay with IV antibiotics until the count goes down.

Being in the hospital is no fun. Someone is always waking you up to stick a needle in you. You can not rest. I feel like a neglected dog in the back yard chained to an IV pole; my chain only goes so far:) Fortunately, I feel decent today. It's the first day I've felt well since the last infusion.

There is the possibility I will get a central line inserted tomorrow (Mon.) and be allowed to receive the antibiotics at home. They have mentioned I might have to receive the medicine for as long as 14 days!!! 14 days!!! Good grief.

All of this is giving me pause about completing the last two rounds of chemo. Unless they give me a truly compelling reason I think I will quit. We'll see what the doctor says...

So looks like I will be out of commission for a few more days. I'll provide an update when I have a chance.

023

Hospital

2008-07-24T12:52:00.003-05:00

Can't kick this fever so the doc wants to admit me to the hospital for IV antibiotics. Not sure how long I'll be there, but don't expect any news for a few days. Hopefully this is the ticket to making me feel better.

Later.

Down and Out

2008-07-23T13:54:00.003-05:00

Hey all. Chemo number four has knocked me flat on the floor. It's wednesday and I still haven't recovered from the infusion last Friday. I've been running a fever of 101 - 102 since Sunday. I am miserable. My whole body hurts. Four days is a long time to have a high fever.

Had blood work done and everything is normal. Waiting to hear from the doctor today to see what's the next step. I'll write on the other side of this misery... but for now send good thoughts my way (or the calvary, or hemlock, or something!)

More Love

2008-07-14T12:54:00.006-05:00

I've been meaning to post this photo as well.... Ben attended the Y-flyer National Championship Regatta back in June. I couldn't go because it coincided with a chemo date. On the night of the awards banquet everyone got together and sent me this photo!

Thank you everyone!!!! I love you too and sorry I missed all the fun!! I'll be back soon.

And Now For Something Completely Different...

2008-07-11T16:20:00.011-05:00

Feeling a little whiney today.... chemo side effects are starting to build on me (fatigue, tummy troubles, etc.) but rather than turn the blog into a whine fest, I'm going to post something that makes me happy! Here are some photos of my adorable son, Eli, sailing on Lake Maumelle:

What form!

May I point out that he is in the lead here:

And finally - a snapshot of me without hair - for those who asked!

But don't forget the old me, either!

p.s. - Thanks to all of you who keep sending cards and emails and gifts. They make me happy!

726

3 Down - 3 To Go

2008-07-01T21:05:00.005-05:00

Chemo 3 is done. This round was a little harder than the previous ones. A little more nausea, a little more indigestion, a little more fatigue. But it is done and it brings me to the halfway mark.

The next three sessions will be a different drug which means we are back to the unknown and which further means that my anxiety sky rockets. I hate the unknown. The new drug has weird side effects that scare me - shortnesss of breath, skin reactions, mouth sores, darkening of the skin and nails. Did I mention that I hate the unknown? I have to try and forget all about it for the next three weeks. I need a new mantra - any suggestions?

I am happy that the long holiday weekend is near. The Fourth of July is one of my favorite holidays. I like cooking out on the grill and having summer fresh veggies. I love drinking beer in the humidity and shooting off fireworks in the dark. Large firework displays are nice, but I'd much rather shoot my own. I love going into that sweltering hot tent and filling up a basket with roman candles, butterflies, and sparklers. It's good to throw in a fountain or two and you must have a dozen or so large mortars. Throw in a few punks to use as lighters and you've got yourself a couple hours of do-it-yourself entertainment. God Bless America!

Hope everyone has a safe and happy Independence Day!

600

I'll Be The One In the Funny Hat

2008-06-24T21:59:00.006-05:00

It is very interesting how people react to seeing a person - a woman in particular - without hair. Most people are very kind.

Friends are quick to smile and tell me I am beautiful. They laugh and giggle and want to touch my hat or scarf as if touching my long gone hair. It isn't a nervous laugh, but more of a genuine, it's-good-to-see-you're-okay kind of laugh. And I thought I would feel awkward and shy upon seeing each friend for the first time without hair. Instead it is usually a happy moment.

Strangers are even better. They exclaim with grand exaggeration how much they love a certain hat or the color of my scarf! Even though they don't know me, they want to somehow reach out and offer me encouragement during this challenging time. They don't feel free to address my illness directly, so they offer their praises to whatever adorns my head at the moment. It's pretty darned cute. I love this kindness from strangers.

There are a small number of people that can not acknowledge it at all and they really don't want you to acknowledge it either. They're afraid to say anything to you and become very nervous if you say anything about it. They are more uncomfortable in their own normal skin than I am in my wacky bald head! I guess it takes all kinds....

So just remember, if you haven 't seen me yet - I'll be the one in the funny hat.

On another note, chemo #3 is Friday. This round will mark the half way point! My oncologist says the middle sessions of your regimen tend to be the hardest. She said she used to believe there was a medical reason for it and would run multiple tests and exams on people. Now she believes it has more to do with the patient's attitude - feeling tired of the treatments and yet knowing you still have more to go. I'm hoping the halfway mark makes me feel accomplished vs. dreadful of the remainder. I still feel lucky that this has been so tolerable.

464

Knowledge Is Power

2008-06-15T22:32:00.004-05:00

I just want to say thank you to everyone for your phone calls and notes the last couple of days. Thank you for feeling my sorrow with me and for sending your words of encouragement. It all helps to lift my spirits. When I started this blog, I had no idea how much I would be wearing my heart on my sleeve for all to see.

The shock of the news has worn off and I am feeling steadier on my feet now. I am feeling less devastated and more fortunate to have the knowledge that I have. I have lots of time to explore options and make decisions. I had a goal in the back of my mind to close this blog on December 31st of this year; I would close the door on 2008 and on breast cancer at the same time. Something tells me I may have to extend that deadline... I will keep you all informed as I gather information and make decisions. Just know that this will be a long and slow process.

Well - I have survived my first full week without hair! I'm still fussing around with scarves and hats and haven't found the best combo yet. I have branched out from the orange scarf a bit, but it is still my favorite. I also found an old brown hat that belonged to my dad in the days when men wore hats. I think it's going to be one of my favorites as well. I wonder if I'll ever be brave enough to go completely bald in public??? Surprisingly enough, my hair is actually growing! How is that possible? It started falling out exactly two weeks after the first chemo. I'll bet the second round happens exactly two weeks after round two - which will be this Thursday. However, I think the stubble will be a little easier to lose than my long hair!

So... life goes on. Thanks again to everyone for their support.

315

A Curve In The Road

2008-06-12T16:34:00.004-05:00

Life threw me a bit of a curve ball yesterday. Part of me isn’t ready to share this news yet and another part of me can’t hold it in.

Many of you may remember that I submitted blood work months ago for the breast cancer gene test. Wednesday I learned that I am positive for the BRCA2 breast cancer gene.

Damn.

The numbers behind the BRCA2 gene mutation are powerful. If you possess the gene, there is a 56% -87% chance that you will develop breast cancer before age 70 and a 27% - 44% chance of ovarian cancer. If you have ALREADY HAD breast cancer, there is a 64% chance that you will develop it again. And we are talking about a new, primary tumor in a different location or different breast – not a recurrence of the first tumor.

These are BIG numbers. I am looking at a 64% chance of another breast cancer tumor! Shit!

Needless to say, I am now faced with the decision of removing both breasts and my ovaries. Of course I will explore all options and talk to many experts, but my initial reaction is to say “take it all.” I do not want to play those odds. It’s a butt load of surgery and it sounds horrible, but I do not want to mess around with cancer any more. Fortunately, the decision isn’t urgent. There certainly won’t be any surgery until after my chemo is complete at the end of August.

I am trying to look at the upside of this. At least I know about the risk and I have the option to take various actions. I can prevent the cancer from occurring. I am empowered. I also have the opportunity to help a lot of women (and men) in my extended family. The analysis of my DNA was comprehensive and required 17,000 individual tests. But now they know specifically where to look for the gene and anyone in my family can have a simple, inexpensive test to determine if they carry the gene as well. Looking at my family history, the gene most likely comes from my dad. He will be tested first. If his test is positive, we will notify all the other family members.

This news was hard. I was so happy with the lumpectomy. Bi-lateral mastectomy? Ugh! I am emotionally devastated and my head is in a thick fog. There were plenty of tears yesterday and neither Ben nor I went back to work after the 10 a.m. appointment with the geneticist. I wasn’t able to maintain my composure or concentrate on anything. We drove out to the lake and watched our son who is participating in the Junior Learn-to-Sail program this week.

Today I am exhausted and very unfocused. I didn’t sleep much. I thought I was over the hump and now there is another whole game. I know - I know things could be much worse. I know I will be okay. Like everything else, it will just take time.

If you are interested in learning more about the BRCA2 gene and what it means, go here:
http://www.myriadtests.com/result-br1-positive.htm

Chemo 2 is Done

2008-06-09T12:59:00.002-05:00

Well, I made it past chemo number two without much problem. My reaction was pretty much the same as the first time. I fought the nausea for several hours after the infusion and then felt tired, irritable, and hung over the next two days. I hate the nausea part but the rest of it I can tolerate. The weird part about the nausea is that even after it’s gone, if I think about it, I start to feel queasy all over again. It takes a few days to get it out of my mind.

The hair… is gone. It became such a mess I had no choice but to shave it all off. My sister-in-law, Diana, brought clippers to the house and shaved it for me. I have to tell ya – it is weird being bald. The loss made the weekend a little harder to handle. It’s a lot easier to talk the talk than to walk the walk – if you know what I mean.

For the first 24 hours, my head felt like it had mentholated cream all over it; it was tingly and cool. And my scalp feels very tender and vulnerable. There is still some stubble left so right now it feels rough like a cat's tongue! I’ve never been very good with accessories so this whole scarf and hat thing has me rattled. So far, I am clinging to one orange-ish scarf in particular. Every outfit will have to match this scarf because it’s the only one that feels comfortable!

This will take some getting used to….

Stress

2008-06-04T17:16:00.004-05:00

Feeling a little stressed today. Chemo number 2 is Thursday. I went to the doctor this morning for my blood draw. They have to make sure your blood counts have rebounded from the previous treatment before you can proceed with the next. Once again, my paperwork got "lost" and I waited 2 hours for my appointment! Argh.... I had to ask the desk 3 times before they finally figured out the breakdown in communication. The doctor was very apologetic and said she would explore why the wait had occurred.

The doctor gave me a good report and said I was "ahead of the curve" so far. She said subsequent treatments usually follow the same course as the first treatment, so I should expect the same side effects and response time. I like knowing what to expect.

I'm not as worried about the chemo, but I feel like I am leaving way too much work undone. I know the world will go on without me and everything will be okay in the end, but I'm having trouble turning off my guilt meter.

One of my tasks for the weekend is to shave my head. The fall out is becoming too messy and bothersome. God, that's gonna be weird. What was that damn mantra?

My sister will be here again and it will be nice to have her back. She is such a trouper to come here from Nashville - which is not a short drive. I'm sure we will have a fashion and accessories session to deal with my bald head! She is much better at those kinds of things than I am.

Wish me luck! I'll let ya know how it goes.

Losing Your Hair Is Not A Tragedy... But It Is A Little Painful

2008-06-02T00:38:00.005-05:00

Well, it's past midnight and I am having trouble sleeping tonight. I have a lot of things on my mind - plus - my scalp hurts. Yes, I have begun losing my hair. It is falling out by the handful. My scalp is itchy and tender all over - it's similar to the feeling you get when you wear your hair in a tight pony tail for too long.

Earlier today I got my sister in-law, who is a hair dresser, to cut it short for me. I figured a short hair cut would help to ease the transition to complete baldness. I started to tear up a little as I prepared to go, but I repeated the mantra a few times (see previous post) and pulled myself together.

I've had long hair since I was in Jr. High so the short hair feels really weird. I even scratched my neck with the comb because I'm not used to stopping that short! The hair is wild, unruly and extra curly. I have no idea what to do with it! In the end, it doesn't matter much. It is coming out so fast that I will be ready to shave it completely in a day or two.

When I got home from the hair cut, Ben and Eli had prepared a scavenger hunt for me. Written clues led me to various hiding places in the house where I found new scarves and hats to cover my bald head. It was extra sweet of them to try and cheer me up. I played along, but I must admit that it was kinda hard to be playful at that moment.

The emotional investment most of us have in our hair is strong. It is such a part of our identities. (Who of you can think of me and not see my hair falling across my left eye?) Hair represents health, hygiene, and how well you care for yourself. It is sexy, flirtatious, and something that makes us unique from one another. You don't have to remind me that the loss is temporary or tell me that bald is beautiful. I'll be just fine. I know that losing your hair isn't a tragedy.... but it's at least worth a big whine:)

This Week's Mantra

2008-05-30T16:29:00.000-05:00

Losing your hair is not a tragedy. Losing your hair is not a tragedy. Losing your hair is not a tragedy….

More details to come.

Living Large

2008-05-30T15:42:00.007-05:00

I feel great.

I feel NORMAL and that feels great. It’s amazing how a little taste of illness can make a normal, average day suddenly seem spectacular.

Memorial Day weekend was a load of fun. The sailing club hosted a regatta over the weekend and we had a number of out of town boats that attended. All of the sailors are good, old friends who have been coming to our Memorial Day regatta for years. Once again, I am reminded of how many bright, fun-loving and caring people I am lucky enough to call friends.

I did not race on any of the boats this weekend. I wasn’t sure how I would be feeling so I didn’t commit to crewing for anyone. But as Commodore of the club (or “Commodorable” as some call me) I was present on the shore for most of the event. We started off with a “Welcome Aboard” party Friday night. It gave me the chance to say hello to all of the out-of-towners and to show everyone how well I had survived chemo number one. I was almost tempted to have a beer but I was feeling so good I decided not to risk it!

The racing started on Saturday morning but I didn’t drive out to the lake until noon or so. Just as I got there all of the boats were coming into the docks for a break in the action. As I was walking down to the docks to say hello, a friend hurried past me and said, “I love all of the pink ribbons!” I thought to myself, “What in the heck is she talking about?”

As I got closer to the docks, I realized that every boat had a PINK RIBBON trailing off the back of its boom! Thirty plus sailboats were flying pink in honor of ME!! Turns out Ben, my husband, was responsible for the whole thing. He bought rolls of ribbon and passed it out to everyone. Was that sweet or what?? It was one of the greatest feelings I’ve ever had! I felt very loved and supported by my friends. Ben definitely gets to put some brownie points in the bank for this one.

After the racing wrapped up on Sunday, we invited a large group of sailors to our house for dinner. We ate, swapped stories, and laughed. Late in the evening, our talented friend, Rob, picked up an unused Martin guitar that lives at our house and began to play. He was fabulous - especially when he played his own original songs. I finally broke down and had a few drinks which led to a little bit of dancing on the kitchen floor:) We played around until 3:00 in the morning - yikes! It was such a treat to have good friends and live music in our home; I had so much fun! The music and the company were really good food for the soul.

I feel great.

The Scar

2008-05-22T14:39:00.003-05:00

I went to see my surgeon yesterday for one last check of the lumpectomy incision. It has healed well and the seroma is gone - no more fluid underneath. My doctor was in a jovial mood and ran his fingers through my hair. Said he wanted to touch it one last time before it all goes away. I think he is pleased with his work and the resulting scar. He knew my anxiety about the scar's prominence on my chest. With a big smile on his face, he asked me if I had worn any of my low cut blouses yet. I said that yes I had indeed and that the scar stayed nicely hidden! I think it's fair to say that my surgeon likes breasts - and that's a good thing!

I haven't said much here about the scar. I am also pleased with the result. I am still able to wear some "sexy" tops without the scar showing (it's the little things in life). And what the heck - I don't think I will mind showing it now and then. It is much better than I ever imagined. I can't believe I ever contemplated a mastectomy! I am so happy to have my breast! I definitely made the right choice for me.

Hope everyone has a happy Memorial Day weekend! Summer time is here! Wahoo!

Better

2008-05-20T11:24:00.002-05:00

I continue to improve. Each day is better than the last. The chemo leaves you with a tiredness like you've never felt before. All I can say is thank goodness for sunshine! I can't imagine having to do this in the dead of winter. I'm sure the heat will eventually wear me out, but right now the light is good for my attitude!

Moving forward...

Cranky

2008-05-18T18:00:00.003-05:00

Today's forecast: Bone tired, cranky, easily irritated.

I put the top down on the car, donned my "cancer sucks" ball cap and drove out to the lake. I do love the wind in my face. Sat by the shore and watched the sail boats come and go. That was about all the energy I could summon on this gorgeous day. I managed a little conversation with those who wandered close by before driving back home.

Next on the agenda - food, shower, hit the sheets and call it a day.

The 1st Chemo Day

2008-05-16T20:58:00.004-05:00

A few more details about the first day of chemo...

Tuesday night before the first treatment, I went to Hot Springs for a meeting and went out for a few drinks with friends. It was such a wonderful time. It was so good to get away and relax for one night and put all the cancer stuff out of my head. The conversation was wonderful and the support and encouragement I got prepared me to face the challenge ahead. It was a lovely evening and a shot in the arm. I have to say, it was kinda funny when we got kicked out of the hotel parking lot at midnight by the hotel staff :)

Wednesday evening my sister drove down from Nashville, TN and brought me the cutest gift! When I was first diagnosed with breast cancer, I kept saying that I needed everyone to "circle the wagons and shoot!" It was my way of saying that I needed my friends and family to gather around me and help me get through all of this cancer stuff. My sister Janet wrote to me saying, "I've got your back covered and I am a good shot," and signed it Annie Oakley. So, for my gift she brought 3 toy covered wagons and some little cowboys and prairie-people. She set up a little diorama of circled wagons and picked toy characters to represent everyone in our family. She even had a woman character with guns that looked just like an Annie Oakley figure! On the outside of the circle there were two bulls to represent the cancer that everyone wants to kills. Wasn't that great? I got such a laugh! I am going to keep them circled until we get the "all clear sign."

We got up on Thursday and had a leisurely morning. At around 10:00 we went to a place at St. Vincent's Hospital called New Outlook. It is a wig and supply store for women going through chemotherapy. It feels a little silly, but I tried on a few wigs. I tried long hair and short hair. I even tried on a platinum blond look! In the end I walked away with a shorter brown wig that should be more suitable for the summer months. And here's the kicker - it was free! They provide every woman with one free wig. Of course, we left a donation anyway (well - my sister did) but what a nice service! Not sure how much I'll wear it... but you can't beat the price! We also managed to pick up a few scarves and hats through out the day at different places.

A quick bite of lunch and then on to the infusion center at UAMS for chemo number one. My appointment was for 12:00 noon and I didn't get in to the infusion room until almost 3:00. Ugh! We waited around for almost 3 hours!!! At first, something happened to my orders from the doctor's office. They hadn't been sent down like they were supposed to be. Secondly, the pharmacy was short staffed and backed up. I was so anxious by the time we started that my blood pressure was really high. I'm really glad my sister was there for this first visit.

The infusion itself was pretty quick. First, they gave me 7 anti nausea pills to take!! Then three different drugs were administered via IV within an hour. I left feeling okay and decided it was fine for me to go to Eli's 6:00 baseball game. About an hour into it - here came the nausea. I stuck it out for the end of the game and made it home. I took some pills and ate a baked potato which seemed to help. I think I waited a little too late to eat dinner. I was pretty miserable until about 10:30 until I was finally able to go to sleep.

Slept til 9:00 the next morning when Janet woke me up to drink some fluids. One of the drugs is supposed to be bad for your bladder and the more liquids you drink, the better. The nausea was gone but I felt like I had a bad hangover. I slept a lot today and feel decent this evening - especially after the wonderful dinner my sister cooked.

I'm hoping I've gone through the worst of it by now. The nausea was bad, but the hangover part was tolerable. Some people say the worst hits in 48 hours.... so we shall see!

1 Down, 5 To Go

2008-05-16T09:31:00.002-05:00

Just a brief post to say I am doing okay. The chemo day was a long one. Got really nauseous between 7:00 and 10:00 p.m. but managed not to throw up! I put myself in a drug induced coma and slept it off. So far today, I feel like I have a bad hang over. Lord knows I've suffered through many of those before, so surely I can make it through this!

More details on the chemo day later - just wanted everyone to know that I am coping okay.

The Scary Date Is Set

2008-05-12T15:31:00.003-05:00

Okay - I've committed to Thursday, May 15th to start chemotherapy. My appointment is at 12:00 noon. Weird time, huh? Setting the date somehow makes me feel less nervous about it all.

My sister, Janet, will be coming down from Nashville, TN to go with me. It will be great to have her company. Plus, we will try to squeeze in some time for wig and scarf shopping :)

Here we go......... !!!!

Radiation and Chemo

2008-05-10T20:47:00.004-05:00

I had an appointment with the radiation doctor this past week. Radiation is something you must do to prevent a local recurrence if you have a lumpectomy, like I did. I was really puzzled why my surgeon wanted me to see the radiation specialist because that usually comes AFTER chemotherapy. Turns out, they want to enroll me in a clinical trial of partial breast radiation versus whole breast radiation. They are doing research to see if radiating the lumpectomy site alone is as effective as radiating the whole breast.

Conventional whole breast radiation requires you to be treated once a day, five days a week, for 5-7 weeks. The partial breast radiation is different. You receive radiation treatment twice a day for 5 days and then you are done. They also do it BEFORE chemo. Now I finally understand why I was sent to see the radiation doctor so soon!

The short time frame of the partial breast radiation is appealing... but they only have five years of data to show that it is a viable option. While I would like to help out in the name of research - I just don't think this trial is for me. If I lived far away from a treatment center that made daily treatments problematic, then maybe I'd be willing to give it a go. But the treatment center is less than 2 miles from my office and maybe 10 miles from my house. Going there every day for 5 weeks won't be a problem. I think I'll stick with the conventional treatment and choose whole breast radiation. That will come after chemo.

Speaking of chemo... I may start sooner rather than later. Because of holidays and other commitments, I may start on Thursday, May 15. That's next Thursday! I had said I wanted one more week of healing, but the calendar is pushing me. I am *sleeping* on the idea this weekend and will decide by Monday morning if that's what I want to do.

Another reason to start is that the waiting is making me anxious. Sometimes my imagination is my worst enemy! Left to ponder, I can make things much worse in my mind than they are in reality! Every time I really think about the chemo I start to feel nauseated and develop a mild headache. I think I just need to get started before I work myself into a frenzy!!

I'll post my decision on Monday.

Chemo Looms

2008-05-08T17:38:00.001-05:00

Well, I haven’t posted in awhile so let me catch everyone up to date.

The healing is going well and I came back to work on Monday. The work I left behind is still there and waiting to be finished. Blah.

The burns have faded (thank goodness) and have been replaced with itchiness! The soreness is slowly getting better and my range of motion is great. I am pretty darn pleased with the scar. It’s long, it’s prominent on my chest – but as far as scars go, it is a fine one. My badge of courage.

I went back to the surgeon on Wednesday. There is still fluid under my incision which is pretty normal – technically it’s called a seroma. He had to drain it again, but less fluid came out than last time; a good sign that it is shrinking.

Later that same day, I had a visit with the medical oncologist, Dr. Hutchins. I think I’ve mentioned before that Dr. Hutchins is chair of the oncology department and oversees the oncology fellowship program. Once again, I feel like I have one of the best doctors available; I like her a lot. She is a polar opposite of my surgeon. Whereas he is brisk and authoritative, she is mild and takes her time.

Many of the decisions in cancer treatment are based on numbers – and they’ve been keeping numbers on breast cancer for many, many years. The bottom line is this – taking chemo improves my survival rate from 84% to 92% - an 8% gain. So heck yeah – I have to do it. She is recommending 6 cycles of chemo – once every three weeks. We will do three rounds of one “cocktail” and three rounds of another. The first three rounds are known as FEC (short hand for the three different drugs involved) and the last three rounds will be a drug called Taxotere. They both come with the fully expected range of side effects – and yes – I will lose my hair. Knew that was coming – right?

If you have a burning desire to know the details about either drug, you can check out the following links:
FEC - http://www.cancerbackup.org.uk/Treatments/Chemotherapy/Combinationregimen/FEC
Taxotere - http://www.cancerbackup.org.uk/Treatments/Chemotherapy/Individualdrugs/Docetaxel

Dr. Hutchins says we can start anytime I’m ready. Gulp. I am not ready. I am scared.

I went home after the appointment and threw myself into total denial. I didn’t look at a calendar; I didn’t google the drugs to learn more about them. No, I turned on the tv and watched horrible reality shows for three hours without moving. I watched “Wife Swap,” “The Super Nanny,” and “The Barbara Walters Special” on her new, tell-all memoir. Serious denial. I just couldn’t bear to think about any of it.

Dr. Hutchins gave me some other information during the appointment that was hard to hear. I asked her how we monitor for a recurrence after all the treatments are done. We can’t realistically scan my body every six months, right? The answer is, other than ongoing mammograms, you simply wait for symptoms to appear. You wait because early detection of metastases isn’t important. Metastases aren’t usually curable – no matter how soon you start treating them. Ouch.

Bring on the chemo.

First, I’d like at least one more week of healing under my belt. Next, I have to look at the calendar. Since everybody responds differently to chemo, it’s hard to decide what day to start. Some people have reactions the night after they are infused. Others don’t feel bad until 48 hours later. How will I react? And do I want to try and spend weekends recovering? Or should I give up time at work so I can be with my family on the weekends? There are too many unknowns and I have already told you about my trouble with decision making.

I am a slow thinker. It’s gonna take me a few days to figure this all out. But I guess it’s safe to say that chemo will begin in a couple of weeks – most likely sometime the week of May 19. The sooner I get started… the sooner we can quit.

I read that Mohammed Ali once said, “I hated every minute of training, but suffer now and live the rest of your life as a champion.” Seems like a fitting motto for chemo. Think I’ll adopt it.

Burn Pics

2008-05-02T14:49:00.005-05:00

(**UPDATE** These photos don't look the same on all computer monitors. On some monitors, you can barely tell the burns are there. Trust me - the burns were very red in real life!)

Just thought I'd give you a peek at my burns so you can have lots of sympathy for me. The incisions look pretty good... the burn is another thing all together!

My arm pit:

Ouchy!

Adhesive Burns

2008-05-01T18:09:00.002-05:00

Well... I still didn't make it to work today. I was very uncomfortable all night long and couldn't sleep - even with pain meds. This morning, I realized that my breast and underarm are burned. Some small areas are even blistered and oozing. I am obviously allergic to the adhesive that is used to attach the steri-strips to my skin. They spread the "glue" all over your skin before they attach the strips. All the areas touched by the glue have turned red.

I am uncomfortable moving around without a sports bra on for support and my skin couldn't handle the tightness of the bra touching it. So I stayed in bed wearing a light pajama top. I also cut off some of the unnecessary ends of the steri-strips. It's feeling better this afternoon.

Just have to see what the night brings before I know how I'll feel tomorrow.

Notes on Healing

2008-04-30T23:30:00.002-05:00

So, the healing has been going well. The pain hasn’t been too bad; mostly I’ve just been tired. I’ve slept many hours every day. The pain medicine contributes to the sleepiness, but mostly I think your body burns all of its energy in healing the wound. Plus, I think all of the stress leading up to the surgery wore me out. Knowing the good outcome allowed me to finally relax a little.

I’ve once again confirmed that daytime television is truly a load of crap. Actually, I was secretly looking forward to watching Oprah and The View everyday (something I would never admit to any of you in person!) but I never made it past 5 minutes of either show without falling asleep. My goodness, I forget that there is another whole world out there on the airwaves! Soap operas I can understand to some degree, but do people really watch Jerry Springer and Montel Williams? And why are there so many different courtroom shows? I saw one talk show that highlighted men who get pleasure by paying morbidly obese woman to sit upon them and squish them. I am not making this up.

I decided I should probably go back to work.

I went back on Tuesday – one week post surgery. I guess we will call it a transitional day. I went in at 10:00, took a two hour lunch, and left a 4:30. Mostly, I stared at my “To Do” list and thumbed through all the phone messages. I promised myself I’d do better on Wednesday.

But then Wednesday arrived. I had my post surgery follow up with the surgeon in the morning. I was so proud of my progress and I felt I was a model patient. When the doctor examined me he said there was a fluid build up inside the incision – how he could tell this I still don’t know. I couldn’t feel or see anything unusual. First he ripped off all the steri-strips (ouch). I am sensitive to adhesive so there is a good deal of skin irritation underneath. Then he proceeded to clean off the area with an alcohol swab that stung like crazy! He placed a needle in the incision and drained off 40 ccs of fluid. The nurse placed pressure on my breast to help all the fluid drain. Sounds painful, but it really wasn’t. He adds new steri-strips and orders me back in one week.

As I start to get dressed I realize that my boob is not happy about being handled so roughly. And my skin feels like it’s on fire. By time I got to my car, I was beginning to wonder if I’d be able to drive. Within a few minutes, I realize that I am in a great deal of pain that isn’t going to subside quickly. I was in the same amount of pain as the day after surgery! Suddenly, I felt back to square one. I needed drugs!

I made it to the office for just a few minutes to take care of one important piece of business. Then I drove home (with one arm) and tried to calm the fire inside. Things were better within a few hours, but I am still feeling very tender. Thank god I gave up the idea of going to Seattle this week. It would have been a mistake!

I guess the whole thing kinda caught me by surprise. I thought I was doing so well…. I thought we were just going to look at the incision – not poke around on it! I think maybe I underestimated the magnitude of my injuries.

I am feeling better now and I think I will be fine to try work again on Thursday. I just have to realize that I am still fairly vulnerable.

Surgery Is Over

2008-04-24T17:23:00.004-05:00

Whew! I’m so glad to have the surgery part over. It is such a relief to hear that the sentinel node was negative. I feel like a great weight has been lifted off my shoulders. The initial pathology that happens while you are on the table is considered about 90% accurate and they conduct a more thorough pathology exam on the node and the removed tissue once surgery is complete. There’s a chance that the full pathology exam could identify some cancerous cells – but the chances are slim.

The sentinel node procedure is way cool – and way painful! I had to have four injections into my areola! Four needle sticks without any numbing agent or any pain killers! And it burns and stings like a mother tucker – YEOW! You know it’s bad when the doctor looks you in the eye and says, “This is going to hurt. I’m sorry. Feel free to scream, cuss, or call me names.” The only thing I can say is that the doctor was VERY quick and the burning went away within a few seconds. And of course the temporary pain was worth it considering the procedure may prevent you from having a large incision under your arm and the unnecessary removal of clean lymph nodes (as it did for me).

About 10 – 15 minutes before they take you into the operating room, you get a nice “cocktail” to help you relax. At that point, you don’t care what they do to you! (Some of you have seen the picture my husband dared to take of me in this goofy state! I will not be posting it here!) All my memories are a little fuzzy after that. I remember rolling into the operating room and having the oxygen mask put to my face. Then lights out!

Waking up is just as fuzzy. I remember asking about the node… several times... and being happy that it was negative. I started to have some nausea and they quickly gave me some phenergin which promptly knocked me out again for about 2 hours. When I awoke – the nausea was completely gone and they said I could go home instead of staying at the hospital. More good news!

The incision on my breast is not the same orientation we had discussed and I don’t like it. But I am happy to say there doesn’t appear to be any noticeable change in the shape or size of my breast. I don’t even have any swelling. The pain is tolerable and I think I will be okay in 4 or 5 days. My breast and underarm are covered with steri-strips so it will be a few weeks before I can actually “meet” the scar that will be a part of my life now.

Stop the presses! Just got a call from the doctor. The path report came back clean! The two nodes they took were clean and the margins around the tumor were clean. Yee ha! Feeling lucky. Think I‘ll take the advice of my friend Jane and go buy a lottery ticket! This is the best news yet!

Gonna relax the rest of this week and the weekend. I’ll probably go back to work Monday or Tuesday. As I said before, the pain is pretty tolerable, I just feel like I want to sleep all the time. I think I only need the pain killers for night time now, which means I will have a lot left over. Hey - if you’re real nice to me I might share:)

NODES ARE NEGATIVE!!

2008-04-22T19:18:00.004-05:00

The nodes were negative! This is great, great news.

Surgery went well. I got to come home vs. staying at the hospital. I'm resting comfortably.

More later...

Last Minute Details

2008-04-21T16:54:00.002-05:00

I check in at 6:00 a.m. for surgery. Ugh - I am NOT a morning person. I go to Radiology at 7:15 a.m. for the marking of the sentinel node and surgery should be around 9:00 a.m. I'm guessing an hour for surgery, 30-45 minutes in recovery, and in a room by 12:30 -1:00. Sleep the rest of the afternoon. Spend one night in the hospital and go home on Wednesday.

I am a little anxious this afternoon. All of the anxiety I put aside during the delay is catching up with me. I am not nervous about the surgery itself - just anxious about the final outcome. You know... the dreaded scar. What was that mantra again? Oh yeah.... Remember the bigger picture; I will learn to embrace the scar. Remember the bigger picture; I will learn to embrace the scar. Remember the bigger picture...

Oh, I am so ready to get this over with! I wish I could go home and go to sleep right now. Alas, there is a baseball game and a little boy who would be very disappointed if his mother did not attend.

I will post my surgical experiences (what I remember of them!) when I get out of the hospital. I'll talk to you all on the other side of this thing!

The Guesthouse

2008-04-21T11:33:00.002-05:00

A little wisdom from the great Persian poet Rumi.

The Guesthouse

This being human is a guesthouse
Every morning a new arrival
A joy, a depression, a meanness
Some momentary awareness
Comes as an unexpected visitor

Welcome and entertain them all!
Even if they're a crowd of sorrows
Who violently sweep your house
Empty of its furniture
Still treat each guest honorably
He may be cleaning you out
For some new delight!

The dark thought, the shame, the malice
Meet them at the door laughing
And invite them in
Be grateful for whoever comes
Because each has been sent
As a guide from the beyond

Translated by Coleman Barks

Hurry Up And Wait

2008-04-18T18:12:00.003-05:00

When the doctor's office let me know my surgery had to be re-scheduled, I almost told them they had to send a bottle of valium to me as a penalty fee! And the valium wasn't for me only - some of my friends and family were more stressed about the re-scheduling than I was! It was frustrating, but I made the decision not to get upset about it. The scheduler told me that the doctor had some personal business he had to take care of. I figure the doctor is a human too and needs his time now and then. The date will come soon enough.

Now that the initial shock of the word CANCER has worn off and I have better information, I am trying to scale down the drama of everything. (Me? A drama queen?) It's very easy to get caught up in the fear and emotion of cancer and get carried away. It can consume you. I have to stop and remind myself that this isn't a terrible tragedy - at least not yet. Yes - I will have a scar on one of the loveliest parts of my body. Yes - the chemo will make me lose my hair and feel bad. Yes - I will have to live with some uncertainty (don't we all every day?). But I will get better, and I will go on with my life for the time being. And what if I have a recurrence? I'd hate to think that I'd spent my limited time moping or in some heightened state of anxiety or crisis. I have to learn to deal with this diagnosis with some amount of peacefulness.

I'm not promising that there won't be bad days or that I won't whine. I'm not promising to swear off all drama... I'm just saying that I am trying to decrease the drama and raise the peace. Having a treatment plan helps a great deal. I know where I'm going now and what I have to do.

Speaking of a treatment plan... I had an opportunity to speak with Steven, a good friend of mine who is a surgeon living in Miami. Steven concurred with my decision to have a lumpectomy vs. mastectomy and laid out all of his reasons why. As he was speaking, he echoed all of my thoughts almost exactly. It was so comforting to have someone with great knowledge and experience, who knows me well, to reach the same conclusion as I did. I was having some anxiety about my decision, but after talking to Steven, I know I've made the best choice for me without a doubt. Why didn't I talk to him sooner?

Btw - I was finally able to get out of jury duty. It took me awhile to get someone on the phone, but once I did, they were very nice. I had to ask my doctor to fax a letter stating that I needed to be excused for medical reasons. I feel kinda weird because I don't have a piece of paper or anything that verifies I've been excused - I only have the word of the bailiff over the phone. What's the penalty for skipping out on jury duty?

New Date!

2008-04-15T15:48:00.004-05:00

Got the call from the doctor's office right after I posted the last message! The surgery will now be on TUESDAY, APRIL 22nd.

Rats!

2008-04-15T15:11:00.004-05:00

My surgery for Thursday has been CANCELLED because of a scheduling conflict with the doctor. Looks like it will be re-scheduled for next Monday or Tuesday. I will post here when I find out the new date.

Well, this certainly messes up my plans! I'm trying not to be too frustrated by it. I don't know why, but I somehow feel that there is a good reason for the postponement...

More later.

Gatekeepers

2008-04-10T15:12:00.002-05:00

Obviously, one of my biggest concerns is spread of the cancer to other parts of my body. The presence of cancer in the lymph nodes is a sign that it is spreading. I have been trying to visualize the cancer cells staying contained in the primary mass in my breast. All the cancer cells need to stay right where they are so that the surgeon can remove them all during the lumpectomy. No scattering of the cancer cells is allowed! Travel restrictions are being strictly enforced.

As I was visualizing this thought, a funny idea popped into my head. I started seeing the "card soldiers" from the Disney movie Alice in Wonderland. I visualized the soldiers surrounding the tumor in my breast and pointing their spears at it. Their wide, card bodies form a tight gate around the herd of cancer cells. Any cells that try to escape are promptly poked back into the herd.

I can' remember if they were effective soldiers in the movie, but they are doing great work for me!

The Plan Takes Shape

2008-04-09T15:23:00.005-05:00

I visited with my surgeon this morning and after gathering all the facts, I have chosen the option of a lumpectomy. The surgery will be Thursday, April 17th. I was at the hospital from 8:30 this morning until 2:30 this afternoon taking care of all the pre-op details (blood work, chest x-ray, ekg, consent forms, etc.)

The day of surgery will begin with the sentinel node procedure. They will inject a radioactive dye into the mass and then determine which lymph node it drains into first. That node will then be removed and examined. If it shows cancer, they will make a bigger incision and take all the nodes. If it is cancer free they will move on to the lumpectomy. The nodes are one of the best prognosticators of success. I hope they are cancer free.

The lumpectomy means they will remove the tumor and some of the surrounding tissue. It will leave me with a pretty big scar that I am still unhappy about :( - but it seems like the lesser of all the other "evils" to me. I will grow to embrace the scar... but it will take some time. I actually made the surgeon draw the incision lines on my breast with an ink pen so that I can begin to picture what it will be like. He was reluctant... but he did it! Sigh. It is larger than I had hoped... When did I become so vain? I will learn to embrace the scar. I will learn to embrace the scar...

I will stay one night in the hospital. Recovery should be fairly short. The Dr. says I will be able to drive within 3-4 days! I forgot to ask him what he thinks about me going to Seattle two weeks post surgery! Do you think that's crazy?

Looks like chemo will begin about 3-4 weeks post surgery. Then radiation after that. My goal is to have all treatment complete by Christmas. I think that is a reasonable goal.

It feels good to finally have the decision made and the date set. Onward!!

More Gratitude

2008-04-06T19:10:00.003-05:00

As I read other people’s cancer stories on the web, I have come across a reoccurring theme. A lot of people discuss frustration with their doctor or with the medical system in general. It makes me realize how truly fortunate I am. There have been a few things that have bothered me about the process, but for the most part things have been pretty smooth. The fact that my husband is on faculty at the hospital may have something to do with it (okay – maybe a lot!) but I also think it is a good facility. Waiting room time has been minimal, my results have come quickly, my phone calls have been returned, and my questions have all been answered. I have found all of the staff friendly and helpful. And thank goodness I live in a city where such a facility exists. What if I lived in a small town with the nearest hospital 100 miles away! I can’t imagine the difficulties that would come with such a commute.

Another thing I have in my favor is health insurance! Thank god for health insurance. And because my husband is on the hospital faculty, we probably have better insurance than most. It is easy to see how a diagnosis like mine could be a devastating financial blow for many families. At the beginning of every major procedure, they’ve handed me a piece of paper that says, “It’s possible that your insurance may not cover the cost of this procedure. Please sign here saying you will be responsible for the bill if insurance doesn’t pay. The cost of this test is $3,500.” $3,500 dollars!!! That’s a lot of money – and we are just getting started! So on top of everything else, I’m glad we don’t have to worry about being financially destroyed.

I will say the one thing that upset me was the form that asks you to assure payment of the tests. Not so much because it affects me - but because of all the other people it must affect. This kind of form should not be given to you as you are walking in the door for the procedure. I mean, what are you gonna do? There’s no time to call your insurance company to see if you are covered. (I had been told I was pre-certified but they still gave me the form!) And there’s no time to call your doctor to ask him if this test is absolutely necessary. I feel like people are signing the form under duress. I understand the hospital has to take precautions against the insurance companies, but the test was scheduled for over a week. Couldn’t they have sent me the form days before the procedure? I’m already nervous about the procedure when I arrive at the hospital. The last thing I need to be worrying about at that moment is a huge bill that I can’t afford! I wrote a letter and put it in the suggestion box at the clinic. I hope somebody reads it and takes it to heart.

You know, I didn’t ask for cancer. I don’t want cancer. But since I have it, I consider myself real lucky to have the necessary resources available to fight it. Things could be worse. ALOT worse.

God, Gratitude, Journeys, and Prayers

2008-04-05T02:07:00.007-05:00

I am not exactly what you would call a very spiritual person. At the risk of offending any readers, I think it’s important for me to state that I do not identify myself as a Christian or as a part of any other established religion. As I look around at the world and see all of the amazing things that exist, I feel there must be something greater than me – something or someone that created all this wonder. But beyond that, I have very little definition or parameters that explain what “god” is or how she operates. I guess it’s best to say that I believe in the idea of one god, but many paths. There is more than one way to feel the presence of god and to honor her.

The one thing I know that truly connects me to god is the feeling of gratitude. Thank you, god, for trees and flowers. For lakes and wind and sun and snow. Thank you for animals, for laughter, for family… for humans. Thank you for the experience of knowing love. I don’t fully understand what god is, why she created this universe, or even why I am here. But I know I am grateful and appreciative to experience all of these things. For me, this gratitude is the basis of everything I believe. We honor god by nurturing, respecting, and taking care of the things we appreciate.

Many, many years ago, I gleamed an important lesson from the iconic movie The Wizard of Oz. Dorothy and all of her companions travel to Oz to see the great wizard. They believe he will be the answer to all their prayers – that he will give them everything they need to feel complete. But when they get to the wizard he doesn’t really give them anything at all. He simply shows them how they each already possess the attributes they are seeking. They didn’t need to receive anything from the wizard – they needed the journey to Oz to discover their own strengths. The lion learns he is brave during a challenge, the scarecrow learns he is smart during a crisis. The final destination wasn’t the point – it was the journey that mattered. I think Glenda says, “You had the power inside you all along. All you had to do was wish it so.” I don’t think the goal of life is to end up in heaven. I think the goal is to learn and to experience as much as you can on earth. It’s not about the destination, it's all about the journey and what you learn about yourself along the way.

Anyway… I started this philosophical post because I wanted to acknowledge all of the many people who are praying for me. Many of my friends have told me they are praying for me and they have asked their church or family to pray for me as well. While prayer is not one of the paths I personally use to reach god, I am respectful that others have chosen that route and appreciative that they include me. It honors me. Thank you.

Well, hmmmm…. I wonder what lessons I’ll be learning on this next part of the journey.

Good News

2008-04-04T15:57:00.003-05:00

Biopsy 2 is benign - no cancer. Yea! I now have all the surgery options open to me. All I have to do is choose! What a great way to enter the weekend.

I visit the surgeon on Wednesday. I feel certain we will make a decision and schedule a date for the surgery at that time. It will be great to finally get a plan of action in place.

Progress.

Jury Duty

2008-04-03T17:45:00.002-05:00

LOL! Found out today that I've been summoned for Juy Duty! What a hoot! The letter says there are NO Exceptions for service. There isn't even a number for me to call. So I guess I will have to miss ONE MORE day of work to go through the drill. Normally, I might be kind of excited to serve - right now is bad timing. Hope I'm not 2 days post-surgery or something like that! If anybody has any hints about what to do - please share!

Hate is a Strong Word, but I Really, Really, Really Don't Like the Tube

2008-04-02T22:30:00.003-05:00

Biopsy 2 is over. Not toooo bad, but a little freaky. I was lying on my stomach and my boob was compressed in a vise grip so you can’t really move much. My chin and forehead were resting on a foam cushion inches off the table. Some how the sheet got bunched up in front of my face and I couldn't see any light while I was lying in the MRI tube. As I am pretty claustrophobic, this produced a moment of extreme anxiety for me. I felt like I was gonna bust out of there and run far, far away. Every fiber of my being was telling me to get up. It took a lot of effort to keep myself in control for those 10-15 minutes.

After they pulled me out, I had to stay in that position for another 30 minutes or so while the doctor then did the actual biopsy. I had to ask the tech to hold my hand and talk to me for a few minutes so I could calm down and stop trembling. I finally figured out that if we moved the sheet I could see light and that helped me tremendously. All in all, it was 4 trips into that tube that I don't like.

I hate that I am so claustrophobic; I have tried hard to overcome it. I have more control over it as I get older, but sometimes it simply overwhelms me. One of the most important things I learned today it that it’s important to ask for help when you need it. The tech was more than happy to hold my hand and talk and it went a long way towards calming me down (that and the valium was probably starting to kick in!)

I am pretty sore, but so far no hematoma. Looks like I will avoid that nuisance this go around. Thank goodness.

Hope I’m not making every procedure sound like a nightmare… they really aren’t that bad. Just annoying. We expect results on Monday. Friday if we are lucky.

Gonna take another valium and go to bed. One more notch on my procedure tally.

Talking to Eli

2008-04-01T16:57:00.006-05:00

For some reason, I blurted out the information about chemotherapy to Eli last night. His reaction was not one of fear - though his eyes got pretty big when I told him I would lose all of my hair. He simply said, "Mom - there is no reason to be embarrassed about losing your hair. If anybody makes fun of you, you tell them, 'Look, people, I'm taking medicine for cancer and it made my hair fall out. So just deal with it!' Really, Mom. You don't have to be embarrassed."

When I told him I was more worried about throwing up than losing my hair, his reply was simple. "We will feed you saltine crackers and sprite."

I think I'm going to be in good hands:)

Self Indulgence

2008-03-31T23:38:00.002-05:00

I've always thought blogs were so self-indulgent. I mean, who needs to read the garbage floating around in my head every day? I admit that I read a few blogs here and there. I've found some of a political nature that interest me. I've read blogs of people's insane sex lives, I've seen travel logs and people who are passionate about some crazy hobby. They all get boring after awhile.

But they are a phenomena of our time. I wonder if in the future people will take as great an interest in old blogs as we do in old letters today. They are each a time capsule in their own right.

This blog really is a self-indulgent endeavor for me. It will probably contain lots of whining and excruciatingly painful discussions that will illustrate my poor capacity for quick decision making. When I'm happy or content, I don't feel as much of a need to write. When I am scared, troubled, or mad I feel the need to purge.

I do believe this cancer will be a journey that will change who I am. But I doubt I will unveil any enlightening philosophies or nuggets of wisdom that aren't already covered in the thousands of cancer books floating around in the universe. So many have gone before me.

I'm sure I may be disgusting at times (eeewww - your vomit was what color??) or boring at others (how many bald jokes can you stand?) So please read only what interests you and ignore the rest. I am trying to label posts that contain information from a doctor's visit or procedure, so if you are mostly interested in those details, you can click on those labels.

Otherwise.... indulge me.

Re-Entry

2008-03-30T11:32:00.007-05:00

We are back from the slopes and I guess tomorrow means re-entry into the real world again. The friends, sunshine and cool mountain air really were helpful for my anxiety. The mountains are so beautiful, the sky is unbelievably blue, and we had one fun day of hard snow. I had stretches of several hours at a time without thinking about cancer. I somehow thought that this vacation would give me time to contemplate treatment decisions in a relaxed manner and gather opinions from my friends, but in truth is was more of a distraction than anything. I am not much closer to any kind of decision about surgery. It's funny, as much as I was distracted during my vacation, I find it humorous how easily my mind wanders back to cancer. Some one might say “pass the salt, please” and I swear I heard “do you have metastases?” The brain is a strange thing….

I will have the second biopsy on Wednesday to gather more info (I need to double check that date!) My poor little boob is just now losing bruises from the previous procedure and the hematoma is still present. This biopsy will be MRI guided – which means another trip into that tiny tube I hate. (Deep breaths…) It sounds like quite a sophisticated procedure. They place you on your stomach with your breast hanging through a hole. They place some kind of grid around your breast and slide you into the MRI machine and take images. Then they slide you out of the MRI machine but you stay on the table with your breast nestled in the grid. They use the images from the MRI and the grid to show them where to insert the needle. All of this means you have to lie very still with your boob in a vise grip for about an hour. Not painful – just uncomfortable. Maybe I will get another valium :) And please – no hematoma this time!

If the biopsy is cancerous, then there won’t be a choice – I will have a mastectomy. If the biopsy is benign, I am back to making a choice between lumpectomy and mastectomy. I am still torn. It amazes me how quickly people jump to the conclusion of “cut them off - you don’t need them!” It just isn’t that simple and the medical evidence doesn’t support that. I still have a lot of decision making to do. Ugh. I am terrible at making decisions.

I have come to accept the idea of the chemo. From what I read, it just isn’t the horror that it used to be so many years ago. It isn’t fun, of course, but it sounds manageable. Losing the hair doesn’t freak me out too much… but still I’m not looking forward to it. The nausea scares me the most. I am a puker.

We have given Eli some basic facts about the cancer, but haven’t told him much. He is very protective of me and I wanted his spring break to be free of worry. We have talked about the surgical options openly in front of him, but I haven’t told him about the chemo yet. I think the chemo will scare him a bit so I am holding off until the next biopsy is complete. I am trying to unveil things to him one at a time so that he isn’t overwhelmed. When I told him I have cancer, he asked me if I was going to die. Gulp. I told him no. I said there are good kinds of cancer and bad kinds of cancer and that I have a good kind – it’s just going to take a lot of treatment to make it go away. All of the books I have read suggest that you be completely honest with kids, but I couldn’t find the words to tell him that there is maybe a 15% chance I won’t beat this disease. I just don’t think he needs to hear that at this time.

(By the way, I have to mention that Eli is a truly gifted skier and it is such a joy to see him fly down the mountain. He has skied a total of 4 weeks only in his entire life and he can handle just about anything the mountain has to offer – with the exception of a few extreme, double black diamond runs. Steepness, moguls, jumps, iciness… he handles it all. Skiing is truly his sport.)

So, distractions are over; back to reality tomorrow. It will be hard. Work looms, school goes on, the laundry still needs washing… and treatment decisions have to be made.

Thanks to everyone that encouraged me to go skiing and that sent good wishes while we were there. And thank you to all my friends that helped with the distraction during the trip: Mimi, Herman, Jane, Sean, Ruth, Mike, and Frank. It was a much needed vacation.

And of course, thank you to Ben and Eli for going with me and for waiting at the bottom of every hill for me to catch up:)

Relaxing

2008-03-25T19:33:00.002-05:00

Having a great time on the slopes.

Thanks to everyone for their good wishes!

99 Words for Boobs

2008-03-22T16:51:00.011-05:00

A little song for you.

NOT suitable for office viewing:)

http://www.joecartoon.com/videos/841-99_words_for_boob

(Sorry - you must endure a little commercial first.)

Finding the Path Again

2008-03-21T07:06:00.003-05:00

I spent yesterday trying to decide what to do about the genetic testing. I called both my surgeon and my oncologist to ask for their opinions. I am very pleased to report that they both called me back within a few hours. They even conferred with each other!

They both agree that waiting on the gene test is too long to wait. My surgeon suggested we stick with the original plan for now. He feels like the second area in my breast identified by the MRI is nothing. He suggested I do the biopsy and get some real answers before I make up my mind about a mastectomy. In a very nice way, he told me to calm down. He feels I am at a very low risk of having the breast cancer gene but that getting the test is a good idea. We just don't need to wait on those results. He was very thorough in his questioning and responding to me.

As I said before, I was very pleased with my ability to reach both doctors with my questions. It is good to know that they will be available for me through out this process.

I have to say that I do feel more inclined to want a mastectomy now, but I will have the biopsy (ugh) and get some answers before I fully decide. I went ahead and had blood drawn for the breast cancer gene test, so that process has begun. I absolutely will not proceed with a double mastectomy without knowing the results of the gene test. The numbers simply do not support bilateral mastectomy otherwise. There is a .5% - 1% chance cancer will develop in the other breast if you do not have the gene mutation. Cutting off a breast for a 1% chance seems stupid to me. I am happy with a 99% chance for success.

If the gene test should come back positive... I guess I'd be looking at another surgery (or more - because I'd probably have my ovaries removed, too). For my sake, and for the sake of all the other women in my family, lets hope the gene test is negative.

We are leaving this afternoon to go skiing. I am going to try setting some of this angst aside and have some fun. I was so exhausted yesterday that I went to sleep at about 7:00 p.m. Woke up at 8 or so, had a sandwich, said hello to Ben and Eli and went back to bed at 9:00. I slept through the night! All of that to say that I haven't finished packing yet so I better get to it! I'll have a computer with me in Colorado but don't know if I'll get a chance to post this next week.

Many Doctor Visits

2008-03-20T08:24:00.003-05:00

Yesterday was a long, hard day. It was so complicated I’m not sure I can recapture it all. I started at the hospital at 9:45 in the morning and I didn’t leave until 5:45 p.m. It started with the MRI, and ended with a geneticist. In between, I saw the surgical oncologist and medical oncologist (the one that coordinates chemo).

The good news – the body scan doesn’t show any other spots. So there are no positive metastases that we can see. Some of the other news was not so good. The path report shows that my cancer is classified as “triple negative.” This means it is not estrogen receptive, progesterone receptive and it is HER-2 negative. This tumor responds to chemo only and is not affected by the other medications that are given to prevent reoccurrence. So I will definitely have to have 4 months worth of chemo. This type of tumor occurs in about 10% of women, it is more aggressive, and has a greater tendency to reoccur. My prognosis is still really good; there are simply fewer tools in the tool box to fight this “brand.”

The other bad news is that the MRI indicated another suspicious spot in the same breast. Due to a scheduling error, my surgeon did not have this information when I saw him. I left his office at noon thinking I was having a lumpectomy. The call came about 20 minutes after I left. They want to do another biopsy on the affected area. I haven’t spoken to my surgeon yet – but I am now thinking, let’s skip that second biopsy and go for a mastectomy. I don’t want to be worrying about additional spots developing into cancer! The story goes on….

At 2:00 I went to see the medical oncologist, Dr. Laura Hutchins. She is the one that will oversee my chemo. She is the chair of the oncology dept. at UAMS and I liked her very much. We discussed some different options regarding chemo, including one study suggesting that women with triple negative tumors respond better when having chemo before surgery. We didn’t make any decisions, but she gave me several options to consider.

As we began to discuss my family history some more, she suggested I have the test that determines whether or not I have one of the two identified cancer genes. Knowing you have the gene means you have a 40% chance of developing cancer in the other breast! That’s huge! If I have the gene, I would probably want to have a bilateral mastectomy (meaning both breasts) to significantly lower my risk. Suddenly – I’ve gone from a simple lumpectomy on one breast to talking about a double mastectomy with reconstruction! The gene is also associated with a large increase in risk of ovarian cancer – and I still have my ovaries. This is a lot of information to process.

She sent us upstairs to talk with a genetics counselor. Loooong story short – the geneticist says I am at medium to high risk for having the gene but that he would like to see me have the test – not only for my own benefit, but for all the other women in my extended family. Because my sister and I were both young at diagnosis (her at 40, me at 45) there’s a possibility we have the gene. Here’s the kicker – the test is $3,100, it’s very iffy whether insurance will pay… and it takes 4-6 weeks to get results!

So here are the questions I face:

Can I wait 4-6 weeks for results? Is that risky with my agressive type of cancer? If I have the gene, I would much rather have one surgery to remove both breasts than to have one surgery now and one later. I'd like to wait on results.

Do I try to wait for a pre-certification from insurance for the test, or pay for it out of pocket and pray they will reimburse us? We are sure to have many expenses from my illness over this next year. We need to spend wisely. Is this test necessary now?

Do I forget the test for the moment and just move forward with a plan on the existing problem breast?

Do I bother with a biopsy on the second suspicious area or do I say forget the biopsy, forget the lumpectomy – take the whole breast?

And then there are all the reconstruction options that I haven’t even begun to consider. I need to see a plastic surgeon… or two.

We leave on vacation tomorrow. If I am going to have the gene test, I need to decide today and take advantage of this week when nothing else is happening. I will be trying to talk to both my surgeon and my oncologist today to get their opinions. I will also be exploring options to expedite the test. Two different friends, an oncologist and a pathologist that live in other states, both thought results came quicker in their state. They are going to check it out and let me know today.

Just when I thought I had a handle on things, it all got much more complicated. I am devestated at the idea of a bilateral mastectomy. My mind has not wrapped around that process yet. And the triple negative thing certainly adds worry. All in all, the prognosis is still great and I suppose it is good to have lots of options. This just wasn't the news I was hoping for.

The Best Advice I've Seen So Far

2008-03-18T18:33:00.001-05:00

In the face of uncertainty, worry, and fear, here's some good news: once you gain more and more information about your diagnosis, the easier it gets. The waiting really is the hardest part. Knowing what lies ahead will give you some control over your path.

Be strong, be weak, be a crazy person -- it's all necessary as you fight and recover and heal.

You may not know it now, but you will become the toughest person you know.

In time, you will encounter far more good than bad from this experience. Just be on the lookout, and you'll see.

Reading is good (Dr. Susan Love's Breast Book is the bible on breast cancer) but it can be scary too, especially on the Internet. Be careful.

Be an advocate for your own health. If something doesn't feel right, it probably isn't -- so pursue it until it does feel right.

Anxiety and Indecision

2008-03-18T17:07:00.004-05:00

Wednesday is the MRI and then a visit with the doctor. I am anxious to get the results of the PET Scan so that we can begin ruling out the thought of any metastases. I am also anxious to get my hands on the path report from the biopsy and to begin making a plan of attack.

I've been reading a lot of books and talking to a lot of survivors. I am uncertain at this point which procedure would be best for me: lumpectomy or mastectomy with reconstruction. Both have their pros and cons.

The lumpectomy is a smaller surgery and leaves me with my natural breast. It also leaves me with a nice scar and maybe a dent that will probably be visible much of the time due to it's location on my chest. It also means a course of radiation which can cause scar tissue to develop in the breast and leave you asymmetrical. Not to mention the fatigue factor and the burning of your skin.

The mastectomy is a bigger surgery but eliminates radiation and the visible scar. The reconstructed breast (which may require additional surgery) won't have much feeling in it, but it will have a nice shape. The whole idea of constructing a nipple is a little weird, but it can be done with fairly decent cosmetic results. There is also a procedure known as a nipple sparing mastectomy that leaves the nipple in place, but it is more controversial.

I guess I don't really have enough information to make a decision yet. I'm hoping tomorrow will give me a few answers. I also think I will have a consultation with a plastic surgeon to see if he can offer any alternatives. I wish the lump was in a less prominent position. I would just go with the lumpectomy and be done with it.

Shout Out

2008-03-16T20:58:00.002-05:00

I have to say a BIG THANK YOU to all of my colleagues that were in Baltimore this past week. Your phone calls and cards made me feel great. I think one of the reasons I was in such a funk last Monday is because I was mad that I was missing all the fun in Baltimore! (Can't believe I missed cognac and poetry recitation at Edgar Allen Poe's grave site!)

All of the people associated with the Alliance of Children's Trust Funds are such smart, nurturing, and witty people. I enjoy every one's company immensely. So thanks for making me part of the action through the phone calls and notes. I will be working on a poem for the next time we are together. I don't know any Poe so I'm thinking of reciting the Jabberwocky or maybe the Cremation of Sam McGee...

Sedatives are Good

2008-03-14T14:15:00.004-05:00

Oh good grief! The PET CT was a piece of cake. They insisted that I take a valium - not for anxiety but because it relaxes the muscles in the chest wall... and something to do with "brown fat"? - whatever that is. Anyway, I took it and I'm glad.

After they injected me with the radioactive "dye" (I know it's not really dye) I had to wait TWO hours before they could do the scan. I got to sit in a private room in a big recliner and it was fine. The valium kicked in quickly so reading was out of the question. I put on my ipod and blasted the Phantom of the Opera and then later some Joni Mitchell. I decided that Joni Mitchell and valium go together nicely!

I snoozed off and on for the whole two hours which I realize makes me a pretty cheap date. I only had 5 mgs of valium and I felt pretty loopy. It kind of surprised me that no one even checked on me once in those two hours. Not that I needed anything... but still.

I was happy to see that the scanner is nothing like the MRI machine. The tube is not long enough to hold your entire body, so some portion of you is always sticking out. No claustrophobic feelings at all. I guess the valium really did help cause I fell asleep in the machine after about 10 minutes!!! It was very peaceful and quiet in there and they covered me up with a heated blanket. I slept like a baby through the whole thing. Time passes pretty quickly when you're snoozing!

So... one scan down and one more to go next week. I think I'll ask them for a valium :)