Good Bye 2008!

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

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

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

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

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!

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

Too cute... had to share.

Wisdom

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?

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.

748

The Happiness Grenade

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

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!

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

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!

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

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

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

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!

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?

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

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

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

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!

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

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

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

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

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

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

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...

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.