12/20/12

New normal

The holidays feel different this year. Maybe that's cause they are different. I can't put my finger on why. Yeah, I know...I am different. But its more than that.

I'm in my usual holiday mode five days before Christmas. Buzzing around getting last minute gifts and making more cookies than even the cookie monster can eat. 

One of my very favorite holiday traditions is our cookie delivery night, the 23rd of each December. I spend days making a variety of homemade cookies. We (meaning I) make "goodie" plates for our friends and neighbors and then we (meaning my son and I) deliver them. We don't visit except long enough to pass off the goods and say Merry Christmas. We are kind of like Santa in that regard.There are too many friends to visit to linger long. Have to make hay. Move along to the next house. 

Somehow I'm not feeling the same...something...that I usually feel this time of year. I don't know what to call it. Oomph. Excitement. Something. Instead I just feel tired. And teary. 

Maybe that's cause I am tired. Cancer has left me tired. But if tired is the worst of my complaints, then I guess I'm lucky. 

And the tears? They are tears of gratitude and relief that I'm still here making a good Christmas for my son. 

12/2/12

Too much pleasure for one day

Is there really such a thing as too much pleasure for one day? I think not.

But if so, I am overly guilty. So lock me up and throw away the key.

Here I sit. Or lounge, rather. In the late autumn desert sun, at a beautiful relaxing resort/spa with native American music playing softly. The air smells wonderful. I can see the desert mountains from my perch by the pool. Adults-only pool, meaning no laughing children or rambunctious families, which suits me just fine in this contemplative moment.

I slowly made my way into the very tranquil pool marveling at the very fact that I am here. Who would have thought that after 5 surgeries, 4 months of killer chemo, and 9 months of feeling like my world had stopped turning....that I would be sitting here in such a lovely place? Not me.

I am so very far from doctors, tubes, needles, pain and the relentless fear that has stubbornly dogged me this past year. Physically and emotionally far far away.

Or am I? Am I here on this perfect day BECAUSE I have been down that awful road? Would I enjoy and appreciate this day as abundantly had I not been in cancer treatment this year? Probably not.

Which is sad, in a way, that we don't fully appreciate the momentous gifts in our lives until we have lived with the fear that we may never have another pleasurable moment again. That every moment here on out would be filled with the anxiety and worry that comes with living with a potentially terminal illness.

As I heard someone say recently...

Get up. Be grateful. Every single day.


Are you kidding me??

So I'm traveling by air this weekend for the time since February. For the first time since my cancer diagnosis.

I was just a little anxious about it but excited to be getting back in the game. Being that I just had surgery 10 days ago and have fresh stitches, and that I lifted the cutest little boy in the world last night so he could better see the Christmas lights (ouch.....that really hurt....but was so much fun), I was just a little concerned about how I would handle getting through a long travel day and all that entails (ie airport security, cattle call boarding, stowing luggage).

Well, I'm happy to report that TSA was wonderful about helping me through security. Those folks deserve some positive press.

Delta...not so much. I asked for help getting my laptop case in the overhead bin. Know what they told me? That if I wasn't well enough to stow my own bag, I'd have to either check it or I would not be allowed to board. Seriously?

Who in their right mind would check a laptop bag....with a laptop in it? We've all seen how bags are treated by the airlines. I once got a bag from baggage claim that had been duct-taped within an inch of its life because the zipper busted. A brand new bag...which was just fine when I checked it.

Delta explained that a flight attendant might "injure" themselves lifting my bag. Now I understand we live in a sue-happy society, but flight attendants are supposed to be able to manhandle airplane doors, beverage carts, and manage passengers in the event of a crash. And they are worried about injuring themselves lifting a woman's laptop bag??

And worse....this explanation came from a female Delta employee to whom I had just explained that I'd recently had a mastectomy. Another woman....with huge boobs. And a sucky attitude.

May she never develop breast cancer. And have to work (and travel) for a living.

As it happens, there is indeed such a thing as angels. On both flights, very kind gentlemen offered their assistance without even being asked. I can't describe my gratitude.
 

11/25/12

Creeping along...

Recovery is creeping along ever so slowly.  Spent several hours in the OR last Monday night cleaning up the mess my body made of my incisions. Naturally, it was the Monday before Thanksgiving, but it did not deter my determination to celebrate Thanksgiving one iota. 

Had to rearrange plans a bit, but that's ok. Cancer has taught me to be flexible and never to assume my body will respond as expected.

My oh so handsome Plastic Surgeon sliced open both incisions, removed the goo and made them all pretty, and sewed them back up again. It hasn't been painful, just a little uncomfortable. Dealing with the anesthesia was a bigger deal than the stitches. I've slept a lot this week. And I've watched more TV than I care to admit. But overall...not too bad. 

The anticipation was far worse than the reality.

Going back to work tomorrow. I am ready. It's been 6 weeks. Leaving Saturday for a 5 day business trip. I'm sure to be exhausted when I get home. 

Life is creeping along...

11/13/12

Two steps forward, one step back

I'm trying NOT to look at this as a set back. Really. But it's hard to keep my attitude on straight after all that has happened this terrible year.

Learned yesterday that we need to return to the OR to remove necrotic tissue from one of my incisions. That's another trip to the big hospital up the road, another anesthesia, another recovery. Not to mention another emotional hurdle to jump, which is getting harder and harder as we progress. Or don't progress - which is the crux of the problem.

I like things to move along. I'm a planner. I do better when I know what to expect. However, things aren't moving along according to my plan and it's starting to PISS ME OFF. 

This next surgery was scheduled for today. Got a call early this morning that the surgeon was sick and we'd have to reschedule. I guess even doctors get sick. What a let down. What a bummer. Not that I was looking forward to it, but I was emotionally geared up. I was ready for the next heap of crap cancer would dump on me. I'd washed all the laundry, mopped the floors, notified my work that I would not be returning to work this week. My ducks were in a row.

NOW WHAT?  Now they want to reschedule TWO weeks from now. That's totally not going to work for me. It's not in my plan. I'd already planned to return to work that week and travel to the west coast for a business meeting. I can't do either of those things if we schedule surgery for two weeks from now.

And won't that rotting tissue be really rotten two weeks from now? I liken it to watching a really ripe tomato rot away. Ewww.

The bigger problem is that it delays the reconstruction process. We can't begin to fill the expanders until the incisions are healed. And we can't swap the expanders for the implants until the are filled multiple times with saline making my breasts the size I want them. Another delay. I hate delays. 

I hate my expanders, too. They are hard as a brick. They are uncomfortable 24 hours a day. I can't lay down flat cause they press against my chest making me feel like I can't breathe. It hurts to sit too long. The muscle holding them in place spasms when I move a certain way. 

I keep telling myself that it's all going to be worth it when I get to come home with my new soft and nearly real-as-life boobs. 

Yes indeed. Someday this will all be worth it. I'll have fresh perky boobs and I'll be healthy. But for the moment, it feels like cancer will just never stop dumping on me. 

But on the other hand, I suppose it's better than the alternative. I could be dead. Ding dong dead. Instead, I'm bitchin' about how hard my boobs are and how I hate it when things don't go my way.

Maybe it's all not so bad...


11/11/12

Moving on

Is Thanksgiving really next week? 

I can't believe it, even though I've spent most of the year in bed, on the sofa, in the hospital, in a chemo chair, or just plain bitchin' and whining. Still, I have a lot to be thankful for, so bring it on!

Still on medical leave from work dealing with the mastectomy. Oh yea. Having a few little issues, but overall nothing too terrible, and I'm even hoping to return to work next week. Talk about moving on...going back to work will be a serious dose of reality.

But the real work of moving on from a cancer diagnosis is about to begin. I've read a lot about "survivorship", but I couldn't even fathom what that meant until last week when I got some perfectly awesome news from my perfectly awesome oncologist. 

She reviewed the pathology report from the mastectomy with me. She said - get ready for this - she said that it was the BEST NEWS POSSIBLE. She was blown away. An oncologist...blown away by a pathology report! You'd think she would have seen it all by now, but apparently I'm special. (We already knew that, right?)

Weigh the path report and lots of other hocus pocus medical stuff, put it in a pot and give a big stir, load into a calculator on the MD Anderson Cancer Center physician portal...and you are rewarded with a pretty little graph showing my opportunities for recurrence between 0 and 5%. That's lower than the general population.

Thank you, chemo hell. Thank you, mastectomy. Thank you, the hundreds of various pills I've taken this year. Thank you, God. You made it possible for me to get an unbelievably low recurrence score. Amazing.

Makes me feel pretty cocky. Cocky enough to want to rid my life of all the cancer crap in it. Including the hats and caps I bought to cover my bald head, the wig I bought and never wore, and all the pink shit decorating my house for the past several months from loving and well-meaning friends. I'm donating it all. Cause I don't need it any more. 

How's THAT for something to be thankful for?










10/27/12

Serendipitous love

Funny how these things work. 

I was having a very sad-bad-sad day yesterday. I decide I can't take my sad-badness any more and I head out to find breakfast. A good southern breakfast will make me feel better. At a Jewish deli in north Raleigh. Funny. But not really.

On the way, my most awesome cousin calls to say she is driving down from Virginia for the day to visit me. 

How did she know I needed her? My mom must have told her. My mom is in heaven. And my cousin has a direct line to heaven. So mom must have told her.

It was an exhausting day. I was so tired when she left to go home that I went to bed without dinner. We went to lunch, to visit a friend, shopping, visited on the sofa, did a few chores, walked the dog. Before she left, she insisted on filling my car with gas in case we have a devastating hurricane today and I need to quickly evacuate north Raleigh. With my dog.

Funny but typically southern. And loving.

A little love goes a long way.



10/26/12

What it was...

I haven't written or said much so far about my bilateral mastectomy except that it went well. Which it did. I needed some time to process the experience and decide if it was truly as horrifying as I anticipated or if my mind was just playing with me.

A little of both, as it turns out. 

My greatest fear was pain. That played out to my advantage, mostly. I can't really distinguish between pain and anxiety while I was in the hospital, but I do know that I really appreciated the drugs flowing my way and I recall at least one significant meltdown. A mixed bag.

I recall only bits and pieces from the hospital stay. Thankfully. 

I've discovered that the nurses and staff in a hospital can make or break the experience. Again, it was a mixed bag this time. The greatest exception was the navigator assigned to me while I was  in the hospital. I assume she is an RN, but she was the nicest person going and she stands out in my mind. Wish I could remember her name. The staff nurses...not so much. 

I'm suddenly wondering why in the world would a nurse look at me like I have two heads and treat me like I'm a pain in the ass when I start crying the afternoon after surgery? Is it uncommon in a hospital setting for a middle-aged woman to be upset about having cancer and losing her breasts? Apparently so. Or maybe I was just raining on her parade. Feeling some anger around that....

I'm told my first question out of surgery was "did they remove the port"?  I really wanted that port gone. Yes. It was removed. Yeah. Hated that thing...mostly because I had to look at it every day and be reminded that I am a cancer patient. I don't have to see it any more.

Instead, I get to see my "foobs" in all their lumpiness and ugliness. I got a good look at the incisions for the first time on Wednesday. Oh. My. Goodness. Very bad. Incisions are much bigger than I thought. And my drains are hanging from the biggest holes I've ever seen. They're huge. 

I came home with FOUR drains, two each from each side of my chest just under my arms. Sore they are, they are sore. And gross. I get to empty the drains twice a day and measure the gooey red bloodish output. Although I've never thought I had a weak stomach, this is a really nasty and gross activity. I got one of them caught in the sofa cushion the other day and nearly yanked it out of my body, stitches and all. The surgeon removed two of them on Wednesday, so now I only have two. Only. I can't bring myself to go out in public in them, so here I sit. I'm not the stay at home type and it's making me crazy and adding to my post-surgery depression.

Here's the really bad news:  the skin around the incisions isn't making the surgeon happy. Not healing well and we may have to deal with some necrosis, which will mean another surgery. The notion of having dying skin dripping from my foobs is truly a Halloween nightmare. Let's not even talk about what it looks like...

I have to sleep halfway sitting up and on my back. That means sleep is hard to come by. The compression bra sucks. It's far too tight and terribly uncomfortable. The expanders were filled with saline in surgery and they are stretching the muscle and skin to a wildly uncomfortable degree. I can't lift my arms high enough to get a glass out of the cabinet, though I'm told I should "push through it" and exercise my arms to avoid a frozen shoulder. Nice. It's beautiful outside, and I can't bring myself to step off the porch in fear someone will see my nasty drains that I can't really adequately hide. I'm sick of TV. Didn't love it to start with. My belly is swollen and sore from injections they did at the hospital.  

I'm depressed. There. I said it. I'm horribly sadly depressed and I woke up crying this morning. I'm pissed. And sad. And worried about the future. I'm broke. Being sick is expensive. I'm bored. I'm sore. I have long bloody tubes dangling from my underarms. 

I'm tired of people telling me how great I look. I don't look great. I look terrible. I'm pale, my hair is coming back completely gray, and I walk around like I'm 90 years old.

I'm sick of soup. Please. No more soup.

The bright side? I am clean. I got to shower for the first time in over a week. At least I don't smell.  Anymore.














10/22/12

One week out....

Maybe I'm just feeling optimistic, but I'd like to say that I'm feeling GREAT!  A little tired here and there, and definitely sore in all the expected places, but overall not bad at all. Sick and tired of the drains, tho. Not pretty at all. Ick.

Surgery went very well. Didn't love my hospital stay at Duke-Raleigh, thought everything took way longer than it should, including the delivery of PAIN meds! Bring 'em faster, would ya?  

And not one person in my room (one family member, three friends, two nurses) could identify the mystery meat on my tray delivered just 4 hours after surgery. Seriously?  A full meal 4 hours after surgery? Someone thought it may have been meatloaf. Someone else thought it might be fried steak. But whatever it was, not what the 'ole tummy needed. Give me broth, jello, and lots of water.

And guess what? I have cleavage!  The plastic surgeon filled my expanders with a healthy starting dose of saline in the OR. 

How many women can come out of a bi-lateral mastectomy claiming to have cleavage?

Me!


10/13/12

The weekend before...

I'd be lying if I said I wasn't anxious or worried. Every time I stop to really think about it, those blasted tears threaten to make my nose run. Hate that.

But aside from what's going on in my head, it's a perfect beautiful Carolina day. The sun is shining and the leaves are starting to turn beautiful colors. My son is on his way home to spend the week with me. My dog is napping next to my feet and soothing music is playing. There are chocolate cookies here on my desk and a glass of milk. I'm happy. Until I start thinking...

I try to remember that the hard part is behind me. I've heard from breast cancer survivors and doctors alike that chemo is way harder than the mastectomy. They darn well better be right....




10/11/12

Countdown to M Day

Very busy this week counting down to Mastectomy day. There's an amazing amount of preparation that has to happen. And plenty of doctor appointments.

Had my pre-op chat with the breast surgeon. Lasted about 3 minutes. I guess there really isn't much to say at this point, except let's get 'er done.

Did the pre-op visit at Duke. Thankfully, that was also much quicker than anticipated and completely painless. Unless you count my meltdown. 

It's so embarrassing when that happens, especially in front of strangers. I'm sure they think I should be in a different kind of hospital. I just can't help it. The tears start and I can't pull them back. I've cried for 3 days now.  

I'm not sure if I'm crying because I dread the surgery or because I will lose a part of my body. A significant part. Or maybe I'm crying because I'm just plain pissed off at all the crap I've had to deal with. At some point, you'd think life would just let me be.

Having a "Bye-Bye Boobies" party Sunday night. A potluck dinner with friends and neighbors. One of my friends thinks we should all burn our bras in the backyard. Excellent idea!

Y'all stop on by and bring your love! I promise I won't cry. 

10/7/12

HAIR

I have some. Enough that I am comfortable going out in public without a hat or scarf.  It makes me feel less like a cancer patient and more like a whole person.

I even have hair on my legs. Damnit.




10/6/12

The little things...

We all know its the little things in life that matter. Cancer drives that point home in a big way. We spend our days plowing through work and obligations. At least, I do. Head down, just get 'er done.

At one of my early visits, my oncologist said to me...
If cancer doesn't change your life in a thousand different ways, you're not paying attention.

Amen, Sister!

Cancer has changed my life. I'm sure everyone with a life threatening illness has an epiphany at some point. I haven't had a moment I can point toward. No aha moments for me. At least, not yet.  But it has made me think a lot about how I spend my time, who I spend it with, and oddly...where I live.

I love where I live. I have the best neighbors ever. I have a warm and comfortable home in a convenient location. But I don't love north Raleigh. I have wanted to live in the mountains as long as I can remember. The thought of living in the mountains rarely leaves me. 

So what's stopping me?  Me. Just me. Oh I've made a ton of excuses over the years for not moving. Mostly around my job. 

I work remotely for a company in another state. I could live anywhere and still do my work. But what if I lose my job? I need to be in a place where I can get another job. It's easier to find a good job in an urban area than on the side of a mountain somewhere.

And then there's the cancer. I'm glad I live in an area where quality healthcare was just down the street. It doesn't get much better than Duke or UNC for healthcare. So glad I'm not living in a tiny little town in the middle of nowhere. 

But I won't always be able to use cancer as an excuse. Let's hope. And I am slowly getting past my illusion that I won't be able to get a job in a more rural area. It'll just take a little more effort. Those of us who have worked from home tend to know where good telecommuting jobs can be had. 

So what's stopping me?  Me. Just me.



10/1/12

Cleaning for a Reason


Remember back in the summer when I mentioned I'd been selected for four free housecleaning sessions simply because I was undergoing chemo?  I don't mean to infer that chemo is simple. Far from it. But still...having my home cleaned for me for FREE, was a true blessing in so many different ways.

Cleaning for a Reason is an organization that coordinates provides FREE housecleaning for chemo patients. Once per month for 4 months while in treatment. It doesn't get any better than FREE, and this is particularly true when it comes to housecleanings.

Cleaning for a Reason has participating maid services in the patient's zip code area provide their service. This organization serves the entire USA and currently has 547 partners.

Aaron at Neuse Natural Cleaning has been working with me to provide my cleaning service. And what a service it is!  Aaron is a special young man who believes in giving back.

Be a blessing to someone and pass this information along. You may not know someone going through chemo, but someone on your email list might. And even if you (or someone you know) isn't doing the chemo dance, consider using Neuse Natural Cleaning as your cleaning service.

After all, who wouldn't want to do business with a company who shows compassion to sick bald women with chemo poison racing through their bodies? 

9/26/12

My new best friend

There was a good bit of excitement in the world of breast cancer (population: far too many) this week around a study part of the federal project Cancer Genome Atlas.  

The fact is that the topic of genetics makes my head swim. Science in general has always been a tough topic for me academically. But I never thought I'd be in a place in life where genetics would be so fascinating. Where it would both strike fear and enormous hope in my mind. 

In case you missed it on the news Monday, take a quick look at this study. It was on all the news shows Monday and Tuesday of this week. The study focused on my kind of cancer, Triple Negative, on basal cell cancers that start in the milk duct. Now, that's the kind of attention I love!

I still take exception to writers and researchers who publicly call Triple Negative "deadly". Wish they wouldn't do that just to get an emotional response from their readers. But I guess that's what most writers seek from their readers - an emotional response. Anyhow, the bigger point is that even though the risk is higher for me, there are plenty of Triple Negative survivors. Plenty. In fact, I'm going to be one of them. 

So while I wish the writer of this article would be a little more positive, I get the point:  A drug commonly used today to treat ovarian cancer is proving to be very effective against "deadly" Triple Negative cancer in studies and clinical trials. WooHoo!

Friends, give a big hello to PARP Inhibitors! There are many studies and clinical trials going on around breast cancer. I try to stay abreast (get it? A Breast...) of these studies. But this one is special. This one could be reality SOON. This one could potentially save MY life. Not just the lives of cancer victims in the far away future. It's the here and now.

Now that's the sort of science I love!

9/16/12

Living my life...and waiting

If you ask me these days I will tell you life is good. I feel good. I often feel GREAT, even. The fatigue still pokes at me once in a while, but that's just a good excuse to take a nap, right?

Living daily life without shades of chemo hanging over me is really really nice. Still have a few side effects, but considering what I've dealt with in the past few months, these are truly minor. Just an annoyance. Kind of like a gnat.

If it wasn't for the mastectomy racing toward me, I'd wonder what in the hell happened to me last spring? But the mastectomy, not to mention the scars I see daily, mightily remind me that I am a cancer patient. Like a brick over the head.

My mastectomy is one month from today. One month from today I will be a different woman, in a million different ways. Physically, emotionally. You'd think that post-mastectomy would be a joyous time for me. I'm DONE with cancer treatment and can truly move on. I survived. Right?

Whoa...not so fast, Cowboy. My oncologist wants to see me every 3 months for the next 5 years for blood work and CT scans. Then, every 6 months for 10 years. The doc and I are going to be very long-term friends. She reminded me last week that I won't be "done with cancer" for at least 3 years. Then, for 5 years. Then, for 10 years. In fact, I won't EVER be "done with cancer". It will be part of me forever.

My sub-type of cancer generally recurs within the first 3 years, if at all. Here's what goes through my head when I hear that:  You'll barely have time to recover from the trauma of the past 7 months or so before you'll have to gear up for the next life trauma. When I think of having to do chemo again, in the event of a recurrence, my heart sinks. 

So...yea. No matter how great I feel today or how much I am appreciating these beautiful North Carolina fall days....I'm not done. This is just a temporary reprieve. Seems a little cruel.

In the weeks leading up to my boob-ectomy, I'm keeping the roads hot. Going to the beach. Yeah!  Heading to the Outer Banks on Friday and planning to drive the entire length of the banks and visit every lighthouse and art gallery along the way. That's long been on my bucket list.  May visit a different part of the coast the following weekend...a blast from my past. And the next weekend, I'll be in my beloved mountains visiting my son and watching the WCU vs. Southern Georgia homecoming game following an afternoon of tailgaiting. How awesome does THAT sound??

Not letting any grass grow under my feet. Have to make hay before the surgery.Cause who knows what life will be like post-boob-ectomy? Will I be so depressed I won't be able to L-I-V-E? Will my Frankenboobs scare me every single day? Will I be in pain? Will I completely flip out and walk dangerously close to the edge? To the edge of what, I'm not sure.

I find myself touching my breasts a lot. As though I'm saying goodbye to a couple of loyal friends. I'll miss the chicks. They've seen me through thick and thin. I'm not sure their replacements will ever truly replace my gals. But they'll have to do. After all, I don't want to be a cancer patient FOREVER. Just for the next ten or so years...


9/3/12

Just shut up and get the test....

Part of the whirlwind and chaos around my breast cancer diagnosis included genetic testing. A simple blood test changed my life forever.

I tested positive for BRCA1 (BReast CAncer gene 1). Five to 10% of breast cancers are inherited. Like mine.  You are more likely to carry this gene mutation if you have a family history of cancer (any kind), are of eastern European descent, or if you are African-American under the age of 35. The only one of these that applies to me is the family history. 

Many women who carry the gene mutation RUN toward a double mastectomy and an oophorectomy as a prevention. Others just use it as an invitation for more frequent screening. In my opinion, testing positive means your breasts have a huge potential to kill you. And keeping your ovaries increases the risk of breast cancer since ovaries produce the very estrogen that fuels breast cancer. Seems a no-brainer to me.

Insurance companies don't like to pay for genetic testing. It is expensive. Mine paid for it only because I have a strong family history. I was lucky. My breast surgeon said at the time that genetic testing will be routine like mammograms and colonoscopys within the next ten years. Insurance companies will embrace genetic testing cause prevention is cheaper than a cure. That also means we'll likely live longer, which could be a down side for insurance companies.  

Getting my head around having breast cancer, understanding my genetic status, and dealing with the fall out has been quite the task. I'm still reeling from it seven months post-diagnosis. But the single one thing that has surprised me the most is the reluctance I get from family and friends about having their own genes tested for BRCA. Men and women. Men can get breast cancer, too, and they can pass the gene mutation on to their children. My son has a 50% chance of passing it on his daughter. He's getting tested, end of discussion.

Why wouldn't you want to get tested? Especially if you have a strong family history?? Am I not the greatest living proof point for discovering your genetic status?  

Someone said to me recently "I'm not sure I want to know...". Whhaaattt? You don't want to know you are in line for breast and/or ovarian cancer? Seriously? You want to wait until its cancer so you can go through chemo and radiation before getting your head out of your arse and taking action? I don't understand the attitude. Save yourself the agony of cancer treatment, get the test. Make informed decisions.

It's a simple blood test. And yes, it may change your life forever. But it will increase your chances of having a forever. Doesn't that make it worthwhile? 

It's better to know. Way better. For sure. Just ask me.


8/24/12

Live Strong

I am dismayed this morning to read the news of Lance Armstrong's loss of his Tour de France medals.  His personal statement was emphatic and compelling. For me, someone who has little interest in sports in general, the most important point he made was regarding his work with his cancer Foundation, Livestrong

Aside from the bitter battle between Armstrong and the USADA, his real life's work stands for itself. Sure, winning seven Tour de France medals is a real accomplishment. But the highest and most important accomplishment is Armstrong's support of me. And people like me. Who have cancer.

I have spent hours on Livestrong.org in the past months absorbing information and searching for hope. Even my doctor refers to Livestrong.org. She uses it as a resource herself, once referring to it when advising me on how much L-Glutimine to take. She went with what the web site recommended. It is a highly reputable organization and site.

For me, the question becomes why the USADA would pursue their vendetta against Armstrong knowing that - if they prevailed - they would have a heavy hand in destroying the reputation of a man who has helped millions in their battle against cancer. Isn't that far more important than who wins a silly bicycle race? 

I don't mean to underestimate what it takes to win the Tour de France. Seven times. I know it's not just a silly bicycle race. But comparatively, it's nothing. It's meaningless. It is indeed just a silly race when held up against the big C. 

Doesn't service to others around the world fighting for their very lives mean more than seven Tour de France medals?? If you don't think so, walk in my shoes for a day.  Spend a long sleepless night being me. You'll quickly change your mind.

So the USADA got their man. Great. Does that make the world a better place? Nah. What a waste. Imagine if Armstrong and the USADA had donated all the money they spent on this matter to cancer research. Millions of dollars wasted on an argument that no one was going to truly win.

Livestrong lives on.

8/23/12

Life after chemo

I don't know why in the world I thought life would start again immediately after chemo ended. Life after chemo doesn't start until the side effects end. So says I. Until then, chemo still rules my life.

It was three weeks yesterday since my last infusion. I felt good last week, but perhaps that was an emotional boost from knowing chemo was done. I started going to the wellness center to swim. Planned to do a yoga class there, too. I felt good. Optimistic. 

I felt compelled to LIVE my life. Was suddenly weary of being at home, of dealing with the ins and outs of sucky cancer. Had a strong urge to walk on a beach, sit by the pool and read, have the sun on my face. To eat shrimp. To live.

Maybe I expected too much, but the crash occurred this week. I'm tired this week. The neuropathy will not go away. My feet have swollen to the point they are shiny and I can't get my shoes on. My vision is blurry. I'm teary. Mostly, I'm just freakin' tired. 

No one told me about this. Oh, I knew the side effects would linger. Sometimes they linger for a long time. But I didn't expect to still be so impacted by the poison. I expected to feel a little better every day. I was thrilled I wasn't walking toward another smack down, better known as my next chemo infusion.

The problem here is that while I received excellent care from my oncologist, no one instructed me on what life would be like post-chemo.  I almost forgot that I've been through two surgeries, two lesser procedures (traumatic nonetheless), and seven rounds of heavy duty chemo. All in the last six months. All while working full time, parenting my college-age son, and managing my household and my cocker spaniel. I've had a lot of support in that time, but the primary responsibility was still all mine.

Who do I think I am? Superwoman? I wasn't Superwoman BEFORE cancer. I just muddled through life as best I could, sometimes not very well and other times stunningly successful. Like every other woman on the planet. 

What the heck makes me think I should be Superwoman NOW?

8/18/12

A day of firsts

I've had an awesome day. 

First, its a Saturday. That means I don't have to work and I can do anything I darn well please all day long. Love that.

For the first time in a very long time, I went swimming this morning. I GOT IN A POOL. And it was great!  It was so wonderful tears came to my eyes. I floated, and swam, and hung onto the edge of the pool watching the babies and their parents having a blast on the other side of the pool. Then, in the locker room, a really nice lady struck up a conversation with me. She'd had breast cancer too. We had a wonderful conversation.

Then, I had a nap, adding to my awesome day. Swimming wore me out, so it was a particularly good nap.

Next, I GOT A PEDICURE! My first in a long time. You can't have your nails done when on chemo due to the risk of infection. I've whined the whole time about how awful my feet looked without a pedicure. On my way to the pool this morning, I happened across a day spa that does medical pedicures. That means all the tools are surgically sterilized cutting down on the risk of infection. So I went for it. My toes are now a beautiful shade of sparkly purple. 

And just to make a good day even better, one of my bestest friends is coming over for dinner and a movie tonight. I'm sure there will be a bottle of wine (or two) consumed.

On this day at least, I'm enjoying not being sick. Or recovering from a surgery. Or scared to pieces because I have cancer. On THIS day, I'm enjoying life.

I intend to do a lot of that in the coming weeks leading up to the next surgery. Live and enjoy life. For me, that doesn't mean doing crazy things like skydiving. It means doing the simple little things that brought me so much pleasure BEFORE I got sick. Like swimming and pedicures. Normal things.

Who would have thought that NORMAL could be so awesome??

8/17/12

Hope vs. Fear

I've often wondered if it's hope or fear that has propelled me through my cancer treatments. Every time someone tells me I'm brave and courageous, I don't really understand why they think that. They must not know me very well. I don't feel brave. And I haven't felt courageous on any level throughout this ordeal. 

Unless you count the moments I have walked into a hospital for surgery. I hesitated at the door each time. My hands were shaking and I struggled not to cry. I didn't want to walk through the door. I dreaded and feared what was about to happen to me. The fear of dying from cancer is what made me walk through that door. Not courage.

The same thing happened when I first went to the cancer center after my initial diagnosis. For long minutes, I couldn't get out of the car to go in for my appointment. All I could do was stare at the sign on the building, hyper-focusing on the word CANCER thinking "how did I get here"?

What I have felt is a lot of fear. I am no stranger to fear. When my husband left years ago, fear set in and I don't believe it ever really left me. Fear of managing on my own. Of parenting on my own. Of making life altering decisions on my own.

In reality, I haven't done so badly. I sold a house, moved to a new city, bought a new house, educated my child, got a new job after a layoff in the midst of the worst recession ever, and learned to navigate the world by myself. Then, I got cancer.

You hear a lot about hope when you have cancer. All the overdone sayings like "Fight like a girl". Maybe I'm missing something, but I haven't really felt much of the fighting spirit the last 6 months. I've done what I needed to do. But not out of a sense of not letting cancer "win". 

It's all been out of a sense of FEAR. It's been out of a feeling that if I don't have the surgery, I will die an awful death from cancer. If I don't do the chemo, my cancer will spread to my brain or my spine or my liver, and I'll die a terrible death. It's not that I don't want to die. I just don't want a long painful protracted death. I want to die in my sleep. Don't we all, eh?

I've thought a lot about my son. I don't want him to have to take care of me. A senior in college, he is about to start his life for real. The last thing I want him doing at age 23 is taking care of a dying mother.

Going into the next phase of my treatment, the mastectomy and reconstruction, I am already feeling the dread. Dread of a difficult surgery and recovery. Really....it probably won't be that bad. But somehow I can't seem to replace the fear with hope and courage.

There must be some trick to that....

8/12/12

Done with Chemo

So I'm done with the chemo. WooHoo! My docs and I decided this week that I'd had enough. The risk in doing the 8th infusion wasn't worth it in terms of permanent side effects. The neuropathy is front and center right now as we work to minimize and reverse the nerve damage in my hands and feet. I'll be on meds for it for the next 12 months. Why tempt fate with more chemo?

I can't describe what an impact knowing I do not have to do another chemo infusion is having on me emotionally. It's remarkable, but I expect it to be short lived. I still have the mastectomy to deal with. 

I've slept better the last two nights knowing this phase of treatment was over than I have in weeks. I am more optimistic about my prognosis and my future.  We hit it hard with the chemo. Very hard. And even without the last planned infusion, I'm feeling very confident that we licked any remaining cancer cells. And once the boobs are gone, then my risk of recurrance plummets even more. 

I am confident I have done everything possible to prevent ever having to go through this again. Of course, I say that knowing the mastectomy and reconstruction will be a long road, but also knowing it is preventative. We're not lopping off the girls to get rid of existing cancer. It's to give the cancer one less place to hide. It's to give my genetic status the "f*ck you" boot. 

Genetically, I had a 75% chance of developing breast and/or ovarian cancer. Turns out, both were issues. At the same time!  The ovaries are history, along with all the other girl stuff associated with them. No opportunities for cancer to lurk there. And in a few months, we'll be able to say the same for the boobs. 

Maybe I'll live to be a ripe old age in spite of myself!

8/6/12

Been a while

It's been a while since I've written about my cancer and chemo experiences, about three weeks. Partially because my fingers have been numb from the neuropathy and typing is an odd sensation. Not painful, just weird. But mostly because I haven't known what to say that wasn't a repeat of what's already been said: chemo sucks.


I find that cancer and the related chemo side effects take over my head. On the days I feel good, my gratitude in having a good day is what sticks in my head, which is an upliftingly positive spin on my normal. I had a three week break between chemo infusions this time, and that extra week really made a difference. I could feel my body and my spirit healing. 


My last infusion was 6 days ago and I'm still reeling from it. Maybe cause its cumulative. I've kicked the last of the Aridimyciam side effects from the first 4 infusions, thankfully. But the last two infusions of Abraxane have gifted me with a whole other problem. Bone pain. Intense-almost-make-me-cry deep bone pain. It seriously intensified yesterday afternoon and has let up just a little since. 


My docs have thrown everything but the kitchen sink at it and they are very responsive when I call to whine. Onconologists don't like their patients to hurt. Distraction helps. Hot water running over my legs help.  Heating pad helps. Sleep is a blessing, especially when the steriods allow it. 


But I just can't help wondering why in the world all these medical types can't make it stop. It's easy to blame them for my pain. Of course, that isn't fair and it's not their fault. But this sort of discomfort plays heavily on my emotional state and I have high expectations that there must surely be something that can make it go away. 


My emotions are already all over the place, I'm told due to the steriods which tend to amplify everything. They are supposed to be helping the bone pain but I'm thinking they're a waste. I don't see any difference taking them, except they cause insomnia and emotional outbursts. Seriously? I'm taking a pill which does nothing but keep me awake and make me cry. Trash. Can.





7/19/12

Chemo: Round Six

You may be tired of hearing this and I'm certainly tired of saying it, but chemo S*U*C*K*S.  This last infusion beat me up with intense bone pain and neuropathy. And this was after they told me the new drug, Abraxane, would be easier for me with fewer side effects. 

Right. That's what they said about Taxol and look what happened there! Bone pain. Headache for days. Neuropathy. Ick.

What is it I blogged about back in the spring? Oh yea. They Lie. Indeed they do. About how much something will hurt, about the severity of side effects, about everything that matters in my world right now.

I said this before the last infusion, but I'm thinking really hard on it now...I may refuse the last two infusions. The Oncologist may take the matter out of my hands and decide not to do the last two infusions due to the neuropathy.  But aside from that...I may make that decision on my own.

I've had enough. My body has had enough. My spirit has had enough. I'm tired and worn out. Sick of being sick (I've said that before too....).

And now I have the mastectomy and reconstruction to look forward to in September. I need a break.

But on the other hand...even as I write this...I'm thinking: This is my one shot to kick this animal to the curb. There is no other therapy available for my type of cancer. This is it. Sigh.
On the upside, my appetite is coming back. Not much good tho since I can't really taste anything and my tongue is numb. But at least the sight of food doesn't make me gag any more. Small blessings.

I'm told chemo is sorta like the agony of childbirth. Once its over, you forget the pain and enjoy the wonder of your newborn child. So, once chemo is over I will forget the misery and enjoy being cancer free. Ummm....not so sure about that. Maybe. Need to think on that.

Ugh. I have two weeks to figure it out. Next infusion is Aug 1.


7/1/12

Chemo: Round Five

They told me these next four Taxol infusions would be like night and day difference from my last four Adramycian/Cytoxal infusions. I got excited. Really excited. Thought I'd have more energy, wouldn't feel sick for so long, thought I could see the light at the end of the chemo.

My idea of night and day difference must be twisted. They said not so many GI ailments. Check. They were right about that one. But they forgot to tell me about the bone pain. And the fire burning in my feet. And the "I'm thirsty but I'm too tired to reach into the cabinet for a glass" fatigue. This is someone's idea of different? 

Yea, ok. So its different. But it's still bad.

Just when I think I've seen the worst fatigue EVER, I discover I haven't. And is bone pain really that much better than nausea? Guess it depends on your perspective, or how badly your pelvis/legs/ankles/hands ache.

I'm not just disappointed, I'm down right annoyed. I called the nurse line Saturday morning to beg for drugs for the bone pain and the headache. The nurse didn't really want to leave the comfort of her AC in this heat wave to meet me at the office to hand off the serious drugs, cause she told me to take Tylenol alternated with Advil. Seriously? Has her pelvis ever felt like it was going to crack in half??  For this kind of pelvic pain, I expect to have a baby to show for my efforts.

This is the first time in my chemo career I've wanted or needed pain medication. Mostly, I just want the nausea to go away. I sorta get now how some folks would do crazy things for pain meds. Not that I'm in excruciating pain. Just enough pain for long enough to teeter at the emotional edge and make me consider telling my oncologist for flippin' forget the last three treatments.

But, no, I'll suck it up and take the last three treatments. But only if they give me enough pain meds to make me sleep through the following week. Or fly through it on rainbows. And in pretty dreams.




6/27/12

The Upside to Cancer

I follow a number of cancer blogs these days. My favorites are those with the more positive spin on cancer. I need to be reminded of the positives (because I whine plenty!). I get a kick out of some of the titles. Like Bald is Better with Earrings. Indeed it is.

My current favorite upside to having cancer arrived in an email yesterday. I've been chosen to receive FOUR free house cleanings - one a month for four consecutive months. Starting soon. How 'bout dem apples??  Much of my anxiety comes from being unable to keep my home clean according to MY standards.

Believe me, I'm not above playing my cancer card to get perks. Like yesterday when I was talking to a lady about renting a cabin in the mountains so I can go see my boy. It's a girl thing. Mention breast cancer to another woman and suddenly  discounts become part of the conversation. Woo!

I even played the card at work this week. Someone has been dragging their corporate feet about giving me what I want. I mention I have to take vacation time off every other week for my chemo treatments, and POOF....I get what I want when I want it. How about that??

It's important for me to remember the good stuff. Like being alive and having a relatively decent prognosis. Particularly on chemo days, like today. Its part of mentally preparing myself to be hit by a truck.

I may be sick as dirt next week, but at least I'll have a clean house. Now there's something to smile about!

It's all about the little things.


6/23/12

Not so weird after all...

I'm starting to think maybe I'm not so weird after all. All this cancer business has made me think a lot about death the past few months. We all ponder our own mortality, some more than others, but there's nothing like a life threatening illness to make you think seriously about such things.

Friends often "shush" me when I talk about things like estate planning, funeral planning, and other practicalities of the hereafter. As though they think I've given up the fight. Or I'm being negative. Or unnecessarily morbid. When really, it's none of those things. It's the project manager in me kicking in. I'm a planner. I'll be planning things even as I go to my grave, whenever that happens to be. Planning, or in this case, pre-planning, makes me think I'm in control. Even if I'm not.

When I first learned of my cancer, I immediate sprang into action and updated my will, checked to see what silly things I've put into my safe deposit box over the years, and started buying scrapbooking supplies so I can finish off the last of those umpteen scrapbooks I've been wanting to do.

But what I thought about the most was my son. How to make my passing easier for him, not just emotionally, but logistically.

We're all going to die. Even me. Even you. It's a fact of life, but not necessarily a sad fact. It's an opportunity for us. Most importantly, its an opportunity for us to get right with God. To ask forgiveness of people we've wronged in life. To put our "house" in order. And to clean out our closets, organize our filing cabinets, and make sure the right people know where to find our passwords and PINs.

I discovered a great web site that helps organize such things; MyWonderfulLife.com. There, you can leave instructions for the funeral you envision. Mine will be very non-traditional, so I'd best make sure someone knows what I'd like. You can leave letters to loved ones that can't be viewed until you're gone gone. Note where things are located, etc. Did you know the latest trend in funerals are "funeral favors"?  Like birthday party favors. How funny.

No. Do not tell me that thinking about such things is WEIRD. Or NEGATIVE. Or MORBID. Or UNNECESSARY. It's not. I like to think its smart. It will not only make things easier for those I leave behind, whether that's in two weeks or two decades, but it will help complete my project plan. Which is very important. Cause who wants to spend their last moments on earth wondering if they left a note of their Yahoo passwords where someone can find it??

6/17/12

Chemo: Round Four

I'm getting my ass kicked here. I had read that the side effects of chemo were cumulative, and I now appreciate precisely what that means. Took my 4th infusion last Wednesday and things haven't been good since. It's now Sunday afternoon and I'm wondering where the last 4 days have gone. Nausea, nausea, nausea. Punctuated with a headache and plenty of time in the bathroom.

Maybe the Red Devil is cackling at me all the way to hell and back for feeling just a little too celebratory on Wednesday after my last dose of the really bad stuff. Adriamycian, one of the more wicked chemo drugs, is often called the "Red Devil" because it is red and because it makes you very sick. I'd been sentenced to 4 doses of Adriamycian and Cytoxan to be infused every other week for 4 cycles.  This is the what my oncologist called the "kick ass rip your guts out chemo." To be followed by 4 cycles of Taxol which has lesser side effects.  This protocol is known as "dose dense ACT". Doc says there's nowhere to go from here but up....Taxol won't be nearly as bad as what I've already experienced. Break out the Champagne!

Don't know why that made me think I would escape the final punch of AC. Perhaps I was just so desperate for some optimism. Every visit to the doctor was always full of scary news. This last visit just prior to the infusion was the most positive and encouraging yet: This is my last really bad infusion. I probably won't need a blood transfusion cause my blood counts have been so good. The next four infusions will be like night and day compared to the last four. Hallelujah! Some good news.

Here's hoping that good news starts showing itself in the next day or so. Both my body and my spirit need to see the little bit of light at the end of the long tunnel.

6/12/12

Treat the problem in front of you

There has been a lot of press coverage the past few days about Robin Robert's announcement that she has developed a secondary cancer likely caused by her chemo treatments 5 years ago for Triple Negative Breast Cancer. In case you don't recognize the name, Robin is a long time anchor on Good Morning, America.

The news knocked me for a bit of a loop yesterday. She was one of my breast cancer heros....LOOK, if Robin Roberts can lick the same kind of cancer I have and still look so damn fabulous, maybe there's hope for me too! I don't even know the woman and I'm generally not a celebrity hound, but I am indeed very sorry to know she now looking at more chemo and bone marrow transfusions.

When I first met my oncologist, she warned me that chemo and radiation treatments are known to cause secondary cancers. She told the story of a patient who had recently started treatments for leukemia brought on by the chemo protocol my doctor recommended. She looked pained as she told the story. I was warned.

There's been a good deal of discussion on the forums in the past 24 hours about the wisdom of having chemo if a secondary (and incurable) cancer could result. In an interview this morning, Robin mentioned her fear that her situation would discourage others from having chemotherapy. She said she has no regrets about the chemo and would not be alive today if she had not taken it.

I agree. The possibility of a secondary cancer is no reason not to treat the problem in front of you. We can't possibly predict if we will be one of the unfortunate few who will deal with another cancer in 3 or 5 or 10 years. And if we don't treat the problem in front of us, we probably won't be alive to know.

As much as I utterly despise my chemo treatments, I will continue to suck it up and do it. My one regret is that I have not been able to muster the grace and courage many appear to exhibit during cancer treatments. I have gone into it kicking and screaming and bitchin' every step of the way. But come tomorrow afternoon, I will march my bald self into the Cancer Center of NC and sit my fanny in the chemo chair and DO IT. I will.

6/10/12

Susan G. Komen Race for the Cure

I enjoyed following the local activities around the Susan G. Komen Race for the Cure this weekend. Naturally, it has a much different significance to me now. The Komen Foundation has such a well-oiled marketing and PR machine that you can't help but be aware of their cause. But its different once breast cancer touches your life. It's a different sort of awareness. And gratitude.

My friend Wilda participated in the race as a walker. She came by to visit today and said she thought of me during the walk. Not only did that make me feel loved, but it added a new connection to the race for me. She told me wonderful stories of walking past homes along the route also celebrating and encouraging the participants.  From the house that had the sprinklers going in the yard so the walkers and runners could cool off to yard signage speaking of hope and encouragement to families and homeowners out in their yards cheering.

One of the things I appreciated most about local coverage of the race is watching all the happy, joyous and healthy people not only giving of themselves to raise money for the cause but also to celebrate their own survivorship or to memorialize those who lost the fight. Watching it gave me hope. That one day soon I will also be celebrating my good health.

Interestingly, the Komen site is currently running an article on my particular type of cancer, Triple Negative. I was already aware of most of the information in the article, but it is nice that a powerhouse organization such as Komen is helping draw attention - and research dollars - to this kind of cancer. You can read a personal story of Triple Negative breast cancer here.

So, what are you waiting for?  GIVE!  TODAY!

6/6/12

Sick and Tired of Having Cancer

As the old saying goes, I'm sick and tired of being sick and tired. I'm tired of having Cancer. Done with it. Only problem is its not done with me.

This has been the worst of my chemo weeks. Things started looking up a bit yesterday, but only after days of wretchedness and trips to the doctor for fluids and yet more medications to fix what chemo broke. The skin on the bottom of my feet has started to crack so that it hurts to walk. My eyelashes are falling out. I have no sense of taste and everything smells terrible. I cry. A lot. Doc says the steroids amplify emotions making it hard to turn off the faucet. No kidding. I am exhausted yet I can't sleep. Everything upsets my tummy. My memory is shot and I have trouble stringing together a sentence or remembering if I've paid the cable bill.

Ugh. Life sucks. Cancer sucks. Chemo sucks.

Duly looking for the bright side, I've lost 10 pounds. That's a good thing, right? And I have only one more round of the really bad chemo. The last four infusions will be with a drug that will have side effects, but not as bad. Let's hope.

I keep reading that chemo is "doable". Sure, it's doable, so long as the alternative is six feet under. Anything is "doable" under those circumstances. That's overly dramatic and morbid, I know. But the idea that chemo is "doable" is stupid to me. Doable is mastering the art of french cooking or learning to knit. Not making your way through chemo.

I returned to work week before last. My doc wishes I would not try to work right now. She says most people can't work through this. Its the only thing that makes me feel normal even if I have to massage my days around various side effects.

Feeling normal. I want to feel normal. I want to have dinner with friends, go to a movie, plant pretty things in my yard. Cook. I miss cooking. I want to stop obsessing over insurance payments and upcoming infusions. I want to go to the beach. I want to fly somewhere sunny and tropical. I want to read a trashy novel and think about having shrimp for dinner with a good bottle of wine. I want something other than....cancer. Something happy and pleasant.

I sure sound whiny this morning, huh? That's ok. I can whine when I want, sleep when I want, eat what I can when I can. Having cancer gives me the right...maybe its one of the perks of having cancer! So I'll embrace my selfishness cause it's probably one of the few times in my life I can get away with it. Whine away!

6/2/12

Chemo: Round Three

So I had my third chemo infusion on Wednesday. It was the worst yet of my visits to the chemo suite at Cancer Center of NC. Not because the infusion made me sick, but because the whole experience was just so awfully upsetting and overwhelming.

I am finding that my dread of chemo starts revving up the day before and by the time I am in the car headed in that direction, my poker face is drooping. Cried the whole way, while I was in the chair, and afterwards. It wasn't just the dread that left me in such a state, there were other influences.

One was the chaos in the chemo suite. Monday was a holiday, so they were herding 'em in the rest of the week. The place was freakin' crowded with sick people, the people who loved them, and the very busy nurses scurrying around. Right after I arrived, they had to call 911 for a man who had an allergic reaction to his treatment. I even heard the doctor tell the nurse to call 911. I got to watch the ambulance pull up and take him away. One down. Really wish I hadn't seen that.

I got to sit and watch the chaos for a good while before being called to begin my infusion. Got to truly absorb the urgent busy-ness of the place before taking my place before the needle and bags of poison that would make me feel like a cancer patient for the next 4 or 5 or 6 days. Or however long the chemo devil will choose to rack me this time.

I've read that a nearby cancer clinic is developing an outdoor meditation garden where you can take your chemo outdoors in relative quiet, weather permitting. And I fantasize about a chemo suite with little cubicles or rooms where you can take your poison with some dignity and quiet. As it is, the chemo suite is one big room with about 50 chairs. Think bull pin. It's loud and busy. Overwhelming.

There are two nice things about my chemo suite that I do appreciate. One is the bird feeders outside the windows. It's the only tiny little thing that can transport you from being a cancer patient with red fluids flowing into your arteries that will shortly make you feel like dirt to a place that is a little more peaceful and less life or death. And then there are the volunteers who come around with warm blankets and a pretty basket of snacks.

So far, I feel relatively good since this infusion, comparatively. I had extra fluids and anti-nausea meds infused yesterday. I slept well last night for the first night in a few. Sunday after infusion is usually my worst day, so keep your fingers crossed for me. And please...if you are so inclined, say a few prayers that I will be able to get through my next 5 infusions in a better state of mind. I'd really appreciate it.

5/30/12

Mothers and Sons

I have a 23 year old son living and attending school in the NC mountains. He is working this summer as a camp counselor at an adventure camp for kids with learning disabilities and ADD. He will spend his days rafting, kayaking, rock climbing, and camping in the back country. Tough life but he says he will muddle though.

He has grown into a wonderful person. Compassionate, conversational, kind, loving, and very smart. His gift is in working with the disabled, particularly children.  His grades are strong and he is already active in his professional organizations. While I appreciate the person he has become, he wasn't always such a gem. In fact, for quite a number of years, he was a significant pain in the ass. For real.

On occasion, I tell him he is lucky to be alive. He is lucky I did not kill him at some point during his "bad boy" years. These days, he is lucky to be alive for different reasons. He regularly does rock climbing, crazy jumps into waterfalls, and probably other things its best for me to not know about. I try not to watch the videos he posts to his FaceBook page on his outdoor shenanigans.

Early on, I was concerned about his reaction to my diagnosis. I toyed with the idea of not telling him until treatment was done. But I became concerned that something bad might happen during the surgeries or treatment, and he would be angry forever that he wasn't told. He handled the news beautifully. He is an emotional rock. I underestimated him.

These days, while breast cancer is mucking with my life, I am surprised to find that talking to him - or better yet - seeing him, makes a significant difference in my mood. It makes me happy in a way that little else can these days. I have seen him three times since my diagnosis. Twice for a week and once for just a 1/2 day. I come away from those visits happy. I would feel happy to see him even if I were healthy, but somehow being sick makes it very different.

I look for the goodness in him. I look for signs that I've done my job as a parent, and if my life ended today, I would leave him in a good place to continue to grow as a human being and to maturely handle what life might throw at him. We are all going to lose our parents at some point. It's the natural cycle of life, how God intends it. Knowing he will handle losing me - whenever it might happen - without letting it ruin his life is very important to me.

I haven't always been able to use the word "mature" when referring to him, but now I think I can. It feels oh so good.

At last.





5/23/12

Do It Or Die

One of my sources of support throughout my cancer crisis has been the message forums on a few of the more reputable web sites like BreastCancer.Org and the Susan G. Komen site. Early on, someone advised me to stay off the internet in this regard, but I found that advice slightly insulting, as though I'm not smart enough to know good information from bad.

Generally, these forums are full of good dependable information and support from the "sisters". (I'm still coming to terms with some of the more popular Breast Cancer terms like "sisters", "survivor", and "journey".)  However, once in a while, I read something that would suggest I'd best start planning my funeral, just to get a jump on things.

For instance, I have a particular sub-type of breast cancer known as Triple Negative. Not much is known about this sub-type except it is aggressive and doesn't respond at all to hormonal therapy, only to chemotherapy. It has a high rate of recurrence in bad places. A kind lady posted recently on BreastCancer.Org that since she was TN, 62 years old, and a healthcare professional who knows how these things go, she is choosing to forego chemo hell and live the rest of her days as best she can since we all know the survival rate beyond 5 years sucks.

Whoa!  Now, I've heard this before, and in fact...my medical oncologist even said as much, except in a much more optimistic fashion. IE, if you DON'T have chemo and you DON'T take this VERY seriously, it will kill you.  Mostly, everything I've read - and I have made it my responsibility to educate myself on my own illness - indicates that yes...the recurrence rate is high and yes...it's aggressive...HOWEVER, the survival rates are good IF you suck it up and take the chemo and do the million other things you are told to do by your doctors.

Maybe that makes me a conformist. Because, all I can say is YES MAAM, I will have the chemo and I will do whatever I am told to do to be sure I am not dead in 5 years. I am 52 years old. Waaayyy too young to start putting in calls to the funeral home to arrange my next life.

On the other hand, maybe the early advice I received was right....stay off the internet. But I really don't think so. I think its good to know - and understand - all the options. I am an intelligent thoughtful woman...I can read something, consider its worth, and take it or toss it. Cause I'm smart.

The worth of the forum post re opting out of chemo?  Zip. It's her right. I'm sure she is smart and thoughtful too. She just chooses to approach it differently. Or maybe - and I think this is more likely - she is just in a place where she is overwhelmed with the illness and information being thrown at her. Next week, she'll feel differently.  Or maybe her family will beat some sense into her. Or get a court order forcing her to do what is necessary to save her own life. Or maybe she'll live the rest of her life on her own terms. Which is how it should be.

Me? I'm conforming. I'm doing the chemo, even though I dread each session more and more. Chemo makes me sick and depressed. Doing it anyhow doesn't mean I'm strong. It means I'm weak because I am afraid not to do the chemo. I am afraid of the consequences.

My prediction? I'm going to live a long while yet. I'll likely see a recurrence and I'll likely take more chemo to fight it....down the road. I'll deal with it. Cancer will probably be what sends me to the great beyond. Someday. But for today...I'm trudging through these 8 cycles of chemo hell cause to do otherwise is giving up. No matter how sick and depressed I feel, giving up isn't in my DNA.

5/20/12

Legally Bald

It's official. Well, almost. Except for a few patches here and there, I'm bald.

Hair on top of my head is almost gone, eyebrows are running a close second. I still have eyelashes. I'm told they'll be the last to go.

What I want to know is when the hell is the hair on my legs gonna fall out?? I can't shave and I have dark hair and fair skin. Come on, already. Fall out, would ya!?!?

Had the head hair buzzed last week in anticipation of losing it. I didn't want clumps of it falling out on the floor or in the bed. Or on the sofa where I spent inordinate amounts of time these days.

I expected it to start falling out on Friday, about 48 hours post second chemo. It hung in there on Friday. And on Saturday. Then, this morning, sitting on the sofa...I put my hand to my head and brought back clumps of hair. I could literally pull my hair right out of my head. It was the most bizarre thing. Didn't hurt a bit, but it brought immediate tears.

Moments later, my friend Trish has me out on the deck with the buzz clippers taking care of whatever hair was left on top of my head. What an Angel. It must have taken a lot of love and strength for her to stand behind me and rid me of my remaining hair...all while chatting about her dog, the neighbors, and yes...how much better I looked. Bald. God bless Trish.

God bless Laura who loaded me in her car and took me to buy a wig. And then loaded me up a week later to go have the initial buzz and wig trim. THEN she took me home with her and handed me a magic marker to write all the hateful things about having cancer on a plastic sheet of bubbles. With glass of wine in hand, and music rolling, we danced and stomped all over that sheet of bubbles stomping the hell out of cancer.

God bless Wilda who also took me wig shopping. And had to hug me while I cried over the ugly wigs that lay on the table in front of me.

I don't know that I'll ever be one of those women who embraces her baldness. I'm not loving it although I will admit it sure makes the morning routine go a lot faster. And my bathroom counter looks much nicer without all the brushes, combs, and hair dryer. And it's cooler. North Carolina summers can be brutal.

I'm not ready to go out in public without a hair covering. Don't want to scare the neighbors or small children. But I do get a sense of freedom from walking around my own house bald. There's no one here but me and my dog. He still looks at me with the same big loving cocker spaniel eyes. God bless Jack.






5/18/12

Chemo: Round Two

Two chemo cycles down, six to go. I've started marking them on the calendar. It helps to see an end to my chemo hell.

Still, knowing there may be more chemo in my future depending on how gracefully my chemo cells die baby die. Recurrence. I'm not even rid of my present before I'm considering my future. Is that pessimistically weird or is it realistic?

Chemo was on Wednesday. I went back today for the Neulasta shot and additional IV fluids so maybe I won't crash this time on day 4 like last time. No crashes. They are cruel. They make me think I'm bitch enough to handle chemo, and then remind me that I'm nothing but a wuss. Smack me down.

Worst side effect so far this time is the fatigue and thirst. Got a little something extra in the IV today for the break through nausea. WooHoo. That's the next best thing to a glass of really good Chardonnay.

I've discovered that when you are touched by death (not my own, thankfully) and cancer (my own, unfortunately), you develop a really morbid sense of humor. So you'll just have to hang in there with me in that regard. Ain't going away any time soon.

I hated the port initially. The total failure of anesthesia when implanted and the on-going soreness put it high on my S list. But now, I'm loving it. I don't even feel the prick when they put the needle in and we use it for the blood draws, chemo poison, fluids, shots, etc.  Hated it now I love it. See? Even the loss of a tiny little pain prick is a win.

Hated it now I love it. That can be said for quite a few things in my life, interestingly. Like the chemo suite at my cancer center. It used to seriously intimidate me. Now, it is strangely comforting to me. It's the place we're gonna kick my cancer in the ass. Yes. It is.