One year ago today ...

I was diagnosed with cancer. I didn't have a clue and even when they told me, I didn't quite believe it. I was certain it was a mistake. However, I was wrong and for the last year I've been poked, prodded, pricked, sliced, pumped full of poison, and zapped. I thought I would never feel good again. So it was with great trepidation that I embarked on a journey to New Orleans last week. It was primarily business, but I wanted to see the city as well, and I didn't know if I would be able to walk, stand, carry and all the other activities that go along with being away from home.

But I made it. I trudged through the French Quater and enjoyed the sights and sounds and especially the tastes of New Orleans. I ate crawfish, gumbo, red beans, beignets and three different kinds of bread pudding. Oh yeah, and I presented at a conference and did other work as well. The last night there I treated myself to a nice dinner and then walked to Bourbon street and listened to jazz and zydeco, just happy to sit and drink in the music. Eventually I went back to my hotel and there he was, waiting for me, just as he had been there for me through this whole ordeal. Yes, folks Everybody Loves Raymond was playing on the tube.

It seemed appropriate that the one year anniversary of my diagnosis was celebrated doing the things I most enjoy doing, seeing new sites, eating great food, listening to live music, and watching Raymond. I am still figuring out where my life is heading and learning to live with the fear that tinges the lives of all cancer survivors:"will it come back?" But this week I finally believed that I had come back from wherever this illness had taken me. I am still facing physical and mental challenges, but even if I'd never gotten sick I would be facing challenges.

I did finish my PhD and then I got cancer, but now the cancer is gone and I'm ready to start my next adventure. I'm ready to start living. I'm ready to get my eyebrows tattooed.

Leaving the House

For a long time, I didn't want to leave the house. I'd climb in bed with a mystery novel, flick the TV on to "Everybody Loves Raymond" and stay there until it was time to get up and go to work. But then one day, I decided it was no longer acceptable to lounge around, I was well, or at least they said I was. So when friends called and made plans I felt obligated to accept. Slowly, I began to have a social life again and frankly, I didn't like it. I wanted to sleep, I wanted to read, I wanted to hide in my room. My room had been my womb, for well, actually about 9 months. It was time to emerge.

A few weeks ago I realized something. Going out was not the chore it used to be. I looked forward to movies, concerts, monster truck rallies (OK maybe not the last one), and other activities. About a month ago, I agreed to attend two concerts this weekend. I really didn't want to go to two concerts, I barely wanted to go to one, but it was all part of my plan to get out and about. When the weekend came, not only did I not dread the events, I looked forward to going. I even had a good time. Who would guess?

I was so pumped that I thought this week, I would even stand during the appropriate places in church. First there was the entrance, and I stood. Then came the reading of the decalogue, and I stood. After a short break came the reading of the gospel, I prepared to stand, and then I looked at the leaflet, instead of the usual 10 or 12 verses, there were 41 verses from the book of John. I think God was telling me to take it easy, you're not there yet. So I sat back in the pew and rejoiced that I have come so far, and accepted that I'm not quite there yet.

Next week, I'll be in the Big Easy and though I'm a little nervous about how well I'll do, I am confident and hopeful because if I can make it there, then I can make it any ... oh wait, that's the Big Apple. Never mind.

Cancer Recovery Part Deux

Slowly, I've been returning to normal, or as my friend says, I've been to returning to weird. Even a month ago I never imagined that I would feel as good as I currently do. Still struggling with neuropathy and sleep is iffy, but otherwise, not too bad. So you ask, my devoted readers (OK, reader), what's next?

Well, glad you asked. When I first was diagnosed, I read everything I could find and the more I read, the more overwhelmed and discouraged I became, so I stopped reading anything that didn't have a serial killer, clever detective, or Jane Austen on the cover. But now, I wanted to know, how do I stop this from happening again. Other forms of breast cancer have medicines that help, but triple negative comprises only 10% of all diagnoses and as yet, there are no preventative measures. My oncologist recommended Vitamin D and baby aspirin, but I wanted more. So I took up the internet again and discovered that the best results in non-recurrence came from diets low in saturated fat (which includes hamburgers, sigh), high in plant foods, and regular exercise (30 minutes per day, 6 days a week).

So I wanted to get serious about returning to health, shedding 3 or 4 pounds (or tons, whatever), building strength and changing some habits. So I joined a gym. Note, that I haven't actually gone yet, but they membership card is on my key chain. Next, I signed up for a program at Moffitt that includes 12 weeks of nutrition, exercise and weight management lessons. I've had 2 lessons so far and feel healthier already from having to write down all the food I eat. Let's face it, nobody wants to eat large quantities of junk if someone else is checking up on you.

Once you've had cancer, your risk of getting it again is 40% higher than normal people (that's what we call you folks that are cancer-free). I don't ever want to go through this again. If it happens, it happens, but not because I didn't put up a fight, kicking and screaming. I have hair now; I want to keep it.

Liminal Space

Liminal space is loosely defined as being on the threshold of a new experience, situation, or if you want to get technical, existensial plan. That pretty much describes where I am right now. Realizing the old me is gone away, but not quite figuring out who the new me is just yet.

This was really driven home to me last week when I went on my annual Lenten retreat at the convent in St Leo. I've done this for about 10 years and it is always something that I look forward to, and come away refreshed and renewed from having spent several days in quiet reflection, meditation, prayer, and eating Thin Mints. This year, I was especially looking forward to seeing friends whom I hadn't seen since becoming sick.

Something, however, didn't seem to click. I left feeling tired and alienated and the rest of the week was a struggle to get rested up. My first thought was, time to move on. My second thought was, wait a minute, let's not get hasty.

I have had an urge since being given the "all clear" to change everything in my life. Quit my job. Move to Dubuque. Get an eyebrow tattoo (just one). The world seems a strange and scary place, especially when you're locked up in a convent without any thin mints. So I stepped back and said to my self, "Self, don't make any irrevocable decisions just yet." Instead, I plan to continue getting back my strength, reflecting on the possibilities, and inflicting this blog on my loved ones. Once I figure out the new me, then I'll figure out where I belong or don't, and I'm pretty sure it won't be Dubuque.

Cancer Girl

For the last 10 months, every moment of every day was consumed with having cancer and everyone who looked at me saw someone who was unwell and struggling, Cancer Girl. I resented that that was all they saw. Then I made a discovery this week, that's all I can think about, talk about, dream about. It is still my focus. I am still Cancer Girl.

When will I feel better? When will I look normal? Will it come back and if it does, what happens to my eyebrows this time?

Everything and everybody looks and feels different. I get up in the morning and calculate how many hours before I can go back to bed. It is exhausting to be the new me.

I went to a "retreat" last week with my work colleagues. Besides the fact that I was unable to participate in many of the events that required walking on ropes and jumping off a telephone pole (I'm serious people), I felt somewhat out of it. Didn't these people know I had cancer? How could we talk about anything else? And truthfully, I didn't mention it even once, but I realized that it left me with little conversation.

I mean how long can you discuss the lesser known works of Jane Austen. I knew, however, I was really out of it when a friend told me a story and I noted how much it reminded me of an incident on Golden Girls.

So last evening, when a friend called and wanted to go shopping, I went. Even though it cut into my Everybody Loves Raymond viewing. We talked about my cancer, but we talked about lots of other things as well. We talked. We commiserated. We bought shoes. Because that's what normal people do, whether they've had cancer or not.

Two steps forward - Eight backward

This was a banner week for me. I went hatless and wore make-up for the first time in more months than I could remember. My neuropathy symptoms seemed to diminish. I felt good. I walked to lunch. Sleeping seemed better. Then I finished my steroids.

Last Saturday I was restless and anxious to jump start my life. This Saturday I was annoyed that I'd made an appointment at the hair dressers at the crack of 10 a.m. But I made it. Not to get my hair done, but to have my face waxed. Unfortunately, the growth of hair on my head signaled the return of my beard and mustache. So I sat patiently having the facial hair ripped from my face trying to figure a way it could be transplanted to my scalp. (Incidentally, my hairdresser is from Saudi so this is what I think of when they talk about Middle Eastern terrorism.)

My friend and I had a discussion recently. She mentioned that she wouldn't go out without doing her hair and makeup. What if Mr. Right was at the grocery store and overlooked her because she'd forgotten her mascara? I, on the other hand, walked into the grocery store after my appointment with red blotchy skin, a black eye, and my chemo-chic hairdo. And here's the funny thing. I got hit on. OK, it was the meat counter guy who has no front teeth, wears a hair net, and is named Bubba, but he hinted about going out for Buffalo wings. I didn't catch the hint.

I think I got off the point. I think I started off whining about not feeling so well, but why talk about pain and suffering when you can have a laugh at my expense.

After all, that's what friends are for.

Vanity?

Last week, I had my eyelids lifted. According to the doctor it was necessary to correct my vision, so I didn't argue. (Even though the thought of a knife coming that close to my eyebrows was a little nerve wracking.) I didn't argue because the end result was that I might look a little better and even though I'm not particularly vain, there is that desire to look the best that I can, considering what I have to work with.

The bad part is I actually scoff at my friends who fantasize about plastic surgery. I have several friends who are strikingly attractive but who sit and obsess over imperfections that are (a) not noticeable to a normal person, or (b) actually give their faces more beauty and character. I am reminded that this phenomenon is nothing new as I have been re-reading Jane Austen's Persuasion this week (the annotated version of course). Several of the characters are obsessed with their appearance to the point of absurdity, and the main character wins back the love of her life after her looks radically change for the better. Oh and she's also of high moral character and well read but ....

And here's a confession. When the surgeon told me they might remove my breasts, my first thought was great, now I can get implants, and they won't drag the floor when I walk anymore. It was but a fleeting thought and was soon replaced by the realities of what that kind of surgery and recovery would mean, but there was that moment.

I made a commitment that on the coming Monday I would return to wearing makeup and going hatless. But now as I look at the nasty bruises around my eyes and the Frankenstein stitches across my lids, I hesitate. Would people think I was a trucker who got into a barfight? I'm tired of being thought of as "cancer girl" and I want to return to normalcy, however, not sure this is the look I'm going for. Maybe another week or 4 or 5.

I have confidence

I've seen The Sound of Music about 100 times and I love the song where Maria is sent from the convent and sings about all her confidence. Then she stands before the captain's "palace" and wavers, so overwhelmed by the magnificence of his estate.

Over Christmas I had 10 days off from work. I rested, spent time with loved ones, and just generally relaxed. I began to plan the rest of my life as my strength returned. I went back to work ready to exude confidence and retake my place in the world, but three days into the week, I was ready to go back to bed.

Last week I sat in a meeting and listened to individuals speak with confidence about their current projects, and I realized that I seemed to have lost my nerve. Me! I felt shy and afraid to open my mouth. The workplace has a certain rhythm, and I seem to have lost the beat. I guess like any production you have to practice. Learn the parts, the motivation of the characters, and maybe just for now, pretend to be sure of myself.

When I first started dating, my mother used to tell me to pretend I was Scarlett O'Hara. Scarlett was always confident and in control. I supposed I could use her again as a role model, but not sure when to use fiddle-de-dee in a business meeting. Any suggestions?

Stopping and smelling the roses

I have never been able to just sit and do nothing. To prevent this scenario from catching me unprepared, I kept books in my purse, books in the car, and a selection of poetry in the john. I was thrilled to discover that I could download the Kindle book reader to my phone which meant another venue to read should I be caught without a book.

Times have changed. I can now sit and stare mindlessly into space. I got lots of practice doing this over the last year, and frankly, I wondered what kept me from taking this up much sooner.

I've had lots of free time of late which gave me the opportunity to catch up on my reading and view movies that I'd missed while grinding through my doctoral studies. It would be great if I could report that I'd finally made it through just one of Joyce's novels or finished reading the Faulkner collection, but alas that is not the case. Most of the books I read featured serial killers, steroid-enhanced law enforcement agents, or girls with dragon tattoos. As for film, the closest thing I came to the classics was "The Big Lebowski", featuring Jeff "the dude" Bridges?

I also had time to just sit. Sometimes alone but often with friends and family. We talked about the important things and even the trivial ones and on occasion we just sat and were quiet.

I hope that as I continue to improve, I retain the ability to just relax and not feel that every moment has to be filled with some kind of activity. I used to believe that I had to work 24/7. I was always on email or telephone solving problems, keeping ahead and in the end all it got me was burnt out and tired. So I want to incorporate separation of job and life. And maybe, eventually, I'll have enough mental energy to read something with a little more substance than crime novels. Or maybe I'll just spend more time with friends and family, and they can tell me about what they've been reading.

Dealing with stress

I've gone through the valley of the shadow of death and come out the other side. OK maybe that's a little dramatic, but you get the point. Everything seems strange and different and actually a lot has changed around me. I have a new home, a new regime is in charge at work, and I've made new friends and lost some old ones. In the past I had two methods for dealing with the stress: read Jane Austen or go back to school.

This is bigger than Jane so that leaves going back to school. School was a way of putting things aside. Yes, my life isn't so good now but I'll get this degree, certificate, doctorate, etc. and then my life will be better. It never was, but there was always the hope. Kind of like going on a really good first date. However, after finishing a Ph.D. going back to school seems anti-climatic. What do I do for an encore: another doctorate, a bachelor's in basket weaving, an M.D.?

Don't think I haven't thought about it. This is going to sound "sick", but doing my dissertation was one of the most exciting things I've ever done, so why not do it again? Actually there's a million and one reasons, but ultimately it isn't the answer I'm looking this time. I'm looking for a way to live my life right now, not prepare for the future. One lesson that I've learned is that getting a degree doesn't solve all your problems, and my walls are already plastered with enough diplomas.

I don't know the answer to my current miasma, and more importantly, I don't think I have to know right now. I'm searching and maybe I'll find a new path, a new adventure. At least I have a lot of fodder for my blog.

Setbacks

Several months ago I submitted a proposal to a conference. My chances of it getting accepted were slim, but I needed a goal. Well oddly enough it was accepted so now I am going to present at a conference this April in New Orleans. I've always wanted to go to New Orleans, and my thought was with that as a destination it would motivate me to get my strength back, as if it were up to me. Then last Sunday I woke up with a wicked sore throat that turned into a cold which ended up as a sinus infection, and I crashed for another week.

My friends warned me that with a compromised immune system and weakened lungs, I would be a target for every germ within a 100-mile radius. So, it was inevitable, because everyone I encountered the week before had a cold, was getting over a cold, or felt themselves coming down with one. While I suppose that makes sense, it wasn't what I had anticipated. I feel that I have lost a year of my life and am anxious to make up for that lost time, personally and professionally. But little setbacks keep cropping up that inhibit my progress.

I suppose I should be grateful for the progress I have made and believe me, it is substantial, but I know there is so much more to overcome. Right now, my first goal is to be able to walk 1/10 of a mile by April 6. That is the distance from my hotel to the conference site in New Orleans. The good news is that at its current rate of growth, I won't have to worry about messing up my hair. Well thats one thing off my mind.

The Spirit is Willing ... But the Flesh is Weak

Several years ago my friend and I started a New Year's tradition. We would each write down one thing we wanted to accomplish then gather round the fireplace and burn the slips of paper we had written on. The first year we did this both of us accomplished our written goals. So we decided to try it again last year but due to scheduling etc. we did it by phone and left out the burning part. Well, I think you know what happened to me last year (or else you haven't been reading this blog very closely). Oh, I might also mention that I did not have black-eyed peas on New Years day last year which according to my mother is a sure fire recipe for disaster. (BTW, I'm really NOT superstitious.)

So this year we got together, lit the fire, and invited a few friends to share the ritual. My first and most important goal is to get back some physical strength. I have so many things I want to do, so much time to make up for, I'm ready, willing and eager to get going. But, unfortunately, I just don't feel like it. Now there are those who say, "give yourself a break." After all, I am still suffering multiple side-effects from chemo and radiation, but somehow, my mind doesn't accept all this.

That is why when several painful skin lesions appeared this week, I was horrified. The radiology NP explained to me that patients still experience side-effects up to two-weeks after their final treatment. She even described the color of the ooze seeping from the lesions so that convinced me she knew what she was talking about. I want this to be over. I want as my sister quoted from Good Will Hunting to "let the healing begin." But my flesh is in control right now and whether I listen to it or not, it goes about its merry way doing what it wants.

So for a few more weeks, I will bury myself in front of the TV and lull myself to sleep with fantasies of striking it rich, so that I can pay someone else to get me into shape.

The Party's Over

Well, I guess it wasn't a party actually, but as of this week, I am no longer receiving treatment for cancer. On the last day I cried a lot. Whether they were tears of joy or just plain exhaustion I can't say for certain.

I feel as if my life has been on hold for the last 8 months and now I want to dive back in, but I don't have the energy. It's hard to generate enthusiasm for the mundane tasks of daily life, and some things just don't seem to matter anymore. Classes begin on Monday, and faculty are writing me today to complete tasks that I know for certain can wait until the weekend is over. Previously, I would have dropped everything to do whatever came whenever, but today, I just don't care.

Perhaps in a few months my energy will return and once again I will spend every free moment keeping up with email from the office, but deep down, I don't think so. I want to enjoy life for a while and be with friends and family, find new ways to highlight my eyebrows, you know, the important stuff. But mostly, I want to feel good again and get back my strength and stamina. And then, I want to figure out what I want to do with the next few years. Two years ago, I was spending my time finishing my Ph.D. Last year, I was spending my time dealing with cancer. Now I need a new project. Something that will engage me as much as doing my dissertation but without the subsequent diagnosis of breast cancer.

I don't know yet what that is or even how I will find it. Part of me is anxious to make up for lost time, but the other part of me realizes that I need to recover before taking on any Herculean-sized projects. So for now I will continue watching mindless T.V., reading mystery novels, and looking at my elliptical trainer and thinking about getting on it. Yes, it's a wonderful life. Really it is.

A departure from our regularly scheduled program

For those of you who have heard me sing, you would be probably be surprised (horrified is more like it) to know that as a teen I not only sang in the church choir but was in a trio. What's more, I also played the piano and at times even the organ (very badly but they were desperate). In addition to my trio, there were men's quartets, duets, soloists who could actually sing, and various other ensembles that uplifted and inspired. (OK you know I had to do it: Unlike the pop tunes and praise choruses that pass for music today in church which is why I attend the service that has no music. Sorry, rant is over.)

The person who made all this music happen was my friend and hero, Theola. She led the choirs, organized and practiced with the groups, accompanied the singers, all with dignity and calmness. She was a strong woman in an age where women who were leaders were few and far between.

I write this for her because she is one of my regular readers and today is her 90th birthday. I want to thank her for her readership, her friendship and her prayers. But mostly I want to thank her for being a role model and for the music whose memory I still cherish.

Happy Birthday Toadie!

New Year

Today officially starts a new year. Last year at this time I had a man in my life and had just earned my PhD. I had assumed that my life would change, and it did, only not in the ways I had imagined. I am still trying to process what has happened and figure out where my life is going.

In fact, I don't want to just hop back on the same merry-go-round and get back to life as usual. I am forever changed, and I see things through different eyes. Eight months ago I just wanted to know whether I would survive and whether my eyebrows would fall out. Now, I want to seek out new experiences that will help me to continue to grow as a person; I want to help people in the ways I was helped; and I want to find value in what I do for a living. It's not much.

Yesterday, I picked up my mail and found a letter from a Ford dealership. I haven't owned a Ford in six years but inside was a check for $185, the result of a class action suit, the details which escape me. I took it as a sign and deposited it immediately before anyone realized they'd made a mistake. This year would be off to a good start. It's almost time to get my eyebrows waxed and now I've got the cash to do it. Happy New Year to us all!