...Lace Up Your Gloves...

Jennifer Shawn Hoffmann--July 27, 1971-April 21, 2009

Godspeed, beautiful girl. I'll see you on the other side. Goodbye. I love you (so much)...

Someone posed an interesting question the other day. Paraphrased, she basically asked why metastatic cancer patients don't want to "kick the asses" of those who haven't recurred, particularly when they ramble on about insignificant things. Interesting.

I thought about it for a while, because I understood the concept, and my first reaction was, well, even for those of us who don't hear the ticking in the background, quite honestly, there are better things to focus on. Luck is all relative and simply to be diagnosed with breast cancer, you know - appreciating life is one thing. Lucky? Not so much.

Besides - here's a little-known secret: Even being metastatic, I still bitch about random things. About bosses and clothes not fitting right. About family members that are annoying and bad hair (when I had hair) days. Honestly, I'd be surprised if there was a single person with mets that doesn't bitch about something unrelated to cancer. Anyone who has been diagnosed, whether the first time, or the umpteenth, will never get the opportunity to "just deal with this trivial thing instead of cancer" ever again.

I've struggled with this at times. Am I entitled to these trivial problems? Do they really exist? Nine years ago, Monday, I was diagnosed for the first time. It wasn't until 7 years and 4 months later until it came back.
I am the anomaly.
I am also metastatic.

And I have to learn not to kick my OWN ass so much sometimes. You know? It never makes me feel any better.

I feel the "grand scheme of things" is so subjective. Would I rather deal what I did after my mastectomy and the drains and the healing rather than whether or not my brain mets will have stayed stable after the next scan. Maybe. Would I rather not have to deal with any of the above options? Hell yes! But I'm also aware that the horse is out of the barn and that each person's journey is different, their own, and no less significant than anyone else's.

Somehow or another, I still see the glass half full. Hell, I'm still alive and not planning to check out anytime soon.

Sometimes I feel like a failure. As if I've let people down by not being the person I used to be. I know this concept is ludicrous, but maybe I feel I've let myself down. I also realize I don't have much control in the matter at times. Instead, I have to remind myself that I am human. Like the rest of you people.
And that I am entitled to be so.

Next topic. I came into work today to find a card on my desk from a co-worker/friend.

The most beautiful stones have been tossed by the wind and washed by the
water and polished to brilliance by life's strongest storms.

Not fair, making me all teary first thing in the morning. Talking to her a little later, she started telling me how hard it must be for me at times to get bombarded with "how are you" "how are you feeling" "what's going on with your treatment". She had really noticed it at a meeting we both attended a couple of weeks ago. It was so amazing to me that she picked up on that, and really 'got it' from seeing it firsthand and me never mentioning it.

Next. That conference is coming up. The dreaded conference. It's always been the the same people having the same conversations, drinking the same drinks. Now, there's a little twist on the situation. I now also have to be SuperCancerGirl and answer the same questions 653 times. Again. No hair. Again. All the while, remembering to nod and smile appropriately. Sensory overload ahead...

Courage does not always roar. Sometimes courage is the
quiet voice at the end of the day saying,
“I will try again tomorrow.”

- Mary Anne Radmacher

(This is the entry in which she comments on her feelings about outside-the-office meetings... these days.)

I was going to title it "progress", but since in the cancer world, progress (or its variant, progression) isn't always a positive thing, I figured I had better not. Anyhow, back to the random thoughts.

The other night Greg and I went to have dinner with someone (a new friend, now) we had met through a mutual friend. She and our friend became friends in their college days and have stayed close, since. We first met her in last year's Team THRIVR golf tournament, and have since run into her on a couple of occasions while she was working. I'm not going to use her name here, mainly because I haven't asked her and she has a fairly public persona and probably doesn't want to be Googled. Particularly now.

We recently found out that she was diagnosed with breast cancer - she had her first mammogram after she turned 40, and there it was. WTF. Ironically, the last time we saw her before this week was mid-December, the day before she had to go in for a 2nd (diagnostic) mammogram. Prior to that, it had been quite a few months. Anyhow, our mutual friend let us know, and also told her that I (we) would be a good resource if she ever needed one. The expert on everything I've never wanted to know...

Long story short, we exchanged a few emails, discovered we had some very similar personality traits, and Greg and I had dinner with she and her husband this week. She has a very sweet, very supportive husband, and two of the cutest, most polite kids I've ever met (3 and 6).

I really enjoyed talking to them, and I think I was able to answer some of their questions. Like us, they are well-versed on what's going on with it all, yet are cautious not to cross the line of OVER-researching. Her pathology is eerily similar to what mine was when I was first diagnosed in 2000. I sometimes still can't believe it will have been nine years at the end of this month. I realize that each situation is so different, yet so many have certain similarities, particularly when they involve similar personalities and how people deal with crises. I'm still in amazement as to how much progress in diagnostic techniques, surgery techniques, and treatment recommendations have been made in the past nine years. Progress. So much progress. It gives me so much hope for the future.

And then, there's me. Anomaly me. Every now and then I get an inkling of doubt about talking to people recently diagnosed and telling them my sequence of events. I know that I probably would have been my own worst nightmare back in 2000 when I was first diagnosed. On paper, my history looks like the person for whom it never should have come back. Stage 1, no nodes, no family history, 7 years clean...but it did. Then again, 28 is very different than 40, or even 37 for that matter. Also, I feel it entirely depends upon how you are equipped to handle these things, and what type of support system you have. In any case, thankfully, the inkling passes and I can't say that I have ever held back from telling people my entire story - even as it continues to unfold. Even when I see the look of terror from the girl in her mid 30s sitting next to me in the shower line at the 3-Day who has just reached her 5 year mark and thinks she is home free. I have to remind them that I am the anomaly. In the big picture, I realize that I have a lot of things to say that people simply need to hear. The positive things.

Our new friend? She rocks. She's strong and talented and has conviction and faith and love around her and I do believe she is one of the people that will put it behind her as soon as possible. Hell, I did. I do every day, in some ways. In other ways? I'll never have that opportunity again.

There's no putting it behind me because there is no cure. Not yet, at least. Right now, there is also no more NED. Not until they find something that crosses the blood-brain barrier. It's been an interesting transformation, coming to terms that there simply is no putting it behind me, just treatments and scans and waiting and yes... life. That's the important part. The rest are temporary lapses. I suppose that's how I still get to put it behind me at times.

There is, however, stable. Stable is a wonderful thing and I hope to be there for as long as possible. At least until they find that damn elusive cure.

Meanwhile, there's life. And damned if I'm going to miss out on any of it.

(I apparently like to use the word 'damn' when I'm making a point... even to myself. Funny. Never noticed it before...)

Oh, it's a strange existence sometimes...

Sometimes, I simply forget. Sometimes I get caught up in time, or it's one of those days that perfect moment when I wake up, right before I open my eyes and nothing can touch me. Sometimes I'm laughing and I don't remember. Sometimes.

Sometimes when I forget, I have to pee (which are typically mutually exclusive). But it means I look in the mirror. And immediately remember. I remember that I can't 'pardon this interruption' any longer and the rest of my life is going to be peppered with scans and results and spending time in The Waiting Place. Then again, I'll wait and scan and hope and live for as long as I possibly can...

But sometimes I remember. And at those times, I work hard at not getting lost in the limbo. I'm not sick, but I'm not well (this is pneumonia-related, not necessarily cancer-related). I'm not hideous, but I sure as hell ain't anything close to pretty these days. It's such a trivial thing, but it really screws with the psyche at times to look in the mirror and not recognize the person looking back at you. It's such a small thing - as I'd trade a lifetime of baldness for just that... a LIFETIME... but in the meanwhile? Enough with the bald already. I know I went through this with the chemo, too, and I know it will pass. It WILL pass. (Do you hear that???)

I was looking back at some old entries from a year ago today. Simple curiosity as to where I was last year at this time. I found one from 2/18 where Jill left a comment that said "strong heart, bare head" in relation to my most recent MUGA scan. It made me laugh. Laughter is always welcome. This year? Bald as an egg, still.

Meh, whatever. Life is good and hair will grow (we hope)
Meanwhile, I just need to continue to laugh as often as possible...

Monday we picked up the results of the PET scan I had last Thursday. It was a mess. All sorts of hypermetabolic activity in the lungs and such. The thing is, Dr. Cavalcant had signed off on it, and knowing him, he wouldn't have given us the report without talking to us first if it was bad news.

So we hoped.

Reading the scan report (because of course we are self-proclaimed medical professionals) we came to the conclusion that all the lung and related junk was DEFINITELY pneumonia-related. The report even made reference to something along the lines of infectious disease or something. There were a couple of lymph nodes in the upper abdominal area with slight metabolic uptake, but it was most likely due to the infection. I had a feeling this scan would be screwy due to the pneumonia. But of course, we didn't know for certain.

Now we do. He was thrilled with the scan, all the major organs are clean, and he felt the other stuff, including the lymph nodes was pneumonia-related! Damn pneumonia. Then again, in this case it's a wonderful thing, because it's nearly gone, and NOT cancer. We've had quite enough of that, thank you.

So, the scans are done. And, I gained a pound this week! (Which sounds like a ridiculous thing for ME to be happy about, but I got a little scrawny during the pneumonia process.) The Herceptin continues, because by God, it's WORKING - and I continue to go about the business of living, loving, and growing hair.

There are worse things...
Life is good.

When is the last time anyone out there (aside from you math teachers) gave any thought to simple geometry? I know I didn't. It's been a long, long time. I'm getting old, you know.

Today we got schooled by the radiation oncologist.

He didn't have the MRI results in front of him (not quite sure why) but we relayed the news that the two largest spots shrunk by nearly 50%. Shrinkage is good. What we heard next was even better. He informed us that the measurements we were getting were diameter (or radius, I forget) but in any case, it wasn't VOLUME. A 50% (or almost) reduction in mass equals an 87% reduction in volume. Geometry. Who knew.

We also learned that it's possible that we can see some more reduction in size over the next couple of months as while the radiation is done and gone, the next generation of cells and the generation after that can continue to die off.

What now? In three more months I stuff earplugs in my ears, sing in my head as loudly as I can, and endure the deafening noise of a follow-up brain MRI to see what's going on in there. Should something crop up eventually? We also learned that there are more targeted forms of radiation that can still be used to treat them. But, we're not there yet.

Where are we? Right now, we're stable. We're asymptomatic, and we're waiting for confirmation that there's nothing in the rest of the body. And continue to live.

What else is there?
Well, maybe hair...

Time passed... as time passed, the time approached for a follow-up MRI after the radiation. I had this image in my mind, an unrealistic image at that, that the radiation worked as some type of magic eraser and when I got the scan results back... VOILA! No more cancer!!

I'm not sure if I ever really believed that, but it was good to dream...

The results were that the two largest spots shrunk by almost 50 % (17 mm to 10 mm and 7 mm to 4 mm) but they do still exist. There is no way to tell if they are dead spots or live, but they are there, as are some more that were there before. However, there is nothing new and no progression at all.

Greg recalls the radiation oncologist (who we see next Monday) saying that success in this type of treatment is shrinking of the tumors, so by these standards, the radiation worked. The thing with the brain is that it's so different than treating other parts of the body since there is no effective treatment that crosses the blood brain barrier. So we scan and wait and monitor, and if it should start to progress eventually, we deal with it then.

Meanwhile, I live. It's all I know how to do.

This pneumonia thing really threw my schedule off with everything cancer-related. I'm back in for Herceptin this Wednesday, then back for another PET on Thursday morning. It seems like such a whirlwind since the last one - it was just before the 3-Day, just before I got up and told the world that I was still dancing with NED. I had no idea what was lurking inside. But, we deal with it - like we always do. As much as the PET makes me nervous, I know that it brings knowledge, and with the knowledge we can evaluate my options and know what's going on inside, and if need be - how to treat it. I still have an irrational fear that I'll never have hair again...

I hate that this is a part of my life, and always will be. I hate that it has touched so many people that love me. I know that if I tried the rest of my days, I would never make sense of it, so I'm not even going to try.

What I do know is that I'm going to continue to live with everything I've got for as long a time as I've got.
I don't know how to do otherwise...and the truth is?
I don't want to.

The world took some interesting twists and turns...

New Year's Eve was just how it should have been - from our traditional early few cocktails with friends at Caffe Boa, followed by heading next door for some decadent sushi at Sakana, and this time, complemented by a stop at the Bell's party to spread a little New Year cheer before heading home just in time to see the ball drop in NYC. Just as it should have been...

It was a good year, 2008. It was a full year, it was a hard year in many ways as we dealt with far too many medical things, but interspersed with the hard bits were always things that made them seem not so bad... the Grand Canyon and spring training baseball and San Diego and the golf tournament and New York and seeing friends and baseball and weekends camping on the Mogollon Rim and Cincinnati/Kentucky and lots of hikes and the 3-Day, of course, finished off by the most incredible winter wonderland Christmas we could have hoped for.

It was good, despite it all. It really, really was.

This is old news, isn't it. Back to 2009...

We hiked on Thursday and Saturday, Friday I wasn't feeling fantastic, and Sunday I started coughing. Monday I went to work but by the time I woke up on Tuesday, I had a fever of 103-ish. Not so good. I immediately call and make an appointment with my primary care physician (who I don't like anyhow and am firing next time I have to go back there) who looks at me with her unexpressive eyes and tells me I have bronchitis. (Of course, when they take my vitals, my temperature is normal, my blood pressure is fine, and my pulse is normal - stark contrast to the fact that I thought my heart was going to blow out of my chest in the waiting room and the fever at home.) So, we leave, I'm feeling dizzy, I sit down on some chair in the hall and she tells me that I probably didn't drink enough water. Gah. Homeward bound. Two days, and nothing improves. Wednesday night I wake up with 104 and Greg says enough is enough. In to Cavalcant's the next morning...

Nutshell version? I didn't go home for 8 days...
They checked me into the hospital the afternoon of 1/8 and kept me until 1/16. Pneumonia. Not just pneumonia (would I do anything the simple way?) but a SUBSTANTIAL pneumonia.

Strangely enough, in my 37 years and various and sundry health challenges, I've NEVER spent a night in the hospital except for the mastectomy when they surgery was so late they put me in a room and let me go in the morning. This? This was a whole different ballgame...

I learned quite a few interesting things about the hospital during my stay.

• When you pee in the "hat" in the bathroom and it looks like you haven't hydrated in a month and a half, it's an illusion.
• Food service, at least for those of the vegetarian persuasion, is sorely lacking. Or perhaps it's just that I can't get myself to eat grilled cheese, mac and cheese, or peanut butter and jelly each night for dinner. Fruit only goes so far. Then the nutrition people come up and start telling you you're not getting enough protein. No shit. (Side story - I finally agreed to a scoop of tuna salad, which they decided to bring me as a bedtime snack. WHO brings a scoop of tuna at 8:30pm??)
• The phlebotomists there ROCK. Seriously ROCK. These chicks didn't miss my temperamental, small, rolling, over-used veins ONCE. And believe me, I probably got stuck no less than 35 times over the course of the week.
• A thoracentesis doesn't hurt quite as much as I thought it would. However, I wouldn't have guessed that I had a wine bottle's volume full of fluid that needed to be extracted.
• I wonder how many bags of IV antibiotics I went through? Not to mention the hydration, the potassium, the 2 units of blood...

Finally, finally, at long last they let me come home. Finally.

It was hard. Really, really hard. Ironic, isn't it? I've been through so much with the cancer but this was really difficult. It was hard to be away from Greg, hard to feel so incapacitated and know that there was nothing I could do about it except allow them to keep me as long as they needed and treat me so that I got better. I did learn quite a bit during those eight days though...

I learned patience, or at least, I made an effort to be patient. I'm still learning.

I learned that I needed to take care of myself this time and not worry about everyone else all the time and that work would be there when I was ready.

I can't quite seem to find the words to explain how amazing Greg has been through all this. The hospital stay was the longest we've been apart, and the being apart was hard. The little things - just waking up in the morning, the rolling over in the middle of the night. But he was there every morning after I woke up, and every night until before I went to bed. He juggled trips to the hospital, the dogs, work, fielding calls from friends and relatives, the house...

I always thought I knew how much one person could love another, but I'm continually reminded how fortunate we are that we managed to find one another in this world. There's no way I would have made it through any of this without him.

So, here I am at home. I'm off the antibiotics, and last Friday the doc told me it would be about a week before I saw marked improvement. I'm hoping this is the week. I do feel better, and my fevers have been much lower - only one a day, typically. Progress. Slow progress.

(Kudos to anyone who actually made it through to the end of this novella... yes, I realize it's not fiction but I wish parts of it were.)