The Gazmoy Cancer Chronicles

Three Years

2010-12-03T08:04:00.002-06:00

I've heard from many of you that you want an update - how am I doing? How are things now? The short answer is, I am well. The cancer hasn't recurred. My sense of self has come back, for the most part. But, especially at this time of year, I feel echoes of three years ago.

Three years ago this morning, I woke up knowing that in just a few hours I would be caught up in the medical machinery of surgery - the gowns and IVs, the businesslike bravery expected of patients, the paperwork and formal rituals of permission. And I knew that the next time I woke up would be in recovery, with bags of saline where my breasts had been. My memories are faded now, with certain moments standing in to represent the day.

I remember waking in my bedroom, it was still dark, and chilly. I sat up, and the reality of it all - the cancer, the surgery, the changes - all hit me at once. In a moment, though, the inevitability of it all settled in, and I brushed those quick tears away.

I remember seeing myself whole for the last time, in the shower. I wasn't worried about losing my breasts and looking normal as much as I was just...attached to a part of me. Those tears went with the water, and I hardly felt them.

I remember being in the car in front of the hospital, in the moment before committing - once I opened my door, the process would take over. My mother had reminded me the night before that by the end of this day, I wouldn't have cancer anymore. I concentrated on her words, her voice as she said them - the hope, and the excitement - and opened the door.

I remember the funny busy-ness of the prep, all of which felt so unreal. I remember Dr. S's cool hands on my chest as she marked out the territory with a Sharpie. I remember fighting with the nurses to let me keep my wedding ring on while I was in surgery - a way to hold love in my hand, and a way to not be completely naked and unprotected.

I remember the last few minutes, alone with Zack, before they wheeled me off, a space of safety carved out of a frightening day.

I remember waking up, groggy, feeling like I'd done a zillion chest presses before being wrapped in an iron band. It hurt to breathe, nausea and tightness and pain all inextricable, and too much for my drug-fogged mind to tease apart.

I remember my parents, standing in the doorway of my room, lit from behind by the light of the hall. They just wanted to see me - to assure themselves that no matter what had happened to me, I remained.

Many of these feelings rstay with me, even now. In quiet moments, I'll sometimes be startled by the enormity of it all - the loss, and the fear, and the hurt - but the routines of everyday life soon damp it back down and I go on. I'll sometimes pause, wishing I could just have a little more time to come to grips with things, but I know that a day will pass in 24 hours, no matter what happens in that day. And I can do anything for 24 hours. I still find myself reaching for strength, for support, and my choice to finish my doctorate - and the isolation that requires - sometimes resonates with the sense of overwhelming aloneness and vulnerability cancer treatment could create.

The treatment I am on now - the hormone therapy to keep any residual cancer at bay - is easy, relative to the chemo, surgery, and radiation I went through three years ago. At the same time, it is difficult in a different way. It is constant, and permanent, and irritating, and must be integrated with my regular life. The medicine accelerates the processes of age - wrinkling, aches and pains, insomnia, difficulty putting on muscle mass, etc. The inevitable emotional transition from being a young, desirable woman to being a middle aged, invisible woman is inextricably linked in my mind to the cancer and surgical de-sexing that I went through. Veterinarians call it "altering", and I do feel, in many ways, altered. I know that this is where I should say something enlightened about creating my own sense of sexy youth, that femininity is inside not outside, and that cancer survivors can be cancer vixens, too. But even this, that I know what the "proper" response is but can't seem to make myself have it, in some ways complicates my feelings about the whole matter. Besides, I have never liked pink.

The transition from patient-to-person has been hard (though, it is an extraordinarily nice problem to have). I'm often skeptical of good things - that they will last, or that there isn't a nasty surprise buried inside. I'm easily tired, I ache, and have physical limitations that I need to work around, all of which can be frustrating. I find myself feeling alone and isolated. And, I am very, very tired of trying to find shirts that fit.

But here I am, in 2010, past the halfway mark on the journey to 5-year survival. That I'll be OK, that I will *live*, gets more real with every milestone. In many ways, the troubles I've had are all repurcussions of taking on the mantle of an everyday, ordinary life in all its unpredicatable joy.

So, again, in short, I am well. I am working at a job I enjoy. I am finishing a dissertation that...I will finish. I have family and friends to love. Zack is happy in his new profession. Mostly, I get up every day and do what needs doing, look for joy where I can, and make things work. Like anyone does. Because a post-cancer life is an ordinary life, with everything that means. If you would think of me today, do so by remembering what you live for, and what gives you joy.

18 Months!

2009-06-03T14:40:00.003-05:00

Well, she did it! She made it to the 18 month mark cancer free. We are celebrating and doing a little happy dance. Next goal is 5 years. We can do it!

This weekend (6/6 & 6/7) is the Avon Walk. Lynn is going to walk 1.5 marathons in 2 days. If you are interested in meeting up with her anytime during the walk, give me a call on my cell. If you don't know it, email one of us and we'll give it to you. A big thank you to everyone for their support in this--it is a big accomplishment for Lynn and a big day for breast cancer research.

More Info Here (Don't Forget to Check the Cheering Stations)

The Story

2009-04-01T05:59:00.005-05:00

Lynn did an interview with NPR's "The Story". It aired yesterday afternoon. As if you all didn't know, she is wonderful. Enjoy and feel free to post comments here. As you are all well aware, this took a great deal of effort for Lynn to do and it was a very selfless act. I would request (not that I assume that any of you would do otherwise) that you are all sensitive in your comments here and to Lynn about the show.

Team Lynn: Year 2

2009-01-04T15:43:00.003-06:00

This coming summer, Team Lynn is going to walk in the Avon Walk for Breast Cancer once again. This year will be different as Lynn will be forgoing the mascot role and donning the team captain cap. She will be walking alongside friends and family during both days. You can find all the details here. I will be maintaining the site, so if you have any questions, please feel free to let me know.

I am looking for a dedicated crew for the event. Depending on the size of the team, we will have 1-2 cars and are responsible to Team Lynn's support throughout the two days. This means additional food, supplies, clothes, etc on top of moral support and communications between walkers and fans. All those interested, please contact me as well as space is limited.

To the fans: Thanks for your support!
To the team: Good luck in training and Go Team Lynn!

Year One

2008-12-03T11:46:00.002-06:00

I just received flowers celebrating the one-year anniversary of being cancer-free. Thank you.

It has been a long, crazy year. Of course, I was still having radiation and more surgeries until May, so it hasn't all been a vacation. Looking back at my experience of the year, it hasn't been a smooth recovery either physically or emotionally. But, adjusting to - ahem - a mortality concern feels a lot like learning any other new skill or way of thinking. At first it was overwhelming, and everything I did I perceived through that filter. Then it was frustrating. I couldn't escape, and I still had (have) residual physical pain. Now I am working at integrating my new experiences with what came before. By the way, I can tell you from insider experience that those people who say their lives completely change after cancer and nothing from the past matters? They must have better drugs than me because in my experience, the things from the past just get colored by the new reality, not erased. (If you find out what those drugs are, please ship a box to my address. Next day air.)

The most positive part of this year has been the huge changes in my family dynamic, particularly around cancer. My siblings and cousins are being tested for the gene that made me so vulnerable to cancer, making sure that my generation won't get sucker-punched again. This has already paid huge dividends. My mom is recovering from a double mastectomy to remove a very early stage cancer, one that would have been found in a few years - and have been much more advanced - under normal screening procedures. My cancer was the size of a lime, hers the size of a grain of rice. She needs no chemo, no radiation, and we never have to worry again about her dying of breast cancer.

I've noticed that many people with cancer struggle with the purpose of it. Is it punishment? A test? A lesson? A trial? Lots of people look to a divinity, or to the universe, for answers. But I already see the payoff of my experience in my mom's diagnosis and my relatives' testing and screening. I can't have children, but I have given something precious to the next generation: knowledge. My mom will see her grandchildren grow up, and they will get her love and presence as part of the bedrock of their world. Caty, Jim, my cousins, they all will know for certain whether they have the mutation and will get access to the screening and prevention they need to protect themselves. More than this, though, we talk to each other a lot. We call, and message, and email, and send pictures, and generally stay in touch. We're not just related, we're family.

On the more negative side, though, I'm still feeling a stew of uncertainty, physical pain, emotional exhaustion, and a dollop of regret. As my horizon creeps forward, I must make choices and plans but all of my prior bases for decision have been blown away. In some ways, I have already done the most important thing I will ever do - I protected my friends and loved ones by being an example. What do I do now?

I suppose that is a question for year two.
Thank you again for everything. I couldn't be here without you.

Alter Egos, Mixed Feelings (or, Cancer, Leave Us Alone)

2008-11-10T06:48:00.003-06:00

First: I remain free of evidence of any new cancer.

The world, though, seems to be covered in pink and cancer keeps coming up as a topic everywhere. I just can't get away from it.

Is it fair that I love the incredible community action around breast cancer, but absolutely hate going to the grocery store in October? Bags, mugs, shirts, hair things, yogurt, soup...if I wanted I could go a month wearing, using, and eating nothing but pink be-ribboned products. I am passionate about breast cancer awareness, early mammograms for everyone, gene testing for families with a history of cancer, and comprehensive prevention. But, jeez, leave me alone for a week! When a bored checker at Jewel asked if I wanted to donate, nodding to a construction paper-wrapped soup can next to the credit card machine, I nearly replied that I'd already given two 34Cs to the cause, but bit my tongue just in time. And the radio ads - gah! And a political advertisement that made me incandescently angry, so angry I voted against the candidate. The photo on the front of the card showed a father in a tux walking a faded-out bride down the aisle. The text read something like (in my fury, I shredded it), 'A father's dream is to walk his daughter down the aisle. But what if breast cancer took her before he could? Candidate X voted against funding mammograms...vote for me instead'. If my father had received that card! Thoughtless, cheap, emotional manipulation. Grump, grump, mutter, mutter.

We had appointments at a new dentist this week, which meant I faced the inevitable new patient paperwork. I dutifully checked all of the new boxes - yes to cancer, yes to surgeries (how many was it, Zack, 4? No, 5, there was the port surgery. Right, I had nearly managed to forget that moment where I came out of the anaesthetic-induced memory loss and remembered I had CANCER, I am so glad the dentist appointment reminded me of that), yes to radiation, write in chemo, list the meds. Not fun, but I expected that little, prickly reminder of my fabulous year of fun and prizes. During the appointment, though, the dentist asked if the cancer was genetic (nod), because it runs in his family and he is worried about his daughters but they refuse to be tested. Well, doc, (scrape, swish, Mr. Thirsty), if it runs in your family, you could be tested first. If you are negative, they can't have it either. (Turn your head, please. Perfect.) If you are positive, they will know exactly which mutation to look for, making the test about a tenth the cost. (Just a little polishing now.) The dentist vowed to get tested at his next doctor's appointment, and I knew I had done a good thing. "Way to go, Cancer Girl," offered Zack, hanging a name on what we'd both noticed as my alter ego.

Over the weekend, we saw a play with friends. A sub-plot involved a little boy dying of consumption. (Ever notice how many movies and TV shows have cancer as a plot point? A crapload.) At the end, the townspeople gathered by the grave, and the main character gave a speech. Let us remember this death, to remind us to be good, to be kind, even if we go out into the world and do great things let us always remember this moment of fellow-feeling. It went on for ten minutes, while the cute children looked misty before they clasped hands and walked off into the fade-to-black. But what about the kid? I wanted to stand up and yell. How nice for you, to have your lives transformed by this catalyst, to go out in the world and be better for knowing him. Ilyushin is still dead! What did he get out of this deal? What if I don't want to be Cancer Girl? I wanted a kid, and a career, and a long future with my beloved, and instead I get to inspire dentists to get BRCA tests!

And, now, we come to the real reason I am so overwhelmed. Two weeks ago, Zack and I went with his cousin to the Mayo Clinic as support troops while she had her mastectomy. N did great - she was up and lively by the first evening, in great spirits, and is healing well. What got me was her roommate - double mastectomy with axillary dissection staged at 3C. She looked so...broken. So fragile, and sick, and hurting. So tired. She was obviously well-loved and well-supported, she had constant visitors. In a quiet moment, I introduced myself. "Will I be as skinny as you, when I finish?" she asked, wistfully. "Not everyone gets fat from the chemo", I replied. (I carefully avoided discussing bucket days). "How are you, now?" she finally asked. I held out my arms and smiled for her inspection, saying, "I was in that bed a year ago". "I can't believe it," she breathed. Neither can I. But the world doesn't seem to want me to forget it, either.

Six Months....All Clear

2008-07-09T16:26:00.002-05:00

Today I had my first official post-cancer checkup with Dr. B. and I remain NED (no evidence of disease). Go body! I know we said we were done with the blog, but for those of you who still sneak back to see if we maybe said something else, I'll still post about the big medical checkups.

The cancer statistics for recurrence and survival take the 'definitive surgery' as the post-cancer starting point. So even though I feel like my post-cancer journey started in April, after the final surgery, I am officially 6 months out. I really can't imagine how people who do chemo after their mastectomies feel about the starting point - I certainly wouldn't feel 'post-cancer' if I were still bald and having bucket days. I have a hard enough time accepting radiation as cancer free time.

The transition back from my cancer adventure has been much harder than I imagined. This makes me pretty grumpy: since I had 13 days from diagnosis to chemo at the beginning, I feel like it would be fair if I only needed two weeks to transition back. Thank heavens I am an academic and get summer vacation - I have really needed the time to get my head (and heart) around everything that happened to me this year.

An example - I cry instantly, without warning, and seemingly without (specific) cause. Now this could be because a) I spent a year facing my own mortality and am dealing with the emotional aftermath that I didn't have time for while I was busily trying not to die, b) I got hacked into, had bits removed, was irradiated, poisoned, lost 15 pounds, and I have no remaining physical reserves, c) I have no estrogen, and am newly in menopause with all the emotional volatility that implies, d) the medicine I am taking to prevent a recurrence makes my joints hurt which keeps me from sleeping very well, so I am seriously overtired, or e) my joints hurt all the time, and my pectoral muscle adhered to my ribs so moving my arm hurts, and not being able to reach down and put on my own socks gets very frustrating. No matter which explanation - or combination - holds true, I am still pissed off because it is further evidence that I am not better yet, don't have control of my body yet, and because I WON, dammit. The rules are: you win, everyone cheers, and you go home and feel better. I am scared to death that even if the cancer doesn't come back - and, oh yes, I am afraid of it coming back - I am still going to hurt all the time, forever. I can accept that I had to have a mastectomy to get the cancer out, and I can accept that the reconstruction didn't work so I look very different. What I didn't anticipate, and didn't expect, was that the mastectomy site would continue to hurt and that I wouldn't get my full mobility back. Every time I reach for a coffee cup, use a paintbrush, or take a deep breath I can feel the painful stretch across my ribcage. Just a teeny, constant reminder of the cancer. But how do I stomach complaining that I hurt when my chemo-buddy, the woman who showed me the ropes, soothed my fears, and taught me about bravery and grace in the face of cancer, she died while I lived.

Clearly, I haven't put this experience behind me yet. I do know things will get better, but this transition has been difficult. I also haven't lost sight of how unbelievably lucky I continue to be - when the joint pain started we thought it was cancer in my bones. Do I wish I didn't hurt? Absolutely. Would I choose pain over death? Duh. But I still cry at nothing.

After The Walk

2008-06-01T19:46:00.006-05:00

So after two days of grueling walks, emotional drains, loving conversations and great solidarity, we are done. The team did great in getting through the walk and supporting each other through the difficult times.

Each of us has taken something away from this journey. For me, I have been able to come to terms with what has occurred and realize that we are already well into the post-cancer life. Lynn is a survivor and we are ready for the rest of our life. In many ways this experience has burned away what was left from our collective baggage and really cemented our relationship.

I look forward to our future together.

I wanted to take a moment in this, my last post, to thank all those people who have been with us through the journey. As much or as little as you have participated, you were part of our lives and/or are part of our lives and have had an impact on us that has brought us here. We are going to get back to normal--which means communicating a different way.

I also look forward to our future together whatever that may be. Be in touch, let us know how you are doing, and we'll fill you in. Call. Email. Come visit. Whatever is your mode. And be patient. We are getting our training wheels back on to communicate directly with everyone.

Avon Walk Schedule

2008-05-26T19:59:00.005-05:00

To all of Lynn's fans, here is the schedule of Lynn's whereabouts during the Avon walk next weekend (using official route map):

Saturday, May 31st (Start 7am)
09:30AM-10:30AM - 2318 W. Roscoe St (Lakeview SDA Church)
11:00AM-12:00PM - 3154 W. Foster (McDonald's Parking Lot)
12:00PM-01:00PM - Lunch at the Charcoal Delights (Crackburgers!)
01:30PM-02:30PM - North Branch Bike Train (Milwaukee/Touhy Entrance)
03:00PM-04:00PM - 6649 N. Lincoln Ave (Lou Malnati's Pizzaria)
05:00PM-?? Lynn will be picnic-ing with the walkers for dinner at Warren Park. Feel free to join us--bring your own dinner!

Sunday, June 1st (Start 7:30am)
09:00AM-10:00AM - 3700 Recreation Drive (Clock Tower/Bike Path)
10:30AM-11:30AM - NE from Clark and North (Lincoln Statue - 2200 North Stockton Drive?)
12:00PM-01:00PM - Lunch....somewhere?
03:00PM-04:00PM - Soldier Field (Closing Ceremonies)
04:00PM-?? Slow commute home to Waukegan for showers, naps and quiet time.

That's the official word. Wear your T-shirts if you got them. We will be meandering/cheering between the formal stops, but this is the best chance to see her. We will both have cell phones, so call us to coordinate. We do expect traffic delays, so if it's bad we may have to skip stops. If it's downpouring, there will probably be an alternative schedule.

Baby's First Haircut

2008-05-20T17:57:00.002-05:00

Sometime over the last few weeks, I realized that not just has my hair come back, but it has gotten messy. Messy! And a little curly - practically a Gazley first! Since next week is a big one for me - I've got my "I kicked cancer's ass" Vegas trip and the Avon walk - I want to look my best. So messy hair was right out. My mom came up for the day, and we went to the salon. Mom was there for my very first haircut, so it made sense that she would be there for this one.

I officially have a style now, rather than more or less two inches or so of hair. Amber even showed me how to make it trendy, with product. Getting a haircut felt great. It's a girly thing. A grown-up thing. A regular life thing. I looked in the mirror (once I put my glasses on) and thought, "I could teach in this, I could go out like this, I look GOOD like this!" Put a pair of earrings on, and I look like a girl instead of like my teenage brother.

Most importantly, Mom approves.

Learning (Un)Curve

2008-05-12T06:51:00.002-05:00

Zack took me out over the weekend for my first new-shape shopping experience. Cousin Sarah had left "What Not To Wear" for my general edification and enjoyment, and Zack and I carefully studied the "No Boobs" chapter in the car on the way to the store. WNTW suggests halter tops, high necklines, slash necklines, thick sweaters, and tasteful nipple display. (We disagree with nipple display on general principles. One, I don't have any. And two, nipping is rarely tasteful - go ahead and call me old fashioned on this one).

Armed with our new knowledge, we went into the store and picked up short sleeve shirts with every neckline that seemed to fit the guidelines. Our first frightening discovery was that I appear to have moved from a Medium to Extra-Small. Knit tops require a Small, though, because clinging fabric just shows off my ribcage. One of my Thai friends in Bangkok used to tell stories of her US shopping experiences, and the violence of the competition over the coveted XS merchandise. She fought dirty! With elbows! I am in deep trouble.

Zack and I treated this outing as experimental research. I would go in the dressing room, then come out and we'd discuss the merits of each neckline/shirt. Our scholarly debate seemed to amuse various store patrons, but I found (a bit to my surprise) that I just didn't feel like explaining 'I had cancer, a new body shape, etc.' I was having fun.

Overall, we proved the WNTW principles. Halter tops work in theory, as long as I don't care about the port-a-cath scar being flashed (still more tasteful than nipples). Square necks and high crew necks work well, and patterns help disguise the great plain of my chest. Cap sleeves suit well, but 3/4 sleeves emphasize the out-of-proportion chest to waist ratio. V-necks and scoop necks (my entire summer wardrobe)look really silly.

Our discoveries stretched beyond the WNTW coaching. Shirts with little pockets right where boobs go? Surprisingly in. Shirts with darts to accommodate boobs? Out. Way out. Shirts I've NEVER been able to wear - the ones with ruching at a square neck, or ruffles down the front? In. (Though we didn't purchase any. As Zack howled in front of everyone near the fitting room, "it works but it's SO UGLY!" No matter my shape, melon will never be my color.) Those evil shirts with the empire waist and the band across the front? Turns out that it wasn't my boobs that prohibited my wearing them, but my height. Without boobs to hold the shirt in place, the band rode up and sat just under my armpits like an old man's waistband. Hilariously, hugely out.

We did find one shirt that worked beautifully. I even turned a head in the fitting room. Black, mandarin collar, double buttons down the front, linen. Zack cheered when I came out in it. We high-fived at our discovery, then looked at the tags. $80, dry clean only. Sigh. Some things never change.

Absence Makes the Heart Grow Fonder

2008-05-03T15:49:00.003-05:00

I had the week away this week, which was probably a bad call given Lynn's state of health. I wanted to take a second to thank the people who took care of her in my absence. Knowing that people are available when I cannot be is a good thing.

With our appointment with Dr L this week, we are almost ready to close this chapter in our lives and move on with the future. If all goes as planned I would expect us to have our last posting after the walk. For now we have a few follow-up appointments planned which we hope are the last of their kind.

On Shirts

2008-04-27T03:29:00.005-05:00

I'm grappling with the new truth about my physical self: I don't have breasts anymore. I can put my hands against my chest and feel all of my ribs. When I looked down at my toes in the shower, the ends of my rib cage stuck out farther than any other part of me. It is too strange to be shocking, and too shocking to be scary, and too scary to be sad. I keep finding my hands stealing along my ribs, as if I could find my breasts there by accident. I look incredibly tiny now, with my little pixie hair and just my narrow ribcage. The woman who altered my wedding dress decided I must be English, because I have such big boobs and a narrow little ribcage. Had. My shirts hang straight down, now.

Even after everything I've been through this year, I never hated my breasts. Lots of women with breast cancer say they want them chopped off, or call them the evil twins, or just pour hate into them. I couldn't hate them, because they were a part of me - a visible, tangible, obvious part. Not terribly useful, and with a rotten set of instructions, but mine.

I wore my favorite shirt of all time to the hospital on Thursday. That shirt has been dancing in Chicago and New York, on summer dates with Zack, worn under jackets to work and over tight jeans to parties. It fit my curves just so, and I always felt beautiful when I wore it. It is missing a button, and the edges are frayed, and it doesn't have the same give that it used to. In fact, it has gotten pretty worn out. So, really, no-one would know but me that I look beautiful in that shirt.

I know that in a few days I'll be feeling better, and it will be time to change out of my jammies and into regular clothes. That will probably be when the strangeness starts to creep into the everyday. When nothing fits right, and my reflection in the mirror doesn't match what I imagine it should be. When I look around at other women and see curves in all the right places but don't have them myself.

I just have to remember that I know I am beautiful, even if what everyone else sees is just a ratty old shirt.

To Bed

2008-04-24T21:07:00.002-05:00

After a very long day, we have made it home and into bed. Lynn had a small bout of nausea, but is now out cold. I am hoping for a day of minor pain and major eating tomorrow combined with good bed rest. I do have to work (from home) tomorrow, so this should prove to be interesting.

Have a good night and thanks for reading.

Recovery

2008-04-24T19:22:00.003-05:00

I finally got to join Lynn in recovery. Seems she was out cold for most of the time. Nausea is minimal to none at all at this point. Pain is around a 4 (on a 0 to 10 scale) but coming down after the oxycodone. Lynn finds this to be the best pain drug around.

She is looking and feeling good, so we're going to unplug the IV, dress and go home now. Hope to be home before 8:30pm.

Post-Op Report

2008-04-24T16:55:00.002-05:00

Dr L stopped by and gave me the update. He took a different approach than he had originally planned but everything went well. He said he didn't see any obvious signs of infection. My assumption is that he wouldn't find much given how much antibiotic she's been on.

At this point we start the hour wait to see her after recovery and then hope she's ready for to go home very soon. Poor kid was starving before surgery, but anesthetic tends to shut down her hunger (in addition to making her nautious).

The drains are back in, so she will have to see him in a week or so for a follow-up and their removal. At that point it's all about follow-up visits for the next two months and then our monthy Dr B visits. Almost there....I can really taste it. I know that Lynn is ready.

Another Update

2008-04-24T16:15:00.002-05:00

The operating room called and let me know that they are just wrapping up now. Hopefully I'll see Dr L soon. This has been almost 2 hours longer than we thought. Hopefully nothing interesting popped up. I will post again after speaking with him.

Quick Update

2008-04-24T14:58:00.000-05:00

They called up saying everything was fine. Doesn't sound like she's out of surgery yet, though. More updates to come.

Last Steps

2008-04-24T13:45:00.003-05:00

"I'm so bummed." - Dr L

Yah, I guess we all hoped that this would work out, but at this point, I think we are all done (Lynn most of all) with pain, what ifs and one more things. Torn between looking "strange" and being uncomfortable, this was a hard decision for Lynn. My feeling is that if you have a choice between living in pain and not living in pain, choose the latter.

Dr H happened to be in the area this morning so we got to have a nice chat with her. We won't see her for a while, which leaves a mixed emotion. We both like her a great deal, but visits can mean not so good things. Lynn needs a doctor break---maybe we could have them all over for dinner so we could see them but not have it be a medical thing. I wonder if that is ever done.

Lynn was wheeled out at 1pm almost on the dot with the anesthetic already kicking in. Dr L says no more than 1.5 hours. Clock is now ticking.

Schedule for the Day

2008-04-24T08:33:00.003-05:00

Just so you all don't worry, unlike previous surgeries, this one is at 1pm. I will post again once I am in the waiting room (it's sort of like Cheers, without the beer, without the relaxing side....ok, it's only like Cheers in the fact that everyone knows us there).

I have a big issue with mid-day surgeries--usually you stop eating by midnight and have an early morning surgery. Lynn had the same requirements and can't eat until after the surgery. Damn the eating requirements!

Crying Uncle

2008-04-23T17:19:00.003-05:00

It's official - the implants come out tomorrow. Dr. L thinks that the infection keeps smoldering on the surface of the implant, and that the antibiotics won't touch it. We could take another week and see what happens, but I've reached the end of my tether. I am tired of being sick, and just want to move forward.

So, now I need to deal with another major alteration to my self concept, but at least it will be the last change for a while. I figure one more week in a bathrobe, mostly to accommodate the surgical drains, and then I am on to a full time healing schedule. I keep thinking I should be depressed as hell over the whole thing, but at this point I am just relieved to have an end in sight. Mirror-gazing will be pretty jarring for the next few weeks, but I'll get there.

I should be home by tomorrow night. Casseroles and company welcome! Check out my new streamlined look...

Watching and Waiting

2008-04-16T07:35:00.002-05:00

Met with Dr. L, who looked at my chest and gave a lovely Gallic shrug. It doesn't look healthy, but it isn't obviously infected. We're going to try another week of antibiotics, to a total of four weeks. I can still cry uncle at anytime and have the implants pulled, but it only hurts a little and I just don't see myself willingly doing the whole process again. "Hmmmm, would I rather go work in my garden, or go have another surgery? Would I rather spend next summer feeling whole and healthy, or sore from expander fills?"

I've also realized that I am very much looking forward to a week where I don't have to go flash a doctor. My breasts didn't get this much attention even when they were real.

Our MasterCard Moment

2008-04-12T07:55:00.003-05:00

Total Medical Bills So Far: $267,743.91
Total Write-Off: $145,799.62*
Total Insurance Payout: $106,254.61
Total Out of Pocket:$15,689.68*

Not having to pay the total medical bill actual value......priceless.

*More Write-Offs to come---the TOoP is actually much lower.

A Slow Transition

2008-04-09T19:44:00.003-05:00

This week we met with Drs S, Se and B to discuss progress (on two fronts).

Cancer:
Dr B pronounced Lynn "Cancer Free" today. Our next step is a bone density scan (in the next week or so) to be sure to have a baseline for the potential AI side effects. Our next appointment is in 3 months! Dr H is next week for a final surgery review and a (much anticipated) final stitches removal.

Cancer Free!!!!! After all this time, what we hoped for and now can rejoice in. Yes, on some level we still must be vigilant (constant vigilance!!!), but we are no longer treating cancer. We are in prevention. All that said, we are hoping that by Memorial Day we are done with everything except our pleasant and inconsequential chats with Dr B.

Infection:
At this point we are seeing some increased redness, warmth, pain and swelling in the right breast. It's minimal right now, but considering we were at none a few weeks ago we are a bit concerned. Dr Se said that he really hasn't an answer for us, but said that if it gets worse, he suggests the removal of the implant.

Dr L has been in touch, but we still need to confer with him on next steps. Lynn has switched to a milder antibiotic that handles the infection that was identified earlier. We will probably be meeting with him again in the next week or so to discuss progress and make any decisions necessary. Dr Se has another follow-up in 5 weeks.

The Final Mile (sort of)

2008-04-05T18:38:00.005-05:00

Next week is a big step. At this point we're concerned because the redness has returned to the right side. Our inclination is that regardless of the seriousness of the infection (which we think is minimal), the implants will need to be removed entirely as they provide a safe haven for it. Keep in mind that this is all occurring while Lynn is on the strongest (and fairly expensive---$2500 for a bottle of 30 without insurance) antibiotic.

The last leg of this journey (or first part at least as we will be on constant watch the rest of our lives together--see the post on normalcy for more depth on this) is staring us in the face because next week we meet with the Drs S, B and Se. Dr S will be doing a final appraisal of the surgery (Dr H will do another one the following week) and removal of last stitches. This will combine with Dr Se's opinion and determine whether the implants stay or go (after a conversation with Dr L of course). One way or another there is one more surgery in the future (new implants or implant removal) and this week will tell us which and how soon.

Dr B is going to do a final review and gets to blow the all clear whistle. Lynn will be put on her last set of meds for this journey which, all going well, will take us ten years into the future. There is a lot of observation and caution over those ten years (the majority being in the first few) which will basically focus on any signs of recurrence and drug side effects. The hope is that every three months there is nothing to report and we just have a pleasant chat with Dr B.

I am hoping really hard for that.

T-Shirts: Reminder

2008-03-27T09:48:00.001-05:00

If you would like to order a T-Shirt (information here), please get back to Jemma soon! The orders have been surprisingly low, and we want to make sure people haven't forgotten.

Evil Has a Name...

2008-03-24T12:53:00.003-05:00

Coagulase negative staphylococcus. (Da da dum!)

The hospital cultured some of the fluid Dr L swabbed from inside the pocket of my right breast (that just sounds weird) and found staph growing in the petri dish. This isn't a surprise, since staph is the most common bacteria found on the outside of our skin. The infection seems to be retreating nicely in the face of the antibiotics that I am taking, so, we aren't very worried. Just good to know for sure. So no-one panic, please, that it is a crazy MRSA flesh eater. Mine appears to be susceptible to at least two classes of antibiotics.

Lynn's Immune System: 1
CNS: 0

Home Again, Home Again!

2008-03-21T19:51:00.002-05:00

Jiggety jig!

I am thrilled to be ensconced in my very own chair, in my very own house, in my very own jammies. Zack - the hero driver - navigated us out of the hospital, north to the pharmacy, and home through the foot of snow. Many thanks to Danny next door for shoveling a path for us. We really do have the very best neighbors ever.

Only a minor insurance adventure at the pharmacy. Cigna didn't precertify the oral antibiotics, so the pharmacy wouldn't give them to us unless we pay retail ($2500). Quick calls to the discharge nurse and the amazing Dr. L. Cigna has gone home for the weekend, but LFH discharge nurse thinks she can get them to precertify the drugs on Monday. Pharmacist pulls out his hero badge and GIVES us three days of antibiotics to get us through until the certification. Zack runs out of the pharmacy with a sack full of meds, and whisks me home.

Although I was very well cared for at the hospital, and received lots of well wishes on my way out, I can hardly describe how unbelievably great it feels to be home. And, I'm wearing pants!

Path Report: Part 2

2008-03-21T16:47:00.004-05:00

Dr H called to deliver the good news. The pathology report was completely clear. The pathologist did note that there were precancerous cells in the ovaries. These cells, over time, could become cancer. What this means is that this preventative surgery actually prevented something!

Drs H and Se are calling in our medications so that we can pick them up on the way home. This would be a very good thing (thanks to them)! Lynn is waking up slowly but is already making "can we go home" noises. Things are looking promising and I would drive through what's left of the snow to get us there.

The Lynn Arises

2008-03-21T15:03:00.003-05:00

We have a stirring in the bed and the Lynn is awake! She got out of bed to go to the bathroom (walked all by herself already). I don't know if it was the cocktail that the Anesthetist did or whether it was the Inapsine, but she is fine and slept for a good 2-3 hours. Still uncertain as to whether we get home tonight--snow is still mounting.

Update: Lynn was out cold again almost immediately. Let's hope for more sleeping and healing.

Permission Granted

2008-03-21T13:42:00.002-05:00

We have the prescriptions written and permission to leave was noted on Lynn's chart. Lynn is still sleeping soundly and the snow is still falling (white-out conditions outside). I'm not sure what to do, but my choice is made for me while she sleeps. I also need to decide how to get the prescriptions filled. With the snow as it is, I might have to get her home and then go out for them again. Dr L offered to call them in, so I might take him up on that.

Home?

2008-03-21T12:03:00.002-05:00

Lynn is back in her room but is very groggy and the nausea sounds like it's beginning (we hit her with something as soon as she got here, so hopefully she's all set for a while). The snow is coming down, but doesn't look as bad as they said it would be (knock wood). Let's hope that Lynn gets on her feet to go home today, though safer is better.

In and Out

2008-03-21T10:28:00.002-05:00

Dr L came out just after 10 am or so. Everything seemed fine with nothing concerning. He is hoping to have her home today barring nausea and any issues with the infection. Hopefully she'll be in her room by noon. We are back to drains again on one side.

UPDATE: Drs L & Se stopped in. They are ok with sending her home. Dr Se will prescribe the oral antibiotic for Lynn. Follow-up appointments for both doctors in the coming weeks.

I am hoping they can all call them in for me. Easier to pick up on the way home if we can. No Lynn siting yet.

Deja Vu All Over Again

2008-03-21T08:20:00.004-05:00

Here I sit again at LFH waiting for Lynn to return. This time I got to follow Lynn into the recovery room, but after that...Ok, we know that drill. Right now Lynn is in surgery to swap out the spacer for an implant. The hope is that the surgery will clean out the area and, via the implant, cause less future irritation to the site. She should be out in an hour or so. Dr L says it's a simple procedure. The cultures all came back negative, but Dr L and Dr Se thought that this is the best next step. Oral antibiotics once we're done and potentially leaving today (again).

For those of you who have been playing along from home, let me recap the week:

Monday - Surgery at 7:30am

Dr L was in for someone else's surgery and stopped in to see Lynn. Wasn't happy with the swelling, redness and heat around the right breast.
Lynn is in surgery with Drs H and W which takes a little longer than expected but completes with no complications
Dr L confers with Dr I about the "infection" and he agrees that this is not a normal result of post-radiation.
Dr L confers with ID about issues and is getting blood tests. Schedules Lynn for an Ultrasound and Ultrasound-guided aspiration.
Lynn is released to a shared room with strong antibiotics for the infection in addition to the surgery. The swelling and redness of the infection are much less now (marked improvement which is noted as promising by all doctors.
After speaking with the head of nursing, Lynn is moved into her own room. Dr H visits and reassures us that everything went really well and from a surgery perspective she should be able to leave by tomorrow. She assumes that the infection will keep us here longer.
Lynn and I both spend the night int he hospital. The nausea is not great, but the pain is minimal. We both get at least 5 hours of sleep which is great for Lynn.

Tuesday - Ultrasound, Aspiration at 12:00 PM

Blood draws most of the day to monitor status of infection and surgery. BP low but slowly rising.
Drs H and L stop in to confirm another night of stay but that all in all everything is looking good from surgery and infection aspects. ID doctor to visit later.
Dr I stopped by to confirm that everything looked much better.
Lynn is brought in to Radiology and they aspirate a good deal of fluid which is sent to ID for analysis.
Lynn is eating better, but nothing interesting yet.
Dr Se visits to review Lynn's case. He needs more conclusive evidence from the culture on how to proceed. He wants to get the best antibiotic for the infection he can and will base it on the culture. He is concerned that the spacer will need to be removed.
Lynn sleeps on and off during the day. The nausea is nearly gone, but eating remains uninteresting
Dr B stopped by to visit. She also agrees that the surgery was great news and is waiting for the path for final confirmation
I sleep at home and Lynn spends the night in the hospital.

Wednesday - Awaiting culture results and next steps

Lynn has a rough night which results in a much higher level of care and attention
Dr L stopped in and is happy with the improvement around the infection
Dr H stopped by to review and says that if it was just surgery, Lynn would be going home. The path report on the washings is negative which is great news.
Dr L has Radiology install a PICC line (a more permanent IV) at 9:15 AM so that Lynn can take home IV antibiotics. Side benefit of no more sticks with a needle.
Dr Se stops in and confirms nothing from culture
I sleep at home and Lynn spends the night at the hospital. We both sleep much better.

Thursday

I go to work after stopping in at the hospital. Gab takes the morning shift (thanks Gab!)
Dr L stopped by to let Lynn know that he wants her out as soon as possible.
ID confirms culture negative, but suggests removal of implant
Dr L and Dr Se confer and agree to a morning surgery to clean the area and swap the spacer for an implant. The hope is that doing so will remove any remaining bacteria fluid and reduce irritation from the spacer. Implants have no edges to rub against the skin.
I sleep at home and Lynn spends the night at the hospital. Lynn sleeps great, but I don't sleep well at all. I arrive at the hospital at 5:30 am for the day.

Going Walkies

2008-03-20T15:00:00.003-05:00

I took myself for a quick walk around the floor this afternoon, and realized a few things:

Top ten signs you've spent too long in the hospital

1) You can say hello to most of the nurses by name.
2) Staff wave, call you by name, and wonder whether you are "having nice walkies?"
3) You forget you aren't wearing pants
4) Staff point you out as you go by to other patients as "that cute little cancer girl"
5) Jello, or no Jello? Serious deliberation
6) Staff start asking you real questions: "does the cancer hurt? was chemotherapy hard? you are so young, does your mom worry?" (everyone asks about your mom)
7) You run out of veins.
8) The routine begins to make sense.
9) Doctors forget why you were originally admitted.
10) Coming back to the room, you look for your housekeys to open the door.

No News is Good News?

2008-03-20T09:36:00.001-05:00

Not much to report today. The infection is still contained and Dr L still wants Lynn out of the hopsital as much as we do. There is no growth on the cultures and no final path report as of yet. We hope that the infection can be resolved without any other impact to Lynn.

The Joys of Responsibility

2008-03-19T13:32:00.005-05:00

The head of nursing came by this afternoon and was really great. Seems that our hospital is having an influx of new patients and nurses from another hospital and it's causing major issues. She said that she would insure that Lynn had her personal staff taking care of her tonight. Needless to say, between that and the PICC line, tonight should be better.

Dr Se also stopped by and said the lab really has nothing. They are concerned about the infection and there is now a high probability that the spacer will have to come out. The big hope is that the implants will then go in, but the first priority is Lynn's health. Looks like we are here overnight again and we'll see what happens tomorrow.

I will be going to work tomorrow as I've been neglecting it a bit too much while here (not that I feel even remotely guilty about it--let's get the priorities straight, right?). Thanks to those on stand-by for hospital shifts. Lynn will love the company and I will feel better with someone here. I will be stopping by in the morning on my way to work and in the evening on my way home.

Next Steps

2008-03-19T11:03:00.003-05:00

At 9:15 we got a PICC line installed which means that Lynn can do IV drugs at home. This brings us closer to a potential leaving of the hospital (what everyone wanted in the first place). The ID doctor who showed up said that they are not seeing any growth in the cultures (unsure whether it's a slow growing bacteria or whether we have no bacteria in the culture at all). We should be meeting with a home nurse about how to use/maintain the line.

At this point Lynn is up and roaming and we're going for a walk soon. Cross all fingers and toes for leaving. Lunch is next and we're hoping for more food down.

The Bear(er) of Good News

2008-03-19T08:29:00.003-05:00

If there is a person out there that can stand in for me in taking care of Lynn (read: kick the crap out of people who mistreat Lynn), it is Dr H. She has already "laid into" people on her behalf and has been a very strong advocate for her. Thanks, Dr H! I will still be talking to the head nurse, but battle one is complete.

She shared some good news on her way out. Part 1 (the washings) of the path report has come back negative. This means that there is no free floating cancer cells (even microscopic) in the abdomen. This is great news! We still need the full report to celebrate, but there is a huge collective sigh of relief here.

The Wrath of Zack

2008-03-19T07:29:00.003-05:00

There are few things that will actually get me angry. Not treating Lynn like she is the most important thing ever I can let go, but not treating her like a human being I can not.

So I got to the hospital at 6:30 am and Lynn was beside herself. It seems she slept very little because the nurses were constantly trying to fix the IV line. They actually had to move the line because of an occlusion which meant many more sticks because they just couldn't seem to get a vessel. Needless to say, the service last night was terrible at best (that is more a comment on how they administered versus a comment on their competence). I am going to have a conversation with my favorite head nurse today.

Dr L stopped by to check on her. He thinks things look better, but is waiting to see what Dr Se has to say about the infection. Everyone is waiting for the lab results. They may put in a PICC line just in case there is an IV antibiotics. Right now we are waiting for the blood results too as her hemaglobin is low.

I just want to get her home.

End of a Long Day

2008-03-18T19:50:00.002-05:00

We spent most of the remainder of the day just hanging out and Lynn actually got an hour of sleep in which did much good. The feeling is that basically Lynn will be doing fairly well by morning and we'll just be waiting for the next steps in how we're going to tackle this infection.

Dr B stopped by to check in. She mirrored the positive outlook of the surgery that Drs H and W felt as well. This is a good sign. As before, we will wait for the pathology results before any celebration begins.

After much contemplation, I decided that it was best for both of us if I went home and got some good sleep in my own bed. It's an interesting feeling to know that your loved one is alone in a hospital room without you and you are home without her. Knowing it for the best in the mind does not agree for what might be best for the heart. Needless to say we both have the phones by the bed. If I don't sleep well, I'll just get up, shower and head to the hospital.

Too Much, Too Soon

2008-03-18T14:37:00.003-05:00

Late this morning, Lynn began the process of getting out of the bed and doing things like washing her face and brushing her teeth. They changed the bedding and were about to get her back into a much needed bed when the wheel chair for the ultrasound came around.

We wheeled down there and then sat in the hall waited for the techs to be ready for us. When we got into the room, they went through the process of seeing if there were any fluid pockets (there were). The doctor came in (Dr Sy) to aspirate the fluid to send it to the lab.

When we got back at 1:45, Lynn was cooked. We settled her back into bed and managed getting some food down (mostly jello, juice and tea) and then Dr Se (head of infectious disease area we found out later) stopped by to check in on Lynn and get up to speed. He was definitely the antithesis of House MD when it came to bedside manner.

The skinny of all this is that we hope it's something minimal so that we can get to pill form antibiotic and go home. The next stages in order of best to least is: 1) IV antibiotic, no surgery, 2) IV antibiotic, surgery to replace spacer with implant, 3) IV AB w/ surgery to remove spacer completely.

For now we hope for the best and get Lynn some sleep. I am trying to convince myself that sleeping at home tonight is really best for everyone. Is it really 3:45? *Yawn*

Parade of Doctors

2008-03-18T09:58:00.004-05:00

Dr I swung by this morning after Dr L came by. He said the area looks much better (and that Lynn generally looked better (he said the last he saw her, in recovery, she looked like a "train wreck"). Glad to see everyone is on the same page.

Mid-Morning Report

2008-03-18T09:40:00.002-05:00

Drs H and L stopped by this morning and the consensus is that we have another night in the hospital ahead of us. Dr H repeated that everything looked good and that she doesn't expect anything to come out of the path report (we should get this by Friday). Dr L says that the infection has definitely come down and is even wondering whether there is any pooling at all.

We are still scheduled for an ultrasound around noon to determine if there is any fluid. A doctor from the infectious disease area is going to check on Lynn this morning as well as coordinate with Dr L about treatment. If everything goes well, we go home tomorrow with oral antibiotics (in addition to the other medication) and call it done.

We're both exhausted. I think it's time to be done. After a few weeks we'll see where we are, but we're very close.

Top o' the Mornin' to Ya

2008-03-18T05:53:00.002-05:00

Ok, so that should have been yesterday's title, but better late than never.

Lynn slept well last night which is great news! The blood pressure is a bit low this morning, but they don't seem as concerned as yesterday. They took more blood to monitor the infection this morning (we expect to see the infectious disease guy this morning). Dr L came by late last night to check in and give us the full scoop (not too much more than we already knew). The big hope is that we don't need to remove anything (or if we do, that we can just swap in the implant and then be done with it.

The pain level is ok, but after a good sleep she has not been able to administer her pain medication. That is being rectified now and we are settling into our day. We have an appointment at noon to get an ultrasound of the radiated area to see if the infection is pooling at all. If it is, then they will aspirate the area and analyze the sample.

Thankfully I am "working from home" today and tomorrow. I hope to have Lynn home by tomorrow.

End of Day 1

2008-03-17T21:01:00.004-05:00

Calling it a night. Nausea is keeping Lynn awake. 8 mg of Zofran later and still nausea. I think she's just going to have to ride it out. That's gotta suck on top of abdominal work, but she says the pain is not too bad (has been between 2-4 on the hospital 10 scale since surgery). They need to find a way to remove the nausea side effects of anesthesia. Like now.

More tomorrow--Have a good night everyone.

Dinner and a Movie

2008-03-17T17:28:00.002-05:00

We are now nicely settled in the room. The nurse was nice enough to suggest I take part in Lynn's meal. So it's a sandwich, soup, jello and herbal tea. I will probably try and take off after the doctor swings by, but perhaps after dinner instead. Lynn is doing much better. Still a bit groggy and some nausea but that's why there are drugs.

Dr H just stopped by and said to expect two nights in the hospital. She also reiterated that everything went really well and that the big focus beyond healing after the surgery is the antibiotics and the inflammation on the right side. Dr L is now playing point on that.

Special Note: If you ever find yourself caring for someone at a hospital, always find out who the head nurse is and make sure they know who you are. There is no one better to have at your side when you need something than them.

Bubonic Plague

2008-03-17T14:30:00.004-05:00

I have tracked down Lynn. She is doing well, but very groggy. She's had some slight nausea which we are hoping goes away fairly soon. The one interesting thing is that she's currently sharing a room. The women in the same room seems to have some sort of lung issue as she's coughing regularly. She says it's not contagious which makes me think of lung cancer. Sigh.

We are in room 1060 for now, but I expect that to change. Looks like we are definitely here one night.

UPDATE: It pays to remember people. The head nurse moved Lynn to a private room (1065) for the night. It was the last room they had so I'm glad I asked.

Pain Management

2008-03-17T12:48:00.004-05:00

Still have not seen Lynn. The volunteer here called and they said she is still in "pain management". What kind of place is that? That worry that had so quickly dissipated is now back. The white horse is stamping his feet in the stable. I'm going to see if I can reach a doc to explain to me these complex terms of theirs.

UPDATE: She has been moved to a room (shared room) but the "pain is under control". I should be allowed to see her momentarily (some report has to be filed). Powering things down to go see her.

What the...? (Part 2)

2008-03-17T12:07:00.002-05:00

Dr I just swung by and gave me an update. He has confirmed that it is definitely an infection. His hope is that it's just a pocket (as Lynn has not been feverish at all) that can be aspirated and also hammered with antibiotics. The big hope here is that this can be contained without having to remove the spacer on that side.

Final Surgery Update

2008-03-17T11:42:00.004-05:00

Drs H and W came in to talk with me just now. They said that from their end everything looked good. They took their time to be sure that everything went well and didn't have to make any other incisions. Their consensus was that Lynn showed no signs of any other cancers in that area (the "wash" path report will confirm that there is indeed none).

They also expressed concern about the radiation area. Looks like she should be out by tomorrow morning sometime, but that the secondary infection might keep her in for another day. Drs H and I will be visiting later today to check up on Lynn. I will send an update out once we are in a room.

What the...???

2008-03-17T11:28:00.002-05:00

Dr L came out to chat with us about Lynn (yes, he was only supposed to visit today, but this is Dr L, so...). He said he spoke with Drs I, H and W about Lynn and he's concerned about her. The irritation on the right side that we thought was just residuals of the radiation might actually be an infection. He is going to make sure she gets antibiotics and he thinks she is here overnight at least.

He is hoping that with antibiotics that the infection can be contained (if it is indeed one). I got the impression that his concern is not just about infection and fluid pocketing related to it but also about having to remove the implant on that side completely. I hope that this ends up being nothing. Possible ultrasound tomorrow to check for fluid.

Still no word on Lynn or on Dr H about how things went with the surgery, but I will update when I can.

Quick Update

2008-03-17T10:45:00.001-05:00

Service desk called and said everything is fine and the doctor will be up to see us momentarily. YAY!

Time Keeps on Tickin....

2008-03-17T10:09:00.002-05:00

It's a bit after 10 and still no word yet from the doctors. Makes me nervous. Could be nothing. Could be a whole lot. Sigh. Worried about her. I am just fretting in my out loud voice again. It's only 10 minutes.

Deja Vu

2008-03-17T08:27:00.002-05:00

Here I sit again at LFH waiting for Lynn to return. This time I got to follow Lynn into the recovery room, but after that they kicked me out. Finally got to meet Dr H. (yes, after all we've been through, the person who started us down this path--better late than never).

You have all the details. Suffice it to say, we're both tired and are hopeful for a simple surgery with negative pathology results so that we can begin down the final road of full recovery. Dr H says she'll be out to see me by 10am. I guess the recovery time is longest.

The Breach, Again

2008-03-16T15:44:00.002-05:00

Zack and I are returned from our very rejuvenating vacation in New York. We're still digesting all of our NYC faves (pizza, Chinese, bagels, pretzels, pastrami, and, of course, a black and white cookie). We saw theater, movies, and museums - we are so full of culture we could be yogurt. Our very favorite moment: during the curtain call for Patrick Stewart in Macbeth (just as fantastic as it sounds), a guy to our left yelled "Bravo, Captain Picard!" Yay, trekkies!

So, here we are now at the watershed moment. Tomorrow will either be the first day of the pure prevention phase of my recovery, or it will be the first day of treatment for a new kind of cancer. I'm daunted by both options. On the one hand, I've gotten so used to being a full time patient that it will be strange to start making other sorts of plans. Sortof like being a Chicagoan in February - intrigued by the idea of spring, but skeptical that it could ever really happen. On the other hand, holy crap. Chemo, again. Radiation, again. Bucket day, again. Bald, again.

The craziest part, though, is that whichever way tomorrow goes, I know we can make it. We've got each other, our families, our friends, and a great medical team.

Zack will bring a computer tomorrow, and plans to post once I am out of surgery. If all goes well, I'll be home tomorrow night. For tonight, Zack and I are going out to dinner and celebrating. A little Italian, a little vino, a little fantasizing about the summer...nothing of consequence. Hey, we're still on vacation!

Team Lynn T-Shirts!

2008-03-07T18:16:00.007-06:00

Below is a post from Jemma regarding T-Shirts:

I have pasted the designs (front and back) below, if people want to see it.

Front/Back

People who want shirts need to know the following:

Cost: $20 - all proceeds to benefit Team Lynn
Sizes: Women's Babydoll XS-2X, Men's T shirts S-3X,
Sorry no itty-bitty people's shirts - although one could always cut and sew!
Shirts are 100% cotton

Ordering Information:

Orders need to be pre-paid. Checks should be made out to Jemma Levy, not the Avon Walk.
Orders can be mailed to me at home or dropped off*
Orders should include name of the purchaser, phone or e-mail contact (so I can tell them when to pick the shirts up), the check, the number of shirts, gender, and sizes. Shirts can be picked up at my house. If they need to be mailed, other arrangements can be made to pay for shipping.
All orders must be received by March 28.

* If you need Jemma's address, please contact someone from the blog for that information. We will be out of town through the 17th, so if you would like the information from us, please email me (Zack--Not Lynn who will be preoccupied) and I will send it to you upon our return.

Special thanks to our fabulous artist, Penny Hauffe. Visit her other work at www.pennypaint.com

Left Field

2008-03-06T13:58:00.002-06:00

Met with Dr W today (gynecological oncologist). Very sweet gentleman. He referred to my demographic as "ladies". Going into the appointment, Zack and I most wanted to understand a) what the heck is going on, b) what piece of the procedure moved from a laparoscopic surgery to an open surgery and c) is that piece of the procedure worth the additional recovery time and muscle damage.

Turns out, the only part of the procedure that cannot be done laparoscopically would be removing the omentum (a fatty layer over the colon). The omentum tends to be a common site for ovarian cancer to spread. Zack and I decided that since I would only need to have the omentum removed IF they discover ovarian cancer, we could put off that procedure. So we are back to a laparoscopic, day surgery. Drs H & W will remove my ovaries, fallopian tubes, and uterus, and do a series of washes of the peritoneum. Pathologists will then test the organs and the collected fluid for cancerous cells.

Here's where we veer into left field. Our entire assumption of why we are doing this surgery was - well, not off base, exactly, but missing a key component. Up to now, we thought we were doing the oophorectomy to remove the major source of estrogen in order to keep from feeding any colonists from the breast cancer. That remains true. In addition, though, my BRCA2 mutation carries an almost 50% risk of ovarian cancer, and a small risk of peritoneal cancer. So, what Dr W will REALLY be looking for next week is a brand new primary cancer. And, unfortunately, the chemotherapy agents effective against breast cancer don't usually work against ovarian cancer, so it could have been lurking for a while. Given my history, if they find anything even remotely funky, we'll be right back to the beginning. Scans, chemo, radiation, and surgeries.

Strangely, we aren't despairing over this news. I think we are so excited about being able to negotiate back to laparoscopic surgery that we haven't quite processed the other piece. It was definitely an "informed patient" moment. We also are living in such a left field world right now that new, bizarre risks feel pretty inevitable. Right now, the surgery is tentatively scheduled for Monday, March 17 (the day after we return from our vacation in New York).

Another Day, Another New Wrinkle

2008-03-04T16:19:00.002-06:00

So, I got a call from Dr. H today. She's been conferring with a gynecological oncologist (Dr. W) about my case. Turns out, in people with my particular combination of genetics and aggressive cancer, a slightly more complicated surgery is necessary. I'll get more details on Thursday, when I meet with Dr. W. (The advantage to being an 'extremely high risk' case is that docs find time for you.) What we know now, though, is that the surgery will have to be abdominal instead of laproscopic and that my uterus is on the chopping block along with my ovaries.

I'm pretty unhappy about the whole thing. I'd rather not have an abdominal incision - recovery is much harder, and, well, to be honest, I'd rather not gain any more big scars. Not that I intend on showing up in a bikini anytime soon, but still. I'm also disappointed that yet another of my organs has turned into a dangerous sleeper agent that must be removed for my safety. And the timing, frankly, sucks. I'd intended this to be a time of healing and celebrating. Instead, I'm feeling sucker punched.

More details Thursday.

Surgery Details

2008-02-29T07:31:00.002-06:00

Met with Dr. H yesterday about the next round of surgery. She says it is a very straightforward laproscopic procedure, so the recovery time (pain and movement-wise) should be quite short. She did warn that, particularly with everything else I have been through, I will probably need a good month to recover from the surgical fatigue. More - ahem - exciting will be the instant onset of full-blown menopause. I got a taste of it while on chemotherapy, but the surgery will bring on the real deal. I am not looking forward to it by any means, but it has got to be better than chemo.

Dr. H will coordinate with Dr. B to make sure there isn't anything else she needs to do while we're in there, then get the procedure scheduled for the next few weeks. In some ways, I feel like a car. "Hey, Cooter, ya wanna throw in a new valve cover gasket while you're in there? Save me the price of the labor in 20,000 miles..."

So, to sum up: outpatient surgery, fully anesthetized, laproscopic, month of recovery.

From Treatment to Prevention

2008-02-27T16:31:00.003-06:00

The appointment went well. The team at Dr. B's office oohed and aahed over my new hair, and were - of course - thrilled to see Zack. I even got to see my chemo-buddy, which was an extra treat. Dr. B says my radiation burns don't look fabulous, but are within the bounds of normal so not to worry.

Surgery:
No major surprises, just some tweaks. The surgery to remove my ovaries needs to happen ASAP, rather than in May as I'd planned. So, we're trying to get it scheduled for the week after we return from vacation. On the positive side, Dr. H can probably do the surgery. Zack is excited to meet her, as he credits her with saving my life. By working her personal contacts, Dr. H bustled me into the offices of Dr. S and Dr. B within a few days of my visit with her. Without her direct intervention, that process could easily have taken a month. A month, it turns out, I didn't have.

Drugs:
I start Tamoxifen tomorrow. I'll take it until the surgery, then switch to an aromatase inhibitor. I also start calcium & vitamin D supplements, since both early menopause and the AIs tend to increase bone loss. So, osteoporosis is the newest item on the list of things to worry about. I figure this gives me all the justification I need to eat Cabot's cheese by the brick and drink lattes all morning. There's calcium in butter, right?

Monitoring:
I'll have checkups every three months to check for any possible cancer recurrence. Any new tumors would be most likely to grow in my bones, liver, chest wall, or lymph nodes. Although the evidence is mixed on their utility, Dr. B and I decided to go ahead and test for blood borne tumor markers. The problem is, the tumor markers often spike without the doctors being able to find an actual tumor anywhere. However, a tumor marker spike does throw up a red flag, and in the best case scenario this could give Dr. B a three month head start finding for a new cancer. Based on the incredible growth rate of the first cancer, Dr. B wants every time advantage she can get, as long as I am willing to live with the potential for unnecessary anxiety that false positive results could bring. (we are.)

Other than that, Dr. B wants to do symptom-triggered scans, rather than have me do CTs every three months. She feels that I will pay close enough attention to know when something feels strange, and she'll do careful checks whenever I see her. She'll use regular bloodwork to check up on liver function and my other organs.

Summary:
We're living in a coin toss world. Think tails!

Nerves and News

2008-02-27T08:42:00.002-06:00

So, we leave in a few minutes for my post-radiation "so now what" appointment with my oncologist (the much praised Dr B). Before I came down, I found myself dithering about lipstick, and what to wear. I even tried to brush my hair. (For the record, half an inch is still too short to brush...or even to do that brush it all forward and make the front stand up hairstyle that has been popular among my students. The male ones.) I caught myself doing my nervous routine and laughed. Do I think my prognosis will be better if I look better? That I can somehow get out of the next steps if I just look healthy enough? Ah well, we all need these reminders that human logic doesn't always correspond to cold logic.

Old Friends, New Friends, Good Friends, True Friends

2008-02-19T07:22:00.002-06:00

I've finally finished radiation! Although, according to Dr. I, I've 'hit the peak' of the side effects - explaining the splitting, bleeding skin - it should clear up in a week or so. Beyond some strangely placed freckles, some redness, and the bleeding, I'm just plain tired. However, all of this is easily fixed with some quiet time. Emotionally, I am ecstatic to be finished, and am busy reveling in the huge luxury of two whole weeks without a doctor's appointment.

Speaking of revels, the party this weekend was completely, totally, and utterly wonderful. Zack and I had a thoroughly marvelous time. In my favorite moment, I walked into the back room (the room everyone painted for me at the beginning of this saga) and realized that instead of separating into clusters by type (school friends in one corner, Chicago friends in another), people had moved all the chairs and couches into a big circle and were talking together. That could, of course, have a little to do with the incredible food that people had brought and placed on the coffee tables in that part of the room, but I like to think that such great people just naturally gravitate toward each other.

Countdown...5

2008-02-11T11:52:00.000-06:00

Five more days of radiation! One small handful of active treatments left and I am graduated to pure prevention activity.

So, of course, the only appropriate response is to THROW A PARTY!

Here's the link for the address & such.

We're opening our doors at 10am for those who'd like to help prep/cook/etc. It's an all day, open house affair, so drop in anytime. Champagne corks pop at noon, if you'd like to be here for the official toasts. Pass the invite on to anyone who might like to participate, anyone you'd like to bring, etc. Families welcome - we'll prep the upstairs bedroom for naptime, just in case.

See you Saturday!

Welcome New (Old) Friends

2008-02-07T10:35:00.000-06:00

Jemma asked Amherst College, my alma mater, to send a message to my esteemed Class of '94 letting them know about Team Lynn. She/we've received lots of responses, and have forwarded on this blog address. So, I'd like to take a minute and welcome new visitors.

When Jemma mentioned the message from Amherst, I didn't really track it. (And, I secretly suspected that no-one would really remember me.) Since the note has gone out, I have been overwhelmed with the good wishes and generosity of old friends and classmates. It is trite, I know, but gifts of fondness have truly been the best boost to my recovery. I've said it many times in this forum, but it bears repeating. Every email, phone call, card, visit, letter, or package, gets me through another day of fighting cancer, because it gives me a reason to fight. I am loved, and needed, and missed, and therefore, I will get better. So please don't hesitate, and don't worry about saying/doing/writing the right thing.

Thanks to all the Lord and Lady Jeffs who've responded. Welcome to the blog.

Team Lynn T-Shirts

2008-02-05T14:18:00.000-06:00

Team Lynn has gained in popularity. It is awe inspiring, yet not surprising, to see the outpouring of support for Lynn in relationship to this charity. Team Lynn is investigating T-Shirts for support of the walk, but basically because it's cool to have one. There is a voting section to the left which allows you to choose a number of shirts you'd be interested in. We are closing the poll on 2/12, so please vote sooner rather than later. If we get a large enough number we'll go ahead--details will be posted here.

Thanks again to everyone for showing Lynn how much she means to the world. We all knew it, but it's high time she did too!

Blog Party

2008-01-29T10:06:00.001-06:00

February 15th is the last day of Lynn's radiation! To celebrate, you are cordially invited to a blog party. For all of you local lurkers and posters, we've decided to use this celebration as an excuse to host a party so that the names you see below the comments can be placed with faces.

We know that there are people who are not local who cannot make it and as much as we would love a huge party with everyone from everywhere, we know it's not feasible. So those of you who are long distance, please forgive us for excluding you.

That said, this pot-luck scenario will be on Saturday, 2/16/2008. We will open our doors at 10am CST and close them again at 4pm. This allows those with small children to plan around naps. It also means that we can cook for six hours straight (for those of us cooking on the spot). If you need oven time, book ahead as we only have one and it will most likely be in use the whole time.

Please comment on the blog that you can attend, when you are coming, who is coming with you and what you are bringing. Please plan on bringing enough food for six people along with associated serving dishes utensils. We will handle plates, cups and utensils.

If you have any questions, please email me directly and I can coordinate.

Yay party!

I'm a Mascot!

2008-01-24T15:58:00.000-06:00

Frequent posters Jemma and Jo-Ellen, and beloved lurker Cousin Martha, have asked me to be their mascot for the Avon Breast Cancer Walk on May 31-June 1 in Chicago. They invite all of you Chronicles readers to join them, support them, and cheer them on as they undertake this incredible feat. Please take a second to check out their Team Lynn website:

Avon Breast Cancer Walk: Lynn

Many of you have heard me say that one of the things that gets me through this experience is my bargain with God, the Goddess, or whatever higher power might be listening: I will have breast cancer, but spare my loved ones. Let me take this one for the team - my brother, sister, cousins, nieces, nephews, mother, aunt, friends, colleagues. But please, please, protect the people I love.

The money Team Lynn raises will be used to provide mammograms to women without regular access. I am deeply honored that Jemma, Jo-Ellen, and Martha have taken on such an audacious undertaking to save lives in my name.

The Worryphoon

2008-01-23T19:04:00.000-06:00

Just a reminder, gentle reader, that sometimes you have to step back, breathe and get a new perspective. It's going to be ok.

Next Steps

2008-01-16T17:47:00.000-06:00

At this point, we have received two opinions on appropriate next treatment steps. The oncologist at Rush suggested we investigate a clinical trial happening at University of Indiana at Bloomington. The trial tests whether additional chemo helps patients in my situation. At this point, we are disinclined to participate in the trial (mostly because I find myself hoping to be in the placebo group, and it doesn't really work that way).

The second oncologist - from Northwestern - absolutely felt more chemo wouldn't be appropriate. However, Dr. C had a few surprises. Her opening remark was 'we need to discuss having your ovaries removed as soon as possible'. This came out of left field for us - all previous discussions had supported the idea that I could have them removed at age 40.

Dr. C's logic was this:

- I have an estrogen-receptor positive cancer, which means estrogen will encourage any remaining cancer cells in my system to grow, divide, and become new cancers.

- Because I had cancer in 10 lymph nodes (a lot, according to Dr. C), and estrogen-receptor positive cancer resists chemotherapy, I absolutely positively have lots of circulating cancer left.

- Therefore, I need to do everything possible to discourage those cells, which means cutting out as much estrogen as possible.

- Women produce estrogen in two ways. First, through the ovaries. Second, through a compound released by the adrenal gland which the enzyme aromatase transforms into estrogen.

- There are two types of hormonal therapy drugs designed to interrupt the body's estrogen pathways: tamoxifen and aromatase inhibitors (such as letrozole). Pre-menopausal women can only take tamoxifen (which carries a risk of endometrial cancer and heart problems). Post-menopausal women can take letrozole (which doesn't carry additional cancer risk, but does increase bone loss). In head-to-head trials with tamoxifen, letrozole delayed additional cancers longer than tamoxifen.

- So, if I need to cut out as much estrogen as possible from my body in order to keep the cancer from growing, and letrozole is a better drug, then the best thing to do is to remove the ovaries in order to 1) remove the first source of estrogen and 2) make me post-menopausal so I can take an aromatase inhibitor to block the secondary pathway.

Dr C talked a lot about my being extremely high risk. She said that at this point, I am extremely high risk, but(blah blah blah) taking tamoxifen would cut that risk in half. However,(blah blah blah) at that point I would still be at extremely high risk. Doing the surgery, and taking the letrozole would cut my risk further, but (blah blah blah) I would still be considered extremely high risk. At this point I got a little frustrated (how does extremely high divided by two minus some more equal extremely high?). So, I asked if she could give me some concrete idea of what that risk might be. Unfortunately, according to Dr. C, because I did the chemotherapy before the surgery, all the methods of calculating risk don't apply. So I said, "look, I am going to fight hard no matter what, but I just want to know how hard a fight I am facing." Dr. C paused, looked me right in the eyes, and said, "you're going to have to fight really hard". We realized in that moment that Dr. C wasn't really talking about cancer risk. She was talking about death.

Zack and I have discovered our conversation with Dr. C reoriented our thinking about the immediate future in several ways. Not having children is no longer about my (in)ability to have them, but rather that carrying a child (with the hormones that would involve) could kill me. Hormonal therapy will reduce my risk of more cancer, but that is in many ways a proxy measure for mortality - the next cancer, wherever it strikes, will probably be much more dangerous than this one. At various times over the last six months, we have had to grapple with the huge changes to our future that this cancer has brought: memory problems that could inhibit my ability to finish my dissertation, numbness in my hands that make day-to-day activities more difficult, ovary difficulties that make having a child unlikely, the screening and monitoring that I will need that make living in areas with good oncology centers important, the absolute dire necessity of health insurance.

What we haven't really dealt with are the possible changes to the horizon of our time together. I used to joke with Zack that he had to lose weight so that he didn't have a heart attack at 55 and leave me alone to be the crazy old cat lady down the street. We celebrate the seventh anniversary of our first date this weekend - another twenty years together is beginning to sound miraculous. Not that I don't fully intend to make it that long - I haven't given up, nor will I spend the rest of my life declaring that I could die any minute. But it will take beating some pretty steep odds to get there, and sometimes, despite our best, most superhuman efforts, we lose.

We are starting to find our way toward laughing about it. Or at least toward gallows humor. It started with a question: "What changes do you make if you only have a short time together?" Answer: "Never fly coach". We started throwing things back and forth: "Buy the good stuff". "Find something to enjoy every day". "Go to Australia". "Make sure there is something to look forward to every tomorrow". "Celebrate everything".

So please join us in celebrating 2008. Go top shelf.

That Fleeting Thing Called Reality

2008-01-13T21:38:00.000-06:00

I had a trip away from home again this past week. Over dinner with a coworker, she related how one of her team members quit his job after his wife passed away from breast cancer. She was in her 50's.

I've gone through this whole experience without truly considering the fact that Lynn could (and still can) die from this disease. Granted, I don't want to obsess on this fact nor to I want to be anything other than optimistic. I have to be optimistic.

But just grappling with that fact for real....the real reality, was hard. I don't feel that I've taken Lynn for granted and I don't think I've yet to stumble in supporting her in what she's going through (A fact that is amazing to me, given my propensity to get distracted), but I still feel that in not letting this point be part of my reality, I might have diminished, somehow, her experience.

The fact is, Lynn can still die of this disease. In the face of that fact, I am still optimistic and will support Lynn through each and every next step. They say that fearlessness is acting without experiencing fear and that courageousness is experiencing the fear and yet still acting. I am in awe of Lynn's courage.

Demented Bees

2008-01-09T12:42:00.001-06:00

Radiation was quite an adventure yesterday. The short version: post-holiday clogs and computer glitches put the RadOnc office two hours behind. Eventually, I had my first treatment, which sounds like a hive of demented bees. Everything looks fine.

The long version: After 90 minutes of Fox News in the outer waiting room, I was brought into the inner waiting room. The inner room is only for patients, where we all sport our super-fashionable hospital gowns. Sarah1 came to fetch me, and brought me back to the treatment room, where we were joined by Sarah2 and Angela-the-student. I lay down on the table, where they promptly pulled my gown down to my waist(worn with the opening to the back, to 'preserve my dignity'). At last week's visit, they made a hard mold of me from the top of my shoulders up. The Sarahs maneuvered me into my mold, pulling my arms up and over my head and wrapping my hands around a T-bar. My pecs still haven't quite stretched out after the surgery, and last week doing the CT scan, I tore some of the internal stitches holding my pecs to the 'skin pouch' Dr. L put into my right breast. Unfortunately, all that means holding the position the Sarahs wanted was awfully uncomfortable. At this visit, the Sarahs took several X-Rays to make sure my actual body matched up with the CT scan from last week. They had computer problems, and kept coming in and out trying to solve them. I finally gave in after about 15 minutes and asked if I could put my arms down for a minute. Sarah2 said, 'Sure! But you'll have to start all over again.' I started reciting the "O for a muse of fire..." speech to keep myself distracted (thanks, Peter!). Finally, they had the X-Rays they needed, Dr. I approved them, and I was good to go. Except they needed to tattoo small locating dots at various places on my chest, so I had to keep my arms in place...but first, I got a break. I've never been more relieved to curl up into a fetal position.

So, I understand technical difficulties, and I understand scheduling snafus. What makes me crazy, though, is the 'furniture attitude' of the techs. Five different techs went in and out of my room, where I was lying half naked, blind without my glasses, hurting and freezing cold. None of them bothered to talk to me, to let me know what was going on, or to acknowledge my presence. If two techs entered together, they muttered to each other, without including me in the conversation. Treat me like a human being, please. I make a rotten chair.

To be fair, Dr I pulled me into his office after the whole thing to check me over, and to 'personally apologize' for the wait. I shrugged in response (the compromise between understanding, and being angry over the techs' treatment of me). Dr I said, 'look, you've been through enough already. You don't need this shit'.

He is absolutely right. I don't.

New Things in the New Year

2008-01-04T11:01:00.000-06:00

The first project for 2008 is to clean up the local cancer, and regain my mobility after surgery. I happily report that the numbness in my fingers and toes has started to recede, and my family has commented that I seem to be thinking faster. And I have hair! And eyebrows! Still, I have to be careful, as my mental stamina has begun to outstrip my physical stamina. For example, I imagined I was ready to cook, so, thinking I would start simple, decided to do a baked chicken, salad, and roasted root veggies. Unfortunately, I didn't really think the whole thing though paying attention to pectoral muscle use. Peeling potatoes - pecs, yes. Cutting up hard veggies - pecs, yes. Lifting pot with chicken and veggies - pecs, yes. Thankfully, Zack stepped in as sous chef. I mostly made the salad.

Yesterday, exactly one month after surgery, I had my first radiation appointment. Dr I (and his team of minions) used a CT scan to make a 3D model of my torso. This will allow them to design the firing pattern for the radiation emitters (I'll figure out what they are called when I begin next week). The only problem was an area-type geometry one: to fit into the CT, I needed to get my arms up over my head with my elbows down. Unfortunately, I don't quite bend that way, yet. Eventually, with three technicians pushing and maneuvering, I got into a suitable position. Who knew lying on a table could be that difficult? By the end (after 15 minutes of Sarah saying 'just two more minutes...') I was panting and sweating.

Speaking of panting and sweating (and stretching, and aching), I also started physical therapy last week, with my first real appointment yesterday. (Oh yes, I did PT after working so hard getting into the CT yesterday morning. Really dumb.) Robin and Claudia are both trained lymphedema specialists, who work with lots of breast cancer clients. They are charming, upbeat, sweet, funny, lovely...with an inner core of pitiless drill sergeant. I have complete confidence that I will regain all of my strength and mobility, whether I like it or not. Robin and Claudia definitely respect my pain threshold, and have emphatically stressed that PT is 'not a no pain/no gain proposition', but they most certainly don't kid around.

So, for the next 6 weeks, my schedule looks like this:
Radiation, Monday through Friday, 2:45-3pm
Physical Therapy, twice per week before radiation for an hour.
Stretching at home, every day, 30 minutes

Jumping jacks, here I come!

Happy Holidays

2007-12-25T05:29:00.000-06:00

We are now poised on the precipice of what could be the end of cancer for good. With only a week between now and the start of radiation, the thought of the end is palpable. Of course, it's merely a arbitrary point we've defined as the end. There is still the possibility of more chemo (we still hope not). There is still the hormonal therapy that will last years.

The shift will be from the constant focus on destruction to the growth and nurturing of the new life we have created for ourselves. Slipping into our new normal. I still marvel at the chaff that has been burned away by going through this experience. The trivialities of life that no longer seem as important. May they never slip back into our lives in any way.

At this break in the rush in everyone's lives I want to say thank you. To those who gave what they could, for your generosity. To those who could not be with us physically, for your support from afar. To those who felt they could have done more, said more, or been more, for your ability to forgive yourself (for we hold no blame). To everyone, I wish a clean start to their lives this year more so than any year. Trim the proverbial fat and use this next year to focus on what is important, not what fritters you away slowly in triviality.

Much love to you all.

Drain Free

2007-12-19T08:18:00.000-06:00

Another big milestone on the way to recovery - Dr. L took out the surgical drains! Hooray!

At this point, I am still very sore but the sharp pain seems to be over. My mobility is coming back slowly, but a lot of my strength has returned. For the first week, walking upstairs left me panting and shaky. A shower was enough to exhaust me for several hours. Yesterday, though, I showered, dressed, walked downstairs, and made myself breakfast before I needed a rest. It's not the Chicago Marathon, but it was a dramatic improvement over last week.

Cautious Optimism

2007-12-12T11:47:00.000-06:00

Dr. B received the pathology report today. She thinks we should take it with 'cautious optimism'.

The left breast had no evidence of any cancer.

In the right breast, the pathologists found an area of two centimeters containing microscopic tumor. This means that the chemotherapy transformed the 12 cm solid tumor that we started with in August into a 2 cm lump of tissue with only microscopic pockets of cancer cells. This is incredible, and proves the cancer had a very strong response to the chemotherapy.

Of the lymph nodes on the right side, 10 of the 16 lymph nodes that Dr. S removed had 1-3 mm pockets of cancer. The bad news is that so many were involved, and cancer remains in them (the lymph nodes being breast cancer's gateway to the rest of the body). Dr B assumes, though, that those lymph nodes were chock full of cancer in August, and that we can take it as a very good sign that the remaining cancer is so small.

Dr. B still plans to have me consult with some other area oncologists to see if more chemo would be advisable. At this point, there would have to be some pretty compelling evidence to get me to go another round right now. My hair is beginning to grow - it feels fuzzier - and I can eat unimpeded. I hadn't realized how cruddy I felt until now, when the effects of chemo have partly worn off. Now that I can relax a little on being brave, my defenses seem to be coming down. I know I could do more treatment if I had to - I won't back down from a challenge - but it would take a huge act of will.

Home is Where the Lynn Is.

2007-12-10T15:22:00.000-06:00

So I am at work today and I realized that I'd much rather be home. It's not that I dislike work. I just like home. Of course being at the hospital wasn't great, but I was with Lynn so it was better. There is something about really enjoying being home. Nothing replaces it.

Dare I say that there is something to the communal living which allows us someone to be there for us day and night should we need it. John and Sarah have been great and willing to drive the hour plus to reach us, but think of how easy it would be on them being down the street. But I digress.

Lynn gets chinese food in celebration of one week since surgery. Yay Lynn!

Dammit!

2007-12-09T14:39:00.001-06:00

Ok, so things were progressing so well, that I think we got cocky. This morning started with productive nausea which lasted the majority of the morning. Our thought is that there was too much pain medication on top of an empty stomach overnight. Now we know that no pain meds overnight is the best idea.

Lynn has had some things to eat that have stayed down, but mostly it's liquid right now. Just a rough day for her considering she couldn't keep down the pain medication until an hour or so ago. Stupid medication---you figure they'd find a way to deliver medications with minimal side-effects by now.

Did Someone Get the License Plate?

2007-12-08T21:19:00.000-06:00

We had a bit of a scare today when I got unwrapped to take my shower. Over the last few days, it seems the bruises from surgery have really developed. Dr. L warned us about this (I think - I wasn't really with it in the hospital...hellooooooooooo morphine drip). But neither of us tracked whether bruising was OK, or worrisome, or maybe both. Either way, I woke up in extra pain this morning, so when we discovered the fantastical colors hiding underneath the bandages, we called Dr. L. He wasn't sure what Zack was describing, so asked us to send pictures. That's right - we emailed digital pictures of my mottled, lumpy, steri-stripped chest to the doctor on a Saturday morning. Anyway, he called back and said everything looked fine, and to just keep up with the pain meds. So now you know, if those pictures end up posted on some celebutante website, just how it all started.

I'm Back

2007-12-07T16:48:00.000-06:00

Having spent a thoroughly civilized afternoon - sitting up! in a chair! - I am feeling much better. My chest is very sore, and I have extremely limited arm motion, but I made it up and down stairs twice today with no ill effects. Solid food and I seem to have come to a new mutual understanding, as well. Even with a laptop, the keyboard is at the far end of my comfortable reach, so my posts will be short for a while.

Progress Report

2007-12-07T12:06:00.000-06:00

We made it down the stairs today (yay Lynn!). She is lounging in the comfy chair by the fireplace (no fire lit as of right now, but we'll see). I am just about caught up on the chores around the house and was thinking about a mid-day nap. We'll see how that goes.

Lynn has mentioned visitors, so I want to invite everyone who wants to visit this weekend to let me know (via the usual channels). Keep in mind that these have to be shorter visits (like an hour, with an hour between), as she has very little energy. I am happy to entertain while she takes breaks, of course.

Road to Recovery: Step 1

2007-12-06T17:22:00.000-06:00

Lynn has made the first major step toward recovery this evening. She showered. She says that she feels more human now. Given she is eating (if small portions) and is sleeping better, we are now completing step one of recovery and moving into step two: more activity.

I am very proud of her. She is working very hard. Thank you to everyone who sent flowers from near and far. They go a long way toward cheering her up. I hope for a Lynn post sometime tomorrow. I keep telling her she has lots of fans, but she never believes me.

Snow Day

2007-12-06T08:38:00.000-06:00

For all those times I wished I didn't have to go out and shovel and get to work when it was snowy out, I have today. Sometimes you forget to appreciate the days you were wishing for at other times (is that english?).

We both slept fairly well last night. Bedtime was around 8ish after meds and clearing the drains. We didn't wake up until close to 8am this morning with a break at 4am for more pain medication. Drain output this morning was less, which is a good thing (I have to get over the thoughts that I'm doing it wrong). The pain medication is weaker than at the hospital so I am going to call Dr. L and see if we can do Ibuprofen in addition to what she is already taking.

Breakfast was green tea and a fruit smoothie (frozen strawberries, banana and milk). Lynn wishes she felt better. She was hoping to be sitting in a chair downstairs by this morning but we'll see if she's up for stairs this afternoon. Mingus came up instead as he was tired of being ignored. I'm thinking of making some banana bread this morning/afternoon as an enticement into eating more solid foods.

Update: Dr. L approved Ibuprofen. We'll see how that works today.

Home!

2007-12-05T12:49:00.000-06:00

Discharge was at 11:15 AM. Lynn is in bed and medicated and we are mostly unpacked. Just have to shovel the drive to get the car in and then we are in for good for a while. Thanks again for all the support!

We will post again when Lynn is ready.

Winter Wonderland

2007-12-05T08:16:00.000-06:00

Outside it looks like a great deal of snow is covering the land. Very pretty.

Lynn is doing better this morning. She didn't sleep enough, but the fever is down to 98.6. Dr. L stopped by this morning and said that a low fever is normal post surgery. We need to watch for any sustained temp above 100.5 or spiking s well as any bruising, redness or heat in the area.

Though this room was big enough for the cot, the positioning kept the tech from being able to do some things so I was back to the recliner. Actually not so bad considering the recliner goes back pretty far and the cot wasn't that comfortable.

Dr. B stopped by last night to check in and also said she'd be back in the morning. We'll see what she says if she gets us before we leave. Dr. L says we can leave whenever we want.

A Change of Plans

2007-12-05T03:19:00.000-06:00

Lynn woke up with a fever. They've been checking her every hour and even with Tylenol it went up. At last check (2:15 AM or so) she was at 100.8. Nothing terrible for someone in normal conditions, but now I am worried (and glad we stayed---I'd be a wreck if we were home). Our plans for going home tomorrow morning are temporarily on hold until this comes down.

A big thank you to our neighbors who have been watching our house and taking care of our cat and mail while we have been gone. I will update tomorrow morning once we know more.

Hotel California

2007-12-04T20:41:00.000-06:00

Lynn has walked around several times. She ate a light dinner (broth, jello, cranberry juice and some tea) and kept it down. So you may ask why we are still in our hospital room. Well, because we're unsure as to the best option. The suggestion of the nurses was to stay the night and be sure to get things down and have breakfast in the morning. This would further confirm that she was good to go and allow the weather to clear up. Who am I to argue with reason? Ok, it's what I wanted in the first place--I don't risk much when it comes to Lynn.

Our plan is to leave in the morning for home. We can't wait. We hope our cat forgives our absence. He's ornery that way, but he means well.

One Small Step for [Wo]man...

2007-12-04T12:48:00.000-06:00

...one giant leap for Lynn!

Lynn walked to our new room. A good 50 yards (flowers from Jemma, Steve and Dylan followed--thanks)! We have now been moved to the A-Team. Seems that the head of the oncology nurses was upset that Lynn wasn't with her and found a room and moved us as soon as possible. Looks like her concern spread to her nurses as we've gotten the gold treatment for the past 2 hours. Lynn is now peacefully sleeping and is in less pain. Nausea hit again after the move, but she had also just exerted herself and was to be expected. We're cozying up for day 2.

There and Back Again

2007-12-04T11:09:00.000-06:00

I was able to take a quick trip home this morning before the snow hits us hard. The general rumblings from the denizens of the floor was that we'd be here another day, so I wanted to take advantage of the clear weather to get home and shower, change, check messages (hi Michelle & Kelsey!), bring in deliveries (thanks for the pot pie Matt & Shelley!), scritch the Mingus and grab some things I forgot. Round trip = 1 hour. It's good to be close.

We had visits from Dr. L and Dr. S this morning. Dr. L inspected the reconstruction and seemed very pleased with the results. Given the pictures we had seen in his office, I have to admit I was pleasantly surprised. All things considered, things look very natural. Time & healing will tell the bigger tale, of course. Both doctors also echoed the sentiment of potentially staying another day (without using those words) as well as a focus on getting up and around first and eating second.

Special Note: We are changing rooms to 1081. Don't worry if something is already on the way. If it has Lynn's name, they'll find us. We're just moving down the hall.

Internal Review

2007-12-04T09:04:00.000-06:00

Seems that Lynn's insides aren't quite ready for food as of yet. Nausea continues with only slight recovery of the stomach and related items. She is going to get additional nausea medications (yay, more zofran!) and will continue with water--I'm hoping for broth or soda soon. Worried now that she is not intaking enough calories. She has not eaten anything since Sunday evening around 7pm. I will officially be worried at 48 hours---we are now past 36 hours without calorie intake.

Good Morning! Nice of You Guys to Drop By.

2007-12-04T05:20:00.000-06:00

At about 5am I was up with the nurse's second check of the overnight shift. This might be the one time in my life where I'm very glad I'm a light sleeper. I think I slept about 4-5 hours between 10 and 5am, which is just fine with me--I'm awake enough now and helping to dispense some of the meds while Lynn sleeps some more. She was awake with me at 5am and had some pretty intense pain, but also wasn't on pain meds all night while we both slept.

At this point it's all about sleep and pain meds. The nurse mentioned water, broth or tea, so I am assuming they are hoping that she will take down more fluids and even some nutrients soon. Hard to do while she is sleeping, but I want her to continue to do that while I'm awake and can dispense pain meds for her. I figure if I can keep this up for the next 2 hours, she'll wake up considerably better than before--painwise.

For those of you playing at home, we are here at least until noon, but we won't know when we will be leaving until much later. Given Dr. L said that he would stop by in the morning or after, I wonder if he was assuming closer to evening. I think the name of the game today is nutrients/fluids and getting out of bed for Lynn. I'm not going to rush getting her home.

Final Update

2007-12-03T17:34:00.000-06:00

We are all settled in room 1065 (Hospital Info). Lynn is restful (in and out), has small bouts of nausea and is in some pain (was worse when she woke up, but the little button makes it go away fairly quickly). She will have oxygen for 12 hours and has compression on her legs right now. Asked for a cot for me later, but it's a small room so I might be sleeping on the recliner---let's hope for all involved that does not mean snoring.

We both look forward to being home whenever that is.

Second Update

2007-12-03T15:45:00.000-06:00

Dr. L came out around 3:30pm. Says the surgery went fine and she is now in recovery (yay boring surgery #2). I had the volunteer bring her hat down to her in an effort to sneak down early. She said that Lynn was resting peacefully. My favor in return was to mind the phone at the surgical waiting room here. I will send out a final update with the room number.

First Update

2007-12-03T13:23:00.000-06:00

Dr. S came in much earlier than expected (1 PM). She passed along the news that Lynn is doing great and that everything went as expected (yay boring surgery!). Dr. L is already started on the reconstruction (we were given a 2-3 hour estimate by Dr. L prior to surgery). Lynn's parents are here with me and waiting for the final good news. Will write again once Dr. L comes in with his final update.

Pre-Surgery Update

2007-12-03T10:59:00.000-06:00

Lynn was just wheeled away to the operating room. As much as I have faith in the people whose hands I have placed her into (and they have been great all day today and prior), I worry. I am not someone who cries easily and I teared up several times before she went. We are clear that we are at the end and need a long break from the whole mess. This is our do-over start. From here on out we begin again.

24 Hours of Cancer

2007-12-02T17:05:00.000-06:00

(Lynn) My mom said something great today at 4 o'clock: "24 more hours, and you don't have cancer anymore". In all the worry about the surgery and what it means, combined with the focus on the chances of recurrence, I'd forgotten all about this simple fact. The chemo knocked the cancer down to a (flat) golf ball sized lump, and the surgery will scoop out the remnants. Although there may be microscopic cancer cells circulating around my body, the cancer I've come to know so intimately over the last four months will be gone.

All I can say is, it has been a long week.

I've spent a long time looking in the mirror, both figuratively and literally. For me, dealing with cancer has meant 'going in', as my cousin says. Going inside my own perceptions about myself and the world, listening to my (constantly changing) feelings, and trying to regain equilibrium. On any given day, I am despondent, raging, resigned, and peaceful. This week has been the worst, emotionally, though I have felt the best physically.

The best part of the week has been the incredible outpouring of love and support we've received from every corner of the earth. I really needed you all this week, and you've been amazing. I am ready for the surgery tomorrow...I can't say excited, but I am as ready as I can be. It is just a change from one form to a new form. Caterpillars do it all the time, so how hard can it be?

(Zack) To the business at hand -- All of you have inquired about location information and timeframes. We know that we will be at the hospital until later in the day on Tuesday. I will post once I have more information on rooms, but here's the basics:

Lake Forest Hospital
660 North Westmoreland Rd
Lake Forest, IL 60045
847.234.5600

Thanks again to everyone for their support this far. This is a major step for us (but mostly Lynn). It has meant the world that you have been with us.

Something to focus your thoughts for the next 24 hours....

Going Away

2007-11-26T10:11:00.000-06:00

Hey, we need your help! We would like to plan a local trip (within 4 hrs +/- 1 hr drive of Waukegan) to someplace nice and relaxing for the week of xmas. Bed & Breakfasts are very welcome and pampering is a suggestion. Interesting things to do are also nice.

Our second trip will be a bit more dramatic. We're looking to really go away around late February. Similar needs as above with perhaps a bit more activity would be great.

Thanks in advance! We hope all our U.S. friends had a relaxing Thanksgiving.

Chemo 8 Complete!

2007-11-19T07:26:00.000-06:00

With a bow and flourish, we happily announce that we are finished with the first batch of chemo! Hooray! I had one bad day (Saturday), but have overall been OK. So, now, we are hoping and wishing and praying as hard as we can that this last round of Taxol will clean up all the remaining tumor, as this would remove the need for more chemo next year.

It has been a tumultuous last few weeks, trying to integrate the joy of being nearly finished with chemotherapy, the dread of upcoming surgery, and the terror of the possibility of more chemo and what that could mean. Thankfully, we get a few weeks off to process everything that has happened before we need to assimilate any new information. Although "wait and see" is not really something Zack and I are good at, we are grateful for a little break (or, we could just be too tired to worry about anything else right now). After surgery, we'll start another round of doctor's appointments to plan the next stages, and we should have a revised plan by Christmas. Right now, though, we are focused on Thanksgiving/Christmas with the Gazley clan, eating, drinking, and making merry.

Back to Normal

2007-11-13T10:02:00.000-06:00

We had an interesting conversation recently that has made me reflect on what is normal? Comments have been made relating to us getting back to normal when this is all over. But what if normal has changed? There are so many differences. I am not going into the details of what we will look at differently, but for the sake of discussion let's talk about reconstruction.

The words reconstruction and cosmetic surgery should never be compared. This procedure regardless of what we choose will never have Lynn feel the same. It will never look the same. It is never going to have her forget what she went through. There will always be a reminder of this experience and that it may return.

Normal is what you make of it. Better to say we can get back to living life the best way we know how. We recreate normal every moment. To be enlightened, one might say that we should use all bad experiences to grow. We definitely have. But from time to time, it is ok to feel what is there and to just allow it to be. Everything is ok, just the way it is and just the way it is not.

Surgery Update

2007-11-11T07:04:00.000-06:00

Turns out the hospitals and two surgeons couldn't coordinate on December 7th. The surgery has been rescheduled for the morning of December 3rd (Monday). So, all things going well, I should be home by Wednesday, December 5th. (They did offer to let me wait until December 14th, instead, but I couldn't imagine waiting any longer. I am already nervous enough!)

We had a good meeting with the plastic surgeon this week, rounding out our medical visits. The most reassuring thing we heard from him was that if something goes wrong with the implants, or I decide I just don't want to deal with them, or anything else, he can just take them out without any further consequences. The skin and muscle will all collapse back, and be fine. For some reason, having a little wiggle room feels very safe.

We were also very pleased that Dr L has already talked to my radiation oncologist (a person I haven't met yet) about coordinating the radiation and expanding the implants. I am very lucky to have team of such good communicators.