I will not glow in the dark afterall

I'm a little delinquent in updating everyone with regard to radiation. As of now, there is no evidence that I need to have it. YAY! The doctor I met with, Dr. Pelton, felt that since there are no microscopic signs of cancer in my lymph nodes and we will never know if it existed prior to chemo, there's no sense putting me through radiation. However, I just squeaked by. Had my tumor been 5 cm or more then radiation would have been a certainty. But since it was approx 4 cm...I passed.

The appointment with Dr. Pelton did yield some interesting information that I am really grateful to have received. I now know that there is still a chance of local re-occurrence. So here I thought by having a skin sparring mastectomy I eliminated my chance of that happening, in actuality, the skin isn't scrapped clean of breast tissue.... a rind is left behind and it is in this rind that the cancer can re-occur.

Kind of a bummer...perhaps I would have chosen a normal mastectomy vs. skin sparring had I known previously. The upside of this is that if it happens the cancer will grow up toward my skin and is usually represented by flat red patches. It's easy to see. So that's good. And now I know what to look for. Dr. Pelton said that red means red alert...and to get my butt to Dr. Kovach's should I see any red spots on my skin.

So if you catch me checking out my chest, I'm not admiring my new physique...I'm looking for red spots :)

Whoa, I suddenly have 'boobs' again.

Albeit temporary boobs. What a trip. I was kind of getting used to this flat chested thing...but today...after my second expansion there's a marked difference. The plastic surgeon injected 100cc's (compared to 60 last time). So far, I just feel some mild pressure, but I fully expect to be pretty sore tomorrow.

I have to say, I figured I would have a hard time with the mastectomy...but in reality (pain aside) it's been refreshing. I look so much thinner and I can button up my shirts and coats. So now I'm of two minds about reconstruction. On one hand I'm looking forward to it so I don't look like such a mangled mess. On the other....well...I can't make up my mind about how large I end up going. Very confusing, and I need to make up my mind soon.

Bummer...

I saw my oncologist, Dr. Kovach today. While I've tried to be very upbeat about the pathology results post surgery, I will admit to being disappointed that there was still active cancer found. I suppose that's natural, right? Well, Dr. Kovach was also disappointed...which really didn't do much for my attitude. I think this is the first time I've really felt at all defeated.

Wait, don't worry. I'm not saying that I fear the cancer will come back. Okay, yes that is what I'm saying. What I mean is, is that I am still certain that I have beaten this thing...but it would have been nice to be able to say that chemo killed it all, consequently, I could be fairly certain that any stray cancer spore's that were roaming through my body are also gone. Now as it stands....we can't be sure.

With all that said, Dr. Kovach still says on the spectrum of good to bad, I am on the good side. He has seen patients who's tumors haven't shrunk at all. Mine did. At least by 50%. Perhaps more. It's just not the perfect outcome he'd hoped for. And he did confirm that at this point I don't need a second round of chemo. Phew! Especially since I had my port removed during surgery.

So next Tuesday I am meeting with an Oncology Radiologist to make sure I don't need radiation. Originally I assumed that if my lymph nodes came back negative for cancer (which they did as we all know) that eliminated the need for radiation. For the most part it still does, however, Dr. Kovach wants to just make sure. He's not pushing for it, but feels like he needs to have all bases covered first.

Anyway, radiation would screw up my reconstruction schedule....and force the plastic surgeons to rapidly expand me. That equals OUCH! Typically implants are not done on patients who require radiation. Since that's my only option...well...there's pretty much only one way this can go in my mind.

I also picked up Tamoxifin...the drug that I'll be on for the next five years. I can start at any time. I'm debating whether I begin taking it this week while I'm still off of work, or wait a while longer until more of the lingering effects from surgery wear off....

Next week will be a busy one. I go back to work on Monday, at least for part of the day. I anticipate needing to ease back into it slowly. Tuesday with the radiation folks, and Friday will be my first post surgical expansion. Should be interesting. I guess the fun is far from over.

Surgery and beyond...

Sorry for the delay! This week has been spent slowing acclimating myself to typing. I started checking my work email on Monday and quickly overdid it. Who knew that typing put so much strain on your chest muscles?

Before I chronicle the past two weeks, I have to thank everyone for all the well wishes, cards, flowers, food and help. I've been saying this since last September, but I can't tell you how much I appreciate everything, and am totally flummoxed. I can't figure out what I've done to deserve such an outpouring of support from so many wonderful people! I will do my best to thank everyone by name (a nerve-wracking task, since I'm sure I'll miss someone) in my next post dedicated to my Hero's.

So here we go:

Thursday Feb 3
It was an early morning, as Cory and I had to be to the UW Surgery Pavilion by 6:30. Lucky for me, I was not allowed to wear any lotion or make up, and without hair, getting ready was easy. Unlucky for Cory was that I also could not eat or drink anything. The lack of caffeine coupled with slight nerves made for a crabby Amber. One minute I snapped at her and sent her away, only to then realize that I wasn't going to be allowed back to the waiting room, so I had a nurse fetch her so she could keep tabs on where I was. Sorry Cork. I wasn't thinking straight.

Prior to surgery I had to have my lymph nodes mapped. Cory and I were shuffled to another part of the hospital. This was a pretty simple procedure where radioactive contrast dye was injected into a very sensitive part of my right breast. After a wait of 45 minutes photos were taken and a geiger counter-type of device was used to identify the sentinal nodes and mark their position on my skin. This was for a biopsy during surgery. The sentinal nodes would then be sent to a lab with my breast tissue to determine whether my cancer had metastasized or not.

After mapping, and winding my way back to where I started, it was on to pre-op where I met up with Kevin and Cory. I received the lovely gown that I'd wear for the next 2 days, the exact nature of my surgery was recounted over and over.

(Sidebar for those who aren't entirely sure what I had done: Bilateral skin sparring mastectomy with tissue expanders installed)

Then there was the insertion of the IV. I hate needles to begin with, especially IVs. After 4 attempts to thread it, I finally asked if they could use my port (which was going to be removed during the procedure). The anesthesiologist agreed and decided to start the IV after I was out so not to torture me. Apparently it's not uncommon for chemo patients to have what he called "spastic veins".

I can't go into much detail from here on out. After a short discussion about the lovely shade of nail polish I was wearing and what I do for a living, I remember saying that I'll be a sleep any second. Then I remember being wheeled to my room with Dad in tow. By the time we got to my room Cory, Kevin, Sue and Mariah were already there. Then I told everyone to stop talking. Obviously I was still crabby!

At this point it was all about the pain.

I have an intolerance to opiate-based pain meds. So early on (and from my standpoint things are hazy) I wasn't given much for the pain. I recall spending the majority of the day only on Tylenol. Not fun. It wasn't until my surgeon came by to see me later in the evening that he mentioned that my nurse thought a muscle relaxer would help and he set my mind at ease on trying oxycodone. He promised that they'd manage the vomiting with anti-emetics. I agreed and the nurses spent all night and half of the next day trying to break through my pain and get me on a good path.

That first night was pretty bad, my nurse checked on my constantly = no sleep, but managed to miraculously get me out of bed to the bathroom. Wow, that was not fun. That first nurse, Cara and the woman who relieved her, Maureen, were awesome. They really got things under control. That is until Challie (pronounced Shelly) took over. She managed to single handedly screw everything up, which forced me to spend a second night in the hospital.

Saturday February 5
Kevin arrived at 7 am to help Cory get me to the car and into the house. Cork was a little late (she went grocery shopping for me first). But it didn't matter, the doctor's didn't come by until nearly 10:00. At this point I was doing really well again, on a good med schedule and ready to get out of there. With Cory's help I'd gotten dressed, had shoes on, eaten, and removed a strange adhesive thing that Kevin noticed behind my ear.

By noon, I was in a wheel chair and on my way out.

No sooner had we reached the lobby and the vomiting started. What the hell? Two nights in hospital and nothing. We left anyway. It was a very painful ride home. More yelling and snapping at Cory for driving too fast over bumps.

Home at last. Cory with Kevin's help, got me settled on the couch, propped with pillows. And more throwing up. No more oxy. Hello pain.

Monday, February 7
Remember that adhesive thing that I removed from behind my ear? Yeah. Well that was a super strong, prescription-strength anti-emetic that was put on during surgery. THAT is why I didn't get sick in the hospital. The minute it came off, the oxycodone did exactly what I feared. It made me sick. Upon calling the surgery advice line, Cory lucked out and got one of the residents who was present during my procedure. The first thing she asked was if I still had the patch behind my ear. Aha! A prescription was called in, a run to the drugstore, and all was restored, pain dulled. Until....

Tuesday February 8
A lovely rash appears on my stomach. This is cause for my doctor's to immediately take me off of the oxy. Here we go again. The resident called in a new script for me, but after picking it up, Cory opted to not give it to me as it was another opiate.

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It's now 15 days post surgery, I've been hanging in there with a heavy dose of Tylenol and the muscle relaxer. Things are definitely better every day and in contrast to last week...leaps and bounds better!

Cory stayed with me for the first week and had the toughest job. Not only did she have to wait on me, keep on top of my meds, but she also had to change dressings and clean the drains I had installed. She really had her hands full and did an excellent job with a super cranky sister as a patient. I am so thankful she was up for the challenge.

Erika relieved Cory one week after my surgery. She and Kevin took me to the first check up where I got the drains removed and found out that my lymph nodes are clear of cancer (which means no radiation!). They did find one 1.6 cm active tumor in my right breast, but that is significantly reduced from what I started with. All indications point to having a good response to chemo, and with wide clear margins from surgery, I'm well on my way to being cancer free.

Erika stayed with me from Thursday the 10th until Sunday when my mom took her turn to take care of me for a few days, and Erika is now back again until this Sunday.

This past Tuesday I had a check up with the plastic surgeon. My incisions are healing really nicely...she was amazed at how fast I heal and even more amazed that I've been recovering without narcotic pain meds. To be honest, it hasn't been easy, but compared to that first night, it's been a breeze.

Moving forward, I have my first expansion on March 4, then every other Friday until April 15. The plastic surgeon assured me that expansions are way easier than what I'm going through now. It'll feel like I just worked out too hard. That was a relief to hear. I was starting to wish I'd been born flatter chested so I wouldn't have to go through this!

At any time I can decide that I'm big enough and stop. Or on April 15 if I'm not happy we can continue. Once I'm satisfied I have another surgery to swap the hard plastic expanders for nice soft implants. The remainder of the summer will be punctuated with smaller procedures and I should be done by August/September.

On the medical side of things, I have an appointment with my oncologist to start laying out my maintenance schedule. It will include a pill everyday for 5 years and, to start, blood tests every 3 months.

More fun to come, I'm sure!

Twas the night before surgery

...and I have to thank everyone for the emails, texts, phone calls and Facebook messages of good thoughts! You all are awesome and I am so thankful to have such wonderful, caring friends and family. Oh and a belated thank you to Suzanne for organizing a happy hour "toast for the ta ta's" outing last week with some co-workers/friends. I had a blast and really appreciate everyone getting together for the big send off.

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The most challenging part of the today was making sure I had everything taken care of and covered at work! It's been a wild week getting ready this, I can't help but think I forgot something. I finally just had to leave, otherwise I would have worked until 10:00 pm again. Why is it that four weeks sounds like such a long time, when normally it goes by in a blink?

I ended the day on a high note with a massive sushi dinner (thanks Kev!), my first bite of sushi since September 29! Yes, I have been longing for sushi since that day.

Okay, time to get things ready for the morning. I check in at the UW Surgery Pavilion at 6:30 am. I'll log back on with an update of how things went as soon as I can. I know it will be fine...hell I may even surprise everyone and show up at work on Monday. (Kidding Cari...I promise I'll take at least a week off ;)

Until then...

Next step...surgery

February 3 is the target date for surgery. EECK. Now that I'm here, I'm getting nervous. Actually now that I have more information (thanks in part to Google), I'm freaked out. This is a way, way, way bigger deal than I initially realized.

My surgeon, Dr. Byrd, is recommending that I take a six week leave of absence from work. I'm hoping that it'll only be 3-4. Roughly a week after surgery I'll have the pathology report back. That'll tell us whether there is cancer present in my lymph nodes. Fingers crossed there isn't. Once that is determined then I can start moving forward with the next stage of treatment and reconstruction.

Stay tuned folks...the fun isn't over yet! And thanks for hanging in there with me.

One week after chemo

Yes, last Friday I finished up the first step of treatment. My last day of chemo was pretty uneventful. The tingling in my toes hadn't gotten any worse, and even though I developed a bit of tingling in the tip of my right index finger, Dr. Kovach saw no reason to extend things.

I will say that it was an odd feeling leaving the transfusion room for the last time. I'm not sad about it, but it's been such a constant part of my life for the past several months. I was told early on by doctors and other cancer patients that depression is a common occurrence after treatment concludes. Patients become so accustom to having all eyes on them, that once they're "back to normal" and no one is paying attention to them any longer, that it's hard for some to take. At the time I thought that was the most ridiculous thing I've heard. But now I can see how that may happen. Like I've said all along...I'm looking forward to talking about the weather at some point!

I have to thank Kevin, Mariah and Erika for ending chemo with me...and it's fitting...they're the one's who started it with me! We came full circle.

The end (of chemo) is nigh

Treatments six and seven are under my belt! Only one to go, hopefully. More on that in a sec.

Chemo number six continued the trend that began with the switch to Taxol. This time instead of Benadryl, I was given Claritin which made it a piece of cake. This round was really uneventful. Down right boring. Literally...three and a half hours of snoozeville. The only break in the monotony was needing to wheel the IV to the bathroom every twenty minutes.

As they say nothing is free. While I don't have the nausea and fatigue that came with the Adriamyacin and Cytoxin, I now have hot flashes and mild neuropathy to look forward to. I suppose I can deal with both, but it's hard being only 40 and going through menapausal symptoms.

My All-stars for this round are:
Rod for pinch hitting and taking me to chemo at the last minute!
Cari for bringing me super, awesome comfort food!
Kirsti for soup, picking up dog crap and cleaning up my storm ravaged yard :)

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I was a bit nervous that round seven would be postponed yesterday. Unfortunately I picked up a doozy of a cold on Christmas and the fear was that my blood counts would be too low for me to have treatment. Luckily that wasn't the case and chemo went off without a hitch. Almost.

As I said I have some neuropathy. To explain further, it is a tingling and numbness in the extremities. Mild cases can take several months to a year to go away after chemo. More severe symptoms can remain permanently. My oncologist was very adamant early on that I tell him immediately if I felt anything, especially in my hands...as that could interfere with my job. So far I'm only experiencing it in my toes and at times my feet feel like they're asleep.

Dr. Kovach and I discussed several options. One being a new chemo drug...which would likely make me really nauseous and fatigued. A second option was to split my last two treatments into 6 smaller weekly doses. I managed to talk him into letting me move forward status quo with the promise that I will tell him if the neuropathy gets worse over the next two weeks, in which case I'll have to take one of the other options.

Fingers crossed...

My thanks this week go out to Ray for putting up with the three hours of boredom, to Erica Jorgensen for the awesome quinoa salad, and finally to my baby sister Erika for cleaning the house (and poor Mugsy, who really needs a bath).

In the words of Louis Armstrong...

It's been a few weeks since I've posted, and there is a lot to talk about.

Let me start off with the amazing, humbling and awesome night of December 12.

My cousin John, his wife Laura, several of their friends, family and their staff at Mor Mor Bistro and Bar in Poulsbo, put together a charity wine auction. Every year they give so much to very deserving organizations through their auctions, this year I was fortunate to be the beneficiary of their generosity to help offset my medical bills.

I can't express just how awe inspiring the evening was. I was a bit nervous at first...it's still hard for me to accept help and I thought I'd be uncomfortable being the center of attention, the last thing I wanted was to be known or seen as poor cancer girl. But it wasn't like that. It was a really fun evening, and I met a lot of wonderful people, several of whom are cancer survivors themselves. And no one looked at me as if I were to be pitied. Of course, Dad was there too...so some of that attention could be diverted toward him :)

The best part was that I was able to split the proceeds with the Washington State Council of Firefighters Burn Foundation. As most of you know, the burn foundation is one of my freelance clients. Rod Heivilin, executive director, has worked so very hard to raise money for burn research and to help children with burn injuries.

I'll never be able to thank everyone involved enough—from those who donated rare and expensive wines, gift baskets and other auction items, to those who came and opened their hearts and wallets, to my family and friends who braved the monsoon. I'd love to name everyone individually but there are too many. Just know that if you were there, thank you from the bottom of my heart. Most of all John, Laura, and their staff.

At the end of the evening, $12,000 was raised.

It's a wonderful world.

(and do me a favor, if you're near Poulsbo, grab a bite to eat at Mor Mor. They're at the east end of Front Street downtown :)