No more chemo!

Most of you know that four weeks ago I started the next chemo drug "Taxol" and that two weeks afterward I was admitted in to the hospital due to fever and shortness of breath. I was in the hospital for five days while they did all sorts of tests. The fevers went away but the shortness of breath stuck around. The most they could figure at the time was that I had pneumonia. I also had heart weakness and low oxygen levels at night. So they sent me home (FINALLY) on heart meds and oxygen and all the specialists I'd seen questioned Taxol as the culprit.

This wasn't the first time I'd been in the hospital since chemo. I'd been admitted after the first dose of AC for dehydration and infection. My onc said that my body was just sensitive to the chemo and that's why I was always sick. Anyhoo.

Today I went in to see the onc since my hospital stay. She had told me that we were going to try a 3rd drug, "Taxotere" and possibly cut it down to one week doses instead of larder two week doses. But at my visit today she told me that she'd done a lot of thinking and research and came to the conclusion that it was more dangerous for me to continue chemo than to stop treatment. (I had three more treatments to go.) She showed me a reputable study where women with the same tumor as mine (hormone receptive, HER negative) showed little to no benefits from Taxol or Taxotere. So instead of doing chemo #6 today, she gave me my prescription for Tamoxofin (a drug I have to take for five years) and told me to hook up with my radiation doctor soon.

Soooo, no more chemo for me. I made one more foob expansion appointment with my plastic surgeon for Jan 11th, and will contact the radiation doc sometime this week to set up my first radiation appointment. I start student teaching on January 14th and I'm glad I won't be sick from chemo so I can start with a clear head!

Everyone needs to cross their fingers that radiation will be a BREEZE for me (since chemo sucked butt). Bad enough I have to student teach ALGEBRA at SPRINGFIELD HIGH SCHOOL wearing a SCARF on my bald head. Let alone burns and sleepiness from radiation!

By the way, my head now resembles that of Jean Luc Picard from Star Trek's Next Generation. "Make it so!"

How I Spent My Day

Chemo appointment #5 out of 8 (yay! over half-way done!) was scheduled at 9:45AM this morning. My doc wanted me to have blood drawn and see her before I got started. My port of course wouldn't give blood (no matter how hard they tried) so they stuck me in the arm. Twice. No new bruises this time though, so that's good. And they finally got enough blood out of me to move on. I got weighed (I've lost ten pounds since chemo started and weighed in even lower today. Heck no, I'm not going to tell you how much I weigh! Are you crazy?? Okay. 120.) and blood pressure cuffed (a little high, but not horrible) and temp and all that. Then I waited to see the doc for awhile. I was in with her for less than ten minutes. Nothing new. I guess she just wants to ask me how I'm doing and check my breathing/pulse/etc. Then she told me to find a seat in the chemo room and she'd be back with the orders soon.

By the time the nurses hooked me up it was 11AM. They gave me new drugs today! No more AC. Now I'm getting Taxol. When I asked how long it would take, they said 3 hours. HA HA HA HA What they really meant was the TAXOL would take 3 hours. They're sneaky. Because before they can give you Taxol, they give you a bag of Steroids. Then they give you a bag of Benedryl. Then they gave me nausea meds. THEN they gave me the Taxol. Only on your first day of Taxol, they have to give you three drops and wait 30 mins to see if you have an allergic reaction before they can continue the drip. Needless to say, I got out of there at 4:15PM. It was a very long day.

Other than being tired (from the Benedryl) and a little tingling in my feet, I'm doing fine tonight. Except the benedryl wore off and ironically I can't sleep! It's 2AM. eek

Good News and Bad News

The good news is that today I took my 4th dose of chemo so I'm halfway done. Not only that but this was the last dose of two drugs; A and C. I couldn't spell 'em if I wanted to, so I won't, but they start with A and C. The next four doses will be something called Taxol. Which means my side effects will change. I hear the nausea ends and the body aches start. So we'll see where that goes. Cross your fingers for me. :)

The bad news is that my port is acting up again. A port is a plastic device placed under your collar bone that they can stick to inject IV meds instead of using your arm. This is what the device looks like;



The round plastic dome is where the needle is inserted for meds/blood draw. The end of the tube is placed in a vein. I had mine put in when they gave me my mastectomy surgery. So when I go in to the onc's office (which you know is quite often) they stick my port to draw blood and give me chemo. First they "flush it out" with saline to clear any clots. Then they draw blood. Afteward they put a drug in there called "hepenefrin" (at least that's what it sounds like) to keep it clot free or something, I dunno. They're not sticking me three times - they stick me once and this needle with a tube hangs there. Then they simply put different attachements on the end of the needle's tube to do these things.

Regardless, when you go in twice a week, they end up sticking this thing quite often. The doc gave me a script for a numbing cream which I apply an hour prior to going. Sometimes it works and sometimes it doesn't. Who knows. Anyway at first the port wouldn't draw blood. They could get stuff into the vein, but not out of the vein. It wasn't working correctly. Then after visit 10 or so, it started giving blood. Yay!! Here's what my port looks like from the outside;



The scar is where they inserted the device during surgery. The holes are where they've stuck the needle in the plastic dome underneath the skin. Isn't that cool? Trust me, it beats the heck out of having your arm stuck over and over. Especially if it works. However mine is giving them problems again. They said the tube may be resting against something that's blocking the blood flow so once again the blood draws wouldn't work no matter how many times they moved the needle around. So they had to go through my arm three times today. Once for blood draw and another two times to find an adequate blood draw for my chemo meds. If they can't see blood coming out, then they can't inject the AC 'cause they're not sure it's going into the vein. So here's what my arm looks like today:



LOL I mean c'mon. You've gotta laugh, right? The bruises are caused when they move the needle around inside the skin in order to find the vein. Some of you noticed that brown one on the lower right a few weeks ago when it was really large and black. I got a lot of "WHAT'S THAT FROM!?" The one on the upper left is from last week. The blue ones are from today. Okay anyway, it's not a pity party - I just thought it was interesting. I've learned a lot about drawing blood and the needles and how it all works. It's quite interesting. Although I could NEVER do it myself. I'd faint dead away I think! Although I do watch 'em put 'em in there so I know when the stick is coming. Ouch. But it's over quickly. Unless they have to move the needle all over the place. *sigh* Okay yeah, feel sorry for me. Go ahead.

So now I have to have my port looked at to see what the problem is. This worries me. I'm not sure how exactly they do that and I'm terrified they're going to open the scar and start moving stuff around and if they do I'm going to FREAK OUT. I'm definately going to ask for some HEAVY HEAVY DRUGS before they go fishing around in there if that's what they do. I hear ports often have scar tissue that grows around them and they can be very painful to remove.

So yeah. That's the bad news.

So.... what's a "good day" again?

Funny how the more I get embroiled in this stuff that my blog posts become fewer and fewer, eh? I'm sorry about that. I think it's because right now there's no new news and I don't want to sound like a broken record so I don't post as much. But again, some of you have reminded me that it's been awhile since my last post and you want to know how I'm doing so here I am again.

When I began chemo I was under the impression that I would have a "bad week" and a "good week." Next Tuesday will be treatment #4 (out of 8) and I find myself desperately seeking a good "day" let alone a good whole "week." The side effects are still going strong. Mouth sores have now advanced to aching jaw and sometimes throbbing teeth. Last night I was lying in bed and my lower teeth were literally throbbing. It was quite strange. I bought a rinse for the mouth sores and use it from time to time but wow, it's some nasty stuff so most of the time I just deal with the sores. A new side effect that I'm kind of scared to mention but I'll do it anyway, is bloody stools. Yippee for TMI! But yeah. So that's kind of alarming. Right now, I have the shakes, I get very cold easily, I cry at the drop of a hat, and I tire easily. I went to the store today, carried the groceries in, sat down and my heart was beating so fast you'd have thought I'd run a marathon!

You may remember that I visit a message board called the "Young Survivor's Coalition" which is made up of women under the age of 40 who have bc. There is a small group of ten of us that all started chemo in September and we call ourselves the "September Sirens." We keep in constant contact on the message board since we're all going through the same things at the same time and we're all young. One of us is only 23 years old. One of us is getting married this month. One of us has three kids. But we're all going through the same things and we're all having basically the same exact side effects. We all have mouth sores. We're all sick of being bald and feeling "ugly." We've all been having emotional breakdowns this week. We're all tired of chemo and look forward to the last treatment. Those of us who are married with kids talk about how tired our husbands are getting.

I don't go out too much these days but prefer to stay in and either read or do my crosstitch. I just don't have very much gumption to go out. The week of chemo I often sleep a lot. Jim's been taking care of Erik almost around the clock. The few days preceeding chemo when I feel my best I try to take over Erik's care so Jim can have a break. I'm sure Erik's feeling the strain of things too. He doesn't really know what's going on but I think he knows when mom is sick and when dad is tired. Surprisingly he's been a pretty good boy this week. He seems to be a better listener and the "no's" are decreasing. It's almost as if he knows we're at our wits end and he wants to do his part.

Anyway, this too shall pass. Chemo treatment #5 will be a totally different drug and the side effects will subsequently change. I hear the nausea won't be as bad and I'm excited about that. Hopefully my energy levels will increase. Until then, I'm just kinda hangin' in there.

"So I'll see you in a couple days then."

I think my Oncologist loves me.

She asks me to come in every other day for a visit. Each time I go in, it's a $20 co-pay. I'm thinking about telling her that I can no longer see her like this anymore. We need some time apart. We have separate lives and we need to live them and not be so codependent on each other. Plus I hate going in there. It's expensive, they always want to take blood, and they're stuck in a "Golden Girls" decorating time-warp.

I walk in and the front desk staff says, "Hello Deanna! Whatcha here for today?" And I usually answer, "I have no idea really." And I sit in a teal vinyl waiting room chair that has a large floral pattern on it and watch Regis and Kelly/Ellen/The View whilst waiting to be wisked to the lab for vitals and blood draw by the friendly lab ladies - who also love me. After lab they take me to one of the rooms to wait for Dr. Matthews. Dr. Matthews is my Oncologist. She looks like a librarian/teacher and wears sensible shoes. After about a twenty-minute wait, she asks me how I'm feeling (my answer is always "Eh") and then she tells me if my white blood cell count/blood pressure/other stuff is okay. Afterwards she puts me up on the table and checks my throat and my breathing. Then she'll look through a large pile of papers (all about me) and kind of flip through them and make sounds like, "mmm hmm" and "okaaay...". Meanwhile I'm thinking I could have used that $20 on dinner... a shirt.... some gas....

I'll get my 3rd round of chemo next Tuesday. But Dr. Matthews wants to see me before I go in so I can fork over another $20. After this round I'll have 5 more and then I'm done. The chemo is still sucking but at least they've figured out how to give me meds without putting me in the hospital. I go in for a few hours of chemo, then the next day I go in for my shot which helps my white blood cell count go up quicker, then the next day I go in for fluids and nausea meds and then I'm in sick in bed for a couple of days. This is considered my "sick week." After the two days in bed, I can get up and drag myself around and sit in a chair. A couple of days later, my "good week" starts. Then I go back for chemo and it starts over again. "Sick weeks" are marked on the calendar next to the computer so we can schedule outings/gatherings accordingly, as in "We'll have to do Thanksgiving a week early this year 'cause it falls on my SICK WEEK," that sort of thing.

As far as how I'm feeling, I'm never 100% anymore. I'm usually at about 85% on a good week. Like right now I have mouth sores and some nausea. But I'm still meeting a friend for dinner tonight and going out to see Broken Stone afterward. I can't stay for all three sets like I used to 'cause I get a little tired, but I like to get out when I can. I haven't been wearing my wig. I'll usually wear a blue bandana that my friend Jill says makes me look like a "biker chick." People stare at me or do double-takes but thankfully I'm a Leo and adore attention. Except excessive attention from my Oncologist.

Hair today, gone tomorrow.

So I was in the bathtub tonight, washing my hair and here's what I saw when I looked down at my hands:



Yeah, I yelled for Jim to come in and take a picture 'cause it was just so surreal. I just kinda sat there staring for a minute. And then I did it again like five more times and it kept happening. So Jim got my razor and shaved my head for me and now I look like Uncle Fester:



Yeah so that's me just laying down on the bed afterward, thinking things over. Notice the non-smile. I don't think I like being bald. Jim thinks it's funny 'cause I didn't mind having the buzz cut. But that's because I looked all hip like Natalie Portman in "V for Vendetta" and now I look like Uncle Fester. The only thing missing is the lightbulb in my mouth. Jim tells me it doesn't look bad. ??? Gah.

Just checkin' in...

A lot of folks have been asking how I'm doing so I thought I'd post a blog update and let you know what's going on. You may recall that my Onc is giving me an extra week inbetween chemo dose #1 and #2 so that I can heal up from all the crap I went to the hospital for a week ago. This is really cool because I'm feeling really good and instead of one good week, I feel like I'm getting two. I feel fine right now - everything seems back to "normal."

Let me tell ya something about chemo. It really screws you up. Not only does it make you physically sick but it drains you emotionally. When I was sick, it was REALLY hard for me to smile or laugh. I remember I cried a lot and this is unusual for me. But I would pretty much be sitting there and then I'd think of something and the tears would just start to fall. It was so strange. I was begining to think I was depressed and needed anti-depressants or something! But now that I feel better and I'm having my "good week" I'm not like that at all. I'm laughing and smiling like nothing happened. So if I see you during the "sick phase" and you make me cry - don't panic.

I met with my PS today about the expanders. You may recall that I WANTED THEM TAKEN OUT ASAP BECAUSE THEY'RE DRIVING ME INSANE. She told me that the pain is most likely coming from the surgical scars and swollen tissue - not the expanders at all. To prove it she pressed on them and lo and behold I didn't really feel it. So instead of taking them out, she added another 60 cc's of saline to each expander. I feel fine. She told me that I'm sore in the morning because I'm laying flat and all the blood is settling in the area and I get swollen, etc.. So I felt better after I left her office and I've decided to just live with the discomfort. And no, they didn't blow up like balloons when she added the saline. 'Cause Jim was watching and said they didn't. (Jim wants me to get squeakers in my foobs. *ronk RONK!*)

I have another Onc appt next Tuesday (which also happens to be me and Jim's 9th wedding anniversary). I'll probably have chemo dose #2 the next day and be sick over the weekend of the 12th. The nausea may be cut down this time. I got some really expensive drugs ($100 a pill!) to combat the nausea. Don't worry - my insurance co-pay was only $20! Speaking of which, my bathroom has turned into a pharmacy. I have so many bottles of drugs that I have to write on the cap in black marker what they are. For example, my Ambien (sleeping pills) are marked, "zzzz." Quick reference! (Well hey, YOU try reading all those bottles everyday!)

Anyway thanks to all of you guys for offering your support and just generally checking up on me. I'm totally digging all of this special treatment. I was watching Broken Stone last weekend at Marly's, and my friend's boyfriend actually stood at the bar for like an hour just to get me a water. So yeah, I've got lots of friends and family that are looking after me. :) Thank you, guys! *GROUP HUG*

CHEMO GONE AWRY / Plans for the future

Monday, Sept. 24th I hit an all-time LOW. My flu syptoms came back in full swing with plenty of the "best" yuckiness you can imagine. I was a wreck - just ask poor Jim who was here with me that day.

Tuesday I was feeling a bit better, shakiness aside. I refused to eat or drink much. Finally at about noon, I get a call from the Onc's office, "Uh... you forgot your chemo check-up appointment today." I had been so out of it, that I forgot totally. I rescheduled. Thankfully my Onc called me right back to check on me via phone. I told her I was having flu symptoms; fever, vomiting, diarhea, shakes, etc. She told me to come in to the office right away. I went, they took blood, and found out I was exremely dehydrated, had an extremely low white blood cell count, and toxicities that could lead to infection. I had also lost 12 lbs. So I was admitted in to the hosptial on Tuesday afternoon for fluids, antibiotics, and other meds for nausea, etc. I was in there for two days to get everything back under control. Long story short, (TOO LATE), I was discharged on Thursday afternoon and as of today I'm doing better.

Good news is we found out some things. First of all my nausea meds were giving me the shakes. I don't have those anymore. THANK GOD. I mean we were talking SILLY, GOOFY shakes here, folks. Not just minor shakes. We also went through a stream of nausea meds in the hospital that we found out don't work for me. Ativan seems to be my best bet. Heck as I type this, I'm not on any meds at all. Another thing we found out is too many Advil can be a BAD THING. I was poppin' Advil like no tomorrow for pain. This, along with the dehydration, was on its way to permanently hurting my kidneys. Thankfully they caught it in time. No perm damage. Lastly we found out my bod doesn't take kindly to that particular dose of chemo. So she's going to give me an extra week to recover, and then lower the dosage to an amount my bod can handle. HOPEFULLY.

I have some follow-up visits this week with the kidney doctor and the Onc. I'm also going to see my PS and talk about having my expanders removed. They're driving me I N S A N E. No offense Pam Anderson, but this crap isn't worth it. So I've decided to be flat as a pancake for a year. THEN I'll look at recon options.

Besides, I like being flat.

Chemo sucks so I shaved my head.

Yes, chemo hit me hard the other day. I'm just now coming off of two days worth of flu-like symptoms (body aches, fatigue, nausea, shakes) - still have the shakes and fatigue. Mom has been my Angel, coming and bringing me food - even though I told her not to. Thank god she ignored me. After failing to eat a cracker, mom comes over unanounced with a vanilla milkshake, a plain hamburger, and whatever else she thought I may be able to stomach from McDonalds. The shake and burger hit the spot and I felt better for having eaten. Then she cleaned my kitchen. I mean she CLEANED my kitchen! *sparkle* <---that was my kitchen talking. Then today she came over with soup and made me tea and proceeded to deep clean more of my house for me. Moms rock. :) So today I feel much better and can get on the computer. Typing is difficult 'cause of the shakes and I have to go back and do a lot of correcting. Grr.

After mom left, I got bored so I asked Jim to shave my head for me. This was interesting. We tried to get Erik to help but he ended up wacking me on the head with the clippers. lol When I showed him my head afterward, he touched it and gave me a kiss. Jim had me shave his head as well in what he called an act of solidarity. Awww... So here we are in all our glory:

Sippin' the Chemo Cocktail

I had my first cocktail of saline, steroids, adramycena and cytoxan today. My onc said I would only be in there for two hours. HA! I got there at 9AM and didn't get out until 1PM. (Mental note: eat a real breakfast next time.) Basically they take you to a large room filled with lazyboy chairs. There's TV's, snacks, drinks, etc. I took a book and my MP3 player. I wish I had taken my cross stictch. There was no pain involved really. The drugs are given via IV through a port in my chest. My onc is concerned about my blood pressure because apparently it's rather high. Don't ask me what it is 'cause I have no idea. I remember today that the lower number was 107 but I can't remember the top number. So she gave me a script for blood pressure meds.

So right now I've got drugs galore. I could open my own shop; D's Drug Deluge.

I'm told that side effects won't happen until tomorrow and can last a couple of days. I know one thing that's driving me nuts already and that't that I keep peeing my pants. I was told to drink tons of water 'cause it helps flush this stuff out of you but all it's doing is making me pee myself. I went to the bathroom, sat down and three mins later - voila. Had to change again. So now I'm wearing a pad. Loverly.

We're epxecting guests tonight so I should try and get a nap in while I can. This ativan is going to kick in any moment. I'll update tomorrow. I see my PS in the morning for a consulation (keep expander? remove expanders? hmm) and then I have to go back to the onc's office for a shot to raise my white blood cell levels. For right now I need to stay away from all folks with colds and and the flu. And guess who has a cold? JIM.

DRUGS

Saw the onc today. First chemo appointment is Tuesday, Sept. 18th at 9AM. She said the first four appts should only take 2 hours. She gave me three scripts; Advaran to help me sleep, a creme to numb the chemo port in my chest, and another drug to help with nausea after chemo starts. Eh, at this point I'm just ready to get started. I'm the only person on the bc message board that is looking forward to going bald. The nausea I could do without, but some folks have told me that they were just fine. Cross your fingers for me!

I'm also have second thoughts about reconstruction. I was due to see the PS next week for my first fill. But I changed it to a consult instead. I may have the expanders removed and consider reconstruction in a year or so after radiation. It just depends. I like being flat, but I'm not sure I want to be concave. I just don't think I can live with these expanders for a year. They're too hard and uncomfortable and I'm having an awful time sleeping. Hopefully this Advaran will help with that. Still I'm going to look at other options.

Last Saturday me and my friend Lisa went to see Broken Stone (BROKEN STONE ROCKS!!) at a benefit at the firefighter lake club. Here's a picture of us having an AWESOME TIME;



Notice my white knuckle grip. That's because my expanders were bugging the hell out of me. Still, it was GREAT to get dressed up (yes, that's dressy - I have eye shadow on for god's sake!) and get out of the house. As always, the band did a great job, and let's face it. The bass player is freakin' H O T.

So I'm sittin' there listening to the guys, and this tall cute fireman walks up to me, gives me a hug, and asks how I'm doing. I was like, !??? "Fine, how are you?" Later another cute fireman comes up to me and starts talking and kisses my hand and tells me he hopes I'm doing OK. !?? Later another cute fireman (are you noticing a pattern here?) comes up and starts talking to me and later dances with me. At this point, I'm thinking to myself, "CANCER ROCKS!" Turns out Jim told the guys he worked with and they told two friends, and so on, and so on, and so on. Hey, whatever works. BRING ON THE HUNKY FIREMEN.

Break time is over. Or just about...

It's been a week since my last blog and a few things have happened so I've decided to update. A lot of folks ask how I've been doing. It's kind of up and down. On one end of the spectrum you have the physical feelings and on the other you have the emotional. Physically I'm getting better. I can now dress myself and my showers don't take so long! I'm driving but not too much. The seat belt bugs me so I use a tiny pillow but the dull pain is still there. I have to sleep on my back still and it's driving me C R A Z Y. But I take vicoden at night and it eventually knocks me out. The range of motion is really improving in my left arm. The node arm is still at 90 degrees but it's getting stronger. I'm still tender and sore and as my step-dad found out last weekend, if you run up to me to hug me - I'll flinch. Emotionally I'm doing pretty good. I hit a bit of a bad spot last night and started writing this horrific vent email from hell to Lisa. But she'll be glad to know that before I could send it, my internet crashed and it vanished. I felt better having written it though even though it never got sent. And shortly thereafter, the vicoden kicked in and I was able to sleep like a baby.

Here's me in a good mood:



Notice how flat I am. I love it! I love being flat as a pancake. And I'm not even entirely flat. And my belly is HUGE. But I still love it. This is me smiling because my ginormous boobs are gone and I don't have to wear a bra. This was taken about a week ago. The tape over my port is gone now. That's what I've been doing each night. Slooooowly removing all of the surgical tapes. So this is what my bathroom looks like:



I take off about five tapes a night. There's about 20 more to go. My boobs are totally 100% numb but the skin underneath is not. There's also this part of me that is scared to remove too many for fear of the expanders falling out onto the floor. Eww!

Went to see my PS this morning. She took a quick look and was pleased with how the recovery is going so far. She was sad to hear about the need for radiation therapy however, and said we'll cross that bridge when we come to it. She did say that it will be six months to a YEAR AFTER radiation is complete until we can do the implant switch-out. This really bummed me out. I asked her if getting expanders so soon was a bad idea. She said we could always take them out if I wanted, but we may as well leave them in for now and let the skin stretch out. I figure since I've got until January to expand them, that I can take my time and won't be in so much pain. But expanders suck, folks. They're very hard and kind of heavy and make sleeping on my side impossible.

So I got a refill on my vicoden and took off. I have my first "fill" appointment with her on Wednesday, the 19th.

NEXT UP: Onc visit on Monday to find out about chemo. Since I'm still tender, sore, and leaking, I imagine she's going to put chemo off for about another two weeks. But we'll see. I'll let you know what I find out.

Meanwhile I'm going out to see husband's band Saturday night for the first time since surgery. Also I'll be taking a teacher certification test that morning. So cross your fingers for me. Fifth grade math is HARD!

Finally, a much needed break.

It's been a busy two months since I first found out about all this stuff. My July calendar was busy with tests and consults while August has been busy with more doctor appointments, additional tests, surgery, and consults with new doctors.



Today I met with my radiation doctor, Dr. Wynstra at St. John's who will be taking care of me after chemo. He's a very nice, THOROUGH kinda guy. Yestereday afternoon he met with my surgeon and my oncologist along with other surgeons, etc. who decided as a group what would be the best course of action at this point. Unfortunately he couldn't tell me when chemo would start since I guess that depends on how quickly I recover from surgery. I have an appointment with Dr. Mathews, my new Oncologist, on Sept. 10th and she'll tell me the game plan then.

As for right now, I'm going to take a deep breath and enjoy a whole week free of doctor appointments. Wheee! :)

As for how I'm feeling, I'm definately healing up. I'm not as weak as I was, and I can lift my left arm up past 90 degrees. I'm trying to avoid taking pain meds until I'm ready to go to bed, because they knock me out and make me better able to sleep lying on my back all night. (I'm a tummy sleeper!) This morning I took a shower all by myself. Jim still has to help me get dressed because of my limited arm movement. I'm getting to the point where I can lift myself out of bed as long as I'm propped up a little bit.

Slowly but surely I'm getting better. If anything changes, I'll blog again. Otherwise, don't expect to hear anything until after September 10th when I get my chemo schedule.

As always, thanks for reading. :)

Changed Oncologists or "Happy Tuesday"

Changing docs is getting to be a pretty ordinary thing around here. In my old life I would have never thought of changing docs. I thought you picked one out, they naturally sucked or maybe you got lucky and had a half-way decent one with a good sense of humor, and you stayed there 'cause why not? Now I realize, if they suck butt - SWITCH. It takes a couple of phone calls, and a consult visit, and you're done with the last bozo you had. You'll recall I switched surgeons because surgeon #1 wouldn't do "unnecessary surgery" and instead just prefered that I go through all this crap over again in 7 years if it came to that. Afterall, what else did I have to do with my time? You may also recall that my Oncologist was Mr. Rogers incarnate and her staff was comparable to the folks that work the late afternoon shift at Hardees. So last Thursday I called my surgeon's nurse, got a couple recommendations for a new one, called my insurance and their office, set up an appt and went to meet her today.

Her name is Dr. Fran Matthews and she works at Central Illinois Hematoloy Oncology on Madison. I went to see her today and all I can say is "eh." The facility is nicer than Holzer's (Springfield Clinic on 7th), the staff seem more on the ball (called me back within five hours with an appointment time! *GASP*) and while Dr. Matthews has the personality of a lamp post, she's likable and seems like she knows what she's doing. I think this one's a keeper.

She was able to get my pathology report from surgery and told me some stuff that I'm sure my surgeon meant to tell me on Wednesday's visit. Such as Dr. Peralta removed 25 lymph nodes but only two seemed cancerous. (boo) She also says there may be a chance that some of the tumor was left behind in the incision and must be zapped with radiation. Which brings me to the third bit o' bad news; I need radiation. Yuck.

She gave me a run down of my probable treatment plan that will start in a few weeks when I'm healed up from surgery. 16 weeks of chemo (adriamycen, cytoxan, taxol), followed by 5-6 weeks of right chest wall radiation, followed by tamoxifen pills for five years. Reconstruction will be going on through chemo and radiation and then after radiation is done, the implants will replace the expanders.

Tomorrow (Wednesday) I go for a post-op visit with Dr. Peralta (surgeon) who will explain the path report a little more and based on that will decide on the complete follow-up plan. I'll blog more as soon as I know the plan.

Thursday I meet Doc #4 which will be my radiation guy; Dr. Wynstra at St. John's.

If you'd like to know how I look, here ya go:



Nice, eh? Didn't you all wanna see me in my undies? I also have naked pics for my own records and will take new pics after each fill up through reconstruction. They look a tad bit lopsided - there's also a huge diagonal dent/fold in the right side from when they bandaged me up but it should flatten out. Jim thought it was a scar, it's such a deep fold. But I imagine it'll flatten out as time goes on and the expander is filled. I have a scar running from where the nipple used to be, down to the underside of each breast, and then a scar running across the bottom of each breast that you can't even see unless you're looking up from underneath. They did a really good job. The drain sites are leaking less and less. Soon I should be able to do away with the guaze. I still have a lot of inflamation on the sides especially that should go away soon. Yes, it's still sore and I'm still on meds and advil. Those of you who didn't know what my boobs looked like before, they were a large C cup. Right now they're an A but most of that is inflamation. I don't really want to go back to a C cup. I'd like to go to a large B, but we'll see how things go. Basically my PS says she'll fill them until I like the size and that's when we'll stop and do the replacement (after radiation).

It was a happy/sad moment when I got rid of all of my old bras. That's the cool thing about implants. PERKY 20-YR OLD BOOBS FOR LIFE. No bra necessary. Yippee!

Pictures! Wheee!

Sorry about the serious lack of blogging lately. Our computer broke down Friday night and we just got it back. Unfortunately there are still a few bugs with video so my picture slideshow isn't working. I'll just post a few of the pics instead.



This is me in the pre-surgery holding room at about 9am. Jim was there along with my dad, mom, and step-dad David. The kept me company and the mood was pretty light. I was in there for an hour or so.


They're getting ready to roll me in to surgery and this is me with my favorite doctor, Dr. Bergman. She's my plastic surgeon. I was doing fine - not scared. Right before they wheeled me in however, my mom started to cry and then I started to cry. LOL Thanks ma.



Whooo SEXAY! This is me right out of recovery at about 6PM or so. I was really groggy. My first thoughts when I came to in the recovery room were of these two guys jabbering. I think they worked there. I couldn't open my eyes, but I remember asking them, "What time is it?" One of them said "About 5:30PM." Which just goes to show you, I can pick up strange men in my SLEEP. That must be what that thumbs up is about.


I think this is a pretty accurate picture of how I felt that first night in the hospital.





Okay now I realize how much visitors rock when you're stuck in the hospital. That's my sis-in-law Erin and my little brother Ty in the first one, my ma in the second one, and Lisa on the bottom. My dad spent the first night with me and Jim was with me during the daytime. I was there two nights and got to go home on Thursday morning.


Here's a shot of me getting dressed to go home. Whoooo hoooo sexay baybay! You may be thinking, "Wait. I thought they cut your boobs off." They did. I have expanders in there with 100cc's of saline, plus a ton of guaze and 12 ft of Ace Bandage CORSET FROM HELL. Even though there's a smile on my face, I can barely breathe. I'm also holding my three drains. I meant to take a picture of them side by side 'cause they were kinda cool. One was red, one was burgundy and the other was orange. It was like my own little blood and guts rainbow!


When I got home, I saw that my mom had decorated my bedroom with roses, new pillows, fresh towels, a magazine, and a tub full of stuff ranging from an energy drink to a new pair of scissors. It was really cool. She told me that my Aunt Penny helped with the bucket and she should know what to put in there since she had bc too. Thanks guys!

Yesterday my friend Jill gave me a haircut and washed my hair in her salon sink. I felt TONS better after that 'cause my hair was like this matted mass of goo. Thanks Jill!

This morning I got my ACE BANDAGE CORSET FROM HELL removed by Dr. Bergman. She also removed the drains. I didn't know it before (THANK GOD) but this was basically her ripping them right out of my skin - dried up scars and all. I cried like a baby! I swear I howled so bad that I was sure that her entire waiting room left while I was in there. She layered guaze over my drain sites and put a velcro compression bra on me.

Later I'm going to take my first shower in over a week with Jim's help. Incidently, Jim has been an AWESOME HELP. He's taken off work to wait on me hand and foot and he's had to take care of Erik all by himself. I'd like to thank Erin and mom for bringing over food so he doesn't have to cook. I can't raise my arms above my head and my incisions are still really tender. I take vicoden and Advil for pain relief. The closest I can think of to describing "how I feel right now" is to compare it to a flu. Achy body, loopy head, a touch of nausea, lack of appetite, sporadic sleeping - that sort of thing. But sometimes I can get on the computer, read, or watch a movie.

In closing, I'd like to leave you with this image.

Back from the hospital.

Surgery went well and I had a ton of support from family and friends while I was there. The only sucky thing that happened was that I did need to have all of my lymph nodes removed from my right armpit. I have to be really careful with that arm so it doesn't swell. I've been taking vicodin (sp?) for the pain. It hurs the most when I lift stuff and get up from a laying position. Erik started school today so I still haven't seen him since I went in.

The first night at the hospital my dad stayed over night with me and took care of me. I thought that was really sweet. Jim is taking good care of me - and my mom even came over and decorated my bedroom with roses, new towels, magazines and a giant goodie basket. Everybody's been really awesome and I wanted to thank you guys again.

I took lots of pictures - before and after shots, and I got a couple pictures of my doctors too. Jim just left to fill my vicoden script and drop the camera off for developing so hopefully I'll have those images to share with you soon. Nothing too grodie- don't worry.

Right now I'm bandaged up really tight all the way around my chest. I have three drains that need to be emptied and recorded which Jim is going to help me with. Having a husband who's an EMT is very helpful!

The drugs make me kind of woozy - in fact I'm kind of falling asleep as I type this, so I better go. I'll blog more later and post pics soon.

Oh and regarding the kidney/ovary issues - - the right ovary has a cyst in it which is no big deal, she said they couldn't get a good image of the left one (???) I asked her which one we were concerned about in the first place and she couldn't tell me. Instead she said, "I was just told by Dr. Holzer to call and give you this report." ??? Then I asked about the kidney results and she said "What kidney results? There's nothing here about the kidneys." I kept my temper in check and finally she got the bright idea to talk to the doctor and get back with me. That was a couple hours ago.

Right now I'm wondering if I can switch oncologists. The doctor isn't bad but her nurse is and the admin staff can be pretty rude and unhelpful. Since I'll be dealking more with the nurse and admin, I'm kind of leary about staying with Holzer.

Okay I have to go to sleep now.

Oops.

I had my SNB today. My mom took me and gave me some Xanax to calm me down. Problem was, I took too much, and promptly came home and slept. I had hoped to get some more done with the house prior to packing, etc. But I just woke up (it's 9:20PM) and I feel like I just got home from the bar after having 20 drinks. So I'm trying to pack. But really I may just go back to bed soon. The SNB turned out to be nothing but one shot that stung a little. It was totally no big deal at all. But my night hasn't been that great trying to get over this Xanax that is totally still there and hasn't gone away yet. Can't type anymore. Have to pack and go back to sleep. I'll blog when I'm able. If everything goes well, I should be able to come home from surgery by Wednesday afternoon. Hopefully I'll be up to blogging by Thursday. I'm not too worried about surgery right now, except I'm not too worried about anything right now except trying to pack.

ps - one xanax should be sufficient. goodnight.

So I got this idea...

If my hair has to go anyway, it's going to go out with a BANG. Besides, I wonder how many pink-haired chicks get bilateral mastectomies these days. Okay, in Springfield.

Thanks Jill, for helpin' a girl out.

"So what's been going on?"

A lot of folks have been asking me this question after various doctor appointments so I thought I'd catch everyone up. Mostly they're concerned about the results from the kidney/ovary ultrasounds and I haven't heard anything yet. I believe this is because I keep failing to fill my bladder enough for the ovary ultrasound and keep leaving and resheduling. (Try no. 3 is Thursday, the 16th at 11:30. Wish me luck.) I've decided that out of all the appointments and all the tests I've had to do - filling my bladder just perfectly for this stupid ultrasound has been the most difficult and doesn't even have anything to do with the breast cancer.

My latest project is to sew something similar to the picture here on the left. It's called a "Softee" and the genuine article costs $58. It's a camisole with a "kangaroo" pocket on the inside and loops sewn in so that your surgery drains can be contained under your clothing. (See the drain?) I went to Walmart today and bought a cheap nightgown and camisole and I'm going to rig something similar. One to sleep in and one to wear out. Should work fine and cost a lot less.

Went to see the plastic surgeon (PS) this morning. She basically checked "the girls" out again, measured me for expanders (see previous blog entry titled "A Snag" for expander info), and talked a little bit about the part she'll play on the day of surgery. The day before surgery I'll go to the hospital and have some sort of radioactive stuff injected into me via IV for surgery the next day. And then here's the day of surgery scoop:

_______________________________
THE DAY OF SURGERY SCOOP
I'll be checking in at the hospital at 6AM (yawn). Surgery is scheduled for 10AM. Prior to that my PS will be coming in and marking me for my expanders. I imagine my surgeon will be popping in to say hi at some point too. Then the anesethiologist will be coming in and prepping me for the general. Then I guess I get wheeled in, knocked out, and the surgeon will perform the double mastectomy and biopsy that main lymph node under my arm pit. A pathologist will examine it onsite to see if it has cancer in it. If it does, the surgeon will remove more nodes just to make sure she gets it all out (which means I'll probably need radiation later after chemo - boo!) After the surgeon does her thing, I'll have a small scar under my armpit with a drain (if the nodes are removed) and a scar around the down from where the nipple used to be and possibly along the crease underneath where the breast used to be. After she's finished, the PS will step in and she'll put the expanders in through the surgeon's incisions - so no additional scars. She said she would fill the expanders up as much as they would go without stretching the incision too much and then she'd wrap me up with an Ace bandage tube top. (She's got a pretty good sense of humor.) I should have a drain coming from either side of chest - so that's a total of three possible drains. The surgery should take approx 3 hours.

After the surgery is over, I'll be taken to recovery for awhile. Then I'll be taken to my room. Jim and my dad will be there the whole time and my mom is coming in a little later. I've asked them all to be there when I wake up. I'm going to need some positive vibes coming my way after! The next morning the PS is going to come check out the damage. If everything looks good and I'm doing well from the general, I should be able to leave that day. She told Jim (he went to the PS consult with me today) that he'd be waiting on me hand and foot for at least four days after the surgery. [INSERT EVIL LAUGHTER HERE]

____________________________________

I have a post-op visit with the surgeon a week after surgery, and I'll go see the PS two weeks after surgery for another fill. The expanders will be rock hard and will give me discomfort AND they'll look funny. She said she'd give me some pain pills. They're going to continue to be uncomfy and funny looking until they're replaced with the implants AFTER CHEMO AND AFTER ANY RADIATION. So we're looking at *cries* late January at the soonest.

I've heard that after the tumor is removed, the surgeon's team looks at it and decides from there what kind of chemo and/or radiation I'll need. So more on that after surgery. Right now, my oncologist has told me chemo will most likely start the week of Sept. 10 but that can change.

As for "how I'm doing" psychologically - I'm fine. Yes, I'm a little nervous about surgery but I've already planned on asking them to give me something to calm me down once I get there. I've talked to so many other gals that have gone through this on that bulletin board Julie told me about. I even talked to one gal who went through the same surgery and she's a recovery room nurse! She told me what kinds of drugs to ask for, etc. It was awesome. They've helped me with packing lists for surgery day, and clued me in to the "Softee" idea. I'm getting major support there and I visit that board quite often. (What did we do without internet???)

My dad was concerned that I was having physical pain - but there isn't any right now. I feel totally normal. The pain won't start until after surgery, and then during expansion. Jim has talked to the Chief at work who was really cool and told Jim to take as much time as he needed to help. Jim has taken steps to use the family medical leave but also has plenty of sick days he can use to help me with Erik.

That's all I can think of right now. If you have other questions - leave a comment and I'll answer there.

Thanks for reading! Sorry this sucka was so long.

Ultrasounds, Schedule and a Favor

Jill asked how my ultrasounds when on Friday and I thought I should blog. Apparently when you have an ovary ultrasound you need to have a completely full bladder. Problem was, I forgot about the appointment until 20 minutes before I was supposed to be there! So I was guzzling water on the way to try and fill my bladder, but it wasn't enough so they had to reschedule it. Boo! She did manage to get the kidney portion done however, so that's something at least. My oncologist will be calling with the results as she gets them.

It seems like every week since my diagnosis I've had a lot of doctor appointments. So much so that when the weekend roles around and I'm not rushing to appointments or waiting for phone calls from doctors that it seems strange! Here's my schedule and I'm going to throw some fun stuff in there too so you guys know I'm not just sittin' at home wallowing in self-pity (that comes later):

Sun Aug 12: Daughtry concert at the fair
Mon Aug 13: Consultation with new surgeon re surgery (SIU)
Tues Aug 14: Ovary Ultrasound (Spfld Clinic on 7th)
Wed Aug 15: Consultation with plastic surgeon re surgery (her office behind TGIF)
Wed Aug 15: Lisa's Spa Party
Tues Aug 21: Surgery

There will be one to two post op visits with the surgeon after surgery, and then in September I'll be starting chemo.

Again thanks to everyone for reading! All of you have been asking if there is anything you could do to help and now there actually IS something you can do to help me! You can go to http://illinoistimes.com/gyrobase/ and vote for Broken Stone as best cover band and rock band in Springfield for 2007! Just click on the pic in the right menu that says "BEST OF SPRINGFIELD 2007 - CLICK TO VOTE." You don't need to vote on every single category - I think you just need to fill in ten blanks for it to work. Imagine when I'm all laid up on the couch, bald, nauseous, and wallowing - - but then husband brings the Illinois Times to me and I see that his band has won best band! WOW! What an instand PICK-ME-UP!! :)

Switched surgeons.

Dr. Puralta with SIU has agreed to give me the bilateral mastectomy. In addition, there will be less scarring, and she's going to actually test the lymph nodes to make sure they're positive before removing them, unlike Dr. W who was just going to take them all out. (The more lymph nodes you can keep, the better. They're under your arm pit and drain fluids from the breast. If they're removed the result is numbness and a possible swelling disorder so you really have to baby that arm for life.) Dr. Puralta was surprised that Dr. W would not perform a bilateral and her nurse was just as shocked. They each asked me why he wouldn't do it. I couldn't really give them a straight answer because I'm not sure myself.

So I'm feeling a lot better about things now. I so didn't want to be lopsided for a year until reconstruction could be completed and I would have been FURIOUS if I would have had to have the other one removed later down the road and go through treatment all over again.

There are a couple of issues with the bilateral though. (Ahh, why can't everything just be perfect?) First of all my surgery date may be moved back because this procedure will take longer for both docs (surgeon and plastic surgeon). There's a possibility of staying longer in the hospital and recovery will take longer. The plastic surgeon's office warned me that my insurance may not pay for all of the reconstruction on the left side since the bilateral is not medically necessary. They would have had to pay for the breasts to made symetrical so maybe they will. The surgeon's office will let me know for sure. They'll also be calling with the new surgery date. I'll be keeping the same onocologist (sigh) and the same plastic surgeon (the surgeon assured me that she's really good so I've got no problem sticking with her).

The upside of all of this is that when I wake up, it will just seem as though I've had a breast reduction rather than an amputation! Also, unless I need radiation on the affected right side later, the plastic surgeon should be able to eventually give me perfect, plastic, barbie boobs. Remember the expansion process and replacement takes months. While there are disadvantages of having fake boobs (no sensation, hardness, replacement every 10 years, foriegn man-made materials in your body) I won't have to wear a bra if I don't want to and when I'm 80 years old I'll still have the breasts of a 20 year old.

I'll update when my surgery date is confirmed.

By the way, Jim is home and I have brand new fresh flowers on my coffee table. :)

Did I say "Progress?" I meant to say "Snag #2."

So Jill's aunt had a bilateral mastectomy awhile back which means she had both breasts removed. She emailed me the other day and implored me to go see the surgeons at SIU because they can do surgery with minimal scarring. Since I already had my surgery date and was relatively sure that I was going to get a mastectomy at that point, I shrugged it off not really caring about scars later.

Then I went to that Young Survivors Coalition message board that Julie told me about and started reading all of these women's stories. The more I read, the more I thought that a bilateral mastectomy would be better for me in the long run than a single. First of all I won't have my genetic test results until who knows when because the doc office is currently fighting with my insurance company over its medical necessity. Secondly my reconstructed breast will never match my natural breast. Third, if I'm going to have to have another mastectomy later becuase of positive genetic testing or just more bc, then I'd have to go through surgery and therapy all over again and the odds get higher and higher as I get older.

So I called my surgeon and asked him about a bilateral. AFter some discussion he said he wouldn't do it. To him it's unnecessary at this time, it's extra recovery time, it's a huge paper trail, the insurance won't pay if it's not medically necessary, blah blah blah.

So I went back to the bulletin board and told all of these women who have had them what he had to say. All of them told me to find a doctor who shared my point of view. A lot of them seem to have had bilaterals because they chose to and their doctors did it for them with no question. While they say recover is longer, they're happier they did it and it's over with. Meanwhile the gals that answered that had a single mast all told me what I feared. That their natural breast did not match the new one. One gal even said she was just anxious to have it done and at the time didn't know enough to stand up for herself and fight for what she wanted which was a bilateral.

To make a long story short (TOO LATE!), I phoned those doctors at SIU that Jill's aunt had recommended and I'm going to see one of them tomorrow morning for a 2nd opinion. I need to ask this doc about scars afterward and if she performs bilaterals w/o as preventative for cosmetic reasons if nothing else.

I'll update once I get back from that consult.

Progress

I have a surgery date! It's Tuesday, August 21st at 9AM at Memorial. I'll be having a modified radical mastectomy of the right breast with an expander placed to begin reconstruction. The expander will result in a little longer recovery but hopefully I'll only be in the hospital overnight. I'll leave with a couple of drains that need to be monitored and I'll have to take it easy for a week following surgery - no lifting, no driving - but after that I hope to be up and running. Tentatively chemo will begin the week of Sept. 10th but more on that later when I know for sure.

The surgeon was actually pleased with my choice and didn't give me any hassel. I'm glad that the treatment seems more solid to me now and that soon I'll be on my way to recovery.

Jim is coming home tomorrow night too so I'll have my rock back. :) Thanks to all of you guys for your support while he was gone. Mom, Dad, Lisa and Jill - - these last few weeks would have sucked major without you guys keeping me busy. Julie thanks for your advice and the website - it's really cool.

I'll post again after I get the results from the kidney/ovary ulatrasound and let you guys know what they found out. Cross your fingers for me. The last thing I need is stuff going on with other organs at this point. Anyway, look for another post after Monday the 13th. Thanks for reading.

I'm very frustrated right now.

I've been waiting since last Thursday for THE BIG RESULTS which would answer all of my questions and help me know exactly what to do surgery-wise. But that's not what happened. All last week they did tests. They took blood which I thought was for my genetic testing to see if I had the mutant gene, did a heart test (echocardiogram), CAT Scan of the pelvis, chest and abdomen to look for anything fishy, and a bone scan to see if the cancer was in my bones.

The bone scan turned out fine - no cancer in my bones. Heart test was fine - my bod should respond okay to chemo with no problems. CAT Scan showed some dense material in my kidney and left ovary. So I'll be getting an ultrasound to check that out on Friday. She said she was pretty sure it wasn't cancer but just wants to "dot all the i's." To me that's her way of saying "Crap it's probably cancer but I don't want to say anything." Whatever. When I asked about the results for the genetic testing she said she didn't know that I'd had blood taken for that yet (???) and checked with her nurse who said the folks that do the test are still checking with my insurance to see if the test is covered. !! Apparently the blood they took that day at her office was to check on liver and kidney function. GAH. So yeah I'm mad about that since surgery was going to be based on those results.

I just feel like the oncologist office is wishy-washy right now. And when you have this many doctors (surgeon/oncologist/plastic surgeon) they don't or won't or can't talk to each other to find out what needs to be done. It's like they're all on different pages. So I'm really frustrated. Here my mom left work to come meet me there and I feel like we didn't do anything new.

I did get a better idea about the time table for treatment. At this point I'm going to have a mastectomy and be done with it. I JUST WANT TO GET THIS BALL ROLLING. She said if I have the surgery on the week of the 20th, then chemo would start on Sept 11 and and go through December. Radiation would start in January. I know you guys are all tellin' me not to worry about school and work and stuff - just to concentrate on my health - but realistically I can't help but look at the big picture. I need to know how soon this stuff is going to be done so that I can know when I'll be going back to school and get my life back on track. That being the case I told her "no" for clinical trials regarding chemo. I need them to know what they're doing so I can get going here.

Wednesday morning I'll be visiting the surgeon to discuss the surgery. He's going to be antsy when I tell him that I insist on having the expander put in at the time of surgery and he'll use the scare tactic of "possible infection" but I don't care. I want it done right away so I dont' keep having to go back for surgeries. I've got the time to recover now since I won't be going to school this semester anymore.

Anyway, that's what's going on. I may look into finding a support group or something so I can vent and just to hear what the other women had to go through. I wish there was a group of younger women to talk to who have young children and are trying to go to school, etc. rather than the older set whose children are grown and have different lifestyles.

Sorry for venting. I'm just really frustrated right now. I'm afraid my poor surgeon is going to get an earful tomorrow. But I feel like the only person willing to actually put their foot down is me. If it's really "all my choice" then here ya go. Like it or lump it, doc.

A Snag

Just when I thought I had everything figured out (kind of) - it turns out that I don't (at all). Dr. W. had told me that after surgery I would be up and running (so did all the documentation I've been reading) and I thought I'd still be able to have the surgery and start chemo and still go back to school on the 16th. But now I've hit a snag.

After meeting with my plastic surgeon today (Dr. Beth Bergman) we decided that if I have a mastectomy, my best bet would be to have a tissue expander inserted at the time of surgery. She told me there would be drains and I knew this. I told her I had an image of drains being duct-taped to my body as I'm student teaching. She told me that when you have drains, you are not supposed to work. I asked how long the drains are there and she said they could be there as long as three weeks depending on how many there are (1 or 2). But with the added tissue expander in there, the healing would take a little longer and I would be tired and wouldn't want to work for that long anyway.

There is still a small chance that I will have a lumpectomy. Otherwise, I think I'm going to have to put off school until January. This makes me a little anxious as I was really wanting to get student teaching out of the way. I would rather student teach, graduate, have my certificate and then wait to get a job until next fall, then take a break and have to student teach. It is my fear that I'm going to forget a lot before January if it's not fresh in my head. While student teaching there are many projects/reports that must be completed for certification. I'm scared I'll forget how to do them and by then my fellow-students will have jobs and will have forgotten themselves. This makes me rather sad.

But I just don't know if I should attempt it with the surgery recovery, tissue expansion, and chemo. So here lies my problem. Before I call ISU, I'm going to wait until Tuesday when the oncologist gives me all my test results and we choose a surgery and treatment. The waiting is starting to drive me a little nuts.

In case you are wondering what a tissue expander is, it's basically a balloon that is inserted in your chest muscle and "blown up" with saline a little bit at a time over a period of months to expand the tight skin and make it ready for an implant. Here's a visual:



Yes, I could have the surgery and wear a prosthesis until January and then have the expander put in. But if I have radiation treatments, my skin will be even tighter and reconstruction becomes more difficult.

I just don't know what to do and it's really bothering me. I just want someone to tell me what to do and if I can go to school or not.

Testing... 1,2,3...

I had my echocardiogram today. It was a sonogram and only took about 20 minutes. I got to see my heart beating with the little valve just a flappin' away. I have palpitations and she asked me if I drank lots of coffee - and I told her no, lots of soda, and she said the caffeine will do that. I got the rest of my appts scheduled too. Some of you have been asking about surgery and how I'm doing and when Jim gets back, etc. So I thought I'd give you a visual. (Yes, I'm just that good.)

Tuesday July 31: Echocardiogram
Wed. Aug 1: Consult with plastic surgeon re: reconstruction after surgery
Thurs. Aug 2: Bone Scan and CAT Scan and then pick up Erik from camp
Friday - Mon: Try not to kill Erik
Tues. Aug 7: Meet with Oncologist who will go over the results of all the tests - decide which surgery to do.
Wed. Aug 8: Possible surgery date
Thurs. Aug 9: Jim gets back home at 8PM

Ironically Erik's primary babysitter is leaving for Cancun right after camp and won't be back for awhile. My mom has offered to help with Erik and I have a back-up babysitter too. Thanks for your concern and if you have any questions, just leave me a comment and I'll reply there.

As for how I'm feeling right now or if I feel "alone" since Jim and Erik are gone - I'm doing really well. These tests are painless. I just hope I "pass" all of them. I never was much good at test-taking. I'm really enjoying having the house to myself. I'm sure Erik is having a lot of fun at camp and Jim calls me at least twice everyday from Scotland. He tells me he's having a good time with the girls and that they seem to have formed a small baseball team with some neighborhood boys. At this point with my tests and consults spread so far out - he may be here for surgery or at least the recovery aspect. Remember, there may be a chance that I do the chemo first and then the surgery at a later date. I won't know for certain until Tuesday, August 7th and I'll be sure to blog again then and let you all know.

Until then, I'll leave you with a very technical image of the CAT Scan procedure:

Pincushion

So when my ma first found out I had bc, she bought me a tiny plant called a pincushion.



Isn't it cute? She told me that since I was going to be a pincushion soon that I should have it. And I laughed at the time but man, she wasn't kidding!

Today I met my Oncologist. Her name is Karen Holzer. An oncologist is someone who takes care of you after your surgery and sets up all the chemo/radiation/hormone therapy. She was a pretty nice lady. Unfortunately, she didn't help me make my choice. Well, she did help rule out one of them. She said not to do the biopsy and then a "blind" lumpectomy. She said it would be better to do chemo/radiation first, shrinking the tumor and then having the lumpectomy. Otherwise she said to get the mastectomy. She suggested I have genetic testing that Julie mentioned in her comment, so they took blood for that and some other tests. On Tuesday I'll have an echocardiogram to test the strength of my heart since I have a heart murmur. At some point next week I'll also have a CAT scan and a bone scan to double check that the cancer isn't anywhere else. Yup, pretty soon I think I'm going to resemble a larger version of that tiny plant that ma got me.

If the genetic testing shows that I have a mutant gene that caused the cancer, then it's likely that it will show up in the other breast at a later date and that's what Julie meant when she said I would have a double mastectomy. It's basically a preventative measure. So we're going to wait for all the test results (hopefully I'll know something by the end of next week) and then make the decision about the surgery.

At this point, I'm thinking Jim may just make it back for the big day afterall.

She was nice enough to make copies of my report for me and put it all in a binder for me to take home. She also gave me a book called "Be a Survivor; Your Guide to Breast Cancer Treatment." It has lovely graphic images in there of breast reconstruction. Thanks Doc. ;)

I was two hours in the oncologist office and by the time I left, I decided to go through the McDonald's drive-thru for lunch. Instead of handing her my credit card, I handed her my insurance card by accident. Yes, I'm serious.

Support systems rock.

When I came up with the idea to blog, I didn't actually think anyone would read it. Surprisingly I got quite a few emails and myspace messages right away that let me know that not only are you reading, but you are glad that I am doing this. I wanted to thank you for the kudos. I suppose that while this makes it easier to explain what's going on to everyone all at the same time, it also makes it easier on you because you don't have to ask all the time. Double-whammy goodness!

I was telling my friend Ed that it's funny how something like this can bring folks together. He asked if he could tell a couple of our mutual friends that I don't see too often. I told him that was fine. At first I'd hoped to sweep this under the rug and just tell a couple friends and family. Then I realized that it might be a tad bit awkward if I saw them later while I'm bald and they're mad that I didn't tell them. In addition, friends and family have become an awesome support system. My friends have been amazing - wow. I haven't even had my surgery yet and Angie's wanting to freeze food and bring it to me, Lisa's offered to make emergency milk-runs even though she lives ten minutes away and my friend Jill has has phoned everyone she knows to find out the best doctors in town. My dad was coming over every single day as my time on this world was evidently nearing an end, until I told him to chill out. My mom has gone to see the surgeon with me in place of Jim and came armed with five pages of printed questions she got off the internet. They're both doing a bang-up job of taking care of Erik for me when I need help while Jim is gone.

Anyway, I just wanted to let you all know what an awesome support system I have, and to thank you. I've opened up the comments to allow anyone to post without registering to blogger.com. Feel free to leave a comment, introduce yourself, comment on other people's comments, yell, scream, cry, sing - whatever. It's all good because we're all in the same weird boat. :)

In a Nutshell

Here's a time-table of what's happened up to this date so we can be all caught up.


Late May 2007: Feel a lump in my right breast while showering. Don't pay it much mind.

June 2007: While watching TV with my arm resting up on the couch, I can still feel the lump. Make a mental note to have it checked out.

July 2, 2007: Finally break down and callmy OBGYN. They tell me to come in the next day.

July 3, 2007: OBGYN says, "Yep. There's a lump. I'm sure it's nothing. But we better get it checked out." Not too worried at this point.

July 5, 2007: Go to St. John's Hospital for a mammgram and ultrasound of the right breast where the lump is. Not worried until they call me back in to the ultrasound room for a look at the left breast too. After two hours of mammograms and ultrasounds on both breasts, a doctor calls me into a "couseling room" to tell me she wants to do biopsies of lumps found in both breasts. She tells me there's an "80% chance that they will be benign and it's just done as a precaution." I'm not worried, I'm sure that it's fine.

July 11, 2007: Husband goes with me to the biopsy and waits in the waiting room while they give me a local antisthetic and do needle core biopsies on both breasts. At this point, I'm a little nervous. The biopsy itself is not painful. It's just scary because you're on your stomach with your boob hanging through a hole while people that you can't see poke and prod you from underneath. The worst part was while doing the left breast, the computer broke down. And they proceeded to take the needle in and out until it quit telling them to "shut down."

July 13, 2007: I'm able to shower and remove the dressings from the biopsy sites. It looks as though someone stuck a wooden bbq skewer into each boob. As I get under the shower for the first time since the biopsy, the water burns my skin. It turns out I had a bad rash from the bandages that had been sitting there for so long. Later that day, the caseworker that helped perform the biopsy calls me with the news. The left breast biopsy is benign. The right breast tests positive with cancer. I hand the phone to husband and start to cry. She gives him the name of a surgeon and says she will schedule and appointment for consultation right away. Jim holds me while I cry. He's my rock and after a while, I feel better. Later that night, Jim tells my mom because I can't speak. She's very positive and gives me a hug telling me that everything will be okay.

July 14, 2007: I call my dad and break the news. By now I feel better and can talk about it without breaking down. My dad does not take the news well at all. It's only the second time I've ever heard my dad cry.

July 18, 2007: Jim and I go to the new Springfield Clinic and meet Dr. Wichterman who will be my surgeon. He's nice and explains everything really well. I have Stage II invasive cancer with a tumor that appears to be 2cm big. He tells me there's a 9/10 success rate since they've found it this early. I can either have a lumpectomy (removing the tumor, saving the breast) or a mastectomy (removal of the breast - less chance of recurrance). Since the ultrasound did not show the exact tumor edges, he orders an MRI. Jim is scheduled to visit his daughters in Scotland from July 23 to August 9. I'm supposed to start school on August 16. But after speaking with the doctor, I've chosen to have the outpatient procedure of a lumpectomy followed up by chemo and radiation. He assures me that I should be able to go to school and that Jim should go on his trip. We feel much better.

July 23, 2007 (my 39th birthday): I take Jim to the train station as he leaves for Scotland. He'll be gone almost three weeks. He hates to go, but we've discussed all the options and since it's just outpatient surgery - we decide that he should go. My mom assures him that she'll take care of me while he's gone. Later that day, I go back to St. John's for an MRI. I've never had one before. I knew they put you in a tube but that was it. They ask me if I'm claustrophobic and I say no. It turns out I was wrong. After I'm given an I.V. I'm told to lie on my stomach (this seems a very popular position these days) with my breasts hanging through two holes in a table. After I'm comfortable, he puts ear plugs in both ears to soften the loud noise that the machine makes. He stuffs the table in the tube and suddenly my arms are touching the sides - and he tells me to hold perfectly still. All I wanna do is get the hell out of there. It's too small and I start to have a panic attack. Still, I manage to stay in there, even though my breathing is rapid. Twenty minutes later, he lets me out. He tells me that if I ever need another MRI, to ask for a prescription for a drug called "advaran" to help settle my nerves.

July 25, 2007: Dr. W calls me with the resuts of the MRI. Turns out my tumor is 3.3 cm big, the cancer is going up into the lymph nodes under my arm, and is possibly running down toward the nipple. He suggests a mastectomy to be safe. Time to panic. He asks me to come back and see him the next morning to discuss all the options. I make it through the phone call and have a good cry after. I call Jim and tell him the news. He tells me that he loves me and to have the mastectomy because appearances don't matter as much as my health and he just wants me to be healthy. I decide to go through with the mastectomy.

July 26, 2007 (today): Mom goes with me to see the surgeon while my dad takes Erik to summer camp. [my folks are divorced by the way] Dr. W seems to have changed his tune. Now he's not so insistant that I have a mastectomy. He gives me three options; Option 1) Have a biopsy done of the duct running down to the breast to see if that tissue has cancer. If it doesn't, have the lumpectomy with removal of several lymph nodes under the arm and save the breast. Have chemo and radiation. Recurrance is a possibility down the road in which case the breast would be removed. Option 2) Start chemo and radiation to shrink the tumor, have the biopsy to test the tissue running down to the nipple and if possible, 5 mos. later have the lumpectomy with less of a chance for recurrance. Option 3) Have the mastectomy followed by chemo and radiation. Six mos. later, have reconstructive surgery to restore the breast. I call Jim afterward to tell him what's going on. We're both confused as hell.

Right now: I'm scheduled to meet my Oncologist tomorrow. Her name is Karen and she's at the Springfield Clinic on 7th Street. She's the one that will take care of the chemo and radiation treatments. Dr. W thought I should speak with her since I have no clue what route to take. They all seem the same and I hate each one of them. I don't want to have another biopsy. I don't want a second opinion. Right now I'm leaning toward a mastectomy. But this afternoon I was leaning toward lumpectomy. So I'll see what Karen has to say on Friday and maybe I'll be more sure of myself.

I should note that I'm having some issues. My dad is extremely worried about me and insists on visiting me every day. I love my dad and I appreciate his support, but I don't care who you are - I don't want anyone to visit me every single day. So I told him how I felt, and it hurt his feelings, and he walked out the door. I haven't heard from him since.

Another issue is that I'm very scared about having a mastectomy. Not only will I be bald, but I'll be a bald chick with one boob. I created a new nickname for myself. Boob-icorn. I'll be a bald boobicorn. I consider myself an upbeat person with very little self confidence problems, but a bald boobicorn? Really... I don't know if I'm ready for this.

An Introduction

Hello.

I think I'll begin by introducing myself, explain why I'm blogging, and shed some light on the title "Inside the Amazon." My name is Deanna and I just turned 39. I'm happily married, we have one son who is 8, and I'm currently a student majoring in Special Education. I'm supposed to start student-teaching in the fall and then I'll graduate and be able to start teaching in January 2008. That was the plan anyway. Things went awry about two weeks ago when I found out that I have breast cancer.

Which brings me to why I'm blogging. I've had a lot of doctor's appointments - and I have (thankfully) a lot of folks who care about me and are curious about the outcomes of said appointments. I've been phoning everyone or sending mass emails and messages up to now. This blog will be a way to allow everyone to check my status at their convenience without me going over and over what's going on. Not only will my friends and family be able to see where I'm at physically and mentally, but it will also be a way for me to vent and talk a little bit about what's going on in my head. Another advantage is that maybe someone out there is going through the same types of issues and are just as weirded out as I am.

The title "Inside the Amazon" was chosen for three reasons. I got the term "Amazon" from my friend Ed. When I told him that there was a strong possibility was that I would be having a mastectomy, he compared it to being an Amazon Warrior. He told me about the greek mythological legend where Amazon Warriors cut off one breast so they could better use their bows and arrows. And believe me, if you're a C cup or better - this makes perfect sense. Those suckers can get in the way. Another reason is "The Amazon" (Jungle) which to me represents one adventure I don't really care to take. Everyone knows that there are tons of dangers luking in that joint and anyone who knows me well knows I hate spiders - let alone giant man-squeezing snakes that live there.

The third reason is simply me telling you what's going on - so that you're getting a glimpse Inside the Amazon - any way you look at it.

Feel free to leave comments. I won't be writing every day - probably one to two times per week - unless I have a doctor update or any major news regarding my condition.

Thanks for reading, and here we go...

Amazon Warrior photo by Kellie Yandle 2004