Forgetfulness and ribbons

I have a lot on my mind lately. I know I should blog more often to let it all out, so that it doesn't become this big *thing* in my head. Maybe I should break this up into manageable chunks... Make it a little more palatable maybe? I'll just start writing and we'll see where it goes, ok?

Let's start off with where I'm at with my treatment. Next week will be my final Taxol treatment and with that, I will be all done with chemo! Woo HOO!!!! Part of the reason I haven't written is that the Taxol was cumulative for me. It was just as easy for me to write a quick note on Facebook to let everyone know I was ok.

I have gotten some of the "chemo brain" effects... Forgetting things easily. Words that I would want to use in conversation would evaporate before they reached my tongue. I sometimes forget people's names, even though I've known them for ages. Subjects that I think relate to a conversation (but end up not) come flying out of my mouth. It's so scary. It's hard sometimes to put on a smile and brave face to make sure your loved ones don't worry while you're grasping at straws yourself.

I will admit, with this going on, I used my kids going back to school as well as cold/flu season as a good reason to step away from people for a while. Granted, my immune system is weak. One of the kids brought a cold home from school and I couldn't shake it for three weeks! But beyond that, I was and still am embarrassed by my brain's occasional and ill-timed betrayals.

At the same time, I get lonely. Part of me misses the huge rally when I was first diagnosed, folks coming out to wish me well, to make sure I was ok. I'm not an attention whore by any means, but it was nice to feel that love. Now that the ruckus has died down, I get a call or a visit every once in a while. I'm not angry about it and I really don't blame anyone though. I'll bet it gets tiring hearing about cancer when you don't have to live with it. I'll be so happy when it's not in the forefront of my life anymore.

Which brings me to this tale... A few weeks ago, I was having a low day. I had recently received a couple of gifts of pink ribbons from people very dear to me. I appreciated the thought and the love that went into these gifts. I have gotten many of them since I was diagnosed. It was on this low day that I came to the realization that I hate pink ribbons. I felt guilty for that feeling and started to cry. Connor happened to be in the next room and came to check on me. He asked why I was crying. Trying to explain it to him was hard. The best analogy I could come up with is equating cancer to stubbing my toe. Everybody knows that I stubbed my toe, keeps giving me presents for and asking about my stubbed toe, and that there is a whole month dedicated to the fact that I stubbed my toe.

Please don't think that I mean to minimize all of the tremendous work that people do to raise awareness and the funds for research to fight cancer. It's not about that at all and I'll be doing what I can to help, for sure! But please don't think less of me when I say that I hate the ribbon and what it stands for. I hate that companies are using it to increase their own profits. I hated that everywhere I turned for an entire month, I was reminded of my disease.... That my daughter had to point out the pink ribbon on every product we passed in the grocery store.... That I will have to live with this reminder for 31 days of every year for the rest of my life or until they either conclude the campaign or find a cure.

I asked about this when I went for my checkup at Dr. Gold's last week. I had tried talking to a couple friends about it beforehand and they seemed surprised by my feelings. I was beginning to wonder if maybe there was something wrong with *me* that I couldn't get behind the ribbon. I got to talk with Jessica again and she explained that I'm actually in the majority here, at least among breast cancer survivors. She said that because of the campaign, there is spotlight on us and we are labeled, when most of us just want to move on and live our lives, as survivors of other cancer types get to do. I like Jessica. I feel like she gets it, ya know? Needless to say that I'm rethinking my next tattoo design.

Anyway, it's late and I'm tired (finally!). There's a lot more that I want to talk about, but it will have to wait until another day. Hopefully it will be sooner than last time.

Love to all! <3
Nik

Howdy! It's been a bit!

It’s been a while since I’ve written, I know... But for some good reasons for a change! I finished with my AC treatment and started the Taxol treatments. I didn’t have the side effects right away like I did with the first set, so I decided to enjoy what was left of the summer. I spent my time hanging out with friends, getting some much needed chores done around the house. I even managed to can a couple of things. Just a couple little treasures of summer to open this winter. I didn’t have enough energy in me to do much more, unfortunately. I’m just thrilled that I got to can something! :^D

My diet is improving a bit. It was pretty much all carbs and meat before. It was all my stomach could handle. Lately, I’ve been able to eat more veggies and fruit and have small amounts of coffee. I’m still drinking milk as a buffer for my pills, but it’s more as a safety precaution than a “have to”.

Over the past couple of weeks, I’ve finally started to get some side effects but they are nothing compared to what I had with the AC. I made the mistake of getting overconfident at one point and slacked on taking my medicine like I was supposed to. This resulted in a majority of a night spent in the bathroom losing it from both ends. I reported it the next time I went in for treatment and got chewed by both the nurse and the doc (which I totally deserved!). Needless to say, lesson learned and I won’t be doing that again! Other than that, a portion of some of my toenails dying, and my eyebrows and lashes thinning out. Neither of those are painful nor permanent.

There are some other effects that are rearing their ugly head. I felt sick to my stomach while I was getting my treatment this last time, but crackers & water helped significantly. I’m starting to get hot flashes. While not painful, they are surprising and come very randomly. About twice a week for the past couple weeks I’ve been getting some bloating in my midsection. Gas is a side effect of Taxol, but it’s like it doesn’t want to go anywhere. My tummy gets really hard and tender when it happens. Aaron has taken to saying, “Burp, Charlie! It’s the only way!!!” and “Better out than in!” when it finally does escape, which always makes me smile. The kids have finally gathered that Mommy doesn’t have to say “Excuse me” every time now, but it doesn’t stop them from giggling about it. Hehehe...

My sleep patterns have been a problem lately. Early on, my insomnia was gone as my body tried to deal with the harshness of the chemo. The fatigue has been something else. Sometimes I have to really push myself to complete a project, even something small like folding a basket of laundry. I’ll fall asleep at the drop of a hat during the day. Now, I think my body is compensating a bit and the insomnia is starting to come back. What to do about it?

As 9/27/11, I am officially halfway through the Taxol. Only 5 more weeks to go as of yesterday!!! I go to see my doc today for my check up and to see what I can do about the bloating and insomnia. Hopefully there’s an answer for that. What’s one or two more pills, right?

As always, my friends and family are helping me and keeping me upbeat. I’ve had some low points too, but it’s amazing what a hug during those times can do! I just keep on keeping on. Only 5 more treatments to go, 6 weeks of radiation, then I finally get my implants 6 months after that. Keeping my eyes on the prize!!!!

Love to all!
Nik

My Rough Days

Throughout most of this blog I've tried to write lightheartedly with humor and still get information out. Sometimes this is easy and sometimes not. A couple days after my treatments, I try not to write at all because those are my "rough days". I've decided to make an exception with this last AC treatment. It's only fair that if I'm going to write about my experience, I need to write about all of it, not just the parts that I can crack wise about.

So yes, this will probably be a downer to read, but it's important all the same.

I usually feel ok on Monday, after treatment, and for most of Tuesday. I'm trying a new anti-nausea patch*** because my doctor was concerned with how long I stayed sick after my last treatment. It takes a couple of days to kick in so I put it on Tuesday morning. My Aunt Kathy is here to help me with the kiddos and the house stuff. My pop had a trip this time around. She leaves Tuesday afternoon because I would rather spend my rough days alone than have anyone there to watch me be sick. By Tuesday evening, I begin to feel like I had a meal that was a little too spicy. That's when I know to stay on the ball with my medicine.

When I wake up Wednesday morning, I take it slow. My mouth tastes like ashes, even though I haven't had a cigarette in over 15 years. My bones hurt deep down from the Neulasta shot I had the day before. The glands in my neck are rock hard and ache. It's hard to swallow. My stomach is sour.

I have to get up and get moving. My friends are coming to take the kids for the day so that I can recover. I still have to get them up, dressed & fed before they get here though. My kiddos know the drill by now. They don't fuss or have a fit anymore. They don't argue with what I've picked for their breakfast or complain about how slow I move to get it to them. I let them pick their own clothes. We make sure to indulge with hugs, kisses, and very gentle cuddles before they leave. I miss my babies, but I don't want them to see me in pain like this. I want them to remember having fun during their summer. I thank the Goddess every day that I have friends kind enough to take them on these days.

I take my first medicine cocktail of the day: Claritin. Vicodin for the pain. Tagamet, Zoloft, & Tigan for nausea. Ativan for my nerves. Valtrex & L-lysine, because chemo can cause extreme cold sore flare-ups. A stool softener, because so many of these pills cause constipation. I have to take some mixture of these pills four times a day, everyday, but on Wednesday & Thursday is when I have to lay it on thick.

I take my morning pills with milk, usually whatever is left from my cereal. My beverage choices have narrowed considerably. My stomach is extremely sensitive. Coffee has been off the menu for more than a month now. I miss it, but I know I'll get to have it again when this is all over. Juice is pretty much a no go because of acid content. Drinking pop of any kind burns. I pretty much just drink milk & water now though. I'll add some chocolate or strawberry flavor to my milk or a little smidge of koolaid to the water to change the flavor once in a while. I know I'll probably get another kidney stone down the road from the amount of milk I've been drinking, but for now it's a great buffer. I can eat more things because I'm drinking it. Sometimes I can manage iced tea too. The cold feels good. I make sure to drink a lot during the day to keep hydrated.

Now that the kids are off, my tummy has something in it, pills are taken.... I can try to relax. The vicodin helps twofold. It not only dulls my bone pain. It helps me sleep and the more of the day I can sleep away, the faster this rough patch seems to go by.

I wake up to take my lunchtime pills and get some food on my stomach, even if I'm not hungry. Some of the pills I take can cause ulcers if I don't eat. I make sure that I eat something soft, in case I have to lose it quickly. I have to consider that for all of my meals right now. I spend a little bit of time online, usually on Facebook, saying hello, thanking people for their kind thoughts (I really do take all of them to heart!), seeing what the world is up to before I get sleepy again.

About the time I wake up, Aaron is getting home with the kids. He makes us some dinner, omelettes for him & the kids this time, plain scrambled eggs & toast for me. This is the hard part for me, emotionally. I know that Aaron is so tired after working all day and I feel horrible that I can't help. The logical part of me knows that he doesn't resent me for this, that neither of us have any control over this part of my treatment. I know that it's not forever. That doesn't stop me from feeling useless though.

We spend a couple of hours watching tv together, cuddling as a family. I give the kids goodnight hugs & kisses in the living room because I can't go upstairs. I get dizzy & nauseous. Aaron makes sure they get to bed then he falls asleep in his chair. He's had a long day. I stay up long enough to get my last round of meds in, then get us both to bed.

I end up waking up every other hour to use the bathroom because of all the fluids I drank over the course of the day. This is good because it's flushing the poison out, but I'm so tired!

We do it all over again the next morning.

I'm glad that the kids are excited to go see their friends. It's easier than arguing with them, Connor especially. He's still having a hard time with this sometimes and doesn't like to leave me. He's making it easy on me today though. :-)

I stick with my routine.... Eat, drink, take meds, sleep, do it again times three. I actually ate a whole potato with sour cream & bacon bits for dinner tonight! It's a little early to say for sure, but I think the patch is doing it's thing! Hopefully, it'll be all uphill from here. But now we have to prep for the next set of chemo meds. The doc said the Taxol should be easier than the AC treatments, but everyone is different.

My fingers are crossed and I'm hopeful.


(Many, many thanks to my Aunt Kathy, the Cox Family, & the Markel Family for their help this week! And also to all of the other families who have helped and are helping us through this! You have all been such a blessing to our family. There just are not enough words or ways to repay in kind.... With much love in my heart -Nik)

*** The Sancuso patch is what was prescribed. You can read up on it here: http://www.drugs.com/sancuso.html

Love & Coping

Ok, folks... The photoblog is still on the agenda. I'm just not well enough yet to sit in front of the computer to manipulate the pics yet. This third round has been a pain in the heiney to shake. I even got sick for the first time last night and I *hate* getting sick with a passion that knows no bounds. I'm hoping the rest of today I'll be on the upswing. *fingers crossed*

So today, I thought I'd write instead about something that is important and affects both the Cancer Survivor and everyone that surrounds them.

We are all born with a sense of self-preservation. For the Survivor, that means getting the cancer out of us, getting it treated, and hopefully getting on with our lives without it ever coming back. For those around us, it's a bit different. Self-preservation isn't just about survival. To break the word down, it's about preserving one's "self".

I warned Aaron when we first started down this road that our friends and family will react in a few different ways to our news. Some will feel a need to jump in with both feet and do what they can to help us out. (Thank the Goddess for these folks!!!!) Some won't be comfortable and will pretend like nothing big is going on in our lives, but will still interact with us on a limited basis. Some others will extract themselves from our lives altogether until the crisis is over.

Some of you may read this and think, "Dang! That's mean!" or "Some people are just so selfish!" But I totally get it. Each reaction is meant to protect that person from harming their own psyche. I understand all of these because I have been guilty of each of them over the course of my life.

We do the best with what we're given at any particular point in our lives. And with life experience and depending on the result or lack of that experience, we are given different coping mechanisms. If someone has never dealt with cancer before, has heard all the bad stories, could you really blame a person for shutting down out of fear? I can't.

So, I guess the whole point of this is to my friends and family... Go with your comfort level. I know that I am loved, even from a distance, and that I love you guys too. We'll still be good when this is all over. *hugs*

Knowledge will set you free, or at least make you feel better!

Hey Gang! I'm sitting here getting my third round of AC. Only one more of this combo to go!!!! Yippee!!!!!!

The Red Nair, as my friend Emilie calls it, finally kicked in after my last treatment and my hair started falling out. We had some fun with it. I took some silly pictures of the funny 'dos I had after pulling out the loose stuff.. I'd put my baseball cap in my lap and the kids would see how fast they could fill it with hair. We're discussing what I'm going to be for Samhain/Halloween: the Borg Queen from Star Trek, the blue chick from Farscape, Dr. Evil (or Pop can be Dr. Evil and I could be Mini Me). If I lose a lot of weight by that time, I could be a Bic roller pen! Hehehe... Connor keeps asking me every other day if it's time to shave my head yet. I told him that he & Shawni can help cut it off when the time comes and he's so excited about that.

(***THIS PART IS TMI. PLEASE DON'T READ BETWEEN THE SQUIGGLES IF YOUR SENSIBILITIES ARE EASILY OFFENDED***)
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It's easier when we keep it fun, but there were some rough times too. Things were particularly rough on Sunday the 17th. Aaron had taken the kids with him to a friends house for a Poker game. No, the kids went to play with the other kids there, not to be part of the stakes! :-P

Anyway, while they were gone. I went to use the bathroom. You can imagine my surprise when I found the entire area "downstairs" was swollen and felt like it was on fire! The area up front burned like hell, felt shredded, and had blisters, while the backside was extremely swollen like I had a bunch of hemorrhoids and was bleeding pretty profusely.

I started to have a panic attack but I tried to keep some sense about me. I didn't call Aaron because he wouldn't know what to do and he was keeping the kids occupied so they wouldn't have to see me panicked like this. I did text some local girlfriends that I know, anyone who had medical knowledge, for help. Jen P just happen to be right down the street from me and she zipped right over. She helped me calm down and we looked some stuff up because she hadn't heard of this happening either. Evidently, this is caused in some cases because of all the chemo toxins leaving the body and that area's tissue being super sensitive. I hadn't seen this mentioned in any of the books I'd read. I would think that this is kind of important information, wouldn't you?

A lot of sites we looked up recommend using a sitz bath with epsom salt, but I don't have one of those. Instead, I managed to find my cleansing bottles from when I had Shawni. (Sometimes it's good to have a touch of pack rat!) I rinsed with water as cold as I could get it out of the tap and it helped with the swelling. The next appointment with Dr. Nagpal, I mentioned what had happened. He seemed kind of surprised and prescribed a cream to help (name of cream to come). It seemed to help ease the pain of the blisters and stopped the bleeding.
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On the 21st, I went to Dr. Gold's office for my checkup. I got to see Jessica again and it was a lot more laid back with her this time. I think the last time she was giving me so much info and I was just so stressed with everything that I was rubbed the wrong way, ya know? She is a bundle of energy though! Wow! So, we were talking after my exam and she asked, since I was losing my hair, when I was going to be getting my wig. I told her that I was making hair pieces because the HealthPlus policy we have does not cover "cranial prosthetics". She got so mad about that! She stood up and said, "That's bullshit!!! Wait right here...." and walked out of the room. She came back with a wig for me. She handed it to me, telling me that it was a display sample that the company never came back for. I asked how much and she said it's nothing and to just bring it back when I was done with it! I put it on and it's so cute. Not my usual style or color, but fashionable! I was ecstatic!

Also, a friend of ours, Edie B, made dinner for us last week: meatloaf with green beans and rice. YUM! She even gave Aaron an extra meatloaf for the freezer for my rough days. As I recently posted similarly on Facebook, everyday I have to reexamine just how lucky and blessed I am. I have family and friends that love me, that I love just as much. I have always been willing to bend over backwards to help my loved ones. The damaged part of me is just amazed that people would be willing to do the same for me.

I planned to post a photo blow-by-blow of my second chemo treatment, but I thought that the above info was more crucial to know. I'll still try to get the photo blog up when I'm feeling better, as well as add some pix to past posts that I'd been meaning to put up.

Love to all!
Nik

*** I wrote the squiggle part, not to be gross, but because I felt it was very important stuff to know. If you are a cancer patient, please don't assume that this is going to happen to you. I just want you to know and be prepared in case it DOES happen. Everyone seems to have different things happen to them on chemo. I heard a gentlemen talking today that he couldn't handle eating Ritz crackers, but he could handle Town House crackers just fine! Dealing with Cancer and chemo can just be weird sometimes.

7-8-11

So, Aaron & my karate family have swept me away to beautiful Mackinaw Island for a weekend getaway. What's the first thing I want to do? Sleep. I had no idea that I would get this tired just getting over here!

Aaron took the kids for a bike ride with the rest of the gang. I think I'm gonna freshen up a bit and maybe walk around and take in some of the shops in a leisurely fashion, sans kids!
..........

I took the opportunity to go through some of the shops in the main strip. A lot of touristy shops, especially for fudge. I found a couple nice biking t-shirts for Aaron, but I want to ask his thoughts first before I buy them. I didn't get to have coffee this morning, so I stopped by Starbucks and treated myself to a Frappachino.

I started to continue my shop-a-thon, when I heard my name hollered from a side street. My first thought was "Who the heck knows me here???" Turns out that the crew had finished their bike ride and were stopping for dinner. What a weird co-inky-dink! We had a really great dinner at the Yankee Rebel Tavern then went back to the hotel so the kids could swim and the grown-ups could hang out. I love these moments in my life where things are just as they should be. I just wished they lasted longer. I ended up getting tired so I came back to the room to to rest. Aaron brought the kids back later. We're all finally in our room relaxing for the night.

Good night, World!

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7/13/11

And the rest of the trip was all downhill from there for me. Without getting into too much detail, there was a personal mishap, a lack-of-sleep induced rage on my part (not a normal characteristic of mine), which spawned an undeserved text to people I care about deeply. After knocking myself out with enough vicodin & ativan to take out an elephant and finally getting some rest, I realized that I'd messed up. At dinner, I tried to explain & apologize and I was walked out on. It broke my heart and made me angry all over again.

Aaron told me not to address it there, to let him deal with it. He knows how I am. I'm very much guilty of wearing my heart on my sleeve, but I did try. I really did! I actually almost made it off the island the next day before I put my feelings about the mess online. While I gained comfort from the love and protectiveness of other friends and family, I didn't realize that it was causing some distress to some of the friends I was having issues with. I diffused the situation as quickly as I could and have since deleted the post.

To those that I have offended: I sincerely apologize for the mess that I made. This whole thing started only because I wanted to protect my husband. Hopefully, you will understand this and things will work themselves out. You still have my love, regardless.

Gettin' off my butt, dang it!

7/6/11

I'm trying hard today to get some much needed housework done. Aaron has been doing his best and I so love him for that! But he also works all day and helps with the kids... Anyway, we're getting ready to go for a short getaway (our only vacation this summer) and the house needs some deep down cleaning. Besides, I'm going nuts sitting on my duff all the time.

So far today, I've done laundry and vacuumed, brought down our suitcases, and I'm getting ready to tackle the kitchen. I've been getting tired in between but I make sure to take a break for a bit. I just want to make sure I can get this place back up to snuff before my next round of chemo on Monday. If it's anything like the first round I won't feel up to cleaning again for another week.

This time around, we're dropping the kids of at Camp Grammy & Poppy on the way home Sunday. Aaron's sister and her family are up from Arkansas, so the munchkins will have their cousins to play with there while I'm having my treatment. I won't have to worry about them seeing me at my worst. Aaron & Pop get that privilege! :-P

I also have to sit down with my fancy little pill organizer & spreadsheet and get my pills organized for the next week. Crimeny! I have never had to take so much medicine in my life! Before all this, I was about as healthy as a 40 year old could get, besides my weight, of course. I have trouble taking pills. I get laughed at while I try to "baby bird" them down. (It is pretty funny to watch) Now I have to take them four times a day. And each medicine is on a different schedule. Two of them I have to take just the night before and morning of chemo. One of them is taken on days 2 through 7 after chemo and another one only on days 4, 5, & 6. I have several others that I have to take daily throughout the entire time of treatment. I have painkillers, steroids, allergy meds, anti-depressants & anti-nausea meds out the wazoo! It's hard to keep track of, especially when you've never had to do this before in your life. I can't imagine how Aaron feels about it sometimes. He's been in the same healthy-as-a-horse lifeboat with me. Up until now, that is. I'm glad I figured out how to make the spreadsheet though. That way, whichever of us gets the meds just writes the time in the box, so we don't overlap what I'm getting.

Tomorrow, I get to see Dr. Pummill to get my first bump-out (YAY!!!!) and Dr. Eilender to discuss how I'm feeling on the meds so far and to get some bloodwork done in preparation for next Monday's treatment. I'll let ya know how it goes!

Love to all!!!

PS. Don't sweat the petty things and don't pet the sweaty things.... :-P

The strawberry jam packs a whallop!

I had thought to try to give the blow-by-blow of everything that has happened since the post I drafted on 6/9. However, there was a lot of meetings amongst the doctors, then the doctors and me, and a lot of back and forth in between. It would have gotten confusing in a hurry. So, I'm gonna lay it out as simply as I can.

I did receive the results back on the OncoTypeDX test. I scored low, which is favorable and basically amounted to a possible 10% chance of recurrence without chemo, 5% with chemo. We were seriously considering skipping chemo with those kinds of odds in our favor. However, as I mentioned before, the cancer had been trying to spread. Even though the tumors hadn't escaped the confines of my breast area, there was a chance that maybe some cells had and that they could possibly a different genetic type than was detected by the test.

Aaron & I talked about it and I decided to take the chemo anyway, as a safety precaution. I would SO kick myself a couple years down the line if another tumor cropped up and I hadn't done anything to safeguard, ya know? So we talked to the kiddos about it and they're onboard. I had a dual medport inserted in my chest to allow the medicine to be administered more easily. I had my friend, Tiff, give me a pixie cut so that all the kids we are usually around will have a chance to adjust before I lose my hair.

Last weekend was my town's Relay for Life. The karate school's demo team got to perform for the walkers. I was asked to break a board at the end of the performance and the whole gang gave me a group hug once I did! To say that I felt loved would be a total understatement!

The next morning was the Survivors ceremony and breakfast. We released butterflies, although I think the little buggers wanted come home with us instead. :-D Each of the survivors came up and told their name, type of cancer, and how long they had survived it. (I just hope I didn't sound like a total dweeb!) Then we walked a lap around the park together. It was all very emotional.

This past Monday, I had my first treatment. The schedule is a pretty basic one. Over the next two months, I have four treatments of two medicines (Adriamycin & Cytoxan) in two week increments. During the three months following, I have twelve weekly treatments with a single medicine (Taxol). After that comes radiation for 6 weeks, 5 days a week. At least I get the weekends off. :-P

So, I go into the treatment center with my bag full of goodies, reading material, a blanket, & my knitting. My attendant, Rob, was very nice and explained everything that was going to happen. They drew some blood from my port for testing, flushed it out with saline, gave me some more anti-nausea meds (on top of what I'd already taken). Then came the mojo juice. One was clear and didn't look like much of anything, but the other Looked like strawberry jam in a packet. I didn't feel anything different as it went in, but I gotta say watch that next bathroom trip afterwards! I had to call poor Rob over to make sure something wasn't wrong with me.... I don't have that equipment anymore! Turns out that there's a lot of dye in that strawberry jam!

The next day, Pop took me shopping to get my mind off of things. I felt bad... I ran the poor man ragged! But we did have fun with the kiddos.

Yesterday and today, the side effects kicked in and I had forgotten that I was supposed to get a neulasta injection the previous day to boost my blood cell counts. I'll just keep it short to say that it's been a pretty miserable couple of days. I'm on enough medicine right now that I didn't get sick. It didn't stop my tummy from getting upset or my muscles & bones from getting achy though. My kiddos were total troopers yesterday (they didn't want to leave me) and they went to a friend's house today (Thank you, Carmen!!!)

So with this updated report, I'll just say that we're down one bad-juju treatment with 3 to go. The rest will come in time and I'm gonna go get some rest now. Love to all!!!

Post-dated post. See next post for explanation.

6/9/11

I had my post-op appointment with Dr. Gold & Dr. Naill last Wednesday, June 1st.

At Dr. Gold's, we discussed my "surgical pathology" or the details of the tissue that was removed. Turns out that I was a little off the mark on how many lymph nodes were taken. It was 4 nodes on the right-hand side and 6 on the left. Still, to only have a spot on one of the 10 is even better! The tumor itself was 4cm (1.5 inches), about twice as big as we had originally thought.

It seems I wasn't far off calling it my zombie boob either. There was a mass of tissue surrounding the tumor. Reading the report, it doesn't state the exact size but suggests that it was "comedonecrotic". To break it down based on what I've read, it means that the cancer cells travelled into some of the ducts and glands, became blood-starved, and died taking some of the other tissue with it. However, it didn't manage to get past my breast tissue (except for that one lymph node spot). Thank goodness!!! I'm just glad it's gone.

Dr. Gold mentioned that there was going to be a meeting between all of my docs the following Wednesday (6/8) to discuss our next steps and to nail down our treatment options. She thought there might be a chance that we might have to take more lymph nodes from the left armpit to make doubly sure there wasn't more cancer spots in there. She ordered up an OncoTypeDX* test on the removed tissue, but didn't expect the results for a couple of weeks. I'll talk more about this in a bit.

After having some lunch, we went to Dr. Naill's office. Our visit there was pretty short. He said that based on the size of the tumor and the fact that there was only one spot on one node, he didn't think that radiation would be necessary in my case. He also said that he would have to wait until after the Wednesday meeting to make sure it jived with what the rest of the team thought. Aaron & I were both really pleased with this. One treatment worry off the table! Did I say pleased? I meant ecstatic! Yay!!!!!!

We had a little scare over the weekend where someone didn't call in my painkiller prescription or it got lost along the way. In any case, I ran out and had no refills left! Because it was the weekend, I was unable to get ahold of someone to send out a new one. I've cut way back on all of my meds, but I still have to be able to sleep without pain so that I heal well. All I got to say is thank goodness for great friends. They have their own injuries but were willing to offer some of their meds (same as mine) to get me through. I am so blessed!


* OncoTypeDX- http://en.wikipedia.org/wiki/Oncotype_DX

5-31-11

I never realize just how busy life is until I sit down to write an entry here!

I called Dr. Gold's office because I started experiencing pain down the back of my left arm. I'm pretty sure it's nerves trying to knit themselves back together after the surgery, but I wanted to make sure that I treated it right over the holiday weekend. Turns out that Dr. Gold was already on her way to her vacation destination, but Barb from the office said I was on the right track and called in a prescription for Neurontin* for me.

She said that the main reason she was calling was that she had the results back from the surgery. Turns out that my tumor was approximately 4 cm in diameter, about twice as big as originally anticipated. The good news though is that my margins came back negative, which means that it hasn't moved beyond the breast area. The area they thought they saw on the right breast from the MRI turned out to be negative for cancer as well as a lymph node taken and tested from that side (WHEW!). They also took four lymph nodes from the left side and only one of those four showed the teeniest, tiniest speck of suspected cancer. This means that it's more likely that I will have to have treatment.

I just happened to come across a PBS program called "Second Opinion" that really seemed to pertain to my situation, so I recorded it on TiVo and watched it with Aaron yesterday. Wow, what a ton of really great information about Cancer post-op and post- treatment side effects in that show! I really *heart* PBS! This program in particular discussed axillary neuropathy** (numbness or shooting pain in the shoulder and arm) which I seem to be suffering because of the lymph node removal, but can also be caused by some chemotherapies. It also talked about the fuzziness and absent-mindedness that some patients experience called "chemo brain". Both are definitely worth discussing with my docs.

I have an appointment with Dr. Gold and Dr. Naill (radiation) tomorrow, to go over all this again and to begin discussing our options. My appointment with Dr. Eilender (chemo) will be in the next week or so. When I spoke with Dr. Eilender the last time, he mentioned the possibility of a bi-weekly, 8 treatment course if I had the right kind of cancer. Sounds right up my alley! Heck... I don't even think my hair will have the chance to fall out if it's that quick! Hehehehehe....

Anyway, I also had a couple of appointments with Dr. Pummill. The most recent was this morning where I had my last drain tube removed. Ah! Sweet relief!!!! Dr. P said that I'm healing up beautifully, that she wants to see me in a couple weeks, and that we might even get to start bumping out my expanders. Yee-HAW!!!!

I'm not letting this slow me down... At least not too much. :-D I've been out to dinner, a couple of movies, a couple of parties, & I got to hang out by the pool at a friend's Memorial Day get together. I decided today that I needed to get off my duff and start getting some exercise in, so I rode my recumbent bike for 15 minutes this afternoon (at a leisurely pace, of course) and did some gentle arm exercises just to get the blood flowing in the right direction. Watch out world.... Next up, I'm going for my black belt!

* Neurontin - http://www.rxlist.com/neurontin-drug-center.htm

** Axillary Neuropathy - http://www.nlm.nih.gov/medlineplus/ency/article/000689.htm

Status report overdue!

Aaron told me today that he's had a bunch of our friends wanting to know how I'm doing.

In short, I'm doing fine... I'm sleeping a whole ton. Making sure my drains stay emptied. They are finally starting to slow down. I have an appointment with Dr. Pummill tomorrow to see how things are healing. I see Dr. Gold next week for the results on the tissue that was removed. I won't know more before then.

I have to take a shower... badly. That's our project for tonight. I tried to shower a couple days ago and had what's called a vasovagal response. When I unfastened the front of my bra, my blood pressure dropped suddenly. I lost color, tried to faint, broke out in sweats, and tried to upchuck a couple of times. Not fun. I called the doctor's office yesterday to find out what we need to do to fix it. The fix is to do nothing, make sure I'm sitting or laying on a bed and that I have a bucket near by. Once the response has passed, I carefully go on about my business. We'll see how that works out.

So that's where we're at for now, gang. I'm hoping to get out of this house at some point this holiday weekend. I got to get some ice cream a couple days ago and visited some friends in the process. (YAY!) I miss seeing my friends the most out of all of this so far. You just don't realize how much they are part of your everyday life until you get stuck on bedrest or the like. C'mon, Body! Do your healing thing so I can get back to normal!

Blast off!

Live from Pre-op room 28!

I'm all set & ready to go. Haven't gotten the good drugs yet, but I'm still calm & cool as a cucumber. It'll probably be quiet here for a while until I recover for a bit. Aaron will likely post an update or two to let y'all know how I'm doing...

See ya on the flip side!

Steady.....

Just a short note tonight.... I have just about everything ready. My Mom, Pop, & Aunt Kathy are here. We all went to a benefit dinner at BD's Mongolian BBQ tonight to help support the cub scouts. Gonna go catch some Zzzz's before the craziness of tomorrow. I'll do my best to update tomorrow, but if not maybe Aaron will...

Much love....

Ready.....

Only two days to go until surgery! I gotta say, I'm excited! After 23 years of trying to get a reduction, it's finally getting done. Not quite the way I would have asked for but, hey, beggars can't be choosers!

I saw Dr. Gold a couple days after my last post for my pre-op appointment. I told her what had happened per my last post and she was so reassuring and confident that this is going to just be bump in the road for me. I know nothing is ever for certain, but it was very comforting nonetheless.

So, getting ready.... A lot of standard stuff. Be there at 8:30. No eating after midnight the night before. Shower with anti-bacterial soap the night before and the morning of surgery. Nothing to eat or drink, including water. Don't pee because they want to do a urine test when I get there. (Though how I'm supposed to hold it while listening to the water in the shower is escaping me at the moment!) No deodorant, powder, perfume, or lotion.

There's another test that I have to have. The name of it escapes me right now, but I have to have two injections put directly into each breast, one of them mildly radioactive and the other is a dye. It helps them locate exactly where the cancer is located in the breast tissue. Dr. Gold prescribed some numbing ointment that I have to put on an hour before the test and wrap with a clear bandage or Saran. When the registering nurse from the hospital called to get all our ducks in a row, I told her that I had to have time to put on the cream when I checked in per Dr. Gold. Her reaction was, "You have one fantastic doctor! Do you know that she is the only one who gives her patients something to numb the area for that test?" I'm feeling quadruply blessed right about now!

Saturday, was simply fantastic! Aaron, the kids, & I got to be lazy bums all morning. In the evening, I went out to dinner with my Karate Crew sisters at Don Pablos. (Thank you Shari, Jen, Missy, DeNai, Naomi, Barb, Robin, & Liza! You gals are so awesome!!!) They make some mighty tasty margaritas there!
 

Afterwards, my friends Grace & Jen threw a "Ta ta to the Ta-tas" party especially for me. I don't even know how many gals made it. It was a lot! I have been trying for years to bring my various friend groups together, knowing that given the chance they would get along really well! (I just don't have any sucky friends. I learned a long time ago to not keep them around.) Like the reduction, it stinks that it took cancer to get them all in the same room but I think progress may have been made. :-D

Toward the end of the party, we gathered everybody to one room where I had a chance to talk to everybody about cancer and my experience so far. I offered the opportunity, for anyone who felt comfortable enough, to see my chest, compare the cancerous side to the normal side, and to feel what the tumor felt like under my skin. I figured it was a great chance for the others to experience it before it ever got to their bodies so that they would know what to look for. Surprisingly, I think everybody took me up on my offer! They made me so proud! :-D

Yesterday, I went to the grocery store and bought the place out. Not really, but I've got folks coming to stay with us so I made sure to buy more food than usual to feed everybody.

We also had our family pictures taken. I'm just not one of those moms that has to have a professional photo taken of their kids at every milestone of our lives. (Omg! He had his first poop! Let's go to Olan Mills! :-P) But we realized that we hadn't had one taken since I was pregnant with Shawni! Thank you so much to our friend, Dee Dee, for taking time out of her busy schedule to do this for us. They turned out absolutely beautiful!!!!!

Today has been a get the house ready, laundry done, shower tiled kind of day. We are so close on our shower! We've been working on it since Yule/Christmas and it's almost there. We have to get it done so that I don't have to try to go upstairs to get a shower. If I fell and tried to catch myself coming down the stairs.... Well, you can imagine that the results wouldn't be pretty. So wrapping that up is the goal for tomorrow...

Way Too Many....

Tonight I was looking online, trying to find a specific pink ribbon t-shirt for either the party on Saturday or, if it doesn't get here on time, to wear out of the hospital. I decided to take a look at the other sized shirts too for the family. The ones for the kids were awesome and uplifting. (I seem to be using that word a lot today...)

Then I got to the men's shirts. There were a lot of really awesome ones, but there were just as many that really struck me and brought me to tears. Ones that said "In memory of my wife", "I miss my wife"... Then there was the one that said, "She wore pink. She fought hard. She's my Angel. She's my wife."

I think I've finally been handed my reality check. I could lose. I have no intentions of it happening and I am going to fight my damnedest for my family and myself. Something will have to drag me out of this body, kicking and screaming, before I give up. But I *could* lose anyway. I'm not quite sure what to do with this information yet. I'm not liking this feeling one bit.

There were too many of those shirts, which means that way too many women (and men) die from this disease. It makes me all the more proud that I've participated in the Relay for Life, Knit Michigan, and other cancer charity events. I will continue to do so again this year.

 I can't emphasize enough how important it is to give charitably. It doesn't even have to be a cancer charity... Pick something that pulls at your heart. The people in our country are too focused on themselves and their pocketbooks right now. They want to cut back public services to those that really need & depend on them to save themselves a buck. It's greedy. They are cutting back on donations to local charities while sending that same money overseas because it's the Cause d'Jour. If money is an issue, donate your time. It's just as worthy and you teach your kids a great life lesson.

Ok... I'll step off of my soapbox for now. I just felt the need to say something I felt was important after getting doused with a bucket of mortality juice. It's mighty sour...

Things have been kinda in a holding pattern for the last couple of weeks. There's been some low spots and some bright spots too.

Connor's birthday was April 22nd. I had the idea to let him have a sleepover party. We had 6 boys and 4 girls make it over and madness ensued! Video games, pizza, movies, peep salad, more video games! The girls went home about 10ish, I think, and I tried to get the boys settled in about 11. I had no idea what a task that was going to be! Aaron is an early-riser and had gone to bed, so that left me to deal with the hooligans. I started up a mellow movie and told them that they were to relax and enjoy the show. I had to keep hollering at them... "Lay back down! I better not be hearing any talking up there! Who's jumping on the bed???? OMG, you guys! Settle down!" I finally had enough at about 12:30, when I told them that I would separate them if they didn't settle down. That finally did it. Why didn't I think of that before! *facepalm* Needless to say, I was exhausted the next morning so Aaron took over and let me sleep in.

My dad (Pop) came to visit for Easter. Pop & I are very close. I was so happy that he was there to see the kids hunt for their eggs and open their baskets. We had some time to talk and have a couple good cries about this whole mess.

A couple days later, the kids were still home from school, so I decided to take them to see "Rio". It's a pretty good flick! It was nice to have some time with the kids that was just fun and didn't involve talking about my illness for a change.

On 4-26, it was back to the regular daily grind. At the end of the day, while we were winding down, Connor had more questions about cancer. I do always try to be up front & honest with my kids. Those of you who know our family understand that I'm not bragging when I say that my kids have an intelligence beyond their years, not only of an educational level, but of an emotional one as well. In most cases, anyway. In talking with Connor this particular evening, I'm not sure his maturity was a blessing. He understands too well what is happening and what is coming up. He has some honest fears that I'm trying hard to help him deal with. Perhaps I've been too honest with him, let him know too much. But on the other hand, I don't want him to think down the road that I wasn't completely honest with him either. You can't have an honest relationship with *anybody* through lies of omission, in my opinion. *Sigh* Six one way, half a dozen the other, eh?

The next day, as we were getting ready to head out, the Acting-out Fairy put in an ugly appearance. Connor was helping to buckle Shawni in. Shawni didn't want to be buckled and screamed as loud as she could directly into Connor's ear. Startled and in pain, Connor slapped her. They quickly realized that their world was about to come to an abrupt end, because cancer or not, being stressed or not, Mom doesn't put up with anyone acting the fool. Neither of them got another chance to see a video game whatsoever for the next week. Every time they asked why they couldn't was another chance to tell them what they did wrong. It didn't take them long to figure it out. I understand that we're all feeling stressed right now, but that doesn't excuse any of us from treating each other with love & respect.

On 4/30, my test results were finally in! My lymph node came back as negative, as did my BRCA test! (The BRCA test was the genetic test that I had taken.) This means that, as of yet, the cancer hasn't reached my lymphatic system (YAY!). It also means I don't have to worry so much that I've passed this to the kids and that I don't need to have my ovaries removed, although they are going to have to shut them down chemically. Aaron's folks just happened to be visiting when the doc's office called, so it was nice to have family to celebrate the good news with!

On 5/2, my girlfriend Nikki had me and a bunch of other friends over for a Muffin Morning. I love when she has these! It's a chance to see this group of friends that, because of all our busy mommy schedules, I don't get to see near as often as I would like to. I got there and everyone was wearing pink and had cards and get-well gifts for me. It made my heart absolutely sing! I have to have some of the greatest friends on the planet... :^D

Yesterday, we met our Medical Oncologist (chemo doc), Dr. Eilender for a "meet 'n greet". We went over a LOT of info. One thing that caught Aaron & I off guard was something in my test results. In one portion of the notes he showed us, it said I was BRCA negative. In another portion it said I was BRCA positive, but FISH (Fluorescence In Situ Hybridization) negative. Dr. Eilender says this makes me eligible for a study that's getting ready to open. But, of course that's conditional on if I have to have chemo. We still won't know that until after surgery and they biopsy the tissue.

So, still holding... The low dose of Xanax has helped so much with my anxiety! I've only had to use it a few times, but what a difference it made! I still have an appointment with Dr. Gold on Thursday, where I'm definitely going to bring up those BRCA results. And on Saturday, some of my girlfriends are putting together a "Ta ta to the Ta-tas" party! It's going to be crazy-fun! Expect some interesting posts in the future, Dear Readers!

I suppose I've got some explaining to do. I apologize for not posting but it's been a very busy week and a half. Last I left off, I had just discussed the lymph node biopsy with Dr. Hicks on the 18th. I've had a lot of ups and downs since then which I will explain in due time. Bear with me while I process everything, ok? It might take me a couple of posts.

4/19/11 - At this date, we're still not sure what my after-surgery treatments are going to be, so I'm starting to get the "meet & greets" out of the way with the rest of my care team. On this day, I had an appointment with Dr. Naill, a Radiation Oncologist. Aaron went with me to the appointment and stayed with me the whole time.

Based on past experience, I tend not to do well with male doctors. It's not a sexist thing. I'm sure that there are many, many capable male doctors in the world. After some bad experiences when I was younger, I just happen to not be comfortable with them. I have to give props to Dr. Naill though. He managed to put me right at ease, even while I was being examined. That's no small feat!

We had to watch a video about some of the treatment options, then the doctor came in to discuss things in more detail, do his exam, and answer any questions we might have. At least we have an idea about what radiation entails and what some of the side effects will be. In a nutshell and to be quite blunt, it's kinda like I would be put in the nuker, only they'll be using radiation instead of microwaves. Radiation would have a hard time going through implants. If I'm using expanders, they will have to be used be prior to radiation because irradiated skin will not stretch and grow. A bit of a conundrum, wouldn't you say? So we left more informed than when we walked in and we are set to go when & if Dr. Gold says I need to turn into the Human Nightlight. :-P

It's funny all of the little things you happen to think about when you gear up for something like this. I happened to think that when I go through chemo, I'm probably going to throw up a lot. So I called my dentist and he hooked me up with special toothpaste to protect my teeth (Fluoridex Daily Defense, only available through your dentist). I also got a call from my pest control people to set up an appointment to restart my service for the year. I told them about the change in my health status and that I'd only need their services on the outside of the house. They were very accommodating. We'll just have to squish the critters the old fashioned way this year.

4/21/11 - This was the day of my lymph node biopsy. It pretty much went the same way as my first biopsy on the tumor, only it was taken from the enlarged node my left armpit this time. I also had a chance to meet Dr. Hicks, who seemed blown away with my sense of humor about the situation. He had a hard time trying to stop laughing when I told him the zombie boobs needed to go. (What? It's fast-growing, mutating, rotten tissue, right? Zombie boobs!)

On the way out, I walked across the parking lot to Dr. Gold's office. I knew I wouldn't be able to see the doc but I had a few tweaks going on and I had been told to report any changes. I was told that I'd get a call later.

Later in the day, it was time to meet Aaron at the karate school so that he & Connor could go to class. On my way there, Nurse Jessica called me back so I pulled the car to the side of the road. I wanted to let them know that I had messed up my back bowling and had seen Dr. Mike, my chiropractor, to fix it. Her solution, jokingly, was to not bowl anymore but she had no problem with my getting adjusted.

The other thing that I had wanted to talk about was my growing anxiety. It seemed like I was receiving a never-ending stream of bad news. The stress rock in the pit of my stomach always seemed to be there now. I constantly felt nauseated. Just about anything would set me to crying. I didn't know what to do about it though. For the first time in my life, my sense of humor and ability to roll with the punches didn't seem to be getting me through. Jessica suggested that she prescribe an anti-depressant for me. I had never taken one before, but it sounded like just the life raft I needed. I agreed and she called the prescription in for me for the next morning.

I pulled myself together after the call and finally got to the school. Again, I can't say how much of a blessing that place has been for me & my family. Barb, one of the gals in Aaron's class, came to me after class to let me know that I've been added to the prayer chain at her church and she gave me a vial of blessed oil to use. Now, I may be Pagan but I am not going to turn away well-wishes in any shape or form! I never have and never will. Prayer, spells, wishes... No matter what you want to call them, they have power all their own. I'm very thankful that Barb thought enough of me to do that for me.

4/22/11 - Plastic surgeon "meet 'n greet" day. We had to be up bright and early to get to our appointment at 8am. A big thank you to our friend, Sheryl, for being a trooper and getting up early to watch our kiddos for us! Dr. Pummell was nice but very down-to-business. Again, we got a lot of information in a very short time.

I had my heart set on the bilateral mastectomy with expander reconstruction. But I had also done a lot of reading ahead of time and was wondering about some options, such as the 90% mastectomy. With this option, it's possible to save the nipple and not have to reconstruct one from scratch. Unfortunately, with the amount of tissue I have to lose, this isn't option for me because there would be inadequate blood flow to help it survive. (I thought it would be nice to mention here though, in case any of you readers are looking at your options as well.)

So we agreed on what technique we are going to do, I was examined again, had pictures taken, and I now have a date for my surgery - May 19th! On we go!

Just got the results back from the MRI. It wasn’t totally unexpected, but they found that there was a bit more diseased tissue than they thought and a couple more spots on the other side and that they may want to biopsy those spots to make sure. I told Dr. Hicks (the other doc at Dr. Gold’s office) that I planned on having a double mastectomy anyway. He sounded a little surprised and said in that case we may not have to biopsy that after all then. However, they also noticed that one of my lymph nodes were enlarged. They do want to biopsy that and they think they would like to start chemo prior to surgery if it comes back positive.

I’ve scheduled my lymph node biopsy for Thursday and I’m just waiting to hear if Dr. Gold wants to do one on the right side anyway. It’ll probably be done at the same time, if so. I’m going to put my two cents in that it would be unnecessary, but it wouldn’t be a bad idea if we ultrasound the nodes on the right, just to make sure it’s not spreading there too.

So, that’s where we’re at right now. More news to come, I’m sure....

Raves, Bowling & Karma

Friday, I went for my MRI. It was a pretty straightforward operation although it took a while longer than I expected. I was there for a little over two hours. The MRI itself only took about 20 minutes, but there was paperwork to be filled out, they had to figure out where they were going to put me, getting the IV for the dye in, and a lot of waiting in between. Good thing I’m a patient person! Hehe....

Once I was in the room, it was easy, peasey, lemon squeezy! They had me lie face down on top of a support, where there were two openings. Gee, I wonder what they were for? Yes, I had to put my rack in the rack. Only they wouldn’t fit in the first rack. No no no... They had to get the bigger rack... the MUCH BIGGER rack. I still had to adjust. I assumed the Superman pose.

Because I was facedown, my head was supported with a mirror underneath pointed at the window at the other open end of the tube. The problem is that the window had the shades drawn. Now, that’s awesome because I really wasn’t in the mood to be showing the world my goods in that awkward position. However, if they were trying to relieve a sense of claustrophobia, I’m not sure that was the best way to go about it. Luckily, I’m not severely claustrophobic.

I chose the “I’m relaxing and pretending.. a lot” route to getting my image done. The nurse gave me a pair of foam earplugs. They hooked up the IV and slid me into the tube. There was a breeze that went across the arm that had the IV in and a bit across my face. I think it made the experience a little easier. Because it cooled my arm, I don’t think I felt the fluids going in as cool as I would have otherwise. Feeling it across my face made the tube feel more open as well, not stuffy at all. The scan started and it was very rhythmic... very Techno or Trance. I imagined myself at a rave each time the pattern changed. In between the changes, I could doze a little. What a party! :^P It was over before I knew it.

I felt fine when I left the office. I even went home and cleaned a bit. But about 2 hours afterward, I felt sick to my stomach. I didn’t throw up... just felt a lot of nausea. I laid down for about an hour and felt better after I rested for a bit. I’m thinking that I had a reaction to the dye. I’m going to have to mention that to the Doc.

On Saturday, I got to hang out with my Karate Family*. For those that don’t know me well yet, yes, I’m learning Tang Soo Do along with my husband & son. I’m currently a yellow belt. Through the school, we’ve met other fantastic families. They have been so kind and supportive through all of this. We like to hang out together a lot, so expect me to mention them often!

So, anyway, we went to Don Pablo’s for dinner. Gotta say, the margaritas & sangritas were marvelous! Afterward, we went bowling. (Expect a couple of pictures to show up in this post before long!) I managed to make it through two games before I got too tired. I’m not even going to repeat my scores. It was sad. But I had so much fun playing badly!

I did have a rough spot during the end of the evening. I went to the restroom, where I was followed by a group of girls, aged about 20-24, if I had to make a guess. They were being snotty, making disparaging & racial comments directed towards me. I suppose that they were trying to act big & bad in front of each other but they sure booked out of there before I got my hands washed. I blew it off at the time, thinking “it’s only words”. But hindsight being 20/20 and all, I kept replaying it in my head. Did I handle it right? If I had said something, would it have made a difference? Part of me wanted to yell, “How dare you?!? Don’t you know? You stupid little girls... I will be losing a part of myself! I will be pumped full of chemicals and irradiated! My children will watch their Mother fall and not be perfect or Superwoman in their eyes anymore!” at the girls who were long gone.

It was painful to have these thoughts. I cuddled with Aaron that night and cried and thought. I’ve come to the conclusion that even if I had said what I felt, even if it had an impact, I would have been doing harm. It may not have been immediate, but maturity & memory have a funny way of intertwining. It makes you remember all the dumb-ass things you say and do when you are younger. My saying something only would have scarred them. Doing harm because I got my feelings hurt does not make it right. Karma has a way of making things right and there’s a bigger power out there that will take care of things without me having to take a negative karmic ding.

On a happier note, we got to be lazy bums and watch the kids play today for a while. In the afternoon, we visited with other members of our Karate Family. Then, I had a nice long chat with my longest, bestest childhood friend & sister, Traci. We’ve been friends since third grade. It was so nice to hear her voice. She lives in North Carolina and she's hoping to come visit, along with another school friend, at the end of May. I wish she could stay with us, but it’s looking like I may have a houseful already. I miss her though.



I’m almost done reading another book. It’s called “Beauty Pearls for Chemo Girls” by Marybeth Maida and Debbie Kiederer. I was looking for a book to give me some tips on how to do my make-up once I go through chemotherapy. This book is so much more than that. It relates stories from survivors, tells you what to expect during a chemo session, what some of the side effects to chemo are and how to take care of them or what to ask your doctor to make it better. It’s a book worth holding onto for reference well after the first reading.



*Note to self: Make sure to get permission from friends & family before posting names and pictures. No, it hasn’t happened yet. Just covering my bases. :^P

Just wanted to post a quick note to say that I'm looking to get into the Amazon Affiliates program. I got to thinking that I will probably be mentioning a lot of books & products that are helping me through this.

I am NOT looking to make money off of this blog. However, I thought it would be a great opportunity to benefit cancer research. I promise that anything I earn here will go directly to the American Cancer Society. I'll know in the next couple of days if I've been accepted. :^D

(Edited to correct charity)

First Oncologist visit...

So, I met my Oncologist for the first time yesterday. It was a very informational meeting. In fact, I’m still on information overload. It will take me a while to get it all sorted out, I think.

When I pulled in and parked, I noticed a woman standing outside the front door, smoking a cigarette. What special kind of stupid does that take? *rolls eyes* Anyway, Aaron met me in the parking lot and we went in together. I was happy that he came with me. I have no problems going to see doctors by myself, but it was comforting to have him with me at least for the first appointment. 

There was an impatient lady who was complaining about the length of time she had been waiting for the doctor. She was older and there with the Smoking Woman. I didn’t say anything or pay her any mind. It’s my opinion that when you’re dealing with something as traumatic as cancer, you need to cut the doc some slack if she’s running behind. I’m pretty sure that she wasn’t back there painting her nails. If she’s running late because the patient she’s with is falling apart, it wouldn’t do for her to run off to the next appointment, right? At least, I wouldn’t want that to happen to me.

We did finally get called back and the exam room was in shades of purple and gold, very spa-like. I liked it. A young nurse came in who seemed to be in training. She took some of my info & put it into the computer, took my picture and my pulse. Next came the nurse, Jessica, who got right down to business. She started down the list of what I had, the treatments we were going to explore and what each entailed, and some of what was going to come after.

The type of cancer I have is Invasive Lobular Carcinoma which is in Stage 2 and is estrogen positive, progesterone positive, Human Epidermal growth factor Receptor 2 negative, nodal negative. Or to put it another way e+p+HER2/neu-nodal-. That is a lot to take in with a very short sentence! What this means is that this cancer likes to eat female hormones (estrogen and progesterone), that it does *not* have the gene that makes it overproduce quickly, and that it has not reached my lymph nodes yet.

As for treatment options, I had to take a spit test (using Scope!?!?) to check for certain genetic markers. It will take about two weeks for the results to come back. If it comes back positive, having the double mastectomy isn’t even a question, chemo & radiation will be a must, possible removal of my ovaries as well, and I’ll also have to help remind my kids to monitor for this when they grow up. They would be carriers. If it comes back negative, it opens up more options. The nurse was pretty adamant that I not consider mastectomy in this case, that a lumpectomy would be preferable to reconstruction after mastectomy. I’m not sure if she was pushing a personal bias or not, but it sure felt like it. I still can’t see keeping around tissue that could possibly want to up and try to kill me again later. I think it would be like living with a time bomb in your chest.  The thought freaks me out.

After the nurse, I met Dr. Gold. She was very nice and laid back. She went over what Jessica had talked about, while doing an ultrasound. She took the time to answer any and all questions that we had. She didn’t seem to have any problems with my wanting a mastectomy, but suggested that we wait for the test results before making a firm decision. I am willing to hear out all options, but I’m pretty sure I’m still in the pro-mastectomy camp.

So, as of this afternoon, I have an MRI, consults with a radiation oncologist and plastic surgeon scheduled.


Also, I had ordered a few books to help deal with this and the first of them showed up today. It’s the one I got for Connor called “Mom Has Cancer!” by Jennifer Moore-Mallinos. Reading through it, I had a good cry. A natural reaction, I suppose. Even though he & I have talked about what’s going to happen openly, seeing it spelled out on the page was hard. This book is way below his reading level, but I think the difficulty of the material makes the simplicity necessary. I’ll post more books and other resources as I find them.

 
And remember, you can never say “I love you” to your family too many times. Never. When you part ways, even for a short time, never forget to say it because you just never know...

My kids are so smart....

I've got info to post about my appointment earlier today, but I'm afraid it'll have to wait till tomorrow. I'm whupped! So I'll leave you with the Shawni-ism of the day. Shawni is my daughter. I was tucking her in this evening when we had this conversation:

Shawni: Mommy, you have the prettiest hair ever!
Me: Thank you baby... *hugs* Will you still love me even if I lose my hair for a little while?
S: Of course, Mommy... 'Cause then you'll look just like Poppa!
M: *laughs* Yeah, but my hair will come back. It might look a little different, but it will grow back in.
S: But Poppa's won't! I like his head....

Both of my kids are very intuitive. We've always had an open door policy with them. Any question they ever want to ask, we answer as honestly as we can at their level of understanding. My son, Connor, was asking a lot of questions about my upcoming surgery last night. He was asking things that I never even would have considered at 7 years old. Will they leave big holes in my chest where my breasts were? Will I still be a girl? What do they do with my breasts when they take them off? 

And this is just the beginning.... I'm sure the questions will only get more interesting as we go along.

Love to all!

And so we begin....

It's been a couple of years since I've blogged about anything. I’ve been so wrapped up in Facebook and Twitter, keeping things short & sweet, that I had forgotten what a joy it is to write! I mean, both services are great... Don’t get me wrong! I’ve found family and dear friends and it’s been great to have a chance reconnect with them. But there’s something about getting to put *all* your feelings out there. Sometimes you have to be a little too PC there.

But I want to talk about something today.... Boobies. Yes... Hooters, Ta-tas, pillows, bra buddies, knockers, the twin peaks, cushions, and any of a number of fruit used to describe them. As many of my loved ones know, mine have been the bane of my existence for the last 30 years. I’ve been anywhere from my 40DDD average to a 44H while I was pregnant. I had been trying to get a reduction for 24 of those 30 years with no luck because of insurance company bureaucracy or doctors who were complete asses. I’ve had to deal with teases, taunts, & stares. Nary a man would meet my eyes upon first meeting & I’ve suffered derisive remarks from women who thought I *must’ve* had a boob job for as long as I can remember.

On March 14th, while doing my self-exam, I noticed that something didn’t look right. There was a dimple next to my nipple that had never been there before. Everything else checked out but I thought I should have it looked at anyway, so I called a friend for recommendations and set up an appointment. On the 18th, the day of my physical, I noticed a lump in the shower. I made sure to point it out and I was sent to get my first-ever mammogram on the 23rd and a biopsy on the 24th. The doc who took the biopsy said that the tissue looked “damaged, not like any cancer she’d seen. More like my chest had been hit with something. But let’s wait for the results, just to make sure.” (Paraphrased, of course.) She said that they should have the results by Tuesday, but that I could call by Thursday.

On Thursday, March 31, I called for my results and was told that they couldn’t give the results over the phone, contrary to what I was previously told, and to expect a call from my doctor’s office. My heart was beginning to sink. It wasn’t long before I got the call. They wanted to see me. The nurse gave me nothing. I asked if I should bring my hubby and was told, “Sure... You can bring him along to any appointment anytime you like.” Yes, I was fishing but she was a pro, bless her heart!

On April 1st, I was diagnosed with Lobular Cancer in my left breast. It was no April Fools joke. There were many “I’m sorry”s and “wish I had better news”. I’ve had many a crying jag, with I’m sure many more to come. My husband has been a pillar of strength and love. My kiddos have been real troopers as well. We’ve been doing our best to prepare them for what will be coming. I have been overwhelmed at the response our friends & families have given. They have circled the wagons, taking every opportunity to keep my spirits up. I can’t tell you how loved I feel and I am so, so thankful.

My first appointment with my Oncologist is tomorrow. I’ve had a week to feel sorry for myself and now I’m ready to go to war. My own body has kept me down for decades. This is the straw that broke the camel’s back and I want my life back. I will not abandon my husband and my children! I refuse to go quietly into that good night! I plan on telling her to remove them both. I want to minimize the risk of having to go through this again. I’ll have to see what she says before I plan further than that for now.

Through this blog, I plan on trying to keep you, dear Reader, up to date on my treatment and what’s going on in my life pertaining to this. It’s such a huge thing to deal with and if I can even help one person learn from my experience.. then everything is worth it.

Love to all!
Nikki