How I Am Now...

Today seemed like a good day to chart my "progress" toward returning to a "normal" life. Now, before you start laughing, yes, I know that "normal" is a relative term and that my life has a new normal now. Every day I deal with my new normal, but I couldn't really find a better word.

So, here's how I feel today, which is:
29 weeks after my last chemo treatment. (Seriously? It's already been that long? It feels like just yesterday. I am still traumatized by the thought of waking up every week to willingly put myself through that. 16 rounds of chemo in 20 weeks is still unfathomable to me...some days I don't know how I survived. Some days, I don't think I did survive).

9 weeks after my last radiation treatment.

2 weeks after my 5th, and hopefully FINAL, surgery. KNOCK. ON. WOOD.

Numb: Lots of different ways to interpret this, and it is possible that I am a little numb to the world, but I actually mean this in the most literal sense. My hands and feet are still numb, a residual effect of the chemo. There are days that are better than others which gives me hope that some day, ten years from now, everything will be back to normal. But then there are days when it is worse and I think, no such luck. But I'm so used to it dealing with it now, that I really don't notice it.

Tired: I can't imagine a day when I'll be back to the way I was before all these treatments started. I definitely have good days and bad days as far as my energy level goes, and maybe that's the most annoying thing...that there isn't rhyme nor reason to why I feel especially tired one day over another. I can be feeling great and then suddenly, WHAM! I've hit the wall and cannot go on. Or I'll wake up at noon one day and not have the energy to get out of bed. I've been known to yell at Keith, "why did you let me sleep that long?!?!" To which he always replies, "you obviously needed the sleep." Well, yes, but I would also like to be a functional human being every day, not a sloth. Oh well, a girl can dream.

Angry and Emotional: I'm not even sure what to call this category, but I'm pretty sure that it all goes back to PTSD, which I'm positive that I have. (After further study, I have learned that 10% of cancer survivors have full-blown PTSD, and 60% of cancer survivors have some form of PTSD. I'll be doing a future blog post linking you to some of my findings, written by people who did a much better job of explaining it). I have panic attacks, anxiety, moments of profound anger, unexplainable emotional outbreaks...I feel like I'm a ticking time bomb. When Keith and I went to Vegas in September, I almost had to have them bring the airplane down somewhere over the Nevada desert as I was having a full-blown panic attack. Yes, I know I need to get help for this...I'm working on it. Just been a little busy. This is my goal for December or the new year, I promise.

Stupid: Chemo brain and I are not friends, but I'm finding ways to hopefully make up for my lack of brain power on many days. I watch the kids compensating for how they have learned to deal with me and I feel bad. Teen boy will yell at little sister for constantly repeating a question, but I know that she's doing it because she thinks she has to. I have also since learned that memory issues are a symptom of PTSD (see above), so there's that too.

Sore: Well, that has to be a given, right? I just had surgery 2 weeks ago. I actually feel much better this week than I did last week. But the doctor says that I still have 2-3 weeks until I can "do" things more exhausting than walking. But Vegas for Thanksgiving is still on, because really, that's all about eating and sitting in the sun, and pretty much nothing was going to stop me. Just don't make me laugh.

Old: I feel like I have the body of someone who is at least 20 years older than me. I hope that some of that goes away over time as my energy level increases. But chemo threw me into menopause, and this most recent surgery will make sure that I stay there, and it's not any fun. Chemo-induced menopause hits you like a ton of bricks and never lets up. And since having my ovaries removed, it's just gotten worse. Okay, so it's not like I didn't think it was going to happen, but I really didn't think it could get worse. HA! I greatly misjudged that one! Oh well, nothing I can do about it now...it's not like they're putting anything back. I do have an appointment with the chemo doc after the holiday and we will discuss if there is any way to manage these MOST ANNOYING symptoms.

Tired: Did I mention this already? I'm sure that it doesn't have anything to do with the horrible insomnia that I have (again, a symptom of PTSD and menopause, so not sure who's at fault here). I would say that it's gotten worse since the surgery, and 3:00-4:00am is my new bedtime, if I'm lucky. Which is awesome when everyone has to get up at 6:15am to get ready for school.

Misc: Every time I do presentations about books to kids or grown-ups, I always have a "Misc" category, so why should this be any different.
My range of motion is still not what it was, and this is completely on me for not continuing with physical therapy. At some point, you just start bleeding money and you're tired of being in yet another doctor's office, so these appointments were a casualty of both. But I did just start up my massage treatments again this week.
My taste buds are probably at 70% of what they were, and I know this will not change. So many things no longer taste good to me, and many things that I didn't like before chemo I love now. Crazy! But survivable.
My hair is growing back but I think my eyelashes are starting to fall out again (which scares me). I'm currently pretending that my eyelashes aren't really thinning (ignorance is bliss). The hair is a weird entity that doesn't feel like mine. I don't mind it short at all, but the color is so strange, and the texture is different (it reminds me of cat fur), and the curls are making me insane. But we have determined that we don't think there is nearly the amount of grey there was, so possibly one perk?!

Ongoing concerns: I continue to take Tamoxifen every day (and likely will for the next 5 years). But I'm going to check on this at next appointment because I'm kinda not a fan. I have my first scan and blood work scheduled for December, and then it just keeps going every few months after that. Will keep you updated. Also, it's very hard to explain what it's like to be living a life where there's a possibility of recurrence around every corner. Where you never truly get a clean bill of health. Where you live in fear of what they may find on the next scan. Where they tell me "if you're alive in five years, then the treatment worked." Awesome! I try to think positive and not worry, but there's always a nagging fear out there...

GRATEFUL: Again, it will never be possible for me to thank every one individually for all that you have done for me and my family. I cannot even put into words the gratitude that I feel...I get emotional just thinking about how lucky I am to be surrounded by friends, family, and a community that cares. Really and truly the only thing that I can do is pay it forward (or return the favor if you ever need it). Stay tuned for my Thanksgiving Day post...

Hopeful: Just this past week, I have started to look to the "future" and things that I want to do. A couple of things that are on my radar right now include forming a team (or two) to participate in the June, 2014 Relay for Life event here in Redmond. I will be doing this and will update you once I register. I'm stumped on a team name, but hope to have one in the next few weeks. If enough of you want to join me, we can have 2 teams...or a kids' team. (They recommend 15-20 people/team). Let me know! Or find a Relay for Life event in your area to participate in! I am also setting my sights on competing in an Athleta Iron Girl triathlon in August, 2014. (It's nowhere near Ironman distances so don't be thinking great things about me just yet). But I've enlisted the help of a friend (and Ironman competitor) who has promised to whip me into shape! And to do the event with me! Anyone else want to join?!

And, lastly, my more immediate goal is to read ALL the back issues of Food Network magazine that I haven't touched since October, 2012. Food has definitely not been my friend this past year, but now, I'm in a place where I want to peruse them! Grateful for these small miracles!

What Not To Do at Surgery...

Surgery on Monday was an adventure. Here are just some of the highlights:

We were required to be there at 6:45am for check-in. I'm not sure that surgery was scheduled until 9am, so this always makes the day even better...because I "love" getting up early. 

For future reference, it is not advisable to do any of the following things that I did:

(1) Because I feel like I'm an "expert" at this whole surgery thing, and this trip to the hospital was for my 5th surgery, I dodged all of their pre-op phone calls asking about my height, weight, allergies, overall health, etc. And where they also give me the "don't eat after midnight" speech. Yeah, whatever. If you don't have all my medical history in front of you by this point, I'm kinda scared for you. And if anything is glaringly absent, I know that I'll be required to answer your questions all over in the morning anyway, so those calls went straight to ignore. (Yes, I've actually memorized which phone number each unit of the hospital calls me from).

(2) When checking in, it's probably a good thing to know which doctor is performing the surgery. Turns out the staff didn't like the "Hmmm, I'm actually not sure" answer. Bonus points to Keith for knowing his name "starts with an I."  

(3) When checking in, part 2...also good to be able to communicate what type of surgery you are having. "I'm just here for the ride" did not go over well as an answer to that question. But did accurately convey my attitude.

(4) They also don't find it funny if you cannot find your insurance card...EVEN THOUGH YOU'VE BEEN TO THE SAME HOSPITAL AT LEAST 300 TIMES IN THE LAST YEAR FOR A VARIETY OF TREATMENTS AND TESTS AND APPOINTMENTS, AND HANDED YOUR CARD TO SOMEONE AT LEAST THAT MANY TIMES, AND YOU DARE TO ASK, "Don't you have it on file???"

I'm pretty sure to pay me back for these outrages, and my laissez faire attitude, karma got me back by way of a nurse who could not put in my IV. Two blown veins (see picture below) and another nurse later, and the third time was the charm. But wow, did that process ever hurt! And took a really long time.

Again, I don't remember much about the process. I'm sure that I was wheeled into the room somewhere around 9am. I have a vague recollection of being put on the coldest pillow of ice ever, but that's about it. I think I woke up in recovery at 10:15am, so maybe that 9am time can't be right. And, quite honestly, I was out the door by 10:45am, pain meds in hand. (At least I do always know to say "no" when asked, "Are you going to be staying overnight?").

How I've felt the past few days? Like I was stabbed in the stomach with a steak knife. Oh wait, I was.

I have three lovely 2 inch scars in my abdomen now...one through my belly button. These feel awesome and make doing anything fun. Did not realize how much I used my core muscles before now, but they sure would come in handy for things like sitting up, standing, coughing...breathing. Teenage boy was making me laugh last night and it hurt so bad. Couldn't yell at him to stop. Or beat him up. And he knows it!

This anesthesiologist decided to stick a tube down my throat while I was under, and I have to say, I think he JABBED it down my throat and RIPPED it back out because I still have a sore throat. Not the gentlest of touches to say the least. 

Another fun feature of the surgery was that they filled my abdomen with gas in order to get around the intestines to all the parts that needed removing. This gas does not all disappear right away. It makes your stomach (which again, feels like it was stabbed with a steak knife) bloated, and causes unusual pains in your shoulder. (Don't ask...I'll explain it to you in person). Super fun! Kinda feels like I just had a baby via C-section.

Tonight is day 3, post-op. I can walk around slowly, but not standing upright; I can roll myself out of bed or into a sitting position, albeit very precariously; coughing, laughing, and taking deep breaths are killing me; and absolutely NO lifting anything.

Doctor said that I would probably be "back to normal" in about a week. That's funny, and considering said doctor is a man I'm kind of not surprised by this attitude. I couldn't even imagine going back to work on Monday. How's a person supposed to put on a seat belt???!!!

The New and Improved Me

I realized the other day (or maybe a month ago and I immediately forgot again until just the other day) that I had only posted recent pictures pics of the "new me" on my Facebook page.

So, I thought I would post a few here to keep you updated on what I'm looking like.



(1) What my nails look like still if I let them grow out. I'm hoping that you can tell from this picture how the longer they get, the less they are attached. So then I have to cut them short...and then when they grow out the process starts all over again. So much for that career as a hand  model.



(2) The Sharpie drawing all over me for radiation simulation. The blue dashes mark the entire area that is radiated (it goes from sternum to armpit, collar bone to below my left breast). The black dot in the middle of the "cross" that you can see is a permanent tattoo...and there's a matching one in my armpit. Damn. I was really hoping for something much cooler. At least an "X" marks the spot kind of tattoo. That beautiful scar that you can see is my surgery scar...about half of it. And there's a matching one of those in my armpit also. 



(3) The new me, with my awesome pixie haircut. When  your hair initially comes in after chemo it's a combination of straw and cat hair. I'm not sure how else to describe it, but it HAD to come off almost immediately. Thank goodness for friends who are hairstylists! Next stop, maybe some color because this current one is all kinds of NOT ME. I'm thinking purple...or Katy Perry blue.

In Which I Spoke Too Soon...

Damn it! I knew posting that Music Monday yesterday and being all excited to start radiation would come back to bite me in the ass!

Through NO fault of my own, but entirely due to many doctors not understanding what/how the others were thinking, I did not start radiation yesterday. Ugh.

Soooo complicated to explain what/where/why it went wrong, but here's a quick update with a "new" plan of action:
(1) Yesterday, doctor appointment with the surgeon to get the "okay" for radiation. Which she gave...I think the appointment lasted 6.7 seconds. And yet, I still love her.

(2) Today, doctor appointment with the chemo doc to talk about my next round of drugs from her. Nope, no more chemo, but now I am "well" enough to start Tamoxifen. This is a pill that I will have to take every day for the next five years. DON'T FORGET to take it every day, she says. Ha, ha, that's funny. Have you not read my post about how I can't even remember to take my vitamins??? (I do have awesome new daily pill dispenser, FYI! Thanks!)

(3) Tomorrow, doctor appointment with the radiation doc. (See, you people think I'm making it up when I say that I've had 9,000 doctor's appointments...I really think this might not be an exaggeration). This is what I've been calling "practice radiation." I've now been given the proper term: radiation simulation. I think this will make my parents (and some of you who have voiced concerns over the fact that they're practicing on me) feel much better about the whole situation. Simulation is where they tattoo the spots they want to radiate (yes, actual tattoos...that are permanent...lucky me! I hope that they're "X marks the spot" tattoos!). Then they feed me through a CT scan machine for the better part of TWO HOURS (WTF??? Can I read a book while this is going on? Two hours?! One friend suggested I sing, loudly and badly, the entire time unless they let me at least listen to a book). The imaging is then given to a ???? (am not clear on this part, perhaps a doctoral candidate in physics?) who determines all the angles and whatnot that I need to be given the radiation so that it will do the maximum good with the minimum damage. Remember, one of the 3 areas that they will be radiating is in line with my heart, so my choices are heart damage from radiation, or lung damage. I opted for lung. And hopefully whoever this person/computer is that calculates all the trajectories is brilliant and finds a way to avoid both.

Will let you know how it all goes. And when my start date ends up being. Rumor has it, it takes a week to make all the necessary calculations, so hopefully will start on the 25th...or 26...thinking with my luck it might be the 29th. 

How I Feel Today

It has been 9 weeks plus 1 day since my last round of chemo (that's 64 days for those of us with math skills). Since that dose on 4/29, I've had scans, scans, and more scans, a bazillion doctors appointments, and another round of surgeries (three surgeries on one day, for which I'm sure I will be billed triple). And I have tried to rest and recuperate in anticipation of radiation starting on 7/15. Oh, and I've picked a fight with the DMV.

This is the part of cancer treatments that gets a little sketchy. Your hair starts growing back, you get a little energy, and people start to forget you have cancer. Or they expect you to be better. Or your school district can't imagine why you can't possibly be at work and therefore needs yet another doctor's note proving you are sick. (Let me repeat: IMMUNE SYSTEM COMPROMISED + MIDDLE SCHOOL KIDS = NOT HEALTHY). You don't look like a cancer patient, so people don't realize that you still feel bad. (This is not a rant against my family and friends, by the way...all of you have been amazing. But the random person looking at me on the street probably doesn't realize what I'm going through simply by looking at me).

Since I think I did a "here's how I feel 2 weeks after chemo" post, and maybe another one at one month after, I thought I would continue the tradition with a How I Feel Today, a little over 2 months post-chemo. I hope that it helps anyone going through the process (or their loved ones) understand that how you feel doesn't magically go back to "normal" the day after chemo. And unfortunately, some of these items listed below are permanent or could be YEARS before they go back to the way they were.

In no particular order:

(1) I have dropped 8 of the 18 or so pounds that I gained. I feel like the last 10 will NEVER go away and had to resort to accepting my mom's offer to buy me some summer clothes. Ugh. That's a size I've never seen before...

(2) My taste buds have sort of returned. I almost hate to type this as I'm sure that I am tempting fate, but I'm pretty sure that they are 2/3 to 3/4 back to what they were. Some things still taste funky, and I can eat much spicier food than I used to be able to tolerate. I actually think that this is the new normal for my taste buds and that there is no getting better from here. But having been to the dark side, I will not be complaining about this. THANK YOU to everyone that has taken me out to eat these past months and said, "what would YOU like to eat?" 

(3) My feet are still numb. Not 24/7, but enough of the day to be weird. But again, I'm so used to it now that I don't actually notice it except at night when I'm not walking around and they are tingling. And I think my one shoulder blade is actually still numb in places. But I told the doc it was better so that'll just be our little secret. (And I typed "is what" instead of "it was" on the first go-round here...see #12).

(4) My temperature regulation is CRAP! Chemo-induced menopause still in effect here. I really feel like this one might be permanent also. Some days it is SO HORRIBLE. I can be such a sweaty mess at times, and no, it's not because it's been hot here or after I've been doing something active. I just randomly start dripping from head to toe while watching TV, shopping in a store, standing and talking to people. Super fun!

(5) I am holding my fingernails on with a wing and a prayer...I feel a little like McGyver. I know that I've said for WEEKS that they are days away from falling off, but I really do mean it. So far, I haven't lost any, KNOCK ON WOOD. I do have to keep cutting them short and gluing them together and I swear I am one snag away from losing 3 of them at once, but I still have all ten. They are UGLY though...all black and brown and detached from the skin in places.

(6) My foot is feeling better, but I still have to walk around in cushy shoes and wear band-aids. Just when I think I'm better, I try to go up the stairs or stand for a period of time without the shoes and I realize that it hurts. (Totally not related to chemo, but thought I'd mention it).

(7) I still have bruises from the latest surgery, especially where the port was. Beautiful greenish-yellow bruises. 

(8) I have no feeling in the skin for about an inch all around the 3 inch scar across my chest. I don't think I ever will either. Four surgeries pretty much killed all the nerves there is my guess. And the scars are angry looking. Not infection angry, but it looks like I need to come up with a good story to accompany them. One friend sent me a card that suggested I say I fell in the fountains at the Bellagio...sounds perfect! 

(9) The area in my breast/chest that has been operated on so many times is, quite understandably, missing quite a bit of tissue. Now, you'd have to stare at it pretty hard to really notice (because I'm a master of dressing and didn't really have any boobs to start with), but in this warm weather when we've all been wearing tank tops you can really see it. It's about the size of a little kid's jumbo sized crayon and runs perpendicular to the scar. Running my hand over the area (which I have taken to calling the divot) to put lotion on the scar kind of freaks me out. 

(10) My hair is growing back. The hair on my head is really a horrible color. I'm thinking it's going to be dyed some cool color in the very near future as I really can't look at it anymore. My eyebrows are coming in a different color from my hair which is awesome (NOT!). And I'm a little grumpy that I have to start shaving my legs again. Especially because I don't have eyelashes yet. Seriously?? Can my system not figure this all out please?!

(11) My short term memory BLOWS. Please don't tell me it's because I'm getting older and that it happens to everyone. I don't really care. I think I might actually qualify for a study/treatment at the UW for this. If only I could remember where I put the information about how to contact the program. I wish I was kidding!

(12) I have developed some sort of weird stroke-like symptom where I'm saying words in my head, but they come out of my mouth all garbled. It doesn't happen all the time, and so far no one has pointed this out while it's happening, which means either my family and friends are really polite and ignoring this OR it's only happening in my head and I'm the only one that can hear this. I'm kind of scared that it's the latter.

(13) I suffer from shortness of breath a lot. All this chemo damaged my heart. 

(14) I find out in 2 weeks if I'm healthy enough to start Tamoxifen. This will be a pill taken every day forever (or 5 years...same thing) and is something I get to do because my cancer was estrogen positive. Last month when I went in for evaluation for it, I was not deemed fit to handle it. Probably because I was just coming out of my 10 days of PAIN and I wanted to kill everyone.

(15) I CANNOT remember to take my vitamins every day (see #11). I've tried everything...setting a reminder in my phone...moving where the vitamins are kept...NOTHING works. And then when I do remember to take them, I can't remember if I've already taken them for the day (again, see #11). I really do need to break down and get one of those old people weekly pill containers.

(16) I did not have any allergies this year. This was kind of a perk. Granted, it's because my immune system is still shot to hell, but if there are small mercies in this whole process, then I'll take this one.

(17) Things I probably should ask about at my next appointment: Should I still be staying out of the sun? (I think yes, but I'd like to hear no). Is it okay to drink that birthday mojito or is my liver still on overload from all the poisoning the chemo did? When is it okay to go to the dentist again? (Well, I really don't want to ask that one because I'm okay with not going to the dentist, but I probably shouldn't avoid it any longer than I have to).

(18) Being TIRED for no reason at all, at random points in the day, and without warning goes without saying. I cannot imagine a time when I will ever be able to go back to work full-time again.

(19) So very thirsty...all the time...

(20) I have ZERO hand strength. The biggest inconvenience is that I cannot open anything...like bottles of water/tea. In fact, as Keith is getting ready to leave for 3 weeks with the kids, I told him to open all the bottles before he leaves or I might die of dehydration!

I have good days and bad days still. I've said this quite a bit, but yucky is my new normal. It's amazing how crappy you can get used to feeling. I hope that some day I won't feel like I'm a 60 year old...at least until I really am a 60 year old.

More Follow-Up Visits...and Better News Ahead!

Today was my follow-up visit with the surgeon (who is back from her vacation). On the agenda: remove stitches from my foot (stitches elsewhere are dissolvable), find out foot pathology results, talk about her take on pathology.

First, I realize that I never posted a pic of my awesome foot wound, so I'm doing that now. Isn't it purdy? NOT! Keith keeps offering to take the stitches out for me, but I'll pass on that thanks, especially as it might have involved AJ's glue-covered craft scissors.

Okay, I don't mean to be a wuss or anything, but getting those stitches out actually HURT. I believe I might have said "yeowch" at some point, and maybe more than once. But you don't care about this...move on to the results, right?

Here's the scoop:

Upon further review, the foot pathology initial results of "cancer cells" didn't actually show any organized cancer, so NO ONE is worried about this at all and everything appears normal now. (And if not, it's out anyway, so we really don't care). The only reason I cared about these results is the correlation between breast cancer and melanoma/skin cancer. I was concerned in the back of my mind that having let this thing on my foot go unchecked for YEARS might have contributed to the angry cancer I have now. Deep breath...doesn't look like this is the case. Now I have to keep it bandaged for the next 2-3 weeks, continue wearing only these comfy shoes (think the insurance company will reimburse us for more? And could it please stop DUMPING rain so I don't look like a moron walking around in flip flops?!), and no more pedicures for awhile. BUMMER. Someone please come paint my toes...

Yes, there was still cancer removed from my breast re-incision. If you remember WAY back to diagnosis, I have both kinds of cancer: invasive (ANGRY) and non-invasive. Obviously each is bad, and both together makes me awesome and an overachiever. If you could only have one, you'd want the non-invasive because it doesn't like to migrate other places. Turns out the cancer she removed this time, albeit a good size chunk, was the non-invasive variety. The surgeon was not actually surprised by this because this type of cancer doesn't tend to respond well to chemo. The margins were clear on 3 of the 4 sides around it, and the 4th was so close to clear and back up to the skin so she couldn't get any more out anyway without leaving a hole. 

(A funny side-note to interrupt here...the hospital sent the port she removed to the pathology place also. We had a good laugh over the part of the lab report that says: this is a port).

She says that I'm in a good place for radiation. Scars are healing nicely and should be on track for a 7/15 start date. This is terrific news and I'm going to consider it a belated-birthday present. So, on the 15th of July, I will meet with her one last time and get the all-clear for radiation. If she gives it, I will run through the hospital to start radiation right after. Fingers crossed!

Pathology Results on a Friday...Lesson Learned

I've been waiting all week for the pathology results from surgery #4. I knew there was a possibility the results would be delayed because my surgeon was out of town, but she had said that she'd make sure someone (either my chemo doc, or another person in the office) would receive the results so that they could call me. So, Friday morning I'm finally calling the surgeon's office asking for them myself. Of course, it's a Friday and hardly anyone is available who is "qualified" to read them so they promise to find someone to get back to me. At 4:00pm, someone leaves a voicemail that basically says, "see if your oncologist can get them or you'll have to wait until Monday when the surgeon is back." Funny! And unacceptable. 

So I madly get on the phone and call everyone I can think of that can get me those results. Again, 4:00pm on a Friday? That's really gonna happen. Luckily the amazing receptionist at the surgeon's office took this as a personal challenge to get someone to call me back and she is able to track down my chemo doc to login and get the results so she can call me back. 

So at 6:30pm, I finally get the call. And that's when I knew I should have just left it alone. What the hell did I want this kind of news on a Friday night for?? Initial results indicate that cancer STILL growing and removed from reincision; still no clear margins all the way around. UGH. Foot pathology shows cancer cells but results being sent to outside skin cancer specialist for interpretation. I am on the agenda for doctors' weekly Tuesday confab (because I'm now a really cool case) to determine what this means for further treatment. Chemo doc thinks this might mean a change in next step, but surgeon will call me next week to discuss.

Lesson learned? At this point in the process, waiting until Monday for these results would not have killed me, and probably would have been a better idea. Add this to the list of things you should keep in mind: do you really want to know the results on Friday night when you can't even talk to anyone again until Monday? When you could have lived in beautiful oblivion for a few more days? Maybe if this is new for you, you might. But I'm a "pro" now and these results really weren't going to make a difference in the grand scheme of things. I should have left well enough alone!

Post-Surgery Pics

I won't be posting too much, mainly because pain meds are great but you just never know what you're really saying. Friends don't let friends post while hopped up on Oxy.

Home from the hospital, everything hurts, pain meds are great, and I'm living on the couch for at least the weekend.

For anyone not on Facebook, here are some post-surgery pics that I posted over the weekend. No, that's not horrible self-tanner...that's what iodine does to you. It's actually WAY more orange than it appears, and Keith has taken to calling me an Oompa Loompa. I am paying him back for this kindness by making him carry me everywhere.

Care Package for a Chemo Patient

Since I have been diagnosed, several people I know have also been diagnosed with cancer. And it is sad and scary for everyone involved, trust me. Now, in most cases, everyone has been able to get a clean bill of health after only needing surgeries to remove the offending cancer. They can avoid the entire chemo and radiation journey that I'm on (the joys of getting diagnosed with stage 3 Angry Cancer). I am so happy anytime someone gets a clean bill of health!!! And for those of you that have to follow me down this chemo/radiation journey, I am here for you!

However, this has me thinking, what would I do for you or get you if you had to go through chemo? What would I want you to have? This is really an extension of the question of I get asked a lot: What do you need/want? So, I decided to put together this "care package" of things that would help a chemo patient out, based on what I needed the most.

(1) I would take charge of setting up a care calendar for you. Meals? Groceries? Rides? Transportation for your kids? I might need to ask you for email addresses and what your family likes to eat, but it'll be set up and ready to go on a moment's notice. Please don't cook ever again!

(2) Straws and grown-up sippy cups (you know, those cups you can buy from Starbucks with the lid and straw). Seriously, you need straws, I can't explain how vital they are. It's easier to lay in bed and drink if you have lids and straws. And I'll get you at least 3 of the cups...one for water, one for juice, one for ginger ale...because you will want all 3 at the same time.

(3) A case of bottled water for your car. Chemo makes you SO thirsty. Not kidding, there will come a day when you are headed to the doctor, or to brave the germ-infested masses at the store, and you will be dying of thirst! And then you will think I'm a genius.

(4) A goody bag with the new essentials for your purse/car/bedroom (yes, I really do have 3 sets of of everything): Chapstick, Kleenex, hand sanitizer, and lotion (all unscented, of course).

(5) Fuzzy socks (with grippy feet) and nice soft hats. Again, when you need these, you will think I'm a genius. Note to self (and anyone out there using this as a shopping list): KEEP THE TAG ON THE HAT so that the patient will know where to go to get more if it becomes their new favorite clothing item!

(6) A soft blanket or shawl, perhaps hand-crafted with love. Unfortunately, I am not crafty so I would have to get someone to do it for me. I have received several of these and I love them all! And appreciate the ones that were made during a prayer circle/meeting. You can feel the love.

(7) Biotene makes a line of great mouthwashes, toothpastes, mouth gels, etc. Trust me when I say, you will need it all!

(8) Really good salt...the fancy flavored sea salt kind...and lots of it. And probably some awesome spices. I'll even throw in a little baking soda with it and tell you how to keep from losing your taste buds like I did.

(9) I will share my meds with you if your doctor doesn't give you the good stuff. But since you will probably get all kinds of good stuff, I'll make sure to bring you all the boring over-the-counter stuff they forget to mention that you need to get through it: Tylenol, Claritin, Colase, Senakot, Queasy Pops, a variety of stuff to help you sleep...all kinds of fun.

(10) Trashy magazines. As much as I love to read, sometimes my brain isn't functioning and I just want to flip through People or Us magazine. And then not worry if I don't remember reading it.

(11) Restaurant gift cards for you and your family to use. Trust me, even if you don't care, there will be a day where your family desperately wants to go out to eat.

(12) iTunes gift cards. I don't know if you have an iPod, iPad, Kindle app, whatever. But you will need mind-numbing games to play, music to listen to, books you can read without carting around a library, audiobooks in case your eyes go to hell like mine did. Thank you Apple.

(13) I will tell you NOT to shave your head before chemo starts. Sure, go ahead and cut it short, but don't shave it off in dramatic fashion like you see in movies and TV shows. Because if you have hair growing in/stubble when your hair really does start to fall out, your head will hurt. Not any fun.

(14) I will send you cards via snail mail just because. I currently have 4 or 5 people that do this and it is so fun to get these cards. Whether they are sunny, sweet, or funny, it is so nice to receive them. And SO much better than the bills that fill up the mailbox.

(15) I will pay for a subscription to Netflix or Hulu or whatever you want. Trust me, you will become infinitely familiar with the television schedule and you will start to hate every channel.

(16) When you figure out which day(s) is your "bad" day, holler. I will take your kids out of the house (because you might find them to be loud and smelly). Or I'll come over and take care of you and send your family to my house to hang out. Or I'll kick everyone out of your house, shut your bedroom door so you can have peace and quiet, and sit downstairs and read a book and wait for you to need something. Whatever you want that day to look like. I didn't want anyone bothering me because they smelled, but I needed someone in my house to bring me drinks. And I was lucky to have friends and family who took my daughter each weekend so she never really had to know what it looked like when I felt like that. (The teenage boy was often so oblivious that he didn't even notice mom hadn't come out of the bedroom for days).

(17) Every now and then I will ask you what you need. And please, speaking from personal experience, TELL ME. Do you need groceries? Your bathrooms cleaned? A massage (god, not from me, but I'll take up a collection and make sure you get one)? Soup? Ginger Ale? To go for a walk? To get out of the house? Go to a movie? Talk about how crappy life is? Not talk about how crappy life is? Bring. It. On.

This is just some things that I found I needed...and was lucky enough to have people taking care of me. Happy to pay it forward.

More Results

We've been waiting for the pathology report from the surgery on 11/30. Fingers and toes have been crossed for "clear margins." (A specific margin around the incision is clear of cancer). So far, we have not been lucky with these results...not even remotely. Each time we get the news, it's been more and more grim, with angry cancer growing like a weed.

I took a shot that this 3rd surgery would do the trick. Threes a charm and all, right? Since they were operating on me to put in the port for chemo, I figured it was worth the gamble. And the reason that it was a gamble? They only do this surgery three times. If they still find cancer, I'm pretty much out of options: mastectomy it is.

When the results finally come in, much later than usual, the myth that no news is good news is blown. Cancer is still there and still growing. Both the invasive and non-invasive ones that I have. She calls me an overachiever. I ask how much/what size, but the surgeon says it's not important. Since I really can't get worse than Stage 3 until it hits major organs, it doesn't even matter anymore.

Except that now its really pissing me off and will start getting its ass kicked on Thursday when I start chemo! By the end of the phone call, the surgeon and I are actually laughing about this. :) So, I am grateful for doctors with my same sense of humor!

Now, if I could just stop getting these phone calls while I'm at school...

Sometimes You Just Wanna Say "Grrrr..."

It's been several days since the actual surgery, which really was my second "lumpectomy" so I'm starting to feel like a pro. The difference this time is that the surgeon also removed some lymph nodes, so now I have two incisions on my left side, one of which is right through the middle of my armpit. Imagine how awesome that feels.

Last surgery, I took the bandages off right at the 2-day mark like the doctors said I could. I think that this caused me to think I was better than I was and I didn't take it easy like I should have. So this time, I decided not to take off the bandages until the 4-day mark. This was really hard for several reasons: (1) It meant no shower...I'm sure that I smelled terrific, and was considering burning my comfy flannel PJs by Saturday night. (2) The surgical tape ITCHED like a son of a bitch. (3) The tape stuck to my armpit HURT every time I moved my arm. 

But I waited, and when I finally took a shower and peeled off the bandages (which come off easily with warm water, even though normally they appear to be a NASA-grade variety of duct tape), I discovered: (1) It wasn't the tape making my armpit hurt...it was the 3 inch SLICE right through the middle of it. (2) The original lumpectomy scar is now twice as long...yippee! (3) I think I might have permanent remnants of the surgical tape on my skin because I left it on so long. Oh well.

Saturday I received a call from my oncologist, because the surgeon is out of town. He had results from the biopsy and wanted to call me himself. And this is the part that makes you want to say "Grrrr..." because I'm not sure that I really know anything. Apparently the surgeon took out 4 lymph nodes, not 2 (Keith fired for not remembering that detail). Biopsy shows that 1 of the 4 lymph nodes shows cancer cells...but this isn't bad because apparently cancer cells in this case don't necessarily equal cancer (it's not enough of them? Cells not organized?). Don't really know, because silly me for thinking cancer actually equals cancer, and we were hoping to avoid the lymph nodes, but he seemed to think this was a positive result. (Of course, I should have asked what his scale of positive was). However, the lumpectomy site still showed cancer, with margins that were not "good" so he thinks the surgeon will want to go back in AGAIN and scrape out more. GRRRRR!

And I still don't know what this means for further treatment because the surgeon is out of town and she drives the next step. But apparently there is a Breast Cancer Meeting every Tuesday where they discuss current cases, so I'll be discussed by the entire department tomorrow. (And I guess Keith really was paying attention in all those doctor visits, and perhaps shouldn't be fired, because he's the one who said, "I guess they'll be talking about you at the Tuesday meeting" before I told him. And I didn't remember that detail).

Wish I knew more. Treatment? When, where, and how? These would be nice details, especially as I'm trying to plan that trip to Hawaii.

But what I really want to know at this point is, do I get a frequent flier discount??? Because right now, without having the bill from the original mammogram/ultrasound (hoping it's lost or was free since I passed out) or the anesthesiologist or this second go-round of surgeries, we're already looking at over $1,200 in co-pays...which is KILLING us! Will keep you updated on the grand total when all is said and done.

In Which Pumpkins Play a Role

October 31, 2012:

Halloween...better known this year as Surgery Day. Which, by the way, starts WAY TOO EARLY! Especially when you are not allowed to eat or drink anything. Perhaps I should have had that caffeinated beverage with dinner last night. A caffeine headache is really not a good way to start the day.

After a fun-filled morning that involved getting the teenage boy upright and had my mother showing up at the house at 6AM (let's imagine how well everyone was getting along since we were all tired and caffeine-deprived), we arrive at the hospital at 7AM, right on schedule. My detailed sticky notes with the directions on where to go have mysteriously vanished out of the car, so I'm not sure exactly where to go. (Not so mysterious, really...I blame the someone with a penchant for clearing everything out of the car before he drives it). But my vague memory gets us to the right "zone" and the right floor and the right nurses station for check-in.

Pre-op is the first stop, and everyone is nice (even though I can see their Starbucks beverage containers and smell their coffee breath). The nurse in charge of getting me set for the day does a much better job at inserting my IV than the anesthesiologist did last time. I hope she's getting paid the big bucks. 

At 8AM I get to head down to "Nuclear Medicine" for my injection of radioactive dye. Can you even imagine how science major me is remembering reading all those books on Marie Curie right now? Must not think about it, and they promise me it's a small dose. This dye will show the surgeon what lymph nodes the cancer likely traveled to first. Once injected, I have to walk around the hospital, in the awesome gown, moving my arms around to get the dye moving. Let's hope there's no surveillance footage of that.

At 9AM I am scanned by some crazy machine that reads the radiation and shows that the lymph nodes can be seen. This is good and means I'm ahead of schedule. It also means no more roaming the halls flailing my arms around. Back up to pre-op, where I get everything finalized for surgery.

At this point, can I just say that even though EVERYONE has my paperwork and I have a newborn baby ID tag on my arm with all my vitals, I have been asked no fewer than 10 times what my name is, what my date of birth is, and what procedure I'm having done. They say this is just standard double check protocol, but it's becoming annoying as hell. I'm up for barcoding the info on my forehead at this point and just running me through a scanning station.

Back in pre-op (on a pretty comfy bed that I'm considering stealing), I meet with the surgeon one last time. She draws all over my left breast just to make sure she gets the correct one in surgery. We kind of laugh at this, and I'm grateful that she's not dressed up for Halloween. We joke about this too. Then I meet the surgical nurse, and a new anesthesiologist. I have to say this now, and I'm surprised I didn't say it out loud at the time, but this guy's arm is in a cast, which I am pretty sure is not part of a costume. Seriously, are you injecting me with needles? Poking sharp instruments into my back? Do I trust you to do all this with a cast? But I think nothing more is getting poked into me, just fed through the IV, so I'm not as freaked out as I probably should be. But it was pretty funny because it really is how this whole process has gone.

About 9:40AM the happy meds are pushed, and he tells me that this will just make me feel a little woozy and then when they get me to the operating room, I'll have the dose that knocks me out. LIAR. At 9:41AM, I am 6 inches out the door of pre-op and out like a light. Don't remember anything else. Hope I wasn't supposed to. I wake up at 12:15PM in recovery all bandaged up.

I finally leave the hospital at 1:30PM or so, after getting my pain meds. Note to anyone in the future, when they ask if you want to get your meds from the hospital pharmacy, JUST SAY YES. Forget your damn Target rewards for using their pharmacy. The hospital pharmacy gal will BRING IT TO YOUR ROOM before you leave...no making stops on the way home. 

Surgery details: surgeon claims to have scraped everything out around the original tumors. She removed two lymph nodes which are going to be biopsied. Guess what? More waiting for results! These won't come in for 5 days or so...grrr...

Now, you're still wondering how pumpkins play a role, right?
(1) When the surgery was over, I was ORANGE from chin to waist from the iodine (still am, by the way, as I'm not allowed to shower for 2 days). And I was carved up like a pumpkin, so the joke is that I was dressed up like a pumpkin for Halloween.

(2) A friend dropped off pumpkin bread the day before the surgery, and quite honestly it has kept me alive because it was the only thing that I felt like eating yesterday and this morning. 

(3) Pumpkins began showing up on our doorstep yesterday afternoon and didn't stop arriving until evening. It was a little pumpkin vigil that was someone's brainchild, but I don't know who to credit, or even who all the pumpkins are from. It was a super sweet gesture and at the end of the night, I think there were 15-20 pumpkins on the front walkway. 

And just so you're wondering how the family is holding up:

AJ: Stopped by the house in the middle of trick-or-treating to say "hi." She was concerned that I not hug her because I might ruin her vampire makeup...not that it would hurt me, but that it would ruin her make-up. Your mom's health clearly not super important when trick-or-treating is involved.

Alex: Some friends brought teriyaki to the house for dinner last night, and that is the thing that he was most grateful for yesterday. Oh, and he's wondering who's job it is to clean up the pumpkins from the front porch :)

How I'm Feeling

It's been two weeks since my initial surgery, and about 10 days since the diagnosis. Here's how I've been feeling...

Left side is still painful. I removed the steri-strips from the right side incision at the one week mark. All is well there! I took the left side strips off in the shower the other day and nearly passed out. I think this is probably due to the fact that I had been in the very warm shower WAY too long, and they were SO stuck on, that it felt like I was pulling the incision open again. I now have a band-aid covering it, because I'm not sure that it's healing correctly. It sure doesn't look like the right side anyway. But in the grand scheme of things, she's going to open me back up again, so does it really matter? 

The giant bruise is fading at this point, as is the giant lump that was surrounding the left-side incision.

Range of motion on my left arm still isn't good. Wearing the seat belt when I'm driving hurts because it hits the incision. There is a 2 inch section near the scar where I have no feeling at all. I'm thinking that she hit a nerve or two...hopefully this will slowly come back. 

I have pain in my shoulder, back, arm pit, and down my left arm. Not sure if this is related to not being able to move my arm correctly which is causing other problems, but I sure could use a massage! Since I can't lay face down though, this is not a possibility.

I only get a few hours of sleep each night, mainly because I just can't fall asleep. I am so tired when I come home each day from school that I take a nap. Which is probably perpetuating the problem, but just can't be helped. And if I could just convince my daughter not to wake her sleeping mother, life would be lovely. I never woke her when she was a sleeping baby, why can't she return the favor?

The sick feeling in the pit of my stomach has never really gone away. I haven't been eating all that much because nothing even sounds good. I think that I've lost 5 pounds because all of my jeans fit perfectly. Maybe there is an upside...no pigging out on Halloween candy this season.

Waiting for Results Again

October 6, 2012:

Saturday morning and I'm still in pain. I did make it out and about yesterday to take my son to get a haircut and grab a drink with a friend. I was still all bandaged up though and today is the day when I'm gonna peel off the giant bandages (stuck on with what feels like duct tape!). This will leave the steri-strips only.

Everything still hurts though, especially lifting and moving my left arm (the side where the two lumps were). Keith reminds me that the surgeon said this would be the case because of how much digging she had to do around the muscle to remove the lumps. Really, and when was this conversation? In the recovery room when I'm still hopped up on drugs? Sure, I remember that...

A weekend full of soccer games ahead of me, and I never thought I'd say it, but I'm grateful that my son can drive (well, with his permit, but still). 

What I forgot to mention the other day was that Thursday when I came home from surgery was the first time my kids knew anything about what was going on. Pretty hard to hide anything at that point. We told them that I had lumps, and that they were taken out, and that everything should be good now. Perhaps this was not the best strategy, but it was the sense we got based on initial feedback.

Back to work on Monday. Ugh! I hope my left side feels better soon!