Bone Scan Aftermath

While I was training for the Iron Girl, I noticed that my knees really hurt while I was running (or rather, attempting to run). And some runner friends suggested that it was my shoes, or my lack of training, but none of those felt like the real answer. As it turned out, I ended up walking the run portion of the triathlon, and I survived.

But I was having some major pain and couldn't really figure out why.

At the end of August, I went to the next of my "every 4 month" appointments and mentioned this joint pain (and other symptoms) to my oncologist. Who kinda laughed while saying, "well, duh." Because all of the symptoms that I'm sitting in her office complaining about are all listed side effects of Anastrozole, which is the med that I'm taking every day instead of Tamoxifen. 

(For those that haven't heard me tell the story, Tamoxifen was making me insane. Actually, certifiably insane. Wanting to run people over with my car and I'd get away with it insane. I stopped taking it cold turkey after six months and DEMANDED she give me something else. Hence, how I ended up on Anastrozole).

Now, I am so far into this process that I don't actually look up most things online, especially side effects of medicines that I'm supposed to take. Tamoxifen was making me crazy and Anastrozole didn't. Enough said. I could live with almost anything else. But once she had said this I did go home and look up all the side effects. WOW, what a list. And YES, this is pretty much how I feel. Super.

Serious side effects:

• sudden numbness or weakness, especially on one side of the body;
• sudden severe headache, confusion, problems with vision, speech, or balance;
• a bone fracture;
• swollen glands;
• feeling short of breath;
• nausea, upper stomach pain, itching, loss of appetite, dark urine, clay-colored stools, jaundice (yellowing of the skin or eyes);
• swelling in your hands or feet; or
• severe skin reaction -- fever, sore throat, swelling in your face or tongue, burning in your eyes, skin pain, followed by a red or purple skin rash that spreads (especially in the face or upper body) and causes blistering and peeling.
• Less serious side effects may include:

Less serious side effects:

• numbness, tingling, cold feeling, or weakness in your hand or wrist;
• problems with your fingers while gripping;
• hot flashes;
• joint pain or stiffness;
• depression, mood changes, sleep problems (insomnia);
• cough, sore throat;
• thinning hair;
• mild nausea, vomiting; or
• back pain, bone pain.

Again, super.

So, the doctor decides that I need a bone scan because of the risk of osteoporosis in patients on Anastrozole. Can I just say, EASIEST scan EVER. Why can't everything be like that?!

And, I just received the results of the scan. Which probably should not have surprised me. Because it's bad. OSTEOPOROSIS...to such a degree that calcium and vitamin D are "not going to make a dent." So now I get to have a twice a year infusion of some drug that will hopefully counteract the bone loss. Yippee, more infusions. 

And I will start these in January because they are, of course, EXPENSIVE. And I'd like to at least get one of them covered by insurance per year. Good times, indeed.

Cancer...the gift that keeps on giving...

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!

So What's Next?

I had my first follow-up appointment today. Because God forbid they even give you a week off from going to the doctor. Two whole days...whoohoo!

But it is good to go in for this one, because it's time to start planning my future and all the follow-up care that will become my life moving forward.

Here's what I know:
While it would be LOVELY if there were a magic blood test or scan that they could do to say that I'm "cured," there isn't. Which really sucks when you try and answer your kids' questions about "so, are you okay now?" Sorry, kiddos, I just don't know. I'd like to think so, but it really is pretty up in the air because of how angry my cancer has been this whole time. And the rest of my life is going to be one big unknown.

(On an aside, this brings up a whole host of weirdness regarding how to think about yourself and answer people's questions. How do I know if the treatments worked? Am I a "survivor" now? I don't think that I am. I mean, I survived this horrible year of treatment, but I don't think that I get the official "survivor" label until I've been cancer-free for 5 years. DO YOU KNOW HOW LONG THAT IS???!!! How do I know that I'm better? How do I know if the cancer comes back? Basically I've been told, if I'm still alive in 5 years, then the treatments worked. Awesome. For the rest of my life, every time I feel "bad," my first inclination is always going to be that the cancer is back. Again I say, awesome).

In two weeks, I'm scheduled for another mammogram. But this is only on the non-cancer (right) side. The left is too radiated right now for a mammogram (or any other scan) to be useful. Another mammogram (both sides) to follow in 6 months, with additional breast MRI then, and every 6 months (maybe 3) after.

Then I have a CT scan in 6 weeks to assess the "spot" on my kidney. Hmmm, thought it was my liver? "Oh no, we've decided that one is a cyst. Now we're concerned about the spot that's growing on your kidney." WTF???? When did we have this conversation???? Never mind, I'm actually past the point of caring. Schedule the CT scan and then we'll talk about it. Good times...

After the CT scan, I will have another appointment with the chemo doc (who, after you complete your treatment regimen, becomes your long-term care physician) to talk about the results. There will also be a blood test to check all my levels. And they are going to do a thyroid check because she thinks based on how I feel right now that it's possible that chemo has really messed up my system. No shit...you think??!

I also get to add another doctor to my team. There is strong discussion about having my ovaries removed, so I need to contact the surgeon who specializes in this to talk about it, and hopefully get it on the books soon. Better be before December 31st is all I can say. I am NOT paying any more yearly out-of-pocket maximums! Two years of that was enough for now, thank you very much!

I get to continue taking the daily Tamoxifen dose because I appear to be doing fine on it. Actually, it's because I never looked up what the side effects are so I don't know what to complain about. She said it is probably a good thing that I'm blaming some of my current ailments on the residual effects of radiation and/or chemo and don't know enough to blame them on Tamoxifen.

The radiation burn hurts (deep down, through layers of skin), and is continuing to get exponentially worse each day. This is expected, and will likely continue for about a month before turning the corner and starting to heal. How many times can I say, awesome?! It's beautiful...this is about 1/4 of it. Was really funny when the girl child asked, "mom, why is your skin so red?" I just stared at her until she figured it out.  

My "discharge" instructions from treatment include the following phrases:
(1) No alcohol consumption
(2) Don't gain weight
for the rest of your life.
(or something resembling these...I can't find the form to verify the exact wording). Why? Because my cancer responds to estrogen (estrogen positive) and alcohol consumption and weight gain encourage the production of estrogen (who knew?). I am also on Tamoxifen, and discussing removal of my ovaries to further limit estrogen in my system long-term. What is really funny about seeing these statements in print is my reactions to them.
(1) Shut up, I will be having a mojito to celebrate the end of this LONG and PAINFUL year. Maybe TWO!
(2) It's your fault I've gained weight!!! All the damn steroids, and treatments, and throwing me into chemo-induced menopause, and should I continue? UGH! 

Oh, and she laughed at me when I said that I was scheduled to go back to work on the 1st. Laughed. I believe that the words she used were "mentally unbalanced." (Honestly, if she could have committed me right then and there, I think she would have. She's already called twice since I've been home to access my mental well-being and offer phone numbers of therapists. I'm sure this had nothing to do with the complete breakdown I had in her office). There's a giant form you have to fill out every time you meet with the doctor listing every imaginable symptom you could be experiencing. I always joke about making a big circle around everything just to cover my bases. Today, I was actually reading some of the options: feelings of anxiety...anger...thoughts of violence toward others...hmmmm, I believe this process HAS made me a little angry. Can't imagine why???!!

On a positive note, it's been suggested that I must have a party to celebrate the end of the day-to-day madness of this cancer. I concur! However, seeing as how there is no Katy Perry concert upcoming that we could all attend together, I'm pretty sure that I don't have the time, energy, or $$$ to organize such a fete (though perhaps my insurance company would like to kick in some cash). And I'm surely not cleaning my own house to have you all over. I love you, but maybe not that much...not right now. Did you not read the paragraph above :violence toward others?? So, if there is someone out there SUPER inclined to be that person, feel free. I'll be there! With my Katy Perry wig. And I will be drinking a mojito!

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.

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.

I Can't Feel My Feet...

What week of chemo did I just finish? 14? Yeah, that sounds right. As I head into the last six weeks of chemo, I wish I could say that the process has gotten easier...or more fun...or become a smoother/faster process. Nope, nothing new on any of those fronts.

A couple of fun side effect "updates" though:

(1) Tastebuds: I have slllooooowwwwllly started to get some of my tastebuds back. Very few. I still can't eat anything that doesn't crunch, and most flavors are gone, but there are some that work so I don't feel like I want to kill people on a day to day basis anymore. I'm not kidding, having no tastebuds was the WORST side effect. You cannot imagine how much you stop caring about everything if you can't enjoy the food you are eating.

(2) Blood counts: White cell counts keep dropping. Now I am back to getting shots each week after chemo. At least they are a smaller dose than the original neulasta shots, so they don't have too many side effects. Just a general achy-ness for a day or so.

(3) Neuropathy: Yep, the slight tingling in my fingers and toes has gotten worse. I currently can't feel my hands, or feet, or lips, or face. Awesome. And my fingers can no longer tell the difference between textures. As in fuzzy wool sweater, jeans, skin, soft fleece blanket, computer keyboard...it all feels the same. Really fun trying to type this, by the way, when you can't really feel the amount of pressure you are putting on the keys. As far as the doc is concerned, this super cool side effect does not warrant much discussion as long as I can still tell the difference between hot and cold. I am trying to hold the numbness at bay now by downing large quantities of glutamine powder (recommended by chemo doc) mixed in my drinks twice/day. Yippee, one more vial/jar/bottle to add to the nightstand. 

Claritin is Worth It's Weight in Gold

Compared to the AC chemotherapy I was getting for 8 weeks, Taxol seems like a breeze (at least right now...KNOCKING ON WOOD). The only real side effect is that I'm a little more tired. Trust me, this is something that I can deal with!

However, one of the other side effects is neuropathy (a numbing/tingling/or loss of function of some nerves, usually in the hands and feet). Well, I think I'm getting this on an intermittent basis right now. It started on Sunday and does come and go. It also seems to be accompanied by joint pain (shoulders, elbows, knees, ankles...are those all joints? I've forgotten my anatomy). Just when you think you're feeling all good and you might actually survive this batch of chemo...WHAM! You've got to have something go wrong!

I have taken to trying the "cure" that worked for the bone pain with the neulasta shots: Claritin. And it works! And I still haven't figured out WHY (which scientist me really wants to know). But I have done enough reading to realize that I'm not the only one it works for, nor is my doctor the only one telling people to try it. I still don't get how anyone came across this remedy. Seriously, who first said, "hey, let's try Claritin. It's awesome for my stuffy nose." Doesn't really make sense...but I don't care. I do wonder if the drug company knows this, because it seems like a whole other market they could be making large sums of cash from.

And before you say that this pain relief is all in my head, a mind over matter type of thing, I DON'T ACTUALLY CARE. Because Claritin is my new favorite drug right now. Thank God they sell it at Costco!

Cancer Pros and Cons

As I'm starting my second stage of chemo, I thought I would take a moment to reflect on the Pros and Cons of this cancer diagnosis...

Cons: These seem kind of obvious, so I'll focus on the ones that annoy me the most right now, and not on the life-altering, you could die ones. Because I'm pretty sure that you could imagine what those are. And I also won't bring up the kind of gross side effects that you don't really want to hear about. There are many posts that I write but never post here, guess you'll have to wait for the book. (Which would be cool, and which AJ wants to help me write).

(1) I'm calling it Perma-cold. I'm not sure if it's the chemo or the steroids (yes, I'm on a mission to blame everything on the steroids...just keep reading), but my nose is ALWAYS running. I have resorted to carrying Kleenex in my purse, in my car, there are boxes on the nightstand, in the kitchen, and on the family room coffee table. I even bring my own box of Kleenex to chemo because the tissue they supply is worse than sandpaper. "Don't leave home without it" has taken on new meaning.

(2) Migraines. Again, I blame the steroids, but there's the possibility that this was the A/C chemo making me feel like this. Let's hope, because after the last round I was laying in the dark with a killer migraine for 6 days. 

(3) Insomnia. Blaming the steroids again. The one nausea med (yes, there's more than one) that I was given was supposed to help with that, but it doesn't even come close. And since it's probably not a good idea to take the whole bottle, I have finally been convinced to get a prescription for Ambien to see if that helps. The doctor says I might actually start feeling better if I get more than 3 hours of sleep at a time. What? You mean 5 hours of sleep a day, and not all at once, is a bad thing? Whoops. Of course, I still haven't stopped by the pharmacy to fill said prescription, so it might be awhile until I let you know how it's working.

(4) Weight gain. I don't care if I'm a sloth, it's got to be the steroids. I also don't care that no one else seems concerned over my gaining 5 pounds in 5 weeks. But I only have one pair of pants that fit right now. I'm going to need to buy new clothes if this keeps up. Can you imagine? Forget "fat pants," I'm going to need "cancer pants." Terrific!

(5) Chemo brain. And it's so bad right now that I almost forgot to mention it. If you aren't familiar with chemo brain, this is a fun side effect that basically makes you stupid. Or at least makes you feel stupid. You forget things, like what you were just about to type, and you definitely can't remember the right words at the right times. It's a little like dementia. I think I've only forgotten each child's name once or twice, but there are many times where I look like a lunatic waving my arms around or snapping my fingers hoping that this will help me come up with the right word. And I've been told that this takes AWHILE to go away, and is sometimes permanent. God help me. This one is my biggest fear because it's pretty hard to teach when you can't remember what you want to teach them.

(6) Hot flashes. I hate to say it out loud, but I think this is chemo-induced menopause. Shhhh! Don't want to think it. Moving on...

(7) Taste bud obliteration. This sucks! God forbid if you ever have to go through chemotherapy, PLEASE call me first so I can tell you how not to have this happen to you. I am slooooowly getting them back, little by little, so it's possible this isn't permanent, but still a monumental pain in the ass.

Pros: Yes, there actually are some. Though, let's be honest, the cons definitely outweigh the good things. But if pressed, there are a few "perks" if that's the word you want to use.

(1) I'm saving money on shampoo, haircuts, and coloring the horrible gray. Although it's possible the cost of the wigs offsets this, but we won't think about that. Mainly because I'm really fond of the Katy Perry wig now and might just be wearing it for every school picture day from here on out.

(2) I don't have to clean up kid puke. When the daughter had the FLU with a capital "F" last weekend, I didn't have to clean it up. Or come anywhere near her. Now, I felt bad about not being able to comfort her (and that she was basically locked in her room), but didn't really miss cleaning up kid puke.

(3) I don't have to go to the dentist while I'm going through treatment. I think there's several reasons for this, but I don't really care. I just heard the "no dentist" part and that was good enough for me. Oh, and I don't have to floss either, but who's kidding who? I don't really floss anyway. Shhhh!

(4) No shaving my legs. Even though the hair on my legs was the last to fall out (and by falling out, I mean that I finally shaved it off), it has not grown back. Cutting this and the shampoo out of the morning regimen means more time to sleep in. Sadly for my energy-conscious husband, this does not mean less time in the shower because I've discovered it is nice to just stand (sit) in the warm water for as long as possible.

(5) People are awesome. It's nice to see this in action, and I do on a regular basis. So many people taking care of me and my family...in big and small ways...we are so grateful!

Taste Buds...Who Needs Them?!

So, a couple of weeks ago I posted about my general complaints...not the obvious "I hate everything and everyone 2-5 days after chemo" complaints, but the day to day irritations about this entire process. 

One of those annoyances was that my taste buds were all out of whack. Nothing tasted like it should, and this is really irritating! I have to say that going through chemo is a little  like being pregnant (only much worse in my case): you crave certain foods, smells really bother you, and only one particular thing sounds good to eat at any given time. I was not above making the husband run to McDonalds for a milkshake at 9 in the morning. And it better be vanilla, because if you bring home the wrong flavor, watch out!

The reason it sucks for your taste buds to be out of whack is that you crave something, like an amazing plate of pasta, and you make someone make it, and then you take a bite and go, "sorry, it doesn't taste right, I can't eat it." FRUSTRATING for everyone involved, I promise! But as annoying as this was becoming (and I'm pretty sure there were days that the husband wanted to kill me), I was starting to acclimate to this change. I had started finding the things that did taste good to me and satisfied the cravings. It was annoying, but I was coping.

And then I clearly made the mistake of complaining about this side effect to some people. The chemo gods obviously thought they'd have a little fun because the next morning I woke up and couldn't taste ANYTHING! And I knew it immediately because I had a sore throat, popped in one of those nasty cherry tasting lozenges, and realized I couldn't taste it...AT ALL. UGH! Throughout the day I tried everything to no avail. Nothing had any taste.

It's been a week now, and I still can't taste anything, so I've given up hope that this is temporary.  And I promise you, compromised taste buds were WAY better than no taste buds. I take back every bad thing I said about them being whack...because I never realized that I should be grateful for messed up versus nonexistent.

I can't even describe to you what it's like to eat things without tasting them, but it certainly has taken a lot of normally tasty items off the menu: rice, pasta, fish, meat...anything soft is just disgusting when it doesn't have any flavor. I'll save you the vivid imagery of what's its like to eat these things.

What I have discovered is that I eat for texture now. If it doesn't crunch, I don't want it. I've been living on broccoli salad (the kind with cashews, cranberries, bacon, and what I'm sure is a tasty onion dressing), pomegranate seeds tossed on EVERYTHING, and cinnamon chex (for some reason, I can actually taste cinnamon on a small corner of my tongue). Also, if something is crazy spicy or has a strong smell (bleu cheese), my sense of smell is clearly compensating. I can't really taste it, but my senses must be creating a taste on some level. We went to Chinese food for my mom's birthday and the only thing that tasted okay were the spicy green beans. They cleared my sinuses and though I couldn't taste the spice, they did taste and crunch like a green bean.

I'm typing this while sitting through my most recent round of chemo. And I'm a little grumpy because I have just learned that I could probably have salvaged my tastebuds by rinsing with salt water and baking soda 6 times a day from the beginning. The doctor was surprised I hadn't been doing this. Well, if someone mentioned it, or stressed how important it was, I didn't hear it. I only heard the baking soda part for mouth sores. Trust me, this is something that I would've been doing!! (She does think I might be able to rescue them if I start this now, which I will be doing as soon as I get home).

Be careful what you wish for is the motto for the day I guess. I never thought wishing for tastebuds that weren't out of whack would bring this on. And let me tell you, if it's too late to rescue them, I'm going to be like this for the next 3-4 MONTHS! Dear lord, I now know where homicidal rage comes from...

Most. Annoying. Symptom. EVER!

In Which I Feel Like a Cancer Patient...and Look Like a Refugee

Today was a return trip to the doctor's for blood draws and lab work. Fun times, I promise. It means another poke or two with a sharp stick (okay, it's a needle), a 30-45 minute wait while they process the results, and at least three different people asking me my birth date. Yep, it's definitely fun not to be missed. But everything comes back "fine," which is code for "not good but you're not going to die" so I'm free to go home.

Today, we are headed to look for more wigs, and then to Target to get my next round of meds and do some shopping. It's just a party a minute when you're hanging out with me these days!

Wig shopping was pretty hilarious. We end up at a costume shop in a sketchy location that turned out to be pretty amazing. And they had lots of crazy color choices, which is what I wanted. The problem with traditional "cancer patient" wig places is that they only have "normal hair" wig options, and that's really not what I want. So, I spent a good 30 minutes trying on everything in every size and color. Green, purple, black, even a SCARY red one (like fire engine red) which Keith thought would look good (it didn't!). The purple one was just not the color I wanted...too much lavender, making me look old...no thanks! The green one was beautiful, but had a permanent zigzag part down the center which was probably designed to go with an alien costume, but just didn't work for me. (And I'm kind of bummed, because it was pretty cool). Black, orange, yellow, lime green...all clearly "no go's" because they make me look sicker than I already feel. 

Then the husband redeemed himself after the red wig when he found my Merida wig. Yes, the cartoon girl from Brave. Even before this diagnosis, I have wanted her hair. That's right, I'm jealous of a cartoon Disney princess, I can admit it. Well, orange isn't really the color for me, so he found the wig in a beautiful auburny-purple color (if I drank wine, I'm sure I would know which red wine it looks most like). And it's long, and curly, and I love it. So does the girl child, by the way. And then I found another wig, which should satisfy the "aren't you getting normal hair" member of the family: long, straight, and a caramel color (according to the daughter). So, now there's three wigs when you add in the Katy Perry blue wig. Should be fun! Though I still kinda want that green one...

After the wigs, we stopped at Target to get my next round of meds (the one that you have to take during chemo...the pharmacy doesn't usually stock it, so you have to order ahead). These meds are like gold, so I have to make sure that I have them in time for the next round of chemo. And we have to get some basic stuff, so we're wandering around the aisles. And this is when I realize that I have felt pretty bad all day: dizzy, out of breath, tired. When we're walking around, I can't even make decisions about what to grab off the shelf because I do not actually care. I really and truly have no energy left to care. I have hit the wall. 

Today is the first day that I've felt like a cancer patient. Really and truly felt like a sick person walking around. I'm sure part of it is this out of breath thing which is new. I'm also sure it has a little to do with the fact that I look like a refugee from a third world concentration camp. We laugh about the stripes and bald spots on my head where my hair has fallen out. There is little hair left now, but it is so cold outside that I haven't shaved it all off yet. (That'll probably happen by Monday).

Home for a nap! I didn't even help Keith bring any of the bags in the house or put anything away. Completely passed out on the couch. And I do not even feel bad about it!

A Different Truck

I think the truck this time only ran over me once.

Don't get me wrong, I still hurt. In fact, I have spent the weekend in the dark because my head hurts so bad. Just when I thought I'd have all this time to read...ha! Everything is blurry. And my head is throbbing and tingly all over (which I actually think means that my hair will be falling out soon...grrrr).

But I do feel slightly better than last time, and as much as it doesn't make sense to me, I'm going to credit the Claritin. It's the only thing that I've done differently, and it seems to have made the collision with the truck easier to manage. And I'm wondering if I can take more than the recommended dosage because it would be nice to feel even that much better!

Any other differences this time? Smells didn't bother me as much, but only certain foods sounded good. I didn't touch a Saltine this time because the thought of them made me gag. As pathetic as it is, boring canned chicken noodle soup was really where it's at. We tried two other fancy deli/store versions and they were just "spicy" enough that I couldn't stand the taste. Apparently, my taste buds are under attack. Foods that I normally like, I don't. Foods that used to sound good, don't. We bought CASES of flavored fizzy water from Costco right before chemo started because I figured these would be a good substitute for the soda I've been known to mainline. I really like all the flavors...or at least I did. They're still sitting in the fridge because now they taste like Alka-Seltzer to me. 

Back to sitting in the dark...the computer is just bright enough to hurt my head...

My Week of Fun

Had my follow up appointment yesterday...yippee, more pokes with a sharp stick!

This happens on day 8 of each cycle where they test my blood to see where my platelet, red blood cell, and white blood cell counts are at. The good news is that platelets and red blood cells seem to be holding on. Bad news, but really not surprising, is that the white blood cells were down. But nothing too dramatic so the doctor isn't really that worried. 

A couple of things I noticed while at the doctor's office:
(1) In the 30 minutes while I was waiting for the labs to process (from blood draw to doctor visit), I think there were no fewer than 57 people that had their blood drawn also. WOW! It felt like an assembly line operation for sure. And is oddly scary and reassuring at the same time...are all these people in the same boat?

(2) Okay, don't take this the wrong way, but EVERYONE in these waiting rooms is old...like my grandparents old. It often makes me feel like that Sesame Street "One of these things is not like the other" segment. And it's kind of sad...is this what a long hard life gets you?

Doctor says that I am doing pretty well, all things considered. Everything I'm feeling is normal, and now that I know what a cycle will be like, I can pretty much predict how it will go from here on out. 

I have had a sore throat since Sunday evening. And my tongue is a lovely yellow color. This could either be the "mouth sores" that are a side effect of chemo, or due to the fact that my children are disease-ridden right now and I've got some version of their plague. I'm voting on option #2. 

My teeth started hurting on Wednesday. WTH?! This was not anything anyone mentioned, but is likely a side-effect of the lowering white blood cell count. Great...who knew brushing my teeth was going to be the worst thing I do every day? Time to brave Target and the diseased masses to get some Sensodyne.

By Tuesday morning I am feeling fine (excepting complaints above) and have developed a massive case of cabin fever. EVERY person that would come and visit me is also fighting off the plague (damn those schools and the germ transfer they promote) so it looks like more time spent with my own sick family. Known germs are better than unknown I guess. I have started memorizing television commercials and have been seen watching Christmas movies on the Hallmark Channel. Anyone who knows me knows that I must be desperate. And if anyone tells my mom I was watching the Hallmark Channel, you are off the Christmas list. I think I might be going a little stir crazy. Just a little. Okay, maybe a lot.

I. Am. Tired. All the time. The doctor smiles when I complain about this, with a "well, duh?!" smile. Yeah, yeah, yeah, this is completely normal. I get it. But that doesn't make me like it. I'm used to being on the go ALL THE TIME, subsisting on 4-5 hours of sleep/night. For goodness sake, I work with middle school kids and most days I win the war. Now, taking a shower exhausts me. So pathetic. And apparently, this is the one thing that is going to get worse. How could that be possible?

I have been out and about a little bit this week...to some really exciting places: the doctor, the post office, Safeway (where I wouldn't touch the cart...icky), the church to drop off some Pantry Pack stuff, and Target (where I really was sneezed on by a small child. No joke, the place smelled like disease). Whoohoo, I am a party animal for sure!

In Which I Am Hit By a Truck

I hope that I am not jinxing myself by posting this, but I think I have turned the corner from the first round of chemo. KNOCKING ON WOOD...

The doc warned that the low point would hit at some time over the weekend, and could continue through day 7 (these first chemo cycles are 14 days, so day 1 = chemo, day 2 = shot, day 8 = labs, day 15 = chemo again). Friday morning I was feeling a little dizzy, but this did not last past the morning and the doctor thinks it was probably the residual effects of the meds I took the night before. By Friday evening, I was feeling a little queasy, but nothing too bad. Again, meds to the rescue! The warnings to keep hydrated and keep your stomach full to fend off the nausea were working. 

Saturday morning was a little different. This is when the nausea really started to kick in. No puking (thank God), but NOTHING sounded good. Very hard to keep your stomach full when the thought of every kind of food in your house makes you sick. I subsisted on cranberry juice, Saltines (my new friend), mac-n-cheese (don't ask why this didn't make me sick), and some horrible canned chicken noodle soup. Keith has called a friend and put an order in for her Italian Wedding Soup ASAP! Trying to be helpful, he ran to the store and bought every kind of deli soup that I liked to no avail. Today I hate everything.

And then Sunday around 2am, I realized what the low point really was. By some miracle of God, the nausea meds are still doing their job (in that I am not actually curled up next to the toilet bowl), but I feel so sick. EVERYTHING and EVERYONE smells bad. Not even the Saltines sound good, but I'm gagging them down. To top it off, I feel like I've been run over by a truck...and it backed up over me for a second pass.

The most mundane smells are making me gag. Keith made hashbrowns for the kids for breakfast and I want to kill him (if only I had the energy). The pretzels that everyone is snacking on (which honestly can't be that different than the Saltines) make me want to hurl. And don't get me started on the container of trail mix that Keith opened. 

I've become "that patient." Nothing makes me happy, the drinks aren't hot enough...or cold enough...and don't ask how many times I made Keith heat up the mac-n-cheese.

I consider parental blocking the Food Network at one point. And WHY is every commercial for FOOD? Who knew there would come a time when I would wish for the male enhancement product commercials instead?!

Around 2pm on Sunday, there was a dramatic turnaround. I'm suddenly craving the kids' leftover pizza in the fridge and I convince teenage boy to heat me up a slice (just one, very small, and make sure it's hot). I manage to eat it without gagging, so I'm pretty convinced I've come out of the darkness. 

And then the glorious soup arrives...a vat of it. THANK GOD!

Notes to self for next go-round:
(1) More Saltines on hand
(2) More 7-Up
(3) More cranberry juice
(4) Lots and lots of soups...any version of chicken noodle, or other clear broth type
(5) Even when you think you're feeling better, choosing to watch a movie about cooking/chefs/restaurants NOT A GOOD IDEA. Wait on that until about day 10.