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!

Speak No Evil

Or, "What Not To Say To a Cancer Patient."

First, before you take offense to this particular post, I want to say that it probably wasn't aimed at you, my dear friends and family. For the most part, everyone has been wonderful to me, and nothing but supportive, and always quick to offer help when I most needed it. And this is not a "rant" against stupidity (although, it unfortunately exists..just wait for my post about the DMV), but rather a way to help all of us be more considerate when talking with cancer patients.

When you are a cancer patient (or probably any person suffering from a long-term illness or life-altering disease), you get asked questions...a lot of questions...all the time. And quite often, they are the same questions over and over and over. This is really because most people are so caring and want to help/understand.

If you are lucky enough to know people that have traveled the cancer journey before you, or with you, or even after you, you tend to bond with these people in a way that I cannot fully explain. Sometimes, they seem to be the only ones to know exactly the right words of encouragement to give you when you feel like crap. So you get together for coffee, or you chat on Facebook, and you feel like you can laugh with these people in a way that others can't quite grasp. And while you're chatting, you discover that you all have the same "pet peeves" when it comes to things that people, well-meaning or not, say to you.

I asked all my "cancer peeps" (yes, that really is how I think about them) for their input on this post. Our roll call includes: Hodgkin's Lymphoma, Testicular, Lung, Thyroid, and 7 Breast Cancers (6, plus me)...so 11 people total. Five of us went to the same high school and are basically all the same graduating class so I wonder if I should do a study of what was in the drinking fountains there and how many of us there really are and whether it's higher or lower than the average. 1 is family, 1 is the mom of a high school friend, and the remaining 4 are friends I have met along the way through school, kids' schools, and sports. One has been "lucky" enough to go through cancer twice, 15 years apart. (UGH! Cannot even imagine...she's my hero). Some are newly diagnosed, some just starting treatment, some just finished treatments, some are one year post-treatments, and a few are lucky enough to have hit their 5 year cancer-free mark.

Here are the questions that I asked: "Do you have one, two, or even ten things that bug(ged) you that people, well-meaning or not, say/said to you? Or things you just got tired of hearing? Whether it was friends, family, acquaintances, or doctors...I'd love your thoughts." (Now, please note, at the time I'm writing this, a couple of people had not yet responded because they are likely enjoying their summer and not waiting around for emails from me. I will update with their responses as needed).

These people were very thoughtful with their responses, and all agreed that for the most part people were supportive and wonderful, as I've already mentioned. Many of us think it's possible we have even been guilty of some of these "no-no's" at one time or another. Several were worried that it might seem like they are nit-picking, but I assured them they were not. I culled the responses and have included our advice to you...in no particular order...here's what bugs us the most...(direct quotes are marked, otherwise I've compiled and paraphrased).

Please do not be one of these people:
"The One Up" 
Every single one of us remarked about this. These are the well-meaning people who want to tell you a story about someone they know who has cancer "much worse" than you do, and how said person is soldiering on. If they can do it, so can you. I'm pretty sure this is designed to "buck up" our spirits. Unfortunately, it has the opposite effect. Here's the thing, we all know someone who has it much worse than we do...we see them EVERY TIME we go in for treatment. (For me, it was the lady next to me, pregnant with twins, who was getting chemo. Yep, my Stage 3 Angry Cancer didn't seem so bad that day). BUT, whether we are in the throws of treatment, or about to start some scary phase of treatments, or even desperately trying to recuperate from the last round of chemo, WE FEEL BAD. And we have a right to feel bad because "it just sucks to be in the middle of it." I'm sorry that your neighbor's mother-in-law/friend from high school/second cousin, twice removed has it worse, but I only have enough energy to care about me, and all your comments do are make me feel bad about myself for being a wuss.

"The One Up, part 2"
My cancer peeps are "young" in the grand scheme of things. Hearing about how your grandma had breast cancer when she was in her 80's does nothing for us. We have young families, jobs, and would like to think that we're pretty active go-getters. "I know they were trying to be well-meaning but their mothers were 70+ when they were diagnosed, not 42! Come on, I have young kids and a whole life." Not to mention the fact that cancer medicine has advanced GREATLY in the last few decades, so these experiences, while sad, are completely irrelevant to our situation.

"Compare and Contrast"
Please do not compare your health "crises" and experiences with mine. Now, I'm the first to raise my hand and say that I'm sure I do this with my cancer peeps (but we're allowed, because we try and garner info from each other about what the unknown is like), and I apologize to anyone I've ever done this to in the past, and know I'm working really hard NOT to do this ever again. But please do not talk about your benign lump or your hazy mammogram results or how it was a scary couple of days for you thinking you might have cancer, but thank God you don't. Now, if I'm joking about my hideous MRI, and you've had one also, please, feel free to commiserate about that. But your experiences are not mine. Which leads me to...

"I Know How You Feel"
NO YOU DON'T. Even if you've had the same drugs, and the same doctors, and the same diagnosis. You have no idea how I feel. Every time I hear this from someone (usually a random stranger out in the community, or someone over the phone I have to deal with when "discussing" insurance...or the DMV), I want to lose it. If you take nothing else to heart from this post, please do not ever say these words again.

"God's Plan"
I am the first to admit that I'm not the most active church-goer out there, but I definitely believe in God, and pray for strength a lot. However, I'd like to think that he is not a mean and vindictive god who would want me to feel this terrible. Telling me my cancer is "God's plan for me and is my cross to bear" just doesn't work for me because I disagree. Perhaps, years from now, it might be appropriate to have a discussion about how having cancer changed my life/life plan, but not now. Not while I'm right in the middle of it. All this will do is make someone stop believing in God, or start hating God.

"God's Plan, part 2"
Or, "But you're such a good person." Again, cancer sucks. Random, stupid, and angry are all words that I use to describe it. Believe me, I've given quite a bit of thought to "wow! You'd have thought I would have some good karma points stored up." This is okay for me to think...but not at all helpful for you to say.

"Be Positive"
This is kind of "God's Plan, part 3" in my opinion. Yes, I think that attitude is a key component, and my cancer peeps completely agree. However, telling someone "attitude is everything" or "if you just have a positive attitude, it will be okay" is JUST NOT TRUE. I've been told I have a pretty remarkable attitude considering what I've been through, and they keep finding cancer every time they do a surgery or a scan. And then I get pissed and hate everyone. And then I feel guilty for not having a positive attitude. Lather. Rinse. Repeat. Attitude helps, but a positive attitude is not going to cure you. It is okay to feel bad and a cancer patient needs that permission not to be happy all the time. 

"How Are You Feeling?"
Especially when it includes that look of pity in your eyes. This was one of my personal pet peeves and I'm glad that I wasn't the only one. I felt I was jinxing something if I answered, "not too bad." Wow, if that isn't asking the chemo gods to rain holy hell down on you, I don't know what is?! And if the reverse is true and I'm not doing well, you don't really want to know all the gory details, so I just wouldn't tell you. The sentiment is nice, but this is just not the right question (see below for what to ask instead).

"You Look Good"
The hell I do. What you really mean (ie: what you're amazed about) is that I don't look like a Holocaust survivor, which is how you think a cancer patient should look thanks to movies/TV/your grandma's cancer experience from the 1970s. Even if, God forbid, we really do look better than we've ever looked in our lifetime, we feel LIKE CRAP. We don't recognize the person we see in the mirror. Tell me I look good bald, that eyelashes are overrated, that my coloring seems good today...find something meaningful and specific...and maybe even funny. Anything other than something that sounds canned, and is really just a well-meaning lie. In this same category are "someone as young and healthy as you" which I hear from my doctors all the time. I HAVE CANCER...I am not healthy. Pick different words.

"The Health Nut"
This one was a hot button for us. We've all run into the person who says "I eat this or don't eat that" or "how they never drink milk because of hormones and all the other things they are careful not to eat, blah, blah, blah."  As one friend put it so eloquently, "Helpful? No. Interesting? Hardly. Even if it were, it's a bit late don't you think?" Another said, "that's great for them but 1) I have already been DIAGNOSED with cancer and don't need any guilt on health habits and 2) HELLO, I am triple negative - hormones aren't a factor in my type of breast cancer.  *SIGH*" 

"The Cures"
Again, I fully believe that curing my cancer is a process and should involve a lot of different elements like traditional and non-traditional therapies. But why must we feel the need to perpetuate the chain letter email that if we just eat 12 pounds of bananas every 3rd Thursday we will be cured, and here's the true-life case of the one person, 300 years ago, that it happened to. Please don't get me started on what I think of these "cures" (magic potions) and whether they actually work. One of my peeps shared how a well-meaning person sent an article about "willing away the cancer through positive body-talk." Now, if you had my EXACT type of diagnosis, and you thumbed your nose at Western medicine and ate those bananas and you were actually cured, then sure, let's talk. I'm open to incorporating bananas into my diet. But I'm going to make it a PART of my treatments, and not rely solely on them...or any type of treatment for that matter. If you really want to find a way to help me get better, offer me the name of a personal friend/family member/your own doctor that works with cancer patients so that I can have another name to add to my arsenal.

The Dumb Questions:
I kid you not, I'm not making any of these up.

"How did you catch it?" Repeatedly asked. My friend that survived testicular cancer has the best response: "Seriously? Toilet seats. Always use the ass gasket, otherwise you'll end up with testicular cancer. Tell your friends." Guess what people, you don't "catch" cancer. Just saying...

"Are you a smoker?" Top of the list for lung cancer patients. First, I have to say, think about what you are going to say when you hear the answer to this question, regardless of what it might be. If he/she says "no" are you going to say, "sucks to be you"? If they say, "yes" are you actually going to say "then I guess you should have expected it?" Honestly...this kind of falls into the "How did you catch it?" question above.

"What are your chances of survival/recovery?" "What does this mean for your kids?" "Are your kids going to get it?" Most cancer patients don't want to talk about statistics and percentages as it pertains to whether they are going to recover or not. Honestly, the "odds" of my 5 year recovery is pretty crappy all things considered (somewhere in the low 60% range), but I'd prefer not to think about that as it doesn't do me any good, thanks for asking. And I'd prefer not to have a long conversation about what this means for my kids, or their genetic makeup, because it's scary enough thinking about my own cancer. And I was trying not to think about my kids having cancer, but thanks for putting that out there because I needed one more thing to stress about.

An extreme example of compare and contrast: "I was going to get my hair cut during my recovery period for reconstruction. The well meaning hair stylist compared my reconstruction (from a mastectomy) to her 20-something friend who had a "boob job" because she was tired of her "A" cup." To this I must just say, use your brain people...use your brain...

Now that I've probably offended every last one of you, let me reiterate, that is NOT MY INTENT. You are all good people! You say and do the right things. My (our) hope is just to provide you with an insight into what your questions mean to us. 

So, what can you say? Or what should you say?

"I am so sorry you are going through this."
"I am here for you." (But don't say it if you really aren't prepared to be there. Or be very specific with what support you are able to provide. For example, "I can drive your kid(s) to soccer practice" or "I can run to the grocery story for you" or "Do you need a ride to the doctor?").
"Whatever you need..." (Again, see above. If you're really willing to clean my house, offer it up. If you're happy to have my kids spend the night, please take them. If you'd like to organize meals from friends and neighbors, that'd be lovely).
"What do you need?"
"How is your day going?"
"Do you want to talk about it? Or not?" (I have friends that are very good at NOT talking about cancer at all when we are together...it's a great opportunity just to be a normal person for awhile. This is something we ALL want).
"I am at the store, do you need anything?"
"Is there anything I can do to help?"

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.

Pain, Pain, and More Pain

So, you probably thought that you were keeping up with the blog. 

And now you feel like it's been awhile without any news and you're thinking maybe you weren't on top of it after all and must have missed some posts.

No, you haven't. It has been more than a few days since I posted any updates. Here's why:

(1) Reading like a crazy woman because it is about to be Summer Reading season and I MUST get my list done!

(2) Getting everything organized for the last week of Pantry Packs for the school year...HALLELUJAH!

(3) I have been in CONSTANT pain. And let me clarify what this means. Today (Weds. 6/5) is the first day in 10 DAYS where I haven't felt like I wanted to die. For some reason, I woke up the Saturday of Memorial Day weekend in pain from head to toe. Not just a general achy-ness, but total body pain. Of the stabbing/shooting pain variety. 

After 4 days, Keith was calling the doctor because this clearly cannot be normal. I do not look right when I move (if I can move), and there are times when I'm brought to tears. Around day 5, I am finally able to put into words what is going on: you know those spikes that some people wear on their shoes to aerate the lawn? It felt like a 400 pound man was wearing those and walking all over my body, ALL DAY LONG. 

3 Tylenol and 2 Ibuprofin every 4 hours was not making a dent in the pain. And I refused to take the good drugs (Oxy) because that's not really a solution in my opinion. (Though one friend suggested taking enough Oxy to put myself in a coma for 4 days and then maybe when I woke up the pain would be gone. By day 7, I was actually considering this, if only I'd been able to get the dosage correct).

What's really special about this entire cancer/chemo/treatment process is that feeling bad is the new normal. If you talk to anyone that I interacted with last week, I appeared to be okay. At least, I was upright and functional most of the time. It's sad what you get used to experiencing.

But today, KNOCK ON WOOD, I haven't experienced the stabbing me with steak knives pain, so I'm hoping I'm in the clear from whatever the hell this was. Doctor has no real answers except that everyone experiences chemo differently, and it is not unusual to have delayed side effects. Great! Any more surprises up your sleeve?

Music Monday, a Little Early

I am posting this Music Monday a little early. And yes, I know that I have already used it as a musical inspiration. 

However, this song needs to be posted today because a new friend for life starts her chemo journey today, and I just want her to know that I'm here for her!!

Prayers to you my friend...and to anyone else out there that needs it!

A Milestone!

CHEMO, WEEK 20 is here! 


The LAST one! 

Hallelujah!

Unfortunately, not much to tell until all the scans and follow-up doctor appointments next week (seriously, there is at least one every day). But for now, I am celebrating the END of chemo!

Here's a picture of me on my way to the last treatment Tuesday...Stupid Cancer, indeed!

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.

Did She Just Call Me Old?

This past week during chemo, I was talking with the doctor about all the symptoms that I'm feeling. Or rather, not feeling since everything is going numb little by little. 

I started by talking about how I can't feel my hands, or feet, parts of my legs, sometimes my face...boy, neuropathy sure is fun. Then I was mentioning how I had been in excruciating pain before the trip. Probably an 8 out of 10 on their smiley-to-frowny face pain scale (which is pretty funny, actually. At some point I'll have to get a picture of it so I can post it here). My shoulder had been hurting so bad, I was considering stopping the chemo if it got any worse. 

Well, now my shoulder is just numb. I can't feel anything...pressure...temperature...not a thing. Super. So, the pain is gone for now, but the neuropathy is getting worse. Ugh.

And while I'm complaining, the doctor asks, "Is it possible that you're just old and that's why you're feeling this pain?" Did she just call me old? Did I just pay for that? As Keith pointed out, the teenage boy can tell me that for free...and does ALL THE TIME. Well, that sure got the doc laughing (which is now our goal each week). 

All this time you've been telling me I'm "so young and in good health" and now I'm old?! And if I am, it's only because chemo has aged me a thousand years during this process! 

Thank God there's only two more weeks of this to go. While the doc does think that the symptoms will just get worse over the next few weeks, and reminded me that neuropathy takes a LONG time to go away after chemo is done (and sometimes it never does), she did remind me that we are so close to the end/goal, that it would be a shame to stop now. So, persevere I will.

But I'm not sure that I'll stop complaining...

And I guess it's time to start getting religion with the glutamine (which is HORRIBLE, by the way. Makes every drink taste and feel like chalk).

Airplane Travel

If you're keeping up to date here, you will know that we recently went to Vegas for spring break. It was SO NICE to get away...and SO HARD to come home. I will be attempting to catch up with all the posts I've been making notes about in the next few weeks.

First, I want to mention how scary it is to travel while going through chemo, especially on an airplane. Here's what I looked like traveling:

Awesome, right?! And if you think that this garnered me any special privileges, you would be wrong. (Well, to be honest, I didn't ask for any). I dare you to travel through TSA security looking like this. It's fun, I promise! 

I was able to board early as a "person needing extra assistance," though I'm not sure this was the best strategy as you end up sitting on the plague-filled flying tube of death longer than anyone else, soaking up all those germs. The highlight? The toddler that SNEEZED ON ME while walking by. Literally. My jeans were soaked with his germs. EWWWW!

But the mask did save me from catching the plague. Other people got sick from the plane, but not me. I am considering wearing this anytime that I fly. When you see those people wearing them in the airport, you should probably not think they're as crazy as they look. Who knew that they were really pretty smart?!

Chemo, Week 18

Holy Crap! Who's idea was it to do chemo at 9 o'clock in the morning when coming home from vacation at 2am???? What moron thought that was a good idea? That could not possibly have been me, right?

Yes, I had to come back from a gloriously relaxing week of vacation directly to week #18 of chemo. Really tough to be motivated to do that. In fact, when the alarm (my husband and teenage son) went off at 8:30 to say "GET UP!" I rolled over, cracked one eye open, and said, "Hell NO!" Yep, I became that patient. There was no way that I was getting out of bed. In fact, it's possible that I said something like, "I double dog dare you to get me out of this bed." It had to be something like that because the teenager was laughing. I probably sounded like him when he's been woken up.

So, the loving husband, who could sense his life hung in the balance, called and moved the appointment to 12:45pm. So much better. Well, except for the fact that getting there after noon meant we didn't end up leaving the hospital until close to 6pm. It was a LOOOOONG afternoon.

Nothing eventful happened...

And guess what that means? Only 2 more chemo treatments left (which will now be on Tuesdays). It's almost unbelievable to think about. I might actually make it to the end of this first part of the journey.

Chemo vs Field Trip...Tough Call

Today is Chemo, Week 17. And it's also the day of the "best field trip" of 5th grade: Marine Science Afloat. Since I obviously have to be at chemo (and I don't do ANYTHING related to boats and/or water), Keith volunteered to chaperone this one. 

Yay for the friend who volunteered to come with me (read: chauffeur me) to chemo. And she bought me lunch. And she got to experience the mind-numbing boredom that is sitting at chemo. Yes, that is a good friend!

I do want it noted that I actually got the better end of the deal this Friday. It is COLD and WINDY out on the water and the kids are dropping like flies (puking up a storm) on this field trip. A car full of giggly 5th grade girls, plus choppy water, plus boat ride, plus the smell of vomit everywhere? Sounds like an awesome time--NOT! 

In this battle of Chemo vs. Field Trip, chemo definitely wins.

Though there is a great picture of Keith and another friend pretending to be "king of the world" a la Titanic. Hilarious!

It Starts to All Look the Same...

If you haven't checked out the blog in awhile, you're probably thinking that you haven't missed that much. You might be right, depending on how long it's been. Hmmmm, why is that?

BECAUSE IT ALL STARTS TO LOOK THE SAME!

It's like being pregnant, only WORSE, because the closer that you get to the end, the longer and slower the days go. Holy crap, I have completely lost count of where I'm at. So, let me try and update you:

After my uber busy week last week, I have pretty much curled up into a ball and died a little this week. So exhausted! And in pain (more info on that will follow).

Tomorrow (Friday) is Chemo Week #17! Only 3 more to go...Hallelujah!

We are going away for spring break! The doctor said that I could delay the next round of chemo a few days, and she okay'd a short plane trip. Vegas, here we come! Which is actually kind of funny because it may only be a two hour plane ride compared to Hawaii's six hours on the flying container of plague, but I'm pretty sure that Vegas has to be a hot bed of diseases from all over the world. Oh well, I'm just grateful to get away to somewhere warm, that isn't my house or the hospital, and pretend that I'm not a cancer patient for a little while. I wasn't going to nit-pick details with the doc.

My weeks pretty much look like: chemo...blah, blah, blah, sleep all day Sunday....blah, blah, blah, try and walk Wednesdays and Thursdays...blah, blah, blah, start it all over again on Fridays. Throw in some teenager angst (I'll be devoting an entire chapter to this in the book someday, should there be one), some kids' sports, a husband that coaches or refs just about every night, and a family that expects to eat every night (which is one of the most annoying things that they do because I could CARE LESS about dinner)...blah, blah, blah. When is it going to end?! 

Aren't you so jealous of my exciting life?

Why Don't They Tell You These Things?

Another in a long list of things that would be GREAT if they told you up front: my hair is starting to grow back. Which I was told wouldn't happen until well after chemo had ended. 

So, when I have to shave my legs on Sunday...and notice that there is slightly more hair on my head on Monday morning than there was the day before...I do what most people in my situation would do. I FREAK OUT! Because surely this means that the CHEMO ISN'T WORKING, right?! 

MAJOR freaking out going on here over the past few days. I've decided that all hope is lost and started considering plans that I should be making. Seriously, it's a little scary to think that all this time and effort I've put in to something that has made me feel like crap and now might not have worked. UGH!

Well, I broke my own "don't look up anything on the Internet" rule (seriously, it is a good one because the stuff you find online about cancer is CRAZY talk for the most part. And can be confusing and contradicting). This morning I typed in "hair growing back during chemo" and I discovered a whole host of women asking the same thing. Because we're all freaking out, for obvious reasons. Because they tell you your hair WON'T grow back until chemo is done. From what I can tell, every single one of them on the WebMD and BreastCancer.org blogs about this topic were all on Taxol, and all had 4 weeks left to go when their hair started growing back in small amounts. (All still had their eyebrows and eyelashes falling out though, which just doesn't make any sense, but is exactly what is happening to me).

Imagine that! That's me. 16 weeks in, 8 of them Taxol, 4 weeks of Taxol to go...presto.

At least I can breathe a small sigh of relief, right? I won't die before my next treatment. Or make myself crazy imagining the worst. Is it really too much to ask for someone to type at the bottom of the pamphlets, "Hey, don't worry if your hair does start to grow back when you have four weeks left to go. It happens...don't freak out. The chemo is still working."

Students Organizing Benefit

Looking for something to do next Friday? Here's where I'll be. Some of my former students are organizing this event 3/29 from 7-9pm at the Old Fire House Teen Center in Redmond.

Now, fingers crossed that all will go well next week. I'm scheduled for chemo that day, but am hoping to cut back on the Benedryl so I can be there to see everyone...sporting the Katy Perry wig of course!

Be there!

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. 

What Week Was This?

One of the hardest things about chemo is that you have to get up and get ready every week knowing what you are in for: a long day of BORING, being poked and prodded, and then all the icky side effects that are headed your way in the days to come. Weeks start to blend together and all look alike. 

Today is another chemo day, but I'm not really sure which one this is as I'm sitting in this chair. Blame it on chemo brain, blame it on the fact that I am completely over this whole process. I think this is week 13? Yeah, let's run with that..."Lucky 13" it is!

It's actually not a bad day, all things considered. 

(1) The view from the window is sunny (though with some encouragement from a friend I am going to start figuring out how to be outside in the sun while getting chemo. I think it might involve some kind of superhero battery backpack as the IV set-up requires electrical...or a REALLY long extension cord). 

(2) Keith is on his way back here with my lunch. I really should be a paid Subway endorser because that's all I eat.

(3) I actually LOST THREE POUNDS this week. See several of my previous posts for my issues with that. Now I have proof that it was the steroids. Yeah for week 2 without them!

Now, if only the port would cooperate and give up blood for the labs so we could get this process started, the day would be complete. This is the third week in a row that they've had issues with the port, so I fear what this means for future weeks. But, we'll think about that another time.

And I clearly might have to write a post about how to behave if you are a visitor in the hospital since there is a VERY ANNOYING GUY talking LOUDLY on his cell phone outside my infusion room. I appreciate that he moved away from his friend/family member's "room" when taking his "very important call." However, he moved right outside MY room (which, keep in mind, doesn't have a door) to talk...for a long time...and I have headphones on and can still hear him. I am considering running him over with my IV stand. Bad. Hospital. Etiquette. Monumentally Bad!

I Revolt...And Win The Battle

Yesterday was the 12th week of chemo! Eight more weeks to go! A small milestone to celebrate. (There are many more surgeries and treatments after chemo, but this is a start). However, it marked another milestone: I won a battle with the doctor!

It all started with the typical weigh-in...this week I gained FOUR MORE POUNDS...IN A WEEK. That's SEVEN pounds in TWO weeks for those of you keeping track, and 12+ pounds in the nine weeks I've been keeping track. That's 10% of my body weight!

Let's just say, I went CRAZY. As in every nurse at the check-in desk started laughing at my ranting. Here's the thing, don't keep weighing me every week (which implies this is an important thing to track) and then not expect me to notice the number on the scale. Four pounds in a week? How do you do that? 

My very loud rant at the scale (which was very humor-oriented, not screaming-scary-crazy person ranting), continued with the nurse assigned to me. Lucky her! Keith, the nurse, and myself did have a GREAT laugh over this. Especially the one question where she has to ask, "Is anything swollen?" Yes, apparently my ass is. She was laughing so hard, she couldn't continue the questionnaire...and decided she probably shouldn't write that down. (Though I did double-dog-dare her to). I blame the steroids for this weight gain and said I was THROUGH with them. The wonderful nurse said I was welcome to bring it up with the doctor (and wished me luck, because she knew this was a mighty impossible battle to win).

When the doctor walked in about 30 minutes later, we laughed that the nurses hadn't warned her to stay away. I semi-calmly voiced my concerns about the steroids and this crazy weight gain. I mentioned that I was going to have to start billing my insurance for new clothes because nothing fit anymore. She listened to my concerns, agreed that the steroids could be the cause, and then she looked at my chart. "Wow! You weren't kidding," she said with wide eyes. No, I wasn't joking. Thank you for recognizing that gaining four pounds in a week is concerning!

Long story short, I win! She agreed to drop the steroids from the pre-med infusion regimen! HALLELUJAH! Now, I will have to wait until Friday to see if it makes any difference. Fingers crossed...

(Also, I am composing a post soon about weight gain, breast cancer, and chemo because it is a dirty little secret that no one talks about. I think that people facing this diagnosis should be prepared for all the things that they will face).

Biggest Loser in Reverse

The weight gain continues...Friday's scale reckoning saw a 3 pound weight gain in the last week. THREE POUNDS in seven days. That's what some Biggest Loser contestants LOSE in a week. Add that to the 5-6 pounds that I've gained since Christmas and that's NINE pounds gained in 8 weeks. 

So tired of hearing that it's because I'm not active...or my system is all messed up...once I start exercising it will get better. NOT TRUE! I have been getting out walking this week (and saw a three pound increase in spite of it). I drink more water than any person I know. And I don't actually eat all the "bad" things I used to because they don't taste good anymore. There is clearly something else going on here.

But no one takes me seriously when I complain that none of my clothes fit. My concerns are dismissed because I "look healthy." Here's the thing though, if I was any normal person with concerns about gaining 3 pounds in a week, my doctor probably would take me seriously. That's quite a bit of weight for someone my size to put on in a week...it would take a LOT of effort to do it.

I am convinced that the steroids I am given play a huge (ha, ha) roll in this. If there is one more week of weight gain, I might go postal on someone...stay tuned...

Allergic to Tape? Of Course I Am!

Because it has become quite a comedy of errors on chemo days, I thought I would post about my latest adventure.

Friday was my second round of Taxol, which is honestly WAY better than the AC dosing that I was getting. It is SUPPOSED to take about an hour for the infusion, plus 15 minutes or so for pre-meds, plus about 30 minutes for lab work. So, all told, I am only supposed to be there for two hours TOPS. At least, that's what they keep promising. Hasn't ever lived up to that. This past week was the kicker: arrived at 10:30am...left the hospital at 4:15pm. I wish that was a joke.

One of the biggest snafus that day was my allergic reaction to...medical tape? Band aids? The infusion needle stabbed into my port? I'm not sure, but it was immediate and painful and caused MASSIVE delays as I threatened to rip out my port.

Here's what I looked like about 10 hours after the reaction:

You can't really see the port in this picture, but it was so red it appeared to be on FIRE! And here I thought I'd have to save Allicia Keys' "Girl on Fire" for a Music Monday during radiation. Maybe not, because I was truly on fire.

Thanks to several people who have offered suggestions to solve the problem this week. Will let you know what works!

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!