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.

Chemo, Round 4...Yeah, I'm Over It

Friday was my 4th round of chemo. For those of you actually keeping track, it should have been on Thursday, but I swapped days to buy myself some time see my daughter's theatrical debut in the school play. I was required to wear the Katy Perry wig because said daughter has started calling me "Patchy." "No really mom, I love you, and I think you look great, but you are kind of patchy." Fine, hint taken. But it was nice to be out and she really did rock the stage as quite the sassy milkmaid (Aesop's Fables).

First off, I am so over this whole cancer/chemo/sick person thing. SO. OVER. IT. You wake up on chemo days knowing exactly what you are in for in about 48 hours, and yet you still have to do it. It sucks! Enough said.

The highlight of my day is always the visit from my favorite pharmacist gal. I love how she pops in and says "hi" and sits and chats about whatever (including the craziness of the day or some of the things listed below). Or the crazy teenage boy...or the daughter's school play...doesn't matter. She always takes the time to chat. And if she does this with everyone, and remembers all the details for all of us, then she is pretty amazing! Today's joke was that my gorgeous view outside, which could have been the remarkably sunny, blue skies, was actually the beautiful cement wall surrounding the hospital. 

But I did learn some things today that would have been nice to know before now:

(1) See the last post regarding my complete loss of taste buds and how I probably could have prevented this with a few easy steps. Grrr.

(2) The squeaky wheel gets the grease! Every time we go, the process tends to take HOURS longer than it is supposed to. And I am always so nice. "Don't worry, I'm enjoying my book, whenever you get to it." Yep, I'm probably done being that patient. Friday we came a little early, because I wanted to be home in time to do the actress' hair and makeup before the show. All I had to do was say this to a sympathetic doctor and surprise! Blood draws were moved up, labs were rushed, and an empty chair was magically found. I was out the door earlier than normal, and even got home before school got out. (I wasn't expecting to be home until 5pm).

(3) I finally saw some lab results from a blood draw. Good news: my white blood cell count is off the charts..."amazing" was the word they used. Well, not amazing for you, but amazing for a cancer patient who's being poisoned. In fact, this round of Neulasta shot should be my last. HALLELUJAH! And these high numbers are probably why I've been feeling so much bone pain. Too many white blood cells and no where for them to go. Bad news: red blood cell count not great. Not bad yet, but close. Was compared to a gas tank...25 would be empty 45+ would be 1/2 full. My number is 31. This above all else explains why I'm so exhausted. Why I have to sit down halfway through a shower. Why walking 4 blocks in the neighborhood wipes me out for days. Unfortunately, I have to get this number back up and the only way to do so is to exercise. Damn, just when I was getting used to being a sloth. That couch has a comfortable cushion nicely shaped to my butt.

(4) The weight gain has been explained. Okay, besides being a sloth (see above), I did not realize that they were also shooting me up with steroids at these chemo infusions. (Seriously people, send me a detailed email with all this information. No one, especially someone suffering from chemo brain, should realistically be expected to retain these details). My favorite pharmacy gal laughed at me when I was complaining about gaining 4-5 pounds through this process. It happens to everyone (that doesn't get violently ill). And it won't go away until chemo is done. I am done blaming my lazy ass for this weight gain...It's the steroids! (At least, that's the story I'm selling).

(5) Just when you think paperwork can't get more stupid...HA! So now, you have to fill out a form every time you go in (name, birth date, etc.) and check the boxes that correspond to new symptoms that you are feeling. But if you aren't feeling any new ailments? You still have to fill out the form and write, "no new symptoms." Holy crap! And I now have to SPELL my first, middle, and last name, as well has give my birth date EVERY TIME someone speaks to me. And the trifecta? You now have to wear a sticker around that proves you've been "screened" for cold and flu. The sticker, which is just printed on a laser printer label that can be found at any paper supply store, says, "It's Friday and I've been screened for cold and flu." There's a new one for every day of the week. And if you aren't wearing it somewhere visible, they won't let you back (patient, family, visitor, staff member...everyone gets to play). What's funny about this? Want to know what the screening process is? "Are you experiencing any cold or flu symptoms today?" Answer "no" and you get a sticker. Or print them up yourself at home, I guess. Now, as annoying as this new feature is, I feel most sorry for all the staff that have to wear these EVERY DAY while at work. No thank you. 

So this is my most recent fun. I'll try and post pictures of the play. Did not get a picture with the milkmaid while she was in costume...bummer. 

Off to curl up in a dark room for the next few days and hope no one comes to bother me. Especially if they smell!

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 Find Out if I'm Healthy Enough to Poison...

Today is the last doctor's appointment where they make sure that I'm good to go for chemo tomorrow, and I'm also supposed to get a "chemo teach" where they explain all about the wonder drugs and possible side effects.

First, the checkup. Have I mentioned before how much I love this doctor? She immediately notices and compliments me on my new haircut. She asks me if I've heard the pathology results from the last surgery. When I say only that the surgeon called me an overachiever, she laughs and admits that's pretty accurate. But she says she has the numbers if I want them, so why not?! This last surgery they pulled out a total of 3.5cm of cancer...add to the 1.1 from the first surgery, and the 2.5 from the second surgery...and that's some scary math. 6.6 CM of cancer! YIKES. That alone puts me into Stage 3, even without the weird lymph node lighting things up. It is agreed that I can stop being this overachiever ANY TIME.

Then we discuss what to expect tomorrow, what the PILES of meds in my bag are for and when, what to eat and what not to eat. Sushi, sadly, a no during this process. So are salads, salad bars, buffets (thank God we already went to Vegas). Only fully cooked eggs (bummer on the loss of eggs benedict). And only fruit/veggies that can be peeled or cooked. It was described like this: apple/orange/banana? Wash then peel. Grape? Peel it or cook it (so, no grapes). No salad. Other than this, nothing is really off the table. Although, we did forget to ask about my adored bleu cheese. Damn...will have to ask that tomorrow. No greasy foods was offered as an advisory to make your stomach feel better. This seems like good advise. 

And fluids, fluids, and more fluids! And yet more fluids! 

Temperatures over 100.5, even if you feel great, bring you into the clinic/hospital.

Then onto meeting with "chemo teach" gal. Who is a pharmacist/technician/nurse and adorable. Young, happy, HUGE sports fan (a fellow Husky Keith can commiserate with, who grew up in a Beaver family). We love her immediately and she gets our sense of humor! Will have to come up with clever nickname for her for this blog, because apparently I'll be seeing her a lot. "Husky Girl" seems weird.

She goes over each of the drugs that will be used tomorrow, how they work, what they do, and the side effects. Pretty basic info for anyone that has done this or knows someone who has gone through it, so I won't bore you will all the gory details. But one of the funnier parts was that one of the drugs makes your urine red, and one can cause blood in your urine. And you're supposed to know the difference because red urine is normal and bloody urine is bad, equating to an immediate trip to the hospital. Great! 

I know that she's wonderful when she doesn't even think we're crazy when I say that Keith won't be staying with me tomorrow, and I probably won't have visitors. This is going to be time for me to relax and read UNINTERRUPTED. She's all for it, but promises to stop by and check in.

Off we go...