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.

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).

VEGAS!

Vacation is FUN and relaxing and I'm so glad to be on one after what seems like FOREVER. Yes, I know, it really hasn't been forever...I tend to exaggerate just a little. But it is nice to go somewhere and pretend you're not really a cancer patient.

A couple of notes about vacationing in Vegas when you are sick:

(1) Not the cleanest, most smoke-free city in the world by any stretch of the imagination. Have been trying very hard not to touch elevator buttons or escaltor hand rails. Also trying not to sit near anyone with obvious symptoms of the plague and/or smoking like a chimney (yeah, super easy to do here).

(2) Want to have some fun? Wear a mask through TSA security at the airport like I did.

(3) Having no taste buds means that your eating options are limited. Luckily Vegas has a million restaurants. But, I have to check out the menu first to make sure that there is something that I can eat before committing to a particular establishment, so we've become those annoying people that spend an hour blocking access to the menu posted outside the restaurant.

(4) There is no 5 second rule in Vegas. If it falls on the floor, it's over. 

(5) I am not supposed to sit in the sun (stop laughing). I had to borrow several hats so that I could hang out by the pool and soak up the warmth. No wearing the wig 24/7 since it tends to get a little sweaty.

(6) My neuropathy has gotten SO MUCH WORSE (will post more about this later). Currently I cannot feel my hands, feet, a big section of my left shoulder blade, and part of my chest. Since we've been walking most places, not feeling your feet makes for a really fun time. Especially when you have a cross between Vasco de Gama and Speed Racer for a husband. Now, the good thing? It's Vegas...everyone just assumes that I'm drunk.

(7) As the kids pointed out, "Mom, you fit in here." Meaning me and the Katy Perry wig look relatively "normal" here (for Vegas). People don't stare quite as much. It's actually kind of nice. 

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!