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.

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...