The Results are In!

It dawned on me today, after being questioned by numerous people at work, that unless you happened to see the post on Facebook over the weekend, you probably didn't know the results of my latest scans and appointments. Whoops! I forgot to post the news here! 

It's been kind of a whirlwind weekend (more on that later), but I wanted to get the word out to all of you that were wondering.

It was a "good news" kind of appointment. Kind of weird actually, because I don't normally have those, but I'm really looking forward to many more of them!

1. Blood work and scans all look good! Well, for the most part. I still need an MRI to confirm these results because several areas not seen by mammogram. (The MRI is not for several weeks though, so stay tuned).

2. Prescription for new meds in hand. These meds still might make me crazy, but at least I'll have a baseline and can compare which med made me the least crazy.

3. Dr. has heard the story of my HORRIBLE experience at the Seattle office through the grapevine and has decided to complain on my behalf in hopes of instituting change for others.

4. Dr. also feels that billing department hasn't been nice to us, and has decided to champion that cause on my behalf also.

5. Reasons why I LOVE my doctors confirmed!

6. We ended the afternoon at a friend's house where we brought lunch in exchange for seeing her twin babies. It was a good day all around!

Doctor did bring up some interesting points, which I am pondering, and may write more about in an upcoming post.

Was the Tamoxifen really making me crazy, or was it that taking it every day was a constant reminder of having cancer? Well, I grant her there might be some credibility to that argument, but I vote CRAZY. Ask anyone, especially anyone forced to live or work with me. CRAZY! And whatever the reason, since I stopped taking it, I'm starting to feel slightly more sane. Will fill the prescription this for the new drug she prescribed and start taking it soon to see if there's a difference. 

She's also concerned that my dire need to not live in my house anymore isn't going to make me better. She called it "bringing your muddy shoes to a new house." Dealing with my issues will make me feel better than moving to a new house. Or at least, that's what she thinks. And to this, I respectfully disagree...until proven otherwise. New house, new car, new life...all of it is about celebrating being alive. Embracing the things that are actually important. Simplifying. Enjoying. Finding a new place in the world where I'm not reminded of being sick. Life's too short...time to start living the dream.

So, that's my news for now. Thank you for all your prayers, support, messages of love...

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.

Taxol Takes it's Toll

Friday was Chemo, Stage 2, Round 1. The first of my 12 weekly rounds of Taxol. This is where you will find me every Friday from now on: sitting in my chemo chair. Today was kind of nice because the sunshine was streaming in through the windows and it felt a little like spring (at least until the sun went behind the clouds).

So the first 8 weeks of chemo (A/C) were designed to kill me, and I have to admit that there were days when I thought it was going to. But I have come out the other side, and have been promised that these next 12 weeks are going to seem rather mild by comparison. FINGERS CROSSED! KNOCKING ON WOOD! Whatever needs to be done to make that come true!

Now, please don't think that Taxol is going to be a breeze. There are rumors that I might lose my finger and toe nails by the end of this process (doesn't that sound like awesome fun?!). And another fun side effect is that I will get even more tired than I already am. For example, the doctor warned that somewhere around day 3 every week I could suddenly feel a desperate need for a 3 hour nap in the middle of the day. I'll let you know!

And there is also the possibility that you could have a horrible allergic reaction to Taxol...like call the ER and shoot me with an epipen allergic reaction. Sounds great! But, I managed to make it through the dosing without that, so strong possibility that won't happen. Again, FINGERS CROSSED!

But because of this possibility of allergic reaction, I was dosed with massive quantities of Benedryl as part of my pre-meds (saline, steroids, Benedryl...and probably something else...I stop paying attention sometimes). So. Much. Benedryl. Quantities that caused me not to really remember what else happened on Friday. Keith left and came back with lunch. I ate it. I got a visit from my favorite pharmacy gal (maybe I'll just start calling her FPG). And then, I passed out. For an hour and a half until it was done and Keith came back to pick me up. Thank goodness I brought my comfy blanket.

And when I got home? I slept some more. Because I was super groggy and a little loopy. Had planned on posting this last night, but friends don't let friends post while hopped up on Benedryl.

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

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

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

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

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

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

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

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

In Which I Am Hit By a Truck

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

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

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

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

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

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

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

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

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

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