Surgery on Monday was an adventure. Here are just some of the highlights:
We were required to be there at 6:45am for check-in. I'm not sure that surgery was scheduled until 9am, so this always makes the day even better...because I "love" getting up early.
For future reference, it is not advisable to do any of the following things that I did:
(1) Because I feel like I'm an "expert" at this whole surgery thing, and this trip to the hospital was for my 5th surgery, I dodged all of their pre-op phone calls asking about my height, weight, allergies, overall health, etc. And where they also give me the "don't eat after midnight" speech. Yeah, whatever. If you don't have all my medical history in front of you by this point, I'm kinda scared for you. And if anything is glaringly absent, I know that I'll be required to answer your questions all over in the morning anyway, so those calls went straight to ignore. (Yes, I've actually memorized which phone number each unit of the hospital calls me from).
(2) When checking in, it's probably a good thing to know which doctor is performing the surgery. Turns out the staff didn't like the "Hmmm, I'm actually not sure" answer. Bonus points to Keith for knowing his name "starts with an I."
(3) When checking in, part 2...also good to be able to communicate what type of surgery you are having. "I'm just here for the ride" did not go over well as an answer to that question. But did accurately convey my attitude.
(4) They also don't find it funny if you cannot find your insurance card...EVEN THOUGH YOU'VE BEEN TO THE SAME HOSPITAL AT LEAST 300 TIMES IN THE LAST YEAR FOR A VARIETY OF TREATMENTS AND TESTS AND APPOINTMENTS, AND HANDED YOUR CARD TO SOMEONE AT LEAST THAT MANY TIMES, AND YOU DARE TO ASK, "Don't you have it on file???"
I'm pretty sure to pay me back for these outrages, and my laissez faire attitude, karma got me back by way of a nurse who could not put in my IV. Two blown veins (see picture below) and another nurse later, and the third time was the charm. But wow, did that process ever hurt! And took a really long time.
Again, I don't remember much about the process. I'm sure that I was wheeled into the room somewhere around 9am. I have a vague recollection of being put on the coldest pillow of ice ever, but that's about it. I think I woke up in recovery at 10:15am, so maybe that 9am time can't be right. And, quite honestly, I was out the door by 10:45am, pain meds in hand. (At least I do always know to say "no" when asked, "Are you going to be staying overnight?").
How I've felt the past few days? Like I was stabbed in the stomach with a steak knife. Oh wait, I was.
I have three lovely 2 inch scars in my abdomen now...one through my belly button. These feel awesome and make doing anything fun. Did not realize how much I used my core muscles before now, but they sure would come in handy for things like sitting up, standing, coughing...breathing. Teenage boy was making me laugh last night and it hurt so bad. Couldn't yell at him to stop. Or beat him up. And he knows it!
This anesthesiologist decided to stick a tube down my throat while I was under, and I have to say, I think he JABBED it down my throat and RIPPED it back out because I still have a sore throat. Not the gentlest of touches to say the least.
Another fun feature of the surgery was that they filled my abdomen with gas in order to get around the intestines to all the parts that needed removing. This gas does not all disappear right away. It makes your stomach (which again, feels like it was stabbed with a steak knife) bloated, and causes unusual pains in your shoulder. (Don't ask...I'll explain it to you in person). Super fun! Kinda feels like I just had a baby via C-section.
Tonight is day 3, post-op. I can walk around slowly, but not standing upright; I can roll myself out of bed or into a sitting position, albeit very precariously; coughing, laughing, and taking deep breaths are killing me; and absolutely NO lifting anything.
Doctor said that I would probably be "back to normal" in about a week. That's funny, and considering said doctor is a man I'm kind of not surprised by this attitude. I couldn't even imagine going back to work on Monday. How's a person supposed to put on a seat belt???!!!
I realized the other day (or maybe a month ago and I immediately forgot again until just the other day) that I had only posted recent pictures pics of the "new me" on my Facebook page.
So, I thought I would post a few here to keep you updated on what I'm looking like.
(1) What my nails look like still if I let them grow out. I'm hoping that you can tell from this picture how the longer they get, the less they are attached. So then I have to cut them short...and then when they grow out the process starts all over again. So much for that career as a hand model.
(2) The Sharpie drawing all over me for radiation simulation. The blue dashes mark the entire area that is radiated (it goes from sternum to armpit, collar bone to below my left breast). The black dot in the middle of the "cross" that you can see is a permanent tattoo...and there's a matching one in my armpit. Damn. I was really hoping for something much cooler. At least an "X" marks the spot kind of tattoo. That beautiful scar that you can see is my surgery scar...about half of it. And there's a matching one of those in my armpit also.
(3) The new me, with my awesome pixie haircut. When your hair initially comes in after chemo it's a combination of straw and cat hair. I'm not sure how else to describe it, but it HAD to come off almost immediately. Thank goodness for friends who are hairstylists! Next stop, maybe some color because this current one is all kinds of NOT ME. I'm thinking purple...or Katy Perry blue.
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.
