Round 3 - Naps and Emergency Rooms and Where's My Bubble.

I haven't been around much since the holidays. To be fair, I haven't been around much in real life, either. But since people are starting to ask, I thought I'd give an update (because honestly, I'm fucking tired and I don't respond to most calls or texts or messages with anything but "ok" right now). This post is not edited for grossness: feel free to stop here with the assurance that after round 4 I should be feeling more like a human AND be less dangerously immuno-compromised.

So I've been sick with some ridiculously stupid virus since December 12th. Normal people get a cold, maybe if they're like me they get a little bronchitis afterward that hangs on an extra week or two, and move on. That is not what happened with me.

The current drug cocktail of chemo is the harsh sort: it attacks fast growing cells in the body. Let's define fast growing cells: hair. Nails. White blood cells (the little army of infection and virus killers that float along with your blood). So...the super fun poisoning I'm voluntarily doing to my body is effectively killing off my immune system each round, and each round is progressively worse. What does that mean?

Normal people have a white blood cell count of about 11,000. My white blood cell count yesterday was 800. For reference, I have to have a count of 5400 or higher to have treatment. To be fair, this wouldn't be something I'd notice other than being really fucking tired if they didn't take my blood every time I go to an appointment at Oncology. They're nice vampires, at least. Ultimately, this means 1) I can't see anyone who has even been EXPOSED to any illness. All you folk with adorable little germ spreaders at home are off limits until I'm done with round 4. 2) A fever or chills sends me immediately to the emergency room, do not pass go, do not (as I discovered a couple of weeks ago when the UC nurse said OH NO, we aren't handling that here, go to the ER right now) head to urgent care. 3) I'm tired. Like, nap after I take a shower because it takes too much energy tired, all the time. 

By the weekend after chemo my body is at it's lowest point immunity-wise. By the weekend before the next treatment (that'd be this coming Saturday/Sunday, for those of you keeping count) it's back up to acceptable levels again, thanks to the Neulasta shot I get right along with chemo. Neulasta makes my bones go into PRODUCE ALL THE WHITE BLOOD CELLS RIGHT NOW overdrive, which makes my legs/hips/chest ache, but hey, bone marrow is a good thing. The weekend after chemo is the worst: I'm sick, exhausted, have no appetite, and generally just trying to get through the day. And my feet are sore, like standing on concrete for 15 hours each day sore, for ABSOLUTELY NO REASON AT ALL. It's utterly ridiculous, and terribly annoying.

On top of all of this, MY cold turned into lying in bed for three days unable to move other than to the bathroom to be sick, followed by a super fun round of bronchitis which also makes me sick, followed most recently by a nasty sinus infection which ALSO makes me sick. Feel free to read sick as vomiting until I'd rather just die, thanks. Unfortunately, it's not chemo-related and anti-nausea meds don't work. A couple of weeks ago I went to the ER because I got so violently ill I scraped up my esophagus and was throwing up blood. FUN. Interestingly, walking into the ER and saying "I'm on chemo and I'm throwing up blood" gets you a room pretty much immediately. I don't recommend. I've lost 30 pounds since December 16th when chemo started. I got a very soft-spoken reprimand from the nutritionist at Oncology today for not having enough calories and I'm told I'm not spoda lose any more weight, please, until treatment is over (1 more round of this, 12 weeks of the next drug...so May). I take more pills in the morning than Grandma right now, and thank all the gods for antibiotics that kill sinus infections.

Honestly, I've been LUCKY with all of this. I don't have many of the most common awful side effects, and if I hadn't had the death-cold that lasted all the way through I likely would've been mostly ok. But there you go: lost my hair (kept my eyebrows so far: WOOT!), spent the last month on the couch or in bed or throwing up and yell/crying FUCK YOU in the bathroom a lot, watched too much TV, hid from everyone (including my niece and nephews) because I'm now a bubble-girl germaphobe who does NOT want to end up in the hospital.

But I'm almost done: next Monday is round 4 of 4 for the AC, and then I have a three week break to get my shit together before I start the 12 weeklies. Rumor has it the Taxil is easier on the body overall than the AC I'm on now. I'm hoping I can go back to work in March when that treatment starts, because the side effects are WAY less harsh and I should be more energetic. Taxil also doesn't kill off my immunity, which means I won't be banned from public places or groups anymore...which means I'll likely be more interested in visitors.

Cancer sucks. Intentionally poisoning my body now that the cancer's gone in hopes it doesn't come back also sucks. I'm supported where I need it, and if I don't answer you directly please don't take it personally. I'm probably napping again.

Chemo is an Interesting Monster - Round 2

Yesterday I had my second round of treatment for the two drug cocktail. For people keeping score, I'm now 1/2 way through the first 4 cycles. I'll have an additional 12 of a different drug after these are done. I am tolerating it ok as long as I stay on top of my nausea-med schedule and am very careful about eating on time/sleeping when I need to. Except for this whole immune system thing.

The following may be TMI, so feel free to stop here with reassurance that as of this morning I still have hair, I'm not horking everywhere, and I'm going to beat this with somewhat less energy/determination than Maggie Smith while she Professor McGonnegal'd during breast cancer chemo, but still, I'll get there. Yes I just made McGonnegal a verb, and why shouldn't she be?

I went to Round 1 on the 16th with a cold. THE cold everyone else is getting right now, with the cough that lasts a couple of weeks and generally makes life miserable and snotty. The nurses all felt terrible for me as I coughed into a mask while they did the chemo dance. So let's discuss the actual process here.

1. weight/BP/temp collected
2. Remember that port under the skin in my chest I had surgically installed on the 9th? The one where I HORRIFIED my surgeon by casually commenting I'd get an all-over skull tattoo before my hair grows back (to which he visibly recoiled before patting my knee and saying "you do you", and my mom and I cackled like a couple happy witches in the pre-op room)? At chemo, you pick whatever heated reclining chair you prefer out of the 3 areas of chairs, grab a snack and some water, and settle in for a WHILE. Then, the nurse comes to stick an L shaped needle into the port and tape it down, which makes me instantly IV'd.
3. IV flush. I can taste and smell rubbing alcohol in the back of my throat. Gross. 
4. Port draw. Chemo nurses are very charming, kind vampires who take as many vials of blood as they want, thanks. 
5. Now we start the drugging, but not chemo yet. First, three small syringes of prescription anti-nausea meds. Those stay in my system about 48 hours, so this morning I'm currently on 5 different drugs just to combat nausea. FUN! My mouth is dry. 
6. My treatment currently consists of two different chemotherapy: the first is bright red and comes in 3 big syringes. The nurse has to administer them by hand because each syringe goes in over 10 minutes and if any gets on my skin it's a bad deal. We chat about her kids and how the holidays are going and other random things, then after the third one is in we wait a few minutes with the saline drip. 
7. Please note the saline drip or some other liquid has now been pumping fluids into my central line IV for about an hour straight. 
8. The final round of IV drugs hangs for about an hour. My bladder can NEVER make it that long, but luckily the bathrooms are huge and the IVs are on wheels, so much like the boys in Armageddon I can wheelie myself down the hall to pee. Unlike them, I get to be in real clothes and there's no anal probing first. I promise that link is SFW. If you don't know what I'm talking about, go watch Armageddon again. 
9. AFTER the chemo is done, I get my alien attachment. Instead of anything icky, it's more like  temporary insulin pump that sticks to my belly and waits 27 hours before injecting a booster that helps my bone marrow make more white blood cells. Turns out this one is pretty damned important. 

Remember the cold? So I tolerated round 1 of chemo just fine, didn't have some of the worse side effects that could happen (I knocked on all the wood, really). But I had that stupid cold. Which was fine until Saturday, then it kicked my ass in no uncertain terms. I spent Saturday night until Monday morning in bed, unable to do anything but drink water and throw up and sneeze and cough. I lost 18lbs. I went in for chest x-rays on Monday last week to check for pneumonia - nope, just bronchitis. "Just" bronchitis. So last week while Christmas was sort of happening I was drugged to the teeth with a steroid, big time cough syrup, antibiotics, and an inhaler. And orders to go directly to the ER if I get a temperature at all. Fun times. Remember how Chemotherapy is intended to kill rapidly-growing cells (this is why hair loss is a side effect - it can't distinguish which KIND of fast-growing cells)? That means white blood cells too...which make up the majority of your immune system and are made in bone marrow. One week after chemo, Oncology does labs again to check how low my immune system dropped because that gives us a baseline. Mine was frighteningly low...so I've been mostly hermiting or wearing a mask when I'm out in public because I can't get strep. I can't get the flu. I can't get whatever next cold is coming around...I don't want a repeat of that weekend before Christmas.

TODAY is the day after treatment 2, and I mostly feel good. I figure the cough will stick around a while yet but I seem to be over the rest, and the worst thing I'm dealing with today is random tiredness. Eating breakfast (so I can take pills) required a 20 minute nap afterward. Walking up the stairs to login at work took a few minutes of pause at the top. Invalid-ness sucks when you're used to doing your own thing, I'm not gonna lie. But this is temporary, and I'm 1/2 way through my first 4 cycles. Tonight my family is doing Christmas dinner and presents and stuff (we had important people out of town last week) and I'm excited I'll be able to taste fancy food...and see what chemo makes weird.

A Booby Prize

Wednesday was a day of doctors. I suppose I should be getting used to that, but so far I haven't. My surgical follow up was exactly as planned, except for getting a LOOK and a very snarky "and now you're sore, AREN'T YOU" comment from the surgeon for shoveling that morning. Yeah yeah. Lesson learned. Sadly, even though I'm healing fine and all my franken-ness is now stitch-free, the inside isn't fully healed (hence the chastisement for shoveling, because heavy lifting/labor could tear scar tissue and cause issues). Therefore, he said wait until after the new year to go back to kickboxing. This was Wednesday morning, before that last test came back and before I met my Oncologist. We'll get back to that in a minute.

Related: a friend of mine apparently objects to "Frankenboob" not because it's rude, nor because it's inaccurate (after all, Frankenstein was the doctor, not the monster), but because it does't "roll off the tongue in a poetic way". I have the best mental image of him testing, out loud, each different technical and slang term for every part of a breast to find the right combo(he assures me that's exactly what happened while stuck in traffic the other day). "Frankenboob" will now be "Frankenknocker". FK for short, which works for me on multiple levels. 

It DOES sounds more lyrical. I have no argument.

Wednesday afternoon I met my team at MN Oncology. It's ridiculous that FK has a team.

My Oncologist is also very kind and direct, a quality I appreciate since she had less than stellar news. The two tumors I had removed were sent to a lab in California for something called an Oncotype test. Essentially it's a genetic test done on the tumor itself, which is then plugged into a statistical database that's been built over however many decades of cancer research of my particular type to spit out a percentage of likelihood my cancer would come back anywhere in the body. The tumor originally found on my mammogram isn't a big deal: it's grade 1 (slow growing, not aggressive). That littler one though, that's the mean one. Grade 3 is more aggressive: my risk factor is too high.

So. I will have a port put into my chest sometime next week and get an electrocardiogram on my heart sometime in the next two weeks (did you know one of the awesome side effects for chemo can be heart damage? I didn't either.) and on the 16th I'll start five months of chemo (assuming, of course, that everything goes according to plan, which honestly hasn't happened since I went in for a routine mammogram). Radiation will start after chemo. There isn't currently any detectable cancer in my body, just to be clear: the intent of this round of treatment is to kill anything that's too small to detect so it doesn't come back anywhere else (that's what metastatic means - breast cancer with a wandering streak).

There's a door prize for getting told you're starting chemo in a couple of weeks. A nurse's assistant came in to give me a large 3 ring binder full of information, a nice clear list of which drugs are administered when, the side effects, and when I should call the office if side effects are bad. Along with the binder she awkwardly handed me a thermometer, like she KNEW it's ridiculous. But since three different kinds of fun poison will be dribbled in the port (each session will be a couple hours) and the drugs will kill off good cells and bad ones, my immune system will be sad and slow. Monitoring for fever will be a thing, and apparently adults don't usually have a thermometer at home, so they give everyone one when treatment starts.

Aren't I just a barrel of fun these days? Yeah, I think so too.

Kickboxing is off until next fall at the earliest (I've sadly already texted the head instructor in Burnsville to ask if we can put my membership on hold or if I should just start over, because it's too expensive to just let it sit and bill every month for that long). Honestly I'm pretty pissed about that.

I won't be able to shovel my own driveway this winter after all (looking into snow removal services now). I'm pissed about that too, for the expense and the inconvenience. However, I may not be so pissed about it when I don't have to bundle up and slide down my driveway. We'll see.

The rest I don't know about yet. Not everyone has the same side effects, but I plan for the worst and hope for better. Christmas/Yule stuff will depend entirely on how I react to treatment, which is every other week starting the 16th for two months, then weekly for three more months.

The big question here is will I rock the Telly Savalas look, or will I wig out...I don't know that yet either.

I suppose I could cancel the appointment I have for a haircut in December, though.