My new normal
Okay, I promised another post, so here it is.
I'm so blah. I'm not sure if it's still leftover fatigue from the chemo or just that I've gotten into a habit of being tired/lazy. Maybe both?
I'm also VERY distractable. The brain fog has worn off for the most part, but I lose focus really easily. It's frustrating and it takes me a lot longer to complete tasks. It's almost like drug-induced ADD. I might be able to relate better to Mark after all of this! (I don't WANT ADD!!)
And here's something weird-- whenever I sneeze, my innards shudder! They're not firmly attached anymore, so everything shifts around. It's pretty distressing, to be honest. I don't feel like my body is my own. Oh, and on that note-- the PORT! I am a cyborg now, says Mark. I don't think my port really qualifies me since it's not mechanical. I should ask Marissa-- she's pretty much an expert on cyborgs now!
Anyway, I have a small (ha! Feels huge!) titanium port implanted in my chest. It's basically like a little bowl with a thick silicon lid and a hose running from it to my heart. They poke a needle through the silicon (and my skin!) into the open part of the bowl. Then whatever liquid they force in (works like like an IV) runs through the hose (catheter) which is tunneled under the skin to my neck where it is threaded into my jugular vein and ends just shy of my heart. Chemo will eat away at your veins if they use a regular IV. A few hours worth of infusion can blow a vein-- which is UGLY (think varicose veins on legs) and makes the vein unusable in the future. Therefore, the port is really necessary. Horrible, but necessary. Anyway, it dumps it in the "waterfall" entrance to the heart where it is mixed with large blood volumes and quickly dispersed through the body.
The worst thing about the port is that they create a pocket in the muscle and implant it in your upper chest.
(Oh, it totally looks like this is an open wound, but they used the skin glue on it. It's basically super glue. It'll fall off around day 10 (2 more days!!). It's supposed to heal prettier than staples or stitches. Good-- that's my chest!)
Once it heals, it's invisible. For most people. I have no fat. It sticks WAY out! You can even see it through my clothes!
And can I feel it? You betcha! I mean, it's implanted in the muscle-- every upper body movement on the right side of my body drags it across the rib it's stitched over (it needs something solid behind it to brace against the pressure needed to get the needle through the silicon!) Here, read about this miserable thing for yourself (and see a pic-- mine is the top of the three listed toward the bottom of the page) http://www.angiodynamics.com/products/smart-port-ct Sorry, can't remember how to do fancy links and I'm too lazy to look (I'd get distracted and come back an hour from now!).
Anywho, the port sucks, but the catheter is even worse! It snakes up and over my collar bone. That's a sensitive spot. Put your finger right under your collar bone, give it a little pressure, then push it up and over. Then down, then up. Do this a few times. Now imagine a 1/4" tube under the skin that does this EVERY TIME YOU MOVE YOUR HEAD! Yeah, just try to left shoulder check while driving. Sometimes I get nausea just from the feeling of this thing under my skin.
My body is not my own!
Even things that should no longer affect me still are. The prednisone I stopped taking a full month ago for example. I knew about the mustache it grew for me-- I've been plucking that. And my leg and underarm hair has been growing thicker and faster than usual, but whatever, I can shave it. But the other day I was shaving my underarms and the sun was shining through the bathroom window (gotta use an electric razor to minimize risk of nicks!) and I noticed that my BOOBS WERE HAIRY! I should also state for the record, I am NOT normally a hairy person at all. I could go a month without shaving my legs and you would have to be uncomfortably close to me to notice. Yeah. My body is CLEARLY not my own. It belongs to some hairy man with acne and metal stuff implanted in his hairy, boobless chest! (Cause I'm so underweight!) Oh, and that's not even mentioning the whole fact that there's a plastic bag taped to my tummy to collect poo. Yup. I guess I'm getting used to that one so I forget it's even there. Until it's full. Then it's just annoying.
Okay, so that's the port and the non-chemo stuff. Let's move on to the actual drugs. So, most people have their port put into a week or so before chemo starts, but because of my allergy testing, we couldn't prove that it was (most likely) safe until 2 days before my chemo was supposed to start. So it went in the same day. Yeah. Like, I had time to eat a snack when I woke up from surgery (well, from the end of surgery-- I woke up once in the middle-- that was a little freaky. Especially since the local anesthetic was a little lacking at the upper incision and I felt them stitching me. I yelped, then passed out-- they gave me more sleepy drugs!)
Sorry for the rambling-- I just can't keep my brain running straight, and I'm too lazy to edit this down to making sense, so stream of consciousness is what you get!
So, I woke up, had a snack, met with my oncologist (cancer doctor for those not in the know), where I was told that I had spots on my liver and ovary that are *probably* not cancer, but I'm having MRIs next week to be sure. They're checking my brain too because Lynch can cause brain tumors and my head has been not right for months. Probably just stress (cause who wouldn't have stress-induced brain issues?), but because of the increased risk, they're checking to put me at ease. Anyway, he tells me not to worry about those spots (yeah right!) and sends me off to infusion.
They put the needle into the port while I was out (I'm glad of that-- they missed-- there are two needle-pricks!), so I don't know what that experience is like. Some say it hurts a lot, others say it's no big deal compared to an IV. They gave me a tube of lidocaine cream to put on an hour before needle insertion, so I guess that means it's at least a little painful, but maybe well-controlled with the cream? I think I'll apply it twice next week-- once at an hour and once at 20 minutes-- just to be sure it hasn't worn off! I am a wimp. Of course, I hardly bat an eye at getting an IV these days-- no anxiety until a few seconds before the poke-- so I think I'll get used to it quick enough.
Normally the needle will be put in when I first arrive. They will use it to draw blood for my labs (they have to make sure the previous chemo hasn't knocked down your blood levels too much. If you're not "healthy" enough, they can't knock you down further and your infusion is cancelled that week). Then you wait an hour or so for the labs, see the doctor so he can make sure the rest of you is really healthy enough to handle the chemo. THEN it's off to infusion.
So, the needle is in and 4" or so of tubing is taped to my chest, waiting to be hooked up. First, I got steroids (Decadron), which I will NOT be getting again. It's supposed to help with the nausea and fatigue, but for me, it causes horrible heartburn (the prednisone did too, but not nearly this bad!). 2 days after my infusion, the heartburn was SO BAD that even with all sorts of drugs (prescription and Tums), I had to stay bolt upright. If I reclined even a little, it caused such bad chest pain (doesn't really burn-- not sure why they call it heartburn), and within a few minutes, the nausea would roll in. I threw up a few times and I place full blame on the Decadron!
Second infusion was the Aloxi. This is the "super drug". It's a new IV antinausea drug that's only a few years old and has, apparently, changed the way chemo happens now. Most people have their nausea so well controlled that they don't puke at all, or maybe only a few times at home once it wears off and before other drugs kick in. I like Aloxi-- I'll keep this drug :) I had NO nausea at all during infusion or the next day. (When I say "infusion", I mean the first of my two chemo drugs-- I'll refer to the other one as the "pump")
Then I got a little packet of calcium and magnesium. This is to prevent the nerve damage of the first chemo drug. It's the only one that I "felt" side effects from during infusion. Magnesium by IV makes you hot. I'm lucky-- I just felt like someone turned up the heat. I had to take off my sweater. Some people feel like they're sitting in the sun with a horrible sun burn. Some people can't handle it at all. They have to slow down the drip and take a few hours to get the infusion (mine was about 20 minutes at the normal drip speed).
Finally, after being hooked up to the IV pump for like 2 hours, they started the "chemo" (I got a 10 minute saline flush between each drug so that they don't mix). Oxaliplatin is the first toxin they pumped into me. (Please don't tell me to think of it like a sweet healing nectar from heaven-- it's poison and I know it. I just hope the cancer cells all die and enough of mine stick around to keep me from having permanent side effects!). Some people start to feel the first side effects within a few minutes of starting the infusion. The most common side effect (like 90% + of people who get this drug experience it) is cold sensitivity. You can't touch, swallow, or breath anything cold. If you touch it, (especially fingers and toes), it will feel like little daggers are stabbing you. Thousands of them. So cold that they're hot. It HURTS and when you forget and touch something, sometimes it will make you YELL with both surprise and pain. And cold means anything below room temp! I have to wear mittens to reach into the fridge or freezer. It makes it difficult to cook even, cause there are foods that you have to touch that are cold-- and wearing mittens just doesn't work. Then there is the swallowing. Room temp or warmer. All food and drink. The cold sensitivity didn't kick in until about 6 hours after the Oxali was infused, so I kinda thought I'd get away without it (ha!) and had some cool (slightly below room temp-- warmer than fridge!) water. One sip and my throat felt like it was shut completely. Feels like an anaphylactic reaction for any who have experienced that. They *say* it only feels like it and your throat isn't really shutting (it's a nerve issue), but I lost my voice for about half an hour. It paralyzed my vocal cords and I couldn't speak. SCARY. I will be SOOO careful with this side effect from now on! I haven't noticed the breathing cold air thing to be too bad. I've been outside with the kids a few times this week. I did stay inside the first few days though, and used a scarf across my mouth the few times I had to go house-to car-to cancer clinic. A few times I felt a little tightening, but I have cold-induced asthma and it felt exactly like that (a mild version of that) and it was cold enough to trigger that, so I'm not sure which one it was. I'm used to dealing with that (or I was when I lived here previously), so it didn't bother me much. Maybe other people would freak out more? I did the first few times I had the asthma issue in college!
So, my cold sensitivity in throat started about 6 hours in and in my hands, it was the next morning. I was told it would start to wear off within about 2-5 days. No. Throat wore off first. At about 6 days, I could drink cold stuff again. Right now I'm working on a popsicle. The cold sensitivity started to *decrease* around day 5. I could put my hand in the fridge briefly to grab something, but couldn't hold it for more than a few seconds. Still needed the mittens if it was heavy and needed a good grip or was towards the back and required moving things around. Today was day 8 and I STILL had pain when touching things in the freezer and when going outside to play with the kids in the snow. (meaning, I stood there for 10 mins taking pictures with my mittens on and never touched the snow!). They say that it will last longer with each infusion. By the end of the 6 months it won't go away between treatments at all. It does eventually go away for most people, but it can take up to 5 years (that's the timeframe for ALL side effects!! Sucky! 6 months to 5 years!)
Of course, the cold sensitivity is part of a bigger issue. It's the surface symptom of something much much worse. Peripheral neuropathy: nerve damage in hands and feet, mostly toes and fingers. This is nerve pain that comes on without cold, tingling, and numbness in fingers and toes. It can range from mild to severe. It's Oxali's worst side effect and it TERRIFIES me. I NEED my fingers. If I can't feel, I could seriously injure myself while sewing or making jewelry. Assuming I can even manage a needle or pliers and itty bitty beads with numb fingers. Some people lose feeling in their toes to the point where they trip over things. Lots of broken bones are attributed to neuropathy. And it doesn't help that steroids can cause osteoporosis, so our bones are fragile to start with!
Oxali also causes nausea and vomiting (yay aloxi!) and some other digestive issues.
After the Oxali, I got another infusion of calcium and magnesium. The neuropathy is such an issue that they give this before AND after it to do as much damage control as possible. I'm also supposed to be taking B6 and B12 because they're good for the nervous system. Finally bought them yesterday. Should probably take them! The second infusion made me REALLY hot. I had to walk around in the hall (dragging that stupid IV pole) because the little bit of moving air from walking cooled my skin a little. It faded soon after the drip was done though. I could always ask them to slow it down next time since I'll be stuck until Mark gets off work, but it was already after 8pm at that point and I just wanted to get on with it!
Then after a final saline flush, I got hooked up to my 5FU pump. It has a longer name, but I never took the time to learn it-- everyone just calls it 5FU. I was supposed to get Leucovorin too (a super form of folic acid), but there is a drug shortage and it's not available. This scares me a little because there is only one study that shows that this particular combo of drugs is effective for people with Lynch syndrome and it included the leucovorin. 5FU on it's own is BAD for people with lynch, but the 3 drug combo had good results. They don't know if the other two drugs still work without it. Is it really just the oxali making the 5FU safe for me or do I really need the leucovorin? I HATE that there isn't good info for lynch treatment yet. Then again, I should be grateful-- lynch is one of the very few genetic cancers, or genetic issues AT ALL that has been coded in the human genome. I should be grateful for that I guess. There are SO MANY genetic diseases that they haven't figured out yet and are probably being treated all wrong, but they just don't know. We have a little to go on and that's A LOT! (wow, I'm actually tearing up. I haven't cried in a few weeks!)
Okay, so, the 5FU pump. It's like a smallish crossbody purse.
I didn't take a pic of the thing so I totally snagged this pic of the exact same pump and bag from this guy's rectal cancer blog http://johnscancerblog.blogspot.com/2010_12_01_archive.html Anyway they hook it up to the port tubing (every drug change means switching the 4" long dangling tubing to a different set of tubing attached to the bag of meds. Can we say WASTE? Oh, and talking about waste, each cycle requires 4 complete disposible outfits for the nurse. They have to wear these protective plastic apron/smock things. They're high necked and long sleeved. Plus crazy thick gloves. And maybe masks? I can't quite remember, but I think there was a mask. Wait, yes, a mask that covered the mouth and nose AND included a splash mask over the eyes. Or... was that the surgical nurse? It's a little foggy in my mind. maybe the chemo nurses were just mouth/nose... anyway, they could wear normal gloves and scrubs with no mask when changing out all the other meds, but before they could open the outer bag of the Oxali or 5FU, they had to suit up. So, once before and once after Oxali, then once before 5FU. Then when I go for my disconnect on the 5FU 2 days later, they suit up again! WASTE, I tell you. I need to do it too though. Whenever I empty my ostomy bag, while I'm on chemo and for 24 hours after (that's a total of almost 4 days every 2 weeks!!). You don't have to wear gloves if you use the potty like a normal human, but having an illeostomy makes things a little (or a LOT) more liquidey and the process of cleaning up the pour spout on the bag makes it more likely that you'll get some on you. It doesn't *usually* happen, but that risk is higher than with normal wiping. But think about this-- it's so toxic that they're afraid it will harm you on it's way OUT of the body, yet they're pumping this stuff directly into your heart!!
So now I'm connected to the 5FU pump and sent on my way. 46 hours of one drop of poison every 5 minutes. 1/2 ml per hour. It makes a little whirring sound every time. It's a little annoying, but you get used to it. The bigger problem is that you're tethered to the stupid bag. It goes EVERYWHERE with you! It just barely zipped into my coat (since I kept pulling my sweater on and off, I put it on just above my tank top). The strap irritated my port. You have to wear it cross-body so you don't drop it. I can't wear it on the right shoulder cause it would be directly across my port, but on the left, it still rubbed the bottom of the port. I suppose if I had boobs, they would hold the strap down, but... well, I have nearly nothing there-- I can't say none, since I've made a new friend who has breast cancer. I have some, just not much! It gets in the way when I go to the bathroom, so I have to put it on the hook behind the door. It gets in the way when I sleep, so its on the nightstand. It would get in the way in the shower, but I'm not allowed to shower at all when it's hooked up. Grr. But whatever. It's not the end of the world. Just a small annoyance. An annoyance I need to wear from Wednesday to Friday every other week.
I did manage to act pretty normal with it on. I even played Wii Fit (Yes, I got home after 9 pm, but I had been on Benedryl and other sedatives and dozed away the first half of the day, and then was given a massive dose of steroids at 5pm. I was WIRED! Surgery or not, I was NOT going to sleep. I was told exercise was one of the best ways to keep away chemo side effects, so onto the balance board I went. I couldn't do any strength or yoga activities since I had an incision in my chest and all, but I did balance activities and a few mild aerobic ones.
I totally reached too far just as Mark snapped this pic. Stupid sore chest! But it shows off the tubing from the dressing in my chest-- this is the only view I had of the thing for the first 2 days. All taped up with the needle in it.
When I was doing the advanced seguey game, it goes up and down hills, and the way the view changes as you climb is a little dizzying. Well, I totally fell off the balance board! I didn't fall on my butt or anything-- I caught myself, but I was a few feet behind the board! I guess even though the steroids were masking it's effects, the benedryl was still at work in my system (It'll knock me right out in IV form!)
I went to bed pretty late the first night because of the steroids. Therefore, I slept late. The next day I actually felt pretty normal. SORE from the surgery, but I only took one oxycodone all day. Not bad. Other than the cold sensitivity, I had no side effects. I was supposed to take a steroid by mouth, but found that they had forgotten to give me a prescription for it and it wasn't in my bag of meds (I have 11 different prescription drugs to deal with chemo side effects!). By the time the nurse got it called in, it was too late to take it that day-- it would have kept me up all night. Well, I was up all night anyway. I just couldn't sleep! I finally passed out around 4. I was alone in the bed because Mark had a cold, so I sent him to the couch (It's not as mean as it sounds-- I have no ability to fight off infections and this is how I am *supposed* to deal with him being sick. Too bad it was too late and I got it anyway). So, I fell asleep around 4 am. But Mark's alarm from the day before went off at 5:30 am (he goes to a men's coffee group on Thursday mornings). And as soon as I woke up and turned it off, the heartburn hit. Count with me, I had 1.5 hours of sleep at this point. From then on, I had to stay vertical! Heartburn progressed. I drugged it. It brought on horrible nausea. I puked. Took a second nausea drug. Then Ativan (anti-anxiety sleepy-making, nausea-controlling drug). I propped myself up with every pillow I could find and passed out sitting up. 2 hours later, I woke up after sliding down a little. Heartburn was BACK. And this time, no drugs were touching it. I puked AGAIN. I took all of my anti-nausea drugs (I have 3 I was allowed to take at this point). Nausea was moderately controlled, but the heartburn was RAGING! If I reclined even a little, it brought waves of nausea on top of the chest pain. EVEN with all those nausea drugs! I called the nurse to ask if I had to take the steroid. I didn't get my usual nurse, and her sub acted like steroids don't cause heartburn. I told her yes they do-- that's why I have prescription meds from the last steroids I was on. So she told me to take them-- Uh, I already did!. Finally, she said I didn't need to take the steroid (supposed to prevent nausea-- um, no, it's CAUSING it! If I thought Prednisone was evil, Decadron is from the devil! My mom agreed that it's POWERFUL nasty!). Finally, they told me to come in early for my disconnect (ended up being right on time between their busyness and several accidents on the freeway) and they gave me fluids (between the puking and not being able to eat/drink around the heartburn, I was a little dehydrated) and Zantac and Aloxi for the heartburn and nausea. After the drugs, I could recline and relax while I waited for the fluids to finish (they take 2 hours! HUGE bag). I had mild heartburn and nausea the next day, but they were controllable with oral drugs. The chemo nurse said I could probably get the Decadron (steroids) removed from my meds from here on out. There's no point since it was causing the side effect it was supposed to prevent.
I went home and felt SO TIRED. Yes I had only gotten 3.5 hours of sleep, but this was worse than just tired. This was the chemo fatigue-- blood counts were dropping. Yay for drugs that kill your blood cells! I went to bed and slept and slept and slept. I woke up to snow, helped Mark dress the kids to go out in it (our first time messing with winter gear in over 2 years!!) then collapsed on the couch. I just sat there for 20 minutes-- so tired. Of course, after 3 days without showering, I HAD to change my bag. And it has to be done on an empty stomach, first thing in the morning (if you're wondering why, putting food into the top end of your digestive system will start it moving. You don't want that while changing things out. In fact, I have to force down 5 large marshmallows on an empty stomach because something in them temporarily shuts down the intestines. No one knows why. But I can tell you that after eating that many of them on an empty stomach-- especially one that is queasy from chemo-- I have no desire to eat them as a treat ever again!). So I showered and changed out the bag, dried my hair, dressed, at breakfast, and then donned all of my winter gear. This was a little scary. I didn't know how I would do with the cold sensitivity. But the kids were at the park sledding and this could be the only snow we got all year (Seattle just doesn't get much-- Usually). I made it the two blocks to the park (luckily the air was okay to breath!) and joined the kids on the hill. I went down twice-- once with each kid, and took pics of Mark sledding too.
Then I went home. 10 minutes was enough. Took Stasi with me too. Her mitts got wet and fell off early on, poor girl! Mark kept Kaed for another 20 minutes or so. I didn't really notice the cold sensitivity until I was helping him take off his boots and got some snow on my bare hand. OWW! I yelled that time. It was the first time I REALLY felt it.
As soon as I came in from sledding, the fatigue hit hard. I peeled off my outer wear and went straight to bed and slept away the day. I hardly had trouble falling asleep that night either-- only took about an hour of lying there (sleep? At night? Not anymore!). I really wanted to go to church, but when I woke up in the morning, I didn't really *wake up*. I bumbled around and helped dress the kids. Once they were in the car, I crawled back into bed. I wasn't sleepy, but I couldn't move, so I goofed around online. I fell asleep right around the time Mark and the kids got home from church. I didn't really see the kids at all that day! I woke up in time to help put them to bed. Then, while I was on the phone with my brother that night, I finally *woke up*. 9 pm and suddenly I could think straight and I didn't want to be horizontal. (I was on the phone with my mom a little earlier and she kept telling me to go down and play with the kids. She would ask if I was sitting up-- I kept getting dizzy when I tried to stand up, but I couldn't sit up long enough for the dizziness to go away-- I kept accidentally lying down again. SOOOO fatigued and then suddenly it lifted.
But what happens when you've slept for 2 days then wake up? You stay up all night. I finally was able to sleep around 5 am. Then slept till noon. Monday I felt tired, but could function. Played with the kids in the afternoon. Tried to sleep that night, but couldn't. I took and Ativan around 2 am and finally fell asleep at 3. Slept till noon.
That was yesterday. There was a huge storm forcast for today. Huge meaning 6-10" of snow. Doesn't sound like much, but in a city that has almost no flat roads, and some that rival San Francisco (usually shorter stretches, but equally steep!), and also has NO plows! (actually, I think there may be 2 or 3), but not enough to DO anything! Snow means the whole city shuts down. Schools have been closed all week-- well, no buses or preschool on Tuesday-- regular classes still ran. Anyway, with this "storm" on the way, I knew I had to run some errands. I thought I could wait until the worst of the snow melted, but there was more coming-- clearly I needed to go sometime, and I knew it wouldn't be safe today. I plotted a route that involved the flatest streets to get to the closest stores that would do and set out (no kids-- Mark's parents were with them yesterday. I wouldn't have risked my first time driving in snow in 8 years with my kids in the car!) I only had trouble stopping once-- was going a little fast and and there was a pretty deep slushy spot right in front of the stop sign. Other than that I did okay. Got what I needed (including a snow shovel-- I thought there was one mixed in with all the yard care stuff the landlord left in the garage, but nope), did a little extra shopping and mall wandering. I hadn't been out other than chemo for over a week. It was nice to feel "normal" for a few hours. I even found fluffy warm socks and a earflap hat with little bear-like ears on it on clearance! I love clearance! I didn't have a good close-fitting hat, so I was glad to find such a cute one. We went to Bible study last night too. My most normal day since chemo started! Until my nose started dripping. A cold. Arg! Or maybe just allergies? Our friends got new cats and I'm pretty allergic. Either way, my nose was POURING and I couldn't sleep until 5.
Today I woke up to snow everywhere. It all fell in the morning while I was sleeping-- I woke up around 1! (well, it continued to dust snow all day-- you had to really look hard to see it falling though). Mark was working from home again. The experience on the bus yesterday wasn't pleasant and they aren't even running in our neighbourhood. I wasn't packing up the kids to drive him 10 blocks to the transit station. Especially since I was still asleep! Around 2 I asked him to take a "lunch break" to take the kids out in the snow since I knew I couldn't handle it with my cold. It turned into a 2 hour break and he shoveled half the driveway (It wrecks our transmission so park on the road-- so it was mostly just a walkway). He had to keep working pretty late into the evening, but it was worth it. I even joined them for about 10 minutes and took pics until my fingers started to kill me. Stupid cold sensitivity-- I was wearing mittens and the temp was above freezing!
I came in and made chicken soup (not as good from boxed broth as from homemade stock, but whatever) and listened to a live webinar on depression in cancer patients. Not any new info, but the chat with my online support group afterwards was good (that's how I've come to think of the people who frequent the chat room on the Colon Cancer Alliance site. Then baby bedtime.
And that's pretty much been my week. I've done a little writing the last three days since my brain "woke up" again. Yup, that's really all I did all week. Oh, 2 nights ago Mark and I did Wii Fit and then played a round of races on Mario Kart. That was fun. Yes, that's an *event* in my life right now. That is sad. But that is chemo. Welcome to the new normal. (wow, I've been working on this post for over 3 hours!!!)
I'm so blah. I'm not sure if it's still leftover fatigue from the chemo or just that I've gotten into a habit of being tired/lazy. Maybe both?
I'm also VERY distractable. The brain fog has worn off for the most part, but I lose focus really easily. It's frustrating and it takes me a lot longer to complete tasks. It's almost like drug-induced ADD. I might be able to relate better to Mark after all of this! (I don't WANT ADD!!)
And here's something weird-- whenever I sneeze, my innards shudder! They're not firmly attached anymore, so everything shifts around. It's pretty distressing, to be honest. I don't feel like my body is my own. Oh, and on that note-- the PORT! I am a cyborg now, says Mark. I don't think my port really qualifies me since it's not mechanical. I should ask Marissa-- she's pretty much an expert on cyborgs now!
Anyway, I have a small (ha! Feels huge!) titanium port implanted in my chest. It's basically like a little bowl with a thick silicon lid and a hose running from it to my heart. They poke a needle through the silicon (and my skin!) into the open part of the bowl. Then whatever liquid they force in (works like like an IV) runs through the hose (catheter) which is tunneled under the skin to my neck where it is threaded into my jugular vein and ends just shy of my heart. Chemo will eat away at your veins if they use a regular IV. A few hours worth of infusion can blow a vein-- which is UGLY (think varicose veins on legs) and makes the vein unusable in the future. Therefore, the port is really necessary. Horrible, but necessary. Anyway, it dumps it in the "waterfall" entrance to the heart where it is mixed with large blood volumes and quickly dispersed through the body.
The worst thing about the port is that they create a pocket in the muscle and implant it in your upper chest.
(Oh, it totally looks like this is an open wound, but they used the skin glue on it. It's basically super glue. It'll fall off around day 10 (2 more days!!). It's supposed to heal prettier than staples or stitches. Good-- that's my chest!)
Once it heals, it's invisible. For most people. I have no fat. It sticks WAY out! You can even see it through my clothes!
And can I feel it? You betcha! I mean, it's implanted in the muscle-- every upper body movement on the right side of my body drags it across the rib it's stitched over (it needs something solid behind it to brace against the pressure needed to get the needle through the silicon!) Here, read about this miserable thing for yourself (and see a pic-- mine is the top of the three listed toward the bottom of the page) http://www.angiodynamics.com/products/smart-port-ct Sorry, can't remember how to do fancy links and I'm too lazy to look (I'd get distracted and come back an hour from now!).
Anywho, the port sucks, but the catheter is even worse! It snakes up and over my collar bone. That's a sensitive spot. Put your finger right under your collar bone, give it a little pressure, then push it up and over. Then down, then up. Do this a few times. Now imagine a 1/4" tube under the skin that does this EVERY TIME YOU MOVE YOUR HEAD! Yeah, just try to left shoulder check while driving. Sometimes I get nausea just from the feeling of this thing under my skin.
My body is not my own!
Even things that should no longer affect me still are. The prednisone I stopped taking a full month ago for example. I knew about the mustache it grew for me-- I've been plucking that. And my leg and underarm hair has been growing thicker and faster than usual, but whatever, I can shave it. But the other day I was shaving my underarms and the sun was shining through the bathroom window (gotta use an electric razor to minimize risk of nicks!) and I noticed that my BOOBS WERE HAIRY! I should also state for the record, I am NOT normally a hairy person at all. I could go a month without shaving my legs and you would have to be uncomfortably close to me to notice. Yeah. My body is CLEARLY not my own. It belongs to some hairy man with acne and metal stuff implanted in his hairy, boobless chest! (Cause I'm so underweight!) Oh, and that's not even mentioning the whole fact that there's a plastic bag taped to my tummy to collect poo. Yup. I guess I'm getting used to that one so I forget it's even there. Until it's full. Then it's just annoying.
Okay, so that's the port and the non-chemo stuff. Let's move on to the actual drugs. So, most people have their port put into a week or so before chemo starts, but because of my allergy testing, we couldn't prove that it was (most likely) safe until 2 days before my chemo was supposed to start. So it went in the same day. Yeah. Like, I had time to eat a snack when I woke up from surgery (well, from the end of surgery-- I woke up once in the middle-- that was a little freaky. Especially since the local anesthetic was a little lacking at the upper incision and I felt them stitching me. I yelped, then passed out-- they gave me more sleepy drugs!)
Sorry for the rambling-- I just can't keep my brain running straight, and I'm too lazy to edit this down to making sense, so stream of consciousness is what you get!
So, I woke up, had a snack, met with my oncologist (cancer doctor for those not in the know), where I was told that I had spots on my liver and ovary that are *probably* not cancer, but I'm having MRIs next week to be sure. They're checking my brain too because Lynch can cause brain tumors and my head has been not right for months. Probably just stress (cause who wouldn't have stress-induced brain issues?), but because of the increased risk, they're checking to put me at ease. Anyway, he tells me not to worry about those spots (yeah right!) and sends me off to infusion.
They put the needle into the port while I was out (I'm glad of that-- they missed-- there are two needle-pricks!), so I don't know what that experience is like. Some say it hurts a lot, others say it's no big deal compared to an IV. They gave me a tube of lidocaine cream to put on an hour before needle insertion, so I guess that means it's at least a little painful, but maybe well-controlled with the cream? I think I'll apply it twice next week-- once at an hour and once at 20 minutes-- just to be sure it hasn't worn off! I am a wimp. Of course, I hardly bat an eye at getting an IV these days-- no anxiety until a few seconds before the poke-- so I think I'll get used to it quick enough.
Normally the needle will be put in when I first arrive. They will use it to draw blood for my labs (they have to make sure the previous chemo hasn't knocked down your blood levels too much. If you're not "healthy" enough, they can't knock you down further and your infusion is cancelled that week). Then you wait an hour or so for the labs, see the doctor so he can make sure the rest of you is really healthy enough to handle the chemo. THEN it's off to infusion.
So, the needle is in and 4" or so of tubing is taped to my chest, waiting to be hooked up. First, I got steroids (Decadron), which I will NOT be getting again. It's supposed to help with the nausea and fatigue, but for me, it causes horrible heartburn (the prednisone did too, but not nearly this bad!). 2 days after my infusion, the heartburn was SO BAD that even with all sorts of drugs (prescription and Tums), I had to stay bolt upright. If I reclined even a little, it caused such bad chest pain (doesn't really burn-- not sure why they call it heartburn), and within a few minutes, the nausea would roll in. I threw up a few times and I place full blame on the Decadron!
Second infusion was the Aloxi. This is the "super drug". It's a new IV antinausea drug that's only a few years old and has, apparently, changed the way chemo happens now. Most people have their nausea so well controlled that they don't puke at all, or maybe only a few times at home once it wears off and before other drugs kick in. I like Aloxi-- I'll keep this drug :) I had NO nausea at all during infusion or the next day. (When I say "infusion", I mean the first of my two chemo drugs-- I'll refer to the other one as the "pump")
Then I got a little packet of calcium and magnesium. This is to prevent the nerve damage of the first chemo drug. It's the only one that I "felt" side effects from during infusion. Magnesium by IV makes you hot. I'm lucky-- I just felt like someone turned up the heat. I had to take off my sweater. Some people feel like they're sitting in the sun with a horrible sun burn. Some people can't handle it at all. They have to slow down the drip and take a few hours to get the infusion (mine was about 20 minutes at the normal drip speed).
Finally, after being hooked up to the IV pump for like 2 hours, they started the "chemo" (I got a 10 minute saline flush between each drug so that they don't mix). Oxaliplatin is the first toxin they pumped into me. (Please don't tell me to think of it like a sweet healing nectar from heaven-- it's poison and I know it. I just hope the cancer cells all die and enough of mine stick around to keep me from having permanent side effects!). Some people start to feel the first side effects within a few minutes of starting the infusion. The most common side effect (like 90% + of people who get this drug experience it) is cold sensitivity. You can't touch, swallow, or breath anything cold. If you touch it, (especially fingers and toes), it will feel like little daggers are stabbing you. Thousands of them. So cold that they're hot. It HURTS and when you forget and touch something, sometimes it will make you YELL with both surprise and pain. And cold means anything below room temp! I have to wear mittens to reach into the fridge or freezer. It makes it difficult to cook even, cause there are foods that you have to touch that are cold-- and wearing mittens just doesn't work. Then there is the swallowing. Room temp or warmer. All food and drink. The cold sensitivity didn't kick in until about 6 hours after the Oxali was infused, so I kinda thought I'd get away without it (ha!) and had some cool (slightly below room temp-- warmer than fridge!) water. One sip and my throat felt like it was shut completely. Feels like an anaphylactic reaction for any who have experienced that. They *say* it only feels like it and your throat isn't really shutting (it's a nerve issue), but I lost my voice for about half an hour. It paralyzed my vocal cords and I couldn't speak. SCARY. I will be SOOO careful with this side effect from now on! I haven't noticed the breathing cold air thing to be too bad. I've been outside with the kids a few times this week. I did stay inside the first few days though, and used a scarf across my mouth the few times I had to go house-to car-to cancer clinic. A few times I felt a little tightening, but I have cold-induced asthma and it felt exactly like that (a mild version of that) and it was cold enough to trigger that, so I'm not sure which one it was. I'm used to dealing with that (or I was when I lived here previously), so it didn't bother me much. Maybe other people would freak out more? I did the first few times I had the asthma issue in college!
So, my cold sensitivity in throat started about 6 hours in and in my hands, it was the next morning. I was told it would start to wear off within about 2-5 days. No. Throat wore off first. At about 6 days, I could drink cold stuff again. Right now I'm working on a popsicle. The cold sensitivity started to *decrease* around day 5. I could put my hand in the fridge briefly to grab something, but couldn't hold it for more than a few seconds. Still needed the mittens if it was heavy and needed a good grip or was towards the back and required moving things around. Today was day 8 and I STILL had pain when touching things in the freezer and when going outside to play with the kids in the snow. (meaning, I stood there for 10 mins taking pictures with my mittens on and never touched the snow!). They say that it will last longer with each infusion. By the end of the 6 months it won't go away between treatments at all. It does eventually go away for most people, but it can take up to 5 years (that's the timeframe for ALL side effects!! Sucky! 6 months to 5 years!)
Of course, the cold sensitivity is part of a bigger issue. It's the surface symptom of something much much worse. Peripheral neuropathy: nerve damage in hands and feet, mostly toes and fingers. This is nerve pain that comes on without cold, tingling, and numbness in fingers and toes. It can range from mild to severe. It's Oxali's worst side effect and it TERRIFIES me. I NEED my fingers. If I can't feel, I could seriously injure myself while sewing or making jewelry. Assuming I can even manage a needle or pliers and itty bitty beads with numb fingers. Some people lose feeling in their toes to the point where they trip over things. Lots of broken bones are attributed to neuropathy. And it doesn't help that steroids can cause osteoporosis, so our bones are fragile to start with!
Oxali also causes nausea and vomiting (yay aloxi!) and some other digestive issues.
After the Oxali, I got another infusion of calcium and magnesium. The neuropathy is such an issue that they give this before AND after it to do as much damage control as possible. I'm also supposed to be taking B6 and B12 because they're good for the nervous system. Finally bought them yesterday. Should probably take them! The second infusion made me REALLY hot. I had to walk around in the hall (dragging that stupid IV pole) because the little bit of moving air from walking cooled my skin a little. It faded soon after the drip was done though. I could always ask them to slow it down next time since I'll be stuck until Mark gets off work, but it was already after 8pm at that point and I just wanted to get on with it!
Then after a final saline flush, I got hooked up to my 5FU pump. It has a longer name, but I never took the time to learn it-- everyone just calls it 5FU. I was supposed to get Leucovorin too (a super form of folic acid), but there is a drug shortage and it's not available. This scares me a little because there is only one study that shows that this particular combo of drugs is effective for people with Lynch syndrome and it included the leucovorin. 5FU on it's own is BAD for people with lynch, but the 3 drug combo had good results. They don't know if the other two drugs still work without it. Is it really just the oxali making the 5FU safe for me or do I really need the leucovorin? I HATE that there isn't good info for lynch treatment yet. Then again, I should be grateful-- lynch is one of the very few genetic cancers, or genetic issues AT ALL that has been coded in the human genome. I should be grateful for that I guess. There are SO MANY genetic diseases that they haven't figured out yet and are probably being treated all wrong, but they just don't know. We have a little to go on and that's A LOT! (wow, I'm actually tearing up. I haven't cried in a few weeks!)
Okay, so, the 5FU pump. It's like a smallish crossbody purse.
I didn't take a pic of the thing so I totally snagged this pic of the exact same pump and bag from this guy's rectal cancer blog http://johnscancerblog.blogspot.com/2010_12_01_archive.html Anyway they hook it up to the port tubing (every drug change means switching the 4" long dangling tubing to a different set of tubing attached to the bag of meds. Can we say WASTE? Oh, and talking about waste, each cycle requires 4 complete disposible outfits for the nurse. They have to wear these protective plastic apron/smock things. They're high necked and long sleeved. Plus crazy thick gloves. And maybe masks? I can't quite remember, but I think there was a mask. Wait, yes, a mask that covered the mouth and nose AND included a splash mask over the eyes. Or... was that the surgical nurse? It's a little foggy in my mind. maybe the chemo nurses were just mouth/nose... anyway, they could wear normal gloves and scrubs with no mask when changing out all the other meds, but before they could open the outer bag of the Oxali or 5FU, they had to suit up. So, once before and once after Oxali, then once before 5FU. Then when I go for my disconnect on the 5FU 2 days later, they suit up again! WASTE, I tell you. I need to do it too though. Whenever I empty my ostomy bag, while I'm on chemo and for 24 hours after (that's a total of almost 4 days every 2 weeks!!). You don't have to wear gloves if you use the potty like a normal human, but having an illeostomy makes things a little (or a LOT) more liquidey and the process of cleaning up the pour spout on the bag makes it more likely that you'll get some on you. It doesn't *usually* happen, but that risk is higher than with normal wiping. But think about this-- it's so toxic that they're afraid it will harm you on it's way OUT of the body, yet they're pumping this stuff directly into your heart!!
So now I'm connected to the 5FU pump and sent on my way. 46 hours of one drop of poison every 5 minutes. 1/2 ml per hour. It makes a little whirring sound every time. It's a little annoying, but you get used to it. The bigger problem is that you're tethered to the stupid bag. It goes EVERYWHERE with you! It just barely zipped into my coat (since I kept pulling my sweater on and off, I put it on just above my tank top). The strap irritated my port. You have to wear it cross-body so you don't drop it. I can't wear it on the right shoulder cause it would be directly across my port, but on the left, it still rubbed the bottom of the port. I suppose if I had boobs, they would hold the strap down, but... well, I have nearly nothing there-- I can't say none, since I've made a new friend who has breast cancer. I have some, just not much! It gets in the way when I go to the bathroom, so I have to put it on the hook behind the door. It gets in the way when I sleep, so its on the nightstand. It would get in the way in the shower, but I'm not allowed to shower at all when it's hooked up. Grr. But whatever. It's not the end of the world. Just a small annoyance. An annoyance I need to wear from Wednesday to Friday every other week.
I did manage to act pretty normal with it on. I even played Wii Fit (Yes, I got home after 9 pm, but I had been on Benedryl and other sedatives and dozed away the first half of the day, and then was given a massive dose of steroids at 5pm. I was WIRED! Surgery or not, I was NOT going to sleep. I was told exercise was one of the best ways to keep away chemo side effects, so onto the balance board I went. I couldn't do any strength or yoga activities since I had an incision in my chest and all, but I did balance activities and a few mild aerobic ones.
I totally reached too far just as Mark snapped this pic. Stupid sore chest! But it shows off the tubing from the dressing in my chest-- this is the only view I had of the thing for the first 2 days. All taped up with the needle in it.
When I was doing the advanced seguey game, it goes up and down hills, and the way the view changes as you climb is a little dizzying. Well, I totally fell off the balance board! I didn't fall on my butt or anything-- I caught myself, but I was a few feet behind the board! I guess even though the steroids were masking it's effects, the benedryl was still at work in my system (It'll knock me right out in IV form!)
I went to bed pretty late the first night because of the steroids. Therefore, I slept late. The next day I actually felt pretty normal. SORE from the surgery, but I only took one oxycodone all day. Not bad. Other than the cold sensitivity, I had no side effects. I was supposed to take a steroid by mouth, but found that they had forgotten to give me a prescription for it and it wasn't in my bag of meds (I have 11 different prescription drugs to deal with chemo side effects!). By the time the nurse got it called in, it was too late to take it that day-- it would have kept me up all night. Well, I was up all night anyway. I just couldn't sleep! I finally passed out around 4. I was alone in the bed because Mark had a cold, so I sent him to the couch (It's not as mean as it sounds-- I have no ability to fight off infections and this is how I am *supposed* to deal with him being sick. Too bad it was too late and I got it anyway). So, I fell asleep around 4 am. But Mark's alarm from the day before went off at 5:30 am (he goes to a men's coffee group on Thursday mornings). And as soon as I woke up and turned it off, the heartburn hit. Count with me, I had 1.5 hours of sleep at this point. From then on, I had to stay vertical! Heartburn progressed. I drugged it. It brought on horrible nausea. I puked. Took a second nausea drug. Then Ativan (anti-anxiety sleepy-making, nausea-controlling drug). I propped myself up with every pillow I could find and passed out sitting up. 2 hours later, I woke up after sliding down a little. Heartburn was BACK. And this time, no drugs were touching it. I puked AGAIN. I took all of my anti-nausea drugs (I have 3 I was allowed to take at this point). Nausea was moderately controlled, but the heartburn was RAGING! If I reclined even a little, it brought waves of nausea on top of the chest pain. EVEN with all those nausea drugs! I called the nurse to ask if I had to take the steroid. I didn't get my usual nurse, and her sub acted like steroids don't cause heartburn. I told her yes they do-- that's why I have prescription meds from the last steroids I was on. So she told me to take them-- Uh, I already did!. Finally, she said I didn't need to take the steroid (supposed to prevent nausea-- um, no, it's CAUSING it! If I thought Prednisone was evil, Decadron is from the devil! My mom agreed that it's POWERFUL nasty!). Finally, they told me to come in early for my disconnect (ended up being right on time between their busyness and several accidents on the freeway) and they gave me fluids (between the puking and not being able to eat/drink around the heartburn, I was a little dehydrated) and Zantac and Aloxi for the heartburn and nausea. After the drugs, I could recline and relax while I waited for the fluids to finish (they take 2 hours! HUGE bag). I had mild heartburn and nausea the next day, but they were controllable with oral drugs. The chemo nurse said I could probably get the Decadron (steroids) removed from my meds from here on out. There's no point since it was causing the side effect it was supposed to prevent.
I went home and felt SO TIRED. Yes I had only gotten 3.5 hours of sleep, but this was worse than just tired. This was the chemo fatigue-- blood counts were dropping. Yay for drugs that kill your blood cells! I went to bed and slept and slept and slept. I woke up to snow, helped Mark dress the kids to go out in it (our first time messing with winter gear in over 2 years!!) then collapsed on the couch. I just sat there for 20 minutes-- so tired. Of course, after 3 days without showering, I HAD to change my bag. And it has to be done on an empty stomach, first thing in the morning (if you're wondering why, putting food into the top end of your digestive system will start it moving. You don't want that while changing things out. In fact, I have to force down 5 large marshmallows on an empty stomach because something in them temporarily shuts down the intestines. No one knows why. But I can tell you that after eating that many of them on an empty stomach-- especially one that is queasy from chemo-- I have no desire to eat them as a treat ever again!). So I showered and changed out the bag, dried my hair, dressed, at breakfast, and then donned all of my winter gear. This was a little scary. I didn't know how I would do with the cold sensitivity. But the kids were at the park sledding and this could be the only snow we got all year (Seattle just doesn't get much-- Usually). I made it the two blocks to the park (luckily the air was okay to breath!) and joined the kids on the hill. I went down twice-- once with each kid, and took pics of Mark sledding too.
Then I went home. 10 minutes was enough. Took Stasi with me too. Her mitts got wet and fell off early on, poor girl! Mark kept Kaed for another 20 minutes or so. I didn't really notice the cold sensitivity until I was helping him take off his boots and got some snow on my bare hand. OWW! I yelled that time. It was the first time I REALLY felt it.
As soon as I came in from sledding, the fatigue hit hard. I peeled off my outer wear and went straight to bed and slept away the day. I hardly had trouble falling asleep that night either-- only took about an hour of lying there (sleep? At night? Not anymore!). I really wanted to go to church, but when I woke up in the morning, I didn't really *wake up*. I bumbled around and helped dress the kids. Once they were in the car, I crawled back into bed. I wasn't sleepy, but I couldn't move, so I goofed around online. I fell asleep right around the time Mark and the kids got home from church. I didn't really see the kids at all that day! I woke up in time to help put them to bed. Then, while I was on the phone with my brother that night, I finally *woke up*. 9 pm and suddenly I could think straight and I didn't want to be horizontal. (I was on the phone with my mom a little earlier and she kept telling me to go down and play with the kids. She would ask if I was sitting up-- I kept getting dizzy when I tried to stand up, but I couldn't sit up long enough for the dizziness to go away-- I kept accidentally lying down again. SOOOO fatigued and then suddenly it lifted.
But what happens when you've slept for 2 days then wake up? You stay up all night. I finally was able to sleep around 5 am. Then slept till noon. Monday I felt tired, but could function. Played with the kids in the afternoon. Tried to sleep that night, but couldn't. I took and Ativan around 2 am and finally fell asleep at 3. Slept till noon.
That was yesterday. There was a huge storm forcast for today. Huge meaning 6-10" of snow. Doesn't sound like much, but in a city that has almost no flat roads, and some that rival San Francisco (usually shorter stretches, but equally steep!), and also has NO plows! (actually, I think there may be 2 or 3), but not enough to DO anything! Snow means the whole city shuts down. Schools have been closed all week-- well, no buses or preschool on Tuesday-- regular classes still ran. Anyway, with this "storm" on the way, I knew I had to run some errands. I thought I could wait until the worst of the snow melted, but there was more coming-- clearly I needed to go sometime, and I knew it wouldn't be safe today. I plotted a route that involved the flatest streets to get to the closest stores that would do and set out (no kids-- Mark's parents were with them yesterday. I wouldn't have risked my first time driving in snow in 8 years with my kids in the car!) I only had trouble stopping once-- was going a little fast and and there was a pretty deep slushy spot right in front of the stop sign. Other than that I did okay. Got what I needed (including a snow shovel-- I thought there was one mixed in with all the yard care stuff the landlord left in the garage, but nope), did a little extra shopping and mall wandering. I hadn't been out other than chemo for over a week. It was nice to feel "normal" for a few hours. I even found fluffy warm socks and a earflap hat with little bear-like ears on it on clearance! I love clearance! I didn't have a good close-fitting hat, so I was glad to find such a cute one. We went to Bible study last night too. My most normal day since chemo started! Until my nose started dripping. A cold. Arg! Or maybe just allergies? Our friends got new cats and I'm pretty allergic. Either way, my nose was POURING and I couldn't sleep until 5.
Today I woke up to snow everywhere. It all fell in the morning while I was sleeping-- I woke up around 1! (well, it continued to dust snow all day-- you had to really look hard to see it falling though). Mark was working from home again. The experience on the bus yesterday wasn't pleasant and they aren't even running in our neighbourhood. I wasn't packing up the kids to drive him 10 blocks to the transit station. Especially since I was still asleep! Around 2 I asked him to take a "lunch break" to take the kids out in the snow since I knew I couldn't handle it with my cold. It turned into a 2 hour break and he shoveled half the driveway (It wrecks our transmission so park on the road-- so it was mostly just a walkway). He had to keep working pretty late into the evening, but it was worth it. I even joined them for about 10 minutes and took pics until my fingers started to kill me. Stupid cold sensitivity-- I was wearing mittens and the temp was above freezing!
I came in and made chicken soup (not as good from boxed broth as from homemade stock, but whatever) and listened to a live webinar on depression in cancer patients. Not any new info, but the chat with my online support group afterwards was good (that's how I've come to think of the people who frequent the chat room on the Colon Cancer Alliance site. Then baby bedtime.
And that's pretty much been my week. I've done a little writing the last three days since my brain "woke up" again. Yup, that's really all I did all week. Oh, 2 nights ago Mark and I did Wii Fit and then played a round of races on Mario Kart. That was fun. Yes, that's an *event* in my life right now. That is sad. But that is chemo. Welcome to the new normal. (wow, I've been working on this post for over 3 hours!!!)