You know, all the research I did indicated that the Adriamycin/Cytoxin portion of my chemo would be the worst part. The Taxotere & Herceptin aren’t supposed to be as tough. So, when that 4th and final A/C treatment came and went I was just plain thrilled. I kept thinking that the worst was over. Lord willing, it would all be downhill from there. Then that whole mouth abscess thing happened and I kid you not, it was the worst pain I’ve ever had. I was ready to have Mark just shoot me and be done with it. The left side of my face was ridiculously swollen. Mark said I looked like a hamster packing for the winter. LOL The dentist prescribed one antibiotic for me, but after taking it a couple of days and not really feeling any better, I stopped in down at my oncologist’s office and he added a second antibiotic to the first. So, we took it up to the pharmacy, got it filled (along with a new, stronger pain med he also prescribed) and I took the first antibiotic as soon as Mark brought it out of the store. We got home a little while later and I went to lay down for a while. When I woke up a couple of hours later, I had a few hives on my head and face. Now, hives aren’t all that odd for me because of my allergies. I get them occasionally and with the chemo, Mark and I figured I’m even more susceptible than usual to allergens. So we didn’t worry too much about it. After a couple of hours, they mostly went away. The new antibiotic was one of those heavy duty ones that only has to be taken once a day, which I was grateful for since the other one was on a 4 times a day schedule. I hate taking pills, mostly because I tend to get choked on them. Anyway, the next day came around and I took the second antibiotic and within half an hour the hives were back. I had more of them this time, too. So, it didn’t take a rocket scientist to figure out that it was the new antibiotic. I called the Dr. and he called in another one and I am now officially allergic to Levoquin. So, by now my jaw was starting to feel a little better and the swelling was improving. I kept taking my 2 antibiotics and after another couple of days, I was no longer in constant pain.
I should add that during this time a second abscess showed up. This one was right on my tailbone. It had been sore, but I just thought I had sat on it funny or sat on it too much while I felt really bad the week before. It was very sore, but I didn’t know for sure that it was an abscess until it started draining just a little bit over the weekend. Mark and I made more than a few jokes about how long the root on that abscessed tooth must have been for the abscess there to travel all the way down my spine and pop out on my tailbone! LOL I figured I’d have to call the Dr. on Monday (October 25) and have him look at the abscess. I was also thinking that I was already taking 2 antibiotics and surely they would keep any potential infection under control.
I didn’t feel all that well when I woke up Monday morning. Mark was actually off on vacation. He’d taken time off to go to work for a few days down in Tennessee for Colgate, but when my tooth issue became such a mess, he wound up staying home to make sure I’d be okay. Monday was his last day off. He was supposed to go back to work on Tuesday & Wednesday.
As the day went on, I was laying on the couch and I just kept feeling worse. Eventually I realized I was running a fever because I was freezing to death. I headed into the bathroom to check it and it was high, but not in the danger zone yet. (I was told in chemo training that if it hit 101.5 I was to go to the ER.) I have a small heater in my bathroom and I fired it up and parked myself in the floor in front of it. Then, once the chill was off of the room, I took a hot shower. Of course, this was the wrong thing to do because it all just drove my temperature higher. I got out of the shower and got into bed. My temp was higher at this point, but I knew the heater and the hot shower would have added to it so I told Mark I was going to wait a half hour or so before I checked it again. He insisted that I try to eat something, though I wasn’t hungry at all. He made me some soup and I ate a few spoonfuls of it. When I checked my temp again, it was right at 101.6. I really didn’t want to go to the ER, so I had Mark call the Dr.’s office. He was in with a patient and the nurse said she’d talk to him and call me back. About twenty minutes later I checked my temp again and it had climbed to 102 so I told Mark we were just going to go ahead and go to the hospital. He called the nurse back and let her know we were leaving. We took the thermometer with us and I was sure that by the time we got to the hospital my temp would have gone down. Especially since it was cool out that day and Mark had the window cracked as we drove. But just as we got to Madison I checked it again and it was at 102.7. In the ER they checked it using an oral thermometer and it was below 101. I told them I’d just been drinking a cold drink so they said they’d check it again shortly. Half an hour or so later the nurse came in and checked it at my armpit. It was 101 or 102, I can’t remember. But she decided to recheck it orally on a whim and it was 103.
The Dr. ordered a CT scan of my new abscess and sure enough, there was a small pocket in it. So he lanced it there in the ER. NOT a fun experience! The lancing wasn’t bad, but those shots to numb it hurt like the dickens! They put in an IV and loaded me up with a new antibiotic, and eventually gave me some Tylenol down in the ER just before they moved me upstairs to a room. The fever broke and I felt quite a bit better once it did. I was seriously hoping that I might somehow get to go home the next day. Should have known that wasn’t going to happen. They put me on a total of 4 different antibiotics. 3 were oral and one was a giant dose administered through the IV. We found out right off the bat that the IV that was put in down in the ER wasn’t good. They had trouble with it when they tried to administer the contrast for the CT scan, but once I got upstairs my nurse couldn’t get it to work at all. So that IV came out and a new one went in on my other arm. I should have just had them access my port, but I was still hoping I wouldn’t be there that long. Apparently the IV antibiotic is fairly nasty. It burns up your veins so it had to be administered over about a 4 hour drip.
That night my fever spiked again. It hit 103.5. We tried Ibuprofen or Tylenol (can’t remember which because they gave me both) but it didn’t drop fast enough. So we resorted to cold washrags in my armpits and the bends of my elbows. This eventually worked. I swear, coming down off the fevers was almost as bad as having them. When the fever was up I would shiver and chill so hard that my teeth would chatter. Then, once it started dropping I would first get hot. I mean hot like a oil radiator. This would inevitably be followed by absolutely disgusting sweating. I’d be soaking wet. It really wasn’t any fun at all.
I saw the Dr. early the next morning and he let me know that I’d be staying in the hospital until at least Thursday. I was not happy, but Mark and I both knew that it would be crazy to try to come home when I was spiking such high fevers. Long story short, my fever continued to do a wild yo yo over the next couple of days. It would almost always spike when I tried to sleep. Not that sleep was easy to come by. God bless my nurses and techs, they were all very sweet and took great care of me, but with all the antibiotics being taken on a bunch of different schedules and them coming in every 4 hrs or so to check my vitals, sleep wasn’t something I got much of. Even when they did manage to get me a fair block of time without either a pill to take or vitals to check, I’d just wake up an hour or two after going to sleep with another fever. I got very skilled at recognizing when it was starting to climb.
My nurse on that second day decided to access my port for me. I was glad because after just 2 infusions of that antibiotic in my arm, it was starting to hurt. That’s a big part of why I have the port. The Adriamycin chemo is what’s called a vesicant. Basically, if it leaks out of the vein as it’s being administered it can literally burn up whatever tissues it touches. (This is the same kind of stuff used in WWI as a biological weapon. Read: Mustard Gas.) It is so toxic that it cannot be administered through a common vein. The port places a catheter into one of the main veins in my chest and runs all the way to my heart. It is accessed with a nifty needle contraption that slips into a “dock” that’s implanted just beneath my skin. I’ll keep the port in for the duration of my chemo. That’s more than a year. They may even leave it in place a little longer than that, just to be on the safe side.
The port (and it’s catheter) allows them to administer toxic or irritating drugs like the chemo or this antibiotic without damaging my veins. It also meant they could run the antibiotic infusion at about twice the speed as they could when the IV was in my arm. That made things a little easier, though my arm is still a little sore from the first couple of infusions I got.
Mark wound up having to take off both Tuesday & Wednesday because he just couldn’t bring himself to work while worried about me. I was still spiking fevers at night when I slept. I was scared to death that the Dr. wouldn’t let me go on Thursday and I think he did want me to stay, but I managed to convince him to let me go home. I was so exhausted by then. I had a previously scheduled appointment with my oncologist that afternoon and I called them right after we dropped my new prescriptions off at the pharmacy to see if they could get me in earlier. They did. It turned out that the abscess on my tailbone wasn’t the cause of all my fevers after all. They did a culture on it and found nothing. What they did find was a Urinary Tract Infection that I didn’t even know I had. Turns out that the second antibiotic my oncologist prescribed for me is the one normally used to treat UTI’s but my particular UTI was resistant to it, so it wasn’t doing anything to rein in the infection. The Dr. sent me home with 3 antibiotics to take. And you know I have to take all of them on a different schedule. One is every 12 hrs, one every 8, and one every 6. Basically, I get a 6 hr window once a day to try to sleep. The rest of the time I’m having to get up to take one of these massive pills.
The interesting thing is I never ran another fever once I got out of the hospital. By the time I left Thursday, they were pretty much keeping me dosed up on Tylenol and Ibuprofen just to keep the fever at bay. I took the nest regularly scheduled dose of Ibuprofen while I was sitting in the Dr.’s office. I missed the next regular dose by a couple of hours that evening because I pretty much went to sleep when we got home. In the hospital, my fever would usually spike as soon as the Tylenol or Ibuprofen wore off. Sometimes even sooner. So I was amazed I didn’t have a fever when I woke up. I went ahead and took some Ibuprofen, but that was the last time I took any and no more fevers. I will admit that I’m a little worried that the mouth abscess or some other issue will pop right back up once the antibiotics run out, but I’m just going to trust that God will keep them all at bay.
This has not been a fun time. I was so exhausted that I pretty much slept for the first 2-3 days after I got home. I couldn’t believe how exhausted I was. I feel a lot better now, but I’m still pretty tired. Of course the infection means we had to put off my next course of chemo. I see my oncologist next week to talk about it. The fever is gone, but I’ve been having problems with my back ever since I was in the hospital. I was on a muscle relaxer while on the chemo because of issues we assumed were caused by either the chemo or the Neulasta or maybe both. After finishing that 4th chemo course I went off the muscle relaxers. In the hospital my back started bothering me again. I got a refill on the muscle relaxers but so far they haven’t made much of a difference. I have issues moving around comfortably and bending over more than twice is almost impossible. My back just seizes up and that’s that. I guess I’m going to wind up having to go back to the Dr. about it and see if we can figure out exactly what’s going on. Sitting around all the time probably isn’t helping, but it’s a catch 22. I hurt if I move (or just feel too bad in general to do much) and not moving probably makes it worse.
I had to laugh last Monday, though. When the Dr. let me out on Thursday he only did so after making sure I’d follow up with my family Dr. on Monday. So when I saw him he was going over my chart and Mark and I were laughing about all the various issues I’d had over the past couple of weeks and he said, “Well, it could always be worse.” There’s my motto again! As bad as the pain from my mouth abscess was, and as unpleasant as those fevers were, I knew very well as I went through it all that it could be worse. I have so very many things to be thankful for. I have access to the medications I need because we have good insurance. Not just good, awesome. I’ve had 4 chemo courses so far with 4 more Taxotere courses to come and a year’s worth of Herceptin. The price tag for EACH of those first 4 treatments is over $20,000.00. Yeah, that’s twenty thousand dollars times 4. I don’t know if the Taxotere and Herceptin will be just as expensive or cheaper, but I do know that I am not paying a penny for my treatments. With all the surgeries and Dr.’s visits, I hit that out of pocket maximum pretty early on. This insurance was dropped into our laps right at the same time that I was diagnosed. Tell me that wasn’t God’s Providence! He knew what was coming and provided Mark with a job and insurance right when we needed it even though we weren’t looking for it! I am so amazed by how He provides even when we don’t know what we need. I’m even more amazed that so many people out there call something like that “coincidence.” It’s sad to live your life relying on accidents, coincidences and lucky breaks to help you out when you’re in trouble. I’d much rather trust that God is in charge and will always do what’s best for me, even if I don’t understand what He’s up to.
So I’m a lot better than I was this time last week or the week before. My back hurts most of the time, but at least I can still move when I need to. And a little bit of praise for my hubby. He’s doing it all around here. He does the dishes and laundry and even cooks. My appetite isn’t all that good, probably partly due to the antibiotics. Mark made us a pair of steaks day before yesterday and it was pretty doggone good. One of the best things I’ve eaten since I first got sick a couple of weeks ago. Not much else has been very appetizing. I even made a big pot of vegetable beef soup and though it tastes okay, I haven’t felt much like eating it. Half the time I make something then don’t actually want to eat it. I’m hoping my appetite will come back once I finish up the antibiotics. That’ll be in the next day or so. It’s not like I can’t afford to lose some weight, but I don’t like the slightly queasy feeling that accompanies the lost appetite. Food smells tend to make it worse, which is weird because I didn’t have any trouble with that while actively on chemo. That was another issue with the hospital. The food is just plain AWFUL! I told Mark that the moment I lifted the lid off that tray whatever appetite I might have had vanished. He brought me in a couple of meals but even they didn’t sit all that well with me. It really stinks to be hungry with a growling stomach but to get nauseous at the thought of actually eating most things. LOL Like I said, it could always be worse, though. At least I can eat. Some can’t. And though I’m kinda queasy, I’m not actually vomiting. All in all, things are pretty decent these days. I’m just hoping I can get back on schedule with my chemo treatments. I really want to get through the Taxotere. The Herceptin is a targeted chemo, meaning it doesn’t attack my entire body like the others. This also means that it shouldn’t be nearly as hard to take. The Taxotere is a traditional chemo, but they say it isn’t as bad as the A/C, so I want to get it over with. Plus, I still have the radiation to get through. This journey is a long way from being over, but at least it’s easier than the path some are on.