The Spoon Theory aka But You Don’t Look Sick?

This is the best explanation of what it feels like going through chemo. It was written by a woman with lupus and I can’t recommend it enough for anyone looking to better understand someone with a chronic illness or someone going through chemo. It’s been almost 6 months since my last poison and I still have to remind myself that I no longer have to allocate spoons in my day to day.

The Spoon Theory

by Christine Miserandino

My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.

As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?

I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.

– Finish reading at:

Thanks to the Bloggess for introducing this.


When Taxol Attacks

So at this point taxol may be winning the race against AC in being the worst chemo. It’s hard to say because AC had longer misery, but taxol attacks with more intensity in short bursts. Since I’m currently on taxol, it also skews it in it’s favor of being the worst ever.

After I got through the evening of misery on taxol I then had to endure the days and nights of muscle aches and bone pain, It was hella lame. Drinking tonic water helps a considerable amount, but I find that disgusting and it doesn’t fix it entirely. It took a week and a half for me to get to eat normally and be able to stay somewhere without being in pain or being exhausted or having a fever. That lucky day was Thanksgiving so at least I got to enjoy a delicious dinner and dessert with the family.

The fever thing totally sucks because if I get a fever of 100.4 or greater I have to go to the emergency room which would be tons of fun. I had three nights of fevers in a row and none of them thankfully got above 99.9, but it’s really stressful to have a fever and go to sleep with one with the emergency room hanging over my head. It means that when I wake up in the night I have to check my temperature which means waking up more than I’d like to at 2 or 4am. Luckily each time my fever had broken, but still super lame.

The other thing I have learned about taxol is that it is significantly more exhausting than AC. Just doing a little bit exhausts me to the point I have to go lay down for a few hours. Even if it’s just sitting around hanging out with people. I went for a walk in the park with A. and was pretty out of it from how tired I got and needed a few hours to recover from it. I’m feeling like an old lady between the aches and pains, exhaustion, and hot flashes from the meds/chemo. Couple that with my love of feeding the ducks/geese/swans and I’m in my 60s at 30.

Anyhow, so I had my second dose of taxol Monday which means I have just two more to go which is very nice. The second dose of taxol though was not for the faint of heart. I found out from my doctor that when they tested my levels this time (they test a ton of different things before they sign the ok for chemo each time) that my platelets are low and my liver enzymes are high. Both of these things are not unexpected, but it’s a little nerve wracking because I don’t want anything to mess with my schedule. If something is too off they will postpone your chemo treatment and right now I have the week of Christmas off and complete treatment the week of new years. I really like the idea of leaving all this in 2014 and also being able to eat on Christmas because my in-laws are fantastic cooks so I will be devastated if I have to postpone a dose. Can’t I have anything nice cancer!?

For those of you that didn’t pay a lot of attention in grade school science and are too lazy to google, platelets are what create blood clots. In addition to making sure I don’t get cut because my body isn’t really equipped to fight infections right now since it’s dealing with being poisoned, I’m now doubly on the safety look out since it sounds like scabs aren’t going to be easy to make right now either. No problem since I’m a total klutz.

The liver enzymes I’m too lazy to google about but apparently we’ll be keeping a close eye on that reading for my next visit so this is the one that I think could keep me out of chemo. Hopefully my liver can toughen the hell up. If it could make it through college with me, it should be able to handle a little poison every two weeks. Shouldn’t be any big thing compared to that 151 shot contest I got into at 19.

So the first dose of taxol I took a heavy dose of steroids as a preventative measure in case I had an allergic reaction to the taxol mixing agent. Yes, even the stuff that they mix the poison with attacks you apparently. Lovely. So I was fine with it so this time I didn’t need to take it. Well about 15-20 minutes into getting my dose of taxol I went to the bathroom and when I came out I knew something was wrong (no my pee wasn’t bright red, that’s just AC). However, my face was turning bright read, my head felt funny, and my chest was tightening. After a few minutes of sitting in my chair and feeling progressively worse, I got A’s attention and told him to get a nurse. He looked pretty alarmed (probably because I looked like I had a tomato for a head) and got the nurse quickly. Then it was all hands on deck as they stopped the taxol and started pumping my IV with stuff to combat the allergic reaction. I also got to get hooked back up to the blood pressure cuff and the heart rate monitor. Very reassuring. I’m starting to hate that blood pressure cuff. I had my blood pressure taken 5 times on Monday. It gets aggravating. Then to top it all off I started throwing up which then gave me a headache. I know this may sound ridiculous to all of you, but I felt really bad about it because I was that person making everyone else around me who was getting chemo have a more miserable time. Not my fault, but it sucks getting chemo and I’ve had a few people make it worse for me (hi dementia lady, way too nosey republican lady, smelly soup dude when I felt super nauseas, and loud phone talker lady) and it sucks even when it’s not their fault when someone makes it even worse. So I hate to be that person.

Eventually they got everything under control and my doctor gave permission for them to start it up again at a slower rate. He also came up to check on me which I appreciated. Another thing that makes me feel like I made the right decision getting my care here. I fell asleep after because I’d gotten up early, been pumped full of Benadryl, and then got really sick. I think it was less of a nap and more of a shutdown because of everything happening to me. Whichever it was, I felt better afterwards and continued watching the latest X-Men movie which was nice and long and really not bad. A. and I got to be in the hospital from 8:50-5:30 with all the craziness and delays.

The good news is that I felt ok last night and I’ve felt good all day today. I felt good after the first chemo, so nothing too exciting here, except that because I took a steroid and have been eating safely today I think that I’m going to make it through without getting violently ill which would be nice. I’m expecting to wake up with aches and pains starting tomorrow, but not getting super sick tonight would be a win. I also went to the movies with A. today and saw the new Hunger Games movies with like 5 people in the theater which was awesome. Old people schedule has it’s perks.

I’m Still Here

So this post will probably be less chipper than normal because I’m in day 5 of my new chemo, and day 4/5 tends to be when you get the chemo blues which sounds nicer than saying you get depressed. Except I guess I just said it anyways.

As I mentioned in earlier posts, I was hoping that taxol would be easier, but not expecting it. As ever, I am my own unique snowflake and it hasn’t been easier, it’s just been a new and different form of torture to get through in this cancer journey. Fun times. Like I said in the first sentence, less chipper.

I felt much better after getting the taxol than the AC and woke up feeling pretty good too. This is where I made some mistakes. I decided to eat like a normal person the day after chemo. Not a good move. Maybe I would have gotten just as sick anyways because you never know with this stuff, but maybe I wouldn’t have. Either way, I won’t be doing that again. I feel like a true member of the chemo club now that I’ve spent several hours throwing up and laying on the bathroom floor. The doctor and nurses always want to know “did you throw up” and finally I get to say “yep”. I also had severe stomach cramps for the entire time, so it was pretty much what I imagine hell to be like in some form. We even called the doctor I felt so bad, the cool thing was that instead of putting us to the on-call person, they actually paged my doctor and he called us back. Pretty damn amazing. He didn’t really have anything to do other than tell me to take whatever anti-nausea meds I had and stick to fluids until I made it to the other side. The main thing they’re concerned with is infection so as long as I don’t have a temperature of 100.4 or greater they’re probably not going to have me come to the hospital, which is pretty much fine for me.

So I made it through that awfulness and then moved onto the achiness and bone pain that taxol is famous for. It’s pretty lame. Since my stomach hasn’t been 100% and I also get the achiness thing, I’m not ready to say this is easier than A/C. I’d say they’re about the same just totally different. The achiness isn’t bad, like no sharp pain or anything that I’m currently willing to take more than advil for, but it sucks to be in pain most of the time. I’m on day 4 of having near constant pain that isn’t enough to do anything major about, but as a constant state of being just really sucks. It’s mostly in my my feet and legs, but every now and then it gets more ambitious and I get it in my back or arms or neck or chest. So many body parts to have fun with. (seriously lacking in chipper).

I take claritin to help with the pain and advil and I’m going to start acupuncture on Monday. I’m hoping at least it will stop after a week like the A/C side effects and I can do a week on or week off. The first time is also hard because I don’t know what to expect for side effect severity and length, it helps to know after this what it will be like. I’m also very hopeful that this will be like the A/C and the first time will be bad (like it is now) and each time will be easier afterwards. This has a good chance, so fingers crossed.

This is my new power jam/cry to/sing loudly song. Not sure how I came across it, but it’s working for me right now. There aren’t any good “I have cancer and this sucks and I need to scream at the world/prove that I’m still here songs” so chick breakup songs seem to fill the niche as best they can.

I’m still here.