I had my second round of Taxol on June 27th and my patience was stretched further than it has been stretched this whole time so far. I had another extremely long day at the hospital – this time it was 7 and a half hours start to finish. Below is what the day looked like:
11:00am Arrive at the hospital because well this is the time my appointment was booked at. The Chemo waiting room is as depressing as you might guess it would be. A lot of sad/sick people, minimal talking and minimal smiling. When I arrive I take a number and wait for the number to be called. When the number is finally called, they take my health card and give me a buzzer (The kind of buzzer you get when you’re waiting for your table at a restaurant).
1:30pm FINALLY my buzzer rings and I get assigned to a chair. Yes, I have to wait upwards of two and a half hours to get into a chair. We asked if we could just come earlier and that might help (sounds logical right?), but they told me that it wouldn’t make a difference because the wait time is typically due to the ratio of nurses to patients.
1:45pm I got poked by the nurse as they find my vein and set me up to some fluids. They made sure I was comfortable with a warm blanket and a warming pad to wrap around my arm. When you have an IV in your arm you tend to not move your hand or arm around much, so there can be a lack of circulation and therefore makes your arm/hand cold.
3:00pm Finally I had all the steroids and Benadryl put through, but my arm started hurting through the second half of the Benadryl drip. It was a weird pain/discomfort. It felt like someone was taking their thumb and just jabbing it into the various areas of my arm. I knew there was no way I could do a further 3 hour drip with this discomfort, so I reluctantly had to get a new poke for the IV. I had done my blood work the day prior and had gotten my right arm poked in order to leave my left arm ready for the chemo. Well, that didn’t work, so I had to get double poked on my right side. Cool.
7:30pm The Taxol drip finally finished. I was the last patient in that chemo ward. UGH longest day.
When I got home I was mainly just exhausted but didn’t feel anything otherwise. This was similar to the last round. Thursday also was similar to the last round in that I was primarily just very tired but otherwise felt fine. It again gives me this stupid false hope that I have powered through and will defy the odds.
So Friday SUCKED.
Friday was Day 3 and when I woke up it felt like I had been hit by a bus, with the bus having turned around and hit me a second time just in case they didn’t get all of me. My body felt so heavy and weak and my head was screaming at me with insane headaches. I laid on the couch for the morning, expecting that I would start feeling better, or at least have the energy to get up and do things like I had the last time. I had made plans to meet my friend Alex for lunch and wanted to stick to the plan at the risk of staying on my couch all day long, which was too sad for me on such a beautiful day. Well that proved to be a bad idea!
It was scorchingly hot out that day and for some reason I thought it would be a good idea to meet Alex on a patio that required me to walk up 3 flights of stairs….. looking back I am realizing how dumb this all was! When I got there and up the stairs I felt tired, but generally OK. Although within a few minutes it hit me full on. That feeling of “I’m either going to puke or pass out”, one that I know all too well. Alex cancelled our lunch orders and we walked into the stairwell to hopefully find cooler air. I couldn’t make it down the stairs so I sat at the top of them until I could get down at least one flight. At the next landing I had to pause again. These are the moments where caring what other people think are out the window. I laid down in the stairwell because if I didn’t, I would have for sure been a goner. So yeah, I was on lying on the ground while people walked passed me and met their friends on the patio for drinks on that awesome summer day. I finally was able to get down to the next level and thankfully they had an air conditioned area where I could lie down and continue to recuperate until I felt well enough to make it down the last flight of stairs and get into an uber.
What a drag. A great lunch date on a sunny patio turned into a near crisis – why is this my life!!
When I got back home I immediately laid on the couch and realized immediately that this was where I should have been all day. My entire body ached. It ached in weird places too. My jaw hurt and the muscles down my throat hurt and were spazzing so it was difficult to eat. I managed to get some soup down but even that proved to be challenging. I definitely got to a state of despair that day and had a couple of breakdowns which included tears. I felt I had been pushed to my limit, my patience was being tested. The type of pain I was feeling is similar to when you get extremely sick, like feverish sick, and your whole body aches – but then times that by 10. By far the worst part of all of it was the headaches. OMG the headaches. I have never had them that bad before. They were totally and completely debilitating. Pretty much all day I had an ice pack rotating from being on my forehead to being on the back of my neck. I couldn’t read or watch anything, and I even had to put a dark shirt over my eyes because the light was too much for me to handle.
Right now you’re probably thinking “Please tell me you took some pain meds?!?!”. Well let me tell you, yes I did, however this time around though I was prescribed codeine. This was because in the blood test that I took the day prior to chemo showed elevated levels of my Alanine Transaminase (“ALT”). Normal levels are between 7-40, whereas mine was at 103. The reason it was so high is primarily due to the Taxol drug, however as a result, my Oncologist suggested I take less Tylenol since Tylenol can be hard on your liver. This then leaves me to take codeine, which I will find out later – is not my friend! My Oncologist also told me that if my ALT levels had been mid 100’s and closer to 200, they may have had to delay my chemo by one week. Not ideal!
For the Friday night, my amazing girlfriends had planned a great night for the Keith Urban concert (he is one of my all-time favs!) but I unfortunately had to cancel because even getting up to go to the bathroom was a challenge, so I definitely would not have survived a loud and crowded concert! It’s these moments when it hits me how brutal everything is because my mind says to me “that is the LAST place I want to be right now” yet in actual fact it is THE place I want to be (when I’m feeling well). It’s very frustrating but what I am to do but accept my fate? Thankfully my sister, RuthAnne, was coming down for the concert so she was able to stay in with me and attempt to bring me back to life. She gave me a couple of amazing forehead massages with coconut oil and eucalyptus, which were so therapeutic and definitely helped. We also watched the Ali Wong stand-up comedy Netflix special which is hilarious – although I merely listened because I had to have my eyes covered and have the icepack balancing on my forehead, so I missed her hysterical pregnant dance moves.
The codeine somewhat helped in that it relaxed me and reduced some of the body pain. It didn’t however help much with the headaches, which was disappointing. The codeine also gave some unwelcomed side effects such as nausea. But not the kind of nausea that I had with the AC drug where I got a massive pit in my stomach like gut rot. This nausea came on when I would stand up and then all of a sudden feel the urge to puke all over the floor, so I then proceeded to lie back down. As you can understand, the codeine seemed to maintain my debilitated state.
So this rather fun time lasted until about Saturday night around 6pm, at which point the last of the codeine had finally worn off so I was rid of the nausea which was an achievement, allowing me to finally stand up and walk around for an extended period of time. I still had headaches and body pain, but it felt way better and I finally felt like I was alive again. I didn’t want to take any risks though so I stayed inside on the couch that night, despite the beautiful evening staring at me through my windows. The last thing I needed at that point in time though was to push myself and end up passing out or feeling worse after what I had already gone through. Mark stayed with me Saturday and was great Company. It meant a lot to me that he sacrificed his Saturday of the long weekend to couch surf it with me, order food in, and watch multiple movies. Dealing with all of this alone would have been a realm I don’t think I could handle.
By the time Sunday came around I was feeling A LOT better, although by “A LOT” it means I didn’t feel like death. I still had headaches that day as well as some pain in my knees and legs, but I was feeling good enough that I didn’t want to waste yet another day on my couch. It was becoming too painful emotionally to be kept inside. I ended up making it to my friend Anna’s birthday party which thankfully included a pool! It was amazing to see everyone even if I had to remain sober and stay out of the sun (both are so unnatural to me!). I thankfully didn’t have to end the weekend with having spent it all indoors. I would have been pretty devastated with that conclusion!
This round makes it incredibly hard for me to wrap my head around the fact that I have to do this two more times. It’s Day 7 today and I’ve had the headaches so bad again that I was motionless on the couch for about two and a half hours. It’s so awful. You can try as much as you want to put ice on it, or essential oils, or drinking more water in the day than you normally would drink in a whole week, but it really is a time game and I have to just wait for them to pass. I can tell you though that once they do pass and are gone for days on end – that is THE BEST FEELING. I finally feel FREE and I literally can’t help but have a permanent smile on my face along with the motivation to conquer life! Just thinking about it makes me crave that feeling. It’s scary to wonder if I’ll get one of those days this round. Here’s to hoping! So far I’m at 0, but I have 7 days left to get one!
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