8:22pm. Friday August 22nd 2014.
How I’m feeling: I’m OK. My stomach is grumbling. I’ve only had a couple of tablespoons of babyfood today so I know I should eat – but I really don’t have an appetite right now.
It’s taken me a while to get this post up. I’m only able to comfortably type with one hand. You’ll see why if you keep on reading.
This morning at 10:00am, I had my usual check-in appointment with my oncologist 3 days before the start of each chemo cycle. They always consist of blood work, a visit from a nurse, recently a visit from my stem cell transplant nurse and my therapist and of course a visit from my oncologist. This is all done to check in on how I’m doing physically, mentally, emotionally, to ensure that I’m in good enough shape for the next chemo cycle and to see if I have noticed any changes with anything (skin, breathing, energy patterns, appetite, etc, etc – the list goes on) since the last check-in.
This time, as soon as the nurse took my temperature – things took a turn. He took my temperature gently knowing that my mouth is lined with a bunch of sores (I confirmed, not contagious. Don’t worry. Phew!) and as soon as he saw what the monitor read he said “Whoa! Your temperature’s high” “Oh?” I replied “You look good, though” He replied.
I told him that yesterday after my wisdom teeth extraction (which was by the way a freakin’ easy peasy piece of cake. I could have had the other 3 taken out if I needed to in a snap) as soon as I got home (my mom’s home – I’m staying here until I’m a little stronger and can be more comfortably mobile), I was uncontrollably shivering and was sweating so much – I soaked the mattress. I also told him that I felt the same way – but not as bad earlier on in the week.
My stem cell transplant nurse, Denise came in and said “Oh Carolyn – Dr. Wood (my oncology dental surgeon) left me a message yesterday and was like ‘Denise, you have got to hear what I just saw'” Dr. Wood was referring to my crazy sores lining my bottom left gums, top left gums and roof of my mouth – and my really low platelet count. Dr. Wood had to sterilize my blood before starting the wisdom teeth surgery because low platelet count = super high risk of infection (the mouth has a lot of bacteria in it) = really not safe for anyone forging surgery and chemo. I wasn’t so surprised that my platelets were low considering how my week had been – but I didn’t know they were THAT low. I suppose that’s why blood work is a standard thing I have to do before seeing anyone at PMH and before anyone makes any decision.
Denise told me that I had to be admitted. A second after, I asked her “Wait, so…hold on. I have to be admitted as in – today?” It just really caught me off guard. It always does. “Oh ya, your temperature is way too high for us to be able to send you home. You’re fevering up. They’ll have to feed you (whoops forgot the name of the drugs) through IV”
The nurse told me that the blood work I had taken today showed a better platelet count than the blood work I had taken yesterday before the dental surgery. Yay! But the fact that I fevered up big time – and because of all of the things I experienced this week, there’s concern. He then took Mama Van and I to the REACH clinic and advised me to check in.
REACH (reducing emergency and acute care hospitalization) is exactly what the acronym stands for. It’s available for oncology patients who present to clinic with an urgent care issue. I handed one of the nurses my blue hospital card and health card and she said “You’re the patient? You look good! Go on over to bed #6” I chuckled “Yup. I’m the patient. Number 6? Alrighty” The room is a open concept space with plenty of beds that can all be sectioned off with a curtain.
My REACH nurse said that I’d be there for a while. I asked “As in hours? Overnight? Days?” “At the very least a few hours – that’s what we know for now. But you look good – so hopefully not for too long” I’ve learned to not to have many expectations with this all. And I’m not saying this in a negative way. It’s important to be hopeful but I’ve gone though this type of unpredictable predicament plenty o’ times: See the doc to chit chat about some X-ray results, gets sent to the E.R. Gets sent to E.R., ends up being admitted. Gets admitted, every day it’s “you’ll be here another night” until it’s 13 nights later, somewhere in there gets diagnosed with cancer.
You just never know.
Anyways, the nurse gets more blood out of me and hooks me up to an IV (gets a good vein on the first shot!) and my meds start getting fed to me through it. Mama Van leaves because she needs to run some scheduled errands – as she also didn’t expect this. So, I’m at my bed making friends with the staff/docs/nurses (as I always tend to do). A little more difficult this time around because it hurts to talk, smile and laugh (NooOOooO…my favourite things to do!!!!) I could hear someone to the right of me vomit like crazy. The patient right next to me on my left side is sobbing and is constantly repeating “it hurts when I breathe” and vomits – like crazy. It makes me sad 😦 but happy that they both had loved ones by their side. At this point, my phone battery is about to die – so I post these updates:
and I text Mama Van asking her to bring me my charger, my laptop and my laptop charger.
I decide to pop some of my pain killing drugs and try to get some sleep. I think I slept for about an hour before a nurse had to wake me up to ask me a question. No complaints. I’ll take any sleep I can get these days. I notice that I’m the only one in the REACH clinic room. Even the two patients whom seemed to be in much worse shape than I was were no longer there. I know for sure that the woman to the left of me was sent home. I was just “doot doot doo-ing” waiting for my turn. After all the meds get pumped in to me via the IV, a chest X-ray, a bunch of questions/conversations from the REACH doctor, waiting for a prescription for more drugs, waiting for IV drugs to be prepared and delivered to me, getting a Neupogen injection (definitely no where close to as painful as many have made it out to be), a tutorial on how to use my IV pump, a breakdown on how my entire treatment schedule is now shifted a week (with some additional appointments) and getting more drugs at the pharmacy – I get sent home!!!! I arrived back at Mama Van’s at around 7:30pm. A long and unexpected day – but I’ve had much longer and much more unexpected.
So here’s the deal: This is going to be in me (see photo below) until at least mid-next week to try to get me in to shape for my next chemo cycle which is no longer on Monday (too unsafe for me to do it that soon) but now on September 8th. It sucks – but it’s better than staying in the hospital! I was however cautioned that the moment I feel feverish – to go straight to Toronto General Emergency. It’s something that concerns my team. My entire treatment schedule has been pushed a week – which shifts everything down (see why it’s tough for me to commit to things way ahead?) and I have some additional appointments scheduled.
I’m going to back track and break down how the past week and half has been. I’m getting really good at documenting every (now learning are not so little) little thing. In fact, I’ve jotted it all in drafts in this blog. The details below coupled with my low platelet count were enough red flags to have my team make the call to admit me.
Wednesday, August 20th
My mouth was hurting so much. I had trouble sleeping on this night. I knew it had to do with my teeth on my left side but didn’t know what the hell was going on.
Thursday, August 21st
Woke up restless and in so much pain in my mouth and my head. I decided to call my stem cell transplant nurse, Denise to tell her all about it. She worked on arranging an appointment for me with the oncology dental team – as I would need to see them anyways pre-Stem Cell Transplant (it’s an important part of the process) I told her I was taking Tylenol Extra Strength and it wasn’t doing a thing. She suggested I try Tylenol 1 instead to hold me over.
Friday, August 22nd
I went in to see the oncology dentist. He immediately saw that my wisdom teeth needed to be extracted but due to how tight all of my appointments are and how little time I have in between to recover – he alluded at the fact that it may have to be done after my stem cell transplant (End of October/Beginning of November). I told him that I was in such excruciating pain (And I have a high pain tolerance according to a bunch of nurses I’ve been under the care of at Toronto Gen and PMH). He spoke to Denise and they arranged to have it pulled out very soon – as in they scheduled an appointment for the next week, Thursday August 28th. “Oh my gosh. YES! Thank you so much” I said to them. I don’t know if anyone else has ever been as excited as I was for a wisdom teeth extraction. I was ecstatic. It was so painful I just wanted it out. Denise asked how the Tylenol 1s were working and I told her I hadn’t gotten them yet. I’ve just been in so much pain that I haven’t been able to step out to get them “Oh, Carolyn. Don’t be a hero! Get them” I’ve heard that one a lot from the nurses I’ve been under the care of too. lol
Saturday, August 23rd
I woke up a little tired. I hadn’t gotten much sleep – but did get some. Had a lovely brunch with a friend and some quality “me” time. It was a great day 🙂
Sunday, August 24th
I woke up quite exhausted. I didn’t sleep well at all. But I followed through with plans to see some friends. Now looking back – I probably should have cancelled. While having a great time visiting and brunching with my friends, I wasn’t feeling my best. As soon as I got home, my body just collapsed. I felt exhausted and started getting the chills. I had plans to go meditate with some friends – but my gut told me to cancel. So, I did. And boy, am I ever glad I did. It was the right thing to do. I spent the rest of the afternoon and night trying to sleep.
Monday, August 25th
I woke up feeling better. Wee!
Tuesday, August 26th
I am awoken at 5:00am from pain in my mouth on my left side. I assume it’s the wisdom tooth that’s will be extracted 2 days from now – but I also notice some sores. A bloody sink after brushing and rinsing begin on this day. Not pink foamy toothpaste spit up – RED! I spend the morning rinsing with a solution the oncology dentist gave me, salt + baking soda water and coconut oil. I had planned a date with some of my girlfriends to spend the afternoon at the spa – and so that’s what I did. While I was uncomfy – I still had a lovely time. I also planned a roti and painting jam with some friends. So much fun. My kind of night.
Wednesday, August 27th
I woke up in tears. All night, I was rinsing and taking Tylenol 1s. I’m now not able to eat a thing without tearing up. I know that sores can be a sign of a low immune system – but I also know that I have to get my immune system up for chemo and to fight off the sore infection, the wisdom teeth infection and just any other potential infections we all can catch at any time. I cannot afford to get sick as a chemo patient. It can quickly escalade to hospitalization. The difficultly is that I can’t even nourish myself (to boost my immune system up) without experiencing what is now excruciating pain. And smoothies? Even those were SO painful to get down. I think I drank half of one for breakfast, lunch and dinner but I did jam in a bunch of immune boosting goodness in them – as I always do. I also continue taking my odourless garlic pills (good for immune system). I am limited to the supplements I can take as there is not much research out there re: how it jams with the chemotherapy drugs. That said, I try to do as much as I can with food. I notice something odd going on with the skin on my arms – and a bit on my legs. A part of me thought it may have been spots from getting some sun on Tuesday. While I never get spots like these, my skin has (temporarily) changed so much since chemo. So, really – it wouldn’t be very far off from some of the surprises I’ve seen/experienced. I had to once again cancel plans I had made that evening 😦
Thursday, August 28th
Wahoo! Wisdom tooth extraction day! But first, blood work. I got it done, and then I headed to oncology dentistry. I was so excited! And my oncology dental surgeon, Dr. Wood was hilarious. We bantered a lot (another favourite thing of mine to do!) Before he started the procedure, he noticed that my platelets from my bloodwork were very very low. “Uh oh. Ok, I’ll be back” he said. His assistant came back with pills I had to take that would sterilize my blood. The mouth has a ton of bacteria – and they cannot risk me getting infected. So, they had to sterilize my blood before the procedure. I told and showed Dr. Wood my sores, told him about my night of sweating and shivering and showed him the spots on my arms. My sores then became the star of a photoshoot – with an audience. A couple of dental doctors came in to take a look at them. Dr. Wood snapped photos of them and attached it to a report he sent off to Denise and Dr. K (my oncologist). Anyways, the wisdom tooth procedure was a piece of cake. The tooth looked nasty. I was so glad it was out. Shortly after I arrived at my mother’s place and laid down to take a nap, I started to uncontrollably shiver. I literally could not stop shivering. Even my teeth started to chatter. My brother piled on 4 more blankets on top of me – and I still couldn’t stop. It was kind of scary. I even tried to meditate – nothing. I was sweating so profusely that the pillow and mattress I was on was soaked all the way through. I remember looking up at the ceiling and feeling big droplets of a mixture of sweat and tears fill my ears and then drip behind my head in to the pillow. Before this past week, I had never before experienced tears pouring out of me due to sheer physical pain. Once I was allowed to, I tried to drink and eat hoping I could nourish myself back to feeling better. I’m mostly on baby food right now – which is ok by me because I love baby food. hahah. It’s kind of embarrassing – but I looooove banana and pear. Now, the world knows! But even watery soft baby food is so painful to get down. It hurts so much to eat. The pain by the way is mostly from the sores. I’m barely feeling any discomfort or pain from the wisdom tooth extraction. I’m just extra poofy. Later that night, I stopped shivering and sweating!
Friday, August 29th – Today!
I wake up with a not so soaked pillow and no shivers through the night – and I head on over to PMH for bloodwork and to meet with my team.
After receiving the recent news that had me feeling so defeated (“Radiation won’t be able to take care of the rest after all” “You had some cells that resisted the CHOP chemo treatment you were on” “You’ll need more and aggressive chemo called GDP” “And a stem cell transplant”) I’ve decided that I’m going to just live,
even especially through all of this. With consideration to my limitations of course (learning about them every day), I’m going to go ahead and do the things that I have always wanted to do. I’m going to take this as an opportunity to really allow my relationships that are meant to flourish – to flourish – and to harvest new and meaningful ones! For example, I want to just escape and flee somewhere and get lost alone before I’m admitted in to PMH for 19 days for my transplant (I even had a plan! I got hooked up with a sweet deal and just situation to head to NYC for a few days but now of course it’s no longer doable with the schedule shift. It’s going to have to be last minute to be safe) I’ve started planning fun quality time activities with the people I love or feel a lil’ something something with. I’ve always kind of done this (my friends can attest to the fact that I’m always hosting things for them) but now my network and relationships have shifted through this life changing experience and I can now have more one-on-one time. This also means more one-on-one time with myself.
P.S. Everyone who is reading this right now: A heartfelt thank you for following along! Whether you are doing it to try to keep up with everything that’s going on with me re: this fight, learning about what it’s like as a young adult on a mission to kick cancer’s ass, or for inspiration – it means a whole lot. So much love.