8:45am Tuesday, October 28th. Princess Margaret Hospital. How I’m feeling: Concerned. A little nauseous. I just force fed myself some breakfast. Sometimes that eases the nausea. Next up: waiting for my ginger green tea to cool down a bit – ginger is good for easing nausea as well. We’ll see – I may need to more frequently accept the big guns soon with hard core nausea control meds that the nurses are offering me. “Don’t be a hero, Carolyn! Now’s not the time” – I’ve heard this a bunch from the nurses here at PMH whenever they sense I’m uncomfortable and trying to soldier through some of the procedures and experiences I’ve gone through. Apparently, I’m easier to read than I thought I was.
Something is not right. My swelling is getting out of control. I am receiving hydration fluids via my IV to help protect my kidneys – kidney failure is a side effect from the high dose chemo I am receiving – and will be receiving the hydration fluids throughout my stay here.
Let’s back track a bit.
Saturday, October 25th
On Saturday, October 25th, I received my first hit (of 2) of the super high dose chemo. I was hooked up to it for about 8 hours and faded in and out of sleep throughout. In the evening shortly after the chemo was done I fell really ill. Luckily my mother and sister were with me. I reached a high fever, felt really cold, was trembling under piles of blankets, was very nauseous and threw up a bunch. I could barely speak. Whenever anyone would ask me questions, I could barely move my lips, head – anything to express myself. I just stared directly in front of me. The nurse loaded me with some meds to help with the fever, nausea and pain from my Hichman line procedure – and I knocked back out again.
Sunday, October 26th
The next morning (Sunday, October 26th) I woke up feeling better. Still feeling uneasy but not reaching for the puke bucket anymore – though I kept it real close by. I did feel discomfort around my neck. I was having a difficult time breathing. I went to the washroom and noticed that I was more swollen than ever – in my face, neck, back, upper arms, chest. When the nurse came in, she also noticed a big visible change in my appearance and decided to weigh me. I had gained more than 12 lbs in one day from all if the hydration fluids alone! Remember that I already had come in swollen when I went to Toronto General E.R. on Thursday night (we still don’t know why I initially swelled up by the way. My scans showed no growth with the mass) So, it’s definitely way more than 12 lbs overall. Hydration still needs to be IVed in to me to prevent kidney failure, but it’s a concern that it’s not flushing out the other way. I’m not peeing it out enough. The team decides to give me some Lasix – a diuretic to help get this hydration fluid out of me and to calm down the swelling. And yes, I peed like – 6 times within an hour! Hooray! I received my 2nd hit of high dose chemo. This time, only for 30 minutes. I’m advised to chew on ice before, throughout and after to help prevent mouth sores. After chemo, my nurse made me aware that according to my latest blood work results, my red blood cell count dipped low – a chemo side effect – and that I will need a blood transfusion. And so, shortly after the nurse comes in with a bright red baggy of blood. It freaks me out for a bit – but boy, am I ever thankful for whomever this donor is:
Wow. What a long day. They all are.
Monday, October 27th
On Monday, October 27th I woke up still very much so swollen and exhausted. I woke up a few times throughout the night because I had to adjust my sleeping position. The swelling in my neck at this point has given me a difficult time breathing whenever I turn my head to the left, right or downwards. The nurse takes my weight and we learn that even with the diuretic and lowering the drip of the hydration (forgot to mention that) on Saturday, I had only let go of 1lb. And so, the decision to give me more Lasix and lower my hydration drip even more is made. Once again, I pee – a lot and cross my fingers that I’m going enough because things are really feeling uncomfortable. I feel like the nutty professor at this point. Even my hands and arms are getting crazier:
Before heading to bed, I email my main woman – my stem cell transplant nurse, Nurse A.- about my concerns with the swelling.
Tuesday. October 28th
This morning, I woke up even more concerned. I gave sleeping upright a chance – almost in a 90 degree angle. This again – uncomfortably reminiscent of my situation back in March when I was just diagnosed – and the team was concerned that I wasn’t going to wake up the next day and therefore decided to start treatment immediately. While breathing was easier when my head is not leaned to the left, right or downwards – my arms and hands are out of control now. I woke up a few times from the discomfort from it. My skin feels really stretched and it hurts to bend at the elbows and wrist. I turned to my phone this morning and read a reply email from Nurse A. that was sent to me last night. She expressed her concern with the swelling but made a point that my kidneys MUST be kept in good shape. She also told me that she will come by this morning. I felt instant relief! Phew! I replied telling her about the increase in the swelling in my hands and arms and drastic weight gain:
The nurse took my weight again this morning, and I have only lost 1lb of the hydration since yesterday. Why isn’t this all flushing out?! I’m so worried – and the nurses here are puzzled.
Now, the waiting game. For the doctor rounds and for my Nurse A. to come by. Until then, I have a ton to do especially when it comes to my mental and emotional state. As for my physical state, I have my medical team here to help me with that. Some things on the agenda today: walk around to help with the hydration flush, TRY to eat something, take all of my meds, constant check-ins with the staff nurses, injections, meetings with my psychologist/therapist, meetings with my dietician, etc, etc. The list goes on.
Wish me luck!
For anyone w/ visitation inquiries, please keep on top of my Hospital Visitation Details blog post. I will be updating the schedule as I go as things are very unpredictable – and seem to change by the minute. If you’ve visited me in the past at the Toronto General Hospital and Princess Margaret Hospital the last time I was here, well this is an entirely different ball game this time around!
If you have any questions after reading my blog posts, feel free to connect with me via text message or Facebook messenger – as a handful of you already have been 🙂 Otherwise, shoot me a message via my Contact Me page.
To my friends, acquaintances, colleagues, family members and strangers whom have been following along: thanks so much for your love, support and positive vibes.
To my team here at PMH: I really would not be able to do this without you. You rock!