I’m alive! Well… maybe those aren’t the right words, but I apologize for being off the grid. I’ve been shy to write, unsure of how much to tell and what you want to hear. Just so we are clear… I’m doing ok, tired but good.
Please let me explain…
It’s been 28 days since I last wrote. 28 days that I wasn’t prepared for. 28 days is a long time so I have a lot to say with a lot of pictures so here goes.
We celebrated the “last” day of my original treatment which was 5 weeks of chemo/radiation – I even made a cute little video. At first I didn’t want to make a video or celebrate it because I knew that I had “more” treatment scheduled and it didn’t feel like I was “done” anything as I knew that I had to go into the hospital for internal radiation, however, after talking to a lot of people including my medical team they encouraged me that this was an important step in treatment and it was something to be proud of. So we celebrated. We even went to the top of the CN Tower for a celebratory dinner at 360 and it was amazing – we didn’t even get an extra course. I’m always complaining when we go out for dinner as the chef always sends “an extra course for Victor Barry” or so it always seems so I wanted to go somewhere we could be “like the rest, invisible” and so we did, or we tried. I felt like a tourist and it was exactly what I needed.
I was told that the brachytherapy would be difficult but that they would manage the pain control and to bring movies that I might be bored of all the laying flat and waiting around. So I believed them even though I was skeptical – I should trust them, they know the drill – I’m not the first one to go through this and after all, I was in the hospital so what could go wrong. Well…
I’ve mentioned this before but let me remind you all that I don’t do well on any drugs – I’ve had doctors tell me before I would make a terrible drug addict because I’m so hyper sensitive to everything. What does this mean you wonder? Well… it means that sometimes when your so sick and projectile vomiting across the room like a dragon fire vomiting monster (ps- reminder: while laying perfectly still and flat because I can’t move) due to this “contraption” stuck up in my woo-haa. So there solution was: take her off the pain meds to control the nausea because she can’t move around and have this contraption move or fall out of her woo ha because then we would have to do the surgery again to put it back in.
But… when they take you off the pain meds for an extended time period then nothing controls the pain and you feel like someone is taking a sharp knife to your lady parts and stabbing you for hours on end and even though your crying, screaming for help – nothing or nobody does anything about it because you’re the “rare case” that is soooooo hyper sensitive to everything they give you. You watch a team of nurses and doctors go over your binder and look at the notes and discuss what they should do next. They discuss it right infront of you like your not there and often glance back at you and give long stares like… huh, this is crazy – what should we do with this patient.
Let’s talk about the itching… they left me without pain meds in the first day for 5hrs and coming down off of the drugs (for me the first week was morphine) I could or may have scratched (what I could reach) the first layer of skin off of me because I was so itchy. They had been giving me pain meds every 2hrs and even that was not enough for the pain. You know that saying we always say ‘lightly’ in conversation… “omg… I wanted to die!” Well, I didn’t want to die, at one point I was in so much pain I thought this is what death or torture feels like – what I wanted was to go into a coma for a couple of days and wake up at home in the comfort of my bed with 1000 thread count Egyptian cotton sheets. Clean sheets. I wanted a nice hot bath followed by a clean sheet cozy bed, cozy night time socks and a soft fan for the white noise and sole purpose of comfort. I actually remember begging Victor to tell them to knock me out for the time so that I wouldn’t feel the pain or remember feeling this way.
Do you get why I haven’t wrote for 28 days?
I wanted to be honest but really felt like I had to get back to the other side in order to say hello honestly again.
Let’s re-visit my treatment plan for those who are just catching up and can’t be fucked to read back on the blog. Don’t worry – I get it… I’m a ‘coles note’ kinda girl myself. Then we can go back to how the in-hospital treatment stories.
- Diagnosed with Stage 2B Cervical Cancer in July
- Recommended Treatment Plan – Chemoradiation 5chemo & 25 external radiation (For chemoradiation, you have external radiotherapy as normal (Monday-Friday), but you have chemotherapy at the same time once a week (mine was Wednesdays) throughout your course of radiotherapy
- Started 5 week treatment plan on August 26th 2015
- Finished 5 week treatment plan September 30th 2015
- Week 1 of Brachytherapy (internal radiation) in hospital patient (3days) – October 12th
- VOTED in the hospital – they came to me! Didn’t have to wait in line – thank you Cancer and congrats Justin.
- Week 2 of Brachytherapy (internal radiation) in hospital patient (3days) – October 19th
- Week 2 of Brachytherapy caught fever of 39.4C on Wednesday afternoon from infection (which they thought was sepsis because I was showing all the signs of it) and stayed until October 24th PS- didn’t have sepsis… thank god.
- External Radiation Boost – 6 treatments starting Friday, October 23rd 2015-Friday, October 30th 2015
Some refreshers of the Radiation Treatment:
Radiotherapy uses high energy waves to treat cancer. You can have radiotherapy for cervical cancer externally or internally.
External radiotherapy treatment means the beams are directed at your body from a machine that is similar to an X-ray machine. This type of treatment is given in the hospital radiotherapy department. You usually have this once a day from Monday to Friday with a rest over the weekend. External radiotherapy treatment for early cervical cancer usually lasts for 5 weeks.
Internal radiotherapy means a radioactive source is put into your vagina and up into the womb. This stays in for either hours or days (in my case it was 2days) to give an extra boost of treatment to the cancer itself and the area close by. Sometimes doctors use radiotherapy after surgery to boost the Internal Radiation.
So back to the stories. They ended up getting my drugs and nausea under control and even though I was in a lot of pain the nausea was better and I got to go home late Wednesday night with the help of my older brother Chris wheeling me out of there and Victors PIZAPIE get-a-way car. We had convinced the nurses I was well enough to leave, when really I should have stayed the night. I was exhausted on Thursday but feeling over all really good considering what my body had been through. I wasn’t really looking forward to going back to the following week but I was hopeful that they wouldn’t make the same mistake twice.
Going back to the hospital on the following Monday was daunting, but again I had really convinced myself that they would know better this time how my body reacted and would have a plan for me. The week before Victor’s sister Jenn had flown in from Vancouver to watch the girls at the house and this week we had taken them to Cindy & Kyle’s so that they could hang out there while we were in the hospital. So grateful for friends and family during this time – can’t express enough of the kindness and love going around.
Coles notes… it was better this round. Not 100% better – but better. However, I warned every nurse, doctor, porter… everyone of the “rarity” patient I was. I’m sure they thought I was nuts. I begged for new drugs and Victor was my biggest cheer leader trying to make sure that I wasn’t in the pain I was the week before. I made sure to bring my own little fox bag full of drugs as backup… just incase I needed to double up on anything. PS- that’s not recommended but I wasn’t taking any chances. I got my same private room again – they even said that to me. “Hi Nikki – you have your same room, you know where to go!” Which at first was comforting… then I hated it. “My room?!” Why would anyone want a room on the 17th floor of Princess Margaret Hospital. Brutal. But… whatever – let’s do this. So, they changed up my pain meds – gave me a heavier pain med that doesn’t cause as many reactions and put me in la, la land. Hello?!! Where was this last week? I was in the land of rainbows and unicorns and it was a completely different experience. I was flying through treatment and looking forward to going home. Well, that was until I spiked a fever of 39.4C on Wednesday afternoon. I was dazed and confused, literally. I was so sick, vomiting and completely not myself and the doctors were concerned and I wasn’t going anywhere. The next Thursday I slept most of the day – the special team of Infectious Control Doctors came to visit me, I had moved from Grey’s Anatomy to an episode of House and I was so high on drugs I probably thought I was actually on a tv set. I had a fever they couldn’t control and I had low blood pressure with a high heart rate. What’s the concern. Sepsis. What’s Sepsis? Nothing good. If you google it says… Sepsis is a potentially life-threatening complication of an infection. Awseome. Thing is, I didn’t even realize that this was the concern until the day before I left – I was so out of it. Truly not myself. I mean shit… I was in for internal radiation Cancer treatment… now I’m one of the “rare” cases again that might have a life-threatening complication from an infection. Seriously. Come on people.
So… off I moved into another room as I was staying a while. Roommates. Let’s talk about roommates. Or… let’s not. Ugh. Well, I hadn’t really thought that I would be staying longer than my 2-3days and I really hadn’t thought or prepared myself for a cancer roommate – nevermind a little old lady that had cancer and diabetes with open blister wounds. Open blister wounds. Yup. May I remind you how super sensitive my sense of smell is right now? Well, that mixed with open human blister wounds is… a lot. You all might want to puke in your mouth right now, difference is I did. Lovely old lady but… wtf. Get me out of here.
So, I thought maybe I would be going home the next day but Doctors told me on Friday afternoon they would be keeping me for the weekend and they didn’t want to take any chances. I cried. I was sad. Devasted even. I hadn’t seen the girls since Monday morning and I felt better… I didn’t want to stay – I didn’t feel sick and I didn’t feel like I belonged. I’m not really a “mom” that longs for her girls, however, I do get to spend a lot of time with them – I’m lucky that way. But I found myself exaggerating to the medical team… “Please… I’m a new mom and I haven’t seen my babies since Monday!!!” People seem to have more compassion for a new mom – I felt horrible for stretching the truth but I just wanted out. I felt like I was stuck in a crazy person hospital and I was the only sane one there – but judging on me reading back over my blog and how I was behaving I probably looked and was acting like a crazy person. I strolled around the hallways pacing with what little energy I had with my IV and highly potent antibiotics (because, after all they did think I had a possible life threatening infection) trying to “show” them how strong and how normal I felt. The smells were so bad in my room I couldn’t use the washroom, I actually got up with my IV and went down to the public washrooms. True story. So when I found out I had to stay I couldn’t handle it all – it was all too much to bare and I balled my eyes out and in that moment I wanted to tear the IV out of my arm and “break free” and never turn back. And yes… the song “I want to break free” by Queen came to mind and yes… I started singing it. Loudly. It seemed appropriate at the time. I was definitely having withdrawals from the extreme amount of pain medications and I was crazy moody – not to mention the hot flashes and moodiness from the menopause symptoms. Not pretty. I felt and thought I was loosing my mind – I was desperate to be anywhere else and I hadn’t felt this way through any of my treatment yet. It was the first time ever that I was like… Fuck this… I am not interested in having cancer and being an in-patient.
Insert screaming crying rage filled lady in middle of ugly cancer hospital here.
Insert most patient husband beside crazy lady here.
Insert someone saying: I ka-rum-ba.
Insert: “I want to break free” song by Queen again. Repeat.
Insert: “Calm Your Mind, Warm Your Heart” mantra x100 then repeat. Thank you Catherine Phillips
So… I stayed and Victor requested that I move rooms and after a long chat among head nurses they moved me and my new roommate Rose was lovely. It was Friday night and the Blue Jays were playing so that was a fun thing so Vic and I set up shop in the lounge with the Blue Jays Game – life was good. I had taken my deep breathes followed by my Adivan the nurse had suggested I take (again… probably cause I was acting like a crazy cancer patient lady) and life was manageable again. Then… Heather Holmes surprised us with a visit and we watched the Blue Jays game together. Sigh… things were ok. There were amazing sounds of Blue Jays excitement of fans and sports commentary then… to our surprise down the hallway the reality of our surroundings came back to life where the sweet screams of death from Mrs. Campbell room escalated. When Heather asked me what all the noise was I replied softly and quickly with my eyes stuck on the ballgame… “That’s Mrs. Campbell dying.” Heather’s response was, “dude – wtf, are you serious?!” I didn’t answer – I didn’t have to. I remained staring at the TV screen. The day before she had been screaming all day for the “Lord to take her & Momma loves you!”. It was sad, but a huge part of me was relieved for her that she wouldn’t be in pain anymore. And so we and the others in the lounge went back to the Blue Jays game while the screaming of death and sounds of tears went on for 45mins, friends and family begged for the doctor to save her and please don’t take her from us. Someone uncomfortably asked if they should shut the door to the lounge and I asked for them not too. Strangely the vote was to keep the door open. The lounge was a mix of patients and family sitting around watching the Blue Jays game, it seemed like the most normal thing to do given the circumstances. I sparked up and said… “I’d rather hear them and know what’s going on then to hear muffled screams and not know.” Most everyone agreed. It continued for a while and then they had to have security intervene to have her body removed. I asked for double my dose of sleeping pills that night and the nurse didn’t hesitate. In the morning I found myself back up, curious to walk past her room to see if what had happened was a dream or if was indeed a reality. I think I would have felt better had the room been completely turned over and ready for a new patient but it wasn’t. Her name “Mrs. Campbell” was still on the outside of the door and her room was untidy with old food containers most of them coffee cups left over from what I assume to be her family & friends. There was also a lounge chair that you don’t see in the other rooms and I assumed that was because her “someone” was sleeping beside her everyday knowing that it may be the last. It was heartbreaking. She was gone. I’ve been documenting this entire experience and I’ve taken photos of almost everything, most of them I would like to share including the one where I have puke selfie. No joke, it’s actually pretty funny. I had my phone with my and as the cleaner mopped the floor of the empty Mrs. Campbells room I wanted to snap a pic of the sheer reality of what was happening but I couldn’t bring myself to do it. I even did a second lap around because I was angry that I didn’t take the pic, but when I returned to the room after my lap – the “pic was gone”. The room was more clean, and the documentation would have been not the same. You get it. It’s strange that I felt this way but it’s my process I suppose. I hadn’t really thought much about the fact that I was staying on a floor that had dying cancer patients. Mrs. Campbell was in a “private room” much like the one I was staying in and in that moment I was so grateful for my roommate – no one wants a private room in a Cancer Hospital.
So… that’s where I’ve been. No where you would want to be and I wasn’t sure that you would want to know, but now you do.
28 days I wasn’t prepared for.
4 extra days of in-patient hospital care that I was really, really, unprepared for.
Lots of stories and met lots of cancer ‘friends’ if you could call it that. But that’s another post.
Want to hear the good news? I know you do. So… the good news is – the tumour that was 3cm is now almost gone and in many small pieces and although they don’t know if there are still live cancer cells they say it’s amazing progress. The lymph nodes after my internal radiation have finally responded and have started to shrink which is a great start and Doctors say that the treatment will continue to work for the next 6months. I had 6 radiation treatment boosts and I’m overall I am feeling good. Tired. Super super fatigued. My immune system is low and my hemoglobin numbers are at a low 94 and I started in the 130s, nothing to be super concerned about they just recommend that I rest up during the next couple of months.
So, what now? Well.. I have an entire journal of things to still talk to you about when I am feeling better and it’s the waiting game now. We wait 6months before they do new scans to see if treatment was successful. Someone asked me today if I stopped my blog and my answer was absolutely not but that the last 28days has been difficult for me. Reminds me of the movie 28 days. I kinda feel like I’ve been at a camp reflecting and taking my time to come back to human life. I never thought I would say that if you would have asked me back in July. Honestly. Nothing prepared me for this last month, emotionally and physically so you’ll have to excuse me for my absence but I’ve been trying to find my mojo again.
I had coffee for the first time yesterday. I feel like that’s a good sign of me feeling better as I haven’t had one since the middle of august. I also drove the car the other day – something else I haven’t done since August. I made a conscience decision to not drive a vehicle during treatment as I sometimes have weird reactions to drugs and I was on a lot of them and the fatigue/zombie like symptoms at times was unrecognizable to me. Something probably similar to sleep deprived moms, and considering I’m a new mom as well I just thought it was a bad combo.
Wanna hear the funny part? My last day of my treatment was Friday, October 30th and I walked home from the hospital. I was by myself, Vic was at an event and I was feeling good so I wanted to go by myself and it was a beautiful day out. On my way home from treatment I had to pick up a package and on my way out of the post office I left my ID behind. I came out of the Post Office close to College and Spadina and there was no traffic so I ran across the street. This is something I don’t like to do. I was trained from a young age from my mother and father to always cross the street in safe zone, cross walk or street lights – always be careful look both ways. Shit – look all ways my dad would say as “the city is dangerous” with crazy mother fucking drivers. Well, I ran across the empty road and then I heard the voice of this screaming China man from the Post Office.
Reminder: I’m super sensitive to anyone screaming right now.
“Miss.. Miss – you left your ID!” At the top of his lungs… screaming loud.
And there it was… my funny but not so funny moment where I almost get run over by a car on my last day of my cancer treatment.
I turned around quickly and continued walking, I might have even skipped or ran – I was happy. Not exactly sure but I do know that I was not paying attention to anything other than the screaming voice at me and then I heard the horn, followed by a loud shrieking noise from the car brakes. I could have reached out and touched the car. In my defense the car came from no where and he was driving fast… like really fast!
It was strangely the closest I’d ever been to my own death and I found irony in that moment. I laughed so hard I peeded my pants. Literally. And then I smiled the entire way home, thankful to be alive, thankful to not have to replace my drivers license because we all know what a pain in the ass that is to get replaced and also reminding myself to not be SO stupid and to start wearing a thicker panty liner in the future.
🙂 Love, Nikki
Private Patient Room – Week 1. Ms. Mckean
Room with a view.
Visitor Lounge. Let go Blue Jays – back to back screenings!
Private Patient Room – Week 2. “Mrs”. Mckean