October 8,2024
Oscar was discovered during a routine Dr. appointment. I had been having some trouble with my breathing since I had Covid after taking grampa on a road trip to Saskatchewan. (If you don't know we took my dad to his home town this summer to lay him to rest) I'm not sure if the Covid was a punishment or just the reason to make things bad enough to find the cancer- either way it's obviously grampa's fault- we still like to blame him for things, keeps the memories alive.) At one point I even went deaf in one ear- in hind sight it was actually pretty bad but I have a bad habit of under reacting when things are actually serious and over reacting when they aren't- we will get to the Port later. So, by the time I saw my Dr. I actually almost couldn't breathe out of my nose-oops. She had a look in my throat and that is when her 'outloud' face showed and I heard the words escape "you have a mass". I actually didn't panic, I'm not sure why... and the flurry of activity that would be the next few weeks was set in motion.
CT scan and results
I was next sent for an urgent CT scan... they were actually calling me by the time I got home. I ever so politely chose Thursday instead of Wednesday because I had to work on Wednesday. I made Jeri take me and we did stop at the look out to take a photo of us for my funeral so I guess I did start to entertain the idea that maybe something was indeed wrong. By now I wasn't able to sleep thru the night. I also have sleep apnea (although my oncologist feels like maybe that was just the start of oscar all along) so if I can breathe thru my nose, I can't use my machine and then breathing actually doesn't work- which is a problem for sustaining life... I hear from my Dr. (Annie, who you should also know is an amazing sweet kind Dr and I'm very lucky to have her looking out for me) She had the results of the first scan that actually don't say much but maybe I have some thickening in my sinuses and it may be dental related and that maybe I see the dentist (which I'm over due to see but honestly who is going to the dentist when they can't breathe? Not me anyway) I spend the day thinking my teeth are rotting out of my head and that I'm just gross... I wasn't sure if this was worse than having cancer... But then as I was leaving work my phone was ringing again and as soon as I saw her her name flash on my screen I think I started to cry or panic at least. "There was two scans and the second one just got resulted". Me: "so we are back to having Cancer?"... we all know they answer to that... I cried and tried to take in the information she was telling me. Looking at my husband who was waiting to pick me up. Knowing that he could see me crying but not wanting to walk into the truck to derail his life or to make this news real or worse- to have to say it outloud.
Biopsy
I am told to be at the ENT office at 9:00 on Tuesday. This is the Tuesday the 15, 2024. The day after thanksgiving, so the first day the office is open since my phone call on Friday night.
I would be remiss if I didn't mention how Jeri and I spent most of the weekend going back and forth "bargaining" that this wasn't somehow cancer and/or being very dark (and we thought quite hysterically funny) about the possibility of it being cancer. I didn't manage to go to work(because I will admit that there was some circle the drain moments here) but I did make her 2 pumpkin pies and 2 batches of soft white buns for her thanksgiving dinner- nobody (except Jeri) appreciated me offering up my recipe 'just in case' for next year.
I've had almost no sleep and I know what the word biopsy means so I'm obviously pretty scared. At the last second I opt to go into the room alone, feeling I might be braver somehow without my husband holding my hand. I wouldn't call myself brave, but I do think it was the right decision. The Dr was also very lovely, but there isn't really a way to sugar coat having a "punch" biopsy from the back of your throat. It consists of him spraying something really gross up your nose that trickles down the back of your throat (but actually I could breathe thru my nose for the fist time in a week, so I didn't mind) He had a good roam around there with his tiny camera. Then I was moved to the 'treatment' room where I was given 1000 needles in my throat (it might have only been about 3, I'm pretty sure I was blacking out at this point) then the biopsies YES PLURAL started! I think there was about 12, you can NEVER unhear the sound of your own skin being cut,(in this case like a hole punch) and this is when I'm so glad my husband is blissfully unaware in the waiting room. He would punch out a piece of oscar and then have a look and then decide if it was a good chunk of not and then put it in the container if it made the cut. I also got to personally walk my biopsy chunks to the pathologist at LGH (Lions Gate Hospital) that was also a fun little treat.
Cancer
Thursday,October 17, 2024 My phone rings in the afternoon, again flashing my Dr. name across the screen. I take a deep breath, already knowing what she will say. It is cancer, lymphoma, the biopsy has confirmed this. I reiterate how lucky I know I am. (I know that sounds weird, but I really have been blessed, it's not even been 2 weeks and I already have a diagnosis! Everyone had taken excellent care of me and I feel completely surrounded by love and care.) I tell her that I realize that this will be a test and a lesson for me and that I must surrender to those around me and let them care for me. Oof thats easier to say that to do.... but I'm a work in progress.
Here is where Oscar comes in. We need a name and almost imediately oscar pops into my head (I mean he's litterally in my throat, so I guess it's not that far to get to my head!) but that's the name. I think briefly about Oscar the grouch and maybe that isn't the best name because that would make me a garbage can... but I can change into a majestic recycle bin, just watch! So with a cancer diagnosis Oscar is born.
Oncology
Monday October 21, 2024 I have my first oncology appointment at BBCA (BC Cancer Agency). They called me on friday to book the appointment saying I would have to have another CT scan that weekend and to be there at 8 am. I wobble when we park in patient parking and I wobble again when I'm filling out the forms in the office and they are asking questions about "does someone know my wishes in the event of...." I'm all about advanced care planning, but I will admit it's much easier when it's someone else wishes you are talking about... and for the record I did have to clarify with my husband what exactly my 'wishes' were even though I have, an have had for years, a list of activities we won't be taking part in: thickened water, feeding tubes if their only purpose is to prolong the inevitable... My oncologist is lovely and she is very optimistic and assures me that there is nothing below the diaphragm (which I'll admit I'm not sure why that was a good thing, but it sounded like it was so I went along with it). She laid out the treatment plan- 6 months 1 time a month 2 doses of Bendamustine and 1 dose of Rituximab. Easy peasy. She wants to start next week. This is where I ask for a port- and if you are a chemo nurse, you are welcome xo
PET scan
Wednesday October 23, 2024while I originally had my scan scheduled in Victoria, where I was going to have a lovely holiday with my friend Jeri courtesy of BBCA my oncologist felt it was, again, more urgent for me to breathe, and had it rescheduled for 2 days after I saw her in Vancouver. Which gave me the opportunity to see my long lost friend Joe and that was ever so good for my heart. If I had doubts about the port those were shut down while they tired to dig in my hand and wrist and arm for a vein to put the radio active dye into me.... It took about 25 minutes and luckily the person after me had cancelled their scan or it would have caused the whole day to go sideways for them. I still have the bruises and it's almost 2 weeks ago (as I'm writing this)
Elbow cancer...you can't make this shit up
After taking the initial weekend off I did manage to go back to work for a few days in there and I have to say I'm sure glad I did. Some of you might not even know that I gave up my 30 year career and RMT licence last year. That was a big one and I actually had a hard time saying it out loud too so I kind of let it just slip away without fan fair. Do I miss is? Sure, sort of... not really. I mean RMT or not if I all the sudden got a burning urge to give someone a massage there would be no shortage of people! I'm working as Nursing Unit Assistant in the Emergency department and I love it. I love the job, I love the atmosphere and mostly I love the people I get to work with. Plus I feel like I can still offer a bit of what I did with massage some love and care in sometimes hard situations. Also cookies(these are my "don't forget me cookies").. I can bring cookies to work anytime I like.Those beautiful people sure made me feel loved and appreciated in those days I came into work and I will not forget any of their kindness... Anyway I digress.
On my last day of work I have a phone consult with my oncologist. She again is upbeat so I don't panic. She assured me that we are going to go ahead with the treatment as planned even though there is one spot that is a little brighter than they would like on the PET scan- which could possibly mean the cancer is aggressive in that area, but we will just scan a bit sooner into treatment to make sure. "It was from the area that was biopsied and he was SO thorough and none of the biopsies came back aggressive" -Oh I remember how thorough he was! She goes on to explain that radiation isn't an option because the cancer is in more areas than the throat which are: both sides of my neck, my right axilla and my right elbow. She does qualify this by saying "I mean you do have lymph nodes in your elbow" like it's a first for her to diagnose someone with elbow cancer as well. Oh and the nasopharyngeal tumour (Oscar) is an almost complete occlusion (blockage of my nose I guess because I can swallow) and is 6.7 cm - no wonder I can't breathe! So Oscar has some friends.....
Port Day
Tuesday October 29, 2024 Port Day.I'm not sure how Jeri got the short straw to take me for this one... but she did. This is a day procedure with "conscious sedation" I've had that before, twice and there is nothing "conscious" about it, so I, mistakenly, am relatively calm about it- I mean I'm a chicken don't get me wrong, but I can get in the car without being sedated. They take me into the day surgery area and the nurse doesn't even fight with my bad veins she calls the 'expert' and sends me down for them to start the IV. I get the pre procedure antibiotics, the Dr. comes and talks to me about the procedure. The nurse shows me what they are going to stuff inside me- why do they do that? (I mean I know informed consent and all that but I would have been happy to be un informed consented) I want to throw up and I can't un see it or stop imagining this tube and giant plastic thing inside me! I hear them briefly mention my sleep apnea and about a consult they have to do, but don't pay attention. The procedure starts. First they make me turn my head all the way to the left, then they cover my body and face with drapes, great, lets add claustrophobia to the mix. Then he says to give me the sedation. Fantastic! (I'm not a drug person but they have there time and place and it's now!)I remember this part! Soon I will be sleeping and I won't care that he's about to start jamming needles into my chest or that I can't see anything. Ah but here is where Oscar, and sleep apnea scupper me!! The "consult" I heard them talking about is likely to see how much "sedation" they actually can give me.... it's not much because there is no anesthetist in the room- and nobody wants to have to intubate someone with sleep apnea and an almost 7 cm tumour in their throat! The sedation is only just enough to heighten my panic, NOT make me unconscious like I was counting on. I start to cry when he puts the first need in and he's ready to quit. "We can't do this! She needs to go to VGH!" I try to calm down I take some deep breaths and tell him I'm fine. "This isn't meant to be a torture chamber!"- I mean it sounds nice but he was being a bit condescending and mean if I'm honest. Time to put my big girl panties on. "It's just a lot. 3 weeks ago I didn't even have cancer and I'm having this procedure and starting chemo tomorrow. I can't see what you are doing and I'm scared. It's ok, I can breath through this, but I'm going to be scared". He continues and at least tells me when he's going to stick another needle into my chest. (these needles are the freezing) He doesn't actually ask if I'm numb he just starts the procedure. I'm wincing at the sharps- I can feel them although I know not to the extent I would if I didn't have any freezing. By the third stitch he says "you shouldn't be able to feel this" I want to say something mean back but I'm focusing on breathing and counting. If I count to 1000 maybe this will be over by then... They get excited about a missing suture- I don't think they ever found it and I'm trying not to imagine I have a whole lost needle inside me, but if I'm honest I'm still worried about it because... have you met me? At least the recovery nurse was lovely and she gave me some good drugs, which I took because I heard grampa's voice in my head saying : "never say no if they offer you good drugs in the hospital!" I've never been so happy to see Jeri and drive away from a hospital in my life. 0/10 do not recommend, but I have the port so I guess we have to have some gratitude. It really hurts by the time I get home and I'm surprised and then scared again because nobody said it would hurt. Thankfully I have some good drugs at home and I take them and manage to get some sleep... tomorrow is a big day!
This is a before and after photo! I don't look very pretty in the second one....
Chemo
Wednesday, October 30, 2024. First chemo day. Jeri has also pulled the short straw for this adventure, but at least we are getting to have a sleep over in the city! Chemo is the afternoon then again in the morning so it doesn't really make sense to drive home. We arrive at BCCA and again everyone is so lovely. They check us in and we meet our nurse "Maxine" she is lovely and thinks we are fun. We've brought her cookies so obviously she will be extra nice to me. She is going to use my port! OH SWEET JESUS we have to touch that thing!! I'm trying not to throw up and I KNOW I'm embarrassing Jeri but it's SO GROSS. She gets it the chemo started and it's not bad, except I can see it dangling out of my chest. Everything goes pretty smoothly, I'm not sure what I was expecting but it was all very civilized, except the part where you can't share a bathroom and have to flush the toilet twice with the seat down! Makes you remember how toxic chemo is.... Anyway we cruise through day 1, even do a little shopping after, but it was raining and we were hungry so we head back to the hotel to order room service and watch halmark christmast movies! Yes we realise that we ate at "old people" time
Day two is a bit trickier because they are giving the second drug and that one can have a severe allergic reaction. They give me a lot of benadryl which I'm worried that I will be a crazy person from. Half way thru the infusion I notice my throat is itchy and then my ears... "I don't want to alarm anyone, but my throat is a bit itchy" they don't bump up the infusion and then say if it doesn't go away that they will have to stop it. Now listen, I've been more allergic to cats and dogs than this and this is 1 of the 2 drugs they are giving me... not taking it is NOT going to be an option... I pretend my eyes aren't itching now too and have a little chat with myself. . I tell myself to knock if off... I must listen because the allergic reaction stops and we are able to continue without any more nonsense! I've made it through my first found of Chemo! Yay me... and I'm not sure if it's the Dex (steroid they give you with Chemo) or if it's the chemo already working but I can actually breathe! Like I don't have to have a bath, a cup of tea and massage my face and neck and breathe in essential oils and then lay my head ever so carefully on my pillow to be able to breathe- I can even roll onto my left side-unheard of last week!
Post chemo
I wasn't really sure what to expect post chemo. I've been told that many people "tolerate" this one really well. I envisioned either being 100% fine and feeling bad for taking time off work to recover or laying on my bathroom floor hugging the toilet bowl for days- you will notice I can be a bit extreme. What I did experience was somewhere in the middle. I mean I've likely lived thru worse hang overs in my day- but if we are being honest they don't hand out the good anti nausea drugs for a hang over and they do for Cancer- so it's likely not a fair comparison.
Nurse Jeri got a much deserved break from me the weekend after my chemo and my friend Lena showed up to (read bossy) care for me. Ben had also taken the weekend off so I was very well attended to- even if I spent most of Saturday sleeping (Lena says also snoring, but she isn't always a reliable witness).
We are at 1 week post Chemo now and I still don't feel fabulous, but mostly just tired. It's a little like being pregnant again- you have to check in before you eat something because your body might violently reject it... Like yesterday's menu was turkey meatballs (thanks mom) and pickles. I do have to say that on Saturday when I woke up from nap #2 (there was 3 in total that day and I am NOT a day sleeper!) I was dreaming about crusty sourdough bread and soup and literally by magic Teena had delivered that (and other yummy treats) while I was sleeping- it was so delicious, thank you!
Sunday was a bit better and I actually got to visit a bit and got this lovely photo from some friends at work. It literally made my day that they took the time to create this magic for me! Thanks you.(I don't have all your contact info so if you are in this photo and don't want it on here let me know and I will take it down! It was just to cute not to share, but I totally understand if it's not your comfort zone!)
My days now consist of cycling thru my nighttime pyjamas and daytime pyjamas- I mean it's kinda of the dream isn't it... elastic waist bands for days!
Holistic Nursing
Holistic Nursing is defined as “all nursing practice that has healing the whole person as its goal”. I would describe it a bit more like a magical wizard/healer/teacher that swoops in and marries the medical knowledge of what ever specialty they have (in my case chemo nurse) with a bit of therapist/angel/hokey pokey healer/good friend that had the ability to peek into your soul and make you admit all the icky stuff and then gets you to figure out where that came from and gets you to talk yourself out of it. She good, if not a bit relentless. She's armed with all the lines: "would you talk to your best friend like that?" "What would 52 year old Nancy like to tell 16 year old Nancy", "what would healthy 90 year old Nancy tell 52 year old Nancy". The holistic nursing isn't just about the cancer. It's about the person with Cancer, the whole physical, mental and spiritual person with Cancer. And like most things that come and bite us in the ass as adults it's about that inner child that's still looking for acceptance, mostly from themselves....
I believe whole heartedly that things happen for a reason. I believe that even shitty things always comes with a gift. I am overwhelmed by the gifts actually and I'm not sure how to even begin to thank you all for the things you have given me... But I know that the biggest gift at the end of this adventure will be the work I do during it. Because while I know that I will never be cancer free, I don't really understand that part yet but Non Hodgkins Lymphoma isn't curable, but very treatable (yes I guess that means I get to pull the C card for the rest of my life.... Examples may include: Me: Lets go have a drink. You: I can't today, sorry. Me: (insert sad eyes) but I have cancer. You and me: clinking glasses.... Just saying, it might happen!) And that 'work' my friends is to emerge physically and emotionally healthy at the end of my treatment. We will think of it as my post menopausal transformation. I'm firmly planted in my, (to quote Dr. Mary Claire Haver) "I don't give a shit anymore phase. I'm in the take me or leave me, my filter is gone and I don't care what other people think phase." I've done it before... When I was 25 I just decided one day that I had had enough of being shy. I packed my car, moved to a heli skiing resort to start a job where I literally knew 1 person. Those who know me well know that I worked there for 8 years, met my husband there and Jackson was born there... What you don't know is that I showed up vowing to just "pretend" not to be shy (I was cripplingly shy when I was younger and lots of people thought I was a snob because of it). My back up plan- for when nobody liked me and everybody laughed at me and said I was stupid to my face was to pack my car in the middle of the night and run away! It sounds so ridiculous now, but it worked. People believed I wasn't shy and shockingly I made friends.
I have done a lot of the hard work in my life and I'm not going to rehash with you the traumatic things that happened in childhood or the shitty adult choices I've made. We can all look back at things and cringe and/or wish things were different- that's not unique to me. I have become the person I am today because of the culmination of all the experiences I've had, good or bad and I like who I am today (she types, almost believing it.) So here's the accountability piece: Selfish, self centred, narcissistic and lazy. These are my 'shame' words, and if we are honest we could throw in fat and ugly too.... I can see your face. It will likely be the same face that my friend showed me when I admitted that to her, and it's likely not the way you would describe me. It should not be the words I use to describe myself either and this my friends is the crux of my cancer. I know where all those words came from I can probably pin point the moments I started packing them around and calling them my own, and honestly that little girl was to young and too little for such big words and they are heavy and actually not serving me well so it's time to put them down and get some new ones. I've tried to write this post for awhile because I'm not sure if I should share this dark corner of myself with the world, but I also know it's the best way for me to let it go because if I don't actually tell you I don't actually have to admit that it's there and then there's no accountability and then we pretend for a while and slip back into the pattern of believing the bullshit we tell ourselves.
When talking about taking time off to do treatment the nurse asked me how I felt about it. "Selfish" and as I write it again it sounds as ridiculous as packing my car in the middle of the night and running away... I deserve to have time to heal and get healthy.I deserve to take up space in the world and I definitely deserved to be loved as much as I love you all. I will reiterate again why I'm telling you this... Accountability. I don't need you to tell me I'm not all those things. I have tendencies to all those traits, but I hope and I try my best to be the opposite of those things every day. And just to keep things fun an interesting I'm going to take you along for the ride. Like I'm going to be your inner voice- cheering you on telling you the things you should tell yourself (I won't tell you who but one friend has already said she is going to fire that nurse when I told her how utterly amazing she is! ) Radical love my friends... That's the way out and I'm going to give you some of it too so you don't have to get cancer xo
p.s. I pulled off one of my steri strips last night! (I would share the video but I need to upgrade to do that, so you will have to take my word for it) BRAVEST girl in the world!!!
Cancer Gifts!
First off look at this sweatshirt that I was gifted... I love it and it's 100% accurate. This post might even be tougher than the accountability post because now I have to put my money where my mouth is. I did mention in one of my post being overwhelmed by the gifts. I also want to back track a bit to when Annie called with the actual cancer results and she said to me: "Nancy, you put so much love into this world, it's time that you let people love you" (see I do listen!) which actually set the whole ball in motion about the self love piece. Years ago when I was doing a massage course and we were doing an exercise with a partner (Sherry that was with you!) It was an exercise about energy fields. We were meant to sit across from each other, not touch but send each other love or energy or something to that effect. But the real part of the exercise was that we were meant to receive it too...I had an epiphany that day while I sat there (I will admit I might have rolled my eyes a bit with the hokey pokey even though I've always been able to feel it and have been intuitive my whole life- I've fought it hard!) So while I sat there trying to send my good friend all the love I had I realized in that moment that she also loved and cared about me just as much. I started to entertain the notion that I mattered...
I was joking the other day after a friend had dropped off a gift basket to me and sent a photo of it to my friend and titled it: Cancer 10/10 do recommend for the gifts. (because it's easier to joke than to accept that these things are all given with love- did I mention I'm a work in progress...) To say I've been overwhelmed is an understatement... I have a page in my journal of things that people have brought to me: food, flowers, blankets, pjs, clothes, crafts, art, books, and that's doesn't even count the expense some of you have made to come visit me from the Island or the city... I'm always left humbled by your care. Yesterday Jeri messaged me and said: " I have a gift from your work family and it might make you a bit emotional" (so obviously I jumped in my car and went straight to her house because I'm both impatient and curious!) I open the box to see a lovely outfit from Lulu lemon- which would be amazing in itself, but also a card and a very large cash donation. I burst into tears and slammed the box shut (if I'm honest I think she started to cry too, but don't tell her I told you!) Of course she told me the actual amount and I just cried harder and I will admit I didn't know what to do....because my instinct is to say "oops you made a mistake, this can't be for me." But then I remembered how I was going to love myself and be open to all the love- and it's A LOT! So I sat with those uncomfortable feelings and talked to myself like I would my BFF-"How amazing is it that so many people love you and want to make your life easier. How lucky are you that you must have touched their life in a way that they want to share with you. You are loved and cared for." oof... still a lot if I'm honest. I sat with that card and list (I know some of you didn't get the chance to sign the card and Jeri made sure I had a list of those who didn't) and I read the comments and names, I took out my journal and I looked through the list of people and visits and thoughtful gifts and sent you all an emotional thank you in my mind. I am beyond grateful for the love and care you are all showing me, and I'm trying my hardest to model gratitude and acceptance to my kids! I wish there was another expression for Thank-you that was reserved for these special moments in your life. My friend told me (a fellow cancer survivor) "you won't be the same coming out of this as you went into it." that couldn't be more true. I love you all my friends xo
Hair
So I did a thing today. I've been planning it for a bit but didn't tell anyone because I needed to get my head around it. I think I told you that I wasn't going to lose my hair, and maybe I still won't lose all of it- but it is listed as the potential side effects of one of the drugs I'm taking and after cleaning what I can only describe as a small rodent out of my brush the other day, I knew the inevitable was likely happening. I've had long hair my whole adult life (with the exception of one haircut that I cried after getting). So today I took myself to the hairdresser and got a lot cut off. My hope is that I will at least be able to look normal for Christmas, which was obviously not going to be possible with my long hair. Brave? No... let's be very clear this was 100% me wanting to be in control and bossy- if my hair is going to fall out, it's going to be on my terms. I braced myself for the tears, I felt all the feels. I picked a, new to me, hairdresser because I needed just the right energy to be able to say goodbye to that little piece of myself and I have to say I sure did pick the right angel to do it! She's the daughter of a friend and she's just one of the loveliest souls out there. She not only made me feel special and cared for but I actually like the haircut- which was not my expectation! I expected to walk out and burst into tears, I did not. I had a spring in my step and calm in my heart.
Chemo round two
We have round two of chemo in the bag. Not going to lie I feel pretty rough. I figured I would this time around because the first time I went into it feeling really terrible so the bar was pretty low. I felt fabulous on Tuesday so I knew the poison would have something to say about that. I was prepared going in though I've decorated my whole house for Christmas- like every room has some festive in it and this is the view in my bedroom- hard to feel too sorry for yourself when you get to look at this(but don't worry I can still manage to throw out a "poor me") I have all the drugs to keep the vomit comet at bay and I will take them all!
I was able to do my chemo in Squamish this time which was really nice although a bit of a full circle moment. Some of you know that I used to serve the chemo tea- in fact I think I might have been one of the originals that started that service back in the day! So it was very strange to be on the receiving end of that and sitting in one of those chairs instead of serving (of course I still brought cookies- on my first day, I felt too rough this morning to make cookies so I came empty handed and that was ok) Although BC cancer was amazing it was really nice to get treatment from familiar faces and people I know and care about. They even called me "Queen Nancy" so obviously I showed up in a tiara today- sorry forgot to take a photo. Thanks for taking great care of me ladies and Dr. Piper and, to the people that popped in to say hello. Next up colonoscopy- because who wouldn't book one of those the week after chemo....
colonoscopy!
So silver lining is that I'm pretty sure I willed myself to get over the nausea just in time for the colonoscopy because I feel pretty good today. Ben is out of town so Jeri got to drive me to my procedure this morning. We agreed she could just drop me at the front door and go home and start her Christmas decorating! On the way there she said: "Are you sure you don't want me to come in and wait with you?" Me:" I'm not going to die of a colonoscopy. That is NOT my end game. I'm prepared to die in a lot of unromantic ways, but this isn't one of them." Jeri: "whoa! Who said anything about dying?" Me: "well why else would you need to come in and wait with me if not for fear that I'm dying?" Jeri: "um to keep you company, but never mind weirdo"- there's my dramatic side showing again.
Now let me explain my tolerance for narcotics. It is pretty much nil (thanks grampa! I get this from my dad if you hadn't guessed).... like I can't take a gravol without being unconscious so give me what ever they give you to make you have a nice little sleepy sleep and I'm lights out- this is the conscious sedation I needed when I had my port put in! The other thing narcotics does for me is that I'm REALLY stupid and my already thin filter is gone like GONE. So while Jeri was walking me to the car and I saw my co workers that I wanted to say hi to maybe that wasn't the best idea and I'm really sorry to the WHOLE emergency department that I might have "overshared" with... but such is life. The good news is that everything is good and healthy in there and I don't have to play that game for at least another 10 years! A few pearls of wisdom that I will pass onto you is a friend told me before I drank the magic juice (colonoscopy prep) don't be more than 12 feet from the toilet. This is excellent advise and I might have not taken it. My couch is more than 12 feet from the toilet- don't ask me how I know, also again I apologise for the 'overshare' today :) (the couch was not harmed in the making of this episode) I also don't completely recommend a colonoscopy after chemo the double whammy of nausea and running to the toilet was not enjoyable last night. Again thank you to all the lovely people that took such great care of me today. While I see you on a daily basis take care of your patients with grace and compassion, precious few get to walk into a hospital for a treatment or procedure and see so many people that care about them in the way you all cared for me today, even on this shittiest of days I truly felt loved and cared for.
Peanut Butter
This might come as a surprise but I might have tried to do too many things around Christmas. I thought I was being reasonable, but my "reasonable" can be a bit much- if it's something I like to do- I still have a dirty laundry room that I've been meaning to organize for 2 years, but many Christmas cookies got baked this year. I was having a bit of a 'huff' the other day as normally I would do my Christmas baking until the point of exhaustion and I did this year too, it's just that I would get exhausted after 1 batch of cookies and have to take a rest and I found that very frustrating. I'm really good at hyper focusing but apparently not so good when I don't have enough energy. A friend explained it to me in the best way possible. She said: Your body is fighting a war in there and if you use up all your peanut butter doing other things, you won't have enough peanut butter to feed the soldiers and they can't do their job. So that's my new saying- or my families when I'm doing too much: "don't forget about the peanut butter" and I will admit it feels a bit less like being told what to do (slow down, take it easy) and a bit more like a gentle reminder that the stubborn me can listen too. Remember we are still a work in progress.
Christmas and Chemo
Truth be told I don't like Christmas. I mean I LOVE the lead up to Christmas: the decorating, the baking cookies, finding gifts- I even like wrapping them thanks to installing the "gift wrapping" table in my room (it's just a foldable table I put at the end of my bed and I can go into my room anytime I like to hide, wrap gifts, sometime I take a mimosa in there and stay for hours, nobody bugs me-you're welcome) I always find the Christmas a bit of a let down. All the planning to plow though the meal or gifts and the pressure of making it right and not forgetting anything... I thought this year would be different. It was just going to be us and my mom and we were going to have a no stress cosy little Christmas. Around the 23th I started to feel sad that we weren't going to have more people around the table- my nephews are away and I was missing them, we decided to not have our big family Christmas with my cousin because of the amount of people and dogs and it all started to feel a little less magical, or maybe that's just how I feel every Christmas.
I was determined to make Christmas day one to remember, and I guess I was successful! We were going to wake up and have a mimosa, make eggs benny and open our gifts, go for a family walk play games and enjoy each other's company. I was going to be thankful because before I got to go on this little cancer holiday I was actually scheduled to work Christmas day- so this was a bonus. My heart had other plans. I knew as soon as I woke up, but I went and got my apple watch to confirm and have proof- I have this weird thing about not believing myself. Afib, thanks grampa- this is a little genetic treat he passed on to me and a bit of me has to laugh because if this were my dad he would NOT be going to to the hospital he would have shoved his head into a rain barrel and tried to shock himself into normal rhythm- I will admit I thought about it. I do have a fancy "pill in the pocket" which is meant to allow me to take it and convert,but seeing as I had never taken it before I had to go to emergency to take it for the first time. ( I guess it's a good thing because I might have had a wee tiny reaction to it- always an adventure) So off Ben and I went to get me straightened up. I did grab some treats on my way out the door, obviously, I couldn't show up empty handed on Christmas day!
I converted in two hours and was getting ready to pack up and head for the hills confident I could still save Christmas when the dizziness hit, then the funny pins and needles on my tongue, then the wave of nausea and I was right back in that hospital bed in the fetal position, this time crying, because I don't like people seeing me feel terrible. Turns out its a rare side effect of the drug, a few more anti nausea drugs and I was free. I was free with a price though, I was exhausted, I still didn't feel well and it won me the "lead couch foreman" position for the rest of the day. At least I could still physically be with my family but contributing in a meaningful way was going to be out of the question. I felt like a little kid that was stamping my feet and having a temper tantrum... but I guess this is another lesson I have to learn. The world will go on if I need to take a break and other people are actually capable on doing things. Dinner was delicious despite me not actually touching a thing, thanks mom and Ben xo
Chemo was the 26th and 27th of December and I'm officially half way thru my treatment! I decided I wasn't going to take that negative attitude about things getting harder each time in with me.. I mean I do have my dad's DNA after all so I made it thru the vomit comet in 2 days with minimal drugs- and I will be honest they switched my drugs up and after reading the side effects of the new drug I was too scared to take it so I'm almost 100% sure I made it thru because I just willed myself not to need it- I am a chicken! There still is fun little surprises that await me putting a new spin on the weird things that are happening to my body- like is the hip and leg pain from sleeping for 12 hours a day or is that a side effect of the chemo? I actually find myself dreading that the most because it seems to hit after the nausea subsides and at least there is drugs for the nausea- this is like wanting to crawl out of your own skin- ick. Also I have a few stitches coming out of my port that they wouldn't pluck out at BCC and they poke me and hurt so I guess we have to deal with that.
Half Way There Scan!
Sunday I had my half way thru treatment CT scan- this was to make sure the treatment was working.(I mean we already know it is because I can breathe) I was diligent and brought home made cookies to my scan... have I told you that I bring cookies to EVERY appointment now- because I didn't with the port so I'm consistent now. I even brought cookies to my cardiologist appointment the other day, which seems wrong on so many levels but the superstitious me (I think that's actually a sign of OCD) wasn't taking any chances!
Today while I was out with two friends I got a call from the Dr with the results of my scan and in true Arneson style (impatient and overachiever-I guess we can give grampa some credit for this too, although have you met my mom those traits come from her too!) it showed no evidence of cancer left in my body. The original tumour is all but gone (it was worded funny and I can't see the results myself yet but it actually says something like it appears to have resolved or something weird) the lymph nodes in my armpit and neck and abdomen are all back to normal. I guess technically there could still be that elbow cancer lurking around because the CT was neck, abdomen and pelvis so it wouldn't see my elbow, but I'm sure that's gone too. My first question is : "does that mean I"m done with chemo early?" to which he said he would check with my oncologist but assumes I still have to finish the course of treatment.
There was a lot of emotions after that phone call. I actually didn't cry, teared up but didn't cry. Like I said I was with two friends and watching them burst into tears and have a very visceral reaction to that news was overwhelming. Knowing that you are so loved and also caused so much worry in people is simultaneously amazing and heart breaking. I'm not sure I've completely processed it and I went right into texting my family to let them know. Obviously I"m happy and relieved, but there's a bit of sadness there too. How will I get thru those last treatments knowing there isn't really any cancer left? I know there still can be non detectable cancer cells that the chemo will attack but I visualise it going to my tumour and the swollen lymph nodes and they aren't there anymore. What happens to my 6 month journey... I still have work to do and the cancer was holding me accountable and now it's just up to me to finish this path, I don't have a cancer crutch anymore. I had a plan and and end date and while I did say that I was sure the cancer was gone and then would tell me I don't have to do anymore treatment I'm not sure I am actually truly ready for that yet- which sounds crazy and ridiculous I know but I am both those things. I was going to come and write the other day about how I "intentionally" rested the other day and how much more effective it was then to sort of feel better and then gas light myself into doing too much and now my first instinct was "I shouldn't be so tired, I don't have cancer"- ah.. but I did and maybe still do and I still need to get my strength back...For tonight I will hug my kids and my husband a bit longer and be thankful that we have modern medicine that worked amazingly well for me. I will reiterate again: I am so incredibly lucky!
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