difficult, but it can be done

I start chemo one week from today and it’s really all I think about right now. I am nervous. Who wouldn’t be? I don’t know what it’s going to do to me, how it’s going to change me.

The fact that I actually am a cancer patient…holy shitballs…it’s taken me some time to digest and accept, but I have. So, yes, I am a cancer patient and other cancer patients are my peep . But it still feels surreal. For one, people keep telling me how great I look. It’s true, right now I look more healthy than I have in at least a year or so. It’s because they’ve cut the cancer tumours out of me. It’s no longer slowly and very secretly sucking the life out of me – literally. My colour is better, the circles under my eyes are gone, my eyes are brighter. Even my husband is regularly commenting on how healthy I look right now because he can’t even believe it and he sees me every day.

But yeah, I’m about to start chemo. So I have a feeling in a few weeks people might not be telling me how great I look. But maybe they will! But the word is, is that it’s going to take toll on my body and on my brain. I’m crossing my fingers that the side effects won’t hit me too badly. It’s weird because my doctors have said, “only a small percentage of people have the worst side effects” but at the same time tell me that “treatment is going to be very difficult – but it can be done” and they always add that I can get through it. They just always reiterate it will be a very hard journey for me. I saw my surgeon on Monday and he followed this statement with, “Well, you are up for a fight though, right?” Of course I am, but I’m hoping I’ll hit somewhere in the middle when it comes to side effects. Maybe it’s all mind over matter. maybe if I tell myself I am going to handle it GREAT, maybe I will. I imagine the chances are good that I’ll feel fatigue, nausea, loss of appetite, dry/sensitive/fragile skin and depression. I’m really hoping I don’t get chemo brain, or at least that I don’t get it too badly. I’ve been doing lots of research on chemo effects and heard all of the stories of how chemo hardly effected some people at all. (Please, please, oh please let that be me) But I’ve also read accounts about how it was the worst thing people have ever experienced. Decca Aitkenhead wrote about her experience in the Guardian, which you can read here. It’s very informative, but in summary she says,

“chemotherapy strips away every last ounce of vitality or volition, until you are left only with the outward appearance of a living person. But you are a hollow husk, empty of all the essential constituents that make a person alive. It is a cruel irony that a drug designed to stop you from dying, makes you feel as if you already have.”

My doctors say I’ll know within the first two weeks (in my first cycle of treatment) what my side effects will be. But then, friends who’ve have had chemo said the side effects didn’t really hit them until the second cycle.

Anyway, it is what it is, right? Can’t stop what’s coming, nope. And yeah, I AM up for a fight. Cancer started this fight but I will be the one who will finish it.

My beautiful and super smart niece sent me a text yesterday and I keep reading it to drill her words into my brain. Part of what she said is, “…take comfort in the fact that this isn’t forever. They’ve already done way more than what could’ve been done had it been discovered later….chemo is just starting, but this is almost over. You’ll beat it and you have a whole slew of people to help you along”

She’s right – she’s right -she’s right. It’s not forever and it will be over soon. So, I am prepping for my chemo so that I don’t let it get the best of me. More on that later though.

 

 

 

 

 

 

I ran out, I didn’t grab no shoes or nothin’ Jesus, I just ran for my life

How are you?

Everyone asks me this and I sincerely don’t know how to answer it. Even Andy asks me every day once he’s arrived at work. He sends me a text and asks if I am awake and up, he checks in on me to make sure I’m ok. My sincere answer is always that I’m good. Because I am. I really am totes fine. I’m walking around, doing stuff and I’m good.

But in reality I have no idea how to answer this when I am asked. For the most part I am truly alright and in good spirits. It’s like, if I don’t laugh, I’ll just cry. So I choose to laugh.

But when I’m alone I find myself randomly getting teary throughout the day and I don’t really know why. I’m not sure what sets it off, if anything. I suppose it’s possible that it’s mostly with feeling overwhelmed at all of this. I also think that maybe I could have some secret reserves in my brain where all of the panic and upset about it all has been stored away. Nice and neat and compact, where it can stay. I’m mostly just focusing on getting better, I just don’t have the time or the energy to give those feelings. I say might because I’m not even sure I have them. But maybe I do. And maybe sometimes it just leaks out and so I cry a bit for no reason, but also for the obvious reasons.

God bless you Sweet Brown. Ain’t nobody got time for that indeed.

cool title bro

I start chemotherapy on 23 Jan. I’ll have 12 weeks of treatment – four cycles, each lasting for 3 weeks. The first day of the cycle the chemo will be done intravenously, and that takes 8 hours for it to be administered. One week later, I go back and I get chemo in tablet form. After that it’s two weeks of nothing and then it starts all over again. Once I finish my 12 weeks, then I’ll start radiotherapy. But I’m not sure what that part of my treatment looks like yet.

When I first met my oncologist last Monday I was really frightened.
I arrived at the clinic alone, Andy was on his way from work and I’d just gotten there a bit earlier than he did. There were quite a few people there who were very obviously chemo patients. One woman really struck me. She had no eyebrows and just a few patches of hair. But it was the fact that she was pregnant – like at least 8 months – that got me. I kept staring at her wondering how the heck they administer her treatment without harming the baby. Anyway, I was sitting there looking around this very busy clinic filled with cancer patients, TV screens on the walls with things like, “understanding skin cancer” and “have you noticed a lump in your neck?” along with advertising their services. I became a bit overwhelmed and couldn’t help but think, “what am I doing here, omg I can’t believe I am here”

I’ve fully accepted my situation, but I still get overwhelmed with it at times. It’s just so weird that this is actually my life right now. Andy showed up and I instantly became very tearful because I was afraid. I was scared of what I’d be told. How long would my treatment be? What will my side effects be? How successful did they think it would be? Looking at everyone around me in the waiting area just knocked me on the floor – I just imagined myself in their shoes in just a matter of weeks. Soon I would show up for my treatment looking just like them. Soon someone would come in, look at me and feel frightened just like I did. I may have accepted my situation, but it doesn’t mean I don’t become really frightened and/or upset at times. I haven’t accepted it with open arms, welcoming it into my life. I’ve greeted it with more of a punch in the nose, WTF are you doing here, and I’m screaming at it to get out.

But when I finally met my oncologist, Dr Dionysis Papadatos-Pastos, the first thing he spoke about was my surgery and asked how I was feeling. Then he said, “Well, now that we’ve taken the cancer out of you, we need to give that cancer the smallest possible chance of returning and that’s what this next stage of treatment is for”. Both my lung consultant and my surgeon, have said, “we’ve taken out everything we can see, but based on how your cancer has spread, it’s very likely there’s still cancer in your body. So now we need to kill those cells to prevent them from metastasising and to stop further tumours from developing”

Now I know they are all saying the same thing, but it was hearing those words, “we’ve taken the cancer out of you” which made such a big difference for some reason. I walked out of there 100x lighter on my feet.

They gave me a list of side effects for chemo and they are pretty brutal. I’m really not looking forward to the nausea. That’s one thing I don’t handle well. I can take the pain, I don’t like it and once it’s gone that memory stays with me for awhile, but nausea? UGH Dizziness and nausea are two things I hate and don’t handle well. One good thing is that I guess only a small percentage of people have hair loss as a side effect with the particular chemo I am going to have. So fingers crossed that I won’t be in that small percentage.

For now I’m feeling pretty good. I’m very loopy from all of the meds I am still on – last night I could REALLY feel that. I went to choir practice and did find it a bit difficult to be surrounded by so many people, it was very overwhelming and I didn’t feel like my brain was working right. It was hard to have a conversation because I feel like my head is about 5-10 seconds behind everyone else. It’s taking me slightly longer to process both what’s being said and then how to respond. I mostly just wanted to respond with BLURG. Regardless, at the moment I’m feeling very “I GOT THIS”, so I’m going to hang onto it for awhile.

❤️

Say hi to my Aunt Sandy. Sandy is my dad’s older sister. She died when I was 21. She was one of the very first kidney transplants in the USA, if not the first. She was only about 15-17 years old at the time and this was in the mid-60’s. Medicine and surgery like hers was still very primitive. After her surgery, she developed a staff infection. This meant her wound could not be closed – it had to heal from the inside out. It was incredibly painful and a horror to go through. It left her horribly scarred and made her walk with a limp. She pretty much spent her entire life in physical pain, in hospitals and on loads of medication. She then got arthritis when she was quite young which meant she couldn’t stay in Colorado – the cold weather in the winter months were too painful for her. In her late 30’s to early 40’s she developed cancer, and that’s what eventually took her. Her entire life was permeated with illness and pain, yet she was still fun, beautiful and she did not put up with anyone’s shit. 

I was really close to her, closer to her than my own parents. When I was little, she spoiled me embarrassingly rotten. As I got older, she looked after me in the way that only an aunt can.

Her favourite movie was The Princess Bride and I can still remember how loud she would laugh while she was watching Cheers and MASH. I like to think I got my laugh from her and that I’ve passed this down to both of my nieces. My dad says I laugh like her and I love that. 

She taught me how to pluck my eye brows and put on lipstick. She had to wear wigs because between all of her illnesses and then the dozens of medication she was on all of her life – they pretty much destroyed her looks. But no matter what she was going through, she always took the time to put some effort in and always looked great. With her beehive wigs, false lashes, painted nails, lipstick and wing tipped eyeliner, she was by far the most glamorous person at church every Sunday.

The day she died, the cancer had taken over so much of her frail body, she couldn’t speak and she could hardly move. We had to do everything for her. I sat alone with her and held her hand and cried. I told her all of the things I wanted to tell her. Like how much I looked up to her, I thanked her for looking after me when no one else would, I told her I loved her more than anyone and that I thought she was the bravest person I ever knew. I didn’t know if she could hear me but I told her I hoped she could. I’d been holding her hand and right when I said that she squeezed my hand really hard. I just remember saying thank you to the heavens for that. I curled up next to her and cried my eyes out and asked her to please not leave. But I knew it was inevitable and I knew it was happening that day.

I don’t recall my aunt ever complaining about her life. She had a miserable marriage – her husband was truly a deplorable human being. He never deserved her. She couldn’t have kids, so she ended up adopting a daughter. But I knew she always treated me as if I was her own kiddo. She made sure I knew I was her favourite niece and that I was special. When I was born, she told my parents that I was going to be just like her and look just like her. I dunno, do you see any resemblance? Maybe a lil’ bit 🥰

Anyway, I miss her. It’s been 27 years since she died and I still think of her often. She’s been constantly present since my diagnosis. I wonder what she would say to me? Think she’d be a bit tough on me. I think she’d coddle me a bit and then be all, “ok enough! Time to get out and do something productive”. I know she’d tell me I’ll get though it, and I know she’d be right. I just wish I could talk to her. Anyway, she was really amazing and I really do miss her terribly right now.

I’m a Black Star

It’s been two weeks since my surgery and I think I’m doing pretty good. I have three doctors right now. My main lung consultant, my surgeon and now I officially have an oncologist. Oh, and I also have a nurse, Vicky. She’s pretty much going to be looking after my well-being until all of my treatment is complete. She looks after Andy too. Whew. So much fuss.

How am I? I don’t even know how to answer that question. I feel like I’m walking in a dream/nightmare. Like nothing is real. I don’t know if it’s because of where I find myself right now, or the drugs. Maybe both. I go back and forth daily – usually several times in one day – between feeling positive and then feeling almost crippled with fear. One moment I feel like there is just no way I can NOT beat this. The next I imagine the doctors telling me that more tumours have developed after the chemo and that there isn’t anything else they can do. Then I keep thinking maybe the doctors will call and say they made a mistake, that I’m ok. I’m all over the place.

Yesterday I got to see my X-ray post surgery:

The smaller lung is where they cut out where the cancer originated. You can’t easily see where the other 2-3 areas are. But the lungs are pretty obvious. Next week I see the oncologist and they’ll explain the details behind what the second stage of my treatment will be like. I’m very scared. 

I’m really struggling not to let this define me, but I really don’t think about anything else. The rare moments I find myself vaguely distracted, it doesn’t take long before it smacks me upside the head to remind me of its presence. I don’t want to think about it all of the time, but I can’t ignore it, so I guess I just have ride the waves as they come and go. As much as I don’t want it to define me, it is for now. I have to give it its space. My cancer is me.

I also look at everything and everyone else through this new lens. I think about how much this has completely blindsided me. I look at everyone out and about, wondering what they have creeping around inside of their bodies. I hear someone cough and it makes me do a double turn. I think about all those times I was happy and having fun, without a clue; so oblivious to this creeping death taking over my body. I mean how does that even happen? I don’t know, but it did.

Looking back, I did have signs. But they were all self determined flaws which made it easy to blame myself for. I slowly quit working out. Not because I didn’t want to, I just didn’t have the energy. I was so, so, SO tired. I’d literally fall asleep at work. But I blamed that on my laziness. Over the last year I’ve struggled to focus on even simple tasks. At work I struggled with simple things I needed to do. At home I struggled with the smallest of daily chores. I almost quit my choir. I didn’t feel like I belonged at all. I struggled to focus on things I was doing with them and didn’t know how to tell anyone. I figured all of this was just down to character faults of my own. I was depressed for no good reason. I was just an idiot who couldn’t carry out her job properly, was a lazy slob who couldn’t take care of herself and was a piece of shit person who didn’t belong in this fab group of women who were vastly better than her.

I slowly retreated into myself thinking I just couldn’t do anything right.

My skin started getting funny. I’d developed really horrendous circles under my eyes. I was using three products to try to cover them but nothing worked. My skin started turning this sallow sort of colour. I was using brighteners and all sorts, but I always looked like death. I finally just gave up and then it became rare for me to put on any make up at all. I just felt grey and looked bleary all of the time. I beat myself up over all of this, blamed myself for not taking better care of myself.

The more I’m learning about how cancer slowly sucks the life out of you, the more dots I’ve been able to connect. I really blamed these things on the fact that, if I was just a better, smarter, more self aware person – these things just wouldn’t be happening and I’d look better. It didn’t help that there were times people would get upset with me for dropping the ball. I sort of just took the way they treated me, what they said and even what they didn’t say, as confirmation that I really was just a shit person not worth the effort. 

The biggest sign was my cough. But that didn’t start until Aug 2018. Anyway, my point is, is that it just snuck up on me and now it’s taking over my life. I wish I’d paid more attention to my body and even my brain. The things I was doing or not doing that were uncharacteristic. I don’t know. Maybe there was nothing I could have done. Maybe this is just the hand I was dealt and have to cope. I’d like to say I’ve been through worse – because I’ve been through a lot in life. We all have. Some outside if my control and some within. But I’m not sure – this is all new territory. I know once I get through it I’ll be better for it. My husband reminds me that every challenge we’ve faced together has made us better and stronger, and that this will be no different. I know he’s right. But in this instance – it’s my actual life in the balance. New territory.   

I’m so lucky 🍀

So. Well here I am. I’m 48 years old. I work out pretty regularly, although it’s declined in recent months. I don’t smoke, I hardly drink and I eat pretty well. Ok ok, I could eat less and I also like sugar far too much, but still. So here I am sitting in the hospital just five days after surgery. I’ve had 1/6 of my lower right lung removed along with two lymph nodes. I have lung cancer. It’s stage 3A. Which is early-ish, but it’s already started to spread to other parts of my body. Ten years ago they would’ve told me there was nothing they could do. They’d have said it had spread too far and that the best they could do was manage my pain and prolong whatever limited time I had left. But I’m lucky. With the technology they have today, they feel confident that I have a really good chance of being cured. So they’ve carved everything out of me now. All of my cancer bits are off being tested in a lab to determine the next part of my treatment, which will involve radiotherapy and chemotherapy, carried out simultaneously. Probably for around 6-8 weeks. But first I have to fully heal from all the slicing they’ve just done on me to get the cancer out of me – what they can see anyway. The rest of my treatment is to destroy what they can’t see.

It’s been a whirlwind. I went to my GP on Friday, 30 Nov, because I was sick of this cough. By 3 Dec, I was going through more x-ays, loads of blood tests and an MRI. By 4 Dec, I was aware they were concerned about lung cancer. On Thursday 13 Dec, my doctor, Dr. Neal Navani  confirmed that I definitely had lung cancer.

Those 9 days of uncertainty were awful, terrible and painfully frightening. One moment I’d be saying, “there is no way I have lung cancer! It’s impossible! I don’t smoke! I’m only 48!!”  Then 60 seconds later I’d be crying my heart out and saying, “I’m going to miss Colette’s graduation. I won’t get to be old with you, I won’t ever celebrate another Christmas with you, I’ll never own a puppy again”  and the worst was “I HAVE SO MUCH I WANT TO DO and I’VE WASTED SO MUCH TIME”  I couldn’t sleep, I would have episodes of sleep paralysis over and over again throughout the night. Every day I had tests, tests and more tests. More X-rays, more blood tests, multiple MRIs, a camera stuck down my throat, another tube to pull bits for a biopsy on multiple places in my lungs. I thought I was all finished. Then on Monday 10 Dec, they contacted me and said they needed just one more MRI. I got down there and was told the MRI was only for my brain. I started shaking and my immediate thought was that they’d found cancer and they need to see if it’s been spread into my skull and brain because it’s already spread to other places. I was so upset I couldn’t breathe. But then suddenly I was like, “this is impossible!” Turns out my first instincts were right, that is what that last MRI was for.

I can’t describe what hearing “you have lung cancer” is like. In the background, I heard my husband gasp and say “no” and his voice cracked. I’m not sure what happened in my brain. Everything got fuzzy and I felt very detached from my body. I became very focused on Dr Navani’s face and the conversation on my end became very short and just ‘give me the facts’. Dr Navani went on to tell me, “It’s stage 3A, which is not exactly early, but early-ish. We are confident it’s early enough that we can cure you. But I won’t lie, it’s going to be very hard on you physically, psychologically and emotionally. It’s going to be rough. But we do believe we can cure you.” The next thing out of my mouth was, “ok what do we do next and how soon can we get it done” Dr Navani arranged for me to see a surgeon immediately that same night. And 4 days later, David Lawrence had me on his operating table.

I’ve now been in the hospital for 6 days, I think I can go home tomorrow, 24 Dec, on the 7th day.

I’ve been in loads of pain, which has been hard to manage. It was the reason I was there 2 days longer than anticipated. The worst was the nerves on the right side of my body. It felt like liquid fire coursing through my veins and there was FA I could do. If I moved or breathed, the heat of that searing pain just increased. I had to stand as still as I could, breathe as softly as I could until my meds kicked in. When they finally did, I just passed out. Pain like that, combined with every bit of energy your body all working on healing itself, is more than exhausting. Sometimes I can barely keep my eyes open. I can hardly move. I get dressed and look in the mirror and the entire right side of my body is swollen and misshapen.

But I’m getting through it. This is temporary. And this is only the first hurdle. Next comes the real hard stuff. Yes, I am very afraid. It’s going to destroy my body. I’ll likely lose my hair and become frail. But again, it’s temporary. If this is what I have to do to heal myself, then bring it on. I wanna see Collette graduate in 2020. I have plans to decorate our new flat, I wanna get old with my husband. Someday I want a puppy. I want to go to Oaxaca for Day Of The Dead. I want to go to Hawaii. So I have no choice but to do whatever I can to make myself cancer free. I don’t want to die. I don’t really want to look like Gollum either, who does?! But I don’t want to die even more. I have too many plans.

Lung cancer is one of the worst cancers you can get. It’s usually not detected until it’s too late. It just doesn’t show itself until it’s everywhere. It can sit in your body for years and years before it says hello. I know for a fact I’ve had it at least since 2015 – but that is for later. Survival rates are not good. But I’m so lucky. I’m only 48, far younger than when most people are diagnosed. The cancer itself is not attached to an major organs which made the removal easy. I’m also relatively healthy. I have a chance, not just any old chance though. I have a very high chance of beating this. So I will. I am sure I will come out the other end very beaten up. But that is all temporary. There will be a war but I’m not going down. Sigh. I’m going to have moments like this were I’m all “hell yeah bring it on I’m ready and I got this” but I know there will be times I’m going to be filled with darkness and fear, pain and wondering why me. But I’m just going to have to sit with that when it comes to visit I guess.

It’s weird enough to say “hey I have lung cancer” But it triples the weirdness to say and feel, “hey I have lung cancer and I am soooo lucky”  So Merry Christmas to me. I have loads to be grateful for today.