Finding The Word

Crying has become a part of my everyday life. It is just something that happens and I am almost getting used to it. During my most recent therapy session, my therapist wanted to know why. She wanted me to seek the reason as to why I cry. It started with me describing the memories that like to pop up in my mind daily. All of the ones of me in the hospital, getting poked and pulled and crying out for help. So then the question was, why are these memories the most prominent? What was the common thread that linked these together? I couldn’t figure it out, so we moved on. She then asked, if you could use one word to describe why you cry, what would that be? I had no idea which made the tears come even harder.

Vulnerable. I cry because I feel so vulnerable now.

No, that’s not it.

Independence. I cry for my loss of independence.

No, that doesn’t work either.

Misunderstood. I cry because no one really understands me.

Nope.

Grief. I cry as I am grieving the life I once had.

Dammit that’s not it either.

Then I thought about the hospital, and the memories that haunted me the most. The ones that like to creep into my thoughts and distract me from all of the positive. What was the common link?

No one was there.

When I was having anxiety attacks on operating room tables. I was crying and begging them to stop because I was scared. They would hold me down as I struggled and I would look up the bright light and wish it would all be over.

When my blood pressure spiked and my heart felt like it was coming out of my chest. I kept fading in and out of consciousness and thought I was dying.

When I was told they had to pull my liver drain out at my bedside and they would not wait for my family to come to hold my hand.

When I was struggling to stand and I had to call the nurse to wipe me after the washroom.

When they stabbed my arms and held me down trying to insert a picc line.

Nurses and doctors were there, sure. For the most part they were so friendly and helpful, but they are not family. I also fully understand it is impossible for family to be in the hospital 24/7, so I don’t blame anybody.

So now that we have figured out the common link, is that the reason I cry so often? What is the word that I feel would best describe my feelings in general?

Alone. That’s the word.

No matter how much I explain, no matter who was there for what, no one has been there for it all. No one is in my head having to live with these thoughts, and the ones described above are just a handful of them.

Alone does not only describe those moments, but so many others. I have met a lot of wonderful people who can better understand my experiences, but no one fully can. No one I have met has had 6 surgeries. No one I have met has been told twice that they are inoperable.

So now that I have named it, I have to work on accepting it. There will never be anyone who will fully understand other than myself. So that is the next step. I am working on it, alone.

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Clear

I have played out this day over and over in my head before. Many nights I would lay in bed trying to fall asleep and fantasize about my doctors saying to me, “Your scan is clear.” I thought last year it was going to happen, and then was crippled by the news that all of my cancer was back. This year I was hesitant. I felt good and I know that I have changed so many things in my diet that are positive, but there was always the chance. Saying I was nervous would be an understatement. I was an emotional wreck in the days leading up to my results appointment. When the day finally arrived I walked into the office as he said walking behind me, “So your scan looks good.” Get out. I was shocked. Even my CEA blood levels were only 0.3! Chris cried, and I sat there taking it all in. In my fantasy I jumped out of my seat and hugged Dr. Jay. I cried and wanted to film it so I could share the “reveal” video with all of my friends. In reality, I just sat there almost faking happiness.

I am happy. I am beyond happy. I need a clear scan to then have another, and another, and eventually stop worrying every day about this damn disease. I know I will never be “cured”. Stage four cancer patients always live in fear. But I would love to have one day in the future where I wake up and think, “Holy shit I didn’t think of cancer once yesterday.”

For now, I’m going to try and forget that January is just three months away, and this blissful life could come crashing down.

Unknown

Since I have been home from the hospital, I have gone through my usual routine of being a hermit – or so I thought. Usually after any of my surgeries, I spend a lot of my time recovering quietly. Sure, I will go out the odd time, but always try not to make those times too social. I am never interested in talking to anyone – I just enjoy the peace and quiet. So this time I have been the same way, except I should be starting to turn the corner by now. I have been in a “funk” emotionally for the past few weeks and could not figure out what was wrong. At first I thought it was the recovery process, and then I thought maybe it is the stress of the wedding. Both of those do play a part in the way I am feeling, but they still were not enough. Yesterday I finally broke down and figured it out. I’m entering into a world of unknown. I have been here before, last summer to be exact. I had a successful surgery and entered into the “monitor” stage, only to find out after my first scan that everything was back. So this time I do not have the same delusions in my head that maybe, just maybe, I have finally beat this cancer shit. After my post op this week I just am left to sit around until October when I will have my next scan. It weighs so heavy on my mind.

The New Plan

If you are reading this and wondering how my surgery went, I apologize. I was called by my surgeon 3 weeks ago and told that he had to bump me. There was a patient he had who has a more complicated problem and needed my time slot. So my new surgery date is July 5th. I have been asked a lot, “How do you feel about that?”. Truthfully – I feel fine. I’m confident my surgeon wouldn’t have chosen me to move if he did not think that I would be ok.

The other interesting piece of information I found out recently is that I will no longer have to go back on chemo. During my post operation appointment, Dr. Jay let me know that after my last lung surgery I would be put back on chemo, particularly Oxaliplatin (or Eloxatin). This is the drug that is used in the FolFox treatment. I spoke up faster than he could finish his sentence and let out a big “Hell no”.

If you want to know why I was so fast to react – please refer to my posts in October 2015.

Dr. Jay was quick to respond and let me know that this was the only drug which is proven to work with cancer that has not yet formed a tumour. But my answer was still no. I am one of the rare people whose bodies cannot handle this drug. I told Dr. Jay that my oncologist would back me up but he wasn’t hearing it. I get it – I am known to complain about being on chemo because I hate it. So I assume he just thought this was me being dramatic. Jokes on him.

A few weeks ago I met up again with Dr. Jay and he let me know I was right and he should just listen to me moving forward.

Just kidding.

What he did say however is that he had a meeting with my oncologist and THEY decided that I cannot be on FolFox. It does not react well with my body and it would do more harm than good.

Oh reaaalllyyyyy???

So – no more chemo for me this summer. This news is amazing because I really didn’t want to be sick and bald for my wedding in September. I am slightly worried however. I have been off chemo for this long before and just exploded all over again with tumours. So I am being cautiously optimistic. Not one of my doctors is saying, “After this next surgery you will be cancer free and we will never see you again.” Actually what they have said is, “This most likely won’t be the last operation you have – just so you know.”

Cool.

 

Worrywart

Every little ache or pain I have, my mind begins to wonder – Is this THAT bad? Should I go see a doctor? I’m always nervous to go to a walk-in or the hospital because when new doctors find out about me, they run every test known to man. Here is a breakdown of my train of thought:

So a little bit of pain in my back is probably just a pulled muscle right? Hold on let me google it…. Ok the organ located in that area is the right kidney…. So is the pain from a muscle or is it my kidneys? Well I’m having no problems in the bathroom so it must just be my muscle….. But it is so close to my liver – maybe it’s just my body healing from the surgery….. Or it is the cancer that jumped from my liver to my kidney….. Ok I will just wait one more day and see if it gets worse. 

Here’s another one that also happened this week:

Hmm, my seatbelt is rubbing on my incision site – that’s not comfortable…. Ok where it is has been rubbing for the past few days seems to be irritated – I’ll just hold the belt away from it…. So it’s been a week and the irritation has become larger and now even if my shirt floats by it, I feel like someone is sticking their finger in an open wound – I’ll leave it a few more days…. Hmm my shirt feels wet, oh that’s because it wasn’t swollen it was infected and filled with puss that has seemed to have popped open in the night…. Guess I’ll call the doctor – maybe I should have gone earlier?

I can’t run off to the doctor everytime I have an ache in my body – I would live at the hospital (even though I already feel like I do). However if I leave things and they are something serious, then I am just hurting myself and making things worse. I’m sure I am not the only crazy person out there. 

Scan Day

I’m usually not nervous for my scans, probably because I have never had a clear one for a significant amount of time yet. Today’s scan is a little worrisome. If there are any additional growths – they will be calling off my surgeries. I know I won’t be any worse off than I thought I was in the Fall, but now I have started “hoping” again. What am I dreaming about when I lay in bed at night? Going back to work. I know, I sound like a crazy person, but I can’t tell you how much I miss working. I think it is because I am such a goal oriented person. I had so many things I wanted to accomplish in the workforce. I set goals for myself of where I would be at this point in my life – and it is really hard to give those things up. If I am able to go back in the Fall, it will be like starting at square one. I am hoping that I will be able to pick things back up at a rapid rate, but who really knows? I have no idea the greater effects all of the drugs and stress has had on my brain. If you look up the term “chemo brain” it is real. It is something that gets referred to and joked about all the time amongst the cancer community. I am not sure we can fully blame chemo for all of our issues, I feel like the stress from everything that has gone on plays a major role in our depleting brain functions. Unfortunatly at this point it is kind of out of my control. I just have to hope for the best – as I do with everything – and continue on with my day. Listen to me – I am stressing about the effects stress has on myself. Kind of a contradiction. 

Food Poisoning

Well this was a first that I do not welcome into my life ever again. And here I was thinking that throwing up on chemo was bad. Oh no – food poisoning is like no other. I am pretty positive that is what was wrong with me- although the doctors have no way of proving it. It started at 3:30am and was every half an hour until 4:00pm. Right around 1:00pm I realized I couldn’t take it anymore and was becoming weaker by the minute since I couldn’t even keep water down. Now that I know the hospital system so well, I knew emerg would be my best course of action. I needed an IV of fluids stat. Off we went – on Chris’s birthday too – poor guy. 

I always have to be upfront with the nurses and doctors at the hospital right from the start. Let them know I do have stage 4 cancer and I just came off of chemotherapy. I know the drill. My immune system is compromised and no one can risk leaving me out with all of the sick patients for too long. We waited approximately an hour or so and then were shown into our own room. 

From here I thought it was going to be easy, hook me up with some saline and then ship me off. Wrong. I always forget how much weight my disease carries. Food poisoning was their best case scenario, and they were starting at the worst – that this whole thing was cancer related. It didn’t even dawn on me once that that is what could be the issue. The doctor wanted to run multiple blood tests and a urine test to rule out any sort of infection. Even my temperature being only two degrees higher than normal had them concerned and they began monitoring that – which was super annoying because I was freezing and was only allowed a thin sheet. 

After being at the hospital for 7 hours now, the tests results came back fine – and yet they were still concerned. If I wasn’t scheduled by my regular doctors for a CT scan the following week, they would have ordered one for me that night. It is fantastic that our health system cares so much for patients like myself – I guess I better start taking my disease as serious as they do. I know it is horrible, but I never think that every single time I feel sick it may be cancer related. I mean I guess I should? But who really wants to live like that. The ER doctor gave me the option to stay over night so I could be monitored. By this point I was able to keep fluids down for the past two hours. I opted to go home but promised if I was sick one more time either that night or the next day, I would come right back. Too bad they don’t have a test to prove it was food poisoning, would have been a much shorter trip.