Black Out

No, this is not about to be a hilarious story of some drunken antics I got up to over the long weekend. And for the record, I have never been “black out drunk”. So to all those friends who over the years I said, “I did what? Oh I don’t remember at all” – that statement was a load of bull.

My first surgery of the summer took place on May 2nd and was quickly followed by a second on May 4th. I called my fiancé on May 8th and to my surprise (and apparently also his), he said “Oh hi – Wow you sound like yourself today.” Um sorry? The weird thing about blacking out in the hospital is that you do not realize you were until it is all pointed out to you. It still hadn’t hit me yet that the past week of my life was all just a blur. A few days later my mom was visiting after work (as she did everyday) and said, “Oh you were so mean on Saturday. You were yelling at me and told me to leave and never come back. I cried to your father about how if this was your new personality, I don’t think I want to take you home.” How horrible is that? I felt awful. I can remember pieces of that week, mainly just the painful things. I remember having to flip on my sides for my sponge bath, and how painful that was. I remember HGTV always being on the television. I remember the day I hallucinated and screamed out to my nurses that I must have a fever (which I was right about). I know one afternoon I was screaming out in pain and begged anyone who would listen to me to make it go away. Besides those few things, I don’t remember much else. 

I asked around and have been able to figure out what I was saying and doing for those days. Here are some stories I was told:

“One day you wanted to pull out the line going into your port. You were so angry when we tried to hold you down and stop you from doing it.”

“You thought I had your phone in my purse and began to throw everything out of it screaming at me to give it back.”

“The tv stopped working and you lost it.”

“You thought I had cookies in my hand and kept reaching out to get them.”

“You thought I had doughnuts and wanted them.”

“Everything on your lunch tray you wanted to put in your coffee cup. Then you got mad when we wouldn’t let you.”

“You walked the halls of the ICU with your catheter, epidural and chest tube in – somehow in no pain.”

“Anything you tried to do you would fall asleep after 20 seconds. Mid sip of a drink – asleep. On the phone – asleep.”

“We were concerned with how out of it you were. We thought you would slip into a coma in the night.” 
Sounds fabulous. 

Summer 2016

Things to look forward to:

Brand new kitchen, powder room, front door, flooring, coat closet, wall paint, light fixtures, screen door

– Main floor makeover

– 30th birthday 

– Summer weather

– Jack & Jill

– Best friends wedding

– Wedding shower

– WEDDING (September 10th by the way)
Things I dread:

– Every day and night spent in the hospital

– Pain

– Not being able to sleep comfortably

– Missing the pup for 2-3 months

– Sleeping alone for 2-3 months

– Pain

– Chemo

– Losing my hair just before the wedding

– Gaining weight from steriods just before the wedding

– Being bald and fat in all of my wedding pictures

– Pain

– Unable to walk the dog until the Fall

– Feeling alone

– Not being able to drive 

– Pain
 

Beachside 

Two years ago today I announced my diagnosis with cancer. What a different week this has been than compared to that of 2014. Crying everyday, in and out of doctors offices – but this past week I have been relaxing beachside in Jamaica. I know my doctors never thought I would be sitting here today – myself, not so sure. 

Now that this life has become my constant, I can begin to reflect back on the innocence I once had. I was so scared but confident I would kick cancer in the butt. I had a lot of anger and would sometimes take that out on people close to me. Some of those people understood that my mind was so fucked up I couldn’t control it – and they stuck around. For that I am forever grateful. Others were not as strong. When you enter into the “chronic disease” category, the life around you shifts. Some people rally behind you and say things like “Don’t worry, I am in your corner.” But as the days and weeks turn into years, some of them slowly take off their gloves and step out of the ring. They too are exhausted from supporting the constant fight. It is very difficult for me to watch people one by one drop their gloves, but I am starting to come to peace with it. I too am exhausted fighting, but I don’t have the option to back out. I must keep going. Round after round I await for the judges to announce their victor, but it never seems to happen. So I wipe my brow, pick up my gloves, and get back in the ring. 

As I reach the end of my vacation, the reality of what is to come starts to set in. Tuesday I will have another scan to determine how my summer will be. There is no “winning” option, so I am not sure what to hope for. The fighter in me says surgery. Cut and conquer. Surgery will hopefully buy me some time for a much needed break from treatment. Just once I would like to have an appointment where they say, “Your scan is clear. See you in three months.” 

The warm breeze blowing across my body right now reminds me to take the time to appreciate what is in front of me today. Maybe three month breaks are not in my future – but today I am happy. Today I feel strong. So today I will enjoy my last day here and try not to worry about what is to come. 

  

Surgery Round 4, 5, and 6

Yes, you read it right, I have three surgeries coming up. My scan results left me again feeling uneasy. A met on my lung and a met on my liver have showed a slight growth. Not anything that is majorly alarming, however my surgeons are concerned. Since the chemo has only been out my system for three weeks, this is too fast for things to already be growing. So yet again, they are scheduling me for another CT scan. If that scan shows growth again, then all surgeries are off and I get hooked up to the lovely chemo cocktail. If they stay stable, I will be operated on starting May 2nd. This one will be for the four on my upper right lung. Thankfully this surgery can be completed laparoscopically so I will only have three small incisions. Following this surgery on May 4th, they will perform my liver surgery. Unfortunately Dr. Jay has decided not to use the same abdominal incision he has accessed twice before, but will open me up down and across the right side of my upper abdomen/lower chest. From what I have heard, recovery from this incision is much worse – so I am totally looking forward to that. If all goes well I will be in the hospital for a total of 2.5 weeks. Shortly after I will have yet another CT scan and if that again shows no new growths, they will perform the lung wedge resection on my left side in mid-June. This side is a tad trickier, so he is planning for laparoscopic however it may end up having to be a larger incision.

So the week of my 30th birthday, after my scan, I will either find out that my cancer is WAY more aggressive than anyone has imagined and my surgeries will be cancelled – or – my body is about to endure a shit ton of pain with the hope of a successful outcome. 

Again, all of the same worst case scenerios have to be spoken about and signed off. Obviously as with all surgeries there is a chance of complications, infections, liver or lung failure, yadda yadda yadda. The one that always worries me more is the increased chance of reoccurance. Weakening my body will just give the cancer all the ammo it needs to get stronger and maybe multiply again. Even if everything goes as planned and nothing grows, six weeks after my third surgery I will be right back on chemo for “maintenance”. It is a never ending rollercoaster. 

So to sum it up, on my 30th birthday on April 30th I will either be upset at the fact that my cancer is being a little bitch and growing, or be upset at the fact that I am about to endure a fucking awful summer of multiple surgeries. Happy Birthday?

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. 

The Plan

I’m not sure if it is so much a plan, but more like a “choose your own adventure”. 

Sitting with my surgeon and my oncologist they both let me know I have options, and here are the main two:

– Have surgery in the Spring/Summer 

Or

– Have surgery in late Fall

Without typing for days and boring you with all of the little details, the way I read those options are:

– Less chemo

Or

-More chemo

As you may know by now, man do I hate chemo – so you can guess which option I am going for.

So what will this entail? Well I will have my lovely mid section sliced open again to access my liver. Totally cool. Oh and I will have both lungs operated on. Double chest tube! I am PRAYING that they say I only have to do two more rounds of chemo and then I will get my pre-operation break for all of March and April. However it is more likely that they will push me to do chemo right up until 6 weeks before my surgery. 

Dilemma

Yesterday was my first scan after my horrible one in September. Since then (as I hope you have read), I have changed many different things in regards to my treatment and lifestyle. Yesterday was the day to see if all that has paid off.

40 minutes before my appointment with my surgeon my mother and I were relaxing in the hospital Second Cup when I felt a pat on the head. Dr. Jay in his scrubs and what seemed to be fresh out of surgery. So now in rough quotes is what we discussed:

“Oh hello! I can just quickly update you now but then I would like to see you next week once the radiologist gives me his report on your scans. They were good, really good actually. From what I can tell they all have shrunk and some have disappeared even. I think there are 4 left on your lung and 2 on your liver? All of them seem to be superficial as well. I want to wait for the report and speak to Dr.Ko, but we might be able to get rid of them for you.”

This moment was mixed – happiness obviously that everything is working, but confusion and another feeling I have yet to name. 

“Surgery? So you can remove them laparoscopicly?”

“Ha ha no. I have hacked at your liver so many times I would need a full visual.”

“So you want to cut. Cut me down my front. Again. For the third time….. I don’t know about this. I was so weak and my body will have to recover and that could make everything worse.”

“I know it is a lot to think about. I didn’t think we would be here again either to tell you the truth. Hell when I first met you I saw your scan I can honestly say I never thought you would be in my office again. But you suprised me then and again you are suprising me today. Let’s be honest. You have stage 4 cancer. I can cut it out and the chance of reoccurance is still high. What this could do though is buy you some time off of chemo, so you can have a some what regular life.”

“If you want me to consider this then next week you better have an amazing game plan. Something like you are going to cut this shit out and then pay for me to go to Jamaica.”

He laughed. “I’ll come up to visit you during chemo next week and we will chat.”

So I am sure most of you are thinking – “YAY! Cut that shit out!” And now I will explain to you in short form (as my mind is running a mile a minute) the dilemma in my head.

Scenario 1: We operate. – I would not only have to heal my front AGAIN I would also have incisions from my lung which would mean a chest tube AGAIN. So how am I sleeping? Not on my stomach, my sides or my back. Even after all that with the shitty recovery, and the drugs I hate being on, and then months of pain, and I have a puppy who will jump and not understand, and the chance of infection, and hospital complications… I will be so weak that it could grow again. So the surgery was for nothing and I’m back on chemo.

Scenario 2: We stay on course. – If some have already disappeared and others have shrunk then let’s just keep me on the low dose of chemo and keep my healthy lifestyle up. It’s obviously working for me and I feel great. But then we know I still have the cancer in me because we can see it. And there may come a point where they stop shrinking, and the amount of chemo in my system will make having a surgery too risky. So now they could grow and get worse.

Scenario 3: We wait for one more scan. – Have a couple more doses of chemo and check back in to see what the boys are doing. Maybe they are all gone now? Or maybe something fucked up happened and they grew weird and now surgery is back off the table and I’m fucked all over again. 

Scenario 4: I somehow convince Dr. Jay who is a world class surgeon, who people fly in to have him use his God like hands to operate – that he is wrong. He can operate laparoscopicly and he just has to figure it out. Go back to the skills lab like I see in Greys Anatomy and make a replica of my liver and figure it the fuck out. This is a pipe dream I know, but you bet your ass I will say this to him on Wednesday.

So as you can see this is just a small picture as to the confusion in my head, and now I have to chose one that is right for me. They can all lead to health and they can all lead to shit. This is my dilemma. 

Power Port

Sounds like some sort of super hero. Power port to the rescue! – I think I’m still high from the meds. 

Last year during my first visit to the hospital I now call my second home – I was given a port-a-cath. This is not some sort of fancy alcohol, but a device that sits under my skin just below my throat. It gives my doctors and nurses direct access to my jugular vein. This comes in handy when you have chemo every two weeks. No digging in your arm looking for a good vein – I just get hooked right up to the cocktail with a quick stab (or two) of a needle in my chest. This port worked wonders for me for a long time, right up until I began putting on weight. The pocket under my chest wall they created was pushed further and further away from the surface, due to the amount of fat I was gaining. This then proved to be troublesome to every nurse who tried to access it. I also had the kid size version of the port, since I used to be a skinny gal. With my more curvy figure, I needed the upgrade to the larger port. When I received the news I would be on chemo from now until the end of my life, my oncologist thought this was the perfect time to upgrade me to the Power Port. 

What’s the difference? It has a larger area for the nurse to guide her needle into – so it is harder to miss. It also is able to be used for my CT scans for the contrast solution – which means less arm needles. Getting blood taken is easy – I’m talking about the needle they use with a catheter. They always seem to push and pull it around in my arm, that I usually end up dizzy and on the floor. 

Leading up to my day surgery I was calm. I arranged ahead of time with my doctors that I would like to be put to sleep for this procedure. Something that is not common for this surgery – but they remembered me from all my previous visits. No one wants a crier on the table with her arms waving about telling everyone to back off until she “gets the drugs”. 

I walked into the operating room, climbed up on the cold metal table, and started slowly panicking. The anesthesiologist was really sweet and told me a joke while he poked around at my hand. Stupid catheters. There I lay, staring up at the bright lights. The nurse came to put my oxygen mask on, and the tears started trickling down my face. This is my life now – I thought. How did I end up here? This surgical team knows me so well now they are joking around about having “whip and nae nae” play as part of the background music before they push the “sleepy” drugs into my system. 

I awoke in pain, but nothing that I couldn’t handle. Any surgery now is nothing compared to all my others. What was bothering me more however was my left eye. It felt like an eyelash fell it in. I was half drugged up still when I asked a nurse for a mirror to look at. He quickly let me know they didn’t have one. He probably thought it was just the drugs talking – so I don’t blame him. After about 45 minutes I was sent home – and my eye was still bothering me. No less than an hour later after being home, it got worse. The annoying feeling turned into pain and I could no longer keep my eye open. Off to emerg we went. Three hours later I was finally told that during my unconscious state I scratched my eye. Awesome. He sent me home with some gel and let me know it will take approximately three days to heal. Guess who had a sleepless night? They should give patients mittens until they are conscious enough to not stab their eyes out. 

Scar Tissue

I love my surgeon. The man saved my life – how could I not love him? The only thing I would change however – but I think this goes for all surgeons – they need to give WAY more information on how to proceed post operation. Of course it is awesome that you helped to save lives, but then a lot of us are left with a big nasty scar, and not a whole lot of information. Recently I was informed that the reason my stomach now looks so funny, has a lot to do with the amount of scar tissue I have. I knew this (kind of), but what I did not know is that there is actually something I can do about it. There are registered massage therapists out there who specialize in helping to break down the scar tissue underneath the skin. Over time this helps to flatten it out and allow the tissue to begin laying back to normal. Who knew!? Not I. Could I have started this process sooner? Probably not, because my entire body was so tender during chemo that I would not have been able to handle the massage. Enough time has passed now from my last surgery that I am finally able to get some help. It is not the most comfortable procedure – a stranger running their hands up and down my scar – however I do believe it will help. I will take a picture today and then one again after six sessions and let you all know what the deal is. Stay tuned. 

Foot In Mouth

Something new happened to me in one of my groups the other day. I was new to this group at the cancer centre I go to, so I had to introduce myself, and then in turn they all did the same. I am so used to telling people that I haven’t met my story, that I can sum it up in under two minutes. I remember before it would take me so long to tell it, going through every detail. Then I realized that all the details were not needed and I could just skip to the main event. 

I have stage 4 colon cancer, I have had 3 surgeries and 12 rounds of chemo, I am now waiting on a scan coming up to tell me if I am cancer free or not. Actually, that is probably under two minutes. 

The social worker leading the group asked me to explain a little more about my surgeries and chemo. I let everyone know that the first two surgeries were extremely hard, and I am still recovering from them. My abdonimal section will probably never work the same again. I am in discomfort daily. I then explained how I had 4 rounds of chemo, then surgery, then another 9 and had to stop. The chemo was horrible and was hurting me more than it was helping so I chose to stop. 

After my complaining was over, the man next to me introduced himself. He was 33, stage 4 colon cancer as well. Then he went on to say he was diagnosed a year ago, still had not had a single surgery, and as had 26 chemo treatments so far. 

“Shit.” I said out loud. “I should not have been complaining.” He won the poker hand.

You may be wondering how he can have 26 rounds and still be out and about. Well when they give you chemotheraphy in order to help your cancer stay at bay, and know you will be on it for a long time, your dose is not as strong. It is still horrible, don’t get me wrong, but it is not the heavy dose that would happen if they knew the number of rounds you would be having. 

When I asked him who is surgeon was he let me know he didn’t really have one. He met a man when he was first diagnosed who told him he was inoperable, and that was it. He took that response and just moved on. He never got a second opinion……

I quickly grabbed a piece of paper and scribbled down the name and number of my surgeon.

“I’m not saying he will be able to do anything, but he worked miracles on me. The worst he can say is no, and then you are no better off than you are now.”

Last I saw him he had just had a CT scan, and him and his oncologist were speaking about sending it to my surgeon.