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.
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.
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.”
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?
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.
A long time ago I decided I was not a pill popper. I would leave my headaches to almost the point of no return before I would take an Advil. This was not always the wisest decision, but for some reason I did not want to take the pill. With my surgeries I have done the same thing. The previous two I was on all sorts of pain medication – and my body became addicted. It was a scary thing. I was experiencing withdrawals and it took me close to two months to safely come off of them. With this surgery I explained all of my concerns during my pre-op. I told them the only drug that was ok to give me, and they agreed. What I began to notice in the hospital right away when I woke up is how drugged up I felt. (And no I am not talking RIGHT when I woke up – obviously) Even with a minimal amount of pain medicine, I was still very loopy and do not remember much. I know pain control is a very serious thing post op. You can cause more damage if you stay stiff and do not get up from a laying down position. Even still, second day in the hospital I decided I would push past the pain and stop taking the pain medication. This has been difficult. I am at home now but am still struggling. I of course feel better with each day, but it is still very painful. Not only am I sore and swollen down my left side of my ribs, but my shoulder and neck are all out of wack. At first I could not figure out why – then we realized the position they must have flung me in during surgery. My arm was pulled tight above my head for two hours – no wonder I am in pain. With pain comes insomnia. It is extremely difficult to sleep when you are in constant discomfort. Still – I choose to endure. The “high” feeling I receive from the drugs is not fun for me. I know this pain will not last – and therefore I am ok with my decision. I just began this morning to take an Advil to help with the joint pain however. Having a piece of your lung cut out is one thing, but having a stiff neck is another.
It has been one full week now since I have been home from the hospital. I had high hopes going in that this time would be different. If they knew the drugs that did not work for me, I would be in the clear. Nope, wrong again. It started off so well I thought. I woke up from my surgery and was almost fully lucid by Monday night. Tuesday morning they removed the drainage tube running down my nose into my stomach (I did not have this last time…. not fun). By Tuesday afternoon they were moving me out of the ICU and into the surgery ward. Then there was Wednesday. The morning of this day is foggy to me, but I know by the afternoon my pulse had risen to 160 and I thought I was dying. Seriously though. I would look the the clock and a minute would feel like an hour. I actually thought, “Well, this is how I die”. In order to try and get my heart rate under control, a doctor came in and said something to me, but all I could make out was, “….going to hurt a lot…. stop your heart…. could control your heart rate….”. Since I thought I was dying anyways, I was willing to try anything at this point. Now, I am not sure how they did it – but I know it happened. My heart stopped and I arched my back so fast in pain. Sure enough, I was back down in the ICU that night. Thursday morning I was told they would like to put in a drain in my side to release fluid building up around my liver. Another procedure to be done while I am awake? Can’t wait! This time there was no singing or high fives – just a lot of crying. Hallucinations came and went for the next few days, but by Saturday I was well enough to move back to the ward. By Monday the vac was off my wound, and they pulled the drain out from my side (now that again…. was not fun). Tuesday afternoon came and I was good to go and on my way home.
Would you like to hear something hilarious? A few days ago I was called “sir”. Yep, that’s right – “And sir what kind of sub would you like?”. After hearing my voice that young boy proceeded to fumble over the bread. No more than 3 days later a young lady at the gas station said – “Ooo I like your hair cut”. The way the world works is so strange.
Well, just 4 days left till surgery. 4 days left till a 20% of liver failure. That is the statistic that seems to be sticking in my mind. 20%. I know that number could be worse… but who wants a chance at liver failure at all? The positive side is I see myself back at work. I see myself working and laughing at the past. Little thoughts like this get me through the statistics.
These next few days are quite busy for me. I am trying to do as much as possible since I know I will be laying on my rear for the next few weeks. Wish me luck! I will be in the hospital for a week so once I am feeling like myself again I’ll post about my time :).
Sorry for being so distant. It’s not you it’s me. My thoughts lately have been so scrambled that trying to write them down seemed like a daunting task. My second round of surgery happening so soon after my first really threw me for a loop. The first time around I was more anxious than nervous. This time however I am extra nervous. The days leading up seem to be flying by and I am running out of time.
Since I know what to expect this time around with all of the pain, I am dreading Monday. The complications I had during my last surgery will hopefully be avoided this time however. I found out while reading the surgical notes during my pre-op, that a resident performed my epidural last time. This person had a problem and a staff member had to step in. The needle was placed too far in, and caused a small spinal fluid leak – which lead to my migraines during recovery. The other piece of important information we discovered is that my body cannot tolerate injected hydromorphone. This is what lead to my hallucinations – so again this time it should be avoided.
I am very hopeful now that these two issues should be resolved, and my hospital recovery should run much smoother.
Bring it on extended left hepatectomy.
I should be happy this morning. The sun is out, most of my back and stomach pains are slowly going down, but still I sit with tears running down my face. Why? Because every doctor visit I realize how scary my life has become. There is never just “good news” when I visit the doctor. It always seems to be good news wrapped up in some sort of bad news.
“We were able to remove all of your colon cancer with large margins – however even on the edges of those margins we found microscopic cancer cells.”
I feel uplifted for a second just to be pushed back down the next. I knew this journey would not be easy, but in the beginning it kind of was. I would joke that other than my chemo days, I felt completely fine. That lifestyle has changed. I am in constant pain because my wound has reopened right above my belly button. I am unable to lift pretty much anything so when my cat has a crazy moment, I am unable to even lift him off the counter.
All I keep thinking is – I have to do this all over again. I will just be getting back to my old self when I will be readmitted to the hospital for surgery. It is a depressing feeling to say the least. I should be thankful that not only were they able to complete the first operation, but the second one is already being discussed. This is easier said than done. Every hour my mood changes from, “Yay surgery!” to “Yay surgery?”.
You are never fully conscious of how often you use a muscle until it is in pain. I can tell you now from experience, we use our abdominal muscles for EVERYTHING. The common uses, I was able to brace myself for – like sitting up (although this is still one of the worst things), bending over, etc. The little pains I was not expecting were opening a door, turning on a tap, bumps on the road while in the car – these and more all caught me off guard. Since our core really is essential in our stability, having a good grip on a water bottle even became a challenge. Then I dropped one, cap off. My first reaction was to grab it but to my surprise, instant lighting pain from my core. I had no choice but to watch it all pour out while my mother got up to clean it.
Sleeping is and continues to be the hardest part of my healing. I am only able to sleep on my back. Laying on my side, all of my insides shift and put pressure on my wound. My staples feel like a buttoned shirt that is 3 sizes too small – all just holding on for dear life. So as morbid as this may sound, I now sleep like I am in a coffin. I should not really even call it sleep, it is more like a doze for a few hours if I am lucky. Then I wake up in pain because my back and neck want a break. A few nights ago I awoke with a tickle in my throat (Did I mention how much I now hate to cough?) – I had to first roll over and slowly pull myself up, and then cough. The word “cough” also does not accurately describe the action I am performing. In order to suffer the least amount of agony, my coughing is high-pitched and shallow – a perfect Zoolander impression.
A piece of advice to anyone who may help someone with abdominal pains in the future – pulling them up is worse than them sitting up on their own. The act of force causes my muscles to tense up more then if I slowly ease into a position. Someone should teach the physiotherapists this at the hospital. On the day after my operation they forced me to sit up by yanking my arms. It hurt a little.
This surgery has been by far the hardest thing I have experienced in my life. I was nervous the morning of, but more for the needle in the hand. When it came time to take me in to the operating room, I was a crying mess. Said goodbye to my parents and then walked in to a room full of doctors. They said all the things they could say to try and calm me down, but it was not working. I think they tried to give me the drugs to shut me up as fast as they could. The rest of Monday is blur, I remembering seeing my parents I think? I was so doped up who knows what I was dreaming.
Tuesday to Friday afternoon I was in a doped up state. I would come in and out of consciousness. Wednesday I even hallucinated all day which was so scary. A combo of all of the drugs they had me on was giving me a reaction. They luckily figured it out before I was in a psych ward. Tuesday they also went back in for 4 hours to block the vein in my liver. I was awake for this – do not worry I was heavily doped up. The nurse who was with me came to visit on Saturday night and I asked her – “I vaguely remember singing ‘Come On Eileen’. True or False?”. Very much true. She said I was singing and trying to high five doctors while open on the table – so my hands had to be restrained.
Friday afternoon out of no where, my brain turned back on. I was finally myself again! The good news was that I could actually now do things such as read, look at my phone, etc. The bad news was that when people were not visiting it was just me, myself and I. Hospitals are extremely boring. It is also hard to sleep when a nurse comes to take your stats every two hours. Friday night my surgeon visited and let me know I was free to leave on Sunday.
Now at home, life it so much better. I am in constant pain and it is hard to really do anything but I push through. Day by day I am getting better. Sitting on a chair, no one would be able to tell what I have been through. Underneath my shirt however, now tells a story. *Warning: the below picture may be graphic for some. Viewer discretion is advised*