Luke’s Ordeal 14 November 2011
On September 21st, after a normal day of work and evening activities, I started to experience a strange pain deep within my left shoulder. This occurred around 10:30pm when I laid down to go to sleep for the night. This pain was in no way related to movement, but I could tell that is was connected to my breathing. Keeping me awake for an hour or so, I did a little research on the computer because I thought these could possibly be heart attack related symptoms. I found it highly unlikely that I was having a heart attack, because I was feeling that I was in some of the best physical shape of my life and only 35 years old with no medical history and a healthy diet. I came across a line of advice on a heart awareness website that said regardless of age or fitness, if you have the symptoms that I was experiencing, go see a doctor. I decided to try and sleep on it.
Feeling normal again in the morning, I was reluctant to walk into the ER and ask them to check me out. I decided to go to work instead, against Silvia's better judgement, and try to book an appointment with my GP. Upon arriving at work, I mentioned to the foreman that I might be leaving early if I could get a doctor's appointment for the afternoon. Luckily he told me that I shouldn't mess around at all and advised me to go straight to a walk-in clinic nearby. I'm grateful for his advice, and took it.
After waiting for the clinic to open I told my story to the doctor. She couldn't find anything wrong with me, but thought it was serious enough to refer me to the ER at the Lions' Gate Hospital.
Off to the ER I went, feeling 100% normal. The doctor there, Dr. Gill, was a really great and caring doctor. I was half expecting to hear, "Yeah, whatever. You’re fine. Go back to work." She took immediate interest and did all the normal tests plus ordered a cardiogram, blood work, and chest x-ray. The cardiogram showed that I had "an athletic heart," but the x-ray showed a mass on my heart. She could not figure out what it was and ordered a CT scan. Up until this point everything had happened quickly at the hospital. Now the waiting started, which I figured was probably not a good sign. Dr. Gill's demeanour became more sympathetic the next time she came by to check on me and she asked me if I wanted my wife to be there. I thought it would be easier to hear the forthcoming bad news by myself, and wanted to be able to "sugar coat" it when telling Silvia.
I was finally told that the CT scan revealed that there was a tumor on the left-hand side of my heart that was 7cm by 4cm. Dr. Gill had been consulting with a Thoracic surgeon and VGH, who thought this was most likely a germ cell tumour(teratoma) and probably benign, but would have to wait a few days for results from additional blood work. She gave me her best wishes and put me in contact with Dr. John Yee, the thoracic surgeon.
I'd be lying if I said that I left the hospital that Thursday morning with no anxiety. I did actually feel calmly accepting of this news and decided that staying positive while I waited to hear from Dr. Yee was the best choice. When I got home I called his office and they made room to see me the following Tuesday, as Monday was a surgery day. Over the next few days I felt mostly
normal, but the shoulder pain would return occasionally and I could kind of feel just how crowded my chest was.
Meeting Dr. Yee on the following Tuesday really made me feel reassured. He has an incredibly gentle touch and kind presence, and told me he thought I had nothing to worry about. He said that although he had never seen one in this spot before, that I had a benign teratoma. Judging from the CT scan it was either connected to my pericardium or diaphragm. He wanted an MRI done so he could determine this and the anatomy of the tumour. At this time I was told that he was pretty sure he could remove it thorascopically, making a couple of incisions and then trying to compress the tumour in a plastic bag to be removed through a tube as small as possible. His assistant said she would make an MRI appointment for me and surgery was tentatively booked for October 17th.
Now the waiting game began. One week passes, no call for the MRI. I call Dr. Yee's assistant and she seems unconcerned, even though the surgery date is drawing nearer. The week before the scheduled surgery I started to bother her more about the MRI and still nothing happened. I was not even called on the Friday before, so I called the office at 4pm. She answered and put me on hold, passing me off to Dr. Yee. He told me he had a really big lung surgery that had to be done on Monday that was for a cancer patient, and that since mine was less urgent that I would have to reschedule. I understood completely, but was really frustrated by his assistant's lack of communication. I was feeling pretty much normal, but felt like my everyday life was sitting in limbo outside of my control. I had not been working, but was trying to stay active hiking with Spike and rock climbing with friends when I was feeling up for it. I mostly was sitting around reading books, playing guitar, drinking too much pale ale, and napping to pass the time.
I had surgery rescheduled for November 3rd, and actually finally got a call for the MRI and to meet with an anaesthesiologist at VGH the same day that I was scheduled for the MRI. When the anaesthesiologist asked me about my surgery he told me that I was booked for a sternotomy. This was news to me and was really the first time that I had real anxiety. My brain was absolutely rejecting the thought of my sternum being cut open and my chest spread apart. Upon leaving I walked over to Dr. Yee's office to ask his assistant about this shocking news and to drop off a form for EI sickness benefits. She assured me that it was only precautionary and as a worse case scenario so that everything was ready in the operating room if there was an emergency.
The following day Silvia and I had a meeting with a new GP, who I think is going to be really good. This was the first time that I actually could not contain my emotions and broke down a little bit in front of Silvia while telling the doctor about my tumour and surgery. They were both very comforting and she recommended that I take a small dose of Ativan anytime I was feeling really anxious between now and the surgery. I am glad that she did because I found this really helpful to relax at times when my mind couldn't keep positive.
Finally November 3rd arrived. Silvia escorted me through preadmissions. I saw Dr. Yee, who had yet more bad news. The MRI turned out to show that the tumour was not a teratoma at all, but was some type of fibrous tumour attached to the outside of my lung. He reassured me that it
should be no problem to remove and that he thought he'd be able to save 90% of my lung. I said goodbye to Silvia and was wheeled into the operating room.
Woke up in post op and was moved up to the "Step Down" room of the Thoracic’s ward, where I was able to see Silvia again. I won't go into too much detail, all I can say is that I wouldn't wish this type of surgery on my worst enemy. It makes me really sad to think that children also have to go through this. Dr. Yee came by in the morning with the good news that initial reports from pathology indicated the tumour to be benign, although more work was needed due to different layers of composition. He explained to me that he only removed a small wedge from my lung, along with any surrounding lymph nodes, and that as long at the pathology reports continued to be good he expected me to feel 100% upon recovery.
From the evening of Thursday (Nov 3rd) to Monday (Nov 7th) I spent trying to recover in "Step Down," which is the acute care area you are put in after major surgery. Although I was beginning to feel stronger and breathing a lot better, I ran a fever the whole time and was continuously coughing up blood. Upon return to the room on Monday afternoon after walking a loop around the 12th floor, I found Dr. Yee waiting for us with more bad news. The CT scan I had taken earlier in the day showed the bottom half of my lung to be filled with blood. Dr. Yee explained that he had cut very close to a blood vessel in the lung when he removed the small wedge piece of my lung along with the tumour. The way in which the lung had repositioned itself in my chest with the large tumour being gone caused the blood vessel to be kinked, and blood was being trapped. He was supposed to leave town that night, but postponed his trip because he said it was urgent for me to go back to the operating room and have the lower half of my lung removed. This was really hard to deal with but I understood there was no choice.
The second surgery was done and I awoke in the post-op sometime around 8pm on Monday evening. I vaguely remember speaking to Dr. Yee, but was too out of it to comprehend or remember anything. That night in post-op was pure hell, as I was not allowed to drink water and my throat and mouth were so dry I could barely swallow. I was wide awake with no clock to know the time, just waiting to get back to the 12th floor where I could be reunited with drinking water. I was able to call Silvia and let her know I was alright. Dr. Yee had called her to let her know that surgery had gone well.
I felt really good about getting back to Step Down in the morning, and actually felt a lot better than after the first surgery. I think this was due to the fact that my body was getting used to all the nasty drugs for pain and anaesthesia. I was way more swollen than the first time, which I figured was due to having pretty much the same invasive procedure done in a matter of 5 days. Dr. Yee came by to check on me before going to the airport, and was happy with how things had gone and how I looked.
By Thursday I had recovered well enough to be moved into a semi-private room and one of my two chest tubes was removed. I was still experiencing a fever and the swelling had reduced a little to leave behind a huge mass under my armpit above the incision. One the thoracic surgeons, Dr. Laine, took a look at it and guessed it was a hematoma. He tried to drain it, but was only able to get out enough blood/fluid to send down to pathology. He said the results wouldn't be back for at least a couple days and hoped my body would absorb it by then.
I was still waiting to hear any more news on the pathology of my tumour, and when I asked Dr. Laine he told me he had spoken with Dr. Yee on the phone and that I should wait and talk to him. I figured this was probably bad news, and it was. Dr. Yee came in and woke me up at 11pm on Thursday night, after just arriving back in town. I felt happy to see him even though I knew he'd be bearing bad news. He small talked with me a bit, asked how Silvia was, took a close look at the hematoma under my arm then broke the news to me.
It turned out that the huge tumour he had removed on the 3rd of November was aggressively malignant. He told me that it is such a rare form of cancer that little was known about it and it was being passed on to some of the worlds' top pathologists for more research. He told me it was the same type of cancer that Terry Fox, an incredible Canadian hero, had. He mentioned that he was very glad the complications happened after the first surgery, because if they had not then he would now be calling me in to remove the rest of my lung as a precaution of the cancer spreading. He told me he was going out of town again in the morning, and that he wanted me to stay a few extra days to have the hematoma monitored, gave me a warm hand shake, asked about Silvia again, and told me to get some sleep.
This obviously hit me like a ton of bricks. One week ago I had come into the hospital thinking that I had a simple germ cell tumour to be removed, and quite suddenly I was now facing death. I spent the night going through what I figure are all the usual emotions and thoughts, "Why me?" "This is bull shit!" "What did I do to deserve this?" "Why does life have to be so hard?" etc. The thing that really hurt me the most was knowing that Silvia is going to have to watch me go through more suffering. She has been so strong, and absolutely my pillar while dealing with the pain and recovery so far. It is impossible to express how thankful and indebted I am to her. She's been taking care of Spike's needs all by herself, while bringing me nourishing food and drinks from home along with love and encouragement and spending so much time with me. Watching my recovery so far could not have been fun. Again I don't want to go into too much detail, but the pain of this surgery is unreal, and afterwards having a dozen tubes and wires connected to your body is maddening.
After a night of crying, reflecting on life, and trying to digest what all this means, the morning came and I tried my best to compose myself to be able to tell Silvia the news without breaking down emotionally. She arrived, and as always it was wonderful to see her angelic face. I almost told her everything without breaking down, but didn't quite manage. The pain in my chest was to strong at the time to really cry, but Silvia was able to help me let it out. I encouraged her to leave and go visit a friend for a few hours, but she didn't want to. She was able to get some support from friends and family over the phone.
At this point in time I was actually able to feel quite positive. I still had one chest tube and other assorted things connected to me and figured that I really needed to focus on getting rid of them and getting home before dealing with anything else. So much was on the plate, and I needed to eat it bit by bit. Thinking about the cancer and how to deal with it will have to wait until I'm out of the hospital and feeling better safely at home with Silvia and Spike.
I realize that in life the one guarantee is death, and I am not at all afraid of dying. I don't claim to know what happens after death, but one thing I'm certain of is that you are relieved from all of the suffering from this cruel world. What scares me is the method of dying. I have always hoped to go out suddenly when my time comes, rather than slowly wasting away in suffering and knowing your loved ones have to experience it also.
If I were to die tomorrow I would really have very few regrets. Aside from dealing with depression, I have had a really happy and fun filled life up to now. I would regret not letting my family know my disdain for the Mormon Church. This is not meant to be hurtful, but helpful, as I know my parents have always done what they have thought is best. The Mormon Church builds up a complex net of guilt and judgement that is truly difficult to escape from, after all, your "eternal salvation" is hanging in the balance and only you are in control of tipping the scales. I truly believe that guilt associated with being indoctrinated as a Mormon is what caused my brother Jared to take his own life in 1997 at the age of 25. I have never been able to have real closure with this. Jared was an awesome guy and I miss him every day. He had nothing to feel guilty or ashamed about and didn't deserve to die. Mormons threaten that if you leave the church that the warm comforting feeling of the "Holy Ghost" will leave you. Not true, you can get that so called spiritual feeling no problem lots of ways. You are systematically trapped into a society that is your entire life and only main group of friends, who will judge you by your actions. I don't want to go off on a tangent so I'll try to end this. It makes me very happy that my brother Sean and sister Suzanne were strong enough to be able to free themselves of the grasp of the church. This must have been so hard, yet so rewarding. It mostly makes me glad to see that Suzanne's small children can grow up without being fed all that nonsense, which I consider borderline abuse. They are lucky kids.
I would also regret not having been more patient in life. This is something I will really focus on in the future. Lastly, I would have wished to have done more in my life to help others in need. My life has centered around myself. I love my job as a carpenter, but it benefits no one but me in the long run. I spend my free time recreating and enjoying myself. Everything thus far has been about "myself." I feel like I really need to make an effort to volunteer my free time to help those that have been less fortunate than me, and help to ease some of the suffering that this mean world is constantly dishing out. I say this hoping that others might reflect and do the same.
I ask that you really love your loved ones, and make the best of any time with them. Life is way too short. Try your best to enjoy every second you have together because time and love are by far the most valuable things we have in this life, and both are in short supply.