A couple months ago I began telling my story, "My Journey Back to Life". With the first three parts of the story told already, today marks the telling of the fourth part of my story, My Week Living in Purgatory. If you haven't read the first three parts or would like a refresher here are the links:
A Day That Will Live In Infamy (Part 1)A Second Day of Infamy (Part 2)
A Third and Final Day of Infamy (Part 3)
So sit back, relax, grab a coffee and enjoy the next phase of my Journey.
As we left downtown Toronto heading back to my “temporary home” at Trillium, I have to say it felt pretty good finally knowing there was a plan in place to help defeat this monster; my Leukemia. Just knowing a plan now existed was an intensely liberating and invigorating experience. No longer was I going to be a victim to this terrible disease. No, I was already ready to fight, and now I had the plan to defeat it. Really though it wasn’t much more than a pseudo plan because I really didn’t have any of the specific details of the plan, and really had no idea of what I was getting myself into.
When you first hear about something like induction chemotherapy, you don’t really realize what it fully entails. I didn’t realize they were going to fill my body up with some of the most deadly and poisonous chemicals known to man over. And not just fill me up, but do it over and over again, until I was hanging on to my life with only a few blood cells left. Sure I knew chemotherapy meant having some pretty bad ass stuff put in me, but I had no idea the magnitude of it. Looking back it was probably better I didn’t know all that going on, it would have just increased my fear and anxiety while I waited to start my treatment.
So here I was back at Trillium, waiting for a bed to open up at PMH. My first couple days back at my newest “home” I had some “homework” to do. First up, I had to get my Hickman line inserted. This gets placed inside my chest, tunnels up to my clavicle and enters the large vein in my neck so it can be taken into the vena cava of my heart. This line allows for high doses of drugs, fluids, and most importantly, chemotherapy drugs to be delivered directly and expediently into my heart.
I was half excited to get my line put in because it meant I was moving one step closer to my goal of defeating this intruder, but on the other hand, I was scared shitless. This wasn’t like taking blood with a needle, this was real surgery, where they were inserting a tube into the major vein in my next and using that vein to gain access directly to the entrance of my heart.
Now don’t forget when I came into the hospital my platelets were an astonishingly low number of 18 (when they were supposed to be at a minimum of 150). For those that don’t know, platelets are the little cells that clot up any cuts in our body so we don’t bleed to death. And here I was getting holes cut in my chest and neck without having enough platelets to clot the cuts! Not something that gives you the warmth and satisfaction of knowing everything will be okay that is for sure!
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| The first bag of platelets |
Don’t worry though, I didn’t just go under the knife with this dangerously low level of platelets, we had a plan. I was to get two transfusion bags of platelets before the surgery to help my body not bleed out on the operating table.
The first bag of platelets went in very quickly. Just as it was finishing the porter arrived at my door; the surgeon was ready. You learn very quickly in hospitals that surgeons don’t wait for you, you wait for them; when they are ready, it is go time. The second bag of platelets was hung and I was whisked off to surgery.
I was brought to this long hallway outside the operating theater where the surgeon came up and explained the surgery he was about to perform. He seemed very competent, and had a very calming influence. If it weren’t for the fact that I was going into this surgery while the second bag of platelets was still transfusing, I might actually have been really calm; but alas this wasn’t the case.
As I was wheeled in for surgery I felt like I was on an episode of Grey’s Anatomy. Here I was, in this huge operating room with one table right in the centre of the room. All around the outside of the room were large glass windows where I could see the nurses and doctors washing up and sterilizing for the upcoming surgery. It was a little intimidating to say the least. But just to make this situation that much more uncomfortable, the room was freezing!
For this procedure they use an x-ray machine to watch the Hickman line move down your vein so they know exactly when it gets to the entrance of your heart. It turns out the x-ray machines like to perform better in the cold, so I was buried under a mountain of warmed blankets and off we went.
The surgery went off without any hitch. Throughout the whole time they monitor your blood pressure and heart rate to make sure everything is okay. All this did for me though was give a loud beeping noise that showed the nervousness that was running throughout my body. This beeping did help though, because for whole surgery I just focused on using my breathing to try and calm down and drop my heart rate.
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| Thumbs up post surgery, getting blood |
The Hickman line went in without any complications and without too much pain, which was great news! This meant no more needles for my daily blood tests J My veins, arms, and I couldn’t have been any happier. As the freezing wore off I became very sore from the procedure, but even this wasn’t enough to dampen my mood.
The next day I had my final “homework” test before I could begin chemotherapy. One of the chemotherapy drugs I was scheduled to receive, can destroy your heart. So before each round they need to make sure your heart is strong enough. Strong enough for what you may ask, well strong enough to withstand the barrage this chemotherapy agent was about unleash on it and only get destroyed a little bit.
To accomplish this test they inject a radioactive isotope into your blood stream, so they can record how much volume of blood your heart discharges with each beat. I was still excited because with my new Hickman I wasn’t supposed to need anymore needles. Well wouldn’t you know, this wasn’t my lucky day; it turns out the radioactive isotope can deteriorate the Hickman line so I required two more needles to inject the agent directly into my blood stream.
Once the isotope was injected and running through me, I couldn’t help but wonder if I was glowing green like Homer in the Simpsons. Unfortunately, there was no cool green glowing colour, just a deeper shade of purple on my arm where the needles went in.
Once the needles were done the actual test was really easy to endure. You just lay on a bed in a couple uncomfortable positions while a machine records your heart output. It took about an hour or so to complete.
My two “homework” preparation procedures were done, and I was anxious and ready to get this treatment started. Like in all great stories though, this is when the adversity kicks in. The “hero” has all the momentum and needs a dose of reality to overcome J So of course since I had some momentum building towards my battle, a terrible part came; the waiting.
I like to refer to this period as my week living in purgatory. Why you may ask? Well I wasn’t quite dead; but I also wasn’t living, being kept alive by blood transfusions. And with each passing day my leukemia got worse and I got more and more frightened. This was a really confusing and scary time for me, I kept wondering if this waiting was going to not even allow me, the hero in this story J, to have a fair chance to fight the villain (my leukemia).
The reason for my worry was during the first couple days of my diagnosis everyone was so adamant about how deadly my disease was, and that with each passing day my leukemia would get stronger and as such the patient, me, would become closer to not winning the battle and making it through safely. Speed was of the essence in the first few days, but once I hit purgatory everything grinded to halt.
As you could imagine it was quite confusing and scary. On the one hand I knew that with each day I wasn’t being brought to Princess Margaret to begin my treatment, it meant that leukemia hadn’t taken complete hold and placed me in dire circumstances yet. But on the other hand, with each passing day my leukemia went untreated, it was just being given a chance to get stronger and more deadly and create that much more of an uphill battle once the war began.
Thankfully just like Patrick Swayze, I was given my “pottery moment” in my purgatory. Out of the blue one Saturday morning the doctor came into the room and told Amy and I, that he had ordered me a transfusion of blood for the morning. Once I received that, my blood counts would be high enough that he felt safe giving me a 2 hour day pass to leave the confines of what was slowly becoming my prison, the hospital.
This was my chance to go home and see Dora. I hadn’t seen her in over a week, and what made it worse was I never got to say goodbye to her. In addition, I knew once I was taken to PMH for treatments it would be a minimum of another 4 weeks before I would see her, if ever. Amy never liked the “if ever” part, but the reality is in-hospital leukemia treatments, both induction and transplant, are some of the most dangerous procedures you can undertake with frighteningly scary survival statistics.
As the transfusion was finishing up, I was basically running out the hospital door with a nurse in tow capping off my Hickman line; I couldn’t wait to go home and see Dora. Amy was very careful on the drive home as I was still very tender from the Hickman procedure and the potholes and bumps in the road really hurt, but nothing was stopping my from seeing my kitty.
To this day I will never forget when I got home and saw Dora for the first time. I picked her up and she just stayed in my hands snuggling against me, purring, and kissing my face.
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| Dora and I reunite |
I didn’t do much with my “Freedom” pass. I literally just lay down in my lazy boy and passed out. The best part was Dora cuddled with me the entire time. I think Dora and I were combining energies and strength as we slept so that I would have the strength and fortitude to win my battle and come back home.
The end of the visit came much faster than I would have liked, and leaving Dora was extremely difficult and bittersweet. I was so happy to have seen her but it was so hard leaving her to go back into my purgatory, knowing I wouldn’t see her again for a long time.
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| our nap together |
The rest of my time at Trillium was spent waiting, worrying, and trying to throw a little fun in there to. I knew that once I started chemotherapy my diet was going to drastically change, so I ate as much pizza, fried chicken, and red lobster garlic buns as my tummy could handle. J
It was also during this time where I got to spend some low stress time with family and friends before starting induction. We even got to celebrate a family Valentine’s Day celebration in the hospital. What made it even better was instead of going out to a restaurant for dinner like most years, we had pizza and fried chicken for dinner. I couldn’t have been happier J
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| the final surprise rose |
I had a little help for Valentine’s Day itself, so that I could surprise Amy. My good friend Jonathan snuck into the room after his night shift while we were still sleeping and left a dozen roses for her for me. Flowers were kind of frowned upon in this ward but for this one day I wanted her to have her flowers and be surprised J
A week had now gone by since I had finished my “homework” procedures and entered into my purgatory and still no word yet. We were now not only starting to get antsy, but pissed as well. When Amy and I got up that morning we had had enough. We had been the quiet patient for too long and it was time for a change. We were going to a hospital that day to start my treatment whether it was at MacMaster or Princess Margaret, there was no more “Mr nice and quiet patient”.
We talked to the Nurse Practioner we had gotten close with (who just so happened to have some connections at PMH) and explained our worries, doubts, issues, and logic. We weren’t rude, just direct and honest. We truthfully didn’t expect too much to come of our chat with her as Amy left after to go take care of Dora and do some errands at home. Within an hour of her leaving though, the staff came in and asked why I wasn’t packed yet; my bed at PMH would be ready in 2 hours.
I ran to the phone to tell Amy the great news and so she could get back to the hospital in time for us to leave and I began packing. Those two hours went by so fast, and by the time Amy got back to the room, I was completely packed, sitting dressed ready to go; I was so excited.
We said our goodbyes, packed the car, and off we went to PMH to tackle the next leg of my “Journey Back to Life”; thus ending my week living in purgatory.
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