I'm having a good week so far. Since I finished my antibiotics my nausea has been better and I've enjoyed a day or two with very little upset stomach. My sister Ruth-Ann also decided to spend her only week of holidays this summer with her sickly brother. I'm actually not that sickly right now but her visit was originally planned for her to be here during my bad week, the last day or so of chemo week and the days following. But because chemo was pushed back a week we will have a nicer visit instead. So she got in on Monday morning and heads home on Friday evening.
Today is day 1 of cycle 2 so as I write this I'm getting my nausea drugs pumped into me before they pump in the poison. The good news is that they are pumping them in via my brand new picc line. I'm going to describe that for anyone who might be interested. If you have a weak stomach you should skip to the next paragraph."PICC" stands for "peripherally inserted central catheter". Again, the advantage of a picc is that they put it in once and then all my chemo and blood work goes through that, no more needle pokes, etc. I showed up yesterday morning and the first thing they did was give me an ativan (anxiety pill) to take the edge off because they know I'm not so good with the needles. Then once that had taken effect they brought me back and I got changed into a gown and lied down on a gurney. Then the nurse used an ultrasound machine to find one of the two major veins running through my upper arm. Once she found it she marked marked the spot with a straw. That's right, she used a drinking straw to make a circle on the surface of my skin. Pretty low tech but because of the ultrasound gel, markers don't work. Then the nurse injected some anesthetic to freeze my arm. Once that had taken effect she inserted a needle and fed a tube into the vein all the way around my shoulder, across my chest and down to where the vein meets my heart. Pretty cool. They had pre-measured how long that distance was using a measuring tape like a tailor but only an x-ray can tell if they got it right. They have a window of about an inch or so. It can't be too close or too far from the heart. So I got an x-ray which showed it was exactly where is was supposed to be. The whole process of having a 43 cm tube put in my body wasn't that bad at all. The only thing I felt was the needle prick from the freezing which was no worse than the other 50 needle pokes I've had in the last month.
After the picc I had an appointment with my oncologist. We talked about all the changes they had planned for this cycle which will hopefully keep me from getting severe nausea and dehydration. I get a new pill to take on chemo days which is upwards of $100 a shot. Only those who will really benefit from this drug get it and thankfully I've been deemed worthy. Plus I get the new nausea drugs which were added at the end of last cycle. I will also be getting fluid by IV on days 4, 5, 6 and 7 so that should help. And on days 9 and 16 when I've been getting the headaches and fever/chills they're going to add a strong steroid to help with those side effects. And lastly, so I hopefully don't end up in the hospital again, I will be getting neupogen injections over 5 days following my chemo week to help my bone marrow pump out white blood cells. These $1400.00 injections are luckily covered by Pharmacare but bring with them their own side effects: low grade fever, bone pain, etc. And the best part is that Adrienne has to give them to me at home. Just one more thing Adrienne will do for me during all of this. In sickness and in health right? I don't think Adrienne realized there would be so much sickness when she bought a ticket on the Patty train 4 years. Thank you wife!
That's enough rambling for now. Thanks again for the calls, cards, texts, emails, facebook messages, and blog comments. I've received a ton and responded to very few. My goal is to get back to everyone when this is over.
Wednesday, August 31, 2011
Tuesday, August 23, 2011
Day 21 - This is a long one
Once again it's been a while since I've blogged. This time it's because there is no wi-fi for patients at The Grace hospital. It's 5 PM on Tuesday and I just got home a few hours ago from my 5 night and 4 1/2 day stay there. Here's the story:
I had started getting some minor chills early last week. I would take a Tylenol and they would go away, no big deal. On Thursday (Day 16) Adrienne and I went to Cancer Care for my Bleomycin which again I get on Days 2, 9 and 16. I finished around 5 PM and Adrienne and I picked up Anthony from her parents house, grabbed some takeout and headed home. I was feeling fine until we pulled into the garage when I started getting some shivers and shakes. Within 10 minutes I was shaking so badly I could barely hang on to the Tylenol bottle to take one. It was the worst bout of shakes I've ever experienced. I got in bed and Adrienne piled on the blankets and took my temperature which was 37 degrees C. In the next half an hour my shaking settled down but my fever skyrocketed to 39.3 degrees. I took another extra strength Tylenol for a total of 1000mg and my fever came down to 38.6 a little while after that. This was still too high as a chemo patient so Adrienne called the on-call oncologist. He spoke to my doctor who happened to also be on-call. When the doctor called back he told me to go to the emergency room right away and he would call ahead to let them know that I was coming. The fever could be a side affect of the Bleomycin but the fear was that it could also be an infection. And because it was day 16 of my chemo treatment my white cell count could potentially be low and therefore if it was an infection my body would have no way to fight it.
We called Phil and Christina (Adrienne's brother and his wife) and they came over right away to stay with Anthony while we went to the hospital. Phil drove me to the hospital because Adrienne was putting Anthony to bed when they got here. She met me later.
I got to the emergency room around 9 PM ish. I "Checked In" and saw the triage nurse. I waited for about 3 minutes before I was brought in for blood work and chest X-ray. Then I was brought right back into the room where I would spend the night. If you want good service in the emergency room go in as a chemo patient with a 39 degree fever. I bumped everybody there which I felt bad about but I also didn't want to get there germs if I didn't have any white cells so I didn't feel that bad.
Around 11:30 PM I got news that my white cell count was extremely low (.3 where 3.5-11 is normal). Because of that I was put on IV antibiotics just in case I had an infection and was told I would be staying for the night and admitted to the hospital in the morning. Adrienne went home for the night and I spent the rest of the night on a stretcher in a private room. I was also in "reverse isolation" meaning anyone who came in the room had to where a mask, gown and gloves so no one could make me sick.
My fever came back to normal over night and at around 9 AM I was admitted and wheeled up to the 3rd floor. Again I was put in a private room and labelled "reverse isolation". The room was as good as it gets with a flat screen TV which was free, a fridge and a microwave. The only bad thing was that I wasn't allowed to leave the room, but with no immune system I was happy to comply.I was told that as long as my fever didn't spike again and my blood work didn't show any bacterial infections that I would most likely go home the next day.
On Friday evening my fever again spiked to 38.8 which guaranteed me another 24-48 hours in the hospital. My blood cultures were also repeated to look for infection because none had shown up yet.
On Saturday the new cultures showed a "staph" bacterial infection. This meant I would be in the hospital for longer again and a new antibiotic was started to make sure they covered all the bases. They wouldn't know if I was getting the right antibiotic until the "sensitivities" came back showing exactly what kind of staph bacteria it was.
By Sunday my white cell count was high enough that I felt safe having Anthony visit so Adrienne and Anthony came by for 2 visits that day. Fr. Gerald also stopped by in the morning for a visit.
On Monday my doctors discussed my case with my oncologist and he said as soon as my neutrophils reached a certain level that I could switch from IV antibiotics to oral antibiotics and 24 hours after that I could go home if I hadn't spiked another fever. There was also a new doctor on at the hospital that wanted me to get an Echo Cardiogram. This is an ultrasound of my heart to make sure the infection hadn't moved into the valves of my heart. This wasn't a good news day. My neutrophils were so low that I thought I would be in the hospital for at least a few days before they would be back in the normal range and then I thought I was potentially going to have to get my heart valves replaced. I wasn't a happy person on Monday morning. It was later explained to me more clearly that the likely hood of the infection moving to my heart was very low and that it was treatable. Only in extreme cases would replacement of heart valves be required.
Today was much better. I found out from the doctors during their rounds that my neutrophils were back to where they needed to be so I would most likely get out of the hospital on Wednesday after I had my Echo Cardiogram. Then a few minutes later the attending physician came in and said that things had changed. The sensitivities came back and I had a different form of staph infection than they had suspected so no Echo cardiogram would be required and that I could go home after lunch.
So as promised at 1 PM the nurse took out my IV and gave me my discharge instructions. Christina came and picked me up because Adrienne had Anthony who was napping. Thanks again Christina. And here I am at home once again.
I knew Chemo would have side affects, I just figured I wouldn't experience 90% of them during the first cycle. I still have a few left to experience, or hopefully not experience. The good news is that as of today my first cycle is over and I am 1/3 finished, kind of. Cycle 2 was supposed to start tomorrow but because of this whole fiasco I get a reprieve for 1 week. I go back to clinic next Tuesday for more blood work and to see my oncologist. I also hope to get my picc line installed next Tuesday so for the rest of chemo I don't get poked. If I had had one this week it would have saved me about 15 needle pokes between chemo, IVs and blood tests.
That's all for now. I probably won't post anything else until chemo is back on next week. Thanks again for your thoughts and prayers, I appreciate it!
I had started getting some minor chills early last week. I would take a Tylenol and they would go away, no big deal. On Thursday (Day 16) Adrienne and I went to Cancer Care for my Bleomycin which again I get on Days 2, 9 and 16. I finished around 5 PM and Adrienne and I picked up Anthony from her parents house, grabbed some takeout and headed home. I was feeling fine until we pulled into the garage when I started getting some shivers and shakes. Within 10 minutes I was shaking so badly I could barely hang on to the Tylenol bottle to take one. It was the worst bout of shakes I've ever experienced. I got in bed and Adrienne piled on the blankets and took my temperature which was 37 degrees C. In the next half an hour my shaking settled down but my fever skyrocketed to 39.3 degrees. I took another extra strength Tylenol for a total of 1000mg and my fever came down to 38.6 a little while after that. This was still too high as a chemo patient so Adrienne called the on-call oncologist. He spoke to my doctor who happened to also be on-call. When the doctor called back he told me to go to the emergency room right away and he would call ahead to let them know that I was coming. The fever could be a side affect of the Bleomycin but the fear was that it could also be an infection. And because it was day 16 of my chemo treatment my white cell count could potentially be low and therefore if it was an infection my body would have no way to fight it.
We called Phil and Christina (Adrienne's brother and his wife) and they came over right away to stay with Anthony while we went to the hospital. Phil drove me to the hospital because Adrienne was putting Anthony to bed when they got here. She met me later.
I got to the emergency room around 9 PM ish. I "Checked In" and saw the triage nurse. I waited for about 3 minutes before I was brought in for blood work and chest X-ray. Then I was brought right back into the room where I would spend the night. If you want good service in the emergency room go in as a chemo patient with a 39 degree fever. I bumped everybody there which I felt bad about but I also didn't want to get there germs if I didn't have any white cells so I didn't feel that bad.
Around 11:30 PM I got news that my white cell count was extremely low (.3 where 3.5-11 is normal). Because of that I was put on IV antibiotics just in case I had an infection and was told I would be staying for the night and admitted to the hospital in the morning. Adrienne went home for the night and I spent the rest of the night on a stretcher in a private room. I was also in "reverse isolation" meaning anyone who came in the room had to where a mask, gown and gloves so no one could make me sick.
My fever came back to normal over night and at around 9 AM I was admitted and wheeled up to the 3rd floor. Again I was put in a private room and labelled "reverse isolation". The room was as good as it gets with a flat screen TV which was free, a fridge and a microwave. The only bad thing was that I wasn't allowed to leave the room, but with no immune system I was happy to comply.I was told that as long as my fever didn't spike again and my blood work didn't show any bacterial infections that I would most likely go home the next day.
On Friday evening my fever again spiked to 38.8 which guaranteed me another 24-48 hours in the hospital. My blood cultures were also repeated to look for infection because none had shown up yet.
On Saturday the new cultures showed a "staph" bacterial infection. This meant I would be in the hospital for longer again and a new antibiotic was started to make sure they covered all the bases. They wouldn't know if I was getting the right antibiotic until the "sensitivities" came back showing exactly what kind of staph bacteria it was.
By Sunday my white cell count was high enough that I felt safe having Anthony visit so Adrienne and Anthony came by for 2 visits that day. Fr. Gerald also stopped by in the morning for a visit.
On Monday my doctors discussed my case with my oncologist and he said as soon as my neutrophils reached a certain level that I could switch from IV antibiotics to oral antibiotics and 24 hours after that I could go home if I hadn't spiked another fever. There was also a new doctor on at the hospital that wanted me to get an Echo Cardiogram. This is an ultrasound of my heart to make sure the infection hadn't moved into the valves of my heart. This wasn't a good news day. My neutrophils were so low that I thought I would be in the hospital for at least a few days before they would be back in the normal range and then I thought I was potentially going to have to get my heart valves replaced. I wasn't a happy person on Monday morning. It was later explained to me more clearly that the likely hood of the infection moving to my heart was very low and that it was treatable. Only in extreme cases would replacement of heart valves be required.
Today was much better. I found out from the doctors during their rounds that my neutrophils were back to where they needed to be so I would most likely get out of the hospital on Wednesday after I had my Echo Cardiogram. Then a few minutes later the attending physician came in and said that things had changed. The sensitivities came back and I had a different form of staph infection than they had suspected so no Echo cardiogram would be required and that I could go home after lunch.
So as promised at 1 PM the nurse took out my IV and gave me my discharge instructions. Christina came and picked me up because Adrienne had Anthony who was napping. Thanks again Christina. And here I am at home once again.
I knew Chemo would have side affects, I just figured I wouldn't experience 90% of them during the first cycle. I still have a few left to experience, or hopefully not experience. The good news is that as of today my first cycle is over and I am 1/3 finished, kind of. Cycle 2 was supposed to start tomorrow but because of this whole fiasco I get a reprieve for 1 week. I go back to clinic next Tuesday for more blood work and to see my oncologist. I also hope to get my picc line installed next Tuesday so for the rest of chemo I don't get poked. If I had had one this week it would have saved me about 15 needle pokes between chemo, IVs and blood tests.
That's all for now. I probably won't post anything else until chemo is back on next week. Thanks again for your thoughts and prayers, I appreciate it!
Wednesday, August 17, 2011
Day 15 - From Balding to Bald
Adrienne, Anthony and I went to Urban Shear today so that Anthony could get his first haircut and I could get my last hair cut, for a while. Anthony loved it! He got up in the chair and sat still while Glennis cleaned him up. Then he watched me get mine buzzed. He also got to sweep the hair up at the end. I don't know if most little boys like sweeping but it was probably his favourite part.
Here are some pics...
Here are some pics...
Monday, August 15, 2011
Day 13 - I think I've rounded the corner on cycle 1
I started to feel a bit like myself again last night. It's taken a lot of water and chicken fingers but I'm definitely feeling better. I still have the ringing in my ears. It's not even the constant ringing that bothers me as much as that I feel like I live in a battle zone. When people talk I feel like they're yelling, when a car drives by It sounds like a tank, if someone lays a pot on the counter it sounds like they threw it on the floor. And the other annoying symptom is the migraine style headache I have shooting from behind my eyes. So if you come to visit, use your indoor voice please.
And the most recent development is that the chemo is showing how it kills cells. How so? My hair started coming out in clumps today. Not everyone that does chemo loses their hair but I knew with my regiment it would happen sometime around day 14-16 for sure. Reading other's blogs and stories has given me a real sense of what to expect which is reassuring as this all unfolds. Don't get me wrong, I wasn't prepared for how dehydrated I became and how much that affected me (or is still affecting me) but most things have been expected. Whether I lose my body hair or not is still to be determined. None of it bothers me too much, I didn't exactly have a hairline to brag about anyway. The one thing that is probably going to freak me out is looking in the mirror and seeing a skinny bald guy. Although I'm not that skinny yet I guess, I've lost 14 lbs now but I still have a gut. It's always good to have a little weight on for a rainy day.
And the most recent development is that the chemo is showing how it kills cells. How so? My hair started coming out in clumps today. Not everyone that does chemo loses their hair but I knew with my regiment it would happen sometime around day 14-16 for sure. Reading other's blogs and stories has given me a real sense of what to expect which is reassuring as this all unfolds. Don't get me wrong, I wasn't prepared for how dehydrated I became and how much that affected me (or is still affecting me) but most things have been expected. Whether I lose my body hair or not is still to be determined. None of it bothers me too much, I didn't exactly have a hairline to brag about anyway. The one thing that is probably going to freak me out is looking in the mirror and seeing a skinny bald guy. Although I'm not that skinny yet I guess, I've lost 14 lbs now but I still have a gut. It's always good to have a little weight on for a rainy day.
So Wednesday is the big buzz cut. I think we'll take Anthony for a trim as he has a little lopsided mullet going and Dad will get it all shaved off. Hopefully this way Anthony won't be traumatized when I come home with no hair. In the meantime, below is the last family pic, for a while anyway, in which I will have hair.
Saturday, August 13, 2011
Day 11 - Hydration
So I really felt like I was on the mend when writing my last entry, which makes me a little hesitant to write similar comments today. After writing my day 9 entry I continued to feel a bit better for a few hours but that all changed in the afternoon. Being day 9 I had to go get my Bleomycin. The car ride was a struggle but we made it there OK. I got the bleo which only takes 10 minutes and the nurse also gave me a small bag of fluid by IV because I had been feeling so crappy. On the way home I got a wicked headache and stiffness in my neck which I'm still fending off with extra strength Tylenol. Overnight I started throwing up and by morning I felt the worst that I had felt so far. My clinic nurse called to check on me and between her and Adrienne they set me up to get back into the hospital yesterday afternoon for more nausea drugs and hydration. Adrienne had to practically get me dressed and into the car. Thankfully, and as usual, her parents took Anthony for the rest of the day so we could go spend another afternoon in the hospital.
The nurses got me in right away and hooked me up. I got some nausea drugs and a big bag of fluid over the course of a few hours and was back home in bed by 6 PM. I also got a new prescription for nausea drugs, ondansetron. The pills are $11 a pop (thank you health plan) but seem to be working much better. The whole experience I will remember as my least favourite part of chemo so far but if my wonderful wife didn't force me out of bed and to the hospital like a drill sargeant I really don't know what kind of state I would be in right now. I've drank a few bottles of Gatorade and water, tried some of another boost this morning and am feeling slightly better. Other than Bleo again on day 16 I have 10 days to just get myself ready for cycle 2. I really hope to be more prepared.
If anyone's looking for a sure fire weight loss technique, try getting dehydrated during chemotherapy. It's helped me lose about 11 lbs this week. Also, in a few days my hair will start falling out which may include my back hair so I should be about ready for the beach with little effort and no waxing required. Maybe a bit late for this summer...
The nurses got me in right away and hooked me up. I got some nausea drugs and a big bag of fluid over the course of a few hours and was back home in bed by 6 PM. I also got a new prescription for nausea drugs, ondansetron. The pills are $11 a pop (thank you health plan) but seem to be working much better. The whole experience I will remember as my least favourite part of chemo so far but if my wonderful wife didn't force me out of bed and to the hospital like a drill sargeant I really don't know what kind of state I would be in right now. I've drank a few bottles of Gatorade and water, tried some of another boost this morning and am feeling slightly better. Other than Bleo again on day 16 I have 10 days to just get myself ready for cycle 2. I really hope to be more prepared.
If anyone's looking for a sure fire weight loss technique, try getting dehydrated during chemotherapy. It's helped me lose about 11 lbs this week. Also, in a few days my hair will start falling out which may include my back hair so I should be about ready for the beach with little effort and no waxing required. Maybe a bit late for this summer...
Thursday, August 11, 2011
Day 9 - The Chemo Party is over
So it's been a while since I've blogged. As you can guess it's because things have not been going too well. I stopped eating for the most part around day 4 or 5 and am still trying to recover from that. I think I kept telling myself that if I could get through the nausia for a little while longer that it would be better and I would eat then. Instead, not eating made everything so much worse. Finally yesterday with Adrienne's help I started to eat a few bites here and there all day. And today I had a Boost for breakfast. I think I'm starting to regain some energy. It's hard to even describe how I feel. I'm tired yet when I take the steroids which are supposed to boost my nausia drugs I feel like I'm crawling out of my skin. I'm weak and light headed from not eating, my ears are ringing from the chemo and I just generally don't feel well. I think next cycle I may have to try some different nausia drugs or maybe some other "medicinal" cures. I'll try anything!
Thank you to my inlaws for bringing me boost and vitamin water, to our friends who came by to have breakfast with Adrienne when she couldn't leave her sickly husband, to our friends who have brought food and again anything else. And thank you to Adrienne for just everything. I think as this goes on Adrienne will either be blogging herself or writing in my blog so that people don't have to wait a week to find out how we're doing. To anyone who has called or emailed and received no response, I apologize. I'll try to touch base with some of you in the next few days. And thanks again for all the messages, etc.
Thank you to my inlaws for bringing me boost and vitamin water, to our friends who came by to have breakfast with Adrienne when she couldn't leave her sickly husband, to our friends who have brought food and again anything else. And thank you to Adrienne for just everything. I think as this goes on Adrienne will either be blogging herself or writing in my blog so that people don't have to wait a week to find out how we're doing. To anyone who has called or emailed and received no response, I apologize. I'll try to touch base with some of you in the next few days. And thanks again for all the messages, etc.
Saturday, August 6, 2011
Day 4
So I woke up this morning with a mild hangover but no good Friday night to show for it. I've now finished 4 of my first 5 big chemo days and it's starting to catch up to me. Days 1 and 2 were fine, almost no symptoms whatsoever. Overnight and in the morning of day 3 I got some mild nausea but nothing a nausea pill and a small bite to eat couldn't fix. But this morning was a bit worse again. I managed a piece of toast before heading out the door this morning but that was about it.
During chemo this morning I started to feel worse. I'm pretty sure it was because my vein decided it was done taking the chemo and started backing up. So mid treatment I had to get a new IV. That was the 3rd in 4 days. Apparently veins, or maybe just my veins, don't like taking chemo drugs for days on end. I am starting to realize that I'm going to either have to get a "picc line" put in or have about 20 IVs run over the next 2 months. Did I mention I hate needles? I hate needles! I lied there in the chair during all this under 2 blankets and I still couldn't stop shaking. It's a weird feeling to describe. I felt a little nausea, a little tired but like I had drank 2 large coffees all at the same time. I guess how you would feel if someone had been pumping heavy metals in liquid form through you for 4 days. To put it in perspective, Adrienne dropped me off and went to go give blood (what a good person my wife is) and on the way back offered to bring me an ice cream which I said no to. It's the first time during treatment I've denied myself ice cream but the thought of it made my stomach tumble.
I came home and slept away the afternoon. It's 9 PM now and I feel significantly better. I'm hoping tomorrow will go a little easier. I still can't complain, my oncology nurse told me I would feel "extremely unwell" during the five days of chemo and for a day or 2 later and I wouldn't say I feel that way yet. But again I know it gets worse with each cycle. I also have to keep reminding myself that no matter how crappy I may feel that in 9 weeks there is a 98% chance that I'm cured. I sit there all day surrounded by people who would give anything for those odds. There are some people who are just doing chemo as a preventative measure and others I've talked to who have been given 10% survival odds. One such lady I chatted with yesterday said she never knew how many good friends she had until her diagnosis a few months ago. I feel the same way. A piece of advise she gave me was that you can't go back and live your life over again, you can just go out with a bang. I hope to go out with a bang for the next 60 years after all this is over.
During chemo this morning I started to feel worse. I'm pretty sure it was because my vein decided it was done taking the chemo and started backing up. So mid treatment I had to get a new IV. That was the 3rd in 4 days. Apparently veins, or maybe just my veins, don't like taking chemo drugs for days on end. I am starting to realize that I'm going to either have to get a "picc line" put in or have about 20 IVs run over the next 2 months. Did I mention I hate needles? I hate needles! I lied there in the chair during all this under 2 blankets and I still couldn't stop shaking. It's a weird feeling to describe. I felt a little nausea, a little tired but like I had drank 2 large coffees all at the same time. I guess how you would feel if someone had been pumping heavy metals in liquid form through you for 4 days. To put it in perspective, Adrienne dropped me off and went to go give blood (what a good person my wife is) and on the way back offered to bring me an ice cream which I said no to. It's the first time during treatment I've denied myself ice cream but the thought of it made my stomach tumble.
I came home and slept away the afternoon. It's 9 PM now and I feel significantly better. I'm hoping tomorrow will go a little easier. I still can't complain, my oncology nurse told me I would feel "extremely unwell" during the five days of chemo and for a day or 2 later and I wouldn't say I feel that way yet. But again I know it gets worse with each cycle. I also have to keep reminding myself that no matter how crappy I may feel that in 9 weeks there is a 98% chance that I'm cured. I sit there all day surrounded by people who would give anything for those odds. There are some people who are just doing chemo as a preventative measure and others I've talked to who have been given 10% survival odds. One such lady I chatted with yesterday said she never knew how many good friends she had until her diagnosis a few months ago. I feel the same way. A piece of advise she gave me was that you can't go back and live your life over again, you can just go out with a bang. I hope to go out with a bang for the next 60 years after all this is over.
Wednesday, August 3, 2011
One down, sixty two to go.
I've gotten quite a response from the blog, more than I would have ever thought. Lots of family and friends I haven't seen or spoken to in years have been commenting, sending facebook messages or calling. I appreciate every single one, thanks very much! I did forget to mention thus far that I have an excellent prognosis though. Meaning that even though the cancer has spread to my lymph nodes it is still curable 98% of the time. Not too many cancer patients can say that so I'm very blessed. So no one needs to lose sleep over this, I will be fine!
I started chemo today. Adrienne and I showed up for my appointment at 9:45. We waited in the waiting area for a while before a nurse came and led us back to the chemo room. Today I got a little private room the size of a walk in closet but tomorrow I may be in a common area with other patients, it depends on what's open. Friends can come and sit with me during the chemo but usually just one at a time because it's pretty cramped and lots of patients try to sleep the time away so big crowds of friends are discouraged.
The process itself was pretty painless. If you don't know how chemo is administered here's a little lesson(this may not be entirely accurate but it's how I understand it to be). Some drugs can be taken in pill form, none of mine can so it's all injected. They can inject the drugs via a "port" which is surgically implanted in your chest. This means fewer needles but can have complications because it's in you for so long. They can also run a "pick line" which is usually inserted into you're upper arm and I think a small tube runs in your vein towards your heart like a port would. This again means fewer needles because they can leave it in for a long time. Or in my case they just run an IV. My chemo is only 9 weeks so this I guess is the best option. I came home today with mine wrapped in gauze and hopefully it will be good for a few days or perhaps all 5. It may get clogged though and then they would have to start a new one tomorrow.
I assumed that because today was my first day that I would get a big orientation, some VIP treatment, all that. My nurse was excellent and answered any questions I had but generally it was all business. I went in, sat down and my nurse started the IV process. She wrapped my arm in hot towels to get my veins nice and fat, went over the drugs and started the IV. The first drugs were for nausea, then a saline flush. Then my cisplatn which is essentially platinum. This is the big one, it kills the cancer. That took an hour or so on top of the nausea drugs which took under a half an hour. Then another saline flush and then the etoposide. That was followed up with another saline flush and then my IV was wrapped up and Adrienne and I busted out of there.
It really wasn't bad at all. There was wi-fi so I could check my email and watch netflix, etc. The volunteers were by often offering juice and cookies, soup for lunch, blankets, etc. Cancer Care Manitoba is really good at what they do. I'm home now hours later and I don't feel any side effects, so day one went well. I know tommorrow can and probably will be very different. As the drugs build up in my system I expect to get more nausea, feel more tired and what ever else comes with it but for now I feel good.
I started chemo today. Adrienne and I showed up for my appointment at 9:45. We waited in the waiting area for a while before a nurse came and led us back to the chemo room. Today I got a little private room the size of a walk in closet but tomorrow I may be in a common area with other patients, it depends on what's open. Friends can come and sit with me during the chemo but usually just one at a time because it's pretty cramped and lots of patients try to sleep the time away so big crowds of friends are discouraged.
The process itself was pretty painless. If you don't know how chemo is administered here's a little lesson(this may not be entirely accurate but it's how I understand it to be). Some drugs can be taken in pill form, none of mine can so it's all injected. They can inject the drugs via a "port" which is surgically implanted in your chest. This means fewer needles but can have complications because it's in you for so long. They can also run a "pick line" which is usually inserted into you're upper arm and I think a small tube runs in your vein towards your heart like a port would. This again means fewer needles because they can leave it in for a long time. Or in my case they just run an IV. My chemo is only 9 weeks so this I guess is the best option. I came home today with mine wrapped in gauze and hopefully it will be good for a few days or perhaps all 5. It may get clogged though and then they would have to start a new one tomorrow.
I assumed that because today was my first day that I would get a big orientation, some VIP treatment, all that. My nurse was excellent and answered any questions I had but generally it was all business. I went in, sat down and my nurse started the IV process. She wrapped my arm in hot towels to get my veins nice and fat, went over the drugs and started the IV. The first drugs were for nausea, then a saline flush. Then my cisplatn which is essentially platinum. This is the big one, it kills the cancer. That took an hour or so on top of the nausea drugs which took under a half an hour. Then another saline flush and then the etoposide. That was followed up with another saline flush and then my IV was wrapped up and Adrienne and I busted out of there.
It really wasn't bad at all. There was wi-fi so I could check my email and watch netflix, etc. The volunteers were by often offering juice and cookies, soup for lunch, blankets, etc. Cancer Care Manitoba is really good at what they do. I'm home now hours later and I don't feel any side effects, so day one went well. I know tommorrow can and probably will be very different. As the drugs build up in my system I expect to get more nausea, feel more tired and what ever else comes with it but for now I feel good.
Monday, August 1, 2011
The History (most entries will be pretty short, this one is long...feel free to just read the short version)
Today is August 1st, 2011. I start chemotherapy in 2 days on August 3rd and have decided to blog about it. Why? First, I have found reading other's experiences very helpful while going through this so maybe I can help someone else. And second, I'm not a facebooker or tweeter so this is a way to keep family and friends up to date on how I'm doing. If you have found my blog feel free to forward it to anyone you think might be interested.
Anyway, here's the series of events which has brought me to this place...
The short version:
Oct 20th, 2010- woke up with huge testicle
Jan 2011 - Diagnosed with Testicular Cancer
Feb 1, 2011 - Right Radical Orchiectomy (Cancerous testicle removed)
Pathology indicated Pure Classic Invasive Seminoma (this is a good thing)
Oncologist recommends Surveillance (monitoring with blood work every 2 months and CT scan every 4)
July 2011 - CT scan shows retroperiteneal lymph nodes at 1.3 cm (up from 9mm in previous scans). Oncologist recommends treatment. Option 1: Radiation Option 2:Chemotherapy
Chemotherapy to begin on August 3rd, 2011.
The very,very long version:
I woke up on October 20th, 2010 with a huge right testicle. This is unusual for testicular cancer so it may have been growing for a while and I hadn't noticed but I don't think so. It wasn't a grapefruit or anything but it was pretty impressive. I know by the time it came out it was the size of a large egg but I can't remember exactly how big it was when I noticed it.
I went to work and asked a few guys if they'd ever woken up with a monster nut. No one had. That was all I needed to hear, I for sure had TC. I gave it a few days but when it didn't go back to normal I called my doctor and his receptionist got me in very quickly (a couple of days later I think).
He examined me and said it could be a number of things. He started me on antibiotics, ordered an ultrasound and blood work, and referred me to a urologist. Three weeks later the antibiotics had had no effect and I hadn't even received a notification as to when my ultrasound would be. I had done some reading and found out that the average wait time for an ultrasound at The Grace Hospital (the hospital closest to me here in Winnipeg) is 9 weeks. So I potentially had cancer but wouldn't know for sure for months. I called my doctor and his receptionist could tell I was very concerned so she squeezed me in to see him that morning which was awesome. When I saw him an hour later he prescribed another 2 weeks of antibiotics just to be sure. I also told him that I would not be waiting 9 weeks for the ultrasound but planned to drive over the border to Grand Forks, ND where I could pay about $800 to have the ultrasound done and read within a few days. He called the Grace Hospital and had me moved from the "urgent" list to the emergency list for my ultrasound and by the time I got home there was a message with my appointment for the following week so I decided not to head to the US.
The ultrasound wasn't as bad as I thought. I know that there's nothing physically invasive about an ultrasound but the thought of someone gelling up my nuts and poking around down there for a half an hour didn't appeal to me (8 months later and lots of poking around down there later I couldn't give 2 shits anymore). I returned to my Dr. a week or so later for the results. He said I did NOT have cancer but simply a Varicocele which is very common (1 in 10 men will get one) and unless it is causing pain they are often not even fixed which would require minor surgery. This was awesome (unfortunately very inaccurate) news. The report ,which I didn't actually read, recommended an abdominal CT scan to ensure that "there were no other issues in my belly" which could be causing this condition. After doing a little reading I was convinced this condition was caused by advanced Kidney Cancer. Thank you Internet!
My CT scan happened about 3-4 weeks later during the week before Christmas. Because of this I wouldn't find out that the results had come back normal until the first week of January. I tried not to think about it over Christmas and during a trip to Vegas right after Christmas with my wife Adrienne (our first trip away together since our son Anthony was born in Oct 2009) but it was always in the back of my mind.
So I went to my Urologist appointment on the last Friday of January pretty relaxed knowing I had a minor condition which may or may not require a minor surgery to correct. That changed pretty quickly when he read my ultrasound report, underlined the term "malignancy", slid it across the table and asked me if I knew what that term meant? I did. It meant cancer. Then I read the whole line: The diagnosis of exclusion is malignancy. "So...does that mean malignancy is excluded then, as in, I do not have cancer"? "No, that means that by excluding everything else that it could be, that malignancy is the preliminary diagnosis". This can't be positively confirmed until the testicle is removed and the pathology is done though. I insist that my GP told me I did not have cancer. The urologist then decides the best way to proceed is to examine me. I'm happy to hear that I have a perfectly normal looking left testicle, perfectly normal looking penis but one huge right testicle which screams testicular cancer. He wants to remove it on Tuesday. I ask if we can wait until the following Friday because my in laws will be back from out of town and can watch my son. He said we can, but he doesn't think it's a good idea. I don't argue. He then sends me for more blood work, chest xray and an ECG and schedules surgery for Tuesday afternoon. This seems really fast but anyone who knows anything about testicular cancer knows that's how it works. Get the cancer out before it can spread.
Side note: The ultrasound report talked about cancer but the last line which is usually the diagnosis line described the varicocele. So I'm thinking my GP obviosly skimmed the report without reading the whole thing but it was also a confusing report apparently.
Adrienne and I met my urologist at his office late Tuesday morning to finish the paperwork and then headed staright over to the hospital for the surgery which would happen at the end of the day as long as they could fit me in.
I was admitted and was wheeled down for surgery a few hours later. When I got down to the surgery department my urologist was waiting in his scrubs. We chatted, he wrote something on my scrotum with a permanent marker, the anesthesiologist gave me the low down on what he would be doing and then it was into the operating room. I wasn't too nervous about the whole thing until I saw the operating room full of people, the stark walls and metal lights, etc. My urologist chatted with me, I'm pretty sure to distract me, until the anesthesia kicked in and I was out.
My memory of recovery is pretty vague. When I woke up, a nurse was at my side immediately and asked if I had any pain. I remember feeling the incision but the pain wasn't terrible. She gave me some morphine and I don't remember too much after that. I remember Adrienne stayed with me for a while and then had to go home because visiting hours were over and we did have a son at home.
A note of thanks to our friend Diana who took the day off work to watch Anthony in the afternoon and who came to the hospital afterward to stay with Adrienne while I was having surgery. Thanks also to Phil and Christina for taking care of Anthony that evening and all the other days and evenings since. To our friends who visited, brought food and/or helped out in any way. To Adrienne's Mom and Dad for anything and everything you do for us on any given day! And to Adrienne who has been great through all of this. Thank you in advance for looking after me during chemo. Back to the story...
I spent the rest of the evening trying to pee. If you don't pee within 6 hours of your surgery they start a catheter. I drank a ton of water but my brain is just not wired to pee lying down so finally I got the nurses to shoot me full of morphine and I stood up and finally peed with only a half an hour to spare.
I spent the rest of the night in the hopsital which isn't typical after an orchiectomy. Usually you spend about 6 hours and then you go home. My 6 hour mark would have been at 11PM so I just stayed over night. I was also having quite a bit of pain and the nurses figured it was better to stay at the hospital than rush home where Anthony would be jumping all over me. I think it was late afternoon the day after the surgery when I got home. The pain wasn't crazy but it was what you would expect from a 4 inch incision in the groin. That's right, if you thought they removed the testicle with a little cut in the scrotem you would be wrong. You see, the testicle empties into lymph nodes in the back but the scrotem empties into lymph nodes throughout the body so they don't want to disturb the cancer in there. Instead they make a big cut in your groin up to just under the waistline running parallel with the crease where your leg meets the groin. Then they push the testicle up and out through that and cut it off outside the body. When I read the detailed surgery report I almost passed out. Anyway, what was I talking about? Oh ya, recovery. I was in bed for 3 or 4 days and then slowly got back on my feet over the next week or so. I saw my urologist a week and a half after surgery and got my 18 staples removed. That wasn't fun but it was quick. I also healed better once the staples were out. My pathology report wasn't back yet but the Dr. actually called me later that day with the results. The cancer was confirmed as Pure Classic Invasive Seminoma that showed no signs of chord invasion. This basically meant that I had the better or more easily treatable type of testicular cancer which showed no sign of spread up the spermatic chord. This was good news.
My urologist said that Cancer Care would take it from here. He figured I would meet with my oncologist in about 3 weeks and if any treatment was required it would probably start about 3 weeks after that. He also said they would be in no hurry to see me because my tumour markers before the surgery were not elevated, the CT scan was normal and the type of cancer I had was slow growing and it looked like they got it all. This was a Friday. I was surprised when Cancer Care called me on Monday and wanted to see me on Tuesday. This worried me. It turns out that one of my tumour markers was slightly elevated and that the CT scan showed some lymph nodes that were on the high end of normal, 9mm where anything under 1cm is normal. So more bloodwork and another CT scan. I met with my oncologist a few weeks later and found out that my tumour marker was back to normal and my suspect lymph nodes had not grown. So my Dr. recommended surveillance, meaning more bloodwork in 2 months and another CT scan with more bloodwork in 4 months.
The 2 month bloodwork was fine. That brings us to my 4 month CT scan which I had done on July 6th. It showed that the suspect lymph nodes had grown to 1.3 cm. This pretty much confirms the presence of cancer in my Retroperiteneal Lymph nodes. This is typically where testicular cancer spreads after the testicle. If not treated it will spread most likely to the lungs and then to places like the brain, the liver, etc. And so my oncologist recommended treatment which could either be radiation or chemotherapy. The side effects of chemo aren't great but the long term effects of radiation are potentially other forms of cancer. They would have to radiate through my organs, bowls, etc to get to the affected lymph nodes. Also, there's a chance they could miss a lymph node and then I'm no better off. Chemotherapy would be a longer process but would kill the cancer anywhere in the body and the long term side effects seemed better.
And so I am set to begin 3 cylces of BEP on August 3rd. BEP means bleomycin, etoposide and cisplaten. The cycles are 21 days long. I will receive all three drugs on days 1-5 ( I believe) and just bleomycin on days 9 and 16. I've read about the drugs and lots of blogs by others that have gone through it. I am not looking forward to it but at least it's pretty short compared to most chemo's.
That's it for now. I plan to post short comments every few days as long as I'm feeling up to it. We'll see how it goes.
Anyway, here's the series of events which has brought me to this place...
The short version:
Oct 20th, 2010- woke up with huge testicle
Jan 2011 - Diagnosed with Testicular Cancer
Feb 1, 2011 - Right Radical Orchiectomy (Cancerous testicle removed)
Pathology indicated Pure Classic Invasive Seminoma (this is a good thing)
Oncologist recommends Surveillance (monitoring with blood work every 2 months and CT scan every 4)
July 2011 - CT scan shows retroperiteneal lymph nodes at 1.3 cm (up from 9mm in previous scans). Oncologist recommends treatment. Option 1: Radiation Option 2:Chemotherapy
Chemotherapy to begin on August 3rd, 2011.
The very,very long version:
I woke up on October 20th, 2010 with a huge right testicle. This is unusual for testicular cancer so it may have been growing for a while and I hadn't noticed but I don't think so. It wasn't a grapefruit or anything but it was pretty impressive. I know by the time it came out it was the size of a large egg but I can't remember exactly how big it was when I noticed it.
I went to work and asked a few guys if they'd ever woken up with a monster nut. No one had. That was all I needed to hear, I for sure had TC. I gave it a few days but when it didn't go back to normal I called my doctor and his receptionist got me in very quickly (a couple of days later I think).
He examined me and said it could be a number of things. He started me on antibiotics, ordered an ultrasound and blood work, and referred me to a urologist. Three weeks later the antibiotics had had no effect and I hadn't even received a notification as to when my ultrasound would be. I had done some reading and found out that the average wait time for an ultrasound at The Grace Hospital (the hospital closest to me here in Winnipeg) is 9 weeks. So I potentially had cancer but wouldn't know for sure for months. I called my doctor and his receptionist could tell I was very concerned so she squeezed me in to see him that morning which was awesome. When I saw him an hour later he prescribed another 2 weeks of antibiotics just to be sure. I also told him that I would not be waiting 9 weeks for the ultrasound but planned to drive over the border to Grand Forks, ND where I could pay about $800 to have the ultrasound done and read within a few days. He called the Grace Hospital and had me moved from the "urgent" list to the emergency list for my ultrasound and by the time I got home there was a message with my appointment for the following week so I decided not to head to the US.
The ultrasound wasn't as bad as I thought. I know that there's nothing physically invasive about an ultrasound but the thought of someone gelling up my nuts and poking around down there for a half an hour didn't appeal to me (8 months later and lots of poking around down there later I couldn't give 2 shits anymore). I returned to my Dr. a week or so later for the results. He said I did NOT have cancer but simply a Varicocele which is very common (1 in 10 men will get one) and unless it is causing pain they are often not even fixed which would require minor surgery. This was awesome (unfortunately very inaccurate) news. The report ,which I didn't actually read, recommended an abdominal CT scan to ensure that "there were no other issues in my belly" which could be causing this condition. After doing a little reading I was convinced this condition was caused by advanced Kidney Cancer. Thank you Internet!
My CT scan happened about 3-4 weeks later during the week before Christmas. Because of this I wouldn't find out that the results had come back normal until the first week of January. I tried not to think about it over Christmas and during a trip to Vegas right after Christmas with my wife Adrienne (our first trip away together since our son Anthony was born in Oct 2009) but it was always in the back of my mind.
So I went to my Urologist appointment on the last Friday of January pretty relaxed knowing I had a minor condition which may or may not require a minor surgery to correct. That changed pretty quickly when he read my ultrasound report, underlined the term "malignancy", slid it across the table and asked me if I knew what that term meant? I did. It meant cancer. Then I read the whole line: The diagnosis of exclusion is malignancy. "So...does that mean malignancy is excluded then, as in, I do not have cancer"? "No, that means that by excluding everything else that it could be, that malignancy is the preliminary diagnosis". This can't be positively confirmed until the testicle is removed and the pathology is done though. I insist that my GP told me I did not have cancer. The urologist then decides the best way to proceed is to examine me. I'm happy to hear that I have a perfectly normal looking left testicle, perfectly normal looking penis but one huge right testicle which screams testicular cancer. He wants to remove it on Tuesday. I ask if we can wait until the following Friday because my in laws will be back from out of town and can watch my son. He said we can, but he doesn't think it's a good idea. I don't argue. He then sends me for more blood work, chest xray and an ECG and schedules surgery for Tuesday afternoon. This seems really fast but anyone who knows anything about testicular cancer knows that's how it works. Get the cancer out before it can spread.
Side note: The ultrasound report talked about cancer but the last line which is usually the diagnosis line described the varicocele. So I'm thinking my GP obviosly skimmed the report without reading the whole thing but it was also a confusing report apparently.
Adrienne and I met my urologist at his office late Tuesday morning to finish the paperwork and then headed staright over to the hospital for the surgery which would happen at the end of the day as long as they could fit me in.
I was admitted and was wheeled down for surgery a few hours later. When I got down to the surgery department my urologist was waiting in his scrubs. We chatted, he wrote something on my scrotum with a permanent marker, the anesthesiologist gave me the low down on what he would be doing and then it was into the operating room. I wasn't too nervous about the whole thing until I saw the operating room full of people, the stark walls and metal lights, etc. My urologist chatted with me, I'm pretty sure to distract me, until the anesthesia kicked in and I was out.
My memory of recovery is pretty vague. When I woke up, a nurse was at my side immediately and asked if I had any pain. I remember feeling the incision but the pain wasn't terrible. She gave me some morphine and I don't remember too much after that. I remember Adrienne stayed with me for a while and then had to go home because visiting hours were over and we did have a son at home.
A note of thanks to our friend Diana who took the day off work to watch Anthony in the afternoon and who came to the hospital afterward to stay with Adrienne while I was having surgery. Thanks also to Phil and Christina for taking care of Anthony that evening and all the other days and evenings since. To our friends who visited, brought food and/or helped out in any way. To Adrienne's Mom and Dad for anything and everything you do for us on any given day! And to Adrienne who has been great through all of this. Thank you in advance for looking after me during chemo. Back to the story...
I spent the rest of the evening trying to pee. If you don't pee within 6 hours of your surgery they start a catheter. I drank a ton of water but my brain is just not wired to pee lying down so finally I got the nurses to shoot me full of morphine and I stood up and finally peed with only a half an hour to spare.
I spent the rest of the night in the hopsital which isn't typical after an orchiectomy. Usually you spend about 6 hours and then you go home. My 6 hour mark would have been at 11PM so I just stayed over night. I was also having quite a bit of pain and the nurses figured it was better to stay at the hospital than rush home where Anthony would be jumping all over me. I think it was late afternoon the day after the surgery when I got home. The pain wasn't crazy but it was what you would expect from a 4 inch incision in the groin. That's right, if you thought they removed the testicle with a little cut in the scrotem you would be wrong. You see, the testicle empties into lymph nodes in the back but the scrotem empties into lymph nodes throughout the body so they don't want to disturb the cancer in there. Instead they make a big cut in your groin up to just under the waistline running parallel with the crease where your leg meets the groin. Then they push the testicle up and out through that and cut it off outside the body. When I read the detailed surgery report I almost passed out. Anyway, what was I talking about? Oh ya, recovery. I was in bed for 3 or 4 days and then slowly got back on my feet over the next week or so. I saw my urologist a week and a half after surgery and got my 18 staples removed. That wasn't fun but it was quick. I also healed better once the staples were out. My pathology report wasn't back yet but the Dr. actually called me later that day with the results. The cancer was confirmed as Pure Classic Invasive Seminoma that showed no signs of chord invasion. This basically meant that I had the better or more easily treatable type of testicular cancer which showed no sign of spread up the spermatic chord. This was good news.
My urologist said that Cancer Care would take it from here. He figured I would meet with my oncologist in about 3 weeks and if any treatment was required it would probably start about 3 weeks after that. He also said they would be in no hurry to see me because my tumour markers before the surgery were not elevated, the CT scan was normal and the type of cancer I had was slow growing and it looked like they got it all. This was a Friday. I was surprised when Cancer Care called me on Monday and wanted to see me on Tuesday. This worried me. It turns out that one of my tumour markers was slightly elevated and that the CT scan showed some lymph nodes that were on the high end of normal, 9mm where anything under 1cm is normal. So more bloodwork and another CT scan. I met with my oncologist a few weeks later and found out that my tumour marker was back to normal and my suspect lymph nodes had not grown. So my Dr. recommended surveillance, meaning more bloodwork in 2 months and another CT scan with more bloodwork in 4 months.
The 2 month bloodwork was fine. That brings us to my 4 month CT scan which I had done on July 6th. It showed that the suspect lymph nodes had grown to 1.3 cm. This pretty much confirms the presence of cancer in my Retroperiteneal Lymph nodes. This is typically where testicular cancer spreads after the testicle. If not treated it will spread most likely to the lungs and then to places like the brain, the liver, etc. And so my oncologist recommended treatment which could either be radiation or chemotherapy. The side effects of chemo aren't great but the long term effects of radiation are potentially other forms of cancer. They would have to radiate through my organs, bowls, etc to get to the affected lymph nodes. Also, there's a chance they could miss a lymph node and then I'm no better off. Chemotherapy would be a longer process but would kill the cancer anywhere in the body and the long term side effects seemed better.
And so I am set to begin 3 cylces of BEP on August 3rd. BEP means bleomycin, etoposide and cisplaten. The cycles are 21 days long. I will receive all three drugs on days 1-5 ( I believe) and just bleomycin on days 9 and 16. I've read about the drugs and lots of blogs by others that have gone through it. I am not looking forward to it but at least it's pretty short compared to most chemo's.
That's it for now. I plan to post short comments every few days as long as I'm feeling up to it. We'll see how it goes.
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