Hi guys,
Hope you are all doing well and that the dads and step-dads among you had a great Father's day. I was blessed myself because this was really the first day in the last 2 weeks I have not been feeling like I was hit by a truck. Feel really great actually. Week 5 is now behind me, so I am a little over half way done with my chemo, as I have 4 more weeks left.
What a difference a cycle can make though. This second one really did a number on me. I expected it to hit me harder then the first one but not like this.
It started out pretty good and the first three days in a row were fine. I even attended a birthday party of one the boys in my youngest one's class and had some good food and a great time chatting it up with some of the parents. I was told I pretty much looked like I was not on chemo at all. And I felt like it too. Not sick, not bloated, no headache, lots of energy and a very clear mind. I had more energy then most of the parents there (not like the kids though, sweet Lord, what we could accomplish if we still had 6 year old energy, eh?).
But, what a difference a short time can make. Fast forward 6 hours to 4:00 AM. I woke up with excruciating pain in the fingers of my right hand and could not move them (chemo attacks your nerve endings). I walked to the master bathroom and thought that maybe running some cold water over the hand would help and Advil, lots of Advil. Odd thing was that the more I woke up, the more I realized how every step was more difficult to make and it was real hard to simply walk. My whole body felt numb, especially my feet and the right side of my face. My right eye was almost shut closed and I had that terrible ringing in my ears again.
When I got to the bathroom and turned on the light I turned to the mirror to look at my eye and thought for a moment I was still asleep and having a nightmare. To my great shock I found I looked like Frankenstein. My skin was yellow/green with patches of grey, like a two week old corpse (sorry for that image :))
Not my best look, I tell you. My whole body and face were swollen from holding water (they pump about a gallon in you a day) and with my hand looking like a claw and my right eye shut well, let's just say I am glad I was alone in the bathroom and not around people. I might have been chased out of town!
It took two hours of me standing there leaning over the sink before things returned somewhat back to normal. Advil helped as well as turning on the heater to start sweating to get rid of some of that water. Two hours later I could straighten my body and hand and a shower later I felt, and more importantly, looked a bit more human.
I brought the kids to school and then had my 4th session for that week and boy did that one feel like fun. They had to pump a whole new array of drugs in me to get me through. My oncologist assured me though, that this was normal and had this to say:
"Marc, I am going for the cure with you, I am not trying to keep it at bay, so I am going to throw everything I have at you. Your pulmonary tests showed you are the strongest patient I ever had so though this sucks, I am not going to back down"
Great guy.
And so Thursday came and went, as did Friday. Saturday I felt pretty good till I had my Naulasta shot to get my white blood count up. The shot doesn't hurt but boy the effects are weird. Very disoriented the rest of the day, as well as the rest of the week actually.
The way my body deals with chemo is in waves. You feel good for 3 hours and then an equal time or longer you feel like utter crap. You feel like you need to violently throw up for three hours and then you feel like you are starving for an equal amount of time!
And the Heart burn! I mean, this is really heart burn. That beautiful organ God gave you to pump your blood now has to pump heavy metals like platinum through it and ever so often it gets too much and you feel like, well, a chemical burn is taking place in your chest. There is nothing you can do about it, you cannot pump your chest with your fist a la Chris Farley and anti acids don't address what is wrong. You just have to stick that out. It happens to your skin too. You can feel fine and all of a sudden your face or forearms feel like they are on fire. It is the weirdest thing. More then once I have had to suppress a bit of a panic attack because it comes on so fast you are simply not prepared for it.
Chemo brain is fun as well. Half the time you are simply staring and have utter lack of focus. You cannot read a book or watch a show because it's like vertigo and makes you feel ill. Cartoons kind of work though, and thus I have caught up on Tom and Jerry since oddly enough I can watch that without feeling like I just came out of the worst carnival ride ever :)
The bad thing about it is that you are never resting. Even though I lay down a lot, your mind is not resting and neither is your body. It doesn't help that for the last 5 weeks there has not been one night of sleep that lasted longer then 5 hours and even during these hours I wake up once or twice feeling like I am having an out of body experience.
And as bad as what I just described was, this past Monday's session hit me even harder resulting in me warming and hugging the porcelain god about 70 times (not joking) on Tue, Wed and Thu. Could not even hold water down. I ended up just camping out in the bathroom J
But you know, by Friday night I was pretty OK and I have had a great weekend actually. And I really dare not complain at all. I have the most curable form of cancer and my prognoses are over 90%. You'd bank your house if you had those odds in the lottery. I'll take this and more, since the last cycle will be even worse, because I know I will be cured 4 weeks from now.
I hope none of you think that any of the above is complaining. After two weeks like this it is kind of nice to write it down. I feel completely fine at the moment as if I have never had cancer or chemo. I feel like I could set a record at the gym :)
Isn't that something? What a mind trip this is!
Next is Bleomycin day. Bone fever and splitting headaches await. Piece of cake. Bring it on.
All the best,
Marc
Sunday, June 21, 2009
Tuesday, May 26, 2009
Well, 1st week of chemo over....
Sitting in the office right now for another 4 hours and figured I would update this a little in case some of you are wondering what it is like.
Chemo is an interesting way to cure you (and my oncologist is going for the cure by the way, hence the severe schedule I am on).
Chemo attacks fast growing cells in the body so they cannot replicate beyond a certain point where no matter what you do, they will take over your body. Now you have to realize your body is very strong and it might take a while before you feel the effects of this poison coursing through your veins. The first 4 days I actually felt that this was not going to be such a big deal beyond some general discomfort and nausea. And then of course Friday comes along and you realize why they do not do this for more then 5 days in a row.
I started the day with a huge drop in blood pressure making you feel like your heart's going to pop out of your chest and even though you are given 5lbs of fluid through an IV every day (yep, that much!) you still end up de-hydrated on the 5th day if you are not careful. And naturally, with my size and metabolism as well as the steroids they give me, I did not have enough fluids in my system to handle the anti-nausea medication very well. Stuff works great but the side effect is cramps in the muscles surrounding your lungs (they are targeting the lungs since, of course, that's where the cancer jumped to).
Now these are not your average cramps, you might want to picture the Hulk wrapping his arms around you and squeezing for a good 30 seconds :)
When the nurses saw me squirm they quickly took me off the meds, gave me more electrolytes and more fluids and about 45 minutes later I was back to normal, albeit sore as hell in my chest. No nausea though,... yippee..
After 5 hours of observation I was allowed to go home and rest. Thank God, now all I could do now was wait for any other side effects to take place.
On Saturday a nurse comes to your home and gives you a shot to bring up the white blood cell count (which chemo destroys) to prevent an infection from killing me before the chemo is done with the cancer (or me :)). This shot stimulates your bone marrow to produce more of these cells and you can experience "growth" pains while on it. Well duh. The rest of the day I felt like someone kicked me in the liver but by the evening I was fine and though exhausted, I was able to fall asleep.
Now, I was warned for the effects that take place two days after your chemo week but boy does it take you by surprise anyway. Remember I said it attacks the fast growing cells? Well, you have those in your eyes, ears, nose and mouth as well, not just your stomach (they are somewhere else as well but I do not want to make the guys cringe too much! ha-ha).
So you wake up with blurry vision, a terrible ringing in your ears (still not gone, and I now know what dogs feel like with those whistles), a constant need to clean my nose (which on the inside now feels as soft as a baby's bottom, you can trust me on that one :)) and perpetually dry mouth. Nothing tastes and smells the same, by the way. When I open the refrigerator I am immediately not hungry anymore since the cascade of smells coming at me is too much too bear. Even bread smells funny. No biggie, this will all be better at the end of the week and it will be back to normal at the end of next week and then, guess what? They are going to do it to me all over again :)
Well, I survived week 1, lost about 8 lbs but no hair :)
No sessions for the rest of the week. Just resting and a few tests maybe. With a bit of luck I get my taste buds back, 'cause I am starving at the moment.
All the best,
Marc
Chemo is an interesting way to cure you (and my oncologist is going for the cure by the way, hence the severe schedule I am on).
Chemo attacks fast growing cells in the body so they cannot replicate beyond a certain point where no matter what you do, they will take over your body. Now you have to realize your body is very strong and it might take a while before you feel the effects of this poison coursing through your veins. The first 4 days I actually felt that this was not going to be such a big deal beyond some general discomfort and nausea. And then of course Friday comes along and you realize why they do not do this for more then 5 days in a row.
I started the day with a huge drop in blood pressure making you feel like your heart's going to pop out of your chest and even though you are given 5lbs of fluid through an IV every day (yep, that much!) you still end up de-hydrated on the 5th day if you are not careful. And naturally, with my size and metabolism as well as the steroids they give me, I did not have enough fluids in my system to handle the anti-nausea medication very well. Stuff works great but the side effect is cramps in the muscles surrounding your lungs (they are targeting the lungs since, of course, that's where the cancer jumped to).
Now these are not your average cramps, you might want to picture the Hulk wrapping his arms around you and squeezing for a good 30 seconds :)
When the nurses saw me squirm they quickly took me off the meds, gave me more electrolytes and more fluids and about 45 minutes later I was back to normal, albeit sore as hell in my chest. No nausea though,... yippee..
After 5 hours of observation I was allowed to go home and rest. Thank God, now all I could do now was wait for any other side effects to take place.
On Saturday a nurse comes to your home and gives you a shot to bring up the white blood cell count (which chemo destroys) to prevent an infection from killing me before the chemo is done with the cancer (or me :)). This shot stimulates your bone marrow to produce more of these cells and you can experience "growth" pains while on it. Well duh. The rest of the day I felt like someone kicked me in the liver but by the evening I was fine and though exhausted, I was able to fall asleep.
Now, I was warned for the effects that take place two days after your chemo week but boy does it take you by surprise anyway. Remember I said it attacks the fast growing cells? Well, you have those in your eyes, ears, nose and mouth as well, not just your stomach (they are somewhere else as well but I do not want to make the guys cringe too much! ha-ha).
So you wake up with blurry vision, a terrible ringing in your ears (still not gone, and I now know what dogs feel like with those whistles), a constant need to clean my nose (which on the inside now feels as soft as a baby's bottom, you can trust me on that one :)) and perpetually dry mouth. Nothing tastes and smells the same, by the way. When I open the refrigerator I am immediately not hungry anymore since the cascade of smells coming at me is too much too bear. Even bread smells funny. No biggie, this will all be better at the end of the week and it will be back to normal at the end of next week and then, guess what? They are going to do it to me all over again :)
Well, I survived week 1, lost about 8 lbs but no hair :)
No sessions for the rest of the week. Just resting and a few tests maybe. With a bit of luck I get my taste buds back, 'cause I am starving at the moment.
All the best,
Marc
Monday, May 18, 2009
April 20th. 2nd PET scan results. Oncologist in shock.
Well,
I had high hopes that this blog would never need updating but alas it was not meant to be. The mind trip is going to continue. I am typing this from the oncologist's office and I am getting my first Chemo treatment (I have to be here for 4 hours so I might as well use the time wisely). The PET scan of mid-April showed that the 2 spots in my lungs had suddenly grown and that there were 4 additional spots. The radiologist and oncologist were quite shocked by this as two CAT scans and a PET scan had shown no growth whatsoever in the 2 original spots. The have the all of a sudden grow as well as see 4 additional spots all the while not having any spots in the places one would expect, left them quite taken with the situation.
I had started to feel increasingly bad though and the bloodwork revealed a test level of 180 (yeah, I know) so HRT was suggested but before we were going to do that we thought it best to do one more PET scan to make absolutely sure all was well. Good thing be did since out of nowhere the 2 spots had turned into 5. A lung biopsy was ordered immediately and after that fun procedure (the stick a 12 inch needle through your chest muscles into your lungs) the lab confirmed that the testicular cancer had jumped to the lungs. Crap.
Since the BEP chemo schedule can be detrimental to the lungs I had to do a Pulmanary Function Test. The results came back excellent ("strongest readings I have ever seen" according to the oncologist) and this going on the form of Chemo is not going to be much of a problem.
I will update this thread, this time mostly for myself, since I consider it therapeutic to write about the last months as well as the coming 9 weeks of Chemo. I have 5 days of 4 hour sessions this week and then next week and the following week is 1 day. This cycle of 5-1-1 will repeat twice so I will have 21 sessions in 9 weeks.
Keep your fingers crossed,
Marc
I had high hopes that this blog would never need updating but alas it was not meant to be. The mind trip is going to continue. I am typing this from the oncologist's office and I am getting my first Chemo treatment (I have to be here for 4 hours so I might as well use the time wisely). The PET scan of mid-April showed that the 2 spots in my lungs had suddenly grown and that there were 4 additional spots. The radiologist and oncologist were quite shocked by this as two CAT scans and a PET scan had shown no growth whatsoever in the 2 original spots. The have the all of a sudden grow as well as see 4 additional spots all the while not having any spots in the places one would expect, left them quite taken with the situation.
I had started to feel increasingly bad though and the bloodwork revealed a test level of 180 (yeah, I know) so HRT was suggested but before we were going to do that we thought it best to do one more PET scan to make absolutely sure all was well. Good thing be did since out of nowhere the 2 spots had turned into 5. A lung biopsy was ordered immediately and after that fun procedure (the stick a 12 inch needle through your chest muscles into your lungs) the lab confirmed that the testicular cancer had jumped to the lungs. Crap.
Since the BEP chemo schedule can be detrimental to the lungs I had to do a Pulmanary Function Test. The results came back excellent ("strongest readings I have ever seen" according to the oncologist) and this going on the form of Chemo is not going to be much of a problem.
I will update this thread, this time mostly for myself, since I consider it therapeutic to write about the last months as well as the coming 9 weeks of Chemo. I have 5 days of 4 hour sessions this week and then next week and the following week is 1 day. This cycle of 5-1-1 will repeat twice so I will have 21 sessions in 9 weeks.
Keep your fingers crossed,
Marc
Monday, March 23, 2009
Friday, February 20, 2009
Feb 18th: Results from PET scan:
The two lesions in my lungs have NOT grown in the last 6 weeks and there were no active lesions found in the abdomen, pelvis, neck, bones etc. Blood work was fine too and no tumor markers were found.
They offered me the option of doing a biopsy to be a 100% sure about the tissue, but between the radiologist being pretty sure it was not cancer and the oncologist preferring not to do a biopsy because of possible lung collapse, we have opted for another PET scan in 8 weeks (mid April).
I know I have to be monitored for several years to come since there is always the chance it comes back in the affected area (5%) in the right testicle (15%) or somewhere else (10-15%) but I would say for now I have gotten the best news I could possibly get.
I am kind of emotionally messed up right now though. I was mentally preparing for a fight equal to 12 rounds with a Mike Tyson on crack and now I have a hard time relaxing and feeling good. One of the reasons for my worry was that the urologist had never removed a tumor my size (2 1/2 inches diameter) and not see it spread anywhere else. The oncologist confirmed this. So I was expecting chemo and everything.
Peace will come as it sinks in completely, I guess. I have lost family members and a very, very dear friend to cancer (God, she fought like hell. 22 years later it still brings tears to my eyes to have seen someone so utterly beautiful waste away, appear to be winning, and then waste away again to eventually lose that fight) and those are hard thoughts to let go.
Man this is a mind trip. They think it isn't cancer but they are not sure. For now I am going to see this as good news. If it does come back, I am prepared for it mentally and emotionally.
They offered me the option of doing a biopsy to be a 100% sure about the tissue, but between the radiologist being pretty sure it was not cancer and the oncologist preferring not to do a biopsy because of possible lung collapse, we have opted for another PET scan in 8 weeks (mid April).
I know I have to be monitored for several years to come since there is always the chance it comes back in the affected area (5%) in the right testicle (15%) or somewhere else (10-15%) but I would say for now I have gotten the best news I could possibly get.
I am kind of emotionally messed up right now though. I was mentally preparing for a fight equal to 12 rounds with a Mike Tyson on crack and now I have a hard time relaxing and feeling good. One of the reasons for my worry was that the urologist had never removed a tumor my size (2 1/2 inches diameter) and not see it spread anywhere else. The oncologist confirmed this. So I was expecting chemo and everything.
Peace will come as it sinks in completely, I guess. I have lost family members and a very, very dear friend to cancer (God, she fought like hell. 22 years later it still brings tears to my eyes to have seen someone so utterly beautiful waste away, appear to be winning, and then waste away again to eventually lose that fight) and those are hard thoughts to let go.
Man this is a mind trip. They think it isn't cancer but they are not sure. For now I am going to see this as good news. If it does come back, I am prepared for it mentally and emotionally.
I have told my kids that so far so good but we will not know for sure if Dad is not still sick for at least 6 months.
That's OK they say, they take what they can get :)
I am Blessed with my sons, did I tell you guys that already?
Thursday, February 19, 2009
February 6th. PET Scan.
I was instructed not to eat for 6 hours preceding. Should have done this in the a.m. but it is a 2 ½ hour process and I needed to go to work so the appointment was set at 4 p.m.
Interesting procedure. After they take a bit of my blood and find my blood sugar is low enough (I am frakking starving by now of course) the technician comes in with a lead encapsulated box which holds a lead encapsulated syringe.
This syringe holds radioactive sugar and as he injects me with the sugar he explains that cancer likes sugar en that the sugar will attach itself to cancerous cells and since it is radioactive it will show up nicely in the screen.
I have to sit perfectly still for another 45 minutes though because movement will improve the uptake of the sugar in the muscles and he does not want that. No TV, no book. Nap time I guess. Too hungry though. Next time I go in the morning!
After 45 minutes I get wheeled into the room and get to lie on a thin bed. Since I am a rather large fellow I need to keep my arms stretched out overhead. The CAT scan was done fast but this is a very slow process.
The machine starts to scan you from the base of the skull and will go down to the legs. I ever so slowly slide out of the machine and 30 minutes later I can move my arms to my chest. Wonderful. How many times a year do I have to do this?
The results will be made available after 48 hours he says. He looks tired. At least that's what I tell myself. I hope it is not worry I am seeing.
I am still waiting to hear back.
Interesting procedure. After they take a bit of my blood and find my blood sugar is low enough (I am frakking starving by now of course) the technician comes in with a lead encapsulated box which holds a lead encapsulated syringe.
This syringe holds radioactive sugar and as he injects me with the sugar he explains that cancer likes sugar en that the sugar will attach itself to cancerous cells and since it is radioactive it will show up nicely in the screen.
I have to sit perfectly still for another 45 minutes though because movement will improve the uptake of the sugar in the muscles and he does not want that. No TV, no book. Nap time I guess. Too hungry though. Next time I go in the morning!
After 45 minutes I get wheeled into the room and get to lie on a thin bed. Since I am a rather large fellow I need to keep my arms stretched out overhead. The CAT scan was done fast but this is a very slow process.
The machine starts to scan you from the base of the skull and will go down to the legs. I ever so slowly slide out of the machine and 30 minutes later I can move my arms to my chest. Wonderful. How many times a year do I have to do this?
The results will be made available after 48 hours he says. He looks tired. At least that's what I tell myself. I hope it is not worry I am seeing.
I am still waiting to hear back.
January 28th. Oncologist visit. Bit of a shock is coming.
Oncologist is a great guy, young, my age I think. He took time to explain that I actually had/have two forms of cancer, the common one and a rare one and that the two lesions in my lungs need to be monitored. For the next 6 years I need to come back every two months and give blood and do either a CAT scan or a PET scan.
The shocked look on my face made him get up and close the door. He gave me some time to collect my thoughts. Shit, I feel fine. I even went back to work. I need to come here every two months? And what the hell is a PET scan?
We talk a bit more and he asks me if I did steroids. I thank him for the compliment but said no. I did tell him I had used pro-hormones in the past and asked him if that could have caused this? He said it was unlikely but that now my sex hormonal system has been affected; I cannot use anything for at least the 6 years he is going to treat me.
It could cause it to come back in the other testicles. There is a 5% change the area they took the testicle out of will have cancer again and a 15% chance it might come back in the other one. Steroids or not.
I had thought about it because I had lost 22lbs already since the operation and I thought it might help when going on chemo.
BUT: No chemo yet, he said. The lesions in my lungs are not large enough to do that yet. Let's check what the PET scan offers.
Heck, this tissue might not grow, ever. We do not know, we need to monitor you. We talk a bit, I give 10 more vials of blood and off I go.
Sweet mother of pearl, 6 times a year. I am not sure what I was thinking though.
I have cancer. They took an enormous tumor out of my body. I lost my testicle. What, I was going to take some whey protein and be fine? Wait till I am in excruciating pain somewhere else? Damn. Now I am going to be reminded of this crap every two months. And what the hell is a PET scan? I forgot to ask. Moron is right.
The shocked look on my face made him get up and close the door. He gave me some time to collect my thoughts. Shit, I feel fine. I even went back to work. I need to come here every two months? And what the hell is a PET scan?
We talk a bit more and he asks me if I did steroids. I thank him for the compliment but said no. I did tell him I had used pro-hormones in the past and asked him if that could have caused this? He said it was unlikely but that now my sex hormonal system has been affected; I cannot use anything for at least the 6 years he is going to treat me.
It could cause it to come back in the other testicles. There is a 5% change the area they took the testicle out of will have cancer again and a 15% chance it might come back in the other one. Steroids or not.
I had thought about it because I had lost 22lbs already since the operation and I thought it might help when going on chemo.
BUT: No chemo yet, he said. The lesions in my lungs are not large enough to do that yet. Let's check what the PET scan offers.
Heck, this tissue might not grow, ever. We do not know, we need to monitor you. We talk a bit, I give 10 more vials of blood and off I go.
Sweet mother of pearl, 6 times a year. I am not sure what I was thinking though.
I have cancer. They took an enormous tumor out of my body. I lost my testicle. What, I was going to take some whey protein and be fine? Wait till I am in excruciating pain somewhere else? Damn. Now I am going to be reminded of this crap every two months. And what the hell is a PET scan? I forgot to ask. Moron is right.
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