I haven't posted in a very long time as I was going into surveillance mode. Life started to return back to normal. Hair started coming back and energy was back. Time to conquer the world again.
Becky and I went to Key West to celebrate my clear scan in August.
Tyler and I were getting ready for our trip to Cozumel Mexico at the end of October. Work was starting to go well.
I had a chest scan and blood work and things were still looking good.
Then we went on vacation to Cozumel. This vacation was primarily for Tyler and my 6 year anniversary and to celebrate being clear of cancer. We arrived at the resort on Saturday evening, with our friends Bill and Heidi, and thought it was beautiful. We had a nice day on Sunday hanging out by the pool and ocean, playing cards, snorkeling, etc. Then Tyler suffered a massive heart attack. 2009 would continue to challenge us.
So of course, I started a different blog to keep people updated about the latest 2009 crisis. It is at http://tylerheart.blogspot.com.
Robert
Euphoria - 8/21/2009
"I'm sorry, could you say that one more time?"
I had my PET Scan on Thursday and it seemed to go well. Forty minutes of sitting in a chair trying to relax completely followed by 20 minutes in the PET Scan. I left without feeling much emotion and went on with things.
Friday afternoon I received a call from the doctor's office. I figured they were just confirming my Monday appointment. The nurse said she thought I should have good news for the weekend. Still not comprehending what she was going to say, I replied , "..oh, what would that be?". She then told me my scan looked good.
At this point in this "life event", I don't get to excited and believe things right away. I was told by the surgeon at one point that it looked like they had taken care of things by doing the surgery. Oh, umm, no that wasn't quite correct.
So I asked the nurse what did "look good" really mean? Was it that it looked pretty, yet the doctor would need to confirm things Monday? It looked good, but there was still something going on? When you say "celebrate".... celebrate what exactly?
By this point the nurse was getting playfully annoyed with me. She then said, "ROBERT, your scan is as clear as a scan can be". "Go and celebrate". Of course I then responded with ".. so this means after Monday's appointment I would come in for a checkup in 3 months, then six months, then yearly for a couple of years? Is that what is next?". At this point if she had hung up I wouldn't have blamed her. But I'm sure she has been through this before and has gotten my reaction before.
After hanging up, the totality of what she had just told me hit. It hit hard. Harder than I imagined it would hit and harder than anything has ever hit me before. Even the initial diagnosis didn't hit me this hard. I starting crying pretty uncontrollably. It was hard at first to tell people because they couldn't hear me from all the crying.
To have this anxiety lifted unexpectedly (since I wasn't expecting a call either way) was amazing. All the stress of the past four months to be suddenly swept away almost made me collapse.
The past week was a tough week work wise. But I noticed by the end of the week that I felt better and had more energy than I've had in about 2 years. It was the first indication that things might be good inside.
Now my task will be getting back to a new normal. I don't want to go back to just normal as I want to remember what this felt like so I do things differently. Not radically different, just remembering what I'm capable of getting through and applying that to the new challenges that will come along. But I'll probably also get back to normal in that I will quit pontificating about life's challenges and just move on!
I had my PET Scan on Thursday and it seemed to go well. Forty minutes of sitting in a chair trying to relax completely followed by 20 minutes in the PET Scan. I left without feeling much emotion and went on with things.
Friday afternoon I received a call from the doctor's office. I figured they were just confirming my Monday appointment. The nurse said she thought I should have good news for the weekend. Still not comprehending what she was going to say, I replied , "..oh, what would that be?". She then told me my scan looked good.
At this point in this "life event", I don't get to excited and believe things right away. I was told by the surgeon at one point that it looked like they had taken care of things by doing the surgery. Oh, umm, no that wasn't quite correct.
So I asked the nurse what did "look good" really mean? Was it that it looked pretty, yet the doctor would need to confirm things Monday? It looked good, but there was still something going on? When you say "celebrate".... celebrate what exactly?
By this point the nurse was getting playfully annoyed with me. She then said, "ROBERT, your scan is as clear as a scan can be". "Go and celebrate". Of course I then responded with ".. so this means after Monday's appointment I would come in for a checkup in 3 months, then six months, then yearly for a couple of years? Is that what is next?". At this point if she had hung up I wouldn't have blamed her. But I'm sure she has been through this before and has gotten my reaction before.
After hanging up, the totality of what she had just told me hit. It hit hard. Harder than I imagined it would hit and harder than anything has ever hit me before. Even the initial diagnosis didn't hit me this hard. I starting crying pretty uncontrollably. It was hard at first to tell people because they couldn't hear me from all the crying.
To have this anxiety lifted unexpectedly (since I wasn't expecting a call either way) was amazing. All the stress of the past four months to be suddenly swept away almost made me collapse.
The past week was a tough week work wise. But I noticed by the end of the week that I felt better and had more energy than I've had in about 2 years. It was the first indication that things might be good inside.
Now my task will be getting back to a new normal. I don't want to go back to just normal as I want to remember what this felt like so I do things differently. Not radically different, just remembering what I'm capable of getting through and applying that to the new challenges that will come along. But I'll probably also get back to normal in that I will quit pontificating about life's challenges and just move on!
Waiting - 8/20/2009
It is 7:40am, waiting to leave for my PET Scan at 9:00am and I don't want to go. I'm not scared of the PET Scan itself, I just want this to be over. Each day closer to the scan I've become more anxious. Part of this is that I want to make sure I do everything possible to have a good scan. There isn't really a whole lot I can do. No food 6 hours before and no strenuous exercise 24 hours before.
During this week I've also had a positive. My hair is starting to grow back. Each morning I look and more hair is on my head. Yeah, this can be considered vanity. Too bad. As I've been pretty consistent so far with my mantra... "I want my hair back"!
Also, I've been drinking Kefir, which is a yogurt type smoothie. It helped get my digestive tract back in line. I was still having heartburn and indigestion 3 weeks after the last treatment. Drinking coffee and fruit juices tend to mess with my digestion, so I've also held back on those.
After my last treatment I had a lot of positive comments from people about being done with cancer. While the sentiments were good, I still had/have the feeling of "...yeah, but it isn't quite over". Do I think the results will be good on Monday? Yes. But I still won't know until then.
What I figured out though is the following:
When you have it, you have it. When you've had it, you never want to have it again.
Basically, once the diagnosis is made, you have it. You go into fight mode and just charge ahead with treatment. But once treatment is over, a realization feeling kicks in, and you never want to go through this again. So my anxiousness is praying/hoping/wishing that the scan results are good. That the doctor Monday says we are going into surveillance mode. Even though surveillance mode still means they are watching to see if the cancer re-surfaces, at least it won't be, "....oh we need to do more surgery or treatment".
My fingers (and arms, and legs, and whatever hair I have) are crossed!
During this week I've also had a positive. My hair is starting to grow back. Each morning I look and more hair is on my head. Yeah, this can be considered vanity. Too bad. As I've been pretty consistent so far with my mantra... "I want my hair back"!
Also, I've been drinking Kefir, which is a yogurt type smoothie. It helped get my digestive tract back in line. I was still having heartburn and indigestion 3 weeks after the last treatment. Drinking coffee and fruit juices tend to mess with my digestion, so I've also held back on those.
After my last treatment I had a lot of positive comments from people about being done with cancer. While the sentiments were good, I still had/have the feeling of "...yeah, but it isn't quite over". Do I think the results will be good on Monday? Yes. But I still won't know until then.
What I figured out though is the following:
When you have it, you have it. When you've had it, you never want to have it again.
Basically, once the diagnosis is made, you have it. You go into fight mode and just charge ahead with treatment. But once treatment is over, a realization feeling kicks in, and you never want to go through this again. So my anxiousness is praying/hoping/wishing that the scan results are good. That the doctor Monday says we are going into surveillance mode. Even though surveillance mode still means they are watching to see if the cancer re-surfaces, at least it won't be, "....oh we need to do more surgery or treatment".
My fingers (and arms, and legs, and whatever hair I have) are crossed!
The End of Chemo
7/22/2009
Last Friday was my last chemo day. What a psychological boost to know it would be the last infusion. The 4th cycle didn't seem to be as hard as the 3rd cycle, but I'm wondering how much knowing it was the last one helped. I also finally got into a routine of taking the Prilosec and Compazine pills right away even before feeling any indigestion/nausea. On the last day Melissa brought cupcakes to the treatment center, a family whose father is going through treatments brought tote bags with goodies, and when I was done the nurses gave me a coffee cup with "yippee!" on it. Nice little festive atmosphere. The nurses wanted to "celebrate", but I was ready to go. I stood up and said thank you to the nurses, wished my fellow patients good luck, and left as quickly as possible.
Friday night I had a moment when thinking about the treatments that was surreal. It was a moment where I realized I had just gone through 4 cycles of chemo. It didn't seem like it actually happened, although I definitely know it did. I think I just approached the chemo in a "task" way, that it wasn't until the end that I saw the totality of the treatment.
So I was asked what I learned from the experience.
First, chemo sucks.
The treatment for testicular cancer takes up about 1 1/2 weeks each time. One week for the actual infusion, and about 4 more days of exhaustion and indigestion/nausea. The first couple of days of infusions you can still do some work, but by the end of the week concentration is hard and you are worn out. It is good to be in tune with your body and vigilant in taking pills when you need them.
Having a catheter stuck in your arm for days isn't painful, just a constant reminder. You also are sensitive to anything getting near the catheter and taking a shower becomes problematic.
Bone/Skull pain (a reaction to the Nuelasta shot) has to be watched for even 12 to 14 days after the shot. It is important to catch this pain at the very beginning and remedy it before it takes over (one Aleve and one Vicodin). This is the absolute worst pain I've ever felt. But it only lasted about an hour.
The nausea can be kept at bay with the Compazine. It is the indigestion and lack of appetite that is a constant companion and for me the worst part of chemo.
Being exhausted isn't great, but sleep is nice, so for me this was the smallest issue of chemo. I just had to allow myself to take naps.
Staying hydrated helps, but is a little difficult. By the end of the treatment week, there is a semi-metallic taste, so liquids start to taste different. Also, constantly going to the bathroom gets boring. This also contributes to the bloated feeling.
Sensitivity to smell, depending on your level of OCD, can be irritating. At first you search for the offending smell only to find out you are the only one smelling it. At some point you just have to accept that the smell is not really there.
Appreciation for woman-kind. Chemo for a quy gives a little clue of what women must go through month after month. The bloating and cramping and smell sensitivity. How in the world could someone do this month after month after month?
Beyond the "technical" what did I learn?
In an odd way I learned that there is plenty of time for everything. Right before this started I was worried about how I was going to get all the work I needed to do done before the end of the summer. Not only did I finish most of the work but also went to a lake for a week and did chemo treatments.
I also learned to receive gifts (well-wishes, support, baklava, trips, rocks, dirt, cookies, bath supplies...) without the need to reciprocate. To accept the genuine outpouring of help and love without trying to keep some sort of balance or tote board. This is a time when people desperately want to help and it is important to let them.
The support group goes through mental stress while the patient goes through physical and mental stress. But I think it is worse for the support people. The patient knows minute by minute what is going on and is dealing with all that is happening. For loved ones, they get to watch and worry. And unless they have gone through something similar, cancer is such a big word that the worry level matches. Putting up a good front ("I'm fine", "I'll be okay", "It's not a big deal") probably really doesn't help the people who are watching this happen. Trying to describe what is happening can be hard sometimes but I think it helps those watching that while unpleasant, this can be dealt with.
Your closest support person is going to go through hell with you. Tyler has had to witness the lowest lows and in excruciating detail. The moodiness, the skull pain (screaming), the lack of appetite, the exhaustion, vomiting. So a lot of times it is the closest person to the patient that actually needs more support from the group. The patient has nurses and doctors in addition to friends and family. The support person has to pick up extra mundane duties (walking the dog more, chores around the house, etc.) while being worried and concerned.
Your 5 year plan never tends to work out exactly how you planned. I had forgotten to plan cancer in my life plan (silly me). But you either deal with the bumps or you mope around. Your choice.
Own your pain. I was told this in the beginning, even before surgery. Trying to put up a good front constantly is counter-productive. In a short time you will have had surgery and chemo. This isn't a cake walk and it is okay to sleep and feel miserable. Many times I would get to the point of wanting to whine and then of course I would meet the guy without a bladder or lung, the person going through chemo and radiation, the person that has been dealing with cancer for years. But it is okay to have those moments of "this sucks". Because while there may be other people dealing with even bigger issues, there are others that aren't. I think comparing myself to those dealing with the bigger issues was a way of keeping my resolve to keep pushing through.
Going forward:
I have a PET scan scheduled in about 5 weeks (August 20th). Ahhh! To just know that I don't have to do chemo again in a another week gives me great joy. I'll start to feel normal again and can sustain that normal feeling. The PET scan will show how well the chemo worked and from there I'll go into a surveillance mode. My challenge now is to not really go back to "normal". What is the point of going through this if there is no positive upside. The challenge is to remember all the good things that have been shown to me. So, keep the gifts coming! ;-). And by the way, the "cancer card" is a punch system, not a time based system. You get to use it a certain number of times over your life. Just because chemo is done doesn't mean I can't still say ... "well, I have/had cancer". Okay, maybe this isn't true!
So my next post won't be until the PET scan results come back. I could post it now because it is going to show everything is fine!
Last Friday was my last chemo day. What a psychological boost to know it would be the last infusion. The 4th cycle didn't seem to be as hard as the 3rd cycle, but I'm wondering how much knowing it was the last one helped. I also finally got into a routine of taking the Prilosec and Compazine pills right away even before feeling any indigestion/nausea. On the last day Melissa brought cupcakes to the treatment center, a family whose father is going through treatments brought tote bags with goodies, and when I was done the nurses gave me a coffee cup with "yippee!" on it. Nice little festive atmosphere. The nurses wanted to "celebrate", but I was ready to go. I stood up and said thank you to the nurses, wished my fellow patients good luck, and left as quickly as possible.
Friday night I had a moment when thinking about the treatments that was surreal. It was a moment where I realized I had just gone through 4 cycles of chemo. It didn't seem like it actually happened, although I definitely know it did. I think I just approached the chemo in a "task" way, that it wasn't until the end that I saw the totality of the treatment.
So I was asked what I learned from the experience.
First, chemo sucks.
The treatment for testicular cancer takes up about 1 1/2 weeks each time. One week for the actual infusion, and about 4 more days of exhaustion and indigestion/nausea. The first couple of days of infusions you can still do some work, but by the end of the week concentration is hard and you are worn out. It is good to be in tune with your body and vigilant in taking pills when you need them.
Having a catheter stuck in your arm for days isn't painful, just a constant reminder. You also are sensitive to anything getting near the catheter and taking a shower becomes problematic.
Bone/Skull pain (a reaction to the Nuelasta shot) has to be watched for even 12 to 14 days after the shot. It is important to catch this pain at the very beginning and remedy it before it takes over (one Aleve and one Vicodin). This is the absolute worst pain I've ever felt. But it only lasted about an hour.
The nausea can be kept at bay with the Compazine. It is the indigestion and lack of appetite that is a constant companion and for me the worst part of chemo.
Being exhausted isn't great, but sleep is nice, so for me this was the smallest issue of chemo. I just had to allow myself to take naps.
Staying hydrated helps, but is a little difficult. By the end of the treatment week, there is a semi-metallic taste, so liquids start to taste different. Also, constantly going to the bathroom gets boring. This also contributes to the bloated feeling.
Sensitivity to smell, depending on your level of OCD, can be irritating. At first you search for the offending smell only to find out you are the only one smelling it. At some point you just have to accept that the smell is not really there.
Appreciation for woman-kind. Chemo for a quy gives a little clue of what women must go through month after month. The bloating and cramping and smell sensitivity. How in the world could someone do this month after month after month?
Beyond the "technical" what did I learn?
In an odd way I learned that there is plenty of time for everything. Right before this started I was worried about how I was going to get all the work I needed to do done before the end of the summer. Not only did I finish most of the work but also went to a lake for a week and did chemo treatments.
I also learned to receive gifts (well-wishes, support, baklava, trips, rocks, dirt, cookies, bath supplies...) without the need to reciprocate. To accept the genuine outpouring of help and love without trying to keep some sort of balance or tote board. This is a time when people desperately want to help and it is important to let them.
The support group goes through mental stress while the patient goes through physical and mental stress. But I think it is worse for the support people. The patient knows minute by minute what is going on and is dealing with all that is happening. For loved ones, they get to watch and worry. And unless they have gone through something similar, cancer is such a big word that the worry level matches. Putting up a good front ("I'm fine", "I'll be okay", "It's not a big deal") probably really doesn't help the people who are watching this happen. Trying to describe what is happening can be hard sometimes but I think it helps those watching that while unpleasant, this can be dealt with.
Your closest support person is going to go through hell with you. Tyler has had to witness the lowest lows and in excruciating detail. The moodiness, the skull pain (screaming), the lack of appetite, the exhaustion, vomiting. So a lot of times it is the closest person to the patient that actually needs more support from the group. The patient has nurses and doctors in addition to friends and family. The support person has to pick up extra mundane duties (walking the dog more, chores around the house, etc.) while being worried and concerned.
Your 5 year plan never tends to work out exactly how you planned. I had forgotten to plan cancer in my life plan (silly me). But you either deal with the bumps or you mope around. Your choice.
Own your pain. I was told this in the beginning, even before surgery. Trying to put up a good front constantly is counter-productive. In a short time you will have had surgery and chemo. This isn't a cake walk and it is okay to sleep and feel miserable. Many times I would get to the point of wanting to whine and then of course I would meet the guy without a bladder or lung, the person going through chemo and radiation, the person that has been dealing with cancer for years. But it is okay to have those moments of "this sucks". Because while there may be other people dealing with even bigger issues, there are others that aren't. I think comparing myself to those dealing with the bigger issues was a way of keeping my resolve to keep pushing through.
Going forward:
I have a PET scan scheduled in about 5 weeks (August 20th). Ahhh! To just know that I don't have to do chemo again in a another week gives me great joy. I'll start to feel normal again and can sustain that normal feeling. The PET scan will show how well the chemo worked and from there I'll go into a surveillance mode. My challenge now is to not really go back to "normal". What is the point of going through this if there is no positive upside. The challenge is to remember all the good things that have been shown to me. So, keep the gifts coming! ;-). And by the way, the "cancer card" is a punch system, not a time based system. You get to use it a certain number of times over your life. Just because chemo is done doesn't mean I can't still say ... "well, I have/had cancer". Okay, maybe this isn't true!
So my next post won't be until the PET scan results come back. I could post it now because it is going to show everything is fine!
Idaho
7/6/2009
I'm now at Priest Lake in Northern Idaho. So I guess I got through my 3rd cycle. The weekend was tough, but again, by Wednesday I was feeling better. My appetite was still slow to return, but is back again.
The lake is beautiful and we have been out on the water a lot. Trying to learn how to water ski again. I had one night where fatigue set in and slept for a couple of hours. Other than that, getting work done and enjoying the lake.
The MRI came back negative. They did find a tiny foci that may explain some of the migraines. But I'm still trying to prepare myself for the skull pain from the Nuelasta shot (if it happens again). The doctor said that 12 - 14 days is not uncommon for the skull pain. Also said to take an Alleve and Vicodin the second I start to fell pain.
There is still some numbness around the incision from the surgery and the scar is still healing. This is two months after the surgery.
The most important thing I'm doing is remembering to drink plenty of fluids.
Next Monday starts the fourth cycle. Deep breaths. I'm just preparing myself to feel bad but will also be counting down the days to my last treatment. Almost there!!
I'm now at Priest Lake in Northern Idaho. So I guess I got through my 3rd cycle. The weekend was tough, but again, by Wednesday I was feeling better. My appetite was still slow to return, but is back again.
The lake is beautiful and we have been out on the water a lot. Trying to learn how to water ski again. I had one night where fatigue set in and slept for a couple of hours. Other than that, getting work done and enjoying the lake.
The MRI came back negative. They did find a tiny foci that may explain some of the migraines. But I'm still trying to prepare myself for the skull pain from the Nuelasta shot (if it happens again). The doctor said that 12 - 14 days is not uncommon for the skull pain. Also said to take an Alleve and Vicodin the second I start to fell pain.
There is still some numbness around the incision from the surgery and the scar is still healing. This is two months after the surgery.
The most important thing I'm doing is remembering to drink plenty of fluids.
Next Monday starts the fourth cycle. Deep breaths. I'm just preparing myself to feel bad but will also be counting down the days to my last treatment. Almost there!!
3rd Cycle - What is that smell?
6/29/2009
I completed my 3rd cycle last week and it looks like there is a cumulative effect. I lost my appetite for food though tried to drink fluids and eat. Not really interested in dinner. Friday, Saturday, and Sunday was nothing more than exhaustion and digestive issues. I slept a lot and pretty much felt miserable during the weekend. I popped a lot of anti-nausea pills. Mainly it felt like whatever I ate and drank just sat on my stomach. Monday morning I'm feeling a lot better and was probably due to eating dinner Sunday night.
I also have a heightened sense of smell. I smell dirt that Tyler doesn't notice. Coffee smells bad. I feel like I want a shower constantly. Just the drugs messing with me. I'm hoping this sensitivity goes away in the next couple of days.
Today is my Nuelasta shot (3/4 strength) and my head MRI. The MRI is to satisfy the outstanding question of "why scan my mid-section and upper body, but not my head". I honestly don't want to know the results but I'm sure they will be fine. Tomorrow is my doctor's appointment and then off to Idaho on Thursday.
Last week was also a fairly busy business week which may have sapped my energy also. For the Idaho trip, I made sure I had the location/directions to the local hospital and checked up on what I need to take my prescriptions on the flight. Hopefully everything will be fine and will get some rest. Of course it looks like I will have internet access at the lake so of course I will do some work.
Basically, for me, the 3rd cycle was the one that showed me that I really wasn't going to do this like a cake walk. I'm trying to summon up the courage for cycle 4 and will be overjoyed when that is done. I guess this is the "fight" portion of treatment.
I completed my 3rd cycle last week and it looks like there is a cumulative effect. I lost my appetite for food though tried to drink fluids and eat. Not really interested in dinner. Friday, Saturday, and Sunday was nothing more than exhaustion and digestive issues. I slept a lot and pretty much felt miserable during the weekend. I popped a lot of anti-nausea pills. Mainly it felt like whatever I ate and drank just sat on my stomach. Monday morning I'm feeling a lot better and was probably due to eating dinner Sunday night.
I also have a heightened sense of smell. I smell dirt that Tyler doesn't notice. Coffee smells bad. I feel like I want a shower constantly. Just the drugs messing with me. I'm hoping this sensitivity goes away in the next couple of days.
Today is my Nuelasta shot (3/4 strength) and my head MRI. The MRI is to satisfy the outstanding question of "why scan my mid-section and upper body, but not my head". I honestly don't want to know the results but I'm sure they will be fine. Tomorrow is my doctor's appointment and then off to Idaho on Thursday.
Last week was also a fairly busy business week which may have sapped my energy also. For the Idaho trip, I made sure I had the location/directions to the local hospital and checked up on what I need to take my prescriptions on the flight. Hopefully everything will be fine and will get some rest. Of course it looks like I will have internet access at the lake so of course I will do some work.
Basically, for me, the 3rd cycle was the one that showed me that I really wasn't going to do this like a cake walk. I'm trying to summon up the courage for cycle 4 and will be overjoyed when that is done. I guess this is the "fight" portion of treatment.
Migraines and more
6/19/2009
Started to get a headache in the afternoon that turned into a full migraine by 7pm. Tried taking a Vicadin and aspirin. Neither made any difference because within 15 minutes I was throwing up. This is 14 days after my last chemo. I had the same thing happen about 12 days after the first cycle of chemo. So I don't know if this is really related to chemo or just a lucky coincidence that I get food poisoning between chemo treatments.
Of course I'm dreading next week (3rd cycle). I just need to put myself in a better mindset. Last night didn't help, but at least by the end of next week I'll only have one more cycle to go.
At this point, the only thing really bothering me about the surgery is the scar. It is almost fully healed and I've now been to the gym twice. After the gym the surgery area (scar and upper left leg) begin to feel sore but not to bad.
Still amazing that all of this (surgery and chemo) has happened in 2 months, since the surgery was April 20th.
Started to get a headache in the afternoon that turned into a full migraine by 7pm. Tried taking a Vicadin and aspirin. Neither made any difference because within 15 minutes I was throwing up. This is 14 days after my last chemo. I had the same thing happen about 12 days after the first cycle of chemo. So I don't know if this is really related to chemo or just a lucky coincidence that I get food poisoning between chemo treatments.
Of course I'm dreading next week (3rd cycle). I just need to put myself in a better mindset. Last night didn't help, but at least by the end of next week I'll only have one more cycle to go.
At this point, the only thing really bothering me about the surgery is the scar. It is almost fully healed and I've now been to the gym twice. After the gym the surgery area (scar and upper left leg) begin to feel sore but not to bad.
Still amazing that all of this (surgery and chemo) has happened in 2 months, since the surgery was April 20th.
Eating Dirt
6/12/2009
Had a doctor's appointment yesterday. Blood work looks very good. The doctor said I was handling the treatments very well. He looked surprised as he said this. May have been because I was in "logic" mode and was pushing to schedule the next round of treatment, the Nuelasta shot, and next doctor's appointment. I'm going to Idaho on July 2nd and was pushing the doctor to schedule his appointment around that. Basically if I'm doing well with this, I get to have a life also.
Monday was my hard day again. This time getting dizzy and head rushes. Just a few moments but enough to make me lay down. My energy level came back around Tuesday evening and gets better everyday.
Now to "Eating Dirt".
A good friend stopped by last night and brought me dirt from a church in Mexico. It is I guess "holy" dirt and cures anything. So, I have a dirt remedy, some kind of tea remedy, ginger, garlic, a Mexican cream, and some kind of supplement that I'm supposed to take.
Hmmm. I'm still letting western medicine take its course. But all these alternative therapies that have been suggested or given to me have a place also. By that I mean they are given/suggested out of love. Everyone wants to cure the cancer and are jumping into help. The problem with comparing western therapies to alternative therapies is proof. There are studies to back up western medicine and only anecdotal evidence for alternative therapies. But I believe that alternative/natural remedies have to have the belief quotient in order to work. This can't be tested in a lab. So if you believe eating dirt or massive amounts of garlic will cure the cancer, then it just might.
Consider the choice between taking natural supplements versus getting pump full of toxins. All things being equal, give me the garlic. But I've eaten garlic all my life and I still got cancer. Maybe I didn't eat enough.
Okay, get ready, a hippie moment:
What is the harm of sprinkling a few grains of holy dirt on some food? Ugh gross, right? What about injecting yourself with basically platinum, a poisonous metal? Someone gave me dirt that they believe in and have prayed over and it is "infused" with their love for me. Why reject the power of prayer? Why not believe in the power of God/Universe/{insert you favorite religious entity here} and that there is a power greater than or equal to western medicine.
Basically I take it all. Even the western medicine is "dispensed" with love. My oncologist doesn't hate me. He is giving me what he truly believes will help me. Same with the alternatives. Of course I'm not actually taking all the alternative therapies as I'm taking chemo. I have to believe in the chemo and not add all sorts of variables to the process. But when chemo is done and my next CT scan results come back, I might have to really investigate the alternatives. But probably not. I believe enduring four cycles of chemo is going to cure me. That is what I have to believe in right now.
I'm now planning a trip with a good friend to Key West in September. I told the oncologist that I'm going on this trip regardless of what happens. Of course September is the height of hurricane season. So I'll see if my current good luck streak holds out!
Had a doctor's appointment yesterday. Blood work looks very good. The doctor said I was handling the treatments very well. He looked surprised as he said this. May have been because I was in "logic" mode and was pushing to schedule the next round of treatment, the Nuelasta shot, and next doctor's appointment. I'm going to Idaho on July 2nd and was pushing the doctor to schedule his appointment around that. Basically if I'm doing well with this, I get to have a life also.
Monday was my hard day again. This time getting dizzy and head rushes. Just a few moments but enough to make me lay down. My energy level came back around Tuesday evening and gets better everyday.
Now to "Eating Dirt".
A good friend stopped by last night and brought me dirt from a church in Mexico. It is I guess "holy" dirt and cures anything. So, I have a dirt remedy, some kind of tea remedy, ginger, garlic, a Mexican cream, and some kind of supplement that I'm supposed to take.
Hmmm. I'm still letting western medicine take its course. But all these alternative therapies that have been suggested or given to me have a place also. By that I mean they are given/suggested out of love. Everyone wants to cure the cancer and are jumping into help. The problem with comparing western therapies to alternative therapies is proof. There are studies to back up western medicine and only anecdotal evidence for alternative therapies. But I believe that alternative/natural remedies have to have the belief quotient in order to work. This can't be tested in a lab. So if you believe eating dirt or massive amounts of garlic will cure the cancer, then it just might.
Consider the choice between taking natural supplements versus getting pump full of toxins. All things being equal, give me the garlic. But I've eaten garlic all my life and I still got cancer. Maybe I didn't eat enough.
Okay, get ready, a hippie moment:
What is the harm of sprinkling a few grains of holy dirt on some food? Ugh gross, right? What about injecting yourself with basically platinum, a poisonous metal? Someone gave me dirt that they believe in and have prayed over and it is "infused" with their love for me. Why reject the power of prayer? Why not believe in the power of God/Universe/{insert you favorite religious entity here} and that there is a power greater than or equal to western medicine.
Basically I take it all. Even the western medicine is "dispensed" with love. My oncologist doesn't hate me. He is giving me what he truly believes will help me. Same with the alternatives. Of course I'm not actually taking all the alternative therapies as I'm taking chemo. I have to believe in the chemo and not add all sorts of variables to the process. But when chemo is done and my next CT scan results come back, I might have to really investigate the alternatives. But probably not. I believe enduring four cycles of chemo is going to cure me. That is what I have to believe in right now.
I'm now planning a trip with a good friend to Key West in September. I told the oncologist that I'm going on this trip regardless of what happens. Of course September is the height of hurricane season. So I'll see if my current good luck streak holds out!
End of Cycle 2
6/6/2009
The 2nd cycle was a little harder than the first but not unbearable. I think it was the cold/flu I got the week before. More tired than the first week. Also had 2 days with hiccups. Nurses talked about prescribing Thorizine and Adavan. More pills. No. Stayed away from acidic foods (coffee, strawberries, etc) and did fine.
Best part of this cycle was having the two IV's put in during the week, both on the first try. The 2nd time the put in the IV (Thursday), I drank water and hot tea, but didn't drink as much water the day before. I did have them put on the heating pad on my arm before they attempted the insert.
Did pretty well during the week relying on my business partners. I would start working and get frustrated/angry (for no good reasons). Melissa and Scott picked up the slack for me.
Had energy Friday night. Maybe the Gatorade. Water gets pretty old and the Gatorade seems to hit the spot.
Going to get my hair trimmed down even further today. Patches started coming out. Not a big deal, but I will want my hair back!
Still have a little irritation with the surgery scar, but for the most part am walking around fine again.
The 2nd cycle was a little harder than the first but not unbearable. I think it was the cold/flu I got the week before. More tired than the first week. Also had 2 days with hiccups. Nurses talked about prescribing Thorizine and Adavan. More pills. No. Stayed away from acidic foods (coffee, strawberries, etc) and did fine.
Best part of this cycle was having the two IV's put in during the week, both on the first try. The 2nd time the put in the IV (Thursday), I drank water and hot tea, but didn't drink as much water the day before. I did have them put on the heating pad on my arm before they attempted the insert.
Did pretty well during the week relying on my business partners. I would start working and get frustrated/angry (for no good reasons). Melissa and Scott picked up the slack for me.
Had energy Friday night. Maybe the Gatorade. Water gets pretty old and the Gatorade seems to hit the spot.
Going to get my hair trimmed down even further today. Patches started coming out. Not a big deal, but I will want my hair back!
Still have a little irritation with the surgery scar, but for the most part am walking around fine again.
2nd Cycle
6/3/1968
I'm now on my 2nd cycle of chemo. The goal this week was to have the IV go in on the first try. After pestering numerous nurses the following seemed to work like a charm.
Day before chemo, drank about 64 - 80 oz of water.
Day of chemo in the morning had a cup of coffee, 20oz of water, and cup of hot tea. Wore long sleeve shirt and asked for a heating pad before the IV was put in. The trick was lots of fluids and keeping the forearm warm.
Loosing more of my hair. Now it is blotchy so I need to get in to get it trimmed further down. I do want my hair back, but I can live with hats for a while. It is funny, I have never really felt the breeze on my scalp.
Mom has been with me this week and that has been good. Nurses thought it was funny we were playing a dice game. It is nice to have her around.
So far this week things are more under control. By taking the Prilosec I only had a few hiccups on Tuesday as opposed to the first Tuesday where the hiccups/heartburn were out of control. I still take at least one Campazine (anti-nausea pill) which helps with the hiccups. Still a bit of steroid rage but I sense it pretty quickly. Slept 2 hours after getting home from treatment (after making a stop at a book store and the grocery store). Then slept pretty well during the night (up only once to go to the bathroom).
Getting to the point that I barely notice any surgery pain. Also the cold/flu I got last week is clearing up.
So, so far so good this week!
I'm now on my 2nd cycle of chemo. The goal this week was to have the IV go in on the first try. After pestering numerous nurses the following seemed to work like a charm.
Day before chemo, drank about 64 - 80 oz of water.
Day of chemo in the morning had a cup of coffee, 20oz of water, and cup of hot tea. Wore long sleeve shirt and asked for a heating pad before the IV was put in. The trick was lots of fluids and keeping the forearm warm.
Loosing more of my hair. Now it is blotchy so I need to get in to get it trimmed further down. I do want my hair back, but I can live with hats for a while. It is funny, I have never really felt the breeze on my scalp.
Mom has been with me this week and that has been good. Nurses thought it was funny we were playing a dice game. It is nice to have her around.
So far this week things are more under control. By taking the Prilosec I only had a few hiccups on Tuesday as opposed to the first Tuesday where the hiccups/heartburn were out of control. I still take at least one Campazine (anti-nausea pill) which helps with the hiccups. Still a bit of steroid rage but I sense it pretty quickly. Slept 2 hours after getting home from treatment (after making a stop at a book store and the grocery store). Then slept pretty well during the night (up only once to go to the bathroom).
Getting to the point that I barely notice any surgery pain. Also the cold/flu I got last week is clearing up.
So, so far so good this week!
Sick and Hair
5/27/2009
So it wasn't bone pain from the Nuelasta shot. I just got a cold. Need to get over this before chemo next week.
I may be starting to loose my hair today. Ran my hand through my head and came out with a lot of hair. My hair had started to feel "brittle" the past week and I was hoping this wouldn't happen. Oh well.
Okay, a special message to those who have mentioned shaving their head if I lost my hair.
While a very nice sentiment, if you shave your head, every time I see you it will remind me that I lost my hair. So don't shave your head for my sake. We'll see just how much hair I actually loose.
Wow, I keep having these positive thoughts and think I will get around the side effects. What the hell.
Went and got my head shaved. So far I guess it is okay. Not really happy about it, but better than watching my hair fall out, clump by clump. Waiting to see if even the stubble falls out. Still growing facial hair, but slower than usual.
So it wasn't bone pain from the Nuelasta shot. I just got a cold. Need to get over this before chemo next week.
I may be starting to loose my hair today. Ran my hand through my head and came out with a lot of hair. My hair had started to feel "brittle" the past week and I was hoping this wouldn't happen. Oh well.
Okay, a special message to those who have mentioned shaving their head if I lost my hair.
While a very nice sentiment, if you shave your head, every time I see you it will remind me that I lost my hair. So don't shave your head for my sake. We'll see just how much hair I actually loose.
Wow, I keep having these positive thoughts and think I will get around the side effects. What the hell.
Went and got my head shaved. So far I guess it is okay. Not really happy about it, but better than watching my hair fall out, clump by clump. Waiting to see if even the stubble falls out. Still growing facial hair, but slower than usual.
Bone Pain - 1 day
Quick Post: Looks like the bone pain only lasted one day. I took 2 Vicadin and a hot bath. The pain still may have been because of the yard work Saturday.
The pain was mild to moderate. Mainly just an ache bone feeling until I sneezed and then the sharp pains throughout my body.
The pain was mild to moderate. Mainly just an ache bone feeling until I sneezed and then the sharp pains throughout my body.
Yea and Owww!
5/24/2009
Well, first the yea part. Got to enjoy an adult relationship with Tyler Friday. Still trying to keep this blog "clean". Still have the incision "don't touch that" thing, but overall it was great. It had been to long.
Worked in the yard on Saturday, still feeling pretty good.
Then along comes Sunday. Wake up feeling fine. Have coffee and sit down in front of the computer. Got up to get my second cup of coffee. Owwww! What the hell was that? This is a whole body owww. At first thought it was from working in the yard Saturday.... sore muscles. But it didn't really feel like sore muscles. Oh shit, I think this is the bone pain from the Nuelasta shot last Monday. Thought I had gotten around that. The pain isn't constant if I don't move. Just sneezed and my whole body reacted. I'm going to see how long this lasts before taking one of the Vicadin.
So far it isn't horrible pain, just some sharp pains and a dull ache. Yeah, this is soooo much fun. Glad I'm basically healthy, I don't know how other people would deal with this. I was planning on trying to get back to the gym since my surgery pain was subsiding, but damn!
The pain is mainly in my upper legs. A little bit in the knees and shoulders. Holy shit, western medicine is making me an old man! ;-)
So, a couple of things to keep in mind. During chemo, the effects start around Wednesday with the slight nausea and general "unwell" feeling. By Friday my energy is sapped. Need to keep walking Toby and hopefully get back to the gym. Got my energy back by the following Tuesday. Felt great! Now, I think bone pain starts one week after the Nuelasta shot. I need to see how long this pain lasts. Hopefully only today.
Well, first the yea part. Got to enjoy an adult relationship with Tyler Friday. Still trying to keep this blog "clean". Still have the incision "don't touch that" thing, but overall it was great. It had been to long.
Worked in the yard on Saturday, still feeling pretty good.
Then along comes Sunday. Wake up feeling fine. Have coffee and sit down in front of the computer. Got up to get my second cup of coffee. Owwww! What the hell was that? This is a whole body owww. At first thought it was from working in the yard Saturday.... sore muscles. But it didn't really feel like sore muscles. Oh shit, I think this is the bone pain from the Nuelasta shot last Monday. Thought I had gotten around that. The pain isn't constant if I don't move. Just sneezed and my whole body reacted. I'm going to see how long this lasts before taking one of the Vicadin.
So far it isn't horrible pain, just some sharp pains and a dull ache. Yeah, this is soooo much fun. Glad I'm basically healthy, I don't know how other people would deal with this. I was planning on trying to get back to the gym since my surgery pain was subsiding, but damn!
The pain is mainly in my upper legs. A little bit in the knees and shoulders. Holy shit, western medicine is making me an old man! ;-)
So, a couple of things to keep in mind. During chemo, the effects start around Wednesday with the slight nausea and general "unwell" feeling. By Friday my energy is sapped. Need to keep walking Toby and hopefully get back to the gym. Got my energy back by the following Tuesday. Felt great! Now, I think bone pain starts one week after the Nuelasta shot. I need to see how long this pain lasts. Hopefully only today.
Energy - Nice to have
5/21/2009
I seemed to have my old energy back today. Woke up with that "conquer the world" feeling. Want to work in the yard, look at new cell phones, plan out business issues, on and on.
Had slight pains yesterday that may have been related to the Neulasta shot, but nothing severe. I am learning that during the chemo treatments I'll loose energy and feel a general malaise like thing. But the rebound is very nice.
I seemed to have my old energy back today. Woke up with that "conquer the world" feeling. Want to work in the yard, look at new cell phones, plan out business issues, on and on.
Had slight pains yesterday that may have been related to the Neulasta shot, but nothing severe. I am learning that during the chemo treatments I'll loose energy and feel a general malaise like thing. But the rebound is very nice.
The Rebound?
5/19/2009
Yesterday was a bit rough. The constiarrhea (my new word for constipation followed by immediate diarrhea) happened. But that was followed by a less rough morning and this afternoon feeling pretty good. Still moments of being tired but my body seems to feel better overall.
Went to the doctor yesterday for my checkup and Nuelasta shot. This shot is to make the bones produce more white blood cells and avoid neutropenia. An effort to replace those destroyed by chemo. Ahhhh, western medicine. May have bone pain by Wednesday. So far so good.
Was also loosing focus while talking to the doctor. Seemed hard to concentrate even when looking at my prepared questions.
I looked around at alternative therapies over the weekend. Still going with the 95% success rate with western medicine, but if at the end of chemo more needs to be done, I will seriously be considering alternatives. I'm pretty sure this will mostly, if not all, be beat at the end of chemo.
I'm also hoping that my "hump day" is 3 days after the end of a cycle. The doctor said everyone is different and has different amount of days before rebounding.
My mom is coming out for the next cycle of chemo. Basically I think she is going to see me go from good to bad while she is here. At least I should be able to reassure her that I rebound a few days later.
The business conference I missed seems to be going really well. I'm hoping that translates into revenue! So glad Melissa could still go. And yes, still bummed that I couldn't. But did I ever make the right decision! The conference would have been a disaster for me with the way I felt.
Yesterday was a bit rough. The constiarrhea (my new word for constipation followed by immediate diarrhea) happened. But that was followed by a less rough morning and this afternoon feeling pretty good. Still moments of being tired but my body seems to feel better overall.
Went to the doctor yesterday for my checkup and Nuelasta shot. This shot is to make the bones produce more white blood cells and avoid neutropenia. An effort to replace those destroyed by chemo. Ahhhh, western medicine. May have bone pain by Wednesday. So far so good.
Was also loosing focus while talking to the doctor. Seemed hard to concentrate even when looking at my prepared questions.
I looked around at alternative therapies over the weekend. Still going with the 95% success rate with western medicine, but if at the end of chemo more needs to be done, I will seriously be considering alternatives. I'm pretty sure this will mostly, if not all, be beat at the end of chemo.
I'm also hoping that my "hump day" is 3 days after the end of a cycle. The doctor said everyone is different and has different amount of days before rebounding.
My mom is coming out for the next cycle of chemo. Basically I think she is going to see me go from good to bad while she is here. At least I should be able to reassure her that I rebound a few days later.
The business conference I missed seems to be going really well. I'm hoping that translates into revenue! So glad Melissa could still go. And yes, still bummed that I couldn't. But did I ever make the right decision! The conference would have been a disaster for me with the way I felt.
End of Cycle 1
5/15/2009
So ends my first week of chemo. Side effects: Heartburn, hiccups, tired (fatigue seems a little strong), maybe a touch of nausea (but didn't wait to find out). Worst is keeping the IV in over night Mon - Wed and Thur - Fri. Finished treatment, went to lunch with Dane, went to pharmacy to pick up Prilosec and Emend pills. Then took a hot bath (to continue healing the surgery scar) and shower.
Have an appointment next Monday to do blood work, meet with the doctor, take my pill to boost my white blood cells, and schedule my next cycle of treatments.
Lesson learned: Just a long haul sickness and my treatments will be done in July. Still nothing compared to what others have to go through. Except for the mild side-effects and surgery, I'm not in pain. It is just the situation and wanting not to be there.
Friday night sleep the worst. Saturday not to bad.
So ends my first week of chemo. Side effects: Heartburn, hiccups, tired (fatigue seems a little strong), maybe a touch of nausea (but didn't wait to find out). Worst is keeping the IV in over night Mon - Wed and Thur - Fri. Finished treatment, went to lunch with Dane, went to pharmacy to pick up Prilosec and Emend pills. Then took a hot bath (to continue healing the surgery scar) and shower.
Have an appointment next Monday to do blood work, meet with the doctor, take my pill to boost my white blood cells, and schedule my next cycle of treatments.
Lesson learned: Just a long haul sickness and my treatments will be done in July. Still nothing compared to what others have to go through. Except for the mild side-effects and surgery, I'm not in pain. It is just the situation and wanting not to be there.
Friday night sleep the worst. Saturday not to bad.
Trip Cancellation
5/15/2009
Chemo is starting to wear me out. Main effect is begin tired and just slightly ill feeling. Still walked Toby to the library. Then went to bed last night about 8:30pm, got up around 6 am. I was up a couple of times last night with heartburn and took a Campazine pill once.
I'm not going to go on the California trip after all. I have to take a shot Monday for my white blood cells and with the way I've been feeling, it just doesn't make sense anymore. BUMMER! I'm going to miss my road trip with Melissa and I really think this business conference was going to be great.
Bill sent me pictures of my scar. I was going to put them up but you can barely see the scar. With all the chemo, I forgot to mention that the scar/leg pain is steadily getting better. Still not gone, but much better.
Still the most irritating aspect of chemo is wearing the IV for days. There was discussion of a port device but it requires surgery etc., so I'm going to wait it out and see how things go.
Chemo is starting to wear me out. Main effect is begin tired and just slightly ill feeling. Still walked Toby to the library. Then went to bed last night about 8:30pm, got up around 6 am. I was up a couple of times last night with heartburn and took a Campazine pill once.
I'm not going to go on the California trip after all. I have to take a shot Monday for my white blood cells and with the way I've been feeling, it just doesn't make sense anymore. BUMMER! I'm going to miss my road trip with Melissa and I really think this business conference was going to be great.
Bill sent me pictures of my scar. I was going to put them up but you can barely see the scar. With all the chemo, I forgot to mention that the scar/leg pain is steadily getting better. Still not gone, but much better.
Still the most irritating aspect of chemo is wearing the IV for days. There was discussion of a port device but it requires surgery etc., so I'm going to wait it out and see how things go.
Chemo continues
5/12/2009
This morning got up around 3:40am and did some work. I started on the blog today and published a Welcome blog.
Drinking some coffee, see if a bowel movement is going to happen.
Driving myself to chemo today. Still a little disconcerting but will get used to it as time goes on.
Drive to chemo was fine. Did some work, watched a movie on the laptop. Didn't eat as much as Monday. Symptom today was hiccups/heartburn. Drank some baking soda/cold water to help. Helped for a little bit. Deep breaths and drinking water seem to help the most.
Oh and another symptom has come up. I think I might have had two cases of “rhoid rage”. They gave me steroids Monday and with Mom and Melissa I got angry. Not at them, but while talking to them. I was trying to cut the conversation off because I knew I was angry and I'm not sure they understood what was going on.
It has been 3 days of no cigarettes. Well...., start the clock again. I had one cigarette in the afternoon. But that was it.
5/13/2009
Wednesday: Can't wait to get this IV out, so I can take a real shower when I get home. Taking modified showers since the surgery is driving me nuts (no pun intended).
The heartburn/hiccups continue and I'm starting to have that "I don't want to go" feeling. Tired and ache. Really starting to wonder if going to the IUG Conference is going to happen. I'm trying to get more rest and figure out if by Monday some of the side-effects wear off a bit. I can't see spending money on going if I end up just laying in a hotel. We'll see what Thursday brings. When I weighed in today I was up to 192 pounds. Looks like I'm getting "chemo fat". All the fluids pumping in and hanging out. "two more days, two more days, two more days". Then a two week break!
This morning got up around 3:40am and did some work. I started on the blog today and published a Welcome blog.
Drinking some coffee, see if a bowel movement is going to happen.
Driving myself to chemo today. Still a little disconcerting but will get used to it as time goes on.
Drive to chemo was fine. Did some work, watched a movie on the laptop. Didn't eat as much as Monday. Symptom today was hiccups/heartburn. Drank some baking soda/cold water to help. Helped for a little bit. Deep breaths and drinking water seem to help the most.
Oh and another symptom has come up. I think I might have had two cases of “rhoid rage”. They gave me steroids Monday and with Mom and Melissa I got angry. Not at them, but while talking to them. I was trying to cut the conversation off because I knew I was angry and I'm not sure they understood what was going on.
It has been 3 days of no cigarettes. Well...., start the clock again. I had one cigarette in the afternoon. But that was it.
5/13/2009
Wednesday: Can't wait to get this IV out, so I can take a real shower when I get home. Taking modified showers since the surgery is driving me nuts (no pun intended).
The heartburn/hiccups continue and I'm starting to have that "I don't want to go" feeling. Tired and ache. Really starting to wonder if going to the IUG Conference is going to happen. I'm trying to get more rest and figure out if by Monday some of the side-effects wear off a bit. I can't see spending money on going if I end up just laying in a hotel. We'll see what Thursday brings. When I weighed in today I was up to 192 pounds. Looks like I'm getting "chemo fat". All the fluids pumping in and hanging out. "two more days, two more days, two more days". Then a two week break!
Chemo Begins - Day 1
5/11/2009
Starting chemo today. Nurse tried two attempts in my left arm, finally got the IV in my right arm. This pissed me off. Got very frustrated and am not jazzed up about doing this. So, yeah, I'm having a moment of “aww shit!”. After the second attempt had the feeling that I was just going to walk out. Now starting to relax a bit and let things ride.
Keep going to the bathroom with all the fluids pumped in and drinking water.
Got here at 8:00am, about to leave at 1pm. (6 hrs). Tuesday - Friday should be about 3 – 4 hours.
This isn't bad. Not having any effects yet. Think I can drive myself. Going to leave the IV in for the next several days. Talk of a port. It is surgically implanted in the chest. I don't think I want to do that.
Had a cheese burger for lunch after chemo.
Went to the pharmacy. Still didn't have my Emend pack. Said they were getting it and would deliver to my house. 1 ½ hours later it was delivered. It is good to have a real pharmacy.
Walked with Toby and Melissa. Walking better, each day the leg/incision area pain gets less and less.
Feeling a little tired. Ended up falling asleep on the couch for about an hour while Tyler got Chipolte burritos for dinner.
Ate most of the burrito (they keep saying....eat when you can), and Tyler made an Orange/Banana smoothie. After the smoothie my stomach started to kind of feel strange. Not quite full on nausea, but enough to put me on alert. After a bit I decided to take the Campazine (the first anti-nausea drug to take/try). After about 30 minutes (and a lot of walking/pacing), my stomach felt better.
Went to bed and slept on/off. They also gave me steroids in one of the IVs and said I may have some sleeping issues. When I did sleep it was deep and don't remember any dreams.
Starting chemo today. Nurse tried two attempts in my left arm, finally got the IV in my right arm. This pissed me off. Got very frustrated and am not jazzed up about doing this. So, yeah, I'm having a moment of “aww shit!”. After the second attempt had the feeling that I was just going to walk out. Now starting to relax a bit and let things ride.
Keep going to the bathroom with all the fluids pumped in and drinking water.
Got here at 8:00am, about to leave at 1pm. (6 hrs). Tuesday - Friday should be about 3 – 4 hours.
This isn't bad. Not having any effects yet. Think I can drive myself. Going to leave the IV in for the next several days. Talk of a port. It is surgically implanted in the chest. I don't think I want to do that.
Had a cheese burger for lunch after chemo.
Went to the pharmacy. Still didn't have my Emend pack. Said they were getting it and would deliver to my house. 1 ½ hours later it was delivered. It is good to have a real pharmacy.
Walked with Toby and Melissa. Walking better, each day the leg/incision area pain gets less and less.
Feeling a little tired. Ended up falling asleep on the couch for about an hour while Tyler got Chipolte burritos for dinner.
Ate most of the burrito (they keep saying....eat when you can), and Tyler made an Orange/Banana smoothie. After the smoothie my stomach started to kind of feel strange. Not quite full on nausea, but enough to put me on alert. After a bit I decided to take the Campazine (the first anti-nausea drug to take/try). After about 30 minutes (and a lot of walking/pacing), my stomach felt better.
Went to bed and slept on/off. They also gave me steroids in one of the IVs and said I may have some sleeping issues. When I did sleep it was deep and don't remember any dreams.
Days befoe Treatment
5/8/2009
Went to the Newberry office, Alliance office, lunch, and back home. I think my surgery pain is finally subsiding. Seems to feel better and better each day for the past couple of days.
Got next week lined up with people to take me to treatment. Still holding out hope that I will be able to drive myself.
I've opted-out of side-effects. Don't want them and not going to have them!
5/9/2009
Dane came over and showed me the blog she set up. Tyler told Rich that I needed to get my haircut and that Rich needed to fit me in since, well, you know, I have Cancer. :-) Made me laugh. Dane went with me to the haircut. Rich slipped and buzzed a small spot on the side of my head. I told him I didn't want my cancer haircut just yet. Did a lot of laughing and making jokes.
Dane and I went to Target to get some things for next week. Snacks, water flavor crystals, and yes tried underwear again. Dane and I had underwear out on the the floor of Target comparing medium to large. Told her if buying large didn't work this time that was it!
Tried on the large underwear. Finally!! I was about to take a Vicadin, but once I achieved separation, I decided not to.
Went to Tyler's B-day party at Kelley's. So I had a busy Saturday and still no Vicadin. Bill took a picture of my scar. Can barely see it. We discussed whether or not to take a picture of my scrotum so that other guys can see that there really seems to be no visual difference. I'm still thinking about that. Beginning to understand why I couldn't find any pictures out there!
5/10/2009
I have been sitting at the computer since 5:30 am working. Doing very well with the pain.
Also slapped a nicotine patch on my arm this morning. I don't want to smoke during chemo and am hoping this will be it for cigarettes. I'm amazed at how much the patch is helping. I didn't think I had as many nicotine cravings vs psych cravings. I've only had 3 psych cravings so far. I finished some code (time to smoke), I finished my shower (time to smoke), I called Scott about some code (time to smoke). I'm very positive about quitting today.
Okay, needed to update the journal, back to work (or rest), well laundry first.
Took the nicotine patch off. Seemed to be giving me a bit of diarrhea.
Went to the Newberry office, Alliance office, lunch, and back home. I think my surgery pain is finally subsiding. Seems to feel better and better each day for the past couple of days.
Got next week lined up with people to take me to treatment. Still holding out hope that I will be able to drive myself.
I've opted-out of side-effects. Don't want them and not going to have them!
5/9/2009
Dane came over and showed me the blog she set up. Tyler told Rich that I needed to get my haircut and that Rich needed to fit me in since, well, you know, I have Cancer. :-) Made me laugh. Dane went with me to the haircut. Rich slipped and buzzed a small spot on the side of my head. I told him I didn't want my cancer haircut just yet. Did a lot of laughing and making jokes.
Dane and I went to Target to get some things for next week. Snacks, water flavor crystals, and yes tried underwear again. Dane and I had underwear out on the the floor of Target comparing medium to large. Told her if buying large didn't work this time that was it!
Tried on the large underwear. Finally!! I was about to take a Vicadin, but once I achieved separation, I decided not to.
Went to Tyler's B-day party at Kelley's. So I had a busy Saturday and still no Vicadin. Bill took a picture of my scar. Can barely see it. We discussed whether or not to take a picture of my scrotum so that other guys can see that there really seems to be no visual difference. I'm still thinking about that. Beginning to understand why I couldn't find any pictures out there!
5/10/2009
I have been sitting at the computer since 5:30 am working. Doing very well with the pain.
Also slapped a nicotine patch on my arm this morning. I don't want to smoke during chemo and am hoping this will be it for cigarettes. I'm amazed at how much the patch is helping. I didn't think I had as many nicotine cravings vs psych cravings. I've only had 3 psych cravings so far. I finished some code (time to smoke), I finished my shower (time to smoke), I called Scott about some code (time to smoke). I'm very positive about quitting today.
Okay, needed to update the journal, back to work (or rest), well laundry first.
Took the nicotine patch off. Seemed to be giving me a bit of diarrhea.
The Oncologist
I have been told many, many times by many people this is the most important step and choice. You have to like and trust your oncologist. Otherwise find another.
5/7/2009
Have Warren working on the doors, electrician installing lights by the driveway, some other guy here also. Busy morning with a client. Melissa thinks we are insane.
Got my records from TUCC. Going to the oncologist meeting in about 15 minutes. Busy, busy morning and got a little tired but rebounded pretty quick.
Well, okay....let's go!
Was nervous waiting to be seen at the Rocky Mountain Cancer Center. Dropped my wallet while trying to put my license and insurance card back in. Told the receptionist that I'm must be a bit nervous. She smiles and said everyone is, but things will be fine.
Met with Dr. Bergen and Jess (triage nurse). Both Tyler and I like them very much.
I like how he thinks. Considered a pet scan but then determined along with Tyler that it would be in-conclusive and a waste of time.
Glad Tyler went with me!
The doctor is about our age, probably a bit younger. Great personality. Went through the whole process from staging to post-treatment. Has interned with the local specialist here in Colorado.
Tyler brought up his concern that my neck was swollen on one side. The doctor immediately took us to the exam room and checked it out. I thought it was great that he addressed Tyler's concern immediately.
The doctor also convinced me that we need to start immediately. I'm Stage III A, but that I'm still at a Good Risk level for treatment. He said I'm no where close to Lance Armstrong. Yeah, I like this doctor. I told him about the IUG Conference and that it was important to me that I attend. He said he thought it would be more important for me to make it to 80 years old. Well, okay, point taken. He is serious when he needs to be, laughs at the appropriate moments, and passed my tests.
My treatment is going to be the EP Treatment which is Etoposide/Cisplatin. The treatment schedule is M-F, (6 hours Monday, 4 hours T-F), followed by 2 weeks chemo holiday. This will repeat 3 times through July. Chicago conference is definitely out. Should make it to Idaho and hoping to make it to IUG Conference. The IUG trip happens Saturday, one day after my Friday chemo treatment.
Jess, the nurse, met with me for another hour and a half going over meds, procedures, what to watch for etc. I asked if I was being foolish about seeing how I felt Thursday and making a determination about going to California. She told me I would be able to make that determination and it wasn't foolish. Just stay hydrated, eat, take my pills.
Everyone at the treatment center has a good personality and will lead me through this just fine. A couple of times I had massive info overload. Jess told me not to worry, they will step me through this.
Melissa is worried about me going on the IUG trip. My deal with her is that I will be 100% honest with myself and that it isn't just me in the car. Her side of the bargain is to truly hope that I can go.
Mom asked if she should come out right away. No. It will stress her out, Tyler out, and most importantly stress me out.
Nurse gave me my prescriptions for anti-nausea pills. Decided to go to the Wheat Ridge Pharmacy instead of a supermarket or chain pharmacy. This will be one of the best decisions I make during this whole process!
5/7/2009
Have Warren working on the doors, electrician installing lights by the driveway, some other guy here also. Busy morning with a client. Melissa thinks we are insane.
Got my records from TUCC. Going to the oncologist meeting in about 15 minutes. Busy, busy morning and got a little tired but rebounded pretty quick.
Well, okay....let's go!
Was nervous waiting to be seen at the Rocky Mountain Cancer Center. Dropped my wallet while trying to put my license and insurance card back in. Told the receptionist that I'm must be a bit nervous. She smiles and said everyone is, but things will be fine.
Met with Dr. Bergen and Jess (triage nurse). Both Tyler and I like them very much.
I like how he thinks. Considered a pet scan but then determined along with Tyler that it would be in-conclusive and a waste of time.
Glad Tyler went with me!
The doctor is about our age, probably a bit younger. Great personality. Went through the whole process from staging to post-treatment. Has interned with the local specialist here in Colorado.
Tyler brought up his concern that my neck was swollen on one side. The doctor immediately took us to the exam room and checked it out. I thought it was great that he addressed Tyler's concern immediately.
The doctor also convinced me that we need to start immediately. I'm Stage III A, but that I'm still at a Good Risk level for treatment. He said I'm no where close to Lance Armstrong. Yeah, I like this doctor. I told him about the IUG Conference and that it was important to me that I attend. He said he thought it would be more important for me to make it to 80 years old. Well, okay, point taken. He is serious when he needs to be, laughs at the appropriate moments, and passed my tests.
My treatment is going to be the EP Treatment which is Etoposide/Cisplatin. The treatment schedule is M-F, (6 hours Monday, 4 hours T-F), followed by 2 weeks chemo holiday. This will repeat 3 times through July. Chicago conference is definitely out. Should make it to Idaho and hoping to make it to IUG Conference. The IUG trip happens Saturday, one day after my Friday chemo treatment.
Jess, the nurse, met with me for another hour and a half going over meds, procedures, what to watch for etc. I asked if I was being foolish about seeing how I felt Thursday and making a determination about going to California. She told me I would be able to make that determination and it wasn't foolish. Just stay hydrated, eat, take my pills.
Everyone at the treatment center has a good personality and will lead me through this just fine. A couple of times I had massive info overload. Jess told me not to worry, they will step me through this.
Melissa is worried about me going on the IUG trip. My deal with her is that I will be 100% honest with myself and that it isn't just me in the car. Her side of the bargain is to truly hope that I can go.
Mom asked if she should come out right away. No. It will stress her out, Tyler out, and most importantly stress me out.
Nurse gave me my prescriptions for anti-nausea pills. Decided to go to the Wheat Ridge Pharmacy instead of a supermarket or chain pharmacy. This will be one of the best decisions I make during this whole process!
The Trials Continue
4/29/2009
Went in for a CT scan of abdomen and pelvis region. Very fun and interesting. Like a science field trip. Downed the 2 bottles of contrast in 30 seconds, then had the injection of I think iodine. Interesting feeling coursing through my veins.
Talked to the surgeon and it looks like the lymph nodes near the groin are enlarged. He said an option would be surgery to cut out the enlarged lymph nodes. So a 12 inch vertical scar on my abdomen and the risk of never ejaculating again due to nerve damage. Ummm, NO.
Talked to Mom, Claire, and John. Left message for Dad. Discussion with John was not so good. He was tired after driving all night and was in the cynical, conspiracy mode and I wasn't. There was a lot of silence from my end. Keeping everyone up to date is going to get old. People actually want to be updated, but the frequency of the update needs to spread out a little more. I'm sure it will as this event continues on.
5/1/2009
The feeling in my legs and around my incision/penis is I think nerves repairing themselves. It is a hot tingly sensation like a rug burn. Bought no-show briefs (bikini-briefs) to keep the left side of the scrotum from sticking to my leg. Irritating to the extreme. It is the worst part of the surgery. And so, no, I don't want another one.
Tyler is getting worn out but is still joking. He is definitely going to be my “take care of things” guy. Very protective. Wants to go to the next appointments.
Registered with the Lance Armstrong Foundation web site. They have tools to let you enter your info (blood count, type of testicular cancer, etc.), that will then lead you to info on options for treatments and what to expect. got my blood work info today from the surgeons office. The Urology Center is great. One spot, down the street basically, and get everything handled there.
Becky S. sent me a baklava package. It is so good. There was no labeling of who it was from so I didn't know Becky sent it. Then talked to her and she asked me if I had gotten the baklava yet. She had emailed me days ago telling me about the gift and I even responded to the email. Completely forgot! I don't think that was due to meds, just the situation being overwhelming.
Broke down today on the way to Newberry. Think it finally caught up with me that I may just indeed have cancer. Not a long crying spell but enough to let some of the pressure out. I know I'll be fine and I'm not really scared. Just a lot of info to process quickly and the unknown.
I truly have great people around me. It is great to have the problem of how many people I can update in one day. Some people are starting to call me instead of waiting for me. Good move. It is actually nicer for them to call instead of me feeling like I'm giving the “cancer report”.
Even though I have the tingly pain, I know I'm getting better surgery wise. I can sit longer, the incision area doesn't hurt to bad. This is the time when healing really begins. The first couple of days I was still flying high on anesthesia and Percoset. But it is healing and I can still can get an erection although I'm still working on touching myself. The scrotum doesn't look bad from a glance, but when warm, my right (okay my only) testicle hangs lower than it used to. I'm hoping some time next week I can take the next step in my "sexual healing".. I would really like to get over this! Was able to finally take a bath........ Ahhhh. Nicole and Dave sent me bubble bath. The hot bath water is better than the Percoset/Vicodin. I plan on taking one every day!
I did get a Vicodin prescription. I was taking to much of the Percoset at the beginning. The Vicodin helps with that "rug-burn, tingly" sensation.
Next appointment is Tuesday for my upper body CT scan. Looks like that is my answer from the radiologist. Lymphs in the abdomen are large enough to check elsewhere. Fingers are crossed for chemo. Don't want surgery or radiation.
Also looks like that things are proceeding slowly enough that I'll make my IUG Conference trip.
5/2/2009
Starting reading cancer.net/testicular stuff. Am not so freaked out about the no-ejaculating risk of surgery. I supposedly would still have an erection and orgasm, just wouldn't produce semen/cum. I still don't want to have surgery though. About 6 weeks recovery time.
Also read more about chemotherapy and met Jeremy for coffee. He loaned me his Patient Treatment Notebook he got in Oregon. Very helpful and will be a good resource. While reading the cancer.net stuff, it gave a description of the chemotherapy used. Well, this might be even more intensive than I thought. 3 cycles that are 3 weeks each. With the first five days of each cycle taking 6 hours each day. Now I am hoping I'm reading that wrong. I'm sure I'm reading this wrong. I'm putting that thought off until I talk to the oncologist. Man I am now hyper to talk to the oncologist. I want to be done with the surgeon.
Went to Target again to buy slightly different underwear. The type I bought did the trick of separating my scrotum from my leg, but damn, the “basket” portion of the underwear was to small. I don't like everything folded into itself. The underwear I bought today so far is much better. I bought low-rise briefs.
5/3/2009
Felt better today up to about 2:30pm. Lied down in the bed and slept deeply. This surgery stuff sucks. I want to go to the gym.
People are so nice. A neighbor brought over a cake that his mom made for me. The father had asked Tyler how are vacation went because he thought we went away due to all the people coming to the house.
I'm not really amazed or shocked how good/nice people are, but it is always amazing in action.
5/4/2009
Woke up with anxiety. More about my favorite topic.... money. Also the release of client code.
Anyway, read some more info about treatment options. Looks like I might be able to get away with just chemo and not the surgery. That is my wish.
Starting to have some mortality thoughts. Not depressing thoughts, just what ifs. Ugh, again I think this is going to be harder than I was originally thinking.
5/5/2009
Felt a lot better this morning when it comes to my leg nerve pain. Still starting to hurt again around 10 am. Went to my “couch” office.
I was able to finally take the next step in my sexual healing. Yeah!! Played one of the DVDs DJ got me. Felt like I was in my teens again. This was a relief although I still need the pain to subside more before I'll feel really comfortable.
It is great having the friends and family I do. Each one satisfies a particular need.
A sexual therapist. Gets me porn and is the one I can really talk to about what is happening “down there”.
My cancer therapist. The friend that has been through this and knows what this is like emotionally and medically.
My knight. Taking care of things is his specialty. Keeps the house going and wants to support me as I go through this. Thing is I know he is worried and this is taking a toll on him also. So I don't need him to fuss over me, just handle day to day things.
My protector. So logical and caring and would be my bouncer if I need it (even from long distances). Willing to make calls so I don't have to and block calls if she can.
My alternative/cynical guys. In their own way they are very concerned/worried, but want to put up that tough guy exterior. Want to explore ways outside the western medicine box.
Mom – She will be with me every single step of the way. My humorist, my logical person, my friend, my intimate, ..... my mom.
Cheerleaders. Penis cake (with missing ball), mystical crystals and rocks, spiritual, Positive thinking. "You can do it". Like I said cheerleaders. These you want around a lot.
Big Sisters/Mothers. Tough. Doesn't ever buy to much of my B.S., but also worried about me.
Unofficial Experts - They have been through this second hand but close enough that you can have a easy discussion about the medical/technical things you are going through.
Worriers. It is appreciated that people are worried about you. But if you are going to get through all this and keep you spirits up, you have to be strong with these types. To drag yourself down into a "woe is me" place will make things worse.
Had my upper chest CT Scan and met with Surgeon. Now on to oncologist.
Got angry/lost temper when calling people. Decided I was done with calling a whole list of people. Dane is setting up this blog for me to start posting.
Had a moment with Tyler today about Toby (our dog). Went and took my bath. After the bath Tyler hugged me and told me he loved me. This is not going to be an easy going summer, is it?
Went in for a CT scan of abdomen and pelvis region. Very fun and interesting. Like a science field trip. Downed the 2 bottles of contrast in 30 seconds, then had the injection of I think iodine. Interesting feeling coursing through my veins.
Talked to the surgeon and it looks like the lymph nodes near the groin are enlarged. He said an option would be surgery to cut out the enlarged lymph nodes. So a 12 inch vertical scar on my abdomen and the risk of never ejaculating again due to nerve damage. Ummm, NO.
Talked to Mom, Claire, and John. Left message for Dad. Discussion with John was not so good. He was tired after driving all night and was in the cynical, conspiracy mode and I wasn't. There was a lot of silence from my end. Keeping everyone up to date is going to get old. People actually want to be updated, but the frequency of the update needs to spread out a little more. I'm sure it will as this event continues on.
5/1/2009
The feeling in my legs and around my incision/penis is I think nerves repairing themselves. It is a hot tingly sensation like a rug burn. Bought no-show briefs (bikini-briefs) to keep the left side of the scrotum from sticking to my leg. Irritating to the extreme. It is the worst part of the surgery. And so, no, I don't want another one.
Tyler is getting worn out but is still joking. He is definitely going to be my “take care of things” guy. Very protective. Wants to go to the next appointments.
Registered with the Lance Armstrong Foundation web site. They have tools to let you enter your info (blood count, type of testicular cancer, etc.), that will then lead you to info on options for treatments and what to expect. got my blood work info today from the surgeons office. The Urology Center is great. One spot, down the street basically, and get everything handled there.
Becky S. sent me a baklava package. It is so good. There was no labeling of who it was from so I didn't know Becky sent it. Then talked to her and she asked me if I had gotten the baklava yet. She had emailed me days ago telling me about the gift and I even responded to the email. Completely forgot! I don't think that was due to meds, just the situation being overwhelming.
Broke down today on the way to Newberry. Think it finally caught up with me that I may just indeed have cancer. Not a long crying spell but enough to let some of the pressure out. I know I'll be fine and I'm not really scared. Just a lot of info to process quickly and the unknown.
I truly have great people around me. It is great to have the problem of how many people I can update in one day. Some people are starting to call me instead of waiting for me. Good move. It is actually nicer for them to call instead of me feeling like I'm giving the “cancer report”.
Even though I have the tingly pain, I know I'm getting better surgery wise. I can sit longer, the incision area doesn't hurt to bad. This is the time when healing really begins. The first couple of days I was still flying high on anesthesia and Percoset. But it is healing and I can still can get an erection although I'm still working on touching myself. The scrotum doesn't look bad from a glance, but when warm, my right (okay my only) testicle hangs lower than it used to. I'm hoping some time next week I can take the next step in my "sexual healing".. I would really like to get over this! Was able to finally take a bath........ Ahhhh. Nicole and Dave sent me bubble bath. The hot bath water is better than the Percoset/Vicodin. I plan on taking one every day!
I did get a Vicodin prescription. I was taking to much of the Percoset at the beginning. The Vicodin helps with that "rug-burn, tingly" sensation.
Next appointment is Tuesday for my upper body CT scan. Looks like that is my answer from the radiologist. Lymphs in the abdomen are large enough to check elsewhere. Fingers are crossed for chemo. Don't want surgery or radiation.
Also looks like that things are proceeding slowly enough that I'll make my IUG Conference trip.
5/2/2009
Starting reading cancer.net/testicular stuff. Am not so freaked out about the no-ejaculating risk of surgery. I supposedly would still have an erection and orgasm, just wouldn't produce semen/cum. I still don't want to have surgery though. About 6 weeks recovery time.
Also read more about chemotherapy and met Jeremy for coffee. He loaned me his Patient Treatment Notebook he got in Oregon. Very helpful and will be a good resource. While reading the cancer.net stuff, it gave a description of the chemotherapy used. Well, this might be even more intensive than I thought. 3 cycles that are 3 weeks each. With the first five days of each cycle taking 6 hours each day. Now I am hoping I'm reading that wrong. I'm sure I'm reading this wrong. I'm putting that thought off until I talk to the oncologist. Man I am now hyper to talk to the oncologist. I want to be done with the surgeon.
Went to Target again to buy slightly different underwear. The type I bought did the trick of separating my scrotum from my leg, but damn, the “basket” portion of the underwear was to small. I don't like everything folded into itself. The underwear I bought today so far is much better. I bought low-rise briefs.
5/3/2009
Felt better today up to about 2:30pm. Lied down in the bed and slept deeply. This surgery stuff sucks. I want to go to the gym.
People are so nice. A neighbor brought over a cake that his mom made for me. The father had asked Tyler how are vacation went because he thought we went away due to all the people coming to the house.
I'm not really amazed or shocked how good/nice people are, but it is always amazing in action.
5/4/2009
Woke up with anxiety. More about my favorite topic.... money. Also the release of client code.
Anyway, read some more info about treatment options. Looks like I might be able to get away with just chemo and not the surgery. That is my wish.
Starting to have some mortality thoughts. Not depressing thoughts, just what ifs. Ugh, again I think this is going to be harder than I was originally thinking.
5/5/2009
Felt a lot better this morning when it comes to my leg nerve pain. Still starting to hurt again around 10 am. Went to my “couch” office.
I was able to finally take the next step in my sexual healing. Yeah!! Played one of the DVDs DJ got me. Felt like I was in my teens again. This was a relief although I still need the pain to subside more before I'll feel really comfortable.
It is great having the friends and family I do. Each one satisfies a particular need.
A sexual therapist. Gets me porn and is the one I can really talk to about what is happening “down there”.
My cancer therapist. The friend that has been through this and knows what this is like emotionally and medically.
My knight. Taking care of things is his specialty. Keeps the house going and wants to support me as I go through this. Thing is I know he is worried and this is taking a toll on him also. So I don't need him to fuss over me, just handle day to day things.
My protector. So logical and caring and would be my bouncer if I need it (even from long distances). Willing to make calls so I don't have to and block calls if she can.
My alternative/cynical guys. In their own way they are very concerned/worried, but want to put up that tough guy exterior. Want to explore ways outside the western medicine box.
Mom – She will be with me every single step of the way. My humorist, my logical person, my friend, my intimate, ..... my mom.
Cheerleaders. Penis cake (with missing ball), mystical crystals and rocks, spiritual, Positive thinking. "You can do it". Like I said cheerleaders. These you want around a lot.
Big Sisters/Mothers. Tough. Doesn't ever buy to much of my B.S., but also worried about me.
Unofficial Experts - They have been through this second hand but close enough that you can have a easy discussion about the medical/technical things you are going through.
Worriers. It is appreciated that people are worried about you. But if you are going to get through all this and keep you spirits up, you have to be strong with these types. To drag yourself down into a "woe is me" place will make things worse.
Had my upper chest CT Scan and met with Surgeon. Now on to oncologist.
Got angry/lost temper when calling people. Decided I was done with calling a whole list of people. Dane is setting up this blog for me to start posting.
Had a moment with Tyler today about Toby (our dog). Went and took my bath. After the bath Tyler hugged me and told me he loved me. This is not going to be an easy going summer, is it?
Post Surgery - Getting Used to the New Me
Wednesday, April 21, 2009
I woke up at 4am, turned on the coffee, and went right back to bed until 6:30am.
Worked for about 3-4 hours. Had Melissa come over so I could take a shower while having someone in the house. My, my isn't she the bossy one. Kept telling me to lay down and take it easy. Finally I did and of course fell asleep.
Got a call from the surgeon around 5pm. He was surprised I didn't have any swelling. Also said they found both types of testicular cancer, and that they were completely segregated from each other, which he has never seen before. I asked if I could get a book deal. The surgeon was very upbeat and felt like we caught things in time and this may be over. I have a CT scan next Wednesday to confirm. Fingers are crossed that it didn't spread and I won't have to go through treatment. Mom asked what are the two types of cancer. I don't know and don't want to know. I'm not going to give this more power than it already has, and with the high success rate, I'm going to let the medical professionals do their thing.
Bill and Heidi brought over a sensual cake. Had a penis on top with just one testicle. Very funny, but disturbing to both Tyler and me (the gay guys). Bill saw our expression and assured us that by eating the cake it wouldn't make us gay.
I made a comment to a few people that if you want to see how many friends you have, get cancer. The calls I've made and received have been numerous. Including emails. My “support” group is very large. Tyler's family, my family, our friends. All are pulling for me or praying for me. Melissa even has the Denver Seminary praying for me. Everyone wants me to take it easy, and I am trying as best as possible, but still have to work during this if clients are going to pay invoices. I started lying on the couch with my laptop as sitting in the office chair starts to get painful.
Saturday, April 25, 2009.
Starting to get a bit restless over the past couple of days. Still happy with the prognosis from the surgeon, but it has now shifted my thinking away from possible chemo/radiation to what has actually happened. I'm down to one percoset per day and that seems to be fine.
## Adult Section through end of post ##
The issue now is having one testicle in my scrotum. While looking in a mirror there isn't much difference, I am starting to come to terms with this new fact. I'm apprehensive to touch myself. My penis is fine and I still can get erections, but I am having a mentally hard time touching my scrotum. I'm forcing myself to however. I don't like how it feels. For many days I could still “feel” my left testicle. The pain that I have had was gone, but because I wasn't touching my scrotum, my brain still was registering two testicles. While I kept saying that this is nothing compared to a woman loosing a breast (and it still isn't), something else is going on. This isn't vanity. This is I've lost a part of my body that I was intimately aware of. And I mean intimately as in 40 years!. I can't “grab my balls” like I used to and it feels odd. My right testicle pulls the scrotum down in a more oblong kind of way. When I go to touch the left side of my scrotum, I can only go so far before I pull away. I just don't like the sensation and am worried. I know that I will get used to this. I have a new appreciation for people who have lost limbs. I still know this is minor in comparison, but it is almost as if I have to re-learn how to be sexual with myself. I know I'll have to overcome this before I'll be comfortable having sex with Tyler again. This is becoming my obstacle/challenge to overcome in Kaballah terms. I guess. DJ says he is going to bring me some porn which will be good because once the actual incision heals I'm going to need to masturbate so I can get used to this new situation. Again, this could all sound trivial and maybe vanity, but it isn't. It is dealing with a change in my self-perceived sexuality. I'm not worried how I will look to other people, I just have to get used to this new scrotum sensation.
I woke up at 4am, turned on the coffee, and went right back to bed until 6:30am.
Worked for about 3-4 hours. Had Melissa come over so I could take a shower while having someone in the house. My, my isn't she the bossy one. Kept telling me to lay down and take it easy. Finally I did and of course fell asleep.
Got a call from the surgeon around 5pm. He was surprised I didn't have any swelling. Also said they found both types of testicular cancer, and that they were completely segregated from each other, which he has never seen before. I asked if I could get a book deal. The surgeon was very upbeat and felt like we caught things in time and this may be over. I have a CT scan next Wednesday to confirm. Fingers are crossed that it didn't spread and I won't have to go through treatment. Mom asked what are the two types of cancer. I don't know and don't want to know. I'm not going to give this more power than it already has, and with the high success rate, I'm going to let the medical professionals do their thing.
Bill and Heidi brought over a sensual cake. Had a penis on top with just one testicle. Very funny, but disturbing to both Tyler and me (the gay guys). Bill saw our expression and assured us that by eating the cake it wouldn't make us gay.
I made a comment to a few people that if you want to see how many friends you have, get cancer. The calls I've made and received have been numerous. Including emails. My “support” group is very large. Tyler's family, my family, our friends. All are pulling for me or praying for me. Melissa even has the Denver Seminary praying for me. Everyone wants me to take it easy, and I am trying as best as possible, but still have to work during this if clients are going to pay invoices. I started lying on the couch with my laptop as sitting in the office chair starts to get painful.
Saturday, April 25, 2009.
Starting to get a bit restless over the past couple of days. Still happy with the prognosis from the surgeon, but it has now shifted my thinking away from possible chemo/radiation to what has actually happened. I'm down to one percoset per day and that seems to be fine.
## Adult Section through end of post ##
The issue now is having one testicle in my scrotum. While looking in a mirror there isn't much difference, I am starting to come to terms with this new fact. I'm apprehensive to touch myself. My penis is fine and I still can get erections, but I am having a mentally hard time touching my scrotum. I'm forcing myself to however. I don't like how it feels. For many days I could still “feel” my left testicle. The pain that I have had was gone, but because I wasn't touching my scrotum, my brain still was registering two testicles. While I kept saying that this is nothing compared to a woman loosing a breast (and it still isn't), something else is going on. This isn't vanity. This is I've lost a part of my body that I was intimately aware of. And I mean intimately as in 40 years!. I can't “grab my balls” like I used to and it feels odd. My right testicle pulls the scrotum down in a more oblong kind of way. When I go to touch the left side of my scrotum, I can only go so far before I pull away. I just don't like the sensation and am worried. I know that I will get used to this. I have a new appreciation for people who have lost limbs. I still know this is minor in comparison, but it is almost as if I have to re-learn how to be sexual with myself. I know I'll have to overcome this before I'll be comfortable having sex with Tyler again. This is becoming my obstacle/challenge to overcome in Kaballah terms. I guess. DJ says he is going to bring me some porn which will be good because once the actual incision heals I'm going to need to masturbate so I can get used to this new situation. Again, this could all sound trivial and maybe vanity, but it isn't. It is dealing with a change in my self-perceived sexuality. I'm not worried how I will look to other people, I just have to get used to this new scrotum sensation.
Surgery and Day After
Monday, April 19th, 2009
Went to the urology center at 10:00am. Spoke to the surgeon and he has warmed up a bit. Said he wasn't planning on removing any lymph nodes. Surgery was delayed an hour. Tyler was sitting with me in pre-op but I told him I was dozing off and he could wait for Kelly in the waiting room. So glad Kelly sat with Tyler during the surgery. He is very nervous but putting up a “man-like” front about things.
Joked with the anesthesiologist. He put me under and I woke up I guess about an hour later. Very groggy. Got back to the house and Tyler went to get food and my Percoset prescription. Tyler indirectly yelled at me to quit getting up and moving around. I decided the general anesthesia and percoset were giving me false wellness and started letting Tyler do things. So laid on the couch with an ice pack on my groin.
Tuesday, April 20, 2009
Woke up several times during the night. At 1:30am when taking a pill, getting more ice, and going to the bathroom I decided to take a look. I was very nervous to see what my scrotum was going to look like. Finally stood in front of the mirror and ..... oh thank god! Doesn't look much different at all.
Woke up at 4am with everyone else and worked a little. By 6am had to go lay down on the couch and go to sleep. Dane came over around 9am to play Nurse Ratchet. She brought cookies, brownies, and ice cream. She was very helpful and went to pick up pizza for lunch. She stayed till about 4pm.
Got a call from the nurse at the urology center. She was surprised there hadn't been any swelling of the incision or my scrotum. The surgeon had told Tyler that my scrotum might swell and possibly turn black/blue. I guess staying off my feet and keeping ice in the area did well.
Allison came over to walk Toby. Tyler set it up so she would walk Toby during the week. Nice!
Kept taking the percoset roughly every 4 hours.
Went to the urology center at 10:00am. Spoke to the surgeon and he has warmed up a bit. Said he wasn't planning on removing any lymph nodes. Surgery was delayed an hour. Tyler was sitting with me in pre-op but I told him I was dozing off and he could wait for Kelly in the waiting room. So glad Kelly sat with Tyler during the surgery. He is very nervous but putting up a “man-like” front about things.
Joked with the anesthesiologist. He put me under and I woke up I guess about an hour later. Very groggy. Got back to the house and Tyler went to get food and my Percoset prescription. Tyler indirectly yelled at me to quit getting up and moving around. I decided the general anesthesia and percoset were giving me false wellness and started letting Tyler do things. So laid on the couch with an ice pack on my groin.
Tuesday, April 20, 2009
Woke up several times during the night. At 1:30am when taking a pill, getting more ice, and going to the bathroom I decided to take a look. I was very nervous to see what my scrotum was going to look like. Finally stood in front of the mirror and ..... oh thank god! Doesn't look much different at all.
Woke up at 4am with everyone else and worked a little. By 6am had to go lay down on the couch and go to sleep. Dane came over around 9am to play Nurse Ratchet. She brought cookies, brownies, and ice cream. She was very helpful and went to pick up pizza for lunch. She stayed till about 4pm.
Got a call from the nurse at the urology center. She was surprised there hadn't been any swelling of the incision or my scrotum. The surgeon had told Tyler that my scrotum might swell and possibly turn black/blue. I guess staying off my feet and keeping ice in the area did well.
Allison came over to walk Toby. Tyler set it up so she would walk Toby during the week. Nice!
Kept taking the percoset roughly every 4 hours.
The Days Before Surgery
Thursday, April 16th 2009
I'm getting frustrated with work because I can't get things done in time and need more money flowing in, and this cancer thing is wasting my time. I may not be learning my life lesson yet. My frustration got the best of me. I'm supposed to go to the Newberry office tomorrow which will take up my time again and it is supposed to be some huge snow tomorrow.
Friday, April 17th, 2009
Hmmm, guess the low shifted. Tyler and I woke up at 3:30am and no snow yet. Good. Hopefully I can make some progress on work stuff today.
Well, I was being impatient. The snow started coming down wet and sloppy. We got snow/rain through Saturday evening and it was a mess.
Saturday, April 18th, 2009
Tyler discovered a problem in the crawl space. It was filled with smelly water. Had Leroy from down the street take a look. The kitchen drain had apparently backed up, frozen, and split the pipe. It had been spewing kitchen drainage for a couple of months into the crawl space. Got the wet/dry vac and clean up as much as possible. Will have to finish cleaning after surgery.
Sunday, April 19th, 2009
Pulled the plastic covering from the crawl space to get the rest of the mess out. Will have to wait until I feel better from surgery to do final cleaning and installing of plastic.
I'm getting frustrated with work because I can't get things done in time and need more money flowing in, and this cancer thing is wasting my time. I may not be learning my life lesson yet. My frustration got the best of me. I'm supposed to go to the Newberry office tomorrow which will take up my time again and it is supposed to be some huge snow tomorrow.
Friday, April 17th, 2009
Hmmm, guess the low shifted. Tyler and I woke up at 3:30am and no snow yet. Good. Hopefully I can make some progress on work stuff today.
Well, I was being impatient. The snow started coming down wet and sloppy. We got snow/rain through Saturday evening and it was a mess.
Saturday, April 18th, 2009
Tyler discovered a problem in the crawl space. It was filled with smelly water. Had Leroy from down the street take a look. The kitchen drain had apparently backed up, frozen, and split the pipe. It had been spewing kitchen drainage for a couple of months into the crawl space. Got the wet/dry vac and clean up as much as possible. Will have to finish cleaning after surgery.
Sunday, April 19th, 2009
Pulled the plastic covering from the crawl space to get the rest of the mess out. Will have to wait until I feel better from surgery to do final cleaning and installing of plastic.
Surgical Appointment
April 15th, 2009 - Surgeon appointment.
My testicle doesn't really hurt much so I'm going to skip the appointment (ha, ha). Tyler and I are going to the appointment at 1pm today. Still nervous – having more and more anxious moments today. Still worried about everyone else at this point. Jeremy told me I'm going to have to “own this” and let people worry about me. If it is a really bad (or maybe even slightly bad) diagnosis, I am going to have to let people help.
Tyler has been great so far. I can see the concern in his eyes. He seems to be getting prepared also.
Everyone I know has asked to be called after this appointment for an update. Depending on the outcome I may not be able to update everyone today. Would have to set up a conference call.
Will call family first. Then Jeremy. Jeremy called last night to let me know I can call him any time, go out for coffee, or whatever I need. While everyone is concerned, I truly think Jeremy is going to be my greatest resource of knowledge and insight. I'll also get insight from Tyler's mom once things start going.
So, the appointment wasn't to bad. Surgery scheduled for Monday to remove my left testicle. Then wait to find out. Called a lot of people and said about the same things. Nurses were good to Tyler at the urology center. Mom keeps making me laugh with slip-up comments about being “disfigured” and “castration”. John said if my “boss” (who is me) wouldn't give me time off for the surgery/healing that to let him know and he would call him and tell him what an asshole he is. Okay.... brother makes a point. Dane said she is going to come over Tuesday with brownies/ice cream to stay with me so Tyler can go back to work. Although I know that I have a lot of people pulling for me, it is still amazing just how many.
My testicle doesn't really hurt much so I'm going to skip the appointment (ha, ha). Tyler and I are going to the appointment at 1pm today. Still nervous – having more and more anxious moments today. Still worried about everyone else at this point. Jeremy told me I'm going to have to “own this” and let people worry about me. If it is a really bad (or maybe even slightly bad) diagnosis, I am going to have to let people help.
Tyler has been great so far. I can see the concern in his eyes. He seems to be getting prepared also.
Everyone I know has asked to be called after this appointment for an update. Depending on the outcome I may not be able to update everyone today. Would have to set up a conference call.
Will call family first. Then Jeremy. Jeremy called last night to let me know I can call him any time, go out for coffee, or whatever I need. While everyone is concerned, I truly think Jeremy is going to be my greatest resource of knowledge and insight. I'll also get insight from Tyler's mom once things start going.
So, the appointment wasn't to bad. Surgery scheduled for Monday to remove my left testicle. Then wait to find out. Called a lot of people and said about the same things. Nurses were good to Tyler at the urology center. Mom keeps making me laugh with slip-up comments about being “disfigured” and “castration”. John said if my “boss” (who is me) wouldn't give me time off for the surgery/healing that to let him know and he would call him and tell him what an asshole he is. Okay.... brother makes a point. Dane said she is going to come over Tuesday with brownies/ice cream to stay with me so Tyler can go back to work. Although I know that I have a lot of people pulling for me, it is still amazing just how many.
The Beginning
For the past couple of years I had these on again, off again pain in my groin. Kind of like a dull racking pain. Since it came and went, and since during one of those times I had a doctor check (in which he didn't find any lumps), I kind of figured it was scar-tissue from a vasectomy I had 14 years ago, or Toby (my dog) jumped in my lap and landed squarely on my left testicle. And since my birthday I've been joking about turning 40 and all the aches and pains.
About Feburary/March 2009 the pain was becoming more constant and more noticeable. Finally April 8th I went to see a physician assistant at my doctors office. Once he felt the lump, he immediately set up an ultrasound for the next morning.
I had the ultrasound on April 9th at 7:30am. By 10:00 am the doctors office called wanting me to come in today at 12:15pm. Oh shit! Here it comes.
The physician assistant, visibly shaken, discusses lump and that it looks like cancer. Sets up appointment with a surgeon at The Urology Center of Colorado (by Mile Hi/Invesco Stadium) on April 15th. The PA asked if I was still with Tyler (my partner) since I will need a support system. Told him I would be fine, would joke about it, and would have my “moments”. Left the office and called Tyler. Started to cry when telling Tyler that I needed to talk to him. I don't know if I was more upset about the possibility of cancer or how much this was going to cost.
Met Tyler at his office and he was immediately kind/sweet/caring/concerned. Left his office to go home and called Mom while on the way. Told her not to freak. She said we had a bargain (her children are not allowed to die before her). I told her we might have to move up her time table as a joke.
Have told most everyone what is going on.
Talked with Jeremy at lunch on Saturday. He was (and will be) extremely helpful. My fear up to this point is the unknown. What kind of fight am I about to engage in? How will it affect me physically/mentally? Will I be able to work? Will I be able to go to the IUG Conference? Memphis in June? Idaho and Chicago in July?
Jeremy explained what he went through with lymphoma and skin cancer, chemo and radiation. Said treatment days would be exhausting but he built an outdoor deck while he was going through it. At the same time, Jeremy started to tear up a couple of times. This gave me the indication that while I will be fine and can fight this, it will be emotionally tough for me and people around me.
Finally did some brief internet research. Figured I need to be prepared for removal of the testicle. Now the immediate question is whether to live with just one testicle or get an implant. I think I would be okay without it if I knew what my scrotum would look like. Wasn't able to find any photos on the web to get an idea. Also seems like most of the postings on the web of guys who opted not to have the implant are straight/married and let pubic hair hide the missing testicle. I'm pretty sure I'm going to want the implant.
I'm decently focused on work. There is a sense of urgency to get things done before this fight begins. I'm making my jokes about the situation, but in my quiet moments am anxious/nervous/scared. I feel fine and am not having thoughts of dying, but I still have moments where I'm scared of what I'm about to go through.
I feel my best case scenario is that the lump is not cancerous and that surgery will be performed to remove the lump/cyst.
The worst case scenario is that it is cancer and it has started spreading. From talking to Jeremy I know I'll be able to handle the chemo/radiation if it comes to that. I'm just still in a “scheduling” mode with this. But I'm trying to prepare myself for what may happen. To be honest I think I'm doing okay with that, but maybe not. Deep breath and the next step is the urology appointment.
I looked up The Urology Center of Colorado, which is where the surgery will take place.. Wow! Nice center and close to the house. If I have to do a lot with this situation, I can do it all there.
Everyone is telling me how I'll make it through this and that Lance Armstrong and others have said how positive it was for their lives. A challenge. I guess coming out wasn't enough of a challenge. My coming out was a massively positive thing for me. Good god what am I going to learn from this?
About Feburary/March 2009 the pain was becoming more constant and more noticeable. Finally April 8th I went to see a physician assistant at my doctors office. Once he felt the lump, he immediately set up an ultrasound for the next morning.
I had the ultrasound on April 9th at 7:30am. By 10:00 am the doctors office called wanting me to come in today at 12:15pm. Oh shit! Here it comes.
The physician assistant, visibly shaken, discusses lump and that it looks like cancer. Sets up appointment with a surgeon at The Urology Center of Colorado (by Mile Hi/Invesco Stadium) on April 15th. The PA asked if I was still with Tyler (my partner) since I will need a support system. Told him I would be fine, would joke about it, and would have my “moments”. Left the office and called Tyler. Started to cry when telling Tyler that I needed to talk to him. I don't know if I was more upset about the possibility of cancer or how much this was going to cost.
Met Tyler at his office and he was immediately kind/sweet/caring/concerned. Left his office to go home and called Mom while on the way. Told her not to freak. She said we had a bargain (her children are not allowed to die before her). I told her we might have to move up her time table as a joke.
Have told most everyone what is going on.
Talked with Jeremy at lunch on Saturday. He was (and will be) extremely helpful. My fear up to this point is the unknown. What kind of fight am I about to engage in? How will it affect me physically/mentally? Will I be able to work? Will I be able to go to the IUG Conference? Memphis in June? Idaho and Chicago in July?
Jeremy explained what he went through with lymphoma and skin cancer, chemo and radiation. Said treatment days would be exhausting but he built an outdoor deck while he was going through it. At the same time, Jeremy started to tear up a couple of times. This gave me the indication that while I will be fine and can fight this, it will be emotionally tough for me and people around me.
Finally did some brief internet research. Figured I need to be prepared for removal of the testicle. Now the immediate question is whether to live with just one testicle or get an implant. I think I would be okay without it if I knew what my scrotum would look like. Wasn't able to find any photos on the web to get an idea. Also seems like most of the postings on the web of guys who opted not to have the implant are straight/married and let pubic hair hide the missing testicle. I'm pretty sure I'm going to want the implant.
I'm decently focused on work. There is a sense of urgency to get things done before this fight begins. I'm making my jokes about the situation, but in my quiet moments am anxious/nervous/scared. I feel fine and am not having thoughts of dying, but I still have moments where I'm scared of what I'm about to go through.
I feel my best case scenario is that the lump is not cancerous and that surgery will be performed to remove the lump/cyst.
The worst case scenario is that it is cancer and it has started spreading. From talking to Jeremy I know I'll be able to handle the chemo/radiation if it comes to that. I'm just still in a “scheduling” mode with this. But I'm trying to prepare myself for what may happen. To be honest I think I'm doing okay with that, but maybe not. Deep breath and the next step is the urology appointment.
I looked up The Urology Center of Colorado, which is where the surgery will take place.. Wow! Nice center and close to the house. If I have to do a lot with this situation, I can do it all there.
Everyone is telling me how I'll make it through this and that Lance Armstrong and others have said how positive it was for their lives. A challenge. I guess coming out wasn't enough of a challenge. My coming out was a massively positive thing for me. Good god what am I going to learn from this?
Welcome
Welcome to my blog about my fight with testicular cancer.
This blog serves about three purposes.
This blog should probably be rated at a PG-13. Some of the information will be pretty frank and specific to male functions. I'm not sure how I'm going to "warn" of those sections, because, well, I have cancer. I get a break! :-)
I have a very positive attitude about this fight. I'm Stage III A, non-seminoa but still in the Good Risk category. I have already had my Left Radical Orchiectomy (left testicle removal) and have just started chemo. My chemo treatments are Monday - Friday (3-6 hours), 2 weeks off, then repeat 3 more times. I'll be done with chemo in July 2009 at which point I will have beaten back the cancer and will be "cured". Oh sure, the surgeon still wants to talk about surgery options, but as you will read later in the blog, I'm not inclined to take that option and its "quality of life" risk.
Robert
This blog serves about three purposes.
- The first purpose is to have a place where friends and family can see updates on my progress with testicular cancer.
- The second purpose is a place where other guys with testicular cancer can get some non-medical, "what the hell is this going to be like" information. Information more on the journey than the science.
- The third purpose will be for me to use this as a journal of this latest life challenge. So the blog may have a journal feel to it.
This blog should probably be rated at a PG-13. Some of the information will be pretty frank and specific to male functions. I'm not sure how I'm going to "warn" of those sections, because, well, I have cancer. I get a break! :-)
I have a very positive attitude about this fight. I'm Stage III A, non-seminoa but still in the Good Risk category. I have already had my Left Radical Orchiectomy (left testicle removal) and have just started chemo. My chemo treatments are Monday - Friday (3-6 hours), 2 weeks off, then repeat 3 more times. I'll be done with chemo in July 2009 at which point I will have beaten back the cancer and will be "cured". Oh sure, the surgeon still wants to talk about surgery options, but as you will read later in the blog, I'm not inclined to take that option and its "quality of life" risk.
Robert
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