playing catchup
Well, as I said in my last post, my attention span has been suffering due to chemo, side effects and other things. But I'm going to try to post more now.
For those who haven't heard, I've been cancer free for 3 months now.
So let's recap the time line:
April 2009 - Primary care Dr. finally recognizes that I have lumps in my scrotum after two years of telling him about them. Ultrasound confirms I have something there. Both Oncologist and Urologist say it must come out. Right Interlingual Oriechtomy is performed towards the end of the month. Biopsy shows that it is a Seminoma tumor. CT shows that I have only one lymph-node involved, but it is 3 cm as opposed to the normal less than 10 mm. Due to the size I flip over to stage IIc. Chemotherapy is recommended. I'll be undergoing 4 rounds of BEP (Bleomycine, Etoposide, and cisPlatin) (http://www.cancernet.co.uk/chem-bep.htm) over the next 12 weeks.
May 2009 - start the month by getting a port-a-cath put in my chest, so they won't have to burn the veins in my arms with the chemo. The this point my life is based on chemo rounds rather the the calendar, so I'm going to shift gears. A "round" from me is 21 days. first 5 are in the Hospital receiving Etoposide and Cisplatin everyday. Then I receive Bleomycin once evey week on an outpatient basis.
Round 1 (May - June 2009) -- Due to start Monday May 19th. Oncologist has taken long weekend and didn't leave orders so it can't. I freak out but Zada is a rock. I'm ready to kill hhim. This is supposed to be the only inpatient round, but they changed their mind so I spent four of the next 12 weeks in the hospital. Once this round was started, it went fairly well.
Worst moment was the first time they plugged in the various chemo agents. Something about the nurses coming in and dressing up in their hazmat gear to plug a drug into my body really bothers me. I'm also on a couple of steroids to ward off nausea, although if they really wanted to do that, I would expect them to improve the food. Port-a-cath began acting up to point that the last done of bleomycin for this round got administered through a "standard" IV.
Other news is that I quit smoking (didn't want to be one of those people who dragged my IV pole outside for a cigarette) and I've managed to keep up with both school and work. Between this round and the next I go to K'tai. Was re-elected Khan (thanks Bros) and discovered that alcohol also tasted horrible, so spent the weekend drinking cranberry juice. I have now lost my two major vices to the cancer and am not happy. Did give people the chance to snatch the Khan bald. Only had one person take me up on it.
Right before I left my white count plummeted so they put me on a round of neupogen. Side effect of causing long bone pain. That was an understatement, have never felt that much pain. Spent K'tai taking T3s and Vicodin, so I guess not drinking was a good thing.
Round 2 (June - July 2009) -- OH joy, they can't get a blood return out of the port-a-cath, so they've called the surgeon and I'm scheduled for a revision to fix it. I wake up and discover that they couldn't do that so they replaced it. I now have two scars on my chest. My hair has started thinning and my sense of taste is really wacked out. Tried a cigarette and it tasted so foul I decided to not restart smoking.
Still managed to keep up with work and school, although I've been told that I don't have to teleconference in for class if I don't want to. Since school keeps my mind off the chemo, I continue to as much as possible. Many thanks to my fellow students and the teachers for letting me do this. I understand that the IV alarm was quite distracting on the other end.
At the end of this round my hair had thinned to the point I went ahead and got my head shaved. Between that and the anti-nausea steroids I looked like Mr. Clean with a gland problem.
Had another round of Neupogen, thankfully with no side-effects. Also found out that the stuff runs $5000/cycle. that is $1000 for 180 units. or one shot. Thank goodness for my insurance, I only paid $60 for two cycles. Since I was on the road, I also got to give myself shots again. I really hate that, but I think my roommate at Annual Conference hated it more.
All my ALA friends, aquaintances, and even people I didn't know were very supportive. Wish I had felt better, we were in Chicago and I love that town. Did get to see Kharmin. Also accepted appointments as Chair of the American Libraries Advisory Committee, Chair ot the ALA-APA Publications committee and to the Committee on Committees (yes that's right). Maybe too much but they asked and my self-control seems to be slipping. It is also an investment in the future that the cancer can't kill off, at least I hope so.
Round 3 (July 2009) -- Started late as I was out of town at ALA. I think a blessing as it got me back to the planned Monday - Friday instead of the Wednesday - Sunday that had developed. I hate being in hospital on the weekend. This round went without a hitch, although I"m really beginning to feel the general effects of the chemo.
This is also the round where I hit my nadir emotionally. I spent one night not sleeping and was not pleasant the next day. Had the social worker and a counselor in the room within about 1/2 an hour. "We understand you are a little agitated Mr. Sandstrom, what's wrong?" Talk about an opening. I let them have it with both barrels and finished up with, "thank you for letting me rant. If I can get some sleep I'll be fine." That night was offered a sleeping pill, which they wouldn't give me the night before, but didn't need it. was ready to sleep after being awake for pretty much 40 hours.
Stayed in town after this round as I was making plans for Pennsic. Continued with School and work. Started this with over 600 hours of sick time and I finished with over 300 left. I'm happy.
Round 4 (July - August 2009) -- Final round! It looks like I've made it, even the chemo is cumulative and this is the one that is really hurting. I tried to talk the Dr. out of it as both Indiana University and Sloan Kettering (two largest Testicular Cancer research centers in US) use protocols calling for just 3 rounds of BEP but he wouldn't go for it.
Spent several days setting up to get last chemo dose (bleomycin) in Butler, PA during Pennsic. Doctor finally nixes the trip. Why he couldn't have done it earlier I don't know but he did.
Turns out is was a good thing as my bone marrow shut down and I developed sever anemia. Normal Red Blood Cell Count is over 13, you get a transfusion if you fall below 9 and I was at 1. No wonder I could barely function. My Mother was also down during the 2nd week of this round and almost didn't leave. I had started shuffling and was actually using the handicapped placard I had. I couldn't walk the 5 blocks from where I park to where I work. So with my last dose of chemo, I also got two units of whole blood. That didn't get me up to normal, but it got me over 9. Still kept up with school and work.
Post Chemo -- Blood tests after chemo showed the tumor markers for a different kind on Testicular Cancer were elevated. Had to go through more testing. Finally in October they cleared me of that.
Developed pitting edema of both legs which started a whole nother round of Dr. visits. In January everything was cleared and they decided it was caused by my weight, so I'm working on that again after 12 weeks of being told not to lose any.
Developed Peripheral Neuropathy in October in both hands and feet. As of now my hands are getting better, but my feet are still feeling iffy. But the Drs have warned my that it can take years for side-effects to wear off.
Am also still suffering from chemo brain. My attention span is still not what it used to be and my short term memory is dicey. Now more than ever if it isn't in writing, it doesn't count.
I have finished all the course work for my Master's in Public Administration with a 4.0 GPA and am trying to get the final project done. I need to find a proof reader as I can't do that right now. It calls for too much concentration and attention to detail that I just can't seem to muster.
My hair is growing back. When I started losing it I joked that I wanted it to come back further down on my forehead, curly and auburn. What I got was what I lost, although it does look like my bald spot has filled in. Everyone it telling me it is darker, but that is more a function of the fact I have been lightening it for several years.
Between the stopping smoking, steroids, and movement issues I have gained about 20 pounds. The Drs are griping about it now, so I know I'm better. I'm working on that now.
I got the port-a-cath out, which was really no big deal. They were going to do it under a local anesthetic, but decided I was too twitchy so gave me a general.
I'm now back on the job market, although that does include a possible promotion here in El Paso. My finances are in a shambles, but you know....I've beat cancer, I can beat anything.
Thanks to everyone who has given me so much support over the past 9 months. I'll try to do better keeping everyone up to date.
John/Omar
For those who haven't heard, I've been cancer free for 3 months now.
So let's recap the time line:
April 2009 - Primary care Dr. finally recognizes that I have lumps in my scrotum after two years of telling him about them. Ultrasound confirms I have something there. Both Oncologist and Urologist say it must come out. Right Interlingual Oriechtomy is performed towards the end of the month. Biopsy shows that it is a Seminoma tumor. CT shows that I have only one lymph-node involved, but it is 3 cm as opposed to the normal less than 10 mm. Due to the size I flip over to stage IIc. Chemotherapy is recommended. I'll be undergoing 4 rounds of BEP (Bleomycine, Etoposide, and cisPlatin) (http://www.cancernet.co.uk/chem-bep.htm) over the next 12 weeks.
May 2009 - start the month by getting a port-a-cath put in my chest, so they won't have to burn the veins in my arms with the chemo. The this point my life is based on chemo rounds rather the the calendar, so I'm going to shift gears. A "round" from me is 21 days. first 5 are in the Hospital receiving Etoposide and Cisplatin everyday. Then I receive Bleomycin once evey week on an outpatient basis.
Round 1 (May - June 2009) -- Due to start Monday May 19th. Oncologist has taken long weekend and didn't leave orders so it can't. I freak out but Zada is a rock. I'm ready to kill hhim. This is supposed to be the only inpatient round, but they changed their mind so I spent four of the next 12 weeks in the hospital. Once this round was started, it went fairly well.
Worst moment was the first time they plugged in the various chemo agents. Something about the nurses coming in and dressing up in their hazmat gear to plug a drug into my body really bothers me. I'm also on a couple of steroids to ward off nausea, although if they really wanted to do that, I would expect them to improve the food. Port-a-cath began acting up to point that the last done of bleomycin for this round got administered through a "standard" IV.
Other news is that I quit smoking (didn't want to be one of those people who dragged my IV pole outside for a cigarette) and I've managed to keep up with both school and work. Between this round and the next I go to K'tai. Was re-elected Khan (thanks Bros) and discovered that alcohol also tasted horrible, so spent the weekend drinking cranberry juice. I have now lost my two major vices to the cancer and am not happy. Did give people the chance to snatch the Khan bald. Only had one person take me up on it.
Right before I left my white count plummeted so they put me on a round of neupogen. Side effect of causing long bone pain. That was an understatement, have never felt that much pain. Spent K'tai taking T3s and Vicodin, so I guess not drinking was a good thing.
Round 2 (June - July 2009) -- OH joy, they can't get a blood return out of the port-a-cath, so they've called the surgeon and I'm scheduled for a revision to fix it. I wake up and discover that they couldn't do that so they replaced it. I now have two scars on my chest. My hair has started thinning and my sense of taste is really wacked out. Tried a cigarette and it tasted so foul I decided to not restart smoking.
Still managed to keep up with work and school, although I've been told that I don't have to teleconference in for class if I don't want to. Since school keeps my mind off the chemo, I continue to as much as possible. Many thanks to my fellow students and the teachers for letting me do this. I understand that the IV alarm was quite distracting on the other end.
At the end of this round my hair had thinned to the point I went ahead and got my head shaved. Between that and the anti-nausea steroids I looked like Mr. Clean with a gland problem.
Had another round of Neupogen, thankfully with no side-effects. Also found out that the stuff runs $5000/cycle. that is $1000 for 180 units. or one shot. Thank goodness for my insurance, I only paid $60 for two cycles. Since I was on the road, I also got to give myself shots again. I really hate that, but I think my roommate at Annual Conference hated it more.
All my ALA friends, aquaintances, and even people I didn't know were very supportive. Wish I had felt better, we were in Chicago and I love that town. Did get to see Kharmin. Also accepted appointments as Chair of the American Libraries Advisory Committee, Chair ot the ALA-APA Publications committee and to the Committee on Committees (yes that's right). Maybe too much but they asked and my self-control seems to be slipping. It is also an investment in the future that the cancer can't kill off, at least I hope so.
Round 3 (July 2009) -- Started late as I was out of town at ALA. I think a blessing as it got me back to the planned Monday - Friday instead of the Wednesday - Sunday that had developed. I hate being in hospital on the weekend. This round went without a hitch, although I"m really beginning to feel the general effects of the chemo.
This is also the round where I hit my nadir emotionally. I spent one night not sleeping and was not pleasant the next day. Had the social worker and a counselor in the room within about 1/2 an hour. "We understand you are a little agitated Mr. Sandstrom, what's wrong?" Talk about an opening. I let them have it with both barrels and finished up with, "thank you for letting me rant. If I can get some sleep I'll be fine." That night was offered a sleeping pill, which they wouldn't give me the night before, but didn't need it. was ready to sleep after being awake for pretty much 40 hours.
Stayed in town after this round as I was making plans for Pennsic. Continued with School and work. Started this with over 600 hours of sick time and I finished with over 300 left. I'm happy.
Round 4 (July - August 2009) -- Final round! It looks like I've made it, even the chemo is cumulative and this is the one that is really hurting. I tried to talk the Dr. out of it as both Indiana University and Sloan Kettering (two largest Testicular Cancer research centers in US) use protocols calling for just 3 rounds of BEP but he wouldn't go for it.
Spent several days setting up to get last chemo dose (bleomycin) in Butler, PA during Pennsic. Doctor finally nixes the trip. Why he couldn't have done it earlier I don't know but he did.
Turns out is was a good thing as my bone marrow shut down and I developed sever anemia. Normal Red Blood Cell Count is over 13, you get a transfusion if you fall below 9 and I was at 1. No wonder I could barely function. My Mother was also down during the 2nd week of this round and almost didn't leave. I had started shuffling and was actually using the handicapped placard I had. I couldn't walk the 5 blocks from where I park to where I work. So with my last dose of chemo, I also got two units of whole blood. That didn't get me up to normal, but it got me over 9. Still kept up with school and work.
Post Chemo -- Blood tests after chemo showed the tumor markers for a different kind on Testicular Cancer were elevated. Had to go through more testing. Finally in October they cleared me of that.
Developed pitting edema of both legs which started a whole nother round of Dr. visits. In January everything was cleared and they decided it was caused by my weight, so I'm working on that again after 12 weeks of being told not to lose any.
Developed Peripheral Neuropathy in October in both hands and feet. As of now my hands are getting better, but my feet are still feeling iffy. But the Drs have warned my that it can take years for side-effects to wear off.
Am also still suffering from chemo brain. My attention span is still not what it used to be and my short term memory is dicey. Now more than ever if it isn't in writing, it doesn't count.
I have finished all the course work for my Master's in Public Administration with a 4.0 GPA and am trying to get the final project done. I need to find a proof reader as I can't do that right now. It calls for too much concentration and attention to detail that I just can't seem to muster.
My hair is growing back. When I started losing it I joked that I wanted it to come back further down on my forehead, curly and auburn. What I got was what I lost, although it does look like my bald spot has filled in. Everyone it telling me it is darker, but that is more a function of the fact I have been lightening it for several years.
Between the stopping smoking, steroids, and movement issues I have gained about 20 pounds. The Drs are griping about it now, so I know I'm better. I'm working on that now.
I got the port-a-cath out, which was really no big deal. They were going to do it under a local anesthetic, but decided I was too twitchy so gave me a general.
I'm now back on the job market, although that does include a possible promotion here in El Paso. My finances are in a shambles, but you know....I've beat cancer, I can beat anything.
Thanks to everyone who has given me so much support over the past 9 months. I'll try to do better keeping everyone up to date.
John/Omar