Fifth Day After Chemo Report 7.31.2010
Woke up about 8, watched Comcast Sports Rise. Went back to sleep til about 10! I never do that.
No Prednisone today.
Ran to the IL SOS facility for my license plate sticker. Picked up a few things for Julie at WalMart. Came home and fixed a bathroom drain that was clogged.
And, that was about it. I didn't have much energy. Was planning to go for a bike ride but just didn't feel like exerting myself too much.
Hopefully tomorrow will be better. No complaints, it wasn't painful or miserable or anything. Just feel a little disconnected and tired.
Have had a little stomach discomfort, but not enough to even want to take the meds.
BO-RING!
Saturday, July 31, 2010
Friday, July 30, 2010
Fourth Day After Chemo Report 7.30.2010
Fourth Day After Chemo Report 7.30.2010
Honestly, nothing new today. Felt fine. Not perfect, but OK.
Maybe I should make something up. It would be more interesting.
Honestly, nothing new today. Felt fine. Not perfect, but OK.
Maybe I should make something up. It would be more interesting.
Thursday, July 29, 2010
Third Day After Chemo PM Report 7.29.2010
Third Day After Chemo PM Report 7.29.2010
Had the hiccups today, but they never lasted very long. Some earlier this morning were pretty painful. Other than that, my chubby cheeks and some weight gain (yeah, in 3 days!) there was nothing remarkable.
Tomorrow is the last day on Prednisone until the next chemo treatment. Anxious / nervous to see what changes.
***
I have an old friend, Bill, that I don't see very often any more. I hadn't seen him since way before I was diagnosed. I had been feeling guilty that I hadn't called him up and gone out for a beer with him to give him the lowdown on my situation. I just couldn't figure out a graceful way to tell him.
Seems to be a recurring theme here lately, lost connections. Bill and I were close friends for years, but in the last several years we've seen each other less and less. No one's fault really, just the same old reasons - living our own lives, in different towns, raising our own families, work.
I guess with certain friends like Bill, it feels like even though you might not see them for quite a while, when you do get back together, you feel like you still know who they are and what they're all about... and they feel the same way about you.
Late this afternoon, I called Bill and told him my story. I felt bad to dump it on him on the phone. I really should have gotten together with him earlier, in person. I do feel better now that I have finally plugged him into it. My fear was that Bill would maybe run into someone who would tell him about me and that wouldn't have been a very nice way for a dear old friend to learn about my situation.
Bill reacted as I would have guessed, with shock and compassion. We had a good talk. He offered his support. He commented how quickly time has passed (we met in 1979).
There was a time when we did everything together, work, skiing, and, I must admit, some legendary partying. Bill was in my wedding and I was in his. How did we lose track of each other?
I tried to make the message as upbeat as possible - my prognosis is good, beating this is doable and expected, I am in good spirits, etc. And, really, that's how I do feel about this....but, for two middle aged guys whose best and most indelible shared memories are from when we were invincible young men, it was a real watershed event to contemplate my mortality.
I wonder if somewhere inside I knew how uncomfortable that very moment would be and that's why I put off telling him.
A few short weeks ago my life kind of passed before my eyes when I heard the word "lymphoma" in a doctor's office. Since then I have had many chances to reflect on things, both good and bad, that have happened in my life.
Falling out of touch with friends like Bill is among the things I regret.
Had the hiccups today, but they never lasted very long. Some earlier this morning were pretty painful. Other than that, my chubby cheeks and some weight gain (yeah, in 3 days!) there was nothing remarkable.
Tomorrow is the last day on Prednisone until the next chemo treatment. Anxious / nervous to see what changes.
***
I have an old friend, Bill, that I don't see very often any more. I hadn't seen him since way before I was diagnosed. I had been feeling guilty that I hadn't called him up and gone out for a beer with him to give him the lowdown on my situation. I just couldn't figure out a graceful way to tell him.
Seems to be a recurring theme here lately, lost connections. Bill and I were close friends for years, but in the last several years we've seen each other less and less. No one's fault really, just the same old reasons - living our own lives, in different towns, raising our own families, work.
I guess with certain friends like Bill, it feels like even though you might not see them for quite a while, when you do get back together, you feel like you still know who they are and what they're all about... and they feel the same way about you.
Late this afternoon, I called Bill and told him my story. I felt bad to dump it on him on the phone. I really should have gotten together with him earlier, in person. I do feel better now that I have finally plugged him into it. My fear was that Bill would maybe run into someone who would tell him about me and that wouldn't have been a very nice way for a dear old friend to learn about my situation.
Bill reacted as I would have guessed, with shock and compassion. We had a good talk. He offered his support. He commented how quickly time has passed (we met in 1979).
There was a time when we did everything together, work, skiing, and, I must admit, some legendary partying. Bill was in my wedding and I was in his. How did we lose track of each other?
I tried to make the message as upbeat as possible - my prognosis is good, beating this is doable and expected, I am in good spirits, etc. And, really, that's how I do feel about this....but, for two middle aged guys whose best and most indelible shared memories are from when we were invincible young men, it was a real watershed event to contemplate my mortality.
I wonder if somewhere inside I knew how uncomfortable that very moment would be and that's why I put off telling him.
A few short weeks ago my life kind of passed before my eyes when I heard the word "lymphoma" in a doctor's office. Since then I have had many chances to reflect on things, both good and bad, that have happened in my life.
Falling out of touch with friends like Bill is among the things I regret.
Cheeks are puffy from steroids 07-29-2010
Cheeks are puffy from steroids 07-29-2010
A.M.
That's right. Cheeks all puffy (from Prednisone?).
Hiccups are intermittent, but now when I do hiccup, my sternum or xyphoid area, or whatever kinda hurts.
Your friend,
Chemo-sabe
A.M.
That's right. Cheeks all puffy (from Prednisone?).
Hiccups are intermittent, but now when I do hiccup, my sternum or xyphoid area, or whatever kinda hurts.
Your friend,
Chemo-sabe
Wednesday, July 28, 2010
2nd Day After Chemo 07-28-2010
2nd Day After Chemo 07-28-2010
Let me sum it up in one word: hiccups.
Julie said she heard me hiccuping last night... in bed, long after I had gone to sleep. I don't remember it but she said I answered when she called my name.
Then I had 'em off and on all day today. Just got 'em back again. On some websites it says that the Prednisone AND the Cyclophosphamide (got that in Chemo) can cause them.
Other side effects: On the take home list they gave me after Chemo, it shows what over the counter medication I should stock, and for what:
Yeah, you could have constipation or you could have diarrhea... hopefully you wind up in the middle, but BE PREPARED! Could go either way, or maybe both.
I also saw that th
ere was another scrip I could get to cure the hiccups, but honestly, I don't want another one. Right now I've got four that I'm trying to keep straight. I'd rather take more than less. If the hicks get totally out of hand, I might have to reconsider.
Other than that, I've had a little bit of a floating feeling and have had a little difficulty staying on task as I seem a little jittery. Nothing I can't handle.
I'm not getting any more / less sleep than usual, but once I'm off Prednisone, we'll see.
I noticed that I take the Prednisone on Chemo day + 4 more days. The doctor said I wouldn't likely get sick after Chemo for 5 days..... hmm. I know you don't ideally take Prednisone (probably especially a high dose like I'm guessing this is) for too long. Maybe there's only so long they can hold the nausea off before they have to drop the 'roids.
***
ANOTHER SUBJECT
---------This part is out of sequence. I should have posted this before, but I didn't have any time to do a post between the family reunion and my first Chemo.---------
On a totally unrelated subject, we had my side's family reunion at our house this past Saturday. It was great to get together with brothers/sisters/mom/nieces/nephews, etc. We had a great time reconnecting and I'm sure you can imagine that this year, for me, felt a lot different than last year.
I took some time away to go for a quick bike ride with my nephew, Michael. We zipped out to and through Silver Springs State Park. Took about an hour. It was great for me to have someone to ride with and Michael's got the biking bug too. He has a mountain bike but he really liked my road bike.
In addition to my newer road bike, I had an old Schwinn Traveler (a road
bike) that I had since Julie and I were dating (1983-ish). It's in good shape, very ride-able, and pretty fast (these are cycle geek's concerns). I had plans for it but they never came to anything. I decided to give it to Michael. He seemed pretty happy to get it and that made me feel good. I really loved that bike but better to give it to someone who would appreciate and ride it rather than keeping and neglecting it.
The reunion was a chance to get caught up with the whole clan. They're a great bunch of people. Unfortunately, since the last family reunion about a year ago, we've all been mostly out of touch. Shame on all of us. I'm just as guilty as anyone. Daily life and distance conspire to rob us of our connections to the past AND to the future. And it's our loss.
Boy, did I ever cherish the time with these folks that I love.
So, what I'm trying to say is that the family reunion was a very life affirming event for me. It had a feel of shared past experiences, making new memories, passing things to a (terrific) new generation, the circle of life, all that.
Yeah, that's corny. Sue me:)
Let me sum it up in one word: hiccups.
Julie said she heard me hiccuping last night... in bed, long after I had gone to sleep. I don't remember it but she said I answered when she called my name.
Then I had 'em off and on all day today. Just got 'em back again. On some websites it says that the Prednisone AND the Cyclophosphamide (got that in Chemo) can cause them.
Other side effects: On the take home list they gave me after Chemo, it shows what over the counter medication I should stock, and for what:
Yeah, you could have constipation or you could have diarrhea... hopefully you wind up in the middle, but BE PREPARED! Could go either way, or maybe both.
I also saw that th
ere was another scrip I could get to cure the hiccups, but honestly, I don't want another one. Right now I've got four that I'm trying to keep straight. I'd rather take more than less. If the hicks get totally out of hand, I might have to reconsider.Other than that, I've had a little bit of a floating feeling and have had a little difficulty staying on task as I seem a little jittery. Nothing I can't handle.
I'm not getting any more / less sleep than usual, but once I'm off Prednisone, we'll see.
I noticed that I take the Prednisone on Chemo day + 4 more days. The doctor said I wouldn't likely get sick after Chemo for 5 days..... hmm. I know you don't ideally take Prednisone (probably especially a high dose like I'm guessing this is) for too long. Maybe there's only so long they can hold the nausea off before they have to drop the 'roids.
***
ANOTHER SUBJECT
---------This part is out of sequence. I should have posted this before, but I didn't have any time to do a post between the family reunion and my first Chemo.---------
On a totally unrelated subject, we had my side's family reunion at our house this past Saturday. It was great to get together with brothers/sisters/mom/nieces/nephews, etc. We had a great time reconnecting and I'm sure you can imagine that this year, for me, felt a lot different than last year.
I took some time away to go for a quick bike ride with my nephew, Michael. We zipped out to and through Silver Springs State Park. Took about an hour. It was great for me to have someone to ride with and Michael's got the biking bug too. He has a mountain bike but he really liked my road bike.
In addition to my newer road bike, I had an old Schwinn Traveler (a road
bike) that I had since Julie and I were dating (1983-ish). It's in good shape, very ride-able, and pretty fast (these are cycle geek's concerns). I had plans for it but they never came to anything. I decided to give it to Michael. He seemed pretty happy to get it and that made me feel good. I really loved that bike but better to give it to someone who would appreciate and ride it rather than keeping and neglecting it.The reunion was a chance to get caught up with the whole clan. They're a great bunch of people. Unfortunately, since the last family reunion about a year ago, we've all been mostly out of touch. Shame on all of us. I'm just as guilty as anyone. Daily life and distance conspire to rob us of our connections to the past AND to the future. And it's our loss.
Boy, did I ever cherish the time with these folks that I love.
So, what I'm trying to say is that the family reunion was a very life affirming event for me. It had a feel of shared past experiences, making new memories, passing things to a (terrific) new generation, the circle of life, all that.
Yeah, that's corny. Sue me:)
Shrinkage Factor, Confirmed - 07-28-2010
At work this morning, Sherri confirmed that the node on the back of my neck is smaller.
Let's hope the chemo meds don't give the Prednisone (steroid) any ideas with regards to shrinkage, eh?
Let's hope the chemo meds don't give the Prednisone (steroid) any ideas with regards to shrinkage, eh?
Tuesday, July 27, 2010
The Shrinkage Factor? 07-27-2010
The Shrinkage Factor? 07-27-2010
Your intrepid reporter hesitates to even post this because you'll probably think I'm crazy. But friend, I don't think I should hide this from you. I trust you to give me the benefit of the doubt, so I'm going to plunge ahead.
Shortly after I was diagnosed, I noticed that the right side of my neck had become tender. I knew the doctor said I had enlarged lymph nodes there and could actually see that the area was somewhat "swollen". I wouldn't say that it was sore, but the area was slightly but unmistakably tender to the touch. The tenderness did not go away.
Late yesterday afternoon, probably about 7 or 8 hours after my chemo had begun (not finished, but begun) I felt the right side of my neck and it seemed less swollen, and it was NOT tender... thinking I must be imagining this, I looked in the mirror. I couldn't detect any difference in size. So I figured it was a coincidence.
Look, I don't believe in leprechauns, good luck from a rabbit's foot or anything of the sort, so I don't think I was hoping for "magic", or anything like that.
Tonight I removed our pool filter cartridge for cleaning with the garden hose. As I was cleaning it, I heard Julie walk up behind me and say "Oh my God, this one has gone way down." I had another swollen lymph node on the back of my neck, left side. It was very visible. When I reached my hand back to feel it, it felt dramatically smaller. WT_!
A little while later Jori walked over and agreed with our assessment of the one on the back of my neck.
Could this be?
Not saying I'm cured or anything like that, but if I'm NOT CRAZY, this is pretty damned impressive, huh?
Your intrepid reporter hesitates to even post this because you'll probably think I'm crazy. But friend, I don't think I should hide this from you. I trust you to give me the benefit of the doubt, so I'm going to plunge ahead.
Shortly after I was diagnosed, I noticed that the right side of my neck had become tender. I knew the doctor said I had enlarged lymph nodes there and could actually see that the area was somewhat "swollen". I wouldn't say that it was sore, but the area was slightly but unmistakably tender to the touch. The tenderness did not go away.
Late yesterday afternoon, probably about 7 or 8 hours after my chemo had begun (not finished, but begun) I felt the right side of my neck and it seemed less swollen, and it was NOT tender... thinking I must be imagining this, I looked in the mirror. I couldn't detect any difference in size. So I figured it was a coincidence.
Look, I don't believe in leprechauns, good luck from a rabbit's foot or anything of the sort, so I don't think I was hoping for "magic", or anything like that.
Tonight I removed our pool filter cartridge for cleaning with the garden hose. As I was cleaning it, I heard Julie walk up behind me and say "Oh my God, this one has gone way down." I had another swollen lymph node on the back of my neck, left side. It was very visible. When I reached my hand back to feel it, it felt dramatically smaller. WT_!
A little while later Jori walked over and agreed with our assessment of the one on the back of my neck.
Could this be?
Not saying I'm cured or anything like that, but if I'm NOT CRAZY, this is pretty damned impressive, huh?
1st Day after Chemo 07-27-2010
1st Day after Chemo 07-27-2010
I didn't take my Prednisone until late in the day after Chemo and it made me wired.
I finally went to bed about midnight but couldn't sleep. So I got up and read for a while. I think I got about 3 and 1/2 hours sleep total.
So I decided to take my Prednisone earlier in the day today so I hopefully wouldn't be so wired at bedtime. I think the more dramatic effects wore off early this afternoon.
I have had a little bit of a headache off and on all day. It was only bad enough to take some Tylenol one time in the morning. And I've hardly had any stomach ache at all, but I did take the anti nausea med in the morning (Zofran) as directed by the nurse yesterday. From here on it's only as needed.
Probably my biggest problem today has been hiccups... all afternoon into this evening. Don't know if chemo or my meds have anything to do with that. Hiccups suck, especially when you have to call customers all day.
I'm toting a backpack (chemo-pack?) to work with me with all my meds, instructions, and a sheet on which I record what meds I took, and when. Thinking about putting it into a spreadsheet to print out to make record keeping a little easier. Sheesh, there's lots to track. And if I don't write 'em all down, I'll lose track.
I'm still expecting to get sicker, beginning anytime from tomorrow up until Saturday.
Regards,
Hick
I didn't take my Prednisone until late in the day after Chemo and it made me wired.
I finally went to bed about midnight but couldn't sleep. So I got up and read for a while. I think I got about 3 and 1/2 hours sleep total.
So I decided to take my Prednisone earlier in the day today so I hopefully wouldn't be so wired at bedtime. I think the more dramatic effects wore off early this afternoon.
I have had a little bit of a headache off and on all day. It was only bad enough to take some Tylenol one time in the morning. And I've hardly had any stomach ache at all, but I did take the anti nausea med in the morning (Zofran) as directed by the nurse yesterday. From here on it's only as needed.
Probably my biggest problem today has been hiccups... all afternoon into this evening. Don't know if chemo or my meds have anything to do with that. Hiccups suck, especially when you have to call customers all day.
I'm toting a backpack (chemo-pack?) to work with me with all my meds, instructions, and a sheet on which I record what meds I took, and when. Thinking about putting it into a spreadsheet to print out to make record keeping a little easier. Sheesh, there's lots to track. And if I don't write 'em all down, I'll lose track.
I'm still expecting to get sicker, beginning anytime from tomorrow up until Saturday.
Regards,
Hick
Monday, July 26, 2010
FIRST CHEMO 7-26-2010
FIRST CHEMO 7-26-2010
THIS IS BORING!
Sorry I'm posting this so late. I feel an o'blogation :) to keep this current but we've had a crazy night tonight and I just haven't been able to get it done til now.
Brother Dave is here from big D so he volunteered to accompany me to Chemo. THANKS DAVE!
I intended to be on the road by 6:30 but after I logged in to work and ran my daily report, took a shower and ate my breakfast, it was about 6:40... went through Yorkville and got coffee. We were doing fine but then 1/2 mile from the clinic there was some repaving on Lake Street in Aurora. We walked in at 7:35. My bad. They weren't quite ready for me anyway, so I had to wait another 10 minutes.
7:45 - The first nurse took me back for my blood draw. She took out a ton of vials for my blood and we made small talk while she bled me half to death. THE PORT IS A BEAUTIFUL THING. I only had to have one stick all day. See picture. Beats the hell out of a regular IV. The needle hookup, with the "tail" and everything reminds me of something out of the Matrix.
Only this is for good, not evil.
Then another nurse weighed me: 192 lbs. I've been gaining weight, actually, maybe because I've been ingesting everything in sight, you think? The 12 lbs of blueberry cobbler at the family reunion on Saturday helped. And she took my vitals. All good so far.
Then Dr. R. came in and asked how I was doing, and asked about night sweats. I told him I felt fine and wasn't having any night sweats.
He told me that sometimes after the first Chemo treatment, the tumors might "melt" some. He said some patients think that if they're "melting" that they should then be done but reminded me that we have to complete the entire regimen. I assured him that I was "down with that" so to speak.
Dr. R. logged into the computer and made some notes, placed some orders. Then he shook our hands and sent us off to Chemo.
I got a "private room" which just meant I had about a 10'x10' area with a window and walls adjacent to the window. There was a curtain behind me. I had a comfy recliner with shelf like do-hickeys on either side for cell phone, drinks, laptop, etc. Very cozy. This old guy seemed to like it.
Note: I'm not entirely sure of the sequence and the whatsits of the meds, so I may be wrong on some of this.
The nurse came in (she's pals with Julie's cousin Jan's daughter Stacy, I discovered AFTER, very nice lady). She had me take 2 Tylenols to get started. Then she started me on Benadryl drip. I think this was to ward off any adverse reaction to the Rituxan (made from rodent antigen, I think?). Might have been Zofran too?
Whatever it was, it turned out to be the only thing (so far) to kick my ass. Sleepy, sleepy, sleepy.
She went over my blood results, which were all good. Highlights: wbc 5.4, rbc 5.01, hemo 14.5, hematocrit 41.4, platelets 126. Impressive, isn't it? I look for them all to plunge post chemo. I'm only putting them here so if I list them later we'll have a baseline to compare to. That and the 192 lbs.
But before I got sleepy, I fired up my laptop. Only to find out that while it did connect to their network, it wouldn't let me load any pages..... I didn't want to be "that guy" that is needy and a pain in the ass to the staff, so I just use the laptop to take notes.
And then, sleepy. It took me a while to crash, but when I did, I really did. Dave took a picture of me sleeping but I look like a 252 year old man.
Yeah, the camera adds 10 pounds, everyone knows that. But it also adds 200 YEARS! You might want to write that down. Because I do NOT LOOK LIKE THAT!
(Do I?)
Not posting that picture. If you want to see someone that looks that old, check out King Tut, don't be staring at my decrepit old carcass. Live fast, die young, and leave a good looking corpse? Three strikes on me!
9:03 I'm feeling a little light headed, nurse says that was the Zofran... next time they'll push a little slower.
9:25 Sooooo sleepy, think I'll take a nap, but chemo is next and before I sleep, she starts it.
9: 28 Chemo started with Rituxan. I'm cold and the Nurse gets me a blanket. YESSSSSS! And says they'll ck my vitals in about 1/2 hour... At this point I'm in and out of consciousness.
10:00 Bathroom break. Shortly after they checked vitals and noticed I was freezing to death. They gave me another blanket plus an afghan. Cold, I'm oh so very cold. They have WARMED blankets, which rock!.
"Look at poor grandpa sleeping with 2 blankets and an afghan. He looks, about... oh, 252 years old!... oh my God, he's drooling!"
Just for the record, I did NOT drool.
10:51 Another bathroom break. Then while I doze Dave ducks out for some lunch. My ears itch inside badly. Don't want to look like a newbie, so I'll just suffer silently. If it happens again next time, I'll ask.
11:15 Julie texts, "how's everything?". I text her back that my ears itch, she says she should have come, she could have scratched them. Then she texts me that Dave's at Wendy's do I want anything? No, I'm working on some little snacks I brought in my backpack, trying to push 192 to 195, one tiny bite at a time.
Now I notice that my head/hair itches - Is it already falling out or maybe I didn't get the shampoo rinsed out?
11:40 The scheduler (very nice girl) brings my appointment printouts - the next two Mondays labs, then third Monday (8/16) Chemo again. She asks what I need. Diet Coke appears instantly.
Then, the TV turns itself on. It's a soap. Enough drama in my life, I find something on History, it's Modern Marvels: The History of Chrome! Or some other equally fascinating documentary! How sweet is that? Dave has returned and watches that while he works a crossword. I'm reading a book.
12:35 John break and the drip is done, she then "pushes" 2MG Vincristine. It's in a syringe and she just shoots it into a port in the tubing. She turns on the drip for Cyclophosphamide. Says it will take 30 minutes if I tolerate it well. If I don't tolerate it well (side effect would be stuffy head and nose) she'll back it off to 45. The stuff pretty much raced out of the bag and I didn't have any problems. They unhooked me and we thanked everyone.
Went home and took it easy. Got my scrip for Prednisone filled. Think it makes me chatty and a little wired.
I got tons of calls, visits, texts, etc. asking about me. THANK YOU ALL! I can't adequately express my appreciation. You have all been great. Staff at the clinic was great, too, as usual.
It's 11:05 PM Central Time. I've had a little bit of a vague headache off and on all afternoon, but it hasn't even been enough that I've bothered to take anything for it. And I've had just a little bit of a stomach ache as well, but nothing I can't deal with.
Crossing my fingers to see how I do. Before bed I'll take a Zofran and then take one in the morning also. Then I'm going to live my life as normally as I can.
One down, 9 to go!
THIS IS BORING!
Sorry I'm posting this so late. I feel an o'blogation :) to keep this current but we've had a crazy night tonight and I just haven't been able to get it done til now.
Brother Dave is here from big D so he volunteered to accompany me to Chemo. THANKS DAVE!
I intended to be on the road by 6:30 but after I logged in to work and ran my daily report, took a shower and ate my breakfast, it was about 6:40... went through Yorkville and got coffee. We were doing fine but then 1/2 mile from the clinic there was some repaving on Lake Street in Aurora. We walked in at 7:35. My bad. They weren't quite ready for me anyway, so I had to wait another 10 minutes.
7:45 - The first nurse took me back for my blood draw. She took out a ton of vials for my blood and we made small talk while she bled me half to death. THE PORT IS A BEAUTIFUL THING. I only had to have one stick all day. See picture. Beats the hell out of a regular IV. The needle hookup, with the "tail" and everything reminds me of something out of the Matrix.
Only this is for good, not evil.
Then another nurse weighed me: 192 lbs. I've been gaining weight, actually, maybe because I've been ingesting everything in sight, you think? The 12 lbs of blueberry cobbler at the family reunion on Saturday helped. And she took my vitals. All good so far.
Then Dr. R. came in and asked how I was doing, and asked about night sweats. I told him I felt fine and wasn't having any night sweats.
He told me that sometimes after the first Chemo treatment, the tumors might "melt" some. He said some patients think that if they're "melting" that they should then be done but reminded me that we have to complete the entire regimen. I assured him that I was "down with that" so to speak.
Dr. R. logged into the computer and made some notes, placed some orders. Then he shook our hands and sent us off to Chemo.
I got a "private room" which just meant I had about a 10'x10' area with a window and walls adjacent to the window. There was a curtain behind me. I had a comfy recliner with shelf like do-hickeys on either side for cell phone, drinks, laptop, etc. Very cozy. This old guy seemed to like it.
Note: I'm not entirely sure of the sequence and the whatsits of the meds, so I may be wrong on some of this.
The nurse came in (she's pals with Julie's cousin Jan's daughter Stacy, I discovered AFTER, very nice lady). She had me take 2 Tylenols to get started. Then she started me on Benadryl drip. I think this was to ward off any adverse reaction to the Rituxan (made from rodent antigen, I think?). Might have been Zofran too?
Whatever it was, it turned out to be the only thing (so far) to kick my ass. Sleepy, sleepy, sleepy.
She went over my blood results, which were all good. Highlights: wbc 5.4, rbc 5.01, hemo 14.5, hematocrit 41.4, platelets 126. Impressive, isn't it? I look for them all to plunge post chemo. I'm only putting them here so if I list them later we'll have a baseline to compare to. That and the 192 lbs.
But before I got sleepy, I fired up my laptop. Only to find out that while it did connect to their network, it wouldn't let me load any pages..... I didn't want to be "that guy" that is needy and a pain in the ass to the staff, so I just use the laptop to take notes.
And then, sleepy. It took me a while to crash, but when I did, I really did. Dave took a picture of me sleeping but I look like a 252 year old man.
Yeah, the camera adds 10 pounds, everyone knows that. But it also adds 200 YEARS! You might want to write that down. Because I do NOT LOOK LIKE THAT!
(Do I?)
Not posting that picture. If you want to see someone that looks that old, check out King Tut, don't be staring at my decrepit old carcass. Live fast, die young, and leave a good looking corpse? Three strikes on me!
9:03 I'm feeling a little light headed, nurse says that was the Zofran... next time they'll push a little slower.
9:25 Sooooo sleepy, think I'll take a nap, but chemo is next and before I sleep, she starts it.
9: 28 Chemo started with Rituxan. I'm cold and the Nurse gets me a blanket. YESSSSSS! And says they'll ck my vitals in about 1/2 hour... At this point I'm in and out of consciousness.
10:00 Bathroom break. Shortly after they checked vitals and noticed I was freezing to death. They gave me another blanket plus an afghan. Cold, I'm oh so very cold. They have WARMED blankets, which rock!.
"Look at poor grandpa sleeping with 2 blankets and an afghan. He looks, about... oh, 252 years old!... oh my God, he's drooling!"
Just for the record, I did NOT drool.
10:51 Another bathroom break. Then while I doze Dave ducks out for some lunch. My ears itch inside badly. Don't want to look like a newbie, so I'll just suffer silently. If it happens again next time, I'll ask.
11:15 Julie texts, "how's everything?". I text her back that my ears itch, she says she should have come, she could have scratched them. Then she texts me that Dave's at Wendy's do I want anything? No, I'm working on some little snacks I brought in my backpack, trying to push 192 to 195, one tiny bite at a time.
Now I notice that my head/hair itches - Is it already falling out or maybe I didn't get the shampoo rinsed out?
11:40 The scheduler (very nice girl) brings my appointment printouts - the next two Mondays labs, then third Monday (8/16) Chemo again. She asks what I need. Diet Coke appears instantly.
Then, the TV turns itself on. It's a soap. Enough drama in my life, I find something on History, it's Modern Marvels: The History of Chrome! Or some other equally fascinating documentary! How sweet is that? Dave has returned and watches that while he works a crossword. I'm reading a book.
12:35 John break and the drip is done, she then "pushes" 2MG Vincristine. It's in a syringe and she just shoots it into a port in the tubing. She turns on the drip for Cyclophosphamide. Says it will take 30 minutes if I tolerate it well. If I don't tolerate it well (side effect would be stuffy head and nose) she'll back it off to 45. The stuff pretty much raced out of the bag and I didn't have any problems. They unhooked me and we thanked everyone.
Went home and took it easy. Got my scrip for Prednisone filled. Think it makes me chatty and a little wired.
I got tons of calls, visits, texts, etc. asking about me. THANK YOU ALL! I can't adequately express my appreciation. You have all been great. Staff at the clinic was great, too, as usual.
It's 11:05 PM Central Time. I've had a little bit of a vague headache off and on all afternoon, but it hasn't even been enough that I've bothered to take anything for it. And I've had just a little bit of a stomach ache as well, but nothing I can't deal with.
Crossing my fingers to see how I do. Before bed I'll take a Zofran and then take one in the morning also. Then I'm going to live my life as normally as I can.
One down, 9 to go!
Sunday, July 25, 2010
"cancer wing" - another view
My sister Mary offered up something that hadn't occurred to me:
I can tell you at our office, because we have patients coming in for chemo, dressing changes, etc., that if we’re sick we’re supposed to stay home, they don’t give you any hassle about being sick, because patients with compromised immune systems are coming in and they don’t need us to share an illness with them. Maybe that’s why they separate the cancer center from the rest of the facility?
I can tell you at our office, because we have patients coming in for chemo, dressing changes, etc., that if we’re sick we’re supposed to stay home, they don’t give you any hassle about being sick, because patients with compromised immune systems are coming in and they don’t need us to share an illness with them. Maybe that’s why they separate the cancer center from the rest of the facility?
Friday, July 23, 2010
More Random Thoughts 07-23-2010
BOREDOM WARNING!!! This post is 99% thoughts bouncing around in my head. You might not want to go there!!
More Random Thoughts 07-23-2010
1) This is my first experience with cancer treatment, and hopefully my last, obviously. One thing about it sticks out like a sore thumb and I never noticed it before.
The cancer care facility is dramatically segregated from the rest of the clinic. Although the cancer care section is physically attached to the rest of the clinic, cancer care has its own entrance. Cancer care has its own parking lot. When you go from cancer care to the lab, you might want to pack a lunch, it's a hike and you pass a lot of nothing along the way.
Maybe if you are trying to sell your services (doctors group A versus doctors group B versus clinic C versus hospital group D, etc.) you'd rather soft pedal the cancer part... people going in for a routine exam, or to get their kid's sports physical, or to be seen for a cold or flu would rather not be reminded of the DARK SIDE of medical care. Let's face it, cancer is something we'd rather not think about, so why shouldn't we put it out of sight, to make sure that we keep it out of mind as well?
I'm not saying it's wrong or anything. And it would be phony for me to condemn this only because I have cancer. It's just that now that I'm going through the system the segregation is very obvious.
And when I bounced the subject off Julie, she brought up what should have been an obvious possibility - that the segregation might be more for the cancer patients than for the rest of the clinic patrons. She suggests that maybe cancer patients might feel that inclusion would lead to privacy concerns (if you go to a family doctor, there might be 10,000 reasons.. but there's only ONE reason to go to cancer care), and because all patients in cancer care HAVE cancer, other clinic patients might be inclined to gawk, etc.
And maybe due to all the reasons outlined above it's just really THE RIGHT THING TO DO to segregate cancer care from the rest.
**
2) Not sure how to put this next part and maybe it's just my view as a newer member of "The Club I Didn't Want To Be In". It seems like many fellow patients that I encounter in cancer care look.... embarrassed and act like they would rather not have other patients (like those of us in the waiting area) see them.
Maybe some newer "Club Members", are still in denial.
Or maybe they fear, like I did, that people would treat them differently and avoid talking to them, avoid looking them in the eye IF THEY KNEW. Maybe they feel like people wouldn't laugh or have fun with a cancer patient around because it might somehow seem disrespectful, like having a beer bash in a graveyard. Maybe they felt like their friends would shun them and take them off their party lists because they never know what to say to them and that their presence might just amount to buzzkill.
And honestly, if all I ever talk about is my illness and I don't concern myself with what's going on in my friends' lives, I can see why they'd want to avoid me. If I want to be treated the same as before, I have to make sure that I don't let my affliction 'consume' me and color every interaction I have with my friends. Because that would be when they start taking me off their party list, and with good reason.
Who wants Johnny Buzzkill around, anyway?
But I really can't say how I'd be if my outlook were grim. Who knows how I'd react to getting a prognosis that has X amount of months at the end of it?
I do have to say that my experience with my friends and family has been terrific. Everyone has been very supportive and I think it helps if I'm talking to someone if I just BRING IT UP and discuss it with them as they seem to feel more at ease once the subject is broached. And honestly, sometimes I have to joke about it. Sometimes my dark humor puts people off, but I guess the way I'm wired I feel a release of tension if I can have a little laugh once in a while.
I will spare you any of the specific jokes.
You're welcome.
**
3) After I visited the oncologist for the first time, I started a folder to put some of the handouts in. I didn't want to put "CANCER" on the tab, so for some reason "The Big C" popped in my head. I didn't think too much about it. When I talked to the nurse at the clinic the other day she said "You're about my age. When I was a kid my grandfather got cancer. In those days it wasn't discussed. You were ashamed if someone in your family had cancer. And, you didn't call it cancer, you called it 'The Big C' ". BINGO! I must have had that in my head from back in the day. And maybe her comments shine a light on sections 1 & 2 in this post.
When Julie saw the tab on the folder, she didn't like it, so she added a comment:
**
4) I said there was a med that ended in -purine, I was wrong... From wiki:
-- Allopurinol is a drug used primarily to treat hyperuricemia (excess uric acid in blood plasma) and its complications, including chronic gout. Allopurinol commonly is used as prophylaxis with chemotherapeutic treatments.-- The nurse called, I am supposed to start taking allopurinol today. Yikes, I haven't even had one drop of chemo yet!
More Random Thoughts 07-23-2010
1) This is my first experience with cancer treatment, and hopefully my last, obviously. One thing about it sticks out like a sore thumb and I never noticed it before.
The cancer care facility is dramatically segregated from the rest of the clinic. Although the cancer care section is physically attached to the rest of the clinic, cancer care has its own entrance. Cancer care has its own parking lot. When you go from cancer care to the lab, you might want to pack a lunch, it's a hike and you pass a lot of nothing along the way.
Maybe if you are trying to sell your services (doctors group A versus doctors group B versus clinic C versus hospital group D, etc.) you'd rather soft pedal the cancer part... people going in for a routine exam, or to get their kid's sports physical, or to be seen for a cold or flu would rather not be reminded of the DARK SIDE of medical care. Let's face it, cancer is something we'd rather not think about, so why shouldn't we put it out of sight, to make sure that we keep it out of mind as well?
I'm not saying it's wrong or anything. And it would be phony for me to condemn this only because I have cancer. It's just that now that I'm going through the system the segregation is very obvious.
And when I bounced the subject off Julie, she brought up what should have been an obvious possibility - that the segregation might be more for the cancer patients than for the rest of the clinic patrons. She suggests that maybe cancer patients might feel that inclusion would lead to privacy concerns (if you go to a family doctor, there might be 10,000 reasons.. but there's only ONE reason to go to cancer care), and because all patients in cancer care HAVE cancer, other clinic patients might be inclined to gawk, etc.
And maybe due to all the reasons outlined above it's just really THE RIGHT THING TO DO to segregate cancer care from the rest.
**
2) Not sure how to put this next part and maybe it's just my view as a newer member of "The Club I Didn't Want To Be In". It seems like many fellow patients that I encounter in cancer care look.... embarrassed and act like they would rather not have other patients (like those of us in the waiting area) see them.
Maybe some newer "Club Members", are still in denial.
Or maybe they fear, like I did, that people would treat them differently and avoid talking to them, avoid looking them in the eye IF THEY KNEW. Maybe they feel like people wouldn't laugh or have fun with a cancer patient around because it might somehow seem disrespectful, like having a beer bash in a graveyard. Maybe they felt like their friends would shun them and take them off their party lists because they never know what to say to them and that their presence might just amount to buzzkill.
And honestly, if all I ever talk about is my illness and I don't concern myself with what's going on in my friends' lives, I can see why they'd want to avoid me. If I want to be treated the same as before, I have to make sure that I don't let my affliction 'consume' me and color every interaction I have with my friends. Because that would be when they start taking me off their party list, and with good reason.
Who wants Johnny Buzzkill around, anyway?
But I really can't say how I'd be if my outlook were grim. Who knows how I'd react to getting a prognosis that has X amount of months at the end of it?
I do have to say that my experience with my friends and family has been terrific. Everyone has been very supportive and I think it helps if I'm talking to someone if I just BRING IT UP and discuss it with them as they seem to feel more at ease once the subject is broached. And honestly, sometimes I have to joke about it. Sometimes my dark humor puts people off, but I guess the way I'm wired I feel a release of tension if I can have a little laugh once in a while.
I will spare you any of the specific jokes.
You're welcome.
**
3) After I visited the oncologist for the first time, I started a folder to put some of the handouts in. I didn't want to put "CANCER" on the tab, so for some reason "The Big C" popped in my head. I didn't think too much about it. When I talked to the nurse at the clinic the other day she said "You're about my age. When I was a kid my grandfather got cancer. In those days it wasn't discussed. You were ashamed if someone in your family had cancer. And, you didn't call it cancer, you called it 'The Big C' ". BINGO! I must have had that in my head from back in the day. And maybe her comments shine a light on sections 1 & 2 in this post.
When Julie saw the tab on the folder, she didn't like it, so she added a comment:
**
4) I said there was a med that ended in -purine, I was wrong... From wiki:
-- Allopurinol is a drug used primarily to treat hyperuricemia (excess uric acid in blood plasma) and its complications, including chronic gout. Allopurinol commonly is used as prophylaxis with chemotherapeutic treatments.-- The nurse called, I am supposed to start taking allopurinol today. Yikes, I haven't even had one drop of chemo yet!
Wednesday, July 21, 2010
Pre Chemo
I got my Chemotherapy 101 class this afternoon.
I will get 3 drugs via my port - Cyclophosphamide, Vincristine, and Rituximab.
I will take Prednisone orally. I think that is supposed to help me not get sick due to my immune system being compromised. Two other prescriptions will be given to combat nausea and vomiting. And there was one other med that might be prescribed to help my kidneys out (they will be in overdrive because of all the cancerous tissue that's being killed off), it was called something that ended in "-purine".
I would try to describe what each med does but at this point I am very confused myself. There are tons of side effects, and there are other medicines they prescribe to treat the side effects, and so on and so on. My treatments should take 4.5 to 5 hours each.
Here are some of the more interesting possible side effects: "bloody vomit (isn't that a British heavy metal band?) or vomit that looks like coffee grounds", "uncontrollable eye movements" (are you looking at me? why are you looking at me?), "Blood in your urine or stools, painful urination".
One of the "less serious side effects" is "irregular menstrual periods", but if I get THAT, oh boy, it won't seem "less serious" to me!
There's lots more, but you get the idea.
The nurse gave me a lot of information, most of which I've already forgotten. She was hopeful that I would NOT be very sick based on 1) the meds I'm getting and 2) my age (she said I was young!) But she also said everyone's different and I'd just have to see what happens.
White blood cells, red blood cells, hemoglobin. All can be adversely affected by chemotherapy. I could have issues with susceptibility to infection, bleeding, bruising, shortness of breath, etc.
And before each treatment, they will draw my blood and make sure my counts have recovered sufficiently from my last chemo session to allow another chemo session. If the levels are too low, they'll send me home and try again later.
See if you can pick up what I'm laying down here - she said that within 72 hours of the chemo treatment, a guy would have to be careful so that he didn't give his wife chemotherapy, too.
And that's all I have to say about that.
She said that cancer cells are just cells that don't know when to die.
OK, so let's help them die!
She took me back to the treatment room and we set up my first visit, Monday July 26th, 2010 @ 7:30. The scheduler and all the nurses seemed very nice and the space seemed bright and almost cheery.
I asked THE critical question- "do you have WI-FI?". Yes, they do. I will be bringin' the netbook.
I'm anxious to get started.
I will get 3 drugs via my port - Cyclophosphamide, Vincristine, and Rituximab.
I will take Prednisone orally. I think that is supposed to help me not get sick due to my immune system being compromised. Two other prescriptions will be given to combat nausea and vomiting. And there was one other med that might be prescribed to help my kidneys out (they will be in overdrive because of all the cancerous tissue that's being killed off), it was called something that ended in "-purine".
I would try to describe what each med does but at this point I am very confused myself. There are tons of side effects, and there are other medicines they prescribe to treat the side effects, and so on and so on. My treatments should take 4.5 to 5 hours each.
Here are some of the more interesting possible side effects: "bloody vomit (isn't that a British heavy metal band?) or vomit that looks like coffee grounds", "uncontrollable eye movements" (are you looking at me? why are you looking at me?), "Blood in your urine or stools, painful urination".
One of the "less serious side effects" is "irregular menstrual periods", but if I get THAT, oh boy, it won't seem "less serious" to me!
There's lots more, but you get the idea.
The nurse gave me a lot of information, most of which I've already forgotten. She was hopeful that I would NOT be very sick based on 1) the meds I'm getting and 2) my age (she said I was young!) But she also said everyone's different and I'd just have to see what happens.
White blood cells, red blood cells, hemoglobin. All can be adversely affected by chemotherapy. I could have issues with susceptibility to infection, bleeding, bruising, shortness of breath, etc.
And before each treatment, they will draw my blood and make sure my counts have recovered sufficiently from my last chemo session to allow another chemo session. If the levels are too low, they'll send me home and try again later.
See if you can pick up what I'm laying down here - she said that within 72 hours of the chemo treatment, a guy would have to be careful so that he didn't give his wife chemotherapy, too.
And that's all I have to say about that.
She said that cancer cells are just cells that don't know when to die.
OK, so let's help them die!
She took me back to the treatment room and we set up my first visit, Monday July 26th, 2010 @ 7:30. The scheduler and all the nurses seemed very nice and the space seemed bright and almost cheery.
I asked THE critical question- "do you have WI-FI?". Yes, they do. I will be bringin' the netbook.
I'm anxious to get started.
My Hump
Bandage came off my port. I think I'm supposed to wait for the steri strip to fall off by itself. It looks like you can see where they tested it with 2 pokes
I have an appointment this afternoon with the oncologist's nurse for "Chemotherapy 101". I'll update the 'blog sometime later today / tonight. I'll also find out today when my chemo starts.
Saturday, July 17, 2010
My Head 07-17-2010
"Where my head is at" right now
I am anxious to get started on chemo. I am feeling good about my chances. I am not, by any means, down in the dumps. I am able to have a good time and have a laugh with friends and family. I hope I'm not projecting anything besides that.
I feel very lucky to have so much support from so many people. As I had mentioned before, it is a very humbling experience to find out that you have a lot of people who care about you and are on your side. At some point I question if I'm really worthy.
One thing that I've thought about quite a bit:
I DON'T FEEL SICK but I have cancer. The only time I will feel sick IS WHEN THEY TRY TO MAKE ME WELL.
Chew on that a minute.
My biggest frustration point right now is that I can't ride. That will be solved Monday, at least until chemo starts. I hope I don't get so sick with chemo that I am unable to ride. My cycling plans have been disrupted since my surgery. I wanted to complete some longer rides this summer but the oncologist said to make sure I didn't wear myself down and I would be afraid that an 80 or 100 mile ride might do just that.
It looks like longer rides will have to wait until next spring / summer. If that's the worst problem I have, then honestly, I have nothing to complain about.
The takeaway: I am in good spirits and (cautiously) optimistic.
I am anxious to get started on chemo. I am feeling good about my chances. I am not, by any means, down in the dumps. I am able to have a good time and have a laugh with friends and family. I hope I'm not projecting anything besides that.
I feel very lucky to have so much support from so many people. As I had mentioned before, it is a very humbling experience to find out that you have a lot of people who care about you and are on your side. At some point I question if I'm really worthy.
One thing that I've thought about quite a bit:
I DON'T FEEL SICK but I have cancer. The only time I will feel sick IS WHEN THEY TRY TO MAKE ME WELL.
Chew on that a minute.
My biggest frustration point right now is that I can't ride. That will be solved Monday, at least until chemo starts. I hope I don't get so sick with chemo that I am unable to ride. My cycling plans have been disrupted since my surgery. I wanted to complete some longer rides this summer but the oncologist said to make sure I didn't wear myself down and I would be afraid that an 80 or 100 mile ride might do just that.
It looks like longer rides will have to wait until next spring / summer. If that's the worst problem I have, then honestly, I have nothing to complain about.
The takeaway: I am in good spirits and (cautiously) optimistic.
Random Thoughts 07-17-2010
Random Thoughts 07-17-2010
Completion Date
It's occurring to me now that if all goes according to plan, I won't be done until WAY PAST the traditional US Independence Day in 2012. Completing chemo would figure to be sometime in the late fall or early winter of 2012. I guess Thanksgiving or Christmas might be closer to when I'll finish. When I talked to the oncologist initially, I thought he said I'd have 2 years total, but it looks more like I'll have 15 wks + 2 years. Independence Day is still a good name, I guess, and Thanksgiving or Christmas would be good times to celebrate.
Do I think people with cancer are Weak?
My 9-year old niece Hallie (she's actually my grand-niece) heard from someone that I had cancer, before her parents had a chance to talk to her about it. She came to me and asked, "Do you have cancer?" and I said "Yes, I do." I then explained to her as simply as I could that my doctor thought I would be OK but that I would have to be treated for 2 years (obviously, there was more interaction with Hallie after that, both with me and with her parents which I won't go into here).
Hallie's reaction was very even and calm. I'm not sure she knew what having cancer might mean.
But, when I admitted to Hallie that I had cancer, I FELT that I'd let her down and disappointed her somehow. I felt that she probably viewed me as diminished in some way, and probably even as weak. I am fully aware that there is no basis in logic for that perception. But I'm also aware that I genuinely felt that way. There would be no point in denying it. My feelings were all projected on the situation by ME, they had nothing to do with Hallie's reaction.
When I connected the dots and realized that I have some bulls--- preconceived notions about cancer MYSELF, it was quite an epiphany.
Completion Date
It's occurring to me now that if all goes according to plan, I won't be done until WAY PAST the traditional US Independence Day in 2012. Completing chemo would figure to be sometime in the late fall or early winter of 2012. I guess Thanksgiving or Christmas might be closer to when I'll finish. When I talked to the oncologist initially, I thought he said I'd have 2 years total, but it looks more like I'll have 15 wks + 2 years. Independence Day is still a good name, I guess, and Thanksgiving or Christmas would be good times to celebrate.
Do I think people with cancer are Weak?
My 9-year old niece Hallie (she's actually my grand-niece) heard from someone that I had cancer, before her parents had a chance to talk to her about it. She came to me and asked, "Do you have cancer?" and I said "Yes, I do." I then explained to her as simply as I could that my doctor thought I would be OK but that I would have to be treated for 2 years (obviously, there was more interaction with Hallie after that, both with me and with her parents which I won't go into here).
Hallie's reaction was very even and calm. I'm not sure she knew what having cancer might mean.
But, when I admitted to Hallie that I had cancer, I FELT that I'd let her down and disappointed her somehow. I felt that she probably viewed me as diminished in some way, and probably even as weak. I am fully aware that there is no basis in logic for that perception. But I'm also aware that I genuinely felt that way. There would be no point in denying it. My feelings were all projected on the situation by ME, they had nothing to do with Hallie's reaction.
When I connected the dots and realized that I have some bulls--- preconceived notions about cancer MYSELF, it was quite an epiphany.
Friday, July 16, 2010
MediPort Insertion 7-16-2010
MediPort Insertion 7-16-2010
*** BEGIN SUMMARY ***
* Got my mediport this morning
* Wasn't bad at all
* Boring details below
*** END SUMMARY ***
This went off without a hitch. Here's link to a mediport page (you'll have to use your BACK button to get back here, blogspot doesn't seem to open in a new tab for some reason). This is the same spiel my surgeon gave me:
http://www.markfuscomd.com/port.htm
Adding a mediport will allow them to administer chemo without poking the top of my hand. The beauty of it is that I can shower, swim, anything. They just poke through the skin, through the silicone, into the port and admin your chemo, draw blood, whatever. When they pull the needle out, the silicone seals right back up.
Here's the IV they gave me this morning, for instance.
Getting conventional IVs repeatedly over a short period of time causes problems. Plus they are painful. One every couple years is no problem. But when you are going to have several over a short period of time, you can have problems, including collapsing or rolling veins, infection, bruising, etc. Not to mention that your hands feel like a pincushion. Not like I know, but this is what I was told :).
The chemo is rough on your veins and it can become very difficulty to get a conventional IV in your hand. The mediport solves a lot of problems and is a real godsend for the patient (and the Drs. and nurses, as well). The surgeon told me she had a patient that had one in for 9 years!
Really the only maintenance is to flush them w/heparin or something so you don't get clots. This has to be done monthly.
I had no problems with this surgery. I think I got the twilight anesthesia. I don't remember anything beginning shortly after they wheeled me into the o.r. Went in at 9:00, surgery at 10:00, I think I was home by 12:30, even after stopping for a bag of bagels. No muss, no fuss.
Right now, about 2 PM, I'm watching the Tour De France and 'blogging w/no problems. Feels like maybe I got punched in the shoulder, but it's really not too bad.
This port will be in for the duration which s/be 2+ years.
Here's a lousy picture of it. After the bandage comes off, I'll try to post a better picture. This
picture somewhat distorts the location, I'd say it's 1 & 1/2" below the collarbone and about 3" from my armpit.
Here's the biggest pain of the day, the sorry-ass slippers they make you wear. They made me feel like a girl (nothing against girls, I love girls).
*** BEGIN SUMMARY ***
* Got my mediport this morning
* Wasn't bad at all
* Boring details below
*** END SUMMARY ***
This went off without a hitch. Here's link to a mediport page (you'll have to use your BACK button to get back here, blogspot doesn't seem to open in a new tab for some reason). This is the same spiel my surgeon gave me:
http://www.markfuscomd.com/port.htm
Adding a mediport will allow them to administer chemo without poking the top of my hand. The beauty of it is that I can shower, swim, anything. They just poke through the skin, through the silicone, into the port and admin your chemo, draw blood, whatever. When they pull the needle out, the silicone seals right back up.
Here's the IV they gave me this morning, for instance.
Getting conventional IVs repeatedly over a short period of time causes problems. Plus they are painful. One every couple years is no problem. But when you are going to have several over a short period of time, you can have problems, including collapsing or rolling veins, infection, bruising, etc. Not to mention that your hands feel like a pincushion. Not like I know, but this is what I was told :).The chemo is rough on your veins and it can become very difficulty to get a conventional IV in your hand. The mediport solves a lot of problems and is a real godsend for the patient (and the Drs. and nurses, as well). The surgeon told me she had a patient that had one in for 9 years!
Really the only maintenance is to flush them w/heparin or something so you don't get clots. This has to be done monthly.
I had no problems with this surgery. I think I got the twilight anesthesia. I don't remember anything beginning shortly after they wheeled me into the o.r. Went in at 9:00, surgery at 10:00, I think I was home by 12:30, even after stopping for a bag of bagels. No muss, no fuss.
Right now, about 2 PM, I'm watching the Tour De France and 'blogging w/no problems. Feels like maybe I got punched in the shoulder, but it's really not too bad.
This port will be in for the duration which s/be 2+ years.
Here's a lousy picture of it. After the bandage comes off, I'll try to post a better picture. This
picture somewhat distorts the location, I'd say it's 1 & 1/2" below the collarbone and about 3" from my armpit.Here's the biggest pain of the day, the sorry-ass slippers they make you wear. They made me feel like a girl (nothing against girls, I love girls).
Cell Phone Update - port is in
Port is in. I am groggy. It was not bad. Doc said i can bike monday.....Yesssssss!
Thursday, July 15, 2010
Medi port insertion
Medi port insertion tomorrow morning 7/16, 10 am. Day off work. Another hole in this old body.
DISCLAIMER
DISCLAIMER - Obviously, I have no clue what I'm doing w/regards to punctuation, grammar, subject / verb agreement, spelling, etc. And I freely admit it. I know my quotation marks are all hosed. This is obvious to me as I read m' 'blog.
I am ashamed of myself, especially when I think TEACHERS are reading this (sister in law Chris, bro Dave). Had I paid attn in grade school rather than trying to impress the la-dies with arm farts and my Beatles 'do, maybe my language arts skills would be a little sharper. Sorry.
I am ashamed of myself, especially when I think TEACHERS are reading this (sister in law Chris, bro Dave). Had I paid attn in grade school rather than trying to impress the la-dies with arm farts and my Beatles 'do, maybe my language arts skills would be a little sharper. Sorry.
Wednesday, July 14, 2010
Bone Marrow Biopsy and Aspiration 7-7-2010
Bone Marrow Biopsy and Aspiration 7-7-2010
*** THIS POST WAS PUBLISHED OUT OF SEQUENCE. It was supposed to be posted before the 7/13 Oncologist visit, but I wasn't finished with it at that time. ***
** NOTE** I have recently been made aware of just how BO-RING some of my posts are.
Sorry about that. I guess I've been trying to get an accurate record, for whatever reason...maybe so if someone else is going to have the same procedure/experience, they can get an idea of what to expect. Or maybe because I just start writing and can't stop.
Anyway, in cases of long, drawn out, BO-RING posts, I'll try to give a summary at the beginning so in case someone doesn't want to suffer through all the details, they can just read the summary.
There. Are we friends again?
** BEGIN SUMMARY SECTION**
* Bone Marrow Biopsy and Aspiration HURTS!
* I have very hard bones.
* The good news: the resulting scars are tiny, considering.
** END SUMMARY SECTION**
I've been dreading this appt since the Dr. asked how my pain tolerance was.
I broke my own cardinal rule - I Googled bone marrow biopsy on the internet and saw some pictures that made me cringe. So I quickly stopped looking, but the damage was done.
I left from work to go to the clinic. Our neighbor Steve (wife is Laurie, neighbors and "BFF"s for 11 years) gave Julie a ride to the clinic to meet me so that she could drive me home. Julie had told me that she would prefer not to be in the room when the procedure was done. I have no problem with that as I know, no matter how painful it is, that there's really nothing she can do for me. It's not like I'm going to die from it or anything. And I think seeing someone in pain makes her feel helpless.
The nurse calls us in to the procedure room. She takes my vitals. Then she says the doctor will be in shortly. Two lab techs, both female, come into the room, introduce themselves, and start their prep work.
They have a bunch of glass slides and assorted paraphernalia. At this point, Julie wishes me the best of luck and darts out of the room. While she's catching up on the latest People Magazine, I'll have a doctor punching holes in both hips. How supportive of her!
When the doctor comes in, he asks where my wife is. I tell him, "You might have seen her vapor trail. "
The techs laugh, a little too quickly. I sense some nervous apprehension on their part.
They have me lie on the procedure table, on my left side. The doctor asks me to lift my shirt up and loosen up my cargo shorts. He then pushes down the waistband of my underwear to just below my waist, for access to the target (ouch!) area. He finds his landmarks with his fingers on my lower back /waist, and marks his targets with a pen. The targets are located on either side of my spine, probably 2" or so from center line. He puts a drape over my back and cleans my skin with what I assume to be betadine. He asks the technicians to prepare their material.
Here's an illustration from a Mayo Clinic website:
http://www.mayoclinic.com/health/medical/IM01819
Yeah, ouch!
The doctor then tells me that he'll start with my right side and that the local anesthesia will be first. He says I'll feel a bee sting followed by some pressure. I feel the bee sting, and then I think he waited a while and then started to move the needle around and inject the flesh around where he would be working. There was some pain associated with that, but not too much. Then he waited a while for the anesthesia to take effect.
I didn't see what instrument he used and I really didn't want to. When he started, I was aware of pressure. Quite a bit of pressure, actually. Some of it hurt a lot. At some point, he told me I had "tough bones". I told him that I had never broken a bone. He said he believed that.
The techs were trying to take my mind off the pain by engaging me in conversation. We talk about our families.
The whole time we're talking, the Dr. continues working on me, and some of it is very painful, to the point of what I'd call excruciating. But the peaks don't last too long, at least. It's bearable. Every time the doctor senses I am in a lot of pain, he stops and asks if I'm OK. Compassionate guy, for sure.
And one of the techs gets me a Kleenex as, yes, ONE lonely paindrop is working its way down my cheek. She also tells me that if it would help, she'd hold my hand. Sweet of her to ask, but that would make me a complete wuss, so I politely decline. Nice lady.
And now I see why the techs were so nervous. This is no fun and I'm sure when someone has a low tolerance for pain, it can get pretty stressful.
He is providing the techs with specimens which they process. Some of it appears to be blood which goes on the glass slides and there is something else, too.
I ask the doctor if there are 2 systems. Otherwise, why sample both the left AND the right sides? He told me was that it was better to have a larger sample size, it would make it less likely that they would miss something. He says if I would rather NOT do the other side, if it was too painful... and I tell him my question was merely academic and that I am fine with him doing the other side. Finally, he is done with my right side. He moves the drape and prepares to do the other side.
He preps the area, gives me the anesthesia and begins to work. I am feeling a TON of pressure, and the doctor is obviously really bearing down. He is having a tough time trying to get through the bone, evidently. He tries again as I brace myself. After a while, he says "I give up. I can't get through on that side. I'm not going to put you through any more. I'm sure we'll have a large enough sample with what we've got. And the results are not going to change what we already know anyway." .... Well, OK, Doc... if you're SURE....
That was a relief. The techs seem to breathe a sigh of relief, also. They complete their work and gather up their material and specimens. The doctor asks them to show me one of their specimens. It's a piece of bone or marrow (?), about the diameter of a wooden kitchen match and it appears to be about 3/8" long. It's floating in a plastic tube... awfully small, considering.
I'd like to think that was the last time I go through that, but I doubt that it is. I imagine that at some point they'll do another PET scan and another bone marrow biopsy / aspiration. I'm guessing that the initial passes of these 2 tests are to get a baseline that they can compare to sometime during / after chemotherapy.
The doctor bandages me up and gives me aftercare instructions. They tell me to sit up, slowly. I thank the techs as they exit. The one who offered to hold my hand squeezes my forearm and wishes me good luck.
An angel, right here on earth.
*********** PIX ***********
IMMEDIATELY AFTER PROCEDURE
(That's blood and betadine on my back and waistband. Honest!)
TWO DAYS LATER
Barely visible
*** THIS POST WAS PUBLISHED OUT OF SEQUENCE. It was supposed to be posted before the 7/13 Oncologist visit, but I wasn't finished with it at that time. ***
** NOTE** I have recently been made aware of just how BO-RING some of my posts are.
Sorry about that. I guess I've been trying to get an accurate record, for whatever reason...maybe so if someone else is going to have the same procedure/experience, they can get an idea of what to expect. Or maybe because I just start writing and can't stop.
Anyway, in cases of long, drawn out, BO-RING posts, I'll try to give a summary at the beginning so in case someone doesn't want to suffer through all the details, they can just read the summary.
There. Are we friends again?
** BEGIN SUMMARY SECTION**
* Bone Marrow Biopsy and Aspiration HURTS!
* I have very hard bones.
* The good news: the resulting scars are tiny, considering.
** END SUMMARY SECTION**
I've been dreading this appt since the Dr. asked how my pain tolerance was.
I broke my own cardinal rule - I Googled bone marrow biopsy on the internet and saw some pictures that made me cringe. So I quickly stopped looking, but the damage was done.
I left from work to go to the clinic. Our neighbor Steve (wife is Laurie, neighbors and "BFF"s for 11 years) gave Julie a ride to the clinic to meet me so that she could drive me home. Julie had told me that she would prefer not to be in the room when the procedure was done. I have no problem with that as I know, no matter how painful it is, that there's really nothing she can do for me. It's not like I'm going to die from it or anything. And I think seeing someone in pain makes her feel helpless.
The nurse calls us in to the procedure room. She takes my vitals. Then she says the doctor will be in shortly. Two lab techs, both female, come into the room, introduce themselves, and start their prep work.
They have a bunch of glass slides and assorted paraphernalia. At this point, Julie wishes me the best of luck and darts out of the room. While she's catching up on the latest People Magazine, I'll have a doctor punching holes in both hips. How supportive of her!
When the doctor comes in, he asks where my wife is. I tell him, "You might have seen her vapor trail. "
The techs laugh, a little too quickly. I sense some nervous apprehension on their part.
They have me lie on the procedure table, on my left side. The doctor asks me to lift my shirt up and loosen up my cargo shorts. He then pushes down the waistband of my underwear to just below my waist, for access to the target (ouch!) area. He finds his landmarks with his fingers on my lower back /waist, and marks his targets with a pen. The targets are located on either side of my spine, probably 2" or so from center line. He puts a drape over my back and cleans my skin with what I assume to be betadine. He asks the technicians to prepare their material.
Here's an illustration from a Mayo Clinic website:
http://www.mayoclinic.com/health/medical/IM01819
Yeah, ouch!
The doctor then tells me that he'll start with my right side and that the local anesthesia will be first. He says I'll feel a bee sting followed by some pressure. I feel the bee sting, and then I think he waited a while and then started to move the needle around and inject the flesh around where he would be working. There was some pain associated with that, but not too much. Then he waited a while for the anesthesia to take effect.
I didn't see what instrument he used and I really didn't want to. When he started, I was aware of pressure. Quite a bit of pressure, actually. Some of it hurt a lot. At some point, he told me I had "tough bones". I told him that I had never broken a bone. He said he believed that.
The techs were trying to take my mind off the pain by engaging me in conversation. We talk about our families.
The whole time we're talking, the Dr. continues working on me, and some of it is very painful, to the point of what I'd call excruciating. But the peaks don't last too long, at least. It's bearable. Every time the doctor senses I am in a lot of pain, he stops and asks if I'm OK. Compassionate guy, for sure.
And one of the techs gets me a Kleenex as, yes, ONE lonely paindrop is working its way down my cheek. She also tells me that if it would help, she'd hold my hand. Sweet of her to ask, but that would make me a complete wuss, so I politely decline. Nice lady.
And now I see why the techs were so nervous. This is no fun and I'm sure when someone has a low tolerance for pain, it can get pretty stressful.
He is providing the techs with specimens which they process. Some of it appears to be blood which goes on the glass slides and there is something else, too.
I ask the doctor if there are 2 systems. Otherwise, why sample both the left AND the right sides? He told me was that it was better to have a larger sample size, it would make it less likely that they would miss something. He says if I would rather NOT do the other side, if it was too painful... and I tell him my question was merely academic and that I am fine with him doing the other side. Finally, he is done with my right side. He moves the drape and prepares to do the other side.
He preps the area, gives me the anesthesia and begins to work. I am feeling a TON of pressure, and the doctor is obviously really bearing down. He is having a tough time trying to get through the bone, evidently. He tries again as I brace myself. After a while, he says "I give up. I can't get through on that side. I'm not going to put you through any more. I'm sure we'll have a large enough sample with what we've got. And the results are not going to change what we already know anyway." .... Well, OK, Doc... if you're SURE....
That was a relief. The techs seem to breathe a sigh of relief, also. They complete their work and gather up their material and specimens. The doctor asks them to show me one of their specimens. It's a piece of bone or marrow (?), about the diameter of a wooden kitchen match and it appears to be about 3/8" long. It's floating in a plastic tube... awfully small, considering.
I'd like to think that was the last time I go through that, but I doubt that it is. I imagine that at some point they'll do another PET scan and another bone marrow biopsy / aspiration. I'm guessing that the initial passes of these 2 tests are to get a baseline that they can compare to sometime during / after chemotherapy.
The doctor bandages me up and gives me aftercare instructions. They tell me to sit up, slowly. I thank the techs as they exit. The one who offered to hold my hand squeezes my forearm and wishes me good luck.
An angel, right here on earth.
*********** PIX ***********
IMMEDIATELY AFTER PROCEDURE
(That's blood and betadine on my back and waistband. Honest!)
TWO DAYS LATER
Barely visible
Tuesday, July 13, 2010
7-13-2010 Oncologist visit
7-13-2010 Oncologist visit
Quick update -
Visited the oncologist this aftn.
The short version -
I'll have a port put in, probably some time next week, then I'll start chemo sometime after July 24th. He said waiting a while to start will be of no significance.
Dr. R. said nothing has changed with regards to treatment, altho they DID find more lymphoma in my chest on the PET scan. Also, he said the bone marrow showed cancer as well. He had said previously that he wouldn't be surprised if both those things happened.
I'll have chemo every three weeks, 6 treatments.
Following that, I'll have 4 treatments with 6 months between each.
He said they'd probably do a PET scan after 3 treatments or so to see how it's going.
I asked how long he thought I'd had the lymphoma and he said "years".
Quick update -
Visited the oncologist this aftn.
The short version -
I'll have a port put in, probably some time next week, then I'll start chemo sometime after July 24th. He said waiting a while to start will be of no significance.
Dr. R. said nothing has changed with regards to treatment, altho they DID find more lymphoma in my chest on the PET scan. Also, he said the bone marrow showed cancer as well. He had said previously that he wouldn't be surprised if both those things happened.
I'll have chemo every three weeks, 6 treatments.
Following that, I'll have 4 treatments with 6 months between each.
He said they'd probably do a PET scan after 3 treatments or so to see how it's going.
I asked how long he thought I'd had the lymphoma and he said "years".
Monday, July 12, 2010
Genesis 7-6-2010
Genesis 7-6-2010
After I sent the email below to my ol' buddy, Buck, from my Lucent days, I decided to do this 'blog.
Although the email really was the beginning of my documenting my journey, I went back and started at the very beginning (the discovery post) and then worked my way forward.
I worked with Buck years ago at Lucent. We re-connected through email several years ago and have supported each through numerous personal (and cycling) issues via email over the years.
Some of this might be re-hashing some earlier content. I apologize for that. But it also breaks at least some new ground. And it's a kind of round-up of info up to that date as well.
*********
7/6/2010
Email to Buck
Hey,
I haven't been riding my bike much lately. July 2nd was the first
day I'd been in the saddle in over two weeks - doctor's orders following
surgery.
The picture is of me on Independence Day weekend 2010, BACK
IN THE SADDLE. The LIVESTRONG accessories are much more
meaningful to me than they were previously. I was recently
diagnosed with cancer. Of all the ways I WANTED to be like Lance,
this was certainly NOT one of them!
A while back I noticed a lump on my throat, between my Adam's
apple and my chin... one thing led to another, including surgery for
a biopsy of the growth. On June 23rd, 2010 my wife and I were
told that I have non-Hodgkins lymphoma.
As you can imagine, my life has changed, and quickly. I am in a
staging phase presently. They are assessing my condition. The
last test is a bone marrow biopsy. They'll take marrow from both
hips tomorrow. I have a consult with the oncologist on 7/13, at
which time he'll let me in on the firmed up plan of attack. I'm
hoping there are no additional surprises still waiting for me.
If all goes as he told me last week, I'm in for 6 initial chemotherapy
treatments, one every 3 weeks, followed by maintenance chemotherapy,
those treatments less frequent. He told me the total duration for chemo
should be about 24 months. Which would take me, roughly, to July 4th,
2012.
Every campaign worth pursuing has a catchy slogan. I've decided to
name my campaign "Independence Day 2012". My thinking is that I can
rally round a firm date (understanding that the date could slide
either way a little bit) rather than a vague, open ended target.
Also, I can tie in independence from the British with my independence
from cancer... admittedly, it's a little hokey, but I think it gives me
a clear target and a goal and it's not FOREVER, it's just 2 short years.
Years ago, one of my sports heroes, Walter Payton, was diagnosed with
a terminal illness. At the time, he said something I didn't understand.
He said that being given notice that your days were numbered, rather than
dying suddenly, was a gift. I drew a total blank on that at the time...
My doctor is optimistic and confident and I'm hanging my hat on that.
He has told me that my cancer is slow growing and that, depending on
your age when it strikes you, you might not even treat it. He
did advise me to treat my cancer and I do plan to win this fight. Either
way, it has changed my life.
In the least likely of places, revelations present themselves. I can't
even begin to tell you how many people, some of them unknown to me
previously, have offered me their love and support. Friends and family
members are slipping on LIVESTRONG bracelets. It has been an
unbelievably moving and humbling experience.
I now understand what Walter Payton meant. Had I fallen asleep and run
my truck into a highway support at speed, I never would have known how many
people care about me. Cancer has presented me with an unexpected gift.
The world looked a little different after I was first diagnosed. Now I'm
starting to get my mind around this. I am not bitter and I have no reason
to be. I've been very lucky to have lived this life. Many others have not
been as lucky as I've been. Every day is truly a gift and I intend to treat
each as such. And I'll ride when I can.
With assistance from my doctors, friends, and family, my plan is to
survive and get my life back on track.
And I'm grateful for the opportunity.
Steve
*****
After I sent the email below to my ol' buddy, Buck, from my Lucent days, I decided to do this 'blog.
Although the email really was the beginning of my documenting my journey, I went back and started at the very beginning (the discovery post) and then worked my way forward.
I worked with Buck years ago at Lucent. We re-connected through email several years ago and have supported each through numerous personal (and cycling) issues via email over the years.
Some of this might be re-hashing some earlier content. I apologize for that. But it also breaks at least some new ground. And it's a kind of round-up of info up to that date as well.
*********
7/6/2010
Email to Buck
Hey,
I haven't been riding my bike much lately. July 2nd was the first
day I'd been in the saddle in over two weeks - doctor's orders following
surgery.
The picture is of me on Independence Day weekend 2010, BACK
IN THE SADDLE. The LIVESTRONG accessories are much more
meaningful to me than they were previously. I was recently
diagnosed with cancer. Of all the ways I WANTED to be like Lance,
this was certainly NOT one of them!
A while back I noticed a lump on my throat, between my Adam's
apple and my chin... one thing led to another, including surgery for
a biopsy of the growth. On June 23rd, 2010 my wife and I were
told that I have non-Hodgkins lymphoma.
As you can imagine, my life has changed, and quickly. I am in a
staging phase presently. They are assessing my condition. The
last test is a bone marrow biopsy. They'll take marrow from both
hips tomorrow. I have a consult with the oncologist on 7/13, at
which time he'll let me in on the firmed up plan of attack. I'm
hoping there are no additional surprises still waiting for me.
If all goes as he told me last week, I'm in for 6 initial chemotherapy
treatments, one every 3 weeks, followed by maintenance chemotherapy,
those treatments less frequent. He told me the total duration for chemo
should be about 24 months. Which would take me, roughly, to July 4th,
2012.
Every campaign worth pursuing has a catchy slogan. I've decided to
name my campaign "Independence Day 2012". My thinking is that I can
rally round a firm date (understanding that the date could slide
either way a little bit) rather than a vague, open ended target.
Also, I can tie in independence from the British with my independence
from cancer... admittedly, it's a little hokey, but I think it gives me
a clear target and a goal and it's not FOREVER, it's just 2 short years.
Years ago, one of my sports heroes, Walter Payton, was diagnosed with
a terminal illness. At the time, he said something I didn't understand.
He said that being given notice that your days were numbered, rather than
dying suddenly, was a gift. I drew a total blank on that at the time...
My doctor is optimistic and confident and I'm hanging my hat on that.
He has told me that my cancer is slow growing and that, depending on
your age when it strikes you, you might not even treat it. He
did advise me to treat my cancer and I do plan to win this fight. Either
way, it has changed my life.
In the least likely of places, revelations present themselves. I can't
even begin to tell you how many people, some of them unknown to me
previously, have offered me their love and support. Friends and family
members are slipping on LIVESTRONG bracelets. It has been an
unbelievably moving and humbling experience.
I now understand what Walter Payton meant. Had I fallen asleep and run
my truck into a highway support at speed, I never would have known how many
people care about me. Cancer has presented me with an unexpected gift.
The world looked a little different after I was first diagnosed. Now I'm
starting to get my mind around this. I am not bitter and I have no reason
to be. I've been very lucky to have lived this life. Many others have not
been as lucky as I've been. Every day is truly a gift and I intend to treat
each as such. And I'll ride when I can.
With assistance from my doctors, friends, and family, my plan is to
survive and get my life back on track.
And I'm grateful for the opportunity.
Steve
*****
PET Scan 7-1-2010
PET Scan 7-1-2010
This is a boring post but I want to document the procedure for y'all.
The diet for the PET scan was basically no carbs and no sugar for two days. The day before the scan I could drink black coffee or diet pop.
The day of the scan, nothing to drink but water and no food at all for 6 hours prior to the scan. Wheeeeeeeeeeeeeeeeee!
I am generally on a low carb diet ALL THE TIME. So you'd think this would not be hard for me.
I did fine except... I freaked myself out about not eating for 6 hours prior and so I ATE LIKE A PIG right up to the deadline. I was eating cheese and lots of summer sausage and drinking tons of water (I never drink water). About 2 hours after I stopped eating, I started getting a terrible headache. Not sure if that was because I didn't get any caffeine all day, or fallout from getting no carbs for 2 days. Then I started feeling like I might just swing by the Barf-O-Rama. I kept walking around outside, hoping that the fresh air would either cure me or at least expedite reverse peristalsis. No, and no.
So finally, I left work early and drove to the parking lot at the clinic. I called Julie and told her I planned on napping in my truck to see if I felt better after a little shut eye. (HEY! I'm over 50, I can take a nap, OK?) She agreed to call me 10 minutes before the appt. All I could think of was that if I got sick and couldn't get this done that day, I would have to go through the entire miserable experience AGAIN.
So, I actually did doze for a little bit. When I woke up I felt better.
Notes to myself for next time: Don't freak out and eat like a pig just before the deadline. See if you can schedule the FIRST APPT in the morning, because while you're sleeping you don't care that you're not eating. And from the time you wake up you'll probably only have an hour and a half to two hours to wait instead of 6 hours. But the most important thing: COWBOY UP, YOU BIG SISSY!
July 1st, 2010 The PET scan is not owned by the clinic. It visits the facility on certain days. It is actually housed in a converted semi-trailer which they plop down in the clinic parking lot.
First thing they did was take me in the room with the scanner and take a recent medical history. Then they told me that all the suffering I had just done diet-wise would allow them to get good pictures.
As best I recall, it was explained like this: Due to my recent carb deprivation, my body needed energy NOW. They would inject glucose (with a small amount of radioactive material) into my system. The normal cells would rapidly consume the glucose and then go "quiet". Then they would have me urinate in about 20 minutes to get rid of the excess glucose. What would show up on the scan would be cancer cells that were STILL consuming the (radioactive) glucose they required for their willy-nilly cell division antics.
They told me that they would want me to be still so that I didn't exercise muscles and thus make them grab more glucose and hold on to it longer. This would include my jaw muscles, so they asked me not to talk for 20 minutes (insert whatever joke here you'd like).
Then they took me back to the other end of their location and put me in a comfy recliner, where I was told, basically, to sit down and shut up. In a nice way, of course.
The tech inserted a port in a vein in my left arm with a butterfly needle. He then arranged himself behind a contraption that looked like it belonged in a '50s sci-fi movie. It was a large steel enclosure with an army gray hammer-tone finish. It had a viewing area with what appeared to be leaded glass, about 3" thick. Looking through the glass, he removed a steel cylinder from a vault. It appeared that he measured out a prescribed dosage into a stainless steel injection syringe, to which he attached a plastic tube. He replaced the original cylinder in the vault.
He then connected the prepared syringe to the port in my arm and 'shot me up'. I noticed he wore a film badge, to monitor his exposure to radiation.
As I sat in the chair, I read the notices on the walls. FOR RADIATION EMERGENCIES, CALL such and such, etc. I make myself a mental note - tonight after I go #1 in the toilet I'll flip off the light switch and see there's enough green light in the room to read a book. If there is, I'm calling everyone to come have a look.
Because, when will I ever get to see that again, honestly?
After waiting 20 minutes, they took me inside the clinic to empty my bladder. When they brought me back out, I shared the ride on the little elevator device with a fellow cancer patient who evidently was having his progress assessed: he was completely bald. "That's me in a short while" I said to myself. Cross "Head and Shoulders" off the grocery list. Not like that would be a big deal to a horseshoe-bald dude like me.
Then it was on to the actual scan.
They told me the scan would go from just below the top of my skull to about mid calf. They had me take my shirt off, put on a gown and drop trou to my ankles so that my zipper and button wouldn't show up on the scan. I laid down on the 'sled' for lack of a better word, which slides into and out of the scan 'donut'. The donut itself was maybe 3 feet or so deep. My head went in a v-shaped pillow so that it would remain stationary. They fastened a Velcro papoose-type device around my chest and arms, but not too tightly. My arms were at my sides. The tech asked me if I was claustrophobic and I told him that I was, but just a little bit. Looking at the tube I didn't think I'd have a problem.
The tech told me he'd start me out with my head in the tube and that every 3 minutes the sled would slide my head a little farther OUT OF THE TUBE so that the worst would be over with first. Then he went back to the controls and started the scan. The sled rocketed my head all the way THROUGH the tube and stopped about mid calf... (wait a minute!). A couple minutes later, the tech came in and told me he'd hit the wrong button. I'd finish with my head IN, instead of with my head OUT. Evidently once you start the program you can't stop it. He apologized, but I really didn't care. I just wanted to be done with it.
I must say, the techs were the nicest dudes. They had their routine down pat, and everything went off like clockwork. A very professional operation. All along the way they were very friendly and helpful, right down to apologizing for the needle stick.
A few minutes in, one tech asked what radio station I'd like to listen to. He piped in 670 the Score and I listened to the hosts debate whether or not the Bulls would win the LeBron James derby. That helped the time go by more quickly.
I must have been in the tube for about 45 minutes to an hour. About 3/4 of the way through I started to get sick to my stomach again. I just told myself that after getting this far, I was not going to ruin it by becoming ill. And I alternated between eyes open and shut. He told me it didn't make any difference. A couple times I opened my eyes and my head was in the tube. It was a little unnerving but I just closed my eyes and distracted myself with happy thoughts. And soon it was over.
I thanked them for taking such good care of me. And then I bolted.
I made a beeline for Panera where I inhaled a whole grain bagel followed by a chocolate chip bagel.
I'm sure they were delicious but I ate them so fast I couldn't say for sure.
This is a boring post but I want to document the procedure for y'all.
The diet for the PET scan was basically no carbs and no sugar for two days. The day before the scan I could drink black coffee or diet pop.
The day of the scan, nothing to drink but water and no food at all for 6 hours prior to the scan. Wheeeeeeeeeeeeeeeeee!
I am generally on a low carb diet ALL THE TIME. So you'd think this would not be hard for me.
I did fine except... I freaked myself out about not eating for 6 hours prior and so I ATE LIKE A PIG right up to the deadline. I was eating cheese and lots of summer sausage and drinking tons of water (I never drink water). About 2 hours after I stopped eating, I started getting a terrible headache. Not sure if that was because I didn't get any caffeine all day, or fallout from getting no carbs for 2 days. Then I started feeling like I might just swing by the Barf-O-Rama. I kept walking around outside, hoping that the fresh air would either cure me or at least expedite reverse peristalsis. No, and no.
So finally, I left work early and drove to the parking lot at the clinic. I called Julie and told her I planned on napping in my truck to see if I felt better after a little shut eye. (HEY! I'm over 50, I can take a nap, OK?) She agreed to call me 10 minutes before the appt. All I could think of was that if I got sick and couldn't get this done that day, I would have to go through the entire miserable experience AGAIN.
So, I actually did doze for a little bit. When I woke up I felt better.
Notes to myself for next time: Don't freak out and eat like a pig just before the deadline. See if you can schedule the FIRST APPT in the morning, because while you're sleeping you don't care that you're not eating. And from the time you wake up you'll probably only have an hour and a half to two hours to wait instead of 6 hours. But the most important thing: COWBOY UP, YOU BIG SISSY!
July 1st, 2010 The PET scan is not owned by the clinic. It visits the facility on certain days. It is actually housed in a converted semi-trailer which they plop down in the clinic parking lot.
First thing they did was take me in the room with the scanner and take a recent medical history. Then they told me that all the suffering I had just done diet-wise would allow them to get good pictures.
As best I recall, it was explained like this: Due to my recent carb deprivation, my body needed energy NOW. They would inject glucose (with a small amount of radioactive material) into my system. The normal cells would rapidly consume the glucose and then go "quiet". Then they would have me urinate in about 20 minutes to get rid of the excess glucose. What would show up on the scan would be cancer cells that were STILL consuming the (radioactive) glucose they required for their willy-nilly cell division antics.
They told me that they would want me to be still so that I didn't exercise muscles and thus make them grab more glucose and hold on to it longer. This would include my jaw muscles, so they asked me not to talk for 20 minutes (insert whatever joke here you'd like).
Then they took me back to the other end of their location and put me in a comfy recliner, where I was told, basically, to sit down and shut up. In a nice way, of course.
The tech inserted a port in a vein in my left arm with a butterfly needle. He then arranged himself behind a contraption that looked like it belonged in a '50s sci-fi movie. It was a large steel enclosure with an army gray hammer-tone finish. It had a viewing area with what appeared to be leaded glass, about 3" thick. Looking through the glass, he removed a steel cylinder from a vault. It appeared that he measured out a prescribed dosage into a stainless steel injection syringe, to which he attached a plastic tube. He replaced the original cylinder in the vault.
He then connected the prepared syringe to the port in my arm and 'shot me up'. I noticed he wore a film badge, to monitor his exposure to radiation.
As I sat in the chair, I read the notices on the walls. FOR RADIATION EMERGENCIES, CALL such and such, etc. I make myself a mental note - tonight after I go #1 in the toilet I'll flip off the light switch and see there's enough green light in the room to read a book. If there is, I'm calling everyone to come have a look.
Because, when will I ever get to see that again, honestly?
After waiting 20 minutes, they took me inside the clinic to empty my bladder. When they brought me back out, I shared the ride on the little elevator device with a fellow cancer patient who evidently was having his progress assessed: he was completely bald. "That's me in a short while" I said to myself. Cross "Head and Shoulders" off the grocery list. Not like that would be a big deal to a horseshoe-bald dude like me.
Then it was on to the actual scan.
They told me the scan would go from just below the top of my skull to about mid calf. They had me take my shirt off, put on a gown and drop trou to my ankles so that my zipper and button wouldn't show up on the scan. I laid down on the 'sled' for lack of a better word, which slides into and out of the scan 'donut'. The donut itself was maybe 3 feet or so deep. My head went in a v-shaped pillow so that it would remain stationary. They fastened a Velcro papoose-type device around my chest and arms, but not too tightly. My arms were at my sides. The tech asked me if I was claustrophobic and I told him that I was, but just a little bit. Looking at the tube I didn't think I'd have a problem.
The tech told me he'd start me out with my head in the tube and that every 3 minutes the sled would slide my head a little farther OUT OF THE TUBE so that the worst would be over with first. Then he went back to the controls and started the scan. The sled rocketed my head all the way THROUGH the tube and stopped about mid calf... (wait a minute!). A couple minutes later, the tech came in and told me he'd hit the wrong button. I'd finish with my head IN, instead of with my head OUT. Evidently once you start the program you can't stop it. He apologized, but I really didn't care. I just wanted to be done with it.
I must say, the techs were the nicest dudes. They had their routine down pat, and everything went off like clockwork. A very professional operation. All along the way they were very friendly and helpful, right down to apologizing for the needle stick.
A few minutes in, one tech asked what radio station I'd like to listen to. He piped in 670 the Score and I listened to the hosts debate whether or not the Bulls would win the LeBron James derby. That helped the time go by more quickly.
I must have been in the tube for about 45 minutes to an hour. About 3/4 of the way through I started to get sick to my stomach again. I just told myself that after getting this far, I was not going to ruin it by becoming ill. And I alternated between eyes open and shut. He told me it didn't make any difference. A couple times I opened my eyes and my head was in the tube. It was a little unnerving but I just closed my eyes and distracted myself with happy thoughts. And soon it was over.
I thanked them for taking such good care of me. And then I bolted.
I made a beeline for Panera where I inhaled a whole grain bagel followed by a chocolate chip bagel.
I'm sure they were delicious but I ate them so fast I couldn't say for sure.
Thursday, July 8, 2010
Oncologist visit I
Oncologist visit I
June 28, 2010 - One thing I have avoided doing is researching my illness. If there's anything I do know, it's that I'm not a doctor and I'm not qualified to sift through medical data and determine how or even if it applies to me, especially about so complex a subject. Getting myself all worked up about something I found on a website would only prove me to be so smart that I'm stupid. I do hear many stories from friends and acquaintances about people who have survived non Hodgkins lymphoma. Those stories are encouraging. I also know of at least one that ended badly.
Here's the pep talk I give myself: I will enter the fight with my eyes wide open, but make no mistake, I intend to win. I will maintain a positive attitude and will do whatever my doctor tells me gives me the best chance to succeed. My doctor will be my final authority on all things cancer.
Julie and I both like Dr. R. immediately. He's an articulate, precise, soft spoken Muslim guy with a dark, dark beard, the type you'd expect on an Amish dude. He goes through the whole explanation of my affliction, taking his time and asking if we have questions or need anything explained further. You get the feeling he'd spend all day with you if you needed him to. Fine quality in a doctor.
On examining me, he finds lumps under both arms and on both sides of my groin. He seems unconcerned about this, but now that Julie hears about it, my secret is no longer a secret.
Cut to the chase: he's confident AND optimistic about my outlook. My cancer is slow growing. It's also difficult to completely eradicate, because cell division occurs less frequently than with the faster growing variety and the chemotherapy kills the cancer when the cells divide.
The nature of my type of cancer is that if I were older, it might not even be treated, rather it would just be monitored for things like tumors closing off the airway or restricting blood flow, etc. He said I was "young" and that in my case, we should treat my cancer.
He said I needed a PET scan and a bone marrow biopsy for starters. After mentioning the bone marrow biopsy, he asks about my pain tolerance. Uh-oh.
I ask if finding cancer in my bone marrow would a) surprise him or b) significantly change my outlook or c) change the way he approaches treating me. No, no, and no.
Chemotherapy should go like this: 6 treatments with 3 weeks between each. Then, maintenance treatments, less frequently. When I finish I will have had 24 months of chemo (Ugh!).
Ideally my cancer will be completely eradicated, but if it isn't, hopefully its slow rate of advancement would either A) not require chemo again for quite some time or B) be slowed down so much that my inevitable heart attack would kill me first.... OK, what I really got out of what he said was that it might be slowed down so much that it would be pretty much a non factor over the remainder of my life. The heart attack thing I made up.
Chemotherapy tolerance is very difficult to judge, but he's hopeful it won't make me too terribly sick.
As he's escorting us back out to the waiting room, he says something like 'don't worry TOO much, we'll take care of this'.
We both leave this appt with our spirits lifted. But as always, with worries too - what if more cancer shows up, what if it's just a symptom of something else, what if ...yes, indeed, just like "your aunt Edna's ass"... And at the same time, I'm so happy I didn't get the "Get your affairs in order" speech.
We leave and make our phone calls. Some of the people on the other end of the line cry quietly with relief. I am astounded by this. I am relieved, also. It will take a while to acknowledge the irony of feeling relief when I still have 24 months of chemotherapy hanging over my head.
I think my sister Mary put it this way 'for bad news, it's pretty good news'.
High on Dr. R.'s Confidence and Optimism, I meet my sisters Sylvia and Deb at my mom's house that same night and deliver the news 'I've got cancer but it looks like I'll be OK'. My 85 year old mother is a little perplexed but takes the news quite well.
We proceed to let everyone in on what was previously a fairly tightly held secret.
June 28, 2010 - One thing I have avoided doing is researching my illness. If there's anything I do know, it's that I'm not a doctor and I'm not qualified to sift through medical data and determine how or even if it applies to me, especially about so complex a subject. Getting myself all worked up about something I found on a website would only prove me to be so smart that I'm stupid. I do hear many stories from friends and acquaintances about people who have survived non Hodgkins lymphoma. Those stories are encouraging. I also know of at least one that ended badly.
Here's the pep talk I give myself: I will enter the fight with my eyes wide open, but make no mistake, I intend to win. I will maintain a positive attitude and will do whatever my doctor tells me gives me the best chance to succeed. My doctor will be my final authority on all things cancer.
Julie and I both like Dr. R. immediately. He's an articulate, precise, soft spoken Muslim guy with a dark, dark beard, the type you'd expect on an Amish dude. He goes through the whole explanation of my affliction, taking his time and asking if we have questions or need anything explained further. You get the feeling he'd spend all day with you if you needed him to. Fine quality in a doctor.
On examining me, he finds lumps under both arms and on both sides of my groin. He seems unconcerned about this, but now that Julie hears about it, my secret is no longer a secret.
Cut to the chase: he's confident AND optimistic about my outlook. My cancer is slow growing. It's also difficult to completely eradicate, because cell division occurs less frequently than with the faster growing variety and the chemotherapy kills the cancer when the cells divide.
The nature of my type of cancer is that if I were older, it might not even be treated, rather it would just be monitored for things like tumors closing off the airway or restricting blood flow, etc. He said I was "young" and that in my case, we should treat my cancer.
He said I needed a PET scan and a bone marrow biopsy for starters. After mentioning the bone marrow biopsy, he asks about my pain tolerance. Uh-oh.
I ask if finding cancer in my bone marrow would a) surprise him or b) significantly change my outlook or c) change the way he approaches treating me. No, no, and no.
Chemotherapy should go like this: 6 treatments with 3 weeks between each. Then, maintenance treatments, less frequently. When I finish I will have had 24 months of chemo (Ugh!).
Ideally my cancer will be completely eradicated, but if it isn't, hopefully its slow rate of advancement would either A) not require chemo again for quite some time or B) be slowed down so much that my inevitable heart attack would kill me first.... OK, what I really got out of what he said was that it might be slowed down so much that it would be pretty much a non factor over the remainder of my life. The heart attack thing I made up.
Chemotherapy tolerance is very difficult to judge, but he's hopeful it won't make me too terribly sick.
As he's escorting us back out to the waiting room, he says something like 'don't worry TOO much, we'll take care of this'.
We both leave this appt with our spirits lifted. But as always, with worries too - what if more cancer shows up, what if it's just a symptom of something else, what if ...yes, indeed, just like "your aunt Edna's ass"... And at the same time, I'm so happy I didn't get the "Get your affairs in order" speech.
We leave and make our phone calls. Some of the people on the other end of the line cry quietly with relief. I am astounded by this. I am relieved, also. It will take a while to acknowledge the irony of feeling relief when I still have 24 months of chemotherapy hanging over my head.
I think my sister Mary put it this way 'for bad news, it's pretty good news'.
High on Dr. R.'s Confidence and Optimism, I meet my sisters Sylvia and Deb at my mom's house that same night and deliver the news 'I've got cancer but it looks like I'll be OK'. My 85 year old mother is a little perplexed but takes the news quite well.
We proceed to let everyone in on what was previously a fairly tightly held secret.
Post Diagnosis Pre Oncologist and "Aunt Edna"
Post Diagnosis Pre Oncologist
The morning after I get my diagnosis, my manager, Derek comes into my office and closes the door for a private talk. I get him all caught up on what I know and what I don't know. Derek spends a lot of time with me over the course of that day. He reassures me that I need to concentrate on getting well and that our work team and his family (the owners) will see me through this. He was terrific and I can't even begin to tell you how much this means to me.
Later, I speak to Derek's brother, Darren, and their dad, Chuck. They couldn't have been any nicer or more supportive, honestly. I am very lucky to have them on my side. It takes a huge burden off of me.
One night I have a dream. A character in my dream seems familiar, but I can't determine who he is. Finally, I realize it's my father, as a very young man. My dad died in 2003. Does this mean I'll be seeing him again soon or just that my fears are running wild and spilling over into my subconscious? I pretty much don't believe in my ability to see or predict the future, so I'll go with the second option.
For me a lot of the tension was relieved after the lymphoma diagnosis but now it's building again with the upcoming oncologist visit. Will he tell me to get my affairs in order because I only have 6 months to live? Scenarios like that play continuously in my head.
And, it's occurring to me that having cancer is really about moving from one worry to the next. Worry about a lump on your throat. Worry about the surgery. Worry about the biopsy and diagnosis. Worry that your particular brand of cancer may not be treatable. Worry that you'll die. Worry what will happen to your family. And on and on.
It reminds me of a line from a great movie, "Parenthood". Two characters are discussing the never ending challenges of parenting. Jason Robards says "It never ends. It's like your aunt Edna's ass, it goes on forever and it's just as frightening."
Yeah. Like that.
The morning after I get my diagnosis, my manager, Derek comes into my office and closes the door for a private talk. I get him all caught up on what I know and what I don't know. Derek spends a lot of time with me over the course of that day. He reassures me that I need to concentrate on getting well and that our work team and his family (the owners) will see me through this. He was terrific and I can't even begin to tell you how much this means to me.
Later, I speak to Derek's brother, Darren, and their dad, Chuck. They couldn't have been any nicer or more supportive, honestly. I am very lucky to have them on my side. It takes a huge burden off of me.
One night I have a dream. A character in my dream seems familiar, but I can't determine who he is. Finally, I realize it's my father, as a very young man. My dad died in 2003. Does this mean I'll be seeing him again soon or just that my fears are running wild and spilling over into my subconscious? I pretty much don't believe in my ability to see or predict the future, so I'll go with the second option.
For me a lot of the tension was relieved after the lymphoma diagnosis but now it's building again with the upcoming oncologist visit. Will he tell me to get my affairs in order because I only have 6 months to live? Scenarios like that play continuously in my head.
And, it's occurring to me that having cancer is really about moving from one worry to the next. Worry about a lump on your throat. Worry about the surgery. Worry about the biopsy and diagnosis. Worry that your particular brand of cancer may not be treatable. Worry that you'll die. Worry what will happen to your family. And on and on.
It reminds me of a line from a great movie, "Parenthood". Two characters are discussing the never ending challenges of parenting. Jason Robards says "It never ends. It's like your aunt Edna's ass, it goes on forever and it's just as frightening."
Yeah. Like that.
Diagnosis
Diagnosis
June 23, 2010
My wife works where I do, part time. Some weeks she works 3 days, some 1, some not at all. Since I have my diagnosis appt today, she stays at work and she goes with me .
Sister in law Sherri, citing privileges as my "Work Wife" goes with too. God bless her, she wants to come to the clinic with us. She feels like she has an "in" with the E, N, and T Dr. as he'd removed a blemish for her sometime during the Eisenhower administration, I think it was (just kidding. It was LBJ). Seriously, she wants to be there for her sister, and for me, too.
Julie and I go in for the bad news. I know it's bad news, no doubt about it. Sherri waits in the reception area.
The nurse removes my stitches and says the doctor will be in to talk to me. My throat is dry and the clock ticks away like a 2 ton sledgehammer. Then finally the doc walks in and examines my incision....come on, let me have it. Then he says "you have lymphoma".
After that, his lips are moving but I'm really not hearing anything. I ask him to repeat something. The doctor and I notice Julie is crying, and we try to reassure her. I do hear "non Hodgkins" and "treatable" but not much else. I tell Julie to go out and talk to Sherri. I thank the Dr. and wait to talk to his nurse to set up my appointment with the oncologist.
There's no denying one thing - I feel strangely relieved! I have a diagnosis and now I can move forward.
When I come out, Julie and Sherri are doing their best to bear up, but they are both obviously very upset. For me, after the initial blow, which I expected, I've rebounded somewhat and at this point I'm really just numb. We are standing under the canopy where cars drop people off and we're experiencing a rainstorm featuring the_mother of all thunder and lightning shows.
The whole afternoon is right out of a Hollywood script. Sherri hugs me and then we all get in our cars (we drove to work separately) and each make our phone calls. 20+ miles to home. My sister Marta convinces me not to tell my mom until after I talk to the oncologist. Her argument is that I won't even really know what the prognosis is and so rather than worry my mom, it would be better to wait.
As we drive home, the weather gets so bad we have to pull off the road. What a bleak day, through and through. When we finally get home, my niece Jori has our kids and her 3 kids (Jack, Hallie, and Cade) in the basement because there were tornado warnings.
Jori is upset and Hallie wants to know why. Jori won't tell her why and this upsets Hallie. Austin is playing with Jack but Austin, sensing trouble, is tense. Cade tells Julie she looks like she has pink eye. My nephew Bob (Jori's husband) comes over. We order out.
After Jori and her kids leave and Julie and our kids wander off to bed, Bob and I sit and watch a TIVO'd reality show, Deadliest Catch, which features Captain Phil's stroke (he subsequently dies from this, we already know). Discussing my cancer, Bob assures me 'we'll get through this'. Bob and Jori are always there for us.
As he prepares to leave, we exchange man hugs. I mention to Bob that what I'm dealing with is nothing new to him. He had a malignant skin growth removed recently and lost his mother at a young age to cancer. Bob goes home.
Our house is dark and silent.
June 23, 2010
My wife works where I do, part time. Some weeks she works 3 days, some 1, some not at all. Since I have my diagnosis appt today, she stays at work and she goes with me .
Sister in law Sherri, citing privileges as my "Work Wife" goes with too. God bless her, she wants to come to the clinic with us. She feels like she has an "in" with the E, N, and T Dr. as he'd removed a blemish for her sometime during the Eisenhower administration, I think it was (just kidding. It was LBJ). Seriously, she wants to be there for her sister, and for me, too.
Julie and I go in for the bad news. I know it's bad news, no doubt about it. Sherri waits in the reception area.
The nurse removes my stitches and says the doctor will be in to talk to me. My throat is dry and the clock ticks away like a 2 ton sledgehammer. Then finally the doc walks in and examines my incision....come on, let me have it. Then he says "you have lymphoma".
After that, his lips are moving but I'm really not hearing anything. I ask him to repeat something. The doctor and I notice Julie is crying, and we try to reassure her. I do hear "non Hodgkins" and "treatable" but not much else. I tell Julie to go out and talk to Sherri. I thank the Dr. and wait to talk to his nurse to set up my appointment with the oncologist.
There's no denying one thing - I feel strangely relieved! I have a diagnosis and now I can move forward.
When I come out, Julie and Sherri are doing their best to bear up, but they are both obviously very upset. For me, after the initial blow, which I expected, I've rebounded somewhat and at this point I'm really just numb. We are standing under the canopy where cars drop people off and we're experiencing a rainstorm featuring the_mother of all thunder and lightning shows.
The whole afternoon is right out of a Hollywood script. Sherri hugs me and then we all get in our cars (we drove to work separately) and each make our phone calls. 20+ miles to home. My sister Marta convinces me not to tell my mom until after I talk to the oncologist. Her argument is that I won't even really know what the prognosis is and so rather than worry my mom, it would be better to wait.
As we drive home, the weather gets so bad we have to pull off the road. What a bleak day, through and through. When we finally get home, my niece Jori has our kids and her 3 kids (Jack, Hallie, and Cade) in the basement because there were tornado warnings.
Jori is upset and Hallie wants to know why. Jori won't tell her why and this upsets Hallie. Austin is playing with Jack but Austin, sensing trouble, is tense. Cade tells Julie she looks like she has pink eye. My nephew Bob (Jori's husband) comes over. We order out.
After Jori and her kids leave and Julie and our kids wander off to bed, Bob and I sit and watch a TIVO'd reality show, Deadliest Catch, which features Captain Phil's stroke (he subsequently dies from this, we already know). Discussing my cancer, Bob assures me 'we'll get through this'. Bob and Jori are always there for us.
As he prepares to leave, we exchange man hugs. I mention to Bob that what I'm dealing with is nothing new to him. He had a malignant skin growth removed recently and lost his mother at a young age to cancer. Bob goes home.
Our house is dark and silent.
Wednesday, July 7, 2010
Surgery
Surgery
June 16th: All day it felt like someone was sitting on my chest, I was SO tense. I knew I wouldn't be able to ride my bike for a while, so after work I went for a ride, to Millington the_back_way with a couple detours, and back home, I flew the whole way. 25 miles and I felt great. The minute I got on the road, the person sitting on my chest was gone... I remember thinking 'how can I be sick, I FEEL GREAT?'.
June 17, 2010 5:30 AM By now, this ordeal just feels soooo freakin' creepy. As Julie and I walk through the doors into the hospital, I can't help but blurt out "into the rabbit hole..." It feels like we're entering a vortex.
Three of my best girlfriends are there for me. My beloved missus (Julie), and my pal and sister in law, Sherri are there pre-op. And after surgery, my little niece Jori was there.
Another sister in law (Laurie) planned to surprise me by showing up, God bless her. She doesn't like these kinds of things. But a SNAFU (ours) has her at the wrong hospital, clear across town. But it's the thought that counts, and I truly appreciate it.
The thing is that only a couple people on my side, both living out of state, even know what's going on with me. I don't want them to know until I know... something.
The prep flys by. The anesthesiologist is a nice little Asian lady. I make it clear to her that I don't want non medical types around me before I'm fully "with it". I tell her I don't want my family to see me when I'm a blithering idiot... well, maybe I shouldn't have put it that way, but she knew what I meant. We'll see how well this plays out.
Soon I'm being wheeled into surgery, giving the goodbyes to Julie and Sherri. I make the motorboat noise, flipping my finger over my lips, for their amusement, but mostly because I enjoy playing the village idiot, a guy that would whistle while being led to the gallows.
After surgery, I'm told, the lunacy continues, with me making a comment about the nurse refusing to pull my thumb, and me telling any one who'll listen that Julie and Sherri are High Maintenance but Jori's SUPERB! I have a HUGE bandage on my throat but really not much pain. People tell me later that I talked to them on the phone on the way home and made no sense at all. But wait, that's me when I'm coherent, too. I only have a vague recollection of this.
After we get home, I make Julie take my road bike down from the hook and I get on it for a photo op. She sends the picture out (huge bandage unmistakable) with the caption "only rode 10 miles today" or something like that. This is me trying to A) look invincible and B) play the village idiot at the same time (Bonus!).
Julie tells me the doctor's post surgery comments were along the lines of 'we'll wait for the biopsy and hope for good news'.
For quite a while now my son Austin has been "picking up on" things. Austin is 23 and has Downs Syndrome. He is very perceptive. We have made it a point not to discuss my situation around him, except for what we have to tell him. And now that I have a big bandage, he's really worried.
At one point I hear Austin crying in his room. He says "I worry you". And "I cry in there". Austin remembers when his grandfathers died and ever since that time, he associates doctors and medical procedures with death. It's impossible to put him at ease. He wants you to take a pill and be cured. As this adventure goes on and on, he worries more and more.
This breaks my heart.
All of this is the prelude, to THE DIAGNOSIS, and it's a real drag. Home from work Thursday / Friday, then the whole weekend to WAIT. The bandage comes off Friday morning, and my neck is a mess. An inch and a half scar, and tons of swelling. But it really only bothers me when I lift my chin. Although I was given a scrip for vicodin (sp?), I am not taking them as they're really not needed. But then my sister Marta, who's a nurse, suggests that I take them at night as they'll help me sleep. So I do. And they do.
I call for my follow up appt and she gives me a SATURDAY appointment. OK, since they told me they'd probably know the diagnosis in 48 hours, why don't I just wait 8 FREAKIN' DAYS? I'm sure they'll move that up, the waiting IS the hardest part, Tom Petty was right.
On Monday, the 21st, I call the nurse and she tells me she should have the results any time now, and she will call and give me the news... she will? Wow, I just knew I'd have to go in to talk to the Doctor. Then, on the 22nd she calls and says I'm to come in the 23rd at 4:45 and the doctor will give me the results.
Uh-oh. It's cancer, now I know it because she changed from the casual, 'oh yeah, I'll tell you' to the stiff and formal 'come in and see the doctor and he'll go over the results with you. I am a cold and unfeeling robot.' (exaggeration employed here for comic effect, the nurse was just doing her job and was VERY nice).
Even now, I've still got a lot of swelling and am referring to my lumpectomy, or whatever you call it, as my "goiter", which makes Julie wince and Sherri laugh.
June 16th: All day it felt like someone was sitting on my chest, I was SO tense. I knew I wouldn't be able to ride my bike for a while, so after work I went for a ride, to Millington the_back_way with a couple detours, and back home, I flew the whole way. 25 miles and I felt great. The minute I got on the road, the person sitting on my chest was gone... I remember thinking 'how can I be sick, I FEEL GREAT?'.
June 17, 2010 5:30 AM By now, this ordeal just feels soooo freakin' creepy. As Julie and I walk through the doors into the hospital, I can't help but blurt out "into the rabbit hole..." It feels like we're entering a vortex.
Three of my best girlfriends are there for me. My beloved missus (Julie), and my pal and sister in law, Sherri are there pre-op. And after surgery, my little niece Jori was there.
Another sister in law (Laurie) planned to surprise me by showing up, God bless her. She doesn't like these kinds of things. But a SNAFU (ours) has her at the wrong hospital, clear across town. But it's the thought that counts, and I truly appreciate it.
The thing is that only a couple people on my side, both living out of state, even know what's going on with me. I don't want them to know until I know... something.
The prep flys by. The anesthesiologist is a nice little Asian lady. I make it clear to her that I don't want non medical types around me before I'm fully "with it". I tell her I don't want my family to see me when I'm a blithering idiot... well, maybe I shouldn't have put it that way, but she knew what I meant. We'll see how well this plays out.
Soon I'm being wheeled into surgery, giving the goodbyes to Julie and Sherri. I make the motorboat noise, flipping my finger over my lips, for their amusement, but mostly because I enjoy playing the village idiot, a guy that would whistle while being led to the gallows.
After surgery, I'm told, the lunacy continues, with me making a comment about the nurse refusing to pull my thumb, and me telling any one who'll listen that Julie and Sherri are High Maintenance but Jori's SUPERB! I have a HUGE bandage on my throat but really not much pain. People tell me later that I talked to them on the phone on the way home and made no sense at all. But wait, that's me when I'm coherent, too. I only have a vague recollection of this.
After we get home, I make Julie take my road bike down from the hook and I get on it for a photo op. She sends the picture out (huge bandage unmistakable) with the caption "only rode 10 miles today" or something like that. This is me trying to A) look invincible and B) play the village idiot at the same time (Bonus!).
Julie tells me the doctor's post surgery comments were along the lines of 'we'll wait for the biopsy and hope for good news'.
For quite a while now my son Austin has been "picking up on" things. Austin is 23 and has Downs Syndrome. He is very perceptive. We have made it a point not to discuss my situation around him, except for what we have to tell him. And now that I have a big bandage, he's really worried.
At one point I hear Austin crying in his room. He says "I worry you". And "I cry in there". Austin remembers when his grandfathers died and ever since that time, he associates doctors and medical procedures with death. It's impossible to put him at ease. He wants you to take a pill and be cured. As this adventure goes on and on, he worries more and more.
This breaks my heart.
All of this is the prelude, to THE DIAGNOSIS, and it's a real drag. Home from work Thursday / Friday, then the whole weekend to WAIT. The bandage comes off Friday morning, and my neck is a mess. An inch and a half scar, and tons of swelling. But it really only bothers me when I lift my chin. Although I was given a scrip for vicodin (sp?), I am not taking them as they're really not needed. But then my sister Marta, who's a nurse, suggests that I take them at night as they'll help me sleep. So I do. And they do.
I call for my follow up appt and she gives me a SATURDAY appointment. OK, since they told me they'd probably know the diagnosis in 48 hours, why don't I just wait 8 FREAKIN' DAYS? I'm sure they'll move that up, the waiting IS the hardest part, Tom Petty was right.
On Monday, the 21st, I call the nurse and she tells me she should have the results any time now, and she will call and give me the news... she will? Wow, I just knew I'd have to go in to talk to the Doctor. Then, on the 22nd she calls and says I'm to come in the 23rd at 4:45 and the doctor will give me the results.
Uh-oh. It's cancer, now I know it because she changed from the casual, 'oh yeah, I'll tell you' to the stiff and formal 'come in and see the doctor and he'll go over the results with you. I am a cold and unfeeling robot.' (exaggeration employed here for comic effect, the nurse was just doing her job and was VERY nice).
Even now, I've still got a lot of swelling and am referring to my lumpectomy, or whatever you call it, as my "goiter", which makes Julie wince and Sherri laugh.
primary care visit II pre-op exam
primary care visit II pre-op exam
June 15, 2010 - I go by myself. On this visit the world stops turning for a bit. While examining me, the doctor finds a lump under my left armpit and another one in my left groin. Oops... I've been hearing that it was really GOOD that none had turned up there, now THAT last little bit of hope is gone, too. At this point, there's no need to tell anyone (including the missus) as it won't change anything, anyway.
I had an exam not too far back, maybe 18 or 24 months ago. Nothing was detected at that time, so I can't imagine that I've had this very long.
The Doctor tells me that what I have could be a lot of different things, including dormant tuberculosis. But this visit just has a very black feel to it. The doctor confides in me that he himself has had cancer, and that he survived it. Again, he asks me how I FEEL. Why do they expect me to complain that I feel like horse hockey? I FEEL GREAT, honest to God. Only now, I am not sleeping at all (straight up, I'm not afraid of BEING DEAD, what I'm afraid of is being conscious when I transition between BEING ALIVE and BEING DEAD, I just think it may be a tad bit uncomfortable).
He suggests benadryl up until surgery, at which time if I need something else,
he'll be glad to prescribe it. We buy some but I don't take it. And I don't sleep. I worry about what would become of Julie, Austin, and Tessa. And hope that I'm being overly pessimistic.
Aside here: I know that I won't live forever. Life itself is a big crapshoot. As I told my primary care doctor on this visit, I don't want to see it coming, I don't want it to hurt, and I don't want it to take too long. Perfect ending is to die in my sleep when it's my time. Not everyone is so lucky, but that's what I was hoping for, nonetheless.
June 15, 2010 - I go by myself. On this visit the world stops turning for a bit. While examining me, the doctor finds a lump under my left armpit and another one in my left groin. Oops... I've been hearing that it was really GOOD that none had turned up there, now THAT last little bit of hope is gone, too. At this point, there's no need to tell anyone (including the missus) as it won't change anything, anyway.
I had an exam not too far back, maybe 18 or 24 months ago. Nothing was detected at that time, so I can't imagine that I've had this very long.
The Doctor tells me that what I have could be a lot of different things, including dormant tuberculosis. But this visit just has a very black feel to it. The doctor confides in me that he himself has had cancer, and that he survived it. Again, he asks me how I FEEL. Why do they expect me to complain that I feel like horse hockey? I FEEL GREAT, honest to God. Only now, I am not sleeping at all (straight up, I'm not afraid of BEING DEAD, what I'm afraid of is being conscious when I transition between BEING ALIVE and BEING DEAD, I just think it may be a tad bit uncomfortable).
He suggests benadryl up until surgery, at which time if I need something else,
he'll be glad to prescribe it. We buy some but I don't take it. And I don't sleep. I worry about what would become of Julie, Austin, and Tessa. And hope that I'm being overly pessimistic.
Aside here: I know that I won't live forever. Life itself is a big crapshoot. As I told my primary care doctor on this visit, I don't want to see it coming, I don't want it to hurt, and I don't want it to take too long. Perfect ending is to die in my sleep when it's my time. Not everyone is so lucky, but that's what I was hoping for, nonetheless.
E N and T visit II
E N and T visit II
June 7, 2010 My wife accompanies me to this appt. After exchanging pleasantries, the Dr. says that the CT scan confirmed what he thought, that I definitely did have swollen lymph nodes, both sides of my neck ... "what are they, doc?".
He tells me we'll need to biopsy one of "them" to find out. The one on my throat is the best candidate. Needle will probably not get enough tissue, surgical removal would be best. Let's do it, I said. I just want to know wt_ I have.
Dr. says I need some pre-op tests and a pre-op exam, so it's back to the primary care dude.
Up to now I've been limiting who knows what but feel obliged to at least get my mom in the loop.
At my sister Marta's suggestion, Julie and I very casually bring it up to my mom that I'm having a growth removed and manage to totally downplay it. It comes across to my mom as a non_event.
Mission accomplished.
June 7, 2010 My wife accompanies me to this appt. After exchanging pleasantries, the Dr. says that the CT scan confirmed what he thought, that I definitely did have swollen lymph nodes, both sides of my neck ... "what are they, doc?".
He tells me we'll need to biopsy one of "them" to find out. The one on my throat is the best candidate. Needle will probably not get enough tissue, surgical removal would be best. Let's do it, I said. I just want to know wt_ I have.
Dr. says I need some pre-op tests and a pre-op exam, so it's back to the primary care dude.
Up to now I've been limiting who knows what but feel obliged to at least get my mom in the loop.
At my sister Marta's suggestion, Julie and I very casually bring it up to my mom that I'm having a growth removed and manage to totally downplay it. It comes across to my mom as a non_event.
Mission accomplished.
CT Scan
CT Scan
June 1, 2010 My favorite part of the CT scan was where the nurse told me "I'm going to inject you with some dye and you'll likely have this huge heat rush, detect a funny taste in your mouth... oh, and you'll probably feel like you're wetting your pants, but you're not..... well, probably not, anyway."
Oh, giddy me, I can't wait! Anyway, I got all BUT the funny taste. The warm rush was spectacular. And spectacularly uncomfortable. It took a little while to work its way from my head to my toes, but it didn't hurt, exactly. And, check my pants, Mommy, ALL DRY! This was really not bad at all. I actually dozed off for a bit. So now I can wait for the consult with the E, N, and T.
And he can tell me what I have. Already!
June 1, 2010 My favorite part of the CT scan was where the nurse told me "I'm going to inject you with some dye and you'll likely have this huge heat rush, detect a funny taste in your mouth... oh, and you'll probably feel like you're wetting your pants, but you're not..... well, probably not, anyway."
Oh, giddy me, I can't wait! Anyway, I got all BUT the funny taste. The warm rush was spectacular. And spectacularly uncomfortable. It took a little while to work its way from my head to my toes, but it didn't hurt, exactly. And, check my pants, Mommy, ALL DRY! This was really not bad at all. I actually dozed off for a bit. So now I can wait for the consult with the E, N, and T.
And he can tell me what I have. Already!
ear nose and throat dr.visit I
ear nose and throat dr. visit I
May 2010 The E, N, and T doctor concurred with my primary and said I had several swollen nodes. I asked if he'd do a biopsy. He said he'd need a CT scan done so they could better assess the situation. He said the cause could be a whole laundry list of things, some not really serious and some... well, I got the idea.
We scheduled the scan. He asked me how I FELT. They seem to expect me to say that I feel really bad, but I don't. How can I have this "problem" and feel GREAT?
I have a feeling I'm about to find out.
May 2010 The E, N, and T doctor concurred with my primary and said I had several swollen nodes. I asked if he'd do a biopsy. He said he'd need a CT scan done so they could better assess the situation. He said the cause could be a whole laundry list of things, some not really serious and some... well, I got the idea.
We scheduled the scan. He asked me how I FELT. They seem to expect me to say that I feel really bad, but I don't. How can I have this "problem" and feel GREAT?
I have a feeling I'm about to find out.
primary care initial visit
primary care visit
May 2010 - the nurse took my vitals and asked how long I'd noticed the lump on my throat. I wasn't really sure so I think I said several weeks. When the Dr. examined me, he asked me how I felt. I answered truthfully, I FEEL GREAT.
He told me it was a swollen lymph gland or node. It could mean a lot of things, but more tests would be required to definitively say. But while ONE swollen lymph gland was no big deal, BANKS of swollen lymph glands on both sides of my neck (which he detects while examining me), were definitely a cause for concern. He ordered a lung xray and blood tests and gave me a referral to an ear, nose, and throat Dr. who will likely do a needle biopsy on one of the nodes to find out what we're dealing with.
OK, now I'm concerned, too.
May 2010 - the nurse took my vitals and asked how long I'd noticed the lump on my throat. I wasn't really sure so I think I said several weeks. When the Dr. examined me, he asked me how I felt. I answered truthfully, I FEEL GREAT.
He told me it was a swollen lymph gland or node. It could mean a lot of things, but more tests would be required to definitively say. But while ONE swollen lymph gland was no big deal, BANKS of swollen lymph glands on both sides of my neck (which he detects while examining me), were definitely a cause for concern. He ordered a lung xray and blood tests and gave me a referral to an ear, nose, and throat Dr. who will likely do a needle biopsy on one of the nodes to find out what we're dealing with.
OK, now I'm concerned, too.
discovery
April / May 2010 time frame - One day while shaving, I noticed a lump ON my throat (as opposed to IN my throat.... HEY, my lump's inside out!). Hmmm. I'll just leave it, it will probably go away, I thought. A week passed and it didn't go away. Something's wrong here... I'll make an appointment. This lump was large enough that I had to be consciously GOING AROUND IT when shaving. Yeah, like that. I didn't get around to making the appt immediately.
Then, my wife Julie gave me a a haircut and shaved the back of my neck. My sister in law Sherri, whom I work with, commented that I had a prominent lump on the BACK of my neck. Concerned, I went online that day and set up a doctor's appointment.
Then, my wife Julie gave me a a haircut and shaved the back of my neck. My sister in law Sherri, whom I work with, commented that I had a prominent lump on the BACK of my neck. Concerned, I went online that day and set up a doctor's appointment.
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