It’s been another while since I’ve posted. I went for CT scans at the NCI on October 17th and they say all is clear except the rib which is still healing in their words.
The rib is still sore and has a noticeable lump so I think it will need more treatment as we move forward but we will see.
My youngest daughter went into the Air Force on October 30th and got sick from the immunizations or something else and now they are going to discharge her. She hasn’t even seen a doctor or received any treatment other than ibuprofen. She is so discouraged that now she can’t wait to get out. But I want her treated first. Anyway that my latest stress.
Monday, November 12, 2007
Sunday, September 2, 2007
Rock of Ages, The Rib and turning 45
It’s been a while since I posted so I have some catching up to do. I haven’t been to a rock concert in many years… on August 25th, My wife got us tickets to a concert called “Rock of ages” that had Foreigner, Styx and Def Leppard as the headliner. Unless you are in my age group you probably don’t know who or what I’m talking about but they are late 70’s and 80’s rockbands. Foreigner only had one original band member, Mick Jones, but they sounded great. The drummer is John Bonham Jr., the son of John Bonham from Led Zeppelin and they did break out into a Zeppelin tune. Styx was great and Def Leppard rocked the place down. I guess the big story is, not being on any cancer drugs, I was free to have a beer or three and really had a great time. It was a party!
On August 28th I left for the NCI to have the RFA on my right rib. I went alone mostly because it was supposed to be pretty much an outpatient procedure and really my wife just doesn’t have the time off work that I have and we need the moola.
It was a bigger deal than they let on…they put me under general anesthesia and RFA’d the rib tumor. I don’t know how big it is but it was around the rib so the Dr. had to go into three different holes at different angles to get access. He was confident he “baked” all of it but we really won’t be able to tell until subsequent scans are done in a couple of months. I guess this is a painless procedure if done on an internal organ but let me tell you on a bone near the surface it is painful but manageable.
I was released the morning of the 30th, My birthday. I went to the airport early and tried to catch an earlier flight but no luck being a holiday weekend. On the flight back some storms moved into Atlanta and we diverted to Macon, Ga for fuel and sat until the storms cleared. I finally got home after 9pm that night. Very, Very sore from sitting.
I turned 45, I was 42 when diagnosed with RCC in December of 2004. All I can say is I’ve made it another year reacting to the pot shots this cancer keeps taking at me.
On August 28th I left for the NCI to have the RFA on my right rib. I went alone mostly because it was supposed to be pretty much an outpatient procedure and really my wife just doesn’t have the time off work that I have and we need the moola.
It was a bigger deal than they let on…they put me under general anesthesia and RFA’d the rib tumor. I don’t know how big it is but it was around the rib so the Dr. had to go into three different holes at different angles to get access. He was confident he “baked” all of it but we really won’t be able to tell until subsequent scans are done in a couple of months. I guess this is a painless procedure if done on an internal organ but let me tell you on a bone near the surface it is painful but manageable.
I was released the morning of the 30th, My birthday. I went to the airport early and tried to catch an earlier flight but no luck being a holiday weekend. On the flight back some storms moved into Atlanta and we diverted to Macon, Ga for fuel and sat until the storms cleared. I finally got home after 9pm that night. Very, Very sore from sitting.
I turned 45, I was 42 when diagnosed with RCC in December of 2004. All I can say is I’ve made it another year reacting to the pot shots this cancer keeps taking at me.
Saturday, August 11, 2007
The Rib
OK I made my trip to the NCI and had the CT scans done. I could not take the contrast because during my last visit I had a small allergic reaction and they said because I hadn’t been premedicated this time they would not give it to me. So they did scans without it this time. I was a bit disappointed but they assured me they would be able to see what they needed to see. I also asked them to take a good look at the ribs on my right side.
I met with Dr. Bates and her boss Dr. Fojo and team after the scans and they confirmed that I had the rib metastasis…but the good news is that’s all they detected. I was very comfortable with that news I guess because I already knew about the rib.
The NCI technically can only treat while participating in a trial and Dr. Fojo started asking who I saw at home and I really don’t see anyone as I was travelling to Houston. He was mentioning radiation treatments but that would take several sessions and then brought up the RFA (Radio Frequency Ablation), it would be done in one session and could be curative in that area. He said he would arrange to have it done there by Dr. Brad Woods, the NCI’s top dog in RFA. He also took part in my surgery in June for the back tumor, so we’ve met. I have to wait for him to return from vacation but I expect to be up there towards the end of the month to get this thing taken care of.
I fully expected to be discussing IL2 during that visit but they said not yet. They take each situation as it presents itself and figure out what is best at that time. I’ll go along with that….for now.
So, the anxiety level is back down and I’m just waiting for a call to schedule the procedure. They will do full scans prior just to make sure that’s all I have again and hopefully I’ll get one more set of scans before they refer me back to my regular doctor.
My wife got her mamogram report, it was nothing, some sort of shadow or benign spot that’s been there in prior scans, so all is good there as well.
The battle continues…winning one skirmish at a time.
I met with Dr. Bates and her boss Dr. Fojo and team after the scans and they confirmed that I had the rib metastasis…but the good news is that’s all they detected. I was very comfortable with that news I guess because I already knew about the rib.
The NCI technically can only treat while participating in a trial and Dr. Fojo started asking who I saw at home and I really don’t see anyone as I was travelling to Houston. He was mentioning radiation treatments but that would take several sessions and then brought up the RFA (Radio Frequency Ablation), it would be done in one session and could be curative in that area. He said he would arrange to have it done there by Dr. Brad Woods, the NCI’s top dog in RFA. He also took part in my surgery in June for the back tumor, so we’ve met. I have to wait for him to return from vacation but I expect to be up there towards the end of the month to get this thing taken care of.
I fully expected to be discussing IL2 during that visit but they said not yet. They take each situation as it presents itself and figure out what is best at that time. I’ll go along with that….for now.
So, the anxiety level is back down and I’m just waiting for a call to schedule the procedure. They will do full scans prior just to make sure that’s all I have again and hopefully I’ll get one more set of scans before they refer me back to my regular doctor.
My wife got her mamogram report, it was nothing, some sort of shadow or benign spot that’s been there in prior scans, so all is good there as well.
The battle continues…winning one skirmish at a time.
Tuesday, August 7, 2007
Scanxiety
What is “scanxiety”? It when you are scared shitless of what the next scans may show. I’m off to the NIH tomorrow for post op scans and discussion about the rib lesion that shows on the bone scan. Do I have scanxiety? I don’t know, I’m a little nervous I guess, I want the rib thing to be the only thing so it can be dealt with as soon as possible. But the NIH may not do it unless I’m in a trial or I can sweet talk them into doing it.
I have a feeling HD IL2 is going to be brought up…it may be the best option while I’m strong and feeling well.
On top of this my wife had an “abnormal ” mamogram so she had to go back for more detailed imaging….now that was plain old anxiety…. the preliminary results show something but they are calling it benign. Somewhat of a relief but I think she should follow up with another radiologist to read the images. I am really happy for her though, we have enough going on. She would have been devastated as I would have been.
I took my family grubbin for gems in North Georgia last Saturday. Had good relaxing time sitting in a stream panning for gold and gemstones. Actually got some really cool raw gems, emeralds, topaz and others. It was fun. Trying to figure out what to do next. I think subconsiously I’m trying to create more good memories.
Hoping for the best…planning for the worst.
I have a feeling HD IL2 is going to be brought up…it may be the best option while I’m strong and feeling well.
On top of this my wife had an “abnormal ” mamogram so she had to go back for more detailed imaging….now that was plain old anxiety…. the preliminary results show something but they are calling it benign. Somewhat of a relief but I think she should follow up with another radiologist to read the images. I am really happy for her though, we have enough going on. She would have been devastated as I would have been.
I took my family grubbin for gems in North Georgia last Saturday. Had good relaxing time sitting in a stream panning for gold and gemstones. Actually got some really cool raw gems, emeralds, topaz and others. It was fun. Trying to figure out what to do next. I think subconsiously I’m trying to create more good memories.
Hoping for the best…planning for the worst.
Thursday, August 2, 2007
Mixed Emotions
Well we did it… we booked our trip to Punta Cana, Dominican Republic for January… 7 nights at the Majestic Colonial, all inclusive. Hopefully it will be a great vacation, looking forward to it.
I got my PCP to order the bone scan for the rib pain and went yesterday…I don’t have the official report yet but I don’t need one, I have the film. There is one “hot spot” on the rib that has the pain so I know its metastatic RCC to my rib now. I pretty much knew it was but seeing it for real is a bummer, I had some hope that it was nothing.
So now I’ll be going to the NIH next week for follow up and CT armed with the bone scan results and we’ll go from there. I don’t know what they will recommend. I think it will depend on if all I have is one bone met or if there is more revealed by the CT.
I got my PCP to order the bone scan for the rib pain and went yesterday…I don’t have the official report yet but I don’t need one, I have the film. There is one “hot spot” on the rib that has the pain so I know its metastatic RCC to my rib now. I pretty much knew it was but seeing it for real is a bummer, I had some hope that it was nothing.
So now I’ll be going to the NIH next week for follow up and CT armed with the bone scan results and we’ll go from there. I don’t know what they will recommend. I think it will depend on if all I have is one bone met or if there is more revealed by the CT.
Thursday, July 26, 2007
My Busy Brain
Well I made it through another week of work, doing fine. Still have the sore right rib. I am considering trying to get a bone scan on my own through my PCP before I go to the NIH on Aug 8th, can’t decide. If it was to show something, I’ll still be waiting until the 8th but at least I’ll know why it hurts. I keep going backand forth, don’t even know if I could get one done before the 8th.
I’m thinking about planning a vacation…haven’t personally had one or been able to afford one since my diagnosis/treatments started over 2 years ago. I want to chose a date and plan it and invite family members but I’m worried about what might happen to me in between now and the time to go as far as treatments…I’m sure I’ll be here but in what condition. I won’t go unless I can fully enjoy it. I don’t want to have to stay close to a bathroom, stay out of the sun or any of those things associated with treatments. Guess I’ll have to purchase travel insurance…
Thinking about an all-inclusive in the carribean…pretty much narrowed down to Punta Cana, Dominican Republic or Aruba…any input is appreciated. Considered cruising, been there, done that. It’s OK but the bar bills were crazy. I’ve never done an all inclusive but they make it sound very appealing. I want to be able sit under a palm tree in the shade with my wife or lose my money in a casino with a drink. I don’t ask for much. I just need to give my Brain a break!
I’m thinking about planning a vacation…haven’t personally had one or been able to afford one since my diagnosis/treatments started over 2 years ago. I want to chose a date and plan it and invite family members but I’m worried about what might happen to me in between now and the time to go as far as treatments…I’m sure I’ll be here but in what condition. I won’t go unless I can fully enjoy it. I don’t want to have to stay close to a bathroom, stay out of the sun or any of those things associated with treatments. Guess I’ll have to purchase travel insurance…
Thinking about an all-inclusive in the carribean…pretty much narrowed down to Punta Cana, Dominican Republic or Aruba…any input is appreciated. Considered cruising, been there, done that. It’s OK but the bar bills were crazy. I’ve never done an all inclusive but they make it sound very appealing. I want to be able sit under a palm tree in the shade with my wife or lose my money in a casino with a drink. I don’t ask for much. I just need to give my Brain a break!
Friday, July 20, 2007
The Peaceful Warrior
I went back to work Monday night and made it through my three days with no problem except being a little tired but that’s part of working nights.
After missing 4 weeks of work and opting to use vacation instead of sick time and getting into STD, my managers only took 84 hours of vacation from me, they’ve been real good to me. I’m lucky in that respect.
Things have settled down some after finding out about the scalp met. The rib still hurts but I’m waiting until August 8th for scans before I get too excited. It doesn’t do any good. I watched a movie last night called “Peaceful Warrior” I thought it was good and the message was to focus on the now, not the past, not the future. Easy to say but nonetheless a good message. Nick Nolte was in it, I recommend it.
After missing 4 weeks of work and opting to use vacation instead of sick time and getting into STD, my managers only took 84 hours of vacation from me, they’ve been real good to me. I’m lucky in that respect.
Things have settled down some after finding out about the scalp met. The rib still hurts but I’m waiting until August 8th for scans before I get too excited. It doesn’t do any good. I watched a movie last night called “Peaceful Warrior” I thought it was good and the message was to focus on the now, not the past, not the future. Easy to say but nonetheless a good message. Nick Nolte was in it, I recommend it.
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