Well everyone once again amazes Marnie and I with the support, thoughts and prayers.
I wanted to share something that someone wrote back to us, that really struck home for us both. It was worth reading over and over, each time I feel the connection and the support that continues to be so prevalent from all of you.
"Strength and courage as you begin the next phase - my sense is that you have plenty of both! But if yours should falter draw on the strength and courage of those who surround you with love and care. There are many of us walking this journey, with you in our hearts!"
With some dates now set, things are moving. Will be having the medi-port installed on Wednesday Mar 4th, in preparation for the Chemotherapy the following Monday. Also meeting with the Melanie (Dr. Heyer's Nurse Practitioner) on Tuesday to discuss some some of the more mundane, yet important aspects of Chemo. Will be taking Shannon & Ashely with us to that appointment, so that they can see things, ask any questions etc. It was one of the things that Dr. Heyer encouraged us to do, very holistic approach, saying that the families (kids) are welcome so that they can see what's going on.
Friday, February 27, 2009
Thursday, February 26, 2009
Choice A or Choice B?
Wondering how to start this and what to say.. thinking I should be drinking a good single malt right now, but alas.. that is upstairs! LOL
So the last couple days have been odd, starting to feel back to normal as I have been recovering from the surgery. Yet still tire out from the oddest things and just want to have a sit and rest. On top of that has just been the waiting to talk to Dr. Heyer (Oncologist). It has been difficult just trying to function normally with that hanging over my head. Nothing much going on, just dealing with work and then hanging out with the family the last couple evenings. Marnie and I had a good date night on Tuesday with a nice quiet dinner and drinks at a local Irish pub.
Today started off at 2:30am when I awoke and couldn’t get back to sleep, my mind was racing with everything going on. So I headed down to the trusty recliner, so that Marnie could get some sleep with out me disturbing her. We got the girls up and went to Donuts with Dad at their school; this is a monthly event that encourages parents to be involved with the children’s learning, in math, reading and other areas. This morning’s topic was Geometry, but it was below the girl’s level, so they were more interested in the Donuts! LOL
First appointment of the day was with Dr. Lialas (Urologist), he was pleased with the progress and recovery from the surgery and we talked about the possibilities after we are done with Chemotherapy. He was very upbeat and encouraging. Then upstairs to finally see Dr. Heyer, were there early and ended up waiting A LONG TIME! LOL While waiting, saw our neighbor who is recovery from lung cancer who, has been receiving treatment at the same practice and they really like the staff and Dr’s, so a very encouraging recommendation.
Dr. Heyer came in and it was good, he was just like we had heard, very personable, knowledgeable and he treated us both well. He talked at a level that was right for both Marnie and then we would get technical together. Never felt like he was pushing his own agenda, rather he took the time to listen to our thoughts, answer our questions and concerns. Must have sat there talking for over an hour as we discussed the two possible regime’s for treating this cancer. He never pushed one over the other, as both are highly effective, rather he just gave impartial pros and cons of each one, so that we could make an informed decision.
So here’s the real meat of the post, after talking to him and talking with Marnie, Dr. Heyer doesn’t want to wait, but rather be a bit aggressive as we don’t know the doubling time of this secondary tumor. After going over things, due to the size and type of tumor the protocol is Chemotherapy at this point. Based on our talking decided to go with a 3 cycle (9 weeks) regime of 3 drugs called BEP (Bleomycin, Etoposide, Cisplatin) This is opposed to a 4 cycle (12 week) regime of EP (Etoposide, Cisplatin). Not only is the BEP a shorter time, but the longer one is on Cisplatin, the more chance of other side effects, as it’s a cumulative risk the longer you take the drug.
With BEP, the Bleomycin will have some impact on lung function, so the worst case here is that I may never be able to SCUBA dive again. But that’s the worst case, and because of the shorter time taking Cisplatin, less chance of having permanent nerve damage that affects my hearing and touch. So that’s the route we chose after looking at the pro’s and con’s of each treatment.
They are going to install a port in my chest to administer the drugs, draw blood from and give me IV fluids, so that they aren’t constantly sticking my arm. Also this will minimize the possibility of veins being burned out by the drugs and me looking like junkie with track marks! Will be having the port inserted sub cutaneously (under the skin) next week. Then I will be starting the first round of Chemotherapy on Monday March 9th. This means I get Etoposide and Cisplatin Mon-Friday of week 1, while I will be getting Bleomycin every Tuesday for 3 weeks straight. Then have weeks 2 and 3 to recover (aside from the Bleo every Tuesday). That is a cycle and I get to repeat it back to back 3 times. So 9 weeks of fun with some nasty poisons coursing through my body.
The hope is that this kills any metastases as well as the 6 cm secondary tumor. Ideally it should shrink the tumor to nothing, but if there is anything left after the 9 weeks they will go in and surgically remove any remnants at that time. This will be determined by a CT scan upon completion of the 3 cycles of chemo and by blood work monitoring the tumor markes.
So that’s about the jist of things, while it’s good to be getting going, and know the plan. It’s also hard, because the plan means for the next 2 months I’m going to be rather miserable. I will lose my hair, however Dr. Heyer said that they now use a family of anti-nausea meds to help stimulate the appetite and shouldn’t see significant weight loss. Also will have significant fatigue from the drugs, and that will be most prevalent during the first 10 days of each 21 day cycle. So enjoy it while it lasts! Will be sure to take plenty of photo’s and capture the moments.
Had a good sit down this evening with the girls and we talked, Ashley and Shannon both seemed to be doing well with things, Marnie too! They asked some questions and like that I was going to be bald (well Ashley did ..hhehehe) It was good to see that they weren’t scared, Shannon gets it and understand a lot, think she’s holding back more than she’s saying, but we’ll see as things progress. My mother is going to be coming out for the first 2 cycles of chemo, so that will really help Marnie as she wasn’t sure how she was going to make it through the first cycle! My younger sister was already planning to visit in early April for Spring Break, so she’ll be here too to lend a hand were needed.
It’s a lot for me to take in, absorb and deal with. Good to know that we’re moving forward expeditiously to eradicate those traitors! But have to say, not looking forward to being poisoned and all the side effects that come with that. But on the other hand, looking forward to the light at the end of the tunnel when the cancer is gone and I’m baaaaaccccckkkkkk!!
So the last couple days have been odd, starting to feel back to normal as I have been recovering from the surgery. Yet still tire out from the oddest things and just want to have a sit and rest. On top of that has just been the waiting to talk to Dr. Heyer (Oncologist). It has been difficult just trying to function normally with that hanging over my head. Nothing much going on, just dealing with work and then hanging out with the family the last couple evenings. Marnie and I had a good date night on Tuesday with a nice quiet dinner and drinks at a local Irish pub.
Today started off at 2:30am when I awoke and couldn’t get back to sleep, my mind was racing with everything going on. So I headed down to the trusty recliner, so that Marnie could get some sleep with out me disturbing her. We got the girls up and went to Donuts with Dad at their school; this is a monthly event that encourages parents to be involved with the children’s learning, in math, reading and other areas. This morning’s topic was Geometry, but it was below the girl’s level, so they were more interested in the Donuts! LOL
First appointment of the day was with Dr. Lialas (Urologist), he was pleased with the progress and recovery from the surgery and we talked about the possibilities after we are done with Chemotherapy. He was very upbeat and encouraging. Then upstairs to finally see Dr. Heyer, were there early and ended up waiting A LONG TIME! LOL While waiting, saw our neighbor who is recovery from lung cancer who, has been receiving treatment at the same practice and they really like the staff and Dr’s, so a very encouraging recommendation.
Dr. Heyer came in and it was good, he was just like we had heard, very personable, knowledgeable and he treated us both well. He talked at a level that was right for both Marnie and then we would get technical together. Never felt like he was pushing his own agenda, rather he took the time to listen to our thoughts, answer our questions and concerns. Must have sat there talking for over an hour as we discussed the two possible regime’s for treating this cancer. He never pushed one over the other, as both are highly effective, rather he just gave impartial pros and cons of each one, so that we could make an informed decision.
So here’s the real meat of the post, after talking to him and talking with Marnie, Dr. Heyer doesn’t want to wait, but rather be a bit aggressive as we don’t know the doubling time of this secondary tumor. After going over things, due to the size and type of tumor the protocol is Chemotherapy at this point. Based on our talking decided to go with a 3 cycle (9 weeks) regime of 3 drugs called BEP (Bleomycin, Etoposide, Cisplatin) This is opposed to a 4 cycle (12 week) regime of EP (Etoposide, Cisplatin). Not only is the BEP a shorter time, but the longer one is on Cisplatin, the more chance of other side effects, as it’s a cumulative risk the longer you take the drug.
With BEP, the Bleomycin will have some impact on lung function, so the worst case here is that I may never be able to SCUBA dive again. But that’s the worst case, and because of the shorter time taking Cisplatin, less chance of having permanent nerve damage that affects my hearing and touch. So that’s the route we chose after looking at the pro’s and con’s of each treatment.
They are going to install a port in my chest to administer the drugs, draw blood from and give me IV fluids, so that they aren’t constantly sticking my arm. Also this will minimize the possibility of veins being burned out by the drugs and me looking like junkie with track marks! Will be having the port inserted sub cutaneously (under the skin) next week. Then I will be starting the first round of Chemotherapy on Monday March 9th. This means I get Etoposide and Cisplatin Mon-Friday of week 1, while I will be getting Bleomycin every Tuesday for 3 weeks straight. Then have weeks 2 and 3 to recover (aside from the Bleo every Tuesday). That is a cycle and I get to repeat it back to back 3 times. So 9 weeks of fun with some nasty poisons coursing through my body.
The hope is that this kills any metastases as well as the 6 cm secondary tumor. Ideally it should shrink the tumor to nothing, but if there is anything left after the 9 weeks they will go in and surgically remove any remnants at that time. This will be determined by a CT scan upon completion of the 3 cycles of chemo and by blood work monitoring the tumor markes.
So that’s about the jist of things, while it’s good to be getting going, and know the plan. It’s also hard, because the plan means for the next 2 months I’m going to be rather miserable. I will lose my hair, however Dr. Heyer said that they now use a family of anti-nausea meds to help stimulate the appetite and shouldn’t see significant weight loss. Also will have significant fatigue from the drugs, and that will be most prevalent during the first 10 days of each 21 day cycle. So enjoy it while it lasts! Will be sure to take plenty of photo’s and capture the moments.
Had a good sit down this evening with the girls and we talked, Ashley and Shannon both seemed to be doing well with things, Marnie too! They asked some questions and like that I was going to be bald (well Ashley did ..hhehehe) It was good to see that they weren’t scared, Shannon gets it and understand a lot, think she’s holding back more than she’s saying, but we’ll see as things progress. My mother is going to be coming out for the first 2 cycles of chemo, so that will really help Marnie as she wasn’t sure how she was going to make it through the first cycle! My younger sister was already planning to visit in early April for Spring Break, so she’ll be here too to lend a hand were needed.
It’s a lot for me to take in, absorb and deal with. Good to know that we’re moving forward expeditiously to eradicate those traitors! But have to say, not looking forward to being poisoned and all the side effects that come with that. But on the other hand, looking forward to the light at the end of the tunnel when the cancer is gone and I’m baaaaaccccckkkkkk!!
Tuesday, February 24, 2009
Forms, paperwork and more forms...
Been an interesting couple days, Sunday was a very needed and relaxing lull before the storm. Marnie had to leave for a work trip around noon, so the girls and I just chilled. Watched some TV with the girls, some movies, surfed the net for a while, did some organization of files, and played Rock Band with the girls! A few things were productive the others were just need recuperation time.
Well yesterday got a full day in at the office again, although I was hurting by the end of the day. Sore and tired, think I was asleep before the girls! LOL The girls were good in the morning, we got out of the house on time, and the rest of the external stitches came out that morning (ok so I helped just a wee bit with the last couple ;-) ). The incision is healing very nicely, although still slightly swollen and tender to the touch. I am really pleased with how Dr. Lialas did the surgery and were the incision is located. The scar will be very thin and hard to notice when fully healed.
So finished filling out all the forms for the Dr. Heyer, the Oncologist. I think it was something like 12 pages of forms about medical history, history of cancer in the family, as well as the usual first visit stuff! Luckily I was able to do that packet of forms online, so that was really cool. Went over to Dr. Heyer's office to drop of all the lab reports, CT results and paperwork from Dr. Lialas so that Dr. Heyer could review it before my appointment on Thursday. When I asked the receptionist if that was everything they needed.. got more stuff to fill out! LOL Some medical release paperwork, and insurance stuff. I think I have finally gotten it all taken care of now. WHEW!
This week is a little strange as things are so back to normal after the last two weeks. Marnie traveling a couple days for work, kids in school, me back working like nothing has happened. Yet looming out there on the horizon is the knowledge of what is to come, Chemotherapy. While I don't want to know and would love to put it off!! Know all to well that I just need to get in there and moving with that next step and get through it. This waiting is starting to get to me. It is just kind of gnawing at the back of my mind and can't wait to just put this all behind me!
Continue to get emails from family and friends, that leave me hunting for tissue, that reaffirm my faith and remind me how lucky I am to have people like you that truly do care about me. Really makes me think and wonder what I did to be so honored with your concern and friendship?
Well yesterday got a full day in at the office again, although I was hurting by the end of the day. Sore and tired, think I was asleep before the girls! LOL The girls were good in the morning, we got out of the house on time, and the rest of the external stitches came out that morning (ok so I helped just a wee bit with the last couple ;-) ). The incision is healing very nicely, although still slightly swollen and tender to the touch. I am really pleased with how Dr. Lialas did the surgery and were the incision is located. The scar will be very thin and hard to notice when fully healed.
So finished filling out all the forms for the Dr. Heyer, the Oncologist. I think it was something like 12 pages of forms about medical history, history of cancer in the family, as well as the usual first visit stuff! Luckily I was able to do that packet of forms online, so that was really cool. Went over to Dr. Heyer's office to drop of all the lab reports, CT results and paperwork from Dr. Lialas so that Dr. Heyer could review it before my appointment on Thursday. When I asked the receptionist if that was everything they needed.. got more stuff to fill out! LOL Some medical release paperwork, and insurance stuff. I think I have finally gotten it all taken care of now. WHEW!
This week is a little strange as things are so back to normal after the last two weeks. Marnie traveling a couple days for work, kids in school, me back working like nothing has happened. Yet looming out there on the horizon is the knowledge of what is to come, Chemotherapy. While I don't want to know and would love to put it off!! Know all to well that I just need to get in there and moving with that next step and get through it. This waiting is starting to get to me. It is just kind of gnawing at the back of my mind and can't wait to just put this all behind me!
Continue to get emails from family and friends, that leave me hunting for tissue, that reaffirm my faith and remind me how lucky I am to have people like you that truly do care about me. Really makes me think and wonder what I did to be so honored with your concern and friendship?
Saturday, February 21, 2009
Pain sucks..
Well it does.. and it sucks the energy right out of you.. just amazing how one little thing this afternoon turned my whole evening upside down. Had a nice relaxing day for the most part, and then went to pick Ashley up without thinking about it. Got her about 2 inches off the ground and went OMG!!
This evening I have just been hurting from that simple thing, feeling drained and pretty much useless. It's amazing how that little faux pas, just ruined the evening. And it's really getting old hurting!
On another note, just realized that I hate not being able to do those things, can't carry a basket full of clothes up the stairs, can't pick up my daughter, can't do this... can't do that.... AAAAAARRRRRRRGGGGGGHHHHHHH!!! And then I feel like I'm burdening Marnie, cause she's having to do those things. Top that off with when I'm hurting and just want to lie down in the recliner and she's trying to get things done around the house. Makes me feel pretty low, not feeling like I'm contributing and helping out. I mean I know I can't do this stuff.. but still bugs me.
Ah well on a happier note, some friends came over and we rocked out with Rock Band for a bit.. that was a good time!
This evening I have just been hurting from that simple thing, feeling drained and pretty much useless. It's amazing how that little faux pas, just ruined the evening. And it's really getting old hurting!
On another note, just realized that I hate not being able to do those things, can't carry a basket full of clothes up the stairs, can't pick up my daughter, can't do this... can't do that.... AAAAAARRRRRRRGGGGGGHHHHHHH!!! And then I feel like I'm burdening Marnie, cause she's having to do those things. Top that off with when I'm hurting and just want to lie down in the recliner and she's trying to get things done around the house. Makes me feel pretty low, not feeling like I'm contributing and helping out. I mean I know I can't do this stuff.. but still bugs me.
Ah well on a happier note, some friends came over and we rocked out with Rock Band for a bit.. that was a good time!
Friday, February 20, 2009
Trying to organize
Well you may be reading this whole thing for the first time, or again, not sure. But wanted to combine all the bits and pieces into one place, and it has really been helpful and cathartic for me to write it all down here.
It’s still hard to fathom that it’s been 2 weeks since surgery and I found out I had cancer, and just a week since I found out that it had spread. Doing so much better coming to terms with everything now, but at times it is just oppressive and have a good cry on Marnie’s shoulder.
For the most part getting my strength back now after the surgery. Yesterday was a minor set back when the cat decided to bound across our bed and landed full force with both front paws on my incision site. Let’s just say that I was seeing stars and the cat went flying! Some ibuprofen and a couple hours supine really helped things a lot and did wonders for me. Each day I’m gaining back more strength, still tire a little too easy and strange things will set me back, but overall moving forward and onward.
Will probably be a lull in updates, until after I see the oncologist on Thursday, February 26th. At that time, we get a lot more questions answered, and will be sharing that out with everyone. Until then just working on continuing to recover from the surgery and getting things squared away as much as possible in anticipation of being out of things for a bit once I start chemotherapy. For those that are interested in helping out, please do contact Christine Chambliss as she is the one who is coordinating things for us.
Continue to be astounded by the responses from those near and afar, it has really meant a lot to Marnie and me the way you have all offered support in one form or another. We are truly very lucky to have you as our friends!
It’s still hard to fathom that it’s been 2 weeks since surgery and I found out I had cancer, and just a week since I found out that it had spread. Doing so much better coming to terms with everything now, but at times it is just oppressive and have a good cry on Marnie’s shoulder.
For the most part getting my strength back now after the surgery. Yesterday was a minor set back when the cat decided to bound across our bed and landed full force with both front paws on my incision site. Let’s just say that I was seeing stars and the cat went flying! Some ibuprofen and a couple hours supine really helped things a lot and did wonders for me. Each day I’m gaining back more strength, still tire a little too easy and strange things will set me back, but overall moving forward and onward.
Will probably be a lull in updates, until after I see the oncologist on Thursday, February 26th. At that time, we get a lot more questions answered, and will be sharing that out with everyone. Until then just working on continuing to recover from the surgery and getting things squared away as much as possible in anticipation of being out of things for a bit once I start chemotherapy. For those that are interested in helping out, please do contact Christine Chambliss as she is the one who is coordinating things for us.
Continue to be astounded by the responses from those near and afar, it has really meant a lot to Marnie and me the way you have all offered support in one form or another. We are truly very lucky to have you as our friends!
Wednesday, February 18, 2009
Mid-week review
Well trying to get back to semblance of normalcy again after the last 10 days of surreal existence.
Got things all lined up for the oncologist (Dr. Heyer) and they are so with the 21st century that it’s cool. Filled out all the paperwork online! That was a nice reprieve from having to sit in the waiting room doing that there. Additionally over the last couple days have heard from a couple people that Dr. Heyer and his group are really, really good. So that was nice unsolicited information to get and helps assuage any doubts.
Been recovering from the initial surgery and that is going well. The incision is healing nicely and some of the swelling is going down. Tried to wear pants for the first time on Sunday afternoon, that didn’t go too well! I really impacted against things and after a couple hours I was out for the count from the pain. Since then been back in sweat pants until today.
Trying for a full day back in the office, and wearing normal clothing, although did bring some looser fitting stuff, just in case! We’ll see how that goes, both with the clothing and making it all day sitting in the office. Got in a few hours yesterday afternoon, so been working up to things slowly.
Mentally I have been getting my head around things and on top of everything that has happened, the implications and effects. Getting there slowly and most of the time doing well, sometimes I have those moments and just try to get through them. Was answering emails yesterday and realized that writing here has been some what cathartic for me, so will be continuing to do this every few days. I still worry for Marnie and the girls, talked to Shannon last night on our way to dinner with the motorcycle club and she seems to understand, but is quiet and not sure it has all sunk in for her. She got a big kick out of the fact, that there is a chance I could lose my hair during the treatment. Ashley just continues to give the unconditional hugs and love, she knows Dad is sore, hurting and there’s more to come. Marnie and I have had some good cries together; it has been good for us. Sometimes things out of the blue will strike one or both of us and it’s time to hunt for the Kleenex.
Christine Chambliss and I talked this morning and she told me that you all have already booked out March and April for providing us meals! She’s going to add Tuesdays to the list. Additionally Christy and Kim Mister have set up a PayPal account for those who want to contribute something but can’t cook or are too far away. They are going to use the money to order out for us..fantastic!
We continue to be amazed by the out pouring of support for us and that is just so humbling. You are all truly awesome people and I’m blessed to have you involved in my life.
Got things all lined up for the oncologist (Dr. Heyer) and they are so with the 21st century that it’s cool. Filled out all the paperwork online! That was a nice reprieve from having to sit in the waiting room doing that there. Additionally over the last couple days have heard from a couple people that Dr. Heyer and his group are really, really good. So that was nice unsolicited information to get and helps assuage any doubts.
Been recovering from the initial surgery and that is going well. The incision is healing nicely and some of the swelling is going down. Tried to wear pants for the first time on Sunday afternoon, that didn’t go too well! I really impacted against things and after a couple hours I was out for the count from the pain. Since then been back in sweat pants until today.
Trying for a full day back in the office, and wearing normal clothing, although did bring some looser fitting stuff, just in case! We’ll see how that goes, both with the clothing and making it all day sitting in the office. Got in a few hours yesterday afternoon, so been working up to things slowly.
Mentally I have been getting my head around things and on top of everything that has happened, the implications and effects. Getting there slowly and most of the time doing well, sometimes I have those moments and just try to get through them. Was answering emails yesterday and realized that writing here has been some what cathartic for me, so will be continuing to do this every few days. I still worry for Marnie and the girls, talked to Shannon last night on our way to dinner with the motorcycle club and she seems to understand, but is quiet and not sure it has all sunk in for her. She got a big kick out of the fact, that there is a chance I could lose my hair during the treatment. Ashley just continues to give the unconditional hugs and love, she knows Dad is sore, hurting and there’s more to come. Marnie and I have had some good cries together; it has been good for us. Sometimes things out of the blue will strike one or both of us and it’s time to hunt for the Kleenex.
Christine Chambliss and I talked this morning and she told me that you all have already booked out March and April for providing us meals! She’s going to add Tuesdays to the list. Additionally Christy and Kim Mister have set up a PayPal account for those who want to contribute something but can’t cook or are too far away. They are going to use the money to order out for us..fantastic!
We continue to be amazed by the out pouring of support for us and that is just so humbling. You are all truly awesome people and I’m blessed to have you involved in my life.
Sunday, February 15, 2009
What you can do to help
We are in awe of the number of people who want to help out in some way. It has truly taken us by surprise and Marnie & I were just talking about figuring out some way that people could contribute. I know for me, the old saying about being as wealthy as the number of friends you have is coming so true and catching me off guard with the out pouring from folks. It brings tears to my eyes just thinking that in some way We/I have touched so many people that so many of you want to reach back and help us out.
Low and behold, Christine Chambliss wrote us and has offered to coordinate things for meals, etc starting that first week in March. If that is something you would like to help out with, then please contact her at cchambliss1001@yahoo.com She has some other ideas as well, so share with her, and that would be great! She has set up a public calendar at http://calendar.yahoo.com/cchambliss1001 to help with the coordination of things.
This fits well, as in the next couple weeks we are just trying to get some small stuff wrapped up and get ready for the next push when I meet with the Oncologist on Thursday Feb 26th. I'm sure that it will be then that things will be getting rather crazy and that is when we will need the most assistance. Beyond that at this point, we are keeping our spirits up, I'm recovering from the surgery and trying to get back to normal to keep from going stir crazy! LOL
Again you really shock and amaze us. Thank you so much for all you have/are doing for us, we are truly blessed.
p.s. Please feel free to forward this to others whom we have missed...
Low and behold, Christine Chambliss wrote us and has offered to coordinate things for meals, etc starting that first week in March. If that is something you would like to help out with, then please contact her at cchambliss1001@yahoo.com She has some other ideas as well, so share with her, and that would be great! She has set up a public calendar at http://calendar.yahoo.com/cchambliss1001 to help with the coordination of things.
This fits well, as in the next couple weeks we are just trying to get some small stuff wrapped up and get ready for the next push when I meet with the Oncologist on Thursday Feb 26th. I'm sure that it will be then that things will be getting rather crazy and that is when we will need the most assistance. Beyond that at this point, we are keeping our spirits up, I'm recovering from the surgery and trying to get back to normal to keep from going stir crazy! LOL
Again you really shock and amaze us. Thank you so much for all you have/are doing for us, we are truly blessed.
p.s. Please feel free to forward this to others whom we have missed...
Saturday, February 14, 2009
Test Results
Well Wednesday (Feb 11th) was test day. Having gotten my Chest X-ray on Tuesday also picked up the 2 bottles of barium for the CT scans. Course I slept like crap Tuesday night and was up at 3am Wednesday morning never made it back to sleep that day. Couldn't eat for 6 hours prior to my tests and then 2 hours prior had to start drinking the barium contrast (foulest stuff known to man, blech!) in preparation for the 2:30pm CT Abdomen & Pelvis (w & w/o contrast). So get over to the radiology place, drink half of the second bottle, getting ready to head in and then they finally read my paperwork and see that I'm allergic to Benadryl. Well that threw them for a loop, as Benadryl is what they use if someone has an allergic reaction to the CT contrast! They were scared I might have a problem (why I don't know.. told them I'm not allergic to the contrast!), anyways they decided that I should have the CT done at the hospital. At which point I got a bit irate, having already drunk 1 ½ bottles of foulness, was not going to have that be wasted! To make a long story short, we had to drive down to Fairfax Hospital to have the CT done. A couple paper work loopholes to jump through, great techs and a long walk from/back to the parking garage later and it was all done. Got home exhausted from not eating, and all the walking/use of energy and I was wiped out. Some food and I crashed hard. Think I actually slept in our bed that night for the first time since the surgery.
Thursday morning (Feb 12th) and feeling much better after a good 10 hours sleep and going to make it into work today for a little bit. That went well, was good to get out of the house, be functional and feels like I was a little productive even! Cleaned out my inbox, got a few messages answered and even attended a meeting, before I was running down, so made it almost 4 hours before I came home, crashed out for a while and then was awoken by the phone ringing. It was Clearview Elementary calling and we needed to come pick up Shannon, cause she had a fever. So off I go down to school to collect my daughter, get her home and take her temp 104.5.. NICE! Well let's just say that Thursday afternoon didn't turn out how I envisioned and spent the time managing her fever with ice packs, Motrin and lots of TLC. That evening a friend brought us dinner which was REALLY NICE, because I was exhausted and Marnie was now being the TLC for Shannon. Moved back to the recliner that evening, as Shannon and Marnie fell asleep in our bed upstairs. I didn't want to take the chance of Shannon rolling/moving her sleep and hitting my incision site on the left, so back downstairs to my trusty chair. Kept waking up every couple hours and didn't sleep soundly.
Well now we are getting to the good stuff, you had to read all the catch up to get to Friday (Feb 13th). Scheduled to see the urologist (Dr. Lailas, whom Marnie and I both really like a lot!) at 2pm. So stayed home in the morning for a bit with Shannon who is feeling like normal now! Then off to work for a farewell lunch with one of my guys who was leaving, didn't want to miss sending him off, and an All Hands meeting for our division, that my boss had asked me attend in person if possible. All is good, being at the office went better than the day before and swung by the house, picked up Marnie (she came home early, so that Shannon wasn't home alone) and off we go to see Dr. Lailas. Took over an hour before we finally see him (turns out his staff had been calling the wrong place to get the pathology report! Duoh!) I think I finally fell asleep curled up on the exam table..hehehehe He finally comes in and likes the way the incision is healing, we talk about the pain in my left abdomen/pelvis from his removal of the spermatic cord and moving things around.
Things are light hearted and then they took a more somber note, when he said I have good, bad, and bad news. The good news is that pathology report showed that the tumor in my testicle was indeed a seminoma. First bit of bad news was that I had two types of cancer. Not only was it a seminoma, but it was mixed with a teratoma, with some necrosis noted in the pathology report. As an aside, the ultrasound showed that there were actually 2 mass in my testicle, one was 3 x 1.9 x 2 cm and the other was 1.7 x 1.5 x 2 cm, of this seminoma/teratoma mixed cancer. The other interesting thing to note here is that the blood work showed only elevated levels of the tumor markers LDH, the levels of AFP (alpha fetal protein) and hCG (human chorionic gonadotropin) were both normal. This usually is indicative of just a seminoma, with other types of testicular cancers they usually see increased levels of AFP and hCG, well just goes to show you I'm not normal.. but heck most of you already knew that!
Now the final bit of bad news has been the hardest one to digest and still trying to process all the implications. The CT scan showed that the cancer had indeed metasized to my abdomen. There is a 6 cm mass. The cancer has traveled up the lymphatic system to its favorite site and has grown there in the retroperitoneal space between my left kidney and aorta. At this point, that was the only mass seen, there was no infiltration to other abdominal organs or the lungs. Right now I'm classified as Stage IIC (this is due to the size of the metasized mass). The survival rate for this is like 95-98%
So what does all this mean? Well it means that I had something for a bit longer than I thought! LOL as well it means that I get to endure the joys of chemo therapy. Right now I have to heal up from the surgery, and then I see the oncologist on Feb 26th. It is then that I find out what the plan of attack is to kill those renegades who have infested my body, as well as what form of chemical warfare will be used, and all the lovely side effects. More on this topic after I see the oncologist in a couple weeks.
Must admit that I feel like crap right now, what had started off seeming so positive, has definitely taken an unexpected turn. Am still trying to process things mentally and damn if it's not kicking my ass at times. I know now, which has helped with the fears of the unknown that were plaguing me before, but damn.. didn't want to know this!! Not going to let this change me from the optimistic person I am, but just taking longer than usual for me to deal with this and that's killing me. The other aspect is that I feel so out of control, I can't do much at this point and so much is in the hands of others. Those that know me know how I thrive on being in control, and having that control.
Ok, so that's the latest and some of you are going, Holy Crap!, others are probably a bit shell shocked, and some are going f'ing cancer and let's nuke that tumor. Well trust me when I say I that I've already been and continue to go through that range of thoughts/emotions.
How can you help? Well keep the thoughts and prayers coming, those are very welcomed, much appreciated and valued. So many of you have called, written and offered to help in any way, and truly wish that I could take everyone of you up on your offers! Right now I think the best help is going to be keeping the girls busy with play dates/sleep over's. And then when the chemo starts, I'm sure some meals on wheels would help out Marnie so she does not have to figure out what to make for dinner every night (usually my job! LOL). For me right now, helping Marnie and the girls is going to be the biggest help for me. I worry about how this going to affect them. At times I'm scared of failing them, being that 2% and leaving them. I know that I have to take things day by day, but damn my mind is going a mile/minute, analyzing this angle, that angle, what are the possibilities of this/that, effects, etc. and everything is a bit over whelming right now.
So trying to sort it all out, devise a strategy, fix some milestones and then execute to perfection!
Thursday morning (Feb 12th) and feeling much better after a good 10 hours sleep and going to make it into work today for a little bit. That went well, was good to get out of the house, be functional and feels like I was a little productive even! Cleaned out my inbox, got a few messages answered and even attended a meeting, before I was running down, so made it almost 4 hours before I came home, crashed out for a while and then was awoken by the phone ringing. It was Clearview Elementary calling and we needed to come pick up Shannon, cause she had a fever. So off I go down to school to collect my daughter, get her home and take her temp 104.5.. NICE! Well let's just say that Thursday afternoon didn't turn out how I envisioned and spent the time managing her fever with ice packs, Motrin and lots of TLC. That evening a friend brought us dinner which was REALLY NICE, because I was exhausted and Marnie was now being the TLC for Shannon. Moved back to the recliner that evening, as Shannon and Marnie fell asleep in our bed upstairs. I didn't want to take the chance of Shannon rolling/moving her sleep and hitting my incision site on the left, so back downstairs to my trusty chair. Kept waking up every couple hours and didn't sleep soundly.
Well now we are getting to the good stuff, you had to read all the catch up to get to Friday (Feb 13th). Scheduled to see the urologist (Dr. Lailas, whom Marnie and I both really like a lot!) at 2pm. So stayed home in the morning for a bit with Shannon who is feeling like normal now! Then off to work for a farewell lunch with one of my guys who was leaving, didn't want to miss sending him off, and an All Hands meeting for our division, that my boss had asked me attend in person if possible. All is good, being at the office went better than the day before and swung by the house, picked up Marnie (she came home early, so that Shannon wasn't home alone) and off we go to see Dr. Lailas. Took over an hour before we finally see him (turns out his staff had been calling the wrong place to get the pathology report! Duoh!) I think I finally fell asleep curled up on the exam table..hehehehe He finally comes in and likes the way the incision is healing, we talk about the pain in my left abdomen/pelvis from his removal of the spermatic cord and moving things around.
Things are light hearted and then they took a more somber note, when he said I have good, bad, and bad news. The good news is that pathology report showed that the tumor in my testicle was indeed a seminoma. First bit of bad news was that I had two types of cancer. Not only was it a seminoma, but it was mixed with a teratoma, with some necrosis noted in the pathology report. As an aside, the ultrasound showed that there were actually 2 mass in my testicle, one was 3 x 1.9 x 2 cm and the other was 1.7 x 1.5 x 2 cm, of this seminoma/teratoma mixed cancer. The other interesting thing to note here is that the blood work showed only elevated levels of the tumor markers LDH, the levels of AFP (alpha fetal protein) and hCG (human chorionic gonadotropin) were both normal. This usually is indicative of just a seminoma, with other types of testicular cancers they usually see increased levels of AFP and hCG, well just goes to show you I'm not normal.. but heck most of you already knew that!
Now the final bit of bad news has been the hardest one to digest and still trying to process all the implications. The CT scan showed that the cancer had indeed metasized to my abdomen. There is a 6 cm mass. The cancer has traveled up the lymphatic system to its favorite site and has grown there in the retroperitoneal space between my left kidney and aorta. At this point, that was the only mass seen, there was no infiltration to other abdominal organs or the lungs. Right now I'm classified as Stage IIC (this is due to the size of the metasized mass). The survival rate for this is like 95-98%
So what does all this mean? Well it means that I had something for a bit longer than I thought! LOL as well it means that I get to endure the joys of chemo therapy. Right now I have to heal up from the surgery, and then I see the oncologist on Feb 26th. It is then that I find out what the plan of attack is to kill those renegades who have infested my body, as well as what form of chemical warfare will be used, and all the lovely side effects. More on this topic after I see the oncologist in a couple weeks.
Must admit that I feel like crap right now, what had started off seeming so positive, has definitely taken an unexpected turn. Am still trying to process things mentally and damn if it's not kicking my ass at times. I know now, which has helped with the fears of the unknown that were plaguing me before, but damn.. didn't want to know this!! Not going to let this change me from the optimistic person I am, but just taking longer than usual for me to deal with this and that's killing me. The other aspect is that I feel so out of control, I can't do much at this point and so much is in the hands of others. Those that know me know how I thrive on being in control, and having that control.
Ok, so that's the latest and some of you are going, Holy Crap!, others are probably a bit shell shocked, and some are going f'ing cancer and let's nuke that tumor. Well trust me when I say I that I've already been and continue to go through that range of thoughts/emotions.
How can you help? Well keep the thoughts and prayers coming, those are very welcomed, much appreciated and valued. So many of you have called, written and offered to help in any way, and truly wish that I could take everyone of you up on your offers! Right now I think the best help is going to be keeping the girls busy with play dates/sleep over's. And then when the chemo starts, I'm sure some meals on wheels would help out Marnie so she does not have to figure out what to make for dinner every night (usually my job! LOL). For me right now, helping Marnie and the girls is going to be the biggest help for me. I worry about how this going to affect them. At times I'm scared of failing them, being that 2% and leaving them. I know that I have to take things day by day, but damn my mind is going a mile/minute, analyzing this angle, that angle, what are the possibilities of this/that, effects, etc. and everything is a bit over whelming right now.
So trying to sort it all out, devise a strategy, fix some milestones and then execute to perfection!
Tuesday, February 10, 2009
Amazed at the Response
WOW!
You all have just been so fantastic with the emails, thoughts, prayers and offer of helping hands. Can't even keep up with all the messages and respond to each one individually. I am trying to get better about responding individually going forward from here.
So today is Tuesday morning (Feb10th) 4 days post surgery and I'm finally weaning myself off the heavy pain meds. Actually got up and showered yesterday, so that was refreshing and shaved this morning, so feel some what human again. Most of the pain I'm having is localized on the left side of my abdomen around the incision site and further up around my kidney, were the Doc removed the spermatic cord. I can stand for about 30 minutes right now before it starts throbbing, so just trying to slowly increase that. Mentally I'm raring to go and my head is clearing from the fog of the Vicadin, physically I'd say I'm about half way there, but making some steady progress.
Am actually going out of the house today to have my chest X-ray (one of our many offers for someone to help out, getting a ride there, not driving myself!) and get the contrast for my CT scans. The CT scans of abdomen and pelvis are scheduled for tomorrow afternoon 1445. Then if things are going better, going to try and try and get a couple half days in at work Thursday & Friday, that will be a see how things going kinda thing. Friday I see the Dr. again and he should have the results from the CT scans and hopefully the pathology from the surgery, so at that point we'll determine the next step in this adventure.
Marnie and I were talking and thinking back over the last few months and wondering if this hasn't been in me longer than we thought. We were thinking back over the last 6 months at the few time that I had these little unexplained 'flu' bouts. Were I would spike some high fevers and then it was mostly over in 24-48 hours. That same thing happened the day that Dr. Lailas examined me too, so my supposition is that his examination caused the tumor to release something into me that my body was fighting. Thinking back it is possible that this has been going on for a bit longer and the symptoms are all very similar. Regardless, gone now, but still food for thought and will be interesting to see going forward.
Well hope that each of you is doing well, and know that I'm slowly getting back to normal and just taking each day one at a time.
You all have just been so fantastic with the emails, thoughts, prayers and offer of helping hands. Can't even keep up with all the messages and respond to each one individually. I am trying to get better about responding individually going forward from here.
So today is Tuesday morning (Feb10th) 4 days post surgery and I'm finally weaning myself off the heavy pain meds. Actually got up and showered yesterday, so that was refreshing and shaved this morning, so feel some what human again. Most of the pain I'm having is localized on the left side of my abdomen around the incision site and further up around my kidney, were the Doc removed the spermatic cord. I can stand for about 30 minutes right now before it starts throbbing, so just trying to slowly increase that. Mentally I'm raring to go and my head is clearing from the fog of the Vicadin, physically I'd say I'm about half way there, but making some steady progress.
Am actually going out of the house today to have my chest X-ray (one of our many offers for someone to help out, getting a ride there, not driving myself!) and get the contrast for my CT scans. The CT scans of abdomen and pelvis are scheduled for tomorrow afternoon 1445. Then if things are going better, going to try and try and get a couple half days in at work Thursday & Friday, that will be a see how things going kinda thing. Friday I see the Dr. again and he should have the results from the CT scans and hopefully the pathology from the surgery, so at that point we'll determine the next step in this adventure.
Marnie and I were talking and thinking back over the last few months and wondering if this hasn't been in me longer than we thought. We were thinking back over the last 6 months at the few time that I had these little unexplained 'flu' bouts. Were I would spike some high fevers and then it was mostly over in 24-48 hours. That same thing happened the day that Dr. Lailas examined me too, so my supposition is that his examination caused the tumor to release something into me that my body was fighting. Thinking back it is possible that this has been going on for a bit longer and the symptoms are all very similar. Regardless, gone now, but still food for thought and will be interesting to see going forward.
Well hope that each of you is doing well, and know that I'm slowly getting back to normal and just taking each day one at a time.
Saturday, February 7, 2009
The Day After
Goodness,
Thank you all for the thoughts, well wishes and prayers. Got home Friday afternoon (Feb 6th) and was pretty looped from the narcotics and other pain meds they gave me. But a dull ache most of the day. Finally was able to eat some food later that evening (and kept it down the second try! LOL)
Ended up sleeping in the recliner, and awoke this morning feeling very sore, but semi-lucid, so thought I'd write. They went in through my abdomen, like a hernia surgery on the left side and took out it out from the inside along with most of the spermatic cord. The Dr. was pleased with the surgery and it went well. He also liked that the spermatic cord looked and appeared normal. The other encouraging factor at this point was just before surgery he told us that they had gotten the results of the blood work from Thursday night backed. Based on the levels of the tumor markers, it appears that my cancer is a 'seminoma'. We are waiting on the pathological examination of the removed parts at this point. More information can be found here (http://en.wikipedia.org/wiki/Testicular_cancer)
So I have to treat this as if I had a hernia operation at this point. No heavy lifting for a couple weeks, and stuff like that. Have the CT scans scheduled for Wednesday afternoon now, and those combined with the pathological report, should have some more direction towards the end of next week. Still just taking it one day at a time.
Thank you all for the thoughts, well wishes and prayers. Got home Friday afternoon (Feb 6th) and was pretty looped from the narcotics and other pain meds they gave me. But a dull ache most of the day. Finally was able to eat some food later that evening (and kept it down the second try! LOL)
Ended up sleeping in the recliner, and awoke this morning feeling very sore, but semi-lucid, so thought I'd write. They went in through my abdomen, like a hernia surgery on the left side and took out it out from the inside along with most of the spermatic cord. The Dr. was pleased with the surgery and it went well. He also liked that the spermatic cord looked and appeared normal. The other encouraging factor at this point was just before surgery he told us that they had gotten the results of the blood work from Thursday night backed. Based on the levels of the tumor markers, it appears that my cancer is a 'seminoma'. We are waiting on the pathological examination of the removed parts at this point. More information can be found here (http://en.wikipedia.org/wiki/Testicular_cancer)
So I have to treat this as if I had a hernia operation at this point. No heavy lifting for a couple weeks, and stuff like that. Have the CT scans scheduled for Wednesday afternoon now, and those combined with the pathological report, should have some more direction towards the end of next week. Still just taking it one day at a time.
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