I figured that we needed to switch things up and let me write a post, since I haven't done that in a while. Before I get into the actual reason for posting this I will talk about our weekend after the meeting with the doctor. We stayed at The Carolina Inn in Chapel Hill and it was an amazing hotel, Jenny was actually able to get it for us on Priceline for way under half of what it usually costs. It was opened back in 1924 and it was beautiful. On Thursday night we went out to dinner with Jenny's high school friend Megan and her boyfriend, Ed, to a place called Top of the Hill. It was a rooftop restaurant with great food and atmosphere. We got up and walked around the town for a bit since we didn't need to head back over to the doctors office for anymore tests before heading to Columbia. We got to Columbia late in the afternoon on Friday and went out to dinner with Jenny's friend Jen. We went home early since we were both tired from all of the driving and we had to get up for the game the next day. We got to the fairgrounds around 1:00 and made our way around to a couple of tailgates before me and my dad went into the game. The crowd was pretty good and it is always a great day when USC wins and Clemson loses on national tv. I know that was a quick recap but I figured that most people wanted to read the next part of this post.
As you all know Jenny and I made the trek up to Chapel Hill this past Thursday for out appointment with Dr. O'Neal. We into town at around 3:15 and I got a call from Dr. O'Neal's office asking if I was in town yet to come on over and we can meet with him a bit early. We headed over we were able to get right back to the back to see him. We sat down and went over everything that has happened since I was last up there in Dec. of 2010. Talked about the different drugs I have taken, the results of my most recent scans, and the results and patterns of my last CEA tests. After everything was mentioned on our side we sat back expecting to hear him say the exact route that he would want us to take.........This did not happen. While he told us about the pros and the cons of each path (chemo) that we could take, but never said this is what you need to take. The pro about staying on the current drug (regorafenib) is that the tumors don't seem to be growing fast and this drug, and who knows what another drug would be able to do. The con about getting of this drug is that since it is still in trial phase I wouldn't be able to get back into the trial if we can't find something else that works better, I would have to wait until it comes on the market (likely by the end of next year at the very latest).
He also mentioned 3 different clinical trials that he has currently at his center. One of these consists of a placebo, which at this point I don't want to do because of the fact that I might not get the actual drug. The other two are both with 5FU which I have had in the past along with one of the drugs that breaks my face out. I am all for one of these but I am not sure I want to drive to Chapel Hill every other week to get treatment, although if that's what has to be done I'll do it.
I guess that we are at a cross-roads because there are options out there but its tough to figure out what to do but no matter what path we choose I will beat this thing in the end, it is just the steps of getting there that are difficult. None of these options will make my life easy by any means because there are always going to be side-effects. Do I want to go back on Vectibix and have the stuff on my face or do I want to stay on Regorafenib and not be able to walk for about 2 weeks out of the month?
The process has not been fun but it is the way my life will be for the near future. I know that most of the time I seem like everything is good and it doesn't affect me (which is really the case) but this does take it out of you. But as weird as this sounds I am glad I am the one going through this and not someone else. I have a great support system and doctors that have my best interest at heart and I feel positive we will make it to the other side of this. I want to thank everyone for saying their prayers for us as we have and will keep going through this, its really helped a lot, I hope you'll continue to keep us in your prayers as we go forward. I hope to see everyone soon.
Tim
Sunday, September 23, 2012
Tuesday, September 18, 2012
A Tiny Bit of More Information
Not much has changed since my last post, we do know that Tim's appointment in Chapel Hill is at 4:00 on Thursday so we will head that way Thursday morning and plan to stay until Friday just in case there is something available up there that they need him to do more testing for. Otherwise there really is no change in anything.
We do feel so grateful for all of the support we have received from you all, your friends, family members, co-workers, blog followers and acquaintances. The sheer number of people that have viewed Tim's blog over the last few days is humbling to say the least. It means so much to us that people care enough to share his story with others who are all coming together to root for him. He is my entire world so knowing that so many people are praying for him really helps me to push through each day.
As for us we've been on the same routine as usual, last week our dog had some surgery to remove a bump on her ribs so we've been busy taking care of her, going to the game in Columbia, spending some much needed time with great friends and just working to keep our daily routines in order to keep life as normal as possible while we wait to find out what will come next. The only difference for me being that I cringe every time he coughs knowing now that its likely being caused by the new lymph node lighting up in his chest. I'm so anxious for that to begin to fade as to me it will mean whatever the new treatment is will be doing its job. Tim is still as happy and positive as he always is which is so inspiring for me to watch, we may differ on our opinions as to the latest results but we're both committed to watching him beat this disease.
We also really appreciate all of the tremendous offers for help but honestly I couldn't think of anything tangible that we need if I tried, but everyone is so generous to offer. We still need lots of prayers for the right medicine for Tim, whatever it may be, and please continue to pass along his blog and his story to others you may know. More than anything I want him to be the exception to the rule of the statistics over the next few years. My opinion is that the more people who know his story, the more can pray for him which is never a bad thing.
We do feel so grateful for all of the support we have received from you all, your friends, family members, co-workers, blog followers and acquaintances. The sheer number of people that have viewed Tim's blog over the last few days is humbling to say the least. It means so much to us that people care enough to share his story with others who are all coming together to root for him. He is my entire world so knowing that so many people are praying for him really helps me to push through each day.
As for us we've been on the same routine as usual, last week our dog had some surgery to remove a bump on her ribs so we've been busy taking care of her, going to the game in Columbia, spending some much needed time with great friends and just working to keep our daily routines in order to keep life as normal as possible while we wait to find out what will come next. The only difference for me being that I cringe every time he coughs knowing now that its likely being caused by the new lymph node lighting up in his chest. I'm so anxious for that to begin to fade as to me it will mean whatever the new treatment is will be doing its job. Tim is still as happy and positive as he always is which is so inspiring for me to watch, we may differ on our opinions as to the latest results but we're both committed to watching him beat this disease.
We also really appreciate all of the tremendous offers for help but honestly I couldn't think of anything tangible that we need if I tried, but everyone is so generous to offer. We still need lots of prayers for the right medicine for Tim, whatever it may be, and please continue to pass along his blog and his story to others you may know. More than anything I want him to be the exception to the rule of the statistics over the next few years. My opinion is that the more people who know his story, the more can pray for him which is never a bad thing.
Friday, September 14, 2012
Results
I've been putting off writing this post as I really just don't know what to say. I've finally decided I might as well just tell the truth, it will give you a little idea as to how Tim & I's viewpoints vary in the circumstances we encounter.
First the facts, on Wednesday Tim & I were both pretty nervous as we knew we'd be meeting with Dr. Edenfield Thursday morning but were anxious as we still hadn't been given a hint of what the results were. Typically we at least have some sort of idea as to what to expect, good or bad. This time we knew something had changed but had no clue if it is severe, not a big deal, etc. Tim called up to the cancer center and got a call back around 3:30 from Dr. Edenfield. He told him that the nodules in his lungs have increased slightly and that an original lymph node that previously lit up but we never knew if it was cancerous or responding to injury from Tim's very invasive abdominal surgery, was slightly enlarged as well as a lymph node under the point where his bronchial tubes split. We then met with Dr. Edenfield yesterday morning to review the scans in person and to discuss next steps. It seems like the majority of his lung nodules are on the periphery of his lungs but they are becoming a little easier to spot now. I have to admit that my heart still skips a beat and I have a slight panic attack each time I see those scans and mistake a blood vessel for a tumor until Dr. Edenfield points out the actual locations which are much harder to see.
Tim has officially been pulled from the Charleston trial but for the next two weeks he won't be on any meds at all in order to give his feet and hands some time to heal before we move on to something else. He really has been to hell & back with those things. To give you an idea basically by the end of a treatment his feet are covered in blisters which heal over the off week but also peel off during their healing process leaving fresh raw pink skin. That new skin ends up developing into new blisters during the next round and the cycle perpetuates getting a little worse each time.
Next Thursday we will be going back up to Chapel Hill to meet with Dr. O'Neil again to get his opinion on what we should do next as well as just to check-in and see what he may have to offer in terms of trials or treatments. The Friday after that we will travel down to see Dr. Geils & Debbie one last time for Tim's discharge out of the trial program. A previous program Tim did with the Vectibix may be our next try but we aren't sure if he has been off of it long enough for it to begin to work again, it's the one that worked pretty successfully before and gave him the rash on his face and upper torso.
Now for what this means & how Tim & I differ in opinion on this. Tim is happy with the results, he had feared that there was more of a spread than what happened or that it had spread to his liver or any other major organs. I, on the other hand, am pretty scared for the fact that it has moved out of his lungs and, significant or not, is in locations it hasn't ever been in or hasn't been in for almost 2 years now. I think his words say it best:
"Am I happy that I have 2 insignificant lymph nodes pop up or that some of the spots are a bit larger. No, I am not, but I won a battle in the sense that it's not in another organ right now. My feet and those problems really have me down and frustrated but now that I know this wasn't the drug for me I am ready to move on and start fighting again. These little breaks I get are very important to me because they let me be normal again even if it is for only 14-20 days. If you think about it I am not normal for probably 200 days in a row and those days are when I feel like I can have fun and sit back and breathe for even just a second.
Ultimately neither of our opinions really matter as the important thing is that we do find a treatment that starts working as soon as possible. I will say though, that I am so proud of him. Throughout everything he is such an amazing fighter and so much stronger than I could ever hope to be. Admittedly there are many nights where he is comforting me rather than the other way around. If I had my way we wouldn't be dealing with this at all but since that is not an option, I am so grateful that Tim is the one I'm going through this journey with.
We're both still holding out hope for a miracle drug to get rid of all of it so we can start living our lives with some security instead of this roller-coaster ride we can't seem to get off of. I think out of everything that has happened and how much our lives have changed over the past (almost) 3 years now, that is what I miss most of all. As many of you know I'm super OCD and a big planner, needless to say I've had to adjust my approach to the world over the past few years (which hasn't necessarily been a bad thing all the time) but I'm really just ready to be able to plan a vacation 6 months ahead of time without the concern of whether or not it may end up falling on a chemo week.
I've texted a few friends to let them know what is going on and the most common question has been "What can we do to help?" What we really need more than anything else right now is for lots of prayer for Tim that the right drug will be used next. I think both of us (as well as our families) need some stability and, though none of us have lost hope that a cure will be found soon, stability could go a long way in giving us a better sense of security and refreshed sense of hope. So please pass Tim's name & story to others you may know, prayer groups you may be a part of or if prayer isn't your thing just send good vibes, happy thoughts or whatever it is that you do believe in Tim's way. We'd be so grateful.
Tim & Jenny
First the facts, on Wednesday Tim & I were both pretty nervous as we knew we'd be meeting with Dr. Edenfield Thursday morning but were anxious as we still hadn't been given a hint of what the results were. Typically we at least have some sort of idea as to what to expect, good or bad. This time we knew something had changed but had no clue if it is severe, not a big deal, etc. Tim called up to the cancer center and got a call back around 3:30 from Dr. Edenfield. He told him that the nodules in his lungs have increased slightly and that an original lymph node that previously lit up but we never knew if it was cancerous or responding to injury from Tim's very invasive abdominal surgery, was slightly enlarged as well as a lymph node under the point where his bronchial tubes split. We then met with Dr. Edenfield yesterday morning to review the scans in person and to discuss next steps. It seems like the majority of his lung nodules are on the periphery of his lungs but they are becoming a little easier to spot now. I have to admit that my heart still skips a beat and I have a slight panic attack each time I see those scans and mistake a blood vessel for a tumor until Dr. Edenfield points out the actual locations which are much harder to see.
Tim has officially been pulled from the Charleston trial but for the next two weeks he won't be on any meds at all in order to give his feet and hands some time to heal before we move on to something else. He really has been to hell & back with those things. To give you an idea basically by the end of a treatment his feet are covered in blisters which heal over the off week but also peel off during their healing process leaving fresh raw pink skin. That new skin ends up developing into new blisters during the next round and the cycle perpetuates getting a little worse each time.
Next Thursday we will be going back up to Chapel Hill to meet with Dr. O'Neil again to get his opinion on what we should do next as well as just to check-in and see what he may have to offer in terms of trials or treatments. The Friday after that we will travel down to see Dr. Geils & Debbie one last time for Tim's discharge out of the trial program. A previous program Tim did with the Vectibix may be our next try but we aren't sure if he has been off of it long enough for it to begin to work again, it's the one that worked pretty successfully before and gave him the rash on his face and upper torso.
Now for what this means & how Tim & I differ in opinion on this. Tim is happy with the results, he had feared that there was more of a spread than what happened or that it had spread to his liver or any other major organs. I, on the other hand, am pretty scared for the fact that it has moved out of his lungs and, significant or not, is in locations it hasn't ever been in or hasn't been in for almost 2 years now. I think his words say it best:
"Am I happy that I have 2 insignificant lymph nodes pop up or that some of the spots are a bit larger. No, I am not, but I won a battle in the sense that it's not in another organ right now. My feet and those problems really have me down and frustrated but now that I know this wasn't the drug for me I am ready to move on and start fighting again. These little breaks I get are very important to me because they let me be normal again even if it is for only 14-20 days. If you think about it I am not normal for probably 200 days in a row and those days are when I feel like I can have fun and sit back and breathe for even just a second.
Am I happy that I will be feeling shitty for 3 days out of 14 again, hell no. But that is my life right now and it will be for the foreseeable future. I guess what I am saying is that when I say I am happy about the results, that is what I mean."
We're both still holding out hope for a miracle drug to get rid of all of it so we can start living our lives with some security instead of this roller-coaster ride we can't seem to get off of. I think out of everything that has happened and how much our lives have changed over the past (almost) 3 years now, that is what I miss most of all. As many of you know I'm super OCD and a big planner, needless to say I've had to adjust my approach to the world over the past few years (which hasn't necessarily been a bad thing all the time) but I'm really just ready to be able to plan a vacation 6 months ahead of time without the concern of whether or not it may end up falling on a chemo week.
I've texted a few friends to let them know what is going on and the most common question has been "What can we do to help?" What we really need more than anything else right now is for lots of prayer for Tim that the right drug will be used next. I think both of us (as well as our families) need some stability and, though none of us have lost hope that a cure will be found soon, stability could go a long way in giving us a better sense of security and refreshed sense of hope. So please pass Tim's name & story to others you may know, prayer groups you may be a part of or if prayer isn't your thing just send good vibes, happy thoughts or whatever it is that you do believe in Tim's way. We'd be so grateful.
Tim & Jenny
Tuesday, September 4, 2012
Not What We've Been Hoping For
Friday was another one of Tim's Charleston appointments, they put him back on the full dose after having to hold, then reduce it last time with how bad his feet got. That was great news, unfortunately we also received some other not so great news as well. Tim's CEA has doubled over the past month. Both Dr. Geils & Dr. Edenfield are pretty confused as to what is going on & why it would have reacted in that manner. Regardless, Tim will be having a CT Scan this week and hopefully in the next week or two we should have a better idea about what's going on and at some point after that we should know what the next steps will be. In the meantime we just get to wait again, which for the lack of a better word, sucks.
Please keep Tim in your prayers for a drop in his CEA & that the cancer hasn't spread additionally or grown over the past few weeks.
Thanks,
Tim & Jenny
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