Thursday, November 29, 2012

Reflection

Two years ago today we found out that Tim's cancer had spread to his lungs. We went into that appointment thinking that perhaps it was back in a lymph node or maybe there was the remote chance that it had spread to his liver but nothing could've prepared us for the shock to come. That day ended up being the biggest turning point of my life.

When Tim was initially diagnosed in January of that year I knew it would be a tough road ahead for a few months, maybe a year or two but then we could put all of this behind us as a bump in the road. I thought that years from now we'd look at this as some terrible nightmare and chalk it up as a life lesson. Now I know so much more as Tim will be on chemo for the rest of his life or until they find a cure for cancer (which they are getting closer and closer to each day).

We've learned how to interweave chemo into our routine  and how to prevent it from being a hinderance from living our lives. We've learned that some days we just have to stop, let everything continue around us and take it all in, feel sorry for ourselves and just be. We've also learned that we can't live life with this constantly in our heads and feeling sorry for ourselves, we have to pull ourselves back up and keep pushing forward just as hard the next day.

I've learned lots of humility and patience (although I still have a ways to go with that one) as well as that sometimes I can't be in control of every little detail (my OCD is constantly fighting that lesson though). I've learned to let go of the little things because in the grand scheme they really don't matter and that the little drama of what others may think or how my actions may be perceived are insignificant. What really matters is how I make others feel.

Tim & I have learned to give and take in our relationship. We've learned so much about each other, what makes the other tick (and the best way to get under each other's skin) as well as how to support one another through the worst circumstances life has to offer. He's learned that sometimes he has to take my opinion into consideration and I've learned that sometimes I have to let him make his own decision, completely independent of what I think, even when every bone in my body screams against it.

We've learned what a tremendous gift it is to have a network of support and how it really can make a difference to your soul to know that there are so many out there praying for success. We've learned of the generosity of our community and the kindness of strangers, people are inherently good in this world. We've learned just how much our friends and family truly mean to us and what a pivotal role they play in our lives, especially in the darkest of days. We've also learned how much it means when someone reaches out to let you know they are thinking of you just as you've reached the end of your rope.

Two years ago today, when we found out Tim's cancer had spread he asked what it meant in terms of how much time he had left. The answer was that statistically, two years was the length of time. I know Thanksgiving was a week ago but today I'm thankful that statistics are just numbers. I couldn't be more thankful that Tim is here and he is thriving. Don't get me wrong, I still worry about what could be every single day but I know he is surrounded by an amazing medical team and a tremendous network of friends, family and even strangers that give him the ability to keep fighting day in and day out. For that I am so very thankful.

Monday, November 5, 2012

Round 2

I am halfway through my second round of Vectibix.  We took some precautions before I started this cycle to try to limit the severity of the rash on my face. Not only does it look bad but it feels like I have a severe sunburn.  So far the rash hasn't been too terrible. The real test for this will come next weekend when Steven and I go to Chicago for the Bears game.  The last time that I went up there the wind was so bad that it really dried my skin out and made the rash much worse than it normally is.  Steven has told me that we might be going to the Bulls game on Saturday night as well.  I had a great time the last time that I got to go up there and looking forward to it again.

I have also decided to make a career change.  After four and a half great years with Lee & Associates I have decided to make a change to go and work with my brother doing financial planning.  I can't say enough nice things about the people at Lee and how great they have been to Jenny and I over the past couple of years.  It was a tough decision for me to leave Lee because they have been like a family to me over the past couple of years, but I am excited to get the chance to work along side my brother and the chance to have benefits such as me being the one carrying the health insurance takes a big load off of Jenny finally. I also will have some disability insurance finally which I hope I never need but I know it has been a big source of stress for Jenny over the years. If anyone missed the original story, I was scheduled to have my physical for my disability and life insurances the day after my colonoscopy. Obviously they found the cancer during that colonoscopy so the insurance wasn't happening.

Other than starting my second cycle of Vectibix and changing careers not much has been going on in Jenny and I's life.  Things have been pretty calm, and I am not complaining about that.  Jenny has been pretty busy at work with PropertyBoss moving into a new building.  There were some issues that has made that situation a bit more hectic than it should have been but they seem to be settling in well and the building looks really good. Saturday we went and hung out with my brother, Haley and the kids and had a pretty good time before I started feeling bad and today I was feeling better so Jenny made me clean the deck with her and tomorrow we get to stain it after work. If anyone wants to take my place, feel free.

The Brightlife / iTOR house is continuing to move forward and should be framed out by the middle of next week.  I will go by there and take a couple of pictures to post on here so everyone can see the progress that has been made.

I hope that everyone has a great week.

Tim

Thursday, October 18, 2012

It Begins

The past 2 days have shown the first side effects of Tim's new treatment. I really think the preventative steps we took helped as it took almost a week for this to show up and it still isn't bad at all. You have to know what you're looking for to actually notice the rash but Tim is getting uncomfortable. Feeling as though he has a sunburn on his face and his head burns a bit. We need to get his special shampoo again which should help a lot with his scalp. As much as he hates the rash Tim keeps saying how much better it is than the hand and foot syndrome he was previously dealing with.

His nurse, Lynn, called me before Tim started treatment to say that if we wanted pictures together we needed to do it then. We haven't taken any together since our wedding (2 1/2 years ago) so I got in touch with our wedding photographer Olivia Griffin. She very graciously agreed to fit us into her schedule at the last minute for a day she typically reserves to spend with her family and we are so grateful. I know everything she does is pretty fantastic so she may even be able to make us look good. :)

Tonight we went to dinner with my grandma, two of my cousins and their son at Open Hearth. Grandma had a little fall about 3 weeks ago which gave her a fractured arm, some stitches in her hand & forehead (both removed now) and some bruising. Not only is she now doing just as well as she always has but she also saw a man she taught back in the 60s who still recognized her, hoping I got those Miller/DeVenny genes!

That's about it in our world, pretty slow week for us (that's a good thing). It takes awhile to see if the meds are working and the first round of bloodwork usually shoot the numbers way up (which is always a bit disconcerting) but I'm anxious to start seeing some good results and hope we actually get some this time. Until then we're just taking it a day at a time and keeping life as normal as possible.

Izzy Powell, the baby of our friends Landon & Allyson, seems to be finally heading in the right direction. Please still keep them in your prayers as she still has a long way to go for a full recovery.

Thursday, October 11, 2012

Updates

Tim did a great job but left a few things out I thought I'd share. Most important is that part of our decision of what direction to take ended up pretty much being made for us. Dr. O'Neill recommended Tim stay the course with the Regorafenib for two reasons, one being that although it wasn't necessarily working it was slowing the growth of the cancer, the other being that if Tim got off of the trial there were no guarantees that he could get back in if the Vectibix didn't work. Most of the trials we had to choose from either had the possibility of a placebo (no thanks!) or had Vectibix. We decided to take Dr. Edenfield's advice and go with the straight Vectibix for Tim as it leaves more doors open to switch faster if the Vectibix doesn't work.

We left for Charleston after making that choice but still not completely at ease with our decision. When we got down there for Tim's discharge we found out that the Regorafenib had received FDA approval the day before at 11:40AM which means his time on the trial was short-lived anyways. It takes about 2 weeks to get the drugs to market which means it should've started to hit the shelves today. It's a huge relief to know that it's accessible to Tim now should he need it.

This week got a little crazy as Tim's chemo was scheduled then was rescheduled but he finally ended up receiving treatment and now everything has finally calmed down...for now. We're on alert to start looking out for signs of the rash coming back. This time we started preparations in advance with going to see a new dermatologist (Tim's previous dermatologist has since retired). He's an awesome guy and is very proactive. He started Tim on some creams & antibiotics so hopefully it won't get out of control again. He's also given us instructions to call and come in the same day we notice the rash starting to flare so he can see it in all of its "glory."

I've seen some really great articles on colon cancer recently, I even saw a great one called "Gut Check" in the most recent edition of Real Simple. It's good to see that message getting out there.

There is one particular post I saw this week though that really struck a chord with me. My friend Liz turned me onto a blog called The Wellness Warrior recently. This week they made an awesome post about being empowered through cancer and it speaks to a lot of things I've grown to believe over the past few years: http://www.thewellnesswarrior.com.au/2012/10/a-letter-to-my-fellow-cancer-friends/

One final thing that's actually the most important of all. Some friends of ours, the Powells, have been going through some pretty terrible circumstances lately. Landon was on the baseball team with Tim at Carolina and I've been lucky enough to get to know he & Allyson over the past few years. Recently Allyson gave birth to twins Ellie & Izzy, luckily Ellie is doing well now but Izzy had to be taken up to Ohio for more specialized treatment of what they believe may be an extremely rare disease called HLH. She's been starting to improve over the past few days but her liver counts today were not where they need to be so tomorrow this tiny baby will have a liver biopsy & bone marrow sample taken at 1PM and possibly need to have chemo. Please keep Landon, Ally & Izzy in your prayers as well as their other two children, Holden & Ellie through what I can only imagine is an impossible time right now. Here is the link to their Facebook page to follow their story: http://m.facebook.com/pages/Prayers-for-Izzy/495219343830343?id=495219343830343&refsrc=http%3A%2F%2Fwww.facebook.com%2Fpages%2FPrayers-for-Izzy%2F495219343830343&_rdr

Wednesday, October 10, 2012

Back at it

I have officially finished my first round back on Vectibix.  It is much easier to have it alone rather than being paired with 5-FU.  The side effects haven't started yet but I have been preparing for a little over a week for them.  I wish that there was more to talk about concerning the actual chemo, but it was rather normal. I'll be on just this for awhile until we figure out if it works or not then we might add 5-FU back in as well. If it does work I'll be on this until it stops working or something new & promising comes along. We're really hoping its the second option rather than the first.

This past weekend I went down to Columbia for the USC game (yes the USC no matter what the football coach in Pickens County says) and tailgated with a few old teammates.  It was cool to be able to see David, Kevin, Brian, and Matt again.  Kevin and David won the tailgate package from the golf tournament last year so we tailgated with Rusty and the rest of the Courtyard crew.  David and I went into the game together and it was one of the loudest games that I have been to.  USC (yes again for the coach in Pickens the real USC) played one of the best games I have seen them play.

We have some of Jenny's friends coming up to stay with us this weekend for Fall For Greenville, so it will be another eventful weekend.  Carolina also plays LSU Saturday night so hopefully they can keep the unbeaten record intact.

We also were able to announce today that Goodwin-Foust is building a Brightlife/iTOR showhome which will be ready in the spring. We don't have a lot of details yet but it is going to be a in new neighborhood off of Hammett Road called Greywood at Hammett.  We are really excited and flattered that they have decided to do this as well as how amazing all of the vendors & partners have been. If you're in the market for a new house this spring, keep this one in mind, its going to be pretty incredible from everything we've heard about it so far. We will share more details as we get them.



I hope that everyone has a great weekend.

Tim

Sunday, September 23, 2012

Back from Visit

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

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.