Latest Update

I feel like I always start these blogs out lately with "I'm sorry that I haven't updated this in a while", but I really am.  I have been feeling really good lately.  I am still having the breathing issues but it has made me so mad and frustrated that I am now walking 30 minutes in the morning and then after I finish lifting weights in the evenings I am on the treadmill for another 20 minutes doing high intensity interval training.  I am hoping that I can train my lungs to learn how to take more oxygen in again.  After 2 weeks of this I am feeling like I am gaining a little bit of it back.  The only problem is that I start another round of chemo tomorrow which means I will have to take about 4 days off before I try this again.  Hopefully it won't hold me back too much.

In the last 2 months I have been seeing a pulmonary doctor and he thinks that part of the issue with my breathing is that I have developed a slight case of asthma due to the effects of chemo.  This along with some inflammation and the scar tissue on my lungs from tumors is what is causing the breathing issues.  I now have an inhaler that I use twice a day and also an emergency inhaler that helps me get through my cardio and workouts.

I had another CT scan last Friday and got the results back yesterday showing no change from the last scan.  This is great news yet again and hopefully this will continue to be the trend going forward.  The scan did show what looks like inflammation that wasn't visible on the last scan, so I have started a regimen of steroids to see if they help at all.  If this does feel like it helps, then I will do another scan in about 3 weeks to see if the inflammation has gone away.  We have also confirmed that my CEA counts are no longer useful for us to monitor the cancer progress so I will now have to have a CT scan every 8- 10 weeks.  Obviously you don't want that much radiation as it can cause other types of cancers but at this point there are no other options to monitor what is going on.  I have a feeling that I will be on this same chemo for about another 2 - 6 months and then we will have to switch to another drug.  If we change in 2 months then that will be a year and 8 months of me being on the same drug and that is an amazing amount of time to be able to stay on the same drug when you are in the situation that I am in.  On top of that I have had the drug every other week in that time frame with only taking an extra week off twice.  So, taking a new drug will be a welcome for me.

In the meantime, Jenny finished up her spring classes and started right into a 6 week Biochemistry (cross between chemistry and organic chemistry) class. That finishes up for her Friday but for her to get financial aid she had to take two classes this summer and she didn't have any nursing classes as options so her introduction to criminal justice class started last week. She also finished up with her job at the end of April so she could begin school full time so she will have a break during July before that starts. I'm still working full time and working as often as I can on chemo days.

We also got a contract on our house a few days after the tournament and closed on our house last Thursday and moved out last Friday. We still haven't found a replacement yet but our good friend Jennifer Van Gieson has been very patient and helpful with us trying to find it. In the meantime we've moved in with Jenny's parents. We keep joking that we're in the biggest trial of our marriage thus far, a queen sized bed.

I want to congratulate a good friend of mine that I met while they she was going through chemo as well and just found out that she is now in remission, she showed a great amount of courage while taking this disease head on and I'm really happy for her. Another fellow chemo patient is scheduled to have surgery this coming Tuesday to hopefully remove all of the cancer that is left inside of her.  So I ask for everyone to please say a prayer for them to have safe travels and the best of results from the surgery.

I hope that everyone has a great week and a great start to summer.

Tim

It's Here!!!!

I am like a little kid on Christmas Eve today.  When I was younger I would stay up basically all night waiting on Christmas Day to finally get there.  Who am I kidding I still do that to this day.  Tonight (Sunday night) is going to be the same thing.  I get so excited each year for this event to come.  It is like having our Wedding Reception each year.  I get so frustrated putting it together because it is so much work to pull it all together, but we have such a good time that all the frustration is worth it. This year we have a full house with 4 of Jenny's sorority sisters, 3 of their husbands and two of their babies staying with us. We love it.

We had some amazing help this year putting it all together.  So I wanted to say another thank you to Ali Jackson, Berkley Casazza, Megan Zapf, Alan Jones, Erin Harvey and my brother Steven.  They have made all of the stress that we normally go through much much easier.  They took the bull by the horns and really helped us this year.

On the cancer side of things for me, we haven't really updated the blog since my last scan.  We found that there again has been no significant change in the tumors and the cancer has not moved back into my pelvis as we were afraid of.  That was a great thing to hear.  I was actually a little bit nervous about getting the result from this scan, but it turned out to be great news.  Unfortunately we still don't know what's causing the swelling in my leg or my shortness of breath & coughing. The plan now is for me to get a little bit of a break from chemo, so I wont have my next round until Wed. April 30.  There was a chance that I was going to change drugs but with the results of this scan being positive we are going to stay on the same regime for a while.  I will continue to get a break every 3 months just to let my body rest.  The thought is the break will give my body time to recover from being on chemo 33 out of the last 67 weeks.  Even to me that is a long damn time!

I hope to see everyone at the event tomorrow.  Hope you've had a great Easter.

Tim

Don't forget to buy your tickets!

I know I owe you all an update but life has (once again) gotten in the way. I did want to make sure all of you remembered to purchase your BrightLife tickets as today is the deadline. Tickets can be purchased here: https://brightlife.ticketbud.com/2014-tee-it-up


Below is a list of the auction items we will have up for bid & we still have more coming in!

Experiences:
BMW Pro-Am VIP Experience
Caesar's Head Mountain House Week Vacation
Carolina Baseball VIP Experience
Charleston Golf Getaway including a stay at the Marriott, Golf for 4 at Bull's Bay and Dinner for 4 at Hall's Chophouse
Chicago Bears Pre-game Field Passes & Tickets to a Regular Season game
Clemson Baseball VIP Experience
Disney Vacation Package
Greenville Staycation including a room at the Hyatt, dinner at Sassafrass & brunch at Roost
Jared Emerson Painting (to be auctioned after his live performance at 6:45)
Kismet Photography Engagement or Bridal Portrait Session
2 tickets to a home Notre Dame game
Member for a day experience at The Reserve
Palmetto Olive Oil Tasting for 10
Pawley's Island Ocean Front Beach House Week Vacation
Thomas Creek Brewery tasting for 10 and limo service from Eastside Transportation
Tickets to the grand opening party of Whitney & Bryan's new Charleston restaurant as seen on Bravo's Southern Charm
USC vs. Furman Field Passes
Wade Hampton Club round of golf with the President
Wells Fargo Tournament passes for 4 to all 4 rounds

Sports Memorabilia:
Bill Haas Signed Flag
Bill Haas Signed Scotty Cameron Tour Edition Putter
Blake Bortles Signed Football
Bridgestone Tour Bag
Bridgestone Limited Edition Masters Stand Bag
Clemson Football Team Signed Football
Dabo Swinney Signed Death Valley Print
NASCAR All Star Race Tickets and Pit Crew Uniforms
NASCAR mini-helmet signed by Richard Petty, Dale Jarrett and Jamie McMurray
NASCAR Sonoma Raceway print signed by Kurt Busch, Ricky Stenhouse, Jr., Danica Patrick, Denny Hamlin, Jamie McMurray, Ryan Newman & Kasey Kahne
NASCAR Sprint Cup Official Race Suit & Hat with Winner's Circle bottle of champagne signed by Rusty Wallace & Richard Petty
Ryan Succup Signed Football
Stitch Headcovers

Dressed to Impress:
Dress from Megan Masters Designs
Dress from Southern Frock
Polos, Hats & Croakies from Southern Tide
Shoes from the Kristin Cavallari collection for Chinese Laundry
Sweater & Necklace from Trunk 13
Tory Burch Beach Bag & Sunglasses from Monkee's

For the Little Ones:
Gamecock Dress for Baby Girl
Vann & Liv $75 gift card

For the Home:
PTP Tools Lithium Ion Driver Kit
PTP Tools Lithium Ion Combo Kit

For the Belly:
$50 to Green Room

For Relaxation:
Body Bronzing & Eyelash Tint from He & Me
Full Service Cut & Color from He & Me
Microdermabrasion Facial from He & Me
Signature Massage from River Falls Spa
Women's Haircut & Blow-out from He & Me

Sign Up ASAP!

More information to come on everything we've learned so far this week and what next steps we're planning to take but also wanted to include this email we're trying to get around as we're a little further behind in dinner sign-ups than we usually are and just want to get the word out ASAP! (I'm sure my english teacher aunt & grandmother are cringing at that run-on sentence)

On a different note, thank you for your support, your prayers and all you've done over the past few years. Life has been a little rough on us lately but knowing we have so many people that care about us really helps to ease our burdens! I'm running late for class (& have a paper/test to study for tonight) but am hoping to have some time tomorrow morning to finally give everyone a proper update.

Hey there –

It's hard to believe that the fourth annual BrightLife Tee It Up For Cancer event is less than a week and a half away.  This year’s golf tournament, dinner and silent auction is being held at Thornblade Club on Monday, April 21 and proceeds will again be donated to Greenville Health System’s Institute for Translational Oncology Research (iTOR), an organization that provides advanced cancer research right here in Greenville.  Thus far, with your help we've been able to raise over 75,000 for this cause over the past three years!

While the golf is filled, we are still hoping to get more registrations for the dinner and silent auction before Monday, which takes place from 5 to 8 p.m.  Tickets are only $20 and open to everyone, even those not golfing (if you are golfing or the guest of one of the golfers, your ticket is included in the golf price already, all sponsors also receive two tickets).  Kids under 5 are free and children of all ages are welcome. The silent auction list is growing with some really awesome items and experiences with a range of prices to fit any budget.

We will also have Jared Emerson performing live at 6:45 p.m. and if you haven't ever seen a performance, it is one that cannot be missed. His painting will even be auctioned off after the conclusion of his performance.

To sign up simply visit this link: https://brightlife.ticketbud.com/2014-tee-it-up

We’d love to see you and any guests you can gather to join us at the dinner and silent auction and if you've already purchased your ticket, Thank you!  Dinner/silent auction registrations are down a bit for this year, so if you don’t mind, can you please share this information with any of your family, friends, colleagues or other acquaintances in the area that may like to participate?

Thank you for taking the time to read this novel of an email.  We really appreciate your support with BrightLife over the last couple of years and hope to see you on April 21 at the event.  If you have other questions or need more information, let us know.  Thank you in advance for helping to spread the word to some of your contacts, as well.

Best,

Tim & Jenny

Back in the ER

Between my school, our respective jobs and prepping for the BrightLife tournament we haven't had a moment between us to spare over the past month although there has been a lot happening. Tim is still on the same treatment but the breathing issues have continued and between those and how exhausted/burnt out he is plus how much of a beating his body has taken over the past four years we decided it would be best for him to take a few weeks off of chemo so last week was his last treatment until the end of April. During this time we're also looking into some new options to see if he is eligable and if they are good options for him. 

We're at the point where there are no longer any standard protocols for treatment so clinical trials are our only options. As he has had so much and so many different drugs he is only eligible for Phase One trials which are trials more in their infancy. We're still working to learn the ins and outs of all of this but to my current understanding this is both good and bad. Bad in that these are not drugs that have been thoroughly tested through  multiple levels of trials. That does mean that Tim gets faster access to drugs though. In addition he is watched MUCH more closely for possible side effects and complications. Newer drugs are also much more targeted than traditional protocols so side effects are lessened a bit and we have a better chance of finding something that actually makes advances in getting rid of the cancer versus just keeping it under control. Unfortunately we also run the risk of trying something that doesn't even slow down growth but frankly that is a risk that we encounter with every drug tried on Tim. It's always an inner struggle to accept moving to a new drug but we'll never find a cure for him if we don't. 

We had another trip into the ER last night due to some mysterious swelling at the top of Tim's thigh. He isn't in pain and it doesn't look infected but there were some concerns about him having a blood clot. He had an ultrasound this morning where they determined he was clot free so now it's a matter of figuring out what the swelling is being caused by and how to treat it. We've been doctor hopping this morning and are hoping to have some answers in the next few hours, well update with more as we know!

Thanks!

Bronchoscopy Results

Tim's been through enough procedures at GHS now that we feel like old pros but the structure of today was much different than any he's had before. We got to the hospital right at 6:30 and were actually the first ones in the business office which is usually fully packed out. With them having everything on file already we got checked in really quickly and after a quick stop for some coffee for me, headed up to the bronchoscopy/hyperbaric lab. It's really small, as in they only have one procedure room and one space in the recovery room (which is shared with the hyperbaric chamber). Tim's had some hits and misses with getting people at GHS trained to access his port so he went to the cancer center Thursday to get accessed which made the prep really fast. He even got to keep wearing his socks and slippers which he was thrilled about.

The procedure went really quickly and Dr. Cochrane came out to tell me that Tim's bronchial tubes looked pink, healthy and no sign of the cancer in them. That was a huge relief to hear. He went on to say that he believes the persistent cough is from a combination of allergies and Tim's reflux so we're going to try some new medications for awhile (which have already been helping some just in the week he's been taking them) and take it from there. 

Post procedure Tim was watched by two nurses until he began to wake up from his Versed induced haze. One blueberry muffin for him later we were headed home for the remainder of the day which Tim pretty much slept through although he did provide some entertainment throughout including when he accidentally wrapped himself from head to toe in a blanket while he was sleeping quite literally mummifying himself.

We were really blessed with great nurses for Tim today and a twist of fate actually had us meeting with Dr. Cochrane last Friday due to scheduling conflicts with the doctor Tim was originally referred to. He was incredibly patient, listened to every detail, question and concern we had, was upfront about every possibility he thought could be the cause as well as the background for each and gave us ideas as to how he'd approach each possibility. The rest of his staff was just as impeccable & caring in their bedside manner and couldn't have made it a better experience. We were both so grateful to have such a great & knowledgable team helping Tim.

Even with the good news today there are still a good many hurdles moving forward:

1. We have to find out if a reaction Tim had to his chemo last week was a one time occurance and we're reaching the end of being able to use that.

2. We have to evaluate all options for what the next steps are. Tim's been on this same chemo for over a year now so we know that there is a finite amount of time that the cancer will continue to be controlled by it as well as that his body will continue to tolerate it. We need to start seriously investigating the possibilities that have been thrown around and prioritize what the next step will be as well as what the steps after that could be. Dr. Edenfield is great about making sure that there is always a Plan A, B & C at any given time.

Many have asked how much longer he will be receiving treatment and to be blunt, it's until his body/he can no longer take anymore or until a cure is found. This is now the red-headed stepchild of our little family of 3 (our dog Maddy is Tim's golden child) and we consider lack of growth of the cancer along with Tim being healthy year over year as wins in our book.

3. We have to find out why Tim is getting out of breath so easily. This is the scariest prospect for me, so long as it is something that can be overcome or reversed it's doable but I know one of the things that has kept Tim so successful is how active he's been and how he doesn't look sick therefore people don't treat him as though he is sick. The idea of the possibility of some of the activities he loves being taken from him scares me but this is something we'll be waiting a few months to get the answer to. 

CT Scans expose you to an incredible amount of radiation and Tim has had a lot of scans already in the past four years so we opted for him to get the special CT needed to check for scarring of his lungs fm the chemo/tumors at the same time he gets his next scan to check for tumor growth in order to minimize additional radiation exposure. 

I know we say it often but we're really grateful for the thoughts, prayers, emails, texts, calls, notes, etc., etc. Each Time we've entered a situation that seems impossible and shared it, there is a sense of peace and tranquility I have gotten. The waiting game that we seem to constantly be playing is miserable and it only gets worse before procedures such as the one today. That peace and tranquility is a much needed respite in the insanity of everything else going on and wouldn't be possible without the prayers of many so once again, thank you.

Here We Go

By the time most of you are reading this Tim should be heading back for his procedure this morning. Once they get him under anesthesia the procedure should only take about 30 minutes and will hopefully give us a non-serious reason for his unending cough. As of right now we're both tired, anxious and uncaffinated but one of those three will be remedied for me soon, I'm sure the drugs will remedy all three for Tim. 

I'll probably wait until Tim is lucid enough for the two of us to talk over & process the results, whatever they may be so there may not be a post from us right away. In the meantime if you wouldn't mind sending up a quick little prayer that we do get results today (coming out of a procedure like this with more questions than answers is pretty hard) & that those results end up being something insignificant. Thanks in advance, it really does make a big difference for us!