IndyGO

Indianapolis... Until we were told Jarod would have to come Indy I never had new anything about the city other than the COLTS play football from here.

The last time I posted information we had just found out information on the fact Jarod needed additional treatment, that was a full 11 days ago so please allow me to explain how and why and we are here.

Jarod originally had multiple lymph nodes that were infected he underwent treatment (chemotherapy for 9 consecutive weeks) after out patient surgery.

2 of the original lymph nodes after chemo showed abnormalities that our doctors at Piedmont said need to be looked at. From the beginning of Jarod's diagnosis we have been consulting Dr. Einhorn (Lance Armstrong's oncologist). Dr. Einhorn said in his opinion they need to be removed and our doctors said who do you recommend? Dr. Einhorn's response was Dr. Stephen Beck who is a urologist who specializes in testicular cancer and more importantly is the "guru" in the particular surgery Jarod will be having called RPLND - located in Indy.

It was never an option for Jarod and I to come to anyone but Dr. Beck. RPLND stands for retropertinaial lymph node dissection. This surgery is very invasive requires procedure that opens Jarod's abdominal cavity from the sternum to the 2-3 inches below the belly button. They set aside his intestines and then examine the lymph nodes that are "abnormal" and then see where those abnormalities might travel. Once identified they removed the nodes that may or pose a threat, remove them run pathology which takes 48 hours to get back, and then put him back together. Based on the pathology Jarod may or may not required additonal chemo.

From the time they take him back to the time he is out of recovery is 8 hours. Jarod's surgery is scheduled for Thursday July 1 at 9:00 am and he will not be out of recovery until 5:00 pm.


Right now the doctors estimate his recovery to be 4 days in the hospital, 3 days out of the hospital. This puts us as being released on Monday July 5 and flying home on Thursday July 8.

The people I have been a personal assistant for Sue and Mike have purchased Jarod's and my round trip flight to Indy back to Atlanta. Both Jarod and I are on a full leave from work and are so grateful to have wonderful places to go back to.

Tomorrow we meet with Dr. Stephen Beck and will go over all of our pre and post surgical procedures. Jarod's Mom Marcy flew out with us today and will be with us until Tuesday July 6. My Mom will be arriving Thursday for the surgery and staying so she can take us to the airport on the 8th.

The past 10 days preparing for this 10 day trip has been more than overwhelming. Both Jarod and I truly thought the worst was behind us and when he finished chemo we really did think we were over the hump. After 2 abscesses that needed to be drained and Jarod's severe joint pain we really thought each day would be better.

Well we aren't going to sugar coat it when we got the news that the lymph nodes were not normal it was SHOCKING. We both had a very hard time dealing with it. The chemo we just spent the last 3 months going through was to prevent the surgery we are getting ready to under go. Everything we have been so grateful for, our doctors in Altanta, being in our own bed, no over night hospital stays and being so close to family and friends all the sudden feels like a problem.

Just the fact our doctors have put us in the hands of doctors outside of our state took it to another level, but at the exact same time I feel so blessed that our doctors have enough compassion and awareness that the best option for Jarod is outside of their capabilities - to where we are today.

Today we are Indianapolis. We arrived around 4:30 on a plane with Marcy. We checked into our room and it is so nice! We are in walking distance to everything! This city is gorgeous!! All the buildings are historic and we just walked to and from one of the best steak dinners ever St. Elmo. Marcy (and Cleo even though he isn't here) gave us an amazing meal in a beautiful setting. We are in downtown and feel super safe, better yet the hotel is only 1.2 miles to Jarod's hospital and will allow us to walk to and from in this beautiful city daily.

We are here enjoying each moment of each day as we have done since we found out Jarod required this surgery. We just spent 2 wonderfully relaxing days with my mom and then 2 more days with many many of our friends. We are so grateful of the support from friends and family and know it will continue.

This surgery we are tired, we are exhausted and challenged to talk on the phone, but we do appreciate the support, thoughts and prayers of all of you. I will try to update when possible this is the best way to keep everyone informed without having to repeat.

I will let you know how Jarod's comes and again thank you!!!!!!!!!!!!!!!!!!!!!!!! It does not go unnoticed or unappreciated regardless of how long it takes us to get back to you!!! It really is appreciated!!!!!!!!!!!!!!!!!!!!!!!!!

Best wishes and greatest thanks to each one of you!!

Love,

Lindsey & Jarod.

Cancer Sucks!

Well I guess I'm back on the blog train!

Jarod had a CT done on Tuesday and we got the results last night, his CT showed 2 nodes in his abdomen that are still large. Our oncologist has been working with Dr. Einhorn in Indiana from the beginning (Lance Armstrong's doctor). He has seen Jarod's scans and has recommended that Jarod meet with Dr. Stephen Beck the number one urologist in the country for this type of surgery.

The nodes are most likely benine but a benine tumor can became cancerous and so the recommendation is to remove them. This is a rare surgery that requires expertise in the area so we will be going to Dr. Beck's office in Indianapolis to have the procedure done.

His office will be getting the entire file on Jarod Monday of next week. They will review it over about 3 days and then call us to discuss the procedure.

The following week we will be traveling to Indiana on Tuesday June 29, meeting with the doctors Wednesday June 30, having surgery July 1 and hopefully if all goes well we will be headed home Tuesday July 6.

This is very upsetting news but we have the best of best behind us and so we know we will be OK. Please keep us in your thoughts and prayers.

I will try to update this as things develop.

Monumental May Day

He did it!! Jarod officially finished his last treatment of chemo today May 24 at 12:00 pm! Marcy came up and drove both Jarod and I to our last day day of treatment. Dr. Filip had the path report back from all the tests from Friday and everything was fine! He scheduled an appointment for us on Thursday June 10 for his follow up. That day we will then schedule the CT scan and his port removal. He told us we will get the entire post treatment schedule on June 10 but that the first three months he will be monitored monthly, then it will go to every 3 months for the first two years. After the 2 year mark he will only need to see him every six months and after after the 5 year mark it will be a yearly checkup!

Although we will still have a lot of appointments and check ups over the next two years, it is a huge relief to have this part of it, the chemotherapy treatment behind us. 12 weeks from the time he was diagnosed we have under gone 2 surgeries, 9 weeks of chemotherapy which consisted of 4 chemo drugs, 6+ anti nausea meds, and at least 3 other medications to help with sleep, and anxiety and in just the last 72 hours have over come an infected abscess and true excruciating joint pain. Going on less than 4 hours of sleep almost nightly for almost 3 full months Jarod and I are able to look back on this journey and say we did it!

It's almost surreal when you think about the obstacles we faced, and the amount of time, and every second of every day balancing work, home, bills, family, friends, and battling for Jarod's life; we just did it. We took it day by day and there wasn't any other option. You get up, you show up and you do what you need to do to get through the day, and then the night, and then the week, then the weekend, and then you start it over and you just keep going.

Friday when we were at the hospital, just a few days before I had written about how we were so blessed with only one treatment left and there was such a positive feeling and then 48 hours later I found myself sitting in the exact waiting room in the hospital I had been in when Jarod had gone for his very first CT. Before he was even diagnosed I sat in that waiting room outside of radiology worried, stressed, scared, and knew without yet being told what was going on. After that CT we walked over to Dr. Filip's office on a Thursday after all the other patients were gone and nurses were finishing up and he sat us down and told us that Jarod had cancer, that was 12 weeks ago.

12 weeks to most goes by in the blink of an eye, life moves so fast with work, school, friends and family, holidays, vacation, obligations and relaxation to most 12 weeks is a moment, but for us it's been a year. Sitting in that same waiting room, in the same chair I thought about what we had done, how far we had come and much it took out of us and I'm not sure how we've done it but we are SO close to the end I'm not going to look back.

We made it and 72 hours later here I am, at home with Jarod and chemo is behind us. We aren't looking back and we aren't hoping to go back to who we were or where our lives used to be, we are focused on moving forward and redefining ourselves and our lives post cancer.

Each experience we have prepares us for the next, the problem is we never know what the next is going to be. There is a quote that says, "You cannot control the wind, but you can adjust your sails" I think that's exactly what we did with the help of all of you who have supported us. Thank you.

The finish Line...

After that long day on Friday, Jarod and I crashed at 9:00 pm and I woke up every 4 hours to make sure he was taking his antibiotics, pain meds and other medication he needed. We slept until 11:00 am Saturday morning. When we got up Jarod started complaining of really not feeling well, he said it was a different feeling than he had been having and that it felt like one of the medications was making him feel strange.

He was extremely sick, dizzy and we knew something was wrong, we called Dr. Filip and explained the systems. Jarod was having an allergic reaction to one of the antibiotics and he told us to stop taking them. He asked how we was doing as far as fever, pain, new symptoms. I told him that he didn't have a fever the pain was less severe and the cut from his abscess was sore but the pain was different. He felt that because these symptoms were improving and because he was going to see Jarod in less than 48 hour he wouldn't put him on any more antibiotics. He told us that if Jarod starting running a fever we would have to take him to the ER right away.

After the drugs got out of his system he started feeling better, we even drove over to Erika and Jason's to see their new renovations on their home. We didn't stay long but it was nice for him to get out. Why we were there Dr. Filip called back and and said, I have some good news!

He said, "I have spoken with Dr, Einhorn and we agree Jarod needs to finish up his Bleomycin treatment on Monday May 24, but that would conclude his chemotherapy. There is no need for his 4th cycle."

He said he wanted us to know right away because he knew Jarod was having a very difficult few days. He asked again on his progress and I told him he continued to do much better and that the joint pain seem to be getting under control. He said well because he seems to be improving I think I know what has caused him to have that kind of agony.

One of the main symptoms of infection is join pain, like fever and Jarod developed an infection in the tissue around the colon, in the lower part of his body. The chemo drug cystplatin that I have had him on during the long weeks causes your body to make blood 7-10 days later which would be the exact amount of time since his treatment last Friday. In addition to that, there is range of CC's of chemo you can administer given the patients situation and strength. Jarod has been so strong since the beginning of this I have continued through out each dose and each week to give him the maximum dosage in hopes of getting his levels down fast enough to save him a month of chemo. It worked! Jarod now only has 1 treatment left and the high quantity of chemo killing his blood causing lower body pain, his body trying to keep up and make blood in his bones also causing joint pain was sent to the level of agony in his joints due to his infection. It basically was the perfect storm but he has gotten through the worst of it and we are headed down the hill to the finish line.

Tomorrow will be our last chemo treatment. We will leave at 9:00 am we will get all the results from his blood work and schedule all of his post treatment appointments as well as get the protocol for monitoring Jarod as he enters remission!

Turning Point

Well since my last post we have had some turns in our path. On Wednesday Jarod's pain worsened and he had a hard time getting down the steps at his parent's house. Thursday afternoon when I went down to go to dinner with Marcy and Cleo and Jarod, he said his tailbone was hurting in addition to his knee and leg pain, he was even having a hard time moving around.

After dinner we came home and tried to go to sleep, around 3:00 am the pain was bad enough that he was wide awake and at 3:30 am we both were wide awake he was in agany. The pain was so severe he was having shortness of breath and trouble moving and it took until 5:30 for him to calm down enough to sleep. I got up at 7:30 and then at 8:00 am I called the doctor. He called back around 8:45 and he was at the hospital by 10:00 am

They wanted me to bring him in Dr. Filip wanted to look at him and see whats going on. They found a cist that looked infected near his tailbone. This was due to a depressed immune system and had caused a localized infection. He eneded up having to be taken back by a specialty doctor and have it drained and then they put him on anitbiotics. They gave him a demeral for the pain and proceeded to do several sets of blood cultures and a contrast CT to look at his port to see whats going on. The port is OK it just has a portion of skin that is beginning to heal over it and so it's unable to draw blood from it, but they can infuse fluids and chemo into it.

The cultures won't be back until Monday and we won't know anything else really until then. He had no significate issues that were cause for admission to the hospital and it doesn't appear as of now the joint pain is caused by an infection, which is good. Dr. Filip sent him home for now and told us to call him if anything worsens he is on call over the weekend. They were conserned that Jarod could have an infection from his point which jo

The antibitoics should help with the cist he had, and Dr. Filip will let us know if anything comes back over the weekend we need to know about. Right now Jarod is a little less pain, very sore from being stuck 12 times and being cut, and very very tired. We are hoping that the joint pain will be reduced with pain killers and rest and that there are no other issues.

He has had a very tough week, when we saw Dr. Filip we wanted to see what his thoughts were about Monday being his last treatment and he wouldn't discuss that with us until Monday and he also wanted to make sure nothing comes back from these tests today.

We will let you know if anything else happens, hopefully his pain will decrease we will have a calm and restful weekend and good news Monday.

The beginning of the end of the battle...

Last week was Jarod's seventh total week of chemo and his 3rd long week consisting of 5, 6 hour days. He did well on Monday and Tuesday.. but as I mentioned in my last post Wednesday was a bad day... he felt horrible pretty much the rest of the week. Cleo his Dad came up to sit with him on Friday and our great friends Chad, James and Jon Newman came into town from Asheville to help me out.

James got to our house just before Jarod got home from the hospital he took care of him and the dogs (Georgia and Sampson) until I got home from work it was really nice for Cleo to get home before traffic hit and for me to know there was someone there. He went to bed early Friday and I also went to sleep fairly early sleeping very well knowing there was someone else in the house. Saturday Jarod even made it out to the pool for 3 hours!!We had lunch he spent some time in the shade but he did REALLY well. After dinner he started feeling bad and got back in to bed.

Saturday evening on he's been pretty sick. Monday we went back for his 8th week - just the bleo he felt good enough to eat some real food so we had a nice lunch and dinner but he was extremely achy both Monday, Tuesday and Today. His body hurts and the chemo that is in his veins makes him feel like he is on fire at times. He is very exhausted and trying really hard to fight the side effects that's he's experiencing. They drew his levels for the tumor markers and we got them back the AFP is at 4.7 and the HCG is less than 2.

This mean technically he is in the normal range and the tumors are gone. Our doctor needs to consult with Lance Armstrong's doctor who developed the treatment plan before he gives us the green light on everything but... it looks like next Monday will be Jarod's last day of chemo! We are EXTREMELY excited. Yesterday was a big day to get those levels into the normal range.

We won't know until late this week or early next what this exactly means, as far as being in remission, protocol for moving forward, all we know is that from what we have been told thus far these levels indicate that more than likely next week is week 9 and it appears 9 weeks will do it! No need for 12!

We will keep you posted as we find out more but we believe this is the beginning of the end of this battle!

Thanks to all of you who have called, sent gifts, cards, notes and emails it is very much appriciated. Please continue to keep us in your thoughts and prayers as we continue to finish up the treatment, under go surgery to remove the portocath, and begin the slow process of recovering and redisgning our lives to move forward.

Love,
Lindsey & Jarod

The harder the battle.. the greater the victory

We started round 3 of chemo on Monday. We knew going into it this was going to be a tough go at it, most likely the worst so far. We were very blessed to have had such a great last week! Jarod felt wonderful ALL week he worked on his outdoor kitchen and put in 2 drawers. We have my mom in town Thursday followed by a wonderful weekend with Friends on Friday and Mother's Day weekend in Newnan Saturday and Sunday.

Jarod got to spend some quality time with Cleo on Saturday and Marcy, and her sister Pam and I went shopping. Cleo fried turkey bites - which were from the last turkey Jarod killed for dinner and we went to bed decently early having a great night of sleep! Sunday Jarod grilled stuffed pork chops on Marcy and Cleo's new grill and they were fabulous! We came home around 4 to get ready for our long week.

Both of us were nervous about this week because the last long week had been rough. Monday he did OK and Tuesday he was even a bit wired from the steroids but then Wednesday it really started to head down hill. Marcy and Pam were with him and our nurse Kimberly who we all love is on vacation so another nurse was trying to get Jarod's port accessed, they were having a TON of trouble and finally stuck him in his wrist vein which blew out and then they used the other wrist to get a vein. Jarod was very upset because having chemo administered through your vein directly as opposed to the port in his chest is much harder, it hurts and burns and is awkward to be hooked up to through your wrist for 6+ hours. He was pleading with Dr. Filip if there was anything they could do and he went to get another nurse who tried the port one more time and finally they got it.

They day went on each hour he was getting more and more drained, Marcy and Pam took him home where he got into to bed for nap. After a bit a sleep he was up and the vomiting started right before I got home from work. We got it under control and he ate a small amount of food for dinner, and headed straight back to the bed. He was nauseous all night and we were up taking medication and trying to keep it at bay until about 4:00 am, finally at 4:30 we feel asleep and 7:30 I got up to get us ready for chemo.

Today hasn't been much better for him. Both of us are exhausted and we had trouble getting out the door this morning, but they were able to access the port much better today only took a few tries. He is sleeping and has been off and on since we arrived at 9:30 which is great. Although this is the worst he has felt he isn't vomiting all that much considering and he is able to sleep some which helps.

We got the levels back yesterday and the HCG is still normal and the AFP is down to 6.1, Dr. Filip will consult with doctor in Indiana next week to confirm we only need 3 rounds we are praying it is only 3 and this is his last long week. One of my friends had colon cancer at 26 and just celebrated 5 years cancer free, she called and left me a message reminding me the sicker he gets the better it works and when you are able to put it behind you, it feels like you conquered the world!

It's working, we are blessed to have the markers that remind us that this fight and these drugs are going to be worth it because once we get through the treatment he will be in remission and we we WILL be OK.

Thanks for all cards, thoughts, prayers, visits, gifts and calls we couldn't be more overwhelmed with all of the support.