Friday, February 27, 2015

News - Undetermined

We have news. It is not good news but it's not necessarily bad news yet either. It's just news. Chad had his colonoscopy today. Prior to being taken in for the procedure, the doctor informed Chad that the PET Scan revealed possible activity in the colon, which was news to us because we were told it was all clear with the exception of an area around where his gallbladder used to be. Needless to say, this made the hour I had to wait absolutely excruciating. I had never actually received a written copy of the PET Scan results so I asked Yolanda (Dr Sardi's coordinator) and she, like the angel she is, brought me over a copy. She also gave me a much needed hug and reassurance.

The report did mention mild activity but that it could simply be related to bowel movements. However, I am sad to report - Chad did have three polyps removed from his colon.

One was low and very small and not of concern. The other two were large, one 10 mm and one 15 mm. They have been sent for pathology and they put a rush on it, in hopes that they can get the results for Dr Sardi on Monday.

The doctor who removed them was excellent and he did say he was very confident that they were benign. If anything, the largest one may be pre-cancerous but we will not know until the results come in. Chad will have to have regular colonoscopys every three years now but you know what? That's fine. Because he is going to be around for at least another 40 years, so if that's what he has to do - that's what he'll do.

We have friends coming to see us tonight/tomorrow. So we're going to do our best to enjoy these next 36 hours before the big surgery on Monday. Continued prayers are appreciated. xo

Thursday, February 26, 2015

Hello Baltimore!

We arrived in Baltimore yesterday, as planned. We cut it close in making the flight but alls well that ends well. Chad was very nauseous on the flight and didn't feel well last night. It is so difficult to deal with because one doesn't know if it's the cancer or something else. It could've been a bad reaction to the antibiotics or breakfast or his gallbladder (or lackthereof). Any number of things. But when you have cancer hanging over your ever waking moment, it's emotionally draining.

Tomorrow is the colonscopy, then we get to live normal life for one more day before the fun hospital stuff begins. Chad, as usual, is taking everything in stride and just being the soldier that he is.

This was Chad last night. Sprawled on the bed with the laptop streaming the Kentucky Wildcats play basketball! The man bleeds blue :) You can take the boy out of Kentucky but you can't take Kentucky out of the boy!

Monday, February 23, 2015

One Week

We are seven days away from the 'big day'. One of the most common questions we've received is "How long will you be there for?"

The answer is "That Depends." There are a few scenarios that may come into play. For those who may have tuned into the story late in the game, Chad's cancer (like most of this type) was found 'by accident'. He was getting his Gallbladder out, and as an afterthought the doctors decided to take his appendix out because it looked 'murky'.

It was only once the biopsy was complete, did we know there was cancer. There have not been any further surgeries so we don't actually know what we're dealing with and won't - until they open him up.

With this type of cancer, it is usually found in Stage 4 - once the appendix has burst. What then happens is the cancer cells and spread throughout the abdominal cavity. Imagine a salt shaker, if you will, shaking cancer cells all around.  Because of that, this cancer becomes very tricky to treat and the chances of recurrence are very high because regardless of the surgery, it is difficult to remove all of those cancer cells that have been shed.

Receiving this type of a diagnosis is never a positive thing but once you accept that it is what it is, you have to deal with the facts and form a game plan.

So the first bit of good news we received was Chad's appendix did not burst. The doctor also said when he was in there, he seen no evidence of any other tumors. Granted, he wasn't 'looking' for them but he also said it is not something you would miss.

The second bit of good news was that his blood work (Tumor markers) were all well within normal range.

The third bit of good news was that the results of his PET/CT Scan showed nothing of concern. There was some activity around where his gallbladder used to be but they figured that was surgery related. (By the way,  a biopsy was also done on the gallbladder and it was free of disease)

One area of concern was that, since they didn't know they were dealing with cancer - when they cut the appendix, that they may have cut through the tumor and spread some cells. A second microscopic biopsy was done on the area where the appendix was removed and there was no evidence of malignancy and it was tumor free. That was our fourth bit of good news.

It is difficult to consider any of it good news but in comparison to what it could have been - we'll count our blessings.

So with all that considered - We don't know how long we'll be there because we don't actually know what we're dealing with.

The plan is to commence with a laproscopic right hemi-colectomy. When Dr. Sardi performs that he will test the lymph nodes and have a look around.

Scenario One: Best Case (What we're praying for) - The lymph nodes test negative for cancer. There is no visible sign of cancer. Dr. Sardi sews him back up. He is in the hospital for 3-5 days. Then we wait in Baltimore for a follow-up appointment.

Scenario Two: The lymph nodes test positive for cancer. It can be anywhere from 1-18+.  At this stage, he may or may not proceed with opening him up fully and doing HIPEC.

Scenario Three: Upon opening him up they do see cancer cells that have spread. They would then open him up, complete a cytoreductive surgery, followed by HIPEC. (Heated Chemo therapy, swirled around in his abdominal cavity for 1.5 hours) If this is the case, his hospital stay would be 14 days + and then an additional week in Baltimore waiting for the post-op meeting.

So in short - we could be there two weeks, we could be there eight weeks. Obviously, we're on our hands and knees continuing to hope and pray for more good news. Preparing for the worst, hoping for the best.

Chad has the sniffles still and it makes me nervous. We've worked so hard to get where we are, I am terrified something will mess up the surgery.

Special Request: I will likely post this again later. I've always believed in God in my heart but this entire experience has revealed just how much He means to our entire family. Faith is an amazing thing to feel in your heart and propel you forward. So if you're religious and attend Church - please consider adding Chad and our family to your prayer lists. We believe in the power and prayer and would sincerely appreciate it.

Much Love

Saturday, February 21, 2015

Tick Tock

We're waiting on the clock! Chad's primary physcian with the VA once again stepped up to the plate. Chad had to get an EKG and some blood work done prior to the surgery so we went to the local VA Clinic. Fortunately, his doctor was in that day and somehow managed to squeeze us in. Long story short, we left with the medicine in hand that Chad required for his colonscopy next week! His local VA doctor has been a hero from the on-set and we're so thankful for him.

The bad news of the day is that Chad is sick. Brenden has been sick for awhile and as much as I tell Chad - he needs to avoid sick ones, he loves his kids... Unfortunately, now he's battling a cold. The doctor gave him some medications and we're praying it clears up within the next few days and doesn't interfer with the surgery.

I am anxious and nervous about the surgery on so many levels. My current fear is the insurance. I am still waiting on confirmation from Dr. Sardi's office that everything is good to go. In my heart, I feel it will work out but I'll be able to relax once I see it in black and white.

Other than that, it's a cold, wet and icy day here in Kentucky. Time to take it easy.

Thursday, February 19, 2015

Flight and Hotel Booked!

We are heading to Baltimore early so Chad can get his colonoscopy. It turned out the "Hope Lodge" wasn't very hopeful after all and was not somewhere where we could stay. To be completely honest, I found the woman who responded to my inquiries entirely rude and showed a dire lack of compassion.

Fortunately, a dear friend from SingSnap was able to get us a great rate at the same hotel we stayed in last time. I also booked the flights this morning which was entirely painless. Thank Goodness.

Today we travel to Mayfield for Chad to get some blood work and an EKG and try to figure out the bit about getting the colonoscopy medication in time for the trip.

It's funny as time goes on, the people who you thought were going to be your champions end up being absent when you really need them - even if it's just for advice or a strong shoulder. Fortunately, we still have so much support from some dear friends and family and we're using it to propel forward!

Watch out cancer - we're coming to get you!

Wednesday, February 18, 2015

It's Always Something

This time, a colonoscopy. Dr. Sardi wanted this procedure done prior to the surgery. We had it scheduled a few weeks ago but for one reason or another the VA decided to cancel it and not actually inform us. We found out about a week ago and have been trying to get it confirmed. 

We found out today that there is apparently no facility within a 100 mile radius that can do this prior to the surgery. Thankfully, the VA approved us doing it out of state - so it looks like we will be flying to Baltimore early to get it done there.

Only trouble is, the medication. The VA supplies their medication but it takes 7-10 days. Unless we can somehow pull off a miracle, we'll likely end up having to pay out of pocket for the medication. But that's fine - I would much rather pony up the cash for it than have to push the surgery date back.

With that said, this is just additional stress I really don't need at this time. I feel like I have the weight of the world on my shoulders right now and I don't know where to find the strength to keep standing.

But I will. I know I will.

As if Chad needed any more bad news, his uncle passed away yesterday. :( The viewing is tomorrow and the funeral on Friday. Chad will be one of the pallbearers which is going to be tough on him because he is decidedly not comfortable at all around funerals/death.

It's such an emotional roller coaster. Even the good news is bad because it's all about cancer. 

With all the depressing mumbo jumbo, I am still rejuvenated by the love and support of family and friends. It just seems like people keep coming through for us and it's moments like that that I draw strength from. So if you're out there and you've done something today that made a difference (You know who you are) - Thank-You. I hope you understand the impact you're having on our lives xo

Coming Soon: Reflections

Telling the Kids - I will dedicate a Blog entry to what it was like to finally tell the children everything that has been going on.

God and Prayers - I also want to dedicate an entry to something that has become very important to our family. We may not be the most religious people on the planet and despite receiving the awful diagnosis, I believe with all my heart that God is watching over us and that Chad is meant to survive this. Too many things have happened over the past weeks to ignore - that someone, somewhere - is watching over us, guiding us and giving us the strength to fight this. 

Tuesday, February 17, 2015

Today - We're Up To Date

I started this blog because I wanted to document the journey. People have asked for his story and all of it's different layers but it is hard to put it into words. I gave a rough and brief explanation of what we have gone through up until this point - some things I've skipped or messed up the order - but for the most part, the bones are there.

Now that I am 'caught up' - I will be able to give more in depth updates.

Here is a brief re-cap of what we have had to do, to get where we are.

- We received the diagnosis.
- We researched the disease, as painful and difficult as it was. It is paramount to educate yourself because you will be the best advocate you have.
- We reached out. To state congressman, cancer organizations, friends and family and the VA Advocacy office.
- We talked to people. I talked to as many people as I could; whether it be other patients, other representives in different VA's, chartible organizations. Whomever I could speak to that may have some information that could be important.

Some truly amazing people that I may not have included in my blogs yet;

Laurie Johnson Todd - The Insurance Warrior: A wonderful woman who has dedicated her life to helping others. She is a survivor of the disease herself and has committed her days to helping people get the help they need when faced with insurance difficulties.

Jeremy, Mark and Margie, Jen, Cindy, Kimberly (and the list goes on - All cancer patients who offered an ear, some advice, contacts and friendship. All who made an impact just by showing they care.

PMP Appendix Cancer Support Group - While it is difficult at times to read some of the struggles, people in this support group really understand what it is like to be dealing with a diagnosis such as Appendix Cancer and have already provided a wealth of information and comfort. 

Jim Smith - Commander Master Chief of Air Compassion For Veterans who provided our air fare to see Doctor Sardi.

The hundreds of people who have offered prayers, donations, love and support.  My boss Trevor McGuire (who is remarkable) my co-workers, Chad's boss and co-workers - the list goes on.

Our family; Oh I don't even know how I could have gotten this far without them. My Dad and Step-Mother Nancy, my mother - always a phone call away. They were there any and everytime I had news or needed to cry. They were my rock. They sent us money to help make ends meet, they sent us unwavering love, support, prayers... Chad's Dad and Step-Mother were amazing. Driving us to and from the airport, bringing home cooked meals (which was a bigger benefit than you can imagine while Chad was unable to move from the couch. i HATE cooking and they saved me and gave me a much needed break) Chad's mother, with emotional support, love and prayers. His sister Kristy, my siblings - even my baby sister donated some of her own money (It broke my heart in one way but made me so unbelievably proud of her in another)

I could go on and on about the love we have received but I will never be able to include everyone. My online family from SingSnap has been so absolutely amazing that it beyond blows my mind. I had friends offer and help with hotels, places to stay, transportation, - it never ends.

We are loved beyond belief and our gratitude is inmeasurable.

We know we have a long ways to go yet but we're trusting in God and doing everything we can to make sure Chad is getting the best care possible. I am still scared something will screw up between now and the surgery but I am going to remain optomistic and we'll get through this.

Chad is one of the strongest, most incredible people I know. If anyone can beat this - he can.

VA Approval - Part 3

Good Ole Ed Whitfield's Office

When we got home that night, we were once again feeling defeated. The drive home from St Louis was dreary and depressing but I reassured Chad, the best I could, that we had options and we're not giving up yet. I wrote Ed Whitfield's office again. We touched base with the advocacy office again. I had gotten the Chief of Surgeon's name from Dr. D and went so far as to write and fax him a letter.

The weekend came and went and we still had no news. I contacted the St Louis hospital again on Tuesday and eventually a woman got back to me and said she would check with Dr. D. That night I had a voicemail on my phone stating that she was going to go ahead and send a reccoemdation back to Marion, IL (Chad's VA hospital) stating our desire to see a specialist and all that. At this point, I didn't even know what that meant.

The next day we made a few phone calls and confirmed the referral was put in. We spoke again, with Mark Speers from the advoacy office and he confirmed this was a good step. He said that St. Louis was basically saying they could not do what was required. He said he would follow up with the Fee Base people personally and let them know about the case, that transportation and lodging was not required.

We hadn't heard anything Thursday, so we called again Friday. We found out from Mark that it had gotten approval on the Fee Base, it had gotten past the admin area and by Friday afternoon it was on the desk of the final person who had to sign off.

Monday was a holiday, so the earliest we would find out would be Tuesday. Needless to say - it was a very long weekend.

Tuesday morning arrived and I was laying in bed, resting my back (I threw it out a few weeks ago) when my phone rang. It was the VA asking questions about the surgery, who we wanted to see, etc., Long story short - his surgery was approved.

God answered another prayer and Chad is going to get to see Dr. Sardi in Baltimore. He is going to be treated by one of the best in the field - someone Chad completely trusts.

VA Approval - Part 2

We saw the delightful Dr. V on Friday. Saturday morning Chad received a phone call from him letting him know, he was going to go ahead and put in a consult for a Surgeon in St Louis. Chad thanked him and ensured that he did it quickly because we could not wait the 4-6 weeks as he told us previously.

We received a phone call Monday morning and had an appointment Wednesday, at the St Louis VA Hospital.

We arrived at the hospital. It was a really dirty and dingy place. Once we were taken into the room, a young doctor came in and asked us a bunch of questions. He was very kind and made us feel like we were in a good place. However, it turned out he was only a resident and was just doing the foot work for the actual surgeon. After waiting awhile, the actual surgeon (We'll Call him Dr. D) came in, with a total of four residents in tow. He sat down with his ego on display and told us with the same certainity that Dr. V had - that the VA would more than likely not support him seeing a specialist. That all Chad needed was a hemicolectomy and he was 98% certain there was no other cancer.

"Well Joy! If you say so! What did you say you were again? A surgical oncolosit? Oh no? Just a rectal surgeon? Did you ever have any patients with appendix cancer before? No, eh? Alright, what is your plan to actually address the cancer? Oh, you have none you say! So you're sitting here with my husband, Chad Cavitt - a cancer patient - and you have absolutely no plan what-so-ever to address the actual cancer component? Sure, I am an idiot. Where do I sign?"

I don't think so. Needless to say, tears were shed. Chad and I were both adamant that neither one of us were comfortable with his 'plan'. I once again, had to educate the doctor on this cancer and what it can do. I had to, yet again, explain how it spread, re-iterate Dr. Sardi's plan and explain that, should there be cancer present - someone who is intimately familiar with this disease and who has the necessary experience and facilities on hand, needs to be the one doing this surgery. 

We said we were hopeful he is right. We're hoping for the best. We're paying HIPEC isn't needed, that the cancer was caught early enough. However, this is his life we're talking about and we're not prepared to play Russian Roulette. In the end he conceded and said he would do what he could but if they asked him if he could do the surgery, he would tell them yes. He didn't pull any punches and said the odds were stacked against us. 

VA Approval For Surgery - Part 1 - Onocologst Consult

Now the tricky part begins.

Chad's only medical coverage is through the VA and we were told, by anyone who opened their mouth, that it would be very hard if not - completely unlikely, that the VA would approve surgery for a specialist or someone not within their network.

I had already scheduled a Consult with the VA oncologist prior to going to Baltimore. We got back to Kentucky Wednesday night, prepared for the consult on Thursday and then headed to Marion, IL Friday. The meeting with "Dr. V" was, by far, the most frustrating thing I have had to encounter for a long time. I am not going to waste too much time getting into specifics but to say the least, he was less than helpful. I had documentation, referral letters, recommendation from Dr Sardi, studies - everything you could image to help inform (and persuay) Dr. V to support us seeing a specialist. Once he seen the word "HIPEC" he all but shut down. He got obsessed with the fact that Chad had diarrhea, consider it may be linked to any number of other cancers and completely disregarded the fact that his diarrhea began once his gallbladder was removed. Dr. V would not look me in the eye. Every time I spoke, he looked at Chad. It was beyond frustrating.

He did conceed that Chad required surgery but he said he needed the hemi colectomy, not HIPEC. I tried to tell him, once again, if he had read Dr. Sardi's recommendations, he would see that Dr. Sardi agrees. He tried to tell me he did read them and I straight up said "No, you didn't. You skimmed the first page, Dr. Sardi's recommendations are on the sixth." I opened up the document, again, and pointed specifically to the area of note.

I told him, AGAIN, these packet of documentation was for him and he could keep it but he didn't want it. Absolutely, beyond frustrated we left the appointment and went to the reception desk. After explaining that we had no idea why Dr. V told us to go there, we decided to outline our frustration and see if the receptionist had any idea of who we would need to speak to next (Because Dr. V would not give us any direction what so ever) The receptionist suggested we go visit the advocacy office and see if they could assist. 

Just prior to turning and leaving, the lovely Dr. V came back out and then decided to take our information packet. I am not sure if he over-heard the conversation or not, but I am glad he decided to put his ego aside and educate himself.

There was absolutely no mistaking it. I was far more educated on appendix cancer than he was.

Baltimore - Dr. Sardi's Office

We arrived in Baltimore on the afternoon of January 27, 2015. We were somewhat concerned due to an impending blizard but God was once again in our corner and diverted the snow to the north. The airline automatically changed our flight to connect in Charlotte instead of Phillidelphia where it most likely would've been cancelled.

We checked into our hotel and prepared for the most important Doctor's visit of our lives. The next morning we went to Mercy Medical to meet with Dr. Sardi. Once we filled out the preliminary paperwork, we were taken into the office and met Yolanda Brockington, who is the HIPEC Coordinator for Dr. Sardi and his team. She has been an incredible source throughout this journey but she absolutely warmed my heart and won Chad over by walking up to him and giving him the best hug I am pretty sure he's ever gotten.

Chad got his vitals taken and then Dr. Sardi's assistant came in and asked Chad a series of questions before Dr. Sardi came in and gave Chad a physical. We then went into his office and had the actual consult. It was nerve wracking and amazing all at the same time. Dr. Sardi felt Chad was very lucky and most likely caught the disease very early. He went so far as to say that Dr. Swain and company very well may have saved his life by taking the appendix out as an 'after thought' because had it been 3-6 months down the line, the appendix likely would have burst and we would have been looking at a very different scenario.

He had reviewed all the results, scans and such and determined that Chad was a candidate for the surgery, that he was definitely willing and there was a good chance Chad could be cured. Cured. That word could move mountains. He said since there is probability that this was caught early and contained, that his plan was to start with laparoscopy and do a right hemicolectomy. He would remove Chad's right colon and part of the intestine, as well as lymph nodes to check and see if the cancer had spread there. While he was in there, he would look around and see if he sees any evidence of cancer cells or mucous spreading anywhere else.

If he doesn't, that would be the end of the surgery and we would develop a chemo therapy based upon the results of the lymph nodes. If he did see evidence, he would open him up, do the cytoreductive surgery, followed by HIPEC. We wouldn't know what we were looking at until they opened up.

Obviously, we were praying for the best.


The first week after the diagnosis was beyond difficult. We were basically waiting in limbo with nothing to do but think. Chad was in a lot of pain from his gallbladder surgery and I was running myself ragged trying to handle everything and not break down emotionally. We weren't yet prepared to tell the kids so we had to plaster on happy faces and pretend life was normal. We had to pretend we weren't scared to death.

The follow-up appointment was exactly one-week after Chad was released from the hospital. The goal was to have the PET/CT Scan the Wednesday prior. This required getting approval from the VA and we were concerned if they would pony up the cash for a $17,000 test within a moment's notice. I began reaching out to organizations, looking for answers and potential financial assistance for the PET/CT Scan in the event that the VA denied the request.

There were a few people who responded to my pleas but most were from 'generic' cancer organizations and were unable to assist unless we fit into their specific categories.  It didn't take long to confirm everything I read. Appendix cancer was rare. There were very few organizations that were geared towards this damn disease and it was beyond frustrating. Everything I read was discouraging and the one thing that rang loud and clear was that this is a tricky cancer and is different for everyone.

Towards the end of my search I came across two websites of note that were specifically dedicated to Appendix Cancer and those in a similar family. I reached out and wrote some very difficult letters, asking for help, guidance, anything.

One lady wrote me back and provided a very informative email. Later that evening my phone rang. The conversation that night, put me on a new direction. Tim Wesley, the founder of Beunintimidated, who was also an appendix cancer patient, reached out and provided some much needed emotional support. Here I was crying into the ear of some man I have never met, and he was so caring and thoughtful and really gave me hope. He shared his story and promised he would do what he could to help and connect me to the right people.

I continued researching and continued reaching out to people. The only thing I knew for certain at this point, was that I was going to do absolutely everything in my power to help save my husband's life.

PET/CT Scan Post-Poned

The original scan was scheduled for Wednesday but unfortunately we couldn't get approval for that prior to the consult, so we delayed it a week and continued pushing the VA. My in-laws somehow got us talking to Ed Whitfield's Office, the congressman for Kentucky and they were contacting the VA on our behalf as well to speed up the process.

One week after being released from the hospital, we were facing the surgeon who had the results back from Vanderbilt. He confirmed Chad did have cancer but the diagnosis was slightly different. Chad had two types of cancer. How special can one man get? I went in with some questions and at this point had already basically decided I was getting Chad to a specialist. 

The one area of concern was, since when they removed the appendix they didn't know it was cancerous, that they may have cut the tumor - which could result in cancerous seeds/cells getting into his abdomen. Dr. Swain ordered a second microscopic biopsy on the cut portion. 

I had emailed and called various specialist who are reknown in the field, asking their advice and opinions. So I went into the meeting with our local surgeon with questions and a plan. My new Angels on Earth, Denise and Tim Wesley, put me in touch with Dr. Sardi out of Baltimore who did Tim's surgery. Dr. Sardi had agreed to meet with us and I was bound and determined to make it happen. It would cost me some money out of pocket but there was no way I was putting my husband's life in the hands of someone who has never seen this cancer before. Our local surgeon actually thought it was a great idea - so that was our plan.

PET/CT Scan Approved

The very next day, we had to go to Chad's local VA medical facility in Mayfield to see his Primary Care Physician, Dr. Saxon in an effort to get approval for the PET/CT Scan. Dr. Saxon was absolutely incredible. First and foremost, there were no available appointments for like a month out, so they got us to come in first thing in the morning so he could see us before any of his other patients arrived. Then he personally got on the phone with those who would approve the Scan. Within two hours of leaving that appointment, we had approval. We also had the blood work done for Chad's tumor markers. Things were looking up.

PET/CT Scan and Results

The PET Scan was scheduled for Wednesday and went without incident. I got a couple copy's of the discs and overnighted them to Dr. Sardi's office. Our appointment with them was the following Wednesday and I wanted to ensure they have sufficient time to review the results. The day prior to leaving for our Consult with Dr. Sardi - Dr. Swain (The local surgeon) called Chad to tell us that the scan results were in and everything looked fine. There was some 'activity' around where the gallbladder used to be but they thought that was a result of the surgery.

Next Step - Baltimore.