Short One

We have been asked many times over the last several days by many of you what we need. My normal reaction is we don't need anything. Actually, that is my ego not wanting to ask for help. I am simply not good at asking, and my closest friends know that about me. So our best friend Rae decided to open a benefit account at the American Bank of Oklahoma in Collinsville. (Not Bank of Oklahoma.) And I have to be honest, finances are going to be our biggest obstacle through all of this. So I was asked if I would post this information on here, and after some consternation by me, and encouragement from others here goes. To donate money to the account you may contact the following people: Rae Sutton (918) 951-6529 or Michael Dunning at (918) 629-5776. They can direct you on how to donate. If anyone knows where I can get a new body free of cancer, around 25 years old, in really good shape, with more hair I would be very grateful as well! Thank You!

WOW!

I thought the last time I wrote was information over load. I was wrong. I didn't realized that you could actually reach a point where no matter how bad you want to think, and I mean about anything, you just cannot make your brain work. It's possible. I actually forgot how to get to the bathroom today, and I was standing in front of the door! And the worst part is it ain't over. If this keeps up I may actually get committed for being comatose on my feet.

This is going to be another long one. I apologize, but to make it understandable there is simply no way around it. We had our appointment at MD Anderson last Friday. When you first arrive the nurse does the initial intake, asking a million questions. Then the Physician Assistant comes in, asks the same million questions, does a brief exam then leaves to get the doctor. This visit, the Assistant came back in and informed us that the doctor was looking over my latest PET Scan, done just weeks ago, and told us that he had found a spot in my right lung that he didn't like. She told us that he was looking over all of the Scans, MRI's, CT Scans done over the last year to see if the spot showed up in any of them. Finally the doctor came in and said those magic words you love to hear when you are at one of the leading cancer hospital's in the world........I have bad news. YAH! What he told us was that there is a nodule in my right lung that "lit up" on the PET Scan and was bigger than it should be. (It wasn't in any other scans.) He told us that in his opinion, he would feel safe saying as percentages go, the chances are 90% that it is cancer. He then told us that if we wanted to have a biopsy done that we could but that it comes with a lot of risks. The biggest risk is the lung collapsing. He stated, and we are in agreement, that doing a biopsy is simply irrelevant. The reason is because the fear that we have had all along is that the cancer would metastasize and it has. And because of that there are most likely micro-metastasized cancer cells other places in my body. Thus it is not very important that it be biopsied because whether or not it is won't change the treatment plan. Upon asking him, he told me he would put me at stage 4 cancer.

We then began discussing treatment options. Actually he and Rebecca discussed them. I was sitting in the corner staring into la la land wondering if I could jump over the exam table and be out the door in less than two steps. What I finally learned the next day was he suggested three treatment plans. Mild, Moderate, and Advanced. Fairly simple sounding names. Don't let that fool you. I did. The moderate is one drug with only a 1% effective rate, would be done here at home and is fairly inexpensive. I would also be able to work during the treatments. The moderate is a combination of two drugs, is only 4% effective, costs around $15,000 a treatment, and would take a minimum of 5 months. Most likely I would not be able to work during that time due to being sick from the treatments. The advanced has two options. Both are a combination of drugs that are about 16% effective, range in cost from $45,000-$75,000 a treatment, can only be done at MD Anderson in Houston, and is physically brutal on the patient. They both are a minimum of 5 months which obviously means I won't be able to work. I also have to pass a physical exam just to see if my body can handle the treatments. It would mean being in the hospital in Houston for one week during the treatments, then off for two weeks, then back again for a week, and so on. The last question that Rebecca asked was what was the prognosis without any treatments. The answer, I have 18 months to live. At that point, while still in la la land and planning my escape, I am pretty sure I started drooling. All I wanted was to leave. When we got home we started looking up the drugs that are involved we found several articles that said once it gets into the lungs the patient has 15-18 months to live without treatments.

So the quandary. At this point we feel the only option is one of the advanced treatments. We understand that the cancer has gone "mobile" and that is not good. Whether or not the spot in my lung is cancer is irrelevant. We have to do something, and it needs to be aggressive. The problems now are numerous. First there is the obvious, money. Not counting the cost of the treatments, there is me not working and trying to maintain our life here. We will have to take measures to down size to the bare minimum financially. Then there is being in Houston for more than 6 months. The logistics are mind boggling. There is travel, food, medicine, and the list goes on. But, and what weighs on our decision more, is the long term prognosis is not good. I called a good friend of mine today who is a Radiologist at the Cancer Treatment Centers of American in Tulsa. After a conversation with him, he spoke with an Oncologist there and both immediately said I need to go to MD Anderson. We are going to go. One way or another, we are going. But, and I don't like to ask, we need help. Please pray that God works things out for us to go to Houston. Please pray that God works things out here at home. Especially, please pray for my family, all of them. The stakes have been raised once again and the fight is on. We are going to fight with every ounce of our beings, and are going to seek out every option possible. I will be honest, I have not had a good day. I have let the fear take over. I have asked why me, what now, what are we going to do? All we can do at this point is put one foot in front of the other, work towards going to Houston, and trust that God will open the doors. We trust that all will be okay.

Remember every day to put one foot in front of the other, drink a lot of water, and don't forget to breath.....................

Latest

It is Saturday as I write this. I am trying to get it done before 3:00 pm because it is that time of year again! OU football. They play at 3:00 today and once kick off comes, I will be doing nothing else but watching the game. What a great time of year. Cool Saturday's with nothing to do but be lazy and watch football. And for anyone who is wondering, my wife is a huge football fan, especially OU football. Yes I know I am lucky. One of the reasons I married her.

We have a little bit of news. We met with the surgeon yesterday. The first thing is he took the drain out of my arm pit which I am very grateful for. They aren't so much painful as they are annoying and restrictive. The final pathology lab came back on Thursday and he was able to let us know what they said. They took 15 lymph nodes out during the surgery and of those, 3 were cancerous. I think in my previous blog after the surgery I talked about a tumor under my arm that they weren't able to get to through the first incision. It too was cancerous. Also some of the tissue he removed that was around the nodes was cancerous as well. The rest of the nodes and tissue he took out was clear. It's what we all expected. No better, no worse. On Wednesday and Thursday I was very sick. I had chest and head congestion along with aches and pains and couldn't hardly get off the couch. After sharing that with the surgeon, he told us that it is a viral infection and is most likely what caused my breathing problems on the operating table. We know there will probably have to be more surgeries in the future and we were worried about the breathing issues. He assured us that the issues were a result of the illness and nothing else, and that we shouldn't worry about any more issues during any future surgeries. We have not met with our Oncologist here and don't know when we will. We do have an appointment at MD Anderson in Houston next Friday the 17th. We are going to meet with them and see what they say. We will then come home, met with the Doctor's here, and formulate a game plan. If we feel that I can be best treated in Houston, we will do everything we can to make that happen, if it's at all possible.

Again with the hurry up and wait for answers. I think yesterday both Rebecca and I reached a point that we just flipped the proverbial switch and turned it off. We are both worn out and needed to rest. I cannot say enough about my wife. She is incredible. She has taken care of me, the kids, the house, and been constantly on the phone getting medical records and talking to Doctor's office's. Tenacious doesn't even cover it. I honestly don't know what I would do without her. We are shutting it down for the weekend. We are going to rest this weekend, try not to think too much, and hit the ground running on Monday. We really appreciate all of the emails, calls, and texts from everyone. It means a lot to us and gives us strength everyday. We know things will be a little different this time, but the one thing that will never change is that all of the thoughts and prayers we receive are what helps us get through no matter what the road ahead my bring. Thank You!

Post Surgery

I am sitting on the couch, writing and watching TV. In case you are wondering the show is one of those entertainment shows and they are talking about "Dancing with the Stars". Wow, do we not have anything better to do now days than watch people, called stars, dance? And how is Bristol Palin a star? That is thirty seconds of my life I will never get back!

Well, as I stated, we are home. The surgery went okay. Once I was under, the doctor began and removed the first lymph node. It was then immediately sent to the lab where it was tested and confirmed that it was cancer. He then removed all lymph nodes that he could find. He also told us that there was an area of tissue that didn't look good to him so he removed it as well. After that he began working on other areas of tissue, as we understand it, as a precautionary measure. During that time I stopped breathing, and did so a few times. The decision was then made between he and the Anesthesiologist to stop the surgery. He did tell us that he accomplished what he hoped to but was unable to continue to do more because of the breathing issues. We hope that all was removed and won't have to do another surgery in the same area, but that will remain to be seen. We will now have to watch the issues that come with having the nodes removed. The next step, at this point, will be to make an appointment with MD Anderson in Houston. We are going to try to get it done next week. The Oncologist here will wait on the lab results to come back and we will then meet with her and begin to formulate a treatment plan. As I stated in my previous blog, much more will be known once the labs come back. I am feeling good for the most part. I am in a small amount of pain but it is much better than the last two surgeries. I do have another drain tube in the arm pit that we have to drain once an hour or so, but luckily this time the after care is minimal.

The last two times I have had surgery we made arrangements for the kids to be elsewhere. This time, after some discussion, we gave them the option to go to school or go to the hospital with us. Each of the last two times it was hard on them to not be there through the whole process, which left them with a lot of questions. The hope was if we took them they would feel more part of the process and help answer some of their questions. They each chose to go with us and I am glad they did. They got to be there with their mom and my parents which I think helped all of them. They did great too. They got to watch the IV nurse put my IV in, got to see the inside of the room, and got a great laugh when they saw me in the "gown". It was quiet funny to watch and listen to them try not to laugh out loud when they saw me.

Well, it wasn't the news we were hoping for. It was the worst case scenario at this point. We still have a lot of unanswered questions that will simply take time. We have always known in the back of our minds that this day and others like it could come. As I think I stated in the last blog September 24, 2010 would have been my one year mark. Almost made it. I cannot even begin to express the feelings and emotions we have all felt over the last few weeks and especially today. Scared, angry, numb, hopeful, overwhelmed, tired, we have covered them all. Funny how things change so quickly in life. We face a new challenge, one that brings more to the table than last time. Along with a greater sense of urgency, comes an even greater will to fight no matter what it takes. I have been reminded today as I spent time with family and friends, that nothing else matters but my life with my family and friends. Each of you brings strength and hope into our lives everyday. My outlook is simple, I will fight with everything I have and enjoy each day to it's fullest. And at least if I am going be sick in will be in the fall and not the horrible heat we have had this summer! We will do our best to keep everyone informed as we go.

Remember each day to put one foot in front of the other, drink a lot of water, and don't forget to breath.........

Short Update

This one will be short and sweet. I am scheduled for surgery Tuesday morning at 7:00 am. Much more will be known after the surgery and we will post a new blog and let everyone know what we find out. We are taking today (Sunday) to just be lazy and enjoy the day. I told Rebecca today is a time out!

Information Overload!

Well I am going to skip the weather issues and other anecdotes on this one. It is going to be a long one, sorry. We have been filled with tons of information over the last two days and in the final analysis, I don't know that we feel any better about things than we did before. I will do my best to explain in short and understandable terms where we are.

Let me first cover some points about melanoma. It is probably the least understood cancer, and without a doubt the hardest cancer to treat. Mine was an advanced melanoma. And with melanoma the cells, in the beginning, are microscopic. So small in fact that they can, and normally go undetected by all tests until they reach a certain size. The obvious problem with that is once they are detected they can be a serious issue. For example, one of the questions we had was my blood work. Every time I go to the doctor they do blood work, and every time it is fine. When we asked the doctor about that she said that is normal. It very rarely shows itself in the blood work. The next issue, and really the main issue with melanoma, is a term called metastasis. In essence, it means the cancer cells have begun to spread. I call it going mobile. With melanoma, the statistics are not good. Most don't survive advanced melanoma. And one of the worst things that can happen is that it shows up later in another part of the body. Thus, it metastasizes. It has gone mobile. One of the things we asked the doctor was when it shows up in another part of the body like my lymph-nodes, is it still melanoma or is it lymphoma? The answer was simple, melanoma. She said that once that diagnosis has been made, no matter where it shows up it is still melanoma. When we left the doctor's office yesterday my dad said it best. I will paraphrase, but basically he said, everything I have read about melanoma is, if it comes back anywhere else other than the original site, it is not good. It means that it has metastasized and the fight is on. I don't know a better way to sum it up. Another of the basic questions was, what stage do they consider me. Cancer has four stages, one through four, four being the worst. She has me at stage three. Bad, but not stage four. Stage four is mostly when it gets into organs. Obviously our fear at this point is that if it has metastasized it could be in other parts of my body but has not grown enough to show itself yet. One of the doctor's statements to me was, I understand this is your worst fear come true. Very true.

The next step is surgery. I am scheduled for surgery on Tuesday the 7th. What the surgeon will do is take out a lymph-node, do some sort of test where they freeze the node and photograph it. From that they will be able to confirm that it is cancerous. At that point they will do a full node dissection. When they remove the nodes they will be biopsied and from that the Oncologist will be able to determine a lot. They will then be able to tell if it has metastasized. Don't ask me how, that is way over my head. But the information they receive from the pathology lab will determine what will happen next. Another one of the issues discussed was possible treatments. Basically chemotherapy is useless against melanoma. There will most likely be radiation on my right arm and shoulder area. You may remember when we went through round one, one of the suggestions was a drug called interferon. At the time we opted not to do it. It is the only drug, so far, that has shown any affect on melanoma. But it is a horrible drug for most people, with terrible side effects. Our doctor did say that we might have to look at it as a real possibility this time. (We hope not!) There is a new melanoma drug that has shown the best results by far, but it has not gotten final approval by the FDA yet. I think that the biggest thing that has caught me off guard so far was, if they do a full node dissection I will possibly have a lot of problems in the future with my right arm. With the nodes gone, a great amount of fluid will collect in my right arm causing swelling, lymphedema, and infections. One of the biggest contributors to those issues is usage of the arm. I will have to limit what I do with that arm. Not good for my line of work. I won't be able, if those things occur, to fight with people or do too much with that arm. When we brought that up with the Oncologist the first thing she said was that I may not be able to be a cop anymore and that she would help us get on medical disability. We asked the surgeon about the same issue today and he confirmed my fears as well. In our retirement system I cannot medical retire until my ten year mark. I am at six and one half. Not what I wanted to hear. I knew what the end result of the cancer could be, but I never thought I may have to give up the job that I love in the process.

Let me first of all say this. We are not being negative, nor will we EVER give up. Rebecca and I made a few commitments to each other when all of this started a year ago. The first and foremost is that we will always be honest with each other, the kids, and each one of you. I was watching a video clip the other day on the new melanoma drug on MSNBC. The first statement that the doctor being interviewed made was, "advanced melanoma historically is a death sentence". That is our reality. Not that we think that will happen. But we also won't bury our heads in the sand, whistle dixie, and pretend everything will be okay. We have to know what we could face. The fact is, if things go the way we think, this is going to be a greater challenge. We both have to worry about sick time at work. I have some left but it won't last long. The kids still have to be fed, the bills have to get paid, life goes on no matter what. The fear is multiplied this time, partly because we are more educated that we were the last. One of the other commitments we made was that when we get bad news, we give each other a day or two to feel whatever we each need to feel. Whether it is angry, sad, scared, frustrated or any other feeling. We give ourselves that time to feel it, deal with it, and be done with it. We then come back together and say, okay, enough. Now we shift those gears and fight, period. We are pushing in the clutch and starting to shift. It is going to be a long weekend waiting for Tuesday. But, one thing is for sure, we have been through a lot and have learned how to keep going forward and fight with all we have. We have a great support of family and friends who have done and continue to do so much for us. It has been great to have my Mom and Dad with us every step of the way this week. So that is where we are and what we know. And yes I asked the surgeon today if I got the buy three get the fourth surgery free deal and he said no. Oh well, worth a try. We will keep everyone updated as we know more.

Remember every day to put one foot in front of the other, drink a lot of water, and don't forget to breathe.............

Round 2

Let me just get this out of the way. I am ready for fall. Enough of the heat. And yes I know, in December I will be begging for warm weather. I have tried to water the weeds in the front yard for the last several days to try and green it up a little but I am afraid I am wasting my money!

Well here we are, Round 2. We had hoped that we would at least make the one year mark, which would have been September 24. But we didn't. For those who don't know in July I had surgery for an umbilical hernia. When they got me into the operating room the surgeon, who knows my history, found a lump on my stomach he didn't like and removed it. It was tested and came back clear, but is the kind of lump that turns into melanoma. (And yes I was off work for 6 weeks. I am trying to set a record for days not worked in a year!) A few weeks after my surgery I found a large lump, unlike anything I have had, in my right arm pit, in the area of lymph-nodes. I finally went back to work a week or so ago on a Wednesday evening. On the following Friday I went to see the Oncologist. After examining the lump and the other one she found that I had missed, she told me that I would have to have a PET Scan and to be prepared for the fact the cancer had come back. We got the results back yesterday and they told us that several of the nodes in that area "lit up" on the PET scan and are enlarged. The next steps at this point will be an appointment with the Oncologist today, an appointment with the surgeon tomorrow and surgery sometime in the next week. Yes, more surgery. They are going to remove all of the lymph-nodes under my right arm. And off work again. I am going to break that record. I am also going to ask the surgeon if there is some sort of buy three get the forth free surgery, or frequent surgery miles. I gotta get something at this point besides more scars! We don't know, at this point, about any chemo. or radiation. When we went through the first round the doctor's told us that if a recurrence happened in the same area there would be some sort of treatments but it is still too early to know at this point. We are grateful that so far it doesn't appear to have spread any where else. With melanoma, it still could be somewhere else we just don't know it yet. We have learned a lot about melanoma over the last year and each recurrence is very scary because it can spread fast and is so small that even a PET scan won't pick it up for a while.

That is what we know at this point. We are scared to say the least. I think that in the back of our minds we knew this day would come again, we just didn't expect it so fast. I have had numerous lumps and moles removed and tested over the last year and each has been fine, and I think in some ways we just expected them all to turn out that way. I don't care how many times you hear you have cancer, it never gets easier. And having to tell my family and friends isn't much easier either. We are still somewhat in shock and are a little numb at this point. The worst part this time was the waiting to get answers after the doctor's appointment. That feeling of limbo, not knowing, is almost worse for us than knowing that I have cancer. We have talked many times over the last few days that a least if we had answers we can shift gears and get into the fight mode. So that is where we are today. Shifting those gears and putting together a game plan. We most likely will, at some point, head back to MD Anderson in Houston at least for a consultation. I want to always keep that door open and have that tool at our disposal. We will have more answers over the next few days and will post a new blog as soon as we know more. I know that each of you do, but keep us, especially the kids and our families, in your prayers. When we told the kids last night they handled it very well. Later in the evening the each got very emotional with tears and hugs. There is no more helpless feeling in the world. They have been through a lot and it is very frustrating for me to know that they will have to go through even more. Round 2. Time to get the gloves on and fight.

Remember each day to put one foot in front of the other, drink a lot of water, and don't forget to breath.......