Needless to say we ended up getting in before her surgery. Our appointment was scheduled for November 29, 2012 and our daughter's surgery was scheduled for December 4, 2012. When we went in for his appointment the doctor decided to go ahead and do a needle biopsy. He said that usually when it's a cyst he will be able to extract amber color fluid with the needle but nothing came out when the doctor stuck the needle in the lump (or at least nothing to the naked eye...I think he said he did get tissue samples.). I could tell something wasn't right by the look on the doctor's face when he didn't get any amber color fluid out of the cyst. Or any fluid for that matter. He seemed puzzled and asked us many, many questions for a while trying to get to the bottom of this. He was so positive it was a cyst until this happened and then he asked questions trying to figure out if maybe the swollen area could be from Hepatitis or an infectious disease or anything else. I started to get a little worried at this point but still not too worries. The doctor said he wanted to go ahead and schedule my husband for surgery to remove the lump because that was the only way we would know exactly what it was. In the meantime he would send the tissue samples that he did get out of it off to a lab to be tested to see if it is malignant or non-malignant. He scheduled surgery for December 11, 2012, which meant my daugther would have her adenoids removed on Tuesday, December 4th and my husband would has this lump removed the following Tuesday, December 11th. It was going to be a busy December! Our daughter did fine through her surgery and recovered very fast and then Warren went it and had it removed. When the doctor came out to tell me it went fine and he was in recovery he said the test results from the needle biopsy came back and it was non-milgnant. A huge sigh of relief came over me but he proceeded to tell me that those results really don't matter because what they really look for is a malignant result and that false-negatives are common so now we just have to wait until the results come back from this lump they just removed and that will tell us what we are dealing with.
On Wednesday, December 12th I took my daughter back for her post-op appointment and I could tell by the way the doctor and his nurse were acting they knew something about my husband's results but I didn't ask any questions about him. I was there for her. Warren and I went back in for his results on Friday, December 14th and that's when they broke the news to us. He was diagnosed with Squamous Cell Carcinoma. I kept telling myself all week that if it was Cancer I would be the strong one. I had to be strong for my husband and for my kids and I knew we'd just get through it but when those words actually came out of the doctor's mouth I felt my heart just sink into my stomach and felt like our world as we knew it was crashing down before us. (Of course, now I feel completely different but we'll get to that!) How could this be happening? We actually sell Cancer policies and we tell people weekly the statistic's of Cancer...1 in 2 Men and 1 in 3 Women get Cancer. (It was always in the back of my mind that eventually it will effect us, although, I liked to think it never would. It doesn't really run in my family, other than prostate cancer on my dad's side. Warren's grandmother actually passed away from throat cancer but the doctor says that it's not hereditary.) So, the doctor wanted to get him back on the operating table to find the source of the cancer. He said with this type of Cancer it usually originates on the back of the tongue or in the throat and if he is positive for HPV then the success rate for beating the cancer is a way better chance. So, off to the operating room again the following Tuesday, December 18, 2012. About 20 + biopsies were taken and the results were back in a couple of days. The source was a small tumor on the base of his tongue and that was it, so the cancer had spread to his lymph nodes and that is what the doctor had removed during the first surgery. So, now we had to figure out what type of action were we going to take for treatment. Our ENT referred us to our local hospital to meet with the general oncologist to go ahead and get the process started. I will try and remember exactly the time frames butI'll tell you now that this has been a GIGANTIC WAITING GAME. It seems like until now, March 1st, we have been waiting for something, whether it was an appointment, test results, a phone call, insurance, etc., since November 29th, his first doctor's appointment. We went ahead and scheduled our visits with the local oncologist and in the meantime was trying to get into MD Anderson in Houston, TX. We figured we would go ahead and go to whatever appointments came first so that we didn't waste any time. We knew they would want CT Scans, PET Scans and other tests and bloodwork so that's what we did. Once we called MD Anderson they just had to verify insurance and it appeared we would get in pretty quickly. Within a few days MD Anderson called me back and said they were having a problem verifying insurance so when I checked with the insurance company they said that's not how they worked so they needed time to do their investigation and would let us know something as soon as they could. Well, in the meantime MD Anderson said they really couldn't set us up with an appointment until they knew for sure that insurance would pay unless we were going to be self-pay. So, for the first appointment we coughed up the money that it took to go ahead and get out there to get the ball rolling. That money we had to come up with for the first visit, which was two days, was $17,000 in cash. We took money from here and there and borrowed a little. (Hate doing that but you do what you have to do in these situations and deal with it later.) We flew out to Houston and met with the doctors. (I should've mentioned that Warren's test results came back positive for HPV, which was a good thing in this case. If you haven't done your research on HPV do it! 90% of Americans get HPV now. It may lie dormant in your system, your body may kick it back out at some point in your life or it may cause cervical cancer in women or many other cancers in men and women.) I highly suggest getting your children vaccinated. Ages 11-26. Anyhow, we met with the doctors and they decided chemo and radiation for 6 weeks. Chemo once a week and radiation everyday, Monday-Friday for six weeks and they told us it had to be there in Houston (six hours from home). For some reason, we thought we'd get a second opinion, maybe they would design a treatment plan for Warren and then send it back to the doctor's at home where he would be treated and we'd come back to Houston from time to time for follow up visits. It wasn't looking like that plan would work out. Our radiation oncologist here at MDA said either she was his doctor or she wasn't that she wouldn't design a plan and then send him somewhere else to be treated. (Don't get me wrong, she's the sweetest doctor ever and we love her!) Well, that threw a wrench in our plans. We went home thinking we'd figure it all out soon. The doctor said she would really like him back within two weeks at the most. That appointment was January 10th and 11th. Once we went home we knew we had to wait on insurance to give us the go ahead anyway before we could do anything. We couldn't continue to be self-pay. I called MDA to find out how much treatment would be just in case we could raise the money and found out the total would be around $258,000 for six weeks including follow up visits. That wasn't happening so we waited and waited and waited from the insurance company. We called weekly and let me tell you, all they were doing was trying to build a case on denying our claim. They were of NO help and held us up for almost two months until they finally denied it officially. Once they told us they weren't covering it then the fight began to try and find a coverage. Something that would allow us to go back to MDA for Warren to get the best treatment he deserved. (That everyone deserves!) By the way the insurance company who denied that claim was HCC. They said the cancer was pre-existing. I'm not even going to go into detail about all of that because I still get so mad and I'd have to write another book just on that topic so I'll spare you the story. Anyhow, we tried PCIP the MS Risk Pool and Medicaid. All failed. We finally found a policy through BCBS of MS that now writes group policies and pre-existing does not exist so they are covering his cancer as of March 1st, 2013. Well, that bring us up to date. We were scheduled to go back to Houston and start on March 1st! Of course, BCBS wouldn't let MDA verify benefits until the policy actually went into effect so we basically had to pack up like we were ready for 6 weeks and come over here all on faith that when MDA called to verify the benefits that everything would be fine and it was! Hallelujah!!! I completely credit that and my strenth to all of the many thousands and thousands of prayers that we are getting daily. The support has been unbelievable! My best friend suggested that I start a blog to try and help others going through the same thing so I hope it reaches at least 1 person. If it does it will have been more than worth it! Something I didn't mention was that the first night we found out that he had cancer was a bad night. We cried and cried and prayed and prayed. I woke up the next morning completely fine. The only way I can explain it is that God gave me more peace and strength than I've probably ever felt. I just knew that everything would be fine. Hard but fine and I was ready to fight the fight for my husband even if he wasn't quite ready. He went through about a week of pretty deep depression. Every time he looked at the kid he cried. He moped around the house feeling sorry for himself and thought the worst. I told him I was given him just a few days to a week to have a pity party and then he had to snap out of it. There was no time to sit around feeling sorry for ourselves! I know prayers helped him snap out of it because after a week he was completely fine and ready to get this fight underway. Spirits were back up better than ever. Little did we know that we would have to fight for treatment for two months before we could actually start the real fight against the cancer!
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