Today is the day! They are doing the simulation for radiation and later in the afternoon he will start his first chemo infusion. He is getting the chemo drug, Cituximab. Supposedly it will not make him as sick as the other chemo drugs. The chemo doctor says the worst reaction to the drug that most people complain about is an acne like rash that he will get but they can treat that pretty easily. With the radiation they are getting his mask made today, which will be the longest he's in the mask, getting him lined up on the machines and marking him. I thought they would tatoo him, that's what everyone else has told us but they didn't, instead they put clear tape over lines made with permanant markers. That tape is going to kill him when it comes off because there is no way it's coming off before it has to! They did give him Ativan to take before he goes in for the simulation or any radiation treatments if you are clausterphobic. Don't make the mistake we made, though, I gave it to him 15 minutes before his appointment because we figured it would take about 20 minutes to hit him so it never hit him until about 1 1/2 hours later. Always take it 1 - 1 1/2 hours prior to the appointment. They are usually on time for radiation and you don't wait long if at all. Now, for other appointments that isn't necessarily true. We've noticed that they're usually behind on most other appointments so if you are coming to MDA be prepared to wait a lot. That's just par for the course. Bring books, magazines, ipads or computers. There are lots of places to get snacks, drinks and food, too. They have a trolly that comes aroun, as well, but I've only seen it once. I'll have to post soon all about MDA and the facility because it's great here!
So, the simulation is complete, we met with the radiation oncologist (and a team of about 6 doctors that all came in to stick their fingers down Warren's throat...bless his heart), a class on the side effects of radiation (where an old man called me a heifer 3 x's because I leaned over and told Warren he better take his laxatives and stool softners because I wasn't given him the enema they showed us he would have to do if he didn't take the meds regularly and when the old man herad me he yelled, "You heifer, you heifer, you heifer!" Absolutely hysterical!!!!! I'm not sure if he was joking or serious but I have to believe he was serious because he never said he was joking or said anything else to me. I love it!!!! Made my day! Warren was so loopy on the Ativan he didn't pay much attention to it but laughed a little.
After all of those appointments we ate lunch, headed upstairs for bloodwork and checked in to wait for his chemo. We did wait several hours for his chemo but whatever. That's not a big deal for us. It's not like we have anywhere else to be here. They finally called him for chemo, got him all hooked up and told us it was going to take about 3 hours. Whoa! We weren't expecting that. I should mention that they went over the side effects with us again before the chemo and this time the list got longer than before when they told us the worst side effect of this drug, Cetuximab, was an acne like rash. Now the list included: headache, nausea or vomiting, acne rash, trouble breathing, fever, etc.. Well, there were no reactions right away, the nurse was great, and we passed the time watching TV and eating dinner. He was hooked up to an IV in a small hospital like room. It was pretty comfortable. We left around 9:30pm or 10:00pm and went back to the hotel. At about 2am Warren woke up having to go to the bathroom, throwing up and a really, really bad headache and the chills and fever. That lasted all night through the next day. I called the doctor the next morning to get meds called in because we figured he'd be fine taking Advil, which he clearly wasn't. Note to self: always had the meds called in, picked up and ready to use before you need them just in case. Getting the meds was a nightmare the next morning. Since we had just gotten there and wasn't really that familiar with the area I asked the on call doctor to call them in to the CVS that I had seen downstairs from our hotel the day before. Big mistake! When I walked down to the pharmacy to pick them up they were closed! So, I called MDA back told them what happened and they told me I could pick them up at any CVS so, I got the car out of valet parking and found the nearest CVS that was open. Bye the way, this is Saturday morning. The pharmacists at that CVS said no you couldn't just pick them up they had to be called in to that specific pharmacy. On the phone I got again with MDA and asked them to please call them in there. It took about 45 minutes and two call but I finally got the meds and went back to the hotel and gave them to Warren. It took about 3 days for him to feel better. They did start him out with a double dose of the Cetuximab for the 1st treament so hopefully he won't get as sick with the others that will just be once a week.
We packed up, got the kids organized and off to school and hit the interstate. Houston bound. (6 hours) Not the easist thing to do, leaving the kids, but knowing we will be coming home the first two weekends helped keep us focused. I think the hardest part for both of us is going to be being away from the kids. Thank goodness for Skype and Facetime!!! Warren's first appointment is March 1st. We are heading over there staying in a hotel for 4 nights and hoping to find an apartment before Monday. We are staying at the Marriott in the Medical Center. Downtown Marriott's are always nice! Can't go wrong there but the downfall is you usually have to pay for parking and wifi at the downtown highrise Marriott's. Which, also, means tipping for bellman, car attendant's and shuttle servcie (if available) which adds up. Oh, and no free breakfast! I know, it sounds like why in the world did I book this hotel but it's within walking distance to a lot, very comfortable, in a safe area and it was the lowest best available rate for the weekend. It's more expensive to stay in hotels Monday-Wednesday. Weekends, Thursday-Sunday, are always cheaper rates. Just a little FYI in case you didn't know. Hello, Houston! We're back and ready for the fight!
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| Houston, TX |
Late one afternoon my husband was doing Insanity in the living room when he glanced over at the mirror and noticed a lump or a swollen gland protruding out of the right side of his neck. We didn't think much of it. Figured it was a swollen gland. Some time went by and we scheduled our 3 year old to get her adenoids removed. (A much needed procedure that we had been putting off for over a year.) While we were meeting with the ENT discussing her surgery my husband mentioned his neck to the doctor so he took a quick look and quickly said, "Yeah, it's probably just a second branchial cleft cyst", after asking my husband a few questions. The slight worries we had were then put to rest and we told him we'd make an appointment to see him once we had our daughter's surgery behind us.
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!
