Sunday, May 31, 2009

Warning: GRAPHIC PICTURES

Dr. Netterville's Surgery scheduler called us Friday to inform us they have reserved the operating room all day Tuesday for my surgery. She could not give us the start time because Dr. Netterville was in Phoenix AZ last week, but will call us tomorrow morning to let us know. We will take our lap top with us and eighter Stephanie or Wendell will keep my blog updated.

I have had more pain in my jaws today than normal and had voiced that to Wendell several times throughout the day. Tonight I realized my mouth was opening a little bit more than usual. I don't know if that was a result of the pain or if the pain was a result of our company today!!! The Treadways came over for lunch today and everyone that knows us, knows, when Carolee and I are together, no one else can get a word in!! We talked nonstop for hours!!! So maybe it was the extra exercise that made my mouth open a little farther!!!! Thanks Carolee!!!

I have wanted to be able to show those who might be interested the hole in the roof of my mouth. Although I have tried to take a picture I have been unsuccessful in the past because my mouth would not open far enough. But thanks to extra pain, or great company, or whatever, I was able to get some pics tonight. So for those who would rather not see, (Squirel, This Means You!!!!).... consider this a WARNING!!! READ NO FARTHER!!!! STOP NOW!!!!!!
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For Those Who Are Curious....Here It Is...This is the best I could do...This is the roof of my mouth...











Saturday, May 30, 2009

Punky's Graduation

Our family celebrated another milestone this past Thursday, May 28, 2009. Our third child, Tiffany Brianna "Punky" Ruppe graduated high school!!! As I sat on the pew during the graduation ceremonies I thought about a lot of things. The Lord has truly blessed Wendell & I as parents. Our children are the greatest blessings of our lives. They are our greatest joy in this world. They have never gave us one ounce of trouble, to which God be the glory!
Punky went to public school for Kindergarten and First Grade and then the Lord placed it on our hearts to home school our kids. We home schooled until she was entering the eighth grade and then we enrolled them in Fellowship Baptist School for the next 4 years. Fellowship School closed after last school year and we were really in a delima as to where we were going to send them. After much prayer, the Lord worked it out for us to send Tiffany & Mikiah to Calvary Baptist School. It was one of the greatest blessings throughout their school years!!!! The Lord has truly been good to our family in allowing us to give our children a Christian education.
I thought about how when I brought Tiffany home from the hospital, Josh was 11 and Stephanie was 8, It had been along time since we had a baby in the house. I called her my "little Punky Doodle" and it just stuck, soon everyone was calling her Punky.
Punky has always had an outgoing personality and a sense of humor that keeps our house "alive". Punky, without getting too sentimental here I just want to say CONGRATULATIONS!!! I am extremely proud to be your Mom. I love you more than you will ever know!!!






Micah Plemmons, Brandi Guge, Grace Anna Phillips, Goldie Mack & Punky


Aaron & Punky


Kiah & Punky

Stephanie & Punky

Punky & Lukey Gamble (Aaron's only competition!)



Wednesday, May 27, 2009

Waiting On Confirmation

We are still waiting on confirmation from Dr. Netterville's surgery scheduler to confirm my surgery for June 2. Hopefully we will receive that confirmation tomorrow.

For the last 7 or 8 years we have gone on vacation with our friends to Destin Florida every year at this time. We have had some wonderful vacations and made some great memories with our children and our friends. This year of course is different, we were unable to make the trip. But we were still able to enjoy Memorial Weekend on a camping trip with our friends and families. We had a wonderful relaxing time. While we were away I recieved a text video message from my two favorite little guys!!! They were calling to let me know they had left me a surprise at my house, two beautiful pots of flowers which they had each wrote a message on for me!!! Thank you Scottie and Isaiah!!! Once again you have made my days brighter!!! I Love you guys!!!

I also recieved a very thoughtful gift from my cousin who lives in California. She knows the effects of radiation and has been so thoughtful and concerned over what she knows I will be facing. She sent me a huge can of Shaklee Energizing Soy Protien Drink Mix. I just wanted to let you know I recieved it, and to say Thank You Donna!!! I know this will be something that will be very beneficial to my recovery and keeping up my strength during the times in which solid foods will be impossible for me!!!

Friday, May 22, 2009

More Surgery?

We made the trip to Nashville Thursday for our follow up appointment with my surgeon, Dr. Netterville. Once again we were expecting to go and hear him say the lymph node needed to come out, in what we figured would be a fairly minor surgery. Once again we were wrong. After examining the disk of my PET Scan, and seeing how that I cannot open my mouth, Dr. Netterville had a whole different game plan than what we were expecting. He said he could do a biopsy of the lymph node, but we would be left wondering in the future if it had become cancerous, so it would be best to remove it. That was the news we expected. He then went on to explain why my mouth will not open.... As the surgery site heals it shrinks which in turn causes the muscles to freeze even more. The only way to open my mouth would be to go in (through an incision in my neck) and clip the muscles and replace part of them with good tissue. (If he just removes some and clips the muscle without putting in good tissue, my mouth will just close up again.) When he puts in the good tissue he will go ahead and do a flap reconstruction of the original surgery site and cover the holes in my mouth. This will give me back my normal speech and my ability to eat normally. He will also remove the questionable lymph node at this time. I had made up my mind after my surgery that I would not ever have the reconstruction surgery, I could not imagine going through all it entails. The surgery will last from 9-12 hours, I will have to have a feeding tube, they will take skin, tissue, and blood vessels from my fore arm to make the flap, they will take skin from my thigh to cover what they remove from my arm. I will probably have to have a tracheotomy for a while because of the swelling. I will be in intensive care for three days after surgery and then be in the hospital seven additional days. The pain from the original surgery was more than I could have imagined, it's hard to imagine going through this. I would not even contemplate doing this except for ..... All the Doctors I have seen have informed me that when I have radiation my mouth will close up even more, well, if it closes any more it will be completely closed and I will have to have a permanate feeding tube!!! If I take the chance and go ahead with radiation with my mouth like it is and it closes up more having the surgery after radiation is more risky. There is a greater chance that it will not take because of the damage from the radiation. If it does take, healing is a much longer process. I did not expect to hear Dr. Netterville's recommendations. He kept telling me I have a great attitude but he just wants to give me a better quality of life. To that I say, I am very happy with my life. I feel very blessed to have the wonderful life I have. My speech may sound as if I am mentally challenged but Wendell and my kids can understand me and that is all that matters to me. My mouth really isn't that big of a deal to me either. If I can get food poked in, I can eat it. It is very good weight management because I become so tired from eating that second helpings just aren't worth the effort!!! Thus an added blessing!!!:) But what concerns me is.... if I get a virus that causes vomiting I don't know if I would survive. Also if I ever need dental work it would be impossible. After healing from the surgery for six weeks I will still need radiation. The real surprise was when he informed me he had already talked to his surgery scheduler and had rearranged some surgeries so as to fit me in as soon as possible, June 2!!!!! Twelve days away!!! Not long to prepare. As he was telling me all this I was thinking NO Way!!! I am not having another surgery!!! Then out of the blue he said, "As I was looking at your PET Scan and this lymph node, and the problem with your mouth opening I thought maybe this was God's way of telling me we needed to go ahead with the flap surgery at this time."
What do I say to that? Most doctors never mention their faith or lack there of!!!
Once again, on this journey, I need the Lord's guidance. It is still my desire to walk this path in His will and the way He has designed for me to walk it. I know if I am in His will, He will continue to provide the grace necessary to calm my fears and to sustain me on this journey. Once again I am calling on my God to guide me in the direction He would have me go. Once again I am asking that you help me pray for the Lord's will to be made known in my life. Once again I know There Will Be Grace.

Tuesday, May 19, 2009

PET Scan Results

We had an appointment with Dr. Bopanna at Baptist West today at 1:45 to discuss the results of the PET Scan I had yesterday. Wendell and I discussed the fact that our nerves were kind of on edge today, on the way to the appointment. He said we have went to the past appointments expecting to receive good news and had been given news we didn't want to hear, so today we were expecting the worst. Luckily, we have found, at most of these "cancer" appointments, we are not kept waiting long, for which we are very thankful. So after reviewing my scan and the report Dr. Bopanna informed us that.....
On the PET Scan any areas of cancer glows. It does not make the cells glow but if there are areas of cancer those places will glow. On my scan the area around where the surgery was, is glowing at a scale of 3.4, which may mean it is just from post surgery infection. Anything glowing on a scale of 6 is pretty much considered cancer so the lower number is a better sign. There is also one small lympth node in my neck that is glowing at a scale of 5 which is more worrisome and is considered borderline. We will take the disk of the scan with us to our appointment with Dr. Netterville on Thursday to see what he wants to do about the lymph node. Dr. Bopanna said Dr. Netterville may want to remove the lymph node, do a biopsy, or just insure it is included in the area to be radiated. So for now we will just wait to see what Dr. Netterville feels we need to do. My temple has been sore for months, (even prior to the cancer discovery), so I was concerned about what that area would show on the scan, but he said it was clear. Once again, from what I understand, there may be individual cancer cells which will not show up on any scan or test, (thus the need for radiation to begin with), just "areas" with cancer show up on the scans. All in all Wendell and I felt some relief after hearing the results today, at least we know the cancer hasn't spread very far yet.
I have listened to Wendell make phone calls after my appointments to inform some family members of the results and he always says "we". "We" had a scan today... "We" got our results back today. Etc... I have thought alot about this lately. It really is a "We" deal. I may be the one physically experiencing the tests, but he is definately physically feeling the effects. I know he spends far more time than I ever have thinking about and worrying over all this. I don't know how I would make it through this without him. He has been by my side every step of this journey. He has driven me to every appointment, (except one, when he was so sick with the flu he could'nt get out of bed), He has went in for every appointment they will allow him to and sat in the waiting room for all the rest. If you have ever spent much time in Dr.'s offices you know how tiring that can be. He has cooked anything and everything he thought I might be able to eat.
I am truely a very Blessed woman!!!

Monday, May 18, 2009

PET Scan or Science Experiment?

We went to the East Tennessee Diagnostic Center this morning for a PET Scan. The paper they had gave me said I would be there for approximately 2 hours and I was. We arrived at 8:30 am. After filling out the usual new patient forms I was called back fairly quickly. An extremely nice male nurse took me into a small room and told me to sit in a recliner. He placed a pillow behind my head and covered me with a blanket!!!! (I have thought about taking my own blanket to my previous Dr. appointments. The offices are always so cold, I feel like they think if they don't keep us cancer patients on ice we might spread!!!!) He told me he was going to start an IV and I told him that was fine as long as he got the vein the first time, I am usually stuck two or three times before they hit the vein. He said, like all the others before, "No problem, I'll get it the first time." Well, I guess he meant he would only stick me once, the fact he had to wiggle the needle around after it broke my skin in search of the travelling vein, didn't count as missing!!!! He then informed me the The Radioactive person would be in in a moment. The radioactive person came in carrying a small box. He placed it on the little table beside my damaged arm. When he opened it up I had to stifle a giggle, I felt like I was in a science fiction movie. He pulled out what looked like a 2 inch round stainless steel barrell with a needle on the end. He then told me it was radioactive isotopes, he was going to inject it into my IV and then we would wait 45 minutes to an hour for it to travel through my body before beginning the scan. After injecting the radioactive isotopes (I like saying that, It adds dramatic effect to my science fiction experience) into my veins he carefully placed the contraption back in his little box and dimmed the lights for me and left the room. As I sat there looking at the spot where I had been injected the room started spinning, black hair began growing on my arms and body, my eyes began to cross...
Just kidding..that was for dramatic effect too!!! Actually I fell asleep until he came back pecking on the door. He then led me to the little girls room to ensure I had an empty bladder for the scan. Then he took me into the room with the PET Scan machine. I was really glad I have lost 21 pounds, the table they have you lay on is only about 10 - 12 inches wide!!! He then wrapped a strap around the table and my body and strapped my hands to my sides. For a moment I almost started freaking out, internally, I can't stand being held down unable to move, I quickly forced my mind to think on other things. The scan lasted about 20 minutes and then I was through. And we were off to KRISPY KREME!!!!
I was so busy preparing for Grace Anna's shower at my house this past Saturday that it was early evening and I had not taken the time to do "therapy" on my mouth in order to get it open enough to put in my mouth piece. (I take it out to sleep at night.) So I had not eaten all day! I was so hungry and pressed for time that I decided to try to eat without taking the time for the mouth piece. To my surprise I was able to eat better without it than with it. It is much easier to chew and swallow without the hard plastic piece in my mouth. It sems like I get no more food going in the wrong places without it than I do with it. So I haven't put it back in since Friday. I am able to eat a larger variety of food without it!!! I had my first Krispy Kreme doughnut since surgery today and I was able to eat a Chick Fillet Sandwich!!!! (The doughnut took about 30 minutes to eat and the sandwhich I ate over a span of about 4 hours, but hey, better slow than not at all!!!) I may be getting closer to being FREE OF POTATOES!!!!!

Wednesday, May 13, 2009

Upcoming Appointments

We had an appointment with a radiology oncologist in Knoxville last Tuesday and I forgot to give an update on what we found out from him. I woke up that morning with stomach problems and came very close to just going back to bed, not having much hope that I would like this doctor. But I got ready and went. I'm glad I did. I really liked this doctor. He is at Baptist West. After examining my mouth and neck, he sat down and explained why he felt I needed the radiation. (Because of the way this cancer was tracking my facial nerves and because of the risk of it metastasizing to my lymph nodes.) He spent probably 45 minutes or more just talking to us and answering our questions. He has scheduled me for a PET scan (this next Monday, May 18th), to see if it has spread to my lymph nodes. I will return to his office on the 19th for the results. If it has spread I will need a much higher dose of radiation than I will need if it has not. Then on Thursday, May 21st I return to Nashville for my first follow-up appointment with my surgeon Dr. Netterville. Then I will be ready to start all the prep work for the radiation with the Dr. at Baptist West. He said the prep stuff will take about 7 days. I figure I will probably start the radiation treatments by the first of June. So much to look forward to!!!!! I will need probably 30 treatments total, one a day, five days a week, for six weeks. Each treatment will only last 7-8 minutes. He said the side effects tend to start being more severe after the first two weeks. He said the side effects are actually the result of the radiation build up in the body. I should not lose all my hair, just where it is radiated. It will cause burns on my skin where they radiate. I will have a sore throat, my mouth will be sore, my nose will be sore, and because my nasal cavity is open inside my mouth I will more than likely experience nose bleeds. Even having said all this, I felt much better after seeing this doctor. His "bed-side manner" was much better than the last Dr. we saw in Nashville. I try to deal with one thing at a time as far as dealing with all this, so my first concern is the PET Scan scheduled for Monday. Please help me to pray the Lord's will be done concerning what the results show. I am a little nervous, but I know if the Lord's will is done, His grace will be sufficient for me!

Monday, May 11, 2009

The Desire Of My Heart

It's been a week since my last blog, and although I have had things I have wanted to blog about it has been hard finding the time to sit down and do it.

My children and Aaron made Mother's Day very special, I received cards and beautiful presents. Stephanie cooked a wonderful lunch for all of us. (She received her culinary skills from Wendell not me!) It was like Christmas dinner. Since my surgery eating has become somewhat of a chore. My mouth won't open wide enough most of the time to get the food in, so it takes me a long time to eat a very small portion. Then my mouth piece fills up and the food starts to fill up my nasal cavity so I have to stop eating and go clean everything out. By the time all that is done it just doesn't seem worth the effort. So yesterday I put my usual teaspoon size helpings on my plate and began eating. After three helpings of food with only one trip to "clean" and as I was cutting my second piece of Butterfinger Cake it occurred to me that I was eating like a complete pig!!!! I made the remark that I didn't know what had happened but I have not been able to eat so well since surgery. Then it came to me.... On the way to Stephanie's after church I told Wendell that I was starving and that "I wish I could sit down and be able to eat just one meal and enjoy it like a normal person, just once." Immediately after saying it I felt guilty for complaining because I know there are people who would love to be able to eat as well as I do and also because I hate to say these things to Wendell because I know he feels my pain more that I do most of the time and I hate for him to feel bad for me. Sitting at the table at Stephanie's feeling as if I was going to literally pop, I knew the Lord had heard me. Even though it had not been an actual prayer, He had granted me the desire of my heart. What a wonderful God I have!!!! His love, mercy and grace are endlessly amazing!!!


Thank You to everyone who voted for me in the "Mother's Day Of A Lifetime" contest. I honestly don't feel worthy of any kind of special honor but it was a really fun, special experience. My favorite thing I won was the framed essay that Stephanie had wrote entering me in the contest. I will cherish that always. I am a very blessed mother. And to all those who have asked me to share... No, I haven't opened the wine!!!!




This was the first Mother's day without my Mother here to share it with. Mother's day is actually the holiday every year that I claim Wendell tries to get all his brownie points with my Mom. She, like Wendell, and unlike me, loved her flowers. Every year he buys her a hanging basket and we take it to her. She would always ooh and awww over it and they would hug and as usual she would think he hung the moon as he hung her basket for her. I miss that. This year he still purchased a beautiful basket and hung it in the usual spot for her. I like to think it still made her smile. I stole this picture of my Mom, from my sister Teresa's blog. I love this picture. My Mom was a beautiful woman.




Happy Mother's Day Mom. I miss you!!!

Monday, May 4, 2009

His Ways Are Perfect

Sometimes it's good to have time at home alone. I woke up this morning to an empty house, everyone had already left to start there day with school or work. I was feeling a little down, wondering what I am going to do, knowing I am going to have to have the decision made rather quickly. To be honest with you the thought of having radiation on my mouth scares me. I don't think I would be quite as scared if it were on a different part of my body, the thought of having my mouth and tongue burned for six weeks straight scares me!!!! Not to mention the fact that I will probably finally get to experience the dreaded feeding tube!!!! As I was thinking on these things I also began to think of Bro. Jones's message yesterday. It was about dealing with thorns in our lives, how Paul had a thorn in his life that he had asked the Lord to remove. I have not asked the Lord to remove this from my life, not because I don't think He could, but because I have felt from the beginning that it was His will that I go through this. I still don't know all the "why's?" and I may never know, but I know He allowed this to come into my life for a purpose and so it has been my desire to trust Him. As I was home alone today, I began asking the Lord for guidance. I want to walk this path in the way He has designed for me to walk it. I can't say at this point I have the clear cut answer but what I can say is I have a renewed sense of peace. While thinking on these things the Lord brought a song to my heart, I may not have all the words correct but it was:
"Knowing that Your ways are always perfect, I will trust You and I will give You praise. And as I look forth to what ever awaits me, I just want to stop and say Thanks!!!"

Saturday, May 2, 2009

Well, as I wrote in my last post, the news we got was not what we were expecting or hoping to hear. We had consulted with Wendell's friend, the radiology oncologist in Florida, after getting my post surgery pathology report. He was of the opinion, at that time, that I would not need radiation. What we learned from the doctor at Vanderbilt this past Thursday is.....If we were in Europe they would automatically do radiation treatments for this kind of cancer....here in the US doctors have varying opinions on the necessity of the treatment after this kind of surgery where they are able to achieve "clean margins" in the operating room. In other words some doctors say you definitely need it, some say you don't. We have great respect for the Doctor in Florida and know he will have our best interest at heart. I emailed him this evening, telling him of what we have been told here, and asking his opinion once again. We praise the Lord that we have him to consult with. This is a decision, that if you have an extra moment I ask that you ask the Lord to help us make the right decision on whether to go ahead with the treatments or not. I know I have asked for more prayer than I have ever deserved, but I feel sooooo blessed that so many are taking the time to seek the Lord on my behalf!!!!
I asked the Dr. about my mouth not opening and he said to keep doing what we have been doing, but to make it my main mission and focus every day. He said I have three months from the date of surgery to get it opened or the scar tissue will build so much that I will not be able to open it any further, ever!!! There is no surgery or treatment that will ever help once the scar tissue builds. Also, if I have the treatments I will not be able to open my mouth wide enough to get my tongue out of the way and so it will be, as the Dr. put it,"like having a severe sunburn on your tongue". He made an appointment for me to go to Baptist West in Knoxville this Tuesday to get started. He said I should get started with the treatments within the next two weeks.
At this point we have no idea what to do. To be honest with you having radiation treatments was not tops on my list of things to do this summer!!!!