Radiation 1/2 complete!

Troy was pretty sick on Christmas. His throat is real sore right now, he has had some bad nausea, and he hasn't been getting good sleep. He started taking his nausea medicine more frequently and that seems to be resolving the situation with the nausea. He started taking the pain medication for his throat again (he thought that was giving him the nausea) and that seems to be helping his throat. We just pray for the sleep to happen and that's just a crap shoot as to whether it will happen or not. It's just a vicious cycle that we know will end at some point. Anyway, he starts his 19th treatment Monday and has another short week because of the holiday week schedule at the radiation center. One thing that I can say is that he looks great and has been keeping his weight above his normal weight. He's made it his mission to not lose any weight by using the feeding tube for all his meals. He's pretty much hooked up to his gravity bag pole all day long (each can takes about an hour and he eats about 6-7 cans a day). He's doing great and has a lot to be proud about. Thanks, again, for all your prayers. It seems as though they really have been working! Also, we want to send special prayers and ask you for additional prayers to Troy's cousin, Pat DeSimone, who is going through a much harder battle with cancer herself. Our prayers to Pat and her family at this time. It's hard enough to go through this, but it's even harder to cope when it's around the holidays. God bless you all.

3 weeks nearly completed

Sorry, I've been slacking with the blog. The holidays have us busy lately and I just haven't had tons to write about. Troy has 22 more treatments left. He feels slightly fatigued and his tastes are changing. Acidic foods irritate his tongue/throat. He has been using his feeding tube for the past almost 2 days because he is noticing that his weight is starting to drop. He has lost about 5 pounds, but is still 2 pounds above his normal weight. He eats what he can and then he supplements through his tube. He is actually requesting the feeding tube food because he is wanting to be proactive in keeping his strength up. His throat is starting to feel sore, but he still looks great and is still getting around pretty well. The kids drive him crazy when they are loud, but they drive us crazy too! I guess they just drive him crazy to a higher degree. Our precious angels will be reveling in Santa's aftermath in one more week. Hopefully all the new toys will keep them busy for a while. If I don't write again before Christmas, have a wonderful holiday season and I will update you again soon.

1st week completed

We have made it through the first week of radiation. Troy goes every day at 1:20. It doesn't take long at all and so far his side effects are minimal. He feels a little sick to his stomach at times and has lost his appetite at times, but other than that he is doing well. He has one day each week that he sees Dr. Goldsweig and receives the Erbitux drug. That takes a couple of hours each time to do that. Today starts week #2. We have the next six weeks ahead of us and then life should start to go back to normal for all of us.

1 down 34 to go!

Troy saw Dr. Riley today and he looked down his throat again and still cannot see anything. He said that everything looked normal in his throat. Troy will continue to see Dr. Riley (he's the ENT/neck surgeon) once a month to have his throat looked at. After his office, we went to the radiation center and he received his first radiation treatment and it was really fast! I'm happy for this because I think it will make his treatments seem to go by faster. He is doing well right now. His only symptom is that he has a rash that is a common side effect of the Erbitux. His hair is starting to grow back slowly. We go to Dr. Goldseig's tomorrow for his weekly dose of Erbitux and he has his second dose of radiation next door at the radiation center.

I brought Jennifer to the airport yesterday and she is back in Arizona. Thanks for helping us out, Jen!! It has been so nice to have friends and family here. Although we will be happy to have our lives back to normal, the love and support that we have received is very heartwarming. I went to Lowe's today with Grandpa and Derek and we picked out the Christmas tree. The branches are settling tonight and we will start decorating tomorrow. I told Troy that even if he has to sit on the couch with a blanket and food being dripped into him, that we were going to have a great Christmas together. I'm feeling the same Christmas stress that I feel every year. If Ang and Donna weren't here for us, I might lose my mind, but we are managing just fine and people have been so wonderful. The gifts that we have been given are just such wonderful blessings. Thank you so very much to everyone.

2nd radiation update

Troy will start his radiation on Monday now. They have determined that there is a better outcome when the Erbitux is given a week prior to the radiation. Therefore, Troy is scheduled for Dec. 1st at 1:20 for radiation and his new end date is January 21st. He received the Erbitux today. We were at Dr. Goldsweig's for a few hours while the medicine dripped. He has been feeling crappy since he got home. He has a headache and chills. We're just giving him whatever he wants (i.e. chocolate pudding, lemonade, quiet time, etc.). He's a little (okay, a lot) cranky, but if he got through the 2nd round of chemo, we're confident that he will get through this and the radiation as well. I can't wait for it to start and then be DONE! Again, Happy Thanksgiving everyone.

Radiation update

Troy was supposed to start radiation on the 20th but due to the insurance company not approving it as of that date, his treatment was moved to tomorrow, the 25th. His end date is tentatively for the 16th of January. That is scheduled to be his last day of radiation. My friend, Jennifer Costanza, is flying in from Arizona Wednesday morning and will be spending Thanksgiving with us and be helping us out (even if that is just spending time with me to get away for a bit). She will leave Sunday morning. We have a lot to be thankful for this season. We have been blessed with family, friends, and people who are becoming our friends through their caring and thoughtfulness. We had friends from Troy's work who came and visited 2 weekends ago. Matt Taylor, Will & Heather Murphy (& Hayley, their baby), & Dave McFadden all paid a visit and ate wings with Troy. It was really nice for us to have some visitors. Will helped take care of our leaves in the backyard, Dave brought some wonderful goodies that his wife, Melissa, made, and Matt brought some yummy donuts and wine. We have received 2 out of 5 cleaning services (the 3rd one set for tomorrow - Yayyy!!!) that co-workers from GE put together for us. We have been also receiving meals from the Mom's group in our development nearly daily (many thanks to Kathy Marks, Diane Cohen, Teresa Bowling, Candice Hale, Marian Jenkins, Christy Elling, Stacey Parlotto, Debbie Watt, Denise Fossette, Maryum Goodwin, Dina "didn't have last name-sorry", and Stephanie Rosato for all their wonderful cooking). Kim Barfield owner of Carter's Gymnastics has given free visits to Derek so he has an outlet to go to on Fridays while Troy is receiving treatments. The other non-cookers of the group put together gift certificates for us - a massage, Outback dinner, and movie tickets. Amy Phillips and Erin Michel are the only names I have to give credit to for this, but I know I am leaving out countless others who contributed (please express our thanks to them!). Anyway, we really are thankful for all our blessings and hope you and your families have a wonderful Thanksgiving holiday.

Remission

Dr. Goldsweig officially classified Troy's cancer as being in remission on Thursday. He will still have the radiation in order to try and prevent any recurrence and we will meet with the radiation oncologist on Wednesday to confirm Troy's schedule with them. Thursday he is set to be at the oncologist's for a few hours to receive the medications he needs prior to the radiation. He just has to walk next door to the radiation office for his treatment, which he will do on Thursday. I'll update you after Wed/Thurs when I know more.

Updated pictures (July - August)

I have had a lot of people asking for pictures of the kids, so here are the latest that I posted to my Facebook page. Have fun viewing and we'll let you know what Dr. Goldsweig says tomorrow.

http://www.facebook.com/album.php?aid=42502&l=bc9fa&id=630303146 July

http://www.facebook.com/album.php?aid=42511&l=423ba&id=630303146 August

http://www.facebook.com/album.php?aid=42512&l=3b9dc&id=630303146 September

Yesterday & Today

We went to the radiation center at Wellstar Cobb yesterday and the doctor did say it will be 30-35 treatments that Troy will receive (6-7 weeks). He stuck his fingers down Troy's throat and agreed that he could not feel a thing and that even the lining of his throat felt soft and there was no hardness at all that he could feel which is a good thing. He was fitted for his radiation mask and quite honestly it was a somber day for Troy because it just brought to light what he is going to endure in the weeks ahead. He is scheduled to start the radiation on November 20th. We were up bright and early this morning to get his PET scan and I guess we will know more for you on Thursday when we meet with Dr. Goldsweig. Troy is in better spirits today. Hopefully we can keep him that way (or the anti-anxiety drugs can!) and we can enjoy the beautiful Fall Georgia weather that is sticking around. Thank you to Amy Phillips and Kathy Marks from Legacy Park (our development) who have organized more meals for us. Kathy brought over lasagna tonight that was delicious and there are many more meals headed our way from what I saw on the Evite. We can't say enough how many people have touched our hearts with their generosity and kind souls. Thank you very, very much.

No 3rd round of chemo - yaayyyyy!

After we saw the doctor today, he is recommending a new drug, Erbitux, to replace the Cisplatin that caused the damage to Troy's hearing. This will go alongside the radiation once per week (the radiation will be for the entire week). He will take the medicine and then head next door to the radiation center and begin a daily dose of radiation as his treatment. He goes to see the radiation oncologist tomorrow afternoon for a consultation and Dr. Goldsweig has set up another PET scan for Troy which he will be receiving on Friday morning at Wellstar Kennestone Hospital. We meet with Dr. Goldsweig on the 13th and from there we expect to hear how many weeks of radiation therapy Troy will receive. It may or may not be the 7 weeks that we expected. I'm sure the results from the PET scan will dictate this along with the doctors' expertise. I'm hoping we have some sort of "end" date soon! We can only tell you that we are getting closer to the end of this part of cancer treatment. We'll keep you posted.

Off to Dr. Goldsweig's in the A.M.

We have had another eventful week. Wednesday, Troy picked his parents up at the airport and then I went down and picked up Samantha. We had Derek's Halloween party at his preschool on Thursday and went trick-or-treating on Friday in our development. Derek was Optimus Prime from Transformers and Ryan was a devil (picture attached - this is us before we headed out the door). Saturday morning Sam and I were up early (before everybody was awake) and back off to the airport. Sam, it was great seeing you even if it was a brief encounter. Sunday I was a member of a focus group for an opinion on a Nissan minivan prototype that is to be produced in a couple of years. I got paid for 2 1/2 hours of my time and it was an interesting adventure. Troy, his parents, and the boys went to Derek's final T-ball game for the season. Yesterday was beautiful so the boys spent a lot of time on their new playset and Derek's friend, Jacob, and his mom, Torie, came to visit from down the street for a little while. We will be heading to Dr. G's tomorrow and I will let you know what Troy's next step is after we hear it from the doctor.

Eventful week

We have been on the go since the last posting. We have also been enjoying the time we have had with just the four of us. Troy's work pulled together money so we could have a cleaning service for 5 visits!! They gave us our first one on Wednesday and it was wonderful to not have to worry about keeping my house clean. Thank you, again, to everyone involved in getting that together and donating toward the wonderful gift. Ryan was brought to an immediate care facility Wed. night because he bonked heads with Derek while climbing over the couch pillows that they set up on the living room floor. He got a pretty good nose bleed that concerned me and he had been running a fever since Tues. night due to a cold so I took him in. He's perfectly fine now. Troy took Thurs. & Fri. off so we could all hang out together. We had a playset installed in the back yard for the kids on Saturday and we went to Hillcrest Orchards and then Burt's Pumpkin Patch on Sunday. Both places were pretty close to one another and it was 70 degrees out (don't be too jealous those of you in the Northeast!). We left the house at 10am and the places were about an hour north from home. I was constantly reminded that we had to be home for the Giants game at 4:00. They never show the Giants games down here so it is a big event when it happens. Yesterday Troy visited his new dentist who he likes a lot. We have been on a long search for the right one and we finally visited one that Hal Mendel had recommended and Troy likes him A LOT - thanks, Hal! Today we saw Dr. Riley and he had good news for us. He could not find any evidence of a tumor anywhere so he is giving that report to Dr. Goldsweig (we meet with him Nov. 5th). Unfortunately he is also giving him a report that Troy is suffering some hearing loss in his left ear due to the chemo medicine. I have mentioned that he has had ringing in his ears since his first round of chemo and the doctors have been monitoring that. He is scheduled to see an audiologist tomorrow morning. We will take the absence of the tumor over some hearing loss any day. We wish there could just be 100% good news to report, but sometimes we have to take the bad with the good. Anyway, I will catch up with you again in the next few days and let you know how it goes tomorrow.

Improving and doing much better

Troy's condition has much improved to that of a week ago. He went to Dr. Goldsweig's today and didn't have to be hydrated - he went twice last week to get fluids in him. He will see Dr. Riley next week on the 28th so he can determine the status of the tumor on the base of his tongue and then both doctors will determine the next course of action (3rd round of chemo or radiation/chemo combination). Troy can't stand the thought of the 3rd round of chemo. He wants to get on with the radiation. The 3 chemo drugs together have really been knocking him on his hind end. The radiation will be in combination with just one chemo drug. The fact that it's one step closer to the end of treatment is what is psychologically appealing to Troy as well. We'll just wait and see and let you know what happens next week. I just want to let everyone know that Mark Bleibtrey wrote a comment on the last entry and it sums up what we are feeling about many of the comments that we have received from people we grew up with. Although I don't have a chance to reply to the comments that come in, I just want you to know how surprised and happy we are to have heard from all of you. Some of them have come from friends we have had over the past several years and some of them have come from concerned relatives that perhaps we have lost touch with and some have come from former colleagues. However, the ones that have struck us especially are those that have come from former friends/classmates from some nearly 20 years ago that grew up with us in Whitehall. For those of you that don't know about Whitehall, it is a small town in New York on the Vermont border situated between the Adirondack Mountains of NY and the Green Mountains of VT. It houses a few thousand people. I still subscribe to the Whitehall Times and keep up with the local happenings and I see children in the paper who are now around 18 years old and are the children of my very good friends when I was 18! It is very heartwarming to receive such nice comments from people who are thinking of us and from people where so much time has separated us from them. Please feel free to email us directly at soothcage@bellsouth.net or troy.brooks@ge.com any time you want to speak to us personally. We are so grateful to all of you who are concerned about how Troy is doing. We brought Troy's Aunt Connie back to the airport today and we are solo here for the next week. It's a good week to be alone as Troy is doing very well and it gives us time to be alone with the kids. Pumpkin picking sounds like a good idea for the weekend!

Mon Tues Wed - A few bad days

Monday Troy got his chemo bag taken off. He's had a hard few days since Saturday. He tested fine on Monday and didn't need to get hydrated but he was feeling queasy, weak, and pretty much horrible. He developed thrush and had to get another drug added to his arsenal of medications. The Physician's Assistant, Brandon, added another nausea drug as well. You need to be a megaphysicist in order to stay on top of drugs for an oncology patient. There have been a couple of drug blunders along the way where we have one more or one less pill than we should have of something. Tuesday Troy went back to get his $6000 Neulasta shot which puts his white blood cell count back in order. He continued to be feeling crappy - literally. He started having a pretty good case of diarrhea around 5:00 and it continued to the point that I had to call the doctor's office at 3 in the morning and then run out and pick him up Imodium right after the call. Troy will love that I'm letting you all know about his bowel movements! It's a good thing that he doesn't ever look at the blog. I do read the comments you post to him and thank you for all your nice remarks. I'm sorry that I don't get a chance to write to you all personally. I have so many of you on my mind to get in touch with, but running the house has taken up so much of my time. I will catch up with you when we get through this battle. Anyway, today was another day where Troy spent all day resting and trying to feel better. He is actually sitting next to me in the kitchen right now trying to eat a cheeseburger and can only get a quarter of the way through it. The doctor's office called this morning to have him come in for fluids because of his rough night. His mom took him there while I picked up his Aunt Connie (Donna's sister) at the airport. She came down to help us from Virginia for a week. Donna leaves on Saturday and comes back down with Ang on the 29th. My friend, Samantha, is also coming for a few days on the 29th. Derek got picked up from school today by our neighbor, Marian, (thanks, Marian!) and stayed there playing with Sam and Josh until we got back. Ryan went to the airport with me and I chased him around from one thing to another. It's been a busy day and I'm tired. Hopefully I will have some good news to report soon. Troy is really being tested right now. His physical and mental strength and his faith are all being beaten down. We just keep cheering him on and praying things will get easier for him... and they will eventually. Thanks for keeping us in your thoughts and prayers. Oh, and thank you to Susan Ouellette, our realtor, who sent over her boys, Matt & Josh, to do lawn work for us today. And also to all the people involved at St. Catherine's of Siena church who have brought us over meals (or organized them). These gestures of kindness mean so much to us and make our lives so much easier right now.

Round 2 almost complete

Thursday we saw Dr. Goldsweig before we entered the chemo room. He told Troy that he should be very proud of himself due to how well he was doing. The fact that his weight was up and he was strong mentally and physically were all good signs. The doctor hasn't decided whether there will be a 3rd round or not at this point. We will have to have Dr. Riley check Troy out first. He has an appointment with him on the 28th. Troy had a bad night last night and we had to call after hours in order to get instructions for medications. He was very nauseated to the point of nearly vomiting. He still held back from doing so. He's feeling better this morning and he gets his pump off tomorrow afternoon. He may be heading to radiation soon if he doesn't get the 3rd round of chemo. We just have to wait for the doctor's orders. Speaking of the doctor, Dr. Goldsweig reads our blog so he told us that he's very careful with what he tells us because he knows it will be published! Hi Dr. G! This is a good opportunity for me to say nice things about him. He bought us lunch at Troy's first round of chemo (in fact he bought it for all the patients and staff in the chemo room that day). Thank you very much for that nice gesture and thank you for making Troy hate Steak 'n Shake now (I guess the meal you have during chemo, is generally the one you end up detesting for the rest of your life). That is one place on my list of not-so-favorites that Troy used to enjoy. I wish you would have brought in Waffle House take-out on this past round! But seriously, our apprehension and cynicism that we had in the beginning of this process has been lifted. We didn't know where to go or what to do when we were hit with Troy's diagnosis. Dr. Riley, who is very fatherly and fairly low key and we really liked and respected led us into the direction of Dr. Goldsweig. We met with him the following day at his office and he was high speed and quite the opposite of Dr. Riley. We weren't sure what to make of anything at that point and questioned everything. Dr. Goldsweig has brought us a lot of comfort and answered a lot of our questions over the past couple of months. He obtained a 2nd opinion from the Mayo Clinic on his own and called another doctor while we were at his office in order to confirm that his treatment route was the one to take. I'm sure he has done other things behind the scenes that we don't even know about. He and his staff are always cheerful despite what they deal with day in and day out and this rubs off well on the patients who are less than cheerful. We are in a great place and we just wanted to take this opportunity to thank him and his staff for taking care of Troy so well. As I said, Troy is heading back to his office tomorrow to have his pump removed and have his blood tested. We will catch up with you then.

Heading to Round 2

Tomorrow Troy will be getting his 2nd round of chemo. He went to the oncologist's office on Monday and his blood samples tested very normal. He didn't need any additives or anything. He is starting to lose his hair, but he has decided to shave it down to his scalp and looks rather handsome bald. Troy's weight is 4-5 pounds above normal and he is in fairly good spirits, but as you can imagine, he is not looking forward to tomorrow. Donna, the kids and I went to the Atlanta Zoo today in the rain. We had our umbrellas and raincoats and we were only one of about 4 groups at the zoo. There are 3 new cubs (4 months old) at the zoo and we all got a kick out of them - especially Ryan. We were under cover watching them through the glass so the trip was eventful despite the bad weather. We need rain here. It's been dry for a while in Georgia. Troy had a nice day to himself and was able to work in peace. I just asked him if he had a good day while we were gone and his reply was, "Very good!" I know we are really loved and missed when we aren't here!!! We will let you know how tomorrow goes.

Better few days

Troy has been much more lively over the last few days. He has color back in his cheeks and he has been eating and maintaining his weight. He has had no hair loss, but his ears are still bothering him. His mood has shifted and we aren't walking on eggshells as much as we were when I last wrote. He wanted to do some yard work this past weekend but his mother and I wouldn't let him. He needs to take it easy so he doesn't get so worn out. He is still a little fatigued, but doing really, really well from what I expected him to be. We went to Dr. Goldsweig's today for a follow up visit and he was really optimistic about Troy's prognosis. I hate to name percentages, but he said that he had an 85% or better chance at curing his cancer. He met with other doctors to review Troy's case at the hospital and they have definitely confirmed his diagnosis as oropharyngeal squamois cell carcinoma stage 4A. He just reiterated how much better this diagnosis is than the prior nasopharyngeal stage 2 because of the prognosis. He stated that the former prognosis was at 46%. This really uplifted Troy today. He has been working hard at eating and hydrating himself and it really shows. We don't have another appointment until Tuesday. Dr. G's office will just be taking blood samples before his 2nd round of chemo which is on 10/9. We'll let you know how things are going again soon. It may not be until next week before you hear from me again.

Last few days

Tuesday was another bad day. Troy really had a lot of ringing in his ears and really didn't even want us around because it's pretty hard to stop a 4 year old and 14 month old from making noise. He went to Dr. Goldsweig's and he loaded him up with fluids. He wasn't surprised that he was dehydrated because he said that everyone on that regimen of chemo has to be hydrated. He also had neulasta injected into him in order to increase his white blood cells since they were destroyed with the chemo treatment. Troy had to hang around in the chemo room and Donna stayed with him and drove him home afterward. Wednesday was a better day because Troy felt like eating as soon as he woke up. We went to the Waffle House. For those of you up North, there is a Waffle House about every 10 feet here in Georgia and it is Troy's favorite place to eat and my least favorite because it is the most fattening food I have ever tasted for breakfast. If it doesn't have grease or fat in it, you will not find it on the menu at the Waffle House. Oh, excuse me, they do have coffee, juice, and milk. Anyway, I was all for it because he can get about 1000 calories in him in one sitting. He had his ears evaluated in the afternoon by Dr. Riley and everything seems to be fine, but they are going to keep evaluating the situation to make sure that the Cisplatin isn't causing any damage to his hearing. Troy has been a little testy lately - actually a lot testy - but I can't blame him. He has a lot of changes going on with his body right now. Today he had his medications changed for sleep and anxiety because he is not getting real good sleep. I am actually going to sleep on the couch tonight so he can hopefully get a really good night's sleep. Gus, if you read this, I'm really sorry that Troy or I haven't gotten back to you. The days have been real busy with the kids. We have a busy day planned tomorrow as well, but I will try and get Troy to call you or I will call you myself. He has been real grumpy the last few days and has barely wanted to talk to us! He has been avoiding the phone (and like I said before, us/the kids) because it bothers his ears. Ryan was being real whiny this morning and you would have thought that cannon balls were hitting the house the way he was carrying on!!

Chemo removed

Today we went to the gastroenterologist's office to have him adjust Troy's feeding tube. He didn't sleep well last night because it was giving him a lot of discomfort because it was too tight. We also went to the oncologist's office to have his pump removed. Now one round of chemo is complete. Troy is very very tired and sick of the whole process already. He is trying to keep hydrated and fed like he is supposed to but he is having a hard time pushing his body to do the things he should. I can't understand the way he feels and my wanting to push him comes across as nagging. We need a full time nurse here to kick him into shape! Since that is not a reality, he will just have to put up with the nagging. Anyway, he's knocked out on Lunesta right now and will be seeing the oncologist tomorrow. He has some ringing in his ears from the Cisplatin that needs to be checked out. It's just another possible side effect of the medicine. I'm going to stay home with the kids tomorrow and Donna is going to drive him to his appointment tomorrow morning. Derek had a real hard time when we left this afternoon. It was enough to make us feel bad for the whole time. He forgot about it 5 minutes after we left. Isn't that always the way it goes?

One day closer to the end of treatment

Troy did really well at the oncologist's office yesterday. We were there from 9-5. It was a long day. He played his PSP games and we had fun talking to this other couple who had just started chemo treatment the day before. The man had lung cancer. He was quite a hoot and kept Troy's spirits up with his sense of humor. I think today it is definitely hitting him. He has been pretty nauseous and unable to eat and he is sound asleep now. There has been no vomiting. They pumped him with around 10 bags of medications and a lot of it was to prevent the vomiting. He has a take home pump of chemo medicine that will be removed on Monday. The kids and I went to the gymnastics center down the road this morning while Donna took care of anything that Troy needed. We have been trying to just let him rest upstairs, but we don't want him to be confined to his bed so we're going to try and get him downstairs some more. I'll let you know how the days progress. Thanks for the prayers and for thinking of us.

Chemo tomorrow

We are heading to the oncologist tomorrow morning for the chemo to start. As you can imagine, Troy is not thrilled, but the way I see it is that we are one day closer to this being over. We met Marcy & Hal on Saturday and they are just a very warm couple who is more than willing to be there for us through our ordeal. They understand every emotion we are going through and they plan on helping us get through this. Hal has even offered to go to Troy's treatments with him. Anyway, we are very grateful for our accidental meeting with them. Ryan hurt his leg today and I had to bring him to the doctor because he was limping around. He seems better now. Derek thought it would be a wonderful idea to give him a leg tackle! We went to the general surgeon's office yesterday for a follow-up to Troy's port surgery. Everything is fine there. He is healing pretty well from his PEG tube and I think he is even starting to get used to the fact that it is there. The nutritionist at the oncologist's office even gave us a case of food to try out. I told Troy that I was just going to mash up some food and syringe it in there! At least we can still laugh about all that is going on!! Donna & Ang bought Troy a PlayStation portable video game player so he will have some entertainment while he is sitting around receiving his chemo. The room he goes in to receive his treatments has a whole line up of leather lazy-boy chairs and every person receiving chemo for the day shares the room and shares their sad stories. Troy is planning on putting his ear plugs in so he can play Madden football and Medal of Honor. I don't think he will be trading stories! We'll let you know how he makes out. Talk to everyone later!!

School Fundraiser

Okay, this has nothing to do with Troy's progress, but Derek is doing his first preschool fundraiser. If you have any interest in Tupperware, here is the link. You can pay with check, cash, or credit card. They can ship direct to you for a charge of $5.90. Just email me if you have any questions. I have a feeling we won't really have a chance to go door-to-door selling this, so just let us know if you are interested in purchasing anything. Thanks!! Terry & Derek

http://www.new.facebook.com/album.php?aid=33693&l=e4a92&id=630303146

Angels

We received news the other day that the Mayo Clinic is in agreement with our doctor's findings. Troy will begin his chemo treatment this Thursday. He hates his feeding tube. He obviously doesn't have to use it at this point, but just having the tube out of his belly is driving him crazy. Donna is here now. She has been here since Tuesday. Some of the pressure with the kids has been alleviated. Derek has been having 4 year old moments here and there which contributes to my 40 year old moments and Ryan seems to cry when Derek is upset, so at times I feel like I will have a mental breakdown or anxiety attack, but so far I haven't completely lost it. Troy is just trying to stay even keeled and is doing a pretty good job of it. One doctor wants him to eat 2000-2300 calories per day and the other doctor doesn't want him to stuff himself for the next couple of weeks, so we have to deal with that conflict of wanting to fatten Troy up and at the same time not wanting him to be sick from his surgery. We live and breathe questions about his cancer and wonder if we are making the right decisions (probably me much more than Troy). I guess this is all supposed to be "normal". Anyway, everyone is sleeping, but all I do is worry but try and stay positive. At least Troy is getting rest like he should and that makes me happy. We are actually meeting with a couple (Hal & Marcy Mendel) today who have been through this same type of cancer over the past year or so. It's a long story how me met, but it was completely by accident. God just throws you angels sometimes.

PEG tube installed

Troy had his feeding tube installed this afternoon. He is sore but getting around pretty good. He is miserable because he's starving and his diet is limited to broth, jello, and juice. The MRI results have only confirmed what we already knew from the PET scan. Dr. Allen ordered the MRI just so it can be a guide for her to use in placing the radiation to the affected areas. We have a follow up appointment with the gastroenterologist on Friday.

P.S. Troy's star is very lonely. It looks like I am the only one that donated and put a message out on it. Remember, it's only a $1 minimum donation - see 2 postings back for the link to it. Thanks!

Heading to the Gastroenterologist

We will be going to Dr. Neal Osborn tomorrow for Troy's consultation for his feeding tube. His surgery will more than likely be on Wednesday. They were going to start Troy's chemo on Wednesday, but due to the conflict with the feeding tube, they are going to start him next week instead. This will be good because it will give him time to recover from his surgery. This is the third surgery (if you haven't been following along) in less than a month. Troy's hanging tough though. We started out the weekend kind of sluggish, but Troy talked to the radiation oncologist, Dr. Laura Allen, Saturday morning and she gave us a little more confidence in Troy's prognosis. She basically said that she believes that Troy was misdiagnosed from the beginning by the pathologist and they are pretty confident that they have a handle on what they are dealing with, and they have sent the slides and his information to the round table at the Mayo clinic just so they can all agree on their findings. Anyway, I don't think we will ever feel "good" about any news until they say that Troy is cured. Every time we receive good news, we still know that the battle is not over. However, we are in the fight, and will continue until we win.

SU2C

If you don't already know there is a 1 hour commercial free show on tomorrow night on all 3 networks at 8:00 called Stand Up To Cancer. A lot of people have asked us that if there is anything they can do, to let them know. I actually added a star to the constellation at the show's website in Troy's name (go to http://su2c.standup2cancer.org/constellation). You can search the constellation for his name (I did it under Troy and not Angelo) and make a donation as little as $1 or more if you want. You can then place any comments that you want under Troy's star. You can also launch a star for someone else who you know that has been diagnosed with cancer. We have plenty of food that has been organized for us. We have a great support network that has been formed. What we don't have is a cure for this horrible disease. Keep praying for us and give whatever you can to the doctors and scientists at SU2C so they can help develop cures for all different types of cancers that are out there. This is for the hope that none of you ever has to deal with this in your family. Please pass along the link to anyone you can think of. We have the MRI appointment today at 1:00. There won't be anything to report until probably tomorrow or Monday regarding the results.

Great News

We were at the doctor's office all morning. The great news is that the PET scan showed no sign of cancer anywhere else in Troy's body. As you can imagine we were overjoyed. The oncologist has officially renamed Troy's cancer as orapharyngeal. He said this is good news as well due to the prognosis being better. They are now sending his slides to the Mayo Clinic to review amongst other doctors/pathologists. Troy should be starting his first dose of chemo next week (Wednesday) unless they come up with something different between now and then. Fortunately, Donna (Troy's mom) will be coming on Tuesday.

Pathologist slides

The only news to report today is that we heard from Jacqui, the lady who is collecting our doctor reports and any other medical data to send to eCleveland Clinic for a free (pd for by GE) online 2nd opinion. She said that the pathologist, Dr. John Cochran ("If the tumor doesn't fit, you must acquit" - Troy will think I am the biggest dork for typing this!), called her personally to ask her to send the slides of Troy's tumor results back to him as soon as possible. We couldn't figure out what all this was about so we put a call into the ENT surgeon, Dr. Earnest Riley, and the oncologist's nurse, Karen, called us before we got a call back from Dr. Riley. She said the reason for the urgency with getting the slides back was because they were already working on a second opinion from Emory University and they wanted the slides ASAP so they could get Troy going with the best course of treatment. We like the fact that the doctors are collaborating amongst each other to give the best care to Troy. I guess we will know more tomorrow when we meet with the oncologist, Dr. Bruce Goldsweig.

Thank yous

Everybody is asleep in the house right now, so I thought this would be a great time to say thank you to everyone who has brought cheer our way. Thank you to Uncle Toogie and Aunt Frances for the flowers. Thank you to Torie & Eric Shores (our neighbors and friends) for the yummy chocolate cake. Thanks to Carolyn & Mike Sacco (Carolyn used to work with Troy in Syracuse) for the goody box with all of Troy's favorite sweets inside. Thanks to Angela & Bill Coryell (their son, Blake, is in Derek's class) for watching the boys all day long while we were at the hospital for Troy's port surgery this past Wednesday. Thank you to the entire GE management team (Dawn Wolterink, Brandon Smith, Brian Hinchman, Michelle Woock, Brad Hegemier, and Joe Egitton) for the HomeBistro.com gift certificate. Please let me know if I missed someone on that list as it was given to me by a third party. A second thank you to GE and any management involved in allowing Troy to work from home. This is HUGE for us and has alleviated a tremendous burden both mentally and financially. We cannot express how grateful we are. Thank you to Bridget McGrady (Bridget works with Troy in Atlanta) for the chocolate/fruit arrangement that was delivered. Thank you to Elizabeth Ministries and Cristi Kent for setting up food deliveries each week to our home. We received our first delivery yesterday from Elizabeth and Luis Albor and it was really tasty, so thank you to them as well. Receiving the meals from the folks at GE and from the people involved with St. Catherine's church is another unbelievable burden that has been lifted from us so we can focus on the kids and getting Troy better and not have to worry about preparing meals. The endless calls, emails, prayers, and cards that we have received are noteworthy as well. I know there will be many more thank yous to come, but I wanted to start somewhere by saying how appreciative we are just knowing that people are thinking of us during this difficult time that our family is going through. It really helps knowing we have this huge cheering section behind us. God bless you all.

PET scan completed

We left around 12:30 today and got home around 5:30 from the lab. The PET scan itself lasted about 20 minutes, but Troy had to sit around for an hour or more and wait for the radioactive injection to travel through his body. I took the boys to a nearby park and made the best of a day at the cancer center. Some guy with a metal detector talked my ear off and Derek killed ants while Ryan tried to eat rocks and leaves out of the sand. They had a lot of fun swinging and playing on the slide as well. Anyway, there isn't much to report until we meet with the doctor on Wednesday and he reviews the results with us. Troy is very tired today and I asked him how his pain level was and his reply was "I don't know. It's all starting to feel the same." I guess this will be helpful for any other pain to come. Have a nice holiday weekend!

News from nurse

This morning Troy returned a phone call to Karen, the nurse at his oncologist's office and she delivered some promising news. She said the testing that had been done on Troy's tumor for the EB virus (Epstein Barr) came back negative. This is good news because the presence of that virus tends to make the spreading of the cancer multiplied. Troy has been sore and nauseous all day, but is getting around slowly and will hopefully feel better tomorrow before his PET scan in the afternoon. We'll let you know how it goes.

Derek had a great 1st week of school. He really seems to love it and got all green stamps on his calendar (the yellow and red stamps are not good). If his clothespin gets moved on the stop light from the green light this means he didn't have a good day and misbehaved. It's still real early in the school year!

His preschool really packs a lot in for the 12 hours he is there for the week and he should be ready for Kindergarten before we know it.

First 2 Weeks After Surgery

I decided to start this blog because it is quite overwhelming to keep everyone that we love informed as to what is going on in our daily lives. This way anyone can check this whenever they want and I can get rid of all the frustration that I feel by typing it out. Hopefully Troy will feel comfortable enough to type once in a while too!

Quite honestly, the past two weeks since the surgery to remove his tumor have been hell. Troy has a list of about 10 doctors or facilities that he has been to for either consultations, follow-up, x-rays/scans, or surgery. His port placement surgery was today and he is in a lot of pain. That surgery was to place a device under his skin (on his left chest side) that will deliver his chemo medicines to him once he starts the medications. We do not know when that will be. We have a meeting with his oncologist on Wednesday.

Tomorrow will be a "quiet" day for us as the only appointment he has is with the dentist, which is only a mile from the house. They are requiring this appointment as a pre-radiation exam. The only thing we know at this point is that he will be having induction therapy. He will have 3 cycles of chemo (3 different drugs) to start and then it will be followed by 7 weeks of radiation which will occur on a daily basis. The doctor (Dr. Bruce Goldsweig) is taking an aggressive approach due to Troy's age and health. He has a PET scan on Friday and an MRI scheduled for Sept. 4th. This is to check and see if the cancer has spread anywhere else.

Troy and I have our moments when we feel like complete crap, but we try to pull ourselves out of that dark place to the best of our abilities. The good thing with Troy and I is that we counterbalance one another. I usually can pull him out of his slump and he snaps me out of it when I'm having a moment. Of course I try and hide those moments from him as much as I possibly can. Unfortunately this disease doesn't always let you be discreet.

I am going to try and keep this updated on a nearly daily basis, but quite honestly I may just be burnt out and not make it here as frequently as I would like to. It means a lot to us that you care. You can communicate to me via my email (soothcage@bellsouth.net) or just post something here if you want to. If I don't reply right back to you, it just means that I am probably wiped out.

The kids are great. Derek seems to love preschool. He started this week and goes from 9-12 Mon. - Thurs. His teachers at St. Catherine's of Siena preschool are Miss Betsey and Miss Cassi and I can't begin to tell you what a great support system there is for us through the church and preschool. And Ryan has been walking for the past couple of weeks! He has a temper and a smile that could melt glaciers! Derek knows that Daddy is very sick, but he is just happy when he is here - even if that means laying in bed and resting. Ryan is happy just being loved and fed.

Troy's parents will be returning soon (around the 9th of Sept.). They left on Saturday after staying for a couple of weeks. This of course is taking a toll on them as well as the rest of our families. I'm probably the only daughter-in-law in America who can't wait to see her in-laws!! Their help is invaluable to us and even though Troy is 35, he is still their baby and they want to be here for him. Thank you Donna & Ang and thank you to everyone for your prayers and concern, and know, more than anything, this keeps Troy and I strong. I really believe that he will be cured because so many people care.