The Drama just keeps on coming

Gary is just now finishing his 4th blood transfusion in the last 3 months. The hospital was undergoing an audit today and they brought them to our room because we have been here 5 times in the last 3 months and surely if there were any defeciencies we would find them lol. I am happy to say that my only complaint against St Vincents is the poor and spotty wi fi and lo and behold the head of the hospital came by and said they were in the planning phase of upgrading the wi fi. Hmm they listen cool :) I told the auditor I can go to McDonalds and be fine but I have to stand on one foot with tin foil to get wifi in some places here :)

The transfusion helped put some color back into big mans face hopefully he will feel better too. He starts back to chemo tomorow and then friday. The kids arent huge fans of this new chemo schedule we were at the hospital probably 20 hours last week and know this week we will surpass the 20 hours. They are okay with daddy being gone they know that he needs this care but they arent real keen about mommy being gone. Mommy is always around I am a costant in their life and lately I havent been able to be very constant. Please pray peace on them this is so hard for grown ups to deal with I cant even imagine being 10 or 12 dealing with this. This last week Merry asked Gary point blank what will happen if this chemo dosent work?? Gary answered her honestly "then the doctors will get worried" she has not been the same since that talk she is a smart girl she knows what that means :(

I do have to tell you of something really really cool this morning. We had gone home with the low fuel light on and the little light that says how long you can drive before empty said 7 miles. As I turned onto the main road I noticed a bunch of traffic and just prayed please God let us get to the gas station and like a minute latter the low fuel light came on and the miles light jumped from 7 to 25 and even though we were in 30 min of stop and go traffic we made it to the gas station with gas to spare. Such an awsome reminder to us that God provided for ALL our needs. I know I should have that lessoon DOWN by know but after updating our checkbook last night I was getting anxious again that we might not get thru the month and then God goes and does this and gently reminds me HE has our back. Thank you Daddy :)

Blessings on all of you this week and thank you for standing with us in prayer and thank you to the people who gathered on saterday to pray for Gary and a friend who both got devesdtating news last week. I can honestly say we could not make it with out all the prayers and love/ THANK YOU

This is my cake for our churchs harvest festival. I had great intentions of this grandios cake but with being at the hospital everyday with Gary last week and the bad news we got I did not have the energy or gumption to do the cake I wanted. I did this cake and I dedicate it to my sweet husband. HOPE it is a hard thing to keep right now with the news of the chemo not working and his liver failing all of us really just want to sit in the corner and cry but with Gods strength we will keep doing what the cake says :)

Gary update 10/29/10

Well the news following the CT scan is not good. The chemo has not been successful. They want to abandon the other chemo regiment and want to start me on a new chemo drug called Topotecan (to-po-TEE-can) starting next week on Monday.

The chemo will be every 3 to 4 weeks "depending", the doctor says. The only down side is that it will be for five days in a row now! So instead of Tuesday-Thursday...every day. I won't complain, especially if it's helping! With it being one drug, it shouldn't take as long as the old chemo.

We're hoping that this will be successful as part of my healing. The doctor said there are fewer side effects and it has been successful in neuroendocrine patients. This is a setback, but I'm holding fast to God's promises.

Thank you for your continued prayers and support. They truly help me stay strong in the fight when the temptation sometimes is to want to give up. Knowing so many people are thinking about me is such a great encouragement. God bless you all!

Gary update 10/28/10

I started day 1 of chemo seemingly without a hitch. I casually mentioned to the doctor during my doctor visit that Cindy had noticed a yellowing of my eyes so the doctor decided to recheck my bilirubin levels. He said they were normal two weeks before so he wasn't overly concerned.

Wednesday, we showed up for day 2 thinking it would be just a routine day 2 infusion. We went to head back for infusion when we were told that the doctor wanted to see us first. That left us worried and confused.

The doctor had checked the bilirubin levels and they were significantly up from 2 weeks prior. The doctor's suspicion was that one of the bile ducts was blocked which may or may not be cancer related. He ordered a liver and gall bladder ultrasound which I had this morning to see what we could find out.

The ultrasound came back inconclusive; however, they noted a "thickening" of the liver itself. This has led the doctor to believe that I have either "intrahepatic" or "extrahepatic" metastatic growth, meaning that either tumors are growing inside my liver and pressing on a duct or perhaps tumors are outside my liver pressing on the organ itself and compressing a duct. Either way, this doesn't sound like good news to me.

I go in in the morning for a CT scan to see if we can get some more information. If this is the case, the doctor feels it can be addressed by a change of chemo. I'm just concerned that the chemo I'm getting is supposed to be shrinking the tumors and now we're talking about tumors growing.

I'm discouraged to say the least, but still optimistic. I know the battle is the Lord's and He has the victory! This is hopefully just one more bump in the road to healing. I appreciate your continued thoughts, prayers, and support and for all of the cards I've received. We've hung every card up in my room to look at whenever I feel discouraged or am tempted to give up.

God bless you all!

More Drama

This weekend I noticed Gary's eyes getting yellow and I told him to be sure to ask the doctor about it. He did and they checked and his bilirubin is up and liver function is down. Today he went into the hospital and got a liver ultrasound and when we went into the doctor to get the result they said that the scan showed a thickening in the liver and no blockage. So no blockage is a good thing but it would be an easy thing to deal with unfortunately they believe that the issues are caused by tumors in the liver or outside the liver and pressing on the liver. I am not sure what that means for him. The doc just said that we would have to change the chemo he is going thru but I am not sure what they are going to do to help his liver function. This is yet another bump in the journey please pray for this family as we face this new challenge. Thank you for walking with us on this journey.

A good but hard evening (warning this could cause tears)

Tonight I went with my girls to one of the most beautiful weddings I have seen in a while. It isn't the money spent on a wedding that causes it to be beautiful it is the emotion and the love of the couple and they so had that. The bride comes from an amazing Godly family who have raised their daughter up to be a pure and virtuous young lady and the groom is a wonderful young man who I think is ready to take on the role as head of the house and build a life with his new bride with God as his partner in the marriage. I was sad going in to the wedding tonight but had my happy face on because I am truly so very happy for them but I was sitting alone without my groom and it was hurting pretty bad. I kept the tears to a mild stream all thru the wedding thinking back at the same things that we did in our wedding. The first act as a married couple was taking communion and praying together and remembering just looking at that young man of mine and thinking this is my HUSBAND, HUSBAND cool :) The times that I cried was when the brides daddy gave her away I thought "are my girls going to be able to cry as their daddy lifts their veil", "are they gonna have to tell their daddy not to cry" full well knowing he will ball like such a big baby on their wedding day. Am I going to be able to squeeze my grooms arm as we watch our daughters change their name. Is Merry going to be able to have her daddy daughter dance to "Cinderella" like she wants. The point I broke down into complete embarrassing sobs was when the Grandfather of the bride prayed over the happy couple and asked God be with them till one places the other into Jesus arms. It was a beautiful prayer but for some reason tonight my faith was low and I worried that the day I would have to lay my groom in the arms of Jesus was sooner than I ever imagined and it shattered my heart. I was so glad to have the hugs and friendship of the people at the reception but I bugged out before the bridal party got in there I didn't think falling down into sobs was a good idea lol. I am so glad I got to be apart of this evening I am so happy for these kids and I pray that they will be able to look back in 15 years like us and say that we love each other more deeply and completely than we ever though was possible.
Cassie also told me she did not want me to spend any money on the wedding or dress because the courthouse would be fine I busted out laughing thinking sureky she will change her mind but I am recording it here for posterity :-)

No chemo yet :(

Well we went to the doctor on Tuesday and Gary's blood counts were way off again so they postponed chemo and gave him several hours of fluids and a shot to boost the red blood cell counts. Wednesday I had to have him at the hospital at 6:30 for a blood transfusion. That went pretty smoothly and we were done and home by 3:30 in the afternoon still a very long day but not near as long as it could have been. When we got home we were blessed by a friend who ordered us some pizza for dinner. After such a long day thay was very welcome and appreciated. It looks like this evening that Gary is coming down with a cold along with the girls. The girls have immune systems so they will be OK but Gary does not have any real immune system left so this will be quite a challenge for him. Chemo should start Tuesday baring any other issues. Please keep this family in your prayers as we continue down this cancer roller coaster. I am so ready to get off the roller coaster :) please pray for Gary that his body fights off this cold and he does not go thru any more procedures or have to get poked any more his poor little body is pretty tired.

Chemo Round 3

Tomorrow starts Chemo round 3 for my sweet man. He has now been horribly ill mostly bed ridden for 8 of the 10 weeks that he has been doing chemo. He is so tired. We have sat up many nights till wee hours talking and me trying to do my best to encourage him and cheer him on. I am afraid that the constant pain in him is starting to take away some of the fight in him. The rest of the family is exhausted as well. The times that I don't spend encouraging him is usually spent holding one child or another crying about how much they just want the old daddy back. This has left me on empty myself I am trying to dig deeper into the Lord and get my strength from HIM but it is so hard when you cant even catch your breath. Life is just wont slow down the trials and tribulations. I wish I could just have enough time to catch my breath. I thank the Lord for friends who help cheer me on I could not do it with out you. Please remember this family in your prayers I know that you continuously lift Gary up for healing but there is a different kind of healing that needs to come in 3 small and one big heart we are all broken and exhausted and are desperately praying for a break.Thanks for running this Marathon with us dear friends

It has been a VERY long couple of weeks. Thank the Lord there has not been anymore hospital stays. He has felt really awful lately and has been in bed the majority of the time. Fortunately that changed after he had to miss Cassie's birthday dinner. It is a tradition on each persons birthday we go as a family either out to eat or cook something special well Cassie's Birthday was on Wednesday and he felt to weak to go with us out to eat. While we were gone he sat in bed and was racked with sobs he felt so bad about missing dinner. When we were out to eat Cassie passed me the note pictured it made me cry so of course I posted it on my facebook page. When we got home I told him not to look at the pic so of course as all good little boys he looked at it and the sobs started again. We ended up being up till 4 am talking and crying and he just sobbed that he has lost what ever life he had left and it was killing him. The next day Gary woke up 180 degrees different he came into our room and sat with us ,school work with us, watched TV and played with the girls it was like a light turned on. The next day was the same and on Saturday I was the proudest of him that I had been in a long while. He mustard up the strength to go to Target and order Merry's (the second October bday) Bday cake and pick up some prescriptions he rode in a little cart and even rode over and looked at video games. He came home with the biggest smile on his face. It is funny how much we take for granted in life but that simple trip to Target made him feel alive again. On Sunday he started to feel bad again but he was determined not to miss another birthday dinner and he didn't God Love him he felt lower than a snakes belly in a wagon rutt but he did it and it made Merry so happy she was BEAMING sitting next to her daddy and it made all our days. We have a challenging week this week a couple of dr apts and some new meds I have to learn how to give him and a pet scan that will let us know if the chemo is working and what the next treatment step will be if any. We also have the holidays coming up and I know this will be a challenge on many levels for our family not only to make it special but the finances to do so (medical bills are pretty big). God had shown himself so amazing this month we were blessed with a couple of weeks of meals a few restaurant gift cards a new bed (ours was long broken) and a new water heater to replace the one that broke on us.God never ceases to amaze me when I break into a panic about stuff which I do more than I should God just quietly provides in ways I would never imagine. The other day going to the Doctoro Gary was feeling so bad I thought for sure we were headed to the hospital I sat in the drivers seat and prayed God let me know if a hospital stay is in our future if he will avoid the hospital let the next song be a Davis Crowder Band song ( I know using fleeces like Gideon did is not what a mature Christian would do but I was desperate). When we got to the doctor they took one look at him and put him in a wheel chair and wheeled him right back to an exam room where he proceeded to get sick and I was so defeated I thought there is no way they are not going to hospitalize him but they said his blood counts were ok but he was dehydrated and gave him fluids and he felt better and we went home. God used that time to remind me when HE tells me something I need to have faith in HIM that he will follow thru with what He promised.

This week Lord remind me to listen to the words that you have spoken over this family and help me have the faith to believe you for everything and thank you Lord for always finding new ways to suprise me with your blessings you are a great daddy :)

Thank you all for your prayers! We got home from a two day stay in the hospital. The thought that he might have a pulmonary embolism so needless to say we were anxious. Luckily the issues he had and are still dealing with are due to his low blood count and blood level. They gave him two units of blood and it helped him feel better some. He still may be at the doctor getting fluids tomorrow but no more hospital yeah. For being such a stressful week it had some real blessings in it too. A good friend started a card and hat fund campaign and we ended up getting at least a couple of cards in the mail every day for the last week it has been such a spirit boost to look at all those cool cards we posted them on the wall for Gary to look at every day. The first night in the hospital I was supposed to go out with friends to celebrate my birthday bur canceled because of needing to be there for Gary. They got take out and came and ate it at the hospital with me we laughed and cut up and had such a great time. Words can never express to them how much that meant to me. While I was visiting Gary got to visit with a pastor from our church, his moms church, his parents and brother and wife. Other than the whole hospital thing it was a great night . That evening when they started blood the nurse who we had talked about faith with shared such a perfect word for Gary and I exactly what we needed to hear and when she hung the blood she prayed over each bag as she hung it and that really blew me away how cool is that. Even the oncologist told us to be blessed when we left. Gary's parents were life savers yet again they second day they brought me a sub for lunch and a fan to help cool the room down. The fan made sleeping so much nicer:). Then mom sweet mom watched my girls for two straight days and I think she deserves a saint hood for that. They are naturally full of life but when daddy is sick they don't always know how to handle things and they can lash out and for that she deserves sainthood ;) I am so glad to be home know I am exhausted but feel so blessed too we had people bring us meals and just love on us and it's been so wonderful. You feel like with a family of friends behind you and a God who loves us and sends just the right hospital staff that together cancer dosent have a chance it's going down. Thank you to all my angels this week you all will never know how much your kindness has helped this tired woman and a worn out man keep fighting. We pray Gods double blessing on you all.

" Lord, in my time of need, give me confidence in Your ability
to hear my prayer and Your willingness to grant mercy and grace."
Evelyn Bence 2010 daily Guideposts

This is a prayer I have "borrowed" from Evelyn because the dark uncertain
times can some times make me forget that God is still there and is that fourth man
in the fire with us.
Thank you Lord for never being too far away.

Bald really is beautiful :)

This week has been a trying on to say the least. Tuesday Gary went for his weekly blood test and we thought that he was doing pretty good but when we got the results back his blood levels were dangerously low. We ended up being in the hospital for him getting a transfusion and we were not released till 3:30 am. We walked into the house at 4am and Cassie and Merry came running out to hug us, part of me was glad to see them the other side of me yelled GO TO BED :). Wednesday was pretty much a day of sleep but that evening I think Gary hit an extra low point he discovered that his hair was falling out. Boy when his hair let loose it let loose by the time we made it to the hair place on Friday he barely had any left at all. I have to say it was a lot harder to see him get shaved then I thought it would be. I am pleasantly surprised at how good he looked after it was done. I told him he really was very sexy bald (I know tmi). In my minds eye he still has hair and when I look over at him it reminds me of the difficult battle he is facing. I told him if he choose to go bald I would LOVE it but knowing why he is bald makes my heart hurt every time I look at him :(. Next week on Monday he gets a porta cath put in which will be so great for him not as much pain so I am so happy for that but we have to BE there at 5 am I am not so happy about that lol.. then Tuesday if his blood is okay then he will start 3 days of chemo and then a shot on Friday to help his immunity then he usually sleeps the weekend away after the chemo. Oh did I mention I turn 37 that week too. I have some friends who are taking me out on Tuesday for my birthday that will be an oasis for me this week, The kids keep asking what are you gonna do for your birthday and all I can say sit in the infusion center and help Gary, past that I don't think anything :( One priceless bday gift is my sweet man here to walk into another year of life with. I am so grateful that My middle and youngest daughters birthdays will fall on an off week for chemo so daddy should feel up to being at their party.
We are in such a difficult busy season right now please pray for us as we head into the holiday season. I swore this year no matter how tired I am that I will make this Holiday as special as possible. Last year we barely thought about the holidays and they past with barely a mention from us and I swore this year will not be like that. Last thanksgiving Gary was just released from the hospital and the trip up north we were planning got scrapped and thanks to an inpromptu trip to publix we did have turkey and fixins but they were all microwaveable sides and it pretty much was pathetic :( This year IS going to be different Thanksgiving may come from cracker barrel or Sonny's (it will be a chemo week ) but we will make it special. None of us are guaranteed a tomorrow and we need to celebrate and make memories every chance we can. So let me be the first to wish you all a happy special almost holiday season make memories and make it special..

Depressed

I'm seeing the first evidence that my hair is falling out. I'm not taking it as well as I thought I would. I don't consider myself vain, but it's still difficult. Between that and all we went through yesterday with the transfusion, I'm feeling very depressed.

God, help me out of this hole!

Lord, I put my trust in You. Let me not be ashamed! Amen!

Such an inspiration - Facing the Giants

When you think you don't have enough strength, keep pressing on:

Gary update 9/3/10 - So long, Moffitt!

I had a follow up appointment today with my radiation oncologist, regarding my latest PET scan. He was in full agreement with my doctor at Moffitt that chemo is the best option right now and is pleased that North Florida Hematology and Oncology at St. Vincent's is administering it as the two practices are so closely associated with one another.

We also met with him to discuss an issue that has been burdening us since my last two visits at Moffitt. We have loved the atmosphere at Moffitt. It is a very hope-filled place and we have encountered some very good doctors there; however, in my case, things have not gone well.

We have been going to Moffitt every 4-6 weeks since early December and have never gotten anywhere. He has run test after test with no success. When my radiation oncologist wanted to do a PET scan on me months ago, my Moffitt doctor overruled him and wanted instead to do a contrast CT scan because he said it was "more reliable" than PET. I gave in then because I wanted Moffitt to be my central coordinator of care, although I could tell that it was against my radiation oncologist's better judgment. It did not sit well with me either. Just a gut feeling at the time.

Again several months later, my radiation oncologist again suggested the PET scan because he said we needed to find a consistent test to determine the extent and spread of the cancer. In this case, against my Moffitt doctor's advice, I permitted the PET at the local office. I'm glad I did. This scan clearly showed cancer in my liver and my radiation oncologist wanted to jump on it then, but again was overruled by Moffitt who wanted to redo scans their way.

The three phase CT was done and came back negative, so my Moffitt doctor said there was nothing there and that "a PET scan would never show something that the CT scan wouldn't". He wanted me to come back in three months for another CT. It was after our insistence to the point of getting ugly that the Moffitt doctor agreed to redo the PET at all, and refused to allow it to be done here, but insisted that I go back to Moffitt.

This is when the "inexplicable" result came back clearly showing cancer. Only then did my Moffitt doctor do a 180 and suggest chemo and more aggressive therapy. What if we had waited three months as he originally wanted knowing what the second PET scan showed? If this has become aggressive as my radiation oncologist and THEN my Moffitt doctor determined, three months could have made a big difference!

Something that also happened at our last appointment that I did not mention in my previous updates is that my Moffitt doctor made the statement when we were arguing about the repeat PET scan that it "wouldn't change your prognosis". That's when the ball dropped.

If you recall, a similar negative experience is what led us away from Shands to Moffitt to begin with. I put confidence in the doctor at Moffitt at the time because he is a supposed neuroendocrine expert, but we felt as though he was standing blindfolded aiming at a dart board hoping to hit the bullseye. His "won't change your prognosis" line was really the straw that broke the camel's back. I'll tell you why.

When a doctor, any doctor, makes statements like this, and gives the tone or speech of "no hope", they cannot be giving 110% to fight for me. No matter what the statistics say, miracles happen every day, and it is no doctor's place to put a label on anyone that says "you have x amount of time to live". Life and death are in God's hands. When a doctor plays God, he or she is basically just half-heartedly throwing one treatment or another at me, but he is not really standing behind me to fight with me all the way no matter what it takes. He has tried to steal my hope. I will not tolerate that attitude and I won't! I didn't tolerate it from Shands and will not from Moffitt either, now matter what their reputation.

Both of my oncologists here in town have given me the best of care. They have fought side by side with me through this all and have earned my trust because of their diligence and their commitment to never give up no matter what. So we asked ourselves, "Why are we driving hundreds of miles every few weeks and spending thousands of dollars [to this point] on hotel rooms and things in Tampa when we're getting nowhere there." Every appointment has been one disappointment after another.

When we told my radiation oncologist today about what happened at Moffitt, the "prognosis" statement that was made, and the implication that a well-respected radiation oncologist like him didn't know how to read a PET scan infuriated him, and he had a few choice words to say that I can't repeat. :)

My radiation oncologist is the head of radiology for St. Vincent's. His office is also closely affiliated with my general oncologist's office and they have a great rapport between them. I am trusting them with my life, and I know they are fighting for me from more stories than I can tell here.

So after a LOT of deliberation, prayer, soul-searching, and consultation with my radiation oncologist, we have made the decision to pull away from Moffitt and to move the center of my care to North Florida Hematology and Oncology under my general oncologist as my primary onconogist working with my radiation oncologist for any further radiation and scans that may need to be done. Everything will be local with doctors that I have earned great respect for.

I know this may shock some. This is a sensitive decision that we DO NOT take lightly. We have wrestled with this for some time. We know what I am facing, we have no disillusions, but I have faith in God for healing and that he will use this team of cancer "bulldogs" who will tenaciously fight on my side with me and never give up just as I don't intend to give up.

I believe we have made the right decision. I'm sure many may disagree, but please respect that we are doing what we feel it is best, and Cindy and I are both in agreement with one another that we are doing the right thing, and have confirmation in our spirits that this is the right course.

Thank you for your continued thoughts, prayers, and encouragement. Thank you also for those who have sent so many encouraging cards and letters and have helped us in so many ways. God bless you all

We continue to press ahead towards VICTORY!

Chemo started this week for Gary. I don't think any of us really knew what to expect. So far he has just been tired no other real side affects. Daddy spent about 25 hours at the doctor this week. We brought the kids with us on Friday (bottom pic) just so they could meet the nurses and so they can see where daddy is spending s much time. I think that really helped them and they were so excited that they were given a soda they thought any doctor that gives out soda cant be so bad :)Now Gary has 21 days off till his next round of chemo and it will start sept 14th and on that day he has an outpatient procedure to put a power port right under his skin so he will not have to get stuck 8 times like he did this week. My sweet man has been thru so much I think he must have had a gallon of chemo put into him this week. Now we just have to pray that all that chemo does its job and kills all that cancer. Please keep praying for his healing and Gods provision during all this and every round of chemo God has been so good to us I know he will walk us thru this coming season., ON TO VICTORY

Lord thank you for walking with us during this year of trial you have been the fourth man in the fire with us and we are so grateful. We now beg you Lord to let this chemo be the instrument of your healing in him and Lord we continue to ask you for your provision as for the funding needed to keep up this new therapy thank you Lord

Gary update 8/24/10 - Chemo day 1 and schedule

Ok, after 2 days going through the class and my first day of chemo (today), I think I finally understand enough of how this process will work to explain the schedule coherently.

Every three weeks (this week being the first week), I will have 3 days of chemo and one day of a just a single shot. This will be Tuesdays, Wednesdays, and Thursdays for the chemo and Fridays for the shot. Each day’s length will vary because of what is involved. All appointments will be in the afternoon (usually 1 p.m.)

Day 1 (Tuesday) – I will meet with the doctor, have lab work done, receive some anti-nausea medicine, and receive two different forms of chemo on day 1, one called Carboplatin and one called VP-16. Carboplatin takes an hour to infuse and VP-16 30-45 minutes, so between all that, seeing the doctor, etc., this will be by far the longest day.

Day 2 (Wednesday) – I will just have VP-16 this day. Also, to kill two birds with one stone, the doctor has arranged to do my Zometa the same day (it was every 4 weeks for Zometa, now it will be 3). So the time will be lessened in that I won't have the Carboplatin, but lengthened in that the Zometa will be added.

Day 3 (Thursday) – Just VP-16 this day. Short day!

Day 4 (Friday) – I will receive a simple injection of a drug called Neulasta which increases white blood cell production. Typically with chemo, the blood counts are lowered. If the white cells are reduced, this reduces immunity. This drug jump starts the body to produce more white blood cells than normal to reduce the impact on my immune system.

Even on non-chemo weeks, I must still report in one day each week (currently every Tuesday) to have blood drawn and my blood counts checked. I must wait for the labs to come back as a significant drop in blood cell count can be very serious and they can’t wait three weeks between to check it.

The chemo drugs have numerous side effects, so I have to keep a close eye on my temperature and some other factors and call the doctor immediately. I may have to go in unexpectedly if side effects arise.

The only other issue is that it has been recommended that I have a port installed. This is a tube that is run into a main blood vessel of the hurt. The port itself is under the skin, so nothing is exposed, but it allows them to hook my up without have to run an IV each time. We had a lot of trouble today getting the IV in and they’re concerned the my arm veins are collapsing with having had so many IVs so far. I’m still weighing this decision. Evidently it is a simple twilight sedation procedure that only takes about half an hour to implant.Everything is under the skin, so I can shower with it, swim with it, etc. and have no problems (almost sounds like a plug for a Hair Club for Men commercial).

I know this is a lot of information. I can hardly figure it out. Needless to say this is going to be time intensive and I’m not looking forward to it or any side effects.

I'm not looking forward to all the time and hassle involved, I’m hoping and praying that the chemo will be a success so it will be worth it. Thank you for your continued thoughts, prayers, and encouragement.

Follow up to 8/19/10 status - chemo

I guess they want to get going faster than I expected!

I got a call yesterday afternoon that my first chemo appointment is this Monday (8/23). Apparently I have to go through a "chemo class" that will take a few hours, then meet with the doctor, and have some lab work done. They said day 1 to expect to be there all day! If there is enough time after all this, I will get my first round of chemo on Monday, otherwise, it will be Tuesday.

Gary update 8/19/10 - Bad news

I  got a call from the doctor in Tampa today with the results of my latest PET scan and things don't look good from a medical standpoint.

The doctor says that not only did my liver light up on the scan as before, but that it shows that the tumors in the liver have grown even since the last PET scan. Therefore, the doctor feels that, under the circumstances with what he is seeing, he believes that the original diagnosis is incorrect and that I in fact have the aggressive form of neuroendocrine cancer instead of the slow-growing form.

Camp Kessem

The link above is a slide show of the camp that the girls just went to. I am blown away by the love and care that these UF students put into this camp. Annie said they listened to me and loved me it changed my life the other two echoing that sentiment. This slide show made me cry for two reasons one that so many children are having to go thru the pain of a parent with cancer and two that a bunch of college students would care enough to do this for strangers kids it is amazing. Merry still talks about slow dancing with a male counselor she said my first slow dance was with a dreamy older guy :) So So cool thank you Camp Kessem !!!!!

Camp Kessem and Forward

Last week the girls got to spend a whole week at a special camp for kids who have a parent who has or has died from cancer. From the moment they got there they were showered with attention counselors were their friends and all the counselors attention was on them they ate that up as those of you who know my social butterflies can imagine. Merry went to set up her bed and when she got back all the counselor could do was shake her head while Merry talked because she was talking so fast the counselor couldn't get a word in edge wise. I laughed and told the director I think she is settling in fine. Annie came home and told me that the counselors just listened to her and it changed her life, Cassie was thrilled she found and energetic girl to be her friend and they had fun "exploring" together, God love their counselors lol. I am so thrilled that they got that time to be away from daddy's sickness and just be fun energetic loud kids again. I actually found myself jealous of them a little while they were gone because the battle continued to rage on and Gary had quit a few bad days and sick days but we did have some very special alone time and we watched lots of faith filled movies and just enjoyed each other. We also wen out every night and got a coke Icee.
I can only imagine how hard this battle is on Gary he is such a trooper but he is feeling really bad and even the doctor commented his condition has substantially deteriorated ( not something you want the doctor to say ). It is so hard to see him go thru this battle I love him so much if I could donate a kidney or give blood or anything to make him better I would in a heart beat but I cant and it feels so helpless. The kids are having a rough time of it too they don't know what to do or how to be. They are angry and sad but they aren't sure who at so it has been coming out on me and their sisters. This morning they found out that we have to go back to Tampa this week for the second time in two weeks and they all got sad and so upset that we were leaving them again. I try to tell them it is not my choice but all they know is we are leaving them again!! The older two roll with the punches in that area pretty well but Merry my youngest she has so much anger over the cancer thing in her that she just does not know what to do and she ends up lashing out at everyone around her. It is getting so hard for our little family we feel like we are at mile 19 of a marathon so exhausted from what we have all ready done and we have SO much farther to go and we just don't know if we can do it. Will we all see the finish line or will I carry thru with my threat to drive off the buckman bridge with all of them in the car (dont judge me :) you know when you have had all your kids fighting after an all ready long day you have threatened such things ). Life is really hard right now for this family please pray for these sweet girls they so need grace and peace all they can see is no matter how hard they pray their daddy is slowly slipping away from them and they just dont know what to do. We all need a strength boost so we can stand firm in faith with Gary for healing and not dwell on what we see. Thank you for your continued support of this family we are so grateful for the love and care that we have recieved we are eternally grateful.

Update to 7/30/10 posting

I got a call today directly from my GI oncologist at Moffitt. I didn't get to the phone in time and he called twice within about a minute. This had me nervous enough because he never calls directly. He always has his nurse call.

When I finally was able to speak to him, he said that he had received my PET scan results from my radiation oncologist's office and reviewed them with a radiologist. In his words, the comparison is "inexplicable". He said he's never seen anything like it before. That shouldn't come as a surprise to anyone at this point since I just obviously have a weird body! He is bewildered that he and the radiologist both agree that the three-phase CT shows nothing on the liver but they can't explain why my liver is so brightly lit up on the PET scan.

The doctor would like to repeat the PET scan at Moffitt in "a week or two", so it looks like it'll be back to Tampa much earlier than we thought (originally I wasn't to go back until October 1). My PET scan currently scheduled with my radiation oncologist will be canceled.

The doctor wants to be sure I discuss the Sandostatin with my general oncologist her in town. Fortunately, I have a follow up appointment with them in the morning, so we can discuss that then. It's too early to do my next Zometa infusion and they can be done together, so I don't know if I'll get the first shot tomorrow or if they'll opt to wait until my Zometa infusion. That has yet to be scheduled but is usually sometime in the third week of the month.

Moffitt will be calling me to schedule the PET scan appointment. I'll let you know when I know for sure. The doctor says we will do the follow up on the same day, so I won't have to wait, thank the Lord!

Gary update 7/30/10 - Good news? Bad news? Who knows?

I had my appointment today at Moffitt for a triple phase CT scan of my liver. The results came back negative. I would be excited about that except that this disagrees strongly with the PET scan I had earlier and I am continuing to have pain in the liver area, nausea, vomiting, and other digestive problems. The doctor is dumbfounded over it.

He says he sees nothing on the CT which would indicate any cancer growth. He can't explain the nausea/vomiting or why I'm continuing to be heavily fatigued. He said that, although all scans indicate that I have the slow-growing type of neuroendocrine cancer, that many of the manifestations of the disease are expressing themselves like the more aggressive forms. He said he could tell that I had noticeably deteriorated, but is at a loss to explain why since he says nothing has changed that he can see with regard to the tumors.

Radiation round 2 is OVER :)

I am so happy to say that radiation round 2 is OVER, he made it. It has been a very long month for the whole family. The kids had a really bad time thru all this they had to watch daddy sleep all day get violently sick after the smallest effort with things. They would ask me is daddy getting worse he seems sicker. I can only imagine it is the most difficult thing for us and we comprehend most of what is going on they just know daddy is sick and they are afraid. They are so happy tonight to see daddy feeling a little better, when I called him for dinner Annie got the hugest smile and and said "Daddy is going to eat?" He has two weeks now of a medical break before we head to Tampa to get rescanned and get a treatment plan for the liver cancer. I am also so happy to say that God led us to the perfect car for us we recently purchased a Ford Expedition very used but in amazing condition this car will be such a pleasure to drive to Tampa in my youngest was so happy to realize we could take trips again because we have a descent working car finally. I am so thrilled with it I still cant believe it is mine but I will adapt :)

Thank you all for standing so strong with us thru this radiation/car drama we cant put into words how much your love and support means to us. This has been a marathon journey we are quickly approaching one year dealing with this one year , one really LONG year. Next month will bring the beginning of the liver treatment but it will also be a great first time experience for the kids the will go to a special camp for kids who have a parent dealing with Cancer. They got so stoked when they watched the you tube promo video and it said from the time they get to camp the kids only job is to have fun. I am hoping while they are in camp mommy and daddy can go to a hotel in Orlando and have some fun ourselves ;) Thank you again for loving and supporting us in this journey we could not do it with out you.

Lord thank you for the friends that share this journey with us and please Lord be with the friends who are running marathon journeys of their own.

Hanging in there in faith

We are at day 12 now of a 20 day treatment regime. He has had his up days and his bad days. His Liver pain is consistently hurting him even through a pain patch and several other pain pills. This journey continues to take its toll on the entire family. The kids have pulled me aside and asked if Daddy's is getting worse and I just have to remind them we are standing in faith for his healing and right now our faith is all we have. He has been able to continue to work from home he pieces together a work day sometimes at 12 am when ever he has the energy. We got a big blow this last week when my vehicle died we are believing God for a trustworthy vehicle one that will get Gary to Tampa and help us get him to all the appointments and treatments he needs. We continue to be proactive and look at used cars on a daily basis but nothing so it is truly in Gods hands. We have been thankful for my Mom who is helping the kids get to their activities and to Gary's dad and brother who is helping Gary get to treatments. As Independence weekend is on us I am declaring my Independence from worry. I have to let it sit at Gods feet, Gary's health, My future and my vehicle, its all safe and sound in Gods hands He has not filled us in on His plans yet but as long as He has his it under control we will be okay. Thank you all for your help, love and prayers and rides and lawn mowing we are so grateful for your love and friendship. 8 more treatments we can see the light at the end of the tunnel just praying it isn't the same train that keeps knocking us around lol. I look forward in faith to posting about how God has helped us get thru this radiation and how he will direct us to the right best car for us.

Count your blessing section:

We had a wonderful lady come a long way to pick up Anne and Cassie so they could go to their
water park youth trip.

Gary has had wonderful visits with his Dad and Brother as he has gone to radiation treatments

A lady at the doctors office turned Gary onto Ginger ale to help sooth his nausea and it works pretty well.

We had Gary's work send us a huge meal from Sonny's food that we ended up getting 4 meals from and just the meal itself was a blessing when your just so exhausted cooking is unimaginable.

We have a gentleman coming over this weekend to mow our lawn he called at just the right time when our yard is starting to look pretty over grown.

The multitude of comments and encouragement we receive thru facebook, it is amazing.


Gary's work

Thank you God for the many blessings you pour out on this family. Thank you for never leaving us or forsaking us thank you for taking care of every need you are the best! amen

The Marathon is getting LONGER

We are about to head into the second full week of radiation. The side affects have begun he is extremely tired all the time. He is very nauseous and is having swallowing problems. On top of all that his liver pain is increasing in severity and so is his shoulder pain. We are going to talk to the doctor tomorrow about adding in the shoulder to this radiation session. It will make him a little sicker but better to get as much over at a time as possible. It rips my heart out to see him go thru all the pain and suffering but it also makes me love him so much more because I know that he is fighting this as hard as he is so that he can always be there for me and his daughters. As if all the stress on this family is not enough my vehicle died this week. We have decided to take out a loan for a few thousand dollars to try to find a good used car. But we cant afford to make a mistake with this we need a car that will be there when we need to take Gary to appointments or to Tampa so we need God to put a neon sign over the used car for us :)

I am not sure what this week will hold for us I am not sure how much worse his side affects will get but I do know God is with us. We went to church today and let our spirits be refreshed in the love of God and the Love of the people at at church.
Thank you Lord for being our strong tower and refuge so that in these incredibly troubled times you always provide a place for us to be refreshed.

Whats Happening ......

Well it is the weekend and we have survived the deep (and I mean deep) depression of finding out the cancer has spread to the liver all the pre radiation tests and 2 days of radiation. That and I survived the addition of a week of vbs for the kids, taking them to church, stumbling thru my song for asl class, taking Gary to his appointments and taking the kids to swim team (God helped me out with rain showers for most of that :) I could not have done it with out some angels this week we have had 2 meals brought to us at just the right time when we needed it most and Gary's brother Michael and his wife Christina took some of the stress of me and took Gary to some of his non radiation appointments. We had an angel of a man and his brother come and mow our lawn. I also was able to chat with so many people in person and over facebook so any time I felt alone someone would be there to let me know I was not. I think it is really funny how you can be under so much stress that you just want to sit in the corner and cry and feel incredibly blessed all at the same time. We are defiantly living life on a day by day basis right now people have asked what I am going to do about this issue or that and just say when I know I will let you know. I am thankful for my mom living with us or we would not have any clothes to wear at all :) People have asked us how they could help us and I think the first thing is to continue to pray for wisdom, health and wise doctors. As far as anything else if anyone ever wants to bring a meal for us that would be such a blessing to me by the end of the day I have been so stressed and so out of energy that dinner has consisted of take out for us most nights. I am grateful for all the notes and calls and prayers we have received you all have held our hands up when we just could not do it by ourselves and I could never tell you how grateful we are. I know that with all of our wonderful family and friends and the most awesome church ever we will get thru this and we will have such a celebration the day that our faith becomes our eyes and we see Gary healthy and cancer free..

How I feel????

How do you feel?? As soon as we made it back to the room after finding out about the Liver Cancer the social worker came in and asked me that question and well at the time my answer was "like a mac truck just ran us over". We talked for a few minutes and then she let us alone to talk and the first thing out of Gary's mouth was "we really need to speed up you finishing your college". At that point fear set in, not about college I want to do that but fear over the motive for him asking that. The motive was with this news I know I am going to die and I want you to be able to care for yourself and the kids when I am gone. I got a little perturbed at him and told him not to ever think that way again or I will kill him!!! Once we got home I think the answer to how I feel changed to overwhelmed, I have three kids who don't understand why daddy is in so much pain and sleeps all the time. They just do not know how to handle whats going on with daddy and it is up to me to help them understand and deal with all that is happening. We are starting to see some behavioral issues and I know it is because of Daddy being sick but I am lost to try to help. I am waiting to hear the dreaded question again "is Daddy going to die?" Last time I got that question I told them honestly we are never guaranteed tomorrow so we just have to live and appreciate today. Today Gary woke up with an even more severe pain in his Liver the pain was so bad that he even had trouble breathing. The answer to the how your feeling question today was a numb fear. We had to call the doctors and they told us the radiation in the spine was more severe and the liver could wait till first of August. They gave him a pain patch that is supposed to be pretty powerful the prescription had to have the fact that he is a cancer patient on it for them to fill it. They did and now we are waiting the 18 hours it takes to start kicking in. I pray that when it does it will kick in big time and help him to feel better.This evening as I wasted time on Facebook games I was overwhelmed at the out pouring of love and help we received. It is such a blessing to know that the people that are telling us that they are praying for us are not just saying that and they truly are storming the heavens with us for his healing. We are both so tired and overwhelmed it is so wonderful to know that just like Moses did we have people holding our arms up. Tonight Gary really wanted a strawberry milk shake and he hadn't felt like eating anything all day so I went out and got him a milkshake at midnight ( thank God for steak and shake on the corner open 24 hours) I sat in the car for a few minutes just listening to the radio and one of my favorite songs came on and the verse goes "separated until the veil was torn moment that hope was born and guilt was conquered once and for all ...." That day hope was born so no matter what the doctors say they cannot take away my hope they aren't the ones who gave it to me to begin with!!!!
Tonight I am physically and emotionally exhausted I am overwhelmed at the gravity of the situation we are in, I am worried how everyone will cope with the challenges ahead, but I am hopeful that no matter what the next year holds for this family God has our back and will hold us in the palm of His hands. I am grateful for the people HE has placed in our lives that are coming in and relieving some of the pressures. Thank you Lord for ripping that veil and birthing hope for a hopeless world and thank you that even when my situation seems hopeless there is always hope in you. Thank you Lord for the people in our lives whose simple conversations have made such a difference in us and they will never now the impact they have had on our lives and our faith.

Gary update 6/9/10 - Not good news

I went in today for my PET scan and mapping for my upper spinal radiation. I am due for my "film check" this coming Wednesday, June 16, then my radiation will start the following day, Thursday, June 17, every weekday morning. I forgot to ask how many treatments it will be. I am assuming 20 like last time, but I'll talk to the doctor to be sure.

By far the most surprising and shocking news is what else the PET scan showed. I nonchalantly mentioned to the doctor that I had been having pain in my side a little but it wasn't close to any bone. We went and reviewed the PET scans and we discovered that the cancer has spread to my liver.

Gary update - 6/4/10 - Disappointed

We met with my radiation oncologist today to go over the bone scan results. In a nutshell, nothing showed up, meaning that I am NOT a candidate for the Samarium. We will have to go the traditional external radiation route.

The waiting Game yet again

Today I took Gary for what was supposed to be a quick bone scan done for the sole purpose to see if his bones soaked up the agent that the contrast is given in if it does than it is the same agent they deliver the radiation with so he would be a candidate for the systemic radiation (confusing I know basically scan is positive they will do systemic if it is not they will do external beam radiation). We got there and he came out in just a couple of minutes and he told me they gave him a shot and we have to come back in two hours, not what I wanted to hear but okay so we went to a local bakery and rewarded our patience with a goodie. We went back and they scanned him then made him wait then the radiologist said he wanted a few more pictures. They took pictures of his hips,ribs,spine and shoulders and made him wait until those were looked at. We were there from 10 - 3. We left EXHAUSTED and for Gary even more pain then he was all ready. Now we have to wait till Friday to find out about the scans and why all the other pictures. So it is hurry up and wait yet again we should be getting used to that lol. I could try to guess about things but I am just going to give it all to God whichever radiation he gets will be tough on him and God will be the one who sees us all thru...

Thank you so much God for seeing us thru every step of the road and I know you will help us down this new avenue we are going to have to go down. I look forward to the day when he walks in the healing I know you have for him, until then thank you Lord for not letting the storms over take us.

In the midst of what you are going to read Gary got his socks blessed off yesterday at his birthday party. He was surrounded by friends and family all celebrating with him and laughing and loving it was an amazing time. Thank you to all who came you will never know how much you contributed to the Garys moral..

This week has been a tough one . Gary has been in such unbearable pain that he has had to be on so many pain meds that he is only awake for a few hours a day . Its funny we have been congratulated all week on the good news that things have not spread but the cancer has intensified where it is and is hurting him so much the good news of no spreading doesn't seem so good. It is so hard to see him go thru so much and so hard on the whole family the kids are having to keep quiet while daddy sleeps and all the things we used to do together now I have to do alone the majority of the time. Wednesday I take him for a bone scan to see if he is a candidate for the systemic radiation and hopefully Thursday or Friday we will go back to the oncologist and start whichever kind of radiation he needs. Last round of radiation he cried in my arms saying he couldn't do anymore radiation. The pain has been so severe this time he is actually asking when can we start the radiation. This has been such a long haul and I think the whole family is just so tired, we all know to what radiation does to daddy and we are all nervous about seeing him go thru that again but it is necessary. Please pray strength for this family spiritually, mentally and physically and most of all continue to pray for Gary ,bless his heart ,he is trying so hard to be there the best that he can be and it is so hard for him not to be able to do the things that he wants to do and also please pray which ever radiation they choose for him it will work quickly and effectively.

Lord Jesus thank you for walking with us thru this storm I know your hand holding our is the only reason we have not sunk below the waves thank you Lord Jesus

Gary update - 5/29/10

I went to see my radiation oncologist yesterday. We were so glad that everything he said matched almost verbatim with what the radiation oncologist in Tampa had said on Wednesday.

He said that one of the main reasons a bone scan is the best way to determine if I'm a candidate for the Samarium or not is that the bone scan contrast uses the same medium that is used by the Samarium, so if the cells uptake the contrast, they will also uptake the Samarium. So if the lesions show dark meaning no uptake, I am not a candidate and if they light up, then I am a candidate.

Gary update - 5/26/10

Well I had my appointment at Moffitt today. Overall the news is very good. The latest contrast CT scan I had today showed no difference from the scan done in January. No new lesions have formed and it does not appear that the existing lesions have grown. The doctor admitted that it is difficult to tell with bone lesions whether they have truly grown or not, but there has been no spreading. Praise God!

The main point of our discussions centered around my latest pain developments. I have been having increasing pain in both shoulders which radiates down my arms and up into my neck, making it difficult to turn my head and giving me chronic headaches as well. The pain is worse on the right side, but it is present on both sides to some degree. The doctor said that, although the CT scan showed no new lesions, that does not mean that the existing ones may not have increased in intensity or depth, so he is certain that the cause of the shoulder and neck pain is due to the cancer. More radiation is going to be necessary, but the exact type needs to be determined.

Next Week

It is Saturday and I am sitting here thinking about all that is going to happen this next week.  Sunday thanks to Gods provision we are getting our car fixed.. It has had a radiator hose leak which makes the car run hot sometimes and we have to stop and fill the radiator with water, you can live with it thru town but when you have to travel lonely country roads to get to Tampa it gets a little scary, so I am so grateful that is getting fixed. Also on Sunday I get to watch my baby sing in the ensemble at church, I love watching him sing. Then the week hits a low point on Wednesday we head early in the morning back to Tampa for yet another doctors appointment and scan. This scan will be compared with the one a couple of months ago to judge how fast the cancer (notice I said the not Gary's)  has spread and where he will need radiation to help slow the growth down . Then Thursday I get to graduate two students from level one cake decorating they have been so fun to watch so I am looking forward to that. Friday is another low point we go to the radiation oncologist office ( did you ever think there were so many types of oncologists) to schedule the amount and frequency of the radiation. This is what I am really dreading 6 more weeks maybe of radiation the last six weeks just about killed him and me, by the end we were just so dragged down we were numb and I don't want that again but I know that is what he needs and if it will help his pain and slow that nasty cancer down it is worth it. I am just going to have to really plan for this one..Luckily my week will end on a high note we are going to have lunch on Sunday with a few of our dear friends some old ones some new to celebrate Gary's birthday. His birthday was actually April 30th but we were on our Memories of Love trip and when we got back his grandmother passed away so between those we are just able to get to his party. This will truly be a celebration of the strength and character that he has shown going thru all this cancer nonsense. I am really proud of him how he has maintained his faith and strength and continues to wage war against cancer everyday I am so proud to be his wife and cannot wait to celebrate him next Sunday. So there you have it the picture of a true roller coaster week. Lord have mercy and help us getthru with what little sanity we have left :)

Our last Art Therapy

Last night was our last art therapy and boy was it a heavy one. Gary and I have managed to keep the tears to a minimum thru the sessions but lost it last night.The kids wrote get well cards to Daddy which in themselves would have made you cry. Things like "I want to go camping with you again daddy" and "I just want you to feel good again". The things that made us loose it was our letters to each other. I told him how every time I saw an old couple walking hand in hand I plead with God to give me that gift with him. And how he was my prince charming and the keeper of my heart and I wished him complete health and no matter I will stand with him hand in hand thru what ever comes our way.. His letter made me cry at the time but made me breakdown latter that night I have to admit I need to reread the letter to get all that it said but the thing that shattered my heart was he said "if the worse happens I want you to find someone who will love you and the kids and be happy" He told me those are things that I wanted to get down on paper so you can never question what I want .. I only cried a little at the time but his written words rang in my head all night long and right before bed the flood gate of tears just burst..
Last week we found out that Gary's Cancer is spreading and May 26th we will find out exactly how much. May 28th he goes back to the Radiation oncologist to schedule more radiation. I am terrified that on the 26th the doctors will tell him that the cancer has spread so much that there is nothing more they can do. I know I need to put my trust in the Lord and I know that no matter the next step in our road God will be there HE always has been but I am tired and it is so hard. I barely made it thru the last round of radiation with out loosing my mind how are we going to get thru another round.

Lord of Heaven hear our cry and give us your peace that passes all understanding and help us to seek the refuge in your hands.

Gary update - 5/7/10

Our vacation to Orlando went very well. We visited Animal Kingdom and Sea World. Sea World was unmercifully hot, so hot that we left early. Fortunately we've been there before enough times that we didn't miss anything we hadn't been to before. It's amazing that there is virtually no shade in the entire park!

On Friday, my birthday of all days, despite a good day having breakfast with SpongeBob and other Nick characters and a great day playing in the pool with the kids, I began to slowly develop pain in my right shoulder. At first I thought little of it -- I assumed I had pulled a muscle or something. Sea World was Saturday, and we planned to go to Magic Kingdom on Sunday. Unfortunately, my shoulder got worse, radiating pain into my neck and mid back. We were also still worn out from the heat exhaustion from Sea World. Even the kids just wanted to hang at the hotel on Sunday. Fortunately the tickets are good for two weeks, so the plan is to head to the Magic Kingdom tomorrow and spend the day there, assuming that I can tolerate it.

My shoulder, back, and neck pain continued to worsen throughout this week. I finally went to the ER Wednesday morning because the pain was radiating into my head and my rib cage, making it difficult to breathe. The ER doctor was unfortunately and to put it diplomatically, a moron! He said that it was a neck sprain -- simple soft tissue trauma. We tried to explain with the bone cancer, it may not be so simple, but he didn't want to do a CT scan or x-ray because in his words, "you've already had enough radiation".

He prescribed prescription strength Ibuprofen, Lortab, and Valium (which he said is a good muscle relaxant). Of course the Valium has left me very tired and I was told not to drive, so I've been working from home this week.

Today I had a follow up appointment with my radiation oncologist. We explained the neck and shoulder pain I've been having. He agreed that the ER doc was an idiot and should have done a scan. He reviewed my last scans and said that there are cancerous lesions in my right collarbone and shoulder blade. He is sure that the pain is not soft tissue but is likely cancer related. That wasn't what we wanted to hear.

We explained that I'm going to Moffitt on 5/26 for a CT scan and the doctor there doesn't want to do the scan until all of the previous radiation side effects are gone. As such, my radiation oncologist wants to wait until after Moffitt to revisit my shoulder issue. I will meet with him again on 5/28. It is likely that I will need to undergo radiation treatments in my shoulder. The doctor doesn't anticipate any side effects from that except for fatigue, which I'm getting used to.

So once again things are up in the air. The doctor is going to speak with my doctor at Moffitt to see where to go from here. With the drugs I'm taking, they're keeping the shoulder and neck pain under control, but I know I can't stay on the Valium and function. I don't know if we'll be able to make it to the Magic Kingdom tomorrow like we've planned or not. I'm doing a little better today, so here's hoping.

We appreciate your continue thoughts and prayers. I know with the Lord's help and your support, we will make it through this.

Our Trip so far ....

Wow was this an amazing tip so far. Wednesday we went to Animal Kingdom , Thursday we decided to spend swimming in there gigantic pool and rest (what we needed most), Friday was Gary's 41st birthday and we started the morning off with a character breakfast. That was so much fun . We laughed when Squidward came out Merry screamed and went to hug him and as she did Dora came out and she did a 360 and yelled DORA and left poor Squidward hanging he looked at us and shrugged his shoulders. It was so cute after she realized what she did she worried all thru breakfast that she needed to go make things right with the dissed squiddy. All the kids participated in a parade with he characters and Daddy even got up and let them sing happy birthday nick style to him. When the characters came around Merry and Annie greeted them all with joy and all of them gave Gary hugs and Cassie ignored them it was beneath her 11 year old self to hug a person in a suit. Well when squidward came back around Cassie wouldn't hug him and he began to play with her hair and annoyed her to know end it was awesome Gary and I were cheering for squiddy ( we are horrible I know). We swam some and watched the pool side show. Cassie got picked for the day before show and even got slimmed. Friday was Annie's turn on the show but her team lost and she didn't get slimmed. We them all went and got tattoos, good family binding tehe, then we went to a special birthday show with spongebob and got our family pic taken with him. We all laughed that all the kids had their ages on the buttons while Garys just had what was either a bow or an infinity sign :) After the show Gary took the girls and played in the arcade with them. Then as per our family tradititon Gary got to choose dinner we went to the Outback we LOVED it the kids were not impressed so we decided for the money Outback will remain a date night treat. Today the kids crashed a girl scout pool party downstairs while we let daddy sleep in (he was not feeling well) then we went to Sea world fun park HOT day both Gary and I started to get dehydrated and felt horrible by the end of the day. Annie and Merry had a sleepover tonight and I felt bad they were as dehydrated as sus and so did not want to go, hopefully they will have fun. Tomorrow we plan to swim the morning away and then hit Disney in the afternoon. Poor Gary is in some real pain so I am not sure how tomorrow will work out but the tickets are good till May 13 so we have options if the big Guy is in a bad way tomorrow. Over all this has been an amazing restful recharging time. We have all so needed a break from all the stress of Cancer and life and this trip has done that for us no work,school or house issues NOTHING but rest and relaxation. Thank you Memories of Love for giving us a wonderful opportunity to build these amazing memories with our children. Ahh now to go back to that hard life of R and R. Hugs and Kisses from Orlando's Nick Hotel

WE ARE GOING TO DISNEY

In less than 24 hours we will be standing in DISNEY world. All though it is a little depressing knowing how we got this trip ( Memories of Love its like Make a Wish for adults) I am so excited to be going. I have wanted so bad to take my girls to Disney for a long long time but have never been able to now tehe. This will be a week filled with memories and special moments that the kids will never forget and neither will I. Thank you all for lifting this family up and I ask that you would say a special prayer for health on all while we are on this trip. Strength for Gary as we trek thru the parks and health on my accident prone girls as they swim and run around for a whole week. When we get back I will be sure to post pictures of the girls very first trip to Disney eeeeee I am so excited!!!!

Art Therapy week 2

This week was Art Therapy week number 2. This week we all did strong boxes. These are folded paper boxes that we wrote on the top in white crayon the things that made us strong and as we painted the paper the invisible white letters became visible. Inside the box held little secret slips of paper that held our fears. Some of my fears were "being a widow by 40" "watching my big strong man fade". Gary's mostly were about us about not being able to provide for us. One of his biggest fears is that if something happens to him we would loose our home (he is my knight). The kids came bounding back into the room and of course they told us there fears were things like " I am afraid of Winnie the Pooh" or "I am afraid of bees". As they ran out to get some energy out on the playground I did what every good mom would do so don't judge me :) I looked in Cassie's strong box and they did take it seriously but like we all do more often than we should the true fears where folded in humor. Tightly folded was " I am afraid Daddy will not be able to play with me like he did" and " I am afraid things will never be the same again". As tears filled my eyes I reassured Gary they are taking it very seriously and closed up the box.

The girls have clung to art therapy they are with kindred spirits this has been a group where they can be comfortable with everyone,the teachers are there for them and the kids are in the same boat as them. It has been great for Gary too because he feels like he is not alone there are others who are facing this horrible beast of cancer. He is seeing the faces of the other people in the group and realizes that the flood of emotions that we are going thru is not unique to us. I on the other hand I tend to put myself in go mode and try hard not to think about things I KNOW but it is easier to just to move forward but nights like these make me stop and really deal with the emotions that are there. These people aren't interested in a trite "I am fine" answer they dig and its good but wow is it hard.



God in heaven take heed of all those fears placed in those strong boxes and replace those fears with the peace that passes any understanding so that we can not walk in fear but in the blessed assurance that you are with us no matter what..

El Nino

We just got home from our second trip to Tampa in one week. Last week was our 3 day marathon trip to Moffitt and this week Gary's Grandmother passed away and her funeral was this weekend. In between time we started art therapy so it has been one heck of a week. People say keep your chin up this is just a season well it is an El Nino Season.
I was really glad the kids did well this weekend they have been so tired from our last trip I was worried. Tired children equal Hell for adults. They came in to the funeral and struck up conversations with everyone figuring out if the people were family or not. They so enjoy being with people I love that about them. Cassie made fast friends with a the granddaughter of Grandmas husband they chatted about everything from serial killers to terrorists (eleven and a half year old minds gotta love it). They are such good examples to me about how even when the world is one challenge after another and you really want to just sit in the corner and cry there is still a world around us that needs us to be a part in it. And there are still people that need us to be friends with them. We have a new week ahead of us and I am going to try to take a cue from my rug rats even tho we are going thru and El Nino season of trials there is still life to live and Friend to make and fun to have. So as a dear friend of mine told me to do I will go in to the week singing one day at a time sweet Jesus..

Side note the funeral was a lovely funeral very sweet and a wonderful celebration of Grandmas life. I told Gary that when I die I don't want simple I want a multimedia celebration with singers, smart light,instrumentalists and a program with pictures in it. He laughed and told me and a disco ball rising from your coffin with staying alive playing in the back ground :) I smiled and said yep now you got the idea tehe

Art Therapy

Tonight was our first night at Family art therapy. We started out the night horribly lost, then once we got there they informed the kids that instead of pizza they were going to have chicken salad on pita bread and fruit salad. Anyone want to venture a guess how the kids took that revalation :). We sat as a family during dinner or as my girls made sure we knew was really a snack, during dinner we got to meet all the staff. All the staff and volunteers were so nice everyone bent over back words to make this a pleasant experience, the lady in charge of name tags even said she would make Merry's doll a name tag next week (that just about made me cry). Then we broke up the kids went to their groups then the adults went to theirs. We shared how our children were coping with treatments and shared how hard it was to sit and look at our kids sweet faces and tell them that daddy had cancer, then I shared how I have had to Field pointed questions like "is Daddy going to die?". We all agreed how do you answer that. Everyone there had different forms of cancer and at different stages but we all had one thing in common our spouses had cancer that could possibly kill them and we had small children who we have to try to preserve their mental health while not loosing our own.
I was a little surprised my my feelings after the group I thought I would feel so much better but I really didn't. I am not sure why but when I got home a full on bummed out was my mood. I am happy the kids enjoyed themselves they LOVED the art and they are thrilled we will have a party on the 6th week at the Cummer. I haven't told them some of their art work will actually hang at the Cummer yet that will be the ultimate for them. Even though I am a little down tonight I cannot wait to go back one thing felt good being with people who were in exactly the same boat as us. I now have 5 new amazing families to add to my prayers.

Lord bless those families that were represented tonight bless them with your peace, provision for all the miriad of medical expences and health, touch their bodies Lord and heal them of this horribloe disease and grant those sweet children the gift of both parents.

Another Step on the LONG winding road

Well we made it back frim Tampa and with the help of my wonderful inlaws we came back with our sanity well sort of :). The apt was not what we had hoped. We were hoping to go in and they say the scans showed the cancer is stable, but instead they said the scans were inconclusive (the worst word in the english language) and they needed to do another round of different scans in 6 weeks. During the exam Gary told the doctor about the pain he has in his rib and shoulder and that the Radiation oncologist had seen something on the shoulder but he wasnt sure what it is, thats when the Doctor told us that he was fairly certain that the cancer has spread there and when we scan in 6 weeks we will confirm. WHAT SIX MORE WEEKS is what I wanted to say. If you are fairly certain then go scan his behind NOW.. He talked about adding more medicines to the mix in 6 weeks and then more radiation. It is just all so overwhelming sometimes. We ended up going to lunch crying a little then when we got back to the hotel we just sort of collapsed and thanks to Grandma and Grandpa we were able to actually take a little nap. By the time we woke up this morning we have sort of pulled ourselves together realizing that we serve a BIG God and we are surrounded with so many wonderful loving people how can we go wrong. So this journey has still got a long way to go but I thank you for standing with us and letting us know we are never alone. I am truly grateful for all that has been done for us from phone calls, facebook messages to meals it all lets us know we are loved and that you are standing with us.

Gary update 4/9 - Day 3 - Another "big day" fizzles

We had our visit with the neuroendocrine doctor today to go over the octreatide scan results. Another disappointment: The results were "inconclusive". He mentioned the drug sandostatin again and said that "statin receptors" in the neuroendocrine cancer cells are what uptake the octreatide. In my case, they are not. He says this does happen in 1 of 10 neuroendocrine cancers.

The “What If” game I have been sitting in this hotel room playing this mind game. It is not a pleasant game ,not helpful at all. It is so hard to wait for the doctors visit tomorrow!! It is like our whole peace and provision rides on that appointment tomorrow and I know all that is in God but it is so hard. I am praying that they will tell us “the radiation worked wonders and nothing has spread and all is well come back in 6 months”. What I fear they will tell us is” the radiation worked some but unfortunately the cancer has spread and he needs to quit work immediately and begin further chemo/radiation treatments” . Or even worse “the cancer has spread and there is nothing more we can do go home be with your family and get your affairs in order”.
Now I know that the “what if” game is not of God and I know that is not the thing HE wants us to do. I KNOW HE wants us to cast off all vain imaginations and put ALL our trust in the one who created us in our mother’s womb. My mind knows that but my heart is having trouble believing my mind. I guess a lot of the “what if” game is actually fear. Fear of loosing my husband and being a widow in my thirties. Fear over how in the world we will survive without Him. Fear over how would I ever learn how to use his checkbook software with out him . Then there is the fear of how will we make it if he goes on disability how will the mortgage be paid? Even working 50 hours a week I don t think I could make half of his salary. Emotionally how am I going to be there for my kids if we have to see daddy so sick again or worse how will I help them thru if we loose him. How would your daddy dying when you are a teenager screw you up mentally. I was 28 when my dad and it was horrible. I told Gary if he left me to raise three teenage girls alone he would rest in peace till I got there then watch out!!
OK maybe venting on all of my blog readers will get the “what if game” out of my head so maybe tonight I can sleep unlike last night  Thank you for listening to my irrational venting. I don’t have an impartial person to really sit down and unburden with so I really appreciate you blog readers very much. I know that you are praying for this family and I truly am grateful. You all are great listeners 
Lord Jesus I pray that you will fill my mind with your perfect peace the peace that passes all understanding….

Just for a giggle: I have a daughter who is almost thirteen full on into the ditzy teenager phase. Yesterday when we were waiting for Gary in the Lobby of the Moffitt CANCER hospital she looked at me and said it sure seems like there is a lot of people with cancer here? I just had to say well DUHHHHH where are we she answered ”Moffitt “ I said ok finish the name of the hospital and my 9 year old who is going on 29 piped in and said Moffitt CANCER hospital of course the people around here are going to have cancer gesh  gotta love sisters :)

Tampa bound !!!

Well we are putting the final touches on our trip to Tampa for yet another visit to Moffit. I have to admit I am pretty anxious. The doctors will will let us know how his cancer is doing whether it has gone down, about the same or has or spread. Please pray for us as we head down with three kids in toe. We need grace for the apt, grace for traveling mercies and grace for provision to cover expenses. Thank you all for walking with us on this journey we will keep you posted.

I am so proud of my Gary

I am so proud of my sweet man. He is finally starting to feel more like his old self and he jumping rite back into life. This weekend he is going to sing in the Church's Easter pagent he also is singing a solo in the communion portion of the program. This is challenging when you feel a hundred percent so I know this is really tough for him. I am also proud of him for picking up his guitar again. He had put his guitar down when the one doctor told him that he had two maybe three years left to live. I think he is finally coming to a place of trust in God that HE is the one who numbers his days not some goofey doctors. We have no idea what tomorrow holds for us but no one does. This month is a big month we start the month with a trip to Tampa to see of the Cancer has spread and then the 24th we go and see if there will be anymore radiation and then we get to forget about all the doctors and go to Disney at the end of the month. We also start family art therapy on the 13th. As you can tell this month is going to be a wild one for our family filled with fun and nerves. I covet your prayers as we enter into this month with so much going on.

Gary update 3/30 - 1 week out

Well, I'm 8 days past my last day of radiation. I'm doing better, but definitely not back to 100%. I feel about 80% right now, and I'm trying to pace myself. Pushing it takes me back down. I'm still wrestling a bit with stomach cramps and my appetite isn't what it normally is, which may not be a totally bad thing :) .

Trusting God

The last six weeks have left me pretty much emotionally bankrupt. It has been really hard watching my vibrant husband turn into a pail sleepy version of himself. You are going to think I am nuts but thru all this time my biggest worry and fret was that the kids will not have Easter dresses and baskets. I know that is not a huge priority but to the girls and I it is a priority I am not able to get them many clothes and haven't been shoe shopping in a long time, that is the same way when I was growing up but at Easter we got new clothes and shoes and in our Easter basket I always got my hair accessories and some resses eggs (favorite even today but they only made eggs when I was a kid now they do harts and trees and every holiday there is something:)and I was petrified the year we need a since of normal more than EVER we were not going to have that. Well I prayed and asked God to help and them went and bought the dresses and Easter baskets even when we really did not have the money. Coming home from the store yesterday God yelled at me and told me "you didn't wait for MY provision on this this dress issue!!!!" well I got a little snotty with God (thank you Lord for grace ;) "It was stressing me out and I just cant handle that right now and why were chatting you said you would help me God we need your provision on so many things and so far NOTHING". In tears I pulled into the drive way and went inside and checked my email and on there was a facebook from a lady who told me they had prayed for out family and they felt like God wants them to bring us dinner and would that help and be a blessing to us. I yelled at my computer YES IT WOULD BE.. So in one moment God reminded me even tho His ways are not mine HE still has things under control..And He cares about what I care about. He just felt the need this morning to drive that point home with me today when I dropped my girls off and was listening to the radio the announcer started quoting from Isaiah 43 and said several verses that went straight to my heart but the one that I remember most says something like when you are in the sea of storms I am with you and the water will not overtake you!!! He didn't say it wont get to your eyelids and your now breathing thu a straw but it will not over take me!!!!
Thank you Lord for your word, your servants who listen and most of all thank you for holding our little family in the palm of your hand so even if we are tossed about you will not allow the waves to destroy us..

Gary update 3/22 - Radiation Graduation!

I found out my radiation actually ended TODAY not tomorrow like they originally said! Praise God! So I'm done with radiation, at least for now. I met with the doctor this morning and he said I could expect the radiation side effects to linger for two weeks! Yikes! Of course, he said that it won't be like two weeks from today, I'll suddenly feel better. He says it will be gradual. Having gone through weekends with no treatments, I know that the side effects won't go away in earnest for at least two to three days. So I'm excited yet sick as a dog at the same time. I've been in bed most of the day today. This has been typical during my treatments, some good days, and some bad days. Unfortunately there have been more bad than good, so I apologize for such a long time between updates, but it's been a whirlwind of fatigue and sickness, and trying to find time for work and family in between. Needless to say it has been a difficult five weeks!