CT SCANS

Hi everyone. It is late and I wanted to give you the latest information.
We saw Dr. Barth today. He wants Gary to have CT Scans next Tuesday. We will have the results on Wednesday.
He is looking to see basically how the cancer is doing. He will compare the last scan to this one and then we will try and figure out how to move forward with Gary's treatment.
Short & Sweet and to the point.
Love,
Lisa

Memorial Day Weekend

Hi everyone.
So. I wanted to give you a brief update on Gary. Before I do - Did anyone see the Grey's Season Finale? The ending was so super cool and romantic and awesome! Okay. Back to Gary.

Gary is hanging in there. We have increased his medicine and we are hoping it works and he has fewer bowel problems.
Gary was supposed to take Zach to his baseball tournament today and he unfortunately was unable to do that. We had to shift gears and Gary and I switched places - he went to church and set up for me and I took Zach.

I have set the alarm for 4:30 AM because Zach has 2 more games tomorrow starting at 8:30 AM in Chino Hills (about 40 minutes from our house). Gary really wants to go but iin order to try to go he has to wake up and get going 2 hours prior to departure. He is hoping that his body will adjust by the time we have to go. I am keeping my fingers crossed.

Zach is having a great time this weekend. He LOVES playing ball. The boys will come with me tomorrow even if Gary can't. I think they will have a good time. The Field of Dreams is a really cool place.

I have a migraine. I am having a hard time getting to sleep. I do have lots on my mind. I really missed going to church today. I love seeing everyone on Sundays. I look forward to Sundays all week long. I won't miss out next Sunday! Sorry that I missed seeing all the families I love to see. I missed all of "my kids" too!

I am off to bed before I throw up from watching Gary's Food Network Iron Chef disgusting octopus nasty seafood edition!!! I swear there is not one thing they have made that I would eat! Last week the main ingredient was goat - goat this and goat that! YUCK! Vomit! I am so plain and simple.

Thanks for all of your love, support, kind notes, prayers and your thoughts. We hope and pray everyday that our trial will bring about triumph in different ways for each of you! God can always use tragic things to shed light on beautiful things! Look for the beauty in each day. I promise you that I am not just blowing smoke your way and telling you to do something that I have no intention of doing. Gary and I both take each day as it comes and we always are looking for the good and beautiful things!

I have a friend that I have been praying for for years and years. My prayer was that eventually in God's time He would lead her to find Him. I did not know how He would do it and I thought it might never happen. T - Our family loves you and I know how many questions you have. Don't give up. Remember - FAITH is the foundation and so many things are so difficult to understand when you want to believe and you want to have all the answers. I am just really happy that you are on this new journey! Keep travelling the road..............I learn something new every day and I continually grow in my faith all the time.

Bye for now. Drive safe and enjoy the rest of your weekend. I will update Tuesday night after we see Dr. B!


Love,
L&G (isn't that a Steakhouse?)

Bright Spot

Guess what? We are home! No transfusion necessary! We asked if the office could check his counts this morning before we went for the transfusion. They checked him and he went from 8.6 to 9.5 overnight! It is a victory as small as it may be! Gary needs every small victory he can get!
So, I can relax a little more today and not be so rushed!!
Happy News!!
Have a great day!
Lisa

Rough Week

Hi there. If I had a tail it would be between my legs as I apologize for not updating sooner. I am taking flack from everyone and so here I find myself sitting in my office and trying to figure out what I will say to all of you.

So, Gary had chemo last week. Dr. Barth has switched his chemo to one that he thought Gary could "better tolerate". Well, I am no oncologist but I would venture to say that Gary has not tolerated this chemo any better than the last chemo.

Gary is a mess. It is super hard for him because he looks so incredibly good. If you saw him you would remark on how great he looks and how well he seems to be doing. Gary does not want any of you feeling sorry for him so he tries not to let anyone around him see what he goes through in our house every day. He has an amazing capacity for acting and does a great job covering up the intense amount of pain he has right now.

He does not read this blog so I will share a little bit with you. Here is the problem he is facing right now. This is so medical but i will try to simplify things for you the best I know how.

Gary has extensive spreading of his cancer to his pelvic region. He does not have bone cancer or any cancer in his blood, marrow or organs. It is basically in the tissue surrounding everything in his pelvis.

He received radiation (26 doses) that ended in March. Here is where things get a bit complicated.

The radiation keeps working and attacks the cancer for a 4 month period of time after the very last dose. So, even though he is not currently receiving radiation it is still having an affect on his body. This is good but it is also bad.

Due to the extensive nature of the cancer the Radiation Oncologist had to radiate his ENTIRE pelvic region. Normally, they pinpoint tumors, map them out through high-tech scans, and then blast the tumor with targeted radiation. They could not due this with Gary because of the number of tumors he has.

So, there has been excessive damage to Gary's intestinal track. If the lining of your bowels (intestinal track) is supposed to be thick like a bounty paper towel that holds even the thickest of spaghetti sauces Gary's is as thin as the cheap 1-ply toilet paper you can buy at Big Lots! His bowels are extremely irritated and I bet if you tried hard enough you could imagine the complications and problems that arise from bowels that are riddled with 2nd degree burns and are capable of tearing very easily! I refuse to embarrass Gary by giving you all the sad details but I will tell you that even I have a very hard time watching him go throug what he is enduring right now. He is absolutely miserable and spends almost every night awake ALL NIGHT LONG because of these problems. I guess that means I am running on an empty gas tank as well because once he is up I am awake as well!

So, the chemo causes what doctors call Radiation Recall which in essence "recalls" the injury to the bowels that was done by the radiation. Do you understand?

I guess we are at an impass. The chemo causes Radiation Recall and the new molecular therapy can potentially cause a hole to be blown through Gary's bowel system as its only side effect. What to do next?

I am unsure but I do know that his red cells fell to 8.6 today and he is scheduled for transfusions tomorrow. He has been in the outpatient office every day this week receiving high doses of steroids to hopefully calm his intestinal track down. He has also been receiving hydration and I told him I would love him even if he blows up and looks like the Stay Puft Marshmallow Man from all the roids!

Wow. Lots of info. I hope you can understand it. It seems so difficult to explain sometimes. I am sorry if I lost you. I tried.
Please pray for Gary's endurance and patience. Pray also that he heals and we can move forward.

Thanks for letting me bend your ear. I am tired and want to watch Grey's!

Love and Hugs,
L

Tooth Fairy

Let me start off by welcoming Gary's parents to the world of Blogging and Internet use! We have been waiting for them to get the internet and be able to keep up with our crazy life and finally they are online and keeping up with us! Welcome Welcome Welcome!!

Ok. For the past month (literally) Jax has been asking me to pull out his loose tooth. EVERY SINGLE DAY. Granted, the tooth was loose but not loose enough to yank. Over the past 2 weeks I have gently tried each day when he has asked to pull his tooth. The tooth was ALMOST ready but it was hanging on by 1 stubborn root. He waited. And waited. And waited............

We have tooth! Today, after school, I finally pulled his tooth out! I do not remember either of the other boys being as excited as Jax was to lose this dang tooth! He was GLOWING and BEAMING! The boys were so great and gave him a smile and a hug to congratulate him.

While I was watching and participating in all of the hoopla I began to feel sad. This is the last of the "losing of the first tooth" for me. Trust me when I tell all of you that I AM NOT the sappy Mom who cried on the first day of kindergarten. I have always been so excited for my kids to do things and experience different things. Don't get me wrong. I was excited but there was a touch of some underlying sadness involved! I will get over it.

The tooth fairy was successful in coming to our home tonight and leaving $5 for Jax! Sometimes our tooth fairy is not so punctual. Sometimes the kids think she forgets. However, when I explain to them that she probably did not come because one of them got up in the middle of the night to go to the bathroom and scared her off they understand and try again the next night. Darn tooth fairy. Why does she have to come at the exact time they get up to go potty?

Gary is snoring next to me. His arms are up over his head and he is finally comfortable for the first time in days. The chemo kicked his butt. He felt sick and nauseated all week. He finally feels a bit better today but he has a lot of abdominal pain. We went to the doctor today and all of his blood work was perfect! He is holding strong and we will see Dr. B next week to check in. Last night Gary ate 2 Western Bacon Cheeseburgers and about a 5inch X 5 inch piece of Upside Down Cake! He eats like that all of the time and his cholesterol is only 139! He has low blood pressure and a resting pulse rate in the 60's. He eats like crap and does not exercise. What's up with that?

I am going out to breakfast and a movie tomorrow morning for Angela's birthday. It should be a great morning with girlfriends. I am really looking forward to it.

Home Group is this weekend and we are swimming and having a bar b que at our house! After church on Sunday we are taking our 3rd through 6th graders Rock Climbing at Solid Rock. I love that outing with the kids! Oh yeah. Baseball all day Saturday and tomorrow night we have a pizza party after Zach's practice.

School is almost out and summer is almost here!
Have a great weekend!

Love, L

May 12th

Six whole days have gone by without a posting. I am so sorry. I must have been busy and tired at night. I guess that is the time when the vast majority of the blogs are written. I have let my voicemail fill up and it has been nice. I will clear it tomorrow but that does not give you the license to leave me a voicemail! Text me or E-mail me! That way I can still get things done and respond to you!

Gary had chemo today. Different regimen. He will be taking Oxciliplatin (I think that is how you spell it but I am too lazy to google it right now) and Gemzar. Dr. B will also add in the Avastin (molecular therapy) as soon as Gary heals. Can you believe we are able to do the molecular therapy? I was STUNNED this morning. I still do not quite understand how this is happening but we are both thrilled at the opportunity to have the chance with these drugs! I had to sign our financial lives away today and we are hoping and praying everything will get covered. We have over a 95% chance that all of the drugs will be paid for so we took the odds! I hope we don't go down on the river!

Gary is pretty sick right now. He was supposed to go to see Iron Man tonight with Jeff but he is not able to. He has not moved since we brought him home around 3:30 today. He has eaten a few saltines and he even shared a few with Hobie (who was obviously on the couch with Gary and has worse manners than the kids)!

This new drug gives Gary an extreme intolerance to cold and his hands are tingling. He also is nauseated and has a general ill feeling.

The boys are taking showers and getting ready for their 7:30 PM bedtime routine. What a mean Mom I am! None of their other friends go to bed as early as they do! I am playing the violin to them once again! Poor boys. They suffer so much. Wa Wa!!

Zach bought the boys a DS game - Pokemon something rather. The boys were so super excited and they both embraced Zach when he presented them with the game they have been wanting. Zach is a money saver. He has money still from his birthday in 2007 and he is such a gift giver.

I cleaned out the fridge tonight and made a smorgasbord of leftovers for the boys. It feels good to get all of the leftovers OUT! I hate leftovers that have to be tossed.

Angela and Jeff brought the kids over last night for dinner and to celebrate Mothers Day and Jack and Jeff's birthdays! We had a relaxing Mothers Day and the boys gave me the greatest cards and homemade bath salts. They really spoiled me for a while!

I am off to get the boys situated and get myself to bed so that I can watch the countless shows I have TIVOed and have yet to watch. I was up all night with Gary last night and we watched a few shows together. I thought maybe my reality shows would bore him to sleep. I think Desperate Housewives did him in! :)

Have a great night and we will check in tomorrow!
Love,
L

Not every day is a good one

Hi. Today was not a good day for either one of us. Of course we both had different reasons as to why our day was less than great. I know that I can't be up everyday and I also know that Gary won't feel even halfway decent every day.

Gary woke up in considerable discomfort. He informed me that this is the way he feels every single day of his life. To live with someone you love so much that endures so much is overwhelming. Every single day Gary deals with the fact that he has Stage IV Metastatic Cancer. I can hardly imagine. It makes me sick to my stomach if I really stop to think about it.

This morning I got a call from our Aetna Patient Advocate who told me that Gary was denied the drugs we need because the medical director deemed them to be "experimental" on the bladder cancer front. These drugs are approved for many other cancers but the FDA has not officially approved them for Gary's cancer.

So, more paperwork. More fighting. Appeal to the insurance company. Can you believe a medical director at an insurance company is going to tell our TOP oncologist what drugs he can use to treat his patients? It blows my mind.

I am really down. I am sad and mad and frustrated and disgusted and my heart hurts for Gary. I do not get down like this very often. The thought of living my life without Gary and our boys not having their father causes terrible pain in my heart. I start to feel anxious and it is hard for me to refocused when I get this down.

Rest assured..........I ALWAYS bounce back. ALWAYS. It may take me a good day or two but I do. Prayer, rest and focus helps me to get back into the swing of things.

Bonnie came over this afternoon and we went shopping and to the Claim Jumper for Tortilla Soup and Potato Cheddar Soup. I love Bonnie. She is one of those people that seems too good to be true. She is ALWAYS kind, ALWAYS smiling and so amazingly sweet and loving. My girlfriends are so super important to me. They bring sanity into my life and help me to stay grounded. Thank you Bonnie for an afternoon to get refreshed! :) Let's paint our nails soon!

Last week Monica hosted Bunco and had a small boutique in her house. It was so nice to relax and hang with my "baseball friends". Monica did a great job and maybe next time she will have more time to just "be" with all of us! We will have to host something for her!

Baseball tomorrow night. Snackbar duty on Thursday night. Pay the bills. Fight the insurance company. Fill out disability crap. Figure out the mountain of medical bills. Tax garbage. Car registration. So on....................life. Everyone has their own bag of crap. I just happen to be airing mine tonight!

Wow! What a downer blog tonight. Sorry for the tone. I just need to get all of this out so that I can work it all out at the gym tomorrow. I think I will kickbox and pretend that the bag is the insurance company. I would LOVE to rip the seam on the bag!

Keep writing letters and keep praying.
Pray for me. Pray that I can pull myself out of this funk tomorrow.
Pray that Gary continues to endure this daily discomfort so that he can receive more treatment Monday morning.
Pray that the kids are unaffected by my frown today. :) I better start smiling. I don't want to get wrinkles from frowning! :)
Pray that we rely on God to take us wherever we need to be with Gary's treatment. We need to be completely dependent on Him right now and not ourselves. We are not in control of our lives and can only do so much.

Love and Peacful Hearts to all!
Lisa

Cinco de Mayo

Hi everyone! We are having such a rager at our house tonight for Cinco de Mayo! Yeah, right! Boys are going to bed and we did not even have mexican food for dinner! I am ready to go to bed as well. I have still not recovered from this last weekend!

Nate and I went to the Disneyland Hotel with Steph and Josh and Jake and we had a great time! We were at Disneyland by 6:45 AM on Sunday and we stayed until 5 PM! We stayed in a suite at the Hotel and the boys were in Mickey heaven! We went out to dinner and the boys swam in the pirate pool. Such fun and such a treat!

Well, we went to Dr. Barth today. All is well. Here is the latest.
Gary's colonoscopy results came back unfavorably. He has loads of damage from the radiation and his bowels have not healed. The new molecular therapy has a nasty bowel side effect so Gary can't have this therapy until his bowels are healed! We have no idea how long that will take. If he were to do the molecular therpy on Gary now there is a possibility of blowing a hole in his bowels. It would be as awful as it sounds!

So, Monday we start another round of chemo! This means we will be at the doc office every day for hydration and counts and possible transfusions. We both can hardly wait!

SIDENOTE:
We wanted to thank everyone who wrote letters to our insurance company to try to get this therapy approved. The letters were so dear and so many people from our little league who don't even know us that well wrote these awesome letters on our behalf! We are so blessed. I know these letters will have an impact and I am confident that our insurance company will approve this therpay for Gary. Maybe the delay in his bowels healing is giving us the time needed to get all of our ducks in a row for this new treatment. We will wait and see.

Gary's parents are here and they are taking a little side trip tomorrow to see family in Central California.

Our Nanee just turned 88 and she is the most amazing woman! We all just love her so much and thank God she is so amazing. She is a true testament to the love of God and I hope I can be 1/2 the woman she has been all of her life!

School is almost out! Praise God!!! I am ready to ease up on the schedule a bit and just hang with the boys! Hopefully, this summer will be a little better than last summer.

If anyone is looking for something to read I would like to recommend The Shack. It is such a good book and it is a quick read. I read it while I am at the gym everyday and then re-read it to Gary so that he can stay caught up with me. I am enthralled with this book and it is hard for me to put down! Lori May knows what happens at the end! Don't tell me!!!!!

I am going to get in bed with Gary and I will force him to watch Dancing With The Stars and The Bachelor! Poor Gary.

Love to all and thank you again for your prayers and your letters. Feel free to keep writing them! We can use all the help we can get!

Love,
L