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!