Friday, November 7, 2008

Thursday NIGHT & FRIDAY MORNING

It’s Thursday night at 11:30 PM and I am laying on my “comfy cot” in Room 834 at Hoag with Gary. Gary looks pretty dang comfy now that he has had an arsenal of drugs and a belly full of Filet Mignon – thanks to Todd & Rob.

In the background I can hear IV pumps beeping and people milling around the hallways. We always have the TV on because it drowns out other noises that go on throughout the night hours.

I called Gary’s parents to find out how Gary’s Dad was feeling last night. My heart broke as I received the news that Gary’s Dad is in the hospital right now battling cancer as well. I have details but they are not totally confirmed by the docs so I will wait to give them to you. I will tell you that his cancer seems to have spread into his left hip (just like his son) and there is a great chance it could be the same type of cancer – bladder. We are steadfastly praying and waiting to hear from them and Gary is totally devastated. We have not told the kids this information either.

We have been quiet together tonight. We did discuss Gary dying a few times with our favorite nurses and some of the doctors. I thought I had pretty much cried all of the tears I had today but when I am talking about Gary I find myself fighting back even more tears.

It is strange. Sometimes I can talk about this subject without shedding a tear. Very logical. I can actually remove myself from it and talk about it like it was happening to someone else. I like those times because that is when I can make sound decisions.

Most of the time I can’t talk about it for too long because we start to talk about something so overwhelmingly emotional that I just end up breaking down and down and down. I can’t cry anymore tonight because of the state of my face. My eyelids look like hot dog buns and I forgot the Preparation H to shrink those bags! My head is killing me and Vicodin (my last resort) has not worked in a few days. Oh well.

I just got side tracked because Stacey and Heather came by our room and had to give Gary his goodnight kisses! I love his nurses – 98% of them. Some of them are much more special and have been so incredibly wonderful to both of us. Synara is caring for him tonight and she is super special, too. Larry comes by every day to visit and Rose is always around. She is an angel and we love her!

Back on track.

So, I am sitting here and I am going to best articulate to all of you what was told to us this morning. I am sure I will get some of the info wrong but will focus on telling you what really matters.

In a matter of only a few weeks Gary cancer has spread significantly. It has not grown in the liver or by the right pelvis. The only tumor growth is on the left side of the pelvis. The tumor has eaten away at more of the bone and it has also grown apparently into his neo bladder. There seems to be nothing that will stop this cancer. We thought the chemo was working and it is in all of the other areas with the exception of this crucial area.

The pain in his leg is getting worse and we now know why. The neurostimulator is not working and we now know why. So, faced with this new information we are trying to make some very serious decisions with regards to the path we will now take.

It is hard to switch gears. We have been on this playing field and our goal was to Gary’s cancer in a manageable state so that he could have quality of life for however long that was going to be.

Now, we have to change fields and we are playing an entirely new game. The playbook now dictates that the new goal is trying to figure out how to help Gary die. What does that look like? How far do we go with further treatment? What treatment do we do and what treatment do we not do? There are so many options – most of them are not viable options given the extreme complications of his cancer. This is new territory for me and it took me an entire evening to get myself up to speed and educated. All the decisions we make are so personal for both of us and they are decisions no one should have to make.

I am numb to be honest with you. I feel like I am living out another persons life. This is our life. We are facing horrific things. It sucks and it is more than awful. I wanted to throw up all day.

Many of you I know want to know how Gary is doing. Gary is doing. He has cried today and laughed today and he has had times when he can talk about things and when he can’t talk about things. I try to put myself in his shoes and I just can’t do it. We are two totally different people. I would be flipping out. Freaking out about the kids. About Gary. About everything! I don’t think Gary thinks like I do. Men and women are so different. Gary is fairly calm and he told me that he felt numb as well.

So, tomorrow Gary gets another unit of blood, we have a Hospice Consult at 8 AM and then we have a radiation consult and mapping session at 10:00 AM for the tumor in his left pelvis. The reason for doing radiation is to try to attain some sort of pain control. If this fails then we consider the possibility of severing the nerve going down the leg completely and he will lose the use of his leg. After these appointments Gary will be released and come home.

If we choose the Hospice Route then we will do the bare minimum things to make Gary comfy. We will radiate, operate on his ureters to re-route the urine away from the bladder to slow down the infection rate. These things will hopefully minimize the pain so that Gary can have some quality time at home with the boys and me.

We are not going to tell the boys right now. Gary has gained back almost all of his weight and he looks great! Amazingly great! We will tell the boys in a week or so when the timing is right.

It is a perfect time to have a party for Gary! He is really looking forward to it as am I. Please stop by if you can and just say hello.

How to pray. What do we ask the Lord for? I would like everyone to pray for peace and understanding for our family. I want to pray for light and love to be present always. I will continue to pray for a healing for Gary and believe that whatever God has planned will come to fruition. Pray for protection and sanity and no anxiety. Pray for guidance in the decision making process and pray for our hearts to be quiet.

Please pray for Gary’s Mom and Dad as they wait to find out what they are up against with the cancer. I know how terrible his parents feel that they can’t see their son right now.

I know this blog entry was long but I wanted to catch all of you up to speed.
We will be coming home around 4 PM today and we are very much looking forward to that.

All our Love,
Lisa

BTW – If you have digital photos of our family and of Gary I have a favor to ask of you. Would you please somehow get those photos to me ASAP? I will take a CD or you can put them on a site like Shutterfly and I will download them. ☺

Thursday, November 6, 2008

Loss For Words

Please give me some time to give you a thorough update as we have been inundated with calls and doctors and information. We love all of you and we can't wait to celebrate Gary's birthday with you as well.

Gary has been in the hospital since Tuesday. I can't believe I have to tell you this. Our eyes are swollen and heavy from crying all day as we found out that Gary's cancer is out of control and we basically have no viable options other than Hospice.
I want to explain everything to you but my mind is not clear and I want to wait until it is so that I can give you accurate information.

THE BOYS DO NOT KNOW so please do not tell your children. The boys are our 1st concern and we will tell them in our own time and I will let you know when we do so it will be safe to tell your children. We do not want them hearing this information from anyone but Gary and me.

Please pray for our family as we transition into this most difficult time. If we need anything believe me we will ask. I know everyone wants to get involved and help but we need some time to digest this and figure some things out. Like I said, we love you all and we appreciate your support an prayers and love.

All our love,
Lisa & Gary

Monday, November 3, 2008

November 3

Good Afternoon.

Remember to get out and vote tomorrow if you have not already done so. Gry and I voted via Absentee Ballot and it was a piece of cake! I think I will do that every election. The only bummer part is that you don't get the sticker. The boys love for me to wear my sticker after I vote but I did show them my ballot as I mailed it so they had proof that I voted!

Today was an okay day. We had some good news and some not-so-good news.

The good news seems to be that the liver tumor is looking better and Gary's liver values are normal. Everything is draining nicely and that's a good thing. Because things are going so well Gary will have another procedure under general anesthesia this Friday at South Coast Hospital. Dr. Arata will go into the liver and give Gary an internal stint of sorts so that we can remove the exterior billiary drain coming out of his bile ducts. We have been waiting to have this done and now is the time.
If Gary's counts hold strong then we can proceed. Gary had another round of chemo today (Velban/Methotrexate) and he is not feeling all that hot. I hope this will not affect his counts this week.

Well, we turned the pain stimulator on today and for the first 1/2 hour it worked. Then, just like before, Gary felt like the inside of his body was burning up. The burning pain was down the left leg and across the lower back. It was awful and ended up hurting him for over and hour after I turned the stimulator off. We had to give him 2 IV pushes of Dilaudid to calm the pain down.

So we made some phone calls today and are waiting to hear back from the Rep to schedule a reprogramming. If the reprogramming is unsuccessful then the next step might be to go back in once again and reposition the stimulator. Remember that Gary still has 23 staples in his hip/back and those will be removed on Thursday from the procedure 10 days ago. That was news Gary did not want to hear at all.

I am hydrating Gary right now and he is resting. He looks relaxed but when I ask him what his pain level is he tells me a 6.5. I hate that he is in constant pain. I would love for him to have a good day if just for one day. He deserves it and it saddens me that he has not had that yet.

Back to the homework grind and the lunchmaking yuck and laying clothes out and doing tons of laundry. I am excited that we all have a 4-day weekend again. The kids only have 13 days of school in the month of November! L:ove that!

I am going to get more meds for Gary and then home to fix some yummy chicken casserole. I hope Gary will eat tonight. He managed to eat a glazed old fashion donut this morning and a Big Mac this afternoon. I even found a Snickers wrapper next to his bed so I guess I can't complain! He's eating and that is a HUGE accomplishment on his part.

Have a great night.

Love,
Lisa

Sunday, November 2, 2008

Mourning for our friends

Good Evening.
When Gary was in the hospital this past summer for the majority of the summer I ended up meeting 2 women while on the 8th floor. Both Dixie and Sue had sick husbands who were battling cancer. Both Dixie and Sue's husbands had been in the hospital more than they had been out over the past year. Wonderful women. Warm and friendly and strong and courageous. We bonded immediately as we all shared one thing in common - our sick husbands. We talked for hours and hours and at that time I really realized I was not alone and all the things Gary and I had been going through they had been going through as well.

Well, a few weeks ago I learned that Dixie's husband had lost his battle with his cancer. She knew this was coming as she had taken him home and began Hospice. I just saw Sue and few weeks ago and found out the Larry's Cancer (ALM - Leukemia) was suddenly in remission and she was so happy. Well, this did not last long at all and as suddenly as the cancer disappeared it reappeared and this morning Larry died at home.

I also found out this week that Jeff Spears died. He was the young teacher from San Clemente High School whose wife, Ruthe is in remission from Breast cancer and they have two 5 year-old twin girls and a 9 year -old boy.

Cancer sucks. Plain and Simple. It is a roller Coaster of emotions. It is hard for me to write sometimes because on any given day we can have a good day and then BAM an awful day. Then, people say but I thought he was feeling so good? What happened? It's cancer. It is awful. It is a psychotic uncontrollable day to day emotional horror show. It is so hard to articulate to all of you everything that we go through mostly because it can be so incredibly overwhelming.

Thanks for hanging in there with us and for going on the coaster with us. I wish we had more good days than bad days and maybe that is what our future will hold. We hope and pray.

Please pray for Dixie and Sue and Ruthe and their kids and families. It is hard enough watching your loved one suffer so greatly but then watching them die is so unfathomable to me at this point. They are all such incredibly strong women and my heart is close to theirs and aches with them.

Gary has been in incredible pain today in his left leg. I came home this afternoon to give him some Toradol and some Xanax. The Xanax ended up knocking him out from about 2 PM until 7 PM tonight. At least he was relaxed and calm and out of pain as he slept. I hate having to do that but at this point until we figure out how to work this stimulator it is much better for him to be out of pain and sleeping then to be in pain and writhing.

We have chemo tomorrow and then several other appointments that are scattered throughout the week. Thank God mo Mom is here. She is so great with the boys and with Gary and the kids LOVE hanging out with her.

I am off to bed. I will work on the web later. I am glad you all liked the new photos. I am really looking forward to next Sunday and celebrating Gary's Birthday!

Another one of our kids is grounded for the week and it isn't "Mason". Story to follow tomorrow........stay tuned...........it's fairly entertaining!

Love To All,
Lisa

Saturday, November 1, 2008

GARY'S BIRTHDAY INFORMATION

Hi everyone! WOW - 3 posts today. I have truly outdone myself this time.

I am not good at creating online invites but I think I managed to do it this time.

We will be having Gary's Birthday Celebration SUNDAY, NOVEMBER 9th from 2:30 to 4:30 PM at our home.
Please cut & paste the link below for details.

http://www.evite.com/pages/invite/viewInvite.jsp?event=NRCGKWRIDKPPRTOHEGYW&inviteId=LPYYAGIVVKXIZCERNHMG&showPreview=false&x=97994078

I do not have all of your E-mail information and therefore could not get everyone included on the Evite nor was I talented enough to create a URL (I think that is what it is) so back off my cut & paste link! :)

All of our friends and family who have been so extremely supportive - please stop by if only for 5 minutes to say HEY to Gary and to help us bring some Birthday Cheer his way!

I will have some munchies and water on hand and of course a football game will be playing!

I have never had a party for Gary and I think he will be pretty stoked to celebrate with our friends and family!

Happy Sunday and REMEMBER TO TURN YOUR CLOCKS BACK 1 HOUR!

Love,
Lisa

CODENAME MASON

When I tell you that one of our children is a firecracker I really mean it. He is such a pistol and this week has been a week for him to learn some hard lessons. Let's start out with some positive reinforcement for all of the boys.

The boys all had great reports from their teachers during the conferences. None of them had anything negative to say. All of our boys are very bright and outgoing and fun and good friends and happy and on and on. How happy that makes both Gary and me especially with everything they have been through and continue to go through.

So, back to our firecracker. I really want to tell you which one of our kids I am talking about but I can't. I will let you all guess and try to figure it out and we will refer to him as "Mason" to protect his identity.

Where do I start. Let's start with something super funny and then we will go from there.

I was in the bathtub tonight and Mason told me that he needed to come in and go to the bathroom. So, with the curtains drawn I listened to Mason as he lifted the toilet seat and exclaimed, "A Mans gotta do what a mans gotta do." I swear I have no idea where he learns this stuff. We have never heard the other boys say that.

Now we will discuss the not-so-funny stuff. Remember when I told you about one of our kids giving the bird? Well, Mason said a nice four-letter word and I can tell you that it was not BIRD! He was holding his tongue and repeatedly saying "firetruck" and when you do that it does not sound like TRUCK. BTW - he was not alone in his room doing this. He had a captive audience!

Oh, and there's more. Mason was playing at the *#&$^'s house today and he jokingly told one of the 12 year-old neighbor girls something EXTREMELY INNAPROPRIATE about her chest area. VERY VERY VERY INNAPROPRIATE!!!!!#^$%#&@*!(#&^$*^$*^%$* What the heck? The only thing I can think of is that one of our other boys made reference to something regarding the chest area (was not inappropriate) and Mason took that and ran with it and put it into a whole new and thrilling context!! I am sure he got a huge laugh at the time and laughed until he saw me and faced my wrath!

For those of you who do not know our Mason really well he most definitely has a funny and wonderful sense of humor. He loves to make people laugh and evidently we need to help him to understand what is appropriate and what is not - as far as trying to be a comic! Both Gary and I have zero tolerence for that type of behavior. Mason is so busted and he sat in his room tonight and wrote letters to all of the involved parties apologizing for the inappropriateness of his behavior.

Poor kid. It does stink being a kid sometimes and wanting everyone to like you and trying to fit in and make kids laugh and all the other akward things kids do for attention. He has a whole lot to learn and I guess I am glad we are going through this now and not later in life or at school with some random kid! This is why we are parents. It is up to us to reinforce positive behavior and to make certain that our kids understand the difference between right and wrong behavior. There are always consequences for our behavior - good or bad - and those are some of the toughest lessons we learn and probably still learn as adults - experiencing the bad consequences. I hate it when our kids are in trouble. It is so much nicer when they do everything right and life is smooth dangit!

Mason told me this weekend that one of the kids at school is bullying him and calling him names. He had problems with this same kid last year in Mrs. $&*#(@'s class and I will be visiting the school all week to monitor things and to see what is really going on. Kids can be mean and we want to help our kids learn how to deal with meanies and not to swallow their self respect and take crap from other kids - in the nicest of ways of course!

Gary went to Home Depot today with Chuck and got all the things to fix our 3 toilets. He actually got out of the car and wheeled himself around the store with Chuck's help. He was so whipped when he returned home but it was good for him to go on an outing!

I am going to post the link for the Birthday Party for Gary. When I figure it out I will blog it.

Happy Parenting To All,

L

November 1


Good Morning and aren't you all impressed that I have added some new photos! Self Taught might I add!
The site will be under construction this weekend as I try and tweak it some more.
Halloween was great last night and the kids brought home so much candy. I will be taking the vast majority of the candy to the Cancer Center so that they can hand it out to the patients. Most patients receiving chemo like something a little sweet!
Be patient as I change things around!
Love,
Lisa