Thanks SIL Jen!

So we got some great news yesterday! Scott's sister Jennifer is headed out to "cover" for me while I go to San Fran to attend my brother's engagement party! This is such a win win for everyone. Jen can spend some alone time with the kids, Scott can get the help he needs with them and I can go and spend time with my 2 brothers and 2 sisters along with my mom and dad. Having us all together in one state rarely happens so it's kinda a big deal. And now we are welcoming Janine and her family into the mix - I couldn't miss it!

So that weight has been lifted - Thanks Jen!

Just goes to show you...

So today, it hit me kinda hard on my way home from bootcamp. I was working out and just saying to one of my co-work-outers how its frustrating how I don't seem to have a lot of stamina while working out after all this time. She said - you have a sick husband, 2 small kids, a house, and work full time - how can you possibly have excess energy. She's right but I never thought about it like that.

On the way home I was thinking..man what a difference a year makes. Last year - we were just enjoying our lives, no "real" worries. Now, look at us: Cancer. Just goes to show you, you never know what your life will bring. It's daunting to think about at times.

Tonite we are heading to our friends the Frescholtz's for the 2nd annual new year's eve celebration. Should be fun, but Scott needs to get in a nap in order to make it to midnight. I am looking forward to spending time with good friends tonite. We need to get into next year on a good note.

Here's to a great 2009! Happy New Year Everyone!

Ramblings...

Scotty is still pretty tired and fatigued. He is working the next few days but is basically in bed right after dinner. He gets up so early now..sometimes as early as 3a.

As for me, I am working out a lot. I am up to 5x a week. It's a great stress reliever for me and I feel good doing it. Overall, as a family, I think we are doing great. Staying focused on the end goal of health!

Birthday weekend.

We had a great time celebrating Scotty's birthday. His Aunt/Unc and cousins came down for the afternoon and we went to lunch and then hung out and had some pie. Then we were settling in for the night and we got a surprise phone call from some friends of ours asking if they could come over. It was so out of the norm, that we said SURE! They came over with champagne and wine in hand and we toasted his bday then decided to head over to Clydes since my mom is in town. We had the best time just laughing and talking. Even though Scott was worn out, it was so worth it for everyone!

Saturday, Scott had to rest a lot to make up for the night before. Later on, Scott and I decided to go see a movie and dinner. Scott really didn't feel so well right after dinner and there were moments when I thought we may not make it through the movie but he was a trooper and then we hurried home so he could rest.

Today was a mixed bag. The weather was in the 70s if you can believe it! He was stir crazy so we went out for a bit to do errands and then he spent a lot of time in bed resting. His stomach has been upsetting him and he is just generally worn out. I can definitely tell that the chemo is having more of an effect on him as time goes on. One new side effect I noticed this week - he seems to have dark marks all over his back. I wrote to Dr M and he said it could be from the chemo and he wants to look at it during our next visit.

I can tell he is getting frustrated with feeling so bad all the time. He told me it's even more frustrating to know if he didn't get this chemo, he would be feeling fine right now. I am sure it's also knowing that even having chemo is no guarantee the cancer won't come back. I prefer to focus on the positive stats that I have seen and knowing that colon cancer is one of the most researched and successful recovery cancers. I don't think I can handle thinking about the other side of it to be honest.

Birthday Boy

HAPPY BIRTHDAY SCOTTY!

Chemo Round 7

I went to chemo with Scott on Tuesday. The nurses there are so wonderful. Smob and Steph Oura stopped by. It was in a strange way fun. Scott did get sick even before we left the hospital. They gave him some meds and I drove home. He was in bed pretty much as soon as we got home and has been very tired. Seems as long as he takes the anti-nausea meds - the nausea is under control as much as it can be. His hair seems to be thinning a little. The dr said that happens with this chemo. His hands are also sore and his face is a bit flushed. His bp is a little high too. They are watching that.

His spirits are pretty good. His patience is still thin and he has some anxiety but for what he is going through, I think he's doing great! He's been working and we are in general just continuing with our life. I think the kids are getting used to being a little careful and more aware when they are around their Daddy.

Sunday

I don't know if it's me imagining things but Scott seems worse this time around. He is a lot more fatigued and told me this morning he feels more nausea than normal. Our friends' were in town this week and I know Scott wanted to spend time with them so maybe he just pushed himself too much.

His patience is so thin with the kids too. I tell him he goes 0-60 in terms of temper so fast with them. He is so cold too. Winter is going to be tough.

Chemo 6

Scott has now lost over 30lbs. The Dr didn't seem overly concerned with that. He also said most if not all the "odd" things going on with Scott are related to the chemo. He has been having some pain in his hands and swelling. He was told he is responding very well to chemo overall and no change in his meds is needed.

When he got home, he basically had some soup and went right to bed. Jon Hauer spent the day with him and they played poker. I am sure nurse Mercedes loved all the laughter coming from that room.

Scott's spirits are high. He came back from having a great time in Vegas and ready to conquer the week.

Not enough hours in a day

Scott went with his friend Jon from Arizona to chemo today. I am home with Hannah who has strep once again. They gave her a stronger antibiotic this time and of course to make matters harder, she hates the flavoring so its like a battle to get her to take it. She is a trooper but boy does she whine and complain about it and takes forever to take it. Her strep symptoms are a bit odd. She doesnt get a sore throat or fever. The only signs are she says her stomach hurts and her coloring is off. I took her in last night to the dr, and at first the dr doubted it was strep. Sure enough, the test came back positive. I know Hannah so well, I can tell when something is not right with her.

We haven't really even started holiday shopping yet. It's hard when Scott doesn't feel great and I have to take the kids everywhere. I guess I should have taken advantage of my friend Ellen's generosity when she took the kids all day Sunday -- but there is not enough time in a day.. I spent that day cleaning and de-cluttering the house. Always too much to do it seems.

Cancer, Cancer Everywhere...

Just a random thought about Cancer. It really knows no boundaries, doesn't care about your social status, your net worth, how nice you are, how pretty or beautiful you appear, how much luck you have had. It is a great equalizer. Famous people, not famous people - everyone has been touched by it.

And He's Off...

So Scott decided to go to Vegas and meet up with his AZ friend Jon H. Both the Dr and I thought it was a great idea. Get out of your comfort zone and have some fun with a good friend he hasn't seen in a while. He was so apprehensive about it though. One thing that you don't get used is the personality shift that happens with cancer.

The PC (pre-cancer) Scott would have not even hesitated to go -- he would be gone faster than I could say gone. This new Scott, hemmed and hawed about it. Don't get me wrong, I understand the concerns -- what if he starts to feel like crap, what if he is too tired to do anything, what if something happens, what if... -- This is the good weekend so I think he will be fine. He goes in for another chemo session on Tuesday. Sometimes you just need a break. We have been dealing with this since July with no "break" -- a lot of stress and worry.

I am going to try to go to my brother, David's, engagement party in January out in SF. I have to coordinate with my friends though to ensure that Scott has some help and support while I am gone which will be the one logistical thing I will have to deal with pre trip. It's important that i go. All the Gettinger kids will be there. They were all together for Thanksgiving minus me, so I think this time I will complete the Get-net.

This weekend we have so much planned. Hannah and Maya have a bday party at Tysons's corner and Nate is heading over to Jacob's house during that. On Sunday, the kids have Hebrew school, then Nate is headed over to Ryan's house for fun and then a party. So the plan for the weekend is to keep them busy!

Post Thanksgiving...

Scott made it through Thanksgiving day ok. He stayed for dinner at my friend's house but left before dessert. He really wasn't feeling well and to top it off, Nate was sick too. So, Hannah and I stayed later and when we got home around 830, both boys were sleeping in my bed!

He has had some nausea and just overall fatigue - par for the course really.

Chemo 5

Scott's chemo went fairly well. His bp seems to be ok for now and the dr said he is handling chemo very well. Usually they need to adjust the dose by now, but do not need to for him. He did lose a few lbs from 2 weeks ago.

His friends Hale and Ryan joined him for the day and they played Risk. I guess Hale whooped everyone.

Scott got home around 6ish and ate a bit and then went straight to bed. He seemed to be in good spirits this morning and took Hannah to school. He is having some nausea but if he takes the meds, it seems ok.

Small Successes

This weekend I was able to clean up the garage enough to get Scott's car in! Yay! I felt very accomplished. The kids have been sick on and off this weekend. Hannah is still recovering from Strep and Nate just seems off. Throwing tantrums, testing us about every thing constantly. It's been a real challenge to not yell at him every hour of every day.

Scott seemed to have a pretty good weekend. He was tired but didn't really have any stomach issues this weekend. He goes in tomorrow for his chemo and his friends Ryan, Div, Digi and Hale are all planning on hanging with him. I feel sorry for the nurse, Mercedes - that's quite a crew to handle.

I took the kids to the library for a bit today just to get them out of Scott's hair so he could rest. He seems to be addicted to some computer game - I have no idea which one. We did manage to go out for breakfast alone this morning while the kids were at Sunday school.

I think we are all looking forward to the long holiday weekend...

Weekend plans...

Scott's next chemo appt is actually next Monday. I was mistaken on the timing because of Thanksgiving.

His nausea seems to be somewhat under control with the addition of the new med - under control but still there. He is very fatigued and gets worn out easily. His sensitivity to cold is pretty bad now from his hands, mouth and feet. He basically doesnt go into the freezer at all now. It's like a broken record now - I guess its good that we know what to expect now.

The kids have all been fighting a bug of some sort. It seems to be a lingering thing where nothing specific is wrong, but they just don't seem right. Nate actually put himself in a nap on Sunday - I seriously think that is the first time that has happened EVER! Then he went to bed at like 7p. It was so odd.

I did get a babysitter to come over Sat afternoon and Scott and I went to see the new Bond movie. It was nice to get out without the kids a bit.

Chemo Round 4

Scott went to chemo today alone. I came down with a bug that kept me in bed most of today and took my voice. His appointment time for the doctor was 9a and was kept on time. Dr M said that they need to start watching is blood pressure because its high again - a side effect from the Avastin - and if it continues to be high, they need to put him on bp meds. He got a new anti-nausea medicine to try and they said he can expect to get more and more tired with each treatment.

He didn't get his chemo treatment until around noon today, so he didn't get home until around 530p. Long day. My friend - Smob - was able to stop by and bring him some lunch and hang out for a bit to keep him company. I really appreciated that and I am sure Scott did too.

When Scott came home, he already looked green and ate a small meal and went to bed. I just have a feeling this chemo session will not be so good to him. It's very hard to see him hurting.

I have been trying to plan some kid outings to just get them out of the house while he recovers. Tomorrow, Annette and I are going out for a bit for dinner. Scott tends to not have a lot of patience with the kids and heck, who can blame him. I am not going through chemo and I don't have a lot of patience with the kids either .

Scott said our next appointment is in 4 weeks because of Thanksgiving. I will keep everyone posted.

The weekend ends.

Scott's "feeling well" timeframe came a bit late. It actually came today - Sunday. So that's not really good news. My brother left early today and I arranged for Ellen to take the kids for a few hours so we could take advantage of him feeling good. As I mentioned before, we have to get his car in the garage before it gets really cold out. So we moved from furniture out from the garage upstairs and Scott was able to put it together. We are in the midst of "fall cleaning", much to kids' dismay since we are making them help.

We have chemo again on Tues. 9a we meet with Dr Marshall and then do the rounds.

Juggling...

Scott came home today not feeling well. He was having stomach issues. I have been so proud of him - he goes to work every non chemo day and plugs away. I know that him going home means he really wasn't doing so well. He did do some conference calls from home, so even though he was home he worked. The Dr said to continue juggling all of our balls, so that's what he's doing. I am sure some days its hard, but I also think if you have a goal and a purpose every day, it makes everything easier.

Same Old Routine

The chemo rounds are getting predictable now. He goes in on Tues, feels like crap through approximately Tues of the following week, has some stomach issues on the Tues, then starts to feel better on Weds and then back to normal come the weekend --then we start all over again.

His neuro issues are pretty prevalent throughout now. Hannah has learned to make her own frozen breakfasts and I heat up certain foods that come right out of the fridge. Scott has learned to drink sweet tea with no ice and is not able to eat ice cream or smoothies. Anything cold really. We are going to work this weekend on getting one side of the garage empty so he can start putting his car in there now that it's getting cold outside. I think that's going to become a bigger issue as winter descends upon us.

Scott met with someone recently that just got done with chemo. He had stage 4b Hodgkin's disease, married with young kids. A few of Scott's friends thought it would be helpful to get them together to talk about their experiences. I was very proud of Scott - kind of out of character for him to go and meet with a stranger to talk. I think it was really helpful to share their stories. Even though their cancer's were different, they both are or have been through the same things.

Me, you ask, how am I doing?!! ...Well this is like a rollercoaster. One day I feel hopeful and happy, the next, it hits me - Man, we are in this for the long haul. I am focusing a lot of my energy on my health. I have been working out hard with the bootcamp and the trainer -5x a week. It has been helping me de-stress. The kids always keep me busy. Hannah started brownies this week. Nate - well he's Nate and is in a constant state of movement. As Dr Marshall said, we are trying to juggle the balls we have as best as we can.

Chemo Round 3 Day 2

Scott was home today. He seems to be somewhat nauseous and fatigued. The days following chemo are always the hardest it seems... He goes back tomorrow for the removal of the chemo pack and then we have 11 more FOLFOX treatments and then its just Avastin treatments for 6 more months.

Chemo Round 3

We spent the entire day at GT hospital today. We left our house at 830a, dropped Nate off at school, then went to the hospital for a 1030a appointment with Dr Marshall. The 1030a appt happened at 1240p. We were not too happy as you can imagine. It was a madhouse at the Lombardi Cancer Center today.

Dr Marshall and some med students went over Scott's symptoms. He has been having nose bleeds and his bp is a bit elevated. Dr M said these are all signs that the Avastin is working. They arent too concerned about them yet, but will keep an eye on them. His neuropathy is worse and Dr M said that if it becomes unbearable they will adjust the dose, but for now, its full steam ahead. Our last day for the Folfox chemo is Mar 3. The Avastin goes for the full 12 months. Scott's weight has remained the same and he is sleeping ok with the aids they gave last time. He was a bit more nauseuatious this time than last but its all par for the course.

Dr M did talk to us about moods and juggling all the balls that we already had in the air and now adding in cancer/chemo and how hard it is. It's very normal for us to feel like we are on a rollercoaster and all we want to do is get off. He said its not abnormal for everyone to get depressed and just exhaust themselves trying to learn to juggle the extra balls. He said he thinks we should continue to try our best and if one can drop, then let it. I think we have been doing that the best we can.

Dr Marshall said that we need to try to get in earlier and to insist on earlier appointments next time even if it means we have to make a fuss. I'm on that already!

We then headed up to 7West to start chemo. Mercedes took blood, then we had to wait for those results, then wait for the chemo to be mixed. My friend Smob stopped by and we went and picked up a pizza for all of us to share. Scott's chemo started around 2ish. We got home around 7p tonite. It's been a long day.

Ellen picked up the kids from school, and fed them dinner. Thanks.. that helped us out a lot today. Scott already doesn't feel so hot - so this will be a long week for us.

A-ok

Everything here is fine. I just haven't felt like writing...

Post Chemo 2

Scotty is very tired and his sensitivity to cold seems to be more pronounced this go around. He usually gets the kids breakfast in the morning (frozen waffles or something like that). He had to ask me to return it to the freezer for him because it felt like a jolt of pins and needles to him.

He was a bit nauseous yesterday and fatigued. So he took it easy and slept on and off doing and did some work from home.

He feels good enough to go get his chemo meds removed by himself today. I told him to let me know if he feels he wants someone to go with him but he seems set on going alone.

Update: Scott had no problem going to GT to get his meds removed. He is very tired though and went to bed at 7p last nite. He's very very tired this time.

Chemo 2 - Check

We left the house at around 7a-ish. Dropped the kids off with Annette for breakfast and unloading at their daily locations, then went on our 1hr 20 min commute down 66 to Georgetown Hospital. We arrived and went to the Lombardi Cancer Center and then waited for a bit to see Dr Marshall. First, they took Scott's stats, then we met face to face with our trial coordinator, Karen, and then Dr Tran evaluated Scott's current condition. We talked about how he is feeling - emotionally and physically. They gave him some meds to help with his sleeping or lack thereof.

Dr Marshall came in with Dr Tran and Karen next. Dr Marshall really has a great bedside manner. Sets everyone at ease. Dr Tran wanted to give Scott some Ambien but Dr Marshall felt Ativan would help more so they actually gave him both for sleeping since Ativan also helps with nausea. We also talked about the genetic results. Scott had one marker found in his mass, the one that causes the cells to not stick together. I can't remember the name of it. Dr Marshall said it just happens and they don't know why it doesnt function right with Scott. The kids should get checked a bit earlier than others due to this however. He did say Scott's prognosis is still very good and we can expect the same side effects from chemo 2nd session as the first. He did not feel that his dosage needed any adjusting.

We then went up to 7 West - the infusion floor. Mercedes our nurse set us up in Room 18 and then we waited. She took some blood and then we waited some more. First in, first ready for chemo cocktails. They gave Scott some zofran for nausea and then started on the Ativan first. Then they do the 2 hour Folfox regime. My friend, Steve Mobley (aka Smob), does some lab work at GT, so he came to visit us and then we went out for lunch for a bit on the campus. It was a gorgeous day. Smob & I came back up and spent more time with Scott. Smob and Scott talked "techy geeky stuff" most of the time. We finished up there around 4ish and headed back to Ashburn. We dropped of the new scripts at Target and then went home. You could tell that Scott was starting to not feel so great when we were at Target - his color was greenish and pale.

Ellen B. offered to pick up the kids from AOL. She brought them back to her house for fun and dinner. Once Scott was settled and the kids were worn out, I headed out to pick them up. I don't know what I would do without my friends. We are so lucky to have them in our lives. Both Nate and Hannah know about Scott being attached to his chemo bag for a few days and are extra gentle around him. I can hear all 3 of them playing legos together right now.

Scott goes back around 130p on Thurs for the chemo removal and port flush and we start all over again 2 weeks from today. We are both pretty worn out. I feel guilty being so worn out after today. I am not the one getting chemo, but the emotions I have during this weigh heavy on me. I am tired. There I said it - tired. It's a constant flux of making sure things are taken care of, logistics worked out, bills paid, schlepping, errands, exercising - how can I not be tired?

Scott wore his :C shirt today during chemo and someone in the elevator said, "that's the right attitude to have" and smiled. We have no choice but to get through this with jokes, humor and a positive attitude. Both Scott and I are not wired to do it any other way.

Getting through the week

Scotty has actually been feeling pretty decent the end of last week through today. We go back for another chemo session tomorrow and then return on Thurs. I think he's very apprehensive about it because he is starting to feel better. You can totally tell -- his mood has just lifted.

My brother, David, came to visit this weekend and although we had plenty of resting time, we did go out and do stuff and Scott really didn't feel super fatigued. My friend Holly invited us to go to the National Zoo on Saturday morning. The weather was amazing and the kids had a great time. It was nice, and felt normal. From what I hear, tha'ts how this goes -- you are tired and not feeling well until the end of the 2 weeks, when you start to feel better, then you go in and do it again. His appetite still isn't what it used to be.

We go in tomorrow and first see Dr Marshall for a medical evaluation, then go up to 7 West - the infusion floor - and do a 3 hour course of chemo - and then he goes home with the 46 hour chemo pack. We will be dropping the kids off at Auntie Nettie's house at 7, since we have to be in Georgetown by 830a. Ahh, the joys of logistics.

Weekend fun

So our weekend came and went. Scott is very tired and he was sick on Saturday evening. Not sure if it was chemo related or not but it sure knocked the wind out of him. I think for him it's hard to think of himself as "sick", so he is constantly surprised that he doesn't feel well. He was not even well enough to have a piece of pumpkin pie on Saturday and for those that know him well, that is shocking!

I find it so interesting, that he knows intellectually he is undergoing treatment with chemo, but the person he knows is someone not limited and able to "live" the way we always live, so it must take some time for his current self to catch up with his old self. Does that make sense?

I emailed Dr Marshall to find out if our family should get flu shots. I am not sure since they are live viruses if that is something we should expose him to. Also he told that we have to make sure our dentist is familiar with treating someone undergoing chemo. I guess because of the blood and bacteria entering into your blood stream. All these little things you have to account for!

The kids are being so good lately. Making sure to wash their hands real well and just overall realizing that "Daddy has to rest" more than normal.

We have our 2nd chemo appointment scheduled for next Tuesday. We will meet with Dr Marshall prior to the infusion to get checked out. I hope this week proves to be the "feeling better" part of the cycle.

Dr Marshall answers email

One thing that has been a great surprise - Dr Marshall actually answers email. I have had a few questions the last few days and he has answered me right back. Now that is what I am talking about - a Dr that actually is available for random questions.

Scott is tired. He keeps taking his temp because he thinks he's sick. What he isn't computing is he had chemo pumped into him and he will probably feel "not right" without having a fever or a specific illness for some time.

He has been at work all week and most days he has stayed until 5. I know he wants to be there, but I do worry that he is pushing himself. I am sure he knows when he has reached his limits, but still. He seems to be having a cold coming on, so Dr Marshall said he can take OTC cold meds if he needs to. He did not take the Zofran today and says he has had no more nausea. So that's a great sign! He does look a bit flushed to me and Dr Marshall didn't seem very concerned about that.

Post Chemo 1

Everyone wants to know how Scott is feeling now that he is post chemo 1. He describes it like this: "I feel like I have the flu, but have no symptoms of it". I take that to mean he is wiped out and achey, but no fever or chills. He hasn't had a lot of nausea but has been taking the Zofran so it could be because of that. I have noticed his appetite isn't like it once was but he is eating. He still gets up a few times a night to go to the bathroom - but it doesn't seem as frequent as it once was.

Interesting things the nurse told us: He should peel the apple skins before eating apples, not eat grapes or other fruits and vegetables that have lots of crevices or can't be peeled. All veges need to be very well cooked.

He comes home from work and basically rests either on the couch or goes to bed. I am glad to see he is taking it easy whether it is by choice or not. Hannah has been very sweet, she asks him every day how he is feeling. Also, this morning, she wrote me a note to tell me to have a good day and that she loves me, and gave it to Scott to give to me, and then turned around and said "That goes for you too Daddy".

Chemo 1 - Check

We needed to get to GT hospital around 1p today which would be 46 hours from the time the meds were administered and the alarm from his man purse would be going off. Hannah and Nate had Sunday school and then I dropped Hannah off with Annette and then drove over to Ellen's so that Nate could have a fun filled day with his friend Ryan.

Scott has been very weak, tired and just overall wiped out. He has had some nausea as well. So we drove there - no traffic and had to go into the bone marrow wing. The Lombardi Cancer Center is closed on the weekends. We waited there around 25 mins and someone came in to take his vitals. His bp is good and he did not have a temperature. He is still sore from the medi port surgery. Then nurse Kelly came in and donned her chemo suit (which I am assuming is to protect her from getting chemo on her body). Comforting that they are putting this in Scott's body.

Nurse Kelly removed the meds, and the port - flushed the port with saline and heparin and we went on our merry way. Scott had some soup when we got home and went upstairs to bed.
I hate to keep saying this... but man I am wiped out. Mentally and physically just tired. Just think it's only the beginning of this. I took the kids to sunday school, schlepped them around to their playdates, did probably 4 loads of laundry, went grocery shopping, took Scott to GT, mowed the lawn, did more laundry, picked up Hannah, cleaned the kitchen, made the beds in the house... All this just on Sunday before 6p! Later, I am making dinner, getting the kids bathed, picking out Hannah's clothes for school tomorrow, getting her papers and school stuff in order all before I get myself ready for my day tomorrow.

Chemo'ing

We arrived at Georgetown Hospital around 830a. We went to the 7th floor West, the infusion floor. The nurse took us to room 12. Private room - with a bed, lounge chair, bathroom, tv and Wifi!

Our nurse, Mercedes, was not there yet, but they took Scott's temp and bp and weighed him. Mercedes arrived and explained that we have to wait until the pharmacy mixes our chemo for us to begin. They started off taking some blood from his port. Scott said it wasn't so bad to do that - no real pain. All chemo is mixed right before it is administered so it's first come, first done. Then a nurse practitioner came in to review some stuff with us. Dr Marshall was out of town, so she was reviewing it for him. Then they started with the Avastin for 30 mins. Then 2.5 hours with 2 of the 3 drugs of Folfox. The 3rd one is put in his port and he is given a bag with his meds to carry around. We are calling this his "man purse". You may see him walking around with it since he has to wear it for approx 48 hours. We go back on Sunday around 130p for the removal of the tubes and then they will need to flush the port with heparin and saline so it won't get clogged.

They have a lounge area on the floor with snacks and drinks. All the nurses are so nice and friendly. It is scary. Lots of people there that are very very sick. Scott and I brought our laptops and he gamed, and I worked.

He may feel nausea and have some anxiety. They have given him scripts for both. This evening he was tired and started to feel tingling in his fingers. Also he may feel sensitivity to cold and he said he noticed a difference already. Mercedes explained that as the time goes by the effects will increase.

We left Georgetown around 3p. I am sure moving forward that the chemo time won't be as long. We will have to see the dr right before chemo each time for an evaluation and Mercedes said that she will always be our nurse. She is one of the managers there and you can tell she knows what she is doing. It is very comforting to know that we are dealing with smart, experienced medical professionals.

I'm tired and worn out and sort of numb. Seeing them give Scott these chemicals today was hard. It is still so surreal to me but then it smacks you in the face when you are actually there seeing it happen. Hard to believe that this journey just started in July, seems so new but yet seems like its been going on for a while too.

Hannah seems to be taking this a bit hard. Seeing Scott so stiff -Scotty is very sore still from the medi-port - and with this man purse scared her. She ran to me and cried about how scared she is about Daddy being hurt. She is so sweet. Both Scott and I talked to her and explained that this is so Daddy doesn't get sick again and that he is fine. You can kiss him and hug him like always. I also said she is allowed to be scared and she can talk to either or both of us anytime about her feelings about this. That was hard too.

And we are off...

Today was ok. The port surgery lasted about 1 hour - 3 hours start to finish. Scott is very sore and stiff. They put it parallel to his heart on the right side. Its a bit swollen but overall it wasn't that bad in the context of everything else.

Tomorrow, we have to be in Georgetown around 830a. Annette is going to have Hannah at 7a and then put her on the bus with Maya. My Dad is here from Arizona for a few days, and he will prep Nate and get him to daycare in the morning. They said that the chemo session will take approx 6 hours starting with a short physical. Then he goes home with a 48 hour time released chemo pack and then has to go back on Sunday to get it removed.

I am nervous of course. We both have NO idea what to expect here. It's scary.

And so it begins...

Scott goes in for his port surgery tomorrow morning at Reston Hospital. On Friday he begins chemo. The chemo will take approximately 6 hours and then he goes home with a time released 48 hour pack. He has to return on Sunday to get the pack removed and the port flushed out I believe.

We are waiting for the regular schedule for his chemo at Georgetown.

Scott was randomized into the group that does FOLFOX for 6 months and Avastin for another 6 months. Even though it means more time in chemo, that was the better group to be in. We were told that the 6month supply of Avastin costs upwards of $100K - the cost is being picked up by the trial.

My dad is coming for a visit tonite from Arizona for the rest of the week, so hopefully Scott will be up for a visitor. The kids are really looking forward to spending time with their "grampa".

Not the great news we were hoping for...

Karen from the Lombardi Cancer Center called around 730a this morning. Not the good news we were hoping for. Scott's tumor did have the genetic markers so he will be starting chemo. He is scheduled for a port tomorrow and starts chemo on Friday. It kind of feels like someone kicked us in the stomach. I guess I had my heart and mind set on no chemo and we could begin to get back to things running normally.

We will get through this I know, but it's still a shock to hear. I told Scott he was high maintenance.

Still Waiting..

We probably won't hear back from the dr today. They called and said probably tomorrow. If Scott does have the markers, he will start chemo like right away. When I say right away, like the next day. They only have a certain amount of time to have him start, so no time to waste.

Here is a summary of the study Scott is in.

On a side note, not sure if I mentioned this before, Scotty has lost over 20lbs since July. Not the ideal way to lose weight....

Passing the time

I spoke to Dr Felice yesterday who told me to let's wait and see what the mass testing comes back with and then we can talk about decisions. He said that the "no chemo" route is part of the overall clinical trial and he has not heard that it is standard practice. Dr Marshall told me it was solid findings that were released and presented in June. I do think Felice is right, let's make our decision which path to go towards when we get to the bridge which should be Friday/Monday time-frame.

Scott has been doing great. Been working and although he is still tired he is pushing through. We are obviously hoping for a no chemo option so we can begin making plans/doing things to get our life back on track. We were thinking the chemo path up until now, so weren't really doing any sort of planning not knowing how chemo was going to be for him.

I am emotionally drained. I think that my mind and body are overloaded with information and stress that it's starting to hit me hard. Either that or I am getting sick. I'm still doing my 3x a week exercise boot camp at 545a and trekking the kids to and fro parties etc. Will life ever slow down? (that's rhetorical)

Mission: Mass Transport

So the mass is being fedex'd to the lab for the testing. We should know by Monday at the latest. If he does test for the genetic markers then he would need to start chemo within 60 days of surgery which would be Friday, September 26.

Scott has to go for a Hep A and Hep B blood tests by next week as well. The blood they took on Friday apparently didn't cover these other 2 tests.

A Sunday like any other..

Today was pretty uneventful. Scotty hasn't been sleeping so well since the surgery. He usually gets up a few times during the night to go to the bathroom. Last night he actually slept through. That is progress! It's hard on a person not being able to sleep a full night.

He has been having some cramping but overall I see an improvement in him. He still tires easily but you can tell he goes for longer stretches.

We will find out more tomorrow about the Georgetown study and if they released Scott's tumor. I also am urging Scott to call Dr Felice. Seems to me that Dr Felice pushed hard for us to go see Dr Marshall, so he probably respects his opinion and can maybe offer us some reassurance that we are headed down the right path.

The Polyp Maker..

So after waiting almost 2 hours to see Dr Marshall at the Lombardi Cancer Center, we were met by a 4th year med student who took Scott's entire history to see if he qualifies for this international study they are doing. He does, but the catch is they have to send the tumor off within 50 days of surgery --- that means Tues, so we have to act fast.

Dr Marshall came in to talk to us and he said he was going to talk to us about what Scott has as if we had not talked to any other dr. He said some things that differed from what Dr Felice said. First he said that Scott is a polyp maker. No history and so young. He said that T3 Stage 2 tumor stats - 75 out of 100 show no cancer after 5 years, 25 out of 100 get some kind of cancer. Quite a difference than what Dr Felice said. Dr Marshall said that the numbers that Felice gave us were quite old and this is the latest data. However, with Scotty's other factors - the tumor being moderately differentiated and the 45 lymph nodes found with NO cancer means his numbers are probably more like 80-90%. Hmmf?!?

We talked about the genetic testing we did and that they tested the blood, not the tumor. They needed our consent to have the mass sent to a lab to see if he has 2 of the markers. Even though they tested the blood that would show the markers in only about 6% of all people. There is still an approx 25% chance he has the markers and they would show up in the tumor itself.


So our options are a bit different now..

1. If Scott is found to have no markers, then he will not be receiving any treatment. You read that right folks. NO CHEMO. Recent studies have shown that treating these patients actually may do harm to them and decrease the % by up to 15%.

2. If he has the genetic markers, he will be put randomly into 1 of the 2 paths.
a. FOLFOX for the 6 month treatment
b. FOLFOX for the 6 month treatment, and then 6 months of Avastin.

If he does not receive any treatment, he will be seeing the dr every 3 months for scans, blood tests, evaluations for 5 years I think.

This is like a rollercoaster. One day chemo, the next day port surgery scheduled, the next day no chemo. Now considering that Dr Marshall is an expert in the field and specializes in colorectal cancers, I believe he probably has the latest and greatest research at his fingertips. It's just so drastically different than what Dr Felice told us. I suggested to Scott to call Dr Felice to talk with him about it. I mean it's great news that there is now a chance that we won't have to go down the chemo road, but this is the very first time we have heard this. So it's almost questionable.

We were there for probably over 4 hours total today. They took blood and urine and Scott had to sign a bunch of paperwork authorzing them to be able to test the tumor. We will be in contact with Georgetown on Monday to verify that the hospital released the tumor (sounds so odd to say that) and then away we go..into an international study. That part I think is pretty cool.

Slight change of plans

Looks like they are going to evaluate Scotty for the clinical trial at Georgetown, so the port surgery will be rescheduled. We have an appointment at Georgetown to see Dr John Marshall tomorrow at 1130a.

John Marshall, MD, is a global leader in the research and development of drugs for colon cancer and other GI cancers. He is the principal investigator of over 150 clinical trials, at the local as well as national levels. Dr. Marshall is the clinical director of oncology for Georgetown University Hospital, associate director for clinical care of the Lombardi Comprehensive Cancer Center, and chief of the Division of Hematology-Oncology. He is widely published in the field of clinical oncology, reviews manuscripts for eight journals, and holds peer-reviewed grants from the National Institutes of Health.

Dr. Marshall's own research focuses on the development of a novel vaccine for the treatment of advanced colon cancer. For over a decade, he has directed Lombardi's Developmental Therapeutics Program while also maintaining his regular clinical practice. Seeing about 60 patients each week, Dr. Marshall specializes in cancers of the GI tract at all stages of the disease.

Getting it out of my head

Having a blog like this is a catch 22 really. There are things I want to say that are related to this journey but not knowing exactly who is reading, automatically makes me censor my thoughts.

Scott was at work today but he is still recovering so he went home a bit early and then got on the phone to do a conference call. We are all so committed to things it gets hard to slow down.

I am finding out that when someone close to you is sick, It's really the time when you find out about those around you. I am constantly amazed at the love and generosity of so many of our friends. They go out of their way to offer help, an ear, support. It means so much.

Then there are people in your life that when they heard about Scott, they were the first to step forward but when you actually do ask them for help, they are no where to be found. They actually become very insensitive and mean about the whole thing. What we e are going through is not over. I know Scott had surgery and he is recovering but that doesn't mean our life is just as it was. I am a working mom who goes home and then has to run my house and I don't necessarily have the luxury of my partner being able to help out. He is trying to do what he can, but the reality is he's not 100%. Its just inconceivable to me that here we are in the midst of something that is hard - emotionally, mentally and physically - and people won't step up to the plate, cut me some slack, be understanding that I may not be myself, that I need extra support, that I need someone to lean on personally and professionally. And we still have chemo to get through.

I am normally a very strong person, but the last week or so, I just haven't really felt like myself. Maybe its the reality that we are far from finished fighting, maybe I have found out people's true colors.

I know -- focus on the positive, but sometimes that's hard to do when you are finding out that people that you spend a lot of time around don't truly have your back.

Catching up with friends.

Scotty discovered that he had a small infection in his incision again yesterday, so he called Dr Otchy first thing this morning and went in to see him. Dr Otchy reopened the incision, drained it and then instructed Scotty to drain an disinfect it daily. Scotty says it hurts like hell again. Joy.

Scotty made it through the entire BBQ, which was a relief. I know he enjoys spending time with everyone so it was good he was able to stay. He sat for a while on the picnic benches catching up with friends. He was worn out when he got home though.

The BBQ went off great. We had beautiful weather, a nice pavilion area and a ton of really happy kids. Now that the kids are getting bigger, its hard to stay in touch regularly, so this was just such a nice day. Catching up with everyone and seeing the kids getting bigger, its hard to imagine they were all little babies laying on the floor at one of our first playgroups 5+ years ago.

I was thinking about perhaps setting up another early fall BBQ again just because it was so nice for everyone to get together. *Thinking* is the operative word.

Random thoughts

Something kinda hit me hard today....life is different for us. We were over our friends house hanging out with some other couples and Scott wasn't feeling well. I drove him home early and came back. It's so strange to have to be out with other couples without him. One word, our little family will have to be: flexible.

Tomorrow we have our annual picnic. Scott and I are taking different cars so he can leave if he needs to. Sad but necessary.

And away we go!

Scotty called the Drs office to tell them we are going to go ahead with chemo. They had not yet gotten any more information on the clinical trial but were expecting to by next week at the latest. They scheduled the port surgery for next Friday at 730a.

Now I have to figure out how to coordinate getting the kids to their schools and getting Scott to Reston Hospital by 730a. Annette can probably get the kids off so I am going to figure out how to make that all work out.

I have been doing some reading about chemo and I think I will stop doing web research on it. The more you read the more confused and scared and relieved and upset and calm and anxiety ridden and at peace...you get the idea.

The 3rd annual playgroup picnic is this weekend on Sunday. It is the one thing that I try to plan every year for the families that have been together since Hannah was 12 weeks old. We have been through it all together. We are all so busy now with the kids getting bigger, its nice to get all together and catch up and play. I am looking forward to seeing everyone and having the kids tire themselves out. The weather should be great on Sunday.

Oncology mumbo jumbo

without treatment
90 out of 100 people are alive 5 years later
10 out of 100 die from cancer

with treatment
92 out of 100 are alive 5 years plus....
8 out of 100 die from cancer

Wow. I had not really thought about it in terms like that. I was pretty upset after talking to the oncologist.....

So what Scott needs to decide is "Is he comfortable with that 10%?" Dr Felice said if it were his brother, he wouldn't be. That he would want to make sure every stone is turned and we do everything b/c he could be part of that 2 that are saved by it if he happens to be in that group. So Scott needs to decide by tomorrow really... and the Dr said you can hear your families thoughts but in the end its up to him - it is his life we are talking about.

So, he is going to go ahead and do it. They will put a port in him and then he will go in every 2 weeks for treatment. The treatment is a 6 month course. Standard treatment for colon cancer is FOLFOX4 Based. It's so clinical isn't it? Say he goes in on a Monday...he will go in for a few hours to get chemo, and then they send him home with a 2 day pack of chemo attached to him by his port - or "port-a-cath" inserted in your upper chest wall (the space between your collarbone and your breast) to make chemotherapy easier and more comfortable. It is a simple, same-day procedure that doesn't require general anesthesia. The port is about the size of a quarter, only thicker, and will show only as a bump underneath the skin. He would come back on Weds to have it removed and then does it all over again 2 weeks later. He will receive two of the drugs over a five-hour period in the medical facility, and the third drug is in a pump that resembles a video cassette that he can carry around with him. It's attached to the port and he will take that drug over a 48-hour period.


We will talk to the dr tomorrow to figure out when we start.

Dr Felice mentioned there is a study going on at Georgetown for stage 2, t3 tumors that he was going to call about to see if it was still open and see if Scotty qualifies. They add one other med to the FOLFOX4 Based therapy - so Scott would not get less than standard treatment but may even be part of the group that gets the extra med. We should know this week more about that.

Some updates we got from the oncologist: they actually took out 45 lymph nodes (the rest were found in the fatty tissue surrounding the colon) and none showed any cancer cells. The tumor was moderately differentiated and mildly mucuosy. All of those are good. Scotty is still anemic - about 4 pints too low.

Dr Anthony Felice is from Brooklyn. He is very easy to talk to. He spent 2 hours with us yesterday talking us through it all and making sure we understood. He is also a magician so he spent 30 mins of that 2 hours doing card tricks with us. He was so good, he even did one where the marked card showed up folded in his shoe. I was frustratedly impressed with the tricks.

I am very overwhelmed by it all and I find this all scarier than the surgery. This week has been tough. Scotty somehow went back to work only to leave the same day at4p with a fever of over 100. The drs think its just a bug but he was out of commission for the past 2 days. Hannah is super tired by school and our new routine needs some getting used to.

But we will get through it like we always do. I think this is just the beginning of this journey...

Return of the Scott-I party

The folks at AOL threw Scotty a welcome back party complete with Darth Vader. Here are some of the pics I took.

Tues - Sept 2

Wow, lots of things going happening on Tuesday. Scott returns to work, Hannah starts 1st grade and her first foray into public school. Nate starts in his new pre-kindergarten class and I return to work after vacation.

We have to create a new morning routine to make sure that HB gets to school by 750a. That is what time school starts for her. I don't remember school being that early when I was that age. Because we don't live too far from the school, she isn't bussed so Scott and I will have to figure out how to get her there on time and then get Nate to daycare. I am sure it will all be fine once the kinks of the first week work themselves out. And 3x a week i do bootcamp at 545a for 1 hour. So lots going on in the mornings.

Hannah is being picked up by the AOL van and brought back to AOL learning center after school and then we will pick up Nate and HB all together. Hannah and her bff Maya will be picked up together at Dominion Trail Elementary school. Should be a fun and intersting day of firsts! Hannah is so excited by 1st grade and I am so happy to see that. I think I am more nervous than she is! I am sure I will shed some tears tomorrow morning. Hard to believe she is in 1st grade already....

Scott is heading back to work tomorrow. I think he is a bit nervous as he is still recovering somewhat. He gets tired easily so I told him take it a step at a time. If he feels overwhelmed, ease back into working full time. I am sure his work team would be ok with that. But I leave that up to him to gauge. I am happy to see life returning to some sort of normalcy. We have the oncologist appointment Wednesday at 3p to talk about next steps..chemo or no.

On vacation

We arrived on Saturday around 7p. It took us about 10 hours. We had to stop a lot for bathroom breaks. I was looking at it like this: we have no where to go, we are on vacation - so it took us as long as it was going to take us. The kids on the other hand, lost patience at about hour 7. But we did arrive and found the condo.

We were pleasantly surprised by the condo. The overall hotel/resort is in need of updates, but our condo was privately owned and very well kept. That was a relief. We are in a perfect location - right on the beach, 1 block from local stores and restaurants and a 10 min drive to anything else we need.

Sunday we went to the beach and the water park. Then went to lunch at the Hard Rock Cafe (for scotty). Then back to the beach for a while.

Monday we went to Ripley's Aquarium at Broadway on the Beach, rode some rides and then saw Star Wars: Clone Wars.

Tuesday we went to the Hard Rock Theme Park. The park was EMPTY so it was great. We went on the rides many many times, saw all the shows and then saw a pretty good fireworks show. We were pleasantly surprised by this park actually which is saying a lot knowing Scott's Disney fetish.

Wednesday we went to the beach and water park, then went to Dick's for lunch, then went to Alligator retreat. Then we went to the pool some more, then out for pizza. This was a very long day.

We are not sure what is on tap for tomorrow but I am sure we will find something to do...

Update:

Thursday we let the kids go to Broadway on the Beach and pick out something. Nate went to a store called Ridez and built himself a mustang car. He could pick out the car, the rims etc. He loves it.

Hannah decided she wanted to go get a make over at Libby Lui complete with make-up and hairstyling and lots of glitter! She looked beautiful.

We then went back to the hotel to rest a bit then decided to go to Medieval Times where they do a jousting show while you eat dinner with your hands. The food wasn't the greatest but the kids loved the show.

Friday we played Put Put golf a place called Atlanticus. Funny thing happened - we ran into Kyle one of Hannah's daycare friends. We knew they were in town but had no idea where and wouldn't you know it, they showed up same place and time by coincidence. We had just randomly picked this put put place. We then started to get packed up upon our return to the hotel. I took the kids to the pool for a while, and then we got cleaned up and started our trip back to Northern VA.

We arrived home around 1230p (7 hr drive time) and we all appreciated sleeping in our own beds.

Off on a much needed vacation..

We are headed to Myrtle Beach, SC tomorrow morning and will be staying at a condo in the Dunes resort. See you when we get back!

8.20 Follow-up appointment

Scotty just met with Dr. Otchy for a follow-up. He said everything is looking great and we are cleared for vacation. The Dr. said that the ocean water is actually really good for his wound but don't go swimming in the heavy current. Scott no longer has to pack his open wound, just bandage it up. He is driving again too. The Dr also said that he can return to work at the beginning of September.

He still can not do any heavy lifting or straining for another 3 weeks. He can now proceed to eat whatever he wants. Including VEGETABLES and FRUITS.

The genetic testing that we had done came back and Scott does NOT have any of the 3 identified gene markers for colon cancer. So why he got colon cancer is anyone's guess. The kids do not need to go through any gene analysis/therapy, but he did say that they should get colonoscopies in their 20's because of Scott's experience.

The artistic kids....

Below are some drawings the kids made while Scott was in the hospital. I hung them up in his room so it would cheer him up. Enjoy.


Whenever we take Hannah anywhere, we always have something for her to draw with. Hannah is an artist to the core. She even falls asleep with a pen and paper in her hands most nights. It's instinct for her to draw. So when I took her to see Scotty at the hospital, naturally she wanted to draw. Here are 2 of her drawings from that day.

Fairly straight-forward drawing of Daddy in his hospital gown and bed. Not sure about the ears, but we will go with it for the sake of creative integrity. She then created another rendition, this time taking a few liberties.......





Does this one need more explanation? I think not...



Nate is a very abstract artist and most of the people he draws look eerily like Jack Skellington. This is a picture of Scully, the dog (upper right), Hannah in orange (black thing on her head is her hair), Me in brown, and Nate in black. We had been talking about how some people have hair on their arms and legs and he took that to heart -apparently- by drawing it on himself all in the name of art.

Cancer

Cancer. It is really everywhere. The weekend we found out Scotty had cancer, Tony Snow died of colon cancer. Today, I read about a journalist for NPR that chronicled his colon cancer fight - where cancer won the battle. Some quote on Leroy Siever's page (http://www.npr.org/blogs/mycancer/) really stood out to me:

After that day, your life is never the same. "That day" is the day the doctor tells you, "You have cancer." Every one of us knows someone who's had to face that news. It's scary, it's sad. But it's still life, and it's a life worth living. "

I think its me being selfish sometimes, but hearing all these people with colon cancer dying is so scary to me - and I don't even have it. It's Scotty who has to deal with those emotions and the reality that his body has (had) cancer.

Another week begins...back to the grind of the work week.

Sat 8.16

This weekend has been a bit tough. A friend of mine very generously gave us some sweet seats to see the Washington Nationals baseball team on Friday night. The seats were on the 3rd baseline, 11 rows up. She even threw in some rock star parking in the garage right in the stadium. None of us have seen the Nats play and for the kids, it would be their first game. So, even though the Nats aren't good, the seats and experience promised to be!

My mom actually was in town Friday for a class she was teaching. She wanted to stop by for a quick dinner before we all headed out to the game. We got through dinner ok, but towards the end of it, Scotty didn't feel well. He made the very hard decision to not go to the game. The kids were excited to go and had been talking about it all week. I decided to go without Scott and drive into the city.

For those that know me well, know this is a HUGE accomplishment for me, since I have an unreasonable fear of driving in DC. I have the trusty nav, so I felt ok about it. And although I did get lost a few times and it took a while for the nav to catch up, I made it just fine and just a few minutes late.

We all got settled, got some cotton candy, drinks etc and then I started to explain the game to the kids a bit. Hannah and Nate both brought their mitts to the game in hopes of catching a ball. Well wouldn't you know it, the boy in front of (who brought a mitt as well) caught a ball. Directly in front of us! The girl in the row behind us caught a t-shirt as well. We went home empty handed with regards to a ball. Oh well. We did get caught in a rainstorm and the 3 of us decided to weather the storm - Hannah said we aren't going to melt! We ended up leaving the game at the bottom of the 7th inning with some dippity dot ice cream for the kids in tow. They both fell asleep within 5 mins of us leaving the parking garage. The Nats lost for those that care.



Scott has been having some off days lately. His stomach doesn't seem quite right and he is weak. He has been able to run an errand or get out of the hosue for a bit, but anything more than an hour or so away, he needs to go home. I think the issue is when he starts to feel better, he wants to go out understandably. But that is exactly when he should rest more. Double edged sword of sorts.

Saturday was a mixed bag. Scott wasn't feeling well again. We decided to run a quick errand and then spend the rest of the day at home. Hannah went over her friend Reagan's house for the day. They have a pool so she came home super exhausted. Nate did the quick errand with us, then my neighbor Tom came by and asked if he could take Nate down the street to play with the other kids there. The kids down the street have a big moon bounce water slide and Tom thought it would be a great help to occupy Nate for a bit. He thought right. I was able to start to organize and de-clutter my garage a bit, do some laundry, and clean the kitchen. Thanks to both Heidi M and neighbor Tom for helping me accomplish some things today by watching the kids. It is appreciated. I then grilled some turkey burgers for Nate, Scott and then went and picked up HBea. I'm pretty tired as you can imagine.

I hope Scotty is feeling better tomorrow. It's tough seeing him like this.

Thurs 8.14

Not much to report this week - which is good! Makes for a boring blog, but what can you do?

Scotty is still recovering slowly. He left the house a few times this week with his buds. He still can't drive so they have dropped by to get him and take him out.

All of our friends are checking in-which is great. Thanks to Amy J for bringing us dinner this week. Also, those let's dish meals from Scott's team have been great. The kids have loved every one we have tried so far.

For those that have seen Scotty recently - he is growing a beard while he is home. It seems to have gotten mixed reviews from those that have seen it. Me, personally, I think its nice to try something different once in a while.

Mon 8.11

Lots of people are calling to see if we need anything. Thank you all so much. I am not sure I need anything right now but I will be sure to let you know if I do. These posts won't be as exciting or chock full of info anymore. We are just recovering. We do have an appointment with Dr Felice, Sept 3 to talk about chemo and any other follow up treatment he needs.

If you do want to come and visit with Scott, please give him a ring. He is the boss when it comes to his time at home alone.

Scott got a bit stir crazy today so he asked that i come get him before I got the kids, so he could get out of the house. He is still weak and it takes him a while to get going. I think he may have pushed himself a bit because his incision was leaking a bit when we got home (TMI - but its my blog!).

How is he going to home-bound for the rest of August??? This is the guy who hates to sit at home and relax. This is going to be tougher than we thought.

One thing I find interesting to mention. We are daily getting invoices from the many many services we have used. It's mind boggling how to keep it all straight. One day we get a notice saying we are not authorized or we are denied and the next day in mail, the letter says you are. Just have to keep a level head when looking at all these bills I guess.

Life Resumes..

You know it is true what they say...that life goes on.. Our life is continuing on. Scott is recovering and we are adapting to all that entails. Today is the first day we are home alone and we got through it ok. I took the kids to my friend Ellen's lake house and Scott had the day to himself. Thanks to Ellen and Bill for being great hosts.

Hannah had a small mishap and hurt her foot a bit but seems to be on the mend there.

I return to work tomorrow morning after boot camp. It will be an interesting morning - getting the kids ready and then getting them all off to camp.

Our life journey has a small detour, but we are adjusting. I will be calling the oncologist tomorrow to schedule our follow up appointment.

Saturday

We don't really have anything exciting to report today. We drove Connie to the airport and then returned home to rest.

As I said, Scotty is still pretty weak so anything more than a quick jaunt out is a lot for him to handle. I set up the portable pool to keep the kids busy.

His incision seems to be still leaking a bit, so we may call the Dr on Monday to see if that is normal.

Nothing exciting

Scott is still recovering. His incision is open which still takes some time to get used to. He saved me the uneasiness by changing and cleaning it by himself.

He is still fairly weak and tires easily but was able to go to Hannah's High School Musical camp show around lunchtime.

He is starting to eat fruits and vegetables but softer fruits (peaches, grapes) and well cooked veges.

My sister Connie has been a lot of help this week - helping get Scotty what he needs, doing his 15 loads of laundry (no exaggeration), and the biggest job of all - watching after the kids. She leaves tomorrow and then life will have to get back to normal with the exception of Scott not ready to return to work. I am headed back to work on Monday which I am excited about.

Thank you so much to Kerstin for bringing by a suprise dinner last nite. You are so sweet!! And just thanks to everyone for all your support and love.

Dr Otchy took the catheter out this morning. Scott was so happy.

He also opened up the incision a bit to drain it. Scott has a wound infection like we thought. Very common occurrence he said. He opened it up and drained it. He has left it open and showed me how to clean and care for it. So, Scott has about 1 inch of his incision open. It was not the most pleasant thing to see but part of the journey I guess.

We will see Dr Otchy in about 2 weeks, right before our Myrtle Beach vacation. He also said that if Scott feels up to it and is off his percocet, that he can drive in about a week.

Then he said that Scott is doing great overall and gave us the information to take to the oncologist in September. We are going to see Dr Felice in Reston. Many people have recommended that we see him.

Weds Night

Scott has a wound infection. We called the doctor at 1030 because his incision was leaking. The Dr said to put warm compresses on it and come in first thing in the morning. It was a kinda scary thing but the Dr didn't seem phased by it.

It's not hot to the touch and he is not running a fever -- and he's on antibiotics. They will need to drain it this morning and hopefully we can have them take the catheter out.

recovering update....

Scott has been taking the cipro and the infection doesn't seem to be getting worse. He is complaining that his arm hurts but if you look at it, it has a bunch of bruises from all the shots he received in the hospital - so I am sure that is it.

He is not running a fever and nothing is hot to the touch so we will just wait to see the Dr tomorrow at 11a. We are hoping that the catheter will be removed tomorrow as well.

Thanks to everyone who has been helping with the kids. My neighbor brought over some dinner last nite which was appreciated. Hannah is going to a High School Musical camp this week from 9-12 and Ellen, Netty and Liz have helped pick her up and entertain her.

Everyone wonders how the kids are. Well Hannah is just being extra sweet and gentle with her Dad. Nate is off kilter a bit. I think it's because we are off schedule and there is an air of change at home. Every night at dinner time he seems to be throwing this enormous freak out crying fit for some random, insignificant reason. It makes for a pleasant dinner - I tell you.

Day 1 at home.

Scotty wishes we had a craftmatic adjustable bed at home. Its tough getting in and out of our bed but he's making it work. He's still in a bit of pain and the percocet just isn't cutting it.

I did make a late night run for jello and pudding for Scott since he can not eat anything healthy (fruits or veges) for a bit of time due to the fiber in them. He doesn't seem to be that upset about it actually.

Hannah and Nate have been so good. Nate was so happy to see Daddy this morning. Hannah helped Aunt Connie make dinner - she makes a killer salad and has just been so helpful. She has been the first one to jump up and offer to get something for you. It's very heartwarming to see Hannah be so helpful and sweet.

Evening Update: Scott started getting what looks to be an infection in his lower region. We called Dr Otchy who prescribed Cipro. Scott said he was getting the chills so he is taking it easy. He did manage to eat a good dinner and has resumed his Sweet Tea regime. We have a follow up appointment on Thursday to see how things are going and if we can get the catheter removed.

He is still in a lot of pain but seems to be handling it well. I think being home in general helps people heal faster.

Yeah! Scotty is Home

The Dr discharged Scotty around 1p today. They sent him home with some percaset and a catheter. We will see the dr again on Thurs to get that out.

He has to take it easy for at least 2 weeks and no heavy lifting or stairs.

We are so happy to have him home!

Sunday

Scotty had his catheter removed this morning and the dr said he can try to eat some liquid food. I spoke to the dr who told me that the mass was classified as a t3N0M0 which is a stage 2 tumor - and the studies are mixed whether a course of chemo is going to be helpful. We will meet with Dr Feliz in September to discuss options and risk factors. Dr Otchy did say that for as large as the mass was this was the best news we could hope for and that Scott is very lucky.


Stage II: T3 N0 M0; T4 N0 M0
Cancer has spread to other organs near the colon or rectum. It has not reached lymph nodes.
T3: Tumor invades through the muscularis propria into the subserosa, or into the pericolic or perirectal tissues.
N0: No regional lymph node metastasis.
M0: No distant metastasis.


Scott had penne pasta and meatballs for dinner tonite and seemed to be ok. He did have one set back. His bladder doesn't seem to be emptying so they had to do another cathether. Talk about being unhappy about it!

He is getting up and walking on his own now and just generally feeling much better. Thanks to Pat, Digi, D3 and Hannah Bea for keeping him company. And a big call out to Chris F for helping me with my lawn. Scott did quite a few laps around the 4th floor today and is little speedy gonzalez. Hannah told Scott "Daddy if this was a race for the slowest person, you would win". We all laughed a lot on that one.

The Dr said he may be able to come home Monday night or Tuesday morning. It's been rough on both of us so we are anxious to get him home.

Saturday - the rest

I went back around 4p and Scott was getting back in bed after sitting up all afternoon. He is having a lot of gas pains but that's a good sign that his digestive system is getting back on track. He walked a second time today but his legs are so shaky and he's so weak - we did a half a lap.

He did have 2 sips of tea! and some ice chips.

Ryan came by to watch a movie and Paul Biernacki stopped by. No idea when he will eat yet, but he still really doesn't have much of an appetite.

Seeing some results

Scott walked this morning! I pushed him a bit to walk and we did a lap around the 4th floor. It was painful and took a while but it was great!

The Dr stopped by and told him he needed to get up and walk at least 4-5 times today. He can have a sip of water or tea and they took the drainage tubes out. He is having a lot of gas pains today and I think those are worse than the incisions.

The pathology came back. Looks like they grabbed 12 lymph nodes and none of them showed any signs of cancer. The mass did hit the colon wall so they said it is Stage 2. The cells are the kind that tend to be faster moving/aggressive but the dr thinks they got it all. He said once Scott gets home and settled, we will meet with an oncologist to decide whether we should proceed with chemo. It's going to be a tough call.

Ryan is hanging with him for a few hours today and I am taking the kids out. I will head back later today to spend the evening with him. My mom leaves tomorrow and my sister, Connie, will be arriving around 430ish to be here for the week.

Friday

Scott looked so much better today although he still is in pain. He did rate the pain a 6 which is a marked improvement. He got up from his bed and sat in a chair 2x today although the nurse told him if he felt dizzy to not walk - so he didn't.

He has been having some bloating and gas pains and the only way to get rid of them is to walk it out. So tomorrow we will be walking.

He had some very funny visitors today - Jen Towns, Julie Ann, Digi, Ellen B - thanks for lunch, Annette, Judy- who brought Star Wars balloons, Vanessa and neighbor Bob. Thanks Lauren for the cake!

His spirits are up although he has asked if there is an alternative to the drugs they have him on. They make him cloudy. Right now the dr and anesthesia say that's what he gets.

He still has very little stomach sounds, so still no food although he doesn't have much of an appetite. He is very weak. They can't even begin to tell us a release date until he eats - which I think until he walks - he won't have.

He has been sleeping on and off but it's hard to sleep in a hospital. Things are constantly beeping, or someone is coming in to take vitals, or some random noise. It's not very relaxing environment.

If you would like to come to see Scotty this weekend, please call my cell 703.203.3660 so we can figure out a good time to fill the gaps of when I can't be there this weekend.

Thanks again for all the support and prayers.

Update for today

Today was a mixed bag. While Scott's pain is better it's still there. The nurse tech urged Scott to get out of bed today, so he mustered the courage and went from the bed to the recliner chair 2 separate times. It was very painful and took a lot of work, but it's all on the road to recovery.

They heard some faint sounds in his stomach/bowel area but not enough to let him eat. He is getting skinnier by the day. He is still on ice chips only.

The Dr stopped by early this morning and removed his bandages and he looks like he has a zipper in his pelvic area. I believe they used adhesive glue instead of staples or stitches. He still has the draining bags, catheteter, and various IV tubes. They are also giving him heparin every day to thin his blood. He also has these wraps on his legs that give his legs a massage to help prevent clotting.

His spirits were lifted today by visits by Tom L, Hale and team, Matt P, Joyce, Vanessa and Heather. They made him laugh a lot.

His pain button dispenses Dilaudin every 6 mins. and he hasn't been using as much as yesterday evening. He isn't sleeping much, so he's in and out of dozing mode. He was able to clean up a bit and brush his teeth. I think that helped him feel better.

We may get the pathology report back tomorrow but I am willing to bet next Tues will be more like it.

I am with him at the hospital until around 7p every day. He needs a lot of help moving around etc. I want to just thank everyone for your kind thoughts, prayers, check-ins. We are so lucky to have such great people in our lives. Shmultzy I know - but true. Thank you.

Shirts in Action

This is Scott's mom!


Scott's sister Jennifer and his Dad wearing "the shirt"


Dad and Jennifer!


Mom and Jennifer supporting their Scott!

24 hours after surgery

Scotty has been in alot of pain today. The Dilaudin they have been giving him once every 3 hours seems to wear off at hour 2. They finally switched him to a pain pump that he can push every 6 mins. Hopefully that will help.

The nurse came in today and made him move on his side a little bit much to Scott's dismay. It hurt like hell. He had been lying on his back for 15 hours and needed to get his body moving a bit. They did not make him walk today due to the pain.

I think he's a bit down. I think he thought he would be able to play games and be up more today. He is in and out of sleep. His throat hurts too due to the intubation. They keep listening for bowel/stomach sounds which would signal that he can have something to eat - broth or jello - but so far its all quiet. He can chomp on ice chips and thats about it.

I was there all day today until about 7p. I am hoping he will be up for visitors tomorrow.

I am stealing this from Scott's site..www.colonc.org. This was posted by our own Auntie Nettie:

Comments from patients made while undergoing colonoscopies…

1. “Take it easy, Doc, you’re boldly going where no man has gone before.”

2. “Find Amelia Earhart yet?”

3. “Can you hear me NOW?”

4. “Oh boy, that was sphincterrific!”

5. “Are we there yet? Are we there yet? Are we there yet?”

6. “You know, in Arkansas, we’re now legally married.”

7. “Any sign of the trapped miners, Chief?”

8. “You put your left hand in, you take your left hand out. You do the Hokey Pokey…”

9. “Hey! Now I know how a Muppet feels!”

10.”If your hand doesn’t fit, you must acquit!”

11. “Hey, Doc, let me know if you find my dignity.”

12. “You used to be an executive at Enron, didn’t you?”

13. “Could you write me a note for my wife, saying that my head is not, in fact, up there?”

More news to share

Scotty was brought into his room at Reston Hospital room 452.
1850 Town Center Pkwy
Reston, VA 20190

He is in quite a bit of pain but they have given him Dilaudin and Demoral and they are waiting for his pain tubes to take effect. They work by sending off a certain amount of pain meds to numb the area but it takes a while for it to work. He was in and out of sleep when I was with him but right before I left he seemed to be in less pain than earlier.

They were able to do it laparascopicly but the mass was lower in the rectum so they had to do a little larger cut but still rather small incisions. He has drainage tubes out of each side of him but overall the site of the operation looked rather good.

He had lost approximately 10lbs this week from all the cleaning out. They gave him some heparin to thin his blood prior to surgery and then an antibiotic during surgery. They currently have him using a massager thing for his legs so that he won't get clots.

The Dr said things went well and as for when he will be able to go home, I think that depends on how well he recovers and how soon he can use his functions again. My guess is somewhere between 4-5 days.

As you can imagine, I am relieved and feel like a huge weight has been lifted. Thanks so much for Div and Annette for spending the day with me. It really helped me a lot.

I will be at the hospital tomorrow and hopefully he can have visitors. The nurse said today will be the worst day in terms of pain. They will be making him walk tomorrow to get his body moving and the oxygen flowing.

Good News

Dr Otchy just came out and said all went great. The mass was lower in the rectum than they had thought but they were able to do it laparascopicly but with a minor modification. The mass did not look like it had spread - it appeared it was contained. Pathology will take about a week to get back. He is in some pain b/c the pain tubes will take some time to take so they are giving him some IV pain meds. I will be able to see him in about an hour.

Annette and Div have been keeping me in stitches. LOL. The time went by very quickly.

I will update more later.

Test post from my blackberry. We are planning on using Scott's blackberry to post a message tomorrow. It doesn't need an Internet connection so I will post as soon as I have something to share.

The weekend

Not much to report. Scott and I are taking care of last minute house stuff and he had to go get some blood work done pre-surgery. We are nervous of course, but we are staying positive.

We did tell Nate and Hannah yesterday. Nate wasn't really interested but Hannah was upset. We told them that "Daddy is going to have an operation on his tummy because he hasn't been feeling well. The Drs will help his tummy feel better." Then we explained he will be in the hospital for a while then come home and we will have to be extra gentle and nice to him. She cried and said she didn't want them to hurt Daddy.

My mom is driving here tonite and Annette and Div will be at the hospital with me. We are going to have a hospital waiting room party at Reston! My older sister, Connie, will be coming from Oregon the following weekend to help out.

I am not sure what the connection situation at Reston Hospital is, so I will update as soon as I can tomorrow. Please say a prayer for him!

We Have a Date

The surgery is scheduled for Tuesday July 29th at 1:45pm. Scotty has to go in for some blood work before Tuesday at Reston Hospital.

We may have a date....

We talked to the surgeon's office. It is looking like it will be this coming Tues, July 29th. We have to wait to confirm completely because they are waiting to hear back from Scott's urologist. A bunch of people have bought shirts at our cafepress site and we are all going to wear them on Tues or the day of his surgery to show our love and support.

Still no word..

We are still waiting to hear from the surgeon's office about a surgery date. They said it can take up to 7 days to coordinate. We do need 2 colorectal surgeons, 1 urologist, and an anesthesiologist during the surgeon so I am sure that takes time to schedule.

Scotty is feeling pretty good. We are both staying focused on the goal - kicking cancer's ass!
I did go to Wegman's this weekend and bought more whole and organic foods than normal. I have him drinking a probiotic smoothie every day.

Scotty and his friend, Chris are tooling around making a website. Chris created this logo and you can buy shirts!

http://www.cafepress.com/colonc

Planning the attack...

We verified that the mass is in Scott's upper rectum which acts like the colon, so we can proceed with surgery. We will be having surgery asap. We should hear back from the dr and the hospital about a date early next week. I would imagine we will be scheduled within the next 2 weeks.




During the surgery, they will need 2 colorectal surgeons and a urologist. Because of the location, of the mass the urologist will need to go in and put stints in his urethra to ensure they do not do any damage to them and put in a catheter. The surgery will take upwards of 4 hours and they are going to try to do it laparoscopicly. This is good because the recovery time is much quicker tha if they have to open him up. If they find that during the surgery, its not working out well, they will go the other route. They will be taking out a whole section of his colon and reattach what's left to his lower rectum and he should be able to resume normal functions within the 5 days in the hospital. They have a new process they have been using that uses pain stints or tubes directly in the area of the colon so it lessens the need for IV pain meds and recovery time tends to be quicker. When he leaves the hospital, he should be able to resume normal activities within reason upon leaving.

The colon area taken out will be sent to pathology and based on that they will know what course of chemo we need. The mass is fairly large and is not even or uniform like predictable cancer cells. It is bumpy and uneven. They say they are abnormal cancer cells which is not a good sign. These types of cancer cells tend to spread and move faster which will mean that they may want to be very very aggressive with chemo. We will be meeting with an oncologist once we receive the pathology report after surgery.

The surgeon is concerned about Scott's blood level so they will make sure that they have plenty of blood for a transfusion. Scotty has a rare blood type, so they are going to have extra on hand.

Next steps, Scotty will go in for some blood tests in preparation for the surgery and we will wait for the surgery to be scheduled. He gave blood today for genetic testing which won't affect the course of action we are headed for, but will help Nate and Hannah in the future.