Too Young to Have Cancer!

http://www.cuck-fancer.com/

Ben Teller is the founder of Cuck Fancer. He recently learned he's facing a recurrence of Hodgkin's lymphoma. He's 19.

More Cancer

Another young person with cancer...

Thoughts of someone close...

We went to back to school night this week. Hannah is doing a great job in her class so far and her teacher - Mrs. White -seems very kind and smart. When that was over, Scott and I went out to dinner. Nothing fancy, we just decided we had a babysitter - might as well take advantage of it. We were talking and Scotty said something that has stuck with me...I don't remember the context of it but he said he was pretty sure that the cancer will come back in some way, in some form, sometime down the road. It's not based on any fact. It's one of those things I have mentioned before -- cancer changes you. It changes the way you think. It's insidious and seeps into everyday talk. I do not believe the cancer will come back, period.

Hannah is making some new friends and has been invited to a birthday party of some boy in her class. That makes me happy. She has the ability to go into a situation where she knows few people and manage to make some new friends. I am proud of her.

Another one..

Cancer takes another one at 57.

Patrick Swayze

He fought till the end.

Recovering

With Cancer, You Can’t Hurry Recovery

Great Spirit

As he continues three months of intense chemotherapy to fight a rare form of Hodgkin's Lymphoma, Survivor: Africa winner Ethan Zohn is opening up about the medication he needs to keep going.

In an exclusive video blog for People.com, Zohn – accompanied by his girlfriend Survivor: The Amazon winner Jenna Morasca – shows off the array of prescription pills required to counter the effects of his cancer treatment.

I like his attitude and spirit as he fights his cancer battle: http://www.people.com/people/article/0,,20285771,00.html?xid=rss-topheadlines

Rising

Colorectal Cancer Rates Rising in Young Adults

Not to be a downer, but...

I don't want this blog to be a downer, but I do think it's important to note things that really touch me and realize how lucky we are in our journey.

A Dying Man's Final Message

Thumping My Melon

Another young person succumbs to cancer. It's interesting to see the different attitudes towards cancer and dying. What always strikes me harder is how a strong family support system helps attribute to a more positive approach to fighting the fight. This man, Terry, seemed to approach the impending outcome with humor and grace.

Cancer sucks.

Costs worry everyone.

Cancer Treatment Costs Worry Oncologists

Scott's treatments from what I can tell run 10K a month (before insurance)!

Avastin

Failed Avastin early-stage cancer study detailed

things that make you go hmmm...

Scott saw one of his high school alums facebook status about hoping for a clean CT, so he emailed him and this is the response he got:

Yep, I am... colon cancer as well. You, me and Marc all have it--for our age that it is pretty improbable.. I blame the Amphi cafeteria. Maybe they were serving asbestos in the burritos.

I was diagnosed December 2006... In 2007 I was in the hospital for 14 weeks because of surgical complications and during that time it spread to my lungs. The good news is the chemo seems to be keeping it in check. Unfortunately, I am probably looking at a long term dependency on chemo.

I am glad to hear that you are still clear. That is great news. I think Marc is still doing well too. Take care!


How thoroughly odd...things that make you go hmmm...

Not an Option

Sometimes I will read something that gives me sort of an electric shock of reality. I was reading up on some colon cancer news and saw this:

"Stage II (Dukes B)

The 5-year survival rate for Dukes B colon cancer is 78%."

Now I know everyone will say..you can't focus on that. take it a day at time blah blah blah. I do for the most part, but occasionally I read something, or hear something, and for a moment it sets my sirens off. That # is not 100%, it is 78%. Scott is doing so well with chemo and all I keep focusing on is us getting back to our regularly scheduled lives. I never, well not until now, stop to even consider that our rate is not at 100%. It's not an option but it is scary when you do sit down for a quiet moment and consider it.

the 'Ultimate Game of Survivor'

Ethan Zohn Calls Cancer the 'Ultimate Game of Survivor'

the young ones...

Herzlich Diagnosed With Cancer
Sooners Legend Tisdale Dies at 44

Makes you wonder...

How Many People Will Have Cancer in 2030?

How Many People Will Have Cancer in 2030?

Cancer incidence among minorities in the United States will double over the next two decades, from about 330,000 cases today to about 660,000 cases by the year 2030, a new study projects.

Hearing it again

Today we got a mixed bag of good and bad news. We learned that Scott's head scan found nothing. Good News! He is still getting them but at least we know that it's not in his head - pun intended.

Now, for the bad news. Our dog, Scully, hasn't been acting right for a few weeks. We thought it was her age. Then she developed a dry cough. We really didn't pay attention to it. Then she stopped eating. That's when we took notice. We thought maybe she didn't like her food anymore. We bought some wet food. She ate it all up. We were like wheww.. then, she threw it all up and more.

Scott took her to the vet this morning. The did a blood test which showed she had severe anemia (sound familiar). More tests have revealed she has cancer. Its in her liver and spleen. Inoperable. She has maybe 1-4 weeks left. We are devastated. Scully has been with us since we have lived in this house basically. She's our first baby. As annoying and as much work as she is, she is still our family. She has the sweetest personality. Never has shown any aggression, even when taking a bone from her mouth. She loves the kids. She loves us. She's our Scullinator, Scullini, Skuky nooks, Scully. Every morning she runs to the gate in the kitchen to greet anyone who comes down. She does it for all 4 of us. It is her way to say good morning. Her tail wags and she has that smile. She still gets up to greet us but she's slower now and if its before 6a, forget it. She stays on her chair and looks up and "nods".

What is weighing heavily on our minds is we have a trip coming up next week to California. We were going to leave her in the kennel. The vet says there is a real possibility that she will die very soon. I don't want her passing in the kennel. She needs to be with the people that love her - her family. The Dr said that he supports any decision we make, and it has to be the right decision for our family. Scott and I cried tonite. We cried not only because it's our Scully, but because yet again we hear that dreaded word - Cancer and this time we aren't hopeful and know that a decision needs to be made.

This has been a tough 10 months or so.

Chemo Session 13

Friday was fairly uneventful. We got to GT and met with Dr Marshall alone. That is one of the things I really like about our Dr. No Ego. We went over the results of the CT Scan. Everyone's scans show some stuff - which was true for Scotty - his scans showed clean. His cancer markers were no where to be found. There was some thickness near his colon but Dr Marshall said you just had surgery so that is to be expected. So for all intents and purposes, he is clear. Scott needs to go get a colonoscopy in about a month or 2 which is a month or 2 earlier than the one year. Dr M said he has no reason for concern and no reason not to move forward with the rest of the treatment.

We did review some of Scott's symptoms. Keep in mind, he has now had 12 rounds of chemo. 12 rounds of toxic chemicals added to his body so it is only expected that he has some side effects. He still is having headaches. Dr M instructed us to get a blood pressure monitor and take it to make sure it isn't elevated bp which the last drug Avastin is known to cause. His neuropathy is still bad too. The cold sensitivity has seemed to lessen. Not go away completely, but he was able to drink something cold earlier in the week without a huge amount of discomfort. It's the resonating numbness that seems to be worse. Dr M was not overly concerned by it but will be tracking it.

We headed upstairs. 7th floor, infusion. Mercedes was not on duty, so we shared our time with Sonia. We moved our every 2 week chemo to Fridays. No real reason, just something we did. It took about 4 hours total from getting into the drs, to waiting on the chemo, to administering it. It did seem like a vacation compared to the previous 12. We don't even have to wait on blood tests. One great thing is no more chemo pack to take home and return. Scott still doesn't feel "good" but how could he really.

As I mentioned, he still has these bad headaches. The Dr gave him some meds which do help but he can't take them during the day for obvious reasons. Scott took it fairly easy all weekend as he just wasn't up to doing much.

Young people and cancer

This article is a bit on the old side, but resonated with me.

Too Young for This: Facing Cancer Under 40

"No one ever told me that grief felt so much like fear."

I have been reading this blog since I read about himin the local section of washingtonpost online:

http://www.caringbridge.org/visit/ericolsen

I don't really know why I read it - maybe it's because it aligns with my thoughts or I feel for the family. I have said this before, but every cancer is different and every person with cancer has a different story to write or journey to take. So, I dont read it thinking this is my story...

One of my favorite movies of all time is Shadowlands. It is the story of C.S Lewis and his American wife. I have loved this movie for years and years and years. Today, I went and read a blog entry and she used one of his quotes. I think what she says is so true. Not only true for me and what we are going through, but true for everyone. When someone in your life gets seriously ill, it does put things in perspective. I think it takes a serious event for others to see and understand that.

C.S. Lewis says in the movie Shadowlands: "We read to know we are not alone" and I think that is fitting in this case.

"No one ever told me that grief felt so much like fear."

-C.S.Lewis

Today, Eric's life insurance check came in the the mail and I cried with mixture of sadness and awe that a piece of paper could feel so final. I found that quote above today on the internet and I felt that it embodied my thoughts on his cancer diagnosis from the beginning. For three years I wasted time worrying and fearing things that seem so trivial now. Such as paying for medical bills, lost pay, losing his income entirely, and realizing today, five weeks after his death , that I really should have focused even more on staying present . Hugging more, blaming less, feeling grateful for love freely given and spending precious time with Eric should have been goals set from the beginning and not fear gripping every minute of every hour.

Why am I writing all this down? I am not trying to be preachy or get you to feel sorry for me. My only goal , and as the oldest of four I come by this naturally, is for you to read my words , learn from my mistakes and enjoy what you have right this minute. How will I listen to my own words? Who knows, but I'm not going to worry about it....

Chemo 12 -- A Milestone

I left bootcamp one cycle earlier so we could make it to G'town on time. We arrived at G'town 2 hours late. We were off to such a great start too. School was on an one hour delay, so we dropped HB off at Annette's to take the bus to school. Nate had woken up earlier than normal and was dressed and in a great mood. We hit the road with plenty of time. Stopped and got Scott an ice tea no ice and proceeded on our way to drop Nate off at AOL. We hit traffic and it took us almost an hour to get out of Ashburn. It is like 3-4 friggin miles! Unbelievable. By then, HOV was over, so we ran into traffic on 66E so it was not smooth sailing...

We arrived and didn't have to wait very long to see Dr M. We saw a fellow medical student first who evaluated Scott for this go around. Scott has been having headaches and Dr M thinks its from the Avastin. He gained a few lbs but all in all he looks pretty good. His neuropathy, while better, is not great yet and the fellow had said that could take years to return if it does. Great! Dr M went and checked his trial rules and decided to not give Scott Avastin this go-round to see if that is indeed what is causing the headaches. They also gave him a script for Percocet since Tylenol and Ibuprofen do not seem to help dissipate the pain. Scott's bp was 131/90 I believe. He also is very tired but as you have read, that is nothing new with his treatment.

Dr M mentioned that the first results of the Avastin trial administered to stage 3 colon cancer patients should be out in the June timeframe and depending on those, they may continue on their course or decided to discontinue Avastin.

Scott has a script to go get a CTscan and he is done with the Folfox after Thursday's return of the 46 hour chemo pack.

We got to Floor 7 later than normal and had to wait approx 2.5 hours for our chemo to start. On the bright side, Mercedes gave us a really nice room. Room 18 and it had a nice view of the National Cathedral. I went and got Scott some lunch and we both worked on our computers. Scott's friend John Divney was in town from Jersey, and he stopped by to hang with us until chemo was over. I know Scott was very happy to spend time with him. We had a lot of laughs. We didn't get home until after 7 and had to stop at Target to fill his scripts. I dropped Scott at home and then went to get the kids at Ellen's house. Ellen has been so kind to me. She is on call on chemo days to get the kids if we need her to. It's been such a huge help and relief to me.

So...the standard treatment for colon cancer --- FOLFOX -An abbreviation for a chemotherapy combination used to treat colorectal cancer that is advanced or has come back. It includes the drugs leucovorin calcium (folinic acid), fluorouracil, and oxaliplatin. --- is done! Moving forward, Scott will be going for chemo on Fridays and he will be getting only Avastin. He will not have to go home with a pump. It's a few hours at G'town once every 2 weeks until September at the latest!

Wheww!!

The kids are doing well. We are all so used to chemo week that it's 2nd nature now.I have noticed though that Nate has been getting upset when he asks Scott to play with him and Scott can't.It is what it is..but it still is hard to hear. I did go out last weekend and play soccer and football with Nate. We had fun but clearly I was out of my element and Nate had no problem letting me know that I wasn't playing right. Personally, I think he makes up new rules for the games to suit him. I took Nate sledding on Monday as well. Hannah didn't feel like going, so Nate and I bundled up and walked over to this hill in our neighborhood and took a few slides down. It was so fun but man, it was c o l d!!

Speaking of snow, I shoveled most of the snow but Scott for some reason, got a hankering to get out there and shovel a bit. I left him a part of the driveway to finish which he did but you could tell he was worn out the rest of the day. I am sure it's frustrating for him to not be able to do the things he used to do all the time.

One thing that I have been thinking about lately is how I am so proud of Scotty. This has been so tough on all of us but I stop and think about how this is for him. He is the one with cancer, the one with the chemicals being put into his body, the one that has to live with this thought that it could come back, the one that wants to do all of this stuff, but physically right now he can't. But with all that, he still keeps a positive, happy outlook. He gets down about it, but it really doesn't define him. He is still Scotty. He's just Scotty who happens to be dealing with this really shitty situation. He gets up and goes to work without a question on the non-chemo days. We have just worked this into our lives. It's not like we have a choice, but you do have a choice in how you deal with it. You can be all doom and gloom by this or you can just realize it is happening, it sucks beyond words, but life goes on. That's how Scotty is and I am so proud of him.