Glow-Worm

Hadn't updated in a while, but those of you that know us personally are aware of what is going on. However, for those who do not and follow this carepage, I felt I should update for you.

About 2 months back Eric got some bad news. A tumor at a critical junction point had grown to a significant size and wrapped around both a major plural artery and another vessel in the lower lobe of his left lung. Ablation was not an option as it was deemed too risky. The only other option we were left with was radiation, a treatment we have avoided this entire 2 1/2 year journey. He was to continue to stay on a chemo regiment to shrink the other numerous tumors in the lungs, but this particular one had to be attacked with radiation, or risk choking the artery. If the artery was completely cut off by the tumor... well I don't have to explain what that would lead to.

Radiation was the one treatment Eric had said he would never do because of his skin. We looked at that as a no go, but after consulting with Dr. Rimner in May, He decided to give the treatment a thumbs up. What Dr. Rimner proposed was 5 HIGH dose precise treatments to the tumor. These treatments would be over the course of a week and a half. One day on one day off. MSKCC has their own patented Radition Treatment comparable to the CyberKnife treatment at Penn that has been all over TV in this area. Only real difference is Sloan has had it longer.

Eric is now 2 cycles in and starting his 3rd tomorrow. We formally meet with Dr. Rimner the radiation oncologist, but on Friday Eric was informed that the radiation is working and the tumor is responding to treatment and shrinking. This is fantastic news.

Tomorrow Eric has radiation, an appointment with his lead oncologist Dr. Kemeny to discuss the other tumors in the lungs, and chemo. Tues we meet with Dr. Rimner, and Wednesday and Friday Radiation again.

Additionally, CEA has risen back up to 6.3 as of 6/3/13...not a good thing at all. :( Neuropathy has been causing insane amounts of pain. Hopefully he catches a break soon.

Keep those prayers coming...

Thanks!!!!

You take the Good, You take the Bad....

...you take them both and there you have 
The Facts of Life, the Facts of Life. 


So we got mixed news on Monday. Scans showed liver was clear, and that the ablations in Feb were successful. However, the scan also revealed that the Tumors in both lungs have gotten bigger. So Dr. Sophecleus, the IR surgeon, has begun scheduling lug ablations in late April, pending Kemeny's approval.

Kemeny is temporarily halting chemo, until we see a rheumatoid doc. Eric has been in crippling, and I mean crippling pain the last 3 weeks. To the point where he literally cannot get out of bed, and when he does he is moving like a 90 year old man. He said the pain in his muscles and joints was insane. He was using a heating pad on his back.

We thought maybe it was an issue with the Xeloda, but Kemeny does not think it would cause this incredible amount of pain. She believes it is actually his eczema. BEcause it is an autoimmune disorder, it can affect joints. His white blood cell count was also pretty high, at 21,000. He didn't have fever or any outward signs of infection, so she also believes it is inflammation related to the eczema (he also has 2 other autoimmune disorders-allergies and asthma). So she wants us to go to a specialist to get it treated...finding one is another story. She suggested we see a guy at Cornell, but I am just so tired of driving to NYC for all his docs. I wish I could find one down here at Penn or JEff, but the wait time is out of control. If anyone has any suggestions I would greatly appreciate it.

We do not want him off chemo for long, because we are finally seeing some decent drops in his CEA (tumor marker ) level. It went from 8.7 to 6.2 in a month. Last time his level was was as low as this was April of 2012, right after 2/3 of his liver was removed.  We need to keep the good stuff coming.

I got lazy...

Here are some back dated posts from Eric's carepage. I put them in chronological order. Then I will do an update today. I suck.

A chance to breathe...

Posted Sep 14, 2012 2:54pm

We finally got some good news this week. We got the results back from Eric's PET Scans, and they were clear, showing no disease present. This is incredible news, and I guess in some way a shock.
Eric is to continue on chemo for an indefinite amount of time. This is an offensive measure. From the beginning we were told that even when all tumors were removed, Eric would have approx 6 months of chemo to be sure they killed off all the disease.

The CEA level dropped from 10.2 to 8 in a month. We are hoping it continues to drop. The CEA marks the presence of disease. Once we start seeing numbers below 4 we know this is going well.
So I guess we begin the road to remission. Don't know if I would clinically say Eric is there yet, but it sure is a weight lifted off of his shoulders knowing that they do not see any disease.
However, since he will be continuing on chemo, he will still have the fatigue and million other side effects it causes. Fingers crossed this journey is almost over, even if just for a little while.
Thank you for your love, support, and prayers. As always, BELIEVE.

nervous as hell

Posted Nov 13, 2012 8:34pm

Tomorrow Eric goes for another round of PET and CT scans. I'm a wreck, so is he. The September ones were clear, so these results could be life changing. These results may be able to tell us whether or not Eric is finally ahead of this disease after 25.5 months of chasing it. If these scans are clear then he may be able to stop chemo. If he stops and his scans in 3 months stay clear then he begins remission.

But there is always a chance the scans wont be clear. Since he is on chemo and the last scans showed no presence of cancer, if these next ones do, then the chemo is considered a failure and we have to try something new. There are only about 5 types of chemo Eric can use successfully, we can't afford a failure, and quite frankly, he deserves a break.

So tonight I am saying my prayers and hoping the scans are good. We will not get the results until Monday, so its going to be a long 5 days and Eric is going to be a freaking basketcase. So any kind words you can send his way would be great. Help get his mind off things. And if the news isn't good in Monday, well we will fight on like we have since the beginning.

And as for me, ill keep it together and put on my brave face like I always do. Some day ill have my meltdown ...just can't have it yet ;-)

Silver Linings Playbook

Posted Dec 2, 2012 2:29pm

I feel like we are forever looking for the silver linings. Don' get me wrong, I am not complaining, but the ups and downs really start to take their toll.

As we are well immersed in our 3rd holiday season since Eric's diagnosis, all around me I can find things to be grateful for. Loving family, true friends, wonderful jobs and coworkers, and Eric being here to spend another holiday with us. We are lucky, many people don't get to live to see another Christmas, let alone 3, after a diagnosis like his. But the length of this battle is taking its toll physically, emotionally, spiritually, and any other "ly" you can think of.

I wasn't going to share this information, as I wasn't sure how much Eric wanted people to know. But we told our families, and Eric said it on facebook, so I figured I would let the other people who have supported him since day 1 know. The PET scan results we received right before Thanksgiving were not good. They weren't horrible, but they weren't good.

If you recall Eric's scans in September showed no disease, but to be offensive they kept him on chemo. It seemed that the last of the cancer that the docs had been chasing for 2 years was finally gone. Sadly, this November scan showed disease in the liver. New disease. Disease that grew while he was on chemo. Its a small amount, but it is there, and it is very disheartening. The liver had been cancer free for a year. This is a bad blow. Also CEA tumor marker went from 6.8 to 9 in a month, indicating cancer growth.

This stinks, and Eric was pretty upset (as I was), but he is taking it with stride now. They decided to keep him on the same dosage of the same chemo until the next PET scan in Jan. I think they are trying to get him through the holidays comfortably. This regimen has been , by far, the easiest for him in terms of side effects and mental toll. Kemeney already has a game plan I am sure. If there is more growth in the next scan he will prob be put back on the big guns, and life will really suck. The big stuff is terrible. It turns Eric into a real "sick person".

So this holiday season, please remember whats important. I know I am. Laugh a little more, smile a little wider, hug a little tighter, and say I love you to those who you do...you just never know what tomorrow will hold.
Peace & Love,
Jeaneane

Eric's Cancer Fight Countdown: 790 days of fighting and living since being told he was going to die.

When you try your best, but you don't succeed. When you get what you want, but not what you need...

When you feel so tired, but you can't sleep
Stuck in reverse

And the tears come streaming down your face
When you lose something you can't replace
When you love someone, but it goes to waste
Could it be worse?

Lights will guide you home
And ignite your bones
And I will try to fix you

And high up above or down below
When you're too in love to let it go
But if you never try you'll never know
Just what you're worth

Lights will guide you home
And ignite your bones
And I will try to fix you

Tears stream down on your face
When you lose something you cannot replace
Tears stream down on your face
And I...

Tears stream down on your face
I promise you I will learn from my mistakes
Tears stream down on your face
And I...

Lights will guide you home
And ignite your bones
And I will try to fix you

Chemo resumes today. Xeloda at a lower dosage then before to see if Eric gets toxicity again. He doesn't want to be on IV chemo, so we are hoping a lower dosage works. CEA level has increased from 9.8 a month ago to 10.2, despite the tumors in the lungs being removed. So clearly there is still cancer in his body. Pretty bummed.

We got into a fight the other day. He was yelling and screaming that he doesn't care anymore. So I gave it right back to him. I told him to give up then, stop fighting, stop letting so many people waste their time and energy supporting a person who doesn't care anymore. I got so mad and told him in frustration to stop all the treatments then, stop going to NY, stop taking up space and time someone who wants to live would be happy to get. I asked him why would he continue to have surgery after surgery and chemo and all the other nonsense if he didn't care anymore? his response-Because he felt like it. Then I called him out on it.  I told him that when you really don't care you stop saying anything at all. I forced him to hear me say that I know that he does care, and that he is scared to die. I told him anything you love is worth fighting for, and no matter how mad I made him (and boy did I make him mad), I was still going to fight for him, even if he wasn't going to fight for himself. I know he cares. But I know he is frustrated. The confirmation today of resuming chemo was just another blow. 

I'll keep pushing him. I swear to this. No matter how much he may hate me, I will push him. I WILL NOT let him give up. He has too much to fight for. He is tired and broken. But no matter what Eric, I promise,  I will try to fix you...

Past 2 months in 2 minutes

I haven't updated since May, mostly because not much had happened, then life became a clusterfuck. Eric went through 5 rounds of Xeloda before being hospitalized for chemo toxicity. Well that's what they think it was, because they really had no idea. We were stuck at Abington for 6 damn days. I was down the shore for the Fallen Heroes M/C Ride. Eric was supposed to participate, but felt so sick he went home. The next day my Dad took him to the ER, and I rushed home from North Wildwood. It was a long 6 days filled with fever, lost of some bodily functions and horrible blistering skin. And then 8 days later he was hospitalized again.

 The 2nd round of hospitalization this month was kind of weird. We went for a routine visit on monday and Eric felt fine. He had an abscess on his face that had started as a blind pimple. But if you know E personally, this is nothing new with his eczema and history of staph. But when the bloodwork came in the the numbers were not good. His WBC had jumped to 34,000 and Kemeny insisted he be admitted. He had brought Logan to this appointment with us, so needless to say we were not prepared for a stay in NY. Eric was pretty upset they admitted him, especially considering the fact that he had just gotten out of the hospital. Plus it was somewhat of a deja vu feeling, as Eric was hospitalized for 4 weeks right before the 4th of July.

Logan and I stayed at a hotel room that night, and my dad saved the day by coming up to NYC, meeting me on the train platform, and taking Logan home. During this stay Eric felt ok up until he was about to released, thus causing his stay to be extended. He ended up having a staph infection, a rare skull bone infection called mastoidosis (effects 0.004% of the population in developed nations)and ended up with c-diff. (if you look up c-diff it super sucks and is highly contagious). But we were able to get the meds for him to come home, where he will spend 4 weeks on antibiotics. Man can't catch a break.

CEA level had more then doubled in 2 weeks, which concerns me greatly. Eric is not on any chemo right now, and his surgery to remove the lung tumors has been pushed back twice because of infection. His numbers have not been this high since pre liver resection last year. If you scroll down below you can see the CEA level trends since he was diagnosed. Hoping that the reason behind this was the brewing infection, and not more disease growing elsewhere in the body. I do know that the neck/head/brain are good. He had multiple CTs of that area during his stay last week. We have an appointment in new york tomorrow, so I guess we will find out what the next plans look like. Surgery to remove the tumors from the one lung is scheduled for july 20th, with the following lung to be at a date after that. In the meantime we continue to pray. I will probably write more later, but I figure this is the quick update.

 These are pics of Eric when he was up at Sloan.

We passed the time talking about our Respite trip in January care of For Pete's Sake Cancer Respite Foundation

So take a deep breath, pick yourself up, start all over again

Now nothing's impossible, I've found for when my chin is on the ground,
I pick myself up, dust myself off, and start all over again.
Don't lose your confidence if you slip, be grateful for a pleasant trip,
And pick yourself up, dust off, start over again.
Work like a soul inspired until the battle of the day is won.
You may be sick and tired, but you be a man, my son.
Will you remember the famous men who have to fall to rise again,
So take a deep breath, pick yourself up, start all over again...

Ahhh, Old Blue Eyes....if only life were that simple. But there is some wisdom to that. And that is exactly what we are trying to do.

A day after we came back from out amazing respite thanks to FPS, Eric had to go to Sloan for a CT Scan, and to meet with his oncologist followed by treatment. It was a long day to say the least, and he was stuck up there himself.

Sadly eric was told by Dr. Kemeny that they found more tumors on the liver. I guess this was to be expected, considering the PET Scan glowed when he had his tumor removal surgery a few weeks back, but it is still tough to hear nonetheless. I was hoping that the rounds of chemo since the surgery would have made them nonexistent, but those suckers are fighting the chemo and not backing down. Luckily, Eric handled it ok, and even posted on facebook a status about how it looks like this beast (cancer) wants to go a few more rounds with him, but he's ready to keep fighting it. He said he won't give up. Its a beautiful thing to see despite getting pretty shitty news. I am so proud of him.

On the plus side his CEA level FINALLY went down to 6 after holding steady at 7.9 for over a month. In the words of Madea...


So we keep fighting on. Taking every day as a gift from God, being thankful for all that we do have, and continue to be blessed by crossing paths with special people during this journey. I have said this before, and I truly mean it, if it had not been for this experience, I don't think we would have learned what love means. Love isn't just a word or a feeling, it's an action too. And we have been shown love in so many places we may never have seen it. I have also learned a lot about life. Wisdom and beautiful secrets usually only those with many more years then I get to share. As much as cancer sucks, and boy does it suck, we are lucky. Without cancer, we would have never been so truly blessed and touched in so many ways. Much love and happiness to all who read this....(if anyone even does).

WTF??!!

That's basically the only words I have right now. Since the proper family members have been informed, I now felt it was ok to tell everyone else that Eric's cancer is back. Last month was the 1 year anniversary of his cancer diagnosis. He celebrated this milestone by getting a tattoo (if you know Eric you would understand why). He explains the symbolism of the tat as, "The worst day of my life, and the people who saved me."

Well now, a month later, and 7 months cancer free, they found tumor growth in his liver. Again I say, WTF?! This guy can't catch a break. He finally felt like his life was beginning to become normal again, and he gets rocked with this. But I am so proud of how well he is handling it, and how he continues to fight on. But I still think he and I are both warranted a little "WTF".

So the fight continues. It feels like deja vu in a way. The beginning of the school year, new school, new job, new friends in our lives. And then cancer comes and invades our world.

There are only a few requests I have right now, and they are sincere. 1.) Please continue to pray for Eric's health and strength. (And if you wouldn't mind a few extra prayers for the rest of his family that would be great too).

2.) We need our friends and family, and we need our lives to have the least amount of drama as possible. That means, I need to make amends. I am asking for forgiveness from some, and it would make Eric and mine, and our children's lives much easier if we can forgive and move on. Anger is a poison that does NOTHING to help fight.

3.) I need help. I can't do this alone again. Pride aside, I will take people up on offers to help. If your off on a Monday, and can take Eric to NY for an appointment, I need you. If you have kids that Logan could play with and wouldn't mind another kid hanging out, I need you. There are so many other things I could put, but the bottom line is that I need my family and friends to fight help Eric in his fight. Last year, mostly by choice, I did it all by myself. I nearly cracked. i wouldn't let anyone help me, it was a huge mistake. This year I will not do it. If you can help, let me know.



Eric is continuing to go to work. He even went in to teach the recruits with his fanny pack on. In that fanny pack was the chemo pumping into his port to keep him alive. Sure he felt like shit. Hell the day before he was told his cancer was back. But he went because he wanted to. Because he wants to still be Eric.

I am going to try to continue to work as much as possible. I want to save the time in case I really need it. Eric will be having upcoming surgery soon (or so it seems) to remove the tumor growth. I would need to take off for that, so any appointments, I am trying to see if people wouldn't mind taking him up to NYC. (I will provide the car/gas/tolls I just need peoples time). These appointments are Mondays. Eric says he can take himself if I can't go, but I would rather someone go with him, in case he has a negative reaction from the chemo.

Well I will summarize what's going on medically:
09/16/11- 6 months cancer free
10/4/11- 1 year anniversary of Stage IV diagnosis
10/31/11- 7 month CT Scan
11/7/11- Results of Scan
11/7/11- Hear the dreaded words, "We found cancer." CEA LEVEL: 7.1
11/7/11- Treatment begins at 6:30pm. Eric is given a different type of chemo, 5FU.


A little about 5FU: It's the oldest chemo there is for fighting colon cancer. Not that its any less effective. It runs for a period of 48 hours, hence the fanny pack. It's used to treats lots of other cancers too. It's a good drug, and has many less side effects then the drug combo Eric was on before. Eric was previously taking "the big guns". They dont want to use that combo again unless they need to. That was a 3 chemo cocktail of FUDR, oxaliplatin, and irinotican. A nasty strong combo. But the doc's feel they can give his the 5FU and shrink the tumor growth. If more tumors were to be found in different areas, then the big guns would come out.

Starting Chemo Again....
Rocking his killer fanny pack...