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.

Falling into a new "normal"

Well I haven't updated too much. There have been some changes but I felt like there wasn't too much to report. Eric had some tumors removed from his liver in early February. He got through the procedure with flying colors.

Skin breakdown and infections are still a major concern. He was diagnosed with another nasty staph a few weeks ago. As a result he had to go on a mega dose of antibiotics for 25 days. We are having such a hard time keeping ahead of the infections! It seems as soon as one is cleared a new, different, form of staph pops up. He has not gotten MRSA since the summer, but my concern is that every time he gets a new staph it is resistant to more and more drugs. Our fear is always MRSA, as he went septic from it years before his cancer dx, and is very prone to relapses. We also now continue to worry about c-diff from all the antibiotics he is constantly on.

The team has decided to continue with the same Xeloda dosage and frequency for now. 2500 mg 2 x per day biweekly. Although I question the effectiveness of the drug now that mets have continued to form, Kemeny seems confident that it is keeping most of the disease at bay. She says if the meds were not working, we would see much more progressive growth, not the mets popping up that we see now. As long as Eric is still up for surgery, that is the route that we will continue to take. He fears having to go back to systemic chemo (IV), and mentally is much better with the Xeloda. However, recently, we believe exasperated by the cold, Eric has experienced crippling joint pain. Some days he can barely walk. Watching him this weekend was horrible. Sunday he looked like an 80 year old man. It has always made him achy, but now it is really effecting him. We are going to talk to Kemeny on the 18th of March and discuss this. Maybe there is an anti-inflamatory they can give him.

PET and CT scans are on Thursday. Eric's mother is going to go up with him. We will get the results on Monday and find out if there is any new cancer growth since the last scans in Jan and the surgery in Feb. We also meet with Dr. Sophocleaus, the IR surgeon, for follow up.

Eric has also begun light therapy. What looks like a stand up tanning bed was delivered to our home and is set up in the bedroom. The hopes are that daily exposure will help with Eric's skin breakdown and infections. And heck, maybe I will get a nice even tan before bathing suit season :)

As always, your prayers and support and very much appreciated. The past few months have been so hard as I have watched so many of my friends say goodbye to their loved ones, namely husbands, to this horrible disease. I feel like it has taken over our entire lives. Much like history, we now have our own way to describe our history, BC and AD, Before Cancer, and After Diagnosis. Every day we learn something new about ourselves and each other. I am happy to say that finally we are able to really talk. Talk about fears, talk about future, talk about the unknowns and what is going on in the now. For those of you that know me personally, this is a huge thing that took 2 years to happen. A very long 2 years. I think we have finally evolved into a real couple fighting this disease together.

On a bright note Eric celebrated his "37th year on this Earth/19 Months Past The Expiration Date" with a nice little gathering at Maggies on Jan 27th. Thank you to all the friends that made it out that day to help him celebrate. I celebrated my 32nd birthday, and was so very grateful that Eric felt well enough to celebrate with me. We also celebrated the beginning of our 9th year together. Hard to believe we have been together that long. We were babies when we met. Its insane. And finally, thank God, Eric was feeling well enough to attend his son Mark's high school ring ceremony. I know that was a very special day for them both, and Eric could not be prouder of what a fine young man Mark is growing up to be. Especially considering his entire high school experience his father has been sick. Despite that, Mark has done so well. We are both very proud of him, and very grateful that his mother Amy has done a fine job raising him.

Well I guess that's all for now. I am sure I will update when we get the scan results. Keep up the prayers if you don't mind, they are clearly working, even if we don't always see it.

Peace and Love,
Jeaneane

Grumble grumble...(original post Jan15, 2013)

Well we did not get good news on the latest scans. There is disease in the liver that has continued to grow and now needs to be removed. The size doubled since the last scan right before Thanksgiving. Also found in the scan was areas of growth in both lungs.

The rest is inconclusive at this time.

 Feb and March are going to be particularly trying. Just sucks.

Not really much more I feel like saying.

glad christmas is over

This one was a tough one. Ever since we got the scan results before Thanksgiving I tried to have holiday cheer, mainly for the sake of my son, and partially for the sake of my own sanity. Even though previous Christmases have been cancer filled, this one just got to me more.

Eric really hadn't been out of bed much in over 2 weeks. All weekends were spent in bed...evenings from late afternoon on were spent in bed. The whole holiday was spent in bed. It was so sad. And he felt so horrible and worn.

I ended up delivering the presents to his son. Eric had wanted to do it but he was too worn. I called my mother in law to wish her a Merry Christmas. It was heartbreaking. Eric didn't even have the stamina to speak with her Christmas morning. He was able to open some gifts in bed Christmas morning. I made sure I snapped a shot of it, even though he got mad. I wanted a picture. I wanted something from this holiday.

Logan and I went to church together. It was so depressing looking around and seeing all the happy and HEALTHY families around us. Ok, maybe not everyone is healthy or happy, but they were well enough to make it to Christmas Mass with smiles on their faces rather then laying in bed in pain and exhausted. After communion, the whole church began singing "Silent Night". That's when I lost it. I started weeping silently in my pew and couldn't stop. People around me were staring and probably thinking I was insane. Luckily Logan didn't seem to notice. In a church full of people singing about the birth of our Lord, I had never felt more sad and alone. I prayed to God to help me, to give me strength. I prayed for strength for Eric. I didn't pray for him to be healthy. I know God already has his plan. Good or bad, I don't know, but he has already decided.  I just prayed for the strength to understand and accept his plan. I prayed for strength for Eric to continue to fight. Whether he is fighting for his cure, or fighting to stay with us as long as possible, I want him to continue to be whole. 

He never made it to Christmas Dinner. Thanks to some generous souls at The Breathing Room Foundation, I had a nice frozen meal I got ready for him. Logan and I went to my parents first for some gift giving then Aunt and Uncle's for dinner to spend time with the Conklins. I felt guilty for leaving him, but knew I needed to keep some sense of normalcy for my 12 year old. But overall, this Christmas was just rotten.

Well here is to a better 2013. Because 2012 was rotten too, and so was 2011, and the last part of 2010. 2 years and 3 months straight is a really long time to be fighting this horrible disease without any sort of break. That's a really long time to be sick every day. Hopefully 2013 gives Eric a break, and us a chance to reboot.

PET Scan and CT Scan first week in Jan. We find out the results Jan 14th. If cancer growth is reduced or stabilized we are happy. If cancer has grown or spread, then we reach our first official chemo fail, and 5FU and Xeloda will no longer be a treatment option. Remember there are only about 4 different drug options for Metastatic Colon Cancer, so a drug fail super sucks.

Thanks for all the prayers. We really need them.

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.

Say goodbye to Hollywood...say goodbye my baby

Movin' on is a chance you take 
Any time you try to stay - together 
Whoa
 Say a word out of line
 And you find that the friends you had 
Are gone forever
 Forever...

I really haven't blogged much this summer. Things, minus complications and infections, were fairly good. E and I had been great. I mean a few nasty cancer stemmed fights here and there, but never did I really question our strength for quit some time. I guess I can't count on that lasting forever. There have been so many ups and downs these past 2 years. So many people in and out of ours, but particularly my life. They really don't lie when they say you see who you can really count out during the rough times. Sadly the only person that I have found I can truly rely on is myself, and now I am starting to question that.

 I never said I was this amazingly perfect wife, mother, friend. I am far from it. I guess I was just able to put on my big girl panties and wade my family through the craziness of this cancer journey the past 2 years. But I am starting to fall apart. I fell myself losing grip on all that I love, and all that I fought hard to sustain. I find that I am becoming so sad, all the time. And I have no one to talk to. I guess a good chunk of blame needs to be put on me. I am too stubborn and bullheaded to get help, and I am a fierce momma bear when it comes to those I love. People have viewed me as crazy. Indeed a complete 302, because I would go to insane lengths to try and keep my family and my love in tact. I was insanely jealous of anyone E turned to instead of me. I think more then jealous, I was just so damn hurt. I mean shit, I am his wife, I am supposed to be his best friend, fuck I am the one taking care of him. But then he would share his fears and his hopes and dreams with others, and I was devastated. So I became nuts I guess. It didn't matter. In the end he didn't choose me. NEver had, never will. Everyone else always comes first. He never sees my pain. Even when I can no longer hide it, its like, "who the hell are you. Dont start your bullshit tears. You aren't the one that is sick."


 I am getting increasingly agitated with the boy, and he doesn't deserve my frustrations to be even remotely taken out on him. And I feel E and I pulling further and further apart. I am scared he is becoming the guy he was before, the guy who hated me. I feel like life is full of secrets again. Whether it is him not wanting to hurt me or whatever, I still feel like I live under a veil of secrets. Its a horrible way to live. Maybe I am just becoming paranoid. If I were to closely examine the 5 Stages of Grief, I would say I keep hoovering over acceptance and depression.I mean I have accepted from the beginning. I mean shit I married a cop. I knew there was always a chance he would never come home. I'm not stupid. I know what cancer does, how cancer can kill, but I also believe in miracles, and love, and strength. I thought that if I did all that, and so did E, nothing could stop us, nothing could take our love away, not even cancer. YEar ago, before we got married. E used to say it was him and I against the world. I don't really think that anymore. I honestly don't think he wants me to be his side kick anymore in this crazy journey. And if he does, he sure as shit has lost all understanding of how to show it. BEcause quite frankly, saying I love you, isn't showing it. And the only time he wants or needs me around is when he is sick, or has an appointment, or needs me to be his caregiver. I can do that, thats fine. I can be his caregiver if that is my role. I would never stop taking care of him, or loving him...even if he no longer loves me.

I guess no one will really understand this. I don't really think anyone could unless they live through it. quite frankly i dont even know why I am blogging about it, to complete strangers, but it did finally help the tears come. I had been holding them back for awhile now. Because, hell, who am i to be crying right? I am not the one who is sick! I will never understand what my husband goes through. But then again, he will never understand, respect, or even care about what I go through. Because I dont matter. IT's all about the person with cancer, not the rest of the family who is falling apart. And this is Stage 4 cancer, this isn't some joke. Maybe it should be all about him. But then again, I thought tragedy and heartache like this was supposed to bring you closer to the ones you love, no further away. But I guess in some respects he is growing closer to everyone else, just not the person who will stand by his side in good times and bad.

Guess it's time to just buck up and say goodbye to hollywood, and goodbye to my baby...because I dont think he is mine anymore anyway....