The day Xeloda finally failed....

Well we got really crappy news last Monday. Lung tumors doubled in size since the last scan 2 months ago. . So after 2 years 3 months of just xeloda, Eric will will be adding biweekly oxali infusions.

This is a major blow. His cancer is no longer controlled and managed.
Instead of folfox, he is sticking with xeloda and adding the oxali. Mostly because he hates being accessed for 3 days. But it's essentially the same thing. The KRas mutation obviously complicates things now. It really limits the amount of treatments he can get before his options run out. They were going to put him on the CPT11 and oxali combo but she has decided to hold that in reserve for when she really needs it. She also said lung surgery will happen soon, she is just waiting for a particular doc that is coming back to mskcc.

Eric is having a really really hard time with this treatment. I think being on xeloda, with all ts manageable side effects, spoiled him a little. Sure he got sick, but he clearly forgot just how ad the oxali is. He is sick. Very sick. barely eating, always sleeping when he gets the chance. E says it feels like he has been hit by a MAC Truck. Just a horrible constant nausea and weakness. And this was only the first round...it doesn't get any better. This is his off week, so hopefully he rebounds before treatment next monday. Pretty much this entire weekend was spent in bed with a bucket next to him. And the other horrible side effects of the oxali are the neuropathy in the hands and feet, and the inability to touch/tolerate cold. Even the slightest chill in a beverage feels like glass shards going down his throat. ITs going to make summer so much fun...insert sarcasm here.

We found a local oncologist out of Doylestown Hospital that we will be using for some of the infusion visits. Since they are biweekly now, going up to NYC every other Monday would just be ridiculous. We are moving to North Wales next month, and Doylestown will be super close. I have a family member that goes to this oncologist, Dr. Lorraine Dougherty, and I have heard very good things about her. Hopefully she is a good match.

I guess that's it. Nothing much more to say. The whole thing just stinks! Below is a pic from infusion last Monday, at least he is staying positive despite the tremendous disappointment.

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

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.

Keeping up with the Komplications

Eric started xeloda again 4 weeks ago. Last monday was the beginning of the 2nd round in this cycle. So far he seems to be doing ok with it. Today is his last day of chemp before his weeklong break. We had our 2nd appointment with the derm on monday, as his skin is still breaking down something awful. They are going to try another form of ointment which eric used awhile ago. They are also going to keep him on a constant low dose of antibiotic (doxycycline)to try to ward off infections, but we need to be leery of him getting c-diff again. His cultures have come up positive for Staph, and acinetobacter. So it is obvious the need for antibiotics is there, or he is going to end up in the hospital again. Then I get a phone call from derm on tuesday saying Eric tested positive for a different staph strain, but so far not showing as MRSA. But this staph is resistant to the doxycycline. So after a few days on that he had to stop, and use hibiclensse bath and an ointment until we meet with infectious disease in 2 weeks. Grrrrrr!!!

Dr. Locatoure, the derm, wanted to treat Eric with an additional chemo called Methotrexate solely for the purpose of trying to control the skin breakdown. Methotrexate is used for some forms of breast cancer and leukemia, but it can be used off label for chemical abortions and autoimmune disorder, like Eric's eczema. It can have adverse effects on the liver, which Eric only has 1/3 of. As a result, for right now, Oz (Dr. Kemeny), nixed it. In a way it sucks, because Methotrexate is really a great way to treat the skin breakdown but she does not want to interfere with the effectiveness of his chemo for the colon cancer mets. Its frustrating, but I am sure there is some wisdom to it.

Other than that we continue to take things one day at a time. There are bad days, and then some not so bad days. The good days are few and far between anymore. But every once in a while there are some good days thrown in there. The neuropathy is getting intense at times, as he is showing symptoms from chemos past. The worst thing is the trunk neuropathy, where several times, well honestly almost constantly, he feels like he is being stung by thousands of bees on his entire trunk region. We are hoping that as the skin recovers, this will go away as well. It is not a common side effect to any of the chemos that he is on, so they believe it is either a side effect of his his most recent surgeries (some sort of nerve damage), or the result of the trauma to his skin. We are obviously hoping this is temporary and not permanent, as it causes Eric a great deal of pain.

So far we have no other appointments until September. The first week in September Eric will have a PET scan and a CT scan. The following week he will review the results with the docs. By that point he will have had 2.5 rounds of xeloda in his system post surgery. We pray that there will be no signs of disease. Until then, as long as there are no changes, I probably won't have anything to update.

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...