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.