Monday, December 22, 2008

Wowee Wow Wow!

Where do I begin. Today was an awesome day. I"ll try to stick to the facts.
We met with Dr. Chamberlain today to review the ct scan I had gotten done on Thursday. When he came in to meet with us he was visibly stunned. He said that he found it hard to find any viable tumor left. (the MRI does not show the calcification that would show up on a ct and the MRI is what he had to review last week.

He said now he is unsure as to whether to proceed with resection surgery or have SIRT (selective internal radiation therapy) done, while continuing to keep the option of resection open. This is the same question Moriarty and I have been mulling over for the past few months as I continue treatments.
The positive of doing SIRT as opposed to surgery is it will destroy any remaining unseen cancer. However it doesn't offer any possible chance at having a "you can be cured" prognosis. Resection surgery however does offer that possibility.
Surgery has its own negatives of course mainly increased morbidity and as with any surgery risk of not making it through etc.

So the bottom line is this. Dr. Chamberlain wants me to have another PET scan done. If there is any metabolic activity left we go to surgery. He would resect the right side of the liver and possibly a small area on the left. He said he feels very good about having a curative outcome.

If there is no metabolic activity then we will consider doing the SIRT spheres and continue along a path toward surgery. He ended by telling me with a big smile on his face, that being so young, and a mom of two young kids, having such a terrible cancer that I am the type of patient he lives to treat and give the possibility of a cure - at life.

He has impressed us very much so far in our two meetings and I don't think I could be any more blessed than having him and Dr. Moriarty on my team. He would be talking to Dr. Moriarty today and I will meet with Dr. M. myself on Friday before erbitux. Once I get pet scheduled I will meet up again with Dr. Chamberlain.

I am at a loss for words and have been all day. I feel like I have been giving the largest serving of hope poured into my soul since this all began. God has seen me through the horrible and now I am ready for Him to see me through the good. Joy, joy, joy that is all I feel.

God Bless all of you.


Monday, December 15, 2008

Surgery Consultation

Karen's doing well. After a long lead-up and much anticipation (on my part), we finally met with Dr Chamberlain from St Barnabas Hospital today.

We had a very good first meeting with fairly positive results. Before coming in he first spent some time reviewing Karen's scans. There was some confusion here but we worked it out. After reviewing Karen's history etc. the doctor laid out the situation on the back of a piece of paper.

Essentially he drew liver, life sized, with veins going in, veins coming out and various different sections. Then he drew in the tumors, a big one here, big one there, a small one there, a tiny one over there etc.

In order for a successful surgery, you need to keep a certain amount of veins going in, a certain amount coming out and a certain number of zones that add up to roughly 20% of the overall volume. So the challenge is how to do a surgery that'll achieve all those objectives.

The next step is to get a couple more pieces of data together. A series of special blood tests which K' did today before we left and a 64-slice CT scan w/contrast. This'll be a high-definition scan that'll allow Dr Chamberlain to reconstruct the liver in 3D on his computer. This'll let him develop a clear plan.

One possibility is a two stage surgery. First they'll go in and clean up the right-lobe. At the same time they'll tie-off the arteries into the left lobe. This'll cause the tumors over there to die and trigger the right lobe to grow. Then in surgery #2 they'll go in and cut out the left lobe entirely. Another possibility is that Karen would get a pump, about the size of a blackberry, placed into her liver which'd deliver chemo drugs right into the liver. I don't know about this piece but let's see.

It all sounded good and was delivered in very clear, easy to understand language without dumbing it down for us. Overall this was a great meeting and went just about as well as we could've hoped. Next step is to check with Moriarty to make sure he's comfortable.

Dr Chamberlain is not wasting any time. The scans will be "squeezed" in this week with no doubt some calls from Chamberlain/Moriarty and we'll meet back again in 1 week.

At that time we'll confirm if surgery is a possibility. Despite all the good news, it's still not confirmed.

I think Karen and I both are still processing the events of the day but slowly the stress is leaving me at least.

Please spare a thought for Adam Beldycki [LINK] who was undergoing his 5th liver surgery today.

Monday, December 8, 2008

Just stuff

Hello all. I just wanted to let everyone know what's going on...which isn't too much but at the same time a lot. I've kind of been procrastinating in terms of updating the blog, I think because I am sick of talking about myself (ha ha).

The MRI went well last week. And following in the footsteps of my friend Adam, took home a copy of the films (on CD) to do my own armchair diagnosis. Things seemed unremarkable (for someone who has tumors in their liver) to me and Dr. Moriarty's assistant Kathy called me to let me know that Dr. M. was happy with the scans and the report and in fact things are even a bit smaller.

This wed. Dec. 10th I will have another colonoscopy performed by Dr. Lipsky and on Dec. 15th we have an appt. to meet with Dr. Chamberlain.
So though it doesn't seem like too much is happening it is exciting to see if their will be a continuous flow of cancer death and maybe even another shot at a liver resection in the future.

I am very interested in what Dr. Chamberlain has to say. I have zero expectations set however and I am taking things one day at a time. I have been feeling fine relatively speaking and I continue on Erbitux every two weeks. I know erbitux is an awesome drug but I have to admit I am very sick of the side effects, but its working.

I can't say enough thanks or ever appropriatley express my gratitude to every one who is praying for us and supporting us and loving us. I am always very humbled by all the prayers people are saying and the time they take out to show their support in their own ways. I really am so, so thankful and grateful. God has been very merciful to me and my family and I know it's because of everyone's prayers. God's light really does shine through us all in the everyday things we do for others. God created us to be good and beautiful in all kinds of ways and if I ever doubted that before I never will again.

I am praying for all of us everyday.


Sunday, November 23, 2008

Some Updates

Hi everyone. There isn't too much to report which is good and why the blog has been slow. Dr. Moriarty spoke with his surgeon of choice who is Dr. Chamberlain out of st barnabas in nj. He as worked on many cases with him and feels very confident about his ablities as a surgeon.

Dr. Chamberlain requested a mri of my beautiful liver to look at it in greater detail. I have that scheduled for Dec. 2nd I will aslo be scheduling an appointment to meet with him hopefully in december also. But as Dr. Moriarty cautioned me "this is only a meeting."

What he means is we don't know if anything will come of it or if resection surgery is back on the table. But it is definatly time to meet with a surgeon especially considering how well things look on scan in conjunction with my low cea levels. It will be good to get some fresh eyes to look at everything review the case and give us his opinion. So I am looking forward to this.

Thank you everyone for you prayers and support.

Please take time to think of and pray for my friend Lee Dolan who past away two weeks ago from cancer. She was a very kind lady and a very kind friend to me. So if you could just say a quick prayer for her it would mean a lot to me.

And lets keep praying for each other eh???


Thursday, November 6, 2008

Moriarty back at his post

Karen's doing well. She met with Dr Moriarty today. Essentially Moriarty read the radiologist's report from Karen's latest PET/CT scan and her overall status is "stable". An amazing result considering where she started from.

It's definitely time to consult a surgeon again to see if surgery is an option and this time we're letting Dr. Dan drive that process for us. We will likely meet with him again in another few weeks. Until then Karen continues the regime of Erbitux as this seems to be keeping things in check.

It's always a stressful and overwhelming exercise whenever these scans come up and this time has been no different. We may not always be conscious of the stresses we're under but they are there nonetheless and no doubt will lift over the next few days.

Tuesday, November 4, 2008


Just a quick note to let ya'll know that I haven't yet met with Dr. Moriarty. He is still out. Hopefully he will be back in by the end of the week. I just want him to get well. I am told I am at the top of the scheduling list when his dr.'s give him the okay to come back to work.

Friday, October 31, 2008

Today's Meeting

Today we met with Dr. Morganstein. He reviewed the pet/ct scan report which he felt in a nutshell said that not much had changed. This is good news. No new tumors popped up anywhere and the metabolic activity surrounding the calcified tumors on my right hasn't dramatically changed either. We will meet with Dr. Moriarty on Monday afternoon to go into a deeper discussion of the report and what our next plan of action will be, surgery, ablation, sir spheres etc.

So for right now things continue to look good!

Thursday, October 30, 2008

Back from Vacay and Consultation Tomorrow

Karen's doing well. We were away in Disney and enjoying some time off, hence the lack of updates. Things are good however.

Karen had scans this week, Tuesday. A PET and CT scan. We reviewed the scans at home and it's hard to tell really what they mean. To the untrained eye they look pretty good.

Tomorrow we meet with a new oncologist, Doctor Morganstein as poor Doctor Moriarty fell ill whilst we were away!!! Poor guy works too hard. He's recovering well and should be back in action soon from what I'm told.

In other doctor news, we got a letter in the mail stating our surgeon, Dr. Ravikumar has left the area and will not be returning. He's a great surgeon and we're sorry to see him go.

So more news hopefully tomorrow when we review the scans. Meanwhile enjoy the pic.

Monday, September 22, 2008

Say What Now???

I just want to say in this situation I love sounding like a broken record. My CEA was taken again last thursday before my erbitux treatment. Kathy...wonderful Kathy called today to first remind me the normal range for people's CEA is 0-2.5. Oh.......mine just happens to be 2.5!! Say what, say what, say what now!!!!????? I am still stunned and absorbing this beautiful news. And I give every bit of greatness and glory to Jesus Christ almighty.

This cancer and stage that I have is as crappy as it gets. I am really lucky to be alive right now. Like a lot of my compadres that I have become friends with who are in the same situation I am we have all been told at some stage, that you know "you have some bad luck here." One doctor told me the best thing I could do was get my kids genetically tested. There's no point in much else.

So when I hear from Kathy what I heard today I just felt like I was in heaven on earth. Everything else is gravy. Last week (before this news) I was meeting with Dr. Moriarty and I was thanking him for continuing to believe in me and believing in doing everything for me. Of course he just shrugs it off like he doesn't do anything. My point is God kicks butt and miracles happen slow and through many forms but they are happening to me because God is good.

I am not glad I have cancer, but I am glad it is going away and I am very, very humbled by how incredible things are going and the continued support I continue to get in so many forms from so many people.

Thank you and lets keep praying for each other. We all need it.


Tuesday, September 9, 2008

More Good News

Well the summer is over but the excitement of life continues. I have been off of chemo (cpt-11) since july 11th. I am still on Erbitux (the rash stuff). I had my CEA levels done and got the call on monday. I don't usually fret over the number too much as long as they continue to go down but I was very apprehensive over this one. If my numbers went up significantly it was not only back to chemo but that also meant the tumors are more active. Well the ever lovely Kathy called and said it was 3.2! What a beautiful number. I was so stunned and so very happy. This means another whole month of freedom.

I continue to pray for everyone.


Monday, August 25, 2008

Summer Fun Continues

Karen's doing great. It feels like we are packing a lot into the summer and having a great time doing it. Last weekend we took the kids to a fairground for example and Ethan & Sydney enjoyed their first rollercoaster. As Ethan(2) said "my heart was going faster and faster". My own was not far off. We will write more about our adventures in future posts. Tonight I want to share a small way in which readers of this blog can help cancer research through Protein Folding.

What is protein folding?
Proteins are biology's workhorses -- its "nanomachines." Before proteins can carry out these important functions, they assemble themselves, or "fold." The process of protein folding, while critical and fundamental to virtually all of biology, in many ways remains a mystery.

How is folding linked to disease?
When proteins do not fold correctly (i.e. "misfold"), there can be serious consequences, including many well known diseases, such as Alzheimer's, Mad Cow (BSE), CJD, ALS, Huntington's, Parkinson's disease, and many Cancers and cancer-related syndromes.

If you'd like to learn more about Protein Folding visit Stanford University's page here:

How can I help?
Download the Folding at Home application from here:

This application runs in the background and downloads small packets of data from Stanford, performs some analysis on the data and then sends the results back to Stanford.

Will it slow my computer down?
No. The application runs entirely in the background on your PC's spare cycles, time the PC would otherwise be idle.

Ideally you could put it on every machine you have access to (office/work PCs are GREAT for this, especially if they're left on all night).

Do I have to register?
No. But you should put in the Team number for KarensCancer which is "144824". This will link your machine's work to Karen's team and we can track how much analysis has been completed as part of this effort.

Whilst this will not help Karen's case directly, the analysis may help researchers better understand what causes or contributes to cancer and other related diseases.

Sunday, August 10, 2008

Life is Sweet

Our Friday meeting with the wonderous Dr. Dan was great. I was ready to hear what he had to say, and take Don Macleod's words of wisdom to heart, "get the most you can out of your chemo."

Dr. Moriarty said that Dr. Ravikumar was really excited and happy with the most recent scans and really impressed. He couldn't believe how small things have gotten. Both Dr.'s are hoping that if the Oct/Nov PET scan comes back negative there will be no surgery involved. This is a good thing. I know Dr. Moriarty does not want to do surgery again if we can demolish this crap with chemo/erbitux and anything else that doesn't involve major surgery. Why? Because surgery too has its pitfalls and problems that comes along with it, and bottom line both he and Dr. Ravi agree it will not increase my chance for a cure/survival any more than other treatment options at this point.

As far as going back on chemo the plan is this. I will continue with Erbitux every two weeks for the next 3 months (erbitux is an anti-cancer drug not a chemo drug). We will watch my CEA level which Dr. Dan said has been very sensitive up until this point and we will watch that to determine wether to throw the cpt-11 (chemo) back in. Basically if it starts to go up a lot I am back on chemo and that is totally fine with me. I feel that I have regrouped and I am ready to "have at it" as it were if necessary. I am very lucky that my chemo is still effective and that my tumors have continued to respond this long.

In regards to the great news two weeks ago things have been amazing. I feel that I just walked away from a 20 car pile-up on the highway completely unscathed. I have experienced joy that I never felt before and a freedom from a constant underlying fear and panic that I have been dealing with for almost a year and a half. I am so very grateful to God. Miracles may not happen overnight but they do happen. Our prayers don't always seem to be answered the way we think they need to be but they are answered beyond our wildest dreams.

I said to Dr. Dan on Friday that when I came to see him in May of 07 "I was on death row right?" and he said "Karen, you were very, very sick. And I can honestly say without a shadow of a doubt, you are in the top 5 of all time best responders to treatment I have ever seen." I have chills right now relaying that. I said to him that that was great but also very scary.

Jesus said that all we need is the faith of a mustard seed to move mountains. I remember being a little girl and if I saw mountains I would say to myself "okay Jesus move that mountain." Of course that hasn't happened until now and its not because of my faith but of all you amazing, amazing, giving people who have been praying for me and asking others to pray for me and my family. It is because of your faith I am going to live to be old and full of wrinkles.

I cannot tell you how humbling it is and I continue to thank you all from the bottom of my heart and my family's. Please know I pray for you all as well. I know I continue to have a long road ahead but I have a road, and I get to walk on it with all those whom I love. Thank you God.

I will continue to meet with Dr. Dan every two weeks before I go have my erbitux as we watch and see how things go. You are all in my prayers and thank you just doesn't express how grateful I am that all of you and your love and prayers have gotten me so far. Jesus loves each of us and always hears us.


Wednesday, August 6, 2008

Surgery Review and More Chemo

Over the last week our surgeon (Ravikumar) has been reviewing the scans from the 28th July with our oncologist (Moriarty). Today we got a call from Ravikumar's office and spoke to the nurse there.

Essentially he's very happy with the progress and it is significant progress since January. On the down side he recommended 3 more months of chemo followed by a PET scan and another consultation. That will bring us to November.

Whilst it's great news of course that the scans are so good, I can't shake the pit in my stomach at the thoughts of 4 more rounds of chemo with no real knowledge of what lies at the end of it.

We're meeting with Moriarty in person on Friday to discuss in detail and hope to get clarification on what has been discussed. I have a lot of questions. We're going to ask for a 2nd surgical opinion from another doctor we've been researching.

Karen has been a trouper and amazingly strong throughout the day and once again I'm leaning on her instead of the other way around.

Thursday, July 31, 2008

CT Scan Results - Good News!!!

Karen's doing GREAT and so am I. After an emotional week we finally met with Moriarty this afternoon to review the latest CT Scans (taken this past Monday).

The news is good. Karen's tumors are smaller than they were in April and much smaller than they were in January. The largest tumor is currently 5.5 cm diameter, down from 10cms in Jan 2008.

These tumors were all ablated back in November 2007 and so we are seeing a lot of "calcification" as a result of that procedure. Calcification is exactly what it sounds like, the tumors build up deposits of calcium as a result of being necrotic (dead).

The radiologists' report revealed that the tumors do not "enhance" under contrast. My layman's understanding of this is that the stuff you drink when you're having a CT scan is absorbed by the tumors. This stuff shows up under the scan, making the tumors have higher contrast with surrounding tissue. Karen's didn't do that, therefore they didn't absorb the contrast fluid and hence this is another indication that they might be dead.

How dead they are we don't know. Moriarty said you'll never know they're fully dead but that's ok.

Lastly the scan showed that there is no NEW growth anywhere else. I'd call that a result.

The next step is to get these scans in the hands of our surgeon at LIJ. We burned some CDs and overnighted them this afternoon.

Moriarty and Ravikumar will review and confer this week and we'll have another consultation a week from tomorrow.

The last bit of good news is that Karen's new regime is for Erbitux only. No more CPT-11. Moriarty feels that this is what's having the most effect. The key is to figure out how to keep things where they are and keep improving K's situation. What a great job he and the team have done so far.

It's a lot to absorb, we're both mentally drained. Still taking it a day at a time and for today things couldn't have gone any better.

Monday, July 28, 2008

Scans and Waiting

Karen threw up this morning after the CT scan but other than that the scan was uneventful. It's probably a bad idea but she took home a CD with the images which we've poured over this evening.

It's hard to know what we're looking at so best not to draw too many conclusions.

We meet with Moriarty on Thursday assuming the radiologist writes up his report by then. The challenge is to keep distracted until then.

Sunday, July 20, 2008

The Highs and Lows of Summer

Hello everyone. Sorry for the lack of updates. The last month and a half have been as the title suggests busy, great and stinky. I guess I will start with the practicals. I had my 8th chemo of 2008 a week or so ago on the 11th of July. I will have a ct scan done on the 28th and we will meet Dr. Moriarty on the 31st to review everything. Dr. Moriarty told me that he is hoping after this next scan that we can reassess everything and hopefully have a new plan on the books. He is implying that hopefully there will be a break from chemo but of course we won't know that until we see what the scans find. I don't really know about the Erbitux. As nasty as the acne/rash/mustache stuff is, I really think it is having a significant impact on the tumors and if I have to stay on that, that's fine. It doesn't affect me the way chemo (which is the cpt-11) does.That's where things have been rough.

The last 3 chemo sessions or so, most significantly the last one, my body has had an increasingly difficult time recovering. This also impacts my mental state of course and I found myself really battling last week staying positive and not feeling agitated, extremely tense, and a bit down. So I am really hoping for a bit of a chemo break. Even if its for a month or two. I just want to regroup.

However the chemo/erbitux combo, along with the ablation I had in November has had a great effect on my tumors and I am very, very happy, blessed and grateful for the way things are going. Things are continuing to move forward and progressing in a positive way and my medical team (almost family at this point) continue to completely stay on the ball, and battle along with me. I have the chemo nurses taking the absolute best care of me and the times I do get upset during chemo, though I try to be discreet and not cry etc. they know me by now and always stop what they are doing and sit and talk to me.

Last friday during erbitux and hydration that I desperately needed, one of the nurses named Chris, out of nowhere asked me if I was hungry, went all the way down to the cafeteria and got me chicken soup and crackers....what!? I am sure she didn't get it for free and I am still stunned that she did this. I have been going there long enough to know that that doesn't happen as a common practice. I am very, very blessed.

Also on the even happier side when I do feel good I feel great. I have been having the summer of my dreams with my kids and husband during my time I feel great and I am just loving it. We have been having adventures at the beach and going to indoor play places, and just having fun in the sun in their kiddie pool in the back. It's really what life is made of, and you don't need to have cancer to figure that out.
My kids are so fun and amazing and innocent. We were on our way to the beach and I said "guess what guys, I packed bologna sandwiches for lunch!" They gasped in happiness and Ethan said "wow that's my favorite!" and Syd said "I just loooooove bologna!" I mean they were so happy about their sandwiches! I thought that was great. I think our next adventure will be to a water park, with a hotel stay, so that should be very fun.

Also happiest of happiness my very best friend of the last 20 years of my life, Nicole, just had her second beautiful daughter Sadie. Congratulations guys we are so happy for you and I am already in love, love, love.

Thank you so much everyone for your support that comes in all ways and forms and is always, always appreciated, and means the world to us. We will continue to keep you posted and pray for you all too.

With Much Love,

Tuesday, June 24, 2008

Lowest CEA level ever...

Karen's had a terrible time this chemo round but there is good news to share. Her CEA is down to 2.9, a record low. One of our nurses (Kathy) called especially to tell us.

When Karen was first diagnosed, her CEA was 628 [LINK]. It declined on 5FU + Avastin to roughly 40. After surgery and being off chemo for a while it had gone back up to 200+. Now it's practically normal. (normal range is 0-2.5). We'll TAKE it.

This is fantastic news and signs that all the hard work Karen has put in is paying off. I am sleepless due to the wrong timezone and figured I'd be productive and share.

Thanks to all those who've emailed and sent words of encouragement. It's hard to convey without going into gory details but chemo is brutal. Brutal is not the word. And we both want to just pack it in, but random emails of encouragement and good news like this help keep things on track.

Friday, June 20, 2008

3rd Chemo (of 4) & Camping

After a wonderful break camping in PA, Karen's back in chemo again. Today she had her 3rd treatment of CPT-11 since the last scans. As you may recall Karen gets CPT-11 every 3 weeks and Erbitux every week. She's having some "toxicity" to the Erbitux and so was given a break from that this week.

The CPT-11 is causing slurred speech and so the treatment was stretched to 5 hours instead of 3. Despite the slower IV, Karen got extremely nauseous and experienced some gagging and dry-heaving. Some heavy anti-nausea meds were added to the protocol and a big bag of fluids. All-in-all we got to the hospital at 9AM and left at 5:30PM.

As I mentioned we had a really great few days away with the kids. We chose to rent a cabin and didn't rough it too much. The trip included stroking a frog, waking a butterfly, feeding some goats, an underground cave, a trip to the Zoo, the Science museum, swimming, paddle boats and a beautiful sunset. The kids did great and it was terrific to spend the time with them and share in their fun.

I'm traveling on business this week from Tuesday which is not great timing. Karen will have her sister Sarah as company. As with all chemo weeks, we hope the week goes quickly.

Wednesday, June 4, 2008

Going Camping

Karen's doing better, still very nauseous after a typical chemo week (tough weekend then gradually come back to life through the week). We are playing a man-down this week as Sarah is in Florida. Sav if you're reading this we're doing ok!

We are going camping soon. Either next week or the following week. Not exactly "Into the Wild" but close.

In reference to the ASCO conference, not much came out of it other than some more data supporting the efficacy of Erbitux. Still, we'll take it.

Life is good.

Thursday, May 29, 2008

A Key Weekend for Cancer Patients

Karen's doing well. She'll undergo another round of chemo tomorrow so we're mentally preparing for the week ahead.

We've spent the last few weeks battling our insurance company. There are numerous issues but I have been protesting one particular charge (> $1000) since October 2007. Countless phone calls, numerous emails and two written letters later, there may be some movement on it. Until we get the money back I'm not holding my breath.

We actually have pretty good medical insurance (Lord knows we pay for it) but even with that, we consistently get charged for in-network services at the out of network rate. If you don't constantly monitor and run your own analysis it's easy to get over-charged.

Incidentally Karen's current total is up to $367,000 roughly. I only mention it in wonderment as I cannot imagine how hard cancer is on families without adequate coverage.

This weekend the American Society of Clinical Oncology (ASCO) will host their annual meeting (May 30th-June 3rd) in Chicago, Illinois. This is a key meeting as many drug companies, researchers and scientists will discuss their current research as well as unveil the results of the trials they've been executing.

I'll be watching the AP for potential news.

Friday, May 23, 2008

Conference Debrief: CyberKnife

Karen's doing well. We met with Dr. Moriarty this morning and he debriefed us on the conference that took place this week (Tuesday) at Overlook. He was rather serious but understandably so.

From what we could discern this is a coming-together of various experts and leaders in various disciplines, radiology, oncology, surgery etc.. The agenda is to review key patients' cases both in terms of knowledge sharing (how the patient is doing) as well as idea generation (where to go next).
Not that Dr Dan doesn't know what to do next but rather he wants to solicit input and guidance from a wide audience to get the best possible outcome for Karen.

Dr Dan told us the group was VERY impressed with her. The group reviewed ALL her scans, all the way back to April 2007, not just the last set. Without treatment this time last year, she'd no longer be with us. Thanks to the treatment plan and her determination we are in a much better situation. Her tumors have shrunken, some have died. Microscopic disease is likely still around and we'll continue on chemo for that. The next step is to decide what ELSE we can do.

There are a couple of options;
  • Surgery - to remove what she has left in the liver.
  • Radio Frequency Ablation - To burn what's left.
  • Embolization - to remove the tumors' blood supply and kill it.
  • SirSpheres - to Irradiate what's left with tiny tiny bits of stuff that carry radiation into the tumors.
  • CyberKnife treatment - This one we talked quite a bit on and I think it's where Dr Dan is leaning.
The CyberKnife system uses a particle accelerator combined with a real-time imaging system as well as "seeds" placed in the liver to directly target the hyper-metabolic activity (tumor) and kill it.

The procedure is painless and done on an out-patient basis. It's also extremely accurate with radiation being targeted to the sub-millimeter. As if that wasn't enough the entire procedure is done by robots!

There are a number of videos on YouTube that describe how it works. This is truly next-generation technology and YES our hospital (Overlook in Summit) has one.

Dr Dan is away to Africa for the next two weeks and we'll talk more about this when he gets back. Until then, chemo is the order of the day.

Saturday, May 17, 2008

Radiologist's Report

This'll be a quick post as I'm typing with one hand.

Karen's doing well. Had Erbitux yesterday and gets next week off. Her scans were read and revealed she's doing well. Some things did show up such as a suspected cyst on an ovary but this is nothing to worry about.

Doctor Dan heads to Mozambique soon to participate in "doctors without borders".

In other news I cut my thumb yesterday and so this week K's taking care of me! The doctor who stitched me up as it turns out has a niece with colon-cancer, diagnosed in '98 with liver and lung mets. After resection and ablation, she's been 6 years without a recurrence. This alone was worth the trip to the ER.

Friday, May 9, 2008

Happy Birthday Karen

Today's Karen's birthday! Happy day. Karen gets a double-whammy this year with Mother's Day falling on Sunday.

Let me start off: Sweetheart, I want to wish you the happiest of birthdays. You're an amazing person whom I'm so proud of.

I love you and Happy Birthday!

Unfortunately Karen's still not feeling 100% after last week's chemo. She visited the hospital on Wednesday and seems to have contracted a virus. Karen'll receive Erbitux this morning and hopefully some fluids to pep her up.

We should get the radiologist's report today also.

Friday, May 2, 2008

Consultation Update

Karen's on chemo again and all that that brings. Nausea, sickness, etc. Otherwise doing well.

A quick update is warranted; We met with Dr Moriarty today at Overlook. The idea was to review the scans that Karen had taken this Tuesday.

Unfortunately the radiologist has not read the scans as yet and hence no written report was available. However, Dr Dan did walk us through them in somewhat layman's terms. He showed us the scans taken back in February 2008, before this session of chemo was initiated. Those were not pretty and it was very hard to discern what was going on in Karen's liver. The right lobe was consumed with white fluffy stuff. The desired pattern is clear, uniform grey. Her left lobe also had a few small-ish spots on it, signifying tumors.

These last scans are markedly different. Her left lobe is fairly clear with the exception of two necrotic things where the tumors were. The right lobe is much clearer, with the exception
of what looks like a large crescent moon shape. This might be tumor cells or it might also be inflammation. It's surrounding a dark area the size of an orange, which is almost certainly a dead tumor.

Overall this is a great result, we'll still wait for radiologist confirmation of this early next week.

A week from Tuesday, members of Overlook from all disciplines will meet for a conference, during which Karen's case will be reviewed. Dan wants as many eyes on it as possible. There are still many options available to us and he wants to make sure we pick the right one. For now we're sticking to chemo.

We are bolstered by today's news and continue to believe Karen is getting the best treatment possible.

Monday, April 28, 2008

PET and CT Scans

Karen's doing well. After 3 months of CPT-11 chemo + Erbitux it's time for some scans. Her CEA is at a new low of 3.9 which is amazing. Tomorrow she'll undergo a CT and PET scans to detect for any activity.

We'll get the results at a consultation on Friday. Until then there's plenty to keep us distracted.

Wednesday, April 23, 2008

Waxed Mustache and Bald Head

Well I will keep this one short and sweet. My glorious, kind, loving friend Jill (who is also a hair stylist) shaved my head for me Monday night. It goes without saying it is not on anyone's top ten list of super-fun things to do, but it's done. It would have been a far worse experience if it wasn't for Jill, so Jill I thank you.
I also got my mustache waxed which made me so very happy!!! Thank you Jen and Sarah for being there for me.

Well that's it. I just wanted to let everyone know so if they see me they don't have to be like "oh I see you cut your hair." Sydney and Ethan see it as a different haircut that I got and Ethan told me he likes, and Sydney informs me she likes it with the scarf on. Gotta love it.

Lots of love to all,

Friday, April 18, 2008

Updates and Thoughts

Hello to all. Our most recent amazing news is that my CEA is down to 4.5! My heart was soaring when I was told and felt that beautiful emotion of hope. Thank you God.
I will be going for a pet/ct scan on the 29th. I feel very positive about these scans they will be a good checkpoint.

I had my most recent chemo last friday, and the week that follows is a difficult one for me both emotionally and physically. I am starting to feel better today, especially on the emotional side of things. I keep thinking of those words from Jesus, "who, by worrying can add a day to their life?" Much easier said than done but it is so true. Ever since I was diagnosed I look at the elderly and think "how did you get here, how did you make it to be old, I demand you tell me!"
But then it comes back to me that it is all out of our hands. And that is most likely a good thing.

It is a struggle at times to mentally blast through the negative. I told a nurse today at my erbitux infusion how I told Dr. Dan that I will be living well into my 80's or so, and she said (in a kind way) "hey never say never." I thought to myself these people are crazy! They think I am not gonna beat this!? It genuinely surprises me. They are not being cold but they know what they know and have seen what they have seen but I still say horse@!#*! But it is those kind of things that push you back sometimes and try to lure you to the dark side of your thoughts.

I also been thinking/dealing a lot with the superficial side effects of my meds. Since I have started the erbitux/cpt-11 combo I have been learning a lot about humility. My hair is definitely down the tubes (though I have been very fortunate to keep it this long). I will be shearing myself (well my friend Jill will be shaving it) probably in the next week or two and getting ready for a nice spring buzz cut. My skin is an acne-sandpaper disaster and God has decided to top it all off by giving me a nice mustache. Yes I said mustache. And I am not talking about the run of-the-mill female type of upper lip hair. I am talking about an italian-13-year-old boy type mustache deal (this is from the erbitux). I will be heading to the waxers soon. I mostly joke about these things and say they don't matter, but it still bothers me and obviously makes me a bit on the self-conscious side. I think to myself "you look hideous, you look terrible." Then I go out and people aren't running away screaming and I think, okay maybe I am not that scary.
When I am at Syd's school or at a party for one of her friends I do think "please don't judge me I'm a nice person!" When the parents are talking to me I am hardly listening because I am thinking "are they staring at my 'stache? Are they staring at my bald spots? Do they know I have cancer?" I am not going to lie, it's a hard lesson to learn. But I am learning from this that, yes, your exterior is your exterior, and doesn't reflect at all who you really are. I never realized that I struggled so much with this before but I obviously have. I know this sounds all very cliche, but it is my experience at the moment.

Thank you as always for your prayers and support, and I say to those who are struggling with whatever battle faces them to pray for courage.

I just want to also send out a delayed congrats to my sister Jen and her fiance Walter as they recently got engaged and are getting married this fall. We are very happy for you both.

I also want to thank my husband for his unconditional love and his tremendous strength. For listening to me and allllllllllll my many complaints, and for kissing me on the lips even though the stubble of my mustache scratches him. You are my hero, and I love you.

Much love,

Wednesday, April 9, 2008

A Year with Cancer

Karen's doing well. Next chemo is this Friday.

Has it really been a year? April's here, and so I suppose I should mark the occasion. Karen was diagnosed on April 07th of 2007 and if you're just joining us you can catch up here [LINK].

On the one hand I could say the year has flown by. On the other it seems like a million years. A full year with an 800lb gorilla in the room.

Sometimes I feel like this year was stolen from us. Yet on the other hand we've probably grown more in this year alone than in the many years prior.

We've also encountered so many kind people and been blessed in many ways. This was always the case but now we are more cognizant of these blessings. As a friend of mine would say "we are living on the edge" and things are very raw.

I've known Karen since 1995, we'll be 10 years married in October. She's an amazing person and I can honestly say I've never been more proud of her.

Wednesday, March 26, 2008

I'm An 11 Baby!

Just a quick update. I had my 3rd chemo treatment last friday and as usual felt like crap up until today but that's usual.

More importantly, I got a call Monday morning from one of the nurses Kathy from Dr. Moriarty's office. My cea level is an 11!!!!!!!!! That is an ELEVEN!!!!! God is so amazing.

I just want to digress from cancer talk for once (how refreshing).

I want to dedicate this great news to our dear Grandma Rose who past away last week. She has been in our lives for forever. Always remembering every birthday, anniversary, and was present for everyone's special times in life. She always took care of herself and she always looked great. She was a very thoughtful, loving human being. She will always be in our hearts. We love you Grandma Rose.

Much Love,

Thursday, March 20, 2008

Here's To An Enjoyable Easter!

Hello to all. I know I haven't posted in awhile but as Sydney tells her little brother sometimes (when he asks why) "because that's just the way it is."
Well I guess first the practicals. I am going for my 3rd chemo tomorrow along with good old erbitux, and then just one more (I think) until I can get my scan on. I have been feeling good the last two weeks, and just have this REALLY annoying severe dry skin but that is really it.

I just want to reiterate my thanks to everyone out there for their prayer and support and love. I cannot believe it is almost one year ago that all of this horrible stuff started. I can't speak for other people who have/had cancer but I don't think I will ever completely get over the shock. I still have days where I think maybe I'll wake up tomorrow and this will all be a dream. I sit in chemo and think and genuinely wonder "what the heck am I doing here?" There are days when all I want to do is sit in my bed feel sorry for myself, and cry my eyes out. And there are days when I actually feel great, and have this amazing energized feeling and I think "I don't have cancer, what a joke." That thought doesn't last long but I like to pretend for a bit.
Anyhow I generally feel/am pretty positive about the whole thing. I am a firm believer in mind over matter and of course I have all my eggs in the Jesus Christ basket. (yes that was very corny, so corny I just laughed at myself so I must leave it).

Thank you to everyone for all the meals, sending housekeepers, the babysitters, the chauffeurs, the emails, phone calls, cards, letters, and those to whom I subject to my complaining (yes I complain quite a bit). I am sorry for the generalizations but you all know who you are. I don't want to list people and leave anyone out. I love you all very much. I also want to thank everyone for understanding when I don't get back to messages right away, or phone calls, and when I don't attend things (and aren't asked why). I also want to thank all those who take the time to reach out to me when they themselves are going through their own cancer battles. It really touches me and gives me great strength.

I know they don't know about the blog but I also just want to mention that I am receiving and am so thankful for the amazing care I am getting from Dr. Moriarty and the staff there. I genuinely feel like I am their only patient.

I hope everyone has a great Easter and has lots of candy.

Much love,

Friday, March 14, 2008

6th Erbitux and The Circus

Karen's doing well. We awoke the other day to find this huge oak on down after some high winds. Amazingly hardly any damage done our neighbor's house.

Don't see that every day.

Karen's at Overlook today getting her 6th does of Erbitux. She's tolerating it despite severe dry skin on her hands and some bad skin cracking and rash etc..

Yesterday was a great day. I took the day off and Karen and I took Sydney and Ethan to the circus. I don't have many pics as they didn't allow flash photography. Here's a couple we snapped off before being scolded.

As it turns out I had actually worked with two of the clowns in the circus and knew them from a previous life. I hadn't seen them in about 14 years so it was quite surreal. The kids had a terrific time and loved every minute of it. I think by the time the show was over they were ready to pack of and join the troupe.

This coming Friday is Good Friday and Karen will be getting chemo + erbitux. On Sunday I am traveling to London for a brief business trip but will be back Wednesday night to help out.

It was a lot of fun to go out as a family and we are aiming to plan many more such outings over the summer.

Saturday, March 8, 2008

5th Erbitux Treatment

After another tough week, Karen's starting to feel better. She had chemo on the 28th and normally is feeling a little better by the following Sunday. This time the nausea, tiredness and crappy feelings hung around all week. She's been having massive cramping and gas among other problems. On the 6th she had her 5th Erbitux treatment. This has been tolerable but caused a huge rash and lots of related problems. The pain in her side was written off to just things settling down. Her liver function is normal and it is not enlarged by any means.

To cap things off, she ended up in hospital yesterday unexpectedly due to de-hydration. A few hours hooked to an IV solved that.

Surely all this indicates the drugs are working and we can expect great scans in another 8 weeks?

Since she's on CPT-11, her hair has given up the ghost and is falling out in determined fashion. I don't think even with her thick mane we can avoid shaving this time around, although Karen's full of surprises.

Despite paying our life insurance last Jan, they called this week and said we were late by over a month and that a LAPSE notice had been placed on our policy. What a bunch of balony! Of course our payments are well documented so they had to admit the inaccuracy.

In other financial related news, Karen has already met and exceeded our yearly out of pocket maximum yet our medical insurance continues to bill us. I need to call them.

You know what though? Life goes on, we are full of resolve, our marriage is as strong as ever, the kids are a tremendous joy to us and we're going to the circus as a family on Thursday. So screw cancer.

Wednesday, February 27, 2008

4th Erbitux, 2nd Chemo Treatment

Karen's been having sharp pain in the right side of her abdomen the last 24hours. This is similar she says to the pain experienced when she was first diagnosed. We are not sure but are hoping this is shrinkage or some other good effect of being back on chemo.

Tomorrow she'll go for the 2nd chemo treatment but 4th Erbitux treatment for those keeping track. This'll knock her out for a good few days but overall is still less of a burden than the original regime (another "easy for me to say").

We'll ask Doctor Dan what the pain means and perhaps he might have some suggestions although with only external exam it's very hard to be sure what's going on.

Friday, February 22, 2008

CEA Result

One of the nurses called today, completely out of the blue, with some amazing news: Karen's CEA is down from 237 to 65!!! This is great news and something we were not expecting. This type of impromptu call is also an example of the great care we are receiving at Overlook and how much the team there takes a personal interest in the patients.

Thursday, February 21, 2008

3rd Erbitux Treatment

Karen's doing well. She had her third Erbitux dose today. Dosage days are iffy but the largest side effect is a skin rash which is proving bothersome but tolerable. CPT-11 will be given next week (the 28th) which will knock Karen out for a few days. Other than that the regime is going ok (easy for me to say) and Karen's doing a great job coping with everything.

In happier news; Sydney turned 4 this week and we had a lot of family fun with her. Photos are available on Picasa for family and friends, email us if you'd like the link.

Monday, February 11, 2008

1st Erbitux + Chemo Session

I will update quickly tonight although truly not in the mood. Karen went back on chemo last Thursday (Feb 7th). Her new protocol is CPT-11 (chemo) every three weeks and Erbitux every week. This will continue for 12 weeks at which point a PET and CT scan will be repeated.

Erbitux is scheduled again on Thursday the 14th, (Valentine's Day).

Karen's baseline CEA from last Thursday is 230. Before surgery it was way down in double digits so this is quite a jump. However we must remind ourselves that she's been off chemo for some many months. Hopefully the next measurement will be lower.

Tuesday, February 5, 2008

Starting Over

The last week has literally been an incredible roller coaster of emotions. Karen had a CT scan last Monday (Jan 28th). Dr. Dan was away at the American Society for Clinical Oncology's 2008 Gastrointestinal Cancers Symposium all week so rather than wait for his consultation we decided to get a CD from the scan and look at it at home.

We have some experience looking at these things so this wasn't as crazy as it sounds. Unfortunately we were not prepared for what we saw. Karen's entire right lobe shows up engulfed in tumor. After thinking about it for a while we concluded this must be inflammation from her RFA burn in November.

The radiologist's report came through on Thursday and our nurse Nancy walked us through some of the salient points over the phone. Unfortunately this did not sound good at all. One of her tumors which was 5.6cm is now 10.5cms in diameter. The report made mention of increased growth, progressed disease and so on. So naturally we both lost it and have been struggling pretty much all week. I did not update the blog as I just couldn't bring myself to do it and besides, we didn't truly have things from the horse's mouth.

Today we met with Dr. Dan. He was firm and confident as ever and he walked us through the scan results. We learned a couple of things:
  1. The radiologist's report was given by taking the scan as a point in time and not in the context of Karen's RFA. Hence a lot of what is seen on there IS due to inflammation.
  2. Many of the larger tumors have a "classic" ring of calcification indicating necrotic tissue.
  3. RFA does tend to cause more inflammation and hence increased tumor size than other treatments.
  4. Karen does still have cancer and it's still growing in there so it's time to start chemo again.
He also laid out the new plan; Erbitux and CPT-11. Because she is still healing from the incision, she cannot start back on Avastin but rather than give things a chance to grow, Erbitux will be introduced.

Erbitux is a very new drug [LINK] which works similar to Avastin in that it blocks the tumor from binding to a certain protein it needs. The result is that the tumor shrinks and dies. It's insanely expensive and I need to check with our insurance in case we need pre-approval.

Karen will start chemo (CPT-11) on Thursday (7th). On this plan she'll receive chemo once every 3 weeks and Erbitux (which is technically not a chemo drug) every week. This'll continue for 12 weeks after which she'll have a PET and another CT scan. There are side effects which I'll cover in another post and probably a few other surprises in store but we'll deal.

Net-net we've had some very hard, very dark days this week but we are still kicking and remain confident that Karen is getting the best treatment possible.

Friday, January 25, 2008

Just an Update

Hello to all. Just a quick post to keep people "posted." ( I am soooo funny!) I am having a ct scan done on the 28th of January. I will review the results/report on the 5th of Feb. with Dr. Moriarty. Regardless of the results of the scan, I will be starting chemo the following week.
I have been feeling great and even started doing a bit of exercise again. I am ready to dive into some juicy chemo and shrink these suckers!
God bless.

Tuesday, January 15, 2008

look at me I'm blogging!

Happy 2008 to everybody. Sorry there has been such little blogging going on but things have been crazy ever since I went into surgery. I just wanted to write a bit about how much better I am doing. I was able to come off the wound vac almost 2 weeks ago and I think it is safe to say my incision wound is now healed completely. I am also feeling so much stronger and am getting my appetite back to full swing. It has felt great to do "crazy stuff" with my kids after dinner and just tickle, roughouse and in general go crazy. I have felt much much better these last two weeks.

We go to see Dr. Moriarty on the 21st of Jan. From that date we will be scheduling scans of some nature. Once the scans are done and the reports read and reviewed, Dr. Dan will have are our plan. I am most likely going right back into chemo which is fine. Whatev. eh? And that's all we really know at this point.

I want to continue to thank everyone who is praying for us. I continue to pray for all who are praying for me so we should all get our bases covered. But seriously, God is the supreme physician and He determines my fate. He is bigger than cancer. I have to diligently remind myself of those things all the time because the last few months have felt very bleak to me. But I just try to plow through all that negative crap and go froward. But all I have, we have, is God. I need Jesus on my side. Jesus didn't create disease or negativity. But he did create me, and as I learned in my 2nd grade CCD class "God don't make no junk." I think of that phrase all the time now and actually spurs me on. I won't stand for this and I know He won't either.

Thank you all for your support love and prayers. We deeply appreciate it.

Wednesday, January 2, 2008

New Year Post

Karen's doing well. A Happy New Year to all for 2008. We hope everyone had a peaceful and enjoyable Christmas holiday.

I have not posted in a while and it's time for an update; Karen's incision opened as I mentioned in a previous post, just about an inch or 1.5 inches, not bad for an 8" incision.

Chemo cannot start until the wound is closed. We are being visited every two days by a nurse and Karen is wearing a VAC or Vacuum Assisted Closure device. Essentially a pump about the size of 3 VHS tapes side-by-side. It is attached to the opening by a long line of tubing. The pump maintains a negative pressure on the wound by sucking every few mins. That stimulates blood flow and so on. It seems to be working despite the incredible inconvenience.

We got a short-notice appt tomorrow with Dr Moriarty to discuss who know what. There's not much he can say until the next round of scans and they have not been scheduled just yet. Another couple of weeks and we'll have a plan to move forward.

The waiting is not easy but we continue to receive strong support from all around us.