Continued Healing

Karen's doing better. Her body is slowly detoxing from Morphine which is translated into more sleep. Still not a full night but any improvement is still an improvement.

Her wound had opened about an inch which led to a visit to Overlook's Wound Center yesterday. They patched her up and we'll return on Friday to see how it's doing.

She is moving around, still quite weak. Picking up the kids is still out of the question. Coughing or laughing sends searing pain into her side. It's going to take some time to heal up completely. I think the addition of some sleep makes everything easier to deal with.

Thanks once again to all for the good-will, kind thoughts and sincere prayers that continue to flow our way this holiday season.

Post Operative Recovery

Karen's having a very tough time. On Saturday night she cut back on the morphine as the pain from the surgery had become more manageable. Soon after going to bed she began having uncontrollable muscle spasms in her legs and body, apparently a withdrawal symptom from the narcotics. This didn't quit and the thrashing kept her up until 3AM.

The following day her incision began opening up and "weeping". This resulted in a trip to the emergency room at Overlook. What a difference from LIJ!! The incision is otherwise healing well and this opening is nothing to worry about. Unfortunately each night since then has resulted in more and more jitters and less and less sleep. Last night she was up until 6AM.

The kids are sick too at the moment which isn't helping either of us get any sleep.

With some care Karen's wound should close up soon. Her mobility is slowly returning, still not very steady but able to get around. Picking up Ethan is way way out of the question.

Today we met with Dr Moriarty at Overlook. He was a sight for sore eyes and despite the circumstances, it was re-assuring to be back meeting with him.

He and Dr Ravikumar have spoken and essentially he agrees with everything that was done during the surgery. Unfortunately the detection of additional tumors in Karen's left lobe alters her prognosis for the worse. This is something we already knew but Moriarty confirmed. These have been ablated now so essentially Karen is in a better position today than she was before surgery.

We will have another consultation with Moriarty in two weeks. After that Karen'll have a repeat CT Scan to see where things are (hopefully clean scans) and we'll decide on a plan to move forward. Some potential options are more/new chemo or SIR Spheres which I'll discuss in another post.

We wish everyone a joyous and peaceful Christmas season.

P.S. Happy birthday to our amazing son Ethan who turned 2yrs old last Friday, Dec 7th.

Home After Surgery

Karen's doing well. She came home late last night and is recuperating. The kids were visibly glad to see her and we spent a restful day at home today after what seems like the longest week of our lives.

Between one thing and another, running back and forth to the hospital and cajoling the kids back to sleep each night, I have had neither the time nor the inclination to update this blog but with Karen home it's time to give a little update.

Karen's stay in hospital was not without incident. The day after her surgery, her epidural stopped working. By the time I got to her room that morning she had already been an hour without pain medication and could barely speak. Another hour passed with me becoming more and more irate whilst the nurses frantically looked for an IV pump. I finally hit the right nerve (no pun intended) with the nurse manager and a pump was found. It took the rest of the day to get Karen's pain under control.

Mild fever, low blood counts, shallow breathing kept my nerves on edge.

There were a few other incidents which essentially all stemmed from in-experienced residents all waltzing into Karen's room, treating her like a science experiment without fully reading her chart.

I have to say we were very disappointed overall with the level of intelligence and care displayed by the nurses and residents at LIJ. Thank God for Dr Ravikumar who was diligent in his post-op follow up. He ended up over-riding or supplementing almost every instruction given for K's post-op care. I won't go into the details but it was Karen's determination that finally got her released last night.

An oral form of morphine is controlling her pain now and she's improving every day. We have scheduled a follow up with our oncologist, Dr. Moriarty, next week. The current plan which he'll likely confirm is to proceed with chemo for two months followed by hepatic artery infusion (chemo directly into K's liver) followed by more systemic chemo. A second surgery will be needed to remove the right lobe of the liver.

I will conclude with thanks to all for the loving support which somehow continues to flow into the Shanahan household.

Surgery Results

Yesterday was a difficult day. I only have a few minutes so will keep this brief. Karen's surgery did not go as expected. Additional tumors were found in her left lobe which meant the right could not be removed as planned. The surgeon burned all tumors but did not remove any of the liver. The surgeon believes the tumors in her right lobe may be resistant to the chemo. We will discuss options today, one of which may be a 2nd surgery in the future.

Karen developed a mild fever during surgery, her platlet count is low and she may need a transfusion in the coming days. Otherwise she is doing ok.

I know everyone is praying for us, thank you for that. Please keep up the prayers as we all really need them at this time.

Hurray For Surgery

Life is good. I have wanted to contribute to this blog for quite some time and now is a good time.

Well I am headed to surgery on the 26th and I am cautiously excited and just looking forward to the next few days with my family. I have been trying to get a lot of rest, and stay hydrated (one of my constant challenges) for my big day.

I cannot believe, and I am overwhelmed by how blessed I have been through this whole experience. God has sent to me the best medical people and treatments and I am so thankful for the response I have had to chemo. Yes, cancer/chemo is difficult and not fun but this is life and crappy things happen to people all the time. I really believe you have to extract the good out of all things and find out what it is you are supposed to learn in life whether it be good or bad. I know I am already healed. I know because so many amazing people are praying for us. I know Jesus always hears us and I may not always “feel” like He is there but I know He is. We don’t always have to feel things to know they are real. I have been saying in my mind since this whole thing started, I don’t believe in Jesus, I know in Jesus.

I want to thank everyone for their prayers, thoughts, emails, calls, gifts, etc. People who I don’t know, and have never met, have been kind enough to post comments, and send me emails and that blows me away. It truly does. People are good, and I am humbled.

My family has been awesome. Sarah, there are no words. But we couldn’t have gotten this far, this well without you. That is the truth. You have given up a lot, and we thank you for loving our kids and caring for them in the way you do. I love my brothers and sisters deeper than words can ever describe. You have all been awesome to me and supported me in such amazing ways.

I cannot even begin to speak of my husband because my love for him and gratitude cannot be expressed in words, and are too much to put on this blog.

Let’s all keep praying for each other and for great success on Monday and the weeks ahead. I love you all.

Karen.

Pre-Admission Testing

Karen's doing great. Over the last few weeks her color has returned and she's regained a lot of the strength lost to chemo. Today we had pre-admission testing at Long Island Jewish.

The pre-admission testing consisted of a chest X-Ray, CT Scan, blood work (including CEA) as well as an EKG. A huge amount of information was collected through interview along the way. Allergies and pre-existing problem type questions. We'll get Karen's CEA result on Friday.

We also met with Dr Ravikumar this morning before pre-test. That was a good visit. Dr Ravikumar explained the process he'll go through as well as the various decisions he'll make during surgery. These decisions are rather complicated but essentially result in Karen leaving the theatre with varying degrees of weight loss.

The surgery will last 5 hours approximately and starts at 11:30 EST on Monday morning.

He also may look to use a new technique he's developing (with a handful of other surgeons worldwide) that involves PET scanning with a wand DURING surgery. This allows him to detect a negative margin in Karen's liver more accurately. That's surgery talk for "figure out if there's cancer left or not".

It's an innovative procedure that doesn't add risk to the operation so we're signed up. It involves nuclear medicine though and may not be feasible logistically given the holiday here in the US. We'll see. Only a couple of people have received this process so there's no data to backup whether it actually is of benefit or not but it makes sense to me.

My parents have flown in from Ireland and are a great comfort and support during this time. Ethan loves his "DanGrad" and Sydney likes "Nana's white hair".

Karen's in "game mode" and although she's nervous, overwhelmed and a small bit scared she's up for the challenge. Her nerve is steady and we're quietly confident in what's to come.

We are looking forward to a successful result on Monday.

Cleared for Surgery on the 26th, November

Karen's doing well. She has recovered from last chemo and working on building up her strength for surgery. The surgery itself has been scheduled for the 23rd 26th of November, Friday the Monday after Thanksgiving. This doesn't leave much time and the few weeks we have are literally flying by.

We had a consultation with Dr Moriarty last week. He had reviewed the results from Karen's colonoscopy biopsy and was very up beat. The colonoscopy on visual inspection revealed that Karen's primary tumor had disappeared. The biopsy results revealed even better news; that the cancer is not detectable at the cellular level in her colon. We asked if this was good, he said "yes, VERY good". In Dr Dan's words "she has had a 'complete response' to the chemo".

Surgery's job will be to remove the remaining tumors in her liver.

Dr Dan gave us the following tidbit; The percentage of people who's tumors disappear from chemo is small. Maybe less than 10%. Of those people, the percentage of who's tumors are no longer detectable through biopsy is less than 5%. So like I always knew; Karen is very special.

When Dr Moriarty started in 1985, the percentage of people who were chemo resistant was about 95%. Only about 5% of folks actually responded to chemo. These days, with Avastin and other drugs, things have improved substantially. These developments are so new (Avastin is only on the market since 2003-4) that the statistics have yet to be adjusted to reflect these improvements.

On the insurance front; after many phone calls and back and forth with the insurance company and our surgeon it has been determined that Dr Ravikumar is out of network. This would ordinarily leave us footing a 5 to 6 digit bill. By some miracle, Dr Ravikumar has agreed to accept the out-of-network payment offered by the insurance company and waive the remainder. God is sending us the help we need.

Between now and the surgery date Karen has a number of pre-admission tests to do, including various scans, X-Rays, blood tests, MRIs and so on. We also have to squeeze in some Christmas shopping. This year my list will be short, but I know exactly what I want.

Before we left we asked how Dr Dan felt about the surgery. He said "I'm excited".

We are too.

11th Chemo - Pump Removed

Karen's doing well. Today as always the chemo pump was removed thus completing the eleventh dose. This was the last administration of chemo between now and the surgery and we're looking forward to the next four weeks of Karen regaining her strength.

Even before she went to the hospital today, one of the nurses from the oncology department made a point of calling the house this morning to inform us that her CEA has once again gone down. The present value is 52 (down from 72 last time) so that's tremendous and we're needless to say relieved at this news.

I continue to work on the insurance issues but have every confidence that'll get resolved. I will post more details of the surgery as we get closer to the date.

I will sign off now with thanks once again to all who've helped us out both mentally and physically as it makes a world of difference.

11th Chemo Session

Karen's doing well, peacefully sleeping off the effects of her eleventh chemo. Between one thing and another I am a day late in my updates. Thanks to Cynthia who paid a surprise visit from Dallas on Saturday. It was great to see her and as always Cyn was a big help with the kids.

Things are firming up now. Karen's surgery is set for the 23rd of November, the day after Thanksgiving. We have a number of appointments, screens, tests, scans and consultations leading up to that. Not to mention the minor detail of how to pay for it still hanging out there. These are all tactical items and very manageable.

Shaken but not stirred: We have recovered after last week's ups and downs are moving ahead with a positive and determined attitude. It bears mentioning once again that Dr. Dan is a tremendously caring individual and we are very grateful for all the efforts he has put in thus far.

Since last week a number of folks have written notes, lit candles, sent mass cards, said prayers, held masses and so on. This is tremendously encouraging. It reminds us that we are not alone in this journey and we are very grateful.

Some very encouraging news came today in the form of the biopsy results from Karen's last colonoscopy. Dr Lipsky took numerous biopsies from inside Karen's colon in the area where the primary tumor had been. After analysis in the lab, these tissues have all come back negative for cancer which is great news.

This is just additional tangible progress and we're chalking it up as one more in the win-column. If there was a sequence of events by which a patient would make a full recovery than surely Karen is on that path.

Consultation

We are back to earth with a thump. Yesterday we met with Dr. Dan our oncologist to review where things stood. He was pleased with the news from the colonoscopy but did not over react. I asked him with the surgery, if the cancer was removed and did not come back could that be considered cured. Unfortunately neither Karen nor I were ready for his response.

Dr Dan reminded us that Karen's disease is incurable. There is a chance it will not come back after surgery but it is very small. She may have "no evidence of disease" but will not be considered cured until going 5 years without a recurrence. She may have a recurrence and chemo may keep it in check but ultimately the cancer will grow resistant to chemo.

Dan's words were "Karen will most likely die from this disease". He shared that when K walked in to his office in April he did not expect her to be alive by now. That she has reached the point with surgery as an option is tremendous. The goal is to turn it into a chronic condition that will be treated over many years.

He was simply doing his job and in as caring a way possible but this is just tough to hear. We walked out shell shocked and I took the rest of the day off work to be with my family.

Today we have regrouped. We are focused on
a) non-recurrence. We have heard many stories of non-recurrence with stage IV.
b) That recurrences if they happen will be burned through RFA or kept in check by chemo.
c) that in the next few years new drugs will be approved that will provide a cure.

Perhaps I am in denial but everything in me just "feels" like Karen will not have a recurrence. I am obviously not in a good position to be objective but I cannot picture an alternative and I am usually good at envisioning potential outcomes from a given situation.

Is this where human strength gives up and faith takes over?

Karen goes again for chemo #11 on Monday.

2nd Colonoscopy Results

Karen's recovering from her colonoscopy today. This is Karen's 2nd colonoscopy and was performed once again by Doctor Lipsky. Sarah babysat so I was able to take K to the surgery center myself. Thanks Sav.

Dr. Lipksy is a gastro specialist and was one of the first doctors we met with when Karen was first diagnosed. The procedure took a while but once completed I was able to review the results with the doctor whilst Karen came-to in recovery.

The results were terrific. Karen's colon is in great shape. Lipsky was visibly excited and I could tell the news was good before he called me in. The primary tumor which was about the size of a golf ball before the summer has disappeared! Gone. Expired. In his words "this was the best possible outcome".

When the first colonoscopy was performed, the area of the tumor was marked with a special dye which doesn't "wash off". That dye helped Lipsky determine this time around where the tumor should have been. Of course only a small amount of dye remained today and the tumor is no more. This type of result is rare and means the chemo has been highly highly effective.

The lack of polyps in Karen's colon may indicate that she is genetically predisposed to getting cancer. This will be further investigated over the coming months and the appropriate action taken. Lipsky also took lots of biopsies of the area where the tumor was for further analysis.

Karen still needs a colon resection but it may be smaller piece taken out now. She also still needs liver surgery and a bunch of other things so no change there.

We are making progress but we are not done yet! Karen has done an amazing job and displayed incredible heart and endurance to get this far. I am so proud of her. That hard work is being rewarded.

We remain confident that this is the best approach to treating Karen's cancer.

Good News with a Bombshell

Karen's doing well. Really the title of this post should be "potential" good news with a "potential" bombshell.

The good news is we have a tentative date of November 26th for surgery at LIJ. We are "penciled" in for that day. This is further out than we had hoped but we'll take it. My parents have rescheduled their flights to better coincide with the surgery.

The bad news or potential bad news came this evening when I called our insurance company. Long story short it came to light that whilst LIJ hospital is in network, Doctor Ravikumar is not.

This news came despite me checking and double-checking BEFORE our first consultation. After a few phone calls our insurance company located the record of when I spoke to them on August 27th and luckily it contains documentation of the call where I was explicitly told that both LIJ AND Doctor Ravi are IN network. So this proves they screwed up.

Thoughts of switching Doctors at this point are not really an option. We're out of runway and committed to this team. The situation has been escalated to a supervisor and we will hear in a few days whether they're going to cover it. Trust me I will be all over this one.

Obviously the money is not the issue here, we will find it somewhere. Cancer is stressful enough on a family. Despite all precautions on our part, can nothing in this ordeal be simple?

Karen has her 2nd colonoscopy tomorrow to check the status of her primary tumor. Tonight she must drink a full four litres of let's just call it "fluid".

Scheduling Surgery

Karen's doing well. She called Moriarty's office today to touch base. Since her last visit Dr. Moriarty has conferred with a couple other Drs in K's team. Everything is as it should be and so today he gave her the go-ahead to schedule 1 more consultation with Dr Ravikumar as well as schedule the actual surgery at LIJ.

Hopefully we'll get a concrete date for surgery tomorrow. This does bring with it some jitters but it's another step forward and I know we can handle it.

10th Chemo - Pump Removed

Karen's sleeping soundly since about 7:45pm this evening. She ate some cheerios at 7pm and felt like passing out so had to go to bed abruptly. This of course left Sydney and Ethan in a bit of a state but they settled down eventually.

Today the pump was removed. Karen's counts were low last week so tomorrow she'll jab herself with Neulasta to begin building up her white blood cells (WBC).

Dr Moriarty met with Karen and told her that he has spoken to Dr Ravikumar (our surgeon) and given him all the latest results and scans. Dr Ravi is willing to do surgery and optimistic about the results. In his own words "you are young and I am experienced. Together that's a good combination". We don't have a concrete date as yet but expect surgery to happen some time in November.

Today was our nine year wedding anniversary. We will celebrate in earnest when K's feeling better. For now I am content to have spent the night watching TV beside her whilst she sleeps off the chemo.

This time next year we plan to be checked into a horribly expensive hotel somewhere around the 23rd South parallel.

10th Chemo Session

Karen is doing well. She's sleeping soundly whilst hooked up to her chemo pump for the 10th time. Last week chemo was canceled in favour of giving Karen some time to recuperate. Karen's CEA was down to 72 as of last Monday, Sept 24th. No blood was taken today and so we'll wait until next time for a new CEA.

The next session will be in three weeks on October 22nd.

The 10th chemo in the 10th month! I can't believe it has been 10 treatments and over 20 weeks since we started "life with cancer". Chemo's cumulative effect is exacting a heavy toll on K's body. This has been a summer filled with many chaotic highs and lows and one we will not soon forget.

With everything going on I am long overdue in thanking people. Sarah who has been with us literally since the first visit to the emergency room took Karen to chemo today. Thanks Sarah, we'd be lost without you. Also to Karen's Mom who looked after her grandchildren today (and likely tomorrow also). Thank you. To Kate and Chris who took the kids out Saturday allowing us both to get some rest. Many thanks.

Lastly, it may not seem like much but the notes, emails, phone calls and so on from family and strangers alike really do help keep Karen going. Although we are 10 treatments in we are not out of the woods yet.

I understand folks don't know what to do and perhaps imagine we'd rather be left alone but it is always welcomed whenever we do get a call or email. So thanks to all for that.

Surgery Update and No Chemo

Karen's been sick the last two weeks with the exception of yesterday. These weeks have been some of the hardest yet and Karen hasn't been able to do much of anything. At some point I should write down what chemo is actually like as I don't think folks really understand. I know I didn't.

She was scheduled for chemo #10 today but upon examination, Dr. Moriarty decided to give her a break. She's doing well today and grateful for the rest.

There is also talk of switching her from chemo every two weeks to chemo every three weeks, just until surgery. This will help regain her strength. This is not definite but let's see.

We met with Dr. Ravi last Friday. He was pleasant and confident. He spoke quickly and to the point. Overall we were pleased with the encounter.

Dr. Ravi would perform at a minimum a removal of the right lobe of Karen's liver. That brings with it the gall bladder. The colon surgery may or may not be done at the same time.

Unfortunately he did not commit to a surgery date citing the CEA level as being too high and one of her tumors being too close to an artery. It appeared though that he had not had time to review the latest round of test results.

Moriarty promised to call him and review Karen's case again to determine a more definite course of action. I hope they figure it out as it was very tough to leave Ravikumar's office without a date.

Karen's last chemo on September 11th was the last time she received Avastin. She has to be off this for at least 6 weeks before it's safe to undergoe surgery. Ravi prefers to wait 8 weeks just to be safe. He has a zero-mortality rate so I guess it pays to be cautious. That puts us sometime in November at the earliest.

The next chemo session will be next Monday.

Surgical Consultation: Prep

Karen's had a tough week battling nausea. The CPT-11 has a character all it's own. Ordinarily chemo is tough but about 8 days after treatment Karen will begin to feel better. That hasn't happened for her this week and I'm hoping it settles down for her soon.

For some time now we have been working towards surgery. Of course it's of paramount importance to find the right surgeon and facility for the job. The default response when someone mentions cancer in New York is "Sloan Kettering Memorial". The main reason (we feel) that you'd want to go somewhere like Sloan is to participate in the wide selection of clinical trials that they are running. Fortunately Karen is not at the point where clinical trials (read experimental treatment) are being considered.

Dr Moriarty recommends focusing on the individual performing the procedure more than the facility in which it'll be performed. Through a sequence of referrals from family friends we have found Dr Thanjavur Ravikumar [LINK] of North Shore LIJ [LINK].

Dr Ravi is the chairman of the department of surgery at LIJ and specializes in hepatic surgery as well as "complicated oncologic surgery".

Although we arrived at Dr Ravi independently of Dr Moriarty, it turns out they have worked together in the past. In fact Dr Moriarty's face lit up when we mentioned him which is certainly a good sign.

This hospital is not the largest in the tristate area however it comes with an excellent reputation for patient care .

North Shore LIJ was voted "Number one hospital in America" by AARP Modern Maturity magazine, the largest circulation magazine in the United States. Whatever doubts you might have, to be voted number one hospital in America is no joke.

The following article highlights the liver surgery capabilities available through LIJ [LINK].

We will be meeting with Dr Ravi on Friday morning and have as always, high hopes.

9th Chemo - Pump Removed

Karen's sleeping off the effects of her ninth chemo session. Despite all the good news this has been a difficult few days but she's hanging in there. It's not easy raising a 3 year old and a toddler whilst every cell in your body is being attacked by poison. Add to that the fog of medication, nausea and side effects along with life's "standard" set of problems like constant medical bills, lost keys, a cracked windshield, leaky pipe etc. etc. Ok, enough complaining.

Today the pump was removed and K got an updated CEA reading; Last time the CEA had dropped from 156 to 140. This time the CEA is...92!!! That's right, double digits. This is yet another good sign and I'm really delighted with the news.

You have to hang on to every little bit of good news and keep focused and that's just what we're doing. Thanks to all who've sent notes of encouragement. They really really do help and we're very grateful for the support.

9th Chemo Session & Scan Results

Karen is currently undergoing her ninth chemo session and all associated side effects. Yesterday we got the results of the PET/CT/MRI scans and I got a copy of the radiologist's report. This scan was compared to Karen's scan from June 1st.

Here are a few snippets from the report:

"Previously a large area of hypermetabolic activity was identified in the liver. This is decreased in size and density. The SUV values is approximately 6. The finding is considered to represent improved metastatic focus. The CT images identified calcification of this abnormality indicating dystrophic calcifications from a treated neoplastic process. The previous examination also identified small focus of activity within the left lobe which is no longer present."

This is translated as "Karen had a lot of big tumors in her liver that have decreased in size and density. The CT scan detected stuff (dystrophic calcifications) you'd expect to see if tissue was dying (neoplastic process). The tumors in her left lobe are no longer there".

"The examination now identified abnormal increased activity throughout the bones of the skeletal system. The SUV values approximately 8. Findings most likely related to a rebound effect from chemotherapy but should be correlated with history physical examination to exclude the remote possibility of diffuse neoplastic disease involving entire bone marrow. "


This either means her entire bone marrow is shot or it's a to-be-expected effect of the chemo. We are assured it's the latter.

"The activity identified within the adnexa of the pelvis previously is no longer present."

In the previous scan they had seen suspicious shadows around K's ovaries. This seems to have cleared up.

"Impression significant improvement identified. Hypermetabolic focus still noted within the liver. The lesion has decreased in size and intensity. It is in the right lobe of the liver."

Essentially Karen's tumors have shrunken but are still there. To paraphrase Dr. Dan "they aren't ice cubes that'll melt away completely".

This is GREAT, GREAT news and when we actually got to see the scans it was obvious the excellent progress Karen has made. This progress is due in large part to the chemotherapy and Dr. Dan but ultimately it has only been possible through Karen's will and determination.

The general consensus of the tumor board and associated oncologists on our team is that it's time to identify and consult with a surgeon specializing in metastatic disease and liver resection. He or she will determine the correct surgical options and we'll go from there.

I think Karen and I are a little hesitant to celebrate just yet but this is terrific news on the whole.

I have a feeling there will be a lot of "hurry up and wait" but that overall things are going to move very fast in the next few months. We remain confident that this is the best approach to treating Karen's disease.

Magnetic Resonance Imaging

Karen's doing well although slightly apprehensive. She had an MRI today. Combined with the PET and CT Scans from last week the MRI will form a complete picture of Karen's cancer. We meet with our oncologist tomorrow to review the results.

Karen will also have chemo tomorrow for the 9th time.

PET and CT Scans

Karen will undergoe another round of scans tomorrow to determine the status of her tumors. She's scheduled for a PET scan along with a full torso CT Scan.

These will be followed by an MRI next week. We will get the results of all three scans next week and are very hopeful that surgery will be scheduled soon thereafter.

I am trying hard to distract myself and spent the night painting the living room.

8th Chemo - Pump Removed

Karen's doing well but very tired. All normal. The pump was removed today for the 8th time. We learned her CEA has dropped down slightly to 140 again. This is good news and no doubt the effect of the CPT-11.

We are still working through identifying a surgeon but are zero-ing in on one of the best, if not the best liver surgeons in the country. Not in Sloan Kettering by the way. CT and PET scans have been scheduled for the 5th of September with an MRI the following week. It's going to be a busy few weeks.

8th Chemo Session

Karen's currently undergoing her 8th chemo treatment (the 4th "round"). The pump was hooked up yesterday whilst Sarah looked after the kids (thanks Sarah). Karen was able to sleep some of today whilst Sarah and mom took the kids out for the day (thanks guys). Karen will return to hospital tomorrow to have the pump removed.

Karen's still on CPT-11 and it's still kicking her butt. The nurses and Dr Moriarty were all surprised to hear how rough CPT-11 had been on her the last time. It's due no doubt in part to Karen's petite size and also that this is her 8th treatment.

This week I got a number of emails from folks who're either cancer patients or caregivers, some of whom are having a hard time with the chemo side effects. In the interests of sharing information with folks I've gone through Karen's drug-bucket and listed the various medications she's on besides the chemo. Many of these are substitutes with the alternative in paretheses.

• Fluconazole (Diflucan)
• Lorazepam (Ativan)
• Naproxen
• Temazepam
• Docusate Sodium
• Amoxicillin
• Prochlorper
• Dexamethason
• Compazine

These are basically anti-nausea for the most part. Hopefully this gives you something to talk to your doctor about.

Congratulations Jacqui and Declan Dunleavy

Today my friend Declan Dunleavy will marry Jacqui in Baden Baden, Germany. I've known Declan since I was 13 back in Donnycarney. Karen's known him as long as she's known me. He's a loveable sort but for many years he was a bad influence on me. Still, can't fault him for that.

Before Karen's diagnosis we had planned on attending this monumentous event but tonight we will be there in spirit.

http://jacquianddeclan.com/

Seventh Chemo - Pump Removed

Karen's sleeping peacefully but the last few days have been tough. As I mentioned last time, her chemo was changed to include Camptosar (aka CPT-11) and this has really been hard on Karen's system.

K spent much of Monday, Tuesday and today sleeping, on average 18 hours per day. This has meant limited time with the kids which is frustrating for her but more importantly limited time eating and drinking. The pump was removed today as usual but this time the nurses saw fit to give her a bag of fluids along with an exam from the Dr Lowenthal (a member of Moriarty's group).

Lowenthal gave K a complete exam and reviewed her chart. We were worried for a moment that she might be admitted. He commented that she has been making great progress, despite the extremely debilitating side effects. He also remarked that the doses of drugs she's on are pretty high. This is not the first time we've heard this and it explains why she's hit so hard each time.

We believe that given Karen's age and overall strength that the doctors are prescribing the most aggressive treatment possible and are confident that this is the best approach to treat her disease.

Seventh Chemo Treatment

Karen's doing well. I always like to start off the posts with that statement. That's the most important nugget in the whole post.

Today Karen had her seventh chemo treatment. Nicole went with her (thx Nick) and I stayed home with the kids. We had a VERY eventful day between work, play and a visit from the plumber. That's another story.

Karen's day was also pretty busy. As usual she met with Dr Moriarty for an exam. The chemo regime was modified today to replace Oxaliplatin with a drug called CPT-11, also known as Camptosar. It's not commonplace in the USA yet but new studies in Europe have demonstrated the effectiveness of switching up the chemo regime with this drug before surgery. Karen had an allergic reaction to Oxali last time which was another reason to switch. Gotta love Dr Dan for staying on top of things.

Karen also got the prescription for her next round of scans. These will be performed 10 days after the 8th chemo session and include CT-scans of the abdomen, chest and pelvis as well as a PET scan. Personally I'm excited for these as they'll be the make or break as far as whether surgery is approved.

Tonight she's feeling shakey but in good spirits, as am I.

Congratulations Baby Conor

Today my sister's new son, my nephew, Conor, was baptised. Karen and I would've been there to celebrate were it not for the current situation. Despite not being able to attend the baptism this year, we are in fact Conor's Godparents! Godparents in-absentia, for now. This time next year we expect to be home in Ireland celebrating again.

Sixth Chemo - Pump Removed

Karen's exhausted today, primarily from chemo. Generally when she's tired it's either from chemo or from the drugs she takes to ease chemo, all of which make you drowsy. Today it's from chemo alone.

She had her pump removed and as always we got a CEA reading. Unfortunately the CEA has stayed roughly the same as last time. I spoke to the nurses and they assured me that this is still not a bad thing. There will be disappointments along the way with cancer and this is just one of them. The fact that it's dropped so much since we started is still a good thing.

I've also had conversations with our insurance as Sloan Kettering (our preferred location for surgery) is out of network for us. They've initiated the process of obtaining a case-worker to be dedicated to our case and will see what comes of it.

We will know more after round seven but for now I'm gritting my teeth and adopting the McCloud motto: Hold Fast!

NY Times Article & Calling All Survivors

President Bush had a colonoscopy last week and 5 polyps were removed. [LINK]. For those playing along at home a polyp in your colon is how cancer starts. Most polyps remain benign but cancer ALWAYS starts from a polyp so as a precaution they are removed every time they're found. The tissue can then be analysed and tested. Cancerous polyps are Colon Cancer Stage I in laymans terms.

This past Sunday the NY Times had huge article on cancer in the US entitled "Cancer Patients, Lost in a Maze of Uneven Care". This is a big article that follows mainly the story of a new-mother, Karen Pasqualetto, 35 years old. Days after giving birth she was diagnosed with stage IV colon cancer with mets to her liver, the same disease as my Karen. I won't bore you with the details but basically she's doing ok now, managing recurrences as a long-term (chronic) illness.

The story talks a lot about the level of care which patients are receiving, most of it being sub-par. Some patients are dismissed with palliative care options (read "we'll treat you until you die") or denied surgery, or approved and then denied upon further review. Some patients miss the surgery window when their tumors are smallest purely due to scheduling conflicts. Others don't receive the correct or full regime of chemo drugs. Others see only a local oncologist with little to no experience in the exact cancer you're facing. Others are not covered by insurance. Others have insurance which doesn't include the best doctors in their location. Others miss entry to clinical trials based on availability or lack of awareness. The list goes on and on. For an elderly person (most colon cancer occcurs above 50) the myriad of things to follow up on can lead to missed opportunities which ultimately can be deadly.

Even though we are confident, 100% confident in fact, that we are receiving the best care available, we continue to research the disease and treatment options as much as we can.

If you are a cancer survivor or know someone who is, it would be very useful to get annecdotal references to surgeons specializing in Colon Cancer and Liver Resection within the tri-state area (or beyond). You can contact us using the following link [LINK].

Sixth Chemo Treatment

Karen is exhausted and pale as a ghost but doing well. She had her sixth chemo treatment today. Karen likes to get there early, 9AM usually and today the chemo took all day, until around 3PM. She had an allergic reaction to Oxaliplatin (a drug she's been taking all along) and began breaking out in a rash. The nurses administered Benadryl which seems to be the antidote for most allergic reactions (including Compazine).

To combat this next time, the Oxaliplatin will be administered EXTRA slow which will likely take an extra 2hours. Not a huge deal but it does place extra strain on the kids as well as whomever's mind them, not to mention Karen herself.

Today we learned that Karen will not be stopping chemo before surgery, rather they will just stop the Avastin as part of the regime. Avastin inhibits forming new blood cells and it's important to get it out of your system before surgery, otherwise you won't heal.

We also got the names of some surgeons from Dr. Moriarty which we need to go and research, one's at St Barnabas and the other's at Sloan Kettering Memorial. We know next to nothing about either of these places but perhaps someone reading this will know a friend of a friend who's been to one of these places and will write us [LINK]?

Cynthia is coming to visit tomorrow so roll on Wednesday when the pump gets disconnected.

The Cost of Cancer

Karen is doing well, incredibly tired but doing well. She is resting and should be able to get some much needed sleep tomorrow. She has started taking Echinacea and Pomegranate suppliments to aid overall health and build up her immune system. She already takes Omega 3, 6 Fish Oils aswell as Flax Seed, B12 and a multi-vitamin.

When Karen was initially diagnosed we made it a priority that she should receive the absolute best care available regardless of cost.

Medical bills have been trickling in and so tonight I took a look at our insurance claims. So far the amount which has been invoiced for all procedures Karen's received totals $99,738. There's no typo, almost one hundred thousand dollars.

We are going to an in-network team of doctors and hence the actual cost is lower than this due to pre-negotiated rates that our insurance company has set with the doctors. Our insurance company has paid out roughly $44,500, almost forty five thousand dollars.

Keep in mind we have not reached surgery yet.

Bottom line: Cancer treatment is incredibly expensive.

I cannot imagine going through cancer without medical insurance. Thankfully we have insurance, it's expensive but we have it. There are plenty of families that do not. When you're sick the last thing you need to worry about is the cost of treatment.

If you haven't done so recently, I encourage everyone to take a peek at the fine print of your medical coverage. Do you have an out of pocket maximum? Does your insurance have a maximum lifetime benefit? Most plans do and cancer patients can easily exceed the limit. Of course here's hoping you never need it.

I remain confident that we are getting the best treatment available to treat Karen's disease.

5th Chemo - Pump Removed

Not much to report tonight. Karen's doing well although extremely tired. As such she's gone to bed early tonight.

The pump was removed today, completing the 5th episode of chemo. As always we got a CEA reading and once again it is down. If you recall last time, CEA was 221, this time it's 145. I'm tracking it in a notebook so to-date the progression has been...

• 628 to start
• 511 after 1 chemo
• 356 after 2
  
• 221 after 3 and now
• 145 after 4

We're hoping to get down to double digits next time.

5th Chemo Session

Karen's doing well. We're back to reality today with another bout of chemo. Dave took her to Overlook today (thanks Dave) and she's home with pump at the moment. Karen's blood counts are good so no Neulasta this time around so we're hoping for a good week.

I have a lot of folks to thank tonight. First and foremost huge thanks goes out to Dori Howe & the Howe family who loaned us their beautiful beach house in Long Beach Island this past weekend. Karen and I had a wonderful and restful few days there. It's no exaggeration when I say this is a gorgeous house in a one of a kind location as close to the beach as you can get. Karen got some much needed rest and relaxation whilst I jogged around the island. We even did some star gazing from the rooftop deck. We are both so grateful to have been able to avail of it and will not soon forget our time there. Thanks guys.

We couldn't have gotten away were it not for the hard work of Sarah (thanks sis), Chris & Kate who looked after the kids whilst we were gone. The kids had a great time and it's always nice to know they are in safe hands.

Tumor Fever

Karen's doing well. She still has a fever on and off of about 99.5F with bouts of feeling crappy but it is manageable. I was worried Karen had developed a "super bug" of some kind which wasn't responding to the antibiotics. Indeed Karen herself was feeling very discouraged.

However, Dr Moriarty called her in for a consultation this evening and gave her an exam. The blood work from the weekend came back clear, meaning no infection. They are repeating that to confirm the result.

He also relayed that the entire team had reviewed her case this morning and everyone is pleased with the results (the shrinkage). What Moriarty suspects is Karen has a "Tumor Fever". This is not uncommon and is caused when the tumors "become necrotic" (die). You end up with dead tissue in your liver & colon which can cause inflammation and God knows what.

Naproxin (an anti-inflammatory) has been added to the treasure chest of drugs at the Shanahan household.

So after a worrying few days, we are taking this fever as a good thing. We continue to be impressed by the attentiveness, expertise and level of care provided by Dr. Moriarty and the team at Overlook.

Home Again

Karen came home today. She still has a slight temperature, 99.5F but is doing well and will be heading off to bed soon.

On the positive side, Karen had a wonderfully spirited roommate in Overlook who also has cancer. She had a lot of good advice delivered in a colourful manner and was a breath of fresh air to meet.

The oncology team meets tomorrow (as they do every week) to review Karen's case and will likely punt on chemo for this week.

Snakes and Ladders

After such a good day yesterday, unfortunately Karen is in hospital tonight. She was running a fever this morning and at lunchtime I urged her to call the doctor. Her temperature was over 101F and they asked her to come in. Any amount of fever is dangerous when you're on chemo as the immune system is just so weak.

Once at the hospital she was hooked up to an IV to begin fluids. I thought she'd "get a bag" and be sent home. Unfortunately they decided to admit her, at least for tonight, possibly tomorrow night as well.

Last weekend she developed a throat infection which meant she was already taking antibiotics. Dr Moriarty wants her on a stronger brand of antibiotic which will be given via IV. The fear is that her port may be infected which would be bad news. We don't think this is the case but blood work will hopefully reveal the truth by tomorrow.

This was a difficult blow as we were looking forward to a great weekend before chemo again on Monday. We'll also miss Becky's wedding tomorrow. At least she'll get some rest but I miss her, as do the kids.

Checkpoint Consultation

This morning we met with Dr Moriarty to review Karen's progress and the news is good. All indicators are pointing to chemo-sensitive tumors. We reviewed the CT scans taken last Monday as well as the PET scan.

It's not an exact science but Karen's tumors have shrunken roughly 30% since diagnosis. There are still several large tumors in the right lobe of her liver. One tumor was initially 10cm by 7cm and is now roughly 7cm by 4cm. There are a couple more like that in the right lobe. There is one small tumor (about 1.4cm) in the left lobe. Also, many of the tiny-tumors (smaller than 1cm) have disappeared. If it's working on visible tumors, it's also working on non-visible.

The PET scan had cast some doubt on her ovaries that potentially they may be cancerous also. Dr Moriarty assured us that he does not believe this is the case.

This is terrific news and puts us on a course for surgery.

Karen has completed 2 rounds of chemo. A "round" is actually 2 sessions, 4 weeks long.

The plan is to continue for 2 more rounds at which point Karen will be evaluated for surgery. Dr Moriarty is going to find us the best surgeon that specializes in liver-resection due to colon cancer. We are confident that we will get the help we need.

As a side note, I guess I'm run-down as I got some bug and was throwing up all morning and twice in the car on the way there. I looked so bad that nurse Nancy actually gave ME anti-nausea medication!!! In a weird way I got a small taste of what K goes through every two weeks.

Checkpoint CT Scan

Karen's doing well. The time off from Neulasta is a blessing. 4 Chemos have been completed and yesterday Karen had a CT scan to check progress. Thanks to Dave for driving.

Whilst at the hospital she stopped by oncology and got a quick IV of fluids as she was dehydrated. Her throat developed an infection over the weekend and some antibiotics are working to clear that up.

We were supposed to get the results of the scan today but that got rescheduled to first-thing Thursday morning.

It's hard to believe 2 months have passed since chemotherapy was started. I would hardly say it has flown by but by the same token I don't remember much of it. I have no concept of time any more. Each day is blending into the next. I narrowly avoided a business trip to Brazil this week which would have put some additional strain on us. Tomorrow the US celebrates their independence from the British which doesn't really apply to me but for once I think I might just join in.

Enjoy the holiday everyone!

4th Chemo - Pump Removed

I meant to post yesterday but between one thing and another I am steadily falling behind in my duties. Karen had the chemo pump removed yesterday and is doing well. Actually surprisingly well, considering how the week started.

As always we got a CEA reading yesterday and once again it is down. If you recall last time, CEA was 356, this time it's 221. I'm tracking it in a notebook so to-date the progression has been...

• 628 to start
• 511 after 1 chemo
• 356 after 2 and now
• 221 after 3.

Again, this is great news and we're hopeful there's a linear correlation between the CEA and the tumors.

A CT scan is scheduled for Monday and consultation Tuesday. Anytime Karen has a CT scan she has to drink a special fluid in preparation. It tastes pretty dreadful and there's a lot of it. As for the results of the scan, we're not really sure what to expect. There's a chance Dr Dan will recommend surgery, in which case we'll go into a hyper-drive of preparation that includes figuring out an actual surgeon as well as go off chemo for a month or so.

There's also a chance Dr Dan will recommend continuation of chemo, based on the shrinkage thus far. I'm not sure what I'm hoping for.

For now we're just getting ready to enjoy the weekend.

4th Chemo Session

Kate took Karen for her 4th chemo session today, thanks Kate. It was thankfully uneventful by all accounts. Doctor Dan met with Karen as usual and is pleased with the progress. I was able to conference in via speaker phone. Karen's been having lots of pain from Neulasta and he talked about trying Neupogen without me bringing it up. Karen's blood counts are doing well so Dr Dan cancelled the Neulasta shot for this week.

Since this is the 4th session, Dr. Dan has wasted no time and has setup a CT scan for next Monday. In his words, he's "curious" as to the results of the scan.

Lastly, in great news, my sister Teresa gave birth to a new baby boy back home in Ireland this morning after wait for it...7 minutes of labour. Amazing. Congratulations guys and welcome Conor Loughnane. Sydney is excited to meet her new cousin.

Getting Back on Track

It's been a few days since the last post and thankfully not much to report. I think I spoke too soon last time as Syd's fever returned. We've had a lot of sick kids, cranky kids, a lot of waking up in the middle of the night and all that goes with that. Thankfully we are getting back on track.

Karen has been suffering from the usual bone pain from the Neulasta shot. It's supposed to last 24hrs but in her case it seems to last 3-4 days. Percocet seems to do the trick but K uses it sparingly due to the fog it brings. I have done some research and come across a drug called Nupogen which may be easier on her. I'm going to ask Dr Dan.

As of tonight Karen's doing much better and as she put it "I assume I'll feel ok tomorrow".

Next Monday will see the fourth round of chemo and we schedule a CT scan soon after that to measure progress. Logistics for chemo weeks are really important to ensure K can rest as much as possible and that the kids are looked after. I think we still have a few holes in the schedule for next week but hopefully we can figure that out before Monday.

Although it's not going to be for a few weeks, I am already looking forward to the CT scan and have high hopes for an excellent result.

One more thing tonight: Don, if you're out there, can you email me? I'd like to know how you made out on the 5th and how recovery is going.

Running on Fumes

A quick update: Karen caught some kind of bug Friday that caused a severe sore throat. We took a trip into the Oncology center where they did a quick blood test. Sure enough her white-blood cells were sky high indicating she was fighting off something. The bug has since righted itself over the weekend and K's doing better now.

Huge thanks to Kate and Chris who took the kids swimming on Saturday. I had big plans of painting and cleaning the entire house but these plans were de-prioritized in favour of catching up on some much needed rest.

Unfortunately Sydney caught the same bug and developed a high fever over the weekend. She spent all day Sunday on the couch in and out of sleep. Around 5pm her fever broke and now she's on the mend. Sleeping all day meant she was up all night so we are running on fumes today.

3rd Chemo - Pump Removed

Karen's doing well. She had the chemo pump removed today and got a shot of Neulasta to take tomorrow. It's in the fridge next to some yogurt.

Grandma and Aunt Brenda took the kids to the aquarium yesterday. They had a blast, (even the kids enjoyed it) and Karen slept most of the day. Taking the kids during chemo weeks is SUCH a big help. It's better on Karen and just as importantly it's better on them too so thanks for that guys.

K's taking Compazine again (the tongue paralyser) but with Benadryl and it seems to be working. The side effect is complete exhaustion but at least she can keep food down which is important. She's taking a bunch of other stuff that I was going to post but I think I'll skip it.

Two more things tonight: First a funny story that'll give you some insight into Karen's strength. The other day whilst sitting through chemo, Karen left the room to meet with Dr Moriarty. They keep you hooked up to the IV whilst you have your consultation. Once her exam was done she wheeled the IV back into the center of the chemo room and announced to all present "Well....I'm CURED!!!" to which the entire room burst into laughter. Contrary to what you'd think the chemo room is quite an upbeat hang-out.

Lastly, I called the hospital today to inquire as to K's CEA level. It's down to 356. I'm tracking it in a notebook so to-date the progression has been 628 then 511 after 1 chemo, now 356 after 2. This is a very good sign that we are out-pacing the cancer.

I'm going to sneak out now and get her some MaryJanes.

3rd Chemo Session

Karen's sister, Jen took her to chemo today whilst Sarah stayed over and scored huge points minding the kids. This allowed daddy to go to work. Thanks guys.

The chemo regime has not changed, still 5FU, Avastin, Oxalyplatin. This time they changed up the nausea and "supporting" medications. I haven't gotten the full rundown but I'll post it when I do. One thing I know is they switched from an oral to a IV administration of Atavan. By giving the drug through the IV it enters directly into your blood stream and hence has the maximum effect. It's not easy but Karen is amazing and withstood it all with flying colors.

They also re-introduced Compazine as an anti-nausea combined with Benadryl. The Compazine is the drug which caused Karen's tongue to go nuts [LINK]. The Benadryl will act as an instant antidote and we will be watchful for a recurrance.

Needless to say, Karen is sleeping soundly after a very long day.

Neulasta and our Medical Team

This day last week Karen gave herself a Neulasta shot. Chemo kills your whiteblood cells leaving you vulnerable to infection. Neulasta remedies this by giving your bone-marrow a kick in the pants to start producing more. The net effect is you feel extreme pain in your bones, mostly in your hips and spine (areas of lots of bone marrow). The doctor told us it'd feel like you'd been kicked by a mule.

So for the last few days Karen's been on pain killers and today the pain has started to recede. It's tough to manage as you can't really drive a car (to take the kids out) when you're loopy on Percocet.

A lot of folks have been inquiring about our care providers and offering references to other doctors etc. It's always better to get a visual, especially if you're reading this overseas (as I know a lot of you are). I thought it'd be nice to post a little bit about them.

We've been attending Overlook Oncology Center in Summit. Our oncologist is Doctor Dan Moriarty. Here's a link to his credentials [LINK] and he's pictured on the right.

Doctor Dan has been great, a sincere, caring and knowledgeable doctor, and is truely committed to making Karen well. He's been doing this for 30 years so this isn't his first rodeo. Exactly the type of person you'd want as your "cancer quarterback".

Another key-player on the team is our nurse Nancy. She's pictured here in the back row, right hand side.

Nancy has called us a couple of times now off her own bat just to check-in and I think you can tell just by looking at her that she's a very caring person. As you can see from the pics, this is a great group of folks, very upbeat and positive without being patronizing.

Overall we couldn't be happier with the care and support we've received at all levels. If you'd like to learn more about the center or group we're working with click here: [LINK].

We start the 3rd chemo round this coming Monday.

PET Scan Results

Today we got the results of last Friday's PET scan. All was "as expected" meaning there were no new areas of cancer detected. This was good news as now we know what we're dealing with: liver and colon. Period.

The last few days we fell into a real "funk" here, chemo weeks are just like that. It's hard for K to go through, it's hard for the kids to be apart from her and if I'm being honest it's hard to watch K go through it. By the end of the week things are about ready to unravel. This is a new week and we got some good news today so it's time to shake off the funk!

We got more good news today in the form of a lower CEA level. The baseline before chemo was about 629. After 1 chemo treatment, that number has come down to 511. Over 100 points in the bag! All being well this number should continue to trend downwards until it reaches a normal level of between 0 and 3.

It's time to take a break from the big C. Wonderful Aunt Brenda is here! Cynthia and Brad are coming Thursday so it should be a fun week.

Tough Questions and More Side Effects

Although this 2nd round of chemo was better overall, it seems there is no end to the side effects. Most recently Karen's hair has started to thin out, detected by the rather sizable hair-ball in the drain this morning. Luckily her hair is thick to begin with so perhaps this won't be that noticeable.

The sweating has abated and nausea returned over Friday and the weekend. New anti-nausea meds were prescribed to augment the current stuff.

This morning Karen's feet were sore with what she described as a feeling of severe blisters on the balls of her feet. It seems to have worn off as the day has worn on.

Also Sydney has become quite "clingy", waking up each night at 2am this past week, something she rarely does. Yesterday she told me she was worried about Mommy and asked if she was going to "disappear". I think all the coming and going has been hard on her nerves and we resolved to do a better job of making sure she knows when mommy will "go to work".

2nd Chemo - Pump Removed

K returned to hospital today to have the chemo pump removed. The kids spent the day with Grandma (thanks D). All went well but she is very sore. Her right side is really bothering her tonight, a sign the chemo is working we presume. The nausea meds are doing their job this time and side-effects are no fun but manageable.

Tomorrow we go to Overlook hospital for a PET scan. What's that I hear you ask?

"Positron emission tomography (PET) is a nuclear medicine medical imaging
technique which produces a three-dimensional image or map of functional
processes in the body."

...

"While some imaging scans such as CT and MRI isolate organic anatomic changes in the body, PET scanners, like SPECT are capable of detecting areas of molecular biology detail (even prior to anatomic change). The PET scanner does this via the use of radiolabelled molecular probes that have different rates of uptake, depending on the type and function of tissue involved. The changing of regional blood flow in various anatomic structures (as a measure of the injected positron emitter) can be visualized and relatively quantified with a PET scan."

It works sort of like a CT scan or MRI but instead of producing static images of a localized area, it produces 3D images of the entire body and instead of bones or organs, it shows ACTIVITY.

Here's an example:


They inject you with radioactive materials (literally) like carbon-11 (an isotope of carbon) and see where it goes. Remember an isotope is a form of an element with the same atomic number (number of protons) but a different atomic mass (number of protons+neutrons). So without the right number of protons the thing decays.

Carbon-11 decays in 20 mins so it's not really viable to use in the test. They'll likely use Fluorine-18 which has a half-life of about 110mins. That means it takes about 2hours for half the amount of stuff to decay. As it decays it gives off positrons that are picked up by the big circular thing around you. Ironic that when you have cancer they test you with something that could give you cancer.

Blah blah blah, long story short, you have GOT to be on time for this type of test. Otherwise the isotope will have decayed before they shoot you up with it.

The Fluorine-18 will be mistaken for glucose and taken up by glucose-absorbing cells. These are typically your brain, your liver or cancer. The cancer will basically light up.

The test reveals the areas in your body that have active cancer growth. We're hoping it's just the primary tumor in the colon and the tumors in the liver. We won't really be able to tell if the tumors have shrunken from this test as we don't have one to compare it to. We won't get the results until Monday. Tonight Karen has to drink some jars of fluids to prep. Here's a link to the exact group we'll meet with [LINK].

Long story short, this is amazing technology that can really give us some good information around how to treat K. I doubt we would get access to this advanced technology in my native Ireland or even in some other parts of the U.S.

Fingers crossed for a good result.

2nd Chemo Treatment

Karen had her 2nd chemo treatment today. Her brother Chris was able to accompany her, allowing me to go to work (thanks Chris). The visit was overall a positive one and so I have some new information as follows:

1. Karen shouldn't have been as sick as she was after the first treatment. The issue we think was the nausea medication. She lost a lot of sleep and a lot of weight. Today they switched out her nausea meds (no more Kytril or Compazine). Now she's on a mixture of Emend, Aloxi and Decadrun. In the doctor's words they're "kicking it up a notch".
2. Karen had some more severe neuropathy in her hands making her hands cramp up entirely with the Oxalyplatin but thankfully it wore off before she left the hospital.
3. Ironically, the nausea meds make you sweat but because you're on Oxalyplatin you can't take anything cold!!!
4. K's white cells were slightly low this week which is normal from chemo so on Thursday they'll give her a Neulasta shot to build them back up. Neulasta makes your bones and spine sore so she will have some pain medication for that.
5. Constipation is another side-effect of the anti-nausea (how ironic again that you can eat but not poop) so they also have prescribed a regular cycle of prune-juice and anti-constipation meds to keep things moving.
6. CEA stands for Carcino-Embryonic Antigen. It's a measure of how much cancer is growing in your body. The number is not important so much as the trend. Normal range is 0 to 2 and Karen's CEA was 237 when initally diagnosed. Today we found out that the CEA was 600 two weeks ago when chemo first started! By next treatment we will learn if it is trending downwards.

Finally, the Doc gave K an exam and confirmed what we had suspected the last few days. Basically over the weekend Karen had experienced some pain in her liver. K felt like the tumors were shrinking as things weren't "sticking out" as much. We figured the pain was related to the shrinkage. Sure enough Doctor Dan confirmed this in his exam today which is TERRIFIC news. The shrinking tumors can cause inflamation in their wake which is the pain she was feeling. This is fantastic news as it means the chemo is working.

Clearly God is sending us the help we need. We are quietly confident tonight that we can get through this. Keep praying for tumor shrinkage!

How Do You Eat an Elephant?

One bite at a time!

Apologies for the lack of updates. This is primarily due to the lack of anything new to report (which is good). Karen has stopped taking Compazine (anti-nausea) and is now solely on Kytril for nausea. Her tongue is back to normal.

She is dog-tired each day but overall feeling much better this week and has been able to return to somewhat normal eating. She's also added "Boost" and "Ensure" supplements to the regimine to help build her back up to normal weight.

So why the goofy title on this post? Basically because we are running a marathon, not a sprint. The initial panic of diagnosis has worn off and we are now trying to settle into a routine that'll work for the next 6+ months of treatment. There are 11 more rounds of chemo, each round is 2 weeks, the next one being on Tuesday the 29th May.

That will be followed by a PET scan on Friday the 1st. This will tell us whether there is cancer anywhere else in Karen's body besides the colon and liver. Fingers crossed on that one.

Once again I must thank so many people. It's incredible the amount of well-wishes that have been flowing through the Shanahan household. I have always known that Karen is special but this experience has just re-affirmed that knowledge by witnessing the impact her illness has had on the people around her. It may be only a short one-liner but each and every note gives her that little lift at the end of each day.

Over the passed few weeks I've also made contact with a number of patients and care-givers who've been so supportive aswell. Although I would never wish this experience on anyone it does help to know we are not alone.

And so we are in this for the long-haul and although a few days may go by without an update on the blog, know that your messages are reaching us and encouraging us each day.

A Trip to the Emergency Room

Karen's been feeling nauseous all week. In addition to chemo the doc's prescribed something called Kitrol(sp?) as well as something called Compozine(sp?).

Tonight, just as Sydney was going to bed Karen's tongue began to swell. I put Syd to bed despite her protests for mommy. 30 mins later Karen's tongue was uncontrollable and she was sounding a lot like a deaf person. Our oncologist had called us back. He suspected an allergic reaction to the nausea meds and sure enough he was right.

So we're sitting here in the emergency room whilst Karen gets an IV of Pepcid, Benadryl (sp?) and fluids. Her tongue is getting back to normal and hopefully she'll be home within a few hours.

Chemo - The Aftermath

For the last few days Karen's been carrying around a small pump which has been administering one of her chemo drugs. Today the pump was removed and the first treatment completed. Still plenty of residual side effects happening.

Here's a run down of what she's getting:

• Avastin - The new wonder drug - VEG-F inhibitor, prevents the tumors from forming their own blood supply, they ultimately wither and die (what I've been visualizing) [LINK].
  
• Oxaliplatin - A type of chemo. Something that makes you super sensitive to cold. Even breathing in sharply or opening the refrigerator can be painful [LINK].
  
• 5FU also known as Fluorouracil - Another chemo, this is the one the pump administers over 46hours [LINK].
  
• Leucovorin - a vitamin, also known as folinic acid, makes the 5FU more effective [LINK]
  

I think that's it. Estimated cost between $10,000 and $12,000 per treatment. Each one comes with it's own set of interesting side effects and combined they don't exactly cancel one another out. Unfortunately K hasn't eaten or slept much the last few days. I'm hoping she can build herself back up before the next treatment on the 28th May.

1 down, 11 to go.

1st Chemo Session

It's Monday morning and we've finally started actually treating the cancer. Everything up until this point has been diagnostic. Today we're getting "chemo".

Our appointment was for 9am but we got here a little late, 9:10am, the nurses were fine with it. Karen's hooked up and drugs are streaming into her system. I get the feeling we've entered a bizarro-world.

We're in the chemo room. It's a hospital room with lots of comfortable chairs arranged in an open-plan. Patients are sitting in the chairs with a caregiver beside them, well most of them. All the patients here are 55 or older by my estimation and they are all characters.

There's Steve, the well spoken gentleman, he's quick to introduce himself. He's having trouble with his port. Nurses jokingly say he's trouble.

Then in walks Gerry, a Larry King look and sound-a-like. He himself is a doctor and he's quick to offer the medical point of view to the others who're complaining. Medice, cura te ipsum!

There's the skinny talkative Jewish sounding guy. He's been here over an hour and hasn't stopped talking since he walked in. He's got all sorts of stories about articles from the AARP. His insurance has been giving him trouble. He can't sit still at home but doesn't have the energy to do his yard work.

The lady next to Woody Allen is just nodding to his rants. God bless her.

There's a fish tank by Karen, and on the nurse's desk they keep a live frog in a tank by itself. It's like being in a weird Chemotherapy Breakfast Club.

Then there's Karen. She's getting anti-nausea meds, Oxaliplatin, Leucovorine, some kinds of Calcium thing, then 5-FU in a pump over the next 46hours. The nurse warns against drinking anything cold or opening the fridge without gloves on. She'll be here at least 5 hours today we think. So far so good. The tumors are quaking in their boots.

Thanks to All

Just a word of thanks to all that have sent get well cards, mass cards, mass bouquets, emails, phone calls and best wishes to us the last few weeks. It really has meant a lot to get little notes of support and encouragement from everyone and they really have kept us going through this so far.

The Port, Robert Wood Johnson and Happy Birthday

Yesterday Karen's "port-a-cath" or port was "installed". This is a small rubber disc with a few tubes attached. The whole thing goes under your skin around your collar bone on the right side. When a nurse needs to give you a chemo treatment or take blood, they simply draw from the disc, thus saving wear and tear on your veins. Karen took it like a champ.

Today we met with doctors from Robert Wood Johnson. Overall they were consistent with what we'd heard from Overlook hospital. The folks in the waiting room were all complaining about being kept waiting and called in for unnecessary reasons, despite having appointments setup in the very near future. One 77 year old was asked to wait 40mins to take some blood when she'll be back next week for chemo. Why they couldn't wait until next week was beyond her. I got the feeling that this was not the place for us. Karen felt the same way. I have no doubt in the knowledge of the doctors but the bedside manner and level of care was not on par with what we've seen closer to home. We will likely return here for surgery though.

Lastly, today is Karen's birthday! Happy birthday sweetheart.

Amazing Stage IV Recovery

Today I was put in touch with a person (I won't say his name without asking) who had Stage IV diagnosed in 1998 and today is free and clear. The amazing thing is he beat the cancer without surgery, just "plain old chemo". Hours after hearing from him I'm still floored by his recovery.

If you have cancer, tell as many people as possible as you never know where your inspiration will come from.

UPDATE: Turns out surgery was involved in this instance. Still always great to hear of another cancer survivor.

The First Oncologist

We met with our first oncologist, Doctor Dan Moriarity today in Summit Overlook hospital. They are pretty good reputation-wise and closer than Robert Wood. We'll use RW for a second opinion but we were encouraged by the consultation this afternoon. It's about 20mins from our house if you race. 30mins if you take it easy. He's a nice guy, soft spoken but calm with easy demeanour.

Basically he's scheduling a PET scan for sometime soon but starting treatment in the mean-time.
A port will be inserted next Tuesday the 8th of May. This is a rubber-plug designed to make the drugs easier on your veins. It sits under the skin near your collar bone.

Then starting 2 months of chemo, with Avastin and 5-FU administered with a take-home pump. Chemo will be every two weeks starting on the 14th of May.

After a bunch of research on the web I have learned this is the standard chemo protocol for colon cancer it seems regardless of the stage. I've also heard that this is an "aggressive" treatment of chemo. The Avastin alone costs $10,000 per treatment. One person has estimated a single chemo appointment to run into $14,000 and my wife will receive them for the next 2 months. Thank God for insurance.

I did record everything with my MP3 player and I'll review everything tonight. I'm also starting to believe the Chemo will be the same at Robert Wood Johnson so why go out of your way to get to a doctor that's further away??? Overlook will be far more convenient travel-wise. Let's see what the 2nd opinion reveals. Definitely if surgery is considered in a few months we'll go to RobertWood as I think they have the best surgeons.

After two months they will re-scan and expect everything to shrink and shrivel away into nothing. That's what I'm visualizing in my spare moments.

The First Colonoscopy

Yesterday (May 2nd) my wife had a colonoscopy. The found a small tumor about 30cm into her colon. All other parts of the colon are within normal limits. The rectum is normal (thank God). So this was a good outcome. The tumor is not the size of a bowling ball or anything. It's about half the diameter of her colon. I guess she just was unlucky that it grew so quickly through the wall and went to the liver. They biopsied the mass and marked it with dye.

Last night she had a fever of 101.5 and after calling the doctor, took some tylenol and it went down.

Friday May 2nd: Colonoscopy Biopsy Results

Today we got results of the colon biopsy, confirmed the mets in the liver came from that tumor. No surprises but I'm learning to take everything that's not BAD news as good news. Also got Karen's CEA, it's 237. I was alarmed at this at first as normal ranges are between 0 and 10. From research on the web I am told the typical CEA for a stage IV patient is between 700 and 1000. The key is that this number goes down once chemo starts. It'll eventually reach 0 once all cancer is out of her body.

Make no mistake, this is the beginning of a long journey. We have a strong marriage and two beautiful children. I feel like we are really just starting our life as together as a family. We appreciate everyone's support thus far and recognize that we'll be leaning that much harder on people as time goes by.

Karen and I are up-beat and determined to kick some cancer ass.

The Biopsies

The First Biopsy

The biopsy was done on the 17th and we got the results on Thursday the 19th. They were negative meaning the biopsy indicated normal tissue. We were elated at this news but I should've known to ask more questions. With the wind in my sails I booked my wife and daughter on the first flight to Dallas the next day and they were able to attend the wedding. Unfortunately my daughter was sick the entire trip and in hindsight should've stayed home.

The Second Biopsy
The following Monday (the 23rd) a second biopsy was done to confirm the first result. The radiologist(Dr Sneickus) was frustrated that we had not gotten a result from the first procedure and it was then that we learned it was possible the first result was a false-negative. He promised the results to us the next day. Unfortunately these results took longer and we didn't get them until Friday the 27th of April over the phone from Dr Lipksy. He told us that Karen had cancer, that it was an advanced stage (stage IV) and that it would require chemo and most likely surgery. He could not give a prognosis until further tests were done. He recommended we hang up the phone, schedule a colonoscopy through his office and setup appointments with an oncologist, Doctor Moriarity in Overlook hospital, Summit.

The First Step

On April 07th, 2007 my wife went to the emergency room complaining of a pain in her right side. It had been there all week and she'd been scheduled for a CT scan that morning. Unfortunately she'd forgotten to drink the Berium and hence went to the emergency room in the hopes that they could expedite the diagnosis.

The Emergency Room
During the course of that Saturday she underwent a series of blood tests and scans including a CT scan and an MRI. The results indicated numerous large lesions in her right liver and left lobe. By 9pm I was on the way to the hospital. "Under Pressure" was playing on the radio. Whilst I was driving to the hospital my wife was told by the doctor on call (Dr. Michael Gould of Somerset Medical Center) that she had colon cancer which they believed had spread to her liver.

He should not have done that without a biopsy. No one can tell you you have cancer without a biopsy.

Monday saw a series of phone calls and triage. We scheduled an appointment with a GI doctor (Dr Marvin Lipsky) on Wednesday the 11th of April 2007. That appointment came and went. He was thorough, spoke very fast with little elocution. The diagnosis was that she did not have a blockage in her colon and that they would do a liver biopsy to determine whether the liver lesions are benign or malignant indicating cancer. The earliest we could schedule the biopsy for was the following Tuesday (17th). Karen's sister was getting married the following Saturday (21st) in Dallas and Karen would not be cleared to fly after the procedure. This was a difficult decision but the need to diagnose the problem outweighed the wedding and on Thursday the 12th we decided to cancel the trip to Dallas. That week I worked Tuesday, Thursday and Friday.