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.