Tuesday, July 31, 2007

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].

Monday, July 30, 2007

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.

Thursday, July 19, 2007

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.

Wednesday, July 18, 2007

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.

Monday, July 16, 2007

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.

Tuesday, July 10, 2007

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.

Sunday, July 8, 2007

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.

Friday, July 6, 2007

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.

Thursday, July 5, 2007

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.

Tuesday, July 3, 2007

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!