Wednesday, October 24, 2007

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.

Tuesday, October 23, 2007

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.

Saturday, October 20, 2007


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.

Wednesday, October 17, 2007

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.

Tuesday, October 16, 2007

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".

Thursday, October 11, 2007

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.

Wednesday, October 3, 2007

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.

Monday, October 1, 2007

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.