Never Underestimate The Power of Denial

No, I'm not talking about the Aswan Dam. I'm talking about the ability to ignore things that can kill you. For me, that thing is cancer.

For the past few months, since we have learned that the cancer seems to have returned, I have vacillated between thinking the worse, and just ignoring the whole thing in hopes it would disappear. Both ways of dealing with this are wrong. But at least with Denial, you don't spend your time wondering "what if?"

So, where do things stand for now?

Roni and I have started down the road of meeting with PMP specialists. A couple of weeks ago, we met with Dr. Loggie in Omaha, NE. We really liked him and appreciate his philosophy of treating the patient and not just the disease. He also said that he is more concerned about giving me the best "Quality of Life" for as long as possible. He also said that includes not jumping into surgery right away as it seems that otherwise, I am doing very well. And apart from having this thing growing inside of me, which left untreated can kill me, I am doing fairly well. I feel fine and am fit. OK, I do need to get back to the gym, but I'm no worse off than many others that don't even have cancer.

In lieu of surgery, Dr. Loggie suggests we try the simplest things first. This means that right now I am starting with just a COX 2 inhibitor (Sulindac - similar to Celebrex). He said he has seen some success with that, albeit very little success. If that doesn't seem to help, we will most likely add Xeloda to the mix. Xeloda is an oral form of chemo, which I was on when all of this began. I tolerated it OK, and it is much easier to take than having an IV stuck in my hand and then having poison pumped into my body.

As for surgery? Barring a miracle (which we continue to pray for), surgery is inevitable. We're just not sure when.

And next week, we are heading to Washington DC to meet with Dr. Sugarbaker to get his opinion, then on to Baltimore to meet with Dr. Esquival to get his take on things. Dr. Esquival trained under Dr. Sugarbaker, and actually assisted him with my surgeries. I know this for a fact because we got a bill from him. :-)

That will give us the opinion of three PMP specialists, and we will then decide who we want to go with.

One good thing about the trip to DC is that we are heading down there on Saturday, Jan 5th and we will spend Sunday, Jan 6th doing some sightseeing and just enjoying the city. My appointments are on Monday, so we will head home Monday afternoon after my last consult. So, sometime after that, I'll post again letting you all know what happened.

Until then, thank you all for your prayers and support. Even though they are not needed as urgently as last time, they are still greatly appreciated.

Kevin

Update Long Overdue

I noticed I haven't posted since Sept 11, less than two months ago. For those wondering how everything went, I'm afraid the news is not so good.

My tumor markers continued to climb, and the CT scan confirmed what we feared, the tumor seems to be back and growing. Fortunately, it seems to be growing slowly, which gives us time to decide the best plan of action.

We heard back from Dr. Sugarbaker (the doctor who operated on in Feb and July 04) and he is suggesting we just wait and see what happens, and to continue with the normal routine of tumor marker tests and CT scans. I don't feel very comfortable with just waiting though. In the meantime, we are contacting some other PMP specialists to get some more opinions. The trick is, we have to travel to see these other doctors. Two are in Baltimore, and unfortunately see patients on different days. The other specialist is in Omaha, NE. We haven't made any appointments yet, but when we do, I'll post again with more info.

And now some good news. Last month we got our new lease for our apartment, and they wanted to raise the rent almost 17%. That was way too much, especially for the small 1 bedroom apartment we have. After looking around, we have discovered that we can no longer really afford to live in Manhattan, so we found a new apartment in Riverdale (which is part of The Bronx). Although we are moving out of "the City", we will still officially be in New York as The Bronx is one of the boroughs of NYC. The rest of the good news, our new apartment is much bigger than our current apt. We will have two bedrooms and two full bathrooms. Besides closets in both bedrooms, there are three other closets (1 linen closet and two other large closets). This means we will have much more space and will finally be able to put everything away, and all of this will cost us about $200 less than what we are paying right now. And the bonus is, we'll have a balcony. That is one thing I am really looking forward to.

So right now, we are in packing and moving mode. Once we get settled in the new place, we will have to get in "meeting with doctors" mode. Something I'm not especially looking forward to.

Needless to say, both Roni and I were disappointed to hear the news about the recurrence, especially as I had been doing so well, and had made it to the 4 year mark of being diagnosed. But we have gone through this before and know what to expect, which is one reason I'm not looking forward to it. :-) I don't relish the thought of more chemo and another surgery at all. But I've done it before, and will do it again if need be.

We have been praying for a miracle, and we cherish all of your prayers as well. Sorry again for not posting sooner, but aside from moving, I've been trying to ignore anything to do with cancer. As we say, never underestimate the power of denial. :-)

Kevin

One More Week...

... till my next tumor marker test.

Some people have been asking how I have been doing, so I thought I would put up a quick post to let you all know.

I'm doing pretty good, all things considered. Feeling fine, and trying not to worry about something I don't know of for sure. Although I haven't been in about a week, I have been going back to the gym. I haven't gone riding in a few days because the bike is at the dealer's for its 5000 mile service. I hope to pick it up tomorrow and will probably have 400 more miles on it by the end of the weekend. So apart from the fact that I MIGHT have recurrence, I'm doing pretty well.

I have my tumor marker test next Monday, then will schedule my next CT scan shortly after that. Once I get those results, I'll let post again. Until then, I'm going to try and not to worry about things. Of course, sometimes that is easier said than done. :-)

Kevin

Possible Recurrence...

One day after my last post, I had my CT scan. That same day I shipped the films off to Dr. Sugarbaker to get his take on things.

According to the report made by the radiologist that read the films, there was only one spot of concern. The spot was on the small bowel and mesentery (the tissue that connects the small bowel to the back wall of the abdomen). This was a little disconcerting, but I wanted to hear back from Dr. Sugarbaker before I started worrying about anything.

A few days after the scan, I got a call from Dr. Sugarbaker's office, and the news wasn't good. According to Dr. Sugarbaker, he saw three spots that could be recurrence. One spot is on the stomach, one on the spleen and one on the omental bursa. Dr. Sugarbaker suggests surgery, which would result in me losing my stomach and spleen, and that would be the easy part. Supposedly the hardest part would be getting the spot on the omental bursa, which would require going through the diaphragm, and being careful not to nick the aorta.

The strange thing is, he didn't even metion anything about the small bowel and mesentery, so I guess he didn't believe that was anything to worry about.

Needless to say, this was certainly NOT the news we were hoping for. Being told that I have a recurrence, and the thought of going through yet another surgery was pretty devastating. I just started going through everything that I would have to do again like drink the go-lytely (the really yummy stuff that cleans out your bowels for surgery, and by "yummy", I really mean yucky), go through the surgery, deal with the NG tube (have I ever mentioned how much I hate the NG tube?), go through recovery in the hospital for 2 - 3 weeks, then probably that much time again at home, get the stitches removed, and of course, learning to eat without a stomach.

So, what to do. Last week Roni and I met with my oncologist to discuss my options. The options are 1) wait a couple of months and have another CT scan, 2) try chemo or 3) go for the surgery. We have decided for now to wait the two months and then have another round of tests (tumor markers and CT scan). The main reason for this is so Dr. Sugarbaker will have another set up films to compare with the last ones, and if something is there, then we can determine what to do from there. But we are praying that the spots that are there now, will either be stable, or even better, they will completely disappear. We believe G-d can, and does do miracles, and we pray that He will do one for us.

Personally, I'm doing OK. Just trying not to dwell on "what could be" and just live the best I can. I've been riding the Harley, and even going to the gym about 3 times a week. Sometimes the fears creep in, and I have to be careful not to go down that road, thinking of the worst situations. This is not always easy to do, but I just remind myself that none of us are guaranteed tomorrow, so I am thankful everyday for all that I have, I live in a great city, have a good job, I ride a Harly, and most importantly, I have a great and beautiful wife.

Good News & Bad News

On Friday the 13th, I went in for my blood tumor marker test, and on Monday, I got the results.

First the bad news. My tumor markers went up again. My CEA went up to 5 (with the range being 0 - 2.5) and my CA 19-9 went up to 52 (range is 0 - 37). Now, that in itself is not an indication that the tumor as returned, but the fact that the markers have continually risen over the past year could fall nicely into the bad things category.

The next step is a CT scan, which is scheduled for tomorrow (Monday). We're praying that the scan will show nothing, and the fact that the markers went up is just a fluke. I'll post again after I get the results.

Now, the good news. As you may remember from previous posts, my triglycerides were extremely high. About 6 months ago, they were up to 1140 (they should be below 150). After being on 1 gram of Niaspan for three months, the went down to 668. My doc had my up the prescription of Niaspan to 2 grams per day, and with this last test, they went down again to 406. My overall cholesterol also went down to 146 (down from 200 six months ago).

So, how am I doing with the high tumor markers? I must admit when I first got the results, I started to get scared. All the fears of recurrence started flooding my mind. Will I need more chemo? Will I need another surgery? Will I end up with a permanent ostomy? One of the things about having cancer is that little nagging voice in the back of your brain, trying to convince you the worse is going to happen.

Even though nothing has changed, and I don't have any results of the CT scan yet, I am doing better. Emotionally, I'm a bit nervous about the scan and the tumor markers, but I also reminded myself that no one knows what will happen to them. None of us are guaranteed tomorrow, so we need to live life and enjoy it. I'm thankful for my wife, my friends and family and the fact that right now, I have one more day.

Of course we are praying that everything works out fine. G-d has been very good to us, and we can do nothing more than to put this situation into His hands, and pray that He will continue to give us the strength we need to get past this hurddle.

And it doesn't need to be said, but I'll say it anyway, all of your prayers and support are welcomed and cherished.

Kevin

3.9, 158, 668

To most people, those numbers mean nothing, but for me, they were good news.

Two days ago I went in for my tumor marker blood test. One thing the doc was more concerned about was my high triclycerides and cholesterol. With the last test, my cholesterol was 200 and my triclycerides were 1140. For those keeping score at home, triclycerides should be 150 or less, so yeah, it was VERY high. I started taking some medication and fish oil tablets and this time my cholesterol was 158 and my triclycerides dropped to 668. Still high, but it dropped a lot. I checked with my primary care physician and he suggested upping the dosage of the Niaspan I have been taking. I just refilled it, so I will wait a month before taking a higher dosage. With that, hopefully everything will be within limits. I'd hate to beat cancer just to have heart problems. Besides, I promised Roni that I wouldn't die of a heart attack. :-)

As for the 3.9 number, that was my CEA marker. The normal range should be 0- 2.5, so it is high, but last time it was 3.7 and a rise of 0.2 after 3 months is negligible, so I'm not worried about it.

For those wondering about the bike, it's great. I love riding and being able to get back on the road has been good therapy. This weekend is supposed to be nice (high 60s and sunny), so Roni and I are planning on riding to Drexel Hill in PA to visit some friends from our PMP support group. Another good thing about the bike is being able to visit other PMPBB members in the area.

Well, that's about all for tonight. Thank you all again for your prayers and thoughts.

Kevin

At the dealer

At the dealer
Originally uploaded by kevkersey.

On Friday afternoon (I was supposed to pick it up Friday morning), I picked up the new bike from the dealer. It was a beautiful day, although a bit cool. I ended up riding about 115 miles through some scenic New York country side.

I also stopped by and met a couple whose husband is a cancer patient. We had a good chat adn it was good to see him doing well, even though he has been having some problems.

From there, I headed home. I crossed a bridge coming down the Taconic State Parkway and glanced over to the right to see a beautiful sunset and thought to myself, it doesn't get much better than this.

It was great to on a bike again. I'll post some more pics later.

Kevin

3 Years & 1 Day Post Op

On Feb 18th, 2004 I spent 10 hours under anesthesia while Dr. Sugarbaker sliced me open, dug around in my innerds looking for the cancer cells that had been threatening my life, and poured chemo into my abdomen.

Sometimes it seems like that part of my life never happened, mainly because I was hopped up on pain meds at the time and don't remember a lot of what happened. :-) So, every year around this time, I read back through this blog and remind myself of where I was, and what has happened to me since then. I guess the fact that it seems like a whole different life is a good thing, but I think it's also good to remember so that I never become complacent with what I have.

The last three years has not been all fun, there's been a lot of hard times, and scary times, but it has also made me realize all that I have. A beautiful, loving wife, good friends, and a great family. We have had the opportunity to travel to some fantastic places like Tucson, AZ, Key Largo, FL, Alaska and Israel. And for our 15th anniversary, next week we'll be in Nassau, Bahamas. It's been a great life, and I am always thankful that I have been given more time to appreciate it. I just pray that I have many more years, especially since we'll be getting our new Harley in a couple of months. :-)

Kevin

Whew!!

Well, I had my CT Scan done this morning. Drank the gallon (at least it seemed like a gallon) of the contrast, got my scan and they finally let me go.

I thought I wouldn't get the results until tomorrow, but my oncologist called me today abour 5 PM. Because of the rise in tumor markers, at first I started to panic. Then he said, "I just got the report, and there was no significant change." I said, "Whew, thank you!!" He replied, "I thought you might like to know." I said, "Yes I did, thank you very much."

So, that was the good news. And I was able to breathe again.

For those who have never seen a CT scan report, here are some of the more interesting comments:

-- Evaluation of the supraclavicular and axillary regions reveal no evidence of lymphadenopathy.

OK, I have no idea what that means, but I guess it's a good thing.

Here's the last two comments:

-- Healing left posterior rib fracture (I never even knew I had a rib fracture.)

-- Comparison was made with with a previous examination of July 28th, 2006. There has been no significant interval change. (That was the best part).

So, with that good scan, I'm not going to worry to much about the rise in my tumor markers and just wait to see what the next round of tumor marker test show.

Thank you all for your continued support and prayersl. I never take any of them for granted.

Kevin

A Couple of Things...

First thing, I had my tumor marker test done last Thursday. I haven't seen the report, but my oncologist called today to let me know some of the results. The liver functions were fine, my cholesterol was 200 (that went up), and my CEA was 3.7. That was the bad part. The normal range for CEA is 0 - 2.5. The highest it ever got before was 3.1 and last time it was 3.0. So it was a bit of a jump. My oncologist didn't seem too worried about it, and said that I might want to get another test in a couple of months. I might give Dr. Sugarbaker a call tomorrow and see what he says about the jump.

I also have a CT scan coming up, so if that is stable, then i won't worry too much about the CEA numbers.

The other thing is my complaint about blasted insurance companies. I'm thankful that they pay my bills, but they sure make everything else difficult. With both of my surgeries, my insurance company never paid the full amount the first time. They paid part of it, then I would get a bill from the hospital, have to call the insurance company, get them to resubmit the bill and finally pay it all the second time. It got so bad that a couple of years ago the anesthesiologist sent my bill to a collection agent because my insurance company didn't pay. I called the insurance company and they said they would pay it.

So, jump ahead to last week. I get a call from the collection agency again saying the bill that the insurance company didn't pay the first time, it overdue. Turns out, they never paid it. Now, I have to wait for the information from the collection agency, call the insurance company again, then hope that they finally get things right two years later.

Stupid insurance company.