Hope and Reality

It's a beautiful day here in NYC. About 60 degrees and the sun is shining. Elke threw up this morning, so instead of going for a ride, I'm staying home with her to make sure she is OK. And I'm taking this opportunity to sit on the balcony and enjoy the great weather.

So, getting back to the title, "Hope and Reality".

I was going to call this "Hope vs. Reality", but I think they often coincide nicely with each other.

Hope - When one is told they have cancer, different things run through their minds. One is "Oh my G-d, I'm going to die." Another is, "I'm going to beat this thing." As cancer patients, we hope that we won't become one of the cancer death statistics. We hope that we will be one of the people that can say, "I beat cancer!" or "I've been cancer free for [insert number here] years." We hope we won't have to do chemo, but if we do, we hope it will be effective. Whenever we have tests, we always hope to hear the doctor say, "I have good news..."

We base this hope on different things. We base our hope on our belief that G-d can heal us. We base our hope on modern medicine and the wisdom of our doctors to do what is best. Sometimes we base our hope on sheer luck. For many, their hope is realized.

And for many, their reality does not measure up to their hope.

For many cancer patients, me included, the reality is that cancer is a killer. It robs one of time, health, family, dreams...

Roni and I got hit with the big "reality club" when we spoke to the doctor and he said "It looks like the signet ring cells (the agressive cancer cells) are starting to act like signet ring cells." Up till then, we were hoping the radiation I had was successful and that I would be able to have another surgery to remove the remaining two tumors. The reality was that the cancer had spread to the lungs, was starting to grow in the liver, recurred in the splenic bed and the tumor on the mesantery (sp?) grew. So now we deal with the reality that, barring a miracle, this cancer is going to continue to progress and be the thing that kills me.

As our reality changed, so does our hope. We continue to hope for a miracle, but make plans in case that doesn't happen. We hope that it is a long time before any symptoms appear that would diminish my quality of life. We hope that we can continue to share adventures, like going to Australia, for a long time yet.

Among the many things we have learned since starting this journey, is that our hopes and realities often change.

There is one thing that we have always hoped for, and has been a constant reality, and that is G-d has been with us through all of this. This doesn't mean that we have always leaned on Him. It doesn't mean we have always felt his presence. It doesn't mean we have always been happy with the path He has led us down. But looking back, we can see that He has been by our sides. He has given us the strength when we didn't think we could go on. He has brought people into our lives who have shown us what courage in the face of death looks like. He has brought friends who have been with us, and if nonthing else, just agreed with us that cancer sucks.

G-d hasn't always brought us everything we wanted, but He has brought us everything we need. One of our hopes now is that we continue to see the reality of G-d in our lives.

Good News and Bad News

Unfortunately, the Bad News is badder than the Good News is gooder.

First the good news. I don't have to have another surgery. No GoLytely. No IVs. No NG tubes. No drains. No "other things" that makes surgery and recovery, shall we say, unpleasant.

Now the bad news.We heard back from the doctor in Omaha concerning my recent CT scan and it looks like there are new spots of cancer. 2 in the lungs. Recurrence in the splenic bed (where my spleen used to be), and the tumor on the mesantary is enlarged. That means that the treatment that I had before, both the chemo and the radiation didn't do a lot of good. Probably the thing that hit us the hardest was when the doctor said the Signet Ring cells were starting to act like Signet Ring cells. For those of you that don't know, Signet Ring cells are the most aggressive cells of PMP. I have had them from the beginning (over 6 years ago), and the doctors have been amazed that I was still around. That means that for some reason, they weren't acting like the normally do. But, now they are.

So, with the new tumors, surgery isn't really an option as the doctor would not be able to do a complete cydoreduction (i.e. remove all the tumor). This leaves us with two options. 1) Do nothing and just watch and wait. Enjoy life and try to get in as much "living" as possible before the symptoms start becoming too bad. Or 2) try more chemotherapy and biological agents. There is one "cocktail" I have not had which is a combination of Irinotecan (chemo) and Erbitux (bilogical - not chemo), which may help keep the tumors at bay. We know they will not kill the cancer, all we would be able to hope for is that it would keep the cancer from growing. However, we would have no idea how long it would be effective. Also, we don't know how it would effect my quality of life. Would it drain my energy? Would it keep me from being able to travel, or ride my Harley? If so, would it be worth it to go through all of that just to be "house ridden" for who knows how long?

Lots of questions, not many answers right now.

The news hit us both pretty hard, especially as it was the news that we were hoping NOT to get.

Roni and I have been married for over 18 years, and we often talked about visiting Australia for our 20th anniversary so I could show Roni where I lived over there. We are currently considering making that trip this year. Maybe in April or May. If we go, we will fly to Brisbane and rent a car and drive north to Charters Towers. It would be good to see some of my friends from my high school days, and see how much things have changed, or stayed the same since I left. If we make the trip, we will be sure to keep everyone updated, and will be sure to take A LOT of pictures.

I am sorry to even have to bring you this news about my cancer, but knew eventually I would have to post something like this. We appreciate your prayers and know that G-d will be with us during this leg of the journey as He has been all along. We don't know what the future holds, but we do know who holds the future.

I'll write more later, but for now, at least we have one more day...

No News is... No News

Well, as you know from the last post, our meeting with Dr. Loggie was canceled. I went ahead and got my CT scan here in NYC and had the results sent to Omaha. We were hoping that we would hear back from Dr. Loggie yesterday, but for some reason he didn't call. So, we still don't know what the results of the CT scan is, and what our next steps will be.

Yes, it is very frustrating.

If surgery is in the future, it is scheduled for March 25, which is just over two weeks away. That means if we find out that is the option, we only have a couple of weeks to arange a dog sitter for Elke, family leave for Roni and everything else we need to do for a hospital stay in Omaha.

Again, when we learn what is going on, I'll let you all know.

Kevin

Appt. with Dr. Loggie Cancelled

Well, we will not be going to Omaha this week to see Dr. Loggie. He has some personal things to take care of, so our appt. with him has been canceled. Instead of going to Omaha to get a CT scan, I will be getting it here in NYC, then send the report and CD to Dr. Loggie for him to look at. He will then let us know what he recommends, which could be to do nothing because the radiation didn't help that much. Do nothing because the radiation worked great and nothing needs to be done. Or, come to Omaha for another surgery to remove the existing tumors. If it's the last choice, we already have a tentative date for the surgery, which will be March 25th.

So, it looks like another week or so of waiting to found out what lies ahead...

When we find out, we'll let you all know.

Kevin

One More Week

Yesterday was my 18th day of radiation and chemo. That means I have 6 more treatments. On Thursday, the doc said I can double up next Friday to get everything out of the way, and be finished. It'll be on heck of day, but I think that is what I am going to do. So next Friday I'll go in for radiation in the morning, then again at night. Fin.

With that out of the way, the next thing will be a trip to Omaha for a followup consult with Dr. Loggie. We will be leaving LGA on Mar 2, staying overnight in Omaha, then I have to be at the hospital at 7 AM to check in and start drinking my barium (blech). CT scan will be at 9 AM, and then I'll see Dr. Loggie at 10 AM. Hopefully we can meet Kat for lunch, then it will be off to the airport to catch our flight home. Another whirlwind trip.

If Dr. Loggie says he wants to proceed with another surgery, then we will probably head back there in three or four weeks for that. I'm still hoping he'll say another surgery isn't necessary...

As for how I'm doing, the chemo and radiation is making me exhausted. I'll be glad to get this over and done with.

That's it for now. Thank you all again for your thoughts, prayers, good will, etc.

Kevin

Over The Half Way Point

Just wanted to let everyone know that I am officially over the half way mark on my radiation/chemo treatment. Whoo Hoo.

Tomorrow (Monday - 1/25) will be treatment #14. With a total of 24, that will mean after tomorrow, I will have to go only 10 more times. I won't be sad at all to say "adios" to that place.

The treatment themselves aren't that bad. I lay down with my hands over my head. They line be up (using tattoos and targets drawn on my stomach and sides), then rotate the radiation machine at seven different angles to zap me. That way the tumors are getting over 100% of radiation, but since it is hitting me at seven points, my skin is not getting burned.

I am also taking Xeloda, an oral form of 5FU chemo. No horrible side effects, but in conjunction with the radiation, it is making me really tired. I have the weekends off (no radiation or chemo), so by Monday I start to feel somewhat normal, and then by the end of the week, I feel pretty crummy.

So, you might want to know if this is being effective. Honestly, I have no idea. I had my tumor markers taken right before I started the treatment, and I am sad to say, they jumped pretty dramatically since last time. My CEA (normal is between 0 - 2.5) went from about 7.6 to about 21 before treatment. I had them taken again last Wednesday, and the CEA is now at 29.3. Quite a jump from just a couple of months ago. The CA 19-9 went from 40 a couple to months ago to 56 before the radiation treatment started to 65 from last Wed. To say the rise is disconcerting is an understatement. I'm not sure what would cause the quick jump, besides tumor growth that is.

So, apart from all of that, I am doing relatively well. Tired a lot, but I am getting some exercise with walking Elke. When it's nice out, I take her to the dog park so she can play with other dogs, which helps tire her out.

After the radiation and chemo, we will head back to Omaha to meet with Dr. Loggie. I'll get another CT scan to determine if the treatments did any good, then he will decide if it is worth doing another surgery to try and get the remaining tumors. I would love it if he said something along the lines of "The radiation was more successful than we thought! Looks like the tumor is dead and we don't have to do any surgery." That would be sweet. The other possibility is he will say something like, "The radiation was successful, and has shrunk the tumor enough so I can go in and remove them." The worse thing that he might say is, "Hmmm... doesn't look like the radiation did any good at all. Not much else we can do now but continue to just wait and see..." That would suck.

That's it for now. Your thoughts and prayers are, as always, appreciated.

Kevin

HIPEC Procedure to Be Profiled on TV Tonight

Roni here.

Tonight's airing of Grey's Anatomy will be including in its story line the HIPEC (heated chemo wash) procedure that Kevin had in 2004, which saved his life.

This exposure is very exciting to us, as too many in the medical and insurance communities still say HIPEC is experimental, though it has meant the difference between life and death for so many with peritoneal/appendix cancers, and is now being explored for other types of cancer.

I hope that this brings increased awareness that results in better survival rates for many who are not aware that this procedure is an option for them.

The Fun Starts Again...

Yep, it's that time again. Tomorrow I go see my oncologist for a quick checkup, and tumor markers. Then Tuesday, it's time for my first radiation treatment. I'm a little nervous, but have been told that the side effects should be minimal. That's what I'm hoping.

The radiation treatments will be 5 days a week for 5 weeks. Supposedly it will only be about 20 - 30 minutes from start to finish. I'll kep you updated as things progress.

On a positive note, Roni and I had a great time with my family in OR during the Christmas holiday. We had enough miles (had to buy a few) to fly first class, which for tall people like us, made the cross country trip much more comfortable.

We left Elke with a friend in Philly who took great care of her (thanks Keri). And we were very glad to see her after a week. She was very glad to see us too. :-) We sure did miss that little nudnik.

Testing

Being the geek that I am, I am trying out the BlogPress app for my iPhone to post to my blog.

Kevin

- Posted using BlogPress from my iPhone

I Got Me Some Tattoos

No, no Harley tattoos. No Air Force tattoos. None that say "Mom", or "I heart Roni".

Just 5 simple dots that show the radiologists where to place me when it's time for radiation.

My radiation treatments start Jan 5th, and my last one will be Feb 8th. I'll be having them 5 days a week, for 5 weeks.

And the bad news is, the Doc tells me it's not going to make me bigger and stronger like in the movies from the 50s and 60s. Bummer.