I'm tired of being 1 in a Million

So it's not enough that I have to have a rare form of cancer, but I also have to have a case that does not act like it should. Part of that is good, part of that isn't.

Here's the deal. I have three tumors that were not able to be removed during my surgery in July. Two small ones are near the liver, but Dr. Loggie says they are in such a tight place that they have practically "painted themselves into a corner". He doesn't seem concerned about them -- they haven't changed in the two years we've been watching them -- and he thinks they will just sit there and stagnate.

The other tumor is in the mesentary, near the bowels on one side and aorta (blood supply to the stomach) on the other. During the surgery, Dr. Loggie saw it, but did not feel he could safely remove it. This is the one he is concerned about. It is growing, and left untreated, it could possibly cause an intestinal blockage or restrict the blood flow to the stomach.

During my consultation on Nov 4th, Dr. Loggie discussed an option that I have never heard being made by a PMP specialist. Radiation. Radiation is never used to treat PMP because the cancer is mucinous, and dispersed throughout the abdominal area. Using radiation to treat that is not very effective at all.

So why would Dr. Loggie suggest radiation if it is never used? For one thing, we know from the many CT scans I have had over the past couple of years, and from his observation, that this one tumor is localized. The problem is that it is growing little "fingers" at the outside edges that are reaching towards the aorta and bowel. This is one reason that Dr. Loggie was not able to remove it before. He felt certain that he could not get the "fingers" out as the margins around them are very narrow and too close to vital organs/blood supply. But no one has ever successfully -- to his knowledge -- used radiation on PMP, but he thinks that in my case, the radiation (along with chemo) could shrink the tumor and "amputate" the "fingers" enough to make the tumor operable.

Yes, that means another surgery. :-(

Since this is a treatment that is not used for PMP, Dr. Loggie was hesitant to say this is what "should" be done, but instead said it was something that could be tried. He said he usually prefers to give patients a recommendation rather than a "menu" of options, but this time, he is outlining the choices without a strong recommendation. Partly because while surgery could remove the threat this tumor poses, it could create other problems.

Here are the choices.

1) Do nothing / watch and wait. The good thing about this option is that right now I am feeling pretty good, and do not have any symptoms. The bad thing about this option is that if I get to the stage where the tumor becomes a problem, there is a good chance that nothing else could be done at that point. And there is no way to project rate of growth/timing of the tumor.

2) Radiation and Chemo, with another surgery following. The good thing about this option is that we are being proactive in attacking this tumor, with a better possibility of actually getting it removed. The bad thing is having to go through radiation, chemo, and yet another surgery. And of course there is the risk that comes with surgery. Since the tumor is close to a blood vessel, there is a chance of nicking that. There is also a chance of nicking bowel, which could also cause big problems. There is also a risk of problems from additional scar tissue and a chance that surgery could actually disseminate the currently localized disease.

The treatment would consist of 5 weeks of radiation. Mon thru Friday for about 20 mins a day. The chemo would be Xeloda, which I have taken before and is taken orally as pills. I have been told that there probably won't be many side effects, but we really won't know until I start the treatment.

3) There is also the possibility of doing chemo and radiation without the surgery, but that would probably just put off the inevitable.

Right now I am leaning towards the 2nd option. I hate the idea of yet another surgery and following recovery, but I know I can do it. I also don't want to do nothing, and then a couple years down the road get to the point where nothing can be done, and regret not having taken action.

It's not an easy decision to make, as there are a lot of risks involved. But I guess with cancer, there are risks with any treatment. You just have to pray that the path you take is the right one for you.

Your prayers for guidance and wisdom are greatly appreciated.

Kevin

Six Years Ago Today...

On Oct 9th, 2003, I was taken into the OR at St. Lukes Roosevelt Hospital for emergency surgery. 6 hours later, I was in ICU without an appendix, with an ileostomy and being pumped full of antibiotics.

The tumor on my appendix had burst, perforating my bowels, which made me septic. I think there were some in the hospital that thought I would never leave alive.

Five days later we were told I had cancer. Six days after that, I left the hospital to finally go home.

And the rest, as they say, is history.

Appt. with Dr. Loggie

The time has come up pretty fast. It has been about two months since my surgery, which means it is time to make an appointment for a follow-up with Dr. Loggie.

We will be going to Omaha Tuesday, Nov. 3rd, then will get a CT scan first thing Wednesday morning (Nov 4th), then see Dr. Loggie directly after. Hopefully he will have some words of wisdom concerning next steps of treatment.

Actually what we are praying for is that he will look at the CT scan and say, "Hmmm... this is weird, there's nothing there."

Elke

Yep, we got a dog.

Her name is Elke (fem form of Elkanah, which means "purchased by G-d"). She is a poodle mix (not sure what else, perhaps Bishon).

She is a rescue and was neglected.

For the most part, she is a great dog. Still a few issues with getting too excited, but we're working on that.

She has been good for me to help me get out of the apartment and go for walks, and to help me get out of this funk I have been in. Recovering from surgery, not having a job, etc., isn't necessarily good for the soul, but having a dog is.

And I'm starting to learn some lessons about being calm when things aren't going my way (i.e. when Elke wants to go one way, and I want her to go another). I know that getting angry with her does no good. Yelling at her does no good (I'm pretty sure she doesn't understand 99% of what I say). Being calm, and being the pack leader is what is needed (hat tip to Ceaser).

I'll be sure to post other lessons I learn as time goes on. Till then, this is Kevin, Roni and Elke siging off...

Questions on Yom Kippur 5770

For the last couple of years I have been asking G-d the same questions. Why did I have to get cancer? Why me? Those questions can also be translated to "What did I do to deserve this?"

Intellectually I know the answers, yet I still continued to ask. The answer is the same for all these types of questions, and it is the same answer all the time. "It just is."

I didn't do anything to deserve cancer. It just happened. There is no great cosmic conspiracy. This is not some form of godly punishment. It's just that we live in an imperfect world. Good things happen to bad people, and bad things happen to good people.

So today, on Yom Kippur, it is time to change the questions. Instead of why did this happen to me, I want to start asking, "What can I do with my situation to help others?" "How can I take a crappy situation and turn it to good?"

My prayer for today, and going forward is, G-d help me to ask the right questions. The questions who answers have the ability to change lives. Mine and others.

Amen.

Some Good News

Just a quick note to let everyone know some good news.

I spoke to my oncologist today to get my results from the tumor markers he had done about a week ago.

Just to let you all know, I have two main markers taken, CEA and CA 19-9. The normal range for CEA is between 0 - 2.5. The normal range for CA 19-9 is 0 - 35.

Right before my surgery, my CEA was 48 and the CA 19-9 was over 200.

After having my spleen removed, my CEA is now 5.3 and CA 19-9 is 42!! Both still slightly high, but this is the lowest then have been (without any chemo) in about 2 years.

Seems like the spleen was a big part of the problem.

As for my recovery, I'm getting a little better every day. Still not sure what the next steps will be. My oncologist has reached out to another medical oncologist and to Dr. Loggie for their opinions. When I know what is going to happen next, I'll let you all know.

For now, I'll let my body continue to heal, work on getting my strength back, and worry about chemo later.

Kevin

Post Op - Day 14

Two weeks ago, I was on the operating table having my spleen removed.

One week ago, we left Omaha, NE to come home.

As you know from previous posts, it was a fairly quick hospital recovery. The trip home was, thankfully, uneventful.

The past week has been one of resting, healing and generally taking things easy.

Yesterday, I had the drain pulled (finally). And thanks to Dr. Gruenberg for that. I must admit, I was very scared about the pain. I have had drains pulled before, and to say it hurt like the dickens, would be an understatement. I was all prepared for the pain, but amazingly, the drain was pulled before I was even aware of it. No pain whatsoever.

So what's next? I need to call my oncologist to discuss the use of more chemo. After we talk to him, I'll post to let you all know what we decide.

Until then, I continue to take things easy, and continue to let my body heal from the surgery.

I would like to thank all of you again for the support, love and prayers. The emails, cards, comments have all been wonderful. Words can never express how much all of those mean to us.

With love and gratitude,

Kevin

Doctor's Visit Update, and We Get to Go Home

Well, after another restless night of sleeping for a couple of hours, waking in pain, going to the bathroom, taking an oxycodone, then going back to sleep to start the process all over again, I finally got out of bed about 8 AM.

Roni was already up, and had already eaten breakfast. So while she was getting ready for the day, I went down to eat. I actually ate two slices of french toast, and had a half cup of Best Western coffee. One of the problems I've had in the recovery was getting my appetite back, but it is coming back, slowly but surely.

About 9:30 AM we headed to the doc's, thinking it might take awhile as I am walking much slower these days. But I did pretty well and we got there about 15 minutes early. The nurse came out and got me, took my vitals (all good), weighed me (about the same weight as a week before) and then it was only a matter of waiting for Dr. Loggie. He was in the middle of a consultation with a couple that we had actually met the night before, and spent a couple of hours with, just talking about having cancer. We were sure they getting smacked up the head with a very big reality stick, so wanted Dr. Loggie to take all the time he needed. In the meantime, the nurse gave us the initial pathology report and the surgical report to read. That's when we learned some very interesting (notice I didn't say "good"?) things.

We knew that the doctor had to leave some tumor, what we didn't know was that tumor contained signet ring cell. That is the most aggressive form of this cancer. We certainly weren't expecting that. This was the tumor that the doctor was able to see, but if he took it, it would require taking too much small bowel, which would mean a big decrease in quality of life. Fortunately, the doctor believes it is in such a place that it will not cause any problems for a long time.

Finally the doctor came in, and the first thing he asked is if I would be part of a research on signet ring cells in patients with colo-rectal/apendix cancer. He explained that they are learning some new things about how signet ring cells work, and how they are different in different patients. I think that because I had it before, and am still alive, he thinks my case is worth studying.

The other thing that we were hoping wasn't going to have to happen was more chemo. But it looks like since the tumor had invaded the spleen, and there was metastasis in a couple of lymph nodes (and because of the signet ring), it looks like chemo will be on the menu. We will discuss what would be the best regimen with my oncologist at home in a week or so.

The other disappointing part of the visit was that the drain they put in during surgery was still draining fluids, so they didn't pull that. It is difficult to take a shower with that, apart from the discomfort of having this tube sticking out of your stomach. Hopefully the fluid output will go down, and I can have it removed at my oncologist's office later this week.

So, that is the news for now. The cancer is still there, and again, the trick is not to let it take over our lives. We still have some uncertainty about what our future looks like. We have some disappointments, but we also plan on having some fun too. We plan on having some adventures, and good times with friends and family. We just need to learn how to treat the cancer, and still live life.

Getting Out of Hospital Today!

I'm so proud of Kevin. He summoned his "inner soldier", pushed himself all day yesterday and made huge improvements! He did the long hall walk 5 times yesterday and since last evening has been getting himself in and out of bed on his own and has been sitting up in a chair for most of his awake hours, which are increasing along with much greater alertness. I'll know when he's really beginning to feel like himself again when he asks me to hand over the laptop. I think it won't be long now.

They will remove his neck IV port this morning, and we move into the hotel this afternoon. Monday morning we'll go to the clinic where he'll have the final foreign object -- a wound drain -- removed from his body. After Dr. L. looks him over on Monday he'll let us know when we can fly home. Home!!!!! Our own bed. Our peeps nearby. And home cooked meals courtesy of Iain and April!! (A thousand thanks for that wonderful gift.)

We are so grateful for the prayers that have been answered. Dr. L. said the platelet count has come way up, reinforcing the hypothesis that the enlarged spleen was the culprit. Now we wait to learn whether it was the sole cause of the elevated tumor markers as well.

Now our prayers shift from a speedy, complication-free recovery from surgery to ongoing quality of life. We pray that the results of the pathology report will not mean additional chemo and that the inoperable tumors will at the very least stay stable, or better yet, shrivel up and die! And no more surgeries. Ever!

Happy to be the bearer of good news,

Roni

Over the Hump!

Looks like Kevin will be discharged from the hospital tomorrow. I'm not sure how long before we get to fly home, but it will be good to get out of here. It's a whole lot easier to get rest in a hotel than in a hospital. And hotels tend to smell better.

I can see Kevin getting stronger by the minute. Everything still exhausts him, but he's able to do more all the time. He went for three and a half walks yesterday. The half is because one walk got aborted after a few feet due to his IV pump battery dying, forcing us to return to the room for AC power. But Kevin insists on counting it! And he should; he still got himself out of and back into bed, and that’s the hardest part. Today he went for two pretty long walks already, with one more planned before bedtime.

His vital signs are good. He was taken off all IV completely until this afternoon, when they hooked him up temporarily to get a few more fluids into him. I imagine they’ll take the port out today or first thing tomorrow, and then he’ll be completely free of tubes.

He was graduated to solids foods this morning, and his digestive track is working again and good to go. (He he)

As always, thanks for all the emails and comments. I have a slew to read to him when he wakes up from his nap. And, we just got a mail delivery!! How exciting is that?!!

Roni