His oncologist thought since he was doing so well, it was time to take a chemo break and go check out SIR-Spheres.  We  had checked into it earlier and were impressed with it.  At first, they were thinking, he would not qualify since he was doing so well, and his PET scan showed no activity with the tumors.  However, the special MRI that they do in San Diego showed 13 tumors in his liver with a small focus of cancer.  So,July 8, he had his first treatment and seems to be doing well.  Shelly ran right out and bought him a shirt that says “Caution, I have received radiation therapy. If you can read this, you are too close”.   He hasn’t had any problems with the procedure other than fatigue and his blood pressure has gone back up so he had to go back on meds for that.  He has to have 2 blood tests two weeks apart (just took his first this week) and then an MRI in 6 weeks.  The blood tests are to show his liver function.  If that stays normal and the MRI shows progress with the treatment, they will treat the other side of the liver.

So, we will keep  you informed.  If Jeff doesn’t, then shelly or I will.  Hopefully this will shame him into getting back into the swing of things.

 Nancy 

When I got myself the heck away from Kaiser, my CEA count was right at 650.  After something like 5 or 6 treatments, that number has been knocked down to 14.5, and anything under 5 is considered normal (but hey, when have I ever been considered normal?).

That means that we are going to go ahead with seeing both the surgical oncologist and the radiation intervention oncologist (say that ten times fast) with plans to do something over the summer.  That means, at the very least, that I just may be done with chemotherapy until July at the earliest, and possibly the entire summer. We shall see, but I’m really hping to be able to take a break.  This stuff is driving me nuts.

The next Relay For Life is on May 15th, and I’d really like to see everyone there.  It’s at the Quakes Stadium in Rancho Cucamonga at the soccer fields, and should be a lot of fun.  It had better be, we’ve spent a lot of time trying to make it so.  I’ve been speaking at several relay functions and at City Council meetings trying to do my part.

I’m really not sure what else to say here, so I’ll keep it simple.  Take care and have a good day!

In a complete 180 degree turn from that info, I found out that my cancer markers, which started out at 860 two years ago, dropped to 77 at one point, then went back up to 648 in January, has now dropped yet again.  After four treatments, my new cancer marker number is…….(prolonged drumroll)……..36.  That’s right, 36!  I’ve been doing a happy dance all freaking day!  I talked to my nurse practitioner and she told me that if my numbers get down to single digits (everything under 5 is considered normal) and stay there for a while, I might be considered to be in remission.  Here’s hoping!

 They want to give Jeff a few more doses of chemotherapy and then he would need to be off of chemo for 2-3 weeks before the procedure.  We are looking at May for several reasons.  It would give Jeff more time to do the chemo which also seems to be working (and HE IS OFF OF ALL PAIN MEDS, just an occasional breakthrough pill, Kaiser had him on 60 mg of Morphine morning and night!), but I digress.

The bad news was Medi-Cal will pay for the procedure, but not the medication.  The medication is made specifically for Jeff and comes from Australia or New Zealand (We were told both places, one by the nurse and one by the Doctor)  And the bad news is, the  medication costs approximately $10,000 and Jeff would need 2 doses, one for each side of the liver.  There is a 5% chance it could cause liver failure so that is why, they only do one side so that they don’t damage the whole liver.  So, on May 1, Jeff becomes eligible for Medicare (we already have his card) and Medicare will pay 80% leaving us with approximately $2000 for each procedure—still a stretch, but we’ll work on that.  We are SOOOOOO excited.   The doctors say if we can get his liver cancer under control, the colon is no problem.

Any way, just needed to share the news with everyone.  Sorry it took so long, but we all got sick starting the day back from San Diego—–Maybe it was the shock.  Anyway, Rich and Shelly are back to work, I was the last one to get sick so not quite over it yet, hopefully tomorrow.  Jeff just got a mild case, I think most of his problem was weaning off the pain meds.  It was very necessary since he slept through the whole visit in San Diego which is why I am writing this since he can’t remember anything from that day!

In case you haven’t guessed, this is Nancy,  Jeff’s mom, writing this.

On the family side, I talked to my cousin who is deployed overseas in Kuwait and he states that he’s just waiting for the boat to show up and take him home.  He should be back around the first week of April.  I hope so, I miss that clown.

Anyways, like I said, just a quick note to say I’m still around.  I’ll write more in a few days. I promise.

First off, I’m depressed as hell and really have been since at least mid-October.  I’ve known I’ve been depressed since at least midway through my last hospital admission and lately, I’ve found myself not really caring about a damn thing.  It’s not like there’s much I can do about it right now.  I’ve submitted withdrawal papers to Kaiser to remove myself from their insurance system.  I don’t have a deathwish, but they seem to insist on trying their best to kill me. 

My retarded oncologist has been feeding me a steady overdose of chemotherapy meds ever since I’ve been going there, so that probably explains at least some of the worse effect of my latest treatments, and probably some of the depression, but that’s not everything.  I can’t go see a shrink, because the Kaiser answer is to throw pills at it, and I’m not going to take all those freaking pills.  Furthermore, I can’t go to an out of system doc, because SSDI has taken that ability away from me. 

I don’t sleep very well, because I’m either too hot or too cold, and it flips back and forth sometimes every few minutes.  Plus, I keep having disturbing dreams, usually of the sort where I’m bailing out the Titanic with a soup spoon.  Get the idea?  I don’t want to drug myself to sleep every night, but all the meds I have to use “as needed” every eight hours or so?  I’m taking them every day, and I’m probably cheating a little bit on the time so I can overlap some of the feeling from them.  Maybe that makes me a junkie or something, but at this point, I really don’t give a rats ass.

Now, for those of you who wonder why they haven’t said anything, or why they haven’t voiced concerns about this before to anyone, I’m not sure my family or Sarah even knows.  I’m sure they all think they know something is wrong, and may even have an idea of how I feel, but they probably think it’s some kind of funk I’m in and I’ll probably work my way out of it.  I’m not sure, maybe they’re right, but I doubt it.  It’s not like I’m the most approachable human on the planet either.  I’m grouchy, irratible, stand-offish and bottled up.  I keep everything to myself, I stay in my room most of the time, I don’t want to go anywhere or do anything, and I don’t have the money to do anything once I get anywhere.  And that pisses me off.

The one thing that would make me happy right now is work, and the problem with that is that there’s only two things I can think of that I’d like to do, but one I can’t physically do and the other, I probably don’t have enough knowledge to perform at my desired level, because I’m beginning to think that the education that up until a while ago I was so proud of is now starting to look like the half assed version I thought it was before I decided to back to school ten years ago.

The sad thing is that the people who do care about me and want to see me get better are great, but there are others that I feel should feel and want the same thing for me and maybe could help in that goal, but don’t, and I’m not sure if I’m saddened by that fact or pissed off, but I’m starting to think it’s both, and I’ve about written them off forever.  And yes, that means they get no Christmas card from me.  I’m thinking of a body part.  It’s white, Irish, pasty white right now, and a bit diseased.  I think they should kiss it at high noon in my driveway.  Which will never happen, because they’d never come, and I’d refuse to cooperate with them anyway.  Catch-22. 

You know, this is starting to come out as a rant, and I really didn’t intend to do this, but this is what happens when I uncork bottled up feelings.  they all come out.  Don’t think at all that I’m talking about any of you folks in that last paragraph.  Unless I specifically mentioned you by title or name, no one else I talked about in this today would be reading it anyway, and they know who they are anyway.

Back to the depression thing.

I know all the symptoms, I know all the signs, and I was a fairly knowledgable healthcare professional in my day, but I’ll be damned if I can figure out how to get out of these feelings.  Especially without pills.  Of course, I think this society is too damn pill happy anyways. Don’t like losing your hair? Take a pill.  Don’t like your boss? Take a pill.  What’s worse is that some of the side effects are worse than the thing you’re taking it for.  Or, if it doesn’t work, enhances the symptoms you’re taking it for?  Some of those anti-depressants?  Make you have intense suicidal thoughts!  OH YIPPEE!!!

Anyways, That’s all I’ve got for now on that.  Now, I’ll go over the medical stuff that’s been going on.  I went to see the doc in San Diego, and he confirmed what I thought , that basically having to switch to Kaiser slammed shut the small window of opportunity I had to take a big bite out of this cancer bug immediately.  You know me.  I’m not one to waste time.  That’s especially true now with this stupid tube sticking out of me.  It’s starting to hurt again, but it’s hard to clean around, catches on everything, and is hard to hide.  I have to sleep with it attached to my shirt, which I don’t like wearing when I sleep anyway, so that probably has something to do with my sleeping problem anyway. But I digress.  If the primary source of the cancer is the colon, I want the damn thing out of me.  Now.  The liver?  I want to fix it if possible.  If not, that’s fine too, but I want to explore all my options in a timely manner.  I’m tired of hearing about exploring my options in six months.  I was told that six freaking months ago!  The only doc I trust at Kaiser now was the one I had the least amount of faith in when I started there.  The rest of them are a bunch of marginally acceptable docs.  The smart ones are spineless, the ones that I see as an outpatient are morons, and the ones I see as an inpatient are either arrogant, stupid, uncaring, or all three.

So I sent a formal Letter to Kaiser stating that I wanted released from their care immediately.  They said fine, then send me a letter three days later saying that for them, immediately meant a month or so, because my case was not one of life or death.  Anybody wanna tell me where a good point to check myself into a nut house would be?  A psyche eval is mandatory whenever some one becomes a danger to themselves, a danger to others, or so mentally incapacitated that they are no longer able to care for themselves, which is also known as gravely disabled. I’m not the last one, and I would never kill myself, but whenever I see a Kaiser ad on TV, I get pissed off, know what I mean?

Until this whole getting out of Kaiser thing is taken care of, I’m stuck, but I’m planning on going back to  my former oncologist, who actually seemed to know what the hell he was doing.  Makes me feel so much better just thinking about it.

And now for the random fact of the day:  Volcanologists study volcanoes.  How they form, what makes them form, how to counteract their effects, how to predict when they’ll erupt and what effect it will have on the world’s climate when it does.  1887 saw the eruption and complete destruction of the volcanic island of Krakatoa in the South Pacific.  It was the loudest sounds ever recorded and created what was known as the “Year Without a Summer” because the ash circled the globe and cooled temperatures up to 20 degrees in some areas for almost two years.  Yellowstone is a volcano type called a Super-Caldera, because it has a magma chamber directly below it twice the size of the volcano above it, shaped like a caulderon.  The last known eruption was 640,000 years ago and was partly responsible for the formation of the Great Lakes.  Scientists currently believe it’s approximately 100,000 years overdue for a major eruption. Happy camping!

 WHAT BULLSHIT!

I spent two weeks in the hospital convincing those knuckleheads that I was NOT dying within the next twenty minutes and needed better care than I was receiving.  Needless to say, it was a losing battle.  What makes it worse is that the only provider who is willing to fight back with me that I’ve talked to since I’ve gotten out of the hospital is my internist, who is probably the least qualified individual, but it’s something, at least.  I spent an entire day with him, running tests, watching him play phone tag with other doctors and himself getting frustrated at the lack of assistance he was getting from his own colleagues.

The day before yesterday, I received a call from a colorectal surgical specialist’s office to make an appointment with him to get in there at the earliest oppportuntiy, which I found out wasn’t until the first week of February.  I told them I’d have to talk about that with my family, and asked if I could call back later.  By the time I called back, they had been closed for ten minutes and I resigned myself to call back the next day at 8:30 am (that’s right, I was going to awaken before sometime in the mid-afternoon!) when they called me first and set up an appointment for the very next day at 9:00 am.  Don’t ask me about the sudden rush to see me, and I’m not one to look a gift horse in the mouth, so I prepared to see this doctor the very next morning.

First, I discovered that he wanted me to have two enemas before I went down there, so I had one the night before, and that ended up keeping me awake all night long, looking forward to the second one.  In some ways, there was no difference in the two enemas, but to me, the second enema felt far more invasive and energetically draining.  So we left the house this morning at 7am.  All five of us:  Dad, Mom, Michelle, Sarah, and myself.  When I got checked in and settled in to his new hospital, I was called back to an examination room, where this specialist told me to relax in the most uncomfortable position I have ever managed to get my body into, but then proceeds to shove his arm up my nether region (i.e., my butthole) seemingly clear up to his shoulder, all the while telling me he’s sorry and that I needed to relax.

When he finally lets me up, he tells me to get back into my clothes and go to a different exam room with my family and he will let us know his thoughts on any possible procedure.  When he came in, he rather circumspectly stated that the only way he would take out my colon would be if my diagnosis was something close to as perfect conditions as was possible.  So on the bright side, this doctor helped me make a very difficult decision.  I’m going to do whatever it takes to remove myself from this HMO and find another way for me to get treated.

I’ve had to switch doctors due to my employer’s insurance changing plans on me.  Over the last month, I’ve started treatment at Kaiser (don’t get me started on that again.  I’m going to be polite about that.) and am under the care of a doctor that seems to know what he’s doing.  I’ve been busy undergoing treatment and testing to bring them up to date on my condition, because apparantly having all of my records of treatments, CT scans, PET scans, x-rays and MRI’s since my diagnosis doesn’t count.  I missed six weeks of treatment because some paper pushing bureaucrat didn’t realize that no treatments equals no surviving.  Being polite, I won’t say anything about this person other than I’m glad they are no longer in a position to do to anyone else what they did to me.

Once I’d gotten my treatments back on track, they kinda kicked my butt a little more than I was expecting.  This could be because I’d been off treatment for so long, but maybe not.  Who knows?

Today, I went to see a surgical oncologist within the Kaiser system who specializes in liver resections.  After hearing what he told me (more on that in a second) I have a decision to make.  Basically, the liver is made up of eight sections.  To do a liver resection, there has to be two sections of liver next to each other that can be left alone and allowed to regrow.  I have two and a half, which by my count puts me in the marginally possible range.  The surgery would be done in at least two parts, and possibly three.  First, the damaged parts that were to remain would be trimmed off, leaving only the healthy tissue to remain, and the arteries/veins leading to the right side of the liver would be blocked off, beginning to kill off the damaged portion of the liver and forcing the healthy sections to grow far bigger than is normal, allowing those (two, maybe three) sections to take over the entire normal liver function.

This seems to me to be a high risk/high reward surgery.  Once the liver is resected, the colon will be removed and I will receive an ileo-ostomy (no bag).  If it fails, I’ll be in liver failure and, if not able to be treated with medications,  my body will begin to slowly shut down.  If this surgery works, it could cure me.  The numbers given to me were not good, but my case is not typical.  Most of these numbers were based on patients older than me who were in poorer basic health.  The best study was done on 700 patients, and after ten years, only about 30 were still alive.  However, most of these people were 60 years or older and that study just counted who was still alive, not what they had died from.  If they died in an accident or had a heart attack, they didn’t differentiate, so they might not have died from cancer.  Don’t you love detailed medical studies???  This is the information that you get when you  have to make a life or death decision.

So, I’m heavily involved in the Relay for Life again this year, and we still need volunteers, so come on if you’re interested.  As part of my duties with that august body of volunteers, I’m informing everybody of some hard numbers, since everyone can relate to those.  The national average of the American female population is approximately 52% (that’s white, black, green, polka dot, chartruese, everyone).  One out of every three women will be diagnosed with cancer (colon, breast, thyroid, whatever) and one out every two men (that’s right, HALF! 50%!) will be diagnosed with cancer in their lifetimes.  In a city with a population of 200,000 (hey, Rancho Cucamonga has about 200,000 people!), that equates to roughly 82,732 people.  By current mortality rates, out of that amount, approximately 24,820 will die.  What that means is that you WILL know some one who gets cancer, and you MAY know some one that will die from it.  Spread those numbers out to a national population of 300 million people, and that’s 75 million people who will die.  By contrast, the Centers for disease control in Atlanta, GA are declaring swine flu an epidemic, but swine flu is thought to pose a risk to only 20 million people nationwide.  Kind of sobering, isn’t it?

It’s been kind of hard to sleep with those types of numbers running around my head all the time, and it’s been a few days since I actually sat down and crunched some of those numbers.  All those numbers are almost ten years old.  Granted, the treatments have improved, which improves survivorship, but it’s still not that much better now.  Cancer is the second leading cause of death in the United States, behind only car accidents in numbers.  It’s just something to think about when you have time. 

Once I spoke with my doctor in San Diego, he reccomended the colonoscopy to rule out a possible bleeding tumor (not that big a deal once they knew it was, but still had to be taken care of).  He also said that my continuing elevated CEA counts could be a result of the tumors in my colon and that once removed, my CEA counts could drop to normal levels.  I repeat the word could, because it’s not for sure if that’s the cause, and I won’t know what my count is until my next blood test, which could be on Monday or Tuesday at the earliest.

So, we scheduled the colonoscopy for today, since it was the earliest I could get in.  We stayed overnight, since it included four hours of preparation in which I had to drink a gallon of liquid that once the flavor packet was dropped in, tasted like pineapple flavored salt water.  (YUMMY!)  The result of this drink is to what the directions coyly refer to as cleansing out the bowel.  What it really means is you crap your brains out the rest of the night.  I seriously think I lost twenty IQ points last night.  Maybe thirty.  According to Sarah, it’s not something she would recommend doing in a small hotel room with only one bathroom.  One. Single. Bathroom.  According to both mom and Sarah, my getting up to go to the bathroom constantly kept them awake all night, and once I did fall asleep, my snoring kept them awake the rest of the night.  I, however, slept like a baby. (Right about this time, Sarah’s giving me the look of death).

Once in the surgical prep room (for some reason, sticking a camera up your hind end is considered surgery), we were told that the procedure would only last about twenty minutes.  An hour and a half after it started, I woke up on the table with a camera exploring places never intended for the human eye to see.  It wasn’t a pleasant feeling.  It downright HURT.

After the procedure was over, they brought Sarah and my mom back into the room and sat them down to await the results. The doctor who performed the colonsocopy (who would specialize in that all day anyway?) came in to explain the results. 

Now to the moment I’ve been building towards.  My first colonoscopy found multiple tumors and hundreds and hundreds of polyps.  Some of the latter were cancerous, and all of the tumors were.  This latest scope found only six polyps and one tumor, which were all removed during the procedure and retrieved for biopsy.  Needless to say, for once, I was speechless.  So was Sarah.  Mom kept repeating the doc’s words to make sure we both understood her.

So to recap, the last PET scan showed no active tumors anywhere, and the colonoscopy showed all the cancer except for one tumor was gone, and that one was removed by a two centimeter camera during the colonoscopy.  By the time we heard this, we were all crying and ecstatic at the same time, which is an unusual feeling.  At least for me it is.  I can’t speak for the others.

We expected the tumors to be smaller, especially since they didn’t register on the PET, but no one expected them to be GONE.  Now all that remain to do is something called a bi-phasic MRI, which I don’t exactly understand, but I was told it’s liver specific and shows much greater detail of the liver.  Depending on what that test shows, we may not have to do anything to the liver, but we still have to check it out.  Then, depending on the results of that, I may be off chemo for a while, in which I believe the plan is to do a colectomy, in which the colon is removed.  What the colonoscopy tells us is that I may be a candidate for something called an illeostomy, in which the colon is removed and the small intestine is attached directly to the rectum.  That would mean NO BAG (YAAAAAY!).

I don’t know what the treatment plan is from here, but I’ll let you know as soon as I do.

So we all ended up celebrating by going out to dinner tonight with some of the family and friends.  I told them there, and I’ll repeat it here.  I want to thank EVERYONE for their support during these last two years.  Your concern and your support over this time has really made the difference.  It’s kept me strong and helped me through the roughest of times.  Even though I’m not completely out of the woods yet,  I do think the forest is thinning out, and it couldn’t have happened without all of you. 

I started this website and this blog mainly to help myself while furthering others understanding of colon cancer and it’s effect on patients who have it.  I plan on continuing this blog even if I’m declared cancer free and don’t ever have another round of chemotherapy again, mainly because I want to continue educating everyone and raising awareness.

One more thing.  If you go back to my very first post, I said cancer didn’t have a chance.  I should now tell you that I don’t lie, and now I can prove it!

So we’ve been to Disneyland a few times because it’s good to get out and move around, no matter how bad you feel, and what’s better than the happiest place on earth?  So that covered a day or so.

I was going to write a blog letting everyone know how I’ve been feeling lately and compare it to how I”ve felt at the beginning.  When I started reading, it took me back through all the emotions I felt at the beginning.

My first few posts were very misleading to you all, but I apologize for that, since I was deceiving myself as well.  For the most part, I was displaying an upbeat cancer warrior that thought nothing could take me down.  Boy was I wrong!  I felt nothing like that, and within a few months, I was admitted to the hospital with a contagious infection known a C-Difficile.  I was in the hospital for a week and required large amounts of antibiotics, painkillers and two blood transfusions.  A few months later, I was sent to the emergency room for dehydration, where the doctor thought for some reason that  my blood was “hemo concentrated”.  This basically means that there’s too much of my painkillers in my system and it was making me drowsy, in addition to the dehydration.  Their solution to the problem was to slowly give me an injection of a drug called Narcan, which, while dangerous, effectively negated the drug from my system and would have made me far more alert than I was.  Unfortunately, I was given the wrong amount (too much) at the wrong speed (way way too fast), which sent my body into severe withdrawals.  My gums started bleeding, my body started to shake, and the pain was unbearable.  I now look to these two instances and realize that at those points of my life, I was right then the closest to dying that I have ever been.

So now, I feel that I must admit that up until March of this year, I thought I was just marking time until the end.  I had lost a lot of weight,  I was still unable to walk very far or even stand for a long period of time.  That’s changed.  Sarah recommended I look over these previous posts to give myself an idea of what exactly I felt like when I wasn’t feeling so good, then write about it.  It was a good idea, and frankly, reading those old posts made me feel that much better about how I feel now, on a day to day basis.

I’m currently eating like I did back in high school, although my energy is more focused into accomplishing things.  I recently became a full fledged Legislative Ambassador for the American Cancer Society- Cancer Action Network, or ACS-CAN.  This group contaians those who feel strongly enough to speak with various lawmakers and their staff, in order to express the American Cancer Society’s desire for certain Senate and Congressional Bills at both the federal and state level.  Raising money is good, but those research dollars must be focused into helping those battling cancer now and in the future.  That’s my goal, anyway.

I had a meeting Tuesday Morning with Dr. Lowy and his staff at Moore’s Cancer Center in La Jolla.  At this meeting, we discussed several options that were available upon certain medical realities being present.  One was Liver Resection, where they would cut out a section of my liver containing some liver lesions and allow a new, healthy lobe to grow in it’s place.  Another option was radio frequency ablation, which basically microwaves the tumor it’s targeting and kills the tumor like microwaving a tv dinner far too long.  From what I’ve heard from other’s who have had RFA (usually on other organs, but I must guess that the effect is the same) it feels horrible at first, like you’ve been burned all over, but that the pain eventually passes and you’re back to better in no time at all.  The last option involving surgery would be inserting an intra-hepatic infusion pump so that the chemo would be pumped directly into the hepatic artery.  Of course all of these require something called a bi-phasic MRI scan and probably a colonoscopy, because any invasive surgery is sure to include a colectomy, which is the removal of the colon.

We’re trying to get this happening soon, at least the colonoscopy, mainly because I’ve developed some internal rectal bleeding, which they believe is either internal hemroids or a degraded tumor that’s now irritating a vein in the wall of the colon.  Either way, it hurts and I’d like to get it taken care of as soon as possible.  Anyways, it’s getting late and I’m taking Sarah to see the Angels beat up on the Detroit Tigers, so we have a long day ahead of us.  Don’t do anything I wouldn’t do and behave yourselves as much as possible.  One of these days, I might even start taking my own advice.  LOL