First of all, the bad news, mainly because I want to end this on an up note.  One of my chemo buddies from when I started, Chip, passed away this weekend.  I just found this out tonight.  It really bummed me out, because Chip was always somewhat of a ray of sunshine at chemo.  He was always upbeat and smiling and never thought negative.  He helped organize a charity event that I know raised a LOT of money for City of Hope this past weekend and when it was ready to launch, he wasn’t healthy enough to attend.  I was able to go, and talked to both Chip’s mother and sister, who were proud of the turnout for the event, but saddened by Chip’s inability to see the fruits of his labors.  R.I.P. Chip, you inspired me.

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!

We went down to San Diego last week to investigate a new treatment for Jeff.  It sounds very promising and Jeff seems to be a likely candidate.  It is called SIRT Spheres.  It is done very similar to an angiogram.  Jeff would need to go in and have dye injected through the groin to inspect the arteries in Jeff’s liver.  They have to be able to tell where the arteries go.  They can block off some arteries to the stomach and intestines, but they can’t block the arteries going to the lungs.  The lungs can’t take more than 20% of the radiation so if more than that would go into his lungs, he would not be a candidate.  There are two major arteries feeding the liver.  The portal vein and the hepatic artery.  For some reason, the tumors like the hepatic artery.  If Jeff’s arteries are good for the procedure, he would then go back to the hospital for another angiogram.  This time, they would inject small spheres of radiation through the hepatic arteries which would then seek out only the tumors, delivering the dose of radiation right into the tumors.  The procedure has been used for 5 years and so it is not new and has proven very successful.  The doctors were excited to see Jeff because most of the patients that they see are in their last stages.  We have talked to Jeff’s oncologist and he is also on board. 

 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.

Sorry I haven’t been writing again, but life has caught up to me again and I will, therefore, be writing just a quick note to let everyone I know that I am alive and still kicking. I haven’t been sleeping well the last few days, and it’s starting to catch up to me, so if things don’t make sense to you now, read again next week, and I’ll probably have things fixed and legible.

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.

OK, I’m not even going to apologize for being deliquent for not writing lately, since I’ve been dealing with issues for a while.  Even some one without a job gets busy once in a while.  Honest.  I suppose I could have made an effort to update this, but the truth is I really didn’t want to.  That’s what I’m going to write about today.  No glossing over bad side effects, or bad anything.  To be honest, there hasn’t been much to be happy about the last few weeks for me, and I’ll get to that too.

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!

Jumping jeehosephat! I found out why I’ve been having all these issues with my healthcare providers at Kaiser.  Apparently, when you’re given a Stage IV diagnosis for any type of cancer, they treat it as if you were in the terminal stages and the only thing they can do for you is make you comfortable while giving you the medication you need to prolong you life as long as possible.

 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.