Saturday, January 30, 2010

The biopsy.

This time my biopsy went MUCH better than the last one.

The staff in the pre-op area was terrific (most the same as last year). However, darling I.V. Student needs a little more practice to build her confidence. Poor thing! It took her like 5 minutes to select a vein in my hand to work with, she was so careful and delicate, she had the IV in... and pushed again! POOF! The vein went flat! She was a mess when they sent her to the next victim. She got a really good vein on the next victim... it was like splattering all over the place.

I got wheeled over to radiology and most of that staff were folks that I saw last year.

The doctor performing the procedure was very open to questions and very sympathetic to my anxiety over my last experience. He talked me through how it would go this time, and it sounded like it would be at least tolerable.

My RN juiced me up with the "good stuff" and we began. A local was poked into my belly, right below the tip of the breast bone. Not between the ribs this time. And it felt like a bee sting. Then we got started. A little pressure as the guide needle was inserted, and that was it! WOW!!! After two pushes and two pictures to check placement, we went for the third push, that one caught my attention. The doc stopped pushing, got me another hit of pain killer and we went again.

It took three attempts to get a good sample for the pathologist, so between each sample, the RN and I chatted it up. She was great!

Finally, we got a sample, but post-op was filled up. So I got to wait in the CT room and everyone came in from time to time to chat a bit.

Then I got wheeled to post-op and got some water and some graham crackers. Man! I didn't think graham crackers to taste so freakin good.

So, the nice thing about this visit is that ...even though I ache a bit, my morning yesterday was not spent with me screaming, "Oh My God!", "Holy Smoke!" or making comments about my staff's questionable ancestry... or a doctor telling me, "I'm sorry Mr. Carman, I know it hurts." We went in, we knocked it out, and I came home.

That's the way it should be done!

Wednesday, January 27, 2010

A long winded update.

Here's what got covered at the most recent appointment with the oncologist.

Basically, we're doing the biopsy to determine IF the spot the surgeon pointed out on the CT is indeed cancer. If it is cancer, then, is it the same cancer or a different one.

The oncologist indicates that any wide variety of things could cause the CA 19-9 to climb like it has been. He indicates that there is a 10% + or - margin of error on both a PET scan and a CT scan. He indicates a PET scan can show a false negative, but it CAN show cancer. He indicates that a CT can show a false positive for an image of something being on another something that may or may not be cancer, but a CT CANNOT be cancer positive.

With all of that in mind, the oncologist reiterated that the PET scan was negative for cancer as determined by the radiologist. He indicates that the radiologist is top notch in his field with a number of years analyzing PET/CT scans. He (the oncologist) is confident that the PET scan is negative (keeping in mind the 10% plus or minus).

The oncologist indicates that a number of things can cause a CT to throw an image off, or produce inaccurate images. One example he gave was the metal sutures that are still in my liver. He described that the sutures can cause a scatter effect of the radiation during the CT scan and might provide a false image in the area of the surgery, in this case the porta hepatis.

SO, after all of that, we go with the biopsy to determine for sure that this is indeed cancer, determine that it's not scar tissue, a spot of blood, a benign piece of junk just hanging out... that kind of stuff.

My best guess here is that the surgeon may not have even looked at my PET scan disk that I took and perhaps made an educated diagnosis based on my climbing CA 19-9 and the possible something near my liver and in my lower left lung from the most recent CT scan.

Now... about the lung stuff. In multiple CT scans throughout this "journey", these spots have appeared. In each case, they were interpreted as "calcified" things. The oncologist indicates that something can either be calcified, or they can be cancerous... however, something that is calcified cannot be cancerous. Ok... good for the lung issue.

Now, where do I go if I pull up a positive on the biopsy?

The oncologist indicates that cancer cannot be "cured" by chemo. That surgerical removal is the only way to have a chance to beat it. He indicates that chemo will kill cancer cells, but not cancer. To illustrate his point, he made a number of dots on our note paper with his pen, and also drew some odd shaped circles. Now, he demonstrated with "X" marks that the dots could be a cell, and that chemo would kill that cell, but not the circles. So the dots can be killed with chemo, the circles have to be removed.

Ok... whew this is long....

The next flavor of chemo, IF we decide to go that route, will be Cisplatin. A really nifty cocktail that causes life long side effects. Some of those are nerve damage, kidney damage, electrolyte disorders, nausea and anorexia.

As it stands now, until we get results from the biopsy, we are not going to do chemo. The oncologist's stand on that is he won't do something just to be doing something, especially noting the side effects of cisplatin.

Radiation is not an option. This is because the liver is not a strong as cancer and radiation would destroy the healthy liver before the cancer.

So, I was directed by the oncologist to begin looking for a surgeon who will do a re-resection. However, he indicates that it will be tough to find a surgeon who will do this because of the location. (another nifty picture detailing why).

I've set up an appointment with my surgeon again to get a consult on the re-resection. If he doesn't with to chance it, then the concologist does know one surgeon in Los Angeles who may be interested in giving it a go. As I understand it, this surgeon is a liver specialist like my surgeon at Stanfordr.

If we can't find any surgeon who is willing to risk this surgery, then we will begin looking into clinical trials.

So, there you have it!

Friday, January 22, 2010

I"m sick of lemonade...

When life gives you lemons...


RIGHT!!!!!


Thursday, January 21, 2010

Oh great!

More fouled up news on the cancer front.

My CA 19-9 marker is now at 519.
Normal is between 0 and 35.
I was only at 350 something back in March before they sliced me open.

*sigh*

Gonna be a long night while I try to sleep tonight.

Wednesday, January 20, 2010

Finally! Some information.

Stanford phoned me this morning. My RN there apologized for being so delayed in returning my call. My thought was, "hmm... you were off yesterday, you've been back to work for 5 minutes and that's slow?"

The call went very nicely, and she gave me the following information.

Since we (I) have 2 new spots on my left lung, AND since they are down low on the lung, AND since that portion of the lung touches the liver from time to time, AND that area that it touches is near the cut section, they want to confirm from the porta hepatis biopsy that it is the same cancer and not a new one. This was a surprise to me because what I've read is that once you've been diagnosed with one cancer... it's your's for the duration regardless of where it pops up next.

No biopsy on the lung, because that isn't practical. Hmm... but getting a flag pole jammed between your ribs is? Perhaps I need to be grateful they're doing the liver biopsy and not the lung?

The final part of the call was an apology from the RN that no one told me what the devil was going on. In her words, when two physicians speak and come to an agreement on detection methods or treatment, the physician making the arrangements (my Chico oncologist) would be the party to notify the patient.

I'm still not happy with this new fella, and I will be letting him know on my Monday appointment. The hard part will be to let him know in a manner that is more of a critique rather than a personal attack. But I'm so freakin good at the personal attack... I can do it without even trying ;-)

Tuesday, January 19, 2010

Where oh where did I leave my red Star Trek shirt???

Well... more freakin good news. Not only did my local oncologist miss the diagnosis from the PET scan (surgeon at Stanford says that the two items on my lung were PET positive) but now I have to go through another biopsy.

This biopsy is a CT Guided, Fine Needle Aspiration of the Porta Hepatis. The English version of this medical techno-babble is "A Flag Pole Jammed Between Two Ribs to Suck a chunk of your body into a small jar". The target, porta hepatis, is the area where one of my lymph nodes used to be. Right close to the liver. Actually from pictures I've seen, right against the liver.

The last time I did this, it was quite possibly the greatest amount of pain I have ever experienced. This time when the RN asks if I want something for the pain, my response is going to be , "You bet your ass! All of it! Give me everything!" There's got to be a way they can do this with me asleep. I'm going to find out for sure.

I guess you can tell that I'm not getting much sleep again. Being in limbo really sucks. I don't have any information and my new oncologist seems to me to be throwing shit at the wall to see what sticks. Frankly, why the biopsy? Don't we already know that I have cancer? Sheesh. My belly is a mess, my brain is a mess, I'm a mess.

I think I'm going to look around and see if I can get into another oncologist who is more "on board" with what's going on... someone with a little more interest in what's going on with me and what's going on with my treatment.

Saturday, January 16, 2010

Well Shit!

Well guess what? Our little trip to Stanford was ended with shitty news. First indicators are that the cancer is back. My elevated CA 19-9 marker plus the results of this last CT scan show that I have two small images in my left lung (each smaller than a pea) and one in the area near my liver where they removed the lymph node in the last surgery.

My surgeon is in contact with the tumor board, specifically a Doctor (Sue)... I've already forgotten her last name. They are going to discuss "what's next" for me and make recommendations to my new doctor here in town.

Surgery isn't an option in this case, because though he could easily scoop out the current offending little shits, it won't take care of others that will come up in the future.

Since the Gemzar didn't appear to work, I guess we'll be looking at other wonderful flavors of toxicity. Great! Just Great!

I'm physically up to another round of force fed toxic drink mixes... but I just don't know if my mind is up to it. I'm going to have to reach really deep to find the balls to go on with this... and I will... but my heart just isn't into it right now.

I dropped the CDs with my scans on them to my doctor and hopefully his office will call in the coming week to discuss my next battle plan.

Part of me is scared out of my wits, the other part of me is just in shock.

Now ... where did I leave my cool red Star Trek top?

Thursday, January 14, 2010

First trip to Stanford this year.

We're heading out to Stanford this afternoon. Do a CT scan tomorrow morning and follow up with the surgeon, Dr. Vissar, mid-morning.

I'm feeling really good physically. I've started watching what I eat a lot more closely. It's my opinion that when you need 3 strong men and a "come along" to button the top fly of your jeans, you've let it go too far. I started tracking my calorie intake as well as my physical activity. I even started a "beginner" running program. But I'm finding that my knees, at near 50, don't care much for the pounding. So I'm going to have to find another method of burning the calories.

Hopefully, tomorrow, we'll get out of the Stanford clinics soon enough to stop by Jelly Belly and see a pair of dear friends. Its been WAY too long and I miss them.

I'll post how the trip goes maybe tomorrow evening.

Saturday, January 9, 2010

One month out from chemo.

Yesterday was my first month out from chemo. Good things are going on. It seems the fog is lifting from my mind the longer I'm away from chemo. I'm thinking better... a little better.

No jury duty for Monday! Yay!

Stanford for a CT and and a follow up with the surgeon on Friday.

That's about it.

Oh yeah... the Star Trek Exhibit photo...





Sunday, January 3, 2010

Time won't give me time...

Thought I'd better drop in and write something. It has been a while.

I've been away from chemo now for 3 weeks. I seem to be working the effects out of my system. Daylight, for example, doesn't hurt my skin when I go out into it anymore. I'm not as tired. I'm able to sleep past 3 am.

I think my brain is beginning to work properly again, to some degree. I think it's recharging... I keep having the most vivid nightmares. Well, maybe not nightmares, but bad dreams. And such detail too. While I was on chemo, not many at all.

The hard thing I'm dealing with right now is the concept of time. I can't seem to grasp that... it's like three weeks just go by in a blur... and I can't recall things that have have happened or things that I've said... drives me bonkers!

Folks say it'll take 6 months to 2 years to get it all back. I'm a little on the greedy side... I want it now! ;-)