Back to Work?

Well. Last week Rob worked half-days. He says that he is doing well. So, when he falls asleep at 8 pm - I tend not to believe him.

Yesterday and today he worked a full day. We shall see how early he passes out at the end of the week.

Does anyone want to take any bets?

Someone gave me a great idea to change the blog name (thanks, Rustin!), since Rob is not going to receive chemo. His idea was:

breathlessinsaltlake.blogspot.com

Another idea is:

lobelessinsaltlake.blogspot.com

Does anyone want to put in their two pieces?

Good News & Markers

We've got some good news and some good news...

Rob's CT came back clean! See! No sense in worrying, right??? (We shall see how well I am doing before the next scan in June.) The report was hilarious: "There is evidence for prior right lower lobe and right middle lobe resection." Really? What gave that away?

The other good news (or bad?): Rob does NOT have the EGFR marker in his tumor. By the way, if you are interested, the tumor was sent to the University of Colorado Health Sciences Center. The actual wording was: "This tumor expresses EGFR weakly by immunohistochemistry and is FISH negative. No predictive mutations are identified. This tumor would appear to be unlikely to respond to EGFR blockade." EGFR blockade is the Tarceva (not having to take that is the good news, or if you are thinking the other way, not having to take that is the bad news).

If you are wondering what FISH is, it is not an underwater thingy that has gills and swims constantly. It is "fluroescence in situ hybridization" which means it is a process which looks at the internal structure of the cell.

So, we have made the decision to not have adjuvant chemotherapy or radiation. At this point, Rob will have CTs every three months, CTs with a PET scan every eight months. The PET scan picked up Rob's second tumor whereas the regular CT did not. However, PET scans often have false positives - no need for the added stress of thinking there is a tumor when there really isn't. Regular CTs have a finer resolution.

Are you thinking, "Well, if the regular CT has a finer resolution, why didn't it show the second tumor?" Yeah, that was my thinking as well. Apparently, the tumor was too small to see on a regular CT, but it showed up with 'hypermetabolic activity' (after Rob was pumped full of radioactive isotopes). I guess anything will show up if one has enough radioactive materials in their body.

Rob hopes to start work soon, if his boss and co-workers will have him back : ). (Call me if you don't, just in case, so we can let him down lightly...) hehehe.

He would love to get back into school as well - provided he can make it through an eight-hour work day and an additional seven hours of school/study time. Can you believe the schedule he was keeping? Yeah, neither can I. It has been fantastic having him home and around (even when he was taking many, many naps).

We are so grateful for the many, many prayers, thoughts, cards, meals, and calls on our behalf. We love you and feel so blessed to have so many wonderful people in our life!

We are not safe yet, but we are glad that the surgery part is over and that there is no chemo or radiation in the near future. YAY!!!!

Blood Draws & Scans

Yesterday Rob had some blood drawn because of his upcoming CT tomorrow. He has to get his levels checked out to see if he has any elevated levels (cancer, radation damage to his kidneys - from his constant CTs).

Tomorrow morning he will go have a CT to see if there is any cancer present. Funny thing, I am not even concerned about it. I figure that there is no way that any cancer could show this early on. Right?????

Before, I would have SO much anxiety two weeks prior to the scan and I would call the doctor's office first thing the next morning to find out the results, feeling much better afterward.

Rob's work called and invited him to a lunch meeting (a man has come into town to discuss the current projects). He sounded excited to have something to look forward to and to get out of the house. He left not long ago - yes, he drove himself! It will be great for him - thanks, Sarah!

It's Not A Tumor - say it with an Austrian accent (think 'Kindergarten Cop')

Rob is continuing to gain strength. He still gets tired very easily, but tries his hardest to be fully functional while around the kids and me. That sounds really bad, doesn't it? Let me rephrase. He is very tired. If he doesn't take a nap, he wears out easily. He is generally ready to go to bed around 8:30 pm. I guess it will be easier for him to retire at a decent hour next week with the arrival of Daylight Saving Time.

Today he played "Phase 10" with Gabrielle - he told her that she was just like her Mom (that's me). She said, "Thank you!" Yes, she beat him at the game, just like I do. That was the highlight of my day!

My boss, Brent, heard back from his colleague at MD Anderson. Brent had outlined Rob's history, surgical, and pathology reports and other necessary information. This was the colleague's response:

No additional advice internally. It is as I suspected. No additional benefit from adjuvant chemotherapy.

Brent pointed out that the key phrase is "No additional benefit from adjuvant chemotherapy." He assured me that just because they are saying 'no additional benefit...' does not equate a death sentence. Well. That's good. Not quite ready for that juncture in life. He also said that doctors will often throw everything in the book at you to get you better - because they can - not because it is best for you.

At some point, we have to decide whether the treatment outweighs any possible benefit.

I have these nagging thoughts in the back of my mind, (I wonder how many people would feel this way, if they had to make this decision) that if we do nothing, it implies we are giving up, giving in to the cancer. Analytically, I know that by just being seen and having scans it does not mean that we are giving up. I just know how nasty the treatment is and what statistics are for another recurrence, etc.

We still have to wait for the tumor to come back from Denver (or at least the report - do you think that they will stick the tumor in an envelope and mail it back to Salt Lake? Hmmm, think on that. FRAGILE - do not bend, do not squish.).

I know, from watching Rob, that chemotherapy is an ugly beast, just waiting to take hold and consume its prey. It is awful. I think that he is tired now. Right. Chemotherapy exhaustion is just as bad, if not worse. Not to mention the side effects.

So, what does that mean? Basically, MD Anderson doctors are giving us the same information that the Cancer Review Board at Intermountain gave us. They just don't have enough data, enough science, to really make an informed decision to pass on to us.

So, we wait for the tumor.

While waiting, you could read the following story: Rob could have a worm in his lung instead of a tumor...THAT would be funny!