Deja Vu All Over Again

It’s that time…again. Back in a waiting room again with a large cup of contrast solution with the direction to drink it over the next hour and a half in preparation for getting into that big x-ray machine. Time to radiate my body hundreds of times to make slivers of pictures throughout and see how things look.

Thinks, you know, those aliens that have invaded my gut.

I’m here a little earlier than we had originally planned. Remember when I said I had four months? It’s been a little over three so we almost made it the planned time period. Last time when I wrote about having that unsettling episode of some bloody/bile filled urine? For a few weeks after that event I started feeling worse, and then even worse. For about 3 weeks my symptoms just seemed to be increasing, to the point I could barely make it through each day without taking some extra naps and just crashing on a couch to zone out.

Digestive pain has become a daily thing, pretty much after every meal. Lots of distention and pain even when I wasn’t really eating anything. My back is still out of whack, so that pain has been there as well. Throw in the additional fatigue and I pretty much have felt like you do the day before really coming down with the flu.

So yeah, it’s been a little disconcerting.

I met with my Oncologist a little over a week ago and we reviewed everything that has been happening along with a fresh blood scan. Nothing really stood out in the scan to indicate a specific problem. My bilirubin was a little elevated and my platelets a little low. Maybe something impacting my gallbladder, maybe just a minor infection has been coursing through. Tough to say really. We have a good doctor/patient relationship, so we can speak frankly. He says with a smile “You might want to remember you’re on chemo. It’s not going to feel great all the time.” We laugh. I ask what more I can do or change in my diet or daily efforts. He says I’m doing everything possible and far more than most. Just keep at it.

But he decides we should move up the next CT scan and see if something new has cropped up or developed to explain the way I’ve been feeling.

So here I sit in the waiting room, drinking my nasty contrast solution getting ready to get back in that machine and take some pictures. I hope my insides look good.

What does today mean?

This scan could mean everything that the scan meant in January. It could look largely the same. It could show some additional growth in the main tumor mass, or it could show some growth in other areas. It could indicate the Gleevec isn’t really working further on that area, but that it’s continuing to shrink those little satellite nodules throughout the gut. It could show some invasion into organs, but really it’s hard to see too much specifically in those various shades of grey.

What it all can mean is we are likely getting close to that point of decision. Go or no go. Do we schedule a surgery or keep trying to put it off and hope the drug derives even more benefit. This last four months was just that, a hope that it might do a little more good, especially in saving a portion of my stomach. We know the spleen is a goner. Some kidney, liver, diaphragm and intestines are going to be cut. The stomach is the real question. It’s very likely most if it is going to be cut out with the tumor, but we hope to save a little bit. The difference post-surgery is pretty big if we can keep a little of it.

The surgeon has said it’s basically a judgement call. So today is a little more data in which to make that call. Ultimately it’s up to us, Heather and me to decide. The surgeon is going to give her advice, and we’ll likely follow it. So this scan is a pretty big deal.

So many or so few choices

Heather and I take regular walks around the neighborhood. These are good times to chat about how we feel about anything. Often it’s the kids, upcoming events, etc. All the regular stuff. But it’s also when we often spend a little time talking about what the immediate future holds. When it comes to the potential surgery, it’s both good and bad. It’s heartening to know surgery is at least on the table as an option. It’s honestly pretty unsettling for me to think about the impact on my quality of life, but the fact that it can buy me some longer life makes it a pretty important choice to consider.

One choice would be to not have surgery at all. The loss of so much organ tissue and especially the stomach is frankly going to suck. No other way to put it nicely. Even beyond the painful recovery period, it’s dietary restrictions the rest of my life and reduced capacity in many of the ways. But, it is extended life and likely many years with the cancer in recession or at least much reduced.

We could choose to not do the surgery and pursue continued drug treatment along with anything else we can find. What that would mean is really unknown. Based on the recent scan likely continued tumor growth and all the pains and problems that will entail. We could look at other alternative treatments that many believe in, but offer no guarantees. There is always hope, and often many promises of possible natural healing, but I’m not sure what I really believe can happen through these methods. Plus none of that is covered by insurance and I’m very much opposed to adding to the financial strain on the family to grasp at some of those straws.

That’s a whole 'nother post I’ve been thinking of writing about.

For now, following the traditional medicinal route along with some supplementation and healthy efforts have been my course. Even through physical difficulties I’ve maintained my workouts, healthy eating and trying to get the rest I need to allow my body to be in the fight. It’s taken a toll on many aspects of life, particularly the amount of time I can work, which adds to some of my stress about providing for the family as best I can, but I’m grateful to keep active at a reasonably good level. That’s more true some days than others, and not as good lately as previously. I expect that’s only going to get worse at some point. It’s been on my mind quite a bit more about what I might do to prepare for likely soon time when surgery comes and the long road of recovery takes place. Plus how it’s going to be leading up to the surgery and making preparations for everything involved.

Other days I just try to forget about it and handle the daily stuff that we all deal with no matter what else we have in life. It never really leaves my consciousness though. It’s a big part of my life, and that desire to live.

Hurry Up And Wait

So back to the waiting room and the here and now. The contrast solution is nearly all consumed. I’m being a good patient and getting ready on time. Sitting here with a computer writing my rambling thoughts is my therapy and passes the time quickly. Soon the scan will be done and I’ll be headed to the office to get on with the day trying to tackle the mounting tasks and requirements that never seem to get done in my half days of working.

Once the scan is done, then it’s yet another waiting game. Waiting for the radiologist to read the scan. Waiting for the Oncologist to take a look at the report. Making sure it gets sent up to the Surgical Oncologist for her take on things. That could be days or likely into next week. So while I can get the scan disk myself pretty quickly - which I do because I’m a geek like that - getting the experts to weigh in takes a little time.

Now we wait and see. Then we decide based on the new information.

Deja vu all over again.