The Yuck

Adam’s stomach is now a wreck. He is very nauseous. He is going to talk to them today and see if they will call in a prescription for anti-nausea med.s for him. I think that his stomach and bowels are getting hit in the radiation and that that is causing the yuck.

Even so, he is still so excited about the election. I wish he hadn’t had to go to work today feeling so yucky.

Radiation: Day Two

Adam said that radiation went quicker (20 minutes) and less painfully today. Thank god. I’m not sure either of us could have imagined 5-7 weeks of this otherwise.

He IS really tired.  Last night he fell asleep at 9 pm.  Totally unlike him.  I have pictures of the fun battle scars where he’s marked for the radiation.  I will post them soon.  I’m too excited about the election right now for much of anything else.

Radiation: Day One

Well, day one of radiation was difficult.  Adam was very uncomfortable, and it took over an hour, but I think the set up part is the worst, we’ve been told.  He had to lie on a hard table the whole time, which is now quite painful, missing two ribs and a major chunk of his side.  Next time is supposed to go quicker.  Tonight he is very tired and worn out, which we were told to expect.  So, one day down, a whole lot left to go.  We’ll just keep chugging along.  No other way to do it, I suppose.

Bring on the Waves

Adam starts radiation Monday at noon. Here we go, folks. Wish us good luck.

The Most Difficult Case

So about an hour ago, I got a call from Dr. Smith. For those of you following along at home, Dr. Smith is the radiology oncologist who will be doing Adam’s radiation, and who is currently working on his radiation mapping.

She called me. I’m not sure why, except that I do handle most of the day-to-day stuff regarding the cancer. And she goes, that disk that you dropped off this morning with his original CT scan results, well, that makes things more complicated. And that’s okay, because it’s good for us to get a full picture of the area and the tumors, but wow. She goes, plus, Adam is a big guy. Well, she says, I guess you probably already know that, don’t you. And his scar is very large (12 inches), and it wraps around from his front to his back. And the area takes in bone, tissue, and organs. It is safe to say, she says, that this is one of the most difficult mappings that I have ever done. But we will get it. That said, I think we should take a little extra time, so that we make sure we get it right. We are going to take an extra week and push back the start of radiation likely until the end of next week or until the next week. This is a very difficult mapping. His is a very unique case. Also, I would suggest that if you need to ask anyone questions about the radiation, that you ask me personally, as I’m not sure most of the other folks who you’ll be working with are going to really have a handle on it.

I knew already that she would be out of the office for the next 2 weeks, as she is having knee surgery, but she said that she will continue to work on the mapping and that they will likely start radiation before she gets back, but that she will only miss about a week.

Sigh, could there be some fucking thing about this that doesn’t make us the one fucking crazy apple in the bunch, please? Could we get a big ole helping of totally normal and mainstream all up in here right about now?

Welcome to the Club

I feel kind of like yesterday was Introduction to Cancer Club. Welcome, here’s your bag of swag. Here’s your fun cancer pillow. Here’s your book about being a cancer spouse. Guess what fun rush activities you get to do? We’re tattooing him and everything. You’ll want to buy Aloe Vera. Read this. You’ll be here lots. Party’s everyday at 3 — it’s a blast! Sigh. I guess it was inevitable that it would happen. Everyone’s super nice and all. Just wish we could have joined the art club or something.

Let’s Go

So here’s what happened in bullet points for ease of understanding:

1) Medical oncologist thinks that chemo is not the cure-all for these types of tumors that some think it is, and instead suggested that we do another drug therapy (which I need to go get filled at Target). I like this guy and he sounds like he knows what he’s doing, so we’re going to play along for now.

2) He also wants Adam to have a colonoscopy to rule out colon cancer and/or some genetic abnormalities that may accompany colon pollops (which we don’t know if he has, or not), as there is a correlation between colon cancer and these types of tumors. If he has the pollops, then we do genetic testing to see if there’s a genetic component. If so, there are currently no drugs to treat that genetic component of the cancer, but there are many drugs in the works that might 5-7 years down the line. That’s a lot of ifs, though, obviously. Hopefully we won’t get to the end of that line. The colonoscopy will happen post-radiation.

3) The radiology oncologist was awesome. Adam is scheduled to start radiation on October 27th. It will likely be a 5-6 week stint, everyday. They did a CAT scan today so that they can map the radiation over the next few days. He got his rad radiation tats so they know where to put the electrodes, et al. each day. We got a fun cancer bag of stuff.

4) I have to run around on Monday and get a few more pieces of medical imaging for the radiologist so that she can get the best mapping possible.

Lots of Cancer Appointments Tomorrow

So tomorrow we meet with the new radiology oncologist to schedule Adam’s mapping and schedule for his radiation, and we also meet with the medical oncologist to discuss chemo and other drug therapy possibilities. Just wanted to put that out there as many places as possible, so that we can have good thoughts. We are going to be doing a pretty substantial round of radiation therapy, we’ve already decided that, now we are just going to figure out when the everyday 5-week stint is going to fall. I am not sure I want to hear what the chemo doc says, but I am ready. Yes, or no, we are ready to tangibly do something to prevent this from coming back again.

Radiation Here We Come

Well, we met with the radiology oncologist this morning. He thinks we should definitely do radiation now. He said that had the tumor come back a year from now, his recommendation would be drastically different (for surgery), but the fact that it came back so quickly makes him think that radiation is the best course of action. I really like this doctor. A lot. The only thing that I didn’t like is that he gave us the pity look. I know it’s because he just saw us in April under a very different set of circumstances. Then he told us, the chance of this coming back right away is very small (which it was) and that we should be glad that we weren’t a traditional cancer patient who had to worry about metastizing tumors. This time we got the pity look, as we are, unfortunately, the folks who do have to worry about rapidly returning aggressive tumors.

He was super nice, though. He left it up to us. He answered all our questions. The good part is that radiation on a whole in Desmoid tumors reduces the chance of recurrence by 2/3 (of course we will be the 1/3, I’m sure, but still…), it tends to delay the return of tumors in other cases, and it is generally considered the next course of action when surgery is not working to prevent the tumors.

The bad part is that this is it, we can only do radiation once. Then the tissue is destroyed, it will make it more difficult to both monitor and do surgery, because of where the tumors are (near the major organs) the radiation may do some damage to the organs, and it increases the likelihood (though only slightly) of contracting some other type of cancer down the line. It is much more successful than chemo at preventing recurrence, though it comes with more permanent and long-term negatives. It is, though, thought to be the best option for preventing recurrence. So, yeah, there we go.

I have to call a different hospital, though, to make an appointment for the radiaion treatments, as Dr. Coster’s office is way far away from where Adam works, and since he will have to go everyday for 5 weeks, it is just impractical to go there everyday. So I have to call the other hospital in a bit and get us an appointment there for them to map the area for radiation.

We should start relatively soon, he said, before the Desmoid cells begin regrowing, as it becomes less effective then. Adam will likely be fatigued and may have “intenstinal distress.” I can’t think of anymore information. So, you know what I know right now.

We are still going to see Dr. Myron, the medical oncologist, next week, to see what he has to say about all of this.

More Doctors’ Visits

Well, this week is when we start back at the doctor’s visits. Thursday we see Dr. Coster, the radiologist, and next week (the 17th) we see Dr. Myron, the medical oncologist (chemo guy). Hopefully after next week we will have a better idea of what we’re looking at. I would WAY prefer if someone would juts give us a friggin’ schedule and let us know what the next many months hold. I’m sick of talking about it, let’s get this show on the road and actually do something to keep these tumors from coming back.