The Family

We are done with radiation.

We are done with treatment. With everything. We are DONE. Well, there’s a day surgery in a few weeks to remove the chemo port. But it is good to think that we are done. 🙂

All the tests have been positive – good enough that they’ve started us on a 6-month check up schedule right off the bat.

So, till August, we get to live our regular lives.

We are over half way. Through the chemo, at least.

After the chemo we have a month of radiation. But before the chemo we had a month of diagnostic tests, so sure – we’re half way there.

There are several hopeful signs.

Most importantly, they did a PET scan and it came back very good. It didn’t find any overt signs of cancer, and just one potentially suspicious looking node around the area where all the hot spots were previously, and it’s much smaller than anything they found before.

On a scale of 1-5, we were given a 2. The dr says that 1 and 2 are both highly favorable.

Joseph has been having some numbness in his extremities and some fine dexterity issues following chemo – the results from the PET are good enough that the dr halved the chemo drug that usually causes those side effects. It’s 4 days after chemo, and the numbness is only barely present (this is when it would be peaking). So good there, too.

The other good thing is the white blood cell count. We had seen his levels drop so precipitously after each treatment – it was something the previous clinic delayed treatment for. Two treatments ago, his white blood cell count started at 1.9 (“low” is under 4; normal is 4.5 to 10) and the dr just said to go ahead with the chemo. We were concerned that his levels would reach ‘cannot be measured’ territory – 0.0001 or something. But his levels before this round were steady at 1.9. Like this is the sustainable low, and it isn’t going to crash down too much lower than that.

It’s still terribly low as we continue through the heart of cold season. But is is comforting to think that there is a immune system there, even if it’s getting pretty beat up right now.

It’s been two weeks, which is just about one cycle.

Who knows if the next 7 treatments will follow this same pattern (including when we’re able to schedule these things – they only let us do one week schedule in advance), but for now here’s how it goes:

The consult at MD Anderson went very well.

The oncologist we saw (who we really liked) looked through all the tests and said that the treatment plan already outlined is what he would recommend as well. Furthermore, he said that chemo is pretty much the same wherever – the drugs are what they are – and we can do that here but do our check-ins with him. However, for the final radiation component, there is some operator expertise involved, so we’ll do that part at MD Anderson itself.

So we have a final treatment plan. We may have to make some tweaks based on holidays, Joseph’s reaction to the chemo, and any upcoming infections, but here’s the overall plan:

Chemo:
8 total treatments; 1 chemo day every other week.
First treatment is this Thursday (10/29) and will continue to be on Thursday afternoons (except where it bumps into the holidays).

PET scans
There will be a PET scan halfway through the treatment (as scheduled, that would be the week of Christmas. We’ll see.) and another one at the end of treatment. Both of those will be in Houston.

Radiation
At the final PET scan, they’ll do some other scan for the radiation team to plan their approach. And then we’ll find out the radiation plan and go with it.

The PET scans should show us how effective the chemo was. If they show us we need to do another round, we’ll figure it out from there. The radiation is to keep it from coming back.

We are seeing a local oncologist. We’re also going to be in Houston next week getting a second opinion.

So this is the local dr’s assessment and treatment plan. We’ll see how closely it agrees with what the good doctors in Houston have to say next week.

It is at Stage 2A. Stage 2 means it’s in multiple locations, but it hasn’t spread out of the chest (it’s a bad marker if it’s moved below the diaphragm) and it hasn’t spread to any other organ systems. ‘A’ means that he doesn’t have any physical symptoms (sudden weight loss, fever, night sweats, extreme lethargy).

The treatment plan for this is 8 doses of chemo. It’ll be one day of chemo every two weeks, so the whole thing takes 4 months to get through. Then he’ll have another set of CT/PET scans to see how effective the chemo was. This will be either followed by radiation in the current hot spots, or radiation and further treatment.

All that remains is to see how hard the chemo hits. But in general, this seems like a timeframe and a schedule that we can manage.

This is going to be a long laundry list of things that I have though of that would be helpful.

I don’t need anyone to do all of these things. I’m listing all the things that come to mind specifically because I don’t want you all to think you have to do all the things. Pick the things that seem good and doable and fun to you. They will all be helpful to me.

And if a thought I’ve listed suggests some permutation to you, it is very likely a good thought. Feel free to ask, but also feel free to innovate and surprise.

Continue reading →

I’ve been giving some thought to the ‘what can we do to help?’ question.

Truth is, there’s lots of stuff that would be helpful. But I don’t really know how to list it.

I made an Amazon list for the things-in-a-store stuff. If that works, I can continue to fill that in.

Every time I list the more intangible stuff here, though, it starts to sound weird. Any suggestions? Reassurance that if I list lots of ideas, you won’t all think I’m being demanding or weird?

This post was “The New Normal” but apparently Joseph feels even more strongly that that is an irritating expression.
What an appalling phrase. It’s only used when you’re adjusting to something tremendously bad, and yet there’s this veneer like it could be anything (good or bad) that’s happened. It’s a euphemism that doesn’t even try to be happy; like the best it could manage is to pretend to be neutral. Blech.

And yet, here we are. All unbalanced looking for any normal.

So everyone knows by now – Joseph has been diagnosed with Hodgkin’s lymphoma. With cancer.

We’re still in the testing phase. We don’t know what stage the disease is at, or when treatment will begin (though we expect progress on both of those questions this week).

I’ll be posting more as I know more.

Oh, and apparently Hodgkins lymphoma is violet.