Shift, Return

It’s Thursday morning and we’re back from the wilds of southern California.  We had the cold caps in the car at the airport, so on our way home from the airport we stopped at PraxAir and dropped them off with JJ in the deep freeze.  We’ve already picked them back up this morning (along with the dry ice de jour) and had breakfast, both while Deb was on a conference call and a webinar.  That’s OK, though, since I do most of the dry ice portioning and prep on a usual basis anyway, and Deb had already told me what to order for her for breakfast.

Deb weathered the trip to the House of Mouse well, all things considered.  She didn’t really have any neuropathy to speak of, but that usually only becomes noticeable when her hands are cold and that wasn’t a problem in Anaheim.  Nausea was a slightly different story, but it didn’t really hit her at any times when we were moving about or possibly being jostled (either while on a ride or just trying to move through the madding crowd). Mostly it affected her when she was hungry, so we have found that smaller, more frequent meals tend to help with that.

Speaking of side effects, we don’t know whether what she’s had over the last week are enough to make Dr. Ahmed decide to forego Taxol again or not.  We should find that out when we see her officially at 11:40.  Deb did see her briefly while passing in the hallway a few minutes ago after Deb was up in the infusion area to have her weekly blood-draw, but they didn’t talk about anything more than the cold caps and making sure that they have the literature on them so other patients can know about them.  We will have to wait and see.  I will update this post accordingly.

And yes, I did actually attend sessions (and present during one of them) at the conference instead of spending all of our time at the parks.  Deb even got to meet one of my favorite professors, Dr. Schneider, and also have dinner one evening with Dr. Schneider and one of my classmates and his wife.  Not to say that we didn’t get to ride all of the rides we wanted to ride.  I think Deb will be happy at any park that has a roller coaster, and one that has four or five is even better.  But the fact that I had sessions to attend allowed us to hop over to the park for a little while and them back to the hotel so Deb could rest while I was busy at the conference.

I did find her a little something, though.  I stepped into one of the plethora of shops and happened to notice, among the variety of different mouse ears they sell (there are hundreds), one particular set I hadn’t seen anyone else wearing.  But they are just the right shade of Breast Cancer Pink, so I snapped them up right then.  From then on Deb was only allowed to take them off while on a roller coaster or to go to bed.  I’m thinking she will have to wear them over the cold caps today if she gets taxol.

Isn’t she adorable?

One last note.  We saw Deb’s plastic surgeon last week before we left.  He seems pleased with Deb’s progress recovering from the mastectomy and we have set a tentative date for her restoration surgery.  More to follow as we go along.

:::: LATE BREAKING UPDATE ::::

We have seen Dr. Ahmed and she feels that Deb's side effects have improved enough that she will receive Taxol today in addition to the Herceptin, which is what she is getting right now as I type this.  The first cold cap is on her head and she's chilling out (ha ha) while checking her email on her phone.  Chemoday 10 of 12 has begun (remember that we skipped 8 and 9, and that I'm only counting the Taxol weeks and not the Herceptin weeks, which will continue every three weeks after the first 12 for the remainder of a year (so around March 2017).

Shaking Things Up

If you are tuning in on Monday morning to catch up with the daily goings-on, you may be a bit surprised to learn that there will be no chemotherapy on Monday.  It will be on Thursday this week instead.  Yes, this was planned.

Why, you might ask? We are traveling to Anaheim, CA, tomorrow morning (that's Saturday the 21st, for those of you who haven't noticed the date of this post).  No, we aren't going for a Disneyland vacation.  Mostly.  We will be staying at the Disneyland Hotel, and it might be possible that we happen to find ourselves inside one (or both) of the parks at some point or another ... or another.  But the purpose of the trip is that I will be presenting a paper at the annual  conference of the Institute of Industrial and Systems Engineers - and yes, I am a member.  Deb will (I hope) be in the audience for encouragement ... or heckling.  I'm not really sure on that point.

Since the conference is being hosted at the House of Mouse I feel fairly certain that we will be able to find something to do during our downtime.  I just hope that Deb's low-grade nausea doesn't kick in and keep her from doing any of the rides that she might want to do (I'm thinking of you, Matterhorn).

So tune into this channel on Thursday to see how the trip went and how the chemotherapy is working out.

M-I-C See ya real soon!
K-E-Y Why? Because we like you!!
M-O-U-S-E

(I wonder if I should work that into my presentation somehow ... ?)

All Quiet on the Northwestern Front

Despite the post title it hasn’t been entirely quiet here this week, but it hasn’t been terribly full of intrigue and great feats of derring-do.  Deb has stayed a lot closer to home, with her only trip out of town being a one-hour jaunt down I-5 to Tacoma.  Most of the rest of her time has been spent either on the phone or on the laptop, though we were able to get out over the weekend to run our usual slate of errands.  The biggest difference from our usual (recent) routine was, of course, the fact that we had much of Monday afternoon not center around anything having to do with dry ice (or anything else at -30° F).  Instead we stopped on the way home at a store downtown that sells office furnishings.

We had been into the store the previous weekend looking for desk chairs for each of us, I picked a model I’d used before while working in Oak Ridge (thus the choice was easy for me).  Deb hadn’t been sure how she would like one particular chair over another one based on a simple 5 to 10 minute sit, so the salesperson (Rachel) invited us to come back in sometime during a workday and let Deb use one for an hour or so while she worked on her laptop.  Brilliant.  So we did just that.  Sadly for Rachel, Deb discovered that the chair in question isn’t comfortable for her over the long-haul.  Oh, well.  Back to the drawing board (or CAD workstation, these days).

But we have returned to Monday morning now, and we are sitting at The Wandering Goose for breakfast wondering what the near-future will hold.  Deb will have her blood drawn at 10:30am for analysis and we report to the oncologist an hour later.

The reason Deb got to skip the taxol infusion last week was because her side-effect symptoms had built up to a level where Deb was having more persistent malaise/nausea and occasional neuropathy in her fingers.  I think Dr. Ahmed had hoped that taking a one week break would clear that up.  Well, it hasn’t, really.  Deb is no worse off than before, but not really doing all that much better either.  The neuropathy is about the same as before, and the nausea is just as bad as before (to the point that Deb is feeling it a little even now). 

Does that mean we will skip another week?  I guess that’s up to Dr. Ahmed and Deb, ultimately, but I’m not thrilled about putting Deb through more taxol until we actually see a marked improvement.  I keep thinking about where the intersection on the risk/benefit graph might be, and while we can’t know for certain where it is I personally feel that we might be on the wrong side of it.

What does all this mean?  Well, right now it means that I will be updating this post after we see Dr. Ahmed for Deb’s oncology check-in.  Taxol?  No taxol?  We have the cold caps and dry ice ready this morning either way.  But I really don’t mind wasting the money spent on the dry ice if it comes to that.

::: LATE BREAKING NEWS FLASH - AGAIN THIS WEEK ON SPECIAL ENGAGEMENT :::

Just like last week, there is more to today's story.  We got to the medical center early to let them do Deb's blood-draw in time to get results before the oncology appointment.  Turns out that the appointments were running late as they always do when there are residents rotating through.  That isn't a complaint about residents.  I am all for giving them the opportunity to get training, even if it means the appointments run a little longer.

When we finally got in and Deb described the maintained side-effects mentioned previously, Dr. Ahmed decided that it was not yet time to restart Deb on taxol, so we get another week off from that (and another week off from dealing with the cold caps for six or so hours).  Dr. Ahmed also answered my burning question of whether or not we would be tacking on the missed doses to the end of the 12 weeks or whether we were deleting them.  She feels that, since the side-effects are still in force, there is still enough taxol racing around in Deb's system that we will count that as the dose.  Ergo, no additional doses at the end of the 12 weeks.

So Deb is now sitting in the chair getting her Herceptin dose only and I get to have another half-afternoon not dominated by messing with cold caps and dry ice.

One final note today - Deb will not be getting an infusion next Monday.  She will be getting it next Thursday instead.  We will be in Anaheim, CA for the first half of the week so I can present a paper at the annual conference of the Institute of Industrial and Systems Engineers.  Deb will also get a chance to sit down with coworker/partner/mentor Jan in person since Jan lives relatively close by.

Winging It (One Step Forward, One Step …)

Something happened this week since my last post.  Deb flew the coop.

Let me start with the end of last Chemoday.  It was actually fairly uneventful.  Deb’s infusions went as expected, and I was able to use my newly found escape route out of downtown and be largely unaffected by the Alaskan Way Viaduct closure that snarled traffic for miles (and miles) around.  We continued the cold cap change-out process until 7:00 pm as usual.

But the next morning Deborah left me.  Well, I actually took her as far as the airport.  She took her first flight and overnight trip since chemotherapy began to go to Chicago on a business trip.  From everything I heard, the trip went very well, and she flew back to me (well, to the Seattle-Tacoma airport, but I was there) on Thursday evening.  The trip really was a major milestone toward Deb’s return to normalcy.

Sadly, there is still the issue of side effects of the chemotherapy to deal with.  Things still taste a little metallic to her.  There are also signs of some build-up of cumulative effects with the malaise/nausea, and she has had to start taking more medications to try to stave those off.  There is also a higher buildup of fatigue by the weekends.  We are still trying to make sure we get out and do some things on the weekends if only to get some exercise in, but I am aware of a decrease in her stamina by the weekend.  She tends to bounce back on Chemoday with the cocktail of pre-meds they give her (which includes a steroid, among other things), but by mid-Friday it seems to catch up with her again.  At least we are on the downhill side of things with the Taxol.  Maybe there is another dose-reduction in the offing?

But the worst thing this week happened just after noon on Friday when Deb went to have her weekly blood-draw (they test her blood each week to make sure her white blood cell counts, red blood cells counts, platelet counts and liver enzymes don’t go all wonky – and yes, that’s a technical term … as far as you know).  There are a couple of technicians in the lab that do the blood draws.  She really likes one of them.  This time she got the other one.  She ended up blowing out the vein in Deb’s left elbow, so we’ve gotten to watch that bruise develop all weekend long.  The problem is that they can’t draw from Deb’s right arm since the surgery.  What now?  Good question.  We’ll ask the oncologist about the options for this coming Friday, but we may end up having to drive a lot further to have the blood draw done from Deb’s chemo port instead.

Today is Chemoday 8 of the planned 12.  That’s 2/3^rds (or 66.667%, or 0.667) of the way through.  We have gone to PraxAir for the caps and dry ice and are now sitting at Oddfellows in Capitol Hill, with Deb pounding her keyboard and me pounding mine, having just finished our respective breakfasts and nursing our coffee (me) and tea (her) until it is time to head over to the infusion center.

No big trips planned this week or next.  Deb will drive to Tacoma and back tomorrow, but that’s only about an hour by car each way.  Two weeks after is a different story, but I will discuss that when the time comes (I have to keep the anticipation building, right?).

:::LATE BREAKING NEWS FLASH:::

We are at the infusion center after seeing the oncologist. Two things, the minor one first.

I heard a term today I hadn’t heard before.  “Pharmacogenomics.”  It’s actually a term that makes perfect sense to me, but I did just hear it for the first time.  Turns out that Deb says it's something she discusses in her work all the time and that her coworker Mike (who visited a few weeks ago) has his PhD in it.  Just another thing she's been keeping from me.

Now the major item.  No Taxol today!  That means no cold caps either!  Woohoo!  However, that’s just for today … so far.  When we talked to the oncologist and discussed the ongoing slate of side effects (and their cumulative nature), she decided to give Deb a break from Taxol this week.  The plan is to resume the Taxol next week as long as Deb is returning to normal, but today she is just getting the Herceptin.  Oh my, what will I do with the time we don’t spend dealing with the caps?

I have a few ideas already.  Surprisingly none of them include dry ice ... yet.  Hmm, maybe I can work that in somehow?

Upon the Crest

Hello again from lovely Seattle (and it is lovely this morning with nary a cloud in the sky).  We got up earlier than normal this morning to head down to PraxAir in anticipation of the latest iteration of ViaDoom, and by all indications this morning we were right to do so.  We did end up hitting SoDo a little early so I went looking for my first coffee without resorting to Starbucks, and by the time I found it and got back to PraxAir JJ had opened up the store and we were able get the caps and dry ice.

We went to Macrina Bakery and Cafe for our usual Chemoday breakfast and Deb’s first few calls of the day, and now we are at Roy Street Coffee for more caffeine (oh, yeah) and to both work on our laptops until time to report to the medical center.

If you are following along, you might remember that our trips home after chemo are always a bit of a time-challenge.  I am happy to report that last week I was able to figure out a new way onto the express lanes that shaved significant time from our commute.  This week, however, is a complete unknown.  What with the viaduct closure, the beginning of tourist/cruise season, and the reroutes of traffic to go along with that, I have no idea what situation will exist when we leave for home this afternoon.  Wish us luck.

Also of note is that we have gone over the half-way mark on Taxol now.  Today represents #7 of the planned dozen Taxol infusions.  We aren’t out of the woods yet, and we don’t quite see the light at the end of the tunnel (who in the world built this tunnel in the middle of these woods, anyway?), but so far Deb still has her own hair still on top of her noggin.  She noted that there was a little more hair that came out when she was combing her hair out the other day than normal (i.e., pre-chemo), but not more than expected given everything.  It would appear that the caps are working.  I’m happy about that, because I would hate for her to have gone through the whole freezy-head process in vain.

So that’s most of the news, except that Deb and I decided to undergo a separation yesterday.  It’s really for the best given the problems that … what?  No, no, no, I don’t mean that kind of separation.  Is that what you thought I meant?  No, I’m talking about our Apple accounts.  We were having problems with text messaging bleed-over and calls phantom-ringing across our phones and all that.  The Apple technician helped Deb set up her own Apple ID so her phone is now on it’s own separate account, but we still set things up so we can share calendar events and other little things.  But it was still a little traumatic.

The current status:

• ·      Taxol – 7 down, 5 to go
• ·      Herceptin – 7 down, 17 to go (switching to tri-weekly after Taxol is complete)
• ·      Tamoxifen – Not yet started, 10 years
• ·      Reconstruction – to be scheduled no sooner than 3 months after Taxol is complete, dependent on surgeon’s schedule backlog