Half-way, Sort Of

Today represents the half-way point!  … For Taxol.  Not for Herceptin, and certainly not for Tamoxifen, and not for the eventual reconstruction surgery process, but we will take what we can get.  Taxol is one of the things I’ve been worried about with her the most – mainly due to the possibility of adverse side-effects – so getting to a milestone mark is a big deal for us mentally.

Deb has been dealing with some of the on-going side-effects even after the oncologist cut the dosage of the Taxol, though they have been less severe overall.  She still has less stamina (though she is good at powering through), she still gets a little numbness in her fingers especially when she gets cold, and there are still occasions of low-grade to mid-grade nausea (though that is less when she takes the anti-nausea medication early enough).

The good news is that she’s been in excellent spirits for the most part.  Out-of-town guests have helped with that.  I previously reported that “Simone” had been here for a visit, but that she had left before last Monday Chemoday.  This last week brought even more visitors.

On Thursday we drove to Vancouver, BC to pick up a couple of Deb’s coworkers (Mike and Sarah) who had been attending a conference there.  We had dinner there and then drove them back to Seattle for the weekend.  After they all worked from Deb’s office on Friday (it was a bit crowded in there) we tried to give them the condensed Seattle experience (given that we only had around 48 hours to do it) but I think we hit the highlights well enough, including the Space Needle, the Pike Place Market, and the Ballard Locks.  Most people have heard of the first two of those, but everyone we take to the locks is fascinated by them (as are we) so I think that should be on every Seattle visitor’s list.  We also took in Discovery Park and a few other locations.  The one regret Mike had (that I’m aware of) is that he couldn’t see Mt. Rainier.  The clouds just wouldn’t cooperate.

We dropped them off at the airport around noon yesterday, so we had a good opportunity last night to see a couple of other good friends from Knoxville, John and Leslie, who had actually been in Seattle since Thursday evening as well, but they’d had plans of their own (they’d come in to see a particular concert on Saturday and just made a long weekend of it since it was John’s birthday).  We took them to dinner at one of our favorite restaurants and had a nice evening of catching up, so that was lovely (though Deb’s nausea started catching up with her on the drive home).

But now the weekend fun is over and Chemoday #6 is upon us.  We’ve already picked up Deb’s cold caps at PraxAir and had breakfast at Macrina in SoDo.  I started writing this post at the coffee shop we went to so Deb could get some work done on her laptop before we reported to the torture chamber Infusion center.  I took a break to get us over here and I’ve just finished up putting the first cap on her.  Now the cycle begins of thrice-hourly replacements.  More fun than a barrel of monkeys (which I’m guessing that it wouldn’t really be fun to deal with a barrel of monkeys at all – and the smell … ew).

A Change of P(l)ace

Greetings again from downtown Seattle No!  We are actually in a different location this week.  Deb's oncologist is covering for another doctor at one of the many satellite locations of their medical group, so today we are in Canyon Park, which is adjacent to - and may actually be considered a part of (?) - Bothell.  The distance we travelled to get here was a little more than to our regular appointment location, but we hope the traffic won't be quite as bad (but likely will) when we leave.  We've been here before to see her surgeon, so it isn't as if we'd never been here before.

Deb had a pretty good weekend, mostly due to a ~48 hour visit by a friend of hers who flew from Minneapolis just to see her.  We did get out to do a few things while she (let's call her 'Simone') was here, so Deb got to test her stamina and overall she did pretty well.  We even made it to a soccer game - 'Simone's' first professional sports event - and our team even won (Go Sounders!).  Why am I calling her 'Simone'?  Yeah, that was after an autocorrect issue while she and I were setting up her visit.  'Someone' became 'Simone' somehow.  I hate that Otto Korreckt guy sometimes.

Deb has even had some improvement in many areas of her side-effects, though her 'off' feeling (maybe light nausea?) has occurred a bit more often.  Not to the point of stopping her from doing things, but something she has to deal with.  Stamina is still a bit less than baseline (i.e., before surgery and treatment got started), but has been steadily creeping back up.

So right now we're sitting in the Infusion Services room at PacMed-Canyon Park and Deb has started on the pre-meds and is chilling out - literally - with her first cold cap of the day.  I've got the timer going for the cap change-outs, so my work routine has started in earnest and will continue for several hours, likely until 8:00pm or so tonight.  I am ready to go back to the downtown facility next week, though.  I definitely have more room to move around there.  It's a bit cramped here with the cooler, me, and all of our other stuff sandwiched into about 10 or 12 square feet of space and having to jump into action every 20 minutes.

And for those of you keeping score at home (or at work, or on-the-go), this is chemo-day 5 of 12, representing 41.6667% of the way through this onerous process of allowing people to pump toxins into my wife.

A Bit of a Stretch

One thing I haven't touched on much during the whole recovery process is Deb's range of motion, specifically in her upper body.  She was fairly sore after the original surgery itself with the right side being the worse (mainly due to the additional work the surgeon had to do with the lymph nodes on that side).  She had really only just started to feel improvement before the port went in and messed it all up, leaving her bruised, stiff, and tight on the left side.  Now the right side is her better side.  Go figure.  Been there, done that so many times I get royalties on the t-shirts now.

So part of the weekly routine, along with the chemotherapy I have been reporting on, is a visit to a physical therapist.  Happily we don't have to drive all the way downtown for that appointment since it is only a few miles from the house to her office.

Deb has now seen the physical therapist four times as of yesterday, and she has actually been improving in her range of motion - and comfort in that range of motion - each time.  The therapist goes through a routine of numerous stretches for Deb to do at home, so Deb and I have been dealing with those a few times a day as well (I'm mostly there to support her arm at full extension and say "Relax ... relax ... relax ... more ... relax a little more ... relax ..." over and over).  I have been very encouraged by her progress so far, but she still has a little further to go.  And honestly, she's already got better range than I do (or will ever have again) in some directions.  But not all.  At least I still have that.

So to give you a general idea of our week these days, this is the list of appointments:

• Monday - Yeah, Chemo Day.  We also have to go to pick up Deb's cold caps at 8:00am when PraxAir opens.
• Tuesday, Wednesday or Thursday - Physical therapy.  There isn't really a set day or time.  We're really just scheduling around Deb's work commitments.
• Friday - Bloodwork draw.  Deb has to go have her blood drawn in advance of Chemo Day, so at some point across the day she will pop down to a lab a few miles from here (the Northgate office of the medical group her oncologist/surgeon/GP belong to - too bad they don't have an infusion center there).
• Also Friday - We go drop off the cold caps at PraxAir so they can be stored on dry ice over the weekend and thus be nice and cold on Monday mornings.  We try to do this around 4:30-4:45pm figuring that JJ won't be too busy around that time.

And then we just do the other stuff (like stretches and so on) at regular intervals.  There will be a couple of breaks in the exact timing of our routine during the two weeks (so far) when Deb has travel scheduled, but everything will still go on about like that as long as she's doing chemotherapy and PT sessions.

Oh, and one thing to report about Monday (since I posted early that day).  Deb's oncologist listened to the current list of side-effects and severity (it's usually her first question) and decided to cut the dose of her Taxol down a little bit.  She felt that the adjustment won't affect the effectiveness of the drug, but will decrease the severity of those side-effects.  Time will tell.  We are paying very close attention to the side-effects.  Very close indeed.

Cold Comfort

It’s Monday yet again, and this one marks four weeks of the total planned twelve for the Taxol infusions.  Planned, I say, because nothing is definite at this point as to whether she will complete the full course or cut it off early.  The Taxol side-effects started out light at first, but seem to be intensifying as we go along.  The Herceptin is an entirely different matter, of course, but with its own side-effects to consider.

The current slate of side-effects that Deb is experiencing is, in no particular order, as follows –

·         Everything now has a decidedly metallic taste to it.  I told her to cut down on the heavy metal music, but she didn’t seem to think that was having any effect (also, she doesn’t really listen to heavy metal music)

·         She has occasional bouts of malaise, sometimes including nausea.  She has a prescription med to take for that, but it can take some time to take effect.

·         She is starting to experience some hair loss.  Not on her head at this point, so at least we still have hope that the cold caps are doing what they are intended to do.  No, the hair loss at this point means that she isn’t having to worry as much about shaving her legs every day – or at all – for a while.  She still has her eyebrows, so it’s likely that some hair loss will continue.

·         She doesn’t have the stamina she would like to have.  Having said that, we did make it to the gym on Saturday and she was able to go for 30 minutes on the elliptical trainer.  Not her usual 40 minutes followed by weight training on some of the machines, but at least she’s trying to keep her conditioning up.

·         She had one of those “Oh, I stood up too fast” moments the other day and took her a long time to recover – much longer than normal.  I actually think that could be a Herceptin side-effect.  We’ll ask the oncologist today when we see her.

·         She doesn’t always find my jokes funny.  Well, that’s actually nothing new.  I just wish I could blame it on the cancer drugs.

We have already been to PraxAir this morning to pick up the cold caps and the dry ice for the day.  I say “we”, but Deb sat in the car the whole time on a business call so it was really just me and JJ playing with the solid carbon dioxide this morning.  We have also been to breakfast (a quick bowl of oatmeal at Macrina Bakery) and we are now at Roy Street Coffee working at our respective laptops.  Actually, I’ve been in here for 45 minutes.  Deb just came in from the car, where she was on another business call that turned into two calls.  She is definitely back at work.

And in another couple of hours I will be back at work, doing cold cap service from noon until 6:30pm or 7:00pm, depending on when the Taxol infusion ends.  And then I get to play with the leftover dry ice.

Deb thinks I should add my Mad Scientist laugh to this, but we mad scientists don't always like to laugh on demand.  Besides, mad science can be serious business.

As consolation, here's a photo of our dog enjoying the sunshine.

Chemo Cubed

It’s Monday again, and that means … Chemo Day!!!  The day we look forward to (no we don’t) for the entire week (really, we don’t) and especially build up our anticipation (are you kidding me?) over the weekend as it approaches (Oh good grief no, no, no, no).

So Chemo Day always starts with us leaving the house at around 7:30 am after taking the dog out, feeding her, and apologizing to her that she’ll be cooped up for the next 8+ hours.  We drive from the north end of Seattle to the place south of downtown where we pick up the cold caps and enough dry ice to keep them cold throughout the day.  I’m going to have to leave JJ at PraxAir one heckuva Yelp! review for his help in this.  And maybe a plate of homemade cookies.

Next on the agenda is breakfast (and COFFEE!!!) somewhere either south of downtown or on Capitol Hill before holing up in a coffee shop so she can get some work done on her laptop until her infusion appointment at around noon.  I split my laptop time between this blog and working on a presentation I’ll be giving in May.

Then we actually go to the infusion center.  Deb’s oncologist always wants to see her first to go over any issues from the last week and to review Deb’s most recent bloodwork (which she has drawn on Friday afternoon).  Then we go back to the party infusion room and get Deb a chair while the nurse puts a needle in the port and I get Deb’s cold cap stuff ready to go (there’s about 10 to 15 minutes of work that goes into that). 

The first chemo drug is Herceptin for 30 minutes, so she gets to start getting her freezy-head during that before they start with the taxol - which lasts for the next hour - all the while changing out caps every 20 minutes.  After all that, they pull the needle from the port and kick us out (“Not so rough! Please!”).  We head back to the parking garage and change out the cap one more time before getting in the car and heading home, all with the hope that traffic will allow us to make only one change-out stop before we get home.

Once home I make up with the dog (she’s fairly forgiving) and continue to help with cap changes for Deb (while she keeps going on her laptop doing work) until four hours have passed since the taxol infusion ended.  Then Deb is free to thaw out her brain, we get dinner of some form or another, and then I take the dog out for a long walk while Deb collapses into a puddle of goo.  Or she might come with us.  Depends on how she feels, but even if she goes for the walk, the puddle state will come soon after we get back.

And that’s our Mondays right now, with the little minutiae of life thrown in along the way.  So today I started this post at the coffee house, and I’m trying to finish it up now while Deb is getting the initial pre-medications before the Herceptin begins.  The first cap is on and the second one is on deck, so to speak (if you like baseball metaphors).

And for those of you keeping score at home, today represents 25% of the way through the 12 weeks of taxol.

Heigh Ho, Heigh Ho, ...

Today is the day that Deborah returned to work.  She’s been squirreled away in her office since early this morning going through email and making phone calls, et cetera.  I likely won’t see or hear from her until lunch, if then.  Of course she has to come out at some point to go have her weekly blood work draw performed.  Yet another joy of chemotherapy, but they do want to stay on top of monitoring her white cell count, hematocrit numbers, platelet counts, and so on and so forth.

It wasn’t a bad week for Deborah overall.  Monday was her second chemotherapy session, so we loaded up the cold caps and headed downtown to go through the 2 to 3 hours of that.  Of course the cold cap wearing continued for several hours after the infusions were done again this week.  Happily we didn’t have to stop for a change-out more than once on the way home.  The biggest traffic delay we hit was just getting out of the parking garage (I think they had a new person working the booth and they were having trouble figuring out how to deal with credit card payments – I paid cash to be safe).

It’s been rather pleasant weather for the rest of the week.  Deb and I have tried to make certain that we get outside and walk for a little while each day to keep her active.  We went to the Japanese Gardens over at the University of Washington Arboretum on Wednesday.  Deb had been wanting to go since we moved here 6-1/2 years ago, but we never actually made it until now.  It’s a nice little walk in beautiful surroundings and I know she found it relaxing.

We also got out last night and walked to Saltoro, which is a nice restaurant just under a mile from the house.  It’s the only decent restaurant that is within walking distance, so we tend to go there at least once a month or so, except that we had to drive there last month (Deb wasn’t yet up to the walk and it was also colder and windier then, which is not great for someone recovering from major surgery).

The only other thing of note this week was Deb’s visit to the physical therapist yesterday.  While she still has a way to go, I think she’s made a lot of good progress this week with her range of motion – I’ve been helping her with the stretches every day.  The therapist confirmed her pleasure with Deb’s progress so far and gave her a few more things to start on.  I know from personal experience that physical therapy is a long process, though, but Deb at least has made a good start.

But how will she be feeling after her first day back at work?  Only time will tell, though I expect that she’ll be fine.  I little worn out, perhaps, but I don’t think that would surprise anyone at this stage.