Another Day, Another ...

Deb didn’t have the greatest of weeks since the last time a Monday rolled around.  Oh, it could have been a lot worse, but it wasn’t exactly all rose petals and bon-bons.  The chemotherapy itself wasn’t really to blame.  At least not directly.  No, the most difficulty has come from the port.

For those who might not be familiar with exactly what a port is and does, I’ll try to keep it brief.  It is basically just a nice convenient place for the insertion of an IV needle for when you are going to have to have that done a lot over a period of time.  It’s a small piece of plastic and silicone about one inch in diameter and a half-inch thick that’s placed a few inches below your clavicle (or in your arm, or somewhere else entirely) just below the skin.  It’s connected to a tube that goes straight into the nearest vein, which in Deb’s case is the sub-clavian vein.

I don’t think that the port itself is the problem, though it is darned inconvenient.  No, the trouble is mostly that while Deb was mentally prepared for the pain of the double mastectomy, she didn’t prepare herself for the pain associated with the surgery to have the port installed.  And, it seems, it is stretching skin in an area that was already feeling tight post-surgery.  It’s like insult added to injury (“I broke your arm in three places and, oh yeah, you’re so stupid you think Meow Mix is an iPod playlist for cats….”).

But I think it’s getting better.  Deb took a few of the prescription meds they gave her for the first few days, but she’s only been taking Tylenol for the last several days.

And, for those who’ve asked, her stamina, while it took a back-step after the port went in, is starting to improve again.  We managed a short walk around the block yesterday during the half-hour when the sun was actually out.

But today it is Chemo Day again.  We got up early to go get the caps and the dry ice (big ‘Thanks’ to JJ at PraxAir for all of his help) and then grabbed breakfast at The Wandering Goose up on Capitol Hill, followed by a couple of hours doing some laptop time at the Roy Street Coffee House.  Now we are back at the infusion center getting geared up with the caps and the infusion of Deb’s first run of chemo drugs.  The first cap change-over is complete and the Herceptin has started.  That will go for 30 minutes and then the Taxol will begin and our true time clock with the caps gets going.  I just hope it doesn’t take us as long to get home this week as it did last week.   Really don’t want to have to change the cap out more than once along the way.

Thawing Out

So it turns out that the hardest part in the ice caps process for us wasn't how well Deb was able to tolerate the freezing of her scalp (she actually tolerated it quite well) or the hassle of dealing with the doffing/donning of the caps in the infusion center (which was a bit of a hassle, but I think we got the system down as we went along).  The hardest part was the trip home.  We still had to keep Deb's scalp chilled for another four hours after the Taxol infusion was completed, so we knew that we would have to change the cap out at least once on the way home.  I had even packed one cap in a smaller cooler of dry ice just so it would be more accessible when we pulled over to do a change (hopefully without having to actually get out of the car to do the change).  When we got to the car in the parking garage we made one more changeout so we could hit the road with a fresh cap.  With any luck we could do the first change at 20 minutes and have another 20 minutes to get home before the next one.

I was reminded quickly of the old Army quote, "No plan of battle ever lasts past first engagement with the enemy."

The Interstate was a complete parking lot.  I expected traffic to be heavy at 4PM on a Monday, but this was something special.  I wasn't even able to get out of downtown before we had to pull off of I-5 and make the (first) change.  Less than 2 lineal miles in 20 minutes, as it turned out.

So I thought that if we hopped on the I-5 express lanes we might - might - be able to make it the rest of the way in time.

Let me just say that I have never seen the I-5 express lanes come to a complete stop going north before they even crossed the ship canal bridge.  Until yesterday.  I exited via the University exit lane.

To make a long story shorter, I drove through the city surface streets instead and made two more stops along the way.  What usually takes me 30 to 35 minutes at that time of day took a little over an hour.  I never heard what had the interstate and its express lanes so tied up, but I did hear a lot of sirens as I passed back under it, so it must have been big.

We kept changing out the caps at home until 7:30PM when it was time to quit and let Deb defrost the brainpan.  She was a bit sore from the port installation, so she ended up taking a painkiller they'd prescribed for that as we ate a small dinner and then she conked out on the sofa.  Considering that our day had started at 4AM, I think we both deserved an early bedtime, so I ushered her upstairs to bed at around 10PM and I probably ended up falling asleep not long after she did.

So, one down, sooo many more left to go.

Frozen in Time

First off, let me say that I just spoke with Deb on the phone and she's feeling fine.  Of course, she's still in recovery, so she still has good drugs going through her system so she doesn't feel pain yet.  One of the recovery room nurses was nice enough to call me and then put Deb on, even though I'm not allowed back yet.  Ain't technology wonderful?

I had only just gotten back to the hospital a few minutes before.  I had a mission. To pick up some dry ice.  For Deb. Yeah.

Right after Deb gets out of the recovery ward, we'll head over two or so blocks to the Madison Clinic.  For her first chemo infusion. Yeah, I know, right?  She can't wait to try out that new port.  Chemo will start around noon or so, but I hope to be able to get Deb a little something to eat before that (since she couldn't eat after 10pm last night before surgery this morning).

But at least I already have the dry ice.

What's that for, I heard someone in the third row ask?  Excellent question.  That's for those lovely cold caps Deb will get to wear during chemotherapy treatments in the hope of keeping her hair from falling out.  The premise is that chilling the scalp constricts the capillaries around the hair follicles so the chemotherapy drug (Taxol) won't get to them during infusion.  Will it work?  Maybe?  Probably?

But they have to be kept really cold.  Really, really cold.  Like -25 F cold.  Hence the dry ice.  Carbon dioxide has a freezing point below -80 F, so it will keep those caps nice and cold for a while.  But once we put one on her head (after waiting until it warms up to -30 F or so) it warms up pretty fast, so we have to change them out every 20 minutes or so.  We have eight caps that I will circulate through the cooler to re-cool them.  Deb has to wear one for 45 minutes before chemotherapy starts, for the 150 minutes of infusion, and for another 180 minutes after infusion ends.  Do the math and you can figure out how many times I'll be changing those things out.  A pain, to be sure, but worth it to her if she keeps her hair.  And if it's worth it to her, I will do what I can to make it work.  At least I'm not the one wearing the things.

(Not Tele-)Ported

This morning we are sitting in a day-surgery prep area at Swedish Hospital waiting for Deb to be taken away from me again. This time her surgeon will be placing a port for the chemo infusions. A port just makes it a lot easier to do the infusions than to have to put in an IV line each week for the next three months. I'll be posting more later today about a lot more than this. There's a lot more to say that I just haven't had time to post about since last time. So tune in again later. Same Bat-time (not really), same Bat-channel.

New-fangled Entangled

As alluded to in the previous post, there are several follicle-cell cooling devices being marketed for the reduction of alopecia in breast cancer patients receiving chemotherapy treatment.  In plain english, that means that companies can sell or rent cold caps for women on chemo to try to limit or prevent hair loss.  OK, it doesn't do anything about the cancer itself, but it can certainly help with the preservation of a little dignity.  After losing the breasts, losing the hair is just a little (or a lot to some) salt in the wound.

The cause of hair loss is that one of the drugs used - Taxol - acts on cells that are undergoing cell division to kill them instead of letting them divide.  Cancer cells are characterized by the fact that they divide and reproduce very rapidly compared to most other cells.  Most.  Other cells that divide rather rapidly?  Hair cells.  The idea is to chill the blood vessels thus restricting blood flow to the hair follicles to the point that the taxol doesn't get a chance to act on them (Taxol only really works while it's in the bloodstream during infusion and for a little while after until the body processes it through).

There are two (at least) caveats that go with the cooling caps.  First off, they aren't 100% guaranteed to work.  But what is?  Still, depending on the study you look at, they are up to 88% effective for women receiving Taxol without also receiving anthracycline (another drug that causes hair loss).  Deb isn't going to be getting anthracycline.  But that's 'up to' 88%.  Some studies had lower numbers, but mostly over 60%.  The other caveat is discomfort while using them, but who wouldn't want a -25 degree F block of ice strapped around their cranium for about 5 hours?  Talk about brain-freeze.  I prefer the kind where I at least get ice cream.

But we've discovered that keeping them cold is the hard part.  There aren't many chemo clinics (or any, in Seattle) that have freezers to keep them cold, so they don't offer the caps themselves at this time.  Deb and I are sourcing our own caps.  She has contacted a company that rents them by the month along with a handy cooler, but we have to supply our own dry-ice.  Deb has also found a company in Seattle that will not only be able to supply the dry-ice in the quantity and configuration we'll need, but they are also willing to let us show up before they close on Friday afternoon and put the caps in their freezer over the weekend - we can pick them up with the dry-ice first thing Monday morning (very helpful since Monday will be her infusion day and the caps need to be on ice for at least 24 hours ahead of use).

I had offered to design a cooling system myself that would incorporate a circulating refrigerant through a special helmet system, and Deb was interested when I pointed out that special design features would have to include speakers for the integrated sound system (with the 40 watt subwoofer for full bass response), a disco ball (for ambience), cowbell, and - of course - more cowbell (because it needs it).  It would also be able to dispense frozen yogurt in five flavors, but alas, it will never come to be.  She declined when I told her it would weigh around 400 pounds.  Maybe if I offered it with an optional espresso machine attachment?

Targeted

Decision day was upon us.  And no, I’m not talking about the political primary elections.

This morning we went to see the oncologist for the third time since this diagnosis was confirmed back in January.  Before the appointment – both last night and this morning – Deb and I have been discussing which way she should go.  Chemotherapy?  No chemotherapy?  We were decidedly on the fence.  Partially that was because we still had a few questions.

Then we met with Dr. Ahmed (the aforementioned oncologist).  She didn’t answer all of our questions, but I think she did answer all of the ones that she could.  Somewhere in the hour that we spent there we came away with the decision to have the port placed next week and begin chemotherapy sometime around March 21^st.  I’m still not sure exactly how the decision came about (and I was there!), but it did.  She will begin with a targeted course to chemotherapy that will consist of weekly infusions of Taxol and Herceptin for 12 weeks followed by infusions of just Herceptin every three weeks for the remainder of a year.

There are some caveats to go along with that, though.  At the first sign of any significant Taxol-induced negative side effects (and the one Deb is worried most about is neuropathy), the Taxol course will be discontinued.  Also, if the cardio-monitoring she will undergo indicates any signs of the onset of cardiomyopathy, the Herceptin will be discontinued.

This list of side effects that will halt therapy does not, however, include hair loss.  That’s just something that the majority of patients just have to deal with … until recently.  There is a new option for chemotherapy patients that might prevent hair loss during treatment. 

Cold caps have been shown to have some amount of success at preventing hair loss and have only recently (meaning within the last couple of months) been granted FDA approval.  A cold cap is just that – a cap that keeps your head cold.  The idea is that, by applying deep cold to the scalp for a period of time before, during, and after treatment, the cells in the scalp where the hair follicles are do not take up the Taxol and are thus unaffected.  The success rate isn’t 100%, but it is high enough that some people are willing to put up with the pain (and it can be painful) of the scalp deep-freeze.  It’s too new for any of the local chemotherapy clinics to stock the necessary caps and refrigeration equipment.  It’s also new enough that insurance isn’t likely to cover it.

Deb and I are looking into dealing with the cold caps ourselves.  There are some companies that will rent the caps and coolers on a monthly basis, but we’d have to be able to source dry ice ourselves in order to keep the caps cold enough.  Renting them isn’t exactly cheap, but some companies have more reasonable prices than others.

Will it work?  I don’t know whether it will work if we decide to go that route, but if we do and it doesn’t, we have a bit of a backup plan.  We stopped by Target on the way home from the appointment to get a couple of things we needed.  After we checked out Deb looked at the back of the receipt papers to see what the printed coupons were.  One of them was for Women’s Rogaine.

               [cue eerie music]  

HOW DO THEY ALWAYS KNOW?!?  

               [fade to foggy background]

We Couldn't Think of a Good Title So You Are On Your Own for That

Yesterday we saw Deb’s surgeon for a re-check appointment.  Deb’s main questions for the surgeon were concerning her need for physical therapy to regain strength and range of motion in her arms (she does need it) and what to expect with the placement of a port if we decide to go the chemotherapy route. 

As for chemotherapy, we’re still on the fence about that.  If you look at one study, they tell you that, for Deb’s tumor size/type, chemotherapy isn’t really recommended strongly due to the possible severity of the side effects.  The next study says the opposite.  The next study says something like “Well, maybe, but only if you sacrifice a marmot at 2:17 AM during a full moon of a month with a ‘u’ in it”.  OK, I actually haven’t seen that exact text, but after reading through a pile of medical studies it isn’t that hard to imagine.

We go back to the oncologist tomorrow.  We will probably have to give her Deb’s final decision at that appointment.  Which way is Deb leaning?  I don’t know - what hour of the day is it?  Is there a marmot nearby and is the full moon coming up?  Oh, and that would have to wait until June anyway … or read the next study …

In an attempt to give Deb a nice diversion I took her to a tearoom that we know of near where her appointment was yesterday.  It was a good thing that I did, because we found out that they are closing at the end of the month.  We hadn’t been there in over three years, but somehow got there just before they disappear forever.  How random.  Much like the results of 15 or 20 different medical studies.

Tempus Repit

Today’s post title reflects the opposite of ‘Tempus Fugit’, or “time flies” in Latin.  No, time did not fly these last few days.  It crawled on its belly, undulating along like a snail through a puddle of blackstrap molasses.  But we’re into the weekend now and trying to take a bit of an emotional respite.

We went to two appointments over the last two days.  The first was at the University of Washington on Thursday for ‘genetic counseling’.  That’s basically where they looked at the results of the genetic tests Deb took and said “nice to meet you, but we really don’t have anything to tell you that you didn’t already know.”  To be honest, that’s what we expected when we went there.

Yesterday was a different story, and led to the aforementioned and belabored Latin lesson of a title as seen above.

We, and especially Deb, had expected that yesterday’s appointment would help provide some answers with regard to decisions on whether her further treatment would, in fact, include chemotherapy and what type of course it would be.  We’ve already established that radiation will not be necessary and that long-term hormone therapy (via Tamoxifen) will.  No, answers were not forthcoming quite so easily as that.

Yesterday we went to Seattle Cancer Care Alliance (SCCA) for a second opinion consultation.  We arrived at SCCA at around 11:30 am to check in.  We got into a room not long after with the expectation that we would be there for a while during the whole process.  The schedule was to have a quick medical history review and exam with one of the residents followed by a check of Deb’s range of motion by the physical therapists, followed by Deb and I disappearing for lunch for an hour at 1:00 pm.  While we were gone to lunch the team assigned to Deb’s case would meet with the teams assigned to three to five other patients and discuss each case in a sort of roundtable format.  Deb and I would return to the same room at 2:00 pm and the team would come in for a general discussion, followed by individual discussions with the radiation oncologist and the medical oncologist.

And that was what actually happened, really.  But they weren’t able to give Deb anything in the way of a definitive recommendation.  Again, her tumor and tumor markers put her right smack dab on the fence of go/no-go for chemo.  She could decide not to do chemo and accept the relatively low (but not insignificant) risk that the cancer comes back somewhere else, which would be a lot worse than just breast cancer.  Or she could pursue chemo and reduce the chance of recurrence elsewhere in the body, but then come the potential for very unpleasant short-term and long-term (or possibly even permanent) side effects.  None of the oncologists are willing to say, “You should definitely do ... [fill in the blank] ”.

But a new wrinkle popped up at SCCA for consideration.  There is a drug trial that Deb could try to get in on.  If she ended up on that drug, the side effects would not be the same as with Taxol/Herceptin (the normal course of chemo), but there are other side effects that could come into play.  So now it's chemo/drug-trial-chemo/no-chemo.

Decisions, decisions.  Needless to say (but I’m saying it anyway) that all of this is exhausting to think through.  Add in that we spent almost five hours at SCCA and you might understand that Deb was drained both physically (she is only three weeks post-surgery, after all) and emotionally.  We stopped for a coffee and cupcake at Cupcake Royale on the way home, went home for dinner, and then crashed on the sofa watching old episodes of Greg the Bunny on DVD so she could put it all out of her mind for the evening.

But the decision still looms large on the horizon, like a dark, angry-looking cloud that you know will leave you soaking wet, but that you can only hope doesn’t strike you with lightning in the process.