The News None of Us Wanted to Hear

Phil here, closing Kris’ blog on her behalf.  I’m a poor substitute for Kris when it comes to writing.  Actually, I’m a poor substitute for her in more ways than just that.  But enough about me.

On the the 2^rd of November we moved Kris to Arbor Hospice as her needs became more than I could manage at home with hospice help.  She received excellent care at the hospice Residence and was kept comfortable and pain-free as she declined.  I’m very grateful this option was available to us.

Kris died today at 2 in the afternoon on the second anniversary of our wedding.

Thanks to all of you who followed Kris’ blog. Your comments meant a lot to her. In lieu of flowers, it was Kris’ wish that donations go to Arbor Hospice, Humane Society of Huron Valley and Washtenaw Bicycling and Walking Coalition, the choice being yours.

There will never be another like her, but you all know that.

Peace, -Phil

Back to the Future

But I can’t die, I just bought a new shower curtain — and it’s really nice!
- actual thought that went through my head

Well, we all knew the time would come for grim(mer) news.  It’s difficult to know when you’ve received the very  grimmest until all is said and done, but events over the last few weeks have been less than encouraging to say the least.

When I last wrote, I was semi-excited to be starting on a regimen that let me do most of my chemo at home, in pill form.  That all seemed to be going nicely enough for a month when, the afternoon before my next doctor’s appointment I developed a violent case of hiccups, which segued into what you might call “Technicolor hiccups” that night.  I mean all night long. So it was not too surprising  for my wet rag of a self to get the bad news that “the number” had really zoomed up since my last visit, and that was it for my stay-at-home chemo pills.

My next new treatment is actually an old treatment: the same drug combo that got me into remission in the first place.  Which might seem like a great bet, but at this stage of the game the odds of success go lower, not higher.  There is some evidence that waiting this long and giving these drugs in low doses (every damn week again) is effective so that’s what we’re trying.  I don’t know why low doses of carboplatin and taxol should be giving me such trouble when they didn’t before, but am really having a hard time staying on top of the nausea, exhaussion (and reflux!) this time.  I think it’s because part of the nausea is symptomatic and not just caused by the chemo, but right now I think I’m taking something like 7 anti-emetics, some intravenously, some swallowed, and some dissolved under the tongue (which, bizarrely enough, is pineapple flavored.)

A new addition to our house lets me get the IV stuff from the comfort of my own home.  My last tests showed me to be somewhat dehydrated so the next thing we knew Home Med had dropped off a big box of supplies and over the next few days some Michigan Visiting Nurses had come out to show us (Phil, mostly) how to use the IV pole and everything else.  No needled sticks required since I already have a port, just lots of sterilizing and hooking up tubes and flushing the port.  And it lets us add the IV anti-nausea med too.

In case it’s not obvious, I’m not working anymore – am officially on Social Security Disability, in fact.  It was rather alarming how easy it was to get that after all the stories I’ve heard otherwise.  Apparently, there’s one point that the Federal govt. can agree on, and that is that people with this diagnosis are pretty much screwed.

After two treatments, I wouldn’t describe myself as cautiously optimistic, or any flavor of optimistic at all.  Full disclosure: we had the nice hospice lady come out to visit and give us the lay of the land.  We figured better now than at the last minute.

In the meantime, I’m enjoying watching a long-awaited garden bed being installed next to the front door – even if I may not see it come in fully grown, I know it will.

I told you so

Keep meaning to post and keep not posting.

There are times when saying, “I told you so” doesn’t make you feel particularly good, and this is one of them.  Last month’s iffy-sounding (to me) “stable” did indeed turn into yet another regimen change this month, due to another rising CA125 value and a few symptoms prior to that.  The good parts of the new regimen include:

• no more neupogen shots
• only one infusion (with my old friend Avastin) every three weeks, instead of three infusions every four weeks.  Even though I live nearby and don’t have that much going on otherwise, this is a big deal for me as, lately, just walking into the place makes me feel kinda sick.  No offense to the designers of or fine people at the U-M Cancer Center.

I’m still not sure about the other part, which is taking a Cytoxan pill (hm, think it might be toxic somehow?) daily. Have been taking it for a little more than a week and am still sorting out side effects.  After a rough first few days that had us considering a trip to the ER, things seem to be more manageable  — I don’t even need to take anti-nausea meds with it now, just lots and lots of water.  So, all in all, it is probably gentler than the Topotecan it is replacing, as promised.  It has the usual list of potential side effects (hair loss, of course) with the quirkier addition of: darkening nails.

As for the symptoms, they seem to be telling me that I can only eat liquid or very close to liquid foods now.  If I stray, I can get 24 hours or more of pretty spectacular cramping.  Yes, “there’s a drug for that” and it works pretty well, but of course it has it’s own undesirable side effects.  So, a real balancing act, but at least soup season is upon us, if rather early and suddenly.  Oh, and my stomach/GI system is now insanely noisy much of the time.  It’s like someone built a water park in there.

In the midst of all this, I did manage to score an end-of-summer, hot-weather swimming trifecta last week: a visit to Independence Lake on Thursday with good friend and fellow traveler A.; a trip to Silver Lake with Phil on Friday; and a walk to Vet’s Pool on Saturday afternoon through Ann Arbor’s weirdly silent and empty  streets (opening game of football season for those not in the area) for their last weekend of the year.  This last only included a few dips in the pool before the staff called everyone indoors due to thunder and rain.  They let us go in the water again briefly before the same storms that caused U-M’s game to be called in the 3rd quarter chased us out for good.  Luckily I was able to catch a ride home with a neighbor as it dumped.

I must have been feeling cocky that evening as I ate a child-sized potion of  (*gasp*) macaroni and cheese for dinner, and paid for it for the next day or so, causing me to miss some opportunities to socialize with some friends near and far-ish.  But we will keep trying, even if it means I drink nothing but clear liquids for a day prior.  Gin and tonic, it seems to me, should qualify…

You say stability, I say…OK, sure, stability

So, at my last appointment, doc said I had “stable disease.”  Which is weird, because I can’t remember the last time I was even near a stable.  No wonder I’ve been feeling a little ho(a)rse.  (Sorry.)

(But interestingly, Avastin is known to affect the vocal chords, and sometimes my voice does sound like I’m ancient when I feel fine otherwise.)

Now, to me, the actual numbers do not reflect anything resembling stable, but he’s the expert so it’s not like I’m going to argue with him.   Stupid numbers — why do I even look at them?  He mentioned that for future treatments we could try swapping out one of the agents with a “gentler” one.  At the time I was just coming off my two-week break, feeling good, and wondering why I’d even want to consider changing something that’s working, but another rather hard-hitting treatment last week has me considering it.  If nothing else, perhaps it will restore the outer halves of my eyebrows.  Then again, it could erase them entirely and the hair on my head too.  But the important thing to me is that it now looks like I should achieve my modest goal of having a pretty good summer, as defined by no hospital stays (testing the jinx gods here) or really bad news.

In other developments, the “marihuana” that I’d hoped would prove useful when I’m  affected by nausea has not, so far.  Mainly because when I’m feeling that way, even just a little, I have zero desire to ingest it in any of its many forms.  Even the lollipop was kind of “ick” last time.  When you get right down to it, it’s a pretty skunky-tasting lollipop. So for now I still rely on the big gun, Zofran (of the Hill People), but as it has its own side effects that I’d prefer to avoid, I’ll still try to work the ganga in somehow.

what now?

Speaking of lollipops, we spent the July chemo-break at a cute little cabin on a bluff overlooking Lake Michigan, just north of Holland State Park.  During one of our lazy afternoons on the beach, this guy was really psyched to find a sucker (not one of mine – that would be mean) but then spent an entertaining ten minutes trying to figure out what to do with it before giving it up to one of his cousins to puzzle over.

Can you spot the hummingbird?

In other bird-related news, there was a dead branch near our deck that was a favorite for at least one hummingbird.  I had never really seen one at rest for so long and didn’t realize how partial they could be to one spot on one branch, so it was a treat to be able to look up at any time of day and know that he or she would  show up eventually.  (I was only ever able see it in silhouette so if you tell males from females by color I was out of luck there.)  If you click on the picture you might actually be able to see the little bug-eater.  We had virtually no mosquito issues and I give him/her/them full credit.  Huzzah for hummingbirds of all colors and genders!

We HAD a TV but watched this instead

And yes, there were gorgeous sunsets.  And cool evening breezes and thunderstorms every night so we only had to use the A/C in our bedroom the first night we got there.  We were there during the “heat dome” week that had everyplace else frying so we were really happy with being able to get this place at the last minute.  Visits from some good friends at the end of the week really “zet de kers op de taart” (that would be Dutch for “put the icing on the cake”, at least according to Google.)  Not having Internet  or cell access (without a 100-yard walk down the road)  also made it special, though we missed the last week of  Tour de France and at had to watch five stages in a row when we returned on Sunday, which I actually recommend if you can or must stay “TdF-free” for any length of time.

All in all, much walking on the beach, hiking through the woods, floating in the water, and reading of words printed on paper occurred, so I deem it a very successful break.

Steady as she goes

“Sometimes you get so high, you can’t even eat your dinner.” – Graffiti in the men’s room at a Sarnia bar in the 80′s, as reported by Stanley Frank Wilkinson

First things first:  last doc visit showed the all-important CA125 number holding steady, so I guess substitute doc was right that one jump doesn’t have to mean it will keep rising.    As always, we like down better, but since I was kinda resigned to an up, steady is just fine.  Immediate implications: stick to same regimen for this next month, and we don’t have to immediately go scrambling to find and get into a clinical trial.

So I’ve got two of the three sessions under my belt (last one was surprisingly rugged – there’s just no predicting), then another this Thursday, then FREE for two weeks.  This time we really intend to take advantage of the break by doing a little traveling.  Nothing major, probably just head to someplace on Lake Michigan.

That opening quote refers to a new avenue of treatment I’ve been pursuing, now that MI has a medical marihuana (yes, that’s how they spell it) law.  I am now licensed (though they are so far behind on requests that I’m told my actual card won’t arrive for 6 months) and have visited one of many local emporiums.  Odd experience to have everything laid out for you like that, with Josh the helpful “budtender” ready to advise and answer questions,  and to leave with a little bag of very pricey cookies, brownies, and lollipops.  So far the lollipops seem to do the best job of taking the edge off minor nausea.  I learned I do not need to eat a whole portion of any of the other edibles;  the first time I did, I actually got so, you know, that I couldn’t make myself get off the couch and eat dinner.  Not the effect you want when you’re trying to stimulate appetite, so more experimentation is needed there.  I do know that it will be a very effective sleep aid for me if I need it.

Opposite of down

What a difference  a few weeks makes.   Am sitting in our not-air-conditioned house at 81 degrees with a  fan blowing on me, hoping that the predicted rain actually hits this time.  C’mon, rain-deities, all these plants are not gonna water themselves!  The house is actually not too uncomfortable now (I like heat) but, later, when it’s supposed to hit mid- to high-nineties outside, I plan to take refuge at a friend’s A/C’d house.  The cats will be shut downstairs where it’s cooler, as they don’t seem to have the sense to stay down there otherwise.

In other news, the appointment and treatment last Friday could have gone better.  Substitute Doc — my regular oncologist was out on paternity leave — informed me that my CA125 count, that number that we want to proceed ever downwards, had in fact proceeded upwards.  And by a not insignificant amount (my opinion, not the doc’s).   Substitute Doc  was quick to inform us that the number sometimes rises and then falls again; what is important is the overall trend.  He even drew us a little jaggy chart to illustrate this concept.  Part of me took him at his word, but another part of me noted that it’s never worked that way for me before.  And yet another part of me thought that Substitute Doc just did not want to have a difficult discussion with me and preferred that happen with my own doc next month.  (I should probably be more respectful about Substitute Doc, as he was fine and also happens to be head of the department, but you really get used to your own doc and I really like mine.)

At any rate, we stuck with my same two chemo agents in the hopes that the rise was just a blip.  For some reason I started out that day not feeling that great and having the infusion did not help at all.  Without going into too much detail, I went from one extreme to another GI-wise over the weekend and (ok, this possibly qualifies as too much detail) even puked for the first time since winter.  Was feeling much better by Monday, but the whole thing emphasized to me that this is the first time I’ve been in chemo during spring/summer.  It’s one thing to lie around feeling icky when it’s cold and icky outside, but a bit harder to take when it’s nice out.  Really hoping that was a fluke and this is not how it’s going to go every time.

And that needling my elbow thing they did a few weeks ago?  One ortho doc had said I would know in two weeks or so whether it was successful or not.  Experiencing the same amount of pain and an actual decrease in my range of motion after two weeks, I was ready to deem it a failure, but then another ortho doc said I really needed 4-6 weeks of PT before we would know if it helped.  So I’m now adding twice-weekly PT sessions to my once-a-week infusions.   While I’m not too thrilled with that, at least it gets me out of the house, and I actually love going to the PT place because it also houses three big ice rinks – always easy to find something fun to watch.  Meanwhile, if a mosquito bites me on the upper part of my left arm, I have to rub up against a tree or something to scratch it.  And after the spring we’ve had the mosquitoes are surely going to be plentiful this summer.  I will just try to believe the bites somehow have anti-cancer (and tendon healing) properties.

Rain and Stuff

You’d think that being a virtual shut-in since December would have me hating  the endless waves of rain showers and storms that have rolled through SE Michigan since spring arrived.  And I’ll admit to being pretty depressed by it when it was still cold and before things started to grow — it was mighty hard to motivate myself to get outside and do anything under those conditions.

But as of now I absolutely love the sound of rain pouring down on the roof (our attic-less house makes it all the better) whether it’s the middle of the night or day or, especially, when I wake up in the morning.  I realize this last has to do with the fact that I generally don’t have anyplace in particular to go in the morning so I can stay there as long as I want, just enjoying.  Being off work for cancer treatment doesn’t have many upsides, but being able to sleep in is one of them, and I take full advantage of it.

Nature! Right outside the window!

Even in the middle of the day, when I could (should!) be taking a nice long walk or otherwise enjoying the outdoors, I’m still digging the rain because it has given us such an astonishingly verdant environment this year, in our yard and all over the place. I may be wrong or just more observant than usual, but we have a spruce that has about ten times the new growth it usually does, in much more vibrant colors.

Are those your new pinecones are are you just happy to see me?

We can’t recall ever having bright red baby pinecones before, and I’ve noticed other trees — especially evergreens –  in the neighborhood just bursting with new life.

Plus, I can’t help it, I just enjoy the cozy feeling of being in the house when it’s raining or storming out.  Yesterday it occurred to me that, hey, I am/was a cyclist in possession of good rain gear.   I will wait until it rains, and then go outside for a walk, maybe  take some pictures and prove I haven’t turned into the kind of fair-weather human we (cyclists, Ultimate players, other outdoorsy types) would sometimes, er, consider derisively.  But there I remained, typing and listening once again to the rain drumming on the roof.  At least I have managed to not turn the furnace on.

(Here I should acknowledge the there have been some pretty serious problems around here caused by all the rain, not to mention the fact that my intrepid husband has had to constantly dodge heavy downpours on his bike rides to/from work.  If you’re personally affected by all this moisture, sorry.)

But me, I’m also enjoying the rain because last weekend some good friends came to the aid of this one-armed* gardener and helped me get my deck all planted up.  It was a hot, sunny day but a strong breeze made it not too stifling.  Many hands made fast work (at least it seemed that way to this mostly-observer) and I can’t wait to see how everything looks when it has a chance to grow in a bit.  A solid week of rain sure won’t hurt.

Before...	One-ton bag of potting soil? No problem!
The weird box I found at the ReUse Center gets prettied up	You like-a portulaca?
Getting there...

*I’m contractually obligated to cover medical topics in these posts, so I’ll mention that, after waiting for two weeks, I finally e-mailed all the Onc, Medsport and Radiology docs involved and got the OK to have the obscure (in terms of Internet searching at least) fenestration procedure on my elbow while I am undergoing chemo. That happened on Monday and went as well as can be expected, I suppose. At least the radiologists who were needling (that is an actual term used by one of the docs) around in my well-anesthetized elbow for ten minutes seemed to be making lots of positive sounds about how things were “loosening up.” It will be a few weeks before I know whether it was successful –at least it doesn’t hurt any more than it already did .  I just want to be able to ride a bike, and eat/write/type/scratch my head with my right hand again.