Archive for May, 2010


Sleepytime Station

I have been sleeping.

A lot.

Typically, with chemo on Monday, Wednesday and Thursday are big sleep days for me. This week, I spent most of both of those days sleeping, but also Friday I got up around 10:00, and went to bed at 10:00, after taking several naps.

Today, guess what? That’s right, yet another day of major sleep. I got up around 7:30, fed the dog and myself breakfast, then fell asleep in my recliner until 10:30 (I only stirred around so Brian could feel like he was allowed to make noise). I had a glass of iced tea, closed my eyes, and woke up at 1:15 when Brian headed off to Costco and Petco. I then slogged my way upstairs, where I lay down from about 1:30 – 5:30. We had to put my library steps next to the bed because my knee won’t take climbing on the bed using the footboard.

While I was down at various times during the day, I slept through the dog going ape over the neighbors across the street opening their garage door (now *there’s* a threat!), through Brian cleaning spots where mud got tracked in, Brian putting groceries away, and a few other noisy things going on. The thing I was having trouble sleeping through is some liver pain – I don’t know if it’s the good kind or the bad kind. The good kind would be the “tumor’s shrinking” kind, the bad kind would be, well, obviously, the other kind.

I even slept through more weird dreams. I’m not sure I want to remember them, so maybe it’s just as well that I seem to have a block against remembering.

But tonight I ate dinner (I often haven’t been having dinner, usually just a late lunch), and I’ve bumped up my water intake by drinking a cup an hour. I’ve been feeling dehydrated, and I suspect all the sleeping isn’t helping.  But here I am at 9:30, after watching Men In Black, ready to go to bed. I’m trying to stay up until 10, but am not sure that’s going to happen.

Barely managed it, though.


What Dreams May Come

I’m not so concerned about those *after* I have shuffled off this mortal coil as I am taken aback at the intensity of some of the ones I have under the influence of either chemo drugs, pain medications, or the combination.

I usually don’t remember them, mostly I remember bits and pieces (this one involved a lost dog somehow, or that one was a scary one involving people being tied up, possibly in a home invasion scenario).

What I do remember is that they are often disturbing on some level, even if I don’t remember the specifics; I can still feel the fear or strangeness that pervaded the dream.

I’ve mentioned them to the doctor before, but Brian is lobbying for me to tell him again. I figure it won’t do any good if I can’t give him details, but maybe Brian’s right, and just knowing that they’re scary dreams will give him an angle to work with.


Regrets, There are Always Some

Many of mine are things that I *didn’t* do, although some are things I did do.

When I was quite young, my mom was taking me for swimming and diving lessons. I remember that the diving instructor was excited about my potential – mom said he was pushing me too hard, and that he was thinking I was Olympic material. I don’t know if that is true, but I do remember taking a dive, arching my back too much, and hitting the water such that it arched my back more.

I also remember seeing my mother freak out because I was hurt (I don’t know if I cried or just told them that my back hurt) and yelling at the instructor to save me, even though I was swimming to the ladder. I learned early, then, not to make a big deal when I was hurt, but I think I also absorbed my mother’s fears. Lessons were dropped, and I don’t know if I was the one who said I didn’t want to continue, because mom scared me out of it; or if mom was too scared for me to continue. I think early on she was a helicopter mother before there was such a denomination; which it’s too bad she later grew into not wanting to take us kids out for sports, dance, or anything else. I have no idea how much of that might be related to her fears, but I’m sure at least some of it was her alcoholic detachment to us kids.

Another example of not making a big deal out of being hurt was when mom & I were visiting her friend Mrs. Denning, and I was out on the corner of the block. A couple boys on bicycles came tearing around the corner and rode me down. They asked if I was OK, and I said yes, through my tears, and the boys kept on going. I waited until I stopped crying, thinking that would be the only sign of trouble, but of course there were marks, and maybe a torn dress. Mom went out to find the bicyclists instead of taking me home right away.

I was a shy child, and so I developed a dry sense of humor, where I sometimes would say something true in a serious manner that adults would take as a joke; mostly because I’d more often say outlandish things in a serious manner. This, by the way, is not a regret, more something that I still appreciate about myself; even though I keep it tight under control, because it can still get me into trouble occasionally.

Briefly I took ballet lessons – one of my friends was, and somehow I was invited to join. I remember very little of it, except complaining that I had a headache, which may or may have not been the case. If so, I think it was brought on by fear – even at that age I didn’t fit in, and I seem to recall a male dance instructor who was very demanding (and maybe a bit of a prima donna?), so it was probably fear.

In grade school, I took violin lessons, but I never caught on. I was too shy to practice in front of my family, and besides, I’d wanted to take flute lessons like the girl across the street. So after the first obligatory lessons, I never took lessons until piano in high school, when I was still embarrassed to practice in front of family, but managed to become good enough that I was the bethel musician several terms for the Job’s Daughters bethel of which I was a member. Although somewhere along the way I picked up playing the recorder.

When I was very young, I used to lock myself in the downstairs powder room and sing, because I thought nobody could hear me in there. How wrong I was! Finally my mom and older brother started teasing me about singing, what was I thinking about while I was singing in the bathroom? Just singing, of course. After that I made sure nobody could hear me by locking myself into the bedroom and turning on classical music very loud. Mom never even suggested I get singing lessons – I never asked because I was really entering my pathologically shy stage by then. Being ganged up on by mom and my brother didn’t lend itself to building confidence.

So many potential talents that were cut off from fear; the one I regret most is that I never took singing lessons – as it turns out I have a pretty good voice and a good ear; and my mandolin teacher says I have perfect pitch. Secondly, I wish I’d learned to play more than just the piano, and I wish I’d carried on with the piano, too.

So often life gets in the way, and you set things aside for something that seems more important at the time; or you put things off for the same reason. Long term, sometimes the new things are more important; but you should try to find time to continue working on the skill all the same, because it may become more important to you again in the future. The trick is to make the evaluation at the time of which is currently more important, and which is long term more important. And if you’ve stopped working on it, or delayed it, and a time comes when you miss working on that skill, don’t delay. Find a way to make it work into your schedule and your budget. Just do it.

Emily Rose, I heard your mom teasingly tell you to stop dancing everywhere; but I say dance everywhere, all the time. Just do it.


Robin – In Search Of: The Cube

Here, for you to watch while I’m off at the chemo “spa day”, is a video starring Robin and Brian demonstrating how Robin searches for his treat-filled cube. Because it was shot in one take, it ends up being a fairly simple search. We really need about 5 cameras, clip-on mics, and some editing software to turn this into a professional-looking video, so please forgive the faults.

Robin searching for his cube


A Granola Bar, a Little Whine, and Now . . .

It’s not fair!

I want to see Emily Rose dance the Sugar Plum Fairy. I want to see her graduate. I want to see her become a professional ballerina.

I *might* see the first; the last is probably right out, especially if she goes to college first.

Why do I have to have cancer? There’s so many things that I want to do. I want to go back to school for a Masters at least in literature, and maybe history. I want to fill my house with quilts I’ve made as well as give away a whole bunch. I want to knit my own wardrobe. I want to bead beautiful jewelry and have plenty of occasions to wear it. I want to keep learning to play the mandolin. I want to do some voice training, so I can at least hear the ghost of the voice I might have had if I’d had training when I was younger. I want to get back into shape (if not the shape I was in at 17, at least the shape I was in when Brian and I got married). I want to read so many more books. I want to play with the friends I’ve already got, and make new ones to play with. I want to travel. I want to get to know my nieces and nephews on both sides of the family, and get to know *their* kids. I want to continue my job where I left off, taking more responsibility for the event planning, and getting to know more about designing websites. I want to touch people’s lives, and be there for them the way so many people are being there for me in my time of need. I want to play with my cats and dog. I want to love my husband and spend a longer rest-of-my-life with him than it looks as if I’ll get.

And this is how I’m feeling 6 days after getting such excellent news on Monday. Guess it’s a good thing it wasn’t bad news!

OK, now that I’ve gotten that whine out (and had a granola bar), I feel much better. Don’t worry, Ma, I’m doing fine now.


Brian’s Knee Update, More Photos

Brian’s surgery on Friday went fine, and although there was a significant enough amount of pain for Brian to actually resort to the prescription pain pills on Friday evening/Saturday morning, by Saturday evening he was down to just ibuprofen.

It just amazes me that they can fix knees with three little holes in an in-office procedure these days – when my first husband had knee surgery, he was in the hospital overnight (at least), and has a big scar running down from the top to the bottom of his knee – I think it’s around 6″ long or so.

Thanks again to cousin Jeanette for taking Brian over and waiting with him while he had surgery. I’d planned on going with them, but as the week wore on, it became obvious that the chemo was still hitting me pretty hard. So I waited at home for them.

And because I don’t really have the brains this morning to blog about anything else, here are some pictures for your delectation.

Robin's definition of foot rest

And April the cat gets in on some of the action:

April's definition of back rest

We’re going to the ballet today, and I have to remember to wear a mask, since I’m probably immune-compromised at this point. I’ll know for sure tomorrow, but around all the kids, probably best not to take any chances.


Another Robin Video

This is one of his favorite pastimes, given the opportunity.

Robin licking Julie’s toes


Is Talking to a Person With Cancer Really That Hard?

I read an article the other day that was written by a woman who has been through breast cancer, and a recurrence of breast cancer.

The impression I came away with is that there is nothing you can say to a cancer patient that is going to go over well.

For heaven’s sake, don’t talk to them about how they look – if you think they’re looking poorly, don’t let on, because you’re likely to get “Well, of course, I have cancer, so I’m not going to be looking my best”; but if you complement them on how well they’re looking, they’re going to be upset, as if they think you don’t believe they have cancer “Well, thank you, but I feel like crap on the inside”.

Whatever you do, don’t mention either survivors or non-survivors – non-survivors remind them where they might be headed, and survivors remind them that they might not make it.

And who cares about what you’re feeling about them having cancer? Are you devastated to know your friend has cancer? Well, suck it up, because those cancer patients don’t have time to worry about you, there’s only room in there for what they’re feeling.

And don’t bother to send flowers or cards if all you want is acknowledgment of your kindness and generosity – cancer patients can’t make that kind of effort to say thank you for it.


Can you tell that this article rather set me off?

I’m sure that at least some of the author’s experiences warranted the kind of selfish, cruel responses she advocates, but were most people really being stupid as well as well-meaning? Probably not. I myself have run into a couple instances where someone deserved a cut, which I mostly avoided by responding kindly to their intended nastiness; but it was with people I didn’t know well, and at least one was a competing cancer patient who felt I was getting too much attention, and her not enough. I seriously doubt whether the people that this author writes about really were trying for glory by giving her flowers, or karma by telling her that they were so upset by her news that they were having trouble sleeping.

I have experienced the “Pity Eyes” the author refers to, but usually only from people who don’t know me well enough, or aren’t comfortable enough with mortality that they have no idea what to say to someone who’s just announced that they have cancer (for the xth time, even). There are times when those looks make me feel like the “Already Dead Julie”, but usually I handle them the same way that I handle the more confident people who express their shock/sadness/grief that I am back in the cancer saddle; with a smile and a thank you for the heartfelt wishes.

Because even those people who try to make me feel better by talking about how well I’m looking (and currently, other than being very bald and very tired, I *do* look pretty well), or who remark on how tired I look some days, have an unwritten text of “I hope you’re feeling well, and if there is anything I can do to help, just let me know.”

And the people that I have to comfort about me having cancer? They remind me how much I’m loved and cared about – anyone who is getting a hug from me is also giving me a hug.

How sad to live in a world where you perceive everyone in it for what they can get out of it – I know there are people like that in the world, but I guess I’ve made the choice not to surround myself with such people, but with people who are genuine and caring, even if they don’t always know what to say. No doubt the author definitely had some unpleasant experiences, some of which were brought on by jerks; but I suspect at least some of the bad experiences were driven by her own perceptions of what she thought they meant.

Being a cancer patient can be an all-consuming lifestyle, especially when you can’t just go driving somewhere whenever you want. But even if it is more of your life than you want it to be, you’re still human, and it doesn’t remove the basics of etiquette from your list of how to treat people. Is someone being a jerk? Feel free to let them know it. Is someone being awkward in expressing their feelings about you having cancer? Give them a break and take the behind-the-scenes message of “I care, but I don’t know how to act or what to say” to heart. Having cancer doesn’t give you the right to be less than human; or give you the privilege of taking your anger out on some poor unsuspecting sympathizer.

But if you are in it just for the glory, I’m sure there is someone out there who will be glad to let you have a ride on their cancer wagon ;-}


My First Video – Take Two

So I’ve posted it to YouTube here:

Robin Doing Tricks

There’s some problems with resolution – it was recorded on HD, and played fine on QuickTime; but on YouTube it looks grainy. If anyone has any ideas about how to fix it, I’d appreciate it, novice videographer that I am.

If I can get my technique down, there may be more videos in the future. . .


My First Video (or not)

In lieu of anything illuminating or deep today (because believe me, it would take a major drilling effort to find anything deep under the load of fatigue and chemobrain riding me today, and yesterday), I’m including my very first video that I’ve ever taken.

The actor does a great job, the videographer needs some training.


Well that’s revolting – I need to pay an upgrade fee to load videos onto my blog. Forget that!

Instead, here are a couple pictures of the dog, the cat and the quilt:

Ahhh . . . the cool hardwood floor!

Robin is definitely a hot dog, and he prefers to lie on the linoleum or the hardwood floor to stay cool, even during non-warm weather.

Jeremy snuggling with my new quilt

This is the quilt that Evelyn made for me – I still haven’t gotten any of the original pictures off Brian’s camera that show the whole thing, so that post is still coming up.

That’s it for today, kids!


Three Scans for the Price of . . . Three

But first, results from last week’s scan!

Good news all around – the largest tumor has shrunk from 9.4cm down to 7.9cm; several of the other tumors also have shrunk; and some that haven’t shrunk outside are becoming necrotic inside, which probably means that the Avastin is preventing the blood flow leading to them.

So, yay!

As well, at 2 months, what they’re really looking for is to make sure that the tumors aren’t still growing, but often what you see at that point is that they’re stable, neither growth or reduction. The shrinkage, therefore is actually very good news.

So, double-yay!

My spleen is slightly enlarged, which isn’t of concern yet – Doctor Medici says there are blood vessels leading from the liver to the spleen (I think this is how it went, chemo brain is to blame if I’m saying wrong, not Doctor M), and they can get a little congested. At any rate, it is possible that it is lowering my red blood count, and may in the future have an impact on whether I can continue with this chemo regimen; but for now we want to go with it for as long as my body will tolerate it, since it’s having such good effect.

I also have some pleural effusion in my left chest cavity – a build-up of fluid in the space between the lungs and the chest wall. I believe this accounts for the chest symptoms I’ve been having, and also for the anxiety attacks, which I’ve been having a bit more often. Dr. M. doesn’t believe that, but I do – I know my body, and I’ve associated the anxiety with the feelings of pressure or compression in my chest, and the feeling that I can’t breathe as deeply as I want; and that was before I knew there was something in there.

However, the thing that most concerned Doctor Medici was the swelling on my left hand from last week. He was concerned that there might be hidden heart damage or a blood clot in my arm that was causing edema, and so he wanted me to have a vascular ultrasound and an echocardiogram in the next couple days.

I went in to the infusion suite and had my chemo, and when I came out, Nurse K. had scheduled me for the ultrasound at 3 pm and the echoCG at 4 pm. Fortunately, our savior driver cousin Jeanette was able to stick around and take me back to the hospital, and even had some personal business there herself, so that all worked out.

The ultrasound was given by a student, and one of the staff doctor/technicians was there to walk her through it. I was hearing comments like “Where is this thingy?”, “Show me that thingy,” “Show me that thingy in color.” I was seriously wiped out from the chemo, and all I wanted to do as I’m lying there was sleep – surprisingly, I ended up feeling pretty rested after that, so maybe my steroid high was kicking in.

They ended up taking a close look at the port and its environs, and the doctor/technician asked me a lot of questions about it. They ran over into my other appointment by about 10 minutes, and were looking intently at the results of the scan when I came out of the room. I had to wait a few minutes for the next test, even though I was late; and while I’m in having the echocardiogram, the ultrasound doctor stuck his head in the door and said:

“I just got off the phone with Doctor Medici, and he wants her to have a CT scan this evening – we’re getting it scheduled now.”

I called Jeanette to let her know that she shouldn’t wait any more, but didn’t get hold of her, which I figured meant she was out in the waiting room. We finished the eCG, and while I was changing the eCG doctor went out to talk to the other doctor. When he returned he said that the CT scan was scheduled, and I should just head right over there. When I got to the lobby, sure enough there was poor Jeanette, waiting patiently – I really appreciate the fact that she took so much time out of her life to drive me around, and to wait so long, but I didn’t know how much longer it was going to be, and figured she needed to get home to her family. After she left I called Brian to fill him in, and have him pick me up after the CT scan.

Once I was over in the radiology department, I got in pretty quickly. Nurse S. asked me why I was there, and I had to confess that I didn’t really know. All I could do was speculate that the ultrasound had detected a possible problem in my left chest/arm area, but nobody had told me what was specifically being looked for (and yes, I did ask the eCG doctor, who was the only one there by the time I was done with that test, but he didn’t know anything about it, just that the scan had been scheduled and where I was supposed to go). So he (Nurse S.) went to talk to the CT doctor, and it turned out that they were scanning the left chest and arm to look for venous clots, as I had guessed. I was still confused with why they needed a new scan, since I’d just had one on Thursday last week, and it was after the swelling symptoms had been and gone; until Nurse S. reminded me that normal chest CT scans are done with both arms above the head, so the arm is not imaged. Ah, of course.

Brian was waiting for me as soon as I was done, and we came home and made dinner, and were hanging a couple new pieces of artwork on the wall when the phone rang.

Dr. Medici was calling to let me know that the ultrasound doctor had detected some apparent slowing of bloodflow into the arms, which seemed as if it was coming from the middle of the chest; this is why Dr. M. requested the CT. The CT however, didn’t detect any clots or other problems, so unless the eCG results come back with something odd, everything seems as it should.

So that is the story of my big medical day, and My Three Scans.


Rash Actions

A day or so after my last chemo treatment (May 4 or 5), I developed a rash on the back of both hands. This happened once before, I thought with the adriamyacin treatment, but since abraxane is essentially the same as the taxol, it probably was with the taxol.

Exactly the same as the previous time, it starts at the base of the thumb, and runs towards the wrist for up to an inch-and-a-half; follows the web of the thumb to the base of the ring finger, where it covers the knuckle; and spreads a little bit up the ring finger, a little towards the knuckle of the middle finger, and maybe even up the middle finger a little bit. It starts out bright red, with extremely shallow bumps that taper out as they get further away from the web towards the center of the back of the hand. It is not itchy, and only mildly painful topically; but it is extremely sensitive to water temperature, more than lukewarm being very painful.

This week it was clearing up after using Aveeno hand lotion regularly, and periodically soaking it in a paste made of Aveeno oatmeal bath soak.

Tuesday and Wednesday were beautiful days, sunny and warm, so I went out into the back yard and lay in my lounge chair in the spotty shade provided by the elm. It was a little cool in the shade, but you’re not supposed to have sustained sun exposure while on abraxane, so I snuggled under the quilt that Evelyn made for me (really, I’m going to post pictures, just having some minor logistic difficulties). I’m pretty sure that my hands were mostly under the quilt both days.

I noticed on Tuesday evening that my hands were swelling a little bit – I didn’t think too much of it, as minor fluid retention is one of the expected side-effects.

Wednesday morning, not only was my left hand quite swollen, but my ring finger was extremely swollen. Before going to my support group meeting, I showed Brian what was going on, and we decided the ring had to come off. We tried soap, lotion, oil, and icing to reduce the swelling, but that puppy was going nowhere. While I was at the meeting, he called our PCP to ask if they knew of any special techniques. When I returned home we tried her suggestion, which involves running a piece of string under the ring, then winding it around the finger. By pulling on the string as you try to pull the ring off, it should get the ring past the swollen spot. In my case, the finger was just too swollen, and although we could see some progress, it was incredibly painful.

At that point, I was getting seriously concerned about triggering lymphedema in the arm (swelling due to the lymph fluid not being able to get out of the arm – typically, when only the sentinel nodes for the breast have been removed (such as mine were), it’s not a high-risk concern, but the additional surgeries and the radiation increased my risk somewhat). I also started having a minor panic reaction at the feeling of claustrophobia of having something so tight on my finger.

So I made the painful decision that the ring needed to be cut off. We called a local jeweler who told us over the phone “Sure, we can do that”, but when we got there, fobbed us off with the excuse that their cutter was out for repair (actually, one person said it *needed* to be sent out for repair, another said it was, and we think they were both full of it). When I asked if they could help us find a jeweler who could cut it off they didn’t even bother to say “sorry” before they said “NO”. So we drove over to the mall and at the first store we found, they were very nice and concerned, and cut it off in less than a minute.

I asked to have it soldered together on a temporary basis, so that I can wear it on a chain – since the rash is a known side-effect of the abraxane, I don’t want to take any chances on having it re-sized and then discover that I have to have it cut off again.

The swelling is mostly gone now, although it took a couple days to show much result.

We pick up the ring tonight, and I’ll be very glad to have it back – until now, the only time I haven’t worn it since we were married was when I was having surgeries, and then it’s been on a chain around Brian’s neck.


My Least Favorite Rollercoaster

Well, one of the topics we discussed with Dr. Medici on Monday was progress scans on the chemo regimen. He said that it had been nearly 8 weeks, and since we were rescheduling the chemo, why not do them this week?

I was floored, as I understood that scans happened every 3 months – Brian was under that impression also, but he said he remembered hearing 2 months originally, but then everything he heard after that was 3 months.

Apparently we were so shell-shocked in the first meeting with Dr. Medici, just finding out that the tumors were indeed cancer, that what we missed/got confused about is that with a new chemo regimen scans are performed at 2 months, and then each succeeding 3 months as long as you’re on that regimen. And once you switch to a different chemo regimen, you have a scan at 2 months, then each succeeding 3 months. The tricky part is if the 2-month scan shows that the disease is progressing, you get switched to a new regimen, so you’ll have a scan in another 2 months.

At any rate, I jumped at the chance to have scans 4 weeks earlier than I was expecting, because the waiting is the hardest part (how petty of me ;-} ). So I had a scan on Thursday morning early.

Late Tuesday afternoon, his nurse called with the results of my CA 15-3 tumor marker blood test results: the number was down by nearly half – excellent news, yes?

Maybe. There isn’t a specific correlation between the amount of tumor marker in the blood and the size of tumors that is true for every person. For instance, when I had my recurrence, I had a tumor that was a little larger than the largest of the original tumors, and my CA 15-3 was somewhere around 9 or so. We did not check my tumor marker with the first set of tumors, since I had the surgery before I ever met with the oncologist, so I can’t say what it was at that time. But 9 is a perfectly acceptable “normal” level, one that an oncologist would expect means there is no tumor.

My prior tumor marker level at my latest oncology followup was 10 (I believe that was in July, but it might have been November, I’ve lost track of specific dates). And when we measured it at the time of diagnosis in March this year, it had soared to 1622. Knowing that there’s at least 1 tumor of nearly 4 inches diameter, other, smaller tumors, and multiple lesions on the liver, that seems to indicate aggressive growth in a short timespan.

But does the halving of the tumor marker mean that the tumors themselves will be halved in size? Probably not, although it is likely a good indication that the chemo is having some effect on the cancer. Dr. Medici says once we get a few scans and tumor-marker measurements, we should be able to figure out *my* personal marker-level-to-tumor-size correlation. It would be awesome if it was 1:1.

So why the rollercoaster?

I’m still adjusting to the idea that I have a terminal disease, which is pretty depressing.

Yet the hope that springs up when I’m told that the tumor marker is down is hard to repress. If we knew what that *meant*, it might be that I have every reason to hope that there has been significant progress; it also might be that it only means that the chemo is good at killing off the tumor markers in my blood, but not good at killing off tissue-bound tumors.

But of course, statistics don’t lie. It’s just that you never know where your position in the stat table is, until something actually happens.

So I’m trying to maintain a balance between hope and statistics – it’s a thin line, and it’s hard to keep your footing.

We’ll find out Monday what the results of the scan are, and there’s 2 out of 3 chances that I’ll remain on my current regimen – if there is progress in shrinking the tumors, or if there is no change in the size, I’ll continue as is; but if there is growth, we’ll be switching me to a new regimen.

Dr. Medici will hopefully have the results soon enough this afternoon to be able to make that decision, because if I’m continuing the same regimen, I will have chemo on Monday. If it’s changing, I’ll have chemo Monday only if he is able to get the new drug in on time.

Hate it or hate it, you gotta love chemo when your life depends on it. . .


Chemo #6 – The Non-Event

Due to unforeseen technical difficulties*, the show that normally appears at this time** is pre-empted by this unscheduled story. Your regularly scheduled show will appear next week***:

We routinely try to challenge Robin with new ways of making his brain think, and one of those ways is by hiding a treat or his cube, and then having him search for it. Another way we have challenged him is to put a Teeny Greenie (dental chew treat about 1-1/2″ long x 1/4″ wide) into a square kleenex box. He figured that out too easily, so we’ve tried stuffing toys and other things in on top of the treat so that he has to figure out how to get to the treat. He’s variously managed to pull stuff out, shake the box violently so that the toys fall out, and tearing the box apart completely.

So last night, I put one of his Super Greenies (5″ x 1-1/2″) into a kleenex box without anything else and hid the box. Not very well, as it turns out. However, the increased size of the Greenie made it difficult to get the treat out of the box, and his attempts to tip it out weren’t working. Usually with the smaller treat, he can shove his long nose in and pull the treat right out. With this bigger treat, it caused his jaws to be open too wide to be able to get the treat back out – kind of like the story of the monkey with the pitcher of nuts. If the monkey grabs just a few nuts, he can still pull his hand out through the narrow neck of the pitcher; but if the monkey grabs a fistful of nuts, he can’t get his fist out through the narrow neck. In theory sometimes monkeys are too greedy to go for the assured treat of a few nuts, so they’ll sit there with their fist clenched around a handful of nuts for hours, unable to get their hand out, but not able to eat any nuts, either.

Robin *wanted* that treat, and apparently badly enough that he didn’t want to take the time involved in tipping it out of the box or tearing the box apart. Unlike the monkey, however, Robin had a third option: since it was his mouth stuck in the box, he could eat the treat without taking it out. So he spent a good 10 minutes walking around with the kleenex box on his nose, trying to chew the treat. After Brian and I were done laughing hysterically about it, I took the treat out of the box so he could actually eat it instead of just trying and not getting much. I really wish I had a picture of it!


*Neutrophils, part of the bacterial-fighting white blood cell system, were too low to progress with the chemo, since the chemo would cause them to drop even further.

**Chemo #6

***I’m scheduled for chemo on Monday morning, 5/17/10.


How do you live with this?

Many people have asked us this question, or something similar.

There’s not an easy answer, although we’re finding out more about how every day.

To start with, we’re scared, we’ve cried, we’ve spent long hours late at night in bed discussing serious aspects of the situation. Most of you don’t know about this because it was just the 2 of us (well, the five of us if you count the dog and the 2 cats); I’ve mentioned it briefly in the blog, or at least obliquely, but haven’t gone into great details about the hair-ripping and teeth-gnashing (this time I didn’t have to shave my head. . .).

Do you see what I did there? I answered the question as best as I know how – we live with this by making it funny. Brian and I have always spent a lot of our time making each other laugh, and I think we just don’t know how to deal with *anything* without laughing.

On Saturday afternoon, Brian took me over to the ER for the usual chest pains, this time with a side of compression and mild panic attacks at feeling as if I couldn’t breathe. As we sat there in the room between doctor and nurse visits, one of the nurses came by and closed the door – at that point, I realized that we’d been laughing and joking, and probably disturbing the sick people in the rooms around us. Who but us, I asked Brian, would go to the emergency room and act like we’re out on a picnic?

(Side note: there was nothing detected in my left lung, and the doctor said “If lying down flat feels bad, don’t do it.” And yes, he did say exactly those words, but not in a mean way – basically there’s nothing they can do for something that has generic symptoms and no obvious cause, and for the most part, the symptoms were gone by Sunday evening. So we don’t know what the problem was, but unless they get more specific or much worse, it’s yet another waiting game. Sorry, didn’t want anyone to be worrying.)

At this point, I suppose I could write a scholarly article on the value of laughter as the best medicine, but all I really know is that when Brian and I laugh together, even about something as scary and serious as liver mets, it pushes back the darkness a little, and makes my heart feel lighter.

And of course, we live with this by depending on our awesome friends and family, and the doctors and nurses, and the kindness and generosity of the people we work with who call, visit, send cards and e-mails, and who laugh with us about the absurd and silly stuff as well as the scary stuff.

Just today, my girlfriend Sharon, who was scheduled to pick me up after chemo, showed how much she loves me by making sure I was taken care of when she was more in need of some tlc than I was. Due to a change in plans, my chemo got rescheduled to next week, so I ended up calling her 2-1/2 hours early to come pick me up. She wasn’t ready, but said she would be there as soon as she could. Knowing that even if she took ten minutes to get ready to go I would see her in 20 – 25 minutes, I said no rush. An hour later I wasn’t sure if I was more concerned or grumpy, but was definitely a little of both. Just then she pulled up. As I got in the car, she apologized profusely, because right after I’d called, her 87-year-old father’s assisted living facility had called to tell her that he was being sent to the ER. She just dropped by to tell me that her husband was on his way from his job to give me a ride home while she went to the ER to be with her father. I, of course, was mortified at having felt grumpy, and told her that Brian could have canceled his appointment, or I could have taken a taxi, or something; but she wasn’t having any of that. She needed to make sure I was taken care of, and her husband was a real champ to come get me. I owe them big-time.

And finally, one of the bad ways that I live with this is to cocoon. I tend to keep to myself, don’t reach out to others, and end up spending a lot of time alone. Now, I’ve always been this way, so it’s not something that changes easily; and in some ways, the quiet solitude is good for me; but I also can get too deep into my head and start feeling depressed. So thank you for keeping tabs on me, for calling/writing, etc. I’m working on trying to be better about reaching out; but you may have seen how I dealt with it at work – I wasn’t feeling well, and was worried about what the mass on my liver meant (I had a pretty good idea, but there’s always hope). I worked from home a lot around doctor appointments, when I was in I kept my door closed so I didn’t have to run into a situation where I had to tell someone about an undiagnosed problem, and when it was confirmed and I had started treatment, I basically dropped out of sight without a word to anyone but Shi-Yi and HR. That was pretty anti-social of me, but I just wasn’t up to dealing with the emotion of telling people about my third round of cancer, and this one much more grim than the previous two.

So we deal with it in some exceptionally great ways, but also we tend to isolate ourselves, which isn’t good. Probably much like so many others both before me and dealing with it now – is it just that we don’t know anyone who is dealing with something so bad, or that they deal with it so well, that we just can’t see how well they’re dealing with it? Maybe some of each. . .

p.s. It’s not too late to donate to the Making Strides Against Breast Cancer fundraiser. Just use the link on one of my previous posts to get there. The walk is over, but the need goes on.

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May 2010

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