Time Marches On / Anxiety Takes It’s Toll

Sorry about the delay in posting an update. Most of my “brain tumor” time has been focused on fundraising and our scientific grant process over the last couple of months and the blog keeps getting pushed to the bottom of the list. Many of you have asked how Samantha is doing, and as you might expect, it’s a bit of a loaded question because there are so many different dimensions on which this question could be answered.

First, the facts. Her last MRI was on March 14^th. Whereas her prior MRI showed no further growth (compared to December) and substantially less (but still some) enhancement from the contrast material, this scan was deemed to be “stable.” Tricky word that “stable.” An optimist would interpret that to mean the tumor was not active. A realist would conclude, on closer inspection that it only signifies stability relative to the immediately prior scan. What the radiologists and oncologists can’t tell us is whether the continued enhancement means the tumor is active but not growing in it’s outer bounds, or just likes having it’s picture taken.

This is where the art of oncology takes over from science – they look at the patient, who appears to be tolerating the medicine reasonably well (more on that later), they consult the neurologists who determine (by observing the patient keenly for 10 minute intervals every 3 months) that the patient is not demonstrating any meaningful reduction in functionality, and they conclude that it’s better to continue with treatment and buy some more time (more time pumping toxic crap into my kid) than stop treatment and hope the next, more experimental drug regime, can do a better job… after all, eventually they run out of new things to try, but let’s not go there.

The week after the MRI was the tough part of Samantha’s chemo cycle. Last time around we shifted the timing so the hardest day fell on a weekday, so she could get her anti-nausea meds via IV at the Dana Farber. That worked reasonably well (or at least better than our knock down drag out fights trying to get her to take them orally at home), so we went with it again, hoping for the best. Alas, our clever young heroine, remembering the prior cycles when she had taken the meds without the proper anti-nausea dose (which she puked up), decided the chemo would make her intolerably sick, thus causing her brain to tell her body to vomit the med up literally as soon as it entered her body.

Fortunately for us, unlike at home where we only had a very limited supply of medicine (usually just one extra dose per cycle), the Dana Farber has an endless supply, so we kept trying. Cindy called me over from work when she needed some reinforcement, the nurses helped out a ton, and after 6 hours, 8 or 9 tries, lots of coaching from her nurses and psychologist pal, and a fair bit of whining and crying (she actually felt terrible because she really was trying), she finally managed to keep it down.

Long story short, her reaction to the medicine in this instance was completely psychosomatic. It was never in her body long enough to actually physically make her sick, it was just a case of mind over matter, with an adverse outcome. Part of the problem is that the “hard day” follows several days of having to wake her up in the middle of the night to take her drugs, so by the time we get to it, we’re all exhausted and Samantha in particular (who has the lack of sleep plus the drugs effect on her body to contend with) can usually barely hold her head up. Who designs these protocols anyway?

Our next chemo related challenge arose about 2 weeks ago. One of the 4 drugs in her regime causes her platelet count to get dangerously low, but on a time delay – generally 3-4 weeks into the 6 week cycle. The docs know to watch out for this and we’d had a couple of close calls over the winter. Basically when your platelets are low, your body bruises easily and doesn’t heal properly, which is no big deal unless you suffer head trauma. During her early February, she couldn’t ski or sled for 2 weeks, which was a bummer at the peak of ski season, and she was dangerously close to needing a transfusion, which we’re quite eager to avoid. Fortunately, in that cycle, her counts bounced back strongly after a brushing the transfusion threshold.

In any event, 2 weeks ago, she was in the low platelet count zone and we were feeling good because her counts were actually higher than they had been last time around. One recent evening after dinner, Samantha was monkeying around in the kitchen on some high heel dress up shoes (not very high, about 2 ½ ”) that the kids often pad around in. The shoes have flat soles, the kitchen floor is slippery hard wood, and boom, she fell and smacked her head (her eye actually) against a step stool in the kitchen. We probably should have taken a picture of it for our album, maybe one day we’ll be able to laugh about it, but for the time being it was actually quite painful to look at her. Remarkably to me anyway, she took it in stride -- I guess the kids in school didn’t make a bit deal about it -- and is starting to heal up now, but for the better part of the last 2 weeks my daughter has had to face the world with a shiner that would make Rocky Balboa proud.

To make matters worse, Cindy recently took Sammi for her annual physical and came back visibly shaken at the contrast between last years check-up and this year. It’s funny, when you’re with someone every day and are trying to accentuate the positive, you tend not to focus on the little negatives. I saw Sammi in a t-shirt and noticed that her right had noticeably less muscle tone than her left – is this “normal” given the way she favors her left due to her right sided weakness, or was it a sign that the tumor is doing further damage?

In any event, Samantha has lost a lot of weight due to the chemo and, without clothes on looks quite emaciated. She’s frequently exhausted, and spends a lot of the time with her thumb in her mouth. She’s also become incredibly sensitive to the touch, refusing to be picked up under the arms and often crying out in pain from seemingly innocent physical contact. Combine those factors with a big black eye and our usually vivacious little girl made for a pretty pathetic sight to see.

The physical exam also revealed some new concerns – weakening eyesight and a dramatically reduced ability to balance on one foot. The first is unlikely to be tumor or chemo related, probably just the result of being the child of 2 parents with glasses. Even still, if one of our kids needs to have glasses at a young age, why does it have to be her? The balance issue is probably related to the chemo (as opposed to the tumor) and is most likely temporary – it’ll get worse through the end of her cycle then she’ll rebound after the drugs are totally out of her system. Ick.

So, here we are, 7 ½ months into an 11 month chemo cycle – the end is in sight, but we’re deeply uncertain what the future will bring. Fortunately, after having had a hard time adjusting to our new family reality in the fall, both Mikki and Ali are in a good place right now. Cindy and I invested tremendously in trying to help them keep their balance, but at a high toll to ourselves. I feel guilty about not making more of a contribution at work, neither of us are exercising regularly, our house is a wreck, and we’ve both gained more weight than I’d care to admit.

We know we need to get Samantha through as complete physically and emotionally as possible, but we have to get the rest of us through this as well… the families of many of the “survivors” we’ve met along the way have suffered permanent adverse consequences… lost jobs, broken marriages, messed up siblings, etc. We’re doing our best to make sure it won’t happen to us, but there are only so many hours in a day and we both seem to feel perpetually exhausted. Neither of us is sleeping well.

In any event, the events of the last couple of weeks brought on a tremendous and sustained sadness in our house. Whether due to a gradual building of anxiety and fear from the past 7 ½ months, a reflection of the cumulative stress building up, or of exhaustion from sleeping too little, the emotional dam broke recently. We had a few terrible, horrible, no good, very bad days in our house. Luckily, my parents are about to return to Boston for the summer, which will provide some relief and we're hoping to be able to send Cindy off to the spa to decompress for some much needed and well deserved personal time.

Unfortunately, at yesterday’s appointment, we learned that Sammi's platelet counts haven’t bounced back enough to start the next chemo cycle. If her counts bounce back by Friday, we’ll do the oral chemo over the weekend and she’ll go to the Farber for her hardest day on Monday, no harm no foul. If they don’t bounce back, they’ll have to extend her further, delaying the timing of her getting her medicine, and possibly either causing Cindy to have to cancel her desperately needed vacation or me to have to skip an important out of town business trip. Worse, if her counts stay low for too long, they will dose reduce… so we’re going through all this crap to get the right amount of medicine into her but because of the toxicity and side effects of the meds on her body, we have to give her less – what if we’re just causing side effects and not getting the required amount of medicine in her to help her best fight the tumor? It’s maddening…

In the meantime, we owe Sammi a dog, and neither of us are quite sure how we’re going to handle needs of one more living thing in our house, especially a new puppy. On the other hand, the kids expectations are high on this point, we don’t know how to break it to Samantha that she’s may have to wait beyond this spring to get the dog she’s worked so hard to earn.