Bob's Coming Out Party!

Hey! We'd like to invite everyone to Bob's Coming Out Party! What's coming out? His hair. The mouth sores are healing, and now his hair is falling out. Over the past few days, each time he comes out of the shower, he's holding what looks like two small rodents in each hand. When I shower, I see strands of beautiful, silky, Superman blue-black hair, sticking to the walls of the shower, the bathroom floor, the inside of the sink. It sticks to my hands when I run them through his hair. Right now, if you'd see him, you might not notice, but I can tell it's much thinner. Maybe it'll taper off over the next few days, maybe not. I brought my shears home the other night, with the idea that by cutting his hair really short, it won't be as traumatic if he loses it all. He doesn't care. Not worried about it, he tells me. It'll grow back. He said he's got his Mad Bomber hat ready (you know—Elmer Fudd-inspired, lined in fur, ear flaps), in case.

We spent half of the day yesterday at the U, for a few follow-up appointments. Bob was able to walk the entire way (with a few stops here and there), which is a huge improvement, a small miracle in his world, really, since the last time he was there. Upon check-in at the Masonic Clinic, we saw the nurse who had worked with him two weeks ago when he went into convulsions and she had to insert an IV of morphine while he was shaking like an epileptic (I can say that, I have epilepsy). She was good. She recognized Bob right away and came around the counter to say "Hi." Said he looked so much better than the last time she saw him, and wished him well with the next round. The U's oncology staff have been nothing short of incredible throughout all of this. The nurses so good at what they do, and compassionate to boot. The doctors take their role very seriously; if there is even a slight change in a patient's condition, they are adamant about giving them a call to check in. Pretty incredible experience, thus far.

The Masonic Clinic is a chaotic place. People of all ages, most accompanied by a friend or family member (some with what looks like their entire family—mom, dad, siblings, aunts, uncles, second cousins thrice removed—in tow). The little kids break my heart. More often than not, as soon as their name is called, and mom or dad picks them up to head back to whatever it is they're there for, they start crying, screaming . . . they know the routine. All the patients break my heart, really, but those little babes . . . no one can tell me "everything happens for a reason" with a straight face on that one . . .

Bob first had an appointment with Dr. S, the oncologist heading his chemo plan. It was combo-appointment: a follow-up to the chemo he just had as well as a primer for things to come. Since he wasn't the admitting doctor when Bob went into the hospital two weeks ago, Dr. S got the low-down on on how Bob has been doing since then, got details on the hospital stay, seemed concerned that Bob has had so many side effects from the first round of chemo. Depending on how things go, they may have to tweak those drugs next time, Doc S. said.

(A little aside here: I'm sitting in the recliner in the dimly lit living room writing, Bob is lying on the couch, watching the morning news thats softly on in the background. Bob just punctuated the serene setting with, "Thank god it's Friday. I love Fridays . . ." ummmm . . . maybe that's not funny to y'all, but I almost dropped the laptop over here . . . 'cause, see, his days all just kinda blend together and usually he doesn't even know what day it is, and then here I'm getting all sappy and emotional on my laptop, and sometimes his comic timing is right on . . .)

For the upcoming round, Bob will be hospitalized, then given a "lethal dose" (Doc's exact words) of a drug called methotrexate. The drug is only given once, through IV, but then his body will be flushed with all kinds of fluids and an antidote, to wash the drug out of his system once the job is done. According to Dr. S, even though they will nearly kill him with this drug, it is usually tolerated quite well, very few side effects. I shit you not. Doc S. said pack for the stay as if he's going on vacation because it'll be a whole lotta sitting around. He'll be able to move about, do whatever he wants. He's not sure about having visitors, so we'll let you know at the time, if he's up for it. The length of time he's hospitalized will depend on how quickly the drug is flushed from Bob's body. Five days is about average. He'll be sent home for a few days, and then this will be repeated. Then, home again for a few days, followed by another round of Doxil and Cisplatin (the first two drugs he had, which made him so sick). This will bring us to the end of February.

At that point, he'll probably have another scan, to see how the tumor is responding to the chemo. He may have another round in the hospital with methotrexate; we have to wait and see. Kinda sounds like the theme here . . .

After the appointment with Dr. S., we headed over to the Phillips-Wangensteen building, which is a little jaunt through the U's Habitrail tunnel system, to Dr. K, in Palliative Care. Bob held up pretty well, considering this is the farthest he's walked since all of this began. Oh, wait, I forgot about the Trail of Tears back at United . . . the farthest he's walked without excruciating, debilitating pain, that is. I had to look up what Palliative Care is, as I'd never heard of it before all this began—sounded scary, but actually, has turned out to be one of Bob's best allies. This Dream Team of pain management specialists helped come up with the methadone/Dilauded drug combo, which is working wonders with Bob's pain. Their job is to simply manage his pain, and assess Bob's quality of life as he goes through all this, help accommodate in any way they can. We find our way to the clinic, and are seen by Dr. K in short order. She's a cool woman; very compassionate, very knowledgeable, so concerned that Bob's pain is being managed as best it can. Based on what Bob has told her about how his leg is doing, she changed the dosage of his methadone, increasing it slightly, so that he doesn't have to rely so much on the Dilauded for breakthrough pain.

By this time, it's nearly noon and Bob is beat. I run back to the hospital, retrieve the car and pick him up in front of the Phillip Wangensteen building. On the way home, I stop at the Ho Ho Gourmet for some Chinese takeout. We drive by it daily, coming into St. Paul on 94, but have never been there. Bob was craving some fried rice and some hot, spicy Szechuan chicken. The women working at the counter were so dang nice, and I had such high hopes for the grub, but alas, was sorely disappointing. . .bland, kind of tasteless, fried rice had such a fishy taste . . . here Gaia, here Rocco . . .

So, a few more days of waiting, some time to get at least a few more pounds on Bob before he checks into Club Chemo for the next phase of treatment. He might add a blog or two before then, depends on how he's feeling. . . stay tuned! Have a great weekend, all! Drive safely (it's ugly out there this morning)! LOVE!

Jen