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| Wednesday, November 11th, 2009 | |
| 7:28 pm | Adventures in Oncology Things are going ok. Isaac might even be doing better than I am at the moment. I wish I could say I was the calmest, sanest, got-my-act-together-under-stress person you could find. Sadly, that is not the truth. Now, ’tis true that in acute moments of crisis, I can be steely and reasonably focused (other interpretation: numb and on automatic pilot). I wait until the worst is over before I start crying. Protracted crisis response, however, is not my forte. I might normally say, that’s what Xanax is for, but as long as I am the household’s chief chauffeur, Xanax is not an option. You do not want me behind the wheel while on Xanax. Anyway, we’re muddling through. Isaac has radiation therapy five days a week, Monday through Friday. My understanding was that it will go on for maybe two months. A nurse I spoke to yesterday (who was handling paperwork, not working on his case) said they don’t do it for that long. I hope she’s right. Then again, he doesn’t have a run-of-the-mill cancer. Damn my taste for exotic men. He had one round of chemotherapy while in the hospital. That goes on a 29 day cycle (or a 32 day cycle–I’m not always sure what the oncologist is counting as Day 1). The next round will begin the day after Thanksgiving. Great–Black Friday. How the heck am I going to tell the bosses I need to go with him? Chemo is a bit of a production. A lot of people go in for a few hours, get hooked up to an IV, then go home. What they’ve got my boy on is a drip that is continuous for four days straight. However, they are going to do this as an outpatient. He’ll have some sort of regulating dispenser on a belt pack that he’ll wear round-the-clock at home. However (lots of “howevers” in Oncology Land) in order to do the chemo, he has to go into the hospital (next week, I think) to have what’s called a PICC (Peripherally Inserted Central Catheter) line inserted. It’s a tube they put in his upper arm that runs all the way to the heart. He had one in the hospital, but they removed it before he came home. This one, they said, will be smaller than the one he had before. It might be left in indefinitely. We learned a lot about this yesterday (Tuesday) at the oncologists’ office. Now, that’s a place I would not like to work. Don’t get me wrong, the staff is wonderful. They have been without exception pleasant, kind and caring. Yesterday, I came in with a bunch of paperwork that I needed for my family medical leave right at the deadline to submit it. The nurse who filled it out was pretty stressed by the rush, but she took care of it for me while I stood there. I kept apologizing for waiting until the last minute. She kept telling me, “I know you’re under a lot of stress,” while I stood there putting her under stress. I was so grateful I wanted to cry. What gets to me is that the place is so crowded with patients. So many people with cancer! All those lives disrupted, not just the patients but their families, too. I just feel drained when I there. Poor magical skills on my part; you’d think by now I’d be better at shielding. I’m not, I admit it. I get overwhelmed by the energies of people around me. Isaac, bless him, says I shouldn’t go if it is too much. Not a chance. It’s really important to me to be there. You’re given so much information at these medical meetings, not all of it sticks. If I have to then get it second-hand from Isaac, more data gets lost. I went through that when he was hospitalized and I was too sick to visit him. He was sick as a dog with all the infections, and trying to retain all they were telling him; I was sick as a dog on the other end of the phone trying to understand what he was telling me, while he wasn’t always remembering what he told me and what he didn’t. You need two sets of ears, at least, just to process all this stuff. So, the oncologist says it may only take two-three months before he’s considered to be in remission. The obvious cancer is responding well to the treatments. The wild card is what else may be going on in his pelvis. The oncologist wanted him to get a PET scan, but the PET scan people said at this stage, there’d be false positives so don’t do it, but we couldn’t get hold of our oncologist because it was a weekend so another doctor at the practice said cancel the test, but our main doctor said yesterday it would have been ok, but now for sure it’s too late, so she doesn’t know what else may be happening … see what I mean? Medicine is art as much as science. Day to day, nothing terribly exciting goes on. We go to medical appointments once or twice a day. Maybe we’ll go walk a little if the weather is nice, then he comes home and naps. He has trouble eating because of mouth sores. Also, he’s on an extremely restricted diet. Everything has to be low fiber and low residue. That means all the things we’ve been conscientiously eating for years–fresh fruits and vegetables, brown rice, whole grains–is mostly off limits. No skins, no seeds, white bread, white rice, bland, bland, bland. Yep, he’s losing weight. The struggle is making food he can eat that has some nourishment for both of us. One strategy for keeping weight on cancer patient is to feed them milkshakes and all the other high-sugar treats you normally wouldn’t indulge in every day. However (lots of “howevers,” remember?) he doesn’t tolerate cows’ milk all that well, which puts limits on ice cream. Still, we’re going to get a blender today so I can make him smoothies with bananas and and soy ice cream. Maybe tofu, too. If I can get out of this funk enough to bake, I’m thinking banana bread and zucchini bread. I’ll have to peel and seed the zucchini, but that’s no big deal. Of course, I normally bake with whole grain flours. Not now. Now it’s gonna be white, white, white. Did I mention I don’t digest wheat very well? Another “however.” And I’ll have to put the brakes on myself so I don’t get fat while he’s getting skinny. Isaac, being by nature more upbeat than I am, did take one dramatic, proactive step. He was already noticing his hair and beard coming out, so he went to the barber and had it all shaved off. I thought he was just going to get it cut very short, but nope, out came the razor. He’s so cute when he’s impulsive.
I have to get myself together enough to go back to work soon, or we’re going straight to the poorhouse. Donations welcome. And thanks for all your good thoughts and concern. More later as I think of it. |
| Monday, November 2nd, 2009 | |
| 4:17 am | Another Isaac Update I’m happy to say the general trend of Isaac’s cancer diagnosis is good. At the end of last week, one of the oncologists (it’s a group practice) did a little sketch for us of the lesions. (They use “tumor” and “lesion” interchangeably; I suspect “lesion” is more fashionable with the oncology medicos and “tumor” is the mark of a cancer-land outsider.) The tumors are stranger than we thought. It’s really more like one big lesion with two major lumps, the very prominent lumps being what we’ve been calling tumor one and tumor two. She said the whole thing is maybe 10-12 centimeters long. That’s a long bit of nasty. There’s a third tumor outside the colon/rectum/anus, in his pelvis, plus some puffy lymph nodes that might just be getting huffy because of all the negative activity elsewhere. The lymph nodes may take care of themselves as everything else begins to chill out. So now starts the chemotherapy and the radiation. We had a bit of excitement with the chemo. There is a shortage, nationally, of one of the drugs he needs. They had to delay the start of his treatment while they located a supply. It’s capitalism in action; not many people use this drug, so not much of it is made. He’ll get the chemo once a month, but the treatment lasts four full days. The chemo is dripped into him around the clock. Although they’re doing the first round now with him in the hospital, for later treatments, they’ll hook him up with some kind of pack that he can wear at home. To that end, he’s got a semi-permanent IV hook-up in his arm that will stay there for the duration. The radiation works a bit differently. He’ll go in to get zapped five days a week, week in and week out. (Not seven days a week, only Monday through Friday. Apparently, says Isaac, tumors take the weekend off.) He’s got all sorts of circles and arrows drawn on his belly and hips so they know they’re getting the nukes pointed at the right spots. Luckily, the pelvic tumor(s) are close enough to the anal/rectal tumors so they get zapped with the same shot. The radiation will go on continuously for as long as the chemo, anywhere from two to six months. The best news of all is that he’s getting released from the hospital very soon, probably as early as Monday evening. The first round of chemo (it’s been running continuously) will end around 5:30 PM. After that, Gods willing and the fever don’t rise, he’s coming home. Which means I gotta get some housework done around here. After a day or so to get him settled in, I’ll go back to work. I’m able to get this time off, for both my flu and his medical crisis, but not with pay. So if you want to help us out, we’d be grateful. Use this link or the “Donate” link in the right-hand column. |
| Friday, June 19th, 2009 | |
| 7:59 pm | Emergency Healing Energy Needed This is Daniel James Hansen, whom I knew and married as Rusty Elliott back in the 70s. He has a very severe infection of his right arm and shoulder muscles going down to the bone. Current location (June 2009) is Hayward California. He is extremely psychic, so feed healing energy gently. This is a life-threatening illness that may have triggered a stroke. Please help, as this is too big for one healer to handle. |
| Thursday, October 29th, 2009 | |
| 2:37 pm | Morning View from outside the Hospital I really regret having had the flu last week when Isaac originally went into the hospital. He’s been so ill, he hasn’t been efficient at getting the info to me over the phone, which has kept me confused about which doctor is which and what’s all going on. Today, I think I’m going to sit down with the nurses and get a complete list of all the doctors (there’s got to be five or so) and their contact information. I did notice yesterday that the hospital has huge signs at all the entrances saying if you have any flu symptoms, please stay away. So, while I knew I did the right thing, I’m very much playing catch-up now. A big problem has been that he has two overlapping conditions. He had—still has—a very bad prostate infection. He had cysts that were infected. He’s been running a fever for, well, maybe weeks now. The good news is that seeking treatment for that issue is what led them to find the cancers. The bad news is, a lot of treatment has been on hold until the infection(s) are under control. Last night for the first time, I was able to talk to the oncologist directly, so I feel now I have a little better idea of what’s happening. One thing I noticed is that she didn’t call them tumors, she called them lesions. I have no idea if that’s a significant medical difference, or just more precise medical jargon. Add that to the “find out” list. I did ask how it all got missed when he had the colonoscopy last year. I’m not sure I completely understood the answer. She said it was hidden. *Sigh.* Ultimately, it doesn’t matter. That was then, this is now, they found them now. As of last night, they were comfortable calling them all squamous cell carcinomas, which is like getting skin cancer on tissue inside the body. The first choice, considering where the lesions are located, is chemo and radiation. That may start as soon as today, if the infections are under control. The infectious disease doc has got to give the ok for that. The surgeon will be out of the picture, unless his bowels become obstructed. If that happens, surgery will happen right away. So, I’m off to find out what’s going on. Keep those cards and letters coming. |
| 1:44 pm | Testing, testing … I’m just trying to convince Facebook to pick up an appropriate graphic when people link to our blog. Nothing else to see here…move along.
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