Gamma Knife Radiosurgery Trip Report
If you’d like to see the pictures, there’s a link to the left and the password is “sedated” for number one and “loopy” for number two.
7 August 2008 – 10 August 2008
Surgery was 6 Aug 2008 and we came home in the evening exhausted, so I’m beginning this the next day. My energy lasted only as long as it took to type the words before this sentence. The “Versed” they gave me for sedation, stayed with me on the long end of the bell curve, and left me loopy and dizzy through the end of the day after surgery While it wore off, I sat at home watching the world go round and did very little; especially nothing complicated like typing coherent sentences.
Three years ago on August 5 2005, we were in Portland, OR, at the crack of dawn, so I could get “bee sting” radioactive isotope injections at OHSU. The isotope injections were given to see if the cancer could be tracked from near the melanoma site in my back to sentinel lymph nodes. The nodes turned out to be in my underarm. The surgeon did a “Wide Excision and Sentinel Node Biopsy” that day. I went home to Katherine’s on the hottest day of the year in Portland, kicked her out of her bed, and was miserable and hot (except for wandering around a bit and taking a cool bath while keeping my shoulder dry. The main things I remember from the trip are bits and pieces like: the automatic ice maker on Katherine’s refrigerator had thawed and frozen so it couldn’t properly make ice. This was completely unacceptable to me on the hottest day of the year, so on the day before surgery, I’d started the process of what to do to fix it. We doused it with hot water a couple times and unstuck ice. We rattled it around — and I think, in the bit of time we were back from the hospital, it was, in fact, making ice again. Either that, or someone humored me. I believe I fixed it, or got John to fix it.
This year on August 5, we packed up early and headed out on another melanoma adventure. First, we drove to Roseburg to collect some melanoma cancer awareness bracelets I’d ordered. They were going to arrive by UPS, but too late to take with me to the hospital. When I ordered them, I didn’t know what the timing of the whole event would be. The bracelets for melanoma are black — probably because it’s also known as “black mole cancer”, but in some ways it’s like wearing a black armband for someone. Not the color I’d choose, otherwise. I also wear a white one for Philomena, John’s sister, who is currently fighting, and surviving, lung cancer. Katherine’s breast cancer bracelet is pink but I haven’t worn that one for quite a while. I reduced bracelet’s a few years ago, due to hand swelling after a shot in the wrong arm (no injections on the side from which they took the lymph nodes in the first surgery). My black cancer bracelet, I’ve worn for three years.
The rest of August 5th 2008, we did fairly regular daily things: Logan and Jazzmin went to a handwork class with the EWS teacher; we all ate good Sushi for lunch at the Sushi Station (thinking we’d go eat more at a different place in the evening, but the second one turned out to be not so good — we’ll go back to Sushi Station in the future — Logan and I eat vegetarian Sushi very happily; Jazzmin and John eat all sorts of other things); Logan had a play date with her friend Sandy in the afternoon; John went to see a chiropractor to get his head put on straight again. Eventually, we picked up some food for the next day and checked in to the hotel. The girls went swimming while I rested and showered; then we regrouped and went out to dinner before connecting with Katherine.
Katherine was supposedly in an adjoining room to us. We even double-checked that arrangement when we checked in to the hotel. We were a bit suspicious of how that would work, however, when they told us, in order to do this, our room would have to be on the second floor. They put us in room 213. That “sounded right,” but room 213 turned out to be on the first floor. There was no connecting door. When Katherine arrived, she was put in room 310, a few doors north and above us. We looked for a trap door in the ceiling, but didn’t find one. Katherine and Jazzmin got better beds, but beyond that no one cared much.
The next morning we kept as much regular routine as we could: coffee for the three coffee drinkers; morning reading for Logan; and a sip of water and some crackers with pills for me.
We walked in to the hospital at 6:02 AM, Aug 6 2008, my dad’s 74th birthday. I did tell him I was having my cancer killed for his birthday. It’s the sort of gift you only hope to give once.
Besides John, I had a team of patient advocates with me. If I’m going to do something, I try my best to do it right these days. My days of working as a Doula, which is a variety of patient advocate, taught me how to prepare for this sort of thing. I had Logan, of course; who had Jazzmin and Joana with her a great deal. Although Jazzmin wasn’t invited to visit just because of this — Jazzmin was coming to visit and got swept up in the flurry of activity that is a fact of life when one is diagnosed with metastatic melanoma two days before a visit — kind of a rude thing to do to a fifteen year old on vacation, she managed well. We’ve kept as much vacation in her trip as possible. There’s an extra teenager sleeping over right now with plans to make chocolate and ice cream when they get up a little later.
Joana’s credentials as a Linguist may not have been put to much use in the hospital, but I can’t say for sure — she was there a good bit of the time that I wasn’t in the room. Her ability to be calm and feed people, was put to use completely. She took the girls out to eat breakfast and to take pictures of toilets. (I don’t know about the toilets, but I saw the pictures.) She brought the food we ate at home that night, and for part of the next day. I’m still eating some of it. I’ve determined Stonyfield Cream On Top Yogurt is the perfect food and is to be eaten regularly. I was also ravenous, once they let me eat, and ate sandwiches every couple hours at home.
I brought Katherine Jensen, my Nurse Practitioner. She caught Logan when Logan was born. She came to the fire and helped us transition from the house to the hotel post fire. She came to my first cancer surgery, which was with her oncologist. She gets to go with me through parts of the process where people without medical credentials aren’t allowed to tread. She also put us up in her home, which was already full of her family. Naturally, she came again she came for this cancer. We’re trying to make plans to get together for a non-crisis event next time around; maybe a Portland market. Katherine, again, got to slip past some rules as a medical professional, and acted as photo-journalist, to boot. She took most of the pictures I’ve got, though I haven’t raided other people’s cameras. Yet.
I brought Carolyn Munroe, who is a sculptor. I’m not sure what is going to come out of having an artist at this whole thing, and I’m a little worried about that part of it. Carolyn came to all the medical appointments responding to every invitation. She even drove to my house and picked me up, then drove out again and spent all day, when I was too loopy to be the responsible adult at home after the Radiosurgery. This meant, she had to get up at god-awful hours of the day and miss her family. I tried to lure her physicist husband in too, to keep John company and do the science geek part, but sleep won out for him. John had to be the loan scientist on our side, though he did enjoy that role.
Once we arrived, they showed us to a birth suite type hospital room — part stretcher sized bed with equipment, part sitting area, and offered me scrubs to change in to. Being the difficult patient that I am, I’d brought my own clothing (plus a quilt and pillow for the bed). Becky, the nurse who had the other patient for the day, met us on the tour a couple days before and was aware we’d be unusual. Michelle, who was the nurse in charge of the whole thing, and of us, hadn’t been adequately warned at that point, I think. Nonetheless, she took it all very well. Logan and I decorated the room and put my things away. This gave Logan work to do while I got ready; then I changed in to shorts and a top I’d brought with me, having decided they would be more comfortable and friendly than hospital scrubs. I also told Michelle I wasn’t ready yet, when she came in and wanted to do things (probably twice), taking my own sweet time getting things to where I wanted them. It wasn’t moving slowly to be annoying, but I wasn’t going to be rushed for anyone, either.
Once I was all changed and Logan had the bed fixed the way she wanted it, we settled me in to bed and Michelle put gobs of cream on my forehead, under little plastic band aids, where the Halo would go in front. I’m not sure if got cream put in the back, or only injections. If there was cream, it wasn’t held on with sticky stuff. Michelle also did my vitals, took my glasses (I could have had them back, but I’m reasonable for most things without them), double-checked me for metal jewelry, etc), and all that other fun hospital stuff. Logan helped put my hospital wristbands on, and observed they were almost the same as the ones we’d had at Faerieworlds the weekend before.
Michelle opted to put the IV near my left ring finger, and also injected numbing medicine before starting the IV. I’m not sure the numbing medicine did anything. The IV stick hurt more than the one I’d had a week before, in a vein slightly more toward center (I’m sure Michelle did everything she could to make it easier to manage). Katherine sat with me while Michelle did the IV, and Logan watched with John to make sure it was done right. Getting shots and IV’s is my least favorite part of any of these things. I don’t mind the rest, except for that. I don’t know that I’d choose to wear a Halo again, but it would probably depend on the other choices. I’d certainly choose to avoid needles if I could.
Once the IV was in, I had just a little time to get settled, and somewhere in that tiny space of time, they gave me “Versed” as a sedative. My records will say how much they gave me, but we talked about it ahead of time and agreed it was easier to start with a small amount and add more if it wasn’t enough, than to start with too much. I am so extremely sensitive to medications. I didn’t want to simply pass out from being “mildly sedated”. Logan, Joana and Jazzmin left to go eat breakfast in that same time window, so Logan would have something better to do than pace the halls, and I wouldn’t worry about her.
The Versed was interesting stuff. I could sit on the bed and focus just fine on Katherine. Except that Katherine, very obliging, swayed all around. I don’t think she was doing it on purpose. The swaying effect went away after they put the Halo on. I think the adrenalin from the Halo used it up. The Versed is supposed to have amnesiac effects, but I am not finding a lot of them. I’ll have to see what folks report that I’ve forgotten. Katherine says it makes her forget the entire procedure. It made me feel miserably incompetent for the second twenty-four hours after getting it, and was definitely still in my system on day three, but notably reducing.
They gave the Versed fifteen minutes or so, to work, and then politely kicked “family” out of the room. I’d asked in advance for Katherine to be able to stay, and was told she might be allowed to remain for injecting the numbing medicine in to my head, but no more, despite being a medical professional. I smiled and nodded, knowing I’d heard that before, then seen it not happen. I decided to “wait and see,” but be prepared for them to actually kick her out. The doctor came in and set up, made sure I knew it was Michelle, the nurse, who was pulling my hair removing the tape, not him, Dr. Stephen McGirr.
All my Dr’s are here (Dr McGirr, the tall guy; Dr Merideth Wendland, the only lady in the picture; and Dr Franz St George at the lower right, the physicist (he’s taller than that, they must have him sitting or something.)): http://www.peacehealth.org/Oregon/SHMC/GammaCenter/Team.htm
This page shows Michelle, my nurse on the right: http://www.peacehealth.org/Oregon/SHMC/GammaCenter/PatientInfo.htm
As Dr McGirr, my neurosurgeon went teased me about who was torturing me with removing the tape, he was dripping cleanup solution in to my eyes, as he wiped numbing gel off my forehead. Katherine moved in to her support person role. She sat down on my bed, held my hand and talked to me, as he got ready to inject the Novocain-type stuff. I suspect it wasn’t actually Novocain (Katherine says it was lidocaine and marcaine), but that was the analogy they used — “like getting your teeth numbed before the dentist”. So I looked at Katherine and breathed in through my nose and out through my mouth and didn’t look at the needle they used to numb me (Katherine says this was very good, as the needle was about 6 inches long, very thin, and the doctor bent it every direction possible to get all the areas numb), which is actually pretty good, since I know what the ones the dentist uses look like, and those are nasty! Getting injected wasn’t fun, but it wasn’t horrid. Knowing I had to be really, really still was one of the worst things, probably. I always think I might forget and suddenly move or jump or sneeze. I just looked at, and listened to Katherine, and did what I was supposed to, and they all said “good dog, good puppy good….” oh, no, wrong set of praise there.
The numbing didn’t take very long at all (at least as I remember it), then Dr McGirr and Michelle moved right in to putting the Halo on. Katherine ended up staying right where she was on the bed, with me looking at her, breathing, and not moving. I did remind her afterwards she wasn’t supposed to stay. She says the doctor said, “As long was you’re here, you can wipe up any drips,” and handed her a gauze pad to do just that. Maybe I was supposed to forget that part. Knowing they were going to put things through my skin, to touch the bones in my head, was really weird. Feeling the pressure wasn’t fun, although the main pain was when the numbing didn’t match up well with where the Halo had to sit.
Because of the shape of my head and the deviation of the septum in my nose, the Halo and my head weren’t symmetrical. Probably they never are, but it was more obvious with the Halo in place, as can be seen in the pictures (which will be somewhere with this trip report). On my face, the holes where the pins were, are notable asymmetrical. On the right, they had to renumb a little in different places, because it stung more when they were putting the pins in.
Dr McGirr went around and got all four pins in place, and then tightened them one by one, until they clicked (Katherine said he used a device that looked like a Phillips screw driver). He couldn’t do one all the way, and then the next, so it was just a bit at a time. It felt very strange, as if there were a bar pressing across my nose. Nothing was touching my nose, but I still felt as if everything was supported there, as if I were wearing very heavy glasses. The screws tightened with a torque wrench, I think, that only went to a certain position, so when it reached the right place it would click, and that one would be done. When all four clicked, I was set. Then, once I did a slow count to ten (which took more concentration than it should have!) the pressure backed off some too. Having the Halo in my vision was a little strange, and no one was swaying any more when I looked at them. Dr McGirr and Michelle were pleased that no one had been able to hear me in the hall way — evidently some people are very loud about their discomfort during that process. They don’t have Katherine with them.
Once the Halo was set, family was let back in, and I was photographed and admired from all sides. Then Dr St George, my medical physicist came in to measure how the Halo and my head fit together. This involved a clear plastic bubble on my head, and a little metal rod that poked through it. There were times I thought he wasn’t actually reaching my skin, but according to John it’s just that my skin was that numb. My skin remained numb in some areas through August 7, so it was pretty well numb. Katherine was able to take a picture before Dr St George measured, but because of how exact and careful his measurements had to be, he asked for the room to be still and quiet during measuring. We practiced a moment of restraint and refrained from more photos until the measuring was complete (much to my frustration). It is my brain these precautions were protecting, so I’m not complaining. Much. The photojournalist in me, would have liked photos of him doing the measuring too.
Once I was all measured, next came my MRI. I got to: 1) shift to a wheel chair; 2) go up one elevator; 3) go out to the main hospital lobby; 4) through some doors to a back area; 5) go up another elevator; 6) and go across the sky bridge to Oregon Imaging Center. I chatted with workmen who were getting off the elevator as I got on, and joked about welcoming people to the hospital in my slightly loopy state, with head frame.
I had the little tote bag Jazzmin and Logan painted for me, and I was all set with my IPOD for music during the MRI. I expected the MRI to be an easy thing to go through. Oops. With head gear on they couldn’t give me the earphones for the music. I got earplugs to cut down on the sound a little bit, but no music. My favorite MRI tech wasn’t there, which was disappointing. I think I’ve only had two MRI’s before this, but it’s been the same guy both times, and he’s been really good, that’s Daniel if anyone wants to ask for him. For this MRI, in addition to the head cushions, there was an extra bit of equipment that they attached to my Halo as well. It was heavy and solid, and I presume gave extra reference points. There ended up being a lot of stuff around my face. They looked into whether they could set up the mirror so I could see out of the tube, but with all the head gear, that wouldn’t fit either. So Michelle and the MRI tech set me up as best they could, but with no music and no mirror it was pretty claustrophobic in the MRI tube.
Then came the good part! This was a special, detailed MRI, consisting of twelve full minutes of continuous buzz saw noise that jiggled my fillings and made my stomach flop about every ninety seconds. I spent those twelve minutes considering whether I was claustrophobic enough to panic, whether the dogs and cats and goats had actually been fed at home, and how Logan might be doing. Eventually it ended. They said it looked as if it had gone well, but they would let the doctor check over the scans while I was still down there, in case he needed anything else. A fan blowing in to the MRI tube during the procedure would have been a big help, but once it was at the waiting point and I was out, that was much better again.
They decided the MRI was ok, and not only let me move back to the wheel chair (after taking off the extra pieces they’d attached to the Halo), but took off all but the port to the IV, so that I could move my arm more freely. I guess having survived without additional sedation to that point, I was passing a milestone. The trip back-up-across-and-down was less exciting, although I got to carry a little of the headgear, and while we waited for the elevator some of the same workmen were there, so we chatted again. It turned out that they weren’t allowed to ride the elevators with patients, but they asked if my Halo hurt, and I said, “no, not really, although getting it put on wasn’t fun.” The MRI was my least fun experience for the day. Worse than the Halo being put on. I was happy to answer the workmen’s questions. I suspect it made their day a little stranger to talk to someone with a frame bolted on to her head, but they wished me well with the doctors killing my brain tumors, and we said goodbye as the elevator arrived.
When we got back to the room everyone was already waiting, so I was carefully moved back to the bed, just and tried to call Daddy to say Happy Birthday. However, there is something about being in the basement with concrete walls four feet thick, and near radioactive stuff, which caused cell phones to not work. Back to the wheel chair I went. Michelle and Logan and the whole entourage of us, went up and the out to the parking area in order to call. I found I was able to slip the cell phone between the Halo and my head, so that worked well enough. I also checked voice mail, and let John return Melanie’s call (the mom who was picking Logan up a little later for the rest of her day’s activities). It was probably 8:45 by then, if I’m remembering right, because I was thinking I’d catch mom and dad before they went to see their movie.)
We went back down to the room, and I got to see photos of what Logan and Jazzmin had walked past on their way to breakfast (toilets by the flock, and some sculptures in someone’s yard I think.) as well as hear about Logan’s breakfast and see the picture that had been added to my wall from Logan, Jazzmin and Joana. John set up his coffee so that other folks could have some, having somehow thought I didn’t mean it when I told him before the MRI that he should do it then. Sedated does not mean not-to-be-listened-to. Hospital staff gets perks like good coffee if it’s available. Logan arranged the room a bit more for me, before it was time for her and Jazzmin to head of for the rest of the day.
I was ready to settle down and wait for the long process of Doctors and Scientists programming their computer to gamma knife the targets in my brain at that point. They’d said it could take one half hour, or up to five hours to do that part. My tumors were fairly simple shaped in the first MRI, so probably on the lower end of the scale, but I wasn’t being too optimistic. About the time I was settling in, they came in and said they were nearly ready. It took them less than an hour to do it, I think. This time my IPOD could get put to use. I had it, and I had a little bag Logan and Jazzmin had made me, along with a felted Koi, some fir, fennel, rose, rosemary, lavender and a quartz rock from Leah Ann, one of my physical therapists, who was keeping a candle lit for me all day. I had on a yarn necklace, Sandy, Logan’s and my friend (who’ll be six next week), made me, plus my rubber bracelets. I still had all my own clothes too. Off I went to the Gamma Knife room. I saw Dr Wendland, my Radiation Oncologist, finally, who then went down to meet and say good morning to John and the other folks she hadn’t met yet.
The radiation was nearly anticlimactic. The couch/bed part moved a little when I got on it, like getting on a ride at a fair. I had to lie down carefully in just the right place. Then they shifted the couch around electronically until my neck was comfortable. Next, they locked my head in to their equipment via the Halo. All this stuff was done with me flat on my back and two to four people bending over me (which was a strange perspective) Pillows were tucked under my knees and feet, and a band was placed around my arms so they didn’t fall off the table. Blankets were added to keep off the chill. Dr McGirr took a picture (and Katherine tells me that John sent him back to take more) for me, to boot. I’ll need to make sure all my medical folks get a copy of this and of pictures if they want them. Gods do I document! The ceiling is painted with a mural of what might be a French Impressionist view of the Willamette valley. It’s probably documented somewhere, but I didn’t ask for a pic of that. My medical team went through and called out a whole bunch of numbers while the couch moved around into the positions it would be in for the procedure. The first session was going to be around seven five minute “packets”, with the couch shifting out, changing position and shifting back in again, for each one.
Once it was set, everyone but me, left the room. I lay there. The machine backed me up so my head was inside and I couldn’t see the mural any more; my music started playing, and there I sat. Lay. No extra noises, no lights, no bells and whistles. Just before the end of one packet a chime would play, so I’d know that the couch was about to move. John says, according to my vitals, it looks as if I slept. It’s possible, but Versed affects the speed of breathing too, so it could have been that. I wasn’t able to write down my entire play list or I’d be able to check the time. I do remember a lot of it:
John McCutchen: Calling All the Children Home
Jose-Luis Orozco: Paz y Libertad
Gerry Garcia Band: Rubin and Cherise
Warren Zevon: Don’t let us get sick
Triskel: Grania’s song
Grateful Dead: Franklyn’s Tower
The Indigo Girls: The wood song
Greg Brown: Daughters
Steeleeye Span: Prickly Bush
Warren Zevon: Poor poor pitiful me/span>
Grateful Dead: Touch of Grey
Cara Dillon: There were Roses
Dar Williams: What do you hear in these sounds
The order is only approximate. When Rubin and Cherise played, I told the Medical Team it was a long hair song for the physicist who’d wished for long hair like mine. (It starts out “Cherise was brushing her long hair gently down…” and he said “thank you”. Mostly it was quiet. When that first set was done everyone came back in and unhooked me while they changed out the head on the machine. The head pieces are half domes filled with 201 holes for the 201 radioactive beams. They weigh 400 lbs each and are moved by a very smooth hydraulic system. They are made from medical grade titanium, as was, I think my Halo might have been too, but I don’t know now. It wasn’t shiny like the dome. I got to watch the dome change out, as it balked and wouldn’t come off and had to be reengaged and tried a second time. They also added side plates to my Halo in order to have my head in the position they wanted for the next part.
John was invited to go see the radioactive set up with Dr St George and vanished like a puff of smoke, after saying he was glad I looked ok. Carolyn was still gone from having taken Logan and Jazzmin to their 10 AM meeting point, and had missed the whole waiting game. Katherine sat with me and assured me that even though I could feel a lot of pressure on the bridge of my nose again, they were not removing my nose and it would not fall off while the Halo was being removed. She also told me that she’d never seen a nose removed in that way and she’d be surprised if it happened now. Then the Halo was gone and it was done. I got band aids in front, and lunch arrived. Carolyn was in to see the very end of the Halo removal and band aid application, standing behind me with flowers — which made the antiseptic gel smell much better than usual. (Me still loopy? Why do you ask? I liked the floral antiseptic gel!) I got to eat everything I’d ordered for lunch, which looked like way more when I ordered it than when it arrived. My sandwich turned out to be really bad. No one else would eat it either, but there was plenty of other stuff. Carolyn brought chocolate pudding, which we both ate. Joana appeared with groceries for us to take home for later. Michelle checked back several times to see if I had a headache, or a bad headache, or needed anything else. She brought me Tylenol and suggested a quiet dark room before trying other medicines, which did help a little later. She also brought me an ice pack, which helped a lot. Every so often I’d turn my head and feel as if the Halo was still there, which was a little strange. That happened when I woke up during that night too, which was a little strange. I ended up sleeping with the IPOD playing, so that I’d have something to orient on, when I woke up.
People came and went. I ate. John was gone for half an hour or an hour, being a science geek with Dr St Charles. Katherine went and took pictures of them. We replaced my hospital band aids with Fairy Band aids that Joana brought for me (made with real fairy wings the box says — I’m a little concerned about that. I’d rather see “no fairies were harmed in the making of…) and put my yarn Fairy Hair back in for a little while until it seemed too heavy.
Around two we got ourselves together, and after an official discharge from the hospital (John had to sign the paperwork because I was considered incompetent due to the sedation, although my copy at home is simply, not signed, interestingly enough), we removed ourselves to Carolyn’s house to make calls saying I’d survived irradiation and was still drugged up but doing well. Melanie and family brought Logan and Jazzmin back and many kittens were petted and chased before we all went our separate ways.
Logan and Jazzmin went to sleep in the car on the way home. Logan was out until some time the next morning, while Jazzmin got up to eat around 8:00, then disappeared for the night with a cat in tow. John and I stayed up until about 8:30. I ate and stared blearily at the computer. John did chores. I slept more that first night than I’ve slept in many of the preceding nights, although I skipped the sleeping pill the doctors had given me. The steroid that is reducing swelling in my brain, evidently gives me insomnia, but exhaustion and tranquilizer counteracted that. This morning (9 August 08) I got up at 3:00 AM. The house hadn’t been opened for the night and it was hot and stuffy, which put an end to sleep.
The steroid should get reduced gradually over the next two months. It already has been some, but being able to walk is pretty important, and the steroid have cut way down on my typical Fibromyalgia pain too. I’ll have an MRI around the first week of September to look and see that the tumors have shrunken to scar tissue appropriately. If the doctors don’t like what they see I’ll have another MRI sooner after that. If they do I’ll go to a schedule of MRI’s, CT’s and Dermatologist checks every three months. July 14 of this year was my three year cancer free anniversary. Except these two tumors were growing unknown at that point. So here I am starting out again as a survivor. I feel as if I’m counting sobriety dates.
Thursday John got to go to work, and Carolyn gave up another day of her time to come with her girls and be here, as a responsible adult, as I sat and swayed. If I worked at it, I could think and put coherent sentences together, but my walking and balance were bad, and my concentration was shot all to hell. I started a cross stitch project for Phil which went pretty well. I think I was more with it on Wednesday than I was Thursday. Carolyn was a whirlwind, and her girls being here gave Logan something to do other than jumping up and down at my elbow.
Once John was home again, and Carolyn left, we spent a while figuring out where she’d put things away. I do that when John puts things away too, actually, although Carolyn chooses different places again. I’m going to label everything one day.
The hospital called to see if I was recovering reasonably well, and decided they’d call again the next day because I was still feeling more of the effects of the sedative than they’d expect. By Friday it was greatly reduced again. The things that say, “Return to work in 24 to 48 hours” aren’t taking in to account light weights like me.
I don’t know yet if hair will fall out from the radiation site. Maybe I’ll be lucky and it will turn white in a single spot. My biggest worry is why the metastases appeared, and what I can do to prevent others from appearing in the future. I’ll be following up with the Radiation Oncologist, a Medical Oncologist, a Nutritionist, a Naturopath, an Acupuncturist and, as always, my wonderful General Practitioner who caught this in the first place. I’ve got a daughter to raise.
As an addendum, it’s 10 August 2008 and I feel human. A little weaker than normal but human. Yesterday I expected to be able to drive again, but felt too weak and too cruddy. We went in to Eugene and walked around Saturday Market and visited Gay Pride anyway, but much of it was with me not only using the cane but leaning on John or Carolyn’s arm for balance. I refuse to let life stop for this, but yesterday was hard. Today is starting out well. I think the steroid, which was reduced back on the 5th has let some of the swelling in my brain come back, plus Radiosurgery may have aggravated that some. If trouble with my balance or right leg continue or worsen I’ll be back in touch with a doctor quickly, but today it’s fairly good so far. In the house I’m find without the cane and balanced on one foot when I was out of the shower. Physical therapy’s exercises to cut down on the swelling and increase mobility in my feet are probably helping too, I did two out of three sets of them yesterday, plus a lot of walking which wasn’t on the list but has got to have done something for my circulation. An exercise bike is in my future, something so I don’t wobble but can get exercise and motion daily.
