30 Days Post-Brain Radiation

February 2019

I had another 2 weeks of radiation on the tumors in my brain. I think there was something trying to grow back, and the tumor bed where the 4cm tumor was in my parietal lobe had been that now has shrunk enough to be radiated. I am a little fuzzy on this because they talk about the right and left occipital and when I had the original scans and surgery, they talked of one in the occipital lobe and one in the parietal. Shrug.

I started radiation about a week after getting home from rehab. I took Lyft and the Cancer Society’s volunteer rides to get to treatment downtown. This radiation treatment sucked. The first time didn’t seem so bad. This time there were a bunch of difficulties. They still had my mask from the first time. Because of steroids and hair growth and a few other things, it doesn’t fit exactly the same. For some reason, too, it doesn’t put my head in the position they want it for treatment. I’m not terribly claustrophobic, but after an hour or more in this mask, I wanted to jump off the table. I suppose it was a good thing I couldn’t just jump up and off the table. It wasn’t like my body would allow that anyway.

There were a couple of times I was near tears from the stress of it all. I worked pretty hard with the radiation techs to figure out ways to solve the positioning problem. The engineer in me wants to fix it. The patient in me just wants it done and finished. During one session it occurred to me that we should try a chin lift like we used in CPR. We tried it a couple of times. It worked once.

I went home with nasty headaches more times than I want to count. I had visions of ordering a pizza before leaving the hospital and taking it home for dinner. Too many of these treatments were so late and stressful that I couldn’t stand the thought of waiting in the lobby for a pizza or a ride.  I might have eaten after getting home about half those times, my stomach being in a knot didn’t make eating too appealing.

A couple of weeks after the radiation was done, I started losing hair. I didn’t really notice it until one day I looked in the mirror and saw a big bald spot on the back of my head. I don’t know why a bald spot on the back of my head bothered me less than being completely bald and missing both eyelashes and eyebrows from chemo, but it did. Maybe because my hair had just started growing back enough that I could think about the purple highlights I wanted to get after it gets long enough, and I was getting tired of wearing hats.

Another week or so later the fatigue caught up with me. Remember, I’m still on IV antibiotics. I still have an infection next to my brain. And I’ve just gotten back home from 2 weeks of hospitals where I couldn’t sleep worth a crap. Now I have also got physical and occupational therapy at home and I’m working again. I’m tired. Tired beyond belief some days. Thankfully, work isn’t horribly demanding and I can take an hour nap instead of lunch on those days that I need one.

I think that being on chemo at the same time as my previous radiation masked the fatigue last year. I don’t remember being this exhausted even after 7-1/2 weeks of radiation treatments to my chest.

I was thankfully not nauseous during this process, either. That might have been because there was a break in the middle of my treatment brought to us by Snowmageddon Seattle 2019. Like when I first moved to the Seattle area in 2012, we got about a foot and a half of snow. It stays cold enough that the snow sticks around for a few weeks before being rained away again. This time wasn’t really different. The worst part was being home with home health nurses and therapists coming and going and their not being able to get in the driveway. The condo association couldn’t be bothered to clear it. Myself, I was afraid that if something happened, the police and/or fire department wouldn’t be able to get in here to get me out and take me to the hospital. I think pretty much everyone in the community sent a nasty letter to the management company because they eventually hired the landscape company to come and clear it out with a Bobcat.

There are new things going on. My vision is changing every few days. I am Ubering to the eye doctor’s office multiple times during the week to get new contacts so I can see. The first time I went in, my prescription went down by half. Then, a couple of days later, it inched back in the other direction, but not enough to wear my old glasses again. Another few days and it was back to half again. I am thinking that it will go back to normal in a week or so. The optometrist thinks it will be months. I’m worried about what my insurance will cover.

I am kept busy by therapy appointments and the eye doctor for the bulk of February and into March. I’m working full time but not at anywhere near my old capacity. This frustrates me but I’m grateful for an employer who will work with me to make sure I can stay on the insurance as long as possible.

The therapy is going well enough. I have a couple of coworkers and neighbors who helped with groceries and prescription refills. One of the therapists continually reminded me that I have to be home bound and can’t be out getting groceries or running errands while they’re coming to my home. Funny thing is that I went out exactly twice for groceries and supplies exactly twice during the whole month of February. I went to a pile of doctor’s appointments but they don’t care about those.

I’m supposed to have a bath aid come out one a week or every other week to help with a shower. At 5 weeks in, I still haven’t seen one of those. I have asked the OT to help me with a shower both times she’s been here. I’ve also had the OT help me put clean sheets on my bed. I am still easily worn out doing this formerly simple task.

Toward the end of therapy in March, I finally get a bath aid. After one shower, I came out of the bathroom to find all of my laundry neatly folded at the end of my bed. That was a nice surprise.

The speech therapist is helping me to organize tasks. We find that I can focus on things for about 30 minutes at a time before I need a break.






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Cancer is one of those conditions where we are either willfully ignorant or woefully naive about all it entails. I’m not sure which was more prevalent for me. Probably equal parts of both. Before diagnosis, I knew people who had surgery and were sent home with a clean bill of health. I knew a few people whose cancer returned after the “magic” five-year mark who were treated again and went on to live long enough to consider them to have had a “fulfilling” life. I knew others who were treated for several years until they could endure the chemo no longer and died a few months after stopping treatment. There are a few where I’d heard they were diagnosed and died shortly afterward.

For those who I’ve watched go on this journey, once diagnosed myself, I learned there’s so much they didn’t tell me. Now I wish they had. Maybe things were left unsaid because they didn’t want to burden or scare me. Or maybe it was too hard for them to talk about. Or maybe there was so much that was just hard to comprehend. I don’t know.

I thought I was going to be able to work through chemo, that it would be like having a nasty cold or the flu. You know, where you stay home, drink tea, take your antibiotics and sleep a lot. I thought I’d still be able to function more or less like I did before. Chemo doesn’t work that way. It steals every iota of energy you have. It destroys your appetite. Makes food taste like hell. And then… you discover that it kills your ability to think, to focus, to remember things. Sometimes it makes it hard to sleep. Sometimes that’s all you want to do.

I thought oncology appointments would be like any other doctor’s appointments – show up a few minutes early, see the doctor, maybe have some lab work done, and go back home 30-60 minutes later and not need to be back until my annual check-up or I got sick in between. Nope.  Oncology appointments don’t work that way, either. Yes, the lab work gets done and you see the doctor, but I had no clue about the time in the chemo chair, and that time had no real limit. I had no idea that there would be many MRIs, CAT scans, PET scans, additional mammograms and ultrasounds. Or that there would be additional follow-up appointments with cardiology, audiology, neurology, neuro-psychologists, speech therapists, the onco-plastic surgeon, the anesthesiologists, the radiation oncologists, the  GP, ophthalmologists, optometrists,  social workers, palliative care doctors, and extra trips to the dentist for fluoride treatments so that chemo doesn’t destroy your teeth along with your heart, your memory, your hearing and your ability to feel your fingers and toes or feel them without pain. Some of these appointments are weekly. Some monthly. Others quarterly. There are pre-chemo appointments. Pre and post-surgical appointments. The list feels endless. 

On days that I’m feeling lucky, I can consolidate many of these appointments into a day’s venture to the hospital. Sometimes I squeeze the lab visit in during a commute to the office. The dentist or optometrist’s visit into a lunch hour. It’s not an easy dance to achieve any kind of balance. Well, that and the thought of achieving any kind of real balance is an outright lie. I tell myself that I’m going to say, switch the sheets on my bed tomorrow. So I get up in the morning, take the dirty sheets off the bed, get a shower, brush my teeth, put on a clean mattress pad, and now I need a nap.

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Home At Last

January 22, 2019

I was discharged from rehab today. It is January in Seattle. It’s cold, raining and wet. I’m leaving this place with the clothes that I brought and wore when I was admitted to the hospital 17 days ago. They’ve been washed and folded. I don’t have a warm jacket. I have no gloves or a hat. I went home in a Lyft so it wasn’t like getting into a cold car myself and waiting for it to warm up. That somehow seems like it would have been worse. The driveway seems darker than it did before. There is no one out and about.

My truck is still in the driveway where I left it 2 weeks ago. There are, oddly, no packages at my door. I have my bag of clothes and toiletries and my cane. The stairs are, thankfully, similar to the ones I practiced on at rehab. The pitch and height are about the same. I go up one stair at a time.

Had I not been so ticked off about my phone situation, I’d have sat in my chair to watch TV, figure something out to eat and gone to bed early. Instead, I looked up my phone receipt on the Verizon website, printed it out and called for another Lyft.

The Verizon store isn’t too busy, but there are other customers around.I expected, for some crazy reason, that when I walk into the store with a dead-ish phone that they’ll replace it in-store. Nope. Not anymore. They put me on the phone with warranty service from a hard and uncomfortable wooden stool in the store. The thing I didn’t pay attention to in this was the store hours. It’s now around 5 pm. I’m tired, I’m hungry and I want this phone thing behind me. I’m feeling very tired. Two hours and a lot of sternly worded threats to leave and go to AT&T or T-Mobile later, they are shipping me a new Google phone in place of the Motorola piece of garbage. Kicker? I won’t get this new phone for 2 days. Wait… 5 because it’s the weekend. Awesome. I could have done all this from home. I should have done this all from home.

When I’m done with the warranty service person, I try to get a Lyft ride to go home. I can’t get the app to work correctly. I’m so tired and hungry I can’t think straight. The guy in the store realizes that the warranty person disabled my SIM card and puts me on store wi-fi. The bad thing about this is that when I’m on wi-fi, there is no GPS reading from the phone itself, so when the Lyft driver shows up at the strip mall where I am, they have no idea where I am or where to go. This driver of course goes in the opposite direction of where I’m standing in the rain. I tried to call them but can’t. I go back in the store and tell the guy what happened. He fixes the phone and I get another Lyft ride home. I’m now too tired to think about sitting somewhere else to eat, so I just go directly back home.

When I get to the door this time, there’a pile of boxes sitting there. My neighbor had picked them up for me while I was gone, and knowing I was home, she delivered them to me while I was out. She had no idea I couldn’t get them in the house by myself. Thankfully, the Lyft driver helped me carry all these boxes into the house and up the stairs. I am finally at home to stay.

The house just feels empty. And lonely.

I carry my bag upstairs, unpack and put my jammies on. I am afraid to fall on the stairs. I’m afraid to fall in my bathroom. I look around and there isn’t a good way to install a handicap bar either next to the toilet or near the shower. I’m still thinking about how I would get a shower chair up the stairs by myself and know in my heart there’s no way I could.

This isn’t me. I used to go to the gym. I used to ride my bike 100 miles because I could. I lifted weights. I did cardio. I could stand on one foot. I built Habitat houses. I stood on ladders and swung hammers.

Who have I become?

I’m feeling the loneliness of cancer now. The isolation. The fear of losing my independence. The fear of dying. It’s not all hit me yet, but it’s starting to creep in. I feel like a cancer patient now, and I don’t like it.



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Heading Home from Rehab

January 20, 2019

So, after 17 days of hospital and rehab stay, I’m being sent home. Ready or not, here I go. Hint: the real answer is no, I’m not ready. In fact, I’m scared witless. I have 2 sets of 14 stairs to get in and out of the house. One set is bare wood with treads. The other st is carpeted. I’m more afraid of the carpeted stairs. It’s cold outside which means that it’s cold in the garage where I’ve got the futon. Even if I could sleep down there, I’d still have to go up 14 stairs to go to the bathroom. Well, that’s not gonna work. I’m going to have to mostly live upstairs where the bathroom is just steps away from the bed which is probably fine. This means that once I’m downstairs I’m down there for the day. I’ll have to live in my reclining chair for a bit, too.

Unlike when I was in the hospital, there is no real planning to this here. There is no social worker talking to me about how this will work. No one explaining what the various steps are. No one making sure there’s even food in the house. Hint. There’s really not. There are no conversations about what my insurance will cover going forward.  I’m not really prepared for this. I thought I was going to be able to line up some help at home and haven’t been able to do that.

My sister can’t come out because of work,  my parents are on another planet and my aunt is trying to work it into her schedule because she’s helping with her grandson. I still don’t have a working cell phone. I’m sure there’s a reason for all of this chaos.

I live alone. I’m ready to be home, but not quite ready to be home by myself. If that makes sense. My family are mostly back in Minnesota or are in California/Arizona. I haven’t had a boyfriend here in WA in 6 years. There isn’t anyone who can some stay with me on short notice to help out. I’m feeling pretty nervous about this.

I’m eager to get home to my own bed where it’s quiet and the blankets fit the bed. I’m not thrilled about being there alone and going up and down the stairs with a cane. I’m not wild about how I’m going to manage showers, either. I don’t have a walk-in shower. I have a fairly tall tub surround. I’ve been told and shown a bunch of handicap bars and tub chairs and stuff while I’m at rehab. I have no mechanism to get any of this stuff purchased or rented and delivered to my house before I get home. Even if I did, there’s no way I’m going to be able to carry it up the stairs in my condition. So… more things to figure out.

I will have home health visits for some time after I get home. The first visit will be an OT to help assess fall risk in my house. There will be a nurse as well. The rest are on a schedule and there will be someone checking in pretty much every day for the next 6 or so weeks.

It’s about this time that I realize that no one at work has a clue what’s happened or where I am. To my knowledge, no one is looking for me. My phone is still dead and I don’t think about trying to call it to get voicemails.  This is concerning. Well, there is one coworker who brought me to the ER on the 5th, but because my cell is dead, she has no idea what’s transpired or where I am since I was admitted. I ask a nurse to help me search for a phone number for HR. She’s able to find the switchboard number. Good enough. There’s a company directory and of course I can’t remember anybody’s name, nor can I pronounce the HR person’s name in a way that this software will recognize.

I eventually remember a manager’s name, leave him a voicemail and ask him to call HR and Benefits for me. Oh, and remember how the hospital doesn’t have voicemail or ring to the nurse’s station? This unit doesn’t, either, even though they told me the first day that my phone would ring at the nurse’s station if I was away. So when I’m trying to coordinate help for when I get home, and I’m in PT sessions big chunks of the day, I’m missing calls because my cell’s still dead and the hospital phone doesn’t have a way to capture calls coming in from my family or my coworker to see how he can help. Great.

I eventually found a way to contact someone from my company to let them know I am still alive. Note to self: keep your HR contact phone numbers in your purse from now on. In fact, keep a paper with all the important numbers in your purse. Counting on the cell phone isn’t the best move.


When the time comes to go home, I’m first told I’m going home around noon. Then it changes to later in the afternoon. The most bizarre thing about all this is that I’m not going back home in a medi-cab or with any type of nursing help. They’re sending me home in an Uber. Alone. No one will meet me at home.

I’m stunned. I’ve got a cane and an awkward bag of stuff to take back home. There will be no one to help. I can only hope a neighbor will be around when I get there.

Before I can go home, I have to be re-trained on how to connect my IV antibiotics again. It’s the same home nurse organization that I’d had before. I’ll still be on the antibiotics for a while. I have follow up appointments with doctors scheduled already. Home health is scheduled for a day or two after I get home.

This morning while I was getting ready to leave, one of the Occupational Therapy Assistants came in to check on me. She saw my phone and asked about it. I told her it had been dead for 2 weeks. We hadn’t been able to charge it. She jury-rigged the cord and was able to get a charge on it. I was both happy and disappointed about this at the same time. I kind of wanted to hobble in to Verizon with this dead phone and make them feel bad that this piece of junk phone hadn’t worked for over 2 weeks and I was feeling abandoned. One way or another I’m getting a new phone after I go home, and it won’t be another of the same model again.

I have a long list of prescriptions to fill at the pharmacy before I leave. I am wheeled down to the pharmacy and the door by a volunteer. The pharmacy stop isn’t as bad as the volunteer thought it would be. The nurses had called in all of the prescriptions far enough in advance. Because my phone is sort of working now, I order my own Lyft ride home. The ride is thankfully uneventful. I very carefully make my way up the driveway to the door. It’s January and it’s been raining. It gets slippery and I’m scared shitless of falling down.




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Going Home Soon

January 14, 2019

There’s been talk of me going home sometime in the next week or so. This, to me, is kind of out of the blue. The conversations with the doctor are not horribly consistent on this topic.

I’ve been on the IV antibiotics for the entire time I’ve been here. I’m starting to feel a little better. I am walking pretty well with a cane. I am able to get up and get to the bathroom without having to have someone hold my gait belt the whole time. We’re doing longer laps and walks around the hospital. I still get tired easily. I’m doing okay with the  exercises and being able to manage in the shower without slipping. None of these activities are back to how I was before all of this started in January. Kind of depressing.

My left arm/hand has gone from being Michael J Fox hand to Swedish Chef hand to feeling closer to normal. After getting the TheraPutty and playing with it watching TV, I woke up the next morning with it feeling almost normal again. I am not feeling as spastic doing the neuro tests. My left side is getting stronger. We’re still doing a lot of work on balance and stairs. I’m having my orthostatic blood pressure tested every time I do PT. We need to ensure that I’m not going to fall over every time I get up from the bed or a chair. I just didn’t appreciate the test being done at 3am when I got up to go to the bathroom. Turns out, neither did the charge nurse.

The speech therapy still seems difficult. There are assignments that I thought I did well, but found out afterward that I completely messed them up. One is a worksheet figuring out a time card and work schedule. There is another that goes through a tasks list where I do things in forward and backward alpha order that is timed. I have a hard time switching tasks. These are tasks that would be similar to things I would normally do at work, and keeping track of my appointments and meds at home, so it’s important that I be successful.

I’m eating lunches and dinners almost every day now with other patients and one of the volunteers. There are some other family members around that will join us when they are here. I’ts nice to talk to outside people about something other than cancer and brain problems.

I sort of learned how to play Skip Bo with one of the other patients and his wife. We talked about getting together to play again after we both got home. I say “sort of” because (a) my brain doesn’t work like it’s supposed to, and (b) it’s hard to learn a game when the people you’re learning to play from are highly competitive with each other.

We “watched” the SuperBowl on the big screen in the dining room while playing Skip Bo, My patient friend and his wife aren’t football fans, which means we didn’t watch much of the game. None of us was particularly invested in the teams playing, so I didn’t miss it much.

I’m probably moving rooms. There is a guy who’s going home soon and I’m being told I’m moving to his room because it’s quieter. I’m a bit of a light sleeper and my room was right next to the nurse’s station, which is where everybody hangs out at break time and when some of the earlier risers start waking up around 5am. I’m still not a morning person so I don’t do this well.

Other than that, we’ve washed some of my clothes. I had them brought back from the dryer so I could fold them. I found that to be more difficult than I would have liked. I’ve never been a big fan of folding long-sleeved t-shirts, so when my brain isn’t processing how they or my jeans fold, it takes longer and is more frustrating than I remember.

I am eager to do well so I can go home to my own bed where it’s quiet and the blankets fit the bed. A place where I don’t have to wear non-skid socks that don’t fit to bed every night. I’m not as eager to find out how I’ll manage a shower in my tub. Nor am I as eager to go up and down the stairs at home, especially when I’m carrying things.

I’m hoping that my sister or my aunt can come out and help for a week. I feel like I’m asking a lot to have them come back and help again. Unlike when I had my brain surgery and felt fine, I feel like I need more help this time.

I have to know when I can go home before I can arrange any help, and I’m not getting anything like a definitive answer from the doctor or any of the therapists here, so we’ll just have to see how this plays out.




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Goin’ go Rehab

January 12, 2019

They tried to make me go to rehab
I said, “no, no, no”
Yes, I’ve been black
But when I come back, you’ll know, know, know
I ain’t got the time
And if my daddy thinks I’m fine
He’s tried to make me go to rehab
I won’t go, go, go

Amy Winehouse 

So… I’m goin’ to Rehab. Not the kind Amy Winehouse is talking about, though. This is more like I had a nasty car accident or stroke and I’m going to learn how to walk again rehab. The kind you see on “60 Minutes” where the Iraq or Afghan veteran who lost his leg is being treated with a new fancy prosthetic leg rehab. Except that where I’m going probably won’t have any of those vets around. Just lots of older people with walkers.

They moved me to the oncology floor last night. I’m getting a Kadcyla infusion tomorrow before I head to the other hospital for rehab. My bag is re-packed. I’ve gotten a shower. I’m still a little wobbly on the walker but getting better. My phone’s still DOA. At about 1 pm, a medi-cab driver showed up to pick me up. Let me just say I could smell him from more than 10 feet away. I thought at first that something in my bag to set down in something nasty. Nope. Not me. Not my bag. Hope it goes away.

He was a decent enough guy. He kind of reminded me of a friend’s ex-husband. Kind of soft spoken but nice. Sort of had a Minnesota accent. And no, my friend’s ex never smelled like poop. Nice try.

He wheeled me down to his fancy minivan where I got in chair and all. He locks the brakes on the chair and has some sort of blocks so the wheels don’t move. It wasn’t too bad a ride over to the other hospital.


When I got to the other hospital, we parked in the front circle and he wheeled me in through the front door. I got wheeled past a fancy coffee bar. Smelled good. Kind of wished at that point that I actually liked coffee. I hadn’t had anything decent to eat for over a week. Although I did get to a point at the hospital where I figured out the 4 or 5 things on the room service menu that were edible. They generally don’t screw up eggs much. I also learned that they don’t mess up egg salad sandwiches much, either. Macaroni and cheese is inedible. Broth/Soup is bland and flavorless. Hamburgers aren’t hamburgers at all. Not sure what they are but they’re gross. Chicken sandwiches are okay. I did finally get so bored with what they had that I tried the pot roast. It was all right.

During my previous stay a month ago, I figured out that I could have Door Dash bring me real food. So while I was in the oncology unit, I ate pretty well. Not quite as well on the Neuro floor, mostly because I didn’t have the brain power to care, and also that my phone was DOA After arriving to the smell of decent coffee, I had higher hopes for the food at this place.

Just a note for Seatteites or if you’re ever staying downtown Seattle:

Mad Pizza is really good. Smith does a weekend brunch that I’m sure is to die for if you’re sitting at a table in the restaurant because it was still really good luke warm after being delivered to my room. Also, Din Tai Fung delivers downtown. It’s kind of spendy, but a nice treat. I like dumplings and they’re a testament to the fact that garlic makes everything taste better, including spinach and kale. Their green beans are super yummy. And best of all… they have melted chocolate dumplings for dessert.

Okay, so back to my arrival at rehab.

I got checked in by a nurse. We spent probably a good hour going over paperwork, vitals, doing an ultrasound of my bladder to make sure it was emptying when I used the bathroom, and generally getting me situated. I will be here for a few weeks, or at least until I can get to a point where I am more self-sufficient again.

We talked about my left side weakness. I started out by describing my lack of control over my arm as “Michael J Fox hand. I could reach for things and try to pick them up, but the spatial part of my brain would put my hand somewhere not where I wanted it to go and I’d have a hard time telling it to grasp things to pick them up. When I tried to hold it straight out, it would wave around a bit.

There is a very rigorous schedule in rehab. There are at least 3-1/2 hours of therapy scheduled per day. Don’t plan on getting much rest if you ever have to go to one of these units.  They’re busy and they’re noisy, and you won’t have enough time in between these appointments to get in even a 30 minute nap. There is Physical Therapy (PT) at least once or twice a day. It can be 30 minutes or longer, and there are multiple sessions during a day. Occupational therapy (OT) is the same. The OT is usually the one in this setting that takes you to shower. They make sure that you know safe ways to get yourself bathed without falling down. A good skill to have. Then there’s Speech Therapy. This one seems odd at the face of it, but it’s not really about talking.

The Speech Therapist makes sure that you’re able to swallow food and liquids without choking. A good thing. Then, once that’s out of the way, this is the person who makes sure you can think straight enough to do daily tasks. So can you keep track of your appointments, your medications, and generally use common sense if you had any before all this started.

The nurse explained the bed and chair alarms.  I’d already graduated from needing those at the hospital but they decided I had to earn the right to have them turned off. I also learned that meals are at specific times. Breakfast is at 7:30 am. Lunch at 11:30 am and dinner at 5:30 pm. I don’t remember the last time I ate on an actual schedule. I generally eat when I’m hungry. I’ve been more of a grazer my whole life, and more so throughout chemo, so this eating on a schedule thing was going to be interesting. The menu, however, looked a whole lot better.

After getting settled in and learning who my nurse and nurse’s aide was, plus where the call buttons and such were, it was time for dinner. I had some pasta. It was pretty good. Although, anything different from what I’d been eating the past week was going to be fairly appetizing. When ordering for a meal, I basically ordered for 2 meals at a time. When ordering for dinner, the breakfast order goes in at the same time. This is a little difficult to get used to as well. When I’m eating dinner, I’m not yet thinking about what I want for breakfast. I am so used to getting up and waking up for a bit before deciding if it’s a cereal day or a waffle day or an egg day.


Another thing I learned on my 1st day was that the hospital was quiet compared to this. My room is right in front of the nurse’s station. There’s a lot of activity there. At night they try to be sort of quiet. The other thing was that there is some construction going on at the hospital. Not sure if they’re building a new building or parking garage or what. It’s not like I can get up and look out the window to figure it out. So at 4:30 am there are construction trucks outside. These trucks have backup alarms. At 4:30 am next to a hospital where people are supposed to be resting. On the 2nd night, they not only went beep-beep-beep at 4:30, they dropped a big load of metal beams on the ground.Then at 5:00 am, there’s a shift change at the nurse’s station. There’s an awful lot of break room/water cooler blabbering out there at 5:00. Then at 6:00 other patients start waking up and forgetting they have bed alarms and then at 7:00 they come in and wake you up so you’re ready for breakfast.


I’m on a floor with 15 other patients. All of them have had heart attacks or strokes and have fallen and hit their heads. I didn’t get to meet anybody else today. It was a lot to get here and get settled in.

A fun fact about hospitals? Even if they’re relatively new, the heating/air conditioning systems suck. I happened to be in one of the old wings of this building. The room is either hot and stuffy or cold and breezy. There is no in between.

Another fun fact:  The warmed (or not) blankets they bring in do not fit the bed, and the mattress and pillow are covered with plastic so you are either sweating or freezing or sometimes both at the same time. So… I ended up tangled in all these blankets, which made it fun to get up and go to the bathroom in the middle of the night. Thankfully, they don’t generally wake people up in the middle of the night unless they absolutely have to. My bladder felt otherwise. There’s another story here I’ll save for later.





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The Abscess – Part III

January 5, 2019

After going through all the admitting procedures, scans and tests, I was exhausted. I was still trying to process finding yet another metastatic tumor in my brain. It grew there in only 3 weeks’ time. From what I’ve learned since, the steroids help create an environment that’s friendly to cancer. Awesome.

This feels sort of like deja vu except that instead of the oncology floor, I’m back on the neuro floor. This means that a nurse comes in and does neuro checks every 2 hours. There have been a couple of doctors in to see me. A handful of residents, a couple of hospitalists, a neurosurgery resident, and maybe a couple more that I can’t remember because not only was my brain not working from chemo, being exhausted, stress and the abscess, there were just too many to remember them all. All of them insisted on doing neuro checks when they came in the room. The nurses were vaguely amused that I could anticipate which test was next.

On Friday night before all this mess started, my left arm started twitching like crazy. There were a couple of ways I could get it to calm down but it just didn’t stop. I felt like it was a side-effect of one or both of the antibiotics. They decided to keep an eye on it. The interesting part was that no one could see or feel it except me. By the time I get to the hospital, I can’t walk by myself, even to go to the bathroom. I have a nurse that comes in and puts a gait belt on me and I get to use the bedside commode. Now I’m feeling pretty crappy in general so I don’t really care that much about peeing on a chair made of PVC plumbing pipe in the middle of my room as long as I am not wetting myself or the bed. So much fun.

Then I discovered that my cell phone isn’t charging. We tied plugging it in different outlets in the room. No change. We tried a different charge cord. Still no change. This isn’t as huge a deal to the nursing staff as it is to me, so basically, unless I can find someone local to do something about it for me, I’m stuck with no phone other than a landline. Remember the part where my memory is absolute crap after chemo and it’s somewhat worse after all this abscess stuff? Yeah. I don’t know anybody local’s phone number. They’re all stored in my dead phone. The only people whose numbers I can remember are my parents, my sister, and my aunt. This is only because I call them regularly from my car and because its voice recognition is about as useful as using a pitcher to eat cereal, I don’t know any of my coworker’s numbers. I don’t know any neighbor’s numbers. I only know a couple of neighbors’ last names. but it doesn’t occur to me to have someone look  any of them up. I did have my mom try to contact the coworker who was with me the night I got admitted. Her husband is a photographer so I had my mom chase him down and asked him to have my friend contact me at the hospital.

Another fun fact. The hospital room phones have no voice mail. They have no rollover to any nurse’s station or anywhere else for that matter. If you’re not sitting next to it and can’t otherwise answer it, you’re out of luck. I got one message from my friend via the charge nurse. We couldn’t connect because right after I got admitted, she and her husband went out of town and weren’t available to help anyway.

Day 4

Things are calming down a little and I still can’t really stand up on my own or walk anywhere by myself. I can get around a little bit with a walker in my room. So at least I can use the regular bathroom instead of the bedside commode. I’ve had a shower, which felt good. I was starting to feel pretty gross. I had a Physical and Occupational Therapist come by. Thankfully, they decided it was also time for me to start brushing my teeth again. I don’t feel quite human yet, but I’m not feeling worse. Bonus.

We’re in the process of deciding next steps. They’re talking about sending me to an acute rehab unit. I’m also due for a Kadcyla infusion on the 12th. Partly because I can’t go home by myself and partly that even if I had help at home, I couldn’t go up and down stairs or anything like that anyway. I’m still a huge fall risk. I’ve already taken a good fall at the hospital with the walker on my way back to bed from the bathroom. I didn’t get particularly hurt. Just a bruise on my back. Don’t ask. It was more of a surprise than anything else. I still feel bad for the nurses and nurse’s aide that had to do all the paperwork on that.

I have a social worker that’s helping figure out the insurance part of rehab and then there’s the conversation about whether I can get the chemo infusion there or not. When all is said and done, I’m moving to a rehab unit at another hospital on the 12th. Before I go, I’m moving to the oncology floor again so I can get my Kadcyla infusion before I leave because there isn’t room for me in the oncology unit there at the other hospital and the acute rehab unit can’t/won’t do the chemo there. It’s a training and hazmat issue for them. The infectious disease doctor returned from vacation today. I finally saw him around 8 pm. He said it looks like the Daptomycin is working better than the Vancomycin. I’ve got to be on this stuff for at least a month before we’ll know if the infection is cleared up or not. Fun stuff. Soon I’ll be off to rehab.

One really nice thing that happened this week is that my oncologist stopped by and dropped off a really beautiful quilt that she’d gotten from another patient whose friend made it. The colors and pattern were perfect for me. IMG_20190307_134607


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The Abscess – Part II

January 2, 2019

After restarting the Vancomycin on the 31st, the panels are still too high. So we’re switching to Daptomycin on the 5th.

On the day that the nurse was coming out with the Daptomycin, I started noticing that I was feeling weird. When she first arrived that afternoon, I told the nurse that I felt like I was walking like I had a stroke. I wasn’t really feeling my left foot. Now, this is new because I hadn’t had neuropathy on that side at all, and I wasn’t recognizing it as anything like that. The neuropathy I had on the right side was more tingling and more in my toes than my entire foot. My left arm/hand were feeling more numb, too. I would like to think that if I were any kind of a nurse and a patient told me that anything was going on that made them feel like they’d had a stroke, I’d take notice and start asking questions. This nurse didn’t.

I had invited a coworker over for dinner and to watch a movie. We decided on fried chicken from Church’s for dinner and to watch the special on R. Kelly instead of a movie. The nurse had stopped by around  4 pm. She left and went to their office to pick up the Daptomycin and some other things, and I assume, to get herself some dinner. She left my place in the middle of evening rush hour. While she could get to their office by taking “back” roads, it’s still not a fun drive at that time of day in the dark in the middle of winter. My friend arrived maybe 30 minutes or so before the nurse got back, which was about 7 pm. She brought the syringe of antibiotic and had to stay and watch me for an hour in case I had an allergic reaction to it. So we started watching the TV special and eating our chicken and cole slaw. Everything was fine. The nurse left after the hour she had to stay, so around 8 pm. While we were watching the R. Kelly thing, my friend looked over at me and told me my face was getting really red. I didn’t feel the flush or anything on that side. I usually flush from chemos anyway, so I wrote it off to that. After a bit, I started noticing tingling on the other side of my head/face. I mentioned this to her. She kept an eye on my face and said about 3 minutes later that my neck had big red blotches on it. She took a picture with her phone and showed it to me. I was a little concerned because the tingling in my face wasn’t going away.

Around probably 8:30 or 9:00, I wasn’t feeling right. Along with the blotching I just felt something wasn’t right. I told my friend I was going to go pack a bag and she could drop me at the ER on the way home. This made sense because she lives on the other side of Seattle, and the hospital downtown would be pretty much in the middle of a loop she could take to get back home.

This may sound nuts but I know what anaphylactic shock looks like and I wasn’t having any of those particular symptoms. I could breathe fine. That wasn’t changing. My lips weren’t tingling or turning blue. Nothing was itching. So, I went up to pack the bag. I got some clothes together and had my phone charger and most of my toiletries in the bag. I was in the bathroom and started feeling more weird. Not dizzy really, but not really here, either. I sat down on the toilet seat lid and promptly slid off onto the floor.

My friend yelled upstairs and asked what happened. I told her that I’d fallen onto the floor. She asked if I was hurt. I told her I was still assessing. I was worried that I’d put my hands out to catch myself and sprained my wrists or something again. I wasn’t in any pain. I didn’t hit my head. But… I couldn’t think straight. I remember sitting on the floor and thinking, “What is going on here?” When my friend came upstairs,  I couldn’t get up off the floor. I had no strength or coordination. I couldn’t figure out how to get on all fours. I sat back down on the floor and tried to think. Tried being the key word. I decided that I’d scoot out to the hallway and call 911. My friend thought that was an excellent idea. While I was doing that, she went down, unlocked the front door and came up to help get the rest of the bag packed.

I called 911 and told the dispatcher what was going on. He thought I was having an allergic reaction. I told him, no, it wasn’t an allergic reaction but some other kind of drug combination reaction or something like that. About the time the bag was all packed, the fire dept arrived. They also determined it wasn’t an allergic reaction, so we opted to try to get me up and walk me down the stairs. That was a fun adventure. My left side was pretty much useless by this point. It was like walking Gumby or more like taking a Slinky down the stairs.

I had a death grip on the fireman in front of me’s hands. One of the other 2 firemen had the band of my sweat pants in his hand. He was basically doing bicep curls every time I started to lose my balance all the way down the stairs to the front door. So basically, this fireman behind me gave me repeated wedgies all the way down the stairs.  Instead of going to the local hospital they said I could go with my friend in her car to the hospital downtown, so that’s what we did. We promised that if anything changed we’d pull over and all 911 again.

We made it downtown. It took 5 people to get me out of the car and into a wheelchair. I was in the ER for several hours. They came and took a bunch of blood samples, a chest x-ray and took me for a CT of my head.

I learned that in the course of 3 weeks, not only had the infection not started going away, but was getting worse, I also had a new tumor in my brain, this time in my cerebellum. It was pretty small, about 6 mm, but a new tumor nonetheless.

I got admitted again. I think I finally got up to a room around 3 am or something like that, and I was past exhausted.


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The Abscess – Part I

December 14, 2018

When I went in for my post-surgery/radiation follow-up with the radiation oncologist on December 18th, I wasn’t expecting what came next.

When we looked at the MRI, she showed me that the tumor that was radiated was shrinking, the tumor bed from the tumor that was removed was shrinking (the swelling was going down) so we could start thinking about radiation on that, and then she pointed at the screen and said, “and then we have this thing here.” I asked, “What’s that?”

Dr. P. “It looks for all the world like an abscess.” Goody. Just what I wanted. Another problem. I was admitted to the hospital that night. It was a Friday. I had no inkling there was a problem, much less an infection. I again, had no symptoms. I don’t know what I expected, but it wasn’t this. Being admitted to the hospital wasn’t on my list of things to anticipate.  Apparently having a nasty infection next to your brain along with the stress of all of it messes with your logic circuits.  So, I went home, packed a bag with some clothes, my phone charger and some toiletries. I got a ride back to the hospital where I got escorted up to a room. The next day I saw a neurosurgeon, the neurosurgery PA, and an infectious disease specialist. They gave me two options.

  1. Open my head back up and drain it.
  2. Drill a burr hole, get some of the fluid out and test it to make sure we’re throwing the right antibiotics at it.

I wasn’t thrilled with the idea of having my skull re-opened because I mistakenly thought that the recovery from having a hole drilled into my skull and having a surgeon again messing with my brain would mean fewer restrictions than I had when they cut my skull open to remove the 4 cm tumor in the first place. I didn’t really want to go through all that again, so I opted for the burr hole. Turns out I should have asked more questions. The restrictions and effects of the surgery to drill a hole in my head were about the same. In hindsight, I should have let them open my head back up, drain the stupid thing and clean it all out. At least hindsight is 20/20.

As soon as I was admitted and settled, they started an IV  of Vancomycin, which is a pretty strong antibiotic. I was still on steroids, so they kept me on those to keep the swelling under control.

After a week at the hospital in the oncology ward, I was sent back home with my IV antibiotics.

The Port

I don’t know if I’ve actually described how my port works before, so I’ll do it now. I have what’s called a port-o-cath that the surgeon put in my chest before I started chemo. The port has a catheter attached that goes directly into one of the big veins near my neck. Some of you may remember the vena cava from biology or anatomy class in high school or college. That’s the vein I’m talking about. The point of the port is to avoid having to do blood draws and give IV chemos, fluids and other IV drugs in my arm every time I go in. Apparently chemo does a number on your veins. Well, that and dehydration. So rather than go on an archaeological expedition every time they need to draw blood or give me chemo/antibiotics, they put a needle in the port instead. It actually hurts a lot less than getting stuck in my arm. The needle can stay in my port for up to 3 weeks at a time. Can’t really do that nicely with your arm even with a a PICC line. I haven’t had one that I can recall, but it’s sort of like the port-o-cath except that it’s in your arm instead. The port’s way easier to manage and is a whole lot more comfortable and unnoticeable. Anyway… back to my tennis ball of antibiotics.

The Vancomycin comes in a pressure-charged ball and I have to administer it at the same time every day. It’s about the size of a tennis ball. They’re shipped to my door on dry ice every couple of weeks. I have to keep them in the fridge and then let them warm to room temperature before I connect the tubing on the ball to the tube from the needle on my port. The ball takes about 40 minutes to empty. You can kind of watch it deflate as the liquid all gets pushed out and into me. I suppose you can do the same with a regular IV bag if you were that bored. The nice thing about these pressurized balls of fluid is that I don’t need an IV pole in my living room, nor do I need to drag one around my house. I can put the vanco ball in my hoodie pocket or next to me on the couch til it’s empty. When the liquid’s all out of it, I disconnect it, flush the port with saline and then a shot of heparin to “lock” it and keep clots from forming in the catheter. Remembering to take it out at the right time was the hardest part.

There’s a special contracted nursing team that comes out to the house once a week to take a blood sample so I don’t have to drive into the hospital every day. I got trained on how to administer my own antibiotic and flush my port every day. The hardest thing about it was remembering to take the Vanco-ball out of the refrigerator a couple of hours before I needed to connect it so that it warm up more to room temperature. This antibiotic has to be taken at the same time every day. I did okay with the Vancomycin for a little bit. I get blood drawn once a week while I’m on these antibiotics.  The blood panels include what’s called a vanco-trough that measures the amount of the antibiotic in my blood. There are also panels to monitor the infection and kidney function. Both were starting to go up at the end of December, which basically meant my body was storing this antibiotic instead of processing it, so the infectious disease doctor started talking about switching over to Daptomycin instead.  They wanted to watch the panels and see how well I tolerated it as well as look at the abscess before making the change.

Between the time I was sent home and Christmas, the pharmacy called and told me the Vanco troughs are too high so I need to skip some doses. After Christmas, I got a call telling me I need to stop taking it until New Year’s Eve because the numbers were too high. The next conversation was with the doctor because my body’s not properly processing this drug. The next step will be to change the antibiotic.




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Kadcyla Side Effects

This is going to be more or less a list of the things I noted about a month into taking Kadcyla, which I started about September of 2018, if I remember correctly. There’s a lot of not being able to remember going on again.

Neuropathy – still a lot of tingly in my feet and fingers.

Taste – went from metallic to soapy. Chips are more tolerable but still not good.

McDonald’s still sucks, but that’s okay. I don’t need McNuggets anyway.

I kind of got peanut butter back but lost most cheese. Not sure why.

Dry mouth

Low potassium – so I crave some salty things and it makes most of them taste gross. This is almost ironic.

My teeth are super-sensitive. I think this is an extension of neuropathy than a specific side effect of Kadcyla.





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