1-Year Post Op

May 11, 2019

A year ago today I had surgery to remove the cancerous lump from my breast and also have a bilateral breast lift. It’s taken me the whole year to adjust to my new look. For probably 8-9 months, every time I looked in the mirror, I thought about how these breasts didn’t belong to me. Now, a year later, they feel more like they’ve always been mine. Or at least remind me of some that were mine when I was a lot younger.

I was looking at some of the pictures I took post-op the other day. There were long red scar lines across my chest and under my arms. Now there are faint white lines. There are scars I can feel but can’t see. My range of motion is significantly decreased as I feared it would be. I’m not sure if this is due to where the underlying muscle tissue is clipped near my outer chest wall or if it’s more related to the nearly 8 weeks of radiation I had following the surgery. I will probably never know.

I still have much numbness and a little pain here and there under my arm. I stretch my arm daily so I don’t lose any more of my range of motion. It’s hard to do.

I didn’t expect this. None of it. No one told me what to expect, either. I’ve had surgeries before. My right knee has been operated on 5 times. My left one twice. My shoulder was pulled apart and put back together once, and the recovery from that surgery feels now like it was a walk in the park compared to this. In each of those cases, I recovered my range of motion fairly quickly. I can still reach down and touch my toes. I’m not so great at quad stretches, but then after the 1st knee surgery, that was a tough one to get back anyway. This is different. Very different. I don’t feel like there is much elasticity in my chest muscles.

When I lift my arm straight up in front of me, I feel the pull all the way down through and below my right breast. It hurts more when I pull it over to the right to get a deeper stretch. I can’t raise it 180 degrees anymore. I stretch every day and there never seems to be much improvement. It always goes back to feeling like a very tight and overly cooked piece of chicken.

It took many months after the surgery to find a bra that fit and was comfortable. I didn’t notice before how uncomfortable underwire bras were. Now I couldn’t wear a bra with an underwire if I wanted to. Well, I can’t even stand to try one on at this point. I don’t notice much change in how my clothes fit because of the surgery. It’s more from the weight I’ve lost due to chemo.

In some ways I’m glad I didn’t need a full mastectomy. I can’t imagine what this would feel like had I had either one or both breasts completely removed.

My ex-husband didn’t like my breasts and wanted me to have a breast lift at the ripe old age of 22. I had no desire to have surgery on my breasts. Not then and not in my early 50s because of cancer, either. It was a conversation with a guy friend who helped me get through the divorce and losing my job that convinced me that implants weren’t something I ever wanted to have. He told me that even the saline implants felt hard and unnatural. I took that to heart. The idea of having to have tissue expanders for a year wasn’t an attractive idea, either.

In reality, I’d have been fine having them both removed and going flat. Little did I know at the time, the tumors in my breast and lymph nodes were already spreading the dandelion seeds of cancer to other parts of my body.

 

 

Posted in Uncategorized

Playing Contact Roulette

February 5, 2019

I woke up this morning not able to see with my glasses or contacts. I was getting headaches and I could only read things with my glasses off. I made an appointment with my optometrist. I explained what was happening to him and they did a vision test. It turned out that my prescription dropped by half of what it had been essentially overnight.

I’ve been blind as a bat since I was a kid. Until about 3 years ago, I was always the one with the worst vision in the room. I finally met a couple of people who’s distance vision was worse than mine. I didn’t think that was possible. So it was pretty weird for me to hear from my eye doctor that my vision had changed so drastically so quickly. I went home with some trial contacts.

February 7, 2019

Grocery shopping. I knew it was going to snow. The weather people were forecasting at least 6 inches. I needed to make sure I had food and supplies in the house. My friend’s wife graciously came and picked me up in the Hamster-mobile and took me to the grocery store and Target. We had a nice dinner at a Chinese restaurant neither of us had tried before. With the snow coming, I needed to make sure I had food in the house to last at least a week.

February 8, 2019

I noticed another vision change. This time, my glasses work a little better than they did before, but the contacts are all but useless. I went back to the eye doctor. My vision had slid a little bit back to what it used to be. I got another new pair of 3 week contacts.

The real fun came when I went to leave the doctor’s office to go home. It had started snowing. As soon as those fluffy flakes started falling, the Lyft and Uber drivers scattered to the wind and disappeared. I was stranded on the other side of town. I couldn’t drive. I didn’t have my medications with me.

I ordered another ride. I got ghosted again.

I ordered yet another ride. This one called and asked where I was going. When I told him, he sounded concerned. I asked if there was a problem. He said no, but never showed up. So I tried again. Same thing. Ghosted. This was getting frustrating for me and the doctor’s office. They were sending their staff home. One of the doctors needed to go pick up her kids. I was still there when she got back and relieved the last of her staff. She was ready to drop me at a Starbucks or somewhere else nearby where I could get a ride.

I eventually got home via a friend who happened to be on his way home and could stop to pick me up. It wasn’t a fun ride home. Seattle snow is like Minnesota snow in late March or April – it’s that wet, heavy stuff that turns to ice the second any pressure is exerted on it. We used to call it “Tournament Snow.”

Rather than go look up on my spreadsheet how much my vision swapped back and forth, I’m just gonna list how many times I had to go to the eye doctor’s office and get new contacts.

2/5/19
2/8/19
2/18/19
3/6/19
3/8/19- Visual Fields
3/11/19
3/19/19
3/25/19
3/29/19 – Visual Fields
4/1/19
4/4/19

The contacts I got were all 3 week contacts instead of daily wear lenses. So I had to clean them and store them. For the uninitiated, they need to be cleaned every time you put them in or take them out, and they need to be taken out of the case, cleaned and the case cleaned once a week, too, plus replacing the cases once a month.

See why I prefer daily wear lenses I can just toss at the end of the day?

 

Contact Cases on Counter

 

 

Posted in Uncategorized

Rehab Highlight Reel

January 21, 2019

I spent 11 days in the acute rehab unit. Sorry you didn’t get a day-by-day account. Remember my phone has been dead now for 2 weeks and I didn’t have a tablet or laptop with me. I’m not sure I had the brain power or emotional space to write anything anyway. So you’re getting the highlight reel instead.

Acute Rehab is pretty much the same thing every day – Breakfast, then Physical Therapy (PT), Occupational Therapy (OT) or Speech Therapy, then lunch, then more PT, OT and/or Speech Therapy, then dinner, a little TV, then bed. It’s tiring. My brain and body aren’t up for all of this. I am sicker than I thought I was when I went into the hospital on January 5th.

On my first full day in the rehab unit, my first therapy appointment was with the speech therapist. Luckily, I had already done a few sessions with a speech therapist at the hospital for chemo brain. Even more fortunate, that same speech therapist is on the hospital rotation for the rehab unit, and I loved her before, so this wasn’t a scary or bad During my first therapy appointment was with her. We did a couple of puzzle-like things and she left me some homework. Because I’m writing this based on my failing memory and it’s been almost 6 months since I was admitted so I’m a little foggy on some details.

Occupational Therapy – The first night I was there I had ordered some sort of meat for dinner that required cutting. My coordination was so bad that I couldn’t hold my knife and fork in a way that would actually allow me to cut my food. I mentioned this to the OT. She brought me a couple of pool noodle looking things to put on my fork and knife. That, surprisingly, worked, and it worked well. I felt like an adult again.

Next, she brought me a tub of TheraPutty. It’s basically colored Silly Putty that comes in several different colors that indicate how stiff it is.  I’m supposed to sit and squeeze it and play with it with my “bad” hand. This actually worked pretty well, too. Within a few days, my left hand just decided to start working semi-normally again. Hallelujah! Now if the rest of me will cooperate.

Being that this was the middle of football season, and my next-door neighbor was a football fan also, we watched football together from our separate rooms. Some of this was because I wasn’t allowed to get up and move around by myself, and some because he had family around quite a bit and I wasn’t going to impose on their time together. I eventually got to meet him. The funniest thing about this is that when he was watching a game, I was trying to find it on my TV. I found a rugby match and watched that instead. The referee whistles just happened to almost coincide most of the game.

Physical therapy included some riding a stationary bike, walking around the floor with the walker, learning how to maneuver it around things and making sure I didn’t walk into stuff with it. After a bit I graduated to a cane. More walking around the floor and going up and down stairs. There were also some exercises in picking things up off the floor. Eventually, I was going for longer walks around the hospital.

One trip we did a treasure hunt of sorts down to the gift shop and back. I should have asked to go to the coffee shop or something or even to have bought a wallet. Oh wait… I was living in scrubs so no pockets. Yay.  It was a combined test of my strength, stamina and my ability to remember steps and what to do if I got lost. Needless to say, I forgot steps and got lost. I should have asked for popcorn or something to leave a trail.

When we got down to the hospital lobby, there was a guy, maybe a volunteer, playing the piano. We sat in a chair and listened to him play for a bit. I kind of wished I could put my hands on the keyboard. I knew already that I wouldn’t remember how to play any of the songs I used to play 10 or so years ago. 😦  Maybe I should have asked anyway. Oh, well.

Another OT session we had a therapist who was also a musician. This was kind of fun. We did therapy as a group. We pretended to play keyboards with TheraPutty on the table. Having played French Horn, trumpet and piano for so long, I was happy to find some of that muscle memory was still there.

There were a couple of other things that weren’t quite as fun for me. There was a little kids’ jigsaw puzzle. I couldn’t figure out how the pieces fit. That bothered me. Then there were some worksheets that baffled me for a while. We also did this thing with a light board where I had to stand on a foam mat and touch the lights as they came on. I didn’t do that well the first couple of times I did it. Well, there are a lot of things that I expected to be able to do better than I did the first few times I tried them. Some of the worksheets for Speech Therapy are a good example. Folding clothes was another. It was really frustrating and a little depressing to realize that I didn’t have the

 

I’ve been on the IV antibiotics for the entire time I’ve been here. I’m starting to feel a little better. There’s talk about sending me home. Naturally, there is no real planning to this piece. My family are mostly back in Minnesota or in California/Arizona. I haven’t had a boyfriend here in 6 years. There isn’t anyone who can some stay with me on short notice to help out.

It’s about this time that I realize that no one at work knows where I am. To my knowledge, no one is looking for me. This is concerning. I was able to get one of the nurses to do a Google search for my HR person’s name and my company name. She found me a switchboard number for the office. Good start. The switchboard number’s got a company directory on the voicemail. Of course it can’t find my HR person.  The directory says there are too many people with her name. The LOL on this is that her name is pretty unique, so it’s clear to me I’m either not pronouncing it correctly or she’s in the directory differently. So now I have to think of someone else. My memory is still crap so I can’t think of anyone but the guy I used to work with that left the company to go back to school to be a nurse. Eventually, I remember another manager and call him. I left him a voicemail to please let HR and Benefits know I’m not dead (yet) and what’s going on. Then I ask him to contact our mutual friend who went back to school because he and his wife don’t live too awfully far away from me and I’m hoping they can help out here and there.

Oh, and remember how the hospital doesn’t have voicemail or ring to the nurse’s station? This place 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.

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 glued on. 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, which is probably fine.

I will have home health visits for some time after I get home, too. The first visit will be an a  nurse and an OT to help assess fall risk in my house. The rest are on a schedule and there will be someone checking in pretty much every day.

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. I’m not wild about how I’m going to manage showers, either. 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. Even if I did get a bath chair delivered 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.

 

Later on I called it Swedish Chef hand.

 

 

 

 

 

 

 

Posted in Uncategorized

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.

 

 

 

 

 

Posted in Uncategorized

Naivete

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.

Posted in Uncategorized

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.

 

 

Posted in Uncategorized

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.

Discharged

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.

 

 

 

Posted in Uncategorized