April 25, 1931 until the morning of August 23, 2016
Traffic was coming to a halt in the middle of highway 163 a couple of miles outside of Pella. Which is weird. Very weird. Even slow farm equipment doesn’t usually bring it to a stop. I strained to see around the big diesel dually carrying 4 Amish gentleman in front of me but still couldn’t see what was happening. It only took a few minutes and less than a quarter of a mile to find out.
As I rolled all the way onto the gravel shoulder to get around what was left of the car and the parts spread out on the road, my eyes followed a young looking man who crouched next to the passenger door. The car looked like it had been compressed at a high rate of speed, presumably by running into a slow moving flatbed which was now stopped in the grassy median. The young looking man was talking to the passenger who was not responding and I wondered if he was the driver.
I later found out that the passenger had passed away and that she was pregnant. Just like that. Gone.
Twenty minutes later, I’m sitting next to Dad’s bed at the hospice house, watching his labored, intermittent breathing. His hands are at times moving as if he has things to do but just can’t get them done. I want to help him, ease him, comfort him. I talk to him, tell him I’m here. I ask him what I can do for him. His answer is only his raspy, struggling breath.
It’s been two days since I was here last. Since then he has stopped eating, drinking, swallowing and as far as I can tell, communicating. I don’t know if he understands I’m here. The nurses showed me signs of his encroaching death. “Could be five minutes, could be a couple of days. Probably not tonight but you never know.”
When I saw him on Friday, one word whispers were the extent of his end of the conversation. I sat on the floor next to his lowered bed and tried to guess what he was thinking, what he wanted. He seemed uncomfortable, agitated. When asked if he was in pain, he gave a breathy “no”.
I was with him most of last week except when I had to return to Des Moines for my own chemotherapy. Every day revealed a noticeable decline. When it was just the two of us, I would lie on the floor next to his bed which had been lowered to the ground. I put my head by his feet so I could see his face through the bed rails. I watched him. I studied him. I drank him in. I wanted him to see me if he opened his eyes. I wanted to read his face, his hands for any clue of a thought or need.
He not-so-slowly gave up his habits. Reading the paper. Watching the Olympics. He talked less. He ate less. He moved less. Everything less.
And now he lays here. He will not escape death this time. In many ways, it has already happened. My Dad is gone. His shell is left but not for long. I miss him already.
Let’s start with Mike.
He’s been in the hospital, on his back, in a room, since early January. He’s had multiple surgeries to close his pressure ulcer but that damn thing still isn’t completely healed. It’s improved but until it’s closed, he can’t be up in his wheelchair or start rehab in an attempt to build some strength again. How weak do you get being in bed for months at a time? Sigh.
He’s had multiple infections, as are common in this situation, including MRSA, MSSA and a UTI that morphed into uro-sepsis that damn near killed him the first weekend he was in the hospital. He crashed three times in 48 hours and ended up in critical care, sedated and intubated. He’s depressed and bored and lonely. I visit him when I can but trying to make mom’s, dad’s and my own appointments/surgeries/chemos doesn’t allow for me to be there every day. He’s either been in the hospital or a skilled care facility since the beginning of November. This is taking a toll on him that I cannot fully comprehend.
If he can’t get this wound healed, he won’t go home. Ever. He will be in some sort of nursing facility indefinitely. He is at high risk for infections and he is becoming increasingly antibiotic resistant. His odds of getting healed, gaining enough strength to navigate a life on his own in his apartment and live a semi-independent life are decreasingly rapidly.
Mom and Dad.
Dad has been undergoing chemotherapy for his recurrent bladder cancer since November. He’s losing weight and is increasingly frail. A PET scan a couple of weeks ago revealed that his cancer has progressed. We’ve stopped that flavor of chemo and we’re trying another that has lessor odds of being effective. But he is giving it a shot. We’ll see how he tolerates it, watch his weekly blood panel and vitals and discuss if a future scan is warranted. We know we can stop at any time.
It’s been a rough week for Dad and those around him. Last week he got up in the middle of the night and fell. He wasn’t able to get up but was eventually able to crawl to bed and pull himself up and into it. Luckily, he didn’t break anything but he’s banged up. Monday he had a port surgically implanted in anticipation of his new chemo. It was an outpatient surgery but we were there hours longer than was scheduled. No surprise that he doesn’t bounce back like he used to.
That means Mom and I were in the waiting room for hours. She’s having pain in her hip, arm and now her foot. I had her stretch out on the floor since we were the only ones in there at this point, and I massaged her IT band and arm as I do when we’re at home. It seems to help.
Mom is overwhelmed and often emotional. She understands what is going on with Dad. I’m trying to simultaneously ease their burden and make sure all the business that goes along with this situation is taken care of but man, it is often more than I can do, especially when she disagrees or is resistant to what needs to be done which is damn near all the time.
Mom and I went outside to get some fresh air after Dad was in recovery. Serenity Hospice House is across the parking lot and we walked over and went inside. We talked with a nurse, looked around and took a pamphlet. It’s a beautiful facility.
Dad was VERY unsteady post surgery but we got him home. I brought food and cooked them a late dinner and they both ate readily. I try to make enough for them to have leftovers. They’re mostly subsisting on fast food these days with the exception of breakfast and I know it’s not appetizing to Dad. He says he doesn’t have an appetite but he seems to eat whatever I make him quite well. Maybe my eyes on him make the difference.
Mom and I helped him get ready for bed. I slept in my clothes (since I hadn’t anticipated staying) on the couch so I could hear if he tried to get out of bed….although slept is probably not an accurate word. Mom and I helped him again in the morning. He was still unsteady but a little better. I made them breakfast, got Dad settled in his chair and returned to Des Moines for my own appointment that afternoon and Madonna’s visitation.
I returned Thursday morning for Dad’s first chemo in his new port and to navigate the process with them. He was moving better and his banged up spots had improved a bit. I made them dinner and gave Dad a haircut although it’s getting pretty thin. We talked about everything and nothing. There’s a lot to be handled right now but sometimes you just need to talk about something else.
I felt good enough about how they were getting along to return home. Mike’s doctor had called and surprised me with wanting to discharge him earlier than expected so I needed to tend to that situation, attempt to manage it. I do my best to take care of myself, recognizing that if I’m not around and in good health, I can’t help them. I crammed in a day’s worth of “getting shit done” in addition to a walk, for my mental health as much as my physical, and visited Mike.
I got a phone call from my other brother late in the afternoon informing me he found Dad on the driveway about 30 minutes prior. Evidently Mom had fallen in the middle of the night and taken a full length mirror down with her, breaking it’s frame. Dad was insistent on fixing it and was puttering around in the garage. When he headed back to the house, he went down. He has a goose egg with a scrape on his head and also his knee and probably some other banged up spots he isn’t copping to. I called and talked with both of them. Both minimized what happened, refusing to acknowledge the severity and potential implications of a situation like this. Amazingly, he avoided breaking anything again. The odds of getting that lucky a third time are not ones on which I would bet.
I’m encouraging them to sell the house and get into an independent or even assisted living as quickly as possible. They agree that it’s the right thing to do but getting them to actually DO it is “like pushing water uphill”, as Dad said Thursday night. Dad worked for Rolscreen, Pella Corp for 45 years. They have lived in their house for over 40 years, moving there after living for 10 years in a house across the street. Change is not their thing. We do not have the luxury of time. Many things need to be handled in a very short time but between doctor appointments, Mike’s ongoing situation and trying to coax them around like a herd of turtles, attempting to convince them of what needs done and the speed at which it needs to occur is often a challenge beyond my abilities.
Next up, me.
When I settled into my thoughts, when I finally slowed down for the day and started to process everything I’d experienced since I woke, I washed my face, I looked in the mirror and I stopped. I realized that she hugged me so tight for so long because it was goodbye.
She also knew that I could see things through her eyes in a way that few could.
Her cancer recurred a few months before I knew mine had, also. We have both been playing a metaphorical chess game; us against rogue, proliferating cells in our own bodies.
We get poked with big needles and little needles, they drain clear plastic bags of toxic and expensive drugs into us, we have radioactive scans in rooms with signs that read Nuclear Medicine, we take our clothes off and expose ourselves in ways in which our vulnerability cannot be articulated, we change drugs for as long as drugs can be be exchanged, we see teams of doctors in multiple locations, sitting in waiting rooms (or doing lunges, jumping jacks, push ups and yoga as I usually do) for hours upon hours, sometimes hundreds or thousands of miles away, weekly or monthly. We think, we anticipate, we worry, we lose sleep and we make decision after decision, the best ones we can, some documented legally for now, some documented for after we’re gone and some just in our heads. Then we live with them for as long as we can.
The stakes of this chess match are not just our lives but our health, our freedom, our happiness, our integrity, our longevity and our ability to LIVE. The stakes are everything that leads up to our lives being snuffed out. The last moment, when life stops, that’s the easy part. It’s living with it up to that point that’s increasingly tough.
I still have the occasional chemo nurse ask me how many more treatments I’m scheduled to have. My response is “that depends on when I’m dead.” That doesn’t phase me. I’m desensitized to those questions, those comments. I’m not desensitized to losing loved ones. I will never get used to that.
Last night I returned from Vail where I experienced the rich and beautiful at every turn while accompanying a friend for her post surgery follow ups. I like to observe, to listen and there was plenty for me to absorb. I noted several conversations while I was there in which people complained about what I considered trivial things, many of which they had the power to change.
This morning I woke in my own bed in a humble and modest part of the Midwest where it happened to be garbage and recycling day. Because I’m a bit of a freak about getting every last bit out of my house before the moment the trucks appear to take it away for me, I ventured out for the second time to purge my house of a few more recyclables left over from breakfast. I witnessed a man with a grocery cart going through the blue plastic recyclable containers in search of bottles and cans with nickel deposits. He looked up and waved at me.
Him: Good morning!
Me: Good morning! *waves*
Without a conscious thought, I hustled back inside, grabbed a $20, headed back to the front door to see where he was and if I could catch him. He had moved to my neighbor’s so I walked out into the street, wearing pajamas and bed head, and approached him. He looked at me quizzically, trying to read my expression and anticipate what I wanted with him. I would guess not everyone had kind things to say to him as he dug through their disposables.
Me, with a smile: Hi! What’s your name?
Charles takes his glove off and reaches out to shake my hand.
Charles: It’s a beautiful morning, isn’t it?
Me: Yes, it is. Another beautiful day. I’m Sarah. Could you use this?
I continue up to him in my slippers through snow and ice frozen to the curb and reach out to shake his hand.
Charles’ questioning eyes look at me like I’ve lost my mind. He shakes my hand and takes the bill.
I hold his gaze and continue to smile at him probably looking like a bit of a maniac with my hair going in many directions that defy gravity.
Me: Have a great day, Charles. Good luck with your hunt.
Charles: Thank you! I have a big morning ahead of me staying ahead of the trucks. You have a great day! Thank you!
I turn and my feet crunch their way back to the street. I make my way to my driveway, trying to hold it together until I get back in the house. I turn to look at him as I walk in my door. He is still watching me intently and hasn’t moved since I shook his hand. I wave and he waves back. I continue inside, close the door behind me and start shaking uncontrollably. I begin to sob. I can’t articulate exactly why but the thought that goes through my head, that repeats on a daily basis, is that I cannot always change my own circumstances but maybe, in a minuscule way, maybe I can affect someone else’s. I don’t know if or how I may have changed his but I know in my attempt at a tiny act of kindness, that *I* had a powerful experience of shared humanity that I’m still feeling at this moment. He smiled, waved and conveyed how happy he was to have a gorgeous January day to search for cans and bottles to return for coins, maybe a few dollars. His cheerfulness and upbeat attitude was a gift to me.
My intention in sharing this story is to convey that small acts of un-pay-backable kindness can have deep effects on yourself, for certain. Others? Maybe. They move me to my soul and I hope everyone can experience the same thing, a small moment of compassion, of warmth and connection. Seeing Charles reminded me how fortunate I am to have a home with heat, food in my fridge, a car in the garage, loved ones surrounding me and that I woke up feeling good this morning. I’m not presumptuous enough to pretend I know Charles’ story but if I had to bet, his life is not comfortable. Charles was not the fortunate one in this interaction. I was. I am.
So much has happened since I last wrote that I don’t know where to start. I guess I’ll go with each person and see what I can recall.
Mom is a bit of a roller coaster. Her knee has done well and of all the health issues we’ve dealt with, definitely the bright spot. Her cognition vacillates from fair to suspect. We’re all under a lot of stress and it exacerbates any issues. We have lots of conversations that get repeated. She says “well, I’ve never heard that before” quite often. It’s becoming our normal. I try to let it go unless her misremembering might result in danger. I try to tap into my well of limited patience when I know I’m going to engage her but sometimes it runs out before we’re done. I hate that.
I’ve become a bit of a detective with her. I review the checkbook on occasion and their drugs although not often enough. I glance at paperwork, mail, whatever is laying around while I’m at their house. I look at everything they’ve put on the calendar. I look at the scribbles on post-its by the phone. They clue me in to what’s happening when I’m not there and how their thought processes, her’s especially, are working. It is concerning and often quite sad. I see the writings as a reflection of her grasping at her failing memory. She’s struggling to keep it together. Even her handwriting has changed. It’s gone from confident and flowy and perfect to small and shaky and fearful. Just like her.
This month Mom was diagnosed with early stage breast cancer. They removed a lump during an ultrasound guided core biopsy in the surgeon’s office. When we went back to discuss the findings, we agreed a lumpectomy would be next….until I explained everything we’re dealing with to Dr. Beck. She looked at me and said “how about we try drug therapy for 6 months and have you come back to reevaluate at that time”. We all emphatically agreed and felt lighter after that. I had to repeat to my mom that she may just be delaying the inevitable but considering everything else we’re managing, it was a huge relief, a reprieve to one of our many story lines. She is a private person and honestly, would prefer just to ignore this and sometimes I question if she remembers at all. If you see her, don’t bring it up, don’t hug her, just carry on with her as you normally would. None of us wants people praying for us in church and they don’t want a big deal made about anything.
Lots of people have asked me how Dad is doing. Under the circumstances, he’s doing OK but we’ve set the bar pretty low for expectations these days. He is undergoing chemotherapy and not exactly thrilled about it. He keeps asking me when he’ll be done. I told him that as long as he tolerates it and the cancer responds, we’ll keep doing it but that he can quit whenever he wants.
But then that’s it.
He knows he won’t be around long. We were talking about next year’s football team and he said “but I won’t be around to see it”. They’re administering a rather low dose due to his stage 3 chronic liver disease, his age and weight. He’s increasingly frail and is as thin as I’ve ever seen him. The first cycle was pretty rough for a few days and then a week or so of feeling pretty funky, lethargic. I thought it went rather well. I think it was worse than he expected. He keeps asking me how I felt when I had chemo when I was 30, my first go-round. He has a new appreciation for those undergoing this treatment.
One of the challenging things about Dad’s chemo is the schedule. His cycles consist of chemo on day 1 and day 8, a shot on day 9 and then one or two weeks off depending on how he’s tolerating it and most recently, holidays. He sees his oncologist and gets treatment in Osky on Thursdays because that’s when the doctor visits from Des Moines. It keeps him from having to travel, although it means that I have to if I accompany him, but there seems to be a lot of things getting in the way of these Thursdays. From Thanksgiving to Christmas Eve and New Year’s Eve to the fact that the machine that mixes his drug broke and they’ve asked him to come to Des Moines for his next appointment. Sigh. Dad and I see the same oncologist and now Mom will see him, too. I had an appointment this week and asked for a punch card or group discount.
Getting everyone where they need to be is an issue. It’s falling more and more often to me. Making it happen with my work schedule along with navigating our unpredictable weather is a challenge. I’ve managed so far but I can’t keep up this pace. Changes are coming.
Even with everything going on with Mom and Dad, my brother Mike has rocketed to the top of the concern list. Being in a wheelchair for 25 years causes problems and with Mike, that has resulted in pressure ulcers. He had one 4 years ago which resulted in dozens of surgeries and he spent the majority of the next two years in the hospital, flat on his back, trying to let his body heal. After discovering 2 blockages in his femoral artery and a resulting stent, his body was finally able to deliver nutrients and for the most part, healed. The kicker with Mike is that he smokes. He once told me that he’s smoked for longer than I’ve been alive. Smoking constricts the blood vessels and clogs the arteries. Not what you need when you’re trying to get an extra hole on your south side to heal.
It came to the surface that Mike had a new pressure ulcer while Mom was recovering from surgery. I stepped in and talked with his home health care nurses about what was being done and what should be done. We tried to buy some time but at the beginning of November, we got him to the ER in Des Moines and they admitted him. He spent two weeks waiting for plastic surgery, getting IV antibiotics administered to shut down the infection only to flunk his EKG the morning of surgery. A stress test and echocardiogram the next day revealed that something was definitely wrong. Plastic surgery was canceled and cardiology took over. An angiogram revealed two blockages in his right coronary artery and they inserted a stent. It was good that they caught it but it now meant he had to wait at least a month before Plastics could evaluate him again. I knew what was coming and it wasn’t going to be good. He’d already been in the hospital for a few weeks with me being his only regular visitor. It was lonely, boring and depressing for him and I knew there was much more of that to come.
They were going to discharge him and I needed to find a place for him to go, a skilled care facility that could manage all of his needs from daily IV antibiotics to caring for the pressure ulcer. He wanted to go to Osky. I wasn’t sure that was a good idea. Resources there are scarce, transporting him is an issue and I knew it would be problematic in ways I had yet to think of but the hospital’s social worker got him into a facility and he was happy about it. Well, as happy as you can be in a situation such as this. So, he’s been there since Thanksgiving, existing. I’ve been pushing the surgery schedule with the Plastics doctor and the earliest they could get to him was January 7th. Then they pushed it to the 14th. I went and talked to them in person on Christmas Eve and explained everything we’re dealing with along with the fact that we’ll be forced to start paying out of pocket for Mike’s facility if we aren’t being billed for it already, and that we really need this to happen as soon as possible. They were sympathetic but nothing changed.
Getting Mike anywhere is a laborious process. I got his follow up cardiology and infectious disease appointments in Des Moines on the same day, drove to Osky the night before (about 75 miles), stayed with my folks, picked him up in his van the next day and drove back to Des Moines, shuttled him around to clinic and hospital, latching and ratcheting him down and then unlatching every time we had to enter and exit the van, navigating the doctors and facilities with him, providing my mediation services and then drove him back to Osky only to return to Des Moines that night to my own life after checking over Mom and Dad again. I was exhausted.
Mike cannot navigate these processes. As much as Mom and Dad would like to, they cannot help in this capacity anymore. His inability to talk to medical staff completely goes away due to some serious anxiety about dealing with them. He gets completely overwhelmed and nothing useful emits from him. He has to have someone manage the conversations, the appointments, the decisions and like everything else, these needs are only going to increase. I told him I would do as much as I could for him for as long as I could but that I couldn’t do everything. I also told him that if I’m going to spend my time and effort helping him, he has to help himself. In addition to good nutritional choices, this means no smoking and no nicotine products. These are the death nail of pressure ulcers and heart problems and if he isn’t willing to help himself, I’m done. I laid this out for him and asked him if we had a deal and he reluctantly said yes. He knows I mean it. He knows he needs me. He knows he cannot bullshit me. I look him in the eyes and ask him direct questions. He doesn’t like it but I think he respects that I’m being straight with him and giving him the choice and a small bit of power in his own life. Is he really refraining from this stuff? I don’t know. When I visit him, I don’t let him know I’m coming so it’s a always a surprise. He might be lying to me but for now, I’ll leave it as it is. If I find out different, shit is going down.
How am I? I’m stressed. I’m tired. I’m not sleeping well. I lose my patience at a record rate. Or maybe it’s just getting used up faster than ever. I have a lot of my own decisions to make and actions to take in the very near future. As I said, changes are coming. More on me in my next post.
Mom and Dad and their respective leg issues continue to improve. Mom walks most of the time without a crutch, sometimes because she chooses and sometimes because she forgets. We were out for a walk and someone waved at her. She raised her arm, waved back and her crutch fell to the ground like a fallen tree. Timber! We looked at it, at each other and burst out laughing. We are like a comedy show that most are afraid to laugh at. Regardless, the surgeon did a great job and her pain has diminished enough that she’s almost off the pain pills.
Dad has been using one crutch, against doctors orders, because he thinks it’s going to make him better, faster. I can’t get it through his head that we’re trying to prevent a fall. He wants to get rid of his “attachments” and I can’t blame him.
Dad doesn’t ask for anything so I have to anticipate his needs. Mom has grown quite comfortable with asking for whatever she wants and it makes me laugh. I’ve started having her do more around the house and it’s mostly gone well. She has been washing the dishes, no one does them to her standards anyway, and dusting. We had visitors last weekend and she wanted me to vacuum before they came even though we’d just vacuumed two days before. Evidently she wanted the little lines in the carpet for Cindy and her dog, Brad. I told her it could wait and I’d do it after they left. She then got the vacuum out and let it sit in the living room, presumably so it would pressure me into doing it. It did not work. One other line I have drawn is ironing her sweatshirts and sweatpants. I love you mom but no. Just no.
Dad can now drive around town and it’s really opened up their world. Mom is anxious to resume control and normalcy, whatever THAT is. I don’t have the heart to tell her that much of this is temporary and fleeting. For now, a drive past the dog park or a trip to Walmart improves her mood. The pleasant weather and sunshine greatly impact her disposition in a positive way. When she starts to feel like a caged animal, look OUT.
It takes them much longer to do anything and they get wiped out easily. There are many naps happening throughout the day. I joke about getting them both down for a nap at the same time so I can get some things done for myself but it’s completely true. Mom sometimes makes comments about the disheveled state of my hair or the fact that I’m often wearing a wife beater. “Don’t you have anything better to put on?” It’s tough raising your parents.
The meals provided have already proved invaluable, especially to me. My parents’ complaints about not needing them have lowered to a low mumble. They now look at the calendar on the wall where I’ve copied the information and we all look forward to what we’re getting, when. They still don’t think they need help and they don’t like feeling like a charity case but I keep reminding them that they’ve helped many people over the years and it’s time to let a few folks repay that kindness in a small way. If nothing else, I tell them it’s more for me than for them. Dad seems resigned to it. He looked me in the eyes and said “meals now are better than flowers later”.
What’s next? Appointments of the un-fun kind. I’m trying to stay in the moment. I keep telling myself to not let tomorrow poison today. I don’t always take my own advice.
How am I? I’m hanging in there. I have my hands full managing all of our appointments, running two households and working. I came back to Des Moines for one night so I could get my own treatment on Monday. I try to get out for a short walk first thing in the morning and last thing at night to burn off some of the funk that builds up in my mind and body during the day. It helps. I have friends in Osky that I can visit when I want or need to and they help keep the crazy in check. I’m back in Des Moines for a few days to take care of some things piling up and to give all of us a reprieve from each other. As Dad says, I can’t miss you if you don’t go away!
Thanks for reading, thanks for caring. My gratitude for my family, my friends, a good meal and a nice cup of tea continue. Carpe diem.
A few people have asked what they can do to help us. The first thing that comes to mind and seems to be the easiest and most practical for my folks is meals. I have created a Meal Train for the month of October with the potential to add dates going forward. They don’t want help, they don’t think they need help, but I know this would make their lives (and mine!) a bit easier and one less thing to worry about for the short term. It made a huge difference for me in the days after my surgery and I am eternally grateful for those that delivered delicious food to me, amongst all the other help I received.
If you are interested in providing a meal, email me at email@example.com and I will send you the link. Please save the phone calls for now. I appreciate those who have reached out but I’m trying to control and funnel information in a manner that doesn’t overwhelm them. They are normally private people and the concept of anyone doing something like this for for them is quite foreign.
Continued thanks for reading and for your support of me and my family.
Mom had knee replacement Monday, August 24th. The expectation was that she would be in the hospital until Wednesday and then go home. She stayed until Thursday and then PT recommended she go to a skilled care facility due to…a few reasons. She’s quite strong-willed and when you couple that with cognition issues, going home to a very stressful and demanding home life, attempting to manage and care for a paraplegic son and an 84 year old husband with his own health issues is not a good situation. Recipe for disaster, actually. I agreed. Dad agreed.
I scrambled to find a suitable place in under 24 hours. Thank goodness Jana was able to recommend The Life Center and it had an opening. Telling Mom where she was going and why went exactly as you’d probably expect. She was not happy. But, it was for the good of all involved, especially her.
Dad stayed with me while Mom was in the hospital. It was one-on-one time together that is rare for us. I made him tea and breakfast every morning. He read the paper while I worked. We talked over dinner about the things that we scarcely have the chance to. I put the dishes away out of the dishwasher while he was watching the news and realized something was missing. There was an empty space where a wine glass should be. I looked around the kitchen, then in the dining room and even in the living room. Nothing. Was I finally losing my mind? It was no where to be found. When I walked into the bathroom, there it was, on the back of the toilet. Dad had been using it as a mouth rinser-outer when he brushed his teeth. Sounds about right.
Mom and Dad have been married for 55 years and held traditional roles, divided duties. There are many things around the house that only one of them would do and Dad encountered a few of the ones that had never been on his list after he returned home and Mom was away. Such as the washing machine. And the thermostat.
Dad: Sarah, where is Mom’s purse?
Me: I don’t know Dad. Have you checked all of her usual spots, doorknobs, clothes hamper, etc.?
Dad: Sarah, where is the checkbook?
Me: Probably in Mom’s purse.
Two weeks of daily physical and occupational therapy along with speech therapy (works with memory) a couple of times a week was good for Mom even if she didn’t like it. For the first time in a long time, she was not in charge and she was NOT pleased. I tried to ease the transition and usually visited 2 or 3 times a day, bringing her things she asked for and doing her laundry daily. She had a busy schedule and she adapted after a few days but only under the circumstances that after two weeks, she was going HOME.
How a person in a situation such as this likes the food can make a big difference. Most of the time it was OK and she didn’t hesitate to let me know when something wasn’t up to her standards.
Mom: This iced tea is terrible.
Mom: This iced tea is the worst I’ve ever had.
Me: Well, don’t drink it. You have other things to drink.
Mom: I’ve never had such awful iced tea.
Me: *takes saran wrap off the top of the glass and sniffs the contents* That’s because it’s prune juice, Mom.
After a week or so, PT pulled me aside and asked about home again. After painting them a picture of what she deals with on a daily basis and her known memory issues, they recommended that she go to transitional care such as assisted living for an additional 30 days after she left. Oh boy.
I talked with Dad about moving her to assisted living for a short period of time and despite paying the out of pocket cost, we both decided it was well worth it even if Mom hated it.
Dad: Who makes this decision?
Me: We do. At this point we have to decide what’s best for her and if we don’t take her home, she’s not going anywhere.
We needed to give her knee a chance to heal enough that it wouldn’t be critical if she couldn’t remember all of tasks and movements they were teaching her to keep her safe. We needed to keep her in a controlled, non-stressful environment that could help her heal for the time being.
This conversation was even more excrutiating than the last. She insisted she was going HOME. I’ve never seen her in such a state of mind and it was gut-wrenching for Dad and me. But it was decided.
The Friday before Labor Day at 5:00 PM I started my frantic search for an assisted living facility that would suit our needs and hopefully Mom would enjoy. I settled on 3801 Grand and asked them if they could accommodate her for 15 days. I think 30 might have completely pushed Mom over the edge and her knee was doing quite well. Actually, all of her was doing quite well. We kept the stress to a minimum and didn’t involve her in the daily goings-on of home and it seemed that at times, her memory improved.
We moved her into her bright, cheery new short-term digs and she settled in. I kept up my 2-3 times a day visits and she adjusted quite well. They have a very nice facility that suited her; lots of windows, old trees and plenty of activity to watch or participate in. She usually liked the food but really enjoyed the dining room, it’s view and the people she sat with. She had more freedom and could walk outside and loved looking at the buildings and homes near her. She became as calm, peaceful and stress-free as I’d seen her in decades. Her memory was as good as I’d seen it for many years and even some of her old personality that had been shoved in a far corner was re-emerging along with her sense of humor. We spent a lot of time walking, sitting on the patio and just enjoying each other. I am so grateful for those days.
My decision to have her stay 15 days, until September 25th, was not random. Dad had all of his follow up appointments at Mayo on September 24th. We decided that it would be best if just the two of us even though Mom would not be happy. I didn’t bring the appointments up but she remembered a day or two before we left. She grumbled but she accepted that we were going without her.
Dad and I took off after work on the 23rd. It rained as it always seems to on our drives up. We checked into our hotel, unloaded and then headed down to the Co-Op to grab him a bite to eat.
His hip has been bothering him more than normal for the last month or two. He was having some pretty serious pain around his IT band and we were getting desperate. Nobody seemed to be able to do anything for him. Cindy had taken mercy on us and used her massage therapy skills on him to see if she could alleviate some of his distress. And it worked! Not completely but it improved. I tried working on him in the same fashion every time he came up to visit Mom. It seemed to help.
After Dad and I got back to the hotel, checked out the game room, drove some race cars, the air hockey game was still broke, we headed back to our room.
We were both spent. I went in the bathroom to wash my face. The next thing I heard dropped my heart to the floor.
Dad was yelling, gasping in severe pain. I sprinted back to him. He was still sitting on the edge of his bed but in serious distress. In a split second I looked him over but could see nothing that would lead me to the source of his pain.
Me: I’m calling 911.
Dad, crumpled red face: No, it’s my hip.
What? He was in the same place I had left him less than a minute before.
Me: What did you do? What happened?
After giving him a couple of minutes, the pain started to subside and he could talk. He had taken his left shoe off and then put his left foot behind his right to push off his right shoe at the heel. That’s when something in his right hip snapped. I suggested going to the ER but he said he was feeling better. I repeatedly looked him over because I wasn’t trusting his words at this point. He did seem to be relaxing so I was inclined to let him stay with me in the room and see how he felt in the morning. We really needed to get through his urology follow up appointments, we were two months overdue, and we’d arranged many things around making them happen.
The next morning he tried to convince me he was better but I wasn’t completely buying it. He wanted to go down for breakfast on his own but I went down with him.
We made it to the first two appointments without much hassle. There was quite a bit of walking in between and it was slow-going but we managed.
The third appointment was a urogram and chest CT. I waited with him until they called his name and then took off to check out of the hotel when he disappeared with the nurse. I came back an hour later and she was pushing him into the waiting room in a wheelchair.
Me: What happened??
Nurse: He went down in a chair.
Dad: My leg gave out and I just kind of…went down.
Me, looking at Nurse: Now what do I do with him?
Nurse: Blank stare, shoulder shrug.
Me: We need an X-ray, how do we arrange that?
Nurse: Get the doctor he’s here to see to order one or take him to the ER at the other hospital.
I looked at him in the wheelchair. He wasn’t getting up. I got behind him and away we went to beg his urology surgeon to order an immediate X-ray that had nothing to do with his follow up visits.
After a very confusing conversation for the urologist’s nurse, she got it scheduled for right after lunch. I pushed Dad down to the cafeteria, parked him at a wheelchair accessible table and went through the line to get us some food.
We headed to X-ray as soon as we were done and they took him in almost immediately. Getting him prepped…..was a challenge. He was already in discomfort and this was just going to make it worse. His right leg was fairly useless and painful if he tried to move it. I stayed with him the whole time, even when they were taking the X-rays. I was not leaving him again. The tech just threw an apron over me.
We headed up to meet with his urologist after we got him dressed and back in the chair. Nothing was happening fast except me pushing him around once he was settled in the wheelchair.
Emily, one of the urology team members met with us first. She read the X-ray report which was already done. It confirmed a displaced avulsion fracture. I was relieved and concerned at the same time. At least we knew what was wrong. But what do we do about it? I asked Emily to request an ortho consult while were there and she did although they would not squeeze him into their schedule the same day.
Onto the reason we were there. We reviewed the CT with Emily. It showed a new mass that was not there during the last scan and it’s in the same spot the cancerous bladder resided. Sigh.
Dr. Thompson, the head surgeon came in and we walked through the scan with him. He recommended a biopsy to see exactly what we’re dealing with.
Dr. Thompson: Well, you can’t outlive everything.
They couldn’t do the biopsy the same day but they were able to squeeze it into the schedule the next day. Once we were resigned to staying another night, I realized I didn’t know what I was going to do with Dad. He couldn’t walk. He didn’t have crutches. I wasn’t sure how to get him back to the hotel for which I no longer had a reservation. It was 4:50 and the clinic pharmacy closed at 5:00.
Me: Dad, hold on.
We were off and rolling, intent to get to the pharmacy before it closed to get him some crutches. We made it in as they were turning off the lights but managed to buy a pair at the last register open. Now what? I called the hotel and their shuttle could accommodate a wheelchair so we told them to pick us up. Stealing a wheelchair, it is. I rolled him into the room and parked him between the beds and told him he was to stay put. I was concerned about him falling or causing himself pain that I couldn’t alleviate.
The next morning I was also concerned about the biopsy causing him pain due to the precarious spot they would be sampling. Joel, our RN was great; patient, thorough and appreciated our sense of humor. Joel and the two techs let me stay with Dad while they prepped him and we chatted about everything and nothing. They were very careful with him and respected his fragile state.
Me: Dad, they said I could run the saw.
Tech: I don’t think we’re going to need a saw for this.
Me: OK, maybe next time.
When the procedure was complete, I rolled Dad out to a nice sunny spot in front of the building, locked his brakes and took off to retrieve the car. Time was of the essence. I wasn’t sure what to do with Dad, if he should be in a hospital or if he was OK to be out and about with the rest of the world. I had done some research on the type of fracture he had and it sounded like it could go either way. I was hoping to get him back to Des Moines and into his own orthopedic surgeon before his office closed for the weekend. It didn’t happen. We were about 30 minutes past when they would see him. I made Dad a deal that if he wasn’t in pain and he didn’t do anything stupid, I wouldn’t take him to the ER and we’d cross our fingers until the ortho could see him on Tuesday.
After much conversation, we decided to pick up Mom. It was the day she was expected to go home and we decided I would take them both to their house in Oskaloosa and I would stay with them, as I had already planned on doing. I just wasn’t planning on two people gimping around.
Mom felt good on Saturday and completely overdid it. She is still paying for it, more pain than she was prepared to handle. Both of them are on crutches. Neither of them can drive. Sarah’s Assisted Living is now open but already at capacity. Duties include but aren’t limited to cooking, driving, sock and shoe put ‘er on ‘er, drug manager, toenail trimmer, hair cutter, laundry doer, grocery getter, leg massager, walk accomplice and repeated question answer-er.
I’m working from their house and it’s gone OK with the exception of the train that runs daily that is just a few short blocks away. I’m sure the conductor is getting paid by the horn blow. It makes for interesting conference calls.
Their house is the one I grew up in and the only place they’ve lived since I’ve existed. They lived for 10 years across the street before that. The town, the neighborhood feels very small to me; at times weirdly familiar like time has stopped, at times like I’m a stranger in my own land, at times comforting, at times suffocating.
Tuesday we made it to the ortho office, both of my folks on crutches. We get a lot of WTF looks, even in the waiting room. The ortho explained that the tendon on the inside of Dad’s hip pulled off the bone. That spot had deteriorated and snapped apart when Dad put pressure on it. He’s supposed to continue to take it easy, use both crutches and I’m pretty sure he also said not to do anything stupid. I packed them both in the car ever so slowly and we were off.
I knew we’d get biopsy results by Wednesday but I wasn’t in a hurry. I knew it would be a game changer.
Mom, Dad and I were going for a walk around the block when the cell phone in Dad’s shirt pocket rang. I pulled it out and looked at the number calling. Mayo. Sigh. Here we go.
Emily asked if now was a good time to go over results. She confirmed that it was a recurrence, that the mass consisted of the same bladder cancer cells that ruined his bladder and caused him so much pain and overall distress earlier this year. Surgery is not an option. Radiation is not an option. They set up an appointment with medical oncology to review what, if any, options there are for chemotherapy. I thanked her for her time and hung up. We were still a block from home. Our slow little handicapped train made it up the driveway before I shared the news. Dad slumped on his crutches.
We went inside and I attempted to explain what I knew, what would happen in the short term and repeated that nothing was going to be decided tonight.
For now, we’re taking care of the immediate needs, the day-to-day stuff. That’s all we can do. That’s all I can handle, at least for now.
I left on Sunday wearing a tank top and shorts with the air conditioner on in my car since it was 80+ degrees. I decided weeks ago that I wasn’t going to tell anyone when my appointment was and that I would go alone. I wanted the opportunity to digest whatever was unveiled before anyone else knew or expected an update from me. I wanted my own time to process. By the time I reached Rochester 2 hours and 40 minutes later (not a PR but probably top 3), the temperature had dropped 14 degrees. It made for an invigorating stop at the gas station. The next morning the temperature at 5 am was 42 degrees and dropping with a wind chill factor of 32 degrees and 25-30 mph sustained winds. I was going to hoof it the 8 or so blocks down to the Charlton Building but I decided to take the shuttle. Besides it was still dark and I’m afraid of the dark.
My view from the hotel room Sunday night.
I was the only one walking around in the Charlton at 5:30 am looking for Desk One until I surprised a gaggle of electricians loudly debating something obviously very important by the elevators and stunned them into silence. I wandered into Desk One’s empty waiting room and read the sign that says they open at 5:45 and to ring the bell for a technician. It was 5:35. So I rang the bell. I grabbed a sign in sheet, filled it out and sat down. At promptly 5:45, a guy in scrubs and a lab coat wandered out and asked if there was anyone named Sarah Russell here. I looked around at the large, empty room and looked back at him. I guess that’s me.
Joe was a friendly guy, one of two that do this, and quite skilled and efficient at his job. Blood glucose check first, IV second. He had no problem sticking me and I barely had time to wince. He took me to the machine that administers the exact dose, sat me down and hooked me to it. You can see the percentage of the FDG (radioactive glucose) being administered on a graph until it’s done and all of it has transferred into me. He unhooked me and I returned to my industrial, extra wide recliner. I know the drill. It’s dark and you’re quiet for 45-50 minutes. He covered me up with a warm blanket and pulled the thick curtain. It blocked much of the light but I could still hear everything. I was the first patient of 60 today or Number 1 as I kept referring to myself. Sometimes they get up to 80. They run a tight ship.
I could hear the woman next to me who’s in her 70s explaining that she is to have surgery tomorrow and is currently undergoing dialysis. She got sick while waiting for her radioactive tracer to reach the far corners of her insides but the tech explained that it probably wasn’t the cause of the nausea. There was a cheerful 70 something man that had to be told to put his solitaire game away. No stimulation! Then there was a younger voice. I listened carefully for him to repeat his birthday as we all have to do. He’s 24 and had driven down from St. Paul that morning. I assume most people come in for PET scans for only one reason.
After I had given the tracer ample time to marinade inside me and the cancer enough time to greedily eat it up, we walked to the machine that would scan my innards and provide a glimpse of what was going on in there. I took off my belt and emptied my pockets. I laid down and put my hands above my head. I stayed in that position for about 20 minutes as they slowly slid me through and took pictures. Then I got up, gathered my stuff and scrammed. It was 7:15. I had hours to wait for my afternoon appointments with my medical oncologists and orthopedic surgical oncologists.
I returned to the Gonda Building a good hour early for my first afternoon appointment because I had to check out of the hotel. I always eyeball the people I encounter and try to diagnose their maladies. Some people look normal. Some look quite ill in a variety of ways. I made my way to my old stomping grounds on the 10th floor and got comfortable near the windows. The waiting room was full, bustling. It’s an interesting cross section of the human race. The big guy in the leather coat with a full head of flowing, curly white hair and a sucker in his mouth. The parents there with their children. The adult children there with their parents. A few being pushed in wheelchairs. A few with hats or wigs. A few proudly f-you bald. A few that are obviously new here and quite uncomfortable. A construction worker that had come straight from work, still wearing his dusty clothes and a terrified expression. We all have a common denominator. The ethnic diversity is also more interesting than you’d normally find in rural Minnesota. Some look like they drove in from the farm down the road, others like they flew in from the other side of the earth.
I sit. I wait. I study. I stand, walk and try to unhinge my stiff hip. I watch the window washers on the building across the street. I understand that a critical part of my immediate future is about to be revealed. But I don’t think about it. I know I can’t change what the scan shows, at least not in this moment. I have a list of questions to talk about with both sets of doctors. I am not nervous or anxious. I am quite calm and have been for a week or so. Once my dad was through surgery and safely home, I turned a bit of my attention back to myself. I know the chances of the drug I’m on working indefinitely is about the same as winning the lottery. I know that current conventional therapies do not hold a cure for me. I’ve been exploring a Plan B and I’ve started to bring it into focus in the last few weeks. More to come regarding that. In the meantime, I’m peaceful.
We get right to the point with my first appointment and pull up the PET scan. “It looks good.” I got off the couch next to the desk and crouched next to the doctor so I could have a clear view. My initial glance saw nothing lighting up that shouldn’t. We pulled up the written report to see if the radiologist agreed.
Continued positive response to treatment. No obvious new metastatic disease. The numerous sclerotic lesions throughout the skeleton demonstrate no significant FDG uptake.
I decided to spruce up the scan because I’m fancy like that.
I was not surprised and again, not relieved. I just felt the same. This is excellent news and the best report I could get but I think my intuition was already tuned into it before I saw the results. I still have incurable cancer. That has not changed. We discussed my questions and then got the to fun part, the exam. They like to run their hands and eyes all over me and I’m used to it. I told them that the last time I went to the dentist, I started to unbutton my shirt because for a split second, I forgot which doctor I was visiting. Habit, I guess.
The medical oncologists left and sent in the orthopedic surgical oncologists. The first one reminded me of a Samoan Superman impeccably dressed in an expensive, well-tailored suit. We discussed the basics, the inflammation around my hip and then in came Dr. Sim, the big cheese, and a visiting doctor from Japan. We looked at my PET again and then the Japanese doctor provided a guess at my diagnosis from the initial x-ray taken in July. He got it right. Then he giggled and bowed. They said he always gets it right, even the most puzzling of puzzles. Dr. Sim continues to be pleased with me and the results. I asked him if there was anything I shouldn’t be doing and he told me not to jump out of the back of any pick up trucks. Maybe he knows me better than I think!
Another exam and discussion of the continued pain in my hip. They diagnosed me with troch bursitis and we all agreed to a steroid injection. I’ve been enduring pain in my hip when I engage a certain range of motion but waiting to see if it subsided. It hasn’t and my compensation for it is increasing.
Dr. Sim: Dr. A, do you want to inject Sarah?
Dr. A, aka Dr. Superman: Oh, yes I do.
I got dressed and went up to the 14th floor, got some fast x-rays and then they prepared me for the injection. I laid on my left side and the nurse put one hand on my right shoulder and grabbed my left hand with the other. That’s weird. Is she trying to comfort me or hold me down? I found out when the large gauge needle made it into the bursa which felt like someone sticking a blow torch into a bundle of raw nerves. My leg started to spasm and she tightened her grip. “Holy shit!” I said as I laughed which caused my leg to shake even more. And then it was over. “Well, we’ve never had anyone laugh when we injected them.” The nurse said after 4 hours it would start to hurt. Um, it hurts right now. It was painful enough that I couldn’t hide a limp. I gimped all the way back to the hotel thinking it would work out the pain but it didn’t. Even today, it’s sore and I’m still limping. I’m not sure what to expect but fingers crossed it improves. It will get a true test drive when I push the mower later today.
I was in bed 45 minutes after arriving home last night. I was cooked. For the next 6 months, I’ll focus on being healthy and happy and taking care of my parents. Next up, Mom’s appointment with the orthopedic surgeon this afternoon. Never a dull moment!
Driving home. Not a PR. Too much road construction.
Their high-tech pain scale. I guess number 10’s helmet is too tight. Also, I think I’m funny.
A few of the people that heard Troy was making ribs on Saturday.
Out with my O-Town ladies on Friday.
Thanks for reading. Thanks for caring. Thanks for laughing with me and at times, at me. My gratitude continues.