Follow-up on Foster the Cat

One question I get asked pretty often by people who've read my family's story is this: What ever happened to Foster the cat?  

As I've mentioned, my mom is not a big fan of felines.  We had various pet cats while I was growing up and my parents had a cat named Sport who had passed away a year or so before my dad got sick, but Dad was always more the cat person between the two of them.  

I think I can speak for my mom when I say that there were no regrets about having gotten a cat for my dad after he got out of rehab; his Bucket List had been revised in such a drastic way when he got sick, and there weren't a lot of things on his list during that time that he could do because of the impairments that came from the tumor and because of the treatment he was undergoing.  Getting him a kitten was one of the few requests we could fulfill for him, and we were happy that his wish was able to be granted.  

Dad loved having Foster; in fact, he said that getting Foster was the "second best thing" that had happened to him since he'd gotten sick. ("The first best is having my kids and my grandkids around more," he said.)  He and Foster napped together and hung out together, and, when they weren't doing that, Dad enjoyed watching Foster play.

Unfortunately, though, Dad didn't get better with the treatments; in fact, he got worse, and he was only around for about six weeks after Foster joined the family.  

Mom didn't want a cat.  She had two greyhounds, one of whom was elderly and in poor health, and Foster tormented both of them.  He constantly tried to escape whenever an exterior door to the house was opened, and Mom didn't want to have to worry about him getting lost or hurt outside.  With Dad not around to take pleasure in Foster anymore, we agreed we needed to find a new home for the cat.

But this wasn't just any cat - it was Dad's cat - and, other than Dad's car, it was the first time we had to make a decision of what to do something of his - something he had loved, even if just for a short time.  Something he should still be around to love.  Ouch.

So we didn't want to let just anybody have him; ideally, we wanted him to go to a home with children to play with and to a family that would report back to us periodically about how he was doing.  I felt like it would be like losing a part of Dad if we lost track of Foster, and all of us were already battling against such sadness that I didn't want one more loss to add to the mix.

A couple of my parents' friends offered to take Foster when they heard about our situation, but neither had children and we thought Foster would be happier if he had some kids to play with.  Both of my sisters and I considered taking him, but all three of us already had two cats each and we weren't sure the younger, more energetic Foster would fit in.  

Taking a cat nap in a gift basket

Six weeks after my dad went on ahead, my siblings and I and our spouses and children all gathered again at my parents' house; because my dad had expressed his desire to be cremated and the cremation couldn't be completed before some of the family needed to leave town the month before, we had planned the memorial celebration for a few days after his death and the burial several weeks later so we could all make it back for the service.

That weekend, we talked about what would be best for Foster, and, to our delight, my brother and his wife offered to take him back with them and their two children when they returned a few days later to Philadelphia.  It seemed like the perfect solution; they already had one cat but thought she and Foster would work out any differences in time as needed.  

We were apprehensive about how Foster would behave on the plane ride, but they reported that he did fine. (Don't tell the airline, but he even got to get out of the carrier and sit in my niece's lap for awhile on the flight!)  

Since then, he has adjusted to living with them, and he and their first cat Greta have called a truce.  I know my dad would be glad that his cat has such a great life, playing with my niece and my nephew and going inside and outside as often as he wants, and we are grateful that he ended up in such a good place and that we get to hear funny Foster stories so often.  

At home with my niece, who is showing
him a photo of my parents

Part 43 –At Last

Continued from Part 42 

I wish I could draw, because if I could, I would draw two pictures side-by-side, one that shows how I pictured things going as we prepared and then got to bring Dad home from the hospital, and the other that shows how things actually went. 

On Dad’s last night in the hospital, his mood fluctuated between excitement about getting to go home the next morning and distress that he couldn’t leave even sooner. “My ride [the ambulance] cannot get here soon enough!” he said impatiently several times.  My sister Nancy and her husband David stayed with him during the first half of the night; per Dad’s request, David shaved Dad’s face, and Dad and Nancy talked about what Dad was going to wear home the next morning.  “I guess I’ll wear flannel pj’s and running shoes for the ride home,” Dad announced.

Dad put in a special “last dinner in the hospital” request with David, who kindly went and picked up a to-go order from Steak ‘n Shake.  Dad ate half of his order of Three-way Chili, took a break, and then proceeded to gobble down some pretzels, half of a Snickers bar, and an entire Cliff bar, and, of course, washed it all down with Diet Coke. 

By midnight, my sister Jennifer and I had tagged-in for the late-night shift with Dad.  He was getting super-antsy; he requested and was given a sleeping pill and later another pill for anxiety, but nothing seemed to calm him.  He directed Jennifer and me to “get real close,” and so we each pulled a hospital-grade recliner up next to one side of his bed and put the bed rails down so we could hold his hands and talk to him while he tried to go to sleep.  After an hour of so of more fretting (“You PROMISE I’m going home FOR SURE tomorrow, right?” he asked us repeatedly), he dozed for about an hour but woke up again around 3 a.m. saying, “It’s just too much!  I hurt all over!”  After watching us try for quite some time to get him settled again, Nurse Jim gave Dad a pain shot, which knocked him out for a few hours.  

While Dad slept, Jennifer and I talked to Jim again about how worried we were that we wouldn’t be able to take good enough care of Dad at home.  Jim was very reassuring and, as an added bonus, packed some “to go” supplies for us to take home.  He sang the praises of hospice care and of the support they had to offer.  Finally, we looked through the window of the hospital room and saw the sun coming up over the horizon; at last, it was Going Home Day!

About 8:00 that morning, Mom and Nancy took over at the hospital, and Jennifer and I drove to Mom and Dad's house to coordinate the preparations there.  Dad continued sleeping for about another hour; when he woke up, he remembered right away what was planned for the day.  He was still very anxious, though, and still in pain.  By 10:00, he started experiencing some shortness of breath.  “When is that ambulance going to get here?  Why can't they hurry up?” he asked over and over, first eagerly, then angrily, and then desperately and in a panic.  When Nurse Dave noticed Dad’s heart rate climbing and saw the anguished look in his eyes, he gave Dad a pill for anxiety and a shot for pain.  At last, Dad relaxed, and then he fell into such a tranquilized sleep that he did not wake up even as the paramedics transferred him from the hospital bed onto the gurney and then into the ambulance, as they sped down the highway, or as they wheeled the gurney into the house.

Meanwhile, at my parents’ house, my husband Kevin and my brother-in-law David were hastily rearranging furniture while Jennifer and I directed the set up of the newly delivered hospital bed.  Kevin and my daughters went on a mad dash to the store to buy extra sheets and pillows which we quickly threw into the laundry; we wanted to be prepared for bed-linen changes, and we knew the pillows would be needed for positioning Dad in the bed.

We had decided the day before that the hospital bed would be set up in the den; we thought Dad would enjoy being “in the mix” and that he would really like watching his flat-screen TV right by the fireplace and the space heater that was set up in that room.  Our husbands switched out the curtains so that heavier ones were hung in the den to block out early-morning sunlight (ambitiously – or maybe crazily – we still held out hope that Dad would be able to sleep despite the track record since he'd gotten sick).  The guys brought a couch from upstairs to add to the couch in the den so that two people could easily sleep in the room with Dad at night.  It was a mishmash of furniture and equipment, but it was as we felt it needed to be so that we could accommodate Dad’s needs at home.

A Hoyer lift

The medical equipment guy also brought a pressure-relief mattress and a Hoyer lift, which is a specialized device that uses a sling and hydraulic power to gently and safely transfer a person whose mobility and strength are compromised from one place to another.  I was familiar with patient lifts from my hospital/nursing home days of employment in the past, but it had been years since I’d operated one and even then it had been more of an industrial grade model.  Jennifer asked the rep to instruct us and then to watch us use the lift to be sure we wouldn’t risk injury to Dad when we used it to lift him.   Jennifer played the role of the “patient,” and Kevin, David, and I practiced using the lift until we felt confident.  We hurriedly put sheets and blankets on the bed, and then we waited.  (We had his favorite Dodgers blanket and his Glee pillow all set to go!)  Oddly, along with Jennifer, David, my husband, my daughters, and me, and alongside all of that medical equipment and awkwardly arranged furniture in the house, it felt like there was Hope, something positive in the room with us.  And at last, I, who had had tears streaming pretty much non-stop for several days, was able to stop crying.

When Dad’s “ride” arrived at the hospital as scheduled about 11:00 that morning, he was still knocked out from the sedative.  There were no big goodbyes with the staff, there was no cheering by Dad or by anyone else, there was no Going Home outfit of flannel pj’s and running shoes for Dad; everyone was all business and efficiency.  Had he been awake, I’m not sure if Dad would have high-fived everyone at the nurses’ station and in the hallway on his way outside or cried tears of joy and relief – maybe both.  Regardless, though, it was a smooth ride home, something that was well deserved and perhaps even long overdue.

When the ambulance quietly pulled up into my parents’ driveway around noon that day, we were as prepared as we could be inside the house.  The fireplace was “on” (as Dad said about the gas logs), there was Diet Coke and Foster’s chilling in the fridge, and the pets were quarantined in a bedroom to keep them from being underfoot during the transfer process.

I had envisioned Dad, exuberantly smiling and laughing as he entered his house that day, but the scene unfolded much differently.  Dad slept as the paramedics rolled him in on the gurney through the garage and into the den and as they smoothly shifted his sheet-covered body into the hospital bed.  He slept as they simultaneously raised the rails on each side of the bed, checked his vital signs once more, and quietly exited out the back door.  He slept while the dogs and his cat Foster came back into the room and took their places on the pet-beds by the fireplace.  In fact, he continued to sleep for several more hours. Not quite the homecoming I had predicted, but at least it went smoothly and at least, at last, Dad was home.

While he slept, we unpacked, did more laundry, and watched over him.  I got out my laptop and searched the Internet for modified clothing that I thought would make it easier for his clothes to be changed when needed.  I kept picturing him sitting up in his recliner, wearing sweatpants and a running t-shirt, but I wasn’t sure how it would work for him to be dressed like that because of his catheter and the PICC-line in his arm.  I bookmarked a website that sold what they referred to as “easy access clothing,” but the clothes they offered were not what I would call stylish – and for some reason (habit, denial, hope?), I still thought that mattered.  Finally, I wrote “ask about clothes” on the To Ask Hospice Nurse List in the Notebook; We have to figure out something about what he will wear, I thought.  He won't want to keep wearing a hospital gown, and surely the Hospice nurse will have a resource for what we are looking for apparel-wise.

Not long after that, the medications ordered through Hospice were delivered to our door – no having to get out in the cold again, no waiting in line in Walgreen’s, no insurance co-pays!  My brother-in-law Peter inventoried and organized the pills and recorded the name and the dosage of each in the Notebook.  A little while later, Linda, the intake nurse from the Hospice service, arrived.  As our husbands and my daughters stood guard over the still-sleeping Dad in the den, my mom, my sisters, and I sat down with Linda at the dining room table for an exchange of information.  She asked questions, she told us more about Hospice, and she assured us that we would have the support we needed to care for Dad.  We asked questions (shocker, right?), we told her about Dad and our story, and we showed her the Notebook, including the chart we had been using to keep up with his medications before he had gone to the hospital.  Linda looked at our lists and our charts, and with the utmost compassion in her eyes, she told us that we had done a good job keeping up with everything.  “Hospice is here now to do most of the ‘figuring out’ for you, though,” she said tenderly.


“We’re just so worried, and we want to make sure we do everything right for him,” I told her.  She told us that, above all, Hospice would focus on symptom-relief and comfort, and she pointed to a little box that had been included in the delivery from the pharmacy.  “That’s the Crisis Kit,” she said. “It will be here just in case.”


“In case what?” my sister asked her.


“In case he gets into distress for any reason – if he has trouble swallowing or breathing or if we need extra help controlling his pain,”  she said.  She must have seen the panic start to creep onto our faces, because she quickly added, “If you have any concerns or notice any changes in him at any time during the day or night, you should just call the Hospice nurse on duty and she will come right over.  She may even instruct you over the phone about giving him medicine in the Crisis Kit or in the prescription medications he has.  Don’t worry, though, you won’t have to decide any of it on your own.  We will take the reins, so to speak.” 

We asked her about the two things on the medical care list that made us the most nervous:  flushing the PICC-line (to keep it open in case it needed to be used for medication administration at a later time) and dealing with Dad’s blood sugar issues.  To the first concern, she said that an RN from Hospice would come by at least once a day and could do the procedure, instead of by us.  She opened the blood sugar testing kit and showed us the lancets and the glucose testing meter.  She explained how we were to insert a lancet and a glucose test strip into the testing meter, push a button to release the lancet into his finger, and then wait until we saw the blood sugar reading appear on the digital screen.  “Do you want to try it on him while I am here?” she asked.  “It’s not time to do it yet but we can just do it for practice if it will make you feel better.”


“Just do it on me!” Jennifer volunteered.


“Seriously?” Linda said.

“I’d rather have it practiced on me than on Dad,” Jennifer responded, and so Nancy set up the meter and checked Jennifer’s blood sugar (a perfect 100!).  We were good to go on that.


I told Linda about my quest for suitable clothing options for Dad, and she said that, while we were of course free to purchase custom-made clothing, many of her patients who didn't just wear hospital gowns wore "street clothes" or pajamas that had been cut down the sides or up the back to make it easier for those items to be put on and taken off.  Easy enough, I thought.

Linda said that she needed to look in on Dad as part of her initial assessment.  I told her that we did not want to tell him that we had called Hospice.  She said that she had had that request before and that her “rule” was that she would take off her name tag which prominently identified her as being from a hospice service and that she wouldn’t bring up the subject with Dad but that if he asked her if she was from Hospice she wouldn’t lie to him.  Fair enough, I thought, and we lead her into the den to see him.  She gently and efficiently checked his vital signs and then went back into the dining room to record the information in her notes.  She hugged my mom, my sisters, and me and told us that another RN would be coming in the morning and that she or the other nurse would be available by phone if we had any questions or concerns.  We felt better; we felt like there was a plan and a back-up plan in place.  We felt like we could handle things, at least until the next day, and, as it had been, our strategy was to take things one day at a time.

As the sun was setting and the room was starting to get dark enough for us to need to turn a couple of lamps on, Dad opened his eyes and looked around.  “At last, he is awake!” I thought.  I waited for him to break into a big smile and say that he was so happy to finally be back at home.  Instead, though, he said in a desperate, gravely-sounding voice, “But you promised me I was going home!”  

“You are home, Dad!” I told him.  But he wasn’t convinced.  We told him he was in his den and we pointed out the things around him.  The more he looked around the room, though, the more disoriented and upset he became.  Finally, my sister picked up Foster and put him in the bed with Dad.  Foster curled up right next to Dad and purred loudly, as Dad petted him and dozed off again.

Up Next – Part 44 – Hospice, Part 2

Part 42 – Gearing Up

Continued from Part 41 

When I think back to the last few days of Dad’s hospitalization, I remember so clearly some of what was going on, but other things are a blur or even a blank. I remember sitting by myself in the hospital cafeteria with a turkey sandwich in front of me, but I don’t remember how I got there or how the food got onto my tray.  I remember the tears that I could not stop from falling in a steady stream and both wanting and not wanting to be comforted.  I remember taking a bite of the sandwich and thinking that it tasted like cardboard but eating it anyway, because, like a lot of things going on during that time, it was something that I knew I had to do.  I remember thinking to myself, “You have GOT to hold it together” but not being at all sure that I could.  I remember feeling so desperate and so heavy with the weight of the decisions that my mom, my sisters, and I had to make.  I knew there were things that had been done that couldn’t be undone, and I knew there were actions that had to be taken to make things right for Dad.  I knew that I still wanted to choose Hope, but I realized that, from that time forward, Hope was going to be coming in a different form.

We had another couple of lucky draws from the Nursing Assignment Fairy; Dad’s tag-team nurses this time, Day Shift Dave and Night Shift Jim, were very patient in teaching us about Dad’s medical needs.  Both of them somehow balanced empathetically caring for Dad with providing us with a listening ear and a shoulder to cry on in the hallway.  They seemed to be available whenever we needed them, but we didn’t feel like they were hovering or intruding.  Looking back, I see that, whether it was because they saw up close how very sick Dad was or because they took the time to listen to him and to us, they somehow “got” the seriousness of Dad’s condition and even the rhythm of his illness and of our grief.  

Even with support from Nurses Jim and Dave, though, we continued to scramble to try to meet Dad’s needs, often apparently without success. "It's just too much!” Dad said numerous times, with despair in his voice and with pain in his eyes.  “Please, can’t I just go home?" he pleaded again and again.  It was, in a word, heartbreaking.

The doctors, especially Dad’s oncologist, still appeared to fluctuate between being baffled by the severity of Dad’s continuing medical problems and being blind to it.  Among the team of physicians involved in Dad’s care, no one seemed to really understand his declining status -- they said the tumor was "holding steady" and that his blood counts were “back to normal.”  For whatever reason, not a single one of them really saw Dad struggling to lift his head from the pillow or really heard him when he said, “I hurt so bad!” or “I just want to go home!” 

There is such a dichotomy when someone you love is catastrophically ill; on one hand, you want the medical staff to realize how unique and special your loved one is, but, then again, you also want them to swoop in with the attitude of “This is no big deal - I see this stuff every day!”  Either way, though, you expect them to accurately and efficiently assess what is going on and then to figure out what to do about it.  This absolutely did not occur among the physicians on Dad’s case.  Either they didn’t really see what was happening or they saw it but they didn’t know what to do about it.  By the third day after Dad had been moved from the ICU onto a “regular” floor, we had begun to see that we were going to have to figure things out on our own, and that is a horrible feeling, entering unchartered territory, in a state of shock, without a guide.

Despite the lack of progress in Dad’s condition, the oncologist was gearing up to send us home before New Year’s Day rolled around.  He was all set to take another three-day long weekend starting that Friday, and so on Wednesday he wrote orders for the nursing staff to show us how to check Dad’s blood sugar, how to administer the insulin, and how to flush the PICC-line so that it would remain open for use if needed.  He told us that he had discussed Dad’s case with the neuro-oncologists at Duke and with the local radiation oncologist and that they felt the best plan was to have Dad start radiation and resume the chemo and Avastin one week after he had been discharged from the hospital.  He suggested that we consider having Dad moved to an inpatient rehab facility “for building strength prior to the start of radiation.”  He informed us that Dad would need “to be able to move himself onto the treatment table and to maintain a seated position for several minutes at a time in order to sit for the radiation treatments.”  (That, to me, was like someone telling me to run a five-minute mile; of course I wished I could do it, but, even giving it my all, it just wasn’t going to happen.)  When I expressed my concerns about Dad’s ability to withstand the radiation treatment, both in sitting for the treatment and in avoiding the possible side-effects such as a lowered immune system, the doctor’s response was, “Because he’s had a less than ideal response to the primary treatment, it’s a bit of a long shot that he will qualify for radiation and even more of one that the treatment will help, but I still don’t think it’s a crazy option.”  I asked him if the radiation could result in a functional improvement for Dad, and he said, “We just don’t know.  If the radiation is able to shrink the tumor, there is a small chance that things will improve for awhile.”  None of this was sitting right with me; I felt like not only were we being offered less-than-desirable choices but we were also being told that the odds were slim that any of the things being discussed would help Dad much if at all, if he even qualified to get any of them.  


When the oncologist left Dad’s room, I followed; I caught up with him at the nurses’ station and told him that we were worried about how we would care for Dad at home but that we wanted to take him home.  

“I just don’t see rehab as an option for him right now,” I said.  And then I pushed even further.  “I asked you when you first came on as Dad’s oncologist if you would let us know when the time came for us to call in Hospice.  Do you think that time is now?”  

He looked puzzled, but I kept at it:  “Other than a slight decrease in pain and his fever going down, there really haven’t been any changes in him since we got here over a week ago.  He’s completely dependent on us for everything, he’s miserable, and he wants to go home.”

“I’m not sure,” the oncologist said.

“What would you do if this were your dad?” I asked him.

“I know exactly what I would do,” he responded. “I have medical power of attorney for my dad [who is also an oncologist], and he has told me in no uncertain terms that if he is ever diagnosed with an aggressive cancer, he does not want treatment; he does not want measures to be taken that will prolong things.”

Wow, I thought.  “And so, about hospice?” I persevered.

“I think maybe there may still be some options we should consider.  He could stay in the hospital through the weekend if needed.  Let’s talk again in the morning.”

I said ok, but it wasn’t.  I didn’t understand how he didn’t understand what I was saying or how he didn’t see what seemed so evident.  How could he think that staying in the hospital “through the weekend” would make a difference for Dad, except to depress and frustrate him more?  And how could he have been so quick to give an answer as to what he would decide to do for his own father and not be of the same mind for my dad at this point?  I was baffled and so, so sad; I just didn’t get why he didn’t get it.

After he left the unit, I stood in the hallway outside of Dad’s room crying, and Nurse Dave came over and put his hand on my shoulder.  He said he had heard my conversation with the oncologist.  “He doesn’t see what we see,” he said.  “I know!” I wailed.  “Sometimes that is the case with oncologists,” he said gently. “It’s like their only goal is a cure, and sometimes that just isn’t going to happen.  Sometimes treatment doesn’t work.  Sometimes treatment isn’t what a patient really needs or wants.  Sometimes the oncologists don’t know when to say when.” He paused, and then he added, “You can ask for more information on Hospice without making any kind of commitment.”   As my sobbing subsided, I considered his words carefully.  I knew we needed help and more information before making any kind of decision.  I knew we had to figure something out and that we needed to do it quickly. 

That night, we made a list in the Notebook of possible options, including having him go to rehab again.  (Based on my professional experience, I knew this was not really an option for a patient in such a severely depleted physical condition; based on my personal experience from when Dad was in rehab in November and made NO progress whatsoever, I knew it wasn’t an option we were even going to consider, but, because the doctors said they thought we should think about it, I put it on the list.)  Checking him into an inpatient hospice facility went on the list, as did taking him home with home health or with support from hospice.  Those were the options, as we saw them; none of them were good, and it was quite possible that none of them were even doable if the stars didn’t line up just right and if we didn’t get our ducks in a row first.  For a split second, it seemed like there were gray areas in our what-to-do, some sorting through of the pros and cons that needed to be done for each of the considerations.  But then again, looking at Dad, lying there in the bed, it quickly became abundantly clear:  what we wanted for Dad – what he wanted – was right there in the forefront of our minds, and that was for him to get to go home.  

We were very concerned about our ability to provide the quality of care that he would need in that setting, but we wanted to try to figure it out.  As had been the case during Dad’s treatment, we planned to operate as a team, and, also as we had been doing, we would take each hurdle as it came.  Our focus became finding out what we needed to know and getting set up to care for him at home; we were gearing up both physically and emotionally for what we couldn’t deny lied ahead.

And so the question became - How can we get him home and take care of him?  Looking at our list in the Notebook, the only way we could see it happening was with ongoing support from an outside source, and the only form in which that seemed to be available to us was through hospice.  At first, the decision to go with Hospice seemed like surrendering, but, as we met with representatives from different agencies and learned more about the process and the services, it started feeling more like taking control of the situation for the first time since Dad’s diagnosis. We told ourselves that we were just going to “use” Hospice … and then we could revoke, if things improved as we hoped they would.  The home environment will be therapeutic for Dad, I thought, and then he will start feeling better.  

Early the next morning, my sister and I caught the oncologist in the hallway before he went into Dad’s room.  Before we could even say anything to him, though, he said, “I thought about your dad all night last night, and I realized that what you said yesterday about calling Hospice is the right decision.  I want to talk to your mom and your other sister too, and then, if you all are ready to go ahead, I can write the order for a consultation from different hospice services, and then you can make a decision.”  We stepped inside Dad’s hospital room and saw that, thanks to the pain shot he had gotten an hour before, he was medicated into a sound sleep.  We all sat down around him, and, after further discussion, we said yes, we would like the orders to be written.  The oncologist looked at Mom and said, “I just want to be clear on this: are you ready to sign a DNR [do not resuscitate] order?  That will be required in order to get hospice services.”  No, of course we weren’t “ready,” I thought, but it is what needs to be done.  Mom took a deep breath and said she would sign the order. The way we saw it, Dad deserved to go home, he deserved to feel better, and he deserved a chance to enjoy his family, and if that meant using hospice, or signing a DNR order, or doing anything else, then that’s what we would do.

After the oncologist left, my sister and I talked to Nurse Dave about hospice.  We had seen a flyer for one hospice provider in the waiting room (not the most uplifting thing to see in an oncology-ward waiting room, I must say, but we ended up being glad to have the info), and we were familiar with two other providers in the area – one was the agency already providing hospice care for my dad’s mom, and the other had helped care for my mom’s mom in the end stages of her battle with cancer almost 18 years before.  Dave suggested that we make an appointment with a representative from all three agencies to learn about each one.  “I think you should sit each of the reps down and ask them specifically, ‘What makes your agency the best choice for us?’”  

We took his advice to heart, and we did just what he had suggested.  The intake nurse from the first company gave us lots of information and then, when we asked her the “Dave” question, she said, “We are the only hospice service that has 24-hour crisis care, which is in-home nursing support for critical cases.”  After that, we interviewed the other two agencies, but we knew as soon as those words were spoken that the first company was the one we needed.  

When the oncologist came by that afternoon for his evening rounds, we told him which hospice service we were planning to use.  He said that he had heard excellent reviews about their services and that he would work with their physician to be sure we had whatever we needed to take care of Dad at home.  “I am going off duty for the next three days for the holiday weekend,” he said, “but I will call you at home on Monday to check in.”  He had tears in his eyes, and he seemed genuinely concerned as he turned to leave the room, but, as we came to find out, that would turn out to be the last time any of us saw or heard anything from him, ever.  

And so we met again with the intake nurse from hospice and, with her help, hammered out the details of setting up a delivery to my parents’ house of equipment and supplies first thing in the morning, and then she made an appointment to have Dad transported home by ambulance.  The next morning, my sister Jennifer and I would be at the house to get things set up there, my mom would ride in the ambulance with Dad, and my sister Nancy would drive Mom's car while following the ambulance.  Along with all the necessary medications and medical supplies, we would be getting a hospital bed with a special pressure-relief mattress and a Hoyer lift which could be used to gently lift Dad to move him as needed.  At last, we felt like we had the help that we needed, and the wheels were set in motion.

It felt buoyant to tell Dad that he was definitely going to get to go home.  As soon as the words were out of my mouth, though, he started trying to sit up in his bed as if he thought he needed to get ready to go right that second.  “It will be tomorrow, Dad,” I told him.  “We have to get everything ready first.”


“What’s to get ready?  I can just get in the car and go, and all of my stuff is already at home,” he responded hopefully.  I told him we had to be sure we had the medicine that he needed and that the doctor had said he had to stay in the hospital until the next morning, and he finally accepted that in a deflated kind of way.  He was ready to make big plans, though:  “As soon as I get home, I want to turn on the fire in the fireplace and the space heater so I can finally be warm.  I need to stretch my legs and then I’m going to play with Foster and the dogs and drink a beer, okay?” he said. 


With that, I smiled for the first time in a long time.  “Okay, Dad, that sounds like a great plan,” I told him.

In what came to mirror the way I desperately wanted to shield Dad from the knowledge that he had cancer around the time of his surgery, I pulled out all the stops to avoid having him know that we were signing on with hospice. This seems incredibly short-sighted now, but at the time I wanted the focus to be on living, not dying, even then.  When I talked to Nurse Jim about my plan, he let me tape a sign to the outside of the door to Dad’s room that said, “DO NOT MENTION HOSPICE! PATIENT KNOWS HE IS GOING HOME TOMORROW BUT IS NOT AWARE OF HOSPICE SERVICES.”  We wrote in the Notebook the wording we thought was better for him to hear, if and when the topic of Hospice came up:  This allows us to care for you at home.  We’re going to take care of you. You did a good job and now you get to go home.  And the clencher – You don’t have to worry anymore; you are going home.

To Be Continued Here:  Part 43 - Home At Last

Part 27 – A Few Good Days

Continued from Part 26

One of my fears between the time that Dad got his second round of chemo/Avastin and the time that he was scheduled to get the next dose was about his quality of life; I wanted to try to make sure that Dad and the rest of us were at least trying to stop and smell the roses.  In the short-term, Dad’s days were filled with fatigue, effort, scheduling, medications, and wishful thinking (hope?); however, I had a longer-term vision for him.  I realized on some level – although, truth be told, not in the front of my walk-away-from-this-thing-unscathed thinking – that we may only have a couple of years left with Dad.  In short, I knew in my heart that the days were long but the time as a whole would be short, and so we needed to appreciate all of the minutes, each and every day that we had with him, and we needed to try to help him find some purpose and some joy in the days ahead as part of loving him through it.

It was during this time that we started talking about goals for Dad outside of therapy goals, and soon we came up with the idea that a day could qualify to be considered A GOOD DAY if Dad could do at least one thing he needed to do and one he wanted to do each day.  Things he needed to do were activities like eating a decent meal instead of the snacking he tended to do and doing some type of exercise and/or participating in therapy sessions.  What we wanted more of for Dad was fulfillment. The hard part about that was figuring out what he wanted to do that he was still able to do at that point.  We focused on small things - not necessarily things on his Revised Bucket List, because we thought he still had time to get better and then to reach for those stars on down the road – but everyday pleasures and little bites of satisfaction.  Dad participated in the planning and even came up with some ideas of things in which he felt he would find some enjoyment.

Dad swimming, before his diagnosis

One of these things was to swim in a pool.  Dad said that he wanted to get into a pool to see if he could still swim, a self-prescribed litmus test. “I promise I won’t try to swim laps,” he said very seriously, and he added that he was sure he’d be safe in the water if my brother-in-law and I took him “because one of you is a great swimmer and the other knows CPR, just in case.”  He even went so far as to say that he wanted an outing to an indoor pool for a Christmas present.  Thinking I could tie Dad’s quest for water time in with his distaste for the mundane Physical Therapy sessions, I called around looking for a therapy clinic with a pool, but I was told time and time again that Dad didn’t qualify due to ambulation limits and the possibility of seizures.  So we put swimming on his wish list and planned to take him on our own when the extended family was in town around Christmastime.  

Dad also expressed interest in going to a Grizzlies game.  “I’ve never in my life been to an NBA game,” he said.  Worrier that I am, I was very concerned about his ability to tolerate the noise level at the game and about issues of accessibility, but we figured we’d work out the details later and went ahead and bought tickets so that we could take him to a game right after Christmas.

Foster, showcasing for Dad by the fire

For Dad, some days, A Good Day ‘s “want-to-do” item was just spending time with his cat Foster, who provided a good balance of frolicking and snuggling.  Thinking that perhaps Dad needed to find a new hobby to replace those that he was now unable to do, I suggested that he could start an online coaching program for novice runners, but he said, “I’m pretty sure someone’s already done that” and that was the end of that idea.  His counter-offer was that he could take up photography, and we agreed to think about that in the spring.  I remember thinking to myself that I couldn’t imagine Dad doing something artsy like that but then thinking that I also hadn’t envisioned him struggling to get through a 10 minute “easy level” ride on a recumbent bike before all of this either.

Other “Good Day” goals included a trip to the bookstore and going to see a movie, and we even went a little further out on the limb by discussing taking a hot air balloon ride as soon as the weather warmed up.

In a few cases, the "want-do-to" and the "need-to-do" intersected, such as taking Dad to get a pedicure at the nail salon near my parents' house.  I should preface this by saying that, as a long-time long-distance runner, Dad's toenails were not what could be referred to as "normal."  For as long as I can remember, they'd been discolored, misshapen, and sometimes (as any runners reading this will appreciate) even missing, from the pounding they took over the years within his running shoes.  As part of trying to take care of him around the time of his surgery, Mom had taken on the mission of trying to "spruce up" Dad's feet; however, the obstacle to this was that his feet were very sensitive and he was especially protective of his toes.  (Dad NEVER went barefooted; he was always concerned that he would step on something sharp or otherwise injure his feet and thus thwart his running program.)  After rehab, we came up with the idea of taking Dad to get a pedicure, a soothing process that would feel good to him and help with the condition of his feet and toenails.  I scoped out the nail salon in advance to make sure the chair was accessible (it was - it rotated to the side so he could back up to it using his walker and then sit down) and that the technicians were aware of his needs, including a brand-new filter being installed in the pedicure basin (compromised-immunity system awareness!).  They were VERY accommodating and nice, and, of course, they took an instant liking to Dad, making that activity an easy one to cross off our to-do list on a Good Day.


One plan that Dad wanted to put in motion right away was to visit his mom at the nursing home. He was very worried about how she was doing, and so, on the Sunday after his second chemo treatment, Mom and my sister loaded Dad into the car and drove the short distance in the cold to see Grandmom, who lit up as always when she saw Dad and who didn’t seem to notice the change in his appearance, including the jagged scar on the top of his head or the wheelchair in which he was seated.

When I think back about all of the things with which Dad was struggling at the time and how he wanted so badly to check on his mom and to tell her that he loved her, it makes me so sad that something that simple was such an effort for him, but at the same time it makes me so very proud of his determination to look after his mom even when he was so sick himself.  Through all of the Good Day attempts, undertakings, and dreams, I was a witness to Dad’s optimism, bravery, and drive, time and time again, and I learned that a good day was only relative, dependent not on the actual experience but on perspective.  

Up next … Part 28 - Friends

Part 26 - Oh, $*#^&!

Continued from Part 25

On the eve of Round 2 of Chemo for Dad, I thought he would sleep that night (every night we had some kind of new Plan or at least a theory of why that night would be THE NIGHT the sleeping would return), but the routine remained the same:  awake and talking until around 3 a.m., then headache, then pain meds, then more chatting, and finally snoozing around 5 a.m.  As part of my work responsibilities, I was scheduled to go to a conference about an hour away from my parents’ house the day after the appointment at the oncologist's office.  When it was time for me to leave, I went into my parents’ bedroom and saw Dad lying in bed with his eyes open. 

“I have to leave now to make it to the conference,” I told him. Dad had always tried to instill promptness and non-absenteeism in my sisters and me; he hated to take sick days and often said that he felt that sometimes people “let themselves off the hook way too easily” when it came to calling in sick to work.  But not on this day: in a moment I will never forget, he looked up at me and said ever so sadly, “Don’t go!  Just stay here with me!” 

I don’t know exactly why remembering this scene makes me cry every time I think of it.  Maybe it’s because he was asking for something so simple, and yet I thought to myself, “He doesn’t really mean that – he expects me to show up for work like I’m supposed to and like he’s always taught me to do.”  This time, I let myself off the hook way too easily by not calling in to say I wasn’t going to work, and I will always regret doing so that day.  I told him that he was scheduled to have therapy in the morning and then could relax in the afternoon, and he said "I'm planning to sleep with Foster all day!"

“No!” I said, alarmed and thinking that he was going to start refusing to participate in his therapy sessions or, worse, stop getting out of bed for any reason.  He laughed and said he was just kidding, and, with that, I hit the road.  

When I got to the conference, I was distracted and worried about Dad and Mom; I was definitely not the most attentive learner there that day.  In the middle of one of the sessions I was attending, I realized that we’d never gotten an answer from the nurse practitioner the day before about adjusting the steroid doseage, and so I stepped out of the meeting and put a call in to the oncologist’s office for clarification.  With my hand on my cell phone the whole time as I waited for a call back, I went to a few more sessions.  Finally, as the conference was winding up that day, my phone vibrated and I sprinted into the hallway to take the call.  Nurse practitioner said they wanted to keep Dad on the same dosage for now and would re-evaluate after the MRI scan in two more weeks.  

Fueled by frustration and concern, I left the conference center and drove back to Mom and Dad’s.  Dad was in the middle of a late-afternoon physical therapy session; they were working on figuring out the best way for him to get from the floor onto the couch, presumably in case he fell at some point.  Just like I had been at the conference, Dad was far from being fully invested; he was putting in some effort but obviously just wanted the session to end.   Like the majority of the therapy sessions he went through while he was sick, he tried his best and was a good sport, but he didn’t see the point of it and just wanted to get through it, so very unlike his pre-cancer workout tendencies.  After P.T. was over, Mom left to go run some errands, and Dad talked me into taking him to Sonic for a large Diet Coke.  As I drove along the winding two-lane road on our mission, I had the opportunity for “good memory hoarding” - Here’s that story, as I told it many months ago ... HOARDING MEMORIES

Large Diet Coke in hand, we made it home and sat at the kitchen table talking for awhile.  On a whim, I told Dad that I wanted to check something out:  I used the newspaper as a shield so that he couldn’t see his own arm, and then I tapped various locations on his arm and asked him to tell me when he felt me touching him.  Since before the surgery, Dad had not been able to discern when his left arm or hand was being touched; sometimes when he looked at it, he didn’t even think it was his.  But there at the kitchen table, as he casually sipped his Diet Coke, he was 100% accurate at indicating touch.  I was elated!  As soon as Mom got home, I showed her what he was able to do.  When we saw that he was able to do the same thing again and again, the two of us were cheering and almost crying we were so excited.

After several minutes of listening to us carry on, Dad said flatly, “I don’t see what the big deal is!”  I explained to him that this was a provable measure of improvement, a sign that the treatment was working.  “It’s a victory, a small one, but still a win,” I told him, “like winning your heat to qualify for the final in a track meet.”

“Well,” he said, without even a hint of the thrill we were experiencing, “I’ll wait to be excited when I can do everything I used to be able to do with this arm.”  Evidently, I would have to continue waiting for more evidence in my role as Microscopic Improvement Recognition Specialist.

Dad didn’t want to talk about minor improvements. He didn’t want food or visitors or phone calls or TV.  Except for those few minutes in our car ride that day, he didn’t want to listen to music, something else very unlike his pre-tumor self.  What he wanted, simply, was to sleep at night – and we were hanging our hats on the hope that would improve once the steroid dose was decreased - and to be able to poop.

That wasn’t what was going to get him better, obviously, but it was a big deal, something that interfered with his comfort and his routine on a daily basis while he was sick.  One of the side effects of several of the medicines that Dad was on was chronic constipation.  Dad contended that the bigger reason for his pressing issues, pun intended, was the lack of exercise that he was able to do.  He told every medical professional he saw – and a few other people as well, including woman who cleaned his room in the hospital when he first got sick, that he needed to take laxatives because if he couldn’t run, he wouldn’t be able “to go to the BATHROOM bathroom.”  

One of the side effects of another of the drugs he was taking, one of the two types of chemo on the protocol from the clinical trial, was diarrhea; in fact, we had been told by our first Chemo Nurse that it was so common with this medication, which was called Irinotecan, that oncology-staff members often referred to it as “I Run To The Can.”  

But Dad didn’t.  The chemo did its thing and then the appetite went.  Nothing was going in, so nothing was going out.  It became a weird, frequent conversation in our family.  We did what we could to increase his fiber and his fluid intake, but, for the most part, it was just one of the ongoing problems for which there was no viable solution, another point of suffering just to get through, something else to look forward to not having to deal with when the minor improvements became more, when my job as Microscopic Improvement Recognition Specialist finally paid off, as I fully expected it to do.  And so, as we had been, we settled in the best we could and we waited.

Coming soon ... Part 27 - A Few Good Days