Part 22 - Bumps In The Road

Continued from Part 21 

On the morning after we returned from the trip to Duke, we were awakened by an early morning phone call. It was a nurse from the nursing home where my grandmother was, calling to tell us that Grandmom had taken a turn for the worse.  My siblings and I quickly got dressed and raced to the nursing home. 

Grandmom looked and sounded awful.  She was unresponsive and was struggling so much to breathe that the nurse was having to suction the secretions in her throat every 30 minutes or more to help her breathe.  Grandmom had nursing support both from her nursing home and from a Hospice service, and the Hospice advised us to just sit with her and talk to her. “She hasn’t been able to eat or drink in a couple of days, and she has a high fever that isn’t responding to medication.  We are giving her medicine to keep her comfortable,” she told us.

So that’s what we did; we sat with Grandmom, with one of us holding each of her hands, and we talked to her.  We told her that we loved her and that we were so very proud of her.  We remembered aloud some of the good times we’d had with her, and we told her that Granddad, her husband of 50 years, was waiting for her in heaven.  She didn’t seem to be in pain, really, but she didn’t seem very comfortable either.  I hated seeing her like that; she had suffered so much already as a result of the decline in her physical and mental status over the past couple of years.  She had worked hard in her 90 years of life and had fought hard since she’d gotten sick.  The hospice nurse told us that she thought Grandmom would only be able to hang on for a few more days.  We brushed her hair back out of her face and cried quiet tears as we sat with her, trying to figure out what we could do to help her. 

As the hospice nurse got up to leave, I stepped into the hallway and told her that I did NOT want Dad to be told about Grandmom’s worsened condition, nor did I want anything about Dad’s illness to be mentioned in Grandmom’s presence.  From my perspective, each of them had enough to cope with at the time; I felt it was our responsibility to take care of them and to protect them so that neither of them would have to worry about the other one at that point.  The hospice nurse made it obvious that she disagreed with me; she even said that she planned to “stop by” my parents’ house later that day to “check in.”  Hmmm.

First of all, how freaking RUDE is it to “stop by” the house of someone who is very ill?  Secondly, it was obvious by her refusal to commit to keeping quiet that it was a fair bet that she was at least considering telling Dad about his mother’s condition.  I didn’t have any official authority about anything that was going on with either my dad or my grandmother, but I had been very involved in caring for both of them, and here was a fact to which Buttinsky Nurse evidently had yet to be enlightened:  My mother, my siblings, and I were operating as a team.  There was no division of power or usurping the authority of one of us by going behind that person’s back to confer with (or tattle to) another one. That Daughter Bear (and Granddaughter Bear) instinct was kicked into high gear.  I left it with B. Nurse (ok, I had another “B-word” nickname for her in my head besides “Buttinsky”) that she was to check with my mom, who did have legal authority in both cases, before she did anything, including “stopping by” my parents’ house. 

Meanwhile, back at my parents’ house, Dad wasn’t feeling better as we’d been told that he would be after the Avastin infusion a couple of days before; in fact, he had developed a severely sore throat and his headache and fatigue seemed to be worsening.  He was struggling just to sit in his recliner in the den while the grandchildren waited on him and some Christmas decorations were being put up in my parents’ house.  A flurry of phone calls and text messages went around and it was decided that we would divide up to spend as much time as we could with Grandmom, to help take care of Dad, and to function as the support staff to get food and whatever else was needed for those in the first two positions. 

Dad, with his Healing Hat on, playing with Foster

All in all, Dad felt like crap.  As usual, he was trying his best to “hang tough,” attempting to distract himself by playing with his cat Foster and to keep a smile on his face, especially around his six grandchildren.  Not even chocolate ice cream, tomato soup (his favorite), or a Diet Coke from Sonic made him feel any better at all, though.  In what became a very unfortunate and tragic pattern for us over the next six weeks, doctors’ offices were closed that day due to the holiday, and so we knew we wouldn’t be able to get in touch with the oncologist who was familiar with Dad and his case.  By the end of the day, I had decided to call the emergency line at the neuro-oncologists’ office at Duke to let them know about the new/worsening symptoms and the lack of improvement.  The on-call doctor called me back fairly quickly, listened to my concerns, and then said that the problematic symptoms were likely just a side effect of the chemo and/or the Avastin and that we should increase Dad’s pain medications and check with the hometown oncologist on Monday morning.  I felt like I was trying to move a mountain, one spoonful of dirt at a time. 

Next in the Behind the Scene Story ... Part 23 - Waiting for the Magic

What I Miss The Most

I miss my dad, a lot, all the time.  Lately, I’ve been thinking about what it is about him that I miss the most.  As anyone who knows me know, I love lists.   So here’s my list so far for What I Miss The Most …

 *I miss seeing the wrinkles that formed around the outside corners of his eyes when he laughed or smiled, both of which he did A LOT.  So often people don’t want to be photographed if they are not at whatever they consider to be their best – their hair isn’t just right, they need to lose a few pounds, the weather is too hot/cold/windy, they don’t have the “perfect” outfit on, etc.  I’m so grateful that Dad didn’t worry about any of that; having so many photos of him, especially when not everything was “picture perfect,” has been and continues to be so comforting to me.

*I miss his technologically-inept, stream-of-thought text and email messages – which he typically signed with his initials in lower-case or two slash marks or both.  He didn’t worry if everything was exactly right before he texted or sent an email.  He just wanted to convey a message, and he did that so well through so much more than just with words.  His emotions (usually his enthusiasm and humor) were evident in those messages, and they were contagious.  The emails and text were full of life, just like he was.
 

*I miss his excitement for whatever was coming up – he loved to make plans, always wanted to “have something on the calendar” to look forward to.  I am finding that to be good advice for moving forward in my grief, too.

  

*I miss watching his interaction with his grandchildren.  They called him Gramps, and their relationship with him was different from every other grandparent-grandchild connection I’ve ever seen.  He was not only one of their biggest fans but also a one-man Entertainment Committee for them (and for us).  He loved to plan things that he thought would amuse and delight them.  For example, when he knew one or more of his grandchildren were coming to visit, he loved to hide from them and then jump out and “scare” them (it wasn’t really that scary because he did it every single time!).  He loved to tell them ghost stories, complete with a flashlight and scary noises for emphasis.  When my parents first moved into a new house after Mom retired, Dad schemed for weeks about how he could best use the little historic graveyard right in the middle of their new neighborhood as a prop when the grandkids came to visit.  When the day finally arrived, he sneaked around the back of the neighborhood while my mom took the kids on a walk so that he could hide in the little graveyard.  It was a grand plan, except that (a) he wasn’t really that sneaky – the grandkids knew from his behavior and the look on his face that he was planning something before they even left on their walk, and (b) some of the neighbors (who didn’t know him yet) saw him hiding under the tarp waiting to jump out at the kids and were ready to intervene (they told us later that they had been considering calling the police), thinking it was some creepy guy waiting to attack an innocent woman and her grandchildren!  

Dad laughing, after a shaving cream attack by the grandkids

*I miss hearing his voice – talking and singing and laughing.  We have some audio recordings of his voice, but of course it’s not the same.

 

*I miss his goofiness, his sense of humor, and his willingness to take a joke and to make fun of himself.  When my younger daughter was learning to ride a bicycle without training wheels, we had a set of Barbie biking gloves, helmet, and knee pads (in case of a fall).  Dad saw them later in our garage and put them on himself, which was funny - but not nearly as funny as it was when he discovered the knee pads were so small that he couldn’t get them off without assistance.  (We "let" him wear them for awhile just for effect before we helped him get them off.)

Dad, hamming it up with Mom's purse

*I miss the inside jokes and the memories that only the two of us shared.  There were so many, and I'm so afraid that I will forget some of them.  Some of them are important; others are not so much but still help to quell the pain in my heart when I think about them, like when I was a teenager and I bragged to him that I was learning sign language.  He said, "I already know sign language!" and then demonstrated his skill level by flipping me the bird with both hands (all of this while he was driving down the road).  


*I miss his perspective, his positive attitude, and his way of dealing with different types of people and situations.   He never missed a chance to say hello or to speak kindly to another person.  He always looked on the bright side, and he felt so lucky every single day that the rest of us, by association, did too.

I am sure many more things will go on this list in the days, months, and years ahead.  Simply put, where my dad used to be, there is a hole in the world, one that I keep finding myself either having to walk around or falling into.

Part 7 – A Revised Bucket List

Continued from Part 6

When people talk about having a Bucket List, they picture themselves in the same physical and mental condition as - and usually in better financial condition than - they are at the time, being able to do things that they want to complete in their lifetimes.  We thought of a Bucket List in that same way, until Dad couldn’t. 

Two days after Dad’s surgery, the oncologist came to see him in the ICU and, with my mother and my youngest sister there, told him about the cancer.  Dad asked what would happen if he didn’t have chemo or some kind of treatment, and the doctor said, "Your lifespan would be shortened considerably.”  

In what Dad seemed to consider to be the worst part of the news, the doctor told him that he would not be able to drive a car or to go to work during the treatment period, which he said he anticipated to be about for six weeks.  The oncologist said that, if they could get the cancer into remission, it was highly likely that the cancer would recur despite treatment but that there were different options including clinical trials  that could be considered at that point.  Dad asked how soon treatment could be started ("The sooner the better!" Dad said.), and the oncologist told him he would need more time to recover from the surgery but that chemo would probably start before Thanksgiving.  

Dad, working on his Original Bucket List, in better days

Later that day, Dad was transferred from the Neuro-ICU to a room on the Neuro floor of the hospital.  (I was so relieved that the doctors wanted him to be on that floor instead of the Oncology floor.  It seemed to me to be a symbol of Hope at the time, but we later found out the quality of care at that hospital was actually better in Oncology.)  Some of Dad’s tubes and wires were removed, and, with a walker and lots of assistance and supervision, including constant reminders to keep his hands on the grips of the walker, he started to be able to move from the bed to a reclining chair or the bathroom and back. 

The no-sleep persisted, and so we had lots of time to talk to Dad.  With the tentative plan for chemo in place, he began to think about other plans for the future.  We all desperately wanted to have something for him – and for us – to look forward to, and thus Dad’s Revised Bucket Plan began to take shape.  There wasn’t going to be any skydiving or mountain climbing for him, but there were still things he wanted to do, and we wanted so badly for him to be able to do them.

Another thing ticked off the Original Bucket List

Dad’s Revised Bucket Plan took many forms over the upcoming days and weeks; we spent countless hours talking to him and to each other about what he would be able to do for the rest of his life, with a particular focus on quality and fun and fulfillment.  Dad already had more than the average person under his belt as far as major life accomplishments (for example, he’d run the Boston Marathon twice, and he once ran a half-marathon down Pikes Peak - a.k.a. "El Capitan" - in the Rocky Mountains), but he had many more goals left to accomplish.

One of his biggest original goals was happening one week later – the Ironman Triathlon – and it was evident that he wasn’t going to make it.  Right after his surgery, he asked if I would call and see if his registration could be deferred; he thought he could do the Ironman the next year instead.  Cruelly, though, he gradually realized that wasn’t going to happen, and, over the course of the next few weeks, he kept having to change his ideas about what would be possible for him.  Finally, he ended up focusing on wanting to be on a relay running team for a long-distance event; he and I spent hours one night looking up such events and finally settled on one  called the Illinois River to River Relay in which an 8-person running team tag-teamed to cover a distance of 80 miles, with teamwork and covering the distance being more of a goal than speed.  He said, “I could tell the team ahead of time that I might have to walk a little bit, just in case.”

Dad and one of his best friends Bob at the 100th Boston Marathon

Dad with one of his best friends Wayne after they finished the 100th Boston Marathon

The focus of the second part of his Revised Bucket List was family.  He wanted to go on a big family vacation – at first to a beach (“Preferably to the Pacific,” he said.) and then that got revised to just going to a lake or a river nearby with the whole family.  He said he really wanted to go to an NBA game with his children, my two younger sisters, my brother (from my dad’s first marriage), and me.  “Long-term,” he said, “I’d like to be around to dance at my grandchildren’s weddings.”  I thought that was a kick-ass goal, especially since his youngest grandchild wasn't quite two at the time.

And last - but certainly not least - on his Revised Bucket List was to get a cat.  He saw this as possibly the biggest challenge of the things on his list; my mom isn’t a big fan of cats, and so he knew he would have to convince her that it was a good idea before he could execute his plan.  We spent lots of time debating about how he should approach her and then, after he said he thought she was “starting to cave,” we talked and talked about what the cat should be named.  It took him several days to decide on a name, but he was clear all along about what he wanted in a cat: “one that's not too young but not too old, that will be friends with the dogs [their two greyhounds] and that will be a lap cat.” 

What I learned from watching my dad revise his Bucket List so quickly and so drastically is that there is little difference between something that makes you happy and something that doesn’t; the trick is to convince yourself that they are the same.  On one hand, it ripped my heart out to see a man who was so enthusiastic and energetic having to resort to modifying his Bucket List, but on the other hand I was so incredibly inspired and touched that this same up-for-anything guy was so humble and willing to make those sacrifices so as to become satisfied with a Plan B, something different and ultimately less but fulfilling and sweet all the same.

Up next … Part 8 – Safety First

This One's For You, Dad

There are a lot of things about my dad that someone who didn’t have the privilege of knowing him well might not really understand - things that were such a part of him, things that really made him the person he was, things that I want to be sure to always remember. Here are a few:

*Many times when he wanted to buy my mom a present, he couldn’t figure out what to buy, and so he went to a store that sold women's clothing and just bought everything on one of the manikins, including the shoes and jewelry. He would point to a manikin and say to the sales clerk, "She looks about the same size as my wife. Can I please buy everything she has on?"
*He tried desperately to keep up with technology, including social networking, because, as he said, "I need to stay connected!" However, he often got things in this category confused. Despite many lessons from his grandchildren, he never understood how other people could see what he put on his Facebook profile. And he sometimes got mixed up about the term "text" and called it "twist."
*Whenever he competed in races that he didn't really have a chance of winning, he often made up a category and proclaimed himself the winner of that. For example, once after a biking race, he said, "I didn't win my age group, but I was the first guy over 50 to finish who didn't wear biking shorts." (He wore running shorts when riding his bike early in his biking "career.")
*He was preparing to do an Ironman triathlon, at the age of 67.

*He thought it was a good idea to “round up” in the amount of exercise time – he regularly told my mom that he was going to run or bike for a certain amount of time and then actually went for longer, basing his time on how long he thought it would take her to notice he had exceeded his original “bid”
*He once told his grandchildren to load up in the car for a “big surprise,” which ended up being a sale he had found for some fake-Croc shoes AT A GAS STATION.
*He LOVED to try to jump out and scare people, and this became a long-standing family joke because he was TERRIBLE at hiding. And every ghost story he told ended the same exact way, with him saying something like "And the boy went up the ladder, climbing the first step, then the second, then the third, until SOMETHING GRABBED HIM - his friend!" (Even when the kids were young, they weren't at all scared by his ghost stories.)
*Anytime a holiday was coming up that involved a gift for him like Father’s Day or his birthday, he would suggest (repeatedly) that we give him the gift ahead of time. Then when the actual holiday rolled around, he would jokingly say that we didn’t give him anything. Which brings me to what made me think of some of these quirks …

Last night, I dreamed that I was talking to Dad on the phone, and he laughed and said, “Thanks for calling, but what did you get me for Father’s Day? I don't think I got anything from you.” After thinking about it, I now have a new plan:

CANCER IS NOT GOING TO KEEP ME FROM HONORING MY DAD ON FATHER’S DAYS FOR THE REST OF MY LIFE!

So here’s what I got you this year, Dad, and I hope you like it: