Dear Santa

As far back as I can remember when I was a child, my dad made a point to remind my sisters and me every year on Christmas Eve that Santa liked to have beer left out for him at some houses instead of milk.  I remember asking Dad if Santa would mind if the beer was hot by the time he got to our house and Dad said, no, any beer is good beer, even a hot one.  

Fast-forward a couple of decades later when I told my own children that Santa liked beer instead of milk.  Things went according to my plan until my older daughter was asked to write a letter to Santa as an assignment in her first grade class.  The letter started out like most of them do: "Dear Santa,  Hi! How are you?"  It was written in very neat handwriting with good spacing and sizing of the letters, and I’m sure the teacher was very impressed, until she got to the more unique part where my daughter wrote, “My mom says you like behr more than milk do you? Even hot?”

My daughter finished the letter with her list of a few things she wanted Santa to bring her that year and a “Thank you!” and then signed her name at the bottom of the page.  She added a couple of little drawings out to the side which she often did in those days; I doubt that distracted the teacher from the Mom ♥ Beer message in the body of the letter though.  The letter was mounted on a piece of construction paper and taped to the classroom wall for all to see at the PTA Open House that week.  I remember telling my dad about it on the phone the next day and hearing him laugh through the phone as if it were the world’s funniest joke.   “It’s like a treat you gave to yourself years later,” I told him, to which he laughed even harder.

Not Knowing - Grandmom's Story, Part 5

Continued from Grandmom's Story, Part 4

Mourning the loss of my grandmother in between the time that she died and the time of her funeral brought with it many emotions; even in the midst of the series of aftershocks that my family felt as a result of the compounded, extended grief after first my dad's death and then his mother's, I found it hard to believe that she was really gone.  She had been slipping away - and it could even be argued that she had already slipped away in essentially all forms except for the physical - for several years, and we knew her time was near, but not coming together as a family to grieve during those few weeks made it difficult for me to accept.  

I knew that I wanted to be prepared to say something about her life to those who would gather to honor her memory; I spent many nights sitting up, intending to write down what I wanted to say but not being able to, either because the words just wouldn't come or because the tears that flowed kept me from being able to see clearly enough to record my thoughts on paper.  I re-read some of the many letters that Grandmom had written to me over the years, and I looked at lots and lots of photos of her from during her life, many of which had also been taken with my dad by her side.  I created a slideshow of many of the pictures and selected background music to go along with it.  None of it helped me to process things or to come up with what I felt were the right words to say as a tribute, though; I ended up leaving to make the trip to the town where my grandmother had lived for 5 decades and some change - and where my dad had grown up - without a firm idea of the words that I wanted to say during the memorial service.

My husband, my daughters, and I met my mom, my sister Nancy, and her husband David at the hotel where we were staying for the weekend; many of the members of my dad's side of our extended family were staying at that same hotel, and, after not having seen the majority of them since I was a teenager, it was a little surreal to keep running into them a little at a time in different settings, in the hotel elevator, the lobby, the parking lot, and the Waffle House next door to the hotel.  I had to tell myself countless times to hold it together, because, as each layer of the family reunited, the subject of my dad's very unexpected illness and death was naturally piggybacked onto that of my grandmother's passing, a recurrent one-two punch that I didn't think I had near the stamina to withstand.  

I didn't sleep much the night before the funeral; I felt unsettled and almost inconsolable.  I texted back and forth with my sister Jennifer who had not been able to make the trip from California that weekend, and together we came up with a message that I planned to communicate at the service the next day.

It's difficult to organize a funeral from out of town, especially in a town with limited resources and where one has limited connections - and especially in a state of compounded grief.  Not knowing what the best thing to do would be, we planned to have the service at the funeral home and then, at the invitation of the members of my grandmother's church, to have fellowship and food afterwards at the church.  Based on a decision my parents had made before my dad had gotten sick, my grandmother's body had been cremated, and my mom had the task of transporting her remains to the funeral home, allowing my grandmother an opportunity to go home in yet another sense.

                       Click to view the slideshow from my grandmother's funeral

When we arrived at the funeral home, we took a few minutes to set up the video projector and my computer so that the slideshow of photos of Grandmom could be shown on the wall of the chapel before the service, and then we met briefly with the funeral director, at which point it came to light that a burial service was not planned as part of the arrangements for that day.  When that realization hit me, I felt the floor drop out from underneath me; it seemed so utterly disrespectful and as if Grandmom's death - and her life - were being disregarded.  I hadn't known that a ceremony for the burial hadn't been planned, and I felt strongly that as a family we needed to lay her to rest, essentially to take the opportunity to do the last thing that we would ever be able to do for her - and maybe for my dad as well.  In the midst of the back-and-forth banter about if and how the arrangements could be changed, my brother-in-law David saw the look on my face and took the funeral director aside.  I'm not sure what he said to the guy, but a few minutes later David came back over and said, "After the memorial service, immediate family can meet the funeral director at the gravesite for the burial of the ashes; is that ok?"  I felt hot tears of gratitude and grief spring to my eyes, and a minute later we were called to come into the chapel for the service to begin.  

The music was playing and the photos of Grandmom were being projected as planned; again things seemed surreal, and I felt as if I were floating to my seat on the front pew.  My father's brothers were in the aisle behind us; his sister had not been able to attend from out-of-state due to her own poor health.  As the music ended, the minister from my grandmother's church stepped up to the microphone and began the service; my grandmother and this woman had not known each other, but the minister knew of my grandmother and certainly of the decades of service that she had given to the church.  She gave an eloquent sermon, a fitting tribute to a woman who had so loved her church and her community and the people of both.  After she had finished, she invited me to come up and speak on behalf of the family.  I pulled out my scribbled notes, and here is what I said:

I know that my grandmother truly appreciated the love of all of you and that she would want to thank everyone who helped her during her life, just as she helped so many of us with her smile, her openness, and her perspective.  So thank you to everyone who visited her and kept her company over the years and to those who ran errands for her once her vision began to fail, especially those who drove her to her doctor's appointments and to Fairfax Methodist Church, which she loved so much.  She would also definitely want to thank my mom and my dad, who did such an amazing job caring for her, particularly over the past few years.  When my dad was sick, he worried so much about his mother.  My mom promised him that she would be there for Grandmom, just as she and Dad had always been, and she was.  When Grandmom passed, Mom was with her, holding her hand, and, for that and for everything else, Mom, Grandmom would want to thank you, and I do too.  

I finished up by thanking people for coming to honor my grandmother's life, although the exact words that I said to convey that part of the message probably got lost somewhere in the midst of my tears, which had started as soon as I said, "When my dad was sick, ..."   I am not a crier.  I felt somehow that my uncontrollable tear-shedding was something of which Dad and Grandmom would not approve - and possibly even something they wouldn't understand; I could almost hear them telling me from behind the scenes to get it together, but I just couldn't do it.  I looked over at my family and at my dad's brothers as I walked back toward my seat on the pew, and I saw that they were all crying too.  The sadness was palpable in the air; after the family members had walked from the chapel into the lobby, we could still hear one man in particular sobbing.  We later found out that it was one of Grandmom's long-time neighbors; while I felt great sorrow at the man's apparent grief, it was a touching reminder of my grandmother's impact and that she had touched so many people, many of whom we didn't even know.  

After the service, family members congregated in the foyer and thanked people for coming as they filed out in the parking lot.  In a quiet moment, I told my dad's cousins Carl and his sister about the dream I had had about their grandfather; the three of us agreed that we were comforted by the thought that our loved ones who had gone on ahead were together now.

After that, we drove to the cemetery and parked near the place where my grandfather had been buried many years before.  The funeral home director and his assistant met us there with a flowers from the service and a shovel; we stood quietly with the sun beaming down on us as we watched the burial of Grandmom's ashes.  It was a simple ceremony, but yet it felt tender and unabridged. 

I will never forget the meal afterwards at the church where my grandmother had been a member for over 50 years, where she had volunteered as the church librarian, and where a couple of years ago the church library was dedicated to her.  The food, which had been prepared by church members, many of whom had been friends of Grandmom’s for decades and some of whom had known Dad since he was young, nourished more than just our bodies.  We didn’t  know most of them, and most of them didn’t know us; but we knew each other’s hearts because we all knew Grandmom, and she was nothing if not heart and spirit. 

Before we said our goodbyes and left the church, we went upstairs to the library that bore my grandmother's name.  We admired the plaque with the engraved dedication to her for her years of service to the church, and we thumbed through some of the neatly organized books on the shelves in the room.  My sister and I came across several sticky-notes tucked inside books; on the notes were two things that made us smile: the name of Dad's business, letting us know that he had donated some office supplies to the library, and a sampling of Grandmom's unique style of penmanship; she had written notes about each book, possibly to herself or maybe to future readers.  

After we'd gotten back to the hotel, some of our group decided to go antiquing in a few nearby stores; my sister Nancy and I walked to a convenience store and bought some beer, and then we sat in the sun and drank it, still wearing our funeral dresses, on the tailgate of my husband's truck in the parking lot in back of the hotel.  Whether it was the sun or the beer or the company - or a combination of all three, sitting out there felt somewhat curative; we knew it was exactly what Dad would have done had he been there, and somehow knowing that helped a little bit, too.

My grandparents' house, where my dad grew up

The next day, we packed up the car and drove around the little town one last time.  We ended our tour by driving past the old textile mill where both of my grandparents had worked for almost all of their adult lives.  The building was in the midst of being torn down, overseas outsourcing having taken the work that had provided a living for many of the townspeople for so many years.  I watched in the side mirror as the mill got smaller and smaller as we drove away, and I felt unexpectedly sad to know that this would probably be the last time I would ever come to this place, a town that held so much of my grandmother and my dad - and even a little bit of me. 

"The Mill"

Off-Label Uses

Sometimes people use a medication or a health care product to help with things besides the ailment or condition that the product was intended to address.  This off-label use is often done out of necessity, when things recommended by health care professionals or others have not solved the problem.  It's more of a last resort, a whatever-it-takes type of effort, or sometimes just a belief in a wives' tale or a carrying on of tradition than a science project.

Vicks VapoRub ointment is one product that has been said to work for treating things other than what its label says it treats; a couple of its off-label uses are treating toenail fungus and repelling mosquitoes. 

Proctor & Gamble, the company that makes Vicks, has a disclaimer on their website that says their product "can be used for the treatment of cough associated with the common cold" but that they "haven't tested, nor has the FDA approved, Vicks VapoRub as a toenail fungus treatment" and, therefore, they say, it is not recommend for the treatment of toenail fungus.  I think there are lots of people, though, who swear that Vicks alleviates them of that condition.  Not having fungus-y toenails (yay for me!), I haven't ever tried using it for that, but I have tried it a couple of times for keeping mosquitoes away when I've run out of Off! and it seemed to work just fine for that.

One of my sisters has yet another off-label use for Vicks Vaporub: she puts a little bit of it under each of her eyes whenever she has trouble sleeping.  She's done that since she was a teenager; she says the fumes it gives off sting her eyes, which forces her to keep her eyes closed, which eventually causes her to get bored enough to go to sleep.  I don't see any kind of warning about that on the Vicks website, so I guess it's an ok thing to do, and, as anyone who has ever suffered (and I do mean suffered) from insomnia can attest, at a certain point in a sleepless night, it's anything goes/whatever works to provide a little shut-eye before the sun comes up.

When I was running competitively a lot in high school, I sometimes tried to emulate some of the rituals that my dad had surrounding his running routine. One thing he did that I started imitating then was taking a couple of swigs out of the bottle of Mylanta that we kept on the door of the fridge as soon as I came in from a strenuous run.  I didn't know why he did it; I just did it because he did.  Many years later, I happened to think about how we used to do that, and I asked him why he did it back then.  "When you run hard, most of your blood goes to your arms and legs instead of to organs like your stomach, and so a hard run can make you feel sick to your stomach, and Mylanta helps with that," he told me.  I kind of half-laughed and asked him he'd ever tried any other remedies for the same problem, and he said, "Well, I guess I've tried beer, but I'm not sure if that helped my stomach or if it just tasted so good after a hard run that I didn't care if my stomach hurt."

I don't think the company that makes Mylanta has looked into billing it as a special after-workout remedy for runners, but maybe they should.  I know of another off-label use for it that they could advertise, too: when my oldest child was a baby, I worked in a nursing home, and one of the residents there told me that I should try using a liquid antacid like Mylanta to treat diaper rash.  "Just put some on a cotton ball and dab it on the rash," she told me.  Later, when I tried it, I found out that it worked better than any diaper-rash ointment I'd tried.  I ended up telling a friend of mine who was also a new parent about it; luckily, she asked me for clarification of how it should be used before she tried it because she later told me that she first thought I'd meant that an oral dose of it should be given to the baby. 

One thing that has surprised me about the process of grief has been the way the emotional pain often flows over into physical pain, and one way that that has occurred for me has been in the form of back pain.  Before I'd really realized what was causing the pain that plagued me night and day, I had been attributing the pain to poor posture or just to having slept  wrong, and I tried the usual treatments - ice, heat, stretching, pills, chiropractic.  Nothing worked, at least not for very long.  Finally, after reading about the grief process, I came to the conclusion that my sorrow and the other emotions tied up with the whole process had sort of settled into the joints and the muscles affecting my back, and I told myself that, like a lot of the intense emotional pain I was feeling at the time, I just had to ride it out until it got better on its own in time. In the meantime, though, especially at night, I ended up calling on my old running training buddy, Icy Hot.  The weird first cold-then hot numbing action it has helped me to relax; some nights it was the only thing that allowed me to go to sleep, essentially making it yet another product with an off-label use, this time to curb the often almost-debilitating pain of raw grief.

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 23 – Waiting For The Magic

Continued from Part 22

If I had to characterize my paternal grandmother in just a few words, I would describe her as tough and fiercely independent.  Apparently, nobody gave her the memo about what the hospice nurse had said on the day after Thanksgiving, and she showcased her tenacity yet again over the weekend by starting to improve in her condition.  By the middle of the following week, she was eating, drinking, and occasionally even giving one-word answers or nodding to respond to yes or no questions she was asked.  So much for the prediction; evidently, they cannot call all of them, and we were grateful that Grandmom was able to get back into her routine at the nursing home.

As the weekend came to a close, those of us from out-of-town left in waves, until just my youngest sister N and my brother and his wife and children were left.  N had to work on Monday, and so my brother volunteered to accompany Mom and Dad to the oncologist’s office that day.  In what was surely a complete surprise to everyone in the family (heh!), I had written out a list of questions and requests to be addressed by the doctor and his staff at the appointment, especially since Dad continued to have a very sore throat and had now developed a hoarse voice and a cough in addition to the headache and fatigue that had been plaguing him.  On my list:  I felt that we needed to have a Case Manager onboard, someone to coordinate between the staff at the Brain Tumor Clinic at Duke and our local oncologist’s office.  I wanted to be sure that none of the recommendations of the Duke doctors was overlooked, including tapering the steroids, scheduling the next round of chemo/Avastin exactly two weeks from the initial dose, and scheduling an MRI one month after the Duke protocol had been started.  I wanted to be sure the payment "issue" had been resolved with regards to the Avastin (it had).  My brother took notes to the side of my list in the Notebook, Dad was given a fresh rotation of prescriptions, and the next round of appointments was set up.  

Part of the rules for during the time that Dad was taking the chemo pill was that he could not drink any alcohol for those five days per month.  In addition, the doctors at Duke had specified that he was only allowed to drink one beer per day on the other days because his liver would already be working overtime filtering out the chemo that was left in his system.  Dad, however, wanted his Foster’s.  He wanted candy too, “just a little piece of chocolate,” as he requested multiple times per day.  The candy we were fairly free with, especially considering that the scale at the oncologist’s office showed that he had lost weight since he’d left rehab, which was a common side effect of the chemo.  We had to come up with an alternate plan for the beer, though.  Dad sometimes seemed to understand why he wasn’t supposed to have it; other times he got angry about it.  At times, he forgot that he’d already had his “one for the day,” and he insisted that we get him another one.  Other times, he looked at us innocently and said, “What’s it going to hurt to have just a couple of beers?” which was a point I found it really hard to argue with.

But we didn’t want to do anything to jeopardize the magic that we were waiting for, the improvements that we had been promised were just around the corner for Dad at Duke and at the appointment with the oncologist this week.  And so … we faked him out improvised … we stocked the fridge with Non-alcoholic beer.  Dad loved feeling like he was in cahoots with one of us when whoever was playing the good guy that day told him we were sneaking him a second one for the day; he savored each sip of the amber-colored Dream in a Plastic Cup (he spilled things so often due to the poor sensation in his dominant hand that we didn’t dare give him a whole can or – even worse – a bottle to drink from!).  Despite the headache and the rest of it, he was pretty happy, and we were happy knowing that he was pretty happy as the waiting for the Magic continued.   

Up Next ... Part 24 - Things That Go “Hello?” In The Night

Part 20 - Birthday Chemo

Continued from Part 19

Part Three of Our Trip To Duke/Our Journey of Hope 

My middle sister’s husband took a red-eye flight overnight to join us on our third day in Durham.  As happy as my mom, my sister, and I were to have him there for reinforcement, I think Dad was even happier; he was really grateful for some male company.  The weather had gotten chilly since we’d gotten there; my brother-in-law had worn a hat and had brought a matching one for Dad, which Dad put on as soon as he got it.  It was my sister’s birthday that day; we sang Happy Birthday to her in the hotel room before we left for our second day of appointments at the Brain Tumor Clinic.  

The birthday girl with Dad, who's wearing his new hat

Since we had additional support that day, we decided to forego the Shuttle Ride From Hell and have my brother-in-law drop us off at the clinic for our mid-morning appointment so that he could get a couple of hours of sleep in the hotel room and then pack up and check out before picking us up so that we hit the road after the appointment.  

We made it to the clinic in plenty of time and were called back into a conference room just a few minutes after our arrival.  Doctor #1 from yesterday entered the room along with Doctor #2, the guy who was actually in charge of the clinical trial with Avastin there.  They got right down to business, filling us in on what a thorough review of Dad’s records and test results had revealed:  “The MRI from just before he left rehab,” Doctor #2 said, “showed that the tumor had more than doubled in size since the debulking four weeks prior to the scan.  There was essentially very limited surgical benefit.”  

The room was quiet for a minute while we took in this information.  I couldn’t stop myself from quickly calculating in my head that if the tumor was originally approximately 4 cm in size and about 80% was removed during the surgery, what was left was about 0.8 cm.  Now they were saying that that had more than doubled in only four weeks, plus another five days had passed since the MRI, and so the tumor was probably close to 2 cm in size at this point.  And, even more alarmingly, in less than another month, it could potentially be back to the size it was when it was originally discovered.  Back to Square One.  Damn.

My next thought was how to bolster Dad’s spirits, since at this point I didn't think I could protect him from the news that had just spilled out like a toxic gas leak in the room.  I looked over at him and saw him flipping through a magazine that had been left out on the conference table.  I couldn’t tell if he'd heard what had been said or not, and I couldn’t decide if I thought it was worse if he had heard it and was in shock or if he was so off-task that he hadn’t even heard the news.

I told myself that we had to focus on what could be done, not what had or hadn’t been done or anything else, and so I charged ahead:  “What do we do now?” I asked these men, who were reputed to be some of the leaders in research and treatment of brain cancer in the country. 

Their answer was simple:  “Let’s get the nurse practitioner in here to explain the details to you and let’s get Avastin going.”

Well, OK.   Nurse practitioner came in with a neatly organized 3-ring binder full of info about Avastin and the two types of chemotherapy Dad would be getting according to their protocol.  She went over it all in detail and also explained how we could get in touch with someone at their office should we have problems or questions.   Just after she finished talking, another nurse stuck her head in the room and said she had just gotten a phone call from the nurse practitioner at Dad’s oncologist’s office at home, who said that since Avastin was not covered by Medicare, they had cancelled the appointment for Dad to get the Avastin and chemo there on Monday.  WHAT???  There was some back-and-forth on this between the staff there; finally the nurse practitioner left the room to try to get in touch with Dad’s oncologist to see what was going on.

While she was gone, the two doctors asked if we had any questions about anything for them (heh!) – um, just a few, yeah!  We tried to be succinct, but we felt like it was our one-shot at getting a lot of information that we needed to know.  They were extremely gracious and patient.  We found out that the team at the Brain Tumor Clinic at Duke saw about 750 patients with newly diagnosed GBM yearly (in comparison to the 5 or fewer cases most oncologists saw annually, even in major cities).  We discussed alternate treatments that my sister and I had read or heard about and why the doctors felt sure that Avastin was a better option for Dad at this point.  We asked about complementary types of medicines like melatonin and other supplements, calcium channel blockers, and Accutane, all of which have been shown in some studies to enhance the positive effects of chemo on this type of brain cancer.  Over and over again we heard them say that Avastin was The Magic Bullet for GBM and that, especially paired with these two types of chemotherapy and followed up by radiation as per their protocol, and that they expected us to see good improvement in function for Dad and significant tumor reduction in a relatively short period of time.  “It’s the one treatment that can shrink this type of tumor and improve neurological function, sometimes in a matter of days,” Doctor #2 said.

As far as I could tell, Dad wasn’t paying attention to much of what was being discussed in the room during this time; he was still browsing through a month-old copy of Time Magazine (WHY was that even in THERE?  Irony, anyone?).  When one of the doctors asked him directly if he had any questions, he said, “How did I even get this?”  The doctors launched into an analysis of several things that are being researched as possible causation factors for a person with a “predisposition” for this type of cancer – farming chemicals, environmental pollutants, and one that really caught our attention:  Agent Orange exposure from time spent in certain areas of Vietnam during the Vietnam War.  The doctors said that one of the residents in their clinic was gathering information as part of a long-term study of possible causation factors for GBM and asked if Dad would like to participate.  Dad immediately said, “Yes!”  I asked what participation would entail, and we were told a blood sample and a DNA sample would be taken, and an interview that would take about an hour and could be done over the phone later would be conducted.  Dad was eager to sign the papers to give his consent for that, and then we moved on to the next topic:  the treatment protocol.

The Duke regiment for GBM treatment involved getting Avastin and the stronger type of chemo called CPT-11 by I.V. once every other week.  For five days every month, the other type of chemo, Temodar, was also administered in pill form.  This cycle would repeat over the course of four months, after which the CPT-11 would be discontinued, daily radiation would be added, and the Avastin/Temodar would be continued for another month.  And then we would see how things were looking.  

The doctors said that Dad could have only one beer per day during chemo because his liver would already be working overtime to process the chemo.  ("I guess I can live with that," he said.)  They said that the steroids should be tapered over the next few weeks under the direction of the at-home oncologist and that if sleep problems persisted Dad should just take Tylenol PM to help him sleep at night instead of something stronger.   We asked about supplements as part of the treatment, and the subject of the use of medicinal marijuana came up.  “I’d say you should try to get some of that,” Doctor #1 said.  “It can help with sleep, anxiety, and nausea.”  Diving right in, my sister asked where we were supposed to get it.  “Oh, you know,” Doctor #2 said, “just go to a bar and see who looks like they might have some for sale.”  Hmmmm.  We weren’t sure about that option, but I wrote down “marijuana” on our to-do list, and the discussion moved on.

They handed us a prescription for nausea, just in case, and they said we should keep something on hand for diarrhea, which was often a side effect of the CPT-11, too.  At that, Dad perked up and chimed in, “I HOPE I have diarrhea!  Not being able to exercise in weeks is giving me the opposite problem!”  Everyone laughed.  The doctors encouraged Dad to avoid napping during the daytime and to exercise as much as he could “on the recumbent bike or just walking around the block.”  Mom, my sister, and I exchanged looks on that one – Dad had been struggling to get from the bedroom to the den and back a few times daily, using a walker and with someone right beside him for supervision, and so we couldn’t really even imagine him making a loop around the neighborhood.  “Just wait!” Doctor #1 said after he saw our exchange.  “I predict that by Monday he won’t even need the walker to walk.”  OK, sign us up!!

In the midst of the Q & A session, the nurse practitioner came back in and said she had spoken to Dad’s oncologist, who had told her that as far as he knew Avastin was not covered by Medicare for initially-diagnosed GBM, and, at $20,000 a pop, he didn’t want to order it for Dad until the financial end of things was cleared up.  After more back-and-forth on this, Doctor #2 left the room for a minute and then came back in and said, “I want him to get Avastin as soon as possible, and so let’s do it here, today.  Our financial secretary says that Medicare just started covering it for cases like this last week and that it shouldn’t be a problem, but if it is, our clinic will eat the costs for this dose of it and then your oncologist’s office can have the next two weeks to figure out how they are going to get it covered or paid for before you need it again.”  

Wow.  It took about 30 seconds for that to sink in, and then Mom, J, and I were in tears.  J said, “Thank you!!!  It’s my birthday, and this is the best birthday present I’ve ever gotten!”  There were smiles all around.

“You’ll need to stay in town another night just to be sure he doesn’t have any unexpected side effects.  The chemo lab has one opening left for today, and it’s in ten minutes.  Can you stay an extra night, and can you get him right upstairs?”  Um, does a bear live in the woods??

With all the commotion, Dad hadn’t really caught on to exactly what had transpired, and so I just gave it to him in a nutshell:  “You’re going right now to get the medicine that is really going to help you!”  

“Well, let’s go!” Dad said, and we were off to the chemo lab.  

By the time we got upstairs and had filled out the paperwork and then gotten called back to the chemo room, Dad was very anxious; he wasn’t sure what was happening and was very overwhelmed.  The nurse decided to give him a sedative as soon as he had been hooked up to the I.V., which she did in a flash.  She gave us some pamphlets and talked about possible side effects of the treatment.  “It's very likely that you will lose your hair,” she said somberly.  Dad perked up at the mention of that; he very animatedly said, “How soon will it come out?  I hate that I haven’t been able to get my head shaved lately, and I want my head to be completely smooth!”  The nurse said that was the first time any of her patients had actually gotten excited about the likelihood of going bald!

Just before Dad drifted off to sleep, he looked at me with wide eyes and said, “I know the doctor said this stuff is really expensive.  How am going to pay for it?”  I told him that he shouldn’t worry about it because his insurance would cover it, and, with half-closed eyes, he mumbled, “Thanks for the Medicare, Obama!”

While the toxic chemo and Avastin The Magic Bullet slowly dripped into Dad’s veins, he slept so deeply in the chemo recliner that he actually snored a little.  Huddled in the corner beside him, I conjured up thoughts of Pac-Man gobbling up the cancer cells (I’d read that this could be helpful and figured what the hell!).  Mom and J went back downstairs to meet with the social worker to learn about possible benefits and programs for which Dad might qualify.  The nurses bustled around busily, but the room was quiet.  The space felt sacred.  I focused on the high-dollar juice dripping from the bags on the IV pole and thought, “Bring on the Magic!”

Continued here … Part 21 - Erring on the Side of Hope