This story seeks to increase awareness and understanding of the unique needs of individuals diagnosed with life-changing illness or injury and their families by providing insight into the life of a man as he went through diagnosis and treatment of brain cancer (Glioblastoma Multiforme - or GBM).
I often wonder why it is that there are certain things about
a person that aren’t often fully realized or recognized until after that
person’s physical presence is gone.Do
we not see those things because we aren’t paying close enough attention?Do we not take the time to consider the value
of our interaction with and of the lessons learned from that person?Do we see it on some level and just not think
about it, articulate it, or appreciate it until we see that that’s all there
is? Is our view - or our awareness - shaped by loss, or experience, or both?
Thinking about all of that starts me thinking about the concept of rippling and about the intangible
things that a person can leave behind, often without even realizing he is doing
it.
I woke up with a raging headache and thought about my maternal grandfather; I remembered how he
used to rub my forehead and the area around my eyes tirelessly when I was with him and had
a headache. Every time I put sheets on a bed, I think about my maternal grandmother: she always put the flat
sheet on top in a face-down position so that the “good side” showed when she
pulled the top of it over the edge of the bedspread and folded it
over. I think about my paternal grandfather whenever I
see a man joyfully playing with young children; he was the king of the piggy back rides
when my sisters and I were little.And I think about my paternal grandmother when I notice that the bottle of Heinz ketchup is
almost empty; I often follow her example of making something out of almost nothing and use her recipe to use that last little bit of ketchup to make BBQ sauce
for chicken for my family.
And then there’s my dad, a man who taught me so much, most
of which he did inadvertently.Many of those lessons have become
seasoned with the shift of my perspective over the years; all of them are more valued by me than I can adequately explain. Some come from big events and big days in our lives, but most of them come from the in-between kind of days when we were just hanging out or just going about our everyday business.
I recently came across a video clip showing the different
ways that people reacted to a man whom they thought was homeless:
The whole piece is framed around the idea that the people
who reacted in a kind, compassionate manner were extraordinary – or even
heroic.Watching the clip, though, I
thought about what my dad would say about the people and the situation shown:
Why wouldn’t a person be friendly and try to help the homeless man? he’d say.In his eyes and, because of him,
in mine, the people who came to the aid of the man aren’t heroes and they
aren’t extraordinary – the things they did to help the guy are normal and
ordinary parts of human compassion.Those in the film who aren’t kind are the ones outside the norm; they are the ones who are remarkable, just not in a good way.
There are so many other lessons embedded in me from interaction with those in my past, and I am appreciative of every one of them. In return for all that has been given to me, I will continue to strive to pass on these lessons to others around me, on the difficult days, on the great days, and on the days in between.
At admission, Mom had provided the hospital staff with a copy of the medication log that we had been using for Dad at home with names, dosages, and dosage times for each of the dozen or so drugs that Dad had been prescribed. Several of these had been switched over to IV-form and added into the IV line; a few were brought in for Dad to take in pill-form as he had been at home, which was a problem because he could barely swallow. Even after a phone call to the oncologist’s nurse and discussion with the nursing staff at the hospital, I was still concerned about the expectation that he could effectively and safely swallow pills and because some of the dosages being administered didn’t match what he’d been taking.
When the oncologist came to see Dad on the oncology floor mid-morning after Dad had been admitted, he rewrote the medication administration orders. He looked at Dad and said that, although he felt it was unlikely that the cancer had advanced at this point given the treatment protocol Dad was on, we couldn’t be sure about anything until we could get an MRI, which he felt wouldn’t be possible for at least another day or two due to Dad’s decreased level of alertness and his pain level.
His main plan seemed to be waiting to figure out what the plan was, which, as the family of any cancer patient knows, is NOT a good plan at all. Delays are Enemy #1 when dealing with an aggressive cancer like Glioblastoma, but, until we knew more about what had caused Dad to decline so rapidly in such a short period of time, waiting was really all we could do.
The oncologist told us that in addition to a blood transfusion and platelets that he was considering ordering to boost Dad’s blood count, he also wanted Dad to get a medication called Neupogen, which is a growth factor that stimulates the production and activation of neutrophils, a type of white blood cell. At the mention of the drug, an alarm went off in my head, and, upon quickly reviewing notes in the Notebook, I saw that Neupogen was listed on the treatment protocol that Dad was on from Duke under Things To Avoid. On the paperwork we’d been given at the Brain Tumor Clinic, I had scribbled a note out to the side that read, “As a growth factor, admin of this rx – potentially counteractive to Avastin.” I showed the info to the oncologist who looked perplexed; evidently, he did not already have this information, even though he had used Avastin to treat other patients before Dad.
The next move was for the oncologist to consult with the neuro-oncologists at Duke who had authored the protocol; our guy said he would get right on that and get back to us on the Neupogen. “We need to get his blood counts back up,” he said as he left the room, “and then he will get exponentially better.”
Dad had had an appointment to get a monitoring-type of MRI that very afternoon and had been scheduled to get Avastin and chemo the next day, and I was filled with disappointment that our plans had had to change. Thinking that we could get some GOOD news for a change, I’d been so focused on getting that follow-up MRI, despite the fact that I, like Dad and like the rest of my family, had developed a raging case of Scanxiety. Now that he was too sick to even get an MRI (and considering the fact that when he did get one it would be to check for problems instead of monitoring for progress), I saw that I should have been grateful for him have the chance to get the scan instead of the alternative, but, as usual, that was all only seen in hindsight. Now, instead of at least having a Plan, we were left with only a cancelled plan and confusion.
And fear. Dad was so weak at this point that he couldn’t lift his head from the pillow, couldn’t suck liquids from a straw, and could barely talk loudly enough for us to hear. He had a deep cough, and the coughing exhausted him and made his throat and chest hurt. When asked, he reported that he had a headache “in the middle” or “in the top” of his head ("seven or seven and a half out of ten" on the pain scale, he said), which of course made us think that the cancer had spread despite the oncologist’s prediction.
For the rest of that day, Dad was in and out of a medicated fog, on a heart monitor, with multiple IV lines going, and getting oxygen through a tube in his nose. In getting him settled in the hospital bed after he was admitted, the nurse had discovered a pressure sore the size of a pencil eraser on his low back. A wound care team consult was ordered, and this area was cleaned, treated, and dressed; Dad later told us that that sore hurt almost as much as his head had been hurting, another dire consequence of an impaired immune system. By late afternoon, the Infectious Disease team had ruled out viral meningitis, and over the next 48 hours cultures were going to be grown in the lab to test for bacterial or fungal meningitis, pneumonia, and other types of infection.
As hard as it had been to get through the stressful, sleepless nights since Dad’s diagnosis, that was nothing in comparison to the first night of the second time Dad hospitalized: it was the first night that I thought that it was entirely possible that Dad wouldn’t survive, not just the cancer but the night. We were lucky enough to have our case assigned that night to a nurse named Meredith, who provided exceptional quality of care for Dad and who took Dad and my family under her wing, even requesting to have Dad as her patient on other shifts she worked while we were on her floor. She provided highly commendable care for Dad and for us; she seemed to see not just Dad but those of us caring for him as her patients, and she gave us not only the physical support we needed but some much-needed emotional support as well. As my sister later said, Meredith appeared to see Dad through our eyes, and that is something that was so significant to us and that we will always remember.
Even in the haze of the pain and the pain medications, Dad strived to be appreciative and polite. With his throat incredibly sore, he offered a husky “Hello!” to the woman who came in to empty the trash can in the room, and he gave a gravely “Thank you!” whenever one of us used a finger to hold liquid in a straw and then release it in his mouth or when we put chapstick on his cracked lips. He, of course, took an instant liking to Meredith, as did we. She bore a resemblance to one of my sister’s best friends from high school, a girl named Angie. Despite the fact that Dad hadn’t seen Angie in many years, he too noticed the similarity in Meredith’s appearance and started calling her Angie, which Meredith said she took as a compliment. “I feel like I’ve known you for a long time, too!” she told Dad, which made him smile and warmed our hearts.
Not long into her shift, Meredith said she had orders to administer Neupogen; I relayed my concerns and the earlier discussion with the oncologist to her, and she put a call in to the doctor to verify the orders. Contrary to his earlier commitment to “get back” to us on the issue, the oncologist hadn’t communicated with us at all on the Neupogen verdict, but over the phone he told Meredith that he had consulted with the doctors at Duke and they had agreed that the priority was to boost Dad’s blood counts and thus the drug should be given. This was the first of many points of confusion and miscommunication (or non-communication) in Dad’s care, but, like the rest of the family, I was grateful that the medicine was being given despite the way we’d found out about it because I was desperate to find something that could help Dad get through what I saw as a bump in the road, even if it took altering the protocol or the plan to do that.
Over the course of the next several days, I worried a lot about how and when Dad could get the next dose of chemo/Avastin; I made fervent notes in the notebook about it in between the times the oncologist came by to check on Dad. When I asked about when Dad could get it again, the oncologist said we needed to get Dad stabilized, and then he added, “Avastin has a three-week shelf life, and it’s only been two weeks since he’s had it, so we aren’t losing ground if we can get it in him within the next week.”
I wanted that Avastin for Dad like I was an addict on a street corner. I was like a boxer warming up before going into the ring, punching the air and wearing a super-tough look on his face. Maybe even growling a little: Here we come, Cancer, and we’re going to kick your ass! But I was wrong. The cancer, the treatment, the illness didn’t even give us a chance to step into the ring. We were so tired of Cancer and of tears and terror; we needed some Good News, but, other than the fact that Dad was still in the game at this point, there were none to be had. Cancer could wreak havoc on Dad’s body, but it couldn’t touch our love.
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.
Dad, with a few of his favorite things - Foster, the newspaper, and a Sonic Diet Coke - December 2010
As we began what would become a very difficult, yet not-long-enough, December, my family prepared to batten down the hatches while we continued to wait for a sign of improvement in Dad’s condition. Because of Dad’s continuing severe headaches, the local oncologist had said that he wanted to wait until after the second round of chemo and Avastin to begin tapering the steroids, which unfortunately meant a continuation of the sleepless nights and the other side effects like massive heartburn, sugar cravings, and brittle, rolling veins which were an issue whenever blood was taken. Whatever it takes, though, we thought, and we pressed forward.
Dad’s memory and reasoning continued to be affected, although what he would “get” and what he wouldn’t were sometimes difficult to predict. We bought a dry-erase board and wrote notes and the daily schedule on it; like a shadow, it moved with him to wherever he was in the house in an attempt to help orient him and to decrease his anxiety and confusion. Its usefulness was limited, though - sometimes he didn’t realize that he had forgotten something or that he wasn’t aware of something that he needed to know and so he didn’t think he needed to check the board, and other times he knew he wasn’t thinking clearly but he forgot to refer to the board for support. Ironically much like the training plans Dad had always written out for himself as he was in training for one race or another before he'd gotten sick were the words the were always written at the bottom of the board: “Recovery Plan: eat, sleep, and exercise well everyday.” The sleeping was pretty much out of Dad’s (and our) control, but we wanted him to give it his all to try to eat healthy (instead of the junk food the steroids were making him crave, and later instead of not eating much at all) and to exercise, a very strange set of reminders for he who had worked to do both every day of his life. (Side note: also ironically and sadly, none of those of us caring for Dad were following those three rules at the time either, because we were so consumed with trying to meet his needs!)
Oddly because Dad had always been such a "morning person" and so motivated to "get up and go," each day typically began with the necessary prompts and encouragement for Dad to get out of bed mid-morning, which seemed to be the only time he did actually sleep well – and that was because most often he had to be given a pain pill in the middle of the night which took awhile to kick in. Home health therapists came in and out of the house throughout the day; it was of great frustration that they did not seem to coordinate with each otheratall and that they appeared not to even consider the sleepless nights that were going on at my parents’ house or the desperate need for routine for Dad and Mom and those of us who were there to support them. As with the therapy staff at the hospital and at rehab, it soon became apparent that they had little to no experience with working with patients with brain tumors; they tended to treat him more like a patient who'd had a stroke, and those two things are vastly different.
One day the PT came at 8 a.m. (an hour after Dad had finally gotten to sleep from the night before!), the OT came at 11:30, and the Speech Therapist came at 3:00, thus thwarting any type of bid for a nap or for venturing to Sonic for a large Diet Coke, Dad’s main pleasure for the day on many days. The next day, the therapies were at 9:30, 1:00, and 4:00. There were lots of last-minute schedule adjustments and some cancellations by the therapists, too. The only consistency from the home health agency was the inconsistency. Therapy was hard for Dad; he wasn’t the Road Warrior/gym rat that he had been for 50 years before. He tried to get on the recumbent bike for some extra exercise some days, but mostly he just tried to tolerate the sporadic visits of the therapists and a select few other people who stopped by as he fought off exhaustion.
The nighttime routine went like this: around 8 p.m., Dad started to comment about being ready for bed from his position in the recliner; every day was a very hard day for him, plus he really couldn’t sustain his attention long enough to watch TV or read and so he was, in short, bored and frustrated. On the nights when we would help him to bed that early, he tended to fall asleep for an hour or two and then be up for the night, often with a severe headache and sometimes with awful heartburn too. Most nights, we would try to keep him up longer and attempt to get him to eat a healthy snack so that he could have something in his stomach and stay up until at least 10:00 p.m., at which time he would make it to the bed, where he would put on his reading glasses, prop up in the bed with pillows, and try in vain to read. He seemed to alternate between a Lance Armstrong book, the December issue of Triathlete magazine (“I doubt it’s going to be my ‘best season ever,’” he said every time he looked at the cover of that edition), and a binder of info on brain cancer that I had put together for him, complete with highlighted sections about nutrition and exercise and articles about how effective Avastin was in treating GBM.
When the 20 minute-long period of reading/re-reading concluded, Dad started demanding that Mom go to bed, too. When she did, he was typically super-chatty for a couple of hours, and then he always asked The Nighttime Question: “We’re going to beat this thing, right?”
As unaware (and therefore unconcerned) as Dad usually seemed about the gravity of his condition (a good thing in our eyes at the time, although looking back I see that it should have been more concerning than comforting to us), he did seem to know on some level what was going on with his health. Obviously, things weren't great – he had gone from being able to bike 100 miles over rolling hills as part of a moderately easy workout day to not being able to ride more than 10 minutes on a recumbent bicycle in his dining room, not to mention the whole can't work/can't drive thing. Of course, Mom always responded to The Nighttime Question with a resounding, very confident, “YES!” and then crossed her fingers that he would be able to relax enough to sleep some over the next few hours, which he most often did not.
On the nights that one of my sisters or I slept on the couch in the next room for back-up support, almost every time, there was a need for a tag-team effort around 2:00-3:00 a.m., at which time Mom went to the couch or the guest room to get a few hours of sleep and the back-up person joined Dad for the late night shift. Anxiety was a challenging bedfellow, and, when coupled with a bad headache or that stupid heartburn, Dad was up for the count. If Mom or one of us dozed for a few minutes or even just stopped talking for a brief period of time in effort to get Dad to settle down so that he could sleep, he often called out into the dark, “Hello?? Is anybody even here?” Nope, there wasn’t much sleeping going on for any of us.
Some of the late-night conversations were, perhaps oddly, enjoyable. Others were about dreams and thoughts that Dad had, most of which were on the darker side. Many were just discussions about memories of the past, intertwined with fear and worry in the present and hope (desperation) for the future. Dad was the most optimistic person I had ever known, and it was one of my main goals at the time to foster that in him, to protect him from knowing all of the cold, hard, ugly, sucky truth. I believed in the power of belief, and of that we had just enough to get us through the day (and the night).
Something that started while Dad was in rehab and continued to increase in the month of December was Dad’s frustration level that resulted in intermittent flashes of anger. He was the most easy-going person I knew, pre-cancer, but the combination of sleeplessness, anxiety, headaches, indignity from the lack of independence and privacy, and – last but not least – the rage that is normally seen after a frontal-lobe brain injury, not to mention the emotions seen in people on high-dose steroids as he was, were a tough combination to overcome. Depression and Anger were not welcomed guests; they invited themselves over just as the cancer had, and all we could do was try to explain things to Dad and to ourselves and to hold onto every ounce of compassion, understanding, patience, and love for this man that was our hero. He wanted his life back – hell, he just wanted to have some privacy and to be able to sleep. We wanted that, too, and so much more for him.
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.
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.
My middle sister spent the night with Dad at the rehab facility the night before he was to be discharged; Dad was very anxious and antsy, as he put it, "to get the show on the road." When Mom arrived the next morning, she and my sister took turns loading the car, supervising Dad, and getting the last-minute discharge papers and instructions. The amount of stuff that had been amassed over the 20-day stay was incredible. Excitement (and fatigue) was in the air as they took off down the road for the 45-minute drive home.
As I’ve mentioned, some necessary changes had been made to my parents’ house over the past month while Dad had been away. My brother-in-law and my husband had mounted safety bars in two bathrooms and had re-arranged the furniture in the den including removing or taping down rugs for smoother transitions. I had taped reminder notes for Dad around the house; for example, one on the door from the garage into the house said “UP with RIGHT LEG FIRST” to indicate how he should safely get up the single step into the house on the walker. Dad pretty much barreled in; he literally couldn't wait to get settled in his favorite recliner in the den with the newspaper and a Foster’s.
Dad had a headache pretty much all the time at this point; he would occasionally mention it, but generally he only admitted that he was in pain when he was directly asked. He was on some pretty strong pain medication that we had been told would make him drowsy, but we noticed that it actually hyped him up most of the time, although at the same time it didn't cut through the constant exhaustion that followed him around.
My husband, my daughters, and I drove from out of town to join my parents and my sister and her daughters before suppertime that day. I remember thinking that everything looked so normal on the surface when we walked in the door of my parents’ house. As I cut off the hospital bracelet still on Dad’s wrist, I held back tears of gratitude that he was home and silently made a wish that he would never have to wear one again.
The physical therapist at the rehab center had suggested that we get a recumbent bike for Dad at home, and so we bought a slightly-used one and set it up in the dining room. “I’m so ready to get back on the bike!” Dad said, although he begged off when we asked if he wanted to try it right then. As I watched him give it his all to go from the den to the bedroom on his walker, it hit me that Dad might possibly never be able to go upstairs in his own house again. That was an easy enough bargain, though, I thought, as long as he could start feeling better and get some better quality of life on the ground level. To accommodate all of the spend-the-night guests there, we rearranged Dad’s upstairs office into a makeshift bedroom. We moved things around just a little that day, just as our ideas for our family’s future were shifting a little at a time.
Spaghetti was served for supper that night, but Dad said he wasn’t hungry; he ate only some of what was put in front of him and then later that night kept asking his granddaughters to please bring him “just a little piece of chocolate,” which they delighted in doing, over and over, per his request. He was glad to have my husband join him in having a beer after supper (we allowed him two beers that day - it was a special occasion!). Sitting at the kitchen table pouring over the discharge instructions from the rehab facility,I created a checklist listing all medicines, their dosages, and at what time each was to be taken each day, and I felt like I actually had some control over what was going on for the first time since Dad had gotten sick.
On Saturday morning, Dad’s long-awaited reward arrived: Foster the Cat! Foster took a couple of laps around the house to investigate and then settled in on Dad’s lap. He seemed to instinctively understand that he was Dad's cat, and Dad was his person. He didn’t seem to mind the two greyhounds at all and was quite content with his new home. Dad said, “This cat is so adorable! He’s perfect!” The kids picked out an orange and blue cat collar and other necessary feline supplies at the store. When they showed Dad the collar, for some reason he thought it was a bracelet for him, and he said, “Thanks! Auburn colors!” and then proceeded to wear it for the next few days.
On Saturday afternoon, the home health nurse came to do an assessment to determine if Dad would get therapy and/or nursing support at home. Mom and I sat with her at the kitchen table and answered questions and filled out paperwork while my sister and the kids entertained (and supervised) Dad, who greeted the nurse when she came in but seemed either unaware or uninterested in the reason for her visit. When she asked Dad about his pain level, and he told her, “I feel pretty good!” despite the fact that he had rated his headache pain at a 5 or 6 out of 10 since he had gotten home.
Several times that day, Dad said he wanted to go to the bedroom and lie down. Sleep continued to elude him, and he was constantly tired. When he was in the den in the middle of all the action, he seemed distracted and overloaded. “Sorry, but there are too many people in the room for me,” he said at one point. We wanted him to be in the middle of the conversation like he typically would be, but we helped him into the bedroom for some quiet time, although at least one of us kept an eye on him all the time for safety reasons.
Dad, on his first full day home from rehab,
relaxing with Foster the Cat and Buddy the Dog (Note the "bracelet" Dad is wearing.)
In between the welcome-home festivities and the road trip preparations, we took turns visiting my grandmother at the nursing home. Like we had done as much as possible since Dad had gotten sick, we reported back to him about what was going on with Grandmom. He was very worried about his mom and was concerned that she might be upset that he hadn’t been to see her over the past month. We assured him that she was ok and that she didn't seem to realize how much time had gone by since he was last there. Even though my parents’ house and the nursing home were only about ten miles apart, it seemed like they were in two different worlds. We had decided early on in Dad’s illness not to tell Grandmom about Dad’s sickness; she was very confused, and we felt that as long as we were able to continue to visit her and to make sure she was well cared for, she was better off not having to know about Dad’s health. When I stopped by the nurses’ station at the nursing home, the staff members there were visibly shocked when I told them that Dad had cancer. “That bald guy has cancer?” one of the nursing assistants said incredulously. “He looks so healthy, and he’s always so energetic and cheerful!” They promised to keep a careful watch on Grandmom and to make a note in her chart about the new chain-of-command of phone numbers should they need to call us about anything.
A birthday celebration for Mom
Sunday was Mom’s birthday; Dad had told me a few days before that he thought he remembered buying her a ring for her birthday before he got sick, but he couldn’t remember where he’d put it, if he had indeed made the purchase. “Maybe I just dreamed that I bought it, or maybe I just meant to do it and then I ran out of time,” he said. He told us to get money out of his wallet and buy her something on his behalf, and so we bought her a spa gift certificate from him and we celebrated the best that we could, grateful to be together as a family and happy that Dad was home.
That afternoon and evening, armed with our Notebook filled with questions to ask at the Brain Tumor Clinic at Duke, we packed and prepared for our journey to Durham, NC. The Notebook served as kind of a coat of armor for us; I felt a little better just carrying it around with me. Our lists were organized by topic; we had one or more pages filled with things to find out about under the categories like “Genetic Approaches,” “Holistic Treatment Options,” “Clinical Trial Options,” “Prognostic Indicators,” and “Off-label Medication Treatments.” Between us, we had done hundreds of hours of reading about possible treatments for this type of Brain Cancer over the past four weeks. We were as fully invested as we could be, and this was a fight we intended to win. I wrote on the cover of the Notebook: Our goal is to give Dad full access to the best new treatments, in optimum combinations, as quickly as possible, to support him in quality time for as long as possible.
My middle sister, my mom, and I went to bed soon after Dad that night (clarification: he was already in bed fretting about not being able to sleep, again, and we agreed to take turns sitting up with him throughout the night). We felt like warriors, on a quest for the best weapons we could get our hands on as we marched into battle.
