Thursday, December 8, 2011

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.   

Wednesday, December 7, 2011

Part 22 - Bumps In The Road

Continued from Part 21 

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

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

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

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

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

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

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