We are in Florida… Dad is sick… Dad is dying… This is not an abstract concept… it is the reality that we are dealing with… not always well.
It was unexpected.
We knew something was wrong last Friday… We didn’t know what was wrong, but something was wrong… we worried… we needed to be there… but of course things were complicated… we were in New Orleans…
We were in touch with Dad daily… he entered the hospital on Monday… he said it was nothing… our adopted big brother (Vic) had called to tell us Dad was in the hospital… he is our spy… our tattle tail… Dad knows… Dad accepts that this is needed… All seems OK early in the week… but by Friday, we aren’t sure… Vic isn’t sure…
We are in New Orleans for a convention… Rotary… a party… a good party… we arrive early to have a dinner with friends… to do a service project… to have another dinner with friends… now we are planning something else…
Friday, late, we decide… We have to can the party, bug out and go to Florida… Something isn’t right with Dad. Saturday was spent making arraignments… (Tina making arraignments) new air line flights… (Thank you Delta… you acknowledged our emergency and waived fees… You make it easy on us… It cost us $10.00 to re-write two tickets… thank you Delta… We like Delta… Fly Delta… we do…) We rented a car… to be picked up early on Sunday… We made arraignments to leave our hotel, our pre-paid room early…
Arraignments being made we went to lunch… If you are in New Orleans, and you are in the Warehouse district at lunch time, (we haven’t tried dinner… we expect it would be good too) and you are hungry… you have a puckish… go to Beast… We did the price fix lunch… we were beyond pleased… if it wasn’t so God Damn hot and humid in the New Orleans we might move there and eat at Beast every day… really…
We haunted the “House of Friendship” at the Convention… It opens a day before everything else… we packed… we went in search of dinner… ( this is New Orleans… if you are not planning your next meal you are probably dead….) Our next meal was at an early dinner at the Acme Oyster House… beer, oysters, beer, por’boys… all good…
Back, pack, to bed too early… up too early… cab to rental car… on Canal… then only three turns to take us from New Orleans to Brooksville FL…
We see Dad late Sunday… (this is Florida.. the land of the early bird special… late is 6:00 pm) He is weak, in pain, but in good spirits.. He looks better than we feared, but instead of the independent soul that I spent two weeks with in March, he is now bedridden and weak… but in good spirits… We visit… we head for the house, his house, sprits lifted… we go to bed and sleep… until…
The next morning… we wake and get ready to go visit… he calls… his doctor had visited… it is Cancer… cancer with a big “C”
Our world and sense of time changes…
We rush to the hospital… he is trying to be brave… we are hopeful… but it is not good.
We hold his had… he is scared, preparing do die… two friends have died within a week of a cancer diagnosis…. This hangs heavy on his mind… We call the Dr… which Dr… he has no less than 6… a GP, an Oncologist… an ear, throat, and nose, a cardiologist… an infectious disease specialist … a pain specialist… Over time we realize there are at least tow of each… most don’t talk to each other… it is an issue… a structural issue… our role is to hold his hand and keep the Dr’s on the same page… herding Dr’s is a lot like herding cats… I have done each (I have also herded goats… but that is a different story… which results in Dr stories but that isn’t this story)
Dad is in pain… they give him an oral pain drug... on request they give him an intravenous pain drug… a variation on morphine… this is serious… after each injection he goes to sleep… for hours…
Monday Dad is depressed… but late Monday we talk to his GP… he is optimistic.. Lymphoma is curable… it is “cook book medicine”… we call Vic… we return to the hospital and tell Dad… things are looking like it might not be the end of the world… of course, we were wrong…
Now, its now Saturday night… 2:00 am… I am walking the dog… along a dirt road in rural Florida… Sugar sand… oaks full of Spanish moss… a sky full of stars… not the dark sky with bright stars of the west… but a starry sky none the less… I don’t really want to sleep… I return to the house and blog… and drink… currently I am drinking brandy… I found it in a closet… Dad won’t miss it… he won’t be back… strangely I am not drunk or close to it… or even slightly anesthetized…
Back to Tuesday… the day after Monday… Tina and I got up early Tuesday… before dawn… we had a mission… the Dr’s did their rounds early… by 7:00 or maybe earlier (in our experience, never earlier, but we had to be prepared, we had to be there)
We drove to the hospital… in the dark… via Starbucks… for coffee, for fortification, for a transition from sleep to asking questions and holding Dad’s hand… We march in… the night nurse (from the night before) is still on duty… Eventually Dad stirs… the Dr’s visit… we ask questions… (were they the right questions… did they give us the right answers… we don’t know) We meet with the GP… we meet with the Oncologist… we meet the pain specialist… I take notes… names and telephone numbers… notes about drugs… I draw happy faces and un-happy faces by Dr’s names… mostly happy faces… with the information we have we plan for Chemo… but Dad is pulling back… maybe its time to die… we talk about what Chemo would look like… what outcome could be expected (there are odds… his are about 56% in his favor based on what we know… of course this isn’t a horse race… its Dad…)
Tina and I realize that we have only been here a couple of days but is seems like a week… maybe Einstein’s theory of relativity is in play… Time is not linear… it is affected buy outside forces… and for us… time is slowing down… or speeding up… randomly… based on outside forces… and we don’t have a clue… we have slipped down the rabbit’s hole and are on a strange journey… By Tuesday Tina and I have a plan… Chemo… rehab… chemo… this is survivable (at least in our minds….) Dad is less convinced and more scared… in retrospect… his is a more realistic view…
Tuesday we discuss the treatment… Dad agrees… maybe… maybe not… by 10:00 we withhold water and food waiting for the “port” to be put in… the “port” is a cattier with a injectable pad inserted under the skin…. Surgically (hence no water or food)… and Dad hasn’t been eating for a week… and now no alternate food (Ensure) or water, and he is suffering… When my brother calls he says goodbye, I love you… he tells us too… he is considering his future…
Then late in the afternoon they wave off the surgery… and now need a scan of the abdomen… with a fluid… a thick nasty fluid that Dad has to drink… we get most of two glasses (in reality Styrofoam cups) down… he waits for the scan… eventually, late at night they take him away for the scan and T and I head home…We are tired… It will become a ongoing theme…. Dad is depressed… very depressed… we discuss the “no resuscitate” order with the nurses… we don’t know if he will be alive tomorrow when we get here… before 7:00 in the morning… of course we get a call late with questions… he wants water… is water ok? There is a no resuscitate order on file… do we mean it… (yes) It seems like another week has gone by…
Wednesday, up early (again) We want Chemo… Dad is not sure… they give him his IV pain medicine… He is sleeping when the Dr’s arrive… We explain his concerns… they need to wake him to get consent… He consents after we ask him too… we agree to one round of chemo… if that doesn’t work we are done… He buys in reluctantly… We rejoice.
By noon he has the port… by 2:00 they are starting Chemo… first drugs to make you tolerate chemo… then chemo drugs… then more chemo drugs… He is asleep… not couscous… Did we do the right thing?… we hope so… we tell ourselves so…
Finally, for me… 3:00 am Sunday morning… I am not sleepy but instead tired, still not drunk, no mater how hard I try… time for bed… I guess… I am not sure about anything…
Next morning… the sun is up… I am up early… coffees on… We head to the hospital before light… Dad is still dying… back to the story…
Wednesday morning he got the port… it is quick minor surgery… if you are normal and strong… he has no strength, no reserve… it goes well, but he is drugged, not home… maybe for the best… They give him Benadryl before Chemo… both as a sedative, but also to prevent an allergic reaction… he sleeps… soundly… Dan, Tina and I go to lunch while he is sleeping… we stop at the rehab hospital… we stop at the local hospice office… Dan is having trouble thinking about it… Tina takes him back to the hospital… then comes back for me.
Wednesday afternoon Tina and I meet with the funeral home… the same home that took care of Mom… I sign forms to have him picked up and cremated when the time comes… it is coming fast… and write a check… He wanted us to… he asked us to… but this is strange and real…
Thursday up early again… Dr’s again… Dad gets the second round of chemo… he is heavily drugged and not home… when he occasionally wakes he doesn’t make much sense… Mid day my brother Dan arrives… Dad looks better than he expects, but isn’t very communicative or rational… It is not a good day… Dan spends the night in Dad’s room with him…
Friday, up early again… the Starbucks folks know us by now… we add a Breve for Dan to our order… we arrive… Dad is more awake… the Dr’s come… His oncologist has bad news… genetic tests on the cancer have come in… it is not good… it is Becket’s Lymphoma… the nastiest fastest growing kind… for Dad, it is not survivable… By noon we have met with Hospice again… we change our plans… instead of the rehab hospital we will move to the Hospice center… We are admitting defeat and instead negotiating for a honorable surrender. Life sucks.
Dad asks to see his friend Vic… Vic is the other brother… he needs to talk to Vic about what to do with the pigeons… he needs to talk. He is worried about the dog and cat too… We just adopted a dog and cat… That calms him…
The transport him a little after 3:00… to the hospice… to the place he will die…
The difference is significant… the hospice is quiet and calm… everything the hospital was not… everything at the hospital made noise… from the blood pressure machine to the IV pump to the elevator just across the hall to the fire alarms that they keep testing. One blood pressure machine sounded like a east LA taco truck…
The hospice is quiet, peaceful…
It may have been the hospice… it may have been the recovery from the drugs used during surgery and chemo, but Dad perks up… he is more lucid… He is still sleeping more than the average geriatric house cat… but when he stirs he is more lucid… better able to tell us what he what us to do…
Late, about dark, Tina and I go home… Dan stays in Dad’s room again…
Saturday… not as early… Doctors don’t do early morning rounds at hospice… T and I sleep a bit later… We bring Dan a Breve… Dad is doing better… more awake… eating a bit (a little bit… not much) He is watching TV again… He is much happier.. calmer…
We bring Brandy the dog… she sleeps on Dad’s bed… Things are better… as good as they can be when you are dying…
We go back to the house late… I have to make a decision… I need to go back to work... do I go now, then come back or wait here for the inevitable. Unless something changes drastically, I elect to go… Tina will stay… Tina can work remotely… Penni arrives tomorrow
That evening I can’t sleep… I pack… I am not sleepy… instead I rummage through stuff in the office… through the mail… I find keys, keys to the pigeon loft, to the side gate, to the garage… keys we need… I throw away 1996 National Geographic magazines and Consumer Reports from last year… I find things… my high school diploma… my brother’s high school diploma… my father’s high school diploma… I write letters to the pool guy, the gardener… I pay bills and set others aside to pay… I make lists of phone numbers… I drink the last of Mom’s scotch…
I wake at 7:00… up, shower… I make coffee… Tina awakes and showers… I load the car with my stuff. Dad is doing well… he is interested in Indy… looking forward to something… this is good.
I need to bug out for the airport and my flight back… It will be hard to say goodbye.
