‘Lisa, who are you calling?’
It was two a.m. I woke up to the unmistakable sound of a phone number being punched into a phone.
‘Micheal. He’s not home.’
Lisa had forgotten again that Michael wasn’t coming home. He had died ten days before. It was exceptionally poor timing as he left behind my friend, Lisa who is diagnosed with Stage IV Lymphoma.
I explained to her that he would not be answering and that it was time to get some rest. Meds or fatigue made her uncharacteristically compliant; for 30 minutes.
At 2:30 a.m. it occurred to her that she could not wait even one more day before cleaning out her purse which involved a dumping carry-all the size of an overnight bag over the bed and then systematically replacing everything slowly.
When the purse met her satisfaction, she was in pain. I got up to get her pain medication and thought she might rest but the thought of a PET scan in the morning had her wired. She showered at 4:00. Lisa is on continuous oxygen and my best guess is that it will be a long time before she can hop in and out of the shower quietly so the rest of the house can sleep through her nightly ablutions.
I got up around six after not sleeping most of the night. We made our way an hour north to Tampa for her PET scan. I take my hat off to Moffitt Cancer Center for the kindness and efficiency incorporated into their well oiled operations. But, when it comes to care outside of the hospital, they, like every other healthcare provider fall short.
What I want to know is who has a teaching guide for purse maintenance etiquette? Who knows how to shut off the water supply between 11P and 7A? Before you shoot over a teaching guide about anxiety and grief, etc., be very much aware that I know why Lisa is obsessed with the little things at the expense of my sleep (and hers). I want to know the ‘how‘.
Lisa’s story is tragic and dramatic but not unusual. The details change but she is one of thousands who are left with no caregiver for one reason or another in a time when she needs one the most. Michael had hired someone to clean her house and take care of her and that person didn’t work out. Again, wouldn’t it be sweet if a paid caregiver not working out was an unusual story? Now that he is gone and his estate is being settled, she has no access to money at all so hiring a replacement is out.
Lisa, like so very many others, would benefit from the care that hospice has to offer. The problem is that Lisa’s Lymphoma is responding to treatment. She would not be eligible for the hospice benefit unless she elected to die. How ’bout dem beans?
So, I am here along with my son for a while so Lisa’s Mom – in her 70’s – can get some rest.
Now that things have settled down after Mike’s service over the weekend, it’s actually kind of fun being here with an old friend who is near and dear to my heart. She alternates between being lucid and funny and not so clear and hysterical. She cries a lot and I offer canned platitudes because all my original thoughts have been used up and then she is better. She is tough and she will get through this. Now that I have slept, I think I might get through this, too.
Maybe the most important lesson to be learned from this is that friends are even more special when you get to hold their pain meds. The second most important lesson to be learned is that healthcare involves a whole lot more than payor sources.
“It’s official,” Lisa announced when she returned from the doctor yesterday. “I’m officially dying.”
Technically, that may not be true but realistically, well, it’s the only sane course of action for a 40 year old mother of two to take. All the known drugs for Lymphoma have failed and the only options are to try a new drug with a side effect profile described by her doctor as ‘sharply limiting the quality of life’ or trying to control it with older drugs.
The doctor made sure that Lisa had plenty of information on Advanced Directives and little brochures on how to tell her kids before she left.
Hospices, pay attention.
Do not now, or ever, call a patient and tell them that the physician has yet to send over the paperwork for their referral until you are certain the patient has expressed an interest in hospice. Apparently someone at the hospice had been given the heads up on a possible referral before Lisa learned that her current chemotherapy was not working. Calling someone to set up a hospice information visit before they learn that hospice is a viable option is right up there with breaking up with someone via text message. Show some class, y’all.
When Lisa returned from the doctor yesterday and told us the news, we all just sort of stood around looking at each other. My son, her mother and I all seemed to take on the weight of the world. I understand that people don’t always get what they want but that’s other people; not me. Here was something that hard work, fairness, passion and drive could not fix. Or maybe, our prayers have been answered. Maybe everything that we do not know about death would make us laugh at our fears if we knew the details.
We followed the only course of action that made any sense. We found a Tiki Bar on the beach; The Bearded Clam. We had dinner and talked about her daughter’s poor choice in hair colour and listened to Brian tell us stories of his work in the film industry. I took pictures. We all came to the conclusion that anyone who doesn’t try to fill their days with value and memories is a fool.
Later, I was working on her computer in the office and found a note that Mike had written to her on her birthday.
It’s your birthday. To you that might mean another year of growing older.
To me it is another year that we have been able to laugh, cry and hold and kiss each other.
You are as beautiful now as you have ever been and I cherish you and that huge heart of yours.
I will be looking forward to your next year’s birthday and the ones that follow for the rest of our time here.
I Love You and Happy Birthday,
Thank God he did not wait until Next Year’s Birthday to celebrate his life with Lisa.
March 9, 2015
I had no idea that it would be necessary to provide an etiquette lesson on how to behave after the death of someone. Sadly, it’s true.
DO call ahead of your visit. A death and the flurry of activities surrounding it are exhausting. Plus, nobody looks good after they have been crying. Show some respect.
DO send food. The mourners may have someone like me visiting to keep things in order.
DON’T attempt to force feed the grieving.
DO shut up, periodically. People have no earthly idea how valuable they are. Your presence is often enough.
DO allow the grieving party to set the tone. Death and whimsy are not mutually exclusive but both require impeccable timing.
DON’T let yourself in the house without an invitation, rummage through personal belongings or stake a claim to the property of the deceased.
DO be sensitive to the needs of the survivors. Flowers are nice but when younger people die, assets and income can be compromised for a long time. A paid water bill does not smell as pretty as a spray of flowers but you can’t rely on gardenias to get you clean in the evening.
DON’T fulfill your social obligations by attending the funeral and go on about your life. The days following the death of a loved one are filled for the survivors with death related tasks (DRT’s) and then the screaming silence of emptiness.
DO mark your calendars at periodic intervals for 13 months after the death. Call or visit on these dates. The one year anniversary is particularly hard so continue your calls until the end of month 13.
DON’T be afraid of saying something stupid. It gives the survivors something to laugh about later.
DO write stuff down. Anxiety and exhaustion can cause serious memory problems; not just for visiting friends but also the people suffering the loss.
DO offer to do more mundane tasks such as dishwashing, housekeeping and lawn work.
DO share your grief but don’t get carried away to the point where the grieving survivors are having to offer you comfort.
DO remember the value of handwritten correspondence during the 13 months. A shared memory may be very welcome on some lonely days or distracting on others. Handwritten correspondence can be set aside until it is welcome.
DO check the date. It’s 2015. An occasional text or email message may be the best you can manage on some days. Classy? I think not. Important? Only if you think it is important to let someone know you care.
DON’T ask what you can do. Rather, ask if you can do specific tasks such as pick up kids, go to the store, etc. Don’t even ask when it comes to things like sweeping the kitchen floor or front porch. Find the broom and fly.
March 10, 2015
The Cancer Casino
Hope is a funny thing. It sustains life in the most dire of circumstances. Then hope turns to gambling. It’s here where the supercharged adrenaline rush of winning can only be balanced by losing it all. When you take a gamble on a new chemo drug or study, the stakes are high. There are no penny slot machines in the Cancer Casino.
Lisa has decided to try Nivolumab for her Lymphoma. It is a drug that has been approved for melanoma and recent studies show that it is very effective for refractory lymphoma. The biggest downside is pulmonary complications.
The stakes? Start with her life. Lisa has been made very much aware that people can die from pulmonary complications related to Nivolumab and that she is throwing the dice with seriously compromised lungs. Side effects, as described by the physician include a seriously limited quality of life. That’s like a doctor saying, ‘You may experience some discomfort’ as they stick pierce your flesh with a large bore needle. She will be nauseated, fatigued and flat out miserable while undergoing treatment. If the treatment works, it will be well worth it. If it doesn’t work, she will have wasted precious time in a life measured by days instead of years.
The Cancer Casino is not for the faint of heart. It takes nerves of steel to risk it all on a single bet knowing you may never get another chance to roll the dice. There are other gamblers throwing the dice and you can’t help but realize the odds of winning go up every time someone else loses. Someone has to win, after all. It’s hard to look in the mirror when you’re on a winning streak.
The Cancer Casino offers lonely games that are not appreciably improved by skill. Luck gets all the credit because it is difficult to imagine a God who would leave one family devastated by loss and show favor on another. You don’t get close to the other players in the Cancer Casino.
And this how Lisa will spend the next several months – gambling with her life. I will sit on the sidelines and cheer. My opinion about what she should do is worthless. I want her to do well and I can’t be trusted to be objective. Never trust anyone who has their eye on your prize.
The Cancer Casino has no members card to earn points for a free buffet. There are no room specials or free drinks. The entertainment sucks.
But when you win, it’s worth it.
When you lose, well, no point in considering it.
Maybe we will bet the farm and win.
It could happen.