One of my favorite songs is Nowhere to Run by Martha and the Vandellas.
It comes to mind frequently these days.
Earlier this week my sister was in town. She and her family drove 11 hours and were here for 2 and a half days. Selfishly I thought to myself: “It’s not enough.”
I feel sorry for my sister as I know she feels that way too. While we laugh our way through the sorrow and fear, there’s also this desperate need to connect and hold on.
Despite cancer’s devastating physical effects, the disease has brought all three of us to a very good place in our mutual relationship.
Stripped of the illusion of “all the time in the world”, regrets have been shared and apologies given. Leaving only forgiveness, understanding and love.
We met with Dr. Savage who while not pessimistic, was not as upbeat as I’ve seen her during the last six months. During the visit the doctor seemed to put off the MRI results to the last possible moment.
“The MRI shows growth of the tumor” she said. Not a surprise, but still tough to hear.
“Did it bring friends, or is it still flying solo?” I asked.
“It’s still a single tumor, but the CA119 numbers going up indicate it may be moving elsewhere and we just can’t see it on the MRI.” The labs had indicated a 100 point rise, which is much less than usual, but still rising after one round of new chemo drugs.
I asked further questions regarding the continuation of chemotherapy treatment, the possibility of radiation and clinical trials for immunotherapy. She answered them, but all of it was as uncertain as the pancreatic cancer itself.
We left the oncology office that day all feeling like we’d been smacked hard and were just managing to remain on our feet.
Mom had been having really bad days during the previous week. Very pained with incredible increased weakness.
The thought of another round of chemo was tough for her to take, but she vowed to continue.
Confused by her fatigue and weakness Dr.Savage asked her if she was still taking her steroids and pain meds on a 4 hour schedule? The answer was “no”. She had run out of Prednisone; a steroid that boosts the effects of both the pain killers and the chemo, and hadn’t been taking it for weeks. The pain meds… she forgets.
So at least with this knowledge a new plan could be forged to attempt to give Mom more energy and less pain.
In addition to the Fentanyl patch which is worn continuously to deliver narcotic relief, oral pain med (Norco) to be taken every 4 hours on a schedule with marijuana as desired for relaxation, pain management and sleep. Prednisone 20mg once a day to give an energy boost and help the other drugs to work.
Tuesday is chemotherapy day. Every attempt is made to schedule at least two weeks in advance; the same day and time if possible for weekly treatments.
Following her 4 hour chemo infusion of Irinotecan, Leucovorin, and Fluorouracil (5-FU) – love the abbreviation of that last one – we took her home to rest. This combination of drugs is the oldest protocol for treatment of pancreatic cancer, and having tried all the others, the last chemotherapy routine available.
In addition to the chemo drugs, she is given Atropine to reduce cramping of her gut caused by one of the drugs (this dries out her mouth almost immediately, and slows the cramping over time), Benadryl (to reduce the likelihood of an allergic reaction) and steroids to help it all work.
The first hours after chemo Mom is exhausted, yet has trouble sleeping. That’s when the pot seems to do the most good in combination with pain and anti-nausea meds.
Sometimes I marvel at the chemical cocktail she takes in over the course of each day. I simultaneously despise the need for it and love that it can help her.
Into The Weekend
Now at the end of the week my sister is at home and so am I for a couple of days.
Mom is doing better with the steroids on board and a consistent delivery of pain meds. While it’s more than she’d like to take, she does admit she has more energy which is nice.
This morning when I called her she had gotten up around 7, eaten a decent breakfast (even though she’s not interested in eating), had a shower and dressed. This took her 3 hours and she was looking forward to a nap, but hey, it’s progress!
One of the toughest parts of this disease process for her is the loss of autonomy.
She can’t just jump in her car and drive to the market, shop a bit and come home and put away groceries. Nor can she vacuum her house, change her bed, dig in her flowerbeds or easily make a meal. It all takes precious energy, balance and focus that’s just in short supply these days.
But she can do some things.
She can get herself showered and dressed. She can make herself a snack. She can visit with friends either on the phone or in person. And if energy allows, she can get in the car and go for a ride to enjoy the spring colors.
Mom is still alive and engaged in life to the best of her ability.
I guess if I had any advice for those who ask me: “What can I do for you or your Mom?” it would be – engage her.
Let go of your fears and sadness over the impending loss, and talk, touch and be emotionally, mentally and physically present to make a soulful connection with this person you call your friend.
In the end, as in the beginning, there’s ultimately nowhere to run except towards each other.