F@%k Cancer, Part 5

I need time to stop.

For the seconds to slowly trickle and the minutes to last a lifetime.

I’m not ready to see days turn into nights, to be closer yet farther away…

Was this it? The last time I would see her? I found myself on an red eye flight to MSP,  connecting through JFK to race to my mother’s side in SJU. It was my turn to cover shifts at the hospital so my sister could take a mental break and extens her stay in Tampa a few more days before returning, husband in tow. She’d been back to her dogs for about a week when my mom relapsed. This would be the third hospital stay in two months, or fourth, I can’t recall when I stopped counting them. It didn’t matter anyway on the grand scheme of things because the retiree medical insurance was footing the bill. People got upset that my Facebook posts hinted that this could be the last chance I would have to settle any score with her, that she could be on her death bed. It wasn’t a far fetched thought. She was having greater issues coming up with clear and complete responses to everyday questions and could barely handle everyday tasks. Moving to an from the bathroom would make her head spin.

On November 10th, W’s birthday, she had asked me to confirm my next visit to the island which at the time I was pushing back to December. “Hija, te quiero ver…” MBA finals wouldn’t allow us to celebrate her 63rd trip around the sun in person but I could definitely travel during the winter holiday break at work. It was an optimistic and practical plan, approved by the Colonel herself. She even offered to pay for the ticket, a kind offer I declined because we needed every penny funnelled into her care. She was and wasn’t in a rush to see me if it meant skipping classes. To her credit, she was still adamant that I finish my studies and graduate “over her dead body”. For no reason whatsoever would she allow to be held responsible able not finishing the program. Hence the wait. That was her school teacher and HR training talking, and W and I humored her. He and I were in all of this, MBA included, together.

Everything was fine until today…

A week earlier her best friend had made arrangements with the VA Hospital to accept her as a catastrophic patient even though she had renounced the services upon retirement. This loophole allowed us to sneak her into the cancer care wing through the women’s pavilion unit, allowing a new set of doctors to give us a second opinion effectively skipping the ER. Maybe the US government had some avant-garde treatment that we didn’t know about. Wishful thinking. Turned out another tumor was underway. Chemo and radiation therapy should have started almost three weeks ago which would have delayed new growth but that was just a dream. The Stage IV Glioblastoma multiform cells attack faster than traditional cancers and now it was too late. Mom had been backpedaling her decision to get treatment based on the certainty that no matter what she tried the outcome would be the same: death. Titi, Lilo and I made an executive decision to call and cancel her appointments. We had reached a dead end.

It wasn’t the time to be selfish. It was the time to be understanding and accepting.

Health wise, the Colonel was built like a tank, and she did look good despite the condition. The only thing indicating she was not physically well was the cotton ball hairdo she sported, a look that aged her. She really detested it. She’d been coloring her hair off since she was a teenager, and I recall spending many Saturday mornings at beauty salons during my childhood. Vanity, thy name is Colonel. He he. At some point we’d schedule an appointment to pamper her and keep her roots up to date. It would have to wait for a little while, at least until we got out of the VA. I had to get there first though.

Thanksgiving was coming up so I aligned my departure to catch the holiday break. She’d been at the VA since Tuesday, two days after the birthday call. When I finally made it to the room, the steroids and anticonvulsant protocol had been rushing through her system for 5 days straight giving her a chance to regain a semblance of awareness. The episodes forced the system to reboot slower during each occurrence, and this time she wasn’t talking or engaging as much as in previous hospital stays. My titi and cousin had to explain to her the reasoning behind the change of the environment. This facility was closer to her new residence, my grandma’s, which was more convenient for the family. These stays were becoming routine and the family was exhausted. She liked the privacy and spacious room better and we took the win. The joke, she explained, was that she wouldn’t remember any of it anyway.

My cousin was now living in our old home, the condo, an arrangement that facilitated rent and helped cover the second mortgage expense. It’s many staircases were not ideal for a person with memory and dexterity loss leaving us no choice but to move mom back to her childhood home once her diagnosis was confirmed. My aunt was already taking care of my grandmother and offered to keep an eye on the 24/7 nursing staff, and her dear sister. That’s loyalty right there. Mom thought titi was a bit rough with her but we figured she needed the tough love only a sister, and best friend, could provide. The three women were under the same roof once more, but only one would remain standing at the end of this journey. Titi was perfect for the job, and as a physical therapist and naturopath she found many alternate ways to heal my mother’s body and soul. These little gestures meant the world to my mother, even if she didn’t articulate the feelings well, or at all.

Even though eventually, and slowly, she regained consciousness and control, the aphasia was so severe that the psychiatric team’s evaluation had found her unfit to make decisions about her care. The power of attorney wasn’t technically under name but the family and oncology staff understood that I had the authority to make determinations on her behalf, with my sister’s blessing. We made peace with the findings and with the road ahead. By we, I mean me. Royal we. The introverts in my family were too distraught to begin to acknowledge the end was getting closer. The extroverts were at a loss for words, consumed by the emotional toll of seeing her wither away.

Any illusions of sneaking in a vacation while on the Island had been shattered by the severity of the situation. My mom and I spent four days together in the secluded room, a bit apprehensive of the promises made by the doctors (all female, 💪) to check us out of the hospital in time for Thanksgiving dinner. It was a bittersweet moment since the only reason they were shipping us home was that my mother was beyond saving. Modern medicine had reached its limits. The newly scanned tumors, yes plural, grew unencumbered, and the convulsions would only increase in frequency and strength. From this point on it would all go downhill, as fast as the cancer desired. We were at its mercy. It was out of our hands now.

Hospice care it is. No more emergency room check ins! Woohoo?

The palliative care nurse assigned to our case gave me a big strong soothing hug that shook me to the core. In a soft calm voice she proceeded to tell me that sometimes people need to be forgiven, even if you don’t think or know if they are seeking redemption. Apologizing works wonders even if you don’t know what you are apologizing for. These words haunted me. I had spent the last two days hoping my mom would regain some sense of self but now I worried she would spend her last good days bring up old wounds that needed TLC (tender loving care). She was frustrated and tired, her words a jumble of ideas that didn’t seem to match her intent.

For two days I couldn’t make out what she needed or wanted, and she couldn’t call out to me by name. I got her to confirm she remembered my sister’s name whom apparently she had forgotten during her last episode and hospital stay. If it wasn’t for the way she cries or lights up when she sees me, I would be hard pressed to believe she knew who I was. Her arms extended like a five year old asking to be lifted off the ground and rushed home. Those were the best and worst hugs. All I could do was comfort her, make her laugh and smile.

Out of the blue, my mom managed her first cohesive thought in 6 days!

The chaotic thoughts inside my brain were disrupted by the sweetest words: “Te quiero”. I looked up and locked eyes with the figure seating up in the bed. The look of disbelief in my face must have been impressive because she smiled, giggled and said: “Mucho”. Ladies and gentlemen, the mother-daughter bond, ftw. I was floored. The reboot was almost complete! She was back! The trick was that even with this beautiful displays of affection, she still has no clue what my name is. She claims her difficulty remembering is due to the fact that her daughters have weird names. 🤷‍♀️🤦‍♀️ Gee, I wonder whose fault that was. 🤔😋🤓 A weight was lifted off my shoulders as her heart knew her baby was home, which also meant she knew she was in deep do-do, again.

As if the excitement wasn’t enough, mom decided it was the perfect time to deliver a very important message. Her aphasia was still prevalent forcing her to brew thoughts for a couple of hours before it was intelligible. The day started with her repeating the word “necia” or foolish, which was not an insult or qualifier she would throw around whimsically. One by one the rest of the parts of the sentence found her and I stopped dead in my tracks when she signaled me to get on the bed with her, clumsily forcing me into a weird embrace/choke hold. After I laid down, she started to caress my hair while she repeated over and over: “Fui una necia y debi haberme quedado callada. Tu no eres un error.”

IT WAS FOOLISH OF ME TO HAVE EVER SAID YOU WERE A MISTAKE!

A single tear escaped my right eye. Of all the things to be worried about her thoughts were for me. Dying wasn’t an option for her until she knew I knew that I was loved, wanted. [Must. Not. Lose. My. Composure.] This was a request to be forgiven for a bad lapse in judgement. Interestingly enough I remember the argument that triggered her concern: I was five and called her out for hating me because I was an unplanned unwanted pregnancy. Boy, was she upset. I’m not sure if she cried then as she was now. Out of all the things to recall this event was the most pervasive. The most raw. It didn’t stop there. She kept going, connecting thoughts so easily I had forgotten why we were in that bed in the first place.

In this house only love. Shhhh… ¡Callate y escucha! (Shut up and listen.)

She carefully explained I was the reason her 25 year old naive and carefree self had to grow a pair, get a career and save for a bright new future; for her family and the many generations that would follow. I told her I knew she didn’t hate me, and she sushed me. “No hate, only love!” Forgiving her for being a hard ass was easy since her exigency made me a better citizen and human, stellar and independent. We were allies who trusted each other with our lives. With Lilo’s. As she repeated “In this house, only love. I love you.” her grip on me tightened. It was like getting a hug from Baymax at Epcot Center. I almost had to call the nurse to get her off me because I was starting to lose my breath. Mom, it’s okay, I love you too. “I love you.”  She couldn’t stop the tears or the compulsion so we rode the wave together. Eventually she recalled my name.

There’s this unique space in time where it was just us, and my mother did an excellent job capturing my attention and excitement by providing lots of growth opportunities and experiences for me laugh, explore and enjoy life. My sister was a great addition to our clan but she never knew firsthand how hard mom had it as a new parent and single mother. By the time the second kid came around the then Major made it look so easy. It’s really eye opening to realize many of our peers are clearing their own path to redemption, to forgiveness and acceptance and we may not even know it. My mom hid her pain well but her condition was crumbling the walls around her heart and insecurities. Home for her had always been her two girls, the place she drew strength from to find inner peace. It was time to leave pride aside and acknowledged how much of her is in us. How even after she departs, she will still be here because I can hear her in my laugh. Because I can see her in my sister’s profile.

Our agonizing road to loss is full of so many wonderful memories. I wish none of this had to end, that we could have more time to make even better memories together. God, the universe, or whatever power that be: Thank You. I rather live knowing she was my mother than to have never met her at all.

Only love is real and remains eternal…

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