Sunday, November 12, 2017

For Bobby

November 12, 1974 my brother Robert Donald Connolly was born. Robert after both my dad(his middle name) and my mom, Roberta. Donald for my dad's dad.

He was a very sick baby. Heart problems, lung problems, stomach problems. He wasn't expected to live a year. His first year was full of hospitalizations. Yet he defied the odds. Until the fricking brain tumor.

We were not quite 2 years apart. We had a pretty normal childhood. I knew he was sick as a baby, scars on his chest and throat stayed the same size as he grew around them. I never knew how precarious that first year was. I knew that although we were treated normal- he wasn't pushed to be as active as other kids in sports. I never questioned why-I just knew it made mom nervous. But just about everything made her nervous. That's just how moms are.

He loved bananas. So I hated them. He wanted pineapple upside down cake for every birthday- pretty much it was all about the cherries.  He loved cars. No one could ever tell the story better than my dad about our short stint playing pee wee baseball- Bobby used to smuggle hot wheels in his glove and would sit out in right field- forging paths in the dirt for his cars. I can't hear Peter, Paul and Mary's Right Field without ugly crying, or John Denver's For Baby, originally titled For Bobby. Fortunately neither song gets airplay and only randomly pops up on shuffle. Or days like today when I play it while Phil n the kids are at the movies.

We hung out with Melissa and Jason. Roughly our ages, I always envisioned he and Mel would eventually get married, making us real sisters. She was his first kiss- waiting for the bus, they were 5. That sealed the deal in my book.  She and Jay message me every so often when they think of Bobby. Other than family, I often wonder who remembers. As much as it hurts that he is gone, hearing he is remembered is the gold that fills the broken cracks.

He had posters of Ferraris and Lambourghinis in his room when he got older. When I turned 16, we were gonna buy a Jeep together- I got to pick the color, it was going to be blue.  He loved music- he introduced me to Europe and 2 Live Crew. Ironically we sat and listened to the Final Countdown on his walkman over and over in the hospital. Countdown to what, we had no idea at the time. Going home, feeling better, something. Mom played Pachelbel's Canon in D constantly as the countdown kept ticking, the tumor unrelenting. When Phil and I got married, it had to be Pachelbel- not because it was the trend, but because I had to attach happy to the song, it was already a part of me and I could not be debilitatingly sad every time I heard it.

The only time we were on the same team was when we were both against something. We fought a lot. In high school we rarely talked. He had his own set of friends, Jimmy and the other Bobby, he now was just Bob. They were into cars. We were happy forging our own ways. We still would decorate the bay window for Halloween- before everyone started "decorating" for Halloween- we'd start right after school so it would be lit up when mom and dad got home from work.

Our discussions consisted of don't tell mom and dad or else I'll tell them this. We were keepers of each other's secrets. The biggest one being when he was in a rollover car accident. It explained the headaches. We were in the same level math, I'd go ask for help- he'd yell at me to get lost. He was failing. It was a secret that wouldn't be kept for long.

I remember his hands. Phillip has his hands. He would have been tall. All torso like my dad. He would have been the best uncle. He would have been a great husband and an amazing dad. But he never got the chance. When my kids struggle with normal, I am constantly torn between being thankful for normal and can't we just skip the BS? I could sit around and be angry- lord knows there's enough anger and saddness- but that would be a disservice to him, to his memory. He and his death are a huge part of why I approach life the way I do. We are impermanent. We will be only memories to those who love us and they are also impermanent. But I cherish the memories. And we are what we pass on and we pass on pieces of those we love any way we can. I remember the way he laughed. sneaking around together early Christmas mornings, time outs in our rooms- sitting in the door jams whispering about how much trouble we were in.

I remember him every day, but days like today he is both closer and further away. The sadness heavier. When we were first trying to cope with losing him, my mom used to say- I had 15 more years with him than I thought I would. In that I saw her strength,  but also the great sadness that never leaves, the nervousness made sense. I recognized this when I had my kids. Even more tangible when Lily was diagnosed. Then Phillip's diabetes. Every year when we scan them. But we are not permanent. We do our best to live as long as we can - the emphasis on living. We make the memories that others carry with them. We remember.

I miss him every day, but today a little more as we make pineapple upside down cake. Happy Birthday Bob.

Wednesday, November 8, 2017

Insufficient Breaks

Ah Life. The ups. The downs. The more downs.

Lily was looking for pictures the other day and stumbled across the blog. She read quite a few and we sat and talked. She had lots of questions, she didn't remember a lot. Part of the reason I started blogging was a journal-now reading back- I don't remember a lot and then the words crash around me. It's not easy. We've kinda dealt with a lot of shit. It's been tough to write lately- finding time, emotional energy and not be negative. Although as a good friend reminded me- you can feel the toughness and you don't have to be happy about it. Happy about it has been elusive.

Lily is doing the best of all of us right now. She and Kiera remind me a lot of me at those ages. Bella is truly a unique creature and dealing with being 11. Being 11 kinda sucks- in case you hadn't heard- she will tell you. The snark is strong with that one. Lily reads and reads and reads. real books. she prefers them to the kindle or electronic versions. I understand. She says she just likes the feel of the book and turning the page. We visit the library, a lot. She has friends at school and seems to be really happy.

Kiera is struggling with the challenges of the IB program as well as the time requirements for dance. It is so different than where we were with Phillip at this point. She is realistic and although she loves to dance- she does not think she wants to make a career of it. I just hope she will continue to dance, she would like to start a club at school. She is talking about withdrawing from classes after their Nutcracker performance. She really stepped up and became the little mommy for us last year, I really can't argue with her wanting just to have time to be a teen.

Bella is 11. not a little girl - not a woman- plain ol trying to figure things out. We just extricated Lily from this awkward place- or she grew out of it- so we apply miracle grow and hope for the best. Tomorrow is her arm MRI- finally-hoping to rule out some of the anxiety around that thing.

Dobby is like having a toddler. He eats things he shouldn't, poops where he shouldn't and needs lots of attention. Of course everyone gives him attention in their own way and that amounts to several hours of circus dog training for him each day. I walk him a bunch which is good for me physically and emotionally and he enjoys quiet naps in the sun while the kids are at school.

My sweet Phillip. He turned 18. And magically did not instantaneously gain the wisdom of life that adulthood promises. After being in a relationship for a year, young Romeo and Juliet were told they could no longer see each other. Although I don't agree with how many things have been handled, we absolutely respect her family's wishes. We lost part of Phillip last year, I thought it was me, I remember all too well being surrounded by sickness my senior year. I practically lived at Phil's house that year,  But it wasn't about me. Phillip was in love. All focus was lost, he started to lose himself in the relationship. His grades were the first indication, then he didn't apply to some colleges we had talked about, he stopped talking to us, he wasn't careful with his blood sugars- which made him angry, a lot.  He was going through a pretty normal thing with a bunch of not normal. We were trying to cope with a pretty normal thing with a bunch of not normal. Just when I'd see glimpses of him and think he was moving on, he'd slide back. My poor child - cursed with his father's loyalty and my passion for saving lost causes.  Oh to be able to share the insight on that and have him hear me.

Parenting is not for the weak. You lay the foundation and just pray it holds. I wish I could prevent him from heartache, but these are the experiences that break the heart wide open. With the right healing- the capacity for love will be even greater.

My adrenal glands just aren't recovering. I try to manage physical and emotional stress the best I can(I have a new dragon egg smelly thing- as the kids call it- a diffuser for relaxing oils)- we are the opposite of relaxing- even on our most laid back day. The night after my last chemo- I went into adrenal crisis.

I thought it was a headache. Which stresses me out- it could be the weather, it could be the stress- it could be more. So I retreated to my room with oils, tylenol, and ice pack then a heating pad. Within minutes the rest of the available Mallorys were sitting around, playing with Dobby, rubbing my feet. Everyone knew something was up. My stomach started hurting- again catch 22 stress- then the vomiting began. I tried zofran, I tried heavy steroids, everything came back up. I felt horrible. Phil decided I was not in fact contagious and needed the shot. He tried to take my puke bucket away. I cursed him- I think it would have made a great remake for the Exorcist. He finally gave me the shot, and we headed to the ER.

Of course the ER didn't know what to do with me, we enlightened them. It was slow going. The shot kicked in- iv zofran was lovely and fluids helped. I upped the steroids the next few days and then wean back to my regular dose. The dose changes are always tough emotionally. And life goes on and I make dinner because Phil has extra work to make up for the unintended day off. It's a reminder to take better care of myself for everyone's sake and well adrenal crisis really really fricking sucks.

My adrenals are quitting, my platelets aren't bouncing back- nothing transfusion worthy- just bloody noses and bruises. Like anything- I know so many who are far worse off- so I dare not complain. But my gut says we need to strengthen my body again. So after meeting with my oncologist and some thinking- we are holding chemo- the idea was until we do a PET scan. IF there is no progression, or evidence of active disease- we can evaluate and come up with a balance. But of course the PET is not available until the week after Thanksgiving- which would mean skipping 2 treatments. No one knows the right call. SO it's mine. Choose your own adventure cancer style.

SO I go with what I know versus what I wish. I know that I have aggressive cancer that keeps trying to find a way to thrive. I wish No evidence of disease meant I didn't have to worry- I will always have to worry- it's just at what level. I know it could be worse. I wish it was easier. I know I am tired. I wish I wasn't. I know that chemo is keeping the cancer at bay. I wish it didn't damage the other systems in the process. It's time to mitigate damage before it's too late, while not letting the cancer get ahead and this is what managed care is. It's not a cure. Other things go wrong, you have to roll with it and hope to keep ahead of all the bad things. And sometimes you just need a break.

So I will probably head to chemo next week and pound steroids like a world champion cyclist. Thankful for a little break, help the kids with the big ones, wait for the PET and hope for the best.

Lily Kay Monkey

Lily Kay Monkey
November 2008 Photographed by Shelley Detton (7 Layer Studio)