Punchy Mommy Believes in Life

How I evicted the worst uninvited overnight guest and took back my life

My team

Dorothy and friends

I had the best medical team in the world. Mom’s an oncology nurse and DH is a doctor, me the lawyer, and all of us from the east coast. We had every base covered. We were a force to be reckoned with that these southern belles had never encountered before. Mom and DH kept the boat afloat and sailing at a time when I had no sea legs. You don’t know know the definition of advocate until you see these two in action. Dad, recently retired pediatrician, had become nanny-in-chief. Who knew childcare would be one of his main activities in retirement? Dad and Little Man became fast friends. Little Man was Dad’s little shadow. Mom and DH were always with me so Dad and Little Man had a lot of time together. I will collectively refer to them as “my team.”

Here’s what my team looked like: Mom 5’11’, trim, perfectly muscular, wearing a black leather Jean Paul Gaultier bustier and matching skirt, with fish net stockings under thigh high black leather stilettoed boots. A beautiful Mont Blanc pen and pencil in one hand with a leather bound pad of paper of which she takes copious notes, and a Mac Book Air and smart phone in the other. Her makeup is flawless, perfectly highlighting her sky-blue eyes and her hair is in a magically coiffed bob. She wears Tom Ford sunglasses and looks like a white, 60ish Beyonce. She is Mom FIERCE.

DH is toned, tall, and handsome. Wearing an immaculately tailored black Tom Ford suit with a white shirt and coordinating tie. Hair slicked back. Gorgeous Italian black calf leather shoes. DH has two iPhones, one at each ear while typing on his Mac Book Air which he balances in his lap. He hears all and sees all, like a less dramatic and less arrogant Ari Gold from Entourage. NOTHING, and I mean nothing, get’s by him. He wears Oliver Peoples aviators which shield his ever calculating and piercing blue eyes. To say he is a quick study is a gross understatement. For someone who was trained to handle most things in the head and neck, he incredibly fluent in all things cancer and chemo in a matter of days. There was only one word to describe them. They were badass. Mom had decades of nursing experience behind her, she thinks outside of the box, she knows how things should be done, she knew about medicines that none of the doctors knew about. What about Kytril? DH, fresh out of residency, deftly saw the bigger picture. He thought of things no one thought of. He could look at my lab reports and magically, like reading the tea leaves, saw discrepancies that no one else saw. When they walk into the hospital, the doctors and nurses ducked the other way. Gazes turned down, voices were hushed. Ms. Wizemann had arrived.

My first oncologist was not nice. I’d like to call him a name that rhymes with bouche (yes, I know it’s little crass, but this was not the most articulate time for me). He, DH, and Mom clashed early on. He recommended that I be on RCHOP, the “gold standard” of chemo regimens. But, within 24-36 hours of his recommendation, DH had researched and confirmed with his colleagues in the Garden of Eden of the Bay Area that I should, no I must, be on a different protocol, REPOCH. REPOCH was relatively new having been developed only 10 years ago, but it was showing remarkable cure rates and it was eliminating radiation from the standard treatment plan of those with mediastinal masses. DH and the Bouchey doctor went toe to toe one day about chemo dosing. The Bouchey doctor wanted to cap one of the chemo drugs and not give me the maximum does because he was concerned about side effects. DH was playing for keeps, I know of the risks and I accept them. I’ll sign anything. Give her the dose she needs. He spent hours analyzing the risks and decided that my life was worth it, but the Bouchey doctor wasn’t interested in being aggressive with treatment. I think he was more worried about his malpractice policy.

My official diagnosis came on a Tuesday or Wednesday, we met with the Bouchey doctor on Thursday and by Friday I was admitted to the hospital to have 48 hours of IV Solumedrol, a steroid, before chemo to shrink some of the tumor back. It was Mom’s idea of having me admitted early so I could get the steroid. The Bouchey doctor hadn’t thought of that. Good idea!. By Monday, my team had decided that I would only stay with this doctor for the first cycle of chemo and then transfer my care to another doctor. We needed a fighter. We needed a doctor who was as passionate as we were. We needed someone who was willing to take calculated risks. We didn’t exactly find this person in Bayou. There are no lymphoma specialist here and certainly no one that had treated PMBL, but we did find a nice doctor who was smart enough and willing to go along for the ride as he put it.

Anything you can do, we can do better. We can do anything better than you. No, you can’t. Yes, we can. No, you can’t. Yes, we can. No, you can’t. Yes, we can, yes, we can! I know it’s not the best song to describe a team a badass as mine, but it fit so perfectly!

My team read, re-read, researched, and committed to memory all things PBML and how it is treated. They often spent evenings talking about it and it was a regular dinner topic. Every move I made, every step I took, they were watching. They demanded photo copies of everything in a world where no paper is used. I’m sorry but I don’t know how to print on EPIC. Oh, that’s ok, why don’t I show you how to do it. Would you mind if I sat down? If we needed to speak with someone, we paged, emailed, and called at the same time until someone called back. Mom and DH poured over my chemo protocol before each hospital admission and did their own calculations to make sure they knew exactly how much of each drug I was supposed to get. That’s point one-oh, correct?  Mom checked each chemo bag as it was hung. She calculated and recalculated the rate that the pump should be set at to insure that I received continuous chemo over 96 hours. They checked, rechecked, and then called in their trusted advisors. Doctors, nurses, and pharmacists were consulted on both coasts through emails, phone calls, and text messages. After all this work, they meticulously went through it all again with my doctor, with the on-call doctor, with residents and fellows, and with the nurses. It wasn’t unusual for my  doctor to make a recommendation which DH, who had already considered, calculated, checked and re-checked every scenario, would suggest a different course of action. When the doctor thought it was reasonable to be less aggressive, DH and Mom had reasoned arguments for pushing the line. We wanted someone to be the captain of this ship, someone we could trust, who knew how to follow a chemo protocol. But alas, my team wasn’t willing to cede power to anyone, not when my life was at stake. Without them who would have corrected the Bouchey doctor’s mistake when he ordered one day’s worth of chemo to be given over four days?

You say RCHOP, we say R-E-POCH. You say Neulasta, we say Neupogen. Protocol, protocol, PROTOCOL. Follow it people! You say Fluconazole, we say Nystatin. Am I the only one worried about her liver here? You say Dilaudid, we say Vicodin. She doesn’t need something that strong. You say 17 cm mass, we say 13 cm. Check it again your measurements are incorrect. Please let me know when you have an updated report ready. You say you’re worried about neuropathy, we say we want to kill cancer. You say no dose escalation, we say LET HER RIP! UP THAT DOSE! 

Mom lived with us for three and half months. Dad spent a lot of time with us too but he did go back home a few times to make sure all was well at home.  Mom and DH handled everything. DH dealt all the medical bills and issues with the insurance company. Mom took meticulous notes and created and maintained my cancer dossier. Despite going toe to toe on issues more than once, they were a well oiled machine and they were working to get me better ’cause ain’t nobody messes with my baby.

So here we were. One team with one united goal…to get me well.

We didn’t know where we were going, but with experience, creativity, intellect, dedication, hope and prayer we stayed on course…

Follow the Yellow Brick Road.
Follow the Yellow Brick Road. 

Follow, follow, follow, follow, 
Follow the Yellow Brick Road. 

WizardOfOz_214Pyxurz

Cursed

I was really upset my parents had to cut their trip short. They had just arrived in Rome when they got the call. Luckily Sister2’s mother is a travel agent and had arranged all the travel plans for my parents to return early. All they had to do was pack up and get on the plane to fly back the U.S. so they could urgently see their youngest daughter who had a tumor.

I started to feel so sorry. I was sorry for everything. I was sorry I was putting DH and Little Man through this. I was sorry Little Man was going to have a sick mom. Was he going to have a mom? I was sorry Brother and Sister had to drop  everything in their lives for me — a new wife, a husband, three kids, jobs…I was sorry my parents had to leave their trip for me. I was so sorry I was putting my family through this…again.

You see, this isn’t the first time tumors have cast a shadow over our lives. Sister was the same age as I was when she was diagnosed with Hodgkins Lymphoma in September, 2001. I will never forget sitting next to her during Rosh Hashanah services and seeing Mom look at her neck. There it was, clear as day. A jelly bean-shaped and sized thingy sticking out of her neck. Mom looked shocked. She said, you need to get that checked out immediately. I went back to Boston where I went to college for Yom Kippur and one night, before or after Yom Kippur (I can’t remember exactly) my parents called me. I knew something was wrong immediately. They said they biopsied a lymph node on Sister’s neck and it wasn’t good. It was lymphoma. DH, who was my boyfriend then, wasn’t with me that night. In tears, I woke up my roommate  and her boyfriend to tell them the news. My Sister married a few years earlier. She and Brother2 just bought a house. They just had a baby, a girl, the first grandchild. Oh, the sadness I felt was indescribable.

I called Sister the next day. Brother2 answered and he could barely choke out the words beyond his tears. Sister got on the phone and said I’m ok. It’s going to be ok. I’m going to beat this. I thought, But how? How will you beat this?  How can you be so sure?

I wish the story ended there, but there’s more. My cousin, on Dad’s side, she too had lymphoma. More than 30 years ago, just after having her third child, she too developed symptoms. She had a mediastinal tumor. What is this? Where is it coming from? Why is it here?

I cried a lot for my sister and the tragedy of the whole thing. I cried for my Brother and I. How was Sister’s life so different from ours? How did she get cancer? Will I get cancer?

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