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Join me in my fight to be treated and cured from Hodgkin’s Lymphoma.

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Posted 2019-01-13T05:02:26Z

A December to remember

Happy new year! I’ve tried to write this final update a hundred times, but haven’t been able to do it without plans, children, or other general interruptions getting in the way of me putting sensical words together. It finally dawned on me that my tardiness is a good sign. I am back in my “normal” routines and roles which equates to very limited time for self care and reflection. 

It’s been over two months since my last and final treatment. Nobody told me how hard it would be to break up with chemo. I became a bit of a junkie, jonesin’ for the hard stuff that eased my worries and killed the cancer. As long as I had it running through my veins, I trusted (or at least tried to trust) that the cancer wouldn’t grow and that I was in the clear. So to part ways with the thing that helped me for 16 weeks is a little (lot) bit scary. Totally ass-backwards, I know.

We took Kasra to see his first show at the Crystal Ballroom a few weeks ago. He has decided that his musical genre of choice is self loathing, emo, alternative rock. Hopefully that is a temporary interest and we can convince him that there are other songs to like besides one titled “broken.” While watching these hipster sad boys on stage complain about their whirlwind flights and tour stopovers, I thought of how easy it must be to lose sight of reality when given even just a tiny bit of fame. I wondered about all the things that just become expectations and demands. While I’m not famous (yet), I hold so dearly my new appreciation for seemingly mundane things. How lucky am I to have two feet attached to my able legs, that walked my body into a beautiful building full of incredibly caring and compassionate medical providers week after week. Grateful for my healthy lungs and steady heart and sharp brain. And for all those other strong and important organs thriving in this body of mine, this body that has never ever let me down. I recently listened to someone speak about how after they were cured from cancer they still felt stuck in the shell of a body that was trying to kill them. I haven’t felt that way, in fact in a strange way, I’ve found peace in knowing that this experience was a needed lesson. It’s now my life commitment to cherish each day and acknowledge it for what it is, a gift. 

On December 19th I had scans done to check how my body responded without chemo for six weeks. It was my first appointment where I didn’t cry, not even one single tear. I finally felt confident, for the moment anyways. It was my first ct scan and the tracer made me feel like I’d been injected with Dr. Bronners liquid tea tree soap; a quick sensation of tingles starting on my scalp and rushing down throughout the rest of my body and then out my feet. Afterwards, I had my third pet scan in the course of six months. 

On December 21st I nervously met with Dr. Godwin to discuss the scan results which were miraculously CLEAN again. My medical chart was officially updated to note that I was cured from cancer on 12/21/18. It was extra meaningful that the results of my scans would come to me on winter solstice with each day ahead bringing more and more light and less and less darkness.

Kasra made me this necklace to wear to my scan result appointment. I sure as hell wore it and rubbed his shrinky-dink hands as I anxiously waited for Dr. Godwin.

We celebrated Christmas and the day stood still with so many magical moments and ungiftable gifts. It was a Christmas that I’ll never forget. On 12/28 I had my port removed.  I was a bit confused on what this procedure would even entail, as one of the many doctors I had seen prior referred to it as an ”in office procedure.” In my imaginative mind, I had created this picture of basically a dental chair in an empty room with a rusty scalpel on a metal tray nearby. What goes in, must come out, right? Nevertheless, I checked into admitting and was pleasantly surprised/terrified as I was led to an unfamiliar operating floor in the belly of the hospital. Right away the nurse asked if I would like to be sedated or not. Anyone that knows Kaveh, knows that he will not shy away from declaring that decision making is my biggest disability. I went thru the pros and cons. Topping the list:

-No medications administered means cheaper hospital bills. I love a good bargain.

-Kaveh had a boys night planned in the basement starting at 8pm, and after a long delay to get me in to the OR, we were getting short on time. Without sedation I would get to be discharged quickly after, and since I wasn’t allowed to eat before the removal, I was starving. I had my heart set on pizza and wings from fire on the mountain. No sedation meant I would be home, in bed, dipping those spicy wings into some ranch in no time flat. 

-Conscious sedation is weird. The surgeon described it as feeling like you’ve taken a few shots. You remain awake, breath on your own, but lose all short term memory. So while the pain itself would be the same either way, the sedation route just makes you forget it. In addition, you’re given a heavy pain med, and I didn’t want to become the next Demi Lavato.

After a long delay, including a concerning bedside announcement that the surgeon was tied up in a problematic removal of a port on the guy in the neighboring operating room, I bravely got my port cut out. Several of the nurses asked if I wanted to keep it and I couldn’t quite find a reason to say yes. I did ask to see it and got a little emotional as I thanked it for all its hard work. I am looking forward to not having a lump stick out of my chest to interrupt sweet snuggles with my kids. The hard protruding reminder against their cheeks was always met with the question “mama all done with chemo?” I’d always fake my confident reply, holding a bit of worry that I could possibly be lying to them. The hardest part of this whole process was, and I imagine will continue to be, the waiting and wondering and worrying. 

There is no known cause of Hodgkin’s lymphoma. No matter how many times or different ways I’ve asked Dr. Godwin, he always reiterates the same answer: we don’t know yet. Some say it’s just bad luck, or a cell gone haywire, some sort of mutation within the body. Likely caused by some environmental factor, but maybe not. It is not believed to be a genetic cancer which eases my domino feeling of guilt. I’m relieved that I won’t pass it down to my kids, and my parents are relieved that they aren’t responsible for passing it down to me. Although I‘d imagine they are inevitably filled with guilt, my parents and I will always be searching for its cause, the one thing, or series of things, that brought on the cancer. I catch myself doing it daily. In my quest to get answers, I confessed to Dr. Godwin that when I was in fourth grade, I was lucky enough to take a trip to Disneyland with my family. I was so excited for this opportunity and sure as hell wasn’t going to miss it for anything. About a week before our trip, I was in the backseat of my parents car, surely writing the fifth draft of my SoCal packing list, when we went over some railroad tracks. The sharp tip of the pencil jammed into my right knee and the graphite lead broke off under the skin. At this point Dr. Godwin froze from scribing and looked at me with the most puzzled and intrigued look on his face. “A confession?” he asked. Yes, a confession. I haven’t really told many people about this ill-fated event, mostly because when I was younger I was worried I would be in a serious multi-day surgery, likely resulting in amputation, and more concerning, a missed trip to Disneyland. I continued on with my story, questioning whether this chunk of lead in my knee could potentially be the cause of the cancer. He somewhat confidently assured me it was not the cause but recommended I get the lead removed. Nonetheless, I encouraged him to add this possible correlation to his research. I wonder about the toxic cause several times every day: when I reach for the non-organic lotion that I’ve used for twenty years, or is it my almost hundred year old house likely seeping lead and radon into my home? Was it the birth control poison that I took well past my wild teen pregnancy scare years? I’ve always said this disease has felt like a third pregnancy, with me being reborn a newly celled human, so the birth control idea does sound like a viable trigger. Should we get rid of all of our smart devices and revert to hardwired technology?? In my youth, I’d sneak Kraft mac & cheese and Cup O’ Noodles whenever the opportunity presented itself, and for my entire year of eighth grade pretty much ate only wintergreen Lifesavers for lunch. Are You There God? It’s Me, Janene. I need some answers.

I find it really hard to answer the question “how are you doing?” On the surface I think I’m doing pretty great. I feel empowered and strong, and beat this big thing that I never thought I’d have to do. But most days while acknowledging the gift of the day, I can’t help but just wish I could fast forward to the year 2052. When I’m 70, we will have made it through. My kids will be adults (although I’m learning that you never really stop being a mom, no matter how old your kids get... shoutout to my mom 👋) and I will have had the chance to know them as adults. I will have been at their sides as they cross off all their milestones, big and small. It will mean that they weren’t raised by a widowed father or had a motherless childhood. How do I balance my desire to take in every single moment and live in the now with wanting to bypass it all and be 70 years old?

I will forever have sentimental feelings as I pass by the Providence Portland hospital. I used to glance up at the fourth floor and get teary eyed with the flood of sweet memories shining from the windows where my babies took their first breaths. While I will always always cherish those memories, nowadays I lift my head a little further toward the sky, to see the bright lights illuminating the entire eleventh floor. A floor that provided me with so much hope and doubt all at the same time. A center where I had countless elevator rides in tears and just wanted to run away but was ultimately convinced to stay by the warm greetings and promise of the oncology staff. The place where I took my first breaths as a cancer patient, and more recently as a cured warrior. 

I’m guessing that the time between each checkup will get easier. I won’t see Dr. Godwin until mid March which feels a little like a waiting game. The clock on my five year journey to victory has begun. I’ve been able to identify the difference in how I used to feel and how much better I feel now, after treatment. I was so exhausted, but I just thought everyone felt that way. My limbs themselves were tired and heavy and I’m kind of shocked at how bad I felt and didn’t even realize it. I’m so grateful to have more energy and patience and not constantly feel like I’d rather be sleeping. 

Welcome 2019, full of endless possibilities, fresh perspectives and new beginnings. 

Shove it, cancer.

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