Update as of July 10th:

Hello everyone. I know it's been a few weeks since my initial posting. Last I left you, we were waiting to get the results of the body scan to see if the cancer had metastasized. The scan came back clear...a small victory!  However, because of the tumor size, location on and damage to a main nerve line, the final diagnosis is Stage 4. They believe it started in the minor salivary glands in the roof of my mouth, walked up the small nerves into my sinus, grew amongst the ball of nerves behind my eye, and now is moving along the main nerve, pushing up against my temporal lobe and getting dangerously close to the brain stem. If it makes it there, I'm screwed! (And yes, the doctor agreed that is the official technical term that appears in the text books!!) I understand this is just the diagnosis as the medical community sees it. Because the tumor is inoperable, our only hope is that radiation will shrink it and buy me time. This cancer is unpredictable and sometimes responds and sometimes doesn't. If, in this case, it decides to be stubborn, then the doctors estimate I have about a year. Holy Shit! (Pardon my French, but truly there are no other words to express what it feels like to have a doctor about my age, sit down with tears in his eyes and say, "I never want to say this to a 46 year old, but at this point, Lorena, we are just trying to find a way to buy you more time." The shock of hearing that is .... well.... devastating. Let me just say that I hope none of you ever find yourself in this position. In the blink of an eye, my life as I know it, is over.

My days since then have been filled with getting another round of CAT scans and MRIs, meeting with radiation and chemo oncologists and a plethora of other medical specialists, financial representatives, and social workers. I am fully immersed in the cancer world. I was handed a beautiful binder from the Cancer Institute that on the front cover says, "Welcome. We are here to help you on your journey." The whole thing makes me nauseous. It's the kind of binder you receive when you have excitedly arrived at a personal growth seminar, knowing you will be a changed person when it's over. Oh I'm a changed person alright, and as I type, that binder is sitting over in the corner all by itself. I've yet had the desire to pick it up and see what it contains. One can only take so much difficult news, and I've reached my limit. No doubt.

So now comes the decisions.....choices no one should ever have to make. Thank you to all who have made suggestions, sent links, and offered your alternative therapies and services. I appreciate the help and will likely be in touch for that which resonates with me. And for my own reasons, I am also called to seek more traditional therapies. On the one hand, I want so much for someone to tell me what to do, to make the decision for me. And yet I know this is all mine. What if I get it wrong? Unfortunately in this situation, there appears to be no good choice or "right" choice. Everything feels "wrong". Here are the options that have been weighing heavy on my heart and mind:

Choice #1: Receive treatment here at OHSU in Portland by a wonderful team of doctors with whom I'm already developing a trusting, playful relationship, and the support of all you amazing souls are ready and willing to help in any way needed.  I am looking at a 7 week course of radiation and chemo combo. The radiation is photon, and OHSU is one of the best at what it does. Even though there is no chemo shown to be effective in getting rid of this cancer by itself, it is experimental to use a small dose to boost the effects of the radiation on the tumor site. Of course, that means the chemo will also enhance the side effects of the radiation as well. Side effects can include: intense burning sensation and painful sores in the mouth and throat (to the point that I may need a home feeding tube because it will be too painful to eat/drink), deaden taste buds and saliva gland, nose bleeds, nausea, headaches, burns on skin, hairloss, possible risk of blindness to not only my right eye but also my left (because the nerves for the left spring from the same place), possible long term damage to my temporal lobe which can lead to necrosis of that area. Side effects are likely to last 2-3 weeks after treatment stops, and if the radiation is successful, it could buy me about 6 years. 

Choice #2: Been referred to Seattle and a top doctor at Univ of Wash who uses an experimental combo of neutron and proton therapy. The scientific research is clear that neutron therapy has been shown to be the best for breaking up this kind of cancer initially. However because of its aggressive and persistent reoccurring nature, the long term results don't appear to be any different. In a phone conversation, this doctor (who is very formal) too said if the therapy works, then he guesses it will buy me about 6 years. I would have to be in Seattle for 7 weeks, away from my kids and support system, and the costs would be much higher. I'll likely be too sick to travel back home for visits, and because of the intensity of this flavor of radiation, the side effects can last for 2-3 months after treatment stops. Yes, months. Proton therapy has less "splatter" so can more accurately minimize chance of damage to my temporal lobe, but my eyes are still at the same risk.

This feels like thee most important decision of my life. Because I'm called to walk this current path like I've been walking the others, I have to go with my gut. If the Seattle option had been able to give a definitively better long term prognosis, I would go there, but at this point, I'm going with quality of life. Taking the doctors best scenario of 6 years, picture a big 'ol pizza cut into 12 slices. Being away and incapacitated for almost 6 months is like taking away one whole slice of that already too-small pizza of life. Not gonna happen! I've decided to stay here and get treatment at OHSU. And while I'll still have maybe 3 months total of not feeling well, at least I'll be present to witness the kids' activities and enjoy beautiful moments of laughter and connection with all those I hold dear.

When faced with choosing between bad or more bad, where neither option has a clear cut good result, then you do the best you can weighing all the factors. I'm aware that others may make a different choice. When examining what matters most to me, my frame of mind, comfortable relationship with the doctors, and closeness to my kids and all those who love me is just as important as the preciseness of a laser beam. So here's the plan moving forward: Treatment begins on July 18th and  will last 7 weeks. I'll have 2-3 hours of chemo every Monday and then radiation Monday through Friday. It will be intense, but I will find a way to handle it.

I want you to know I am hopeful and my faith is deeply rooted. The medical guesses of reality are not always the same as what Spirit has planned. My doctor told me to pray for a miracle and so I will. I don't believe in just giving thanks after the fact. I believe in expressing gratitude upfront knowing that it is already done. I also know that I am not the one who gets to determine what that miracle will look like. There are some things that we just can't control in life. This is one of them. As I've reflected back on my life many times, I've always seen how one thing perfectly led to another, even though at the time I may not have understood or been able to see that. The Divine unfolding has always brought the right and perfect people and circumstances into my life that allowed me to open more, to love more, to stretch more. Why would this be the exception? Just because I REALLY don't like this one and certainly don't understand it, doesn't mean that it isn't here to serve a purpose. And so I trust that knowing. I make space for the miracle, and wait to see how Spirit will use this to open and grow me even more. I reaffirm my desire to walk this uncomfortable road with as much grace and courage as I can muster, and I surrender to the flow of life.

I have a request of all of you (besides prayers of thanks to affirm that miracle!). Please don't get weird!! I've already noticed that the "C" word causes people to avoid you, to be uncomfortable, to run. Please don't. I know there's nothing comforting to say, so how about just sharing a hug, or a joke! I want to remain Lorena and not become the girl with cancer, the one that causes stirrings of whispers when she enters a room. Perhaps this is something we can all learn. No matter how it ends up, let's just be real and honest and playful with each other. I know the subject of death can become the giant elephant in the room. I want my room to be filled with loving friends and family, not elephants! So let's just talk about it. And really... none of us are going to get out of this experience alive anyway.

One of my close friends knew when the body scan results were to come in, and when she didn't hear from me, called the next day and said, "Ok, I've given you 24 hours to wallow. Just tell me what they said, and whatever it is, we can deal with it." Amen. Whatever comes, we can deal with it.

HUGs to all of you!

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