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Hello my lovely family and friends. I make no promises that this first post will be coherent, short, long, happy, sad, etc..I am just going to start writing…I don’t mean to leave anything out, so at least this way, it’s a springboard. I also hate that it’s been 2 weeks since this journey started for me, and I feel like I’m still trying to get to the important people in my life to tell them, while others are finding out ‘through the grapevine’, so the leaks are there. The other unfortunateness is that 4 in the morning is when I’m awake, and it’s quiet, so I can try to gather my thoughts and make this as coherent as possible, even though I’m exhausted, and just want to be able to sleep. Soundly. But, that hasn’t happened in the past 2 weeks, so why would it start tonight?

I was in Jersey up until the 20th of April. On the early morning of the 21st, I went to the hospital, as I started having seizures. I was home for 2 hours before seizures started, so I am so thankful that I made it home before this started, and that I wasn’t still on the road with my family. First of many blessings on what is going to be many for me during all of this.

The end results? I have stage 4 lung cancer, the main tumor in my right lung. I have 2 tumors in my spine, both also stage 4. I have a brain tumor on the left side of my brain. It is a piece of the one from my lung, and is not a “growing” tumor…but it is in a critical spot, and it has to be dealt with, or it will just continue to jeopardize me. I have been given my “life prognosis”, and because I don’t want to give that prognosis any power, please don’t ask me to tell you what that is. Know that I am the kind of person who is determined to do anything and everything within my power to ask for, to do, to transform, to make sure I am still here for a very long time.

Right now, my medical plan is this..I have already started radiation on the brain tumor. I go every day. I will go every day until the 10th. The brain tumor needs to be taken down to a size where it is stable enough to allow my body to go through chemo, while not presenting long term, unfixable damage from the swelling and the seizures. On the 10th, we do another MRI to determine the success of the radiation. If the containment of it is out of critical, I will start chemo between the 12th and 16th..I will do 4 rounds of chemo, each visit 3 weeks apart. Since we have no idea what the particular kind of chemo I’ll be in will do to my body, we have no idea what my quality of life will look like but I’m really hoping that between chemo rounds, I’m able to live some normalcy of life, and for me, still getting to Jersey for part of the summer must happen! I cannot even begin to fathom having to do this journey without the ocean. After the first 4 rounds of chemo, that will bring us up to about September..at that time, if we’ve seen significant improvement in the containment of the tumors, we will do brain surgery to remove what is left (if any) of my brain tumor, and then heal from that. Once that is healed, we move on to my options with the tumors. Do I need more chemo? Have any new tumors developed? Do I qualify for any clinical studies happening? Am I ok and healed enough that I move into a maintenance care type of program and get back to living life with a lifelong, maintained care disease?

So much has happened in 2 weeks, I wish I had time to share every bit of it with you and keep you up to speed. There have been great things, really great things. There have been people that aren’t, and they will not be my focus and I will not be wasting any precious energy on anyone that comes to me through this in any way other than an honoring, compassionate, open way.

My mom and my brother are here. They are currently at my house and as time goes on, they will be looking for a place to live. They are subletting their place in Cape May, and will be back and forth once we have more of a routine with chemo. As most of you know, Mike and I are not together, and haven’t been for over 3 years. We have continued to live together over our breakup, as we felt it was more powerful to keep us together as a family, while trying to navigate what that would look like in such a Nontraditional role. We still aren’t sure what that will look like, as both of us have to keep moving our lives forward, but still working to find the balance on now how do we do THIS and still come out of it intact as a family? We have had many, many talks. We’ve had some hard talks, some really not fun, some truly great, but all very necessary. We are both committed to doing what is best for us as individuals, as well as parents of these 5 beautiful children we’ve spent our whole lives loving. We ask that during this time, we have your support and respect for whatever decisions we make, because we are coming to them with the intent of getting all of us through this journey as sane as possible. People will be here to make sure I’m taken care of, but I don’t need wall to wall people living here, it will only serve to drive me bonkers and slow down what I need to do to heal. I have an absolutely great support system, with many friends and great community to get me through this. The hospital and team of doctors in charge of my care have done nothing but impress me. Well, except for one..The one who delivered my diagnosis. She was rude, infeeling, insensitive, blunt, and very matter of fact, go home and write your will, why are you asking about options? So I have as little do to with this doctor and her limiting beliefs as possible. My long term care Oncologist I have met once and I fell in love with her, she will be amazing. I see her again on the 10th, when we determine if we can move on to chemo. All of the nurses, all of the social workers, all of the support staff has been great. I feel I am in the best possible care I can get, and I’m thankful to be in Vermont for this. Most of you know I have very nontraditional views on spirituality and alternative healing, so I will also be relying very heavily on my past experiences, knowledge, and faith as well. My firm belief is that by blending as harmoniously as possible, the Western with my beliefs, will bring me the best possible outcome. This is huge. Just so overwhelmingly huge. Trying to process the medical marvel itself, and what I have to do, keeps me so wide awake because my brain never shuts off. But to be thinking in the magnitude of what this means to me, my kids, my family, my friends…and the ways in which this will forever change anyone who walks this by my side with me..it’s a huge huge responsibility.

Like I said, 2 weeks isn’t alot of time to process everything there is to do, everything I have to get ready for, nor is it enough time to tell everyone I want to tell. I am going to keep up this website and journal, and we will post stories, updates, pictures, everything. The kids have even asked to make sure they can go on to post their views and feelings as well. So I’m excited to get that going, I think it’ll help tremendously with all we have to do.My kids are all doing ok. They take turns freaking out, but for the most part, they are taking their cues from me on how to handle it. As long as they are open and honest with me and our support team at all times, we’ll have each other covered. This has already changed each and every one of them, permanently, and we are still really waiting to even get started. But you guys know me, I am using all of this “time” to make sure any and all preparations we can do to make this as easy for them as possible, to make sure they get the best care, the best follow up, the best outlook and attitude. Vital. So vital that they are well cared for, and ok, and allowed to just “be” at whatever stage they need to be in as it comes.

All I am asking of any of you, my friends, is just to think of me once in a while and if you do, let me know it. Text, quick email, comment, letter, anything at all, that lets me know you’re rooting for me, and believe that if anyone can do this, it’s gotta be me. I have too much I want still, too much I’m not willing to settle for, to call this. I want to win. I want to go through the next 50 years of my life knowing I had the opportunity, because of cancer, to have my life be something so amazing , and to have this huge transformation of self, because I was worth seeing it through. And I want to thank the universe every day for waking me up to my potential. Whatever that looks like, for however long, my life will be better tomorrow than it was today. Every day. Period.

I will share that I have had some less than desirable interactions with people..some well meaning, some not so much, and while they will not be focused on, important for me to acknowledge that there are types of “concern” I will not accept. I have had a couple of people call me at 3, 4 in the morning, drunk off their ass, telling me they are concerned that if I don’t “find God”, that I’ll never make it through this. I’ve had people with drug addictions call me and try to find out what medications I’m on. For the first week, I had people doing this weird “deathbed confessional” with me, which really pissed me off. If you didn’t think I deserved your honesty before, don’t give it to me now. I’m not Jesus, and I don’t have that power of absolution. I had people just showing up, uninvited, trying to insert themselves into my life, when they were people I hadn’t ever invited to blend with me and my kids in the first place!!! But they have decided I need them, and one person, I actually had to threaten to get a restraining order against. I am very actively involved in my community, and because all the work I do is through social services for teens, homelessness, and adult social welfare, I unfortunately have to be very very careful. I will never regret the work I’ve done, but as a result, people who aren’t quite balanced think they are helping, when really..they aren’t. I think it’s just a matter of keeping my lines drawn and it will settle down…I was very professional with my connections before this all started, so I’m not too worried.

And in the middle of all of this, still trying to just live my life. I am not working, nor will I be until this is in the stages where I have moved into the “maintenance of living” phases of any of my treatments. I am going to listen, and I am going to say that if during chemo, I have a good day, rather than spend 5 hours at work, I’m going to spend those 5 hours living. I can go back to work when I’m healthy and strong.

Radiation doesn’t really slow me down much. I am in incredible pain from my tumors, and now that I know what’s wrong with me, I’m floored that my body was able to push aside so much pain just because I was convinced that what was happening to me was attributed to 1000 other excuses. I get nausea and tired from radiation. My scalp is tender and sore, my hair is going to fall out any day..most likely, only around the sites that are being lasered, but I can feel it coming. I have other diseases that I live with every day of my life, none life threatening, but I have a blood disease, immune deficiency disorder, heart murmur, gall bladder stones (I don’t even know…it just makes me laugh..), and other things that I already combat every day, so those obstacles all create very unique challenges for someone who is about to undergo what I have to do. I have a lot on my plate. I will be using a lot of hypnosis, acupuncture, meditation, etc to continue to maintain my “normal every day medical wonders” so that they don’t have to be exascerbated by cancer.

I am not asking “why me”. It’s pointless. It makes no sense, and in all honesty, “why not?” Cancer isn’t picky who it picks a fight with, never has been. I’m no stranger to it, I’ve fought it before. Nowhere near this magnitude, but I’ve done it before. Everyone knows someone, everyone has a story about cancer. I am in a really, really, big family when it comes to cancer, and I fully intend to draw on that, find inspiration, and be inspiration. I have to. We have done Relay for Life, I have lost family to cancer, friends to cancer, but I have also seen odds beaten that seemed all but lost. I see no reason for me to not beat the odds, regardless of length of time. My favorite quote, and it is tattooed on me, “You get what anybody gets…you get a life”.

I think I’m going to stop here, and let you all digest..I am sorry it is so much all at once. If any of you have questions, please ask them. If any of you decide this is too much, and you’d rather not know anymore, your honesty means the world to me and I’d like the truth. It is up to you, how much you walk beside me, and since we are all so spread out, I don’t want anyone to feel like there’s anything to be guilty about when it comes to being in touch. I seriously mean it when I say a quick “thought of you today” text will do more wonders than you might believe. It all matters. We have all been in and out of each other’s lives for so many years in so many ways, and yet we always come back together, no matter how brief, no matter how much..we always find a way to reconnect, check in, charge each other’s batteries. But like I said, if that isn’t there for you, I’ll be ok. Life goes on, everyone is busy, everyone faces challenges every day that they have to make the best decisions for their life, and I completely honor that. I still want to know what’s going on with a lot of you, as you all know I worry about all of you, too!!! That isn’t going to go away at all, just so we’re clear.

Love to all of you, respond in your time, when you’re ready. In the meantime, know I’m plotting the most kick ass fight you’ve ever, ever, seen, and that when I’ve said time and time again that I live to be 100, it means I live to be 100. Today, that is my intention.