Blessed in all the ways that truly matter…

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A week ago today I saw my Oncologist to go over the results and my diagnosis of both Plasma Cell Neoplasm and Myelodysplasia (MDS)… At that time we learned the she wasn’t the Doc for me as previously explained. But she had served her purpose in ordering the Biopsy and FISH tests etc that have helped us learn more about with is going on with me… Anyhooo she also put in for the 2nd opinions which will likely be soon, because they wanted the PET/CT Scan first to have even more info… In just one weeks time since that appt the insurance not only approved the PET/CT Scan (which is $10K scan-because it was a head to toe and combo scan)… but it was scheduled the day after it’s approval. I had it done this morning. That is crazy fast for what we are used too. Disc in hand… and Radiologist report should be complete in 24-48 hours- guessing that is based on workdays and not weekends, lol..

So while there is much we miss being so far from home, we know that we are exactly where we are meant to be, to best deal with what must be dealt with… Want to thank you all so much again. The calls, tests, emails, comments…. the love, the prayers, the positive vibes mean the world to us and help strengthen me more than you can imagine. I have my moments, like any human being, of weakness. Then I read the comments, the emails, the texts, and think about so much that people have reminded me of, about who it is I am, and what I’m capable of… I have been so crazy blessed in this life, far more than I ever dreamed possible of… I have never measured myself by the $$$ in the bank, the house I live within, or the car I drive… I measure myself by the home I have in others hearts, and the peace I can be at with myself by the way I strive to live my life each day. I’m far from perfect and I’ve screwed up and made shitty choices in my life… Who hasn’t? Thats how we learn. How we grow. And we become the people we are, and hopefully the people we want to be. I’ve made almost every choice in my life based on my heart… even when my mind said wtf… haha. My body might be a little out of balance right now, but my spirit, my heart and my soul are balanced, and alive as ever…

Core Bone Marrow Biopsy Results Are In…

I know that a lot of people have been waiting and wondering on my Core Bone Marrow Biopsy and Aspiration and FISH test results. I appreciate all the emails, texts and calls. I’m sorry for not having answers sooner. I rec’vd everything back last week and early this week, and as a lot of different things were being looked at. I was given the diagnosis’s at that time, but was awaiting my appt with my Oncologist today to ask the right questions, learn more about treatment, options etc… and be sure she agreed with the diagnosis. I also need more info because one diagnosis wasn’t clear on which type, or what stage I was in etc… It’s all a little overwhelming to say the least and I’m all talked out calling my parents and explaining as well. So thought it easier to do an update here so questions could be answered without me needing to talk to everyone. I’m sorry we’re just super burned out right now and I’ve been fighting other infections at this time as it is…

Sooooo what we know at this time so far is that I have MDS- Myelodysplastic Syndrome (a rare blood/bone marrow cancer) … I also have been diagnosed with Plasma Cell Neoplasm- needing more clarity on whether I have plasma cell leukemia or multiple myeloma. According to Doc both things suck. Both have little treatment options. Chemo is the only option for both, and I’m not a candidate for chemo and I am choosing not to be one anyway. A choice we had already made. Killing me and my cells more is not the answer when so many of my cells are abnormal and this crap is not only translocating chromosomes, but it’s deleting so many of my actual genes. Parts of me that make me, ME. These two bitches are gonna have a fight of their lives on their hands.

My Oncologist, who didn’t seem concerned which type of Plasma Cell Neoplasm I had was since the MDS in itself is so much, lol. And she doesn’t feel all my other symptoms of chronic fatigue, weakness, body and bone pain and weakness, night sweats, weight loss for no reason, visual changes and such, well she feels they aren’t caused by the cancer or MDS (even though the symptoms are all listed as immmm symptoms and I’ve been dealing with them for so long, and far longer than when we just learned of what MDS, and Multiple Myeloma even were… Anyway she still wants to look at things like Rheumatoid Arthritis to explain the bone pain and weakness. And even though we took like 32 vials of blood the time before last and ruled out every STD, Hepatitis, HIV, Lupus and you name it, it seems she missed checking for the Rheumatoid Factor… Whatever add it to the list and we’ll check it…

Okay the productive aspects were that she referred me to the Mayo Clinic so that I can get a second opinion and actually have a team of experts look at things more… Like the fact that I have two spleens and 3 kidneys now, along with the neurogenic bladder and the ever growing complex cyst on my other kidney… That with the 2 years of low white blood counts that no one ever wanted to look into because their were no other flags. Well now we have tons of flags and finally the diagnosis of leukopenia, and neutropenia… MDS, and Plasma Cell Neoplasm…The leukopenia and neutropenia are my low levels of white blood cells which both leave me wide open to infections, germs etc.. Hence the trouble not getting sick every time I turn around and someone coughs lol… Anyway… sorry there’s been so much going on, and the biopsy to us made all other things make a lot more sense, but this Doctor still thinks there is something more going on and actually apologized for ordering the Biopsy and FISH tests for myeloma and MDS, because she is worried that I will now suffer from anxiety and depression in learning I have these diseases/disorders and no available treatment. Of course we’d rather know… That’s how you find a way to fight something, is knowing what it is you are fighting. Ignorance is not bliss, at least not in my case, and esp not when I feel like crap 24 hours a day and went from being the energizer bunny to a big lump of poop. lol… And this Doc so doesn’t know me a bit. I don’t do anxiety and depression, lol.

Okay also being referred to another Oncologist and Hematologist who specializes in bone marrow, blood and plasma disorder cancers. And she has ordered a full head to toe Pet Scan. It’s important in myelomas to see if there are tumors within the bones and inside the marrow. She said  we can just do a skeletal scan, should the insurance not approve the Pet Scan, but we all agreed the Pet Scan would allow us to see a whole lot more. Insurance has been great so far and approved everything that has been requested because it’s been necessary. So I don’t see this being any different.

We are going to take a much more holistic approach to healing my body. We are going to find harmony for my mind, body, spirit and soul and we will heal my body- each and every single cell in there… I have beat the odds so many times and found my own routes outside Western Medicine to do it before, so this will be no different. I believe in miracles, I have faith in all that I am capable of, all that God, the Buddhas, the Angels and all that love is capable of.

Anyway I am fine. I’m tired. I’m disappointed in a Doctor who lacks empathy to be honest, and who honestly is awkward around people and crying, (my gawd it was like 10seconds) something you think she’s experienced more than once when diagnosing people with fkn cancer. Sorry my BAD!!! But her honestly just wanting to send me elsewhere because her specialty is chemo which she repeated over and over and over to Matt and I, and wasn’t listening that we don’t want chemo and knew I wouldn’t be a candidate anyway, so why keep beating a dead horse? Geez. She couldn’t keep eye contact with me, although when she walked into the office, she made me move from the exam chair to the chair beside her because she said she needed to see my face and look me in the eyes when she would tell me the news. Then she tells me, which HELLLLOOOOO we already knew because we had all the paperwork that she had… anyway then she gets up and moves away from me and goes the exam chair and looks only at Matt, and awkwardly says sorry. Seriously how you gonna be a Doctor and not have empathy or be able to look people in the eyes?

When we left Matt said, she is so not the right fit or the right Doctor for you, he said she doesn’t even like people. lol. We are grateful she ordered the tests that she did, the procedures, and scans and such, and we’re grateful for getting some answers. We are not grateful for her being an inside the box person only, and not willing to go outside the box at all. And for being someone who actually thinks it would be better for us not know, and to just die when the time comes, since average survival rate for MDS intermediate 2 is 14 months. And why bother knowing survival rates for Myleloma lol.

Well let me make something really clear right now. I am not a statistic. I am not the norm. I am not any case study. I am unique. I am an individual. I am a believer of all things being possible in this life. I have spent my life loving this world and the people in it and doing everything and anything I can to help others. And I have known the greatest joys in doing so. I have loved and been loved. I have lived such an incredible life, and I am not done doing so… We will find a way through good things, and positive things and ways that nourish the body, and re balance my entire body out… We will find harmony again.

I want to thank everyone for all the calls, texts, emails, comments and messages… For all the prayers. All the positive thoughts and energy that you’ve been sending our way. I thank you for praying for the surgical team and all Doctors involved with my case and their important support staff. Pray for my Oncologist to grow a heart. lol. Kidding. Not. My family is scared, but they also know what I am capable of. They know who I am better than most and have every faith that together we will do more than find a way through this… We will do more than find a way to survive this. We will together find a way to thrive… I love you all so very much. Please also know I respect everyones choice to make whatever choices they make to heal their body, whether it be chemo, radiation, medications, Chinese herbal remedies, holistic remedies and healers, hawaiian healers, prayers, you name it, I support everyones right to choose the best option for them, based on exactly what it is they are fighting. What we are fighting and the condition my body is in, well we’re making the best choices for me… And I thank you all for supporting our right to choose as well. I am not giving up, far from it. I’ve never given up on anything or anyone in my life, I’m certainly not gonna start now. Any positive vibes, prayers, good thoughts and love are welcomed 🙂 Like Brandon’s new tattoos with hope (faith) and courage (strength) all will be okay…. add to that so much love given and received and I don’t know how much more blessed a person I could be…

Wishing you all a very wonderful weekend… Love love love you all so very much…

Never give up

My Dearest Husband

Wedding
My dearest husband…

Everything is going to be ok. You and I have a way of weathering even the most craziest of storms, when not a soul, not a home, not of inch of earth is left un-devasatated. You have always been my breath of fresh air, in a world so often polluted with negative thoughts, actions, and the air itself. You’ve have told me so many times that I am the most compassionate human being you’ve ever known. I would beg to disagree, because that my dear, is you. I have made my share of mistakes in this world. I have tried and failed at things. I have fallen down. But no matter what, I’ve always gotten up, always kept going and always known there was a reason for every fall, every stupid choice, and every awesome one too. I have never trusted 100% someone with my very life, until you. You have had my back through so many things, and asked for nothing in return. You’ve let me in to places within you, that no other has ever been, seen or even knows exists. We have known each other since we were just little kids. We shared an understanding, a very deep and kinda crazy connection, that made no sense, yet was the only thing in our life that truly did make sense at the time. You look at me, and you don’t see the scars, not the ones on the inside or the outside. You simply see me. You don’t judge, you don’t criticize, you don’t place expectations upon me. You simply allow me to be me. You accept my love. Something I know wasn’t easy, even though you had no choice haha. I know your pains, I know your heart, I know your wishes, your dreams and I know your demons. I know YOU! And I LOVE you more than most people could ever dream possible of loving and being loved by another. Your love, your strength, your belief in me, your constant, relentless belief in my strength, my soul, and my heart have kept me going so many times, when it seemed I had so little in me left to go.

Our life together has never been a piece of cake… But our relationship has been. Even when we both did our best to try and push one another away, because neither of us knew much what the hell to do with so much happiness, love, truth and honesty. People talk about unconditional love all the time, and we experience it with our children, and pets. We often don’t even experience it with our own parents, because we set expectations and needs upon then growing up and such. When you remove expectations and you simply except people for who they are, except their word as truth, and accept their love, because you know they give it for a reason… That reason being we’re all deserving of love, no matter what…

You Mr. Kan Hai, you are my greatest friend, my alley, my partner, my lover, my husband, my soul, and every single beat of my heart is connected to every beat of yours.

I thank you for doing far more than just being there. We have taken on so many battles over the last few years. People leave one another every day, for far less hard things. That isn’t even an option in our book. The battles, have always come from others and from whatever tests are set upon us, but we ourselves and together have never battled. Ok once I so wanted to kick your ass. But in 5 years that aint to bad. haha. Keep it real baby. Every day I think it couldn’t be possible to love you more, and then I find myself loving you even more and more and more. Knowing each other so well, you would think there would be no surprises. But you surprise me all the time too. And no matter what the day has in store, you always make me laugh, really laugh, like pee my pants laugh. I love that so very much. I love the laughter, the joy, the realness, and the love unconditioned that we share with one another every day. And I look forward to every second, minute, every ounce of time that this world will afford me with you. I have no regrets, and I would marry you again, over and over and over again. There hasn’t been a single solitary day where I had a second thought, second guessed my choices when it comes to you, or had even a doubt. Even when you drive me crazy, I can’t imagine my life without sharing it with you. I simply can’t. That is something I’ve never known before when it comes to a man. When it comes to love. I never fully trusted anyone, because my trust was always taken for granted and abused, and I because I learned the hard way, as did you, why we have instincts and that they are meant to speak to us for a reason. We may not always listen to them, lol. And we usually pay the price when we don’t.

People say I love you, often like they are saying hello or goodbye… Not like it comes from the very depths of their heart and soul. I’m so grateful it’s far more than words exchanged for us! I love that you know me, even better than I know myself most of the time. I love that if you could take the pain, take the hardships, you would do so. Just as I would for you. You warned me early on that it would not be easy. Well you had no idea I’d be such a pain in the ass either haha. I can’t even count the surgeries, the times you have had to sit out in a waiting room, just waiting for a doctor or nurse to come out and tell you that I was ok. I remember when we found out I had to amputate my foot, and the doctor explained that they may need to take more, and they needed me to elect who would make the decision since I’d be under anesthesia. You told me to please not make you do that. Please not make that be something you had to decide. Life decided it for us, and we took the longer route, lol. But you were there every single step, or hop or wheel of the way. You don’t look at me at see a woman without a leg. You look at me and see ME. And because of that, you help me more than you know to see me too. The ME, I am inside. The woman I have grown up to me. The girl who couldn’t get a date if she paid for one in high school, and just wishes and dreamed some day someone would see me for who I was on the inside, and know the beautiful being that I was, even though it may not have reflected on the outside. You often remind me you saw that person, and saw me as beautiful since you were barely in double digits in age. You saw a sweet, smart, strong, sarcastic, take no shit, but do anything for those she cared for girl. You saw me as sexy when I would close the drive through drawer with my hip each day that you came by just to see me do so. lol. Me sexy? Something I never saw myself as. Something you still manage to see, and moreover something you cause me to feel, with just one look.

You may not realize it, but every time you hold my hand, the world calms, the noise quiets and I am HOME. No matter where I may be, what may be happening in our lives, you hold my hand, and I am HOME. You did that over a quarter of a century ago, and you have done it every day since for the past few years. Whatever the battle, whatever the war, whatever the fight, I can’t imagine being better armed for it, than being beside you. I have many people in this life that I love so dearly, our children, my parents, our family and our friends, and I am so undoubtedly blessed beyond measure because I have the blessing of being able to love them, and having them accept my love. You my dear, are what helps me each day know I’m worthy of receipt of their love as well. Thank you for all that you are, all that you strive to be each day, and all that you choose to share with me. Thank you for the love you give so freely to our loves ones. Thank you for allowing me to know that whatever happens, when the time comes that I depart this world, I have the peace of mind of knowing, that you will be there for everyone we hold dear. That in itself means more to me than words could ever express…

OMG a novel as usual. Sorry. Emotional and just felt the need to leave a special note for you tonight as we head to bed that you won’t see till tomorrow while you are passing time during my surgery, or whenever you peep online, to FB… FB helped reopen the doors for us, and just seemed befitting to pour my heart out a little to you and to shout at the top of the lungs for all to hear “I LOVE YOU MATTHEW KAN HAI JR WITH EVERY BEAT OF MY HEART, EVERY OUNCE OF MY SPIRIT AND SOUL AND I AM THE MOST BLESSED WOMAN ON THIS PLANET TO HAVE THE GIFT OF LOVING YOU AND ACCEPTING LOVE FROM YOU”!!! How many people really do get to share their life with their soul mate? How many get a second chance of doing so, and it’s the same soul. haha. And you can bet your ass when my time on this planet does come to an end, which aint gonna be anytime soon, that my soul will find it’s way to yours whether it be in Heaven, Hell (since you always say you’ll be taking over the place, haha…or on a new round here on Earth, or maybe Mars. haha.

Hit a speed bump… Well maybe a little more of a earthquake style pothole…

believeIt’s time to address some things, since everyone has been asking me if I’m ok… and sensing that something is a little off. It’s time for a solid update… You all have been there for me through some of the toughest times in my life and it’s no surprise that so many of you can sense when I’m not quite me… lol.

We’ve been keeping things quiet for a while and just doing more and more tests to get a concrete diagnosis of what I’m dealing with. It’s been many months of not feeling myself in many ways. My White Blood Count kept coming back at very low levels but there were no other flags to send us in any certain direction. In the meantime we’re trying to deal with the crazy stump pain and getting a proper fitting prosthetic. Along with all the weird neurogenic bladder/ the kidney growth and then being told I had a third one? What? A lot of weird anomalies and we’ve I’ve been referred to every specialist for each thing and tackling one thing at a time while we get to the biggest of issues. Scans up the whazoo. And after more flags came back on lab work, my PCP referred me to the Cancer Center where I’ve been working with a wonderful Hematologist and Oncologist. They did a much more massive blood work up (32 vials of blood) since they now had some more direction but still not enough… That yielded a lot more flags all of which narrowed things down to this being multiple myeloma or 2 possible types of leukemia. We’re still hopeful they are wrong, and that it’s just a disorder or very early stages. We will know a lot more soon. They’ve ordered a Bone Marrow Biopsy and it’s not your typical one since multiple myeloma is your plasma cells… In addition to the normal portion of the bone marrow biopsy and the bone marrow aspirations to look at lymphomas, leukemia’s, and such they also need to run Multiple Myeloma FISH and MDS FISH Studies to learn a lot more specifics about my cells. They will be removing 10x the normal amount of bone marrow, bone, blood and plasma so all tests can be done through one surgical procedure instead of repeated ones which is a positive. Apparently this type needs to be done in a surgical center and with anesthesia. It’s been a very emotional time to say the least as only my family has been informed of what was going on.

I will be fine. I’m always fine. I am not one to reach out and ask for prayers. But I’m doing so now. Please pray for the surgical staff, the hospital, the Oncologist, and for some real solid answers to make sense of all the laundry list of symptoms I’ve been having. Please pray for my Ohana to stay strong and to know whatever happens, all will be ok… A Mother always knows, and as much as I tried to pull things off at the Holidays and put my best smile and face on, my Mom privately asked if I was ok, had I been loosing weight, was everything all right. That’s my Mom:) We had to wait a bit for insurance to begin here and the minute the holidays were over I was in seeing my new PCP and getting the ball rolling. After months of headaches, crazy fatigue, loosing weight, yet eating normally, bone pains everywhere, and so much other weird little things, it was def time for some answers… They were so focused on the infections, as I kept getting one after another. So we’d run blood during one, and once I was better, and so forth.

I’ve been getting so many emails for months now from people just wondering if I’m ok, noticing I’m not myself even on FB, or not around much. You all are way to damn smart and way to loving, and I thank you. I’ve been sick with one thing after another because of the leukopenia and neutropenia. By having the white blood cells so low it leaves little resistance for my immune system to kicks shit ass. lol. No easier way to explain it. Now that we know more about the K and L light chains and Immunoglobins not being where we need them to be a lot started making more sense. One flag lead to another and to another and to more tests and this is how the story goes…

Everyone is dealing with their own illnesses, diseases, depressions, relationship issues, losses and pains… I am not unique, my story is not unique. I am not deserving or less deserving than anyone else in this world. But I am sure as heck not gonna give up and will fight with every ounce of who I am… Any prayers, any positive energy, and any love you have to send out, if even for a second, I know will reach me and reach where it’s needed most in this world. One of the many blessings I’ve had over the years is the most incredible support system any person could ever have. My family and friends are the greatest gifts I have ever known in my life. And I know right now they are afraid, they are worried, and they feel helpless in what to do… I ask that you all help through your prayers in giving them peace of mind that all will be ok…

The Doctors here haven’t been messing around. The waiting time when they order tests is so fast. Waiting on insurance’s to approve tests that costs thousands of dollars takes like a day or two. I’m so not used to that. Monday I saw my Oncologist and she went over everything with me. She put in for a Bone Marrow Biopsy and all these additional studies from such… Wed they called me to let me know insurance approved it and that the surgical center would be calling me the next day to schedule. This morning they called and I’m scheduled for Tuesday at 6am. Holly smokes, after years of Kaiser and waiting forever on things, it’s a trip. We are so grateful.