Still me.

Published January 19, 2016 by queenmaynie

This is so hard. I usually find writing to be effortless, therapeutic almost. This entry, however, has me procrastinating, starting and stopping and even now as I try once again I am aware I could hit the delete button at any moment.

I know I need to write an update. I have put very little out about my condition since I came home from the hospital a few weeks ago. So, here we go…

Let me start by saying that more than anything, I am a lucky person. Maybe the luckiest. I have the most amazing family and friends who have sent many messages of love in one form or another. If I haven’t written back, or returned a call, please forgive me. Please know how grateful I am and how much your support helps me through these times.

Let me get right into it… my disease has progressed a great deal and my health is very bad. There it is. There’s no way to sugar coat it, and I’ve never been a big fan of sugar coating. Let me be clear, when I say bad, I mean terminal. I mean end stage. I mean I am dying.

In late November I started a chemotherapy called Yondelis ( Trabectadin) for which we all had high hopes. It had just been approved by the FDA for use by people with LMS, and it has a decent ( decent meaning 48%) chance of disease stability and a 10% chance of shrinkage for  metatastic LMS. This may not sound so great, but for us LMS’ers, these are pretty good odds. The plan was for me to have two rounds of this chemo ( each round being one infusion every 3 weeks). After the first round, I was sick. Very, very sick. This was my third type of chemotherapy and I guess my body and chemotherapy really, really don’t mix. While some receiving Yondelis don’t seem to have very severe side effects, I was knocked out. I mean, nausea, headache and the worst imaginable fatigue which kept me in bed (except to go to the bathroom and occasionally try and eat) for 8 days straight.

I had been through two rounds and was 4 days away from being scanned to see if it was working when I started to cough up blood. This started quickly and was alarming. I was taken to the ER shortly after it started, and by the time I got there it had calmed down. After doing x rays ( which I literally rolled my eyes at. I mean, x rays, really? I was covered in cancer inside my diaphragm and all around my lung and pleural space and I knew an x ray was useless) the ER docs had decided to send me home. They were going to call my doctor to let him know. I was exhausted and figured they had no clue that I wasn’t exaggerating the blood coming up or how sick I actually was, and figured the next day my own doctors who know me and who I trust would deal with this. No sooner had they told me that I was being discharged when the coughing started and quickly became worse than before.  Bright red, liquid, large amounts of blood were coming up for at least 30 minutes, and after the docs stopped staring at me with their eyes about popping out of their heads, they decided to admit me to the ICU. No shit docs. No shit. ( Gotta love the ER).

I was in the hospital for a week, that being the week of Christmas. As much as I knew this coughing up of blood wasn’t exactly good news, I had no idea it meant that my disease had progressed a great deal and was literally choking my arteries. After two Bronchial artery embolizations, I came home from the hospital with continued coughing and bleeding, although not quite as severe. There were no more arteries they could safely embolize, and with each day at home I suffered from this constant cough, and the coughing kept me up at night. I stained several pillows with blood which of course really pisses me off. Priorities you know.

There was significant growth of my disease both inside of me as well as the very large tumor growing out of my paraspinal muscles on my back. The chemotherapy would be stopped. It had become clear that my LMS was not chemo sensitive. I had now been on the top three chemotherapies for my cancer and it has never worked for me. NOT CHEMO SENSITIVE. I knew that my days of trying any more chemo were over. It turns out my doctors agree with that decision.

The next plan of action was to try some radiation to help with both the pain of the back tumor as well as try and resolve the continued coughing up blood I was having. Two weeks ago I had very high dose radiation over a very large area in only 5 sessions. Because of those factors, I once again suffered very bad fatigue as well as extreme nausea and lack of appetite. I am still trying to overcome those side effects and am a little better every day.

The radiation stopped the bleeding, and for that I am so grateful! I have been able to get some rest without coughing and choking on blood all night long. Unfortunately it did not help with the pain and in fact the tumor on my back seems to have snowballed since treatment. Pat measured it for me today and this tumor, protruding from my back, measures 26cm x 10cm x 5cm ( 10″ x 4″ x 3″). It is becoming unbearable, both in pain and function. Even standing for more than a few minutes is difficult, and between the horror happening inside of me and the pressure of this disaster on my back, I often feel like I have an elephant on my chest. My breathing is labored just from climbing a flight of stairs. It is hard to believe since just 10 weeks ago I was teaching my crazy fitness classes and kicking peoples asses for a living.

I pushed my doctor for a timeline. I hated to do it, but I am a control freak ( really??!) and I would rather know so I can plan. I won’t share that here, I feel I must keep that close for my family, and also, because it is not an exact science, I wouldn’t want to make my doctor uncomfortable for telling me. I respect his candor in giving me his educated guess, and I am better for having the information. But as we know, anything can happen…. so I am trying not to think too much about that except for practical purposes. Just know this: I can feel what is happening to me, and I have to say, I know what it means. Something changes when you take this turn, and you just know. I know.

We have been given one glimmer of hope. I have been able to get my hands on the immunotherapy drug Keytruda, the same drug that was in the news recently because Jimmy Carter is taking it and his cancer has all but disappeared. Now, before anyone starts doing cartwheels, let me be clear: this drug has not been tested on very many sarcoma patients. And by not very many, I mean pretty much none. There is no reason to think it will do anything for me. It could even kill me…. to which I say, get in line Keytruda, my cancer may beat you out for that one. I was able to get this drug “off label”, meaning it is not approved for my cancer but the drug company, after my doctors appealed to them on my behalf, agreed to let me have it. These immunotherapy drugs ( there is also one called Opdivo, basically the same mechanism) have worked very well for certain cancers such as lung and melanoma, and are being called the future of cancer care. Trials are now in the works for combinations of these drugs with other drugs. Researchers are trying to understand the best way to use them, and although the next five years or so can be the revolution of cancer care because of these drugs, I fear it may be too late for me. However, it is very exciting that I at least have the opportunity to try it. I have nothing to lose at this point.

I received my first infusion of Keytruda almost two weeks ago at the same time I did radiation. So far it hasn’t killed me ( as you can tell, unless this is a ghost writer, which I assure you, it is not) however, my cancer has continued to progress as evidenced by the huge thing on my back making me look like Igor and the increasing pain inside of me. It isn’t hurting me todo it and as long as it stays that way I will receive my second infusion on 1/27. Sending me some prayers, thoughts or great vibes that day would be most welcome.

In the meantime, I have now included the palliative care team as part of my care plan, and when the time is right, I now understand what it means to bring in Hospice care and I am open to it. Unfortunately for me, making me “comfortable” is not so easy because of my Mast Cell Activation Disease since my body reacts to most pain meds, and I will need to be on very high doses of antihistamines and IV Benadryl every 4 hours once it becomes a necessity. I am almost there…. my pain is increasing a great deal, and I don’t know how much longer I can hold out.

I want to put this out there: Pat and my boys, they are devastated. No matter how I have tried to prepare them for this eventuality, there is really no way to prepare. Our hearts are aching. I am sad… I will miss so much. I will miss so very much. Engagements.Weddings. grand babies. Purchasing homes. Laughs, tears, advice giving. Vacations. Beaches. Shopping. Friends. The best years of our lives. Peace. Calm. Love. Love. So much love.

There is no easy way to do this. It isn’t glamorous. It isn’t just semantics. It is happening to me, and it sucks. When you lose pieces of yourself that make you who you are, you hold on to whatever you can. Some days that means putting on mascara, or laughing at something ridiculous even when you feel awful, or getting annoyed at something stupid like dishes in the sink even though you know it doesn’t really matter. It mattered two months ago, so, me being me, I guess it still does, lame as that is. When I go to appointments I try and look my best, because makeup and clothes have always been fun for me, and at this point, I don’t go very many places except medical appointments. Just because I’m really sick doesn’t mean  all of a sudden I go out in sweats. So, I glam it up the best I can. You hold on to those things because so many other things about being you have already slipped away. You just know they have, no matter how much you plead with life not to take it all from you. So you hold on to what you can.

I know what you will want to say to me…. you want me to keep fighting! To kick cancer’s ass…. that I will beat this! Some will ask if I have tried this treatment or that, or if I have tried the place in Mexico or the such and such diet. And I know, with every beat of my heart, that those things will be said because  I am loved, and I couldn’t be more grateful. But I want to say this up front: I have done every reasonable treatment available for LMS. For my cancer. I have had many surgeries. Many treatments. I have the very, very best medical professionals that have kept me alive for over 6 years, despite the fact that my disease has been extremely aggressive. I have already beaten every odd there is for my situation. I have already beaten cancer. I have already kicked it’s ass, I have fought and I have won. When my time comes, I will not have “lost my battle to cancer” and will be so disappointed if that is what people say when referring to my journey. I have NOT lost. Right now, I’m still here, and as long as I am, there is hope. However, I have already won. My life has been filled with joy through sadness, triumph through struggles, success through trials, love through it all. That is winning. I feel victorious. I do. I WIN.

So, maybe, just maybe, if the planets align and it happens fast, this Keytruda will kick in and maybe it will help me. What little energy I have left to fight to stay here even a little longer will go towards that glimmer of hope. I have always said that anything is possible.

However, as things change quickly, I will focus on the relationships that I am so blessed to have. I will try and plan for my Pat and my sons and set them up with the knowledge of all that I want for them in a world where I am no longer. I will shower them with all of the love that I have for them, which should be enough for an eternity, and I will take every chance I can to continue to maybe do some good in this world while I can. Even if it’s only by sharing my experiences. I hope it will do good.

And as long as I still have breath in my body, I will love big. In the end, while I may lose most of the physical things that make me, well, me, perhaps in the stillness of that reality, the true nature of my being will then be the brightest and the loudest… and that will be the love that lives inside of me. And that will be enough.


80 comments on “Still me.

  • Reblogged this on hil clauss and commented:
    Love and light. It is too soon for this woman that I have been blessed to know. Peace in your final journey here, love always, and many thanks for your shining presence in this world. I know your spirit will exist in volumes around your family. May they feel it with all the power, beauty and strength you have and will always be. Till we meet again. xos

  • Through a friend’s post I have come to read your eloquently stated and most dignified words. Thank you for putting a face on the disease and experience in that we can all learn how to live in a deeper more connected way. While I don’t know you personally, I do recall you ahead of me in school and at one point friends with my sister Melissa. Please know that you have affected me with your profound insight and courage to share the unimaginable. Thank you for such an inspiring shout to live our best lives. I hear you. I will be praying for you and your family.
    God Bless,
    Dorrie Tomlins

  • So much respect and love for you — always. Very grateful to be in the good company of your admirers. You’re as badass as it gets.

  • Vicki, you write and generously share your struggles so beautifully. There is no way of knowing how many you have touched. I wish you peace. The love that surrounds you is evident. I hold you in my heart. Love, Nancy

  • You are and always will be a class act. I am shocked to hear how sick you are at such a young age (my age). I remember you with this big, bright smile that still shines through in the pictures that I see on Facebook. Thank you for sharing your journey. Keeping you and your family in my thoughts and in my prayers. XXXOOO

    • Well ,you are the spitfire you were back when the BOYS were in 1st grade!! I admired you then and still do and will forever!! I feel the same as you do about our different situations! Will do what needs to be done and I will live my life ! I have no expiration date yet but it is inevitable anyway!! You are special in my thoughts!! Love ya !

      Linda Ruger

  • Much love to you and yours Vicki! We all know there will come a time when the balance will tip between health and not, we just hate to know the time is now. We want to believe there is ONE MORE thing we can try, however knowing that there is not, or not time to try it. Love, light and prayers.

  • Vicki you are an amazing and beautiful person. Your words are so enlightening and beautiful. It is so generous of you to share your journey. Sending you lots of love and light.

  • Vicki,

    I had the good fortune to see your talented sons in concert in Rutland VT. While I watched them perform, and listened to them speak between numbers, I was thinking how proud their mother must be. And your influence in their lives was apparent. And all of this was obvious from my balcony seat in the Paramount theater. Just saw their Facebook post and followed here.

    I wish you and your family comfort, love and peace through your journey.

  • You are and always will be you no matter what this damn disease has taken. Vicki! You win by sharing, and loving. I don’t know you but read your post via my friend Danielle. I have sent my loving prayers for the 27th. My heart aches for you and your family as I read this. It is well written and poignant. Thank you for sharing something so incredibly intimate with us. I was reminded of my sister, Marilyn, that died from Hotchkin’s Disease, all the suffering that she went through. There was a time she insisted that I witness her inject her medicine through an IV by her collar bone. She wanted to be recognized for herself no matter what the diagnosis or treatment. You are brave. It can be anyone of us and I’m sorry for you. I don’t know you like I said, but am sending my love. God Bless you and your family.

  • Vicky, I love you and your family forever and an eternity! You are the most amazing person
    I have ever met in my entire life! Stay strong. Many prayers and love to you Pat and your boys from all of us Zavodsky’s

  • You are the bravest person that I know . Thank you for your beautiful words. You have been an inspiration to everyone and thanks for sharing your journey with us. Jackie asked me to keep you and your family in my prayers. It is my pleasure to ask God and all the angels and saints to pray for you . Peace be with you Vicki and may Gods blessings be upon you. Love, Carol Senatore.

  • You still AMAZE me! Your light, your love, your spirit, your strength, your continued hope will live on. Over the last years you have taught me what it takes to be strong. Thank you for your friendship and your love and especially for the lessons! May you find your peaceful place and may God continue to watch over you and bless you. You are the strongest woman I have ever met. I’m so blessed our paths crossed when they did. Love you much Vicki and I, too, continue to have hope. You, pat your boys and your family will be in my prayers. Love you Carolann 💓💓💓💓

  • In the short time I knew you you were able to touch my life beyond belief! I truly admire your incredible fight, spirit, outlook and attitude! Thank you for all you taught me! Keeping you and your family in my prayers ❤️

  • I love you………thank you for being you……our times …our talks……precious……… have been a guardian angel for me here on earth

  • Dear Vicki,
    Thank you for your beautiful words and sharing your difficult experience. I am praying for you and your family. May God bless you all and bring you comfort and peace. 💕
    Jodi Marinacci

  • First of all I believe in miracles, and I continue to pray for one for you. Secondly, how you find the where-with-all to be so eloquent at this point in your journey, I have no idea. I can’t even find the words to express how truly sorry I feel for the life you may miss. You have raised three wonderful sons who possess your love and grace and sense of humor and conscientiousness of your fellow man, and so many more gifts you have given them, so you will most definitely live on in them. My heart breaks for Pat. I am grateful for the little time we spent together watching those boys of yours hone their skills and journey to their place in the music world as well as their place as fine human beings. So much love being sent your way. So much love.

  • Vicki, you’re one of the bravest women I know. I’ve never had the opportunity to meet you face to face, but from everything your boys have told me, you ARE a unique shining star.

    I am so, so very sorry about what you’re going through and what you’re facing. You have so much dignity and grace in the face of the unimaginable.

    Please know you and your family are in my prayers daily.

    Much love,


  • Wow…what a beautiful, raw, and honest writing, Vicki…
    I, too, truly believe in miracles; however, I also understand the gravity and reality of your current condition and the road you face, barring a miracle. I pray the Keytruda will be a game changer for you! I’m praying for you, your husband and your boys, no matter what comes next.

    I had the pleasure of meeting you, Pat, Sean and, I think, Dom (pretty sure your youngest wasn’t there) in 2006 at a gathering after an east coast HBF show. I believe it was Sean who ‘knew’ me from the HBF Board and, at the young age of about 13, introduced himself to me, asking if I was who he thought I was from the Board. I was so tickled to get to meet this awesome young man, I think I asked you if I could hug him. 🙂 There were a lot of big smiles all around that night! From what I could tell then (and since), was that this was one exceptional young man, who already had an amazing life story, with a great love for his family, and a special love and appreciation (beyond his years) of music. Exceptional kids come from exceptional parents, of which you and Pat are, no doubt. Seeing the outpouring of love, support and kind words here merely confirms your awesomeness, much like the three incredible young men who call you mom.

    Count me as one more ‘fan’, Vicki, who is keeping you & yours in thought and prayer, asking for healing, comfort, and enveloping peace. It’s clear you are greatly loved. May that love carry you at times of weakness. Keep leaning into that love, laughing, and skipping the sweats; i.e. keep being your spectacular self!

    Much love & God bless,
    (aka Red Rose Johnson)

  • Reblogged this on Dellymari's Blog and commented:
    Though I do not know her personally, I am compelled to share this woman, Vicki Kelly’s, eloquently written true journey. She is brave beyond words. It evokes tears, sorrow, love, gratitude. I am personally reminded of the experiences shared with my sister that passed too young and full of life. This, however, is Vicki Kelly’s story! I am touched deeply by it and ask that we all keep her and her family in our thoughts and prayers.

  • Dear Vicki
    I often wonder why God chooses who he does to be his angels. It seems he wants the best on earth to be with him sooner then we want. While we haven’t spoken in years, too many to count,I will be praying for all of you. Your journey has been a difficult one, and your recent entry of Still me caught me off guard and made me cry out loud. I have a tough skin as I see and care for so many kids who also are going through chemo, radiation, drug trials… I will always remember your big and spirited personality when we were in school. You are a hero to so many for being brave, and for fighting like hell! May God bless you and your family during this difficult time.
    Jill Dyer DelBello

  • Vicky,this is Patti Abernathy from St.Paul’s. I want you to know that you are and always have been in our prayers and thoughts and those of the parishioners. I still have the Christmas ornament you gave us for advent family exchange. It’s the most beautiful one we have
    . Thinking of you today 😊.

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