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.