Two Years

Two years ago, on July 16th, 2017, my mother died. As pretty much everyone knows at this point, she had Leiomyosarcoma—an extremely rare sarcoma that we knew would eventually take her. She spent a decade fighting her ass off to rid herself of every new tumor that popped up. She had surgery after surgery, treatment after treatment. 

By the end, she was so tired. She’d never make it known, especially publicly, but you could tell. I could start to see this happening a few months before she died. My wife and I were married two months prior, while mom was in hospice. I know how completely thrilled and proud she was that day, but you could also see that the light was fading fast. She was so tired. She put on a brave face, but the truth is that you really couldn’t have a conversation with her for more than a couple of minutes at a time before she’d zone out. She was literally carrying around a bag of pain medicine that she’d continuously pump into her body all day long. It was the only thing that was allowing her to function semi-normally.

She was losing a lot of weight by this point, and although she always had that Vicki Kelly spark a little bit, she was slowly starting to lose herself. I could tell. It wasn’t all bad—thanks to the pain meds, she was pretty much able to eat whatever she wanted for the first time in a LONG time. She was eating brownie batter ice cream all day long. It was amazing. As the kids say, she had no fucks left to give.

But, of course, it was mostly really painful and hard to watch. Everything unique about her personality was slipping away. I remember spending the night once when she was in hospice care, and Kennedy and I were awoken by the sound of her yelling at her hospice nurse. Mom had always been a really calm and non-confrontational person with other people (not always with me, but that’s another story entirely), but the nurse had started trying to get her to start taking anxiety medication. She flat out refused, and started getting really angry the more that the nurse pushed for this.

That was one of the first moments that I realized how quickly the light was going out. She really had begun to withdraw from most people. She loved posting on social media and getting 500 likes (I mean, she fucking LOVED it). Getting to share her story on her blog was really cathartic for her, but at this point she just didn’t have it in her to update people on what was happening. Honestly, I don’t blame her. The nature of her cancer was such that there were so many ups and downs. So many, in fact, that I really think most people thought she’d never die. Even though I knew the day would come, there was even a part of me that couldn’t rationalize the idea of her not being here. She’d come back from the brink so many times that your brain would just condition itself to believing she was invincible.

The end of her life was really, really traumatic. I’m not here to sugarcoat anything. If you’ve never experienced anyone going through something like this, it’s difficult to wrap your head around. Two days before she died, I called her and she sounded really out of breath. Like, almost unable to speak. It seemed like it kind of happened out of nowhere, too. I didn’t understand what was happening. The next day, dad called. He said that she managed to tell him that he needed to call us and let us know that it was time to come home. We got up to Charleston, and when I walked in the house she was on the couch in her usual spot. It was freezing in the house, but she was sweating. Her eyes were closed, but they’d shoot open randomly and she’d just look around the room like she was trying to make sure she was still alive.

She’d try to grab the remote to change the channel on her TV, but she couldn’t press any of the buttons. She’d call out for my dad here and there, but she really wasn’t doing much talking by this point. Right before we went to bed, she sat up and tried to take some anxiety medication but she couldn’t keep it down. I remember staring at her trying to take a single goddamn pill, and she just couldn’t do it. The last thing she said to me after the pill came back up was, “I’m sorry. I’m so embarrassed.” 

By that point, making it upstairs to her bedroom was impossible. I’ll never get this image out of my head—my dad, as my wife and my brother Brendan watched, carried her from the couch into the guest room and put her in the bed. It was probably the most fucked up, heartbreaking thing I’d ever seen in my life. I watched my mother collapse onto the ground when she found my brother in his bed; no bladder control, no muscle function. I thought about that as I watched dad take her into the room. I thought about how my brother’s death took almost every bit of physical function out of her body. That spirit she always had was gone in that moment. And here she was, 20 years later, in the same condition. Nothing left.

I think she was tired. She was ready to go; ready to hopefully see her son again. 

The next day was a slow, brutal waiting game. It wasn’t quick at all. But I think it was painless for her. I’d like to believe it was painless for her. We just waited. We debated switching out another oxygen tube after many hours, but doing that would have completely useless and even a little bit selfish. So we waited a little bit longer. We held her hand and sat quietly as her breathing became more labored and more sparse. Finally, she took her last breath and she was gone.

I’ll never be able to erase that moment from my memory. Sometimes it’s really hard to think about her and not see her sitting there with nothing left. Thin. Frail. A shell of the woman she was even months before.

Two years later, it’s a little bit easier to separate those images from the memories of who she really was. Days go by and it gets better. But there’s one thing I’ve been struggling with regularly ever since—it’s something I care deeply about, and something I felt compelled to write about here. 

The most unfair and cruel part about my mother’s death is the fact that she had to suffer as long as she did. In South Carolina, she had no other option but to suffer. I know that this is a tough subject for some people, especially those who are deeply religious, but please try and comprehend the thought of someone close to you having NO CHOICE but to waste away slowly. As my mom said sometimes, “They put a dog down for a lot less.”

Please understand, this woman suffered. She suffered horrendously. She suffered more than I even know; the only one who really knows is my father. Why is it that the majority of states in this country don’t have measures in place to ensure that people get the choice to end their lives on their terms? It’s cruel, it’s inhumane, it’s selfish and it’s wrong. It’s not “playing God.” It’s allowing someone to go with a shred of their dignity left. It would’ve meant allowing mom to go if and when she was truly ready, without having to subject her husband and children to watching her vomit an anxiety pill and urinate herself. It would’ve meant even a little less suffering, a little less pain. There is no reason that people should have to suffer until the end if they don’t want to. It’s called choice for a reason, and if my mom didn’t want to end her life at any point she wouldn’t have to. But the fact that she didn’t have that choice is wrong and shameful.

I try to use my experience with losing mom to shed light on this issue, as it’s something I feel really compelled to speak out about. I’m not going to sit here and try to sugarcoat her death. It wasn’t a beautiful or spiritual moment where the light slipped through the window and she slipped away with a peaceful look on her face. It was traumatic, it was slow, and it was deeply unsettling. Of course, we’re not the only ones to experience a death like this. But anyone who has experienced it understands what I’m talking about, so I’d hope people are also understanding of why I care so deeply about right to die. 

No human being should have to suffer any longer than they want. Every human being should have the choice to leave when they feel they’re ready, IF they want to. Choice is an important freedom for all humans. Just as every woman has the right to choose what they do with their body, every human has the right to choose when they’re ready to go. We need to end the stigma surrounding this practice, just as we need to end the stigma around suicide. Sometimes people are just too sick to carry on. Who are we to decide that for anyone else? 

For more information on death with dignity issues, this is a good resource.

I’m finding myself feeling very comforted by writing this today. Everyone who knew my mother knew how special of a person she was, but I felt it was important to reflect on her passing and the reality of that experience. 

I think we’re all healing every day, in our own way, from everything we went through as a family. Sometimes I think about how fucked up the world is right now, and how horrified she’d have been by the current state of our country and our government. But I also think about what it would be like to have her in my life at this really special and crucial point. I wish I’d gotten to call her and tell her she was going to be a grandmother. She wanted a granddaughter so badly, and she never got that chance. My daughter will never know her grandmother, except through stories, photos, and videos. Don’t get me wrong, we’re so lucky that we had enough time to prepare for her to go. She was able to do some really special things for her grandkids, so they could grow up hearing her voice and seeing her face. But it’s not the same. It’ll never be the same, and that’s the only thing that truly makes me bitter and angry. There is no good reason, no master plan—it’s unfair. It’s unfair that she won’t be here physically to know her grandchildren. It’s unfair that she’ll miss out on so much. 

Overall, I’m not angry anymore. I’m grateful for the time I had with mom, and amazed at the impact she had on people. I’m blown away by her legacy, and by how many people loved her. She was a special person. If you don’t know, read her blog. It’s all there. I’m also at a really great place in my life. I’ve got a beautiful wife who has fulfilled my every hope and dream. She’s made me believe in more than I ever thought I’d believe in. She’s made me a better person, and we have an indescribable love. I also have a daughter on the way who IS one of those hopes and dreams.

I’m good. We’re doing better. We miss mom, but we’re all doing better. 

I just wanted to use this post as a way to work through my thoughts today, and to be brutally honest in the same way she was so often about her disease and her fight. 

I’ll never forget my mother. She was a beautiful soul and a kind, generous, thoughtful person. She taught me a lot, in life and in death. I hope she taught you a thing or two as well. 

-Sean Kelly

Vicki Kelly 1966-2017

Hey all,

Vicki’s son, Sean, here. For anyone who’s followed this blog and might be unaware, my beautiful mother passed away in July after living with Leiomyosarcoma for almost a decade.

Mom fought really, really hard, as evidenced by this incredibly moving and powerful blog. The magnitude of her loss is indescribable, but not just on a personal level. She also inspired so many people to be an advocate for themselves and to fight for their life.

She fought until she knew in her heart that her time had come. She blazed trails and may have even broke some medical ground. She was a hero. But so many others fighting this disease were and are as well.

I would urge you to visit the Leiomyosarcoma Direct Research Foundation for more information on LMS and on how you can help/contribute to funding research into this rare disease. We will, of course, keep this blog up so that this portion of her story can on live in her own words.

On behalf of my family, I’d like to thank you from the bottom of my heart for following mom’s journey for these past several years. Your support and encouragement meant the world to her. It’s been almost five months since she left us, and we’re still trying to pick up the pieces. But you’ve all made it so much easier with the tremendous outpouring of love and support shown to us in the days and weeks following her passing.

Make no mistake, losing my mother has forever thrown our family off balance. She was the center of it all; the force that kept us moving every day even when she could barely keep moving herself. But of course, we will continue on and try our best to honor her every day by doing our part to make the world a better, healthier and more aware place, just as she did for so long.

-Sean Kelly

Ch Ch Ch Ch Changes…

It’s been a while since I’ve written. I’ve thought about doing so many times these last few months, but I have been busy living life. Since my last post, the theme of life around here has been change. Life altering, “OMG I can’t believe I’m still here to experience all of this, woah, I didn’t expect to feel all the feels regarding it,” change.

For example, in just one weekend one of my sons got engaged to the most beautiful girl imaginable. My youngest, the only one still living at home and whom I shared precious one on one time with for the first time in our lives, moved to Savannah, and my other older son moved from Savannah to Atlanta. My two oldest have been living in Savannah  (less than two hours away) for almost two years and now one of them is more than 5 hours away.

What I didn’t expect was how deeply this would all affect me. I raised my sons to become independent, self sufficient adults, and they have accomplished exactly that. In fact, they work so hard on so many ventures that they exhaust me! I couldn’t be prouder of all they have accomplished thus far and all that they reach for in the future. However, the realization that life will never be the same, that I have 5 extra bedrooms in my house that will never hold their stuff ( AKA messes) again sent me into a two week sadness that took my breath away. You hear about this happening, but never really expect it. Expect it.

Navigating the upcoming wedding plans as mother of the groom has also been an emotional roller coaster. There have already been times when I wanted to take the reigns and give all my input because let’s be honest, it’s no secret I’m a control freak! I’m also good at this stuff! But deep inside, the truth is, I have been keenly aware that I am fortunate to be here to even plan, and wanting to enjoy every minute of it.

My son and I had a moment of reckoning regarding the wedding. I gave input and in my “no nonsense, ask me and I will tell you exactly what I am thinking” way, gave it to him straight. This caused some friction, and during some very difficult conversations, my son and I came to an understanding and saw it through each others eyes. Except, I was afraid to tell him the real reason I wanted so badly to be included in decisions and why it was so important that I felt like my suggestions were considered…. I couldn’t tell him that deep down I was terrified that this part, the planning, might well be the only part I would be here for.

Finally, after much back and forth and many tears, I did express that. He stopped dead in his tracks and much like I expected, had not thought of that. See, just like most people in my life, he forgot that I was still sick. He forgot that this immunotherapy is not a cure, and that we are on fragile ground because we have have no idea what tomorrow will bring.

I have tried so hard to make this all look easy. Actually, most of the times I didn’t have to try hard, because it felt easy.  There have even been times during the last 7 months of amazing response to this drug that I forgot that it could take a different turn at any moment. I have had to make a very conscious decision to remember, because I have been afraid to allow everyone around me to dare to hope that this would be a road to forever. My life has been a delicate balance of trying to live normally and peacefully while never, ever letting down my guard. I have at times been frustrated that those I love seem to have moved on from remembering that I still, in fact, could relapse, yet I have been the leader in moving forward. It was ok for everyone to treat me normally again, and yet it frustrated me because I have been afraid of what would happen to them if something went wrong.

Well, that time has come.

I need to get it out now, because my journey has been about the good and the bad. So much good… through it all, there’s been so much good.

Until now.

I had scans yesterday as I have after every 3 doses ( so every 9 weeks) of the Keytruda. And it was not good news.

I have three new tumors. Three. New. Tumors. I can’t even write that without tears. New tumors. Shit.

The huge tumor that has been miraculously shrinking, for the first time, was unchanged. If that was all, then ok. Stability. I could live with that.

But that was not all.

Yesterday, Pat said “I wish you weren’t always right about your body.” See, I knew something was up. A few days ago I started to feel something in my gut. This is nothing new, as anytime I’ve gotten bad news I always had that sense.

The night before scans, I was obsessing. “honey, do me a favor, measure my back. I’m telling you I think it feels the same.” He measured with his hand, then we put a ruler in the space between his fingers. Sure enough, in our very amateurish estimation, it was the same. We rationalized… it’s hard for us to measure like this…. the intra-thoracic portion is probably gone now and this part needs to catch up… we’re just being ridiculous. Pat to me: “well how do you feel? You feel ok right?” Well, not really, come to think of it I have been feeling a little more fatigued than I had been. But hey, my iron levels are all over the place, maybe I need another iron infusion, and plus it is time for another B12 shot, right?

Deep inside I had a feeling. So night before last as I tried to go to sleep, I kept feeling around my back, and sure enough, I felt something. A new something. And I knew. Yet I hoped, I prayed to GOD to please let me be crazy. Please GOD no, not now, please.

I begged. And begged.

And yesterday after scans, I knew.

So when my doctors came in to talk to me, I wasn’t surprised. It sucked that I wasn’t surprised. It really, really sucked because why can’t I just be wrong this ONE time??? Why can’t this be a bad dream I’m having? Why can’t I just wake up from this moment and I will be back to the miracle I have been experiencing?

I looked at the scans with my doctor. No doubt, there they were, the new tumors. I hated them more than I have ever hated any of the many tumors that have taken up residency in my body. I hated all they represented. Everything that meant this time in my life, the time that I get to pave the way, give hope to many, be the exception to the rule. The time that I get to believe that I can give my sons my full attention, that I can ease into being an empty nester, travel effortlessly with Pat because we can, enjoy my mother in a new way because she just moved here to be near me. I hate these new tumors because now I have to go back to being a full time patient. Just when I dared to start considering ways to use my new lease on life in a new venture, patient advocacy, and what that looked like in my future.

My future.

Tomorrow. This news has stripped me of daring to see past tomorrow. The word future takes on a meaning I dared to hope was behind me. I’m pissed. I would be lying if I didn’t say that. I. Am. Pissed.

I rarely ask “why me?” But this blog is about truth, and this news is still brand new, and it’s raw. So I am trying to avoid asking myself that question. But I am asking it. Not because I feel sorry for myself, I’ve been over that for many years. I’m pissed and asking “why me?” because of all the people I feel I have let down. My family. My doctors. My friends. All of the people who have been on this journey with me, who read my blog, who have prayed for me, cheered me on. I feel like I’ve let you all down.

I am pained about what this news will do for my fellow Leiomyosarcoma friends. So many of them are seeking out immunotherapy treatment because of the success I have had. I have freely and happily shared my journey with them, and it has created a hope in our group and our LMS world that we haven’t seen in quite some time.  I hope they will continue to have that hope! Many have written to me, had their doctors contact mine, started immunotherapy treatment or are about to. How will this affect them, I wonder? Will they be able to see that all the moths I’ve had of my monstrous, gigantic tumor shrinking should still be considered a breakthrough? Will they ever know how much joy I have experienced because of being brought back from the brink of death, and that every single second of that should still be celebrated as a triumph?? Will they be able to understand that the reprieve Keytruda gave me and the amount of time it has given me is way more than most chemotherapies used for our cancer usually give us with far less adverse side effects? I hope they can remember this. My success thus far has been nothing short of miraculous, and I still believe it is a game changer for some of us.

So, what’s next? Good question. My team and I are trying to figure that out. I am 100% not ready to give up on Keytruda. I feel that maybe radiating one of the new tumors to shake things up, create a new “synergy” with my immune system would be my first choice. My radiation oncologist is going to be looking at past radiation and the new tumors to see if there is something we can safely radiate. This is the route I would like to try. My gut is usually right, and this is what my gut is telling me to do. I hope it’s feasible. But this is all new, even to the doctors, and we just don’t know.

There are also “match” trials we can look at. These are targeted therapies based on a tumors exact biology.

There is also the possibility of adding another immunotherapy drug with the one I am already taking.

My doctors have made it known that they are not giving up. And neither am I. Not until my last breath. I have been doing this for a long time, and I’m still here. And I can’t quit now.

I have a wedding to attend in early 2018, and I so want to give my son the gift of his mother being beside him. I have traveling to do, sons successes to watch as they lead their lives, a husband to enjoy in this next phase of life, a mother to take care of as I promised my father I would as he took his last breaths just 5 short months ago. I’m not done in this world, not done teaching patients how to advocate for themselves, or helping people understand how important it is to stay fit and eat healthy. I’m not done shopping, having lunch with friends, being the matron of honor in my BFF’s wedding. I’m not done.

Please GOD, I’m not done. Not yet.

Change is so hard. But so good. I have to, no, I must hold on to the good. I MUST remember the good I’ve had in this reprieve I’ve been granted. And I do, and I am beyond grateful.

But I must be selfish… not in thinking of only myself but in insisting that I have the opportunity to fight with all I have and everything available. I must look to the potential changes ahead, all the possible goods to come, and I have to reach for them, grab on, hold on tight. I have to be willing to try my hardest to see past tomorrow. And keep going.

I will keep going. And no matter what, I will win. For all of us, I win.

 

 

 

 

 

Still Here?

Yes. Yes I am. I am still here.

I’m sure people must be asking “isn’t she supposed to be dead by now?” 

In my previous posts, I didn’t want to disclose my timeline, but I will now because I clearly have surpassed it. My “expiration date” was supposed to be somewhere around the end of March, beginning of April at most.

We had prepared. As a family, we weren’t ready, no one is ever really ready, but we had prepared the best we could and I felt peace in what was to come. Each of my sons and I recorded ourselves dancing to a song of their choice to be shown at their weddings, because I wouldn’t be there to do a mother son dance on their big days. I dug out my sons favorite childhood books and recorded myself reading them for my future grandchildren. Pat and I had discussed at length my wishes for services, what I wanted for him and for the boys in the future. We had discussed what life would be like for them without me. We cried many, many tears. We also laughed as we always do and found joy in each thing that presented itself. We made memories.

The unthinkable was getting very close, I felt it in my body and knew it to be true.

Yet, here I am.

I have put off writing this blog for many reasons. I mean, if I put it in writing, am I rocking the boat? What if I write about what is happening and then things start to go to hell again? What if I put it out there and poof, I realize it’s just a dream? What if people roll their eyes and think “Enough already! Either die or don’t die but stop driving us crazy!” Far be it for me to want to be the cause of angst or anxiety.

So many worries about telling my story. But it’s time.

I’m still here…. and here’s why…..

Back in December, I had been hospitalized for severe hemoptysis ( coughing up blood) and aside from palliative care, my doctors and I had discussed the fact that I was out of options. There were no more chemotherapy drugs that I could try safely and surgery was definitely no longer an option. The cancer had invaded my entire left side, was squeezing my heart, my spleen, arteries, my (1/2) lung. It was protruding out of my back and was causing me tremendous pain. I was on a path towards the end of my life and everyone knew it.

It was right around that time  I had asked about the immunotherapy drugs Keytruda or Opdivo. I had heard about them through many channels… Opdivo because a dear friend of mine who has lung cancer and was on hospice was given the chance try it and had a miraculous result! She went from dying to thriving within months and I saw it happen before my eyes. I had also seen on the news that Jimmy Carter had an incredible result from taking Keytruda, and something inside of me thought that I should have a chance to try one of them as well. These drugs had recently been approved after many trials for Non Small Cell Lung Cancer and Melanoma. I did my homework, and there was one trial ongoing in Boston for my particular disease using Opdivo. The problem was that the trial was no longer accepting new participants.

Pat sent out an email asking friends and family to please write letters asking the trial coordinators to allow me to get in. It was a long shot, and we had no idea how we would make it work logistically, but we needed to believe that maybe they would give me a chance considering the dire shape I was in. Unfortunately, within days of that letter writing campaign, we found out the trial had closed early due to “poor success”. This was extremely disappointing, to say the least. Downright deflating.

While discussing this situation with a good friend of mine in California who is a 15 year survivor of LMS, she said, what about Keytruda?  After much discussion we decided to call the drug company that makes Keytruda, Merck, who said that if my doctor called and explained my case I would probably get the drug. What?? It sounded too good to be true but they were pretty matter of fact about it. Keytruda works much like Opdivo, so the chance of it doing anything were slim to none, but what did I have to lose at this point?

I brought this up to my oncologist ( Dr. P.). She raised some of the obstacles that could stand in our way, such as trying to get approval through the people in charge at the cancer center, for one. Also were all the risks, all the unknowns, all of the reasons it could be detrimental rather than helpful. I think it was also hard for her to believe that it could be as easy as I relayed to get hold of for a patient with a rare disease that has had no trials for Keytruda at that point.

The holidays passed with me spending them in the hospital over an 8 day stay with two procedures to embolize arteries to try and stop internal bleeding. At my next visit with Dr. P. after the New Year, I broached the subject of Keytruda again. Dr. P. assured me she would discuss it with her colleagues and let me know if there was a way. She did express to Pat and I that they may not approve my trying the drug because it wouldn’t be on a trial basis and it could cause me harm. Well, I was dying…. this we knew… how much more harm could it cause? I assured her that Pat and I would sign any papers necessary to ensure that we would hold no one responsible should Keytruda cause me any harm, including cause my death. We are so very appreciative of the extraordinary care I receive and we would  never want any responsibility to fall on my doctors or the institution where I am treated and where Pat is employed. Never.

In the meantime, as I was finishing up a 5 day intense round of radiation to try and stop continued internal bleeding causing me to continue to cough up a lot of blood, Dr. P. sent me an email.The subject line read: “WOW!!!!!!!!!!” I had been approved for Keytruda by the drug company, and from the financial office. I was approved!!! Yipppeeee!!!

Further, Dr. P. explained that I would have the drug in two days, and that we should start it immediately because there is mounting evidence that taking Keytruda in conjunction with radiation can cause a process of synergy, increasing even the smallest chance of the drug being successful.

There was a part of me that had absolutely no expectation of Keytruda working for me. The first day of my Keytruda infusions, Dr. P. said to me: “Vicki, I have no medical reason to give you this drug.” I knew she was right. I signed the papers I promised to sign, and I insisted on writing in ink on the consent form “in the event of death” as to holding no one responsible from the medical institution. I told Dr. P. that she meant the world to me and that if ever anyone gave her grief in the event something bad happened to me, I would come back from the dead and cause holy hell. I think she knew I was serious.

Keytruda is given as an infusion, much like chemo. I was to do an infusion every three weeks, and we had agreed to go for at least 4 treatments, as it is known that these immunotherapy drugs can take a while to work as opposed to most chemotherapy drugs.

Meanwhile, my cancer had grown out of control. In 6 weeks it had more than doubled in size. I was getting sicker by the day, breathing was getting difficult and nothing was working to stop the internal bleeding and the coughing up blood.

Dr. P. planned to do CT scans after two treatments to check on progress. It was pretty obvious based on the tumor not only crushing my insides and causing a good deal of symptoms but by how quickly and vastly it had continued to grow and stick out of my back. It was getting hard to function at this point, and as I had written in my previous two blogs, when you are near death, you know it. I was very near death.

Sure enough, the scans showed over 50% growth of disease. I could see in Dr. P.’s face that it was going to be hard for her to justify keeping me on it. We talked openly and honestly, and I reminded her that despite the growth the Keytruda itself was not causing me harm, only a few rashes and so why not just continue? I have to say, if I were her I would have been so torn as a doctor and yet also a person who has known me for almost 6 years. We had shared so many ups and downs through my care, and so many laughs and tears as two women. I knew her before she even had her two gorgeous little girls and she saw me stop and start my life and cheered me on the whole way. I KNOW she didn’t want me to die…. but I also know she didn’t want to kill me. She relayed that had I been on a trial, I would not be able to stay on it due to that amount of growth. But we stayed the course! And we decided to keep that glimmer of hope together.

In the next several weeks my health continued to decline. I had received the third infusion, and the tumor kept growing. Of course, because this is me, I was upset as I was hardly eating yet the scale went up a little bit every time I went in for a doctor visit. I complained about this to Dr. P., who  explained that my tumor likely weighed at least 10 pounds, if not more. Oh. Justification! My only response was that at least it wasn’t my ass getting bigger. Hey a girl’s gotta have priorities even when she’s dying!

Meanwhile, the end was definitely near. I had started to need blood transfusions… I was basically a hot mess…. express…. ( see what I did there?)

On the day that was to be my fourth Keytruda infusion, Brendan was driving me to the hospital and I started coughing up so much blood we had to pull over at a gas station where  he ran inside to get me napkins to cough into because the tissues I had with me were used up within a few coughs. I started having a lot of trouble breathing, and by the time we arrived, 15 minutes from my home, I was being put on oxygen and then I was admitted for the third time to the hospital. This put off my fourth dose of Keytruda, and I was petrified that I wouldn’t have the chance to get it. Dr. P. assured me that I could still get it the following week once I was stable, but my fear was that I might not make it to next week…

When I came home from the hospital the next day, I was to be put on oxygen for whenever I needed it and the next thing I knew a huge, alien looking machine arrived at my door. It was hard to believe that just a few months before I was teaching hardcore group fitness classes and now I was relying on an oxygen machine to help me breathe. It was a sad moment for me, I must admit.

The following week, I once again arrived at the hospital to get the Keytruda infusion. As per my labs, I also needed another blood transfusion. I worried that maybe I would once again have to put off Keytruda because as I sat there getting the blood infused into my veins, I was just as quickly coughing it up into tissues. A couple of hours into the blood transfusion, I still had not received the Keytruda, and my nurse couldn’t tell me if I was definitely getting it or not. It was stressful to say the least.

Finally, Dr. P. came into the infusion suite. She sat next to me, and she told me what I knew in my heart she would…. she said she just didn’t feel good about giving me the Keytruda. She told me that with all of my symptoms, if I was on a trial I wouldn’t get the drug. In between coughing, I stated my case. I told her that this would be the fourth dose, and that if in 3 weeks when we scanned again it showed growth, then I would transition to hospice. I told her that I needed to tell my sons that I did everything in my power to stay here with them. And with that, she hugged me, told me she understood and that we would go ahead.

Fast forward almost three weeks, a few days before scan day. Without realizing it, I started to feel a tiny bit of energy. I hadn’t coughed up bright red blood in a couple of days, just older darker looking stuff. Pat kept looking at my back and saying ” I swear it looks a little smaller to me.” I told him he had to stop saying that because it was possible that it was “morphing” inside of me and shifting and the part sticking out of me wasn’t indicative of all that was actually happening. I tried to tell him it was wishful thinking on his part and that he was being unrealistic. Deep down inside, however, I kept looking in the mirror, and I thought it may have looked a little smaller too. It was scary to think so…. I put it out of my head. And then I suggested to Pat that we go for another bike ride despite the bike ride disaster just a month or so before. This time I didn’t fall…

Scan day came, and I was at complete peace. It was the first time in 6 and a half  years of doing scans a minimum of every three months that I did not have “scanxiety.” I was at complete peace, and had absolutely no expectations.

An hour after scans I was in the exam room waiting for my radiation doctor to come in and give me the probable bad news. Poor Dr. C. had only delivered bad news to me for a couple of years now, and I felt bad knowing he was going to have to be the one to give me this last bout. When he opened the door, following behind him, waving her arms around in some kind of dance move, was his nurse and my dear friend K. K looked way too happy for someone who was about to tell me it was time for hospice.

Dr. C. said: ” Well, I have good news. I have never been able to give you good news before! Your tumor has significantly shrunk. It has shrunk by at least 50%.” Pat and I literally sat there, looked at each other and then at him and said, “what?” Dr. C. repeated himself and then we repeated over and over, “what? what?” I don’t think we were processing what he was saying.

Together, we all looked at the scans on the computer, compared the current scans to the previous and it was truly unbelievable!! There was no denying it! The Keytruda was working!! This was a miracle of amazing proportions and it was happening to me! No one, not even me, really expected it to work. Especially after so much growth.

There was so much happiness in that room,  it was crazy and wonderful! We went from planning for hospice to embracing life within minutes! My mind was racing. What did this mean?? How would I tell my boys? My  parents? My friends? How long would it last? What would be next? Could I plan for the future?

So, next I go see Dr. P., who had already seen my scans and spoken to Dr. C. As Pat and I waited in her office, suddenly, Dr. P., Dr. C., Dr. B., all their nurses, the nurses from infusion, a couple of CNA’s, they all came piling into the room. As if my head  wasn’t already spinning, I couldn’t understand why they were all there. Then I thought that they must have all heard my good news and they were here to celebrate. And then, N., my friend and neighbor who happens to be the charge nurse in the infusion center presents me with a two night stay at the Sanctuary, the most luxurious, beautiful hotel, the only one on Kiawah Island, my beach of choice and favorite place on earth!! I couldn’t believe this! They did this just because!! Pat likes to say it was a “going away” gift turned celebration! There were so many tears of joy in that room, hugs galore, and an abundance of love. What a community of people, what a beautiful family we are, how blessed I am to have each of them in my life.

Once everyone started to filter out of the room, Dr. P. sat down next to me. Still with tears in her eyes, she said something to me which will stick with me the rest of my life. She leaned in, and she said these words: “Vicki, you believed in this drug before any of us did, you pushed to stay on it, and THIS is why patients must advocate for themselves.” Profound words. My respect for her is immense, and her words are such an example of why.

So, this is pretty big news. Here I am. Still. There is much more to tell. There will be a lot to learn from my case, and as we speak Dr. P. is documenting, doing research and carefully examining the facts that could have contributed to my success. We have discussed several factors, agree on several, and she will be documenting her findings and my case. These things take time, especially if they are done responsibly and with care. In order to respect her and the scientific process, I have waited until now to explain what’s been going on. I have shared my story with my private LMS group and there is much chatter and excitement. Others have been speaking with their doctors about getting the drug, and Dr. P. has been gracious enough to offer information to their doctors upon request. I am so proud to be her patient….she is the epitome of intelligence, professionalism, relatability, caring and most of all grace. She took a chance to save my life, and as a result she may save many. She, and my entire team, are the best of the best. I am so, so  fortunate to have them.

As for my cancer? It is literally melting away. I have since had more scans after another three doses, and they show another over 50% decrease in size! This time it was not a big surprise because we can visibly see the tumor disappearing! No more coughing up blood. No more oxygen ( I made them take it away just last week! Be gone oxygen machine!). No more extreme pain. Clothes fit me again. I’m driving again. I am not only riding my bike, I am exercising intensely. And by intensely, I mean, I actually started subbing a couple of classes at the gym last week! Yes, you read that right. I subbed at the gym. And I may or may not have jumped higher during those plyometrics than some of my students ;). I’m kickboxing, hitting the heavy bag, strength training, doing high intensity intervals, tabatas. I’m kicking butt with all I can while I can! To be able to exercise again… what a gift!!

Everyone has asked how long I stay on Keytruda and what happens now. Here’s the answer as far as I know: we  don’t know. This is practically unprecedented for LMS. It is not a cure, and anything can happen. It could start to attack healthy organs. It could stop working and my cancer can grow again. Or it can keep shrinking my cancer until it’s undetectable, a scenario which I choose to focus my energies on. As to how long I continue on Keytruda…  I stay on  indefinitely, or until circumstances dictate otherwise. That is all I know, that is all anyone knows. I’ll take it.

Two days ago I received my 9th infusion of what I now call my “magic juice.” Then I came home and rode my bike with Pat. Pure magic, indeed.

Recently, my family and friends threw me a surprise 50th birthday party of epic proportions. I wasn’t expected to turn 50, yet there we were dancing the night away and celebrating life! I’ve never, ever felt so much love in one place at one time in all my days. 

In three days, Pat and I leave for a much anticipated vacation to our favorite all inclusive resort. We will float in the lazy river, lay on the beach and savor every moment we have together in paradise. I can’t believe we get to go…. I guess when I say anything is possible…..anything really IS possible…

There is much more to tell. And I will, soon. But for now, this is the story of how I was supposed to die, but didn’t.

Or maybe, just maybe,  I was supposed to live.

xoxo

 

 

 

Still here

That’s right. I am, in fact, still here.

I am, in fact, still me.

Some things have changed. They have. Things that are out of my control. If you know me, you will understand how much being out of control really pisses me off. For instance, I am no longer driving. My beautiful dream car, (given to me by Pat two years ago after coming through a year of not only several cancer surgeries, but also surgery for a badly herniated disk in my neck and emergency surgery following that one for a perforated duodenum  and peritonitis), sits in my garage calling to me. I guess it was my prize for almost dying. We actually like to jokingly call it my “Make a Wish Foundation” car. I will choose a Mercedes convertible SLK250 white with red leather interior over a trip to Disney any day. Sometimes I just open the door into the garage and stare at it. I play the game in my head…. maybe I would be ok to drive it…. just a little bit.  But my weakness, the protrusion on my back, the inability to stretch my arm, the pain and the fact that if I start coughing up blood could cause harm to others on the road, stops me. So, I wait for the weekend and put a pillow behind me in the passenger seat and ask Pat to just drive anywhere so that I can be in it. We even got to put the top down last week on a ride to the beach.

Another thing that is out of my control is not being able to be as active as I was. Being a personal trainer and group fitness instructor means that every day that I don’t get to teach or train because my body won’t allow it feels like a piece of my heart shriveling up and dying. I have been in and out of the hospital several times now for coughing up blood. I have  had to use an oxygen machine when I get short of breath, which isn’t often but it happens. But, I am stubborn. In between I find myself pouncing on poor Pat as soon as he walks in the door after work wanting to go for a walk. He is always more than happy to comply, and never complains that power walking/running isn’t an option anymore. We always hold hands during our walks, and every once in a while when I start to walk lopsided or walk off the curb he pulls on my hand, much like pulling a dogs leash when they wander to get them back in line. I am secretly grateful that he pulls me back, even when I remind him that I am actually human.

It pains me so much that our nightly bike rides haven’t happened since December. We never spoke about it, they just stopped happening. From the time I started chemo, did radiation, had two pulmonary artery embolizations and have needed blood transfusions it was clear that riding a bike, much like driving my car, was no longer safe. So, a couple of weeks ago, a few days after coming out of the hospital, I was sitting on my couch on a gorgeous day, wishing I had the energy to get outside and do something… anything. I knew I needed another blood transfusion. I could feel it. Pat suggested a walk, but it just didn’t sound good and I felt awful. Then I went on facebook and my newsfeed was chock full of people’s pictures displaying fun, outdoor activities. Beach outings, Second Sunday on King ( a cool thing our city does on the second Sunday of every month), oyster roasts, etc. Then, there was a picture of a friend of mine and her husband riding their bikes. Suddenly I jumped off the couch, called for Pat and told him I was getting on my bike. He looked very concerned, told me he didn’t think it was a good idea, especially because I needed a blood transfusion and had just told him I was dizzy and weak. I  ignored him and said, I need to get on my bike so please go and put air in my tires and lets do this.  Oh my sweet, sweet husband. His patience with me should truly earn him a medal. With that, I got on my sneakers, put on workout pants and out I went. It felt so good despite the fact that I was definitely not on my game. In fact, I was kind of shaky. However despite this, we went around the block which was what Pat had set as the guideline…. if I did well with that then we would go just a little further. Once we had ridden the first phase of the neighborhood, I said, let’s go to phase 2! Well suddenly, without realizing it, I had ridden off the street onto the grass covered in leaves and branches, tried to ride back onto the street and fell, bike on top of me. I was face down, sunglasses pushing against my cheek and arm hurt, and just laid on the ground and cried. I wasn’t crying because I was physically hurt, though I was. I lay there crying because for the first time I had this gutteral response to the situation with these words repeating over and over in my head: it’s not fair!  IT’S NOT FAIR!! Sobbing…shaking….sad and mad. It’s not fair. Pat hesitated to help me up for a moment because he knew why I was crying. Without words he knew and he also knew that I needed that moment to just cry. When I finally did get on my feet, I showed Pat where my arm and wrist were hurting and dusted myself off. He suggested that we walk the bikes back to the house, at which I said an adamant NO. I told him we were going to ride through all of phase two before we headed home. With my arm barely able to straighten out and tons of pain all over, we did exactly that. Smart? Probably not, but for just a few more minutes I needed to feel like life was fair enough to let me feel just a little bit normal. I knew once we got home the chances of me riding that bike again was not good. It’s been a little over  a week and my  arm is badly bruised and my wrist is still killing me.

There are other things that have changed. Lots of things, such as looking in the mirror and seeing skin that has lost it’s glow, eyes that are pale and tired and have circles underneath that get harder to hide every day. Because the giant tumor is protruding out of my back, I can longer wear all of the clothes in my closet that I love so much. Now I have to find clothes that allow enough room for this growth as well as camouflage it as much as possible. I can no longer plan anything without fear of having to cancel, nor can I do more than one thing in a day. I usually have about 1-3 hours that I can be out and about without severe pain and fatigue, and so I plan with that in mind.

There are so many other things that have changed. I am sure every person who has terminal cancer has their own list. I am sure we would all have as many common things listed as those that are unique to only us.

About a week ago it suddenly occurred to me that the timeline that my doctor gave me  (That I pushed him for. I just want that to be clear as I don’t think he would have chosen to give us one. We were grateful that he did.  ) is almost up. When he gave me the timeline, Pat and I had been thinking of the exact timeline ourselves, so when he said it, we felt it was accurate. I still feel that for anyone else in my situation in fact it could be. So I started asking myself, my family, my doctors… why is it that I am still here? Why am I still doing well, despite how sick I am? Why can I still go out and enjoy family and friends, take walks, go to lunch and dinner, see comedy shows, go to the movies, see a play? Why can I go to a show my sons band is playing and get up and dance? Why why why?  Is this how everyone handles the end of their life or am I different? If yes, why am I different?

The answers I have gotten reflect an element of the mindset that made me fall off that bike and get back on it, pounce on my husband to go for walks, make plans with friends, get up and get dressed and do one thing every day. It is my refusal to give in. My refusal to lose everything about who I am and what keeps me going. One doctor said point blank that he believes it is because I came into this extremely fit. Wow! So all that stuff about being fit I’ve been preaching to my clients, students and  family isn’t nonsense!  Cancer and all, keeping active can actually extend your life, even when your life is ending. What a concept!

So, now that my timeline is almost up, I am planning to keep going. If I can’t drive my car, I will make sure I embrace that passenger seat with a grateful heart because I am still here to enjoy that privilege. I will take long walks with my husband even if I would rather ride my bike because my legs will still carry me as long as I use them every day. I will enjoy wearing clothes that will enable me to feel as good as I can, because even though I am unable to wear everything in my closet now, I am still able to be in it and choose an outfit to be out in the world, enjoying a lunch with friends, a date night with Pat  or an outing with my sons.  Even if I can only last 1-3 hours. At least there’s that.

I will tell myself daily that although things have changed, they don’t necessarily change me. I am still that person who wants to live big. And even if big has become relative,  big is still as big as I want it to be.

My timeline is almost up. I think I will be able to plow through it, much like a runner at a marathon crossing the finish line. I won’t be finished though. I will continue running, wind in my hair, sun on my face, until I can no longer see that finish line behind me.

I am still here.

And I am still me.

 

Still me.

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.

Go Team!

Sitting here feeling so fortunate to have the team of doctors/nurses that I do.

   I just got an email from my internist who has been keeping up with my situation via notes from my other doctors. She said she was just checking in because she saw a note from one of my other doctors I saw yesterday and it said that I have been having a hard time with treatment amongst other complications, and wanted to see how I was doing. She easily could have read that and moved on without taking the time to basically just say she was thinking of me. Some may not see how comforting that can be, but that act of caring is not lost on me.  In fact, they happen often, and I am so thankful.

   I have doctors who write to me late at night, respond to emails immediately, call me at 6:00 to discuss concerns and never rush me off the phone. They write to me on a Sunday evening to see how I’m feeling, get choked up when they have to tell me really bad news and call on the rest of the team to make plans to get me the help I need quickly. The write me back at 10:00-11:00 at night when they could be decompressing or (gasp) sleeping. They respect me as part of my own team, instead of a helpless patient. Not to mention the top notch medical care that they provide…. yes, there’s THAT.

   I have nurses who know me by name, some who have become real life friends and are quick to help me in any way they can and go out of their way, even at night or on weekends to answer questions and help me. They never make me feel like I am bothering them, even though every time I have to bother them I feel guilty (Jewish guilt still follows me, even in this cancer fight. Yet another affliction I suffer.)

   When you are sick, as I am, you can feel helpless and at the mercy of the people charged to help you. It’s so important to know that the team surrounding you actually cares about your well being, and want the best for you. I have a respect for them, and the best part is I feel they respect me back. This is a relationship that makes going through the fight for your life just a little bit easier because you don’t feel so alone. All of them, and I mean all, make me feel like I am their only patient, and that I matter. I don’t know how they manage to do that since judging from the waiting rooms I know they have lots and lots of other patients.

   In turn, I do what I can to show my appreciation… I never complain when I have to wait, sometimes a very long time, to be seen. I always think of the other patients before me, and I take comfort that I am waiting because they are getting the attention they need. They deserve that just as I do. Sometimes I think maybe my doctors are actually eating lunch, or taking a bathroom break for goodness sake! I am willing to wait as long as I need to, they have earned at least that from me.

   I felt compelled to write an entry about this because it is rare to have an entire team in your corner the way I do, and I wish everyone who is in this fight could have the same. I would name some of them here, but they are always so humble and modest when I gush, which speaks volumes about their character. I told one of my docs recently that Pat and I think he is awesome…. this after a tough conversation ( in the evening when he could have been home with his family having dinner but he made sure to call me first) about a not so good development…. he said “I don’t feel like I ever do anything”. Just calling me before days end so I didn’t lose sleep because he knows by now I will fret until I have answers, just showing compassion and and answering my redundant questions, well, that’s EVERYTHING. I tried to tell him so, but I may have stumbled in my explanation because there really aren’t words for what those little things can mean to someone in the fight for their lives. Our lives can unravel because of this stupid disease, so anything that keeps us feeling safe and protected, like knowing the people charged with taking care of us understand our needs, like the need for information so some of us ( okay, me) can feel in control, is much appreciated.

   So, in a day and age when it’s easy to see the bad in people, when people forget to say thank you, I am feeling grateful, and humbled that no matter what happens, I have the team that I do. I sometimes feel sad because I know others in my cancer circles ( gosh isn’t it awful that is a thing?) aren’t as fortunate, and that stinks. My prayer for today is that everyone fighting this fight, or any illness they are fighting for that matter, that they can be equally as fortunate. It takes work, it involves weeding out those that are not a good fit, deciding what it is that you are looking for, and cultivating those doctor/patient relationships. It means having compassion for them just as you would like for yourself, and understanding that they are not just doctors/nurses. They are people who chose this profession, sometimes a thankless one, because they wanted to do good and they are willing to work hard for it. Some of them, like my team, go above and beyond, and that deserves acknowledgement, even when they can’t fix things. They are human.

   To all those humans who are part of my team, I say it all the time and I won’t stop saying it. Thank you. When you are working late and miss dinner, when you don’t see your children because you are having a grueling week, when you are on call and us patients drive you crazy, when you have to leave family parties, take a call in the middle of a good movie, don’t sleep because your mind just won’t quiet down after the stress of dealing with very sick people all day…. THANK YOU.

   No matter what the outcome for me, no matter how sick I get, how much I want to fight or sometimes want to quit, no matter how sad I get or how much I celebrate…. thank you.

   Our journey can be difficult enough. Mine is definitely a doozy… but as I always say, gratitude in abundance is good medicine. I wish it could be the cure….

16 months later…. LMS sucks….

Recently a friend asked me when my next scans were going to be. Right around month 2 I get asked that question a lot. I have to admit, it always touches my heart that the people in my life keep track of my 3 month scans. It’s such a testament of their love and concern and never overlooked. Anyway, when I answered her that they would be the 3rd week in October, I also told her what I had been feeling. I told her that I was slightly more worried than I had been in a long time because I felt that I was living on borrowed time. This feeling had started to creep in, and I couldn’t shake it. Since the nightmare that had been 2013-2014 was far behind me, I knew how great I had been feeling and how well things were going, yet there was this nagging voice that kept telling me that my cancer had been quiet for almost as long as the longest period of time I have gone cancer free in the last 6 years.

Last Wednesday I woke up with a terrible pain on my side. It was a nagging, aching pain that was new. Being a crazy fitness instructor/fitness loving workout junkie, I often get muscle soreness, but this definitely felt different. I had also started to become slightly short of breath, nothing too serious but enough to make me question it, as well as a bit more fatigued than normal. I played the game in my head I always play… maybe it’s time for an iron infusion, maybe I’m not sleeping enough, maybe, maybe, maybe.

I was trying to see  exactly where the pain was coming from the other day, and while doing that, I felt a lump. I knew instantly it was new. It also occurred to me that maybe the lump was sitting on a nerve. I got in touch with the nurse from my radiation doctor’s office ( and also someone who I happen to consider my friend xo) and she immediately moved my scans up. Well that happened yesterday and today I got the news.

My cancer is back. I kind of knew it was. I did, and I hate that I’m always right about this stuff, but unfortunately I am in tune with my body and my instincts are usually correct. This time, however, I wasn’t expecting all of the news.

I was expecting to hear that yes, the lump is cancer. Yes, it’s sitting on a nerve. I expected to hear, let’s remove it with clear margins, relieve you of that horrible pain you are having and get on with this fantastic life I’m having. Yea….. not so much….

I have a 10+ cm,  apparently very fast growing monster tumor growing inside of my diaphragm. I saw the scans, indeed it is a monster. The lump on my back is kind of connected to the rest of the monster, but it kind of poked through a part of the ribs where the last surgery left a sort of opening. The monster is pressing on my diaphragm and spleen right now and seems to want to spread elsewhere according to the scan report.

This is the biggest tumor I have ever dealt with. It seems to be really aggressive like the last one that wouldn’t respond to chemo or radiation and almost killed me. Needless to say, we are all shocked and horrified and scared and every emotion possible.

Surgery, not possible. The last surgery left me with so much residual pain, 3 less ribs and if surgery was even attempted `it would mean removing more ribs, resecting my diaphragm and so much more. It would be much, much more of a difficult recovery than last time, which was a nightmare. I would be left in a state of not being fully functional, and my surgeon just doesn’t think there is a way to get this all and give me any kind of quality of life. He is the best and has saved me many times, and I know if he thought it was in my best interest, he would do whatever he had to in order to give me my life back. Again. ( Thank you Dr. D., you are one of my heroes, and I owe you the last amazing 16 months of my life).

So, what’s next? First of all, I am in severe pain. Oddly, the only time I don’t feel it is when I am exercising ( how many times do I have to yell from the rooftops that the best pain reliever is a good ‘ole blast of endorphins?!) My mast cell disease prevents me from taking much in the way of pain relievers, and Tylenol isn’t touching this pain. The mast cell disease has actually been pretty active lately, likely because my body is in attack mode from the cancer and the mast cells are releasing histamine in response. I have had several weird rashes lately, even one the other day from putting a heating pad ( over two layers of clothes) on my side where the pain is. I still have blisters and a bright red rash.

Back to pain relief…. one of the  revelations I left with after the news today is the fact that this pain won’t just go away. In fact, it will get worse. I am going to try some nerve pain meds starting tomorrow and talk to my allergist about doubling up on some of my antihistamines, to try and control reactions, but I still fully expect my body to attack a new med. What to do… what to do…

Radiation is also not an option right now. Too big, too aggressive, and my history tells us the radiation doesn’t work on big aggressive tumors that invade my insides. At this point I may need radiation later for some pain relief, but right now we can’t take a chance of even that because it could exclude me from possible trials.

My wonderful doctor ( you’re awesome Dr. C.  and I am so grateful for you) wasted no time making calls on my behalf. By the time I got home my phone was already ringing, and he has started the ball rolling on trying to get information about some immunological trials. I anxiously await the news, as this is my first choice right now. Chemo…. ugh… the thought makes me sick. It hasn’t worked for me in 6 years, and the thought of putting myself through that again just doesn’t appeal to me. Not yet anyway. I would have to see some real hope in it to put myself through that again. I never say never, and I’m not, I’m just saying I would rather pursue anything else.

I am also set to see a sarcoma specialist in Atlanta to get another set of eyes on everything. My doctor has already set that up, and I know she is tops in the field. There are some other things in the works. Fortunately for me I have some wonderful friends who unfortunately walk this path with me, and we all share the latest in sarcoma treatment. I am considering sending my records to another sarcoma doc in California who has kept my dear friend alive for 14 years. Her LMS acts very differently than mine, however there may be trials happening in other parts of the country that could be promising, and I don’t want to limit myself.

Having said all that, here’t the thing: The shit is hitting the fan. This is different, and it’s bad. Tears have been shed today….

I hate doing this to my family. My poor Pat. He is just everything good in my life, and I hate  putting him through this over and over. I just want us to have our evening bike rides and chat about our days. I want us to plan for our beach condo and walk in the sand and ride in the convertible with the top down listening to bad 80’s songs or my boys CD, talking about anything and everything while he holds my hand.

My sons. My sons are doing exciting things. Their hard work is paying off. I so want to be here to see it all. I want so much for them and I want to experience it with them. I’m going to try and do that…. it’s getting harder and harder but I am going to give it my all. But I hate, most of all, giving them this burden. It hurts me more for them than I am scared for me. When I think of what hurts the most, it’s the thought of giving them even one minute more of worry and sadness and fear. They’ve had enough already. Enough.

This Friday night my sons have their CD release party here in Charleston. I have my outfit planned, cute boots shined up and Kate Spade bag ready to go. I am going to sing every word to every song, embarrass the hell out of them  (even though they secretly love every minute of my attempts at embarrassment) and take it all in. I am going to hug all of my friends who come out and tell them I love them over and over till they know it’s true. I want it to be a party, a celebration of everything good in this crazy, fragile thing we call life.

This week, I found out my cancer is back. I found out things are not going to be cut and dry, and that I literally have to try and enjoy every single day I can, pain and all, right now while I still can, as much as possible as long as possible. This week I found out that I’m really glad I had the last 16 months of sheer joy, and that I am going to have to figure out how to get that back once again. I found out that it may, or may not, be possible.

This week I also saw my sons’ band name on the marquee at Madison Square Garden. Life is still so, so good.

Love you friends.

Anything is possible, even without wine.

A year ago I was in pretty bad shape. In fact, a year ago I could hardly breathe. The tumors that invaded my chest cavity were growing out of control. They grew through horrific chemotherapy, through intense radiation and one grew so big that I could hardly breathe. Quickly it was determined that the only choice I had to save my life was a surgery so involved and so huge that my surgeon called it “The mother of all surgeries”.  A year ago I was about to undergo a lifesaving, life changing operation that would change the course of my life.

The recovery from surgery was very intense and so painful. I had a thoracotomy which in and of itself is extremely painful, so much so that I now have what is called “post thoracotomy pain syndrome” which is as awful as it sounds. I had part of 3 ribs removed, a chest wall resection and I am told that now I have less than half a lung on the left side. I am unable to take pain medications due to Mast Cell disease, and I can say that there were times during recovery that I just wanted to give up. The pain was too difficult to take most days, and I couldn’t see that I would ever be my active, vibrant, enthusiastic self again. I couldn’t see a day where I would be able to do what I love, that being a personal trainer and group fitness instructor. During this time I developed Interstitial Cystitis, ( IC),  a very painful and debilitating bladder disease that was enough to take me over the edge and make me regret ever putting myself through the surgery. My bladder had taken many hits through all of my surgeries, and the last two likely had a lot to do with my bladder disease, as well as the fact that I have Mast Cell disease. IC is very common amongst people with Mast Cell disease, and there is no cure. I will now have to live with it the rest of my life and continue to find ways to keep it as calm as possible. Anyway, all  the pain I was dealing with was so horrible  during that time that I truly thought I would be better off dead. There were too many times that I cried to Pat and told him so. Those were some dark days.

However, somehow, someway, one day at a time, I fought my way back. Something inside of me was stronger than the pain, and at any sign of hope, I would grab on, until hope became more prevalent than despair. I had to believe in it, I had to force myself.

A year later, I am training clients, teaching my classes and loving life. Am I still in pain every day? YES. YES YES YES. Some days I wonder if anyone could ever imagine how much pain I deal with on a daily basis. But then, as Pat says, I tend to make it all look easy. I don’t do that on purpose, I just don’t want to be a “Debbie Downer” and I would  rather take any small opportunity to feel the best I can and expand on that as much as possible. That’s what I try and achieve every day. Some days are better than others of course, and on the days that the pain is pretty bad, I do all that I can to make myself feel better, like exercise.

My clients, students, friends, family, they always tell me I’m an inspiration, at which I usually cringe. I don’t think anyone really thought that a year later I would be able to do what I’m doing. Not even me, at least in the beginning. See I don’t think I’m anything special. Honestly, I just think of myself as stubborn. Or as I like to say, a stubborn Italian Jew. I mean, that combination is an automatic blend of stubbornness! Being stubborn means it really pisses me off when I don’t live up to my own expectations. And I expect myself to get off my ass and live well, especially after almost dying. So that’s what I set out to do.

During my recovery, I would recognize every achievement, most of them small, and try and expand on it. For instance, once I could actually make it up and down the stairs, I made a point of finding reasons to do it more and more. Eventually when I felt I could walk a little, I went outside and walked, even if it was to the mailbox. My radiation doctor, after telling him how bad my pain was and showing him how little range of motion I had on my left side and my left arm, referred me for physical therapy. PT was truly baby steps, but slowly I started to be able to use my left arm again. The first time I could actually lift it above my head was a miracle!! I started to believe I would be able to actually exercise again, maybe even use some light weights!! I remember the day I dragged Pat outside for my first bike ride. I got on that bike and woosh, the pain was like knives slicing through my body. I told Pat we would just ride for 5  minutes! I think we did close to twenty and I cried like a baby…. happy tears! I did it! It was the most painful yet amazing moment because I could see now what I have known for so long, if I could just MAKE myself exercise I would FEEL BETTER! The Vicki I thought was lost started to come back. I rode that bike every day, longer and longer each time. I started to do a little cardio kickboxing, careful not to push too hard, yet pushing myself a little more each time. Finally I got back into some strength training, although I started with “baby” weights, much to my dismay. I had lost pretty much all of my muscle tone by then and knew that it would be a process to build it back. It felt so good to be able to work out again.

A few months after that first 20 minute bike ride I was doing High Intensity Interval Training ( HIIT). Wow! It felt so great! I could hardly breathe, me and my half a lung, but still, it felt great nonetheless! My workouts got more and more difficult, longer and longer and increasingly intense. Some days I actually would cry when the realization that I was able to get back to a healthy lifestyle was actually happening. Sometimes I still tear up at the thought of how much exercise has saved me.

One of the treatments for IC is a very strict diet. Not everyone’s bladder flares up from the exact same foods, but in general one must give up all caffeine ( yes, I gave up caffeine overnight, you read that right) all acidic foods, including tomatoes, citrus fruits, juices, alcohol, chocolate, vinegar, many fruits and vegetables, all soy products, foods with preservatives and processed foods, beans, all gluten, most dairy and many many more. It has made my life even more complicated in many ways. As a result, I have lost over 40 pounds…. close to 45 if I’m being honest. I see the shock in peoples faces when they see me for the first time in a while…. although I personally believe this is where my body is meant to be now that I’m here. I have eaten healthy by most peoples standards for many years, but my diet now consists of only healthy, whole and organic foods in their most natural state. One of my best friends recently told me that if she had to eat the way I do she would kill herself… she was joking btw, and I take no offense! I mean, no wine, hell to the no!! However, it’s either wine with excruciating pain, or no wine. I suppose being the DD isn’t such a bad thing ( Ok I miss wine. There, I said it)

Because I have lost so much weight, I have been very determined to sculpt my body and look as healthy as I can. I had a moment in my class recently where we were doing  a shoulder exercise and I caught a glimpse of my arms in the mirror… I looked kinda ripped! Wowza!! It was a good moment, one of those moments that make you push harder because you know that you can achieve even more if you just keep going!

Since I have been teaching at the gym and training clients again, It has become my goal to help people understand that they CAN live a healthy lifestyle. That it is a privilege to be able to exercise and that even if you aren’t forced to eat extremely clean like me, you can and you should! That even if you have aches and pains, as many people do, that you can work around it, and that it is better to be active than sedentary, which usually makes pain even worse. Exercise releases endorphins which are feel good hormones… natural painkillers. Take it from me, I almost never feel the post thoracotomy pain during or for hours after a workout.

I guess my point is this: If I can come back from hell and one year later be exercising, teaching classes, training hard, and eating beyond clean, then anyone can! It IS possible to live a healthy lifestyle every single day. I wish that everyone could see that and put it into action. I wish that even on the days when there is absolutely no time for exercise, everyone could see that there is ALWAYS time once you can’t live without it. That as long as one has lungs, (even partial lungs) to help them breathe, they can push themselves to achieve a level of fitness that isn’t only for other people. That every day is an opportunity to put only healthy foods into their bodies, because we will never know what processed, sugary, simple carb laden foods are doing to our insides. That it is so important to keep our bodies healthy every single day, because you should ALWAYS be ready for battle. Take it from me.

I am so so grateful to be able to be active, eat healthy and take care of this body.  If and when cancer comes back to disrupt my life again, I will be strong enough to give it a run for it’s money. Funny, even though I have cancer, Mast Cell disease and IC, I feel healthy and strong, and I know now more than ever that anything is possible.

Ask yourself this: What do I want, how am I going to get it, and what will it really take? Then do it. You can, I promise.

Oh, but once in a while, go ahead and have a glass of wine for me.

Enemas, fruits and magic water.

Last night I received an email from a family member. In this email, it was explained that perhaps I should try coffee enemas. This family member knows of a friend who was “cured” of his cancer, and still continues to do 4 coffee enemas per day. She went on to explain that she thought, since I am about to start chemotherapy next week, that doing so would remove “the toxic chemo stuff.”  I thought this was odd, since the whole purpose of “toxic chemo stuff” is to kill cancer cells. If I flush it all out ( and by flush I mean, FLUSH) then why do chemo?

This morning, I awoke to several other Facebook messages pertaining to all kinds of Homeopathic remedies or even cures for cancer. One family member posted several “articles” from the FB page of a friend of hers who treats people Holistically about all different kinds of cancer treatments. One was about the Paw Paw fruit, which claims it is 10,000 times more effective than chemotherapy. Wow, I mean 10,000 times! Which chemotherapy I wonder? This holistic “researcher” has no credentials except that he researches. It says so on his website. He states all kinds of studies, but doesn’t ever say what they are, how they were conducted or for what kind of cancer they were studying. Just that they are proven to cure cancer.

I have heard about the Gerson Clinic in Mexico by many people who  tell me I should look into it ASAP! It cures cancer!! Get to Mexico! Just yesterday a very good friend of mine told me of a family friend who has the same cancer that I do. She emptied her family’s bank account (27,000 I believe) and went to the Gerson clinic. She was away from her family chasing a natural cure, not unlike thousands of others. When she came back to the US, within weeks she found out that her cancer had spread like crazy and had to undergo very aggressive chemotherapy. She regrets her decision and losing time that she could have been getting treatment that may have prevented this level of disease progression. She is currently hospitalized and in bad shape.

I’ve also been told by several  well meaning people that if I drink alkaline water it will cure my cancer. As well, I’m told  it will help flush out the chemo toxins. I really wonder if well meaning people have ever thought to research  chemotherapy. Just a quick google search to get a basic understanding perhaps. Chemotherapy’s sole purpose is to be toxic so it will KILL CANCER CELLS. I’m sorry I yelled, I just don’t know why this is so difficult to understand. Stop telling me to flush out the toxins. Symptom management is different than getting rid of chemo toxins, just to be clear.

I get that people want to believe that traditional medicine is evil and that the treatments mainstream doctors divvy out is useless.  I get that people who love me want me to know about all the secret conspiracies of the medical world and how the doctors are using me for a guinea pig. I do. People want it to be easier for patients like me, they want me to know there are ways of avoiding the pain of surgery and horrible side effects of chemo. Although, coffee enemas 4 times per day doesn’t sound  like much fun. Ouch.

Here’s my frustration: I have cancer. But more than that, I have Leiomyosarcoma ( LMS). You see, cancer is not one disease, it’s thousands of diseases. How can anyone claim to cure “cancer” when no two cancers are created equal? My LMS is even biologically different than other people’s LMS. There is no one cure for all cancers. That’s what makes me so skeptical. How can there be? Cancer is a “garbage can” term used to define many different diseases that all have several defining factors  in common.

When people approach me with these cures and claims, I usually ask them, nicely of course, if they mean that such and such treatment cures Leiomyosarcoma, and exactly how it works.  The usual reaction is a stare, and an explanation that has very little substance or anything to do with my line of questions other than anecdotal examples to back up their claims.

I am a researcher by nature. I fancy myself something of an expert on my disease. I know which treatments are available, what the statistics are and why they would be used. I know the nature of LMS and how unpredictable it is. I even know that compared to other cancers that are more common, there are fewer studies and fewer treatments. However I  can find that information, and I can read the science behind it. What I can never seem to find, no matter how hard I try, is actual scientific evidence for most of the claims made about so many of these natural remedies or “cures”.

My cancer has become very aggressive. I am faced with very few options. I can say that I have a team of Sarcoma experts, who see hundreds of patients just like me every year, in whom I have  the utmost confidence and trust. This says a lot for me, as I am not the kind of patient to just blindly follow what my doctors tell me. Quite the contrary, I am an integral part of my team and my doctors know that I probably have the same information they do and that makes our discussions quite productive for all. After all, if I am not as invested in my disease as I expect my doctors to be, then how can I make reasonable treatment choices? My point is, I trust my doctors, and I know that they want the best care possible for me so that I can live as long as possible. I have gotten to know my medical team well enough to know that when they go home at night, they are real people who probably get very upset when their patients don’t do well, or worse, die. I know they have my best interests at heart.

Cancer is a business. Yes “Big Pharma” is real in our country, and money can spell evil when dealing with patents and FDA approval and the like. There many ways in which cancer can be big bucks for lots of people. One of those ways is to  sell the promise of a cure to a group of people who may be desperate for one. To claim they have the answer that the evil doctors won’t tell you about. But guess what? They’re making lots of money selling all those natural, homeopathic, holistic cures. Have you tried pricing an alkaline water system? Wowza! The sad part is, all the claims and products and supplements and clinics in Mexico are all enjoying some big fat checking accounts. And people who believed them are dying.

I understand that people want to help. They don’t know what to say and they believe strongly that what they are telling me is the real deal. And maybe it is. But conventional medicine has kept me alive for 4 & 1/2 years now. If I had tried the snake oil, and not had medical doctors who scanned me every 3 months and operated on me swiftly every time my cancer returned, I could realistically be dead by now.

It’s hard enough to have cancer, especially stage 4 cancer. There is no stage 5. I need to do what I believe will work for me.  I need to feel supported about my choices and for people to know that I am intelligent enough to do what I feel is going to save my life. I respect those who make other choices. But I don’t want to constantly defend MY choice to utilize conventional medicine any longer. I don’t want to disappoint or offend anyone by saying this. Or by rejecting their plea to explore the cure they claim will work. I don’t have the energy to expend on what I believe would not be beneficial. Quite the contrary. I love the people in my life who want the best for me. And I want them to know that I have the best care possible, and in the end, if they know me, they would find comfort in that. If you have ever suggested alternative methods to me, please don’t think I am even thinking of you. You are one of many….more than I can count. Please know that I love you, and I am happy to share with you the vast amount of scientific evidence available to support my decisions. Or maybe just the fact that I’m still here is enough. Healthy, except for the cancer.

That Paw Paw fruit does look delicious though.