Well, well, well. I lay here in my bed next to my new HUSBAND holding our new puppy in my left arm at 5 am unable to sleep because of the large amount of steroids that I am on yet again and I thought this might be a good time we explain how we got here. The past month of so has been a constant revolving door of change and for the most part, not great changes. Actually, I should not say that but you will understand in a bit. Let me start from the very beginning… What a very good place to start (name that movie!)

My family had our annual beach vacation the last week in July as we always do and I started to experience some pretty serious back/left leg pain. By pretty serious I mean more than my regular 2 Motrin could handle and I started taking more hard- hitting pain meds. I also had blood work scheduled at the beach and got a call that my levels were so “in the toilet,” as those who joke about blood work results say, that I needed whole blood and platelet transfusions. This was troubling because I should have definitely been bouncing back from chemo and it would create another lag time between chemos. As you might recall at this point, I had been diagnosed with leptomeningeal disease as well as some remaining systemic disease in my spine and sacrum and the chemo was being used for the systemic cancer. I was told to go to a local hospital for a transfusion if I got too out of breath or symptomatic but ended up holding out until I got back to NYC.

The pain and poor blood counts continued over the next days/weeks, so my doctor decided it was time to see a pain/ palliative care doctor as well as a hematologist. Both were a seeming success. I am now on longer -term pain meds and have different ones for nerve pain/serious bone pain. But we needed to figure out why this was happening. In hope I suggested that it was just crazy inflammation pain from the last round of radiation I got from my whole spine. Some doctors agreed but my oncologist suggested it might be something more and ordered a PET scan to determine. I got that and was called Aug 21st at 4:30 pm (offices close at 5) to go over the results by a radiation oncologist that I had only met once. He told me that the PET showed that OG Dave and his boys have invaded my lungs with four large spots, some surrounding lymph nodes in my chest, my left clavical, my spine and some new spots in my scrum/ hips which is what was causing the pain. We then planned to start radiation to my hips/sacrum Monday for pain relief. This all occurred in the parking lot of Wegmans. I burst out crying and screaming and panicked. LUNGS. That’s what got me. I cry-explained it to my mom who simply said “I won’t accept this!” and got out of the car and went to get vegetables for me to juice. I told Kyle and my family. I called my regular oncologist and they said they wanted to see me Tuesday.

And then there it was… Sense of calm… ahhhhh. It came back and was very apparent. It truly rises from my gut. I know I will be ok and I will survive. I honestly FEEL it. This legit might sound like I am having a mental breakdown at this point but it’s just how I feel.

This happened to by Kyle’s bachelor weekend and I was not going to take that from those most deserving of men. I am so happy that he went and his boys showed him a hell of a good time. Memories and some unfortunate pictures were captured. We are both so incredibly lucky to be surround by our amazing friends who keep us going daily.

My brother Jake, who is a researcher by trade, showed up the next morning with some vegetables, books computer and supplements galore to PA and we were ready to go with the Gerson diet take over that my body needs. I am in go- mode. I may have mentioned before but it is extremely specific, 13 juices a day, 3-4 coffee enemas a day with raw and cooked foods at every meal and many, many supplements. I will be doing this along some veryyyyy effective with chemo.

That night I did not want to sleep alone so my mom slept with me along with Winnie and my parent’s dog Ruby. You can imagine we were up for most of the night. Around 3 AM, I felt my mom stir and rolled over and asked if she maybe thought we could have a wedding ceremony the next weekend. She said she had been thinking the same thing. The next morning wedding prep began.

August 24^th-28^th was spent getting 5 rounds of radiation and meeting with the immunotherapy doctor whose treatment I had asked for prayers to be a match for. I forgot that great news! That stinky PET that showed all the new lung and all over nodules also showed that the whole brain/spine radiation killed the leptomeningial disease and it did not show up as active! The immune-therapy would be the nail in that coffin. We decided that it was not first priority right now but will happen in the next couple months so looking forward to that.

Let’s add puppies and wedding to the crazy! We had to keep it small to the wedding party and immediate family only since we could not find a room to accommodate a dinner larger than 75. But there’s that old saying that things that are meant to be will be and the wedding was pulled off in 6 days (take that Kardashians!) and was amazing. We are eternally grateful to our fairy godmothers Debbie Colarossi and her helpers who claimed they were going to add some roses to the centerpieces and pulled off a nicer reception than people can pull off in a year of planning. We were mind blown.

The week prior to the wedding, Winnie had been acting very strange. Not herself, very tired, panting. While trying to give her her antibiotic, my Mom and Kyle witnessed Winnie have a seizure during the week. We took her to the ER that night and she was acting pretty normal again. They checked her out and sent her home. We took her back to the vet for an over night stay because she still was not normal and picked her up Friday am prior to leaving for the wedding.

Also to add to the crazy, we got our new puppy, Billie, Thursday night. We had been wanting to have two pugs together. They just seem to go better in twos and the timing is never great. This timing happened to be terrible but we did it and I am so happy we did.

Long story short, pups meet, we drive home, Winnie is not ok. I held her the whole way and she was shaking. Kyle and his mom took her to the ER in Clarks Summit and they wanted to keep her overnight. Kyle received a call at around 9 AM the morning of the wedding that she had had a seizure and gone into cardiac arrest and they intubated her. They never were able to restart her heart and he told them to stop. Turns out she had a rare genetic condition called pug encephalitis that is always fatal. I take comfort in knowing that she was out of it and asleep and not afraid when she died.

I was on my way to get wedding nails done with my bridesmaids. I ALWAYS had this dream of seeing Kyle at the end of the alter for the first time on our wedding day, instead I saw him to hold our little girl for the last time and make arrangements with our great friend, Mark James, to have her cremated. Rough morning. Winnie really was hilarious, loving and got me through such incredibly hard times. She made me smile every single day. And excuse my French but she didn’t give a SHIT so she would have wanted us to turn the day around and have a good wedding day and we did.

Again, the wedding was incredible. Small and intimate and filled with love. I was SURE I was going to pass out when the doors opened to walked down the aisle. As they did, my Dad turned and said “wait! My fly is down!” and the ice was broken for the evening and it was only fun had! I FINALLY married the love of my life. We were calm and happy on the alter and I felt so much love boil inside of me and I said my vows. He’s truly the perfect person for me and some how we have so much fun despite this shitty situation.

     

OK, back to the medical shiz. I floated on cloud 27 (way higher than cloud 9) right into my bone biopsy of my left hip. As I am laying there in recovery, I received a phone call from the hematologist I had seen the week before. I handed the phone to my mom, feeling not so clear but the doctor wanted to talk to me. He explained that there was genetic abnormalities on my blood results that are indicative of a condition called Myelodysplastic Syndrome. Basically, my blood cells can not recover and I might have secondary leukemia caused from getting chemo. Normally this happens on average 5 years post- chemo. Robin Roberts is a recent famous face that had this. So now, let us recap. I have rhabdomyosarcoma, leptomeningial disease (rhabdo cells but hard to treat area) and MDS. Three type of cancer? Why the hell not…

This news clearly hit us like a swift kick to the face. It obviously makes treating the newly-spread Rhabdo more difficult because my cell counts would not be able to recover. I needed to see a specialist who was not available until this past Thursday Sept 10^th. The doctor was great, explained everything in detail and was able to accommodate my biopsy early so that I could get back to PA for a very important funeral. This event was more on my mind than anything and I am very happy that I was able to be there.

Friday afternoon, Kyle and I were sitting on the couch with the puppy and I decided to call the doctor to find out the results. You ready for some GOOD news?? She told me that not only do I NOT have Leukemia (which we were all pretty SURE of), but I possibly do not have MDS at all!!!!! A LITERAL MIRACLE. The changes in my blood show sarcoma cells in my bone marrow, not leukemic changes. She was not sure how to explain the changes in the blood but now secondary cancer was the best news I had heard in a really freaking long time. She is still working on explaining it. I met with her again today and she said good to go on her end and now its in my regular oncologist’s court on how to proceed with chemo.

I have an appointment Monday, following the original wedding reception for 300 (we don’t play) this Saturday so stay tuned for treatment updates. Until then, I will be staying on top of my enemas, juicing, supplements, positivity, pain meds, puppies, fun, laughs and LOVEEEEE.