I have got a lot of explainin’ to do!

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 24th-28th 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.

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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.

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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.

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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 10th. 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.

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Love can and will cure!

Love cures.

I am sure of. I didn’t come to this conclusion on my own though. I have learned from many knowledgeable people and faith has kept it at the forefront of my mind. As I mentioned in my last post, I am no longer fighting Dave and Dave the 2nd, I am transforming them. Transforming them into healthy cells and a healthy body. FUD is no longer what it used to be. I am playing around with some new words like forgive and would love some suggestions to match my new attitude. Anyway, a bunch of really awesome stuff has happened since my recent diagnosis that is proof of this and that I would like to share. I also want to update everyone on what has been going on since then.

Lets start with the goodness. I wear a bracelet with the Mother Mary on it every day. I always thought that wearing it was kind of “enough.” I pray often but have a newfound appreciation for Mary. My oncologist came to the hospital to explain more about my new diagnosis of leptomeningial disease and discuss a plan for going forward. As I said in my previous posts, I felt calm and confident during this discussion. I can’t explain that feeling but it was so very apparent to me. Right after the doctor left, I was reaching over my bed to grab my charging phone and I heard a loud clank. I looked down and the Mary charm had fallen onto the metal part of the bed. I must admit that when I saw it my first response was “oh great, look who jumped ship.” My Mom screamed “No! Look who is reminding you that she is here for you!”? Again, I felt calm. She was right. I got a serious reminder and my faith has been strengthened immensely.

We had made the decision to push our wedding back to next June a few months ago. Every time I told someone that, it felt terrible. The day after I got out of the hospital, Kyle and I were lying in bed and discussing everything and through my tears I said “well I am going to live!” and he agreed. So we decided that since I am going to live, we are going to have to have the bridal shower because we will need some new plates, damn it! I told my Mom and bridesmaids the next day and BOOM the shower and the wedding are on! ON LIKE DONKEY KONG!

Prior to any of the wedding festivities starting, I had to start my Dave(s) transformation. I began what was originally supposed to be 20 sessions and ended up being 17 (to save my eye sight!) of radiation of my whole brain and spine. The mask was extremely tight and very uncomfortable. I normally don’t mind things like this for a short while but this was pretty brutal. I had to go as far as taking anxiety meds prior to each treatment in the beginning.

Upon being diagnosed with leptomeningial disease, I asked my family to read a book that I had found months back called Radical Remission. The book is about just that. People who were given a very grave diagnosis and who survived for many, many years using alternative methods or a combination of alternative and traditional treatments. SO began my new lifestyle. I started became vegan (as previously stated), started ramping up my acupuncture treatments (Loveeeeee), began seeing a Reiki person in NYC (hello, Sky), went to see a Ayurvedic doctor (hello, Dr. Naina) and got serious about my meditation because of the two previously mentioned people. Both have changed my life since meeting them. AND both told me that they got a feeling, through their different methods, that I WILL SURVIVE CANCER! The Ayurvedic doctor taught me a new way to meditate that I think could be applicable to everyone. She told me to close my eyes and picture a purple light in between my eyes (my third eye). Then move the light around and give love to every organ and thank that organ. It should take about 20 minutes. I have been doing this as well as adding some hugs to the tumor spots and previous tumor areas.

And now, some updates.

On August 4th, fresh off an amazing week of vacation with my entire family in Rhode Island. I met with Dr. Kim Kramer, who will hopefully be transforming the cancer in my meninges to healthy cells. Dr. Kramer developed this treatment at Sloan Kettering where radioactiveimmune cells are injected directly into the cerebral-spinal fluid via an Omaya catheter. The catch is that my tumor cells have to have a certain protein on them that the immune cells may recognize. Without this protein, I am not eligible for the treatment. We had no clue about this but I am confident that I am a match for this treatment. All prayers and good thoughts are welcome to ensure this!

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After seeing Dr. Kramer, I went to see my regular oncologist, Dr. Tap. He came in looking pretty serious. He said he was concerned, based on my blood work, that cancer cells are still hiding in my bone marrow which is caused my cells counts to recover much slower than they should be. He would like me to see a Hematologist to figure this out. We asked about bone marrow transplants and his reply was simply “I don’t know.” In order to attack the bone marrow cancer, if it is there, I would need high doses of chemo, which he does not know if I can handle at this point. Let’s pray that the hematologist has a solution, I can get the chemo and heal that right up.

I have also been having a great deal of pain in my back and down my left leg, which I chalked up to post-radiation pain. Dr. Tap wasn’t so convinced and said if the pain continues I should have a PET scan. Let’s again pray that the pain is due to radiation and not to anything new growing!

NOW back to how I am going to use love and some other tools to heal me. First step is acknowledging how scary this is and the possibility of what could happen. I can’t be strong and in a good place without this. It is hard to allow yourself to do but I have learned that it is necessary. By suppressing these thoughts, I am not helping but actually hurting myself. My favorite response when I voice that I am scared or sad or whatever is when the person acknowledges it by saying something like “Wow. That must be very scary.” Shutting it down just doesn’t help.

Diet, juicing, meditation, yoga, deep breathing, essential oils and supplements are all a part of my daily routine now. I would like to get a little more serious about all of them but I am trying. I am also trying to feel the love that people are giving me every day, take in a big deep breath of it and be truly thankful. It’s easy to close yourself off when you are scared or feeling down and not really feel this love. I also am trying to make more of an effort to love my body and myself and thank myself for all that I have been through.

In closing of this pretty rambling post, I wanted to share a little story. I met a priest a few weeks ago that blessed me with a relic. During my visit with him, we chatted for a while about my diagnosis and what I have been going through. He said he believes that I am experiencing this in order to see the good in all of those around me and for them to show how wonderful humanity is. My parents and I both nodded in agreement. I have been shown how amazing and good people can be and I feel so incredibly lucky. I know my family and friends agree. It seriously blow me away daily. I cannot thank everyone enough. You keep me smiling and give me strength and faith in my darkest days.

I love you all. I love my journey and my life. I will love every bit of this cancer into healthy cells.

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Dear Katie, Love Vonna

Dear Katie,

Remember when I ran the Philly marathon a few years ago? Quick refresher: it was not my best day. To be honest, I don’t even remember much about it. One thing that does stick out is that Justin Bieber was on my playlist (yikes). Another is you and all of our friends cheering for me at multiple spots throughout the race. In fact, I have two vivid memories of you running at different points – with me at the beginning of the race so I could blow my nose, and towards me at the very end of it so you could encourage me to finish. I am 100% certain that you guys being there that day is what motivated me to finish that race.

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Fast forward to now, 2015. Now you are the one running a marathon, and we are the ones running behind you. In the past year, you have learned a lot about yourself and your family and friends. I know this because of what you’ve told me and written on your blog. Now I want to tell you what I have learned from you over the past 12 months. I will take the liberty here of assuming that those who know you best and/or have been following your story will agree with me.

First, you have taught me what strength is. Knowing you for 30 years (yikes x2!), I already knew that you were a strong person.But during this past year, you have shown us all what strength really is. It is not finishing a running race that is not going well. Strength is finding the ability to share some of the deepest difficulties of living with cancer with the world while still maintaining a smile and sense of humor through it all. This, of course, doesn’t mean that there aren’t some days when you just don’t feel like talking or laughing. That is understood. What it does mean is that when you’re weak or sore or sick or scared, you face those feelings and come out ready to fight again with a picture or blog post or video and a new energy that reminds us all what true strength is. You have completed this up-and-down cycle gracefully many times over the past 12 months – probably more times than you have shared with others (after all, what kind of a middle name would Grace be if you didn’t have it!). Doing so requires a type of strength that redefines the word and a personality trait that is one in a million. You have both of these things. Thank you for sharing them with all of us. It has helped a lot of people who have been praying for you and pulling for you over the past year.

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Speaking of all of those people, you have also taught me (and them) how important a positive attitude is in the face of adversity. I hope you understand how many people you inspire every day. Your reach far surpasses your immediate family and friends. Your blog has over 1,000 followers. Your Facebook and Instagram posts routinely have hundreds of “likes.” As far as social media is concerned, that is, like, Bieber territory (yes, that was a second JB reference in this post. I am just as ashamed as you are). Over the past year I have heard from family friends with cancer about how much strength and hope your story has given them in their own fight. I have heard from friends and friends of friends how your story has given them a truer sense of understanding and compassion. I have heard from people I don’t even know who read your blog and pray for you every day even though they’ve never met you. All of this is a testament to the way you have approached your situation. You have amazingly been able to keep a positive attitude throughout this entire thing. Because you have let us all take part in the rollercoaster ride that you have been on, you have become a true role model, not just for others with cancer, but for anyone who is trying to smile in the face of whatever adversity they are facing. This fact is evident in the amount of people who have found comfort in your attitude and mindset. It is just one reason why Cycle for Survival selected you to give the opening speech at the event back in March. Your positivity is contagious and shines like a light for the immense amount of people who think about you every day (as if you didn’t have enough to do for yourself over that time!). Thank you for this inspiration.

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Finally, you have taught me what gratitude is. Not one thing that anyone has done for you over the past year has gone unnoticed or unappreciated by you. Amid all that you have had to go through, you were concerned with thanking people for their donations to Cycle or the notes and packages that they have sent you and Kyle. This sense of gratitude that you have displayed has made me re-examine the people and things in my own life with a renewed sense of thanks. Most importantly, it has made me thankful for having you as a best friend. I would like to say that I would handle this situation as well as you have, but I would be lying. Your strength, positivity, and gratitude throughout these past 12 months have been and continue to be admirable. We are all so lucky to call you a daughter, sister (-in-law), aunt, niece, fiancée, and friend.

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Throughout this past year, I know what has motivated you most to regain your health: Kyle, your mom and dad, brothers and sisters-in-law, nieces and nephews, extended family, friends, little Winnie, and of course, yourself. But you are not only fighting for yourself and for all of us. You are helping everyone who has ever been in your shoes and anyone who will find themselves or a loved one there in the future. I hope knowing all of this inspires you to keep it up. When it’s all said and done, if your marathon goes anything like mine did, you will reach the finish line by means of your own strength and willpower (and that of the people that love you), wonder what the heck just happened, recover, and realize that you are an even stronger person than you were when it started. And when you get there, we will all be there celebrating you.

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I love you!

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Vonna

In the words of my girls, Destiny’s Child …

In the words of my girls, Destiny’s Child …

I’m a survivor (What?)

I’m not gon give up (What?)

I’m not gon stop (What?)

I’m gon work harder (What?)

Survivor

So here we are. Let me explain the past insane 6 days. Another word to describe this time is terrifying. As you might recall my last scans were in February which revealed a newer spot on my lower spine. This meant chemo would go months longer so we pushed our wedding back to next year. I was sad but it sounded great that we would be able to celebrate the wedding with all of this behind us. I had asked that the MRI of my back that revealed this new spot be added because I was having numbness and tingling down my spine when I bend my head forward. As my Dr. was explaining the scans, he said while this new spot was not good news, he was happy because he had thought it was meningitis. I thought he meant you regular, run- of- the- mill, meningitis (not great but still). I now know what he meant when he said that. Anyway, I started chemo back up. I got 3 rounds of the chemo that I received in the beginning of this journey that shut my cancer totally down and yielded all clean scans so these seemed very promising. I managed these 3 rounds surprisingly well but continued to have increasing back pain and the numbness and tingling down my spine. Kyle and I decided to play Venus and Serena and take up tennis a few weeks ago and I was hoping maybe it was just an injury or new fracture from that.

When I am in the nadir period from chemo (when my blood cells are at low points) I routinely take my temperature to make sure I don’t have a fever. If I do I have to be hospitalized to receive IV antibiotics and search for a cause of infection. Thankfully, every time I have been hospitalized no infection has been found and I have come to realize it is just how my body reacts to having low cell counts. I felt a fever brewing this past week and on Thursday I was achy in every inch of my body. I called the Dr. and they asked me to come in for blood work Friday. My platelets were very low and they said I needed a transfusion and to head to the hospital right away to get it. I went and while I was waiting for the platelets I took my temp (who carries a thermometer in their purse, this chick) and sure enough had a fever. I headed downstairs to the ER and was admitted. I had my regularly scheduled scans on Friday and Monday so I asked if I could get them while in the hospital.

I saw one of the nurse practitioners from my regular sarcoma team on Saturday and she said we would go over scan results Sunday. I couldn’t stop worrying after that conversation and asked her to come back and tell me what she knew. She told me that the MRI of my brain showed that there were 3 new small spots on my brain but that the doctor on service would explain more the next day. Like I said earlier, I knew there was something going on in my spine so I braced for those results. On Sunday, the team told me there were spots in my spine also and that all of these were consistent with leptomeningial disease. This is a very rare complication of cancer where cells get into your cerebral spinal fluid and take up shop. This explains the tingling in my spine. This is second generation Dave. New Dave is pretty much chemo resistant and difficult to treat. I said “pretty much” because I am still hoping some new drugs we haven’t tried will have some great effects. Valerie Harper from the Mary Tyler Moore show and more recently she Danced with the Stars has the same thing. She diagnosed in 2013 and is still rocking so I am hoping to follow her lead.

I screamed and cried after being told this and doing a nice little Google search. I did not think there was much left to do. Passing this information along to Kyle and my family and friends was devastating. It took some hours to pull myself up. My Mom usually never cries in front of me and basically could not stop. It was tough. My brother, Jake canceled his work trip to Chicago and my brother Andy was on a bus from DC immediately to come and sit with me. My Dad was there as always to be our hero and to drive me home from the hospital.

Monday, I met with Dr. Tap, my regular doctor. He graciously sat with us for almost an hour and explained everything. While he said he was worried many times, he also said there were options. He is one of those doctors who really makes you feel like he cares about you and I trust him whole-heartedly. As he was speaking, I felt calm and confident. Not sure how I can explain this, but it was similar to my feeling when he sat in the same spot across from my hospital bed and told me I had aggressive stage 4 cancer. I strongly feel that everything is going to be ok. That I will be fine. This sounds strange after being told you have incurable cancer, but I feel it.

This meeting was followed by a PET and CT scan to see if Dave the 2nd was anywhere else. Great news, he is not!! Nothing that we didn’t know. Finally a win! After, I got an extensive Neuro check which reminded me of my days with my beloved 12 West gals. I did most of the exam without being prompted and let me tell you those serial 7s are not easy. I have always been terrible in math and there were about 10 people in the room. Thankfully, I got them but the time it took me might have caused me to loose some points haha. The reason for this check was because my new diagnosis of LMD can cause serious neurologic problems. I am hoping my treatments and new lifestyle (will get to this in a minute) will keep me free of those.

I also met with radiation oncology. These are my people. Radiation is going to be my treatment for now. Because my tumors are solid, injecting chemo directly into my CSF isn’t as effective. I will be getting 20 radiation treatments to my whole brain and spine starting next Thursday. I am so thankful for this treatment but getting mapped for it on Tuesday was rough. I spoke with the Dr. before who told me that she has done this about a half dozen times and it has given people some good months. Again, I won’t accept this as my future because I will have not just months but many, many, many years, but still, its not so nice to hear. Then I had to get my new fencing mask made, which is not as fun as the last one. My chin was pulled all the way up and taped to the table. There was a hole cut open for my face in the last one and in my new mask my eyes and mouth must be closed and covered and there is a tiny hole for my nose. Its plastic mesh so I can breath but not so comfortable. I wanted to cry but I don’t think I physically can with that baby on. After they applied my new mask and bolted it to the table, the nice ladies of the mapping department then pulled off my clothes and wrote all over my skin then stuck some needles in my stomach and side to give me my new tattoos. They warned me in advance and screamed talked to me the whole time, but it was pretty traumatizing. Again, I am incredibly thankful for this treatment but there was a moment of “is this worth it?” I will be on the table every day for over an hour getting my brain radiated. When I asked myself this question, I must admit it took me a bit but I came up with a big FAT ASS YES! I have the best fiancé, family and friends and am from the most amazing town in the world, and I am not leaving. Not anytime soon. Sorry Dave the 2nd. Adios statistics. Bye Felicia.

Survivor 2

On to my new lifestyle, I came across a book called Radical Remission, months ago when I was researching a few things. I started reading it and told people about some of the principles in it. I stopped about half way through. The book is about people diagnosed with cancer who had few or no options left and who explored alternative treatments to heal themselves and survived. It led me to learn to meditate, some diet changes and a few other things. Once I heard this new news, I knew I had found it for a reason. I told my family and we all began reading it. I am now a loud and proud VEGAN. Whoop! Let’s go veggies! I will starve the cancer with my new diet and kill it and heal myself from the inside out. I am exploring some alternative treatments and have begun acupuncture, reiki and have a new found love for meditation, which I am trying to do a few times a day. Again, I am confident. My Mom, Jake and Kyle are all vegan as well. Let’s party. ALSO, I have begun speaking to Dave. This started after Kyle’s Mom sent me an article about Valerie Harper. She said she speaks to her cancer nicely (which is hard) and tells it that it is time to go and there is no room. I started last night. Dave and I had a nice 15 minute long talk while listening to the Pandora meditation channel. I told Dave that he has completed his mission in teaching me about how amazing this world and the people in it are and that he won’t like my body anymore because of my new diet and the healing that will be taking place. So, please channel your thoughts to tell Dave nicely, that it is time to go.

I want to thank everyone for all of your love, support and most importantly prayers. Every single thought helps me. I have cried many happy tears in this past week. I am looking forward to thanking you all in person ❤

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Happy Mother’s Day

Happy Mothers Day

Sorry but I must…

I must put the feelings that I have for my Mama “on blast” because the world needs to know. This may sound like bragging, because it is. Lend me your ears…

My Mom is the best Mom in the entire world. She is actually the 2015 recipient of the “Best Mom in the World” award as voted on by every one, ever. This has been clear to me since the day that I started growing in her womb, but this past year has made it blindingly obvious to all. As I have mentioned in previous posts, the day Dave announced his stupid presence, my mom announced hers as well. My shield. She was my obvious first call. I said, “Hey mom, I have a ‘mass’ in my head,” and she calmly replied “ok, we will do whatever we need to do.” And that was it. She packed her necessities and far too much food and moved onto our lumpy couch in New York.

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Of course, upon stage four cancer diagnosis, I decided we needed a puppy, Winnie Grace Reap. My mom has been just as much of a “Dee Dee” to Winnie has she has to her other seven grandchildren since day one. Large amounts of steroids and headaches kept me up most nights in the first couple months. My Mom slept with Winnie every night, and continues to, to make sure she is well cared for and that I can sleep. She still makes me feel like Winnie’s Mommy some how but we all know who Winnie favors. She can’t not. I watch my mom stand up off that lumpy couch and limp around for a little while in the mornings because it most certainly is not comfortable but she has never once complained. She occasionally has the luxury of napping in my bed.

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She makes a full dinner for Kyle, Winnie and I every night. I am talking a roast, pasta or whatever our hearts’ desire. She then attempts to clean it all up if we don’t make it in the kitchen fast enough. Also, she still saves the last bite of her delicious meal if she thinks I might like it no matter where we are. It happened Friday at lunch…

Depending on the week, we make our way to chemo where she sits on a hard “visitors” chair while I have a recliner. These sessions can range from 2-9 hours and can go numerous days in a row. Thankfully she has a thing for celebrity gossip and doesn’t seem to be getting bored with it anytime soon. She has missed important doctor’s appointments of her own but she has never missed anything of mine, not one. She is my right hand lady at every single metting and that nursing background doesn’t hurt! I got an Ace in my corner. She also admitted to wanting to tousle my doctor’s hair the other day and never ceases to make me laugh.

The many times that I have had to be hospitalized, you guessed it, there she is. On those nights, she slept on a pull out single recliner chair. Most of us wouldn’t be able to put up with this for more than a night, she has done it for 10 nights in a row. Some serious physical discomfort while trying to keep me sane, upbeat, and laughing. She is rarely ever unsuccessful. I have only seen her cry once in front of me yet she has dried every one of my tears.

More recently, as I have been feeling better, I have been asking her to stay in PA with the love of her life, my Dad, and the other love of her life, her boxer, Ruby. I know she is happy to be home and have some sense of normalcy but her heart is always with me. If I even hint at being “bored’ (quite the complaint when I can say I am alive) she threatens to get one the first Martz Trailways bus to NYC.

She plans my bridal shower and my wedding pretty much daily and ALWAYS with a giddy little smile. Most of the time it overwhelms me, but not my Mom. She can literally throw a party for 300 with 10 minutes notice and everyone would leave raving about the food. I think she is magic. I am so excited that she is my “mother of the bride” and know these will be some of our happiest times.

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As I mentioned, I occasionally have trouble sleeping and somehow she always seems to “know“ when I am awake. She tells me to wake her but I just can’t, that couch looks too comfortable. She deals with my occasional annoyed 16 yr old whine voice and responds in a calm, diplomatic, and motherly way to my stupid comments even when I know I might hurt her.

She is not only the mother that I aspire to be, she is the PERSON that I aspire to be. My Mom and my Dad are the two most selfless and generous people that have ever walked this earth. This is a fact. I got her a Mother’s Day gift this year, which is lovely, but I would literally have to build Rome, a couple pyramids, swim across the Atlantic, climb Everest, learn Greek, do about 30 million Iron mans and right every wrong in the world to express how grateful, thankful and lucky I feel to have my Mom as my Mom. I plan to spend the rest of my long, healthy life doing so. I will have that life because of her. I am ecstatic to try to repay all of this love, which I know if impossible but I will try my hardest.

We can all learn from my Mama. She is truly a gift. She is a mother to her children, her friends, my friends, and any random child, person or animal that needs a mother figure. She does this without hesitation and with a heart 100% full of love.

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I know she will “yell” at me and be embarrassed for writing this. But like I said… the world needs to know.

Love you forever, Kate

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“If you’re going through hell, keep going.” -Winston S. Churchill

“If you’re going through hell, keep going.”
-Winston S. Churchill

Dear Dave,

I’m writing this piece of hate mail to you on April 15th, 2015. To most people that’s our nation’s much-loathed tax day. But to the first four in my nuclear family, it’s a very happy occasion. Thirty years ago on this date, Kate was born and that was a day that our lives changed forever. I was almost nine years old when the stork dropped her off and she melted my heart down then, and forever, into a pool of simmering brotherly mush. Our relationship has changed as we’ve each aged thirty years since then. But one thing has stayed the same. She’s part of me – my family, my blood, my only sister.

Dave, when you attacked her, you scored the most direct hit possible on my family. Kate’s the glue, the one who loves and is loved by all of us, including her nieces and nephews, in the most intense and unique way. She’s not just nuclear family, she’s all of our best friend. This is why that day last June when we got her CT scan results was our own Pearl Harbor Day. It took us many weeks to get our heads back on straight and months to get some semblance of our lives back. But make no mistake, you hit us hard and the last ten months have been awful. Seeing her hurt – whether mentally or physically – is just heartrending. Having to endure it has been a huge personal learning experience for me, and it’s not one where I like the results. I’ve found that I’m in a sort of E.T. / Eliot state when it comes to Kate’s well-being. When she’s doing well, I’m doing well. And vice versa.

But selecting Kate as your victim was a fatal mistake. You should have known that by attacking our most sensitive spot, you were going to evoke the most ferocious, violent, angry and united response possible…because SHE is the person we, the Hennemuth family and the entire love and support network behind us, are wired to fight the hardest for.

You’ve also brought upon yourself the wrath of a young woman with an overwhelming will to live. Kate’s performance in this death match has been beyond stellar. As I said to a good friend who was in a state of awe at Kate’s courage and grit, we didn’t know what kind of the fight she’d put up until she was tossed unwillingly into the ring. Her strength, honesty, and good nature throughout have brought us to our knees with pride, love, and inspiration. In addition to being that person we loved anyway, this fortitude has rallied her fan base around her and concentrated their prayer and energy into a Dave-killing machine of its own.

And on that note, let’s review some of the highlights and key contributors to this ass-whooping performance so far.

-Right out of the gates, a few key leaders of Team Kate emerged and produced and sold several hundred FUD T-shirts and Team Kate bracelets.

-Kate was swiftly connected up with one of our country’s (and probably one of the world’s) leading sarcoma destroying experts, Dr. Bill Tap at Memorial-Sloan Kettering. He told us the disease (aka you, Dave) was diffuse and advanced at the outset. But after two brutal rounds of chemotherapy, the cancer had been reduced to a state of complete inactivity. Of course it’s never that simple but that’s what the opening return salvo of this battle looked like.

-My dear Mom, a happy person who loves her home, husband and dog, packed a bunch of her favorite plastic grocery bags and moved to Manhattan to sit every minute of every day with her daughter as she suffered through treatment. She just wouldn’t have been everywhere else. Kate’s outstanding and supportive fiancée Kyle has been right by her side (and now my Mom’s too in that 1BR apartment) the entire way. My Dad has been to New York for every important moment and to chauffeur Kate and my Mom back to Moosic Lake for some weekend R&R between treatments. And an entire squadron of friends and family at Moosic Lake have back-filled my Mom’s absence to help out my Dad with meals and entertainment, to care for the dog etc. This has been going on for over ten months now.

-Nearly 100 people showed up at St. Ann’s Novena last summer specifically to pray for Kate. And I witnessed no fewer than a dozen people I didn’t even know come up to my Dad to express support one night that he and I went out to dinner. Indeed, from my vantage point in CT, it feels like the entire Scranton, PA area has been wrapped around Kate like a warm blanket since the whole thing began.

-One of my dearest and oldest friends, Dr. David Cognetti is an ace ENT cancer surgeon was a rock of knowledge and support in our darkest days early on. Many families who suffer a cancer battle are always looking for answers. We were lucky to have our own personal coach in David. Cogs, I am forever grateful.

-Many of Kate’s best friends in this world surprised her this winter with a party in which they trimmed their hair and donated it to be made into wigs for suffering cancer patients. They had been plotting this event and growing out their hair for months in advance.

-Team Kate raised $52K for Cycle for Survival to research the treatment of rare cancers. Overall, Cycle for Survival’s harvest this year was $25mm+. These events are just nuts…by which I mean full of energy and beyond inspirational. The purpose of that energy, of course, is killing you, Dave. Kate was asked to kick-off the even with a speech and she stood up in front of hundreds of people and nailed it.

Which brings me to Kate herself. Her highlight reel is too long for this blog post but I will relay one quick story that I think about all the time. Before treatment began and when the cancer’s footprint was at its peak, most of Kate’s face was numb, her headaches were unbearable and her senses of taste and smell were gone One day she was having particular difficulty with sporadic blurriness and twitching of one eye and we worried that the connecting nerve might somehow be severed (ie eaten through) or otherwise fail. Kate took a deep breath and delivered me her perspective on the matter: “Well if I lose that eye, at least I have another one.” It was similar with her senses of smell and taste: “I mean I’d like to have them but I can do without.” Most of us wouldn’t count these functionalities as luxuries. And few of us would have been looking on the bright side in such circumstances. (Keep in mind that she could barely even stand up some days because of the headaches.) My sister’s attitude and her survival remind me every day that there is always worse and that being less than hopeful and positive – which I have a bad tendency to do – is pointless.

This is what you’re dealing with, Dave. You have already endured medieval-grade torture. And it’s not going to end until every last cell of you withers in a bath of caustic chemicals or is incinerated by unbearably intense radiation waves. Should the chemo and radiation come up short – and that certainly hasn’t been the case so far – we’re going to embark on a regiment of alternative treatment about which there are volumes of data and many positive outcomes. (Kate is already studying up on this.) Basically, we’re going to hit you from every angle, with everything we’ve got, for as long as it takes, until you are crushed and beaten and forever incapable of re-entering the ring. To adapt the famous Winston Churchill quote to my own needs here: We will “never give in. Never give in. Never, never, never, never” will we stop loving or supporting our dear Kate in her battle to rid her body of her cancer and to live the full life that she wants and deserves to live.

So dear Kate, as you sit on your 30th birthday courageously receiving your chemotherapy treatment, please remember that all of us on Team Kate are forever behind you.

Happy Birthday, Kate. We love you.

Jake

Some Updates

Some updates

When I started this little blog baby, I wanted to it to be an honest and up-to-date account of this journey. So some status updates are needed.

Every person with cancer calls it a journey, right? Well, it is. You experience the highest highs and the lowest lows. Sometimes they can happen simultaneously. I experienced this same thing a couple weeks ago.

We celebrated Kyle’s 30th birthday and Cycle for Survival the weekend of March 8th. It was such an amazing weekend filled with fun. Cycle for survival was so uplifting and inspirational. I loved seeing all the support that the riders showed for their loved ones and the thunder that Team Kate brought. I was asked to give a speech to open the event and what an honor! As I stood of there, I experienced the definition of “feeling the energy in the room.” We can’t wait for next year!

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Back to highs and lows happening simultaneously. The week prior to all this fun, I got the results from my latest scans. The night before my appointment, I logged on to my hospital account and was able to see my radiology reports. Upon reading my MRI result, I saw that were was a “new” spot on the bottom of my spine. I cried harder than I have in my life probably. It was one of those cries where you can’t catch your breath. I was scared and disappointed. I was finally seeing the finish line and now it just got pushed back who knows how many miles. I was also terrified that this spot could have grown while I was getting chemo. Some pretty frightening thoughts crossed my mind. It was impossible to stop them. Kyle tried for hours to calm me and tell me just to wait until we talked to the doctor before assuming anything.

Sometimes I need a minute or even a day to get to together but you better believe I can and I will. I want my life so bad.

I woke up the next day with a new attitude and went to the appointment with my family and upon speaking to my doctor and my fears were relaxed. He was calm and confident. I asked if the spot was new or had been there and he said he could not be sure. It was new on this MRI but had it been slowly growing in that spot from the beginning? Who cares at this point right? He said everything had been going so well that he really has hope in his heart that this is a little blip and we will fight until its all gone.

And so, the new plan was put into place. I would go for a bone/bone marrow biopsy, followed by 5 rounds of radiation and a new and longer chemo plan.

(*Side note funny story: I went into the OR for my bone biopsy discussing traveling to my most favorite place, Spain, with my awesome nurse. When I woke up I was telling her fun bars in Spain that she should visit. I even recall spelling a few. She was typing them into her phone, so it must have sounded pretty good. Never let anesthesia hold you back from discussing a good time. haha).

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¡Viva España!

My run with chemo was supposed to end in July and now there is no end date. This, of course, was disappointing but I am grateful and happy that I can receive this chemo and KNOW that it will kill the last of that loser, Dave. Rhabdo is very prone to recurrence so let this be my only recurrence.

Because we don’t know when chemo will finish, we decided to postpone our wedding until June, 2016. This makes me cry just thinking about it but I know it is the right thing. Me, who has never met a wedding event I didn’t like, was not having fun planning my own. Dave WILL NOT steal our wedding the way we want it. No, sir. Hell nah. Bye, Felicia. Bitch, please!  Never. Thank you and good bye.

My doctor said he could have me feeling “good” for the wedding but I want to be able to fully celebrate and enjoy being healthy. Besides, Kyle and I have some seriously sassy dance moves that we have been working on and in June, they can be properly showcased.

Chemo round nine started today, April 6th and I am ready. Previously, my marrow had shown signs of being slightly “tired” from the truckload of chemo that I received in the past nine months. Please send me some positive energy and say some prayers that my marrow is able to bounce back and stay strong. I am researching and trying some alternative therapies to help my beauteous marrow along.

I am at peace with the highs and lows of the journey and no matter how long it takes, I WILL WIN. I know this to be true. I may get scared some times, but I know everything will be ok. I had this gut feeling in my initial meeting with my oncologist and I will NEVER let go of that.

I will survive.

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( my new bracelets from Mantra band)