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?)
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.
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 ❤