TO 2018!!!
Guess I am proving stats, myself, and doctors (back in the fall) a little wrong. I thought I would be dead by now. I know that sounds morbid, but I have watched people - who had better health than me, been on less treatment than me, & statistically should be alive now - die in the last four weeks. Breast Cancer metastasis is a tricky demon. It hits you out of nowhere and there is noway of knowing if you will see tomorrow or not even if your chemo is going well or you only had 1 line out of multiple potential lines of treatment & you do not live beyond treatment 1. I feel selfish for asking for more days on Earth, when I watch my friends & cancer sisters die. My three of my closest mets sisters died this year and it hit me hard, just like in 2015 when I lost Aunt Kerry, Uncle Hank and Sheryl. I lost Aziza, MaryAnne, and Hayley and there is no good reason why they should not be here today breathing and living life to the fullest like all three of them did. Trust me I could list so many more online friends who shone in the sun more than I think I do and I feel they had more to give earth than I do (see the depression in me talks too much). Not one of them suffered from clinical depression like I do, they were happy like genuinely happy. I know what that is with therapy and medication, I wish I could be happy without help. MaryAnne did so much advocacy work it makes my little blog and administration of an Online support group pale in comparison. Aziza would never be scared to travel no matter how sick she was she walked around Europe and would host amazing large dinners when she was at her sickest. I spend my time watching Netflix and walking Target and reading books and avoiding hosting large dinners without recruiting the help of other people and slowly vanishing away out of the spotlight. Hayley would go out and have a blast and be out dancing with cancer. I live in cute leggings outfits and spend my nights watching movies and dancing into my bed to read a good book or comic. I ask God why did they go and why is boring NJ-born me, who felt like these three friends made me shine more, is alive and why are they gone. All I know is that they each encouraged me to BE MORE. I am shy, I prefer a book to a party, and I love to travel, but I do not plan any trips because I am literally afraid of my cancer. They would always have something profound to say when I would whine and try to retreat into my self created hermit hole. Maybe its time for this to change? Maybe I start living like my three friends or try to a little more each day...I think this sounds like a good idea even if its forcing myself to admit to my internet community how normal and boring I am yet I am alive.
Because of all the death I saw at work with addicted and/or depressed clients AND with my cancer network, my faith in God was shaky. I did not get why I was blessed with life nor did I understand what my purpose was on Earth and felt like I had no purpose of being here. God sent me some great friends & family who helped renew my faith in my Higher Power. I believe there is one God and he has a party with Jesus Buddha and Muhammad and he sends angels to us daily. Generally I am Christian, but I seriously think when I die I will come back as an angel, cat or newborn baby. I guess thats where I stood and I read Christian Bible verses for moments I spend with my higher power. Its what I felt more connected to just my idea of heaven is not the same as Jesus' heaven... I imagine him sending me back as an angel, cat or baby to help someone or help a bunch of someones. So because my friends and family kept praying for me in their various faiths, I had hope that prayer worked. I saw that I was given two chances to climb out of ICUs and regain great physical health. Most recently it took time and that required so much faith that Jesus and angels were with me daily helping me walk my purpose or my life path. This is where my renewed faith in God comes in. I thank God for giving me today. I am blessed for the tomorrows he has given me. I am thankful he has given me a voice to share my story in my blog, in an amazing online support group, and if I am lucky to meet you in person, I can hug you and we can both share our stories over a meal or coffee. I wish I could meet all my metastatic sisters and their families and give them a big hug because this disease sucks and none of us deserve to have to cope with it. Seriously, wanna meet? Lets hang because literally I am spending my time with my cat, decorating my home, cooking and reading books. I HAVE PLENTY OF FREE TIME TO HUG MY FRIENDS, FAMILY AND CANCER SISTERS TO HAVE A GOOD CRY OR LAUGH.
Some treatment updates are that I am still on Ixempra and Xeloda. I had my most recent chemo on 1/2 and my tumor markers were dropping, liver enzymes dropping & normalizing, and other important body functions are normalizing (lower C02 in my blood, higher protein in my blood ETC.). What this means is that as far as I know medically through lab-work and an ultrasound on 1/4 that showed no more ascites in my abdomen is that I am doing better than I was when I last blogged. I am also down to breathing 1L of oxygen, which is only 4% more than room air. My abdomen is shrinking, but its not flat and it upsets me still because it makes wearing clothes a challenge. I love fashion and winter fashion is my favorite and I cannot wear anything fitted unless its a hoodie with a pocket (somehow the giant pocket hides my petite bump). The bump is clearly the cancer in my abdomen wall and my abdomen was also so large and distended for four months that it may take a bit for those muscles to flatten out.
Honestly, I have had a large history of body issues, so I cry about this anytime someone brings it up. I cannot shut down the tears, I just imagine myself looking pregnant with a body that will never and can never get pregnant. Its quite depressing if you put yourself in those shoes, so I try to stay out of those stinky shoes and look at what I do have to increase my body self-confidence. So I repeat to myself the things I like about myself and also things I could change to feel pretty for the day, like getting dressed out of pajamas into a cute outfit even if its for one hour. Or I think about how the lymphedema re-normalized in my left arm, my feet are no longer swollen, my nails somehow can withstand chemo & I can get mani and pedis due to normal white blood cells. I also have a pixie cut of hair that desperately needs a trim, cut , and dye because SRS bleached my hair that grew back into patches of light brown & blonde straight coarse spots. My hair is quite funny, curly and soft and dark where no radiation was and brillo pad blondish where radiation was. Its going to be a trend or something OR I am just going to have someone who does hair dye my damn hair soon. In the meantime, hats and wigs with some awesome earrings do the trick in making me feel pretty for a day. If that doesn't work I think of all the gifts God has brought me in regards to medical care, friends & family, empathy, and a good sense of humor
I would like to say that I am blessed to be breathing and living and beat ascites back & also kept a normal, healthy liver while all of this was going down. Most of my friends have died in this situation. I keep praying to God and keep thanking him so I can share my story to raise hope in newly diagnosed and even people diagnosed eons ago who aren't doing well today HOPE. There is Hope anywhere, hope for less pain, hope for another tomorrow, and hope for a new treatment approved by the FDA or a new clinical trial. FIND HOPE SOMEWHERE AND GRASP ONTO IT AND HAVE FAITH THAT WHATEVER YOU BELIEVE IN WILL GET YOU THERE IF YOU KEEP THAT HOPE. I thank God daily for giving me a miracle with reusing a chemo, Xeloda, that got me to NEAD for a month and Ixempra, which got me conscious and off of a ventilator in September. I am thankful for an oncologist who thought to give this a shot, when every other doctor I spoke with said it would not work given my history of failing every chemo I was given since April 2017. I am thankful for a Physical Therapist who has helped strengthen my lungs and he keeps me imagining myself back on the Rock Climbing Wall and back Hiking in Hartshorne Woods (my favorite local hiking spot). I also have a Pulmonologist who believed I could get that traech out and come off of Oxygen (this may happen this coming week!!!!!).
Some more treatment updates are that I will see my Pulmonologist and Oncologist in NYC this coming week. My appointments on 1/4 were delayed due to the huge snowstorm we had. I see my Pulmonologist to possibly remove the PleurX drain from my lung because its draining under 100cc for the week total. I am also going to get tested to see if I can come off of Oxygen in the daytime and just use it for sleep. I see my Oncologist in NYC for my Xgeva shot and for a physical and to continue to discuss my lack of receiving SRS from Cornell.
Also, I have not had brain radiation 1mo after I was given a simulation and MRI to have SRS done at Cornell. I am pretty angry with them, so if we do hang out, I could vent about this for hours and then ask God to forgive me for being so nasty about the situation. I GET ANGRY AND THIS IS THE SHORT REASON WHY - They made 4 attempts to have my insurance cover it and the only way I found out was calling and pestering them. No one on my treatment team called my Oncologist about this because Sloan Kettering could have helped faster either via a trial or by doing the insurance authorization for the SRS since they are a Center of Excellence for Cancer, most insurances are required to cover treatment at those facilities regardless what is standard of care. So how do I KNOW that?? My oncologist at Sloan (she previously worked for Cornell) contacted a colleague at Sloan Kettering (MSKCC), Dr. Kathryn Beal, and I was able to see her in three days. I had to get a new MRI, which showed no growth since December (YAY!). I was called the next day and MSKCC already was contacting a trial company if I am eligible for the trial and also called my insurance for authorization for SRS. The radiation oncology team also contacted me to let me know this ASAP I did not have to call and email a bunch of people to get answers about my "potential" treatment. At that point I was tired of calling and emailing Cornell about radiation cost and scheduling that I was either going to explode on them or I had to stop calling and let it go. I chose to let Cornell Radiology go. Literally letting them Go. Any radiation or chemotherapy I have will be done at Sloan Kettering unless my Oncologist wants me to go elsewhere. I will follow this woman anywhere, she saved my life multiple times and is keeping me alive.
Back to the Brain Radiation update, they want to radiate 10 spots with SRS and told me I have 9 more spots that are not growing and Xeloda could be working on them. As of right now I am just hoping my insurance caves and says yes to the SRS & stops dragging me through the mud. The second option is that I get in this trial Dr. Beal may be able to get me into at MSKCC. The final option is we pay cash at Sloan and then submit the bill to my insurance company and hope for reimbursement of wha will be thousands of dollars.
Regardless of what happens I want to change all my oncological care to MSKCC, because Cornell radiation poorly handled following up on me about giving me the recommendation for Optivo, left it in my oncologists hands, and then I was hospitalized and left to become a vegetable with no follow up. What cracks me up is that they recommended Optivo again forgetting or not even listening to what happened to me in September when I saw my radiation oncologist in December.... it pisses me off and I do not have time for being angry at a treatment provider with my cancer care. I am also sooo done talking about this, so this is it about radiation and Cornell and Optivo and feeling like I was being forgotten at Cornell Radiation Oncology.
I will post a brief update later this week after I see my doctors this week & after I find out more about the brain radiation. I have chemo on the 22nd and I am holding onto hope that my treatments are still working and the cancer is not bubbling against the chemo and trying to grow again. I just want some good news in our life that lasts longer than a few weeks, we have had a hard year beyond our wedding and honeymoon. I would like to enjoy a trip where my cancer is not limiting me or knowing my cancer is growing & I have to start a new chemo the following week. I want to see our first honeymoon on April 1 and give Kyle something paper lol. I also am dreaming for one more summer where I actually can enjoy the outside, because my lungs are functioning and get a freckly tan and swim in the ocean water. I spent this last summer I indoors or on my deck at least 75% of the time, because I could not breath the humid air and I was unable to carry or walk long due to having pneumonia for a month and then having a decline in lung function from July to August. I would like to drive our new leased car we will be getting for more than a week. Crap I want to be cleared to drive. I hate not being independent. I pray for this every night. I figure if I wake up tomorrow, its one more day closer to a beach vacation with Kyle, one more day towards my independence, one more day closer to our anniversary with paper gifts and a newly baked cake top from our wedding baker, being my mom's maid of honor at her wedding, & what I am still doubting I will see is one more day closer to a summer, a REAL summer at the shore.
