TODAY I WANT TO HONOR THE WOMEN I LOST TO CANCER

I woke up today reading a post from one of my friend's MBC advocacy sites, which stated that 113 women die of breast cancer daily & that 30% of early stage breast cancers will recur as metastasis (stage 4 - terminal cancer).

I miss my sister-friends who have passed from terminal breast cancer, most were under 40.
I miss my aunt who passed from terminal ovarian cancer. 70% of women with early stage ovarian cancer will recur and 14,080 women will die in 2017 from Ovarian Cancer.

I have lost so many amazing women gone because of a unrelenting evil disease, cancer, which on some days it makes me sad. I have less friends to call about cancer and less friends who "get it." It has become incredibly hard to get close to any new people with cancer, but I am sure each one of you would tell me that by closing myself off from other cancer sisters, I may miss the opportunity to have another friend that will enlighten my life & hopefully I will do the same to theirs.

I have learned so much from each any every one of them I hold dear to my heart. 
 ~ I miss Aziza.  I love you my Breastie - you know best friends with breast cancer, we all came together a group of 6 of us who text daily and will be friends forever. You taught me to let go and have fun. You were my fitness sister before and after our cancer spread. You taught me to not give up on what I love to do despite having Stage 4 cancer - so I traveled with you & with my family and friends, I kept working out within my limits, I kept working until I could not provide my clients the care I felt they deserved, and I got aquainted with cooking, small art projects, and the various new crafty hobbies you can drown yourself in at Michaels (for you it was candles, soap and jewelry making, for me it was art, crochet, and home decorating. You taught me to stand up for myself, to be eloquent when expressing my opinions, and for living life despite what the stats say. I wanted to call you everyday, I miss you and your infectious laugh. I am so glad our Breasties gave me a matching necklace that represents us and your angel wings watching over us.I could go on and on, but I will just end up a puddle of tears & I know you would not want me wasting a good day crying. I wish I could have seen you this past winter, but my health got in the way, I know you & Jon understood that, but I truly just wanted to laugh with you in person. Thank you for bringing your Breasties into your wedding and having us meet all your family & friends. You truly have so many genuine people who love you and still love you to this very second and beyond.

 ~ I miss Maryanne. I miss my chemo mother, my nighttime chatting buddy, my friend who hoped for research and cutting edge treatment, and to make medical changes anytime I do not feel comfortable and to never settle. She inspired us to choose where we went for my honeymoon, inspired me to change oncologists in 2015 when my first doctor & I were no longer a good fit, and she inspired me to advocate for our disease (well as much as I could through writing my blog, writing for LBBC, or taking interviews for various MBC websites.

 ~ I miss talking makeup and animals and our significant others with Kim. I miss her sending me pictures of her animals and her having fun at baseball games with Alex. I am glad she had me meet Alex online. He is an amazing guy & Kyle and I hope to make our trip to California to visit him & also see Aziza's husband Jon. Everyday, I look at the bracelet she made me with my all time favorite hockey team the Rangers. I think of how thoughtful and caring you were and how excited you were to send me that surprise. You loved sending little gifts. You loved your pink shoes and leggings that you would wear to chemo. You were never angry at the pink ribbon, you felt it was part of our sisterhood. Also I will never forget how gorgeous you look in 2017's Haus of Volta calendar, you radiated with your pink hair and that adorable teal dress. I wish I could have made the trip to do the shoot with you, but I think your beauty with your VW Bug is perfect in that picture (it represents so much about you that made you special). I wish we got to meet in person, but you were taken too young.

~ I miss Gi. I miss talking to her all night. I miss reminiscing with her about the 2000s and the crazy things we did and how if we met back then we would be friends in real life before cancer. I am so glad I found you in a random health group on Facebook and connected you with the MBC community. You called me your guardian angel and now you are mine. I keep the silver angel up in my bedroom to remind me of you and our faith. I use the notebook you gave me to take medical notes so I have you there with me on difficult days. I miss laughing with her & holding up hope with her. I miss her tough language, which always got her point across and would make me laugh & make me happy that she didn't judge me for my garbage mouth. I wish we got to meet in person, but you were taken too young.

~ I miss Adrienne. I miss the woman who taught me to throw a hail Mary with my treatment and to never give up on trials. I miss talking medications with her and she always was so ahead of the current awareness, she always was looking for the best and better ways to kill our cancer. I miss how beautiful she was inside and out. I always felt like you were just so smart and knew so much about the trials and you helped me become more of an advocate for trials for myself and not get scared to take the risk to go outside the box.

~ I miss Sheryl. I miss laughing with her. I wish I knew her longer. I miss talking our social work journeys together. She told me to be aware of how I feel physically always and to not ignore symptoms. She told me she would haunt me if I forgot that, she did. I truly believe Sheryl's angel was with me when I was fading in & out before they found the brain tumor in the ER. She also brought her wonder mother into my world, she is an amazing woman and is so encouraging & does so much for Sheryl's Grant at Rutgers for the MSW program and also for BRCA education. I am glad she gave me your bracelet that I can wear on days I need you the most Sheryl, to remind myself of you.

~I miss my Aunt, my godmother and one of my first friends on Earth. I have just begun to process the loss of my aunt and she has almost been gone for 2years. I did not want to talk in detail about it and if I began to cry when I started to talk about it or when people asked me about her, I would change the subject or shut down. I think it is time to start talking about her on my blog to help me with the grief process. I miss calling her after a horrible oncology day. I miss having a family member who got what it was like to live with terminal cancer. I miss knowing that she was there for my mother as a best friend & support to help my mom deal with my cancer. She encouraged us to go to big cancer centers for second opinions. She also helped me find humor in the doctors appointments and surgeries & showed me how to walk out of even the most crappiest situations with a smile. She was always busy doing something, which amazed me because she was ALWAYS on chemotherapy as there are no other options with terminal Ovarian Cancer. She would always encourage me to watch some new show and I would then get hooked on it. She inspired me to start planting my own flowers & this summer is the first time since her passing that I planted flowers, it was too hard for me to plant a hibiscus or any plant with you not around. I miss living with her. I just remember how kind she and my uncle were (are) and let me live with them after graduate school to shorten the commute to my first job as a licensed social worker. She had me riding my bike all summer around the beach, going on little adventures with her and my uncle so I would not do what I normally do, and getting me and Kyle to love Ocean City MD as much as you did. I have not been back to Ocean City MD or Wildwood since we lost you, but I told myself I will go back and do something you would have loved to do down there. I did not forget Greg, I promised you I would never forget my uncle. I am glad the last time I saw you, I was able to crawl into that hospital bed and hug you. I wish I could have taken the pain from you. I am glad you are no longer in pain. I am glad you taught me to be strong despite how sad, angry, and scared this disease can make me. You taught me to keep my head held up high despite what my cancer did, what treatment I was on, or how bad I may feel. Thank you for helping me and my mother learn to find at least 1 positive thing about bad cancer news, my mom continues to help me find that positive, which helped so much over this last year of not ideal medical news & new and scary medical procedures. I love you. You were totally there at my wedding like Uncle Greg said, but I know you are with him daily and do not leave his side. <3

I have lost so many other women I have connected with in the online cancer support groups I partake in and also have met at Cancer conferences. The ladies I wrote about today are the most significant friends I have lost from 8/2015 - 5/2017. These loses have not been easy, but I am grateful for my friends, my husband, and my family for being there to talk to when you all moved onto your next phase of existence. I am grateful that you all have connected me to new ideas, new people, and new experiences. I hate that cancer took you from us, but cancer will never take what you have helped give me in return.

I hope one day someone may say the same thing about me. I hope I am helping others and not being selfish. I just want to inspire someone to be strong to do their best and to hope, but I am not sure if I have made that impact on anyone yet.

Where did Caitlin Go Again?

Do not worry, I am alive. I just have been trying to spend less time on social media and on my laptop and more time reading and trying to stay busy in the house or outside the home with family & friends. Just some brief updates before I go on a long tirade about my medical issues. 1. On 7/29, I hit my 4yr meta-versary with metastatic breast cancer. 2. On 7/30, I hit my 7yr anniversary since finding the original breast lump. 3. I am moving into my 8th year of living with cancer and being on some sort of cancer treatment. 4. I started my 10th line of treatment on 7/28 and I just want some cancer to go away for a period of time. THIS IS THE SCARIEST MOST DEPRESSING PART IS THAT I AM JUST GETTING MORE CANCER EVERY MONTH SINCE 7/2016. 5. My medical oncologist is moving to Memorial Sloan Kettering in NYC and CT. I will be transferring my medical oncology care with her at Memorial Sloan Kettering in NYC, which also allows me to get my scans. If I do get some regression or stability on my current treatment, I can get my second dose of treatment in NJ (10min from our home) to save us the trip into NYC. 6. My radiation oncology & neurology team will remain at Cornell since they are the best & I trust them. So ONTO the medical changes that have happened in the last 30days.

Let's start with how things have been since my last post. I have more energy since kicking down pneumonia's butt while on chemo with stage 4 cancer. I had two more rounds of Navelbine in June & July and my tumor markers continued to rise. I also had my scheduled follow-up Brain MRI on 7/3 to check on the tumors that were radiated in April. Changes in my medical care will also happen, which will be bitter sweet. Since the tumor markers rose, I also went for an ASAP CT Scan on 7/18.

I will start with how Brain MRI went. I went to get my Brain MRI on 7/3, which was supposed to be reviewed that same day but both my Neurosurgeon and Radiation Oncologist were out on vacation, but I was scheduled to see both of them on 7/10 along with my Oncologist. It was a big day of lots of doctors. On 7/10, I saw my Neurosurgeon first that following Monday and learned good & bad things. GOOD NEWS was that my Brain MRI showed that all the spots that were radiated are either not visible or shrinking. Also the tumor bed from my Craniotomy continues to be without cancer. BAD NEWS is that there was a 1cm new tumor that was in my left Temporal Gyrus and had slight edema, so I had to go on a low dose of steroids and get myself prepared for more radiation. The more bad news was that when the bigger tumors vanished from Stereotactic Radiotherapy Surgery (SRS using Cyber Knife), they found 10 super tiny spots that apparently have been there since November. I was really pissed, but they did explain that my brain was shifted right, swollen, and had many 1cm tumors that were literally in clusters of 3-4 tumors that created significant edema which were hard to see in the November MRI but were a teeny tiny bit more present in January's MRI when my Neurosurgeon reviewed my past MRIs. My Neurosurgeon said I have 4 options ~ 1. Whole Brain Radiation (WBR) while I am on chemotherapy, on my off week from Chemotherapy. 2. More SRS at least to the new tumor with edema & possibly more to the tiny ones if my Radiation Oncologist felt it would be possible. 3. Change my chemotherapy or go on a trial for Brain Mets. 4. Do nothing and stay on my chemo. My doctor said that at the end of the day its my choice, but he is going to conference in my Radiation Oncologist and Medical Oncologist to come up with the best plan for me. I like how Dr. Ramakrishna lays out all options even the most ridiculous - "do nothing". I am never going to opt for "doing nothing," but he is fully aware some people do make that choice. I was more upset having to hear WBR as an option again, BUT I know that at the end of the day this decision would probably be one that I may not get the option to say NO to knowing how my Radiation and Medical Oncologist work when they feel things are urgent. My Neurosurgeon said things are not urgent, but he also did not read my body CTs and if he did its not his area of expertise but my Oncologists.

Off we went to my Radiation Oncologist and I was trying my best not to fixate or cry about potentially needing WBR as being my only option. It scares the ever living crap out of me and you only get one shot at WBR...so if it comes back worse, you are up shits creek without at paddle. Well apparently WBR was off the table and my team of three doctors said that I will NOT have WBR. My Radiation Oncologist wanted to do SRS on the 1cm spot, keep a super close eye on those 10 tiny spots which we may target with SRS (Cyber Knife, what I have been doing) or Gamma Knife (SRS but you can get a bunch of spots in one day literally up to 30 depending on who is doing the radiation), but she believed that we may be able to avoid more radiation in the near future if we go outside the box with my systemic (medical oncology) treatment. My Radiation Oncologist said "You are getting SRS again for 1 session and you are going on Opdivo."

This is where the WHY questions start to flow in. My Radiation Oncologist also made me promise this past November that while I am under her care if she tells me I have to do something I do it, but can ask any questions. I agreed to that, so technically that is literally part of our doctor-patient verbal agreement. I also know she is super smart and would not put me in harms way...she is the doctor who sat with me, held my hand in a CT scan, and hugged me after I was scared from my first mask fitting.

Anyways, so I started to ask why Opdivo, which is a immunotherapy and is not FDA approved for breast cancer, yet. (I am going to post a link about my Radiation Oncologist's research in immunotherapy and radiation, but I will try to explain what she told me first.) My doctor said that her first reason is that people who have had radiotherapy where the tumor is still active but maybe stable or just radiated respond better to immunotherapy and have a longer life span than people who had 0 history of any radiotherapy. I have had a lot of radiotherapy, I am the female Mr. Burns, so I would be an ideal candidate to receive Opdivo versus someone who has only had a history of using chemotherapy in a Metastatic/Stage 4 setting.

I asked why Opdivo and not any other immunotherapy trials with radiation & the two she would recommend one has WBR and she feels I am "not there yet" and another trial she does not feel works with the blood brain barrier as well as Opdivo. My doctor said that Opdivo seems to cross the Blood Brain Barrier better than Keytruda, but they are similar drugs as they work similarly but one crosses into the Brain better. I said OK. I agreed to go on Opdivo and to the SRS & she reported that my oncologist was fully aware of this and is on board and I can discuss with her later that day at my Oncology/Chemotherapy appointment.

READ THIS Article (within hyperlink) its the SUPER SMART REASON WHY SHE WANTS ME TO DO THIS: 

I left the radiation oncology appointment feeling a bit of relief that I am able to do more SRS, but scared because I knew of no one who was on Opdivo and the people I did know on immunotherapy had no history of radiation in a metastatic setting or they were on Keytruda. I literally was becoming a case study based on results seen in my radiation oncologist's clinical trials that she has been doing for years. 

Off I went to meet with my Medical Oncologist, who never works Mondays in the office & honestly I was surprised she was able to make the time to see me (I was her only patient scheduled in the office that day). This is why she is awesome, she makes time when her patients truly need it. My medical oncologist and I discussed adding Opdivo which she was on board with, but most likely my insurance will deny it and we will have to apply for Patient Assistance Access through Bristol Myers Squibb to get me Opdivo, but she will have her staff work on it. Opdivo or any immunotherapy also tends to respond in people with multiple cancer related mutations in their DNA. Lucky for me I have about 15 if you combine both Foundation Medicine reports and the DNA analysis from Cornell that was done. Apparently the more screwed up your cancer is, the better chance you have at responding to immunotherapy. This made me feel less scared, I had my Radiation Oncologist's research behind me and I also have a mutated Cancer that just may need immunotherapy to kill it down. 

Long story short, my tumor markers did rise & I was sent for a CT scan the following week after I had Navelbine. The CT showed progression in my peritoneal lining (abdomen lining) and a little bit of growth in my pleural lining. Good news is Lungs are not affected and Liver tumors did not grow nor did the lymph nodes at my clavicle. The progression in my abdomen is quite scary and odd. I also have not been affected by it at all, which is also odd. I also have no ascites, which is odd and usually does happen when someone has cancer in the abdominal lining. My cancer goes places most breast cancers do not go and I seriously have ER+ Invasive Ductal Breast Cancer, which usually is slow growing and goes to the standard places - bone, liver, and lung.  

Since I had progression on Navelbine, we decided to move forward with the Opdivo alone (not with Yervoy) based on my Radiation Oncologist's suggestion and her awareness of how immunotherapy works & my doctors experience working with both in the clinical/research setting. My insurance did deny the Opdivo because it is not FDA approved for Breast Cancer. With the help of my doctors' staff, I got approval for Opdivo from Bristol Myers Squibb to get my medication for free. 

I had my first dose of Opdivo on 7/28. My doctor is on vacation for 3 weeks, so my nurse practitioner and another oncologist (who has worked with Opdivo for years) did my physical before I get immunotherapy for the first time & they also answered all our questions about the medication. Granted I was still nervous, but they calmed my worries. Off I went to get IMMUNOTHERAPY, which is something I kept hoping that maybe one day I would get and it would work on my cancer. 

What is Opdivo? Check out this video to learn about Opdivo. 

Opdivo is given every other week via IV for 1 hour. It does not have any premedication. You do get your blood drawn weekly and we have to watch my thyroid levels. Opdivo can affect the thyroid and I already have hypothyroidism. The side effects from Opdivo I was told are "tolerable and you mostly will have fatigue, joint and bone pain, and possible constipation." 

How has my experience been with Opdivo this weekend? I have had hot flashes and chills on and off, which is quite unpleasant because I will need an ice pack to cool me off and a heating pad to warm me up. I am not 100% sure if my fatigue is the same it was pre-immunotherapy, but I have minimal motivation to do much beyond basic chores. I also do not want to leave the house, have 0 motivation to cook, and I feel like showering is an effort. This "fatigue" could clearly be situational depression because of EVERYTHING that has happened with my health over the last year. I am not sure if it started the day after I got Opdivo or if it was progressing to this level of fatigue. I should ask Kyle later... Opdivo does cause horrible Joint & Bone pain, which improves if you are moving, but seriously I cannot be walking laps around my house all day without needing to rest. Although while moving I feel none of the pain, the pain does get worse after moving because now my muscles are tight. So far those are the only side-effects I have had thus far. 

I have no idea Opdivo is working on my cancer yet. I will not know until I have been on this therapy for at least three months as it causes an inflammation response at first (which affects tumor markers) and then you see a response. That is a longish time to wait to see if something is working when you have a lot of cancer, but my only options were throw more chemotherapy at me, because no trials could accept me due to having active untreated brain mets. Right now, I am just hanging on with a rope of hope and trying not to think about how my last two chemotherapies stopped working or did not work at all within 9weeks. I am trying to focus on the positives that my doctors told me about Opdivo and my individual situation with Breast Cancer. I am trying to remember the documentary VICE did in 2014 about immunotherapy and cancer & I never expected for it to be given to solid tumor patients or people who did not have a PD-1 or PD-L1 gene... apparently THAT gene does not matter much. 

Off I go into uncharted territory with three tumors in my small abdomen that I cannot feel and no one else can feel, with lungs floating in a little pleural fluid, yet none of the airways are obstructed (thank god), and with a brain that hides tumors. I need something to work to give me a "long run", which is what my medical team said. They said that we will go outside the box and give me something they have seen give the people with the worst prognosis a long run. I want a long run and I hope & pray nightly that maybe just maybe Opdivo will be the one.