Tuesday, November 7, 2017

CT Scans Came & Left a Wake of Sadness

   I had the results of my CT scans read to me last Monday (the 30th) at chemo. MSK compared the CT from the ER to theirs which apparently is a "rough comparison" due to the ER not using Barium and MSK using standard Barium. All CTs of the Abdomen I get use Barium and the ER was such a mess with doctors leaving their shifts and not finishing my scans, I never got Barium and ascites were missed on my CT at the hospital. Due to the tumors in my Abdominal Lining and constipation from being on pain medication, barely moving, and bed bound... the Ascites remained in hiding. The ICU attending finally listened to me and drained my belly twice, but no one thought I would need a drain there. The theory was that my Right Pleural Drain would drain my stomach. This theory was wrong as proven by my CT scans.
   The CT scans proved I had ascites and I was being set up for a 3rd Paracentesis at Riverview Medical through Sloan, but this time a drain was going to be placed. I have walked around with an EGG shaped stomach for 60days. I was told to gain weight and it would dissipate, I did. The EGG remained. I was told to eat 75-90g of protein a day due to being insufficient in protein which is why I was also retaining fluid in my feet and lymphedema arm. I have been and my protein has not improved on labs. My labwork is pretty much perfect. My alkaline phosphate is elevated by a lot, but that does not point to any organ failure or something we do not know - Cancer is in my abdomen and on my liver. That number and my tumor markers doubled in-between my 2 outpatient chemos in October. My scans also showed slight growth of the abdominal tumors.
  What do you do when there is slight progression? My doctor usually changes chemos. This time we are adding the chemo pill, Xeloda 1,000mg a day for 14days on, 1 week off, to my every three week schedule of Ixempra. She wants to do two rounds and then rescan me.
   What is the plan after that? Usually my doctor has one, but right now she thinks I am too sick for a trial. Need to get stronger. She is not sure if there is something she has not tried that I have not had a similar drug to in the past. This is wonderful (sarcasm). Not giving up on me, but running out of options she can think of. This is when I say "F that" and ask for second opinions, I ask my friends on Facebook. I ended up getting into MD-Anderson Cooper to see Dr. Grana thanks to LBBC for calling them for me and helping us see her. We also will be see Dr. Kalinsky at NYP-Columbia, who runs a lot of clinical trials at that sister hospital to NYP-Cornell. Odds are, they have nothing I do not know already.
  I know I have had multiple lines of chemotherapy, which limits trials. I have used every anti-hormonal. I have even gone on off label drugs, which failed to work and resulted in rapid progression of my disease. I know my family was told in September that I would not leave the hospital and to get my affairs in order, but I left and I am here. I no longer look like a starvation child. I look like a well fed pregnant with cancer woman. I was told by my doctor that in no way she is giving up on me, but I need to actually start to think about the day where I am going to be off treatment and made comfortable. The word hospice has been said in my presence. Lets just say things look good on one end and bad at the next end and I am a teeter totter either getting a hopeful recovery or going on Hospice and possibly not seeing my 1st wedding anniversary in April or even seeing 2018 with sound mind.
  Why am I writing this? Because no blogger does. Some do, but a lot of us do not even want to think that we could be facing the end. I have hope in second opinions. My oxygen and trach prevent me from going far to get them. I would love to go to Dana Farber, but that trip would be huge in winter with a girl who needs oxygen and her trach is still within her.
  The trach might be able to come out, when I do not know, before Thanksgiving like I hoped, probably not. We are waiting on getting a night nurse to monitor me for a few weeks off my two hours of sleep I use the manual ventilator and not just me and my oxygen. Kyle nor our parents are medical professionals and we tried it and all got freaked out. We turned to insurance and are waiting for those steps to get put into place. This really is a bunch of paperwork that needs to get send by my Pulmonologist to my Insurance Case Manager, who said last week she will start the ball on that now.
  I want to call two more hospitals for second opinions. I know we called NYU and I have to email a friend who knows someone at Dana Farber. NYU said they will call when they get my records from Sloan and Cornell. I have to email my friend about Dana Farber (reminder send email now).
  I do not want to accept "comfortability" if I have not given my all to get stronger. I am stronger. I can walk up the stairs easy peasy even after the Pleurodesis I had yesterday. I eat food that will make me gain the weight my doctors ask me to, so I can withstand treatments. I go to every VNA appointment and do whatever they ask... If it will get me better I will do it.
    I am not going to give up because of this EGG shape my (great muscular) body has formed into. I will give up when I know I have searched high and low for the answers to make me better and there is nothing nowhere nada zip. Then I am ok with going into that nothingness...nowhere, blackness, zip. For today, I choose light, life, and love.

Sunday, October 22, 2017

Hard Road Ahead

I have been home 22 full days. That is almost a month of being home and unable to talk to anyone for too long and it has driven my mind up the wall and back. Trust me that has been no walk in the park for my parents or my husband to care for me during these few days on this long road to recovery. Yes, I have had two sessions of speech therapy at home and I have a valve I can and try to use to speak with, but some days I just don't use it. I don't use it because it takes a lot out of my lungs and I also want my voice not some breathy voice. I miss singing, or being able to sing to my cat, who has been hesitant to come near me for too long. I was gone 40days, I abandoned her and she is making it clear to me she is pissed. Not only is the cat pissed, my horrible resting bitch face (which makes me look sad and gloomy and angry) makes everyone assume I am feeling that way and I try to talk and just make these huffing noises and flap my arms around (i use my hands a lot when i speak), so yes I guess I look like I am in distress. I have learned to try and improve my face and not use my hands to speak anymore. I have been able to have short conversations with my Passimir Valve (talking valve), but it needs to be quiet and I need to be calm and distractions need to be gone, so no tv no phone.

Being home has not too bad, but the road to getting my voice back has been tough in the hospital, but only got harder in the real world when I have to put even more work in and I am faced with real life challenges that never were challenges to me as an adult, maybe as a toddler, but I am 33 and I can't walk up many steps using both legs without support. That is my reality and I spend most days doing simple workouts to build strength so I can get in and out of my house.

I shed the cane by day 7, so at home I walk. In my only public activity, which has been going to doctors, we use a wheelchair, but I have an will walk if I can. On the other hand having a wheelchair is great because I walk slow and have to have two people drag oxygen tanks and traech-gear with you everywhere. You see that TWO PEOPLE. I would not be able to get anywhere without two people. I have an entourage, someone pushes me and carries stuff for me & the other person has to carry all my medical gear. Downside to the wheelchairs is that they cause my bed sore pain. I got this awesome wound/sore in the ICU within days because my bed sucked and no staff thought to move the shrinking in size, unconscious patient. I guess they thought I was not going to make it out of there. Who knows, but I hate pain. Who likes pain?? NO ONE.

Most of these days I am alert and attentive, but I speak via notebook and hopes that you might be good at mouth reading. If you call me, I will not answer, someone from my entourage will speak for me. If you want to speak with me, which seems like the same few people have outreached me. This number gets less and less the sicker I get. I get it, my disease scares you, but imagine how if feels if you were sick and I just dipped off the face of the earth and never asked how you were doing. It would hurt, make you feel alone, and it really highlights who really is there for Kyle and myself.

All signs point to Ixempra working. These are the reasons  to get a little excited that a treatment is working and may help me get strong and back to me again. First good thing is I have Oblina Deux (my second PleurX cather) in my right lung and she has gone from draining 500mL of cancerous goo to 200mL of cancerous goo every other day. I even graduated to getting it drained twice a week. I know from the PleurX (Oblina) I had in 2015 my lung drained less fluid and the cancer melted away.  I have gone from needing 5L of oxygen to 3-3.5 L daily within 3 weeks. My recent chest x-ray on the 19th showed improvement since my last chest xray at the hospital. these changes all happened after a third dose of this chemotherapy.

Medical Updates have been good. My oncologist has moved from NYP-Cornell to Sloan Kettering and I followed her. I was too sick to make the trip into NYC to see her post surgery and she had me see an oncologist at the Sloan Kettering in my town. We also arranged to have my scans, labs, and treatments done there with this doctor & that I will go into NYC 1x/mo to see her & my Brain radiation team and/or my pulmonary doctor whom are all at NYP-Cornell. The idea was to reduce my trips into the city because I am oxygen dependent and the trips are long all day processes.

Since my last blog post, I had another dose of chemotherapy. I learned that this chemo is sneaky and gives you nasty nausea on day three/four. We hopefully will fix that by having me take Zofran for the 4 days following chemotherapy. I will let you know after the 30th (dose 4) how that goes. My oncologist said her goal is to get me fat and clear up my lungs. I have my first CT scan since the one I had in the ER this Wednesday. Please cross fingers, toes and even your eyes if you got to that the scans are good. These scans determine if I stay on Ixempra.

I also saw my Pulmonary Team and had a good report from the doctor when he saw my chest Xray and gave me an exam. I can schedule the trach removal if I am off the ventilator for 2 weeks without any problems and my CT exam this week shows improvement that was seen in the chest Xray. I was told that I need to be off of the Ventilator 100% for a few weeks before we schedule closing the trach. Right now we have been weaning me off of the vent since I got the trach in the hospital. I was able to go a full night without it once, but have been most comfortable being on it for 3hrs and sleeping the other 5. I heard that closing of the trach is possible, so my goal is to get to sleep on time and to work with Kyle and my medical team (who suggested the weaning schedule we have been using) on getting me off this vent. I hope I can do it. My lungs are weak from the years of having cancer in them and lungs do not rebuild themselves like starfish. They need time, medicine, and rest to heal. We also discussed possible removal of the pleurX drain because its draining less with each chemotherapy.

I also had the egg that grew in my belly in the ICU drained 1x outpatient. It was drained 2x in the hospital and 2.4L of ascites came out. I had it drained two weeks ago and only a tiny bit of fluid appears to return. It looks like that is resolving itself also.

I am still dealing with swollen feet, a swollen left arm, and swollen ankles. This all happened due to my lack of appropriate nutrition in the hospital and lack of movement. I met with a Nutritionist through the VNA. They helped me make sure I get enough protein and fluid, which are important for getting the fluid out of me.

I still have the VNA coming. They have been sending someone everyday since I have been home (minus a few weekends). It has been helpful to have someone help me or show me how to get stronger and help myself here at least once a day. I get the most benefit from Physical Therapy and Occupational Therapy because I want to get back to doing things on my own and having the endurance and strength to do day to day chores & get out of my home on my own no problem.

I still have Kyle here, home with me, nursing me everyday. It takes a lot out of him. His coworkers have been incredibly supportive like always and his family has also been quite helpful for both of us. We appreciate it. He told me a few friends reached out, but he does not have the energy to engage in much because he is tired and has been consumed with worrying and caring about me. THIS has taken so much out of the most amazing man on this planet it pains me. I hate seeing him tired and exhausted all at the sake of me. He loves me so much he puts everything aside. Not many men can do that but he can. I want this man back as my husband. I want to get better so he doesn't have to be my nurse or someone find us a good in home nurse to take the responsibility from him.

My parents have given up their lives to be here to clean, cook, keep me company, and help Kyle take me to and from doctors appointments. It takes a lot out of them. In no way should they have to take care of their 33yr old daughter. The situation should be reversed, but it is not and they are here doing what any good parent would do. They are helping me not go insane and helping my husband not feel like he has to do everything medically and environmentally (cleaning, cooking, laundry  etc) for me. I just started to have the energy to wash my own dishes and put them in the dishwasher. I try something small daily to add to tasks they were doing for me that I can start to do on my own. I try and I will get better with Kyle and my parent's help.

Ultimately medically I am doing well. But because I am being kept so active by the VNA and doctors and doing doing simple Physical/Occupational Therapy exercises. You might find that I am even more inattentive because I am tired, in pain, and should be resting, or enjoying myself so I HEAL. Working hard, resting, and using all the resources I am given to use to get better will help me heal. I just need Ixempra to keep kicking cancers butt so my body has the strength to keep doing this.

I want my voice & strength back. I want my husband back and retire his stint as my nurse. I want my parents to go back to enjoying their own lives. Honestly just miss singing to my cat. It brought me so much joy. I think she misses it too, but she knows mommy is sick and that is probably why she stares at me and is unsure of what to do..... or maybe its my bald head. Who knows.

More updates to come when the  CT scans come in.

Sunday, October 1, 2017

A Tracheotomy & 40 Days in an ICU after an Innocent ER Trip

Well world last we spoke I was starting Optivo. I had two rounds things were stable with scans in a few weeks. Around a week after cycle 2, I started having to use the oxygen tank I got when I had pneumonia. A day goes by wifh this and we took me to the ER. 

August 28th was the day we entered that ER. I also developed a stomach like I was birthing a baby. I knew they were ascites or the cancer in my torso lining. So we took me to the ER to hope the lungs were either the cancer, pnerumonia, hopefully not pnemonitis, or nothing. The stomach I hoped was a lot of bowel movements.

ER tells me my stomach is nothing and to follow up with my doctor. The ER did think something was wrong with my lungs and/or heart. Scans and waiting aside I was admitted to have a Broncoscope to determine what was causing my shortness of breath and my lungs were strong enough to handle this procedure. It would be a few nights in the hospital and I go home on the right treatment whether that was off Optivo, treatment for pneumonia or pneumonitis. 

40days later....I go home.

How did this happen? A basic procedure led to my lungs bleeding and I had to be intubated. A biopsy 6 doctors said to do & I almost died.

I wake up in the ICU and was told this by my family. The only way off the ventilator was my lungs are strong enough to go off intubation alone or a traecheotomy. WTF I was depressed and hooked up to a feeding tube I ripped out on a few occasions. Sad depressed exhausted all I did was sleep and hope maybe causing other issues would just end this nightmare. 

Now with lungs as weak as mine I doubted that I could come off ventilator and I did not want a traech. Honestly I wanted to die. 

I am being honest but I was alive and had two options to get home. We first got me off of the ventilator system, but my lungs absorbed too much CO2 & turned me into a nut job who now had one option-traecheotomy. 

Kyle and I discussed this. People wanted me home. I also could not live at the hospital trying chemo on a ventilator much longer. After much depression that ran so deep it hurt. I also woke up with pounds of weight loss and a defeated spirit. Goodbye normal life & hello traecheotomy. 

So now the goal for cancer was to get me off of the traech with a good chemo to get my lungs better. I can only hope that works because a life with a traech is not easy. I started Ixempra in the hospital. They did not think I would make it on chemotherapy with the state of my body. 

I survived and had two cycles of Ixempra by the time I went home with a traech and the body of a steriotypical cancer patient. 

We are finally home. I can't take care of anything but eating, drinking and doctors. 

I was discharged to a mini-nursing home and my new husband is my 24/7 nurse. Imagine not being able to walk, shower etc because you are attached to some type of life support. I also have a pleurX drain again as I was right about filing with fluid over 40 days ago.

We need help. I need help. I will be posting soon a site where people can help and with what. We will be paying for a CNA shortly because our parents & kyle are going to burn out too.

I'm not very much up for visitors now because I feel horrible about this all. I am adjusting to home. I will probably feel more at ease in ten days or so to have long visits. Right now we need to feed me, get me to doctors and out of this nightmare. 

Monday, July 31, 2017


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.

Sunday, July 30, 2017

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. 

Saturday, June 24, 2017

The Story of Sisyphus... AKA Caitlin & Cancer


     In my 7yrs of being a Cancer patient, I have felt like Sisyphus of Greek Mythology. In short, Sisyphus was forced for eternity to push a giant boulder up a Mountain only to watch it come rolling back down and hit him, forcing him to continue the pushing the boulder - being hit by a boulder for eternity. Lately I have been thinking, I am Sisyphus, but I need a flat top to form on my crappy mountain, because I am tired from pushing this boulder and my body and mind are beaten from being hit from the boulder on its way down. I keep hoping that one day my Boulder would stay on my Mountain for a little bit to give me a breather, a break, and a sense of recovery. This past week was the worst episode I had with my boulder (cancer) and mountain (my life) in a long time. I was losing faith that my mountain would ever build a ledge to give me rest and recovery and strength.

Attempt 1 at Pushing my Boulder up the Mountain: 
     Around week 2 of Pnuemonia, I was given the orders from a Pulmonary Doctor to take Mucinex, which resulted in more coughing, more phlegm, and over time I would get coughing fits and only foamy white spit would come out. The coughing would turn into fits, I couldn't breathe, I would get anxious and I would puke up foamy spit and sometimes bile and sometimes food.
   Last week (6/14), I told my doctor & she suggested to cut out the Mucinex. Despite her recommendations, I was still spitting the foamy white spit and was congested, so back goes the Mucinex. I was told to cut Mucinex down to 1x a day with my Nebulizer 1x day. Unfortunately, the coughing fits resumed, the spitting pukes started and I was not getting any relief. I honestly was sick and tired of Mucinex, Pnemonia, Coughing, Phelgm, Spitting foaming stuff, and hacking coughing puking.
    Every puke fit was due to coughing white foamy spit/phlegm, panic, and more coughing and vomit. There was a clear pattern here Coughing was irritating my stomach and it needed to stop. By this past Monday, these fits were happening once daily. I was nauseated, told my doctor/APN over email & they explained we will address it when I come in for chemotherapy on Wednesday. I was anxious that I would be denied chemotherapy because of these coughing fits, because of the nausea that now has resulted from two weeks of nonstop coughing. I also lost more weight and was anxious about getting that lecture from my doctor. All I wanted to get was my chemotherapy, my first full dose of Navelbine without Pneumonia so my immune system can focus on killing the cancer and no other pathogen.

Attempt 2 at Pushing my Boulder up the Mountain: 
 The day of chemotherapy, I had a coughing-puking fit in the morning, could not eat, was nauseated, and felt like absolute crap. I failed my doctor AGAIN by not gaining weight, because with the coughing and spitting, my food was not settling well. My mom told me my skin was grey. I knew I was dehydrated from not eating, drinking and the coughing fit
  We met with my medical team and explained all of the above. Good news is I was told that they will get control of the cough by giving me cough medication at night.  Bad news was and I was told that the constant coughing has also led to my stomach becoming irritated and I was coughing and spitting up acid. My Acid Reflux went into full speed and the Pepcid I usually take is no longer working. My doctor gave me Nexium, which should stop the coughing fits and spitting up of stomach acid, but will take 1-4 days to work, so I may not feel better for a few days. They gave me a big bag of fluid to address my dehydration, my usual and reliable pre-medication and anti-nausea Aloxi and my full dose of Navelbine. I was advised to take my Zofran & Ativan combo every 6-8hours to ward off nausea, take the cough medication (which has narcotics), and Nexium, avoid dairy, take small sips of water, and be patient with myself when eating.
  We left, I ate a little, we stocked my house up with plain foods & snacks and got me ready to bear down the hatches for probably another day pushing the "boulder" with no resolve.

Attempt 3 at Pushing my Boulder up the Mountain: 
   This is what we call the day after CHEMO. I want to reflect that for me a full dose of Navelbine is NO JOKE. IT IS NO JOKE WHEN YOU ALSO HAVE EXPLOSIVE GERD IN YOUR BELLY. DESPITE taking my medications this is how I spent my last two days.
   I woke up at 4:30a holding the porcelin god and then again some other time that morning. I took my anti-nausea medications and laid down, they kinda worked, but I was mostly nauseated due to the metalic taste in my mouth given to me by chemotherapy. I was semi-functional that day, tired from all the sedating medication, in pain because Navelbine makes the nodes on my clavicle ache at a level 8 out of 10, and nauseated from the pukes & the taste in my mouth. Otherwise I napped, I nibbled, and I felt it was a normal chemo-recovery day minus the strange puke. I kept praying that the cough medication, anti-nausea, or Nexium would save me from puking coughing fits the next day.

Attempt 4 at Pushing my Boulder up the Mountain: 
  The second day after chemo I call DAY 2 and it is  usually is the day from HELL. My first dose of  FULL Navelbine I was in the ER with Pneumonia, which was another type of hell lol. I honestly had no idea what this day would bring. It brought a big reminder of what CHEMOTHERAPY can do to anyone at anytime of treatment. The chemotherapy took me to a DAY OF HELL. I woke up with the same coughing fits, vomiting like I had the day prior. The anti-nausea medications, cough medicine and Nexium still hadn't kicked in and I started to worry it never would work.
   I spent most of my day on my couch in PJs, watching Netflix, sipping water, staring at a barely eaten box of plain animal crackers and an untouched cup of cheerios on my table. I laid there, my family worried about me and wanted to help, but honestly when someone is chemo-sick the most you can do is stare at them in pain, keep filling their water, and maybe change the channel on the TV for them. I wished that there was something someone could do to help.  There was not anything anyone could do for me. I had to ride the shit wave. A shit wave I have no ridden this badly since 2011. Only time and patience would help me. If someone did come over to help, they could only stare at me or socialized and I  had no energy to talk, host, play games or entertain another human. Honestly that would have made me feel like shit, because I did not have the energy in me to be social and I would feel bad because honestly there is not much people can do in the situation. Yes, I spent 5am - 8pm on my couch, alone, moving to the potty to the couch to the fridge for water to the couch.
   In my loneliness, if I could not distract my mind with a nap or Netflix I became scared what would all this pain mean. Would this mean the cancer is taking more of me for colonization, is my body to weak to deal with this cancer, or is the chemo working. I had no answer to these questions. I had to put them aside and let time deal with it. I had to have faith that things will get better tomorrow.

Attempt 5 at Pushing my Boulder up the Mountain: 
    Today is DAY 3, I feel human-ish. I have not coughed today at all, which is a HUGE blessing. I have no phlegmy pukes, which is a even bigger blessing. The Nexium is working! I have mild nausea, but my anti-nausea medication is affective & I am eating. I have a little more energy. I am doing what I can given the energy I do have today (which is not marathon runner energy),  but it is putting away laundry and cleaning up little messes here and there energy, writing my blog, working on my wedding thank you cards, making my bed, showering, and even making myself an easy meal. I will take these small improvements. I will take what improvements I have for today, because yesterday I was a cocoon in a blanket on my couch most of the day. Finally my struggle lightened up a bit.
   Today, the Boulder and I finally got that Ledge on The Mountain to stay put and for me to rest and get a break. How long will this break last? I do not know. No one knows what tomorrow will bring. I had no idea today I would feel better today, I just had faith that hopefully I would feel better and not worse with time.

For today I am slightly more energetic & I ate two small meals. I say thats a WIN in my day. 

Tuesday, June 6, 2017

Even Superheros Have to Rest

If you know me, like know me know me, I am slightly obsessed with both the DC and Marvel Universe. Now I always loved the stories behind some heroes... not all were blessed with powers, some got them, some worked at them and even some who are "Gods" used their powers for good.

Ok, I am not exactly sure where I am going from here. BUT I always ask for Wonder Woman gear from my parents. I guess I feel like I was her, I was strong as all hell, I always stood up for what I believed in and I always saw myself and other women as equals to men. I also had brown hair and well felt like in my life, especially when dealing with cancer, I was wonder woman. I could stand up against any fight and still come back with the same strength, minor cuts, but I healed fast. (OK now I am getting to my point).

Most women in my world with metastatic disease cannot say that for 3yrs of living with cancer they ran sprints with a Pleural Effusion or could squat 280lbs after having almost every vertebrae in my spine radiated. I was a lucky woman living with Stage 4 Cancer, the disease affected my physical capabilities minimally and I could resume and continue my super strength despite where the disease decided to go, die, or stay.  I also took 0 time off from exercise after my mastectomy, I literally was walking 2-3mi a day 4 days after surgery and was running 3-5mi 3x/week during chemotherapy during my early stage diagnosis. Crap I even have a page in my blog devoted to maintaining fitness while having surgery, chemotherapy and radiation.

This past winter & spring, I forgot that despite having Cancer and being referred to as having WONDER WOMAN STRENGTH, I may not always bounce back like Wonder Woman.  I expected to have this same recovery after my Craniotomy last winter, because I WAS WONDER WOMAN. I believed I was unstoppable. The problem with that thinking is I expected to jump right back into what I was doing before my skull was cracked open. I forgot that despite having good physical fitness through all of my cancer journey that I still had to dial back and start from the lowest or slowest point up.

A Craniotomy is a big deal and honestly the fact that I have 100% of my faculties back after that surgery is a blessing in itself. But my thoughts can be over critical and stinky and down right mean to my own self. The truth was I finally was not able to bounce back. I felt like the person I was, that Wonder Woman was fading away. The truth was that I was fatigued, I had to walk slow, I was unable to multitask, and I felt defeated, broken, no longer a superhero. Cancer was going to beat me. I know you do not want to hear me say that, but it is how I felt. Also, I had radiation to my head for the first time, which is seriously a drain on energy. Then lets add my first IV chemotherapy in almost 6yrs, which btw is a whole other level of exhaustion versus oral chemotherapies or anti-hormonals, which I had been taking for 5.5yrs. Lets top that all of with an infection in my Craniotomy wound 6 weeks later, which only made me feel more and more defeated.

After my Craniotomy, I had hope that I would be side-lined for maybe 4 weeks and get slowly back on the gym horse. Even after the second head surgery, I did not want to give up, so I literally waited the two weeks my doctors asked to workout. I walked the malls with Kyle, I set up my road bike inside, and I started doing Yoga again. I did this for about 3 weeks until the Tegaderm Tape keeping the IV in my port for my 3x/day antibiotic infusions kept melting off. I was frustrated and just really stopped doing anything but the walking as it did not make me sweat or ruin the seal around my port IV.

This is where the negative thinking crept right back in. I was slowly fading away from my hope that I could be WONDER WOMAN again. I got sad, I lost a bunch of weight and a lot of it was muscle I had built over the years. So now, I literally am 25lbs lighter than I was a year ago. I lost this weight in about 3 weeks mostly I am assuming it was due to the inability to workout, the cancer getting emotionally and physically draining, a lack of appetite due to the chemo, lack of exercise, and just my sad, stinky, hopeless thinking. I guess I got thin for my wedding without trying, but I had to get my dress taken in three times within 30days of my wedding (THAT IS NOT HEALTHY). No level of emotional distress, physical health decline, or stress should have led to that quick of a weight loss, but it happened. In the cancer world they call this, Cancer Cachexia, which is the loss of appetite due to cancer tumors release destructive proteins which tell cells to produce an inflammatory reaction which can cause a loss of appetite. These proteins can also cause muscle atrophy and can be the cause of altered taste changes,  among many other problems. 

I was broken, I was no longer Wonder Woman, but Olive Oil. Honestly my negative self-talk and view of this weight loss is enough to deal with. BUT People have been on my case about what I eat, how much I weigh, etc. Honestly, I know people care and mean well, but it has only made me more scared, more self-critical about the weight loss in general, and more hopeless that I won't ever get my fit, Wonder Woman body back. This is why it has become a problem that I saw myself as Wonder Woman. I hold myself to THAT standard of perfection constantly and honestly, I am not a person made from Zeus, I am human, I can break and sometimes I have to accept that I am also living with a terminal illness. I never accepted my disease for what it REALLY IS.

BTW NOSY PEOPLE WHO I NOW WANT TO STOP OBSESSING ABOUT MY WEIGHT - I HAVE BEEN EATING AND CANNOT GAIN MUCH WEIGHT BACK. I HAD PNEUMONIA AND 0 APPETITE WHICH IS NORMAL, BUT HONESTLY IF I AM THIN BUT HEALTHY WITH GOOD COLORING PLEASE JUST GET OFF OF ME ABOUT THIS. IT MAKES ME FEEL LIKE UTTER PILES OF DOG SHIT. I will exercise but I will do what I can, when I can and what I want to do. I eat and I honestly do not care if I am skinny now. If you care, but my doctor doesn't care as long as I am 120 (which I have been for 1mo), then maybe you need to ask yourself why it bothers you so much?

Here comes that moment when I made my own Mental Choice to accept and be and not hold myself to any standard... I made that choice in April.

Why did I decide to 1. not let my negative self talk affect me and 2. not let other people's criticism of how I look affect me... a comic. Yep another comic. I started to read the new Thor comics, where Jane (Thor's human ex) becomes Thor but also has Metastatic Breast Cancer. Here is a human, she is sick, but when she can she fights and is strong. This comic excerpt explains how I ACTUALLY HAVE BEEN LIVING SINCE 2010. And honest to god, it has helped me over come my shame for being skinny and my shame of being sick with CANCER and looking sick and ultimately that fear of never being a strong, indestructible fitness god (or whatever I thought I was). I have learned to accept that some days I need to rest, because my STRENGTH I am using all of that to take in treatment and stay alive. Some days I can be the MIGHTY old Caitlin who appears strong and is unstoppable and never needs rest. Of late, I have accepted that after that Craniotomy I have needed more days to recover and fight the Cancer within to stay alive, so I can have more days where I am Mighty Caitlin. 

So the reality is I am no superhero. I am not indestructible. I am not impervious to pain, sadness, set backs, or illnesses beyond my cancer. The reality is I am a strong person, but physically my strength is being used in other ways - to recover from this pneumonia, to fight this dumb cancer, and to accept that yoga & walking are perfectly OK forms of exercise on the days I feel capable of exercising.

The last 7 months have been tiring. A craniotomy 2x is no joke. Chemotherapy IV is no joke especially when you progressed through two different Chemotherapies in 7mo. Radiation 2x to my head was not easy. HONESTLY, most people still would not even think of gardening when recovering from pneumonia. BUT I did that because I wanted to. It tired me out. You know why??? Because I am sick. I have been sick since 2010, but it was easy to hide when my treatments were not needed to be dripped into me via a port or when I had hair and not a wig.

This is where I think my mind hurt me... I was in denial about how serious Stage 4 cancer can be. I see this in some newbies in my support group & honestly I hope they never wake up in an ICU accepting that they are sicker than they thought. I hope this blog helps all my Stage 4 sisters and even early stage sisters realize that we are sick. If we are sick, it is ok to rest, it is ok to have set backs, and it is ok to look sick.

Today's lesson is that I never accepted that I was sick and I think that was the problem. I held myself to be WONDER WOMAN. I felt if I could still do the normal, look normal, then I wasn't sick. This kept me hopeful, but in serious denial about how bad things could get for me. It did not hit me until Nov 14, 2016 waking up in NYC in an ICU that I WAS SICK WITH CANCER AND THIS WAS REAL AND SERIOUS. I can say I have lived with cancer since 2010, but the last 7mo I have finally been forced to accept, deal, and cope with what that really means.

In therapy I have learned that COPING means that: 
1. Resting is not weakness.
2. Disability is not the end, but a beginning to find something new & something that makes me happy.
3. My hair is replaceable, my life is not.
4. I will never have to worry about dieting ever... I am embracing the thin.
5. Every day is a blessing and despite how bad a day could seem, there can be 1-2 good things in that bad day. I have to force myself to find this sometimes.
6. WE CANNOT PLAN BEYOND TODAY. Planning for tomorrow is never guaranteed.
7. We CAN plan for tomorrow to have something to look forward to, but also be willing to accept that cancer or illness may get in the way of those plans.
8. Start to place less value or mental concern on things like - money, what others think, and my internal desire to be the perfect cancer patient.

trust me these are all wavering lessons and I fall out of practicing them here & there. I am not perfect. No one but Wonder Woman can be her, but damn we can look to her as hope. I am a human and some days I am unstoppable and others I am just trying to get better and not let the cancer take over me.