Insurance Companies Made my DAY 💩 show

You would think that by the 11th dose (not round, I am almost done with the 4th round of this combo) of this chemo combination I would hit no roadblocks....

1. No premeds were ordered. I am thankful my attention was made to focus on my medication preparation and I asked why the steroids and Aloxi went in so fast...hour wait finally got premeds and crisis 1 averted

2. I have become a Medicare patient and have been lucky to experience the awesome crap show my clients always dealt with is...Perscription coverage and coverage of the 20% Medicare does not cover (bet you didn’t know that!). I paid for a new horizon medical called a medigap plan and a prescription plan called Part D of Medicare...there are like 8 parts of Medicare you could be eligible for. Regular Medicare only covers Hospitals and Doctors. Apparently an oral chemotherapy is NOT covered by my prescription plan when I was sold the plan and told all I needed was a form filled out and a preauth... Horizon had no clue what they were talking about...

Anyways so 1 of my 4 Cancer medications is a speciality drug that gets mailed to my home. I spent my whole chemo session explaining this shit show to three nurses, Caremark, my mother, my husband, Horizon and finally the person who fixed this (after the Sloan nurses contacted my doctor) was a financial rep at Sloan. After another draining call to Horizon who said that I am now officially enrolled in Medicare Part A&B, Medigap (Part C that covers 20%), & a Prescription Plan that will back date and pay for my treatment since May 1, 2018. 

So YAY right? Not yay

3. Sloan calls to tell me that this Medigap Plan and Prescription Plan do not cover my Specialty drug, but Medicare part B does cover 80% & I have to pay 2,000+ of what isn’t covered. After I was explaining that I do not have 2grand every month to spare and would have saved more if I kept Cobra until December, Sloan offered me a grant to pay for my Xeloda and will have it shipped from their pharmacy in under 12hours to my home. They said that once I get my Medigap Card they are going to resubmit the claim for this drug and try to get it covered under Chemo since that is how Part B of Medicare is apparently covering this drug

So I am tired and am probably using the worst grammar in this post. Sorry guys it’s a rush post and is too long to do a quick Facebook update.

On top of this we did laundry, groceries, small errand for my moms wedding, finally ate food and my visiting nurse came...

I did not get a nice shower until 730pm.

I did not get to relax after a day of Chemo, tears bc I felt like Horizon lied to me, and anger that sick people get screwed daily from the insurance world...I finally sat down at 8pm.

I am exhausted

I have a headache from the stress

I am grateful that this all worked out. My gram always said that and she is right. The emotional and exhausting journey to get to that “worked out” point is sometimes too hard to avoid and calm down and turn my face to god. I am just glad that my angels in heaven worked with God and had Sloan Kettering help me again.  

Anyways in good news my recent brain MRI showed 9 spots compared to 20. 8 of them have been shrinking and one is stable. No radiation and we continue the systemic therapy which continues to work on my brain. I am also off of all oxygen and my blood oxygen is back up to 96-98%. I also joined a Liverstronv Fitness program for cancer patients who need to regain strength in treatment. I started it two weeks ago and have gone four times and feel very proud of myself. Tomorrow is day 5. I have not had a body CT scan but my doctors say the labs are good and my clinical presentation continue to improve. Most likely we may scan if my labs go into the Danger ZONE or if I ask for one in June for my follow up at Sloan in NYC. 

In the meantime I will have three more doses of this chemo and two more cycles will be finished before I see my doctor again. I am praying my miracle continues to work. I just want this to be a good summer. Not like last summer when I had no energy to leave my home alone for more than an hour. Not like the summer prior where I spent the last half of it throwing up and brewing a brain tumor. I want to go in a pool. I want to get some time in the sun. I want to go to the beach. 

Ideally I would like to go into the water but .... that wound from September is still here and is finally closing it’s about 2x1cm now, but as long as it’s there I can lay out and put my legs into water. A shower shield will not withstand the Atlantic Ocean or a pool...but I want to have this thing healed. Also the belly is still shrinking. I now look like a shinny girl who likes to drink beer. It shrinks every week and my clothes finally fit better. I finally don’t look like a egg person at 98lbs with 20lbs of tumor or fluid  in my belly & body. I am finally 119lbs if real mass, look human, don’t look pregnant with dying cells and not the baby that people would and probably did assume if they didn’t see my bald ass head...crap I looked sick in Sept.

Anyways.... thank you god for the miracle of health. Thank you for making today work out in the end. Thank you for shrinking my belly. Thank you for letting me have another year of flowers sun and sand. Thank you for letting this chemo work as long as it can and extend my life as long as this cancer will allow. I know one day this will kill me. That sucks. It just sucks. I am not ready to die and God knows it. I have a few more things I would like to get done here for God and my family before I am sick  enough to go. 

A Quick Medical Update

I started Abraxane (3 weeks on, 1 off = 1 round) and completed the 1st round. I start my second round this coming Monday. I also began Avastin and will be getting my second dose on Monday. Xeloda also continues to be ingested despite the havoc it is wrecking in my poor digestive tract. I just have to say that the nausea is a 8 out of 10 on this combo & the fatigue is about a 5 out of 10. Literally I spend a lot of time praying that my antinausea regimen works & it has not curbed complete pukage. Therefore, we have to get it adjusted for my pre-medication and the medication I take at home to avoid puke. I have puked way too much since starting Abraxane with the Xeloda.

Unfortunate for my quality of life, but I want to be here a long time, so I am putting up with the side-effects and looking for treatment options for those side-effects to improve my quality of life. The reason why I will put up with this insane, but ingenius chemotherapy combination...is that I have only had good news since starting all three drugs. Here is the good news in no chronological order:

1. My 6wk brain MRI showed stability and regression. This MRI was done a week before I started the Avastin, so we just saw what Xeloda & Abraxane have done together. I won't need brain radiation & will get another f/u MRI in 8wks.

2. After 1 week of Abraxane both of my tumor markers dropped 400 & 500 puts. This puts my 3,000 something markers into the 2,500 range. I have a lot of cancer, so my labs are pretty scary. I am curious to see what my markers are this coming week.

3. I am off of Oxygen in the home & when out in public running errands or going to doctors. I still have to wear oxygen when I sleep and workout. Slowly but surely I will be off of it 100% if my lungs continue to improve with chemotherapy.

4. Everyday and its more noticeable every week but my giant ascite filled stomach has shrunken so much it can be hidden in clothes. I still am not my normal size, but I keep praying for the tumors in my abdomen shrink.

Honestly, all these changes are amazing. But I am human and there are moments each day where I start to get down about various thoughts about my cancer, which are SOOO not helpful for my mental stability. I start to get upset that I still have cancer, my abdomen is not very comfortable to deal with because of the tumors in my abdomen lining, my abdomen also is still larger than what would be normal & I feel its the last reminder of how sick I was. I just want it to go away & hate looking at it & refuse to buy any new clothes beyond sweats and baggy tops with leggings, because I want to hide in my clothes. I also am bald, which I am surprisingly OK with since its the 4th time my hair has either fallen 1/2 out or all out. THAT I CAN DEAL WITH, but on my worse days I cannot even deal with that.

So do I cope...I have to force myself to relax myself as I begin to explore the anxiety inducing ICU stay and how I looked when I first came home. Then I start to look at all the changes that have blessed our little family and I smile. I was told by a consulting doctor to get my affairs in order and that my treatments all would not work for any period of time anymore. I apparently was told I was too sick for trials and that no treatments have worked therefore none will. I left that appointment wanting to prove that person that I am not a statistic, but a person who determines where her fate lies and that her hands are in Gods and he has not given up on me yet. So I start to tell myself that it is pretty amazing & shocking that 4months ago I had a traech, a lung drain that was draining 1/2L of fluid, an abdomen filled with almost 3L of fluid, swollen legs, on oxygen, swollen feet & was unable to wear normal shoes, & I weighed so little stretch pants were baggy on me. I have since had that traech removed & the hole has healed very well. The fluids both in my lung and abdomen have resolved. My legs are no longer swollen and heavy. I am off of oxygen 2/3 of the day. My feet are no longer swollen and I can fit into my favorite boots & sneakers. I have gained at least 20lbs. I am still thin, but my arms and legs and face and butt have restored themselves into a healthier body.

I still have a decent amount of recovery I hope I get to see happen. I will do my best from my position to care for my nutrition, fitness, and mental health. I will continue to be a smart patient and will always work with my doctors on finding trials or treatments...even if that means sometimes I may have to do the search myself. My wound still needs to heal. I wish I could yell at the nursing staff who let that wound even happen, but there is no point in yelling at something I cannot change. I just have to keep eating well and keeping it clean with my nurse and it will heal. I asked God if he could heal it before Kyle and I may go on a vacation at the end of April. I also need to come off of oxygen 100% before we can make a far trip, so hopefully my body continues to get stronger. I will gain another 10lbs even if that means I have to eat a brownie every night. I will also continue to pray that my abdomen will shrink for comfort and healing. I am getting so close to normal CAITLIN that I can smell her just around the corner. I hope I get to be normal CAITLIN again even if its for a day or two. I just want to be the fit, healed, cancer fighting vixen with a flat stomach that I was before that whole 40day hospitalization that changed my life.

What Has Happened in the last 30days?

I have not updated my blog in a month. Personally, I was trying to spend less time on my computer and phone & focusing more on my time with Kyle and my family. After the death of two of my best friends this past year being on social media has been very difficult. I keep wishing I could text Aziza or Hayley, but I can't because stupid breast cancer stole them from the world. Only amazing memories of these two gorgeous ladies live on & I have to admit being off of Facebook isolates me from friends, my online support group and seeing if anyone I know who also has Metastatic Breast Cancer has died. With each person that dies in the group I wonder when will be my time. This type of thinking has been unfortunate for my mental health, so to be happy I withdrew. In the 30days I vanished things have changed and things have gotten marginally better.

Scan Update:
I had my 3mo CT scan on 1/29/18. It showed regression everywhere, but my liver which showed progression. My liver enzymes were on the upward swing & my doctor and I both are concerned if there is any change in my liver mets. My two oncologists spent a week debating on increasing my doses of Ixempra and Xeloda, keeping me on the same regimen for two rounds and rescanning OR changing my IV Chemo, because the huge impact on my recovery happened when we added the oral Xeloda to the IV Ixempra. In the end my doctors decided that Ixempra did it's work, it got me off a respirator and out of a hospital to my home, but it was time to change my IV Chemo to focus on more regression and work on my liver and brain. They also looked into immunotherapy trials which my doctors feel are the next step if we can keep my brain stable and regressing with chemo.

Brain Update: 
I am not having radiation done to my brain at this time. I actually think this is a smart idea to keep my body away from more radiation toxicity and allow Xeloda to continue to work on my brain. Xeloda actually crosses the blood brain barrier, while most chemos are too large of a molecule to go into the brain's blood vessels. The blood brain barrier protects our brains from toxins and well CHEMO IS A TOXIC CHEMICAL. I am switching my radiation team to Sloan also. My doctor can coordinate with the team at MSK easier and they also communicate better with me.

Lung & Fluid Update:
My PleurX catheter was removed on 2/9. My lung stopped draining fluid, which is a sign of regression, so we removed the PleurX. It is nice to have the drain and Trach out. I am unfortunately still on 1L of Oxygen. I will be getting a portable Oxygen Concentrator tomorrow which is the size of a small cross-body purse. This will allow leaving the home to be easier. Right now, I have to haul small oxygen tanks in our car & we have to time out the oxygen containers with any trip we take. The portable concentrator is battery charged and does not need to be refueled with an oxygen tank, it feeds the oxygen to me based on the breaths I take through my nose. The fluid in my abdomen has been checked another two times. I no longer have ascites, but my belly is still distended from the shrinking (YAY) 9cm tumor that chose to reside in my abdomen wall last May. I just want my belly flat to wear a dress by June. Right now I hide it with leggings and big sweaters, its literally not big at all, but I am all but 120lbs and 5'6" so a belly on me is like pregnant lady walking. I hope that changes as I start the new IV Chemo and I continue to gain weight. I have put on about 20lbs since October. My goal is another 5 by March and another 5 by April, so I am back to weighing 130lbs. The wedding and progression of my cancer last year made me super skinny, too skinny IMO. I am working on that with food and continued practice of my physical therapy & re-introduction to exercise.

Chemo Changes: (the only crappy thing beyond still having the bed sore wound...)
We are keeping me on oral Xeloda 2,000mg a day for 14days and 7days off. I keep taking this drug orally until we see lung or abdomen progression. Seems like the Xeloda is really tackling those two shitty tumor parties. We added Abraxane weekly to start to tackle the slight progression and to continue on my (hoping and praying) journey to getting off of oxygen. They started that Monday and I already had a puke fest when I got home. Seems like the drugs that don't need pre-meds I need pre-meds, so next week they probably have to give me an anti-nausea drug before or after my chemo. They are also going to add Avastin every 2 weeks, starting either in two weeks or on my second round of Abraxane. The delay in Avastin is due to my insurance, which I honestly am not upset over, I would rather know what side effects are Abraxane & Xeloda V. the Avastin with Abraxane & Xeloda. This means more days at chemo, but the whole chemo day was 2hours including labs, meeting with my oncologist, and getting the drugs. My lab-work also looked better yesterday, so despite having liver progression, my enzymes dropped or remained stable, my carbon dioxide in my blood is normal and my protein in my blood is finally normal. It is not so secret that I am grateful for Xeloda and the doctors who created it. It has been the only chemo to cause regression and 1 of the 4 treatments that caused regression or stability out of my 11 types of chemo and anti-hormonal combos.  Xeloda has saved my life twice. Once in 2015-2016 and again in 2017-2018. I do not know how long it will keep working, but I am glad God put people on this earth to make the drug and having it work for me when I needed it the most. (if you are interested in learning about my chemo, I added hyperlinks above to direct people to the drug information)

More Good Things: 
1. Physical Therapy is OVER~ I graduated physical therapy on the 29th. It was a bittersweet ending, but my PT instructor had me doing modified burpees, pushups, weighted stair climbing, running in place with weights on my legs, lunges, squats, deadlifts and tricep dips. In his words - "it is time for you to rip out those 30min Tony Horton DVDs and challenge yourself once or twice a week and do my workout twice a week until Tony Horton becomes easy again. So...like a perfectionist always will do, we follow directions. I did my first Tony Horton p90x in 30minutes on Sunday. IT WAS THE HARDEST THING I HAVE DONE FOR EXERCISE SINCE I STARTED THE PT IN OCTOBER. I had to pause the DVD, skip two moves, workout slower, and I was left sore as all hell. I was upset that I couldn't keep up with even the modified chick, but I need to start somewhere and Beachbody workouts are no joke and I finished the workout and plan to try another tomorrow. When I can't do one of Tony's moves, I have been inserting one of the moves my PT instructor taught me. He was the best teacher and the VNA of Central Jersey is lucky to have Chris. He motivated me when I thought I could never walk without a cane, walk upstairs again, or get off the floor. He had me hitting all my goals and left me with one on the 29th - GET BACK TO DOING WHAT YOU LOVE SO DO YOUR DVDS AND START HIKING IN THE SPRING EVEN IF YOU CAN'T GO FAR. Ideally, I would love to be back Rock Climbing and Biking too, but I am fine with an easy hike in Holmdel Park or Hartshorne woods before I start tackling PA trails or the trails we CLIMBED (not hiked well we hiked too but I had to climb UP a mountain) in 2016 when we went to Maine.
2. We got a new lease. We spent months debating on a new Subaru Legacy or Forester. We ended up getting a Black on Black 2018 Forester in MY NAME, so I plan to be here a while as that lease is 3years. (you hear that fate I cannot die in the next three years because we have an awesome car I am legally tied to LOL)    
3. Transitions Hair Solutions rocks because I have long hair on my head again. Danielle, my awesome hairdresser who also drove into NYC to remove my wig last September, put back on my beautiful Cesare Reggazi hair. I feel pretty with my long hair. I just keep hoping I keep my brows and lashes on Abraxane. If not, Ulta did show me briefly yesterday how to draw on my eyebrows using a pomade. I am sure if I go back they can  show me how to draw on eyebrows naturally and also how to line my eyes to make it look like my normal black-brown lashes.

That is about it. Kyle is still sporadically working from home and is my F/T caregiver. We are still living paycheck to paycheck, but I am not sure if that is any different than anyone else in our situation. We are still running my GoFund Me page. My finances are running low after paying down some doctor debt and we need to eat. Even if you want to feed us, message me...I do cook again, but most of our money goes to my medical care and food. Our other bills were being paid by the gracious donations in our Go Fund Me.

I MADE IT !!!

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.

Good Days MORE than Bad

I usually forget to update when things are going good. Back on September 29, I was discharged from the hospital. I did not think I would be alive to see Christmas this year. I was really sick. Sicker than I thought I ever would be. Then the issue a second opinion Doctor brought to me about going on a chemotherapy I used previously with the current chemotherapy I was on from Sept to Oct...really reinforced that belief. All my doctors said I looked sick & I did. My skin was grey. My eyes were dull. My stomach was huge and filled with ascites, which is fluid excreted from the tumors in my abdominal lining. My legs and arms were sticks and I had the posture of a question mark. I only left home for doctors, I could not walk up stairs and I had to use a wheelchair in public, because walking more than 5minutes exhausted me.

I was sad that I was this sick. It was not how I pictured my first year married to Kyle. I was devastated that I would not see our 1st Anniversary and that my health declined THAT fast and I had no control over it. What did I have control over - taking my medication, continuing to pursue trials with my doctor to plan for a future, work on getting stronger with physical therapy, and praying to god nightly to help me heal. I did not expect to heal. I was watching my friends die who's health was better than mine, yet I was still here. I did not know what was going on, but one day one of my doctors said "You look great." I said "what?, just three weeks ago you told me I looked horrible." Apparently after 1 round of the new chemo combination, my skin was brighter and my stomach was shrinking. Like I said in my last post... a rainbow came out of the storm.

I am still seeing myself getting better. My doctors, nurses, therapists, and family members have all commented on how much  better I look and how much stronger I have gotten. I still question what the heck happened and is happening today. I also cannot guarantee that the changes that have happened cannot reverse themselves as quickly as a beat of a fruit fly's wings. That is how fast cancer changes. For today, I am thankful and blessed that I feel good and the physical evidence shows that I am doing well.

I continue to watch my stomach get smaller. I have most recently drained 700mL of fluid at my last paracenticisis which was biweekly (this is coming from 2.8L of fluid 2x a week back in the first week of November). My PleurX drained 40mL of fluid yesterday, this is down from draining well over 500mL of fluid 3x week. My traech is out and as of today the wound is healing and my breathing remains strong. My need for oxygen has gone from 5L of oxygen per hour to 1.5L of oxygen per hour. On January 4th, I see my pulmonary doctor to get tested on room air to see if I even need oxygen.

Honestly I am scared this will change. My oncologist and I said the short term goal is to get me off of oxygen so I can get to Dana Farber and Columbia to discuss clinical trials for the future. There is a future... a potential future of treatment. I still question "is this my last chemo, will I go on Hospice?"

I am STILL waiting on getting my insurance to approve my Stereotactic Radiation. My insurance denied it because I had radiation 5months ago and 1 new spot was found on my MRI, so they said "according to their standards I need whole brain radiation." My medical team feels I need targeted radiation as my spots are small and targetable, so we have actually gone to a second level of appeals. I will know on the 26th if it got approved. Otherwise, well....lets not think about what could happen. For now we wait and I will update my blog on that when I know more.

BUT the good news is I made it to Christmas. Next goal is make it to 2018. The most awesome thing is I can walk up stairs with 6lb weights on my legs, I can do squats, deadlifts and lunges with little baby weights, and today I did bicep curls with 8lb weights. It may not seem like much, but on Sept 29th I could not go to the bathroom alone and relied on a cane to walk in my own home. I had to lunge myself upstairs with assistance from two people. I needed a wheel chair. I walk everywhere I go now. I actually vacuumed my house, cleaned the bathroom, and have been doing the laundry daily. I could not do that even two weeks ago.

It blows me away how blessed I am. I continue to hope and have faith that this treatment will work to get me off of oxygen. I hope that if it stops working there will be another chemotherapy I will be strong enough for or a trial that will blow my cancer away. Regardless I will continue to work to remain strong by doing my physical therapy, getting out of the home, praying to God, eating to gain weight, and using my mind to remain hopeful and keep the faith in God's blessings he has given me to get healthy.

Merry Christmas everyone! I am so excited for this holiday. I may not be able to give much, but the decorations and seeing my family will be enough to enrich my soul. <3

A Rainbow After a Storm

For the last two to three weeks, I have seen a rainbow coming out of a crappy cloud of my medical life and well LIFE in general. This is all after a 1. A BAD CT SCAN and also 2. A NON OPTIMISTIC SECOND OPINION (which happened the day after the bad news post).

On 11/10, I went to Cooper Hospital, which is affiliated with MD Anderson in Texas (one of the top cancer centers in the US). I met with the director, who was kind, honest and flexible considering she made time to see and review my case so fast. In summary, she did not feel that the combination of Ixempra and Xeloda after seeing Ixempra not work well in my abdomen as a wise choice of chemotherapies. She recommended that I try Doxil, but that would be the only chemotherapy I have not tried a sister drug of in the Stage 4 world. I also was/am too sick with the traech and oxygen to be considered for a clinical trial. Tears were shed. She mentioned just preparing myself for possible hospice soon since none of the treatments I have been on since April have worked and stats say that you get less time on treatments the longer you thrive with Stage 4 Breast Cancer.

I left depressed. My PleurX was back to draining more than it was three weeks ago prior to that appointment. I actually had good news to share with my doctors at the hospital follow up appointments. BUT the CT scan and my lab-work on 10/30 showed a whole different picture. I honestly did not understand, but my hope was that Xeloda would work again and dig me out of a pulmonary and Ascite hole. See back in 2015, I had Oblina the Left Lung PleurX and small Ascites in my perionetal lining (not that I had an egg then, but my digestion was all screwed and I went to the ER constipated and was for a good month if I did not use a laxative). Here I was getting IV chemo that makes me vomit and back swallowing these pink Xeloda pills (that smell like chemicals) AGAIN and was told there was no point but to try it for three cycles at least.

Did I have time to give 9 weeks of my life to see if Xeloda works... I do. I do not like giving up on a treatment before knowing it is a failure with scans, labs, and a proper time (6-12 weeks) to see if its doing something good). I told myself, give it until you go through three rounds of chemo with Xeloda and three more Ixempra doses and go get yourself a CT Scan. That would bring me to January 2nd. I guess I have to make it through the holidays huh? I guess so.

Time passed, days passed, I ate food, did PT workouts, did more chores around the home, continued with my in-home nursing visits, and started to get my Ascites drained weekly because they FINALLY documented the EGG as an Ascite on a CT Scan. I told them I had ASCITES when I went to the ER in August...bla bla bla it was poop, trust me no one has a poop that big and I do not walk around like Stan's DAD on South Park waiting to shit a giant COURIC out of me for a world record. It was not poop and I have had big poops and did spend the last few months of 2015 constipated and I was only bloated. (beware graphic GIF from a cartoon). THIS is literally what Cornell doctors told me I had in me.

The rainbow that came out shone maybe two weeks ago. I was magically able to squat, walk, and climb flights of stairs (yea that happened) with weight strapped to me without COUGHING and not needing a decade of recovery time. My Right Oblina 2 PleurX was draining less each day. My Acsite draining was draining less. What is happening? AND my Liver enzymes (although not alarmingly high) were dropping and my protein levels in my blood were rising.

So I am not sure what is happening. They put me on Lasix at the end of October because my legs were swelling and felt like CLAY. This my friends is a sign of the kidneys and liver not being able to get fluid out. The fluid was NOT improving with protein intake & it turns out I was on Lasix in the ICU and one attending doctor stopped it & that is when my feet and left arm (the one with lymphedema) blew up like a MACYS DAY FLOAT. Literally I could not fit into any shoes past 12p and my arm was 4x the size of the right arm. It did not fit in many long sleeved shirts I own. I am a size XS or S...so I had to buy new clothes for my ARM and put on shoes at 7am or just keep my legs elevated on this horrible wedge pillow I got at Walmart that only solved the problem for like an hour. It was crappy. None of my lymphedema garments fit and I can only wrap my left hand properly and the stuff to wrap my right forearm was too small or too large depending on the time of day, so I had a pop-eye forearm going on for a month post hospital.

The fluid retention and the EGG belly and the CHEMO not making me better was wearing on my hope and my faith that I could get better or at least continue to try to get better. Sometime around the whole less draining of fluid my EGG shrinks every week by a little bit. My hand & my forearm are now just 2x the size of my right arm - which has been gaining muscle so that could also contribute to the lack of weird arm/hand mismatch. Oh and my legs do not feel like clay nor do my feet and the feet only swell to the size of my UGGS, so probably a size 9 and I wear a 7.5 or 8 normally, on a bad day. I was able to wear my sneakers to PT again regardless of the time I put them on, in the afternoon they may be snug but I could get into my size 8 sneakers.

I want to say this means Xeloda is working. I saw both my Pulmonologist and head Oncologist last week. Oncologist is having my local Sloan doctor see me for two more chemotherapies based on excellent lab work (improving), better presentation, great air passing through lung, shrinking EGG belly and no more clay legs, and my Pulmonologist's good report we got two days prior. We also discussed my recent Brain MRI. The updates on my recent Brain MRI and what we are doing to those 10 spots from July that are still 10 spots because the rest of the radiated spots are pretty much not visible, but those tiny spots are and a few grew a tiny bit (millimeters). I have to follow up with my radiation oncologist via email and make an appointment to discuss what she my Oncologist and Neurosurgeon want to do. My Oncologist is suggesting adding a chemo called Avastin and doing SRS to any problematic spots they see. My Oncologist and I do not want to halt chemo if it is working to do WBR at this time. ALSO there are a lot of good trials using WBR that Sloan has and if I have the traech I cannot do them NOW and if I did WBR already I cannot do them if the traech is removed. I will know more next week once we put the calls and emails in. I am going to email them now before I forget.

The best was my Pulmonologists decision to.... wait for it....TAKE OUT THE DAMN TRAECH. YES you heard it. I saw my Pulmonologist and he wants to take out my Traech based on my chest XRay. He wants to see the CT Scan from October, but it is now 1mo old and 1.5 rounds of Xeloda have been ingested by me. He may want a new CT Scan to see if he can also remove the Right PleurX or possibly giving me another left PleurX to drain minimal fluid he thinks was there in the chest XRay, but it could me abdominal ascites clouding the left lung. We will know what he decides for 100% this week. Kyle is calling them tomorrow to see if they got my CT Scan discs, if we are for sure removing it, if they want a newer CT Scan to view my lungs in the more recent present, and when they will remove it. My Oncologist said to push to remove it as soon as possible. She has no problem doing it the week I have chemo because neither drugs affect my White Blood Cells, Neutrophils or Platelets (all of which need to be good for surgery).

SOOOOO THE next blog post will update people on when or if I am getting my traech out for 100%. Also WHAT we are doing for my BRAIN. In the new year the plan is 1.to be without a traech, 2. get a full body CT scan, 3.pray this chemo is working and 4. consult with two doctors my Main Oncologist suggested - Dr. Nancy Lin at Dana Farber regarding my Brain Mets and trials & Dr. Kevin Kalinsky at Columbia regarding my ER positive cancer and trials.

pray that the traech comes out and that whatever we do about my BRAIN is what my ONCOLOGIST suggested, because i just like her idea :-)

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.