Tuesday, February 13, 2018
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.
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.
Sunday, January 14, 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.
Saturday, December 23, 2017
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
Sunday, December 3, 2017
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 :-)
Tuesday, November 7, 2017
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
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
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.