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
Saturday, December 23, 2017
Sunday, December 3, 2017
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 :-)
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
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.
The CT scans proved I had ascites and I was being set up for a 3rd Paracentesis at Riverview Medical through Sloan, but this time a drain was going to be placed. I have walked around with an EGG shaped stomach for 60days. I was told to gain weight and it would dissipate, I did. The EGG remained. I was told to eat 75-90g of protein a day due to being insufficient in protein which is why I was also retaining fluid in my feet and lymphedema arm. I have been and my protein has not improved on labs. My labwork is pretty much perfect. My alkaline phosphate is elevated by a lot, but that does not point to any organ failure or something we do not know - Cancer is in my abdomen and on my liver. That number and my tumor markers doubled in-between my 2 outpatient chemos in October. My scans also showed slight growth of the abdominal tumors.
What do you do when there is slight progression? My doctor usually changes chemos. This time we are adding the chemo pill, Xeloda 1,000mg a day for 14days on, 1 week off, to my every three week schedule of Ixempra. She wants to do two rounds and then rescan me.
What is the plan after that? Usually my doctor has one, but right now she thinks I am too sick for a trial. Need to get stronger. She is not sure if there is something she has not tried that I have not had a similar drug to in the past. This is wonderful (sarcasm). Not giving up on me, but running out of options she can think of. This is when I say "F that" and ask for second opinions, I ask my friends on Facebook. I ended up getting into MD-Anderson Cooper to see Dr. Grana thanks to LBBC for calling them for me and helping us see her. We also will be see Dr. Kalinsky at NYP-Columbia, who runs a lot of clinical trials at that sister hospital to NYP-Cornell. Odds are, they have nothing I do not know already.
I know I have had multiple lines of chemotherapy, which limits trials. I have used every anti-hormonal. I have even gone on off label drugs, which failed to work and resulted in rapid progression of my disease. I know my family was told in September that I would not leave the hospital and to get my affairs in order, but I left and I am here. I no longer look like a starvation child. I look like a well fed pregnant with cancer woman. I was told by my doctor that in no way she is giving up on me, but I need to actually start to think about the day where I am going to be off treatment and made comfortable. The word hospice has been said in my presence. Lets just say things look good on one end and bad at the next end and I am a teeter totter either getting a hopeful recovery or going on Hospice and possibly not seeing my 1st wedding anniversary in April or even seeing 2018 with sound mind.
Why am I writing this? Because no blogger does. Some do, but a lot of us do not even want to think that we could be facing the end. I have hope in second opinions. My oxygen and trach prevent me from going far to get them. I would love to go to Dana Farber, but that trip would be huge in winter with a girl who needs oxygen and her trach is still within her.
The trach might be able to come out, when I do not know, before Thanksgiving like I hoped, probably not. We are waiting on getting a night nurse to monitor me for a few weeks off my two hours of sleep I use the manual ventilator and not just me and my oxygen. Kyle nor our parents are medical professionals and we tried it and all got freaked out. We turned to insurance and are waiting for those steps to get put into place. This really is a bunch of paperwork that needs to get send by my Pulmonologist to my Insurance Case Manager, who said last week she will start the ball on that now.
I want to call two more hospitals for second opinions. I know we called NYU and I have to email a friend who knows someone at Dana Farber. NYU said they will call when they get my records from Sloan and Cornell. I have to email my friend about Dana Farber (reminder send email now).
I do not want to accept "comfortability" if I have not given my all to get stronger. I am stronger. I can walk up the stairs easy peasy even after the Pleurodesis I had yesterday. I eat food that will make me gain the weight my doctors ask me to, so I can withstand treatments. I go to every VNA appointment and do whatever they ask... If it will get me better I will do it.
I am not going to give up because of this EGG shape my (great muscular) body has formed into. I will give up when I know I have searched high and low for the answers to make me better and there is nothing nowhere nada zip. Then I am ok with going into that nothingness...nowhere, blackness, zip. For today, I choose light, life, and love.
Sunday, October 22, 2017
Hard Road Ahead
I have been home 22 full days. That is almost a month of being home and unable to talk to anyone for too long and it has driven my mind up the wall and back. Trust me that has been no walk in the park for my parents or my husband to care for me during these few days on this long road to recovery. Yes, I have had two sessions of speech therapy at home and I have a valve I can and try to use to speak with, but some days I just don't use it. I don't use it because it takes a lot out of my lungs and I also want my voice not some breathy voice. I miss singing, or being able to sing to my cat, who has been hesitant to come near me for too long. I was gone 40days, I abandoned her and she is making it clear to me she is pissed. Not only is the cat pissed, my horrible resting bitch face (which makes me look sad and gloomy and angry) makes everyone assume I am feeling that way and I try to talk and just make these huffing noises and flap my arms around (i use my hands a lot when i speak), so yes I guess I look like I am in distress. I have learned to try and improve my face and not use my hands to speak anymore. I have been able to have short conversations with my Passimir Valve (talking valve), but it needs to be quiet and I need to be calm and distractions need to be gone, so no tv no phone.
Being home has not too bad, but the road to getting my voice back has been tough in the hospital, but only got harder in the real world when I have to put even more work in and I am faced with real life challenges that never were challenges to me as an adult, maybe as a toddler, but I am 33 and I can't walk up many steps using both legs without support. That is my reality and I spend most days doing simple workouts to build strength so I can get in and out of my house.
I shed the cane by day 7, so at home I walk. In my only public activity, which has been going to doctors, we use a wheelchair, but I have an will walk if I can. On the other hand having a wheelchair is great because I walk slow and have to have two people drag oxygen tanks and traech-gear with you everywhere. You see that TWO PEOPLE. I would not be able to get anywhere without two people. I have an entourage, someone pushes me and carries stuff for me & the other person has to carry all my medical gear. Downside to the wheelchairs is that they cause my bed sore pain. I got this awesome wound/sore in the ICU within days because my bed sucked and no staff thought to move the shrinking in size, unconscious patient. I guess they thought I was not going to make it out of there. Who knows, but I hate pain. Who likes pain?? NO ONE.
Most of these days I am alert and attentive, but I speak via notebook and hopes that you might be good at mouth reading. If you call me, I will not answer, someone from my entourage will speak for me. If you want to speak with me, which seems like the same few people have outreached me. This number gets less and less the sicker I get. I get it, my disease scares you, but imagine how if feels if you were sick and I just dipped off the face of the earth and never asked how you were doing. It would hurt, make you feel alone, and it really highlights who really is there for Kyle and myself.
All signs point to Ixempra working. These are the reasons to get a little excited that a treatment is working and may help me get strong and back to me again. First good thing is I have Oblina Deux (my second PleurX cather) in my right lung and she has gone from draining 500mL of cancerous goo to 200mL of cancerous goo every other day. I even graduated to getting it drained twice a week. I know from the PleurX (Oblina) I had in 2015 my lung drained less fluid and the cancer melted away. I have gone from needing 5L of oxygen to 3-3.5 L daily within 3 weeks. My recent chest x-ray on the 19th showed improvement since my last chest xray at the hospital. these changes all happened after a third dose of this chemotherapy.
Medical Updates have been good. My oncologist has moved from NYP-Cornell to Sloan Kettering and I followed her. I was too sick to make the trip into NYC to see her post surgery and she had me see an oncologist at the Sloan Kettering in my town. We also arranged to have my scans, labs, and treatments done there with this doctor & that I will go into NYC 1x/mo to see her & my Brain radiation team and/or my pulmonary doctor whom are all at NYP-Cornell. The idea was to reduce my trips into the city because I am oxygen dependent and the trips are long all day processes.
Since my last blog post, I had another dose of chemotherapy. I learned that this chemo is sneaky and gives you nasty nausea on day three/four. We hopefully will fix that by having me take Zofran for the 4 days following chemotherapy. I will let you know after the 30th (dose 4) how that goes. My oncologist said her goal is to get me fat and clear up my lungs. I have my first CT scan since the one I had in the ER this Wednesday. Please cross fingers, toes and even your eyes if you got to that the scans are good. These scans determine if I stay on Ixempra.
I also saw my Pulmonary Team and had a good report from the doctor when he saw my chest Xray and gave me an exam. I can schedule the trach removal if I am off the ventilator for 2 weeks without any problems and my CT exam this week shows improvement that was seen in the chest Xray. I was told that I need to be off of the Ventilator 100% for a few weeks before we schedule closing the trach. Right now we have been weaning me off of the vent since I got the trach in the hospital. I was able to go a full night without it once, but have been most comfortable being on it for 3hrs and sleeping the other 5. I heard that closing of the trach is possible, so my goal is to get to sleep on time and to work with Kyle and my medical team (who suggested the weaning schedule we have been using) on getting me off this vent. I hope I can do it. My lungs are weak from the years of having cancer in them and lungs do not rebuild themselves like starfish. They need time, medicine, and rest to heal. We also discussed possible removal of the pleurX drain because its draining less with each chemotherapy.
I also had the egg that grew in my belly in the ICU drained 1x outpatient. It was drained 2x in the hospital and 2.4L of ascites came out. I had it drained two weeks ago and only a tiny bit of fluid appears to return. It looks like that is resolving itself also.
I am still dealing with swollen feet, a swollen left arm, and swollen ankles. This all happened due to my lack of appropriate nutrition in the hospital and lack of movement. I met with a Nutritionist through the VNA. They helped me make sure I get enough protein and fluid, which are important for getting the fluid out of me.
I still have the VNA coming. They have been sending someone everyday since I have been home (minus a few weekends). It has been helpful to have someone help me or show me how to get stronger and help myself here at least once a day. I get the most benefit from Physical Therapy and Occupational Therapy because I want to get back to doing things on my own and having the endurance and strength to do day to day chores & get out of my home on my own no problem.
I still have Kyle here, home with me, nursing me everyday. It takes a lot out of him. His coworkers have been incredibly supportive like always and his family has also been quite helpful for both of us. We appreciate it. He told me a few friends reached out, but he does not have the energy to engage in much because he is tired and has been consumed with worrying and caring about me. THIS has taken so much out of the most amazing man on this planet it pains me. I hate seeing him tired and exhausted all at the sake of me. He loves me so much he puts everything aside. Not many men can do that but he can. I want this man back as my husband. I want to get better so he doesn't have to be my nurse or someone find us a good in home nurse to take the responsibility from him.
My parents have given up their lives to be here to clean, cook, keep me company, and help Kyle take me to and from doctors appointments. It takes a lot out of them. In no way should they have to take care of their 33yr old daughter. The situation should be reversed, but it is not and they are here doing what any good parent would do. They are helping me not go insane and helping my husband not feel like he has to do everything medically and environmentally (cleaning, cooking, laundry etc) for me. I just started to have the energy to wash my own dishes and put them in the dishwasher. I try something small daily to add to tasks they were doing for me that I can start to do on my own. I try and I will get better with Kyle and my parent's help.
Ultimately medically I am doing well. But because I am being kept so active by the VNA and doctors and doing doing simple Physical/Occupational Therapy exercises. You might find that I am even more inattentive because I am tired, in pain, and should be resting, or enjoying myself so I HEAL. Working hard, resting, and using all the resources I am given to use to get better will help me heal. I just need Ixempra to keep kicking cancers butt so my body has the strength to keep doing this.
I want my voice & strength back. I want my husband back and retire his stint as my nurse. I want my parents to go back to enjoying their own lives. Honestly just miss singing to my cat. It brought me so much joy. I think she misses it too, but she knows mommy is sick and that is probably why she stares at me and is unsure of what to do..... or maybe its my bald head. Who knows.
More updates to come when the CT scans come in.
Being home has not too bad, but the road to getting my voice back has been tough in the hospital, but only got harder in the real world when I have to put even more work in and I am faced with real life challenges that never were challenges to me as an adult, maybe as a toddler, but I am 33 and I can't walk up many steps using both legs without support. That is my reality and I spend most days doing simple workouts to build strength so I can get in and out of my house.
I shed the cane by day 7, so at home I walk. In my only public activity, which has been going to doctors, we use a wheelchair, but I have an will walk if I can. On the other hand having a wheelchair is great because I walk slow and have to have two people drag oxygen tanks and traech-gear with you everywhere. You see that TWO PEOPLE. I would not be able to get anywhere without two people. I have an entourage, someone pushes me and carries stuff for me & the other person has to carry all my medical gear. Downside to the wheelchairs is that they cause my bed sore pain. I got this awesome wound/sore in the ICU within days because my bed sucked and no staff thought to move the shrinking in size, unconscious patient. I guess they thought I was not going to make it out of there. Who knows, but I hate pain. Who likes pain?? NO ONE.
Most of these days I am alert and attentive, but I speak via notebook and hopes that you might be good at mouth reading. If you call me, I will not answer, someone from my entourage will speak for me. If you want to speak with me, which seems like the same few people have outreached me. This number gets less and less the sicker I get. I get it, my disease scares you, but imagine how if feels if you were sick and I just dipped off the face of the earth and never asked how you were doing. It would hurt, make you feel alone, and it really highlights who really is there for Kyle and myself.
All signs point to Ixempra working. These are the reasons to get a little excited that a treatment is working and may help me get strong and back to me again. First good thing is I have Oblina Deux (my second PleurX cather) in my right lung and she has gone from draining 500mL of cancerous goo to 200mL of cancerous goo every other day. I even graduated to getting it drained twice a week. I know from the PleurX (Oblina) I had in 2015 my lung drained less fluid and the cancer melted away. I have gone from needing 5L of oxygen to 3-3.5 L daily within 3 weeks. My recent chest x-ray on the 19th showed improvement since my last chest xray at the hospital. these changes all happened after a third dose of this chemotherapy.
Medical Updates have been good. My oncologist has moved from NYP-Cornell to Sloan Kettering and I followed her. I was too sick to make the trip into NYC to see her post surgery and she had me see an oncologist at the Sloan Kettering in my town. We also arranged to have my scans, labs, and treatments done there with this doctor & that I will go into NYC 1x/mo to see her & my Brain radiation team and/or my pulmonary doctor whom are all at NYP-Cornell. The idea was to reduce my trips into the city because I am oxygen dependent and the trips are long all day processes.
Since my last blog post, I had another dose of chemotherapy. I learned that this chemo is sneaky and gives you nasty nausea on day three/four. We hopefully will fix that by having me take Zofran for the 4 days following chemotherapy. I will let you know after the 30th (dose 4) how that goes. My oncologist said her goal is to get me fat and clear up my lungs. I have my first CT scan since the one I had in the ER this Wednesday. Please cross fingers, toes and even your eyes if you got to that the scans are good. These scans determine if I stay on Ixempra.
I also saw my Pulmonary Team and had a good report from the doctor when he saw my chest Xray and gave me an exam. I can schedule the trach removal if I am off the ventilator for 2 weeks without any problems and my CT exam this week shows improvement that was seen in the chest Xray. I was told that I need to be off of the Ventilator 100% for a few weeks before we schedule closing the trach. Right now we have been weaning me off of the vent since I got the trach in the hospital. I was able to go a full night without it once, but have been most comfortable being on it for 3hrs and sleeping the other 5. I heard that closing of the trach is possible, so my goal is to get to sleep on time and to work with Kyle and my medical team (who suggested the weaning schedule we have been using) on getting me off this vent. I hope I can do it. My lungs are weak from the years of having cancer in them and lungs do not rebuild themselves like starfish. They need time, medicine, and rest to heal. We also discussed possible removal of the pleurX drain because its draining less with each chemotherapy.
I also had the egg that grew in my belly in the ICU drained 1x outpatient. It was drained 2x in the hospital and 2.4L of ascites came out. I had it drained two weeks ago and only a tiny bit of fluid appears to return. It looks like that is resolving itself also.
I am still dealing with swollen feet, a swollen left arm, and swollen ankles. This all happened due to my lack of appropriate nutrition in the hospital and lack of movement. I met with a Nutritionist through the VNA. They helped me make sure I get enough protein and fluid, which are important for getting the fluid out of me.
I still have the VNA coming. They have been sending someone everyday since I have been home (minus a few weekends). It has been helpful to have someone help me or show me how to get stronger and help myself here at least once a day. I get the most benefit from Physical Therapy and Occupational Therapy because I want to get back to doing things on my own and having the endurance and strength to do day to day chores & get out of my home on my own no problem.
I still have Kyle here, home with me, nursing me everyday. It takes a lot out of him. His coworkers have been incredibly supportive like always and his family has also been quite helpful for both of us. We appreciate it. He told me a few friends reached out, but he does not have the energy to engage in much because he is tired and has been consumed with worrying and caring about me. THIS has taken so much out of the most amazing man on this planet it pains me. I hate seeing him tired and exhausted all at the sake of me. He loves me so much he puts everything aside. Not many men can do that but he can. I want this man back as my husband. I want to get better so he doesn't have to be my nurse or someone find us a good in home nurse to take the responsibility from him.
My parents have given up their lives to be here to clean, cook, keep me company, and help Kyle take me to and from doctors appointments. It takes a lot out of them. In no way should they have to take care of their 33yr old daughter. The situation should be reversed, but it is not and they are here doing what any good parent would do. They are helping me not go insane and helping my husband not feel like he has to do everything medically and environmentally (cleaning, cooking, laundry etc) for me. I just started to have the energy to wash my own dishes and put them in the dishwasher. I try something small daily to add to tasks they were doing for me that I can start to do on my own. I try and I will get better with Kyle and my parent's help.
Ultimately medically I am doing well. But because I am being kept so active by the VNA and doctors and doing doing simple Physical/Occupational Therapy exercises. You might find that I am even more inattentive because I am tired, in pain, and should be resting, or enjoying myself so I HEAL. Working hard, resting, and using all the resources I am given to use to get better will help me heal. I just need Ixempra to keep kicking cancers butt so my body has the strength to keep doing this.
I want my voice & strength back. I want my husband back and retire his stint as my nurse. I want my parents to go back to enjoying their own lives. Honestly just miss singing to my cat. It brought me so much joy. I think she misses it too, but she knows mommy is sick and that is probably why she stares at me and is unsure of what to do..... or maybe its my bald head. Who knows.
More updates to come when the CT scans come in.
Sunday, October 1, 2017
A Tracheotomy & 40 Days in an ICU after an Innocent ER Trip
Well world last we spoke I was starting Optivo. I had two rounds things were stable with scans in a few weeks. Around a week after cycle 2, I started having to use the oxygen tank I got when I had pneumonia. A day goes by wifh this and we took me to the ER.
August 28th was the day we entered that ER. I also developed a stomach like I was birthing a baby. I knew they were ascites or the cancer in my torso lining. So we took me to the ER to hope the lungs were either the cancer, pnerumonia, hopefully not pnemonitis, or nothing. The stomach I hoped was a lot of bowel movements.
ER tells me my stomach is nothing and to follow up with my doctor. The ER did think something was wrong with my lungs and/or heart. Scans and waiting aside I was admitted to have a Broncoscope to determine what was causing my shortness of breath and my lungs were strong enough to handle this procedure. It would be a few nights in the hospital and I go home on the right treatment whether that was off Optivo, treatment for pneumonia or pneumonitis.
40days later....I go home.
How did this happen? A basic procedure led to my lungs bleeding and I had to be intubated. A biopsy 6 doctors said to do & I almost died.
I wake up in the ICU and was told this by my family. The only way off the ventilator was my lungs are strong enough to go off intubation alone or a traecheotomy. WTF I was depressed and hooked up to a feeding tube I ripped out on a few occasions. Sad depressed exhausted all I did was sleep and hope maybe causing other issues would just end this nightmare.
Now with lungs as weak as mine I doubted that I could come off ventilator and I did not want a traech. Honestly I wanted to die.
I am being honest but I was alive and had two options to get home. We first got me off of the ventilator system, but my lungs absorbed too much CO2 & turned me into a nut job who now had one option-traecheotomy.
Kyle and I discussed this. People wanted me home. I also could not live at the hospital trying chemo on a ventilator much longer. After much depression that ran so deep it hurt. I also woke up with pounds of weight loss and a defeated spirit. Goodbye normal life & hello traecheotomy.
So now the goal for cancer was to get me off of the traech with a good chemo to get my lungs better. I can only hope that works because a life with a traech is not easy. I started Ixempra in the hospital. They did not think I would make it on chemotherapy with the state of my body.
I survived and had two cycles of Ixempra by the time I went home with a traech and the body of a steriotypical cancer patient.
We are finally home. I can't take care of anything but eating, drinking and doctors.
I was discharged to a mini-nursing home and my new husband is my 24/7 nurse. Imagine not being able to walk, shower etc because you are attached to some type of life support. I also have a pleurX drain again as I was right about filing with fluid over 40 days ago.
We need help. I need help. I will be posting soon a site where people can help and with what. We will be paying for a CNA shortly because our parents & kyle are going to burn out too.
I'm not very much up for visitors now because I feel horrible about this all. I am adjusting to home. I will probably feel more at ease in ten days or so to have long visits. Right now we need to feed me, get me to doctors and out of this nightmare.
Monday, July 31, 2017
TODAY I WANT TO HONOR THE WOMEN I LOST TO CANCER
I woke up today reading a post from one of my friend's MBC advocacy sites, which stated that 113 women die of breast cancer daily & that 30% of early stage breast cancers will recur as metastasis (stage 4 - terminal cancer).
I miss my sister-friends who have passed from terminal breast cancer, most were under 40.
I miss my aunt who passed from terminal ovarian cancer. 70% of women with early stage ovarian cancer will recur and 14,080 women will die in 2017 from Ovarian Cancer.
I have lost so many amazing women gone because of a unrelenting evil disease, cancer, which on some days it makes me sad. I have less friends to call about cancer and less friends who "get it." It has become incredibly hard to get close to any new people with cancer, but I am sure each one of you would tell me that by closing myself off from other cancer sisters, I may miss the opportunity to have another friend that will enlighten my life & hopefully I will do the same to theirs.
I have learned so much from each any every one of them I hold dear to my heart.
~ I miss Aziza. I love you my Breastie - you know best friends with breast cancer, we all came together a group of 6 of us who text daily and will be friends forever. You taught me to let go and have fun. You were my fitness sister before and after our cancer spread. You taught me to not give up on what I love to do despite having Stage 4 cancer - so I traveled with you & with my family and friends, I kept working out within my limits, I kept working until I could not provide my clients the care I felt they deserved, and I got aquainted with cooking, small art projects, and the various new crafty hobbies you can drown yourself in at Michaels (for you it was candles, soap and jewelry making, for me it was art, crochet, and home decorating. You taught me to stand up for myself, to be eloquent when expressing my opinions, and for living life despite what the stats say. I wanted to call you everyday, I miss you and your infectious laugh. I am so glad our Breasties gave me a matching necklace that represents us and your angel wings watching over us.I could go on and on, but I will just end up a puddle of tears & I know you would not want me wasting a good day crying. I wish I could have seen you this past winter, but my health got in the way, I know you & Jon understood that, but I truly just wanted to laugh with you in person. Thank you for bringing your Breasties into your wedding and having us meet all your family & friends. You truly have so many genuine people who love you and still love you to this very second and beyond.
~ I miss Maryanne. I miss my chemo mother, my nighttime chatting buddy, my friend who hoped for research and cutting edge treatment, and to make medical changes anytime I do not feel comfortable and to never settle. She inspired us to choose where we went for my honeymoon, inspired me to change oncologists in 2015 when my first doctor & I were no longer a good fit, and she inspired me to advocate for our disease (well as much as I could through writing my blog, writing for LBBC, or taking interviews for various MBC websites.
~ I miss talking makeup and animals and our significant others with Kim. I miss her sending me pictures of her animals and her having fun at baseball games with Alex. I am glad she had me meet Alex online. He is an amazing guy & Kyle and I hope to make our trip to California to visit him & also see Aziza's husband Jon. Everyday, I look at the bracelet she made me with my all time favorite hockey team the Rangers. I think of how thoughtful and caring you were and how excited you were to send me that surprise. You loved sending little gifts. You loved your pink shoes and leggings that you would wear to chemo. You were never angry at the pink ribbon, you felt it was part of our sisterhood. Also I will never forget how gorgeous you look in 2017's Haus of Volta calendar, you radiated with your pink hair and that adorable teal dress. I wish I could have made the trip to do the shoot with you, but I think your beauty with your VW Bug is perfect in that picture (it represents so much about you that made you special). I wish we got to meet in person, but you were taken too young.
~ I miss Gi. I miss talking to her all night. I miss reminiscing with her about the 2000s and the crazy things we did and how if we met back then we would be friends in real life before cancer. I am so glad I found you in a random health group on Facebook and connected you with the MBC community. You called me your guardian angel and now you are mine. I keep the silver angel up in my bedroom to remind me of you and our faith. I use the notebook you gave me to take medical notes so I have you there with me on difficult days. I miss laughing with her & holding up hope with her. I miss her tough language, which always got her point across and would make me laugh & make me happy that she didn't judge me for my garbage mouth. I wish we got to meet in person, but you were taken too young.
~ I miss Adrienne. I miss the woman who taught me to throw a hail Mary with my treatment and to never give up on trials. I miss talking medications with her and she always was so ahead of the current awareness, she always was looking for the best and better ways to kill our cancer. I miss how beautiful she was inside and out. I always felt like you were just so smart and knew so much about the trials and you helped me become more of an advocate for trials for myself and not get scared to take the risk to go outside the box.
~ I miss Sheryl. I miss laughing with her. I wish I knew her longer. I miss talking our social work journeys together. She told me to be aware of how I feel physically always and to not ignore symptoms. She told me she would haunt me if I forgot that, she did. I truly believe Sheryl's angel was with me when I was fading in & out before they found the brain tumor in the ER. She also brought her wonder mother into my world, she is an amazing woman and is so encouraging & does so much for Sheryl's Grant at Rutgers for the MSW program and also for BRCA education. I am glad she gave me your bracelet that I can wear on days I need you the most Sheryl, to remind myself of you.
~I miss my Aunt, my godmother and one of my first friends on Earth. I have just begun to process the loss of my aunt and she has almost been gone for 2years. I did not want to talk in detail about it and if I began to cry when I started to talk about it or when people asked me about her, I would change the subject or shut down. I think it is time to start talking about her on my blog to help me with the grief process. I miss calling her after a horrible oncology day. I miss having a family member who got what it was like to live with terminal cancer. I miss knowing that she was there for my mother as a best friend & support to help my mom deal with my cancer. She encouraged us to go to big cancer centers for second opinions. She also helped me find humor in the doctors appointments and surgeries & showed me how to walk out of even the most crappiest situations with a smile. She was always busy doing something, which amazed me because she was ALWAYS on chemotherapy as there are no other options with terminal Ovarian Cancer. She would always encourage me to watch some new show and I would then get hooked on it. She inspired me to start planting my own flowers & this summer is the first time since her passing that I planted flowers, it was too hard for me to plant a hibiscus or any plant with you not around. I miss living with her. I just remember how kind she and my uncle were (are) and let me live with them after graduate school to shorten the commute to my first job as a licensed social worker. She had me riding my bike all summer around the beach, going on little adventures with her and my uncle so I would not do what I normally do, and getting me and Kyle to love Ocean City MD as much as you did. I have not been back to Ocean City MD or Wildwood since we lost you, but I told myself I will go back and do something you would have loved to do down there. I did not forget Greg, I promised you I would never forget my uncle. I am glad the last time I saw you, I was able to crawl into that hospital bed and hug you. I wish I could have taken the pain from you. I am glad you are no longer in pain. I am glad you taught me to be strong despite how sad, angry, and scared this disease can make me. You taught me to keep my head held up high despite what my cancer did, what treatment I was on, or how bad I may feel. Thank you for helping me and my mother learn to find at least 1 positive thing about bad cancer news, my mom continues to help me find that positive, which helped so much over this last year of not ideal medical news & new and scary medical procedures. I love you. You were totally there at my wedding like Uncle Greg said, but I know you are with him daily and do not leave his side. <3
I have lost so many other women I have connected with in the online cancer support groups I partake in and also have met at Cancer conferences. The ladies I wrote about today are the most significant friends I have lost from 8/2015 - 5/2017. These loses have not been easy, but I am grateful for my friends, my husband, and my family for being there to talk to when you all moved onto your next phase of existence. I am grateful that you all have connected me to new ideas, new people, and new experiences. I hate that cancer took you from us, but cancer will never take what you have helped give me in return.
I hope one day someone may say the same thing about me. I hope I am helping others and not being selfish. I just want to inspire someone to be strong to do their best and to hope, but I am not sure if I have made that impact on anyone yet.
I miss my sister-friends who have passed from terminal breast cancer, most were under 40.
I miss my aunt who passed from terminal ovarian cancer. 70% of women with early stage ovarian cancer will recur and 14,080 women will die in 2017 from Ovarian Cancer.
I have lost so many amazing women gone because of a unrelenting evil disease, cancer, which on some days it makes me sad. I have less friends to call about cancer and less friends who "get it." It has become incredibly hard to get close to any new people with cancer, but I am sure each one of you would tell me that by closing myself off from other cancer sisters, I may miss the opportunity to have another friend that will enlighten my life & hopefully I will do the same to theirs.
I have learned so much from each any every one of them I hold dear to my heart.
~ I miss Aziza. I love you my Breastie - you know best friends with breast cancer, we all came together a group of 6 of us who text daily and will be friends forever. You taught me to let go and have fun. You were my fitness sister before and after our cancer spread. You taught me to not give up on what I love to do despite having Stage 4 cancer - so I traveled with you & with my family and friends, I kept working out within my limits, I kept working until I could not provide my clients the care I felt they deserved, and I got aquainted with cooking, small art projects, and the various new crafty hobbies you can drown yourself in at Michaels (for you it was candles, soap and jewelry making, for me it was art, crochet, and home decorating. You taught me to stand up for myself, to be eloquent when expressing my opinions, and for living life despite what the stats say. I wanted to call you everyday, I miss you and your infectious laugh. I am so glad our Breasties gave me a matching necklace that represents us and your angel wings watching over us.I could go on and on, but I will just end up a puddle of tears & I know you would not want me wasting a good day crying. I wish I could have seen you this past winter, but my health got in the way, I know you & Jon understood that, but I truly just wanted to laugh with you in person. Thank you for bringing your Breasties into your wedding and having us meet all your family & friends. You truly have so many genuine people who love you and still love you to this very second and beyond.
~ I miss Maryanne. I miss my chemo mother, my nighttime chatting buddy, my friend who hoped for research and cutting edge treatment, and to make medical changes anytime I do not feel comfortable and to never settle. She inspired us to choose where we went for my honeymoon, inspired me to change oncologists in 2015 when my first doctor & I were no longer a good fit, and she inspired me to advocate for our disease (well as much as I could through writing my blog, writing for LBBC, or taking interviews for various MBC websites.
~ I miss talking makeup and animals and our significant others with Kim. I miss her sending me pictures of her animals and her having fun at baseball games with Alex. I am glad she had me meet Alex online. He is an amazing guy & Kyle and I hope to make our trip to California to visit him & also see Aziza's husband Jon. Everyday, I look at the bracelet she made me with my all time favorite hockey team the Rangers. I think of how thoughtful and caring you were and how excited you were to send me that surprise. You loved sending little gifts. You loved your pink shoes and leggings that you would wear to chemo. You were never angry at the pink ribbon, you felt it was part of our sisterhood. Also I will never forget how gorgeous you look in 2017's Haus of Volta calendar, you radiated with your pink hair and that adorable teal dress. I wish I could have made the trip to do the shoot with you, but I think your beauty with your VW Bug is perfect in that picture (it represents so much about you that made you special). I wish we got to meet in person, but you were taken too young.
~ I miss Gi. I miss talking to her all night. I miss reminiscing with her about the 2000s and the crazy things we did and how if we met back then we would be friends in real life before cancer. I am so glad I found you in a random health group on Facebook and connected you with the MBC community. You called me your guardian angel and now you are mine. I keep the silver angel up in my bedroom to remind me of you and our faith. I use the notebook you gave me to take medical notes so I have you there with me on difficult days. I miss laughing with her & holding up hope with her. I miss her tough language, which always got her point across and would make me laugh & make me happy that she didn't judge me for my garbage mouth. I wish we got to meet in person, but you were taken too young.
~ I miss Adrienne. I miss the woman who taught me to throw a hail Mary with my treatment and to never give up on trials. I miss talking medications with her and she always was so ahead of the current awareness, she always was looking for the best and better ways to kill our cancer. I miss how beautiful she was inside and out. I always felt like you were just so smart and knew so much about the trials and you helped me become more of an advocate for trials for myself and not get scared to take the risk to go outside the box.
~ I miss Sheryl. I miss laughing with her. I wish I knew her longer. I miss talking our social work journeys together. She told me to be aware of how I feel physically always and to not ignore symptoms. She told me she would haunt me if I forgot that, she did. I truly believe Sheryl's angel was with me when I was fading in & out before they found the brain tumor in the ER. She also brought her wonder mother into my world, she is an amazing woman and is so encouraging & does so much for Sheryl's Grant at Rutgers for the MSW program and also for BRCA education. I am glad she gave me your bracelet that I can wear on days I need you the most Sheryl, to remind myself of you.
~I miss my Aunt, my godmother and one of my first friends on Earth. I have just begun to process the loss of my aunt and she has almost been gone for 2years. I did not want to talk in detail about it and if I began to cry when I started to talk about it or when people asked me about her, I would change the subject or shut down. I think it is time to start talking about her on my blog to help me with the grief process. I miss calling her after a horrible oncology day. I miss having a family member who got what it was like to live with terminal cancer. I miss knowing that she was there for my mother as a best friend & support to help my mom deal with my cancer. She encouraged us to go to big cancer centers for second opinions. She also helped me find humor in the doctors appointments and surgeries & showed me how to walk out of even the most crappiest situations with a smile. She was always busy doing something, which amazed me because she was ALWAYS on chemotherapy as there are no other options with terminal Ovarian Cancer. She would always encourage me to watch some new show and I would then get hooked on it. She inspired me to start planting my own flowers & this summer is the first time since her passing that I planted flowers, it was too hard for me to plant a hibiscus or any plant with you not around. I miss living with her. I just remember how kind she and my uncle were (are) and let me live with them after graduate school to shorten the commute to my first job as a licensed social worker. She had me riding my bike all summer around the beach, going on little adventures with her and my uncle so I would not do what I normally do, and getting me and Kyle to love Ocean City MD as much as you did. I have not been back to Ocean City MD or Wildwood since we lost you, but I told myself I will go back and do something you would have loved to do down there. I did not forget Greg, I promised you I would never forget my uncle. I am glad the last time I saw you, I was able to crawl into that hospital bed and hug you. I wish I could have taken the pain from you. I am glad you are no longer in pain. I am glad you taught me to be strong despite how sad, angry, and scared this disease can make me. You taught me to keep my head held up high despite what my cancer did, what treatment I was on, or how bad I may feel. Thank you for helping me and my mother learn to find at least 1 positive thing about bad cancer news, my mom continues to help me find that positive, which helped so much over this last year of not ideal medical news & new and scary medical procedures. I love you. You were totally there at my wedding like Uncle Greg said, but I know you are with him daily and do not leave his side. <3
I have lost so many other women I have connected with in the online cancer support groups I partake in and also have met at Cancer conferences. The ladies I wrote about today are the most significant friends I have lost from 8/2015 - 5/2017. These loses have not been easy, but I am grateful for my friends, my husband, and my family for being there to talk to when you all moved onto your next phase of existence. I am grateful that you all have connected me to new ideas, new people, and new experiences. I hate that cancer took you from us, but cancer will never take what you have helped give me in return.
I hope one day someone may say the same thing about me. I hope I am helping others and not being selfish. I just want to inspire someone to be strong to do their best and to hope, but I am not sure if I have made that impact on anyone yet.
Sunday, July 30, 2017
Where did Caitlin Go Again?
Do not worry, I am alive. I just have been trying to spend less time on social media and on my laptop and more time reading and trying to stay busy in the house or outside the home with family & friends. Just some brief updates before I go on a long tirade about my medical issues. 1. On 7/29, I hit my 4yr meta-versary with metastatic breast cancer. 2. On 7/30, I hit my 7yr anniversary since finding the original breast lump. 3. I am moving into my 8th year of living with cancer and being on some sort of cancer treatment. 4. I started my 10th line of treatment on 7/28 and I just want some cancer to go away for a period of time. THIS IS THE SCARIEST MOST DEPRESSING PART IS THAT I AM JUST GETTING MORE CANCER EVERY MONTH SINCE 7/2016. 5. My medical oncologist is moving to Memorial Sloan Kettering in NYC and CT. I will be transferring my medical oncology care with her at Memorial Sloan Kettering in NYC, which also allows me to get my scans. If I do get some regression or stability on my current treatment, I can get my second dose of treatment in NJ (10min from our home) to save us the trip into NYC. 6. My radiation oncology & neurology team will remain at Cornell since they are the best & I trust them. So ONTO the medical changes that have happened in the last 30days.
Let's start with how things have been since my last post. I have more energy since kicking down pneumonia's butt while on chemo with stage 4 cancer. I had two more rounds of Navelbine in June & July and my tumor markers continued to rise. I also had my scheduled follow-up Brain MRI on 7/3 to check on the tumors that were radiated in April. Changes in my medical care will also happen, which will be bitter sweet. Since the tumor markers rose, I also went for an ASAP CT Scan on 7/18.
I will start with how Brain MRI went. I went to get my Brain MRI on 7/3, which was supposed to be reviewed that same day but both my Neurosurgeon and Radiation Oncologist were out on vacation, but I was scheduled to see both of them on 7/10 along with my Oncologist. It was a big day of lots of doctors. On 7/10, I saw my Neurosurgeon first that following Monday and learned good & bad things. GOOD NEWS was that my Brain MRI showed that all the spots that were radiated are either not visible or shrinking. Also the tumor bed from my Craniotomy continues to be without cancer. BAD NEWS is that there was a 1cm new tumor that was in my left Temporal Gyrus and had slight edema, so I had to go on a low dose of steroids and get myself prepared for more radiation. The more bad news was that when the bigger tumors vanished from Stereotactic Radiotherapy Surgery (SRS using Cyber Knife), they found 10 super tiny spots that apparently have been there since November. I was really pissed, but they did explain that my brain was shifted right, swollen, and had many 1cm tumors that were literally in clusters of 3-4 tumors that created significant edema which were hard to see in the November MRI but were a teeny tiny bit more present in January's MRI when my Neurosurgeon reviewed my past MRIs. My Neurosurgeon said I have 4 options ~ 1. Whole Brain Radiation (WBR) while I am on chemotherapy, on my off week from Chemotherapy. 2. More SRS at least to the new tumor with edema & possibly more to the tiny ones if my Radiation Oncologist felt it would be possible. 3. Change my chemotherapy or go on a trial for Brain Mets. 4. Do nothing and stay on my chemo. My doctor said that at the end of the day its my choice, but he is going to conference in my Radiation Oncologist and Medical Oncologist to come up with the best plan for me. I like how Dr. Ramakrishna lays out all options even the most ridiculous - "do nothing". I am never going to opt for "doing nothing," but he is fully aware some people do make that choice. I was more upset having to hear WBR as an option again, BUT I know that at the end of the day this decision would probably be one that I may not get the option to say NO to knowing how my Radiation and Medical Oncologist work when they feel things are urgent. My Neurosurgeon said things are not urgent, but he also did not read my body CTs and if he did its not his area of expertise but my Oncologists.
Off we went to my Radiation Oncologist and I was trying my best not to fixate or cry about potentially needing WBR as being my only option. It scares the ever living crap out of me and you only get one shot at WBR...so if it comes back worse, you are up shits creek without at paddle. Well apparently WBR was off the table and my team of three doctors said that I will NOT have WBR. My Radiation Oncologist wanted to do SRS on the 1cm spot, keep a super close eye on those 10 tiny spots which we may target with SRS (Cyber Knife, what I have been doing) or Gamma Knife (SRS but you can get a bunch of spots in one day literally up to 30 depending on who is doing the radiation), but she believed that we may be able to avoid more radiation in the near future if we go outside the box with my systemic (medical oncology) treatment. My Radiation Oncologist said "You are getting SRS again for 1 session and you are going on Opdivo."
This is where the WHY questions start to flow in. My Radiation Oncologist also made me promise this past November that while I am under her care if she tells me I have to do something I do it, but can ask any questions. I agreed to that, so technically that is literally part of our doctor-patient verbal agreement. I also know she is super smart and would not put me in harms way...she is the doctor who sat with me, held my hand in a CT scan, and hugged me after I was scared from my first mask fitting.
Anyways, so I started to ask why Opdivo, which is a immunotherapy and is not FDA approved for breast cancer, yet. (I am going to post a link about my Radiation Oncologist's research in immunotherapy and radiation, but I will try to explain what she told me first.) My doctor said that her first reason is that people who have had radiotherapy where the tumor is still active but maybe stable or just radiated respond better to immunotherapy and have a longer life span than people who had 0 history of any radiotherapy. I have had a lot of radiotherapy, I am the female Mr. Burns, so I would be an ideal candidate to receive Opdivo versus someone who has only had a history of using chemotherapy in a Metastatic/Stage 4 setting.
Let's start with how things have been since my last post. I have more energy since kicking down pneumonia's butt while on chemo with stage 4 cancer. I had two more rounds of Navelbine in June & July and my tumor markers continued to rise. I also had my scheduled follow-up Brain MRI on 7/3 to check on the tumors that were radiated in April. Changes in my medical care will also happen, which will be bitter sweet. Since the tumor markers rose, I also went for an ASAP CT Scan on 7/18.
I will start with how Brain MRI went. I went to get my Brain MRI on 7/3, which was supposed to be reviewed that same day but both my Neurosurgeon and Radiation Oncologist were out on vacation, but I was scheduled to see both of them on 7/10 along with my Oncologist. It was a big day of lots of doctors. On 7/10, I saw my Neurosurgeon first that following Monday and learned good & bad things. GOOD NEWS was that my Brain MRI showed that all the spots that were radiated are either not visible or shrinking. Also the tumor bed from my Craniotomy continues to be without cancer. BAD NEWS is that there was a 1cm new tumor that was in my left Temporal Gyrus and had slight edema, so I had to go on a low dose of steroids and get myself prepared for more radiation. The more bad news was that when the bigger tumors vanished from Stereotactic Radiotherapy Surgery (SRS using Cyber Knife), they found 10 super tiny spots that apparently have been there since November. I was really pissed, but they did explain that my brain was shifted right, swollen, and had many 1cm tumors that were literally in clusters of 3-4 tumors that created significant edema which were hard to see in the November MRI but were a teeny tiny bit more present in January's MRI when my Neurosurgeon reviewed my past MRIs. My Neurosurgeon said I have 4 options ~ 1. Whole Brain Radiation (WBR) while I am on chemotherapy, on my off week from Chemotherapy. 2. More SRS at least to the new tumor with edema & possibly more to the tiny ones if my Radiation Oncologist felt it would be possible. 3. Change my chemotherapy or go on a trial for Brain Mets. 4. Do nothing and stay on my chemo. My doctor said that at the end of the day its my choice, but he is going to conference in my Radiation Oncologist and Medical Oncologist to come up with the best plan for me. I like how Dr. Ramakrishna lays out all options even the most ridiculous - "do nothing". I am never going to opt for "doing nothing," but he is fully aware some people do make that choice. I was more upset having to hear WBR as an option again, BUT I know that at the end of the day this decision would probably be one that I may not get the option to say NO to knowing how my Radiation and Medical Oncologist work when they feel things are urgent. My Neurosurgeon said things are not urgent, but he also did not read my body CTs and if he did its not his area of expertise but my Oncologists.
Off we went to my Radiation Oncologist and I was trying my best not to fixate or cry about potentially needing WBR as being my only option. It scares the ever living crap out of me and you only get one shot at WBR...so if it comes back worse, you are up shits creek without at paddle. Well apparently WBR was off the table and my team of three doctors said that I will NOT have WBR. My Radiation Oncologist wanted to do SRS on the 1cm spot, keep a super close eye on those 10 tiny spots which we may target with SRS (Cyber Knife, what I have been doing) or Gamma Knife (SRS but you can get a bunch of spots in one day literally up to 30 depending on who is doing the radiation), but she believed that we may be able to avoid more radiation in the near future if we go outside the box with my systemic (medical oncology) treatment. My Radiation Oncologist said "You are getting SRS again for 1 session and you are going on Opdivo."
This is where the WHY questions start to flow in. My Radiation Oncologist also made me promise this past November that while I am under her care if she tells me I have to do something I do it, but can ask any questions. I agreed to that, so technically that is literally part of our doctor-patient verbal agreement. I also know she is super smart and would not put me in harms way...she is the doctor who sat with me, held my hand in a CT scan, and hugged me after I was scared from my first mask fitting.
Anyways, so I started to ask why Opdivo, which is a immunotherapy and is not FDA approved for breast cancer, yet. (I am going to post a link about my Radiation Oncologist's research in immunotherapy and radiation, but I will try to explain what she told me first.) My doctor said that her first reason is that people who have had radiotherapy where the tumor is still active but maybe stable or just radiated respond better to immunotherapy and have a longer life span than people who had 0 history of any radiotherapy. I have had a lot of radiotherapy, I am the female Mr. Burns, so I would be an ideal candidate to receive Opdivo versus someone who has only had a history of using chemotherapy in a Metastatic/Stage 4 setting.
I asked why Opdivo and not any other immunotherapy trials with radiation & the two she would recommend one has WBR and she feels I am "not there yet" and another trial she does not feel works with the blood brain barrier as well as Opdivo. My doctor said that Opdivo seems to cross the Blood Brain Barrier better than Keytruda, but they are similar drugs as they work similarly but one crosses into the Brain better. I said OK. I agreed to go on Opdivo and to the SRS & she reported that my oncologist was fully aware of this and is on board and I can discuss with her later that day at my Oncology/Chemotherapy appointment.
READ THIS Article (within hyperlink) its the SUPER SMART REASON WHY SHE WANTS ME TO DO THIS:
I left the radiation oncology appointment feeling a bit of relief that I am able to do more SRS, but scared because I knew of no one who was on Opdivo and the people I did know on immunotherapy had no history of radiation in a metastatic setting or they were on Keytruda. I literally was becoming a case study based on results seen in my radiation oncologist's clinical trials that she has been doing for years.
Off I went to meet with my Medical Oncologist, who never works Mondays in the office & honestly I was surprised she was able to make the time to see me (I was her only patient scheduled in the office that day). This is why she is awesome, she makes time when her patients truly need it. My medical oncologist and I discussed adding Opdivo which she was on board with, but most likely my insurance will deny it and we will have to apply for Patient Assistance Access through Bristol Myers Squibb to get me Opdivo, but she will have her staff work on it. Opdivo or any immunotherapy also tends to respond in people with multiple cancer related mutations in their DNA. Lucky for me I have about 15 if you combine both Foundation Medicine reports and the DNA analysis from Cornell that was done. Apparently the more screwed up your cancer is, the better chance you have at responding to immunotherapy. This made me feel less scared, I had my Radiation Oncologist's research behind me and I also have a mutated Cancer that just may need immunotherapy to kill it down.
Long story short, my tumor markers did rise & I was sent for a CT scan the following week after I had Navelbine. The CT showed progression in my peritoneal lining (abdomen lining) and a little bit of growth in my pleural lining. Good news is Lungs are not affected and Liver tumors did not grow nor did the lymph nodes at my clavicle. The progression in my abdomen is quite scary and odd. I also have not been affected by it at all, which is also odd. I also have no ascites, which is odd and usually does happen when someone has cancer in the abdominal lining. My cancer goes places most breast cancers do not go and I seriously have ER+ Invasive Ductal Breast Cancer, which usually is slow growing and goes to the standard places - bone, liver, and lung.
Since I had progression on Navelbine, we decided to move forward with the Opdivo alone (not with Yervoy) based on my Radiation Oncologist's suggestion and her awareness of how immunotherapy works & my doctors experience working with both in the clinical/research setting. My insurance did deny the Opdivo because it is not FDA approved for Breast Cancer. With the help of my doctors' staff, I got approval for Opdivo from Bristol Myers Squibb to get my medication for free.
I had my first dose of Opdivo on 7/28. My doctor is on vacation for 3 weeks, so my nurse practitioner and another oncologist (who has worked with Opdivo for years) did my physical before I get immunotherapy for the first time & they also answered all our questions about the medication. Granted I was still nervous, but they calmed my worries. Off I went to get IMMUNOTHERAPY, which is something I kept hoping that maybe one day I would get and it would work on my cancer.
What is Opdivo? Check out this video to learn about Opdivo.
Opdivo is given every other week via IV for 1 hour. It does not have any premedication. You do get your blood drawn weekly and we have to watch my thyroid levels. Opdivo can affect the thyroid and I already have hypothyroidism. The side effects from Opdivo I was told are "tolerable and you mostly will have fatigue, joint and bone pain, and possible constipation."
How has my experience been with Opdivo this weekend? I have had hot flashes and chills on and off, which is quite unpleasant because I will need an ice pack to cool me off and a heating pad to warm me up. I am not 100% sure if my fatigue is the same it was pre-immunotherapy, but I have minimal motivation to do much beyond basic chores. I also do not want to leave the house, have 0 motivation to cook, and I feel like showering is an effort. This "fatigue" could clearly be situational depression because of EVERYTHING that has happened with my health over the last year. I am not sure if it started the day after I got Opdivo or if it was progressing to this level of fatigue. I should ask Kyle later... Opdivo does cause horrible Joint & Bone pain, which improves if you are moving, but seriously I cannot be walking laps around my house all day without needing to rest. Although while moving I feel none of the pain, the pain does get worse after moving because now my muscles are tight. So far those are the only side-effects I have had thus far.
I have no idea Opdivo is working on my cancer yet. I will not know until I have been on this therapy for at least three months as it causes an inflammation response at first (which affects tumor markers) and then you see a response. That is a longish time to wait to see if something is working when you have a lot of cancer, but my only options were throw more chemotherapy at me, because no trials could accept me due to having active untreated brain mets. Right now, I am just hanging on with a rope of hope and trying not to think about how my last two chemotherapies stopped working or did not work at all within 9weeks. I am trying to focus on the positives that my doctors told me about Opdivo and my individual situation with Breast Cancer. I am trying to remember the documentary VICE did in 2014 about immunotherapy and cancer & I never expected for it to be given to solid tumor patients or people who did not have a PD-1 or PD-L1 gene... apparently THAT gene does not matter much.
Off I go into uncharted territory with three tumors in my small abdomen that I cannot feel and no one else can feel, with lungs floating in a little pleural fluid, yet none of the airways are obstructed (thank god), and with a brain that hides tumors. I need something to work to give me a "long run", which is what my medical team said. They said that we will go outside the box and give me something they have seen give the people with the worst prognosis a long run. I want a long run and I hope & pray nightly that maybe just maybe Opdivo will be the one.
Saturday, June 24, 2017
The Story of Sisyphus... AKA Caitlin & Cancer
In my 7yrs of being a Cancer patient, I have felt like Sisyphus of Greek Mythology. In short, Sisyphus was forced for eternity to push a giant boulder up a Mountain only to watch it come rolling back down and hit him, forcing him to continue the pushing the boulder - being hit by a boulder for eternity. Lately I have been thinking, I am Sisyphus, but I need a flat top to form on my crappy mountain, because I am tired from pushing this boulder and my body and mind are beaten from being hit from the boulder on its way down. I keep hoping that one day my Boulder would stay on my Mountain for a little bit to give me a breather, a break, and a sense of recovery. This past week was the worst episode I had with my boulder (cancer) and mountain (my life) in a long time. I was losing faith that my mountain would ever build a ledge to give me rest and recovery and strength.
Attempt 1 at Pushing my Boulder up the Mountain:
Around week 2 of Pnuemonia, I was given the orders from a Pulmonary Doctor to take Mucinex, which resulted in more coughing, more phlegm, and over time I would get coughing fits and only foamy white spit would come out. The coughing would turn into fits, I couldn't breathe, I would get anxious and I would puke up foamy spit and sometimes bile and sometimes food.
Last week (6/14), I told my doctor & she suggested to cut out the Mucinex. Despite her recommendations, I was still spitting the foamy white spit and was congested, so back goes the Mucinex. I was told to cut Mucinex down to 1x a day with my Nebulizer 1x day. Unfortunately, the coughing fits resumed, the spitting pukes started and I was not getting any relief. I honestly was sick and tired of Mucinex, Pnemonia, Coughing, Phelgm, Spitting foaming stuff, and hacking coughing puking.
Every puke fit was due to coughing white foamy spit/phlegm, panic, and more coughing and vomit. There was a clear pattern here Coughing was irritating my stomach and it needed to stop. By this past Monday, these fits were happening once daily. I was nauseated, told my doctor/APN over email & they explained we will address it when I come in for chemotherapy on Wednesday. I was anxious that I would be denied chemotherapy because of these coughing fits, because of the nausea that now has resulted from two weeks of nonstop coughing. I also lost more weight and was anxious about getting that lecture from my doctor. All I wanted to get was my chemotherapy, my first full dose of Navelbine without Pneumonia so my immune system can focus on killing the cancer and no other pathogen.
Attempt 2 at Pushing my Boulder up the Mountain:
The day of chemotherapy, I had a coughing-puking fit in the morning, could not eat, was nauseated, and felt like absolute crap. I failed my doctor AGAIN by not gaining weight, because with the coughing and spitting, my food was not settling well. My mom told me my skin was grey. I knew I was dehydrated from not eating, drinking and the coughing fit
We met with my medical team and explained all of the above. Good news is I was told that they will get control of the cough by giving me cough medication at night. Bad news was and I was told that the constant coughing has also led to my stomach becoming irritated and I was coughing and spitting up acid. My Acid Reflux went into full speed and the Pepcid I usually take is no longer working. My doctor gave me Nexium, which should stop the coughing fits and spitting up of stomach acid, but will take 1-4 days to work, so I may not feel better for a few days. They gave me a big bag of fluid to address my dehydration, my usual and reliable pre-medication and anti-nausea Aloxi and my full dose of Navelbine. I was advised to take my Zofran & Ativan combo every 6-8hours to ward off nausea, take the cough medication (which has narcotics), and Nexium, avoid dairy, take small sips of water, and be patient with myself when eating.
We left, I ate a little, we stocked my house up with plain foods & snacks and got me ready to bear down the hatches for probably another day pushing the "boulder" with no resolve.
Attempt 3 at Pushing my Boulder up the Mountain:
This is what we call the day after CHEMO. I want to reflect that for me a full dose of Navelbine is NO JOKE. IT IS NO JOKE WHEN YOU ALSO HAVE EXPLOSIVE GERD IN YOUR BELLY. DESPITE taking my medications this is how I spent my last two days.
I woke up at 4:30a holding the porcelin god and then again some other time that morning. I took my anti-nausea medications and laid down, they kinda worked, but I was mostly nauseated due to the metalic taste in my mouth given to me by chemotherapy. I was semi-functional that day, tired from all the sedating medication, in pain because Navelbine makes the nodes on my clavicle ache at a level 8 out of 10, and nauseated from the pukes & the taste in my mouth. Otherwise I napped, I nibbled, and I felt it was a normal chemo-recovery day minus the strange puke. I kept praying that the cough medication, anti-nausea, or Nexium would save me from puking coughing fits the next day.
Attempt 4 at Pushing my Boulder up the Mountain:
The second day after chemo I call DAY 2 and it is usually is the day from HELL. My first dose of FULL Navelbine I was in the ER with Pneumonia, which was another type of hell lol. I honestly had no idea what this day would bring. It brought a big reminder of what CHEMOTHERAPY can do to anyone at anytime of treatment. The chemotherapy took me to a DAY OF HELL. I woke up with the same coughing fits, vomiting like I had the day prior. The anti-nausea medications, cough medicine and Nexium still hadn't kicked in and I started to worry it never would work.
I spent most of my day on my couch in PJs, watching Netflix, sipping water, staring at a barely eaten box of plain animal crackers and an untouched cup of cheerios on my table. I laid there, my family worried about me and wanted to help, but honestly when someone is chemo-sick the most you can do is stare at them in pain, keep filling their water, and maybe change the channel on the TV for them. I wished that there was something someone could do to help. There was not anything anyone could do for me. I had to ride the shit wave. A shit wave I have no ridden this badly since 2011. Only time and patience would help me. If someone did come over to help, they could only stare at me or socialized and I had no energy to talk, host, play games or entertain another human. Honestly that would have made me feel like shit, because I did not have the energy in me to be social and I would feel bad because honestly there is not much people can do in the situation. Yes, I spent 5am - 8pm on my couch, alone, moving to the potty to the couch to the fridge for water to the couch.
THIS IS WHAT CANCER IS REALLY LIKE. IT DOESN'T GET EASIER ALWAYS AND SOME DAYS IT REALLY SUCKS.
In my loneliness, if I could not distract my mind with a nap or Netflix I became scared what would all this pain mean. Would this mean the cancer is taking more of me for colonization, is my body to weak to deal with this cancer, or is the chemo working. I had no answer to these questions. I had to put them aside and let time deal with it. I had to have faith that things will get better tomorrow.Attempt 5 at Pushing my Boulder up the Mountain:
Today is DAY 3, I feel human-ish. I have not coughed today at all, which is a HUGE blessing. I have no phlegmy pukes, which is a even bigger blessing. The Nexium is working! I have mild nausea, but my anti-nausea medication is affective & I am eating. I have a little more energy. I am doing what I can given the energy I do have today (which is not marathon runner energy), but it is putting away laundry and cleaning up little messes here and there energy, writing my blog, working on my wedding thank you cards, making my bed, showering, and even making myself an easy meal. I will take these small improvements. I will take what improvements I have for today, because yesterday I was a cocoon in a blanket on my couch most of the day. Finally my struggle lightened up a bit.
Today, the Boulder and I finally got that Ledge on The Mountain to stay put and for me to rest and get a break. How long will this break last? I do not know. No one knows what tomorrow will bring. I had no idea today I would feel better today, I just had faith that hopefully I would feel better and not worse with time.
For today I am slightly more energetic & I ate two small meals. I say thats a WIN in my day.
Tuesday, June 6, 2017
Even Superheros Have to Rest
If you know me, like know me know me, I am slightly obsessed with both the DC and Marvel Universe. Now I always loved the stories behind some heroes... not all were blessed with powers, some got them, some worked at them and even some who are "Gods" used their powers for good.
Ok, I am not exactly sure where I am going from here. BUT I always ask for Wonder Woman gear from my parents. I guess I feel like I was her, I was strong as all hell, I always stood up for what I believed in and I always saw myself and other women as equals to men. I also had brown hair and well felt like in my life, especially when dealing with cancer, I was wonder woman. I could stand up against any fight and still come back with the same strength, minor cuts, but I healed fast. (OK now I am getting to my point).
Most women in my world with metastatic disease cannot say that for 3yrs of living with cancer they ran sprints with a Pleural Effusion or could squat 280lbs after having almost every vertebrae in my spine radiated. I was a lucky woman living with Stage 4 Cancer, the disease affected my physical capabilities minimally and I could resume and continue my super strength despite where the disease decided to go, die, or stay. I also took 0 time off from exercise after my mastectomy, I literally was walking 2-3mi a day 4 days after surgery and was running 3-5mi 3x/week during chemotherapy during my early stage diagnosis. Crap I even have a page in my blog devoted to maintaining fitness while having surgery, chemotherapy and radiation.
This past winter & spring, I forgot that despite having Cancer and being referred to as having WONDER WOMAN STRENGTH, I may not always bounce back like Wonder Woman. I expected to have this same recovery after my Craniotomy last winter, because I WAS WONDER WOMAN. I believed I was unstoppable. The problem with that thinking is I expected to jump right back into what I was doing before my skull was cracked open. I forgot that despite having good physical fitness through all of my cancer journey that I still had to dial back and start from the lowest or slowest point up.
A Craniotomy is a big deal and honestly the fact that I have 100% of my faculties back after that surgery is a blessing in itself. But my thoughts can be over critical and stinky and down right mean to my own self. The truth was I finally was not able to bounce back. I felt like the person I was, that Wonder Woman was fading away. The truth was that I was fatigued, I had to walk slow, I was unable to multitask, and I felt defeated, broken, no longer a superhero. Cancer was going to beat me. I know you do not want to hear me say that, but it is how I felt. Also, I had radiation to my head for the first time, which is seriously a drain on energy. Then lets add my first IV chemotherapy in almost 6yrs, which btw is a whole other level of exhaustion versus oral chemotherapies or anti-hormonals, which I had been taking for 5.5yrs. Lets top that all of with an infection in my Craniotomy wound 6 weeks later, which only made me feel more and more defeated.
After my Craniotomy, I had hope that I would be side-lined for maybe 4 weeks and get slowly back on the gym horse. Even after the second head surgery, I did not want to give up, so I literally waited the two weeks my doctors asked to workout. I walked the malls with Kyle, I set up my road bike inside, and I started doing Yoga again. I did this for about 3 weeks until the Tegaderm Tape keeping the IV in my port for my 3x/day antibiotic infusions kept melting off. I was frustrated and just really stopped doing anything but the walking as it did not make me sweat or ruin the seal around my port IV.
This is where the negative thinking crept right back in. I was slowly fading away from my hope that I could be WONDER WOMAN again. I got sad, I lost a bunch of weight and a lot of it was muscle I had built over the years. So now, I literally am 25lbs lighter than I was a year ago. I lost this weight in about 3 weeks mostly I am assuming it was due to the inability to workout, the cancer getting emotionally and physically draining, a lack of appetite due to the chemo, lack of exercise, and just my sad, stinky, hopeless thinking. I guess I got thin for my wedding without trying, but I had to get my dress taken in three times within 30days of my wedding (THAT IS NOT HEALTHY). No level of emotional distress, physical health decline, or stress should have led to that quick of a weight loss, but it happened. In the cancer world they call this, Cancer Cachexia, which is the loss of appetite due to cancer tumors release destructive proteins which tell cells to produce an inflammatory reaction which can cause a loss of appetite. These proteins can also cause muscle atrophy and can be the cause of altered taste changes, among many other problems.
So the reality is I am no superhero. I am not indestructible. I am not impervious to pain, sadness, set backs, or illnesses beyond my cancer. The reality is I am a strong person, but physically my strength is being used in other ways - to recover from this pneumonia, to fight this dumb cancer, and to accept that yoga & walking are perfectly OK forms of exercise on the days I feel capable of exercising.
The last 7 months have been tiring. A craniotomy 2x is no joke. Chemotherapy IV is no joke especially when you progressed through two different Chemotherapies in 7mo. Radiation 2x to my head was not easy. HONESTLY, most people still would not even think of gardening when recovering from pneumonia. BUT I did that because I wanted to. It tired me out. You know why??? Because I am sick. I have been sick since 2010, but it was easy to hide when my treatments were not needed to be dripped into me via a port or when I had hair and not a wig.
This is where I think my mind hurt me... I was in denial about how serious Stage 4 cancer can be. I see this in some newbies in my support group & honestly I hope they never wake up in an ICU accepting that they are sicker than they thought. I hope this blog helps all my Stage 4 sisters and even early stage sisters realize that we are sick. If we are sick, it is ok to rest, it is ok to have set backs, and it is ok to look sick.
Today's lesson is that I never accepted that I was sick and I think that was the problem. I held myself to be WONDER WOMAN. I felt if I could still do the normal, look normal, then I wasn't sick. This kept me hopeful, but in serious denial about how bad things could get for me. It did not hit me until Nov 14, 2016 waking up in NYC in an ICU that I WAS SICK WITH CANCER AND THIS WAS REAL AND SERIOUS. I can say I have lived with cancer since 2010, but the last 7mo I have finally been forced to accept, deal, and cope with what that really means.
In therapy I have learned that COPING means that:
1. Resting is not weakness.
2. Disability is not the end, but a beginning to find something new & something that makes me happy.
3. My hair is replaceable, my life is not.
4. I will never have to worry about dieting ever... I am embracing the thin.
5. Every day is a blessing and despite how bad a day could seem, there can be 1-2 good things in that bad day. I have to force myself to find this sometimes.
6. WE CANNOT PLAN BEYOND TODAY. Planning for tomorrow is never guaranteed.
7. We CAN plan for tomorrow to have something to look forward to, but also be willing to accept that cancer or illness may get in the way of those plans.
8. Start to place less value or mental concern on things like - money, what others think, and my internal desire to be the perfect cancer patient.
Ok, I am not exactly sure where I am going from here. BUT I always ask for Wonder Woman gear from my parents. I guess I feel like I was her, I was strong as all hell, I always stood up for what I believed in and I always saw myself and other women as equals to men. I also had brown hair and well felt like in my life, especially when dealing with cancer, I was wonder woman. I could stand up against any fight and still come back with the same strength, minor cuts, but I healed fast. (OK now I am getting to my point).
Most women in my world with metastatic disease cannot say that for 3yrs of living with cancer they ran sprints with a Pleural Effusion or could squat 280lbs after having almost every vertebrae in my spine radiated. I was a lucky woman living with Stage 4 Cancer, the disease affected my physical capabilities minimally and I could resume and continue my super strength despite where the disease decided to go, die, or stay. I also took 0 time off from exercise after my mastectomy, I literally was walking 2-3mi a day 4 days after surgery and was running 3-5mi 3x/week during chemotherapy during my early stage diagnosis. Crap I even have a page in my blog devoted to maintaining fitness while having surgery, chemotherapy and radiation.
This past winter & spring, I forgot that despite having Cancer and being referred to as having WONDER WOMAN STRENGTH, I may not always bounce back like Wonder Woman. I expected to have this same recovery after my Craniotomy last winter, because I WAS WONDER WOMAN. I believed I was unstoppable. The problem with that thinking is I expected to jump right back into what I was doing before my skull was cracked open. I forgot that despite having good physical fitness through all of my cancer journey that I still had to dial back and start from the lowest or slowest point up.
A Craniotomy is a big deal and honestly the fact that I have 100% of my faculties back after that surgery is a blessing in itself. But my thoughts can be over critical and stinky and down right mean to my own self. The truth was I finally was not able to bounce back. I felt like the person I was, that Wonder Woman was fading away. The truth was that I was fatigued, I had to walk slow, I was unable to multitask, and I felt defeated, broken, no longer a superhero. Cancer was going to beat me. I know you do not want to hear me say that, but it is how I felt. Also, I had radiation to my head for the first time, which is seriously a drain on energy. Then lets add my first IV chemotherapy in almost 6yrs, which btw is a whole other level of exhaustion versus oral chemotherapies or anti-hormonals, which I had been taking for 5.5yrs. Lets top that all of with an infection in my Craniotomy wound 6 weeks later, which only made me feel more and more defeated.
After my Craniotomy, I had hope that I would be side-lined for maybe 4 weeks and get slowly back on the gym horse. Even after the second head surgery, I did not want to give up, so I literally waited the two weeks my doctors asked to workout. I walked the malls with Kyle, I set up my road bike inside, and I started doing Yoga again. I did this for about 3 weeks until the Tegaderm Tape keeping the IV in my port for my 3x/day antibiotic infusions kept melting off. I was frustrated and just really stopped doing anything but the walking as it did not make me sweat or ruin the seal around my port IV.
This is where the negative thinking crept right back in. I was slowly fading away from my hope that I could be WONDER WOMAN again. I got sad, I lost a bunch of weight and a lot of it was muscle I had built over the years. So now, I literally am 25lbs lighter than I was a year ago. I lost this weight in about 3 weeks mostly I am assuming it was due to the inability to workout, the cancer getting emotionally and physically draining, a lack of appetite due to the chemo, lack of exercise, and just my sad, stinky, hopeless thinking. I guess I got thin for my wedding without trying, but I had to get my dress taken in three times within 30days of my wedding (THAT IS NOT HEALTHY). No level of emotional distress, physical health decline, or stress should have led to that quick of a weight loss, but it happened. In the cancer world they call this, Cancer Cachexia, which is the loss of appetite due to cancer tumors release destructive proteins which tell cells to produce an inflammatory reaction which can cause a loss of appetite. These proteins can also cause muscle atrophy and can be the cause of altered taste changes, among many other problems.
I was broken, I was no longer Wonder Woman, but Olive Oil. Honestly my negative self-talk and view of this weight loss is enough to deal with. BUT People have been on my case about what I eat, how much I weigh, etc. Honestly, I know people care and mean well, but it has only made me more scared, more self-critical about the weight loss in general, and more hopeless that I won't ever get my fit, Wonder Woman body back. This is why it has become a problem that I saw myself as Wonder Woman. I hold myself to THAT standard of perfection constantly and honestly, I am not a person made from Zeus, I am human, I can break and sometimes I have to accept that I am also living with a terminal illness. I never accepted my disease for what it REALLY IS.
BTW NOSY PEOPLE WHO I NOW WANT TO STOP OBSESSING ABOUT MY WEIGHT - I HAVE BEEN EATING AND CANNOT GAIN MUCH WEIGHT BACK. I HAD PNEUMONIA AND 0 APPETITE WHICH IS NORMAL, BUT HONESTLY IF I AM THIN BUT HEALTHY WITH GOOD COLORING PLEASE JUST GET OFF OF ME ABOUT THIS. IT MAKES ME FEEL LIKE UTTER PILES OF DOG SHIT. I will exercise but I will do what I can, when I can and what I want to do. I eat and I honestly do not care if I am skinny now. If you care, but my doctor doesn't care as long as I am 120 (which I have been for 1mo), then maybe you need to ask yourself why it bothers you so much?
Here comes that moment when I made my own Mental Choice to accept and be and not hold myself to any standard... I made that choice in April.
Why did I decide to 1. not let my negative self talk affect me and 2. not let other people's criticism of how I look affect me... a comic. Yep another comic. I started to read the new Thor comics, where Jane (Thor's human ex) becomes Thor but also has Metastatic Breast Cancer. Here is a human, she is sick, but when she can she fights and is strong. This comic excerpt explains how I ACTUALLY HAVE BEEN LIVING SINCE 2010. And honest to god, it has helped me over come my shame for being skinny and my shame of being sick with CANCER and looking sick and ultimately that fear of never being a strong, indestructible fitness god (or whatever I thought I was). I have learned to accept that some days I need to rest, because my STRENGTH I am using all of that to take in treatment and stay alive. Some days I can be the MIGHTY old Caitlin who appears strong and is unstoppable and never needs rest. Of late, I have accepted that after that Craniotomy I have needed more days to recover and fight the Cancer within to stay alive, so I can have more days where I am Mighty Caitlin.
. 
So the reality is I am no superhero. I am not indestructible. I am not impervious to pain, sadness, set backs, or illnesses beyond my cancer. The reality is I am a strong person, but physically my strength is being used in other ways - to recover from this pneumonia, to fight this dumb cancer, and to accept that yoga & walking are perfectly OK forms of exercise on the days I feel capable of exercising.
The last 7 months have been tiring. A craniotomy 2x is no joke. Chemotherapy IV is no joke especially when you progressed through two different Chemotherapies in 7mo. Radiation 2x to my head was not easy. HONESTLY, most people still would not even think of gardening when recovering from pneumonia. BUT I did that because I wanted to. It tired me out. You know why??? Because I am sick. I have been sick since 2010, but it was easy to hide when my treatments were not needed to be dripped into me via a port or when I had hair and not a wig.
This is where I think my mind hurt me... I was in denial about how serious Stage 4 cancer can be. I see this in some newbies in my support group & honestly I hope they never wake up in an ICU accepting that they are sicker than they thought. I hope this blog helps all my Stage 4 sisters and even early stage sisters realize that we are sick. If we are sick, it is ok to rest, it is ok to have set backs, and it is ok to look sick.
Today's lesson is that I never accepted that I was sick and I think that was the problem. I held myself to be WONDER WOMAN. I felt if I could still do the normal, look normal, then I wasn't sick. This kept me hopeful, but in serious denial about how bad things could get for me. It did not hit me until Nov 14, 2016 waking up in NYC in an ICU that I WAS SICK WITH CANCER AND THIS WAS REAL AND SERIOUS. I can say I have lived with cancer since 2010, but the last 7mo I have finally been forced to accept, deal, and cope with what that really means.
In therapy I have learned that COPING means that:
1. Resting is not weakness.
2. Disability is not the end, but a beginning to find something new & something that makes me happy.
3. My hair is replaceable, my life is not.
4. I will never have to worry about dieting ever... I am embracing the thin.
5. Every day is a blessing and despite how bad a day could seem, there can be 1-2 good things in that bad day. I have to force myself to find this sometimes.
6. WE CANNOT PLAN BEYOND TODAY. Planning for tomorrow is never guaranteed.
7. We CAN plan for tomorrow to have something to look forward to, but also be willing to accept that cancer or illness may get in the way of those plans.
8. Start to place less value or mental concern on things like - money, what others think, and my internal desire to be the perfect cancer patient.
trust me these are all wavering lessons and I fall out of practicing them here & there. I am not perfect. No one but Wonder Woman can be her, but damn we can look to her as hope. I am a human and some days I am unstoppable and others I am just trying to get better and not let the cancer take over me.
Thursday, June 1, 2017
Pneumonia? Seriously, how I recovered from a beating from bad luck...
The past 10 days have been days of pretty crappy news, which has become harder and harder to swallow. Naturally I am a person who gives hope, has hope, and keeps looking for the answer. I actually had faith that Halaven was that answer. This chemo worked fast according to my lab work and I was holding onto the one rise in tumor markers to be a fluke. The biggest answer to the question if did Halaven stop working within a matter of two cycles....was the CT scan I had last Tuesday. So lets go over the crappy CT scan first.
This CT Scan did not show great news for my lungs. Halaven had failed me. It tricked me and pushed me down and honestly it was pretty hard to look at the bruises it left on my ego, grab my bag of hope, and just keep moving. There were spots in my pleura and lung region that have not grown in a year, but had doubled in size. New tiny nodes popped up around my lungs and chest wall. My liver showed shrinking in 1 spot and 2 stable spots. Bad news is my Peritoneum - the fatty lining in my abdomen, which is literally my stomachs "pleura," seems to still have cancer in it, which was on my CT scan in March 2017. Literally, I put this area of new disease in the "lets forget it because its scary and I do not want to think about it" part of my brain. I have 3 tumors in this fatty lining (how they are not growing out of me like heads in my stomach is beyond my understanding, because my stomach has 0 fat on the outside). The tumor that scares me the most is the one floating above my liver which is 6.7cm. I had cancer in this region in 2015, Lucitanib (trial drug) kept it stable and Xeloda blasted the crap away. The tumors in this region need to go as they run the risk of creating fluid in my abdomen, which can be pretty dangerous in the cancer world. I pray to my Higher Power and Angels and just ask for them to find something to kill these nasty tumors.
Good news from the scan??? Liver is stable. Bones have been stable 1 year. I hold onto hope that my brain continues to kill the annoying brain tumors with radiation and cannabis oils.
After 3 quick rounds of Halaven, where my hair has gotten patchy with a thin mullet (under my wig), my cancer has figured a way around Halaven pretty fast. I guess this Halaven did kill some things, but we aren't sure why the markers dropped and then rose. I think no one will ever have that answer, so we have to move on.
What is the next Step? The next step is Navelbine, another drip chemo used for breast cancer, lung cancer, and mesothelioma. My doctor feels that it would be a good match as it does a number on cancer in the lungs and my cancer also somehow has the mesothelin protein attached to in the pleura & we are assuming that the Peritoneum will also be targeted because it is known to also carry that protein. On to Navelbine! Plan is to do 2 weeks on, 1 off. Same cycle pattern, new drug.
My doctor and I also discussed two other chemotherapy options and also are resending my lung pleura out to foundation medicine and to the hospital for specific testing for Androgen Receptors, Keytruda, and something else that I clearly forgot. I will ask her next week. We also discussed some good trials for me that I have matched up with due to the genetic nature of my illness or my current treatment need. So according to Cornell, I have many options left. Catch for the trials is that my MRI in July needs to be stable or shrinking. I could go on and on as to why trials want a 4 week stable brain MRI, but its a rule to cover their own asses and also not put brain mets people at risk. Honestly I do not care, I would welcome a good Brain Scan again.
THAT IS EVERYTHING ON THE CANCER FRONT. NOW FOR MY FIRST FEVER SINCE 1998.
I think I can handle one beat down a week with medical issues without cracking slightly. Somehow I caught Pneumonia. I began having small dry coughs the Saturday after coming home from my vacation to Florida. The coughs got worse - I assumed the cancer was clogging my breathing passages, I was tired - I assumed I was lazy, and I was sore - I assumed it was from power yoga daily for the last month. I also discussed these symptoms with my doctor and she said it could be the lung met progression or my allergies, as I never have coughed from lung mets ever even when I lived with 1.5L of a pleural effusion at the base of my Left Lung for 2yrs.
So I got my first Navelbine on May 23 along with my monthly Xgeva. Side effects of both - FLU-LIKE SYMPTOMS. My gut somehow said that this so was not chemotherapy side-effects - 1. they hit me like a 18 wheeler on Wednesday when no matter what IV chemo I have gotten, my bad days are always TH and/or F. Wednesday I ran morning errands and barely pulled myself out of Whole Foods. I do believe I laid on the couch all day and was testing my temperature often, but my temperature would get to 99 then drop. I still was not convinced it was the chemotherapy, yet a part of me kept hoping it was the CHEMO-FLU.
Last Thursday (1 week ago), I woke up with a hacking cough with phlegm, felt warm, could barely get myself to the couch and had Kyle take the car to the train because for the second day in a row I had 0 energy or appetite. BOTH of these things were freaking me out. I cancelled a luncheon with my now ex-coworkers because I had no ride and I also was feeling pretty sick. I am blessed that my Step-Sister to be came and brought me lunch after her doctor and spent time with me. I felt super warm, so we started to test my temperature, which at 3pm rose to 102.4. Yes I had a fever. To make a long, boring story short, I ended up at the local ER and was diagnosed with Pneumonia.
I felt horrible. I was losing my usually perfect blood Oxygen by the hour, coughing, and I felt like a slug when I would walk anywhere... walking to the bathroom in the ER and in my hospital room was a task in itself & I did not want to eat anything. I never ended up at Cornell and was treated by the Oncologists at RMC I see 2x a year for medical Cannabis scripts and a physical. I was there from Thursday Night until Sunday Afternoon. I actually had great care at Riverview with the Oncologists, Infectious Disease Team and Nurses. I was discharged on 7 days of Levaquin.
Why did I not get transferred to Cornell, we asked, but its a long story because an On Call Fellow at Cornell did not want to do his job & neither did the ER doctor that evening. The discharge nurse and hospitalist doctor well they were pretty bad and did not write a great discharge plan, which ended up in the lap of my Oncology Team at Cornell. I asked for a damn Nebulizer, but the discharge nurse clearly does not like to do his job (yes that is you Gabriel at RMC) and said that he would take 20min to write the discharge plan for me. It is totally believable I interned at JSUMC and their paperwork if handwritten can be long. But the discharge plan was done half assed and could have been done by Trump (who has no medical training).
And the final medical news over the last two weeks is ....
1. I got Navelbine this week with Pneumonia. My APN and the covering doctor, Dr. Moore (adore her btw and she knows my local oncology team at RMC) chose to give me a 1/2 dose and I will get the other half dose next week. I did not want to leave without Chemo...I seriously believe my cancer went on the run when I had to take a 4 week break off of chemotherapy & went back on the same medications, which my body already figured out how to beat it down.
2. My blood Oxygen still was stinky on Tuesday (92 at rest, 84 after walking, BUT I can bring up my blood oxygen on my own, which is a sign of strong lungs), so my APN (thank god for her) ordered my Nebulizer for me & it will be here TOMORROW. My breathing is so much better now, but honestly my allergies suck in humidity and the Nebulizer will strengthen and open my lungs, which will be good for recovery from Pneumonia and Cancer in my lungs. Hopefully we can get my blood oxygen back to 98-100% like its always been despite cancer.
Me in the hospital on my Nebulizer! Of course there were many jokes following this video... gotta keep the humor alive people.
3. I am getting re-referred back to my Pulmonary Surgery Team to watch my lungs. My oncology team was quite shocked that they graduated me in March when my lungs were clear of all but 1 pleural tumor given my history of having primary lung/pleural mets at Stage 4 Diagnosis. I go back to the Pulmonary Surgeons next Wednesday who will keep a good eye on my little sacs of air.
4. Oddly enough we tested my tumor markers right after my first Navelbine drip. Both markers dropped close to 150-200 points. No one knows why...we cannot draw the conclusion if it was Navelbine or Halaven still working, but my scans look bad, so we can r/o Halaven as still working.
5. The big catch to all of this is that we have no clue when I got pneumonia. The assumption is on my flight back from Florida because I had symptoms the next day and did not end up spreading it to my friend and her entire family. BUT I was on Levaquin for 5 days for a UTI/Minor Kidney Infection in Early April & once I finished those antibiotics my tumor markers dropped. This goes to the next question and problem to be resolved. Now I wonder did I have walking pneumonia for a while and had no idea. We will never know, but I am being treated for it now.
6. Also we have no clue and neither do the radiologists if they were missing Pneumonia on my scans in March and May at Cornell, so my APN put an order in for them to review my CT from RMC and also re-review my scans for possible signs of pneumonia as some of the lymph nodes and nodules in my lungs could be cancer or pneumonia.
7. Dr. Moore also wanted me on Levaquin longer, so I am on it until next Tuesday night. RIGHT before I get the rest of my Navelbine. We also are not testing my tumor markers until the second round of Navelbine due to the risk of them being skewed from the lung inflammation caused by pneumonia.
and that is it... seriously... all I have been doing is sitting on my couch and walking little bits in my house because that is all I can handle. My appetite is slowly roaring back, fever has been gone, but the fatigue and night sweats are still a PIA. This will pass. I will get back to yoga. I will get outside soon to do my deck garden. I will have energy to paint our home soon. I will get to the beach and pool soon. This is just a crappy illness that I always said everyone got.
After the past 19yrs despite what illnesses were thrown at me - I have been forced to be bed bound due to a fever and due to a common illness. Yet Cancer has never kept me down too long. If that does not show you the type of person I am, then remember this I will keep kicking and screaming until my end of days & I hope everyone I know does too. I hope we find a way to reduce my cancer. I hope we find an immunotherapy or targeted drug that works long enough for me. I hope more money goes into research to keep me kicking and screaming and fighting until the day Cancer becomes a chronic disease and is no longer labeled as Terminal.
Monday, May 22, 2017
Where's Caitlin???
Ok I have pulled a serious "Where's Waldo" over here. I had a lot of information to blog about, but have been keeping myself so busy that I have not made anytime to update my blog. So lets rehash where I have been & what treatment has been like etc...
I SPENT THE LAST 2 MONTHS LIVING ...
I GOT MARRIED & I TRAVELED
1. The Wedding Happened
After having a Crainiotomy 6 months before our wedding, followed by radiation and chemotherapy, then a head wound infection with 6 weeks of IV antibiotics 3x/day & progression of disease which required a chemotherapy change... We got married. It was the best day of my life second to the day I met Kyle. I wanted to share some of the pictures we have from the wedding... we have 1,160 pictures...which I will be sharing online on Facebook shortly.
2. We went to MEXICO on our Honeymoon. We stayed at the Grand Velas resort, which was nothing but beautiful, relaxing, had amazing food & drink, services and accommodations for my dumb Gluten Allergy. Kyle and I had an amazing time... our pale skin turned a darker shade of Beige, but we enjoys 4 days pool and beach side and a couples massage. It was just what we needed after the 6 most stressful months of our lives. Here are some pictures of our amazing time and the view from the pool & room.
3. I went to Florida to visit one of my Breast Cancer Breasties who also has Metastatic Disease... I have known my friend for 7yrs, we were diagnosed the same year and our cancers both suck and have been quite troublesome this year for the first time ever. My friend had a rough March & April and she had moved to her parents in Florida...I found a super cheap ticket and then packed my bag to go visit her for 4 days. I went to chemotherapy with her, which was the first time I was the friend and not the patient at chemotherapy. We spent the rest of our time laying in her parents pool, going on walks ... which we got lost on the first time lol, meeting her amazing parents and aunt, eating food, and relaxing... and spending 4 days with a girlfriend laughing about things not related to cancer and also had emotional moments where we did talk cancer. She gives me so much hope and I love when she says "We are not going anywhere and we will see a cure." Her hope gives me hope and I hope mine gives her hope. She has a liver biopsy today so please keep her in your daily thoughts and prayers. I love her so much.
here is us enjoying life... getting tan, laughing and looking beautiful like always.
👻NOW FOR THE TREATMENT UPDATES 👻
1. After returning from Mexico, I started the SRS (radiation) treatments to the spots they found on my MRI in April. I had to go for four sessions. The first two were longer sessions as they got 2 spots on day one, 1 spot on day two and 1/3 of a lesion, and the last two sessions each covered 1/3 of a lesion. The 4th spot was split up due to a safety concern about the spot being near a previously radiated spot to avoid necrosis or bleeding to the dead tumor and also to avoid potentially radiating the CSF fluid output spot to avoid leakage of the CSF. I was upset about adding two more days, but honestly I am glad I do not have a bleeding or leaking brain. Radiation is done. I see my Neurosurgeon on July 3rd after my 8 week MRI. I am praying that radiation continues to remain affective on my brain tumors.
2. I am still on Halaven. I have finished 3 cycles of Halaven. My markers from Cycle 1 to Cycle 2 day 7 had dropped from the 800s to 200. We learned this when we were boarding our flight to Mexico. It was excellent news. The hair thinning, bone pain, joint pain, restless leg syndrome and crippling fatigue was well worth it if in 1.5 cycles the chemo was THAT effective.
BUT
my life is never that simple
3. We come back from Mexico and I start my 3rd cycle of Halaven and I am full of hope. How could I not be with those awesome labs, my clavicle nodes kept getting smaller according to my doctor, and I was done with brain radiation. They drew my tumor markers again that day to try to get me back onto getting my labs drawn on DAY 1 of every cycle.
I never look at my tumor markers in my patient portal. I used to, but it would turn me into a psycho mess and sometimes I could not speak to my doctor for hours or even a day if she wasn't in the state and at a research conference. In 2015, I decided to never read my tumor markers at home and I would wait until my next doctor's visit to discuss.
So on DAY 8 I asked about my tumor markers, I was told "they are confusing us now, so we are drawing them again today and sending you for a scan." My APN gave my mom the labs as we were getting my port accessed for blood draws before chemotherapy. My mom said "oh they are not that bad." I went and looked at them and the numbers my APN showed my mom were uhm BAD. My cea which dropped to 200 was 350 and my ca 15.3 which also was 200 was 900 something. I couldn't stand, I fell in the lab room and cried. My APN was gone, I haven't spoken to my doctor about this and I was surrounded by 2 chemotherapy nurses, the lab technician & my mother. I could not handle anymore bad news. My friend, whom I looked at as my cancer mother and she also attended treatment with me at Cornell, passed that morning. I did not want any bad news coming across my path as I was barely holding myself together after her death. I was already thinking "ALL MY FRIENDS ARE DYING AND WHEN AM I NEXT." I kept thinking of the amazing tumor marker drop and that radiation was all done to keep me from ruminating on that negative thought and to stay hopeful that this treatment was working.
My chemo nurse ran to get my doctor & the lab technician prayed over me and hugged me so tight...they truly care at my doctors office. My mom and I were brought back to meet with my doctor whom explained that the lab change also confused her and she is not sure what spiked it. She has been working with Halaven since it was in early trials and she reported that "it can do weird things to labs, so I am making sure we have you get a scan before I see you next to see what is going on inside as you are due for a scan anyways." She also did a physical exam and said the nodes keep shrinking and she said she doesn't want to assume or draw conclusions before my scan, but if the nodes are shrinking thats a good sign - "cancer shrinks and grows together, just some spots are larger than others or have more cancer cells inside."
I felt better after talking with her, but was still tearful and sad. I asked my APN to call me with my tumor markers and she agreed.
It has been 14days and I never got a phone call from anyone at my doctors office regarding my tumor markers. I was able to distract myself by staying busy, going to florida and doing yoga.
Today it has been hard not to think about it. I keep thinking of the CT Scan...the possibility that after 3 rounds of my 3rd cancer drug in a year, I will have progression again, and that I have never had a good CT scan in a long time that did not warrant bone radiation or a need for a pleurx catheter...Today I am working on barely any sleep. Halaven has given me Restless Leg Syndrome so I was up at least 4x at night due to RLS and hot flashes (which seriously went away after I stopped Xeloda).
Amongst this new cancer drama, I have been spending at least 1-2 days a week calling Horizon regarding surgeries, treatments and wig coverage issues. Horizon has actually been pretty easy to deal with, but it is still annoying because I have gotten no letters resolving the 3 grand port surgery that Horizon has refused to pay for twice, paying for my wig when my policy states 100% coverage yet they paid me 19% of my wig cost which was 8grand due to me needing a custom wig after the craniotomy as normal wigs cause my head to have pain and headaches from the elastic bands and the sizing does not fit my head well.
THE ICING ON THE CAKE is the Second Crainiotomy surgery where I was given two doctors - a plastic surgeon and a infectious disease doctor, who do not take my insurance. I had no choice and only the Infectious Disease doctor told my family that he was out of network. I was slammed with a 15,000 bill for my Plastic Surgeon's "closing of my wound." Horizon paid $2,500, so I gave Cornell that payment & explained that I did not know he was out of network or I would have possibly refused his services or asked for another doctor. Alas those were not the cards I was dealt and Cornell told me to not pay the rest of the bill as they will "speak with Dr. Spectre regarding my lack of employment and finances to pay the rest of the bill." I asked them to also call Horizon, but they paid what they felt an out of network doctor should be paid, yet they should have paid 80% of the cost and paid 17% of the bill. Now my plastic surgeon wants 6 grand out of my pocket. I had to agree to a monthly payment plan before they contact a collections company and also bar me from getting any treatment at Cornell. I cannot afford 6 extra grand for a surgery that my insurance should be paying. Now, I have to call Cornell to try and appeal the surgery to get more coverage. If they won't call then I will be appealing to Horizon myself, which in the past for me has never worked out so well unless the doctor also appealed with me & my plastic surgeon does not do claims or appeals for us...only the hospital billing. I am keeping my fingers crossed that the hospital billing department will work with me on the appeal despite me asking for a payment plan for the ridiculous charge my greedy plastic surgeon wants from a cancer patient.
SO YET AGAIN ANOTHER CANCER PATIENT WITH A CADILLAC INSURANCE PLAN IS GETTING SCREWED UP AND DOWN DO TO GREED AND DO TO INSURANCES NOW NOT WANTING TO BUDGE AND TAKE ADVANTAGE OF THE SICK WHO ACTUALLY USE THEIR PLANS
I am also going on Long Term Disability on June 1 and have left CPC for who knows how long... I guess my new job is going to be arguing with Cornell Billing and Horizon. I cannot afford a lawyer to do this for me nor am I paying this bill without trying to get someone AKA Horizon to pay it.
I also updated my GO FUND ME PAGE... which we are running out of funds after paying down past medical bills. NOW we have new ones... if you feel like it please share my blog or go fund me page, it would be very helpful to Kyle & Myself and our families.
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