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 :-)
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