Sunday, April 27, 2014
Insurance nightmares...
I found out Friday after I left chemo that insurance has DENIED my radio-embolization procedure. This week Dr. Friedman will be having a Peer-to-peer discussion with the MD at the insurance company to attempt to reverse the decision. (By the way, this happened before when I tried to get in-home physical therapy approved for Leo's cerebral palsy; they had some random MD of internal medicine making a judgement about something specific regarding cerebral palsy..how does that make sense?!?!) Dr. Friedman is also armed with information from the Siri-spheres company and Cedars Sinai. I will see if Philomena can put in a letter of support as well. I will also be calling the insurance company to find out WHY in all their wisdom (*cough, cough) they have decided to deny the procedure. Just how BAD do the liver tumors have to be in order for them to approve the procedure? What brilliant life saving method do they suggest I try instead of the latest cutting edge procedure that is minimally invasive? Surely it can't be a financial decision, right? I have to say that ever since Obamacare has been shoved into existence, and its been good on the one hand because people who are close to me are able to get (however I didn't say *afford) health insurance, the private insurance companies are giving previously insured, current policy holders a run for their money. Nothing is easy anymore. Nothing is approved anymore. Everything requires push-back, follow-up, extensive investigation, filing and re-filing, changing code numbers, etc. etc. A stressful paperwork fight is EXACTLY what people who are facing serious illnesses need, am I right? This next week will be an anxious one for me. I have a birthday on Thursday, perhaps I can pray that good news from the insurance company will be my present that day. Fingers and toes crossed.
Friday, April 25, 2014
The canvas
Sitting here at Tower getting my infusion…I had a scare today about an hour ago while getting the Abraxane that freaked me the f*ck out but more on that later… I opened up this blog and the editor told me that I had a post from last week that I never finished so I'll start with that first.
First of all, I want to give a special thank you and "shout out" to my beautiful friend Nandi. I haven't seen her in forever and out of the blue she asks me for my address….a few days later I got the special PEACE mug for my tea that I was so crazy about in Hawaii. I was so touched I started to cry. It was just so thoughtful and really made my day. I guess I'm not writing this blog for nothing! See, I get free gifts. Ca-ching!! Thank you Nandi.
So how are you? Everything good? Have you been watching Cosmos? Neil Degrasse Tyson is my hero. I love science. I forgot how much I love biology, physics, and chemistry; school was so much fun. So how am I? I am all over the place lately. Generally, I'm feeling run down. The fact that I fasted last week, got chemo, plus haven't been able to get back to a rigorous work out regimen don't help the overall picture. I need this ankle to heal so that I can get back to ballet and back to building muscle. I tried yoga last week the day AFTER I bumped up my melatonin to three tablets per night and it was a pointless session. I basically couldn't do much more than ujjayi breathing, stretching and lying down (emphasis on the lying down part). I was having terrible bone pain the past two weeks. I thought it was related to the ankle but since it was both legs it really couldn't have been. When I went for chemo last week my nurse practitioner Paige said is was related to the Abraxane. Apparently, bone pain can be a common side effect. This week, however, I am having less bone pain. I think the bone pain is related to the Xgeva shots. It's always very achy after I get that shot and then it dissipates over the month until I have to get another shot. I have been able to walk my neighborhood, starting out with shorter walks and building my way back up to the full distance with short stops along the way. Exercise is supposed to help the joint and bone aches so I'm trying to keep it up. I'm also trying to build up my stamina and endurance because I've signed up for the LOVE foundation annual walk!
Walk with Love 2014 for a Future Without Breast Cancer. May 18th at 10AM, right in my very own neighborhood in the Pacific Palisades. I hope we walk by my house. I did this walk two years ago and remember walking by our future house and admiring it. How fun it will be to walk by it now!!
I was trying to explain to someone the other day what being a cancer patient was like. Basically you just do what you have to do. I don't like it but I still do it because let's be frank - there isn't another option. Just like you feel when you know you're going to get a shot or the doctor is going to prod at an injury to check for sprains or breaks - you flinch, you feel dread, your fight or flight response kicks in and you hope there is some way to get out of it or away from the pain. When you realize you can't you just take a deep breath, suck it up and get it over with. That's how this feels. I still feel the way you would and do at the doctor's office. I still feel that absolute dread when I see the Chemo nurses taking out their packets with the huber needles, sterilization materials, dressings etc. I constantly take deep breaths, look away, try to trick my mind that the pain will be over soon. That soon I'll be back home and away from this place.
Fasting has become harder for me. This last one was really difficult. I think it was most difficult because it was emotionally hard. I kind of could care less about the food plus I was pretty nauseous last week too. I was losing faith that the fasting was having an impact. Looking at my blood work though it appears to be working. My blood work has remained stable despite how terrible I may feel at times. When I really think about what was bothering me the most, it is the balance of doing everything I can when I don't really know what is working. I'm trying so hard to be perfect all the time with supplements, fasting, exercise, diet, doctor appointments and follow ups. It's exhausting. Good thing I can remember that I am human. That I am NOT perfect. I am attempting to shift my type A personality. I know that I can take a beat. That I can slip up. Have an off day. Forget pills. Skip a work out. Miss an appointment. Take a nap instead. And feel OK about it. This is what I have been focusing on. Doing less. Doing only the things I feel I really want to or can do.
I had my Y-90 radio-embolization consultation for Dr. Marc Friedman at Cedars. He is very impressive and certainly put me at ease about this process. It will be a series of three procedures once they get done fighting it out with the insurance company for approval. They started two weeks ago with the authorization process. Once we get the go ahead I will have an angiogram to map out the path through my femoral artery to the hepatic artery where they will release the radiation to zap out of the liver tumors. They will start with the left side. Then they will take a four week break before they check out my blood counts, etc. etc. and then do the right side (which I'm curious about since the Abraxane is shrinking them)…
Today during my infusion I started feeling super cold on my right side and was having difficulty breathing. All of a sudden I felt super nauseous, couldn't take a deep breath and started having a panic attack. My nurse had to stop the Abraxane and take a break. 20 minutes later she started again with a slower rate and had to give me the steroids. Apparently, sudden on-set chest pain and issues are par for the course with Abraxane. It is likely that I will need the steroids again next week (which will be the last infusion for this cycle, yay). It felt like someone was sitting on my chest, while sucking in liquid oxygen at a high altitude. I was very scared. I did not feel well and I did NOT like it. I'm going to get a chest x-ray next week. I want to make sure it was just the infusion and not an issue with my lungs.
Can I say it…FUCK cancer. OK, there I said it.
I saw my therapist Pam recently and communicated my emotional roller coaster and how very afraid I am of continuing treatment, how it has been increasingly difficult to recover after each infusion, and how the upcoming procedure scares me. I do my best to not let the feelings over take me but I still have to acknowledge that they are there and that they are very real. She explained that those dark feelings and emotions can be there and that they are a small part on a larger emotional canvas.
Our emotional canvas is a detailed and changing painting. There will be some dark spots but we can't let it over take the whole canvas. Recognize it is there and that it can grow and diminish depending on the day. Stay in the present moment. Like that lame movie I forced myself to finish watching with Will Smith and his kid, After Earth. The best part of that movie was the message that there is no fear in the very present moment. Fear is in the future or of not letting go of the past.
My fascination with death is becoming less of one with fear and one of acceptance. Yes, I know we are all going to die, blah blah blah. (I'm a little tired of hearing that from people who aren't dealing with a serious illness). And no I'm not saying I am anywhere near that point. I have faith that things are going to turn around for me. I'm saying that understanding and accepting death is a process. A true process that has to happen to achieve peace before you go. You start to see that when people who are close to you die, who may or may not be in similar circumstance to you. Were they ready? Were they scared? Were they in pain and ready to be free? This is a dark spot on my emotional canvas at the moment that I am working through. But I have 100 times more bright spots on my canvas to think about…
I took the kids to Disneyland on Wednesday kind of spur of the moment. Abby had a random day off and Leo is still on his spring break (their spring breaks don't overlap). It was a really fabulous day. Very exhausting but totally worth it. There was this one point after the dumbo ride and hat shopping at the Mad Hatter that Abby turned around in the busy plaza and took Leo's hand to walk with him over to the restaurant for lunch. I whipped out my phone and started snapping away because it was one of those moments that makes your heart swoon and fill with pride. I love them so much!!!
It's time for my last cold cap of the day for this infusion so I'm going to wrap it up. Fingers crossed that I hear from Dr. Freidman's office and can get started this week or next for the radio-embolization!!
Thank you for listening.
Love,
Jess
First of all, I want to give a special thank you and "shout out" to my beautiful friend Nandi. I haven't seen her in forever and out of the blue she asks me for my address….a few days later I got the special PEACE mug for my tea that I was so crazy about in Hawaii. I was so touched I started to cry. It was just so thoughtful and really made my day. I guess I'm not writing this blog for nothing! See, I get free gifts. Ca-ching!! Thank you Nandi.
So how are you? Everything good? Have you been watching Cosmos? Neil Degrasse Tyson is my hero. I love science. I forgot how much I love biology, physics, and chemistry; school was so much fun. So how am I? I am all over the place lately. Generally, I'm feeling run down. The fact that I fasted last week, got chemo, plus haven't been able to get back to a rigorous work out regimen don't help the overall picture. I need this ankle to heal so that I can get back to ballet and back to building muscle. I tried yoga last week the day AFTER I bumped up my melatonin to three tablets per night and it was a pointless session. I basically couldn't do much more than ujjayi breathing, stretching and lying down (emphasis on the lying down part). I was having terrible bone pain the past two weeks. I thought it was related to the ankle but since it was both legs it really couldn't have been. When I went for chemo last week my nurse practitioner Paige said is was related to the Abraxane. Apparently, bone pain can be a common side effect. This week, however, I am having less bone pain. I think the bone pain is related to the Xgeva shots. It's always very achy after I get that shot and then it dissipates over the month until I have to get another shot. I have been able to walk my neighborhood, starting out with shorter walks and building my way back up to the full distance with short stops along the way. Exercise is supposed to help the joint and bone aches so I'm trying to keep it up. I'm also trying to build up my stamina and endurance because I've signed up for the LOVE foundation annual walk!
Walk with Love 2014 for a Future Without Breast Cancer. May 18th at 10AM, right in my very own neighborhood in the Pacific Palisades. I hope we walk by my house. I did this walk two years ago and remember walking by our future house and admiring it. How fun it will be to walk by it now!!
I was trying to explain to someone the other day what being a cancer patient was like. Basically you just do what you have to do. I don't like it but I still do it because let's be frank - there isn't another option. Just like you feel when you know you're going to get a shot or the doctor is going to prod at an injury to check for sprains or breaks - you flinch, you feel dread, your fight or flight response kicks in and you hope there is some way to get out of it or away from the pain. When you realize you can't you just take a deep breath, suck it up and get it over with. That's how this feels. I still feel the way you would and do at the doctor's office. I still feel that absolute dread when I see the Chemo nurses taking out their packets with the huber needles, sterilization materials, dressings etc. I constantly take deep breaths, look away, try to trick my mind that the pain will be over soon. That soon I'll be back home and away from this place.
Fasting has become harder for me. This last one was really difficult. I think it was most difficult because it was emotionally hard. I kind of could care less about the food plus I was pretty nauseous last week too. I was losing faith that the fasting was having an impact. Looking at my blood work though it appears to be working. My blood work has remained stable despite how terrible I may feel at times. When I really think about what was bothering me the most, it is the balance of doing everything I can when I don't really know what is working. I'm trying so hard to be perfect all the time with supplements, fasting, exercise, diet, doctor appointments and follow ups. It's exhausting. Good thing I can remember that I am human. That I am NOT perfect. I am attempting to shift my type A personality. I know that I can take a beat. That I can slip up. Have an off day. Forget pills. Skip a work out. Miss an appointment. Take a nap instead. And feel OK about it. This is what I have been focusing on. Doing less. Doing only the things I feel I really want to or can do.
I had my Y-90 radio-embolization consultation for Dr. Marc Friedman at Cedars. He is very impressive and certainly put me at ease about this process. It will be a series of three procedures once they get done fighting it out with the insurance company for approval. They started two weeks ago with the authorization process. Once we get the go ahead I will have an angiogram to map out the path through my femoral artery to the hepatic artery where they will release the radiation to zap out of the liver tumors. They will start with the left side. Then they will take a four week break before they check out my blood counts, etc. etc. and then do the right side (which I'm curious about since the Abraxane is shrinking them)…
Today during my infusion I started feeling super cold on my right side and was having difficulty breathing. All of a sudden I felt super nauseous, couldn't take a deep breath and started having a panic attack. My nurse had to stop the Abraxane and take a break. 20 minutes later she started again with a slower rate and had to give me the steroids. Apparently, sudden on-set chest pain and issues are par for the course with Abraxane. It is likely that I will need the steroids again next week (which will be the last infusion for this cycle, yay). It felt like someone was sitting on my chest, while sucking in liquid oxygen at a high altitude. I was very scared. I did not feel well and I did NOT like it. I'm going to get a chest x-ray next week. I want to make sure it was just the infusion and not an issue with my lungs.
Can I say it…FUCK cancer. OK, there I said it.
I saw my therapist Pam recently and communicated my emotional roller coaster and how very afraid I am of continuing treatment, how it has been increasingly difficult to recover after each infusion, and how the upcoming procedure scares me. I do my best to not let the feelings over take me but I still have to acknowledge that they are there and that they are very real. She explained that those dark feelings and emotions can be there and that they are a small part on a larger emotional canvas.
Our emotional canvas is a detailed and changing painting. There will be some dark spots but we can't let it over take the whole canvas. Recognize it is there and that it can grow and diminish depending on the day. Stay in the present moment. Like that lame movie I forced myself to finish watching with Will Smith and his kid, After Earth. The best part of that movie was the message that there is no fear in the very present moment. Fear is in the future or of not letting go of the past.
My fascination with death is becoming less of one with fear and one of acceptance. Yes, I know we are all going to die, blah blah blah. (I'm a little tired of hearing that from people who aren't dealing with a serious illness). And no I'm not saying I am anywhere near that point. I have faith that things are going to turn around for me. I'm saying that understanding and accepting death is a process. A true process that has to happen to achieve peace before you go. You start to see that when people who are close to you die, who may or may not be in similar circumstance to you. Were they ready? Were they scared? Were they in pain and ready to be free? This is a dark spot on my emotional canvas at the moment that I am working through. But I have 100 times more bright spots on my canvas to think about…
I took the kids to Disneyland on Wednesday kind of spur of the moment. Abby had a random day off and Leo is still on his spring break (their spring breaks don't overlap). It was a really fabulous day. Very exhausting but totally worth it. There was this one point after the dumbo ride and hat shopping at the Mad Hatter that Abby turned around in the busy plaza and took Leo's hand to walk with him over to the restaurant for lunch. I whipped out my phone and started snapping away because it was one of those moments that makes your heart swoon and fill with pride. I love them so much!!!
It's time for my last cold cap of the day for this infusion so I'm going to wrap it up. Fingers crossed that I hear from Dr. Freidman's office and can get started this week or next for the radio-embolization!!
Thank you for listening.
Love,
Jess
Tuesday, April 8, 2014
Doing fine
I've been too busy (in a good way) to post and that is a good thing. It's spring break!! I'm a girl gone wild!! Woo hoo...
I just returned from an amazing 10 day trip to Hawaii for Spring Break, and I swam, ran, yoga'd, played with the kids every day. Unfortunately on the evening of the second to last day I went for a run (hard core by my standards and was running full force like some kind of athlete, I may have been influenced by the lava man triathlon the previous day but I digress) and fell, twisting and spraining my ankle and getting some nasty cuts in the process. I was running on a back street of the hotel property and just lost my footing, I think on some finely ground lava rocks. The next day was David's birthday celebration and I wanted to do all kinds of things for that but there went those plans, along with plans to swim in the ocean one or two more times before we left. Bummer, dude.
After I woke up from a nap on the fourth day or our trip I checked my phone and saw a flurry of activity in a message board I was tagged in. My friend and fellow Stage IV cancer warrior Martha Mata died. She had an exploratory surgery for a biopsy that Friday but I had heard she got through it. I was shocked and rattled to hear such bad news. I wanted (and selfishly needed) for her to be okay and get through her treatments. I know how hard she yearned for things to be back to normal for her. She was a year younger than me in school but we really knew each other through our conversations as adults and as cancer survivors. Her death is so tragic. It really struck me hard. I know how much she enjoyed First Descents and going on adventures. For those of you who don't know, I am pretty petrified of the ocean. It feels like a monstrous beast that you don't mess with. I made sure to do things that she liked to do. I stand up paddle boarded, dove into the ocean, body surfed waves (one of which Abby saw me get go under and she flipped out but I came right back up with a thumbs up), ran, walked, enjoyed the sunsets, the wind, the water, the air and all because she no longer can. I tried talking to her while I did these things. I asked her when I was floating on the ocean if it was easier for her now. My heart told me that she was at peace. I decided to take my anger and grief and fuel it into an appreciation for my own life and my own fight. To keep fighting in her name. Fuck you cancer. Fuck you for robbing Martha of life during her prime years. She fought you bravely with her whole heart. You are a conniving, ugly, manipulative, horrible, and heartless disease. We are going to figure out how to beat you.
Have you read this? Anti-CD47 cancer therapy clinical trials
I started fasting the last day, our travel day which made it easier since there isn't anything remotely healthy to eat at airports or on the airplane so I had nuts, tea and water all day. It sure was hard to wake up with the time change, losing three hours of sleep, but woke up and drove myself to chemo. Back to reality. Everything was fine. I was very worried my counts would be down since I exercised like a mad person and did have two nights of wine drinking and dessert eating. I indulged, it's vacation! The rest of the time was fish, salads, fruits, rice, no gluten, etc. OKAY?! (I'm really telling myself that). My blood counts were good. Up from two weeks ago. They took tumor markers again but at this point I am just not that interested. They go up and they go down. I'm focusing on what the scans say. I did the cold caps, drank tea, water and some soup. Biggest let down was that I was due for my two injections. Big f'ing bummer, dude. They really knock me out. Lupron and Xgeva. I save them for the end when I'm not hooked up or freezing my scalp to get the two gnarly pricks. Then I drove home to the kiddos! The following days over the weekend I spent recovering from the ankle issue, chemo issue, and injections.
My good friend Daniel forwarded some very relevant articles to me over the break. This was one of the trials I was looking to get into BUT I'm not actually post-menopausal so I didn't qualify. Forced chemical menopause is not the same.... These new trials are being managed by Dr. Dennis Slamon at UCLA (among others) who I had talked to at my initial diagnosis. He and his team are the researchers who developed Herceptin for Her2 positive types of tumors...nonetheless these new trials are important and interesting to me because they target estrogen receptor positive, her2 negative types of tumors.
Pfizer breast cancer drug results impressive
Breast Cancer drug shows groundbreaking results
Pfizer drug double time to breast cancer tumor growth in trial
Oh yeah, coming up on Thursday I have my consultation with Dr. Mark Friedman regarding the Radioembolization. I haven't started researching this yet. Not sure I should. He plans to walk me through the outpatient procedures (with an S) at the first appointment. Here is one interesting article about the procedure, if it in fact is one in the same: Y-90 Radioembalization
Enough cancer talk. I loved this mug I used while in Hawaii. It took everything within me not to pack it into my suitcase. I need to remember this on a daily basis. No matter what life throws your way, you can take some deep breaths and work to find peace in your heart and mind. I am thankful to my husband and family for being able to take such an amazing vacation. To have time away from reality. To have time to heal and relax and recenter.
Lately I've been listening to audible books for my book clubs, the first was The Flamethrowers by Rachel Kushner (good but not my favorite), next was We Are All Completely Beside Ourselves by Karen Fowler (very well done) and my favorite was A Tale for the Time Being by Ruth Ozeki. I loved this book. It had me laughing, crying and engrossed until the end. I am loving all these books because they let me escape to different lives, periods, and places. Books are the most wonderful form of distraction. I am especially becoming addicted to the audio books. And anything else portable which leads me to my next point....
I am really loving (and yes, laugh if you will since I am very behind the times of all you techno-savvy peeps) are the TED talks. There's an iphone and ipad app and you can watch or listen (depending on how much memory you want to use) to the talks while on the go. There are two that my therapist recommended I watch, both by Dr. Brene Brown. Please look them up - the first is on VULNERABILITY and the second is on SHAME. They are only about 20 minutes or less each and they are pretty powerful. Another one I enjoyed was by a comedian with cerebral palsy. We all have our own struggles and paths, it's all about the journey, right?
I am worthy of LOVE and BELONGING.
I have the courage to be IMPERFECT.
I have the COMPASSION to be kind to myself first and then to others.
I fully embrace VULNERABILITY.
I let myself be SEEN and be HEARD.
I LOVE with my whole heart.
I STRUGGLE.
I am UNCERTAIN.
I practice GRATITUDE and lean into JOY.
I AM ENOUGH.
I AM ENOUGH.
I AM ENOUGH.
I AM ENOUGH.
I AM ENOUGH.
Why does typing that last sentence make me cry and shrink down? Three little words that are so powerful. Each day I am learning to embrace that concept. I am enough. I am strong. I am healthy. I am happy. I am at ease. I am peace.
May you be well.
XOXO
I just returned from an amazing 10 day trip to Hawaii for Spring Break, and I swam, ran, yoga'd, played with the kids every day. Unfortunately on the evening of the second to last day I went for a run (hard core by my standards and was running full force like some kind of athlete, I may have been influenced by the lava man triathlon the previous day but I digress) and fell, twisting and spraining my ankle and getting some nasty cuts in the process. I was running on a back street of the hotel property and just lost my footing, I think on some finely ground lava rocks. The next day was David's birthday celebration and I wanted to do all kinds of things for that but there went those plans, along with plans to swim in the ocean one or two more times before we left. Bummer, dude.
After I woke up from a nap on the fourth day or our trip I checked my phone and saw a flurry of activity in a message board I was tagged in. My friend and fellow Stage IV cancer warrior Martha Mata died. She had an exploratory surgery for a biopsy that Friday but I had heard she got through it. I was shocked and rattled to hear such bad news. I wanted (and selfishly needed) for her to be okay and get through her treatments. I know how hard she yearned for things to be back to normal for her. She was a year younger than me in school but we really knew each other through our conversations as adults and as cancer survivors. Her death is so tragic. It really struck me hard. I know how much she enjoyed First Descents and going on adventures. For those of you who don't know, I am pretty petrified of the ocean. It feels like a monstrous beast that you don't mess with. I made sure to do things that she liked to do. I stand up paddle boarded, dove into the ocean, body surfed waves (one of which Abby saw me get go under and she flipped out but I came right back up with a thumbs up), ran, walked, enjoyed the sunsets, the wind, the water, the air and all because she no longer can. I tried talking to her while I did these things. I asked her when I was floating on the ocean if it was easier for her now. My heart told me that she was at peace. I decided to take my anger and grief and fuel it into an appreciation for my own life and my own fight. To keep fighting in her name. Fuck you cancer. Fuck you for robbing Martha of life during her prime years. She fought you bravely with her whole heart. You are a conniving, ugly, manipulative, horrible, and heartless disease. We are going to figure out how to beat you.
Have you read this? Anti-CD47 cancer therapy clinical trials
I started fasting the last day, our travel day which made it easier since there isn't anything remotely healthy to eat at airports or on the airplane so I had nuts, tea and water all day. It sure was hard to wake up with the time change, losing three hours of sleep, but woke up and drove myself to chemo. Back to reality. Everything was fine. I was very worried my counts would be down since I exercised like a mad person and did have two nights of wine drinking and dessert eating. I indulged, it's vacation! The rest of the time was fish, salads, fruits, rice, no gluten, etc. OKAY?! (I'm really telling myself that). My blood counts were good. Up from two weeks ago. They took tumor markers again but at this point I am just not that interested. They go up and they go down. I'm focusing on what the scans say. I did the cold caps, drank tea, water and some soup. Biggest let down was that I was due for my two injections. Big f'ing bummer, dude. They really knock me out. Lupron and Xgeva. I save them for the end when I'm not hooked up or freezing my scalp to get the two gnarly pricks. Then I drove home to the kiddos! The following days over the weekend I spent recovering from the ankle issue, chemo issue, and injections.
My good friend Daniel forwarded some very relevant articles to me over the break. This was one of the trials I was looking to get into BUT I'm not actually post-menopausal so I didn't qualify. Forced chemical menopause is not the same.... These new trials are being managed by Dr. Dennis Slamon at UCLA (among others) who I had talked to at my initial diagnosis. He and his team are the researchers who developed Herceptin for Her2 positive types of tumors...nonetheless these new trials are important and interesting to me because they target estrogen receptor positive, her2 negative types of tumors.
Pfizer breast cancer drug results impressive
Breast Cancer drug shows groundbreaking results
Pfizer drug double time to breast cancer tumor growth in trial
Oh yeah, coming up on Thursday I have my consultation with Dr. Mark Friedman regarding the Radioembolization. I haven't started researching this yet. Not sure I should. He plans to walk me through the outpatient procedures (with an S) at the first appointment. Here is one interesting article about the procedure, if it in fact is one in the same: Y-90 Radioembalization
Enough cancer talk. I loved this mug I used while in Hawaii. It took everything within me not to pack it into my suitcase. I need to remember this on a daily basis. No matter what life throws your way, you can take some deep breaths and work to find peace in your heart and mind. I am thankful to my husband and family for being able to take such an amazing vacation. To have time away from reality. To have time to heal and relax and recenter.
Lately I've been listening to audible books for my book clubs, the first was The Flamethrowers by Rachel Kushner (good but not my favorite), next was We Are All Completely Beside Ourselves by Karen Fowler (very well done) and my favorite was A Tale for the Time Being by Ruth Ozeki. I loved this book. It had me laughing, crying and engrossed until the end. I am loving all these books because they let me escape to different lives, periods, and places. Books are the most wonderful form of distraction. I am especially becoming addicted to the audio books. And anything else portable which leads me to my next point....
I am really loving (and yes, laugh if you will since I am very behind the times of all you techno-savvy peeps) are the TED talks. There's an iphone and ipad app and you can watch or listen (depending on how much memory you want to use) to the talks while on the go. There are two that my therapist recommended I watch, both by Dr. Brene Brown. Please look them up - the first is on VULNERABILITY and the second is on SHAME. They are only about 20 minutes or less each and they are pretty powerful. Another one I enjoyed was by a comedian with cerebral palsy. We all have our own struggles and paths, it's all about the journey, right?
I am worthy of LOVE and BELONGING.
I have the courage to be IMPERFECT.
I have the COMPASSION to be kind to myself first and then to others.
I fully embrace VULNERABILITY.
I let myself be SEEN and be HEARD.
I LOVE with my whole heart.
I STRUGGLE.
I am UNCERTAIN.
I practice GRATITUDE and lean into JOY.
I AM ENOUGH.
I AM ENOUGH.
I AM ENOUGH.
I AM ENOUGH.
I AM ENOUGH.
Why does typing that last sentence make me cry and shrink down? Three little words that are so powerful. Each day I am learning to embrace that concept. I am enough. I am strong. I am healthy. I am happy. I am at ease. I am peace.
May you be well.
XOXO
Monday, March 17, 2014
Forging ahead
Brain MRI was normal I found out on Wednesday. I started my fast Tuesday morning and it was fine. Hunger was my constant companion all week and it was a little daily reminder that I am doing all that I can to beat this disease. I found a way to incorporate Dr. Conklin's many, many supplements. I replaced half of the L-nutra energy bar with his Klean Athlete protein powder in the mornings. I even added in a kombucha drink (in addition to my normal probiotics) that had lemon and cayenne to help with cleansing my organs during the fast. Had another infusion on Friday. Counts were borderline but I'm pushing through. Will check in again on Wednesday to see how my counts are because I may need a neupogen or neulasta shot to boost my counts to continue treatment on Friday. The cold is lingering. It's mostly just a mild cough here and there. Who knows what is going on with the salmonella thing. I don't have any feedback from the most recent samples. I should know next week. I need to keep pushing through so I can take a spring break vacation and continue with the last session of the third cycle the Friday I return April 4th. I need to be resting more but I haven't found it in me. I just find myself wanting to live life to the fullest instead of slowing down. I know this is a fine line to walk. I promise I will rest in a little bit. As soon as I am back from a little adult trip with the husband.
XOXO
XOXO
Monday, March 10, 2014
A box of biscuits, a box of mixed biscuits and a biscuit mixer!
It's been a whirlwind few weeks. I've been too preoccupied with daily life to sit down for an update. I guess that's a good thing. Things are plugging along...
I was scheduled for chemo on Friday and then scans the following week of the 10th. Philomena moved up my scans to the past week, on Wednesday, because she doesn't like that the tumor markers keep rising (and neither do I)...
I was scheduled for chemo on Friday and then scans the following week of the 10th. Philomena moved up my scans to the past week, on Wednesday, because she doesn't like that the tumor markers keep rising (and neither do I)...
There were some issues getting an accurate chronological picture since I had a full PET/CT in September but a CAT scan in January (because insurance won't cover a full PET/CT each time), and just now on March 5th a full PET/CT. Philomena was confused by the reports because they couldn't show an adequate depiction of what was going on. They had to compare the September PET to the March PET but that painted a dramatically different picture that wasn't great. When David and I first got in the room with her on Thursday afternoon, she didn't seem too pleased or sure of the results. During my visit with her, however, she got the nuclear radiologist on the phone to get a more accurate interpretation of the results. After her conversation with the radiologist Philomena's whole demeanor changed and she became very matter of fact and direct about what our plan was going forward.
The scans showed mostly good results, bone lesions have dramatically improved (words from the radiologist), the right lobe of the liver has improved but there is progression on the left lobe of liver. That could explain the tumor markers. However, you know how she is, I'm getting a brain MRI since I haven't had one since December 2012. She's wondering if there's a little spot or something on my brain (!?!?!?) that the PET/CT doesn't cover that could explain the tumor markers rising. I'm not having any symptoms so she just wants to cover all the bases. I don't like waiting around for these kind of tests so I scheduled that ASAP...
Good news is that I can continue on this treatment. She actually told the radiologist "I am trying to see if there has been enough improvement since the last scan so I don't have to throw out this treatment plan"... The consensus was that things were looking better. To be fair, I did have that whole hiccup with the salmonella so that threw things off and I didn't have two straight cycles before the scans so she says overall it's a very favorable result. I have never been more excited to do chemo than I was this past Friday. First it was off then it was back on with a fury. Thankfully whomever does the caps didn't get the memo that it was cancelled so they were already in the freezer waiting to go...that's one mistake I can live with and appreciate. It was meant to be!
Her thoughts are to continue on the Abraxane. Most people don't get their scans until after three or four cycles. Philomena is being very cautious. I think because things went a little nuts on the Afinitor/Aromasin combo. I hate those fucking drugs. They are the devil and I felt like they were fertilizer to the cancer. I'm hoping that getting more of these treatments under my belt will start to knock the rest of the lesions out of the park. Philomena is also going to talk to Mark Freedman, the liver MD over at Cedars to see if the left lobe liver lesions (say that five times, real fast) are candidates for radio-frequency ablation. She says this often happens where most of the tumors will be responding except for one area and those she tries to remedy through radiation or another method if possible. Stay tuned.
I will start fasting again tomorrow for my infusion this Friday. I'm doing another weird schedule again so that I can go away with the family for spring break. It means that once again I will do two weeks of the third cycle, a week off, then come back to complete the last week. This, of course, only works if my blood counts cooperate with my plans. I do feel that the fasting is helping. I know for sure it is helping with the side effects, I feel less tingling, less nausea, and have more energy after chemo when coming off the fast. I am also secretly hoping that it will help with the efficacy of the chemo overall. I feel like I am in a race against time trying to zap these tumors before they outsmart the treatment and start to develop immunity. This is what happens at Stage IV - you work by trial and error to find a treatment that will work and then stay on it as long as the tumors keep responding, either by shrinking or remaining stable, before the cancer "gets smart" and you have to switch to another. The difficult part about switching to another is that you only have so many "tools" in your tool belt and as you use up one you have to retire it, thus limiting your choices in the future (although not always).
I will start fasting again tomorrow for my infusion this Friday. I'm doing another weird schedule again so that I can go away with the family for spring break. It means that once again I will do two weeks of the third cycle, a week off, then come back to complete the last week. This, of course, only works if my blood counts cooperate with my plans. I do feel that the fasting is helping. I know for sure it is helping with the side effects, I feel less tingling, less nausea, and have more energy after chemo when coming off the fast. I am also secretly hoping that it will help with the efficacy of the chemo overall. I feel like I am in a race against time trying to zap these tumors before they outsmart the treatment and start to develop immunity. This is what happens at Stage IV - you work by trial and error to find a treatment that will work and then stay on it as long as the tumors keep responding, either by shrinking or remaining stable, before the cancer "gets smart" and you have to switch to another. The difficult part about switching to another is that you only have so many "tools" in your tool belt and as you use up one you have to retire it, thus limiting your choices in the future (although not always).
I am continuing with the penguin cold cap therapy for the hair. It has been working. I have one larger spot near my ear that is bald and shedding more than normal hair loss but overall I have hair. At first I started doing this so that things would look normal for the kids. I now realize that I am also doing it for me. When you shave your head and/or lose your hair and look in the mirror, you see a different reality that what you are use to. It makes me feel more sick. If I look the same, if I stare in the mirror at the normal me I usually see then everything kind of feels the same. No wigs, no fuss, no hats. It does take more time, make you numb and cost more money, those are the drawbacks. Most people I have talked to that have done it would do it all over again though.
I had the brain MRI this afternoon (Monday) and the process went fine. The unfortunate part was that they couldn't use my power port and used my left arm (which is the no poke zone but since I've used it in the past with success I kept my mouth shut). I asked to see my images and I'm no radiologist of course but I didn't see any spots that stuck out, white or black with or without contrast. We'll see if they come back with something different in two to three days. I'm not going to think about it until I have to.
Insurance is a nightmare...ever since the new Obama Care changes I have had more and more things not be approved on the SAME insurance we had last year. I had the scans on Wednesday. Empire Blue Cross/Blue Shield called to tell me TODAY on Monday that the scan was denied. OH, really?! WTF.
Insurance is a nightmare...ever since the new Obama Care changes I have had more and more things not be approved on the SAME insurance we had last year. I had the scans on Wednesday. Empire Blue Cross/Blue Shield called to tell me TODAY on Monday that the scan was denied. OH, really?! WTF.
In other fun and interesting news, I have been reported by Cedars-Sinai because of the salmonella (did I write this already?) and have to produce samples until I clear it out of my system. The samples from two weekends ago (right after I finished the antibiotics) were mixed. The first sample was negative and the second sample was positive. That means I have to keep giving weekly samples until I report two consecutive weeks of negative results. The Public Healthy nurse told me it could be a few months before it effective leaves my body because it "likes to hide in the gall bladder". UGH. Picture that. Peek-a-boo, I'm salmonella. Want to play? As if I don't have enough going on!! But they don't want to endanger the health of the public. I'm a danger to the general public. OMG. And I got Leo's cold. I severely dislike being immune-compromised. Let's get this health back in check ASAP.
To my other moms and dads out there, you'll appreciate that I no longer have the ear worm of "Let It Go" stuck in my head at all hours of the day and night. Ever since we watched the Lego Movie it's all about "Everything is Awesome"...everything is cool when you're part of a team...everything is awesome...when we're living our dream. Yeah, everything is awesome. I'm drinking the kool-aid.
To my other moms and dads out there, you'll appreciate that I no longer have the ear worm of "Let It Go" stuck in my head at all hours of the day and night. Ever since we watched the Lego Movie it's all about "Everything is Awesome"...everything is cool when you're part of a team...everything is awesome...when we're living our dream. Yeah, everything is awesome. I'm drinking the kool-aid.
Keep on fighting!!
Friday, February 21, 2014
Well then!
I was so good. I finished my fast. I got my infusion on Friday. I looked forward to breaking my fast on Saturday night with friends at a dinner party we were invited to. I went to lunch that Saturday with David and had two bowls of miso soup (no tofu) and some hot herbal tea. We went to our dinner party and I took it slow...grapes, olives, hummus with gluten free crackers. Then for dinner, I brought my own vegan black bean soup with avocado that Chef Ally had made for me. The host prepared butter lettuce salad with sliced almonds and gorgonzola cheese. I decided to have the salad since I knew I wouldn't be eating much. I also decided to have very tiny sips of wine to taste. The salad, without eating the cheese was good so when David didn't touch his (because he doesn't like dressing) we switched plates and I ate his too. Dinner came around and opting out of beef tenderloin I had my soup with avocado, a bite of spinach (turned out to be creamed so I didn't have more), and two bites of roasted potato. For dessert everyone had ice cream, except me, strawberries and cookies. We then drove home two of our friends and joined them for more wine (I sipped) and a piece of delicious pumpkin spice cake. We got home after midnight and my tummy felt really funny. David went to bed and so began...my nightmare of mystery stomach bug 2014.
The next day I could NOT get out of bed. Like at all. I slept in the guest room and that's where I've been quarantined every since. By choice. Of course. I had a fever, a high one but I was too achy, sore, tired, and out of it to even think of where to find a thermometer so I could verify. (It's in the medicine cabinet in the laundry room). I laid in bed ALL day. That was my day. Sleep. Get up to poop water. Gulp down water. Double over in pain from stomach cramping. Plop down on bed. Fall asleep. Repeat. Rinse. Repeat. Again and again and again....
In my head - "You should stayed on the fast!" and "You haven't had wine in months and see what happens when you do?" and "Did someone have the stomach flu or unknown flu recently and not tell someone at the dinner party?...could I get it that fast?'' and on and on.
The benefit to being a cancer patient is that you are constantly monitored. By later afternoon, around 4pm when I could actually sit up and think for a minute. A minute!! My mom brought me two huge nalgene's of water, some ultima electrolytes, and the kids ear thermometer - which said my temp was at 103.4. I emailed my health care team and told them so. "I think I have a stomach virus"...or "the flu". I had a flu shot at the end of September however and Philomena said that didn't sound right. I was ordered to take 1000mg of Tylenol every six hours and then come on that next morning for hydration at Tower Oncology. David came in to my quarters to ask me if he could do anything and I said "a rice cake"...which he brought me right away. It, unfortunately, sat there until the next day when I ate two bites of it. I texted other people from the party and two other girlfriends of mine were ill, David said his tummy was funny for a day but then fine. Other people were fine. Since my diet is so controlled I have to guess that it was from something I ate that night. The issue is that something that is small or easy for other's immune systems to purge out with a case or two of the runs can really wreak havoc on my weakened immune system from the rounds of chemo. I need to be more careful.
I went to Tower Monday morning. Can I tell you how much I do very much appreciate the fact that I have a port? Getting hydration was a breeze. I then had to provide vials of blood for several blood cultures and provide other "stuff" (alright, I'm going to say it...water poop and urine) for other kind of cultures. When I got on the scale I had lost five pounds since Friday. All water weight from being so dehydrated I'm sure. Anyway, I got the couple hours of hydration, went home and went back to my cycle of "rinse and repeat" for the next two days. I went back to Tower again on Wednesday. Still running a fever the entire time but managing it the best possible with Tylenol. Wednesday night Philomena calls me herself and chuckles then says, "Well, the cultures came back and it's positive for salmonella. I'm sending it over to Cedars so they can type the strain but we won't know that for a few days. Do you have an infectious disease doctor?" I'm sorry, WHY was that funny or deserving of a chuckle? I think she is just so shocked these days by the weirdness that happens in my case that she just doesn't know what to make of things. Anyway....I haven't seen an infectious disease doctor since the last port surgery over three years ago. She said she would contact one on my behalf and figure out what antibiotic to prescribe. I was so relieved but then also thought. Ugh! Food poisoning!! How ironic. The one week I can eat and I break by fast to get salmonella food poisoning. Unbelievable!
I have for the record never felt like this before, weak with fever, not able to eat, not able to function. It was difficult the first three days and now I feel like I am starting to come out of it. I can watch a movie in bed. I can walk around the house (that happened only after the third day). I am now sitting here paying bills and typing this blog update. I have two nights of my antibiotic under my belt. I have been able to eat with a growing time delay before the water poop takes over...things are looking up!
Anyway, this huge hiccup is getting in the way of me fighting cancer so I'm a bit perturbed. My chemo session for this Friday (today) is cancelled. This was my week to eat but I think I am still going to skip the next week of fasting for next Friday's chemo session. I'm waiting to hear back from the Dr. Longo's dietician.
In other news. My housekeeper watered my fake plants. That was weird. And disappointing. And funny. My kids are fucking awesome. I love them to pieces and it has been hard to stay away from them (at first because I thought I had the flu and then because I just didn't have the energy). It's glorious weather! I had my water this morning outside with some natural vitamin D from the sun. Ahhhhhhhh.
The next day I could NOT get out of bed. Like at all. I slept in the guest room and that's where I've been quarantined every since. By choice. Of course. I had a fever, a high one but I was too achy, sore, tired, and out of it to even think of where to find a thermometer so I could verify. (It's in the medicine cabinet in the laundry room). I laid in bed ALL day. That was my day. Sleep. Get up to poop water. Gulp down water. Double over in pain from stomach cramping. Plop down on bed. Fall asleep. Repeat. Rinse. Repeat. Again and again and again....
In my head - "You should stayed on the fast!" and "You haven't had wine in months and see what happens when you do?" and "Did someone have the stomach flu or unknown flu recently and not tell someone at the dinner party?...could I get it that fast?'' and on and on.
The benefit to being a cancer patient is that you are constantly monitored. By later afternoon, around 4pm when I could actually sit up and think for a minute. A minute!! My mom brought me two huge nalgene's of water, some ultima electrolytes, and the kids ear thermometer - which said my temp was at 103.4. I emailed my health care team and told them so. "I think I have a stomach virus"...or "the flu". I had a flu shot at the end of September however and Philomena said that didn't sound right. I was ordered to take 1000mg of Tylenol every six hours and then come on that next morning for hydration at Tower Oncology. David came in to my quarters to ask me if he could do anything and I said "a rice cake"...which he brought me right away. It, unfortunately, sat there until the next day when I ate two bites of it. I texted other people from the party and two other girlfriends of mine were ill, David said his tummy was funny for a day but then fine. Other people were fine. Since my diet is so controlled I have to guess that it was from something I ate that night. The issue is that something that is small or easy for other's immune systems to purge out with a case or two of the runs can really wreak havoc on my weakened immune system from the rounds of chemo. I need to be more careful.
I went to Tower Monday morning. Can I tell you how much I do very much appreciate the fact that I have a port? Getting hydration was a breeze. I then had to provide vials of blood for several blood cultures and provide other "stuff" (alright, I'm going to say it...water poop and urine) for other kind of cultures. When I got on the scale I had lost five pounds since Friday. All water weight from being so dehydrated I'm sure. Anyway, I got the couple hours of hydration, went home and went back to my cycle of "rinse and repeat" for the next two days. I went back to Tower again on Wednesday. Still running a fever the entire time but managing it the best possible with Tylenol. Wednesday night Philomena calls me herself and chuckles then says, "Well, the cultures came back and it's positive for salmonella. I'm sending it over to Cedars so they can type the strain but we won't know that for a few days. Do you have an infectious disease doctor?" I'm sorry, WHY was that funny or deserving of a chuckle? I think she is just so shocked these days by the weirdness that happens in my case that she just doesn't know what to make of things. Anyway....I haven't seen an infectious disease doctor since the last port surgery over three years ago. She said she would contact one on my behalf and figure out what antibiotic to prescribe. I was so relieved but then also thought. Ugh! Food poisoning!! How ironic. The one week I can eat and I break by fast to get salmonella food poisoning. Unbelievable!
I have for the record never felt like this before, weak with fever, not able to eat, not able to function. It was difficult the first three days and now I feel like I am starting to come out of it. I can watch a movie in bed. I can walk around the house (that happened only after the third day). I am now sitting here paying bills and typing this blog update. I have two nights of my antibiotic under my belt. I have been able to eat with a growing time delay before the water poop takes over...things are looking up!
Anyway, this huge hiccup is getting in the way of me fighting cancer so I'm a bit perturbed. My chemo session for this Friday (today) is cancelled. This was my week to eat but I think I am still going to skip the next week of fasting for next Friday's chemo session. I'm waiting to hear back from the Dr. Longo's dietician.
In other news. My housekeeper watered my fake plants. That was weird. And disappointing. And funny. My kids are fucking awesome. I love them to pieces and it has been hard to stay away from them (at first because I thought I had the flu and then because I just didn't have the energy). It's glorious weather! I had my water this morning outside with some natural vitamin D from the sun. Ahhhhhhhh.
Friday, February 14, 2014
Happy Valentine's Day
I think every day should be a day where we take the time to show our loved ones how much we love and appreciate them. It seems so simple but it's not. It's really a large task, isn't it? I notice that with the kids. I mean, really - why are they so much whinier and crankier with me than with anyone else? All the experts say it is because they are the most comfortable and safe with their parents so they act up to test the limits. Too often we neglect those closest to us. They can see the worst of us instead of the best of us. They are safe. They are comfortable. We can be cranky and whiney. We have to do our best to not take advantage of that. When David and I got married our Rabbi said we should practice giving our best to each other instead of our worst. It's so easy to come home after a long, hard day and just release the dragon and breathe fire on who ever happens to be around. Or conversely when we talk politely, calmly and patiently to strangers, acquantainces or people we are trying to impress... We are so interested in what they have to say. Wouldn't that energy be better served by giving it to those that really deserve it?
I try to remember this every day. Take a breath. Be patient. Be loving. Be kind. It's like that with ourselves too. I judge myself, too harshly all the time, I am impatient, unloving, unforgiving, and unkind to myself. I'm working hard to change that inner monologue. Whether you're religious or not, Valentine's is a good reminder to be loving to others and to ourselves. Thank you for taking this time to be with me, to read my blog and to care about me. I love you and I appreciate your support!!
I'm here at Tower Oncology getting my infusion. This starts the first round of my second cycle. I mean, what says "Love" more than poison in your veins? Am I right? Anyone...anyone... My blood counts were just at the brink of being too low but they approved me to go ahead. Woo hoo!
Oh, there was just one issue. Whomever did my scheduling at Tower and made my appointment forgot to add the notation that I am doing the cold caps. The cold caps require two days in the freezer to get cold enough (-32 degrees) which means they need to be put in the freezer Wednesday so I can get my chemo right on time on Friday morning. I arrived this morning and everyone is asking me "where's your caps?" Really, how the F-#$ do I know??!?! Turns out they were sitting at room temperature upstairs at Tower. Great. So there was a mad dash to figure out what the heck I could do. Turns out Gail, the wonderful therapist who changes my caps happened to bring some dry ice with her in her cooler that could help start to cool the caps. Then she went to smart-n-final to buy $55 more worth of dry ice to cool the others. Only two problems arose from this 1) I had to start chemo at 12 instead of 9, and 2) the caps weren't consistently cool under the dry ice, some parts would be -50 and others +18 so we figured out that we could chill them close to -50 then transfer them over to the fridge at my chair to make them equalize. It made for a stressful morning but I kept my "cool and it all worked out! Thank you to Gail for making it happen! She's truly a caring person and is so good at her job.
I've had some issues since my last post. I developed some issues due to the port. I have some cording in my arm and I started something called "Mondor's Disease" under my right breast. It's uncomfortable but I'm still able to keep up with my normal routine. Let me rephrase that. To be honest, my "normal" routine is just f-ing bananas. I would love to figure out more time to rest. But I love LIFE and all that it has to offer! I've been feeling fine despite the chemo but perhaps my body is saying, not really. You're not really feeling fine. You need to cut back and relax. Take more breaks. Do more yoga. Sit quietly. Do less. All right, all right. That's why this crap started in my veins.
So Mondor's Disease, which I was at first calling Mordor's Disease, as in the Lord of the Rings Mordor, is superficial thrombophlebitis. Super thrombawhaaaaat? Here's a link to a case study that better explains it. Superficial thrombophlebitis (Mondor's Disease) and here's a photo of what mine looks like. It runs from the bottom of my ribs up to my shoulder (which is hard to see since there is a boobie in the way... It is basically vein hardening and there is no harm that can come from this condition except discomfort if treated right away... So that's good news. I am continuing the coumadin, adding in extra ibuprofen (another blood thinner) and using a heating pad. All of this is to reduce inflammation that is most likely a result of the port surgery. I also have cording in my right arm where the port is that feels like tightness under my skin. I'm familiar with this since I worked all that cording out in my left arm for a little more than a year after my mastectomy. I truly dislike that I am becoming some sort of freak show medical case. I'm ready for all this to go away. And fast. I have a physical therapy appointment next Tuesday that I am looking forward to.
I started my fast like a good girl on Tuesday. I am totally fine doing it but I would really, really love to eat something. I mean really. Everything looks delicious. I fell asleep for two minutes in my chemo chair and I was dreaming of hamburgers. From Apple Pan. With French Fries and Chocolate Cream Pie. I haven't eaten that in the longest time. It's so interesting what food deprivation will do to your head. I'm sure if I ate that to break my fast I'd be in a world of hurt but my brain just says..."ME NEED FAT. ME NEED TASTY FOOD NOW...ME HUUUUNGRY!!!" (a la cookie monster).
The effects of my fast are...hunger. Ha ha ha ha. No in all seriousness, I notice that I am super duper spacey. I forget words and they take longer than normal for me to find the right word I want to say or eventually...poof!...the word is just gone and I'm stuck talking to someone looking like a deer caught in the headlights. ME HUNGRRRYYYY. NOM. NOM. NOM.
I try to remember this every day. Take a breath. Be patient. Be loving. Be kind. It's like that with ourselves too. I judge myself, too harshly all the time, I am impatient, unloving, unforgiving, and unkind to myself. I'm working hard to change that inner monologue. Whether you're religious or not, Valentine's is a good reminder to be loving to others and to ourselves. Thank you for taking this time to be with me, to read my blog and to care about me. I love you and I appreciate your support!!
I'm here at Tower Oncology getting my infusion. This starts the first round of my second cycle. I mean, what says "Love" more than poison in your veins? Am I right? Anyone...anyone... My blood counts were just at the brink of being too low but they approved me to go ahead. Woo hoo!
Oh, there was just one issue. Whomever did my scheduling at Tower and made my appointment forgot to add the notation that I am doing the cold caps. The cold caps require two days in the freezer to get cold enough (-32 degrees) which means they need to be put in the freezer Wednesday so I can get my chemo right on time on Friday morning. I arrived this morning and everyone is asking me "where's your caps?" Really, how the F-#$ do I know??!?! Turns out they were sitting at room temperature upstairs at Tower. Great. So there was a mad dash to figure out what the heck I could do. Turns out Gail, the wonderful therapist who changes my caps happened to bring some dry ice with her in her cooler that could help start to cool the caps. Then she went to smart-n-final to buy $55 more worth of dry ice to cool the others. Only two problems arose from this 1) I had to start chemo at 12 instead of 9, and 2) the caps weren't consistently cool under the dry ice, some parts would be -50 and others +18 so we figured out that we could chill them close to -50 then transfer them over to the fridge at my chair to make them equalize. It made for a stressful morning but I kept my "cool and it all worked out! Thank you to Gail for making it happen! She's truly a caring person and is so good at her job.
I've had some issues since my last post. I developed some issues due to the port. I have some cording in my arm and I started something called "Mondor's Disease" under my right breast. It's uncomfortable but I'm still able to keep up with my normal routine. Let me rephrase that. To be honest, my "normal" routine is just f-ing bananas. I would love to figure out more time to rest. But I love LIFE and all that it has to offer! I've been feeling fine despite the chemo but perhaps my body is saying, not really. You're not really feeling fine. You need to cut back and relax. Take more breaks. Do more yoga. Sit quietly. Do less. All right, all right. That's why this crap started in my veins.
So Mondor's Disease, which I was at first calling Mordor's Disease, as in the Lord of the Rings Mordor, is superficial thrombophlebitis. Super thrombawhaaaaat? Here's a link to a case study that better explains it. Superficial thrombophlebitis (Mondor's Disease) and here's a photo of what mine looks like. It runs from the bottom of my ribs up to my shoulder (which is hard to see since there is a boobie in the way... It is basically vein hardening and there is no harm that can come from this condition except discomfort if treated right away... So that's good news. I am continuing the coumadin, adding in extra ibuprofen (another blood thinner) and using a heating pad. All of this is to reduce inflammation that is most likely a result of the port surgery. I also have cording in my right arm where the port is that feels like tightness under my skin. I'm familiar with this since I worked all that cording out in my left arm for a little more than a year after my mastectomy. I truly dislike that I am becoming some sort of freak show medical case. I'm ready for all this to go away. And fast. I have a physical therapy appointment next Tuesday that I am looking forward to.
I started my fast like a good girl on Tuesday. I am totally fine doing it but I would really, really love to eat something. I mean really. Everything looks delicious. I fell asleep for two minutes in my chemo chair and I was dreaming of hamburgers. From Apple Pan. With French Fries and Chocolate Cream Pie. I haven't eaten that in the longest time. It's so interesting what food deprivation will do to your head. I'm sure if I ate that to break my fast I'd be in a world of hurt but my brain just says..."ME NEED FAT. ME NEED TASTY FOOD NOW...ME HUUUUNGRY!!!" (a la cookie monster).
The effects of my fast are...hunger. Ha ha ha ha. No in all seriousness, I notice that I am super duper spacey. I forget words and they take longer than normal for me to find the right word I want to say or eventually...poof!...the word is just gone and I'm stuck talking to someone looking like a deer caught in the headlights. ME HUNGRRRYYYY. NOM. NOM. NOM.
Wednesday, February 5, 2014
Strange results and Doing well!
I just finished my third infusion which completes my first "round" or cycle of this Abraxane treatment. I am pleased to say that I am doing very well on it. The first week was difficult. I felt like I was moving through molasses. Everything was foggy and I could barely walk my usual 2 mile loop around the neighborhood. As I walked I felt like a zombie, lunging side to side as I took each step. David was trying to have a conversation with me and I could barely form sentences and responses. I was so tired. I'm thinking that was the fasting and the port recovery not just the chemotherapy. I've adjusted since that first week and am tolerating this drug well.
Infusion two last week was when I was back to eating my normal Life Over Cancer and then some diet and the chemo wasn't as hard. They had talked about cutting the steroids from ten to five but had already hung the bag before I knew it...I still had the shakes but it wasn't as bad as when I was fasting the week before. At this third infusion we opted for NO steroids and I feel fine. I don't know what it is but I really feel like this fasting is working. This last fast, the second, was much harder. Dr. Longo was concerned about my BMI being too close to 18 so he opted for me to switch from the ChemoLieve fast (a four day fast with 1200, 300x3 calorie plan) to the ProLon diet (a five day 1050, 500x4 calorie plan). I thought, what?!? More fasting days but more calories is still one more fasting day AND fasting the day after chemo. Alright, but I'm a team player so I did it. I sure am glad I did.
I feel great after this last round of chemo and fasting. Saturday I napped for a good amount of the day and then felt better by the evening. I broke my fast that night since David and I had the ballet (Giselle, which was amazing and I cried at the end it was so beautiful) and we made it a date night with dinner. I broke the fast with two miso soups, sauteed veggies in ponzu and steamed mushrooms with two bites of sashimi. Everything tasted so amazing and I have NO nausea. In fact I am eating everything in site. There's nothing I won't eat (that's still part of my healthy diet).
I found the original 2009 case studies for fasting with cancer that Dr. Valter Longo and his colleagues published. It explains A LOT. I am so thrilled that I am doing the fasting...
This blog provides an wonderful explanation in layman's terms:
Mark's Daily Apple - Fasting and Cancer
For the actual 2009 study, please visit the following link:
Fasting and cancer treatment in humans: A case series report 2009
This is my chemo off week so I'm just cruising along and feeling great. Working out. I have good energy. Bulking back up (a joke since I only lost two pounds and I've already added that back on). I'm actually not feeling the neuropathy like I was last week (during the non-fasting week) which is nice. The top of my right foot and a couple of toes on each foot felt very tingly all last week.
We do have some confusing results however and Philomena is very perplexed. It's her job to remain skeptical though, right? By all indications my blood chemistry shows that two important tests the LDH (a lactate dehydrogenase isoenzyme, a test that determines levels of possible tissue and organ damage/disease - LDH 5 tests for liver disease) and the AST (Aspartate aminotransferase, a test that determines liver diseases) have come down significantly so we assumed that the tumor markers would also be coming down. My LDH (normal range is 313-618) was 1306 before I started chemo and is now 620. My AST (normal range is 15-46) was 77 before I started and is now 52. My tumor markers were analyzed for the first time since I started the Abraxane chemotherapy as well. They take longer so I didn't have the results until Philomena called me that night. She said that one of the tumor markers jumped up considerably but the other went down. She said has never seen that before except on two occasions 1) in people in kidney failure (which is not the case) and 2) in people who have never been in treatment for breast cancer but take tamoxifen preventatively. Their numbers will jump up before they go back down. She said that she would send the blood over to Cedars' lab to double check but that since she's never had a patient who has been fasting she thinks that the marker tests may be unreliable for me. We'll just have to see what does or doesn't light up in the scans in another 5-6 weeks. She said she's not sure what to make of it.
We'll retry tumor markers on the 14th when I start my next cycle again. However, since I'll be fasting that week again, I'm going to see if we should just wait until the following week when I am NOT fasting to see if it makes a difference. What I feel deep down is that this is working, I am making my body a hostile environment for the cancer cells and I'm also making the cancer "stick out" to the chemotherapy drugs so that they can work more efficiently. Time will tell!!
I feel like I am engaging in Guerilla warfare. It's exciting. I'm a guinea pig or a laboratory rat which is a mixed bag but all in all I'm excited at the prospect that I am doing everything I can to kill cancer.
I met with Dr. Kenneth Conklin at UCLA. He's an M.D./Ph.D. that specializes in Integrative Oncology and helps patients find the right combination of supplements that helps the body strengthen the innate immune system while undergoing cancer treatment. It was a two hour long session that was incredibly fascinating and informative. He is a brilliant doctor. I left with a new diet regime - the only thing different from what I have been doing is now NO GLUTEN, NO SOY and adding back in CHICKEN and TURKEY sparingly. He advocates proteins, lots of whole fruits and veggies (diet should consist of primarily complex carbohydrates) and minimal grains. I also left with a huge bag of supplements after visiting the UCLA pharmacy. I am working on how to divide and conquer this regime. It's a lot to take. I mean a whole lot all day long. I'm working on a spreadsheet and pill organizer system that will make it easier to manage. I will do this on my non-fasting weeks and only some during my fasting weeks.
Oh, and I still have my hair. I've passed the 20 day mark where I lost all mine before. The cold cap therapy is working. There's been more shedding than normal but no huge clumps like I experienced in the past. But now I have to figure out if I want to continue since there are cases where patients are on Abraxane for a year...if I do that it will cost a small fortune... Next Tuesday starts another fasting week for the infusion on the 14th. Fight on!!!
Infusion two last week was when I was back to eating my normal Life Over Cancer and then some diet and the chemo wasn't as hard. They had talked about cutting the steroids from ten to five but had already hung the bag before I knew it...I still had the shakes but it wasn't as bad as when I was fasting the week before. At this third infusion we opted for NO steroids and I feel fine. I don't know what it is but I really feel like this fasting is working. This last fast, the second, was much harder. Dr. Longo was concerned about my BMI being too close to 18 so he opted for me to switch from the ChemoLieve fast (a four day fast with 1200, 300x3 calorie plan) to the ProLon diet (a five day 1050, 500x4 calorie plan). I thought, what?!? More fasting days but more calories is still one more fasting day AND fasting the day after chemo. Alright, but I'm a team player so I did it. I sure am glad I did.
I feel great after this last round of chemo and fasting. Saturday I napped for a good amount of the day and then felt better by the evening. I broke my fast that night since David and I had the ballet (Giselle, which was amazing and I cried at the end it was so beautiful) and we made it a date night with dinner. I broke the fast with two miso soups, sauteed veggies in ponzu and steamed mushrooms with two bites of sashimi. Everything tasted so amazing and I have NO nausea. In fact I am eating everything in site. There's nothing I won't eat (that's still part of my healthy diet).
I found the original 2009 case studies for fasting with cancer that Dr. Valter Longo and his colleagues published. It explains A LOT. I am so thrilled that I am doing the fasting...
This blog provides an wonderful explanation in layman's terms:
Mark's Daily Apple - Fasting and Cancer
For the actual 2009 study, please visit the following link:
Fasting and cancer treatment in humans: A case series report 2009
This is my chemo off week so I'm just cruising along and feeling great. Working out. I have good energy. Bulking back up (a joke since I only lost two pounds and I've already added that back on). I'm actually not feeling the neuropathy like I was last week (during the non-fasting week) which is nice. The top of my right foot and a couple of toes on each foot felt very tingly all last week.
We do have some confusing results however and Philomena is very perplexed. It's her job to remain skeptical though, right? By all indications my blood chemistry shows that two important tests the LDH (a lactate dehydrogenase isoenzyme, a test that determines levels of possible tissue and organ damage/disease - LDH 5 tests for liver disease) and the AST (Aspartate aminotransferase, a test that determines liver diseases) have come down significantly so we assumed that the tumor markers would also be coming down. My LDH (normal range is 313-618) was 1306 before I started chemo and is now 620. My AST (normal range is 15-46) was 77 before I started and is now 52. My tumor markers were analyzed for the first time since I started the Abraxane chemotherapy as well. They take longer so I didn't have the results until Philomena called me that night. She said that one of the tumor markers jumped up considerably but the other went down. She said has never seen that before except on two occasions 1) in people in kidney failure (which is not the case) and 2) in people who have never been in treatment for breast cancer but take tamoxifen preventatively. Their numbers will jump up before they go back down. She said that she would send the blood over to Cedars' lab to double check but that since she's never had a patient who has been fasting she thinks that the marker tests may be unreliable for me. We'll just have to see what does or doesn't light up in the scans in another 5-6 weeks. She said she's not sure what to make of it.
We'll retry tumor markers on the 14th when I start my next cycle again. However, since I'll be fasting that week again, I'm going to see if we should just wait until the following week when I am NOT fasting to see if it makes a difference. What I feel deep down is that this is working, I am making my body a hostile environment for the cancer cells and I'm also making the cancer "stick out" to the chemotherapy drugs so that they can work more efficiently. Time will tell!!
I feel like I am engaging in Guerilla warfare. It's exciting. I'm a guinea pig or a laboratory rat which is a mixed bag but all in all I'm excited at the prospect that I am doing everything I can to kill cancer.
I met with Dr. Kenneth Conklin at UCLA. He's an M.D./Ph.D. that specializes in Integrative Oncology and helps patients find the right combination of supplements that helps the body strengthen the innate immune system while undergoing cancer treatment. It was a two hour long session that was incredibly fascinating and informative. He is a brilliant doctor. I left with a new diet regime - the only thing different from what I have been doing is now NO GLUTEN, NO SOY and adding back in CHICKEN and TURKEY sparingly. He advocates proteins, lots of whole fruits and veggies (diet should consist of primarily complex carbohydrates) and minimal grains. I also left with a huge bag of supplements after visiting the UCLA pharmacy. I am working on how to divide and conquer this regime. It's a lot to take. I mean a whole lot all day long. I'm working on a spreadsheet and pill organizer system that will make it easier to manage. I will do this on my non-fasting weeks and only some during my fasting weeks.
Oh, and I still have my hair. I've passed the 20 day mark where I lost all mine before. The cold cap therapy is working. There's been more shedding than normal but no huge clumps like I experienced in the past. But now I have to figure out if I want to continue since there are cases where patients are on Abraxane for a year...if I do that it will cost a small fortune... Next Tuesday starts another fasting week for the infusion on the 14th. Fight on!!!
Saturday, January 18, 2014
First Infusion Day
We went to Houston on Wednesday evening, which was on the end of my second day on 300 calories during the fast. I was worried about traveling because of all the food and smells at the airport and on the plane but it was rather easy. We couldn't get any flights that worked with our timing so we ended up in "first class" on an airline I've never heard of...Spirit Airlines. Well I wouldn't really call it an airline except that it does fly planes with passengers and gets you to your destination. Everything is a charge up. It's like going to one of those manicure/pedicure places where everything is $5 dollars more. Oh you want a water? That will be three dollars. Even in first class, its not first class. It's the "big seat" as they call it but you DO get to bypass security as a "first class" passenger which is worthwhile. Anyway, I digress. It was actually good because the flight attendants weren't making smelly food for people and the food that people brought with them on board smelt greasy which I wouldn't have eaten anyway. David ate in front of me the next day at the hospital and I had my "soup" and I did just fine. I had to supplement days 2 and 3 with 5 almonds (38 calories) so I could take my medicines but other than that I stuck it out.
Houston results: nothing earth shattering. After an exam they said that my liver, despite the lesions, felt normal and the blood work shows normal liver function. Good news. They agreed with Dr. McAndrew's suggestion of Abraxane. Three weeks on, one week off that equals one cycle. After two cycles then they want scans, and of course monitoring of tumor markers through blood work.
My first infusion day was Friday at Tower, we showed up at 8:15 and as I checked in I asked who my nurse was and of course, it was Mary Lou. She is my rock! Everything went fine. Port access was a breeze thanks to her, it was very smooth. I was talking to a staff member while they put the cold spray then inserted the Huber needle. Piece of cake. I was very worried about it. Here's what my arm looks like after the port placement and difficulty. He said there would be some bruising but it looks worse than it feels (although I'm not really doing much with that arm for the next two weeks so I can't be sure). I can now sleep on it and it isn't too sore which is a godsend when you are a side sleeper.
David took me to the infusion, my hero since he has been missing a lot of work to take care of me. Apparently he told me they like when he is out of the office though since he is "grouchy" when he is there...poor guy. He's got a lot on his plate. He was a trooper and very helpful so it was nice to have him there at the first infusion.
Since Cedars has taken over Tower Oncology things are a little different. They have an on-sire family therapist and social worker, on on-site nutritionist and dietician, insurance and billing staff, and more. It was a little odd that all these people kept coming over but all in all it was very welcoming. A sort of welcome back and look at all these things we have to offer now!
After the port access went so smooth, the only thing I was really worried about was the Penguin cold cap therapy. I have very mixed views on it. It is expensive and a huge hassle. I am doing it to keep things looking normal for the kids because I think now at Abby's age she would really understand that things were very different if I lost my hair. You can hire someone to be there at your infusions to change each cap for you because it must be done quick and every 30 minutes. It's very precise. The woman who helped me, Gail, was lovely and very helpful. The goal is to keep your scalp at -22 degrees. Here's what I looked like with the cold cap on.
So once I was finished by 11AM, I had to stay until 3pm so we could continue to apply the cold caps to my scalp. My scalp got very numb and it wasn't every very uncomfortable. They give you a nice warm electric blanket to keep you warm. I will tell you though that given everything I have been through I can handle a lot. It's like "oh you want me to do what?...yeah, bring it on"... So we'll see how this goes. I plan to do it this first month but given that my infusion is so short I would kind of rather just lose my hair and wear my wig. I'm taking it to my hair girl to have it touched up so it doesn't look like last time with that thick bang fringe and all one color. I have highlights now so it needs to look somewhat the same...
I got a nice visit from another stage IV cancer thriver Paige and it was so awesome to finally meet her in person and give her a hug. We have a lot in common and I hope we can rely on each other for years and years and years while we go through this journey and raise our little ones. Love you Paige!!
I was so thrilled to start the transition back to a normal diet. I did yesterday, however, re-read portions of Keith Block's "Life Over Cancer" book and am adhering to a strict diet while off the fast. Anything I can do to shrink this cancer and get it gone for good I am doing.
Over and out.
Houston results: nothing earth shattering. After an exam they said that my liver, despite the lesions, felt normal and the blood work shows normal liver function. Good news. They agreed with Dr. McAndrew's suggestion of Abraxane. Three weeks on, one week off that equals one cycle. After two cycles then they want scans, and of course monitoring of tumor markers through blood work.
My first infusion day was Friday at Tower, we showed up at 8:15 and as I checked in I asked who my nurse was and of course, it was Mary Lou. She is my rock! Everything went fine. Port access was a breeze thanks to her, it was very smooth. I was talking to a staff member while they put the cold spray then inserted the Huber needle. Piece of cake. I was very worried about it. Here's what my arm looks like after the port placement and difficulty. He said there would be some bruising but it looks worse than it feels (although I'm not really doing much with that arm for the next two weeks so I can't be sure). I can now sleep on it and it isn't too sore which is a godsend when you are a side sleeper.
David took me to the infusion, my hero since he has been missing a lot of work to take care of me. Apparently he told me they like when he is out of the office though since he is "grouchy" when he is there...poor guy. He's got a lot on his plate. He was a trooper and very helpful so it was nice to have him there at the first infusion.
Since Cedars has taken over Tower Oncology things are a little different. They have an on-sire family therapist and social worker, on on-site nutritionist and dietician, insurance and billing staff, and more. It was a little odd that all these people kept coming over but all in all it was very welcoming. A sort of welcome back and look at all these things we have to offer now!
After the port access went so smooth, the only thing I was really worried about was the Penguin cold cap therapy. I have very mixed views on it. It is expensive and a huge hassle. I am doing it to keep things looking normal for the kids because I think now at Abby's age she would really understand that things were very different if I lost my hair. You can hire someone to be there at your infusions to change each cap for you because it must be done quick and every 30 minutes. It's very precise. The woman who helped me, Gail, was lovely and very helpful. The goal is to keep your scalp at -22 degrees. Here's what I looked like with the cold cap on.
I got the premeds, one for anti-naseau and some steroids, you know how I feel about those. I told them I thought you didn't need steroids with the Abraxane since it is encapsulated in fat and they said it was only a tiny amount...(Flash forward from infusion yesterday to this morning where I was up at 4:30 AM because of our house alarm and couldn't fall back asleep to the preparing an elaborate breakfast - roasted apples with agave and cinnamon, Dr. Mao's beautiful hot cereal, oatmeal and berries, paid bills, fixed the calendar, returned emails, played with kids...and on and on). They should not ever give me steroids. ROIDS!!!! Anyway, the actual abraxane infusion is only 30 minutes. When they give you the Abraxane they cover your hands and feet in ice packs since it tends to cause bad neuropathy in extremities. Here's a photo of me in those.
So once I was finished by 11AM, I had to stay until 3pm so we could continue to apply the cold caps to my scalp. My scalp got very numb and it wasn't every very uncomfortable. They give you a nice warm electric blanket to keep you warm. I will tell you though that given everything I have been through I can handle a lot. It's like "oh you want me to do what?...yeah, bring it on"... So we'll see how this goes. I plan to do it this first month but given that my infusion is so short I would kind of rather just lose my hair and wear my wig. I'm taking it to my hair girl to have it touched up so it doesn't look like last time with that thick bang fringe and all one color. I have highlights now so it needs to look somewhat the same...
I got a nice visit from another stage IV cancer thriver Paige and it was so awesome to finally meet her in person and give her a hug. We have a lot in common and I hope we can rely on each other for years and years and years while we go through this journey and raise our little ones. Love you Paige!!
I was so thrilled to start the transition back to a normal diet. I did yesterday, however, re-read portions of Keith Block's "Life Over Cancer" book and am adhering to a strict diet while off the fast. Anything I can do to shrink this cancer and get it gone for good I am doing.
Over and out.
Tuesday, January 14, 2014
Day One
Day one of fast went great. 1200 calories today. I like the food. I feel like an astronaut since it is all dehydrated...all you do is add water and voila - soup. Days two, three and four are only 300 calories. Hopefully you don't find me out in the yard trying to eat bark off the tree.... Leaving for MD Anderson tomorrow afternoon. Poor David is really scuuuurrreeeed to travel with me while fasting....
Monday, January 13, 2014
Deja vu
Yes, it's 2014 but I'm going back in time to 2010. I'm going back on IV chemotherapy. The Afinitor/Aromasin combination did not work for me. The Xeloda worked much better because I had shrinkage of the liver tumors and lymph nodes but moderate progression in the bones. When I left MD Anderson in October, three months ago, they seemed confident that this new FDA approved drug has been working "very" well for many people with advanced stage disease and that it should work for me. I feel it made mine worse. The results from the scans last week showed progression in the bones, lymph and liver (including NEW fucking lesions in the liver). Dr. McAndrew feels that it could possibly be two different "populations" of cancer - one that is ER+ and another that we haven't biopsied and identified yet. It has been a whirlwind period since Friday when I got the news and immediately went on the attack to find information to save my life.
As a reminder that is exactly what I am trying to do - SAVE MY LIFE. This is serious business. This is all hands on deck. I don't understand why the cancer likes my body so much. Guess what cancer? You are not welcome. To adapt one of my favorite lines from the Princess Bride: "My name is Jessica Berman. You killed my livelihood. Prepare to die"...
Here are updates:
As a reminder that is exactly what I am trying to do - SAVE MY LIFE. This is serious business. This is all hands on deck. I don't understand why the cancer likes my body so much. Guess what cancer? You are not welcome. To adapt one of my favorite lines from the Princess Bride: "My name is Jessica Berman. You killed my livelihood. Prepare to die"...
Here are updates:
- I got my port installed this morning. This was almost, but not quite, as horrific an experience as last time. This time I got to use the fluoroscope machine for placement but the problem is that the last port caused scarring and damage to the veins in my arm. I requested the best doctor at the procedure center since I didn't trust Wittanable who did it last time (and of course who do you think they scheduled me with for the procedure, yep, Wittanable). Through this process I have learned to be my own advocate (so sorry to hurt your feelings Dr. W) but I wasn't going to let him install this port. I was told Dr. Ng was the best and after much waiting he was who placed the port. He tried for quite a long time, it just wasn't going through. It kept getting stuck in my clavicle/shoulder area. Well, he tried a few wires and yanked my arm a bit and got it through. If he hadn't I would have been cut open for nothing and then got scheduled for port placement in the operating room under anesthesia. Thank the Lord for watching over me in there today.
- Due to the port being in a tight vein or having that difficulty they are placing me on the lowest dose of coumadin. Did you know coumadin is controversial at these low doses as to its efficacy and was originally a form of rat poison? Yippee.
- I have also worked tirelessly with the help of several people to get in contact with Dr. Valter Longo regarding his study for fasting while receiving IV chemotherapy to increase efficacy and reduce side effects of treatment. Over the course of Friday evening with the help of my sorority sister Karen, and two friends Rebecca and Liz through connections at USC and CHLA I was able to 1) learn about the study; 2) learn I didn't qualify (from which I sank into a black hole) and then 30 minutes later 3) learn that Dr. Longo and his registered dietitian on the study would guide me through the study without being a participant in the actual NCI study. I cried tears of joy and was shaking because of that stupid roller coaster. It is emotionally suspenseful and exhausting. One minute you are running to catch the bus but...crap, you hopped on the wrong bus, get off and a free luxury shuttle offer you a free ride to save the day. STRESSFUL.
- I am now meeting the RD to go over the fasting protocol and will then start the fast tomorrow.
- I have done all the work and paid for the penguin cold cap therapy to try during my infusions so I can keep my hair. At this point I don't really care that much about my hair, I felt fine with the wig last time but I think the more I stay looking the same the less the kids will be curious and concerned about my treatment.
- I am flying Wednesday late afternoon to Houston for a Thursday AM appointment at MD Anderson to seek a second opinion on the next course of treatment. Dr. McAndrew recommended Abraxane (over Gemzar, Halaven, Navalbene, and Exempra).
- I am not interested in getting into a stage 2 or 3 trial. I am more interested in the tried and true drugs that have proven to kick the crap out of cancer's butt (even though the side effects are more challenging).
- I think the oophorectomy isn't needed any more. I am still doing the lupron injections in the meantime to suppress the ovaries. Still waiting for an opinion on that.
- I'm wondering if there is a way to biopsy the bone lesions to see if the cancer has changed receptors or form thus the liver lesions responding to treatment but the bone lesions increasing their activity.
- As a result of all this research, emailing, phone calls, scheduling, surgery, emotional roller coaster that causes fatigue and mild depression I haven't spent much time with the kids and it makes me crazy. I miss them and wish I could get this resolved so I can focus on what REALLY matters to me. This family. These kids.
- I am scheduled for my first infusion this Friday at 8:30AM at Tower with the cold caps but not entirely sure which chemo I will be having...The infusion with cold cap therapy can take 8 hours. I will be there all day. Another day away from the kids AND after being gone Wednesday through Thursday. I hope I have time and feel well enough (strike that) - I plan to be with them for dinner Thursday night and sing silly songs before bed.
Sunday, January 5, 2014
Natural disasters...
I have this strange obsession with movies about the end of the world. I'm talking about crazy, natural disasters that expose what it means to be part of mankind. Movies that make you feel that you are really only a small, insignificant piece of a vast and expanding universe. For some reason, this gives me a macabre sense of peace because if anyone were to die this way, it wouldn't matter who, if anyone, was rich or poor; smart or dumb, good or evil, sick or healthy...
Some of my favorite disaster movies are 2012; the Day After Tomorrow; and Deep Impact. Of course there is also my go to science fiction favorites like Contact, Independence Day and my absolute newest favorite, Gravity. There's an element of surprise to a swift exit like a natural disaster. No drawn out good byes or lengthy fights for survival. It feels totally random who lives and who dies. The wrath of mother nature instead of the wrath of years and years of chemotherapy and the like...
Really, what I have is a certain preoccupation with death and dying; and what that means about life and living. In these movies there are two types of reactions; those that stay and wait to let the disaster take them from this life. As in those that see the wall of water or flying meteor coming and embrace those they love for impact. Or there are those that run away towards safety hoping with every fiber of their being to survive.
How appropriate that as I start to sit and type this blog entry about my preoccupation with dying that on the TV in the background is "Meet Joe Black"... Another movie I really enjoy. Death as a kid in a suit.
I think that what's so difficult for me is that I am not actually afraid of the death and dying part. Dying means letting go and resting in peace. I am more afraid of what I will be missing when I am gone. I still want to have some control over things here that are important to me!!! I have been very blessed and privileged in this life. There are things I will miss dearly. I'm not talking about the creature comforts even though they have been most wonderful. The most important thing I will miss is being with this family. Being with my kids and watching them grow up. I so desperately want to be involved in their lives as long as possible. To teach them. To be there when they ask "why" and "why not"...To help them form into little empathetic, intelligent, and compassionate people that can make respectable decisions. Help them learn. Help them find their passions. Watch them make mistakes. See who their friends are. See who they become. See what their interests are. Watch them fall in love. Watch them build their own lives and achieve their own successes and failures. I want to be William Parrish telling his daughter Susan to seek passion and love and happiness.
What provides me some peace is that I know I have lived and continue to live my life doing things and being with people that make me happy. I worked hard in school despite the usual hiccups like mean girls, hormones and boy drama to graduate high school and go to college. I worked hard in college to get the right internship, the right degrees and the right job post graduation. I sacrificed fun, good relationships, various opportunities trying to make my way in the world and to find out what did and didn't make me happy. I am still working on that today. I fell in love a couple of times, I broke hearts and got mine broken too. I learned to take care of myself. I got lucky sometimes but I worked hard too. I learned that I didn't "need" a man to make it in this world but that I wanted one to share this life with. I got married and had three wonderful babies. I experienced grief and pain beyond anything I could have imagined when we lost our son. At the same time I gave thanks that I had a beautiful little girl that needed me to help ease that pain. Oh I how love watching her grow into this independent, curious little being. And then to be blessed with another son, how amazing. Even though he might struggle in this life I know that he will overcome his difficulties and shine to become a brave little warrior. I hope that as I march down this path as a warrior myself that I impart that spirit and drive into my children. Don't give up. I love knowing that they will always have each other for support too.
At this moment I wonder about the quality of life I will continue to have during treatment. When I learned over a year ago about a local woman who passed away from cancer after an 11 year fight I kept thinking, is that what it is going to be for me? Will this be a decade or more of fight? Could I be so lucky? Could I endure it? How exhausting. How exhausted she must have been. Right to the very end. Fighting. Struggling. Hoping. And then eventually knowing that it was the end. No more tomorrows.
I keep asking myself. Who will I be? The person who stops and watches the disaster take place? Or the one who runs up the mountain hoping to survive? I already know the answer.
Some of my favorite disaster movies are 2012; the Day After Tomorrow; and Deep Impact. Of course there is also my go to science fiction favorites like Contact, Independence Day and my absolute newest favorite, Gravity. There's an element of surprise to a swift exit like a natural disaster. No drawn out good byes or lengthy fights for survival. It feels totally random who lives and who dies. The wrath of mother nature instead of the wrath of years and years of chemotherapy and the like...
Really, what I have is a certain preoccupation with death and dying; and what that means about life and living. In these movies there are two types of reactions; those that stay and wait to let the disaster take them from this life. As in those that see the wall of water or flying meteor coming and embrace those they love for impact. Or there are those that run away towards safety hoping with every fiber of their being to survive.
How appropriate that as I start to sit and type this blog entry about my preoccupation with dying that on the TV in the background is "Meet Joe Black"... Another movie I really enjoy. Death as a kid in a suit.
William Parrish: It's hard to let go, isn't it?
Joe Black: Yes it is, Bill.
William Parrish: What can I tell you? That's life....
William Parrish: Should I be afraid?
Joe Black: Not a man like you.
William Parrish: It's not what you say about Drew, it's what you don't say.
Susan Parrish: Maybe you're not listening.
William Parrish: Oh yes, I am. There's not an ounce of excitement. Not a whisper of a thrill. This relationship has all the passion of a pair of tit mice. I want you to get swept away out there. I want you to levitate. I want you to sing with rapture and dance like a Dervish.
Susan Parrish: Oh, that's all?
William Parrish: Yeah. Be deliriously happy or at least leave yourself open to be.
Susan Parrish: Okay. Be deliriously happy. I shall... uhh... I shall do my utmost.
William Parrish: I know it's a cornball thing, but love is passion. Obsession. Someone you can't live without. I say fall head over heels. Find someone you can love like crazy, and who'll love you the same way back. How do you you find 'em? Well, you forget your head and you listen to your heart. I'm not hearing any heart. Because the truth is, honey, there's no sense living your life without this. To make the journey and not fall deeply in love, well, you haven't lived a life at all. But you have to try, because if you haven't tried, you haven't lived.
I think that what's so difficult for me is that I am not actually afraid of the death and dying part. Dying means letting go and resting in peace. I am more afraid of what I will be missing when I am gone. I still want to have some control over things here that are important to me!!! I have been very blessed and privileged in this life. There are things I will miss dearly. I'm not talking about the creature comforts even though they have been most wonderful. The most important thing I will miss is being with this family. Being with my kids and watching them grow up. I so desperately want to be involved in their lives as long as possible. To teach them. To be there when they ask "why" and "why not"...To help them form into little empathetic, intelligent, and compassionate people that can make respectable decisions. Help them learn. Help them find their passions. Watch them make mistakes. See who their friends are. See who they become. See what their interests are. Watch them fall in love. Watch them build their own lives and achieve their own successes and failures. I want to be William Parrish telling his daughter Susan to seek passion and love and happiness.
What provides me some peace is that I know I have lived and continue to live my life doing things and being with people that make me happy. I worked hard in school despite the usual hiccups like mean girls, hormones and boy drama to graduate high school and go to college. I worked hard in college to get the right internship, the right degrees and the right job post graduation. I sacrificed fun, good relationships, various opportunities trying to make my way in the world and to find out what did and didn't make me happy. I am still working on that today. I fell in love a couple of times, I broke hearts and got mine broken too. I learned to take care of myself. I got lucky sometimes but I worked hard too. I learned that I didn't "need" a man to make it in this world but that I wanted one to share this life with. I got married and had three wonderful babies. I experienced grief and pain beyond anything I could have imagined when we lost our son. At the same time I gave thanks that I had a beautiful little girl that needed me to help ease that pain. Oh I how love watching her grow into this independent, curious little being. And then to be blessed with another son, how amazing. Even though he might struggle in this life I know that he will overcome his difficulties and shine to become a brave little warrior. I hope that as I march down this path as a warrior myself that I impart that spirit and drive into my children. Don't give up. I love knowing that they will always have each other for support too.
At this moment I wonder about the quality of life I will continue to have during treatment. When I learned over a year ago about a local woman who passed away from cancer after an 11 year fight I kept thinking, is that what it is going to be for me? Will this be a decade or more of fight? Could I be so lucky? Could I endure it? How exhausting. How exhausted she must have been. Right to the very end. Fighting. Struggling. Hoping. And then eventually knowing that it was the end. No more tomorrows.
I keep asking myself. Who will I be? The person who stops and watches the disaster take place? Or the one who runs up the mountain hoping to survive? I already know the answer.
Friday, January 3, 2014
Health in 2014
Happy New Year!
I have to say that it is nice to eat healthy, be sober and exercise regularly. Then when people ask you if you have any resolutions you don't have to stretch to anything too demanding or pie-in-the-sky. What I would wish for more than anything in 2014 is for great health. My goal is to become NED, which is an acronym for "no evidence of disease". Since my last post I have just stayed very busy with life, the usual things plus the addition of holidays, hanukkah and Thanksgiving that bled into Abby's birthday celebration at school then our trip to New York and then Leo's birthday celebrations at school and at home followed by Christmas and New Years...it has been very busy.
I have started to utilize the Stage IV message boards on the breastcancer.org website and they have been a god-send. It is so wonderful to connect with women who understand what it is like to live with this disease and all the various treatments. They offer advice, what has and hasn't worked for them, they check in on other members that are actively posting but then disappear for sometime (all of us having the same fear that perhaps they aren't posting anymore for the worst possible reason) and support each other. They share hopes and joys, tips and experiments and research, research, and research. I have been pouring over a ton of research that is a result of information I find on these boards. Thank you!!
Each member that posts on the boards has to have a profile. The profile lists your medical information and will look like something like this:
Dx 7/10/2012, IDC, 6cm+, Stage IIIa, Grade 3, 2/2 nodes, ER+/PR+, HER2+Dx 8/2013, IDC, Stage IV, mets, ER+Surgery Mastectomy (Right); Lymph Node Removal: Sentinel Lymph Node Dissection (Right)Chemotherapy 09/11/2012 Adriamycin, Cytoxan, TaxolTargeted Therapy 11/01/2012 HerceptinRadiation Therapy 02/28/2013 ExternalHormonal Therapy 05/28/2013 TamoxifenRadiation Therapy 09/09/2013 ExternalSurgery 10/17/2013 Prophylactic Ovary Removal (Both)Chemotherapy 11/01/2013 TaxotereTargeted Therapy 11/01/2013 Perjeta
OR
OR
OR
This is my profile:
I have been living in the dark as far as the cancer details go. I haven't been reading my reports. I remember Dr. Mao telling me of studies where researchers told various cancer patients that they were either fine or not on a piece of paper (even though they were all in the same health position) and those that were told good news went on to be happier and do better that those who were given the (fake) bad news. I am so conflicted. I decided a few weeks ago to read my report after I got a call from my oncologist saying that my tumor markers are still on the up tick. Apparently they are still rising but the rate at which they are rising seems to be slowing some (but not enough in her opinion). I am scheduled for scans on January 8th.
I tried going up to the 7.5mg of Afinitor and I can't do it. The mouth sores come back after two or three days. I had such a great time finally meeting and spending quality time with another Stage IV survivor Stefanie, whom I had previously talked to when I was first diagnosed with mets and who seriously scared the bejesus out of me back then...but she is the most radiant, spiritual and beautiful person inside and out and I'm thrilled to have her in my corner. She was just diagnosed with her third recurrence and before she decided to try the Afinitor/Aromasin ("A/A") combo she connected with other Stage IV women who had provided a list of pros and cons. I am so happy that she sent me that list because I learned that some women were having good results on the A/A combo and on the 5mg dose. SO...I emailed Dr. McAndrew and my MD Anderson oncologist Dr. Moulder and asked what dose I should be on. Dr. Moulder came back with 5mg. Dr. McAndrew came back with 7.5mg because she thought that I wanted to up my dose from 5mg....ugh. I am NOT the medical professional here. I want to kill cancer but I also want quality of life. I'm certainly not qualified to make decision on my medications so why does why leave it up to me?!?!? Anyway, I've also noticed wheezing in my lungs while on the A/A combo and according to the list of A/A combo women some experience lung damage (a major side effect listed is lung and/or breathing problems) so why if I am already having wheezing would I want to up the dose? So yeah, I'm staying on the 5mg and if it isn't working (I'll know end of next week) then we are switching to some kind of chemotherapy instead of "targeted" therapy like A/A.
I have been having a lot of bone pain. I have been walking a ton as my regular exercise. I haven't done much ballet or anything else. With the kids being out of school it is much simpler to walk with them or bike with them to keep in shape and keep them entertained at the same time. When I saw Dr. McAndrew and told her about the bone pain she immediately ordered a bone scan. I had that right before Christmas. Merry Christmas! The scans showed that there wasn't much change from the Pet/CT I had 2 months ago and that the smaller lesions that showed on the scan didn't show on the Bone Scan. I think that is good news but I can't tell for sure; Dr. McAndrew called when I had just fallen asleep so I can't remember the whole conversation. Typical. However, something I learned through Stefanie's list and through my message boards is that the second A in the A/A combo, aromasin causes major joint and bone aches. That made me feel so much better. It's very disheartening when every little bone or muscle ache gets immediately attributed to the big C. Instead, it could be one of the many medications I took and am taking that could cause me to feel like a centenarian.
I sat down and printed out a diagram of a skeleton plus a detailed diagram of the spinal cord anatomy to understand where the lesions are in my body. Here is what I have in my report and what I should change my message board profile to read:
BONES:Right ScapulaRight 7th RibPelvisSymphysis PubisBilateral Hips (i.e. both hips)Bilateral Femora (i.e. both femurs)Thoracic Spine T4, T6, T12Lumbar Spine: L2, L3, L5Cervical Spine: C4
LIVER AND LYMPH:Liver - dome of right hepatic lobe; medial segment of left hepatic lobe; caudate lobeLymph - retroperitoneal, mediastinal and hilar lymph nodes
When I meditate and pray I am going to envision each of these areas being clear and NED. It's not pretty. There are so many little lesions in the bones. It really freaks me out.
I am scheduled to have an oophorectomy on January 27th. We are going to use information from the scans on the 8th to determine if I should proceed with the surgery. Dr. McAndrew feels that if I am not having success with the targeted therapies (that is the drugs that work to bind to the hormone receptors of the cancer cells) then perhaps the cancer has become resistant to these drugs and to the hormones so surgery would be unnecessary. On the one hand, yay that I get to keep my ovaries and perhaps leave my hormones alone, stop taking lupron and attempt to get my hormones in balance; on the other hand, boo that these targeted hormone therapy drugs aren't working on me since they can have the least side effects. Such a mixed bag. I have this feeling deep down that getting my hormones in check might actually help my body. Estrogen keeps bones strong. I have lesions in my bones. I need strong bones. BUT if estrogen is feeding the cancer that is in my bones then WTF choice do I have but to get rid of all estrogen in my body? Ugh. Time to head back to MD Anderson as well...I have so many questions. I've also heard about a study that showed that for women with late stage breast cancer treatment with Estradiol, yes oestrogen (synthetic estrogen) can shrink the cancer and then re-sensitize the cancer cells to hormonal therapy. I've found some people on the message boards that this has worked for as well. I'm compiling a list of questions and studies that I will present to both McAndrew and Moulder for their thoughts as well... I'm also getting in with Dr. Kenneth Conklin to review supplements that help combat the side effects of treatment; this will also be followed up with a visit to Dr. Keith Block at the Block Center for Integrative Cancer Treatment. I've wanted to go for about three years and NOW is the time.
2014 is going to be the year that I get this disease in check. Happy New Year!!
I have to say that it is nice to eat healthy, be sober and exercise regularly. Then when people ask you if you have any resolutions you don't have to stretch to anything too demanding or pie-in-the-sky. What I would wish for more than anything in 2014 is for great health. My goal is to become NED, which is an acronym for "no evidence of disease". Since my last post I have just stayed very busy with life, the usual things plus the addition of holidays, hanukkah and Thanksgiving that bled into Abby's birthday celebration at school then our trip to New York and then Leo's birthday celebrations at school and at home followed by Christmas and New Years...it has been very busy.
I have started to utilize the Stage IV message boards on the breastcancer.org website and they have been a god-send. It is so wonderful to connect with women who understand what it is like to live with this disease and all the various treatments. They offer advice, what has and hasn't worked for them, they check in on other members that are actively posting but then disappear for sometime (all of us having the same fear that perhaps they aren't posting anymore for the worst possible reason) and support each other. They share hopes and joys, tips and experiments and research, research, and research. I have been pouring over a ton of research that is a result of information I find on these boards. Thank you!!
Each member that posts on the boards has to have a profile. The profile lists your medical information and will look like something like this:
Dx 7/10/2012, IDC, 6cm+, Stage IIIa, Grade 3, 2/2 nodes, ER+/PR+, HER2+Dx 8/2013, IDC, Stage IV, mets, ER+Surgery Mastectomy (Right); Lymph Node Removal: Sentinel Lymph Node Dissection (Right)Chemotherapy 09/11/2012 Adriamycin, Cytoxan, TaxolTargeted Therapy 11/01/2012 HerceptinRadiation Therapy 02/28/2013 ExternalHormonal Therapy 05/28/2013 TamoxifenRadiation Therapy 09/09/2013 ExternalSurgery 10/17/2013 Prophylactic Ovary Removal (Both)Chemotherapy 11/01/2013 TaxotereTargeted Therapy 11/01/2013 Perjeta
OR
Mother of 2 - Daughter age 6, Son age 3; Liver mets
Dx 7/24/2012, IDC, Stage IV, Grade 3, 7/17 nodes, mets, ER+/PR-, HER2-Surgery 08/02/2012 Mastectomy (Left); Lymph Node Removal: Axillary Lymph Node Dissection (Left)Chemotherapy 09/11/2012 Adriamycin, Cytoxan, TaxolRadiation Therapy 01/21/2013 ExternalHormonal Therapy 03/01/2013 TamoxifenSurgery 03/20/2013 Prophylactic Ovary Removal (Both)OR
Dx 03/2013 @ 36 years old, Stage IV inflammatory breast cancer, triple negative, mets to brain, lung, liver, bone. Doing this for my amazing hubby and 2 kids (5 and 1 years old)
Chemotherapy 04/01/2013 Abraxane, carboplatinSurgery 08/09/2013 Mastectomy (Left); Lymph Node Removal: Axillary Lymph Node Dissection (Left)Chemotherapy 08/19/2013 TaxotereTargeted Therapy 08/19/2013 HerceptinTargeted Therapy 08/19/2013 PerjetaRadiation Therapy 08/20/2013 ExternalRadiation Therapy 10/22/2013 3-D conformal external beam radiationChemotherapy 11/25/2013 XelodaOR
Stage 4 in 2009, mets to liver, lungs, bones, and brain.
Dx 8/12/2002, IDC, 1cm, Stage IIb, 3/12 nodes, ER+/PR+, HER2-Dx 4/2/2007, IDC, 1cm, Stage II, ER+/PR+, HER2-Dx 9/1/2009, IDC, Stage IV, mets, ER+/PR+, HER2-Chemotherapy 10/01/2002 Adriamycin, CytoxanChemotherapy 01/01/2003 TaxolHormonal Therapy 05/01/2003 TamoxifenRadiation Therapy 05/01/2003 ExternalSurgery 05/01/2007 Mastectomy (Both)Chemotherapy 06/01/2007 Cytoxan, fluorouracil, methotrexateSurgery 05/01/2008 Reconstruction: Tissue expander placement, Latissimus Dorsi flap (Both)Targeted Therapy 09/01/2009 AvastinChemotherapy 09/01/2009 AbraxaneHormonal Therapy 06/01/2010 FemaraChemotherapy 09/01/2011 XelodaHormonal Therapy 01/01/2012 FaslodexChemotherapy 06/01/2012 NavelbineChemotherapy 05/01/2013 GemzarHormonal Therapy 06/01/2013 AromasinTargeted Therapy 08/01/2013 AfinitorChemotherapy 10/28/2013 HalavenThis is my profile:
Dx 9/18/2010, IDC, 6cm+, Stage IIIc, Grade 3, 15/19 nodes, ER+/PR-, HER2-Dx 9/28/2012, IDC, 1cm, Stage IV, ER+/PR-, HER2-Chemotherapy 09/01/2010 Cytoxan, Epirubicin, fluorouracilChemotherapy 01/07/2011 carboplatin, TaxolSurgery 03/11/2011 Reconstruction: Breast implant (permanent) (Left)Surgery 04/11/2011 Mastectomy (Left); Lymph Node Removal: Axillary Lymph Node Dissection (Left); Reconstruction: Tissue expander placement (Left)Radiation Therapy 06/07/2011 ExternalChemotherapy 06/07/2011 XelodaHormonal Therapy 09/03/2011 TamoxifenHormonal Therapy 10/25/2013 AromasinTargeted Therapy 10/25/2013 Afinitor
I have been living in the dark as far as the cancer details go. I haven't been reading my reports. I remember Dr. Mao telling me of studies where researchers told various cancer patients that they were either fine or not on a piece of paper (even though they were all in the same health position) and those that were told good news went on to be happier and do better that those who were given the (fake) bad news. I am so conflicted. I decided a few weeks ago to read my report after I got a call from my oncologist saying that my tumor markers are still on the up tick. Apparently they are still rising but the rate at which they are rising seems to be slowing some (but not enough in her opinion). I am scheduled for scans on January 8th.
I tried going up to the 7.5mg of Afinitor and I can't do it. The mouth sores come back after two or three days. I had such a great time finally meeting and spending quality time with another Stage IV survivor Stefanie, whom I had previously talked to when I was first diagnosed with mets and who seriously scared the bejesus out of me back then...but she is the most radiant, spiritual and beautiful person inside and out and I'm thrilled to have her in my corner. She was just diagnosed with her third recurrence and before she decided to try the Afinitor/Aromasin ("A/A") combo she connected with other Stage IV women who had provided a list of pros and cons. I am so happy that she sent me that list because I learned that some women were having good results on the A/A combo and on the 5mg dose. SO...I emailed Dr. McAndrew and my MD Anderson oncologist Dr. Moulder and asked what dose I should be on. Dr. Moulder came back with 5mg. Dr. McAndrew came back with 7.5mg because she thought that I wanted to up my dose from 5mg....ugh. I am NOT the medical professional here. I want to kill cancer but I also want quality of life. I'm certainly not qualified to make decision on my medications so why does why leave it up to me?!?!? Anyway, I've also noticed wheezing in my lungs while on the A/A combo and according to the list of A/A combo women some experience lung damage (a major side effect listed is lung and/or breathing problems) so why if I am already having wheezing would I want to up the dose? So yeah, I'm staying on the 5mg and if it isn't working (I'll know end of next week) then we are switching to some kind of chemotherapy instead of "targeted" therapy like A/A.
I have been having a lot of bone pain. I have been walking a ton as my regular exercise. I haven't done much ballet or anything else. With the kids being out of school it is much simpler to walk with them or bike with them to keep in shape and keep them entertained at the same time. When I saw Dr. McAndrew and told her about the bone pain she immediately ordered a bone scan. I had that right before Christmas. Merry Christmas! The scans showed that there wasn't much change from the Pet/CT I had 2 months ago and that the smaller lesions that showed on the scan didn't show on the Bone Scan. I think that is good news but I can't tell for sure; Dr. McAndrew called when I had just fallen asleep so I can't remember the whole conversation. Typical. However, something I learned through Stefanie's list and through my message boards is that the second A in the A/A combo, aromasin causes major joint and bone aches. That made me feel so much better. It's very disheartening when every little bone or muscle ache gets immediately attributed to the big C. Instead, it could be one of the many medications I took and am taking that could cause me to feel like a centenarian.
I sat down and printed out a diagram of a skeleton plus a detailed diagram of the spinal cord anatomy to understand where the lesions are in my body. Here is what I have in my report and what I should change my message board profile to read:
BONES:Right ScapulaRight 7th RibPelvisSymphysis PubisBilateral Hips (i.e. both hips)Bilateral Femora (i.e. both femurs)Thoracic Spine T4, T6, T12Lumbar Spine: L2, L3, L5Cervical Spine: C4
LIVER AND LYMPH:Liver - dome of right hepatic lobe; medial segment of left hepatic lobe; caudate lobeLymph - retroperitoneal, mediastinal and hilar lymph nodes
When I meditate and pray I am going to envision each of these areas being clear and NED. It's not pretty. There are so many little lesions in the bones. It really freaks me out.
I am scheduled to have an oophorectomy on January 27th. We are going to use information from the scans on the 8th to determine if I should proceed with the surgery. Dr. McAndrew feels that if I am not having success with the targeted therapies (that is the drugs that work to bind to the hormone receptors of the cancer cells) then perhaps the cancer has become resistant to these drugs and to the hormones so surgery would be unnecessary. On the one hand, yay that I get to keep my ovaries and perhaps leave my hormones alone, stop taking lupron and attempt to get my hormones in balance; on the other hand, boo that these targeted hormone therapy drugs aren't working on me since they can have the least side effects. Such a mixed bag. I have this feeling deep down that getting my hormones in check might actually help my body. Estrogen keeps bones strong. I have lesions in my bones. I need strong bones. BUT if estrogen is feeding the cancer that is in my bones then WTF choice do I have but to get rid of all estrogen in my body? Ugh. Time to head back to MD Anderson as well...I have so many questions. I've also heard about a study that showed that for women with late stage breast cancer treatment with Estradiol, yes oestrogen (synthetic estrogen) can shrink the cancer and then re-sensitize the cancer cells to hormonal therapy. I've found some people on the message boards that this has worked for as well. I'm compiling a list of questions and studies that I will present to both McAndrew and Moulder for their thoughts as well... I'm also getting in with Dr. Kenneth Conklin to review supplements that help combat the side effects of treatment; this will also be followed up with a visit to Dr. Keith Block at the Block Center for Integrative Cancer Treatment. I've wanted to go for about three years and NOW is the time.
2014 is going to be the year that I get this disease in check. Happy New Year!!
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