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.
Friday, February 21, 2014
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!!!
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