I haven't posted in over a year. That's because I ended up coming down with a nasty case of triple-negative ductal carcinoma (breast cancer). The year has been a whirlwind of chemo, surgery, testing, more surgery and even more surgery. Its been a time filled with fear, depression but mostly hope. I never knew how much I was loved by friends, family and fans until I got sick. The outpouring of caring, concern and assistance has made me humble and in awe of the generosity of the human spirit.
I would like to share my experience and hopefully guide others who find themselves facing the terrifying threat of breast cancer. There are steps to take to get though it with flying colors.
First and foremost: CHECK YOUR BOOBLES and HAVE OTHER PEOPLE CHECK YOUR BOOBLES. Don't put it off because you don't want to find out bad news. Check now and often so you can kick it's ass in an early stage. I felt nothing and had clean exams until one day it appeared, seemingly overnight. I felt a lump, had my husband check it, then IMMEDIATELY went to my doctor. She confirmed I had a lump on my right side, and an additional lump in my right armpit (lymph-node). Having a lump in the lymph-node means it has begun to spread and you need to get it taken care of right away. You may also smell a pickle-like odor you have never had before, and possibly a long, black hair growing out of the affected breast. Plus you are always tired.
I never went through all the "why me" crap. I found out I was BRCA1 positive (a cancer gene) years earlier and when I finally got it I thought "What took you so long?" Doctors recommend if you are BRCA1 positive that you remove breasts and ovaries right away. Unfortunately I was not covered by insurance and the operations were not even remotely affordable for me. So I rolled the dice and lost. Sort of. I actually think I won.
SO, the next step after you, your significant other / family member and your doctor agree that you have a lump that wasn't there before...Get thee to a hospital for a biopsy! Have your doctor recommend a good place for a biopsy and if you're insured make sure it's in network. Very important.
Next, go to your biopsy expecting the worst so you are not surprised. This helped me have ZERO shock when the results came in as positive. Stage 2b triple-negative ductal carcinoma that had spread to the lymph nodes. A VERY aggressive cancer that was already spreading... I was very Spock-like. This composure helped me make a solid plan and implement it right away.
I am a person who believes in herbal medicine PLUS proven scientific methods, so I didn't hesitate to mix them together, being treated by leaders in the scientific field and also using supplements before and after chemo. Unfortunately my 30 years of taking herbal supplements and eating organic foods had not prevented the cancer, so I knew I had to bring science into the picture.
Next, with your report in hand, ask around, google, etc. the BEST cancer center in your area. I asked a friend who had been through cancer treatment and she recommended Memorial Sloan Kettering in NYC. She referred to it as a "spa", which I was all for. I checked with my insurance carrier and they were in network! I called their intake division and set up appointments. (They asked me to fax my biopsy report so have that handy and ready to send.)
I then was assigned a team of oncologist, surgeon, radiologist and others. I recommend you ask for the hospital's social worker ASAP to help with bills, grants and to see what programs the hospital offers. I had to really dig for this info and got it too late. Also, line up the hospital's psychiatrist to talk to while you go through the treatments. Some hospitals can also offer you acupuncture, yoga and support groups. At this point if you can't collect unemployment, apply for disability ASAP, they need you to prove you will be out of commission for 12 months. I didn't know I could do this and applied way too late, and was denied. You might think you can work during this, but if your job is physical like mine was, it ain't happenin'. Cancercare.org has free help with this and other programs, and free legal help.
Next, research your state's medical marijuana program and find a doctor who can certify you ASAP. It is not covered by insurance so you will need to set up a gofundme campaign to cover it- plus the myriad leftover bills and meds that insurance doesn't cover. Then look on your city/state web site to locate dispensaries. You will need to be certified and obtain your medical marijuana card before the dispensaries will let you in the door.
If your treatment begins with chemo like mine did, PLEASE research actual medical journals online (peer reviewed studies - not "natural news" type sites) to find a chemo that suits you best. My doctor was ready to shove a regimen into me that causes heart failure in some patients. It caused heart failure in my mom years earlier so I refused it. I found my ideal chemo. Round one was a combo of Paclitaxel (made from bark of a Chinese tree) and Carboplatin. I felt like a super-hero-mutant being filled with all that platinum!
Round 2 I let my doctor pick the chemo but insisted on non-cardio-toxic drugs. Apparently the combo I demanded shrunk the tumors down to nothing. Round 2 was to make sure nothing was left in the body. The chemo effects your nails so ask for the ice-pack treatments. And ask to have everything co-administered with an IV of saline to soften the immediate impact on the organs. I also believe that the steady use of medical marijuana and CBD oils helped shrink the tumors to nothing. It helped with pain and nausea, and the feeling of terror. I felt like I breezed through because of this miracle plant. I also made sure to go to the gym or at least go for long walks during chemo and it made me soooo much healthier. Drink 2 to 3 liters of water daily!
If you can, bring friends and family to sessions so you can lighten the mood. My husband and dear friend (and amazing family members) went with me to treatments and appointments and we made a fun day of it, laughing and fooling around in a room full of downtrodden souls. I sincerely hope we were able to bring smiles to their faces, even for a brief moment. I know we cheered up all of our doctors and nurses and made a few of them giggle out loud. Their days are extremely hard, so they deserve to smile.
After about 4 months of weekly chemo, it was time to discuss surgery to remove the vulnerable body parts. As a BRCA1 "mutant" I was a candidate for certain recurrence. I decided to take it all off to prevent future cancer. I can't recommend it enough.
First you will need a double-mastectomy. It SUCKS but I never want this crap to happen again. Find the best surgeon in your network/hospital. Demand to look at their before and after picture books. I raised some eyebrows doing this, but then ended with the heads of surgery at MSK so I don't regret being a squeaky wheel at all. Take control! It's your body!
The doctor explained the available options. First, I would be getting the double mastectomy and then spacers would be implanted to grow the boob skin for future reconstruction. I had the double mast about 2 months after stopping chemo so my body could rest. I was in hospital for 1 night then sent home with 4 drains (gross) that I had to empty daily, a weird bra thing and lots of pain meds.
The spacers are plastic bags filled with fluid they insert under your pectoral muscles, which hurts like shit. They have uncomfortable metal "ports" in them so they can be filled monthly. So basically you go in, lie down, hold your breath, and they get a big magnet to pull the metal port to the front of your boob area. It feels so GROSS to have this thing moving around inside your chest. Then they take a long needle and stick it through your (numb) boob=skin and inject the spacer bag with saline solution to help stretch and grow your skin. So, Gross. But a scientific marvel!
Four months of annoying spacers later, they planned the first step of reconstruction. My choices were: implants or DIEP flap or other flaps using my own flesh. I opted for the DIEP flap because its your own fat which will NEVER leak or go "bad" (once it lives successfully for 7 days after the surgery.) The DIEP also gives you an amazing tummy tuck, so say goodbye to your flabby belly! It is MAJOR invasive surgery, so prepare yourself! You will be miserable and out of commission for 8-12 weeks! The implant surgery is faster and does not involve chopping other body parts off, but I didn't want to deal with future leaks, ripples, pectoral muscle pain or infections. What if there is a zombie apocalypse? Who would exchange my leaky boob bags?
The DIEP surgery sucked ass so bad, I can't even believe the amount of pain and suffering. But once I heal, these babies are my own flesh and look and feel real. Tip: before deciding on the DIEP, ask to see your doctor's DIEP success rate. The skin and fat can die. Find a doctor with a very high DIEP survival/success rate.
I was able to stay in hospital longer this time, and also I had my ovaries removed while I was on the table. The surgery lasted 12 hours! I was attended by numerous surgeons all working together with the head of surgery. They used the best techniques in micro-surgery to reattach veins, arteries and all the other tiny bits and pieces. It is a miraculous technique that MSK helped invent. I woke up seemingly 5 minutes later to the shining faces of my husband and aunt. Whew! It was over! Sort of.
The pain was unbearable so they flooded my IV with opiates, which actually sent my vital signs dipping so low they kept me in hospital for 6 days instead of 3. But I was given a rock-star posh suite on the "rich-folks" plastic surgery floor due to overflow downstairs. I must have had 30+ staff attending to me for 6 days and nights. They used a doppler machine to make sure the blood was flowing in the main arteries and veins so that the new boob flesh wouldn't die. Luckily nurses emptied my drains and I stayed so long that they removed all 4 so I didn't have to do it at home. Whew!
The main obstacle now was PAIN. I think we all feel pain differently, I know for a fact that I do not handle pain well at all. I needed opiates, muscle relaxants, cannabis, anti-anxiety meds and gabapentin to heal the nerve endings. I had a wonderful friend visit a healer in Brazil who prescribed an herbal medicine regimen as well, and I went back on all my supplements and Ayurveda tonics. (Doctors had earlier instructed me to stop all herbal meds and vitamins as they would interfere with chemo). As I write this I am trying to wean off of the opiates because I hate the way they make me feel, and I recently had a nephew die from a heroin overdose, he had started off with opiates prescribed by a doctor. It's disgusting.
The first weeks I was told to walk bent over like an old lady to let the belly heal. They had cut out and created a new belly button because they had to pull the skin down to attach back to the belly area where the fat had been taken from. I am slowly able to walk upright now, weaning slowly off pain meds, resting a ton, not able to lift anything or pull/push doors, so I'm mostly house-bound. Also they forget to tell you that your new belly-button-hole will start to leak 10 days after surgery and stay leaking for weeks. Ask for tons of gauze.
In 4 months they will do the next surgery to create new nipples, then I will get areola tattoos, and then I plan to cover all of my scars with tattoos. I was expecting worse scars, but the truth is, once these heal up, they will be minimal. Thanks to the expertise of the great plastic surgeons at MSK, I will look normal again!
So this is where it stands for now, my latest cancer screenings are 100% clear, I have removed vulnerable body parts to prevent recurrence, I have had a lot of time to relax and reflect, and I have received the most humbling outpouring of love and support from everyone. I will be monitored for 10 years because I agreed to join a study at MSK to see whether people in my situation need radiation or not. The study randomized me to the "no radiation wing", so now we wait and watch, and cross our fingers. I will continue a healthy lifestyle of organic foods, exercise, plenty of rest and water and a keeping sense of humor.
I am eager to help anyone who has questions about triple-negative ductal carcinoma, treatments and what to expect. I'm sure there's plenty I have forgotten, thanks to the drugs. Please feel free to message me.
I'm a total wimp. If I can do it, you can do it!
Super-special thanks to family and friends who sent cards, flowers, chocolates, steaks, cupcakes, supplements, knitted me hats and socks, stayed with me during treatments, visited while I was (and am) recovering, people who texted, prayed, researched, chanted, emailed, left kind posts and messages. And all of you who generously donated to my GoFundMe, you kept us out of debtors prison and made it possible to pay off the bills and get extra health benefits from many programs! Biggest thanks to my amazing husband, Levi, for taking care of me, taking me to appointments, treatments, being by my side at surgeries and recovery at home, cooking, cleaning, busting his ass working every day to pay the bills and keep a roof over our heads. He does all of this with kindness and love, a smile and a wink, and true grit.
THANK YOU. xoxoxoxoxoxox
I would like to share my experience and hopefully guide others who find themselves facing the terrifying threat of breast cancer. There are steps to take to get though it with flying colors.
First and foremost: CHECK YOUR BOOBLES and HAVE OTHER PEOPLE CHECK YOUR BOOBLES. Don't put it off because you don't want to find out bad news. Check now and often so you can kick it's ass in an early stage. I felt nothing and had clean exams until one day it appeared, seemingly overnight. I felt a lump, had my husband check it, then IMMEDIATELY went to my doctor. She confirmed I had a lump on my right side, and an additional lump in my right armpit (lymph-node). Having a lump in the lymph-node means it has begun to spread and you need to get it taken care of right away. You may also smell a pickle-like odor you have never had before, and possibly a long, black hair growing out of the affected breast. Plus you are always tired.
I never went through all the "why me" crap. I found out I was BRCA1 positive (a cancer gene) years earlier and when I finally got it I thought "What took you so long?" Doctors recommend if you are BRCA1 positive that you remove breasts and ovaries right away. Unfortunately I was not covered by insurance and the operations were not even remotely affordable for me. So I rolled the dice and lost. Sort of. I actually think I won.
SO, the next step after you, your significant other / family member and your doctor agree that you have a lump that wasn't there before...Get thee to a hospital for a biopsy! Have your doctor recommend a good place for a biopsy and if you're insured make sure it's in network. Very important.
Next, go to your biopsy expecting the worst so you are not surprised. This helped me have ZERO shock when the results came in as positive. Stage 2b triple-negative ductal carcinoma that had spread to the lymph nodes. A VERY aggressive cancer that was already spreading... I was very Spock-like. This composure helped me make a solid plan and implement it right away.
I am a person who believes in herbal medicine PLUS proven scientific methods, so I didn't hesitate to mix them together, being treated by leaders in the scientific field and also using supplements before and after chemo. Unfortunately my 30 years of taking herbal supplements and eating organic foods had not prevented the cancer, so I knew I had to bring science into the picture.
Next, with your report in hand, ask around, google, etc. the BEST cancer center in your area. I asked a friend who had been through cancer treatment and she recommended Memorial Sloan Kettering in NYC. She referred to it as a "spa", which I was all for. I checked with my insurance carrier and they were in network! I called their intake division and set up appointments. (They asked me to fax my biopsy report so have that handy and ready to send.)
I then was assigned a team of oncologist, surgeon, radiologist and others. I recommend you ask for the hospital's social worker ASAP to help with bills, grants and to see what programs the hospital offers. I had to really dig for this info and got it too late. Also, line up the hospital's psychiatrist to talk to while you go through the treatments. Some hospitals can also offer you acupuncture, yoga and support groups. At this point if you can't collect unemployment, apply for disability ASAP, they need you to prove you will be out of commission for 12 months. I didn't know I could do this and applied way too late, and was denied. You might think you can work during this, but if your job is physical like mine was, it ain't happenin'. Cancercare.org has free help with this and other programs, and free legal help.
Next, research your state's medical marijuana program and find a doctor who can certify you ASAP. It is not covered by insurance so you will need to set up a gofundme campaign to cover it- plus the myriad leftover bills and meds that insurance doesn't cover. Then look on your city/state web site to locate dispensaries. You will need to be certified and obtain your medical marijuana card before the dispensaries will let you in the door.
If your treatment begins with chemo like mine did, PLEASE research actual medical journals online (peer reviewed studies - not "natural news" type sites) to find a chemo that suits you best. My doctor was ready to shove a regimen into me that causes heart failure in some patients. It caused heart failure in my mom years earlier so I refused it. I found my ideal chemo. Round one was a combo of Paclitaxel (made from bark of a Chinese tree) and Carboplatin. I felt like a super-hero-mutant being filled with all that platinum!
Round 2 I let my doctor pick the chemo but insisted on non-cardio-toxic drugs. Apparently the combo I demanded shrunk the tumors down to nothing. Round 2 was to make sure nothing was left in the body. The chemo effects your nails so ask for the ice-pack treatments. And ask to have everything co-administered with an IV of saline to soften the immediate impact on the organs. I also believe that the steady use of medical marijuana and CBD oils helped shrink the tumors to nothing. It helped with pain and nausea, and the feeling of terror. I felt like I breezed through because of this miracle plant. I also made sure to go to the gym or at least go for long walks during chemo and it made me soooo much healthier. Drink 2 to 3 liters of water daily!
If you can, bring friends and family to sessions so you can lighten the mood. My husband and dear friend (and amazing family members) went with me to treatments and appointments and we made a fun day of it, laughing and fooling around in a room full of downtrodden souls. I sincerely hope we were able to bring smiles to their faces, even for a brief moment. I know we cheered up all of our doctors and nurses and made a few of them giggle out loud. Their days are extremely hard, so they deserve to smile.
After about 4 months of weekly chemo, it was time to discuss surgery to remove the vulnerable body parts. As a BRCA1 "mutant" I was a candidate for certain recurrence. I decided to take it all off to prevent future cancer. I can't recommend it enough.
First you will need a double-mastectomy. It SUCKS but I never want this crap to happen again. Find the best surgeon in your network/hospital. Demand to look at their before and after picture books. I raised some eyebrows doing this, but then ended with the heads of surgery at MSK so I don't regret being a squeaky wheel at all. Take control! It's your body!
The doctor explained the available options. First, I would be getting the double mastectomy and then spacers would be implanted to grow the boob skin for future reconstruction. I had the double mast about 2 months after stopping chemo so my body could rest. I was in hospital for 1 night then sent home with 4 drains (gross) that I had to empty daily, a weird bra thing and lots of pain meds.
The spacers are plastic bags filled with fluid they insert under your pectoral muscles, which hurts like shit. They have uncomfortable metal "ports" in them so they can be filled monthly. So basically you go in, lie down, hold your breath, and they get a big magnet to pull the metal port to the front of your boob area. It feels so GROSS to have this thing moving around inside your chest. Then they take a long needle and stick it through your (numb) boob=skin and inject the spacer bag with saline solution to help stretch and grow your skin. So, Gross. But a scientific marvel!
Four months of annoying spacers later, they planned the first step of reconstruction. My choices were: implants or DIEP flap or other flaps using my own flesh. I opted for the DIEP flap because its your own fat which will NEVER leak or go "bad" (once it lives successfully for 7 days after the surgery.) The DIEP also gives you an amazing tummy tuck, so say goodbye to your flabby belly! It is MAJOR invasive surgery, so prepare yourself! You will be miserable and out of commission for 8-12 weeks! The implant surgery is faster and does not involve chopping other body parts off, but I didn't want to deal with future leaks, ripples, pectoral muscle pain or infections. What if there is a zombie apocalypse? Who would exchange my leaky boob bags?
The DIEP surgery sucked ass so bad, I can't even believe the amount of pain and suffering. But once I heal, these babies are my own flesh and look and feel real. Tip: before deciding on the DIEP, ask to see your doctor's DIEP success rate. The skin and fat can die. Find a doctor with a very high DIEP survival/success rate.
I was able to stay in hospital longer this time, and also I had my ovaries removed while I was on the table. The surgery lasted 12 hours! I was attended by numerous surgeons all working together with the head of surgery. They used the best techniques in micro-surgery to reattach veins, arteries and all the other tiny bits and pieces. It is a miraculous technique that MSK helped invent. I woke up seemingly 5 minutes later to the shining faces of my husband and aunt. Whew! It was over! Sort of.
The pain was unbearable so they flooded my IV with opiates, which actually sent my vital signs dipping so low they kept me in hospital for 6 days instead of 3. But I was given a rock-star posh suite on the "rich-folks" plastic surgery floor due to overflow downstairs. I must have had 30+ staff attending to me for 6 days and nights. They used a doppler machine to make sure the blood was flowing in the main arteries and veins so that the new boob flesh wouldn't die. Luckily nurses emptied my drains and I stayed so long that they removed all 4 so I didn't have to do it at home. Whew!
The main obstacle now was PAIN. I think we all feel pain differently, I know for a fact that I do not handle pain well at all. I needed opiates, muscle relaxants, cannabis, anti-anxiety meds and gabapentin to heal the nerve endings. I had a wonderful friend visit a healer in Brazil who prescribed an herbal medicine regimen as well, and I went back on all my supplements and Ayurveda tonics. (Doctors had earlier instructed me to stop all herbal meds and vitamins as they would interfere with chemo). As I write this I am trying to wean off of the opiates because I hate the way they make me feel, and I recently had a nephew die from a heroin overdose, he had started off with opiates prescribed by a doctor. It's disgusting.
The first weeks I was told to walk bent over like an old lady to let the belly heal. They had cut out and created a new belly button because they had to pull the skin down to attach back to the belly area where the fat had been taken from. I am slowly able to walk upright now, weaning slowly off pain meds, resting a ton, not able to lift anything or pull/push doors, so I'm mostly house-bound. Also they forget to tell you that your new belly-button-hole will start to leak 10 days after surgery and stay leaking for weeks. Ask for tons of gauze.
In 4 months they will do the next surgery to create new nipples, then I will get areola tattoos, and then I plan to cover all of my scars with tattoos. I was expecting worse scars, but the truth is, once these heal up, they will be minimal. Thanks to the expertise of the great plastic surgeons at MSK, I will look normal again!
So this is where it stands for now, my latest cancer screenings are 100% clear, I have removed vulnerable body parts to prevent recurrence, I have had a lot of time to relax and reflect, and I have received the most humbling outpouring of love and support from everyone. I will be monitored for 10 years because I agreed to join a study at MSK to see whether people in my situation need radiation or not. The study randomized me to the "no radiation wing", so now we wait and watch, and cross our fingers. I will continue a healthy lifestyle of organic foods, exercise, plenty of rest and water and a keeping sense of humor.
I am eager to help anyone who has questions about triple-negative ductal carcinoma, treatments and what to expect. I'm sure there's plenty I have forgotten, thanks to the drugs. Please feel free to message me.
I'm a total wimp. If I can do it, you can do it!
Super-special thanks to family and friends who sent cards, flowers, chocolates, steaks, cupcakes, supplements, knitted me hats and socks, stayed with me during treatments, visited while I was (and am) recovering, people who texted, prayed, researched, chanted, emailed, left kind posts and messages. And all of you who generously donated to my GoFundMe, you kept us out of debtors prison and made it possible to pay off the bills and get extra health benefits from many programs! Biggest thanks to my amazing husband, Levi, for taking care of me, taking me to appointments, treatments, being by my side at surgeries and recovery at home, cooking, cleaning, busting his ass working every day to pay the bills and keep a roof over our heads. He does all of this with kindness and love, a smile and a wink, and true grit.
THANK YOU. xoxoxoxoxoxox
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