The Second Opinion

November 30, 2011 - Went to Dr. F's office today - no waiting, I walked in gave my name and DOB, the receptionist made a copy of my health insurance card, gave me a form to fill out and put me in an exam room. In about 3 minutes, Nurse Nancy came in - she did the preliminary intake interview, any past surgeries, hospitalizations, weight was down to 197 (passed the 200 marker- yay). She was very nice it was an easy chat, she told me to continue filling out the form and the Dr. would be in in a few minutes. About 4 minutes later Dr. F came in. Sat chatted about my responses to Nancy, when was the thrombosis, did they know the cause? What was the treatment, etc. We chatted about Fallon and Simon. He looked at my breasts and asked me to get dressed and come into his office at the end of the hall when I was ready. We called Simon on Dr. F's office phone - Simon is in Illinois at his company headquarters and they had very nicely reserved a conference room for him so he could phone meet Dr. F with me for the Second Opinion. He confirmed what Dr. B had said re: Invasive Ductal Carcinoma - he added a Stage to it - Stage II. He had the extra information from the FISH test on the HER2 - that I was positive for HER2 which meant that the therapy regimen would also include a drug called Herceptin, which would continue past the chemo and radiation for a full years worth. HER2 is an enzyme associated with a protein that is usually indicative of a more aggressive form of breast cancer. Supposedly Herceptin is easier on the body, not as toxic and doesn't cause hair loss - so once the chemo is done and the herceptin regimen continues on its own - hair can grow back, there is little if any nausea and fatigue should lessen. He also brought up the possibility that I could do Neo adjuvency therapy, which is where I take the chemo upfront and then do surgery after. The benefit being that they can actually measure the efficacy of the chemo since they can monitor if the tumor stays the same, shrinks or (hopefully not) continues growing. Dr. F told me should we decide to use him and the facilities there he had a number of oncologists we can pick from - gave me a list with their names and phone number (they are basically across the hall). I told him that I planned to do a liver cleanse and would be using herbs and other healing modalities during the process. He got very excited and said - well in that case you'll want to read this article in REIKI magazine - he hands me an article about him where he uses a reiki master on his patients pre - during and post operation. He also gave me the book "After Shock" by Puja Thompson - she writes about the journey of breast cancer and navigating the system while being true to your own beliefs and the healing modalities you wish to pursue. He thought the liver cleanse was a great idea and then took me down the hall to meet a patient navigator - Nancy. Nancy wasn't around but in the library I met Jenny and Angela. Angela put together a package with pamphlets, a book - "Be a Survivor" by Vladimir Lange, M.D., pink eye shades (I guess for use during chemo infusion), a journal and a pen. Both were extremely sweet - both had Breast Cancer, had been HER2 positive but they had both been Stage IV. They chatted with me for about 1/2 hour answering any questions, basically ready to make me feel safe and secure, which they accomplished. Upon leaving I felt really taken care of and listened to. I need to see what Simon's impression is but I feel good about Dr. F.

Film Delivery

November 28th After calling the original hospital where I had the primary tests I arranged to pick up the film for the mammogram and sonogram so I could drop them off at Dr. F's office. No wait at the hospital, went to the x-ray file room, the clerk asked my name and DOB (all identification is done through DOB) and then went into these cool rolling stacks and came out with a huge envelope. The mammogram was the big film and the sonogram snaps were smaller. Took them and the pathology report from Dr. B into Manhattan. The receptionist at Dr. F's office was very nice, made copies of the pathology report and had me sign a paper, I signed it, she handed me a copy and then I read it (maybe I should have read it first). It was a form allowing Dr. F's radiologists to interpret my film, stating that I would pay for it even if my insurance didn't. I asked the receptionist for the form back, that I hadn't read it and I didn't want to approve that until I had spoken with the Dr and we had determined if it was necessary. She wrote on the form that I needed to give a verbal consent before approval, but she wouldn't give it back. I should also have picked up the slide from the biopsy but no one had been specific with me about getting those. oops!

Research, Eat, Pray

So the glove is on the ground and the challenge needs to be met! It's all real and I can either break down and give up or take my life into my own hands and pursue the outcome on my terms. Action Items: Find a surgeon for a second opinion, investigate alternative therapies for cancer, stay tuned in spiritually. Not always in that order. Simon talked me into asking my girlfriends who have already had breast cancer about their experiences and whether or not they would recommend their surgeons. I know this seems like a no-brainer, but making that first contact and reaching out to a friend and saying "I was recently diagnosed with breast cancer" was a monumental mountain. Once I told one person though, everything was easier. I also called friends who are in the health industry for recommendations, spoke with my healthcare provider who placed a Nurse Case Manager with me, and tried to get another name from my PCP. One surgeon went to medical school in Mexico with no residency time in the US. It somehow made me uneasy. A bunch of Dr's just simply weren't in my healthcare plan - especially ones at NYU. One looked great on paper but never called back. I narrowed it down to Dr. F. I have an appointment on November 30th and need to take my film from the Mammogram and Sonogram to his office on the 28th. Things I am looking for in a surgeon, someone who talks to me and doesn't just focus on my husband (or can include us both in the conversation), someone I feel comfortable with and can talk to honestly and freely. Someone who doesn't feel overly medical and stuffy. Someone who can speak in laymans terms or break down terms easily for me without a hint of superiority. Someone who accepts alternative therapies as a possible modality within my treatment. I found a paper Dr. F wrote on using Vitamin D therapies and nutrition in healing cancer. The first recommended surgeon I found with any hint of alternative beliefs, so we'll see. My therapist/hands on healer Diana recommended I do a liver/gallbladder and Bowel/colon cleanse prior to any medications etc. Also to help my body release toxins more freely. She suggested Dr. Schulze's website herbdoc.com. Should you choose to use any of his herbs go to his site, I am not going to encroach on any of his copyrighted materials, just give you an idea of the cleanse and how it helped me in another blog. I also decided that the no wheat/dairy/coffee diet needed some help - I was down to wine and beer only, but cut them out of my diet completely. I found a great book called "Conquering Cancer: Pursuing a Cure via Integral Medicine by Adam J. Reissner. It's a little simplistic and goofy, he has this cast of characters who ask questions and have a family type of banter at the end of each chapter as a summation, but the information is great and really well researched and documented. I started to take the idea of alkanization more seriously because of this book. The basic principle is that cancerous cells feed off acids, so you want to keep your body as alkaline as possible so they have no food and cannot grow. Just because a food is acidic, doesn't mean it is acidic in your body - like citrus fruits. We think of citrus fruits as acid foods, yet once they are in the body they are alkaline. After reading this book I also made sure to eliminate all sugars (I don't eat an awful lot anyway, but even honey is out - leaving only stevia) and nightshades (tomatoes, peppers, eggplants, etc). AND of course, I spent all summer canning and I can't have anything pickled - yeesh. So now it's non caged chicken, wild fish, nuts (not peanuts or cashews) and seeds, rice products, I buy quinoa pasta, tons of organic veggies and fruits (I'm not a red meat eater, but if you are you can have grass fed beef). I'm not a big - sit and meditate every single day kind of gal, but I daily connect to the divine and check in. Confirming my love and devotion, opening my heart and breathing into my soul. This daily routine has opened into also asking for divine healing and feedback on my path. My therapist, Diana Muenz Chen, is a healer and I have been getting hands on energy healings from her, as wells as, therapy sessions. My chiropractor, Dr. Ann Maugeri, is an applied kinesthiologist and treats ailments with herbs, nutrition and homeopathy, so she is also doing some research. My friend, Rick gave me the name of an acupuncturist I am interested in trying when we have some extra money. Unfortunately, I no longer have access to a nearby massage therapist, but I am looking for someone new and in the area I can feel comfortable with.

DIAGNOSIS!!

November 15th Simon and I went back and forth about this meeting - he wanted to be there with me but wouldn't be in town on a Tuesday or Thursday (only days Dr. B is available) until Thanksgiving week - November 22nd. I called Dr. B to see if this was too late and his nurse (wife?) said no, they had the results and that would be okay. I thought, wow, no urgency, maybe it isn't anything big. Maybe just a fat lobule or something. As I waited, that single stitch kept bugging me and itching and I started to worry (remember my waiting problem?). I finally had to tell Simon that I couldn't wait and needed to go in sooner than Thanksgiving week. Besides I had told my Mom and Dad and they were calling me wondering why I wasn't DOING something. All in a loving caring way, but stressful none the less. I made an appointment for the 15th. Simon was out of town but I was supposed to call him on his cell phone and speakerphone him in. No change in weight and BP - I thought I should have dropped something being on this no wheat/dairy/coffee thing, but oh well!! I went into Dr. B's office and we got Simon on my cell phone with the speaker on. Dr. B told me I have Invasive Ductal Carcinoma. He explained that that means there does need to be surgery and a chemo regimen followed by radiation. He was very adamant that alternative therapies have no place in cancer treatment and that an oncologist would put me on a chemo regimen. He also stated that this was the primary opinion and that I should go to other surgeons and get other opinions before making a decision, that I had time, the mass was relatively small. He said in his preliminary opinion that I am a prime candidate for a lumpectomy but it would be up to me. Some people feel very strongly about mastectomy's and lumpectomy's so I should get on the internet, do some research, get another opinion, or two or three, whatever I needed to do to be comfortable with my choices (I really thank him for this advice - don't feel overly rushed if you aren't comfortable with what is happening.) My Estrogen and Progesterone Receptors were negative but my Her2 was 2+ - which is a borderline reading - the pathologist was conducting another test called FISH and would send that report later. Dr B. seemed surprised that I had not asked a single question about hair loss - I have a lot of very thick and long hair. I told him I had greater concerns over other issues and that my hair would grow back. I had to ask Dr. B for copies of the reports - he readily made them available, but it seemed that had I not asked, he would not have given them to me.

First Meeting with A Breast Surgeon

November 11 I went in to the Breast Surgeon referred by my PCP. They had already requested the mammogram and sonogram imaging to review and received the reports from the radiologist at the hospital. Weight was 207 (down 8 pounds due to my no wheat/dairy/coffee regimen) - Blood pressure was 123/93 - again high to me, but better than at the hospital. I met with Dr. B in the exam room. He palpated my breasts (a fancy way of saying he did a tactile breast exam with is hands). He asked me if my hair used to be red (yes!) and he went on about how redheads have a greater amount of *hister* something, I don't recall what exactly, that makes redheads skin react to emotions and thoughts. We redden easily. Something I've always hated and unfairly blamed on my poor parents. He said that the nodes felt fine and he couldn't feel anything other than the mass I originally felt, but there needed to be further tests. He asked me to lay down on my side and rolled over a sonogram machine (I was feeling more familiar with these machines now). I asked him if he was taking another sonogram and he said not really he was going to perform the biopsy. Biopsy? I squeaked. He immediately stopped and said "Do you want to wait and do it another time?" I had to think a few minutes - what were my options? Did I want a biopsy? I guess yes, I wanted one so we could see what were dealing with. Did I want it now?? Well, why wait, I'm here and besides I'd have to pay another $40 copay to come back - the $40 copay made my decision easy - "okay, let's do it now". His nurse (I think she's also his wife, but I haven't fully determined that) got out some needles and bottles and the goopy gunk for the sonogram and rolled out a different machine for the biopsy. Dr. B located the mass on the sonogram (again with the same difficulty afforded the tech at the hospital) then he gave me a double dose of a local anesthetic and told me he had to go deep because the mass was close to my chest wall. He told me the biopsy was a needle that he would guide down into the mass and then a little clipper thing would come out of the needle and cut a little clump off the mass (I'm sure he was much more clinical and eloquent in his description, but you get the idea). He then demonstrated the sound the biopsy machine would make when it took the piece - it was like a thunk. I'm glad he let me listen to it a couple of times first because it was kind of a scary weird definitive sound - maybe it sounded closer to a guillotine? That said he bellied up against my back, pushed in the needle and then pushed really hard - He had to work it to get the needle in deep enough to take the biopsy. I felt nothing, until he pulled the needle out and that made my stomach feel a bit like I was falling. He did one more, this one a little easier since he already made the path. Dr. B stitched a tiny little single stitch where the hole from the needle was - told me to call next Monday and if the results were in he'd see me on Tuesday. So I had a hole in my breast - I figured this was the first of the indignities that would be performed on my poor breast. But one step closer to figuring out what my future will be.

Breast Imaging Results

October 18th I got a letter from the Hospital stating that there was an abnormality in my breast and I needed follow-up. Really? Are you referring to the lump I could feel hence my decision to come in for the tests?? You can't give me any more information than that?? Luckily, before I could get a real rant going my PCP called and told me the Mammogram was negative, but they were able to see the mass in the sonogram. I know, I was there looking at it too remember? She wanted me to see a breast surgeon. I told her she had already given me referral to Dr. B and I had booked the earliest date - which will be November 1st. She was very impressed with her foresight, as was I. Another waiting game!!

Breast Imaging and Fun at the Hospital

October 11, 2011 After seeing my primary care physician she gave me a prescription (script) for a mammogram and a referral to a Breast Surgeon. I called the Hospital to set up the tests the same day as the appointment with my PCP - and got a date 1 month away. October 11th. Ugh! I don't do well waiting. I'm a great procrastinator, but that's my decision and time, I don't like it when others waste my time. Plus, I can be very good at imagining the worst. October 11th comes along. I head to the Hospital - go down to the basement for intake, wait about 30 minutes before seeing a mildly beleaguered, yet friendly intake person. It's my first time at this Hospital so she takes my license info, DOB, Healthcare stuff etc. Takes a while but she is extremely friendly and nice. Sends me upstairs to Imaging. The receptionist is adorable and I fill out another couple of forms (the medical world loves forms). I only wait for about 15 minutes when a tech comes to get me for the mammogram. She asks me why I came in - I told her it was a yearly exam but that I also felt a lump and we needed to see what it was. SHE GOES BALLISTIC!! Tech: You have a lump? Me: Yes Tech: Where's your sonogram script? Me: My what??? Tech: Whenever you feel a lump you HAVE to come in WITH a sonogram script, it's protocol. Me: Well, my Dr. felt the lump and she didn't say anything about a sonogram. Tech: You can't leave here without a sonogram. - Just strip down to your jeans and put this gown on, opening to the front. (I'm feeling embarrassed and put off by my ignorance of "protocol" and her aggression towards me) (At this point she had taken my weight so my shoes were off) Me: Should I put on my shoes? Tech: Yes (dripping with sarcasm) this IS a hospital, you don't want to catch something. I'm thinking eewwww! right? I haven't personally (for me) been in a hospital since 1996 when I gave birth to my beautiful daughter Fallon and I grew up thinking of hospitals as sterile environments. But I guess she's right, you're more likely to get an infection in the hospital when you are sick than you are likely to get one at home. So, we move over to the mammogram machine, never a graceful time getting a mammography. Leaning into the machine, hands in weird positions, feet pointing one way while your tits are going a different way and being squished, prodded and kneaded by (in my case) an angry, unfeeling tech! She tells me to wait in an adjacent waiting room and she'll see what I should do next, the waiting room is actually a hospital room broken into thirds by curtains with chairs in each section. I choose the furthest section, which looks out over the top of a parking lot and then the East River, Manhattan and the Statue of Liberty - much more calming than the Mammo Tech from Hell! After about 40 minutes and numerous trips to reception to ask what is going on (again, I don't like waiting - unless I know why and I feel the request reasonable). A very nice and apologetic Dr. comes to find me to inform me that they have spoken to my PCP and she is faxing a script for the sonogram and I should be seen within the next 1/2 hour. Luckily I had my trusty kindle with a ton of plays I needed to read for the conference, so I settled back down to my beautiful view and some play reading. Also it was freezing and I couldn't figure out the air in the room and without even asking the Dr said "You look chilly, let me turn off the air" Done!! Okay so maybe the Mammo Tech was an anomaly and having a bad day. After about an hour - the sonogram tech comes to get me, is very nice, takes my blood pressure 130/90 (seems high to me, but she says is normal). Has me lie down and proceeds with the sonogram. I had a sonogram when I was pregnant so I knew what to expect, but if you've never had one before, it's a little slimy but fun. The tech wheels over a little machine with a screen and keypad on it and out of a tube gloms a bunch of gooey petroleum jelly kind of stuff on my breast and then with this rolling wand attached to the machine runs it over the area being scanned with some downward pressure. Although we could both feel the lump she had trouble finding it on the sonogram. I like watching the screen to see what she sees and I also ask questions (probably a techs nightmare). What are looking for? How do you know if you've found it? Will it always be darker? Ohh, is that it? Well, then WHAT IS THAT? How big is it... You get the idea. She told me what she was able to see looks around or slightly larger than 2cm. But for more info she has to submit it to the Hospitals radiologist and I'll get the report. I wait around reception for about 10 minutes, but no one shows up and I don't really know if I have to pay anything up front, eventually I just leave. It is 3 hours since I walked in the building for intake.

Breastmass

I discovered a hard mass in my left breast early this September. My chiropractor was lightly massaging my chest - which helps to stimulate your lymph nodes and clean out your system - when she noticed some hardness. We found that this hardness ran from my chest almost down to my nipple creating a sort of shelf on my breast. I had been feeling a little soreness in my breast and often felt a tightening similar to my breasts filling with milk when I was nursing my daughter (14 years ago!) We agreed I would stop drinking my daily decaf right now (bye bye Starbucks, sniff) When I got home my first step was my all natural go-to book on health Prescription for Cooking & Dietary Wellness by Phyllis and James Balch. They recommend eliminating dairy and wheat which I immediately did. (no more coffee which was my only source of milk anyway - but the cheese is hard, I LOVE me some cheese). They also recommended a Poke Root poultice on the breast. Searching for Poke Root took me to the website searches. I found a lot about Poke Root and it's use to aid in clearing the lymphatic system, many sites claimed it would also relieve sore breasts. (Picture of poke root left).

The other natural remedy I discovered both in the book and on the website was Reishi mushrooms. Sites claim that reishi can possibly boost your immune system, fight cancer, ward off heart disease, calm your nerves and relieve both allergies and inflammation.

(reishi mushroom photo left) I then found Red Moon Herbs - a lovely online herb boutique - founded by Corinna Wood that shared my life philosophy and had the natural remedies I was searching for at good prices (I don't get anything from this company for recommending them, I just think they are great!) My remedies arrived quickly and in good shape. I took them to my chiropractor - she tested the remedies on me and said yes, they definitely would help, take 10 drops of the poke root for two weeks and 50 of the reishi daily. Poke root is very toxic and must be taken carefully! I have since seen my primary physician to get prescriptions for a mammogram. In the meantime I have started to eat microbiotic, continue to meditate and added self healing visualizations, see an energy healer twice monthly (she's also my therapist), take hot showers and rub rescue remedy and tiger balm into my breast daily. We'll see!

Fall

It's fall and I've already started to put the garden to rest! Tomato plants are down (not a great crop this year), cucumbers and beans are done (great crops from both). In fact, we had so many cucumbers this year I finally started to "put up" veggies. Bread and butter pickles, jalapeno carrots, dilly beans and mixtures of assorted veggies in both cider and white vinegar. Oh yes, some salsa and we froze TONS of jalapenos and pesto (basil as well as parsley using either walnuts or pecans - I'm not a big pine nut fan). We planted some carrots, brussel sprouts and lettuce in September but only the lettuce is looking good.

The chickens got broody a lot this August since it was so rainy and dark, but we still enjoyed eggs most of the time. Never get Silkies unless you're willing to put in the extra work. They each go broody about 4 times a year! Which means that they want to sit on eggs and don't lay any. They fluff themselves up to keep their undersides really warm (which would be great if they had eggs to hatch - but they don't). We have a wire cage with a tray underneath which we put them in and then lock the cage in the shed in the backyard for 3 nights - that usually cures them. Here is the coop with the "brooding shed" in the background

The chickens are adorable though and people in the neighborhood arrange their schedules so they can walk by and see them in the front yard during the day.