I had a Reiki Master with me for the day - she's in the video and explains how it all works.
(Looking back at these videos I'm amazed that I thought I looked pretty good, cause I look HORRIBLE! I was so exhausted at this point, the easiest tasks were becoming a chore.)
The surgery was pretty easy. They gave me a prescription for hydrocodone which Simon was able to get filled right there at the hospital pharmacy. I was able to keep the pain down with just advil, until we removed the bandages after about 2 days. I found that the wound would rub, especially at night on my sheets and I would be in a lot of pain. I ended up taking the drugs a couple of times, especially helpful for getting to sleep at night.
Waiting for Surgery - It was FREEZING and the back of head was cold so I had to wrap the blanket they gave me around my back and over my head.
There were 2 incisions. One on the breast and one in the armpit for the lymph nodes. Surprisingly the armpit incision has healed much faster than the one on the breast. I have put vitamin E oil on the wounds daily (they close them up with a glue of some sort, no incisions) and now after 4 months they look really good.
Okay, So it's been a couple of months since my last post. I have some video I'm going to put up of past infusions. But I"ll give you a quick overview here as well. 5th infusion went pretty well. Some friends suggested fasting before the infusion which I tried and would NEVER RECOMMEND to anyone. Ok it could just have been that since this was number five everyhing was finally catching up with me but I felt sick from day 1 and normally the chemo took 24 to 36 hours to catch up with me.
Then I got highly depressed. I started to wonder why I was working so diligently to keep myself nourished with organic foods and high alkilines when I was willingly walking into a center to be poisoned every 3 weeks. I figured what's the point, right. I had a couple of melt downs in which poor Simon became the target of my anger "Why can't you support me? nobody is listening to me" That sort of tirade. Simon - rock that he is - took it all in stride, assured me that he loved me and that he will support any decisions I make.
I eventually pulled out of the funk. I've been surrounded by so much love it was hard to stay there for long. My dear friend Sandy came by almost every weekend to go for walks and bring food for my fridge. My siblings sent me hats, scarves, shirts, a teddy bear (healing bear which I"ll talk more about in a post surgery blog!, tinctures, jewelry, alternative therapies, healing stones, etc. My mother-in-law, Viv, sent me a box of scarves and hats and a ton of organic veggies and fruits. And many friends have and still send me positive notex, letters, emails, call me etc. So, I will now start posting past videos and get you all caught up.
Just got back from infusion number 5. Pretty easy. The oncologist told me all my meds were as they were last week, but she had actually upped the steroids again. Got it figured out with the nurse fairly quickly and we were in and out pretty easily.
I tried the pre-chemo fast. It actually ended up being a little over 60 hours since I ate Saturday night at 7pm and then the chemo started at 10am on Tuesday morning. The Benadryl didn't hit me as hard and instead of sleeping through the entire infusion, I slept for an hour and was ABLE TO READ for an hour and a half. I have NEVER been able to read or use the computer for at least 5 days after an infusion (and obviously I'm using the computer right now!!) I'm not going to push it though. Once I get off this and check emails, I'll just do a cursory email check twice a day - unless I still feel great.
It may not have all been the fast - my dear friend Tracy met Rabbi Stanley Kolt at a solar convention and started talking about energy for healing - Tracy is an acupuncturist. It just so happens that Stanley built a machine based on Scalar electricity that he says can regenerate cells. Layman's explanation: any mutated or bad cells vibrate at a lower voltage than strong healthy cells and if the body can appropriately regulate its energy, healthy cells take back their electrons from the unhealthy cells, leaving them to be eliminated. Jon Barron describes it much better than I can here http://www.jonbarron.org/natural-health/remedies-special-reports-scalar-energy.
Stanley's machine is super simple - it consists of bronze and copper and runs a 12 volt through the ring that you wear around your waist or neck or legs (perpendicular to your body). I joined Tracy, Stanley and 2 of Tracy's other friends and for 3 hours we all sat at Caroline's house with the rings around each of us - chatted and laughed, ate apples and avocados, drank tea, and took pictures or felt the differences in our particular ailments throughout the 3 hours.
There were a number of ailments present, a sciatica or bursitis complaint through a hip and down a leg, my tumor, scars with raised centers, ruptured blood vessels, etc. We all witnessed or felt palpable changes. Everyone's faces definitely opened up and became more vulnerable (it reminded me of how people look after they skydive - like they are a kid again, totally eager and childlike). I took one of the rings home to try out.
It was hard to determine if we all really noticed differences or if we were in a sort of mass hysteria stage, all confirming that there was change. I used it again Sunday night and Monday night. It seemed to me that daily the tumor was getting smaller. But was it all just wishful thinking? Had I lost my objectivity. Today when my oncologist felt my tumor she said she thought it had gone from 3cm to 1cm and felt much more rubbery and soft. She said the cells could even be dead and just aren't sloughing off yet. Wow!
It's Spring and that gets me excited about gardening which gets me excited about growing and EATING food.
Last Friday I had lunch with my dear friend Maureen and afterward we walked over to our community garden and she gave me a bunch of stuff she had wintered over. I walked away with tons of kale, sorrel, onions and garlic. Encouraged, I came home and pulled out some carrots and arugula - and instead of being discouraged that my brussel sprouts never sprouted, I pulled the plant and the leaves taste like broccoli - delicious.
I've started watching The Chew on Channel 7 cause all they do is cook food. They had a great early spring recipe that I decided to change slightly and try. Here's the video of the food from my house (with 2 fresh eggs I pulled from the chicken coop) and the video of what I cooked with an explanation of what's in it.
Carrots, arugula, and brussel sprout - with eggs.
I placed the onion and garlic in a sauce pan with olive oil and let it sautee then added the the carrots, kale, brussel sprout leaves and sorrel with some tumeric. I dashed in a little white wine and let it simmer for about 5 minutes. I then added some grilled chicken from my dinner the night before with some tumeric over all of it and let it simmer for about another 3 minutes. Pulled it out, drizzled some more olive oil and sprinkled it all with parsley I dried this fall/winter.
I've also been juicing ALOT. In the mornings I have a fresh organic juice drink which I wrote about in the last blog - but in the afternoon I have a veggie drink. Usually start with a couple of apples and about an inch of ginger, then juice about 6 carrots (no need to skin anything) - today I added 4 leaves of collards, about 5 handfuls of Kale, a few leaves of sorrel (they are a little bitter) and the rest of my arugula - about 2 handfuls. That made a pint of juice! And it was delicious!
On another note, my friends Chad and Gretchen told me about a study they had read about fasting for 48 hours before chemotherapy can get rid of any side effects. I decided to look it up -and so far they haven't done any human studies - but it certainly works on mice. The idea is the starvation causes the healthy cells to protect themselves but the cancer cells leave themselves vulnerable, so the chemotherapy becomes targeted instead of just randomly destroying all cells - cancerous AND healthy. I have my next infusion this coming Tuesday and figured it wouldn't hurt to try the 48 hour fast beforehand. I'll let you know how it ends up!!
Wow! Somehow time is getting away from me. I keep thinking that I need to write a blog and then suddenly its' a week later! Infusion #4 was actually really easy. I knew the oncologist was not going to be there, so I met with her RN who was GREAT! Why can't Doctors learn how to relate to people the way so many others in the medical environment can. We discussed the steroid intake and agreed to lower it again to 8mg. (I started at 25mg). She told me how my weight changed the carboplatin dosing - something no one had ever told me before. My weight was down to 183. That is 42 pounds lost since November, all from diet change. I'm feeling much healthier and am eating better than I ever have. If it wasn't for this pesky chemotherapy I would be great. Still taking about 6oz. of the essiac tea daily. I have fresh juice every morning with Dr. Schulze's Super Food Plus - amazing, it has all my essential vitamins as well as 3 kinds of algae, 3 kinds of grass, seaweed, spinach and some roots and fruit peels. I feel great after consuming it. This past week was much easier than any of the other infusion weeks - I had a little acid reflux on a couple of days but never the stomach rolling queasy nausea. Before, I stayed in bed on the Thursday after - this week I was able to get out of bed - even spent a couple of hours in the sun in the backyard. Yes! You read right - SUN! It is warm and sunny here in NYC. We've been getting little spurts of rain, but nothing major. The daffodils and hyacinth are in full bloom, my lilac has HUGE buds just waiting to burst and the quince is almost finished with it's bloom. I too feel a bit of rejuvenation and new spring in my step. Only two more chemo infusions to go. Of course the herceptin infusions last throughout the year - but they are much easier although still a heart risk drug.
In early April I'm to meet with the surgeon again, have another MRI to make sure nothing has spread and schedule surgery for early May. I leave for Idaho in early June for the Playwrights Conference and my family is having a little gathering in the town in Idaho my great grandparents on my Mom's side settled in.
Simon comes home for the weekend and I'll have to get him to take some photos of me in all my hats that my beautiful siblings have been sending me.
So, I'm hanging in and if time doesn't get the better of me - I will report back soon.
No better place to spend Valentines Day than in an infusion center (note sarcasm). Cancer cells thrive on sugar - so guess what they were giving away? You're right chocolates. From the intake desk to the infusion suites. It was sweet that they are trying the acknowledge the day, but I am amazed at the lack of nutrition awareness given to cancer patients at the center.
February 24, 2012
This week has been much easier on a whole than the other two weeks. Far less nausea, didn't have to take any extra ginger or drink any ginger drinks, etc. I do notice a greater fatigue and sometimes I get dizzy. I walk fewer miles in the park, but it takes me the same amount of time. I find myself staring into space and then wondering what I was doing. I prefer my bald head to scarves or hats, but when I get chilled, I am very grateful for both (Kitty and Neil). My friend Katherine gave me her wigs from when she was being treated, but I haven't had an occasion to wear one yet. I also have a prescription for a wig!
I was able to manage my nausea during the week - ate every 2 hours - didn't go in any moving vehicles (except an express bus to downtown Brooklyn last Thursday). BUT, here's the thing. The uneasy stomach and feeling on the edge lasted for far more than the 3 days it lasted after Infusion Day #1. Last night was my first full sleep since last Monday and today I woke up feeling pretty good. Well enough to go out and walk in Prospect Park on this gloriously warm day. Soooo, I haven't thrown up and I can still eat and taste everything - although when I'm not eating my mouth does taste slightly metallic. Oh, I shaved my head!! Actually Simon and Fallon did - we have video but we need to winnow it down before I put it up here, but I will do that soon. In the meantime, here's a lovely photo that Simon took while I was sleeping at the infusion center last week.
Went in for the second infusion today. Super easy once again - intake, blood test, meeting with Oncologist and then about a 5 minute wait to be given our room in Infusion Suite D. We chose an outer room with a window and sunlight pouring in. Here's a video from the end of the day at the Center.
Blood was great, all the cell counts had risen and were great numbers. The tumor is changing - it feels thinner, and not as swollen. Dr. Crew felt there was good movement for the first 3 weeks and we are all encouraged. It's the evening now. I feel great, no nausea. We'll see what happens this week with the lowered dosage of Decadron- the steroid (went from 20mg to 10mg). The Taxetere is still at 3x - it will go down next infusion - making the entire infusion time 2.5 hours for the next 4 infusions (today the actual infusion took 4 hours). We kept the Benadryl at the same level of 25mg. I realized that next time we should do a little tour of the entire suite, not just me sitting on the chair - which we figured out to totally incline this time. There seems to be a bit of learning curve, but it's starting to feel like a routine.
This video doesn't have the greatest quality for some reason, but you can see what it's like to be losing your hair on chemo. My doctors said it would start to thin around the 3rd week, but I didn't know what that meant. I would say it's a little more intense than "starting to thin". Fallon thinks the hair coming out looks like people pulling their memories out for the pensieve in Harry Potter. All I can think of was Hedda Gabler!
I couldn't get to the computer yesterday to report that I had a very easy week - no nausea, no fatigue. I was thinking this was all going to be so easy.
Well, that isn't 100% true. My skin is drying out and I am starting to scratch open some pieces of skin. Especially along my knuckles and chest. Nothing unsightly, just annoying to me.
About an hour ago, my follicles on my head started to ache a little. I needed to shower for a meeting, and when I started to wash my hair, it came out in my hands in strands, then in little clumps. Mainly from the back of my head. Here's a video in which I seem to be not too concerned about it -
BUT, NOW, everytime I touch my hair it comes out in my hand. I just shoved a hat on my head which I will wear into Manhattan and during my meeting, then I'll see what the damage is this evening when I have a better chance to assess the damage. Crikey!
I got an email from my sister today wondering why I hadn't written anything since I sent out the blog - 3 days ago!! I plan on doing weekly follow-ups so if I don't write anything between these it just means nothing has happened.
Week 1 on chemotherapy. I had no idea what to expect, everyone had differing stories - but no one I know personally chose the TCH once every 3 weeks therapy - so I went to the internet and followed other people's stories and questions. Tuesday was the infusion and afterwards I was very drowsy and slept most of Tuesday afternoon/evening. This could have been because of the Benadryl, it also could have been jet lag from just returning from Hawaii. Having slept for 3 hours Sunday night on the plane and then tossed and turned for 5 hours Monday night in anticipation of the unknown of therapy.
Wednesday I felt pretty good, had my usual morning juice drink and headed off to Manhattan to meet Jeni to rendezvous about 2012 id stuff followed by my last visit to my therapist Diana. (Last visit for therapy - I plan on going back for healings, etc. Diana and I have been together on and off since 1988 when I first started to attend her channeling classes - I graduated from her Open Heart Channeling School in 1995.) On my way home that evening I started to feel queasy and had to put my kindle away. When I got home all I could think of was drinking one of the Ginger Soothers (a ginger/lemon drink that Simon found for me). Ahhh. That helped a lot.
Thursday morning I got up and just felt off. My stomach was rumbling and nothing sounded good. Mention of food gave me a little gag reflex. I tried some nuts and immediately felt better. I went into Manhattan to work with Julia - a middle schooler I've been working with on her highschool auditions, she had a call back for PPAS and I went in to work with her for one more time before the call back. During the session I felt great, but I was really focused and we were jumping around and doing improvs - my mind was off my stomach. On the way home though I felt very queasy - never to the point of throwing up, but enough to make it very uncomfortable. Simon made miso soup that night - it was delicious and the broth was exactly what I needed.
Friday morning again felt a little off. I realized I needed to figure out food and schedule it on a regular basis - every 2 to three hours, small meals, so I never got to the point of nausea. That evening I still felt funny and laid my righteousness aside. I went and got pizza and beer. After a slice and a beer I felt fine. I've since gone back to my no gluten/dairy/nightshade/acidic food diet, but that pizza and beer worked like a charm.
Saturday I felt great. I had earlier begged off on going to take care of Noa - Jeni's beautiful daughter I have been helping with since last January - I guess I could have gone into Manhattan, but the idea of a subway ride was beyond me - so I was glad I had cancelled.
The rest of the weekend was uneventful. Spending time working and reading scripts. On the nauseous days I couldn't read scripts. Especially not on my kindle fire - the page turning was making me dizzy!!
So - if the rest of the five infusion weeks are like this one - as long as I manage my food intake and have plenty of ginger products about - I should be fine.
Oh did I mention my travel bands (sea bands). I've been wearing them and I think they are a huge part of why I wasn't more nauseous.
postscript - I also have discovered the most amazing dessert. I know I'm not supposed to have much sugar - but this is fantastic. No dairy - no soy. Purely Decadent (that's what it's called) made with Coconut Milk - Passionate Mango. Organic Coconut milk, organic agave syrup, chicory root extract, mango puree, passionfruit juice concentrate, carob bean gum, guar gum and natural mango flavor. Made by Turtle Mountain in Eugene, Oregon. Wow!!
January 3rd, 2012 - After I heard this statement for about the 5th time today at the center, I decided maybe it was time to consider cutting my hair. I thought it would be a chance to donate the excess to Locks of Love http://locksoflove.org - they have a donation form online at their site and it is super easy. Fallon volunteered to cut it, so it seems like the time is ripe! So, here goes.
December 6, 2011 - Went into Columbia/Presby for an MRI this morning. I like that I don;t have to wait around for much of anything. I got there and within 5 minutes they whisked me (and Simon) to another section. There was a waiting room for him and a dressing room with lockers and a bathroom for me. I put on a gown and footies and locked all my stuff in the locker. Simon held onto my key to the locker for me. Again, they almost immediately took me over to the MRI room. I met Juan and he gave me an IV load of Multihance. Basically Multihance is used to get what they call a contrast reading. So they do a regular MRI - this is a magnetic reading - and then do an enhanced one with Multihance. Using Multihance shows a greater contrast in the pictures with people with known lesions. So they have the regular MRI and a higher contrast MRI to compare. Everybody was really sweet and all kept telling me how uncomfortable the MRI table would be, but it really wasn't. There was one snafu though - the Dr's notes mentioned that he had wanted me to get a clip inserted (a small clip that gets embedded into the tumor so they can determine how much it deteriorates over the course of the treatment, and where the original tumor bed was in case we eliminate the entire thing). I waited on the table for about a 1/2 hour while they straightened that out. It was decided to go ahead with the MRI and then I would go up and get the clip after. MRI's are music makers. They have all these different rhythms and clicks and sounds that go with the machine - I kept finding myself making up songs to go with the rhythms and clicks. I also fell asleep for awhile. After the MRI - I got dressed, found Simon and we went back up to the 10th Floor. Here I waited for a while, but I didn't really have an appointment. I got called into change (again) and wait in a different room for the clip insertion. While waiting an Asian woman around my age started asking what I was there for, she was concerned because they wanted to see her due to a calcium deposit in her breast. The only problem was that she couldn't remember the word calcium, we finally figured it out when she started telling me it was in milk and bones... it felt a little like charades. I let her feel the lump in my breast and she said she didn't have anything like that. While we were chatting another younger woman sat down near us and burst into tears. I couldn't just sit there, so I reached out and asked if she just got bad news. She said not yet, but she knows that she has cancer, she can feel the lump and she is only 35 and has a little baby. I told her to concentrate on her baby daughter and think only good thoughts and be positive. She calmed down and was called into her Mammogram. I was then called in to the Sonogram room. They located the tumor on the sonogram, same process as before and then put a thin needle into the tumor and released a tiny marker (clip) into the breast. I had a quick mammogram after that and was sent off. I ran into the young woman from the waiting room on my way out and we exchanged phone numbers. She's going to keep in touch and let me know how she's doing!
Everything went smoothly. We were there for 5 hours of infusion time, 7 hours all together to get blood work, then see Dr. Crew and then into the infusion suite. Our nurse Sarah was great, gave us a lot of information and wrote down exactly how much of each treatment we were getting and how long that would take. The first infusion was of Benadryl which put me out within about 1/2 hour. I slept through most of the day while Simon watched over me and got me water and made sure I didn't lose my blanket and pillow. I wore my travel bands throughout the entire infusion, never felt nauseous but am still tired tonight! Probably from the Benadryl/Jet Lag combo.
December 1, 2011 - After meeting with Dr. F - we decided he was the right surgeon for us. Dr. Sheldon Feldman is the Head of Breast Surgery at Presbyterian Hospital at Columbia University in Manhattan, NY (Columbia/Presbyterian). I really like him and Simon feels at ease with him, even if he was over the phone. I made an appointment with one of his oncologists Dr. Katherine Crew and we meet with her on Tuesday the 6th. Dr. Feldman's office scheduled an MRI for me that morning so it will all work well. The only downfall is that it is all the way up in Washington Heights and a bit of travel for us. But, I used to work at the Social Workers College back in the 80's so I remembered the commute - and the neighborhood still feels amazingly familiar! I still haven't met my Patient Navigator Nancy, but I will stop by to see her on Tuesday. Just now, I got a call from Dr. Feldman's Office asking for a blood test, I have a script for a blood test at my PCP's office which is much closer, I'll go do that tomorrow.
