An Oasis of "Hope"

Hello Dear Friends,

I am on a wonderful healing adventure in Mesa, AZ. I am going to an incredible holistic clinic called "An Oasis of Healing".

With Dr. Thomas Lodi at the helm, he has created an "Oasis" A breathing space, a healing place. For me it is the lifestyle, foodstyle, spiritualstyle, medicalstyle, bootcamp I have always wanted!

I decided to learn how to "stop making cancer" ( I have had 6 recurrences now) and enough is enough already. It is wonderful to see hope, happy faces, people getting better, doing well and to speak with a doctor who says "yes" instead on "no".

Jack and I met with the doctor yesterday for an extended consultation. As we talked I could see how we could all just "up" the notch on what we were talking about. Finally, a doctor who is informed, knows so much more than I do, rather than the other way around.

At the nutrition center we had lunch, a most delicious raw meal prepared by their chef, and also enjoyed being in the sun. Glorious! Hope is here!

2 weeks and 2 days

Two weeks and two days. That's how long I have been off the Oxycontin. If you know anything about addiction to hard drugs, then this you might know is catagorized right up there with heroin. It's street name is called Hillbilly Heroin in fact.

I was given it for pain, and it worked like nobody's business. However after two weeks the body starts to get used to the drug, and an addiction forms. No doctor actually warns you of this so beware. Only after I said I was tapering off did my oncologist say he could help me get off it. Even with help eventually one has to stop cold turkey. How bad can it be you may wonder?

Ever had bugs crawling inside your skin, or want to literally cut your legs off because of the restless legs it gives you. Want to just have tantrum after tantrum. Scream at you loved ones for no good reason, then cry about it. All this and further there is diarrhea, stomach pain, nausea, and loss of interest in food. It now makes me crazy just writing about it.

In Florida two weeks ago, I spent three nights up until 5am, exercising, listening to comedy tapes, knitting, praying, meditating to finally not have that last 5mg capsule. It was really hell I must say, but knowing in the morning I had made it through the night was reason to celebrate. I called my husband, danced around to Chakka Khan, and called my dear friend LaVonne. I had kicked it.

I am still feeling the residual withdrawl, a tickle here and there, but it is really mild. I feel like I am back in the game- finally. Oxycontin and its sister Oxycodone are so addictive, I learned, they like to hang out in ones muscles, just stay there for a long time, and as a result, that makes one still crave the drug. And I do! Heroin does the same along with other narcotics. How fun!

More to come but wanted to make this my first post of the new year. So think twice about getting that prescription refilled, it really is dancing with the devil. For now it is only Tylenol and Advil for me folks!

So Over

My radiation is finally done, but leaving me feeling weak and frail. The cumilation of which last Tuesday evening had me in the ER then, in the hospital for three days. It seemed hi dose radiation did not sit well with my body, which went all out of whack. This is normal yet, I went over the top, and felt it more than most. I had terrible stomach pain, cramps, pelvic pain, vaginal bleeding, had become anorexic, my body just shut down. It was shocking to me how quickly that can happen when you have stage IV. At one point I thought "will I get out of hospital?" and "why I am I here?, is is worse than I think it is?" Creepy.


I am out now, feel so much better, tons, just a bit washed out, and of course radiation tired. But now I am on several meds to calm my stomach down, stimulate my appetite.

On the fabulous side, most of the bone pain is gone now which is fantastic (I still need to use my cane for balance and flare ups). Hopefully, in a couple of weeks I can return to my routine.


One thing that is funny, but actually sad is hospital food. How can I eat when all they serve is crap. I said to my mother, I feel like crap, so maybe eating the crap is good. I certainly loved the off the diet pancakes and maple syrup!

Radiation Day 12

Feel sick, nauseous, almost done with only three treatments left. Pain is a little less which feels like a miracle. Mum is here, she is a gift.

Need to rest.

-again, more later :)

Radiation Day

More to come, but first I need to drink banana flavored barium tracer for CT scan afterwards. Yum!

Mojo!

Brad a friend of mine just sent me this wonderful image of Spiderman to get some of Spiderman's mojo. I need it. Bring it on!

Today I get my MRI and next week a bone scan and blood test ( I am already sick about that) Anyway one of my dear blogger friends talked about the waiting game. It is so true, I have been waiting for I don't know how long now to see exactly, absolutely what is wrong with these bones. To confirm or unconfirm, because the Johns Hopkins doctors after seeing the PET scan confirmed bone metastasis. So what is the problem with that you may ask. Well let me tell you...

The reason for the unsure thing is that in Maine, (on holiday this summer I had increasing pain from a fall I had a two months earlier) the X-ray I had there was read to be possible bone metastasis, when we got back from our trip, I met with the the top Johns Hopkins Bone Dr. she said no couldn't be, it's bursitis- have some physiotherapy. Johns Hopkins RFA guy said doesn't look like cancer, 98 % not cancer. Then after reading the reports, Dr Bone said it is cancer always was, and RFA doc said 98 % is cancer. What? How can that be? You said before? Hey! I'm confused!

Thankfully, my new husband called his doctors who rallied around and I now have a new oncologist and GP who want to know "what is in there?" Hence the MRI and bone scan. With all this waiting I haven't just sat around on my bottom the whole time, as you read I got married (to the most wonderful man in the whole world!) in addition I started my own physiotherapy (get that blood moving!) Just learned to do Reflexology on my own feet! Switched off some of the potent pain drugs and onto a natural one White Willow Bark, which is awesome! as the oxycodone was making me very stupid, and very much in my own world- so much that I fell and put myself in bed for a week (good going!)- What else, made myself buck up, and go back to a mostly raw diet, give up salt, do the coffee enemas, detox saunas, and practice the "8 pieces of Brocade" Tai Chi exercises in the morning. I am feeling so much more awake! Hallelujah

In conclusion, friends, I need the warrior Spiderman mojo to help me through the next medical game show, and hopefully, they will agree to what is really wrong, at least 98% sure!

Then there is the lump in my lymph node in my neck. All agree "yes it is" that's a bummer. More waiting " Jeezy Creezy" as Eddie Izzard says. Tell me how do I get off this thang? I have a headache!

Life is Beautiful

Hello,

Even though the dumpster truck has left steaming garbage on my lawn again- Jack and I just got married, and I couldn't be happier about that. The first time I was married I was so adamant about keeping my name. Now having new one is so refreshing, makes me so happy, perhaps it will give me some new mojo too. Legally I am still Felix, but once I attack all the paperwork I will be officially Mrs. Charles "Jack" Garrettson. So cool!

We were married in Maine, just last week on a lobster boat in the middle of Penobscot Bay, near "Hell's Half Acre" isn't that fabulous. Had lunch, a long nap (well we are all getting older), then had dinner at a fun restaurant. I forgot my troubles for a week, had champagne, ice cream, ate the most delicious food (not on my diet) including the best organic fresh chevre that was out of this world.

Now here in Pottstown, I am back to scheduling my MRI and bone scans, blood work (yuck) and working on my warrior self. Next week the greatest of head nurses (my mum) will be coming so that will be the best tonic for sure. With my hubby working full time at the boarding school teaching we can all keep our stress level-level.

So I am still waiting to see what medication I shall be on, and what will be the game plan next. Hanging in there and appreciating the love out there.

Green Goblin

Hello Friends,

Just when you think it is safe, a new little twist, a new little wrinkle appears-and I am not talking about my face! New cancer cells, it appears, have taken up residence in my hip! Actually it is the Green Goblin from Spiderman. Painful bugger my god! I thought the pain was just me getting well "old". A new hurdle, a new level of understanding.

Make love not war is great, but I think I need to ratchet it up, and be more warrior like as I need to kick some butt! Goblin butt! I had my "step son to be" Ash draw a huge poster of a warrior wolf for me to meditate on when I do my detox sauna. It works quite well, it makes me feel feisty which is good no? Tuesday I will finally start Tai Chi, which I have been saying for months, but now I need to kick my own butt if I want to get strong.

Next week the appointments start, to confirm and make plans on what to do. Dr Weber, Dr. Sivieri, and then Dr. Georgiades. My dream team- I must say I believe they are the best! As for me I have already made myself quite the expert from both allopathic to homeopathic ways on how to deal. I found one remedy that mixes ground flax seeds with champagne twice a day! I told Jack now that is living! A girl should always have champagne.

More later, just wanted to check in with you all.

Kiki

New Man in My LIfe

Meet Dr. Christos Georgiades a new man in my life that offers ninety percent of hope. Let me start at the beginning.

Several months ago I started to research ways to remove tumors from the lungs, and came across this procedure called Radiofrequency Ablation (RFA) which is an amazing procedure done with a thin needle that heats up tumors. Tumors love dark, cold, damp places so this intensive sunshine delivery system brings high heat to the growths, and stops them in their tracks. Prima! Good day sunshine I say.

Anyway, I was shocked that no one at Johns Hopkins had suggested this procedure to me, as it is for people who can't have surgery (that's me), who are looking for a minimally invasive procedure that won't spread the cancer, (that's me) and not looking for a total cure, (that's me). So what is problem? Doctors don't share so the patient can have the best chance? I asked my oncologist about a recommendation and what he thought, his response "I don't see how RFA will help you". Shocked again, I was stunned that all he wanted to do was to keep me on hormone treatments (that actually aren't working that well) which means I will just end up as a statistic and not a very promising one. In my mind Dr. Wolff was fired. Isn't he supposed to be helping me? I can't begin to say how angry I was, and I have to admit his response made me jump back into my safety shell, however with the urging of my friend Brigitte she pushed me to get on with finding a specialist of my own, and voila! there he was Dr. Georgiades of radiology at Johns Hopkins. I met with him and his staff late April, and can report his team are a professional and friendly group. The good news is May 26th I will be getting my five chestnut shaped occupants zapped. Dr. Georgiades explained that while there is ninety percent chance of killing the tumors at the very least I can expect some shrinkage- and that will mean more time. Something I need while I make my body strong.

I am starting to feel scared, but also trying to embrace this new adventure. Too bad I couldn't have one year without surgery, but at least this offers so much in return. Hope.

Working Backwards To Now

Hi Everyone!

It has been ages since I updated you all on what'sup, so much has passed, so many changes. Today however, I thought to just dig in, get on with it, and we can catch up as the months go. With that in mind I decided to work my way backwards.

I just had a most delicious salad of advocado, carrots, and tomatoes. How pleasant it is to have a salad when spring is on it's way, and the sun is shining. Winter was hard going trying to find food that I could eat that was raw-who wants a cold dinner when it is snowing outside! Naturally all the good stuff was verboten! With the help of my friend Brigitte, we came to a compromise- going halfway seemed best. A little cooked, a little raw. The middle way-how Zen! With all the research I have done, apparently we were on to something as going completely raw too quickly is not so smart- lots of gas, indigestion, nausea. It can be really hard on the body to make such a shift from "crap" food to "wunder food" If you haven't read it try and get a copy of "The Raw Food Detox Diet" by Natalia Rose is a wonderful way to get going to a more healthy way of eating, plus there is some weight loss too. Talking of weight loss, I just lost 5 lbs from a virus I caught- certainly it has given me an opportunity to look a my diet more closely as well as watch my immune system.

Lately, I have been in a bit of a funk as I realized so many of my plans have not gone the way I have expected. Has that ever happened to you? All is planned out like so, this is going to be like that, that is going to work with em - oh no - no matches at all! Hey! Argh! Hiss! After a good sulk, sometimes you just have too before the epiphany, the reality of the situation really forced me to take a much larger view, and really be more adaptive to life's shoves and nuances. Who says those plans were going to work out anyway, just because I made them were they perfect? Apparently not, not as far as the Universe is concerned.

The real jewel in the crown for sure is actually on my finger! On Valentine's Day my love "Jack" asked me if I would be his wife. It was one of the most romantic moments of my adult life. So even though I am faced with so many challenges, I have someone, a companion, and bestfriend, who wants to help me through them. That is Grace, and makes going backwards more like going forwards!

Make mine with gravy please!

This past month I have been working with a much tighter regimen under the special guidance and help of the wonderful Dr. S. - 5 days detox sauna, at least 5 coffee "you know what's" a week, eating the usual vegan fare, and trying really hard to eat as much raw food as I can. However, tis the season!

So far I have stayed away from the usual office "goodie" baskets that show up at this time of the year, with only one really naughty incident that occured after being tempted all day by one very fully loaded chocolate filled woven basket. As I whisked by it at the end of the day, I grabbed a Hershey's kiss and mini size milky way bar, and scoffed them down so quickly I wondered if that was really me, and did I really do that? Most importantly it was not such a big thing- just a little regression.

One thing that it really helping, because it is so hard to eat cold food during the winter, is to put some gravy on it. And who does not love gravy? At our annual holiday lunch at my job, they had the big turkey-beef-stuffing buffet thing, and I found a little moistening really helped to enhance my vegetarian plate. I think that is oh so clever of me to come up with that. I get a bit of tasty fun and warmth, and eat my vegetables too!

Two Steps Back

Mildred, Daisy and the triplets (my 5 tumors) let it be known in my recent CT scan last week they needed to stretch out a little, they were feeling a growth spurt! Only a few millimeters but as my dour Oncologist put it - "it is real!" What happens now? - trick my ovaries into believing they are not working- how do you do that?- err we shove a huge needle into your abdomen wall and say "you might feel some discomfort" and we fill you up with hormones each month. I think this is the stage where the torture starts to begin.

I am trying to keep the faith. Do more infared saunas, no alcohol at all now (agh!) or coffee (how worse could it get) no dairy, meat, fish, poulty. I was doing quite well, but I fell off the wagon a bit, and as a result, these cancer sisters let me know they are sincere about doin'n it for themselves. My message to them- we're in this together ladies- don't go off by yourselves. This is a team thing. And as a friend of mine says "I'm serious!"

My mother just bought me a beautiful juicer so I can have fresh carrot juice every day-something cancer is not so crazy about. I had some this morning with broccoli and pineapple. It was okay- quite refreshing actually. Also I am experimenting again with my dehydrator- mushrooms, portobello mushrooms, they make a great third thing on the plate!

How about a raw pumpkin pie for Thankgiving-it can be done "I'm serious!"

Love to all my dear friends.

Lifted by Art

One of the things I recently renewed in my life has been my love of painting. This happened the other day when a special friend of mine Kathy, offered me the use of her studio while she was out of the country. I accepted, but was not really sure if I could do anything, I had been so tired- how inspired could I be. It took a while to settle down and focus, but once the paints were squeezed out of the tube the genie was out of the bottle!

I first did some very small pieces about 3 x 3 inches (that is how intimidated I was) then worked my way up to 12 x 12 inches, and finally created a work 30 x 30 inches. I would not have even done the larger one had it not been for my dear friend Charles who pushed me to get on with a challenge. Annoyed at such pushy behaviour from him I ventured up scale. I am so glad I did.

Art has the ability to give so much to the painter, as I am witness to. The special dialogue one can have with one's creativity, and sources larger than oneself can be intoxicating and rejuvenating. The last few weeks have been the happiest, and I know that joy has a very positive effect on the immune system. So while I detox in the sauna, get my old fillings removed (mercury), and try to adhere to my "new life" protocols, I added an old one...painting.

And thank you again Kathy.

The Long Slog

One of the hard things about trying to "save ones life" or at the very least put off "certain death", which we all face as soon as we are born, is what I call here the long slog. Without a daily measure, like a scale when one is trying to loose weight, it is so hard to follow one's progress. Usually I have to suffice with peeing on a piece of paper to see how alkaline I am, but it is not so accurate. Naturally, I can have blood tests and scans, but as you read before those are not handed out so easily. What that does then, this not having a gauge, is to make a person very hypersensitive to every ache or pain, temperature change, an "odd" a mood swing. A constant inner voice says "What's that?" "Did you feel that?" "That's so noisy!" and "what does that mean?" I am a bit exhausted as you can imagine.

Still on the brighter side, super sensitivity can have it's plusses. It is amazing how much more alive I feel. Food never tasted so good. Silence never so sweet. Words more lyrical. Nature all the more breathtaking, and friendships all the more precious. That in a perverted way makes this journey so very interesting and fulfilling.

From Disgruntled To Ungruntled

Getting frustrated again with my oncologist (Dr. Antonio Wolff) who was making it difficult for me to get my 2 month CT scan, I turned to my breast cancer surgeon and friend (remember I called him the disgruntled husband the other week) Dr. Ted Tsangaris. I just had to know what those naughty little tumors were doing. Working on changing their attitude or just partying! I knew if I had a chance to explain what had gone on over the past few months Ted and I could get back on the same page. Yup, we did it, and so as my buddy again he grabbed a pen, and filled in the form so I could get the scan. He also told me not to expect too much from the Tamoxifen as it works slowly, and things might be the same as two months ago. That's fine with me, I told him, no change would be good, I would rather have the same chestnut size tumors than new bigger ones with horns looking for trouble. Waiting for the results was a tough 24 hours but I made it, and Jasmine (his social worker nurse) called me to let me know I was stable. Ha! Ha! No change! Fabulous! I was stable! Not many people can boast that, and I now have the paper work to prove it.

It seems then all the love, raw food, detox, coffee (you know where) and the Tamoxifen are rallying to the cause. It makes me want to keep going, and surely isn't it great how some people, even if they do get disgruntled will ungruntle themselves, and just do the right thing. How happy Ted has made me, my family, and friends too. Yey Ted! Your the best breast surgeon a girl can have!

Acts of Kindness-It Saves My Bottom!

Hi There My Dearest Friends (and when I say "friends" that includes family too!),

Last week was really hard for me, so many set backs, yet I wanted to just thank all the people in my life who were there for me. Some of you let me cry on your shoulder, others offered me the scratchiest tissue the world has ever seen, others of you appeared at my work door to just say "hi", gave me a reassuring smile. There were sweet hugs, a thoughtful email, a card, a lunch and a couple of great projects assigned to me to get my creative teeth into. Then there were the hard core of you that could hang in there for the long talks and tears. I thank you for holding my emotions for me- because that what you do- you hold them, and that gives me some relief. How lucky I am to have so many dear supportive friends.

I am truly blessed!

Allopathic + Homeopathic

Good News Dear Friends!

I met with a medical doctor who also practices complementory medicine too. I am so pleased. Dr. New Hope for Kiki, or Dr. S gave me the plain talk, the truth talk, and many options, but more importantly a plan. He also agreed to be my central person for healing and getting me better.

The plan is to keep taking the Tamoxifen, which he feels will assuredly shrink the tumors, detox my body (using the most civilized and also not so civilized ways to get the crud out) and keep to the raw food diet. Body work and psych work are also up there too. He said many times a trauma, or blocked stresses cause the body to be in a constant state of anxiety which causes too much adrenaline to circulate around the body, then combined with other factors, some we cannot control sh*t happens! Yikes!

My other news is that I bought a dehydrator so I can cook food without destroying it's powerful nutritious enzymes. At high temperatures many vitamins and minerals are lost in our food, so by cooking at a low temperature 118 degrees I can get the most out of my healing recipes! Combined with my sprouts and raw fruit and vegetables, I have noticed my skin is softer and more radiant, and even though I feel tired, and sometimes grumpy, my energy level is rather good. I am comforted to know I am giving myself the best boost I can.

Next week I will tell you about the Infrared Sauna and my visit to Fountains of Life (colonic time!)

Love Kiki

Stephen M. Cattaneo II, M.D.

Yesterday I drove up to Hopkins again this time to meet with thoracic surgeon Stephen Cattaneo (the lung man). After waiting a while I was told there was a mix up about where I should be, so off I went to another building to meet with the doctor, on the way I bumped into my Breast Surgeon Ted Tsangaris, after all the greetings, he asked me how I was doing "mad" I said (not the right thing) as his face changed into a disgruntled husband. We then exchanged some not so nice words, however ended up with a hug and "I'll see you in a month for your check up". Now I really felt like poo (US-shit) as he was my buddy from 12 years. Why should I feel bad I thought, why should I be made to feel hysterical - I have cancer, not just cancer but metastasized cancer- I pressed on to reach my destination in the offices of "Thoracic Surgery." The receptionist informed me I had made a mistake with the time, I was late, and generally blamed me for all of the changes in regards to the time and location. That was it for me- the July 4th fireworks started early- I threw my bag into the chair, and said to all that "John Hopkins was NEVER AT FAULT!" "What's wrong?" the receptionist asked "Oh just cancer" I replied sarcastically and with that the tears came- I was so embarrassed, no tissues, and no composure, how un-British of me, but I was tired of being a "good sport" about all this. Quickly I was ushered into the conference room where I was presented with tissues and a glass of water. I felt like a mad woman- was this the mood swing of Tamoxifen? No I think sometimes it all gets to be too much. Think about it, it has been weeks since I had any sugar, wine (no plumy bouquets or toffee finishes for me), no coffee!!!! That in itself would cause a meltdown in anyone.

Next the Nurse came in, and I let her have it all... poor woman, I was however lucid enough to say it was the doctors who needed yelling at not her. After our "talk", and about 20 minutes later, Stephen Cattaneo, sat down to talk to me about my options. Like my Oncologist Dr. Wolff he to felt I should wait for two months take the hormone therapy, and see if the tumors shrink or not. Quite frankly, that wasn't good enough for me, and I told him so- while I would follow their protocol I was not impressed- there aren't many options at this point for any type of cancer. It is always the same; surgery, chemotherapy, hormone therapy, or radiation. If you think about it- with all the funding none of the protocols have really changed, they are still doing the same old thing. That is why I have changed my diet, become a vegetarian, and only (most of the time) eating raw food. Wheat grass in and up unmentionable places, funky music and lots of dancing. I've researched that can really help.

Monday I see my favorite therapist from the past Rosemary (I always liked her) to get my head shrunk a bit, and then Tuesday I have an appointment with a homeopathic doctor to get some complementary medicine counseling- I will let you know how that works out. Also just to gross you out even more, I have called the lady who does my colonics- that is a lot of fun, plus you instantly lose 5lbs. You can't beat that for a boost, now can you!

Happy July 4th, and with each bang you hear think of my little and not so little tumors bursting into the air to be re-born as new healthy happy cells.

Tamoxifen

Hi There,

This weekend I had my first hot flash (or flush as said in the uk) of course I was not sitting quietly reading, but driving my car in Dupont Circle (the gallery district) with a friend.  If you have ever had the flu and a raging fever, that was it, because not only could I hardly walk, I could hardly stand up!  

It was a usual Washington summer day with the humidity nice and high to give me an instant steam bath as we stepped outside to get me something to eat.  We wandered over to Teaism, where in the bathroom I was stuck on the toilet seat which seemed like an eternity. Coming to with the sound of a gentle knock and the inquiring question of "are you okay" I realized no I wasn't. I splashed my face with water to try and wash the green look I now had on, no good I looked awful. I emerged to see a kind face of concern, mine embarrassed to be such a bother (how English of me).  I noticed a friend's place of work, the Marsha Matekya Gallery was just opposite so we headed over there so I could sit in peace.  I actually ended up in the basement stockroom hugging the floor in the fetus position for half and hour or so. Finally with a chill that washed over me, my first experience with Tamoxifen melted away with me feeling rather exhausted.  I moved from a supine position to sitting, and then, standing!  The rest of my day was actually rather pleasant as my friend and I saw a wonderful exhibition of photographs at the Phillips Collection.   Bret Weston, the son of Edward Weston- see it if you can it is really a treat!

Hello

Hello Everyone My Dear Beloved Friends,

I am writing this blog so you can talk to me whenever you want, and also check in to see what is going on!

These past few days have been hectic with CT scans, bone scans, and blood work. All came out fine! Yey. I just have those little buggers in my lung, but soon they will have to jump ship because I am just going to be too healthy for them to hang on.

Notice "Bug Out Bob" my new friend, some of you remember I can't stand needles, the sight of blood or anything vein related. Well if I give Bob a good squeeze when I get the unmentionable needle his eyes, ears and nose pop out! At least I get to laugh while I am crying.

I will write again soon with more pictures and news. And remember, I love you all, and embrace all the love you can give me.