Monday 9 November 2009

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!

Saturday 24 October 2009

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 :)

Wednesday 7 October 2009

Radiation Day



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

Friday 11 September 2009

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!

Friday 4 September 2009

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.

Sunday 26 July 2009

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

Thursday 14 May 2009

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.

Tuesday 24 March 2009

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!