Who to believe...Who to trust...There are no magic bullets

I went to see the Dr Kaufman the oncologist at Walnut Creek Kaiser yesterday. He spent an hour explaining to me the type of cancer I have. He printed out some studies done and also the National Comprehensive Cancer Network clinical presentation on Mixed mullerian tumor. By the way, I do not have sarcoma (based on Dr Kaufman) as previously printed in my doctors notes. It is Carinosarcoma. Dr says it is much differnt than sarcoma. So all this researching and I was misdirected. He has a CT scan scheduled for weds night.
I cant grind over the time wasted, although there is frustration there.

There are not a lot of people who get this type of cancer. In one of the reports , they gathered info over 6 years with a TOTAL of 31 cases. This was not at one location. They organized the information thru a tumor registry. This is 31 people in the US over a 6 year period , it is not alot to study. I dont want to go into the details (too lengthy),some had surgery, some received chemo, some didnt make it to chemo, overall it has a poor prognosis. This I know, yet each time I hear it, it sets me back and makes my cry.

At this point I WANT the magic bullet-someone must have it.

Yet, I can only seek for myself, there is so much reading/researching/contacting people to do.

Do I listen to this Dr or that Dr or that health gruru? It makes my head spin.

I have learned, if I am not CRYSTAL CLEAR, I make no moves or commitments. That means I AM OFF CHEMO.

I am praying for Gods direction. Please pray along with me.

In the meantime I have found a docor who has a research and advocacy based practice. She does not give any treatments, but will help me to find, receive and refine treatments. She does not replace my physician, but act as a supplementary source. I am interested. I need a knowledgeable partner with a wide spectrim of contacts-doctors,nutrition,etc.

I have plenty of reading to do. I also must have the house clean and show ready each day...realestate agents have called to show the condo. It is difficult for me to get up and get moving in the morning. My left side/hip has kicked into painful action and I have a really hard time moving. I had an xray and it shows arthritis and degeneration-HOWEVER can not rule out cancer because of where it is located. I am scheduled for a bone scan ( to see if there is cancer).

I wish there was a hideway/retreat that I could go to , that would wash away all the breakdowns in my body.

For those of you who have called. I appreciate you caring and wanting to know. I just cant deal with the phone and repeating "the story"'

I have not forgot and dont you forget.

My name is Suzanne Robles and I am a cancer survivor.

At 4:30 pm thursday I am still in my bathrobe, trying to be strong, yet really sad.
I cant write too much right now, because I dont have a grip on what to say. I am a blubering emotional mess.( Don't worry-I'LL be back!)

Yesterday, wednesday was a loooong day.

Tuesday Barry and I drove down south to go to the appointment on weds at the Sarcoma Institue. It was a beautiful drive on hwy 1 and a comfortable hotel.

Briefly, the news is that the doctor (we so trusted) was giving me one half the dose that my body weight should have had (based on the institute). They didnt understand why he did this, yet didnt want to make another doctor wrong. They also said it is out of the question for me to have started chemo with out a ct scan. HOW will anyone know if the chemo is working without the ct base line.
The only way to treat me would be for Kaiser to supply the chemo med and me to travel a few times a month to Santa Monica. The clinical trials are funded by pharmacy companies, however most people have insurance to bill (such as Blue Cross).
The also faxed a reccomendation to the Kaiser oncologist in Walnut Creek .
I am/was so ready to run to this Kaiser Oncologist and have him do the chemo, just the way the sarcoma institute says.
Then I thought...how do i know...how do I trust...I need to regroup.
Today I put calls out to Stanford and UCSF to fine out what they know abou sarcoma.
I called the kaiser pharmacist, Henery, to tell him that I would not need the chemo med. He told me that if I find a clinical trial that kaiser does not offer-KAISER will have to pay for it. No one at kaiser has told me this before. I also found out there is a woman who will research "the case" and tell me what is available. At this point it sounds resonable. Thats all I can say for now.
Knowing ME, I know I take a day down and then I come back. See me Friday

WITH TEARS

Of happiness and joy. Tonight, Monday , I had a healing, with the women I love , support and have history. A friend, Clare who I met when I was a fashion maven at Macy's was the leader of my community healing. All faiths and beliefs united under one community umbrella for the good of Suzanne. For those who dont know, in my past I had a wonderful job training personal shoppers (how to be personal shoppers). And traveling northern california doing "dress for success" seminars for corporations representing macy's. Clare at that time was the personal shopper for men. She has always been involved in womens studies. After all these years she has evolved. Now she makes beautiful jewerly, sold at stores that most of us cant afford. (like $10,000 for a bracelet) Clare has continued her development in womens studies.

She held a healing session for me and I invited some of my loooong time women friends to participate ( 6 plus Clare and myself attended). My daughter's in law sent their wishes and prayers, which Clare read and relayed to the group. Powerful...can you get it? So many families have such hostilities in their relationships, and I only have love, support and respect from my daughter's in law. How lucky I am that my sons were drawn to these women.

My long time friend Michelle ( who did the research for clinical trials) could not attend and sent a wonderful positive note that Clare read.

What a powerful evening it was. To have these women who I feel strongly about telling me their feelings and thoughts about me. Some of these relationships go back over 40 years...as the wise folks say "they showed up for me".

Clare talked about how we develop as women, from babies into puberty into birthing our own babies into...our development as "real" woman...and on and on.

I feel so lucky to have 2 sons who love and respect me, who are close to me. The sons who I gave birth to and I have led them into the life they have. So grand.

I was acknowleged for my intuitive nature, something I have always known, however I thought everyone else had it also.

At some point, I was on a futon in the middle of the room, with each women kneeling around me. Clare brought a dish of pearls and each person selected one, held my hand and read a prayer, or said good things about me. These pearls will be made into a healing bracelet that I will wear all the way thru chemo. A memento/a reminder of the women who love and support me and my healing. Very powerful, giving me the strengh to heal on...to fight on. I must remember, Suzanne must carry the tourch for Suzanne. I MUST be the leader. If I become weak or fall, I do have back up who will carry on for me until I regain my strength. Truth be known, I have discoverd hundreds of people who will HELP me carry on.
This was a pivital night. A time that strengthened me.

Tuesday, Barry and I will drive to Santa monica for a Weds interview with the Sarcoma Institute. We will discuss what they have to offer and if this clinical trial is for me. I will need to make a decision by friday. What will I do, the cliical trial (which I understand is a pill and FDA approved)or continue with chemo in Monterey. I will rely upon my intuitive nature and the higher power for that direction. I need not worry-It will be clear.

I do believe, I will be on stage somewhere saying "my name is Suzanne Robles, and I am a cancer survivor...how this fits or works out I dont know. It will unfold.

Thank you to my friends: Anita (40+ years) Georgianne (5/6 years) Jackie (2 years) Denise (7/8 years) Kate ( 20+ years) MJ (36+ years) and Clare (20+years) This evening meant alot to me. I love all of you.
As Anita said tonight "men may pat your ass, however women will cover your ass!)...Looooove it!
I will not have internet access for a few days. I will keep you posted regarding the trials and my decision. Love, Suzanne =

Pleassse...enough recooperation!

Days at Tahoe were fairly peaceful. I love being surrounded by towering pines with plump blue jays flitting from tree to tree.

Here at beautiful tahoe my siatica/left hip side has flared up. I can hardly walk around the house. I am mostly housebound... just "hanging out". We had a few couples over. Carl/Barry has a knack at entertaining and making folks feel welcomned. Hmmm... We also do not have TV reception. I would be by myself during the day while they played golf, I had OLD videos...I have read and read...I am read out. I am ready to GET OUT back to Dublin.

Running dialog:
I have this running dialog in my head regarding "how Suzanne is changing from this earth shattering/death defiance experience"
Something has happened...an Innerpeace. I feel relaxed, content, centered. It feels to me that I feel the "good stuff" in magnitude and the "bad/negative stuff" feels like it is muffled.
There is an innerpeace that wont let me go to the drama...AAAHHH...relief.

On another note:
Kaiser is now not willing to do blood test, CT scan, epo shots at Dr Rubins pace of request. Dr Rubin has requested a ct scan. I have had 10 chemo treatments. Lets at least get a bench mark to see if this chemo is working.
Kaiser says a CT scan is ordered when chemo is thru, HELLO..They dont know much about the type of cancer I have, they are "trying" this type of chemo. Chemo could go on for years.

With respectful pressing (when I wanted to rip his face off)to my Kaiser doctor, he said OK maybe at the end of Oactober. I am researching where I can get it done at my cost (if doable). I just wont let myself get all worked up about it, oh, the injustice of kaiser...I just dont go there.


I see it in my head when I rest.
Somehow, somewhere, through some navigation...I see myself on a stage saying... "Good morning, I'm Suzanne Robles and I am a cancer survivor. I am excited to ............. thats how it runs and runs in my mind. Looks exciting and fun. Ya never know whats around that corner. Stay tuned. Love, Suzanne

I STILL HAVE MY HAIR...!!!

After 5 days I still do have my hair, although it is pretty thin. I am presentable and no wig needed YET.

I am feeling tired, yet OK. My attitude is upbeat, happy and positive.

I will be off chemo for 2 weeks to let my body heal and get stronger for the next rounds, starting Oct 2. I will be able to get a good nights sleep tonight.

Sat AM Barry and I will go to Incline to recuperate, nothing like the smell of pine trees, lying around and looking at beautiful Lake Tahoe.

Dr Rubin looked into the clinical trial that my friend Michelle found. He talked to Vicki, the person on charge of the sarcoma treatment center. She says next step is to get my blood work done, CT scan, and schedule an appointment with them in Santa Monica-WHOA!!! That means in the next 2 weeks. I need to see them before my 3rd round of chemo.
Dr Rubin says that the CT scan may show us that what we are doing is working (don't fix it if it's not broken I say). So what I am going to do is set the appointment up. Get all the paper work, copy of test, etc in order- BE READY. If the CT scan shows I am improving I can make my decision. I may not need this clinical trial (maybe my mind is STRONGER than I thought-yipee!)
Dr Rubin has seen alot of folks with cancer and he says "you look really good physically, you are clear, bright eyed and I think this chemo is working".

I have been reading about the natural health side of being healthy. It appears that all of us can improve from juicing (my kids say, mom you bought another juicer?-yes I have tried it a few times) Barry and I both have have juicers and use it some times. We also wig out at the set up/clean up. I can see that the force of all the nutrients for so many fruits and vegtables are necessary.

Also I have a friend who sells this neat product to boost your body up. She just went through breast cancer chemo (survivor). The doctor told my friend she has never seen anyone come thru sooo strong and will tell her patients about these products. They are by a company named Oasis. I take metagreens first thing in the AM, then Ageless Essentials (super food) Ageless (energy) and Aloe Gold (dietary supplement) I AM ON IT as they say ( I only take these when off chemo, directed by Dr Rubin) If you are interested about these just e-mail me and I will put you in touch with "my connection". Please dont send me info about all the products you know about, I appreciate what you have to say, however I have researched and this is how I am going.
Friday the 22cd I will go to my looooong time hairdresser (20 years maybe?) and have her trim and shape my wig. Only you guys will know it is a wig! (if I can keep it on my head). It is so right onto my haircolor.

Condo is looking good, they took a few pieces of furniture out to open it up-looks better for showing. Open house Sunday, real estate folks took a look on Thursday and Friday. I hope we get an offer. We priced it low, below others in the complex to sell fast. If it does sell...I will get a company to put a big storage box out front and pack it in. They can put it in a storage center and I will stay with Barry, Joe and Deb and maybe a few of you until we find a place in Walnut Creek.
Things seem to be moving FAST, however I am relaxed and not stressed-cannot afford to have any of that.See a virtual tour and pictures of my condo @ www.BayhillTeam.com
Address if needed 4353 Brannigan Street, Dublin Ca 94568

Thank you Kate, Rita, Michelle, and Deb for leaving a message on my blog, it makes me know people are reading it. Love, Suzanne

Tuesday's report
Mondays treatmenr went fine. EXCEPT Kaiser did
not give me all the medicine I needed. Dr Rubins office got the medicine from another oncologist. The office worked out all the details with Kaiser. As of today-no worries.
I talked with Dr Rubin about how smooth everything is going. At the end of these 5 days I will have a series of test performned by Kaiser. That will tell us if this type of treatment is working.
On another note. I had my friend, MIchelle research clinical tries avaiable for my type of canter. She found one that looked prommising in Santa Montica. Dr Rubin got more information of the program and how it works. He says it looks really good and asked me if I wanted him to contact the doctor directly. YES! I said. I would go for the evualation appointment and that did not mean I would have to do it. This is only research.
I am also looking into a natural way with out chemo.
All of this is alot to read, digest, think about and choose what is best for me...doing it my way!
Late last night around 2am I got really really sick. I dont know if it was the food or the chemo. Barry did not get sick. But this AM I was feeling OK. Tonight will be the test.
Barry had to leave to attend some important meeting and I was lucky to get my friend Georgianne to come pick me up and fill in for him.
We also went shopping for a wig and we were able to find one. I am relieved to know I have hair back up.
My CA125 went from 170 to 35 wich is great. That only tells me that the tumors arent growing, that does not mean the cancer is not growing.
I am told I will always have cancer, I will always have to watch it and manager it.

ALSO, put my condo up for sale , this weekend will be open house. This company brought in a "stager" monday to review and wensday she will move things around. YIKES! it is going so fast. The housing market is falling and this is the time to get out.Love Suzanne

Hair by Hair

Well...it has started. My hair is falling out.UGH! These last few days when I touch my hair a few strands come out. Now this is EVERY TIME I touch it. I was AFRAID to wash my hair this AM...would the drain be plugged WITH MY HAIR?

I thought loosing my hair would be no big deal. Right now it feels like a big deal. Oh, I have already deceided I will shave my head. I didnt think it would happen so soon.

Saturday I went wig shopping. WARNING: do not do this alone. While everyone was helpful, it is hard to see yourself. You need to have someone you trust, who knows you well. Who will say-no way-get it off. There were people saying "Honey, that looks great" way too many times. AND when I look in the mirror, I think who is that person-it is so not me.I see WIG WIG WIG. I hate it when you look at someone and it screams wig, just like when a man wears a toupee.
I see that darker hair looks more realistic( I want my wig to look close to my natural color). The wigs for me were either too blond, or too red. Beside all the trying on and looking in the mirror, there is all that stuff going on in my head. I still have some deniel going on . Sometimes I think "CANCER I have cancer?" It is a real balancing act to keep THE FEAR out of my head.

Sooo, I didnt buy/order a wig I thought I needed to think about it. Yes, and here I am Sunday AM worried that I will only have a few strings of hair(and NO WIG to save me). Barry and I are going to a brunch at a friends house with about 20 people attending . I want to continue to look good thru this journey. Hell, why cant I look GREAT? Thats what I want to do.
The cost of a wig? Whoa...the less expensive ones , such a Rachel Welch etc are about $50 and under-however the hair in the front is funky and they really dont look that good. Most of the ones that look good are around $250. The real hair wigs are $800.
The Cancer Center has free wigs, used wigs etc. Last week a few of us from the Ovarian Cancer support group went to try on these wigs. There was nothing there for me that was right. Most of them looked totally forced.
Am I too vain? Probably...I like taking care of myself and doing all that I can do to look my best.
I am thinking after the brunch Barry and I can find a wig store open today (small chance). I think he could help me. Monday AM I leave for my 5 days of chemo and I could easily be bald at the end of the week. This is a rollar coaster ride for me right now. Love, Suzanne

Preparing for next week-5 days of chemo

Hi everyone. It has taken me a few days to get my picture moved from my posting to my profile!
Next monday i go back to Monterey for 5 straight days of chemo. Each treatment takes about 3 hours, I am gearing up for it! These last days have been quite enjoyable along with my naps.
I am taking advantage of the pool in my complex. Each day I get into that pool and do my exersice. My body seems to take it better in the water. I am rebuilding myself slowly.
Today Kaiser pharmacy told that the chemo I am receiving is 1/2 the power they would have used (IF they would have suggested this , instead of suggesting a conservitive approach first). I will ask Dr Rubin ( Monterey) about this. I also have been doing quite a bit of reading of other alternitive approaches. I have my friend Michele researching "clinical trials". There is one in Santa Monica that may be hopeful.
At this point I have to research EVERYTHING. There are many treatment and many approaches to be considered. No one treatment is for everyone.
I went to my support group today and they gave me information about other doctors who can be a source of information for other ways to do this. People survive without chemo, its hard to accept because that is western medicine and that is what we know. I will keep you posted. Love, Suzanne

False Alarm

Friday I saw Dr Ewing ( He did my surgery) because I had this burning, stabbing knife pain in my stomach area. He gave me a complete exam and said I am doing very well. He pressed on "THE SPOT" of pain and his only thought was that I had pulled something. He said "you are still healing". While I grab a pillow when I sneeze or laugh, there some moments when it takes me by suprise. I could have pulled a deep muscle. Time will tell.

He said it is really common to knee jerk after going thru my cancer experience. Every little pain etc you think it is cancer and you want to react right away. He says it goes away in a few years.

YEARS, he said years?? I thought I was to get my affairs in order and fight for my life. That felt kinda good. I have tried to "read" in his eyes what he was thinking my time was based on his experience. Doctors are VERY careful about telling you a time-they only imply in a very general way.

More evidence for me that I need to relax more, keep my mind on the positive track. I have read plenty about people sent home "terminal" and 10 years later they are living a complete life.

When I was with Mary I told her that if everyone has died from this desease in a short time, some one someday has to be the one to live. AND that will be ME! (she probably thinks I am over the top!). Think about it...it is true, SOMEONE has to be the first. Why not me? Love Suzanne

Thursday was a beautiful AND a devestating day...

The beautiful part.
I met with my Barb Barstead and her daughter Kerry for lunch. Barb and I have known each other since high school. 29 or so years ago Barb and I went to Paris with a group of ladies. We have many crystal clear memories and hardy belly laughs from that trip. It is such a pleasure to RELAX and spend quality time with a friend who has such a history role in my life. It was wonderful!

Devestation and THE TEST

Prepare for the worst-plan for the best

I spent one and a half hours with Mary, the oncology nurse in Pleasanton. I wanted the truth. I wanted honesty. I got that, it just set be back a bit.

I sat as she read over my patholgy report and the notes from surgery. She put the papers down, turned her face directly to mine and with clear eye contact says "I want to be honest with you ( yes, yes, that is what I want). " Your situation is serious, much more serious than I thought from our other conversations. This is a very agressive cancer."
While I knew this, the frankness and the ability to ask all questions really clarified some things for me.
I am so happy I met Mary, this is some one who will be on my team with knowledge that I need. I must have the knowledge to make good decisions about my health.

Mary went line by line of my surgery report and told be in laymans terms what they did and why they did it.
I knew the doctors did'nt get all the cancer and it is still in my colen an some scatterings. I now know it is sprinkled over my diaphram. This cannot be taken out, it must be treated with chemo to get rid of it.
My pathology reports that I have a mixed mullerium tumor. What that means is I have more than one type of cancer. Sarcoma being the most aggressive. She showed me on a ruler how big the tumor was, bigger than any babys head. Or go to the produce department and find a squash that is smaller at the top and larger at the bottom. Bottom line it was BIG !

We talked about how great I look and how good I feel, yet, there are waves of gut wrenching tears. These take over me for max 60 secounds, the tears come from the deepest part of me.
She tells me it is common and it is part of grieving.

She also suggested and recommended that after chemo the doctor may want to take a secound look. That means surgery. I lost it there, my recovery was so difficult, I cant see myself doing that again. Then again, the surgery probably wont be so extreme and the recovery could be easier.
She STRESSED...you must only have JOY in your life. If you wanted to travel do it now. What ever it is do not wait. You are feeling good now, but later on you wont be. This is going to be a difficult battle.
It made me realize that I was thinking, ok about 6 months of chemo and then Ill start doing things I want to do. She stressed over and over-do it now.

I started thinking about what is it I want to do ,if I knew, I had only 6 months to live.
At this point, I am thinking about selling my condo, paying off all bills, cashing out investments and travel to all the places I have dreamed of (when my health allows it). I want to spend a week in Hawaii with Barry, Joe, Deb, Rod, Lara and Jake.
Barry will rent a house in Walnut Creek and we will be together there. We will do all the things I dreamed about.
AND THEN...what if 2 years pass and I am still here in rare form enjoying my work. Oh well, yippee, I have no regrets and nothing to worry about. Barry is fianancially stable. What ever I want to do he is behind me (and a few hundred of you friends/supporters)
I need to grab the gusto NOW and not hold back.

New pain
For the last week I have had a burning, stabbing pain located 3 inch's above and 3 inch's to the right of my belly button . I though maybe I pulled a muscle etc. It is always there.
Mary says "thats in your stomach" it could be nerve endings healing or the cancer could have spread. See your doctor. I have an appointment today at 3:15 Oakland Kaiser with Dr Ewening, who did my surgery.

Cinical trials
We went on line and looked at a variety of clinical trials being done that would be appropiate to my condition. It appears there may be quite a few to sort thru that deal with my type of cancer. It will take quite a bit of research to determine which ones are feasable for me. After finding the ones who would take me, she suggested I ask Dr Rubin (Monterey) what he knows or thinks about these trials. They all have different qualifications needed. One of the qualifications that kept coming up was no chemo started. I saw a few that said to qualify you must have life expectancy of 12 weeks. Yikes,my eyes doubled in size when I saw that. Mary say "these are a last ditch effert to live".

What do I know-what did I learn?
While thursday set me back a bit... I must view it as a test. Am I going to let new information stop me from fighting for my life, from carry that TOURCH for Suzanne. NO and NO and NO.
While the new information may have set me for a spin, it is not going to stop me from being the warrior that I am. Love, Suzanne