because of the way that peeps have to post I have decided to create a different site... Please go to: http://www.caringbridge.org/visit/robifleming

Thanks .. Robi

Its snowing!!! So pretty but also soooooooooo cold...Still got the crud but now its in my nose so maybe that means its getting better...lets all hope...We are supposed to be getting a new load of wood on Tuesday and then our friends are cutting up their beef here and we are getting a 1/4 of that so that will be nice...dont know where they are going to do it but guess Mike will figure out something...Poor spitty, if I was magic I would invent him a house to live in during the winter but they say even tho they have houses they prefer outside but I went to give him his grain and he was a big snowman hehehe.. Have a great day!!!

Well its Friday and the cold/cough is still hanging on.. Its weird usually you feel worse at night but at about 8 I feel a little better and do the happy dance and then in the morning the "unhappy" dance :( I did call the dr yesterday and they said unless I have a fever or coughing up Mr. green (you know the guy on tv) I just have to wait it out. I had such a horrible migraine last nite I swear I was inches to trying to rip my head off..I havent had any coffee for a couple of days wonder if that did it.. but am drinking some now so we will see.. I want to be better for Tuesday, Mike has his Christmas party at work and should be fun at least I dont have to cook on that day OMG what am I saying I havent cooked since I got home.. Thank you God for bringing Mike back into my life :)...anyway have a great day!!!

Well I caught the Oregon Coast croup or something I have bronchitis like coughing, you know that wayyyyyyyy down deep stuff and heaven forbid you have to go to br b4 coughing...I felt like my head was going to blow off yesterday. The weather here is a nice warm 12 but is supposed to warm up to 31. I was so anxious to get home to see Mike and decorate for Christmas but feel so lousy cant do any of it.. The bathroom is coming together only a couple of walls to go some plumbing and painting..Its going to be wall to wall tub but I guess its no different than peeps who have bedrooms with wall to wall bed..Hope everyone has a great day and I hope to get over this stuff soon :)

Feeling better today not so much pain, lymphodema is getting me today but still here and kicking so I guess thats what I need to concentrate on.. I miss home but having a nice visit with mom and dad, miss sis and kids already seems like we werent even there :( .......going to play pinochle with mom and grandmother today so will be fun to see everyone...Sunny today was raining here earlier but seems to have stopped now, hope the pass is good Sun so mom and dad can take me back over... I hope everyone has the christmas spirit, look for the positive and HAVE A GREAT DAY!!

Had a great time with Shirl and the kids.. too short but def a great time.. Wow the weather has been crazy..Hurricane like winds in Tillamook hopefully fam down there is doing ok and didnt lose their roof. We had a nice trip home was sooooo foggy you couldnt see the car in front of you which is pretty scary especially if that car is a semi..Stayed overnite in Eureka at a "seedy" motel lol oh well it was a good price...Got home went straight to the dr to get results from my ct scan.. He said I was getting way too much radiation from having ct's 4x a year and that they were not sure on whether my tumor was really a tumor or just a hole in my liver from my first biopsy so I have to have 3 more tests in Feb.. I dont remember what he called the first one but basically its taking blood, treating the blood with some sort of radiation and then injecting the blood back into me, doing an ultrasound and chest xray. If the spot fills up with blood this means that I can go off of chemo ..if not I have to stay on.. He didnt say whether or not he thought the Xeloda was working but took 5 vials of blood. today is a lousy day as far as feeling very good, probably just winding down from starting chemo Sunday traveling 350 miles on Monday and then traveling 12 hours 2 ways....its hell to get old lol....anyway hope everyone is having a great day!!

Its almost like summer over here..my sis has a beautiful yard filled with more Robins than I have ever seen before...Its so great to see her..the kids have grown so much..Too funny last nite I was going to have some hot choc and Ty said we dont take anything that is not clear liquid out of the kitchen and we dont usually move that blanket ..he def let me know the rules!!! It makes you realize how much you miss everyone and we only have 4 days here...But hopefully I am going to be able to just enjoy and do some stuff was super tired yesterday but hopefully today will be better........Have a great day!!!

Made it to Sis' house was soooooooo good to see her and the kids.. OMG my 15 year old nephew is 6'5 and I am 4'11 lol what a shock I havent seen him in so long...The weather was really nice for the trip we all took turns driving and had a good time.. Will be here till Monday :( and then off to Oregon again... Chemo starts again on Sunday...Have a great day!!

Up bright and early.. well maybe not so bright but def early..Man its hard to sleep when you are excited to go somewhere topped with not being able to sleep anyway lol...We are headed out for california today and I am sooooooo looking forward to seeing my sis (shirl) and kids...We are going to drive till dark and where ever we are at that time going to stop for the nite get a fresh start and be at her house some time tom morning...as far as ct scan feeling ok got the banana smoothie runs but thats normal lol....you would think that after this long they would make a contrast out of margaritas or something hehehe... have a great day!!!! ( oh btw Shirl..chemo is coming to your house..sb there fedex thurs...love ya))

Well I made it, wasnt a bad trip just long and good hiway all the way cept started raining hard when we got to Eugene.. Had quite a dif bunch of peeps on the bus with me lol .. When I left Burns the kid sitting next to me (Indian) was coming back from Alcohol rehab.. suprised me was only 21 days but he said he had to do it to get out of jail....He said he had an anger problem and got into a fight and thats why he was in jail... I asked him if he gets angry when he is sober and he said not as much and I thought oh great I hope he is happy now heheh then on the way from Bend to Eugene right behind me was a guy who kept repeating everything everyone said.. OMG lol I suppose all sorts of peeps are going somewhere... So had my ct scan today and the weirdest thing happend,, you know they have to give you contra (die) and it usually makes you hot all over well today was really weird because even the palms of my hands felt like they were on fire.. he said since I get this at least 4 times a year its gonna act weird sometimes plus might have something to do with my chemo..anyway we are on our way early tomorrow to head for calif....Have a great day (eve)!!!

well its Monday and I think I am all packed for the trip. Its soooooooooo cold I cant think yet..lol.. Bus leaves at 11 and I think I get there at 7:30. Hope we dont hit much snow on the pass or else I will be a basket case when I get to the coast. Ct scans are scheduled for tomorrow morning.. wish me luck...Have a great day!!

what a lousy nite of sleeplessness!!! Mike was snoring, I hate being a lite sleeper with insomnia...I did watch a show that was older about this woman names Gerry Rogers with BC..It really made me feel better which sounds awful to see someone else be so scared and crying but she said alot of the same things that I say...I am on my off week of chemo and sometimes I really question whether this is doing any good or worth it or what, I guess its selfish to question it when I say I am going to do everything I can and I am truly thankful for all the support in my life, maybe its just that I am tired but sometimes I am literally "tired" of it all...oh well hopefully tomorrow will be a better day.. I hope you have a great day!!

Has anyone watched that movie with Nicholas Cage "National Treasure" its actually pretty good. We watched it last nite..Getting ready for trip.. Getting really excited to see everyone especially Calif peeps but sure not looking forward to the traveling part.. I love trips if I can fly everywhere lol...Got down to about 13 last nite.. its only 28 now... at least got smarter and left the faucet dripping so its not frozen today...Still doing good as far as the hand/foot syndrome on the Xeloda, hands are really numb but so far so sores or blisters except around finger nails and a couple of problem spots on bottom of feet but not as bad as I expected...My friend gave me some great socks that has gel on sole of them, it really makes your feet soft and since I dont have bathtub to soak it really helps...Have a great day!!!!

I hope everyone had a great turkey day and enjoyed it with lots of family and friends.. Nothing is more special than to be with your family on the holidays.. One of my favorite Christmas' I can remember was when I lived in Little Rock and my sissy and her kids came for the holiday.. The youngest one so wanted snow and guess what, we had more than we could handle was a great time...We had a great dinner tonite at the casino I was soooooo full...then came home and watched a movie.. the postman.. kinda of a slow confusing start but not a bad movie (kevin costner) I think this TMJ is gonna get me with the jaw locking up and earaches...before the ca ever does :( ...as you can probably guess I am not sleeping tonite as its after midnite already.. We are thinking of getting a wood stove for the kitchen since its so cold in there and we have friends who have an extra one.. Thank goodness for friends huh? Too bad I couldnt bottle these hot flashes they are killers... anyway have a great nite :) you are probably sleeping lucky dogs...

Wow its sure cold here...Trying to get the fire started when you feel like crap is not fun and then go out into the kitchen and its like minus 100 lol...I am looking forward to going to the coast and seeing family but sure not looking forward to the bus ride.. Its not to bad I guess better than having to catch a flight somewhere.. Thanksgiving tomorrow, I dont have to cook we are going out to the casino with some friends and hopefully have a nice meal. I hope everyone has a great thanksgiving.. Seems like I have been on this Xeloda forever already and its only half done.. Oh well I guess you gotta do what you gotta do huh? I do have alot to be thankful for so I should just concentrate on that and not the negative... sometimes easier said than done but I have great friends, wonderful family and a loving man and a bathroom down the road... wahoooooooooooo Have a great day!!!

Back from Bend and we had a really nice time. Even went to Redmond and saw the biggest WalMart I have ever seen. Its like a mall...We went back and forth at Lowes trying to find out what to do with the faucets for the garden tub.... It seems its not as easy as you think or as cheap... OMG everything is sooooooooo expensive...We finally decided on what we wanted and could afford and got out of their relativly cheap. Wal Mart was something else but by this time after walking thur Lowes for over an hour and half my back was hurting like crazy and I couldnt really enjoy Wm..We headed for home when I heard an employee over the radio saying it was snowing like crazy out there...We did hit some snow on the way home nothing on the road but by the time I went to bed (which was wayyyyyyy early) we had about an inch here at home...Its that time of year again...any way all in all was a nice weekend even had lunch at KFC...we dont have one here in Burns....have a great day!

well we are getting ready to go to Bend for a couple of days. I am so looing forward to getting my bathroom done and thanks to the wish foundation I can actually see the end of my journey. We are both excited about just spending some time, eating a nice dinner maybe even getting a bottle of wine... This is before pic of the bathroom...Can you imagine after with the garden tub and real walls and everything...Never take advantage of your shower lol... Have a great day!!!

Good morning everyone.. its 4:30 and a rotten nite again. I think I need to invent a new sleep medicine..anyone have any ideas? I have tried ambien,lunesta, velarian root, tylenol pm and a variety of stuff...grrrrrrrrr Have a great day!

Sharing

I wrote this a couple of years ago after I received a special gift from my brother.. Thought I might share it with you...

A Precious Gift

Brothers and sisters are a gift to each other from their parents. Our parents think they are giving a gift to themselves but in time we all know the true gift is for the entire family.

Who would know that in 1997 my youngest brother would start a project that would later become the sweetest gift he could ever give me. Due to what ever reasons he may have had a the time, he discontinued to cut his hair and started growing the most beautiful curly , soft pony tail you could ever behold or feel, only to find out one day that due to inflammatory breast cancer his sister would one day have no hair.

During a visit from their mother, she said she had a present from Tim. She went into the house and came out with this paper towel, as I opened it the tears came as inside was the most precious gift of unconditional love. Inside was "the" ponytail of 7 years.

During a time when worry, love and caring for someone far away seems all you can can do he thought of the perfect gift to send to her across the miles.

Thank you my sweet brother, a part of you will always be with me and when it is my time to go to Heaven, I hope this precious gift makes it way back to you so a part of me will always be with you. I love you

xoxoxox 11-04

I printed out what I had written and along with a picture of Tim and his family put the pony tail in a frame and it stays near and dear to my heart..

My family is the most important thing to me in this life and I will continue to fight this fight for them, I do feel like giving up at times but then I think about my sister who I love so deeply and who has her own trials and tribulations being a single mom but always has time to listen to me if I am having a bad or good day.. I love you with all my heart Shirl...My mom and dad who have supported me through the good and bad, have gone to every dr appt, ct scan that they could make, have cried the tears with me when the news wasnt so good...I hope that I show them each and every day how special they all are to me....

Have a great day!!

Well its 6:30 am and another night of sleeping 2 hours on and off...I wonder what a good nites sleep feels like anymore its been so long since I had one. I also wonder how come people think that cancer victims without insurance arent supposed to get well. Just for grins yesterday I contacted an online chat with Cancer Centers of America. I have had a beef with them since I lost a very good friend to IBC in 2003. She didnt have insurance and we tried everything and found out that although Cancers Centers of America on tv sound wonderful, they will not even talk to you if you dont have insurance. I was very fortunate to have insurance and I thank God that I did because I didnt have insurance for years b4 I was dx. I guess if you dont have insurance you are not worth saving...

Today is the middle of week 1 of Cycle 3 of my Xeloda. So far I have been fortunate with the side effects. The typical loose stools and tired but as far as the hand/foot syndrome I have had minimal side effects. I guess like any other cancer patient if you dont have side effects you dont feel its working....but who wants them???

I go for ct scans on the 27th, then my parents and I are off to california to see my beloved sister who I miss so very much.. In a perfect world we would all live on the same block:)))

I found a wonderful organization that is called Making Memories Breast Cancer Foundation, they are doing wonderful things for us...I filled out all the forms and had dr. sign his and they granted my wish and sent me some funds and we are on our way this weekend to go bathroom shopping. Right now I go to friends houses to take a bath (cant have a better friend than that) but soon I will have my very own bathtub. Do you realize how much we take for granted.. lol There is so many blessings in the little things we have, sometimes we forget until we dont have them...I know I do...anyone out there with BC check out their site ..See links at right... have a great day!

After reading many blog sites I finally decided to bite the bullet and make one. It seems to make people feel better and my family and friends can actually see how I am doing with out having to call me.

As many of you know my history, it will probably be a little boring to start with but I will try to keep this updated as often as I feel like typing. I have started this first page with a little of my history. It seems so scary to me that my oncologist is 350 miles away and yet I am so happy to be where I am.

I moved to Eastern Oregon to be with a long time ago love and we are doing great emotionally but sometimes I wonder will he be able to handle the long run of going thru all of the mood swings and just plain bitch that I can become. Each day he suprises me and I think that this time I got it right in the love dept because each nite as I lay down and know I will not sleep I look over at him and thank God that he is in my life.. What can be a better feeling then that...

My name is Robi Fleming. I have Inflammatory Breast Cancer stage IV. I was dx on May 10th 2002. I was initially dx with mastitis as is commonly done with IBC. I found my lump one Saturday in April of 2002. Went to the doctor and he thought I had a cyst which he tried to aspirate. To his surprise and my pain we discovered it wasn't a cyst. He then sent me to a breast surgeon who diagnosed me with mastitis and put me on antibiotics. He also did what I consider is the one thing that has saved my life so far, he ordered a needle biopsy. On May 10th, (3 days before my 46th birthday) I received the news that I had breast cancer in both sides. I started chemo that very day. Their goal was to decrease the size of the tumor before surgery. My tumor had grown in one month from the size of a golf ball to a tennis ball. I had 6 chemo treatments and then a double mastectomy on Aug 28th. Chemo was successful and it had shrank my tumor. I had the mastectomy with what I thought was an easy time. Actually the surgery has been the easiest time throughout this whole treatment time. With IBC you can not have reconstruction which needless to say I was very disappointed but I was alive and healthy I thought so ok. I got very sick about one month following surgery and they realized I had staph infection in my L side. Spent 2 horrible weeks in the hospital, had another surgery and came home with a sucking machine to try to heal the new incision up faster. Spent a month on that, which I called my 5 foot life because youHad to wear it 23 hours a day and it only had a 5 foot cord. I continuedChemo, had Taxol, Taxitere, Gemzar and steroids etc. I have lost my hair 4 times but hey its always a new me :) In April of 2003 I had good news. I was in remission and I thought wow I can get back with my life. Back to work full time and feeling a little tired but not bad. In June of 2004 I woke up with a small stomach ache, kind of like when you have run to fast to hard. By the end of the day I couldn't even bend over to pick up a paper clip. I went to the Dr and he ordered a CT scan. When the results were back he said that he had consulted my oncologist and I thought hmmm for a stomach ache? Well it wasn't a stomach ache, the IBC had come back to cover 75% of my liver and I started chemo again. I had neutropenia and was very sick. At this time I was living in Little Rock and my family was all on the West Coast. My oncologist (Dr. Brad Baltz) called my mom and said that she needed to bring me home. I was fortunate to find another good Dr. Here in Oregon. Dr. Brett Cook resumed my chemo and we found that it had moved to both of my lungs. More chemo, more hair loss, more fatigue but I have a great support group in family, spirit and friends. I got Neutropenia again and decided to take a break. I decided to quit chemo and try to have a normal life without feeling so sick and tired..I resumed a romance with someone that was in my life 25 years ago (when I had boobs and everything) We decided that together was worth a shot. We have been together ever since. I found out in Sept (2007) that my cancer is back in my liver and I have started chemo again..have a great day!