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May 25 WOW Life happensI didn't realize how long it has been since I've blogged. I've had alot of things going on.
The latest news is that the Avistan, Carboplatin, Gemzar is not working anymore. Seems like treatments work for the first 2 or 3 cycles then stop. I'm glad my Oncologist does CT scans after every 2 cycles.
I will be doing a consultation at KU Med with one of the oncologists there. My Onc. at Topeka recomended this. If I decide to go with the KU med treatment I would be able to do my treatments at Topeka so that would save on some gas.
The other thing the CT scan showed was something with my gall bladder. I had an ultrasound of my gallbladder and everthing else in my stomach. It showed gall stones. When I rolled on my side while he was doing the scan I could actually see the stones moving. Anyway since I was between chemos they scheduled me for surgery Thursday. I'm glad I had the ultrasound because i wouldnt have know why I was in so much pain. I'm not a whiner but by Saturday night I couldn't hardly stand it. Got in touch with the surgeon and he said take the dilaudid that I have and if it is really bad go ahead and take the lortab. I ended up having the surgery on Tuesday instead of Thursday. They were able to do it laperscopicaly so I have 3 spots on my belly. The spot on my right side has been really bothering me today. I go back for my followup appointment on Tuesday so I'll try and get back on here and update what they say.
My appointment in Kansas City is on Thursday. I'll try and update in a more timely manner what is going on.
Ok time to get off here.
Cindy February 25 Still LowDid bloodwork again today.
Nurse called me and my platelets are at 23,000 still low. I have to go back Wednesday and get them checked again. If they are still low chemo will be postponed till next week. I'm praying they are back up where they need to be so I don't have to delay things.
Man I wish this weather would decide what it is going to do. It was about 50 when I left town at 10:30 and when I got back into town at 3 it was down to 40ish. Now it looks like its snowing or something and the wind is blowing. I'm ready for summer or at least spring weather. Give me some warmth and sunshine.
Ok well will update after bloodwork on Wednesday.
Cindy February 22 UGH another pothole in the roadI got a call late morning from my oncs nurse. My platelets were down to 11,000 they want them to be at least 12,000. I had to go in for another CBC bloodwork. She told me if they were not back up then I'd have to go to the hospital for a platelet transfusion. Well they were only 5,000 so off we went to the hospital. Glad its only just around the corner from the cancer center. Was instructed to be careful and not fall or bump into anything etc on my way there. Took them about 3 hours to get it all ready. OH BOY sitting in a hospital bed for that long was not fun. They did bloodwork yesterday, then today at the cancer center, again when I got to the hospital and then again before I left. Because my platelets were so low I now have 4 bruises on my arm from all the needle sticks. I also got a shot of procrit (SP) in my abdomanal area and have a bruise from that. They accessed my port for the transfusion and I have a bruise from the tape and also the spot where they put the needle in is a little swollen and will probably be bruised as well. LOL I look like i've been in a battle. Was joking with the guy who did the blood draws and told him I looked like a druggie. He made a great funny and said real junkies have port a caths. LOL. Poor guy had to put up with me like 3 or 4 times today for different reasons. I think I made his day fun. I'm still trying to keep my sense of humor through all this. It is hard at times but I work at it. Anyway when I left the platelets were up to 48,000. I have to go Monday for bloodwork again and will let you know how it turns out. Time for me to get to bed. I'm really tired, it's been a long day, {{{{{HUGS}}}}}} and prayers, Cindy February 17 GemzarI had the Gemzar for the 2nd time on Friday and I'm feeling well. I'm a little tired, well not exactly tired but I feel weak. I'm not sleeping well so I am tired but only because of lack of sleep. But other than that things are going ok with the new chemo stuff. I will get a nuelasta shot tomorrow because from my bloodwork on Friday before the Gemzar my bloodcounts were not what the Onc wants them to be. The Nuelasta will bump up the white blood cell counts and that is awsome. I will probably have more energy and not feel as weak as I do now.
Well just wanted to do a quick update.
Will update more later,
Cindy
Hugs to all my supporters and a
SPECIAL THANK YOU TO MY "FRIEND" IF YOU ARE READING THIS. I REALLY APPRECIATE WHAT YOU HAVE DONE FOR ME. YOU DONT KNOW HOW MUCH IT HELPS. THANKS THANKS THANKS!!!!! February 08 ChemoI had the new chemo today. So far I'm doing ok. I'm tired but that is normal after chemo. They didn't give me as much benydryl as normal cause I'm not on the epirubicin. During the last treatments they gave me lots of benydryl and I would get the jumpy jitters. I couldn't sit still, then I'd fall asleep. I'm not sure if I will do the consult with KU my oncologist is in constant contact with the doctor there and he suggested the same drugs as she had chosen. If these don't work there are other combinations of drugs I can take.
Well it's about sleepy time,
I'll update later,
Cindy February 07 What a DayOk I had my Oncologist appointment today. I was suppose to have Chemo as well. I had CT scans yesterday and they had the results for the appointment. Dr. D my oncologist reviewed them and the report was not good. The lung nodule is stable. Has not changed. The liver is another story. Even with the chemo I was on they have grown in size. We are going to change the meds. I am waiting on a call from the onc nurse about a consult 2nd opinion at KU in Kansas City. My onc has spoken with them but I would like them to see all my paperwork and determine if they would still do the same thing as Dr. D is recomending. We are also talking about some clinical trials that I might qualify for. At this point I will try anything. The new chemo drugs she wants to give me are Carboplatin, Gemcitabine, and Avastin. This is not a typical mix but she thinks it would be the best. I'll let you know.
On a good note. Mom and I went to Olive Garden for their soup, salad, and breadstick lunch special. I was craving salad and their salad is so good and its only 5.95. When we were finished and waiting for our check the waitress came over and said someone had taken care of it for us and to tell us Happy Valentines Day. We have no idea who it was but both of us were ready to cry. It was such a nice gesture and I do wish I knew who it was.
Ok well I'm tired it's been a long stressful day. I'll update and give dates when I find out more.
Cindy
January 22 LONG LONG TIMEWow I didn't realize it had been so long since I updated my blog.
I'm doing well. I had my 4th Chemo treatment last Thursday. My hair is almost gone and I figure by about Saturday or Sunday the rest will start falling out. I'll take some new pics and post them. The ones on here are from my last chemo. I'll really try and do better at updating. I should have a CT scan or hopefully a PET scan again before my next treatment which is February 7th. I'll update and let you know if there are any changes to the mets (metastatic disease, or spreading of the breast cancer). Keep those prayers coming. Last time the lung mets had shrunk but the liver mets hadn't shown any signs of change. The Onc thought it might be because my liver is scared and that would show up the same on a CT scan. I'm hoping for a PET scan because they are better. At my appt before Chemo Dr. D, my Onc, talked about some new treatment that isnt even out yet for liver mets but it would mean traveling to Maryland or somewhere like that I think she said and I just don't see how I could do that. Someone did tell me that if you get into a study of new meds the med company would pay expenses. That would be nice and if there is a possiblity of the mets going away then I'm all for it.
I'm working again. Not as much as I was before but it still feels good. I've subbed a couple of times and have a couple of sub jobs lined up for the future. I'm back at Dillons. Working one day a week in the fuel center. Makes you feel like a monkey in a box out there cause you are all by yourself, LOL. Watch me I might do tricks. I've also finished the training I need to start at working at Big Lakes Developmental Center. I'll be working at a house everyother weekend. I need to talk with the other gal and work out a schedule for my work there so it is around the chemo because when I have chemo on Thursdays I feel like crud till around Sunday and being around people is the last thing I want to do.
I'm still working on getting all my pictures scanned onto the computer. Eventually I'll have files for Chris, Ben, Megan and myself along with mixed family pics. When I do I'll post some of them here so you can see the kids through the years. It's been a walk down memory lane looking at all the photos. I have a program on my computer where I can make movies set to music and I want to make a movie of each of the kids starting from baby till now. It's harder than you would think, there are some pics that I cannot remember what ages the kids were. (Chemo brain doesn't help much either).
I made an awsome movie for my friends with all the pics I had of them and set it to a great song. It turned out well and I think a couple of them actually got teary eyed over it. LOL Need to make more but need more music on the puter first. Hard to find the right songs for each group. I'll find a program where i can download songs for free then I'll be up and ready to make those special movies of my memories through the years.
I'm trying to stay as busy and active as possible. We go to dance lessons on Tuesday nights, line dancing and some couples dances but couples is hard cause there are never enough men to have everyone coupled up. It's still fun and good exercise. I get tired out easy and usually only dance to one or two songs. Just depends on how I'm feeling. I still go to the legion and other place with mom and Wava for the singles dances. Ben gets drug along most of the time. They are alot of fun as well. I've missed a few because of Chemo or just because I was to tired to go.
OK well I've babbled enough for now.
Update more later,
Surviving,
Cindy December 23 Feeling GoodMERRY CHRISTMAS EVERYONE,
Wow I cannot believe its almost Christmas. Ben and I went over to Kevin and Susan's last night for Christmas dinner. Was nice being with friends and just talking and goofing off. We exchanged a few gifts then watched a movie. The Simpsons. It was ok even though I'm not a big Simpson's fan.
Not sure what we are doing for Christmas day, will probably get together with Mom, Chris and Hope.
Mom is going to have a family dinner New Years Day because everyone will be here. Jason is getting married on Saturday the 29th. Not sure if I will go to the wedding. I have chemo again on December 28th so it all depends on how I feel.
Well it's official my hair is falling out again. My hair that was about an inch long and filling in nicely is now really short and thinning again. I rub my hands through it and they come out with hair on them. It's really bad when I take a shower and wash it. I keep a bottle of drano handy just in case I plug up the shower.
Well time to get ready for bed.
Merry Christmas,
Cindy December 14 Gettin' it doneHey,
Wow it's been awhile since I posted.
My 2nd round of chemo went ok. I was tired for a couple days and took my Compazine for nausea regularly so was ok. I got the Nuelasta shot on Monday. Glad I only had to go to Wamego to get it. I was home before the ice hit.
We lost power around 11 Monday evening. I stayed at home with no heat tuesday night. Wednesday I decided to bail and went to Wamego. Stayed a couple days with my old neighbors. Was nice to see them. Power came back about 2 am Friday morning so I decided to come home. There was more melting of the ice in Wamego than in Riley. I'll try and upload some pics of our area when I get them downloaded from the camera.
I have scans again on Wednesday to see if the Chemo is changing the tumors in my liver and lungs then I will have chemo again on December 28th. At least I get to have Christmas without chemo and should be feeling OK for New Years.
As of now I have no plans for New Years, will probably stay home where it is safe from those who think they can go out and drink then drive home.
OK well there is a snow storm moving in so we are praying that we dont loose power again. Snow on top of the ice on top of the already weak trees sounds like a plan for disaster. I need to make some preperations.
I'll update more later,
Love you all
Cindy November 30 Doing WellHi All,
I'm doing well. I'm feeling good.
Went to the Doc yesterday and everything looks fine. I'll have chemo again on December 7th, then again December 27th. The schedule is every 3 weeks. I will have scans again after the chemo on the 7th, they will show if the tumors have changed with the new chemo. Pray they have and that this regimine will work.
I felt well today and subbed at Blue Valley. Tired of sitting at home doing nothing. It was nice to see all the kids again. I really like the Blue Valley School district.
I have been scanning in all the old family pics so I can put them together in a movie after I've sorted them all out. It's alot of fun going down memory lane. Since I have been scanning in my old photos mom now says when I'm finished with mine I have to scan hers in. It's a great way to save pictures.
 Well I'm tired so I think I will go rest for a little bit.
Update more later,
Cindy November 23 ThanksgivingWell I had a good Thanksgiving. I decided I needed to get out of the house and move around. Even though I wasn't feeling all that great I did it anyway. I actually felt better once I was out and moving around. Ben and I went over to Kevin and Susan's. We had 3 invites and decided on there. I had Turkey and Mashed taters. I also ventured to have a small piece of pumpkin pie. Not sure it's on the new diet but darn it it was Thanksgiving and sounded good. I kept everything down and felt pretty good. We watched the new Die Hard movie then I came home.
The guys decided they were gonna go Best Buy early this morning so Ben stayed over. It was good for him to spend some time with friends. Get some good male bonding in. They played playstation most of the night. Was an excuse for Chris to come over and pickup some stuff I had for him here, bringing his brother home.
Well I need to get moving, I feel like my behind is spreading so I'm gonna put on some warm clothes, BRRRRR it's really cold here, and go for a short walk. Will be good for me.
Update more later,
Cindy November 20 Treatment ONEWhat a long day yesterday was, I didn't realize they were gonna admit me to the hospital and then they said I might be there overnight. AHHHH. We got to the hospital at around 730 and they didn't even have the orders from my doc yet. LOL I beat her there. She had ordered an ultrasound of my heart and also another CT scan. I new about the CT scan so I didn't eat. WELL, I didn't eat all day cause I didn't get the CT till around 2. I could have clear liquids and stuff. They brought me orange jello and green jello, coffee, an orange Popsicle and something else. I ate half the Popsicle and drank some coffee. ugh don't do that coffee and orange Popsicles don't work. Then after an hour or so I was bored so thought i'd try the jello. They were in plastic cups. I decided to make rude noises with the jello, cause it really didn't taste very good, you know blow into the side of the cup so the air goes up around the jello. Ya the nurse decided she was gonna teach her grandkids that trick over thanksgiving. Anyway sorry for the rambles up there. So I'm now getting 3 drugs every 3 weeks. The reason for doing it in the hospital this first time is one of them is a cousin to the adriamycin I had the allergic reaction to. Epirubicin, its red just like adriamycin. I did fine. No reaction. They gave it to me slower than you normally get it and that could have help. They also gave me lots of benadryl before hand. Fluorouracil (5/FU) no problems with it. Cytoxin- I had this one before and its the one they says causes nail discoloration, and I think made my nails separate and fall off. I have a feeling I will be completely bald this time. All three of these cause hair loss. The only problem with that is winters are cold in Kansas and I really don't like wearing hats, or coats for that matter. Guess lots of things have to change. I took my nausea meds last night. She prescribed 2 but one is for anxiety and sleep as well. I'm talking compazine 10mg and Ativan 0.5mg. I was a little nauseous last night but so far this morning I'm ok. I've been up for a couple of hours and drank some water. I haven't eaten yet and really need to get some food in me. I'm on a new diet. I have to eat foods that are low in phosphorus which means I cannot eat- Dairy, Chocolate drinks, dark colas, cheese, custard, milk, ice cream, with protein its mainly stuff I don't like anyway you know- beef liver, chicken liver, fish roe, sardines, organ meats, No Dried beans and peas, and then no bran cereals, caramels, seeds, nuts (I love almonds) wheat germ and whole grain products. I'm thinking what the heck am I gonna eat cause I also am not suppose to eat fresh fruit and veggies cause the possibility of bacteria on them that could make me sick. Gonna be a long haul this treatment cycle, but at least I feel I'm getting above the standard quality of care for cancer patients. OK that was alot to type and I need a short nap before I go get my nuelasta shot and blood work. Oh I only have to drive 40 minutes for that instead of the 1 1/2 hours. There is a clinic in Wagemo, affiliated with the one I go to in Topeka, which is where I just moved from so it will give me a chance to go see some friends as well. Well depending on how I feel. OK I'm rambling. Update more later, Cindy November 18 The PainI've started taking the lortab again. The new pain meds just dont work as well. Someone told me it is for breakthrough pain. It is also addicting. I'm sure the lortab is addicting as well but it helps better than the hydormorphone. I'm also combining it with naproxin. I take about an hour or so after the lortab. Today I didn't take any meds until just a little bit ago. I wasn't really hurting, but I stood up most of the day.
I have an appt with the doc tomorrow and should find out what chemo I will be taking. I'll let you now
Cindy November 17 Surgery recoveryI'm recovering fine from the surgery but, I've been in pain for the last couple of days. The pain is on my right side at the bottom of my rib cage. I called my doc last night and she thinks it might be from the lesions on my liver. Mom and I drove to Topeka this morning to pick up a prescription for some pain medicine. You cannot fax prescriptions for narcotics. I've taken it once so far. Not sure if it is helping any more than what I had before.
Most likely when I go to the doc on Monday I will start the new chemo. I was amazed that she actually came to the phone when I called. She also called me this morning to tell me the prescription was waiting for me at the desk at the hospitol, Dr. D called, not the nurse. Anyway, sitting stretched out helps the most or standing. sitting up in a regular position is uncomfortable. You dont realize how often you take a deep breath until it hurts to take one, or even to cough.
Well I need to go take a nap or something. This new drug makes me tired. I'll post more later.
Cindy November 15 Post SurgeryWow been a long week.
I had my surgery yesterday and came home last night. They did not do the hysterectomy. My ER status was not positive enough to be considered positive. They were clinically negative. And having positive ER is the reason they would do the hysterectomy.
There is a cancer board that meets and it is a group of doctors and oncologists and they discuss patients. I was the topic of discussion yesterday early afternoon. In their discussion they made the determination that they would not remove my ovaries just the lump.
Dr. Perdue did remove the lump and it was in the muscle. I'm sore today but not that bad. They will send it in for testing and should have the results by Monday when I have a meeting with my oncologist.
Its so nice to feel like a person and not just another chemo patient. This group in Topeka is awsome.
Well I'm gonna go take a nap.
Have a great day.
Cindy November 13 SurgeryI went to the Dr. yesterday and my surgery will be Wednesday at 1pm at Stormont Vail in Topeka. I will most likely stay overnight, not sure what time I will be home on Thursday. They have told me that I will not be able to do anything for at least a week. I get to be a couch potato. Man that's gonna be hard. Please pray for Ben. LOL After the week it will depend on how I am feeling. I will not be able to lift or do anything strenuous for 5-6 weeks but should be able to work some. I’m not sure when I will start Chemo again but it will be after I have fully recovered from the surgery. I’ll keep you informed when I learn anything new. I have an appointment on Monday to meet again with Dr. D to discuss the chemo issue and our course of action. I'll be sure and update with any new news when I get it. Love you all, Cindy November 07 PET Scan newsHad my PET scan yesterday and met with the surgeon and my new Onc today. News was not good. I have spots showing up on my liver and lungs along with the new lump that I found. Will meet with the OB/GYN doc on Monday morning and get surgery scheduled for sometime next week. The OB surgeon and the one I met today will coordinate so they can do both surgeries, I'll have my ovaries removed and I'm going to tell him that while he is doing it to remove the uterus as well, and the removal of the lump. The surgery to remove the lump will be quick and easy. Not sure about the other. Will update and post more as I know more.
After they get labs back on the lump we will decide on what to do. She was just talking radiation at first but now I am looking at more chemo. I'm not looking forward to it but anything to help. I'll keep you informed when I find out more. I was talking to a lady I work with who has had a left masectomy and a hysterectomy and she was joking that she is a 25% woman. She only has one breast. I need to tell her that I'm going to be joining the 25% club. Well I need to get ready for work. Have a great evening. November 01 Doctors Appt todayI went to the Doctor today. She is awsome.
I'm scheduled for:
PET scan/ CT on Tuesday, November 6
Meeting with surgeon Wednesday, November 7
Surgery will either be Friday, November 9 or Monday, November 12
Pelvic Ultrasound Tuesday, November 13
We are not going to biopsy the new lump, will have surgery to remove it and do all the testing. This sounds logical. One procedure instead of two.
We will also do: bloodwork and genetic testing. I'll meet with a genetic counselor to explain all the genetic stuff to me.
Overall I was very impressed with the new doctor. She was very thourough and asked alot of questions. If it turns out to be cancer we will probably do Radiation therapy instead of chemo.
I'll keep posting on here and will update with any new information.
Have a great night.
Cindy October 30 AppointmentI have an appointment for Thursday at 1pm with the Doctor in Topeka. I'll have to go get copies of my ct and sono from the hospitol and copies of my records from the Oncologists office. I'm taking the records just in case. And it would be nice to have a copy for myself.
I have an eye appointment Wednesday, there is a bump under my eye and the Onc thought it could be a plugged duct. I'll get it checked out. Haven't been to the eye doc on a very very very long time so I guess it's probably time.
Hugs and prayers to all,
Cindy
Err saved the Happy Dance Kitty in my photo album and now the kitty doesn't dance. OH well scroll back in my blogs and he's dancing away. LOL October 28 Long Long timeWell it's been a long time since I updated my space. I've been really busy, working and trying to get my life back after breast cancer. I was doing pretty well until last week. I've been working 2 jobs and I'm getting ready to start another one that will be every other weekend at Big Lakes Developmental Center. I have also interviewed for a teaching position at Wakefield Grade school. So everything is starting to look up.
I have finished chemo, I'm taking my Tamoxifen (and dealing with hot flashes), my hair is growing back, my nails are growing back.
 Life is good. EXCEPT.........
CRASH** SLAM**BANG**
 I hit a brick wall. Last week I was showering and something felt different in the muscle area on my left side. The mastectomy side. I thought it cant be anything because you get a mastectomy to stop the cancer from coming back. All my reports showed clean margins and everything looked good.
I called the onc and got in for an appointment. He felt it and sent me for a CT scan and a Sonogram of the area. Not sure the results of the CT but the nurse doing the sono told me there was definately something there. I was watching the screen and could see the area as well. My onc nurse called me and told me the onc wants a needle biopsy of the area. I'm not ready for all this again. She had a hard time scheduling the biopsy, but in the mean time, I spoke with a couple of ladies from work and they recommended a breast cancer specialist in Topeka. I called my oncs office back and we are doing a referal to the specialist. I will call their office in the morning to see what's up and hopefully have an appointment scheduled for this week. To have something (hard lump) come back so soon really worries me and I'm going to be as aggressive as I was before and actually even more aggressive because I'm switching docs. It means a farther drive but I dont care. I want the best care I can get. I'm going to contact the American Cancer Society and see if their is any help they can give me with transportation or recomendations of other docs.
I'll keep everyone informed and hopefully will have time to keep up with the blogs again. I get busy and forget to come here and update about me.
Love you all and please keep me in your prayers,
Cindy  |
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