| Blog for a Cure - A community of cancer survivors supporting each other. | Log in |
 |
 |
|
|
 weezie's Cancer BlogApril 28, 2008
Here is the link to the Healthcare programme that I mentioned I saw a couple of weeks ago. Well worth watching. http://www.pbs.org/wgbh/pages/frontline/sickaroundtheworld/
Posted on April 28, 2008 at 12:39:33 PM by Louise (
 Health Care in America compated to the rest of the World,  6 comments)
April 26, 2008
Just wanted to update eveyone on my last few months walking through the corridor of fear, waiting on test results that seemed as far away as the moon. Since my first visit with my new Oncologists last August in 2007, there was always a fear and surprise that my small itsy bitty tumour that had been removed (no cancer in any nodes), 26 treatments of radiation, had moved to my spine! OMG was I just swimming in terror. “How could that be?”, I asked. They shook their heads and scratched their _. “Well we really need to be proactive here”, so we will put you on Arimidex, (and of course most of you know the side effects of a drug that takes away estrogen for women or progerteron for males. It sucks.) Here I go again, night sweats, aches and pains in my whole body, sleep deprivation and oh yes, give me some of those Hungry Man meals. Can’t stop eating. All in the face of statitics. Breast Cancer survivors need to take these drugs to surivive. OK, got it. Then the Dr.’s wanting to tell me some good news said this ” We will give you another bone scan, a ct and an MRI, then we will re evaluate the situation in January. Ok here we are and it is April. I had another MRI and another bone scan in March. So I now have 4 sets of Radiologist’s reports for bone scan, bone density, MRI’s and this is the situation. The area of concern is stationary. No movement which is what the Oncologists were hoping for. So that means no spread of the Cancer at least till the next Bone Scan in August. Since the Dr.’s can not biopsy the spine very easily to be definitive about the Cancer, they are relying on SCANS. So for now you might call me ON HOLIDAY and smelling every fresh new flower that comes up. I’m taking my bone enhanching medicine – CLASTEON faithfully. Now that drug is supposed to counter act the side effects of the Arimidex but quite frankly that is all hog wash. I THINK THE SAYING GOES: NO PAIN, NO GAIN. Al right already I get it and so do the millions out there who are dreading their meds. Not only do we have Cancer we have another diease BLIND FAITH. OK, I am stopping the bad stuff now. Anyone tell me how to download a photo. I thought it might be nice if I could post something other than my cartoon of myself. Oh glorious weather today in ONtario. Oh yes and good old TTC (Toronto Transit Commission) decided to go on strike last night Friday at 11pm. Can’t you just see the lawsuits coming from Mothers who have 12 year old daughters stranded with all those boogy men out there. What a Mayor we have. He should just go away. Millions of people are without transportation all weekend and well into the work week. I think the retailers are going to have something to say about this too. OK enough ranting. See you later. Weezie from Canada eh boy that sounds much better. I bet the news made you happy. Will you still kepp on taking this other medication? I need to have the doctor do a bone scan on me when I see him I guess I have not had one done. Anyway keep up the good work! Judy; thanks for your question. Yes, I am doing pretty much what the Dr.’s recommend. The bone enhancing drugs (bisphosphonates -general term for a group of them), are absolutely imperative. Just think of it. You have all your estrogen removed by one drug, and yes your bones are going to deteriote in a flash. It doesn’t tale a scoemtost to tell you that a woman with no disease will naturally have bone disease, even more than a man. Once you are on a drug to remove all the natural estrogen you really need a replacement drug to make sure your bones don’t break or become brittle. So yes make sure you are doing the most to protect yourself. So for now I am still toleration Arimidex, and Clasteon (for bones). Just worked myself into a frenzy doing backyard work and guess what, I feel better for it. The aches and pains will only get worse if you sit and think about it. Do whatever it takes to make the process better. Believe and have faith that the Dr.’s are helping you and that even though you are in pain, work through it if you can. I was very upset for a few months, likely feeling sorry for myself, but after reviewing so many other people’s story on this site I realized that this is not the time to do the negative but jump up and try, really TRY to push yourself. IT WORKS> Love to you Judy and get with the programe. Weezie ok I will surely do as ordered….lol I have been trying to move around a little more here lately and suck up the pains. I am going in about a week for my routine bloodwork and to see the family doctor…I am sure he thinks I forgot him in the shuffle of all these other doctors…I think I like him best though and I believe he would run more test and check things I want checked more so then the cancer docs….Glad you had good news again! Good news! I am so glad to hear good news. Blessings and health to you Mac
April 18, 2008
I was channel surfing the other night and fell upon an inspiring programme on PBS. If you haven’t seen it here is the address: http://www.pbs.org/wgbh/takeonestep/cancer/video-ellerbee_01.html This is a round table of Doctors, mostly, who are living with Cancer and still treating their patients. It will give you inspiration and enlightenment. I hope you all view this when you have 15 spare minutes. There is nothing like learning while we take our walk on this wild ride. Take care everyone. Let me know if you watched it. Hi Weezie….yes, I watched the video. Parts of it were interesting. It does make a person feel better to stop and realize that doctors are human and they deal with the same issues daily that we go thru. I agree with alot of what was said. Thanks for sharing…...Judy i started watching this online last night and will continue it in the next couple of days. so far so good. i hope to have angel watch it with me soon, it is inspiring. thanks for posting this for others to view. I will try to watch it asap…
March 28, 2008
Anyone had your Dr. prescibe a drug for bone thinning or treatment to secondary cancer – metastasis in the bone? Briefly, I have received 2 treatments called Aredia or via I.V. which is about a 3 hour treatment. It is done on an outpatient basis and requires you to go monthly perhaps for the rest of your life as Cancer really is a lifelong project. Since my veins roll and it is quite hard to get a person to do the I.V. insertion properly I was advised to have a portocath inserted. Well not too happy about that one so I went onto a website – google the name(cancerbackup) you will find it. Found out that there are a group of drugs under Bisphosphonates and that one of them was in pill form. Well you guessed it. I just saw my Oncologist this week to ask him about the alternative since I was not comfortable with knowing a portocath would be with me for ever. I can see it while you are doing chemo but not for ever! Well he said I could do this and that the results would be basically the same. So now I am on a drug called Clodronate – 2 pills taken orally twice daily. 1600 mg. daily, in other words. He felt that it was easier taking an iv once a month. Perhaps that is true – not for me. I would rather take the pills daily than go through the travel, parking & costs plus my time. I go every month anyway for blood tests. Just thought if anyone was being given this you might want to know that it is for life. Also I am bemused that my Oncologist never gave me that alternative in the first place. Be vigilant about getting all the facts. Thank god for the internet. Take care everyone. Weezie from Canada eh
Posted on March 28, 2008 at 12:12:49 PM by Louise (
BISPHOSPHONATES -bone thinning or secondary cancer treatment, 4 comments)
That is wonderful, Weezie. I don’t blame you one bit. I would much rather take the pills than have the IV. It just burns me up that your oncologist did not tell you about both and let YOU MAKE THE CHOICE. That is awful that he just took it on himself to make the choice for you. The info you can get on the internet is just wonderful. How did we ever get along without it? the more you know the more you can tell your Doctor. Hug Sherri Hi Louise, I am sorry it took so long to get back to answer your questions of March 28. I am been feeling a little under the weather. Dear Joyce; I’m sorry to hear you haven’t been up to snuff lately. I hope everything is going to be better very soon. I guess we just have some of those days regardless of how well our progress goes. Update: I am now taking Clodronate which is the pill form for a week. Seems it gives heartburn which is not great but will monitor this for the next couple of weeks. Can’t figure out why, however I may call the drug company just to find out if this is rare or standard. I have never suffered from that so it feels uneasy. Better than the weekly trip for i.v. My surgeon who I saw on Monday said both mammogram and ultrasound look fine. Just a small amount of fluid where surgery was done but he said that is pretty common. Wants me to do another ultrasound in 6 months. Bone scan scheduled for next week and will find out if the spot on my spine has shrunk, stayed the same or progessed. That will be the true tell story but will not be seeing surgeon for another week after that to find the results. Here we go again with the wait game. I think that is more trying than the exam. Pretty stange in this modern medicine that they can’t tell if it is cancer or an old injury or arthritis. Thanks for all your support it really means a great deal to me. I try not to talk about this as it just makes the people in your life feel sorry for you or just plain uncomfortable. Love this site for support. Keep on plugging all you wonderful members. Love from Weezie from Canada eh.
February 26, 2008
I am on my second session of the above drug via IV. My veins are almost non existent so I am considering having a plug inserted above my breast to make it easier to have the drug administered every month. Anyone had this done and if so what if any side effects should I look out for. Also I am a green horn on what it really is supposed to do for me. I heard I will be on it for life which if lucky that is a long time. However I’m not sure I like the sounds of this object under my skin forever though. Also side effects? I seem to feel lousy the next day such as a headache, diareaha and just feeling kind of weak. Is that normal. The Dr’s don’t really tell you much. Any help on this subject would be greatly appreciated. I know only that there appears to be signs that my cancer metastisized to my spine. I’m not upset since I am on Arimidex which basically weakens the bones so I am glad that this drug should conteract the arimidex side effects. Thanks to whoever is listening. Louise Hi Louise, Dear Joyce; You have been very helpful and I might add a pillar of strength. How you cope I do not know. I am just new to the game but it sounds like you have been through it all and back again. The drug I am on is for the bones. Having the delightful task of being on arimidex, the Dr’s want me to continue the dose of Aredia for I guess life. It appears that there is some metastis to my spine, but they aren’t completely sure it is not an old injury. As they can not biopsy the spine due to lack of technology in the machines, we have to just image (MRI) my back over time. If my back stays the same then it was an old injury, if it spreads then another treatment will likely be introduced, if it recedes then the Aredia is working. They say it is not chemo but sometimes I wonder …hmmm. I’m sure I am not imagining side effects here. I have to explore more web sites to find out side effects. I went to the Arimidex website and found a stream of 10,000 comments on their side effects. That was the best website and made some email friends there too. I hope you are doing well and that there is a clean bill of health. So easy to say when it isn’t you but I know that anxieity is the killer here. I need to find ways to calm down and take one day at a time. Thanks for all your help Joyce. Will probably watch out for your next post. Anything I can do to help I would gladly like to. Take care from up north in winter wonderland. Louise My mom has a groshong catheter in the left side of her chest. She has been on chemo for around 14 months and can’t imagine getting the chemo without having the port. And it makes giving blood so much easier, faster and less painful. It just made everything less traumatizing because she isn’t constantly being poked and prodded. We highly recommend it! Julie or Aimee; Thanks for your response. I saw your photos too. My heart goes out to you two as it seems there is always a new mountain to climb for your mom and yourselves. She is lucky to have you. My Mom passed away in 1970 of breast cancer and I was the ripe young age of 20. I helped her in many ways for the last 3 years of her life. We became like one. It was important to her that she live as normal a life as possible. My brother was in Germany working, during her final year but came home to find her quite sick. He felt so guilty for being away and didn’t realize how sick she really was. Guilt was the illness for my brother. This disease touches many people but it can also enhance relationships and make us better people. I hope this is what I get from my fight. Thank you for your honest reply regarding the porto cath. I’m Still hesitating till I get more information from my Oncologist. I will keep watching for your Mom’s progess. You are great daughters to be with her and I know that you feel the pain of helplessnes. Just realize she wants you both to be happy so keep smiling and joking as best you can. It is a kind of pain reliever for the person who is doing the battle. Thanks again … from Canada eh…. Louise
|
weezie's Cancer Blog (5)
|
My Supporters:I support:Advertising
Blog for a Cure InfoBlog for a Cure spends about $200 a month to keep this site up and running.
|
Posted on 
Posted on 
Posted on 
Posted on 
Posted on 
Posted on 
Posted on 
06.22.08 - 
Thanks for your support -
Weezie,
Bless you and thank you from the bottom of my heart for e-mailing my friend, Connie. As far as I know you are the only one that showed interest and for that I sincerely thank you. Connie has been a dear friend that has been aa RN for more than 30 years that has worked the past 20 in Hospice then she went to the Bone Marrow Transplant division and she told me that she just couldn’t handle the BMT floor, then since has solely concentrated in Hospice only. Though, I don’t think I have ever known such a tremendous caring and devoted RN as Connie and I would do anything to help any one of her friends that is stricken with any cancers. No, she doesn’t belong here, but I am certainly gong to advise it, for when I sent her letter here Connie had no idea that I had done that, but I would sincerely do anything to help for her heart is always in the right place and would go to the end of the earth for any of her patients, friends and especially family. She is truly one of a kind. Thanks again Weezie. May God Bless you throughout this journey. Love & Hugs, Patty
Dear Weezie,
I truly thank you for taking the time to share your story with me about your dear Mother and sincerely appreciate your views as being her “child”. Whereas, I have always been the Mom, Dad & Friend & etc., whatever was ever needed at any particular time to my children, for at that time I did think that I could be ALL THINGS, though years later I know we are all human and things happen beyond our control. I thought our lives were going so well when I was dx @ 37 then I truly did feel like a deer caught in headlights. I am really going to put much thought into what you had to say.The last thing I would ever wish to do is to take anything away from my children, for they are my life and everything that matters to me. I thought I was helping them by sparing them details.
My daughter graduated from college this past Tuesday 4-29-08. When she graduated from HS in 2004 I thanked GOD for giving me that special time and being able to share such a monumental time in her life. Now, 4 years later I was able to watch her graduate college. It was a very emptional evening for me, and one that I give tremendous thanks for. It seemed so recent that my oncologist told me that “he wasn’t sure I could pull through and I needed to get my affairs in order”. Still typing that makes it seem real all over though as my physican he had his duty for at that time my platelet count had dropped to ZERO despite a regime of transfusions and therapy that I was only 2nd in the US to have this experimental treatment. When I was admitted my platlets were “3” and despite all of the state of the art care that I was receiving the hemorrhaging was faster than they could transfuse me and they dropped to “ZERO”, though my Dear Father wheeled me out just 2 days before Christmas for one of the most joyous holidays of my entire life. There was no gifts for my children for I had spent the entire month in the hospital, and for their young ages I felt badly about this. But, they were so mature beyond their years they all so bravely told me that I was the only Christmas Gift they wanted or needed. I was so thankful that I had such important time with my Father for this was our last Christmas, for he passed away early in the spring.
Weezie,
Thanks for leaving a comment on my blog. To answer your question about the book I wrote. The name of it is Cancer, Chemo and Beyond – Survivors and Their Unique Journeys
I have kept a blog going since I was first diagnosed with stage 4 colon cancer in July 2005. I was told by many doctors that there was nothing that could be done and that I had less than 6 months. I quit chemo a year ago because it quit working. Since then I have been traveling, working on my book and living life more than I had since being diagnosed.
The book follows my journey through all the surgeries and chemo and I also have other peoples stories in it with several different cancers.
It should be in the book stores in about a month or 2 but available through the publisher in about 2 weeks. I will keep everyone posted on my blog about when it is available. I have been told it is very inspirational. I did it mainly to help other people that have been diagnosed get through the medical pitfalls like being told their is no hope and not taking that for an answer.
I will keep you posted.
Donna
Dear Donna; thanks for your reply. I am curious about one thing. Since you quit chemo a year ago, do you still see your Oncologists or did you send them packing too? I think it takes a very brave person to make such a big decision as you did. I also believe that there are many out there that would like to do the same thing. I have certainly seen at first hand that chemo is not for the majority of people. Unfortunately, there is so little alternatives left that one feels that is “an only option” policy. Anyway I am hoping to read your book and waiting with anticipation. I hope it will be available in Canada. If not can I order it through you? Good luck on the publication. I guess you will have some publicity and touring too? Weezie
Weezie,
I did send the oncologists packing too. I figured what do they know, none of them thought I would live this long. I did 16 months of chemo total. After awhile it just doesn’t work anymore. The only doctor I still see is my surgeon, after I get scans. What is interesting is the tumors have grown slower since quitting chemo. Actually half as fast.
The book will be available in Canada. I am told it should be available world-wide but you never know with publishers.
I am also buying advertising from Jill at BlogForACure.
Will Keep you posted.
Donna
Weezie,
I see that your oncologist has you on Arimidex, this means that you have positive hormone receptors. I am a triple negative, there is no treatment for negative cancers except chemo and radiation, the triple negative cancers do not responde to hormone therapy. You can email me at Angelwthwingz@comcast.net I have spend hours and hours learning about both the negative cancers and positive cancers.