I went in to Dr. Rodgers' office this afternoon to have my monthly hormonal and bone strengthening injections. Blood tests performed the week prior showed my cancer counts at 147 -- down from 1579.5 last October 2009! Yeah! :D
I was very pleased to tell the nurses (who were very happy to hear) about the results of the bone scan -- showing new bone growth and the plan to avoid chemotherapy for the next few months while monitoring this progress. I will be returning to Dr. Theriault at MDA in March to have another bone scan to determine if the new bone growth is continuing.
More to come...
I have copied in the Table of Contents from Lori Hope's "Help Me Live - 20 Things People With Cancer Want You To Know About" -- I think the Chapter Titles say it all. :D
1. Its okay to say or do the wrong thing
2. I need to know you're here for me (and if you aren't, why not?)
3. I like to hear success stories, not horror stories
4. I am terrified
5. I need you to listen to me and let me cry
6. Asking my permission can spare me pain
7. I need to forget -- and laugh
8. I need to feel hope
9. Telling me to think positively can make me feel worse
10. I want you to trust my judgment and my treatment decisions
11. I want compasion, not pity; comfort, not advice
12. I am more than my cancer; treat me kindly, not differently
13. I want you to help, without my asking you to
14. I like to be held in your thoughts or prayers
15. My moods change day to day; please forgive me if I snap at you
16. Hearing platitudes or what's good about cancer can trivialize my feelings
17. I don't know why I got cancer and I don't want to hear your theory
18. I need you to understand if I don't return your call or want to see you
19. I want my caregiver to take good care of herself or himself
20. I don't know if I'm cured, and bringing up my health can bring me down
Tuesday, February 16, 2010
Tuesday, February 2, 2010
02/01/10
I returned to see Dr. Theriault, who decided to order several follow up tests (like the ones I had when I was originally diagnosed) -- a bone scan, bone survey, pelvic CT scan and blood tests.
I had previously had a follow-up PET scan done through Dr. Rodgers but the results were very hard to determine any progress. The pictures looked very much the same as my first PET scan from six months ago, so he considered me to be in 'stable' condition. This was before the 'cancer counts' came back from my blood tests last Dec/09 that dropped by half!
My friend Shawna offered to come with me for the all day testing and I am very glad that she did! It made the time go by much quicker because we were able to talk and laugh and play games and do crosswords! :D
She returned with me today to get the results of those tests! What a trooper!
I told her I was expecting to hear four different possibilities for future treatment -- stay on the same medication treatment, start chemo, start more radiation, or something completely different. We were both extremely surprised by the amount of questions Dr. Theriault was asking about my current health. He then began to detail that my 'cancer count' from last August when I first saw him for a second opinion was over 1000 and my recent 'cancer count' from two weeks earlier was at 185! Still seriously high, but an amazing show of recovery! I was so surprised and we were both so relieved! :D
I also asked Dr. Theriault about the one blood test that was taken for a 'floating cancer' and he explained that it was to check for leukemia. That blood test came back negative! Again, relief!
Dr. Theriault then began to show us the results of the bone scan (MRI) where he pointed out all the spots that revealed healing and bone growth! Total amazement and disbelief!
All this pain/aching that I have been feeling -- I knew in the depths of my soul was because the Tamoxifen was working! It was blocking the spread of cancerous cells! Dr. Rogers kept telling me that I shouldn't be feeling any discomfort! Dr. Theriault said it was very normal (along with many other people that I've talked to). Also the bone strengthener is what people with osteoporosis use -- that also was working! They don't call them 'growing pains' for nothing! I used this analogy several times to explain my symptoms -- bones shrinking will hurt just as much as bones growing! I've lost 2 inches in my height since starting this treatment -- you can't tell me that isn't because the Tamoxifen is drying up all the cancer cells and shrinking the size of my bones. Now there is some new bone growth showing, so I'm also hoping that some or all of that 2 inches in my spine might be replaced because I'm looking incredibly deformed lately! LOL Sort of all legs, then arms and then a head -- its weird! My boobs are sagging into my hips! LOL
If I had just said yes to Dr. Rodgers -- the chemo would have probably destroyed those new cells being grown on my bones and I would have never know about the progress I made. So, its a good thing that I asked questions, did some research, got another second opinion and made decisions for myself!
I will continue my monthly injections with Dr. Rodgers (because the location is so convenient) and return to see Dr. Theriault in about 2 months to have another bone scan in order to monitor my recovery.
I am just sooooo grateful! Considering my diagnosis -- I am very lucky and I honestly feel so blessed to have such loving and caring people in my life right now! All of their care, best wishes and prayers have truly helped me keep a positive attitude and heal! Thank you to all of you! XOXO
I've been waiting for almost six months to get my hair done because I didn't want to waste money if it was all going to fall out anyway! LOL I was ready to buy some crazy bright pink wig after starting chemo! LOL Now, since chemo may not be in my immediate future, I can finally go and try to beautify myself! :D Also, I am still planning a trip to Sedona to look into the holistic side of healing -- hopefully, some time in the spring.
More to come...
I had previously had a follow-up PET scan done through Dr. Rodgers but the results were very hard to determine any progress. The pictures looked very much the same as my first PET scan from six months ago, so he considered me to be in 'stable' condition. This was before the 'cancer counts' came back from my blood tests last Dec/09 that dropped by half!
My friend Shawna offered to come with me for the all day testing and I am very glad that she did! It made the time go by much quicker because we were able to talk and laugh and play games and do crosswords! :D
She returned with me today to get the results of those tests! What a trooper!
I told her I was expecting to hear four different possibilities for future treatment -- stay on the same medication treatment, start chemo, start more radiation, or something completely different. We were both extremely surprised by the amount of questions Dr. Theriault was asking about my current health. He then began to detail that my 'cancer count' from last August when I first saw him for a second opinion was over 1000 and my recent 'cancer count' from two weeks earlier was at 185! Still seriously high, but an amazing show of recovery! I was so surprised and we were both so relieved! :D
I also asked Dr. Theriault about the one blood test that was taken for a 'floating cancer' and he explained that it was to check for leukemia. That blood test came back negative! Again, relief!
Dr. Theriault then began to show us the results of the bone scan (MRI) where he pointed out all the spots that revealed healing and bone growth! Total amazement and disbelief!
All this pain/aching that I have been feeling -- I knew in the depths of my soul was because the Tamoxifen was working! It was blocking the spread of cancerous cells! Dr. Rogers kept telling me that I shouldn't be feeling any discomfort! Dr. Theriault said it was very normal (along with many other people that I've talked to). Also the bone strengthener is what people with osteoporosis use -- that also was working! They don't call them 'growing pains' for nothing! I used this analogy several times to explain my symptoms -- bones shrinking will hurt just as much as bones growing! I've lost 2 inches in my height since starting this treatment -- you can't tell me that isn't because the Tamoxifen is drying up all the cancer cells and shrinking the size of my bones. Now there is some new bone growth showing, so I'm also hoping that some or all of that 2 inches in my spine might be replaced because I'm looking incredibly deformed lately! LOL Sort of all legs, then arms and then a head -- its weird! My boobs are sagging into my hips! LOL
If I had just said yes to Dr. Rodgers -- the chemo would have probably destroyed those new cells being grown on my bones and I would have never know about the progress I made. So, its a good thing that I asked questions, did some research, got another second opinion and made decisions for myself!
I will continue my monthly injections with Dr. Rodgers (because the location is so convenient) and return to see Dr. Theriault in about 2 months to have another bone scan in order to monitor my recovery.
I am just sooooo grateful! Considering my diagnosis -- I am very lucky and I honestly feel so blessed to have such loving and caring people in my life right now! All of their care, best wishes and prayers have truly helped me keep a positive attitude and heal! Thank you to all of you! XOXO
I've been waiting for almost six months to get my hair done because I didn't want to waste money if it was all going to fall out anyway! LOL I was ready to buy some crazy bright pink wig after starting chemo! LOL Now, since chemo may not be in my immediate future, I can finally go and try to beautify myself! :D Also, I am still planning a trip to Sedona to look into the holistic side of healing -- hopefully, some time in the spring.
More to come...
Friday, January 29, 2010
01/29/10
Summary of the first six months of my treatment and the mental/physical ordeals I survived...
There were several more tests ordered by my oncologist: Bone Survey, Bone Scan, CT Scan of torso, biopsies of breast tumors and CT Scan of brain. The biopsies determined that my breast cancer was hormonal based (Estrogen Positive), so they prescribed Tamoxifen (one tablet a day), and monthly injections of Zoladex (to block my hormone production) and Zometa (bone strengthener).
I got a second opinion from Dr. Theriault, an oncologist at MDAnderson (MDA) who specializes in breast cancer with bone metastases. I found him by searching the MDA website and was so pleased to find a specialist in exactly the field of what my diagnosis was! After reviewing all my test results and meeting with me, he said that he agreed with the treatment plan and that Dr. Rodgers (my current oncologist) was with a very reputable organization. I later found out that they were once affiliated with MDA.
This put me at ease and I was ready to start my monthly treatments as I had already been on Tamoxifen for about a month. I had been dealing with a lot of pain (prescribed Vicodin) since starting the Tamoxifen, but was assured that this is not normal by Dr. Rodgers. The MDA specialist disagreed and said he usually prescribes a steroid to help avoid any 'spikes' in pain from the medication. This was my FIRST 'mixed message' from my oncologist. Dr. Rodgers finally prescribed the steroid, but it helped very little at this point.
My first injection (Zometa) made me very ill and the calcium level in my blood skyrocketed. I was very ill and out of work for over seven days. Dr. Rodgers' office brought me in on a daily basis to pump saline into my system to thin out my blood in order to lower the calcium levels -- all the while telling me that this never happens to anyone. Subsequent monthly injections have now included a pre-med for nausea -- after being told that, in fact, there are a lot of people that are very ill from this. With the pre-med -- I haven't been nauseous/sick since! This was my SECOND 'mixed message' from Dr. Rodgers.
The other part of my treatment included radiation of the largest tumor on my right pelvic bone. There were 10-12 sessions scheduled, but by the fourth one -- I had no energy/strength and felt so ill that I began to miss work and could barely get off the couch for over a week! Dr. Rodgers was not happy with this at all and demanded that I go back to continue the treatment. After gaining some strength back and able to go back to work, I re-started the radiology sessions again and, sure enough, after four sessions I felt the same way. Again, Dr. Rodgers was not happy with this and was verbally abusive as to how I shouldn't be feeling this way and that it isn't normal.
I couldn't believe what I was hearing -- was this the start of a THIRD mixed message? It just didn't make sense to me -- I felt awful and instead of trying to do something about it, he just kept chastising me for not finishing the radiation sessions. I even told him that the radiologist told me that it would take 6-8 weeks before I would be feeling better -- turns out it was more like 12-14 weeks! Anyway, after about 45 minutes of crying from frustration and defending myself I left his office and told him that I cannot handle this abuse and stress from any doctor. He sent his nurse after me to book my next appointment and I made it very clear that I would not accept that sort of abuse ever again.
I have continued my monthly injections through Dr. Rodgers' office and had Alyssa return with me to meet with him after that last fiasco! He was on his best behaviour this time and discussed further tissue biopsies to test against the various chemo medicines that are available in order to determine which one will react best to my tissue. I thought this was a wonderful idea after asking a few more questions about it.
Next appointment (no Alyssa) -- Dr. Rodgers totally back peddled on the tissue testing and wanted to prescribe two chemo medications for me (Abraxane and Avastin) -- one of which (after further internet research with Alyssa) was originally used for colon cancer and is very new to the treatment of breast cancer with some extremely serious side effects -- occasional nosebleeds and/or ruptured intestines that may lead to death if not brought to the ER immediately.
I asked Dr. Rodgers why he didn't feel the tissue testing was a good idea anymore and he said that it takes four weeks for the results to come back -- I explained that I didn't care about the time if it meant that I got the right medicine. Then he said the amount of tissue they would need would result in a mastectomy -- I explained that I was fine with that and to take them both as well as my uterus and ovaries! He was adamant that this chemo was what I needed and I began to feel like I was the only patient he's had in 30 years who actually asked questions, did research and made their own decisions! This was the last straw -- he made me way too nervous! I was not about to let him put that toxic crap in my veins that easily!
I went back to see Dr. Theriault at MDA! :D
More to come...
There were several more tests ordered by my oncologist: Bone Survey, Bone Scan, CT Scan of torso, biopsies of breast tumors and CT Scan of brain. The biopsies determined that my breast cancer was hormonal based (Estrogen Positive), so they prescribed Tamoxifen (one tablet a day), and monthly injections of Zoladex (to block my hormone production) and Zometa (bone strengthener).
I got a second opinion from Dr. Theriault, an oncologist at MDAnderson (MDA) who specializes in breast cancer with bone metastases. I found him by searching the MDA website and was so pleased to find a specialist in exactly the field of what my diagnosis was! After reviewing all my test results and meeting with me, he said that he agreed with the treatment plan and that Dr. Rodgers (my current oncologist) was with a very reputable organization. I later found out that they were once affiliated with MDA.
This put me at ease and I was ready to start my monthly treatments as I had already been on Tamoxifen for about a month. I had been dealing with a lot of pain (prescribed Vicodin) since starting the Tamoxifen, but was assured that this is not normal by Dr. Rodgers. The MDA specialist disagreed and said he usually prescribes a steroid to help avoid any 'spikes' in pain from the medication. This was my FIRST 'mixed message' from my oncologist. Dr. Rodgers finally prescribed the steroid, but it helped very little at this point.
My first injection (Zometa) made me very ill and the calcium level in my blood skyrocketed. I was very ill and out of work for over seven days. Dr. Rodgers' office brought me in on a daily basis to pump saline into my system to thin out my blood in order to lower the calcium levels -- all the while telling me that this never happens to anyone. Subsequent monthly injections have now included a pre-med for nausea -- after being told that, in fact, there are a lot of people that are very ill from this. With the pre-med -- I haven't been nauseous/sick since! This was my SECOND 'mixed message' from Dr. Rodgers.
The other part of my treatment included radiation of the largest tumor on my right pelvic bone. There were 10-12 sessions scheduled, but by the fourth one -- I had no energy/strength and felt so ill that I began to miss work and could barely get off the couch for over a week! Dr. Rodgers was not happy with this at all and demanded that I go back to continue the treatment. After gaining some strength back and able to go back to work, I re-started the radiology sessions again and, sure enough, after four sessions I felt the same way. Again, Dr. Rodgers was not happy with this and was verbally abusive as to how I shouldn't be feeling this way and that it isn't normal.
I couldn't believe what I was hearing -- was this the start of a THIRD mixed message? It just didn't make sense to me -- I felt awful and instead of trying to do something about it, he just kept chastising me for not finishing the radiation sessions. I even told him that the radiologist told me that it would take 6-8 weeks before I would be feeling better -- turns out it was more like 12-14 weeks! Anyway, after about 45 minutes of crying from frustration and defending myself I left his office and told him that I cannot handle this abuse and stress from any doctor. He sent his nurse after me to book my next appointment and I made it very clear that I would not accept that sort of abuse ever again.
I have continued my monthly injections through Dr. Rodgers' office and had Alyssa return with me to meet with him after that last fiasco! He was on his best behaviour this time and discussed further tissue biopsies to test against the various chemo medicines that are available in order to determine which one will react best to my tissue. I thought this was a wonderful idea after asking a few more questions about it.
Next appointment (no Alyssa) -- Dr. Rodgers totally back peddled on the tissue testing and wanted to prescribe two chemo medications for me (Abraxane and Avastin) -- one of which (after further internet research with Alyssa) was originally used for colon cancer and is very new to the treatment of breast cancer with some extremely serious side effects -- occasional nosebleeds and/or ruptured intestines that may lead to death if not brought to the ER immediately.
I asked Dr. Rodgers why he didn't feel the tissue testing was a good idea anymore and he said that it takes four weeks for the results to come back -- I explained that I didn't care about the time if it meant that I got the right medicine. Then he said the amount of tissue they would need would result in a mastectomy -- I explained that I was fine with that and to take them both as well as my uterus and ovaries! He was adamant that this chemo was what I needed and I began to feel like I was the only patient he's had in 30 years who actually asked questions, did research and made their own decisions! This was the last straw -- he made me way too nervous! I was not about to let him put that toxic crap in my veins that easily!
I went back to see Dr. Theriault at MDA! :D
More to come...
Tuesday, January 26, 2010
Catch Up!
My friend Alyssa had begged me to start a blog and, I must admit, that in hind sight, I regret it! Its been months since my journey began -- July 2009 to be exact, so I have a lot of catching up to do! Alyssa was my rock through those months, but as much as I thought this was a good idea -- I soon found that I didn't have the strength to maintain it -- as I knew I wouldn't.
So, here I am now after gaining my strength back -- blogging for the first time about my struggle with breast cancer. I just hope that I can reach out to some people that may have experienced the same side effects. I would really like to offer them some sort of advice and insight in order to help them through any similar experience.
This is where it began... I was diagnosed (believe it or not) through my chiropractor! He was not pleased with the poor progress of my lower back not healing and ordered an MRI to determine the extent of my muscle/bone issues. He never expected to find that my spine, pelvis and ribs were almost completely covered with cancerous tumors. He reviewed the results with the technicians and even went so far as to consult with an oncologist before contacting me with the bad news. That, my friends, is a man who cares! Dr. Max Vige was the man who saved my life!
This brave man had to tell me that I had about six months to live based on the extent of the tumors spread throughout my body. Not an easy report to give! Not an easy report to hear!
Dr. Max set up all my initial testing appointments -- PET, CT, Mammogram, Biopsy, etc. including the first oncologist I saw -- Dr. Rodgers in Clear Lake, TX . Upon seeing Dr. Rodgers, he assured me that he had seen a lot worse cases and they were still alive today after several years of treatment! Death in six months was now a fear that I could now put in the past! Unbelievable!
Considering I was diagnosed with Stage IV Breast Cancer, I was amazed with such a positive feedback! Was it for real? I knew I had to do my own research and make my own decisions throughout the upcoming treatment plan. I was just so grateful for being given this opportunity!
After seeing the MRI and PET scan results showing the amount of cancer throughout my body -- I was very surprised to hear that I would survive my 45th birthday!
More to come...
So, here I am now after gaining my strength back -- blogging for the first time about my struggle with breast cancer. I just hope that I can reach out to some people that may have experienced the same side effects. I would really like to offer them some sort of advice and insight in order to help them through any similar experience.
This is where it began... I was diagnosed (believe it or not) through my chiropractor! He was not pleased with the poor progress of my lower back not healing and ordered an MRI to determine the extent of my muscle/bone issues. He never expected to find that my spine, pelvis and ribs were almost completely covered with cancerous tumors. He reviewed the results with the technicians and even went so far as to consult with an oncologist before contacting me with the bad news. That, my friends, is a man who cares! Dr. Max Vige was the man who saved my life!
This brave man had to tell me that I had about six months to live based on the extent of the tumors spread throughout my body. Not an easy report to give! Not an easy report to hear!
Dr. Max set up all my initial testing appointments -- PET, CT, Mammogram, Biopsy, etc. including the first oncologist I saw -- Dr. Rodgers in Clear Lake, TX . Upon seeing Dr. Rodgers, he assured me that he had seen a lot worse cases and they were still alive today after several years of treatment! Death in six months was now a fear that I could now put in the past! Unbelievable!
Considering I was diagnosed with Stage IV Breast Cancer, I was amazed with such a positive feedback! Was it for real? I knew I had to do my own research and make my own decisions throughout the upcoming treatment plan. I was just so grateful for being given this opportunity!
After seeing the MRI and PET scan results showing the amount of cancer throughout my body -- I was very surprised to hear that I would survive my 45th birthday!
More to come...
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