kbienapfl
kbienapfl's Cancer Blog
July 29, 2008
| Disbelief | Views: 1055 |
Some days I am amazed with what I learn about the cancer treatment world. There are many days I feel completely overwhelmed. Other days I am in disbelief. What I have learned in recent days finds me in the disbelief category.
When I was at Fairview last week, I was basically being forced by the hospital to go with the radiation center that is adjacent to the hospital for my treatment. (There must be a contract between the hospital and this specific radiology group.) I felt like my back was up against the wall and I was made to believe that if I did not go with this specific group of radiation oncologists, I would be making a bad choice in a critical decision. I had mentioned to the doctors that my wishes were to have treatment at CTCA. The response that I received from the group was nothing less than eye rolling and a threatening tone.
During the time in which pen was in hand and a contract to begin treatment was being forced upon me, I felt my entire body respond to the tactics. My blood pressure dropped, my temperature rose and my body was overcome with a physical response. Quite frankly, I felt I was about to code and begged the radiation team to wheel me back to my hospital room for observation.
Looking back, I now realize that something bigger than me was intercepting my care. Once my body had recovered from my subconscious response, I was forced to stand up for my own beliefs the following morning. It was the many angels that have been following me that had knocked me upside the head. They certainly know how to get ones attention when they need to! After experiencing the very strong ‘ah ha’ moment, I canceled all further treatment with the local radiation team.
When we arrived at CTCA on Friday we were educated on the advanced treatment options they have available. I also learned that CTCA is one of very few TomoTherapy practitioners available. Upon further research, I learned that the group in Minneapolis does not offer the therapy.
If I had not taken the time to recognize what the universe was trying to tell me, I would have begun my treatment back in Minnesota. The treatment would have taken care of my immediate pain, but it would not have helped me long term. The feeling of hope that I am now experiencing would never had occurred.
The part of me that is in disbelief is the fact that there are facilities that are aware of better and more advanced treatment options. Instead of sharing this information with patients in need, these facilities choose to do what is best for their bottom line. Sadly, the more I am learning about this industry, the more I am learning how prevalent these practices are believed and followed.
Lessons learned last week;
1. Follow and listen to ones gut.
2. Ask questions
3. Be your own advocate.
Surely you will run across similar situations during your daily struggles. Take the time to listen to what is best for you. The other guy has his own best interest covered.
Chris and Jaime 
Brian Aagaard 
Thanks for your support -
Can’t wait to hear how this new treatment works.
Kathy, while reading this posting I was filled to my core with a flood of emotions and I began to cry. I too had “gut feelings” which I was made to believe by the arrogant disrespectful rad onc and his pied pieper staff were no more than “anxiety” so they doped me up until I could barely walk nevermind think, all because I asked questions he felt “went beyond what any patient needs to know about their treatment”. I just knew that I was experiencing severe dehydration from the combined chemo/radiation so the second round I was determined to have the chemo doc order ivs at home which, “oh my” worked and I was able to contain symptoms with kytril, emend and zofran. Unfortunately the chemo was the least of my problems, the rad onc would not listen to me and continued with radiation until I was devoid of skin on my entire peri/bottom. None of his staff ever instructed me NOT to use the silver sulfadine cream prior to radiation so from about day 13 I was smearing the stuff on just to get to the hospital for radiation. This I found in Boston causes more severe burning of the skin due to the “silver” contents in the cream! My gut told me after the 3rd treatment I was NOT at the place I needed to be but stuffed my intuition and plodded along for 34 treatments. My husband found out on my 1 year anniversary that he has incurable leukemia/lymphoma and I vowed that he would NOT receive any treatment at the hospital where I received mine, I would be a pro active advocate for him or any of my family or friends for that matter if asked to be, something I didnt have during my treatments due to circumstances that is clear to me now (my husband was self medicating himself for bone pain the doctor claims he couldnt understand!) Now I am dealing with long term damage I will have for the rest of my life due to what I believe was a combination of the silver cream and overdosing of radiation. My med records have been exponged but the hospital denies it, however I had the opportunity to read much of it while receiving treatment. I applaud you Kathy for listening to the many angels people like myself have sent to you. I wish I had listened to mine, but I am a survivor and I will go on to fight another day. To all of you out there listen to Kathy, ASK questions after researching your cancer, options, facility, BE your best advocate, listen to your instincts, if it doesnt feel right I believe it probably ISNT! Pray/meditate to your Higher Power. I am glad you are where you are and I believe supposed to be Kathy. I continue to uplift you in healing prayer. Many Blessings, Shalom, Lily
Kathy I am glad you went with your Heart.
Love You
Hey kids,
I was prepared to write a step by step brief of my day. Meeting the radiation oncologists, well everything went fine, but after reading “kbienapfl’s Cancer Blog” I lost interest and just want support her decision. Even though I live close to one of the premier centers for treating my condition, it is still very difficult to sit there as they explain my treatment like I am a third grader (no offense to third graders). I just find it difficult when I sit there and they want to recheck my blood pressure, listen to my heart, and lungs, and ask me how I feel. It just feels like they are checking boxes. I have had my blood pressure, heart and lungs checked more in the last 6 weeks than anyone looking at my eye. I know this is just whining, but why do I go through the same s**t (stuff) every visit when they are all in the same facility??? OK, after all that ranting I am very comfortable with my surgery Friday, but can relate to “kbienapfl’s Cancer Blog”. Maybe Will Smith can write a song “Doctor’s just don’t understand”. I know that we can all be overwhelmed, but just remember our body is ours, learn learn learn and do what you think is best…. Love EyeCandy (Paul)
I am so proud of you for sticking up for yourself! Many Woman have issues with that. Also I have noticed many Cancer patients also have issues with that. When I was having my radiation treatment, many a day I would go in an see people in the waiting room ( most older ) and find that the machine had broken again, and they had to wait 3 or 4 hours. Instead of calling us @ home, to tell us their was a delay they seemed to be more concerned about the money they would lose. I stood up for myself, and was proud to say after I did that, the others were allowed to reschedule, after waiting for such a long time. Again I am so very proud of you and wish you the best of luck. BTW you a very pretty. I know that is not a great concern for you right now LOL I am just happy to be able to get up some days, let alone worry if I am pretty or not! Keep up the good fight. I hope you are an insperation for others.
Dear Kathy; It is amazing how many lessons we can learn from each other, particularly at our club here on BLOG FOR A CURE. Thanks for sharing your story and I too applaud your courage and candor with the Doctors who did not do the right thing. I hope your new treatment works and that you will be posting great news ahead. Angles are amazing creatures. Weezie