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 bo1516's Cancer BlogDecember 15, 2008
Surgery on Dec. 4th seems to be successful. My margins appear to now be clear (for the moment.) I hate it that I have to qualify that they are clear for now, but if there is one thing that I have learned, it is that nothing is for certain. When they called to tell me that I will be coming back in March, I asked if it was for another surgery or a follow-up? It is for a follow up. Thank god for that. My body is tired. This surgery was the easiest on the “site”, however, my stomach is killing me. I can barely handle chicken noodle soup (I made it so I know it is not the soup). I wll need every bit of these three months to heal. I hope they address my lung issue in March…is it cancer or not? I decided that I do not have the energy to mess with a Christmas tree this year. So be it. MP327 I have no way of emailing you. I was definitely thinking about you while you were having your port removed. I hope everything went well and you are doing well.What I can say for sure about this whole process, is that the best thing I did was sign up for these blogs. The bonds (even though we don’t know each other personally) and the encouragement that we receive from each other is priceless. The information that people are willing to share has been invaluable to me. I want to thank everyone for their help and support. I truly have appreciated it.
November 12, 2008
Hi, They found Stage 1 Type II invasive scc. The surgeon (who had assured me this was no big deal) told me I needed to see an oncologist for chemo and radiation. I immediately called my gyno and left a message for him. His first advice was to get out of town, he told me that this was so rare that he did not feel comfortable having me treated in town. Pretty frank advice for a doctor to say that about his colleagues. Turns out he was right. He said that even though the cancer was invasive and moderately aggressive, he thought that I should try to do anything to avoid the radiation. He gave me this question to ask the oncologist. What if I choose to do nothing and have you just watch me? Well, a friend who is a well respected doctor in the community took me to the oncologist (because I had such a horrible experience with the surgeon and really could not stop crying) When I asked the ?? that I was told to ask, she looked at me like I was a nut. She said Well, it is clear, you will have a colostomy, you do not have clear margins. Then she began rifling through my path report. The CT scan showed spots on both lungs that they diagnosed as cancer. All doctors involved said they did not believe this to be true. I went back to the oncologist because I was really crying now. She said that after I left the first time (remember the ?? that I asked) she went back to look at my path report and realized maybe she was wrong, maybe I did not need extensive therapy…she needed a 2nd op. So, She sent me to IU. IU said they believed that I did not need chemo and radio at this time but all of that hinged upon their docs in the path dept agreeing. The first surgery at IU was Aceto Whitening-(This technology is not offered in my city.) They pour acetic acid and the spots that are “bad” turn white. This gives them a good picture of where bad cells and cancer are-as opposed to just a shot in the dark. (On my first surgery, they found 5 spots. The original biopsy showed only the 1 spot) Of the 5 spots, 4 came back as hyperkeratosis, and the 5th (which was the original tumor site) came back as HSIL. I am told that those cells will more than likely turn to cancer. They did not get clear margins-so I will have this again on Dec. 4th. While unpleasant I will take this as opposed to the other treatment I was offered. IU is great! I am seeing a Doctor Bruce Robb. He is very nice and I do like him. Of course there are no guarantees that I will not have to have other treatment, but there really are no guarantees here for any of us on this earth. My cancer though invasive had not yet spread. The path rept did talk about “tongues” The jury is still out on the lung issue, that could be a whole new ball game. The doctors in South Bend just saw Anal Cancer – knew the Nigro Protocol and never went beyond.
Posted on November 12, 2008 at 8:20:59 AM by Kim Bo (
 Info For MP327-Contact info below,  6 comments)
My goodness Kim you really are on a roller coaster here. I hope you are a little more accepting of the new Dr.s’ that are planning your treatment. Of course you haven’t decided exactly what it will be but I am sure you will make the right decision. It is always so terrifying to be given choice A or B and they are so far apart, it really doesn’t seem like a choice because you either want to live or not. I think that is what most Dr.’s give us. A chance to be bold and go forth or sit it out and play the waiting game. I hope you have the right people to guide you through. This is a very tough time, but I want you to know that we are here for you to talk to, vent your feelings and we of course will listen. Good luck. I’m glad to hear that you’ve found doctors that you are comfortable with! It does make these cancer things a tad bit better. Kim, thank you for the information about your surgeries. Sorry to hear you have had some bad experiences with doctors. I hope that you are doing well. I’m sure you don’t look forward to having another surgery. I can tell you from my own experience that the radiation is hell. But, I am now 9 weeks post-treatment and my bowel issues are getting better day by day. I have learned by trial & error what to eat and what to avoid—that is key. I am finding out that not all foods that are “healthy” (such as fresh fruits & vegs) are kind to my digestive system. But my docs have assured me that things will continue to improve with time. As for the chemo I received, it did not have any really horrible side-effects. I did have some nausea, but the anti-nausea drugs helped so much. I had NO energy some days and diarrhea was a huge problem (that being caused by both chemo & rad.) Once I completed the combined treatment, I was feeling so much better in 10 days, it was hard to believe where I had come from. My doctors are all very optomistic about my prognosis. I have a CT scan on 11/21 & see my oncologist a few days later. Hopefully, the news will be good. If you reach a point where chemo & radiation is recommended, I would be happy to go into more detail about what to expect. I hope you will receive good news with your next procedure and that your lung issues turn out to be benign. Thank you again for sharing your experience with me—I am trying to learn as much as I can about this cancer to help myself. It also is important to communicate with others having the same journey. We need to support each other, as there are so few of us in this particular fight. Hang in there! I will keep you in my thoughts & prayers. Kim, Kim—I just wanted to wish you the very best on December 4th. I know you are anxious to get this next surgery over with. I hope all goes well and you receive good news. I am looking forward to having my port taken out on 12/8, as my last scan showed no evidence of disease. I am so optomistic now and I hope you get news that is all good as well. Keep us posted as to how you are doing. Thinking of you—mp327 Kim— Martha
October 27, 2008
Let me start by sayting that after reading about dear Gemma this morning my heart is very heavy. Truly, I have no complaints. I have had my second surgery, and it was much easier than the first. I have a surgeon that is very kind. Unlike the local doctor, I was able to ask questions and have them answered. Unfortunately, my margins still are not clear. They have scheduled my next surgery for December 2nd at IU Medical Center. I wanted to cry for a couple days at the thought, but I keep thinking about all of our friends on this website and elsewhere in the world who would be happy to have this course of treatment. I am learning (or trying to learn) to think differently. I was sure that this last surgery would be the final one. So, I was not exactly prepared to be told I would have it again. I am getting more accustomed to the fact that I cannot take things for granted. Tomorrow is is not promised. I am learning that what the doctors tell me today really only applies to today and not necessarily to tomorrow, as all things change. This is a very hard lesson to learn at my age. I hope I can remember this lesson. The bills are rolling in daily. This has really put a crimp in my budget;however, I do not want to hear myself complain one little bit. I had to use all of my vacation days this year for cancer…and will probably have to do that again next year…Please, tell me to shut up if you hear me complain! In the big scheme of cancer, I have no complaints!
Posted on October 27, 2008 at 9:24:10 AM by Kim Bo (
One More Step in the Process Learning Everyday, 5 comments)
We are here for you when it is a good day and not so good day. Hug Sherri That is ok. We are here to listen to WHATEVER you want to say. I was 52 when I had cancer the first time and I remember how hard it was. We might not always have a good answer for you but it always helped me to just be able to talk about the problems to someone. Kim, Kim, so sorry to hear that you will have to have more surgery. I am thinking of you and will keep you in my prayers. I am interested in knowing more about the surgeries you have had previously and the one in December. I was diagnosed with stage 1 anal cancer in June 2008 and my doctor tells me it’s gone, BUT I asked “what if it comes back?” Her response was surgery—a colostomy—no desire to go there. So, if you feel like responding and telling me more, I would be most grateful, as I would try about anything before going that route. Also, ironic that I lived in Indianapolis for 11+ years. IU Medical Center is a great facility. I worked for a physical therapy group in Indy and am familiar with a lot of orthopaedic docs there, but no colorectral docs. It sounds like you have an excellent one. I wish you the best and will keep checking for updates from you on how things are going.
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bo1516's Cancer Blog (8)
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Deb Wellman 
Thanks for your support -
So glad you have clear margins. Sounds like it is time for a break and time for your body to heal. Don’t try to do too much. I will pray for a speedy recovery.
Dear Kim Bo;
It must be a relief that your surgery is over and you can concentrate on getting better and of course enjoying this coming Xmas and New Year’s festivities. Hopefully you will be ready for some real food by the 25th. Your medical results sound encouraging, and with any luck your visit in March will be to say that there is NO CANCER at all. We all pray for that kind of news.
Take care and make sure you get plenty of R&R and that you make peace with your disease.
Weezie
Kim Bo ,
After all that you have been through it’s about time for some rest and a little peace of mind. I pray that you are able to get your well deserved rest and nutrition. Have a blessed Holiday !
Theresa
Kim Bo,
The anticipation is usually the hardest part. How nice that your surgery is over, and went so well. That is a great Xmas gift, better than having a tree to care for. I wish you a great recovery. take it easy. Many hugs, Gaile
Kim Bo—
That is great news! I have been concerned since you had not posted an update since your surgery. I do hope that your follow-up in March will be when you meet “NED” and that you will be recovered by then from this most recent round. It certainly takes a toll on your body, as you well know. I hope you continue to get stronger and feeling better with each and every day.
Thank you for all the information you gave me previously. I agree with you, getting on websites where you can actually exchange information with those who are experiencing the same thing is so helpful. The doctors can tell you what may happen, but they don’t know from personal experience how it feels and how much it can affect your life. We have all been there—we know!
I see my radiation oncologist this afternoon for, what I hope, is my last visit to him. I am doing well and am looking forward to spending some time with my family next week for the holidays. Thank you for asking about me.
Take care and let us know how you are doing from time to time. I will keep you in my thoughts and prayers and wish you a New Year full of good news! Happy Holidays to you and everyone else!
Martha