Still waiting…

I have had many people ask me what was going on lately…. well I wish I had the answers!

This post will probably not be very entertaining but I felt strongly about writing it. I have had a few dealings with the medical system and am hoping that maybe some of you will learn something and know the importance of speaking up for themselves until their needs are met. I am still working on this skill, still learning the system, and am lucky to have connections here to help me get the best care possible.

The past month has been a bit frustrating. August marked my 6th month on maintenance chemo and I was told back in March that if I was stable on maintenance chemo for 6 months that they would consider removing the tumor in my colon. Although I was explicitly told that I was “uncurable”, I believe wholeheartedly that having my primary tumor surgically removed is a shot (my only shot) at a cure. Being a surgical candidate would actually be great news. When I brought this up to my oncologist, she acted as if we had not discussed this before and was wishy washy about it and said she would defer to my GI oncologist (who I see every 6 months or so). I had to wait to be scanned again and see what he said.

I was scanned at the end of August and everything was deemed “stable”. In the world of cancer this is great news, in my book stable sounds like “average” and it always hits me like a ton of bricks. I am an overachiever and don’t like to be told I got a “B”, I always aim for the A or as my husband would say “nothing less than A+”. Some of the wording in the report of my scan was a bit confusing and my doctor didn’t have the answers. I used my connections and subterfugelly was able to get the radiologist on the phone (I guess they don’t typically talk to “patients”) but he was very helpful in explaining his findings and reinforced the fact that what we were seeing was good news. He was able to put my mind at ease. I then asked him if there was a way to meet with him in the future to go over the results. I was a bit shocked to hear that the answer was yes if I was getting my scans done at a differently facility. Same radiologist but just different facility!? I have no problems going to this new facility. My last CT scan experience wasn’t so great and having the tech come up to me and ask me questions like “do you still have your uterus? I just want to make sure that what I am seeing is supposed to be there”! well I never heard of anyone getting their uterus removed and having a new one grow back but yes I still have my uterus thank you. I hate being a “patient”…

My next step was then to get another colonoscopy, it has been 1 year, and the lucky people like me, get to have a yearly colonoscopy. There was no way I was going back to my initial GI doctor. The only reason I saw him was that my #1 choice was on vacation when I needed the procedure done last year. I didn’t have a good experience with his office and as much as I can live with some bad bed side manners, calling a 40 year-old mother to tell her on the phone (while she is driving to pick up her kids from school) that she has Stage 4 cancer crossed the line. I am not a medical doctor so I don’t know what they teach in medical school but to me this is basic common sense. I have been very determined to never set foot in that office again.

So I tried to get established with my #1 guy who was on vacation last year. When I called his office and told them that I already had a colonoscopy done by the other doctor, I was told that this new doc would not see me. I pleaded my case as best I could to no avail. I then worked my network again, this is where I don’t know what I would do without my network and feel for others who do not have connections in the medical world. In any case, I had a doctor talk to him and he agreed to see me. I knew it had to do with something political, one doctor not wanting to “steal” another doctor’s patient, especially when they share the same surgery center but I felt that I had a pretty good case. He finally agreed to see me. I almost had mixed feeling about it though. I didn’t want to see him if he was going to see me reluctantly but then I have only heard positive feedback about him so maybe it was worth a shot. I decided to make an appointment thinking that if I had any weird vibes, I would go doctor shopping. I couldn’t get in for a month (to me it felt like years!). So I finally saw this new doctor and totally adored him. What doctor tells you “I was looking through your stuff this weekend”? He was asking me really good questions and ended up telling me that they probably had not surgically removed the tumor in my colon as they probably never expected me to be doing so well after one year. To him it was clear that it was time to remove the tumor and he questioned the need of doing a colonoscopy since it entails some risks of bleeding and perforation which would require emergency surgery. He took it upon himself to call my specialist, my GI oncologist at Shands. He even called me on the weekend to tell me that he had not been able to reach him yet but was going to do everything he could to talk to him on Monday and he left me his cell number – wow! I heard back from him yesterday and the plan is to still go ahead with the colonoscopy, they want to make sure that there is nothing new and this will give them more information for the surgery. So I guess the plan is to move forward with the surgery. I know that when they go in to remove the tumor, they will be able to do exploratory surgery and truly see what the liver looks like and make sure there is no other spots anywhere else. So this is my understanding of where I am at for now – waiting on a date for the colonoscopy, then figuring out if I need to be off chemo before the surgery and for how long. I think my specialist wants to present my case to the tumor board at Shands and possibly get interventional radiology involved to decide if there is anything to do or anything that can be done with my liver. I have so many unanswered questions and was told that no one really had the answers to my questions. Medicine is not like mathematics, the answers are not always black and white and the goal is to make the best decisions with the information that we have. I thought that by now I would have a clear plan of action but at least I feel like we are getting closer and closer. I promise to keep you all updated…


4 thoughts on “Still waiting…

  1. I am so glad you are intelligent and persistent! It seems like it would be more “textbook” than it really is. Each case is so unique and you are your best advocate. Your cancer is multifaceted and there isn’t one easy solution. You deserve the best and I am so glad you won’t settle for some mediocre doctor.
    There are good doctors out there…you just have to find them. I can’t wait to hear all about your next steps to success! Keep going….this fight is not with words….it is action! Do this!

  2. ________________________________ De : Beating Stage IV Colon Cancer at 40 À : Envoyé le : mardi 23 Septembre 2014 11h23 Objet : [New post] Still waiting… Chère Rachel, Louise et moi avons lu attentivement ton Post et vraiment, tu fais tout ce qu’il faut pour avancer dans ce labyrinthe médical. Ton A+ mérite réponse A+ et bravo pour tes efforts. Nous t’embrassons bien fort. Pierre paddleboardgirl posted: “I have had many people ask me what was going on lately…. well I wish I had the answers! This post will probably not be very entertaining but I felt strongly about writing it. I have had a few dealings with the medical system and am hoping that maybe”

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