Scanxiety revving up…

I usually try to stay quiet when I have an upcoming scan. When I advertise them then I feel the need to report back promptly and when the news are not what I want, it is always more difficult to share. I recently was reading someone’s post on my forums and the person said something like the positive results from their CT scan made all her efforts “worth it”. This is exactly one of my biggest issue with this whole war analogy when fighting cancer. When we have positive results then we are “winners”, we have been successful in our fight but although we don’t really hear this, it implies that if our results are not good we have failed, well we have not succeeded. I wanted to reply, “so if my next scan shows growth, does that mean that all my efforts have not been worth it?” but of course I did not say anything. I have seen very “positive” people fight so hard, years of chemo, surgeries, radiation, tubes and bags coming out of their bodies, living with all the side effects of treatments, remaining hopeful and optimistic, doing all the things they could do to fight this disease and not make it. In my mind, these people have not failed. They have my utmost admiration because I know what it’s really like to live with this disease on a day to day basis. I know what it’s like to put all of your energy and efforts into your healing when you don’t even know if what you are doing will help or could even make things worse. Unlike many other diseases, being ultra vigilant about your diet, supplements, exercise routines and all is no guarantee that cancer will stop growing and leave your body.  As much as I wish we could say we can “control” this disease, we have no control. There is NO way of predicting who will make it and who won’t and the amount of effort and energy you put into it does not correlate with “success”.

Every scan is stressful. When you have stage 4, you typically get scanned every 3 months. I used to think that a scan meant something as innocuous as an x-ray. You lie on the table for a few minutes while a machine takes pictures. Well I wish that was the case. For a typical CT scan, you need to fast for a few hours, drink a nasty barium contrast that wrecks havoc in your gut, then an IV is started to inject you with another type of contrast. After years of chemo, your veins start to be pretty beat up (and my chemo port cannot be used for contrast, one needs a “power” port – I am not sure why mine isn’t, maybe they only came out after I had mine put in?) but in any case with the wear and tear of my blood vessels, the contrast typically burns and then it gives you the sensation that you are peeing your pants. Did I mention that while you are lying down, both of your arms have to be hanging above your head so your hands get to be tingling and numb after a few minutes. Then we have to be as still as possible and hold our breath while the machine is taking certain pictures… so a scan in itself is pretty involved. Not to mention the lovely explosions that often follow as the barium contrast makes its way out… I know probably tmi for most but I thought you’d love to know more about the things you usually don’t hear about scans… So as I said, every scan brings some anxiety but certain ones bring more then others. This upcoming one is another big one. I “should” be done with this cocktail and this means that the results will guide the next steps for me. I am trying to not let my mind think about it too much. If there is still active disease, I am pretty much out of options, perhaps they would recommend a few more infusions of the cocktail that I am currently on but you can’t stay on it too long because of the severe side effects. If there are only a couple of spots that are active, my new BFF, Dr. D. (the interventional radiologist) might be able to zap them with an ablation. If maintenance is all I need, I hope to get on the chemo pill that was just FDA approved. I will need to start looking more seriously into clinical trials. A couple of immunotherapy trials for my type of tumor have just begun, I am hoping to buy some time and see what kind of results people are getting. I know someone who had a fresh tumor tested through a private lab in California. She has colon cancer and was told that a combination of breast cancer chemo drugs could target the specific mutations in her tumors. She lives in Canada and was able to get access to the drugs (not sure we could do this here in the US – insurance companies don’t typically pay if it is not “standard of care”) – but in any case, I think this is very exciting and I am keeping this possibility in mind. I can only imagine how much it costs to have these tests done, it would be worth it though if I could be assured that the drugs they come up with would be covered but if not, then I am not too sure what the options would be. This is basically what the fruit fly study is about but I still haven’t heard from them, despite my weekly attempt to contact them… and once I am in, it could take up to one year to get to a cocktail but the cocktail would be provided to me at no cost…

I had a great time in Arizona for the colon cancer conference organized by the Colon Cancer Alliance. I made really good contacts and hope to be a “real” speaker next year. I sat on a panel and held a meditation session one morning and got to meet incredible survivors. You know you are at a cancer conference when the first thing someone tells you is “I am so jealous of where your (chemo) port is, look how mine sticks out”! Far from wow I love your dress, or your nails, or your shoes! It is always inspiring to hear stories of people who are ahead of me and who are now NED. Believe me, I ask them what they did or did not do and I wish I could tell you the recipe but clearly there is none…

I am headed to my last infusion on this cocktail this morning. Wish we could have an end of chemo party but I know too well that treatment doesn’t end here for me… that’s the nature of the stage 4 beast…. one day at the time…

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4 thoughts on “Scanxiety revving up…

  1. I am so thankful that you were able to go to the conference in AZ. Being around all of those people who “get it” has got to be comforting. Your friends can only comprehend so much despite your incredible efforts to convey the journey. We can sympathize all day long but we don’t really understand. We never will….unless we walk in your shoes. And even then, no two scenarios are ever alike. But being around people that have a port that sticks out, or doesn’t, has to be comforting to you. Knowing that someone understands must give you a bit of relief. I am glad you have that forum. You are all winners in my eyes and I admire your strength to fight this uphill battle. NED is the ultimate goal, but even those that don’t achieve it are heros. NEVER ever GIVE up! NEGU….

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