I shared an update previously on my Instagram but for everyone who may not read that, here goes an update on my current treatment.
Genetic Testing Results
I met with a local genetic counselor at the cancer center who counseled me on getting genetic testing done. If I did have a gene mutation that predisposed me to this cancer we needed to know what it was. This meeting really made me uneasy because throughout the whole meeting I mostly got the gist that she was pretty sure I probably did have some sort of gene mutation and she went down her PowerPoint of what they could all be.
Turns out when I actually got the results back they were … negative! No mutations found at all. I brought the results to the Genetic Counselor at MD Anderson and had her go over them. She didn’t know why the other counselor was so sure I had a mutation but said that local counselor probably doesn’t see as many cases of young cancer as they do at MD Anderson. The counselor just put my mind at ease that I had no mutation and said I fall into the 70% of people who sporadically develop colorectal cancer. Meaning that most people (70%) don’t have a genetic mutation OR family history of it, it just happens.
After I completed my four rounds of FOLFOX IV chemo, I did both an MRI and CT scan at the beginning of March to see the progress of treatment. The scans showed that the tumor was responding to treatment and shrinking. Good news! There was also mention of two spots on my lungs (previously known about) and a spot on my liver. To say the least, I was shocked when the surgeon started talking about them. I was under the impression that the lung spots were totally unrelated to the cancer. They said the liver spot was so tiny it was “indeterminate”. After further discussion with the oncologist, the consensus seems to be they are likely not cancer related and nothing to worry about. Both the surgeon and oncologist agreed that we should move forward with radiation treatment and rescan after radiation. I also had my brother and his partner (both radiologists) review the scans. They agreed the spots were not related to cancer. This was weird for me, but I guess apparently people can just have these spots even if they are completely healthy and they are nothing to worry about. My oncologist jokingly told me to let him do the worrying, if there was something to worry about he’d be up at night about it. Right, ok.
I began radiation treatment on March 18th. The first two weeks went off without a hitch. I got cocky and totally thought I would breeze through this part of treatment. By the third week reality began to slowly set in. I began feeling nauseous, couldn’t eat & was very weak. After meeting with my radiation team, they switched up my nausea meds to see if that would help. After a few days of the new meds I was feeling pretty much the same.
This past Monday I moved up my weekly visit with my oncologist because something else had to be done. I spent the appointment in tears describing how horrible felt. They assured me they had an arsenal of tools and that we’d find something to help me. They ended up prescribing me seven days of steroid pills to help with nausea and appetite and then admitting me for IV fluids to help with dehydration. I literally feel like a new woman after all of that.
So currently I am a little more than halfway through radiation treatment. Thank the lord because I don’t know if I can take much longer of it. When radiation is complete they let you ring this bell to signify this part of treatment is over. It doesn’t mean necessarily that I’m done with all my treatment, but this grueling round of treatment will be over then. I wish I could just take a sledge hammer and smash the bell into a million pieces. Is that too much? Because I sure do have a lot of emotions pent up and I think it would help.
There is a woman who has radiation right before me everyday. I heard blips of her story from one of her sisters who was in the waiting room. One Friday I ended up having a long conversation with her sister telling her all about my story as I waiting for the techs to call me back. The next Monday as Gwen got out of treatment, she sat down next to me. She said her sister told her my story and she prays for me every night. Of course the tears began to fall (it doesn’t take much these days). Then she went on and told me, “You WILL beat this. When I was diagnosed with mesothelioma SEVEN years ago they gave me anywhere from 9-18 months to live. THAT WAS SEVEN YEARS AGO. Look at me! I had a relapse this year but I went SEVEN years cancer free. You will see your children grow up, I know that for sure”. I mean do I even have to describe the waterworks here?? Her sister was crying so much she had to walk away, I was a mess and Gwen just grabbed her stuff and told me to hang in there as she ran after her sister. I don’t know much about Gwen other than she finishes her radiation treatment April 12th and she needs to get on a plane to go back to Idaho to see her daughter go to prom on Saturday the 13th. So if you are the praying kind, keep this wonderful woman in your heart. I will probably see and speak with her a few more times before she leaves, but I always enjoy talking with her. I think of her and pray for her often.
That’s one thing that astounds me every time I walk around MD Anderson is how much cancer affects everyone. I never thought in a million years I would be the one with cancer. In fact, it still kind of feels like a dream. Like it can’t be really happening. In fact, earlier I logged onto my patient portal to look something else up and saw they have already scheduled my follow up scans for June 11th, meeting with surgeon June 12th and the big surgery date for July 23rd. I was stunned because it all seems to be happening so quickly. Just thinking about the surgery gives me anxiety. For those not in the know, that’s correct, I haven’t even had the surgery to remove the tumor yet. They wanted to do treatment beforehand to see how much it would shrink to make treatment and surgery easier.
So the rest of treatment (for now, as I understand it), looks like:
-finishing up radiation on April 24th and lighting the bell on fire and smashing it into a million pieces
-follow up scans and appointments June 11-12
-Big surgery scheduled for July 23rd
-“clean up chemo” will happen at some point after surgery but I’m not sure when (or where geographically) I will choose to do this.
So all in all, there is your update. I apologize for the lapses in updating, its easy to get bogged down with all the side effects and what not.
Lache pas, my friends.