My First Oncologist Meeting

Overall, it was pretty uneventful. Nothing ground breaking was introduced, and no start date was set. Mayo had failed to send my files on, so they made copies of mine to review. My doctor had the summary of everything that happened, but wanted to fine comb through the details.

Here’s the general facts:

General Treatment
Lasts six months, with treatments every two weeks using the FOLFOX approach. There are three medications involved: leucovorin, fluorouracil, and oxaliplatin (the big one). The biggest health concerns are limb numbness (most cases it goes away after treatment), mild-severe hair thinning, dehydration (in my case, she would basically allow me to get fluid treatment whenever I feel necessary due to dehydration also being caused by my surgery – a double whammy), and low blood counts (fatigue, weakened immune system. I have to avoid babies during treatment, sorry Austin and Katy! I’ll have to soak up the cuteness and get my fill this week.)

Treatment Time
It is strongly recommended that a chest port is put in. This plug lives under the skin, and has a catheter that runs into blood vessels near my heart. This is beneficial for a variety of reasons including eliminating the potential for the drug to leak into my tissues which would cause a lot of damage, and allowing me to receive treatment remotely when I receive the 48-hour cycle. According to my doctor, people wear fanny-packs all the time so it won’t be noticeable. šŸ™‚

The biggest benefit to me is that they won’t have to run IVs and attempted to draw blood from various veins every other week. All my treatments and blood draws will come from my chest port, which starts with a plug they poke the needles directly into. My bruises from my hospital IVs from three weeks ago are still healing.

The first three treatments, my doctor wants to see me on person to ensure everything is going okay. After that, I can opt to receive treatment at St. Elizabeth’s in Lincoln. I probably won’t decide until I can gauge what my recovery will be like.

Clinical Trial
There is one trial I may be eligible for, after my doctor fine combs my files. In short, it would cut my treatment down to three months, as opposed to six. However, the side effects may be worse during treatment, but my recovery and long term effects would be cut since I was under treatment for a shorter time. This would also help ensure I can continue the entire duration of treatment, as many peoples bodies can’t endure six months and have to end treatment early.

But, it is a trial. What if three months isn’t long enough and I go into remission and have to do the entire six month treatment anyway down the road? The treatments are a little different, and what if they aren’t as effective in my case? Do I really want to take that gamble? When I asked what the biggest benefit of doing this would be, she responded “it’s best for the health care industry.” Not really the glowing recommendation and confidence-building answer I was looking for.

I think I’m just reaching decision-making fatigue. Every choice seems like it has so many consequences or unused opportunity. I mulled over the surgical procedure for weeks before picking one an hour before they put me under. I’ve met with do many doctors and just get the same information fed to me over and over. I just want to have all these choices picked so I can start.

Speaking of starting, she is leaning toward waiting until closer to my six weeks post-surgery. This makes me nervous, but I do understand i need as much energy, stamina, confidence, and strength as I can possibly get. I have been so concerned about how fast this developed, but she did a great job putting those fears at ease.

Colon cancer is very slow growing. So much more could have been going on beneath the surface than what the first colonoscopy revealed. Even other surgeons told me that – there is no way to stage this cancer until it is out and can be examined. The lymph nodes could have been involved much sooner, but since nothing has formed yet, this is a good sign.

I didn’t realize how much I was relying on my own conclusions and assumptions.

We didn’t talk too much about her preference in monitoring growth or lack there of. I have mayo’s recommendation which included blood testing every three months for five years, as well as CT scans every six months.

I’ve decided I need to “bulk up” and build as much stored fat in my body for when I start chemo. Over and over i hear that it’s hard to eat and my energy will be so low.

Surprisingly, building up this weight has been tough. Since my first diagnosis in April until now, I’ve dropped 25 pounds. Hi there, high school weight. After my first week back home, I gained three back. As of yesterday, and after a week of eating my aunts pies and cookies, I dropped off those three again.

I feel like my most pressing needs on a daily basis are where can I sit down next, and when can I eat again. I have to eat at least every two hours. And not a small snack. Yesterday noon until dinner I ate an enchilada, a CLIFF bar, three chicken strips, 2.5 pieces of pizza, and a bowl of ice cream (I juiced in the morning, so I got my veggie dose!). I woke up starving this morning.

Not that I’m throwing all caution to the wind and eating the most caloric foods and fattening, though yesterday kind of seems like it. I’m finding balance in my meals, but am trying to absorb as much nutrients and calories as I can to continue healing and so my body is prepared.

Plus, it seems like eating will be my enemy for a while, so I might as well enjoy it while I can!

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Author: Clarissa A.

The older I get, the less I know.

6 thoughts on “My First Oncologist Meeting”

  1. Hey Claire. Make sure you get plenty of protein in addition to calories. Unfortunately, having cancer in your body means that you needs even more calories than you did before you had cancer just to maintain weight. You can try some of the commercial supplement beverages (ie: Ensure or Boost – or make it into a milkshake daily and drink it). Or if you don’t like the content of the Ensure, make your own high calorie/high protein drinks. I can send you recipes if you can’t find something you like online. All different types of Ensure — choose the one that gives you the most calories. I think Ensure Plus has about 350 calories and 13 gm protein per serving. But you can make your own too. If you are already eating a lot and losing weight, high energy/protein drinks may be the way to go as they usually pack a lot of nutrition in a smaller amount of volume and may not fill you up as quickly. Keep your chin up!

    1. Thanks for the tips. I found someone who went through almost the exact thing I’m going through, and she suggested protein shakes from like a nutrition stir vs. the Ensures and Boosts for less sugar, which I tend to agree with. What are your thoughts on that? I assume a lot of types of beans and canned fish products will be in my future! Any other recipes you have to share would be appreciated!

  2. Sounds like you are passed the denial stage and in the take charge stage. Stay there. That is great! I think of you often.
    You are allowed to have your own copy of your med files. Just in case you need them, traveling or maybe in need of ER care?
    Do you have diet restrictions? Or can you eat anything you want?

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