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Sarah's Journey

Stage IV Colon Cancer

Latest journal entry

10/6/16 Hope!

Hello, My Incredible Family & Friends!

I want to start by saying how THANKFUL I am to have such a marvelous group like all of YOU. You’ve been such a big help. All your cards, notes, gifts, emails, texts, and mostly (as always) your prayers. They’ve really helped. A LOT!!!

So, here’s what’s happened. Started the FolFOX/Avastin treatment again on September 7th. It was horrid! I was so sick and nauseous for six days. I could barely get out of bed. I wanted to die. I was done. Plus, since I was so sick and spent most of my time in bed, every time I got up and walked by a mirror, all I could see was Colonel Sanders (without facial hair). That made me even madder. I was not fun to be around. It was too much. But then, the nausea slowly lifted and by day 10, it was gone. I felt AMAZING! I hadn’t realized how long it’d been since I’d felt good (3 months). I was sooo very happy. Of course, I spent every waking moment DOING things. I cleaned--I have never been so happy and thankful to be able to clean. I organized—drove my family crazy. I ate—A  lot! I lived!

And that gave me what I needed: Hope. I realized that even though the chemo was rough, I sure enjoyed how the results made me feel.

However, I was still a little scared for Chemo #2, which was September 21st. I wasn’t looking forward to spending another 6-7 days in bed. Also, the tumor marker had jumped up 139 points to 878, which was discouraging. But my Oncologist was very encouraged that I felt so good.

And, thankfully, the second chemo went really well. It was a stark difference. I was still very nauseous in the beginning, but I didn’t have to spend that much time in bed. Got lots done again. By Day 11, the nausea was gone. Loved it!

Yesterday was Chemo #3. I barely made the cut-off for getting it done because my neutrophils (baby white blood cells) were low, but I made it! Also, my tumor marker has come down 206 points to 672. Yay!

Unfortunately, I got nauseous right away and it’s still here, of course. Ick! But, by my calculations, this nasty part will be done by this next Tuesday (6-7 days total), followed by a slow ascent (6 days) to normalcy, and then completely over by day 12, which would be Sunday, November 16th. Perfect. I’ll be able to start the Feast (religious trip/celebration) with no nausea. What a blessing!

Yesterday was a strange day. I showed up for my Oncologist appointment half an hour late, so I got only about five minutes with him—I was so busy doing other things that I never checked to make sure I had the right time. Whoops!

Also, when I was getting out of the vehicle, I notice that I had two different shoes on (see picture). Splendid!

Then, in the middle of my chemo infusion I dropped my cup of water on the ground—which of course landed upside down—and spilled all over the floor. (The nurses LOVE when that happens!) I didn’t see her after that. She sent another nurse in. I don’t think she wanted to clean up any more of my spills. I get it.

However, there was one wonderful thing that happened. I was able to get genomic testing done on my cancer a month ago. This helps identify the alterations in my DNA to help find a better treatment option. Unfortunately, the mutations I have are rare, thus there are few/if any treatments for them. For example, Immunology (where you treat the cancer with your own immune cells) would not work for me.  So, not the greatest of news. However, my amazing Oncologist has found one that may work (NO GUARANTEES). However, it’s not for treating colon cancer and would have to be used off-label—which means, insurance won’t pay. And, of course, it’s super expensive. Ok…now the good news. They denied it 3 times and then, out-of-the blue, approved it!  Huge props for the awesome staff at my clinic that spent many, many hours on the phone with the insurance company. And of course, our AWESOME God who is the source of every good and perfect gift (James 1:17).  Yaaaaay! More hope.

So the plan is to continue my current treatment “to obtain [the] maximum response, assuming [I] am tolerating it reasonably well.”

(I love how he writes, “reasonably well”.) Truly the “tolerating it” is just that: “tolerating it.” Most people don’t get the response I get. They may get a little nauseous but treat it with a nausea drug and only have to deal with the tired part. Not me. I’m “rare” as the genome test stated. Bummer. I was hoping to be more well-done—or at least medium rare, my favorite.

Anyway, after that I’ll begin a maintenance treatment with this other drug. Like I said earlier, there’s no guarantee that it will work. And, frankly, after this FolFOX/Avastin treatment, there are no other real options. So, again, though small, there’s still hope, which always helps get me through the rough bits.

Well, better go back and lie down and let my body heal. Thank you for your continuous prayers and encouragement. It was pretty rough for a while (sorry for such a depressing post last time!); it’s so much better now. My good days are AMAZING! And I thank God each and every day for another chance at life. His blessings have been truly wonderful through this whole process. So many little things that could’ve gone so wrong, but worked out so incredibly well. It’s hard to explain all the good parts in such a nasty circumstance. But they’re there. Every day!

For those of you celebrating the upcoming Holy Days, I hope they’re inspiring and full of lots of joy. We’re going international this year. So excited! Have a wonderful rest of the week! Hugs to you all!

P.S. I guess I should explain the pictures. Scott & I, my sweet girls, my mismatched shoes, me during Chemo.