Thursday, March 19, 2015

Chemo, Round 4

Sitting in the infusion room hooked up to chemo drug #2.

This time I had a nurse who asked me if I wanted the dose of Benadryl they give as a pre-chemo medication cut in half. I happily agreed, as my opinion is that this is one of the major contributors to the wonkiness I experience during and right after the chemo infusion. And it is making a big difference! The insta-headache I usually get was not nearly as intense, and my body feels generally less stressed. And since lowering the dose has no effect on my reactions to the Rituxin (which is why they give it to me in the first place) this is a happy thing all around.

Another happy thing is that in a few hours, I will be 2/3 done with chemo. Woohoo!

Random thoughts I want to share for the people who are looking at this because they were recently diagnosed with primary mediastinal B-cell lymphoma and want to know the things I wish I'd known when I started:

Even if the doctor tells you your disease is "aggressive", you always have time to find the right oncologist (at least, this is probably true if your diagnosis process is similar to mine and starts with symptoms that are not life-threatening ). My insurance covered a second opinion visit, so it wasn't too costly for me to try a few different providers. Find a doctor who will answer your questions at the level you want to be educated. Find one who will listen to you. Find one who works at a cancer center that will do all the things you need in one place.

What are "all the things you need", you ask? For me, they include blood draws, PET/CT scans, the outpatient chemo infusions, and radiation. I wish I had thought to ask if the cancer center could do blood draws on-site. Mine doesn't; instead I have to go to a freestanding lab or to the hospital if I want to get it drawn from my port (but I've already ranted about that). The more you can do in one place, the less stressful it will be in the long run.

It is also helpful to bring someone with you to the doctor visits and have a second (often less stressed) person listen to what the doctor says. That way you can have two sets of notes to refer to when you can't remember what he said. Write down all your questions (chemo brain makes it hard for me to remember mine in the moment without a reminder) and keep a list in between visits. And if you're like me, take notes on how you feel (daily is best), so you can ask about anything that seems consistently unusual.

Now for some fun stuff.

Epic Pi Day was awesome this year. It's a once-in-a-century experience. Pi day (for those who don't know) is celebrated on 3/14, in honor of the mathematical number pi (numeric value 3.1415926), which is important for all things circular. Which pie, conveniently, happens to be! Our party started on 3/14/15 at 9:26 am with a fun run of exactly 3.14 miles. I walked only part of it (so I wouldn't overdo it) with a friend and then came back to help manage the refreshments and take pictures. It was a blast, and the prizes were lots of fun too - a belt buckle with a pi symbol on it for the overall winner, a pie server for the top female finisher, little Hostess pies for the top kid finishers.

(Note. It is now 5 hours later and I'm home and just getting back to this.)

That evening we had the second half of our Pi day party, which included a dinner of pizza pies, chicken pot pies, dessert pies, and a few salads and stuff to round out the meal. YUM. Good food and good conversation all around. My favorite part of the weekend, though, was getting to see one of my best friends from Boston!

Did you know there are Pi day songs? Google it!

Oh! I was going to tell you all about my PET scan, too! If you read my Facebook post, you already know it looked good. I went for the PET a week ago. Knowing what to expect made it a little nicer this time around. I had the radioactive sugar injected through my port (yay! no needle stick to my poor worn-out veins!) and then hung out for an hour or so waiting for my body to process the sugar. After the actual scan, I asked the tech if I could get a copy of it, and she said if I waited 10 minutes she could do it right then. So I did - and while I waited, I met a woman who was accompanying her 101-year-old loved one to her 5-year follow up PET for her third or fourth bout with cancer (101 years old! I think she's a woman I could learn a lot from, and was kind of sad I didn't get to meet her.) and another woman who was on the home stretch of a months-long radiation regimen. Both stories were inspiring. The second woman shared how she is more compassionate, loving, and family-oriented now that she's experienced cancer. It is super cool to see how it changes hearts and lives.

The PET results show a significant decrease in the size of my tumor (yay!) and an even greater decrease in activity. I don't have specific numbers, but the report says "only slight residual [activity] present", which means the tumor is mostly dead (double yay!). To my untrained eye (because I love to look at all my scans, even if I'm not a radiologist), it looks like it's probably about 50-70% reduced in size. It will never go entirely away (some of it is scar tissue and has become a permanent part of me), but if we can ensure it's not just mostly dead but completely dead, I should be in good shape. (That's why I get to do radiation after chemo.) At this point, happily, things are progressing as expected and looking good.

I made it to the Salt Lake temple on Tuesday night for a little spiritual boost before chemo. I have had two weeks of church meetings in a row where the message has been "go to the temple", so I decided I needed to make it a higher priority on the weeks I feel well enough to go. On the way in, I met two young adults, former companions from when they were serving as sister missionaries in New Hampshire. One of them is getting married and moving to Boston soon. So fun to make New England connections with random strangers I met in a parking garage! I'm glad I went for more reasons than that, though. There is peace in the temple. There is healing. It gives me confidence and fills my soul. And the best part for me today? When we keep our covenants, our loving Father blesses us with greater capacity to get through the tricky minutes that are to come.

So... happy things in great abundance over the past few days! Yay!

2/3 done and grateful.

1 comment:

  1. 50-70% reduced in size is FANTASTIC!!! What wonderful news! :)