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Treatment Update

I started radiation last week! So easy, compared to chemo. I am going to Lahey in Burlington so it’s quick to get there, and I got appointments first thing in the morning. That way I can get back to watch the kids for the rest of the day, so it doesn’t really impact Eric’s workday.

Bonus – I don’t have to make the kids breakfast lol. And I get to listen to Matty in the Morning on the way to radiation! 👍🏻

I have 20 total radiation treatments – every weekday for 4 weeks. No side effects yet, although I was told skin irritation doesn’t always start right away, so we’ll see. They said radiation can cause fatigue, and I’m also going through immunotherapy which causes fatigue. Plus I have two little kids to watch all day. 🤦🏼‍♀️ Soo yeah, I’m definitely gonna be tired. Send coffee ☕️ Lol.

As for the immunotherapy, I go back next Monday, and I’m hoping I won’t have any reactions to the meds this time. Cross your fingers for me. 🤞🏻 It was awful last time and I’m really hoping this time will go more smoothly.

The fun continues

So the last few weeks have been amazing. I felt great, had a good amount of energy, enjoyed seeing some people here and there (social distancing with masks of course). We celebrated Ben’s birthday, I went to my friend’s bridal shower.. life felt somewhat normal (as normal as it can feel during a pandemic). It’s been really wonderful.

Yesterday I went in for my first immunotherapy infusion. Unfortunately I had a reaction to one of the drugs. I started getting jittery and shivering and really cold and nauseous. It’s apparently not uncommon. But it took me by surprise because I’ve had this med before with no problem. They gave me a medication to help with the shaking, but that made me more nauseous and I ended up getting sick. Not fun.

What I didn’t realize is that they don’t give pre-meds for immunotherapy. When I was doing chemo, I got Benedryl, anti-nausea meds, and a steroid before the chemo, to help with any possible reactions/nausea etc. They don’t typically do the pre-meds if you’re just getting immunotherapy, apparently, but it seems like I need them. So I think in 3 weeks when I go in, they’ll do the pre-meds first and hopefully I won’t have the same problem as yesterday.

Anyway I’m just a little bummed today. It was kind of like a tease the last few weeks – feeling so good. Now I’m back to treatment. But I just keep reminding myself the cancer is GONE, and these treatments are to help make sure it doesn’t come back. Just gotta get this done.

Hair Update

I haven’t updated about my hair in a while. It’s been an interesting progression of hair loss. You may remember I used the Paxman scalp cooling cap during chemo to help reduce hair loss. I was told upfront that it works better with certain types of chemotherapy, and they don’t make any guarantees about keeping all your hair.

The scalp cooling worked great through my first 12 weeks of chemo. I barely lost any more hair than usual. During the next round of the more intense chemo, I was told the scalp cooling wouldn’t be as effective because of the stronger meds, but that since I already had the cap, it was worth a shot. I didn’t lose too much more hair during those 8 weeks either.

Ironically in the weeks AFTER chemo, my hair started coming out more and more, and I’m continuing to lose a lot on a daily basis. And although I am starting to get some regrowth, it’s going to take a looong time to get my usual length of hair back.

This is what my hair looks like now. 🤷🏼‍♀️ I wear headbands a lot.

I discovered they make fake “messy buns” and I was able to get one I love! It adds a lot of volume.

I also found out insurance would reimburse me for a wig, so I just got one today! It’s going to take some getting used to, but I like it!! I’m pretty sure my natural hair never looked this good. 😂😂

Feeling good 😎

Haven’t written in a while because we’ve been busy! We celebrated Ben’s 5th birthday this past weekend. Couldn’t have a big party obviously, but we had a few very small get togethers with friends and family.

I’ve been feeling great and it’s been awesome. 😎 I’ve recovered from surgery, and my energy level is back up to normal! 👏🏻 I’ve been able to do a lot more with the kids (which is great. And also really hard. Lol).

Of course I’m not done with treatment, though. Haha. The fun starts up again next week. Immunotherapy starts Monday and radiation starts the week after.

Immunotherapy infusions are once every 3 weeks at Dana Farber. Radiation is everyday Monday-Friday for ~4 weeks at Lahey in Burlington. Both are to help make sure the cancer doesn’t come back. 🤞🏻

The radiation may cause some fatigue and skin irritation, but shouldn’t have other side effects. And the immunotherapy may cause some fatigue and minor stomach issues, but nothing like what I was dealing with before with the chemo. So hopefully it won’t be too bad!

I gotta say, now that I’m feeling pretty good, this pandemic really sucks! 🤣 During chemo I was miserable and didn’t want to do anything anyway. But now I want to go places and do things, and we still can’t do much! How have you all been dealing with this for 5 months already?!?!? Hahaha. Sigh.

Can’t believe tomorrow it’s August. 🤔 What a weird year!

YAAAYYYYY!

I wasn’t expecting the pathology report from surgery for a few more days. But I got the phone call this afternoon and it’s FABULOUS news!

⭐️ They confirmed what they tested during surgery – no cancer in the 2 lymph nodes they took out. 😀

⭐️ I had a “pathological complete response” – which means the tissue they removed where the tumors used to be had “no residual carcinoma.” The chemo did its job! No more cancer! I was not expecting this at all and I’m SO happy! 😀

⭐️ Margins were negative which means the surgeon got the whole area she wanted. No further surgery required. 😀

ALL FABULOUS NEWS!!!!!

(I will still go forward with the existing plan – radiation and every 3 week infusions of meds til January. It’s the standard treatment for my type of cancer).

I got out the captains and coke tonight you guys!!! Time to celebrate!!!

Cheers! 🤣

😀😀😀😀😀😀😀😀😀😀😀😀😀😀😀😀

Feeling pretty good!

I’m surprised that I’m feeling pretty good today, all things considered! 😀

I was able to sleep fairly well last night. I slept sitting up for a while and then was able to get comfortable on my side with the help of a few extra pillows.

Today I’ve been keeping up with the pain meds and so the pain isn’t too bad! Under my arm hurts the most, where they took the 2 lymph nodes. Interestingly the area where they took the tumors out doesn’t hurt as bad.

I’ve been icing the whole area on and off as they recommended, and that helps a lot with the pain.

My parents and Eric are taking care of the kids so I’ve been able to rest. 😊

The hardest part is that I can’t pick up or carry anything over 5 pounds, so I can’t pick up Ellie for 2 weeks. Which I almost forgot this morning when I was half asleep and was going to go pick her up out of the crib. 🤦🏼‍♀️ Luckily Eric reminded me haha. (Good sign though if I’m feeling decent enough to even think about picking her up!)

Starting tomorrow I have some light stretches I need to do for my arm. Because they took the 2 lymph nodes out it’s a little stiff and I’m afraid to move it too much at the moment. The stretches should help.

Other than that I plan on taking it easy for the next week or so. 😊