3.29.24

A lot has happened over the last month. I’m healing nicely from my revision surgery!! I’m happy to say it never got as bad as I thought it might!! A huge answer to prayers!! I think this was the first time it actually wasn’t as bad as I thought it would be. So that was nice. I can officially sleep on my side again. I’m so thankful for that!! In case you didn’t know sleeping on your back for 4 weeks straight is highly overrated! And, I don’t have to wear my compression garments anymore!!! WAHOO!!!

Thursday (3/28/24) was a big celebration day for me! It has been one year since my last chemo!!! That’s the day the doctors considered me “cancer free”. Actually, I think the correct term is no evidence of disease (NED). And if I’m being honest, that is easier to say than cancer free. I don’t know if I’ll ever feel comfortable saying I’m cancer free. I know there are many women that have had breast cancer and are 10, 15+ year survivors. I don’t dwell on it. However, it’s hard to not wonder if/when it might pop up again (locally or metastatically). I don’t know that it gets easier, you just learn to adapt… Earlier this month I was struggling with how do we know there’s no evidence of disease. I have not had any kind of scan to say one way or the other. On one hand it’s a good thing. My cancer was caught so early that a scan isn’t part of the protocol and my doctor said that he wouldn’t recommend one plus he also said insurance wouldn’t pay for it. On the other hand even if I had a “clear” scan doesn’t mean there isn’t cancer… We learned that the hard way with my MRI. (It didn’t show cancer in my lymph node even though there was a microscopic dot.) Every three months I get labs done and they monitor my LDH (tumor marker) and my liver functions. Also my oncologist still wants me getting yearly mammograms so if anything starts to come back locally we’d hopefully catch it early with that. They said the biggest indicator that something might be up is how I feel. If I were to start having symptoms or feeling off then they could do more tests to check into those symptoms. Right now I feel at a little disadvantage since I’m still trying to learn my new normal.

One thing I’ve learned about myself over the last year and a half: it’s easier for me to talk about something once I think I have it “figured” out. I’ve been struggling since I would say at least November with my emotions. Some days are better than others. I just keep waiting to feel normal again. And it’s not happening. Then the other day (last Friday to be exact) I had this ah ha moment. I don’t remember where I read it but I saw this comment that said don’t think you don’t have any side effects. (Pertaining to my research on Tamoxifen side effects.) It seems like most women who take Tamoxifen, if they are going to have side effects, its awful joint pain. Like they can’t get out of bed kind of pain. I have yet to experience that. Thank you Jesus! I just assumed since I wasn’t in pain I wasn’t having any side effects. However, some of the less talked about side effects: depression/anxiety and mood swings. I don’t know that I’ve experienced anxiety (yet) but I would say yes to the depression. I get in these funky moods where I am just down and out. I cry a lot. And I hate it! I am crabby a lot. And I hate that. Some days I have to work really hard at not being irritated all the time. Seriously! I’ll be giving myself a pep talk: Cassie don’t open your mouth you are just going to be mean. I’m embarrassed to say even the kids notice it. I know this because they have told me: “I didn’t want to make you mad.” more than once. Tamoxifen causes brain fog which is something I’ve been dealing with! (I thought it was chemo brain but now I don’t know.) And headaches. I’ve noticed those more this month and even had like a 3-4 day stretch. I used to get headaches a lot growing up so I didn’t think too much of it other than that’s weird because I haven’t had much for headaches since starting chemo (I think because the chemo put me into menopause.) Vision problems are another one. Sometimes I feel like my eyes have a hard time focusing. I just can’t tell if it’s because I’m tired, if it’s my contacts, or if it’s the Tamoxifen (That happens mostly in the evenings). Fatigue is another side effect. Some days as soon as I get up I just want to go back to bed. So that’s been a little rough. Especially with kids at home and homeschooling… As you can imagine, fatigue and irritability are not a good combo. Prayers for patience or to show grace for me and for the rest of the family would be appreciated. As far as the joint pain side effects: I have noticed a couple things. If I sit for too long I’m a little slow to start moving. The other night my hips ached for a few a little bit, it was like a sharp, stabbing pain in my joints. It kind of reminded me of restless leg syndrome- where you just want to move to make it go away. I’ve had a couple of different days where my wrist has ached for a little bit. I don’t always associate the aches and pains with my medication, I mean I am getting closer to 40 each day. 😉 Given my little “revelation” it’s possible I’ve been dealing with more side effects than I realized. Oh, and while I’m listing side effects, this one I have been dealing with since I started taking it: my tongue and mouth feel weird, like someone has taken a scraper to them. It’s not painful or anything it just feels weird. I ended up messaging my doctor about it the mental side effects I think I may be experiencing. I would have talked to him at my last appointment but I hadn’t connected the dots at that time. We have a follow up appt schedule for mid April to go over my concerns. It’s hard because I don’t know if my side effects are medication related or if it’s hormone related as in menopausal symptoms because I know they are similar. Boy can life leave you scratching your head sometimes! But just for the record, I feel more like myself than I have in a long time! I have no idea how I flipped the switch but I’m glad it’s switched. 🙂

I had my 11th Lupron shot (3.12.24). It’s weird to think that I’ve been getting them for almost a year! Every three months I get lab work done and meet with my oncologist before I get my shot. At this last appointment we talked a little more about having my ovaries (oophorectomy) removed. He had recommended I do that last fall but said there was no rush. And then he told me that he is leaving Marshfield Medical Center. This doctor has been with me, with us, from the very beginning. I am so sad to see him go. We have seen God’s hand through all of this, His guiding and answers to prayer. I do think I got the best care I could have with Dr. Naqvi. That God used him in my cancer journey. We got a letter the other day recommending two of his colleagues for my future care. Whenever I’m sad about Dr. Naqvi leaving I remind myself: He was the doctor I needed for the first part of my journey and whoever I end up with next will be the best doctor for this next leg of the journey. It’s still hard to see him go…

Monday (3/25/24) I had a consult with an OB/GYN. We discussed a complete hysterectomy verses an oophorectomy. Long story short: I have an increased risk of developing uterine cancer from Tamoxifen. After talking with him it sounded like it wasn’t uncommon for women to come in 8-9 years into their Tamoxifen treatment with bleeding or some other type of concern where they have to remove their uterus. And since the goal is for me to be on Tamoxifen for 10 years having a complete hysterectomy seems to make the most sense. At least I won’t have to worry about cervical, ovarian, or uterine cancers popping up down the road… Plus no more Lupron shots!!!! We went from yeah I should probably do that and we’d like to get it done this year to it’s happening in two weeks!! I’m scheduled for surgery April 10th. What better way to ring in my last year in my thirties than another surgery haha! (My birthday is the 9th.) He thought it would take about three hours, it’s typically an outpatient procedure so that will be nice! It will be done laparoscopically but he’ll be using a robot. I guess the robot is over me and then he uses a 3D monitor to see what he’s doing. By using the robot it saves on his back, he doesn’t have to lean over me to do the work. It’s so crazy what they can do! I’ll have 4 small incisions on my abdomen. I won’t be able to lift more than 12-15lbs for 6-8 weeks. I’ll have a follow-up around 4 weeks post op, depending on how everything is healing I could possibly get the green light to do more.

All my layers! I have a shirt under my compression bra. The bra was really tight and dug in. I was supposed to wear it 24/7. I could only take it off to shower. The shirt helped with the sore spots I would get. My binder. Some type of compression shorts. And then my sweat pants.

I came home with some visible sutures. I messaged about them and my nurse said we could clip them if they were bothering me. I tried. It was surprisingly hard to cut. So I had Aaron try. I’m surprised I didn’t get hurt from all the laughing. You try laying still without laughing while your husband is saying good grief while he is trying to clip a suture at your hip. He couldn’t believe how hard it was to cut too! (I think we were both expecting to clip it like fishing line since that’s what it looks like.) Needless to say we only did one. And I decided to wait with the rest until they just fell out/ I could pull them out.

I have yet to cut my hair on the top. I want to keep that to see/show how much my hair has grown since my last chemo.

This poor kid has the worst luck with the dog! This time he got in the way when Tucker’s favorite human (Aaron) came home from work.

My sutures finally came out! The one we tried to clip was sticking out a little (it felt like a whisker haha!) and when I noticed that the part sticking out was longer than it had been I pulled on it and it just came out! So I pulled on the other ones and they just kind of came out. Yay!

I’d like to say he was doing this for his mom. But the truth of the matter is: His cousin had pink shells and he thought it was cool so he wanted some too. 😉 🙂

I finally went to one of the support groups that my physical therapist holds for women who have gone through breast cancer. I wasn’t sure what to expect. Actually what I was expecting was to go and all the women there were going to be way older than me. There were like 7 or 8 women in there and I think about half of us were around my age.

At my last appointment we had talked over my fatigue. Some days I just want to climb right back in bed. I am so tired. Dr Naqvi encouraged me to walk (which I had not been doing as well as I should have been.) So I’m back at it. Trying to walk a couple miles each day. And I do think it helps. I think it has helped with my mood as well. 🙂

My consult with the OB/GYN ended with an early lunch at Culver’s before Aaron went back to work.

We went out to celebrate my one year mark.

No Evidence of Disease.

March 28, 2024

But I trust in your unfailing love; my heart rejoices in your salvation. I will sing the Lord’s praise, for he has been good to me.

Psalm 13:5-6