Treatment sucks…. When I look at what I’m going through, I tend to think, it’s not as bad as someone who has to endure chemo and radiation. My side effects aren’t debilitating at this point. While I think all that is true, at the same time, the side effects I am managing on a daily basis are still hard and they suck. I think sometimes I don’t even realize how bad it sucks until I really have to think about it because we just push through, you know?!? Life doesn’t stop because I feel crappy. I know a lot of you mammas out there know exactly what I am talking about. You don’t stop being mommy because you’re sick… No. You still take care of your kids, your house, your job, whatever is on your plate you handle it as best you can while being sick. Dad’s don’t get bent out of shape… (most of) ya’ll are babies when you’re sick and you know it – you have many strengths, but this isn’t one of them. Just own it. ;)~

When people have been asking how I am doing, I say enduring – as in “to endure”. Some days are better than others but I don’t want to say I’m “surviving” because I’m not just getting through it. God has purpose in this. His glory is/will be shown in this. He is strengthening me to do more than survive and I want to, and am trying to, suffer well.

Side effects so far: Pineapple tongue, body rash, tummy upset (bloating and stopped up AND/OR diarrhea and the sore toosh that comes from that – sorry for the TMI), fatigue, moodiness, emotional numbness, foggy brain, noise sensitivity, temperature sensitivity, inflammation, body and joint aches/pain, injure/bruise easily, etc… — not all side effects are constant. Some come and go and I am working to practically manage them…

• I am fatigued and by about dinner time ready to crash most days – there are some days I can’t make it through the day without a nap but that’s not too often thankfully.
• The tummy issues cause discomfort and a change of plans some times and mending the physical sores and such that a lot of bathroom use causes (I am trying to not give too much TMI here, lol).
• The pineapple tongue is managed by avoiding certain foods.
• The rash was all over my body but mostly affected my left side and back, that was remedied with a cream. My skin pigment is messed up from where the rash was – I am hoping that’ll resolve at some point.
• Moodiness, foggy brain, and emotional numbness are managed with rest/naps and vitamin supplements.
• Noise sensitivity is still one that I haven’t figured out how to completely manage very well considering I have 3 littles who are soooo noisy!! Ha!
• Temperature sensitivity – this is fairly simple, not always easy, to manage… heat is the sneakier one as feeling overheated can come on somewhat quickly sometimes. I try and cool off as quick as possible if I am getting overheated or if I am cold grab a sweatshirt and blanket.
• Body aches, inflammation, pain, bruising, joint pain – managing this is still a work in progress. I take a large dose of turmeric curcumin which does help and I started getting a massage once a month, but I still need to figure out a better solution. My body hurts just about all day every day – some days its more achy than others. If I do anything “strenuous” or above “normal” activity it sucks so bad… Here’s an example:
  • We went on few day vacation to the beach. We went to the beach two of the three days and the waterpark the other day. For the beach days; I walked on the sand carrying a chair – Kevin managed the beach cart/beach bag, etc… and the kids carried some things they wanted. On the beach, we chilled, the kids played, Kevin and I sat and watched, etc. Easy, I didn’t swim and have to deal with the crazy waves and current or anything of that sort. At the waterpark; I went on two of the slides (sitting in an inflatable tube) then just chilled the remainder of the time as the kids kept going on the slides. I was not sitting the whole time, so, it’s not like I was stiff/causing issues because I wasn’t moving. We’re talking “normal” activity all three days. Nothing strenuous at all. My hamstrings, hips, lower back, knees, ankles and feet hurt soooooo bad! My muscles hurt like I did several hard core leg days and in addition to my muscles hurting, my joints hurt, too. I am pretty discouraged with this one because I need to be somewhat active – we all do. It’s so good for us not only from a physical health perspective, but emotionally, and even spiritually.

The body pain one was pretty long, sorry, that’s one I am dealing with as I sit here and write. To answer some questions you may have regarding the body pain:

• No, I won’t get my medical THC card. For me – this is my conscience and has nothing to do with others and their conscience – I won’t take THC. It’s not for me and I believe God will provide something I can take.
• I am not opposed to non-THC CBD supplements or such, this is on my list to research.
• I have tummy ulcers from taking too much Ibuprofen from the first time I had treatment and experienced body pain – so I take ibuprofen very sparingly and it doesn’t alleviate the pain.
• Tylenol doesn’t help.
• Heat, stretching, and massage help some.
• Turmeric curcumin supplements help some.
• I have tried Boswellia and Tart Cherry (said to be natural pain remedies) and they have not helped.

Sorry for a longer post this time around… but that’s what it going on. I have my next treatment this coming Tuesday, 8/23/2022. Then sometime in the beginning of Sept I should have my post 4th treatment scan. We are hoping it shows that the tumors are continuing to shrink. I will def keep you posted.

Thank you for praying and continuing to pray!

With Love,

SP

You are loved and you are chosen. ❤