Hello friends! Thank you to everyone for checking in - whether it be directly via message or a comment on a post, none have gone unnoticed, and I’m grateful and appreciative for each and everyone of you.
I’m likely not going to be doing daily updates through this cancer journey. I’m keeping a lot more of my philosophical thoughts on life and personal growth to myself this go ‘round. Scleroderma has been a hard journey over the past 20 years, and I have shared every step of that process with my tips and tricks for what I think we should be getting from or giving to life. With a new “incurable” diagnosis that has a more tangible feel to the timeline than anything with scleroderma ever has life is just different now. I have new things to learn, and to give back to the community/in different ways. “Quieter” ways, so let’s see where that takes us on this journey.
Week one infusions were challenging to say the least. Scratch that, not challenging for the infusions, but the side effects in the after. I’m not doing chemo or radiation, but the cancer-fighter infusions hit very similarly - On top of what is just going on in this body, in general. Mouth sores. Those are new to me. They suck, but good teething gel has been a gift! The exhaustion has been some thing that I was not prepared for. Nor can you really prepare for it. Anyone that has lived with chronic fatigue and exhaustion knows that just when you think you’ve felt it as bad as it can feel. It somehow can manage to get worse and we can also somehow manage to get through that. Not going to lie and sugarcoat it and say that it’s easy and that I just always find the light at the end of the tunnel. Because I don’t. In the moment of things being harder than I expect them to feel, or harder than I think that I can get through - I cry. I cry a lot. And I say things like “I don’t know if I can do this.” Or even “I don’t want to do this anymore.” These are emotions and sentiments not lost on any of you, I am almost 100% rest assured in that. With that said, it was hard, I cried, I didn’t want to do it anymore,…
And yet here I am.
I just finished week two of infusions. Week two started out almost as badly as week one with fatigue, exhaustion, and the inability to get an IV. It took two separate days because after day ones numerous unsuccessful attempts, we decided that it was not going to continue for the day and we will try again the next day. Then i went home and I cried. I cried a lot. And I said things like “I don’t know if I can do this.” Or even “I don’t want to do this anymore. And we’re barely even started!!!!”Fortunately, we were successful on Day 2, Week 2 after just a couple of attempts. However, the infusion staff, and myself have always had it in our mind that we would probably move towards a port installation at some point. This is going to be a continuing process over who knows how long and this would just make life easier for everyone.
Today is “Week 2 - The Day After”. I actually woke up this morning a little energized, and for the first time been able to sit in the sunroom and reflect and watch the horses and be where I needed to be. It’s the first day I felt human/semi-normal since before Thanksgiving. So today I am enjoying the day of feeling alive and human and doing what I need to do to keep moving forward.
I see the primary care doctor tomorrow so that we can start coming up with a formula For this gaping hole that is in my hip. I have no idea what that is going to look like, and to be quite honest I’m a little scared. However, there’s no point in putting too much other emotion into it until I get there tomorrow and we are able to talk.
I will also be meeting with someone over the next week or so to discuss or even get started the process of getting the port placed so that going forward treatments are smoother and way less dramatic, and stressful.
Doing all we can to keep me persevering through this next thing.
Rock on.
💋🤘🏼
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