So yesterday was Thanksgiving and it was a lot of fun! We always go to Eric’s parents’ first to be with his family then head to my parents’ to be with mine. And, yes, that means two Thanksgiving dinners and no cooking for this girl!! Haha, best to leave it in the hands of professionals anyway in my opinion (; It was a great day filled with food and thankfullness, and one very specific question, “How are you feeling?”. Don’t gete wrong, I don’t resent the question or anything, but I had to pause every time this question was asked because the truth is I don’t really know. Before all this, that was a no-brainer, “Fine!” I could say enthusiastically and truthfully. But now, people really want to know. So how am I feeling? Physically, I feel exhausted and sore. Still grappling with the after effects of major surgery, I find my right arm almost completely useless besides the hand. There is no strength in it and I still can’t lift anything because my shoulder gives out. My face is swollen and tingley and I can’t open my jaw even half as wide as I could before surgery. My left thigh, the spot where they took the flesh from, continues to be the most physically daunting part. The drain is out – woohoo!! – but the pain is deep and constant. I continue to lose weight from lack of appetite and the aformentioned jaw pain. I also feel tired all the time. I’m not complaining, just trying to figure out how to answer the question. On the other hand, there are people that have it a lot worse, and if I didn’t keep that in mind, it’d be easy to hop down the self-pity bunny trail. God never fails to remind me of this every time I start to feel bad about myself. And I see people whose kids are seriously sick or hurting and I’m reminded that I would not be able to deal with that on any level. So I’m deeply thankful to God that that is not the case.
Emotionally, things are really up and down. My dad described it perfectly. He said, “Do you feel like this too?” and he took his finger and drew a line in the air with high tops and low valleys. Yeah. That’s exactly it. Some days, I feel so confident and upbeat about all this, other days I’m more pensive about what it all means, and then there’s the low days. They come and go and are a normal part of the process, but without wanting to sugar-coat any of this process, the low days really suck. It’s hard to get out of that groove but I often try to any way I can because that is not my “set point”. I am a naturally upbeat and positive person, so that is where I prefer to be.
We met with the radiation oncologist on Wednesday and were dealt a blow that I’m still trying to shake. We can’t get treatments locally. But there are upsides for sure! Treatments will only be 4 weeks, not 6, and I may be able to get a new treatment called Proton Therapy. It’s apparently the same idea as radiation, but there is a stop point on the beam, so that radiation only passes into the desired area, not all the way through my head and neck. This is amazing for several reasons, it will decrease the symptoms associated with radiation on the head and neck and it will also greatly reduce my risk of radiation related cancers. Apparently, that is something that can happen, that radiation can actually cause cancer, and since I’m young(er than most people in this situation), my risk for the radiation related cancer is much higher. This is why we are rooting for that and why I am asking you to pray for this situation and that God’s will will be done in my treatment plan. There are only 10 places in the whole country that offer this type of treatment and Penn is one of them. Well what could stop me from getting it, you ask? Insurance. Since it’s such a rare treatment, it’s still classed as “experimental” so my insurance has the right to deny it. I’m not gonna go off on a tangent about the evil health insurance system or anything like that. Our insurance has actually been really great through all this, even though I am pretty much their worst nightmare! So, I will pray that whichever treatment God wants me to have, that’s the one I get, even if it does seem less desirable through human eyes. So I go back Thursday for a dental appointment (apparently radiation can really mess with your teeth…or something. Didn’t quite understand that part) and then Friday to get fitted for the mask I have to wear during treatments and get a CT scan. Treatments will then start about two weeks after that.
So we are grappling with how to logistically work out getting to and from Philly every day for a month in the dead of winter, childcare, and what this all might look like. It’s mentally exhausting to try to figure out but we will get through. I keep replaying in my head our first trip down to Penn to see my oncologist. The very first appointment that started this whole process. I wasn’t paying any attention to what was going on in front of me, but as I was waiting to check in at the reception desk, the woman in front of me suddenly got visibly flustered and turned away from the desk mumbling, “I doesn’t matter. I’m dying anyway!” I will never forget her face or voice. This woman in this snapshot of her life made an imprint forever on mine. She clearly had no hope. She was broken and sad and scared. She is my reminder of why I am going through this. I am confident that I will meet someone along this journey that needs the same hope and peace that I am fully relying on. My hope is not in doctors or medicine. If it were, it would be greatly missplaced. Doctors are only people too and medicine can only do so much. Don’t get me wrong, I’m grateful that medicine is where it’s at today! But we will all die no matter great our medical care. Sorry, but it’s gonna happen some time. But because of the hope I have in Jesus Christ, I know that my eternal safety is secure. I actually even looked up the word “hope” in the dictionary and it said “to desire with expectation of obtainent”. Amen!!
So how am I feeling? That mostly depends on the day as far as the physical and emotional stuff. But the feelings that, no matter how bad the day, never go away are feeling loved, blessed, and taken care of. I feel so lucky that, although physically I am wiped, I can still spread the message of awareness and hope through this blog. And I am also thankful for our family and friends and all of you praying for us. A lot to be thankful for! Yes, even the day after Thanksgiving (: