I am posting this Music Monday a little early. And yes, I know that I have already used it as a musical inspiration. However, this song needs to be posted today because a new friend for life starts her chemo journey today, and I just want her to know that I'm here for her!! Prayers to you my friend...and to anyone else out there that needs it!
Girl child and I like this song but someone in the family (cough, cough, dad) always changes the station when it comes on. So we both decided it should be a Music Monday on the blog so we could listen to whenever we wanted. And then I saw this video and thought...PERFECT! I feel just like this little pink teddy bear (just watch it, you'll understand).
It's possible that I've been a little "doom and gloom" lately. I own that and am okay with it. It was necessary to do a little bit of wallowing. But I don't want to leave you with the impression that I have jumped off the ledge, so I thought that I would post a few happy things over the next few days while I'm waiting for my (hopefully) LAST doctor's appointment on Tuesday. I opened up my email the other day, and this is the message that I got from a student...which brought me to tears...and helped to bring me out of the self-imposed darkness just a little bit. "Hi Mrs. Yusko,
I read about your initial scan results, I'm sorry to hear about that. Cancer sucks. But you're an amazing woman with enormous capability and I have no doubt God will do great things for you and in your life. Isn't life weird? Bad things happen to good people and not so nice people sometimes get out of life scott-free, all emotions, mental capabilities and body parts intact. And most of the time we don't know why things happen, and sometimes it doesn't always help to hear, "You'll understand after all this is over," or, "Things happen for a reason," because you don't care, you just want the craptastic times to be over. I guess what I've learned from my own struggles is you'll never really know why you have to go through such tough times, but in the end at least you're then blessed with the capability to help others going through similar situations. So maybe that's the purpose of suffering, to then help others. I think that's a beautiful purpose.
I think the lives of people are important, and I think you're special so that just makes you even more important. I don't know much but what I do know is that the life of someone as amazing, inspiring and kind as you has to be full of purpose. God's not done with you yet Mrs. Yusko, (we're totally seeing Divergent together by the way). We're all praying and sending good thoughts and love. Hope to hear from you soon. :) So I'll just leave you with this, "Though he slay me, yet I will hope in him."- Job 13:15 You rock!" Damn it, how can words from someone so young hit you right where you need it? And what she didn't know is that her words have kind of come true. A new friend-for-life was just diagnosed on the same day I got my scan results and being there to answer her questions and offer support in whatever way I can has been something that I am grateful for. If I can help at least one person through their own battle, then maybe it was all worth it. And bonus points to said student for using "craptastic" correctly and in context.
Holy Crap, there still is no plan moving forward. I am hoping that next Tuesday's appointment with the radiation oncologist (who likes to explain things in GREAT detail) will provide the answers I need so that I can have a "schedule" for what's next.
Besides the fact that I've had 4 scans and 4 doctor's appointments and 1 major meltdown in the last two weeks...Why the delay? Because I'm being a bad patient, at least according to the doctors (who I love and I know they have my best interests at heart). But the "best" strategy moving forward (according to them) involves radiation plus multiple surgeries over the course of the next 2 years, where I'll be out of commission for weeks and/or months at a time.
And I'm no longer sure that it's the "best" strategy for me. Decisions...decisions...
FYI, being a cancer patient sucks :)
I will keep you all updated as soon as I have a plan that I feel right moving forward with. Thanks for the continued support and prayers.
Call me crazy, but I actually thought that a week after chemo ended I would be on the road to feeling better. Clearly that was naive thinking. And probably has something to do with the fact that they conveniently don't tell you many of these things up front. It's not that they're lying to you exactly, but I guess they don't want to overwhelm you with small details like it could take MONTHS and maybe YEARS to start feeling like normal again. Oh, they tell me this now with a smile on their face that says, "you poor sweet girl, thinking this would all go away," but I hadn't considered that two weeks after chemo was over I'd still feel like crap. UGH! Because I'd love for others not to be surprised by this, here is how I currently feel (or at least, what annoys me the most): (1) I am pretty sure that I have aged TWENTY YEARS in these past 20 weeks. No joke, I feel like an old lady. Watch me start walking after sitting/standing for a few minutes and you will believe me. (2) I am tired. All. The. Time. (3) I am up 13-18 pounds from my pre-chemo weight. It depends on which weight you're comparing to...the first day of chemo weight or the summer weight before all this started. Either way...SUCKS! I have one pair of jeans and of course some great sweaters (which don't work so well with this unusual heat wave we've been having) that fit. Oh, and my pajama pants. But that's it. Keith has offered to loan me some of his soccer referee shorts...classic. (4) I think part of this 13-18 pounds is water weight/edema. Dear God, my skin is tight everywhere: toes...arms...of course, legs. Ick. And this is normal. And no one is concerned. (Well, I am, and I'm starting to do something about it...shhh!) There is only about 20 minutes when I first wake up in the morning where I don't feel stiff and sore because of this. And do you know what they say to do to help with this? Don't stand for long periods of time. Sit with your feet elevated. Walk. Hmmm, call me crazy, but doesn't walking require standing for a period of time? (5) My hair is growing back and I'm now a blonde. This is not bad, just weird! (6) I will probably die of a heart attack before the cancer kills me. Okay, that's a little doom and gloom, but is a reality. The specific chemo I had damages your heart and you can only have so much of it in your lifetime. I've already hit my maximum dose. And when I walk up the stairs or lift boxes of Pantry Packs I am sure that I am having that heart attack. (7) Chemo brain + me = stupid. Enough said. (8) I can't remember what I was just going to type here. See #7. (9) Oh yes, that's right, I was going to mention that I probably have half of my taste buds back. Which is GREATLY improved over having NONE, so I will not be complaining about this. I just had my first mocha since before Thanksgiving. Miracle. We ate at Dick's over the weekend and I could taste that cheap tarter sauce that you can smother your french fries in...and the french fries. (If you comment here about eating healthy, you will no longer be my friend). (10) The neuropathy is getting better. I can feel my fingers most of the time (they do go numb intermittently still). My face is rarely numb, and I think that my shoulders are back to normal. So, only walking around on numb feet is still weird. (11) I have NO temperature regulation. Can you say chemo-induced menopause? Oh yeah, this is a winner. And might be permanent. Because of my "age" there's no way to know for sure. Oh goodie. (12) Pain, pain, and more pain. Yep, it's pretty constant. Not a sharp, shooting, someone stabbing me with an ice pick pain. But kind of a consistent, dull roar type of pain. All over. More fun. (13) Will there ever be a day when I'm not DYING of thirst? Today, I was watching a tennis match at school. I had 2 bottles of water, 1 bottle of green tea, and 1 bottle of some weird flavored water. In 2 1/2 hours. Because I was sure I was going to die if I didn't. I've been typing this post next to an empty glass of water thinking my husband will be dead if he doesn't refill it soon. (14) I've learned what "hitting the wall" really means. Because I've hit it. And when you use it in sports to discuss you're performance, you are not using it correctly. Because hitting a wall actually means HITTING. A. WALL. And not being able to go one baby step farther. I've done it a few times these past few weeks. I walked down the street to the neighbors' and thought I'd have to spend the night. I carried a cooler filled with water bottles across a soccer field and basically died in the stands. If only I was kidding. (15) I'm TIRED of being a patient. And I'm starting to be a bad one. And I don't care. That's all I can think of right now. Jealous, right? Fingers crossed that these get better some day...
Because I know that you were concerned I might not know what to do with myself without chemo to go to, never fear. The doctors obviously wanted to make sure that I had something to keep me occupied. I had a scan and/or doctor appointment every day last week...and I only wish that was a joke. I had to have a post-chemo echo (to see how bad they damaged my heart with the chemo), a CT scan (that's the fun one where you get to drink the radioactive sludge), and several follow-up appointments to discuss these scans with the surgeon and the oncologist. And because that wasn't enough fun, I have two more scans this week (MRI and mammogram), an appointment with a reconstruction surgeon, and ANOTHER meeting with my "regular" surgeon. HOLY CRAP! Have I mentioned that I am beginning to hate being a cancer patient??? I took the weekend to wallow in the sucky-ness (shut up, I don't care if that's not a word) that is my life right now. And how much I didn't like the initial results of my scans. So, shut up already and tell us the news, right? Here's what the scans show: There are still spots on my liver, and my kidney, and my lung. And the lymph nodes that were "lighting up" initially. AAAAH! Are you KIDDING me?! Now, they are small, and they haven't changed in size, so several doctors have said, "yeah! Good news!" But I say, "WHAT? 20 weeks of chemo and the scans aren't CLEAR? The spots haven't gotten smaller?" I think I'm going back to using "craptastic!" All I really wanted was some positive result. I've played along all this time and put my body through hell all these weeks and I get "no change?" To say the least, I was really disappointed. And I lost it at the appointment on Friday where we discussed these scans. LOST IT! Like, she had to prescribe me calming meds because I think she thought I was going to leave there and kill someone. Keith wins the prize for betting I wouldn't fill the prescription...I haven't...but I think she felt compelled to mellow me out. Or maybe legally required not to send a crazy person out into the world. Then I decided to wallow in self pity this weekend because you know what? You just can't have a positive attitude every day. And I felt I was due for a good wallow in how crappy life is sometimes. I've come out of that funk now, and am hoping to get through the rest of these scans and appointments and hope for a plan moving forward. Surgery? Radiation? What's next? These are questions that you all want to know and I'm hoping answers are on the horizon. I appreciate all the thoughts and prayers coming my way. I feel the love and the strength, honest, and I definitely need it. Stupid. Cancer.
The LAST one! Hallelujah! Unfortunately, not much to tell until all the scans and follow-up doctor appointments next week (seriously, there is at least one every day). But for now, I am celebrating the END of chemo! Here's a picture of me on my way to the last treatment Tuesday...Stupid Cancer, indeed!