That night I got a call from the neurologist's office: an appointment had opened up, and could I be there at 8 in the morning. Yes, I'll be there.
The neurologist was young and friendly. I explained the nerve pain I'd been having and talked at length about the excruciating thigh pain. He had me put on some ultra sexy blue paper shorts and then asked me to touch my nose, wiggle my toes, walk this way, walk back that way. The only test that seemed to matter was when he pulled a pin out of his pocket and started sticking my leg with it. As soon as he hit the area of doom, I went through the roof. So I guess instead of calling it numb we should call it super sensitive. He upped my prescription of gabapentin (Neurontin) to 1800 mg per day. Quite a step up from the 300 mg Dr. Gaeke had prescribed. The neurologist called that a "holistic" dose, whatever that means. He also ordered an EMG test of my legs and both arms (since my fingertips are numb, too), which I guess is basically torture. Shocks up and down the limbs first, then needles stuck into muscle to see how the nerves react. I'm freaking out a little bit about it, but the appointment isn't until the 22nd, so I've pushed it deep, deep down for now. Ugh.
Graham and I left that appointment and headed straight to Dr. Gaeke's office. Graham took the day off to sit with me all day Thursday. The idea was it was my last treatment. That's what Dr. Gaeke had told me when she came in with her binder the day I was having so much trouble with the side effects. Four then radiation. Well, a few hours into chemo Dr. Gaeke came in, her eyebrows apologizing before she even opened her mouth. Eight treatments, she said. No. No. No, I thought. The good news is we're at the half-way point, she said. I just can't do this anymore. I teared up as she explained she'd spoken with the radiation oncologist who was very nervous about giving me only four treatments because of the risk excess radiation poses in causing breast cancer. That's about all she said. She left the room. I cried.
I've been crying since. I think I need an attitude adjustment. Why can't I be like those freak shows you see on TV, the ones who are all smiles because, they say, "Life is good!", the ones who tell their stories about suffering through chemo and appreciating every minute of it and blah blah blah. Let me tell you, life with chemo is not good. I'm not a fan of insanely toxic chemicals being pumped into my body. Pain that lasts for days isn't good. Making sure there's a large cup nearby just in case you need to puke? That's not fun either. None of this is fun. None of this is good. I'm sorry if I'm not being particularly inspirational. Chemo is sucking the inspiration right out of me, and knowing I've got two more months in bed with the ugly monster has simply pissed me off.
If you think I need a good smack and talking to, bring it on. My attitude's in the porta pits right about now. Plus it's day 5 after chemo and my body's flashing, my thigh stinging, my heartburn, well, burning. And I'm only half way there.
Love you all.
Tara
10 comments:
You have no idea who I am, but I want you to know that I've been reading your blog for a while - I found you through another friend's blog - and I think for whatever reason you just needed to know that you have so many people that probably read your blog, like me, and find inspiration in how real you are about this entire situation. I cannot imagine being young, scared and going through what you do each week with chemo, radiation and all that comes with "the ugly monster."
My nephew was diagnosed with leukemia at 3 months old - he had a bone marrow transplant and is living a life any normal 10 year old little boy could imagine. However, my sister was only 20 when he was born, so she pretty much went through leukemia too. Hearing you talk about all your visits and treatments - she did it all - all by herself with a little 3 month old.
I just want you to be encouraged and know that it's ok to be mad and frustrated and cry. I pray that this ugly monster gets smaller and smaller every week and that this half way point is just one more milestone in this battle that you will win!
I am so MAD at cancer right now! Not only is it being mean and putting you through misery right now, but i just found out yesterday my husband's step-grandpa (who only retired last year) discovered he has Pancreatic cancer that is inoperable this week. AARRRGGG! Just want you to know I am thinking of you, and I lit a candle after October's baptism this Sunday to pray for your recovery and for less pain. Be mad, be frustrated, scream from the top of your lungs... we all are ticked off about it too! We're screaming right with you!
Tara, you have no idea who I am either. Your blog popped up when you mentioned Schlotzsky's and Google alerted me. (former franchisee) Probably everyone knows someone who has or had cancer and reading your blog reminds us again we must do what we can to eradicate this monster.
You are in my thoughts and prayers and those of us watching from afar are holding your hand through this if only in cyberspace.
You just get mad, kick and scream your way out of this. We'll all be waiting for that day with you.
Praying for you. Hang in there and there is nothing wrong with being mad.
Hi, Tara. You don't know me either. I found your blog through another person's blog. It interested me because a friend of mine, her daughter has Hodgkin's also & just finished chemo & is now having radiation. She is cancer free now. You have to believe that there is a light at the end of that long tunnel. Your post has brought me to tears. I cannot begin to imagine what you must be going through. You have every right to be mad. I am so sorry you have to go through so much pain to get through this "monster". Oh, & as far as the EMG goes. I don't believe it's as bad as what you think it will be. My son was born with a nerve injury & has had several EMG's done, the first when he was only one month old. They use tiny tiny needles that you can barely feel. Almost like needles they use for acupuncture. Or this is how it was in his case anyways. I think the whole procedure hurt me more than it did him. I hope it's okay that I leave a comment. You are in my prayers. God Bless.
Hope you're feeling better after the last treatment. We're praying for you and love you tons!
i love you Tara and am here for you
forever (forever ever...forever ever:)
Lauren
I love ya! For those who don't know, at the same time Tara is going through this, she also planned our amazing ten year high school reunion without a frown on her face! That is inspirational!
All I can think to say is I'm so sorry. And I can't imagine the utter disappointment.
Thinking of you and hoping to bump into again soon.
Melanie
F*cking ugly monster.
Wow we are having the same moment. I just wrote a huge why me note about being only half way through the treatment that has been outlined for me. Although we have both been given very different time lines for similar diagnosis and treatments (ABVD)??? I hope they (Dr's) aren't leading you along 4 treatments at a time, because it must be heartbreaking to hear the word "more" at this point. Ask them what the average Hodgkin's patient gets - bandaid style.
Best to stay away from the radiation, I'm trying to avoid too because of the future risks of causing more cancer in the area radiated... get your lasers of my jublies!
What can I say... I'm feeling beat up and haggard too. I guess just having the strength to grieve and vent is enough of an accomplishment right now. Keep it common...;)
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