Sunday, May 27, 2012

Cancer is not Glamorous

Cancer is not glamorous. As if I had to tell you. Just so you know this is going to be a whiny complainy post for the most part.

Part of my head is shaved. I haven't figured out how to style my hair so it always looks disheveled. I keep a scarf on my head to try to cover it up - mainly to make myself feel less self-conscious. My friends and family tell me that the scar is not that noticeable. Eric and a few others have told me my scar is huge and I should keep it covered.

I'm also on a steroid regiment to keep the swelling down in my brain. The steroids cause my face to swell. It also gives me a huge appetite. Any weight loss from the honeymoon cruise has been regained and then some. The face swelling and weight gain does not make one feel glamorous to say the least. Steroids also cause massive acne break outs. Cool. I needed that like I need another hole in my head. (Sorry. Couldn't resist)

I haven't done chemo in months now so the cancer is getting worse. I know this because the pain in my right hip is worse. I have a hard time walking. My right knee hurts. Left arm really hurts. I have throbbing pain in my right upper rib. Goes without saying, but my head and neck really hurt. I'm officially an old lady because getting myself dressed takes a lot of effort. My brother and sister have been known to help me at times. Sitting for too long (meaning more than 10 minutes) is difficult with my bad hip.

Sleeping is difficult. I can't lay on my left side because that's where my scar is. I have a limited range of motion in my neck and it's much much more comfy to lay on my right side. That irritates my hip and knee. My arm and side throbs regardless of what side I lay on. So my solution is: pain pills! Annoyingly, because of the brain surgery, the doctors took away most of my meds. I'm limited to really strong narcotics or nothing. No aspirin, tylenol etc. If you've been keeping up with my other blogs, you would know I hate feeling over medicated and that's exactly what happens with the meds I'm on now. It's a balance between pain and being zonked.

Also, the chronic pain kinda makes me a cranky b. I can't do a whole lot and I'm just a lump most of the time. I'm just cranky and rude sometimes. I'm not myself and I don't like it. I'm really worried about my momma. She's still obstructed. For those of you counting we're 2 months plus without eating. The IV feedings are getting old and she misses herself.

That's the worst part about cancer. You no longer feel like yourself. Like that got taken away from you. That your life is not your own an it's all going in a direction you don't want to go in, but you have little choice in the matter so you follow the only road in front of you slowly, deliberately and with much effort.

We have been very blessed to have lots of support along the road we travel. That we expected to dwindle, but it's grown and grown. It's a small miracle in itself. 
 
Ok so onto more positive news. I'm tired of complaining:

- Tuesday I go to Georgetown Hospital to start the radiation process. They're doing a CT Scan and a radiation simulation. Honestly,I don't know much about radiation- how or why it works. I have lots of questions for the doctors.
- Eric was able to come visit for the whole weekend. That made me happy. I can't go to NYC in my current state so him coming here was very nice.
-My sister is visiting for a whole 3 weeks! It's awesome and just nice to have her kids around. We celebrated my nephew's 3rd birthday today - complete with pool party and Spiderman cake. I think I ate more cake than he did. Actually, I'm pretty sure of that fact. It was a great day. I was in excruciating pain, but fought through it to hang out with the people I love and be part of the festivities. (One of the nice part about Lisa being here is that it takes some of the burden off of Jacob, who does so much for my mom and I that I'm not really sure how he hasn't popped yet.)

- I found an even better clinical trial at Georgetown so I'm happy about that. So the plan is radiation on my head for 2 weeks, palliative radiation on my hip maybe, then 6 more weeks of chemo.

8 comments:

  1. Stay strong, Patti. You make us all unbelievably proud, especially me:)

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  2. I agree, stay strong. Things will get better!!

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  3. You totally amaze me Patti. I love your blog. Keep writing and keep fighting. Big giant hugs to you.
    - Deb

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  4. XOXOXOXO
    Thinking of you and sending you lots of love!
    XOXOXOXO
    Dale

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  5. Hi, Patti~

    I'm so glad that Jacob sends updates about you and your Mom.

    I don't usually comment here, but you amaze me. As our Auntie Mitty says, "We have to just keep on keepin' on." You do that better than anyone else I know.

    Lots of love and wishes for your continued strength and for lessening pain.

    Your cuz.

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  6. Hi I’m Heather! Please email me, I have a question about your blog! LifesABanquet1(at)gmail.com

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  7. Can anyone give an update on Patti? I have been following her blog in Nashville. She is such an inspiration to all cancer survivors. Our prayers are with her and her family.

    Janice

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    Replies
    1. Patti unfortunately passed away this November 11th. http://www.jeffersonfuneralchapel.com/obituary/Patricia-Clara-Varney/San-Francisco/1132558

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