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Let's Kick Some Mass

Thoughts and stories about making my way through having a mass on my brain

Latest journal entry

Showers Are Overrated

I have my 2nd round of chemo under my belt.  And round 2 kicked my mass!  I am so glad it was only for 5 days.  It was a double dose compared to what I took my first round.  I finished on Sunday night - thank goodness that was the last one because it nearly was a knock-out round.  I don't think I could have done another day.  Now I have 3 weeks off, and then I start all over again.  

But all of the hard work has paid off.  My first MRI after my first round of treatment was "clear".  I hope I get to hear those words for many more years to come!  My next MRI will be in December, and they will be every 2 months.  Forever.  That is what they told me in the beginning.  This MRI wasn't so bad because I didn't have to wear my Silence of the Lambs mask.  I just laid there and listened to Tom Petty serenade me.  The worst part about these MRIs is you have to have an IV.  I have always been told that it is hard to get needles in my veins, so a lot of times I have to get poked more than once.  Obviously the steroids didn't make my veins grow bigger, only my body.  

It has been a very stressful month.  There have been many changes in my life.  One being moving into a new place.  Two being I had to make the decision of whether or not I was going back to work.  I was really hoping to have a somewhat normal life again, and going back to the school that I love, but it is just not in the cards right now.  After advice from the doctors, I have finally made the decision it is just not the right time to go back.  I need to go out on disability for now.  There is no way that my body could handle it right now.  These treatments exhaust me.  I am sure my sister Susan somewhat understands what I mean after she had to help me get up off the concrete at the gas station parking lot today, as I did a log roll gently across the cold wet cement!  When I say EXHAUST, there is no way that I can explain what that means.  It takes every ounce of energy out of you.  For 40 years I showered and washed my hair every single day.  Now I get up for the day and look at the shower and want to cry.  I don't have enough energy to take a shower.  I never thought that I would have the attitude, "I don't need a shower today".  

jkih989 (this word was typed by Tate, my puppy, as he walked across the keyboard).

I am finally feeling settled into the new house.  I still haven't unpacked every single box, but it is that exhaust thing I am talking about again...  I love having the kids here!  There is certainly a lot more action than when I lived by myself.  So, one night as I was showering my granddaughter Tallis poked her head into the bathroom and asked me if I wanted a chicken taco.  I said, "Sure!  But first I need to dry off and comb my hair".  Apparently she went and told her mamma, "Gram said, 'Sure!' she would like a taco, but she needs to dry off and comb her hair".  Ashlee later told me that when Tallis reported back to her about me wanting to join them for dinner, that she had a funny look on her face when she said, "Gram needs to comb her hair".  She shrugged her shoulders and made a funny face, like "What in the world does she need to comb her hair for??!  There is not much left!".  It made me laugh. 

I am looking forward to this Sunday, as the benefit is fast approaching.  I remember when the date was picked it seemed like so far away!  And now it is this weekend!  I am excited to see family and friends.  I know the committee has worked soooo hard on this event.  I am sure it will make me cry seeing all of the support that I have.  It seems like crying is almost a daily event these days.  Hope to see you at the benefit!  It is November 11th 11:00 am - 4:00 pm.  It's a spaghetti dinner at the Disabled American Veteran's Hall, 4515 F St, Omaha, NE.  Tickets are $10 and there will be live music and a ton of great gift baskets you could win!  Or you could bid in the silent auction for a stay in Florida or Arlington, Virginia.  Mostly it would just make me happy to see all of you there!  

I CAN:

- Do another round of treatment after 3 weeks off

- Find some places to volunteer when I feel up to it 

- Cry if I want to 

I CAN'T:

- Focus on the "average life span" of someone with glioblastoma

- Be the average person

- Worry every day - I have to take one day at a time

 

 

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