High Drama

Sunday morning we had one of those perfect married moments. We went to our local cafe, Shirley's, ordered breakfast - shared the Sunday paper - travel had an article on Ireland and we remembered our great trip, marveled at the stupid stuff people get up to, shared bits and pieces of news and opinions - just one of those moments when you are with your perfect person and in complete accord and enjoying each other. It was wonderful.
So we went home and I got out of the car and got to the step and my legs quit working - gone. Fortunately Gene was hovering because I had been weak all week so I landed gently on the garage step - and could not move. Well, high drama ensues - including a group hug with 4 EMT's to get me on a gurney --- and I am in the ER and the doctor picks up my leg and tells me to hold it and it drops like a rock. Well, this did not seem like a good thing. The legs started working sort of - shortly I could bend my knees but I have been admitted and tested and generally worked over.
And it wasn't nearly as bad as I feared - it is steroidal myopathy or severe muscle weakness that this particular steroid causes in the thigh muscles.
So I can once again stand and walk 50 feet and that met the requirement to come home and I am doing physical therapy to get stronger. I still tire so easily but I am very motivated and will focus on the therapy for the next week.
Please don't think I have been ignoring your emails - I appreciate them all.

Wet Mess

This has been an extremely difficult week. On Monday I was hit with such extreme exhaustion that I could not read, if I got dressed I had to rest in bed for an hour, I could barely get to the bathroom. I could not cope with anything and just lay in bed pretty much weeping. And that horrified and terrified me - I define my self as the coper, the challenge taker, a person that can.....and the more I panicked, the more I got anxious, the more exhausted I got and it was one huge downward spiral -- I turned into Big Wet Mess Lori - and the "real" me seemed to have been erased.

Thank God for Gene - He said all the right things - this is a temporary setback, it will get better, and we need to call the doctor.

So, we did - and I am going to start taking antidepressants - and although they tell me that it will not reach therapeutic levels in my blood for a while - It is going to get better - and knowing that made the wet panic pass and stopped the spiral. PHEW! I just have to wait -- and it will get better and I won't spend my days or decades as Wet Mess Lori. Thank God we live in a time where there are chemical supports for depression and anxiety and I am so glad this is available to me.

Now, as to the cause - I told you all that we were tapering off the steroids for the tumors - Well, what is supposed to happen is you very gradually taper off (dangerous stuff, steroids) and your body is supposer to start making up the the stuff naturally -- and my body isn't or can't or what ever - so I had a huge crash. So we are back at the original dose and will do a super, duper, extremely slow motion taper so this doesn't happen again.
And today is better.

So I had the oncology meeting - I am not going to be participating in any clinical trials. Any trials out there that involve my type of cancer will not accept what we are describing as resolved brain issues. That means brain tumors - even gone - complicate the studies too much. So that is done.

We went through a huge list of chemo options. Here is my thinking on that - If it combined the phrase - No documented longevity (That means no extra time) with anything like, perforating, ulcerating, or coughing up blood - NOPE - I want to live days or decades as real Lori not Wet Mess.

So we are going with Taxol starting on April 9th and again on the 30th and evaluation.
So on the day of the brain MRI, I will also do a complete Cat Scan of the body to set a base line for the tumors in my body.
And it will be sets of 2 chemos - with a 3 week break in between and then an evaluation.

So we are off to the next adventure. Right now, in slow motion or on pause.

Surgery done - It went well and I feel fine. The port will make my life much easier.
Life is good.

Update 9

Oh Boy! - I dropped the laptop - and some of the keys stick now - Notably the 'a' key, the period, a couple of others that I didn't realize - so my last update looked spastic. Mechanical difficulties and not stopping to proofread -- OOOps.
So it was the last treatment not the lst. Ok - I will remember to proof my work........I know better.

Well, I can't drive anymore - figured that out right away; it's a loss of independence that's hard to be upbeat about.
But people are good and Gene is working at home - so he can get me to all the appointments. He is "only" going to be working 60 hours a week (He loves his job and it is a big delight to him--it is cool to discuss the impact of nulls on software - we have fun).

The IV port insertion will happen on Wednesday morning early. Lab work tomorrow but that doesn't take long.
I had the best weekend. I went to my daughter's school friend's wedding and the bride and the DD were both breathtaking. I had listened to Holly's wedding plans - Her colors were silver, black, and white - and it went off perfectly - I had seen pictures of her dress beforehand but it was so much more lovely in reality....It was so great.

And Gene and I had a major date on Sunday - We went to UMKC Spenser Theatre and saw "A Marvelous Party" - a musical collection of Noel Coward songs - the 3 people that performed were immensely talented and it was so funny! The theatre was a gem and the acoustics are wonderful.