I know that down times are to be expected...I do...it's just that the last week or so has felt low. Today I had 3 dr's appointments all in a row. I literally spent from 8.45 until 12.30pm in the Medical Office building with my 2 year old...shuffling from room to room...and it all felt like such a colossal waste of my time.
I feel angry right now at the medical profession in general now, for no good reason. I suddenly understand how people with chronic diseases can become so angry and grouchy.
I had a blood draw at 9am..followed by OB at 9.30...nothing new and I'm no closer to having a clue about how things will play out. I'm sure the doc feels the same way...she basically said that in a week we'll do the steroid injections and then play it 'by ear' after 30 weeks....but to me it is just more of the yo-yo on the string effect. I know that she is just giving a best-guess and that she can't provide me with the certainty that I need...but I'm just so tired of worrying and not knowing.
10.20 Oncologist...and he was either in a bad mood or in a hurry. He pretty much walked in the door, told me that my bloodwork was good, that the tumor had continued shrinking based on my last x-ray and that I'd be scheduled for another mri after this next chemo. DH asked if it was normal after 3 cycles for the tumor to still be there and he said he expected that there would be scar tissue remaining after the 6th cycle due to the large size of the tumor. Whether or not the remaining cells would be 'viable' was another question but he said that they should be 'sterilized' by the radiation. I asked what percentage of the 80% that go into remission end up having a recurrance and he guessed it at 10%. That number struck me as being surprisingly high. I asked if they had done any molecular biology studies of my tumor cells and he looked through the chart, said no and then..got up and left...just...left...
Apparently, the appt. was over. We used our 10 minutes. I just felt so...bad...like I offended him or I am annoying...I even started thinking that my weight had something to do with it which is really just silly....but it was so odd the way he ran off and left.
I asked dh about it and he made excuses "maybe he's busy, maybe he's having a bad day...." I tried to tell dh that it doesn't matter. Medicine is a 'service industry too' and he got upset with me. "You don't go to the dr. to feel good, you go to get information and that's it". Ummm...ok..spoken like a true...doctor. Sad This is the same guy though, who will get his knickers in a knot if the waiter in the restaurant doesn't refill his drinks etc. To placate me, he assured me that HE doesn't do that to HIS patients. Ummmm...ok...sure!
So then it was off to endocrine...my sore spot right now for mysterious reasons...All of my blood values this week have been normal. Last week, I had a few after-lunch values that were actually 122 or 124 instead of below 120, but I figured out that washing/drying my hands resulted in 'normal' 'scores'.
Actually, the whole 'measure the glucose' thing is a mystery to me. Last night, I measured my nighttime glucose and got a value of 147 Shocked This freaked me out, so I measured it again...different finger...and got 93 Rolling Eyes So...I measured it again and got 96. I decided to go with the 96.
This morning, I got up and it measured 117...so...I measured it again and got 87.
That's a pretty large margine of error there.
I told the endocrine nurse practitioner that I am not very concerned about my blood sugar right now but that I will be watching it next week when I get the solumedrol and prednisone.
She told me that if the doc was in today that she would have put me on INSULIN because of the 2 days where I had values above 120 after lunch..and because my morning glucose is in the 85-89 range and should be 60-90...it is on the 'high edge of normal'.
It's still normal though!!!! Apparently, I don't understand this well enough and I am, for some reason that I don't fully understand, really digging in my heals on this issue.
Maybe because I'm tired of issues, excitement, drama and all that? I'm tired of hearing one thing one week and the opposite the next week. I just want to run off on a vacation by myself for a few days...and pretend that none of this is happening.
I cried the whole way home from the doctor's office...after stopping in at Taco Bell for a #8 value meal. Rolling Eyes There was a song on the radio, I'm Already There...and I just sobbed through the whole thing...because I imagined that it would be what I would want my children to know if I died...that I'm still there for them..that I'm the sunshine in their hair...and the shadow on the wall....
I imagined my husband's grief and my children trying to go on and I just felt sick....even though I know that this isn't what is going to happen. This is a highly curable disease.
I cried because I ended up missing having lunch with my 7 year old today...even though every day I wish that I didn't have to go.
Why am I going through this grieving process now? You would think that the first few weeks after the diagnosis...even after the first round or two of chemo that I would have had this...but now I'm at the 1/2 way point...the tumor is shrinking and the baby is doing well...and now I'm falling apart? I don't get it.
I started seeing a therapist about a month ago and she basically pronounced me 'mentally healthy' (please, no wild, hysterical laughing here!)...then I went and saw her last time and basically every time I opened my mouth to say anything I started crying for no reason that I could think of. I'm crying while I'm writing this and I don't understand that either. Things are looking up so I'm supposed to be even more positive now.
How is that I was the one telling everyone else that it would all be ok a few months ago and now I can't seem to drag myself through the day anymore?
I'm Already There
He called her on the road, from a lonely cold hotel room.
Just to hear her say "I love you" one more time.
And when he heard the sound of the kids laughing in the background,
He had to wipe away a tear from his eye.
A little voice came on the phone, and said "Daddy when you coming home?"
He said the first thing that came to his mind...
I'm already there, take a look around.
I'm the sunshine in your hair, I'm the shadow on the ground.
I'm the whisper in the wind, I'm your imaginary friend.
And I know I'm in your prayers, Oh I'm already there.
She got back on the phone, said "I really miss you darling"
Don't worry about the kids they'll be alright.
Wish I was in your arms, lying right there beside you.
But I know that I'll be in your dreams tonight.
And I'll gently kiss your lips, touch you with my fingertips.
So turn out the light and close your eyes..."
Im already there, don't make a sound.
I'm the beat in your heart, I'm the moonlight shining down.
I'm the whisper in the wind, and I'll be there till the end
When you feel the love that we share, oh i'm already there...
We may be a thousand miles apart, but I'll be with you wherever you are...
I'm already there, take a look around.
I'm the sunshine in your hair, I'm the shadow on the ground.
I'm the whisper in the wind, and I'll be there till the end.
When you feel the love that we share, oh I'm already there...
Oh I'm already there...
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February 23, 2006
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