Wednesday, March 30, 2011

and all the skies are grey today

I just got got a call from the Dr.'s office letting me know I have been approved to take part in the trial. Although I was assured that we would be able to start injections this week, there is no room in the cancer hospital for me until Monday. Monday at 4 is the earliest we can start. They can't do the randomization (to see if I get the vaccine or the other drug) unless I can start injections within 24 hours. So I won't know till Sunday night if I even get to do the vaccine. I have surgery scheduled for Tuesday in case I get chosen to the other arm of the trial.

I have been praying to just get this over with. Prayers, temple, fasting, swearing. None of these are giving me any speed here. I never imagined I would have to wait another weekend! I tried everything today! Bawling over the phone, begging on my knees (I guess they didn't see that), having my cute 5 year old talk a little louder so they might take pitty on this MOTHER. I even sicked Josh on them. Nothing.

Pretty sure I could pull off a STAT trip tonight to Italy, but can't get a bed in a hospital 15 miles away until Monday?

I realize the perfect situation would have been a faster approach. But second opinions seem always to be a good idea. It takes a week to get into anyone, and then they tell you to go to someone else, etc. Scans take a week to get scheduled for. Then we find things on them, then I change my mind. Days turn into weeks, and weeks into months. I asked one surgeon to just take the dang thing out and then we can decide what to do, and he said don't take it out without a plan. I was refurred to MD Anderson by a dertmatologist, they called and said 2 weeks until the appointment, and then you have to have the workups etc. We would be looking at 3 weeks out to get into anything down there.

Obviously if there were a clear cut, great option, I would be well into that. With such poor response rates to current treatment, it is not all black and white.

It could be worse. I didn't have a dermatologist appointment until 2 weeks later than the day I had the first metastasis removed. Thank you to my endocrinologist!! I would have no idea this thing was going on inside if I wouldn't have had that little spot growing on my leg. Thank you small wart-like lesion! I can feel the tumor in my leg if I press really hard on just the right spot. I would never come up with that if I didn't know where to look. And I was NOT looking for cancer. I was cured, remember?

Look, if this cancer is inclined to stay in the leg, it will do just that for a while. If it has decided to break loose, it is probably in the system. I am putting my life in the hands of this Dr. and I don't need to be told things are going too slowly, because trust me, I know. I want this thing resolved pretty bad. I have to wake up to this nightmare every morning. And all I've had to battle this Beast is asparagus and berries?!! Worst weapons ever!!!

This has taken every ounce of strength of mind I have. And I am running out.

When you come over to talk to me about it I may ask you to cut the dang things out with my bread knife. I will tell you this situation is driving me crazy and I can't believe I'm not is some cancer ward puking my guts out. But please don't diss my Dr., because that will not help me heal. Let that anxiety be mine. It's kind of like how you can complain about your mom, but no body else can. (Not you, mom). I am putting my life in this guys' hands. All the opinions pointed to this Dr., and no one would be happy unless I was in his care. Well, this is what he is telling me to do. He is the best out there and I really like him. I have to trust him.

Sorry to ramble. I feel like hiding under my sheets and never coming out. I'm sorry I'm not answering the phone or door today, I can't take it. I suppose I'm in the depths of despair. Plus I'm angry. Two horrible feelings.

21 comments:

  1. I will mail you a guillotine. It is for anyone that comes in your way, or worse comes to worse, you can use it instead of the butter knife. I am still praying for a miracle. But the guillotine is plan B.

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  2. I think you get to have a depressed, angry day. Maybe a break from berries and asparagus with a plate full of fries, a huge burger with three cheeses and a chocolate shake (you know, for antioxidants) is in order? I love you and am proud to be your little (er... you know what I mean...) brother.

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  3. Alisa, I am sorry you are having a bad day. I hope the skies look bluer tomorrow. I can't believe that hearing Luke's voice didn't part the seas for you!

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  4. All this is requiring way too much patience. I'm terrible at having patience. It's my worst weakness. I can't imagine how horribly I would be handling this. I think you're handling it great, and are entitled to a nice crawl under the sheets from time to time. I will pray that Monday will come fast.

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  5. Agreed with Jill. I appreciate you and your honesty. Feel how you will, say what you will, it is all appreciated by my reading eyes.

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  6. I am sorry too. All you have to do is hang in there, no one said you had be out of pjs with your hair done. So, stay in bed and go to a fantasy world of books and movies for the weekend!

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  7. You get to feel however you want! That is the (possibly) only thing I have learned in my life. Each person is entitled to their own feelings, and no matter what those feelings are, they are the right feelings for that person at that moment. Face punch to anyone who tells you differently!

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  8. Thanks ladies (and Matt) for the validation.

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  9. The forecast for tomorrow looks better. It may not help to see some sun, but it sure can't hurt.

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  10. There is sunshine in the forecast...literally. Friday will be the hottest day of the year, so maybe that is a sign....or symbolic...right? Hang in there, blue skies are on their way! (-:

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  11. Sorry for the crappy day. I don't blame you for keeping the door shut :) Got your email about the yard. We'll just play it by ear but know the offer stands as does anything else you need...

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  12. Good news, conference is usually a good pick-me-up.

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  13. Hang in there, friend. We'll keep sending prayers your way. Sometimes you have to step into the dark to see the light....

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  14. I'm always thinking of you.

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  15. I think the best opinions are from all your family and friends here in your comment page... stay in your pj's, read books and watch movies (I would suggest comedies!), eat big burgers and greasy fries and thick, chocolatey milk shakes, and spend time with your family in the beautiful sunshine. Love ya, Alisa!

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  16. April's Ensign has the most amazing articles dealing with adversity. Read the one about infertility. One of the sister's thoughts gave me new understanding about why we have to face certain things over again. Your faith isn't being tested, it is being perfected. Love you and sending my prayers your way!

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  17. Is there anyone you would like your aunt Kathy to beat up? I think I could do that about now.

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  18. It is the day after this post and the sun is already shinning. Yesterday the weather matched the news, I hope the brighter skies bring better news. (and I vote you absolutely get a bad day, or two or three, in the middle of all this.)

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  19. Alisa, I really appreciate your honesty. It's more than OK to have really crummy days sometimes. You're going to beat this thing.

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  20. I'm composing a "Don't Dis My Doctor" rap as we speak. Maybe it will show up on You Tube, just like "Teach me how to Jimmer" and that crazy haired black guy who says "Hide yo' wife, hide yo' kids....., fo real!" Hang in there, girl.

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