ALright....Where the FFFFF..*ahem*, HELL is spring, Goddamn it?!?!Okay. Got that outta my system again, for a little bit.
Now on to my regularly scheduled gripe and rant fest: As seems to be the norm lately, my emotions have run from one end of the spectrum to the other and all points in between. I have gotten mad, screaming practically stark raving hair tearing out mad; bawled my eyes out until they burned and were just about swollen shut; and very very occasionally felt that irrepressable drive to fight like hell...that has surfaced a couple of times anyway...
For the most part...I guess I have just felt completely wiped out...Obliterated. My mind, I would swear, sometimes feels completely blasted out...
As for the radiation treatments, I am now done with treatment # 12. Two more to go, then all the IL-2 testing begins...That'll be a circus I am sure...and not in the ways that make you laugh. Course, that's not to say that I won't seek out things to make lame and sometimes disturbing jokes about later on....
My schedule is going to get even more insane; not just in the time crunch way either. By the end of next week, if I am not in a padded cell with four point restraints getting regular injections of Thorazine, it will be nothing short of a miracle.
Friday (this week) I have to have a CT scan to re-assess my metastases...I am assuming it is to check and get current sizes of the existing mets, and scarily enough, to make sure there are no new ones *I HOPE THE HELL NOT*
Then on the 24th, it's on for another PET scan. At the semi-near buttcrack of dawn on the 26th I have to go back in for a Cardiolite Stress test, then on to an MRI of the brain around lunchtime. Let me just interject here by saying that this MRI of the brain is freaking me out ,by far, a whole shitload more than any of these other tests. For obvious reasons: I hope and pray with all my heart that there is not an eeeeviiiiil melanoma met sinking its claws into the flesh of my brain, but also the less obvious: baby that I am, I gotta confess...I DONT WANT The HEAD CAGE! *cue Psycho theme music*
That thing freaks me out. I'm not kidding.
Then, the 27th is pulmonary function test day. I go in to see the oncologist on May 3rd, I am supposing to go over all these test results and to have any more iL-2 related Q & A...I am sure I will come up with another book's worth of questions, too.
As it stands right now, the date for my admission to the hospital for high dose IL-2 is May 7th. To say that I am scared shitless still somehow doesn't seem to do the sheer magnitude of my raw white hot panic justice.
Don't get me wrong...I am far more than anxious to kick melanoma's nasty and evil ass...but I would be lying if I said I wasn't scared outta my wits.
It just occurred to me that I neglected to mention what my decision was about where to get the high dose IL-2 administered. After a LOT of hair tearing (surprised I don't have bald spots yet), I finally decided to go with the hospital that is close to my home. I can only imagine how this might confuse some people...they may not understand it, considering the alternative, St. LUke's Hospital, is a highly respected institution more than skilled...experts at giving IL-2....Ultimitely, it came down to personal and private family reasons that steered my decision. NOt that I haven't seriously made sure that Helen F. Graham is highly skilled...I have. It is a relatively new place, in the beginnings of making and establishing a good reputation for itself.
The doc and the whole staff that will be in charge of my care while on IL-2 have been rigorously trained by the staff at Pittsburg, which is another IL-2 certified and respected place. I will be receiving it in the bone marrow unit, but will be under the care of only the docs and nurses who have been trained thoroughly in giving the IL-2. I will be getting the care and nurse to patient ratio that is comparable to that in the ICU...
Plus, I got to chat on the phone to another young woman who has actually completed her course of high dose IL-2 there. She is a 21 year old stage IV melanoma warrior...and even after chatting to her once, I could tell she is a fighter...Anyway, she couldn't say enough good about this place...
I feel a little bit guilty about not going to St. Lukes, if only for all those amazing folks who were so caring as to offer to pop in and see me while I was there...I feel bad about that...still wish I could meet some of you :(
Anyway...that's where things are at with me right now.
On a side note: I was majorly pissed to find out that I was completely blown off for that Family Circle article. Kudos going out to those women who were actually published in that article to speaking out though! I just got so steaming mad...That chick sucked up over two hours of my time..two separate interviews..Plus, she asked me to email her some digital pics of myself and myself with my family.
A second woman even contacted me saying that she was the fact checker for the article. She read me, word for word, the article as it would appear in the mag. She told me this was how it would appear. She told me they were using my story, and that the issue was going to be out mid-April. WTF. Why did that wench have to go and lie to me like that...that just ain't right, and if I had half a mind to, I would be filling her email box with a hefty dose of hate mail. LOL.
Well...color me retarded...once again.
As for that article I sent in to that local magazine, I haven't heard back from the girl I shot the email off to yet... :( :(
Bummer. Oh well...hoping I will get a chance to speak out some day....
4 comments:
Hi Shannon,
As usual your blog is refreshingly honest and to me very healthy. Someone I trust, with a background in psycology, told me a long time a go that depression is sometimes a result of supressed anger. Let me just say that I took that as a blanket check to be out there when I'm angry, rather than risk supressing it. I'm sure those near to me wished I'd never heard that but when I read you blog I honestly think your ability to deal with what makes you angry both with honesty and humor is a great sign.
I'm sorry they didn't include your story in the article. They should have.
I think having IL 2 close to home at a hospital that is establishing their reputation sounds good. Sometimes when adequately trained, hospitals like that are trying so hard that they can surpass the name brand places.
I love your photographs and I hope you get a sure enough spring soon.
Take care, Carver
Shannon,
Well, maybe something good can come of all your upcoming tests:
1. The flurry of tests and scans may just keep you distracted leading up to the start of IL-2. Distraction is good.
2. Hopefully you'll find out that mel is playing nice right now, and not growing too much. (we hope, we hope, we hope).
3. With your MRI, you'll find out for sure that you do indeed have a brain, and a NORMAL one at that. (You can impress your friends and family with that!)
I'm sure the irony is not completely lost on you that you will be starting your 1st dose of IL-2 on Melanoma Monday. In a scenario that is so totally NOT amusing, I smirked when I read that you begin treatment on May 7th. An incredible coincidence to be sure.
I'm sorry your article was not published. I know that sometimes things get inserted, removed, or switched around at the last minute due to space constraints and such. Hold on to your article as you may have another opportunity to use it. I'm sure you will be increasing melanoma awareness for MANY MANY years to come.
I'm glad you are winding down on your radiation treatments, and hope all goes well with your pre-IL-2 testing.
I think you made the right decision on your treatment location as traveling alone with young children at home would just be so hard emotionally. And you'll need all the support you can get.
I have no idea what you are going through, but I know you'll find the strength to get through this. You are stronger than you realize. Being scared sh*tless is just par for the course, that makes you normal.
Hugs from Texas
melissa
Shannon,
Thanks for the update! Boy, talk about busy schedules! Again, I am so sorry that this is even happening to you and I'm praying that IL-2 will be the treatment that puts an end to mel in your body. I'm continuing to keep you and your family close in thoughts and prayers.
Stay Strong
King (Kathie)
Stage IV 7/05 Liver mets
As always your humor shines through all the turmoil. Yep, you'll be finding out you do have a brain and you can impress friends and neighbors..especially those stepford mom's. lol Your photos are beautiful and when I look at them all I can do is sneeze..high allergy season for me. can you believe we had snow this week...I can't..where is SPRING and warm days. I'm with you, I'm waiting for the warmth and balmy evenings. O hummmm
I'm awfully sorry your story didn't get printed..I can't believe they did that to you..would you consider printing it here for all of us to view. I know it's going to be powerful and I think many people are reading this site..here's a thought...mm month is coming up - is it April or May..send it to your local newspaper..they just may want to print it. Just keep bugging them eventually they'll listen to you.
You take care friend and I'm glad you'll be close to home. love, sue
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