Sunday, April 22, 2007

Spring is FINALLY here! And some other stuff...

So much has been going on here that my head has literally been spinning around 360 degrees.
Of course, there has been everything that I have been facing and my family too...but also, some very dear and close friends of ours are going through a very difficult and heartbreaking time right now. We have been trying to be there for them and to help them whenever we can...Out of respect for their privacy, I will not go into any more detail here on this blog on what they have been facing...
Just explaining why I have been very scarce as far as giving many of my other friends calls, keeping up with emails, and this blog...

I think I mentioned in my previous post, all the scans and tests that have been required of me to get done in order to get the "all clear" to go ahead with IL-2.
Just had the CT scan this past Friday...Now I don't care how many of these you have to get done as a melanoma patient, or any cancer patient for that matter, it NEVER gets easier...the test itself, never mind the jack nasty contrast stuff they make you drink...but enough about that.
If I had to admit right now, which test scares me the most, clearly it has to be the MRI of the brain. The nightmares have been running rampant every night, let me just tell you...
In one of them, I was shaving my head because the WBR had made most of my hair fall out, and I was left with a scabby skull covered with bald spots and patches of thin scraggly hair...I was looking in the mirror at my scary image and shaving my head...It was then that I jerked bolt upright with a gasp only to see my clock radio, bright neon red numbers glowing in the 3:46 am darkness, and breathed a sigh of relief that it was, for now at least, only a heinous dream....

So, I am now all finished up with my radiation treatments to my right hip and left sacrum. I can actually say I don't have any pain left at all...or at least very little pain, in my left sacrum (low back/back pelvis)...However, I still feel quite a bit of pain in not only my left hip, but also my left knee.

I found out why the knee has been giving me problems, and it literally floored me....of course, not nearly as much..not even in the same stratosphere of that initial X-ray, but that was a false alarm, and that GOD it ISN"T melanoma! That goes without saying...


I got to go see the physical therapist for the first time on Thursday morning. Turns out I have quite a bit of muscle wasting, weakening and atrophy in my right thigh from favoring that leg (the one with the hip met). He could tell from the moment I walked in the joint that I had hip pain, because of how I walked...what a trip. Anyway, as I was doing all manner of leg lifts, he instructed me to put my hands one on each thigh in order to feel the difference in strength versus weakness. My right quadriceps muscle is basically mush. Not much strength left in that one whatsoever. Scary how quickly our muscles can deteriorate with a lack of use. My muscles in that leg had weakened so much that I could barely lift the leg itself much off the table.

And to think, I used to work out regularly until all of this...and I am still fairly young..at least *I* think so ;) HA!

Not only that, but my OTHER leg--the left one--is the one that I had the primary melanoma and all the sub-qs and in-transits, then ultimately a lymph node dissection with muscle cut/flap rotation and finally limb perfusion...So now THAT one is the "strong" one. How whacked is that?

Anyway, he is going to work with me and get me all set and back as close to my old self as he can. He said that he believed my knee joint/knee cap has actually been weakened due to my quadriceps muscle being so weak that it isn't holding my knee cap steadily in place...leaving it to rub and grind around above that joint, causing a lot of pain.

An another note...I have a new pain...and anyone who is a mel patient can definitely sympathize with this one, but ANY new pain whatsoever, especially at stage III or IV, is cause for a virtual panic of potentially epidemic proportions if prompt intervention isn't sought out...I now have a new fairly strong pain in one of my left ribs...It just came about a few days ago, and has been getting steadily more severe and more constant.

To say that this is flippin' me the fuck out would only cover half of it.

I am so worried that this PET on Tuesday is going to light up like a Goddamned Christmas tree. Hell.

Oh! Another cool and sweet thing my hunny did for me was to order me up a laptop/notebook computer for me to use while I am chained in my hospital prison for those few stints of a few days at a time. That is, if I am not feeling too much like dog crap at an estimated 212 degrees farenheit from the IL-2. The hospital where I will be receiving the IL-2 has available computer connection/access, so this will help me SOOO much...because aside from Ed, I most likely won't be getting too many visitors. It is so hard...Much of our family is still working every weekday, and my mom and dad have so many health issues of their own.

I know for a fact that they won't be making the trip...

And since I tend to get very VERY depressed in the hospital, this laptop is going to be a help. As I said, so long as I am not in a complete state of severe fatigue and loopiness and am at least, close to totally coherent--heheh.

I guess that is pretty much it as far as what has been going on here for now...

As always, I am moved so much by all the support, emails and comments I have gotten from so many of my fellow MPIP-ers and friends online, in addition to all the love and support from my family and friends so far....I know for a fact that I wouldn't be half as strong without it. No exaggeration.

1 comment:

Carver said...

Hey Shannon,

I'm so glad they figured out what was wrong with your knee and you have started P.T. It's too bad that isn't automatic and started before a problem gets so bad. Glad you've started it now and hope it helps a lot.

That's great that you are getting a notebook/laptop to stay connected during treatments.

I'm keeping good thoughts going for you and hope the scans and other test results will be in fast so you can at least have that anxiety out of the way.

I admire so much how you are handling all the punches you keep getting. I know with the help of your doctors and of course Ed's support you'll be delivering some knock down punches to melanoma.

As ever, Carver