Back on the Z

Jan 12, 2013 Dawn Melanoma 3 Comments

I’m back on the Zelboraf.

The CT scan results were not what I expected really at all.  I’m concerned about the fact that I was only off the Z for 3 weeks before more mets showed up. Waiting for the IPI to kick in. Hoping the one-two punch of Z and IPI will get rid of both the new and the old.

Next scan is the 31st and results on the 6th. Stay tuned!

Unexpected testing

Jan 2, 2013 Dawn Melanoma 3 Comments

{earlier}
I have now been at the Cancer Center for over 5 hours. I came in for my pre-IPI bloodwork and visit with the doc. Not only did I get that, I also got an X-ray and a CT scan!!
Turns out there is some concern about the abdominal pain I’ve been having and the tenderness, combined with the “mass” the doc felt, was cause for immediate action (especially since I’m due for my last IPI on Friday!).
I’m currently laying on the couchy chairs in the silent waiting room. Doc’s PA is waiting to see if they can read my results rightnow so we can move forward.
I’m starving (good thing I slept late and didn’t eat first today!) and bored, but obviously willing to wait if they can tell me what is happening tonight!
{later}
We were hoping it was appendicitis (sounds odd, I know) or even a bowel issue – truthfully, something that could be fixed with surgery as strange as that seems – but alas, it was not to be.

The wonderful PA he has kept calling and checking on the results until she finally got somewhere. The report of the scan said there was definitely a mass “a progression” of my cancer. [I failed to ask if they thought new growth or old regrowth, so sent email right away].
I am re-starting the Zelboraf and going ahead with the last IPI on Friday. While it generally takes IPI some time to kick in, and it sometimes gets worse before it gets better, we’re being proactive.

Another scan in 3 weeks.

The In-Between Times

Dec 23, 2012 Dawn Melanoma 1 Comment

I’m sorry I haven’t been updating here very often.  I think I just get tired of typing out all of the things that hurt or bother me. And if it’s bothersome to me, I’m sure it must annoy you guys, too.

I had IPI#3 a week ago last Wednesday (the date escapes me and the calendar is too far away to see). I was taken up to the research floor – smaller room, less chairs, MUCH longer wait.  Although, the wait had more to do with the fact that I needed a fresh blood draw and that the pharmacy took an hour and 15 minutes to mix my drugs than the location.  It went fine, but it was a VERY long day.

My side effects have definitely changed since being off the Zelboraf. I still have an odd rash on my legs, but my foot sensitivity has decreased dramatically. My skin is still sensitive to poking or scratching, but getting better.  The other noticeable thing is this slight numbness in my big toes. Random and weird, but that’s just me.

I’ve had terrible upper back and stomach (abdominal) pain ever since the day after, but no one is concerned.  I finally had to get a prescription for some 800mg Motrin and it seems to be working, for the most part. I’ve also had some significant pain in the area where my rogue lymph nodes are, and I’m guessing it’s part of the whole “things could get worse before they get better” aspect of the IPI. The getting better part could start ANY time now.

It’s nice to have my appetite back and not be nauseous all the time though!

Now it’s just waiting time – I have IPI#4 on the 2nd of January (Happy New Year!) and then I’ll get my scan about 3 weeks after that. Fingers crossed for continued shrinkage!!

Merry Christmas!

in my head i can do it all

Nov 26, 2012 Dawn Melanoma 2 Comments

I don’t feel like doing my journal on my ipad tonight – my eyes are ouchy, I’m queasy and I have a headache. Mike is asleep, the boys are asleep, I just finished the dishes after relaxing on the couch with a book for a few hours.

Yes, of course the dishes could have waited until tomorrow, but I wouldn’t have gotten to them until after picking up the boys and by that time of day I am just beat.  Add that to the “I don’t want to do my homework yet” and “I’m starving, what’s for dinner” whines, and I couldn’t do it.  So, I did them at 10pm.

It’s funny. In the morning and in the middle of the day, I feel like I can accomplish anything. My to-do list not only gets marked off, but things get added constantly. All of the things I could be doing while the boys have a snack and do homework? I have so many!  Yet, by the time four o’clock rolls around, I’m just done. The fatigue creeps in smacks me in the face, my side effects start in earnest and all I can imagine doing is being on the couch under a blanket. Today, with the queasiness, I could have been in bed, asleep, before 5.  Instead, I hung out in the family room, trying to interact with boys who were really too busy for me. So, I read. Near by.

I hate blaming my side effects  – maybe I’m just turning into a lazy old curmudgeon. In my head I truly believe I can accomplish all of my tasks though! I’m getting so frustrated with not finishing projects and time seems to be speeding up every day.

The soles of my feet have been bothering me for quite a few days. Someone said to me that they were sorry because it must “really interrupt my exercising”. After closing my mouth, I think I simply laughed it off. Yeah, that’s the problem with not being able to put any weight on my FEET. Nothing to do with not being able to walk or cross the room or dread having to get up in the middle of the night to pee or let the dog out; nothing to do with having to shuffle like a 90 year old or walk on my toes like I have a stick up my ass.  And certainly, it isn’t bothersome to dread the kids wanting to show me something in another room.  Yeah, it’s the exercise.

Look, I’ve said it before and I’ll say it again – I know people get sick of hearing it – my poor husband is a prime example. I’m sure he’d like it to be all about him for five minutes. But it sucks and just because I look like I’m ok doesn’t mean I’m not screaming on the inside as I walk toward you. And just because you can’t see it, it doesn’t mean that the lumps and cysts I have don’t hurt like hell.

I read a blog post from a woman whose husband has cancer again. She mentioned that last time he fought, they all grieved and fought and rallied with him; he was the brave one.  She said this time that she was going to hold her head high and be brave for him, try to maintain everything is ok.  I wish it worked that way.  There’s a fine line between a sense of normalcy and ignoring; a sense of fighting together and fighting alone.  I hope he tells her what he needs, because otherwise, he might think that she’s pretending nothing bad is happening, when truly, it is.

PS I know I haven’t written about my infusions or appointments lately – I’ll get to it, soon.