LC, Brain Metastisis & Craniotomy

[Danhole]

My last journal entry was about the cancer spreading to my brain, the trouble i was having walking, moving, my alien left hand, etc. Not exactly sure where left off but I need to share what all has happened, get some support and vent a bit. If I repeat myself I'm sorry. Thoughts are a bit jumbled.

Had craniotomy 6/20. Tumor was very large, life threatening and each day I was losing a little more movement. My pulmonoligist and the neurosurgeon had worked together before, so I thought that was a good sign, even though it was at yet another dif. hosp., the 3rd one since March 23, 2012. It surely seemed to be a brain met from the LC but how long had it been there? It was certainly growing quickly at the moment. No options for anything but immediate surgery. I had some appts set up for onc. drs, but all that had to be put on hold. MDA would not even talk to me until I was out of the hosp w/path reports.

Surgery went well, got practically the entire baseball size tumor out in good time, in one piece, way quicker than expected, and everyone is giving me kudos for being such a miracle patient, coming to shortly thereafter, talking just fine and having a hearty appetite and smile on my face. No tumor but still cancer cells that need radiation. Uh, okay. I'll get on that as soon as I figure out how to work the telephone, thank you. Spent 4 days in ICU, then got moved to reg room. Would have been moved sooner but no reg rooms available, and I didn't feel confident w/o catheter because still having loads of trouble with coordination, direction and my wacky left hand. Since the surgery was on a Wed morn, think the dr wanted me out of there by Sat., but frankly I was not ready to go home. Scared the crap out of me to even consider it. I may have looked good but sure didn' feel it. I had 1 session w/physical therapist, 1 w/ occupational therapist, and then the dr took me off most of the pain meds. Okay . . . His thought was mind altering drugs could affect brain function, hence movement. BUT I went into all of this with chronic headaches from TMJ (broke right jaw as a child and it was never reset), chronic sinusitis that I have needed surgery for and has been blocked for probably a couple years so that pain is above my right eye and feels like an ice cream headache that won't go away and I have had since 12/09, every single freaking day of my life. Yes, now lets take a piece of bone out of my head, remove a tumor, screw the bone flap back in (and howdy boy is there a couple sore spots you can see from where they screwed my head into frame), keep me pumped up on the steroids which give me awful headaches anyway, and then totally confuse me by talking to me way too fast and toss in a smart aleck, although talented neurosurgeon who knows what he's talking about but I sure don't . . . But hey there, you look good, talk well, use the toliet and aren't vomiting or having seizures, so how about it? You aren't sleeping, you're in lots of pain, having crying jags, but HEY, you are going to have to work at this, ya know. Now pack up - you are going home! NO SIR! That was on Sat. afternoon, 6/23. Needless to say I had a bit of a meltdown, told my family to go away and leave me alone, wouldn't let the nurses in the room to check my vitals and cried like a newborn for a couple hours. I just had a lobectomy on 4/30/12 and stil am in pain from that, but all I can take is 1 tramadol 3x a day and 2 Fioricet every 4 hours. While I was still on the morphine in ICU, the nurses tried to keep me pain free by gving me the morphine while I was sleeping (if time permitted) so I could get some deep sleep. Otherwise I have hardly had more than 3-4 hours sleep at one time. for almost 3 weeks.

Came home 6/24, a Sunday, and someone has to be with me all the time. Home health care comes by as does PT, and soon OT. I just found out yesterday that there may be a couple new/residual tumors but I don't have the written report yet, just film from CT scan because of the headaches. The neurosurgeon's office is not being cooperative, in my opinion, but I know summertime vacations don't help! My rad. onc showed the films to a diagnostic rad. and told me about the new/residual spots. He also has me scheduled for a new PET scan on Mon, and I think on Fri. I will have the rad. simulation, scan set up done. It will be WBR with a boost to the large tumor sight. Not sure about the new spots. I have gotten more than one opinion and they say the same thing. Did not realize I had to see totally dif. onc for chemo, but I do now, so I will get an appt tomorrow, I hope.

Thanks for all the support. I'll let you know.

Dani

[RandyW]

much love and hugs and prayers Dani! good to see you posting!! hang in there!!

[dianew]

Keeping you in my prayers. Cancer sure isn't for sissies - you are tough - hang in there.

Diane

[curlysue50]

Dani:

I hope you feeling and doimg better. You have been in my thoughts and I have been meaning to post some encouraging words. I have been dealing with some issues of my own that seem so small in comparison to what you are going through. I feel grateful to be doing as well as I am, but have been experiencing some anxiety about scans I have coming in August. I have been having some pain, lack of appetite, and nausea issues which could just be medication side effects, but it terrifies me to think of what could be coming if my cancer is on the move again. I have not had any surgery, like you. I really admire your strength and it is perfectly okay to "lose it" in these situations. These are very hard situations and we are still human as we experience them. Having cancer does not mean we can not express pain or sadness when we are feeling it. We can and should. Hopefully you have good support, it sounds like you have family around you. Keep up your good attitude and if you have a meltdown once in awhile, that is okay. As stage IV patients we have MANY emotions to deal with. Ask for support. Talk to family and friends. Share here at LCSC. Chances are if you are feeling something that is hard to define, that there is someone else in the lung cancer survivor community who has been through something similar. In sharing you are building your own strength and acceptance and are also providing hope for someone else. You are in my thoughts and prayers.

Susan