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.
2/29/12 Sinus CT Scan
3/07/12 Scheduled surgery for blocked front sinuses for 3/12/12. Went to hosp. for pre-op tests.
3/08/12 Chest xray showed something new. Had a Chest CT scan done right away.
3/09/12 Spot on upper left lobe of lung. Cancel sinus surgery & go to pulmonary dr. Need to get PET scan done.
3/13/12 Golf ball size mass in lung. Probably cancer. 2 spots but one is small and from an old injury (been there for 3 or so years).
3/19/12 PET Scan
3/20/12 PET scan shows cancer in both spots. Need biopsy & surgery to remove part of lung.
3/23/12 Needle biopsy through back. Lung collapsed. Admitted to hosp. (in 8 days) Stopped smoking (DUH)
3/27/12 Biopsy results, family conference. Malignant adenocarcinoma, NSCLC. Curable with surgery. Not sure about small spot - will know after surgery & path reports.
4/03/12 Met w/thoracic surgeon. Need Pulmonary functon test. Not cardiologist though.
4/10/12 PFT & Lung Scans. Lobectomy surgery set for 4/23/12 w/Scheinin at Methodist.
4/20/12 Broke out in Shingles. Postpone surgery for a week.
4/30/12 Lobectomy - remove ULL. Methodist Hospital.
5/03/12 Atrial Fibulation common because of surgery. Heart monitor on. Having trouble w/pocket.
5/05/12 Home. Got path report - adenocarcinoma & squamous (small spot) both in ULL. Cancer free. Not in the lymph nodes. Staged at IB.
5/15/12 Follow-up w/Dr. Scheinin. Need oncologist for preventative care. Cancer is gone though.
5/23/12 Birthday & Bella's kindergarten graduation. Having trouble walking, balance, moving. Brain & body not meshing at all. Pain meds? Epidural after effects? Not sure this cancer is really gone.
6/06/12 Go to PCP to do neuro check up. Failed miserably. Using cane to walk. Alien left arm syndrome
6/11/12 Brain MRI at So. Loop Imaging
6/12/12 Go to PCP for MRI results. Baseball size (6cm x 4cm) tumor in brain. Moves me to Stage IV. Need neurosurgeon. Life threatening.
6/13/12 Met Medical oncologist. Says need brain surgery.
6/15/12 Neurosurgeon. Can't do surgery until 6/27 because of privileges at MH Mem City.
6/18/12 2nd opinion neurosurgeon. Can do surgery on 6/20/12 at St. Joseph's. Losing movement each day.
6/20/12 Image Guided Craniotomy, bilateral. (Right posterior Parietal Occipital lobe)
6/24/12 Home from St. Joe. Can't be left alone. Therapists & nurses to come over. Need Radiation.
6/26/12 Met w/ radiation onc. dr. Need WBR w/Boosts.
6/29/12 CT Scan at St. Joe because of bad headaches
7/02/12 Radiology Oncologist 2nd opinion. Said same thing as 1st but at MHNW.
7/06/12 Radiation simulation set-up.
7/09/12 PET Scan - No evidence of new tumors in rest of body.
7/10/12 Radiation begins. Stitches removed at Neurosurgeons. Left a piece of tumor in there. Too dangerous to take out? 10 treatments & 5 Boosts
7/27/12 Finished WBRT