Danhole

Susan, I had the first PET scan back in March, but no brain scan. They felt it was curable, I could have the surgery (4/30) and it would all be over in a few months. No big deal . . . Then came the brain tumor, the stage IV DX (6/12) & surgery (6/20) which was a metastases from the LC. The rad. Onc did another PET scan 7/9 to see if there was anything else in there before he started the rad on my brain, and that was clear, thank God! I am compiling a bunch of questions for the reg. onc before I go any further with this. I appreciate all the input. I am still having enough issues w/mental confusion and fatigue so it helps to see the questions you are asking me. At this point he has said we should get going, but not a whole lot else. But I think he is approachable.

I feel like the WBR really took a toil on me. Since then I have had so much fatigue, stuffy ears, radiation burns around my ears and on scalp, no hair, a lump on the surgery incision that was biopsied, no results yet. My face started swelling on the surgery side, and the lump started leaking fluid. Also my pain from the lobectomy has moved and really hurts a lot, but had an X-ray to check the ribs - no results yet . . . And to top it off I am either having bad allergies or a summer cold with a cough. I was being weaned off the steroids but w/all the other stuff going on he put the dose back up. I should have called him (rad onc) already so he can redo all that but I just haven't.

After my lobectomy, and being a stage 1B NSCLC survivor to being a stage IV with a large brain tumor requiring a carniotomy, I have been pretty freaked about the brain tumor thing, knowing there is still a piece of it in there. So my focus has been on whether or not chemo wouuld work on my brain. Well as of last Fri. (8/10) the onc. told me that we need to look at the fact there is cancer floating around in my bloodstream and we need to get that stopped before it spreads anywhere else. Now I have a proposed protocol but I am tired! All of this has happened so quickly, IMO and I feel confused, disoriented, sleepy, depressed, and still having pain. I would like to take a break to recover from one thing before I move onto something else. it seems like I have half of the side effects already. So, in your opinion or experience, is it okay to take some time off to recoup or should I be pushing onwards to get going on the chemo, having a port o cath put in being the first step? Thanks all. Hang onto hope. Dani

I have TMJ (jaw joint) trouble which can cause pain in my ear, neck, head, teeth, side of face, and a general feeling of yuckiness. An easy way to see if it could be caused by this joint is to put your finger in your ear and then open and close your mouth/jaw. If you hear aclicking, or feel a grinding, uneveness in you ear then it could be TMJ. I know that when I am really tense I clench my jaw unconsciously which causes all those muscles to tighten up, then the pain sets in. Having to deal with cancer has caused me considerable stress and I have to watch how I hold my mouth/jaw to relieve some of that pain. I could be way off telling you this but thought it might be of some help. Hope you find an answer soon. Dani

Susan, I really appreciate you posting this "just for me" at this time. I went from a stage 1B to a stage IV ON 6/12/12 because of a large brain tumor. i kinda, sorta knew what that meant, but didn't have time to dwell on it - had to get that tumor out before it killed me, and I could feel myself slipping every single day. It is scary to be in recovery for a lobectomy and then, in a matter of days, lose the ability to dress oneself amongst other frightening things. Now, post craniotomy, i am still not moving well, in pain, losing vision, can't be left home alone, etc. And I am really doing remarkably well under the circumstances. I keep hearing that I am young (55) and healthy (no diabetes, kidney or heart disease) BUT I heard that first radiation onc. say that I am not curable. That we will focus on my quality of life from here on out, but no cure . . . really don't think my sweet husband heard that at all, and I kept my mouth shut. Now I have seen a second rad. onc, and he is saying the same thing, but there are some new developments that don't seem very good. I will have a PET scan on Mon. to see where else this cancer may have gone, then begin WBR on Tues, the same day that my stitches will come out of my head. When I heard the urgency to get the new scan and start the treatments asap I lost it for a bit, but my 34 yr old daughter was with me and I couldn't do that to her . . . my husband practically ran away at the news, it scares him so bad. I have not asked for a "timeline", yet. I have been given a mission from God to keep my eyes on Him and be an example for my family, living each day in faith and sharing my life and love with everyone i possibly can. I have been sick for a few years, but never knew what was wrong. Now we have some answers and even though they aren't what we expected, they are answers, and I have been wanting some of those. Miracles do happen everyday but i have come to see that there are miracles in the tiniest things, and I need to share and appreciate them. I believe that this is a learning experience for each of us and we will come out of it better people. If I have to have cancer I will do it in the best way possible. I will spend quality time with my family and friends, get my ducks in a row and live as healthy a life as I can under the circumstances. I have people all over the country praying for me, and they are praying for a cure, a healing, which I appreciate so very much, but all I want to do is truly LIVE each day and God is helping me do that. Today I loaded the dishwasher for the first time in a month - what a thrill! Hahaha! No joke, it was. The fact that I can even type is a miracle. This is a miracle for me just to be able to share with you. So I HOPE this peace from above keeps my Spirit lifted the way it has been since I heard Stage IV, and I HOPE that every cancer patient can rest assured that no matter what comes, they are being loved, comforted, prayed for and God is with them through it all. I also HOPE I can spread this feeling of peace, and maintain it in my heart as well. This is not easy but I am armed and doing all I can for each one of us. Love you all, Dani

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

I thought I had a stroke but the ataxia and movement trouble I have been having are because there is a 6cm by 4 cm tumor on the right back side of my brain.i had the MRI yesterday. The dr. said this changes my status from 2 to stage 4. I had an appt set, to see the onc. on 6/21, but that has been moved up to tomorrow at 9am. I am shocked, numb, scared and confused. After my surgery there was no particular reason to rush to the Onc. and I was told I was cancer free. . . . well, that is not true. the MRI shows that. At least this got me into the onc. office sooner. Wonder what will happen next.

I do have an appt with onc. On 6/21. also have appt w/ pulm. Dr on 6/12. Now I really can't afford to go to both of them, so in your opinion who is the most important at this point? Thanks for the prayers. We sure need them! Dani

Well, dear LC friends, I found out that I have had stroke. I don't know any details, but I think it happened as a result of the A-fib. I will have to get a brain MRI to see what is going on. You can't look at my face and see signs of stroke, but I am having a terrible time walking, getting dressed, and thinking. My brain is not communicating with my body very well, and I had thought it was from the pain meds, or after effects of anesthesia/epidural meds, but it is not getting better and I am not on that much medication. I had to go to my husbands primary care dr, who did some tests on me in the office. The damage is done, but it could be worse. It is frustrating, of course, and my husband is having to help me with so much. I haven't even gone to an onc. Dr yet and I am already a mess. So, I will let you know what happens next. Please pray for us. Dani

it's been a month since my lobectomy and the pain is getting better. I am sill not sure what the next stteps are. My followup visit with sugeon was somewhat of a letdown because i did not get any clear direction about what to do next. It is up to me if I want to see an oncologist. He said "it was probably a good idea" but that was as far as it went. my xray was amazing, as you really couldn't tell any prt of my lung was gone. He told me that if I had trouble I could come back to him, and I really didn"t need to go back to the pulm. dr. he also said not to worry about the dif. types of cancer - no big deal . . .so i hzve sn appt w/onc I met when I was first diagnosed in the hospital but that won't be until 6/21. i don't know if this nonchalant attitude is typical, or in order not to scare me or what, but it is driving me nuts. My sinus trouble has flred back up so my horrid hedeadaches are back and worse than ever. I still need to have sinus surgery but i am not sure if now is s good time to try to do that. I do not want anymore pain just yet. I really need a personal assistant to go through all of this for me and tell me what to do next . . . Haha! Iam having some trouble with balance, and my depth perception. Not too sure what that is but hoping it will go away when I totally quit taking the pain meds. I came home from the hsp. w/a case of A Fib. but tht seems to have cleared up. All in all it seems to be good news I guess.

I had the lobectomy on the upper left lobe on 4/30/12. I think it ended up being staged at 1B, which is what I gather after seeing the pathology report. There were 2 tumors in there. The larger one was adenocarcinoma, and a small one was squamous. I have seen the surgeon for followup but no one else. I am not sure who I should go see first; the pulmonary dr., the ENT (sinus pressure is back and causing pain) or an Oncologist. I just had a birthday but really wish I could have put it off for a month or so because I am not feeling very well yet. Lots of pain, confusion and just generally out of sorts. I think the surgery kicked my butt more than I thought it would. BUT the cancer had not spread to the lymph nodes so that is really good news!

Thanks Randy. I will ask tomorrow. The pain is very draining and I do need help with it.

Thanks Muriel. I will be getting in touch with MDA soon. I have an appt with surgeon for follow up tomorrow. Maybe he will let me know what my cancer is staged at. As far as the pain goes, I am in awful pain and have been complaining about it. I feel like my rib cage has been cracked in a couple spots. The only way I can escape the pain is to sleep but I only sleep a couple hours at a time.

Both of the tumors were removed. In the beginning my pulmonary dr said that she thought the cancer would be gone once the lobe was removed but we weren't sure if I would need chemo or not. It depended on the small tumor. The surgeon, before he discharged me from hosp on Sat., told me to get in touch w/pulmonary dr. and oncologist. My husband is against chemo, but I think that is because he is scared of what that could bring. I just want this cancer to be gone. I am in a lot of pain and just can't find a way to sit/recline or lay, to get comfortable. If I use the wedge pillow and lay on my back it's bearable but I have to stay in my bed for that to work and that drives me nuts, too. I am in Houston and have been told that it would be"silly" not to go to MDA, but I'm just not sure if that is the right place for me or not.

They removed the upper left lobe on 4/30. There was a tumor that had been biopsied so we knew it was adenocarcinoma, but there was a smaller one in there, and I didn't find out until the day I was discharged that it was squamous. What the heck is that about? Now what do I do? 2 different types of cancer in one lobe. The small one had been seen on X-rays before but always was dismissed as a scar. I had hoped that I wouldn't have to have any treatments, but looks like I will. Now I have to either go to MDA here in town or find somewhere else.