I'm so screwy - I know something inside my skull is going to be improved or it's not. Prayers, petitions to the Lord, wishing on stars (really!), bargaining with my Higher Power, positive imagery - nothing. It's better in the brain or it's not.
My concern is increased by my last month of trial by decadron - a miserable failure. I started April 'clean', having carefully - oh so carefully and gradually - weaned myself off the steroids. I could say I was cautiously optimistic. Then I noticed speech problems returning, and getting worse by the week. I became nearly mute 10 days ago because of the frustration of just spitting the words out, I could form concepts, I still read with comprehension - but emails (and posts) were a chore to be avoided. I actually started seeing double - like trails. But I'm stubborn - it took my sister to say "Whatever the long-term consequences you fear being on that decadron, I don't have the feeling at this rate, that you'll live to see them."
Wake-up call! Despite my wanting to get an accurate picture on my MRI I started back on the drugs.Then I doubled the dose. Then I doubled the dose again. Finally after about 9 days I was semi-coherent (emphasis on the semi-).
What does this say about the tumor? I can imagine there being a cluster right on my speech center. Or I have 'seeded' them all about my brain. Why doesn't my brain stop swelling? I have waited three (more- tx was 12/08) full months to see some result of tx - why can't I just get a little better? I start the scan about 9pm - that's at night. My oncologist and neurosurgeon (in LA) promise they'll both call first thing in the morning. Suuure - by the time I get past the messaging system, past the nurses - maybe by noon? My imagination is running away with me!!!!
And the damned steroids DON'T help!
Lisa
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GrammyNancy… Joined: Feb 2007 Posts: 596 |
May 7, 2009 04:33 pm
GrammyNancy wrote:
Oh Lisa....this sucks!!!! It sounds like Dr. G is getting things moving quickly and my prayers will be with you and him for guidance and knowledge as you make decisions. Stay strong girl! Love, Nancy Dx 2/5/2007, ILC, 2cm, Stage IIb, Grade 3, 1/7 nodes, ER+/PR+, HER2+ |
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barbe1958 Joined: Nov 2008 Posts: 5,194 |
May 7, 2009 04:43 pm
barbe1958 wrote:
You are in my prayers... Papillary Carcinoma with ITCs and IMLN, Bilateral Mastectomy Dec 16th/08 No re-con. No foobies.
Dx 12/10/2008, 1cm, Stage II, 2/13 nodes, ER+/PR+, HER2- |
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KellyC Joined: Oct 2008 Posts: 785 |
May 7, 2009 05:24 pm
KellyC wrote:
Always in my prayers (((((((Lisa)))))))) If life hands you a lemon, stuff your bra with it!
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LisaSDCA Joined: Jan 2007 Posts: 2,246 |
May 7, 2009 05:31 pm
LisaSDCA wrote:
It's already in the system for the dedicated brain MRI/CT scan but he did't put STAT on it. So the three business days for the radiologist to review it applies!?!? Since when do the radiologists have to review radiologist's orders! I called to request URGENT or STAT. The nurse was mot impressed. Lisa Stage IV mets to brain 11/2008
Dx 1/24/2007, IDC, 2cm, Stage IIa, Grade 3, 0/3 nodes, ER-/PR-, HER2- |
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Analemma Joined: May 2005 Posts: 1,712 |
May 7, 2009 06:27 pm
Analemma wrote:
Oh, crap, I'm sorry Lisa. I can't remember if you had gamma knife back in December. Is that what you will do now? How long since you had MRI? It seems to have popped up suddenly. Scary. I get my f/u MRI in three weeks. Damn. It's hearing stories like yours that I'm really glad to live in Cleveland, and get treated at the Clinic. When I go for an MRI, I wait there for the report (20 minutes) and carry it away with me. Children are the living messages we send to a time we will not see. --John W. Whitehead
Dx 12/10/2007, IDC, 2cm, Stage IV, Grade 3, 5/12 nodes, mets, ER-/PR-, HER2- |
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TenderIsOur… Joined: May 2007 Posts: 4,341 |
May 7, 2009 06:37 pm
TenderIsOurMight wrote:
Dear Lisa, I'd venture to say your scan will get read pronto rather than in three days. You can review the clinical facts on the written form (and write in please fax 'wet read to Dr....) and specifically state the agreement must be the report will be entered immediately and faxed/emailed/personally reviewed with the ordering physician. Don't get hung up on the number of days: this can be circled around even by your own doctor. I sense the timeline to treatment is bothering you most. I've not followed long enough to understand the San Diego vs LA, although understand the latter is larger and there is a large Kaiser center there (my friend successfully received colon cancer treatment years ago in an advanced stage). So, I'm just thinking that since Dr. Gr is rightfully concerned about the seizure risk, that his concern stems from time to treat some too. In these circumstances, there is always the back up headache or feeling funny complaint to open the treatment door faster. Even intolerance of medicines can do this. You have a right to get treatment asap, so please don't let the lag time to studies trip you up. Perhaps your sister could help you straighten this out and be the driver. You need to be with someone, driving you here and there, and helping to over see you day to day needs, meds, and push for timely treatment as your plate is full with absorbing the news, staying calm and being the patient. Sounds to me that it wouldn't take much for Dr. Gr to admit you and get your treatment strarted, but then, what do I know. My best to you Lisa, Tender It cannot be emphasized too strongly that treatment of each patient is a highly individualized matter. (FDA-approved labeling for warfarin (Coumadin) NDA 9-218/5-105)
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navygirl Joined: Jan 2009 Posts: 411 |
May 8, 2009 07:27 am
navygirl wrote:
For anyone who remembers the "shovel brigade" from the road to hell thread...I think it's time to visit San Diego and assist our Friend Lisa in kicking some BC butt! I'm soo, soooo sorry Lisa - I can only imagine how stressful this is for your right now...I wish I had the superpowers to blast those lesions/tumors to kingdom come! ((((HUGS)))) sending you lots of love my friend.... life is short, play hard
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k4katz Joined: Jul 2006 Posts: 551 |
May 8, 2009 08:57 am
k4katz wrote:
Hi Lisa, I don't have any words of wisdom for you but just wanted to post a quick note to let you know you are in my prayers! *Hugs* Kristin www.dichroicglassmusic.com
Dx 6/21/2006, IDC, 1cm, Stage II, Grade 3, 1/3 nodes, ER-/PR+, HER2+ |
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LisaSDCA Joined: Jan 2007 Posts: 2,246 |
May 8, 2009 02:08 pm
LisaSDCA wrote:
Shovel Brigade? That's not a bad idea - but it needs to go directly to LA. Late last night, after I a had couple of friends over to soothe my irritated vexations I managed to read the ENTIRE radiology report. It was sent by end of business by a Dr.L. - the "on-call'' onc. at the local hospital. Bless her hear! This entire radiology final report was supposedly read to me by the esteemed Dr.Gr. in LA.. I asked him specific questions (after the shock of the new temporal lobe tumor) about the 'residuals' from my treatment in 12/08. He said absolutely nothing except confirmed that I was taking my meds. The temporal lobe mass takes up one paragraph in the report. The %#$&!$ original lesion takes up five long paragraphs!!! My jaw dropped to my shoes. The simple explanation (my daughter said I need to speak English!) is that is has grown, expanded to the other parts of the brain. The size measured on the current scan is 3.1 x 2.3cm as contrasted to the 2.x 1.6cm of the previous study - roughly TWICE the size. There's more... the enhancing rim (the active part) of the tumor is thicker measuring 9-10mm.vs the Feb study of 2-3mm- roughly FOUR times the active tumor size. The edema has substantially increased, midline shift of 3mm.(pushed my brain tissue out if whack). and suspicion of left frontal lobe involvement due to the displacement of sulci and fissure on the left; there are more alarmist writings with the stressed clinical correlation (definitive MRI/CT/PET whatever, they don't seem to understand inti in Nuc, Med or Radiology). It's gotten me on the phone to Dr,Gr in LA to see WHAT excuse he had for not reading me the final report. Didn't he know I'd have it!?! And that I know anatomy. And that I know BIGGER when I see it, nonetheless!?! He isn't in until afternoon. I had confidence in him, but it's really been shaken. Oh, I'm sorry for the rant - I was just livid. Good news: I went to bed with three ativan and a xanax on my bedside table and I got seven hours! Lisa Stage IV mets to brain 11/2008
Dx 1/24/2007, IDC, 2cm, Stage IIa, Grade 3, 0/3 nodes, ER-/PR-, HER2- |
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sjack827 Joined: Mar 2007 Posts: 436 |
May 8, 2009 02:27 pm
sjack827 wrote:
Lisa I'm so sorry that report wasn't very good. I know you're upset and angry at the Dr. but I do think the Dr. was trying to softpedal the results -- maybe he was trying to keep you from being upset. Again, I'm sorry and I hope the ativan and xanax continue to help you sleep. |
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barbe1958 Joined: Nov 2008 Posts: 5,194 |
May 8, 2009 03:24 pm
barbe1958 wrote:
Lisa, glad you got your 7.... Sorry about the insistence of your tumour. Sheesh! I'm pretty sure once they start to move on you it'll get a lot of attention. Don't forget to update us in this thread so we don't have to hunt you down all over the board! You are still in my prayers.... Papillary Carcinoma with ITCs and IMLN, Bilateral Mastectomy Dec 16th/08 No re-con. No foobies.
Dx 12/10/2008, 1cm, Stage II, 2/13 nodes, ER+/PR+, HER2- |
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Analemma Joined: May 2005 Posts: 1,712 |
May 8, 2009 03:58 pm
Analemma wrote:
Well, hell. I guess you can say that this certainly explains any speaking and cognitive diffuculties you've been having. Your anger and frustration are in order. Give 'em hell! Children are the living messages we send to a time we will not see. --John W. Whitehead
Dx 12/10/2007, IDC, 2cm, Stage IV, Grade 3, 5/12 nodes, mets, ER-/PR-, HER2- |
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VickiG Joined: Jul 2008 Posts: 535 |
May 8, 2009 04:12 pm
VickiG wrote:
Lisa I just don't even know what to say... I, like everyone, am so upset for you!!!!! I hope things improve now that you do know what is going on, but wow am I upset about everything you have had to go through... and I seriously want to go smack the crap out of your doc!!!! Just know we are all here for you ~ always will be. Love & hugs, Vicki Vicki
Dx 6/9/2007, IDC, , Stage IV, Grade 3, 10/14 nodes, ER-/PR-, HER2- |
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sahalie Joined: Jul 2006 Posts: 2,758 |
May 8, 2009 04:28 pm
sahalie wrote:
Lisa. I keep up with you on your great group of San Diego girls. I up north above San Francisco. Your writings are fantastic. Write as much as you can because you are truly a gifted writer. I'm just so sorry you have to deal with all this. I agree whole heartedly with Barbe. Once the docs get started on your treatment you will be on a roll. I always enjoy the San Diego lunch group photo's that SoCal shares. I want to see you back in those photo's as soon as you feel better. Keep writing. It's a gift. Glad you got some sleep. I took ativan during chemo and it's a little helper with huge results for some peace and relaxation. Love to you Lisa. Sahalie |
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MissShapen Joined: Feb 2007 Posts: 6,195 |
May 8, 2009 04:39 pm
MissShapen wrote:
Lisa, I am so sorry. Lots of love and big hugs coming your way.... :( Miss S "Be kinder than necessary, for everyone you meet is fighting some kind of battle."
Dx 11/9/2006, IDC, <1cm, Stage IIIa, Grade 3, 7/31 nodes, ER-/PR-, HER2+ |
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Fitztwins Joined: Dec 2004 Posts: 7,730 |
May 8, 2009 04:57 pm
Fitztwins wrote:
Holy crap sista! WTF??? First, I hate FALSE hope. Hate it. I rather deal with the bad and let good news be a pleasant surprise. Remember no matter how bad things sound right now...it can be treated. You can do this. Take all that anger and channel it into recovery. It seems we have to stay on these doctors like a wet diaper on a cranky baby! Hang in, hugs Janis Wash away my troubles, wash away my pain, with the rain of shambala
Dx 12/12/2004, IDC, Stage IV, Grade 2, mets, ER+/PR+, HER2+ |
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nash Joined: May 2007 Posts: 2,141 |
May 8, 2009 05:14 pm
nash wrote:
Oh, Lisa, <<<<<<<<<<<HUGS>>>>>>>>>>>> Dx June 2007, age 38, Stage IIa 2.7 cm pleomorphic ILC, ER+/PR+ HER2-, CAFx6, rads, Tamox, Zometa
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jeanne46 Joined: Nov 2006 Posts: 1,038 |
May 8, 2009 05:29 pm
jeanne46 wrote:
Lisa - am almost without words at the moment. So upset that Dr. Gr. wasn't upfront with you and so saddened that you have a serious battle right now. If anyone can deal with this, YOU CAN. We are all here to hold you up through this ordeal. Glad you figured out the ativan/xanax mix. You need to be in LA right now! Hugs, Jeanne Handle every stressful situation like a dog - if you can't eat it or play with it, pee on it and walk away. Dx 12/2005 Stage IV, Grade 3, mets ER+ PR- Her/2 (2+)
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BMD Joined: Jul 2006 Posts: 1,945 |
May 8, 2009 06:53 pm
BMD wrote:
Hugging you sweety. We think our doctors know us and relate to us but then we find out we're just another cancer patient. One of many they see everyday. Sucks. We are all in God's caring hands, BrendaBMD
Dx 7/14/2006, IDC, 2cm, Stage IIa, 0/10 nodes, ER+/PR+, HER2- |
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sushanna1 Joined: Feb 2003 Posts: 742 |
May 8, 2009 07:11 pm, edited May 8, 2009 07:12 PM
by sushanna1
sushanna1 wrote:
Lisa, Rant away. That's what we are here for. This is ridiculous. I hate it when doctors "soft pedal" things. Don't they understand that you will eventually read the report? I am so sorry that things turned out this way. As the song says, "keep on keepin' on." Sue |
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Traci-----T… Joined: Apr 2007 Posts: 1,998 |
May 8, 2009 11:53 pm
Traci-----TripNeg wrote:
Just now saw this, post PM. SH*T!!!!!!!! You know how we all sit for a second, or 20 minutes, after reading a post like yours, thinking of what to say? Well, you know what I finally thought of? It really pisses me off to hear non-cancer people bitching and moaning and groaning about the so not important shit going on in their lives! Don't you just listen and then laugh on the inside? They've got no clue. No F*ing clue. Just today, I was listening to a girl (women) bitch about her husband and the fact that he insists on watching t.v. while he falls asleep. And her cousin, who is constantly asking her for money and putting her in an "un-imaginable mental state". WTF? She is completely clueless. If only that were our biggest problems. If only. Lisa, I can imagine how you must feel right now. I am sorry beyond words. Don't give up the fight girl. Love, Traci PS: Sorry about my trash mouth. Trip Neg BRCA + If I never look behind me, my troubles will be few. Supertramp.
Dx 2/12/2007, IDC, 6cm+, Stage IIIb, Grade 3, 0/14 nodes, ER-/PR-, HER2- |
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LisaSDCA Joined: Jan 2007 Posts: 2,246 |
May 9, 2009 06:20 am
LisaSDCA wrote:
I went to bed. Got three hours. Dr.Gr. did 't return my call, all yesterday. Coward. But I got scheduled for treatment in LA, going up Tues night and coming back Fri. morning, It all depends if I get the PET scan Mon. or Tues morning down here - what do you think the chances are of that? Dr, Gr, couldnld't get straight WHAT test he wanted down here and then put the orders in the wrong system.AARRGGHH! And then it was Friday afternoon. I'm so frustrated. And disappointed. I really do think the original tumor was missed entirely - and has been growing unabated for a year. It's a wonder I;ve got any brain function at ALL! Lisa Stage IV mets to brain 11/2008
Dx 1/24/2007, IDC, 2cm, Stage IIa, Grade 3, 0/3 nodes, ER-/PR-, HER2- |
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LisaSDCA Joined: Jan 2007 Posts: 2,246 |
May 9, 2009 06:30 am, edited May 9, 2009 06:31 AM
by LisaSDCA
LisaSDCA wrote:
This Post was deleted by LisaSDCA.
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LisaSDCA Joined: Jan 2007 Posts: 2,246 |
May 9, 2009 04:08 pm
LisaSDCA wrote:
I just got taken out to lunch at a nice little cafe, sitting in the sun. After the initial queries we didn't speak about cancer once. It was wonderful! Just thought I'd add that since baaaad news has been following me for a coupla days. Lisa Stage IV mets to brain 11/2008
Dx 1/24/2007, IDC, 2cm, Stage IIa, Grade 3, 0/3 nodes, ER-/PR-, HER2- |
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barbe1958 Joined: Nov 2008 Posts: 5,194 |
May 9, 2009 04:10 pm, edited May 9, 2009 04:11 PM
by barbe1958
barbe1958 wrote:
Glad you had a break! Good luck on Monday. Will you be able to keep us posted? If not BIG [[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[[ HUGS ]]]]]]]]]]]]]]]]]]]]]]]]]]]]]]]]]]] Papillary Carcinoma with ITCs and IMLN, Bilateral Mastectomy Dec 16th/08 No re-con. No foobies.
Dx 12/10/2008, 1cm, Stage II, 2/13 nodes, ER+/PR+, HER2- |
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luvtotravel… Joined: Sep 2008 Posts: 932 |
May 9, 2009 05:57 pm
luvtotravel wrote:
Lisa, Try to enjoy your Mother's Day weekend and go in fighting on Monday. (((HUGS))) luv2travel
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whoopsiedoo… Joined: Sep 2005 Posts: 2,618 |
May 9, 2009 06:20 pm
whoopsiedoodles wrote:
Lisa, Holy Crap, girl. I just read this entire thread, and I'm just irked for you. Holy Crap!! I WILL be RARE, and I WILL be MIRACULOUS!
Dx 9/29/2005, IDC, 6cm+, Stage II, Grade 3, 0/7 nodes, ER-/PR-, HER2- |
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Fitztwins Joined: Dec 2004 Posts: 7,730 |
May 9, 2009 06:26 pm
Fitztwins wrote:
I get SO tired about talking about cancer.. I went to a lunchen with my mother for martyr day. 1/2 dozen folks asked "how are you?" I should have stood up. I am fine!! feeling good. Wash away my troubles, wash away my pain, with the rain of shambala
Dx 12/12/2004, IDC, Stage IV, Grade 2, mets, ER+/PR+, HER2+ |
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Isabella4 Joined: Mar 2005 Posts: 1,845 |
May 9, 2009 07:49 pm
Isabella4 wrote:
Lisa ((((((((((((((((Hugs)))))))))))))))))))) Thinking of you. Isabella. Dx 5/14/2003, IDC, 1cm, Stage I, Grade 1, 0/26 nodes, ER+/PR+, HER2- |
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Shirlann Joined: Feb 2002 Posts: 7,043 |
May 9, 2009 08:33 pm
Shirlann wrote:
Oh Lisa love, I know you will feel my arms around you as you journey this horrible road. Modern Medicine, hummmph. I think about you and hope the news that comes is better and you feel better. Hugs and kisses, Shirlann |
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