STEAM ROOM FOR ANGER
Comments
-
Lita- He is known to be very good. I attended a talk of his last week at Washington Hospital on helping preventing recurrence and it was excellent solid info. I'm with Dr. Vandana Sharma right now who is now affiliated with Stanford but should I recur, I'll probably switch to Dr. Lee.
0 -
Lita
Amen. Beautifully written--raw, real, intelligent. You are truly an inspiration and mentor especially for someone new at this, brand new as I am. You're an esteemed author of the book on How To Do It. Utmost admiration and respect. Many prayers.
Runor
Another gifted writer, and you have given me my mantra: peaceful acceptance not pointless positivity. This really works for me.
0 -
I have left BCO a few times because women are dying. I could not face losing them and missing them and I could not deal with my own fear of the reality.
This time I will not turn away.
I honor you and wish for you deep peace, dear Lita. And I hear your cries and anger, these go along with peace.... I understand the best I can.
I sit here trapped in a body where I literally am not able to laugh or cry - there are always coughing seizures, even when I speak a full sentence still. The Sjogren's does not give me real tears either. And for months I did not have a voice to even speak.
I understand being gripped by the beast. But I do not know the end fear, the end anger, the pain of letting go of life.
0 -
Lita,it is good to hear ou vent! There are so many reasons for you to be pissed! And I can't think of any better place,than here,to let it all out. It is possible,that if you get all,of this crap out,out and in print,you might sleep better,feel better and have a better grasp on what is happening to you. It's not only happening to you,it's happening to all who love you as well. Your heart breaks for your dd and dh. It's so effing frustrating!!!!
Just keep venting to us. Ten times a day,if needed. Someway,somehow, you'll have to find enough peace within yourself,to get through this in true Lita style. Head held high and mighty! These next few months,weeks,days will hold many special memories,for your dd and dh. You didn't have to choose WBR and harsh chemo. But you did. You did it for them!!!! You may not feel strong,but you are!!!! We love you Lita, let us help you! P.m. Me and just tell me off,if you want to. ❤️
Hugs to everyone!! Chelle.
0 -
Dearest Chelle,
Your msg brought tears to my eyes!!!
The thing is, after I reviewed and analyzed all my options, I realized I AM NOT READY TO DIE YET!
And ESPECIALLY not b4 Christmas!
The palliative care doctor doesn't think so either. He did say, however, there will come a time when the chemo Tx will be more destructive to QOL than just letting nature take its course. We will cross that bridge when we get to it.
I am in a MUCH better frame of mind today, knowing that I will be able to get ALL the "happy pills" I need to get me thru my "transition." Lots of options,,,morphine, methadone, gabapentine, etc. This is NOT the time to UNDER-MEDICATE, which the pal care dr thinks I've been doing. I told him that I just don't like to take a lot of stuff and feel all "drugged up." He said we can modulate the "drugged up" feelings by adding a little Ritalin to the mix if I need it. Better living thru chemistry for sure.
For now, it will just be baby steps....I need the most help with sleeping. I told him I don't want to take Ambien, and he said everybody focuses on the negatives of that particular drug, but no one wants to hear the success stories. And, hey, it's still on the market - wasn't removed from the standard of treatment for people - so I guess it might be worth a try if I need it in the future. I'll just have to dead bolt all the doors so i don't do any "sleep driving" like some people have done.....
L
0 -
Lita...You are making an impact on so many lives by sharing your story, strengths, challenges and grit. Thank you from this woman far away, connected by the BCO pages as I sit at my computer waiting to read your personal narrative and those of the many, mostly women, who post on this and other threads. These ground me to stories written daily, hourly, and at times minute by minute. Your non-fiction writing is not for the faint of heart but for the brave who are willing to open themselves to experiences both painful and encouraging. Thank you and thanks to each person connecting via this medium so that many voices can come to the forefront. Love from my heart to yours.
0 -
Lita- I know there is nothing any of us can say to comfort you. You are love and in my prayers.
0 -
Lita - plain old natural melatonin. I use 5 mg or is it mcg. But you can work up. It is very relaxing. Also lavender oil on a cloth at your bedside. No drugs that way if you like. I read somewhere on a thread here or Inspire ..... that it is used for breast cancer at the end stages, wish I could find it.
0 -
I've been thinking a lot about what you've written here these past few days. You're so right; there's this f'd up claim that you must feel a certain way so that the cancer doesn't come back or go elsewhere in the body. And if you're feeling sad or angry or anything other than strong or brave or positive well heck, it's no wonder you ended up here in the first place. It did resonate with me, especially, when you said, Runor, that you held the eyes of the man that you knew as his wife blathered on. I marvel at that because it seems so present, so I am with you, so you are not alone. It's really beautiful to be seen, isn't it? to be seen just as you are, in that moment. I keep thinking about being present rather than being positive. I fail at it all the time, but I keep trying to be here, making eye contact. And that means being present in whatever you're feeling if it's pissed or afraid or exhausted, so be it. Because also moments of joy or kindness or love or even just simple calm will come too.
I'll tell you, Freya, those big letters spelling ME over the skeleton's head made me laugh my ass off. Do you make your own memes?
Lita, you "teach the torches to burn bright"- yours is a light that will not go gently. God bless you, dear dear Lita.
0 -
Lita, I'm glad that you found a doctor who is willing to work with you on a mix of medications to meet your needs as they evolve. The situation just plain stinks, but it's good to have someone who seems to listening to what's important to you.
Lyn
0 -
Artista- so glad I stopped on this thread so I learned about Dr. David Lee, I'm from East Bay, Washington Hospital is a little far for me, (45 min), but it can work things out. If I have the needs I will look him up.
Lita - hugs ..... my sister in law cancer spread to her liver and bone and she got put into hospices, that was almost 7 years ago. She got kicked out from hospices, and she is still walking. She is a walking miracle. I hope that will happen to you also.
0 -
I can attest to a very kind compassionate caring staff at WH. I went through all my cancer stuff there. The infusion center is bar none. The RNs so so very kind and caring. Since it's the hospital, they have more than just snacks. Salads, sandwiches, breakfast boxes, juices, pop, I mean very nice. And the set up isn't hospitaly. Each room has a tv, wifi and a very comfy recliner. The "walls" are this really nice piece of glass with art on it, all in soothing kind of tan'ish colors. I get all my labs drawn there since I kept my port and the love and care they have toward their pts is something out of this world. Wish I could say the same about the front office staff of my onc office. Why people work in onc when they are clock watchers is beyond me. Dr. Dugoni was my bs, excellent and director of the women's center. My experience with WH has been overall very good. There have been times when you ring and the RN takes longer than usual to get to you when in hospital, but where doesn't have things like that that happen. After every visit to a doc in there or hospital, sx center, I'm sent a questionnaire on how they did and how they can improve. I really like this about this place. The hospital and group is small enough to get personal like that vs Kaiser or Stanford that are just too big.
0 -
Paulette - your SIL is a miracle, I believe in miracles. So wonderful for your family.
Artista - I would love to find a hospital or cancer center like WA. As I am feeling very unsettled w/o my oncologist here anymore. The new fill in that I love will only be here Oct and Nov then committed elsewhere. Am thinking of going to Alaska where my onc is now, he is training for more specialized cancer practice.
I posted this in Bonfire of the goddesses and decided to edit a bot and paste over here. This is me sounding off for all of us. I hope no one minds. I was thinking about the doctors that do not care or listen, some of them and the the breach of trust in the medical staff we want to trust, some we can and because of others we do not know anymore.... the endless testing and drugs and exhaustion and those who are letting go of life when I wrote this.... and it carries on.....
"For me, the inability to do anything, the cough that never ends, the headache that comes on around 7 ea evening due to the cough that never ends. My poor Newfoundland dog not being able to get on the sofa with me anymore or into the vehicle. I did order him some Phycox for pain/inflammation/joints and a ramp that may help if Hubby takes out the two back seats in center of Acadia Denali and leaves just the long bench limo seat for him. I miss my dog not going w us everywhere, and to me all days are the last chance, every morning is the last chance. And into the fire having to figure in that reality like it really is because it is. No playing with the reality, never know when the drugs will cause a brain bleed or clots or plural effusion or lung clot. Never know when it all changes. So many believe they have months or years and then wham, the change happens and life flips to every day being the last chance really the last chance. Last chance to watch clouds all day, last chance to take the dog for a drive to nowhere, last chance to drive around the lake with Hubby, last chance to go birding. I haven't had those hit yet, but some came and went without me knowing..... Someday I will get on my feet enough to take a walk again or go in a store again, or do a flea market again. But I did not know those were my last times when I did those activities. Up to now, they were the last. I just did not know. So into the fire the world of cancer reality closing in on us."
0 -
Artist - I live in Castro Valley so I go to Epic Care, great MO caring and he listens. Nurses there are great, it's a small office by now, I got to know all the nurses and got to know some of the people since it is an open area. My hubby and I talked about finding a smaller place in Fremont, because we love the area around WH. This is on our to do list once I recovered and get my strength back.
Bluebird - when I watched my brother got brain cancer and passed away in six months I knew we can't control our life. That was back in 2003. When I found out I have BC all I can tell myself is I put my life on God's hands. I do what I can do, but if it is time, what can I do?? I watched my SIL she is still walking and even gained 10 lbs the last year. All we can do to enjoy each day and thanks God for looking after us,
0 -
Artist - I live in Castro Valley so I go to Epic Care, great MO caring and he listens. Nurses there are great, it's a small office by now, I got to know all the nurses and got to know some of the people since it is an open area. My hubby and I talked about finding a smaller place in Fremont, because we love the area around WH. This is on our to do list once I recovered and get my strength back.
Bluebird - when I watched my brother got brain cancer and passed away in six months I knew we can't control our life. That was back in 2003. When I found out I have BC all I can tell myself is I put my life on God's hands. I do what I can do, but if it is time, what can I do?? I watched my SIL she is still walking and even gained 10 lbs the last year. All we can do to enjoy each day and thanks God for looking after us.
0 -
sometimes you're walking along in a life you have built and someone pulls the faith, and rug right out from under my feet. I am so sick already. To think that someone so close to you can ruin everything you thought was true. It's just not even worth. Living if the entire time you're left with is a big huge stress ball and anxiety ridden existing day to day never knowing when the other shoe will fall. YOu believe in people and they treat you like a dog. So surreal. So done
0 -
hugs micmel. i was out in a community event where we knew many people.. Most knew Im going through the battle. (5 weeks out of surgery chemo soon) anyway 1 person blabbed out that there was in fact a cure and they just poisioning us.. I gave her the look.. And explained that maybe her theories may not be the best for me to talk about. Then a guy we barely know.. Asked why was I there... "I thought you (people with cancer) werent aloud to get cold.. Friend of mine had to put on sweater just to go in fridge"... Wtf. I didn't even know how to respond to that lol. Then another friend did the old Omg so sorry to hear.. My dad was told he had cancer and in a few weeks was gone..im sooooo sorry are you ok?. Blahhhhhh lol I needed a slap stuiped stick.
0 -
MrsWinnie, those are items for the stupid things people say topic! You don't look sick? Sorry to disappoint. Next time I will mark , don't be fooled by the way I look, I have breast cancer," on my forehead with a sharpie so you will know. Putz
0 -
Micmel - hugs and more hugs, sounds like you have been through the fire of late. When you are ready to talk, we be here. Let us know now what we can do.
Here's a pretty picture. I posted it somewhere else and I really like it.
0 -
Blue~ and Mrs.Winnie~ thank you for the hugs and caring. Sometimes. My life (I know you understand) doesn't seem worth living. Everything is a struggle, people treat you completely different. But there you are alone and afraid of what's happening to us. The Same person, who hasbeen placed in a health jail cell with no way out. It doesn't seem right. ~M~
0 -
In retrospect, I wish I never told my coworkers about my cancer.
0 -
So my DH had his PSA tested months ago and it was over 7. Was supposed to redo it in 4 weeks but never did until last week. Now it's almost 11. Not good. Needs a biopsy soon as they can schedule it. The 17 year old has a lump in his neck that the doctor says could be cancer. He is having a ct scan next Friday.
Can't take much more cancer crap!!
0 -
Dianarose, that is a lot of crap to worry about. I hope it all turns out well for your family.
I have been thinking about you, how are you doing?
0 -
Dianarose...you really do have an oversize helping of C-Crapioli and sounds like it will be a long week or so before your son and husband get results. Of course hoping for good results and in the meantime look for as much emotional nourishment as possible ((( )))
0 -
Just confused. Anger follows and then confusion again. May I use this message to outline the crappy system I am trapped in. My daughter calls it medical tennis. Ready for the game?
- Radiation in April / May. Terrible lupus flare, terrible, lasted weeks. Thought that was reason for the discomfort. Also lupus people are best off not to have radiation, avoidance if possible, but I did not know that until long after the damage was done. Lupus since appx 1993. Huge photosensitivity and to fluorescent lights.
- Rheumatologist #1 end of May said I do not have rheumatic systemic tissue disease. Or lupus, didn't do anything but try to prove his point.
- My pulmonologist #1 just sent me back to my oncologist. Who btw was now in Alaska so onc #2 filling in.
- Cough like I had pneumonia. Had a lung xray that was clear. Myositis throughout trunk, lasted 3 weeks then quit hurting. Constipation like I have never thought could be possible.
- Oncologists are in here each month and trying to help.
- Rheumatologist #2 at least thinks there is something and orders a high definition CT of chest.
- What? really??! - she has radiation induced pneumonitis (inflammation, not infection).
- Rheumatologist refers me to cardiologist though, saying I have an enlarged heart and pulmonary hypertension. He prescribes prednisone 10 mg to help give relief.
- Cardiologist says nope, not that at all. Give up the organic Celtic sea salt. Come back on Oct 4th. Relief at least, about the PH and heart.
- I tell nurse at radiation and she tells RO. Who refers me to my pulmonologist.
- But goody the cardiologist (same afternoon) refers m to his pulmonologist buddy (my #2) who sees the high def CT scan of chest - or at least I thought he did, the report would be in my file and I had a copy in hand when I went the very next day. And he prescribes for me an antipsychotic drug that is known to 'somehow' stop the cough reflex. Unfortunately, I Googled and found it can excite lupus or induce lupus, I only took 3 pills before that and quit. May I add, idiot. anyway.... He prescribes a new inhaler. He prescribes Pepcid AC because he thinks cough is due to acid reflux. And come back in 3 weeks.
- I have a reaction heart thundering / hives to the higher dose of prednisone and now cannot even tolerate 2 mg.
- Again I call my RO nurse who refers me to my pulmonologist for the cough. And YES, they KNOW about the pneumonitis induced from radiation, they claim it can very well happen. I did not say, yes but, I was JUST there and he did nothing.
- I suffer another two weeks waiting out the allergy and getting back on Xeloda. See my DNP in meantime who saves my arse.
- I go for my PET CT scan. I am now in a wheelchair, barely able to breathe, cough is freaky, weekend has been a nightmare.... committed to going into the hospital after scan since it is so bad. Barely able to speak, rough voice, head splitting.
TODAY The onc #3 who is filling in NOW sees me because before I go into the scan I tell my nurse navigator I am doing very badly. The onc orders a second set of pics of brain and neck. He orders labs. He orders fluids. He sees me and says we are awaiting the results which he cannot get to until tomorrow according to the RO he spoke to but he did try to see and read to get an idea.
AND SO I SCRATCH MY HEAD
I am so confused.
How is it that I was allowed to go WEEKS with undiagnosed rad-induced pneumonitis ?????? when I had all the symptoms.
How is it that once the rads-induced pneumonitis was discovered on the high def CT that I was not treated for that????
True, the prednisone that was for the lupus could have helped and I was allergic to that, so no steroids.
But here I am barely walking, lost months of my fragile life playing medical tennis with these doctors who did not help me.
So today, the fill in oncologist did more for me than anyone.
He is addressing ascites tomorrow at appt. The scan 'should' tell but if not something will be done for the massive fluid-filled belly I am now hauling around. It is so huge that now the pain is in the bra line on each side and along my back, my upper legs are swollen. And when they gave me half a bag of IV fluid today I swear it had nowhere to go and went to my ankles which have not swollen in three years.
He wonders why the rheumatologist has not prescribed for me immuno-suppressing drugs to give relief from the lupus, I understand he will call the rheumy tomorrow, I hope so.
Without steroids the pneumonitis is a challenge but one he is willing to take on, not just refer me it seems.
What really confuses me is that until this evening how did I not see the obvious call.
The pulmonologist had to know about the pneumonitis, he had connections to the cardio and rheumy and could have called the RO and MO. But he did not even address the problem. Instead giving me an rx to suppress the cough reflex for a cough I have had for 18 mo or more.
Why didn't I see that?
Because I am the tennis ball and my head is beaten silly.
Hope you enjoyed the game.
0 -
Dianarose - that is too much. One hour at a time sometimes is all we can manage, or minute. I am saddened by the load you are bearing.
Micmel - Today I got a half bag of fluids in IV and I felt refreshed enough to avoid checking into the hospital to be stabilized. Bought Gatorade for first time in my life. And sometimes it's these little things that keep us one foot in front of the other. Until today, I have been crying two and three times a day, no tears and cannot cry like a normal person with this cough seizure crap, but really crying and even telling Hubby that if I had a quiet heart attack and just went right now I would be fine with that, I am sorry Hubby but that is how bad this is. And the good news was the stage IV cancer was not even killing me. So Micmel, I say this as real as I can, sometimes it is all one can do to know they ar not alone jut because another one is moving along and feeling just about the same way. But they can keep moving along together. A half of a bag of IV fluid was all it took to help me say that. Hugs for you. Hug your dog, I hug mine every morning. He is a drool artist and smells like a goat since I cannot brush him right at this point, but he is the one reason I am still going, unlike Hubby, he just wouldn't get it if I gave up, at least that is what I think.
Everyone - wishing you giggles sometimes in this day. Deep peace for a long moment, just once. And a smile for someone who needs it. I will try to do that too. I need a new kind of day. Going back to bed to get more peaceful sleep I hope.
0 -
Blue- your post made me exhausted just from reading all the stuff you have been through. Six months after radiation I woke up one morning and couldn't breathe. Therewas fluid trapped between my lung and the lining of my lung. All the doc gave me was an inhaler. Took a few months to get better . You have so many doctors involved. I couldn't keep track. Hope you get some relief soon . 💕💕
0 -
Diana, I have no words to express my thoughts and feelings re: your daily struggles with ill health and the medical community. Keep hugging that big beautiful dog. Is it a Newfoundland?
0 -
His name is Thunder. We did his DNA and he's 70% boxer and 30% pit bull. Big baby. He always knows when I feel bad and puts his head on my shoulder. Wish humans were more like d
0 -
Gorgeous!
0
