A place to talk death and dying issues
Comments
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Calico Cat thanks for the article I should have printed it out before meeting with Oncologist yesterday but I asked do I have another year, and she said yes. That was a relief because my PET Scan showed major uptake in all tumors, growth in the all tumors much more so in the liver and kidneys and more lymph glands involved in stomach and aurota. New lesions on right clavical, new lesions further down on the right femur. I have to many to count tumors in my lungs and the pleura, the one that bothers me is the one that has gone down towards the heart, and have had major fluid increase in left lung. My forth and fifth rib have lesions, also in my T3-T11 and L1 and L2, Right hip and medulla canal in femur plus soft tissue surrounding such. Plus what they say is multiple small tumors that look like buckshot throughout my stomach. So I thought we would go to a new drug. Instead they are doubling my dose of Abraxane. While she sees if insurance will pay for a new drug on the market, she told me what it was but I stupidly didn't write it down. I'm not able to be in any studies or trials because almost all of them will not take a patient that has had over two different types of chemo. This is my sixth year on some kind of chemotherapy, it has been continuous with a week or two stoppage while changing. I can't have any radiation because I have Ehlers Danlos Syndrome. I told her that I was told that they will keep trying no matter what, and she said no, I still have a couple more options left until there are no other choices. It's up to me if I want to continue.
I've decided to print out the article that Calico Cat has shared with us and talk with my Palliative Care Doctor, he's on a different page than my Oncologist. Need to see what he says. My PCP feels that my Oncologist blames all my infections and complications always on something else and not the cancer. Even the heart specialist said when I needed to go onto oxygen that she felt it had to be my heart, not cancer causing me to drop with oxygen in the blood (I go down to 70-72 without such), I spent three days in the hospital and all these tests for the heart doctor to prove to her that it was my cancer and lung involvement that causes such, to me she stated I don't know if I agree with him. I have to laugh because my constant bladder infections she refuses to believe that it's the Abraxane when it states that this is one of the major side effects of such. I never had a bladder infection until taking this medication. She says it has to be some other reason. I'm told by other cancer patients that they have the same problem of Oncologist never wanting to admit that it's the cancer drugs causing side effects or infections.
So it's like I say "hi ho, hi ho, it's off to chemo I go" for the next year. Last year I had five hospitalizations and pulmonary embolisms. What will this year hold?!
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Dear M360, thank you so much for sharing your PET results and continuing journey on a path so many of us walk. You've given me a lot of insight into what struggles I may have along the way. I only hope that I can do it with as much courage as I see in your post.
I've definitely seen my oncologist in denial about what effect the cancer/chemo has on my lung capacity. I've been complaining to him for months about shortness of breath which started when I went back on chemo a year and a half ago, after having "failed" all the anit-hormonals. He assured me the cancer in my lungs is not pervasive enough to be causing the problem, nor could it be the chemo. Whether he's right or wrong (and I think he's wrong), I feel there's little to gain by arguing the point anymore.
I'm sending you big hugs through the ethers and prayers going out for all of us.
xoxoxooxoxoxo
Calico
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Interesting that we all "know" the side effects and what is happening in our bodies, but have it dismissed or denied by the very people who dole out the drugs that cause it. Then you play volley ball - PCP I know nothing about chemo damaged.. nerves, feet, lungs, bladders, edema etc.. which bounces it back to MO who tells you nope it's not the cancer drugs sorry... back to the PCP's problem. Who gets stuck in middle? The patient gets stuck in the middle. After 8 years of this, it gets very old. Then after a while you never believe any of them.. bla bla blahhhh....
Raro got her wings yesterday. Deliriumpie got her wings tonight; she was 33 years old. They are FREE at last. There is a part of me that is jealous of their release from Cancerland.
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Hi Calico Cat, I sing that same song, with the same results. I told my MO for weeks on end that I had shortness of breath. And she of course denied that it was related to chemo. Well it is related to Adriamycin. That chemo caused heart damage to my EF function. It is a permanent forever side effect. I take meds twice a day, have 2 Cardiologist, have blood pressure issues because of it, and have a new ECHO every 3 months. My Cardiologist actually went up to her office to let her know that I had a lifetime dose, and to never use it again. And I cannot have Taxol again either. I have neuropathy that drives me crazy, and the Taxol regrew my tumor. So no more Taxol. I have limited choices to begin with, so this is not helping me. Like I don't have enough problems being triple negative!
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I hardly know what to say. Didn't realize TIL reading this thread that Raro and Deleriumpie had gotten their wings. I do like the way you referred to them being Free at last. I just hate that we work so hard to beat this thing, giving up so much "quality" of life with such hope, such hope.
M360, I cannot even believe what you are going through. I do hope your ONC gets approval from the insurance company for the new drug and that it will be your magic bullet. In the meantime, hope your counts can handle the increased dosage of abraxane. My counts are getting hit pretty hard and I am so darned tired all the time. It is promising that your onc didn't even hesitate when she said yes to your question about time! I just hope you are able to control pain. My fentanyl patch works quite well for me. I like not having to take pills!
I had decadron before my abraxane so looks like I'm up for the night. Time to download another book! Want to escape my Cancer world and take a ride through some wonderful fictional life for a few hours! Hugs to all
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Here's a thoughtful piece by the remarkable Oliver Sacks in today's New York Times:
http://www.nytimes.com/2015/02/19/opinion/oliver-sacks-on-learning-he-has-terminal-cancer.html
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Hi, Beachbum, and (expletive deleted) so sorry the "red devil" has affected your heart, and as you say, a well-known possible side effect of the drug. Shame on your onc for not listening to you! Abraxane (Taxol with a fat molecule attached) has given me neuropathy as well. Never understood why people with neuropathy would have trouble buttoning things, but I do now.
Tina2, thank you so much for the link to Oliver Sacks' article. I've always loved him. I read "The Man Who Mistook His Wife for a Hat" years ago when it first came out. He will be sorely missed.
xoxoxoxoxoxo
Calico
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Calico Cat, Beachbum and other women who feel they have lost some lung function or short of breath. My oncologist didn't believe it was caused by cancer. I saw a man at the infusion center using a oximeter and asked what he was doing he said proving to his Oncologist that he needed oxygen. So I went to Wal Mart and for $20 (they have them all over the internet to buy) I got a Oximeter and every time I thought I was out of breath I checked it and wah lah at times I go down to 70/72 sometimes in the low 80's I kept a record for two weeks while sitting, laying in bed, or walking. She couldn't believe it and I said let's go for a little walk as I began to talk and walk my oxygen went down to 70 she said you should be passing out. I was hospitalized and they monitored me for three day, now only do I have a big machine that I hook up to at home, I have a small machine (AirSep) that I carry around (I hate those tanks too hard to handle, lift, and go from car to street walking.) and can even charge in the car. But what I went through to prove I was right. I can't tell you how much better I feel along with so much more energy by going on oxygen. I would tell you buy such and fight for them to give you such. We all live with such pain and limits with life, giving us oxygen should be a given if we feel we need it.
Rosevalley I too love the thought that these women are free. Reading such I could feel and imagine how wonderful that will be when my time comes.
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Good morning M360, You are so very right about the side effects and how the MO will deny that anything could be caused by chemo! I have two Cardiologist that have both spoken with my MO and my BS about my chemo induced heart damage, Thank You Adriamycin! I was supposed to have immediate reconstruction after my mastectomy but my blood pressure was 70/34 so no go. I stayed in the hospital for 4 days after the out patient surgery because of my blood pressure. I felt fine, but they could not get it to come up. So I have a new ECHO every 3 months and eat heart meds twice a day every day. And now doing rads I am exhausted. I cannot shake this fatigue, maybe because I can't breath??
This disease is exhausting, trying to live right, and more important trying to die well. Making sure I have all of my ducks in a row, so I leave nothing on the table at that time. I feel like I am losing it piece by piece, and my old normal was forever ago. I read all the posts, and I think I should just get up and go and not look back until I have to. Take back my old normal, and forge ahead until I can't anymore. But I would be late to rads if I did that today........Grrr........yikes!
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Reading your posts about doctors make me thankful for the doctors I have. When I started Taxol they monitored my blood pressure. With the Taxol they also give me benadryl and decodon (a steroid) During my 4th infusion My BP went up to 222/111 darn high. Had to go to my PCP and have my BP meds adjusted BP is now managed correctly, but darn it I miss the energy that the steroid gave me. Got to learn not to get annoyed so easily. Was at the supermarket today and got on line behind an older male. Clerk tells him that if he buys 6 of an item that he had five of that the price is lower. So he says ok ring another one up, then the old guy asks if someone would go get it for him.grr, then as the clerk is ringing up my order he starts to ask her where is the discount on the receipt I couldn't resist telling him that he should learn how to read receipt and learn how to do things himself instead of expecting women to do stuff for him.
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Just finished reading Atul Gawande's excellent "Being Mortal." Everyone should read it, and everyone here in particular.
Tina
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Thanks, Tina, just bought the audiobook at Audible.
xoxoxooxx
Calico
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I just placed a hold on it at the library based on your recommendation. It has a five star rating on Amazon based on over 1,400 reviews, which is pretty remarkable.
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Good evening Ladies, I have been trying to get life together, now and later and I find I drag my heels on both. I am finishing rads but what's next? I need to get my affairs in order, but I dwell on everything all day every day. I guess I feel like I am still in the middle of my life but trying to organize the end I guess. I am single without children, so I guess I don't care so much about later. But then I panic and feel like there should be a wrap up at some point. Like something epic, but then I think I want to go peacefully, and quiet. But I did decide to donate my body to research. Since I have triple negative BC, I am so hoping that it just may be the answer to solve the problem of finding a cure. If it helps to understand how to stop this crazy disease then it will all be worth it. I'm sure that I won't be the cure, but maybe a part of the cure. And that will be good enough for me.
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Hi, Beachbum, you've done a wonderful deed by donating your body for research. Much good will come from that.
As far as having the correct paperwork in order, I'd suggest just taking it in small bites. For example, just focus on having an Advance Health Care Directive, which includes a Power of Attorney for Health Care, and Instructions for Health Care. If you do that first, I think it will make other things not seem so overwhelming.
I just received a book from Nolo.com called "Living Wills & Powers of Attorney for California." I expect Nolo has these books for other states as well. If you look at their web site and don't find what you need, or have questions, call them at 1-800-728-3555.
xoxoxoxox
Calico
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I agree with Calico: Undertaking end of life matters a step at a time is more manageable for most people. Here is a link to NOLO's guide on "Types of Health Care Directives": http://www.nolo.com/legal-encyclopedia/living-will-power-attorney-advance-directive-30023.html This is the link to the more general page of Living Wills and Medical Powers of Attorney: http://www.nolo.com/legal-encyclopedia/living-wills, which directs you to a number of interesting topics and how-to's. I used NOLO's guide to Social Security Disability, which I borrowed through my local library, when I applied for disability in 2011, and it was very helpful.
Tina2, I also read Oliver Sacks' essay in the NY Times and found it to be a perspective that was both thoughtful and meaningful--two adjectives I can always apply to Dr. Sacks' work. I am a long-time reader and fan of his! I hope others check out his short essay and find it thought-provoking as well.
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I've often thought of the many pitfalls one could encounter in the American health care system if one did not have good command of the English language. I know I've had my share of miscommunications/misunderstandings and English is my first language.
From the NY Times:
xoxoxoxoxoxxox
Calico
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were you at my house today???? I had this very same fight with hubby today....and I am almost 2 1/2 years out from diagnosis. He thinks I have no hope. That I'm the eternal pessimist because I say I am going to die from bc. He doesn't think that at all. He thinks I will be cured! I'm sorry this is happening. I do realize that I don't know how I would be if the roles were reversed. It's complicated and it sucks. Keep talking though. Sending hugs.
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MammaRay, I am very realistic about my Stage IV. However my friends and family are not. I like to have everything neat and organized, planned so to speak. This is all so unplanned, wait and see, but it can also get ugly quick. Since I am alone and 58, I feel that I just can't wait and see, or ignore it. It's not going to just go away. So I think I have to have it all set for the end. I am making arrangements to donate my body to the Cleveland Clinic. Many people think that this is a great way to have something good happen to hopefully find an answer to the cancer. And I know that I will be helping to educate our future Doctors. And the medical school will pay for it. So a bonus for me. And my final resting place will be exactly what I want. So I am confident that I can check that off my list.
I have told my remaining family what I wanted and they seemed surprised that I was making the arrangements. Well I have Stage IV, so not real certain how long to wait. But I have told them what I am looking at, and now they seem surprised that radiation sounds bad. What part of cancer is good? It's almost like they just thought I was was going to call them one day and tell them I was cured. But I have to feel secure that I have taken care of the end, so I can live the middle. I know the beginning, and I know the end, I just want to go about living. For me, that is the hard part.
You have every right to be furious, I get it. But I am sure that your husband is struggling with it. His emotions may be all over the place. You are both young, and I am sure that he probably fights the reality of it all. You both have to wonder why us, how long, and where will he go after the end comes. It is a scary thing to deal with at any age. But when you are just starting to settle into life and get dealt these cards, it is a life altering event.
Perhaps you could talk to your Social Worker and they could suggest a counselor to help you both navigate this. There is still so much living and loving to do, it seems a waste to lose that time. He must love you very much.
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I realized after a conversation with my husband this week (btw, he is an alcoholic and probably under the influence when he said this) and he told me my addiction was self pity, that I can no longer confide in him my fears, pain, frustration, despair, over having stage IV. Thank god for BCO and girlfriends! Men are all different but many of them are just unable to cope with a problem they are unable to solve. I think it's the nature of the beast.
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MammaRay, vent all you want.
It is hard for men to not have control. My husband has had to come to terms with the fact that he can't fix what I am dealing with. It has taken him a long time to do that. He wants to be my protector, but cannot protect against bc. He feels that something is taking me away from him. He is angry yet powerless. Men don't want to feel powerless. Hey, none of us do.
Please give your husband some time to come to terms with what you are dealing with. As you say, it is all very, very new to both of you. It is so understandable that you are freaking out. But try to cut your husband some slack. I really don't think he needs to be on the same page as you just now, if you don't mind my saying. The two of you just need to be good to each other. I've been married over 25 years. Marriage is work and we've had our ups and downs. These days, my husband and I try to make life easier on each other. He's not the type to have long, serious discussions all the time about anything let alone bc. So I sandwich things I want him to know in the middle of conversations. The timing has to be right. I have to keep it kind of casual with him. Sometimes driving in the car together is a good time to talk. It's kind of an art form, lol.
If you can't get your husband to discuss matters close to your heart, try a different angle. Let him spoil you. Ask him to do things like warm up the car before you go out, make you a hot cup of tea or pick up a few items at the store. Ask him to do things you know come naturally to him. He'll know he can still take care of you in some ways, even if he can't "fix" bc. Best wishes to you and your husband as you navigate through this together.
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Ladies,
I thought I was so ready for the end when the time comes. I am not! So I've called my Case Worker, set up more therapy times for my daughters and myself and when those quiet moments come I find myself wondering how will my last hour, minutes of life be?!
I say all this for I had another infection just flare up and swelling in my arm, which I knew the drill, call the doctor, head to emergency room and then they admit me for three to four days with IV antibiotics flowing at all times. So everything went as it usually does but this time as they bring me up from emergency to a room as I stand to be moved from bed to bed, I almost pass out. All of a sudden my face turns red and I can't breathe, I immediately ask my daughter to get out a epi-pen, benadryl, inhaler, and nitro. No says the nurse you can't use your own medicine in the hospital. We have to put it into the computers have a doctor okay this and then pharmacy has to send it up. I looked him in the eyes and said I'm not going to die from stupidity! As my eyes are swelling shut, and it's harder and harder for me to swallow, I'm now rolled in a ball on a bed crying thinking I'm going to die from procedures. I ask my daughter to hug me and I say quietly I need a nitro, in which she hands me a bottle from my purse. I take one and it lightens up the chest pain which was like explosions happening, then another nurse comes in with nitro and it took two more before chest pains were under control. It took 15 more minutes for an inhaler and benadryl and prednisone to come, I also asked for a Ativan. In all it took over two hours to control a medicine reaction. Since my pharmacist printed me out all the symptoms of Red Man Syndrome caused by Vancomycin.
I did have a side effect, but also an allergic reaction (I have had 13 from medications so I know the drill without getting upset) but from what they don't know, the hives stayed for days along with the itching. I had Vanco for another three more days and nothing. But my daughter and I both said my heart could have just stopped for it couldn't take it. I know it was wrong for me to take my own medication in a hospital but it was my life I felt on the line.
It was also insight into how much I don't want someone else in control of my life at the end. Here I was thinking all things in place and I was having a reaction that I knew could be controlled but it was that window of time from coming up from the emergency room to a room in the hospital, they had not checked me into the room, let alone gone over my meds, etc., Thank goodness my daughter was there and kept a level head and said this has happened before, first nitro, get the heart from reacting, (this also opens up all areas even the lungs so blood flows, I don't have heart problems but have explosions like a heart attack from swelling in my left lung and a tumor that is going down from lungs into the heart also tumors in the pleura have caused my heart to react, so I carry nitro and usually two will stop me from doubling over.), then inhaler to open up the lungs (I'm on oxygen so I knew I was getting oxygen to the brain), epi-pen or prednisone and bendryl, if all this doesn't stop or slow down reaction then call ambulance.
When things got quiet another doctor said that I needed to talk to the hospital because this is how people die, they can't get the medication to them fast enough, I had what was needed but they would not let me use such. They didn't know I had taken one nitro myself because I wasn't going to sit there and die from stupidity. I know I'm dying but this was a preventable situation or one that could easily been reversed.
This situation made me realize I'm at peace with where my life stands and know that I have a short time left to live, but that day wasn't the day and no way was I dying in a hospital. My daughter really felt and also realized how at anytime it could be the end and as cool and calm as she was dealing with the doctors and my frustrating crying that I don't need to be going through this for this long. She is not ready for me to go right now. Will either of us really be ever ready for the end? I was with my mother, I held her hand in her living room as she passed, sitting on her favorite chair, she closed her eyes and she was gone. I so want to go that way but there are not guarantees.
I just know I don't want to die from stupidity!
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My God, M360, what a nightmare!
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M360, wow. Your post blew me away. Thank god you and your daughter both knew what you HAD to do!!
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M360, that was horrifying and shocking. Ditto what Gatorgal said. Hugs xx
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M360 - Wrong?? Not wrong, life saving, your life was saved because you knew what you had to have NOW! Good thinking, and if I were you I would carry those drugs with you from now on. Excellent post.
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Hi, ladies, just venting, too. I updated my POA for Health Care (Advance Health Care Directive) today, and needed a bumch of copies, so went to the copy shop rather then make them at home, thinking it would be faster to do the shop. Nooooooo . . . . . . The copies are in such a jumble I have to unscramble them tomorrow. Not even sure which are the originals. This is very difficult to do given that my hands are a mess from the Doxil I had a month ago (2nd monthly treatment), and no improvement in sight. I really can't do any more of it. Just have to see what the onc has up his sleeve. He's been way too optimistic about how I'll handle these chemos.
The onc gave me a 3 week break 'til after Christmas and I already need another one. My tumor markers have skyrocketed. This really sucks.
Sorry to be Debbie Downer.
xoxoxooxox!!!
Calico
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Calico that sucks. I noticed you are ER/PR+ Her2neg. Would they allow an Ibrance trial? I saw the treatment list you've endured.. geez I never would have gotten that far. I noticed on some other threads they are somehow getting Ibrance around the "first line" rules. I don't know if you have just had enough so I thought I would throw it out. I hear there are little side effects but you never know. Sorry about the markers and all. Life in Cancerland sucks.. (((((hugs)))))
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Thanks, MammaRay and Rosevalley, for your thoughts and support.
You know, I guess I need to change my status to ER/PR negative. The lung biopsy I had a few months ago found that kind of cancer, so I guess mine has mutated from positive to negative? I heard somewhere that it can change. Or can you have two kinds at the same time?
I confess I haven't heard about Ibrance, and if my ER/PR status has changed, it may not be relevant any longer, but thank you for the idea, Rosevalley.
I'm so grateful for you all.
xoxoxoxoox
Calico
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Calico - hate that you're feeling so bad - I have always found that the oncs not only are too optimistic about the drugs they also don't believe in se's - I've heard time and again that "none of my other patients are reporting that as an se" - thank god I have a PCP that believes in the se's and tries to help me through them - yes, you can have two different cancers at the same time and yes, it can change from a plus to a minus - you probably need to find out what's what - btw Ibrance is also known as palbociclib - get your onc to check it out. Sending hugs, S.
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