A place to talk death and dying issues
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Pajim, I'm in a similar headspace. Although on paper I look ok-ish - extensive mets to bone but small number in lungs and only 2 in liver - I'm in what Shetland called the Wild West of treatment. A small progression requires an exponential jump in tx. How is that fair? Doing Ixempra plus Xeloda 5 days after rads to my sternum has been no picnic, dealing with esophagitis from the rads and misery from Ixempra. Had to stop the Xeloda altogether. For the first time I'm wondering if it's worth continuing treatment. But I know I don't have to make that decision today, or next week, or even next month. So I do what I can to make today a little better, and maybe put some in the bank to make tomorrow a little better still.
Echoing Piggy and Lori's eloquent sentiments. You know how I feel about you. xoxo JL
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Thank you ladies. I do truly hope that I'll be laughing at myself in a couple of months. The skin mets are three lesions on my skull. I can have thm removed if need be. Don't know yet.
I need to remind myself one day at a time. Keep doing the dang exercises. Take the dang sleeping pills if it's necessary. I'm walking better today so at least I didn't set my rehab back a month. Its just hard when I wonder whether I actually WILL be able to walk properly again, much less play golf.
My DH is also unhappy. And my MO. It never occurred to me that my MO could be feeling guilty for not finding something that works right away, but everything we've tried up until now has worked. And his suggestions seem totally reasonable to me. I'll remind him that it's not his fault.
I did Adriamycin 12 years ago. I can do it again. And with luck it'll kill many cancer buggers. I wasn't planning to die this year. Truth be told I'd given myself about 3 more years. Well, cross my fingers.
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PAJIM- it sounds like you are having a better day today- and yes! the sleeping pills or whatever it takes to get a good nights sleep is key for me. I don't think any of us really knows- I am trying to decide when I get to stop eating broccoli- otherwise I keep focusing on looking for the good parts and savoring them- I hear stories all over the place about this weird lifestyle we seem to have been given.
I have very vivid memories of my first adriamycin. the nurses name was Cassandra- she had long long hair and it took an hour of little pushes of the red stuff and beautiful conversation with Cassandra. Good luck with this powerful treatment.
keep us posted. hugs!
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Pajim, I don't think I can add much of anything or say better than what these ladies have said. but I can say, even in my sour patch kid moments on this thread, there is one thing I have learned. That it's okay to accept the things we need if they help us get from point a to b. I need sleeping pills to sleep too. For a long time I felt guilty needing them but once I told myself it was okay, that it helps me get a good nights sleep, even if it's a few hours more than nothing, it helps me get through the next day. My anxiety cut in half just releasing myself from my concern about needing them. So whatever you need do it.
Concerning “the red devil". On my first day of chemo my nurse had trouble getting me to sit down long enough to get the chemo into me. Not because of anxiety but because I had read you should hydrate really well before hand.....well I drank over a liter of water before my infusion that morning and my nurse would keep asking my MIL where I was when she'd come back to my chair,to which my MIL would reply I was in the bathroom again. Once I was sitting down long enough to push the syringes through my nurse said “holy moly how much did you drink??". “I think I might of hydrated a bit too much" I said and my nurse cracked up. So I do suggest plenty of hydration just don't do what I did lol, or at least wait til the stuffs in ya
Sending you hugs pajim, i wish I could offer more wisdom and comfort. I understand the phrase "things starting to go wrong", I see and feel that trend in me and I don't like it one bit.
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Pajim - the other ladies are more eloquent here, but removing the fundamental ability to walk really alters the mental space from one where it is easy(ish) to manage ups and downs to one where you can be put off by the slightest frustration. I've had days where it seems like I will never walk normal again, or get to swim or whatever - I know that is wrong but right in that moment the hill seems massive to climb, especially when you CAN remember how it was to take a step without thinking or pain or without having to ask people to help you get something that you would have easily been able to do on your own. On bad days before bed I just repeat over and over that its ok, its just a bad day, not every day is like this, try again tomorrow, it'll be better tomorrow.
Do you do anything to track your progress so you can look back at how far you have come? I track time spent going for a 'walk' outside, so on bad days when I can only do 7 minutes I can see well yes, today is crappy and painful but two days ago it was 45 minutes and a stop at the store to pick up groceries, so there is no reason to not believe that won't happen again.
It is unfair though, having to allocate mental space to both physical rehab and cancer. Its a lot to ask for anyone.
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Nkb, thank you
I had a couple of truly miserable months when I first started Kadcyla, but my last two infusions went well and I am finally starting to feel like myself and be active again. I'll take it for as long as it lasts.
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Lori- I am so glad that you hung in there and got to the good days. Aren't they wonderful? I try to stop and remind myself on those good days how wonderful it is to feel good. The psychology of breast cancer is a beast.
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glad to hear that , LoriCa , I wondered how you were...
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Nkb absolutely! The good days are what makes it all worthwhile, although there are days when I wish the ups and downs of my rollercoaster ride weren't quite so steep all the time haha! And I have to laugh at what I consider a "good day" now compared to my previous life. I'm sure we all feel that way.
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I certainly do! Though the physical therapists say that there will be more good days over time.
Sondra, yours is an excellent suggestion. I don't see much progress from day to day but every do often I run into someone I haven't seen in two weeks and they point out how much progress I've made. Or the PT does tests and says "you do that 8 seconds faster from a lower surface". Then I feel better.
I forget, when I want to be "more better right now" that I have co-morbidities. Hello cancer! Why don't you just shrink for a while?
I'm not ready to laugh at myself quite yet (wait for the next CT scan) but I am feeling somewhat better. And I truly appreciate all the hugs. I can really use them.
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Well, the CT scan is worse. Sigh. Totally expected but still a blow.
My MO and I had the 'pre-talk'. The one where he asks if I've done all the administrative things (wills, trusts, etc.) I would need to do before I got really sick. And where I tell him that there will be no trips to the ICU, no throwing up 3x/day for a month, etc. We are on the same page.
Anyhow, I start Adriamycin today. Whether it kills cancer cells or not, alpelisib is next. Still not laughing at myself. If the red devil doesn't work this will likely be my year of death. But let's be optimistic! Why shouldn't this work? It worked back in the day. . .
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Pajim, someone gave me post-its that say "Optimism is a Strategy". I'm holding your thought as true, that Adria will work. You're in my prayers today. Hugs from JL
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Pajim, I am sorry that things are as they are right now. I will share your optimism about the red devil and hope you see outstanding results. None of us can see what is ahead for us, how soon, or how it will manifest itself. The red devil is on my MO’s list for me, too, but we shall see what happens. I will keep you in my thoughts and look forward to updates from you. I don’t think that I will show the same strength that you have when I get that pre-talk. I will probably turn into a blubbering mess. hugs and prayers from, Lynne
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Pajim, I hope that Adria works for you. You've always been so supportive of others here. ((Hugs))
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Pajim, Adria (plus cytoxan) saved my life. It was harsh, but just try to get thru it. Your bone marrow will be pissed, but you have to kill those bad guys systemically.
I lived on fruit grain bars and chocolate ensure. I watched movies and slept. But it worked..took 3 months, but it worked.
S
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Pam, I'll be crossing all my fingers that Adriamycin works wonders for you and you move back to steady ground. Hugs
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Pajim- thinking of you and hoping this red deviltreatment works well.
I like optimism - feels better
Hugs to you.
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Pam,
I'm sorry to learn about this setback. Go ahead and put that red devil on your side and at your service.
Yes, I vote for optimism!
Your friend, Tina
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Pam, I had red devil on the 1st go round. Tired and hair loss, but fairly functional. Cute wig and audio books helped. I had no resulting heart problems. Good luck.
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pajim, I’ve been thinking of you since your last post letting us know your scans show progression, you are doing the red devil chemo and you and your doctor had the pre-talk. I’m sorry to hear the news. You’re in my thoughts. Wishing you the best and hoping chemo helps. Many hugs to you.
- Camille
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Yes, Pajim, Take a Deep Dive and surface renewed, ready for a long break and better treatments!!
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Oh no, I just read your post, Pam. Another blow. I hope Adriamycin will give you dramatic improvement and so much more time. Please, please, please.
Mods, you picked a really bad time (and thread) to insert that ad for the gift card. Tacky.
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Shetland,
Thanks for calling out the mods on that thoughtless, tone-deaf move.
Tina
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Agreed, Shetland and Tina.
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Hugs Pajim, I really hope you have good results with Adriamycin .
Thanks for calling out the Mods on that post Shetland. That was incredibly poor timing on their part.
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Thanks for all the hugs everyone. The first week is going pretty well. They're giving me 1/3 of the dose Stage 3 ladies get but the full dose of antinauseas and steroids. Had the steroid crash today, ai yi.
I'm guessing it'll take 3 weeks or so before we know whether it will work. My TMs are very accurate on that account. Meantime I'm going to live my life like I always do. Rehab exercises and work.
It has really been scary and I'm so not used to scary. The failure of CMF -- it's the first time in 12 years a treatment simply didn't work. That's a blow to me, my DH and my MO. We're all reminding each other that it's not our fault.
I'm hanging in there.
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Thank you, everyone, for calling us out on the post. It was insensitive and poorly timed, and we should have been more considerate about where we shared the opportunity for our members. We've removed the post, and offer our sincerest apologies.
The Mods
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pajim, thinking of you as you wrestle the devil, hope its a complete bastard to those cancer cells, but gentle to you SE wise. Contemplating thoughts you are, I might be progressing already at under 4 months on Ibrance combo....in the midst of scans ( 1 down, 1 to go ), will know for sure on the 20th.
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This is kinda a rant and a vent and a blurb. Not meant to come across as a personal blog, more of an airing that only you ladies would understand. The pain management doctor I thought was just that ended up being a palliative oncology/hemotology doc. referral so I was really happy about that, I didn't realize that's who I was being set up with until the appt. Aside from helping with MM certification I now have a palliative resource onboard, she even gave me a direct line to her extension etc. So I now will see her every 2 or 3 months to help with symptom management etc. It was in the back of my mind to ask when she inquired if I had documents in place should i end up in the hospital etc, a proxy, living will, DNR etc. I said I wanted to have these in place but have been putting it off. She came back with all the paperwork along with all the paperwork for my MM certification. When I came home, I made myself a cup of coffee and sat and fill out the proxy, the living will, the DNR.....i sighed afterwards. Wow did that ever put things in perspective.
My tumor markers are on the rise, scans didn't show anything new MO says, I did read my reports, so it may be too small to see now and we continue to watch if they go up again...then I had a mini meltdown thinking about that pituitary scare because of elevated hormone coming from there I had around the time of mets discovery. Brain MRI was clear. What if TM are up because something is going on there now?! If so, Id think Id have physical symptoms I told myself...then I thought about that .55x.65cm new ground glass nodule found in right lung at last scan, while the explanation from my MO a deep enough breathe in wasn't achieved enough (I was scared during scan) that might of caused it to show up... I still wonder. I still hurt alot too, hopefully with a huff and a puff I'll feel better, but I honestly feel like someones beaten me with a baseball bat all over and I have a high pain thresh hold ie: took nothing for pain for mastectomy or oophorectomy.
I'm so so sick of doctors, I'm so so sick of the financial toll all of this is. Its so odd to feel one minute accepting of treatment etc and then the next minute ready to punch a wall and say, "I'm done!! Screw you, you asshole cancer!!"...Ugh. I've decided, if Ibrance isn't the drug for me, whenever that is, I'm done. My stuff was sent out for foundation one (bone biopsy sample first, if not enough original tumor), curious to know what it comes back with. I want to have clear and best information before I very firrmly put my foot down. If my bone biopsy wasn't HR+ I was going to be sent on a trial because MO didn't feel more chemo would be helpful considering my cancer grew alot on AC chemo. Is that awful to say, to say I'm stopping at Ibrance? Is that cowardly to say?? Considering the things Lori and Pajim have dealt with/are dealing with on this thread and what others are dealing with on other threads I feel like such a wuss. I struggle with being honest but also not discouraging to the newly diagnosed or those that are out there and scared. I know how I feel and I wouldn't want to scare anyone. I'm tired. Tired of drugs, tired of pain, tired of being a heroic cancer patient chasing treatments to stop a crude reality. What is graceful or dignified about cancer and how am I supposed to act either or concerning it. I try to be both. I laugh, I smile, I cry, I'm a goof, I'm a fabulous muffincutter. I sometimes do manage to have decent days and decent QOL, but its that crash on the hard days that make those sparks of joy difficult to keep in my forefront. This disease really is hard to deal with. I feel melodramatic for my ramblings and cowardly sometimes in my shrinking from putting my head down and forging through like a complient little cancer patient. I just don't understand why life itself has to be hard on top of having MBC. My husband looked at me almost with panic when I received the call about my TM being up quite a bit and things being bumped (scans, MO appt etc) up in what seemed like a rush. He asked me if I would take AC again. I told him that I couldn't, it failed, I doubt insurance would even let me do it again, plus I got a lifetime dose of that crap. He said "Does it matter at this point?", I said yeah it does, AC was hard and I don't want to go through heart failure on top of everything else. I still loved him in that moment, he doesn't want to let me go. But he also scared me in that moment too, so perhaps as hard as it was to sign those papers, maybe its not a bad thing I'm taking care of these things now.
I feel sometimes I cannot produce the gusto of a warrior, nor the bravery to surrender indefinitely to treatment. When does it simply boil down to biology, and not necessarily the will to soldier on? Are their limits and can we guard them? Grandiose to say, maybe even insensitive to say, tho not intending to be, but maybe it's not when you know what stopping treatment means and you signed the papers I did today. Ugh, what a sour patch kid I am. End Rant.
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