Maybe a dumb flat question?
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Even the second time around I cry off and on - anything can set me off. It is just random with me. I also get angry off and on. I am getting better at controlling my emotions but it is normal and healthy to just let them out sometimes!
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Golly! DeliriumPie, you never cease to amaze me with how you just keep going. You are like the Energiser Bunny!
I don't know why you are dissolving into tears at the Rads office, but I don't blame you! It is a huge amount of stuff to process for you.
Our Zills blows me away too, with all that she has to cope with, and she gets through it too.
The "New Normal" for you girls is still evolving and ongoing. It's easy for me to adapt because I only had the short term fear and surgery to deal with, but I thank you for the kind words. I guess I am peaceful these days, but you wouldn't have described me that way before. LOL
I am glad you have taken the "back to bed" option today. Rest is a great healer.
So sorry you have to have a wrangle with the home shopping people, that's something I do a lot!
Take care...M x
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Hjps, it's an emotional "Roller Coaster"! Going there twice is just so not fair!
It is understandable that you are going through the range of emotions and feeling anger is to be expected.
All the very best...M x
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Delirium PIe==Rads is the emotional part of treatment for a lot of people because you have to face cancer daily and lots of other cancer patients at the same time. I think it's great that you're letting the tears flow now before the actual appointments. I know I had one day that I laid down on that table and the tears just started flowing. I knew I couldn't move or sob or I'd screw everything up. I was too embarrassed to say that I needed to stop the process. I just let those tears flow down either side of my face. It didn't help that the treatment room was lined with the "cages" they use for head radiation, the butt holders (don't know what else to call them) that they use for prostate radiation and the denture containers for those having mouth radiation! Plus they played the same taped music over and over...if you were lucky to get a therapist who played music. For some reason, they thought Lucy in the Sky with Diamonds would be good music for radiation.
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I think rads office is so hard for me because I was hoping I wouldn't need it for one. My MO and BSs approach seems to be only telling me one step at a time. I understand that approach but am not really a fan. I was shocked to see the RO appt pop up on my schedule for the day after my first chemo. I thought that decision was way down the road. I almost didn't go but thought I wouldn't begrudge him his office visit fee. Then he proceeded to tell me that the time for the decision was that day, that itvwa so serious that I had no time to have TEs places and filled, that I could have heart and lung damage, blahblahblah. He really has been the most straightforward and upfront about how aggressive my cancer is. So on top of all that great news he delivered, he crushed the only definite decision I had made about this whole process, that I wanted implants and I wanted them immediately. I had decided to do whatever they told me I should do but knew for sure that I certainly did not want any flap recon. I know what went wrong with me encounter with the nurse at my 2nd appt there which was 4 months later. She was super sweet and caring and concerned about me. That is always a bad trigger for me. I'm sure you all know that concerned look and tone I am speaking of. It sends me over the edge. But I've always been the person who is "fine" until someone genuinely asks if I'm ok. Then I'm a mess even though I was holding it all in before that simple question. Oh, that and did I mention I really really really don't want to do rads? Lol.
Mary, i am sorry you had that wxperience but i have to say that I find your description both scary and comical at the same time. Can't wait to see. I agree about things seeming more real there. I go to a center where all of the offices are I the same building. I was very aware from day one that the sickest appearing and most frail patients were sitting in that waiting room, and none of them looked happy at all. The chemo floor is pretty cheerful.
I'm paying for the nap I took. Now I can't sleep! Warm wishes ladies.0 -
No warm wishes for me! Hot flashes! I hadn't heard anything about rads so all this is interesting. I wondered how it worked.
I don't know how or when you would squeeze in anything else but have you thought about a therapist? I love mine. She's attached to the breast cancer center. I see her or call her when its convenient for me.
Take care of yourself and Reggie.0 -
I am one for researching everything and asked my Oncologist today how many patients just do what he recommends and don't question it. He indicated about 96% of people don't question recommendations! This is why I do what is best for me after thorough reseaching. Dr. are just human and they throw tons of stuff at you because that is what is always done and their job is to keep you alive. It doesn't mean it is always necessary treatment. I went against the grain with my first cancer and that was 100% cured. I just have bad genes and hense why I have to get rid of my breasts. I did do 6 weeks of radiation and it wasn't bad at all IMO but I still had a breast so the tissue may have helped.
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Cool wishes for you tonight Zils. For you and Reggie both. He's laying here panting. I call him a solar panel. I nearly relocated to the guest room when I was having the hot flashes. Sleeping in between bf who is a furnace when he sleeps and Reggie the solar panel was miserable. The one with two legs learned to give me some space when I was sleeping on top of all the covers which was most nights!
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Treatment delayed again. Boo.
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Why? Incisions? Are you not feeling well?
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Well I stopped by the BS first and she said it was fine to start but the MO saw it and said no. She said need to delay another week or two. Trying again next week, but I honestly don't foresee it being closed up in a week. MO said I should delay rads too. Have not asked him yet. Need to call I guess. They ran blood cultures to see if I have an infection in my port. That is the side that is so swollen. I finished my antibiotics yesterday. As strong as they were I can't imagine still having an infection. They are also considering lowering my Coumadin dose because they didn't like something on my EKG. Waiting on test results for that. I have not been feeling well at all but was thinking it was the antibiotics. I have been exhausted, nauseated, and running low fever on and off. Besides just being ready to start so I can get it over with, I am starting to get scared about delaying so long. The RO was so adamant about starting at 4 weeks after surgery because I "couldn't afford to wait longer". It's now going on 7 weeks, and that is if I don't delay next week. I'm also getting panicky about the clock running on my insurance. I had to take the breast cancer Medicaid because I didn't have insurance (long story) and it is only good for two years. If I do chemo for 6 months and have to wait another 6-8 months after that to reconstruct, I am going to be out of time and coverage. Not happy today.
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Oh, Sheila! So sorry to hear this. I really like you... you look at things the same way I do...and I hate to hear about you going through not feeling well and having to delay the start of rads. I had a one-week delay on my final chemo due to illness, probably neutropenia, and while minor in comparison, I know how it feels. You just want it to be OVER. And you just want all of them to stop telling you what you should do. Two years later and they are STILL telling me to get a flap surgery!
Tomorrow will be a better day!0 -
I'm so sorry. You need to be as healthy as possible for both chemo and rads. I hear rads can be hard on your skin. I hope you don't have to take any more antibiotics.
I didn't realize BC Medicaid was for two years. Alot can happen in that time. Try not to worry. Easy to say and hard to do. Just concentrate on getting better so you can conquer these next steps.0 -
Where are you Shelia? I'm a little worried. Hope you are feeling better.
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Hi Zils! Don't worry, I'm alright. I had just started a post yesterday afternoon that stayed with, it's a beautiful day in Texas! Then my drama queen at work started in via text and it zapped all the energy right out of me. It's was a beautiful weekend outside though. This is my favorite time of year. Of course we only get about two weeks of fall here. If you blink you miss it. Yes, 85 degrees counts as fall in Texas, but the sky looks different and the air feels different. It brings so many nice memories. I was also pretty excited that my incision improved so much almost overnight. It's still not closed all the way, but has improved remarkably in the last few days. I was really down last week but the weekend helped bring me back. They made me do all sorts of blood tests last weds, then I had to go back Friday because they did not get a good specimen for one test. The NP called me this morning on my way to work and said "you have to stop talking your Coumadin!!" Of course, I had just taken it. She said my levels are dangerously high. I hope I don't have internal bleeding, which I guess could account for all of my stomach upset lately and lack of appetite. I don't even know what to look for really. They will do another test on Wednesday when I go for treatment (hopefully for treatment). I'm up late tonight working on payroll for my favorite headache client. You wouldn't imagine the labor nightmare it is to bring us all those great "door buster" sales and coupons in the mail.
How are you? Did you finish up chemo? What's next on your horizon?
Mary- thank you for being ever kind. I hope you are doing well.
Goodnight ladies. I'll be sure to update on Wednesday if I don't melt into a pool of blood by then, lol.0 -
Delayed again. At this rate it will be Christmas before I get to start. Still off Coumadin and now I have to do a port study. Spinning my wheels.
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Not spinning your wheels. Getting healthy. Building up strength so you can continue your wicked pace AND do chemo AND rads. That's a double helping on your plate.
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Ive been sick since last week. Nasty sinus stuff that moves into my chest. Had my port study today. Diagnosis: it works. Lol. So while I know that is good news, I still have no explanation for why it does the things it does. Blood levels checked today too. Coumadin level was a 1 which is low. Should be between 2 and 3. The NP seemed puzzled and I said well I have not taken it in a week. She said, why not?! Ummm because you told me not to. So now I go back on my normal dose tonight, with no explanation as to why it shot up to an 8 to begin with. I asked her why it did that and she said because you are you. Ha. Perfect! Yesterday I noticed that this long piece of textured suture popped out of the slow healing hole in my incision. It is the one that I thought was funny looking from day one. It had disappeared under the gunk about two weeks ago. One side of it came loose and the other side is still connected deep inside, right into the ugliest part if the wound. The home nurse noticed it today and thinks that could be the culprit to the never healing hole in my chest. I have to call surgeon to ask about it tomorrow. I really think this whole ordeal is due to her doing a poor job of stitching up that area. It was never closed at all. I could always see that stitch stretched straight across the open (and large) hole. Wishing I had gone with my gut after all the problems I had with my port. I did think and even mention to someone that if she jacked me up this bad on such a minor procedure, should I really trust her with my chest? Oh well, onward and upward only.
Tomorrow I am doing something just for fun. I NEVER do that. Dr Zils should be proud! It is state fair time here and the cooking contests are a huge deal to the women in my family. I on the other hand, swear I was switched at the hospital, because I have none of the awesome domestic skills that my mom and grandma do. I do always try to go cheer them on though. So, the Spam cookoff ( gross, I know) is always a huge event. I always offer my suggestions but this year, I had an idea all my own. So I am going to enter, just for fun. Grandma is so delighted. She thinks it will be very meaningful to have three generations competing together. I can't cook to save my life, but honestly, could anything make Spam taste worse? Ha! So off I go to the kitchen to work on my recipe.
How are you doing Zils?0 -
This is excellent news Delirium Pie! The cookoff! You will win!
Guess what? My mom just dropped a big bag of scarves over at my house! They're very pretty. Can I send them to you? Or do you want me to write and describe each one to see if you want it?
Sending you hugs. XXXX Bobogirl
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Yummy! Spam. Not! It should be fun. That's the whole point.
Sorry about your stitch. Maybe now you'll get healthy and feel great!
Going to my appt today to get results and hear what next steps are. Hoping for rads and no more chemo!0 -
Guess what? I won! First place! I couldn't believe it. I am so worn out now though. It was a long day and long night last night. Trying to get some rest so I can convince them to start chemo tomorrow. But of course, my drama queen is right on cue tonight. I really wanted to come home and crash but she is starting in and now my mind won't let me rest. Did I post last week that I was writing her up? Well I did on Friday. That was terrible.
That would be awesome bobo. You spoil me! I trust your taste and if it's more than I can use, I will certainly pass them on.
Did you get good news today Zils? Hoping so.0 -
Congratulations DeliriumPie!
That's sensational news, but I need to know the recipe. I haven't seen Spam since I was a kid, and that was a loooooong time ago:)
So sorry you have this relentless thorn in your side, what is her problem? Try to switch off, she's not worth the angst.
Enjoy the feeling of winning for a while. I bet your family were so proud!
Enjoy being spoilt by our Bobo, she's the best!
I hope Zills stops by soon...
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Lungs the same but no more chemo! Straight onto tamoxifen tonight and rads after a little break.
Yes please share the recipe. Congratulations you must be so excited and your family so proud. Maybe it will become my new snack of choice. Hoping my break will allow my stomach and taste buds to recoup before the holiday eating begins.
Yes ditch the witch. You have enough on your plate. Don't need the added stress. Keep us posted about tomorrow.0 -
Boooo to the drama queen! DP, don't trust my taste in this case -- these are my mother's scarves! Some of them have never been worn! She was a teacher, sometimes bought them to go to fancy functions, sometimes didn't end up wearing them! They seem nice though. I think I will send and let you decide.
More info about spam contest! I cannot wait to hear what you made. XXX
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Good news on getting a break at least, Zils. I hope the tamoxifen and rads treat you well. Please note, I do not recommend spam for reblossoming taste buds. Lol. The contest theme this year was sandwiches so I made a Philly cheese"steak". I actually got it to be edible and most of the spam taste gone. I was pretty excited last night on my third variation and had to call my mom to say "I think I'm getting close. I just tasted it and didn't want to throw up this time!" Hehe. I can share the recipe when I get to the computer but its so funny how much work it becomes to make spam not taste like spam. On a normal day, much easier to just cook with things that actually taste good. My mom won 2nd place last year with spam tamales. They were actually very tasty and had no spam texture or taste. But gosh who would want to go to all that trouble!? Other than the fine residents of Hawaii of course. The spam capital of the world. They love the stuff there, proportedly stemming from meat availability during WW II. So there's some spam trivia for you. I am queen of useless facts. One reason chemo brain gets me down, I hate not being able to spout out random facts like a living version of pop up video.
So drama queen is my bosses sister. I almost feel bad for her because it is like punishing a teenager who was never given any rules or discipline their whole life. They just don't understand what they are doing wrong, because they were always allowed to behave badly. Old dog, new tricks or something,,, in my opinion, the majority of blame is really with my boss for having ser the expectation that her behavior is acceptable. Of course now that she has a New boss, she is trying to appear strict and non biased. She acts like i should have been all over this behavior since Sis reports to me. But that has never been ok to do before. It was evident from my first day that the entire office pussyfoots around this person to avoid outbursts, including my director. Anyhow, when I wrote her up on Friday, the queen of mean, snippy, mrs badass, do what I want and don't apologize for who I am, immediately dissolved into a weaping pile of mush. We could not even get through the conversation. Had to send her home for the day. I was so ready to give her a piece of my mind too, but couldn't even speak with any conviction when going through the long list of issues. So after missing two deadlines of when she needed to get back with me to discuss, she decides to go confrontational tonight because she thought she had some conspiracy about the write up figured out. Besides the fact that I was flat exhausted and trying to unplug for thirty stinkin minutes, it turned out ok because we finally got to have our discussion and she was fiesty enough to spar with and I was tired enough to just be blunt. So for now, she commits to try harder, but a big issue is her lack of consistency, so not holding my breath yet. Whew! Sorry for the rant. Did I mention before that I was about to start job hunting just before my dx? All because of this bizarre company dynamic among other odd corporate issues. BUT, since the company has been very accommodating with my appt schedule and the fact that cancer patients aren't highly marketable new hires, I know I just need to shut up and try to ride this out. All that biting my tongue is awfully hard though. Thank goodness y'all patiently let me rant. Since I started treatment, I've discovered that the more tired I am, the worse my insomnia is. I used to blame the steroids, but it must just be a crossed wire in my brain. Also attached to rambling, which I also blamed steroids for. Ha!
So I leave you with two random questions (it was just one until this song came on the radio):
Is all if this healthcare hullabaloo affecting your treatments, insurance or future plans?
And
At your hospitals and/or clinics play an unusual amount of Elton John songs?
Thanks ariom, bobo, and Zils for the congrats. It was so nice to have a couple of carefree hours and just enjoy being with my family. I can't remember the last time I was able to do that. Very grateful for that time and vow to make an effort to live more that way, appreciating the time I have and not letting all those moments slip by me while I'm buried in work.
I know, I said I was leaving, goodnight! I'm going, really, done, that's all, really. :-)0 -
Ranting always allowed. Glad you were able to have the talk. Don't know about obamacare yet. Don't want to think about it and not sure anyone has the answers.
Nap time. Be back later.0 -
The NP cut the suture out, like I knew she would. I think she likes playing surgeon. She cut the loop off my port incision before and it hurt like heck. Wasn't as bad this time. Then after much of my pouting, she agreed to let me start chemo today. She wanted me to wait until Friday to start, but I did not want to play practice for another week so she relented. Rads will start next Wednesday. Already not feeling so good and have had diarrhea. Never an issue before. Hopefully this is as bad as it gets. The short infusion time was great. It was only an hour and five minutes total. Coming from my marathon taxol rounds of 5 hours, it was a dream. Already mourning my hair again. It looks like real hair now that I was delayed so long. It's like a really really short pixie cut. It only took just under 3 months pfc to get there. Going to try to fight these steroids and grab a nap.
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DeliriumPie--I had rads at a place that played Lucy In the Sky With Diamonds (Beatles/John Lennon version, not Elton John version) every single treatment. I thought that was quite a bizarre choice.
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That's funny Mary. In the op room at the hospital I hadn't port study done last week they were playing greatest hits I guess. I was there for an hours worth. At the cancer center, they have a player piano and must have the Elton greatest hits reel too. It's actually very pleasant on the piano. It's just funny how often I hear him now. Wondered if its considered universally soothing and upbeat. And if the staff gets sick of it. Lol
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ooh I don't like this Halaven. I hope it's doing its job because its kicking my butt. Thinking I had too long of a break from chemo and my mind shut out what it felt like. For some reason I never even considered it would knock me down. Of course, I have not been able to read about it like a fiend, like I was able to for AC and taxol. I did a search on here and it is only mentioned in the stage IV threads. I'm certainly not going to bother them with my trivial SE questions.
On another note, it's freezing! I never realized that my pecs contracted and spasm in response to the cold before all these changes. Is it just me?0
