Starting/declining hormone therapy Nov, Dec, Jan 2018
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Egregious, a full year of dealing withcancer is hard enough without adding in grieving a beloved husband. Thinking of you!
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Thinking of you today, Egregious. It's been a very tough year for you in so many ways. I hope that somehow this year will show you kindness in as many ways as possible. Many soft, comforting hugs.
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Well, it's official, after having a 'probable MS or high risk for MS' historical dx for the past 10 years, I've now moved past that into active MS dx.
I have over 15 new lesions in my brain, brainstem, and cerebellum that had appeared since my last Brain MRI, Jan 2019.
Most measure 5-8 mm but my Neurologist was very clear, that in no way shape or size are these lesions at all cancerous. They are MS related (very different MRI characteristics) and represent areas of damage to my brain (white and grey matter) due to my immune system attacking it mistakenly. And like Google told me, he confirmed for me that yes, lesions found in the brainstem and cerebellum don't usually happen unless in MS or other demyelinating diseases.
Funny, I did teach my Neuro something. I mentioned to him about finding info that lack of estrogen seems to bring on more severe MS attacks in women, to which he said, "No. That's not correct, as fas as I know.". He then did a quick check on his computer, and said, and I quote, "Well, look at that! Sure enough. It's right there, in menopause and in post-partum, decreasing levels of estrogen, estradoil, and progesterone, can trigger MS attacks."
We talked over some of my other symptoms and concerns, and after doing so he agreed it would be good to get a baseline of my spine, even if nothing shows up in my spinal cor. So I go in next week to have a Thoracic Spinal MRI, with and without contrast, to determine if I also have lesions there too. I've never had one before so I'm a bit nervous about what they will find. Fingers crossed nothing is seen.
I also see Ear Nose and Throat next week to continue to try to unravel the mystery of why my lymph nodes continue to swell, itch, and ache even though it's clear that my allergic reaction to Zoladex has passed by now. My throat tissue no longer swells, it just "burns" and "itches". I'm half tempted to ask my PCP for another NECK US, since I can feel multiple lymph nodes now and they are definitely growing, not shrinking. Le Sigh. I also have trouble swallowing at times, but my Neuro said that could be due to the MS and where my lesions are. Guess I'll hold of on asking about the US until I see the ENT, maybe he might order one. Never know.
The Spoonie Saga continues.
Hope you all can have a peaceful healing weekend. I'm going to do my best to forget all medical related issues and just unplug.
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Ok, so here's the story of what happened at my recent MO appt, earlier this week. It was a DOOOOZEY of an appt and never in a million years would I, nor my sister, have envisioned it going as it did. I doubt I will ever have this happen again.
The nurse that roomed us was clearly upset with me, even though I did not know her from Adam. I'm guessing she was one of the nurses that I had pissed off the past few weeks while trying to get care, to get answers, and to figure out the nightmare I was stuck in. I was met with ice from this nurse, no hello, no anything, just her telling me that I was late (ummm there was a car crash and traffic we couldn't avoid). We had called to say we'd be about 10 mins late, but she apparently didn't care. She told me that "She will try to fit in whatever she can in the remaining time left for the appt but she HAS to leave at 3:45 for a meeting. We tried to call you this morning due to this but you said you couldn't come in earlier. If there is more you need to cover, you'll have to reschedule.".
I was taken aback. Umm, yeah, they'd called. They said "Could you come in earlier at 2:20?", I'd said no, that I was driving up with my sister and was meeting her at a specific time. The nurse had hung up as she was saying "Ok....*click*". I'd been shocked at that but whatever. So I told this nurse that no one had told me the reason and if someone had clarified then I could have possibly come in earlier. Then I asked her why my appt was so short, as usually my appts were 45 mins to an hour with my dr. She corrected me sternly "No YOUR appts are always 20 mins. That is always how it's been. Not an hour. Not 45. 20 mins.". My sister and I shared a look and I decided to not say anything else lest I lose my arm to the blood pressure cuff she was manhandling around my arm.
She finished rooming me and said the dr would be right in. I honestly didn't know what to expect from my MO at this point. I wasn't sure if she was going to be upset at me as clearly the rest of the staff was and I honestly was very thankful I'd taken my sister to witness this all with me.
My MO walked in. Sat down. I couldn't read her. After some general greetings and introduction to my sister she said, "I want to be frank with you, is that alright?". I nodded and immediately my heart stuck in my throat. I was SURE I was going to be kicked out from this clinic and that she had had it with me as well.
Instead, she took a breath and said (something to the tune of), "Good. I knew, just from having been your dr for a short time, that you would rather me speak truthfully and be candid rather than pretend that the events of the past few weeks didn't happen. I think over this past year you and I have come to have a bond and I truly care for you and because of that, I want you to know that I believe it's in your best interest for you to seek care elsewhere. The current structure and protocol in this clinic makes it nearly impossible for me to provide you with the kind of care you need and deserve. As I think you and your sister would agree, the environment here has become toxic and is truly negatively impacting your care."
My sister and I's jaws had dropped to the floor at this point.
The rest of the appt went a bit like this.....
We reviewed the events of this summer, having taken place since my Zoladex injection on 07/02, to which she apologized profusely for the treatment I had received from her nurses. She expressed that she had personally read through the summers worth of Portal Messages prior to my appt. In fact she had her nurses print it out and she mentioned they were not happy about that. After reading it all and looking at the documents I'd sent, the photos, and the questions I'd asked, she could see no reason at all for their behavior, for their refusal to pass info on to her, for their refusing to allow me to talk with her, or to see her, and that there was nothing I had done wrong or inappropriate. She reassured me that the issue was with the staff, not with me, her patient.
In fact, she shared with me the nurses' version of the day I had showed up at the clinic, when I had thought I had an appt, and there happened to be a scheduling error. Instead of telling the truth to my MO, the nurse had said I was out in the lobby DEMANDING TO BE SEEN and that I wouldn't leave until I had seen her. I clarified with my dr about how events had really gone and she said something to the effect of "It's sad, really it is. When the nurse was telling me about how poorly and rudely you were behaving, it did not click with the version of you I had come to know over the past 8 months. You're intelligent, organized, kind, and very patient. It just didn't jive at all. Now I see why. It's unfortunate that happened and again, I'm so sorry that you had to deal with this on top of everything else with the Zoladex issue. You are our patient, your care SHOULD be our first thought, and as you can see, that's not the case for some here. I wish it was because I really enjoy seeing you. "
My MO stated this was not the first time she had had to have a conversation like this at this particular clinic nor the first time here that she had to refer patients that she would prefer to continue to see to other providers. In fact, she went on to say, that frankly, between my sister and I, she is in the process of looking for a new "home" as she feels she is doing a disservice to her patients by trying to fit their care into a structure that is not conducive to quality care and puts them at risk for stress and duress that they can not handle while trying to walk the cancer journey they are on. She told me that unfortunately she has time she has to put in here, before she could move on, but she wanted to do all she could for me to be sure I found a new MO that would be able to give me the care I needed.
She was visibly concerned for my well being and so very sympathetic, empathetic, and apologetic for the entire summer, to which I expressed great appreciation for her honesty and care. She gave me 3 names of MOs in another system. Funny story, the main one she suggested is one I also one picked out when I was looking for my current MO in Jan! So I feel comfortable going to her for future care.
My MO will follow up with me after my Breast MRI & Tumor Markers in 3 weeks. She said if I needed anything, had questions, or anything at all, that I should leave a message with scheduling for her to call me back and she will do so as soon as possible. I am not to message through the Portal, well, for obvious reasons since that didn't go well this summer. My MO then went on to outline the kind of treatment plan she would prefer I have going forward; including 6 month 3D Mammo alternating with Breast MRI, tumor Markers are a must, plus a yearly Bone Scan due to my not being able to tolerate/allergic to Endocrine Meds. If we can catch Bone Mets early she said it's better because there are RADs options the smaller they are.
Welp, this turned into a long story, sorry yall but wow, what a ride that hour long appt was. (HAHAHA freakin nurse had tried to scare me and my MO had stayed an hour with me despite the nurse saying she'd have to leave in 20 mins!!)
My sister and I left the appt feeling relieved and hopeful. All good things. I'm sad I won't be seeing her any longer but I am very very very relieved I will not have to deal with the nurses poor care of my case going forward. So, we'll see what the next MO brings me. I'm sure I'm in good hands.
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WOW!
My jaw is also on the floor re your MO's story!!!!
And I am so very sorry the MS is now official.
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Spoonie…..I have been following you and have a couple of comments.
-You are an absolutely amazing person! With everything you have gone through and are dealing with now, you have a good head on your shoulders and you are your best advocate!
-How the heck do those horrible nurses get away with treating a patient like they do??? And the MO is aware of their attitude/behavior, how do they still have a job? I have respect for your old MO, but changing doctors now is definitely in your best interest.
-Also, you are a phenomenal writer! Perhaps you should consider writing a book and I would love to buy an autographed copy!!!
-I am so sorry about your MS diagnosis. Love and prayers to you, Spoonie!
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Spoonie - what an amazing story your MO was outstandingly honest and supportive. She should be you are an awesome woman - strong smart and caring - you totally rock. I am sorry about the MS diagnosis but you can handle this. My cousin has MS and he is still in great shape in his sixties and he got in it his twenties. I am so sorry for everything you have had to go through but girl you blow me away just by being you. Wishing you nothing but good luck and great things going forward.
Hugs
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Hi - I'm chiming in here, cheering you on, Spoonie. Yes, as Flower says, you are a gifted, fabulous writer. You bring the whole thing alive.
First, OMG on the story about the MO office. I wish you a good, supportive, professional new MO office! It's appalling that an oncology staff could be so inappropriate and cold and awful to a patient. We go around HOPING that oncology attracts compassionate people, for heaven's sake!
I wonder, were those inappropriate screeners you had so much trouble with actual NURSES or were they MA's? Just curious....the person who puts us in the room and takes BP etc is usually a Medical Assistant. Their training is very minimal. Usually, RN's have a more appropriate level of professionalism. A few decades ago, those would have all been actual nurses, but now MA's can hop into a position with a super short training period. So says my own DD. She's a Nurse Practitioner, and has had her share of great MA's and absolutely horrible ones assigned to her.
Okay, now MS. You sound like a terrifically informed, well prepared and intellectually curious person, who's going to bring all that to this next diagnosis. Like you, I'm close to people with MS, and there are so many ways it can progress. Often very slowly, as you know. I'm so sorry you have this new challenge on top of all the other ones.
I'm so glad that you share your journey on this thread. I feel so connected to you, empathizing with all your struggles.
Sending warm wishes and positive vibes.
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Spoonie—I have kept up with your saga, mostly silently cheering you on, but please know we are all sending our very best, warmest, most supportive wishes your way. Cannot believe you have to deal with MS on top of everything else, but perhaps there is some small comfort in having a diagnosis. Keep us informed as you go valiantly forward.
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Spoonie, I'm glad you were able to get some validation from your MO. Sorry that this leaves you in the position of looking for a doctor again. Also very sorry to hear that the health issues continue. I hope your next appointments continue to bring you answers and plans for moving forward.
I was interested to see you mention Lyme Disease. Did that predate your health stuff or was it just another thing? Just wondering because I had a complicated case of Lyme in my early 20s (thanks to an arrogant doctor that refused to diagnose me despite obvious symptoms and a job in the woods) and have spent a lot of my adult life trying to figure out weird health stuff. Not to the extremes you have, but there have been parts of your journey that sound awfully familiar. Obviously not the most important question right now though, so feel free to ignore. You've got more important things to sort out. Sending strength as you figure out your next steps.
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Spoonie, I am a newbie, but posted a few times. So sorry to hear about what's happening to you. One day at a time, one day at a time...
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Spoonie, you have been through so much. Looks like you are finally getting some answers
Your MO was quite remarkable. I had the same question another poster had, were these people really nurses? As an RN, I cannot ever imagine treating any of my patients with this level of disrespect and inflated sense of entitlement. I appreciate what your MO did but why isn't she writing them up and making sure they are not able to work in this practice. If anyone should be leaving, it should be them. I don't know if you have the energy to do this but I would complain and complain loudly about their behavior! I'd even mention legal action. To not allow you contact with your MO and outright lie about your behavior at isso wrong. As an RN, I find this infuriating. Good luck to you. You deserve smooth sailing from here on out.
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Spoonie, why is it so hard to get our medical professionals to listen to us? You deserve the very best treatment available! Keep fighting for it. I know if I ever need an advocate, I'm going to call on you! You're amazing!
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Hi ladies. It's been quite the overwhelming week or so here. More on the way unfortunately as it seems this parade of appts and scans won't be tapering off until the middle of Oct. In the meantime though thank you all for the lovely comments, support, and as always your kind hearts and love. Since I'm mostly alone, no bf or sig other for the past 2 years, living with my puppy and kitty, hearing from you all is a like getting an emotional and mental shot in the arm. LOL. I so very much appreciate it.
On that note, please please please tell me how are you all doing????????????
Has everyone seemed to find a niche with their hormonal therapy that's working for them and not affecting their QOL? Fingers are crossed this is true for the majority of ya'll.
Salamandra, have you found a brand of Tamoxifen that's working? I know you were still trying to switch things up awhile back. How's the energy levels? Did the Provigil help?
Dani, what's new in your world? Hope you are still finding peace of mind with the benign results.
Wised, have you noticed any difference in your hair since adding the Nioxin to the mix?
Ingerp, how did the first salon trip go? I hope the hair turned out beautifully.
HikingLady, MountainMia, Egregious, Pebbles, LibraryGirl, GiddyUpGal, EdJ3, and everyone else I've inadvertently forgotten for the moment on this wondermous thread, please know that I am sending you all healing thoughts your way and hoping the beginnings of Fall are being kind to you all.
Much love...
PS -- I did want to mention that I have filed a complaint with the clinic at my former MO's in regards to 2 specific nurses, so that is all in the works. While it takes some of my precious spoons, I think it's important to follow up on so that future patients may have better treatment than I did. Hopefully those nurses will make different choices with patients going forward.
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spoonie- so good to here from you! I know that you are busy with all the appointments. I havent been on BCO much the past few weeks. The grandkids keep me running nonstop! I'm glad you are doing the report on the nurses. I had one nurse at radiation that sent me into a panic for weeks the last day if my radiation. I wished I had said something now! When it happened I was to emotional! That last day of radiation she said "if I were you I would have had a BMX". It was like she knew something that I didn't. Why would she even say that to a patient????
I'm still sending you good vibes and lifting you up!!
Teresa
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OK so my post didn't post
I sent you wishes and hugs, Spoonie, with blue skies and good news.
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Spoonie you are so sweet to ask. It wasn’t a huge change but I went ahead and made appts to repeat the color at the end of Oct and the end of Dec. I think it’ll lighten up each time. Still waiting for some more length.
For me the AI is going okay. I don’t notice much in the way of SEs other than being a little stiff when I get up after sitting a long time and being pretty low energy. I wonder if I’ll feel different in 4+ years when I no longer have to take it. It seems like a long way off.
Anyway—below is a picture from Disney World, something I treat myself to every year or two. 😊
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Ingerp, your hair is so pretty!
Vargadoll, it's never too late to file a complaint! it totally pisses me off how little oversight there is of the medical profession.
Spoons, I have not exactly found my AI niche, so to speak. So far I have extreme fatigue, neuropathy, and incredible insomnia on anastrozole. The insomnia is what's bothering me the most. Everything seems so much worse when you haven't had enough sleep. I I'm so glad that you posted to keep us up-to-date and I am glad that the whirlwind of scans is finally going to slow down for you. Good for you for filing a complaint. it's hard when you're already dealing with medical issues because you really need all of your resources of energy for yourself.
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Spoonie - glad to hear from you. And I'm glad you decided to file a complaint about those nurses. I'm sure your MO would have liked to do it herself but probably can't.
Ingerp - Your hair looks great!
Wised - also having a lot of insomnia here. I can get to sleep but staying asleep is impossible. I'm not sure if its the anastrozole though. I also have trouble focusing which may just be the insomnia, but I have decided to leave no stone unturned and am seeing a therapist in case it's just anxiety. I do think I have some anxiety, it's just hard to tell if that is causing the insomnia and poor focus, or if the insomnia is causing the poor focus, but the lack of ability to focus is definitely starting to cause me some anxiety.
I'm off work from now until a week from Monday. Hopefully that will give me a little bit of a reset. Going to my SIL's wedding, and then going to visit some old friends. Its not the most glamorous of vacations, but at least it doesn't involve any surgery!
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Spoonie, so glad you checked in! I'm glad you filed the complaint about the nurses at your former MO's office. Have you chosen/met your new MO yet?
Ingerp, your hair looks great!
I can really sympathize with hapa, Wised and anyone else struggling with insomnia. I've struggled with it off and on since my mom died 16 years ago. It seems to be my “under a lot of stress" symptom. Here's what worked for me before breast cancer (note that I don’t always take my own advice!)... I don't drink caffeine after lunch. No matter how tired I am, I only nap for 30 minutes and then only if I can wake up by 4 or 4:30 pm. I take melatonin at bedtime. Currently I take Restful Sleep gummies by Olly. If I have a couple of nights of bad sleep, I take Zquil at bedtime for a few days until I'm back into a good sleep rhythm. The biggest thing that helped me was getting a Kindle. I have the Paperwhite version. It's backlit, so I can pick it up and read in the dark without bothering my husband, and without moving to the guest room or living room sofa. I feel anxious if it's not on my nightstand when I go to sleep. Since breast cancer, the anastrozole gave me horrible hot flashes, including in the middle of night. My MO had me try a low dose of Effexor. It's an antidepressant also used to treat anxiety and panic issues. Part of me was reluctant to take a pill to treat the side effects of another pill, but the other part of me was desperate for a good night's sleep. Besides helping with the hot flashes, it also helped with some anxiety I was experiencing. It started after my mom died, but got worse in my mid 40's when I hit peri menopause. Less anxiety also helps me sleep better. This approach may not be for everyone, but thought I'd share anyway.
My only other AI side effect is stiff and sore feet when I first get out of bed or if I've been sitting for a while. I had a DEXA scan last summer which found mild osteopenia. I'm treating it for now with increased calcium in my diet and more weight bearing exercise. My MO will order another scan in the summer of 2020, and may consider a bone building medication then if things haven't improved. I continue to be grateful to all of you, and am sending big hugs to you all!
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Spoonie- Glad you checked in and thank you for asking! This was a new adventure I did this past weekend. I have always wanted to do it and have a sweet friend that has been planning it since shortly after my diagnosis. She would use it as encouragement along the way during my treatment. It was absolutely amazing, and it kinda helped that my tandem instructor was a really hot Brazilian
I am hoping you are getting some answers from your many appointments of testing. I am so sorry you are going through all of this. Bravo to you for filing the complaint, it was needed and I admire how well you advocate for yourself. Sending all the good thoughts as you progress through your upcoming appointments. Vargadoll- WOW is all I have to say about that nurse. What an A-hole.
Hapa, Wised, and GreenHarbor- I am with you on the insomnia. I have been falling asleep better than I was, but staying asleep just does not happen. Between waking with night sweats, waking to pee, and waking with some REALLY crazy dreams that I have been having since starting effexor, it is exhausting.
My fatigue is still a problem and also just feel like I have no motivation to socialize. I am going to try to get back to the gym, and have made plans to walk the trails next week with a couple friends. I picked up some extra hours at work a while back to see if I could handle it, it nearly wiped me out. hapa, I understand the inability to focus, and I am experiencing what I have seen some people refer to as brain fog. My thinking is just not the same and I am super self-conscious at work because I have so much multi tasking I have to do and it is harder now to do that. I forget simple things, like somebody's name, or more importantly forgetting to do task I am supposed to be doing. This becomes worse on days the fatigue is worse. I would give anything to just feel rested.
Ingerp- What a lovely picture, glad you treated yourself to a trip to Disney!!!!! And the hair looks fabulous!
Hugs to all, I appreciate all of you
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Warm wishes to everyone who shares here. I read and think and absorb all posts, and appreciate everyone's insights and sharing.
Sleep: I read in bed on my iPad/Kindle every night. I fall asleep just fine, no problem. I wake up several times each night to pee, or because of hot flashes, and due to random anxiety crap that loads my brain up. However, bad sleeping has been the case for many years, so I can't really blame it on my AI. I sometimes choose Fun Units over Better Sleep, and I have a glass of wine one or two evenings a week, which makes my sleep even more wakeful than usual.
Weight. Ugh. I gained 8# during the first month after starting my AI. Since then, I've been super careful about what I eat (very few simple carbs) and how much (portion control) and what hours (trying to eat within 11 hours each day), and I've lost that 8#, but BOY was it hard to do that! Took about 6 months. Still need to lose another 15, and I'm sure that will be slow going, as well.
How I feel: My finger joints (thumbs and pinkies) are weird, feeling weak and compromised. All hip and knee joints are grumpy and stiff. Vaginal dryness, but I already had that after menopause. Fatigue? YES--I don't have the stamina I used to have, and I feel sleepy mid afternoon. Brain fog? A bit. I can't keep track of a ton of stuff at once, and I used to be a good multi-tasker. Slower processing. It takes some planning and more time to do complex things. I make lists. I used to be a speedy thinker, so this is irritating to me, but probably not noticeable to others. My 'work-arounds' include planning my best brain time of day (morning!) for complicated thinking or organization or things that require brain or physical stamina. I have no idea how much of this is my AI or just being 62. I've never been this old before, ha ha, and have also never been on an AI until 11 months ago!
How I'm coping: 1 hour of exercise daily, and I try to drink extra water.
Counting my blessings: Spoonie! Your challenges are enormous. I have quite a few friends living through devastating health issues (progressive disease causing paralysis! amputation of a foot!) and family dramas and some tragic losses (husband with early onset Alzheimer's, suicide of loved ones!). I'm able to peek out of my Woe Is Me bubble enough now to notice that my hills to climb might not really be the steepest ones. In addition to being furious that I got cancer (twice!) ---Oops, is being angry okay to admit? Sorry, but it's true---I'm also grateful that TX including AI gives me a shot at beating it. Grrr. And, also, Yay. It's complicated.
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WOOHOO DANI!!! I did that back in the day, although not a tandem jump but static line. I still want to freefall some day. I’ve talked to my kids about it and they’re chicken! 😂😂
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Varga -- That is awful that that nurse made that statement to you. Very unprofessional besides rude and hurtful. Wow. So sorry you had to go through the anxiety and emotional stress that caused. I was SOOOO very emotional, sad, and all over the place my final RADs and cannot even begin to fathom how I could have had the chance to handle a statement like the one you heard. Ugggh. Thankful to hear you are keeping busy and doing as well as can be. Grandkids sound amazing. Enjoy them, every second. What a gem kids are in general.
Edj3 - This weekend was all blue skies and perfect fall weather. Thanks for sending it my way!
The hugs and wishes for good news are muchly appreciated as well. Fingers crossed that I can post some later this week. Would be such a awesome change of pace! Hope the skies are clear and the sun is shining on your face for your runs this week as you make final preparations for your upcoming marathon! I miss that "runner high" something fierce, so I am running with you in your pocket lol. Enjoy the race and may its "rewards" be a salve stored up for rainy days that may be ahead. I know things will be a "bit" off kilter afterwards as you add in the Tamoxifen to your routine. Keep us posted on how it goes. I wish for little to ZERO SEs to appear in the future. Hang in there.Ingerp - Woot! The locks are looking lovely! Thanks for sharing the pict. Nice to see a smiley, happy, joyful face on the boards. Plus, can't hide the fact that the drink your holding looks amazing as well!
Hoping that as the months progress your hair will continue to resemble more and more dear Rapunzel (lol) and that the SEs will stay away. Oh, and if you ever go parachuting, like Dani did, share a pict! You are braver than I, my dear! Wised - Sorry to hear that you're in "SE City". Uggh. Has your MO suggested or tried anything to help with the neuropathy and insomnia? I know mine gave me Gabapentin for my bone pain and neuropathy. It helped with the later, but did nothing for the bone pain which was having much more of a QOL impact. Maybe you could ask yours about some meds to help? I used to be opposed to taking rx meds for sleep but I relented this year. Lunesta has been a godsend. Doesn't leave me groggy in the morning but I do have to take it about 2 hours earlier than I want to sleep before it kicks in. In the days when I wasn't using a rx, I used Melatonin ND from Premier Research Labs. It worked fairly well and reliably, much better than any other supplement I'd tried over the past 15 years of my insomnia. Maybe it might help for you. Hang in there and may Mr. Sandman pay you a visit asap!
Hapa - OMG have soooooo much fun on your vacation! Who cares if it's not all "champagne wishes and caviar dreams", it's a change of scenery, fun with friends and family, and like you said, a time to reset.
May you come home relaxed, recharged, and ready to tackle the frustrating cyclical relationship between anxiety/stress and insomnia. Green Harbor - I see my new MO this week on Thursday. She was one of the 3 drs my former MO suggested I see. Ironically, this new MO was in my Top 3 when looking for the former. LOL. So, I didn't have to research her at all, just knew she was a good place to start. Fingers crossed she and I can work well together. Thanks for asking! Also, thanks for sharing all your own insomnia "battle plans". I'm sure they will help some of the rest of us, as it seems the insomnia-bug is something most of us suffer from. Like you, I also don't take my own advice (hahahaha) and found many similar things in your list that I "try" to employ on a semi-regular basis. Glad they are working for you and that the Effexor helped you the rest of the way into zzzz-land. Sleep is SOOOOO important. I also caved on taking a pill when BC hit, Lunesta has been wonderful. Effexor made me almost suicidal in a matter of weeks, so for me that's a no go, but I do read about it working amazingly well for many on the boards. Thankful you are one of them.
One thing that helped me with sleep is taking the TV out of my bedroom. Now my bed is only for sleeping and snuggling with my furbabies. Wish it had other uses (lol) but sadly without a boyfriend these days, I can dream. Dani - WOW! Congrats to you for taking that literal "big step" out of that plane!!!!! Thanks for sharing such a milestone with us!!! Were you just scared out of your mind the moment your tandem hot guy took the plunge?? I've always thought about doing it but am beyond chicken. What an amazing memory you and your friend will have for years to come. That must have been quite a mental pick me up to have on some glum days when you were battling through active treatment stages. How wonderful that your friend was there for you in that fashion.
I'm sure you cherish her to pieces. Good friends are so hard to find! Good luck in the gym and on the trails. I think it's easier to stick to those kind of plans when we have friends and such to pair up with. Maybe that extra bit of activity will help you stay asleep longer or perhaps help you feel less fatigued. Keep us posted.HikingLady - Congrats on the 8 pound weight loss!!! Slow and steady wins the race as my dad always says. Gaining weight sure seems to be the trend for so many on AIs. I think you're onto something with the idea of only eating between certain hours. I periodically try to fast between my evening meal and breakfast, 13-14 hrs between them, as there is research showing it does help reduce risk of recurrence. I need to get back into doing that every day. Thanks for the reminder to get back on that wagon. I think your list of ways you're tackling the obstacles in your life are really helpful, especially counting the blessings section. No matter how awful all of our individual days may and can be, if we can find a few thin slices of joy in there somewhere we are better for it. It may be as simple as seeing a butterfly flit by and the smile it brings to your face, or watching a puppy gambole about like a free spirit, or talking with a friend and forgetting about the C word for 5 mins....it all is a reason to be thankful for those moments, those smiles, those breaths, and the fight that gets us here. Oh and ps YES be MAD, be mad as hell! Totes ok and helpful in my book! Break some cheap plates on a wall, yell in a car or a field out in the middle of nowhere, beat up a pillow, it'll probably make a person feel better and having dealt with the emotion a bit will allow us to go on feeling other things in it's place for a time being. At least that's been my experience:).
As for me, I'm a bit nervous. Wednesday is coming with my first post-surgical Breast MRI. Scanxiety is setting in but am mostly hopeful it will be clear and I can put that "baby" to bed as it were. Will keep ya'll posted.
Sending hugs and healing to you all.
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I want to write to all of you, but I'm in bed. My doc put me on Trazodone for sleep and I can feel the beginnings of it starting to take hold around the edges of my dreams.
Just this,: I as am sending you the best boyfriend energy of bc your life! I see the two of you together doing your favorite things while listening to your favorite song. You help each other just the right amount. This relationship ticks all the boxes. I love you Spoonie! I feel grateful that I have gotten to know you and son some guy will too!
Love and peace to you all!
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Omg Wised you brought some surprise happy tears to my evening. Thank you for the amazing wishes for me. Love you muy friend as well. Weve all been through the ringer and it's priceless to have a second family here that completely understand the fears & tribulations we go through on these journeys.
Haven't had a boyfriend in nearly 2 years. Last guy broke my heart after I waited for 4 years for him to pull his life together so we could truly be a couple. Didn't work out the way I hoped. But knowing this past year and a half included all if this wondermous journey *geustures around to my 3" inch ring binder of fun* I now know he wouldn't have been the person I needed for this chapter of my life. Not by a long shot. Some days I think it's in small ways easier to be alone but then on other days, like today when i broke in to pieces I truly wished I had a rock, a kindhearted loving man to pick me back up & hold me .
Maybe someday again I'll risk my heart if this awesome boyfriend you're wishing me comes along, Wised! I'll krep you posted if I see him! Lololol
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Spoonie, you wrote "Some days I think it's in small ways easier to be alone but then on other days, like today when i broke in to pieces I truly wished I had a rock, a kindhearted loving man to pick me back up & hold me ."
And it's the adjectives you used to describe your future boyfriend that make all the difference.
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I am on the struggle bus. I've been on Letrozole for two months now and the worst SE's are fatigue and not sleeping. I also have anxiety and feel it has exacerbated my anxiety to where my mind won't turn off. I am on Lexapro and Busiprone. I sent a message to my MO and her nurse responded go off the med for two weeks and see how you feel. I didn't care for that response so I sent a message to my PCP to see what she suggests. I thought about melatonin for sleeping or CBD oil. Anxiety I am trying different calming techniques. Not sure what else to do.....
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Jenkins00 you say that you didn't care for the MO/nurse suggestion to stop your Lexapro for two weeks and see how you feel. For what it's worth, that's exactly what my MO has explained would be his plan for me, if I were to develop difficult side effects. He has described this as a first step, because, he says, very often, the body "re-sets," and once you re-start the AI, you often won't have that same difficult set of SE's. I haven't personally gone through this, but he has given me a lot of this information as "just in case" stuff to know. Plan A: stop for 2 weeks and re-start after that. Plan B: switch to another brand. I'm sharing this just to add what my MO has said to your context for this difficult situation.
Fatigue: I am slower in the afternoon than I used to be, but can manage my activity level as a work-around. Drinking extra water and my daily one hour of exercise are part of my plan---when I have to skip exercise, I'm a mess: joint pain, worse sleep, and on and on. Sleeping: Not great since about age 45 (I'm 62), so this is probably not blamable on my AI. I go to sleep okay, but then I wake up all night long. Usually, I can go back to sleep. Anxiety: I do not have that---it sounds awful. Your meditation plan sounds like a great idea, for sure. Maybe asking PCP for medication help for anxiety could be another idea. Ask whether any anti-anxiety meds can also help w/ sleep issues?
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HikingLady - The nurse wants me to stop the Letrozole for two weeks. For my anxiety I'm on Busiprone and depression Lexapro. I never thought about the "re-set". Thanks for sharing this and its something to think about. I think also I got scared of stopping the Letrozole for two weeks because of reoccurrence.
I know my dosage can be higher on my anxiety/depression meds as I'm currently on a low dosage.
Exercise is key and I am back to walking 30 minutes a day.
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Thank you my friend, Edj3. My ex was kind but couldn't get his priorites straight and spent 18 hours of his days at work for the most part. I got tired of waiting. So, for now, I have occasional dreams of a bf, and haven't given up total hope yet. Although, it's hard to wonder who would want to commit themselves to such a sickly person, that cannot work, and now boasts some 13 dxs, the biggest and most recent of which is MS, which is incurable and increasingly debilitating over time. *shrugs* Maybe someday....for now I get plenty of snuggles from my kitty and pup. I have no idea how many tears their fur has absorbed over the years lol.
In other news, met my new MO today. I like her. She's Irish, accent and all.
And VERY direct and to the point, as my former MO had described her. But, she has a sense of humor, is personable, and kind. I'm relieved to have had it go so well.I also feel relief in another way -- she ABSOLUETLY does not want me to try any further ovarian suppression due to my Zoladex allergy. She confirmed what I had found out on Google, that often when a patient, even as rare as it is, is allergic to one of these meds, the majority also prove allergic to the other options. Given how severe my previous reaction was (her words from looking at my history) she said it would be dangerous to even try another. I was worried my new MO might be very very very adamant that I try the last option available to me so like I said I was relieved to hear her say that would likely be a very negative experience. She went on to explain that given my poor response to 5 mg of Tamoxifen as well, even if I did prove non-allergic to the Lupron option, she was fairly certain I would not be able to tolerate the A/I as well. She does not recommend surgery for me, also for these same reasons.
It should feel scary, being "set free" so to speak, without any Systemic Therapy on board and no surgery alternatives either, but like she said, there are much bigger and more active dxs on my plate for the time being. Her thinking was in alignment with mine in that may be where my time and spoons would best be spent. So I will take things one day at a time in the NO Endocrine treatment category and see where the months and years take me.
We talked about my 28-35% RR/METs and she brought up a few things that, besides the MS dx should also be my new focus ---> weight loss and exercising. My MO said that without Endocrine therapy my best options to keeping my risks down are reducing the adipose tissue (aka FAT), which produces estrogen, which in turn will reduce risk of breast cancer.
"After a median follow-up of 11.4 years, women with a 5% or greater weight loss (n = 8,175) had a 12% lower breast cancer incidence, which was significant. This finding remained the same after adjusting for mammography frequency. Women who had a 5% or more weight gain did not have a higher overall incidence of breast cancer, but they did have a significantly higher incidence of triple-negative breast cancer (hazard ratio = 1.54, 95% confidence interval = 1.16–2.05)."
And exercise, which I didn't know, can reduce RR. Learn something new every day. I mean, I knew in general it was good for us, obviously, but didn't know it impacts how our bodies use and communicate with hormones. A good article by Dr. Susan Love, might make you laugh when she talks about cute little mice on treadmills, but the short and long term studies they've done on how exercise changes hormone pathways is really encouraging.
So yeah, that's the MO news.
Oh plus, my Breast MRI had to be rescheduled to be timed with my cycle...another thing no one told me. Pre- Meno women are apparently ONLY supposed to have BReast MRI's done during Day 5-11 of their menstrual cycle. If not, the higher level of hormones can affect the contrast that's absorbed and result in a less sensitive, less accurate MRI. Arrrrrgh!!! I wish someone would tell us all these things! Oh well, now I know and knowing is half the battle, go GI Joe. LOL. So now I have to wait until Oct 10th to get my scan. Oh "waiting", my old friend here were are again.
"Schedule your MRI for the beginning of your menstrual cycle. If you're premenopausal, the MRI facility may prefer to schedule your MRI at a certain time during your menstrual cycle, around day three to 14. The first day of your menstrual bleeding is day one of your cycle. Let the facility know where you are in your cycle so that optimal timing for the breast MRI can be scheduled."
Anyway, off to take a nap. Am exhausted from the busy week of appts and can finally relax a bit with the MO appt being over at last. Hope you all are having a great day wherever you may be and that this weekend has light and laughter in store for you.
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