CRAZY TOWN WAITING ROOM - TESTS coming up? All Stages Welcome.
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Shorfi, I am so very sorry to hear about your SIL's husband, and so sorry for your family's loss. So difficult.
xoxox
Octogirl
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Hi, ChiSandy, you are a very smart lady! Thank you for thinking of me. There are so many girls here who are suffering with tremendous grace. Dear Heart, I shouldn't be on any antidepressants. I was in great shape before going on T. Doctors thought I was depressed for decades but I had a serious anxiety disorder that manifested as depression. Anxiety has many faces. I take anxiety meds but as few pills as I can stand. Shrink wrote Major Depression - Single Episode on my Celexa prescription. I turn into a killer lion on the SSNIs. The norepinephrine makes me truly evil. I already have an aggressive streak or I couldn't have survived bout 18 years climbing the ladder in the D.C. area. Only thing that ever tempered me and my aggressive personality was high dose Naltrexone, an endorphin agonist developed to treat alcoholics. Go figure.
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Hi again Crazies...
I don't have a lot of time to answer everyone's posts, but I will take a stab at doing so. Work is busy here as everyone tries to get stuff done before we shut down for the year, and I am just trying to be productive this week in case rads takes my energy next week. Oh well, it is Friday, and I am looking forward to a quiet weekend cleaning my house, making a Costco run and putting up a tree for hubby. Exciting times in a small town.
Katy: I hope you are staying warm and dry. The storm was still cold by the time it got down here, but otherwise sort of fizzled out. Not a lot of rain, though I hear there was a lot of snow in the mountains, which counts for a lot.
Sula: Congrats on the kits selling so well! I knew they would! I loved your wedding pic. and yes, ducks are not something you see on Ocean Beach. Neither hubby nor I had ever seen any there either that we could recall, though I haven't been as often as you. I grew up in the East Bay, so spent less time on the west side of SF, but still, no ducks on the beach until that day. Hubby had lived in SF for about 18 years when I met him; he lived in Bernal Heights, but he did head over to Ocean Beach often for dog walks.
Sandy: Bet you are so ready to get on the plane and get outta here!
Shorfi, sending more hugs!
QMC, hope you are feeling less shaky!
Rain, I know that good feeling of getting wrapped up in work. So much better than getting wrapped for LE, I am sure. Sadly, it doesn't seem to happen nearly often enough these days!
Poppy: Oh no! Feel better soon…glad to see you popping up again though, haha.
Waving to all of you, Gaia, Chevy, Ducky, DF, SDB, Cubbie, and I am sure many more that I am missing.
My sister had a lx today and seems to be doing well. Fingers crossed for a clear path report!
As for my own time in CT: yes, the holiday stress is getting to me. But the other reason I am crying a bit at night and holding onto Gabe the Teddy Bear: I am convinced the hair is never coming back. Still no sign of activity on top where I am totally bald. Where is that fuzz everyone said would come first? The hair at the nape is growing a bit, but it never really went away….anyway,I know it may seem small compared to other's issues , but I really wasn't expecting this level of anxiety or that I'd be this shiny bald almost 5 weeks PFC. Regretting not going for cold capping even though at the time I thought it would be more hassle than I wanted. Then today, I was having lunch with some work friends, and one friend, a Brit who is applying for US citizenship, was talking about whether he should list his hair color on the application as brown or be honest and say gray. I held my tongue by wanted to blurt out that I would kill for his thick gray hair! Like I say, possibly petty, but I feel petty today. and anyway, I loved my hair and it isn't a small thing to me! I feel so powerless over this. Fuck cancer. Fuckity, fuckity, fuck. Since I say that to myself ten times a day I might as well say it out loud to the rest of you.
Sigh. Oh well, It's Friday. I hope all have a better weekend!
Hugs,
Octogirl
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octo, hair is a primary sexual trait. Hair is a cultural symbol. Hair is a defining beauty thing. Hair is NOT petty or insignificant. I have lots of hair, and I would be devastated to lose it. So, hold onto your bear and cry for your hair. Hair gows slower in winter than spring and summer. Maybe it is waiting quietly for the right weather to spring forth.
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Octo, I didn't have any hair 5 weeks post chemo. It's like one day none, the next day you look moldy, and it's all good from there. Do you eat meat and take biotin? Don't panic yet. It will grow. 😊
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Octo: that was a pretty fair stab!
Going in this afternoon to (I hope) have the post-surgery gauze removed; that'll be more comfortable, though I expect I'll still look like I lost the fight underneath. Now I'm really REALLY glad I thought to get a couple of scooshy bras from Target the day after we'd scheduled this surgery!
Edit: bandaging off, but found out that a) I'm not allowed to shower for another 48 hours and b) i have to wear sports/compressive bras for 4-6 weeks. Gee, woulda been nice to know that before surgery!
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I finally wrote the MO an email last night about the extensive T side effects. Then, I called the clinic and nicely bitched to the nurse that nobody had responded with help to my phone call about the horrendous side effects of the Tamoxifen. Within a half hour, I got an email from the MO saying to stop the Tamoxifen. I had already stopped it. She said to get to the ER if I have intolerable pain, difficulty breathing, or leg swelling.
The last straw for me, wonderful crazies, was a headache that did not resolve with 1000 mg of acetaminophen. And, loud ringing in my ear that seems to be diminishing somewhat after going off the T two nights ago. I backslid and ate a huge Hershey bar when I am supposed to be shedding pounds. Oh well, maybe I will get with the program again soon. I have stopped punishing myself for things like eating too much chocolate. It just leads to guilt and binge eating.
Not comforting to get instructions from the MO in the event of a medical emergency from Tamoxifen, but I am sure it is necessary information that she had to convey.
I am tired. Girls just wanna have fun? Where has all the fun gone?
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goodness, much has happened since last posting for me, shingles seem to be repent and so sorry for all having that to deal with, had that once and hope not to have it again
got movie at the local library so gotta go and hope all have a better afternoon
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((Shorfi)) What a rough time for you and your family.
Octo, don't worry about the hair, it is still early for it to be showing. I've had relatives go through chemotherapy, and it seems like it takes forever for the hair to start to get started again. Decision is onto something, it probably doesn't help that it is winter and your body is in a slow hair growth cycle anyway. Glad your sister's surgery went well. Keep us posted.
Decision, glad your MO is on the same page with you about the Tamoxifen.
You know how they say to take things one day at a time? Right now I am taking it 15 minutes at a time!
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Cubbie- yes! 15 minute increments. I get that!
Chi, Shorfi, Octo, Beppy, Rainny, Sula, and everyone, thank you for your ongoing support.
I had a shrink appt yesterday and confirmed that I really can't risk any kind of anti depressant on T or an AI, not because of endocrine pathways, but just too risky for my bipolar case, which is brittle, resistant to many meds, while at the same time prone to an excess of side effects. He warned me he was going to say something I might find shocking, then blew me away. He thinks I should seriously consider ECT therapy. We had talked about it once before, years ago, but I somehow found reasonable stability in the interim. I promised him I'd do some research on my own. I know it sounds really scary. I think whether I'd be willing to do it or not is a moot point, since the nearest place I can see that does it is in Portland, 5-6 hours away, and I have doubts my insurance will cover it. I know it's not like the old movies portray it, and have read that it's quite effective for those not successfull on meds.
I have had several years since I've been this unstable for a long period of time. Usually we can tweak something and I stabilize. He did agree that we should wait to see if a month off Tamoxifen helps bring me back up to an acceptable mood level.
I hate this.
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oh Katy, hope you and your docs can work out a plan, you know all here will be thinking about you
well, movie was a holiday tear jerker which I think we all have seen at some point but this was a monthly deal and a pal and I just go to what ever they show
need to do something special for dinner, my sister sent flavored olive oil and vinegar so need to figure a plan
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Katy: (sympathetic ear)
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Katy, so sorry about the bi-polar and that you are feeling so bad. Right before I got full disability I had one-half session of ECT because I was feeling awful. It was impossible for me because I have too many health problems and like you I had to travel but not as far. I went on HRT soon after and that seemed to turn a switch in my brain
Now, I am going to say something shocking. Maybe you have an underlying disorder that only appears to be depression. Low vitamin D levels as determined by a blood test and thyroid problems that are thoroughly ruled out are two possible culprits. My vitamin D levels were on the low end, and vitamin D supplements prescribed by the doctor to bring up my levels have brought me out of the dumps several times.
You need someone who really knows what he is doing to test for thyroid as there is a special test that is very sensitive. My mother's thyroid was completely knocked out by radiation therapy. Many women our age have our vitamin B12 levels tested by a sympathetic physician and if the levels are not too high we have shots at the doctor's office or we give ourselves shots. When one of my doctors saw me struggling with word recall and memory problems, he offered to prescribe the vitamin B12 vials so I could give myself shots twice a month. My family doctor had indignantly refused my request for Vitamin B12 vials, but I went to another doctor who said many people our age are beating down his door for B12 shots, and he said they make older people feel better, improve memory function, and increase energy levels. That doctor joked that he was giving shots of a vitamin, not heroin! B12 levels have to be monitored now and then to make sure they don't get too high but that is not a big deal. So, I easily found two doctors who understood why I wanted to take B12 shots. They help!
You might consider Transcranial Magnetic Stimulation instead of electro shock if your insurance will cover it. I believe it is being provided under the trade name NeuroStar, but I will try to verify.
Also, some shrinks are willing to prescribe nervous system stimulents to patients undergoing medical therapies that exhaust and depress them. I have ADD so I have taken CNS meds such as Adderall and Ritalin for 25 years. They can be used off label to fight fatigue and depression if you can ask around and find a kind psychiatrist.
I will be sending out a prayer to ask that you receive answers and guidance.
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sitting at the MOs turns out they were cutting me some slack by not giving me my final Herceptin... No WAY!! I am getting all the H they can give me!!!! So I'm setting my final treatment for after the new year then port removal! I don't mind waiting this is too important to me, you guys don't think I'm nuts do you????? I think everybody here thinks I'mCrazy
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Sula, given your history and how far you have gone on this treatment, heck do the final one
best wishes
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Sula, isn't everyone here crazy? My vote which counts for very little is that you have the right idea in finishing the full course of therapy since you are able to tolerate Herceptin. Best wishes and Merry XMAS.
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Sula- agreeing with the others. But you know I'm crazy.
Decision- thanks for all the good suggestions. I have been recently tested thoroughly for thyroid and D. D was low and i started on a course, along with K, which apparently goes hand in hand. I'll ask about the B next week since i have a pcp appt who prescribed the D. And we will see if my D has improved. As an aside, it will be the first early peak at whether the elevations of liver enzymes are coming down. I'm hoping maybe the bone pain will resolve off the Tamox. It's a long shot, but the pain started after I went on it in August
I am doing, as I have done before, research on the ECT. Aside from insurance issues and the geography problem, it only works 50% of the time and has only short term benefits.
I'm starting to think about ways I might be able to reframe my whole situation. I am laying massive guilt on myself for a lot of things I think I SHOULD be doing. When I don't don't do them I feel it's because I'm down/depressed and beat myself up. Then I really feel down. Suicidal at times.
Perhaps somehow I have to get to a place, very soon, where I accept where and who I am now, at this moment. Less mobile, less vibrant at times. Go back to square one. Walking to the mailbox instead of failing to walk a mile if it hurts, makes me uncomfortable, or makes the LE swell up. Then beating myself up for the excess weight, estrogen hiding body fat, and general immobility.
I have to find some small hopes and dreams again. Right now and for awhile, I even felt anxious and nervous when I woke up to pee at night because I knew there were studies of light affecting the efficacy of Tamox. I've made myself a nervous wreck
I need to think on this and take an inventory of my soul and my heart.
Another dumbass journey here I come!
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Trying to be grateful despite feeling shitty all day. Off the Tamoxifen and off the antidepressants, yeah. Roof over my head, a small but loving family, kind church members who built my mother Anne (Ani) a long, fairly gently sloping ramp, food to eat, good doctors. I have been having flashbacks about people and places in my life. Remember the Beatles ballad, "In my life, I have loved them all." So many friends who have already passed away. So many losses. And, many advantages and good fortune despite being disabled now and on a limited income. Maybe someone will come up with a great treatment from fibromyalgia before I am ancient. Boo, hoo. Gratitude is very important in maintaining mental health. Let me count my blessings. Good hair, new shoes, a huge garden, several people who love me even if they don't really understand me, the girls of Crazy Town, a huge pile of glossy unread magazines, a mother still living and fighting Mets at 85, a room full of books collected and saved to read one day, paintings to put on the wall when I feel okay, being able to pee (my neighbor, younger than me is on dialysis three times a week), love of beauty and and nature, faith, a wonderful father, now deceased, low blood pressure. Okay, so that's a start.
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very nice list DF- I need to make one of those too
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Trying to be grateful despite feeling shitty all day. Off the Tamoxifen and off the antidepressants, yeah. Roof over my head, a small but loving family, kind church members who built my mother Anne (Ani) a long, fairly gently sloping ramp, food to eat, good doctors. I have been having flashbacks about people and places in my life. Remember the Beatles ballad, "In my life, I have loved them all." So many friends who have already passed away. So many losses. And, many advantages and good fortune despite being disabled now and on a limited income. Maybe someone will come up with a great treatment from fibromyalgia before I am ancient. Boo, hoo. Gratitude is very important in maintaining mental health. Let me count my blessings. Good hair, new shoes, a huge garden, several people who love me even if they don't really understand me, the girls of Crazy Town, a huge pile of glossy unread magazines, a mother still living and fighting Mets at 85, a room full of books collected and saved to read one day, paintings to put on the wall when I feel okay, being able to pee (my neighbor, younger than me is on dialysis three times a week), love of beauty and and nature, faith, a wonderful father, now deceased, low blood pressure. Okay, so that's a start.
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Decision.... you really are a great story-teller.... I admire your perseverance...... I am also grateful..... even when things hurt all over, I find a lot to be thankful that I can still work in my garden, clean out the garage, even paint the fencing, and the house when the weather is nice....
If I just keep "going" I'll be okay.... thanks for the incentive!
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katy, I have struggled with diminished capacities since 2003. I had the good fortune to spend time with one of my doctors and his now ex-wife, a most exquisite woman. They helped me so much to learn how to be less harsh on myself. The doc told me his hopes for me were basic functionality and a few minutes of joy now and then. The man was my home teacher from church. It has been a terrible battle to accept my limitations as I was at one time a successful, respected professional who was nicely compensated. I had gorgeous clothes and shoes. I dropped $350 in Georgetown to have my hair cut and colored by one of the best colorists in Washington, D.C.
I fell very far after I got sick. I was perilously close to ending up on the streets.
The only way I was able to learn to cope was to find a spiritual community and try to learn as much as possible about thinking about life's gifts in a very different way than I did before. It is not always easy. I belong to a strict church, and I don't meet many people who have a deep understanding of my artistic nature. However, I have met people who love me and who infuse me with a sense of hope. It is strictly one day at a time, and I have to take pleasure in what I can do, not what I fail to do. I can always try to do more when I feel like it.
Love yourself, katy. Love the days you have. Love saying fuckitty when you have a shitty day. Honor yourself for what you stand for. Accept and rejoice in the strength you share with others. Know that God loves you as an imperfect human being, if you believe in God. If you don't, then know you are an integral part of the universal energy flow. Beating up on yourself harms you. You would never beat up on anyone else that way. Treat yourself the way you treat other people, Little Sister.
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Te, he, Chevyboy, I was a Washington, D.C. spin doctor. For years, I created narratives for organizations. I also have an advanced degree in Creative Writing and another advanced degree in English Literature. Our lives are often guided by the stories we create out of what happens to us. I read tons of fairy tales as a child. My life was nearly a fairy tale, but now, it is sometimes pain and numbing labor. Still, there is the garden I made, very beautiful and soothing. I built a massive garden 20 minutes at a time.
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DF- our pasts are frighteningly similar. All of it.
How beautifully put, what you just said. Thank you. I know I have a lot of work to do. Most of us do, but it's my job to work on me. I will endeavor to love myself better.
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God and his son Jesus Christ worked on me, katy. The Holy Spirit guides me. I don't do the work. They do. That is what took me out of my pit of suffering. We are all different, though. The miracle of change began when I started to pray. It didn't happen all at once. It came slowly, but I was transformed.
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Ah My Crazies
I have been reading everyday and thinking of all of you. For some reason feeling stunted in posting- I hate the thought of posting and missing acknowledging people and we seem to be busier than ever here in CT.
Octo I hope you will listen to your gut and heart and make a choice that nurtures you for the holiday and navigating your step mom. It's so important to advocate for ourselves. Saying no is healthy. and re your hair, your sadness is so natural and NOT SMALL. It's a loss, you are grieving a loss and losses make us vulnerable. I'm glad Gabe is a steady companion
Queen sounds like surgery went well, but yes would have been good to know about need to be compressed for several weeks!
DF- Very thoughtful posts, especially your words to KAty and of course you sharing your story. You certainly have had a 'big life' and by that I mean one that includes the harmonics of life in all its messy beauty
Katy- you my dear loving friend. Be gentle. there is no medal of honor for pushing yourself. Go inside and breathe. Yes I think for many the first 'job'/step is to recalibrate our expectations. Sleep is good, rest is good. Give your body mind and heart time to adjust. One year is not such a long time to digest every piece of what you have experienced..... holding you close.
Big Life- on that note it's funny because Seth and I tangled this morning a bit- he just started a new job- big lots of things that need repair, so big stress, then navigating what's on our plate with my 'new normal' then planning a celebration for our union. Well he was freaking a bit and just sat there and said YES It is a BIG LIFE. anyway I digress
Proud Sounds like the dentist was good
Sula- that is so weird about them trying to skip the last treatment..... actually a little disturbing. Good that you insisted to finish it out.
Shorfi- So much in your world too- so sorry for that sudden loss and I hope your scan is just the stenosis.... I sense it is.
Slow has your head cold become more entrenched or has it passed? Hope you are getting the rest and self care you need.
Ducky what's shaking these days?
Good to see you dropping in Chevy
Rose you are getting closer to the Troll leaving; how are you?
Edited to say: I love the tattoo intentions Robin. Lucy - the duck- awesome.
I had a lovely lunch with Rainny today- It was such a pleasure to meet and connect in person. Next time your hood! And Octo another meeting when you are in town. West coast ladies i'll be thinking about a visit once we get through the holidays.
It's the new moon ladies, plant some good seed- thoughts-intentions for yourself tonight. I'm off to dreamland soon
love to all
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Hello wonderful crazies,
So much has gone by, hugs to all who need them, welcome decision, beautiful words above.
I promise once I get to the other side of my surgery to be a better support to others here. At the moment I am trying not to be utterly overwhelmed. I hate it because I am a control freak and like to hold it all together, (or seem like I do) but with surgery looming large this coming Wednesday, and my dearest sweetest dog has taken a turn for the worst. She is 13+ years old but has been doing really well until this week. Yesterday was my last working day (crazy in its own way) and my DH called mid day to let me know she was not doing well. When I got home I agreed... There's a look in their eyes ..it helps you know 'when'.. So needless to say the dam broke. Everything I've been trying to hold together came tumbling down. I guess it needed to. I just can't imagine going into this surgery with a broken heart. I don't have children. I have furry and feathered ones. So this really hits me hard. Any of you who are animal lovers will understand.
With all that said she rallied this morning - so maybe we have more time...
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(((((Notagain))))) she must be sensing your pain too.
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Oh, NotAgain, not your furchild too!
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Notagain- I can only imagine your worry and pain. Sending good thoughts for you and your furry partner. I'm so sorry but hoping for the best.
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