February 2012 Chemo
Comments
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hey, all: believe me, i know about quality of life issue, but saw a thread on stopping tamoxifen. some interesting insights on there. http://community.breastcancer.org/forum/78/topic/801560
i worry about you all. i do not want any of you joining my club. not saying keeping taking the stuff, just wanted to send you info that is being posted re options.
love.
susan
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Hey All
First time I've stopped all day. The move went well except I didn't pare down my stuff as much as I thought I did. I moved in to the upper unit of a duplex. Very cute and cosy & clean (very important) and I have my own front porch and garden. Even my own laundry room (well its a stackable off the kitchen LOL) I've know the owner for years and years and he's super nice. Even offered to pick me up some dinner and carried some boxes.
Biggest project of the day was cleaning an empty house. You can sure see all the dustbunnies when a house is empty. But all done now and only (ha) need to unpack. I'm thinking already I either need to get rid of more stuff or get storage.
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MLB, happy for you. Get some rest.
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mlb-congrats on the move! well deserved- sounds like a great place!
maybe-and here's where i'm trying to be positive- once you unpack you will realize that you don't have to "store" or purge anymore! i say that cuz i'm hoping as i unpack i canjustify all of my "stuff"!!!!
so glad that you are now to this new part of your life! enjoy it!
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Lumps and MLB. NOT A CHANCE. nope! LOL You will find you move way too much of everything and think to yourself, I thought I did a good job purging before this move. LOL Um, personal experience, during our first 12 years of marriage we moved 12 times, lived in 4 different states owned 3 houses. lots of moves. lots of boxes. Um, been in this house 27 years now...... UG. Hope I never move from here! LOL
Grit thanks for posting that link. All I can say, SEs aside, I am sticking with all the tx they offer me. I have my mom in mind at all times. They didnt offer her anything once she had the bmx, and they said everything was out. Uh, uh. no way am I going to stop anything they offer. (Well except for Herceptin, LOL the other choice on that one was heart failure and I am not ready to go! LOL and as my doc said, you gotta be alive for the drugs to work! LOL)
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Going to the hospital today and the doctor will tell us what's wrong with DD.
i have my US on pelvis on monday so i hope i get the all clear.
Weather is very windy, not good for my hair. I want to keep the little i have.
Hope everyone is ok and has sunshine.0 -
Good luck today, Ali.
Moonflwr, my onc was saying my latest echo was a bit low (55, they stop herceptin at 50). I asked her if I could fight that decision. My new life goal is to die of a heart attack, so I am cool with the heart going. As I said to someone recently, I'll throw myself in front of a bus before dying of cancer.
A woman who is 12 years out from metastatic colon cancer told me recently that she had asked her doc how they knew if someone was cured of cancer. He said when that person dies of something else. I plan on dying of something else.0 -
Ali - have you had your estrogen level checked? I just had mine done and with only taking DIM my level was very low at 17 and FSH was 78. I've gone from premenopausal to post menopausal in less than a year. Since my level is so low..I am wondering if this is why tamoxifen was so hard for me?....seems to me with a level that low i wonder if I was totally deprived of estrogen while tamoxifen ? Just kinda wondering now - does everyone know their levels?
My MO wants to try something else.but actually did not seem the least bit pushy....however, I'm not so sure I want to get rid of every single bit of estrogen - it can't be too healthy considering how I was feeling.0 -
LOL@grit!
Ali, hope you get it figured out. AEM, haven't a clue what my level is. Onc never took a level so no clue, but then I was post menopausal before Dx.much love.0 -
Boston Marathon 2013. A long awaited day. A day of celebration, being one year after the completion of chemo. I boarded the bus for the starting line about 630 am. The weather looked good, but chilly at the start. Accordingly, I picked up some sweat pants and shirt at Goodwill beforehand, planning to leave them at the starting line, where they will be returned to Goodwill. I looked at the$10 as rent. Good enough to keep me warm while I waited to start. The bus seemed to take forever. Stop and go, and finally arriving at athletes village. Time went quickly there. Porta potty lines were a problem, with everyone hydrating so faithfully. I wore my compression top, (thank you LE) with a light tank over it, and compression knee highs as well. A hat for the anticipated sun, and bright red/orange lightweight racing shoes. Last minute sun screen and vasoline in place, and I took my place in the last corral of the last wave.
I heard the ‘pop’ of the starting gun, but no one was moving. It took several minutes before my group started to move. I slipped out of my sweats and handed them to a volunteer, trusting that they would make their way back to Goodwill. I double checked my phone, which was secure in a zip lock bag in a waist band, and my two Shuffles. I had carefully selected my music so that each song had a cadence of 180 bpm, which is the speed I wanted to run at. (Yes, I remember Marching Band days). I wasn’t taking any chances, because I wanted music, so I brought two shuffles just in case one died. I also brought two headphones. If you get too much moisture on the earphones, they stop working, and it takes hours for them to dry out again. I had 6 fruit roll ups in a pouch on my waist. As I crossed the starting line, cameras flashing, I pressed the start button on my GPS. There were people everywhere, favorite music ringing in the air. The first couple of miles are downhill, so I thought I would run it a little faster. 5 minutes into the run and my IPOD shuffle stopped working. Did I not charge it right? So I switched over to the second one. Mile 1 marker at 9:44. A little too fast, I know I can’t hold that pace, but I also know it’s a downhill, and it should be a little faster than the other miles. Mile 2 was still downhill and I pulled back a little at 10:25. People were still shuffling positions and working out who would run where. It was hard to pass people because there were so many, and I didn’t want to use up my energy weaving in and out. Mile marker 3 was at 10:28. Steady pace, which is what I was looking for. Mile 4 10:26. Now things were a little more level, and kind of a rolling hill stretch. I’m still running a little faster than I had planned, and I’m thinking I may pay for this if I’m not careful. Mile 5 11:34. Mile 6 11:18. Mile 7 11:37. Lots of people. I mostly stayed in the center of the road, it seemed like the surface was a little more even there. Mile 8 11:58, I was hoping to still be hanging onto the 11 minute mile but it was slipping away. Mile 9 11:57. I see a sign on the side of the road, which says ‘slow’. Seriously? I already knew that. And then I see someone holding up a sign which says, ‘Toenails are for sissies’. That brought me a smile, thinking back to running during chemo and having all of my toenails fall off. Before I reach the halfway mark I start to really feel some fatigue in my legs and my feet are hurting. I start to have thoughts of ‘If I’m hurting this much now, how am I ever going to run those hills?’ Then the crowd at Wellesley. All the girls with the ‘kiss me’ signs. I was pretty sure that they didn’t mean that for this sweaty old guy, but their energy helped pass that mile by, and my legs and feet felt a little better by mile 14. I know that the longest downhill is coming up and I start to prepare for it. I’m going to try to pick it up again when I come to it. It starts at about mile 15.5, and I do find a good pace, and manage another 11 minute mile. Next up are the hills. There are 4 hills, the first is at about mile 17. I backed off a little at mile 16, wanting to have strength for the hills. Rounding the corner at the fire station in Newton, its time for the hills. There were people walking on the hills. I was determined to keep running. I was passing bushes and trees like they were standing still. I was able to pass the walkers slowly. I didn’t notice the second hill, I think it was minimal compared with the others. The third hill started at mile 19, and I was still running. Well, kind of running, I was still able to pass the walkers, barely. A brief leveling of the road, a turn and there it was, heartbreak. This is the steepest hill on the marathon. Still determined to keep running, and slowly but steadily passing the walkers, I climbed to the top of heartbreak, mile 21. From here there is a gentle downgrade, although at this point the downhills are uphill. I was surprised to find myself feeling better than I had a few miles before, but my feet were getting pretty sore. As I approached Cleveland circle I heard a siren coming from behind. An ambulance passed by, and then another, lights ablaze and their low frequency siren wasn’t as bad as some of the other sirens. Still running I heard more sirens. This time it was high frequency, piercing sirens. Motorcycle cops, coming from behind. One, two, three….then I lost count. Do they really have to make all that noise? More aid cars, lights flashing, all coming from behind. At some point I overheard a sidewalk policeman on his radio, and I thought I heard him say something about them closing the course early, and at some point I heard some chatter about something happening at the finish line. I still did not know the magnitude of what was happening, and I wondered, ‘Seriously?? Why would they close the course…..I’m not that slow!’ And I don’t have much further to go. I pulled my phone out of its waist pouch, and I keep running. It was a little too bright for me to see the screen, so I autodialed my voicemail. I was surprised to have a dozen urgent messages from family and friends. ‘Where are you?!’ ‘You need to get out of there!’ Messages from across the country about bombs at the finish line. Still running toward the finish line, I try to process all of this. A young man running near me said ‘You’re old enough to be my father, and I can hardly keep up with you’. We paced together for a few minutes, but I lost track of him as I tried to get a couple of calls out. It took several attempts to get a call out. I managed to make contact with my office, and my receptionist said ‘thank goodness you called, the phone is ringing off the hook, all of your patients are calling to see if you are ok.’ I reassured her that I was fine and asked her to pass that on to anyone who called. Passing the 25 mile mark, it starts to sink in…..there is no finish line. I once had a running shirt that said that, but now it has a new meaning. No finish line… Now there are barriers over the roadway and a few volunteers directing us to leave the course. ‘Leave the course? One mile to go, and I am supposed to leave the course? Where am I supposed to go??? I continue to run, now on the streets of Boston, and I have no idea where I am. It doesn’t take long and my GPS is well past the 26.2 miles of the marathon and I am totally lost. I have no idea where I am, I don’t recognize anything or anyone. By now I know that this is a total disaster, and I am lost and alone. There are more sirens, and I am now in a world of chaos. Fortunately, I didn’t have anything to pick up at the finish area. I didn’t know what to do, so I kept running. I have no idea if I’m running toward the finish or away from it. It seemed that the thing to do is move away from danger at this point. Where is that? I saw a city bus, stopped in traffic so I ran to it, and pounded on the closed door. As the door opened, I blurted out, ‘I was running the marathon and they closed the course because of the bomb….I’m from out of town and lost, can you get me to the train?!?’ ‘Climb on’ came the reply. My phone rang again, and someone said, ‘Where are you?’ ‘I have no idea where I am!’ I exclaimed. At that point the bus driver is laughing out loud. ‘Its just the way you said that’ he said. I guess I don’t talk like the locals there. Several minutes later the bus stopped and he pointed me to the train station. A kind lady sensed my situation and walked me to the entrance. As I enter the station, I cant find an attendant anywhere. Its all electronic, and I don’t have any money to buy a ticket. Knowing I have to get on the train, I jump right behind someone going through the electronic gate and manage to get on the train. This is the orange line, and I need the red line. No sooner do we start rolling, than the PA system announces that this train will not be stopping at the stop that connects with the red line, it is closed because of the lock down. The other passengers tell me to get off at Chinatown, and walk to South Station. On the street again, I have no idea where South Station is, and I again explain my plight to three men, who just finished watching the game at the local pub. ‘Come with us….we’ll get you to south station’. Another long walk and I enjoyed making some new friends. As we approached the station, one asked me if I had my wallet. ‘No, I don’t have anything’. The next thing I know these three guys have their wallets out and want to give me money for train/bus or whatever. I tried to decline, thinking I could talk my way onto the train, but they insisted on sending a few dollars with me. As I approached the entrance to the Red Line a security guard waved me over (it helps to be in marathon attire when you wander the streets of Boston) and let me in the security gate. Once on the train, I found myself with children who had been near the finish line at the time of the bombing. We talked and talked. They had so many questions. Finally, back in my room I cleaned up and watched the news….so many questions…
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Wow - I'm speechless...
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My God Adrian. I'm welling up reading this with so many emotions. One being the extreme kindess of strangers in such a hellish situation and the other of sensing how frightening it must have been lost and alone. So so happy though you made it out OK, shaken but OK.
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Oh Adrian -
Tears in my eyes as well. 'Seeing' the course through your eyes, your ears, your feet ... and then the chaos and the kindness of strangers ... Thank you for sharing this with us. Hugs and prayers.
Diana0 -
amazing read!!!
Lump is normal but lining of Uterus is 6.3 mm so need to see gynecologist. (not had a period for a year)
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Ali-
Great to hear that the lump is normal.
Hope everything with lining is too. Will you be meeting with the gyn soon?
Hugs across the Atlantic.
Diana0 -
Not sure how long to wait. Being on tamoxifen is a worry.
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adrian; wow.
thank you for writing so beautifully about this horrendous experience! those of us who don't run can't comprehend some of it and those who have never been exposed to such danger- well...you all know what i'm trying to express, i hope.
personal question for you- did you do any time in the armed forces? if so, were you already a dr? one dr interviewed likened the scene at the finish line to wartime and he had not served so could only imagine.
ok- now the tackiest of questions- what happens to your "official time" in the race? sorry-had to ask!i was following your time online and was very impressed with the first section- my 33 year old son doesn't do a whole ton better and he hasn't gone thru chemo!
again...wow. really can't grasp better words.
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Adrian,
How I wish I had PM'ed you with a contact number prior to the run, just in case. But who could have predicted this would happen? It was insane, and spending Friday in lockdown was equally so. I am so glad that you were able to make your way to safety, and saddened that you didn't get to officially finish.
I'm also laughing at your thought that you don't talk like the locals, because frankly, NOBODY else talks like the locals. (Thank goodness!)
Ali, very happy to hear the lump was benign. I agree that the uterine risk with tamoxifen is worrisome, but for me at least (ER 85%) the benefits far outweigh the negatives. When I first started taking it, my onc really read me the riot act about how important it was to stay on tamoxifen. She said it would have nearly as big an effect as chemo for reducing the risk of recurrence --but again, that was for my particular case and tumor profiles vary so much its not the same for everybody.
I have also noticed that I have worse SEs with tamoxifen from one manufacturer than with another, and am going to speak with the pharmacy to see if I can get the one particular mfturer's pills from now on.
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my goodness! we dropped to the bottom of page tow- almost to page three--folks....c'mon ...reach out and shout !
i'm good- i guess...i really do have lots to say but taking short lunch break at work and can't think straight!our dept added ppl and we're training!
sending hugs and prayers to you all!
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Dropped to the bottom of page two? Headed to page three? Perish the thought
Since I last checked in with the list of my upcoming doctor appointments ...
- had that revision surgery (4/5) and my reconstruction surgeon removed a portion of the skin - so it's stages for me with this. I'm okay with that for a better outcome (eventually a thin line). I saw him last Wednesday. He decided that I needed to wait to have the stitches removed and not cleared to run. I'm glad he's being conservative, but didn't think I'd be off the running for so long. Stitches to come out this Friday.- saw my new gynecologist ... like her a lot! Had had some discomfort (like premenstrual from the past) on one side and when she did the pelvic - PAIN. She wanted to rule things out so had me come back last Wednesday for an ultrasound. I'd never had an internal ultrasound and hope to not have to repeat that experience. Fortunately everything looked good - Doc came in and looked too. Uterine lining thin. She called over for the results of my Pap and it was 'negative' in a good way. Had tested my Vitamin D level and said it was good - so whatever I'm doing - keep doing. I don't take supplements - but I might start Calcium and Vitamin D - but not a huge amount as I usually get the 1200 of Calcium in my food/drink and the Vitamin D from being outside and in my food/drink.
- saw my RO last Wednesday too and she thought everything looked good. I did talk to her about those pains I've been having - back and then jaw (especially).She spent time pushing around .... but also thought that since I am having labs on the first and seeing my MO, that I could see if the pains persist and revisit each issue with MO.
So .... tomorrow I see my PCP ... scheduled 6 months ago. I think I'm about doctored out (LOL). However .... I was taking inventory of my feet a couple weeks ago and noticed that they did not look like one another. (Remember that Sesame Street song ... "One of these things is not like the other") Husband said it looked like a bunion. So I start researching online and sure enough ... my self-diagnosis right now from some reputable sites like Mayo and Harvard MD and Runner's World ... is that I have a bunion on my right and possible bunionettes (who even knew there were such things?) on both feet. UGH. So tomorrow I will ask my PCP about that and get a referral to see a specialist so that I can know best what to do ... I'm hoping the night splint thingy might work. YO ADRIAN!!! Whaddya think?
How's everyone else doing?
Diana
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Adrian, I was worried about you, I went to the exercise thread and saw two others running that race too. Now I was worried about three. I had been tracking.g you and knew you had to be close to the finish line. I was so grateful you were alright. I can't imagine how you felt, and you were probably pretty wiped from the marathon itself, then all the other stuff! I am thankful for the good that was shown in such a bad situation, and realize that Boston Strong is true.
Ali, I am happy for you that the news was good. yay!
Dltnhm, I understand about being doctored out. It's hard to call and make those regular Dr apt! I just had my gyn one too. No pain, but that made me wonder if the arimidex is working. D*mn, we worry about the weirdest sh*t!
Much love to all.0 -
Now we can't drop to the bottom of the boards! LOL! Settling in to my new place and routine. Weird but cool cooking for 1. I get to have whatever I feel like. I just completed my first Meatless Monday. Hit a local fruit and veg shop for some organic produce, only spent $15 so not so bad. Loaded up the freezer on some fish from a friend up north that farms trout, good stuff, he even supplies Costco up here. $5 a pound, can't beat that. Bought a weigh scale too, yikes but at least I know the number now LOL! If I were to lose 15 pounds I'd practically have a new wardrobe of pants!
I'm going to splash out and get my hair, eyebrows, mani pedi this weekend (its a pay week) Been ages since I treated myself to anything like that.
Its time I was good to myself (within reason of course)
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MLB, you go girl!
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so great to see my peeps!!!
work is crazy - 70* weather this week- lovin it!
i take new kitty to get declawed thursday
payday tomorrow- it's gone! rent -car pay- declaws --so MLB-enjoy!!!$5.99 hair cut tonite at great clips- top and 1 section in teh back are growing too fast- i really think i am going to eventually let my hair go long again- i think i look old-wish i could post my newer pic
i have plantars warts on my left foot-bought meds but haven't starte dto tx- dunno what i'm waiting for...
i see MO and RO in a few weeks..
back to work- hugs to all!
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Hi to all and hope your all doing well,
My daughter is up and down but we are on a good roll at the moment. Weekend away was good and the car got to a speed of 178 mph on the track. ( great fun)
DH sister is having a nervous breakdown so something else to worry about.
My sister called me today after 6 months and had a good chat, no heard from my mad mother so happy about that.
Got an apt for gynaecology next week, I would be happy to have a hysterectomy.
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Good grief Ali, don't wish for a hysterectomy. You've been through enough. I'm so relieved that the lump was not of concern. Crossing my fingers that the gyn appointment goes well.
Firstcall, WOW. You are a great writer. I almost felt like I was there with you. I am so glad that you are safe.
Sorry I have not been on in so long. I have been busy wrapping up the semester. I graduate May 17th - I'm so excited! We're going to have a big party on the 25th to celebrate being done with school and with cancer. I'm so happy! The last two weekends, I got all of my flower beds weeded. That meant so much to me. I was on chemo all last spring and summer so I did not get anything weeded, and it broke my heart that the beds were such a mess. I feel like the world's been set right now. This weekend's goal: big time spring cleaning. Between being busy with treatments and school, I have not done much more than surface cleaning for over a year. Do you all feel like life is slowly getting back on track?
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Lumps, sounds like you are pretty busy!
MLB, hope you are enjoying the new place Ali, so happy things are on the good side for you now.
Christina, CONGRATULATIONS!!!! man its good to hear good news!
To all, Much Love!0 -
Christine
Enjoy your big party! Well deserved I say
Moonflwer
I'm enjoying the new place but it struck me yesterday that geez I live alone. I say this because I took a tumble down the stairs carrying a big bag of garbage in my high heel sandals LOL!. Fortunatly for me I have all of my broken down boxes on the landing and if it weren't for them, I would have crashed head first into the wall!! Totally broke my fall. My shoes are now at the botttom of the stairs where they will remain!! Only injury is a skinned elbow.
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MLB- wow-a fall scares me- sometimes i have to think more than twice when i do some activities ...in case!
are you enjoying the living alone otherwise?
we're at the bottom of the page again folks!
got my hair cut again- left side growing much more quickly than the right- kicky now! we are putting "taffy" on it to spike it up a bit....cut the grass thursday nite, shopped friday nite ;put my BBQ grill together saturday (didn't USE it yet!) and sunday put my "cubes" -furniture to hold cube shaped boxes or whatever...together- slowly cleaning out the second bedroom-almost ready to put a bed in there for sleepovers ...oh-friday picked up teh cat from the vets- she is still in hiding mode but this morning i finally got some cuddling time before i had to come to work-
yesterday i tried to nap on my papasan in the back porch- glorious lite breeze -just awesome!
still trng at work...
feeling good- finally WANTING to do things again...limited by hours available and my emotionally needy sweetie/roomie- who is declinging quickly but stubborn!
anyhow- nothing new-=hope to hear from everyone once in a while
hugs and prayers
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Hey everyone ... at the bottom of the page - no, that simply will not do
Moonflower - you always cheer me up with your comments and individual responses to everyone! And your smile on your pic is infectitious!
MLB - Falling down - good gracious woman ---definitely leave those high heels down at the bottom of the stairs! OUCH! Hope you feel better soon. Did you do your special things this past weekend - hair, mani/pedi and what not? So good for you to be able to treat yourself to those!
Ali - What fun racing must have been for you! I think I'm not quite that adventuresome, but my husband would love that. Glad your daughter is on an up right now. Sorry about the increasing difficulty for your sister. (Don't mean to understate that - just grasping at straws here.) I hope your gyne appointment goes well and you get some answers and they don't find anything that's not suppsed to be there.
Christina - Grad-uation .... grad-uation ... graduation, graduation, .... grad - u -a,a,a, -tion!!!! (Sung to the Hallelujah Chorus)! We're all so proud of you for your great accomplishment!!! Yowsa you did it!!! I'm so glad you will be able to have a celebration for all your hard work!
Lumpy - I am in awe of all you accomplish. I think you are like the energizer bunny. Convicts me of how little I do and how much I should be doing - and I have no excuses now except the funk that I get in questionning my abilities to rejoin the work force after soooo many years. Sorry your husband is not doing well. I know you are taking care of him too!
PCP said my bunion is a bunion but no one would do anything about it right now. (I love him and he's a really great doc, but on this point I disagree. I mean - they might not 'do' anything, but an orthopaedist might better analyze what is going on with my toes to make certain they are not all going whacko out of alignment requiring something more extensive down the road. He did check out my walking gait (no, he's not a pervert - just thorough) and didn't notice anything off. Did get some tips from some gals on the running thread so after I get my new shoes (much needed) and put some miles running (cleared to do so this coming weekend), I'll monitor how this all feels and get back with him.
Tomorrow is my 3 month with my MO. Love my front desk ladies over there and hope to see my chemo nurse too. She usually comes from the treatment area to see me when I'm there. I'll go over those different pains I've had because it's important that it's out there and see what she says. And let's hope for steady numbers from my labs last week, right?
Drew graduates on Saturday in Colorado. Did I tell you all that already? So time for a celebration in our family too! He turns 23 on Friday and graduates on Saturday. I'll have all my boys together for the weekend and for Mother's Day
plus Monday to just relax and enjoy being. Bonus!!!Love to you all!!! I've been thinking that we need to figure out a way to 'see' one another beyond our thread. I'm not certain what that would look like - but I know real hugs are definitely something we should share along with laughter and tears in one another's presence. Somehow we should make that happen.
VIRTUAL HUGS across the miles!!!
xo
Diana
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