Chemo May 2013
Comments
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Lisa...that's what I'm praying for!
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Hey Ladies,
I went back this morning and started reading some of these posts from the beginning of page 1 - we have come so far...
So surgery tomorrow. I think I'm getting anxious. I woke up at 3am and couldn't sleep again. My stomach hurt so bad
I started worrying that I had a burst appendix or something...and then I thought about my Hercepten infusion today and started to worry if it's okay to get surgery the next day...And with DH being gone all day Friday....arghh.....
My ex-boyfriend has offered to buy me a ticket to go see Pippin with him if I come to NYC. I know that sounds wierd, but we have obviously not been together for 16 years and I'm pretty sure he's gay now! So I'm SOO tempted but the logistics of it all are overwhelming me (I would fly into NY and probably stay with my dad in NJ but have to get into NYC on Sat for the show) - and I have both my boy's birthdays in October (we would go in October)...so i think I"m going to bail
Even though I could REALLY use a fun weekend and i haven't been anywhere all year long.....Okay - off to the grind again...last day for a few days I guess!!!
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Kate...go!
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Agreed you should go to NY Kate. Go see your Dad and enjoy a night out with an old friend!
Lisa excellent news for you!!!
I got 100cc more in my TE yesterday and he says 100cc more in two weeks, then we should be good to schedule surgery. I'm guessing surgery the first part of October then heal from that and do radiation. Another day, another step forward.
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Lisa, Great news!! So glad it’s a cyst but sorry y had to go through so much anxiety.
Pat, I just started Effexor for hot flashes, my MO said it can take weeks before symptoms improve. Sorry, no workaholics here. I tried to keep up with housekeeping chores but I find I get tired and my DH works to much so I try not to ask him to do more when he gets home.
Kate, Your in my thoughts, all my best for a successful surgery tomorrow.
Feeling flagged from the last Taxol. My legs are so weak and I have some finger pain but I’m sure it will pass. It seems like the cumulative doses of chemo are lasting weeks now. I hope to get some energy back before radiation.
If you have a port did your MO tell you when they’ll remove it? Does the RO use it for blood work? Mine is starting to annoy me and I wondering how long I’ll need it. It’s great but if I don’t need it, I will ask to get it pulled.
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Robin good question about the port and needing it for rads. I have no idea, haven't got that far with the radiologist. I won't actually start rads until most likely end of October. My plastic surgeon is going to take my port out while I am under with my last surgery in December after rads. I am so glad since they tried to kill me putting it in while I was wide awake for an hour and a half! OMG!
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My port will be in for a while for blood work etc. Per mo's request. I don't mind since mostly I forget its there. Of course they couldn't get a blood draw last time I went for bloodwork so maybe it is meeting an early demise.
Kate I agree with Patty....go go go. Will be thinking of you tomorrow. When you are up to it let us know how it goes.
Kobrien thinking of you too. Hoping you ultra sound turns out as well as mine did.
Lisa -
Hi All.
My surgeon offered to remove my port after chemo was finished and before I started rads. Alas....I am getting Herceptin until next May so I couldn't take him up on his offer. I'd say if you don't mind having blood drawn the old fashion way (from your arm) - just ask to get it out of there!
Annie
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Lisa... Yay on the good news!
Kobrien.... Still thinking good thoughts for you!
Kate.... Go to NY - for sure! & good luck tomorrow!
Robin.... I hope you have a swift recovery after you last taxol!
About the sex.... Not for a while here.... We had a few times in the beginning, but I think I'm too ugly for him right now..
About the port, I was told that they aren't doing a contrast for my CT for rads, so I wouldn't need my picc line anyway... Thank goodness since the darn thing had to come out early.
I'm feeling pretty close to normal... Well, other than being tired & bald & bitter about both. I'm not gonna lie. I'm scared about Thursday & the fact that I look like a dude & my hubby doesn't see ME anymore... I'm sad a lot & don't know why. I should be better now knowing that rads won't be as bad as chemo. And then I feel like a baby knowing that some of you have more surgeries & etc to endure.
I hope everyone is feeling as well as they can tonight!
Lorrie -
Lorrie,
Bitch away, you speak what a lot of us feel.
This journey sucks. Wether it is "just a surgery", or added chemo, or added rads etc.
we have each learned so much do to the sharing , bitching, crying etc here.
I think I have the opposite problem of yours regarding sex. I AM feeling so ugly right now. And what, I'm supposed to fake things because the boobs don't do what they used to. It's not easy to get in the mood when all I am thinking of is "what WAS".
Lorrie, I wish you all the best for rads. Don't forget that every treatment period adds an equal amount of recovery time with chemo.. I don't know what "the rules" are with rads....but find out! And then whip out a calendar and mark off your projected "feel better date".
I was playing with my numbers in my head...and then realized I was doing it wrong. I said July 8 was end of chemo, but forgot to factor in the extra two weeks post July 8....so I was projecting recovery wrong. Doesn't matter too much, I will be going into my next surgery which will add forever on recovery., lol
Here is my "joke of the day"
Patient: It's been one month since my last visit and I still feel miserable.
Doctor: Did you follow the instructions on the medicine I gave you?
Patient: I sure did - the bottle said 'keep tightly closed.'
Pat -
Hey guys...
Just sitting at home waiting to leave for the plastic surgeon for my markings...
I'm tired - I want my morning coffee
Lorrie - I can relate. I feel fat and ugly - no eyebrows or eyelashes doesn't help. My new boss spends most of the day making me feel stupid which does nothing for my self esteem. I feel like my kids even look down on me now because I'm so pathetic. There are so very few moments of "fun" in my life and I used to be so involved in so many things...
sigh....
I would quite like to get my port removed too as it sticks out so much and sometimes it throbs near my neck, but I have hercepten til May. They can't even use the port today because it's too close to the surgery site so they have to pop a vein on the right arm which is my sucky one.
Okay - a morning with no coffee makes me miserable so I'm signing off!
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Kate, I drank your coffee for you. If it helps, it didn't taste so good today!
Good Luck!
Pat -
9/11
It's been 10 years and I still remember exactly where I was when I heart the news....
I was in my car on my way to work. At first i thought it was a joke on the radio....I still remember the intersection where I was sitting at a red light... When I got to work, I ran into the building to find everyone surrounded around a TV watching the horror unfold.....
What a horrible day it was for NY & the US.... & it doesn't seem like it was that long ago.. -
Haha... I meant 12 years
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Kate all my best for you today! I remeber after surgery all I wanted was coffee and all I could get was ice cubes and a caffee headache.f
One of the things frustrating me is the expectation from others that now that I’m done with Chemo I’ll soon back to my old routines. I have never felt weaker, I get out of breath walking up and down the stairs and my legs feel like they are going to give out. I want to get back into an old routine but it just seems like a dream. Besides my legs being weak I have pain in my hands and arms. Last night I had to wrap them up in a heating pad for some relief. I hope this is the worse of the SE but I am worried that they will linger for a while.
I see the PS on Thursday, part of the tuck on the left breast is not holding so the breast is sagging and I can’t wear a bra. This was a recent development so I’m not sure why this happened. I was and am still small breasted which is okay, I wanted some shape. The sagging will need to be fixed.
I’ve been watching MSNBC replay the coverage from 9/11, I to remember so much about the day. I work on a College campus and the students were so concerned for their family and friends. Trying to get information and share with the community was very difficult.
I thought I would share a link to a carton I sent to my DH.
https://swatfiles.swarthmore.edu/xythoswfs/webview/_xy-2518300_1
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I was returning to work that day from maternity leave.
Police headquarters is not far from the WTC.
I was in the restroom when the first plane struck, and it was reported as a "sightseeing" aircraft. It immediately made NO sense to me as there are plenty of aircraft around NY and you can't "accidentally" hit a building that big!
I immediately called my husband to puton the TV and he couldn't get a channel clearly, as we had moved into our home 3 weeks prior and cable wasn't connected.
I later found out he was watching through static (rabbit ears) until the building collapsed and the signal went out.)
I was looking out the window at the first struck tower when a friend working in the "return from leave office" asked to see...I moved out of the way (tight spot, needed to crane your neck)...at that exact moment she witnessed the second plane strike.
I think God was with me that day as I did not have that very moment etched in my brain.
I immediately vacated the building...KNOWING it was terrorism and fearing our headquarters (large building in that area) would be a target as well.
All I could think of were my babies.
Next to HQ is a church, I ran in and gave a two second prayer for all.
When I left there was was an extremely distraught woman in the middle of the street.
Turns out she had survived the bombing the first time in '93...and she just happened to be late for work this time or she would have been in her office. Instead, as she exited her transportation she was surrounded by jumpers hitting the ground. (We later learned a substantial amount of her coworkers were killed -she was from Cantor .fitzgerald)
She was a mess.
I started walking her out of the area, looking for a pay phone as there was no cell service. It was important to let her family know she was okay. We walked about 1/2 mile til I found a pay phone with no lines...and thankfully got through to one of her relatives. I then walked her another mile or so (what seemed like eternity) to her sisters apartment.
I feel we were so fortunate in that there were no additional ground attacks. When the first tower collapsed we were still walking on a side street...everyone standing on the street corners watching the towers burn was screaming and running...I honestly thought a ground attack was under way.
When I took this woman home I had her hit an ATM machine and buy bottled water...part of MY personal plan to deal with this....due to my prior training.
All this time I couldn't get through to my husband . When I made it to this sisters house I used her hardwired phone and was able to get through to Pennsylvania to my parents...so I asked them to see if they could get my husband. Later I was able to get my MIL on the phone and I told her I would head there when I could get out of the city. All public transportation had been shut down and my car was in Brooklyn.
When the subways were running it was the quite st ride I had ever taken, and also almost empty.
I finally connected with my husband in a precinct in queens. He was reporting for duty there. We said our quick hello and goodbye and I drove to find my kids at my MIL's house.
No one was traveling on the roads...it was eerie to see one or two cars here or there.
It was complete solitude.
I was never processed to go back to work, and there was no way I could have. The shifts were extremely long and we had no child care as my father in law was helping us out and he was a fireman! The initial plan when i was returning to work was for my husband and i to work opposite shifts and his dad would help out twice a week and the boys would be in day care part time 3 days a week. hubby was put on 16 hour shifts, as was my father in law...who would watch my kids? So, I stayed home another two months while hubby worked crazy hours.
I was blessed that I did not witness the second plane personally.
I was blessed that I could go home to my children and family.
I was blessed I had not returned to work the day before as we had toyed with that idea. (I picked a Tueday because it would shorten my first week back)
I learned later that night that my cousin was missing. He was a fireman.
They recovered his body just before Thanksgiving.
(Not a close cousin, but my Aunt and Uncle will never be the same)
I learned of officers/firemen that I know that were killed as well.
I count my blessings.
My father in law died 9 years ago. His death was declared 9/11 related this past year.
He was 63 and is sorely missed. Next week hubby is going to the International .firefighters wall for a ceremony putting his dads name on the wall.
9/11 taught me life is too short and there are horrid people out there. (Well, I knew from my training there were but this PROVED it)
My babies kept me sane.
Cancer is my second wake up that life is short.
Pat -
Wow Patty what a day 9/11 was for you. You first responders are an amazing bunch of people. I was safe and sound at home homeschooling 2 of my children. Turned on Tv in time to see second plane hit. Was a surreal moment in our lives. My children have never forgotten the moment. Have all written papers in high school about the day. Dh and I are news junkies and kids have turned out the same. We have always worried that Americans would forget the terror of that day and worked hard to be sure our kids would always remember.
Glad you are here with us (wish it were for better reason).
Lisa -
For those moving onto rads, I hope you have been reading the rads boards?
I had read them back in February when I was told I was getting rads...when I decided on double mastectomy I was told. I did not have to do rads do to my cancer location.
Anyow, here is a link to one of the threads I had followed... http://community.breastcancer.org/forum/70/topic/783321
It starts in the middle of the thread (last page I had read up to)...the opener of the thread had some great info. I think there were a bunch of names of creams etc...as well as the actual experience of those undergoing rads within this thread, so you might want to go to page 1 of the thread and move on.
Pat -
Kobrien and Kate. Hope all went well for the both of you today.
I have been reading the rads thread tor a while. It is amazing how much info is here and I find it reassuring to hear from those who have gone before me. Drs seem to poohpooh se's so I like to hear from others.
Lisa -
My Emu oil arrived yesterday.
I have been shocked at how many acquaintances have made comments against me doing radiation. I'm like, I'm stage 3 with lots of lymph node involvement. I don't feel like I have a choice! I am doing radiation!
I am tired of unsolicited advice when it comes to my treatment. -
Arya... I hear ya....
Even my hubby offers his negativity to my treatments... I'm like, "I've never had cancer! I have to trust those that know about it to tell me what I need!" plus... It seems all doctors say to do rads with lumpectomy, even if I did nothing else....
I've been on "summer rads" thread & gained a lot of helpful lotion/potion tips. One that I haven't seen is lavender oil... There was a study done about it's effectiveness for burns. A coworker of mine brought me some. She also picked up a bottle of rose water....
I'm gonna do everything I can to try to minimize a burned boob!
Lorrie -
Hi everyone, - I finished chemo on 7/17 and why am I losing my eyelashes now?!?! Anyone else? Also, my nails seems to be a little yellow, again anyone else? Thanks for your input! It's much appreciated!!
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Debbie,
I finished chemo on 7/8...my eyelashes are coming out now.
My eyebrows can be considered "bushy"...seems like overnight!
My nails have the 4 white lines to show my 4 infusions...but are not yellow.
Prior to chemo I had seen a podiatrist for a bad toe infection...chemo came up and he said he sees a lot of patients with toenail problems from chemo...after chemo is done. Said it is normal and not permanent (at least that's what I think he said). So if the podiatrist ses toenail patients I'm sure the fingernails have issues too.
What type of doctor does those? Dermatologist?
Here is a link regarding nails.
http://breastcancer.about.com/od/lifeduringtreatment/tp/fingernail_disorders.htm
Sounds like you should call your MO and she what he/she says...why pay to see another doctor if you don't have to?
I am taking the vitamin Biotin..on the label it says good for nails, hair and skin....couldn't say if it works or not (what do I have to compare it to?). Figured it couldn't hurt.
Good luck!
Pat -
Glad you ladies are researching rads.
I had made a list in a notebook for rads remedies....now if you saw how many notebooks I have around my house you would understand why I can't find it!
Wishing all of you the best with this next leg of the journey.
Pat -
Same experience as Patty. I have the 4 lines on my nails. I had a problem with my big toe for awhile, no infection, just bleeding from the cuticle and pain. Then I stubbed it! It was excruciating! I have not lost any nails.
My head hair is growing in since I began Taxol. It's pale blonde and normally my hair is really dark. I have 1/4 inch of pale fuzz. I am going to dye it blue once it's a little longer. At least I won't have to bleach it first.
My brows and lashes continue to disappear. On my last Taxol, I went to bed with a full row of bottom eyelashes and woke up with 3 lashes left on each side! I have learned to love eyeliner and eyebrow pencil.
I am taking Biotin too.
I miss my eyebrows the most.
I bought a fairly cheap but nice looking wig this week on etsy it has ombre highlights. It would have cost more to have my hair highlighted ombré than buy the wig. I now have several in different colors including pink and blue/green. I have decided to have fun with all this.
I am tired of being sick. -
Okay... Here goes.....
I have one toenail that is weirdly deformed and gross looking, but just noticed tonight that I have a couple (4) fingernails that are gonna go..... I'm done .... Why is this happening when I have to go tomorrow to let them tattoo me and set me up for 7 weeks of more misery? I'm so upset tonight!
Sweetie's ignoring me to avoid a confrontation tonight, I don't blame him! I FUCKING HATE what I have to do!!
I'm sorry for my language! But it's how I feel! He asked if I wanted him to go with me & I said "no".....
I can do this on my own! Right? -
Lorrie,
Would your husband go to a support group?
I swear mine should...maybe he would hear "worse" stories and feel better!
Mine was dumb enough to comment about my weight gain. Yesterday he bought a bag of Godiva truffles for me! Duh!
I have to forward him links about my upcoming surgery so he can have a clue. I don't understand why he won't look it up himself.
The kicker was yesterday he told someone he had to wait to look for work until I am recovered. So he will start looking in the Spring. I have a lot of "issue" with that.
He needs to get a job or do volunteer work. He is using me as an excuse for his laziness! And, my surgery is done in stages...big one oct2 will be longest recovery, and honestly after a few weeks I will be mobile enough, just not able to be "full duty" in regards to chores. Second 2 stage is about a week out of commission. Final is no out of commission. So why wait til the spring!
That's okay. I "volunteered him" to help out a local Senator with the Student Advisory council if they ever needed a chaperone. He has to be on a bus this Tuesday at 4:30am. So I got rid of him! Lol. Anyone need a "rent a man"? Specialities are NONE. Might need a light dusting from sitting too long.
Ok, way off track. I'm getting crankier by the day getting up at 6:00 to get son up for school. My hours to dwell have now increased! Lol
Lorrie,
I hope all goes smoothly. We will all be thinking about you today, so WE will be with you at your appointment.
Pat -
Hey All,
I'll comment on my surgery in a bit - but my eyebrows and eyelashes started coming out 2 weeks ago - 4 weeks after I finished my last chemo. I hate that
They fall into my eyes. On Monday I wore fake eyelashes and my wig to work and couldn't wait to get home and rip it all out!!!9/11 - my husband was working in Manhatten at Rockerfella Plaza. I was 8 months pregnant with Seth and my mum had just died the month before (August 8). I was watching Barney with my 21 month old daughter when my friend called me and told me to put the TV on - saw the 2nd plane hit. DH called and said they were leaving the city. His was one of the last cars to get over the George Washington Bridge before they closed it down. He was home with me by about 9:30am. Such a sad sad time right after losing my mum....My first (unsuccessful) marriage took place on a barge right under the Brooklyn Bridge with the twin towers in the background. My great aunty Lily pulled out pictures from that wedding a few years ago and it was sad to see how much had changed since. My mum, my ex-mother-in-law, my uncle and my cousin's husband had all died from cancer since that wedding. And of course, no more twin towers either....
Okay - on to the surgery. All went well! It was a faily long surgery - about 4 hours but my plastic surgeon was pleased with the results. It is crazy how quickly they kick you out of hospital when you have "same day" I remember the clock said 5:30 when I was in the recovery room waking up and at 7pm, we were in the car driving home! The nurse did a great job with my IV - hit it first time with minimal discomfort. However, my urethra really hurts - trying to pee has been really difficult so they must've done a crappy job with the cathetar. And my throat really really hurts from the breathing tube. This was a different hospital than where I had the mastectomy done. I actually had my youngest son in this hospital, but I think if I had to have any other procedures, I'd go back to Duke Raleigh. Anyway - I am happy to see both my breasts at the same level but of course I haven't taken off the support bra or anything. But all in all, this feels so much easier than the mastectomy. It may also be because i've been through so much since that happened! Oh - and they let me wear my buff on my head thru surgery which I thought was pretty cool...So I'm back popping the Oxycontin every 6 hours and thinking that I'll manage tomorrow without DH around...and then REALLY planning to be at Temple on Saturday for Yom Kippur. I think that will be "Soul healing" for me....
Also, we had a cleaning lady come yesterday too - it was the last cleaning from when my friends had put money together to organize this for us - so it was nice to come home to a clean house.
I feel so badly for you all facing Rads - I'm sure it must be really scary. I'm SURE it can't be as bad as chemo....xxxxxx
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As you all know I have lost all my fingernails...quite unattractive. Eyelashes been gone for awhile. Eyebrows sparse. Hair about 1/4 inch some mix of blond dark and grey.
Kate so glad surgery went well. Try not to do too much while recovering. Yom Kippur services will be a nice way to recover. Soul healing is a great way of putting it.
My dh also questioned rads but mostly because he is tired of watching me going thru treatment. When I went under for mx we both thought I was stage 1 woke up stage 3 and lots of info thrown at us re chemo and rads. I do the research and tell him what I find but don't think he always listens. I KNOW I need rads but Dr had to explain to him for him to understand.
Monday I go for simulation and then port flush. Last time port wouldn't work so flush could be long appt if they cant do blood draw. They will put something in to dissolve blockage and let it sit 2 hours and try again. Rinse and repeat if that doesn't work. Could be very long day.
Lisa -
I am so excited. My bil just called to tell me he is taking me to Ravens game and we will be in a skybox. Best bil ever!
Lisa
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