Chemo in Sept 08
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Evening my lovely peeps.
I have been sicker'n a dog if that is an appropriate comparison. My Taxol was discontinued by my Oncologist and my Neurologist yesterday. I was wrong when I said I had one treatment left, I had two Taxol treatments left... I had just two treatments.
I'm contemplating a bilateral Mastectomy because I've had such a haphazard treatment schedule. I will talk to my Oncologist next Friday very forcefully about my Triple negative status, my scattered treatment plan and a possible Bilateral Mast with replacement surgery.
Presently, I am walking the streets of NYC, in a fox trot pattern, mixed with a bit of a waltz. T'is life my friends: at least I'm not walking into another person on these busy streets, saying excuse me, meanwhile unable to change my trajectory. arrrgh!
When I left my doc yesterday the doorman had to point me to Madison Avenue. My Onc feels my chemo brain is pretty bad but will get better??? I got chemo brain from Methotrexate in 2001 for my Rheumatoid, and my brain never sharpened up again. HAH!
About the neuropathy; my Neurologist and I have a beautiful relationship. He decided to check my gait then check me for neuropathy. My R ankle is mildly swollen, and lo and behold when I looked down, I saw that both of my feet turn on the sides of my feet when I walk....he says that's because I can't feel the bottom of my feet, so I walk on the sides of my feet.
He took something sharp and attacked (just kidding) the top of both my feet. I felt I tolerated that procedure A-OK? Was I ever shocked when I pulled off my socks and spots of blood were noted on the inside of my socks.
That's my doc's fear (neuropathy) due to my Diabetes so she and the neuro said no more Taxol. She will check with her collegues for other therapies but she told me that most of the best therapies for Triple Negatives belong to the Taxol family.
I may take my happy big butt down to Sloan Kettering if I get too nervous. I am as tired now as I was energetic when I was having so much fun writing you on Decadron.
Clarification...I don't recommend weed...I was just telling a tale to everyone because I was actually mystified and overwhelmed with joy by such immediate pain relief...so please if you have any, ANY troubles with drugs...TAKE NOthing....I am a RN ands know more than I ever wanted to know about how easily patients can get hooked.
Don't forget me if I dissappear. I love you all... my phone number is 1-917-547-5601 or maybe we might chat some night on a chat board when I need a bit of consolation.
My nearly 22 y/o son is wildly in love with a 35 year old beautiful woman from Costa Rica and Peru since last week. I'm speechless, and I'm trying to stay that way cause we all know how young people love to rebel or maybe she is his partner if I don't make it...not being morbid just realistic.
love and prayers forever,
mina
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Hey Mina!! Great to hear from you, and SO THRILLED that you've got a couple of doctors that are making some sense! I also loved "Happy Big Butt"...which is exactly how I feel about my "Icky Steroid Roll"! LOL
Juli...My reasons for leaving the March rads board was because I had introduced myself (third post) and a few other times since my simulation, and wasn't even acknowledged. It might be petty to some, but compared to this board (full of "family", I might add), that board completely sucked a$$. The April rads board is MUCH friendlier. Come take a peek!
I had my third rad tx this morning, then went over to meet with a rep from the Komen Foundation regarding a $1000 dollar grant that's available to each woman receiving tx for bc in Muskegon County. She had told me to bring in my lease and any bills I may have. I did, she made copies, and asked which one was most important, and I said it was my lease. She approved me on the spot, and for the next two months, Komen is paying my rent! She'll call me in a day or two and have me come in to sign for the checks and then I can send them to my landlord! Can I tell you what a relief it is to not have to worry about this?? Check with your rads center to see if there is something like that in your area...I also received $100.00 in gas cards for the month of March, and will get another $100.00 in April!! It can't come at a better time!
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BrandonMom,
I think with any mastectomy, there are trace amounts of breast tissue left behind, skin or no. They can't take ALL the skin, It reaches over to your armpit and up to your collar bone. (The whole RADS area). They take more skin off if it's not a skin sparing MX, and then expand it out.
Mina, woman, you are NOT GOING TO DISAPear, but thank you for your phone number, in case you end up like Jules in the hospital, which we really don't want to happen.
Are you happy to have your TAXOL OVER?? I am sorry the decadron wore off. LOL.
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Mina,
Just a thought. You were getting dose dense taxol, and I've heard from many that is very hard. I had the weekly dose for 12 weeks, the first 6 weeks were very uneventful. It is a smaller dose, but over a longer timeframe. You may want to ask your onc their feelings on that regime. Chemo, it is a love-hate relationship.
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Hey Miss Mina.....good to see you sweetie!!! I had to laugh at your post.....you are such a funny lady! Doin the fox trot down the streets of NY. I can see it now....bless your heart. But you haven't given up.....what a FIGHTER you are!
I think you are one of the few that loved the Decadron feeling...lol.
Robin....I wouldn't even know where to begin to check on that grant. I have an appt with my Onco on Tuesday....I'll ask if they have anything like that available. God knows I need help with my bills. My car got repo'ed the night I came home from the hospital. It's just been a wonderful past week here at this house. Trying to pay all the bills on 900 dollars a month just ain't cuttin it. Not when my mortgage is 500. So I had to decide which to let go.....the car....or the house. I chose my car. Jim has an old clunker that is being repaired right now....so we can drive it to my Dr. appts. That's about the only place I go nowadays anyway.
I'm still very sore.....and itchy. Hope that means it is healing up......
The needles under the arm are driving me nuts tho......grrrrrrr. The pain just shoots through it and I almost jump. Not a good feeling.....
Love you all.....
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Genia...I wonder in the centers were you get your treatment or upcoming treatment has a social worker there? Both places have had a soc worker available for those who need help. I wish you were getting tx here!!
I'm gonna be at church til 8:30 or so tonight...you're all in my prayers!!
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Genia - I had to re-read your post a few times before I figured out that you put the FAN on your jewelery armoir. The first few times I read it I thought YOU were sitting on the armoir. What a picture!
The only help I've been able to get is from the ACS - they'll give me $100 reimbursement for mileage. I'm very fortunate to have good insurance.
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Jane...that made me laugh out loud. If you saw my jewelry armoire.....and then saw my body.....lolol. I would look like a toad on a toadstool!!!! lololol
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Robin....they do have a social worker there. But she's never been there when I am there. I've asked a couuple of times.....they tell me they will have her call me.....but I would rather talk to her in person. I'll ask again on Tues when I'm there.
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brandonmom - the info I got from my cancer surgeon, there is always some breast tissue left with any mastectomy.....that is why you can always have a recurrance. Yes, a skin sparing leaves a little tissue but just a little more than any other. She said the percentages are about the same either way. Hope this helps.
You all are so funny, I have been taking Ativan at night to sleep thru the hot flashes as well. My onc won't give it to me any more as I am "done" with chemo. Ha !! My family practice doc was great and let me have more.
Oh, and the apple pie was great!!! I was so happy to cook a little and taste something sweet that actually tasted good. My chemo brain is so much better and my neuropathy is almost gone!!!!
Trude
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Trude,
Thanks for the update. I knew they can never get all the tissue, but the way the rad onc was acting, it seemed like a lot more. So good to hear you are on the mend
Today was my first Wednesday this year that I didn't have to go to the onc for chemo! Woo hoo! Didn't know what to do with myself!
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Hi girls,
Mina, hang in there, you are not going anywhere and you son will make the right choices for himself, he has a great mum to learn from and I would trust in his judgement. Things are meant to work out right, he will be fine and so will you. Hope your chemo brain clears and lots and lots of new brain cells grow.
Hey girls, just imagine how worried I could be as I only had a lumpectomy, so there is not only skin left. The survival rates are the same for lump v mast, it's just a matter of choice. I feel completely cured and don't think my old cancer will come back, I have had a hard treatment plan and I don't think anything could survive it. We are lucky we managed to!
Genia, I wish there was something I could do for you, is there anything you can do to earn some extra money. As you are a fitness instructor, could you devise a short plan for the chemo girls to get back into shape after illness. I am sure a lot of us would be happy to pay for it and it would motivate us to do some exercises at home, Even a single A4 card with some diagrams would sell for a few dollars, and if lots of people bought them you could be rich! I will be happy to add an inspirational line to every exercise for you.
Spring, I have one of those page a day calendars, this one is published by hayhouse.com I have also thrown some of my own in as I have many years of reading these this kind of thing and trying to support my clients.
My gyny said all is well with nothing new to report, it was the tamofaxine and my ovaries starting up as I am so YOUNG!!!
Take care girls, and try not to worry too much, we will all make it and go on to have wonderful lives.
"I am open and receptive to the next step on my spiritual pathway'
Singapore Chris, will report in after a week. xxx
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Chris, I like this one too: "I am open and receptive to the next step on my spiritual pathway" - are you on your trip now?
Oh Genia. Dag nab it. This is reminding me of Job in the Bible. Cancer, mastectomy, no $$, and car reposessed. It is too much. If you can't find that social worker in person, start with her on the phone. Maybe she can point you in a couple of directions? I wish you would write a letter to the President. How many others are there out there going through this as well?
Brandonmom, on the breast tissue thing, I think it is just up to you what makes you feel okay psychologically. I made a lot of my decisions on "I dont' want to have regrets later". What chemo to take (I took the harshest), Uni or Bi-lateral (I had Bi). Rads or no? (I had the rads.) I just found it a lot easier to do the mastectomies with skin sparing. Will you have rads too? It is such a personal journey to go through...
Thinking of you sweet Mina! I hope you are getting your mojo back.... How are you Jules? Trude, FAX me some Pie woman!!! LOL. (Imagine that in the fax!!)
Springie.
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Robin - I think we should move to Muskegon County. How generous they are! I agree about the March rads group. I felt like I was talking to myself too!
Mina - I am nominating you for the next Dancing with the Stars... fox trot and waltz! I love it!
Spring - I just polished off the rest of my girl scout cookies (pb sandwich kind). Good thing I will be off the steroids soon!
Genia - How are ya feelin' this morning? I need to play the lottery for you. I feel so bad they took your car.
Trude - I can't wait for my taste buds to get back to normal. All the meds in the hospital really screwed them up.
Jane - any skin issues from rads? what are you putting on your skin?
Happy Thursday to all!
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Well, I'm home. FINALLY. I started out this morning at 7AM, driving my daughter to school, then headed down to Muskegon for my next rad round. Technically, I didn't have to leave until 8AM, but I don't like to rush, and we've started Construction Season. Ya. Hoo. I got my blast, then went to the pharmacy across the street to pick up my RadiaGel because I'm already pinker than they'd like to see. (damned Irish relatives) While I was waiting for my prescription, my Angel and a different Dept of Human Services called me and said that she's sending me a mileage reimbursement sheet so I can get reimbursed by the State of Michigan while I'm going through rads. How much do they pay per mile? $.50. How many miles is it round trip each day? 118 miles. That's almost $60.00 per day, $300.00 per week, and $1200.00 per month that the State is gonna pay ME to travel to and from my treatments. If ANY of you are getting your treatments taken care of by your state, CHECK INTO THIS!! Heck, even if you're not, and you have regular insurance, check into it anyway! I don't even know if you have to own a car to get reimbursed...but it's sure worth a shot!
This has been a good week for me...I hope that yours will wind up being a good/tolerable/stellar week, too!
Robin
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Good for you Robin.....very happy for you girl
Chris...I was a fitness instructor in my 20's.....don't think I qualify now.
I have been majorly depressed today......I think everything is starting to catch up with me. I've been in such a whirlwind for weeks now.....and today I have just crashed. I miss my boob.....I don't like not having transportation.....and worrying constantly about bills and money is getting me so down. I really don't need it on top of everything else. Just took an ativan.....got to calm down.
love you all.....
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Genia,
thinking of you doll. Good move on the Atavan. Chill for a bit. Did you get an expander where the boob used to be, or no?
Robin, the comment about Irish relatives cracked me up.
Spring.
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Genia -Me too.....I cried in the shower last night....told my dh it was so hard to still have stiches, a drain....and can't use my right arm.....have to ask for help with everything. The expander feels funky and my arm pit hurts. No cancer left was at least good news. I got my first disability check today, that will help some, but money is so tight ....it's down right depressing. My doc uped my zoloft before surgery, I guess I just crashed yesterday. May be tomorrow will be better for both of us. Not driving and looking at my dirty house just makes it worse.
AGHHHHHH!!!!!!!
Feel better now, Trude
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I am swelling really bad on the outside of my breast.....under my arm. I'm wondering if the drain tubes may have come out too soon. It hurts.....I do know that! And this underarm pain is something else. I thought it was supposed to be all numb once the breast was removed.....well it ain't. I have numb SPOTS.....but more places have feeling than is numb. I know good and well I'm not that big of a baby......but I sat a cried today from the pain. Broke out the pain pills too.......I'm drugged today.....but oh well. Sure beat crying all day.......
Hang in there Trude.......
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Today was day 24 of rads - 9 to go. My underarm is pretty red and stings. I have been using the biafine the rad onc gave me, but I think I might try plain aloe; I don't know. I have an angel tattoo on my left shoulder and that is exactly where the rads is traveling through. It's red and bumpy and itchy back there. By the time I'm done, my angel will be a devil.
I saw the rad onc today. I gained .8 lbs this week...ugh! I hate gaining any more weight, but my will power won't. I'm constantly craving snack food anymore. My pulse O2 was 90 when I was there today. I told the doc that I have been having trouble breathing for a couple of weeks and that when I saw my PCP, she heard more wheezing than usual when I took a deep breath. She said it was too soon for the rads to effect my lung. I don't know how she knows that? So, we'll see where that goes. I have had asthma since the day I was born.
Genia - you need some sunshine, lady! There have been too many dark skies there today. I think you should go live with Robin. Her state seems to be right on the ball with its benefits. New York state doesn't offer anything like that.
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Howdy my lovely peeps...I wrote a note to everyone; it disappeared, unless I posted it and forgot where/what section I posted it in. I can't sleep again. I could only take 2 treatments of Taxol...I should be happy( I'm finished with chemo) but I want all the protection I can get.
My Onc is off consulting with others, getting ideas about what I can take in place of the Taxol.
I may go over to Sloan Kettering for a second opinion since I had such a sketchy treatment for this Triple Negative nonsense. Forgive my short note...trying to get a little sleep. I have one friend who is such a pain about me looking for more treatments.. I sent her an article about how fast this triple negative can make its' presence know again...maybe she's ll get it...or NOT. I can't stop crying off and on during the day....maybe I need a pill...calling my PMD today....he knows me and may give me something. I see I did write some of this to you earlier under chemo brain and promply forgot I'd told you all about my painful bloody feet.
Yep, you really are delicious friends.
love to you
sass
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Genia, when do you go next to the Dr about the swelling? I remember having the pain and crying as well - I was trying not to take the Vicodin b/c of constipation, my mortal enemy, but I had to give in and take the pain pills, and "deal" with the constipation via other means, that I will not describe here!!! The pain, it gets better every day, but it still hurts for a while. Take the pills is my advice. No need to suffer. You will get better, it takes time.
Mina, I think checking in with Sloan Kettering is a good idea. You be in NYC woman, take advantage of it!!! And get the pill if you need it. I am just weaning off my pill for crying jags now. If they start again, I am going back on!
Jane, you almost done woman! Gosh, there is that light at end of tunnel girl! But how can a person gain 8lb in one week!!! Laws!!! THow is your skin holding up? Mine was getting red about now. But it healed up really fast. Hold on! Not much longer now.
Update on me: I saw Onc today and got a script for Tamoxifen! Like Chris! I was thinking she'd put me on AI given my blood work showed "post" menopausal levels, but she said that my ovaries my try and come back to life, (not good with an AI) and since I am an "extreme metabolizer" of Tamoxifen, she would liek to do that for a year or two. (Better for bone health and a lot of other things). So, I guess I will find a Tamoxifin thread as well!
Springie.... thinking of all of you....lovelies, gorgeous women, beautiful souls... : )
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Bev....I go to see the onco on Tuesday. I think the swelling has gone down just a tad. I put an ice pack on it this morning and it really helped. I think the drain tubes may have needed to stay in there for a few more days.
I'm still down in the dumps......oh and thanks for the sweet cards Juli, Lisa and Jane.
love to all
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Jane - I think the rad onc may have been thinking of a type of pneumonia you can get a few months past rads. The interesting thing was that my rad onc said if they do a chest xray and it shows that's what it is, they treat it with anti-inflamatories. Now I can't remember if she said tylenol or advil was the anti-inflammatory, but I suppose you could try taking one of those and see if you get any improvement. I don't think it could hurt.
Genia - You've been on my mind a lot. Call that social worker! I know there has to be programs that can help. I' m so sorry you lost your car. Perhaps we should each take an hour of calling your social worker. Once she knows we aren't going away, maybe she would do something. Don't feel bad about taking pain meds. We all react differently and we have all had different surgeons. Even though I wasn't so much in pain nor taking pain meds, I still had my day of tears as well. I had my surgery on Weds, and it was the following Monday that I was just in tears. But think of it, you are cancer-free! I really felt after awhile I felt better than I had in a long time. Hang in there.
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Oh Genia, I meant to tell you, when I wake up in the middle of the night, I say a prayer for you. Do you feel drenched? LOL
Spring.
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And I thought it was night sweats Bev.....hehe.
Tryin to pull myself outta this shell.....it has to be a lot of hormone issues too.
I love you girls.....so much! Don't know what I would do without you. And I mean that....
The swelling is goin down a little bit....I think. I'm alive.....that's what I need to keep telling myself. Stop worrying about all the stuff I don 't have any control over.
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Spring, I gained .8 of a lb as in 8-tenths. Good golly! If I gained 8 lbs, I think I'd have to shoot myself.
My dh has had melanoma twice and today it was time for his 6 months checkup. He was actually due in January, but I was too sick to make the appointment for him, so he didn't go. So, I went with him today and his dermatologist told me that radiation can cause squamous cell carcinoma and he would like me to follow up with frequent skin checks with him for a while when I'm done with rads.
I think this whole cancer thing has made me sentimental or something. Every day for the last 24 days, I had my rads after "Liz." "Liz" had a bi-lat mast and was having rads to both breasts. Yesterday was her last treatment, so I brought her 2 pink roses to wish her well. Today was day 25, and the 25th day I've had an appointment at the same time as "Carol." "Carol" had pancreatic cancer, so today I brought her a yellow rose to wish her well in her recovery. I just can't spend 5 weeks getting to know someone like that and not feel for them.
This cancer thing really has changed me in a lot of ways...for the better I take better care of the people I care about and me as well. Since I have been traveling for rads every day, I have been stopping every Friday and buying myself flowers. I decided that I like flowers and they make me feel good. I could either whine and pout because nobody brought home flowers or I could just buy them myself and enjoy them - so, that's what I do! My therapist thinks I'm funny. She's been trying for years to get me to stop beating myself up over everything and to stand up for myself. Then, something like this happens, and I turn into the person she's been trying to get me to be.
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so tired...hi friends..I got a 1/2 inch strip of cloth from the staff and used it to hang the drain around my neck, showered and then changed it later to a dry one when it's time to wear a new tie.
MY R only ankle and feet edema, I'm told is from the Taxol, by both my Oncologists and my Neurologist. They say leave it alone for now. YUCK!!!! I've tried to elevate my leg, but to no avail, so I hope it goes down and looks a lot better real soon or I'll take my CANE up to TAXOL!
I'm afraid of my asthma...some of my docs say do it...radiation... and some say don't....wouldn't you know...I have subcutaneous lupus....Bah Humbug. I will decide this one .I'm a PC and I'm 63 and 6 months old. I've got a brain, so there...I'll take radiation when and if I get a few more consults.
I'm too tired to remember what I want to say except love you all.
mina
PS
That silly Taxol took all my new growth hair out...Arr. all the way out, no hair, I am left bald, just when a nice lady told me she liked the shiny silver hair at the sides of my head...I almost kissed her but controlled myself... just a bit.
Thanks so much pretties for the tips about the various foundations. Healthwell helped me big time with my IV Taxol and my injectable Neulasta which was $480.00 per first co-pay.
xoxoxox
mina
gotta add this, I gained 12 lbs in one week, when I was on Prednisone 20 mgm per day, for the RA before I got the Methotrexate...very awful sad mina hated the scales that week.
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Tomorrow, I'll try to coerce my son into hanging out with me at one of these restaurants...fat chance. HIs mind is on this new girl he met two weeks agoo. arrrgh.
I want the comfort food, Fried Mac and Cheese with fried Pori Belly or maybe we'll stay at home, rain is forecast yuck...... the prices aren't bad and I do need a day out with the hum of peoplemakingme wish I had stayed at home,. honking horns and fire engines.squealing through the streets.
First choice..
http://www.craftrestaurant.com/
Second choice
http://www.yelp.com/biz/cowgirl-hall-of-fame-new-york
If I have to go alone, I'll go to the Cowgirl Hall of faame...Prices are great and I can slide right up the bar and have aan Peach Margartia.or a Mojito. Thank God we can take trhe train home here for a while longer; if the fares keep going up that pleasure may leave us soon..
luv everyone..
.I think the 60 mgm of Decadron I had to take time 3 days really messed up my sleep cycles...arrrrrgh.
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14 minutes ago, edited 7 minutes ago by bar62 bar62 wrote:
Tomorrow, I'll try to coerce my son into hanging out with me at one of these restaurants...fat chance. HIs mind is on a new girl he met two weeks agoo. arrrgh.
I want some not so goo for me comfort food, Fried Mac and Cheese with fried Pori Belly, or maybe we'll stay at home, rain is forecast yuck.. The prices aren't bad and I do need a day out, listening to the hum of people, making me wish I had stayed at home,listening to all the honking horns and fire engines.squealing through the streets.
First choice..
http://www.craftrestaurant.com/
Second choice
http://www.yelp.com/biz/cowgirl-hall-of-fame-new-york
If I have to go alone, I'll go to the Cowgirl Hall of faame...Prices are great and I can slide right up the bar and have aan Peach Margartia.or a Mojito. Thank God we can take trhe train home here for a while longer; if the fares keep going up that pleasure may leave us soon..
luv everyone..
.I think the 60 mgm of Decadron I had to take time 3 days really messed up my sleep cycles...arrrrrgh.
4th Taxol due March 27th then Rads
Dx 6/6/2008, IDC, 3cm, Stage IIa, Grade 3, 0/19 nodes, ER-/PR-, HER2- [Edit] [Delete]0
