African American Women & Triple Negative Status
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Hi Ladies!
I'm doing well! I spent Labor Day Weekend in the hospital because my oncologist was not the on-call over the weekend and on that Saturday, I spiked a 103.6 fever. I thought it was a reaction from the Zometa infusion I had gotten the day before, but the oncologist on-call (an older doctor) didn't think so. So he admitted me. *sigh* They ran every test under the sun looking for some mystery infection, while pumping me full of IV anti-biotics, anti-clotting drugs, and Neupogen. Not to mention round-the-clock potassium, calcium, and iron infusions.
My doctor returned on the Tuesday after the long weekend, took one look at me and said, "Oh, you're having a reaction to the Zometa, you can go home today" I didn't know whether to hug him or throttle him! LOL!!!
I think I had a chronic case of GoodInsuranceItis! *smh*
On the flip side, I am grateful that I DO have that good insurance, so many don't, and that I have a medical team that does err on the side of caution. Even if it ruins my weekend. LOL!!!
So all is well. My mother is still having health challenges so we are dealing with those. Keep her in your prayers as well.
I moved home from her place two days ago. She needed to be back in her room in her own bed, and I needed to be back at my home as well.
I got my last drain out yesterday and got my silicone prosthetic and 4 new bras! What a relief! I don't look lopsided anymore! :-)
But that prosthetic? Good Gravy! It is literally as big as my head! A Triple-D! GiNormOus! I'm a busty gal (for now). LOL!!!
You are all in my thoughts and prayers and I am grateful to remain in yours!
Alaina
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Linda, love your spirit - keep it up.
Alaina so glad to hear from you and sorry you had to spend the weekend in the hospital, but, better to err on the side of caution. I wonder why the on-call dr discounted the Zometa - that stinks. 103.6 Wow - that's serious. I'm thrilled you're back home and will keep you and your mom in prayer.
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Patoo---Thanks so much!! I hope all is going well for you.
Alaina--Wow what a bum deal--glad that is over for you. Glad you are back home
Prayers for your Mom.
Take Care of You.
Linda C.
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Hey Ladies,
Just thinking-- and thinking about posting-- and thinking about whose "post" we been hanging out on, and thinking and sending more Prayers for Triple Neg(Stephanie) perhaps someone will see it and let her know that we are thinking about her.
OK--Everybody---Stay Blessed!!
Linda C.
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Yes Linda. I think about her often. Stephanie, if you lurk know we are thinking about you.
Everyone have a good weekend.
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Entering Phase 3!!!
Life has taken over, and I suspect that's a good thing!I've been off work since the surgery for 4 weeks! For a while in the beginning of my recovery, I was climbing the walls with boredom.
Now that I've been cleared to drive, and am getting my range of motion and mobility back, I'm starting to rather enjoy not having to think about work! LOL!!!
I'm really torn about going back. I want to get back to "normal" (or as we in the sisterhood call it, "the new normal"). But the ability to explore and experience life when you have a whole day in front of you that you can design (instead of having it planned FOR you) has been AMAZING!
I will start Phase 3 of my treatment plan on October 5th. That's when I have the simulation procedure for radiation treatments. Actual radiation will start around one week after the simulation. I will have 25 radiation treatments (Monday through Friday, 15 minutes daily) and then 3 booster sessions...so 5.5 weeks total.
All the while, I will continue to have Herceptin treatments through next April.
I have taken on the monstrous project of getting my Thank-You cards written. I was raised to hand-write Thank You Notes (a lost art I'm finding), so while it's taking me quite some time to get it all accomplished, I think the recipients will be happy and gratified that I took the time to thank them for all they (you) have done for me! Showing appreciation, even for the smallest act of kindness, is one of the most important things we do in life.
I am unhappily finding out that chemo is "the gift that keeps on giving." Even though my last chemo treatment was 7/24/09, I am still suffering some latent side-effects, and they are sneaking up on me! I got some gastro-intestinal "enthusiasm" mid-morning and it prevented me from traveling far from home today (and I had a party with friends to go to in Virginia tonight!) *pffft*
So I consoled myself with one of my favorite drinks, Welch's Grape Juice over crushed ice (yeah, I think I've spent wayyyyy too much time in the hospital, I'm totally addicted to crushed ice right now!)
And I will pay anyone who can tell me why I'm craving BLT's. I've had 4 in 5 days.
Anywhoo, as I get closer to rads, I'll post more.
Right now, my main goal is to force myself to do the left-arm exercises that my Occupational Therapist Heidi-Miranda is trusting that I'll do. I meet with her twice a week to undo the cording (scar tissue banding) that has developed under my left armpit and reached to my elbow since surgery. It's a common malady after lymph nodes are removed. Simply put, it hurts like hell...it hurts to DO the exercises, it hurts to NOT do the exercises. Yeah...go me!
But as some observant person once said, "if you can feel pain, you're ALIVE!"
So bring the pain...I can take it!
*pulling blanket over my head* LOL!!!
Love Ya! Alaina
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Alaina,
It is good to hear from you. glad you are back on the up and up.
Hang in there--your attitude is good.
Linda C.
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Hey Ladies! Glad to see the updates. Just got in from church......wonderful Men's Day Service. Just know the prayers for you all in (and out of) the sanctuary are still being lifted. Oops-make that for us all!
Patoo-hope all is well with you. I join you and Linda in praying for Stephanie.
Linda- Thanks for the updates. Stay blessed and Strong (for God is our strength but you know this.).
Alaina-I know how you feel about the work thing! I'd like some time to just focus on healing and doing activities that empower and are good for me. I enjoy my work but don't always have time to do what I vowed to do for my health (REGULAR exercise, preparation of healthy meals, etc) in addition to everything required of me at home and work.
I've been working thru most of this. Not to mention the Mom stuff-toting the kids to their activities, the open houses, booster meetings, etc. I keep thinking about whether or not I should continue to work thru the remainder of my "limbo" phase.
Definition of "limbo phase"- I Now have a VAC dressing in place (complete with sponges, tubing leading to machine which occasionally 'relieves itself' with a low pitched rumbling.) Wound care doc is guesstimating 2 weeks. I had begun to speak "3 weeks" over it week before last- so great! My onc said week before last if not closed w/in 4 weeks that I may not get last 2 rounds of TAC so that I can be sure to get the radiation tx in prior to the "window of opportunity" closing.
Also, I had axillary web syndrome, and have now developed full blown lymphedema (LE) -forgot and picked up a crying tot at church last Sunday. Such an innocent act, developed swelling that evening. Have to get officially wrapped tomorrow and every day this week. I'm not even sure I'll be able to do my job with the bandages on-neither is my therapist. So, I'll have to see! Rumors of "flack" re: my half days for med appts. Boss says do what I need....but I have PT appts everyday this week at various times) and wound care possibly 3x this week. ??? I'm thinking it will be easier to just forget it than go in and rearrange scheduled pts around my appts.
I decided not to get another port placed as infected port site with the wound it left after removal is what has me in limbo now. I'll probably get a PICC line and leave it in place until last tx is completed. (I'm claiming I get them in the name of Jesus.) Just have to be sure it doesn't get infected.
Anyway......as Stephanie would say, GOD IS ABLE! Although our situations may look slightly problematic..He is the answer.
Continued prayers (answered) , blessings, health, and Peace!
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Indomitable,
I read your post----WOW---what sticks out for me, "Claiming in the name of Jesus"--and yes as Stephanie said--"God Is Able".
Take care of you and keep us posted as we continue in prayer for all for healing.
Linda C.
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Alaina and Indomitable - so glad you are keeping us updated. Continuing to pray for both of you as you traverse this journey.
Indomitable, sorry about the LE - that stinks. But, God is in control.
Hugs Linda.
Blessings to all.
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Things continue to improve. Know that you ladies and all of our sisters currently and previously posting on this topic remain in my prayers. Hope all is well.....
Positive thoughts and much love....
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Hello everyone,
Indomitable--I am glad things are improving for you!!
Alaina--Hoping each day is better for you.
Patoo--hope all is well for you.
Missing some names on here, but I pray for this "whole thread in my prayers", so ya just know that.
Stay Blessed.
Linda C.
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Back to "Normal"
In the "pink world" there is no such thing as "normal" anymore. We refer to the collective activities of reclaiming our lives, ourselves, our time, our energy, and our bodies as "the new normal."
Nothing will ever be the same again.
When I'm home at night, without the prosthetic on, I sometimes "itch" and go to scratch a breast that is not there. Mostly this makes me laugh, but occasionally, I get a little wistful. I think my surgeon had it right when she said that I should wait to remove the other breast, if at all. The mere presence of one breast makes losing the other one a little less emotionally traumatic. It's my "security boob." LOL!!!
I'm still on track to have my radiation simulation on 10/5/09 and hopefully start rads on 10/12/09.
I still go to occupational therapy twice a week to have my left arm tortured, but it's working and my range of motion has vastly improved. I graduated to tossing-the-ball exercises today!
I found a way to arrange the pillows on my bed so that I can sleep on my stomach again (propping up the flat side). I sleep so much better now!
Lately I've found myself really craving crushed ice. So I went to Bed, Bath & Beyond and bought an ice-crushing machine. Got it home only to discover that it only crushes one ice cube at a time! If I can find my receipt, it's getting returned. I'm going to try the blender I got from for my birthday this past April. I think that might be too MUCH just to crush ice, but we'll see.
Fruit juice (especially Welch's Grape, or V8 Fusion Pomegranate Blueberry) over crushed ice is incredible! It's like a crunchy, juicy, icey, bowl of fruit! YUM!!!
My hair is starting to grow back in! It is fine, gray, downy hair right now, but it's coming in even and I'm excited to see what it will become! Right now, I'm doing a fine imitation of a baby goose (gosseling) LOL!!!
I've started a few more knitting/crocheting projects, and that has me happy. My October is shaping up to be a great month of craft projects, workshops, and other activities that make life more interesting in general. Activities that brought me happiness prior to cancer plus some rads and doc appointments tossed in must equal the "new normal."
I'll be back at work 3 days this week. Trying to ease myself back into the swing of things has been a bit more challenging than I expected.
I've started taking Viactiv (calcium & vitamin D) chews in a delicious chocolate flavor, Centrum Multivitamins (chewable), and will start on Biotin tablets soon to assist with the re-growth of my hair & nails. I take the diuretic and potassium as needed.
So that's all the news that fit to print from the last few weeks. Phase 3 is rapidly approaching and I'm ready!
Alaina
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Hi Alaina, your great attitude gave me a good laugh. You're right, we are in a "new normal" but it's livable - just a change and change happens every day in one way or another. In the grand scheme of things it could be lots worse. Thanks for the update.
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Alaina,
Your "new normal" , you make for life to be very interesting!! I like your style!! This is going to carry you( and has as I read your posts
Patoo is right, it is livable--yep "changes" every day one way or another.
Alaina, I will be in your business a minute---Check on your craving of Ice----I only say it, as I craved Ice bad, would rather have had ice than food--come to find out I was Anemic--once I got my Iron up I no longer craved the ice. This has happened 2 times and that "ice craving" was my 1st indication. We got to look after each other, if ya know something you think would help me, by all means--I want to hear it--Thank you please!!
Keep on keeping on.
Take care.
Linda C.
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Hello Everyone,
It is Linda Time!!
I had my 1st chemo yesterday(for this time)--Herceptin and Navelbine---It kicked my butt!!! Wheee, I hurt
from head to toe for "hours", it was the heating pad, motrin and the bed, all evening and I was able to sleep all night. Today was better, just thankful to get up and shower and make my bed, and I even threw dinner in the Crockpot---all these things are taken for granted and I know it does not have to be.
I will be going every week and hope it shrinks these tumors soon.
Wishing everyone the best---Take Care.
Stay Blessed.
Linda C.
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Ladies,
While lurking----I saw on Breast Cancer IV a post(I Talked to Stephanie Triple Neg), you may want to read it. We will keep Stephanie lifted to God.
Stay blessed.
Linda C.
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Praying for you Linda C during your chemo. Look at it this way, you got some rest! So, kick up your heels every day you can knowing that on chemo day you will rest. Really, hope it gets better for you.
Blessings coming your way. (going now to check on TripleNeg - thanks)
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Hey Ladies!
Linda-glad that the cancer butt-kicking is underway! Prayers and Victory backatcha! Hang in there!
Alaina- glad to hear that you are progressing and keeping your sense of humor.
God Bless all the ladies checking this. The smiles, laughs, faith and warmth on this thread are much appreciated.
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Patoo, Idomitable1, Thank you, thank you, thank you!!
Indomitable, I feel the same way you do about the smiles, faith and warmth on this thread!!! I like to come and visit as often as I can--because it feels great!! I appreciate all of you too.
Stay blessed!!
Linda C.
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Big Hey! everyone. HUGS and prayers for all. Enjoy your weekend. Will be thinking of you all.
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Thanks for the Hugs and Prayers patoo!
You have a great weekend too!!!
If ya was here, I would share this Lemon Cake I made, it has a Lemon Cream Cheese Frosting that is to die for(I think). That is something I enjoy doing is cooking--I do less since there is only 3 of us, compared to when there were 5--cooked alot when the kids were coming up. I still have my 2 guys and they enjoy my cooking. Just sharing
with ya.Love ya!!
Linda C.
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HI....I'm a newcomer...diagnosed as triple neg, stage 2a, no nodes....just found out on July 31..Ive been a basketcase every since....had 1st Chemo ..going for 2nd dose thursday. Very scared of the side effects again and this time loosing my hair..Tried several wigs, scarfs, and hats-no comfortable with any....Im a hair person and feel my appearance from the Chemo will be very damaging...also fear daily that if it comes back- will i survive, where will it come back, same breast, other breast, liver or lungs? its said triple 3rd neg cancer WILL COME BACK! I need to be around for my 6 years old daughter
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Alaina, craving crushed ice is a symptom of anemia, it happened to me
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Oh dershell, you have my heart. I'm so sorry you are going through this. It's only a few months so the shock, fear, uncertainty, etc. are very much in the forefront of your thoughts. If they become much more severe please consider talking with your doc about getting an anti-depressant. There is no shame in taking them as we need to get as mich help with this blasted bc as we possibly can.
Please continue to come back, post and read. You will find this board to be your biggest source of support. This is so very important as you won't feel so alone. You can do things here that you won't feel comfortable doing anywhere else - rant, cry, laugh, fall apart - we have been through it and will walk with you through it as well.
Just know that you can do it.
I don't know where you are located but if possible can you get to a local support group? Got to SistersNetwork.org to see if there is a chapter in your area. There's also Gilda's Club (name?) which may now come under the umbrella of The Wellness Community.
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Purple Toes & Blue Tattoos!
Good Evening Beloveds!In my quest for most things "normal" I took the leap of getting a pedicure on Saturday! It was great to spend time doing something I did on a semi-regular basis prior to cancer, with good friends Z & her Mom, Ms. C.
My feet were SOOOO cruddy, and in dire need of some TLC. The toenails on my big toes both had a thick black line across them (a gift from chemo), so I picked a nice dark purple color so the black lines wouldn't show through.
I keep looking down at my toes. And now that my left breast is gone, I can look STRAIGHT DOWN on one side! LOL!!!
Today I had my simulation for radiation. I got my AquaCradle made. That part was fun! You lay down on a bag filled with a warm compound that rises up around you and molds to your shape and eventually hardens. This "cradle" will hold my body in the same position day after day when I go in to get the radiation treatment.
Not so fun was the tattoo-ing part. I don't know how people get "real" tattoos! I got 3 little dots, and those pin-pricks nearly sent me off the table they hurt so much! Geesh!
Anywhoo, I got CT scans today so they could map out the angles they need for my radiation. I'll go in next Monday for verification, and hopefully start real treatments on Tuesday. I was hoping to start Monday, but oh well.
So while waiting in the docs office for one of my appointments earlier in the week, one of the "cancer mags" caught my eye. They had an article highlighted in it called "Sex & the Single Survivor."
First I had to search my subconscious to remember was "sex" was, and when I remembered, I thought, Hunh, yeah, one day, you're gonna have to date again.
Now dating sucked big hairy monkey balls BEFORE cancer, I can only imagine dating will be a beast of a completely different species now that I'm the Bald & Boobless Wonder!
*sigh*
I read the article with great interest however, and they had this fascinating chart; How to tell the Boys from the Men. Some of the points that stood out to me were:
You're Dealing with a Boy if:
* He treats you like a charity case who should consider herself lucky to have ANY man in her life
* He doesn't want to hear any details of your cancer treatment
* He won't commit to a relationship, after all, you might get sick again, and he couldn't handle thatIn the small snippets of time I've even thought about dating post-diagnosis, those three issues rose immediately in my mind to get me to STOP thinking about dating....EVER AGAIN! LOL!!!
I'm really not sure how I'm going to navigate those issues. All advice is solicited and welcome in that regard.
The article goes on to regale the therapeutic value of shopping for (and wearing) lingerie and ordering (and using) sex toys.
Much to the chagrin of my more trendy girl friends, I've never been one to be worried all that much about looking sexy via my clothing or shoes (or purses) LOL!!! I believe in comfortable shoes cuz limpin' AIN'T sexy and while stilettos look great on the right person, I would break my A$$ trying to wear them and walk in them. (yeah I know, they're not for walkin') Whatever...
I saw a flannel t-shirt/nightgown in a catalog that said "This IS my sexy lingerie!" and I think I'm getting it for myself. :-)
I fervently await the day when comfortable becomes SEXY!
As to the sex toys...all I can say is this. When asked if my biological clock was ticking, I responded "Nope, I took out its batteries and put them in another device!"
CTFU!!!
Night Night Ya'll! Alaina
*PS ~ but seriously...if you have some REAL advice for a single cancer survivor trying to find some meaningful companionship...I'm all ears (and one boob!) LOL!!!*
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Sorry Alaina, I can't offer any suggestions while your post has me ROFLOL and in tears. You are soooooooooooo funny - any man, REAL MAN, would be the winner in a relationship with you. Really though, I'm 60 and am totally happy with my single life. But that's me because I'm such an introvert and like nothing better than being home in my flannel jammies.
Hope someone can help. I do know there is a thread somewhere on this site for singles.
Again, thanks so much - I'm going to bed happy now after reading you. You are an asset to BC.o
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Alaina, I can't stop laughing. I love ya. I'm holding onto my port for a while cause I had to change Oncologists and had really sketchy treatment...missed two months between first A/C chemo and only had two Taxol treatments because my leg increased to 3 x its normal size and went totally dead. ( My Nerologist related that situation to my Type 2 Diabetes)
I'm almost ready to get my mole maping...sexy eh? My Radiology Onc says she has to make sure my breast chest moles don't get bigger because radiation has already made them larger. arrrrgh
I'm having a laughing good time right now watching Sherrie and Rita Rocks, new shows on Lifetime.
Please, prayers please, I'm gaining strength and enjoying walking more and more in the shadow of the tall buildings downtown. I just have to keep awake when I get back home.
Dershell, you sound like me last year except my tumor was much larger than yours. It was 3.5 cms, and node negative. My surgeon took 19 nodes because she was so sure it had spread to my nodes. You will get through this so Please keep the faith. It reads on this site that you are at tan early stage and I'm rooting for you .
60+y/o to me means going shopping again after being unable to enjoy it, at the Century 21 discount fancy clothes dept store on Chambers and Broadway downtown near our old World Trade Center. I look at all the clothes and lingerie and shoes and and and... I'm having more fun than I've had in years..
After having been on disability for other illnessness and unable to get around for a long time, I missed Mammograms for 4 years after my mom died in 2004...I just forgot ...so of course I couldn't believe I had another illness...I am the autoimmune Poster girl and thought I had a pass.
Anyway, I'm all over downtown with my hair out from under my baseball cap now that it's growing in grey and white and as yet uncolored . YIKES!! Henna is next on my list. .
SSDI sucks but I'm glad I worked those 30++ years and can get it. And I am SO glad our SS wasn't invested in the market. I would be in a big mess. Medical bills took my savings, my home and my ex, who couldn't deal with me and illness...I'm glad he's gone now. I think Elizabeth Edwards will divorce. It hurts to divorce a man you still love, but not as much as living with someone who doesn't love you.
I'm going to renew my NY State RN license next month...prayers are appreciated please...and see what's out there for my present physical abilities. There has to be something out there for me..I miss people so much I can have a 6 way conversation in my bedroom all by myself. Plus, since the Cancer is out of my body I feel like a new woman. YEAH!
I wish I'd had a moldable holding device at my hospital Radiology dept. I was in tears--bad joints-- more than once when they would try to get me in the right position to start radiation. It was Crazy Sexy Painful cancer in that hospital's Radiology department. arrrrgh!
If my BC comes back...and it had better not...God willing... I hope I can go to Sloan Kettering. I did my Clinical Cancer rotation years ago at Sloan and completerly forgot about itwhen I got Cancer .Of course I did have a Medicare HMO and don't think I couldn go there. No more Medicare HMO"s for me I hope and pray.
I'm sleepy now so please forgive all typos.etc.
nitenite
mina
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Hey Ladies,
I just have not been on for a few days and Wow---we got a lot going on!!
Glad to hear from everyone!!
dershell--Welcome, sorry we have to meet this way, hang in here with us, Yep we will hang with you!! Ask us all the things you want to know--we will have some answers. Your feelings are very real as to being overwhelmed right now. Feel what you need to feel. You have fears of the cancer coming back, we always hope it will not, it is real that it can--So you stand your ground in wanting to raise your daughter ---keep that in your mind, and Challenge the time, or times. I wanted to see my grandchildren grow up,(I was diagnosed 11 yrs. ago) They are 21, 20, 18 and 8--I want to see some great-grands!!! I plan to be here---My Surgeon said, "Linda we will live till we die", good way to think about it!! The technology and meds have changed for better, and there are a lot of Survivors around I say "Cancer does not always mean a death sentence"---follow that, with doing what it takes to stay here, and that could mean Chemo that we wish not to have to have, Radiation too. Wearing wigs--I hate the wigs!! You will have some stories to tell real soon.
I will be a 11 year survivor on Nov. 17 and it has been "a journey" with this Her2, I have had to start chemo again just last week--but I won't give up--I Love living--So I try to do that well. So keep us posted, if you get a chance go back in and read some of our past posts--this is what keep us going.
lovemyfamilysomuch--Hello and welcome!!
I too knew I was anemic by craving that ice---I had no idea--after I had my share of Iron pills it went away, but this happened 2 times to me. I say we learn a lot on these posts from others too.
Alaina--Lady you have me rolling!! Keep on keeping on!!! That is interesting of how to tell if it is "boy"---Yep, I would agree with that!!
bar62--Prayers for you---for every thing!! Hang in there!! I am a Licensed Mental Health Technician,(I think KS is the only state that recognizes that License) I just got it renewed just in case I may go to work. It was going to expire and I would have had to take a Refresher Course, now I am not trying to go to school, although I do wish I had gone on to Nurses training, I can't see it at 62, but I do think about it.
patoo--Hello---Stay Blessed!!
Indomitable---Where are you?? Hope all is going well for you.
OK--Linda Time---I had my 2nd chemo today, so far so good, I have not been asleep and I have been home since 5PM, Thankful--no pain. I do believe that on my jaws the tumors are shrinking, I got a lot of prayers going on, "Thanks to my on line family here" and family and friends, the nurse said the Chemo does work that fast--OK!!. I know if I held my head down it felt like it was heavy or something and it does not feel like that, nor does it look as swollen--so I am grateful to God.
Ok ladies it is 3:15 AM--I am just going to rest today and do nothing. Better get to bed first.
Ya take care.
Linda C.
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Thanks for your prayers...I'm going to treat myself to a laugh by going to see "Good Hair" produced by Chris Rock. I saw bits and pieces of it on Oprah and The View and think it'll make me roll in the aisles.
back soon:)Mina
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