Starting Chemo in December 2013

kimie06

Hello my peaches.... ok.. where to start

We all remember my brothers passing, well its been a shit show, short of the long, they were very negligent in his care that day and malpractice is not out of the question, they have admitted the effed up and thats whats so damn hard.   Anyway................ Since he passed young and what he passed of my little family well me and my 2 boys, and my other 2 brothers have all had to see cardiologists, to check our hearts, they think maybe just maybe we have a connective tissue disorder, both my brothers aortas are enlarged one will need surgery very soon, that is what my brother died from a dissecting aorta....    anyways so now we wait for more genetic testing, we are being referred to the IWK in Halifax, its just a much larger center.  Cripes as if things havent sucked enough, but.... had this of not happened to my brother, my other brother wouldnt realize the condition his heart was in nor would we all be followed by the cardiologist, mine looked fine on an echogram but he still wants to follow me as this condition hes looking for can show up at any time, there are a few other contributing factors here as well, for instance for no reason at all my bowel perforated in 2010 resulting in a colostomy for 7 months and I was very, very sick,  my brother the one that passed had a very similar experience last year, so to them it is all very suspicious.  

Im having some scanxiety .. dreading the chest ct that is coming up in a couple weeks... to check that damn little thing I am praying is a grauloma.  First mammo since this shit storm is in January

Well I am feeling great down 35lbs and 50 inches and not stopping !! I dont have a goal I will just wait and see where I get

DJJ ~~~~~ love that you have met a charming hard bodied man...lol  no seriously thats awesome

RHGSR -- hoping you are feeling better

Michelle --- LOVE THAT COSTUME !!!  and its all going to be ok.

love to all

Mikesgirl17

I'm sorry Kim.  Hopefully they find that you have no heart problems.  You deserve a clean bill of health!  DJJ....He sounds like a keeper.  Good for you!

jbokland

please enjoy this as much as I did.  This lady is my hero !    I really laughed!

Article: http://huff.to/1tdsbeA

Lisaj514

This article came up on my fb from Susan g komen page. We need each other...on a cellular level it says. Also mindfulness, meditation and yoga. Ok I'll keep working on it.

"For the first time, researchers have shown that practicing mindfulness meditation or being involved in a support group has a positive physical impact at the cellular level in breast cancer survivors."

http://www.sciencedaily.com/releases/2014/11/14110...

Jodi040812

Kim sending prayers!!  

So, my next scans have been ordered.  It has been a month since I got the first CT and scans done and now I know the date I'll be going back.  I know this will get easier with time, but just makes me kind of sad that this is the new life.  I refuse to let the anxiety get to me until the day of the test this time!  I won't let it cloud my mind because really what good does it do.  Whatever will be will be in this scenario.  It is not like we can all eat a certain thing or workout to keep it away.  I'm swallowing my daily pills and honestly I feel empowered by them!  My therapist at MD told me months ago that when I take that pill each day think about how I am fighting cancer.  She said it is like my daily chemo and y'all that really clicked!  

On a lighter note- I have enjoyed watching tv again lol!  I missed so much last year.  Anyone watch the Goldberg's?  I swear that show is hilarious!!!  And- holidays!  Missed all the big fun last year, but not this year!  My Christmas trees are up already lol!  I was just so excited to be celebrating it healthy this year.  My friends came over last year and decorated my tree.  This year- all me!  It was fantastic.  I love the way the house looks with a tree. 

jbokland

I love the Goldbergs!  Very funny stuff!

I have my recon. Surgery scheduled Dec 4!  Can't wait to get through this 

RHGSR

Today had an awesome thing happen and a heart breaking one.

Awesome - we had a home visit from PINK HEALS Hays County. Huge pink fire truck pulls up to the house with sirens blaring. Gave me hugs and pink roses. The kids got to sit on the fire truck. It was like a pep rally for me!! It was so great. We have been in such a slump with all the set backs I've had. So this was an amazing gift!!

Then a few hours later I found out I lost a friend to this awful thing called cancer. Here is some info on her and how I met her. I had only known her since April but she impacted my life in unbelievable ways.

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just found out my friend Chris I met at HEB passed away on Tuesday. Her funeral is Sunday. I'm heart broke. I know she is in a better place and pain and cancer free. But it still hurts.

I wrote about her in one of my blog posts and mentioned her at CBS. I was praying on the way home from one of my check ups during chemo after talking to my doc about recurrence rates and survival rates. I had on my head scarf when I stopped at HEB. She approached me out of no where. Never met her before. She prayed with me and told me that only God knows how long we have on this earth not doctors or statistics. She was truly an angel. I got to know her a little more over the past few months. She was diagnosed with ovarian cancer in 2011. Fought it 3 times. She always had a smile on her face. She was 54.

chicopeach57

Holli - that truck is awesome! Had tears in my eyes looking at the kids hanging off the back, the awesome guys in pink and how pretty and strong you look. Then I read about Chris and just cried. I feel that to honor those I need to pay it forward.

RHGSR

Thank you Chico!!

The PINK HEALS truck is going to be at the college football game here in town tonight. I love how they keep it local and any funds they raise are kept local as well. I'm going to go and ask if I can sign it agsin in remembered of my friend Chris. I know she is pain free now and I only knew her a few months but I'm devastated. I was just starting to really get to know her. The last time I saw her was for a coffee date right before I went to the hospital in October. Been crying since last night. Not sure why I'm so upset.

RobinLK

Holli, sorry about Chris. I don't know what it is, but my "Thursday peeps" from treatment are important to me in the same way. I panic if someone isn't there for a couple weeks. Rejoice when we all make it in for treatment. I know not all of us will survive cancer and I think that is part of the strong attachment. It feels like a combination of love, family, survivor's guilt, empathy, and PTSD all rolled into one. I feel that cancer creates a quicker, tighter bond...in a shorter amount of time. Prayers for you and her family

Jodi040812

holli- I am so sorry about your friend. Praying to her family. Love the pink truck. Amazing to think where we all were a year ago! I had not been diagnosised yet! My week is this next one. I am celebrating with all of you! Love all of you so much!!

Today! Big game lol! LSU v Bama which is always fun! Here is LuLu in her tiger colors!

Lisaj514

lulu's got attitude. Just like her momma I think. Love the tshirt too.

Holli, sorry about your friend.it seems that everywhere I go now I meet woman that have had breast cancer and everyone of these women have had recurrences or a new primary. I see a woman out somewhere with a head scarf or ball cap over a bald head and I feel a kinship with her and we start to talk (where were these women when I was bald, I felt like I was the only one). We start talking and she tells me it's her second go around. My heart sinks. That puts me in a scary place. I know we've all thought it at sometime and I know we can be honest here...but we know that some of us will get a recurrence or new cancer...just don't know who or when. But like we say, just have to enjoy today as we don't know what tomorrow will bring. ...sorry hope I didn't bring too many down but this happens in my mind at night.

Love you girls. Let's not loose our connection here, and let's keep thinking about getting together somewhere, sometime. The crazy holiday time is coming as well as cancerversary's of diagnoses, surgeries, start of chemo etc. We will see this new season with clearer eyes, new hope, a new enjoyment of all it brings, a new and a different appreciation of so many things.

Hope all are well. Please update on those we havent heard from in a while

Crazywabbit

sorry, haven't had a lot of free time to post lately but I do log on nightly and read the posts.

My husband is not adapting the the Nursing Home too well. He has a lot of aggression outburst when he wants something and does not get it immediately, all past of the Huntingtons. He still blames me for abandoning him there. My guilt is slowly resolving since I see even there with trained professionals how difficult his care is getting. I just could not continue to do it at home. If I knew I had 20 more years to live my life I would give up a few more years and struggle with his care at home but like Lisa said, we just do not know what is in store for us and need to start living each day as it comes. My son from CA is here for 2 weeks before starting a new job Dec 1. So nice to have his company.

My good news is that the CA 15-3 is 1 point lower then last year. It was done before my surgery so I will never know what my true baseline without the breast tumor is but going down is still good. Liver test all normal. Mammo/US on the 19th. Staring to get anxious about that since I can not tell if what I feel is scar or a lump in the lumpectomy site. Hope it is just scar. Really going to push for a PET scan this year.

Kim for Canada- great news about your Neg BRCA test. Hope the heart testing is neg, good your brother is getting treated before something could happen.

Michele hope you are healing well from your surgery

Denise, aka Shades of Gray, keep us dated on Mr Hard Chest. We can live vicariously through you.

Holli, what a great treat with the pink fire truck, glad you are getting the steroids decreased and feeling better.

Love all the Halloween pictures, kids and adults and Jodi's adorable little girl

Amazed at the hair regrowth so far on everyone, mine is still so sparse on top. I need to use white hair powder spray to camouflage the pink scalp showing through.

To all those who just had their neg Mammos and NED diagnosis. WAY TO. GO!!!!!

Lisaj514

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Good to hear from you barb. Difficult with your husbands condition, can't say anything more, it's just tough

Hope I didn't bring anyone down with last nights post, sorry but you girls know.... Feeling more positive today. Kids were home for weekend, that was nice

missy6758703

Hey beautiful ladies! I am home from the hospital and everything went very well.....limited pain the first couple of days from the block they gave me, but even when that has wore off now the pain is tolerable. Haven't taken any pain medication since yesterday, just tylenol. My PS took out half the air out of the expander before i flew home yesterday so right now, it looks absolutely ridiculous!! Definitely one of those "one of these things is not like the other" kind of moments when looking in the mirror! I seriously just started laughing the first time I saw it. I go back next week to have the air taken out and the saline put in and hopefully get the drains out. They called with the final pathology report and there was no evidence of any type of cancer in that side...what a relief! I feel in my heart i have done the right thing....this pain is minimal for all the mental anguish I had been feeling having that breast still there.

Pretty tired so going to take another nap, just wanted to let you all know i was doing ok and to thank you all for your prayers and well wishes!

Love to you all....

MIchelle

Crazywabbit

so good to hear everything went well and the good path report. Eventually you will be "even"

Lisaj514

Michelle, your my technique seems better than the usual from what I hear and see. The use of air, no TE, minimal incision and a vertical incision and it looks more natural even at this stage., (well of course not right now) Of course I'm not talking from experience as im a "lumpy". Do you need to do an exchange eventually? why is this technique not used more often? Also congrats on a clear right side. Huge relief I'm sure

missy6758703

I talked to my PS about this technique, and he said that he has had so much success with it because with the breast being so lightweight after the surgery with just the air in the TE that it makes the healing process easier. I will go back this coming week and they will use a big syringe and suck out all the air in the TE and replace it with saline. The tagaderm acts as a makeshift bra and holds the shape in place....he does not have me wear any sort of a bra for about a month. Another good thing about doing it this way is because it is so lightweight, he can fully expand it with the air right away and then when he puts in the saline, he will only do it one time and i don't have to go in for fills. I have had good success with what he has done.....just hope he plans on evening things out! ha!

kimie06

https://www.facebook.com/video.php?v=7481603718726...

my goodness what an ambassador for this effing illness !!! she fought .. but didn't win, we have a lot of friends in common however I never knew her, sadly she passed just the other day, too young and full of life, she was a dr in the canadian military, this just makes me so mad !!!! Lisa I too think about it all too often, I hate that cancer has made me feel like I have no control over my body, HATE IT

End rant for today....

Mikesgirl17

Michelle that technique is amazing. Okay, here's my rant. Went to my Uncle's funeral today. (Skin cancer that spread to his liver and brain.) He was 80 didn't suffer for too long which was a blessing. My sister text me and said she needed to tell me something and couldn't tell anyone else right now. She lives out of state so wasn't at the funeral. She found out today that she has melanoma skin cancer. WTH? Her husband had pancreatic cancer last year at this time and almost didn't make it. She is 52. I feel like she will be okay, but who really knows? They caught it early. (She is checked every 4 months because she is high risk.) I am so sick of this cancer crap! She is seeing a surgeon tomorrow which is good because they are moving fast. My mom and dad are heading to Florida for the winter Thursday and will be stopping in VA to stay with my sister for a few days and she is going to tell them then. I'm worried about what the stress will do to my mom. Please pray that they can get ALL of it and that my mom takes it better than I think she will. Thanks ladies for being here for me. Kathy.

RHGSR

Michelle - so glad things came back clear!!

Barbara- good to hear from you. I know that's a difficult decision with your husband. But it sounds like you have a good perspective on things.

Jodi - those pictures are beyond precious!!

Mikesgirl - are you the one that had the cute pouches for ice packs for Taxol? There is a lady on the Hill Country Warriors board that is asking about them. Praying for you and your family. Cancer just sucks and there is no other way around it.

I'm sorry if I've left anyone out.

Anyone heard of Plexis Slim? Anyone gone gluten free? Anyone use essential oils ? Anyone ready for me to post another long blog post? Anyone tired of all of my "anyone " questions :0)

Holli

RHGSR

Pink Heals

posted by Holli on Monday, November 10, 2014

As you all may know, we have been fighting cancer, it's treatments, and side effects from the treatments for a year now. Ronnie told me that he was mentally prepared to make it through June, but he hadn't prepared for after that. Neither one of us prepared for the lung issues and set backs. Like I said before, December 12 this year was supposed to be my last surgery (it is also Ronnie's birthday. And before cancer ever entered our lives , my graduation month from Texas State). Now we will be heading into our second year of cancer "after effects" with 3 more surgeries looming ahead.

Many of the ladies on my online support group that started chemo at the same time I did and radiation at the same time I did are now getting their final surgeries. I'm happy for them but a little envious too as I want to be wrapping up the physical healing so I can begin the mental / emotional healing. It's strange, but it's difficult to accomplish both at the same time. I'm in limbo until I'm able to do so.

I'm often asked if I'm cancer free. Well, I'm not sure. The lung issues, to me, have taken precedence over everything else. My medical oncologist told me he'd consider me cancer free. I asked "what next" and he said... "Now we wait".... In other words we "hide and watch" to see if it comes back. From what I understand the first 5 years are the most crucial. But other than the chest cat scans for my lungs, I really haven't had any other tests to see if I am NED (No Evidence Detected). I want to believe I am but I want proof. I'm afraid...

I have several follow ups in December so I plan to ask a lot of questions.

At the risk of sounding like a broken record... We are so very weary. Still dealing with financial/insurance issues. Still dealing with steroid withdrawal and pain. Still dealing with Ronnie's health issues. We are weary.

Then when I start to think about how we need to change our lifestyle. I get so overwhelmed. I have to help myself and my family change how we are living. We want to keep cancer away. How we eat, our activity level, our stress level, getting enough sleep all needs to change. It's enough to stress me out ... Only I would get stressed out thinking about ways to try and not get stressed out! :0)!! Thank you to 3 wonderful ladies who have gently spoke to me about different natural ways to live (Mardee, Shalom, and Tracy). I thank you for allowing me to ask questions but also for not overwhelming me.

So... As you trudge through all of that mess... You will understand why what happened last week was all the more special.

On Friday November 7th 2014 I received an amazing surprise. With sirens blaring (my poor neighbors ... Hee hee) a red fire truck and a pink (yes I wrote pink) fire truck pulled up to my house. About a dozen people, including two fire men in pink fire uniforms, come up. They all hug me and hand me pink roses. I get to sign the pink fire truck named Bailey. It is like my very own pep rally. It is truly amazing. At such a down point in this journey it was a blessing and such a spirit lifter.

The volunteers who are a part of this organization are incredible. You can see in their eyes the joy they receive in giving back. They genuinely care about the cancer patient , survivor, caregiver, loved ones...

What I truly appreciate is that all the funds raised for the Hays county chapter of PINK HEALS stays in Hays county. It stays local!! It is the community helping the community. It isn't buying a pink ribbon key chain that says proceeds go to breast cancer research only to find out that only a small percentage ( or in a small amount of cases none at all) actually goes to support breast cancer. Pink Heals is the real deal.

If you check out their face book page Pink Heals Hays County, You can see the videos of my home visit.

https://m.facebook.com/pinkhealshayscounty?tsid=0.927028336096555& source=typeahead

If any of you feel called to donate to any organization regarding cancer, I can personally vouch for 2 and PINK HEALS is definitely one of them. Look them up.

Thank you Pink Heals for all that you do! Thank you for making an ordinary Friday afternoon something Extraordinary for my family and I.

I'll be posting some pictures too in the photo gallery.

Holli

So he said to me, "This is the word of the LORD to Zerubbabel: 'Not by might nor by power, but by my Spirit,' says the LORD Almighty.

Zechariah 4:6

33 "I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world."

John 16:33New International Version (NIV Edit

kjfromca

Good morning ladies -

Just catching up on your posts. I was at the coast with my DH and some friends crabbing last weekend.

Michelle - What a great surgeon you have. I wish mine would have used this technique. I will continue to pray for a speedy recovery for you. I have to wait until at least March for my exchange surgery.

Oranje - Glad to hear you had a clear mammo....Whoo Hoo!

Kimmie - Great job on the weight loss..... I will continue to pray for you and your family.

Jodi - My niece goes to BAMA.... Lol..... Love the cute pics, thanks for sharing.

Barbara - CA-15 ? Is this something they check with a CBC? I am so sorry to hear about your DH, but round the clock medical care is impossible to do on your own, especially when you have to be able to move and restrain someone who can be violent.

Kathy - I will be praying for your sister.

Holli - Pink Heals fire truck - AWESOME.... Regarding diet and exercise. I highly recommend walking at least 45 min. daily if you can to start (I do this before breakfast, heard it burns more fat???). I would recommend that you see a holistic med doc or a dietician (Someone who deals with cancer patients). Our reg physicians don't know crap about diets and we all have different dietary needs.

Hugs to you all, have a great day.

Kim

oranje_mama

Kimie - sorry to hear what your family is going through and that mistakes were made in your brother's care. I'm sure your whole family is ready to shut the door on 2014 and start a new year!

Mikesgirl - did they catch the melanoma in a routine skin check? so sorry about your sister. feels like an effing epidemic!!

Holli - love the pix, and just love the idea of TX firefighters in pink . I bet your kids loved this too!

Holli and some others have posted about making lifestyle changes. I've been trying hard too, and feel like my changes are starting to become habits. My advice is to start by changing one thing. Gain some confidence with that,and then add another.

Day after LX in May, I weighed my highest weight ever (well, except for being pregnant). I was exhausted and weak, felt at least 2 decades older. I started by walking, every day, for 20-30 minutes. I also started on the 5:2 fasting diet. (Basically, 2 days per week, you eat very restricted and the other 5 you eat whatever you want). Later, I also cut out alcohol during the work week. Then I moved toward eating healthier by having at least one vegetarian meal and one fish meal each week. In September I started working with a personal trainer. Two weeks ago, I added swimming back into my schedule once a week. I'm down 20 lbs from my highest weight in May, and below where I was at diagnosis. It's taking a long time, but I am definitely starting to feel stronger. When I write this all down now it sounds like so much, but one step at a time it was not so daunting.

Mikesgirl17

My sister went to see the surgeon today. He thinks they can get it all in an office visit with a wide excision. Praying for clear margins. They will be giving her a chest x-ray to see if it's anywhere else. I would want more than a chest x-ray. They don't think she needs chemo or rads. They caught it early. She's high risk so she gets a whole body check every 4 months. Thanks for the prayers!

Crazywabbit

Kim the CA 15-3 is a blood test for a tumor marker that is fairly specific to breast cancer. It goes up if there is metastatic disease. Can be followed with treatment. That said glad mine went down 1 point. And is right in the middle of the normal range.

Kathy sending wishes and hope to your sister thatthey can get it all in one surgery.

I am trying make better diet choices and pushing the walking. I have lost about 30 lbs from my highest weight at diagnosis, I regained about 8 pounds during chemo but have finally lost that so now back at -30. Really need to lose another 20-30 lbs. so far I have turned into a stress non eater, always was the opposite before this. I have a whole closet of nice clothes upstairs that I want to fit back into.

DJJ

I've been so busy, I'm trying to catch up! I closed on my house and have been busy getting a contractor to get things done before I move in. I move in on the 22nd!!! I'm coming to the end of the semester for my 3 graduate school classes so papers are due! and I have to squeeze in time with Rock Hard chest guy. Things are going good with him. I'm just taking it for what it is and if goes somewhere then it does if it doesn't.....well I'm cancer free so not much can really get me down :-)

Michelle, How are you doing after surgery? Your picture is gorgeous! It means peace of mind! YAY! on the good path report!!

Lisa, I sometimes go there to. I recently met two (separate occasions) women in chemo. When I said something to them they both had been in chemo before. It threw me into a tizzy. But took a deep breath and repeated "I choose not to worry about tomorrow because it robs me being present and enjoying today". Every time I feel the fear creeping up I play mind tricks on myself. I push it out of my mind and I look at the trees or the sky and think how lucky I am to be here for however long that may be and I am going to enjoy every second of it. It's hard to do sometimes but it works. Lately I've been using a handsome man as a distraction :-) That works too!

Mikegirls, I hate cancer! Your sister is in my thoughts.

Kim, your crabbing trip sounds wonderful!

Jodi, love the pics.

Holli, I love the fire truck. I'm so sorry about your friend.

Kimmie, That's terrible about your brothers treatment but it brought the problem to your family and now his life is helping yours and yours family. It's his gift to you. What an awesome brother!!!

Oranje - Clear mammos rock!

I hope I didn't miss anyone. I was so far behind.

Lisaj514

nice to hear from you DJ. Ya, I'd say you are busy with house closing, moving, graduate school and mr rock hard and I assumeyiu are working too? What are you going to school for?

Effexor question, started on Sunday. Mo prescribed after I told her I sleeping poorly with 2-5 hot flashes nightly. Also concerned about taking ambien regularly (take 1/2 of a minimum dose 5mg)I've slept poorly for years. Also take melatonin, occasionally valerian root ( when not taking ambien), sometimes benedryl. Nothing gives me good sleep for longer than 4-5 hrs. Well first night on Effexor, no hot flashes...none, but also not much sleep either. Toss and turn starting at 2:00, then little short sleeps with short dreams (not the good restorative sleep) until 6:15 when I had to get up for work. Also got a headache at night, not sure if from poor sleep and anxiety about not sleeping or SE from Effexor. Same thing happened last night and headache was worse but diministed after I was up. She only prescribed it for night 37.5mg. Anyone else get poor sleep and headaches at night with Effexor? I thought I'd sleep better with no hot flashes but still not happening. Also started a new job Monday and its 7 days of orientation (that in itself can give one a head ache), so that and my monkey mind ...ug

Crazywabbit

Michele, thinking of you today with the weather reports of cold and snow in ND. Good time to stay indoors and heal. Continued wishes for a good recovery.

Lisa glad the HF are better and hopefully the sleep will improve also. Good luck with the new job

DJ you are really busy! Keeps your mind on track.

oranje_mama

DJJ, you are busy! congrats on the house!

Lisa, 7 days of orientation?! At a certain point, seriously, no one can "orientate" any more! I hope that you start to sleep better. Keep us posted.

I have recently been experiencing a couple of things and wondering if they are Tamoxifen SEs . . . terrible skin breakout on my face (seriously, I have never seen it so bad). I don't know it's because of a change in weather to cold dry air or what. And foot cramps. The debilitating kind where your toes are frozen in an uncomfortable weird position. Anyone suffering from these things? Any tips?

Friday is my next-to-last Herceptin infusion!!