Starting Chemo in December 2013

Jodi- have you ever heard of "Wonders and Worries"? I think it is through Live Strong (or maybe American Cancer Society). They provide free counseling for children whose parents have cancer. My 2 older children ( Grace is 9 and Sarah is 5) have had 3 sessions. It is the best thing we have done. One session she showed them a doll with a port. Then they made their own dolls and she sent then home with medical supplies ( gloves, syringes, etc. ) so they could give chemo to their dolls. They come out smiling after every session. Just thought if they have it close to you it might be something you'd be interested in for your girls. 

Holli

Holli, wonder and worries looks awesome. I checked out their website but they seem to only be in Austin. We have such great medical resources here in dc (I live just 10 minutes away from NIH and the National Cancer Institute) but I have to say that elsewhere support services seem so much more extensive/advanced. I asked early on about resources for kids, and got one pretty lame pamphlet. I have found some other good resources but only through my own digging and through the mother of a friend of my daughter whose husband was diagnosed with pancreatic cancer last year.

But I'm not complaining. I don't have to travel for treatment like Jodi and others do. I just think that there could be better support for families.

Jodi- I met with 1 surgeon before I saw my oncologist and we just didn't "jive" well. At first he said oh a lumpectomy then he did an exam and looked at some of my reports and said a masectomy..."we will just cut it off and throw it in a bucket and my plastics guy can be there if you want reconstruction..." honestly those were his words and he could not even use the machine to view the CD from the hospital. He didn't explain nothing to me and I was newly diagnosed. I saw him just before Thanksgiving and the office staff was waiting on my appointment to finish because they were having a luncheon. No one was at the desk when I left so I didn't even make a co-pay!!! I am just learning from here what I can but flaps, expenders, nipple saving...it is all spinning round and round. My oncologist is referring me to someone else but is hoping to get new scans because the tumor has shrunk but not sure about the nodes. The surgeon did say I could get home health care to take care of drains.

charusa - I 2nd what jackiek said - you need to be very comfortable with your BS and if you are doing any reconstruction you PS.  I really like both of my - both took their time explaining my options and the pros and cons of each option - both of the nursing staff were compassionate and warm - at this time you not only need great advice but you need understanding.  Find the ones that you gel with - and if you are doing reconstruction especially find a PS who can do all procedures, has experience and lots - has a good picture book of work he/she has done and that you are really comfortable with.  I love mine - he has a sense of humor and gets my sense of humor.  You will see you PS alot.    

Here is my funny PS story...  when the office girls called to remind me of my last appointment I said "I will be there with tassels on my foobs"  The girl laughed and said "oh that would be a first".   So this is how I showed up 

When I unbuttoned my shirt - the nurse laughed then said "stop - don't undress any further"  "Can I get the doc and the girls?"  I said "sure"  In about 5 minutes the whole staff was in the examine room.  My PS thanked me for bring a smile and laugh to the office for the day - ask if he could take a photo for his before and after book - for which I said "of course"  LOL    I love going to his office.

Linda- just love the pasties and tassels.  What a creative idea. 

Holli.- counting down the hours with you.   Hoping for an easy session for your last. 

Barbara.   8 days and counting. 

Jodi - just one more to go after this right? Thinking about ya!! 

You said your family is coming to stay with you for some of the time in Houston? I'm for there originally. Lots of fun stuff - museums, NASA, etc. Let me know if you want more info. Plus if you do decide on excursions - buy a city pass. It can give you good discounts on fun places. 

Holli

yea! Jodi, one more to go and love the wig! 

And Barbara-one more for you too!

Holli- tomorrow is your last chemo!! Yippee!

So excited for all of you. It is a great feeling. Like a huge weight has been lifted. I meet with my RO next 4/30. Hope to start rads middle of May, 6 1/2 weeks also. I had my usual down day today, 2days after taxol with aching and fatigue and bad tastes. But already feeling better this evening and I'm sure I'll bounce back quickly especially knowing it's my last week of chemo side effects!

Jodi your wig is awesome!! Wow!!

It is 1 am and sleep is alluding me. Ugh!! Not sure if it is the anticipation of my last chemo coming up in less than 8 hours or the steroids I took yesterday in preparation for it. Or maybe both? Thinking about taking an ambien. I don't use those often but this is nuts. 

Of course it may be too that I have a 9 year old basically on top of me right now. She gets really emotional a day or two before a chemo infusion but tonight she was inconsolable and begging me not to leave her :0(. Makes me so sad for what this cancer crap is doing to my family. Mess with me but leave my family alone!!!!

hi again girls, this us my Facebook post the day after I finished chemo. I hadn't shared my medical problems specifically on fb but decided to after I finished as it just seemed right at the time. So here's my personal journey with BC so far as I expressed on fb: (Lisa Ross Boyce)

"Ok well here goes, I should have done this a while ago but just wasn't ready to share what was going on. And sharing things on social media still feels weird to me. Many of you know of my journey the past 5 months and some may not. there have been subtle hints on my and others posts.
I was diagnosed with breast cancer on Oct 18, 2013. I have had lumps and bumps for the past 10 years that have been mamogrammed, ultra sounded, aspirated and biopsied. All have been negative or benign, just cysts. Well the last time some lumps were looked on US they still looked like cysts but this radiologist just had some kind of gut sense that we should do more biopsies. Was told it would probably be benign cysts again but just to be sure. I reluctantly agreed. Had the core biopsy on a wed and went about my merry way figuring it would be more of the same as prior years. Well one lump, suprisingly to all, came back malignant. This lump had been there for a year or more and always looked like a cyst. I was so scared. I was in shock. It was initially determined to be stage 0, DCIS. I would need surgery and radiation. Lots of crying, researching, sleepless nights, crying some more by both Bill and I. It was a small lump, 1cm and lumpectomy and radiation was the recommended approach. Had Lumpectomy 12/2/13 with 4 lymph nodes removed and biopsied. Pathology report was different than what was initially thought. It was invasive ductal carcinoma (IDC), stage 1, no lymph node involvement thankfully, but the it was grade 3 (aggressive) and the hormone receptors were negative, less common (15-20% of breast cancers are hormone negative) also called triple negative (estrogen-, progesterone-, HER2-). A more difficult cancer to treat and the common post treatment drug to decrease recurrence called tamoxifen won't work. This now meant that I needed chemotherapy as well as radiation. After second and third opinions (one of them at LIJ/north shore, where my sister Robin work as an infusion/chemo nurse(thank god for Robin!)) a plan was recommended. She was able to get me in to see a well respected breast medical oncologist. Had my third opinion up here in Utica and this oncologist recommended the same plan. 8 cycles of chemo, 1 time every 2 weeks. For those of you that are in the know of such things I would have 4cycles of adriamycin and cytoxin (A/C), followed by 4 dose dense cycles of taxol. So 4 months of chemo. Seemed like it would be forever. I was scared shitless! Having to have chemo made this cancer thing really real.
I started chemo jan 13. And now on April 21 I am FINISHED! It was tough, I felt like shit on many days. It was a roller coaster on my mind and body. I cried on the nights before having to go back. I didn't want to do it again. I would bounce back after a week and had a week of feeling better only to have to start it again. I have always been very healthy and rarely get sick so I hated this whole thing. Still shocked that it was me and I was going through this. My hair was falling out before the 2nd treatment so I had it shaved off by hairdresser that does this for free for cancer pts. A wonderful, understanding and sympathetic woman. Seeing all those curls on the floor was so hard. I couldn't look at myself in the mirror for weeks. I've beem wearing scarves, caps and occasionally a curly wig. My darling daughter said "ma, you rock the scarf look! You look great in them". But I miss my old self and will never again complain about a bad hair day or how bad my hair looks on a windy day. I now long for the feel of my hair on a windy day lol!
This has been a difficult journey, physically, emotionally and spiritually. Why me? What did I do wrong? What should I have done sooner or differently in regards to my health? Will I make it through? Will I come out on the other side a different person, a better person? I was strong and many days and weak on many others. I do not wish this on any person and I can't say like some do that I am thankful for going through this, I wish I didn't have to. But being that I did I have learned some important things. The most important is having good people by your side through every step. My husband Bill has been there with me through every test, appointment and treatment. His quiet yet unwavering support and love has been amazing. He was there with me through my crying jags and panic attacks. He would research information when he should have been working, he would do the grocery shopping, laundry and cooking when I didn't feel like it. My children, although they are not home (Lauren a senior in college and Jeremy working in albany) would frequently call, send texts and support to me in their own way. My sisters Meryl and Robin have been amazing and were there to listen to my fears and tears. And their surprise visit to me from 5 hrs away after my second chemo treatment left me with a smile for weeks. My friends and upstate family have been great. Food care packages were great, books and magazines to keep me busy, yoga partners, and the emotional support were unwavering. The cards that I have gotten have been a great reminder of the good in humanity. The other important thing is that I appreciate the little things. I remember talking a walk in the beginning of my treatment with Billy on a pretty cold day, bundling up my head and body and being cold but just enjoying the cold air on my face and legs and telling billy that "I'm cold, but doesn't it feel great?"(He didn't really get it lol) but it was good to feel the cold, to be able to walk, breath the fresh cold air and know that I will soon be inside and be able to warm up. It was great! I have learned the strength both physically and emotionally that I have and that I am still amazed with. I feel empowered. I feel positive. The prognosis is good according to the doctors. The chemo and radiation are like insurance policies, to make sure that any errant cancer buggers are gone. Recurrence is always a fear but I try to put it out of my head, on most days, and figure I did every thing I could to fight this with strength, wisdom, courage and grace. I continue to do my own research and question and present information to my doctors, as is my nature.
This has been long and if you have stuck with me I thank you. I thought I might look into doing a blog but just didn't feel like learning how to do something new. Chemo brain has been good to me but the focus just still isn't there.
I have finished my own marathon, triathlon, boilermaker (for my upstate friends) all in one. My body has found its strength I didn't know it had. The hard part is over. Radiation will be easier. I've had a smile on my face since yesterday.
Thank you to all that have lifted me up, and kept me in your thoughts and prayers.
I DID IT! I will get through the rest.
Lisa"

💕to all my BC sisters. May you all have a good week and weekend

sitting for the penultimate infusion. One more to go to the top  amazing my blood counts are all almost normal.  

Jackie-writing about my story was actually therapeutic. I thought I'd keep a journal when this "journey" started but just couldn't do it. It was too traumatic at the time and I only wrote in it a few times. Now that the first hard part is over I can put it in perspective. It actually took me a long time to put that post together. Not your regular quickie status update for sure! Actually missy gave me the motivation when reading hers. She finished chemo on the same day as me this week. You'll get there, because we can't make time stand still as we sometimes want it to. And this is one time we just want to get there as soon as possible. I'm now anxious about my hair coming in. It may seem trivial with all we've been through to worry about hair and how I look but it's the waiting that's hard, to get my life back and feel AND look normal. I barely have any, just some fine white fuzz, only noticeable when I look really close in the mirror, which I do multiple times a day, lol

You go girls!!

Jodi- have you asked MDA about any programs they may have for kids to help them deal with mommy having cancer? The husband of our children's minister has kidney and lung cancer and they have been traveling there. She said someone brought them by pamphlets and a craft to do with her children. Might be something worth asking about. 

Holli

yea holli!!!!! Another member of PFC club! And others to join soon! Hope it went well and that your side effects are minimal.

Jodi, have you asked American Cancer Society? I believe they have funding for lodging.

ACS - Patient Lodging

That is the link above. 

Jodi there is also a website called www.gofundme.com that i know some people have used.  I know it is very reputable and when you tell your story, people are very likely to share it and help you out.

Good Luck to everybody doing their last chemos today!!

Michelle