Starting Chemo in December 2013

wishing Jodi the best, I have been reading her post on FB. LIsa so sorry about your sister, this disease really sucks.

I just treated myself to a new car today, put a deposit down on one that I have been I have been dreaming of. I figure I need to treat myself to a 2 year surviving present. Hope to pick it up on about 2 weeks.

Barbara, good for you! Post some pics!

Michelle, I hope you can get your BP under control. You will love Texas! Maybe we can get together if you make the move.

I hope to be moving about 15 mins away from where i am now, in the next couple of months. Found a cute little house, so am working on getting mine ready to sell, this week-end. I'll be down-sizing, so will have a lot of stuff to get rid of.

I don't have FB, so if Jodi doesn't mind, pls keep us (me) posted here, whoever can. I hate this for her.

Have a great week-end, ladies!

For FUCK sake......My heart is broken for Jodi, Jodi if you read these messages know that we are in your corner always cheering you on, I hate this effing disease.

I have a follow up mammo coming up this month, keeping an eye on that scar. They seen some micro calcifications that they told me not to worry about, that they just want to have a peek, how do you not worry, how do you not worry about every bloody ache and pain that you have.

Lisa so sorry about your sister, she is lucky to have you.

I am currently doing my second clinical for nursing, and its going well, I have found a career path that I really do enjoy, here's hoping I have many years to enjoy my new road.

hugs girls xo

This was the most recent update.

Jodi is Out if surgery. Much shorter as they only were able to do he front due to aggressive nature of the tumor on C4. The tumor was wrapped around her spinal cord and arteries. They removed about 95 percent of it and the rest will require radiation and possibly more chemo. C5 had more damage than they thought. But they were able to align her which should help with the pain. Radiation to start by Monday as the surgeon felt the tumor would grow back extremely quick if they did not move quickly.

Robin, thanks for the update.

Jodi, you are in my prayers.

officially deported. The surgeon did it in her office. Just some lidocaine and a few tugs and it was out. It is now sitting in a plastic cup on my dresser. Bigger then I thought it would be. Glad to be rid of it

Oh my! Just saw the updates on Jodi and I'm devastated for her and her girls. Praying in the short term that her mobility returns post surgery and then strength for her upcoming trials! I also wish we could help. Maybe there is something we Chemo Sisters can do. At least she is at one of the best cancer hospitals in the country.

So sorry Lisa about your sister. Isn't that weird? 2X same family, but BRCA-. There is so much unexplained with this effing disease. I'm sure you are a great strength to her having just gone through this.

Hearing about Jodi really puts my concern that I posted about back in perspective. Mostly, it's annoying. I've been bleeding/spotting for 5 weeks straight now. I wanted to try to get into surgery before our move but timing didn't work. So, I've pushed surgery off for a few more weeks. I'll be having a D&C, hysteroscopy and uterine biopsy; and doc will try to drain/remove both cysts laproscopically. I'll have another U/S before the surgery - we'll see whether the cysts are resolving on their own and doc will give me a better idea of whether it will be possible to save the ovaries. Right cyst is 5 cm, and doc told me that it might not be possible to save that ovary, but hopefully I would still keep one. I'm still not 100% confident with this doc (she is only 2 years in practice after her fellowship and she seems so young/inexperienced!). The good thing about the delay is that I was able to get into see a top gyn surgeon here in DC, so I'll see him on April 12 for a 2nd opinion.

Also, wanted to make sure those of you on Tamoxifen know this: apparently, Mirena IUD because it is PR only helps to keep the uterine lining from thickening. My onc okayed Mirena for me, even though my BC was +++ (but only weakly PR+). I have to have my current IUD (Paragard) out anyway; after the surgery, I'll have the Mirena placed. No one had mentioned this to me before now - thought I would put that out there!

There we two groups I had to tell that I dreaded...my girls and y'all. For now, I am not telling my girls. If my oldest ask me, then I will have a talk with her, but I do not want to cause complete emotional breakdowns daily over this news. Here is what we know and the plan:

It was my neck. Not sure if it has been there since I started complaining about it back in the summer or not, but the doctors were surprised I was walking moving whatever. I'll tell you the whole story not to scare you, but maybe it will help somehow.

July 2015- Horrible neck pain and into shoulders with no muscle control

Sept- MD Anderson visit only because of neck/😳

Scans and X-rays come out clear. However X-ray did not show whole neck only c7 below. Back at md in October and this time have pt scheduled. Again declared all clear. January reports come the same and again all clear. Neck pain still there and still brought up to every doctor😳! Chalked up as s side effect from tamoxifen. Also have had regular cycle since Jan it is now March.

March-pain still in neck hoping it is from extreme weather and stress. We did not flood. So many did and neck getting super mad at surgeon with lat flap thinking he screwed up.

in Houston, Wednesday night I had a MRI and the final result was a compound fracture in my neck involving then C3,C4 and C5. Also showed two more spots on spine. Lots of tears that trip Down and rage next day. I have had two mri scans, ct brain and another ct chest stomach liver today. All the rest have been clear.

So now:

I had surgery on Friday removing 95% of tumor and the had to realign my neck and add some netting and plastic forms too. Recovery has been great but considering I was moving ins before, I had faith it would be ok. Dr believes radiation will kill remaining spots without issue. Now we just watch for next target. I will get a shot once a month to shut down my ovaries.

Delimma is- md messed up.

I should have hD a neck X-ray in sept, October and Jan. It should have never stopped at my lower neck. We have two lawyer friends who took it upon themselves to start researching this. I don't want to bland anyone but if a simple X-ray would have saved me from neck surgery or more time here I need to call them out. Even my local er hospital who didn't order N X-ray in August should have done so! I still want to be treated at md but wrong is wrong right? What would you do?

I guess the clock is ticking for. ME now, I want to things with my girls and take lots of pics. Of course I am praying this is it the big reoccurrence and they can beat and contain it.

Til then....just keep swimminsg

Jodi,

Thank you so much for posting. I know that wasn't an easy thing to do.

Do you have any of your family with you in Houston now? How long will you be there, or do you know? If I am being too nosey, pls don't feel obligated to answer!

I pray that the surgery gives you some much needed pain relief and you kick this crap to the curb for good!:)

((HUGS))

Terri

Jodi, you have been in my heart and prayers daily. Thank you for coming here to share with us.

I know MD Anderson is top notch, but I would be 2nd guessing everything, if it were me. I would find it difficult to trust them again.

If you do look into other options, CTCA is here in AZ and Mayo is also. I have 2 spare bedrooms and vehicles for transport. I am retired, so appt times could be whenever. I know it is further away, but there is room for your family. Please consider it. A second opinion, even if only to MDs treatment plan, could be all that is necessary.

Love you kiddo, keep swimming!

oh ladies thank you for thinking of me! Yes, I have had the worst news. I have digested it now, and I tell you I am so lucky in two ways. One, that the mets stayed in on location and did not make it to an organ especially since the pain started in July! And second, that I am walking since I had basically fractured my neck! This is the first time I have been in this site since I got dx again. My DH told me yesterday to please get back on because y'all were such a support. I hate to be a reminder to all my friends here that this happens to some. He wants me to join the bone mets group, and I am so scared to do that, but they have advice just like y'all do for me. I'm praying that it stays put, and we can get it. Pray for my girls. They are my everything, and I need more time with them especially Lulu. I'm tough, so I will fight! I want to make a shock happen by beating this somehow even if for only 15 years. That would be amazing. Thank you for all the prayers and support! I pray for y'all as well

I was so medicated in that post above, and it was so new. I am doing good. My neck and shoulders are doing great. I will dance again! Please do not let my situation bring you any stress or anxiety!

Jodi, thanks for the update! I know you'll do well. Vent away and share whatever news you want to. That's why we are here:). ((HUGS))

Hi ladies! I've missed you!

I Kind of left the boards because it seemed like everyone was moving on and I just couldn't get well.

I felt like... Well... I didn't want to hold anyone back.

Jbokland, crazy rabbit, Kimmie, robin, Jodi, keepthefaith,I could go on and on...

It feels so wrong now that I haven't been here. Just reading your names and I just have all this love for each and every one of you come rushing back.

Jodi... What's going on??!!

I just had some more reconstruction done this past December. But I'm having trouble getting the lymphedema down enough to where you can see what the plastic surgeon did.

So I'm not sure exactly what's going to be done next. I know I will need more revision before I even begin to think about nipples.

In other words this has been a very long and drawn out process for me. Going on 2 1/2 years now.

My right lung is scarred due to the radiation pneumonitis. And they just found a new nodule which may or may not be "just due to inflammation". So that's a little scary.

My family is doing great. I had to put my older two children in school this year since I was just not able to homeschool them anymore. And my youngest goes to school two days a week. He is now four.

I graduated from college this past December with honors! Extremely proud of that accomplishment. Seeing as I continued to take classes all through my treatments.

PM me your email address, I can send you an invitation to my private blog.

Hollie, congratulations on your graduation. Kudos for keeping up with your classes through all the rough going.

We really have a true sisterhood here, caring women of strength. Keep stopping it is good to hear from you.

Barbara