Starting Chemo in December 2013

Holli - hey fellow HS mom!  I do wish I'd known you when I was first diagnosed.  I was feeling so overwhelmed at the idea of keeping up with the girls' education in the midst of treatment, and no one to talk to about it who knew just what was on my plate.  (except my husband, of course, but sometimes we all need those girl talks!)  No great answers from me, either, but thanks for sharing back, and I'll pray for us both.  It is just plain hard sometimes.  

Lisa - thank you for your supportive words.  They are balm!  I do have equal respect for what I hear you all juggling - some with jobs, and in-law issues, and family issues, and extra medical issues, and insurance problems… wow.  We will all never forget this year, it will change us forever.  

Robin - sorry you are facing surgery again.  It is always hard to feel like we are not moving forward, as we have that timeline in our heads and we cling to it!  Hang in there, sister!

jbokland - the only port I've had removed was an infected one, so it was the most painful thing I've ever experienced.  HOWEVER!  I'm not fearing having my current one removed, because it sounds very simple normally.  They use local anestesia (sp?), little shots to number the area, and do pull it out right there in the office.  I've not heard anyone complain of pain.  

keepthefaith - congrats!  Keep us posted how you are doing.  We will live through you until we get there!

Mary

Kim- my MO is getting me set up with a psychologist that had worked with BC patients. I hope my insurance covers it. I'm starting rads but having trouble dealing with the end of chemo and start of something new. Heck.... I'm having trouble dealing with all of it. I wonder if it's because I've had a 3 week break since chemo. Since DX in Oct. things have moved so fast. Maybe everything emotionally is just now catching up. 

Macintx- I also did DD Taxol. Your SE sound normal. I had terrible joint and bone pain. Even had a reaction to #2 infusion. But to me there didn't seem to be much change in symptoms. The only thing that got more pronounced was the tingling in finger tips and feet. But I  now 3 weeks PFC and it is decreasing. 

there have been a lot of posts in the part 24 hrs. This thread is the best. Although I started chemo in jan I have been a part of the dec, jan and feb threads and this one is the most active. It's been great to be able to share and support all of you. There is always someone here.

I had my CT scan today in syracuse. That's the 4D scan and they put a little box on my diaphragm area and watched it and my heart movement during the scan. The RO told me that my heart "is in a really good place" (thanks!...double meaning) and that it does not move with respiration so the regular rads without the respiratory gating is appropriate and I don't have to worry about possible future heart damage from rads to the L side. That's good. They are also doing a study there (upstate medical university) to see which position during rad (face up or face down) will cause the least amt of radiation to your heart and lungs. So they tested me face down too. In the past that position was for large breasted women, which I'm not at all, and of course just for lumpectomy. No benefit there for me either so regular old rads is fine for me lol. So now I feel comfortable getting my rads closer to home with just the regular technique. But now that has delayed the whole thing as I have to have another simulation here and they can't get me in until next Friday and by then I will be almost 5 weeks PFC so probably won't start until closer to 6 weeks post chemo, probably beginning June. I hope that's not a problem. The scheduling thing is so frustrating as I can go any day any time. Well at least I can get tips from all of you.

Macintx, I had dd taxol too. I had my chemo on Monday and by thurs or fri was feeling "better". 2days after was my worst. I got neulasta shot on tues. My white BC count was always great, even high so she dropped the neulasta down to 4mg from 6 which helped with the bone and joint pain. That was my worst complaint, aching and flu like feeling for 2-3days. And also the terrible metallic taste. I hated that so much that I had to make myself eat and drink. Was not really nauseous on taxol.

Robin and DJJ, good luck girls. In your pockets and wishing good news

Jbokland, my de-porting was done at hosp at interventional radiation by a PA. Mine was also in my jugular, over my collar bone then below collar bone by about 3". I've seen them placed in different locations in the chest area. Given local anesthetic but also fentanyl for sedation which I'm glad I had. I didn't feel, or know a thing. It has also been done in doctors offices I know. I have sutures in place now so little tender but it feels so much better already

in car on way back now, so I am just dropping in.  I'll read and catch up when I get home probably tomorrow!!  Until then if you are bored;). Check out my YouTube video diary of chemo 

http://youtu.be/asXXKhBwLHg

RHGSR-Where are you going for rads? I'm going to Austin Cancer Center on MLK

DJJ and Robin, hope everything went well for you today!

Got the path report & it was really great news.  I missed a PCR by just a smidge.  A few microscopic clusters of cancer cells surrounded by scar tissue (largest cluster was 3mm) was all that was left after chemo.  We will never know whether there was cancer in the lymph nodes that was killed by chemo or if there was never any cancer there.  I like to think the nodes were always clear .  BS says, see her in 6 months.  yay!

I'll be calling the RO tomorrow for my first consultation . . . switching to a different location (still Johns Hopkins) where I hear the docs are more state-of-the-art.  Distance-wise not too big of a difference for me.  So lucky that way.  I think I'll try to schedule my appointments mid-morning so that I can avoid rush hour.  

surgery is complete. At home resting. My "not a node" is a node.... Perplexing as it was in an area not usually containing nodes. I asked my BS...did it fall?.... I thought it was amusing but it fell flat! Looking forward to seeing my daughter tonight. 

Congrats oranje on your results! Congrats Kim on finishing rads!

I know I am missing bunches of you, who all deserve recognition...I apologize. I am drifting at the moment the iv meds are so much more efficient than by mouth meds. 

it is blocked for some not sure why.  I videoed it on the Cheer for Jodi FB page.  And, i also have video the ringing the bell.  

My chemo was for 5:30.  Got there to sign in at 4:30.  I went to infusion center and came back by 5:15.  Waited and waited- at 6 my husband went and asked what was going on.  The nurse forgot to sign the orders and now she is gone.  They got someone else to sign off over an hour later.  We finally got back at 8:30:(. My dh was beyond cranky, i was an emotional mess because waiting 4 hours can do that.  It totally took the happiness out of it. I slept for half of it.  Dh was still in a mood.  We were hungry and everything was going to be closed.  Finally, the final beep!  I told the nurse this was our last chemo.  I was the last one there, and the nurses was trying to close things down.  But, he went and got some and said we are ringing the bell c'mon.  He was awesome.  

Then, we were right- room service closed, chick fil a closed!!!!  Ended up with taco bell- nacho supreme:(. Oh well!  I did come home to a sign in the front yard from the kids at school!!

My procedure yesterday was easy peasy.  I love my BS!! She said that this was not the way she wanted to be seeing me.  She got all the calcifications out and the scar is small and discreetly off to the side.  Won't have the results until Monday.  Hopefully they don't find anymore then they found in the needle biopsy and I can move on with radiation!!!

Robin, glad yours went well.  Your lymph node moved...that's because you are such a strong fighter it was scared of you :-)

Jodi, Loved your video.  Sorry your last chemo was such a pain.  How dare that nurse forget to put in your order....Arrggghhh!!! She has no idea what the last chemo means to us.  And she made you miss Chick Fila...that's unforgivable :-) But your done and that is all that matters.  Congratulations!!!! I didn't get to ring the bell because I didn't know my last chemo was my last chemo.  But I have hercepton infusions through January 2015 so I will be ringing that bell like crazy when I complete that!!

Curiosity question.  I don't have to worry about it for a year but do they make a new incision to remove the port or do they cut the old incision again to remove it?  I want to start using Mederma on the scar but not if its just going to be re-cut.  I think that the Thoracic surgeon that put mine in did a horrible job.  My scar is so thick and ugly. 

did anyone head into rads not cancer free?  They haven't scanned my internal node, but chances are I am going to have rads with some cancer. I already had a BMX.  They said they could Remove it but it was risky.  I guess I will have a long talk with the RO on June 4

good luck DJJ with your results on Monday. Got my port out on Monday and she used the same incision line. Dissolvable sutures and steri strips. It looks good but I'm very freckled and sun damage on my chest so I don't think it will show much. Speaking of freckles and sun damage, mine seem to have popped up more, especially the yucky sun spots (age spots) on my arms, chest, back. Anyone else. Also just posted on the hair thread, I have no hair on my arms, underarms, upper legs, pubic area, shoulders, back (smooth as an egg). My light weight summer clothes feel weird against my skin. And the few eyebrow and eyelash hairs that I've kept (maybe 10-15, I should be glad for those I guess) are growing longer but not getting new hairs. And of course some chin hairs (great, there of all places) and I now think my head looks like a kiwi, but from more than 2feet away still very bald. Will be 4weeks post chemo on Monday. Oh boy, everyone's different. 

My daughter's grad from college is tomorrow, SUNY geneseo in upstate ny, near Rochester. I don't think anyone on this thread is from the northeast or NY. Then moving her out of her house on Sunday to a storage unit for most stuff, furniture etc only to move her back to Rochester in august (diff house) when she starts grad school. She'll be home for the summer which will be nice and working at a summer camp for autistic children. She's going to school for speech therapy. My kids (ages 21 and 24) are great kids. My son finished his masters in dec 2013 and is a mental health counselor in albany ny. On his way home now to go to his sisters graduation this weekend. (Sorry, had to brag a little)

Wow, you ladies have been busy!  I have been at my DD's for a couple of days. Took a much needed break from BC after my last day of rads. Spent fun times with my grandsons. They are like a glass of wine-they make everything better! It feels good to not have to go into rads every day. Some people say they miss it, but I haven't yet! I am healing very well, and really, the only place that is red is my boost area. The rest is light tan and not itching, sensitive or painful anymore at all. My RO said it looks great! I never felt fatigued. Will do my mammo in early Sept and meet with MO soon to start HT..not looking forward to that.  

I hope the rest of you are doing well. 

Have a wonderful week-end!

lisa. I'm born and raised in Schenectady NY!  Know Genoseo and SUNY!  I am returning to Saratoga Springs at the end of June to get married there.  😊😊 I will be 3 weeks PFC 

I have 4 Taxol left and my hair had suddenly sprouted. White kiwi fur.

We went out and did a little dancing last night...the most fun I've had , feeling relatively normal, too !

I will share my little 30 second "thank you" video I made for my family and friends. 

http://flipagram.com/f/1j4PNVFjn6

had a great 24 hours of Relay for Life,   I joined the team from the Breast Cancer Support Group, Boson Buddies. They had been raising money over the past year and by this weekend the total was over $10,000 which put us in 3 rd place.  The total raised for the relay before adding the money raised on site over the past 24 hours was well over $115,000.  I walked 3.5 miles last evening and another 3 miles today. I was brave and walked "topless". Lots of sun block lotion today all over my head.  I was also honored to help  hold the banner for the first lap, which is the survivors lap. I'm the baldy on the left.  The woman at the other end just had her final breast reconstruction a week ago  the Miss Relay contest was also fun, cute guys in drag, getting tips as they walked the tract, of course all  were put  in their cleavage. 

Luminaries were lite for those who past and in the bleaches spelled out HOPE

Really had a great time and looking forward to fundraising and next years Relay.  Barbara. 

question-  seems like I am always saying that lol!  Ok- did you have scans or something before rads?  Is that part if the mapping?  Finished chemo which you all know because I have been whining about it for the last 3 weeks lol!  But, I don't see any scans on my schedule.  I head back June 3.  Getting port removed too which I was planning on keeping.  Started to have some nerve pain and MO said take it out.  She really worries about infection because I am not near the hospital.  Can I just be long winded here!  Have to tell you one thing:

Dr told me on Wednesday how proud and excited she was that I made it through.  She said I made it through like a champ.  That the whole time she was worried I was going to have traveled all that way for her to send me home.  I told her I knew that was a chance but it was worth it.  Who knew???  Dr "Sheldon" as I call her actually cared lol!  She is just so professional.  And then- she hugged me!  

Having a bed lying weekend.  Always is like this the Saturday after AC.  Hoping everyone has a great weekend!  

Holli- thanks;). I wanted to put something out there for people to know I am still fighting hard.  I'm kind of notorious for doing Michael Jackson (usually after cocktails;)