Starting Chemo in April 2014

Footballnut - I don't recommend driving yourself to chemo.  I know at least for me, I feel sleepy from the Benadryl.  My MO said its safer to have a driver.  I have about a 30 min drive to the cancer center, but I'm fortunate to have friends take me when my DH isn't home.  You amaze me with your exercise!  I can barely walk.

Lena-Lou - So sorry to hear you've had so much trouble.  Being in the hospital stinks.  Glad you're home.  Take care of yourself.

I just had Taxol #8 yesterday.  Only 4 more to go!  They halved the Benadryl this time because I've gone this far without a reaction so they said we'd try the lower dose.  I still slept in the chair and had RLS, but didn't sleep the rest of the day away for once.  The steroids kicked in later and I only slept about three hours last night.  Feeling better today.  I attribute it to the lower dose of Benadryl.

To all who have finished chemo -Yay!  Must feel great to be finished!

Hugs to all,  lilyrose

The overall fatigue is manageable now. I can make it through the day without needing a nap, although I still fall asleep around 8:00 pm. But the muscle fatigue is KICKING MY ASS! The slightest bit of exertion is killer. And it's getting worse every day. Stairs are becoming impossible. We've had nice weather this week and every day when I head home from work I think I'm going to change into sweats and go for a walk, but as soon as I get home, my legs say, "Nope. Go put on pajamas and lie on the couch for the next three hours." 

My last TCH treatment is next Wednesday. I'm feeling a little anxious about it. I know others have felt the same as their final infusion approached. You'd think we'd be nothing but excited, but instead it feels like what little remaining strength we've been clinging to for months finally has permission to leave us completely and we're utterly spent. I've gone through the dark place five times already, but for some reason the 6th time is scarier.

Thanks to those of you who have come out the other end and continue to motivate us. You give me hope that what has become "normal" since my diagnosis is NOT permanent.

I have been keeping my spirits up throughout most of this ordeal.

But this last week or so .... it's been hard!  Breast infection delayed the last chemo treatment. Hoping I can get it next week, but will see after appointment with breast surgeon on Monday.  Being admitted to the hospital for IV antibiotics is still not out of the question.

That also means radiation is delayed.  And got bad news from the RO's office.  Apparently, although the actual DOCTOR is in network with my insurance, the facility is NOT, so I would have to pay thousands of dollars of out of pocket fees (I confirmed this with my insurance company)  I am so disappointed as this RO came highly recommended by so many people .... at least 3 of whom had personally had him as their RO!  I already had my initial consult with him and really liked him and the facility.  Plus, his facility is connected to the hospital facility that is just 10-15 minutes up the road and he has access to all of the hospital records ... including all lab reports, pathology reports.  He is on the first floor of the same building where my BS and MO are ... and now I can't go to him :-(    My hospital doesn't have their own radiation equipment, so I now have to go to someone totally outside of the hospital system ... which means getting copies of EVERYTHING.

Of course, I find out all of this late Friday afternoon, so can't even get an appointment with the next closest RO.  Will probably wait until my appointment on Monday with the BS to see if he has any recommendations.  The thought of driving even further every single day for 5 or 6 weeks is something I am not looking forward to. The next major hospital would require driving through a lot of traffic every day.  And there is one facility that I will NOT go to as I have not heard good things about it so that cuts out another few off of the list.  Would have called my nurse navigator, but she has left for the weekend already.

Just so disappointing ... hate 11th hour stuff. And although I am thankful we do have insurance, insurance drives me NUTS.  Have to deal with dental insurance at work all the time (work for a dentist) and that gets VERY frustrating!  

So close and, now, yet so far :-(

linda505 - I feel for you!!   I have been billed several times by different radiologists ... all of whom use the same billing company.  Have had to call them four times giving my insurance information.  Each time they say they don't have it ... wtf, they only have one job, billing, and they can't keep track?!?  

I remember when it happened the first time thinking that I would be furious if they had it read by someone that was not in my network because it wasn't like I had a choice!  Had it done at the hospital and would expect everyone who worked there to be in the same network!

Right now there is also an insurance issue up in the air with my MO.  I had been paying the same copay for the chemo day and for neulasta day.  Then got an EOB that showed my copay on the neulasta day should have been half of the chemo day.  So, since I had paid too much for the first four chemo/neulasta days, I arranged with the front desk girl that I wouldn't pay for the neulasta days for the next 4 treatments and it would even out.  But on the third visit, she said someone in billing told her we couldn't do that and that they were fighting with the insurance saying it should be the same.  So I paid the full copay ... shrug.  I figure I will be going there for a year for Herceptin, so it will get straightened out eventually.  

But still  FRUSTRATING !!!   Not someone we need to be going through on top of everything else!!

I just wrote to a friend.  Its' all coming to a head for me too.  She said she's never heard me this depressed, could it be the chemo?  Well, yeah.  I can't DO anything and I'm in constant pain and alone all day.  I think the pain pills must be depressants too.  It's all just gone on for too long and it's intensified rather than waned.

And of course, the fear of the cancer is ever present.

Maybe this is just the course of this thing.  Just as it's ending, we can't take it anymore?

good morning all!

Bloodwork today and round 3/6 taxol tomorrow. I am starting to feel more aches but do not need painkillers yet. Sometimes I feel like a rubber band is wrapped around my thighs or upper back. Joints are achy. Tummy seems to be doing ok. It seems that if I take colace the day of treatment and for a few days beyond things keep moving. Having said that I think that I've developed a small hemorrhoid excellent!

Another thing that I noticed after round 2 is that my tongue started to feel a bit tingly and taste buds are at 70%. I also get hot more frequently at night

And then there's fatigue. I feel that it is increasing but keep trying to get my butt into the gym. Today will be an off day as I went yesterday

I continue to work on my fundraisers. Today I will meet with rep from the credit valley hospital where I am being treated. So excited!

Best of all football is here!!! Woo hoo!!! I'll be done chemo before the first regular season game!! Yahoo!!!!

Have a good day all!!

Hi Ladies,

Wow, this forum really DID go quiet over the weekend! I hope that means people were out doing things and living life. I was! I was doing low key stuff, but still...stuff! I was having problems being out of breath early last week, but it progressively got better by this past weekend, so I was able to get off the couch a bit more, and actually take the dog on short walks.  Gotta celebrate all the little things. SharonDe: You know what I mean. Like being able to walk up the stairs!

We went to see Guardians of the Galaxy this weekend, and we all really enjoyed it. If you like any of the Marvel movies (Avengers, Thor, Iron Man), you'll like this one, too.

I also watched the first three Bourne movies (borrowed them from the library) with my 13 year old daughter, and enjoyed those, too.  Trying to get #4 from Redbox but it hasn't been available the times I've checked.

Went to my PT yesterday and she "graduated" me! Woo hoo! Done with PT visits. I still need to continue with my stretches and exercises to keep my body in good shape for my exchange surgery next Spring.  During this visit, my PT realized I had AWS (axillary web syndrome), or "cording." That's why my arm hurts when I reach up high or forward. She said the chemo & rads make it worse, so it won't get better until after rads are done.

Then yesterday, I booked a Mediterranean cruise for the hubby and I for next summer to celebrate our 20th anniversary (and finishing my treatments & surgery). Looking forward to that!  Neither of us have been to Europe before.

I hope everyone is doing well.

EverForward: Early congrats on finishing TCH Wednesday! Don't be scared...you can do it! You've been doing great all summer...it's just one more.  I hope your muscle fatigue has gotten better (same to you ColdInCanada).

MakeLemonade: I hope you got good news yesterday from your BS and got all the RO & insurance stuff figured out. Insurance can be great and it can be a royal pain, as I think we've all experienced at one time or another. I remember disputing bill after bill after birthing my babies during my maternity leave! linda505: I had the same problem with my insurance (docs using labs unapproved by insurance, back when I was having babies). It's really not fair for us to be responsible for things out of our control. There's gotta be a better way. I hope they figure it out soon.

clarrn: Congrats on your anniversary! 

Timbuktu: It's understandable how you (or any of us) might feel depressed as a cancer patient. We have a lot to worry about, and chemo knocks us on our butts.  But, you can do it! Take it one day at a time & after chemo is done, I think it'll get much better.  

Ddkath70: Glad you found a wig you like. I found it's nice to have a good wig, so I can at least look normal when I go out in public and not draw any looks.

Have a good day everyone!

A "funny" thing just happened.  I suddenly realized that I am out of my blood pressure meds.

I take many pills every day and I lost track of this one very strong pill.  No wonder I've been feeling like I'm dying.  I, in part, decided that I can't have the sixth infusion feeling the way I do.  My heart pounds so I think i'm going to pass out.  I have absolutely no idea when I ran out of these pills but when I called the pharmacy he said "It's been here waiting for you!"  I get the impression it's been awhile.  Thought I'd let you girls know, sometimes it's not the chemo that's doing you in!

Swiss, why are the mammogram results taking so long? Every time I've had one, I meet with the radiologist immediately afterwards. Waiting 2 weeks for mammogram results doesn't sound right to me. Unless the person who will read the mammograms is on vacation or something.

Hello!

I am two weeks PFC and yesterday was the first day that I didn't absolutely without question need a nap. Today, I'm not sure I'll make it all the way, but the fatigue is definitely subsiding. And, my hair is definitely growing. A teeny tiny bit at a time, but it's there. I so look forward to the day when it is long enough for some kind of a mini-pixie so I can ditch the wig. While the wig looks natural and all, it is definitely the most uncomfortable thing I've ever worn.

Swiss: i do not understand a two week delay in reading results. I got my results right away when I was called back in. I didn't get a sure diagnosis until the biopsy, but the mammo/ultrasound results they read and relayed them right there that day. I hope you actually get them much, much sooner. The waiting, in all of the stuff we've been through, is positively one of the most horrible things. Good luck. I'm sure everything will be ok. 

Timbuktu: Glad you found the pill!! I am still operating on half a brain. My husband asked me the other day for the English word for 'compass' - he couldn't think of it, it took me about 30 minutes to figure it out. I only speak English. LOL.

I am taking some comfort in the fact they didn't do an ultrasound...if the radiologist saw something, I'd think she would do that right away like my mammogram last December.  I'm probably jumping to conclusions, but the tech told me she couldn't tell me the results.  The radiologist (in another room) said I could leave.  Should I assume all is clear?  The tech said the results would be sent to my surgeon, so I figured I would review the results with her.  Honestly, I have little faith in my treatment, due to the fact that I've had so many unnecessary delays and missed opportunities throughout.  I told my husband if they do find more cancer I'm leaving Oklahoma and seeking treatment in Minnesota.  Having trust in your treatment is something you should not take for granted.

EverForward: I guess your cording must be back due to chemo. My PT told me cording during chemo is caused by the lymphatic system trying to get rid of all the dead cells from the chemo. I'm glad to hear that it went away for you right after your lumpectomy. That means it should go away after chemo is done!  Also, thanks for explaining why Tamoxifen is now 10 years instead of 5. I was wondering about that!

Hooray for you MakeLemonade!!!! Congrats on being done!

congrats MakeLemonade!!! I'm only a few days ahead of you and am in dark trenches for the last time! Its giving me the extra push that I need to push my butt and start taking some of this weight off. I gained 8 lbs!

Here's to no SE's for you!!!!

Stupid steroids. 11:00 pm and no sign of sleep (I've been falling asleep by 8:30 the last couple of weeks). Tomorrow is my last round of TCH, so that's probably keeping me up as well. I can't believe the end is near. Hopefully the dark place won't be too bad this time around. Fingers crossed.

Pretty soon we'll have to change our mantra from "Die, fuckers, die" to "Grow, hair, grow!"