Starting Chemo in April 2014

Thanks everyone! You all are right - the shared bathroom thing doesn't make sense. Fortunately, my nurse this afternoon thought so too. Especially after my bathroom roomie ended up with a stomach virus. So now I have my very own grown-up potty chair. It looks like this: 

Classy, no?

ColdinCanada,  Unbelievable!  Thank goodness your nurse has enough sense to not make you use the shared bathroom with sick-boy.  I'm sorry for him, but man!  You can't afford a stomach virus on top of everything else.  I'm surprised they can't move you to a private room w/bath.  You amaze me with your sense of humor!  We are all rooting for you to get the heck out of there and home with your family.

Hugs,  lilyrose53

Coldincanada - I'm sending warm healing thoughts to you from Texas.  I just got off the antibiotic train myself.  Thanks for the potty pic and  keep up the good humor. 

I'm getting my port Monday and then see the MO Tuesday to get my start date.  I'm actually pretty nervous about the port even though, or maybe because, this will be my fourth surgery in 2 months.

The past two days have been literally horrible. I have experienced the most horrible leg, joint, back cramping and pain. It comes and goes. Sometimes it makes me cry in pain and other times it just is annoying. I took a short walk yesterday, but 1/2 hour later the cramping and pain was worse than it had ever been. I'd appreciate any suggestions. I know a side effect is neuropathy, but I am not sure if this is what I am experiencing. The nurse at the infusion center told me this weekend would be the worst as far as my side effects go, so I am just pushing through. I also am now getting a sore throat. All this on top of the weakness, fatigue, heartburn and lack of appetite...ARGHHHH!

Also, some advice from the main BC site.

Coping with Fatigue

Weakness

Managing Appetite loss

Managing Heartburn

Heartburn remedies

Kind thoughts to you all

---Your Mods---

I made it through my first chemotherapy on Wednesday!  Finally, today I am feeling almost like myself.  I have to be honest, the last few days have been the hardest since my diagnosis back in January.  I had my port inserted on Tuesday morning, and then 24 hours later I had my chemotherapy.  A day after this, I had my neulesta injection.  

Five days post-op, my incision from the port still hurts, and is a little oozy still.  It's sore.  It feels weird to have something under my skin...I know this is less than a week, so I'm certain I'll get used to it.  But it is a strange sensation trying to shower or do whatever, and feel like my right arm is stronger when I've been favoring my non-cancer left side for a few months.  I'm hoping the freedom of full movement will return even with the port sitting there.  

Wednesday I stopped in at my Oncologists office before heading over to chemotherapy.  Here is where I get frustrated.  Apparently, his nurse made this appointment even though the doctor doesn't usually see patients on Wednesdays.  He happened to be in the office, and he gladly sad down with my husband and me to answer any last minute questions.  Honestly, we didn't have many questions, partly due to the fact that we were never given the actual "chemo education" visit the nurse was supposed to provide to us the week before.  You know what I mean?  I knew nothing, except what I've learned on this website, so I didn't know enough to ask questions.  The doctor was actually irritated with the nurse for other things she overlooked on my schedule, so I didn't mention her neglect in this area too.  I should the next time I go in, but as of Wednesday, I just wanted to get the darn day over with!  So after getting lost a couple of times trying to find the infusion department in the hospital next door, I was on my way.  

The actual chemotherapy administration was not bad.  Because of all the waiting around (my appointment was at 9, and by the time we were in infusion, it was noon), I was starving.  I had a terrible headache on top of this, which I'm thinking was due to lack of rest after a long day of surgery the day before.  The infusion nurse was gentle...my port was supposed to be accessed but my oncologist's nurse forgot to inform the surgeon, so both myself and my oncologist were worried it would be painful to access the first time.  No worries, the oncology nurse's incompetency was overcome my the infusion nurse  She was gentle and very sweet, and before I knew it my pre meds were being administered.  After we got started, by husband ran out and brought me (ugh) a fast food lunch, which I was grateful for seeing as I was completely famished.  The nurse then brought over my chemotherapy meds, and we were heading home by about three o'clock.  It was a long day, and I couldn't wait to get home.

My kids were home, and honestly, I felt completely normal.  I asked them how their day went, went online and ordered glasses for my son, and decided on dinner.  About dinner time is when I started to feel a little bit "off."  I was only able to eat the chicken part of our dinner,and the usually-delicious pesto pasta was left off my plate.  I still felt ok, just not quite right in the tummy.  The majority of the next day was the same.  I wasn't sure if I would need to drive myself to this appointment, so I didn't take any pain meds for my port incision, and I was really hurting at this point.  I had to go in at 3 pm to get my Neulesta shot, and the traffic on the way home made it a two hour trip.  I was barely able to keep my eyes open, and slept away most of the evening.  I don't even remember seeing my kids this day, which makes me sad.

Thursday evening is when the real bad part came for me.  I was just really incredible sick to my stomach, but not throwing up.  It persisted from Thursday evening until Saturday morning.  Everything tasted, smelled, sounded just gross, so I was unable to eat without thinking I was going to be sick.  The headache and bodyaches I was told would go with my injection were also making my day even more difficult.  From my vantage point today, it seems like a small window of time, but when you're in it, it is your life.  I broke down once or twice in tears.  I honestly don't know that I can do this 7 more times.  

Today, like I said, I feel better.  I'm still taking anti-nausea tablets that allow me to eat something.  It's the empty stomach that makes me feel worse, so having anything, even Campbell's soup and saltines in my tummy is a wonderful thing  

I realize now my big mistake was 1) not eating something before chemo, 2) not eating something healthy when I did get a chance, 3) not taking the anti-nausea tablets before I started feeling so sick.  But I need you all the help me through this.  I'm not feeling 100% with the oncologist's nurse...should I tell him this?  She totally forgot two major appointments I had with his office, she didn't tell my breast surgeon my port needed to be accessed, she's just plain flighty and forgetful.  Once my incision is healed, will this whole thing feel better?  Sorry to be such a Debby Downer today

Thanks again for all your wonderful insight and suggestions.  xoxo

Sunshine...I unloaded the dishwasher today too  It's amazing what makes you feel accomplished, isn't it?  Yes, the cramping, I'm glad you mentioned it.  Last night was terrible.  I kept thinking it was menstrual cramps, but it was beyond what I'd normally have, so it must be chemo-related.  We will get through this  Sometimes it's just nice to know someone out there is living this too--I mean, I'd rather than neither you or me or anyone else has to live through this--but it is reassuring nonetheless.  

xoxo

Sunshine...friends who have been through the same regimen as me said that I can expect one week of feeling "not myself," and then it's pretty good the rest of the time.  I still remember two different women I saw in the infusion department waiting room: both were obviously going through chemo, as I could tell from their stylish hats , but they looked happy.  One looked like she stopped off on her way home from work, and the other sat and chatted happily with a grown daughter.  I wondered if this could be me in a few weeks: imagine not being scared out of my wits and actually feeling confident (or at least looking it!) without my own hair?  You never know.  My chemotherapy is scheduled every two weeks, so I can perhaps count on feeling good half the time...some days this sounds ok, others, not so much.  But my doctor reminded me that, at this point, for me, he sees this as a cure.  I have to think this is a cure, not just a way to prolong life a little longer...this window of 4 months of feeling good only half the time is the price I pay for a cure.  I can't imagine missing out on the things I could be missing if I don't do this...yet, on Friday night during my worst bout of nausea and misery you could have talked me out of it pretty fast!  

I'm also thinking a lot about the changes in my appearance.  I think everyone does.  But I think I'm more sensitive to it because I want to look like a "normal" mom for my kids.  We are still fairly new to our community, so often my kids' friends and their parents are still only meeting us for the first time, and presenting myself without hair seems like a nightmare.  I did, however, purchase a wig, that arrived on Wednesday.  I haven't really looked at it yet, but I'm hoping for the best.  I think when the kids and the hubby are out tomorrow I'll try out my new look

 I started chemo one day after you, so it's good to see someone going through similar experiences and coming out with a positive attitude.  I'm still in the stomach-cramps-at-night phase, but I'm hoping I'll be better soon.  I am betting that your allergy meds helped you with the injection...I didn't take the advice of the nurse and skipped taking the Claritin she suggested the day of, and I've had lots of side effects that I would have done anything to avoid.  Mainly the headaches and body aches.  Good job getting through it!

Am I the only gal here doing chemo every two weeks?  I'm doing the first two chemo drugs 4 times for 8 weeks, then finishing with Taxol for 4 more rounds in 8 weeks.  I see most everyone else is doing every three weeks.  Ugh.  I dread doing this all over again in a week and a half already.

swissmiss- I am doing every other week for my 4 AC s and then weekly Taxol for 12 weeks.   Also not myself yet 5 days past my first treatment.  Just took another Zofran.  But my husband just told me that I am doing it, even though it's hard, and my almost 3 year old said "never give up mom!"  Wisdom from the mouths of babes!  3 more of these, hoping that the Taxol is better!  And the 

Hey Swissmiss - I am on the every two week regime for my AC also - and like clarrn - then to the weekly taxol with a little hercepticin thrown in for good measure.   I am supposed to start on Friday of this week - see my PS today to see if my bad healing area is better enough to start chemo - part of me wants me to say yes the other part says I would like another week of healing.  I get my port tomorrow and my Muga test on wednesday.

Hey ladies -

Day #4 from my 1st chemo and I woke up this morning feeling so much more like myself! Haven't had to take any nausea pills yet, ate somewhere breakfast,  helped my kiddos get ready for school and just feeling so much more "with it" in days. The one toughie is the fatigue.  It comes and goes but when it hits, its pretty rough. Any suggestions? I did take a walk around the block each day, but wondering what everyone else's experience has been with this aweful tiredness! 

Ps... goal is back to work tomorrow!  My hubs thinks it'll be good for me to get alittle back into the swing of things.  

Pps... since im on super anxious mode regarding the dreading constipation we kepe hearing about, I tried Fiber One Cereal (chocolate flavor) and its yummy!! And, tmi, seemed to help :-)

Xoxo

Jen 

HOME!

PHEW!

WHAT a weekend!

SO, when I last left you all, I was celebrating my grown-up potty chair, which actually turned out to be kind of a let-down. I mean, it SOUNDS cool, but really, it was just kind of gross. And that's all I have to say about that (I watched Forrest Gump on my private TV last night).

Saturday night, I had the WORST headache. I told my nurse (who is SO nice, but she just doesn't LISTEN) that I thought I was dehydrated, and if I could request a saline drip. She laughed and said that NO, my blood pressure was fine, so I was not dehydrated. She offered me a codeine for the pain instead. Now, I KNOW better. I KNOW what codeine does to me, and it is NOT pretty. But the nurse said that she would give it with an anti-nausea drug so I would be fine. My headache was so bad that I caved. Three hours later the vomiting began.

By the wee hours of the next morning, I was so dehydrated that I woke up with my tongue stuck to the roof of my mouth. My headache was beyond bearable, I was nauseated, light-headed, and I wasn't really thinking clearly. THIS was my rock bottom. At that point I was seriously considering ending the chemo treatments and taking my chances with the cancer. THAT is how badly I was feeling. 

FORTUNATELY, my nurse that morning was someone new, and she not only listened to me when I explained what I KNEW was happening with my body, but she HEARD me. She nodded and said "Let me see what I can do." Less than half an hour later, she had paged the doctor, gotten an order for a saline drip, and was hooking me up. It took FIVE hours of IV fluids before I felt normal again. That's where I was all day yesterday.

This morning a medical oncologist who works with MY medical oncologist stopped in and assured me that steps would be taken to ensure this doesn't happen again. He lectured me about not eating enough (I pointed out that hospital food is YUCKY), and asked me whether I felt well enough to go home. OF COURSE I said YES. My blood counts are all back to normal, and I feel better than I have all week, other than feeling really tired. I was given a prescription for two different types of antibiotics, and instructions to take it easy for a few days.

I am SO happy to be home. So, so, SO happy. Also it's nice to be able to hug my family, and to see them without medical masks on.

AND it is most wonderful to once again use a REAL toilet.

swissmiss and mikishelley: how are you both feeling now? Those side effects are so much nastier than expected, right? But apparently they have meds to help with EVERYTHING, so ask! ask! ask! your doctor. 

Sunshine36: I, too, was really fatigued, and I pushed myself to walk, do housework, etc. Everyone is different, but it just made me MORE tired. I had a talk with one of the experienced nurses during my hospital stay, and she told me to TAKE IT EASY for those first 10 days following chemo. Do NOT overdo, she said. Give your body a chance to recover, and THEN get back to life after that. So when you feel fatigued, take a break. Just some thoughts. I hope you're already feeling better and you can completely disregard everything I've said.

ChrissyLB: Awesome picture. Thanks for sharing - you're adorable! Keep us posted on how everything goes. 

Footballnut: YOU are going to be fine. We are ALL strong simply because we're showing up. For me, I try to find the ridiculous in scary/unpleasant situations, because the alternative is sinking into despair. And I can not go there - it's too hard to pull myself back out. One day at a time. 

P.S. All you ladies who work through chemo are AMAZING. Seriously. Just, WOW. A big round of applause for you all. 

ColdinC - congrats on getting home.  Love your attitude and humor.

Swissmiss, Longisland, clarnn and Sunshine - Sounds like there were some difficult times with the first cycle, but you've hung in there.  Thanks for the reports.

Footballnut - I'm with you.  Haven't started yet, and very nervous.

Chrissy - hope your first treatment was OK.  Great photo of you and your family at the beach.

Linda - sorry about the delay, but sounds like it's not all bad, if you can reassure yourself about your treatment,

Ann - looks like we will be on the same regimen - do you go every 3 weeks?