May 2010 Chemo

I'm so far from get anything done but when I do I want to be informed then I was when I had my BL ..Not that I was not informed I was so anxious to get the C out of me I didn't really want to talk about anything else...but when it come to my PS I really want to know I have made the right choice for me...without any second guessing on my part..I really do believe the BL was the right choice for me because even now every once in a while I get the oh! no! What is that? scare...And I know I would have been doing that every time I got a hair pimple on my right breast...

News on my DAD ....he is being moved out of ICU today .I did talk to the nurse and she gave me the whole story on what was and has happened to him..why he was in ICU so long...his blood sugar levels were giving them a hard time...and He kept pulling out his tubes. he has a really bad case of Sundowner.  Every time some one walks into his room he asks them to get him out of there..he even asks the nurses, he has tried to leave a few times now on his own.,...So now there is someone in his room at all times. They had to first strap down his arms and now he has gloves on..they say is all goes well he should be going home by the 11th or 12th

Thank you for all your good thoughts and prayers....

 If its not one thing its another ....first my leg was hurting (its getting better every day)  now I have a rash on my legs..an some big red marks...what the h^%#^&%  now what?   Hair on my legs is growing back, so I went to shave today and found all these red bumps..first thought it was in the hair root but NO they are every where..on my legs.. woke up with them this morning they were not there yesterday because I was laughing and I showed my DH my legs last night, laughing because the hair growth is like my head very sporadic,  but they were very long...

back to the ONC...geeeeezeee

Hey Ladies,

Have a great weekend!  For those of you who have treatment today, good luck, and for those of you who are done today, congratulations!  Today I'm cleaning house, and tomorrow I'm off to enjoy a night getaway with my DH and maybe catch a movie (haven't been to a theatre in over a year, can you tell I have a toddler!)

You guys are my inspiration, and I know that I haven't met any of you, but I find such comfort in reading about how everyone else is doing.  Best support group I've ever found   

Have a lovely, symptom-free weekend free of BC thoughts!

Irishtess - Thank you so much for the info on MSKCC patient portal!!! I signed up today and I'm able to pull up all my lab results - love it! Not that I know what anything means...  but it's one more thing for me to over analyze LOL Also, I hope your arm feels better - I cringed at the thought of pulling myself up with my affected arm eeekkkkk

Day - Where would I go to get those teas? A GNC/Vitamin World type place or a Whole Foods type place? Or somewhere completely different?

Sacphotomom - I hope your leg is feeling better.

LibraryJenn - Have a great night with your hubby, you deserve it!

Patricia - I love the new photo SASSY!!!!!

Hope everyone has a great weekend...

Hi Ladies,

As we move towards the weekend, let's put behind the pain, the fatigue and those setbacks and look for things to do and enjoy ourselves as if there is no tomorrow. 

sacphotomom: it's nice to know that your Dad is pulling through, be strong, we are all here to support each other.

Last friday on the day of my 6th taxol treatment (i.e halfway through my first cycle of 12 visits), my onc and other team members after a review of my mri taken after the 3rd treatment felt that the tumor was progressing ang suggested a possible change of treatment.  I almost teared up but the leader of the team,(the surgeon and director of the cancer centre) felt otherwise having examined the tumor the very first day of my appointment. her position was that the tumor changed size due to disintegration and change in shape. the team also unanimously agreed that the exposed lymph nodes have completely closed up. she is so positive that we are making a tremendous progress and today I completed my 7th treatment. I am so full of  energy and positive attitude that I have decided to enjoy my life as if there is no tomorrow.

If anyone has had a similar experience, pleas fill me in. Have a wonderful  weekend.

LOL

Hello my friends.  I have not posted in a while.  My TC chemo should have been finished by now but I had changed the schedule so that my final treatment is Monday 7/12 because my twin girls just turned 8 yesterday and I wanted to be feeling well for the celebration. 

 I actually had enough energy starting about 10 days ago to get out and do stuff, which is good because I had my 2 nieces (ages 9 and 12) come visit for the past 5 days -- which was 2 days too long.  All 4 girls had had enough of each other by day 3, but I couldn't take the nieces home because they live hours away and we had planned to take them all ice skating yesterday for the birthday celebration.

It never dawned on me how difficult it would be to take care of kids who are being raised so differently than my own.  We eat a varied and fairly healthy diet, set limits on TV and video games, expect a minimum of 20 minutes of reading per day, and (gasp!) enforce "Please/Thank You" and other manner-based rules.  I felt like a nag the entire week. 

Has anyone else had a change in their voice?  At times I sound like Minnie Mouse.  What about shortness of breath?  This is what really bothers me.  There are times when I feel like I am only getting about 50% of the air that I should.  I have had very bad GERD (reflux) and am on Prilosec twice per day.  Even so it feels like I have a swollen esophagus and like there is a pill stuck about half way down.

Well, enough bitching.  

Congrats to all who have had their final treatment and sweet, warm thoughts for those who continue slogging through.

Jen

Day ~ I checked out Mountain Rose Herbs.  I love that they have info on the various herbs, etc.  I was wondering if the organic teas are just as good or effective.  I picked up dandelion and nettle at an organic market nearby - they didn't have cornsilk.  Any thoughts?

Jen~ holy smokes!  you have some serious energy!  I loved reading your post as I start preparing for my daughter's graduation/going away to college party soon.  I hate feeling like my kids are missing out cuz mom's sick and tired all the time.  You have a great attitude.  Btw, count your blessings that your kids are not picky eaters.  Re: shortness of breath, my onc told me it has to do with low rbc counts - will find out more on Thurs. when I go in for 4th TC infusion.  I've been taking Prilosec too for reflux - it sure helps.  Good luck with your infusion on Mon.  and I hope the party is a huge success and the girls have a memorable b-day.   

Cleob~ thanks for the reminder about enjoying our weekend.  I'm feeling like I'm getting more and more worn down and my attitude is starting to slip.  There's still too much living to do!!!   I don't want to miss out!

Patricia ~ hey feisty lady!  Tuffy looks great!  I'll have to post a picture of Fiona.  I took some pics of my 87-yr old dad modelling Fiona when I was in Toronto last weekend.  Then my brother tried it on - laughter therapy at it's finest!  Yes, Carlisle is just up the road.  I wanted to tell you I ordered Kanta's CD.  I've been looking around for another one to get, and I downloaded Louise Hay's on cancer.  I needed some good meditation cd's - so thanks for the suggestion. 

For anyone who wants a hilarious movie to watch, Bill Cosby "Himself" is laugh out loud funny!  My friend picked up a copy for me at Barnes & Noble and I howled laughing.  You know what they say, laughter is the best medicine.  Have a great weekend May Warrior friends!

Hi All,

Had my 4th and final TC treatment yesterday, yay!  It took a little longer than the last treatment, but not because of a reaction. Just a little scare at the infusion center.  Someone passed out in the doctor's waiting room.  I didn't see it, but there was a mad dash if nurses out to the front of the office.  I heard later the patient was ok, but was admitted to the hospital. Scary.  Anyway, because I use the caps for freezing, I got a late start and late finish so was too tired to post last night.  Nuelasta on Monday and then hopefully chemo behind me.  Next up:  port removal, tamoxifen and rads.  I see the onc again in 3 weeks, I assume to start the tamoxifen.  Rads planning session is scheduled for 7/21 with actual rads starting 7/26, though I may push that back a week as my Dad is having surgery that week and I want to be available to help him and my Mom out (my Mom doesn't drive and Dad won't be able to).  My rads doc wanted me to wait to do planning until the 28th anyway, I was the one pushing for sooner, so we'll see.

CleoB- so glad to hear about the progress and thanks for reminding us to stay positive.   I am feeling a bit down as my period returned and yesterday's treatment kicked it into high gear.  Was really hoping for chemopause, but so far, not.  But, my onc said the chemo is still working and not to worry.  He said 60% of women my age don't go into chemopause with the treatment I've had, so that made me feel better.   I am trying to look at the positive side, at least this time I am normal (unlike the whole BC thing in general, when they say, "Oh but your too young to have it"- hah!) 

Patricia48- I ordered the Cancer CD you suggested to xray-girl. I've been loking for some good meditation/relaxation/inspiration CD's so thanks for sharing the tip.  PS, Love Tuffy!  She is sassy!

packjen- So glad you were able to take the time you needed for your family.  Sounds like you had a great time!  So far, 24 hours later, treatment 4 seems better than treatment 3, which kicked my butt.  I already feel like I have more energy than last time, and I don't have the burnt stomach feeling I had last time. Treatment 4 seems to be going the way of treatment 2 so far, which is good news as that one was not bad at all.

Leana9- great news on the hubby's job!  One less thing to stress about.  Phew! 

LibraryJen- Hope you enjoyed your Date night!  My BF and I are planning one for next weekend when hopefully all the SE's are behind me.  You'll have to let me know what movie you saw and if you liked it.  I don't even know what is playing these days!

sacphotomom- so glad the nurse was able to fill you in.   Must feel so much better knowing what is happening.  I hope your Dad continues to improve and is home soon.

Drim- good luck on Tuesday!  I will be sending prayers and positive thoughts your way!  Last TC!  Yay!  And to everybody else with treatments this week (pack jen, redbarb, etc),  Good luck and hope you have no SE's! GG

Good Morning May Friends, 

Pacjen- I could have written the part of your post about the lump in your throat, and the shortness of breath.  The shortness of breath comes for me, about 5-7 days after treatment.  My onc says it is the decrease in red blood cells which carry the oxygen.  I was told to go to the hospital if it did not improve while resting.  For me it is always worse when I am exerting myself (maybe just walking across the room) but it does improve when I lie on the floor and breath deeply into my lungs.  I did have the transfusion this time, so I have struggled with decreasing red blood count.  I also take prilosec 2 times a day.  This had decreased my indigestion but I still have times when I have the lump in my throat.  Instead of loosing my voice, I cough when I try to talk.  It is so irritating, and is only helped by resting my voice.   One thing that helps me feel sane is seeing that you guys have some of the same symptoms. They seem so random sometimes.   Golfer Girl and X-ray girl I am glad you found the info about cd's helpful.  I have liked both of these.  Not only do they create images of healing, but they are very relaxing as well.  I use them almost daily. Redbarb, thanks for the info about the mesh  underarmor hats.  I will check this out.

I am so happy for all of you finishing chemo!  I call it the Chemo Lounge.  It will be a place I will be happy to put behind me.  I do feel lots of appreciation for the staff and the fact that this treatment exists and can help our bodies to heal themselves, yet I do dread weekly tx for three more months, plus rads.   I know I have to gear myself up for this, as well as radiation.  Sometimes I just get down and find it hard to see how to keep this up.  I know we all feel this from time to time, and yet we do find our strength, and carry on.  Hope your Saturday is going well and everyone is able to appreciate the day!

Patricia48 I to am dreading the TX for the next 3 months..but I really was sad when I realized that postponing the TX this week makes the last one the week of my birthday...yuk..the Doc still insists that it will go easier then the AC did ..we can only pray...

About wigs...I have put "Brandy"  on and taken a pictures of everyone wearing her...even my big tattooed biker cousin..he actually looked really good in it! lol! My brother put it on and he looked like he did back in the shag hair days of the 70's... I decided to have everyone try her on..its fun..and it is a great laugh.

Dang this rash on my legs really looks ugly..especially because my legs are fish-belly white...

Patricia: I got the hats at Dick's Sporting Goods. Good luck.

Day:  I must have missed that post about your back pain or just forgot..   I also ended up in the ER about 2 weeks after my second treatment with the same symptoms.  I wish I would have seen your post it would have saved me a trip to the ER.

Has anyone had a cough?  I don't know if it is my asthma starting up or the chemo?  Just curious.  I have started my Advair again.  Can anyone recommend a good suntan lotion.  I have been using Coppertone Sport but I still seem to be tanning.  We are heading to the beach and I really dont' want to burn.

I have my last chemo on Thursday.  I want to take something into the chemo lounge(I like that term)  for the nurses (food item)  Anyone have any ideas? 
Have a great Sunday everyone.

Barb

redbarb, the post with my horrendous hospital experience is on page 13 (hint: to get there faster, look up in the URL bar and change the page no. like here it says at the end "?page=31" change the 31 to 13 and click enter).

I had some cough on and off too, but I know for a fact mine was from allergies. It is way better now, at one point I was practically wheezing when exhaling when I was laying down. Got me scared to bits! Fortunately there was nothing to worry, it was all from lots and lots of post-nasal drip. Now I'm careful to drink my teas all day long and I only have very little issues.

The pain in the back is still there, just like a nag, and only from time to time I get the "big" pain, the same as it was in May - but I noticed that if I take an aspirin when it starts, then go stand in front of the A/C and take deep breaths it eases tremendously. Maybe try this, it might help you too?

I was thinking too of bringing the nurses something for my last tx - not sure yet what. There are like 5 or 6 of them there. I forgot to tell you guys what we (well my boyfriend more than me lol) did last time. There is an elderly nurse there, who is VERY incompetent - she is the one who practically caused my adverse reaction at the first treatment, she set the drip to a high of 300 ml/hr and immediately left. She only had done maybe 5 steps when I started the reaction, and one of the male nurses (there are two male nurses) who was about 20 feet away got first to me, while she was still turning around. This elderly nurse has always a very sour face, and looks at us with disapproval - see, my boyfriend is much younger than me, and in the beginning of that first time, when she came to change the IV bags in the beginning, she asked if he was my son, and he defiantly said "no, I'm her boyfriend". Didn't settle well in her stomach I guess. Anyway, last time, she was the one who came with the whole package and started arranging things to start the IV, and my boyfriend asked her to send one of the male nurses over for my chemo. That definitely added insult to injury for her, and you should have seen the looks she was giving us! She still managed to come change one of the bags (looked like she was in a hurry to do it) and had set the Benadryl so fast my arm started hurting - and my boyfriend went and got again one of the male nurses. And gave her some very nasty looks (you can imagine how nasty looks look coming from an Army Iraq vet!). Cracked me up to see her face. I know I might sound mean but she hurt me. 

for redbarb and those who have a cough + reflux.

I've had chest pain, cough, and wheezing with every tx. I have a history of asthma. Each tx has been a bit different. The first two came along with a very wet cough--after the third the cough was dryer and seemingly more random. After the 3rd tx, the onc sent me in for a chest ct to see if my lungs were reacting to the taxotere. The ct showed "possible pneumonitis" but nothing serious.

Anyway, off to the pulmonologist I went. He did a bunch of  tests and came to the conclusion that my breathing is compromised somehow (I couldn't exactly figure out what he's talking about). Anyway, he believes the cause could be one of two things:

(1) Reaction to cytoxan or taxotere

(2) Acid reflux going to my lungs (reflux caused, of course, by the chemo)

So I'm on prilosec 2x a day plus a high dose of inhaled steroid (advair 250/50) and back to the pulmonologist next week.

So, with all these drugs, the coughinng and wheezing seem to me to be improved,  but I alternately feel like a child's corset has been strapped around my ribcage and is squeezing me, and and elephant's foot is pressing down on my chest. Not a great feeling!

I'm done with chemo and at this point just impatient to start feeling better. Oh, and my blood pressure at the pulmonologist? 79/59. No one seemed concerned...but WHAT?!  Sheesh...

Having a bad weekend as well.  I just don't know how much more of this I can take.  BF is doing his best with the baby, but he's such a handful.  He cries and I'm stuck laying in bed crying.  We have some help, but not enough.  I just don't know what else to do.  It just breaks my heart to have to just lay there and watch my baby cry and not be able to help or pick him up.  BF is doing an amazing job; I'm so proud of him, but this is just about killing him, too.   

Judy ~  good luck tomorrow.  My 4th TC is this coming Thurs.  Will be thinking of you....