Chemo June 2010

Hello Ladies!

Thank you for such a warm welcome.  It sure does help to read your thoughts and descriptions of what you're going through! 

Beanius, DesignerMOM and twinmomjackie, thank you for your personal welcome. That really made me feel good to have a loving response.  Well, I figured I would with such a special group of women!

Kittycat - I'm so sorry to hear about the delay in your treatment!  Keep your chin up Honey!

DesignerMom - Thanks for the info about the scarves.  I will go to their website for sure!

jenweg - I really appreciated your description of how you felt after chemo.  I'm sorry you had to endure that.  I guess it's par for the course, huh?! 

tbyrd - Thanks for the info about Look Good Feel Better.  I'll for sure look into that!  Also, I really appreciated hearing how the treatment made you feel.  Hmmm, what are we gonna do ladies???It's all part of the whole dang process! 

I had my PET/CT scans yesterday.  MUGA scan tomorrow and Chemo starts on Friday.  Here's a big hug to all of you.  Thanks for being there!

Had my first chemo yesterday. The nurses were wonderful. They made me feel very comfortable and explained everything that was going on.  My port acted a bit funny when she was trying to get blood but had no trouble with the chemo. I didn't cry but did have a brief "weepy" moment. 

As I was sitting in the waiting room - a woman came bouncing in with her scarf and baseball cap on and carrying her "bag of distractions" as I had. I was shocked as she had a big smile on her face while I was trying not to just burst into tears. Turns out that we shared a room and this was her last chemo treatment. We chatted a bit but it was good to meet someone at the end of her treatments- as I tend to not see an end right now. 

I came home and was very tired - took a nap and then managed to sleep thru the night with only one wake up. Happy right now that I don't have to go back for 2 weeks but am keeping my fingers crossed that I don't "crash" too hard with side effects in the next few days. Get my shot today and hoping that the headaches aren't too bad. 

Going shopping for a wig this week with DH and my son's girlfriend who is a hairdresser said she would come to the house and shave my head when I am ready. I did cut my long hair short about 3 weeks after my diagnosis. It was easier to deal with thru my 2 major surgeries. 

To my AZ friends - My oncologist says he will do his best to make sure I get some of that nice AZ weather this winter. In fact, if any of you can recommend a good oncologist - not too long a drive from Anthem, I would appreciate it. 

Love to you all...one day at a time.

Liz

After 2nd infusion of Taxol & Herceptin, feeling pretty good EXCEPT I could not go to sleep last night!!!!  I was awake until 3:30 a.m. or so...just messed around trying on my wigs, scarves etc because I was soooo wide awake (opposite of last week when I 'crashed' for hours on day 2 post chemo)...I thought I'd sleep half the day away, but woke up at 7:30 a.m.  I think it must be some of the pre-meds, maybe the Dexamethazone, I'm not sure.  Has anyone else had this happen.  I'm a little worried about the 'crash' that might hit either later today or tomorrow.  I'm awake, but feeling very fatigued. 

SKD & Laurie Z & PennStater~ I am also checking my head daily, just 'watching & waiting' for my hair to start falling out... and, the scalp tenderness, I have heard of Paul Mitchell products that help to ease the sensitivity of your scalp, and lots of info about Nioxan being used.

julia ~ I've heard a lot of good stuff about the "Look Good, Feel Better" Classes that are offered.  I've been trying to decide if should go now or after my hair falls out.  I thought I might sign up for one in July, when I'm a little further along with my chemo.

lauriz-I'm so sorry you had to be subjected to such an insensitive, down right barbaric oral surgeon.  Why do they become doctors if they don't care about people!  Glad you are weathering the storm.  God bless your sister for giving them he__ when you were unable to!

meliss-Welcome!  You will find these girls are the best as you go through treatment.  I have an 11 year old son and I, too, have found humor to be very helpful in relieving his anxiety.  After the PET scan, when I couldn't be near him due to radiation, I would act like the the Night of the Living Dead monster and say I was glowing in the dark to alert him that I was coming down the hall.  They may be big boys, but they are still little kids inside.

SKD-okay, you have crossed another "I have never done this" moment.  The hair is off and you are on to the next thing.  Just like everything else you didn't know if you could do, you did it.  I'm proud of you.

kittykat-Nothing like finally getting a competent technician.  If you feel up to it, I might write the head of the Radiology facility and point out your experience.  They need to hire competent people or retrain them.  These tests are crucial in deciding life-impacting treatments!  I had retail stores all my life.  My policy was "if you like what we do, tell your friends. If you don't like what we do, tell me".  They may not even know this person is incompetent.  And YES.  I would go and park yourself at your doctor's office.  Nothing like the squeaky wheel smiling at them from the waiting room to get some action.

It is a beautiful, sunny day and I am off for a long walk in the park with my handsome son!

Wow! Some great udpates and posts going on here.  I love it!!!  First, to all the new June peeps - I survived!  Today was my first TX and I survived.  I had (AC) or the Red Devil - boy it is red and what pretty color it changes your pee too .  I too was given ice chips to munch on while it was going in.  My IV site got a bit cold so they gave me a warm bag to put on it.  That was helpful even afterwards to curl my fingers around because sometimes they get so cold anyway.  The Bevacizumab took 90 minutes but went fine.  Next time that will only take 60. If I tolerate it ok at 60 they will move it 30 for the 3rd treatment.  Here's hoping! 

 Now for a recap of the "not so smooth" part of the process - I called the doctor on Friday and asked that since I had to come in yesterday for labs could I please pick up all the RX that he was going to give me to be filled so I wouldn't have to do it after chemo.  Yesterday, the nurse did give me the compazine RX.  She told me I probably wouldn't need it today because of all the nausea drugs in my prep but I should fill it to have if/when I need it.  She told me no other RX.  We get to the office at 7:50 am for my 8:00 appt and the desk sends me right down to Infusion.  The Infusion nurses never call me so after 15-20 minutes and every one else around me going back I went back to reception desk and confirm I should be in the Infusion section.  "Oh yes, that's where you need to go".  So, we go back and I even go into the Infusion suite.  The Onc nurse ask my name and tell me to take a chair.  25 minutes later when they can't find my chart they figure out that I am supposed to be up in the medical office section to meet with my Oncologist first.  He of course has decided by now I just didn't show up.  They have to track him down.  My husband who has been my rock and calmness since the 1st minute of the diagnosis comes a bit unglued!  All I can say is thank goodness they took my blood pressure and not his!  Anyway, the Oncologist proudly gives me a RX of Emend. Where was that one yesterday????  Ah well, we filled it after chemo and I immediately popped it in my mouth.  Hopefully it will be ok. 

 I am still having those hot flashes but Dr said he hopes they will pass soon but told me to stay away from anything that remotely looked like soy.  So for now, I am sticking my head in the freezer from time to time when hubby isn't looking and I have the fan positioned 100% on my side of the bed.  Are we having fun yet?

Seriously though, I can't thank you guys enough for all the words of wisdom and support.  I am so glad to have 1 treatment down.  I knew I couldn't be done until I got started.  Thanks! 

Haha RS711, I am on 13 and I notice that when I blow my nose, nose hairs are coming out too.  I guess when they say you lose all your hair, they aren't lying!!  Are you getting cytoxen?  That can cause burning in the sinuses.

twinmomjackie-  Thanks for the "breath cancer" !  I haven't laughed out loud like that since my girlfriend typed "nymph lodes" instead of lymph nodes.  I've been calling them nymph lodes ever since.  Thank God we can laugh at some things.  It's like a breath of fresh air.

kittycat-  Yeah!!!!  You nailed it down!  It's pretty nuts that we have to fight so hard to confirm a miserable procedure that they are charging huge money for!   I guess they just have way too many customers waiting. You will be in my prayers tomorrow.

grneyed-I know that feeling about trying to hold back your DH.  It must be so hard for them to feel helpless watching us battle all this.  When inefficient people make things unecessarily harder, delayed, I could certainly see my guy blow.  Last week my DH was scrutinizing every stain and messy thing in the whole area.  Sometimes it's better not to look.  I did refuse to sit in a chair that looked like someone had spit up in it.  When the tech insisted, I flat out refused saying "it's dirty".  She looked right at "it" and said "it is not dirty"!  By the way this was the same girl who I had to ask to wash her hands before drawing my blood.  When I recounted this to my chemo nurse, she seemed alarmed.  She later told me she took care of getting rid of the chair and said that same girl SAID she had been trying to get rid of it for two weeks. Have you guys noticed that lack of common sense is just rampant?  Okay, enough of a rant.  But DO insist people Purell their hands!

RS711: Yeah when they say you will lose all your hair they mean ALL. But of course with my luck I still had to shave my legs. Not as often but it was still very annoying. Definitely keep tissues at all times. As the chemo affects the lining of your mouth, stomach and nose. It may get very dry so blow gently. I got  couple bloody noses first time in my life!

Kittycat: Good news...squeaky wheel!!! I am often a squeaky wheel, sometimes people just don't realize how putting things off a week effects a person. Good luck with treatment!!

Wishing you all the best!!

Di

RS711: my chemo nurse told me today that nose hairs fall out also. I use a CPAP at night, and my nose and back of my throat are starting to get really dry and irritated. She recommended using a q-tip to apply some vaseline or aquaphor to keep things moist and prevent nosebleeds. She also recommended saline spray.

Good news Kittycat!  Good luck tomorrow!  And I think Sherry starts as well?

And Grneyd5600, sounds like overall things went pretty well.  I'm hoping for minimal se's!

I had a bit more nausea last night (my first day of tx).  I took a compazine about 7, then Zofran about 10, and finally an Ativan about midnight.  I stayed out in the recliner so as not to keep my dh up all night.  Wasn't sure if I'd be able to sleep, but knew I'd be up to use the bathroom!  I was actually able to sleep soundly from 12:30 to 6am!  I was very pleased with that--must have been that Ativan!  I took a Zofran, ate some saltines, and took a dex., then slept for 2 more hours.  I've had very little nausea today, just not much interest in eating, and tired.  I can do everything I really need to do , but not much more!  Took me about 4 hours to do the checkbook and pay bills!  Just moving slowly!

Take care!

ps  I'm excited to look at wigs tomorrow, and Thurs. I get a haircut!

oh--and does anyone know how long we have to keep up pushing the liquids (for Cytoxan?)--I'm getting tired of it already!!

add me to the list of people whose face is breaking out, not sure which drug to blame it on, or what to do about it. 

AAArrrggghhhhhhhhhh!

Helllo Everyone..Just in case anyone might need this tidbit...the nurses were telling us about "warm prune juice" as a very good laxitive...I take pain pills as well,from time to time for my expanders, so this is something I am going to try..I will keep you posted!

I plan to work through chemo. I'm a sales rep, so I can do a lot over the phone and through email. Everyone at work has been supportive so far. We'll see after I start. My customers get a little crazy sometimes!