Starting Chemo in April 2014

Swissmiss

timbuktu...wow, you DO know what I'm talking about.  I am sorry you have to deal with this type of stuff...it's so hard to concentrate on healing when you are constantly questioning if you are getting the best care. 

My family only recently moved here, to the middle of nowhere, near Tulsa, Oklahoma.  We moved here from Minnesota, where they offer world-class treatment at Mayo and the U of M.  I question each day if I should have just bunked with my sister and her family while undergoing treatment back in Minnesota, instead of staying here in OK.  The bottom line is basic competence.  I don't think I have a complex diagnosis, but there are so many things that have been missed, it makes me nervous thinking my LIFE is in the hands of these people who just don't care if they do a good job.  I had my initial ultra sound diagnosis of my tumor back in December, and didn't even get a an appointment with an oncologist until the last week of March.  I often sit in one of the many waiting rooms I spend time in, and am convinced I am the only person in the office who cares about what is happening to me...it's a very frightening, lonely reality.  

I may not find what I'm looking for in the doctor I meet tomorrow, but at this point I need to feel I am doing something to turn this negativity around.  

brigadoonbenson

Every time I have had a surgery I have gone on YouTube and watched the procedure.  I have always felt more in control and more relaxed about the surgery.  Tomorrow I am having my power port installed and I just watched a YouTube video on the procedure.  I am freaked out. 

Would anyone who has had a port installed please give me some feedback.  I was told that they would be using the same type of anesthesia they used to do a colonoscopy.  In the video the patient was awake and could feel all the pressure and probing, etc.  Is that your experience?  Are you glad you got the port?

Timbuktu

Trina, if I were you (and I kind of am) I would go to Mayo!  You should not have waited that long for treatment.

When I needed my hysterectomy I called sloan and told them I needed it immediately.  The nurse emailed the surgeon and he operated in less than 3 weeks.  I am not a naturally aggressive person but I found that the squeaky wheel gets the grease and being polite and patient is counter productive.  You are right, you care more about your life than anyone else.

Longislandl8y

I wrote this today and wanted to share it here:

Don't Forget

Don't forget about me

I've lost a bunch of stuff

Dropped my inner compass

Crawling through the brush

Reaching out my hand

Sun behind the clouds

Slowly moving forward

Peering through the shrouds

Smile as you hook it up

Kills all in it's wrath

Knocking down the spirit

As it runs it's ugly path

Actions and reactions

Create a sickly haze

Do you even see me

Can you hold my gaze

Did you see me yesterday

Playing in the river

Naked on the shore today

Crying in a shiver

Don't forget that

Life is love

Strength & hope

A peaceful dove

Today's despair

Tomorrow's dream

Things aren't always

What they seem

 

amyo

Hello - I usually post on May Chemo but have been reading all of your post often.

Brigadoonbe - I had my port put in 2 weeks today. I was put out with anesthesia and it was easy; I was under maybe a 1/2 hour no pain and within an hour I was on my way home, wasn't too groggy either. I was stiff for a few days but never in pain and now I'm used to it.

I had my 1st AC treatment 1 week today and feel great. Fortunately I never got nausea or too fatigued, I had swollen gums abou day  4 days and gargled with water, salt and baking soda which ended that quickly. I kept waiting for the ball to drop but didn't happen. I have been reading many of your post saying round 2 or 3 are far worse. Has anyone felt the same on all rounds of AC? Staying positive that my 2nd round next Tuesday goes as well as the 1st.

 

Footballnut

brigadoon I had a port inserted on April 29 the day before my first round of chemo. Mine is actually the same as what they use for a child because it was inserted on my right dude where I have no breast muscle. I was told that they had to put it on the opposite side of the breast cancer

The procedure was truly nothing even though I was nervous as hell

The longest part was the prep. I was in a room full of nurses who prepped me. They hovered me and prepared the area. They taped me down, put oxygen in my nose, put something on my head, sterilized the area. I think that this took about hslf an hour. Then the radiologist came in

I felt a pinch when he injected the freezing. Then he injected a sedative and next I knew I didn't care what he did. We chatted about hockey. I felt nothing

My hubby said that the whole thing took about 90 minutes. 

When they were done they wheeled me to an area where I recuperated for spprox30 minutes then I walked out with my hubby and got my bloodwork done using the port

As my chemo was the next day they left the port active meaning that the needle and IV was still inserted. It was fine

I felt a tad sore afterwards for approx a week and it was a bit difficult to get comfortable when sleeping but I don't even notice it now

I do weights and was told that I can swim. I don't feel needles going in Ike out and live it just like I was told I would

I get nervous before any tests and procedures but this was really nothing

Let me know if u have any other questions

Swissmiss

brigadoonbenson...I went under general anesthesia for my port, and I would recommend it.  I did the same as you and saw the procedure online and was so freaked out, my anesthesiologist was more than happy to let me sleep through it.  Best of luck to you!

jhodro

brigadoon: i had my port the day before my first infusion. it was under general anesthesia, but it took total of about 20 minutes. I was in good shape the rest of the day, a little tired, but no problem. The stitches weren't bad (i have it on the opposite side from my lumpectomy, which I guess is required). I have 'emla' cream that I use over the port (even when the stitches were there), and with most of the nurses, I don't feel much of anything. I didn't want the port (another surgery), but it really is a huge benefit. I also had a little trouble sleeping the first few nights since both sides are messed up, but I'm glad I have it. Good luck!!! Oh - I have had a nurse tell me not to do certain exercises, but the physical therapist, the BS and the MO have all said do whatever as long as it doesn't hurt. 

EverForward

when I had my port installed they gave me  MAC anesthesia, aka Twilight. Some people stay awake, but that stuff puts me out completely. It wasn't a big deal. 

merg

Hey Ya'll, Whenever I am at any docs & it starts to take too long I usually get up & open the door. I stand in the door frame & just watch. The nurses ask what's wrong & I just say nothing, I'm waiting. I had one nurse tell me about patient hippo laws & I told her I could hear everything through the walls anyway. I don't know if it hurries them along but sometimes I think it does. It lets them know that I am still here. I was also told I couldn't read my chart after I took it out of the door. It was mine, I kept reading it anyway. I ask for water, I ask for the bathroom, anything to let them see me.

I think Footballnut is a very smart lady.

I get the pity looks too but if people want to help me then I'll take it.

I've been trying to use all the dumb comments to remind women to get their mammos. If they ask about my cancer then I tell them all about it.  Too many women have stupid excuses not to get it done. 

Feeling good today. Rest easy Ya'll

merg

I love it Longislandl8dy. Very true.

MommyQ

Blueberry4:  My guess is that our hearts are pumping faster since we have fewer red blood cells than normal, so it's struggling to get oxygen everywhere. I'm a bit concerned about the long term effect to our hearts, but I guess there's nothing we can do about it if we want to kill those cancer cells.  And we do!

mmtagirl: Hey, we did the ice cream run last night too! My husband and 10 year old picked it up and brought it back. It was good. We had turtle sundaes. Ice cream seems to be one of few things that still taste right to me with my chemo tongue, so I'm going to keep indulging in it! 

Timbuk2: I don't like people seeing me bald either. I guess it just feels weird. At home, I don't cover up, but as soon as I need to leave the house, I cover up with something. Even to check the mail, I put on a hat! I guess I don't want the looks and don't want to have to explain to everyone what's going on. I like my wigs though. They look very realistic, so I wear those when I am going to be out in public for any length of time. I was fearful originally of them falling off, but have gotten more confident since I've been wearing them a couple weeks now, that they aren't going to fall off. I'm not normally a hat wearer either, so wigs are an adjustment. Best wishes and good vibes out your way for your CT scan.

Swissmiss: Good luck with the new MO. I'm glad you're ditching the old one, who wasn't providing very good care.

Brigadoonbenson: My port was installed under local anesthesia with sedation. I was freaked out about it before the surgery, too!  It took 45 minutes total. I remember nothing from the time the sedative went into my IV drip to the time I was in recovery. Immediately after the port install, I went to see my PS to get my mastectomy drains removed and my first TE fill.  I felt pretty normal...no nausea or sluggishness.  I had bruising in the area right under the port, which remained yellowish for about 4 weeks. The first few days after surgery, I had muscle pain in my neck due to the way they positioned me to get the catheter inserted into my vein. I took ibuprofen for it. Now and then, I get the neck pain again, but it's not as bad as the day after surgery. I don't feel the port now.  I'm glad to have it so they don't have to find a vein for each infusion. The needle stick into the port isn't as painful as the IV needle stick.  Plus, I was told the TC drugs really damage the veins in the arm and hand, so they didn't want to do that. Best wishes on your port surgery. Don't worry. It'll be fine. It's pretty minor as surgeries go.

Well, it's my bedtime. Have a good night! I hope tomorrow's a better day for everyone!

Blueberry4

Why can't people just be nice and compassionate? I want to be shocked at all the stuff people have said to y'all, but I've experienced it too.  I never have a comeback, so I just stare at people.  And the looks of pity with the "but how are you really?" comments, I can't stand them.  It bothers me that I am somehow put on unequal footing with people because of the visibility of this "condition" (thank you footballnut).  People know something about me just by looking that I maybe didn't want to share.  

Longisland, I love your poem!  It captures so many feelings about this ordeal. Are you a writer?

Swissmiss, good for you pursuing a new MO.  Those wait times are unacceptable.

Brigadoon, my port was put in under general anesthesia.  I really didn't want one but my MO and BS ganged up on me and talked me into it, and I'm glad they did.  The surgery was 20 minutes, and the recovery was pretty easy.  I had bruising, a little soreness, and a pulling sensation for a week or two.  I use emla cream about an hour before it is accessed and never feel any pain.  If you use emla cover the sight with plastic wrap to keep the cream in place and from getting on your clothes.  I hope this helps.  The description of this procedure was so much worse than the reality. I will be in your pocket, as they say, with prayers and good thoughts.

Someone is getting a CT scan tomorrow, but I can't turn back the page or I will lose my post.  I will flip back when I post and find out who, and will be in your pocket with good thoughts and prayers as well.

Blueberry4

Timbuktu, I flipped back and found you.  Prayers and good thoughts for your scan.

Timbuktu

Thank Blueberry!  Flipping back just to see who it was...that's so kind.  Prayers for all of us!

linda505

Good morning April sisters.

Timbuktu - in your pocket today - sending positive thoughts on the scan today - clear clear clear.

Brigadoon - I love my port and make them use it for blood draws and tx - so much less pain and less invasive to me.  

Swissmiss - good for you on getting a new MO - hopefully you find one that you feel comfortable with and have confidence in.  

Feeling better this am - went to MO's yesterday - RBC and HGB were both low - but not horrible - but that explains the extra fatigue.  Bad news is that I have a UTI or start of a kidney infection.  I was pretty sure that was going on but hard to distinguish SE from other symptoms now a days.   I don't think I have had a UTI for over 10 years.  They are sending it out for culture but MO prescribed bactrium for me - UMMMM - I am highly alergic to it - think emergency room can't breath allergic - told them that day one - should be in my charts but no LOL - so then he tries to give me CIPRO - had very bad reaction to that after taking it for one day a few years ago - told them all about that also - apparently also not in my charts - ughh.  Nurse then said well what does work for you for a UTI  - I said ummm - idk - haven't had one in so many years that I have no idea.  Lost a bit of confidence in my team yesterday over this. 

 I think that at times I am in a cancer factory - going to a cancer center - I watch people go in and out - so many in a day - i think it is sad.  The nurses are wonderful though - so caring - give you whatever time you need - really listen to you.  And I do like my MO - although I really think that he sees way to many people - I know he doesn't remember the details of my case from one appt to the next - although he does remember me as a person - he does reread my chart each time and rehashes everything.  But as in all things medical - we have to be our own champion and guardian in this.  

Footballnut - that lady at your LGFB class  - what a jerk - can't believe that someone with BC could say that in a room of women with BC - and she couldn't be more wrong about her statement.  I mean how can a positive be a negaitve??? LMAO.     Anyway - you know and I know that we have a very  good prognosis - and we have magic herceptin too!!  No worries my friend.

Wishing you all many SE free days 

Jaimieh

football nut the lady I. Your LGFG class has obviousy had her head in the sand to long to know that triple + has a ton of highly effective weapons. Hang in there she a donkey. 

Timbuktu- hope your ct is nice and boring today. 

So 

 Is in the books. One more AC to go. 

Footballnut

good morning!

Just to continue the chat about people and comments; staring etc. being born the way I was I've  experienced this my experirnced life. 

Oh you poor thing. - I'm not poor and not a thing

How do you mange? - same as you

You look so wierd /different/strange/funny - that's what makes me unique. I am different and proud to be

Then I went through things like not getting picked in school to play sports in gym. I've heard you can't catch a ball, swim etc Well I was a goalie in hockey and will STILL play, played baseball, football, play guitar using a prosthetic to hold the pick, swim, do weights, ride a bike, tie my shoes, cut a steak and on and on. Lol

Comments and stares all made me stronger. It pushed me to never give up or give in to others. If I want to do something, I'll find a way

Did I have escape mechanisms?  Sure. I dressed up as gene Simmons of kiss which forced people to look at something else first other than my arm

Now I've survived breast cancer and comments continue. If I want to go bald I'm going. Will I feel a bit uncomfortable?  Honestly - yes. But people will be looking at something other then my arm. Lol

Overall I don't think that people intentionally mean to hurt us with their comments / stares.   It might scare them - force them to recall an experience close to home - or they just don't know how to handle things and don't know what to say. Or they ARE just stupid and ignorant

Isn't it human nature to focus on the negative?  I know that I've done that and still do. How often do we write a note to compliment someone yet are ready to share a bad experience?  It doesn't make us evil - just human

I have a big mouth and am always ready to share my opinion. Now I've tried a different approach. If I get stared at - yes I STILL have to say something - lol - I'll say do you have something that you'd like to ask?  Depending on the person sometimes I might be a bit sarcastic. With children I'm very understanding. They are the only innocents

The dumbbell who was at the LGFG class that I went to said domething stupid. I agree with the comment that she wanted attention. I believe that she is scared stiff of her condition and inside is very scared and weak. Of course I STILL wanted to say something but the glares from my cancer sisters did it for me

So I believe that I have a slight advantage of dealing with the " idiots of the day". Lol

Try to be strong - let the comments and stares fuel your strength. Remember that you are unique and special and beautiful. You are loved. You are friends, mothers, sisters, cousins, aunts and on and on. We are united and we rock!!

It is for reasons like this that I always shared my message when playing with my band - don't judge people by how they look

And honestly wouldn't you glance at this? I sometimes catch myself looking !!  Lol

Footballnut

I mean really?!!!!!!!  I got my period again!!!!  Seriously???!!!!!

merg

Hey Footballnut! Oh No! Not that!!!!!Other than that you sound good. Just saying hi.

Tinkerbells

footballnut- you are beautiful. And laughing about your period! I agree! Could that one variable be off the table for us?

mikishelley

Good morning ladies! There are so many posts on here since the last time I posted I can't catch up. Must be the smartphone thing. I don't have one! Anyway I hope everyone's day is uneventful, positive and beautiful. Stay strong and beautiful!

Footballnut

I called my nurse and said really?  I just got my period. She spoke with my MO while I was in the phone. Yup. Nothing to worry about. Worried?  No !!  Pissed?  Yes!!  Lol

I started getting cramping yesterday in my lower back and stomach and thought - eh - just more SEs. And then this thing!!  Lol

My body was starting to "change" last sept prior to all of this nonsense and my MO said that this is normal

I want to file a complaint - I thought that this would stop!  Plus I just spotted 3 weeks ago !  It's not even a full month!!

Lol

I just ate my sugar frosted flakes - remember sugar can feed cancer - and I'm going for a walk!!

Lol

applepop

I just a text message from my sister in law explaining to me how I need to stop chemo and start essential oils. She went on to explain to me that the chemo is killing my good cells. BLAH BLAH BLAH. I already feel bad and somehow this text made me feel worse. 

Timbuktu

apple, i had  a friend who, after i described the difficult time I was having with side effects wrote me "stop the chemo!"  So strange!  It puts me in the position of choosing to suffer.  If I didn't want to suffer I would just stop.  Does she realize she's telling me to risk my life?  

When I was on arrimidex and taking a class, a classmate (a therapist no less) saw the pain I was in and told m to stop taking the drug.  I tried to explain why I couldn't do that but she was still certain that I should stop.  lol

Luckily we were with a mutual friend who is an ICU nurse.  She said "She wants to be around awhile and this was prescribed".  People can really be puzzling.  When I saw the mutual friend a week later, she told me "I hope you know that I will respect any decision you make."  Huh?  Therapists can be scary!

applepop

Timbuktu- I just thought what would she do if she was in the same situation. I certainly do not want chemo, but kinda feel it is necessary if I want to see my kids grow up. I could be wrong.

 I want to feel healthy again.

Rosiesride

hi girls...I will have my last TAC infusion Monday June 2!! Woopwoop!  Coconut oil has been my saving grace for rashy face..1/2 avocado oil...at grocery...and 1/2 coconut oil...my scalp hurt due to stubbles...I tried scrubbing my stubbles with a wash cloth in the shower...it was still such a mess!  So I asked my smooth shaven husband how can I get my head to feel smooth like his?  (As much as he would sit in the car with his electric shaver and shave his head on our way somewhere, I should have remembered)...so I took electric shaver and shaved a smooth head...now, about 5 months later 5 treatments later ...I feel the stubble growing back...it hurts a little but you KNOW I am not shaving it now!!  So if your head hurts due to stubble...maybe shave it??  It didn't bother me emotionally as I know this is all temporary...patience is a virtue they say...Rosie

Timbuktu

Apple, that is a fantastic response.  These people are just not thinking.

I had a similar experience with an onco.  she was telling me how I really didn't need chemo.

It will "only" give me a 7%-10% protection against recurrence.  In frustration I finally asked her, point blank, "If it were you, what would you do?"  That changed everything.  She stopped in her tracks and thought really hard.  Then she said "I'd do it.  And I'd do all 6 infusions."  I have to remember that for the future, make it personal to them and everything changes.

Mompv

I am still lurking here as I don't start until June, my MO appt is tomorrow.  You all have been an encourgement to me. Your positive attitude despite your SE's and peoples comments are helping me not dread it as much. I still dread it but not as much. I just had someone this morning show me an article from John Hopkins on how sugar feeds cancer, it was actually an email and is debunked on snopes. I had another person show me an article on how cannibus oil is a cure for cancer. I know people mean well but...enough already!

So, thank you to all of you for sharing the good, the bad and the ugly of this.

applepop

Best wishes Mompv.