Chemo June 2010

Hi - it has been a bit since I posted. I went for my second A/C chemo last monday arriving at my appointed time of 9:30 AM. They could not get a good return on my port so they pushed some heparin and when that did not work they pushed something the nurses called "roto-rooter". All this of course took time - my port area was in mucho pain and finally the doctor came in and said I had to go up to radiology for a contrast x-ray where they insert dye into the port to make sure it is OK. Well it was not OK and I had to wait at the hospital till 6PM until my surgeon - who was at the hospital could correct the problem.

So, I had another surgery - anesthesia etc. - got home around 9 PM. It was a stressful and emotional day. When the nurse gave me the little warming suit to put on in the pre surgery center I burst into tears.

Needless to say I have lost my faith in the port - today is my next #2 chemo - my oncologist was on vacation when this happened. So my schedule is off by a bit more than a week, but he said not to worry. This port better work today...

BTW - hair is almost totally gone - started about 15 days after first A/C treatment. 

Hi Bon,

I am the same as you. Shedding tons of hair. I think you just have to let your girl friend go for it. it is nice to have a friend with you and it will be a very personal experience. I will have to have my hisband do my tonight. I am not looking forward to it but hell it will bbe over and done with. I think it maybe a burden relieved once you actually have your head shaved

 Take care,

Trusting

Miss Kitty-  You are probably too young to remember Miss Kitty on Gunsmoke.  She was a gorgeous, gutsy broad who owned a bar.  I loved her, fitting to be her namesake.  I LOL at your witness protection program comment.  This is your opportunity to dress up as anybody!

lizzyanne-  Oh my!  That sounds like a brutal day.  Back to my favorite Mother Theresa quote:  "God doesn't give you more than you can handle, I just wish he wouldn't trust me so much."   I hope things go smoothly from here on.

tmarina-  You sound like you are back to your perky self .Yeah, that housekeeping thing is calling me too....and I am ignoring it too!  I hope you have a lovely time with your dd at the"look good" class.  Smart to take someone young and "with it".  It's a miracle I'm still not wearing blue eyeshadow....though I hear it's back!

trusting-  Just think how cool you will be while doing all that exercise without your hair!  There has to be some benefit.

It's still stupid hot here in NYC.  Yesterday it hit 103, heat index said it felt like 110 with humidity.  I would not know as I am inside with AC blowing and saying my prayers that the electric grid keeps flowing.  Screw my Vitamin D levels for a few days, better than getting heat stroke.

To Trusting and all who gave me pointers on the head shaving exercise,

Tonight is the night. Trusting and I will be among the "beautiful bald" as of this evening. I have the champagne chilling, the chocolate calling my name, and a nice soft scarf ready to go. Will have conference call with friends in Alaska, California and NY on speaker to participate in the buzzzz with me. 

Am off now to wash and style my thinning locks for the last time. A difficult day but getting it over with will be a blessing. I hate waiting for the other shoe to drop, even it if is a ruby slipper ala DesignerMom.

Thanks for your support...and good luck tonight, Trusting.    Bon

I had my followup today, and it turns out that my "red boob" is cellulitis. My absolute neutrophil count was low (0.1 CL) so my oncologist sent me to the treatment room for IV antibiotics, and I'm now taking Keflex. I'm also under orders to stay home and avoid crowds till Sunday.

 I'm relieved it is cellulitis. I had half convinced myself it could be inflammatory breast cancer.

I have not posted much yet on this site because I am knew to all of this but here goes.  I have survived my first chemo of AC and Neulasta shot day after and am 1 wk out from tx.  No hair loss yet but had terrible blinding sick headache for first day after treatment with nausea but was able to not start vomiting by taking the Zofran prescibed for that.  Have had lesser headache with extreme dizziness and fatique that won't give you a break ever since then.  I mainly have had just those things except have to keep nibbling to keep stomach from being empty.  I have had a lot of digestive reaction with bloating and some pain but I guess that is normal.  I do not have a port or line.  My onc wanted to try without because he thought I had good veins.  My first IV for chemo was fine but wonder if I would have felt less awful if could have had Adriamycin in IV instead of straight injection into vein.  My onc nurse said could only put in IV solution if have port or central line that is clear.  The cytoxan was given in an IV solution.   Does anyone know more about  this?  I would appreciate any feedback before I go back to onc for blood tests and next chemo.  LOL,gin2ca

grneyd - i asked my onc and nurse the exact same question - they said it is a much lower dosage because it is weekly, and the side effects are fewer - absolutely no nausea, and the main problem can be neuropathy (plus hair loss, which we already got from AC) and damage to nails.

ciancotto1 - i found this info "Taxotere or Taxol, given weekly in relatively low doses, is very effective and is associated with fewer side effects (such as low blood counts, hair loss, and nerve problems) than when given every three weeks." here;s the link: http://www.breastcancer.org/symptoms/types/recur_metast/treat_metast/chemo.jsp. it's talking about stage 4, but i don't see why it would be any different for earlier stages.

gin2ca-->I have a port and my nurse still sits and slowly injects the Adraimycin into my port tubing.  She can not give it via IV because she has to watch it very carefully to make sure it doesn't leak out because it can severely damamge the veins.  The Cytoxan and other drugs she can hang and give via the IV pump.

Kaycee--> glad they caught it and gave you the IV antibiotics!  That is scary when your count is so low!  Hope it heals quickly!

Julia2-->I've had one or 2 people dismiss my cancer like that also.  Hello??  Its CANCER!  Jeez people!  Sometimes ya just gotta wonder...

Well, I went out to eat with my dd, and realized when I got there I really shouldn't be out in public right now.  Also, my other dd called and her babysitter didn't show up, so guess who's watching her sick grandbaby?  My other dd is helping, but grandma's gonna have to work her special magic to get him to take a nap!

T

latte-->I just assumed everyone had it (the adria) administered the same way.  The protocol where I go (Regions cancer care center in St Paul, a teaching hosp.) is to give it in 3 syringes over 5 min. each.  The nurse even has to stop occasionally to pull some back to make sure everything is working ok.  I'll look for some info on it too, but it is sort of comforting to me that they are being so careful.

T

Hi have you heard any info on taxol x 4 vs. taxol x 12?  x 4 dose is about 170MG  x 12 is 80 mg each

I honestly think that there are two types of 'insensitive' people.  Those who are just clods and couldn't spell compassion, much less feel it, and those who go into blind panic mode when they encounter someone with an illness. The clods are so self-interested that they either don't acknowledge another's illness or trauma, or they say something so stupid you look around to be sure you aren't on Candid Camera. The ones who go into panic mode are often friends who just can't face that something awful is happening to someone they care about or they cry instead of speak encouragingly. I have a couple of friends who took quite a long time to call or write because they admitted that they had a difficult time processing the information that I have cancer.  

So now I am giving email updates to approximately 75 people on a regular basis. I'm doing it so that they can understand up close and personal how this diagnosis affects me. Perhaps my reactions and issues aren't the same as everyone else with breast cancer, or any other cancer for that matter, but I've got their attention and they now know something about ports, chemo, hair loss, side effects and how they may be able to help in little ways...most of them never were this close to cancer before. They certainly know people along the way who have had cancer, but no one close enough to them where they could ask questions and get details. The list of those getting my journaling includes friends at a distance, colleagues, clients. They are supportive beyond belief and grateful that I've given them an inside view on how I feel emotionally and physically as this entire scenario progresses.

Each time I write to them, I tell them about all of you and how grateful I was to find you here. You understand what I am going through when I will be shaving my head tonight because you've been on this ride. They will learn about it all and, I hope, be so much more compassionate the next time they encounter someone going through a battle similar to this. They will never again be able to say they didn't know what is entailed with a cancer diagnosis, even if it is 2nd hand. And I'll always pray that they never have to be in our shoes. (Although those ruby slippers that DesignerMom is sporting are mighty nice).

Wishing you all a good evening. I'm off to see my own Wizard this evening...the one with the shaver!  Bon

Designer Mom - I like your shoes because they're sparkley!  I like anything sparkely. 

One more thing before I check out of here for today.  They started my pre-meds and about 30 minutes later I was feeling light headed, so I mentioned it to the nurse and she said that was normal because of the anti-nausea meds and Benedryl.  They did not start my drugs until an hour or so later.  By then I was comatose and pretty much stayed that way for the next 2 1/2 hours until my treatment finished.  People all around me were talking and their voices sounded like they were far away and I felt like I was floating around the room on a cloud.  It was kinda nice.  I was finally getting some rest.  When it came time to go home, my husband got me up and I stumbled out holding tightly on to him. As we left the nurse said to my husband, "she's an easy drunk isn't she?'  I just turned around and said loud enough that several people could hear, "I'm not EASY, but I am cheap!"  Oh my stars! ! ! My husband couldn't get me out of there quick enough!  LOL! 

Okay, I'll quit and give someone else a chance to pop in.  Love you guys.

sherry-  You have me laughing out loud!  I bet Mother Bombeck is laughing too!  Your DH must know you are going to be just fine if you can whoop it up like that in chemo.  About your new chemo regimen.  As you seem a little puzzled by the new regimen, and you had such an awful time with the other one, it would be TOTALLY normal to get a second opinion. It concerned me that your Onc didn't bring you in when you were SO sick.  As a matter of fact, most good Oncs ask if you would like a second opinion.  They should never think that it is because you are doubting their recommendation, simply that you want to confirm it is the best aproach.  This is YOUR life, you have to be sure of your treatment.  

Bon-  I totally agree that SO many people just don't know how to deal with someone with cancer.  I think it is sort of like I used to be about babies and kids.  I THOUGHT I knew what it was like to have kids.   NOT!  Until I had my own child, I really didn't have a clue.  I now think back and am embarassed about my sometimes intolerant attitude about kids.  That old "until you walk in my mocassins" quote is so true.  I commend you for taking the time to help the people in your life become more comfortable with cancer.  

And yes, The Wizard of Oz has to be one of my very favorite movies.  I sang "Somewhere Over the Rainbow"  to my son at bedtime every night (when I wasn't spoofing on him and singing "Somewhere Over the Bananna").  I believe ANYTHING is possible, just like in the movie, and that includes long, healthy, happy lives for all of us.

On a related note, I am still trying to find time to make a sign for my bedroom office that reads "No one gets in to see the Wizard, no way, no how". 

Interesting to read how some girls are managing with their ports. I got my port installed a week ago. It hasn't been used yet...next chemo is July 16.  Apparently it will be easier... the onc nurse made 3 - 4 attempts each time for the IV.. rather painful.  My forearm is still sore from my last chemo. I am on FEC100. Don't know how long to expect the pain to continue in my arm. Is the damage to the veins permanent?

I too have been surprised at how insensitive some people can be. I had an appointment with my family doctor. While in the waiting room, the receptionist came to sit next to me... I've known her for about 10 years. She lowers her voice and says. Don't worry, everything is going to be just fine. I said, I hope so. She again insists this cancer thing is going to be just fine, you'll see, it will be over before you know it, no one even gets mastectomies anymore, and everything will be back to normal before I know it. I was fed up with this approach as it seems to minimize what I am going through. I looked at her with wide eyes and said, Oh really? How do you know? That's not the information the oncologist told me. Do you think he made a mistake? How can you tell which patients will recover well and which will not do well?  She sputtered a bit and went back to work. 

When I got in to see the doc, I told him that we both know people whose outcomes with breast cancer were not good.I think it's irresponsible when his receptionist tries to be compassionate by making assurances that are inaccurate. I hope and pray for the best, but this cancer thing is a lot of work, without any guarantees. Maybe I was mean with the receptionist, but I am facing a mastectomy, a long and difficult battle, and alot of unkowns. False assurances doesn't change that.  

Well, that's my vent!

Yeah, I had a talk with the nurse about the Adriamycin - aka the red devil.  She pushes it through my port, too.  She is constantly checking to make sure it's going where it needs to go.  She suits up in this hazmat looking attire because she cannot get any of it on her.  she says it's like battery acid.  Nice to know it's going in my body.

Maybe I should get a hazmat outfit to go along with my Witness Protection Program look!  LOL!