Chemo June 2010

My cancer was also  not picked up with a mammo...dense breasts. I found it myself. I am happy to live in CT where I can ask for an ultra sound and will also be able to get insurance to  pay for regular MRI's on my remaining breast. Of course I didn't know this until after the BC diagnosis. 

Happy for you who are getting their ports taken out. I am still getting herceptin in mine until September.

Any of you rads gals have a good vitamin E creme to recommend? 

I am enjoying my time here in sunny AZ. My breast oncologist here is a hoot! She had me laughing as soon as I walked in the door. Love the decor in her offices too - very girly and she has a dark chocolate on the pillow in the exam room.  It's the little things.....

Have a great day all! 

Chey,  I am so proud of you.  I really wish we could have all been there to see you and cheer you on.

Kittycat, I am jealous of your 2 inches of hair.  How did your speech go on Sat.?

Latte, where are you in your treatment.  Do you have more surgeries left?

Shery, another snow day... You must be getting tired of the white stuff by now. Are you on a hormone blocker that is making your joint issues worse?

Bon, I truly hope you can get the insurance issues fixed.  It's tough to have to deal with that on top of the cancer.

My hair is only 1/2 inch long, very fine and sparse.  My scalp still shows alot and I feel still bald.  Any ideas to make it grow?  I have the next mammo in April.  What is the best test to do.  If I drove down to the States and got an MRI, what would it cost me and how difficult would it be to get? I really don't trust mammos and don't want to wait until advanced stage cancer shows up on the mammo again.

Love and Hugs to all, Mimi

mimi-  Did your BC not show up on mammogram?  Mine did not (14 mammos in 14 years), I found the lump while bathing.  My BS says 30% of BS does not visualize on mammos.  I will be getting mammos along with ultrasound every 6 months and MRI on the other 6 months.  I take it they don't do MRIs for followup in Canada?  Will they do ultrasounds along with mammos?  That seems to be much more accurate.  Heck, if you have to travel for an MRI, I would consider going somewhere where they are less expensive than here in the USA.  I actually know friends who take medical vacations to Thailand. They get excellent medical care at about 1/10th of what we pay. Thailand sure sounds good looking at all this snow.

So it has been a wild week here.  Saw the Rheumatologist on Tuesday.  He is not convinced I have rheumatoid arthritis but isn't ruling it out either.  He is running  a series of blood work studies and we will go from there. 

Yesterday I had my first "fill" in my expanders since my radiaton ended.  Nurse came in with 350 cc's.  I just looked at her like she lost her mind.  At 200 cc's I said "enough".  Well by the time I got home I was in so much pain I couldn't see straight.  I called my poor husband and said please come home I need to go the ER.  Unfortunately, he was involved in a car accident on the way home.  Someone hit him from behind while he was stopped at a stop light.  Totalled the car banged him up pretty good but he was able to walk away.   After that I decided to wait on the ER for me.  I ended up taking muscle relaxer and percocet which gave me some relief.

 Today I saw the Onc for my 3 month check up.  He checked out the expander area and told me to watch for infection.  He agreed that it appeared the PS overfilled me especially considering how much tissue and muscle constriction occurred during radiation.  Then, Onc handed me orders for a mammo.  I just sat there stunned - I said "um, I had a bi lateral mastectomy what are we going to mammo?".  He then said Oh then no you don't need a mammo.  Heaven help me - these are my care providers.  I know they have lots of patients but READ MY CHART before you sit down and write out orders.  Geez!!!!

Got to tell you girls I am so close to saying no reconstruction and just be done with it.  I have been in more pain over the last month and half then ever before.  Between the Armidex, the joint and bone pain and now the expanders I just want to get back to life as normal.

Ok, thanks for letting me vent!  I needed it.  Back to positive thoughts.

Hugs,

Jackie

tina-  Glad the insurance bill isn't accurate.  I've been watching the weather map your way. Brrrr!  My neighbor has been in Thailand for 2 months.  I think she has the right idea.  Now if I could only figure out how!

Jackie-  Dang!  Makes you wonder if these doctors know who you are!  Are they treating the right patient?  No wonder people get the wrong leg cut off in surgery.  My friend wrote on her good knee with a Sharpie "good knee, not this one" when she had surgery.  This is madness!  

latte-  So sorry your skin is burning.  Can they give you a break for a few days to heal? 

lizzyanne-  Glad you are enjoying Arizona.  You tell your doctors we like their style and bedside manner.  Tell them that Jackie's doctor needs some lessons!

cheyenna-  I know your situation isn't funny in the least, but here i am laughing out loud!  You could do a Saturday Night Live comedy routine.  1 800-diagnose me!!  OMG LOL!  I tell you, what we girls have experienced could be a comedy routine!  I'm sure glad we can laugh about the absurdity of it all!  Chey, just keep calling and pushing till you get satisfaction.  If you get some silly receptionist who won't give you an appointment, you can use my line "I'll gladly change jobs with you if you want to finish my surgery, take my cancer drugs, have my followups etc...".

Hey all....Sherry,so happy that you got that dang port removed and can cross that off the list.  Those things are great when they work and a total nightmare when they don't. I will keep all fingers and toes crossed that you never again in your life need another port. The word 'port' should now only mean left in nautical terms, a lovely destination in cruise terms, and a strong sweet wine off the spirits menu.

Ginny...glad your doc caught the rising vitamin D level and cut you back. If you remember I told everyone about when I had vit D toxicity from getting too much from all the pills and supplements my former doc was giving me. And I had to dx myself before she  finally did the test and believed me.

Chey, We will all be praying that the lump is absolutely nothing to worry about. But you might have something there. Maybe we could start a new thread here called 1-800 diagnose me...we would have one pat answer....we'd tell everyone to go get as many tests as they can afford to assure themselves that it is or is not something to worry about. And to advocate for MRI's and ultrasounds vs just mammograms.  Chey...you stick on them like white on rice until they give you an appointment.

Toni,I applaud you for working with the Breast cancer Coalition in Pennsylvania (spelled it out to keep my memory sells functioning). I know a few people still in that state and will mention the organization to them. One is an old friend who is a nurse practitioner with Planned Parenthood so she must have availability to their contact info.

Liz,I used the pure Aloe and that messy Aquaphor during and after rads for another month. Now I have a vit E gel from Walgreen's. don't know if it does much for my scars or not. Right after surgery I got pure Vit E oil in Walgreen's, too. I just don't like the oils because they just get all over everything, Your oncologist sounds like a jewel. From what I hear, you should stay in AZ as long as possible and avoid the cold.

Mimi...MRIs are supposed to be great for detection but a properly performed ultrasound can do wonders at detecting suspicious areas and cancers, too. They are far cheaper than MRIs and I think most everyone is safer with a mammo and ultrasound than with a straight mammo.  And for hair...well mine is about an inch long and it's coming in curly in the back, Straight as a pin everywhere else. And white with a tinge of black. If I put on some make-up and jewelry, it looks stylish. Can't decide if I'll keep it this way or not. Of course, I guess I really have to wait for 6 months to see what it will finally develop into.

Latte...YIPPEEE...can you hear the cheers all the way in Israel? I'm so happy you've finished with radiation but sorry you are in pain from burns. Wish I knew of a magic bullet for you to get over the rads SEs fast.  Glad you have the ooph scheduled and can move on with things. Getting all this stuff behind us and only looking forward will be nice, right?

Joan, You just want to go to Thailand to escape the snow!  How are you holding up these days?

Jackie,your whole post was one "oh, my gosh"...from the RA to tissue expander horror show to the doc who didn't know your mx status and wanted to send you for an mammogram...all I can say is YIKES. Praying for you that the RA dx doesn't stick. 

DMom Karin...well, you are the best cheerleader on this board. Bless you for being there for everyone. How are things going for you?

Tina...so glad your insurance issue was resolved in your favor. Mine is still up in the air.

Insurance is still a big problem for me. I did just get notified yesterday of coverage retro to Feb.1. But that doesn't address my January out of pocket nor other issues that have arisen. Golly, I just hate to wish my life away, but I can hardly wiat the few more years until I hit 65 and can get covered by Medicare.

And sadly, I got a phone call about an hour ago from a high school friend who was dx with bc last Monday. She sees the surgeon and oncologist next Thursday. And yesterday I went with my coworker for her visit to the plastic surgeon. Her dmx is scheduled for March 2.  I feel like screaming (got that soundproof room ready for me DMom?) because bc is all around me these days.

Oh one big positive is that for both of my friends who are newly dx with bc, I have been able to truthfully tell them that this website was a life saver for me. One of them has already been on the site looking at the medical questions and answers and the other is probably on it right now, looking for information. I can't thank the people at Breastcancer.org enough for building and maintaining this site or you all for the support you've offered so generously over this last year.

Hugs all around.  Bon 

(PS/ if I ever figure out how to insert a photo into these message I'll add Elvis and the Oscar Meyer Wiener Mobile. Both are good for a few laughs).

Oscar Meyer Weiner Mobile on I-75 in Atlanta.

Bon-  Oh thank you, thank you for the wieny mobile photo!  That just makes my day!  And YES you can come and scream in our home soundbooth anytime.  If this #$%&* winter doesn't end soon, you will fine me in there!  Oh, I just saw Elvis and the Gnome!  Atlanta is looking like my kind of town!  How is your insurance fiasco going?  Have you thought about calling an investigative reporter to shine some light on the problem?  Up here we have Arnold Diaz on the local news.  He has a show called "Shame on You".  He gets results very quickly when he sticks microphones in people's faces!

My pelvic/transvaginal ultrasound results came back normal.  So I guess I will just ignore this ongoing sort of ovulation pain.  Maybe it is just chemopause related.  As my Onc wants me on Arimidex and I am very reluctant due to new info on heart problems, osteoporosis etc...I am making an appointment with another Onc for a second opinion.  I am hoping they will be receptive to working with me using more lifestyle and alternative approaches.

I can tell you this.  I am sick to death of doctor's appointments.  This summer we are going to our Canadian island (no hospital, tiny clinic, one local doctor).  I look forward to a doctor-free summer!

Chey...Forget the oncologist. Call your breast surgeon (BS)  or rads onc (RO) if you had radiation. Both of them are better trained with lumps and bumps than some drug pushing medical oncologist. I swear if I could get to the people who set the appointments I'd rip their hearts out...you can be sure that not one of them has had a bc dx and had to undergo what you've been through. They just follow orders blindly...but not knowing what it's like to be on this side of the fence.

And if you need me to make that appointment for you...you know that DMom and I can be pitbulls when we need to be...I will do it. Send me a PM with the details and I'll call those suckers.

Chey, while you are in tears I am in rage. Do not let them bring you down. Suck it up for the weekend and then go elsewhere. My BS and RO are far better at bedside manner and more understanding than my MO ever thought of being. He makes money giving chemo. they have more hands-on with the patients. It irks me that I have to deal with my MO...he is the one who charged me fully for my Herceptin in January when my insurance was only paying 2/3 of that fee. I say skip that sucker and get the BS to see you as a follow up. No breast cancer surgeon worth their salt wants a woman loose out there crying over a lump.

Hang in, Chey. we will get your back. Always. We have been through too much together to let some snotty doctor's receptionist or horrible medical practice get you down.

Hugs, Bon

Chey--Do what Bon said--or see your family doc.  Take it easy over the weekend and make some phone calls on Monday.  It will be alright.  There are other caring docs out there.  We are all here for you--and if you need the pitbulls (Bon and Dmom!)  they will be on the phone giving someone some trouble!! 

Thanks for sharing the pics Bon!

Dmom--I just had that same ultrasound today.  One ovary has what looks like a cyst, doc said nothing to worry about, but we'll do the blood test anyway (ca-125? or something like that).  I started to freak out a little after the u/s, while waiting to talk to the doc, but just started praying!  I'll have another one in 6 weeks, just to make sure there is no change.  Stupid tests!

you  girls are so wonderful, thank you!!! its my BS who answered my 1-800-diagonse-me call, so i guess i need a new one of those as well, she is the one who said just go to my regular 3 month appt.....that they cant get me in!!!  i will try and stay calm, ill go to my own DR and see what she says, in the mean time i guess ill start looking for a whole new Med team to deal with my next 5 years... how wrong they are!!! so far its been 3 months and two weeks, do you think that matters? is there a reason for 3 months? it might be another couple weeks before i can get a 3 month check up,but i will have my lump cked out with my own Dr... I hate cancer!!! but i love you all!!!!

big hugs,

Chey

Hey Ladies !  1-800-diagnoseme, the weiner mobile, Elvis and the gnome, Percocet, and insuranceacation ( or something like that).  Despite all the cr@p you are all going through you can still laugh and make me laugh.  You are the best!!!!!!  Keep fighting.  I would be more than happy to be part of the phone call mafia.  Insurance, doctors, receptionists...  let me at em. 

I have changed my Onc because I was dissatisfied with my care.  I went from huge cancer center with a research focused doctor who is brilliant to my very dinky local hospital cancer clinic with an Onc who actually reads my chart the night before my appt..  I am much happier.

Physically I still have some post radiation and post mastectomy pain everyday.  I can often forget about it and it is fairly mild.  But, it is always there.  I caught my third cold.  It is very very mild.  But, my sinuses are very clogged and I am dizzy and tired.  I may have a little bit of an infection.   I can tell I have an infection because the dog steals my tissues out of the garbage.  I go for a physical in about 10 days so I am trying to hold on until then.  Like all of you I am sick of doctor appts !

Emotionally I have my good moments and bad moments.  Yesterday a co worker spent the entire lunch break literally screaming about her insurance bills and physical problems. There is no other place to go in my building to eat lunch so I listened and bit my tongue.  I had such a tremendous desire to tell her to lighten up it ain't cancer and then tell her about all the ladies on this board and all the terrible problems we have faced and conquered without ruining lunch for all our co workers.   When I got home I had a good cry and feel better now.  Since the weather is improving I think I will start going for walks during lunch break so I don't have to spend as much time with this woman.  Listening to her scream and curse and complain triggers too many emotions.

Gotta clean house and do some errands. After that I plan on taking a nap and hope to do some scrapbooking. My husband is ice boating today.  My daughter is at play practice at the high school and will then attend a sweet 16.  My son worked at a fund raiser for the museum he works for parttime last night.  I think it was the first time he was ever at a country club.  He was impressed.

Take Care ! 

Joan

Joan-  Gotta tell you, after what we've been through, nobody is going to ruin my lunch, especially if there is nowhere else to go!  I try not to be rude or blunt (though I fail miserably sometimes).  I have a friend who insists about ranting on about politics, Egypt, the Muslim Brotherhood.  Not that I am not concerned myself, but I just can't get my stress levels up about things I can't change anymore.  I have found the best strategy to be to butt in and switch topics like "I made the best easy chicken recipe last night and it only took 15 minutes, do you know what it was?"  If you end it with a question, they have to answer and often times you can redirect their rant.  I am not above doing it repeatedly...to the point that they think I am a bit nuts.  They usually do get the message though.

Chey-  Remember that our cancers may have taken 5 to 10 years to grow.  A few days or weeks will not make a difference.  Find yourself some new caring doctors for followups.  In the meantime go to your family doctor or gyno,  I wish we could set the Elvis, Gnome and WienyMobile on them!

Bon-  Jeez!  I don't even use the cancer card for myself.  To have someone else use MY cancer card for extra vacation time????  I hope you don't have to spend too much time together.  That's another thing about this BC.  I really don't have time for fair weather friends.  I would rather spend time with you guys.  

Wow - lots going on.  These stories would be funny if it weren't so sad.  Chey - You may want to consider gettng a new team in San Fran - They must have first-rate facilities there.  Post a request for names on this website.  Mimi and others - I have been doing lots of research on the mamm testing question.  Like many of you I have dense breasts and the mamm did not catch my BC.  I finally talked to the head of the breast imaging department this week and she couldn't have been nicer. She said that they would give me an MRI along with the mamm every 6 months - esp  since my BS likes MRIs.  The problem of course is that the MRIs give lots of false positives.  But as Dr Susan Love points out, you can decide whether you want every calcification biopsied or not.  The good news for me is that the FDA just approved a new type of 3-dimensional mammogram that two hospitals in Philly are starting to use, and my hospital is one of them.  This 3-D mamm is supposed to have NO COMPRESSION of the breasts, more accuracy and fewer false positives.  I hope I can get to use this soon. It sure made me feel better knowing that this is around the corner. Ladies - you are all BC Goddesses!