Chemo Port Installed Thismorning

It was an interesting experience in part because a former classmate of mine from high school was my pre and post surgical nurse.

Got wheeled to my room and got checked in and it only took 3 tries to get an IV in me (for me that’s really good).  Then Dr Ganju came in, looked at my chest, and told me he would see me up in the operating room.

They took me in a wheel chair to the operating room and they had me lie on a operating table built for Twiggy.  They have me get situated and the Dr comes in and puts blue towels around my face (to keep me from looking and freaking out I presume) and then they kind of strapped me in.

He orders the nurse to give me medicine in my IV which I was told will put me to sleep and give me amnesia for the operation (neither one happened by the way) and I remember a few poking sensations in my upper right chest and a bit of pain and pressure when he pushed the chemo port into the artery but nothing excruciating. Then he sewed me up and I think I felt maybe one of the 4 to 6 stitches and I was done.

They wheeled me back into my room in the wheelchair and then fed both me and Skye. Then, 2 hours after I got arrived I was on my way out with my new chemo port.

Oh and the other Breast Care Coordinator met me at the hospital and brought me a pink carnation and offered to answer my questions. Problem is that everyone is kind of questioning or explaining things all at once so the cooridnator (Named Judy) ended up talking to Skye.

At least I can take care of my “kids”…I also guess they will be giving me the “red devil” chemo and the Taxotere chemo at the same time.  Plus she said they will give me side effect drugs for both…yikes….will double the chemo meds = double the side effects???? 

Oh, and yesterday my friend Karen gave me a baseball cap she bought when we went to Yellowstone back in 1996 so thats officially now my “lucky cap”.

P.S.  It’s now early Wednesday morning and I am still up…..I have to admit this chemoport thing hurts and is just generally very uncomforitable. It feels the same way an IV needle feels only its in the chest. I at this point cannot fanthom why some of the women on the breastcancer org site want to keep these things long after the chemo treatments are over. I hope this thing becomes more tolerable soon.  

Echocardiogram & Breast Care Coordinator

Today was my first echocardiogram and its used to determine if my heart can take the drug Adriamycin, typically used as a chemotherapy drug for breast cancer.  Someone will read these results and my Oncologist should have the results before next Wednesday. 

The test is completely noninvasive which means you dont get stuck or poked with anything. Warm gel is put on a hand held conductor and the technician presses it to your chest.  Echo’s bounce off your heart to measure how well its working.  Mine sounded like a wash machine on the wash cycle.  She asks you to take a breath and hold it for a few seconds several times during the test and the only time it got a bit uncomforitable is when she was pressing that conductor on my ribs.  I laid on my left side for most of the test and then on my back for the rest of it.

Then I met my “breast care coordinator” today. Her name is Carol and her office is in the Mammography section of the Sheboygan Clinic.  She gave me a 3 ring binder with general info and the info sheets on two medications…the Adriamycin and something called Taxoterre but I dont know if these are given together or if there are 4 cycles of each drug or what at this point.  I suppose they dont tell you a lot so you don’t freak out and drive to Yellowstone instead of going to a treatment.  Dang, that does sound tempting though.

If you are curious to see the video version of this blog take a look at part one  http://s270.photobucket.com/albums/jj113/lostsoulsorg/?action=view&current=BreastCancer1_0001.flv

Moving Forward

Tomorrow I get an echocardiagram. Then next week Monday I get the chemoport installed on the right side of my chest. The very next day they start my chemo treatment.  I was hoping to let things go till after the 3rd to get the months shopping done, etc without having to worry about catching something from someone but I’ll never be “ready” for this so.

I guess I cant have a flu shot till the whole mess is over but I wonder about those around me. Well I typically jump and practically run away from people who cough or look sick now because of my COPD so at least thats one thing that I know wont change.

I worry though what will. I feel fine right now and it seems totally illogical to give someone something to cure them that makes them feel sick.  I understand the details: kill cancer cells means killing other rapidly dividing cells, etc but … DANG!  

I’m trying to get all the stuff done I need to be coordinated and have energy for and so far I have accomplished my goal.  Just a few more chores yet this weekend and I’ll be done with the major projects.  Wont need to worry about that stuff then again until spring. 

I want to finish my degree. I’m now only 8 classes away from a BA in social work and its stupid NOT to finish it.

I’m also glad the new shows are starting…I am an avid fan of the show Cold Case and am thrilled that its going to be back for another year.  The show is cool and the time period music is excellent. I often think that being the person in charge of picking each episode’s music would be my dream job (except fighting with whoever for rights to use the song I suppose).

Heres a couple coincidences:

1. I am having my chemoport installed in the same hospital my best friend died at in 1988 (thats just really a freaky feeling and I hope that it’s not a really bad omen). 

2. My Oncologist plays classical guitar and so do I.

Well I will post more often now.  Silly maybe to be doing this since there are a ton of other blogs from breast and other cancer patients online but I just need a way to get stuff off my chest (hmm, no pun intended) and I guess this blog is it.

First Oncology Appointment

After meeting Dr Haid today I am now 100% positive that switching to Aurora was the BEST thing I could do.  I like him…he’s smart, has a great bedside manner, and actually cares about his patients. If you’re a reader who lives in or near Sheboygan he’s your man with Dr Ganju as surgeon.

The first relief is that it’s not Inflammatory Breast Cancer which means I need to alter the name of this blog.  I have Invasive Ductal Carcinoma and it comprises about 52% of all breast cancers.  My cancer is both estrogen and progesterone positive which is a good thing I guess and my HER score is still unknown.  I am stage IIa which means it might be also in the lymph nodes in that armpit but the pet scan shows no other cancer.  It did however show benign cysts on my adrenal glands (on top of my kidneys I guess).

Other health problems are: gastro reflux, a cataract in each eye, a lung diffusion disorder (C.O.P.D.), sinusitus, and type 2 diabetes controlled with oral medication.

He says I will be “busy” for 3 or 4 months.  I will get 4 rounds of chemo and then surgery and possibly other treatment afterwards.  Maybe just a lumpectomy…..but if one has to go completely I am going to beg him to take both.

Within the next two weeks I will go through an echocardigram to determine if a certain kind of chemo drug can be used and then have a chemo port installed via day surgery (he swears I will get “Twilight” and a local) then when that heals chemo will begin. He says I am “fixable”. Fixable is good!

Back in the late 80’s or early 90’s someone called me and asked if I ever had to face my own mortality…then the answer was no….now the answer is yes.

Oh well, more as the process continues.

The Beginning

On August, 21st, 2008 I went to see a the Physicians Assistant on call at the Marsho Clinic in Sheboygan, WI and she told me she felt “something” in my left breast so she scheduled me for a Mammogram and Ultrasound for exactly one week later.

I was nervous that whole week and so I: stained my deck, mowed my lawn, cleaned house from stem to stearn, and washed everything that could be laundered.  A fairly amazing feat for someone with a lung diffusion disorder.

After my Mammogram the Radiologist told me he saw a problem and that he was “very concerned”.  After the Ultrasound he told me he was “95% sure I had breast cancer” and then he walked away.  I couldnt get in to see anyone again until Sept. 18th. Needless to say I became a wreck.

I had a knawing feeling that waiting for nearly a month was NOT a good idea.  People told me that I would be in the “fight for my life” and I felt my Medical Team wasn’t going to even let me out of the starters gate. 

After going to http://www.breastcancer.org and after chatting with a few women there I decided to pick up my films and reports and switch to the Aurora Sheboygan Clinic where I had my initial appointment with a very sweet Nurse Practioner named Amy on Sept 5th.

It was she who got me in to see what she termed was the most “awesome” surgeon named Dr. Ganju on Sept. 8th. He looked at my mammo and ultrasound films and was also concerned. I had my biopsy the 9th and results on the 10th.  My PET scan was done on the 11th.  

All those vital steps were completed one week prior to what would have been if I had stayed with Marsho Clinic.

My diagnosis was Inflammatory Breast Cancer….lucky me, its the rare and aggressive breast cancer.

What amazed me is that my symptoms werent like the symptoms of others I had read online. Mine never turned red, never looked bruised, and never itched. The “orange peel skin” was confined to the bottom of the breast and I didnt really notice it.  All I knew is that my left breast felt HUGE and that the nipple wasn’t erect like the right one.  Just before my Mammogram I also noticed that the area around the left nipple appeared lighter in color but still looked nothing like the photos you usually see of Inflammatory Breast Cancer online.

One thing I did was ask for some Xanax and Ambien.  I must admit that has helped me cope with the tests so far. If anyone reading this has just been diagnosed go beg your doctor for these pills because the 6 to 8 hours you get “off” from worrying about yourself by finally getting some rest is well worth it.

I initially thought the mammogram would send me through the roof when the clamped down on that left breast but it didnt. The Ultrasound was painless. The Biopsy, that wasn’t as bad as I thought it was going to be either.

I’m needle phobic so I’ve learned not to look. For the biopsy he just had me lay down, he gave me a numbing shot right over the tumor site, then took something that reminded me of a small glue gun and I heard 5 clicks and felt just a bit of pressure.  Then they put on a dressing and told me to go home and take it easy.  PLEASE DO THAT.

Dont expect to go shopping, etc. after a biopsy……you’ll pay for it in spades from what I hear from one person a step ahead of me in the process.  That numbing stuff wears off in about an hour so go home and just take it easy.

The PET scan was interesting. Those results arent in yet and I am paranoid about those I must admit. But I wanted to explain the PET scan procedure…

They’ll ask a whole bunch of questions…..arthritis? diabetes?  when you ate?   They ask about open wounds (dont forget your biopsy site) and will ask you not to eat anything for 4 hours before the exam and to drink at least 2 liters of water starting two hours before the exam.

Then they take you to nuclear medicine and put in an IV line.  If, like me, you are a “hard stick” tell them in advance so they use the thin needle butterfly IV.

They inject you with 2 syringes full of a clear liquid that feels cold going in and then take out the IV thing.

You essentially lie quietly in a recliner type chair for 45 mins to an hour while this solution circulates through your body.  Then they take you to the bathroom before the actual scan so you dont pee while in their “multimillion dollar machine”. 

The scanner I was in wasnt bad and, at 5′4″, it took me only 15 mins for the actual scan. From what I was told it first scans your bones and then it scans your internal organs. The bed you are lying on moves first to the back of the scanner and then slowly back to the front.  I guess results come to your doctor in one or two business days. The whole point of the initital PET scan is to see if the cancer has spread and if so, to where.  The more of your body that “lights up” the worse off you are. 

I have learned one thing so far and that’s the fact that you have to constantly advocate for yourself.  If you have other health problems, are a IV “hard stick” like I am, or have any concerns you have to voice them and voice them to everyone you deal with….sometimes more than once. They can’t read your mind and dont have the time or inclination to try.

Also, they tend to treat people somewhat better who aren’t there alone so I’ve learned to take some poor sucker with me to my appointments. Besides, it helps to have someone else do the driving when you have tests or procedures done or go in to get test results.  Its hard to drive when you are scared shitless!

And don’t ever settle for poor treatment or apathy.  You have enough to deal with.  For more information on me see http://patrice634.wordpress.com/about/

More on my journey when I know more…I hope it’s going to be a long but not too hellish one.