March 30, 2011 - Test and Scan Results.

Another early morning, up at 5 am and over to the MRI out-patient screening.  The MRI was easy, just the position seemed a little strange.  Good thing Elsie put the IV for the drip in the outside top vein of my right arm. Of course, their main concern is that no metal gets anywhere near the machine.  Hey, I’m concerned about that too.  Down to my underroos and a set of scrubs pants,  I had to climb up on the table knees first (always a challenge with my old knees).  Now Brandi  explains to put my chest into a frame (reminiscent of an utter frame for a milking cow, oh joy) and my face into position above with my arms stretched out like superman flying thru the sky.  Now the boobies are tender from the 9 core biopsies from yesterday and it is a major concern of mine not to be bumping ANYTHING against the sides or center of the “utter frame”.  Brandi further explains how I am supposed to remain perfectly still in this position for 45 minutes , and by the way, she will also be injecting some room temperature fluid in my arm during part of the process.  I figure I can do this, no problem.  It turns out that I have my mother to thank for all those pinches in church to be still, go figure.

While I am finishing up my test, Libby is moving us over to the Rotary House, the hotel owned by MDA but operated by Marriott.  Bless her heart; we have a ton of crap.  Lesson number 925, pack less.

 We get to Dr. Alvarez’s office at 3 pm and they call us in for the vitals and stick us in an exam room.  Dr. A comes in and tells us that all the reports look “berry good”.  In fact, he is smiling and explaining that my IBC looks pretty isolated to the left breast only, no wall cavity involvement and that just a couple of my lymph glands are showing any signs of the cancer.  He says that this is proof of early detection proceeds to walk us thru all of the tests on the screens of his computer.

 He goes further to explain that this makes me a perfect candidate for a clinical study that is in phase two for a combination of chemotherapy drugs that Charla will tell me about. My main concern is that this is not his study, when I ask why he is not considering me for his study, he says “you do not want to be a part of my study, those candidates are much sicker”.  OK, so now it is finally sinking in that the tests and scans really are giving me GOOD news.

Dr. Alvarez introduces me to Charla Parker.  She is dark headed, thin and an RN with a bold way of speech and a big heart. Hmmmm, Libby thinks "she's you in another skin" and "how many more of these will be meet in this place1". Charla explains the purpose of the study is test the combination of both panitumumab, nab-paclitexal, and carboplatin (PNC) and fluorouracil, epirubicin and cyclophosphamide (FEC) used before surgery for the treatment of IBC.  The goal of the study is slow down the growth of tumor cells by blocking the proteins on the surface of the can cell, kill tumor cells by binding a chemotherapy drug to albumin, a protein made by the liver, the albumin gets into the cancer cell and releases the paclitaxel directly to the tumor. Also to stop or slow cancer cells from growing by damaging the RNA or DNA that tells the tumor cells to grow. The FEC each work in different ways to stop the growth of tumor cells, either by killing the cells or by stopping them from dividing.   As complicate as all this sounds, it breaks down to a few simple facts:  1) I can get weekly attention from the top IBC team in the US (maybe the world),  2) I get a combination of FDA cancer approved drugs in a new combination delivered with the main goal of stopping the growth of IBC at its current location much like HER2 does for regular breast cancer patients, 3) further the drugs begin killing the cancer cells in preparation for surgical removal.  The very nature of IBC, makes it's removal difficult, and after all this explanation I feel sure that if the insurance is good to go, then so am I.
Picture of Leah and Charla:

This will mean that I travel to Houston for my chemotherapy over the next 6 months.  The first 12 weeks, on subsequent  Mondays, I will be in Houston taking the clinical trial drugs and seeing the team doctors. Then the remaining 3 months of my chemotherapy is at 3 week intervals also in Houston with the same team.  It’s going to make my work schedule crazy, but I believe I will have a better chance to beating this damn thing with the team that I have met and with the drugs they are going to use. 

March 29, 2011 - M D Anderson for testing

Holy cats in pajamas!  What a day....

We were up at 5 am, grabbed a quick bite and on the road to the Mays Clinic at MDA.  The day started out easy with a new mammogram on both sides and then we moved on to the sonogram set up.  Sonogram wasn't bad, but the focused biopsies were a real "ouch", that is my new favorite 4 letter word..  Those needles were long and no amount of deadening in the world worked after about the 6th one. Not jumping when that plunger thingie fired was quite an experience.  I lost count at 8 and just kept focusing on breathing, squeezing Juanita's hand and letting Dr. Yang to her thang! (sorry, couldn't resist.)  Juanita had to pry my hand away when we were done. ;-)  Haven't had my boobies squeezed like that in years.  It was interesting to watch for a minute on the monitor, but after that I squeezed my big old peepers shut and just hung on.  Four women worked me over!  Hey in the good old days it would have taken at leat five.  Thank goodness for extra strength tylenol, the only thing I am allowed until after the PET.  I did enjoy stealing Libby's "love" blanket away as a pity prize.  Won't be leaving my binkie behind anymore!

Ester, over in the main building's cardio unit, is ready for the echo cardiogram right on time. And that really was fun to watch. No, really.  It was very interesting and in color. It is amazing to watch how God has put us all together, seeing your own live heart beat, watch all the valves and chambers work makes you feel a little humble.  Hopefully, what the Dr.s will see in the 80 some-odd pics we took, is a strong heart that will ensure that I can withstand the chemo strength they need to give me.  And when we get the results tomorrow, that Dr. Alvarez will be pleased.

We left the clinic about 1:30pm and returned to my faithful Marriott for a well deserved nap from 2 to 3:30.  Thank God Libby woke up, cause I had set my alarm on my phone for AM instead of PM.  But we made it successfully to the nuclear diagnostic center (Mays Clinic again) for the PET scan.  Interesting thing, they inject radioactive sugar into the blood.  You sit still for an hour and 20 minutes and then they stick you in the imaging system.  Which is in the coldest dang room you can imagine.  I brought my on binkie this time and I could feel Kelsey in every knot that we tied.  I came out at 6:30pm to find Libby as the only person left in the waiting area... Poor baby, what a boring day for her.  She has had to tote everything since the biopsies, we are learning to limit our stuff.

Libby is an absolute jewel.  I don't know what I would do without her.  Just having someone by your side is a life saver.  Nita and Sheila both sent me love notes throughout the day with Kelsey and Andy both chiming in to.  Trust me, I feel the love and it is very uplifting.  Keep all the prayers coming, I CAN FEEL THEM WORKING.

Ned, I used your "flower power" shawl to tie the ice packs on!  It works like a charm. ;-)  Now it's time for some good drugs and sleep, so we can do it all again tomorrow!  xxoo Leah

March 22, 2011 at M D Anderson

Kelsey, the little shit, has given us all fits but is with us in Houston.  Ok, so I am better with her and Libby than I am without her, but I just don't know where she gets all that hard headness from. LOL

Anyway, we are up at 5 am to make my 7 am appointment to get registered at M. D. Anderson (MDA) from here on out.  We all load up on the Shuttle at 6 am from the Residence Inn to MDA.  We have just passed a good night on the noisiest beds you have EVER seen. ;-)  I will out forms with Milla, meet Rebecca, my scheduler and patient specialist.  Before you get to meet your Dr. at MDA, you meet the nurse that takes your vitals and then get to meet  NP - PAM.  She is my kinda girl.  Straight forward, no holds. She will be my main contact and meeting with me more than anyone else and that is all okie dokie with me.  Of course, Kelsey and Libby are everywhere with me and even recording some of our meetings.

While I am waiting for Dr. Alvarez, David a researcher comes in and asks to talk to me and ask my permission to get extra blood work for some research he is doing.  I say YES, before he can explain what the research is for, and he calls "so bold, you have thrown me off my regular speech."  Poor guy, he hasn't got a clue how bold I can be, but he will learn.  So I sign the paperwork for the blood research he is doing to do early diagnosis of cancer and out he goes.

Finally, I get to meet the the man, Dr. Alvarez.. Cute, Cute, Cute!  And really nice and the accent doesn't hurt either.  He does a great job telling me about their clinic, program and what to expect in the coming days, weeks, months and years of my illness.  Generally, 6 mos chemo, breast and lymph gland removal, reconstruction and maybe more chemo.

Now, when we are thru with all the questions all three of us can think of, and pumped by the wonderful amounts of energy that have come our way, I get to meet Juanita.  Another researcher, she asks for some of my biopsy tissue for specific IBC research and once again there are the signing of papers.

While Rebecca is fighting with the Insurance from hell, Atena, we are sent down to Diagnostics where I meet Jeff, Mr. Dracula, who commences to lay out 20 tubes for all the blood samples and tests that MDA needs.  Pictures coming.  I did pretty good with all the icky stuff until about tube 16 or so and then get a little light headed. ;-) Jeff is great and explains to me that drinking water and maybe eating something would be a good idea.  Funny guy our Mr. Dracula.

All this time, Kelsey, Libby and I have been taking turns carrying around my films from all the previous 5 years of mammo and sonograms.  Back up to Rebecca we go, and she hasn't been very successful on getting me in the next day or so for testing.  But he has been able to get ALL the test scheduled for Next Tuesday the 29th of March.  My next appointment with Dr. A is on Wednesday the 30th, so what the heck.  We will do all that he needs the day before my appointment.  We get to make plans to go home and take a much needed nap on the nosiest beds in the world. ;-)

Libby gets to go to dinner with her nephew and Kelsey and I go to a great little italian place for dinner.  We hit the hay (sure makes more noise that hay) and get off home the next morning.

Jeff, Mr. Dracula, actually a really Nice blood sucker! Ha.

March 20, 2011 Telling Kelsey & Andy about my IBC

The morning after Kelsey's shower is tough.  Kelsey and I go do our breakfast thing and then come back to her house, where I have spent a lovely evening with Kelsey making me a binkie...

I have already discussed with Dr. Seger that I want his help "talking to the kids" about IBC and explaining to them what is about to unfold.

We get everyone gathered around the table and talk.  It is a tough experience telling the most important person in your life, who is carrying the 2nd most important person (5 weeks away from delivery) that you have breast cancer.  It was the toughest decision to tell the kids, but all the smart people tell me we gotta do it, so on we go.

Kelsey and Andy are shell shocked.  I imagine the look on their faces is very similar to the one I have been wearing now for several days, at least when no one is looking.

Thank God for Dr. Seger, he has all the real important information and communicates it to the kiddos with the great bedside manner and confidence that I am sure made him the Mr. check, double check, confirm and reconfirm that we all love!

It is a hard morning, but we make it through.  We even make time for Baby Bump Pictures.  Yippee!  No, I won't be publishing them, they are just for the kiddos.

I also move on to Lamesa, where I have to visit with my Mother and explain that I might be on the road for 10-14 days at MD Anderson.  By the time I get home Sunday night, I am exhausted.

The IBC Discovery Story

So many of you have asked, What is IBC?  How did you discover you had it?  What are you doing about your IBC?

It is so great to have so many friends and family that care, but is it exhausting telling the "tale" so many times.  And it is depressing as hell.  LOL  Besides, I can't tell the short version, so here is the long version.

So here is how it all came about:  Around March 1st, 2011, I noticed about a 1/2 inch diameter spot on the upper part of my left breast.  Now, those of you that know me, I am a little bit well endowed and we can all be grateful that the spot was on the top of my breast (if it had been on the bottom, I might never have noticed it).  Anyway, I really just thought "well, you idiot, what have you run into now" to make your boobie red.  Going on my merry way a few days later, I noticed that my dear old Scottish-Irish skin was still red and that the spot seemed to have grown.  So I am now paying a little more attention thinking that during my process of life that I have somehow gotten bitten by a bug or spider or some such thing.  Two days later, I came home to discover the area is larger, hot and seems to have a texture underneath that is somewhat firm.

OK, so now I start to get worried, Libby calls her Dr. at Scott and White and she recommends that I talk to a DR. at MWC that has studied with her.  I call the next morning and get into the Midland Women's Clinic.  They were awesome, every doctor is booked for weeks, but they make me an immediate appointment to see one the the PAs, James Struble.  I walk in and meet James and Kenda (the best nurse in the world).  They are awesome and we begin our exam.  James asks that Dr. Locke come in to take a look.  To make the story a little shorter, they immediately schedule me for a new mammogram, sonogram and to have Dr. Durgin at Midland Surgical Associates have a look and do a biopsy.  James even goes so far to get on the phone himself to get me the "earliest appointment possible" for the mammo and sonogram.

By now, Libby is worried too.  We are starting to sweat that we will not know anything before the baby shower.  Kelsey and just about everyone else is in the dark.  The mammogram was a really painful bitch, I was in the process that day of having all new carpet laid in the house and forgot to take James advice about taking a pain pill before going, sonogram is also done same place and same day.  I go on March 11th to Midland Surgical Associates where I have an appoint with Dr. Durgin.  I do make him  understand, "that as long as you do not hurt me, then I will not have to hurt you" he says "my wife is a hitter too so I get it!"  Anyway we get the punch biopsy done on that Friday (by we, Libby is with me) and now we are waiting for pathology.  He says not to get too excited because the only cancer that manifests itself like this is rare, inflammatory breast cancer IBC, and it shouldn't really be a concern.  So, several days go by, no word and I am already antsy.  I call Midland Surgical Associates on Thursday March 17th, St. Patrick's day, leave a message that I want my pathology results.  A nurse calls me back about 1:30 pm, while I am eating green curry - in honor of St. Patrick's day, and just tells me I have malignant cancer cells in my breast.  Suddenly, my food does not taste so good anymore and I finish up and go directly to the MSA where I get a copy of my pathology report.  Wow, right there in plain old black and white it says, INFLAMMATORY BREAST CARCINOMA, and now I can't breath, think or see straight.  I call Libby, yes- it is the rare cancer the Dr. Durgin mentioned and we meet at my house.

Now we have already made plans to meet with my other fast friend, Carolyn Moreno, to work on the christening gown project for little grand baby Evie.  So we decide that it is finally time to try out the ginger liqueur I have been hording and we create the "LearJet Cocktail".  3/4 shot of Ginger Liqueur, 1 shot of vodka and 2 shots of peach nectar shaken in a cocktail mixer with ice, makes 2 short cocktails and they are smooth....  We order Outback and commence to have a girl's night like we have not done in awhile. (at one time I have  Libby, Carolyn, Ruby and me all piled on my bed trying out the new electric controls holding cocktail glasses. Dang it, why didn't I get a camera).  Anyway, it was very therapeutic.

Now comes Friday, March 18th.  As soon as it is decent, 8am, I call Mr. check, double check, confirm and reconfirm (Andy's dad, Dr. Seger).  I explain to Dr. Seger what is going on and that Libby had been on the phone late yesterday and has me an appointment at Scott and White in Temple on Monday.  I ask, "where would you take Christine in the same circumstances?" and he immediately answers M.D. Anderson in Houston. So we talk a little while and I explain that MSA called at 6pm the previous evening and a nurse has asked that I come in at noon today, Friday, to see Dr. Sawyer.  Dr. Seger says go do that and get back with him.  Now, I am nothing if not thorough, and I begin to poll others that I know have dealt directly with cancer.  I get the same answer everywhere, M.D. Anderson.  We are about 10 minutes away from my noon appt. and I call Dr. Seger back.  He has already done his research.  I tell him that I am seriously thinking that I should go to Houston, and he says "good, I have been on the phone with them, they have a clinic that does nothing but IBC and I highly recommend that this is where you should go, no doubts."  Now for those of you that do not know Mr. check, double check, confirm and reconfirm, those are mighty big words and I take them as the gospel.  Especially since we can tell from the pathology report that MSA had the results since Monday the 14th and did NOTHING. Now being pissed is a good thing, anger can carry me through the day.

I now walk into my appointment at Midland Surgical Associates to see Dr. Sawyer, with much more information and ready to ask questions.   I wish for Dr. Durgin, but he is on vacation and will not be back until next week.  Dr. Sawyer is an egotistical asshole and the whole nursing staff is a bunch of snobby bitches!  Dr. Sawyer even has the gall when I ask "Is a phone call the way your staff usually tells someone they have cancer?" to which he answers  "sure, sometimes".  He commences to give me an exam and assure me that "we have everything here in Midland to treat this type of cancer".  Now, you will all be proud that the man is not dead, in fact, I simply say, "I will be going to M. D. Anderson" and walk out.

Libby is with me and we leave and drive directly to Midland Women's clinic where Kenda (still the best nurse in the world) goes and gets Dr. Locke and even though it is nearing 4pm on Friday they get to work getting me referred to M. D. Anderson.

God Bless Midland Women's clinic, Dr. Locke, Kenda and James Stuble.  They may be instrumental in saving my life.

M.D. Anderson calls me on Monday, Kenda has already been doing her "thing".  We now have an appointment for 7am  Wednesday 3/22/11 less than three weeks after me "seeing a red spot".

The Baby Shower

2011_03_18

Kelsey's baby shower was so much fun.  We had 40 friends and family attend the 11am to 2pm event and we all had a blast creating either Moon or Star quilt blocks for our new "star to be" Mary Evangeline Seger.  Evie, for short, should arrive on or about April 29th and I am going to be the bestest grandma on the planet.  This is my first, so I get to be slightly goofy...

Here are some examples of the quilt blocks, cool huh....

Kelsey is feeling just awesome and she and Andy have both been working hard to get their offices and home prepared.  I just know that they will be inspiring parents and will shower Evie with so much love.  All the grandparents, great-grandparents, uncles, aunts, cousins, etc. will surround Evie with love and no small amount of alpha A type personalities.  She will be one self-assured little chick!