June 28 Patty's Temporarily Tittled Blog?

Whadda ya tink? ; )

June 28 Vacation over

That stinking stopover in Scottsdale completed our round trip to Pagosa Springs through Santa Fe to see my cousin Martyne and her family (Hi John, and my three buddies Evan, Aaron and Sean) We had a great time playing games with the boys - Evan is a Smith game player for sure. Thanks again for the bed Evan!
We got to the was-Fairfield-now-is-Wyndam resort just after Bob's folks George and Mari had checked us in, and then got unpacked into the units. Soon after that Bob's brother John and wife Val and daughter Elizabeth arrived.
We went out to eat at a great place in the town - I can't even remember the name of the place, but I loved my Veggie pizza with feta cheese and some kind of oil made by the locals, (made with olive oil, lime, onion, garlic, and allspice!) and my order of 'Chipotle Sweet Potato Fries'. Bob loved them also, and we will be trying to duplicate them at home - without all the oil, of course, so they will be sweet potato 'bakes', then, won't they. Weight Watchers will be happier with me, though, for that concession.
We left the next morning at o'dark thirty for the van trip to Durango to board the train to Silverton, then ate quickly and caught the same van back to the resort and it was a beautiful but very, very long ride and very tiring on the buttocks. Lots of cinders on the clothes and only one in my eye. The girls really liked the free refills of the souvenir cup they purchased, and all of us were really glad to be home again.
I got another round of the two little California girls spending the night with Aunt Patty, (the first night we went 'swimming' in the garden tub in the bathroom) and the second night they stayed up way way too late and poor Cassidy was sick. She said very grammatically correctly " I don't feel so well." We had quite a time trying to figure out what would help her tummy get better. Saltines? Tea? Apricot dipped in hot water? (Her idea) Did Uncle Bob have anything? I looked for Tums or something - no luck. Did we have juice? Did we have milk? I finally found cottage cheese in Great Grandmother's refrigerator and was trying to see if that would work if I squished it and heated it with water to make hot milk? (I was desperate.) I suddenly remembered -- I did have milk! I had a box of powdered dry milk. Yum. We made it, heated it and then I flavored it with the tiniest of chocolate flavor and she drank it in 30 seconds (she wanted me to time her) and then she was just fine - went in and re brushed her teeth, and crawled into bed. Before I finished brushing my teeth, she was sound asleep. Only about an hour or hour and a half later that she was supposed to be - but please don't tell her Nana. You didn't read that here, Mary - she did get a good night of rest and sleep.
Bob and I got up early to get packed to leave, but that didn't happen early, (you all knew that didn't you). We did however drive from Pagosa Springs on south of Flagstaff and stayed in Camp Verde,so we got a big head start on the drive for the next day. After our free continental breakfast at the hotel, we were up for the drive on into Scottsdale. You all know that story.
What a whirlwind 'vacation'! Not. I went to work the next three days, and now I want to sit down for awhile.
Thanks for all the support and good thoughts and wishes for the biopsy-that-never-happened.
A friend told me it was all of you wishing me well that made what ever those spots were, disappear. Thanks to all of you! Love, Patty

June 28 No Biopsy!!!

The SMIL (Scottsdale Medical Imaging, Ltd.) folks couldn't find the spots that they saw 5 (five!) weeks ago, so they couldn't do a biopsy on something they couldn't find. They couldn't figure out why I was crying and not just happy. I was crying because I was so very frustrated that we have wasted so much time waiting for this stinking appointment, and it was all for nothing.
These were new people, at a different location, and didn't realize there was already a biopsy confirmed cancer in the other breast. They thought that I should realize that this was a good thing. And so it was, really, and I am a little more aware of that this morning, but right then I was still so frustrated and mad because they couldn't even tell us the exit number of the street they told us to take, because "I don't know, I don't drive on that road." I was freaking out that we would be late, but, we did make it with about 3 minutes to spare, after turning around, going back about 4 miles (we were almost to the right road) and then stopping at a book store that isn't Barnes and Noble but begins with a B (I just can't think of the name this instant). Those folks were very nice and we looked at their maps and found the street, finally, and someone in the store actually knew that it was just a few more miles south. So...off we went again.
SMIL has so many people coming to several different clinics, from so many different places in the state, I personally think it is unconscionable that they don't have a written dialog of directions including exit numbers from the freeways for the streets that they tell you to take, so when someone on the phone asks, the directions can be easily accessed and read off the the patient. Someone coming to an MRI clinic is obviously not coming for the kicks and fun of it, so the least they could do is to try to make their journey a little easier. Please. OK, I'm stepping down. For now. So we came on home.

And I just decided that I'm going to send a copy of this to the SMIL folks, even though I wrote most of it on the form you fill out after your appointment. So there. I also told them that for a price, I would be happy to write clear and concise directions that anyone could follow. (Yes I can! I'll just need to edit and edit!) : ) Happy Days! Patty

June 20 One Week to Go!

The countdown continues! Yey!
Bob and I will be in Scottsdale one week from today - in the SMIL (Scottsdale Medical Imaging, Ltd.) office waiting room. They called me the other day to get information (Height, weight, claustrophobic, can be on stomach for hours?) and I finally got to ask someone what exactly does the MRI biopsy entail? Sounds like basically it will be a core needle biopsy but they keep pulling you out of the machine to see if the needle is in the right place. Must be a plastic needle (forgot to ask that). At any rate it takes a long while, as you get put in, find the spot, pull out, place the needle, put in, see if the needle is in the correct place, pull out, take the specimen, then do it all over again -- I didn't ask - twice on the same spot, or not. Certainly again for the second spot. In, out, in, out. It is a VERY good thing that I am lying face down and can't see anything but my hands and the floor basically. They had to put earplugs in my ears under the sound deadening headphones with the soothing piano music I chose to listen to, so I could hear the piano music. It is very loud in there.
The new news is that all things being equal, and nothing new and/or unforseen is found in this biopsy, we have a tentative surgery date for a lumpectomy on July 10. This is the first date the Dr. has after coming back off vacation. The office nurse, Mary, has been awesome in answering questions for me. When I get information, I need to then think it over for a while, and then I always seem to come up with a new batch of questions.
That office is so wonderful, I am so lucky that I was able to get in to see my favorite surgeon again. I feel lucky in so many ways, and to get the surgeon who first operated on my left breast (wasn't that a movie?) (Oh yeah, it was 'My Left Foot') to do this surgery just seems a great omen of good things to come.
Thanks Dr. Roeder, Mary, Brenda, Germa, and probably some others I've let my pea-brain-off-HRT forget. I love you all. You are all so awesome, helpful, kind, understanding, thoughtful, insightful, and all around nice. I totally totally appreciate you all. Love, Patty

June 20 Long Time No Talk

Here it is - almost a week later - so much to do and so little time in which to do it. I began last week discovering we needed to purchase a last minute ticket to San Diego for Sara, and finally got that settled and her on a plane on Friday morning at 6:45a.m. or so. She is helping her California Aunt Mary with the grand daughters Cassidy and Aubrey so Aunt Mary can finish packing up and moving out of the house where the girls and their mom, Jenny, have been living. Jenny got a huge promotion across the world in NEW JERSEY and Nana talked her into allowing the girls to finish school in California and live in their familiar surroundings while Jenny got settled in her work. So Nana has has her hands full. As my sister Sally said this morning, "It's different [changing a diaper on the floor] at 62 than it was at 22!" Well, yeah! Nana is worn out and it sounds as though Sara is having a good time with the girls and they are doing well with her.
They will be heading to the LeCompte family reunion in Pagosa Springs, Colorado later this week.
Bob and I will be leaving bright and early Friday morning and driving to Santa Fe to visit with Martyne and John and the boys overnight and part of Saturday, then on to the festivities at Pagosa Springs. We don't have any set things to do that I know of while Bob and I are there, except taking the narrow gauge railroad from Durango to Silverton and riding the bus back. There will be 12 of us, I think. I think a bunch of them are going white water rafting on Wed the 27th, but Bob and I will be in Scottsdale, Arizona by then and I'll be FINALLY having my long awaited MRI guided biopsy.

June 14 James Brown Get Well Soon

I have the best clients. Yesterday three friends from Girls Chorus (Mom and two daughters (Hi C and A and S!) came in for hair cuts and gave me the best card in the world. It is a get well card and reads on the outside (with a band aid and a cup of tea and 'not-smiley' face) "I don't want to hear, 'I'm feeling so-so' or 'okay' or 'not so bad"...then you then open it and it reads "That's what I want to hear" as it plays/sings James Brown "I Got You (I Feel Good)" : "WOWW, I feel good. du du du du du du du. I knew that I would now. du du du du du du du. I feel good. du du du du du du du. I knew that I would now. du du du du du du du. So good. du du. So good. du du. I got you. WOWW."
Can't you just hear it --- I played it and played it for everyone in the salon and then for every client that came in after that (they were the first clients of the day) and then I took it home last night and played it over the phone for people and now I think I'm going to punch a hole in it and tie it around my neck with a string because I LOVE IT SO MUCH and it makes me smile. Every. time. I. hear. it. So Good. So Good. Thanks again you three P girls. Love you. I have the best friends and family who love me and help me. Thank you ALL. Patty

June 14 No Bruise from Amy!

I just called the lab at the Cancer Center to tell the 'newbie phlebotomist' that she indeed did not even leave a bruise, she wasn't there , but I found out her name - Amy - and that yes --- It WAS her first draw!!! Yea her and yea me for being allowed to be one of her first experiences. I hope she is as excited as I am. I don't know why I am excited, but I'm very happy for her and I'm glad it was me with my great big vein to hopefully have made it easier for her. OK - you may now officially call me weird.
I called Jessica the Genetic Counselor after the blood draw, to ask how soon could the results be back if we expedited them. I thought I remembered that she had mentioned an extra $50 fee to have that done. I wondered if the results could be back for the next doctors appointment the end of the month, so we could have them right after the biopsy.
Jessica the Gene girl called and said - "No Patty, it is not $50 more for expedited service on the gene testing - it is 50%. Of the $3000+." Oops. Never mind.
See why you need an extra set of ears. They appreciate it too. So you don't call 2 or 4 or 7 more times after to ask another question and another question. Oh my. I will get past this. Soon.

June 12 BRACA1 and BRACA2

Well - I got a call this morning that the insurance will cover 60% of the cost of the blood test, after I pay the deductible of $1000. That brings it to $1800 and something. I rushed over and they drew the blood and it will be sent off in the morning - I think I remember that there is only one place in the country that does this testing. They will only do 60% because it is "out of network".
I just made a newbie phlebotomist smile this afternoon. I saw the eye contact and the eyebrow lift and the head come'ere nod from the gloving up woman, and looked over to the other woman who was just sitting there, looking kind of nervous. I said - "Do you want to do this stick?" She shrugged. I said "Are you new at this?" A nod yes. "I have a good vein and I'm nice and I was a practice vein for a friend when she was practicing her blood draws." She brightened and got up and came over, and when the other one got out the butterfly blood-letter-outer thingy I was relieved, because I realized that I didn't know if this was her first ever draw or what!! The butterfly thingy has a much smaller needle and doesn't/didn't hurt as much going in. She did great! And I told her so. And she smiled. She didn't hurt me and it was over quickly and I don't think there will be even the littlest bruise. Yea her. Yea butterfly thingys (what are those thingys called?)
Jessica Ray the Genetic Counselor, will send off the precious stuff to Salt Lake City tomorrow morning, then we will have to wait 3 to 4 weeks -- why oh why is that - do they have to grow this stuff as they do when you get an amniocentesis?

June 11 Genetic Counseling

Well - I've been to the Genetic
Counselor, and told her everything
I can think of, and all the facts you all
have helped me gather about our
family's medical history. I will have to
wait a couple of weeks to find out if
the insurance will pay for at least some
of the cost of the testing (approxi-
mately $3120 at UMC), and then after
the blood is drawn, it takes another 3
to 4 weeks to get the results.
What I meant by this being my gift to
the rest of my family - if there does
happen to be a gene and someone else
wants to test for it, it will cost a great
deal less, because the lab will have
done all the initial testing on me, and
so now they would know which gene
marker to test for, instead of looking at
all of them. The cost would then be
about a tenth of the original, it sounds,
so if you want to know, or to later test
- just ask. If you don't ask me, I won't
tell you.
Now - here is what I did find out:
One of the two genes they are looking
to see if I have - could pre-dispose an
individual to breast cancer, colon cancer,
ovarian cancer, prostate cancer,
pancreatic cancer and melanoma. So
whatever you decide you want to know
or to not know - please be a good
do-bee and do your proper and timely
and thorough checking and testing - as
often as they say to do so. Your health
is what is what is most important.
Men - You Too!! That means all of you
men - get your annual PSA test done.
Everyone - check all your moles and
spots. Do your breast self exams. Yes -
you men, too. I trust the women all
know what to do - it is just that the
men don't usually read up on all this
stuff like we ladies do, or does that
sound too sexist? Men really just
usually do not read the stuff in the
magazines like we women do. I don't
mean to step on toes, but on this one
- I'll bet I speak the truth here.

June 5 Highs and Lows

Tuesday June 5, 2007
It has been an up and down weekend and Monday/Tuesday. I called Dr. Roeder's office Monday morning to see if they knew anything about when my MRI appointment in Phoenix would be, and they just kind of giggled at me. "I only just sent the request on Friday at noon". Yes, but I don't have any idea how long any of this takes. "You can call them to make the appointment, if you want to" -- OK! I called, and about a half hour later - I had an appointment for June 27. A very long time from now. : ( I asked to be put on the cancellation list, and so I am.
I called the Dr. office back to tell them the date and they said "Oh, my". That is how I felt, also, and now, after two days of discussion with the very understanding and wonderful folks at the doctor's office, and looking at several scenarios, we decided this afternoon to just try to do everything here in Tucson. But, we found out that would mean having the original MRI redone, here. The radiologist in Tucson thought that the spots were probably benign, as did the Scottsdale guys, and then said he "couldn't even really see the spots the Scottsdale radiologist saw", so needed his own machine and own pictures. And now - this evening, after even more discussion with my friend Dr. Chris, and Bob and Sara, I realized - it really is only three more weeks, and in the whole scheme of things - it is just not a really very long time. Unless you are doing the waiting.
I need to just keep remembering that.
So, the story right now,this evening, at the end of this day, is that I'm now waiting until June 27 for the biopsy in Phoenix. (I'm using Scottsdale and Phoenix interchangeably - like Kansas City and oh...Overland Park) (whichever is easier to type at the time).
I also finally received my return call (out of town till today) from the Genetic Counselor that the first doctor said I didn't need to go to, then he later said I should be going to, because my "treatment depends on the outcome of the counseling". One friend thinks he is just practicing CYA since I've changed doctors.
I think that this might be the gift I can give to the rest of my sisters - and to their girls.
June 11, 2007
Well - the computer broke down right there and it has been a week of frustration trying to get a post on here - I apologize.
Now it is only 16 more days till the biopsy (I called it a 'biology' yesterday!) My brain is on break right now. I realized today that I can call the Dr. tomorrow and ask for an appointment on Friday the 29th as we now know they will have the pathology report back by then. That will get me just a little bit closer to a surgery decision and date - maybe.

June 4 Oops - Don't mess with Mother Technology

Sorry, guys - I'm trying to get all the font easier to read and all the same on all the posts, and seem to only be succeeding in messing with the order of all the posts - I have redone bits of some of them to make them a little more coherent, (I think) But I think now I have to let Sara try to help me hammer out another way of doing that. Linn - you had such hopes for me. They seem to be misplaced hopes of my technological advances. Oh, well, it is coming along. Patty

May 21 Awkward Sentence?

Monday, May 21, 2007

Was it this awkwardly written
sentence?........

"Too many people who want to know
-- of course. And of course you
should know and of course I want to
talk to any one who calls, but - I
don't know anything more right now.
I love you all. Patty"

I just received the following e-mail
from my friend/neighbor/car pool
partner/mother of one of my favorite
teens (besides Sara, of course)and
it made me realize I may have stepped
on toes inadvertently.  I am so sorry
if my sentence structure came out
badly. That is why you are to remember
you all can't see my expressions or
hear the tone of my voice or
inflection -- I'm so sorry.   I
didn't mean to suggest that anyone
was being anything close to being
"nosy".
Love you all lots.  Patty

By the way - my friend said she
would let me know if I was being
rude or whatever.)

From: L
Patty, I'd apologize for being on
your "nosy list," but since I don't
intend to stop, an apology would be
pointless.  However, I hereby give
you permission to give me updates
last, when you get around to it.
And know that we're all being nosy
because we love you.
L

L -- Oh my gosh - did that sound
like I thought everyone was being
nosy -- I didn't mean it like that
at all. -- Is that why most of my
family is not responding to my e-mail?
Good grief - now what can I say? I
am so sorry if anyone thought that
they shouldn't ask me anything for
fear of being thought nosy!

Sara is going to start a blog for
me. Maybe then everyone will be
able to stay in the loop - as long
as I remember to give out my blog
address (URL).

Today I called the plastic surgeon
and the radiation oncologist for
appointments - can't remember why -
just that the Dr. said to.   I can
always cancel them later,if need be
-- after the MRI on Wednesday, May
23. We are all still waiting till
we get the results from the MRI.
Dr. Whitacre's office just called
to say the lab indeed did not have
enough tissue to do an estrogen
receptor test. So that will have to
wait until after surgery.  It won't
make any difference to any of our
decisions, anyway.
Love, Patty

June 3 Waiting

I am just sort of impatiently waiting to hear when the next step (the MRI biopsy in Scottsdale) will happen. I didn't think the weekend waiting would be so long. I was very busy at work (12 hours on Sat.) and then today we attended a wonderful ballet school recital and production of Beauty and the Beast. Our good friend and car pool partner and neighbor was the 'bird' and the entire production was awesome.
That took up a major part (3 1/2 - 4 hours?) of the day, since Sara and I both slept pretty late.
I'm blithering/blathering (who looked that up with me?) (Margie K.?) because I'm nervous, I suppose. I'd like to think I'm cool as a cucumber, but the waiting really gets to me. Thanks again for all your support and love. Patty

June 1 Someone wants the booby prize

A friend who couldn't get on the blog e-mailed me to say - "I do have a name for the blog - seems obvious - the Boob Blog - since this is obviously the best name I feel I should get the prize - the booby prize, of course."
I loved it. Very clever! Keep the names a-comin'.

June 1 Visit with the new Doctor - Dr. Roeder

We went to Dr. Roeder's office this morning armed with all the films and pathology reports and the CD of the MRI and all the medical information we could drum up. Thank you to all the family who helped with Sally's quest for more knowledge for the medical history.

The new news is that she wants me to go back up to Scottsdale (so it is the same MRI machine) and have an MRI guided biopsy of the newly found spots on the right side. It has to be MRI because they didn't show up on the mammogram or the sonogram. Then, after that information comes back - we will have a better idea of where things are going next. She wants to see if the spots on the right side might be the same cancer (just earlier) as the left side. That will change the outcome of the treatment plan.
I do actually feel lucky that there is all this fancy 'medical foo foo' stuff available for my very own personal use. I am also feeling very lucky that we have insurance. We didn't, the last biopsy I had to have.

I told Sara that it was very lucky for me and my breast cancer diagnosis that I was raised on a farm in Kansas, because that is where there was a combine for me to fall off of (Mom's story, anyway - I don't remember that part). I presume it was just off the ladder and then I hit my chest on another rung?-- anyway - sometime later I had my first breast/chest surgery to remove the 'watery cyst'. Lamar, Colorado, St. Mary's hospital. I remember wearing a beautiful pink chiffony-ish (nylon?) dress with lace. I remember trying to count backwards from 100 with the ether mask over my face, and I remember the nuns helping me dress or undress - and then Mom driving me home. This is I think my first memory.
So---I now have a 4 inch scar on my chest, and 50 years (!) later I'm old enough that it is loose enough from the rest of the chest wall for that scar to come up into the mammogram picture. Lucky again.
Then I decide to check myself and find the lump - among many. luck again. When they go for the second mammogram, it doesn't show up , but when I remember to ask them to check in this other place while they are doing the sonogram - there it is -- the lump. So - they recommend, and I go for, the biopsy, and the one tiny piece they were able to get before I tried to bleed out - contained a specimen of two kinds of cancer. Lucky lucky that they got the right piece in that small grape-sized spot! Now, I just want all that luck to continue! And I feel it will because I now have the doctor that I wanted in the first place and I love her and feel very very comfortable with her. And her decisions. And recommendations. Lucky me. Now I'm waiting to hear when I go to Phoenix - she thought it would be in a week and a half or so. ???? Waiting till Monday to find out when I go. Thank you all for all the wonderful thoughts and prayers and love - I do feel very loved. Thank you... All my love to you, Patty