Monday, November 24, 2008

Monday: "Wow! Am I ever happy THIS day is over!"

Yep! Those are the very words our patient uttered as we headed south on the freeway toward the barn this evening. (My car knows the way from the Huntsman Cancer Center to my house by heart now. No need to use the steering wheel.)

Lo-o-o-o-ng day! In our twelve hours there li'l' ol' Gretchie-Poo:

1) Had surgery
2) Had a heart test
3) Had a CT scan from knees to chin.

Short recap:

1) Surgery to insert the port just under her left clavicle that will be left there until the first of April when her chemo ends. Beats the heck outta having an IV started every other week when she begins chemo a week from tomorrow.

2) The heart test (nuclear medicine) took about three hours and tested the contractability of her heart. Gretchen's oncologist told us that the heart is sometimes in danger of being damaged by chemo. This test gives her (Dr. Buys) a baseline to track possible damage. (Br-r-r --- my own heart suddenly went cold at the very thought.)

3) Two quarts of barium later . . . the CT scan tested for possible metastasis that may already have taken place. Notice the cavalier way I typed that? That's because I refuse to acknowledge anything so dastardly could already have happened. Nope. Uh-uh. Nada.

"Super Gretch" asked me to take her home this evening. She said she could take care of herself tonight because she's aware I'm wa-a-a-a-y behind in my Turkey Day weekend houseguests preparations, and she'd be just fine.

Too bad.

I stopped by her house, locked her in her seatbelt, picked up her mail, her drugs, and her toothbrush . . . and brought her home!

So there.

She's now lying in the guestroom bed listening to her iPod and licking the dregs from her plate of the delicious beef stroganoff that thoughtful Alan made for us. And sadly, we must keep the excitable Miss Polly off her bed -- that little black fur-person just gets too spastic for our patient.

Miz Fegel is pretty darned sore from yet two more chest incisions for the port. As I just now snipped the plastic hospital ID bracelet from her arm, I asked, "So, Gretchie-Poo, have you been keeping track of how many of these I've cut off your wrists in the past several years?" No guesses.

Again, we're grateful for your many thoughts, prayers, invitations, good deeds, cards (Dayle, yours just crack us up!), emails, treats, etc. YOU are what keeps that girl going.

On to Phase II.


Loss of hair, yes . . .

. . . but not of spirit.

Monday huggies to you all,
Lindy-Lou the Mom

PS -- Miz Mary Beesley -- I just can't thank you enough for the truly fun jewelry-making party you invited us to last eve. AND the photo session (FOUR photographers!) you organized last week to capture the final locks of You-Know-Who. It's thoughtful people like you who warm the cockles of so many hearts . . .

Friday, November 21, 2008

Chemo Update

Hello Dear Ones!

Yesterday my mom and I were at Huntsman from 10:30 to 3:30...getting the low-down on all things chemo. The appointment included meeting a myriad of new people, including a social worker with a funny laugh, kind nurses, and Dr. Buys--who is wonderful. She sat down with us and went through a breast cancer 101 worksheet and drew diagrams, and explained all the reasons why chemo is a good idea for me...the two biggest factors are the size of my tumor, (anything over 5cm, and mine was 6cm) and the fact that it was found in 2 lymph nodes. She was very thorough and answered all questions. During teary moments she even gave us hugs :)

Before I start, she ordered a CT scan from neck to knees to see if there are any mets. She also ordered a MUGA test which will test the health of my heart's ability to pump well, as chemo can negatively affect that. These two tests will happen next Monday, the 24th, along with a port placement under my skin under my clavicle for easy access for chemo. Dr. Nelson, my surgeon will also do is a proceedure which takes no longer than 30 mins and while they don't put me completely out, they give me local and amnesia drugs...i love the idea of forgetting I was ever surgerized!

Then, Tuesday, Dec. 2nd will be my first chemo treatment. I will be given 3 drugs, the first two administered together, Cytoxan and Adriamycin, 4 total doses administered every other week. These two drugs will cause me to loose my hair after the second treatment. This will be followed by 4 more doses, administered every other week of Taxol. After each of the 8 treatments, I go back the following day for a dose of Nulasta, which will help keep my white blood cells in check, and hopfully prevent any infection. She said that often times this drug causes deep bone aches.

She also offered me the opportunity to participate in a study, which would give me more drugs, alongside of the chemo that they think will add to the chances of avoiding a recurrance. As she mentioned one of the possible side affects (the jaw bone can get infected if a tooth is pulled, or there is big dental just doesn't heal) I asked if it could possibly affect other bone healing processes, as I still have the big foot/ankle surgery ahead with bone and cartiledge grafts. She wasn't sure and will check with the ortho guys to I may or may not participate in that study.

After the 8 weeks of chemo, then comes the 5 weeks of my calculations I should be done with the treatments by mid-April. Then I will do 5 years of Tamoxifen (a pill you take every day), as I am ER+, PR+ and Her2-...all of which make it possible to take this estrogen binding drug, which is the best combination to have :)

I also got my first "fill-up" at the expander pump station, 60ccs of saline, which though not painful, is certainly noticeable. My nurse said that she took someone from an A to a DD size...that's not for me, but my, what a little saline can do.

Finally, at the end of day, the nurse took us into the treatment room and walked us through the process of checking in, and then we toured the room. I think after a long day of information gathering and processing, this was the most sobering of moments...the reality hit that this is really going to happen.

One last note...I attended a genetics counseling workshop on Tuesday, and decided to have the test done to see if I have the BRCA1 or BRCA2 gene mutation, which based on the fact that one cousin on my dad's side had breast cancer at a young age, makes it feasible that I have the gene. If they do find that I have it, then my dad should get tested next, as it could have significant impact on my two half-sisters as well. It would also put me at a significantly high risk for ovarian cancer. It will take 6 weeks to get that report back.

I never anticipated entering the world of cancer, but I guess no one really does. However, I am constantly amazed and impressed and grateful that there are so many skilled, caring and empathetic professionals with whom I am associating. I am also grateful to be in SLC, close to my angel mother who is willing to give up her days spent in appointments and care and who also sheds tears along with me. Continued thanks to all of you for your support, I couldn't do it without you! Love, gf

Tuesday, November 11, 2008

Good News!

Just a quick report on the dr. visit yesterday, the path report came back negative, meaning that there wasn't any more tumor cells in the tissue they took...sad to have had it verified by surgery, but better safe than sorry. Also, I got the drain removed---Yeah!

I am now officially moving on to phase II, chemo. I meet with my oncologist for the first time on the 20th and will get the low-down on the treatment plan. An oncology nurse we talked with yesterday said that it may be possible that the dr. will put me on an every-other-week treatment plan for the treatments, which would shorten the duration, which would be nice. She also confirmed that I will get the type of drug which will make me loose my hair. A bit of good news though, she said that it is not acceptable to them for patients to be vomiting or have nausea...a little queeziness they can live with, but that they have drugs to combat the really icky I am hopeful that that will be the case.

Right now the biggest hurdle is getting the scar tissue to break up in my arm to prevent a frozen shoulder, which I have no need of :)

Much love and gratitude to you all. gf

Monday, November 10, 2008

The Weekend Report

Howdy out there, blog-followers!

Our patient had a pretty good weekend. Saturday she not only got up smiling and happy, but she made breakfast for us AND cleaned up the kitchen!

Yesterday she went to church but only for an hour. The drain from her incision is driving her nuts and she was quite tired (all that pot-scrubbing from the day before, no doubt!) so she rested for the remainder of the Sabbath.

Today is her follow-up appt to last week's surgery. Her doctor will remove the drain-that's-no-longer-draining and I'm sure she'll be a lot more comfortable. She still gets stabbing chest pains now and then and that right arm is only slightly above shoulder level when she lifts it.

I'm being a Simon Legree in making her do exercises to get that arm up there. She does this finger-walking up the wall thingie to s-t-r-e-t-c-h out that scar tissue. Makes her break into a sweat to do it. But she'll get there, never fear! She blow-dries her hair and everything else with her left arm/hand. Alan was born a south-paw so he thinks that's perfectly natural!

We should get the final path report today as well. Stay tuned . . .

Lindy-Lou the Mom

PS -- Oh! Gretchie-Girl is telling us this will be her last week as our houseguest. I know she's anxious to get home to her cute, new little house, but SHEESH! What'll we do without her cheerful spirit and upbeat personality??? sniff . . . sniff . . . sniff . . .

Friday, November 7, 2008

Challenging Week for "Super Gretch"

Dearest Friends and Fam;

While we knew this second surgery would be easier than the original, of course there are bumps along this road as well.

For instance:

Our patient spent an agonizing day-after with a horrific headache from the big-gun drug -- oxycodone. We keep asking each other -- "Why on EARTH would anyone pay BIG MONEY on the streets for such misery??" To Gretchen, back on the big-gun = horrible headache = time to stop taking them. She tried to back off gradually, but the head pain was still there, so now they're a no-no.

So now it's OTC ibuprofen for our patient for pain -- but unfortunately ibuprofen doesn't cover it. For some odd reason she has left "Frisbee" pain -- coming off the sternum(cancer was on the right). Also back pain from being in bed so much, stomach pain from who-knows-what and just general misery.

Our lovely fall finally turned into winter with that wonderful snow storm Wednesday. I played Christmas music all day and we drank Pero and stayed warm inside. Yesterday, Gretchen got cabin fever and ventured out with her new baby sister, black fuzzy little Polly -- br-r-r-r-r to all of us. With no fat on her (Gretchen's) chest, even tho she was bundled up, she began to shiver. The shivering causes her muscles to spasm and that equals great pain. So back inside we went.

She has a drain coming from this incision and I empty it regularly, but there isn't much fluid there -- unlike last time.

Overall, this week-after is quite an improvement from the first week-after a month ago, but still not fun.

Your continued care and concern is what keeps her going. That and audio-books. She received a box of great ones yesterday from her buddy Dayle in Dallas and can hardly wait to dig in and listen up. TV doesn't hold much interest for her, even tho we record everything we like in order to FF thru the commercials. Must be that trip down the stairs to our new TV room. Occasional movies are fun, however. Last night it was "Rush Hour III" Silly stuff -- I fell asleep but the others made it thru.

And, oh. That famous smile of Gretchen's you all know? It never ceases . . . even while she's wincing in pain. Personally, I find it difficult to wince and smile at the same time. I should snap a picture next time -- sorta contorts her face in an odd way, but she manages it nevertheless . . . poor girl.

(BTW, you folks give me far too much credit for her well-being. You see, it is I who gets the up-lift and inspiration from my patient, not the other way around . . . )

Lindy-Lou the Mom

Tuesday, November 4, 2008

Our Patient is Home!


This procedure turned out to be a one-day surgery. Yahoo!

She's a bit dizzy, light-headed, but not nauseated. She's in pain but the big guns should handle it for the next few days.

The surgeon was able to leave the tissue-expander in after all, but he told us she'd be even MORE sore, of course, with the skin stretched so much further over it. She already refers to them as "feels like two Frisbees shoved into my chest" -- sounds so awful!

I'm happy about the expander being left in because that should reduce the number of plastic surgery procedures down the road . . .

The doctor thinks he got all the tissure he needs, but we'll have to wait probably another week for the full pathology report. Waiting . . . waiting . . . waiting . . .

One concern: Her right arm.

She can't lift it past shoulder level and last night we discovered why. If you were to look at her armpit where the lymph nodes were excised(such a thrilling prospect!) you'd see what looks like a huge tendon has formed there, preventing any decent range of motion.

She showed it to the doctor today and he said it's scar tissue. Given Gretchen's history with scar tissue(adhesions galore from a few addominal surgeries seven years ago), that's not good. She's going to have to work really hard and do many stretching exercises to get that arm straightened out so she can use it.

So that's the next project after she heals from today's surgery.

And the beat goes on . . .

More later,
The Mom,

Musings of a Sunday...

posted on a Tuesday.

One of the good things about going through major challenges, those which you know you cannot possibly face or complete or even contemplate on your own, is the immediate marshalling of force by loved ones and dear ones in your behalf. It really is amazing. I have been so fortunate to know and associate with wonderful folks from so many different walks of life who embrace and espouse various religions, beliefs and lifestyles. I love the variety! It has been delightful to be the recipient of everyone's unique methods of service and love. It reminds me of a concept recently talked about by Dieter Uchtdorf in an address of the October LDS conference.

He related the story of a time when he and others were trying to move a heavy piano from one room to another, and how they tried various methods, all of which failed until someone suggested that they all stand close together around the piano and then lift where they stood. By doing this, they were able to use their combined strength to successfully move the piano. While this story has many applications, I immediatly thought of my own situation. I feel like my burden of cancer and its attending fears, woes and pains is like the heavy piano which needs to be lifted and moved. It is a burden of such magnitude, one which I would never be able to lift alone, let alone with only a couple of helpers.

It really is a miracle that I have had you, dear family and friends who have stepped up with willing hands and hearts to help lift my burden. You have done so in such unique ways, reflecting your own unique talents. You have called, brought lunch, sent flowers, organized a shave your head campaign to raise cancer research money, visited, leant a blue tooth, provided dinner, sent cards, made a halloween costume and a lovely blanket, delivered apples, offered blessings, gifted books, organized a weekend getaway on a lovely ranch, fasted, sent good thoughts, made me laugh, brought thoughtful gifts and prayed. Truly, you have all lifted where you stand, and your strength has "moved" my burden. Without you I would certainly despair and remain "unmoved".

While the journey ahead still looms long, I know that with the support you have given me and that which you have already pledged to give in the days ahead, I know that all will be well. So much thanks to each of you who have so willingly lifted where you stand. Love, Gretchen.

Monday, November 3, 2008

Gretchen's Terrific Halloween Weekend


Our patient acted almost like a non-patient these past few days.

She partied two days in a row!

We paid a surprise visit (to all but Anja, who knew beforehand) to Gretchen's LDS Conference Center buddies at a potluck dinner on Thursday. They were so happy and amazed to see her up and about! Such lovely, caring people -- I was thrilled to finally meet them all.

On Friday, it was off to the annual Navitaire costume chili cook-off. Gretchen wore her "Super Gretch" cape her friend made, and was hugely welcomed and hugged (carefully) by the large crowd. And not only were the 20 pots of chili fabulous -- we tested them ALL -- but the rock band, made up of Navitaire employees, was just awesome! Sid-Mary-Tom and others -- you guys ROCK! The costumes -- with super-friendly folks under them -- were so fun! (Sterling, YOU are one of a kind!)

Friday night, Gretchen even sat on the porch for awhile and helped hand out treats to nearly 200 spooky visitors.

So Saturday -- did Gretchie-Girl pay a price for prancing around the countryside for two days? Of course . . . but it wasn't too bad. Another jammies-only day and we three lounged around with hot chocolate and popcorn watching BYU take Colorado State in a close and exciting game. Cozy homestead days are good too.

Yesterday morning Gretchen took over the kitchen and made two pumpkin-chocolate-chip-cream-cheese pies and some yummy stew for dinner. And then she drove herself to church 20 minutes away in Draper. She didn't last the whole time there but she did really well. She's off the "big gun" drugs now and can lift her right arm to shoulder level, so Alan let her drive. (I'm sure this grown-up woman just loves to be told by her step-dad when she can drive and when she can't!)

Of course, tommorow it starts all over again.

We don't know the surgery time yet, but I know I won't be dragging our laptop to the hospital. We'll arrange for someone who's blog-savvy to post the results of the surgery immediately. The surgeon doesn't know beforehand if he'll have to remove the tissue-expander on the right side in order to get all the tissue he needs -- or not. Stay tuned . . .

Speaking of this blog . . .

In our travels about the countryside and from many emails, we're learning just how many scores of folks are following this blog. Omigoodness! It's just amazing to us how many caring people are out there. Gretchen has talked to a couple of private-personality women recently who've experienced breast cancer in the past and chose to do it without the knowledge of others -- chemo, radiotherapy and all. While we understand and respect their desire for privacy, we just don't know how they did it! The love and support of family and friends is the Number Two thing that keeps this gal going. Every get-well card brings tears of gratitude. YOU, dear ones, are precious to both of her caregivers.

I love and cherish you,
Lindy-Lou the Mom

PS -- My good buddy, Eileen Roberts in San Diego, tells us we need to change the phrase "breast cancer survivor" to "breast cancer REvivor" -- we LOVE that!

Saturday, November 1, 2008

Slight Delay in Surgery Date

Good Saturday to you All!

In talking with my Dr.'s office yesterday to ask what time I need to show up for surgery on Monday, I learned that there had been a miscommunication with the scheduling girl. Because of that, we had to reschedule surgery to the following day, Tuesday, November 4th and it will be at the Uiversity hospital rather than Huntsman. That's all for now...happy choring, footballing, camping or whatever else your Saturday holds for you! Love, gf