Blessings! Blessings! Blessings!

Hey all, I'm back from my 2nd treatment at Duke and wanted to give a small report.



When I go to Duke for medical treatment, the schedule runs something like this: We drive in Tuesday night, get some sleep, get up and get blood work, meet with my oncologist and then get chemo. On the second morning, I can walk in to the infusion area and get my Neulasta shot at my convenience. Then we go home.


However, this particular trip to Duke turned out a little differently. When I went for my blood work, the techs noticed something wrong with the port that was installed during my last trip. This port can be used to draw blood or administer chemo fluids.


However, my port wasn't presenting the soft, permeable area where needles are inserted; it seemed for all the world to have gotten flipped over.  But how does that happen? They didn't want me to have it repaired on the same day as my chemo infusion (1st day), so I had to wait until the next day (Thursday) before my Neulasta shot. 

Here's a link to the exact port I'm using. Doesn't it look like a little purple heart?

http://www.bardaccess.com/port-powerport.php


So, on Wednesday, my chemo ran long because of all extra appointments and blood work I had to have done before the port repositioning. Last time chemo ran about five hours, but because I was made late getting in there, we didn't get out of the infusion room until 7:30 p.m. I was really drained. 


But I still had a something wonderful to look forward to, something I was excited to do. As soon as we got back to the hotel, I fluffed what was left of my hair and went directly to another room in the hotel to see my friend Michelle Dressler, who had come down to visit with me from Charlotte, NC, and was also spending the night in the hotel.


I am so very glad I got to spend some time with my Mi-shoo (my name for her). She looked simply wonderful and we got caught up on a lot of what was going on in her life (a nine-month old baby girl I haven't even held yet, and a brilliant, gorgeous seven-year old boy I've truly grown to love.)  We talked about half an hour and then went out to get dinner. It was a lovely evening altogether. 


The next morning we met for breakfast, but she is a working lawyer and had to be up and on her way all too soon. She insisted on paying for our room for two nights because that's just the kind of friend she is. She's asked me time and time again what she can do to help me, but I've already been so blessed, there was nothing specifically I could ask her to do. But I'm confident that whatever I had asked, she would have tried to help me with it. 


I have to say I've just been blown away by all the kindness and love God has sent our way. Michelle's visit was a special treat for me. I've missed seeing her and I know that we're not going to let as much time pass between visits. Good friends are blessings in life. Best friends are downright sacred!


So, after breakfast, Pat and I had to report to the hospital to get geared up for the port repositioning.  The docs said that this port flip-flop almost never happens and apologized profusely--to Pat. What is it with male doctors talking to Pat but ignoring me! As for the port flip-a-doo, Inza, my cousin, says she thinks it is from all the hugging I did last Friday at my benefit. Sounds plausible, right? The doctor actually surmised that the notch they cut out for the port was just a little too large and that the scar tissue that was supposed to form around it failed to hold it in place. So they gave me some sutures to hold my McDerment-power port into place. I can hug with impunity.


Oh and some of you might laugh to know that I gave away my favorite Premier jewelry set that I was wearing to this nice young male resident who was prepping me for the port re-set. He admired my necklace and earrings, then jokingly asked me if he could have it as a present for his first anniversary to his wife. She'd just sent him an Edible Arrangement and he was fretting about what to give her that evening. (I did wonder why he had waited until the last minute to get her something and figured he must be pulling my leg.)
 

Somehow, in all of my travels, I had ended up with this perfect little piece of tissue paper left in a bag I was carrying with me, so when I changed clothes, I fixed it all up for him to give to her. He was so surprised! Then I gave him my card and advised him should call me to order some more great stuff for her. To be honest, I don't know whether I was workin' it for the business or paying it forward. Either way, it left me with a smile in my heart.


 While running around the hospital for different procedures, I kept passing this support group area that mentioned wigs, "Come check out our wigs!" I went in just prepared to try on a few, then maybe come home and look through a larger selection to make a purchase. But as it turns out, they gave me a wig, a longer "hat hair," and two very cute caps. I kept asking, "You're giving this to me?" But they kept saying, "Yes we are!" It was a blessing. And Inza, you will laugh to know that the wig I picked out is just a little bit lighter than the hair you're sporting now! It was my favorite of all that they offered me. I think Mom secretly covets it . . . . .

Just kidding, Inza.

This wig couldn't have come at a better time, because my head rest in the car was starting to look like a mad, blonde hen had tried to nest there.  (Um, maybe that is what happened?)  So, Friday morning, Mom and I got up and she took my trusty Oster Golden to my head. It wasn't bad. I wasn't emotional. I was glad to be moving on. The more of these milestones that pass, the sooner I can be well! Sinead O'Connor I'm not, neither am I Quasimodo. As my friend Teresa O'Cassidy predicted, I had the best night's sleep I'd had in years.


The whole process of going under for the port repair and then having to get the Neulasta shot (which makes you extra tired) made for a really long drive home. We ran into an accident, but even without our GPS, we managed to find an alternate route and in no time were traveling at a happy speed heading toward home.


We didn't get back until about 11:30 p.m. Thursday and of course, we were tired and ready to go straight to bed. But there were dogs to be petted and talked to and hugged. And I gave Mom a few little presents I found for her along the way. I always have to find some little something for Mom when we are out and about. They're usually just little things to let her know we appreciate all that she does for us. She's doing good keeping everything running well for us.


Now, this isn't in chronological order, but I wanted to save the best news for last. I am responding to the HERCEPTIN! Herceptin is the drug that helps women with HER2 positive tumors. Doesn't work on everyone, but for some people, it can be a magic bullet.


Am I one of those people? I think I am, I think I am, I think I am!


On my first day at Duke (Wednesday) I met with my oncologist Dr. Kimmick and she reported that the margins that so clearly defined my large tumors are gone. I'll leave the details out of this and just say that this means that the two tumors I had are responding to the drug therapy. They're not gone, but they are lessened.  I asked the doc if she was gonna put a smiley face beside her clinical notes for that one and she hugged me instead and said it was really good news! She told me whatever we or I was doing, it was working.


I am Thanking God for All These Good Things! Another day He did something wonderful for us. Another day of blessings, blessings, blessings!



I'll try to keep up blogging as the days go by, but I'm just about at that time when I get really tired and don't want to do much.  So, for now, I'm thankful for comfortable pajamas and the ability to GO BACK TO BED!

The Word is THANKFUL

There is a lot of power in the words we use or say to ourselves or one another. We can bless or blow someone away, depending on the choice of our words.  My word today is THANKFUL.

My cousin Sharon has a real gift of prayer and man, when she prays over me, I feel like God's got his hand right on my head, touching me. Her every word packs powerful imagery and is filled with recognition of God's power and his love for each of us. I love it when Sharon prays for me. I almost feel unworthy of the prayers she says over me. I want to say, "But I'm not all that good! I don't deserve this love!" But last night was something like that, too. I hope my words back to you all resonate in some small way with those of you who have done so much to show your support for me in this very tangible way. Thank you for your words of love and healing and power and God's spirit over me.

Luke 6:38 says: "Give, and it will be given to you. A good measure, pressed down, shaken together and running over, will be poured into your lap. For with the measure you use, it will be measured to you." I don't think I've ever done anything to merit what's been given to me these last few days, but it sure feels pressed down, shaken together, running over and poured into my lap. I am really grateful beyond my capacity to tell you but my hope is that you will have some sense of the measure of it.

There were so many people who came to play bingo, buy jewelry and just support my personal cause last night. Some I didn't even know, some were long-time friends of the family and some were my very beloved family. I think I was most surprised by the people who didn't even know me, but just wanted to spread the love. One lady told me she didn't know me, but she saw the ad my cousins placed in the Coal Valley News for the Bingo fundraiser and having just gone through chemo and a mastectomy, she wanted to come out and show her support for me. Man, stuff like that just makes the tears flow like water with me. God is so good and his people can be so good, too.

I was especially moved that my family supported me in such an obvious way. I mean, they basically got this event planned then sort of informed me they were doing it and hoped I could be there. They know--because they're just like me--that I would never ask for them for help. It's one of those things that I've always been somewhat prideful about. I am realizing that it is not good to be that way, but the great part of this is that I've been pretty blessed while learning this important lesson.

For those who may not know or wonder why they felt I might merit a fundraiser, Pat and I have had some extra expenses with my medical treatment since I'm going out of town to Duke, which means overnight stays at hotels and meals, not to mention the cost that goes along with any cancer treatment. And I've gone through this before, and anyone who has knows how quickly this illness can drain a savings account.  It is true that it was my choice not to be treated here at home, but there were good reasons for that decision. Here in Charleston, my first cancer in 2006--oral cancer--was misdiagnosed as a benign condition, and then last summer, the tumors in my breast were said to be benign as well. Just didn't leave me with a lot of confidence in the care I've been able to get here in WV.  I don't mean to be sharing too much and I've really tried to avoid talking much about being sick on FB or elsewhere, but at the same time, I feel some of you may wonder why I am going out of town for treatment. I am sure there are great doctors in our city and I've been fortunate enough to have a few, but since the stakes are so high, I felt I wanted to go to the best place I possibly could. I am blessed to have a husband who supported that decision.

Okay, now that I've got that all 'splained, I want to give thanks for my wonderful family who saw a need and gave from their hearts. I adore them! Sisters Milisa, Inza and Tresa were there doing some heavy lifting and organizing and my cousins Tabatha, Gloria and her husband Joe, Dianne and son Donnie, Bev, Nicole, Tina, Vera and Vickie Tyler-Slater who is my cousin in love, even if not blood. I can't say enough good things about this bunch or the way they've been there for me. Some of them came a long way and obviously went out of there way to be with me last night and I hope I was able to express to them how much it meant to me. They're all beautiful and wonderful and special. And they're my cousins!!  I was also really glad to see my ex-sister-in-law Nancy (still very much part of my family) and her boyfriend, Scott, there, too. They make such a good-looking pair and I was happy to see Nancy happy.

Then there was my wonderful Premier Designs jewelry family! Wonderful Dorothy Prudich (who along with my cousin Milisa, really started the whole idea of a fundraiser on my behalf) and her crew of Lisa Means and Linda (neither of whom knew me, but have a heart for love and service), were there to show jewelry and help raise money, along with my sweet and beautiful cousin Tabatha, who came even though her husband Blake is just getting over very serious health scare. Then I also have to really give a shout out to Kelly and Julie Stewart from my Georgia Premier family, who were there with their two cute Yorkshire Terriers. (I ask you, would an event for me be complete if dogs were not a part of it?) I've only spent a single day in Kelly and Julie's home, yet they treated me as if I were a valued friend. 

I also want to share that Premier Designs jewelry company had been a real blessing to me in the midst of all the stuff that has been going on in my life. One of the great things they did for me was to suspend my active membership as a designer until I can be well and active in the company again. This effectively freezes my license and keeps the clock from ticking on the jeweler fee I've paid which enables me to sell their jewelry.  I had just started with Premier when my Mom had her car accident and then I was diagnosed, so I wasn't really able to get a full head of steam going with them. My cuz Milisa who is my upline has told me many times that this is a company built on Godly principles and I've sure seen it to be true. Once notified of my situation, they quickly let me know I needn't worry about trying to stay active in sales as I was dealing with health issues. I don't know any other company who would do so much for someone who'd been with them such a short time. I hope when I get back to being healthy again, I can bring more people and friends into the Premier fold. Not only is their jewelry beautiful and guaranteed, they are devoted to making life better for their employees. They've proven to me that they not only talk the talk, they walk it. Those are the kind of folks I want to be part of my life.

Several of my friends told me how cool they thought it was that I was so close to my family and that my Premier family had turned out to support me, too. I was really proud of both families and really glad to show all of you off to those who are my friends, but not relatives. It's like having a spouse that everybody likes (and I do have one of those): it only reflects well on the other half. You all sure made me look good last night.

Then there were my former co-workers, some of whom were working the concession stand and didn't get to get out and get about and hobnob with everyone else: My dear friend from the first time we met, Beth, along with her new husband Virgil Lipscomb (they're so cute; still honeymooning). Beth is a supremely talented cook and brought cookies to share with us. She also sold some at work earlier in the day to aid my cause. Isn't that cool? Of course, Beth's cookies are a bargain at any price. They're like carbohydrate crack; I crave them fortnightly. I was thankful to also see my favorite Marmetian: the always-helpful and loving, point-me-in-the-direction-I'm-needed Terri Bray, and the endlessly talented and funny Deadra Cummins. I had so much fun with all of them when we worked together. It's really crazy and wonderful all at the same time that people I worked with on what is now going on eight years ago still think enough of me to be there for me. I don't miss the work so much, but I really do miss all my good friends back at Guthrie & Thomas. It's nice that I can still see them and hug their necks and tell them how much I miss them. They're good people.

But man, I absolutely cannot forget to thank my favorite Twister Sisters (or is that Twisted Sisters?), Teresa O'Cassidy and Lois Swannigan, who both went to high school with me. Along with my fabulous cousin Inza--who, incidentally, is part of another Twisted Sister act ; - ), they made up "The Lunch Crew." This is the great name they thought up for us since we've had some really LONG, but fun and laughter-filled luncheons, They actually brought Elvis wigs for the four of us to wear just to make me hoot with laughter--which it did--and then proceeded to present me with pretty much all I'll ever need vanity-wise to get through all this dealio. They gave me a cool hat, a "hair hat," and other really cute caps that will be perfect for the very near day when my hair is all gone. Thanks to Teresa, for going on behalf of the the group to Resolutions II to round all that great stuff up for me. Baby, you know what I like!

We're supposed to wear the Elvis wigs at a future luncheon date . . . I can't wait for the pictures that will follow that particular outing. I think I'm blessed to have such funny, creative friends who find ways to make me laugh my fool head off.

This morning, I found bags of mints and gum and snacks in the kitchen and asked where they came from and Pat said, "Those crazy girls." He meant my loving friends, The Lunch Crew. These girls make me laugh and help me forget the cares of any day. And, btw, ladies, the only thing that tasted really good to me today were the peanut-butter snack things from those bags. Gotta love that and you!

I also really appreciate Jill McCormick for all she did in helping out before and after this shindig. She helped stay and clean and do all the end of the evening stuff. She was the last of the bunch that left and the rest of them were my family members. She didn't have to do all that, but she did and I really appreciated it.  Long ago, I got a wonderful and much-loved Scottish Terrier from Jill and her husband Mike. Isn't it funny how things come around on the banjo? Mom says she doesn't know what I mean when I say that, but I think you get the gist.

I also had some other pals from high school representing: I can't forget my beautiful, wise and sweet friends: Sharon Cullop and Paula Meadows, Janie Belcher and Vickie Dingess. My Mom always says when she talks about Sharon: "She really loves you, Russie." Sharon has called a lot since I've been sick and talked to my Mom, getting updates. Sharon has had her own bout with this kind of stuff and she knows just about how I'm feeling. Sharon's two beautiful daughters, Jessie and Olivia were there, too. I love Sharon's girls so much and it just tickled me no end to see them. Olivia even gave me one of the prizes she won and told me she wouldn't be using napkin rings, but hoped I could use them instead. (She's just a little bitty thing, so this cracked me up.)  An Sharona, here's what I have to say to you personally: Love You, MEAN IT!
 
My old school chum, Paula Meadows, has sent me some hilarious and uplifting cards and assured me she has others waiting to be sent. She was double-booked for the evening, missing the early part of a shower for her niece, but still came to be with me and stayed for as long as she could before leaving. Isn't that cool? And caring? And Vickie Dingess is just the same smiling, beautiful babe she was in high school. I was simply honored that she came out to support me. And grateful that she can keep secrets. [Smile.]

And that cutie Janie Belcher . . . I don't have enough words to say just how adorable she is.  She and her beautiful daughter Hannah were there playing Bingo with us and I was so pleased to see them there.  Her Mom and my Mom have been the best of buds since they worked together and Janie and I have been friends since my Mom, her Mom, Karen Webb and her Mom and Janie and I all went to Myrtle Beach for my first time there. What fun we had! Janie and her Mom, Peggy McCallister, are people we know we can count on to bring the love when we need it.

Another person who stopped by but I didn't get to spend enough time with was my first grade to forever friend Cathy Caruthers and her partner Mary Jo. I walked outside to the jungle gyms to see their two active young boys, well, in action! Cathy has been my friend for as long as I can remember. Unlike my family--who are stuck with me--she has chosen to keep me as her friend. And what a good friend she has been. The last time I was sick, Cathy was the first among my friends to call and say, "What can we do?" And she really meant for me to tell her. She's a shrink by profession and knows me pretty well, so her words of wisdom have a tendency to resonate with me. Last time, she kind of talked me back down from my scared place and I don't think I've looked back since.

And I have to give thanks, last, but not least, to my great college buddies, Randy Coleman and David "Chief" Pennington, who came such a long way to just say hello and wish me well. I was so surprised to see them, but it sure felt good to know they thought enough of me to come from Bristol and Johnson City, TN, to let me know they cared how I was faring.  They saw the event on FB and just decided to come be with us. They're both pretty big deals, so I felt even more grateful they took most of a weekend to spend in Charleston for me. Pat and I spent the morning/afternoon with them at I-Hop today, swapping stories and laughing a lot and making a new memory. Time has only improved these fellas and they were pretty doggone good to start with.

Blessings, blessings, blessings.

Yesterday and today, I felt such a sense of gratefulness and awe at all that has been done on my behalf by people I so admire and hold dear. It's been a wonderful lesson to us to just hold still and let people love us. I hope you all feel the love I send back to each and every one of you in return.

Snoopy Dancing In My Kitchen

Just a little health update for those who have wondered how things are going with me.

I went to Duke twice last month and found I loved the team of radiologists, oncologists and the surgeon who would be working with me. Dr. Horton is the main radiologist, Dr. Gretchen Kimmick is the main oncologist and Dr. Gregory Georgiade is my surgeon.

I had a real curve ball thrown at me while I was there. The radiologist started by giving me the good news that Herceptin (one of my chemo drugs) can work so effectively in some people with HER2 protein that their tumors seemingly melt away. (I heard a strong "YAY" in my head when she said that.) But then I met with the oncologist and everything was changed. She felt I might have metastatic or inflammatory breast cancer, which, I'll be honest, were the two that I was so happy I didn't have when I did my brief research on invasive ductal carcinoma. It's my way of seeing the glass half-full, but it came back to bite me. Thinking, "Well, I'm very fortunate that at least I don't have that . . . ." turned into "OmiGod, I might have that!"

She also thought she felt enlarged lymph nodes on both sides under my arms, which would mean metastatic breast cancer. The thought of inflammatory breast cancer was brought up because one of the tumors in my breast had actually punched up through the skin of my breast, below my collar bone.

I shamed myself by crying a little bit, then got myself in shape while they did a punch biopsy (to rule in or out the inflammatory breast cancer diagnosis), then cried again when I was getting dressed to go down and meet with Dr. Georgiade.  


He was great, but explained to me that the tumors I had were so large, that no matter what, the order of my treatment would be much different than I had been led to expect in Charleston, where my doctor wanted to immediately do surgery.

1. I would first have six to eight rounds of chemo to shrink the two tumors (Taxotere, Carboplatin and Herceptin), followed each by a Neulasta shot to keep my white blood cells up;

2. I would have two months of radiation, twice a day;

3. I would then have a mastectomy and lymph node dissection of the right lymph nodes, even if I did not have any sign of cancer in them. Standard protocol dictates that they are taken from either side of the armpits if large tumors are found in the breast nearest them;

4. I would have reconstructive surgery sometime later;

5. I would be well and happy and go back to everything as normal. Okay, no, he didn't really say that, but that is what I heard in the taped loop that runs in my head. I always think to myself that I've just stopped on the playground to tie my shoe and that I'm going to be back, caught up and playing with everyone real soon.

However, some days are roller coasters, even for someone like me with what I'd call a pretty good attitude.  For about three hours that day, I was feeling really scared. Then, I just said, forget this, if I have to deal with something worse than I thought I had, well, that is just what will happen. I am as equipped mentally and physically to get through that as I was the earlier diagnosis, so I am trusting God for all of this, just as I was before. He loves me, He is not punishing me, He will hold my hand through whatever comes. Nothing has changed but the words coming out of my doctor's mouth.

Okay, yes, I know the biology would be different with the other two cancers, but this again is what I heard in the taped loop that runs through my head.

So, Pat and I stayed an extra two days in Durham, awaiting Friday when I would undergo further testing.


We went to have brunch, went to a funny matinee movie, had an early dinner, strolled through the urban sprawl of shops surrounding Durham, but this was in 103 degree heat, so not as much fun as you might think. 

Pat and I looked at furniture and couches at Pottery Barn and Restoration Hardware and found one at the latter place that I simply adored. Pat said to put it on my wish list, but gave me the distinct impression that not even a 20th anniversary present could make that couch look like a good deal. He hates retail pricing.  But the couch we own now was purchased at a steep price, but has served us well for over TWENTY YEARS. You could say we don't buy on impulse or splurge much in furnishing our home. My sense of style derives more from thrift shops, estate sales or hand-me-downs, with a few really good pieces thrown in here and there to show I do have a little sense.

I think I could make a house look great if given an unlimited budget, but I'm not in that position, so I make do with my own eclectic imagining of a home. It suits us. But we do need to find a place for our all Scottie collectibles. No matter how artfully I arrange them, the sheer volume is starting to be creepy, not fun. But that's a thought for another day.


Much refreshed from our day of relaxation, I went back to Duke on Friday for PET scans, MRIs and blood work.
I found that I liked the staff in those clinics as well as I had my team of primary doctors. Everyone so far has been so organized, professional and encouraging at Duke. I like that combination!

I had a small reaction to the dye they used in the MRI. It was the first time anything like that had happened, so when I popped out of the machine and everyone in the room rushed up to me and exclaimed over the huge, witchy welt that formed on my chin, I was surprised.  They asked me if I had that welt when I had gone in the MRI, I was like, no, not unless I am Jessica Parker and I don't know it. But really, it was way bigger than Jessica Parker's wart. It was a big welt of a thing, and oh, was it itchy. (And witchy.)


So the next time I have a PET scan, I have to have it in the main part of the hospital where I am near the surgical suite just in case I have a reaction where I can't breathe or something even more serious. But I'm not gonna worry about that, either. They seem to be doing enough of that for me.

When I was done with the tests, Pat and I were free to go home. I tried to clear my head of everything and not let myself dwell on all the possible scenarios, i.e., inflammatory or metastatic breast cancer because honestly, I just didn't want to think too much about it until I absolutely had to.


And that turned out to be a smart thing to do.  About a week later, Dr. Kimmick called to give me the great news that my cancer was not either of the two forms she had been worried about. She still could not completely confirm it was ductal carcinoma as my pathology slides from CAMC had still not arrived (after a month and two weeks of requesting them), but that she felt confident in the treatment plan they were going to give me. The only new information not already provided by Dr. Georgiade was that I would be receiving Taxotere, Carboplatin and Herceptin as my chemo cocktail every 21 days. It would take about four and a half-hours to receive that during my first visit, and would be a little less time in the subsequent sessions. I would have my Neulasta shot the following day. So we'd have two nights in Durham. After six to eight sessions, I would be following up with Herceptin for the next year or more, once every 21 days.


I wrote down that Dr. Kimmick said that I had right lymph node involvement, but the radiologist I'd met with here at home (the one terrific doc I've had here in WV), Dr. Prem Raja, called to make sure that I understood all the results of the tests and assured me that I did not  have any lymph node involvement, but as I had been told, right lymph node dissection would be recommended due to the size of my tumors and the probability of microscopic (read: undetected) metastasis to them.


Well, this was just the best news I'd heard in a while. Dr. Kimmick's call had come while I was in the kitchen fixing dinner, Mom and Pat milling around talking and helping here and there. I took the call and left pots on the stove, hoping Mom would take care of things. 


When I came back into the kitchen, I tried to look serious, but I couldn't help it . . .

I broke out into the Snoopy Happy Dance.

Then Pat and I started dancing together:

Then Mom started dancing and singing, "Praise ye, the Lord, and we sang "Hallelujah!" just like the old hymn, ending with a big "Praise ye, the Lord!" Mom clapped her hands and Pat said, "Well, I think I'm about to tear up," and we all hugged and said how blessed we were. And we had a big, beautiful dinner of celebration and gave thanks for that, too.

Jewel flying around the room

 
It was a good day. Another day to be thankful. Another day that God did great things for us.

My Mendhi Melon

I am thinking today about the art of henna and mendhi and wondering if my head would look like the melon above if I decided to decorate it in such a way. I've always loved henna, thought it looked exotic and mysterious on the hands and feet, but never had such a broad expanse as my noggin to work with before.  I am going to have a few weeks to think about it, but I think I'll go for it!

Another Day, Another Doctor

So, off again on another adventure of health care and healing. On the advice of one of my old high school pals, I went to see her oncologist in Fairmont, WV. He's supposed to be a really great doc and he's saved her life on at least one occasion.




We didn't take the car with navigation (my car is in need of repair) so Pat and I had a few words over the sadly lacking Yahoo map he was using to find the place. It was way off. In the end, I guessed where the office was and luckily, that was a good guess. I was in a little bit of a snit since we ended up being 20 minutes late, and I slammed my car door a little too hard to emphasize that fact, but apologized to Pat as soon as we sat down and I started filling out forms. He knows I'm stressed, but I don't think he'll indulge me in many more little tantrums. He's patient, but he's stressed too, so his line in the sand is a little bit closer to him than it was before. I understand that and I'm sure I'll do better once I know my game plan once and for all.

There was a lady there obviously going through chemo whose husband was so obnoxious and unkind to her in his remarks, it made me thank the Lord all over again for letting Pat be mine. He's such a good support for me and even better this time around than he was when I was diagnosed with oral cancer in 2006.


I'm a quick form filler-outer and I had it all knocked out in record time and back to the nurse. Like most docs, they ask you to come early enough to fill out the forms with some time to spare, so, in the grand scheme of things, we weren't really late at all.  I was even more shamed to have been even a little bit ugly to my sweet husband.

As it turned out, the doctor's office was located in Fairmont General Hospital. It's an old hospital, badly in need of an update. Not a place I'd want to come for healing, you know? It left me feeling that it needed cleaned and I don't know about the rest of you, but I can't get comfortable in a room that needs cleaned. The doctor's office had one little bathroom and you had to cross the infusion room where patients were taking chemo just to get to it. Pat refused to disturb those folk getting infusion, but I couldn't wait. It definitely struck me upon exiting that if I were a patient, I would not like that layout. But the staff was friendly and helpful and I was seen quickly.


The doc was a nice guy, about 62, trained at MD Anderson. We discussed what had and had not been done in my case and I mentioned I had tried initially to get into MD Anderson. He told me that he could get me in there "tomorrow," if I wished to go there, but I explained that I was happy now with my decision of going to Duke in NC. 

The exam was a little weird. I wasn't asked to get into a robe. He just asked me to lean forward, he unhooked my bra and asked me to lift my top. The thing about exams of your personal bits is that they are less weird if it all feels clinical. This definitely wasn't. His nurse and my husband were in the room watching all this, so it felt even stranger. 

I was more than a little uncomfortable.

I felt like I was channeling some of my wild friends on Spring Break circa 1983 or starring in my own Girls Gone Wild video. Except I didn't want to be doing either of those things.

When Pat and I discussed it later, he said he thought that maybe the doc had to rush through my appointment since he had worked me in as a favor to my friend, thus foregoing the time it would have taken to get me into gown. Maybe. But it didn't feel like that. But, whatever. I'm open minded and I can adapt.  I figure I'm going to be flashing my pretty bits at an ever-increasing rate in the days ahead, so I might as well get over it. Maybe it will be harder when they are no longer pretty bits and maybe I should relish that I still have something to flash at anyone. So . . . yeah . . . that's probably true. I'll remember that next time.


After that strange exam, the doctor talked to me a bit about what might be in store for me. Because I've done a lot of research already at the great CURE magazine website, I knew there was also a lot he wasn't telling me or expecting me to know. I asked him to write down the protocol he would follow--realizing he didn't know yet my lymph node status--and he did. The only surprise was that it would use Taxol at 70 dose versus 80 dose. He said the side effects were much worse at the higher dose, but the benefits did not correspond. He said it worked as well at the 70 dose.

So, his schedule was adramyacin, four doses; Herceptin taken with my first dose of taxol, which would be given once a week for 12 weeks, and followed with a year of Herceptin.

After discussing family history of cancer, he urged me to have the test for the BRCA gene mutation. I thought that was a good idea and glad he suggested it.
http://www.cancer.gov/cancertopics/factsheet/Risk/BRCA

He also urged me to have an MRI of my brain every six months since HER2 neu positive cancer can and does metastasize to the brain, as well as liver, lung, bone or ovary. In fact, this happened with the friend who referred me to this doctor. She had a slight headache, mentioned it to this doc, he insisted she have an MRI that very day and the report came back showing a pea-sized tumor in her brain. She had gamma knife surgery and she currently has no brain mets, so I know that getting ahead of a potential problem like this is optimum. So, I consented to have an MRI that very day at Ruby Memorial Hospital.


The last few minutes of my consult with the doc was a little rushed. I was trying to ask him if my previous oral cancer which was hpv negative, but positive for P16 mutation on immunostain upon DNA study, could be linked to this current cancer. He said he didn't know where I had my studies done, but that it wasn't possible in 2006 to know those things. 

Well, those who know me well know just how fast I whipped out that particular molecular study from my well-organized file folder of medical procedures and reports and handed it to the good doc. (FYI, my oral cancer DNA studies were done at Johns Hopkins University, not exactly at the end of the world; why wouldn't an oncologist know those tests were available years ago?) 

He didn't say anything, but said he'd copy the reports and then disappeared. I never saw him again. The nurse said I should come outside and wait until the MRI could be confirmed and in the meantime, they drew the blood for the BRCA test. Then we left.

Pat and I discussed the overall strangeness of the consult and agreed that this probably would not be the oncologist I would be using in the future.

The MRI was located in the Robert C. Byrd Health and Sciences building at Ruby Memorial Hospital, and just our luck, a water main had just broken and there was water flooding the MRI waiting and testing rooms. So they were delayed in taking me back. I remarked to my husband afterward that I don't know why, but the people who do the CAT scans and MRIs are always the most upbeat and cheerful of all the health care professionals you see during cancer treatment. These ladies were no exception. They were also grateful for my suggestion of how to keep the fan they were using to dry things from walking across the slick polished floor. It was simple, really, to put a small blanket under it. They told me they'd give me a discount for that little tip, but as it turned out, they just gave me a blanket, too.

I was sleepy when I got in the MRI for the brain scan, but who can sleep amidst all the clanging and banging? So, I just said my mantra the entire time, over and over: "I will be happy, healthy and strong." It's amazing how much better just saying those words can make me feel. Although today on Facebook, my long-distance friend David King, who shares my love of Scotties and gardens, suggested that I change my mantra to: "I am happy, healthy and strong." I liked his idea and immediately corrected the new verbiage on my bathroom mirror. I'm thinking of adding affirmations to all the mirrors in the house.

Pat and I stopped to have a bite of dinner before heading home. We got back about 9:30 last night. We had a beautiful, blazing red sunset toward the end of our journey and I enjoyed it so much, couldn't stop looking at it long enough to even nap. We hadn't thought we'd be gone as long as we were, and oh, boy, did we have some hungry canines waiting for us at the door. I prepared food for the dogs while Pat took them out in the yard and they all marveled at the big, bright full moon that illuminated everything so brilliantly. H. I., known to Pat as my "Stage 5 Klinger," wouldn't go outside unless I went with him, so I popped some food in the microwave and took a minute to step outside with the gang.


It's a tired cliché, but there are some things in nature that are just so beautiful they make you gasp. Our moon last night was one of those awe-inducers. I never get tired of things like beautiful sunsets and gorgeous moons. And yes, I do have faith I will see many more to come.

Thank you, God, for giving me loving friends, trained specialists, a sweet and caring husband and a family that supports me in loving ways. Thank you for the beautiful world that surrounds me. Its beauty gives me hope, knowing you at the core of it all and you're the same one who holds my hand as I marvel at it all.

 

I remember the morning this picture was taken . . . for some reason, I had on my Grandma Canterbury's nightgown.  I remember she always loaned it to me when I stayed with her and somehow I must have figured how to smuggle it home. It was very roomy, with a white background and some kind of a dark blue or black dot or print on it, and had three large gold buttons up the front. I loved it.

On this particular morning, I am remembering that my Mom woke me up because my brother had arrived home for a visit. He was either in training or had gone to Vietnam at this time. We were all so exited that he was coming home, and I think the general neighborhood was, too, but my Mom and Dad were visibly happy. I remember them singing around the house as they did their chores and making special trips to the store to buy special things they thought Wayne might like to eat. 

Then, he arrived! I remember especially how relieved and glad I was to see him and to know that he was safe. He was all smiles that morning, and I guess he was happy to see us, too. He brought Mom and Dad presents--I don't recall what those were-- and he brought me a flashy "cutting star" sapphire cocktail ring. To this day, I don't know exactly what a cutting star sapphire is, but it sounds exotic, doesn't it? I sure thought so.

That gorgeous, heavy ring, with sapphires stacked up into a dome was not appropriate for a little girl to wear and was way too big for me then, but I loved it all the more because I considered it a grown-up girl's accessory.

I still have that ring and have found occasions to wear it from time to time. I smile when I think of the circumstances surrounding its gift to me. Not only was my brother safe and well, but he came with gifts to cheer us.

The fact that he was safe and well was no small thing to our family. He was the only son, oldest, my father's pride and joy. When I was six and seven, I'd listen to the evening news with my parents. Afterward, my Dad would mark the areas of fighting by placing pins on the map of Vietnam he'd put up on our dining room wall.  I would then go to bed and pray fervently for my brother. My prayers had an obsessive, desperate quality to them. Six and seven times in and out of bed, down on my knees, begging the Lord to keep my brother safe and in one piece.

Little did any of us know all that he would experience--three wars in total, some very dangerous places and situations--and that God would keep him safe through all. He still keeps him safe in his job now as an air ambulance (helicopter) pilot, which is rated one of the most dangerous jobs of all. The Lord truly is our hope and our salvation, but our mother has worn out her knees as she assures herself daily of that fact.

I got some news lately that made me want to get down on my knees and get a little desperate in my prayers. Not for my brother, but for me. Over a month ago, I learned that I have a particularly aggressive form of breast cancer.

It all started at this same time last year when I had a stereotactic biopsy to check out an area that looked suspicious on a routine mammogram. This kind of bioposy is sort of surreal. You lie on a table with your affected area through a little hole in the table and the doctor uses a Mammotome machine to extract a core sample. 

At that time, the doctor placed a small rice-sized titanium marker in my breast to mark the spot for future mammograms or studies. It was an extremely painful process in my case and one I hope never to repeat. I was so very relieved when that biopsy report came back negative for cancer. 


When a little knot appeared at the scar from the biopsy a few months later, I assumed it was a problem with the titanium marker. I'd had a problem with titanium screws and a plate used in a wrist surgery I'd had years before, so assumed this was the same issue. 

But as the knot on my breast grew bigger and harder, I sought the advice of my surgeon and she agreed to remove the marker, remarking it looked like a hematoma. Only upon opening up the old incision did she realize that the knot had characteristics of cancer and so she did what is called an incisional biopsy (which means a sample of the tumor was taken, but not with clean margins).


Then I got the news that the tumor was positive for cancer.

Just when I was thinking everything was cool because it had been two weeks since the procedure and I had heard nothing, I got my report back from the doc. It was the 11th of June.  She asked me to meet her in her office in two days to go over all of my reports. My husband and my mother accompanied me and we asked lots of questions, but so many could not be answered.


Like why a tumor in the same spot as I'd had a biopsy the year before? My surgeon had no answer to that, but the radiologist I saw the following week had some ideas.

He suggested that it was due to one of three things: 

(a) just a coincidence;

(b) cancer had grow in the biopsy area and had run along the scar area as he explained that an old scar is the path cancer can often travel and was still just a coincidence; 

or (c) the tumor was missed last year during the biopsy and had been growing for over a year. 

I found the last option to be the most scary.

I wanted to get my MRI in a hurry, but due to the fact CAMC Women and Children's Hospital only does breast studies on certain days of the week and were already well-booked,  I had to wait two more weeks (the 30th of June) to get an MRI. And it was the 6th of July before I got the results back. At that time, I also got the results of the FISH study report indicating I was HER2 positive.

The status of my lymph node involvement--or lack thereof--will be known only when my mastectomy is done in the next month. Those results will typically give the medical community an idea of my overall prognosis.


Right now, I only know part of the equation that is the sum of my cancer and will be factored into my prognosis, and that information has come in dribs and drabs. At this point, I do know the following:


(1)  I have a very large (over 4.6 cm and possibly 8 cm. x 2.4 cm) tumor in my right breast, diagnosed as invasive, inflitrative ductal carcinoma. It's the most commonly diagnosed breast cancer;

(2)  The tumor is estrogen receptor positive (meaning estrogen fuels it), so bye-bye little Vivelle hormone patch that I've unwittingly loved so much. Being estrogen receptor positive is actually in my favor;

(3)  The tumor is an aggressive one, with an overall grade of 3 on a 1-3 scale. Obviously, this isn't good;

(4) The tumor is strongly HER2 positive, another sign that my tumor is aggressive, with higher chance of recurrence and a worse prognosis;

(5) I will have a mastectomy, chemo and radiation, in that order;


 To explain the features of the tumor mentioned above, a

pathologist looks at the tumor cells and checks for three microscopic features:

• degree of tumor tubule formation (percentage of cancer composed of tubular structures)
•  tumor mitotic activity (rate of cell division)
•  nuclear grade (cell size and uniformity)

Each feature is scored on a scale of 1 - 3.

Feature Score 1: Slow cell growth rate
Feature Score 2: Intermediate cell growth rate
Feature Score 3: Fast cell growth rate

The score of all three features are added together for a total between 3 and 9. 


My tumor scored a 9. 
Lions and Tigers and Bears, Oh My!

As to the molecular study of the tumor, I was found to be HER2 positive. I had my heart set on being HER2 negative, which would mean my tumor wasn't all that aggressive after all, but that was not to be.

HER2, which is also called HER2/neu, and HER-2, is the acronym for Human Epidermal Growth Factor Receptor 2. If breast cancer is tested positive for HER2,  that means that your HER2 genes are over-producing the HER2 protein, and that those cells are growing rapidly and creating the cancer. My status was determined by FISH, or Fluorescence In Situ Hybridization. This test uses fluorescent probes to determine the number of HER2 gene copies in the tumor cell. More than two copies means the tumor is HER2 positive.

The typical treatment for an aggressive HER2 high-scoring tumor is Herceptin along with standard chemo protocols. Herceptin has some risks to the heart and increases strokes and blood clots, but as I read somewhere, cancer patients can't afford to worry about this when they're waging the cancer battle. Or put another way: Don't stop to tie your shoes when a train is coming down the track.
 
Time seems to have slowed to a crawl since I had my original incisional biopsy on June 2nd. Like most people who get this kind of news, I was going about my daily life, not thinking anything about cancer.

I spent the month of June trying to get into MD Anderson hospital in Texas because I'd heard it was The No. 1 cancer hospital in the United States. The initial contact I made left me dissatisfied with the patient coordinator, who I felt was unfriendly and not the least bit helpful. So different from my prior cancer hospital, CTCA, which was not in my insurance network. Still, I persisted. Texas was where I had to go, and I am nothing if not a determined kind of girl.


It dawned on me after more discouraging conversations with the folks in Texas that maybe I should trust the signals I was getting and abandon the idea of MD Anderson for treatment. God was not pointing me there or making it easy for me, so why fight the feeling?

But that left me once again with no plan. I hate being without a plan. I need to know who, what, when and where will be caring for me. I had none of that information. I felt like an untethered balloon, drifting toward it's inevitable pop. 


Then, the next week, a long-time friend and breast cancer survivor, Mary Jane (Caudill) Bradshaw, phoned me up and mentioned that Duke University in Durham, NC, was a great place and that I should try giving  them a call. I did just that. The warm attitude and helpful information I received from their patient coordinator was just like a big arrow from God saying "THIS WAY."


I've spent a lot of time wondering and thinking about my reports, feeling annoyed that it's taken so long to get the results and that it's been hard to get timely treatment. That's another thing about me, I like to have all the information and I'm not happy without it. 

But reflecting on this has given me a different way of looking at the situation. While the delays have been hard on me in one sense, I feel that God was letting me have a little time without the worry of a diagnosis and reports hanging over me, to enjoy a little reprieve. As I said to one cousin in a flash of honesty, "Before I have to wade through all the sh*t that is before me."


(God knows I say this word; there isn't any use to hide from him here.) 


Once again, I am encouraged to trust him and to know that he is in control and seeing to my needs in the very best possible way. Who knows? Maybe it is that I won't feel good again for a while. Maybe not ever (but I refuse to believe that). I'm thankful for the time I've had to clean my house, cook for my husband, enjoy my dogs, continue my endless genealogy research, and enjoy my friends and their loving attention to me. If things had been set in motion at the speed I could have been happy with, I wouldn't have been able to have this sweet little bit of time enjoying my life.

I love my life more than I ever have before. I'm happier with my husband, my family and myself. We actually have less money-wise since I quit work and I've gained weight I'd love to be rid of, but I'm still really happy in my life in the ways that are important. I have such wonderful friends and family and so many things in my life that give me joy, I can't imagine losing any of that.

My Dad said once as he was dealing with pancreatic cancer: "I've prayed to be healed, but if he chooses not to heal me, it is a win-win situation. If I'm healed, I'll be here with you; if not, I'll be in heaven with him."

But I'm not quite as strong as my Dad was nor as accepting. The last few days, I've felt fear run through me that has not been present through much of the experience so far. I do not embrace the fear, I want to banish it! My mantra (actually written on my bathroom mirror) is that: "I will be healthy, happy and strong."

I want to live and I will fight to live. I know heaven is waiting for me, but honestly, I want it to wait awhile. Here, my will might be opposed to what God wants for me, but I can only confess the desires of my heart to him and accept what comes with whatever grace I can muster.

In summoning my strength to gear up for this fight, I've tried to remember God's faithfulness to our family through the years and pray in the same way I always have, believing he loves me and will keep me where he wants me. 

I've sort of been through this before. Five years ago, I was diagnosed with oral cancer and I lost one-third of my tongue and much of the floor of my mouth and was not able to speak intelligibly. I was understandably devastated. Oral cancer is a highly recurrent cancer, so I had the worry of that in my mind as well.


Buy my power of speech and my health was restored to me in dramatic fashion after prayer and anointing with oil. I know that sounds old-fashioned, but my friend, Dr. Michael Barry,  Dir. of Pastoral Care at Cancer Treatment Centers of America, was the instrument in that anointing. He looks like a bank president and talks like a college professor, but he believes in old-fashioned things like healing and he told me he felt led to pray and anoint me. His prayer for me was simple, direct and powerful and I was healed--in an hour! It was supernatural, spectacular, mysterious and miraculous, and so much more that my words can't begin to express.

To have the gift of speech regained through prayer is a wonderful thing, a powerful, mind-altering gift, but like the cutting star sapphire ring that was too big and grown-up for me at the time I received it, I wasn't quite in the place to use the knowledge the experience gave me. In truth, it left me with more questions than answers.

My history with God was that I loved him, but I was always scared of him, too.  A lot like my real Dad, actually. I spent many hours in church growing up listening to the damning power of God, but not nearly as much about the uber love he offers us. The result was the feeling that I had to please him 24/7 or I couldn't feel that I was a Christian or experience his love fully.  Lots of people I know would say that was the right way to feel. But I don't accept those beliefs anymore.

I can fully acknowledge that I've failed in my life in many areas, so I have never been the best Christian or even person that I could be. If my sins were bricks, I could make the Great Wall of China all over again. I've judged people, I've let hardness stay in my heart when I was wronged, I've been proud and arrogant. So when I looked at all the truly good people in the hospital who were so worthy of being healed and realized that he still chose me, I was puzzled. Could it be that God loved me without any caveats. Just Plain Loved Me? 

 I don't know the answers yet, but I've come to suspect that God's love is a no-strings-attached sort of love. I think it's we as humans who add all the conditions to it.


So, yeah, my faith is a bit unorthodox and from what I can tell, that will continue. I simply want to focus on the love he has for us and less on the judgment, but that's just me. Everyone has to find their own way. I think when we do wrong in our lives it carries its own results but I no longer see God as a disapproving father I have to continually appease or ELSE. Instead, I see him as a loving friend who is rooting for me every second of every day. Just that shift in my perception makes me want to be better, do better than I ever did before.


As as the days count down until my appointment at Duke University Hospital for further assessment and treatment, I will be talking to him often, asking him to take me by the hand again and lead me through the scary parts and share with me the joyous moments, too.  I'll be asking once more that he care for me just as I am, scared, flawed, but ever hopeful.  

Maybe he'll show himself to me in an unexpected way, reminding me  again that I'm ultimately safe with him.

And I'll sing and give thanks just like my Mom and Dad did so long ago when God kept his promises to them and returned my brother to their loving arms.